[SharonS]

Hello to all! As an early 60's female, I've had a rough start to 2015 as I had gone to Emergency Care on 1/10/15. Here is a brief of the next weeks:
· January 10th-awoke with high pain and temporal headache extending into left eye while tongue, mouth, and jaws numb and difficulty swallowing, realized that vision was blurry and hearing also had declined—went to doctor where stroke assessment done but ok and vision test where I could only read the top line of letters-- had put me on dose of steroids (this was to prevent blindness as a complicating factor of polymyalgia called ‘giant cell arteritis’ where these large cells can and do migrate through the blood stream and can result in immediate blindness as the giant cells block the blood flow in the smaller arteries (optic)
· CT scan of head revealed no tumor, aneurism, or stroke but a few minor ischemic changes-doctor had also ordered follow-up with Neurologist and MRI showed no evidence of issues either—to include a part of optic arteries especially
· January 12th-Family Doctor visit where he reviewed issues and put me on prednisone at 40mg dosage while we discussed possible temporal artery biopsy but agreed that with immediate danger and no need to wait for biopsy best to be on the steroids as that does prevent the blindness—response to the steroids is indicator that giant cells were present (also—biopsy as done often detects only at 50% rate of accuracy)
· Out of work, in severe to debilitating pain and vision continued blurry as well as poorer hearing but no worse on vision so med’s continue
· Response to meds slower than clinical normal but I do continue some improving and routine doctor visits with monitoring of symptoms while awaiting the rheumatologist specialist on this type of auto-immune disease—can’t get that until in June!
· Family doctor follow-up recent with slight reduction in prednisone as response to meds indicate process is working as vision remains blurry but has gotten no worse—we monitor symptoms as we lower the dose over the coming weeks/months (possibly years)

Meantime, I’ve monitored my conditions to include daily notations on medicines taken at times taken, blood pressures, pain levels as value 1-10 for various body parts – part of the polymyalgia literally translates to ‘moving pain’ and it does! It almost seems like gravity has impact on what hurts as I’ve gone for 8 weeks with about 3 hours of sleep per 24-hour cycle—insomnia being part of the disease and part of the cure.

The upside is that I am gradually beginning to feel better and thanks to the urge to ‘pace’ to keep blood flowing, I have cleaned and organized every closet, drawer and such in the house and some twice. I’ve certainly shed my share of tears in pain and frustrations and have prayed to God to spare my brain as I’ve iced the head/neck area to handle the ‘cranium fevers’. At the same time, the body parts are numb and cold and I have to warm them up and get blood flow back again (feet tend to ‘curl’ downward such that I could ‘perch’ on a branch).

My notes and data as charted and tracked for trends show the varying progress over the weeks since this began and by being ‘clinical’ about it, I’ve learned a great deal. I think it would make a great quality story of how data is and can be used and interpreted. I believe I have sufficient strength to be able to present it in a setting whereby other quality associates would learn from it as I shared this story.
So--this is where I am with the hopes of starting a local support and education group for this disease as it must be a task for those in their 70-80s and their caregivers. I hope to learn more through this forum and other resources.
Thank you, Sharon