Meds attacking me

If you haven't read the post titled "Oh it's BIG" read that first, or what is to come won't make much sense.

I've been on the medication for about 2 weeks now...upping the dose so so slowly. The goal is a whole pill twice a day. I was able to cut the pill down to 1/8 pill twice a day to start. The first night was REALLY rough. It's a miracle I didn't crash to the ground at 2am. I woke up feeling so incredibly sick and about to pass out any second. I got up to change the battery on my heart monitor (oh yeah I'm wearing a 30 day heart monitor- but don't worry I can take it off to shower lol) I immediately just about fell back into bed and laid down. The next day still felt pretty sick, but then it was ok. I think it was that initial effect of my body saying "no!" By ok I mean I've been feeling weaker than usual, more stomach aches/nausea and dizziness than usual, but not to the point of preventing me from doing the things I absolutely have to do... until today.

Yesterday I felt kind of sick. I had aquatic therapy and didn't think I would make it. Well it just so happened I had an open cut or something on my leg so we only did massage therapy. Exactly what I needed, laying there getting a massage. Except, it wasn't. It was exactly what I didn't need. There were two patients there before me and them and the two that work there were talking away SO loudly- you know how women get when they are excited about something- that's what it was. And what was it about? Food. The last thing I wanted to hear about as my stomach was not at all feeling good. Sensory overload was in effect and I probably looked really rude but I had to completely tune them out. Side note- we are ending aquatic therapy. When I just recently saw my neurologist we decided it doesn't seem to be helping much if at all. My thought- duh, exercise makes MG worse, but I did it to prove to him it's not "just POTS" affecting me right now. 

Anyways, back to my story. Today I woke up so much worse. Oh my goodness. I'm typing this now feeling pretty sick... and I say pretty sick as opposed to really sick because as long as I sit or lay and barely move and don't eat or drink anything then I don't reach the point of really sick. But that's pretty difficult to do. I have to get up about once an hour if even just to pace the room because of the whole blood clot risk. And I have to attempt to eat and drink something because of course not eating or drinking is not good for you, but it's especially not good when you have MG and POTS. My body is so weak. My low grade fever is back but higher than my normal low grade fever. I took zofran which helped a little but not enough to allow me to eat or do anything normally. Oh and my brain isn't working very well either. I can tell my thoughts are coming out scattered right now but when I was typing to someone earlier I couldn't remember anything. Anyways, about all I have in me right now are some carrots and celery. I'm going to try to eat a few more later and add some peanut butter to it. I've lost 5 lbs since starting the medicine which is ok since I gained some since my return to Chicago (darn you pizza and beef!) but if I keep losing that wouldn't be good. This is so not fun.

Right now I just pray and pray and pray that these symptoms subside in time for Thanksgiving. Last year this time I was in the hospital for 6 weeks. I don't want a repeat. I thank God I'm at home, or my parents home, as opposed to the hospital. I pray that I can continue to get in enough fluids here that I don't need IV fluids in the hospital. I pray that the medication making me worse before it makes me better only happens this once and doesn't last long. I pray that I can eat enough to not pass out. Please God hear my prayers and help me through this. And I thank You Lord for staying with me and carrying me through it as You have been! You are my strength and my everything. 

I keep telling myself I can do this. I keep reminding myself I am more than the symptoms that try to bring me down. I keep thanking God for strengthening me through it all. I need to stay focused on getting healthy and remember this is just a short term thing that is happening in order for me to get healthier. I forget the fact that their are no promises when it comes to your health and I forget the idea that remission is not in my future. I can do this! I can do all things through Christ who strengthens me. Philippians 4:13 I keep repeating that verse because I literally live by it these days.

Either last night or this morning (when you're half a sleep it all blends together) I thought about something. So many people say "don't let your illness/disease/condition/sickness/whatever define you." I disagree. Let it define you! Just don't let it defeat you. My illness does define me. Why? Because I fight through it every single second of every single day and due to the fact that I'm still here I can say I'm beating it. It's not something I can walk away from like those who define themselves by their job or even other people, that they can walk away from. If you can't beat them, join them sort of thing... I took what I was given and I turned it into a passion of writing and an enjoyment of designing. The devil may be trying to use this illness to knock me down, but with God I will use it to keep on stepping up.  If I didn't have MG or POTS or candida, I wouldn't be the person I am today. I wouldn't have opened my eyes and see the value in each and every single thing and person. I wouldn't have lost so much anxiety and fear and gained so much trust in the Lord. I wouldn't have known that I could do this completely on my own (with God of course and my parents and support of friends but you know what I mean). So yes, I let this illness define me because I'm a better person because of it. 

