Hi Roxie
 

Good luck with the junk going in your veins,and i hope everyone agrees at
work. J. is one of the smartest peeps i've ever meet. And you remember
Mo. heat 107 to go to Drs.is nuts.. Mel that thinky helped Bob a great
deal. There trying to decide whether i Go to ReHab or go for a month
oh Darn..I have 2 Una Boots now from knees to toes,it's to hot for that.
Also surounded by West Niles. :eek: Sue

Been there
 

Mel,
That new boot is what I just got out of. They put me in one of those when I developed the stress fracture in my ankle back before the sacrum fracture. We call them "short leg walkers" here. But it's the very same thing. It's amazing how you can walk in them with a broken ankle or in Alan's case the foot ulcer. They don't let you put weight directly on the floor (on any one spot) at any time. It constantly rocks the foot when walking. The only problem I had was the difference in heel heights from the walker to the shoe on the other foot. It unleveled my pelvic bones and muscles due to the difference in heel heights. I finally bought a pair of shoes that had a heel more the height of the one on the boot. It leveled out my hips better. The other thing I found was that it aggrevated the neuropathy in the heel. Burned really badly. So I got a pair of the memory foam inserts and put one in the boot. Helped a lot.

Hope this boot helps Alan. I've worn one of them off and on for years. Mostly because of ankle and foot breaks.

Billye

Hey all!
It's so good to read what y'all post and know that you are close by! It's like y'all are family members that I love hearing from!!
I had my infusion yesterday and felt really bad last night but today I'm just buzzing and feeling wiped out. I don't feel as bad as I did last Thurs. after my infusion so I'm happy about that!
I haven't heard back from my Principal about my request to work part time for a while. I have my fingers crossed.

Mel, I hope the new boot helps Alan's foot heal up. That must be so miserable for him!

Sue, Please let us know if you are going to rehab or what's going on with you. What all will they do in rehab for you? How's your leg doing? Will you have access to a computer there??

Thanks Roxie. I'll pass on your good thoughts to Alan. Right now, he went out and got on a bus and he's doing some errands. I think this boot thing allows him to walk better and do more stuff. He does not feel any pressure on the ulcer at all. I wonder why his other doctor never did this for him.

I guess I'll never know.

Billye:

Thanks for explaining the rocker thing. I couldn't understand why it wasn't level. Seems to be working just fine.

And this morning was the second day of the regranex. I took off the bandage (as he got up from sleeping), got all my bandages, gauze stuff, etc. and I did what the doctor said. I made a saline solution and cleaned the wound. It's amazing how nice and pink everything looks. He is no longer bleeding. Now he has bled every day for 18 months, just a drop or two, but every morning when he woke up, there would be blood on his sock (soaked through the bandage). This morning everything looked good. Nice and clean.

So I did the regranex thing, bandaged him up and we went out to Dunkin Donuts. Thank god for Dunkin Donuts. At least I get to go someplace. Haven't had a vacation in 15 years and we rarely go anyplace due to finances and depression. But we are getting out of the doldrums one day at a time.

So hope you are feeling spiffy today!!!

Melody

WoW that's fantastic if that new boot makes Alan more mobile! I hate being stuck at home.....and I have been the last few months. I just didn't have the energy to go anywhere. I even dreaded going to the grocery store!
Gosh, Dunkin Donuts sure sounds good to me! I haven't been able to eat goodies like that since my Gastric Bypass surgery in 2004. :(
Guess I'll go rest for a while.........sure feeling that zapped feeling today!

If I told you what we do at Dunkin Donuts, you'll laugh your head off.

I bring two muffins, and we order Coffee. We go upstairs to a little upstairs room and we have it all to ourselves and we drink our coffee and eat muffins. We stay there one hour (in nice air conditioning) and we just talk and laugh.

Nobody bothers us. Sometimes, Alan will order a toasted cimmanon raisin bagel plain (I will have brought some jelly). It's much cheaper.

Yeah, I know, we could stay home and do this but this is Dunkin Donuts coffee we are talking about and air conditioning (we don't have air conditioning in our house, never had (just the bedroom at night).

So to sit in a cool place, drinking the best coffee that we know (they even throw a free flavor in it (I get caramel), and my muffins. Well, it's a little piece of cool heaven.

Alan even forgets about his PN for a while.

And I don't even notice my burning anymore because since I'm on the methyl b-12 (5000 every morning when I get up), well, I think I'm getting better.

So we take one day at a time.

Believe me, there's a lot of other people in so much more bad shape and I don't mean pain wise. My friend lives around the corner and she lost her son on 911. Then two weeks ago, her nephew killed himself, and this morning she told me that her sister-in-law (this was 10 years ago), well, she was coming home on a train and her husband and 4 kids were driving up to the train to meet the mom.

Well the train is stuck on the tracks and everybody was wondering why. Turned out the car with the dad and 4 kids were struck from behind. I don't have to tell you what happened. A woman lost a husband and 4 kids that day.

So if I have a bad day and I start saying "oh me oh my, why does this hurt, (and I'm not being unfeeling about anybody's PN, I know what Alan has gone through), but when you have such stress in your life (like what these people go through), well, I try and de-stress my surroundings as much as I can. For Alan too. His PN is much better if we laugh and we don't dwell on our son.

Sometimes you have to put yourself first. I've learned that I have to do this.

So, my dear Foxy Roxie (that's your new nickname), you keep on truckin.

Melody

Something else to remember is that laws vary from state to state. What a nurse is allowed or can do in one is not allowed in another. And the different types or brands may require different handling. The bottom line is there is really no standard for some things from one place to another. It can even be simply because of the doctor's preference, pre-mixed versus must-be-mixed forms.

roxie
 

may i know what the IVIG is doing for you? is it for neuropathy pain?
thanks steff

HI Steff!
The IVIG is working for me and I'm tickled pink! I just had my 5th infusion yesterday......I have them at home now......and I've been going 16 hrs with out pain. The 2 days after the infusion has been very hard on me.......as it's working......but it's well worth it to feel better over all!
I have Chronic Axonal Neuropathy....an autoimmune Neuropathy. I've been very lucky that my insurance is covering the whole cost for me. I've been having MANY tests and then the nerve/muscle biopsy so I've covered all my copays and coinsurance costs already this year.
If you are thinking about IVIG I hope it works as well for you!

Ivig/roxie
 

I think i already posted this but i am not sure how to do all this-
how did you get a doc to give you the ivig-does it help with inflamed nerve pain?
i had these years ago when i didnt have the pain, for another reason and i felt just like you wiped out. if i thought they would help my pain i will cry for joy. please let me know if it helps nerve pain and all the info-
if it does thanks
steff