As we close out 2013, I look back.
All things point to this being my most difficult year ever. If I would have planned out this year, nothing that happened would have happened. Heck, I could have lost my life to a pulmonary embolism. But as I look back, it's hard for me to say this was in fact the most difficult year ever. Why? Because I had Jesus.
Let's look at the positive rather than the negative. I SURVIVED a major surgery. I SURVIVED a pulmonary embolism. I SURVIVED getting through it without the one I loved the most. In 2012, I was hospitalized for 8 weeks total. In 2013, I was hospitalized for 5 weeks total. That's an improvement, right? Right. And here I am the last day of the year about to close a huge chapter in my life and enter a new one. Every day I wake up with a song playing on repeat in my head. Todays was "This is the first day of the rest of your life... it's gonna be alright."
And alright it will be.
The past years I have looked ahead saying "This is going to be MY year." Or "This is going to be OUR year." This year I'm not saying it's mine or not mine. I'm not saying it's anything. All 2014 is is a new calendar... and none of the boxes on there are guaranteed. That's what this year showed me. We can fill up those boxes all we want, write something in them to plan months ahead... but plans change, people change and you just never know.
So I thank God for each box that is behind me and each new one He brings forth carrying me through. It's not the number of boxes/dates on a calendar we walk through, it's not even what is written in them... it's the substance within that you can't see. It's having Jesus in your heart knowing that no matter how many days you are given and what those days hold, you're going to be alright.
This isn't going to fit with all I'm writing here. It's going to sound out of place because it is. But it's something I wanted to share so I'm adding it in. At the end of 2012, a year ago, I thought about what my new year's resolution would be, just like everyone else. I decided to turn inward spiritually, instead of outward worldly in making that determination. My new year's resolution was to dedicate one day, each day, to someone I knew... and to pray for them that day, in addition to any other prayers. I am happy to say, today on December 31, 2013, is the first year I fully completed a new year's resolution. Even the days spent in the hospital, there wasn't one that past that I didn't dedicate and pray for someone I knew. And if you are reading this, most likely you had a day dedicated to you without even knowing it.
In addition, I started a prayer journal. When a specific situation arose, I wrote down the person's name and my prayer for them. I admit I was not as dedicated to this as to my daily dedications/prayer, but I tried to do it whenever I remembered. Looking back, I wrote about 60-70 specific prayers. About 40-50 of them have been answered. That is amazing! Absolutely amazing! It is beautiful to visually see prayers getting answered. And the 20 or so that were not answered, looking at them, most of them I requested something in a specific time frame on those. It reminds me, this is not my time, it is God's time. God will answer prayers in His way at His time. We must adjust, we must believe and we must hold on to the hope He gives us.
As we close out 2013, I look back. As we close out 2013, I look forward. And most importantly, as we close out 2013, I look up. And that is where I find peace. May that peace be carried with you also to bring closure on your past, life into your present, and faith about your future. In Jesus' name, Amen.
Tuesday, December 31, 2013
Monday, December 30, 2013
Trust Him
So there has been a post I've felt I've been called to write for some time now... but then, you know, life happened. But I told myself, just because struggles are coming my way, I'm not going to stop writing. I'm not going to let any obstacle bring me down or keep me back, I'm just going to hop right over it or use it as a stepping stone to keep on pushing along. Well, or so I say. Keep me encouraged on that one please.
This is the post I've been meaning to write for a while. Really right now, this very second, I only have a topic in my head. Where it leads? We shall see...
We need to make an assumption here for just one moment. Let that assumption be that I would have gotten sick no matter what. No matter what.
Now, rewind.
I entered into college with the desire of majoring in psychology. I wanted to be a psychologist. I wanted to sit with people and listen to their problems day in and day out and help them work through them. That's what I imagined my life to be like. Well, freshman year of college, I took my first psychology course. I ended up with the "hard" teacher. Any time we had a test myself and a few others would be up studying until 2 am. And then the test would be filled with just about everything we did not prepare for. Why? Because where that information came from no one knows. I'm pretty sure that was one of my only C's in all of college. I may have brought it up to a B- I don't remember. Regardless, it's exhausting just thinking about how difficult that course was. It kind of put a bad taste in my mouth thinking how on earth can I put up with this instructor for 4 years? My goal going into college was to graduate with honors. I did not see that happening if I kept on this path. Furthermore, I wanted to enjoy whatever it was I majored in and the career that brought me into, not dread it. Well, partnering that aspect with someone telling me not to major in psychology because I won't find a job in it apparently was enough to discourage me from continuing in that direction. Psychology major no more.
I didn't know what to major in after that. I really wanted to be a psychologist. I also thought about being a veterinarian but I love animals so much I couldn't deal with the pain they go through and I couldn't do any type of surgery stuff. So that was out. Then there was art. I enjoy it, but as a major, I didn't think that was my path. Business? Everyone majors in business. Good option I suppose. But business and myself didn't really click. I thought of it more as a minor just to have that background/knowledge.
Then I took a communication class, and another communication class. Loved it. Loved the professors, loved the material, loved public speaking, loved presenting, loved the media aspect of it, loved how it involved organization and thought processing. It even involves some psychology if you think about it- interpersonal communication and how we communicate differently, non-verbal cues, etc. I found a match. And then I added on public relations, kind of for the heck of it. I thought going into event planning would be a good idea and thus public relations would be the best background for that. I loved those 2 majors and everything about it.
Then college graduation came along and I was trying to figure out what to do when certain life aspects added up in an odd way. I got my entry-level dream job as an event planner, but honestly I didn't need either of those majors to do that job. Event planning is kind of just what I was born to do, paid or not. And so I thought, gee, I kind of wish I majored in psychology. Everyone was losing their jobs, including myself, and the economy was going down. A lot of people could really use seeing a therapist... psychology jobs would therefore be in demand, right? I pondered going to grad school to continue on to become a counselor, social worker or eventually psychologist. But at that same time is when I started getting sick. So that option closed, at least for the time being.
Anyways, what this story is eventually getting at is this. Back to the beginning, if we make the assumption that I would have gotten sick no matter what. No matter what. Communication was my best option. What can I do right now? I can't work. I can't physically do too much. I certainly wouldn't be able to be a psychologist at the moment. But I can write. And I LOVE to write. I didn't major in English so yeah my grammar is probably all over the place. I wouldn't be able to deal with majoring in English anyways. Way too proper for me. But, I have to think that communication, and public relations major, taught me some good things that I'm using right here. And some day I do still hope to publish a book. And when I do I hope these communication skills help me write it and PR skills help me get it out there to the public.
So again, my whole point of this, why I felt called to write this. A lot of people who read my blog are fellow MGers or POTSies. We all often struggle with who we are, what we are supposed to do, what we are able to do, and if we are making any sort of difference in this world. We often have to reinvent ourselves, redefine life itself. Heck, even those without chronic illness go through this. Therefore, we must look at the positive, at what we have, at what we accomplished, and how it's currently being used in our lives. There is a reason for everything even when we don't know that reason. It all adds up or someday will. Maybe it's not how you pictured, how you planned or even how you want... but we have to believe that in fact it is actually better!
God knows what He's doing. Trust in Him.
This is the post I've been meaning to write for a while. Really right now, this very second, I only have a topic in my head. Where it leads? We shall see...
We need to make an assumption here for just one moment. Let that assumption be that I would have gotten sick no matter what. No matter what.
Now, rewind.
I entered into college with the desire of majoring in psychology. I wanted to be a psychologist. I wanted to sit with people and listen to their problems day in and day out and help them work through them. That's what I imagined my life to be like. Well, freshman year of college, I took my first psychology course. I ended up with the "hard" teacher. Any time we had a test myself and a few others would be up studying until 2 am. And then the test would be filled with just about everything we did not prepare for. Why? Because where that information came from no one knows. I'm pretty sure that was one of my only C's in all of college. I may have brought it up to a B- I don't remember. Regardless, it's exhausting just thinking about how difficult that course was. It kind of put a bad taste in my mouth thinking how on earth can I put up with this instructor for 4 years? My goal going into college was to graduate with honors. I did not see that happening if I kept on this path. Furthermore, I wanted to enjoy whatever it was I majored in and the career that brought me into, not dread it. Well, partnering that aspect with someone telling me not to major in psychology because I won't find a job in it apparently was enough to discourage me from continuing in that direction. Psychology major no more.
I didn't know what to major in after that. I really wanted to be a psychologist. I also thought about being a veterinarian but I love animals so much I couldn't deal with the pain they go through and I couldn't do any type of surgery stuff. So that was out. Then there was art. I enjoy it, but as a major, I didn't think that was my path. Business? Everyone majors in business. Good option I suppose. But business and myself didn't really click. I thought of it more as a minor just to have that background/knowledge.
Then I took a communication class, and another communication class. Loved it. Loved the professors, loved the material, loved public speaking, loved presenting, loved the media aspect of it, loved how it involved organization and thought processing. It even involves some psychology if you think about it- interpersonal communication and how we communicate differently, non-verbal cues, etc. I found a match. And then I added on public relations, kind of for the heck of it. I thought going into event planning would be a good idea and thus public relations would be the best background for that. I loved those 2 majors and everything about it.
Then college graduation came along and I was trying to figure out what to do when certain life aspects added up in an odd way. I got my entry-level dream job as an event planner, but honestly I didn't need either of those majors to do that job. Event planning is kind of just what I was born to do, paid or not. And so I thought, gee, I kind of wish I majored in psychology. Everyone was losing their jobs, including myself, and the economy was going down. A lot of people could really use seeing a therapist... psychology jobs would therefore be in demand, right? I pondered going to grad school to continue on to become a counselor, social worker or eventually psychologist. But at that same time is when I started getting sick. So that option closed, at least for the time being.
Anyways, what this story is eventually getting at is this. Back to the beginning, if we make the assumption that I would have gotten sick no matter what. No matter what. Communication was my best option. What can I do right now? I can't work. I can't physically do too much. I certainly wouldn't be able to be a psychologist at the moment. But I can write. And I LOVE to write. I didn't major in English so yeah my grammar is probably all over the place. I wouldn't be able to deal with majoring in English anyways. Way too proper for me. But, I have to think that communication, and public relations major, taught me some good things that I'm using right here. And some day I do still hope to publish a book. And when I do I hope these communication skills help me write it and PR skills help me get it out there to the public.
So again, my whole point of this, why I felt called to write this. A lot of people who read my blog are fellow MGers or POTSies. We all often struggle with who we are, what we are supposed to do, what we are able to do, and if we are making any sort of difference in this world. We often have to reinvent ourselves, redefine life itself. Heck, even those without chronic illness go through this. Therefore, we must look at the positive, at what we have, at what we accomplished, and how it's currently being used in our lives. There is a reason for everything even when we don't know that reason. It all adds up or someday will. Maybe it's not how you pictured, how you planned or even how you want... but we have to believe that in fact it is actually better!
God knows what He's doing. Trust in Him.
Saturday, December 21, 2013
What Stress Does
Hi everyone. I have unfortunately been put into a very stressful and hurtful situation, at the most horrible timing possible with Christmas in a few days. That's all I can say about it, but I wanted to let you know so you also know that I may not be blogging as frequently or possibly not at all for a while. I am going to try my best to still get on here if I can, but if not, you now know why- kind of.
Anyways, I wanted to also use this as an opportunity to further detail how stress makes both MG and POTS worse. This is the absolute without a doubt most stressful experience in my life, so MG and POTS are both flaring like crazy. Here's what's been happening to me:
My bp dropped to 88/38.
My fever is up.
I can barely eat. I force myself to.
Down to the lowest weight I've ever been since being a teenager.
I got 1 hour of sleep one night, 4 hours another night. My normal is about 9.
My whole body feels like it's burning from the inside out.
I was coughing up some blood.
Chest pain, lots of chest pain.
I lost my voice/voice went too weak to use.
Blood pooling and tachycardia making me near passing out way too often.
Vision is all sorts of messed up.
Muscles, needless to say, are weak.
Breathing has been more difficult.
This is not a complete list and putting it mildly because oh yeah my brain fog has been out of control. Furthermore, I found out from my heart monitor my heart rate hit 180 which I've known the highest to be 169 so that wasn't too much of a shock, very high nonetheless. But the shock was my heart rate dropped as low as 6!! Is that even possible? Unless it was some kind of error, showing up multiple times, my heart gets so slow it's close to not even beating. My heart is in fact broken so I guess that makes sense. Only a few people will get what I mean there, but it's not important. What is important is it is still beating, and while it is I must attempt to make that heart beat worth beating.
Please please keep me in your prayers. If nothing else, to get through this nearly unbearable time in life without landing in the hospital. Thank You.
Merry Christmas and God bless.
Anyways, I wanted to also use this as an opportunity to further detail how stress makes both MG and POTS worse. This is the absolute without a doubt most stressful experience in my life, so MG and POTS are both flaring like crazy. Here's what's been happening to me:
My bp dropped to 88/38.
My fever is up.
I can barely eat. I force myself to.
Down to the lowest weight I've ever been since being a teenager.
I got 1 hour of sleep one night, 4 hours another night. My normal is about 9.
My whole body feels like it's burning from the inside out.
I was coughing up some blood.
Chest pain, lots of chest pain.
I lost my voice/voice went too weak to use.
Blood pooling and tachycardia making me near passing out way too often.
Vision is all sorts of messed up.
Muscles, needless to say, are weak.
Breathing has been more difficult.
This is not a complete list and putting it mildly because oh yeah my brain fog has been out of control. Furthermore, I found out from my heart monitor my heart rate hit 180 which I've known the highest to be 169 so that wasn't too much of a shock, very high nonetheless. But the shock was my heart rate dropped as low as 6!! Is that even possible? Unless it was some kind of error, showing up multiple times, my heart gets so slow it's close to not even beating. My heart is in fact broken so I guess that makes sense. Only a few people will get what I mean there, but it's not important. What is important is it is still beating, and while it is I must attempt to make that heart beat worth beating.
Please please keep me in your prayers. If nothing else, to get through this nearly unbearable time in life without landing in the hospital. Thank You.
Merry Christmas and God bless.
Saturday, December 14, 2013
Double Standards
First- I guess I spoke too soon. Today is back to my "normal" MG weakness. Oh well, I got a taste of what real normal is like yesterday and it was nice. I hope it comes back soon.
Second- topic: Double Standards.
You will often hear/see people saying "I'm sooo sick!" or "I hate this cold I can't do anything!" or "The flu is the worst" or so on and so forth.... said by generally healthy people when sick. When this happens what do we do? We say "feel better!" or "hope you get well soon!" etc. We empathize with them and sometimes sympathize. Take it a step further if a generally healthy person lands in the hospital or needs surgery for say a broken elbow, what happens? We send them cards and flowers and care packages. We want them to get well! At the same time we allow them this time to take a break from life so to speak, to rest and recover. All that is fine and dandy, I don't think it should be done any other way. But...
Why is there a double standard?
What I mean is this. I am chronically sick, as are all of my MG and POTS friends, and many others with other illnesses such as Lupus, etc. Chronically sick means at mostly any given point in time we have one or more symptoms, typically ranging on many more symptoms. Every single second of every single hour of every single day we are fighting the battle of sickness. Maybe it's not a cough or a runny nose or throwing up. Maybe it's not how you picture or have experienced being "sick", but we are still sick. And it doesn't go away aside from those rare moments like yesterday, where it wasn't even gone but better, or if we have the chance of going into remission. Even then typically it is never gone, again only "better" and "better" doesn't at all mean "good". For example, myself, here is a condensed list of symptoms I experience for the most part every single day that you cannot see (and in no way inclusive of the many other symptoms that come and go a little less often):
muscle weakness
brain fog
dizziness
lightheaded/faint feeling
nausea
trouble focusing eyes
tachycardia (too high heart rate)
bradycardia (too low heart rate)
trouble breathing
ringing ears nonstop
pain
extreme fatigue/tiredness
And yet what do we with chronic illness most typically hear? "You look fine." "Haven't you found a job yet?" "Maybe you should just eat healthier." "It's just anxiety." "Geeze you're no fun anymore." "Canceling, again?" etc. etc.