Fall down seven, stand up eight.... or in my case fall down 4572543754, stand up 4572543755.

Praise God! Amen!

Sense for cents

I've used a couple different analogies to explain MG before. Now let's use another one. Pennies in a jar.

Let's imagine we all have a jar of pennies. Here is the difference. If you are generally healthy, without a chronic disabling condition, your jar is HUGE. Pretend with me here. Your jar is a 3 foot tall 2 foot wide jar... the biggest jar you've ever seen... completely filled with pennies! Wow that's a lot of pennies! My jar, or anyone who has a chronic disabling condition- their jar, is a tiny jar. It is a 2 inch high by 1 inch wide jar, very very tiny. And, the jar is only half filled with pennies.

For every single thing you do throughout the day, you have to give a penny to it. When your pennies run out, that's it. When your pennies run out you have to sit or lay down quietly and rest until the next day with the next jar of pennies. So let's imagine everything we have to hand a penny out for...

You start imagining the following... going for a run, walking the dog, cooking the family meals, going shopping, changing clothes until you find the perfect outfit, organizing a room, mowing the lawn, wrapping some gifts, driving here there everywhere, washing dishes, doing laundry, going to a party, meeting friends for drinks, working at your job, texting on your phone again and again and again...

I start imagining the following...

Using my arms: picking up a glass of water, checking email, turning on the light, opening the door, closing the door, turning off the light, turning on the shower, lifting arms to wash hair, blow drying hair, combing hair, putting on make up, changing clothes, hanging up the towel, putting on shoes, opening the pill bottle, closing the pill bottle, opening the fridge, closing the fridge, pouring a jug of milk, opening the cabinet, picking up a bowl, opening the pantry, pouring cereal, opening a drawer, eating with a spoon, writing something down, holding the phone up to my ear, getting the mail, making a sandwich, opening a bottle of water, holding a book to read, picking up something that fell, making the bed, washing face...

Using my legs: walking to the bathroom, walking up stairs, walking down stairs, walking to the kitchen, standing up, standing to take a shower, standing to fix a meal, walking to get the mail, walking to the car, walking into the doctor, stepping into the bathtub, stepping out of the bathtub, walking up a few steps, walking while carrying something, bending to pick something up, bending to tie my shoe, picking my foot up to tie my shoe...

Using my eyes: reading, checking email, typing, writing, reading a book, watching tv, conversing with someone, looking through the mail, fixing hair, putting on makeup, fixing a meal, looking for something, checking texts on a cell phone, looking for the right pill to take, looking at the calendar, going through wallet, finding an outfit to wear, finding shoes to wear...

Using my back/chest/abs/neck: standing, walking, sitting, bending over, reaching up, reaching down, turning, opening doors, closing doors, lifting something, showering, changing clothes, putting something away, breathing...

Using our jaw/throat: smiling, chewing, swallowing, talking, drinking, laughing...

You were able to do everything listed even if you didn't want to, even if you decided not to, without even thinking about it... and you still have pennies left in your jar. My pennies couldn't even cover all the things I imagined, and none of the things you imagined. Therefore I had to make some choices.

I chose to take a shower every other day instead of every day. I chose to let my hair air dry instead of dry with a hair dryer. I chose to ask someone else to cook for me. I chose to ask someone else to do my laundry for me. I chose to ask someone else to drive me to the doctor. I chose to let someone else do the grocery shopping. I chose to get pushed in a wheel chair instead of walk.

However, they weren't really choices at all. They were adjustments I had to make in life in order to have enough pennies in my jar to make it through the day... each and every day. Sometimes life surprises me with a few more pennies than usual, but never a full jar. Other times life takes away some pennies and I have to find even more things I can omit from the day.

This is life with MG. A jar looks "just fine" and at the beginning of the day we have quite a few shiny pennies and seem to even do "just fine" as we walk, talk, smile and breathe. But as the day goes on, after a moment of stress or heat or wrong medication, or sometimes even out of nowhere, those pennies get used up and we have to wisely pick and choose how to use the rest.

It may only be a penny and we may only have a few, but these pennies are so incredibly valuable to us.

Fear

Have no fear.
God is here.

I walked an entire grocery store yesterday. Whoa. Normally I use the wheel chair. I did it because I was having a "good" or stronger moment so I thought I might as well make use of this, and so I did. Afterwards, I thought that was a bad idea as my body went weak. I over did it. Sometimes, maybe actually most of the time, it doesn't catch up until later. I pay for it minutes, hours, the next day or even multiple days later. And so today I thought I will rest and watch movies. I wanted to blog. I have lots to blog about. I'm way behind on thoughts vs posts. But I said no, rest is needed. And then I turned on a movie.

