When someone is diagnosed with a life altering illness, changes have to be made. Most of the changes are directly for that person, but many of them also affect others- family and friends of that person. I've had to make a lot of changes and adapt to a new way of living. I think many many people still don't realize the extent of this. Let me list for you just some of the many changes. They may sound like no big deal, but they are a huge deal. Because anything can set me into crisis, so I need to control my surroundings/setting as best as I can and it would be a huge help if others understood that and assisted me with that.
- Air conditioning- The heavier the air, the harder it is for me to breathe. The harder it is for me to breathe, the more my muscles are working. The more my muscles work, the faster and easier I will fatigue and risk going into crisis. Even if I'm not really warm, sometimes I need the air conditioning just to allow me to breathe easier. Even if there is a cool breeze from outside, if the air is humid it is still too hard for me to breathe. Even if YOU can breathe perfectly fine, I cannot. Please realize that and help adapt the environment for me.
- Stress- Like I said before there is good stress and bad stress but let's focus on the bad stress for a moment. I need to avoid it as much as humanly possible, and it is possible, but I need others help. Don't argue with me. A conversation/discussion, fine... but argument, well no one should do that to begin with but it's especially hard on me. Take this a step further, don't argue in front of me. Even if I'm not involved in it, I hear it and the raised voices alone drain me and stress me out. This is especially true about matters that do not and should not matter. People argue over everything. Everyone needs to take a chill pill.
- Everyday activities- opening a door, putting a dish in the sink, making a phone call, etc. etc. Everything that seems easy for you is not as easy for me. Some doors are really heavy, and even if they aren't, it's using up the small amount of strength that I do have. If you are with me and can open the door, please do, I will really appreciate it. I do feel bad still standing there having another open the door for me, and especially if I see elderly coming in after I've entered I want to turn around and hold the door for them, but I just can't do that. As much as I want to help like I used to with any household stuff or if I'm visiting someone else and want to assist them with dishes or whatnot, well I can't do that as much anymore, I shouldn't do it at all especially if I'm visiting with people because my energy needs to be reserved for that. Making a phone call- sounds so simple. It's not. Holding the phone to my ear tires out my arm quickly. So you say get a headset or use speakerphone. I have and have used both, but talking also tires me out. If you've ever been around me within the past year and you pay attention you will notice that if I'm having a conversation with you, at times I'll just need to stop talking and I'll sit there. I'll try to listen to everyone else but really what I'm trying to do is get some energy back. To summarize- if there is anything you can assist me with, I will greatly appreciate it. Trust me, I HATE not doing things myself and I hate asking for help, but it really does help.
- Spacing things out- This means multiple things. For one, each day in general. I try to avoid planning anything for the morning because taking a shower, getting dressed and having breakfast uses a LOT of my energy. I need a fairly long break before doing anything after that. And by break I mean basically laying in bed watching tv or checking email or doing what I'm doing now. "Break" doesn't mean doing things around the house and only refraining from going out. Then when I do go out- whether it be to a doctor appointment, visit a friend, lunch, etc. that needs to be spaced out as well. My days do have to be fairly planned for the most part- at least in regards to how long an "activity" will last and how much energy it will use. I can't be surprised with extra trips here or there. I need to do what my day had planned and that's about it, because I know if I do more the rest break won't be long enough to give me enough energy in time for my next "activity." Now what this also means is my days, if someone is planning things out that I am involved in, I cannot do things more than 2-3 days in a row, at very very most 3 days in a row, but safer at 1 or 2. Let me expand on this in a new paragraph...
Lately, I've been feeling a little bad I haven't seen many people at all since being out of the hospital, even before going into the hospital my visits with people were few and far between. I really do want to see you all, but it's very difficult to do this. The biggest reason right now is because all of June is currently booked. What this means is that in order to have those breaks in between the days I have to go somewhere, every single day is currently used up. If I have any more unforeseen doctor appointments or testing, I'm going to try to schedule it in July or my body is going to do more than it should. Hopefully these appointments slow down in July or August and then I can try to plan to get together with more people. But as of now, June is not at all an option unfortunately.
Let's summarize- if I have an activity coming up that will be fun (rare these days with all the doctors appointments) then I really really need to watch all of the above things and more very closely the days before to assure that I have enough energy to make it to that activity. That's the situation I'm in right now, trying to prepare my body for an activity planned over the weekend. But already I've declined with the air not being on for some time and struggling to get my breathing back to ok. My life is all about adapting, and I hope and pray others can help me do that by adapting as well. No it's not ideal, but it's what's happening.
That's about all I'm going to talk on that subject for now.
For a quick update- my INR (blood level for treating PE) was low 2 weeks in a row now! 1.5. I haven't been therapeutic for 2 weeks. Now they upped my dosage the highest it's been and it does scare me a little like what if there machine was broken and gave an incorrect reading and upping my dosage causes me to bleed internally. There goes the Stephen King side of me creating crazy situations lol. No I'm not as worried as I just made it sound, it's just concerning that my level is still so low. If it's low again at the next check after upping the dose a lot, I may ask about the glass of wine a day prescription. Not joking. There have been patients who have had doctors suggest they start having a glass of wine a day to help up their INR. Basically it's drink every day or don't drink at all to keep levels consistent. I chose don't drink at all... but if prescription calls... that wine in the fridge does look delicious.
Writer's block... mind just went blank so I guess I'll end it there. I have a good topic to write about next time...
Friday, May 31, 2013
Saturday, May 25, 2013
Good News Day
Yesterday was a day filled with good news, so I'm going to share it.
I had my pulmonologist appointment yesterday. My neurologist wanted the pulmonary function testing done again, now after the pulmonary embolism, to help determine how much of my breathing trouble is due to myasthenia and how much is due to pe. Once again I loved Rush hospital. Seriously, Rush, I'm a tough grader but you get an A in my book. Keep it up. Everyone was just so nice there. The testing lasted about an hour which was very difficult as its basically a work out for your lungs and chest muscles and apparently throat and head and neck and so on... who knew. haha Well I was exhausted by the end of it, but the respiratory therapists walked me through the whole thing, gave me breaks whenever needed, brought me water and even offered me juice! What hospital offers their patients juice during a regular doctor visit?? Ok CDH did that too, love them too. Well, the testing showed that as far as PE, it's not a huge problem in regards to my breathing right now. Unfortunately, the bad news was I scored 25% and 35% for the MG tests... really really really bad. But, that gives an answer! The answer is that my breathing trouble is most likely, almost definitely, due to the MG. Now that's not a good thing of course, but I'm trying to focus on the good things.
The pulmonologist does want to order a sleep study to see how I breathe over night and determine the need for a bipap machine- kinda breathes for you when your muscles have difficulty. He also ordered a diaphram/breathing ultrasound... didn't really know there was such a test. He said this will determine for sure if it's the myasthenia or if there is a chance something else is physically wrong such as during surgery they accidentally cut a nerve... yikes let's hope not I got enough of my fair share in complications. Those tests will be done next month with a follow up and the answers to everything the end of next month.
The better good news was upon returning home, after the hour ride in traffic back which I didn't even mind because Rush is that awesome... I had a message from my hematologist. After not hearing from her for a week after I thought I would, I prayed that she would call with good results. God heard, God answered! All my genetic blood tests are NORMAL!!! That made me so so so happy! Thank you God! This means that my pulmonary embolism was almost definitely not due to anything genetic for in which case I'd have to be on the blood thinners for life. The only other tests left for this are to determine if an underlining autoimmune disease could cause me to be more likely to develop clots in which case I'd also be on blood thinners for life. But we can't do that test til after I stop the blood thinners for this treatment course. So until then I'll put it out of my mind and hope for the best, that it was an isolated incident due to a complication of surgery.
Now that I type this it doesn't sound like as much good news as I made it out to be lol. I guess I was just THAT happy about it.
Lastly, the real Good News... well these past few days I've been hearing this voice (not literally) telling me to start another blog, a Christian blog. I questioned it of course and thought why would I do that when I already have a blog. Well I guess God really wanted me to start a Christian blog because the voice got louder and louder. So today, I listened, and I created a second blog. I really don't know what the plans for it are but if I've learned one thing it's that really all plans are best left up to God. So we'll see where the other blog takes me/you/us. If anyone is interested, the site is Strength by Faith I plan to post my spiritual journey there and my medical journey here. Though I am going to guess some posts will over lap in which case I will post them to both blogs.
So that's that. I'd like to end in saying my thoughts and prayers are with San Antonio right now. More than 9" of rain in 24 hours, tornado warnings, huge amount of flooding where people are rescued off roof tops and highways are shut down... it looks scary. Everyone in San Antonio, stay safe, and remember what SA news tells you "turn around, don't drown!" :) but better yet stay off the roads. I'm guessing the 2 year drought has ended and the 2 year flooding season has begun. Crazy SA! Miss y'all!