What is happening here is those who are generally healthy and occasionally get sick are given a break and given sympathy and help while recovering... while those who are chronically sick are rarely given that break, sympathy or recovery time which is so very needed. Those who are generally healthy and get sick are expected to stay home from work... while those who are chronically sick are expected TO work. Those who are generally healthy and get sick are expected not to do laundry, cook or clean and let others help out... while those who are chronically sick are expected to do all the above and still go out with friends too. This is a complete double standard.
It is true that those who are generally healthy don't and can't understand what it's like to be chronically ill and can't picture it especially if they can't see it, but that doesn't mean it doesn't exist. That doesn't mean it's something to ignore. The whole point of my blog is awareness. If you are generally healthy, imagine when you get sick and how horrible you feel. Imagine that as every single day of your life... every single moment. It NEVER ends. Sounds tough doesn't it? It is. So please give us, the chonically ill, a break. Give us more credit. Stop judging us because we typically already do plenty more than we should be doing. Sometimes we even redefine what it means to be strong.
Your sickness means staying home from work, maybe maybe on a rare occasion a short trip to the hospital. Our sickness means frequent visits to the doctor and hospital, more blood draws than we can count, knowing names/medical terms of things that only the medical teams should know because we've been through it all, and that overdoing it, especially if we have MG, could literally mean the difference between a day laying in a bed or being rushed to the ER and put on a ventilator.
It's not fun to be sick, and it's nice to have support when we are... whether it's for a couple days, or for a lifetime.
Second- topic: Double Standards.
You will often hear/see people saying "I'm sooo sick!" or "I hate this cold I can't do anything!" or "The flu is the worst" or so on and so forth.... said by generally healthy people when sick. When this happens what do we do? We say "feel better!" or "hope you get well soon!" etc. We empathize with them and sometimes sympathize. Take it a step further if a generally healthy person lands in the hospital or needs surgery for say a broken elbow, what happens? We send them cards and flowers and care packages. We want them to get well! At the same time we allow them this time to take a break from life so to speak, to rest and recover. All that is fine and dandy, I don't think it should be done any other way. But...
Why is there a double standard?
What I mean is this. I am chronically sick, as are all of my MG and POTS friends, and many others with other illnesses such as Lupus, etc. Chronically sick means at mostly any given point in time we have one or more symptoms, typically ranging on many more symptoms. Every single second of every single hour of every single day we are fighting the battle of sickness. Maybe it's not a cough or a runny nose or throwing up. Maybe it's not how you picture or have experienced being "sick", but we are still sick. And it doesn't go away aside from those rare moments like yesterday, where it wasn't even gone but better, or if we have the chance of going into remission. Even then typically it is never gone, again only "better" and "better" doesn't at all mean "good". For example, myself, here is a condensed list of symptoms I experience for the most part every single day that you cannot see (and in no way inclusive of the many other symptoms that come and go a little less often):
muscle weakness
brain fog
dizziness
lightheaded/faint feeling
nausea
trouble focusing eyes
tachycardia (too high heart rate)
bradycardia (too low heart rate)
trouble breathing
ringing ears nonstop
pain
extreme fatigue/tiredness
And yet what do we with chronic illness most typically hear? "You look fine." "Haven't you found a job yet?" "Maybe you should just eat healthier." "It's just anxiety." "Geeze you're no fun anymore." "Canceling, again?" etc. etc.
What is happening here is those who are generally healthy and occasionally get sick are given a break and given sympathy and help while recovering... while those who are chronically sick are rarely given that break, sympathy or recovery time which is so very needed. Those who are generally healthy and get sick are expected to stay home from work... while those who are chronically sick are expected TO work. Those who are generally healthy and get sick are expected not to do laundry, cook or clean and let others help out... while those who are chronically sick are expected to do all the above and still go out with friends too. This is a complete double standard.
It is true that those who are generally healthy don't and can't understand what it's like to be chronically ill and can't picture it especially if they can't see it, but that doesn't mean it doesn't exist. That doesn't mean it's something to ignore. The whole point of my blog is awareness. If you are generally healthy, imagine when you get sick and how horrible you feel. Imagine that as every single day of your life... every single moment. It NEVER ends. Sounds tough doesn't it? It is. So please give us, the chonically ill, a break. Give us more credit. Stop judging us because we typically already do plenty more than we should be doing. Sometimes we even redefine what it means to be strong.
Your sickness means staying home from work, maybe maybe on a rare occasion a short trip to the hospital. Our sickness means frequent visits to the doctor and hospital, more blood draws than we can count, knowing names/medical terms of things that only the medical teams should know because we've been through it all, and that overdoing it, especially if we have MG, could literally mean the difference between a day laying in a bed or being rushed to the ER and put on a ventilator.
It's not fun to be sick, and it's nice to have support when we are... whether it's for a couple days, or for a lifetime.
Friday, December 13, 2013
Touched by an Angel
I'm titling this post as that because of this... It was the day before Thanksgiving. I was extremely stressed out as well as very aggravated about something. At that very moment I saw what I can best describe looking like a pen on fire in the air. No worries, I was later told it was a floater, never had one before. But at that moment, what went through my head? First, for a sudden moment I was scared, what the heck was I seeing? Second, I wasn't so much scared as I was in calm, the feeling overcame me that it could be an angel looking after me. That may sound weird to you but you know what, maybe it was. And even if it wasn't it's better to think it was an angel than my eyes are going or something worse. So an angel it was.
Since then, this has transpired...
A few weeks ago I decided to try something. It has been said by some MG patients that Manganese, the supplement, can act as Mestinon (our MG med) does. I took it and initially felt very weak. I thought maybe it is like Mestinon where too much can make you worse. Instead of taking it daily, I took it a little more than once a week. At the same time I was taking Mestinon in between but less and less.
About a week ago, I stopped Mestinon all together. Please if you are an MG patient reading this do not stop any meds without discussing it with your doctor and under his/her guidance. So for the first time in about a year and a half, I am not on any MG meds... unless you consider Manganese which is acting like Mestinon for me. I didn't tell anyone because it's not like I was any better and it's not like I'm off everything all together. And the only reason I'm not on any other MG med when I really should be is because my doctor is too scared to treat me with all the serious side effects I get.
Then the past couple days I've been having serious brain fog. I have had trouble making my coffee, almost threw a banana peel in the sink instead of the garbage, and who knows what else because I can't remember. My brain feels broken. This morning it continued but along with it came this HUGE surge of energy of some sort. I don't know what the heck was happening. Honestly what I wanted to do was run, just run run run! I had to be somewhat smart in what I did though because most likely it was a POTS adrenalin surge and with it would come a huge crash to follow.
Guess what I did? For the first time in a year and a half... I walked on a treadmill!!!! Now, it was only 10 minutes and in that 10 minutes I only walked just over 1/3 mile. But oh my goodness!!! It was amazing to do something "normal!" And then I forced myself to stop because I was monitoring my heart rate and it was at 160... which it's been even higher just standing but still that is not good and that is a sign to lay down (POTS). But what came along with this? Well the treadmill is in the basement, which meant I walked down and up the stairs also! Another thing I don't do often and haven't done regularly in about a year!
After, I still felt like I had energy but again I had to be smart so I rested. While resting came the crash. Now I'm not sure if the biggest crash hasn't arrived yet or if its not going to arrive, but it was more mild. My upper body is actually more exhausted than my lower body, but I gave a few punches to the punching bag while I was down there too so maybe that's why haha! My eyes are definitely out of focus, but that's nothing new. And oddly with the use and depletion of my energy, my brain fog seems to have improved slightly.
So what was this? What do all of these things transpiring over the past few weeks add up to? I don't know. I can be hopeful and think perhaps MG remission and now I "only" have to deal with POTS, but that's kind of unlikely due to the symptoms I still experience. Don't read into this the wrong way, I'm definitely still experiencing all of my symptoms, but maybe they are a little more mild, a little less frequent.
I don't know what any of this means, but maybe perhaps I really was touched by an angel... Perhaps God is answering my prayers.
and receive from him anything we ask, because we keep his commands and do what pleases him. 1 John 3:22
Since then, this has transpired...
A few weeks ago I decided to try something. It has been said by some MG patients that Manganese, the supplement, can act as Mestinon (our MG med) does. I took it and initially felt very weak. I thought maybe it is like Mestinon where too much can make you worse. Instead of taking it daily, I took it a little more than once a week. At the same time I was taking Mestinon in between but less and less.
About a week ago, I stopped Mestinon all together. Please if you are an MG patient reading this do not stop any meds without discussing it with your doctor and under his/her guidance. So for the first time in about a year and a half, I am not on any MG meds... unless you consider Manganese which is acting like Mestinon for me. I didn't tell anyone because it's not like I was any better and it's not like I'm off everything all together. And the only reason I'm not on any other MG med when I really should be is because my doctor is too scared to treat me with all the serious side effects I get.
Then the past couple days I've been having serious brain fog. I have had trouble making my coffee, almost threw a banana peel in the sink instead of the garbage, and who knows what else because I can't remember. My brain feels broken. This morning it continued but along with it came this HUGE surge of energy of some sort. I don't know what the heck was happening. Honestly what I wanted to do was run, just run run run! I had to be somewhat smart in what I did though because most likely it was a POTS adrenalin surge and with it would come a huge crash to follow.
Guess what I did? For the first time in a year and a half... I walked on a treadmill!!!! Now, it was only 10 minutes and in that 10 minutes I only walked just over 1/3 mile. But oh my goodness!!! It was amazing to do something "normal!" And then I forced myself to stop because I was monitoring my heart rate and it was at 160... which it's been even higher just standing but still that is not good and that is a sign to lay down (POTS). But what came along with this? Well the treadmill is in the basement, which meant I walked down and up the stairs also! Another thing I don't do often and haven't done regularly in about a year!
After, I still felt like I had energy but again I had to be smart so I rested. While resting came the crash. Now I'm not sure if the biggest crash hasn't arrived yet or if its not going to arrive, but it was more mild. My upper body is actually more exhausted than my lower body, but I gave a few punches to the punching bag while I was down there too so maybe that's why haha! My eyes are definitely out of focus, but that's nothing new. And oddly with the use and depletion of my energy, my brain fog seems to have improved slightly.
So what was this? What do all of these things transpiring over the past few weeks add up to? I don't know. I can be hopeful and think perhaps MG remission and now I "only" have to deal with POTS, but that's kind of unlikely due to the symptoms I still experience. Don't read into this the wrong way, I'm definitely still experiencing all of my symptoms, but maybe they are a little more mild, a little less frequent.
I don't know what any of this means, but maybe perhaps I really was touched by an angel... Perhaps God is answering my prayers.
and receive from him anything we ask, because we keep his commands and do what pleases him. 1 John 3:22
Friday, December 6, 2013
Exciting News!
Obstacles are going to come our way, that's a given. What we do with those obstacles is what matters. Why not overcome then instead of trying to fight them or walk away from then? That's what I did and it's been quite the blessing.
This blog would have never happened if it weren't for MG. Now more are aware of a rare disease that they may not have known of before. I also started my second blog Strength by Faith
A "shop" online was created in which I've sold shirts and other items to promote awareness. Again, never would have I thought to do such a thing if it weren't for MG. Fight MG as well as Dysautonomia Awareness
And today I completed what has been my goal for some time now, the final piece of my MG project, for lack of better term. I opened an Etsy shop!
This is very exciting for me! Why? Because again it proves to me that I can take something that is trying to bring me down and use it to stand right back up. Though I am considered disabled, I will not allow myself to stay down. I will get up, over and over and over if I have to. Physical ability is only one portion of our overall abilities. Don't look at what you lost, look at what you have and what you can do with what you have! I will promote awareness of this disease. I will fight for my own life and support the fight of others. Together we can do this! Together we ARE doing this!
And so here you go, my Etsy shop, or at least the beginning of it. For those who aren't familiar with Etsy, it is like an online shop... but unlike my other shop at Cafe Press, where I design the items through the internet and Cafe Press sells them... with Etsy, I literally create/design my items, right here in the house, then I take my own pictures of them, post them, and others can order them from me, and I literally mail them out. With my Cafe Press items, I have so far donated the entire amounts made to the MG community. With my Etsy shop, I do plan to continue to donate but I also need to cover mycosts of making these items. So I'll figure that out as we go.
Please share with those who have MG, know someone who has MG, or with anyone... after all, my goal all along has been MG awareness. These are some perfect gifts for Christmas for your loved ones fighting this battle or for you all with MG to give to others to spread the word. Thank you all for checking it out!
https://www.etsy.com/shop/ChronicallyCheerful
This blog would have never happened if it weren't for MG. Now more are aware of a rare disease that they may not have known of before. I also started my second blog Strength by Faith
A "shop" online was created in which I've sold shirts and other items to promote awareness. Again, never would have I thought to do such a thing if it weren't for MG. Fight MG as well as Dysautonomia Awareness
And today I completed what has been my goal for some time now, the final piece of my MG project, for lack of better term. I opened an Etsy shop!
This is very exciting for me! Why? Because again it proves to me that I can take something that is trying to bring me down and use it to stand right back up. Though I am considered disabled, I will not allow myself to stay down. I will get up, over and over and over if I have to. Physical ability is only one portion of our overall abilities. Don't look at what you lost, look at what you have and what you can do with what you have! I will promote awareness of this disease. I will fight for my own life and support the fight of others. Together we can do this! Together we ARE doing this!
And so here you go, my Etsy shop, or at least the beginning of it. For those who aren't familiar with Etsy, it is like an online shop... but unlike my other shop at Cafe Press, where I design the items through the internet and Cafe Press sells them... with Etsy, I literally create/design my items, right here in the house, then I take my own pictures of them, post them, and others can order them from me, and I literally mail them out. With my Cafe Press items, I have so far donated the entire amounts made to the MG community. With my Etsy shop, I do plan to continue to donate but I also need to cover mycosts of making these items. So I'll figure that out as we go.
Please share with those who have MG, know someone who has MG, or with anyone... after all, my goal all along has been MG awareness. These are some perfect gifts for Christmas for your loved ones fighting this battle or for you all with MG to give to others to spread the word. Thank you all for checking it out!
https://www.etsy.com/shop/ChronicallyCheerful
Friday, November 22, 2013
Meds attacking me
If you haven't read the post titled "Oh it's BIG" read that first, or what is to come won't make much sense.
I've been on the medication for about 2 weeks now...upping the dose so so slowly. The goal is a whole pill twice a day. I was able to cut the pill down to 1/8 pill twice a day to start. The first night was REALLY rough. It's a miracle I didn't crash to the ground at 2am. I woke up feeling so incredibly sick and about to pass out any second. I got up to change the battery on my heart monitor (oh yeah I'm wearing a 30 day heart monitor- but don't worry I can take it off to shower lol) I immediately just about fell back into bed and laid down. The next day still felt pretty sick, but then it was ok. I think it was that initial effect of my body saying "no!" By ok I mean I've been feeling weaker than usual, more stomach aches/nausea and dizziness than usual, but not to the point of preventing me from doing the things I absolutely have to do... until today.
