[Christina86]

So.

Because of my disability (Spina Bifida localized at the L4/L5 vertebrae) I have absolutely no feeling in my feet. Past my knees, I have feeling down one side of my legs (the inside) and not on the outside.

This is important to note, because of what has happened.

I'm prone to pressure sores. Well, I was in the past anyways, winding up with them fairly frequently on my feet. Not so good.

Well guess what!

I've got another one.

On my ANKLE. And I'm pissed. (Likely caused by a scab that WAS there because of a shaving incident. And probably removed because of transferring into/out of my wheelchair. The foot rest is metal and I do realize my feet have been bumping it, at the very least).

Went to the doctor. Apparently it's got a minor infection. So add a special gel/cream to all of my regular wound care.

$55 for TEN FREAKING DUODERM patches (they're gel-ish and really good stuff) to heal said wound. (It's likely a good couple of skin layers deep. Not the deepest by any means, but enough to bleed. Ick)

And that (the DuoDerm bandages) will last me... 10 days.

Back when I was seen at the childrens hospital, I was "threatened" by one of the nurses there that she never wanted to see me again with another pressure sore.

Well, it got me to pay attention enough to not get any more.

Until now.

I feel like my body is falling apart.

I just got over another bout of tendinitis in both wrists (from wheeling and computer usage).

I'm still dealing with a UTI (another common occurrence with my disability) and have meds for that.

If it's not one thing, it's another I tell you!!

/rant

I hate being disabled.

[(JD)]

Yes, it is challenging to live with a disability!

May I reframe the situation for you though? (I know my pain T does this for me, when I forget and need it...)

Yes, you've lost sensitivity in your legs, and probably for that reason weren't able to realize the severity of the result of the "cut." BUT many people have that happen, even those without a disability. It happened to you, and while it might take a bit more to heal, it's how it is for you and your body.

I'm sorry this happened. Can you switch the way or type of razor used so that you can't cut yourself? (I have to use an electric razor! I refuse to let my leg hair grow, yet it's become something that is very difficult for me to manage...I'm hanging on as long as I can !)

Sores are no fun! Especially when you allow yourself to categorize them as "not supposed to happen." Yeah, things do happen.

(((((((big hug)))) I hope the "hate" part is transient too. It only destroys us, and our ability to enjoy what we do have. I wish for you good thoughts and a happy day.

[January]

((((((((((( Christina ))))))))))))))

I'm sorry this has happened.

[Yoda]

I am sorry you are not well. I hope you heal quickly.

Do you really need to use duoderm when you are doing daily wound care? Duoderm is great stuff - when I was working we often would leave it in place for a week or so. Of course that was for "simple" wounds, not one that was infected and needing daily care. Perhaps you could use an alternative cheaper dressing while the wound is infected.

[VickiesPath]

(((((((((((((Christina))))))))))))))))))

I'm so sorry this has made your week such a pain!!!!

I, too, live with a disability. You can't see it until I fall down or walk into a wall!!! Then it's really embarrassing!

Hang in there, kid. We are human = not perfect.

[Rhapsody]

Originally Posted by Christina86

I feel like my body is falling apart. (AND) I hate being disabled.

I totally understand how you are feeling as I am in the same boat... and to make matters worse I got just confirmation yesterday from my primary doctor that my body is deteriorating from the inside out and that she is highly concerned about me and my body when I turn 50 and that's in eight years..... guess I will just keeping doing what I have been doing, taking it one day at a time and enjoying the people that I am lucky enough to have share my life with me.

(((( HUGS )))) ~ ~ (((( HUGS ))))

[Christina86]

((((((((((everyone))))))))))

Thank you for your hugs and support. It makes me feel better.

Originally Posted by _Sky

Yes, it is challenging to live with a disability!

May I reframe the situation for you though? (I know my pain T does this for me, when I forget and need it...)

Yes, you've lost sensitivity in your legs, and probably for that reason weren't able to realize the severity of the result of the "cut." BUT many people have that happen, even those without a disability. It happened to you, and while it might take a bit more to heal, it's how it is for you and your body.

I actually never had sensitivity in my legs to begin with - I've always had this. Thanks for the reframing though - it's kinda cool to think of things from another perspective.

Originally Posted by Yoda

Do you really need to use duoderm when you are doing daily wound care? Duoderm is great stuff - when I was working we often would leave it in place for a week or so. Of course that was for "simple" wounds, not one that was infected and needing daily care. Perhaps you could use an alternative cheaper dressing while the wound is infected.

