Whoa has it really been that long since I last post? I don't know what's been up with me lately but I've been less inclined to write... been reading a whole heck of a lot though. Now it's your time to read, so here we go.
I'll give you another little update. I had my follow up with my pulmonologist. He says the additional testing came out fairly normal... yay. So more and more and more we have that everything breathing points to Myasthenia. Still, bad that I'm not breathing well, but good that it is attributed to one and only one thing as far as we know.
He is trying to get me in sooner with the MG specialist there to get on the same page with treatment... do I or do I not take immune suppressants that is the question. There are a lot of serious side effects/risks with them but my MG is not controlled. The other option is more plasmapheresis but with the warfarin that's a bit of a problem. Hmmm get another central line (oww) put in and undergo inpatient treatments, or take toxic meds that put me at risk of catching anything and everything out there. Neither one is a promise to work. Time will tell.
He does want me to see an endocrinologist. I saw one back in San Antonio and my levels were off, thyroid slightly enlarged with nodules but they said it was nothing to worry about. Well my pulmonologist said many of my symptoms point endocrin and he wants me to double/triple check it out. I was thinking about doing that anyways, just waiting for all the craziness from planning the surgery and then complications of surgery to cool down. So I'll have that appointment in about a month. I would love if we could just get down to the bottom of everything. Yes I have various multiple specialists to see... all for things outside of MG. Most everyone agrees there is still something lurking. The question is what if anything, can we find it, and when. I think I'll feel more confident after seeing these other specialists in having a better idea of all of those answers and providing relief one way or the other. And hey, if it's just MG, then thank you God! I certainly don't need more to add to the list.
There was a bit of bad news at my pulmonologist follow up. He looked at my chest CT scan. There is a nodule that wasn't there before. Thus he wants me to have annual scans to watch if it grows/changes. There can be multiple explanations for this. I'm just hoping it's nothing serious. And honestly, at this point, if it is serious I worry more for my family dealing with it than myself. I've become pretty darn strong at this point. But please pray it doesn't turn into anything. That of course would be best.
My pains have returned. I used to wake up at night and every morning and sometimes throughout the day with pains in my back, neck, head, joints, sometimes muscles. It went away for quite a while and I forgot about it. Well its back. I think it's because my body misses my own bed in San Antonio. That's what I'm going to tell myself, and the sooner I can return the better. I can't wait. I'm determined to get back there and carry on carry on.
What else? Well I went to a wedding! Ok not really. I was invited to a wedding and my parents went to the wedding and I just popped in to say hi and congratulations. I didn't think my body would be able to tolerate it. And I'd just want to dance dance dance and not be able to. But you know what? I'm happy with myself that I decided to stop in. The 15 minutes I was there did drain me but it was totally worth it.
Lately I think I've been a little extra hopeful/positive. I find myself thinking "could I be going into remission?!?!" or "maybe I'm ok now!" and well then my body reminds me "um no, calm yourself." So I rest and wait until I get another burst of energy to get all excited again. One day.... BUT it might not be one day at all. It is what it is and I'm not just dealing with it, I'm making the most of it. I'm living and loving and what's better than that? It's not the obstacle, it's how we overcome it.
Thank you for tuning in for Myasthenia Gravis Awareness month. But awareness doesn't end here because MG doesn't end here. Let's keep getting the word out until rare only means few people have it as opposed to no one knows what the heck it is. Thank you and Happy July!
Sunday, June 30, 2013
Wednesday, June 19, 2013
Bitter turned sweet
The update you've all been waiting for... haha. I've caused so much build up to this you're probably going to read it and be like "that's it?" But I got you in here didn't I? :) No, really, it's pretty sweet news... after the bitter part.
So last Friday I developed pain in my leg, around my calf. Well that pain kept persisting. Sunday I also had increased shortness of breath and my heart rate went up to 169 just while walking. Yikes. The highest I've seen it was 150ish. So, you know, that's a bit concerning. I talked to other PE patients and basically they all said get your butt to the ER, better safe than sorry. I struggled with what to do because 1. it was Father's Day and I did not want to do that to my dad, and 2. even though I wanted it to end up being nothing I feared if I went to the ER and it was nothing I'd get written off as anxiety once again. So I stuck it out and tried to completely ignore the symptoms, telling myself if it is still bad Monday maybe I'll check in with the doctor.
Sunday, I also started my new prescription vitamin D- 50,000 IU- huge dosage. I've been taking over the counter 1,000 IU a day but that wasn't working and my level is way too low my doctor said. So I took it and told myself this is going to work and I'll be feeling better in no time (since vitamin D deficiency has been known to actually cause a variety of symptoms). Well in the middle of the night I woke up multiple times in a ton of pain in my abdomen and feeling very very nauseated, forcing myself not to throw up and (excuse this if it's too direct but we all do it) having to urinate way more often that normal. When I went in the bathroom I looked in the mirror and was as pale as a ghost! I almost woke my parents up then but I again tried to ignore it and went back to sleep... until I woke up again and again. I just felt so sick. I asked if anyone else felt sick wondering if it could be from food we ate, but no one was sick and I've had food poisoning before which wasn't the same as this.. I think I was still trying to convince myself all was fine.
So Monday morning the persisting leg pain/shortness of breath/increased heart rate partnered with what seemed to be a reaction to the vitamin D convinced me to get this checked out. I was back and forth about urgent care or ER. One was one way and one was the other so my mom said decide. I think I landed on urgent care but when my mom pulled out of the driveway I said to myself "God, if you want me to go to the ER instead, make it known." Well when we got to the end of the block they had the road completely torn up and we had to reverse all the way back down the street. I took that as my sign and said let's go to the ER.
After getting a room, it was initially one of the most efficient visits to the ER I've ever had. A doctor was in in no time, I didn't even realize they took my blood while talking to the dr, and next thing I knew I was hooked up to a bunch of monitors. You would have thought I told them I was having a heart attack for how quick they responded... I guess PE is nothing to mess with. So they wanted to do what I assumed they would want to do... scan my leg and scan my chest. I really didn't want another chest scan because of the radiation but how could I say no when I'm having the symptoms. So that's what they did. The doctor said if I threw another clot OR my INR was too low they would have to admit me and start the heparin drip. Oh God please no.
I'll let you know the bad news first. I was having a reaction to the vitamin D, which of course happens to this slim number of people that I always happen to land within. My calcium went up which this vitamin D is known to possibly do but what they were more concerned about (sorry again) was how frequently I was using the bathroom and how ridiculously clear it was. The doctor started talking about this could lead to renal failure or something like that. Yikes. Well long story short, I'm told to never take that again (duh). Hoping that my symptoms subside soon because they are still ongoing. After this gets out of my system, we'll try slightly upping my over the counter vitamin D dosage... hopefully something can get figured out to get my vitamin D up without causing me more problems.
Now the good news is my INR was 2.5... pretty much perfect! The leg ultrasound showed no clots and the chest scan showed no clots. Read that again to understand why this was AWESOME news... The chest scan showed NO clots!!!!! Now, there is chance that they didn't show up due to whatever error or whatnot, but assuming everything is correct, then my PE blood clots have dissolved!!! Exactly 2 months out from the PE diagnosis. Awesome awesome awesome awesome! They initially told me it would probably take a couple months for my body to dissolve the clots but for some reason I was still shocked that it actually happened. I still have to be on the warfarin for the full 6 months or however long they finally decide to prevent reclots but this eases my mind a bit knowing that if my INR isn't quite high enough I don't have to be quite as concerned... just have to make sure it doesn't get too high because the bleed risk is still there.
Well the question still stands then what is causing my leg pain that is still 5 days later happening and why am I still getting increased shortness of breath and fast heart rate... but that's not anything for an ER to deal with. My cardiologist appointment should tell me more and it was supposed to be yesterday but the doctor was sick so it had to be rescheduled for July. As far as the leg, I guess I'm just dealing with it for now and hopefully it just goes away on it's own.