Yesterday I felt kind of sick. I had aquatic therapy and didn't think I would make it. Well it just so happened I had an open cut or something on my leg so we only did massage therapy. Exactly what I needed, laying there getting a massage. Except, it wasn't. It was exactly what I didn't need. There were two patients there before me and them and the two that work there were talking away SO loudly- you know how women get when they are excited about something- that's what it was. And what was it about? Food. The last thing I wanted to hear about as my stomach was not at all feeling good. Sensory overload was in effect and I probably looked really rude but I had to completely tune them out. Side note- we are ending aquatic therapy. When I just recently saw my neurologist we decided it doesn't seem to be helping much if at all. My thought- duh, exercise makes MG worse, but I did it to prove to him it's not "just POTS" affecting me right now.
Anyways, back to my story. Today I woke up so much worse. Oh my goodness. I'm typing this now feeling pretty sick... and I say pretty sick as opposed to really sick because as long as I sit or lay and barely move and don't eat or drink anything then I don't reach the point of really sick. But that's pretty difficult to do. I have to get up about once an hour if even just to pace the room because of the whole blood clot risk. And I have to attempt to eat and drink something because of course not eating or drinking is not good for you, but it's especially not good when you have MG and POTS. My body is so weak. My low grade fever is back but higher than my normal low grade fever. I took zofran which helped a little but not enough to allow me to eat or do anything normally. Oh and my brain isn't working very well either. I can tell my thoughts are coming out scattered right now but when I was typing to someone earlier I couldn't remember anything. Anyways, about all I have in me right now are some carrots and celery. I'm going to try to eat a few more later and add some peanut butter to it. I've lost 5 lbs since starting the medicine which is ok since I gained some since my return to Chicago (darn you pizza and beef!) but if I keep losing that wouldn't be good. This is so not fun.
Right now I just pray and pray and pray that these symptoms subside in time for Thanksgiving. Last year this time I was in the hospital for 6 weeks. I don't want a repeat. I thank God I'm at home, or my parents home, as opposed to the hospital. I pray that I can continue to get in enough fluids here that I don't need IV fluids in the hospital. I pray that the medication making me worse before it makes me better only happens this once and doesn't last long. I pray that I can eat enough to not pass out. Please God hear my prayers and help me through this. And I thank You Lord for staying with me and carrying me through it as You have been! You are my strength and my everything.
I keep telling myself I can do this. I keep reminding myself I am more than the symptoms that try to bring me down. I keep thanking God for strengthening me through it all. I need to stay focused on getting healthy and remember this is just a short term thing that is happening in order for me to get healthier. I forget the fact that their are no promises when it comes to your health and I forget the idea that remission is not in my future. I can do this! I can do all things through Christ who strengthens me. Philippians 4:13 I keep repeating that verse because I literally live by it these days.
Either last night or this morning (when you're half a sleep it all blends together) I thought about something. So many people say "don't let your illness/disease/condition/sickness/whatever define you." I disagree. Let it define you! Just don't let it defeat you. My illness does define me. Why? Because I fight through it every single second of every single day and due to the fact that I'm still here I can say I'm beating it. It's not something I can walk away from like those who define themselves by their job or even other people, that they can walk away from. If you can't beat them, join them sort of thing... I took what I was given and I turned it into a passion of writing and an enjoyment of designing. The devil may be trying to use this illness to knock me down, but with God I will use it to keep on stepping up. If I didn't have MG or POTS or candida, I wouldn't be the person I am today. I wouldn't have opened my eyes and see the value in each and every single thing and person. I wouldn't have lost so much anxiety and fear and gained so much trust in the Lord. I wouldn't have known that I could do this completely on my own (with God of course and my parents and support of friends but you know what I mean). So yes, I let this illness define me because I'm a better person because of it.
Fall down seven, stand up eight.... or in my case fall down 4572543754, stand up 4572543755.
Praise God! Amen!
Wednesday, November 20, 2013
Sense for cents
I've used a couple different analogies to explain MG before. Now let's use another one. Pennies in a jar.
Let's imagine we all have a jar of pennies. Here is the difference. If you are generally healthy, without a chronic disabling condition, your jar is HUGE. Pretend with me here. Your jar is a 3 foot tall 2 foot wide jar... the biggest jar you've ever seen... completely filled with pennies! Wow that's a lot of pennies! My jar, or anyone who has a chronic disabling condition- their jar, is a tiny jar. It is a 2 inch high by 1 inch wide jar, very very tiny. And, the jar is only half filled with pennies.
For every single thing you do throughout the day, you have to give a penny to it. When your pennies run out, that's it. When your pennies run out you have to sit or lay down quietly and rest until the next day with the next jar of pennies. So let's imagine everything we have to hand a penny out for...
You start imagining the following... going for a run, walking the dog, cooking the family meals, going shopping, changing clothes until you find the perfect outfit, organizing a room, mowing the lawn, wrapping some gifts, driving here there everywhere, washing dishes, doing laundry, going to a party, meeting friends for drinks, working at your job, texting on your phone again and again and again...
I start imagining the following...
Using my arms: picking up a glass of water, checking email, turning on the light, opening the door, closing the door, turning off the light, turning on the shower, lifting arms to wash hair, blow drying hair, combing hair, putting on make up, changing clothes, hanging up the towel, putting on shoes, opening the pill bottle, closing the pill bottle, opening the fridge, closing the fridge, pouring a jug of milk, opening the cabinet, picking up a bowl, opening the pantry, pouring cereal, opening a drawer, eating with a spoon, writing something down, holding the phone up to my ear, getting the mail, making a sandwich, opening a bottle of water, holding a book to read, picking up something that fell, making the bed, washing face...
Using my legs: walking to the bathroom, walking up stairs, walking down stairs, walking to the kitchen, standing up, standing to take a shower, standing to fix a meal, walking to get the mail, walking to the car, walking into the doctor, stepping into the bathtub, stepping out of the bathtub, walking up a few steps, walking while carrying something, bending to pick something up, bending to tie my shoe, picking my foot up to tie my shoe...
Using my eyes: reading, checking email, typing, writing, reading a book, watching tv, conversing with someone, looking through the mail, fixing hair, putting on makeup, fixing a meal, looking for something, checking texts on a cell phone, looking for the right pill to take, looking at the calendar, going through wallet, finding an outfit to wear, finding shoes to wear...
Using my back/chest/abs/neck: standing, walking, sitting, bending over, reaching up, reaching down, turning, opening doors, closing doors, lifting something, showering, changing clothes, putting something away, breathing...
Using our jaw/throat: smiling, chewing, swallowing, talking, drinking, laughing...
You were able to do everything listed even if you didn't want to, even if you decided not to, without even thinking about it... and you still have pennies left in your jar. My pennies couldn't even cover all the things I imagined, and none of the things you imagined. Therefore I had to make some choices.
I chose to take a shower every other day instead of every day. I chose to let my hair air dry instead of dry with a hair dryer. I chose to ask someone else to cook for me. I chose to ask someone else to do my laundry for me. I chose to ask someone else to drive me to the doctor. I chose to let someone else do the grocery shopping. I chose to get pushed in a wheel chair instead of walk.
However, they weren't really choices at all. They were adjustments I had to make in life in order to have enough pennies in my jar to make it through the day... each and every day. Sometimes life surprises me with a few more pennies than usual, but never a full jar. Other times life takes away some pennies and I have to find even more things I can omit from the day.
This is life with MG. A jar looks "just fine" and at the beginning of the day we have quite a few shiny pennies and seem to even do "just fine" as we walk, talk, smile and breathe. But as the day goes on, after a moment of stress or heat or wrong medication, or sometimes even out of nowhere, those pennies get used up and we have to wisely pick and choose how to use the rest.
It may only be a penny and we may only have a few, but these pennies are so incredibly valuable to us.
Let's imagine we all have a jar of pennies. Here is the difference. If you are generally healthy, without a chronic disabling condition, your jar is HUGE. Pretend with me here. Your jar is a 3 foot tall 2 foot wide jar... the biggest jar you've ever seen... completely filled with pennies! Wow that's a lot of pennies! My jar, or anyone who has a chronic disabling condition- their jar, is a tiny jar. It is a 2 inch high by 1 inch wide jar, very very tiny. And, the jar is only half filled with pennies.
For every single thing you do throughout the day, you have to give a penny to it. When your pennies run out, that's it. When your pennies run out you have to sit or lay down quietly and rest until the next day with the next jar of pennies. So let's imagine everything we have to hand a penny out for...
You start imagining the following... going for a run, walking the dog, cooking the family meals, going shopping, changing clothes until you find the perfect outfit, organizing a room, mowing the lawn, wrapping some gifts, driving here there everywhere, washing dishes, doing laundry, going to a party, meeting friends for drinks, working at your job, texting on your phone again and again and again...
I start imagining the following...
Using my arms: picking up a glass of water, checking email, turning on the light, opening the door, closing the door, turning off the light, turning on the shower, lifting arms to wash hair, blow drying hair, combing hair, putting on make up, changing clothes, hanging up the towel, putting on shoes, opening the pill bottle, closing the pill bottle, opening the fridge, closing the fridge, pouring a jug of milk, opening the cabinet, picking up a bowl, opening the pantry, pouring cereal, opening a drawer, eating with a spoon, writing something down, holding the phone up to my ear, getting the mail, making a sandwich, opening a bottle of water, holding a book to read, picking up something that fell, making the bed, washing face...
Using my legs: walking to the bathroom, walking up stairs, walking down stairs, walking to the kitchen, standing up, standing to take a shower, standing to fix a meal, walking to get the mail, walking to the car, walking into the doctor, stepping into the bathtub, stepping out of the bathtub, walking up a few steps, walking while carrying something, bending to pick something up, bending to tie my shoe, picking my foot up to tie my shoe...
Using my eyes: reading, checking email, typing, writing, reading a book, watching tv, conversing with someone, looking through the mail, fixing hair, putting on makeup, fixing a meal, looking for something, checking texts on a cell phone, looking for the right pill to take, looking at the calendar, going through wallet, finding an outfit to wear, finding shoes to wear...
Using my back/chest/abs/neck: standing, walking, sitting, bending over, reaching up, reaching down, turning, opening doors, closing doors, lifting something, showering, changing clothes, putting something away, breathing...
Using our jaw/throat: smiling, chewing, swallowing, talking, drinking, laughing...
You were able to do everything listed even if you didn't want to, even if you decided not to, without even thinking about it... and you still have pennies left in your jar. My pennies couldn't even cover all the things I imagined, and none of the things you imagined. Therefore I had to make some choices.
I chose to take a shower every other day instead of every day. I chose to let my hair air dry instead of dry with a hair dryer. I chose to ask someone else to cook for me. I chose to ask someone else to do my laundry for me. I chose to ask someone else to drive me to the doctor. I chose to let someone else do the grocery shopping. I chose to get pushed in a wheel chair instead of walk.
However, they weren't really choices at all. They were adjustments I had to make in life in order to have enough pennies in my jar to make it through the day... each and every day. Sometimes life surprises me with a few more pennies than usual, but never a full jar. Other times life takes away some pennies and I have to find even more things I can omit from the day.
This is life with MG. A jar looks "just fine" and at the beginning of the day we have quite a few shiny pennies and seem to even do "just fine" as we walk, talk, smile and breathe. But as the day goes on, after a moment of stress or heat or wrong medication, or sometimes even out of nowhere, those pennies get used up and we have to wisely pick and choose how to use the rest.
It may only be a penny and we may only have a few, but these pennies are so incredibly valuable to us.
Wednesday, November 13, 2013
Fear
Have no fear.
God is here.
I walked an entire grocery store yesterday. Whoa. Normally I use the wheel chair. I did it because I was having a "good" or stronger moment so I thought I might as well make use of this, and so I did. Afterwards, I thought that was a bad idea as my body went weak. I over did it. Sometimes, maybe actually most of the time, it doesn't catch up until later. I pay for it minutes, hours, the next day or even multiple days later. And so today I thought I will rest and watch movies. I wanted to blog. I have lots to blog about. I'm way behind on thoughts vs posts. But I said no, rest is needed. And then I turned on a movie.
In the previews before the movie was a boy and father figure, after the boy's dad passed, standing in the middle of a country road looking out into the world. I thought to myself "boy it would be nice to be out in the middle of 'nowhere' but because of MG and POTS I need to always be somewhat close enough to a hospital." I caught myself there and then I thought I must write...
I don't need to be close to a hospital. What do I need to be close to? God. God and only God. I can go out in the middle of nowhere. I can do anything. Anything. As long as I stay close to God. There is no point and no need to fear anything. I don't need to fear getting worse health-wise, I don't need to fear not being near a hospital, I don't need to fear death even because I know I am going to Heaven because I have Jesus in my heart. No fear but God fear.
This thought is so freeing. I can do ANYTHING... through Christ who strengthens me. Philippians 4:13. I absolutely love that verse. At times I forget and revert back to the fear and the worry and even the why me. But you know what that is doing? That is me saying "God I don't trust that you can get me through this." Well I do trust that He can and I know that He will. But I must stay close to Him.
I could go on and on and pull out Bible verses but I feel my point was made and I feel that's all that needed to be said. However, now that I'm already writing I must continue...
Just because we can doesn't mean we should. For some that might mean lying, stealing, taking advantage of, gossiping, hurting, cheating, etc etc. Yeah you can do any of that, but if you have God, you won't unless it is his will or unless you choose to go against Him, which personally I highly advise against. For me this means more than that. Just because I can doesn't mean I should.
I've said before I can do just about anything for a short time. I can run... to the thermostat to change the temperature when I'm freezing. I can play basketball... by tossing one ball and being done after that. I can participate in a 5k... by using a wheel chair. I could walk an entire grocery store like I did yesterday. I could push myself past the point of any of those. But just because I can doesn't mean I should. I know what the outcome will most likely be.
Why would God allow that? Why would God "let" me have an illness? Why me?
Why me? Maybe it's not meant to go against me, maybe it's meant FOR me, and more so for others. If I didn't have this illness, I never would have taken the time to start a blog. I never would have open my eyes to the value of all that surrounds me. I never would have met and become friends with so many absolutely amazing people. I never would have had such a testimony to glorify God in.
They say it's not about the destination but the journey. It's partially true. My destination is Heaven. That is my home and earth is a place I am passing through. You never know when your time will come and when it does it may in fact be so sudden that you don't realize it. That is what I live for. And in doing so I would love to welcome others onto that narrow path that leads there. And there we have the journey. Every little moment that adds up to that which we call life. Every person, every thing, every thought, every moment.
So I live to glorify Him, and if the way He wants me to do so is through MG and POTS and candida and anything else that may or may not come my way, so be it. I used to be so afraid and concerned about everything. Of course I do still have my moments, but for the most part in the grand scheme of life I realized it is so much more and worry is a waste of time. As long as I am living righteously, living for Him, then live- just live. Do what I can, when I can, how I can and give it my all.
I'm going to write a book one day. No, I'm going to publish a book one day. And if I don't make it to that day, please someone finish it out for me. I'm also going to live in North Carolina. Why? Not because I want to. I do, but, it's because I feel God calling me to. Live for Him and you won't go wrong. It may be tough but it's nothing compared to Jesus getting nailed through His body suffering on the cross. If you look at it that way, I and all of you all have it easy. So accept Jesus as your Lord and Savior and then have no fear.
I realize maybe this should have been in my other blog, but you know what, it's here. Maybe there is a reason for that. And maybe not. But I'm not going to worry about it. Have a blessed day.
God is here.