In the previews before the movie was a boy and father figure, after the boy's dad passed, standing in the middle of a country road looking out into the world. I thought to myself "boy it would be nice to be out in the middle of 'nowhere' but because of MG and POTS I need to always be somewhat close enough to a hospital." I caught myself there and then I thought I must write...

I don't need to be close to a hospital. What do I need to be close to? God. God and only God. I can go out in the middle of nowhere. I can do anything. Anything. As long as I stay close to God. There is no point and no need to fear anything. I don't need to fear getting worse health-wise, I don't need to fear not being near a hospital, I don't need to fear death even because I know I am going to Heaven because I have Jesus in my heart. No fear but God fear.

This thought is so freeing. I can do ANYTHING... through Christ who strengthens me. Philippians 4:13. I absolutely love that verse. At times I forget and revert back to the fear and the worry and even the why me. But you know what that is doing? That is me saying "God I don't trust that you can get me through this." Well I do trust that He can and I know that He will. But I must stay close to Him.

I could go on and on and pull out Bible verses but I feel my point was made and I feel that's all that needed to be said. However, now that I'm already writing I must continue...

Just because we can doesn't mean we should. For some that might mean lying, stealing, taking advantage of, gossiping, hurting, cheating, etc etc. Yeah you can do any of that, but if you have God, you won't unless it is his will or unless you choose to go against Him, which personally I highly advise against. For me this means more than that. Just because I can doesn't mean I should.

I've said before I can do just about anything for a short time. I can run... to the thermostat to change the temperature when I'm freezing. I can play basketball... by tossing one ball and being done after that. I can participate in a 5k... by using a wheel chair. I could walk an entire grocery store like I did yesterday. I could push myself past the point of any of those. But just because I can doesn't mean I should. I know what the outcome will most likely be.

Why would God allow that? Why would God "let" me have an illness? Why me?

Why me? Maybe it's not meant to go against me, maybe it's meant FOR me, and more so for others. If I didn't have this illness, I never would have taken the time to start a blog. I never would have open my eyes to the value of all that surrounds me. I never would have met and become friends with so many absolutely amazing people. I never would have had such a testimony to glorify God in.

They say it's not about the destination but the journey. It's partially true. My destination is Heaven. That is my home and earth is a place I am passing through. You never know when your time will come and when it does it may in fact be so sudden that you don't realize it. That is what I live for. And in doing so I would love to welcome others onto that narrow path that leads there. And there we have the journey. Every little moment that adds up to that which we call life. Every person, every thing, every thought, every moment.

So I live to glorify Him, and if the way He wants me to do so is through MG and POTS and candida and anything else that may or may not come my way, so be it. I used to be so afraid and concerned about everything. Of course I do still have my moments, but for the most part in the grand scheme of life I realized it is so much more and worry is a waste of time. As long as I am living righteously, living for Him, then live- just live. Do what I can, when I can, how I can and give it my all.

I'm going to write a book one day. No, I'm going to publish a book one day. And if I don't make it to that day, please someone finish it out for me. I'm also going to live in North Carolina. Why? Not because I want to. I do, but, it's because I feel God calling me to. Live for Him and you won't go wrong. It may be tough but it's nothing compared to Jesus getting nailed through His body suffering on the cross. If you look at it that way, I and all of you all have it easy. So accept Jesus as your Lord and Savior and then have no fear.

I realize maybe this should have been in my other blog, but you know what, it's here. Maybe there is a reason for that. And maybe not. But I'm not going to worry about it. Have a blessed day.

Oh its BIG

2010... 3 years ago... just months after initially getting sick and not getting well, I started doing my own research. I came upon something that I thought made perfect sense as the answer to my sickness, as a diagnosis. I brought it up to doctor after doctor and I was brushed off. So, I pushed it to the back of my mind.

3 years later... I WAS RIGHT.

I hate to say I told you so to anyone and I hate to sound arrogant because that is not my intent, but time and time and time again I am right about something... yet people go against me and make it much more difficult than it needs to be than if they just listened to me to begin with. I'm not an expert in anything but I know my body, I know God, and I know when I'm right. And I was right about this.

And so I will explain.

Obviously traditional medicine has not been working out for me. Furthermore I still face questioning and doubting by doctors and to be straight up, I'm sick of it. I have two serious diagnoses and just because you don't know how to treat them doesn't mean I should be left hanging. But perhaps God had a reason behind the stand still on my treatment.

