RSD FAIRY UPDATES

JUNE 4, 2012~  


A LOT HAS HAPPENED IN THE 9+ months since I last wrote. I don't remember if I wrote that I moved back to the foster home in Junction City back in October or not?? It's gone pretty well. I was able to get my own dog. He was a chiuiauia named scooby and he was a sweetie, but about a month in he ended up biting my nurse so the owners of the home said I had to get rid of him because they couldn't take the chance of being sued. I understand where they were coming from but it was sad. I found him a real good home right away and I've recently heard that he's doing real well!


I'm getting ready to move again this coming sunday. I'm moving into a mobile home with my ex sister in law; Valerie. We've known each other since I was 12. I'm excited to be getting out of the foster care system as I'm not needy nor old enough for it, as far as I'm concerned.


The state will provide a caregiver and I'll get food stamps again. My rent will only be $350/mo. which is $200 less than I was paying here. it'll be nice to be able to go shopping once in a while and save a little each month so I can eventually go down to so. california and visit my Mom and Vincent.

I have recently learned a lot more about RSD and the various symptoms that can accompany it.  The Sympathetic Nervous System controls the functions of the body that we don't have control over, due to this I have discovered that my mucous membranes aren't producing enuf saliva, which is why I have had to suck on hard candies constantly for years. I thought it was due to the meds I take, but it's far worse than that and not only that but I have a hard time swallowing due to this and have to swallow food with water.
I also developed chronic dry eye and was told it was also due to the RSD. Now I have to use restasis drops twice a day for the rest of my life.


I also have developed Osteoporosis in my spine and hips. Now, this is quite common, but not at 48 years old. I also have DDD now; (Degenerative Disc Disease) all up my spine.
What the hey??????? I'm not even 50 and I'm falling apart!


I still have the same Dr. who isn't treating my pain adequitley, so I haven't been able to function very well. Why can't these quacks realize that people who are truly in severe chronic pain need the meds to do anything? Just riding the van to the store causes my legs, feet and back to flare up, let alone shopping. By the time I get there I can only shop for a short amount of time then, I have to turn around and go home. WAAAAAAAA!AAAAAAAAAAAAAAAA!!!


I feel like a whine-bag, but actually I feel it's important that we share what's going on with our RSD so others with this can be informed.  We need to stick together and help each other in any way we can.

The Wee hours of the morning

It's 5 a.m. and once again I'm wide awake and hurting badly!  I keep thinking about
going to yet another new Doctor. It should be sometime next week.  My mind wont 
stop going over and over all the things I want to say to him. I have written most of it down

but I continue to think of more things he should know.  How much is too much? He should know my recent history with Doctor's.  He should know that although, yes, I am a Doctor Shopper, that that term doesn't always mean; Druggie!
I have never dropped a Doctor because He/She wouldn't give me pain meds! Until last August I never had trouble with that. My Doctor's all treated my pain fairly adequitely.
Then, On August 24th 2009, I fired my caregiver, who, being an obviously maliscious and vindictive woman, called my caseworker at Senior and Disabled Services; Karen Phillips and told her that I was injecting my morphine.
Instead of checking this accusation out in any way, shape or form, Karen immediately called my Doctor; Mary Gabriele, M.D. and told her what was told to her by the caregiver.  Thinking that Karen was an accurate source, Dr. Gabriele stopped all my meds, no weaning off of them, just stopped them, "fired" me and I later found out that because of this accusation I could no longer go to any PeaceHealth facility!
I was numb with shock!  Which, lasted for a few weeks.  I couldn't function, I couldn't even fight back!
My Mom called SDS for me and spoke to Karen's Supervisor, who did absolutely nothing but defend her employee.  


Here it is almost 8 months later and I still have not had my pain treated! I live one day at a time, like addicts do, because whenever my mind wanders to tomorrow and the thought that it will be just as painful as today, I feel panic coming on, literally! I have to talk myself down, so to speak and concentrate on the blessings of today!
I finally filed a complaint with the State Medical Board just about a week ago.  Don't ask me what took so long, sometimes I don't understand myself either.
I plan to call SDS tomorrow and filing a complaint there as well.  Karen Phillips no longer works there, I don't know why but the least they could do is file a retraction in my Medical Records!

