Money Making Industry

I'm sick of it. That's right, I am absolutely 100% sick of it. I'm referring to the healthcare industry.

I'm sure there are still some doctors out there who's true intent and passion is to help the patient, to heal, to better the lives of others. But from what I've seen and experienced those doctors are especially few and far between.

I went through this in Texas, and I'm going through this again in Illinois. Sent around- doctor to doctor to doctor. What do they do for you? Nothing. What can you do for someone with so many health issues who doesn't respond well to treatment? Nothing. And yet I'm forced to go because if I don't I get marked down as someone who doesn't follow their worthless advice and "treatment"... as non-compliant. And then when I get in an emergent situation, they see that and write me off as anxiety and don't take me seriously. It's absolutely ridiculous.

And after every one of these worthless visits or incorrect tests, I'm sent a bill, typically quite large. Bill after bill after bill. And who wants to help you then? No one.

I just received a bill from a doctor which I spent probably 15 minutes with and absolutely NOTHING was accomplished... prior to insurance negotiated rate would have been about $360... even with insurance negotiated rate my portion is about $250. $250 for 15 minutes. Are you kidding me? That's $1000 an hour. For nothing. Absolutely nothing. Other than to pay back their student loans of going through medical school. Seems like a can of bonus nonsense to me.

So I'm forced to spend money, and more money, and more money... for what? I feel like I am just flushing it down the toilet to be honest. Like I said, nothing gets accomplished at these visits. These treatments and medications don't help. If anything it all makes me worse- so then what? So then I can spend more money.

It seems it is ALL about the money. Not about the patient's well being. It's an industry after all, a money making industry. The doctors, the pharmaceutical companies, and you can throw a few other sectors in there as well but I won't go off on that right now because that will get me really revved up.

If you have the money you can do this day in and day out, no big deal, other than your time and your health that's already messed up of course. If you have absolutely no money or legal documentation then what happens? You get it all written off. Free healthcare. So what happens to those that fall in the middle? Those like me. Those who worked up until the point that they couldn't anymore even though they still want to work. Those who really do need the help but aren't given it. Those who get punished for saving a little bit of money and then all that savings goes towards medical bills. Those who spend everything they have on healthcare and typically are financially supported by others otherwise because they just can't do it, they can't work. That's the real financial hardship. And why aren't we helped?

This is why time and time again I say I'm done. I'm done with it all. I'm done going to doctors. I'm done taking medication that has more side effects than I have symptoms. I'm done undergoing testing just to put more money in the pockets of the healthcare industry. It's the industry of medicine, not the industry of healing, and medicine costs and makes money. Out of my pocket, into theirs. So that they can live awesome lives with great vacations while I continue to suffer unable to even drive myself somewhere. Why bother to have nothing accomplished? Why not take what little money I have and somehow physically take myself on vacation? Spend it on what I enjoy? Do things that matter. Give back to others. I don't know how physically but there's got to be a way... and it won't involve placing more money into the hands that those that have more than enough from doing less than enough.

In the end we're all only given so much time to live and none of us know how long that time is, even if at some point were given an estimation. And typically if we're given an estimation and we have the energy to, we go and live, really LIVE. Why do we wait to start living until we start dying? I want to start living now. I'm done with doctors and testing and medication. I'm done with poisoning my body to fall closer towards that end point. I'm done with throwing my money at those who don't need it. I'm done with focusing on what to do to prevent nearing death, and start focusing on living the days that I have. Every day is a blessing and right now all I have is this one. And if it were to be my last I certainly don't want to spend it sitting in a hospital wasting my time and money to pretend we're helping my body when really we're not.

And so I digress and unfortunately remember I have 2 tests tomorrow. I don't want to go. I absolutely do not want to go. What is the point? If it turns out to be something serious then I have to go through even more stuff and put more money in their pockets for the slight chance that it could maybe better my life in some way. And if it turns out to be nothing, they still get my money for performing those tests just to tell me nothing new. Doctors should get paid according to how well they do- heal me- I'll give you pretty much everything I've got. Cause me nothing but more problems, and you pay me for those additional problems. Yet then probably no one would go into that industry, because you know, who wants to take responsibility for their work anymore in this ridiculous modern society we live in?

Please pray for healing- body, mind and soul- not just for me but for this nation.

Rare and Wavering

Please continue to hold me in prayer... I'm not ready to post what is going on regarding my health. With that said I'm going to continue with a post as I otherwise would.

Myasthenia Gravis is unlike so many other illnesses we know of. Not only is it rare in being known but it is rare in the way the symptoms affect us. This is another reason why it's SO important to get the word out about MG. Our illness is often invisible, but just because you can't see it doesn't mean it's not happening.