I walked an entire grocery store yesterday. Whoa. Normally I use the wheel chair. I did it because I was having a "good" or stronger moment so I thought I might as well make use of this, and so I did. Afterwards, I thought that was a bad idea as my body went weak. I over did it. Sometimes, maybe actually most of the time, it doesn't catch up until later. I pay for it minutes, hours, the next day or even multiple days later. And so today I thought I will rest and watch movies. I wanted to blog. I have lots to blog about. I'm way behind on thoughts vs posts. But I said no, rest is needed. And then I turned on a movie.
In the previews before the movie was a boy and father figure, after the boy's dad passed, standing in the middle of a country road looking out into the world. I thought to myself "boy it would be nice to be out in the middle of 'nowhere' but because of MG and POTS I need to always be somewhat close enough to a hospital." I caught myself there and then I thought I must write...
I don't need to be close to a hospital. What do I need to be close to? God. God and only God. I can go out in the middle of nowhere. I can do anything. Anything. As long as I stay close to God. There is no point and no need to fear anything. I don't need to fear getting worse health-wise, I don't need to fear not being near a hospital, I don't need to fear death even because I know I am going to Heaven because I have Jesus in my heart. No fear but God fear.
This thought is so freeing. I can do ANYTHING... through Christ who strengthens me. Philippians 4:13. I absolutely love that verse. At times I forget and revert back to the fear and the worry and even the why me. But you know what that is doing? That is me saying "God I don't trust that you can get me through this." Well I do trust that He can and I know that He will. But I must stay close to Him.
I could go on and on and pull out Bible verses but I feel my point was made and I feel that's all that needed to be said. However, now that I'm already writing I must continue...
Just because we can doesn't mean we should. For some that might mean lying, stealing, taking advantage of, gossiping, hurting, cheating, etc etc. Yeah you can do any of that, but if you have God, you won't unless it is his will or unless you choose to go against Him, which personally I highly advise against. For me this means more than that. Just because I can doesn't mean I should.
I've said before I can do just about anything for a short time. I can run... to the thermostat to change the temperature when I'm freezing. I can play basketball... by tossing one ball and being done after that. I can participate in a 5k... by using a wheel chair. I could walk an entire grocery store like I did yesterday. I could push myself past the point of any of those. But just because I can doesn't mean I should. I know what the outcome will most likely be.
Why would God allow that? Why would God "let" me have an illness? Why me?
Why me? Maybe it's not meant to go against me, maybe it's meant FOR me, and more so for others. If I didn't have this illness, I never would have taken the time to start a blog. I never would have open my eyes to the value of all that surrounds me. I never would have met and become friends with so many absolutely amazing people. I never would have had such a testimony to glorify God in.
They say it's not about the destination but the journey. It's partially true. My destination is Heaven. That is my home and earth is a place I am passing through. You never know when your time will come and when it does it may in fact be so sudden that you don't realize it. That is what I live for. And in doing so I would love to welcome others onto that narrow path that leads there. And there we have the journey. Every little moment that adds up to that which we call life. Every person, every thing, every thought, every moment.
So I live to glorify Him, and if the way He wants me to do so is through MG and POTS and candida and anything else that may or may not come my way, so be it. I used to be so afraid and concerned about everything. Of course I do still have my moments, but for the most part in the grand scheme of life I realized it is so much more and worry is a waste of time. As long as I am living righteously, living for Him, then live- just live. Do what I can, when I can, how I can and give it my all.
I'm going to write a book one day. No, I'm going to publish a book one day. And if I don't make it to that day, please someone finish it out for me. I'm also going to live in North Carolina. Why? Not because I want to. I do, but, it's because I feel God calling me to. Live for Him and you won't go wrong. It may be tough but it's nothing compared to Jesus getting nailed through His body suffering on the cross. If you look at it that way, I and all of you all have it easy. So accept Jesus as your Lord and Savior and then have no fear.
I realize maybe this should have been in my other blog, but you know what, it's here. Maybe there is a reason for that. And maybe not. But I'm not going to worry about it. Have a blessed day.
Monday, November 11, 2013
Oh its BIG
2010... 3 years ago... just months after initially getting sick and not getting well, I started doing my own research. I came upon something that I thought made perfect sense as the answer to my sickness, as a diagnosis. I brought it up to doctor after doctor and I was brushed off. So, I pushed it to the back of my mind.
3 years later... I WAS RIGHT.
I hate to say I told you so to anyone and I hate to sound arrogant because that is not my intent, but time and time and time again I am right about something... yet people go against me and make it much more difficult than it needs to be than if they just listened to me to begin with. I'm not an expert in anything but I know my body, I know God, and I know when I'm right. And I was right about this.
And so I will explain.
Obviously traditional medicine has not been working out for me. Furthermore I still face questioning and doubting by doctors and to be straight up, I'm sick of it. I have two serious diagnoses and just because you don't know how to treat them doesn't mean I should be left hanging. But perhaps God had a reason behind the stand still on my treatment.
A couple months ago I don't know what led me to it, but I found a website about functional medicine. Functional medicine combines traditional and alternative and more importantly, functional medicine tends to look for the cause and not just treat the symptoms even if the symptoms fall under a diagnosis. Sometimes functional medicine doctors are covered by insurance. Well I checked each one of the doctors listed on that website to my insurance and I found a couple who were covered. I researched those that were and chose one who happens to be about a 15 minute drive away. I had my initial visit a little over a month ago and then a follow up just a week ago.
He is the most thorough doctor I've ever encountered. He looked through all the old records I brought in, read through every single part of the extremely long paperwork I had to fill out, asked questions on it all, listened to me and examined me. And then he figured it out, part of it at least so far. And guess what? I didn't say a word about my thoughts on it until after he figured it out himself.
If you are a traditional doctor reading this or one who strictly believes only in traditional medicine, you can either stop reading right here or read on with an open mind outside of what you were taught in the books. To all others, I say that because this is something many traditional doctors do not believe in or if they do they claim it's not possible for anyone who LOOKS healthy, they claim you really just have to have cancer or HIV or look very very sick in order to have this. Again, some doctors are like robots reading out of books. (No not all and I know there are some very good ones.)
Let me first say, when I made my first attempt at blogging it was specifically on this diagnosis that I received now 3 years later. I talked ALL about it. Shame on myself for deleting that blog because of others saying garbage to me about it and discouraging me from doing my own research, figuring out my problem myself and going after my passion of writing. Shame on me for listening to people trying to bring me down instead of raise me up. I was right!
My new diagnosis (not to replace my other ones though): Candida!!!!!!
I pretty much remember most of what I learned 3 years ago so I'll just cover what I remember for now. Candida is yeast overgrowth within the body... no not just thrush or any other visible yeast. It is a systemic overgrowth throughout the insides of your body which primarily reside in and start in the digestive tract. The way you can get this is basically your body out of balance- being given too many medications especially antibiotics, inhalers and steroids, eating too much sugar/yeast or unhealthy/processed foods, and you are more susceptible to it if you are already sick.
What does candida do?
Everything I have encountered. It can affect your entire body pretty much in any way. To name a few of the very many symptoms, all of which I have- dizziness, fatigue, brain fog, weight gain or loss, reflux, nausea, cramping, sore throat, post nasal drip, ear infections, ringing ears, sensitivities to food and environment, joint pain etc. etc. It can harm you to the point of being unable to function.
How do you treat it?
That's the very tough part. VERY tough. There are 3 options here, including all of them is the best bet. One- pharmaceutical- but not the antibiotics and other stuff that makes you worse. Instead a medication to go against all those other ones, to kill the yeast overgrowth. One of these is less harsh on the body but sometimes the yeast become resistant to it. Some others are more harsh and you need your liver and kidneys checked during treatment. Both can take a very long time to kill off the yeast especially if the infection is very wide spread and severe. Two- non-pharmaceutical- you can take certain supplements as natural ways to kill off the yeast such as garlic, caprylic acid, oil of oregano and more. Again a very long process and you have to switch up the treatments to "fool" the yeast in essence. Furthermore, you must take probiotics at a very high dosage to give your body more good bacteria to fight the bad stuff. Three- changing your diet. This isn't simple at all especially because everyone is different. The two biggest things to remove- sugar and yeast but most of us are also very sensitive to/made worse by dairy, processed foods/additives, and gluten. This doesn't leave much when you think about what you normally eat. Some things you might not think of that are bad for those who have candida- vinegar, mayonnaise, pizza, too much fruit, juices, sour cream, beer, wine... Treating candida is insanely difficult and a long long process, could be life long.
So how did I get it?
Simple. Exactly what I thought happened, happened. When it comes down to it, the doctors made me sick, really. They treated each symptom instead of putting it together and figuring it out. I was way over medicated. And since I had never really been sick before I didn't know any better, I trusted what they advised and I listened. I was literally on 50 medications within 9 months time. Society is taught that medicine is good. Well, medicine can be bad. Very very very bad, especially if used when it shouldn't be. That's what happened to me. Medicine made me sick instead of better.
So now what?
Well he wants me to try to eliminate everything I can from my diet. Before this, I already started doing the dairy free, started doing some gluten free, and for a long while have reduced my sugar and yeast intake as I know they bring on my symptoms very bad and I'm not much of a sweets person aside from my dear love of chocolate. I rarely eat fast food anymore either. Actually being on warfarin helped me as I HAD to have greens every single day in order to maintain my INR level. It got me into eating even healthier.
He is also treating me with a pharmaceutical medication to attack the candida. To start, he wants 3 months of treatment. Here's the thing with that. It has the good possibility of making me really really sick before I start (maybe) getting any better. That happens because of the attack against the candida and flushing them out of your system. You basically have to rebalance your body and then keep it that way. Because I am SO sensitive to medicine he is letting me start super low and up my dosage with time. He wants me on 1 full tab twice day 1,000,000 mg! OH my! But I started on 1/8 a tab twice a day. I should get an award for amazing pill cutter with that one! haha. Anyways, I started this yesterday. Already it's affecting me. Last night I woke up and almost fainted and got really sick. When I woke up my heart was going nuts and I was absolutely freezing. Today I'm not doing much of anything because my stomach is all out of whack and I'm so dizzy. I also was given Zofran to try to keep my stomach a little more under control.
After 3 months he wants to put me on a different medicine to try to push it a bit further. But pretty much forever, I have to watch what I eat and not take antibiotics, inhalers, steroids, etc unless absolutely needed... (try telling that to my other doctors!).
I don't think I'm making this sound nearly as serious as it is. It is really really bad and really serious. Unfortunately many people have it and don't know it but not to this extent. It's not just body out of balance as in take some vitamins and you'll be ok. It's one portion of your body that naturally lives in you got super out of control and took over and is attacking you. If untreated it will continue to attack you until you can't defend against it anymore. It pretty much really stinks. But I'm not reacting to it that much because of the fact that I've kind of been dealing with this mentally for 3 years.
What does this mean in regards to MG and POTS?
It MIGHT make it lessen if treatment is successful. He isn't saying candida is causing my MG (I'll get to that in a minute) but it might perhaps have something to do with all the POTS symptoms. The goal is just to make my body better in however way we can. It will be gradual and I will get worse first. I just hope I'm strong enough to not land in the hospital during this treatment. I also pray I have the support needed to get through this.
What else?
Here we go. Candida isn't the only thing. He thinks there are 2 other underlying causes, but this is the most serious and most important to tackle first. The other two things are something with low cortisol- so something about the whole fight or flight thing and my body's fatiguing so quickly. He isn't doing anything on this quite yet but said it is treated with steroids or cortisone... which slightly is a problem since steroids are on the no list for candida. Goodness I'm such a problem patient. And the other is this...
Epstein Barr Virus aka MONO... but not how you know it. I have it chronic or recurrent... meaning it either never leaves me or keeps coming back. This could explain a lot in regards to my overall energy level, rapid fatigue, weakness, a lot of things. He said we would attack this with a long term anti-viral to try to get the levels in my blood down. Here's the big thing- there is a link between Epstein Barr with both MG and POTS! It is thought that it could be the cause of either/both. Sooo... if we are able to attack the Epstein Barr and rid it from constantly being in me, we may in fact take care of the MG and/or POTS in return! How exciting is that!! But, I'm hesitant to get too pumped up on this one because he first wants to do research and see what would be the best way to go about this. Again it's a difficult one.
So, to conclude, my new functional medicine doctor believes the base/bottom/starting point/cause whatever you want to call it is 3 things- candida, a cortisol problem, and chronic/recurrent Epstein Barr. It's going to be one heck of a ride ahead, but at least I finally have someone I trust going in the same direction, in the driver's seat!
Here's to hoping this is the start of something amazing! Thank you all for your continued support and prayers as I begin this treatment. Thank you GOD for finally turning what I knew all along into a definite diagnosis with hopeful treatment.
3 years later... I WAS RIGHT.
I hate to say I told you so to anyone and I hate to sound arrogant because that is not my intent, but time and time and time again I am right about something... yet people go against me and make it much more difficult than it needs to be than if they just listened to me to begin with. I'm not an expert in anything but I know my body, I know God, and I know when I'm right. And I was right about this.
And so I will explain.
Obviously traditional medicine has not been working out for me. Furthermore I still face questioning and doubting by doctors and to be straight up, I'm sick of it. I have two serious diagnoses and just because you don't know how to treat them doesn't mean I should be left hanging. But perhaps God had a reason behind the stand still on my treatment.
A couple months ago I don't know what led me to it, but I found a website about functional medicine. Functional medicine combines traditional and alternative and more importantly, functional medicine tends to look for the cause and not just treat the symptoms even if the symptoms fall under a diagnosis. Sometimes functional medicine doctors are covered by insurance. Well I checked each one of the doctors listed on that website to my insurance and I found a couple who were covered. I researched those that were and chose one who happens to be about a 15 minute drive away. I had my initial visit a little over a month ago and then a follow up just a week ago.
He is the most thorough doctor I've ever encountered. He looked through all the old records I brought in, read through every single part of the extremely long paperwork I had to fill out, asked questions on it all, listened to me and examined me. And then he figured it out, part of it at least so far. And guess what? I didn't say a word about my thoughts on it until after he figured it out himself.
If you are a traditional doctor reading this or one who strictly believes only in traditional medicine, you can either stop reading right here or read on with an open mind outside of what you were taught in the books. To all others, I say that because this is something many traditional doctors do not believe in or if they do they claim it's not possible for anyone who LOOKS healthy, they claim you really just have to have cancer or HIV or look very very sick in order to have this. Again, some doctors are like robots reading out of books. (No not all and I know there are some very good ones.)
Let me first say, when I made my first attempt at blogging it was specifically on this diagnosis that I received now 3 years later. I talked ALL about it. Shame on myself for deleting that blog because of others saying garbage to me about it and discouraging me from doing my own research, figuring out my problem myself and going after my passion of writing. Shame on me for listening to people trying to bring me down instead of raise me up. I was right!
My new diagnosis (not to replace my other ones though): Candida!!!!!!
I pretty much remember most of what I learned 3 years ago so I'll just cover what I remember for now. Candida is yeast overgrowth within the body... no not just thrush or any other visible yeast. It is a systemic overgrowth throughout the insides of your body which primarily reside in and start in the digestive tract. The way you can get this is basically your body out of balance- being given too many medications especially antibiotics, inhalers and steroids, eating too much sugar/yeast or unhealthy/processed foods, and you are more susceptible to it if you are already sick.
What does candida do?
