NOTE (3yards): This is the original discussion of Clarity's health issues. It is placed here for informational purposes only. This thread is locked. All discussion of this issue should be handled on this thread:
Spring Drive 3: Clarity’s Information
Here it is folks. Everything worth mentioning, and everything worth not. I had written a lot of this up for a hearing we had last year, but I've spent the last few hours updating it and expanding. It's more than anyone should need or want to know, it doesn't 'answer' any questions. It's grossly personal. But it's all there. Yes, it's long as hell. But then I'm a bit of a trainwreck now. Feel free to comment, discuss, question, etc.
SYMPTOMS/PROBLEMS:
Regular upper-respiratory infections – Sinusitis, bronchitis, laryngitis, etc.
Sinus swelling – To the point of almost entirely restricting breathing. Extremely sensitive to dry/cold air. Seems to worsen with activity? This swelling always adds to my breathing difficulties. My worst moments are where everything is hitting me at the same time. Bad swelling, restricting air flow. On top of existing breathing problems. On top of heart palps and strain.
Regular ear infections – Most often results in severe pain and difficulty trying to bite down/chew. Pain often radiates up into the skull around the temple and back, as well as into the cheek and neck. During/after one of these, swallowing often results in a cracking/popping sound around the eardrum. These infections and the resulting swelling generally worsen existing Temporal-Mandibular Joint Dysfunction symptoms, often resulting in a physical inability to fully open or close my jaw, as the alignment becomes skewed.
Difficulty breathing – I always struggle to explain this. It's often easier to exhale than inhale, and the worse it gets, the more effort it takes to breathe in. Additionally, during a time like this, it feels like how much I can take in is diminished. This can be brought on by exertion, for talking too long, by swelling in my sinuses, throat and chest, even by increases in environmental temperature. When the power goes out, particularly during the Summer, the air in the house/room gets very stale, muggy and the temperature rises. This always results in a sharply increased rate and severity of heart 'events', increased swelling, all resulting in heavily labored breathing. Feels a bit like a snowball effect at the time, because when the breathing difficulty is at its worst, my heart feels like it's under a tremendous strain. As if I were doing something incredibly taxing, like trying to run with a huge weight. I often get extremely tired during/after an event like this, to the point where I just end up asleep, no matter how recently I might have just woken up. At the worst moments of breathing difficulty, I apparently become incoherent. My wife would have to try and explain better, but it seems I repeat myself, have a hard time forming sentences, and end up a little confused about what's going on. I always have some difficulty and discomfort related to breathing these days. Severe enough that just trying to be on my feet long enough to go to the bathroom can be a real problem. This has been something that has gone downhill over time. In 1998 it would come and go, but I largely led a normal life. By 2000 it was pulling me down more. I still got around, went places, exercised, but it often came at the price of real difficulty afterwards. By 2001, I was having a lot more problems just getting around and going places. Particularly if it meant going in an establishment where the air was cold and dry. I went out less, because the consequences for doing so were much more severe. By 2002, I was really no longer leaving my home/yard, unless it was to go to a doctor's appointment. This was/is extraordinarily difficult for me, as I have always been an active and outdoorsy person. By 2003, I was having a very hard time just going out into my yard for short periods of time. I was having to let the dogs out less, when I did I could only sit and watch, not play with them at all, even to throw a ball or frisbee. Standing only accelerated how quickly I would go downhill. By late 2003/2004, I basically never went outside anymore, I was spending almost all my time in my room now, as going downstairs was too costly an exercise. In 2005 I was completely bedridden. It's difficult to get up and go to the bathroom to brush my teeth, bathe, or anything else. I've gone downstairs maybe 2-3 times this year, and it's always a major undertaking. Sitting up in bed is difficult for extended periods, even impossible sometimes. I can't stress this point enough, I haven't taken a clear easy breath since 1999. I remember what it's like, I sometimes have dreams about it (literally – although most often my existing difficulties reside in those as well), 24 hours a day, 7 days a week, I am struggling to breathe to some extent. Doesn't matter how stressed/relaxed, fatigued/rested, etc. I am.
The breathing issues are far and away the most debilitating of the symptoms. Related to those, perhaps one of the key issues involved;
Pectus Excavatum – This is normally something that hits kids during development. For them, it can sometimes show as a physical defect. A hollowness of the chest, or a dip in it. I have no such visible defect, and I didn’t have ‘pectus’ growing up, nor did I show any signs of it in the Marines. Inexplicably, and understand that I offer this up without any explanation, appreciating that there’s no real way this can happen – but my skeleton has changed over the last 8 years. My mid to lower ribs constricting, creating a boney crushing bear hug of everything inside. Docs don’t have an explanation for it. It’s been identified by several different docs and x-ray analysts. It seems to be getting worse with time. This was one of the many documents that was withheld by the Mayo clinic for years. My rib cage is slowly crushing my lungs. When you combine the chronic and severe sinus issues, with the pectus, it’s easy to start to appreciate where my breathing issues are coming from. They’re not the whole story though. There’s something else going on in there that shows up as a ‘loop restriction’ on pulmonary function tests, and there’s also the scarring inside the lungs themselves.
Coughing – This used to be much worse (much better maybe? I don't know). I used to constantly cough stuff up. Extraordinarily elastic but usually (barring an infection) clear sputum. This would sometimes actually relieve some of my breathing difficulty, if I could get enough of it out, my airways felt more open and relaxed. I don't cough much anymore, and when I do, it's rarely productive. The upside is coughing less results in less rib/chest pain (see below), or at least fewer flare ups of it. The downside is not being able to move that phlegm means I don't get those brief bits of relief. Very likely just a byproduct of the pectus.
Chest pain/Costochondritis – Almost always present at the front/middle base of the ribcage, most severely. Then out along the sides along the ribs. Very tender, and pain from these areas tends to linger longer than one would expect. Very likely just a byproduct of the pectus.
Heart irregularities/arrhythmia – With some regularity, at complete rest or not, it will feel like it skips a beat and then takes a hard one, or that the rhythm changes significantly enough that I end up taking a sharp breath because of it. I often find that coughing afterwards seems to settle or sort of reset it a bit. Seems to happen more frequently when lying on my left side, than not, but can and does happen in any position. The most severe cases of this can result in a clamminess, cold sweat, and very severe headaches. No question that this can also be fatigue and physical strain induced. Frequently happens during any sort of exertion, particularly prone (e.g. sex). This icertainly seems to be tied to the breathing issue, or the breathing to it. I was diagnosed as having Mitral Valve Prolapse in 1999, something that was re-confirmed in later doc visits to different places. In 2002, it was no longer showing up on tests. May just be exacerbated by the pectus? Certainly worsened by breathing difficulties as well. Was the mitral valve prolapse caused by the constriction from the pericarditis? Or perhaps by skeletal changes? No answers here.
Shaking – Started back in February 2005, every once and while I would ask my wife if she was shaking the bed a bit. Felt like someone was gently shaking the whole thing. This went on, with slightly increased frequency for months, until April, when the shaking became so violent and persistent that it was clear it wasn't the bed at all. So I'd ask Jo if I was shaking, and I wasn't, at least physically. The closest thing I can compare this to is having a strong electrical current running through me, full body high-frequency shakes. Strong enough to prevent sleep, inhibit concentration, etc. Comes and goes now, always worst when I'm fatigued. There are times now, when it gets so bad, that it actually wakes me up. When it happens, there’s often a loss of manual dexterity (see below) that comes with it. I have a hard time with precision movements/coordination, like striking keys on a keyboard. This is a relatively ‘new’ issue, and it’s been getting quickly worse.
Vision degradation/loss – Has gone downhill in line with the shaking. My vision can just 'go bad' sometimes. Blurriness I can't control, often just out of my left eye, but sometimes both. Generally results in horrible headaches. Rarely, but often enough to mention, I can 'see' blinding light in that eye (where there is none), and a couple times it's gone completely black for a moment or two. Have thought to check BP once or twice when the vision degrades, but there's no sign of a marked increase from my experience. I also sometimes have relatively severe pain in one or both eyes, more often the left.