I had my pulmonologist appointment yesterday. My neurologist wanted the pulmonary function testing done again, now after the pulmonary embolism, to help determine how much of my breathing trouble is due to myasthenia and how much is due to pe. Once again I loved Rush hospital. Seriously, Rush, I'm a tough grader but you get an A in my book. Keep it up. Everyone was just so nice there. The testing lasted about an hour which was very difficult as its basically a work out for your lungs and chest muscles and apparently throat and head and neck and so on... who knew. haha Well I was exhausted by the end of it, but the respiratory therapists walked me through the whole thing, gave me breaks whenever needed, brought me water and even offered me juice! What hospital offers their patients juice during a regular doctor visit?? Ok CDH did that too, love them too. Well, the testing showed that as far as PE, it's not a huge problem in regards to my breathing right now. Unfortunately, the bad news was I scored 25% and 35% for the MG tests... really really really bad. But, that gives an answer! The answer is that my breathing trouble is most likely, almost definitely, due to the MG. Now that's not a good thing of course, but I'm trying to focus on the good things.
The pulmonologist does want to order a sleep study to see how I breathe over night and determine the need for a bipap machine- kinda breathes for you when your muscles have difficulty. He also ordered a diaphram/breathing ultrasound... didn't really know there was such a test. He said this will determine for sure if it's the myasthenia or if there is a chance something else is physically wrong such as during surgery they accidentally cut a nerve... yikes let's hope not I got enough of my fair share in complications. Those tests will be done next month with a follow up and the answers to everything the end of next month.
The better good news was upon returning home, after the hour ride in traffic back which I didn't even mind because Rush is that awesome... I had a message from my hematologist. After not hearing from her for a week after I thought I would, I prayed that she would call with good results. God heard, God answered! All my genetic blood tests are NORMAL!!! That made me so so so happy! Thank you God! This means that my pulmonary embolism was almost definitely not due to anything genetic for in which case I'd have to be on the blood thinners for life. The only other tests left for this are to determine if an underlining autoimmune disease could cause me to be more likely to develop clots in which case I'd also be on blood thinners for life. But we can't do that test til after I stop the blood thinners for this treatment course. So until then I'll put it out of my mind and hope for the best, that it was an isolated incident due to a complication of surgery.
Now that I type this it doesn't sound like as much good news as I made it out to be lol. I guess I was just THAT happy about it.
Lastly, the real Good News... well these past few days I've been hearing this voice (not literally) telling me to start another blog, a Christian blog. I questioned it of course and thought why would I do that when I already have a blog. Well I guess God really wanted me to start a Christian blog because the voice got louder and louder. So today, I listened, and I created a second blog. I really don't know what the plans for it are but if I've learned one thing it's that really all plans are best left up to God. So we'll see where the other blog takes me/you/us. If anyone is interested, the site is Strength by Faith I plan to post my spiritual journey there and my medical journey here. Though I am going to guess some posts will over lap in which case I will post them to both blogs.
So that's that. I'd like to end in saying my thoughts and prayers are with San Antonio right now. More than 9" of rain in 24 hours, tornado warnings, huge amount of flooding where people are rescued off roof tops and highways are shut down... it looks scary. Everyone in San Antonio, stay safe, and remember what SA news tells you "turn around, don't drown!" :) but better yet stay off the roads. I'm guessing the 2 year drought has ended and the 2 year flooding season has begun. Crazy SA! Miss y'all!
Thursday, May 23, 2013
Short Update
Hi all. Just a short update (or so I say, we'll see how that turns out once I start typing). I haven't posted an update in a while, just writing about what's on my mind.
First the biggest concern currently of course is the pulmonary embolism (PE) so I'll talk on that to begin. My INR was within range for a little while. Well last week it was 3.9! Yikes! Therapeutic is within 2-3 but my dr wants me 2-2.5. The higher it gets the more likely you are to bleed with the biggest concern being internal bleeding you can't see including in your brain. Scary. So they adjusted my dose, again. This week it was 1.5! Uggh! That's too low. Anything too low means you really aren't safe in regards to the clot. So my dose is adjusted again with another check next week. I actually wish they would check me more frequently since my INR is all over the place lately. It doesn't make me feel very safe, but at the same time I'm trying not to worry much and leave it up to God.
Second of recent concern has been my heart. The EKG was abnormal so there was definite talk of a heart problem. Well my 24 hour holter monitor results and echocardiogram results were both normal! Thank God the echo was normal, I would hope nothing could be "seen" wrong with my heart. But the 24 hour holter- I didn't experience any palpitations or irregular beats in those 24 hours! So I was guessing that one would be normal too. Of course, isn't that how it always works out. The next day my heart went NUTS. So they didn't catch it, which is both good and bad. I'll be seeing a cardiologist in a few weeks and should know more after that. It would be wonderful if there was nothing seriously wrong, but at the same time if there is something wrong I really hope they can catch it and provide some answers.
Third, my myasthenia gravis (MG). Well over the weekend I got pretty exhausted. I try to plan things out so I have no more than 2 days of "doing things" in a row... doing things means anything from doctor appointments to a trip to the store. Well I had a doctor appointment Friday, visiting with my family Saturday, the MG group Sunday... Sunday should have been my rest day but I really wanted to go to the group, it only happens once every 3 months and its where I get to connect with others who can relate. I was feeling it on Sunday. Monday morning I was supposed to go to breakfast with my family. I knew it wasn't a good idea for me from the moment I woke up but I really wanted to see my aunt and uncle again... so I got ready, didn't even shower that morning in order to conserve my energy... but I was wiped just doing that. Still I was sitting in the kitchen trying to tell myself I can do this even though I knew I shouldn't. I didn't want to back out. But I decided to make the smart move rather than the preferred move and I listened to my body and stayed back while everyone else went. My body definitely needed that rest. It sounds like no big deal going to breakfast, but I was having huge sensory overload issues that morning and thus every little sight, sound, movement drained the energy from me. The worst thing I could do is push it and land back in the ER because I go into crisis. So I took a few days to rest and I'm feeling about my "new normal" now which is do a little something, rest, do a little something rest, and wheel chair anything that isn't a short walk.
I'm still waiting on my blood test results from the hematologist. They tested to see if I have any genetic blood clotting disorders, in which I'd most likely be on blood thinners all my life. Well the doctor said it should take about a week and she will call with results. Well she didn't so at about 10 days I emailed her, today 2 days later still no response so I followed up with a call and left a voice message, no call back. I'm getting a little annoyed. I liked her, I liked the hospital, but I don't understand why they won't tell me my results or even respond to me. Why did she give me her business card if she isn't going to take emails or phone calls? I just hope she responds at some point.
Tomorrow I have a pulmonologist appointment at that same hospital. I plan to ask him if he's able to print off the results for me... maybe that will work. My neurologist wanted me to go back to the pulmonologist to do all the breathing tests again to determine how much of my breathing trouble/shortness of breath is due to MG or due to PE. She also would like me to get a bipap machine- its a machine that helps you breathe overnight- it's like cpap. But my levels were literally right above the cut off point for insurance to cover it. That was on a "good" day though so perhaps now I would be under that cutoff line. We shall see. I'm just excited about eating at that little cafe' place inside the hospital afterwards ha ha!
Well I'm tired so I'm going to end it there. I have plenty of topics on my mind to write about but hopefully I'll remember them and share them on another day. Until then, enjoy the holiday weekend.
ps. I think this is about the most boring post I've written thus far. I think the exhaustion has reached my brain. :)
First the biggest concern currently of course is the pulmonary embolism (PE) so I'll talk on that to begin. My INR was within range for a little while. Well last week it was 3.9! Yikes! Therapeutic is within 2-3 but my dr wants me 2-2.5. The higher it gets the more likely you are to bleed with the biggest concern being internal bleeding you can't see including in your brain. Scary. So they adjusted my dose, again. This week it was 1.5! Uggh! That's too low. Anything too low means you really aren't safe in regards to the clot. So my dose is adjusted again with another check next week. I actually wish they would check me more frequently since my INR is all over the place lately. It doesn't make me feel very safe, but at the same time I'm trying not to worry much and leave it up to God.
Second of recent concern has been my heart. The EKG was abnormal so there was definite talk of a heart problem. Well my 24 hour holter monitor results and echocardiogram results were both normal! Thank God the echo was normal, I would hope nothing could be "seen" wrong with my heart. But the 24 hour holter- I didn't experience any palpitations or irregular beats in those 24 hours! So I was guessing that one would be normal too. Of course, isn't that how it always works out. The next day my heart went NUTS. So they didn't catch it, which is both good and bad. I'll be seeing a cardiologist in a few weeks and should know more after that. It would be wonderful if there was nothing seriously wrong, but at the same time if there is something wrong I really hope they can catch it and provide some answers.
Third, my myasthenia gravis (MG). Well over the weekend I got pretty exhausted. I try to plan things out so I have no more than 2 days of "doing things" in a row... doing things means anything from doctor appointments to a trip to the store. Well I had a doctor appointment Friday, visiting with my family Saturday, the MG group Sunday... Sunday should have been my rest day but I really wanted to go to the group, it only happens once every 3 months and its where I get to connect with others who can relate. I was feeling it on Sunday. Monday morning I was supposed to go to breakfast with my family. I knew it wasn't a good idea for me from the moment I woke up but I really wanted to see my aunt and uncle again... so I got ready, didn't even shower that morning in order to conserve my energy... but I was wiped just doing that. Still I was sitting in the kitchen trying to tell myself I can do this even though I knew I shouldn't. I didn't want to back out. But I decided to make the smart move rather than the preferred move and I listened to my body and stayed back while everyone else went. My body definitely needed that rest. It sounds like no big deal going to breakfast, but I was having huge sensory overload issues that morning and thus every little sight, sound, movement drained the energy from me. The worst thing I could do is push it and land back in the ER because I go into crisis. So I took a few days to rest and I'm feeling about my "new normal" now which is do a little something, rest, do a little something rest, and wheel chair anything that isn't a short walk.