Wise Yoda! I was going with what the doctor said - who clearly doesn't know anything about DuoDerm and pressure sores... I had to have them specially ordered into the pharmacy on campus even! You're right, it's supposed to be left on a week (max) per bandage unless its oozing and icky. I'm not changing it until I see a doctor tomorrow. (Since it IS infected, I'll go with what they say about applying the cream/gel stuff though).

At least I remembered I had used the DuoDerm in the past, because I cannot afford to be paying $55 for 10 days worth of bandages! (I am using this though since I'm not sure of a comparable brand.

[Yoda]

Originally Posted by Christina86

Wise Yoda! I was going with what the doctor said - who clearly doesn't know anything about DuoDerm and pressure sores... I had to have them specially ordered into the pharmacy on campus even! You're right, it's supposed to be left on a week (max) per bandage unless its oozing and icky. I'm not changing it until I see a doctor tomorrow. (Since it IS infected, I'll go with what they say about applying the cream/gel stuff though).

At least I remembered I had used the DuoDerm in the past, because I cannot afford to be paying $55 for 10 days worth of bandages! (I am using this though since I'm not sure of a comparable brand.

Oh my - well thank you. I have my moments. Be advised that I have not worked in ten years so I am not up to date but if you need to do daily cleansing or debriding of the wound I think some vaseline impregnated gauze covered with plain gauze would probably be cheaper until the infection clears. We had a special wound nurse at my hospital; is there one available for you to talk to where you are?

[lynn P.]

Hi Christina,
so sorry to hear you're not well and feelng frustrated. My sister in-law's sister has spina bifida an dshe struggles also. I hope your infection feels better very soon. Do you make sure you take a good multi-vitamin with added vit C and zinc. In additon make sure you have acidolpholis in your diet from yogurt or capsules and cranberry juice - this will help with the UTI. I hope you feel better soon.

[Lost71]

((((((((Christina))))))))

I'm sorry all I can do is give you hugs! It sux having a disability, it sux being in pain. You're a good person and don't deserve it! If I could bear it all for you I would.

Peace and Hugs,
Julia
xox

[Christina86]

Thank you all again (((((((((((hugs))))))))))))

Originally Posted by Yoda

Be advised that I have not worked in ten years so I am not up to date but if you need to do daily cleansing or debriding of the wound I think some vaseline impregnated gauze covered with plain gauze would probably be cheaper until the infection clears. We had a special wound nurse at my hospital; is there one available for you to talk to where you are?

No nurse unfortunately, because the nurse who originally dressed my wound didn't seem to know anything about pressure sores. Sucks. Alright, I'll talk to my (hopefully) new GP tomorrow and see what she says. Hopefully she's knowledgeable about this sort of stuff. Until then, the DuoDerm patch stays on. I'd rather have it covered than risk the infection getting worse.

Originally Posted by lynn P.

Do you make sure you take a good multi-vitamin with added vit C and zinc. In additon make sure you have acidolpholis in your diet from yogurt or capsules and cranberry juice - this will help with the UTI. I hope you feel better soon.

I'm going to have to lookup acidolpholis since I don't have a clue what that is... but thank you! I'll look into a multi-vitamin as well.

[January]

Trust me, take the acidolphilous.

[(JD)]

I think airing the sore will help some too... give it air, uncovered for an hour or two a day? Have you called doctor yet???? This is important.

[Christina86]

I went to see my new doctor on Thursday.

And I absolutely LOVE LOVE LOVE her. Especially since she actually knew what she was talking about regarding my disability and my pressure sore. So she gets brownie points.

She said it was good to have a GP because that way someone is there to hold me accountable about things (which I do need, especially regarding my frequent infections and injuries).

She told me I *can* air the wound for an hour or two a day (what you said Sky) but only if I'm sure it's not touching something it shouldn't be. I also have to be more careful because the weird weather we've been having could make it worse (too much dampness).

She DID say the infection was gone (yay) and told me to cut the DuoDerm into quarters, since my wound is pretty small - and it still covers the entire wound! So automatically, she's basically saving me oodles of money.

Asked me all sorts of questions regarding my mobility, ability to function independently, and dutifully noted all of this in my electronic file (on their secure system which they all use). She gets brownie points for asking so many questions, but they weren't dumb ones either. She actually understood what hydrocephalus was and that my having the same shunt for over 20 years is AMAZING. (It really is - I've got a "child sized" shunt that's lasted and continues to work for this long)

And then she looked at my wound, told me that it looked good - measured it, told me to take care of it for two weeks and if it wasn't noticeably smaller to come back.

She also said that since I know my chronic issues better than anyone, that I could make follow up appointments whenever I needed. She works about 3 days a week on campus, so that's pretty good.