Everything I have encountered. It can affect your entire body pretty much in any way. To name a few of the very many symptoms, all of which I have- dizziness, fatigue, brain fog, weight gain or loss, reflux, nausea, cramping, sore throat, post nasal drip, ear infections, ringing ears, sensitivities to food and environment, joint pain etc. etc. It can harm you to the point of being unable to function.
How do you treat it?
That's the very tough part. VERY tough. There are 3 options here, including all of them is the best bet. One- pharmaceutical- but not the antibiotics and other stuff that makes you worse. Instead a medication to go against all those other ones, to kill the yeast overgrowth. One of these is less harsh on the body but sometimes the yeast become resistant to it. Some others are more harsh and you need your liver and kidneys checked during treatment. Both can take a very long time to kill off the yeast especially if the infection is very wide spread and severe. Two- non-pharmaceutical- you can take certain supplements as natural ways to kill off the yeast such as garlic, caprylic acid, oil of oregano and more. Again a very long process and you have to switch up the treatments to "fool" the yeast in essence. Furthermore, you must take probiotics at a very high dosage to give your body more good bacteria to fight the bad stuff. Three- changing your diet. This isn't simple at all especially because everyone is different. The two biggest things to remove- sugar and yeast but most of us are also very sensitive to/made worse by dairy, processed foods/additives, and gluten. This doesn't leave much when you think about what you normally eat. Some things you might not think of that are bad for those who have candida- vinegar, mayonnaise, pizza, too much fruit, juices, sour cream, beer, wine... Treating candida is insanely difficult and a long long process, could be life long.
So how did I get it?
Simple. Exactly what I thought happened, happened. When it comes down to it, the doctors made me sick, really. They treated each symptom instead of putting it together and figuring it out. I was way over medicated. And since I had never really been sick before I didn't know any better, I trusted what they advised and I listened. I was literally on 50 medications within 9 months time. Society is taught that medicine is good. Well, medicine can be bad. Very very very bad, especially if used when it shouldn't be. That's what happened to me. Medicine made me sick instead of better.
So now what?
Well he wants me to try to eliminate everything I can from my diet. Before this, I already started doing the dairy free, started doing some gluten free, and for a long while have reduced my sugar and yeast intake as I know they bring on my symptoms very bad and I'm not much of a sweets person aside from my dear love of chocolate. I rarely eat fast food anymore either. Actually being on warfarin helped me as I HAD to have greens every single day in order to maintain my INR level. It got me into eating even healthier.
He is also treating me with a pharmaceutical medication to attack the candida. To start, he wants 3 months of treatment. Here's the thing with that. It has the good possibility of making me really really sick before I start (maybe) getting any better. That happens because of the attack against the candida and flushing them out of your system. You basically have to rebalance your body and then keep it that way. Because I am SO sensitive to medicine he is letting me start super low and up my dosage with time. He wants me on 1 full tab twice day 1,000,000 mg! OH my! But I started on 1/8 a tab twice a day. I should get an award for amazing pill cutter with that one! haha. Anyways, I started this yesterday. Already it's affecting me. Last night I woke up and almost fainted and got really sick. When I woke up my heart was going nuts and I was absolutely freezing. Today I'm not doing much of anything because my stomach is all out of whack and I'm so dizzy. I also was given Zofran to try to keep my stomach a little more under control.
After 3 months he wants to put me on a different medicine to try to push it a bit further. But pretty much forever, I have to watch what I eat and not take antibiotics, inhalers, steroids, etc unless absolutely needed... (try telling that to my other doctors!).
I don't think I'm making this sound nearly as serious as it is. It is really really bad and really serious. Unfortunately many people have it and don't know it but not to this extent. It's not just body out of balance as in take some vitamins and you'll be ok. It's one portion of your body that naturally lives in you got super out of control and took over and is attacking you. If untreated it will continue to attack you until you can't defend against it anymore. It pretty much really stinks. But I'm not reacting to it that much because of the fact that I've kind of been dealing with this mentally for 3 years.
What does this mean in regards to MG and POTS?
It MIGHT make it lessen if treatment is successful. He isn't saying candida is causing my MG (I'll get to that in a minute) but it might perhaps have something to do with all the POTS symptoms. The goal is just to make my body better in however way we can. It will be gradual and I will get worse first. I just hope I'm strong enough to not land in the hospital during this treatment. I also pray I have the support needed to get through this.
What else?
Here we go. Candida isn't the only thing. He thinks there are 2 other underlying causes, but this is the most serious and most important to tackle first. The other two things are something with low cortisol- so something about the whole fight or flight thing and my body's fatiguing so quickly. He isn't doing anything on this quite yet but said it is treated with steroids or cortisone... which slightly is a problem since steroids are on the no list for candida. Goodness I'm such a problem patient. And the other is this...
Epstein Barr Virus aka MONO... but not how you know it. I have it chronic or recurrent... meaning it either never leaves me or keeps coming back. This could explain a lot in regards to my overall energy level, rapid fatigue, weakness, a lot of things. He said we would attack this with a long term anti-viral to try to get the levels in my blood down. Here's the big thing- there is a link between Epstein Barr with both MG and POTS! It is thought that it could be the cause of either/both. Sooo... if we are able to attack the Epstein Barr and rid it from constantly being in me, we may in fact take care of the MG and/or POTS in return! How exciting is that!! But, I'm hesitant to get too pumped up on this one because he first wants to do research and see what would be the best way to go about this. Again it's a difficult one.
So, to conclude, my new functional medicine doctor believes the base/bottom/starting point/cause whatever you want to call it is 3 things- candida, a cortisol problem, and chronic/recurrent Epstein Barr. It's going to be one heck of a ride ahead, but at least I finally have someone I trust going in the same direction, in the driver's seat!
Here's to hoping this is the start of something amazing! Thank you all for your continued support and prayers as I begin this treatment. Thank you GOD for finally turning what I knew all along into a definite diagnosis with hopeful treatment.
Saturday, November 9, 2013
An Honor to Share
Ok, forgive me, I'm not immediately getting to the second portion of my last post... the part that is my "big news."
I will, but I wanted to share some other very exciting news... I was chosen/asked to be featured in the Myasthenia Gravis Foundation of Illinois newsletter! I feel blessed to be able to share my story and recognized as someone who is an inspiration to others. I really cannot take credit. I send all of the glory up to God and praise Him for getting me through this! I thank Him for giving me the gift to write and to inspire; and if at any point I've done anything good intentionally or unintentionally for anyone, please thank God for I am only a vessel for Him to shine through.
The newsletter has not been posted to the MGF of IL site yet to link to so I am including below my write up. They titled it "If My Life Were a Building".
---
I will, but I wanted to share some other very exciting news... I was chosen/asked to be featured in the Myasthenia Gravis Foundation of Illinois newsletter! I feel blessed to be able to share my story and recognized as someone who is an inspiration to others. I really cannot take credit. I send all of the glory up to God and praise Him for getting me through this! I thank Him for giving me the gift to write and to inspire; and if at any point I've done anything good intentionally or unintentionally for anyone, please thank God for I am only a vessel for Him to shine through.
The newsletter has not been posted to the MGF of IL site yet to link to so I am including below my write up. They titled it "If My Life Were a Building".
---
29 years
ago I was brought into this world. My parents had high hopes for their very
healthy, active, little girl. Growing up with a type A personality, I had high
goals for myself as well. I had it all planned out, after graduating college
with honors I would travel the country as an event planner and eventually open
my own company.
If my
life were a building, just as it was getting built higher and higher, in 2008
story by story, the building started to be taken down. As the economy went
down, so did my company and the start of my career. The choice was made to move
to Texas which had a better economy, in 2009, but along with more jobs came
more allergies. Allergies turned into double pneumonia, twice, in 2010 and a
severe reaction to Levaquin making me temporarily unable to walk. Then started
a 2.5 year battle of trying to figure out why I couldn’t regain my health.
Each new
symptom brought a new prescription and each new prescription brought a new
symptom. Medication seemed to make me worse rather than better. Weakness,
fatigue, pain, trouble swallowing, trouble breathing, trouble seeing, trouble
digesting, feeling like I would faint, heart irregularities, brain fog... there
are too many symptoms to go through them all. More times than I could count I
was told it's "just anxiety." I decided, being overseen by a doctor,
that I would stop all medication and try things the natural way. I was improving...
until a serious infection that I didn't think I could beat in February 2012, in
which I was put on Bactrim double dose. Shortly after taking it, my body
started to shut down. As my breathing declined, the ability to walk was lost, I
felt I was speaking my last words and taking my last breaths. The ER sent me
home telling me to continue the medication saying it's "just
anxiety." If I listened I could have died, but instead I listened to my
body. I was soon after admitted by the doctor who prescribed it, but still told
it was just a reaction to the medication that would go away with time. After a
week in the hospital, I was then sent to a rehab hospital to learn how to walk
again. It never went away like they said, in fact it got worse.
Following
up with specialists as I was told to, my neurologist did seem to know what was
going on, two words I never heard before, so I kind of ignored them until the
test results would come in. July 11, 2012, the day I will never forget.
"You have Myasthenia Gravis... most people can live a fairly normal life
but you’ll have to take medication every day." Wait a minute, a
"fairly" normal life? Knock some more levels off that building I was
constructing. My body continued to negatively react to medications and initially
responded poorly to Mestinon. Unable to get in with the one MG specialist in
town, I was at a stand still. Then after a weekend in the hot, Texas sun in
October, I landed in the hospital again. This time they gave me IVIG and
Prednisone. I could not tolerate the side effects from Prednisone and begged
them every day to stop it; eventually I was weaned off. IVIG caused side
effects as well, and didn't seem to help. Again, I was promised I would improve
over time. After 6 weeks combined in a hospital and rehab hospital, I was
barely any better.
That is
when I decided I should probably get this thymectomy they talk of. Since
Chicago has more healthcare options and my parents could take care of me
through recovery, I opted to return to Chicago in January of this year. I again
faced the questioning of if it is "just anxiety". Eventually, I went
in for plasmapheresis in March of this year, which seemed to help, and days
later in April had a robotic thymectomy. Once again I had high hopes, but
another level of the building came down. My breathing was at it's worst and I
insisted something was wrong but told it was just the effects of surgery. After
being sent home, I returned to the ER to hear what I feared "You have a
pulmonary embolism." With multiple clots in both lungs, I thought my life
was over for a third time now.
Right
now I am finishing up treatment for my PE, and in the process I have been
diagnosed with something else called POTS- Postural Orthostatic Tachycardia
Syndrome. It is a type of dysautonomia which affects just about everything-
heart rate, blood pressure, digestion, respiratory, temperature, so on and so
forth. So now I have one illness that affects the voluntary parts of my body
and one that also affects involuntary. Many medications for POTS are on the “be
cautious with” list for MG. My treatment is pretty much at a standstill as my
body has become extremely sensitive to everything I put in it. I use a wheel
chair for anything more than a short walk and there are days I feel like a
prisoner in my own body. I have lost friends and even family members in the
mist of all of this. More levels removed from the building.
With all
that loss, it brings me down to the very bottom if my life were a building. By
everything I just said, you would think I'm a very negative person and there is
nowhere to go from here. However, oddly enough, right before my MG diagnosis, I
came to know God, and with Him I have gained so much more than all of my losses
combined. He transformed me into a positive person, and taught me to value
every level of that building that could so easily and quickly be taken away.
Though I am physically weak, I am spiritually strong. The building I was
constructing no longer stands, but I know God is helping me build a new one
now, a much better, taller, stronger one. My life is nothing like it used to
be, but rather than thinking of myself as disabled, I like to think of myself
as enabled…
My wheel
chair is an extension of myself and I feel blessed to have it so I can get out
including attending MG support groups and MG walks even if I can’t physically
walk. When my legs don’t work, I use my arms and my eyes to connect with others
over Facebook support groups or to write. When my arms and eyes don’t work
either, I rest, listen to music and pray, waiting for inspiration for the next
thing to write. In January, I started a blog with the purpose of one place family
and friends could go to stay informed while I’m in and out of the hospital.
Astonishingly, my blog took off, now having over 11,000 views, and I also
started a second one. I’ve always had a passion for writing but never had the
time. In addition, I design t-shirts and other items to bring awareness and any
profit I’ve made I’ve donated to the MG community. Now I can do what I love
while bringing awareness to a very rare disease. My new goal is to make
Myasthenia Gravis a household name… so that one day none of us ever have to
hear “but you look fine” or “it’s just anxiety” being sent home with our lives
at risk as we struggle to breathe. At the same time, I do hope remission is in
my future… and I will never forget what my neurologist told me when she first
diagnosed me… “Miracles do happen.”
---
Friday, November 8, 2013
Relight the Spark
I'm passionate about writing, but lately I've lost that spark... the spark that ignites an idea into a story. Where did it go? Maybe the same place I did for a short while.
As you know if you've been reading along, I've been battling illness for 3.5 years now. First, the confusion, the brush off of anxiety, the scratch your head and make a face I have no idea what's going on with you so it must be in your head. Next, the circle of specialists, misdiagnosis after misdiagnosis, more medications than I can count which just made me worse. Then, the diagnosis, the relief of an answer, the plan of attack. On to, the surgery, the complication, another diagnosis and a stand still in treatment. Lastly, to where we are now, right where we began. What to do what to do? Nobody knows. Nothing works. So I'll take matters into my own hands, again.
Taking matters into my own hands has two arrows right here. I'll speak of one, for now, the one that relates to losing that spark.
I found out my insurance covers hypnosis. I've pondered trying this for a while. Nothing else has worked, why not try something really outside the box. Of course finding specialists in this are few and far between. Well, I found someone and I had my first appointment 2 weeks ago. I asked if she could please hypnotize me to be healthy. LOL I laughed at the thought but you know the mind-body connection really is something, so who knows. Now before you start thinking the wrong thing, do keep in mind both MG and POTS are real physical disabling conditions. You can't just positive think your way into being healthy. But she spoke of something about the cells in your body and how they change and such... past my understanding, but hey it's worth a try. And so try we did.
I didn't feel like I was hypnotized at the time. Not one bit. I felt like maybe I was drifting off to sleep with someone's voice in the background. Though she explained it's not like the "you are getting sleepy" hypnosis you picture with someone waving something in front of you. It's more of a mindful meditation. When we were driving home I noticed I was pausing in between talking. I gasped "oh my gosh maybe it did work! I remember her saying I would slow down my talking so I don't over-exert myself!" I'm a REALLY fast talker and then I have no breath left to talk at all. So I was like hmmm, ok...
This was right before going on that trip to visit my college. After that trip, about a week after being hypnotized, I looked back and thought "wow, I really did have a bit more energy/strength." Hmmm again...
But then something else happened.
I remembered being hypnotized she told me to think back to when I was healthy, when I had no health problems. Then she said some other things I can't remember I guess basically trying to get me to rewind to that state of being. Something like that.
Well, I think it worked... but I think it worked too well in the wrong way. Along with feeling like I had a bit more energy, just slightly closer to old me physically, old me came back in more ways than one.
When I say "old me" and "new me" I mean old me as in pre-June/July of last year and new me as in after that time onward. I say this because of the spiritual transformation which you may read more about on my other blog. "New me" is a much better person I think. New me is a Christian and striving to "walk the walk" and not just "talk the talk." New me knows God. Old me was healthy and energetic and not a bad person, but, I didn't know God.
So I thought, perhaps the hypnosis brought me back to old me but not in the way I wanted. Perhaps it brought me back mentally but barely physically. For a few days, I felt I completely lost my connection with God. It was a loss I've never felt before. I've spoken of so much that I've lost with people being the hardest loss. This was even greater. I felt the biggest part of me was gone.
