Veracity of personal testimony does not match documentation. So I guess this means I’m screwed for another two years. do I need to scream in pain each and every time I go to the Dr/i.e. his nurse? Do they want me to crawl through the dirt before they see my problems? Yeah, I clean the house. sort of. Yeah, I bowl. I hurl the ball down the lane at an old alley that doesn’t mind terrible bowlers banging the ball on the lane. Ja, I tried to exercise with Tai Chi. They said exercise s I went to senior Tai Chi and it was excruciating every time twice a week. Yeah, I mow the lawn, it takes a day to recover from it. Yeah I bowl, it takes a day to recover from that too. Ya I only have a few friends and apparently the judge feels that they all lied in their testimonial letters. I’m so freaking upset 60 days to appeal. OH Goody the same freaking ass forms all over again. I’m so tired of every one telling me how brave and inspirational I am; the judge seems to think I was lying. Don’t call me an F’ing liar you governmental ho.

Yesterday, Thursday the 17th 2010 was my hearing date. I was so nervous my mind blanked out. However, that wasn’t even the fun part. I had a cane to use and a cast on my right foot. On Saturday, May 29 2010 I was in a car accident. (And legally, that’s all that I can say about that.) I had to have my foot up on a chair.

The proceedings were OK…The judge reminded me of a wonderful lady I knew back on the west coast. So, it was like talking to a friend. The Occupational Therapist scared me a little, all those governmental codes and the hypothetical job discussions…I was just a bit scared. I was so embarrassed, the fibro nap attack tried to kick in during the hearing. Plus I was standing up, sitting down, putting my foot up, standing and stretching, and had my usual speaking issues.  So now the wait begins again.

I’m praying for a positive result; if it takes a long time for the nice Judge lady to make a positive decision – I’m OK. I just am so anxious about the decision counting for me not against me.

The whole SSDI application process started back in April 2008. Two full years – that is pretty much what the lawyer said would happen. My lawyer was an associate at a large firm. Nice, encouraging, and pleasant to be around. That is always a good way to go…a pleasant lawyer. However, is it an oxymoron?

Thank you for your encouragement and comments. It has been quite an interesting year.

Sooo, beginning in April, 2010, I’ve been told by actual lawyers, not paralegals or assistants the following:
“The hearing could be any time now. From one month to six months away.” The lawyer, B., is actually quite nice. He encouraged me to turn to my faith community for support. It is sad that I have had to turn from my home church and try to find a new church. The church community was great, the Pastor…not so much.

I’m so tired of it all. It is like waiting for my “ship” to come in.

This year I have lost one friend…I don’t know where she is, what she is doing, or why she stopped talking to an entire group of her friends. I miss her. I have made some new friends, however, not all have turned out to be true blue. It makes me tense up and want to hide in a hole. Just listen to audiobooks, garden a little, bowl a little, and stay away from people – this is my new temptation – avoid the problems. Naw, I don’t like it either. But it is as tempting to me as a chocolate cake with rum ganache made of gluten filled wheat.
I’m tired of speaking to the nurse practitioner whom only recommends more new brand drugs that sound like the old drugs only more expensive and just as horrible due to side effects.
My husband had to take a job that takes him away from home most of the time. Egads! With him home I had a hard time keeping house. Being responsible for the whole shooting works is driving me bananas. I’m going to have to revert to Franklin Covey (eek business tools) to manage my housework, yardwork, and bill paying routine.

I started Tai Chi exercise last Nov. It is very painful. “they” say that exercise helps fibromyalgia patients in the long term. In the short term my patience with the increased pain, and decreased mobility are driving me bananas.

Good news: My eye troubles that started in ’07, which I have since linked to my meds, are actually being addressed by competent Opthalmologists. I have a temporary lense sticker in one of my eye glass lenses. They re-evaluate my eyes again soon. (gremlins singing “whoops there goes another pile of cash) But at least there seems to be treatment and hope for me to return to reading a lot, at length, and in regular fonts. I just attributed it to the mystery of fibromyalgia.

I’m curious, am I the only person that thinks the Lyrica commercials sound like fibros have a bad case of “nerves”? I have heard from one friend that the side effects are not good. Have you tried adding gentle exercises and how did it effect you long term?
Have you tried Lyrica?
Have you tried Flax seed oil (nasty stuff recommended to me for the inflammation in my eyelids. Taken internally with a soda or juice chaser) I don’t notice it helping the fibro, the eyes? maybe I cannot tell. I didn’t even know I had under eyelid rosacea….i.e. ocular rosacea.

OK brain dump over.

Fibromyalgia presents a lot of difficulties for me – I have mentioned a few in other postings. However, this morning I have small victories to report.

They are:

• Clipping the cats front paws. (I have two cats)
• Giving the sick kitty her pill and her liquid medicine

So, both cats are a little annoyed. I, however, did not get scratched. Do you know how strong a so-called petite framed cat happens to be? Oh gosh. My other cat is a hefty guy. He has a lot of muscle under that heavy coat.My husband usually clips the claws and gives the kitty meds. For him, they behave. I have to wrap them up like new born babies.

So today I celebrate a small Fibro victory. The cats however do not understand why I am so cheeful. LOL

Fibrowriter

Fibromyalgia and housework are not compatible combinations. This is true for me, and perhaps for others in the Fibromyalgia “community” Recently, I read a ProHealth Newsletter “Readers Comment” that struck me up the back of the head – like a “Gibb’s slap” or a Homer Simpson “Doh!” moment.

Lil’ Housework Tricks
Over the years I’ve picked up lil’ tricks like these that really help.

