This is not a rant or a call to action. It is not a request for symapthy or pity (except perhaps for my friends and family, and most especially my girlfriend and for the pain it has caused them). It is just the story of one person's struggle with health and the "greatest healthcare system in the world".
I am about to celebrate my third anniversary of no health insurance hopefully by getting some health insurance. I currently endure "moderate to severe" hemmoragic psoriasis, psoriatic arthristis, and most probably undiagnosed Addison's Disease. (This is what my last endochrinologist was leaning toward when I left my last stint with health coverage 3 years ago) If only the term "pre-exsisting condition" did not apply.
I am by no means in as poor a condition as many and my tribulations do seem trivial to me in contrast to the stark world we now live in. But I think people should know that one does not have to live without opportunity or just palin bad luck to suffer the indiginties of failing health with no recourse.
The first 21 years of my life, I was a military brat. Healthcare on demand as long as no one in uniform is in front of you. Although even before the slash and burn policies towards military healthcare, it was far from being treated at Mt. Sinai. I often joke about not knowing what novacaine was until I went to the first dentist that didn't have a rank. I guess the story should begin with my first misdiagnosis around the age of 7.
They told me I had asthma. It was classified as mild and this was in the days before inhalers were regularly handed out. It wasn't until around 10 or 11 that "they" decided it was an asthmatic reaction to allergies. Let me tell you, there is nothing like getting allergy shots twice a week for severl years as a child. This was durring the first time my family lived off base in my life. We were about 25 miles away and twice a week my dear mother carted me kicking and screaming, in a purely metaphorical sense - I knew better, out to the base to get my shots. It would be easier to list the things I was not allergic to than what I was, though thankfully there were no food allergies, which I believe are the bigest pain the ass allergy you can have. Many of my allergies were mild - cats, dogs, grasses, different trees, etc - but some were severe - horses for example, but back to the narrative. Twice a week I would go to the hospital on base, get a shot in my arm, and then have to stay for 2.5 hours to assure there was no adverse reaction. The "not" adverse reaction was usually some signifigant adema and what felt like my older brother had punched the shit out of my arm. This went on for several years. That's 40% of the time I would normally be a care-free child playing after school spent sitting in pain in a lame military hospital hoping the shots didn't sent me into anaphylaptic shock. Fortunately, this condition seemed to ease with puberty, and by 14 I no longer had to endure the shots. Now let's skip ahead a few years.
I was about 25 when the psoriasis fisrt reared its ugly head. If you knew me, that might sound snarky since my head is one of the places my psoriasis is so rampant, but I digress. I remember the day a doctor told me what it was and handed me a pamphlet. One of the first bullet points was "What causes psoriasis?" The first line follwing that point was: We don't know. "Fucking great!", I thought to myself, "this bodes well for me." At the time I had health coverage, and the psoriasis was mild so no skin off my back. No really, it wasn't on my back - yet. Ok, I admit, that was bad, but don't begrude me a little cheesiness, its one of my better qualities. As my psoriasis worsened and I sought out another dermatologist, new treatments were coming down the pipe. I was one of the first patients to be approved for Enbrel for psoriasis. It was originaly developed to fight juvenile rhumatiod arthritis. "Great!" you may say, but you would be wrong. At the time I thought my health coverage was fair to good, and it was, as long as you stayed healthy enough to not need some new drug that big pharma saw as a money maker. The prescription coverage I had at the time was what I have heard called "shoebox" coverage. This is where you get reimbursed for your prescription costs after you pay the big bucks out of your own pocket. When Enbrll was first approved for psoriasis, it was going to cost me about $1,400 a month up front, of which I could get about 70% back each time I filed for reimbursement. I was making about $24K at the time, so no go for me. I ended up taking another immunosuppresant called Neoral for which I had to get weekly bloodtests to monitor for liver damage - what fun! It wasn't exactly cheap either, but cheaper than Enbrel. After several months, it seemed to be working finally, but I started getting the flu and bronchitis and respiratory infections every time someone sneezed so I went back to the hit and miss of topical medications that work for awhile and then don't sending you back to the "trial and error" method to find a new drug. As I said before, I was one of the first patients to get approved for Enbrel, when I was going to have to pay myself. Then something cool actually happened. And this was when most companies were cutting health benefits, my employer changed plans and prescritons were going to be covered. Regardless of the price, the most I would have to shell out was $50/month. But with a different plan, I had to get reapproved by Blue Cross. And wouldn't you know it, I waited 2.5 years for that reapproval before I lost my coverage when I left that company. In the midst of all this, new problems arose. Moving on...