I called out God where are you I need you, I can't do this alone! And then I realized, all this time... I've been asking God if He could please give me back my health, give me back the relationships lost, give me back this and that which has all come tumbling down atop me. But I wasn't doing as much as I should have been of "praising in the storm." I wasn't thanking Him for standing with me through the storm! I think He stepped aside for a few days to both remind me to value what I have, including Him, and more importantly to glorify Him in all good that I do because clearly He is my strength! Once I realized this, He returned! New me is back! Thank you God! He never actually left, He is always here with us, but I couldn't feel His presence for a couple days which seemed like eternity without Him! Well, along with His return came the worsening of my symptoms again. But it's ok.
I am going to see her again and try hypnosis again. I'm guessing it's not really a one time thing. But I'm going to tell her what happened and hope we can figure out a way to keep it from happening again. I still VERY much want to be healthy and more than that want not to lose relationships in my life. However, what this has made me realize is something I never thought about before... I'd rather be unhealthy and have God than healthy and without Him. Hopefully I don't have to choose one or the other, but what I will choose is making certain I keep Him first for I know He will bless me if I do.
in all your ways submit to him,
and he will make your paths straight. Proverbs 3:6
But seek first his kingdom and his righteousness, and all these things will be given to you as well. Matthew 6:33
Next time, I will speak of that other arrow... the other way I am taking matters into my own hands... and God's hands of course.
As you know if you've been reading along, I've been battling illness for 3.5 years now. First, the confusion, the brush off of anxiety, the scratch your head and make a face I have no idea what's going on with you so it must be in your head. Next, the circle of specialists, misdiagnosis after misdiagnosis, more medications than I can count which just made me worse. Then, the diagnosis, the relief of an answer, the plan of attack. On to, the surgery, the complication, another diagnosis and a stand still in treatment. Lastly, to where we are now, right where we began. What to do what to do? Nobody knows. Nothing works. So I'll take matters into my own hands, again.
Taking matters into my own hands has two arrows right here. I'll speak of one, for now, the one that relates to losing that spark.
I found out my insurance covers hypnosis. I've pondered trying this for a while. Nothing else has worked, why not try something really outside the box. Of course finding specialists in this are few and far between. Well, I found someone and I had my first appointment 2 weeks ago. I asked if she could please hypnotize me to be healthy. LOL I laughed at the thought but you know the mind-body connection really is something, so who knows. Now before you start thinking the wrong thing, do keep in mind both MG and POTS are real physical disabling conditions. You can't just positive think your way into being healthy. But she spoke of something about the cells in your body and how they change and such... past my understanding, but hey it's worth a try. And so try we did.
I didn't feel like I was hypnotized at the time. Not one bit. I felt like maybe I was drifting off to sleep with someone's voice in the background. Though she explained it's not like the "you are getting sleepy" hypnosis you picture with someone waving something in front of you. It's more of a mindful meditation. When we were driving home I noticed I was pausing in between talking. I gasped "oh my gosh maybe it did work! I remember her saying I would slow down my talking so I don't over-exert myself!" I'm a REALLY fast talker and then I have no breath left to talk at all. So I was like hmmm, ok...
This was right before going on that trip to visit my college. After that trip, about a week after being hypnotized, I looked back and thought "wow, I really did have a bit more energy/strength." Hmmm again...
But then something else happened.
I remembered being hypnotized she told me to think back to when I was healthy, when I had no health problems. Then she said some other things I can't remember I guess basically trying to get me to rewind to that state of being. Something like that.
Well, I think it worked... but I think it worked too well in the wrong way. Along with feeling like I had a bit more energy, just slightly closer to old me physically, old me came back in more ways than one.
When I say "old me" and "new me" I mean old me as in pre-June/July of last year and new me as in after that time onward. I say this because of the spiritual transformation which you may read more about on my other blog. "New me" is a much better person I think. New me is a Christian and striving to "walk the walk" and not just "talk the talk." New me knows God. Old me was healthy and energetic and not a bad person, but, I didn't know God.
So I thought, perhaps the hypnosis brought me back to old me but not in the way I wanted. Perhaps it brought me back mentally but barely physically. For a few days, I felt I completely lost my connection with God. It was a loss I've never felt before. I've spoken of so much that I've lost with people being the hardest loss. This was even greater. I felt the biggest part of me was gone.
I called out God where are you I need you, I can't do this alone! And then I realized, all this time... I've been asking God if He could please give me back my health, give me back the relationships lost, give me back this and that which has all come tumbling down atop me. But I wasn't doing as much as I should have been of "praising in the storm." I wasn't thanking Him for standing with me through the storm! I think He stepped aside for a few days to both remind me to value what I have, including Him, and more importantly to glorify Him in all good that I do because clearly He is my strength! Once I realized this, He returned! New me is back! Thank you God! He never actually left, He is always here with us, but I couldn't feel His presence for a couple days which seemed like eternity without Him! Well, along with His return came the worsening of my symptoms again. But it's ok.
I am going to see her again and try hypnosis again. I'm guessing it's not really a one time thing. But I'm going to tell her what happened and hope we can figure out a way to keep it from happening again. I still VERY much want to be healthy and more than that want not to lose relationships in my life. However, what this has made me realize is something I never thought about before... I'd rather be unhealthy and have God than healthy and without Him. Hopefully I don't have to choose one or the other, but what I will choose is making certain I keep Him first for I know He will bless me if I do.
in all your ways submit to him,
and he will make your paths straight. Proverbs 3:6
But seek first his kingdom and his righteousness, and all these things will be given to you as well. Matthew 6:33
Next time, I will speak of that other arrow... the other way I am taking matters into my own hands... and God's hands of course.
Sunday, November 3, 2013
Month of Thanksgiving
It's November... it's the month of thanksgiving. Let's this month not only be thankful for what we have, but let's give the best we have. Which brings me to this.
Mother Teresa's Anyway Poem:
Mother Teresa's Anyway Poem:
People are often unreasonable, illogical and self centered;
Forgive them anyway.
If you are kind, people may accuse you of selfish, ulterior motives;
Be kind anyway.
If you are successful, you will win some false friends and some true enemies;
Succeed anyway.
If you are honest and frank, people may cheat you;
Be honest and frank anyway.
What you spend years building, someone could destroy overnight;
Build anyway.
If you find serenity and happiness, they may be jealous;
Be happy anyway.
The good you do today, people will often forget tomorrow;
Do good anyway.
Give the world the best you have, and it may never be enough;
Give the world the best you've got anyway.
You see, in the final analysis, it is between you and your God;
It was never between you and them anyway.
Forgive them anyway.
Be kind anyway.
Succeed anyway.
Be honest and frank anyway.
Build anyway.
Be happy anyway.
Do good anyway.
Give the world the best you've got anyway.
It was never between you and them anyway.
Friday, November 1, 2013
Cabin Fever!
Wow, it's been so long since I last wrote! So sorry for that! I've been busy and then tired and then busy and then tired... but hey, aren't we all? I am so not in writing mode right now so if this is a little off, sorry again.
Guess what I did the past couple days? I got out!! LOL And not just out, but away! Just because I can't do much doesn't mean I don't want to.
I've been concerned about any longer trips as the whole blood clot risk as well as I can't stay in any one position for a long period of time, especially if not laying down. But I talked with my doctors, and I had the whole back seat to put my legs up (which helps tremendously!) and off we went!
First stop, to get my teeth cleaned lol. If anyone needs a good dentist in Peoria or Bloomington, let me know. My uncle and everyone in his office are awesome!!
Second stop, Avantis! Oh yes how I missed you cheap but delicious Italian food.
Third stop, the burg to rest for the night. It helped to have a few stops to break up what would be a longer trip. I went down to the pool thinking I could do some aquatic therapy on my own since I had to skip this week. Oh my goodness, warmest pool ever! I used to love that but now heat is bad for both MG and POTS so it was just a quick dip for me. Customer appreciation week at the hotel- chips, popcorn and CHOCOLATE! Score!
And then what I've been wanting to do for years... visiting my college! My dad was asked to do some sort of class thing so my mom and I went just for fun. The plan was to wheel chair around the whole campus to see all the new stuff they have done, but thank you to the rain that didn't happen. However, rain didn't stop us. Fortunately, every building we drove up to we found a parking spot right there in front! So I got to see the new academic building which (yay!) has an elevator! I learned just how not accessible my college really was... you never think about that when you are able bodied. Then stopped for a delicious sandwich that I have oh so missed. On to the bookstore to visit the lady we knew there and see what fun stuff they're selling.
Yikes, after all that I was burnt out. But, I had planned to see my favorite professors so we headed over early so I could get a little rest break. All 4 of my communication/PR professors came over to visit. It was so great catching up with them and sharing some pretty funny stories! At the same time my mom was visiting with one of her college friends, so after my professors had to leave for class I went and visited with her too. So nice to see her even if it was a short hello.
We then drove around campus about to leave but decided to knock on the house of my sorority that wasn't there when I was there so we got to see that, drive past the oh so memorable frat houses and football field, with one last stop at Shopko! LOL Hey I couldn't go to that town without stopping there. Thank God for wheel chairs.
And the next morning we headed out. Short but sweet visit... and I made it!! The most difficult/tiring thing was the packing and unpacking. My arms, shoulders, back and chest are burnt out... and what am I doing? Typing to continue using all those same muscles. Smart ay? haha I promise after this I'll rest up. I have all weekend until the craziness of appointments starts again.
I thought going back would make me wish I were living in that town or back in college... but it didn't really. Now I feel it's a great place to visit, but I don't think I could live there. What it did make me miss is being healthy. It made me realize how very much I have cabin fever! I want to get out, travel, explore, be active again! I want to just do whatever comes my way and go wherever life takes me! But, I am limited within the confinement of this thing called an unhealthy body. I still have hope. I still look forward to the day when I can wake up, bounce out of bed and go for a run. Who knows, that day COULD be tomorrow!
After this visit I thought of how to describe my illness again since my "looking fine" is very deceiving. So it's like this, imagine a battery that isn't fully charged. It doesn't last as long if you don't charge it all the way right? So imagine that I'm that battery always running on like 1/4 a charge. I like to say I can do almost anything, just like a battery can, but I just don't last long before needing to be charged up again aka rest. That's why I look just like anyone else but I quickly run out of energy before everyone else.
With that said, I'm feeling very nomadic... lot's of cabin fever! So, Lord, please grant me better health so I can get out and about more. I promise to do Your will, whatever it is, but I want to spread it further than through written word. Let me spread the love through action. Let me travel and visit and experience and live. Amen!
Guess what I did the past couple days? I got out!! LOL And not just out, but away! Just because I can't do much doesn't mean I don't want to.
I've been concerned about any longer trips as the whole blood clot risk as well as I can't stay in any one position for a long period of time, especially if not laying down. But I talked with my doctors, and I had the whole back seat to put my legs up (which helps tremendously!) and off we went!
First stop, to get my teeth cleaned lol. If anyone needs a good dentist in Peoria or Bloomington, let me know. My uncle and everyone in his office are awesome!!
Second stop, Avantis! Oh yes how I missed you cheap but delicious Italian food.
Third stop, the burg to rest for the night. It helped to have a few stops to break up what would be a longer trip. I went down to the pool thinking I could do some aquatic therapy on my own since I had to skip this week. Oh my goodness, warmest pool ever! I used to love that but now heat is bad for both MG and POTS so it was just a quick dip for me. Customer appreciation week at the hotel- chips, popcorn and CHOCOLATE! Score!
And then what I've been wanting to do for years... visiting my college! My dad was asked to do some sort of class thing so my mom and I went just for fun. The plan was to wheel chair around the whole campus to see all the new stuff they have done, but thank you to the rain that didn't happen. However, rain didn't stop us. Fortunately, every building we drove up to we found a parking spot right there in front! So I got to see the new academic building which (yay!) has an elevator! I learned just how not accessible my college really was... you never think about that when you are able bodied. Then stopped for a delicious sandwich that I have oh so missed. On to the bookstore to visit the lady we knew there and see what fun stuff they're selling.
Yikes, after all that I was burnt out. But, I had planned to see my favorite professors so we headed over early so I could get a little rest break. All 4 of my communication/PR professors came over to visit. It was so great catching up with them and sharing some pretty funny stories! At the same time my mom was visiting with one of her college friends, so after my professors had to leave for class I went and visited with her too. So nice to see her even if it was a short hello.
We then drove around campus about to leave but decided to knock on the house of my sorority that wasn't there when I was there so we got to see that, drive past the oh so memorable frat houses and football field, with one last stop at Shopko! LOL Hey I couldn't go to that town without stopping there. Thank God for wheel chairs.
And the next morning we headed out. Short but sweet visit... and I made it!! The most difficult/tiring thing was the packing and unpacking. My arms, shoulders, back and chest are burnt out... and what am I doing? Typing to continue using all those same muscles. Smart ay? haha I promise after this I'll rest up. I have all weekend until the craziness of appointments starts again.
I thought going back would make me wish I were living in that town or back in college... but it didn't really. Now I feel it's a great place to visit, but I don't think I could live there. What it did make me miss is being healthy. It made me realize how very much I have cabin fever! I want to get out, travel, explore, be active again! I want to just do whatever comes my way and go wherever life takes me! But, I am limited within the confinement of this thing called an unhealthy body. I still have hope. I still look forward to the day when I can wake up, bounce out of bed and go for a run. Who knows, that day COULD be tomorrow!
After this visit I thought of how to describe my illness again since my "looking fine" is very deceiving. So it's like this, imagine a battery that isn't fully charged. It doesn't last as long if you don't charge it all the way right? So imagine that I'm that battery always running on like 1/4 a charge. I like to say I can do almost anything, just like a battery can, but I just don't last long before needing to be charged up again aka rest. That's why I look just like anyone else but I quickly run out of energy before everyone else.
With that said, I'm feeling very nomadic... lot's of cabin fever! So, Lord, please grant me better health so I can get out and about more. I promise to do Your will, whatever it is, but I want to spread it further than through written word. Let me spread the love through action. Let me travel and visit and experience and live. Amen!
Friday, October 18, 2013
The Dilemma
A while back I posted how frustrated I was with that week's doctor visits. I didn't go into detail because I had something positive to talk about and didn't want to lower my mood with this. But I'll finally get to it now because it explains a lot in regards to the status of my health which is not good.
I have MG. I have POTS. I have mg AND pots.
Dr. Awesome turned into Dr. not so awesome anymore.
The end.
Just kidding. But that really does pretty much sum it up.
I saw my pulmonologist on Monday of that week. It was an extremely frustrating visit... not because of my doctor and certainly not because of the respiratory therapist, not even because of the receptionists. Why? Because of the resident or fellow or whoever he was assisting my doctor that day. Sometimes I get really good residents who really know their stuff and seem extremely interested in knowing more. This one was horrible. He was horrible because he made me feel horrible. He acted as if he knew it all. ALL. When he clearly didn't know a thing about MG or POTS. He asked me all of the questions I've been asked a billion times before but in a very condescending I am right you are wrong type of way. He pretty much argued me on everything I said when all I was doing was answering his questions truthfully. When I talked about my ox sat dropping after being upright for a while and walking he told me to stand up and immediately tested it and then proceeded to tell me it was normal. Um, duh! I said after standing or walking FOR A WHILE. He then said something along the lines of he doesn't know why I'm here and that they really can't do anything for me! Excuse me?! I'm here because my pulmonologist who happens to be head of that department told me to come for testing and a follow up visit, who told me my breathing is being compromised by MG, who told me I need to be monitored. I then got short in my replies to him and said "Am I going to get to see my doctor?" He said yes and that he would "fill him in". Excuse me but I'm pretty sure my doctor knows much more of what's going on with me than you do. Unbelievable. I hope I never see that resident again. It's people like that who should not be in this field. I left there that day feeling horrible, bashed and attacked.
