POTS treatment

I have an update and I need to just type this out before I get distracted by anything else. Sooo many things to do and all of them take me uber long because of so many rest breaks. One of these days I'll make it through my to-do list. Anyways, back to the blog.

Last I mentioned about the beta blocker and the crazy side effects. My doctor said hold off for two days then try again. After realizing "try again" would land shortly before my parents were taking my brother back to school and I was either going with thus far away from the hospital or staying here thus on my own with no one to get me to a hospital if needed- we decided to wait longer. That brought me to my follow up appointment with Dr. Awesome (yes that is how I refer to him now) yesterday. 

Quickest appointment ever and yet one of the most effective. Crazy what a difference a good doctor makes. I asked him about more natural options if not 'instead' of prescription then at least 'in addition to.' He was very receptive to that which I was very happy about. So without boring you with the details of our conversation, the result is as follows:

1. (the non-natural one) We are going to be trying a new medication and hold off on the beta blocker. This new med is to help with the pooling of blood in my legs and to raise my blood pressure. The hope is that in doing so my heartrate stabilizes. If that happens I will not need the beta blocker. If it doesn't or if I can't tolerate this med, it's back to trying a beta blocker.
2. Compression stockings woohoo! Hey you've got to do what you've got to do. I can jazz it up a bit by putting on my high school uniform to go with it... you know we all used to wear knee high socks with those... haha just kidding though... well maybe I will on halloween :) Anyways, I have a pair I got when I was in the hospital before and after reading about POTS I tried them. It definitely helps! I can stand for like 10 minutes instead of 5 LOL.
3. Aquatic therapy. And my swim suit just ripped. So basically he wrote me a script for a new swim suit. Sweet. Since both POTS and MG patients are exercise intolerant the hope is that getting me in the water will allow for slight exercise in a way my body can handle. I'm pretty excited about getting to use a pool all the time. 

I asked about IV fluid infusions but he didn't take on to that idea right now. There are many other options out there both pharmaceutical and some more natural. It's all trial and error. Hopefully something out there will help me and hopefully sooner rather than later. He really can't wait til I get off the warfarin/blood thinner for the PE treatment because he said there is more testing he needs to do but can't because of it. I can't wait for that either though as the 6 month mark gets closer I am getting a little nervous about it. Being that I've had PE in my history now, I have a clotting factor in my genetics, and I spend most of my days at rest because my body won't let me do more that all adds up to eeek I don't want another clot! I need to talk to my hematologist about it but I also don't want to be a lifer so... hope for the best?

Well I'm tired so I'm going to keep this post short. Thanks for reading! Prayer request: that I tolerate this new medication well and it gets me up and moving again along with aquatic therapy helping rather than harming. Thanks!

Tribute to my parents

Wake up. Make breakfast. Make phone calls. Do laundry. Run errands to grocery store, video rental. Buy lunch. Drive child to the doctor. Wheel child through the building. Sit and wait for hours when the doctor is late. Wheel child out of the building. Drive child home. Pick up prescriptions. Cook dinner. Serve dinner. Wash dishes. Mop, vaccuum, dust, disinfect. Go to sleep. Repeat.

If you're a parent, that probably sounds familiar. If you're my parents, it sounds familiar when it should only be a memory of the past. But day in and day out they do this, for their 29 year old daughter.

No where in there does it list spend time with spouse, but it should. It should because I shouldn't be living with them. I shouldn't need to depend on them for help with everything. But I do. I'm not lazy, I don't want to depend on them, and they shouldn't have to do this. But they do, and they do it without complaints. They do it with unconditional love. They do it no matter how bad of a day I'm having, no matter how many times I say I'm done with this, no matter how stressful it gets, no matter how much they would rather play golf, or go to lunch with friends, or go to a movie, or anything. They do it.

I say "should" but in reality life doesn't come with a list of "shoulds". Everyone is free to do whatever. You never want or expect bad things to happen but by bad things happening the opportunity for good things to stem from them exists. My parents used to say it would be so hard having me so far away and they were sad to have me leave. Well... surprise! LOL

You never know what life is going to send your way. And when it's something unexpected and life altering it shows who you really are by how you handle it. My parents have stepped in and stepped up and for that I have the utmost respect. Some might say they don't have a choice. But they do. They chose kindness, compassion, generosity, love. They chose me.