Other sensory issues – Acutely sensitive to perfumes, strong chemicals, smoke and other irritants. These directly impact the swelling and breathing issues. Sometimes smell something burning, almost an electrical smell, acrid, where no one else detects it. The chemical issue has been called ‘Multiple Chemical Sensitivity Disorder’. But this, apparently is one of those contentious diagnoses (like fibromyalgia, or chronic fatigue, etc.) that some ‘believe’ in on a broad scale, and some don’t. As an aside, Dave Labounty’s wife (CltBuckeye62/CharlotteBuckeye) suffers from this, is considered disabled for it alone, and is on disability.
Swallow reflex/choking – An ongoing problem that comes and goes in terms of intensity. Almost like my system just forgets how to swallow. Often end up choking a bit on items this way, even something as simple as oatmeal. Intensity seems to run a parallel with the vision and shaking issues mentioned previously. Very easy for things to not make it all the way down and become partially lodged inside my throat. Hard to explain this, except to say that sometimes my reflexes, all of them, are faulty.
Manual dexterity – Related to the shaking and vision issues, I sometimes (rarely) find that during the worst moments with the aforementioned symptoms, that my fingers don't want to cooperate. I can go to type a sentence, 'feel' like my fingers are going to the right keys, but physically they aren't at all. Not sure how best to describe it, it's a bit like the communication between the brain and digits break down, or at least that they are sluggish to comply.
Tingling/numbness – Extremities mostly. Hands and feet are most common. Was much more frequent in the past, but still comes and goes with light frequency. Used to wonder if it might be as simple as hyperventilation, or a pinched nerve from having to adapt to extended (to put it lightly) time in bed.
Headaches – Related to the heart and breathing issues, I believe. These come and go, but sometimes hit with a ferocious intensity. Sharp blinding pains through, sometimes seemingly mobile. Rarely just the dull ache that I associated as a headache before this all started. Definitely tied to the vision problems. As one gets worse, so does the other.
Teeth – Probably doesn't need to be listed here, but as I'm trying to cover all the bases, I will. I've lost a couple fillings. Right/bottom rear molar, that went out about a year ago, over time the area around the exposed cavity has broken away, and the tooth is now a hollowed out shell. A thin horseshoe-shaped ‘U’ of tooth walls, with a recess in the middle that goes down into the roots below the gumline. It is an open, and decaying, portal from my mouth to my blood supply. The surrounding gums are often ripped up and bloodied because of food being wedged down in there. The pain used to be intense from the tooth itself, but let off after a few months. More recently, I've lost a filling or cracked a tooth on the top left. This one is still very raw, the pain incredible at times. It often develops/spreads across the entire right side of my face, down into my neck. I suspect I have a lot of cavities right now. Really difficult to adequately describe the pain here. I often find myself sort of amazed by it when its at its worst. Already mentioned TMJ, it’s a severe case, but more an annoyance than anything else, and certainly not related. The teeth thing is an open opportunity for something like sepsis, endo or pericarditis, etc. Problem is, I can't just go see a dentist. Even if I had the money, and I don't, I would need a place in a hospital, because it's likely there would be rapidly compounding problems before all the work was done. Before that was true, and I could get around a bit, my local dentists in Florida literally refused to see me, citing liability issues. We were turned away.
Apnea – Just what it is. Just like my airways go from ‘severely restricted’ to ‘entirely closed off’ at times during my waking life, so too do they when I’m asleep. My rest is often disturbed by waking up choking or gasping for air. It’s usually because my sinuses have closed entirely, and can usually be alleviated by simply turning over a different way. Sinus swelling seems to be directly related to how I rest my head. It’s a bit like having a sinus infection, and if you lay on your left, the left closes up leaving the right a bit more open, and so too to the right. I just have to find a position where *something* is a little open, and when I can’t find one, then I just don’t get to sleep. I ride it out until exhaustion takes over, and even then, I’m woken up so often because of the breathing difficulty, that you can’t really call it sleep at all. This is why my schedule is *never* stable. I might be sleeping on and off every 5 hours for a few days, then I might be stuck awake for 20-30 hours straight, then may sleep for 18, then up for 3 and back down for another 11. There’s no semblance of control, it’s all adaptive and reliant upon everything else. In 2006, I’ve been lucky to catch two nights of genuinely restful and uninterrupted sleep. 2 nights, in 3 months.
Allergies – Eh, here I’ve tested positive for some environmental allergies, and also tested clean for them. I presented as having a severe systemic allergic reaction when I ended up in the ER just before the move. But granted, the dust in the house was at a high from the packers boxing and loading. Perhaps the ‘multiple chemical sensitivity disorder’ falls in here somehow.
‘Other’ issues – There are other problems that have developed. Nothing really worth going into, and a little more ‘personal’ than the rest. I have a couple lumps on one of my testicals, and can sometimes be in intense pain in that area. I’m showing a number of signs, and have a family history, that has prompted a few docs to say that I have to get a colonoscopy and prostrate check as soon as even remotely possible. I have some urological issues that need to be addressed, that are likely related to the necessary prostate/colon checks. I get low level infections, constantly, in my eyes, ears, nose and throat. They come and go, we don’t bother treating them anymore. The anatomy of my ears has changed. My canals have been ‘torqued’ to the point where it’s actually hard for a doc to see my drums. We don’t know how or why this has happened. The glands below the jaw, in the upper neck, are effectively always in what can only be described as ‘very difficult pain’. Swollen, painful to the touch, makes swallowing a bit unpleasant, but it is what it is. Pain, out of everything, is the one thing that I have near-complete command over it. I live with so much of it, that it’s more like white noise, generally, than something really bothersome. I mean, I’ve spent the last 18 months or so with a molar falling apart bit by bit. Pain is just something I can adapt to, so I never really pay it much attention. There are times when it’s unmanageable. So bad that I literally can’t hold a conversation, or even watch something on tv, or read something online or in a book, because my concentration is completely blown. All that exists is the pain. I either ride these out, or I break down and take something like Alleve, or Darvocet, or stronger. I’ve never been a fan of pain meds, so when they’ve been prescribed to me in the past, I’ve almost always had some left over. We keep those that haven’t expired around for the rare times of true need.
HISTORY/WHAT WE KNOW:
This all started with what I thought was the flu in 1998. I ended up dehydrated, and the flu turned into an extraordinarily severe case of bronchitis. Whatever made me sick at the time got into some other areas, resulting in what at the time was called 'pleuracy', and more notably into my pericardium. The pericarditis was treated with high doses of indomethacin and antibiotics. All that combined, and appreciate that I'm glossing over it a bit, it was a very difficult month or so where all of this hit me, was/is basically ground zero for all of my problems. Before all of this, I was generally an extremely healthy person. The indocin really did a number on my stomach, resulting in ongoing problems with acid reflux, something I still deal with now.
From 1998-2002, I was under the regular attention and coverage of doctors. Can't begin to cover every single test that was run, but can comfortably say that while good leads were found, nothing conclusive was ever arrived at. I know my ANA's are/were elevated. I know there's (as of a few years ago, no idea if it's the same now, never got to follow up on it) a 5mm nodule in my right lung. I passed methacholine tests and other avenues investigating asthma, but pulm function tests showed signs of some sort of obstruction (may be the wrong word, restriction?) I showed at one point being allergic to dust mites, mold and animal dander. Then later showed as having no allergies at all. I had a clear case of Mitral Valve Prolapse for a while, then later no signs of it showed up for the Mayo at all. I have a couple lumps on my right testicle, but the one time it was checked out (briefly) they just found a thrombosed vein.
I used to suffer recurring nosebleeds because of an injury while in the military, and after chemical cauterization didn't stop them, I underwent electrical cauterization. It was after that point that sinus swelling became a real problem. Could be a coincidence, could be a cause. No idea. The main structure cited as causing most of my sinus airway restriction are the turbinates.
