It's been awhile...

...since last I posted. My hearing didn't give me a good feeling. The judge wanted to see my Facebook profile, and I freaked. Most people would say that it pretty much proves how I've been feeling, I sometimes whine...Most of the pics in the last years are of me, by myself, my cat, my Mom's dog, my brother, or scenery at local parks. But there are older pics, the date that shows on them is the date they were uploaded, even if they are 10 years old, and maybe sometimes I tried to make my life seem at least a little interesting and not pathetic, so I may have purposefully lied by ommission or slanted my statuses in a more positive direction. Knowing what I know from past experience with the SSA, I figured they'd take everything they could and twist it to make my case look bad. It's really weird, they call them Judges, but really the SSA Appeal Court Judges are more like attorneys for the government. I expected the SSA to look at my medical files, but I never expected them dissect my life the way they've tried to do!

Suffice it to say, I didn't give them access to Facebook. It just made me so ANGRY, the very idea made me feel violated, really. I've already had to resign myself to the idea that everyone who knows me judges me for not working, but after all, they're opinion of my medical limitations doesn't hinge on my getting thousands of dollars to pay off my hundreds of medical bills and potentially getting well, or at least, better.

So anyhow, I guess I knew they weren't going to approve me, again. Yes, I think I did. I think that's what I've been preparing myself for all summer, mentally. The couple of weeks after the hearing were the worst, and I wouldn't have made it without the support of my Mom. Yes, we still fight, and she still shoots her mouth off and says really hurtful things occasionally (which incidentally, the SSA used against me, apparently something I said to my shrink, they built a whole thing around it jumping to the conclusion that she didn't support my application, amazing!) but the only reason I've made it through this year so well is because she let me stay with her a good part of the year, not continuously, I would desperately need to come home and veg completely for a a couple of weeks a month at least usually, but it just made such a huge difference to have company, someone to hug or get hugged by when my heart was racing incessantly for no known reason, or I was sad, or exhausted to the point of tears, or feeling like I got hit by a truck. Despite our ups and downs, it was so much better than sitting at home, feeling invisible, to tired to make friends, trying not to let it hurt that my father was making a new life and apparently not planning to include me in it at all...I mean, yes it's awkward when your parents are married for almost 40 years and then they're suddenly with someone else, but that's what introduction dinners and such things are for. I guess really, it shouldn't have been a shock, seeing as how during their last separation he lived with a lady and her two daughters, who we never even met, but it was still a shock and hurtful to find out other members of our immediate family got to meet her before we did. And, in a way, a relief when he called me from the airport to let me know he was leaving the country! Yes, this is really my life!
Having the place to myself has been a godsend, so if not for the fact that he didn't make any arrangements for the bills or anything before leaving, and isn't paying the mortgage or HOA fees, it's been lovely, to feel like a grownup again. I used to get sad because it hardly felt like a home here. He made so many promises to me about how I could decorate the place that never materialized (we finally got blinds on the huge living room windows 2 months before he left, in time for his family to come visit) and then I had to beg and plead for help keeping the place in sanitary conditions. But it's like with all that anger and bad energy gone, I started to be able to see all the little things that were within my reach to make it truly a home. I just wish I could afford (physically and financially) to paint it, but the little things I've done have probably been the cause of my increased POTS symptoms. What could I do, it wasn't ALL vanity. It was a psychological crutch, a way to feel in control, making the place mine while I'm here.

So. I got the decision. UNFAVORABLE it read. (Here's another hilarity: apparently I could do work in a WAREHOUSE! LMFAO! How hilarious is that? Nevermind the fact that I've had problems with my hands & wrists since my teens ::cramping up as I type, matter of fact!:: but the Dysautonomia seems to have made me extremely sensitive to temperature changes, so, nice, icy cold or super hot warehouse? Uh uh. Oh, and my being able to take care of a pet cat is suspect, as well as the fact that I admitted going to a TUPPERWARE party for a couple of hours!They also dismissed my pinched nerve/messed up vertebraes cuz they somehow missed that my Orthopaedic Surgeon who had me do months of PT was an Orthopaedic Surgeon, and since I didn't see one it must not have been that severe. I guess the Neurologist and his Nerve Conduction study didn't figure in either.)
Ah, forgive the rant. At this point it just makes me laugh. I wonder how many other people can claim to have been denied Disability on the basis of their (recently deceased) pet cat?