I'm still waiting on my blood test results from the hematologist. They tested to see if I have any genetic blood clotting disorders, in which I'd most likely be on blood thinners all my life. Well the doctor said it should take about a week and she will call with results. Well she didn't so at about 10 days I emailed her, today 2 days later still no response so I followed up with a call and left a voice message, no call back. I'm getting a little annoyed. I liked her, I liked the hospital, but I don't understand why they won't tell me my results or even respond to me. Why did she give me her business card if she isn't going to take emails or phone calls? I just hope she responds at some point.
Tomorrow I have a pulmonologist appointment at that same hospital. I plan to ask him if he's able to print off the results for me... maybe that will work. My neurologist wanted me to go back to the pulmonologist to do all the breathing tests again to determine how much of my breathing trouble/shortness of breath is due to MG or due to PE. She also would like me to get a bipap machine- its a machine that helps you breathe overnight- it's like cpap. But my levels were literally right above the cut off point for insurance to cover it. That was on a "good" day though so perhaps now I would be under that cutoff line. We shall see. I'm just excited about eating at that little cafe' place inside the hospital afterwards ha ha!
Well I'm tired so I'm going to end it there. I have plenty of topics on my mind to write about but hopefully I'll remember them and share them on another day. Until then, enjoy the holiday weekend.
ps. I think this is about the most boring post I've written thus far. I think the exhaustion has reached my brain. :)
Sunday, May 19, 2013
Random Optimism
Who likes fortune cookies? I do. Though I don't quite believe in that, they are fun. Who wants an idea for a homemade fortune cookie like experience? Yes, experience. Isn't everything an experience? If you said yes, today's your lucky day. I just so happened to think up such an experience. Haha.
So, you're flipping through magazines, the newspaper... wait a minute, hold up, does anyone even do that anymore besides me? If not, perhaps you should stop reading right here. Oops, forgot the world is so technologically advanced and well I'm an 80 year old living in a 29 year old's body. Well, I suppose you could do this the same by printing from something you find on your high tech gadgets. Anyways... your flipping through your magazines or "flipping through" your ipad thing... you come across a saying, a quote, a message, a picture that pulls you in. You read it, you like it, perhaps you're even inspired by it. Or again, is this just me who this happens to? Hopefully someone else reading this encounters this too, or well I guess I'm just writing as a reminder to myself today. Gosh, I keep going off on a tangent here. Back to my story. I started cutting those little things out (this is where you high tech people would press the print button). What I was doing with them was gluing them (does anyone here even use glue anymore??) to a paper to keep with other stuff in my binder (wow you're really starting to see how anti-technology I am here... though I am typing on a laptop instead of hand writing in a journal so go me! haha).
Ok I need to get to the point. The other day I was cutting these things out and placing them in a ziplock bag until I would later glue them to the paper in my binder. But then I thought I never really look at that paper in my binder so what's the point of that. And then I went to go eat a fortune cookie. And the thought hit me! Homemade fortune cookie-like experience. Haha. Instead of gluing them onto a paper I rarely look at, I could keep them in this bag. And then when I want a "fortune" or I should say a random boost of optimism because well I don't cut anything out that is negative of course- then I can pull one out of the bag like drawing a name out of a hat. I read it, I'm inspired, my day is now better... or so that's the hope behind it. And then, after doing that I can either glue it to that paper, or tape it somewhere I can see, or I can secretly hide it for someone else to inspire them... like in a drawer or a pocket or something. Random act of kindness, kinda-sorta.
Now since I blabbed away, I'll quickly summarize. When you see a quote or such that inspires you, cut it out or print it. Toss it in a bag or envelope. When you are down, when you need a lift, or when you desire a fortune cookie but there are none in sight- reach in and grab one. Now, feel happiness. Tape or glue this somewhere or hide it for someone else. Carry on with your day. Let's do one right now for the fun of it- this is for all of you- drum roll.... and it says "Everything is going to work out!" Well, yay for you! Now there is no need for you to worry about anything because my fortune cookie like experience says so!
So, you're flipping through magazines, the newspaper... wait a minute, hold up, does anyone even do that anymore besides me? If not, perhaps you should stop reading right here. Oops, forgot the world is so technologically advanced and well I'm an 80 year old living in a 29 year old's body. Well, I suppose you could do this the same by printing from something you find on your high tech gadgets. Anyways... your flipping through your magazines or "flipping through" your ipad thing... you come across a saying, a quote, a message, a picture that pulls you in. You read it, you like it, perhaps you're even inspired by it. Or again, is this just me who this happens to? Hopefully someone else reading this encounters this too, or well I guess I'm just writing as a reminder to myself today. Gosh, I keep going off on a tangent here. Back to my story. I started cutting those little things out (this is where you high tech people would press the print button). What I was doing with them was gluing them (does anyone here even use glue anymore??) to a paper to keep with other stuff in my binder (wow you're really starting to see how anti-technology I am here... though I am typing on a laptop instead of hand writing in a journal so go me! haha).
Ok I need to get to the point. The other day I was cutting these things out and placing them in a ziplock bag until I would later glue them to the paper in my binder. But then I thought I never really look at that paper in my binder so what's the point of that. And then I went to go eat a fortune cookie. And the thought hit me! Homemade fortune cookie-like experience. Haha. Instead of gluing them onto a paper I rarely look at, I could keep them in this bag. And then when I want a "fortune" or I should say a random boost of optimism because well I don't cut anything out that is negative of course- then I can pull one out of the bag like drawing a name out of a hat. I read it, I'm inspired, my day is now better... or so that's the hope behind it. And then, after doing that I can either glue it to that paper, or tape it somewhere I can see, or I can secretly hide it for someone else to inspire them... like in a drawer or a pocket or something. Random act of kindness, kinda-sorta.
Now since I blabbed away, I'll quickly summarize. When you see a quote or such that inspires you, cut it out or print it. Toss it in a bag or envelope. When you are down, when you need a lift, or when you desire a fortune cookie but there are none in sight- reach in and grab one. Now, feel happiness. Tape or glue this somewhere or hide it for someone else. Carry on with your day. Let's do one right now for the fun of it- this is for all of you- drum roll.... and it says "Everything is going to work out!" Well, yay for you! Now there is no need for you to worry about anything because my fortune cookie like experience says so!
Thursday, May 16, 2013
Listen to your body
This would be written tomorrow but since I'll be busy tomorrow and not busy now, it's written now.
A month ago I was sitting in the ER crying in fear of my life upon diagnosis of PE. Today I am 1 month out in surviving a PE! If I had not listened to my own body, I probably wouldn't be typing this right now. I kept telling them there was something wrong, I kept requesting imaging but they wouldn't listen to me. Upon returning to the ER 1.5 days after being discharged home, I said there was no way I was leaving until they did that imaging. It's become more real to me now in understanding 1 in 3 don't survive it. It's become more real after talking with others who have PE or know someone who has and didn't make it. For once I was not part of that smaller percentage. God must have a purpose for me here on earth.
Thus I want to advise to all- listen to your body. Doctors are educated and of course have their very important place in this world, but- they don't know your body best. YOU do.
This is the most serious time, but not the only time this has happened. I went undiagnosed of MG for over 2 years. If I had not listened to my body, I would probably be on tons of anxiety medication and either nothing else or way too much else. I can't even count the number of times I was written off to having "just anxiety". And I can't even count the number of incorrect medications I was given from antibiotics to steroids to inhalers to acid reflux meds and more... I stopped counting after about 50, no joke. But at the same time I kept pushing for that answer. This is especially true for an "invisible illness" such as mine where they make the assumption that it's all in your head. It's not, your insides exist even if they can't be seen. Keep pushing for that answer.
Another time this happened, there's a chance I may not have made it either if I had not listened to my own body. Last February when I was prescribed a medication and started showing almost all of the listed serious side effects shortly after. I went to the ER because of trouble breathing, trouble walking and much more. That ER disregarded my symptoms, told me it was anxiety and sent me home! Sent me home and told me to continue that medication! They completely ignored my symptoms were listed as serious side effects. Well I went home and tried to tell myself they were right, but I knew they weren't. The next day when I continued to decline to the point of not knowing if I would make it- I called the prescribing doctor who told me to go straight to clinical admitting at his hospital. Thank God he was on call at that time. He immediately stopped the meds and said it was a serious side effect. Little did any of us know at the time it was because of Myasthenia Gravis and I was going into crisis. There is a long list of meds that can cause MG crisis and this was one of them. Another pill, another day I may have ended up on the ventilator as many MG patients do. But I listened to my body. I knew something was off.
