Side Effects

Today I want to talk about side effects. Many people get handed a medication, don't read through the papers that come with it, and sort of shrug off the possibility of anything bad happening... yeah right? Me? Nah.

For me, and for many people with chronic illnesses, especially specifically regarding MG, that is different.

I'm just going to mention some of the many medications I have been given and the side effects they caused me. Some, because no joke within 9 months of misdiagnoses, I was placed on 50 different medications. I kept track. So I'll only talk about the most serious side effects I encountered.

I hope this brings awareness that the word "medicine" doesn't always mean "helpful" or "a fix". In some instances, the side effects could be worse than what it's being used to treat. In some instances, side effects could mean the cause of a life long problem to deal with. And in some instances, yes rare but possible nonetheless, side effects could mean death. If not for yourself, read this to understand for another- another who is dealing with many medications day in and day out and all the side effects that come along with them in addition to the illnesses they fight.

Disclaimer- I am not a medical professional of any sort. I am merely discussing my own situation and what could be possible for others. Do not use this as medical advice and always talk to your physician before starting or stopping any treatment.

• Levaquin- This is an antibiotic I was given to treat the pneumonia that started this whole thing back in 2010. After just one pill, ONE pill, I stiffened up like the tin man. Nearly every joint in my body was in pain, tendons popping audibly and felt in the inside, difficult to move. This medication has a black box warning for possible tendon rupture. Since this medication, this ONE pill, I now have joint and tendon problems that flair up whenever they want and I have to take flax seed for inflammation. I occasionally have to wear support braces on my knees because of this. Another side effect was weakness in which it was hard to walk or really do anything else. That part is most likely related to the MG. Could it have brought on the MG? Possibly. Anything in the quinolone family needs to be given, if at all, only very cautiously to anyone with MG. It could bring on crisis.

• Bactrim- This is another antibiotic I was given in 2012 for an infection. This could have been what forever changed my life. Taking this medication, slowly my body felt as if it was shutting off. At first we thought maybe this is it killing the infection. My heart rate, typically high (undiagnosed POTS), went very low. However then my breathing started to be affected. Every breath became a struggle. Vomiting, chills. My temperature, again typically high 99+, went low... 96. The biggest concern, my severe weakness. Weakness as in I couldn't walk. I had to be carried, down the stairs, to the car, into the ER. All of these things happening to me were listed as severe side effects and yet the ER wrote me off and I had to later be admitted to a different hospital for 2 weeks. Since this medication I've never been able to get rid of the wheel chair. If I didn't already have MG, Bactrim caused me to have it. This is another medication that could bring on an MG crisis, anything in the sulfa drug family. 

• Beta Blockers- I was given this in attempt to treat POTS just last year. The purpose of this medication is to regulate your heart rate. This messed with me in a completely different way. I had an extreme surge of energy- I'm talking like I had 20+ cups of coffee all at once, maybe even more. I was talking non-stop, pacing non-stop. After being weak for so long, you'd think that would be nice. No, it was far from. It also caused this insane brain fog. I couldn't remember what I was doing, what I was saying, how to do basic things. It like took everything that went to my brain and sent it to my body... but then my body was on super high speed... like I went manic or something. It also gave me irregular heart beats and caused more breathing trouble. The breathing scared me the most probably, because yet again beta blockers are something to be extremely cautious with in anyone with MG, again could bring on crisis.

• Midodrine- Another medication I was given to help POTS, specifically this one is supposed to help prevent the blood pooling in your legs and thus the goal to stand upright longer, less dizziness/lightheadedness, etc. Typical side effects with this include weird crawling sensations on your body. Some people can't tolerate it and stop just because of that. For me it caused severe weakness, again listed as a serious side effect. I'm talking worse than MG weakness as far as my legs are concerned. One leg would stop working. I literally had to drag it in order to move myself to a chair. I thought I was just going to topple over. At least with MG you can rest and it usually improves, or you typically have some sort of warning to stop before it gets to that point. It was as if someone took my foot and glued it to the floor. Insane.

• Prednisone- This is a steroid that was given to me twice before, maybe three times- once for MG and once for God only knows what while they were misdiagnosing me along the way. All I know is I will never ever ever ever take this medication again. I'll start with what would probably be the most minor side effect- it makes you eat like crazy- eat eat eat that's all I would do. Some people gain a TON of weight taking this, and there is nothing you can do about it. Fortunately the weight came off for me once I stopped it each time. Now more seriously, this stuff messes with you mentally in a very severe way. I had tons of horrible panic attacks, crying spells, anger fits, everything. My mood was out of control. I will never ever take this again. In addition, it's used for so many MG patients yet it has the possibility of making MG worse. I was again the rarity, it made my MG worse. 