A couple months ago I don't know what led me to it, but I found a website about functional medicine. Functional medicine combines traditional and alternative and more importantly, functional medicine tends to look for the cause and not just treat the symptoms even if the symptoms fall under a diagnosis. Sometimes functional medicine doctors are covered by insurance. Well I checked each one of the doctors listed on that website to my insurance and I found a couple who were covered. I researched those that were and chose one who happens to be about a 15 minute drive away. I had my initial visit a little over a month ago and then a follow up just a week ago.

He is the most thorough doctor I've ever encountered. He looked through all the old records I brought in, read through every single part of the extremely long paperwork I had to fill out, asked questions on it all, listened to me and examined me. And then he figured it out, part of it at least so far. And guess what? I didn't say a word about my thoughts on it until after he figured it out himself.

If you are a traditional doctor reading this or one who strictly believes only in traditional medicine, you can either stop reading right here or read on with an open mind outside of what you were taught in the books. To all others, I say that because this is something many traditional doctors do not believe in or if they do they claim it's not possible for anyone who LOOKS healthy, they claim you really just have to have cancer or HIV or look very very sick in order to have this. Again, some doctors are like robots reading out of books. (No not all and I know there are some very good ones.)

Let me first say, when I made my first attempt at blogging it was specifically on this diagnosis that I received now 3 years later. I talked ALL about it. Shame on myself for deleting that blog because of others saying garbage to me about it and discouraging me from doing my own research, figuring out my problem myself and going after my passion of writing. Shame on me for listening to people trying to bring me down instead of raise me up. I was right!

My new diagnosis (not to replace my other ones though): Candida!!!!!!

I pretty much remember most of what I learned 3 years ago so I'll just cover what I remember for now. Candida is yeast overgrowth within the body... no not just thrush or any other visible yeast. It is a systemic overgrowth throughout the insides of your body which primarily reside in and start in the digestive tract. The way you can get this is basically your body out of balance- being given too many medications especially antibiotics, inhalers and steroids, eating too much sugar/yeast or unhealthy/processed foods, and you are more susceptible to it if you are already sick.

What does candida do?

Everything I have encountered. It can affect your entire body pretty much in any way. To name a few of the very many symptoms, all of which I have- dizziness, fatigue, brain fog, weight gain or loss, reflux, nausea, cramping, sore throat, post nasal drip, ear infections, ringing ears, sensitivities to food and environment, joint pain etc. etc. It can harm you to the point of being unable to function.

How do you treat it?

That's the very tough part. VERY tough. There are 3 options here, including all of them is the best bet. One- pharmaceutical- but not the antibiotics and other stuff that makes you worse. Instead a medication to go against all those other ones, to kill the yeast overgrowth. One of these is less harsh on the body but sometimes the yeast become resistant to it. Some others are more harsh and you need your liver and kidneys checked during treatment. Both can take a very long time to kill off the yeast especially if the infection is very wide spread and severe. Two- non-pharmaceutical- you can take certain supplements as natural ways to kill off the yeast such as garlic, caprylic acid, oil of oregano and more. Again a very long process and you have to switch up the treatments to "fool" the yeast in essence. Furthermore, you must take probiotics at a very high dosage to give your body more good bacteria to fight the bad stuff. Three- changing your diet. This isn't simple at all especially because everyone is different. The two biggest things to remove- sugar and yeast but most of us are also very sensitive to/made worse by dairy, processed foods/additives, and gluten. This doesn't leave much when you think about what you normally eat. Some things you might not think of that are bad for those who have candida- vinegar, mayonnaise, pizza, too much fruit, juices, sour cream, beer, wine... Treating candida is insanely difficult and a long long process, could be life long.

So how did I get it?

Simple. Exactly what I thought happened, happened. When it comes down to it, the doctors made me sick, really. They treated each symptom instead of putting it together and figuring it out. I was way over medicated. And since I had never really been sick before I didn't know any better, I trusted what they advised and I listened. I was literally on 50 medications within 9 months time. Society is taught that medicine is good. Well, medicine can be bad. Very very very bad, especially if used when it shouldn't be. That's what happened to me. Medicine made me sick instead of better.

So now what?

Well he wants me to try to eliminate everything I can from my diet. Before this, I already started doing the dairy free, started doing some gluten free, and for a long while have reduced my sugar and yeast intake as I know they bring on my symptoms very bad and I'm not much of a sweets person aside from my dear love of chocolate. I rarely eat fast food anymore either. Actually being on warfarin helped me as I HAD to have greens every single day in order to maintain my INR level. It got me into eating even healthier.

