[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

[Lara]

Hello Sharon,

Welcome to the NeuroTalk Support Groups.

You've certainly had a terrible start to the year and I'm very sorry to read that but it sounds as if your positive mindset will help you in the future.

There are older posts on the forums for both Polymyalgia and Giant Cell Arteritis. You may have found them already but if not, you can use the
Forum Search Feature

There is also a Chronic Pain Forum

I'm sure other members here will have more information for you, but I just wanted to say hello and that it's great to have you here.

take care.

[Kitt]

Welcome SharonS.

[Darlene]

Sharon,

Hello and welcome, happy to see you have come to be with us, it a great place to be. As you can see we have a great number and caring fellow members here, where you have find a supportive and relaxing place. Have fun looking into the different forums. Our shoulders are here for support in many ways.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

[SharonS]

Thanks to all who have responded as I do appreciate the feedback. I've signed up to attend "Fearless Caregiver" seminar this Friday as it should help me prepare to do a presentation to our local ASQ (American Society of Quality) section on this experience and using the data collected to show results. Somehow, it seems more appropriate to manufacturing but quality and it's analysis is a part of healthcare too. In fact, I've been invited to speak at the regional meeting in November too.

And, I have to thank the company I work for as Delta Star Inc. Leadership has graciously allowed me to work from home from now until my retirement in February 2016! This enables me to recover more fully and begin the immersion into some of the retirement activities.

Today was a good day and I spent a part of it in my garden with the hens 'free-ranging' around me as I worked up a sweat that was from effort and not from one of those 'cranium fevers' that had me wrapping my head and neck in ice as I prayed to God to spare my brain! I've actually slept more than 3-4 hours in the last few nights and feel like a sort of normal me is coming back.

It is good to have an outlet to express these feelings and the joy of being alive when you've gone through several weeks of agony and pain and fear that you weren't coming back. I have a greater awareness of many things and faith is one of those.