• Veramyst- This is a steroid nasal spray. I was put on this several times as no one would listen to me. It caused drug induced acute glaucoma. Fortunately since it was acute, not chronic like my other illnesses, it went away a while after stopping Veramyst and hasn't come back.  

• IVIG- This is an infusion treatment used for MG. It's supposed to help decrease symptoms and many people get these infusions regularly either in a hospital or at home from a nurse. I had this in 2012 after a near MG crisis to try to bring me out of it. It caused a severe headache and increased breathing trouble. It felt so bad I would never want to do IVIG ever again. But some people have it worse, getting drug induced meningitis. It did help my eyes in regards to MG, very much so, but to me it's not worth those side effects for that one portion that it helped. There is also a risk of blood clots with IVIG and since I'm already at greater risk for blood clots for 2 other reasons, I don't think I could ever do this again anyways.

Again, this is only a few of the many many medications with many side effects I have had. There are much more serious side effects out there that are life long side effects. Way too often doctors are too quick to throw medication at you... without fully understanding your individual case, without understanding the risks, without your input. Remember it is YOUR body and those side effects are going to happen to you, not the doctor. I hope they don't but I also hope this makes you aware. 

Medications and treatments can be very helpful, if/when they are needed and with the right person. Some people have bodies like my own that resist medication. My body hates medication. I seem to always get the bad side effects. When your side effects are worse than your symptoms, it's time to say enough is enough. 

At this very moment I am on 0 prescription medication, only zofran as needed. Some might say that's amazing. Some might say it's stupid. Some might say no wonder you haven't improved. I'm not on 0 medication because I'm well enough to be, I'm on 0 medication because nothing works for me or it causes serious side effects that give me no choice but to stop. I'm on 0 medication because I've found supplements as alternative treatment. I'm on 0 medication because I said enough is enough.

Sometimes medication is the answer, but sometimes it's not. Always read the papers that come with the medication and make sure there are no interactions or risks with your other medications or illnesses (such as MG). Please be careful about what you put into your body. You only have one; take care of it the best you can. Good health is such a blessing, one that I took for granted until I realized how quickly and easily it could be taken away.

Crash

This morning upon waking up I felt as if I could barely breathe. My lungs felt collapsed. My body felt so weak as if oxygen wasn't reaching it how it needed to. I continued to lay there focusing on nothing else but getting a breath in and getting a breath out. Slowing filling my lungs more and more. Eventually with enough energy I slid over in bed to my nightstand and checked my pulse ox. 94% not good.

Typically when I wake up I go downstairs to eat and get my coffee then come back up and rest some more before I get ready for the day. For some reason last night I placed a mojo bar on my nightstand for the morning... as if I subconsciously knew I would need something prior to having the strength to walk downstairs. I ate it, I drank my water, but none of it was helping as it should. But I had a follow up with my primary doctor I had to go to. I got ready and my mom drove me over. His office is only 5 minutes away- I could drive that. But again, apparently there was a hidden reason that neither my mom nor I thought twice about her driving me.

Upon arrival my blood pressure was taken- 84/60. Not cool. See, I knew something was off. Shortly after the doctor and I started to talk and then I cut him off stating "I feel like I'm going to faint. I'm going to faint... right now." Thank God, somehow, I didn't. They laid me down, gave me water, something with salt in it and a kit kat for sugar. We got my bp up to almost 100/60 and I had enough strength to walk out to the waiting room. There I downed a G2 as my mom went to pull up the car.

5 minute drive home and crash again. My vision cloudy/hazy, serious brain fog, all over body weakness at an extreme level. I'm talking let's wait to go to the bathroom because I don't have enough energy to walk the few steps to get there. Downed a coconut water, drank more water, ate some chips for salt. Laid down flat. Do nothing. Still not working. My mom and I had planned on going to a store prior to any of this happening and she walked in and said  "Well maybe we can go later if you are feeling better." A store? That was no where in my mind now. What's on my mind now? Surviving. Merely surviving, and hopefully without a trip to the ER.

Licorice... let's try licorice. Took my normal chewable tablet, then added another, then ate some actual licorice candies. Yes I try to avoid sugar but not in times like these, you do what you've got to do. Oh my I feel better! My mom walked in again and her eyes nearly bulged out of her head. I don't think she was expecting me to be sitting up typing on the computer. "Licorice" I said "licorice"... it's got to be adrenal. "Well let's not go playing doctor" she replies. "I've diagnosed almost everything else so far." She talked something about that imaginary medical degree I have as she walked out.

My functional medicine doctor does think I have an adrenal problem, which is why I'm on licorice tablets. But insurance won't cover his testing. And no other doctor feels this is any sort of problem. Story of my life... and everyone else's with chronic illness. One thing after the next and no one can figure it out or wants to. Get written off, get misdiagnosed, get tossed aside as we continue to fight every day hidden beneath the body that attacks its own insides. If it's an adrenal problem, I could hit adrenal crisis which is life threatening. That's a little concerning, right?