Myasthenia Gravis can get worse with time, it CAN. But it doesn't seem to be a proven thing, just something that happens to a lot of us. A lot of other illnesses, you decline over time... you get worse and worse and worse. Other illnesses remain fairly stable, and then perhaps you get cured or at least remission. Myasthenia Gravis is different.

Myasthenia Gravis is not steady. It is not stable. It is not predictable. It is not constant.
It is not a walk up a hill, so to speak as the illness gets worse and worse, and then a walk back down, getting better and better.

Myasthenia Gravis is ever changing! Every patient is different. Every day is different. Heck, every minute can be different! I always wanted to be unique and boy am I ever with this one. Myasthenia Gravis is not only difficult to spell and to say (My-uh-stin-eee-uh Grav-is), it is difficult to put your finger on all together. Spontaneity at it's finest... or shall I say at it's worst. As if life weren't spiced up enough.

What I'm getting at is this... It is super important that family, friends, acquaintances and hows about the entire world, know this, understand this, attempt to accept this, and support us through this.

A Myasthenia Gravis patient often encounters the following, all of which are examples from my own life:

• Being asked if we're doing better- Even if we are, it's bound to change tomorrow, or maybe even in the next few minutes.
• Being told we look great- Thank you, but our looks (unless we are in or nearing crisis) often have nothing to do with how we feel or how the disease is affecting us.
• Seeing us out and assuming we are "fine"- Often we have to "prep" for even a quick trip to a convenience store which means resting for hours or sometimes days in advance and afterwards. We have to take our meds at just the right timing to allow for enough "muscle time" to do whatever we want to do. This very quick moment of time you see us in not a reflection of how we are doing in general, but only a glimpse into a "good" hour or day for us. It does not last and we try to make the most of every one of those moments we have. 
• Hearing we are doing "good" and assuming then everything is A-ok- Our "good" is no where near your good. Most of us can't even remember what good really feels like anymore, and so if we are able to do a few tasks in a day, we consider it a good day. Trust us, we wish it could be much much better, but we make do with what we have and try to remain positive, and thus sometimes it is "good."
• Being questioned on why we aren't working when it seems like we can do just fine for ourselves- Inconsistent. Unreliable. Ever changing. Decline after decline after decline. Questionable. Unknown. Would you hire someone with those words as being most descriptive of their work? I wouldn't either. That is not who WE are. That is what our bodies do. We can not last long enough to make it through even part of a work day. Even when we have good days or good moments, we never know when they will come and how long they will last. So many of us try to find things to do, occasionally that might make a little bit of money but typically not- like writing, designing, selling things. Anything we can do on our own time, time that takes much longer to do everything in because of MG, knowing that at any point that "work" could come to a sudden and complete stop due to MG. 
• Thinking we have so much time on our hands why can't we make more time to see family/friends- Personally, I have on average 2 doctor visits or something to do with my health (imaging, testing, physical therapy, etc) every week. And then I try to plan one other thing to do per week whether that be getting to a store (no not browsing the mall like I used to pre-MG but rather a quick visit to a grocery store or something for essentials) or occasionally try to visit with someone. Right now I need at least one day in between any day out- "out" meaning including doctor visits. I need a lot of rest breaks not just throughout each day but throughout each week. So yeah, my calendar is pretty set in advance and finding days to get together with people is difficult. I understand you can't completely understand this because its not a "normal" thing for people to do, but it's something we with MG often HAVE to do. We don't have a choice. We definitely appreciate empathy, not sympathy, but empathy. We want to see you, it's just not that easy.
• Being given looks or even being yelled at by a stranger for using a handicap placard/parking space- Here is a prime example of why we need this even if we can bounce out of the car on the way in. We only have so much "battery power" in us and we need to make the most of that. Parking as close as possible will allow us to use that battery power to walk inside the store instead of use a wheel chair. Today I did just that. Before being able to finish I ran out of "battery power" and MG hit me hard. I found a seat and rested. And then I really had to drag myself to make it back to that handicap spot, the first spot in the lot. You can't see how low the battery is in a flashlight until there are some signs that it's about to die. And then its dead and the flashlight doesn't work. We can't let ourselves get to that point or that means hospitalization and possible breathing tube.

The key point here is you can't base how we are doing off of looks or off of how we are doing at any given point in time. Basically you have to take every single day out of say a few month's time, add them all up, and average them out. Then, how are we doing? Very different from that split second you saw us all peppy right before the crash and hours in bed you did not see. Trust us, if we go into remission, we will yell it from the rooftops letting all family, friends and most likely even strangers know it! I myself will probably go back into event planning mode and plan a party. But until then, just take our word for it, and realize we are CONSTANTLY living with something that is not constant. Confusing? Yes. Impossible? No.