I was a Marine from 1989-1993, cryptolinguistic intelligence out of Hawaii. Theories have been tossed around that I might have been exposed to something during that time. FWIW, James Hopkins, MD (for whatever reason, his BP username escapes me, we all know him) put this notion out a long time ago, and has felt pretty strongly about it. Unfortunately, he saw the pre-disclosure version of my medical records, and never had all the information. Either equipment, chemicals, or one of the dozens of mystery injections. I have no idea, and given the nature of my field, there's no way to know for certain. While there was a higher than normal rate of testicular cancer within the battalion during my time there, I am in contact with Marines I served with, and no others have reported similar issues.
I have gone through more skepticism since 1998 than I would wish on anyone. One visit to the ER some years ago, where I was struggling so badly I worried my heart would just simply give up – they decided before examining me that I was a likely drug abuse case, and ordered a urine test (which came back completely clean.) I don't now, nor have I ever been a smoker. I'm not now, nor have I ever been a drug user. I am not now, nor have I ever been a heavy drinker. I don't look sick. A theory the medical establishment is always quick to move to when easy answers to my problems don't present is anxiety and stress. It has been investigated and re-investigated. I've given these theories more than fair time, attention and consideration. More than anyone else, I wanted this to be just something in my head. Unfortunately, it is not. So says no improvement during/following runs of meds like Paxil. So says a court-ordered psychiatrist, so says a court-ordered psychologist. So too have said effectively *any* doctor who has spent more than a couple appointments with me and reviewing my case. So says my constant state of suffering for several years now. Make no mistake, that this has all destroyed us financially and in some ways emotionally is a very real issue, one that I will have to address when I'm able. But the mental and emotional side of things are a result of my physical issues, not the cause of them. Pride often keeps me from sharing with others just how much I suffer day in, and day out. For whatever wired reason, I don't like appearing weak and/or sick, and this has caused confusion with friends, family, even doctors.
I am getting worse. Atrophy is becoming a problem. With each passing month, I'm able to do less. There are no 'breaks' in this. I've left my house on foot *one time* in 2005. Got so fed up with everything, I walked out to the mailbox and back. I paid dearly for that for a few days afterwards. When I say I'm bedridden, I mean I live there. Exertion always comes with heavy costs. Every day. I take baths because it's too hard to stand in the shower. I lean over the sink to brush my teeth because the whole process comes at such a cost. I don't talk to anyone on the phone, because of how my problems compound the more I use my voice. I can't get out of here to get my teeth fixed, no matter how excruciating the pain. I had to sit home by myself when a dog I had been with for a decade was put to sleep at a relatively young age because of cancer, my wife was able to be with him. Ear infections and problems with my teeth sometimes force a liquid diet for days or weeks. Chemicals and man-made perfumes literally choke me. Magazines have to have cologne ads ripped out before I can view them. We used to bring in almost $130k a year. Now, entirely unable to find something I can do from home on a flexible enough schedule to be manageable, I am completely without income. Jo/Longwood, forced into a nursemaid-type role, always has to be careful about how long she's gone from the house because of how little I'm able to do for myself, has a job online that brings in about $24k a year. My house has gone into foreclosure twice, we managed to save it because of a death in the family and money that resulted from that, but barring some sort of new deus ex machina-like element, there's effectively no way we can stay in here, so we will lose it. (Well, lol, obviously we finally did).
I struggle to breathe, and deal with intense pain, every single day. Because I have no choice. I have no quality of life. I get by on Sudafed, Benadryl, Zantac and Breath-rite nasal strips. Anything I can do to keep my sinuses open. The meds every 6 hours without fail, with infrequent but prolonged periods of abstinence intended to sort of purge all of it from my system. These are always very difficult, but then who knows what something like pseudoephedrine every six hours, every day, for a few years is going to do to a system.
Exertion is nearly impossible. Even the smallest amount has a direct and severe impact on my heart and breathing. I can try and describe the progression of events. I will stand up, and start moving, and almost immediately, breathing is a little more difficult. I assume that’s from the pectus, with my lungs filling more of my lower chest cavity, where the skeletal ‘changes’ have created such a marked restriction. In any event, I’m now fighting sinus restriction, and the ‘bear hug’. There’s only so much air I can move, that doesn’t increase well, which is why there’s a compounding effect as I exert. Even in the smallest amounts. So as I start to move, I’m doing an increasingly worse job of oxygenating. Within a few minutes, I’m going to start developing a headache. A few minutes later, this is going to start being significant, and I may start coughing a bit, or might start drawing in sharper breaths trying to compensate for the lack of air. I’m still ‘functioning’ at this point, but it’s usually about where, say, if I’m in the shower, that I’m quickly trying to wrap things up, because I know it’s getting close to an uglier phase. Which is where everything already mentioned is worse, the headache is particularly bad, but now the palpitations have picked up. Often accompanied by some chest pain. My heart is now working harder trying to keep up. The specific arrhythmia is hard to describe, but it’s often marked by a ‘skipped beat’ sensation, sometimes something worse. A few different things can happen at this point. I can often start to see spots in my field of vision, I attribute this to elevated blood pressure, but sometimes it can also lead to tunnel vision, and a few times my vision in one or both eyes has gone completely black from it. All a question of just how hard I push myself to stay up and keep moving. While that’s happening, in the worst moments, I can start to become a bit incoherent. It’s suddenly much harder to form sentences. Hard to explain, that, because I’m generally not nearly aware of it as those around me are. Jo and Vince could probably better explain. At this point, regardless of what I’m doing, my body temperature is running very hot. I am clumsy, finding it hard to maintain balance, difficult to find sturdy footing. Physically at this point, it’s likely my lower extremities are swollen. My feet in particular are often red, and perceptibly swollen, likely from more blood collecting down there than probably should. But I’m still moving. Somewhere in here, that heat I mentioned earlier is gone, and I am cold. Cold to the touch, my face feels cold, it’s always accompanied by a ‘cold sweat’. I’m always very pale at this point, and somewhat sluggish. Harder now to make things work the way they should, hard to grip things, I may no longer be speaking at all. Single words are very difficult, at this stage I just need to lie back down. My chest is often in screaming pain at this point, and when I have the numbness/tingling in extremities, this is usually about where it is. My head feels like it’s going to explode. Too much inside my skull, I feel like cracking it open might help relieve the pressure inside. My heart is not doing well at this point. My breathing is shallow, in forced little clips. My sinuses have likely been 100% blocked for some time now. But I know I just need to lie down, and give my system time to recoup. There’s a point I haven’t pushed past with this little exercise. Can’t really define where it is, but it’s at that ‘cold sweat’, disoriented, clumsy, incredible headache, sort-of-incoherent state. A bit before I’m like that, my EKG isn’t normal at all. I’d have to find the paperwork from the hospital visit just before the move back to Ohio, but I’m showing both electrical and blood-level (something elevated, forget what) signs that patients do during or after a heart attack. I don’t believe I’ve had any heart attacks, but 100% of the docs I’ve seen in the last year, even casually, have voiced more serious concern about a stroke. I am, one suggested, just sort of on stand-by for a serious cardiac event.
Anxiety during all of this? I know what to expect. Sometimes it’s a little better than normal, sometimes it’s worse. I always know that I’m in control of it though. At any point, I can lie down, and just try and focus on even breathing. Just close my eyes, stop exerting, and stabilize. Sometimes it takes hours, and I often ‘pay’ for the exertion with a horrible headache that stays, sharp pain behind my eyes, bad/distorted vision, etc. I’ve just been going through all of this so long, that it doesn’t really hold a lot of novelty or anxiety for me. I perpetually struggle to breathe, at the worst moments, I know I’m having to fight my psychosomatic nervous system a bit. Your system just wants to tense up and react when you’re being suffocated. But you know, you get through it. I learned *very* early on, back in the early days when I didn’t know how bad an ‘attack’ would get, back when I didn’t understand what was happening to me, that if I allowed myself to panic, that everything would be far, far worse. Back in 2000-2001, when a lot of the new severity was still very unfamiliar to me, we ended up in the hospital during the worst episodes. These were often wasted/pointless trips. The process of lying down in the car, lying down at the hospital, just not exerting, generally had me feeling better before I was even seen. Which, of course, makes you look like a bit of a nutcase.