There are many things I am hoping for, but if I had a top ten list one of them on there would be to be healthy enough to not be living with them (so they can enjoy retirement) and financially able enough to give back to them even though it would only amount to a tiny portion of all that they have given to me. But for now they get super awesome handmade cards, hugs and blogs in their honor.

A special add in for my brother. His life has changed due to my own, and I'll straight out say it that that probably sucks. Really. We used to go on family vacations, go out to eat whenever, play baseball at the park or bocci or bags in the yard. Now my life is like a calendar full of plans that rarely pan out. Everything is dependent on how I'm feeling, which since it changes by the moment planning anything at all is difficult. But I don't think I've ever heard him complain even once. In fact, he's been kinder to me than I've ever known him to be. Well, maybe it's because my not going means he always gets to decide where, when, who etc. haha, just kidding.

To everyone who has stood by me through all of this, thank you. I don't think I'll ever stop thanking you because as time goes on more people drift away. Maybe they can't handle it, don't want to handle it, don't care... I don't know. But the ones who stand by me are true and I trust God has great blessings in your future after blessing me with your support. Thank you.

I'm not sure

Last week was rough, really rough for multiple reasons. But oddly enough, my MG symptoms seemed so fairly under control. I thought to myself, could my MG be in remission (everything currently being POTS)?? I wanted to post or blog about it. But something told me, don't say anything until Monday. Monday came, and symptoms returned. Well, that was weird.

Today, my body is SO weak... muscle weak. I'm forcing myself to type this out while laying in bed with my laptop sitting on top of me. If you read back to my original story where when I was given Bactrim I felt like my body was completely going on me which resulted in a trip to the ER and hospital stay of 2 weeks (the shortest stay so far which is crazy)... that's what I felt like this morning. Eating has become a struggle because my digestive system is currently under attack by POTS. But I need to eat to have any energy. It's a vicious cycle. My body was saying you won't make it. But God was saying, yes you will! I hung on. I laid down and did nothing, stayed as still as I could to give my body complete rest. And now, I'm feeling a bit better...not good, not able to do anything, but better enough to avoid that trip to the ER.

Where was I going with this? Uggh. Brainfog. I don't remember. So... how bout this...

Yesterday or today, I can't even remember, I read or heard on tv, can't remember that either... God made us human. God made all of us human. He gave us all gifts, strengths. He made us carpenters, teachers, event planners... doctors. He made doctors. HE made doctors. I recently on this blog or the other talked about how I don't want medication I want to be healed by God. But this message hit me like a brick. If God created everything and everyone, then He can heal through people and medications and treatments.

This might be too intense for some, so take caution as you read ahead. I've thought to myself before, if I don't take treatment am I in a way bringing forth my own death? Because if treatment is available and I'm saying no, well what does that add up to? I'm really not sure. So it was such the dilemma. Take medication, don't take medication? Is it to help or to harm? It gives me so many side effects, I hate it most of the time. Maybe God will heal me through His miraculous power alone. Or maybe God will heal me through doctors, treatments and medications. I don't know. So I guess I can't place myself in the position of thinking I know and avoiding one making the assumption it will be the other. But still I am faced with the decision when each new medication is prescribed- take it or don't? Discuss other options with my doctor?

I pray about it, all the time. And to be completely honest sometimes I get just so aggravated. Why can't You make it clear to me God?? Why can't You spell out what You want me to do not only with this but with everything? Why do I have to go through all of this? When will it get better? Will it get better?? I cry out like I'm hoping to hear a verbal response in return. But I'm not God, I don't know those answers. And I have to keep the faith that He does know the answers and has very good reason for everything I'm going through and have faith that it will get better.

God wants to be the center of our lives, and He should be. So back to over the weekend, I cried out to Him again, I'm done, it's all up to You now. I don't know what I was expecting. What I was hoping was everything would suddenly turn for the better. But it's on God's time and I don't know what God's time is. So I must endure these trials I go through, doing my best, and pushing forth in the way I feel God wants me to. Hoping, praying and having faith that in time, things will improve. And when they do, I will attribute it ALL, all the glory, to God... whether it be through miraculous healing or doctors and medication. God, You are in control. The Glory goes up to You, Lord.

Well, I don't know where that came from, but that's what I've got for now. Please give God a chance if you haven't already... He's given YOU everything. God bless you.

ps. I posted another blog right before this on the MG walk fundraiser I'm participating in. If you could be ever so kind to donate, it would be MUCH appreciated. Just click on the link in the previous blog post. Thank you for supporting the Fight Against MG!!

