Topic : Living with Chronic Pain

My  appointment went well, I think. They sent an Open Door bus to get me. The driver was driving around the wrong mobile home park at first so he was half an hour late. Then I got my first ride on a wheelchair lift... while standing up!... due to my coming with my rollator.

First part of my interview seemed to be to confirm I was who I said. Asked me my name, how to spell it, my address, my birthdate, and my age. What, did they think I'd send a ringer? *chuckle* Of course, I can read upside down so if I wasn't the person I was on paper, I could have faked it. LOL

She also asked me about my limitations, etc. Same stuff that was on the paperwork. Then she, an RN, did the "mobility assessment." This started with my walking a few steps unaided. She  then tested my balance by having me stand near a wall and giving a small push on my chest, twice; once with my eyes open and once with them closed. Good thing that wall was there, both times! After that she said, "Well, I think we'll skip testing you on the stairs."

It will be 3 weeks before I know if I'm in or not. And, until the end of the year the Open Door ID also gives free fare should I ride the regular bus. So that would be a bonus for me. But I'm hopeful on that front.

I really would like to be less dependent on other people. This would be a step in that direction.

Really trying to keep my chin up. Not easy between health and the divorce mess, and then people getting on me for being "too nice" to Keeper. My son and daughter are included in that rabble. Robert, my son, and I argued about that last night, then he tried to say I was crying not because of that but because of the stress Keeper's putting me through. Bwuh?!? *blinks*

And yet, despite all this, I need to remember I have an ulcer and not get stressed. Right!!!!

Today Robert's coming to take me grocery shopping. Need to get medicine, too... switching from Lexapro to the generic version of Celexa to save money. Don't know when he'll be here. But if I know him, he'll call to let me know when he's on his way.

Back's hurting some today as is my left ankle. Hope it doesn't get worse. Of course, we're due some rain tomorrow, so that's probably it. I still need to get a primary physician, too. Of course, right now I don't know if I'll be on Keeper's insurance or Medicaid or what in a few months.

Anyway, I have the attention span of a flea today, so I'm off to double check my grocery list and see what I can find to entertain my brain for a while.

Blessed be,

Morgan

I was born with multiple problems, and only walked for the first time at age 7. I have walked with the aid of calipers since then but still managed to live a productive and full life.  I have 3 children and 2 grandchildren. In 1988 I lost my first husband as a result of a motor accident, and subsequently married my 2nd husband in 1996 - he too is tremendous when it comes to housework - which I can't do as I have now been diagnosed with Limb Girdle Muscular Dystrophy which is very debilitating.  I live on anti infammatories and painkillers just to get through the day.  I run and advertising business from home, which keeps me in touch with the outside/music world.  have you tried doing something from home, which will keep you occupied??  I too have lived with pain all my life so I understand fully how you feel!!

what crapola!  what is not to believe?  i thought the diagnosis was made... however -- it is great to not have the first neurologist -- he sounded like the last in his class...

 

hank and i both take cymbalta -- the couple that depresses together, stays together??? nah, both of us are taking it for the old neurotransmitters (you're right, why not get a 2-fer?) but we also each noticed a real mood elevation.

 

hang in -- thinking of you --

prof

i don't question the why or the how -- but ibuprofen is keeping me going the last few days.  i'm up to what i think is prescription strength and am not  "supposed" to be taking it -- but, by god, it is working better than percocet or fentanyl.

 

also, i picked up these funky eye wraps with gel inside -- keeping them in the fridge -- they feel so wonderful and allow me to meditate on that area of coolness, else my mind starts to frustrate itself with thinking about how badly my legs and hands hurt.  they can be heated in the microwave but i've not tried that yet.

 

we are reinventing my closet this weekend.  i went through every item of clothing i own and only tossed out a few things (very surprising).  hank is going to put up closetmaid shelving starting very low so that i can reach my things from the wheelchair.  four or five shelves ought to do it... and then if i can just *maintain* things instead of opening the door and tossing them in out of frustration, well -- good!

 

yesterday i wrote about how i didn't want him to do anything for me.  and all he has done since i wrote that is one nice thing after another.  bad prof.  very bad prof.