Currently, I'm still listening to my body and not giving up. I still have a number of symptoms that don't fall under any diagnosis. I pushed on the heart issue thing for about 3 years now and finally starting to get it figured out. I will keep pushing and advocating for myself regardless of what anyone tells me. If my gut doesn't say that's correct, I won't accept it. At least my strong willed personality pays off in one area of life here.
Any doctor can tell you what's in the books. Any friend or family member can try to encourage you that you're "fine." Listen to your body anyways. And if you're a doctor, a friend or a family member of anyone who has a chronic illness, an invisible illness, or is experiencing symptoms you can't see or don't believe- think twice about it. Listen to them. Listen to them before it's too late and you won't be able to listen to them ever again.
I listened. I survived. <3
A month ago I was sitting in the ER crying in fear of my life upon diagnosis of PE. Today I am 1 month out in surviving a PE! If I had not listened to my own body, I probably wouldn't be typing this right now. I kept telling them there was something wrong, I kept requesting imaging but they wouldn't listen to me. Upon returning to the ER 1.5 days after being discharged home, I said there was no way I was leaving until they did that imaging. It's become more real to me now in understanding 1 in 3 don't survive it. It's become more real after talking with others who have PE or know someone who has and didn't make it. For once I was not part of that smaller percentage. God must have a purpose for me here on earth.
Thus I want to advise to all- listen to your body. Doctors are educated and of course have their very important place in this world, but- they don't know your body best. YOU do.
This is the most serious time, but not the only time this has happened. I went undiagnosed of MG for over 2 years. If I had not listened to my body, I would probably be on tons of anxiety medication and either nothing else or way too much else. I can't even count the number of times I was written off to having "just anxiety". And I can't even count the number of incorrect medications I was given from antibiotics to steroids to inhalers to acid reflux meds and more... I stopped counting after about 50, no joke. But at the same time I kept pushing for that answer. This is especially true for an "invisible illness" such as mine where they make the assumption that it's all in your head. It's not, your insides exist even if they can't be seen. Keep pushing for that answer.
Another time this happened, there's a chance I may not have made it either if I had not listened to my own body. Last February when I was prescribed a medication and started showing almost all of the listed serious side effects shortly after. I went to the ER because of trouble breathing, trouble walking and much more. That ER disregarded my symptoms, told me it was anxiety and sent me home! Sent me home and told me to continue that medication! They completely ignored my symptoms were listed as serious side effects. Well I went home and tried to tell myself they were right, but I knew they weren't. The next day when I continued to decline to the point of not knowing if I would make it- I called the prescribing doctor who told me to go straight to clinical admitting at his hospital. Thank God he was on call at that time. He immediately stopped the meds and said it was a serious side effect. Little did any of us know at the time it was because of Myasthenia Gravis and I was going into crisis. There is a long list of meds that can cause MG crisis and this was one of them. Another pill, another day I may have ended up on the ventilator as many MG patients do. But I listened to my body. I knew something was off.
Currently, I'm still listening to my body and not giving up. I still have a number of symptoms that don't fall under any diagnosis. I pushed on the heart issue thing for about 3 years now and finally starting to get it figured out. I will keep pushing and advocating for myself regardless of what anyone tells me. If my gut doesn't say that's correct, I won't accept it. At least my strong willed personality pays off in one area of life here.
Any doctor can tell you what's in the books. Any friend or family member can try to encourage you that you're "fine." Listen to your body anyways. And if you're a doctor, a friend or a family member of anyone who has a chronic illness, an invisible illness, or is experiencing symptoms you can't see or don't believe- think twice about it. Listen to them. Listen to them before it's too late and you won't be able to listen to them ever again.
I listened. I survived. <3
Wednesday, May 15, 2013
Unclutter your home, Unclutter your mind
People with MG know that conservation of energy is extremely important. Energy is used up by everything- not just what you would typically think of like walking or doing laundry. Energy is used by every stresser. Stress is both good and bad. So to me this means- every sight, every sound, every action, every thought. Everything has the ability to produce or cause stress. We MGers often hear from both doctors and family/friends, reduce your stress. Well, thank you for that amazing advice, but it's not as simple as a cake walk (which I love by the way). Sometimes I feel every one of these senses shooting at me all at once. It's not something I can just turn off or ignore.
However, here is one way I feel stress can be reduced. This is one thing we can do in which we can feel control over our environment and our stressers. Unclutter your home and in return you will unclutter your mind. The less sensory stimulation coming in, the less energy used and the more energy is conserved for doing what you need to do... that's how I feel about it, worth a try at least.
See, over the past almost year now, I've felt a stronger connection to Christ and in return a lesser connection to material things, so that ties into it too. If we seek first a relationship with Jesus, He will then provide for us all that we need or desire. All of these things not only clutter our minds and our homes but clutter our hearts, they shift our focus onto things- literally things- that don't and shouldn't matter instead of on our relationships- with ourselves, with others and with God. I'm not saying just go through your home and throw out everything (though sometimes I think that would be quite a nice cleanse). But do you really need everything you have? Do you even know everything you own? If you haven't used it in a year or don't even know you had it, you probably don't need it. Why not start a box- or several- of items you really don't need and bring it over to a donation center to people who really might need these things or would at least benefit from them more than we are. Donate, sell, give to a friend/family.
Piece by piece our living space will open up. It will be like a weight lifted off your shoulder. Then again don't quote me on that- I'm a ridiculously organized neat freak so that weight may be heavier on mine than yours. Anyways, what have you got to lose by trying? Those items that you didn't even know you had? Come on now. Yes the physical cleaning will be taxing on an MGer so take your time or ask for help... it's as simple as if you are in an area of your home and come across some items you don't need, toss them in that box.
As your home becomes uncluttered, your mind will become uncluttered. That sensory overload feeling will decrease- whether or not you consciously experience that feeling like I do. Your mind, and more importantly your heart will be able to focus on what really matters most. And at that point I think your heart will have a better understanding of what that "matters most" really is, not be pulled into a false reality of worldly things. The stressers will be lessened. Energy conservation will come more naturally.
Unclutter your home, Unclutter your mind.
Unclutter your heart.
However, here is one way I feel stress can be reduced. This is one thing we can do in which we can feel control over our environment and our stressers. Unclutter your home and in return you will unclutter your mind. The less sensory stimulation coming in, the less energy used and the more energy is conserved for doing what you need to do... that's how I feel about it, worth a try at least.
See, over the past almost year now, I've felt a stronger connection to Christ and in return a lesser connection to material things, so that ties into it too. If we seek first a relationship with Jesus, He will then provide for us all that we need or desire. All of these things not only clutter our minds and our homes but clutter our hearts, they shift our focus onto things- literally things- that don't and shouldn't matter instead of on our relationships- with ourselves, with others and with God. I'm not saying just go through your home and throw out everything (though sometimes I think that would be quite a nice cleanse). But do you really need everything you have? Do you even know everything you own? If you haven't used it in a year or don't even know you had it, you probably don't need it. Why not start a box- or several- of items you really don't need and bring it over to a donation center to people who really might need these things or would at least benefit from them more than we are. Donate, sell, give to a friend/family.
Piece by piece our living space will open up. It will be like a weight lifted off your shoulder. Then again don't quote me on that- I'm a ridiculously organized neat freak so that weight may be heavier on mine than yours. Anyways, what have you got to lose by trying? Those items that you didn't even know you had? Come on now. Yes the physical cleaning will be taxing on an MGer so take your time or ask for help... it's as simple as if you are in an area of your home and come across some items you don't need, toss them in that box.
As your home becomes uncluttered, your mind will become uncluttered. That sensory overload feeling will decrease- whether or not you consciously experience that feeling like I do. Your mind, and more importantly your heart will be able to focus on what really matters most. And at that point I think your heart will have a better understanding of what that "matters most" really is, not be pulled into a false reality of worldly things. The stressers will be lessened. Energy conservation will come more naturally.
Unclutter your home, Unclutter your mind.
Unclutter your heart.
Sunday, May 12, 2013
Happy Mother's Day and more
Happy Mother's Day to all the moms out there... but especially to mine. Her and my dad raised me well. They taught me as much as they possibly could. They were active, not passive, in their parenting. The best thing anyone could teach someone is how to do it yourself... you know the verse "Give a man a fish and you feed him for a day. Teach a man to fish and you feed him for a lifetime." They taught me to fish. Unfortunately my MG and other things had other plans and thus I have another huge thing to be thankful for- them taking me back into their home as an adult child who knows how to fish but can't do it alone all the time.
Now for an update-
My INR has stayed within range and my next check is the beginning of this week. I'm still waiting on my 24 hour holter monitor heart results and then my echocardiogram is this week also so I should know all of my heart tests and an idea of what's going on sometime next week.
I had my followup with my surgeon this past week... kind of pointless I think. I could have sent him a photo of my scars and it would have taken a lot less time and expense. So glad to be done with that place. I won't miss it one bit.
As for my MG, nothing really different. I was feeling much stronger after the plasmapheresis and a little after surgery. But as soon as the pulmonary embolism hit, bam, back to how I was. But it's to be expected not to see any improvement. As a reminder it will take months to years to see improvement IF the surgery did bring any on for me.