He is also treating me with a pharmaceutical medication to attack the candida. To start, he wants 3 months of treatment. Here's the thing with that. It has the good possibility of making me really really sick before I start (maybe) getting any better. That happens because of the attack against the candida and flushing them out of your system. You basically have to rebalance your body and then keep it that way. Because I am SO sensitive to medicine he is letting me start super low and up my dosage with time. He wants me on 1 full tab twice day 1,000,000 mg! OH my! But I started on 1/8 a tab twice a day. I should get an award for amazing pill cutter with that one! haha. Anyways, I started this yesterday. Already it's affecting me. Last night I woke up and almost fainted and got really sick. When I woke up my heart was going nuts and I was absolutely freezing. Today I'm not doing much of anything because my stomach is all out of whack and I'm so dizzy. I also was given Zofran to try to keep my stomach a little more under control.

After 3 months he wants to put me on a different medicine to try to push it a bit further. But pretty much forever, I have to watch what I eat and not take antibiotics, inhalers, steroids, etc unless absolutely needed... (try telling that to my other doctors!).

I don't think I'm making this sound nearly as serious as it is. It is really really bad and really serious. Unfortunately many people have it and don't know it but not to this extent. It's not just body out of balance as in take some vitamins and you'll be ok. It's one portion of your body that naturally lives in you got super out of control and took over and is attacking you. If untreated it will continue to attack you until you can't defend against it anymore. It pretty much really stinks. But I'm not reacting to it that much because of the fact that I've kind of been dealing with this mentally for 3 years.

What does this mean in regards to MG and POTS?

It MIGHT make it lessen if treatment is successful. He isn't saying candida is causing my MG (I'll get to that in a minute) but it might perhaps have something to do with all the POTS symptoms. The goal is just to make my body better in however way we can. It will be gradual and I will get worse first. I just hope I'm strong enough to not land in the hospital during this treatment. I also pray I have the support needed to get through this.

What else?

Here we go. Candida isn't the only thing. He thinks there are 2 other underlying causes, but this is the most serious and most important to tackle first. The other two things are something with low cortisol- so something about the whole fight or flight thing and my body's fatiguing so quickly. He isn't doing anything on this quite yet but said it is treated with steroids or cortisone... which slightly is a problem since steroids are on the no list for candida. Goodness I'm such a problem patient. And the other is this...

Epstein Barr Virus aka MONO... but not how you know it. I have it chronic or recurrent... meaning it either never leaves me or keeps coming back. This could explain a lot in regards to my overall energy level, rapid fatigue, weakness, a lot of things. He said we would attack this with a long term anti-viral to try to get the levels in my blood down. Here's the big thing- there is a link between Epstein Barr with both MG and POTS! It is thought that it could be the cause of either/both. Sooo... if we are able to attack the Epstein Barr and rid it from constantly being in me, we may in fact take care of the MG and/or POTS in return! How exciting is that!! But, I'm hesitant to get too pumped up on this one because he first wants to do research and see what would be the best way to go about this. Again it's a difficult one.

So, to conclude, my new functional medicine doctor believes the base/bottom/starting point/cause whatever you want to call it is 3 things- candida, a cortisol problem, and chronic/recurrent Epstein Barr. It's going to be one heck of a ride ahead, but at least I finally have someone I trust going in the same direction, in the driver's seat!

Here's to hoping this is the start of something amazing! Thank you all for your continued support and prayers as I begin this treatment. Thank you GOD for finally turning what I knew all along into a definite diagnosis with hopeful treatment.

An Honor to Share

Ok, forgive me, I'm not immediately getting to the second portion of my last post... the part that is my "big news."

I will, but I wanted to share some other very exciting news... I was chosen/asked to be featured in the Myasthenia Gravis Foundation of Illinois newsletter! I feel blessed to be able to share my story and recognized as someone who is an inspiration to others. I really cannot take credit. I send all of the glory up to God and praise Him for getting me through this! I thank Him for giving me the gift to write and to inspire; and if at any point I've done anything good intentionally or unintentionally for anyone, please thank God for I am only a vessel for Him to shine through.

The newsletter has not been posted to the MGF of IL site yet to link to so I am including below my write up. They titled it "If My Life Were a Building".

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29 years ago I was brought into this world. My parents had high hopes for their very healthy, active, little girl. Growing up with a type A personality, I had high goals for myself as well. I had it all planned out, after graduating college with honors I would travel the country as an event planner and eventually open my own company.

If my life were a building, just as it was getting built higher and higher, in 2008 story by story, the building started to be taken down. As the economy went down, so did my company and the start of my career. The choice was made to move to Texas which had a better economy, in 2009, but along with more jobs came more allergies. Allergies turned into double pneumonia, twice, in 2010 and a severe reaction to Levaquin making me temporarily unable to walk. Then started a 2.5 year battle of trying to figure out why I couldn’t regain my health.