My arms are very tired today and I am really pushing myself through these last paragraphs. So I need to stop and I need to rest. How long? I don't know. Do I look fine? Absolutely. If I continue pushing it will the arm weakness start hitting my diaphragm? Probably. Is this starting to make sense now? I know it's confusing. But please just take our word for it. A rare disease with a rare way of presenting itself. It's very difficult and we certainly don't need it more difficult with people questioning us. So please spread the word. Get MG awareness out there!

Thank you.

Finding strength to go on

Well everyone, I may have just been handed one more thing, a very serious, hard thing. I'm not going to say what that is until I know for sure. But please, if you will, pray for me going through this right now. I would really appreciate it.

Yesterday was tough. You know sometimes you just have a day where everything seems to go wrong? That was my yesterday. Towards the end of the day I literally said out loud "I quit." I said I can't do this. How much can one person handle? This is too much. I'm going to break.

Today I woke up and was reminded of something...

I was right, I can't do this. I can't.

But God can. Sometimes I go to a random page in the Bible and read. This morning what I flipped to was Philippians 4:13: I can do all things through Christ who strengthens me. I thought that was a great reminder as that is "my" verse, the one I hang on my wall, the one I strive to live by as times get so tough.

And then I read one of my daily devotional emails. What did it talk about? Philippians 4:13: I can do all things through Christ who strengthens me.

And then I read the other one of my daily devotional emails. What did it talk about? Philippians 4:13: I can do all things through Christ who strengthens me.

Wow. Definitely a God thing. He is reminding me that no, I cannot do any of this. However, with His strength, I not only can I, but I will! He is reminding me that I have the ability to tap into His strength at any moment in time. He is always there.

Every time I think I'm at the top of the hill and it can't get any harder or I can't climb any further, the hill grows... at this point it's a mountain. I hope and pray every day to finally start moving back down, in other words, for things to get easier for me. But life isn't one hill... it's hill after hill after hill and a few mountains thrown in there too. No doubt I'll have more that come my way. No doubt at times I won't even be able to see the top and it will seem never ending. But with His strength I can keep on. I can do it.

I can do all things through Christ who strengthens me. Philippians 4:13
And you can too.

Playing the card you're dealt

God is so good, so so so good. I just had to say that. Don't stop reading because of it.

I came upon an article today that I just absolutely love. I read a lot and I like quite a few things, but this one REALLY pulled me in. Not only did it provide hope but so much inspiration. I am told by others that I am an inspiration to them and to be completely honest, it shocks me, and it humbles me. Me? Someone who has so much piled on that at times I don't see the way out. Me. And then I read this article and I kind of understood. We all have the ability to inspire and lead and provide hope to others. Take what you are given and make the most of it. Make the absolute most of it!

Life has dealt me an unusual, unexpected bit of cards, and well they just keep on coming. But are those cards going to cause me to toss them all in and call it quits? Quite the opposite in fact. A deck of cards is 52. If I've received about 20 bad ones, think how many good ones are still out there? I've got to keep playing! I've got to keep on pushing along! Those good cards are coming and they're just right around the corner, I can feel it.

It's not about my wants, or your wants, or anyone's wants. It's about God. When you place your heart, your mind and your focus on Him, He will restore you! He will take care of you! He will provide for you!

God is so so good and I am so blessed. Glory be to Him!

Oh and here is the article, a definite recommended read.
http://www.wvgazette.com/Life/201402080013#.UvfVD2Nu7IM.facebook

Coping without a cure

Two posts ago, (suggested read here) I talked about why treatment for MG, POTS or anything else is so complicated with me, thus pretty much at a constant stand still. So what can I do, if anything, on my own, to help myself?

There are a lot of things I can't do. I could go on and on and on. But, let's be positive here. What CAN I do? What is under my control for the most part?

One, I can try to keep a positive attitude, surround myself with positive people and teach others about this. That's pretty much a given. What else can I do? Well, what are people told to do in regards to health? Exercise and eat healthy. Because of MG, I really cannot exercise in the normal sense. So that leaves one left. Eat healthy.

Do not take this the wrong way. I am not saying eating healthy will cure you. The illnesses I have are very real. There is no known cure. But what I also know is this: the more unhealthy I eat, the worse my symptoms are. So I just have to believe eating healthy is going to be beneficial, whether or not my symptoms improve any.

Disclaimer- do not take anything I'm about to say as medical advice. This is my own personal experience and everyone is different. Talk to you doctor or healthcare professional before making any changes in diet, exercise, medications, supplements or otherwise. Thank you.

