So, I've got my next appointment tomorrow morning to see my regular doctor. I'm writing what I want to discuss all down here in the hopes that it will help keep me focused.
1. The extreme exhaustion & chronic pain is back with a vengeance.
They were starting back about three months ago and six months ago - just barely. Three months before that? I felt freakin fantastic. So, what's changed? Well, six months ago I was having trouble remembering to take my supplements. I've gotten better about it since. Not great, fantastic take them every day better.... but better. But, I've also stopped taking two supplements. One - because blood tests showed that my levels were fine, if not great (Vitamin D). The second - because the doctor tells me not only does he have NO record of me ever having low levels, he's never EVER ordered a test to monitor those levels (potassium). Just great. Potassium is one of those things that you should NEVER take nonchalantly; should always be monitored. AND since it was his nurse who phoned me telling me to start taking those supplements because my levels were low; well, guess who thought he was monitoring them. Guessing this was a mistake. I stopped taking those immediately.
So, my thought is that since I'm better (not great) at taking my supplements, but my symptoms have gotten worse - I want him to test me for Vitamin D Deficiency (cause, oh, I don't know, maybe my levels were good because I was taking the supplements????) and Potassium deficiency. Either one comes back low, I go back on supplements and see what happens next.
2. Finding a local Dr. House... I'm still planning on saving up for a trip to NYC... to possibly see the "real" Dr House... but I'm still a bit leary. It's a long ways to go to see a specialist who is self-proclaimed good at diagnosis... but there are no guarantees in life. I'm going to ask my doctor to ask around & dig around on my behalf and try to get me to someone around here who is adapt at finding the cause of symptoms. I've tried digging around online, but honestly? "every" doctor claims to be good at diagnosis - after all, that's there job, isn't it? But, to be great at it? Well, that means people like me are going to seek them out... and people like me present certain - well challenges. We have complicated issues with lots of weird non-explained symptoms and most doctors? Most specialists? Are kind of ok with telling me.... "I don't know what it is".... not happy to tell me it, but basically it absolves them of digging further. If they don't know, they don't know and they can walk away knowing they tried. But, someone claiming to be excellent at diagnosis? Well, they don't have the same option. If I was easy to diagnose? we would have figured something out years ago. And well, if he can't find anyone - it's not like I still can't try the guy in NYC. Heck, if he finds someone I still might try both... it's just money - right? sigh
3. I want to quit taking my blood thinner - coumadin. I do, I seriously do. I was thankful to be put back on it when everyone thought we knew what was most recently wrong and when it seemed to be working. Now that we've virtually ruled it out... well, I'm not so keen. No seriously - who doesn't love going to the lab on a weekly basis to have blood drawn? Who doesn't love monitoring every bite you eat in the not quite lost hope that if just this once, it's stable from one week to the next, you might get to skip a week in blood testing. And lastly? Now that I've lost so much feeling on my right side? It's just plain dangerous. I related a tale recently where I was unaware I was bleeding from my lip. I didn't feel the blood dripping down my chin... I didn't feel the dampness on my shirt as the blood soaked through. I had NO CLUE. And, thankfully, it was a minor bleed... but with blood thinners? Lost of sensation is risky. I could have a more serious bleed occur and I may not notice it in time to prevent significant blood loss. This is NOT a good thing... not a good thing at all.
I've been to a LOT of doctors and until my last symptoms started fall of 2006; 5 out of 6 of the specialists did NOT want me on blood thinners. The Sixth one kind of had it easy - I was already on them for a "trial" basis; after convincing one of the first five that if we tried it for three months to no benefit, what was the harm... only I ended up on them for two years where it "seemed" to help. Now, it isn't helping at all.
This last one is risky; I know it. But, going back to the 5 out of 6 doctors - they didn't believe what I'm currently experiencing is associated with clotting. And they didn't believe that I was at risk for clotting again. But, there are no guarantees in life. If I clot again, I can only hope that it's a small, minor - however, easily detected clot that I can get treated for. I can only hope it's not as serious as the massive bilateral PE I had in 2004. So, yes, there's a risk. While I survived the first one, there's no guarantee I'll survive the next one.
However, there are two possible benefits to stopping couamdin... 1) Whatever I have, it's eluded doctors... if there is even the slightest chance that the medication I'm taking (which seemed to help initially) is masking additional symptoms or artificially affecting other test results - which while low probability, could still happen - then I'm more than a little willing to stop taking it and see if we can't get this buggered up shit figured out. 2) There's a possibility, slim, but there - that I truly am having health issues related to clotting... I've been tested to within an inch of my life, so it's a slim possibility.... but; if the blood thinner really is "sort-of" helping; removing the blood thinner should make my condition worse. (Doesn't sound like a very good idea when I type it out; but stay with me.) If my condition worsens... it might worsen to the point where they can friggen find the clots (since they can't find any now). Which if it did happen, it would prove the point that it is related to my clotting condition - which is not where we are now... and it would prove the point that I need to move on to other medication. Now, this would be good & bad news... good news is that new medication is more effective, which would probably solve my health issues.... bad news is that this is that expensiver than expensive stuff that I had to use before & after my knee surgery last spring. I believe the drugstore quoted it at $276/day. Yes... per day... Before insurance that's around $8,000 per MONTH.... seriously not great. But, if it meant a working cure and I could stop worrying about how much worse I'm going to get. I'll figure out a way to work with it. Thankfully, I do have "decent" medical insurance - and a maximum of $4000 out of pocket - I'd hit that in the first month and it would be free from then on. Not easy to manage; but I'd figure something out.
So, given that the current medication is not only no longer helping; but extremely risky to remain on.... and quitting the medication provides some hope that maybe, just maybe we might figure something out better without it? Seems like a reasonable idea to me.
So - positive thoughts - I will get better because I have a plan of action. Stopping this medication that requires so much of me WILL be a step in the right direction even if it causes me more distress in the short term.