MG Walk

Hi everyone.

Last week was rough. Really rough, for multiple reasons. I'd like to say I hibernated and now I'm back... but there wasn't much rest taking place, just a lot of stress. Anyways, thank you for staying with me on this, for your support and your prayers.

I haven't been in the writing mood. I'm sure I'll get there but just not yet right now. However, I did want to let you all know I will be participating in the national MG foundation walk. It is the MG Foundation's biggest fundaiser of walks taking place in different cities. The one I'm participating in will be in September in Naperville.

Many of you have asked me before how you can be of help. I never like asking for help, but here is a great opportunity. If anyone would like to join the team, that would be awesome! I have teamed up with a fellow MG friend. The team is named "Mission Remission." All the credit goes to her on that great name! Please let me know if you'd like to join... or you can just go to the link and sign up.

The best way to help right now is by donating. The money raised goes to the National MG Foundation to help all of us with MG... hoping for a cure, through research, awareness, and support. Every little bit counts. I made my fundraising goal a high one because my determination to get through this struggle is high.

Thank you again everyone. I'll get back to my normal blog posts soon. Have a great week.

Did that just happen?

Well, whoa, that was an eventful morning! I started the beta blockers this morning with breakfast, around 7:30 am.

Around 9:00 am I started feeling sick to my stomach, wheezing which I haven't done in years I think, and felt like I was going to pass out. I forced myself to eat more food even though I just ate breakfast- and the sick to the stomach feeling subsided and lightheadness got better. I took my blood pressure and for the first time ever the symbol appeared to indicate irregular heart beat. Uggh. I tuned into the DVR to try to take my mind off my meds and catch up on some shows.

At 10:30ish I couldn't focus any more. As I paced the room and talked 1000 words a minute, my mom asked if anything seems different. I thought she was referring to external like she felt an earthquake or something LOL (really though I did feel that one earthquake in southern IL that happened like 5 years ago). I looked around and kind of thought she was going crazy haha. She then asked how I was feeling like if I had more energy. Ohhh that's what she was referring to. I said yes my legs just want to go go go.

By around 11:00 probably my body was on full over drive. In a matter of hours I went from 0 to 60 or maybe even higher. I felt like I had 10 caffeine drinks and could run run run and talk talk talk... it was INSANE. But at the same time my mind was no where to be found. I was forgetting everything, even if I had JUST taken my pill or not, if I fed my fish, what I was just talking about. Everything. And my word recall and thought process had taken a nose dive too. I said if I was in school there was absolutely no way I could pass a test right now. Body 0 to 60. Brain A to F. I walked and talked and walked and talked and typed and looked around wondering what the heck I could do to use all this crazy energy that suddenly filled me.

I decided I would paint. So pulled out all my supplies, started to set them up, ate some lunch, and CRASH. Never got around to painting. I wouldn't say I'm back at 0 but probably about 15 making my way back to 0. That was the weirdest few hours I've ever experienced. And though it may sound fun, it was far from it.

In between all this, I talked to my doctor's nurse who talked to my doctor who said "start using my chart". He's funny. I try but the messages don't go through to me. Anyways, besides the point I guess I'm still a bit in talk mode. Well more importantly what he said was that it seems I'm having an adverse reaction due to being super sensitive to meds which we know. Goodness, think if he gave me full dose? No wonder I landed in the hospital so often before knowing this diagnosis. Getting off topic again, geeze. So he said take Zyrtec, which I already do, to bring things down a bit. Then asked if I'd be willing to stop taking the medication (I was thinking heck yes!) anddd try again on Thursday (aww darn it). Well I said I trust what he advises and I'd be willing to try. The nurse told me to take my blood pressure throughout the day and call back this afternoon to let her know how I am doing. How I report I am at that time may affect where we go from here... not sure how but we shall see.

I talked to other POTS patients who have been on beta blockers and no one reported this wired feeling from them or wheezing/breathing trouble but they did say they felt off for up to 2 weeks starting it and that they got sick from it. The wheezing/breathing may be related to my having allergies or the MG... there is a caution for people taking this who have allergies or asthma and we already know what it can do with MG. And my muscle weakness has now hit since I spent the morning on overdrive.