Anxiety can be an issue, most of the time I manage it pretty well. Emotionally, all of these issues come at a cost. I’m easily angered, perpetually frustrated, and certainly a little bitter. I feel that I’ve wasted years of my life that I can’t get back, because of bureaucracy and ignorance alone. I hate, literally hate, many of the doctors I’ve seen who I feel could have, and should have, done more. The Mayo in particular took well over six figures from myself and BC/BS, combined. Not only did they not do anything for me, but they tossed me from department to department just killing time and building up bills, and then hid my medical records from me for years afterwards. The very records that actually told a story. The pectus. The loop restriction. Other significant issues – all hidden from me, and therefore hidden from other doctors and the social security courts – for reasons they’ve made clear they’ll never disclose. Only a new Florida law compelled them to release all my documents. It wasn’t until the end of 2005 that I finally had all the info from them, and I know a few things are still missing. Specifically some meetings with the head of Mayo’s rheumatology department, some specific bloodwork (that I believe to be unremarkable, so I don’t know why it’s not there), and specifically some write-up on the lung nodule. An evaluation of a lung xray done that talked about the opacity. So stress and anxiety? Very real. The cause of my problems? No.
I always ride it out now, and obviously, am still here for it. The trip to the ER before the move was an exception. Dust and heat combined with everything else, and I was in a rough way. Specifically, showing the exact heart-signs that a few docs had warned me specifically about. When the chest pain would not go away, and my rhythm wouldn’t normalize, we decided to take me in. But when we got me upright and moving, I couldn’t maintain any balance whatsoever. My head was about to explode, and everything magnified from the effort to try and move. We called for an ambulance. They came out, got me out to the truck, and after hooking me up with oxygen and getting into a vein, they gave me nitro. The EKG was out of whack, the blood was showing the elevation I mentioned before. The x-ray showed that basically the entire bottom half of my lungs were being restricted to the point that they showed entirely opaque on the film. But what to do? They couldn’t do anything to open my sinuses back up. They couldn’t do much of anything, except give me time in a fixed environment. They monitored for a while until my heart activity seemed to stabilize again. They told us not to try and move on Friday (this was on a Wednesday, I believe). When we made it clear we had no choice, she told us that we better know where all the hospitals were on the way up. I asked for something that would help me sleep, and make me care less if there were some sort of major event/catastrophe during the move, and she prescribed Xanax. She also sent me off with a new bottle of albuterol, as a “probably won’t help if things get ugly, but can’t hurt, so take it just in case” measure. She was glad we had rented an RV, and told me not to push anything, even just a little bit.
The Xanax was great. I did sleep. We had an unfortunate incident on the trip where the AC broke down while in heavy traffic. The interior environment quickly got hot, the air thick and harder to move. This closed my airways off almost immediately, but what to do? Just rode through it. The med simply helped me do what I do, which is stay comfortable, physically relax, and just ride through it. We got the AC fixed, kept on going. Jo’s dad had come in to do the driving. Jo monitored me during the trip. Vince drove our Jeep behind us. We made the trip without any major incidents. It took me about 3 weeks to ‘recover’ back down to my normal baseline afterwards. Those weeks being some of the most miserable I’ve spent in some time. With pain, my airways, and general inability to do anything at their worst points.
CURRENT THEORIES/THINGS TO BE PURSUED:
Multiple Sclerosis, amongst a range of other issues, have been put forward as the most likely ‘name’ for my problems. Lupus has been suggested more than once. As have other rheumatoid diseases. Sarcoidosis is yet another.
Given the more recent neurological symptoms, a doctor we talk to from North Carolina has urged me to get in for an MRI and eye exam as soon as possible. He's very interested in pursuing with Multiple Sclerosis, Guillaime-Barre, a stroke, a tumor, or some other brain event.
It's been suggested that this is all fall-out from the trauma I went through when I first got sick in 1998. That my immune system is on a rampage against me, and therefore isn't bothering with infections and such.
My mothers father is currently dealing with colon cancer. My mother recently had polyps removed from her own colon. My family has a few cases of Wolffe, Parkinson, White Syndrome (have to check the spelling on that), including my younger brother (Vince/vrbryant) who, at 23, has been told he can really only address it surgically.
My battalion in Hawaii had an unusually high number of testicular cancer cases. Could be random chance, could be something we were exposed to. The lumps on my right testicle have to be better checked out at some point.
The nodule in my right lung was considered likely to be scar tissue at the time. Never had a chance to follow-up, but another CT will probably be necessary at some point to make sure that it's still as it was when first discovered some years ago.
DIAGNOSING:
I meet and/or EXCEED medical community standard diagnostic requisites for both asthma and multiple sclerosis according to multiple standards.
For real world purposes, the 'name' of my problem means nothing to me. It's the impact that limits me. For the medical and legal establishment, lacking a name almost seems to force the assumption that it doesn't exist.
I *have*, with documentation to prove it, the following;
- Pectus ‘deformity’, relatively severe, just not visibly/physically apparent.
- Chronically infected sinuses, with almost entirely restricted airways. Both turbinates being the worst culprits.
- Scarring or some sort of growth on my lungs. 5mm only showing up in CT scans in 2002. Visible on x-ray now.
- Some sort of larger opacity in my lungs. Right lobe is most often mentioned. It's also been described as being both lower lobes. What sort of opacity is unknown, and requires additional examination.
- History of chronic ear, nose, and throat infections. Viral, bacterial, even a few fungal.
- Highly elevated anti-nuclear antibodies in my blood.
- A noted ‘restriction/obstruction’ in the loop test/pulmonary function.
- Abnormal ECGs during ‘problem times’. Q-wave issues, I can’t be more specific.
- Elevated troponin during an ‘attack’. “Above the threshold determined for the diagnosis of myocardial infarction.”
- Mitral valve prolapse, which now seems to be gone.
There's more for that list, and I'll add to it as it comes to me.
What we *don't* have is evidence, further research for the following;
- Need (according to docs) an MRI, eye exam, spinal tap, colonoscopy, stomach scope, new pulm function tests, complete chest CT work-up, a new echo on my heart to determine if there has been scarring, have been MIs. New blood work, testicular and prostate exams, urology workup, sinus surgery, and of course major dental work.
- No explanation for the chemical sensitivity.
- No explanation for the total and worsening inability to exert.
- No explanation for the constant infections.
- No explanation for the neurological issues.
- No explanation for the lung scarring.
- No explanation for MVP coming and going.
- No explanation for my continued decline.
According to the government. I'm not sick, there's nothing wrong with me. That always makes me feel a bit better.
At my current rate of decline, I think I'm looking at a major heart attack or stroke within the next 12 months. Sounds like a ridiculous statement, but there's a natural pattern to my decay, and I personally see it turning unmanageable (on a permanent level) in that time period. 18 months at the outside. Longer if I continue to do what I need to do to "get by". Shorter, the more I'm moved around, stressed, poked and prodded. To say that we need appointments that require moving me out of the house to be productive and meaningful, would be a gross understatement.
Putting me in a car and getting me anywhere, is dangerous. It's really that simple. Obviously it's going to have to happen. If and when the Ohio courts ever get their asses in gear and start hearing my case again, I will have to go to court, I will have to go and see their docs. My guess is it will be one of those trips that will be the proverbial straw, but what the hell, shit has to happen for their to be a chance at anything.
