Flaccid & Pressure Sores

[lynnifer]

Originally Posted by bob clark

Hey, have you've gotten those stubborn wounds to heal yet? Are you still using that electrical device to help with the healing? I remember you had very positive things to say about it.

Why do you get so many wounds in the first place? And why are they so difficult to heal? Do you have a blood disorder or other problem that causes you all this grief. It's hard to believe you have all these problems yet hold down a full time job.... a swing-shift job at that!

I hope you're doing okay.

Hey Bob. First - I really enjoy your posts. It's nice to hear from other seasoned 'vets' on this SCI crap.

No - I still have 2 wounds on each foot - heel and fifth meta-tarpel area on both. The heels have been affected since age 17 - I'm now 33. I've tried skin grafts and every other potion known to mankind from turmeric powder to Oasis skin dressings. The fifth metatarpel ones appeared 3 years ago. My right foot is definitely better than my left foot, always has been. The scar tissue is unbelievable. I've had osteomyelitis 3 years ago and been on a picc line thrice - the first time I took 3 months off of work and by the end I was a basket case, even seeing a psychologist. The second and third times I continued to work full time. I'm just one of those idiots who feels I am defined by what I do .. so I must work .. I could not stand to be on assistance. Fortunately I've put myself into a position at work where I hopefully will never have to be on assistance from the government.

Trying to deal with doctors is practically impossible. I am finding long waiting times in Canada (6 months to see wound care doc and 8 months to see urologist). The wound care doc is two hours away, four hours round trip. My family doc has no clue so this bascially leaves me on my own. Complicating matters is a 'hypothyroid' disorder and the last time I saw the wound care doc he said this makes matters more difficult to heal, especially if it is not under control. I blame my shift work for not being able to keep my thyroid levels stable, but I'm not ever going to quit. I doubled my own thyroid dosage before Christmas and have never felt better energy wise (and hair and nails much better - a symptom of poor thyroid) - but I see no progress in healing. You have to be careful with the thyroid - too much will lead to a brain seizure - or so I was told.

I had quite low levels of iron - 10 is anemic and I tested 12 last September. I'm happy to report that just yesterday I received some encouraging hematocrit results that showed my iron levels back up where they should be - 111 - just slightly low, I was told. I'm quite happy about that as I usually get things that add up, this time something has been cured - ha. I see a nurse every two weeks in my home for these sores - but it is an RPN, not a wound care nurse. The ET nurse has too many patients and I guess I don't rank in priority because I don't get to see her. Basically, I just get my supplies through this nursing agency which are paid for by tax dollars ... if I use my own benefits through work, I'll exhaust the $25,000 lifetime maximum as five dressings are almost $100 ... this is an issue which has been brought to the contract negotiators for next time - I'm currently at $10,000 as it is.

It's believed I also have Endometroisis - of course there's no cure or cause! The only way to definitely tell is to have a laparoscopy procedure. I'm wanting an operation but so far my gynecologist is not in favour of that route - he wants to put me into 'chemical menopause' as he called it. I'm definitely not interested. So monthly, I experience extreme foot and leg swelling or bloating, mood swings, bladder and bowel problems (unpredictable), extreme fatigue and irregular cycles. For the past year I've been averaging about one sick day per month because of the symptoms - they just wipe me out. I've explained what's going on to my employer and they have a wife who experienced a similar thing and are quite understanding. BUT, the swelling doesn't help the healing so whatever progress is made in a month's worth of time is undone monthly. I wear compression stockings. I also use a Flowpress air compression boot system every night - it rids me of the swelling. On an average work day consisiting of a shift of 10hrs, the ratio of how much I'm up in my chair beats how much I'm horizontal .. so I need the compression boot. I'm up for 15-16 and in bed the rest provided I don't have errands to run. On a day off, I'm in bed 12hrs or more, up for less to try and make it up ...

For the past year, I've been having bladder issues - which are more than likely connected to the swelling and endo. I can't get through the night ... I would like to try an indwelling cath at night ... but I don't see the urologist until the 22nd. Normally I use crede and have been great all these years - but now I have leaking. Because it took so long, I developed skin breakdown on my rump over an old flap incision (from age 15) so I will try to be in a good mood when I see him but I will explain how it was detrimental to have to wait so long. I've been trying 'Miracle Mist' on it from the reports I got from here - it works SLOWLY but it does seem to be working. I keep just gauze on them for when I'm at work and change them when I use the washroom - 2 or 3 times a shift. We only get a washroom break at work when it is not busy or an officer is available - this has been an issue since I started here more than six years ago and it has still not been corrected. ONE PERSON handles the radio, phone, walk-ins and 911. Oh to save a buck ... but I digress ... but I still love my job.

So I've tried to demonstrate how this is multifactored - the cause of these wounds. Don't drink enough, need more protein, need to rest more ... difficult when working full time. AB people have trouble with diet, rest and exercise on shift work so I don't expect to be all wonderful at it either.

In the meantime, all this bed rest between shifts has added weight and made me weak. I'm trying to work on that.

My old psychologist had an interesting theory about 'microcells' or something ... interestingly enough I hear of trials going on testing blood for higher levels of cytokines (proteins) in those that suffer pressure sores often. I'm betting I'm one of them. Some people get sore after sore and others never. My friend is a C5or6 quad who's never had a sore ... but she never has to work because of a settlement, and takes excellent care of her diet and gets plenty of fluids. I transfer 15+ times per day on a work day and she twice.

Doctors have told me in the past that I'm killing myself working like I do ... but those same doctors said I should stay in bed ... jeez that would be fun NOT. What are they thinking when they say stuff like that? I get it from nurses I've run into too - you 'should go on assistance.' No thanks. $800-1200 per month in comparison to $50,000 per year? I'll work until I die or can't work any longer - then I'll worry about that when I get there. I'm not cutting my feet off either - that has been a favourite suggestion of doctors as well.

Diabetes runs in family too - I certainly hope that has nothing to do with it - but I have a diabetic monitor and test myself every so often .. as well as a test through my doctor annually (@ December - anniversary when my mother died from kidney failure of her diabetes).

The electrical stim device was a clinical trial - once my iron levels went down and my thyroid went out of whack, they got me out of the study. I'm still in touch with the wound care doc (see him in March) and will ask him to write a letter so I may purchase one through my work benefits - and push my lifetime maximum usage up higher *groan* .. so far it's the only thing that has worked.

I have no answers. I just try to survive, lol. That's all any of us can do.

[Jeff B]

lynnifer,

I admire your resilience in the face of adversity.

I won’t try offering you any advice as we all have to deal with life and SCIs crappy complications and limited options in our own way. I hope that your health improves.

[christopher]

I can't believe how strong you are Lynnifer. If you ever need some down time from all that shit in your life, come take a ride up the 401.

[roshni]

You're an amazing lady, Ms. Lynnifer!

[SCI-Nurse]

Thanks for sharing. Your words will help others.
You are one strong lady!

AAD