I also had an appointment with a hematologist at Rush. I can't say enough good things about that hospital! Awesome! They were so organized, efficient, nice, clean... the food at the cafe' we stopped at was awesome. Too bad the hospital isn't a lot closer. Anyways, she ran all the blood work to see if my blood clots could be related to a genetic problem. God, I hope all is normal/negative, because otherwise I have to be on blood thinners for life. Then in about 5.5 months she wants a repeat CT chest scan to see if my clots are gone. If so and if my genetic tests are normal I can stop the blood thinners. About 2 weeks after that then she will run blood work to see if my blood clots could be related to an autoimmune disease. That can't be tested while on the blood thinners because the results get altered by it. If everything is negative, please please please be negative, then I will be done with blood thinners and can carry on.
Lastly-
I think I figured out how people can now post comments to my blog. There was a problem with it before, but it should be fixed. Someone go ahead and try it out. Hopefully it works. If not, no big deal- I get everyones emails, messages and such they just aren't posted for everyone to see. And I know people are still reading since I'm almost at 5000 views!!! So exciting! I would love if everyone could share at least the "about MG" page to get awareness out there.
Don't forget I opened a "shop" to sell MG items for awareness. I will make a percentage off of what is sold and if I start selling I plan to determine a percentage of my percentage to donate to the MG foundation. Please visit my shop site at CafePress
Thanks as always!
Now for an update-
My INR has stayed within range and my next check is the beginning of this week. I'm still waiting on my 24 hour holter monitor heart results and then my echocardiogram is this week also so I should know all of my heart tests and an idea of what's going on sometime next week.
I had my followup with my surgeon this past week... kind of pointless I think. I could have sent him a photo of my scars and it would have taken a lot less time and expense. So glad to be done with that place. I won't miss it one bit.
As for my MG, nothing really different. I was feeling much stronger after the plasmapheresis and a little after surgery. But as soon as the pulmonary embolism hit, bam, back to how I was. But it's to be expected not to see any improvement. As a reminder it will take months to years to see improvement IF the surgery did bring any on for me.
I also had an appointment with a hematologist at Rush. I can't say enough good things about that hospital! Awesome! They were so organized, efficient, nice, clean... the food at the cafe' we stopped at was awesome. Too bad the hospital isn't a lot closer. Anyways, she ran all the blood work to see if my blood clots could be related to a genetic problem. God, I hope all is normal/negative, because otherwise I have to be on blood thinners for life. Then in about 5.5 months she wants a repeat CT chest scan to see if my clots are gone. If so and if my genetic tests are normal I can stop the blood thinners. About 2 weeks after that then she will run blood work to see if my blood clots could be related to an autoimmune disease. That can't be tested while on the blood thinners because the results get altered by it. If everything is negative, please please please be negative, then I will be done with blood thinners and can carry on.
Lastly-
I think I figured out how people can now post comments to my blog. There was a problem with it before, but it should be fixed. Someone go ahead and try it out. Hopefully it works. If not, no big deal- I get everyones emails, messages and such they just aren't posted for everyone to see. And I know people are still reading since I'm almost at 5000 views!!! So exciting! I would love if everyone could share at least the "about MG" page to get awareness out there.
Don't forget I opened a "shop" to sell MG items for awareness. I will make a percentage off of what is sold and if I start selling I plan to determine a percentage of my percentage to donate to the MG foundation. Please visit my shop site at CafePress
Thanks as always!
Saturday, May 11, 2013
MG Items for Sale!
After my MG diagnosis, I was looking all over to find items to promote awareness of this rare disease. There were a few things out there, but nothing to my liking. So I took matters into my own hands.
Over the past week I've been creating a "store" online. The designs are basic but to the point- promoting awareness. The home page shows the designs and after clicking on one you will find many items to choose from- shirts to baby items to coffee cups to calendars and more! If anyone has a specific look in mind but can't find it, please let me know and I'd be happy to create it if I can. I may, over time, create more complex designs. (Please note for some reason the top bar listing specific types of items "clothing" "drinkware" etc. isn't working properly so please don't refer to that.)
I will make a percentage off each sale, so anyone who buys is directly helping me, an MG patient. Thank you for browsing, thank you for purchasing and thank you for promoting awareness of Myasthenia Gravis!
http://www.cafepress.com/fightmg
Over the past week I've been creating a "store" online. The designs are basic but to the point- promoting awareness. The home page shows the designs and after clicking on one you will find many items to choose from- shirts to baby items to coffee cups to calendars and more! If anyone has a specific look in mind but can't find it, please let me know and I'd be happy to create it if I can. I may, over time, create more complex designs. (Please note for some reason the top bar listing specific types of items "clothing" "drinkware" etc. isn't working properly so please don't refer to that.)
I will make a percentage off each sale, so anyone who buys is directly helping me, an MG patient. Thank you for browsing, thank you for purchasing and thank you for promoting awareness of Myasthenia Gravis!
http://www.cafepress.com/fightmg
Wednesday, May 8, 2013
God speaks
Hi everyone. This may sound weird, but I just felt a voice within telling me to blog. I don't really know what I'm supposed to write about so I'll just starting writing. I guess I'll start with a little update. (ps. and then a thought hit me so I typed it but included it as the last paragraph... oh the build up... read on... haha)
So my INR (blood clotting level basically) needs to be within 2-3 to be therapeutic. Fridays level was 3.0. That scared me a little bit since it got to the highest end. The higher it is the more your chance for bleeding risk. So they had me take half a tablet 2 days and normal tablet the rest of the days. I had it checked again yesterday and it was 2.2. I guess that worked. But I'm not a big fan of that. I'd rather go to 4mg instead of the 5mg I'm on... because now they don't want to test again until Monday... trying to spread out my visits further and further. But if it went down because I took half a tablet and now I'm back to a full tablet I'm wondering what it will be in a week. I might try to get it checked Friday instead. Eh, do not fear and trust in God. Ok ok I'll listen to my own advice.
Monday-Tuesday this week I wore the 24 hour holter monitor. Results will be reported to my doctor in 4-7 business days. Then I have the echo next Friday. I'm sure I'll find out all the answers after that. He wants to see exactly what is going on before setting me up with a cardiologist because of specialties within the specialty aka different types of cardiologists. Please pray its nothing incredibly serious. Heart surgery is not on my to do list nor do I want it to be.
The rest of this week I have a visit with my surgeon I guess just to make sure everything is healing ok, and then an initial visit with a hematologist at a different hospital. They tried to set me up at the hospital I was inpatient and I said to myself absolutely no way. I'm done with that place after the surgeon visit, I hope to God at least. Anyways, speaking of my surgery which kind of went under the radar after my PE diagnosis, however that is the main reason I started the blog so I should speak about it. My stitches were taken out while I was still in the hospital. It bled a little which I was concerned about being on blood thinners, but it stopped. I have 3 incision sites at least that I can tell. I thought there would be more because they said 3-4 surgery incisions and 1 chest tube site... but it looks like 3 all together. They are still red and when my clothing hugs against it it still hurts a little so I am still putting gauze there when I have to actually dress in real clothes to go out lol. But all incisions are pretty small and pretty well placed that you really aren't going to see them except when I'm in a swimsuit... and even then it's pretty well placed to not stand out unless you want to stair at the side of my chest. Job well done on that, though the visual scars were the least of my concern.
Speaking of scars, I'm hurting. I've been hurting a lot lately. Not physically as much as emotionally. The biggest scar is the one unseen on my heart. God I pray for healing on all accounts. This is hard. I appreciate the continued support by everyone on what I am unable to speak of here.
This goes back to another post where I talked about being positive vs. being negative. I was thinking more about that. How can having a chronic illness and going through even so much more than that be positive? Well, through attitude. But an outward even inward attitude on a situation doesn't mean that inside you aren't incredibly hurting. Again, to say you're not and to be 100% positive is just lying to yourself and everyone around you. Why do I feel the need to censor myself when I'm down. I want to blog about it, post about it, call out for help... and yet I stop and I don't. Why? Because of responses in the past. Responses that discouraged me from fully expressing myself, responses that really brought me down, responses that ridiculed me for saying anything negative. I shouldn't have to censor myself like that. I'm trying my best to be positive and it's better seen than read here. Like I said writing is my escape so I should be able to write about the negative because those are the times I am in need of writing the most. I can speak of positive at any time but those aren't the times I NEED to write to get it out. So if you see more negative than positive that's why. And yet again I find myself explaining myself when I shouldn't have to. So maybe I'll try it from here on. Maybe I'll start blogging whenever I need to as opposed to censoring myself. I'm trying to promote awareness of MG but at the moment MG is kind of behind the scenes to my PE and heart. I guess those who care and those who want to know will still continue to read.
Did you ever wonder if what you say affects another person? Not as in if it hurts them or helps them specifically, but if perhaps words came out of your mouth purely for the sake of another? That perhaps God is using you as a messenger to deliver His word? I was once told don't keep anything in, if you're going to say something say it. Why? Because of that very purpose. You don't want to deny God or a blessing he is bringing upon another through you. Like I said before, be that blessing. Be that blessing. Wow, I just realized this goes back also to when I said if I had my way nothing would be hidden. Good or bad, maybe someone needs to learn from that experience. Maybe someone needs to hear it. And like a puzzle my thoughts come together. I was thinking this probably makes no sense to anyone else, but then I thought back to the words I literally just typed. If it makes sense to one person, speaks to one person, maybe I served my purpose at the moment. Live it. Live in faith. Live for Him because He died for YOU. Love. That is love. God is love. Amen to that. Woo that just went off on a tangent. No apologies for speaking the good word though. Again, if you don't like what I have to say you don't have to read it, but, I hope you do. I really hope you do. God bless.
