Reaching, Scratching, Crawling, Begging, & frightened...

In my thoughts, and my feelings about this horrendous pain that I am in, along with WHY it is happening, and IF it could be the pain pump, where we go from here.......

Tomorrow afternoon seems like LIGHT YEARS AWAY!!! If it would do one bit of good I would sit down in the middle of my home right now and SCREAM, CRY, BEG, PRAY, BLEED, WHATEVER IT TOOK TO MAKE THIS FREAKING HELLISH PAIN GO AWAY!!! This is total INSANITY!!!!! I feel just horribly sick to my stomach it is so bad, and my doctor's office missed the prescription for my Zofran I asked for, for nausea when they called in my meds last week. I have just about taken all or even more than all that I can stand. This freaking is crazy. Here once again another birthday coming, and I am in hell from pain... life just is NOT fair!!!

I honestly am wondering about the entire scenario. Jim and I have been talking about it since early this am. I barely got any sleep with the pain and concern, and he did not sleep well either. We have discussed the whole thing and of course looking stuff up, there are things they do to see the "catheter" part, a fluoroscope, or possibly a CT scan to look at it. I guess an expert could see if it was in place or not, eroded, leaking, and so forth. They can also probably run a special dye in there to view the actual medication and see if it looks "crystallized". Another thing Jim mentioned is the possibility of the medication being mixed wrong. The medication starts our as a powder. It has to be mixed with certain other liquids and shaken up a certain amount of time etc to keep it from crystallizing. Well, all of that is really difficult types of math that they use a certain amount of so many liquids with a certain amount of the correct powder, which even the powder comes in different "strengths". So, if while I was there having it refilled the pharmacy at the hospital accidentally mixed up the "weaker" dose, and/or etc. it could be it is much too weak, maybe even half of what I should get. Well, that would make total sense as to why I am in such a world of hurt as I am. Also, if you research the pumps, of course failure is rare when you consider the number of people etc with them. But, it does happen. Usually it is the catheter that is an issue if anything, but the likelihood of that was rare even we felt without me getting some type of "warning" from the pump itself. Yet, they have had battery failure in some. In fact one of them was about the time mine was implanted. As I supposedly was told and found out, mine was not included in the "recall". But, it was along that time that for some reason the battery would develop a "film" on them from the body making it, and it would stop them from working. Like I said, they have every kind of set up in place to let you know if you have a failed pump BUT as before Murphy's Law for me, plus the fact, that as incredible as these are, they are "man-made". They are also computers. We know all too well computers can have their own "mind". They can do all kinds of very strange things to make you think they are almost human in themselves. They can be obstinate, temperamental, contrary, and down right stubborn. They can pull some stuff you would never think could happen, thus it is a computerized machine. Even at that, and even if they find out it is my pump, I will say over all, I think I will with no doubt continue to have one. My life went so much back to whatever somewhat "better" and half way normal was after the pump was put in, that I cannot see myself even attempting to try and go back on regular oral medications. In the first place, there is no way they could give me enough to keep me comfortable without zoning me completely to oblivion. So, the situation is even if there is an issue with it, even thought I DO NOT want another surgery, especially this week on my birthday, I feel the pump is the way to stay for my personal situation. I see the doctor in Dallas at 2:30 this afternoon. So, keep me in your hearts, spirits and continued prayers... I so am humbled by everyone's blessings....



UPDATE 2/12/2013

Well, here is the deal right now. I saw my pain specialist yesterday FINALLY at about 3:00 pm in Dallas. He was in fact EXTREMELY CONCERNED! So, that in itself was a good thing. I knew he was taking me very seriously, and he will search until we resolve this whatever is going on. In the first place, he knows me so well, he knows I must be in one hell of a shape in pain to come to the office like that. My pump has been a God Send, and for me to suddenly develop this severe of pain etc. he said he knows something is not right. He checked the pump and talked to me extensively as to how, when, etc.. this began. We talked about the last refill which was early January. He checked the pump with his computer that reads it, and it shows that the pump "is working" supposedly. It did not give him any errors, and showed that the medication amount was "going down" properly as it should. BUT, like we said, that may not mean anything, and that it might not be doing that. That is just what he initially saw. From there we discussed the possibility that the medication he refilled it with was wrong in January. Since this all seemed to come around about the same time, it is a huge coincidence, that it would do that. So, his 2nd thought is that either there is "Nothing" in the solution, and the pharmacy at the hospital where it is mixed screwed up, and I am basically not getting medication or much at all. Which is dangerous as hell to be blunt. 3rd I could have something totally "new" going on. He said of course due to the "viral" type of symptoms I had weeks back feeling like I had a very bad case of the "flu" may be something that set off other issues, and something could be very "haywire" between some kind of viral syndrome, the Lupus, RA, etc... reeking havoc with my body, that might cause a huge more amount of pain that I usually have. Then since I do have osteoporosis, DDD, etc... I may have something that went wrong in my lower back suddenly that I would not have even known, like I could have some vertebra that suddenly "collapsed" onto one another pinching the nerves and would cause this kind of extremely acute pain. I show signs of weakness especially in my right leg. SO, he is ordering a CT scan of my lower back to make sure we are not dealing with something totally new, and also an EMG of my right leg. Then he is going to pull out all of the medication that is in the pump, and refill it with new stuff on Friday. Of course that will tell us a couple of things, whether the pump is working or not. And more importantly, if the "medication" is what it is supposed to be or not etc. If I begin to see relief after about 8 to 12 hours or so, then we know something was WRONG with the solution that came from the hospital pharmacy where he fills it. Or if nothing changes, then we either have a catheter or pump issue that is not registering, OR we do have a new situation. (I DO NOT want the last for sure) or honestly the 2nd, because if the pump has an issue that means surgery to replace it all. So, we have to go through all of that, and guess what, Friday is my Birthday!!! So here I am having to deal with this on Valentine's Day and my birthday week... which sucks. Also, and this was important, he gave me oral very strong pain meds to try and "calm" down the horrid pain, as much as he can, because we do not know if I am getting some, not getting any etc... thus he gave me an immediate action type of high powered pain pill that I can actually take every 5 hours to help me until we can get to the bottom of this. I am kind of fearful of it, just due to I already run a lower blood pressure and heart rate, but he says due to the extreme type of acute pain I am in, I will be fine taking them, I just might be a little "goofy"... well hell I am already goofy, so what is the difference about that one. Anyway, there is all of it in a nut shell. I took a pill late night when we got them, and I did notice what I thought was a tiny bit of relief. Now I did not sleep worth a crap, but neither did Jim. We are both so totally stressed about all of this, sleep is just almost not possible but to dose off for a little while or so. I am in such appreciation to everyone, and keep my Mom in your prayers also. She is VERY UPSET over what I am going through, and she was in sobbing tears over the phone when I called her yesterday to tell her what was going on. So, I fear I am harming her health, and I feel so terrible that here I am, supposed to be taking care of and worrying about my Mom, and instead here she is so worried and concerned over me. So, let your prayers shine down on all of us.... :) Hugs, Rhia
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