Wednesday, March 12, 2014
A man in one of my Fibromyalgia groups posted about how he is trying to deal with a lot of guilt because his pain doesn't allow him to do what he used to do.
I really feel for him and others like him, because I can imagine that all too easily. I am very lucky in that I have a loving and supportive family, who gently push me to continue trying to do what I can, but at the same time are understanding that I need lots of breaks, naps, etc.
But sometimes, even I feel a bit of guilt...and anger that my body has betrayed me.
Thursday, March 6, 2014
I arrived nearly two weeks ago now. I will be here until mid-May.
Here is at my daughter Eva's home in Nashville. My partner Bill surprised me a month ago with tickets to visit her for three months!
It has taken a bit of adjustment, but I'm slowly getting there. My grandma skills are a bit rusty, but I am thoroughly enjoying the experience of learning how to be one again.
I am helping Eva with some projects around the house, and hope to be a blessing and true help to her over the next several weeks we have left.
I am finding that with a busy and active house, it is a positive stimulation for me. It's good for me to get out of my comfort zone. There are times I have to retreat to my bedroom because my health issues demand it (quiet times with eyes closed, and just to catch up on things I have to do to maintain myself. That includes naps, which I admit I am not getting as many of here. So far so good, but as Bill reminds me, I have to pay attention to my body and not overdo things...)
I look forward to many days of getting to know everyone better, and just enjoying BEING with those I love!
Tuesday, February 11, 2014
My Dad passed away in 2001, after weeks of being in a coma. He went into that coma from blocked arteries caused by advanced heart disease that he wasn't aware of until it was already too late.
With that family history - and my own experience with arrhythmia, skipped beats, and racing heart - I felt it was prudent to have a stress test at this stage of my life in case I could head off worse things down the road.
Today was that test. It was a lot more strenuous than I had expected, but I got through it. I had two tests, actually - a treadmill test, and a nuclear heart scan.
The results of the treadmill test were immediate, and it was good news for that one. I will have to wait for the doctor to mail the results of the heart scan. I sure hope that one has good news, too...
|The image on the right is the result of a nuclear blood scan...|
Friday, January 31, 2014
As eloquent as I can still seem in my writing - sometimes even in my speech - I personally know I am becoming more and more scatter-brained. What once was easy for me to formulate in a micro-second in my mind, then tumble from my lips, now takes *thought*, then measured speech.
That is partially a good thing, because I appear less impetuous. But have no doubt, I am still the old me, talking before I think...except now I am thinking before I talk. Most of the time...lol
Thursday, January 16, 2014
It started out with frustration, near-panic, and high anxiety, but as the day wore on, our perspective dramatically changed...
There is a blizzard outside our humble home here today, at Prairie Home farm. Earlier today, we were supposed to drive 50 miles to participate in a video hearing before an Administrative Law Judge concerning my pending Social Security disability application. The storm made that impossible.
After many calls between myself, my attorney, and the office handling my case, the ALJ asked if we were willing to have a telephonic hearing versus the original video hearing. We agreed to the offer of a telephonic hearing, wanting no further delay in processing my claim.
The result was a brief hearing, which ended with the Judge issuing a favorable bench decision. It felt surreal to finally have what I had long sought. To be honest, it still hasn't sunk in. What this will eventually mean is security, income we so badly need now that I cannot work. We are hoping that there is enough back pay that we can do badly needed repairs to our home.
For now, we wait. As I know so well, having worked for the Office of Disability Adjudication & Review myself, the wheels of government do not grind fast. My attorney warned my case could be one chosen for review by the Appeals Council, but it might not. If it is, and if it is remanded to the Judge, things will be delayed. But he tells me he's very confident we would prevail if that happens.
A bit later in the morning, I realized that we hadn't opened our "Blessings Jar" at the end of 2013. Talk about an appropriate time to do it today! So I brought it from the kitchen, dumped the contents into Bill's (upturned) Stetson cowboy hat, and we alternately chose slips of paper and read them aloud to one another.
It was an uplifting experience to say the least, the blessings of this past year: Bill surviving a vehicle accident that could have been much more serious; friends, family, and complete strangers donating cash, wood pellets, food, and catfood/litter when our already-inadequate budget couldn't be stretched any more even for the basics of life. These are just some of the blessings in the jar.
A cousin suggested we had our first blessing to put in the jar for 2014 - today's victory for my disability claim. I smiled as I read that. Great idea...and in the first slip of paper went, awaiting a reminder to us later this year...
Friday, January 10, 2014
Today I met with my attorney to prepare for my Social Security disability hearing next week.
It wasn't easy to travel there; sitting in a vehicle any length of time is very uncomfortable for me, but I found ways to cope by shifting positions and distracting myself mentally. Concentration on a task during times like this is impossible.
The meeting went well. I am thankful for my attorney, who is very good at what he does. He feels we have a very good chance for a favorable decision, but he also warned me that in the last year or so, Social Security has begun stressing to its ALJs that they want them to avoid allowances whenever possible by the regulations they must go by. In other words, past ALJ interpretations that were generous, are discouraged.
Times are tough, even for Uncle Sam. Meanwhile, the Rich get richer, and the Poor get poorer. "There is nothing new under the Sun." - King Solomon
Friday, December 20, 2013
|Fibromyalgia: Nervous system Chaos|
Fibromyalgia has puzzled both patients and doctors down the years with its constellation of symptoms.
That is changing.
"...[In] 2013 there's been this absolute explosion of papers," says neurologist Anne Louise Oaklander at Massachusetts General Hospital in Boston. "The whole view on this has shifted."
It appears there may be more than one trigger for this disease. We have literally been stabbing in the dark and getting lucky sometimes as regards treatments and medications, but it's been more miss than hit.
It's still very early days, but I continue to hope for better treatments than what there are currently (which do not address the pain, mental fog, extreme fatigue, etc. nearly enough), will be found...