JellyBelly and "Are you alright?"

Discussion in 'Fibromyalgia Main Forum' started by Cactuslil, Jul 28, 2003.

  1. Cactuslil

    Cactuslil New Member

    Yes, NO and more NO! Since you asked I will give you a straight answer. The spinal stenosis, DDD, and nerve entrapment due to the collagen disase, has begun to progress and of course some spinal damage cannot be corrected with surgery or due to complicating factors, surgery is not an option.

    Those of us with FMS/MPS sooner or later, normally develop a mitral (sp) valve click or murmur. It is the only valve in the cardiac proper made of collagen and therefore the Mital Valve Prolapse. PVC's are also common among us. Now I'm on the C-Pap with oxygen. I am anaphalactally allergic to morphine and was one dose from a fatal incident. I recognized soon as I took one when I finally got out of the hospital and left along....first it was blue and I'm allergic to the color alone; then the swelling began, the edema, the throat....I was released with a few days home health and I immediately called the nurse...well, we got through that and I flushed them down the toilet!!

    After that rigamaro, the doc has me in a full hospital bed with a spinal mattress. I am to use the wheelchair to get everywhere.

    Last week or so I took a full face fall on concrete..that really took the wind out of my sails so I am trying to recouperate. I have not yet let the doc know about the shoulder/deltoid business but the powerchair he fussed about (the TX Medicaid had rejected his selection of a chair but he wrote a letter stating I have a spinal condition that usually doesn't progress but he fears mine may progress and this chair, a BRUNO, can have options (such as rising up to a level to cook, clean et al.) should I become completely unable to use my legs.

    I am on STRICT orders to use the bed, the "chair", no mopping, sweeping, lifting. I will be discharged as a patient if I do not comply.

    Am I alright? I am trying but there has been deteriation I have not broke to him yet...he has been on vacation and I don't want to hit him with this right off the bat. There are now no docs in this town that will accept medicare or medicaid!

    We need to watchdog the House and Senate as they are fixing to debate home health care & meds vs. care facility homes ie. "nursing homes". This is a big one and one we must defeat. Some of us do not have hubbies, families ect. and I may fall into that category.

    Am I alright? I awake each day wondering the same thing. Love Cactus.
  2. Cactuslil

    Cactuslil New Member

    I used to rant and rave on here about "mitagating your losses" as I was horrible about pushing myself to the limit,still doing it apparently but this time I have told everyone who may enter my domain that there is no option but that I cease and recuperate less this spinal bussiness causes me to have to have surgery....it would also be high risk as I am into my 9th month of being completely off steroids (with 9 more to go atleast before it is all out of my system).

    If I would have stopped when the doc said hit the powerchair a year ago BUT I didn't, perhaps I would not have pushed my spine beyond its capacity. I am hoping there is no serious damage affecting my arms....although I have noticed when I stand very long with out my cane, I will have to hold my forearms up as the upper arm cannot hold it in a normal down position.

    Mitigate your losses.....I must learn that and do it! Cactus
  3. Mikie

    Mikie Moderator

    You know you are in my prayers. I am really so sorry that you have had such a bad time of it. Do let your doc know what is going on and I hope you start feeling better. Take good care of yourself.

    Love, Mikie
  4. Seagull

    Seagull New Member

    I hope you have the support you need from your family to make it easier for you to follow all your doctor's recommendations and instructions. I am so glad that your doctor fought for you to get the right type of power chair that you need. Using the wrong one can only worsen the symptoms. Sometimes I think these agencies believe that "a chair is a chair is a chair" as though it really does not make a difference which one the patient has. And of course they are only interested in the bottom line -- which is the cheapest one we can get her to take? It is a wonder that they can sleep at night!

    I hope your poor body heals fast from that fall you took. And I can sure sympathize with you about the shoulder/deltoid problem. Mine drive my massage therapist crazy trying to keep ahead of the knots and spasms there. (As I may have told you before, I am also one of those who have both FMS and MPS -- or CMP, as it is sometimes referred to -- and having both of these DDs makes us real challenges to come up with appropriate treatments for. I don't envy our doctors.)

    You hang in there and remember you are always in our thoughts. Take care and lots of soft hugs. :)

    seagull
  5. Cactuslil

    Cactuslil New Member

    To Madwolf: Like the song says "all in all she took it like a man" comes to mind. Being LDS sackcloth & ashes are an anathama but so is failure to ask the Bishop for financial help, of which I am guilty...not pridefulness just presently I do not hold a temple recommend but am working like a beaver to get one by January; my son will be 12 in June.
    *
    Well believe it or not as I was purveying my back-upped tub, hemostat in hand to pluck whatever vermin or root happen to come up, my poor son hopped across the bath seat and not knowing I was in the process of "going down" used my back for support and I had to use my shoulders or fall into the back up with contained what looked like illegally dumped oil! I screamed and he already knew what had happened so he helped rub my shoulders until the daggerlike pain relieved itself. He is a true blessing!
    *
    Well the ole Cactus still has a prick or two and living in the ElPatron section of Texas there is no shortage of crap to go to bat about. But we ALL, all over the US had better heads up and get OUR lobbyist to put the kabash to further services cuts...then to our State reps and senators..don't be bashful. I can raise much cain from the bed!
    *
    Thank you all for caring. It does get very lonely and when it is unbearable, there is this place I have called home for three years, four come September. Love CactusLil'