I guess that's all for now :)
So my INR (blood clotting level basically) needs to be within 2-3 to be therapeutic. Fridays level was 3.0. That scared me a little bit since it got to the highest end. The higher it is the more your chance for bleeding risk. So they had me take half a tablet 2 days and normal tablet the rest of the days. I had it checked again yesterday and it was 2.2. I guess that worked. But I'm not a big fan of that. I'd rather go to 4mg instead of the 5mg I'm on... because now they don't want to test again until Monday... trying to spread out my visits further and further. But if it went down because I took half a tablet and now I'm back to a full tablet I'm wondering what it will be in a week. I might try to get it checked Friday instead. Eh, do not fear and trust in God. Ok ok I'll listen to my own advice.
Monday-Tuesday this week I wore the 24 hour holter monitor. Results will be reported to my doctor in 4-7 business days. Then I have the echo next Friday. I'm sure I'll find out all the answers after that. He wants to see exactly what is going on before setting me up with a cardiologist because of specialties within the specialty aka different types of cardiologists. Please pray its nothing incredibly serious. Heart surgery is not on my to do list nor do I want it to be.
The rest of this week I have a visit with my surgeon I guess just to make sure everything is healing ok, and then an initial visit with a hematologist at a different hospital. They tried to set me up at the hospital I was inpatient and I said to myself absolutely no way. I'm done with that place after the surgeon visit, I hope to God at least. Anyways, speaking of my surgery which kind of went under the radar after my PE diagnosis, however that is the main reason I started the blog so I should speak about it. My stitches were taken out while I was still in the hospital. It bled a little which I was concerned about being on blood thinners, but it stopped. I have 3 incision sites at least that I can tell. I thought there would be more because they said 3-4 surgery incisions and 1 chest tube site... but it looks like 3 all together. They are still red and when my clothing hugs against it it still hurts a little so I am still putting gauze there when I have to actually dress in real clothes to go out lol. But all incisions are pretty small and pretty well placed that you really aren't going to see them except when I'm in a swimsuit... and even then it's pretty well placed to not stand out unless you want to stair at the side of my chest. Job well done on that, though the visual scars were the least of my concern.
Speaking of scars, I'm hurting. I've been hurting a lot lately. Not physically as much as emotionally. The biggest scar is the one unseen on my heart. God I pray for healing on all accounts. This is hard. I appreciate the continued support by everyone on what I am unable to speak of here.
This goes back to another post where I talked about being positive vs. being negative. I was thinking more about that. How can having a chronic illness and going through even so much more than that be positive? Well, through attitude. But an outward even inward attitude on a situation doesn't mean that inside you aren't incredibly hurting. Again, to say you're not and to be 100% positive is just lying to yourself and everyone around you. Why do I feel the need to censor myself when I'm down. I want to blog about it, post about it, call out for help... and yet I stop and I don't. Why? Because of responses in the past. Responses that discouraged me from fully expressing myself, responses that really brought me down, responses that ridiculed me for saying anything negative. I shouldn't have to censor myself like that. I'm trying my best to be positive and it's better seen than read here. Like I said writing is my escape so I should be able to write about the negative because those are the times I am in need of writing the most. I can speak of positive at any time but those aren't the times I NEED to write to get it out. So if you see more negative than positive that's why. And yet again I find myself explaining myself when I shouldn't have to. So maybe I'll try it from here on. Maybe I'll start blogging whenever I need to as opposed to censoring myself. I'm trying to promote awareness of MG but at the moment MG is kind of behind the scenes to my PE and heart. I guess those who care and those who want to know will still continue to read.
Did you ever wonder if what you say affects another person? Not as in if it hurts them or helps them specifically, but if perhaps words came out of your mouth purely for the sake of another? That perhaps God is using you as a messenger to deliver His word? I was once told don't keep anything in, if you're going to say something say it. Why? Because of that very purpose. You don't want to deny God or a blessing he is bringing upon another through you. Like I said before, be that blessing. Be that blessing. Wow, I just realized this goes back also to when I said if I had my way nothing would be hidden. Good or bad, maybe someone needs to learn from that experience. Maybe someone needs to hear it. And like a puzzle my thoughts come together. I was thinking this probably makes no sense to anyone else, but then I thought back to the words I literally just typed. If it makes sense to one person, speaks to one person, maybe I served my purpose at the moment. Live it. Live in faith. Live for Him because He died for YOU. Love. That is love. God is love. Amen to that. Woo that just went off on a tangent. No apologies for speaking the good word though. Again, if you don't like what I have to say you don't have to read it, but, I hope you do. I really hope you do. God bless.
I guess that's all for now :)
Saturday, May 4, 2013
Expanding on my thoughts
Whoa... 3 blog posts in 3 days... on a roll here.
Yesterday I ended in talking about how I know some people are going to find the post depressing or negative, and thus I said, then don't read it. Here's the thing... I stand by my words that I intend for it to be positive, however... even if it is negative, even if it is depressing, so what? Why? If I'm going to take the time to blog why would I edit my own internal thoughts to only tell half the story, only the positive side? I'm not. I'm not one to lie or hide anything, like I said before if I had it my way nothing would be hidden. I'm going to tell it like it is, and what and how I feel. No one's life is 100% positive or good all the time. No one. If you think it is you're probably lying to yourself, you're probably bottling up feelings inside that will one day come exploding out. I'm not going to let that happen. I'm going to release those feelings, and since I can no longer run or play basketball or use my punching bag or even get out on my own... I'm going to write. It's my release.
That leads to my next thought. My initial and still present intent for this blog was to keep family and friends updated as well as spread awareness of this horrible disease. It's going to include the ups, the downs, the good, the bad, and everything in between including how I'm feeling in that moment. If it didn't then it wouldn't be fair to any other MGers, family or friends, reading this who want to learn the full extent of what this life entails. I hope people can see through the bad moments into the fact that I'm still pushing through it and that's what we all need to do. There will be negative moments, negative experiences, negative reactions... it will be really tough at times... but keeping your mind focused on the positive will get you through it. But that doesn't mean every word I write has to be positive. It means no matter what the struggle, having that positive outlook to return to will be a saving grace for getting me through it.
If you don't want to hear the bad stuff, I suggest just staying away, because when you have a chronic illness there is bound to be a lot of bad stuff. But I do encourage everyone not to stay away. Read my blog and stay in my life. I've said before I could really use the support. Here's the thing... many people run the other way or shut the door when something like this happens. It's already happened, and it hurts. Maybe some people can't deal with it, or don't want to deal with it, or who knows what the reasoning is. But as hard as it might be for you dealing with a change due to what I'm going through- remember, I'm the one going through it. Some will think it's no big deal because they've been through worse. God bless you for getting through it. Some will think it's unbelievable the strength I have to keep going. God bless you too for thinking so highly of me. Just remember everything is relative. For me, this is incredibly hard because all my life I was healthy and had everything I could need. Now I feel it's all being taken away piece by piece and it's hard to reform what is left into what I need to keep going. In addition to God, what I need is you. Yeah, you. All of you, we all serve a purpose...
See there are so many people I met through my life but they kind of came and went, we parted ways. And now I'm reconnecting with so many. We find common ground whether it be relating to an autoimmune disease, a heart problem, chronic health condition, getting through something incredibly difficult, losing something or someone, etc. It's as if God introduced us at the moment that was available knowing there would be a time such as now that I couldn't get out and meet those people- so they would already be there waiting for that re-connection. Thank you all who have been those people.
And then there are many many others whom I was close with and seem like that closeness is departing. Like I mentioned in the last post, having to go through something like this does change you and your perspective on life and such. It's not that I want to lose those relationships/friendships, but it is harder to relate. A lot of friends are married having children and moving up in their careers... that gives less and less to relate to. But, a true friendship/relationship will last in testing times...
If someone runs at first opportunity to do so, at the moment times become challenging, were they ever really a true friend to begin with? Being there just when it's fun or convenient, I don't think is really a friendship/relationship... it's kind of selfish to be honest. And I say that to myself as well. I've done the same, I know, and I'm sorry. It's not until you are put into a life altering scenario such as this that you realize that. And now I can't be there for others in the exact way that I want or have the energy for... but I can try my best to be there how I can, and that's all I ask of anyone else too. Let's be there for one another. We're all put on this earth for a reason. We're all given certain and different gifts/qualities. Let those gifts/qualities shine through. Be a blessing. Be the miracle you're hoping for yourself, for when you give to others you'll receive so much more in return. I know it, I just know it. Just like I knew I had something wrong in my chest. Intuition... God's voice... it exists.
And just like a cassette tape (remember those?) comes to an end... as have my thoughts, for now. I think God sends me a message to speak about and when I get it out then its just time to wait for another one to come along. What message are you putting out there?