 

have a delightful weekend -- just do it --

prof

I am not sure I take 1200 mg a day in neurontin if I don't  take the full dose I feel the pain worse...today I got a full body view of myself and I havn't done that since this happened to me ...now I am trying to talk to myself and say it is ok .....I am trying to loose the weight...but I can't help depressed about everytime I see that image now..I don't know Prof how I am going to pull thru this...I pray but keeps getting worse not better.....the pain as you know is enough to shoot us down...somehow I will talk my way back up out of this I know.....I just feel like I have lost control....I too go around and keep trying to function as I use to.......but while I try the pain hits me..either the nagging pain or just a quick jolt right up the leg from the foot...so than I get mad......and then depressed.....than I eat.........than right back to the beginning of the circle.......

The "diagnosis" was made by the first neurologist...mostly I think because he didn't know what else to call it...because he told me "chronic pain syndrome" in his office and wrote "fibromyalgia" on the chart....yeah yeah same difference but he could have atleast picked one and stuck with it.

 

This new neurologist said it may be something else that isn't showing up in tests yet....or that I'm not sleeping well...or maybe other things...so he's starting with the not sleeping.

 

I feel really weird today...kind of tingly and weak and achy....it's strange. I felt like that the past couple of days and it went away some time this morning and returned in the afternoon. :\

 

So we'll see where this goes....

I too suffer from degenerative disc diease, I'm on lortabs and muscule relaxers to help ease the pain, I've got anniexty and panic disorders along with severe depression and many other disorders, I applied fer disability and it took me 5yrs to get it, it's not really alot but I manage to live on what I get, I'm around a lot of animals and they help me out with my depression, if it wasn't fer the animals I don't think I'd be here now, but either way just thought I'd let you know that I know what you're going through cause I'm in the same boat.  colt

I personally understand chronic pain. When a person asks "How are you doing?" You never tell the the whole truth. You will lose friends and family,and like me,be divorced.Being divorced and fighting for disabilty at the same time was no fun at all.My ex was trying to take my son away from me.(he just did not want to pay child support,as I was a wonderful mom,stay at home for the first 4 yrs. to begin with)My fight for disabilty took 6 yrs. and right in the middle I was divorced.Anyway, I have degenerative disc disease, osteoarthritis in both knees, both feet, both shoulders(so far),I have knees that always want to dislocate since I was 14,I am now 48.I have fibromyalgia(real bad in legs and neck), myofascial pain syndrome,TMJ syndrome,chronic neckache, chronic daily headaches and hormonal migraines.Add in anxiety and depression.No depression did not cause my pain,it was th other way around.Since my memory is bad(fibro fog) I don't rememebr everything,oh-I do have ulcerative colitis.

I do think the world needs to be educated on chronic pain,we are not malingerers looking for attention or just to fake it so we can get disability.It is no fun being disabled,I never ever am wihtout pain and I never have a good day,I might have a better day.Just ebcause I can do something one day,does not mean I can do it the next. I will have to recover the following week from it.

If it was not for my love of animals,my life would be empty(other than my son,my love of my life).I do figure I will forever be single.I will always have nmy pets giving me love and companionship.

ok I will try again....long story about trying to post today......anyhow I wanted to apologize for yesterdays posting ......I realize that I am letting the disease win.....today I found this maybe it will help

Words Of Hope from a RSD/CRPS survivor:
(Diagnosed in 1994) There is hope, you can survive this disorder!
Take good care of yourself everyday. It's important to rest, and also to get plenty of exercise, gentle stretching and strength training. Follow the guidelines below for diet and exercise tips. There is always a solution to the everyday problems associated with RSD/CRPS such as: assistive devices for things that are difficult for you to do: opening jars, cutting, holding books, steamer floor mops. It's OK to wear braces during flare-ups, but it's important not to wear them all the time, only when you need to keep going when the pain is deterring you. Patients who take responsibility for participating in their own recovery do better than those patients who see themselves as helpless victims of their disorder. Please ask for help if you need it.
Watch out for Denial:
Depression - Emotional turmoil - Negative thinking - Irritability - Anger - Loss of self esteem