I am not a melodramatic person. I don't like attention. I don't like exposing my personal issues to a lot of people. I don't like being so weak and so broken. It all is what it is though.
Spring Drive 3: Clarity’s Information
Here it is folks. Everything worth mentioning, and everything worth not. I had written a lot of this up for a hearing we had last year, but I've spent the last few hours updating it and expanding. It's more than anyone should need or want to know, it doesn't 'answer' any questions. It's grossly personal. But it's all there. Yes, it's long as hell. But then I'm a bit of a trainwreck now. Feel free to comment, discuss, question, etc.
SYMPTOMS/PROBLEMS:
Regular upper-respiratory infections – Sinusitis, bronchitis, laryngitis, etc.
Sinus swelling – To the point of almost entirely restricting breathing. Extremely sensitive to dry/cold air. Seems to worsen with activity? This swelling always adds to my breathing difficulties. My worst moments are where everything is hitting me at the same time. Bad swelling, restricting air flow. On top of existing breathing problems. On top of heart palps and strain.
Regular ear infections – Most often results in severe pain and difficulty trying to bite down/chew. Pain often radiates up into the skull around the temple and back, as well as into the cheek and neck. During/after one of these, swallowing often results in a cracking/popping sound around the eardrum. These infections and the resulting swelling generally worsen existing Temporal-Mandibular Joint Dysfunction symptoms, often resulting in a physical inability to fully open or close my jaw, as the alignment becomes skewed.
Difficulty breathing – I always struggle to explain this. It's often easier to exhale than inhale, and the worse it gets, the more effort it takes to breathe in. Additionally, during a time like this, it feels like how much I can take in is diminished. This can be brought on by exertion, for talking too long, by swelling in my sinuses, throat and chest, even by increases in environmental temperature. When the power goes out, particularly during the Summer, the air in the house/room gets very stale, muggy and the temperature rises. This always results in a sharply increased rate and severity of heart 'events', increased swelling, all resulting in heavily labored breathing. Feels a bit like a snowball effect at the time, because when the breathing difficulty is at its worst, my heart feels like it's under a tremendous strain. As if I were doing something incredibly taxing, like trying to run with a huge weight. I often get extremely tired during/after an event like this, to the point where I just end up asleep, no matter how recently I might have just woken up. At the worst moments of breathing difficulty, I apparently become incoherent. My wife would have to try and explain better, but it seems I repeat myself, have a hard time forming sentences, and end up a little confused about what's going on. I always have some difficulty and discomfort related to breathing these days. Severe enough that just trying to be on my feet long enough to go to the bathroom can be a real problem. This has been something that has gone downhill over time. In 1998 it would come and go, but I largely led a normal life. By 2000 it was pulling me down more. I still got around, went places, exercised, but it often came at the price of real difficulty afterwards. By 2001, I was having a lot more problems just getting around and going places. Particularly if it meant going in an establishment where the air was cold and dry. I went out less, because the consequences for doing so were much more severe. By 2002, I was really no longer leaving my home/yard, unless it was to go to a doctor's appointment. This was/is extraordinarily difficult for me, as I have always been an active and outdoorsy person. By 2003, I was having a very hard time just going out into my yard for short periods of time. I was having to let the dogs out less, when I did I could only sit and watch, not play with them at all, even to throw a ball or frisbee. Standing only accelerated how quickly I would go downhill. By late 2003/2004, I basically never went outside anymore, I was spending almost all my time in my room now, as going downstairs was too costly an exercise. In 2005 I was completely bedridden. It's difficult to get up and go to the bathroom to brush my teeth, bathe, or anything else. I've gone downstairs maybe 2-3 times this year, and it's always a major undertaking. Sitting up in bed is difficult for extended periods, even impossible sometimes. I can't stress this point enough, I haven't taken a clear easy breath since 1999. I remember what it's like, I sometimes have dreams about it (literally – although most often my existing difficulties reside in those as well), 24 hours a day, 7 days a week, I am struggling to breathe to some extent. Doesn't matter how stressed/relaxed, fatigued/rested, etc. I am.
The breathing issues are far and away the most debilitating of the symptoms. Related to those, perhaps one of the key issues involved;
Pectus Excavatum – This is normally something that hits kids during development. For them, it can sometimes show as a physical defect. A hollowness of the chest, or a dip in it. I have no such visible defect, and I didn’t have ‘pectus’ growing up, nor did I show any signs of it in the Marines. Inexplicably, and understand that I offer this up without any explanation, appreciating that there’s no real way this can happen – but my skeleton has changed over the last 8 years. My mid to lower ribs constricting, creating a boney crushing bear hug of everything inside. Docs don’t have an explanation for it. It’s been identified by several different docs and x-ray analysts. It seems to be getting worse with time. This was one of the many documents that was withheld by the Mayo clinic for years. My rib cage is slowly crushing my lungs. When you combine the chronic and severe sinus issues, with the pectus, it’s easy to start to appreciate where my breathing issues are coming from. They’re not the whole story though. There’s something else going on in there that shows up as a ‘loop restriction’ on pulmonary function tests, and there’s also the scarring inside the lungs themselves.
Coughing – This used to be much worse (much better maybe? I don't know). I used to constantly cough stuff up. Extraordinarily elastic but usually (barring an infection) clear sputum. This would sometimes actually relieve some of my breathing difficulty, if I could get enough of it out, my airways felt more open and relaxed. I don't cough much anymore, and when I do, it's rarely productive. The upside is coughing less results in less rib/chest pain (see below), or at least fewer flare ups of it. The downside is not being able to move that phlegm means I don't get those brief bits of relief. Very likely just a byproduct of the pectus.
Chest pain/Costochondritis – Almost always present at the front/middle base of the ribcage, most severely. Then out along the sides along the ribs. Very tender, and pain from these areas tends to linger longer than one would expect. Very likely just a byproduct of the pectus.
Heart irregularities/arrhythmia – With some regularity, at complete rest or not, it will feel like it skips a beat and then takes a hard one, or that the rhythm changes significantly enough that I end up taking a sharp breath because of it. I often find that coughing afterwards seems to settle or sort of reset it a bit. Seems to happen more frequently when lying on my left side, than not, but can and does happen in any position. The most severe cases of this can result in a clamminess, cold sweat, and very severe headaches. No question that this can also be fatigue and physical strain induced. Frequently happens during any sort of exertion, particularly prone (e.g. sex). This icertainly seems to be tied to the breathing issue, or the breathing to it. I was diagnosed as having Mitral Valve Prolapse in 1999, something that was re-confirmed in later doc visits to different places. In 2002, it was no longer showing up on tests. May just be exacerbated by the pectus? Certainly worsened by breathing difficulties as well. Was the mitral valve prolapse caused by the constriction from the pericarditis? Or perhaps by skeletal changes? No answers here.
Shaking – Started back in February 2005, every once and while I would ask my wife if she was shaking the bed a bit. Felt like someone was gently shaking the whole thing. This went on, with slightly increased frequency for months, until April, when the shaking became so violent and persistent that it was clear it wasn't the bed at all. So I'd ask Jo if I was shaking, and I wasn't, at least physically. The closest thing I can compare this to is having a strong electrical current running through me, full body high-frequency shakes. Strong enough to prevent sleep, inhibit concentration, etc. Comes and goes now, always worst when I'm fatigued. There are times now, when it gets so bad, that it actually wakes me up. When it happens, there’s often a loss of manual dexterity (see below) that comes with it. I have a hard time with precision movements/coordination, like striking keys on a keyboard. This is a relatively ‘new’ issue, and it’s been getting quickly worse.
Vision degradation/loss – Has gone downhill in line with the shaking. My vision can just 'go bad' sometimes. Blurriness I can't control, often just out of my left eye, but sometimes both. Generally results in horrible headaches. Rarely, but often enough to mention, I can 'see' blinding light in that eye (where there is none), and a couple times it's gone completely black for a moment or two. Have thought to check BP once or twice when the vision degrades, but there's no sign of a marked increase from my experience. I also sometimes have relatively severe pain in one or both eyes, more often the left.