And so, other than of course still receiving treatment for PE... my only major current problem (knock on wood and praise God) is MG! That brings me to a little update in that regard. I've had many people tell me I'm looking good, looks like I'm doing better or hope that I'm better, hope that I get well soon... so on and so forth. Here's the thing... I'm not any better MG wise. The reason people might thing that is because what is better about me is my positive attitude. So it might seem like I'm better when in fact I'm the same but responding better. Make sense? Furthermore, there is no getting well soon unfortunately. Yes we are hoping remission or at least improvement is in my future, but again again and again there is no guarantee nor is it very likely to definitely happen any time soon. It would help me tremendously if everyone came to acceptance on this that this is my current life. If I can make the best of it I want everyone else to make the best of it too. Because really when all I keep hearing is "when you get better" or whatnot, that makes me feel like everyone has my life on hold until I am better (which may never happen and furthermore I could get worse). So please accept that it is what it is and my life is not on hold. I need to live in the moment I am in with the body I have now. Take me or leave me, but it's me and MG and we come as a pair.
Lastly, I want to reiterate... please value what you have. Things you don't even think twice about, us MG patients can't always do... we can't sit out in the sun/heat, we can't go for a run, we can't shop til we drop because we'll drop before we get into the shop, we can't take a vacation and REALLY get away because we can never leave our biggest burden which is our body. But what we can do is so much that we never previously thought twice about. Just please value what you have, whatever it is. And value WHO you have. Take in the moment and appreciate it for what it is. There is something good to pull from everything. Everything. It just might take a little bit of effort to find it. But when you find it, don't let go. Stay positive. Hold on to the hope. Smile.
Bitter turned sweet.
Thanks for reading :)
So last Friday I developed pain in my leg, around my calf. Well that pain kept persisting. Sunday I also had increased shortness of breath and my heart rate went up to 169 just while walking. Yikes. The highest I've seen it was 150ish. So, you know, that's a bit concerning. I talked to other PE patients and basically they all said get your butt to the ER, better safe than sorry. I struggled with what to do because 1. it was Father's Day and I did not want to do that to my dad, and 2. even though I wanted it to end up being nothing I feared if I went to the ER and it was nothing I'd get written off as anxiety once again. So I stuck it out and tried to completely ignore the symptoms, telling myself if it is still bad Monday maybe I'll check in with the doctor.
Sunday, I also started my new prescription vitamin D- 50,000 IU- huge dosage. I've been taking over the counter 1,000 IU a day but that wasn't working and my level is way too low my doctor said. So I took it and told myself this is going to work and I'll be feeling better in no time (since vitamin D deficiency has been known to actually cause a variety of symptoms). Well in the middle of the night I woke up multiple times in a ton of pain in my abdomen and feeling very very nauseated, forcing myself not to throw up and (excuse this if it's too direct but we all do it) having to urinate way more often that normal. When I went in the bathroom I looked in the mirror and was as pale as a ghost! I almost woke my parents up then but I again tried to ignore it and went back to sleep... until I woke up again and again. I just felt so sick. I asked if anyone else felt sick wondering if it could be from food we ate, but no one was sick and I've had food poisoning before which wasn't the same as this.. I think I was still trying to convince myself all was fine.
So Monday morning the persisting leg pain/shortness of breath/increased heart rate partnered with what seemed to be a reaction to the vitamin D convinced me to get this checked out. I was back and forth about urgent care or ER. One was one way and one was the other so my mom said decide. I think I landed on urgent care but when my mom pulled out of the driveway I said to myself "God, if you want me to go to the ER instead, make it known." Well when we got to the end of the block they had the road completely torn up and we had to reverse all the way back down the street. I took that as my sign and said let's go to the ER.
After getting a room, it was initially one of the most efficient visits to the ER I've ever had. A doctor was in in no time, I didn't even realize they took my blood while talking to the dr, and next thing I knew I was hooked up to a bunch of monitors. You would have thought I told them I was having a heart attack for how quick they responded... I guess PE is nothing to mess with. So they wanted to do what I assumed they would want to do... scan my leg and scan my chest. I really didn't want another chest scan because of the radiation but how could I say no when I'm having the symptoms. So that's what they did. The doctor said if I threw another clot OR my INR was too low they would have to admit me and start the heparin drip. Oh God please no.
I'll let you know the bad news first. I was having a reaction to the vitamin D, which of course happens to this slim number of people that I always happen to land within. My calcium went up which this vitamin D is known to possibly do but what they were more concerned about (sorry again) was how frequently I was using the bathroom and how ridiculously clear it was. The doctor started talking about this could lead to renal failure or something like that. Yikes. Well long story short, I'm told to never take that again (duh). Hoping that my symptoms subside soon because they are still ongoing. After this gets out of my system, we'll try slightly upping my over the counter vitamin D dosage... hopefully something can get figured out to get my vitamin D up without causing me more problems.
Now the good news is my INR was 2.5... pretty much perfect! The leg ultrasound showed no clots and the chest scan showed no clots. Read that again to understand why this was AWESOME news... The chest scan showed NO clots!!!!! Now, there is chance that they didn't show up due to whatever error or whatnot, but assuming everything is correct, then my PE blood clots have dissolved!!! Exactly 2 months out from the PE diagnosis. Awesome awesome awesome awesome! They initially told me it would probably take a couple months for my body to dissolve the clots but for some reason I was still shocked that it actually happened. I still have to be on the warfarin for the full 6 months or however long they finally decide to prevent reclots but this eases my mind a bit knowing that if my INR isn't quite high enough I don't have to be quite as concerned... just have to make sure it doesn't get too high because the bleed risk is still there.
Well the question still stands then what is causing my leg pain that is still 5 days later happening and why am I still getting increased shortness of breath and fast heart rate... but that's not anything for an ER to deal with. My cardiologist appointment should tell me more and it was supposed to be yesterday but the doctor was sick so it had to be rescheduled for July. As far as the leg, I guess I'm just dealing with it for now and hopefully it just goes away on it's own.
And so, other than of course still receiving treatment for PE... my only major current problem (knock on wood and praise God) is MG! That brings me to a little update in that regard. I've had many people tell me I'm looking good, looks like I'm doing better or hope that I'm better, hope that I get well soon... so on and so forth. Here's the thing... I'm not any better MG wise. The reason people might thing that is because what is better about me is my positive attitude. So it might seem like I'm better when in fact I'm the same but responding better. Make sense? Furthermore, there is no getting well soon unfortunately. Yes we are hoping remission or at least improvement is in my future, but again again and again there is no guarantee nor is it very likely to definitely happen any time soon. It would help me tremendously if everyone came to acceptance on this that this is my current life. If I can make the best of it I want everyone else to make the best of it too. Because really when all I keep hearing is "when you get better" or whatnot, that makes me feel like everyone has my life on hold until I am better (which may never happen and furthermore I could get worse). So please accept that it is what it is and my life is not on hold. I need to live in the moment I am in with the body I have now. Take me or leave me, but it's me and MG and we come as a pair.
Lastly, I want to reiterate... please value what you have. Things you don't even think twice about, us MG patients can't always do... we can't sit out in the sun/heat, we can't go for a run, we can't shop til we drop because we'll drop before we get into the shop, we can't take a vacation and REALLY get away because we can never leave our biggest burden which is our body. But what we can do is so much that we never previously thought twice about. Just please value what you have, whatever it is. And value WHO you have. Take in the moment and appreciate it for what it is. There is something good to pull from everything. Everything. It just might take a little bit of effort to find it. But when you find it, don't let go. Stay positive. Hold on to the hope. Smile.
Bitter turned sweet.
Thanks for reading :)
Sunday, June 16, 2013
Thank You
First, Happy Father's Day to all the dads out there. That was somewhat of my inspiration for this post.
Next, I want to say thank you. Thank you to all of YOU. I often receive such kind compliments and words of encouragement... telling me I am your inspiration, that I keep you going, that I'm doing a great job staying positive and making the best of this, that I am a great writer, that I should write a book, that I'm GOING to write a book and be a best seller one day, that my post made you cry because it touched you that much, that I keep you in check reminded of what is important and not to take things for granted... so on and so forth. I just want to say that the glory goes up to God! He is my strength and He is my guide. I praise God for everything I've done and continue to do! So please, thank Him, if my posts have touched you in any way.
