Hello, everyone. Apologies in advance for a decidedly long post. First, a very brief introduction. I'm thirty-two years old, live in Rhode Island with my wife, no kids, no pets. I installed CatchMyPain around two weeks ago as a means to finally start actively monitoring my various issues. I've since been perusing the community, deciding whether or not I myself would post. I've never liked sharing my grievances or burdens with people, because I feel that when you do, you share your weight with them, which only serves to add to the load they themselves already carry. But today, I reached the point where I need to share.
My wife and I were married in July of 2005, and we were as happy as newlyweds can be. In November of the same year, I fell ill and things went downhill fast. Dozens of appointments with primary care, rheumatologists, gastroenterologists, neurologists, the whole bloody collection. They poked, prodded, did a whole checklist of blood panels and other tests, and came to the conclusion that I was developing an auto-immune disorder and "something else". Initially, my wife was very concerned and wanted updates after every appointment, but I quickly became bitter and cynical with each new visit, tiring of the "let's try this and see what happens", and "eh, that wasn't it; let's see what this does" discussions. As a result, she felt I was simply being overly negative and withdrew from the matter. It was some months later when they finally decided to diagnose Myasthenia Gravis, Fibromyalgia, calcium oxalate kidney stones, on top of the ocular migraines I've dealt with since childhood. Since she has such a kind heart and a sensitive soul, I chose to shield my wife from the whole of the truth, to spare her from having to worry. Some foolish white knight mentality, I suppose, mixed with the aforementioned not wanting to share my burdens.
The problem is that with the dismissive nature of the diagnoses (except the kidney stones, that one was pretty definitive), along with the timing of us moving back to Rhode Island from Hawai`i, no action plan was formulated. I resolved to just deal with each day as it came. Unfortunately, this turned out to be a damned fool thing to do. Instead of explaining to my wife how I was feeling or what was wrong, I started to withdraw and just be miserable. She would want to go out with friends, and instead of saying "I'd like to, but [...]", I started saying no to everything. Most of the worst symptoms entered a remissive state, leaving just the perpetual headaches and migraines, inflammation in the hands, and leg pain to deal with. My family has an interesting tolerance to medicine, with characteristics that include either something working great the first time then never again, functionality steadily decreasing per dose, or no effect at all. I was able to maintain a functional state for some time, helping myself to an as-needed buffet of naproxen and acetaminophen. Everything flared back up in 2009, again in 2011, and now in 2016. Episodically speaking, this has been by far the worst; instead of being plagued for a few weeks per bout, it's been the last five months straight.
My marriage hangs on the precipice because of how miserable I've been and how detached my wife has become. Another effect of my health overall is that my wife and I haven't had children yet, though we both want to. Expending all my energy trying to wear the "everything's fine" mask, I've lacked the wherewithal to want to spend a night rolling in the hay. After a period of each becoming increasingly distant, we had a sit-down at the table and bared our souls. I told her all of the problems I've been dealing with and hiding from her, and while she was incredibly pissed (can you blame her?), she wanted to help and support me. Finally shedding some of that burden gave me the strength to crawl out of my spiral of pain and misery, and try to be more active in trying to fix some of these issues. I had been letting my health control me and us so much, even I didn't realize how far it had gone until this point. Cue CatchMyPain. Between trying to keep track of pain and symptomatic behaviours, marking pain/symptom/fatigue levels on the calendar, and compiling my medical history on handy spreadsheets for quick distribution to doctors, I've finally been pushed in the right direction. Here's where the story falls apart.
Today, I saw my primary care about all this. Third one I've had since being back in Rhode Island, as the first one insisted, despite the inability of my left leg to support my weight, that nothing was wrong, and the second would leave me voice-mails in a tone of voice indicating I had hours to live, just to tell me "oh, there was one blood-work result two points outside the normal range". I brought my iPad to show the charts from CatchMyPain, printed out my symptom and history spreadsheets, and was determined to finally make some headway. That lasted all of two minutes. The neurologist had ordered a blood panel a few weeks ago, and my B12 level was slightly south of good. This resulted in both neurology and primary care leaving me voice-mails about getting B12 injections, because the world could end otherwise! So, that's where the doc started in today. "Balancing your B12 should resolve most of the symptoms you're complaining of". This despite my repeated attempts to state that these problems have plagued me for ten years now (happy anniversary to me?), and one vitamin being low in a single snapshot of time doesn't mean a damned thing to the overall picture. She also spouted, fumed, and fussed about the fact that I take 6-40 220mg naproxen a day, even though I'd told her that in previous appointments, insisting I stop taking it immediately "or risk severe damage", but refused to provide an alternative. To her, everything was hinging on this bloody B12 injection. She also stopped reading the rest of my spreadsheets at that point and went on a tirade about anti-inflammatories having a plateau of usefulness. Again, no useful alternative. I didn't even bother with the pain charts by this point, as I realized she was bound and determined that her word was final and I must not know my own issues.
So, I left feeling rather cross, with that old familiar "this is why I don't go to the doctors and try to ignore my problems" venom in my heart. I truly want to get on the path to managing all this properly for the sake of my wife's happiness, but I'll be damned if examples like today are a good start. It's that feeling of getting to the last rung on a ladder just to be kicked in the face. I'm refraining from picking up a bottle of gin, which is incredibly tempting right now, and have settled on writing this verbose first entry. I'll be honest; I don't know what to expect from sharing all this. Maybe just the relief of finally venting some of my frustrations, maybe not. Who knows? If you've managed to read this far, I appreciate your taking the time. I reckon this has been enough of a rant, and will close this session here. Thank you for reading, and if I haven't withdrawn back into my shell, I'll try to be more conversational and hopefully more pleasant.