Other sensory issues – Acutely sensitive to perfumes, strong chemicals, smoke and other irritants. These directly impact the swelling and breathing issues. Sometimes smell something burning, almost an electrical smell, acrid, where no one else detects it. The chemical issue has been called ‘Multiple Chemical Sensitivity Disorder’. But this, apparently is one of those contentious diagnoses (like fibromyalgia, or chronic fatigue, etc.) that some ‘believe’ in on a broad scale, and some don’t. As an aside, Dave Labounty’s wife (CltBuckeye62/CharlotteBuckeye) suffers from this, is considered disabled for it alone, and is on disability.
Swallow reflex/choking – An ongoing problem that comes and goes in terms of intensity. Almost like my system just forgets how to swallow. Often end up choking a bit on items this way, even something as simple as oatmeal. Intensity seems to run a parallel with the vision and shaking issues mentioned previously. Very easy for things to not make it all the way down and become partially lodged inside my throat. Hard to explain this, except to say that sometimes my reflexes, all of them, are faulty.
Manual dexterity – Related to the shaking and vision issues, I sometimes (rarely) find that during the worst moments with the aforementioned symptoms, that my fingers don't want to cooperate. I can go to type a sentence, 'feel' like my fingers are going to the right keys, but physically they aren't at all. Not sure how best to describe it, it's a bit like the communication between the brain and digits break down, or at least that they are sluggish to comply.
Tingling/numbness – Extremities mostly. Hands and feet are most common. Was much more frequent in the past, but still comes and goes with light frequency. Used to wonder if it might be as simple as hyperventilation, or a pinched nerve from having to adapt to extended (to put it lightly) time in bed.
Headaches – Related to the heart and breathing issues, I believe. These come and go, but sometimes hit with a ferocious intensity. Sharp blinding pains through, sometimes seemingly mobile. Rarely just the dull ache that I associated as a headache before this all started. Definitely tied to the vision problems. As one gets worse, so does the other.
Teeth – Probably doesn't need to be listed here, but as I'm trying to cover all the bases, I will. I've lost a couple fillings. Right/bottom rear molar, that went out about a year ago, over time the area around the exposed cavity has broken away, and the tooth is now a hollowed out shell. A thin horseshoe-shaped ‘U’ of tooth walls, with a recess in the middle that goes down into the roots below the gumline. It is an open, and decaying, portal from my mouth to my blood supply. The surrounding gums are often ripped up and bloodied because of food being wedged down in there. The pain used to be intense from the tooth itself, but let off after a few months. More recently, I've lost a filling or cracked a tooth on the top left. This one is still very raw, the pain incredible at times. It often develops/spreads across the entire right side of my face, down into my neck. I suspect I have a lot of cavities right now. Really difficult to adequately describe the pain here. I often find myself sort of amazed by it when its at its worst. Already mentioned TMJ, it’s a severe case, but more an annoyance than anything else, and certainly not related. The teeth thing is an open opportunity for something like sepsis, endo or pericarditis, etc. Problem is, I can't just go see a dentist. Even if I had the money, and I don't, I would need a place in a hospital, because it's likely there would be rapidly compounding problems before all the work was done. Before that was true, and I could get around a bit, my local dentists in Florida literally refused to see me, citing liability issues. We were turned away.
Apnea – Just what it is. Just like my airways go from ‘severely restricted’ to ‘entirely closed off’ at times during my waking life, so too do they when I’m asleep. My rest is often disturbed by waking up choking or gasping for air. It’s usually because my sinuses have closed entirely, and can usually be alleviated by simply turning over a different way. Sinus swelling seems to be directly related to how I rest my head. It’s a bit like having a sinus infection, and if you lay on your left, the left closes up leaving the right a bit more open, and so too to the right. I just have to find a position where *something* is a little open, and when I can’t find one, then I just don’t get to sleep. I ride it out until exhaustion takes over, and even then, I’m woken up so often because of the breathing difficulty, that you can’t really call it sleep at all. This is why my schedule is *never* stable. I might be sleeping on and off every 5 hours for a few days, then I might be stuck awake for 20-30 hours straight, then may sleep for 18, then up for 3 and back down for another 11. There’s no semblance of control, it’s all adaptive and reliant upon everything else. In 2006, I’ve been lucky to catch two nights of genuinely restful and uninterrupted sleep. 2 nights, in 3 months.
Allergies – Eh, here I’ve tested positive for some environmental allergies, and also tested clean for them. I presented as having a severe systemic allergic reaction when I ended up in the ER just before the move. But granted, the dust in the house was at a high from the packers boxing and loading. Perhaps the ‘multiple chemical sensitivity disorder’ falls in here somehow.
‘Other’ issues – There are other problems that have developed. Nothing really worth going into, and a little more ‘personal’ than the rest. I have a couple lumps on one of my testicals, and can sometimes be in intense pain in that area. I’m showing a number of signs, and have a family history, that has prompted a few docs to say that I have to get a colonoscopy and prostrate check as soon as even remotely possible. I have some urological issues that need to be addressed, that are likely related to the necessary prostate/colon checks. I get low level infections, constantly, in my eyes, ears, nose and throat. They come and go, we don’t bother treating them anymore. The anatomy of my ears has changed. My canals have been ‘torqued’ to the point where it’s actually hard for a doc to see my drums. We don’t know how or why this has happened. The glands below the jaw, in the upper neck, are effectively always in what can only be described as ‘very difficult pain’. Swollen, painful to the touch, makes swallowing a bit unpleasant, but it is what it is. Pain, out of everything, is the one thing that I have near-complete command over it. I live with so much of it, that it’s more like white noise, generally, than something really bothersome. I mean, I’ve spent the last 18 months or so with a molar falling apart bit by bit. Pain is just something I can adapt to, so I never really pay it much attention. There are times when it’s unmanageable. So bad that I literally can’t hold a conversation, or even watch something on tv, or read something online or in a book, because my concentration is completely blown. All that exists is the pain. I either ride these out, or I break down and take something like Alleve, or Darvocet, or stronger. I’ve never been a fan of pain meds, so when they’ve been prescribed to me in the past, I’ve almost always had some left over. We keep those that haven’t expired around for the rare times of true need.
HISTORY/WHAT WE KNOW:
This all started with what I thought was the flu in 1998. I ended up dehydrated, and the flu turned into an extraordinarily severe case of bronchitis. Whatever made me sick at the time got into some other areas, resulting in what at the time was called 'pleuracy', and more notably into my pericardium. The pericarditis was treated with high doses of indomethacin and antibiotics. All that combined, and appreciate that I'm glossing over it a bit, it was a very difficult month or so where all of this hit me, was/is basically ground zero for all of my problems. Before all of this, I was generally an extremely healthy person. The indocin really did a number on my stomach, resulting in ongoing problems with acid reflux, something I still deal with now.
From 1998-2002, I was under the regular attention and coverage of doctors. Can't begin to cover every single test that was run, but can comfortably say that while good leads were found, nothing conclusive was ever arrived at. I know my ANA's are/were elevated. I know there's (as of a few years ago, no idea if it's the same now, never got to follow up on it) a 5mm nodule in my right lung. I passed methacholine tests and other avenues investigating asthma, but pulm function tests showed signs of some sort of obstruction (may be the wrong word, restriction?) I showed at one point being allergic to dust mites, mold and animal dander. Then later showed as having no allergies at all. I had a clear case of Mitral Valve Prolapse for a while, then later no signs of it showed up for the Mayo at all. I have a couple lumps on my right testicle, but the one time it was checked out (briefly) they just found a thrombosed vein.
I used to suffer recurring nosebleeds because of an injury while in the military, and after chemical cauterization didn't stop them, I underwent electrical cauterization. It was after that point that sinus swelling became a real problem. Could be a coincidence, could be a cause. No idea. The main structure cited as causing most of my sinus airway restriction are the turbinates.