With that said, all of your comments really make my heart smile. They lift me up when I'm down and keep me going. So I want to thank all of YOU. Thank you for reading my posts, thank you for sending me messages to stay in touch and encourage me and show me you care, thank you for spreading awareness, thank you for staying in my life even though my life has changed.
Thank you to my fellow MGers, my ladies group from church, acquaintances who just happen to pop into my life and say the right thing at the right time, my friends and my family... especially my parents.
I've always had a hard time saying thank you to my parents. Recently I read something that helped me realize why this might be. When someone does something so incredibly large for you, you feel like you can never repay them, and thus it's hard to accept that gift, and therefore hard to say thank you. Does that make sense? It makes sense to me. I am incredibly grateful for all they have provided for me, taught me and done for me... but saying thank you doesn't come easy. It doesn't come easy because I know I could never even come close to repaying them for all of this.... the biggest "this" is right now. They shouldn't have to take in their grown, married daughter, but they did. They shouldn't have to push me in a wheel chair like I'm a child in a stroller, but they do. They shouldn't have to cook my meals, do my laundry, or drive me everywhere like I'm in high school again, but they do... and they don't complain about it. They do so much that if I said thank you for every single thing I'd be out of breath from talking. It's hard to accept all the help they give me, I really do hate that they do so much for me because I want to do it myself as well as I don't want that burden on them. They should be enjoying retirement... golfing together, dining together, out with their friends... not worrying about what doctor appointment is next for me, planning their schedules to accommodate mine, making sure one person is home if I'm having a bad health day... so on and so forth. I am very thankful.... to my mom and dad THANK YOU.
So if you are reading this and you are a caregiver so to speak, or a parent, I can almost guarantee you are much appreciated. They may not be able to physically or verbally "pay you back" or show you appreciation how they wish they could, but I bet you their heart is full of appreciation. Keep doing what you're doing. None of us MGers would be where we are without you... I mean that in a good way of course :)
I have another topic to discuss but it's kind of unrelated so I'll save it for a later time. Until then, if you could keep me in your prayers I'd appreciate it... I've had pain in an isolated portion of my leg for over 2 days now. Today it seemed like it moved a little, my shortness of breath has increased... it makes me slightly concerned of a possible re-clotting but at the same time I don't want to go to the dr only to be told I'm just having anxiety. So though it's a huge risk, I'm kind of just waiting it out.... please pray that it is nothing.... Thank YOU!!
Next, I want to say thank you. Thank you to all of YOU. I often receive such kind compliments and words of encouragement... telling me I am your inspiration, that I keep you going, that I'm doing a great job staying positive and making the best of this, that I am a great writer, that I should write a book, that I'm GOING to write a book and be a best seller one day, that my post made you cry because it touched you that much, that I keep you in check reminded of what is important and not to take things for granted... so on and so forth. I just want to say that the glory goes up to God! He is my strength and He is my guide. I praise God for everything I've done and continue to do! So please, thank Him, if my posts have touched you in any way.
With that said, all of your comments really make my heart smile. They lift me up when I'm down and keep me going. So I want to thank all of YOU. Thank you for reading my posts, thank you for sending me messages to stay in touch and encourage me and show me you care, thank you for spreading awareness, thank you for staying in my life even though my life has changed.
Thank you to my fellow MGers, my ladies group from church, acquaintances who just happen to pop into my life and say the right thing at the right time, my friends and my family... especially my parents.
I've always had a hard time saying thank you to my parents. Recently I read something that helped me realize why this might be. When someone does something so incredibly large for you, you feel like you can never repay them, and thus it's hard to accept that gift, and therefore hard to say thank you. Does that make sense? It makes sense to me. I am incredibly grateful for all they have provided for me, taught me and done for me... but saying thank you doesn't come easy. It doesn't come easy because I know I could never even come close to repaying them for all of this.... the biggest "this" is right now. They shouldn't have to take in their grown, married daughter, but they did. They shouldn't have to push me in a wheel chair like I'm a child in a stroller, but they do. They shouldn't have to cook my meals, do my laundry, or drive me everywhere like I'm in high school again, but they do... and they don't complain about it. They do so much that if I said thank you for every single thing I'd be out of breath from talking. It's hard to accept all the help they give me, I really do hate that they do so much for me because I want to do it myself as well as I don't want that burden on them. They should be enjoying retirement... golfing together, dining together, out with their friends... not worrying about what doctor appointment is next for me, planning their schedules to accommodate mine, making sure one person is home if I'm having a bad health day... so on and so forth. I am very thankful.... to my mom and dad THANK YOU.
So if you are reading this and you are a caregiver so to speak, or a parent, I can almost guarantee you are much appreciated. They may not be able to physically or verbally "pay you back" or show you appreciation how they wish they could, but I bet you their heart is full of appreciation. Keep doing what you're doing. None of us MGers would be where we are without you... I mean that in a good way of course :)
I have another topic to discuss but it's kind of unrelated so I'll save it for a later time. Until then, if you could keep me in your prayers I'd appreciate it... I've had pain in an isolated portion of my leg for over 2 days now. Today it seemed like it moved a little, my shortness of breath has increased... it makes me slightly concerned of a possible re-clotting but at the same time I don't want to go to the dr only to be told I'm just having anxiety. So though it's a huge risk, I'm kind of just waiting it out.... please pray that it is nothing.... Thank YOU!!
Friday, June 14, 2013
Doesn't matter the question, the answer is always anxiety.
I'm really annoyed by my doctor's visit today. If you don't care to hear it, skip to the bottom for an update. But I'm sharing because there is no point in attempting to spread awareness if you don't bring awareness from every angle. I think today's doctor's visit exemplifies what many MG patients struggle with constantly.
Disclaimer- this doctor is known to be an excellent doctor, I know he is highly intelligent, and I think he's a very nice person in general... BUT today he did what many others have done to me and that really annoys the heck out of me almost to the point of wanting to find a different doctor.
I brought up to the doctor about the sensory overload issue and how it's been happening more and more. Now, fyi, I've already discussed this with other MG patients and MANY of them have this same problem. I don't care if it's not "supposed" to happen to MG. There are a lot of things that aren't supposed to be a part of MG and yet somehow, many many many of us MG patients have the symptoms. How do they make new scientific discoveries every day? Maybe someone needs to start doing some research on this and re-evaluate what MG really consists of or what can happen along with it. Some have received a diagnosis on this sensory overload that I can't remember the exact name of, but others just deal with it because doctor's just don't know or shrug it off... drum roll please.... as having anxiety.
Oh how I love that word, anxiety. NOT. Now, I do have anxiety, and because of that I know the difference of when I'm having anxiety and when I'm not, and at the same time my anxiety has much improved as my faith has become stronger. For over 2 years I got written off as "just having anxiety." Guess what? If I listened to that, I probably still wouldn't have my Myasthenia diagnosis. Guess what else? My breathing trouble after surgery was written off as "just having anxiety." If I listened to that one, I wouldn't have a pulmonary embolism diagnosis... because I wouldn't be here right now. What I'm saying is just because I have anxiety doesn't mean anxiety is the one and only answer to every single thing.... it's not, and I've come to learn my body very well.
So anyways, when I brought up the sensory overload issue, what did my doctor immediately respond? Anxiety. Awesome. I tried to calmly and respectfully explain everything but it was almost like it was in one ear and out the other, his mind was already made up. He then proceeded to call me over to show me something. What did he show me? My list of "allergies" to medications telling me that any doctor that sees that is immediately going to chalk up a patient to anxiety. Excuse me! I have had serious reactions to 2 and only 2 of those medications and made that very clear. The rest of those medications are on there because I gave a doctor a list my neurologist- another DOCTOR- gave to me to make sure all doctors know they CAN bring on MG crisis- a "be cautious with" list. It even says that on the paper. I never said I had allergies to any of those, I never said to enter them in the system, but it was THEIR physician group that did so. Not me. And when I tried to explain this, again, nothing like he didn't even hear me.