Yesterday I ended in talking about how I know some people are going to find the post depressing or negative, and thus I said, then don't read it. Here's the thing... I stand by my words that I intend for it to be positive, however... even if it is negative, even if it is depressing, so what? Why? If I'm going to take the time to blog why would I edit my own internal thoughts to only tell half the story, only the positive side? I'm not. I'm not one to lie or hide anything, like I said before if I had it my way nothing would be hidden. I'm going to tell it like it is, and what and how I feel. No one's life is 100% positive or good all the time. No one. If you think it is you're probably lying to yourself, you're probably bottling up feelings inside that will one day come exploding out. I'm not going to let that happen. I'm going to release those feelings, and since I can no longer run or play basketball or use my punching bag or even get out on my own... I'm going to write. It's my release.
That leads to my next thought. My initial and still present intent for this blog was to keep family and friends updated as well as spread awareness of this horrible disease. It's going to include the ups, the downs, the good, the bad, and everything in between including how I'm feeling in that moment. If it didn't then it wouldn't be fair to any other MGers, family or friends, reading this who want to learn the full extent of what this life entails. I hope people can see through the bad moments into the fact that I'm still pushing through it and that's what we all need to do. There will be negative moments, negative experiences, negative reactions... it will be really tough at times... but keeping your mind focused on the positive will get you through it. But that doesn't mean every word I write has to be positive. It means no matter what the struggle, having that positive outlook to return to will be a saving grace for getting me through it.
If you don't want to hear the bad stuff, I suggest just staying away, because when you have a chronic illness there is bound to be a lot of bad stuff. But I do encourage everyone not to stay away. Read my blog and stay in my life. I've said before I could really use the support. Here's the thing... many people run the other way or shut the door when something like this happens. It's already happened, and it hurts. Maybe some people can't deal with it, or don't want to deal with it, or who knows what the reasoning is. But as hard as it might be for you dealing with a change due to what I'm going through- remember, I'm the one going through it. Some will think it's no big deal because they've been through worse. God bless you for getting through it. Some will think it's unbelievable the strength I have to keep going. God bless you too for thinking so highly of me. Just remember everything is relative. For me, this is incredibly hard because all my life I was healthy and had everything I could need. Now I feel it's all being taken away piece by piece and it's hard to reform what is left into what I need to keep going. In addition to God, what I need is you. Yeah, you. All of you, we all serve a purpose...
See there are so many people I met through my life but they kind of came and went, we parted ways. And now I'm reconnecting with so many. We find common ground whether it be relating to an autoimmune disease, a heart problem, chronic health condition, getting through something incredibly difficult, losing something or someone, etc. It's as if God introduced us at the moment that was available knowing there would be a time such as now that I couldn't get out and meet those people- so they would already be there waiting for that re-connection. Thank you all who have been those people.
And then there are many many others whom I was close with and seem like that closeness is departing. Like I mentioned in the last post, having to go through something like this does change you and your perspective on life and such. It's not that I want to lose those relationships/friendships, but it is harder to relate. A lot of friends are married having children and moving up in their careers... that gives less and less to relate to. But, a true friendship/relationship will last in testing times...
If someone runs at first opportunity to do so, at the moment times become challenging, were they ever really a true friend to begin with? Being there just when it's fun or convenient, I don't think is really a friendship/relationship... it's kind of selfish to be honest. And I say that to myself as well. I've done the same, I know, and I'm sorry. It's not until you are put into a life altering scenario such as this that you realize that. And now I can't be there for others in the exact way that I want or have the energy for... but I can try my best to be there how I can, and that's all I ask of anyone else too. Let's be there for one another. We're all put on this earth for a reason. We're all given certain and different gifts/qualities. Let those gifts/qualities shine through. Be a blessing. Be the miracle you're hoping for yourself, for when you give to others you'll receive so much more in return. I know it, I just know it. Just like I knew I had something wrong in my chest. Intuition... God's voice... it exists.
And just like a cassette tape (remember those?) comes to an end... as have my thoughts, for now. I think God sends me a message to speak about and when I get it out then its just time to wait for another one to come along. What message are you putting out there?
Friday, May 3, 2013
My heart joins the club
So those symptoms I last spoke of... the pain/labored breathing and such in my chest and back... well it seems as quickly as they came on they have basically gone away... but not before convincing me to get it checked out. As soon as I made the decision to ask the doctor to check it out, symptoms left. Perhaps God's way of letting me know. Unfortunately it looks like I can add my heart to my list of organs/systems that want to quit on me.
My doctor ordered an EKG. The tech was having issues with one particular reading. Typically I'd think she was doing something wrong or the machine wasn't registering right, but today I just had a feeling that wasn't the case. And by the looks of her face it seemed like something was off. My doctor called me a few hours later. I should have known immediately, as when the doctor himself calls it's not going to be good news. My EKG was abnormal. He talked in all these doctor terms I didn't understand but said it seems I have a certain heart condition. Looking it up all that popped out to me was "may cause sudden death." Alrighty then, so can a car. He wants me to do a holter monitor Monday-Tuesday and get an echocardiogram, which the soonest available was in 2 weeks unless he changes it to stat. After those tests I should have more answers on what exactly is going on and he will set me up with a cardiologist.
I asked if this could be caused by, and therefore go away after, the PE. His answer was a clear no. He asked if I had previously had heart testing and I said yes in San Antonio but they didn't find anything really wrong. So I wonder, did they miss something? Or did this just develop? And if it just developed once again I'm very annoyed with the hospital I was at. When I was there for the pulmonary embolism, the pulmonologist and cardiologist and I believe even the hematologist talked about an echocardiogram. But the surgery team overruled everything. I even asked if they could do it because I was concerned about my heart and they said they saw no reason. Now I'm starting to wonder if they are trying to bring on problems in people. I mean really... after the surgery I talked about my increased breathing trouble and asked for lung imaging and they refused... and then after pe I talked about my chest symptoms and asked for heart testing and they refused. Sounds a bit conspiracy theory-ish to me. And also angers me a bit. Perhaps both of these things could have been prevented.
I don't think it's quite registered.... and maybe it shouldn't. I don't have a confirmed definite diagnosis, just prelim until all results are in. So I'm going to try and forget about it until I know more. It definitely is discouraging though when I keep getting more and more problems. Please God, can you turn my life around for me? Bless myself and my family with all that is good, loving, happy and healthy?
I didn't add this in my last post because I forgot, but here goes nothing. When I last met with my doctor he basically straight up told me how serious a pulmonary embolism is, as in I'm pretty lucky I'm alive. I mean I already knew this, but it was then that I realized how amazingly fortunate I was. He explained by the sounds of everything- how I had pain in my calf, pain in my calf, pain in my calf, and then no pain and pulmonary embolism (which I told the hospital by the way but they didn't find anything apparently) that it sounds like I had a clot in my leg and that it broke off in pieces and went to my lungs... due to the fact that I have many multiple clots in both sides of my lungs. He said this is actually a very good thing because had it broken off in one piece it would be one major clot and that's what could have killed me before even having a chance to get to the ER. Wow. It really makes me realize how close I was. Wow.
And now today adding a heart problem into the mix, for the first time it kind of hit me that who knows how long I have. I mean I've thought about that before that no one knows how long they have. But today it was moreso like the song, live like you were dying. Maybe I should, what's the worst that could happen? I live to be 100 and look back and say that was awesome? I mean really.
Health problems really change your life. It changes who you are closest with, who you can relate to, how you live, how you look at things, what you do. It changes everything. Doctor visits, pains and bills aside, I tend to think it changes everything for the better.
I know there will most likely be some people who read this and think oh how depressing, why would she talk about that, how negative etc. etc. You know what? Then don't read my blog. End of story. I appreciate everyone who does read it and the point of a blog- to be able to express myself. And I mean this all in a positive light. I AM ALIVE! I'm still fighting! I survived a PE! I'm stronger than I've ever been at the same time as being weaker than I've ever been and even if that makes no sense to anyone else, it makes perfect sense to me.
ps. I sold my first MG shirt! As soon as I create better/more designs I'll post a link if any other fellow MGers or supporters would like to purchase :)
My doctor ordered an EKG. The tech was having issues with one particular reading. Typically I'd think she was doing something wrong or the machine wasn't registering right, but today I just had a feeling that wasn't the case. And by the looks of her face it seemed like something was off. My doctor called me a few hours later. I should have known immediately, as when the doctor himself calls it's not going to be good news. My EKG was abnormal. He talked in all these doctor terms I didn't understand but said it seems I have a certain heart condition. Looking it up all that popped out to me was "may cause sudden death." Alrighty then, so can a car. He wants me to do a holter monitor Monday-Tuesday and get an echocardiogram, which the soonest available was in 2 weeks unless he changes it to stat. After those tests I should have more answers on what exactly is going on and he will set me up with a cardiologist.