• Give everyone their own cup, just rinse it out and use it again next time. At the end of the day you don’t have lots of glasses and mugs.
• I have cloths lining the shelves in the fridge, that way it rarely needs cleaning, just change the cloth. I use white facecloths.
• I have mats that I put on the top of the fridge, entertainment centre, dressers and any other surfaces to save dusting.
• Before I get out of bed in the morning I pull all the blankets up so that it’s already made when I am up.
• Before I get out of the bath I wash the tub. I keep a terry towel robe right there for times that I am too tired to dry myself. I use lots of bubble bath so just soak clean.
• I have an extra tension shower rod installed just behind my other shower curtain rod. It holds all the towels or anything that needs drying, hidden behind the closed shower curtain.
• Perhaps a laundry basket stored in the tub would work for the kids’ dirty clothes? My aunt had a TINY bathroom; she had to use the bathtub for storage, and it always looked tidy and neat. – G

I must admit that G’s ideas are excellent. I am only a beginner at sewing, but I think I can manage cloths to cover the entertainment center (instead of crocheted doilies – I’m old fashioned LOL). I also knew there was a reason I wanted a terry cloth robe. Now I will get one – eventually.

Hearing Date
As of May 20, I do not have a hearing date for my SSD appeal. The letter sent March 2007 did specify that I should watch for a letter with a hearing date. Unfortunately, I do not have a date yet. My lawyer’s office was very vague about how long it takes to receive that date. So, I am gimping along, hoping for the best, and trying to get out of the house more than once a week.
FibroWriter

I recently received a letter thanking my lawyer for the request for a hearing pertaining to my SSD appeal. It noted that at some future date, I will receive a letter specifying that the hearing will be 20 days from the date the letter was sent.
Could they be a little more vague? Whatever happened to the Plain Language initiative “everyone” was so hyped up about for all governmental writing and communication?
So, sometime in the near (?) future I’ll be having a hearing.

Now, I wonder if the darling ladies at my lawyer’s office are going to contact me at all? ARGH!

Oh Joy! I have more identical paperwork to fill out. This time it is for a hearing before a judge. A representative from my law firm stated that it may take “18 – 24 months for the hearing”. She sounded like an ad for their services. The system will assign a date with the judge, and the lawyer will be with me. I’m hoping that the lawyer’s office and I will be having a leeeetle bit more interaction before the hearing. I asked the office employee if I needed to fill out the forms differently…apparently not. I was hoping for more help from these folks.
So, paperwork, paperwork, my arthritic hand is so looking forward to filling it all out ASAP. I have lost count; this may be the fourth or fifth time filling in the same forms.
oh geewillickers.

So, during my first appeal, SSD once again sent three sets of paperwork asking the same questions as before. I started writing at 5:00 a.m.. After a couple of included naps and lunch, Ijust finished at 2:30 p.m.

I ponder why they give a person whom is ill ten days to complete “a gazillion” questions that must be filled in by hand. Ponder, Ponder, Ponder. Ow I hurt my head. That is ten days from the date on the top of the form. I received the packet four days after they printed the packet. I’ll probably have to mail it on Monday. Will it get there in time or with they reject it with a date specifying I mailed it seven days after the date on the form. AAAAAAAAWWWWW.

Now for some whine with that paperwork cheese. My back, butt, muscles above the butt (fibroforgot the term) and hips are killing me after all that sitting.

On the positive side. This time I filled in the forms. Last time the M.D. filled it in.

Friends ask, from time-to-time, about my SSD case. What comes to mind? That classic sound of Majel Roddenberry as the voice of the Enterprise’s Computer stating: “Waiting…” The wait to hear something, anything from the state about my case is frustrating.

My frustration came out at the Rheumatologist’s office. My appointments are with the office Nurse Practitioner. She is a nice, caring person. However, that day I quietly lost it. Well, perhaps not so quietly. I asked whether I need to enter the office crying each appointment before someone will realize that I’m in pain all the time.  The office notes that state I’m a “pleasant 42 year old woman in no apparent pain” drive me crazy. I’ve been in constant, chronic pain since February 2001. I’m not at the point where I can constantly mess up my sinuses by crying all the time. (If I did that my dear hubby would tell me to take a reality check.) I also stated that being unpleasant “acting like a bitch all the time” just isn’t my style. My Nurse listened patiently, asked me if I wanted to try a new drug or have a shot in the hip.

The shot in the hip: never lasts for long, and it is a shot in the bursa. That is the “item” that is inflamed during bursitis. The new drug is one that I have researched and during this moment my Fibro-fog has blanked out the name. The drug is approved for Fibromyalgia. However, the side effects remind me too much of a drug that had an addictive effect on me – and caused other problems. I imagine Nurse’s notes may read “refused new treatment options”. But I don’t care. I know what works for my body and what is not good for my body.

We have to be vocal about our conditions. A lot of Fibro patients have more than one condition. It may be confusing to know what condition is causing what effect. However, the belief that speaking up about my symptoms is important. Even documenting my fight, plight, illness, and pain in this blog gets the word out. What is that word? it is OUCH.

I received notification from SSD that they denied my claim for disability. In a process that may take, I’m told, up to two years I begin to wonder the following:

If life has to be summed up in sports analogy I think this notice could be taken as either a strike or a ball. Because the “game” is going to last many, many innings I believe this refusal may be “ball one”.

On the other hand, if life is summed up as an analogy for an orchestra, then this is at least one measure of “rest”. I just pray that I do not lose the beat.

I prefer to set aside analogies and look at life as something God has given me. The Lord will provide and see me through the times of trial. And with SSD it will literally come down to a trial in the end. Today I call my lawyer and hope that they are as optimistic as I feel at this moment.

It does not matter how we look at life; analogies, reality, and Faith guide us all in one way or another.