What made me more frustrated was the following. He started to tell me I am a young, attractive, intelligent person (no that's not the part that made me frustrated)... and that I need to get out there and meet "people." Excuse me but I am wearing a wedding ring. That's all I'll say about that BUT this led into a short discussion about faith and God and I made it very clear that I stand by my beliefs. When he started arguing me on that, it was like "oh no you didn't!" I kept my cool you know because otherwise I'd be playing hypocrite. But basically he started telling me how I need to live my life... to the point of saying I really shouldn't do anything having to do with MG. What?! I have turned something negative (MG diagnosis) into something positive (promoting awareness of a rare disease)... and you're telling me I shouldn't?? No wonder no one knows about it! I straight out said to him "If I am doing something I enjoy and I am content, (assuming I'm not hurting anyone in any way in the process) what does it matter?"
I then explained how I want to go out and do stuff with friends more often but my Myasthenia prevents that from happening. He argued that it's not preventing me! What?! Do you live with me? Do you feel what I feel inside me? Do you struggle to walk up stairs and dry your hair and do your own laundry? No? Then don't tell me what it is and what it isn't. He then started arguing that my shortness of breath that gets worse the more I do is also anxiety. I explained on the pulmonary function tests my breathing level in regards to MG was 25% and 35% and I was told by the pulmonologist and neurologist that MG is what is making my breathing worse. In one ear and out the other again. Ok so now even facts on paper, medical tests showing percentages, mean nothing? Alrighty then.
I know my body, I know my beliefs, and no one including a doctor is going to change that. God has been my rock through all of this and there is no way, no matter what, anyone will bring me astray from God. And if you're going to argue me on that, I'm just going to defend my faith even moreso. Maybe next time I'll start preaching to him... just kidding I know that's not the right way of going about it.
I knew this was a useless battle to fight, other than standing up for my faith. And so you know what? I didn't even bring up that my ankle has been hurting me. It could (not saying it is!) be a sign of a clot developing. Clots can develop while on blood thinners especially if not in therapeutic range...and well we don't know if I'm in therapeutic range since he decided we don't have to check my INR today but wait another week... even though it's been bouncing all over in and out of therapeutic range. But because every single thing I say is chalked up to anxiety, I didn't even say it. So I'm just hoping I twisted it or something even though I don't remember doing so and that it goes away on its own.
Anyways--- now to the UPDATE part for anyone who is skipping straight to this--
They want to start me on an immune suppressant instead of waiting since my breathing has been bad and my MG worse than before. Before doing so they had to run a bunch of blood tests because this stuff can really damage kidneys, liver, change your blood count, etc. etc. So everything has to be normal before starting it. Well for some reason they also tested my vitamin D level. I know it's been consistently low but I've been taking supplements. Well, it was the lowest it's ever been getting into dangerously low. Low vitamin D can cause many of the symptoms I'm experiencing (but nevermind that's just anxiety... kidding). So, over the counter isn't good enough any more. I need to start on 50,000 IU per week to jump it up... prescription strength. Yikes that's a lot. Hope this works and moreso, hope it gets rid of a number of these ongoing symptoms. Fyi if anyone is unaware, though I like being outside, being in the sun/heat is very very bad for MG so that's not an easy answer for me to help bump it up.
Good news is my ANA which is a blood test that relates to autoimmune diseases... is negative!! I am super happy about this for the reason that as long as I've known it has been positive! In addition, the tons of other blood tests ran besides a few little things here and there, are the most normal they have ever been since my initially getting sick! And so I wonder, did Texas really have something to do with all this!? Or could it be removing my thymus kind of readjusted my body- other than the one thing it was supposed to help- the MG lol. Who knows, but it doesn't matter since good news is good news. Keep it up body, keep improving!! Just start making me feel better too now!
I did get some bad news recently. When I had previously posted that all my blood tests for blood clot disorders (other than autoimmune blood clot disorders that can't be tested til I'm off the blood thinners) were negative... well, I wasn't told that they weren't all in yet. And thus I recently got the last two pending results. I do have a blood clot disorder. So, that could have played into my getting PE as well as it being a complication from surgery. What this means is I am more likely to clot than most people... actually only 1-2% of people have this so once again I'm the lucky rarity. But, thank you God, apparently this disorder is not quite as bad as having other ones and thus it is not required that I be on blood thinners for life! Hallelujah! I will need to take blood thinners for any long car/plane rides or while in the hospital or anything that puts me at more risk of developing a clot... but at least it won't be for life, as far as we know now at least. Thank you God!!
And so we have it, not much has changed. My body continues to not cooperate with me but I take it as a good sign that my blood tests are becoming more and more normal. Hey who knows, one day I could wake up and find myself in remission. That is my prayer for all this.
Thanks for reading. If you're struggling with anything, keep your head up... because even I can... even if it means wearing a neck brace when my muscles are weak like I am right now :)
Disclaimer- this doctor is known to be an excellent doctor, I know he is highly intelligent, and I think he's a very nice person in general... BUT today he did what many others have done to me and that really annoys the heck out of me almost to the point of wanting to find a different doctor.
I brought up to the doctor about the sensory overload issue and how it's been happening more and more. Now, fyi, I've already discussed this with other MG patients and MANY of them have this same problem. I don't care if it's not "supposed" to happen to MG. There are a lot of things that aren't supposed to be a part of MG and yet somehow, many many many of us MG patients have the symptoms. How do they make new scientific discoveries every day? Maybe someone needs to start doing some research on this and re-evaluate what MG really consists of or what can happen along with it. Some have received a diagnosis on this sensory overload that I can't remember the exact name of, but others just deal with it because doctor's just don't know or shrug it off... drum roll please.... as having anxiety.
Oh how I love that word, anxiety. NOT. Now, I do have anxiety, and because of that I know the difference of when I'm having anxiety and when I'm not, and at the same time my anxiety has much improved as my faith has become stronger. For over 2 years I got written off as "just having anxiety." Guess what? If I listened to that, I probably still wouldn't have my Myasthenia diagnosis. Guess what else? My breathing trouble after surgery was written off as "just having anxiety." If I listened to that one, I wouldn't have a pulmonary embolism diagnosis... because I wouldn't be here right now. What I'm saying is just because I have anxiety doesn't mean anxiety is the one and only answer to every single thing.... it's not, and I've come to learn my body very well.
So anyways, when I brought up the sensory overload issue, what did my doctor immediately respond? Anxiety. Awesome. I tried to calmly and respectfully explain everything but it was almost like it was in one ear and out the other, his mind was already made up. He then proceeded to call me over to show me something. What did he show me? My list of "allergies" to medications telling me that any doctor that sees that is immediately going to chalk up a patient to anxiety. Excuse me! I have had serious reactions to 2 and only 2 of those medications and made that very clear. The rest of those medications are on there because I gave a doctor a list my neurologist- another DOCTOR- gave to me to make sure all doctors know they CAN bring on MG crisis- a "be cautious with" list. It even says that on the paper. I never said I had allergies to any of those, I never said to enter them in the system, but it was THEIR physician group that did so. Not me. And when I tried to explain this, again, nothing like he didn't even hear me.
What made me more frustrated was the following. He started to tell me I am a young, attractive, intelligent person (no that's not the part that made me frustrated)... and that I need to get out there and meet "people." Excuse me but I am wearing a wedding ring. That's all I'll say about that BUT this led into a short discussion about faith and God and I made it very clear that I stand by my beliefs. When he started arguing me on that, it was like "oh no you didn't!" I kept my cool you know because otherwise I'd be playing hypocrite. But basically he started telling me how I need to live my life... to the point of saying I really shouldn't do anything having to do with MG. What?! I have turned something negative (MG diagnosis) into something positive (promoting awareness of a rare disease)... and you're telling me I shouldn't?? No wonder no one knows about it! I straight out said to him "If I am doing something I enjoy and I am content, (assuming I'm not hurting anyone in any way in the process) what does it matter?"