Could part of that be what "normal" feels like? I can't even remember it but I do know I was always on the go doing something, or many somethings all at once. Now I am happy if I fit in a couple "activities" a week. But could regulating my heart rate do that? Why was it so intense? Why did it only last a few hours and then crash? Couldn't it have spread out equally throughout the day? And why did my brain decide to go on vacation? The irregular heart beat and wheezing are of course concerning. Well, these are the joys of medication sensitivity.

Good news, I'm alive and feeling closer to what I know as "my normal" right now, and for a couple hours I felt what it would be like to drink 10 energy drinks all at once... never wanted to do that to begin with but hey, cross that off the list. Praise God for getting me through that craziness, and praying to God that if/when I try again Thursday I have a better/positive reaction to it.

Thank you for the prayers! I know that's what kept this at a better outcome than it could have been.

Medication Inclination

I have this internal/external battle going on, not sure what to call it but I'll describe it.

If you read my most recent posts you know I am to start on beta blockers/heart medication. You also know that doing this may cause a drop in blood pressure when mine already drops super low. More concerning the fact that beta blockers are on the "be cautious with" list that can bring on crisis ie respiratory failure with MG. I was supposed to start this past Monday but the pharmacy did not have it in stock on Friday so I couldn't pick it up until Monday. Since the dr wants me taking it in the morning with breakfast I was then going to start it Tuesday. I decided in the mean time of waiting I would ask my doctor to make certain he knew how low my blood pressure drops, since I'm a new patient of his and he doesn't have those drops on file. It was over the weekend so I sent a message through My Chart. It showed that it was read on Sunday but no response. It says give 2 business days so I waited until Wednesday and called and left a message. Thursday morning I received a call that the power was out so they are behind. I said I was just calling to follow up on the message in My Chart. The nurse said he responded to it right away and read his reply to me. Odd it never came through and I still can't see the message he sent me. But he does want me to start this medication, on a low dose, and see how I do with it. Because of the risks involved, he again wants me to wait again until Monday- that way doctors are more readily available. So that means I have 3 more days until starting this medication.

Here's the thing. I've been concerned about this since before it was even prescribed, because I was guessing this is what he would first want to start with and I was correct. Well with the extra delay in starting I have this huge feeling within me telling me not to take this medication. I've had that feeling before and I disregarded it and the medication caused me trouble. I want to listen to the voice within but at the same time I don't want to distrust this doctor. We are new to one another and I would like to establish/build a solid doctor patient relationship. So I don't know what to do.

This goes even deeper though. Lately I've come across readings about God's healing power. It's something I do believe in. But at this point, it's even more than belief, it's wanting to allow God His power with no obstacles in the way, ie medication. Is this dumb? Not listening to the doctor, not taking medication readily available to help with the healing process... I don't know. I really don't know. And I don't know what to do. I'll probably end up taking the medication and keep praying to God that it doesn't harm me. But then I hear the voice right back saying then don't take it in the first place. Doctor vs. God. Obvious choice is God. But of course then there is what you can see and what you can't see. That's where faith comes in.

I believe in the deepest of my heart that I can be healed by God. Piece by piece I've been attempting at my very best to give myself to Him. This is one part of me I've never really given to Him. I have these earrings that have a mustard seed in them. Sounds weird, but think Scripture. "Truly I tell you, if you have faith as small as a mustard seed, you can say to this mountain, 'move from here to there' and it will move. Nothing will be impossible for you." Matthew 17:20 This is the growth of my faith. And yet I still can't entirely let go because these worldly things, such as doctors (said with utmost respect for this one) with medications, stand in my way.

And so I've asked, God if you do not want me to take this medication, please not only make sure I know this but make sure my doctor knows this. Be the voice unto my doctor that is like a lightbulb going off in his head and let him know instead what you want me to do. Please make sure he knows this and lets me know this prior to my having to start the medication this coming Monday. In addition, give me the knowledge in words and actions in how to discuss this with my doctor to come to mutual agreement on treatment. Is this too much to ask? Nothing is too big for God. My trust is in Him and one way or another He will carry me through this.

Another mish mosh of thoughts that haven't been sorted through before shooting them out to the world. God says write, I write. God says don't take that medicine, I don't always listen. Something I need to work on. Giving my body over to Christ, not just my mind, heart and soul. Though if I entirely gave my heart, mind and soul to Christ, my body would also be given. So truly I have not reached the point of turning myself fully over to God. God needs all of me to truly restore me. That has always been my prayer for everyone else, to give themselves fully to Christ, but I think I need the same prayer. Let no part of me follow worldly ways, rather transform me fully into a follower of Christ Jesus.