Why is it...

That I'm still surprised that folding laundry totally wears me out? My feet hurt, my legs are sore, my back is sore, I'm sweaty and out of breath (thought that might be my allergies, since the cat is in here). I'm exhausted, and it seems so crazy.

I asked myself the same thing a couple of weeks ago after a trip to pick up some groceries. How is it that something so basic wears me out? And then, how is it that I'm still surprised!?

I don't know...Maybe I just thought since I got a lot sicker for awhile, and even being on my feet was exhausting, that when I got better it would be better. But that doesn't really make sense does it? Because it was challenging before, too.

Sometimes I wonder if in that jumble of cognitive dysfunction there's some kind of disruption in the learning process. (I say this because I seem to also have a much harder time getting anything out of talk therapy anymore...it's like i forget what I learn, so I can't apply it, whereas before it would all click and I could use it, apply it, for years.)

I've had FM/CFS for 7 years now; albeit I've had my ups and downs, but I can't seem to accept so many of my limitations, and I really think it's caused problems with adjusting to my new life... I've gotten better about some things. I use my handicapped placard. I even use GoCarts at the stores if I'm not feeling great. I've learned to ask for accommodations when I need them. (I went to a concert recently and was amazed when I investigated accommodations just how easy it was to get them and what was available, and felt so blessed that they made it easier for me to go and enjoy myself doing something I used to do in my pre-illness days.)

But I still feel guilty asking for help with a lot of things, I still have frequent barely subconscious wars about whether I am letting myself get lazy, or I should try harder. I grew up being a tomboy. I liked to play with the boys, did sports, like running, hiking, mountain biking...I always believed I could do anything a man could do. And now I feel like such a wimp! I can barely carry my own groceries, nevermind the laundry!

Anyone else experience these issues? How do you cope?

Sometimes a Chick with FM just has to get thrifty!

Feeling bad lately because I'm running up the electric bill. I was so happy that summer was over, because I feel really rotten in the mornings if I wake up and it's too hot. It's like I'm swollen or something, groggy, uncomfortable, and in slow-motion, takes a long time to wake up. So the brief Fall weather was perfect, I started practically hopping out of bed! It felt so good!

(I recently read an article about MS and heat intolerance that describes a lot of what I've been experiencing. Finding an interesting number of similarities between FM/CFS, & MS, except the life threatening part.)

Unfortunately, Fall was much too brief, and now with the fast approach of winter, even here in California, I'm finding that mornings are getting rough again. I feel myself get all stiff and achey just about as soon as I leave my bedroom, and am finding it a lot harder to get going. Turning the heat on helps tremendously...but I'm not the one paying for it.

So anyhow, I already knew about the Universal Lifeline Service for phone service. I pay about $7 a month (albeit w/o long distance).

I decided to look up something to help with Electricity, and found two programs:

This one is called CARE and is an income based discount, which I should be able to get:

http://www.sce.com/residential/income-qualified/CAREFERA/

This one helps people w/special conditions, mainly who need special life support devices or have specific medical conditions or are immunocompromised. I think I might be able to manage that last one. Worth a try. Also worth noting, since many w/FM have Sleep Apnea, that would qualify you too.

http://www.sce.com/residential/rates/medical-baseline-allocation.htm

Eligibility:

1. Regular use in the customer's home of one or more medical life-support devices essential to maintain the life of a full-time resident of the household; and/or
2.

A full-time resident of the household is: a paraplegic, hemiplegic, quadriplegic, multiple sclerosis, scleroderma patient, being treated for life-threatening illness, and/or has a compromised immune system.

These are in California, but I'm sure they have them in many other states as well.