News flash: The medical community is incompetent. Doctors don't know everything. Hell, they barely know ANYTHING. God forbid, one day....you get sick. I mean, really sick. Mysteriously sick. Inexplicably sick. Where would you end up? Who can cure you? Or maybe better yet.....Who would believe you? As surprising at it might be to y'all; that is really the million dollar question.
Primarily, if you're a woman who happens to be of "child bearing age", slightly or significantly overweight and have ANY stress in your life, you can bet that if you have to go to the doctor for ANY reason, your diagnosis will be this-----"lose some weight and take this anti-depressant". Plain and simple. Yes, I did just save you thousands of dollars and tons of painful procedures. Not to mention the time and expense and EMBARRASSMENT of having to see a doctor in the first place. But, what did I really do to you? Did I listen to you? Did I demean you? Did I ignore you? Did I oversimplify your life? Your circumstance? Did I destroy a piece of you? Did I take away your last, best hope of getting well? Yes. Yes, I did.
Here's a bit of "my story". I woke up one day and felt 'off'. No more, no less. Just off. You know the feeling; a bit fatigued, a bit achy, a bit of this a bit of that. I thought that I was getting the flu or an upper respiratory infection, because I was having some trouble breathing. I took it a bit easy and did some chores, drank a cup of coffee, took a shower and then decided to eat some lunch and maybe take a nap. I remember it like it was yesterday......I had made a sandwich, sat down on the sofa and took a bite. When I tried to swallow, I couldn't. I couldn't get the bite down. Hm? I had a glass of water, so I took a big gulp and forced it down. Thinking it was just a 'dry throat', I took another bite. This one was even harder to get down. Odd. My throat wasn't sore, just..... 'swollen'. I called my husband to see if he could think of anything that I had done that would cause a swollen throat. When I tried to talk to him, speaking for the first time all day, I didn't recognize my own voice. I sounded like a hearing impaired person. I sounded like someone who had been born deaf and had learned to speak in spite of it. Crazy. Once my husband figured out that it really was me on the phone, I tried to explain what was happening. Bordering on impossible. Combine my "new" voice with the bizarre symptoms and I FELT crazy. I didn't need anyone to make that OBVIOUS assessment. This WAS crazy.
As each new day dawned, I got worse. I ended up being unable to get out of bed for more than a few hours at a time. Perfect for a stay at home mom. NOT! I started having more and more trouble breathing, walking, speaking, eating, holding my own urine and maintaining my body temperature. I would run high fevers for days and weeks on end, without relief from OTC medication. I would become so fatigued from just ordinary, basic things. I couldn't take my girls to the mall or the pool or the zoo. When I would force myself to do these things, I would "pay for it" for days to follow. My friends couldn't understand why I couldn't do all of the things that I had been able to do, just weeks prior. I had been placed on steroids, in an attempt to open up my airway. Perfect for a woman who's already heavy. But, I was willing to do anything. Take anything in order to feel better. I was tossed from one "ologist" to another with little regard for the emotional or financial implications.
I was diagnosed by the "best of the best" in "their field" with several life altering, and sometimes ending. conditions. I was treated for these diseases and usually had some level of improvement. Not ever 100%, but, I always felt a bit more normal. That is in every way but MENTALLY.
I had been drug through the mud by these "wonderful" doctors, along the way. I had lost friends on this journey, because they couldn't stand the diagnosis and MIS-diagnosis. I think that they thought that I was somehow lying to them when I told them "Today I have Condition A and then tomorrow it was "Well, now they think that it's Condition B." I'm not an idiot. I know how that must have sounded. However, make no mistake I WAS DIAGNOSED A LOT!!! At what point, was that EVER my fault? My doing? MY lie? Wasn't I being lied to? When did I ever WANT to be sick? Oh yeah....fucking never! Not one day of it. Yet, somehow, we blame the patient for the medical communities inability to come to a correct, if not a reasonably so, conclusion. Somewhere along the way, I became a villain. I became a freak. A pariah. Being forced to go from one specialist to another made me appear, to the medical world and to MY world, like I was desperately seeking attention. When, in fact, I just wanted to feel better.
Imagine if you can, not having one supporter in the world. All the while you're quite certain that you're slowly dying. You've never felt sicker; or been more alone. THAT is what happens to someone when they have a rare medical condition or worse.....several medical conditions. See, the medical world wants us all to believe that we all fit into these neat little categories and----if you're REALLY sick, well, by God they're GOING to find that illness and make it all go away. Total. Complete. Bullshit. I was utterly alone. Utterly sick. At my wits end. My "friends" were few and far between and even the ones who were there, talked badly about me behind my back. Throwing around accusations and nasty comments, like I would be none the wiser. Again, I'm not an idiot. I'm also quite sure that somewhere in "my permanent medical record" were terms like "hypochondriac" or "severely depressed", etc. How sabotaging is that? Once a doctor reads the previous doctors notes, they have little time or interest in making a "real" diagnosis. The patient is eternally screwed!!! I was an island. Persistently ignored and laughed at. Constantly, alone and isolated and really, truly sick. Terrifying.
I waited. Patiently and impatiently for someone, anyone to hear me. To see me. To acknowledge that something was wrong with me. Now, don't get me wrong, I had dozens of tests that showed abnormalities. I clearly had a heart condition. Not life threatening or surgical, so I was dismissed by the cardiologist. I clearly had brain lesions, but, not "enough" of them for the neurologists to diagnose me with MS. Even, though it runs in my family. I had several blood "anomalies"; too much of this hormone or chemical, not enough of another, crazy high level of "fighting" white blood cells. Again, nothing diagnostically "high" or "low" enough. Clearly a war was being fought inside of me, yet no one knew who was fighting or what they were fighting for!! Frustrating.
After years and thousands upon thousands of dollars, I gave up. Yep. I had lost everything. My friends, my self respect, my savings, the respect of anyone who knew me, my credibility with anyone with an M.D. after their name and eventually, I too, questioned my sanity. I prayed that I was just crazy. I had taken every anti-depressant known to man. No success. I just-----stopped. I just ceased the search. I didn't care anymore. I prayed for death. At least it would be over then. Horrible.
Months passed by and nothing changed. Then, the phone rang and my doctor of a decade was on the other end. He had noticed a result on one of my blood tests that could hold the key to it all. It was a simple (okay, NOT so simple) vitamin deficiency. He thought that if I started taking injections, that I might see some improvement. I jumped at the chance. I started injecting myself right away and within a few days, I noticed some improvement. I could swallow better. I could think more clearly. I wasn't as exhausted. And slowly but surely, I did improve. Now, some damage has already been done and I will never be 100% again, but, I did become more "myself" than I had been in several years. Life altering!
Once these "odd" symptoms were dealt with I was still left with other things, but, these things were more clear and easier to diagnose. I wasn't viewed as a crazy lady anymore. Funny. I'm still of "child bearing age, over weight and yes, even a woman", yet, I'm SEEN now. I'm no longer invisible. I am, however, several friends lighter. I am, however, more careful about whom I share my troubles with. I too, don't let the world tell me that there's "nothing wrong", when I know for damn sure that there is. Funny thing. Had this vitamin deficiency not been treated, I would have gotten my wish. I would have died. No more. No less. Hm? What's the moral of my story, you might ask..............
Be careful with yourself. Be careful with your friends and family. Listen to yourself. Listen (and believe) your friends. God forbid, one of those bitchy ex-freinds of mine, ever become "undiagnosably" (new word of the day.....well, it SHOULD be a word) ill. Who'll be there for them? Who'll be there for you?
Take a deep breath......it's just another day in Perfect!!!
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