I then explained how I want to go out and do stuff with friends more often but my Myasthenia prevents that from happening. He argued that it's not preventing me! What?! Do you live with me? Do you feel what I feel inside me? Do you struggle to walk up stairs and dry your hair and do your own laundry? No? Then don't tell me what it is and what it isn't. He then started arguing that my shortness of breath that gets worse the more I do is also anxiety. I explained on the pulmonary function tests my breathing level in regards to MG was 25% and 35% and I was told by the pulmonologist and neurologist that MG is what is making my breathing worse. In one ear and out the other again. Ok so now even facts on paper, medical tests showing percentages, mean nothing? Alrighty then.
I know my body, I know my beliefs, and no one including a doctor is going to change that. God has been my rock through all of this and there is no way, no matter what, anyone will bring me astray from God. And if you're going to argue me on that, I'm just going to defend my faith even moreso. Maybe next time I'll start preaching to him... just kidding I know that's not the right way of going about it.
I knew this was a useless battle to fight, other than standing up for my faith. And so you know what? I didn't even bring up that my ankle has been hurting me. It could (not saying it is!) be a sign of a clot developing. Clots can develop while on blood thinners especially if not in therapeutic range...and well we don't know if I'm in therapeutic range since he decided we don't have to check my INR today but wait another week... even though it's been bouncing all over in and out of therapeutic range. But because every single thing I say is chalked up to anxiety, I didn't even say it. So I'm just hoping I twisted it or something even though I don't remember doing so and that it goes away on its own.
Anyways--- now to the UPDATE part for anyone who is skipping straight to this--
They want to start me on an immune suppressant instead of waiting since my breathing has been bad and my MG worse than before. Before doing so they had to run a bunch of blood tests because this stuff can really damage kidneys, liver, change your blood count, etc. etc. So everything has to be normal before starting it. Well for some reason they also tested my vitamin D level. I know it's been consistently low but I've been taking supplements. Well, it was the lowest it's ever been getting into dangerously low. Low vitamin D can cause many of the symptoms I'm experiencing (but nevermind that's just anxiety... kidding). So, over the counter isn't good enough any more. I need to start on 50,000 IU per week to jump it up... prescription strength. Yikes that's a lot. Hope this works and moreso, hope it gets rid of a number of these ongoing symptoms. Fyi if anyone is unaware, though I like being outside, being in the sun/heat is very very bad for MG so that's not an easy answer for me to help bump it up.
Good news is my ANA which is a blood test that relates to autoimmune diseases... is negative!! I am super happy about this for the reason that as long as I've known it has been positive! In addition, the tons of other blood tests ran besides a few little things here and there, are the most normal they have ever been since my initially getting sick! And so I wonder, did Texas really have something to do with all this!? Or could it be removing my thymus kind of readjusted my body- other than the one thing it was supposed to help- the MG lol. Who knows, but it doesn't matter since good news is good news. Keep it up body, keep improving!! Just start making me feel better too now!
I did get some bad news recently. When I had previously posted that all my blood tests for blood clot disorders (other than autoimmune blood clot disorders that can't be tested til I'm off the blood thinners) were negative... well, I wasn't told that they weren't all in yet. And thus I recently got the last two pending results. I do have a blood clot disorder. So, that could have played into my getting PE as well as it being a complication from surgery. What this means is I am more likely to clot than most people... actually only 1-2% of people have this so once again I'm the lucky rarity. But, thank you God, apparently this disorder is not quite as bad as having other ones and thus it is not required that I be on blood thinners for life! Hallelujah! I will need to take blood thinners for any long car/plane rides or while in the hospital or anything that puts me at more risk of developing a clot... but at least it won't be for life, as far as we know now at least. Thank you God!!
And so we have it, not much has changed. My body continues to not cooperate with me but I take it as a good sign that my blood tests are becoming more and more normal. Hey who knows, one day I could wake up and find myself in remission. That is my prayer for all this.
Thanks for reading. If you're struggling with anything, keep your head up... because even I can... even if it means wearing a neck brace when my muscles are weak like I am right now :)
Sunday, June 9, 2013
Happy 2 months out from surgery
I wanted to give a little update and didn't know what to title this as "Update" is a bit boring. Then I looked and saw it is exactly 2 months from my surgery, thus that shall me my title. Unfortunately in those 2 months as opposed to getting better and better, I seem to be getting worse and worse. We all knew improvement from thymectomy, IF its going to happen, won't happen for months to years later. I also heard some people get worse right after, before getting any better. But for some reason I kind of ignored that second part. Clearly that's my case... just hoping the better part comes REALLY soon.
My body doesn't like to do anything anymore. Just last night was my cousin's graduation party. I wanted to go, and I rested up this week to prepare for that... though I also rested because after the MG walk Sunday my body got worse. Yesterday, I knew I shouldn't go to the party. I even heard that little voice in my head saying don't go. Even in the car ride on the way there, the voice again saying you shouldn't be going but since you are I'll help you get through it. That voice must be God because I've been hearing it more and more. If I would just listen I'm sure my life would be a lot easier. Discerning what is a message from God and what is my own stubborn will is difficult. Anyways, I went to the party and immediately it was a lot to handle. There were a lot of people there and I haven't seen many of them in years so I had to say hi to everyone and that was exhausting by itself... then came the "you look fine" and so having to explain that too.
So I make my way to the basement, where my immediate family usually hangs out. I was already feeling weak so I just sat, but should say laid there. MG got my face. It was hard to smile, hard to talk, hard to chew, hard to swallow, hard to keep my head up. When people look at me, if you don't know otherwise, it would look like I'm either depressed, totally don't want to be there, lazy or all of the above. But I'm none of those. I'm an MG patient whose body doesn't cooperate.
I hate feeling like my mom is made into a servant but once again that's what it felt like because she was bringing me water and food and making sure I was ok. Well when more and more people started coming down, it became too much. The sensory overload issue was getting out of control. Every sight, sound, motion was blasting at my brain at once. Other MGers get this yet no doctor seems to know about it or even really believe it. I removed myself from the room and once I got in the bathroom alone with the door shut, everything got better. I decided it was time to leave, not even an hour after arriving. <sad face> So I asked my mom to drive me home and heard in the background my dad saying that was probably a good idea. I wanted to believe I could do it, but I guess parties are out of the question for me right now.
So even that occurrence aside, my MG has been worse lately. Because of this there is much talk about starting me on an immune suppressant- a very powerful medication that basically turns off your immune system and has a lot of side effects. The one they want to give me is called Imuran and is used a lot for transplant patients so not to reject the transplant. I've turned this option down for a while now because of all the risks associated with it. And you have to get frequent blood tests with this too because how it is toxic and can harm your kidneys and liver. You think I have to be careful now to not be around sick people- well without an immune system every little cough or sneeze has the risk of landing me in the hospital. My biggest concern with that is while having the pulmonary embolism and being on blood thinners... if I land in the hospital I now have 3 or more complications going on at once... MG, PE and whatever I would land in the hospital for. And any time you get sick with MG it makes the MG much worse. And then the acute treatment for MG, plasmapheresis, is not safe to do with me while on blood thinners. See how this becomes a problem? I wanted to at least wait until off the blood thinners but that is another 4 months or so. Can I do it? Probably, but not without a quality of life decline. It's a tough decision to make here. On top of that, Imuran can take months to start helping. So even if I start it now, I won't see any improvement until a while later, if it does help... again never a guarantee. Just like surgery.
And so, I watch a lot of movies, do a lot of research, attempt to read but my arms get tired holding the book, started a puzzle in which I can pretty much work at it for like 5 minutes at a time. On the way home from the doctor yesterday I said to my mom I hope some day I can go for a walk again and play basketball again. I really miss sports. She asked if I even knew what normal was anymore. I thought about it and my answer is no. I really don't. It's been over 3 years since I first got sick and I can't remember what my body was like before that. All I know is it was a whole heck of a lot easier to do everything and I didn't have to think twice about what I was doing. Again goes back to appreciation/value for what you have while you have it. Because at that moment I thought I need to appreciate/value that it hasn't affected my face like many people... and what happened last night? It affected my face.
