now what?

Hello again. Well, I guess it is back to the drawing board once again. I went to the rheumatologist (I can't ever spell that right), today, and she was really nice, but yet again, I am coming away sans diagnosis. Well, I have a little one, possible metabolic myositis, which is very rare. She thinks, and I hope, that this last episode that landed me in the hosptial twice, may have been some funky reaction to meds that I have been on for years, but just "turned against me". Basically, these are statins for high cholesterol levels. She is going to suggest to my doctor, (but said that if it were her, she may just wait to see if I have another episode), that there is an expert in this at Dartmouth that I could go see. I think I will wait. I really don't care anymore.

I continue to think that what I am having is a combination of ehlers daniels syndrom (EDS), fibromyalgia, and dercums, with a smattering of osteoarthritis thrown in for fun. At first she said that my knees showed no signs of arthritis, (from her physical exam), but then I told her my MRI and orthopedic surgeon say differently. She pulled up the MRI, and said...."well look at that, you do". However, because I am sooooo flexible, it just doesn't look like I have stiffness like you would find in typical arthritis knees. Yep, that would be the EDS, which she agreed. So, I am relieved and also kind of mad. It is that strange place of wanting it to be something that can be treated, so it will go away, and glad it is nothing that is serious and can be treated but means more meds, more tests, etc.

Because she was so nice, I decided to ask her some other questions, like....can this just be some strange genetic mutation that is just me? She shrugged. I am beginning to think this. This happens all the times, and I drive doctors crazy. I get these whacked out lab results, or test results, then months, weeks, days, hours later....they are back to normal. Amazing healing abilities? Maybe. Ok, here is where it is going to get either very informative, strange, or entertaining.....but, I think I am the liver of the world!

Really! Sometimes, I think that everything just passes through me, and I heal it...but in the meantime, I pick it up. Is that really any crazier than dercum's, or fibromyalgia, or the common cold? My whole life has been about suffering. I won't bore all of you with why I say that, I am sure some of you who have known me would agree, and others are scratching your heads and wondering WTH is she talking about. The fact, that I think my whole life has been about suffering, yet here I am, fairly intact. Fairly able to laugh with the best of them, and avoid crying with most of them....well, I think that says something. Does it say I am strong? maybe Does it say I am just nuts? maybe Does it say that I am just focusing on the bad, and maybe everyone has this, I just pay more attention to it....(believe me, I have heard this).....well, that I don't think so.

So, now we go back to the narcotic pain killers. Do I need them? Well, I think so, but then again, how would I know, as apparently they trick you into thinking you need them. That is the "current thinking", so says many of the docs. Well, I am about at the point of saying, "OK, lets give that a try". God bless me for even thinking this! I know what my life is like without these evil little pills. It SUCKS. But, ok, maybe THEY have a point, and I do not know what I am doing. If I can pull up any amount of bravery, the next time I see my PCP.....I just may explore this, and do an experiment. If he will agree to detox me in the most unpainful way possible (I have been on these things for years, I don't think detox will be pretty) even if that means some rehab (and hopefully one that can work with chronic pain, not just chronic abusers of meds), then I might, just might agree to do a little experiment. If I do this, I don't think you can expect me to be very "around", but who knows....maybe it will be the answer. I don't know. I am just as confused as everyone else.

In my heart of hearts, I don't think that what I have is your common garden variety fibromyalgia. I just don't. I do think it explains some of my symptoms. I think that Dercum's explains many of my symptoms too. But, I just want my life back. Ok, so if it is the narcotics that are robbing me from my life....then lets get rid of them (she, the nice new doc suggested this may be the case, but did say that with, well, that is what is in the literature currently) hmmmm, I wonder, how much influence does the DEA have with that literature? But, who am i to question those who "know"?

I certainly have well meaning friends and family who think I should get off those "horrible" things. I don't know, who are they listening to? They are what makes me functional. But, right now I am barely functional with them, so why not go whole hog non-functional and see what happens? Well, fear for one answer. Pain is not easy to live with my friends (as many of you know), I fear that I will just "go away". I can leave my body pretty fast, and my fear is that I may choose to leave it, and just not return. No, I am not talking suicide or anything like that, I am just talking the ability to disassociate. I learned that as a child. Nice tool to have if you don't mind sitting and staring into space with a blank look on your face.

This is such an ever lasting, on going, time consuming battle in my head. And people think we like to take these meds! I don't know. This is yet again, one of those posts that I should probably chalk up to, getting my ya ya's out, and not for public consumption....but then again, I know not just me struggles with these issues. I bet, there are many of us out there who would just like to have a life that is filled with love, laughter, joy, happiness, contentment.....isn't that what everyone wants. Ok, now I am crying.....for I just don't see that in my future. Not to the degree that I want it. I see me coping with this pain, I see me having moments of joy and happiness, and of course laughter (cuz I love me some laughter), but I don't see it as sustainable. That is what scares me. NO, THIS IS NOT DEPRESSION SPEAKING....I think it is reality speaking. I so want to work again, to be out amongst the public, as most of you know, I am pretty darned extroverted (except when the pain and fatigue make me very darned introverted, but that is more like a forced state of being). But, I don't see that happening. I used to. I used to think that there was something i could do......but, that hope has slipped away. Well wait, not that it has totally slipped, I mean, I don't ever seeing me doing the kinds of jobs that I want to do. There is probably something I can do, if it is very flexible and accomodating????

Ok, I can't take up anymore of your, or my time with this......one of these days, there will be someone who will come up with an answer. Patience, is something that I have. In fact maybe to a fault....but right now, there are Monks in Tibet praying for me, who don't even know me, there are people who are working to figure out what is going on with our bodies/psyches/souls and how they all connect.....I think they will figure it out one day. Until then, I will continue to pray, to be a "liver" if that is my job, and to hopefully keep laughing.....cuz that really is the only medicine I like to take!