Therefore, I urge you, brothers and sisters, in view of God’s mercy, to offer your bodies as a living sacrifice, holy and pleasing to God—this is your true and proper worship. Do not conform to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God’s will is—his good, pleasing and perfect will. Romans 12:1-2

Part 3

I promise this time I will tell you my diagnosis. I don't know why I've had such trouble getting to the point of letting everyone know. I told my closest family so it's not like I was waiting on doing that. But finally I feel some sort of wall lifted up like I can move forward with telling everyone now.

Summary of Part 1... I've had ongoing symptoms for over 3 years. Though I received the MG diagnosis last year, there were still all these other symptoms that didn't fall under MG, so after surgery I pushed on to get it figured out. God led me to the hospital, to the doctor and to the diagnosis.

Summary of Part 2... Some of what is done for this second diagnosis/what helps is the same or similar to that of MG. So, I have a head start on it in a way. But much treatment of this second diagnosis involves many medications, including a beta blocker/heart medication that my doctor wants to start first. It is on the be cautious with list for MG as it can bring on crisis. That partnered with my already low bp makes me concerned.

Alright here we go.

Does anyone know what the autonomic nervous system is? It is a part of the nervous system... the part that is involuntary. Basically it is the "control system" for your body. If there was one thing in your body that makes you work, like a battery for a car, that's the autonomic nervous system. It controls your heart rate, blood pressure, temperature, digestion, respiratory rate, sweating, so on and so forth.

Mine... is broken. I have dysautonomia, also called autonomic dysfunction... specifically I have postural orthostatic tachycardia syndome, POTS for short. Leave it to me to have another thing next to no one has heard of before.

So what exactly is POTS? POTS is defined by (though just one of many many symptoms) extreme rise in heart rate upon standing.

I underwent autonomic testing in which a portion included a tilt table test. That means I lay on a table and it raises me from laying to standing. You're supposed to stay standing for 45 minutes to an hour or until you pass out, whichever comes first. My doctor laid me back down after about 20 minutes. By definition to be diagnosed with POTS your heart rate has to rise by at least 30 bpm within 10-20 minutes of standing up. Mine rose 70 bpm within seconds to a couple minutes. That's alarming. Even my doctor seemed shocked by how quickly my body changes. He told me to tell him whenever I had any symptoms but I didn't even have to tell him, he knew by seeing my vitals. My vitals and my symptoms strongly correlated. He said I got extremely flushed upon standing and after a while went pale, and my legs red. He knew when I was dizzy, nauseated, lightheaded/faint, weak, etc... and yes all of those happened within 20 minutes time, just from standing. He said if he didn't lay me back down I would have passed out.

Along with rise in heart rate, the majority of POTS patients have a drop in blood pressure. This happens to me also. With those two things out of whack, your system is out of balance... not just physically uncoordinated, though that is one of the symptoms... but your entire body just "off." I'm still trying to understand just exactly how this all works and why and such. But my understanding is it is something to do with blood flow. If there isn't enough to your brain, you get brain fog, memory problems, trouble with word recall. If there isn't enough to your digestive system, you get motility problems (which explains the achalasia diagnosis). So on and so forth.

Pretty much all of my symptoms I've ever had fall under this autonomic dysfunction/POTS. Here is a link to the list of symptoms. I can truthfully say I've had the majority of those. Here Because there is such a wide variety of symptoms, many that don't seem to relate, patients are often written off as anxiety, tossed around specialist to specialist, and treated with unnecessary medications for each individual symptom. Even doctors who may know about autonomic dysfunction sometimes think its just deconditioning. Deconditioning can happen due to POTS but the problem is you can't recondition yourself easily because of the POTS. Doctors often fail to look at the body as a whole and figure out why all of these many symptoms came on out of no where and all about at once... until you find that Dr. Awesome who solves the mystery.

How do you get POTS? A lot of teenagers get it going through growth spurts. Some are known to get it after pregnancy. Both of those involve a huge change in the body, something that could throw your system off. I obviously don't fall under either, however looking back I did get stomach aches very very often in gradeschool, high school and after college. Some did think I was making things up but I really felt sick a lot. So it could have been in me and brought out by something, or it could have come about in the past few years. Other things that may bring on POTS other than in teens and pregnancy... illnesses including pneumonia, mono, MG- all of which I've had, environmental changes, huge life stressers such as divorce. It seems like anything that is a shock to any part of the body can bring this on. It also seems like it's not well researched so no one quite knows exactly.