Anyways... my INR finally got to 2.0. Need it between 2-3 and 3 weeks ago it was 3.9 so they adjusted my dose and it fell to 1.5, adjusted my dose and again 1.5. Finally we got it. But now they don't want to test again for 2 weeks! That concerns me because I'm on a much higher dose right now and the checks have been weekly. I'd rather go more often than not enough. At least I have a follow up doctor visit in a week so maybe I can talk him into checking or at least talk to him about my concerns.
I know something that would make me better. I really do. And yet I can't have it, at least not right now. I bet those who really know me know that answer. Please pray for it. Thank you!
Tuesday, June 4, 2013
Appreciate
I don't know whether to post this in this blog or in my other blog... but I'll start here and see where it takes me. Lately new movies and my typical "chick flicks" just haven't been doing it for me. One I did really like was Life of Pi. So I asked others for suggestions of good movies and made a list. I also found a few on my own that I thought would be more interesting. The past few days I've been feeling weaker, so I've had a lot of time to watch movies. There were 3 that really stood out to me, and seems like the message behind them were similar... appreciate what you have and value what you have more. There is a more powerful way of saying this but I don't want to give away the movie. If anyone wants to watch these movies they are "Into the Wild", "The Human Experience" and "Heaven's Door."
Before getting my diagnosis and all else that recently happened, I kept talking about how much I was losing... I got laid off from my previous job, money dwindled, moving away I lost closeness with family and friends, the car kept falling apart, things in the apartment were going wrong. I kept saying "what now?" or "what else?" or "I've lost everything." Every time I thought that I would lose more. I lost my health and then I had the biggest loss of all after that. But after that last loss, I gained something so enormous that it would need a space of all those losses to fill. I gained a strong relationship with God. And after that I realized I was focusing on the wrong things. I was paying so very much attention to the negative that my eyes were shut to the positive. I was so focused on things not going as I wanted that I didn't see how much I already had!
Let me give you an example. For a moment, pretend you are on Wife Swap or something of that nature... if you're a man pretend it's Husband Swap... if you're not married, pretend it's Person Swap... just pretend. Now, you are swapping with me. You don't have a job, you are living with your parents, you aren't where you imagined you would be at the age you are at, you have a disability. Many days you are stuck laying in bed or just walking around the house until you sit down to rest and then walk some more. You can't go work, you can't drive somewhere on your own, you can't walk down the block. You have to ask for someone to open something you aren't strong enough to open. You have to ask for someone to carry your own laundry. You have to ask for someone to cook any meal that takes energy. Getting out means going to the doctor. How do you feel? How do you feel when you compare that to your real/current life? Pretty depressed right? Happy that isn't really your life right?
But now imagine this. Again you are on Wife Swap or whatever you want to call it. You have a website you manage and love to create. You get to do things at your convenience and prop your legs up on the couch or bed while doing so. You can wake up naturally, no alarm clock in this life. You get to catch up with friends, watch movies you've been wanting to see, sit outside and just enjoy all that is life. How do you feel? Relaxed and pretty good right? Maybe that would be a nice life?
Guess what. Those two scenarios are the same. You are me in both scenarios... but in the first you are only looking at the negative aspects and in the second you are only looking at the positive aspects. Now in real life it's a mixture of all, but this goes to show it's how you look at it. I can focus on the positive, appreciate and value what I have or I can pass it by and basically be asking for another negative to come my way because I can't be happy with what I've already been given. I think that's a big problem with society. We are a "more" society, always wanting more, always wanting better, always wanting a different situation, a different job, a different/better relationship, a different life. How about instead of wanting more than you have, how about making what you do have into a better story. You do have the ability to do this.
Don't take things and especially not people for granted. Stop asking for a new life and instead make the best of your current life. Maybe we're given difficult times and trying situations not as a barrier to run in the opposite direction but as an obstacle to overcome and learn from so we can look back and say wow, I did that?! I achieved that?! So we can become more well rounded of a person. So we can become stronger. So we can become better. Not obtaining better, but becoming better. Think about that.
We are all blessed with many things. There are people out there who are homeless, or very disabled, and they are happier than a lot of folks who are super rich with expensive cars, big houses and the "perfect little family." How? Because of their perspective on life, because they value people and things. When things and people are taken away, it opens your eyes to what you still have. But we have the ability to open our eyes first. Why let everything be taken away? Look around you. Are you in your home or office? That means you have a home or a job. Do you hear the voices of family members or friends? That means you have people who care, love and support you. Can you walk, breathe on your own, drive yourself? You are physically able! Are you reading this? You are mentally able! Do you have food to eat at every meal? Well guess what? You have a pretty good life if you have all that. Praise God for so many blessings!
Instead of complaining about having to go to work, value that job and that paycheck. Instead of complaining about working out, be happy you have the ability to do so! Instead of complaining about your run down car or apartment, be grateful you are not homeless. Instead of complaining about a friend or family member who "criticizes" you, be happy there is someone who cares about you enough to want to help you improve. Instead of complaining about your weight, be happy you have enough food to eat. Instead of complaining about having a cold or the flu, be happy it is not a chronic illness or disability. Instead of complaining about how much your spouse or children "nag" you, value that you have those relationships, cherish the good times and laugh off the not so good. There is a good and bad way of looking at everything, why look at the bad when you can look at the good? Be happy!
For some reason there is a conversation from 4 years ago that I have always remembered ever so clearly but it's not until recently I understood and valued the meaning of it. I was at a salon getting a trial run of my wedding day hairstyle. We were doing the normal small talk you do with a hairstylist that isn't a regular. When asked about a job I softly and saddened said "I got laid off and haven't been able to find a new job." He shockingly showed so much joy in my comment. He continued on to tell me this isn't a bad thing, this is the best thing that could happen to me... because I can now make of my life whatever I wanted to make of it. I could start fresh. I could go out there and be whomever I wanted to be. Of course, he didn't have to pay the bills without having a job... ha ha... besides the point. There are two ways of looking at everything. He saw my life as a blank canvas whereas I had seen it as an already painted canvas destroyed by someone spilling something and running over it.
So if your life is a canvas (aka a big thing to paint on), what is on it? Are you painting it with the positive or with the negative? Your life is still your life, but what you put on that canvas, your perspective on your life and how much you value what you have, will make all the difference. Paint something beautiful! "See" on that canvas what you aren't already "seeing" in real life.
Life is what you make of it, not what you change of it. I can't change that I have MG, but I can make the best of it!
Monday, June 3, 2013
Who What Where When
Yesterday, I had the joy of participating in the first annual MG Foundation of IL walk. I didn't walk, I got pushed in the wheel chair, but I was still so glad to be able to be there. My parents and brother participated with me.
Almost everyone there seemed to be without wheel chair. I think the instant thought that goes through the head is everyone is doing fine, except you in the wheel chair. Disregard that first thought. The real reason most who attended are not with wheel chair is because of the following.
First, while talking with other MGers prior to the walk I learned many were not attending but their families were on their behalf. So, to begin, the majority of the people at the walk don't even have MG. Second, some of the MGers were helping out in the tent, so they didn't walk it either. Third, some MGers have occular MG which means it only affects their eyes, thus they can walk without trouble. And fourth, and the biggest and I feel most important... even deserving of a new paragraph...
If you attend an MG event or meeting with me, I think the majority of the MGers will be doing fairly ok, probably don't use a wheel chair. Why is this? Well go back to the first reason in which MGers aren't there but their families are. Why aren't they there? Well if I was having a very bad day, or still in the hospital, I wouldn't be there either. Those in worst case scenario are unable to attend the events. Thank God I do have a wheel chair and family to push me. Many people aren't blessed with that privilege and therefore much more confined. It was also 50 degrees yesterday... such crazy weather for June, but cold does affect many MGers just like heat does. It certainly affects me. My muscles were beat after that walk even though I didn't walk it. So every little aspect affects who is going to be at an event or meeting.