Next time she popped in, crash. Laying down unable to function again. Ugghh! What. the. heck. Meat- a burger- protein. Well, that perked me up enough to get back on here and type but I'm really weak and can't really do anything besides type. However, I am sooo thankful for the ability to type, so so thankful. Thank you God for arms and hands and fingers that work when nothing else seems to. Thank you God for my eyes strong enough to see what I'm typing. Thank you God for my brain fog subsiding just long enough to get a post out there.

This doesn't at all seem like MG. My eyes are wide open. When I'm MG weak my eyes are nearly closed. When I'm MG weak, the weakness gets worse upon use of whatever muscle, not constant or wavering all over I feel like I'm dying weakness. But it also doesn't seem like POTS. Partially it does- my temperature was 96 at the doctor, that's odd. My heart rate is low- with POTS its typically high but it can go low. My bp obviously was really low. But, normally salt brings me back, or laying flat brings me back. This time- licorice. That's an adrenal thing, I'm telling you.

Anyways I'm getting off topic here. Actually I don't even know what the main topic is. Brain fog. There's something going on, I'm not exactly sure what it is, but it's attacking right now, at a very inconvenient time. Isn't that always how it is?

But here's a thought I had suddenly moments ago like a light bulb went off in my head. Every time I think I'm doing better, I quickly decline, as if my body is saying "No! You will not be allowed to live a normal life!" and I say "uggh, fine, body. You win again." But you know what happens every time I decline... even when in the hospital.. as soon as I am at all able? I write. And so that light bulb that went off in my head... it was basically saying that when I'm feeling a bit better, maybe I don't write as much about illness. When I am feeling really weak/bad, I write on my illness, on what's happening to me. So I thought, could the purpose of this be to get the word out there? To keep me writing? To help others?

Furthermore, the thought hit me- could this all be happening to show that no matter how many times I get knocked down I keep getting back up? To show how powerful God is, that in my own strength there is no way that I could get through this, but with Him I can do ALL things?? I thought if only I help a single person though this, it's worth it. If only one person has been led to Christ, it is absolutely completely worth every single thing I've gone through. So if this is my reminder to write, I heard it loud and clear. I will keep writing and I will keep writing about MG and POTS and any other health problem that comes my way. But of course I hope and pray that those health problems go away. I promise I will keep writing anyways. I promise to strive to live whatever God's will is for me, with or without illness.

So, please, if you will, join me in praying that all illness is cast out of my body in the name of Jesus! Be gone sickness, pain, suffering, worry, weakness. Lord, fill me with Your presence, let it be Your strength that gets me through this. In Jesus' name. Amen!

Thank you all. And, most of all, thank you God!

Attitude

A situation arose in which various scenarios could have played out from it. I played the waiting game on it for some time. Last night I received some good news.

I was overjoyed, so excited, thrilled about the news. Receiving that one bit of news made every light shine brighter, made every problem seem smaller, made the world seem blissful.

If I didn't encounter that problem, I would have never received this good news that resolved the problem. And in which case, I would never have felt how wonderful I did.

So think about that...

Something negative, or possibly negative, had to happen in order for the positive to come forth from it. You really can't have one without the other. We always want good good good, fun, excitement, happiness, etc. Of course we don't want the bad. But if we never experienced anything bad, how could we possibly feel the benefit of anything good? We wouldn't even know what good was. Everything would just be eh, one flat line.

I thought to myself, after something so good, something not so good is bound to happen. It just is. That's what life is about, the ups and downs. Well, today I woke up with an alarm, fasting, and went to the doctor's office to get my blood drawn. Now keep in mind, if I don't wake up naturally, my body is completely thrown off for the whole day. Fasting is difficult for me for the same reasons. And of course driving to a doctor first thing isn't exactly my preference of a Friday morning. So I arrived, of course early, and waited til they opened the office. I waited some more. Then the nurse came over and informed me the test would not be covered by insurance, after I had already been told that it would. I could choose to pay $800 to get it done out of pocket, but no thank you!

I could have gotten very angry that I had to wake up early, fast and go into the doctor for absolutely no reason. Granted, I wasn't exactly happy about such a thing. But instead I decided to keep on smiling. I looked at the positive rather than the negative. Thankfully, they found out insurance wouldn't cover the test before they submit it and I got hit with a huge bill. Thankfully, they found out insurance wouldn't cover the test before they drew my blood or else I would have been even weaker for no reason. Losing blood is very hard on POTS patients. And because of how this morning played out, I was able to see the sun rise, something I really never get to see. I got some coffee from Starbucks, something I rarely ever do. And I decided to force myself to stay awake instead of going back to sleep to try to get back on a better sleep schedule. I've been waking up way too late and going to sleep way too late. And my day is going to be so much better because I chose to keep on smiling regardless of the circumstances presented to me.

