The Bad Days and The Good Ones...

Ah, even though this blog is dedicated to the realms pain, fatigue, illness, and the long road of getting through the maze of medications, doctors, test, and just "living" one day at a time with Lupus, and the entire gamut of all of my chronic issues with health, I find myself having a difficult time talking about the "bad" days. I want to encourage others that they CAN have a somewhat normal life. I want to tell you that you can overcome some of the pain, with your own mind, and with much help from doctors and medications, all of that combined with exercise, taking care of yourself, trying to stay as much out of stress as possible, and having the support of family and friends, life can feel normal on many days. But, there are days, (like yesterday) for me, that I just cannot make myself get up and go. I am too fatigued to move, I am in too much pain to try to clean, do laundry, to even think about writing a grocer list, or the idea of even getting dressed is way off the beaten path. Little things, when I am so exhausted, seem like monumental tasks to me.
I have myself somewhat on a "daily schedule". I have a certain time I get up for the most part, certain things I do at certain times of the morning, from taking my medications to exercising, I try and keep on a schedule. That keeps me moving forward, rather than stepping backward and wanting to wallow around in the "pain" and suffering of it all. I hate to think I gripe too much about all of it. Lately though, I have just felt the need to really let out all of the anger and frustrations that follow you like a shadow constantly when you are plagued with a chronic illness. things other people do, and take for granted as being a part of their day, could be something for one of us, that is a task way to huge to even think about on a particular day. That is part of the reason why the deadline of my 2nd book is looming, and I fear may not make it. It is not just about my own health issues, but now I face things with my Mother, that we are not sure about. IF some of these tests come back not so great, that may mean months and months of totally tending to her. IF she has to go through a major surgery, she will be very weak and not able to do lots of things for months. So, I also have to take that into consideration. I am also facing my own dilemma, with the double vision crap. I now have seen three doctors, and am set up to see a 4th one in early April. Yet even being specialists, not one has really been able to point their finger to what might be causing me all of this new grief. The symptoms are many yet vague. When a patient comes in complaining of "severe" leg pain, down the flanks, and down the thighs, yet it is also down the backs of the legs, to the point the bottoms of her feet hurt, that in itself could be several issues. It could mean kidney stones, sciatica, my RA acting up, issues with my spine, etc. But, the key issue is that I have a pain pump. These NEW symptoms are breaking through the pain medication that keeps me out of pain, thus it is severely acute pain, as if I do not even have a pain pump, or pain medication. So, that puts the entire situation in a new light. It could be pump problems, medication issues, catheter issues, all kinds of other added problems to complicate the entire gamut. I had already been to my PCP about it, in fact twice. I had a kidney infection, that they treated me for, thus I figured there was a good chance I had stones. But, rather than go through an expensive scan, which would not do a thing but tell us if it was stones, I took the antibiotics, drank my cranberry juice, and hoped that it would clear up. Yet, the pain kept on. I chalked it up to the "flu-like" problems I had for days and days before. I felt all kinds of the typical flu symptoms, achy joints, back, tired, fatigued, kind of not really having an appetite, just general aches and pains of the flu for about 10 to 15 days. That also told me that I probably had a "flare" of the Lupus on top of it all, would only would exacerbate all of the symptoms, make the fatigue and pain in my joints and muscles worse, thus I tried to write off the more pain that came onto a severe Lupus Flare. After over 2 weeks, almost 3 of no relief, I finally had an appointment with my PCP. I told him how long it had been going on, told him the entire story about how the symptoms first came on, that I had came in and seen one of his PA's, had a round of prednisone, after an injection of Solu-Medrol, and antibiotics, yet the pain was not any better, and by then I had a Lupus Migraine. He took blood work, and gave me another Solu-Medrol injection, hoping it was a bad flare and that this would knock it all out. Well, after the weekend, I was no better. In fact, we had decided since I had made mention on several occasions, that it felt as if my pump was not "there", that something really could be wrong with the pump, catheter, medication etc... thus I called my pain specialist and left a fairly panicked message of what was going on. Well, this was on a Thursday, he was doing surgeries and out of the office on Friday, thus Monday I could see him. I could not wait to get into his office, and I was ready to sit in the floor and scream I hurt so badly. He could see that I was in excruciating pain. thus he wanted to change the meds in the pump ASAP to see if something was wrong there, and from there do a couple of tests to see if something new was wrong, which was an EMG because I have basically little to no reflex in my right leg and foot. Plus a CT scan of my lumbar spine to see if something may have happened. So, here we go. In the meantime he gave me a very strong oral pain medication because what was going in surely was not helping what so ever thus I had to be gotten out of pain. HE changed the meds out on that following Friday, yet I felt no relief over the weekend, which I should have if the medication had been the problem as far as we knew. I went through the CT scan, the EMG/NCS that did reveal I have some neuropathy, neuritis, and some degeneration in some of the mylen around some of my nerves, I gather in my legs, from what I can interpret from the tests. The CT did not really show anything other than I have scoliosis which we already knew for a long time. I can remember being very little and the doctor would watch me walk back and forth due to the "crook" in my spine. I guess it was never bad enough to brace, because they never did. I do have to wonder now if it is a little worse. I noticed they mentioned it and the degree of the way it is curved on the CT this time. I do not think any of my other CT's have said that. But, the CT of my lower spine that has been done is proper several years old. I have not had one done for any reason since probably around 2008. I had a couple done even earlier right after we got to TX. I had a really bad bout of very severe lower back pain that sent me to the ER in Corsicana something like 4 weeks in a row. I could not get easy, and they felt I was dealing with kidney stones on each side. They kept trying to keep me comfortable and flush them out with lots of IV fluids. Finally about the 4th trip there the pain started to subside. This was before I even had insurance, so it had to be in 2006 or very early 2007. My insurance came in finally mid 2007, thus I must have had that issue with the stones in 2006 I think. Talk about a nightmare. I feared going here to our ER. At the time, it did not have the best reputation, we did not have near the amount of "good" doctors and specialists like we do now. It was just not at that time a place you went if something was very wrong. Plus they also had a reputation for shipping you off to Dallas rather than help you very much. I knew the other hospital about 20 miles away would try and help me at first. Thus they did. They even I believe done "charity" on the visits, because of me not having my SS at that time, and my insurance had not kicked in, there was no way we had the money to pay for all of those visits and tests. But, they helped me out. So, that was nice, because at that time I was really ill with those stones, and probably unless one was too big to pass or began causing other problems, that would not "blast" them because of the expense back then. When I think back to some of the problems, and especially painful issues I dealt with, all of them extremely painful yet most of the time, I was not able to see a doctor that would treat the pain also, I am surprised I have even made it this far.
I know for me now, and I just read a post in FB from one of the groups I frequent) about do you ever want to throw your hands up and quit? Also, What is "normal?" Those are two stupendous subjects to write about and dwell on for awhile. I shall close this post out and dedicate my next one to those two subjects.