Each new symptom brought a new prescription and each new prescription brought a new symptom. Medication seemed to make me worse rather than better. Weakness, fatigue, pain, trouble swallowing, trouble breathing, trouble seeing, trouble digesting, feeling like I would faint, heart irregularities, brain fog... there are too many symptoms to go through them all. More times than I could count I was told it's "just anxiety." I decided, being overseen by a doctor, that I would stop all medication and try things the natural way. I was improving... until a serious infection that I didn't think I could beat in February 2012, in which I was put on Bactrim double dose. Shortly after taking it, my body started to shut down. As my breathing declined, the ability to walk was lost, I felt I was speaking my last words and taking my last breaths. The ER sent me home telling me to continue the medication saying it's "just anxiety." If I listened I could have died, but instead I listened to my body. I was soon after admitted by the doctor who prescribed it, but still told it was just a reaction to the medication that would go away with time. After a week in the hospital, I was then sent to a rehab hospital to learn how to walk again. It never went away like they said, in fact it got worse.

Following up with specialists as I was told to, my neurologist did seem to know what was going on, two words I never heard before, so I kind of ignored them until the test results would come in. July 11, 2012, the day I will never forget. "You have Myasthenia Gravis... most people can live a fairly normal life but you’ll have to take medication every day." Wait a minute, a "fairly" normal life? Knock some more levels off that building I was constructing. My body continued to negatively react to medications and initially responded poorly to Mestinon. Unable to get in with the one MG specialist in town, I was at a stand still. Then after a weekend in the hot, Texas sun in October, I landed in the hospital again. This time they gave me IVIG and Prednisone. I could not tolerate the side effects from Prednisone and begged them every day to stop it; eventually I was weaned off. IVIG caused side effects as well, and didn't seem to help. Again, I was promised I would improve over time. After 6 weeks combined in a hospital and rehab hospital, I was barely any better.

That is when I decided I should probably get this thymectomy they talk of. Since Chicago has more healthcare options and my parents could take care of me through recovery, I opted to return to Chicago in January of this year. I again faced the questioning of if it is "just anxiety". Eventually, I went in for plasmapheresis in March of this year, which seemed to help, and days later in April had a robotic thymectomy. Once again I had high hopes, but another level of the building came down. My breathing was at it's worst and I insisted something was wrong but told it was just the effects of surgery. After being sent home, I returned to the ER to hear what I feared "You have a pulmonary embolism." With multiple clots in both lungs, I thought my life was over for a third time now.

Right now I am finishing up treatment for my PE, and in the process I have been diagnosed with something else called POTS- Postural Orthostatic Tachycardia Syndrome. It is a type of dysautonomia which affects just about everything- heart rate, blood pressure, digestion, respiratory, temperature, so on and so forth. So now I have one illness that affects the voluntary parts of my body and one that also affects involuntary. Many medications for POTS are on the “be cautious with” list for MG. My treatment is pretty much at a standstill as my body has become extremely sensitive to everything I put in it. I use a wheel chair for anything more than a short walk and there are days I feel like a prisoner in my own body. I have lost friends and even family members in the mist of all of this. More levels removed from the building.

With all that loss, it brings me down to the very bottom if my life were a building. By everything I just said, you would think I'm a very negative person and there is nowhere to go from here. However, oddly enough, right before my MG diagnosis, I came to know God, and with Him I have gained so much more than all of my losses combined. He transformed me into a positive person, and taught me to value every level of that building that could so easily and quickly be taken away. Though I am physically weak, I am spiritually strong. The building I was constructing no longer stands, but I know God is helping me build a new one now, a much better, taller, stronger one. My life is nothing like it used to be, but rather than thinking of myself as disabled, I like to think of myself as enabled…

My wheel chair is an extension of myself and I feel blessed to have it so I can get out including attending MG support groups and MG walks even if I can’t physically walk. When my legs don’t work, I use my arms and my eyes to connect with others over Facebook support groups or to write. When my arms and eyes don’t work either, I rest, listen to music and pray, waiting for inspiration for the next thing to write. In January, I started a blog with the purpose of one place family and friends could go to stay informed while I’m in and out of the hospital. Astonishingly, my blog took off, now having over 11,000 views, and I also started a second one. I’ve always had a passion for writing but never had the time. In addition, I design t-shirts and other items to bring awareness and any profit I’ve made I’ve donated to the MG community. Now I can do what I love while bringing awareness to a very rare disease. My new goal is to make Myasthenia Gravis a household name… so that one day none of us ever have to hear “but you look fine” or “it’s just anxiety” being sent home with our lives at risk as we struggle to breathe. At the same time, I do hope remission is in my future… and I will never forget what my neurologist told me when she first diagnosed me… “Miracles do happen.” 