Soon after I stopped taking immunosuppresants, I got mono. Let me tell you, I know mono is a bitch as a teenager, but you DO NOT want to get it as an adult. This part of the story is not about mono though, it is about severe sleep apnea. Ha, I fooled ya, didn't I? I apparently had always had mild sleep apnea, but along with the mono came a severe bout with tonsilitis which turned my mild apnea to severe and ushered me into the wonderful world of nacrolepsy. I would fall alseep mid-sentence, with clients no less and soon fell asleep driving back from an out of town meeting at about 70 mph on I-65. Luckily, for me, not the other dirver, I hit a car as opposed to drfiting across the median into oncoming traffic and woke up. Nothing damaged except the vehicles and my insurance premiums, but terrifing nonetheless. This led to immediate sleep studies and major surgery from which I am sure I still owe someone somewhere some money - I gave up on my credit score long ago. I am a cash man these days. The surgery entailed total sinus reconstruction (ok, that was mostly from several broken noses in my "misspent youth" but hey, while you're in there doc....), removal of my tonsils and adanoids, and sewing that thing that hangs down in the back of your throat into the roof of my mouth. The recovery from this surgery is a bitch. The inside of my head and throat was strung up like so many mangled tennis rackets. This has a profound effect on one's diet as you might imagine, which leads us to the kidney stone episode(s).
Several months after recovering from the surgery, I woke up one day and swore someone had stabbed me in the back and the knife must still be there. A few hours of pain later which I can only describe as indescribable, my doctor told me that this was most likely a result of the drastic dietary changes from my previous surgey - the gift that keeps on giving. He also mentioned that it would probably happen again and he was right. Good for him - the bastard. The second episode I decided to deal with at home after enduring an IPV treatment (lying on an x-ray table after having radioactive dye pumped into my kidneys getting juiced with x-rays ever 30 seconds or so for about an hour) the first time and not being offered anything for the pain until the stone had literaly passed. So I gave it the good old college try and walked it off like a true american macho man. Literally, I walked around my back yard chain smoking and cursing for about 2 hours until the stone passed. I'm sure it would have been at least mildly entertaining for anyone who may have been watching thinking that perhaps they were getting a rare glimpse of a mental breakdown in progress or the begining of a psychotic break. That, thankfully, was my last experience to date with kidney stones, which I highly unrecommend. This is around the time I realized something else was going on with me.
I had been suffering from, for lack of a less appropriate term, morning sickness for about a year, which was a supposed effect of the severe apnea, but here I was with that problem solved yet the morning yack was still prevalent. Then the abdominal pains started. I would say about 6.5 on the kidney stone pain scale, which I now rate all pain by. I got passed from this docotor to that doctor and guessed at by the best of them. My endochrinologist once called me his "science project" during the 8 or 9 months we tried to figure out what the hell was going on. He had a great bedside manner though, so I let it slide and snarked it up with him. I mean really, I didn't have much left but comedy at this point. Picture yourself getting an ultrasound and literally praying that you would have gallstones and more surgery just so this shit would end and you can see where my mental state was at this point. At about that time we decided to test for Addison's disease (listen to me - "we" I sound like a doctor for pete's sake), I left my job and my health coverage behind. Just let me say business, family, and integrity do not always mix - but that's a topic for another diary another day.
This, of all times in my life, was when I went to work doing "job's american's won't do" at an industrial plant farm working 6-7 days a week, driving 50 miles to and from each day, doing hard labor in the Alamaba sun, when I wasn't in a greenhouse where it was 20 degerees hotter. The last 9 months, I worked 7 days a week. I had my reasons, but yet again, another diary for another day. Never doubt an old man telling you that hard work builds character, but it also built health in my case. I am by no means recommending such travails for the chronically ill, but I felt better. The puking died down as did the abdominal pains. If only the psoriasis had gone away. I did this work for almost 2 years, until about a month ago. After a year, they offered me health insurance, if you could call it that, with a pre-exsisting conditon clause of 2 years and co-pays that would make Trump blush. Needless to say, I never signed up. That was about 7 or 8 months ago.
I left my brief forray into servitude to move across the state when my girlfriend got a really good job making almost as much as the 2 of us combined previously, when you count the $150/week I was spending on gas anyway. And in a few weeks, I will be working for the same company. I just hope the pre-exsisting conditon clause isn't 2 years. I haven't even bothered to ask her, I don't want to worry about it until I have to. Although being an ad exec can be tuff when client's are constanly thinking to themselves, "Why is his fucking skin falling off all over my desk?!".