Thank God it turned around a bit when my pulmonologist came in. Yes he did know what was going on with me, he does see a reason for my being there, and he treated me with respect. My pulmonary function tests were repeated and everything was about the same... good and bad. Nothing got much worse, but since the last time which was in May, nothing got better... including the tests that correlate with MG which were in the 20th and 30th percentile. BAD!! Last time I met with him, the thought was I would be put on immune suppressants so by the time I came back they would have kicked in and my MG and thus breathing would therefore have improved. But I haven't been put on immune suppressants so that didn't happen. What he wants to do is put me in respiratory therapy/pulmonary rehab... but not until my MG is controlled because if you work out my diaphragm without my MG controlled that's the same as exercising my muscles- it makes me worse, and in the area of my lungs it risks moving towards crisis. He understands this. I understand this.
Who doesn't understand this? Dr. Awesome aka Dr. not so awesome anymore. I had that visit that Friday of that same week. I'm annoyed because I was sent to him for the purpose of POTS. I am VERY thankful he put it all together and diagnosed me with that so I at least have an answer to what is going on. But I'm annoyed because when he did that I asked him if I should keep my appointment with dr so and so, the MG specialist. His reply "No. I treat that too. I can treat you for both." So I canceled that appointment with dr so and so, the MG specialist, whos wait time is many months out. Bad move. As soon as I did that Dr. not so awesome anymore kind of changed his views on everything. He more and more insists I'm not affected by MG. Are you kidding me??? If there is anything I've learned in the past 3.5 years of illness, it is I have learned my body! I have also done an extreme amount of research. Furthermore, after now talking with others, I've learned that others have been in this same situation with him! They have already been diagnosed with MG, they are told a treatment route, he diagnoses POTS and disregards and even removes their MG and MG treatment!
IF POTS is affecting me in a neuropathic way, it would be that the outter areas of my body would be more affected- hands, feet, etc. I absolutely do not match that. My muscle weakness is strongly focused towards the center of my body- back, abdomen, chest, upper arms, neck and upper legs. My swallowing, chewing, smiling, talking and vision have also been getting worse- all MG symptoms. My hands and feet, as I've been told many times before- which would be POTS related, are incredibly strong. Furthermore, I've been tested positive for MG 3 times by blood test and 2 times by EMG/nerve study. I have NEVER tested negative. Furthermore again I have had severe reactions to the meds on the "be cautious with" list for MG. Furthermore AGAIN I responded positively to plasmapheresis and mestinon in the sense of increased muscle use/strength. It's just unbelievable really that I have to go through this all over again... the doubt of doctors. I should not have to go through this again and again and again and again. I HAVE MG. And every doctor who has ever thought I didn't eventually came to the conclusion that I in fact do. I'm starting to think they do this either 1. to try to keep you sick and coming back or 2. to repeat unnecessary tests to make money or 3. because they really are clueless as ever about MG. Do I need to find ANOTHER neurologist? This is insane.
And so right now my pulmonologist and neurologist are butting heads and I'm siding with my pulmonologist- it's MG in regards to my breathing and muscle weakness, not POTS. I have POTS but POTS is not causing my breathing problems and muscle weakness. POTS is causing my dizziness, lightheadedness, nausea, trouble digesting, tempurature regulation, high/low heart rate, high/low blood pressure... everything but that which is MG.
So right now, I'm in essence, not being treated... at the worst possible time to not be treated due to other stressful happenings in my life. This is why I'm not only not improving but have next to no chance of improving at the moment. People who improve are people who are properly treated with medication and/or plasmapheresis etc. Mestinon sends more signals from nerve to muscle so to try to allow my muscle to work better/longer but it does not treat the disease. (It would be like taking a pain killer for a broken bone- it might help the pain but it's not treating the broken bone.) So it's as if I'm living with MG without seeing a doctor when I've seen more than I can count. So no, it's not that we're trying to figure out the right meds. It's not that meds aren't working. It's not that we're "waiting" for something to kick in. It's that the doctor is not properly treating my MG! This is not good because although those who don't truly understand MG may disagree, it's been shown that MG IS progressive. And I've felt it. Clearly since I went from still being able to exercise/play sports in the beginning, to occasionally do that, to not do that but do housework, to rarely do housework, to rest basically all day because my body won't do anything. It's progressive and if it progresses any further I may as well be in a nursing home. It's dangerous that I'm not being treated. And my POTS isn't being treated either since we tried 2 things, both failed, and I guess he therefore gave up.
And thus, after that week, I felt so defeated. I felt back in the middle of the circle of doctors who can't figure it out, when it's already been figured out. Stop trying to diagnose that which has already been diagnosed.... many many times! Yes doctors it's a rare disease and it sucks that I have it, but I DO, so treat me for it!!
I'm ready to just up and move, again, just to find new doctors who will believe me, again. I almost feel like this is a lost cause. Jailed within my own body and no one will let me out. At least I have the Spirit of God within me so I'm never alone. This is how I get through each and every day...
http://www.youtube.com/watch?v=ndrj9Su0Azk Please listen to this. Hold on to the only one who can get you through.
Thanks for reading and allowing me to vent on this without judging me for "being negative." I'm a positive person who has negative moments. We all do. Let it be and let it out, and praise God through it all! Prayers for this and the other situation are much appreciated! Restoration on all accounts! Thank you!
I have MG. I have POTS. I have mg AND pots.
Dr. Awesome turned into Dr. not so awesome anymore.
The end.
Just kidding. But that really does pretty much sum it up.
I saw my pulmonologist on Monday of that week. It was an extremely frustrating visit... not because of my doctor and certainly not because of the respiratory therapist, not even because of the receptionists. Why? Because of the resident or fellow or whoever he was assisting my doctor that day. Sometimes I get really good residents who really know their stuff and seem extremely interested in knowing more. This one was horrible. He was horrible because he made me feel horrible. He acted as if he knew it all. ALL. When he clearly didn't know a thing about MG or POTS. He asked me all of the questions I've been asked a billion times before but in a very condescending I am right you are wrong type of way. He pretty much argued me on everything I said when all I was doing was answering his questions truthfully. When I talked about my ox sat dropping after being upright for a while and walking he told me to stand up and immediately tested it and then proceeded to tell me it was normal. Um, duh! I said after standing or walking FOR A WHILE. He then said something along the lines of he doesn't know why I'm here and that they really can't do anything for me! Excuse me?! I'm here because my pulmonologist who happens to be head of that department told me to come for testing and a follow up visit, who told me my breathing is being compromised by MG, who told me I need to be monitored. I then got short in my replies to him and said "Am I going to get to see my doctor?" He said yes and that he would "fill him in". Excuse me but I'm pretty sure my doctor knows much more of what's going on with me than you do. Unbelievable. I hope I never see that resident again. It's people like that who should not be in this field. I left there that day feeling horrible, bashed and attacked.
Thank God it turned around a bit when my pulmonologist came in. Yes he did know what was going on with me, he does see a reason for my being there, and he treated me with respect. My pulmonary function tests were repeated and everything was about the same... good and bad. Nothing got much worse, but since the last time which was in May, nothing got better... including the tests that correlate with MG which were in the 20th and 30th percentile. BAD!! Last time I met with him, the thought was I would be put on immune suppressants so by the time I came back they would have kicked in and my MG and thus breathing would therefore have improved. But I haven't been put on immune suppressants so that didn't happen. What he wants to do is put me in respiratory therapy/pulmonary rehab... but not until my MG is controlled because if you work out my diaphragm without my MG controlled that's the same as exercising my muscles- it makes me worse, and in the area of my lungs it risks moving towards crisis. He understands this. I understand this.
Who doesn't understand this? Dr. Awesome aka Dr. not so awesome anymore. I had that visit that Friday of that same week. I'm annoyed because I was sent to him for the purpose of POTS. I am VERY thankful he put it all together and diagnosed me with that so I at least have an answer to what is going on. But I'm annoyed because when he did that I asked him if I should keep my appointment with dr so and so, the MG specialist. His reply "No. I treat that too. I can treat you for both." So I canceled that appointment with dr so and so, the MG specialist, whos wait time is many months out. Bad move. As soon as I did that Dr. not so awesome anymore kind of changed his views on everything. He more and more insists I'm not affected by MG. Are you kidding me??? If there is anything I've learned in the past 3.5 years of illness, it is I have learned my body! I have also done an extreme amount of research. Furthermore, after now talking with others, I've learned that others have been in this same situation with him! They have already been diagnosed with MG, they are told a treatment route, he diagnoses POTS and disregards and even removes their MG and MG treatment!
IF POTS is affecting me in a neuropathic way, it would be that the outter areas of my body would be more affected- hands, feet, etc. I absolutely do not match that. My muscle weakness is strongly focused towards the center of my body- back, abdomen, chest, upper arms, neck and upper legs. My swallowing, chewing, smiling, talking and vision have also been getting worse- all MG symptoms. My hands and feet, as I've been told many times before- which would be POTS related, are incredibly strong. Furthermore, I've been tested positive for MG 3 times by blood test and 2 times by EMG/nerve study. I have NEVER tested negative. Furthermore again I have had severe reactions to the meds on the "be cautious with" list for MG. Furthermore AGAIN I responded positively to plasmapheresis and mestinon in the sense of increased muscle use/strength. It's just unbelievable really that I have to go through this all over again... the doubt of doctors. I should not have to go through this again and again and again and again. I HAVE MG. And every doctor who has ever thought I didn't eventually came to the conclusion that I in fact do. I'm starting to think they do this either 1. to try to keep you sick and coming back or 2. to repeat unnecessary tests to make money or 3. because they really are clueless as ever about MG. Do I need to find ANOTHER neurologist? This is insane.
And so right now my pulmonologist and neurologist are butting heads and I'm siding with my pulmonologist- it's MG in regards to my breathing and muscle weakness, not POTS. I have POTS but POTS is not causing my breathing problems and muscle weakness. POTS is causing my dizziness, lightheadedness, nausea, trouble digesting, tempurature regulation, high/low heart rate, high/low blood pressure... everything but that which is MG.
So right now, I'm in essence, not being treated... at the worst possible time to not be treated due to other stressful happenings in my life. This is why I'm not only not improving but have next to no chance of improving at the moment. People who improve are people who are properly treated with medication and/or plasmapheresis etc. Mestinon sends more signals from nerve to muscle so to try to allow my muscle to work better/longer but it does not treat the disease. (It would be like taking a pain killer for a broken bone- it might help the pain but it's not treating the broken bone.) So it's as if I'm living with MG without seeing a doctor when I've seen more than I can count. So no, it's not that we're trying to figure out the right meds. It's not that meds aren't working. It's not that we're "waiting" for something to kick in. It's that the doctor is not properly treating my MG! This is not good because although those who don't truly understand MG may disagree, it's been shown that MG IS progressive. And I've felt it. Clearly since I went from still being able to exercise/play sports in the beginning, to occasionally do that, to not do that but do housework, to rarely do housework, to rest basically all day because my body won't do anything. It's progressive and if it progresses any further I may as well be in a nursing home. It's dangerous that I'm not being treated. And my POTS isn't being treated either since we tried 2 things, both failed, and I guess he therefore gave up.
And thus, after that week, I felt so defeated. I felt back in the middle of the circle of doctors who can't figure it out, when it's already been figured out. Stop trying to diagnose that which has already been diagnosed.... many many times! Yes doctors it's a rare disease and it sucks that I have it, but I DO, so treat me for it!!
I'm ready to just up and move, again, just to find new doctors who will believe me, again. I almost feel like this is a lost cause. Jailed within my own body and no one will let me out. At least I have the Spirit of God within me so I'm never alone. This is how I get through each and every day...
http://www.youtube.com/watch?v=ndrj9Su0Azk Please listen to this. Hold on to the only one who can get you through.
Thanks for reading and allowing me to vent on this without judging me for "being negative." I'm a positive person who has negative moments. We all do. Let it be and let it out, and praise God through it all! Prayers for this and the other situation are much appreciated! Restoration on all accounts! Thank you!
Wednesday, October 16, 2013
Good News
So, this week I decided at the end of every day I will pull out at least one positive about that day. End result- it's a good week no matter what happens. I decided today to post that positive here since it is somewhat of an update.
Just some background for anyone just starting to read... I had my thymectomy for Myasthenia Gravis in April. It resulted in the complication of a pulmonary embolism. Thus, I've been on warfarin (blood thinner treatment). I was originally told 6 months, which brings us to right about now.
Today I met with my hematologist to discuss the possibility of coming off the warfarin. We were weighing the options- stay on, stop but start heparin shots (they are major ouch!) or stop. My neurologist wants me off so he can do testing he can't do while I'm on warfarin, and he thinks it could be affecting my progress in some regard. My pulmonologist wants me to stay on until my MG is controlled to where I can physically be more active. I see both sides, but what I wanted was to be able to come off and start taking flax seed.
Now, flax seed is not used as treatment, but it does make you more prone to bleeding. Actually in the past I needed my knee cauterized after cutting it because the bleeding would not stop on its own. Ouch again. Anyways, I take flax seed for inflammation/pain because advil hurts my stomach and pain killers can make MG worse plus my sensitivity to meds. I haven't been able to take it while on warfarin, so any pain, other than when I was monitored in the hospital, has gone without anything to relieve it. So I wanted to be able to stop the warfarin to be able to take flax seed and also that flax seed may somewhat help thin the blood slightly, maybe. I also wanted to be able to take my digestive enzymes again because it helps me eat more normally and I couldn't take those while on warfarin. Lastly, of course not having to monitor my blood and be cautious that I don't grab a grapefruit or cranberry juice (both which I was very used to doing) would be nice to not be concerned about anymore.
My d-dimer came back... low!! That means my risk for having clots right now is low. Based on this and a negative scan in between starting treatment and now, she is letting me come off soon!! I will be taking it through the end of the month and then I get to stop. Then 4-6 weeks later I have to go in for some more tests. If all is clear I can stay off!! The only thing is on any long car ride or plane ride or whenever I'm in the hospital or sick on bedrest I need to do heparin or loveanox shots. And I am also in agreement with her that in order for this to happen I need to get up and move around at least once an hour. That will be the difficult part when I'm having an incredibly bad day but I will do it if it means getting off warfarin! So yay!
That is my good news and maybe doesn't sound too exciting but get this... I survived a pulmonary embolism- bilateral multiple clot pulmonary embolism!! Praise God!
That's really all I have to say for now because I'm overly tired. Too many appointments and too much stress. I will ask you all for prayer on something close to my heart today. If you know what it is please pray for it. And if you don't, I still appreciate prayers for my health. Lord, make me whole again- healthy, happy and serving You!
And I'll leave you all with this. "Praise You in this storm" by Casting Crowns. Look it up and listen if you want. Never give up and never give up hope.
Just some background for anyone just starting to read... I had my thymectomy for Myasthenia Gravis in April. It resulted in the complication of a pulmonary embolism. Thus, I've been on warfarin (blood thinner treatment). I was originally told 6 months, which brings us to right about now.
Today I met with my hematologist to discuss the possibility of coming off the warfarin. We were weighing the options- stay on, stop but start heparin shots (they are major ouch!) or stop. My neurologist wants me off so he can do testing he can't do while I'm on warfarin, and he thinks it could be affecting my progress in some regard. My pulmonologist wants me to stay on until my MG is controlled to where I can physically be more active. I see both sides, but what I wanted was to be able to come off and start taking flax seed.
