Ending Radio Silence

It has been a very long couple weeks and I have been rather quiet about what has been going on. My parents left for vacation while the crisis hit and I did not want to spoil their vacation, so I kept quiet but for a few select friends. My folks have been regularly on Facebook while they've been gone, so the decision to maintain radio silence, as it were, has been a good one. They return tomorrow and will know what has been occurring by tomorrow afternoon.

You all may know that my health has been messed up for a good two years now. I started with pain in my hands followed very closely by a skyrocketing blood glucose. Not long after that the pain in my hands spread to my wrists and upper arm joints and began in my feet and spread up my legs. Not long after that I began having carpal tunnel syndrome in both wrists.

Over the past two years I have been seen or followed by a rehab doc, a rheumatologist, a neurologist and his NP, an endocrinologist, a neurosurgeon, and an infectious disease doc. I finally changed primary care physicians last February to a gal who is much more on top of things than my previous doc. This was prompted by an abnormal thyroid lab.

I leapt at the possibility that maybe my whole problem was thyroid related (pain, that is). The Mayo Clinic site listed joint pain and stiffness, as well as carpal tunnel syndrome, as possible symptomology of hypothyroidism. However, my new doc concurred that, though I am heavy and sedentary, my diabetes didn't seem to fit the pattern and that both the thryoid and diabetes were part of a bigger autoimmune picture.

Mind you every last one of those docs I listed wanted nothing more than to declare me an overweight American with diabetes and lump the chronic pain at diabetes' door, ignoring a strong family history of autoimmune disorder in the male line in my family and the fact that I had an unusual syndrome (Sweets' syndrome) about 8 years ago, which usually hits women over 50. As that didn't fit me, one of the other categories of Sweets' patient did, namely that it can be a precursor to autoimmune disease.

Everything changed very quickly the weekend of May 21st and 22nd. My pain had seemed to be incrementally worsening in the days leading up to this weekend. By Sunday, I was having severe difficulty walking due to the extreme pain in my feet and legs. My hands were also beginning to curl up again. I nearly went to the Emergency Department that afternoon, but talked myself out of it, preferring to wait until speaking with my docs in the morning.

By Monday morning I was in fairly bad shape. My primary care doctor's office wasn't helpful. I couldn't get past the phalanx of front desk help to ask my doc a question. In the end, this was beneficial (because I was going to try and get a script for steroids out of her). I called the neurology office next hoping to speak to the NP when she came in at 9AM. Two hours later at 11AM I gave up.

I managed to get Skittles and Lola downstairs, but Zoe snuck back upstairs. By this point, doing stairs was exceedingly painful and probably unsafe, so I simply locked her in the bedroom knowing I'd suffer the consequences later. Frankie, of course, continued to have free reign of the place.

I hobbled into the Emergency Department and was offered a wheel chair, but as I was already at the desk, I declined. The receptionist than instructed me to go sit down and wait until the triage nurse came to get me. I took one look at the chairs over there and decided I wasn't sure I would be able to get up out of the chair once seated. I turned to the gal at the desk and said, "I think I'll take that wheelchair now."

Long story short, I had a raging bladder infection and an Emergency Room doctor once again willing to suggest my pain was simply due to the diabetes and would improve as the infection improved. They handed me my prescriptions and sent me on my way, forcing me to "walk" across the entire hospital campus to the pharmacy and then walk back to the emergency parking lot.

I spent the better part of the next few days in bed with a urinal by my side, avoiding transferring out of bed as much as possible because standing/walking was horrible. I had been unaware of my bladder infection, assuming the frequency symptoms were due to a new neurology medication I was frantincally trying to titrate up (I could no longer take the neurology medication that was working as it was non-formularly and the "drug benefit" ::snort:: people finally turned down the doctor's request for authorization). The bladder symtoms were improving but the pain was not.

By Thursday, May 26th I returned to the Emergency Department by ambulance no longer able to do stairs at all and barely able to get out of bed and that with excruciating pain. Further my hands/arms were getting bad and I was beginning to have pain up my back/neck and into my right jaw. The PA in the Emergency Department ran some repeat labs and declared my problem was obviously autoimmune. I had skyrocketing C-reactive protein levels even as my infection was clearing. I received some IV steroids and then was sent home with some pain meds and some prednisone.

By midnight Friday, the prednisone was not controlling the pain. I took my Saturday dose at 4AM and waited until daylight to start making calls. In the end I had to apply my own medical knowledge to make it through the holiday weekend until my follow up appointment on Tuesday of this week. It was requiring 120 mg a day of prednisone (divided into two doses) in order to function.

I have had tremendous support from friends - my long distance friend Kate was on the phone with me multiple times a day to ensure I was hanging in there and coaching me along with regard to finding help etc. My neighbor and friend Heidi, picked up dog food for me, carried all the dog stuff upstairs from the basement, and brought me dinner every night. My friend Barb picked up groceries for me. Georgie and Mary came over to make sure all was well with the cats and the fish. I even managed to find a home for the bunnies in the midst of this (I'll blog more on that later).

My doctor obtained a referral for me to Mayo Clinic in Minnesota for 8/2/11. This occurred in a single day and, believe it or not, they are expediting things to get me in (8 weeks is actually fast apparently). I am relieved and scared and grateful and frustrated and everything else in between. Please keep me in your prayers.

Skittles particularly has been a blessing. It is her nature to be always by my side (except when she is in kill the kitteh mode). She is very affectionate despite her agressive nature. Fran is aware of how much I have appreciated her doggy kisses and her cuddles. More in a bit. Peace.