(Oh, and she had a look of utter bafflement when I said the previous doctor told me to replace the DuoDerm patches every single day. I admit I laughed a bit inside over that)

I like her. A lot. I just wish I could keep her once I leave my university... But at least someone now will keep me accountable for my health and wellbeing!

[January]

Maybe you can see her on the two days she doesn't work at uni after you graduate.

[Christina86]

If she's actually got a job outside of the days she works on campus. I don't really know. otherwise, I'll ask for a referral to someone if she knows anyone. I'm not going to worry about it right now, I still have a year.

[EJ711]

Christina,

I'm so sorry about your disability and most recent pressure sore!

I don't like the idea that the nurse threatened you about not wanting to see you again with another pressure sore!

Fifty-five dollars is a lot of money!! Doesn't "Canada-Care" cover it?

EJ

Originally Posted by Christina86

So.

Because of my disability (Spina Bifida localized at the L4/L5 vertebrae) I have absolutely no feeling in my feet. Past my knees, I have feeling down one side of my legs (the inside) and not on the outside.

This is important to note, because of what has happened.

I'm prone to pressure sores. Well, I was in the past anyways, winding up with them fairly frequently on my feet. Not so good.

Well guess what!

I've got another one.

On my ANKLE. And I'm pissed. (Likely caused by a scab that WAS there because of a shaving incident. And probably removed because of transferring into/out of my wheelchair. The foot rest is metal and I do realize my feet have been bumping it, at the very least).

Went to the doctor. Apparently it's got a minor infection. So add a special gel/cream to all of my regular wound care.

$55 for TEN FREAKING DUODERM patches (they're gel-ish and really good stuff) to heal said wound. (It's likely a good couple of skin layers deep. Not the deepest by any means, but enough to bleed. Ick)

And that (the DuoDerm bandages) will last me... 10 days.

Back when I was seen at the childrens hospital, I was "threatened" by one of the nurses there that she never wanted to see me again with another pressure sore.

Well, it got me to pay attention enough to not get any more.

Until now.

I feel like my body is falling apart.

I just got over another bout of tendinitis in both wrists (from wheeling and computer usage).

I'm still dealing with a UTI (another common occurrence with my disability) and have meds for that.

If it's not one thing, it's another I tell you!!

/rant

I hate being disabled.

[Christina86]

Originally Posted by EJ711

Christina,

I'm so sorry about your disability and most recent pressure sore!

I don't like the idea that the nurse threatened you about not wanting to see you again with another pressure sore!

Fifty-five dollars is a lot of money!! Doesn't "Canada-Care" cover it?

EJ

The nurse threatened me for good reason in hindsight, but I didn't like it at the time. It wouldn't have worked for all people though so I hope she changed her tune with other patients!

Canada isn't exactly as much of a free healthcare country as people would like to believe. Many medical procedures are covered, but med costs are not (unless you've got insurance which covers some). Things like Duo-Derm aren't covered by anyone unfortunately because you don't get them via prescription (which means they're not covered by insurance) and aren't covered by the healthcare system either (our health care system covers some things, but not everything!)

[EJ711]

Hi Christina,

I'm glad the nurse's threat had a good outcome.

Thank you for the breakdown on "Canada-Care".

I'm glad you're feeling breezy today.

EJ

Originally Posted by Christina86

The nurse threatened me for good reason in hindsight, but I didn't like it at the time. It wouldn't have worked for all people though so I hope she changed her tune with other patients!

Canada isn't exactly as much of a free healthcare country as people would like to believe. Many medical procedures are covered, but med costs are not (unless you've got insurance which covers some). Things like Duo-Derm aren't covered by anyone unfortunately because you don't get them via prescription (which means they're not covered by insurance) and aren't covered by the healthcare system either (our health care system covers some things, but not everything!)

[Miracle1986]

(((Christina)))

[dolphinmkr44]

Sending you lots of . Please take care of yourself.

[Michah]

(((((Christina))))) you sweet, sweet woman

Biggest hugs I can muster for you dear one.....

Michah

[(JD)]

Just wondering how you are doing "today".... I will pray that you will end up with a motorized wheelchair! Wheeling has proven to degrade not only the wrists, but the shoulders etc!!!

I will also hope that you will receive an electric razor: no cuts! I just can't use even "safety" razors (that name is long overstayed, as it only is safe compared to the old straight razors!!!!)

I know part of your feeling is probably self degradation...I mean how COULD you allow all this to happen!!??? Well yeah, it's part of life. And, yeah, sometimes it really isn't any fun.