I was a Marine from 1989-1993, cryptolinguistic intelligence out of Hawaii. Theories have been tossed around that I might have been exposed to something during that time. FWIW, James Hopkins, MD (for whatever reason, his BP username escapes me, we all know him) put this notion out a long time ago, and has felt pretty strongly about it. Unfortunately, he saw the pre-disclosure version of my medical records, and never had all the information. Either equipment, chemicals, or one of the dozens of mystery injections. I have no idea, and given the nature of my field, there's no way to know for certain. While there was a higher than normal rate of testicular cancer within the battalion during my time there, I am in contact with Marines I served with, and no others have reported similar issues.
I have gone through more skepticism since 1998 than I would wish on anyone. One visit to the ER some years ago, where I was struggling so badly I worried my heart would just simply give up – they decided before examining me that I was a likely drug abuse case, and ordered a urine test (which came back completely clean.) I don't now, nor have I ever been a smoker. I'm not now, nor have I ever been a drug user. I am not now, nor have I ever been a heavy drinker. I don't look sick. A theory the medical establishment is always quick to move to when easy answers to my problems don't present is anxiety and stress. It has been investigated and re-investigated. I've given these theories more than fair time, attention and consideration. More than anyone else, I wanted this to be just something in my head. Unfortunately, it is not. So says no improvement during/following runs of meds like Paxil. So says a court-ordered psychiatrist, so says a court-ordered psychologist. So too have said effectively *any* doctor who has spent more than a couple appointments with me and reviewing my case. So says my constant state of suffering for several years now. Make no mistake, that this has all destroyed us financially and in some ways emotionally is a very real issue, one that I will have to address when I'm able. But the mental and emotional side of things are a result of my physical issues, not the cause of them. Pride often keeps me from sharing with others just how much I suffer day in, and day out. For whatever wired reason, I don't like appearing weak and/or sick, and this has caused confusion with friends, family, even doctors.
I am getting worse. Atrophy is becoming a problem. With each passing month, I'm able to do less. There are no 'breaks' in this. I've left my house on foot *one time* in 2005. Got so fed up with everything, I walked out to the mailbox and back. I paid dearly for that for a few days afterwards. When I say I'm bedridden, I mean I live there. Exertion always comes with heavy costs. Every day. I take baths because it's too hard to stand in the shower. I lean over the sink to brush my teeth because the whole process comes at such a cost. I don't talk to anyone on the phone, because of how my problems compound the more I use my voice. I can't get out of here to get my teeth fixed, no matter how excruciating the pain. I had to sit home by myself when a dog I had been with for a decade was put to sleep at a relatively young age because of cancer, my wife was able to be with him. Ear infections and problems with my teeth sometimes force a liquid diet for days or weeks. Chemicals and man-made perfumes literally choke me. Magazines have to have cologne ads ripped out before I can view them. We used to bring in almost $130k a year. Now, entirely unable to find something I can do from home on a flexible enough schedule to be manageable, I am completely without income. Jo/Longwood, forced into a nursemaid-type role, always has to be careful about how long she's gone from the house because of how little I'm able to do for myself, has a job online that brings in about $24k a year. My house has gone into foreclosure twice, we managed to save it because of a death in the family and money that resulted from that, but barring some sort of new deus ex machina-like element, there's effectively no way we can stay in here, so we will lose it. (Well, lol, obviously we finally did).
I struggle to breathe, and deal with intense pain, every single day. Because I have no choice. I have no quality of life. I get by on Sudafed, Benadryl, Zantac and Breath-rite nasal strips. Anything I can do to keep my sinuses open. The meds every 6 hours without fail, with infrequent but prolonged periods of abstinence intended to sort of purge all of it from my system. These are always very difficult, but then who knows what something like pseudoephedrine every six hours, every day, for a few years is going to do to a system.
Exertion is nearly impossible. Even the smallest amount has a direct and severe impact on my heart and breathing. I can try and describe the progression of events. I will stand up, and start moving, and almost immediately, breathing is a little more difficult. I assume that’s from the pectus, with my lungs filling more of my lower chest cavity, where the skeletal ‘changes’ have created such a marked restriction. In any event, I’m now fighting sinus restriction, and the ‘bear hug’. There’s only so much air I can move, that doesn’t increase well, which is why there’s a compounding effect as I exert. Even in the smallest amounts. So as I start to move, I’m doing an increasingly worse job of oxygenating. Within a few minutes, I’m going to start developing a headache. A few minutes later, this is going to start being significant, and I may start coughing a bit, or might start drawing in sharper breaths trying to compensate for the lack of air. I’m still ‘functioning’ at this point, but it’s usually about where, say, if I’m in the shower, that I’m quickly trying to wrap things up, because I know it’s getting close to an uglier phase. Which is where everything already mentioned is worse, the headache is particularly bad, but now the palpitations have picked up. Often accompanied by some chest pain. My heart is now working harder trying to keep up. The specific arrhythmia is hard to describe, but it’s often marked by a ‘skipped beat’ sensation, sometimes something worse. A few different things can happen at this point. I can often start to see spots in my field of vision, I attribute this to elevated blood pressure, but sometimes it can also lead to tunnel vision, and a few times my vision in one or both eyes has gone completely black from it. All a question of just how hard I push myself to stay up and keep moving. While that’s happening, in the worst moments, I can start to become a bit incoherent. It’s suddenly much harder to form sentences. Hard to explain, that, because I’m generally not nearly aware of it as those around me are. Jo and Vince could probably better explain. At this point, regardless of what I’m doing, my body temperature is running very hot. I am clumsy, finding it hard to maintain balance, difficult to find sturdy footing. Physically at this point, it’s likely my lower extremities are swollen. My feet in particular are often red, and perceptibly swollen, likely from more blood collecting down there than probably should. But I’m still moving. Somewhere in here, that heat I mentioned earlier is gone, and I am cold. Cold to the touch, my face feels cold, it’s always accompanied by a ‘cold sweat’. I’m always very pale at this point, and somewhat sluggish. Harder now to make things work the way they should, hard to grip things, I may no longer be speaking at all. Single words are very difficult, at this stage I just need to lie back down. My chest is often in screaming pain at this point, and when I have the numbness/tingling in extremities, this is usually about where it is. My head feels like it’s going to explode. Too much inside my skull, I feel like cracking it open might help relieve the pressure inside. My heart is not doing well at this point. My breathing is shallow, in forced little clips. My sinuses have likely been 100% blocked for some time now. But I know I just need to lie down, and give my system time to recoup. There’s a point I haven’t pushed past with this little exercise. Can’t really define where it is, but it’s at that ‘cold sweat’, disoriented, clumsy, incredible headache, sort-of-incoherent state. A bit before I’m like that, my EKG isn’t normal at all. I’d have to find the paperwork from the hospital visit just before the move back to Ohio, but I’m showing both electrical and blood-level (something elevated, forget what) signs that patients do during or after a heart attack. I don’t believe I’ve had any heart attacks, but 100% of the docs I’ve seen in the last year, even casually, have voiced more serious concern about a stroke. I am, one suggested, just sort of on stand-by for a serious cardiac event.
Anxiety during all of this? I know what to expect. Sometimes it’s a little better than normal, sometimes it’s worse. I always know that I’m in control of it though. At any point, I can lie down, and just try and focus on even breathing. Just close my eyes, stop exerting, and stabilize. Sometimes it takes hours, and I often ‘pay’ for the exertion with a horrible headache that stays, sharp pain behind my eyes, bad/distorted vision, etc. I’ve just been going through all of this so long, that it doesn’t really hold a lot of novelty or anxiety for me. I perpetually struggle to breathe, at the worst moments, I know I’m having to fight my psychosomatic nervous system a bit. Your system just wants to tense up and react when you’re being suffocated. But you know, you get through it. I learned *very* early on, back in the early days when I didn’t know how bad an ‘attack’ would get, back when I didn’t understand what was happening to me, that if I allowed myself to panic, that everything would be far, far worse. Back in 2000-2001, when a lot of the new severity was still very unfamiliar to me, we ended up in the hospital during the worst episodes. These were often wasted/pointless trips. The process of lying down in the car, lying down at the hospital, just not exerting, generally had me feeling better before I was even seen. Which, of course, makes you look like a bit of a nutcase.