You have good days and bad days, good minutes and bad minutes... it can change from good to bad in a snap. Your "control system" does whatever the heck it wants to do whenever it wants to. No I can not "just relax". I can not make this go away. I can not just stop my symptoms by thinking positively etc. When symptoms come on, I am told to lay down. My doctor said when I'm laying down my body is "almost completely normal." Well that's a plus, but it's very difficult to lead a life lying down all the time. Sitting is the next best to laying down, but symptoms still occur. Basically your body hates gravity and needs to be flat. This explains why I am worse most mornings. With MG you are supposed to be your best in the morning. I related it to not taking my meds overnight so I'm weak when I wake up. Well apparently its a POTS thing.

There is SO much more info I can share on this but I think this is enough already for now. You might think oh your heart rate goes high and blood pressure drops, big deal. But again it is much more than that. It is nausea, dizziness, brain fog, coordination problems, breathing, temperature, feeling super hot, feeling super cold, vision, super dry mouth, sensory overload, weakness, etc etc etc. Your heart rate and blood pressure are needed just as much as oxygen. Think about if you were deprived of oxygen and how would you feel? That's how I and POTS patients feel pretty much all the time. They say POTS patients lead a lifestyle similar to that of those with congestive heart failure or COPD.

My doctor and I have the same goal of getting me out of the wheel chair. It's going to take time, medication, patience, hope  and hard work... but I'm determined, very determined. I want to go against all odds and get back to living a "normal" lifestyle. The plan is to get my heart rate stabilized with medication. Then once I'm off the blood thinners (which interact with like everything) to probably add other medications as needed. If we can get the vitals under control he wants to try to build me up slowly to handle more and more. He said it's pretty much un-doing what every other doctor did to me. It's odd because I have said the doctors in Texas made me sick... now it seems partially true. But I'm back in Chicago and that means let's get the old me back! (while keeping the great parts of the new me of course!)

My body may be broken, but my spirit is very much alive and well! Here's to hoping I can get out of the wheel chair, walk- no run- a mile+, and get back into the work force sooner rather than later! The world may say no you can't, but God says yes you can!!

Thanks so much for the support, encouragement and prayers.

Part 2

I'm back... So, in summary of Part 1... I've had ongoing symptoms for over 3 years. Though I received the MG diagnosis last year, there were still all these other symptoms that didn't fall under MG, so after surgery I pushed on to get it figured out. God led me to the hospital, to the doctor and to the diagnosis.

The good news is I am SO happy to finally again have a word to put to all my symptoms... and this time it covers pretty much all of my symptoms. In addition, I most likely do not have achalasia or a heart condition... per say... (you'll understand what I mean by that later).

More good news is the hope... My doctor thinks that the majority of my problems stem from this second diagnosis, not the MG. He thinks my MG is probably not too bad, that I have it pretty mild. That would be awesome! It would also explain why I've been at a stand still even after trying various treatments. With this second diagnosis, there again is no cure, but symptoms can lessen with medication and there is again the chance of going into remission. Those who have it again very much vary as you can be near "normal" and work and such all the way through the spectrum to being completely debilitated. It is very much like MG in the sense that no two people are the same.

More good news is that is it similar to MG in the sense of what you should do... kind of sort of... What I mean is that for both you need to stay out of the sun/heat, not take hot showers, rest a lot, do things in spurts/not all at once. I've already been doing all of that for the MG so I'm a step ahead there. If you listen to your body, you'll naturally do what you're supposed to without even knowing it.

What else can I tell you about it before getting to what the diagnosis is? Well what does treatment include? People with this need to drink a LOT of water... makes sense why I drink more water than anyone I know. IV fluids help... yep, I've noticed that without knowing I had this. Increase your salt intake.... I LOVE salt, so that works out pretty well. You have to be extremely careful with medications as people with this have extreme medication sensitivity... yep, I'm a pro at experiencing that one. Now for the real treatment... unfortunately, a lot lot lot of different medications (of course at very low dosage)... maybe only one or two, but maybe a lot more, really depends on the person.

For me, my doctor wants to start first on a beta blocker. That's what scares me the most. First of all, we're messing with my heart here, that's kind of scary. Second, beta blockers are on the "be cautious with" list for MG... has the potential of bringing on a crisis ie. respiratory failure/needing a breathing tube. They also lower blood pressure and mine already drops very very low so that is concerning too. He feels the benefits outweigh the risks and that without medication I'm not going to be able to function in life. I will probably be starting this medication this week and praying to God I don't have any serious side effects/negative reactions. If you could join me in prayer for that I would very much appreciate it.