It's unfortunate because I think it would be great to always have a wide range of MGers... so that family and friends can see the variance in person to person, minute to minute. But since this is not the case, we must keep an open mind about the situation we are within and remember it is only a glimpse of the big picture.
Opportunity for a call of action here... if anyone has a wheel chair, walker, cane, scooter, etc. sitting around that is not being used, consider donating it to an MGer or another with a disability who would benefit greatly from this. Sometimes I wish I was able to get an electric wheel chair so I could just "go for a walk" to the park or around the block by myself. But, I must remember the wheel chair I do have has been SUCH a blessing. I never once felt embarrassed using it because I have to use it to get out and about. I always said this disease isn't going to stop me and if I have to use a wheel chair I will. Some people might not be at that point of acceptance yet and might not want such help, but there are others out there I know would love such a gift to assist them in leading a more active and "normal" lifestyle. Since MG is rare and not known by many, there is not as much support and causes out there to assist us. Be the blessing you would wish to receive if you were in that situation. Always BE the blessing and I just know you will in return receive a blessing.
Lastly, there is another MG walk which will be put on by the MG Foundation of America, national foundation but local walk in Naperville, IL in Sept. This one will be a fundraiser where you sign up and raise money for the cause. I would love to do this one too. This one allows for teams as opposed to just registration as an individual. I didn't know if anyone would want to do this with me but a friend had asked about such opportunity and it made me think maybe there are others out there who would like to participate with me. So, if anyone would be interested, please just message me and let me know. I'll be making a decision soon to register as an individual or team. It would be awesome if friends, family, old and new would like to join me. And if not, you can still help by making a donation once I start fundraising. As always, anything and everything to help is much appreciated.
Thank you!
Almost everyone there seemed to be without wheel chair. I think the instant thought that goes through the head is everyone is doing fine, except you in the wheel chair. Disregard that first thought. The real reason most who attended are not with wheel chair is because of the following.
First, while talking with other MGers prior to the walk I learned many were not attending but their families were on their behalf. So, to begin, the majority of the people at the walk don't even have MG. Second, some of the MGers were helping out in the tent, so they didn't walk it either. Third, some MGers have occular MG which means it only affects their eyes, thus they can walk without trouble. And fourth, and the biggest and I feel most important... even deserving of a new paragraph...
If you attend an MG event or meeting with me, I think the majority of the MGers will be doing fairly ok, probably don't use a wheel chair. Why is this? Well go back to the first reason in which MGers aren't there but their families are. Why aren't they there? Well if I was having a very bad day, or still in the hospital, I wouldn't be there either. Those in worst case scenario are unable to attend the events. Thank God I do have a wheel chair and family to push me. Many people aren't blessed with that privilege and therefore much more confined. It was also 50 degrees yesterday... such crazy weather for June, but cold does affect many MGers just like heat does. It certainly affects me. My muscles were beat after that walk even though I didn't walk it. So every little aspect affects who is going to be at an event or meeting.
It's unfortunate because I think it would be great to always have a wide range of MGers... so that family and friends can see the variance in person to person, minute to minute. But since this is not the case, we must keep an open mind about the situation we are within and remember it is only a glimpse of the big picture.
Opportunity for a call of action here... if anyone has a wheel chair, walker, cane, scooter, etc. sitting around that is not being used, consider donating it to an MGer or another with a disability who would benefit greatly from this. Sometimes I wish I was able to get an electric wheel chair so I could just "go for a walk" to the park or around the block by myself. But, I must remember the wheel chair I do have has been SUCH a blessing. I never once felt embarrassed using it because I have to use it to get out and about. I always said this disease isn't going to stop me and if I have to use a wheel chair I will. Some people might not be at that point of acceptance yet and might not want such help, but there are others out there I know would love such a gift to assist them in leading a more active and "normal" lifestyle. Since MG is rare and not known by many, there is not as much support and causes out there to assist us. Be the blessing you would wish to receive if you were in that situation. Always BE the blessing and I just know you will in return receive a blessing.
Lastly, there is another MG walk which will be put on by the MG Foundation of America, national foundation but local walk in Naperville, IL in Sept. This one will be a fundraiser where you sign up and raise money for the cause. I would love to do this one too. This one allows for teams as opposed to just registration as an individual. I didn't know if anyone would want to do this with me but a friend had asked about such opportunity and it made me think maybe there are others out there who would like to participate with me. So, if anyone would be interested, please just message me and let me know. I'll be making a decision soon to register as an individual or team. It would be awesome if friends, family, old and new would like to join me. And if not, you can still help by making a donation once I start fundraising. As always, anything and everything to help is much appreciated.
Thank you!
Saturday, June 1, 2013
Truth
Happy June! June is Myasthenia Gravis awareness month. I would love if you could all pass this website on to friends and family to promote awareness. If they have no idea what MG is all the better that you pass it on! Hey, one day not too long ago I had no idea what MG was. I went over 2 years un/mis-diagnosed. Think about how we can shorten the time frame of un/mis-diagnosis if more people are aware this exists and what the symptoms are.
I am involved in several Myasthenia groups... a community of MG patients I can relate to and discuss concerns together. It's hard when so many of my own family members and friends just don't "get it." I appreciate everyone who reads up on it to try to understand. That REALLY does help. But, there's still something to be said for a group of people in the same situation. So anyways, within these groups lately there has been much more discussion about how much incorrect information is out there about MG- on websites and even from healthcare professionals! We are all concerned and upset about this because it gives all of you- our family and friends- the wrong idea about MG, and that makes it all the much harder for us. So for the month of June, a lot of us are trying to promote awareness ourselves as we believe this disease can best be learned by the patient him/herself.
One thing you will often hear or read is how MG patients can live a "fairly normal life" or worse yet, a "normal life." Really? Can we? No. Yes there will be the exception to the rule of those few MG patients who still work full time or can exercise. But even they do still have their moments/days that are no where near "normal." Those patients aside, most of us agree that we are very far from living a normal life. Our life is completely altered from what it used to be. Most of us cannot work, and those who do are usually part time. This is because MG can hit at any moment and the majority of those moments are not well enough to hold a steady full time job. A lot of us went from being very active to not at all. I LOVED sports- basketball, softball, dance so on and so forth... now just to throw one ball to the basket would exhaust me, if I could even get it that high. We can't go out and party like we used to, we have to cancel or cut activities and outtings short. We are far from living a normal life.
It was said by a patient who asked their doctor why doctors and websites say this that the doctor responded that it is to keep patients and families hopeful. Hopeful or not, a lie is a lie. I'd rather know the truth and learn how to adapt. I think this has a big part in others acceptance of my disease. So often I am asked "are you doing better yet?" or "did the surgery work?" or "you'll be fine" or "when you are better." Guess what, we can hope, but the facts are the facts. All of these comments and questions just make me think that person is either not educated on my illness or in denial of accepting this is my new life. Neither is helpful to me and they tend to remind me that the answer is usually no I'm not better, I'm not in remission, I'm unsure if surgery did any good... I don't want to constantly be reminded of the negative I want to live in the positive. The positive is I'm here and I'm doing the best I can! I started 2 blogs, opened an online store and have another plan in the works that I am even more excited about!
Another thing you will often hear and read is that it is not fatal or rarely fatal. Well, being in these groups at least once a week maybe more, I hear of another who has lost someone to this battle. It has been listed as the cause of death for many. I don't mean to get gloomy here but if I'm promoting awareness people need to be fully aware and informed properly. That's why it's SO important to limit my stress, stay out of the heat, not overdo it, take many rest breaks, space things out, avoid people who are sick... basically live in a bubble. Just kidding. Had to lighten it up a bit right? Really though if you want to do one thing to help me stay out of the hospital don't bring on a stressful situation with me or around me. That is THE biggest help personally I think.
Though there are many out there, I'll name one more... the impression that treatments make everything better. This is so far from the truth it's astonishing. Even if a treatment or medication works for someone that in no way means that person can live as if they don't have this disease. All it means is that it lessens their symptoms. That may mean instead of being in a wheel chair constantly they use it only long distance, or instead of not working at all they can volunteer a few hours a month. Again, yes there are those few that will go into remission. It may or may not be caused or helped by the medication or treatment. But there are still many of us who are far from remission and have never seen remission. Treatment does not at all mean cure. Even with remission it is not a definite permanent thing. Many people who go into remission one day, unfortunately, come out of remission and MG is really bad again. The key is that a treatment is a treatment- it is temporary and a chance at helping.