Anxiety can be an issue, most of the time I manage it pretty well. Emotionally, all of these issues come at a cost. I’m easily angered, perpetually frustrated, and certainly a little bitter. I feel that I’ve wasted years of my life that I can’t get back, because of bureaucracy and ignorance alone. I hate, literally hate, many of the doctors I’ve seen who I feel could have, and should have, done more. The Mayo in particular took well over six figures from myself and BC/BS, combined. Not only did they not do anything for me, but they tossed me from department to department just killing time and building up bills, and then hid my medical records from me for years afterwards. The very records that actually told a story. The pectus. The loop restriction. Other significant issues – all hidden from me, and therefore hidden from other doctors and the social security courts – for reasons they’ve made clear they’ll never disclose. Only a new Florida law compelled them to release all my documents. It wasn’t until the end of 2005 that I finally had all the info from them, and I know a few things are still missing. Specifically some meetings with the head of Mayo’s rheumatology department, some specific bloodwork (that I believe to be unremarkable, so I don’t know why it’s not there), and specifically some write-up on the lung nodule. An evaluation of a lung xray done that talked about the opacity. So stress and anxiety? Very real. The cause of my problems? No.
I always ride it out now, and obviously, am still here for it. The trip to the ER before the move was an exception. Dust and heat combined with everything else, and I was in a rough way. Specifically, showing the exact heart-signs that a few docs had warned me specifically about. When the chest pain would not go away, and my rhythm wouldn’t normalize, we decided to take me in. But when we got me upright and moving, I couldn’t maintain any balance whatsoever. My head was about to explode, and everything magnified from the effort to try and move. We called for an ambulance. They came out, got me out to the truck, and after hooking me up with oxygen and getting into a vein, they gave me nitro. The EKG was out of whack, the blood was showing the elevation I mentioned before. The x-ray showed that basically the entire bottom half of my lungs were being restricted to the point that they showed entirely opaque on the film. But what to do? They couldn’t do anything to open my sinuses back up. They couldn’t do much of anything, except give me time in a fixed environment. They monitored for a while until my heart activity seemed to stabilize again. They told us not to try and move on Friday (this was on a Wednesday, I believe). When we made it clear we had no choice, she told us that we better know where all the hospitals were on the way up. I asked for something that would help me sleep, and make me care less if there were some sort of major event/catastrophe during the move, and she prescribed Xanax. She also sent me off with a new bottle of albuterol, as a “probably won’t help if things get ugly, but can’t hurt, so take it just in case” measure. She was glad we had rented an RV, and told me not to push anything, even just a little bit.
The Xanax was great. I did sleep. We had an unfortunate incident on the trip where the AC broke down while in heavy traffic. The interior environment quickly got hot, the air thick and harder to move. This closed my airways off almost immediately, but what to do? Just rode through it. The med simply helped me do what I do, which is stay comfortable, physically relax, and just ride through it. We got the AC fixed, kept on going. Jo’s dad had come in to do the driving. Jo monitored me during the trip. Vince drove our Jeep behind us. We made the trip without any major incidents. It took me about 3 weeks to ‘recover’ back down to my normal baseline afterwards. Those weeks being some of the most miserable I’ve spent in some time. With pain, my airways, and general inability to do anything at their worst points.
CURRENT THEORIES/THINGS TO BE PURSUED:
Multiple Sclerosis, amongst a range of other issues, have been put forward as the most likely ‘name’ for my problems. Lupus has been suggested more than once. As have other rheumatoid diseases. Sarcoidosis is yet another.
Given the more recent neurological symptoms, a doctor we talk to from North Carolina has urged me to get in for an MRI and eye exam as soon as possible. He's very interested in pursuing with Multiple Sclerosis, Guillaime-Barre, a stroke, a tumor, or some other brain event.
It's been suggested that this is all fall-out from the trauma I went through when I first got sick in 1998. That my immune system is on a rampage against me, and therefore isn't bothering with infections and such.
My mothers father is currently dealing with colon cancer. My mother recently had polyps removed from her own colon. My family has a few cases of Wolffe, Parkinson, White Syndrome (have to check the spelling on that), including my younger brother (Vince/vrbryant) who, at 23, has been told he can really only address it surgically.
My battalion in Hawaii had an unusually high number of testicular cancer cases. Could be random chance, could be something we were exposed to. The lumps on my right testicle have to be better checked out at some point.
The nodule in my right lung was considered likely to be scar tissue at the time. Never had a chance to follow-up, but another CT will probably be necessary at some point to make sure that it's still as it was when first discovered some years ago.
DIAGNOSING:
I meet and/or EXCEED medical community standard diagnostic requisites for both asthma and multiple sclerosis according to multiple standards.
For real world purposes, the 'name' of my problem means nothing to me. It's the impact that limits me. For the medical and legal establishment, lacking a name almost seems to force the assumption that it doesn't exist.
I *have*, with documentation to prove it, the following;
- Pectus ‘deformity’, relatively severe, just not visibly/physically apparent.
- Chronically infected sinuses, with almost entirely restricted airways. Both turbinates being the worst culprits.
- Scarring or some sort of growth on my lungs. 5mm only showing up in CT scans in 2002. Visible on x-ray now.
- Some sort of larger opacity in my lungs. Right lobe is most often mentioned. It's also been described as being both lower lobes. What sort of opacity is unknown, and requires additional examination.
- History of chronic ear, nose, and throat infections. Viral, bacterial, even a few fungal.
- Highly elevated anti-nuclear antibodies in my blood.
- A noted ‘restriction/obstruction’ in the loop test/pulmonary function.
- Abnormal ECGs during ‘problem times’. Q-wave issues, I can’t be more specific.
- Elevated troponin during an ‘attack’. “Above the threshold determined for the diagnosis of myocardial infarction.”
- Mitral valve prolapse, which now seems to be gone.
There's more for that list, and I'll add to it as it comes to me.
What we *don't* have is evidence, further research for the following;
- Need (according to docs) an MRI, eye exam, spinal tap, colonoscopy, stomach scope, new pulm function tests, complete chest CT work-up, a new echo on my heart to determine if there has been scarring, have been MIs. New blood work, testicular and prostate exams, urology workup, sinus surgery, and of course major dental work.
- No explanation for the chemical sensitivity.
- No explanation for the total and worsening inability to exert.
- No explanation for the constant infections.
- No explanation for the neurological issues.
- No explanation for the lung scarring.
- No explanation for MVP coming and going.
- No explanation for my continued decline.
According to the government. I'm not sick, there's nothing wrong with me. That always makes me feel a bit better.
At my current rate of decline, I think I'm looking at a major heart attack or stroke within the next 12 months. Sounds like a ridiculous statement, but there's a natural pattern to my decay, and I personally see it turning unmanageable (on a permanent level) in that time period. 18 months at the outside. Longer if I continue to do what I need to do to "get by". Shorter, the more I'm moved around, stressed, poked and prodded. To say that we need appointments that require moving me out of the house to be productive and meaningful, would be a gross understatement.
Putting me in a car and getting me anywhere, is dangerous. It's really that simple. Obviously it's going to have to happen. If and when the Ohio courts ever get their asses in gear and start hearing my case again, I will have to go to court, I will have to go and see their docs. My guess is it will be one of those trips that will be the proverbial straw, but what the hell, shit has to happen for their to be a chance at anything.
I am not a melodramatic person. I don't like attention. I don't like exposing my personal issues to a lot of people. I don't like being so weak and so broken. It all is what it is though.
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