Try not to hate too much, it only hurts self. Try not to be too angry either, for same reason. Though I have to confess, I've had a bit of anger today myself. (Perhaps you can understand the situation: I, also, somehow have been fighting an infection which I had no clue I had. I don't have feeling in much of my body now, and no one lives with me or checks me over etc. so? You know. My MD says it showed up on my annual blood work labs she insists upon (thank you Lord!) So ok, she sends me to a local grocery store pharmacy rather than my own because the local one is giving the antibiotic "free". But what I didn't realize is it was a generic, not the brand and she specified and the pharmacist gave pretense it was. I took it and ended up in the Urgent Care Center. Well, the ER doctor gave me a new script for the brand ... that was Last SUNDAY. It's taken me all week to find a pharmacy that can even ORDER the Brand, because of the new health "care" rules, they mostly only dispense generics. So now I have to worry about being able to have medication I can take --ever? No, I won't worry, but I sure was ticked for a bit. This is America! I'm not used to not being able to get what I need. )

Anyway, maybe my rant helps you? Thanks, it helped me. Hope you know I understand.

[Christina86]

Originally Posted by (JD)

Just wondering how you are doing "today".... I will pray that you will end up with a motorized wheelchair! Wheeling has proven to degrade not only the wrists, but the shoulders etc!!!

Maybe in time... at the moment I'm looking into seeing a chiropractor which should help with my neck pain which is my biggest issue. My knots I can deal with, and at least my tendinitis and carpal tunnel haven't come back since the last time.

I will also hope that you will receive an electric razor: no cuts! I just can't use even "safety" razors (that name is long overstayed, as it only is safe compared to the old straight razors!!!!)

I switched to wax. It helps that I've got less feeling further down my legs...

I know part of your feeling is probably self degradation...I mean how COULD you allow all this to happen!!??? Well yeah, it's part of life. And, yeah, sometimes it really isn't any fun.

Try not to hate too much, it only hurts self. Try not to be too angry either, for same reason. Though I have to confess, I've had a bit of anger today myself. (Perhaps you can understand the situation: I, also, somehow have been fighting an infection which I had no clue I had. I don't have feeling in much of my body now, and no one lives with me or checks me over etc. so? You know. My MD says it showed up on my annual blood work labs she insists upon (thank you Lord!) So ok, she sends me to a local grocery store pharmacy rather than my own because the local one is giving the antibiotic "free". But what I didn't realize is it was a generic, not the brand and she specified and the pharmacist gave pretense it was. I took it and ended up in the Urgent Care Center. Well, the ER doctor gave me a new script for the brand ... that was Last SUNDAY. It's taken me all week to find a pharmacy that can even ORDER the Brand, because of the new health "care" rules, they mostly only dispense generics. So now I have to worry about being able to have medication I can take --ever? No, I won't worry, but I sure was ticked for a bit. This is America! I'm not used to not being able to get what I need. )

OMIGOSH. That's horrible, I'm sorry. I'd be ticked off too.

Thanks for your "rant", it actually was uberly helpful, and it helps that someone else is around I can relate to Yours truly got infected AGAIN. Of course I only noticed it when my mood became horrid (UTIs in children cause moodiness... except in me, as an adult I still get moody ) So I get it treated last week and it's probably been impacting my mood for... weeks? Could be upwards of a month. Freaking glad it didn't get up to my kidneys. My urologist isn't going to like me - I go in for an appt for tests on the 31st, see him to go over test results in June and then maybe I can finally convince him to put me on a daily antibiotic instead of this "treating it as it comes up" boloney.

I'm trying to "Let Go, and Let God" when it comes to me being frustrated with people and situations regarding my disability... but darnit, it's HARD!

Heck, this past week I got turned away from a job interview because an INTERNATIONAL survey company has an office in my city that isn't wheelchair accessible. It's up THREE flights of stairs. Only my luck, they're the only ones to call me back for an interview. FAIL.

Ah well. thank you all lovelies.

[(JD)]

GRRRRRRRR!

Wow, you know what? Maybe mine was affecting other areas of my body! Now that the AB is done with, I'm noticing less pains in "organ" areas. God was in control for me, since the MD hadn't bothered with me since last June, and then out of the blue says, "I need to see you."

Now I just need to rest.
But can't.
I've just about ended sorting through what I hadn't sorted through last year after my mom's death ... her stuff and mine that doesn't fit in my small home. I've been paying my assistant out of pocket, awaiting the reimbursements only to find out a few weeks ago that my attorney has NOT even submitted my requests! I'm not made of money, and having money scares on top of being disabled is overwhelming (if I take it on, rather than give it to God) ... too much "not in control of circumstances" thinking.

I know. I care.