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Relight the Spark

I'm passionate about writing, but lately I've lost that spark... the spark that ignites an idea into a story. Where did it go? Maybe the same place I did for a short while.

As you know if you've been reading along, I've been battling illness for 3.5 years now. First, the confusion, the brush off of anxiety, the scratch your head and make a face I have no idea what's going on with you so it must be in your head. Next, the circle of specialists, misdiagnosis after misdiagnosis, more medications than I can count which just made me worse. Then, the diagnosis, the relief of an answer, the plan of attack. On to, the surgery, the complication, another diagnosis and a stand still in treatment. Lastly, to where we are now, right where we began. What to do what to do? Nobody knows. Nothing works. So I'll take matters into my own hands, again.

Taking matters into my own hands has two arrows right here. I'll speak of one, for now, the one that relates to losing that spark.

I found out my insurance covers hypnosis. I've pondered trying this for a while. Nothing else has worked, why not try something really outside the box. Of course finding specialists in this are few and far between. Well, I found someone and I had my first appointment 2 weeks ago. I asked if she could please hypnotize me to be healthy. LOL I laughed at the thought but you know the mind-body connection really is something, so who knows. Now before you start thinking the wrong thing, do keep in mind both MG and POTS are real physical disabling conditions. You can't just positive think your way into being healthy. But she spoke of something about the cells in your body and how they change and such... past my understanding, but hey it's worth a try. And so try we did.

I didn't feel like I was hypnotized at the time. Not one bit. I felt like maybe I was drifting off to sleep with someone's voice in the background. Though she explained it's not like the "you are getting sleepy" hypnosis you picture with someone waving something in front of you. It's more of a mindful meditation. When we were driving home I noticed I was pausing in between talking. I gasped "oh my gosh maybe it did work! I remember her saying I would slow down my talking so I don't over-exert myself!" I'm a REALLY fast talker and then I have no breath left to talk at all. So I was like hmmm, ok...

This was right before going on that trip to visit my college. After that trip, about a week after being hypnotized, I looked back and thought "wow, I really did have a bit more energy/strength." Hmmm again...

But then something else happened.

I remembered being hypnotized she told me to think back to when I was healthy, when I had no health problems. Then she said some other things I can't remember I guess basically trying to get me to rewind to that state of being. Something like that.

Well, I think it worked... but I think it worked too well in the wrong way. Along with feeling like I had a bit more energy, just slightly closer to old me physically, old me came back in more ways than one.

When I say "old me" and "new me" I mean old me as in pre-June/July of last year and new me as in after that time onward. I say this because of the spiritual transformation which you may read more about on my other blog. "New me" is a much better person I think. New me is a Christian and striving to "walk the walk" and not just "talk the talk." New me knows God. Old me was healthy and energetic and not a bad person, but, I didn't know God.

So I thought, perhaps the hypnosis brought me back to old me but not in the way I wanted. Perhaps it brought me back mentally but barely physically. For a few days, I felt I completely lost my connection with God. It was a loss I've never felt before. I've spoken of so much that I've lost with people being the hardest loss. This was even greater. I felt the biggest part of me was gone.

I called out God where are you I need you, I can't do this alone! And then I realized, all this time... I've been asking God if He could please give me back my health, give me back the relationships lost, give me back this and that which has all come tumbling down atop me. But I wasn't doing as much as I should have been of "praising in the storm." I wasn't thanking Him for standing with me through the storm! I think He stepped aside for a few days to both remind me to value what I have, including Him, and more importantly to glorify Him in all good that I do because clearly He is my strength! Once I realized this, He returned! New me is back! Thank you God! He never actually left, He is always here with us, but I couldn't feel His presence for a couple days which seemed like eternity without Him! Well, along with His return came the worsening of my symptoms again. But it's ok.

I am going to see her again and try hypnosis again. I'm guessing it's not really a one time thing. But I'm going to tell her what happened and hope we can figure out a way to keep it from happening again. I still VERY much want to be healthy and more than that want not to lose relationships in my life. However, what this has made me realize is something I never thought about before... I'd rather be unhealthy and have God than healthy and without Him. Hopefully I don't have to choose one or the other, but what I will choose is making certain I keep Him first for I know He will bless me if I do.

in all your ways submit to him,
    and he will make your paths straight. Proverbs 3:6

But seek first his kingdom and his righteousness, and all these things will be given to you as well. Matthew 6:33

Next time, I will speak of that other arrow... the other way I am taking matters into my own hands... and God's hands of course.

Month of Thanksgiving

It's November... it's the month of thanksgiving. Let's this month not only be thankful for what we have, but let's give the best we have. Which brings me to this.