Now, flax seed is not used as treatment, but it does make you more prone to bleeding. Actually in the past I needed my knee cauterized after cutting it because the bleeding would not stop on its own. Ouch again. Anyways, I take flax seed for inflammation/pain because advil hurts my stomach and pain killers can make MG worse plus my sensitivity to meds. I haven't been able to take it while on warfarin, so any pain, other than when I was monitored in the hospital, has gone without anything to relieve it. So I wanted to be able to stop the warfarin to be able to take flax seed and also that flax seed may somewhat help thin the blood slightly, maybe. I also wanted to be able to take my digestive enzymes again because it helps me eat more normally and I couldn't take those while on warfarin. Lastly, of course not having to monitor my blood and be cautious that I don't grab a grapefruit or cranberry juice (both which I was very used to doing) would be nice to not be concerned about anymore.
My d-dimer came back... low!! That means my risk for having clots right now is low. Based on this and a negative scan in between starting treatment and now, she is letting me come off soon!! I will be taking it through the end of the month and then I get to stop. Then 4-6 weeks later I have to go in for some more tests. If all is clear I can stay off!! The only thing is on any long car ride or plane ride or whenever I'm in the hospital or sick on bedrest I need to do heparin or loveanox shots. And I am also in agreement with her that in order for this to happen I need to get up and move around at least once an hour. That will be the difficult part when I'm having an incredibly bad day but I will do it if it means getting off warfarin! So yay!
That is my good news and maybe doesn't sound too exciting but get this... I survived a pulmonary embolism- bilateral multiple clot pulmonary embolism!! Praise God!
That's really all I have to say for now because I'm overly tired. Too many appointments and too much stress. I will ask you all for prayer on something close to my heart today. If you know what it is please pray for it. And if you don't, I still appreciate prayers for my health. Lord, make me whole again- healthy, happy and serving You!
And I'll leave you all with this. "Praise You in this storm" by Casting Crowns. Look it up and listen if you want. Never give up and never give up hope.
Monday, October 14, 2013
That's a wrap
I originally started this blog to keep my friends and family informed on how I was doing. It's difficult to email or call so many people and repeat the same thing over and over. This was my go to point. I also thought it would be great at making my family and friends aware of what MG is because it is so rare. Thank God, I haven't been back in the hospital since I was discharged from my pulmonary embolism the end of April, so my "progress" hasn't really changed. Thus this blog has become more of a space to talk about different things that happen in the life of someone with MG, and now also with POTS.
I never imagined my blog would turn into what it has. Nearly 11,000 views. I am beyond amazed. I am so thankful for all of you who read my blog and share my blog. My last post has over 400 views on it alone. Things like that are a breakthrough in spreading awareness. That is what us MGers need, awareness. So thank you so much for reading. Please keep spreading the word. Make Myasthenia Gravis a household name... so when we "look fine" we aren't judged as actually being fine, so when we land in the ER in crisis we aren't sent home being told our ox sat is normal (it can be normal while our life is on the line), so that our family and friends know how they can help and that we still need them in our lives and appreciate them staying in our lives, so that we can get more funding to find a CURE! Again, thank you.
I did just a little updating and need to do more to create a page about POTS now too. For now I added a subscribe by email button. It's to the right of where you are reading this right now. I know since doing so some have told me they subscribed. However, I also know many started reading just recently. So I wanted to take a moment to re-post some of my top blog posts. Anyone who hasn't read them or just wants to read them again, here you go (from oldest to newest so they make sense when reading)...
Thankful We have much to be thankful for.
Just a thought Explaining why we with MG do what we do... or don't do.
Great Article The spoon theory.
Goodbye Thymus To anyone facing thymectomy, speaks of my experience right after. Remember everyone is different.
Pulmonary Embolism The risk became real.
Unclutter your home Unclutter your mind Because I'm a neat freak... and because it helps.
Listen to your body It could save your life.
Random Optimism Just for fun.
Adaptation Good for family and friends to read to learn the changes we HAVE to make in our lives.
Truth Sometimes the best place to find it is from the patient.
Appreciate You can always find the good within the bad.
Part 1 These next 3 are about my POTS diagnosis and linking to more information about it.
Part 2
Part 3
Did that just happen? Some people DO get those horrible side effects we are warned of.
Fun Just because we are chronically sick doesn't mean we can't have fun.
Suffocating from the inside out The most recent and most popular post speaking of MG crisis/warning signs.
Also, on the top of any page you can click on the links to my story, learn more about MG, q&a and what you can do to help. There is a lot of information and I hope to continue to bring you more.
Lastly, if anyone wants items to bring awareness- shirts, mugs, bags, even items for pets!- please visit www.cafepress.com/fightmg for Myasthenia Gravis items and www.cafepress.com/DysautonomiaAwareness for POTS/Dysautonomia items.
I am so blessed to be able to make the most of my illness through doing what I love, writing, as well as designing items, both to promote awareness. You all have made this possible by being committed to encouraging and supporting me, and of course by reading my posts, donating to the cause and purchasing my items. I truly appreciate each and every one of you in my life. Above all else, all the glory goes to God. He has transformed me in a way I used to think was not possible. I can do ALL things through Christ who strengthens me. Philippians 4:13 It's true.
Thank you! God bless.
I never imagined my blog would turn into what it has. Nearly 11,000 views. I am beyond amazed. I am so thankful for all of you who read my blog and share my blog. My last post has over 400 views on it alone. Things like that are a breakthrough in spreading awareness. That is what us MGers need, awareness. So thank you so much for reading. Please keep spreading the word. Make Myasthenia Gravis a household name... so when we "look fine" we aren't judged as actually being fine, so when we land in the ER in crisis we aren't sent home being told our ox sat is normal (it can be normal while our life is on the line), so that our family and friends know how they can help and that we still need them in our lives and appreciate them staying in our lives, so that we can get more funding to find a CURE! Again, thank you.
I did just a little updating and need to do more to create a page about POTS now too. For now I added a subscribe by email button. It's to the right of where you are reading this right now. I know since doing so some have told me they subscribed. However, I also know many started reading just recently. So I wanted to take a moment to re-post some of my top blog posts. Anyone who hasn't read them or just wants to read them again, here you go (from oldest to newest so they make sense when reading)...
Thankful We have much to be thankful for.
Just a thought Explaining why we with MG do what we do... or don't do.
Great Article The spoon theory.
Goodbye Thymus To anyone facing thymectomy, speaks of my experience right after. Remember everyone is different.
Pulmonary Embolism The risk became real.
Unclutter your home Unclutter your mind Because I'm a neat freak... and because it helps.
Listen to your body It could save your life.
Random Optimism Just for fun.
Adaptation Good for family and friends to read to learn the changes we HAVE to make in our lives.
Truth Sometimes the best place to find it is from the patient.
Appreciate You can always find the good within the bad.
Part 1 These next 3 are about my POTS diagnosis and linking to more information about it.
Part 2
Part 3
Did that just happen? Some people DO get those horrible side effects we are warned of.
Fun Just because we are chronically sick doesn't mean we can't have fun.
Suffocating from the inside out The most recent and most popular post speaking of MG crisis/warning signs.
Also, on the top of any page you can click on the links to my story, learn more about MG, q&a and what you can do to help. There is a lot of information and I hope to continue to bring you more.
Lastly, if anyone wants items to bring awareness- shirts, mugs, bags, even items for pets!- please visit www.cafepress.com/fightmg for Myasthenia Gravis items and www.cafepress.com/DysautonomiaAwareness for POTS/Dysautonomia items.
I am so blessed to be able to make the most of my illness through doing what I love, writing, as well as designing items, both to promote awareness. You all have made this possible by being committed to encouraging and supporting me, and of course by reading my posts, donating to the cause and purchasing my items. I truly appreciate each and every one of you in my life. Above all else, all the glory goes to God. He has transformed me in a way I used to think was not possible. I can do ALL things through Christ who strengthens me. Philippians 4:13 It's true.
Thank you! God bless.
Wednesday, October 9, 2013
Suffocating from the inside out
First, just to clear up from that title, I am not nor was I suffocating. I'm ok.
Second, to get to what that title means.
Yesterday, I had a doctor's appointment at 12:00. I got there early as I usually do. I handed in my paperwork that I filled out at home (they knew I was filling it out at home) then I waited. At 12:15 the nurse took me in, so I was already waiting about a half hour but that's to be expected at the doctor. She briefly went over a few things, took my blood pressure, then in her words "I'll have the doctor come right in." RIGHT in. Well, "right in" meant an hour later, 1.5 hours later if you take into account my appointment was at 12 but he didn't come in til 1:30. No apology, explanation, nothing. I understand sometimes things happen, but here's the thing. When I was in the waiting room I heard the receptionist say something to my nurse about 1:30 and at that time the nurse took in a different patient before me even though I arrived first. My thought is they knew I wouldn't see the doctor til 1:30. Why on earth would you give me an appointment time of 12:00 then? And if something came up, why not make me aware??
So anyways, once the doctor finally came in he spent about an hour and a half with me. He was very thorough which was good. BUT I started fading out before he even got in the room and especially once we started talking. And then after my visit with him, the nurse came back in and went over some stuff with me. Total time in the office was 4 hours! To any healthy person, you'd be thinking geeze that's a long appointment or that's ridiculous or I won't go back there... something like that. But to me, it's different. I brought magazines, I can hang out and do nothing and be fine with it. What I'm not fine with is my body not being able to tolerate that. "Just sitting" wears out my muscles. "Just talking" wears out my muscles. "Just being alert" exhausts me.
So getting to the title of my post.... when you have MG and your back/abdomen/anything surrounding the diaphragm or the diaphragm muscles get tired... that is putting you at risk of MG crisis which is basically suffocating from the inside out. With MG the more you use a muscle the weaker it gets and less it works until it is pretty much paralyzed for the time being. That doesn't just happen with arms and legs. That happens with face, with swallowing, and with breathing. When you use your diaphragm muscles too much or too long, it gets weak and breathing becomes very labored. If it keeps up, your diaphragm will stop working, ie. you suffocate to death from the inside out. This is when ventilators are used and plasmapheresis comes in due to crisis. But sometimes they don't work and sometimes it's not soon enough. Sorry to be so blunt, but then again I'm not sorry because I'm just telling the truth and people need to know it. I still don't think people realize the seriousness of this disease.
So after the appointment yesterday and all day today I am laying down. I don't lay flat during the day because that makes it harder to breathe too. But I lay with my legs up and back resting on pillows. If my back is not fully supported (meaning not doing the work on its own), like yesterday in a chair at a doctor's office, it goes weak, quickly. Now I have no choice but to do nothing and lay here. I have a choice- I could do more- but I almost guarantee I'll be in the hospital if I do. I have aquatic therapy tomorrow and I hope I regain enough to be able to go.
This is one very big reason why many people with MG, especially MG that has not been controlled due to medication sensitivies/side effects, etc, cannot work. We look fine. We are fine... for a few minutes to maybe a couple hours. Then at any point in time from many different factors- talking, walking, standing, sitting, smiling, typing, reading, being stressed, heat, medication, or maybe nothing at all- our bodies take a turn for the worse very quickly and sometimes very severely. And "recovery time" can take days or longer. This is why we HAVE to take it easy and be pro-active rather than re-active in our disease. Being re-active could be what determines life vs. death.
When you're sitting at work complaining you want the day over with, when you're on a phone call for hours with something that won't get settled, when you're walking or running to exercise, when you're chewing your food without thinking twice about it, when you're driving, when you're doing anything... today I ask you be mindful of what it is you are doing and appreciate that moment. Appreciate and value that you CAN do those things. You have the ability to do it even if you don't want to. And doing those things for you isn't a matter of life or death. You are blessed. Remember that. You are blessed. And I am too, but I have to live my life a little differently.
Thanks for reading.
Second, to get to what that title means.
Yesterday, I had a doctor's appointment at 12:00. I got there early as I usually do. I handed in my paperwork that I filled out at home (they knew I was filling it out at home) then I waited. At 12:15 the nurse took me in, so I was already waiting about a half hour but that's to be expected at the doctor. She briefly went over a few things, took my blood pressure, then in her words "I'll have the doctor come right in." RIGHT in. Well, "right in" meant an hour later, 1.5 hours later if you take into account my appointment was at 12 but he didn't come in til 1:30. No apology, explanation, nothing. I understand sometimes things happen, but here's the thing. When I was in the waiting room I heard the receptionist say something to my nurse about 1:30 and at that time the nurse took in a different patient before me even though I arrived first. My thought is they knew I wouldn't see the doctor til 1:30. Why on earth would you give me an appointment time of 12:00 then? And if something came up, why not make me aware??
So anyways, once the doctor finally came in he spent about an hour and a half with me. He was very thorough which was good. BUT I started fading out before he even got in the room and especially once we started talking. And then after my visit with him, the nurse came back in and went over some stuff with me. Total time in the office was 4 hours! To any healthy person, you'd be thinking geeze that's a long appointment or that's ridiculous or I won't go back there... something like that. But to me, it's different. I brought magazines, I can hang out and do nothing and be fine with it. What I'm not fine with is my body not being able to tolerate that. "Just sitting" wears out my muscles. "Just talking" wears out my muscles. "Just being alert" exhausts me.
So getting to the title of my post.... when you have MG and your back/abdomen/anything surrounding the diaphragm or the diaphragm muscles get tired... that is putting you at risk of MG crisis which is basically suffocating from the inside out. With MG the more you use a muscle the weaker it gets and less it works until it is pretty much paralyzed for the time being. That doesn't just happen with arms and legs. That happens with face, with swallowing, and with breathing. When you use your diaphragm muscles too much or too long, it gets weak and breathing becomes very labored. If it keeps up, your diaphragm will stop working, ie. you suffocate to death from the inside out. This is when ventilators are used and plasmapheresis comes in due to crisis. But sometimes they don't work and sometimes it's not soon enough. Sorry to be so blunt, but then again I'm not sorry because I'm just telling the truth and people need to know it. I still don't think people realize the seriousness of this disease.
So after the appointment yesterday and all day today I am laying down. I don't lay flat during the day because that makes it harder to breathe too. But I lay with my legs up and back resting on pillows. If my back is not fully supported (meaning not doing the work on its own), like yesterday in a chair at a doctor's office, it goes weak, quickly. Now I have no choice but to do nothing and lay here. I have a choice- I could do more- but I almost guarantee I'll be in the hospital if I do. I have aquatic therapy tomorrow and I hope I regain enough to be able to go.
This is one very big reason why many people with MG, especially MG that has not been controlled due to medication sensitivies/side effects, etc, cannot work. We look fine. We are fine... for a few minutes to maybe a couple hours. Then at any point in time from many different factors- talking, walking, standing, sitting, smiling, typing, reading, being stressed, heat, medication, or maybe nothing at all- our bodies take a turn for the worse very quickly and sometimes very severely. And "recovery time" can take days or longer. This is why we HAVE to take it easy and be pro-active rather than re-active in our disease. Being re-active could be what determines life vs. death.
When you're sitting at work complaining you want the day over with, when you're on a phone call for hours with something that won't get settled, when you're walking or running to exercise, when you're chewing your food without thinking twice about it, when you're driving, when you're doing anything... today I ask you be mindful of what it is you are doing and appreciate that moment. Appreciate and value that you CAN do those things. You have the ability to do it even if you don't want to. And doing those things for you isn't a matter of life or death. You are blessed. Remember that. You are blessed. And I am too, but I have to live my life a little differently.
Thanks for reading.
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