DRUG SEEKER:


Hell yes I'm seeking drugs, I am in extreme pain every day, I need help so I can continue on with my life.  I'm also a Therapy-seeker; I want Physical therapy to help me walk again.  I want help to Live again!  I'm also seeking diagnosis' for the lumps in my glands, the swelling and pain in my neck and the 2 herniated discs in my low back.  I'm seeking Lyrica for the Fibromyalgia. I have a form for the new Doc to fill out to get Lyrica free from the Drug Company.
I'm seeking a new wheelchair as the seams are coming out in the one I'm currently attached to. I'm seeking a walker or cane so when my legs get strong enough, (and they will get strong enough, dammit, LOL!) I can walk with their help!

A NEW DAY DAWNING:

When I think of the person I was just 2 months ago, it really amazes me! As I've said in a previous entry; I didn't do hardly anything for myself! I was so depressed and stressed out, I just wallowed in it all day and night. I lay in bed, unable to function. I rarely ate, and I'm ashamed to say; rarely bathed! I changed my clothes like once or twice a week. I did shower once a week but to the clean person I usually am, this is rare!  I know it's hard to understand how someone can live like this. 'Just push yourself', I can still hear people saying.  But, it just isn't that easy!  when you're in that deep of a depression, you are almost paralyzed. It took every ounce of energy I could muster just to get up to go to the bathroom!
Since moving in this Adult Foster Home 2 months ago, something changed within me! I believe just the fact that all that stress was removed from me has given me a new lease on life!
For the past 8 years I have aspired only to die!  That's all I wanted out of life. I had no more hope and only pain to look forward to, or so I thought.  I wouldn't take my own life as I promised my God and my son that I wouldn't!  But, man! I wanted to die in a bad way!  Unfortunately, I talked about it often and that couldn't have been healthy for my son to hear, I'm so sorry now, but is it too late? Will he resent me for this, for everything?  I can only pray he will!
Now, I want to live!  It's actually a foreign feeling for me, but I do! I want to someday take complete care of myself again, be self-sufficient.  
Here, I do almost everything for myself.  Although I still need Rose & Tiffany to wash my clothes, change my bedding, cook my meals and I know that sounds like too much but, I do alot more for myself than I have in years!

Every day I get up, brush my teeth, wash my face, get dressed in actual clothes, not p.j.'s!
Thank you Rose, Tiffany, Joon & Nanay for all you've done and continue to do for me! 
it's a big deal when living in this situation to feel so welcomed and at home in such a short time, they're really wonderful, awesome people!!!
I eat 3 meals a day! I think this is the first time I've had the appetite to do that since forever! I bathe often, in an actual bathtub! Ahhhh! I've lived with only a shower for the past 7 years! It's so nice to soak again!
I keep my room straightened. Put my own clothes away, straighten my bed every day.  I still need them to sweep my floor, but I even take out my own trash!  This may sound so trivial to most people but to me all these things are a HUGE deal!
Because I have to go outside to smoke, I'm up most of the day! I actually have a tan for the first time in 9 years! And this is springtime in Oregon! Imagine that!
I only lay down a few times a day for an hour or so, as the pain when sitting up too long becomes impossible.  
I have strategically placed my laptop on a desk across the room so I have to sit at it instead of laying in bed!

I crochet again, as often as I can. I really enjoy making things for people and am aspiring to make things for sick people in the hospitals, nursing homes, etc... I just have a yarn shortage at the moment, but hopefully soon I can find some in a thrift store or something.  Although Crocheting causes my hands to go numb, I feel so fulfilled doing it and it's a great distraction against the pain!

Well, It's 6 a.m. now, time for a smoke....
I pray everyone has a wonderful day and learns to make an adventure out of every one!