Mother Teresa's Anyway Poem:

People are often unreasonable, illogical and self centered;
Forgive them anyway.

If you are kind, people may accuse you of selfish, ulterior motives;
Be kind anyway.

If you are successful, you will win some false friends and some true enemies;
Succeed anyway.

If you are honest and frank, people may cheat you;
Be honest and frank anyway.

What you spend years building, someone could destroy overnight;
Build anyway.

If you find serenity and happiness, they may be jealous;
Be happy anyway.

The good you do today, people will often forget tomorrow;
Do good anyway.

Give the world the best you have, and it may never be enough;
Give the world the best you've got anyway.

You see, in the final analysis, it is between you and your God;
It was never between you and them anyway.

Cabin Fever!

Wow, it's been so long since I last wrote! So sorry for that! I've been busy and then tired and then busy and then tired... but hey, aren't we all? I am so not in writing mode right now so if this is a little off, sorry again.

Guess what I did the past couple days? I got out!! LOL And not just out, but away! Just because I can't do much doesn't mean I don't want to.

I've been concerned about any longer trips as the whole blood clot risk as well as I can't stay in any one position for a long period of time, especially if not laying down. But I talked with my doctors, and I had the whole back seat to put my legs up (which helps tremendously!) and off we went!

First stop, to get my teeth cleaned lol. If anyone needs a good dentist in Peoria or Bloomington, let me know. My uncle and everyone in his office are awesome!!

Second stop, Avantis! Oh yes how I missed you cheap but delicious Italian food.

Third stop, the burg to rest for the night. It helped to have a few stops to break up what would be a longer trip. I went down to the pool thinking I could do some aquatic therapy on my own since I had to skip this week. Oh my goodness, warmest pool ever! I used to love that but now heat is bad for both MG and POTS so it was just a quick dip for me. Customer appreciation week at the hotel- chips, popcorn and CHOCOLATE! Score!

And then what I've been wanting to do for years... visiting my college! My dad was asked to do some sort of class thing so my mom and I went just for fun. The plan was to wheel chair around the whole campus to see all the new stuff they have done, but thank you to the rain that didn't happen. However, rain didn't stop us. Fortunately, every building we drove up to we found a parking spot right there in front! So I got to see the new academic building which (yay!) has an elevator! I learned just how not accessible my college really was... you never think about that when you are able bodied. Then stopped for a delicious sandwich that I have oh so missed. On to the bookstore to visit the lady we knew there and see what fun stuff they're selling.

Yikes, after all that I was burnt out. But, I had planned to see my favorite professors so we headed over early so I could get a little rest break. All 4 of my communication/PR professors came over to visit. It was so great catching up with them and sharing some pretty funny stories! At the same time my mom was visiting with one of her college friends, so after my professors had to leave for class I went and visited with her too. So nice to see her even if it was a short hello.

We then drove around campus about to leave but decided to knock on the house of my sorority that wasn't there when I was there so we got to see that, drive past the oh so memorable frat houses and football field, with one last stop at Shopko! LOL Hey I couldn't go to that town without stopping there. Thank God for wheel chairs.

And the next morning we headed out. Short but sweet visit... and I made it!! The most difficult/tiring thing was the packing and unpacking. My arms, shoulders, back and chest are burnt out... and what am I doing? Typing to continue using all those same muscles. Smart ay? haha I promise after this I'll rest up. I have all weekend until the craziness of appointments starts again.

I thought going back would make me wish I were living in that town or back in college... but it didn't really. Now I feel it's a great place to visit, but I don't think I could live there. What it did make me miss is being healthy. It made me realize how very much I have cabin fever! I want to get out, travel, explore, be active again! I want to just do whatever comes my way and go wherever life takes me! But, I am limited within the confinement of this thing called an unhealthy body. I still have hope. I still look forward to the day when I can wake up, bounce out of bed and go for a run. Who knows, that day COULD be tomorrow!

After this visit I thought of how to describe my illness again since my "looking fine" is very deceiving. So it's like this, imagine a battery that isn't fully charged. It doesn't last as long if you don't charge it all the way right? So imagine that I'm that battery always running on like 1/4 a charge. I like to say I can do almost anything, just like a battery can, but I just don't last long before needing to be charged up again aka rest. That's why I look just like anyone else but I quickly run out of energy before everyone else.

With that said, I'm feeling very nomadic... lot's of cabin fever! So, Lord, please grant me better health so I can get out and about more. I promise to do Your will, whatever it is, but I want to spread it further than through written word. Let me spread the love through action. Let me travel and visit and experience and live. Amen!