Thursday, July 30, 2015

Trying to find "balance" between being a "Patient" and a "Caretaker"... a writer, a blogger, an Author, an activist, an Ambassador... and battling Lupus, RA, Sjogren's, Lumbar spine problems and chronic pain

I WILL BE SO GLAD WHEN THIS WEEK IS OVER!!!!!!!!!! I has been something everyday this week and today once again. AT noon Mom has an MRI on her lumbar spine. She HATES MRI's because of like many of us the noise and being so confined & be still... so I hope she makes it through okay. They did tell me that there is a doctor there at all times, & if a patient is extremely anxious, he can administer a really light sedative just to make them feel a bit more calm... where was that the last MRI I had??? I am not "fussing" about helping Mom out at all. That is not the meaning of this post. I know for her it is very difficult to go through all of this. In fact she missed PT yesterday.  Even though she has the schedule hanging right up on her calendar, she got confused I guess, so I went at 1:45 to pick her up, and she was not ready..... and when I said something about PT, she said today?? I said yes  - Mon. Wed and Fri.... all of this along with the medication I think the pain doctor gave her to take at bedtime so she can sleep, (she had not been sleeping due to the pain for weeks) it may have her a bit confused. She so rarely takes anything but basically blood pressure meds, potassium, Lasix, and Crestor... so having other meds in her system, I think has her kind of fuzzy.... hell I am FUZZY MINDED ALL THE TIME (LOL)!!!! Anyway she does know I am picking her up at noon today for the MRI... and then tomorrow she goes for the PT again. What I am seeing and thinking, if she goes a couple more times to PT, just about all they are doing for her, and some of it she is doing at home a couple of times a day anyway, she could probably go twice a week, and be fine. She can do the rest of it at home... and I do know she has been doing the exercises they showed her... I think that in itself, just not having to run out 3 times a week in this horrible heat, may help some. It is honestly so danged hot here, and we have a butt load of humidity to make things worse... I can't even stand in my kitchen giving the dogs their medications without sweating... insane. I have been turning the A/C off early when I first get up, then back on about 11 am or so, but I went and turned it on the "humidity" setting for now to dry out this "sticky, damp" feeling.... anyway, things here are nuts... I take my last round of antibiotics today for the cellulitis.... but the lump is not gone... so I am not sure if that is okay and the medications will continue on to work to get rid of it, or if it will just be a lump there for awhile, OR if I need more antibiotics.... I HOPE NOT the 3rd! They have really put me into one helluva tail spin with my stomach. Plus make me feel so tired and fatigued... on top of what my usual is, and I am just drained about all of it, but I don't want to wind up in the hospital either.. Mom will go in for the injections once the MRI is done and our pain doctor has the results. I figure sometimes next week, which will mean a VERY EARLY trip to Dallas, and way up Central Expressway to a surgery center on Greenville Avenue... so I don't look forward to that one either. I've just made this trip myself for my injections, and then the discogram a few weeks back... so once again, off to Dallas...

I am still quite puzzled as to why after all of the MRI's, CT's, X-rays, and tests on my lower back all these years, that not one test ever showed me missing the "lamina" that I was born without.... I've always said I don't think some of these scans and so forth are nearly as accurate at times... I can't think of one of them that was very accurate on me.... every time I've had a surgery, once the surgeon is actually looking inside, there has been a great deal more damage than what any "scan" ever would show.... even with my neck surgery, shoulder... knees... any of them... in fact I believe it was my cervical spine, the severe damage was in a "hidden" spot that the CT could not pick up from my understanding... so that makes me wonder how many of us suffer and doctors do these tests, and they don't look so bad, so they think we are just "making it up"... or it is not bad enough to warrant surgery and so forth. I have certainly fought with one doctor for 2 YEARS before they finally fixed my left elbow. I had about 19 steroid injections in it, before I found a doctor that did surgery right away, and sure enough the tests didn't show all of the damage....

I've also now am having issues with my right hand and fingers worse, but both hands and fingers. I've got swelling that is usually not where it is now, and I can barely stand to type for very long, and they hurt almost all the time. Always something... so to all have a good day.... I've got to do a few more things and then get ready to take Mom for the MRI.... more to come

"I feel as if I should have a full-time TV "Reality Show".... called "Chronic Illness/Pain patient - Caregiver This is MY LIFE! REALLY!

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