There are going to be ups and downs. There are going to be good times and bad times. That is life. We don't have the power to control what comes our way, but we do have the power to keep a good attitude about it. And even when we get down about something, remember that without feeling down, you wouldn't feel the joy that comes from an opposite experience.

So add those hills, add those mountains. Even if you feel that last ounce of energy drip off from you, keep on keeping on. Smile when you feel you have no reason to because the reason will come when you least expect it. That storm will end with a beautiful rainbow. Enjoy it while it lasts, and remember there will always be another rainbow... so smile through that storm.

Thank you so much to everyone who has been praying with me. Please keep praying... for God's will to be done. God bless.

The Grey Area

In a discussion on one of the facebook MG groups, a thought hit me, and then I thought ooh this is a good writing topic!

The grey area.

Imagine this:
You are inside a store and you see someone being pushed in a wheel chair. You think to yourself hmm... maybe they broke their leg, maybe they are paralyzed from the waist down, maybe they have MS and can't walk. Or you are less curious and think nothing and carry about your shopping.

And then you meet again by the fitting room. As you walk up to the fitting room you see this person in the wheel chair. Perhaps you think good thing they have an accessible room big enough, or you think how is that going to work, or you get impatient thinking someone in a wheel chair is going to take longer and make your wait longer.

And then what? Right before your very eyes that person in the wheel chair gets up... on their own... and walks. She walks right into a regular room. Now you are bewildered and so you kind of keep watching their feet under the door... up, down, up, down... as she tries on two pairs of pants. Everything you thought you knew about this stranger in the wheel chair goes out the window as she opens the door, walks out of the fitting room, hands back a few items, walks back to the wheel chair, and plops on down.

What just happened?

Were you imagining that? Is this a dream? Was someone just cured right before your eyes. Are you on some hidden camera show to catch your reaction? Is there some mysterious illness you don't know about? Is this person a fake???? That ends your thoughts. This person must be a fake. She must be lazy and demand her mother push her around in a wheel chair so she doesn't have to walk. She's probably one of those people that makes everyone do everything for her. Oh no now I know what it is, you think, she loves attention. She just wants to fake it in a wheel chair because people in wheel chairs get attention. Clearly she has nothing wrong with her. She was just walking. Fake.

That is utterly incorrect. This, my friends, is MG. Myasthenia Gravis. You can't say it, can't spell it and certainly have no clue what it means. So I'll help you out.

It's the grey area.

MG isn't walk or don't walk. MG isn't wheel chair or no wheel chair. MG isn't black or white. It's far from. You never know what to expect with MG. Some days we need to use a wheel chair or maybe walker, other days we don't. Some days we don't have the strength to go anywhere even in a wheel chair. Other days we will use the wheel chair for long distance and walk any short distance. I know it's confusing for your eyes but this is MG. We walk, we sit, we stand, we sit, we lay down, we sit, we walk, we stand. And we do this over and over and over depending on how badly MG is affecting us on any given day or moment.

(Edit thanks to an MG friend who brought up a very good point--) Furthermore, MG doesn't "just" affect our legs. It doesn't "just" affect any part of us if we have generalized MG. It affects legs, arms, trunk/core, face, swallowing, breathing, vision, any voluntary muscle in our body. So for this reason, no we cannot push ourselves in the wheel chair. For this reason, using a walker isn't always a help. It's not just our legs going weak that we need to stabilize or rest, it's our entire body arms included. So again, in having someone push us, we aren't being lazy... we are saving ourselves a trip to the hospital from overusing our arms in which the MG could progress to the diaphragm and paralyze our breathing.

This wheel chair acts as an extension of ourselves. It allows us to get out where or when we otherwise couldn't. It allows us to conserve our muscles for things we have to do as opposed to things we want to do because we can't do it all. We aren't being lazy. We aren't faking it. We aren't miraculously cured right before your eyes (though that would be amazing!). We have MG.

So if you ever see someone in a wheel chair start walking, or someone you think looks fine park in a handicap spot, or someone look drunk who you thought didn't drink... think about the possibility of MG or another rare disease you may know nothing about. People come up to us and accuse us of many different things or question us in an accusing manner or give us dirty looks. I have no idea when ridiculing or judging a stranger, or anyone for that matter, became an acceptable behavior, but it shouldn't be. Instead just give them the benefit of the doubt. Personally, if you're going to do anything, I would much rather someone ask me why that just happened with a non-judgmental ear wanting to learn, as opposed to their mind running wild with incorrect thoughts and insulting stares.

MG is not black or white. It's every shade of grey, and we never know which one.

Awareness is key. Please pass this on. Thank you.