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
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