I just woke up. It is 1:25 in the freaking afternoon! Of course, I think when I fell asleep it was around 9am, but still. I do not like wasting these days of summer. It isn't like I live in a place where we can take these days for granted!
It also isn't like I can say, oh well, I have the rest of the day to go do what I want to do.....it just isn't like that in my world. I just woke up, but it is going to take me at least, and I mean at least, an hour to move easily. My muscles/joints/fat...whatever....is all screaming at me. So, now, I wait for the pain killers to kick in. I should have taken one around 8am, but I missed that one....so now I am paying for it. Maybe you reader, maybe you are too going to pay for it, as I don't think this is going to be a cheery, kind of positive look at how to live with chronic illness/pain kind of post.
I don't think I have explained what it is that is making me feel this way. Partially, that is because no one really knows. I have a plethora of diagnosis, of ideas of well intended friends and family, and of internet based ah ha's. But, lets just go with the current "working" diagnosis (or whatever the plural of diagnose is)....
For many years, I have been going on the diagnosis of Chronic Fatigue, and Fibromyalgia. And before that, it was called fibocitis (but that was just one doctor many years ago who I thought was a quack, mainly because I didn't like that diagnoses, which turned out he was probably right). But, I have been getting worse. I have been telling my doctors that i believe I was getting worse, but...fibromalgia does not get worse, there is no progression to it.....so someone was not correct. (although I love my current doctor, there have been times..........) And of course that someone had to be me....as I don't know my own body, and apparently lab work doesn't lie.
But, I was getting worse. I could feel it. I was not wanting more pain killers so I could get high, that is ridiculous to me, as I don't even get high from the stupid things......but because there are apparently more people out there who do take them to get high,than who actually take them for medical reasons, I must be wrong. I must be wanting more, because those people out there who do get high ask for more, so they can get higher.......no, I JUST WANTED THIS FREAKING PAIN TO STOP. Now, if he were going to write his opinion of this, my doc may see things differently...but here is my take on it: he wanted to believe me, he did believe me.....but then, there are those other medical professionals who are saying look at those drug seekers, beware of those drug seekers.....and then there is the DEA saying....watch out, all those people are drug seekers, all they want is either to get high, or sell those drugs to people getting high......they are bad people all those people on pain killers....watch out.
" But but, this woman is nice, and she seems to be in sooo much pain, but wait, didn't I just give her a prescription the other day, and here she is asking for more...hmmmm, maybe those DEA/drug seeking believing docs are for real............" anyway, that is kind of what I imagine is going on in his head....but I know, the pain/fatigue/weakness was getting worse.
So, it did. It got so worse (I know that is not correct grammar), it landed me in the hospital two times within a 2 week time span.
The first time, they figured it was the narcotics. After all, it looked like an OD, or at the very least, it looked like my kidney's failed because I was so gorked out on the narcotics that I must have forgotten to drink fluids.....(my doctor was on vacation during this episode of my life), so get the kidney's functioning, take her off of her pain killers (well most of them, we don't want any nasty withdrawals going on), and send her home. (oh, how I got to the hospital in the first place, my friend came over the night before and I was not making much sense. So being worried about me, she came over the next day, and found me unresponsive, eyes rolled back in head, doing something that looked like seizing.....she called 911). I didn't believe them, I didn't think I had taken too many pain killers....but I had just been prescribed a more potent, and different kind, so maybe???, but it still just didn't seem right to me, but as we already have established....who am I in this story. anyway? I had read however, that kidney failure can make you delusional, so....I wondered???
Ok, round two: I am not going into the details....but two weeks later, I was feeling so sick, I didn't know if I was dying, or just wanted to....and I really didn't care. I was praying that God would just take me.....but, instead my prayers were answered by putting me in the hospital when my doc, the one who knows and seems to care about me....was on call. And low and behold, he did some sleuthing, and it was not anywhere close to me being on pain killers that was the culprit....but he also had no idea what was. What we do know: my immune system appears to be attacking my muscles, which then makes some kind of enzyme get into my blood stream and when it gets to the kidneys, they say "I can't handle that, I think I will just shut down". (ok, this is my version of the story.....again, I am sure my doc would have a few more words to use, those big doctory words that keep us from understanding what is really going on with our own bodies). But anyway, now I have a new diagnosis, but only a working one, as some of the tests suggest it is, and some say no way.....but for now, lets call it myositis. Oh, and by the way....yes, there is a reason for your pain! And, guess what, the pain killers had nothing to do with this problem, and well looky there.....you are taking them as prescribed. (that is not my doc's voice, again I think he is somewhere close to God at this point (although he doesn't think that, and that is why I like him). But, I have lots of other medical professionals in my head who deserve a good talkin' to! LOL....
Now, just for fun....lets throw in another diagnosis.....this is one I have come up with, and I think my doc believes, but I am not totally sure. I have had these wickedly painful lumps in my body for years. In fact, about 15 years ago, a rather large one formed and was so painful that at times I thought I would pass out. But, yet again, "this person has no idea how her body works, silly little thing, must just be wanting narcotics".......but OMG this thing hurt. They all told me, that it was nothing, it was just a lipoma, a fatty tumor (but of course I would have those, as I was [at the time] more than 100 lbs over weight) and, those don't hurt.....so, go way, and leave us to do some doctorin on those that really have problems. (please know, that my current doc was not in the picture at this time). But a few years later, he was, and by that time, I had named this thing "louis" Louis the Lump. The good doc would ask ever so often about louis, but, he could not figure out exactly what louis was, as lipomas don't hurt. well, yes they do....according to the internet and a diagnosis called "dercum's disease". It is listed as #3 on the NORD list. Which NORD stands for National Organization of Rare Diseases. (There are quite a few of us who have this, and we are banding together...so watch out you disbelievers!!!).
Ok, so there is my entirely too long explanation of why you will be reading (I hope) this blog of what do to when your body gives up on you (funny, that song to the show "COPS" was just being sung to what I just wrote: bad bod, bad bod, what ya going to do? what you going to do when it gives up on you, bad bod..." he he...
So, I am still going through tests, and being referred to other docs who have other opinions, but "at least it is something". Yep, at least it is something......and now that I have written this, maybe if someone is actually reading this, is maybe reading this and saying "wow, that sounds like me, maybe I should look into Dercum's..or Myositis".....then, maybe my day is also not so wasted!
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