Growing up, I was no where near being the healthiest eater. I was "healthy" and active, I exercised or played sports, but my food intake could have been much improved upon. I was a very picky eater which made it very difficult. I liked grilled cheese, mac and cheese, chicken nuggets, pizza, cheese burgers and brussel sprouts (haha my one healthy!). I occasionally drank soda/pop/coke (whatever part of the country you live in :) ). In the more recent years I drank wine, beer, and sometimes mixed drinks. I ate a lot of carbs and many more sweets than I should have. It seems everywhere you go someone is offering sweets! Dessert is not an every day thing! And yet somehow it became one.

Over the past year I eliminated dairy, yeast, sugar, processed/junk/fast food as much as possible. That's a whole lot of things to eliminate especially when society fills you with garbage food that has all of this in it. This is what my typical day looks like now...

Breakfast: I have to have a banana every morning. If there aren't any I drink orange juice but I can feel the difference. I need to keep my potassium level up and it drops quickly with slight changes. I also usually eat some type of bar. My favorite right now is the "Raw" bar... raw ingredients of nuts, fruits, vegetable, non-gmo organic. And no I'm not getting paid to advertise for them, but I should be haha. I can't seem to give up my coffee but I have attempted to switch most days to decaf instead of regular because caffeine seems to negatively affect me.

Morning snack: An hour or two later I'm hungry again and usually eat either a salad or have a green drink (fruits and veggies).

Lunch: Well the burger hasn't gone away, in fact it's increased. I can't seem to go a day without beef... not because of a craving though. Apparently I need to maintain my protein level also and beans and peanuts don't seem to do it all the way. It's something about a burger that makes my body feel better, no joke. I have changed it up though. I eat organic, grass-fed, antibiotic-free beef on yeast free bread, no cheese, with as many veggies as I have around to use. That fills me up pretty well.

Afternoon snack: sometimes an apple, or nuts, or beans or kiwi or something salty because I need to keep my sodium level up due to my blood pressure drops. I also at some point during the day drink coconut water or G2. I know G2 isn't the healthiest but coconut water gets expensive drinking it every day. This again provides sodium, potassium, and quicker hydration than plain water.

Dinner: This is where the variety comes in... chicken, steak, tacos, turkey, veggie stew, beef stew, even sometimes fish!! gasp! (if you know my eating habits you know I never ate any sort of sea food). Sides of veggies typically greens- green beans, brussel sprouts (my childhood love continues), peas, zucchini, cabbage, etc.

I no longer drink pop/soda except for an occasional Zevia (sweetened with natural stevia) but even that makes my symptoms worse. I no longer drink any alcohol- non-drinker for about a year now! I rarely eat lots of carbs and almost never eat sweets (I can't seem to give up occasional chocolate though!) Every other day I drink green tea and on alternate days I drink a fiber drink. I am constantly drinking water, sometimes with lemon in it... no joke I must drink about 2 gallons a day, maybe more! (it's a POTS thing). I also add garlic and salt... garlic as a natural anti-everything bad and salt again because of the bp drops.

In addition to food I supplement with vitamin c, vitmain d, vit b2, probiotics, digestive enzymes, flaxseed oil (I can't tolerate fish oil), and licorice. I take manganese for MG weakness, about once a week on average. And I take garlic or oil of oregano when I feel myself starting to get "sick"- "sick" as in how healthy people know it as.

If I eat this way, I tend to feel better and be able to do more... no where near what I felt like prior to getting sick, but at least doable to make it through the day. And then I get my 8-9 hours rest and start it all over again. I keep that in mind every time I see family or friends eating pizza and I find it so difficult to resist. But I've also learned, the longer you resist, the less the craving will be. Sweets have been what I've stayed away from the longest at this point. Now, I have no desire for sweets at all (again- except chocolate- that should pretty much be it's own food group haha). What I also found is that when I'm craving something now, it's usually much healthier and I feel better after I eat it. What I concluded (without research so pretty much just a guess) is that that means my body needs that specific nutrient/vitamin. For example if I'm craving beef, I need protein. If I'm craving a banana, I need potassium. If I'm craving peanuts, I need sodium. Etc. Listen to your body, it really does speak to you. Furthermore, if you don't think what you typically eat negatively affects you, try eating as healthy as possible as I suggested above for say a month, and then go back and eat what you used to eat. I can almost guarantee you'll feel a difference. (Of course again talk to your doctor first!) The first month is the big hurdle. Get over that and you're going to be on a good path to better eating in your future.

I think this is how we were designed to work... not to take in all the chemically altered/processed garbage we mistakenly call food. I could go off on an extremely long tangent on that one, but I'll refrain. What I will say is that society focuses too much on treating/fixing a problem after it's already there, rather than trying to avoid getting there in the first place- in every area of life. So if I look at this as if I want to avoid my health getting worse, what can I do? Back to the basics.

If there is any chance at a cure, I believe that's it.