June 26, 2015
I have waited many months to be in ‘walking recovery mode’ and now that it’s here, I am very excited. I would be a lot more ecstatic had I not had more bowling balls being lobbed my way over the past month. I have had an onslaught of severe pain relating to rheumatoid arthritis during my Achilles surgery and recovery, and that was placed on the back burner. I recently went back to see my rheumatologist due to the spreading of the pain throughout nearly every limb and joint. She had me undergo every test imaginable over the last two weeks, before she puts me on “high risk drugs”. News flash doctor: I’ve researched the two drugs that are on my horizon and there’s no way in HELL I am taking either one. It’s as if my road to health already has some sort of death wish, and by giving the OK to start swallowing these pills willingly, is like contacting the mortuary and setting up a window period of when I need those pearly gates opened. Thanks, but NO thanks. We’ll have to come up with a different plan.
During my last visit with my rheumy, she was looking over the lab work results she had ordered for me. RA factor was high and there were a few other abnormalities. Then she shares with Dennis and I that she is very concerned because one of the tests she ordered (urinalysis) had a very high number in the occult blood reading. I explained to her that I am one of these lucky people in life who have had for decades, blood in the urine (microscopically) and that it’s always been shown as a trace. She told me it’s “more than a trace now” and asked if I had a urologist (that would be a big fat YES) and told me I needed to see him SOON. Dear Lord, NOW what? I already have a fairly large cyst (I like that word better than mass) smack dab in the middle of my kidney and I see my urologist regularly for CT scans and ultra sounds. But back to that in a moment.
My rheumatologist had me have an MRI of my Sacroilliac Joint (pelvic area/ low back) because this may show something related to having RA. Ok? I had that performed earlier this week and while I was there at the radiology office (my home away from home of late) I asked to pick up the MRI report and scan I had done there last Fall, of my brain. They gladly obliged my request. My plan is to take this report to my rheumatologist and then possibly see her husband who is a neurologist. I saw a ‘new’ neurologist twice last autumn and WILL NOT GO BACK to that jack ass. When I saw said jack ass, I told him I had migrane headaches and they had gotten so bad over the past 2 years, that they affect my left eye. No ibuprofen, Aleve, anything works to relieve pain. Just bed rest for 2, 3 4 days or more. It subsides only to come back a month or so later. The migranes are always on the left side of my head, and behind my eye. (I saw an opthamologist and she checked it out and said behind my eye looked good. Whew!) We went in for the results with the jack ass neurologist last November and was told everything was fine.
On the way out of the facility with the MRI report in my hands, I start reading through it. The first few lines seemed very positive, (for once in my life) then it quickly turned not so rosey: Long story short, I read that there is a “subcentimeter lesion in the left frontal deep white matter which is nonspecific, possibly a sequel of migranes, demyelinating disease, or other inflammatory etiologies.” WTH!! First off, I don’t embrace the word LESION! Never have and never will for crying out loud. And second, not too thrilled about one being deep into my white matter on the left side of the brain, thank you very much. I can see in the report where it states that it (lesion) could be related to the damn migranes, and the demyelinating disease could be related to MS, and last but not least, I already know my body is raging with inflammation so maybe it’s related to the rheumatoid disease. My ire lies with the jack ass neuro who didn’t mention a WORD to us about this nearly 7 months later. I’m no physician but let me tell you that I certainly think there is a correlation between the cluster headaches and this thing in my brain. So in addition to having to have the fortitude and spunk to begin physical therapy (to teach me how to walk once again and rebuild up muscle in my leg and dealing with all that is connected to my foot/ankle/calf issues), I still have the RA diagnosis to maneuver through; a lesion imbedded deep in my frontal deep white matter; and now my kidney?
I saw my urologist this morning and told him WHY I was there, that the rheumy was concerned. He said “She shouldn’t be checking your urine, that’s your urologist’s job.” Hmm. Then he asked me if I smoked, I told him NO, and I added that I really don’t drink but that I should. He then say’s “I would if I were you.” WTH again! I hope he was just being funny? After he tells me that he thinks everything is fine and not to worry, I now have to go have MORE blood work, a CT scan of my pelvis with tons of water in my kidneys, then, – and this one I don’t want to do again- is have another cystoscopy. UGH! (Your urologist will place a cystoscope, a thin, wire-like instrument that contains a lighted scope or camera, through your urethra into your bladder. In some cases, a video camera is attached to the cystoscope. Once the cystoscope is in your bladder, saline solution, along with medication to prevent infection, is injected.) Just what I want to do…have a wire with a camera jammed up into a section of the hoo-ha once it’s been anesthetized. Did it a couple years ago (so degrading) and now again. I am leaning on faith and hope once more, that he’s just covering all bases. I mean, he said everything was fine, right?
In addition to my prayers, I can’t help at times asking:”God, I can’t handle this anymore. I don’t know what to do, but I can’t do this much longer.” And then I hope something like a giant eraser will swoop in and wipe away all the pain, anxiety and stress. I know people are well meaning but I tell you, if I hear “God won’t give you more than you can handle,” I may smack them, but that’s highly unlikely because A) I don’t hit anyone and B) It hurts too much to make a fist, let alone raise my elbow up.
SO I guess I have to try and live by these metaphors: Life is a three-ring circus (Spot on), Life is a minefield (Mine is, anyway), Life is a roller coaster (Written for me), Life is a puzzle (I just need a few pieces that will solve my immune system problems), and this one is just plainly meant for me: Life is a game of cards (you have to play the hand you are dealt).