Treatment for me hasn't been very successful. I can only tolerate a low dose of Mestinon because of severe side effects. This means it doesn't help my MG very much. Prednisone rarely makes MG people worse but can. I was one of the ones it made worse, along with absolutely horrible side effects, so I can't use that treatment at all. IVIG made me worse also. Plasmapheresis seemed to have a delayed effect at helping me but all that did was get me through surgery (but thank God that it did). I currently can't get normal plasmapheresis through a central line because of my blood thinners. They would have to try doing it with lines in both arms- which they rarely do and more rarely on smaller people. None of these are very long lasting. They say IVIG and Plasmapheresis can last 3-6 months. Any patient I talk to gets these treatments much more frequently than that. So my next option is immune suppressant drugs, which have extremely serious side effects including the increased risk of developing cancer. And yes there are people who have developed cancer after being on these drugs. But we decided not to start me on that yet since I got the pulmonary embolisms and am on blood thinners. Since I tend to react poorly to so many treatments and medications we didn't want to add another risk in there on top of what I'm dealing with. Doctors and medical websites won't often tell you the bad stuff. I think its so patients and families don't get scared. But personally I'd like to be properly informed so that's what I'm providing to you too.
Lastly, every MG patient is different- very very different. Some patents may have ocular MG so it only affects their eyes, others have generalized MG like me so it affects the entire body. Some patients respond well to one treatment and not another. Some patients have trouble talking, others trouble swallowing, others double vision and can't drive, others in a wheel chair... on and on and on. Just remember what one MG patient is going through isn't exactly the same as the next. But what we are all the same in is fighting this horrible yet rare disease. We wear our teal with a smile because we're fighting this battle with a smile. Teal is the color of MG, and just so happens to be my favorite color. So if you do nothing else to promote awareness this month, I'll end in asking that everyone dedicate at least one day in June and wear something teal. If anyone asks you, and better yet even if they don't, let them know what you are wearing that color for and direct them to my website or another good source of information.
Thanks for reading! Thanks for helping spread awareness! If you'd like to take it a step further, please visit my shop and purchase an item and wear it with a smile www.cafepress.com/fightmg Thank you!
I am involved in several Myasthenia groups... a community of MG patients I can relate to and discuss concerns together. It's hard when so many of my own family members and friends just don't "get it." I appreciate everyone who reads up on it to try to understand. That REALLY does help. But, there's still something to be said for a group of people in the same situation. So anyways, within these groups lately there has been much more discussion about how much incorrect information is out there about MG- on websites and even from healthcare professionals! We are all concerned and upset about this because it gives all of you- our family and friends- the wrong idea about MG, and that makes it all the much harder for us. So for the month of June, a lot of us are trying to promote awareness ourselves as we believe this disease can best be learned by the patient him/herself.
One thing you will often hear or read is how MG patients can live a "fairly normal life" or worse yet, a "normal life." Really? Can we? No. Yes there will be the exception to the rule of those few MG patients who still work full time or can exercise. But even they do still have their moments/days that are no where near "normal." Those patients aside, most of us agree that we are very far from living a normal life. Our life is completely altered from what it used to be. Most of us cannot work, and those who do are usually part time. This is because MG can hit at any moment and the majority of those moments are not well enough to hold a steady full time job. A lot of us went from being very active to not at all. I LOVED sports- basketball, softball, dance so on and so forth... now just to throw one ball to the basket would exhaust me, if I could even get it that high. We can't go out and party like we used to, we have to cancel or cut activities and outtings short. We are far from living a normal life.
It was said by a patient who asked their doctor why doctors and websites say this that the doctor responded that it is to keep patients and families hopeful. Hopeful or not, a lie is a lie. I'd rather know the truth and learn how to adapt. I think this has a big part in others acceptance of my disease. So often I am asked "are you doing better yet?" or "did the surgery work?" or "you'll be fine" or "when you are better." Guess what, we can hope, but the facts are the facts. All of these comments and questions just make me think that person is either not educated on my illness or in denial of accepting this is my new life. Neither is helpful to me and they tend to remind me that the answer is usually no I'm not better, I'm not in remission, I'm unsure if surgery did any good... I don't want to constantly be reminded of the negative I want to live in the positive. The positive is I'm here and I'm doing the best I can! I started 2 blogs, opened an online store and have another plan in the works that I am even more excited about!
Another thing you will often hear and read is that it is not fatal or rarely fatal. Well, being in these groups at least once a week maybe more, I hear of another who has lost someone to this battle. It has been listed as the cause of death for many. I don't mean to get gloomy here but if I'm promoting awareness people need to be fully aware and informed properly. That's why it's SO important to limit my stress, stay out of the heat, not overdo it, take many rest breaks, space things out, avoid people who are sick... basically live in a bubble. Just kidding. Had to lighten it up a bit right? Really though if you want to do one thing to help me stay out of the hospital don't bring on a stressful situation with me or around me. That is THE biggest help personally I think.
Though there are many out there, I'll name one more... the impression that treatments make everything better. This is so far from the truth it's astonishing. Even if a treatment or medication works for someone that in no way means that person can live as if they don't have this disease. All it means is that it lessens their symptoms. That may mean instead of being in a wheel chair constantly they use it only long distance, or instead of not working at all they can volunteer a few hours a month. Again, yes there are those few that will go into remission. It may or may not be caused or helped by the medication or treatment. But there are still many of us who are far from remission and have never seen remission. Treatment does not at all mean cure. Even with remission it is not a definite permanent thing. Many people who go into remission one day, unfortunately, come out of remission and MG is really bad again. The key is that a treatment is a treatment- it is temporary and a chance at helping.
Treatment for me hasn't been very successful. I can only tolerate a low dose of Mestinon because of severe side effects. This means it doesn't help my MG very much. Prednisone rarely makes MG people worse but can. I was one of the ones it made worse, along with absolutely horrible side effects, so I can't use that treatment at all. IVIG made me worse also. Plasmapheresis seemed to have a delayed effect at helping me but all that did was get me through surgery (but thank God that it did). I currently can't get normal plasmapheresis through a central line because of my blood thinners. They would have to try doing it with lines in both arms- which they rarely do and more rarely on smaller people. None of these are very long lasting. They say IVIG and Plasmapheresis can last 3-6 months. Any patient I talk to gets these treatments much more frequently than that. So my next option is immune suppressant drugs, which have extremely serious side effects including the increased risk of developing cancer. And yes there are people who have developed cancer after being on these drugs. But we decided not to start me on that yet since I got the pulmonary embolisms and am on blood thinners. Since I tend to react poorly to so many treatments and medications we didn't want to add another risk in there on top of what I'm dealing with. Doctors and medical websites won't often tell you the bad stuff. I think its so patients and families don't get scared. But personally I'd like to be properly informed so that's what I'm providing to you too.
Lastly, every MG patient is different- very very different. Some patents may have ocular MG so it only affects their eyes, others have generalized MG like me so it affects the entire body. Some patients respond well to one treatment and not another. Some patients have trouble talking, others trouble swallowing, others double vision and can't drive, others in a wheel chair... on and on and on. Just remember what one MG patient is going through isn't exactly the same as the next. But what we are all the same in is fighting this horrible yet rare disease. We wear our teal with a smile because we're fighting this battle with a smile. Teal is the color of MG, and just so happens to be my favorite color. So if you do nothing else to promote awareness this month, I'll end in asking that everyone dedicate at least one day in June and wear something teal. If anyone asks you, and better yet even if they don't, let them know what you are wearing that color for and direct them to my website or another good source of information.
Thanks for reading! Thanks for helping spread awareness! If you'd like to take it a step further, please visit my shop and purchase an item and wear it with a smile www.cafepress.com/fightmg Thank you!
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