I asked if this could be caused by, and therefore go away after, the PE. His answer was a clear no. He asked if I had previously had heart testing and I said yes in San Antonio but they didn't find anything really wrong. So I wonder, did they miss something? Or did this just develop? And if it just developed once again I'm very annoyed with the hospital I was at. When I was there for the pulmonary embolism, the pulmonologist and cardiologist and I believe even the hematologist talked about an echocardiogram. But the surgery team overruled everything. I even asked if they could do it because I was concerned about my heart and they said they saw no reason. Now I'm starting to wonder if they are trying to bring on problems in people. I mean really... after the surgery I talked about my increased breathing trouble and asked for lung imaging and they refused... and then after pe I talked about my chest symptoms and asked for heart testing and they refused. Sounds a bit conspiracy theory-ish to me. And also angers me a bit. Perhaps both of these things could have been prevented.
I don't think it's quite registered.... and maybe it shouldn't. I don't have a confirmed definite diagnosis, just prelim until all results are in. So I'm going to try and forget about it until I know more. It definitely is discouraging though when I keep getting more and more problems. Please God, can you turn my life around for me? Bless myself and my family with all that is good, loving, happy and healthy?
I didn't add this in my last post because I forgot, but here goes nothing. When I last met with my doctor he basically straight up told me how serious a pulmonary embolism is, as in I'm pretty lucky I'm alive. I mean I already knew this, but it was then that I realized how amazingly fortunate I was. He explained by the sounds of everything- how I had pain in my calf, pain in my calf, pain in my calf, and then no pain and pulmonary embolism (which I told the hospital by the way but they didn't find anything apparently) that it sounds like I had a clot in my leg and that it broke off in pieces and went to my lungs... due to the fact that I have many multiple clots in both sides of my lungs. He said this is actually a very good thing because had it broken off in one piece it would be one major clot and that's what could have killed me before even having a chance to get to the ER. Wow. It really makes me realize how close I was. Wow.
And now today adding a heart problem into the mix, for the first time it kind of hit me that who knows how long I have. I mean I've thought about that before that no one knows how long they have. But today it was moreso like the song, live like you were dying. Maybe I should, what's the worst that could happen? I live to be 100 and look back and say that was awesome? I mean really.
Health problems really change your life. It changes who you are closest with, who you can relate to, how you live, how you look at things, what you do. It changes everything. Doctor visits, pains and bills aside, I tend to think it changes everything for the better.
I know there will most likely be some people who read this and think oh how depressing, why would she talk about that, how negative etc. etc. You know what? Then don't read my blog. End of story. I appreciate everyone who does read it and the point of a blog- to be able to express myself. And I mean this all in a positive light. I AM ALIVE! I'm still fighting! I survived a PE! I'm stronger than I've ever been at the same time as being weaker than I've ever been and even if that makes no sense to anyone else, it makes perfect sense to me.
ps. I sold my first MG shirt! As soon as I create better/more designs I'll post a link if any other fellow MGers or supporters would like to purchase :)
Thursday, May 2, 2013
Home update
Hi, sorry I'm not in any way peppy right now so this is pretty much going to be getting to the facts and that's it.
Good news- I got discharged home on Sunday. My oxygen saturation was still dropping as low as 79 but of course any time they witnessed it, it was too high to send me home with oxygen. So room air it is. Heart rate still going as high as 150, scary, but what can you do. It's nice to have real food and sleep in my own bed but that's about it. Monday was my first doctor's appointment to see my primary. My blood pressure was scary low again. Tuesday was my Coumadin/Warfarin clinic visit and first INR out of the hospital. 2.6... within range but jumped quite a bit from the 2.0 I left the hospital at. Next check is tomorrow.
Monday I developed this horrible pain but using the word pain isn't quite right I don't think. It was kind of like what sent me into the ER that gave me the PE diagnosis, but different and actually worse. Of course it happened right after I got out of the doctors office. To be completely honest, the only reason I didn't go back to the ER was because I didn't want to put my parents through any more time in a hospital. That's literally the only reason. I should have gone.
Since Monday it's gotten a little better but still there. I joined a PE group on facebook and they all talk about how many times they go back to the ER because you just never know what is serious and what is not and it's better safe than sorry. Now add MG to it and you got a whole new mess. It's weird and I have no idea if it is MG, PE or something else. It started on the left side of my chest then wrapped around my back, then just back, now today its the right side back and chest and less on the left side. It's not constant pain and again pain isn't quite the best word. It's when I take a deep breath or sneeze or cough or blow my nose or laugh. But then there's also the shortness of breath and seems like increased labored breathing.
And then today I collapsed. I was ridiculously stressed by a situation that should in no way have occurred but it did. My body went completely weak on me and I collapsed to the floor. That's the first time that's ever happened. I mean I've been unable to walk before but never gone straight from standing to floor. And then you know when you see a dog panting and their diaphragm literally goes up and down fast, that's what happened with me. It was so hard to breathe for a while. And yes I know I'm comparing myself to a dog. Whatever, I love dogs. So of course now another concern is that in hitting the ground, did I hit it hard enough to cause any bleeding? Being on the warfarin I'm told anything that of course my bleeding risk is high and go to the ER if there is any chance. I didn't really fall and I'm pretty sure I didn't hit hard, and it was rug, but who knows.
My primary said he always says to go to the ER with those symptoms... but again, if it was the absolute worse Monday and since gotten better, do I really have to go to the ER. Better safe than sorry but my other concern is dealing with the hospital again. I absolutely will not return to the one I've been at the past month. So do I go to one of the closest ones- one I know has an MG doctor but was not at all my favorite, one a little further away that my primary is out of and known to be a very good hospital but not very experienced with MG, or go all the way next door to the hospital I came from that is top rated and experienced in MG? Let's hope I don't have to go to any but that's kind of unlikely.
Right now my plan is to try to make it through the night and go to my INR visit tomorrow. It's just with the nurse but if I tell her my symptoms and she sees me and does my vitals and THEN says go to the ER, I'll go. Until then, pray I improve and not fall downhill. Seeing as I'm breathing and typing I think I'm going to be ok, but with MG ok can turn to crisis in a second, and with PE I'm still learning everything so I really have absolutely no idea.
I miss certain people VERY much so and it's hard to go through this without them. God help, I certainly need it right now because in no way can I get through this alone. Strength through faith... unfortunately even struggling with that right now.
Good news- I got discharged home on Sunday. My oxygen saturation was still dropping as low as 79 but of course any time they witnessed it, it was too high to send me home with oxygen. So room air it is. Heart rate still going as high as 150, scary, but what can you do. It's nice to have real food and sleep in my own bed but that's about it. Monday was my first doctor's appointment to see my primary. My blood pressure was scary low again. Tuesday was my Coumadin/Warfarin clinic visit and first INR out of the hospital. 2.6... within range but jumped quite a bit from the 2.0 I left the hospital at. Next check is tomorrow.
Monday I developed this horrible pain but using the word pain isn't quite right I don't think. It was kind of like what sent me into the ER that gave me the PE diagnosis, but different and actually worse. Of course it happened right after I got out of the doctors office. To be completely honest, the only reason I didn't go back to the ER was because I didn't want to put my parents through any more time in a hospital. That's literally the only reason. I should have gone.
Since Monday it's gotten a little better but still there. I joined a PE group on facebook and they all talk about how many times they go back to the ER because you just never know what is serious and what is not and it's better safe than sorry. Now add MG to it and you got a whole new mess. It's weird and I have no idea if it is MG, PE or something else. It started on the left side of my chest then wrapped around my back, then just back, now today its the right side back and chest and less on the left side. It's not constant pain and again pain isn't quite the best word. It's when I take a deep breath or sneeze or cough or blow my nose or laugh. But then there's also the shortness of breath and seems like increased labored breathing.
And then today I collapsed. I was ridiculously stressed by a situation that should in no way have occurred but it did. My body went completely weak on me and I collapsed to the floor. That's the first time that's ever happened. I mean I've been unable to walk before but never gone straight from standing to floor. And then you know when you see a dog panting and their diaphragm literally goes up and down fast, that's what happened with me. It was so hard to breathe for a while. And yes I know I'm comparing myself to a dog. Whatever, I love dogs. So of course now another concern is that in hitting the ground, did I hit it hard enough to cause any bleeding? Being on the warfarin I'm told anything that of course my bleeding risk is high and go to the ER if there is any chance. I didn't really fall and I'm pretty sure I didn't hit hard, and it was rug, but who knows.
My primary said he always says to go to the ER with those symptoms... but again, if it was the absolute worse Monday and since gotten better, do I really have to go to the ER. Better safe than sorry but my other concern is dealing with the hospital again. I absolutely will not return to the one I've been at the past month. So do I go to one of the closest ones- one I know has an MG doctor but was not at all my favorite, one a little further away that my primary is out of and known to be a very good hospital but not very experienced with MG, or go all the way next door to the hospital I came from that is top rated and experienced in MG? Let's hope I don't have to go to any but that's kind of unlikely.
Right now my plan is to try to make it through the night and go to my INR visit tomorrow. It's just with the nurse but if I tell her my symptoms and she sees me and does my vitals and THEN says go to the ER, I'll go. Until then, pray I improve and not fall downhill. Seeing as I'm breathing and typing I think I'm going to be ok, but with MG ok can turn to crisis in a second, and with PE I'm still learning everything so I really have absolutely no idea.
I miss certain people VERY much so and it's hard to go through this without them. God help, I certainly need it right now because in no way can I get through this alone. Strength through faith... unfortunately even struggling with that right now.
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