Well I think I've typed enough for now. I think I'm going to make this be a 3 part story instead of 2. I promise next time I will tell you what I have been diagnosed with. I'll try to write again tomorrow.

Thanks for reading! Thanks for praying! God bless! :)

Part 1

Hi everyone! I know it's been a while and I've been blogging less. But now I have some pretty big news to share.

Since 2010, I've had many ongoing symptoms. Though I got diagnosed with MG last year, there were still all these other symptoms that MG does not explain. I heard multiple times that it seems like there is something else but no one could figure it out. I also heard multiple times that all these other symptoms are "just anxiety". I knew that was not true, and by now I think we all know I'm a fighter... fighting for my life and fighting for what I believe in.

When I first came back here in January every bit of me was focused on getting the surgery, and all the other symptoms were tossed aside. I had to get plasmapheresis beforehand so my body would tolerate the surgery. Because of this, I researched plasmapheresis and central line placement. I found a video on you tube and it was of a girl who was getting plasmapheresis for something I had never heard of before... but as she described her symptoms and her life, I couldn't help but completely relate. I placed that in the back of my mind as I pushed on with getting the surgery set up. Keep that in the back of your mind as you read on.

The surgery got pushed back and pushed back. That little voice in my head was telling me "go to Rush University Hospital." But, there wasn't a robotic cardio-thoracic surgeon there, so I ignored that voice. Keep that in the back of your mind also as you read on. Finally guided by my own persistence rather than the will of God, I got my surgery done at a different hospital... and boy was that a mess as I've previously told.

After surgery, I needed to get to the bottom of if I do or do not have achalasia- a rare but serious GI motility problem that I was diagnosed then undiagnosed with while in San Antonio. Finding specialists in this are few and far between but it just so happened I was led to one... at Rush. Because I thought this could be a major concern with the possibility of needing surgery for it, I thought it would be smart to set up my MG neurologist there too. I certainly did not want to end up back in the hospital I was just at, who my current neurologist works through. Well if there are two doctors under one roof, I might as well get them all set up there.

We know the surgery resulted in complication of pulmonary embolism. With the pulmonary embolism added more weird heart symptoms. I already had irregular beats, palpitations and fast heart rate, but now it was worse. When I got bad chest pain, it led to an EKG. It was abnormal so I had to go through some further heart tests, also abnormal. My cardiologist and I talked about me seeing a specific specialist, one of the best in his specialty, who recently came here from out of state and is now at... Rush. I called to set up an appointment with him and it just so happened he had a cancellation for an opening right away. That was about 2 weeks ago. God was placing the pieces together.

July 22, 2013... the day the last piece of the puzzle was placed in. It was almost an epiphany that my entire reason, entire need to come back to Chicago- was this doctor right here. This doctor at this hospital God was telling me to go to for 6 months now and I finally listened. (See how we end up so much worse off going against the will of God?!) That day, a part of me that's been missing ever since getting sick in 2010, she came back too! Honestly, this may have been the happiest day of my life.

I didn't get a definite diagnosis that day but I knew I was now, finally, in good hands. Well, he talked about what he expected was going on and as he described the symptoms I was amazed I fit every single bit of it. At the end of him talking, I said "you just perfectly described me." He wasn't shocked... he wasn't shocked because he knew- he finally KNEW- what was going on with me!! But before the diagnosis he would need to do some testing. I just had that done yesterday, and yesterday- I received a new diagnosis- a diagnosis that explains every single one of my symptoms that is not MG- a diagnosis that replaces every other misdiagnosis. That diagnosis is that same one that girl in the plasmapheresis video had. God really was trying to tell me something all along, trying to lead me to the doctor, to the answer.

But to find out what that diagnosis is, what it means and where I go from here, you will have to come back for part 2. For some reason it's been hard for me to get to the point of sharing this with anyone. I've known for 2 weeks, but I couldn't bring myself to say anything. I'm not quite sure why. It is a huge relief and something I would like to share. So I'm sharing it slowly and soon you will know what I know... but for now I'm tired and signing off :)

And yes, I still have MG. But now I also have my missing puzzle piece to make me feel whole again. Thank you JESUS!!