Update on Alan's foot!!
 

He just called me from Beth Israel (I actually let him go on an appointment without me, lol). I wrote everything down for him but he did just fine).

Doctor took out the stitches from the Gastrocnemius thing. Healing nicely.

The doctor debrided a little bit of the foot ulcer. Alan said to him "my god, my ulcer never looked this good in 2 years". The doctor then told him "wear the boot for 3 more weeks, you do not need the wheelchair any more (thank god for that because I'm starting to look like Hercules, lol).

So he can walk anywhere he wants to. He's healing nicely. He actually only will walk to the physical therapist and to Dunkin Donuts in the morning. I know he's chomping at the bit to go to the gym but he'll be told when he can do this. His neuropathy only goes away when he goes to his gym for a little while. But he shall wait until he is told that he can go.

Oh, the doctor also said 'you need special shoes, molded to your feet". His doctor is going to check with his insurance. They cost $500.

Oh my god. But we'll prevail. We always do!!!

And the doctor did tell him. "Alan there is no guarantee that these shoes will prevent the ulcer from re-ocurring, but it's your best shot".

So we shall wait and see.

We always wait and see. But no complaints here. He's still ahead of the game to where he was before he started to see Dr. Theirl. He couldn't even stand up straight before he saw Dr. Theirl.

So he's in a better place than 5 years ago. We have to be grateful for the little things in life.

Strenght
 

Melody,

I so admire your strenght in all situations. I hope to be there some day soon. I still fall apart over everything.

I enjoy reading your messages.

Eileen

That's great....
 

the ulcer is probably doing well, because he was not walking on it.

Keep an eye on it while he starts to put weight on it. (in other words don't
get too elated yet). ;)

I hope all continues to go well. :)

I am glad things are going better. I like your outlook too.That is so cute about him going to the apt by himself. He must be learning from you. How are you doing though?

Mel
 

Great now tell him,it's nice he doesn't have to use his wheeelchair.. But
if he over does it like Bob has done for more then 5 years,you will put him
in a wheelchair in a nursing home,and visit him 1st a month with your
boyfriend Vinny.Ha
I had to pay those 400 dollars hand made rubber compression hose,I thought
no,how am I going to do this,but they work with you..Bob has one shoe
with a big brace the insurance pays for that but not the other shoe.Very
expensive but must be done,but men well at our age we know about men.
i'm going to pm you today or next day need a favor tht might help others,
Hugs and glad Alan is doing well,Bob wants to know if he stop crossing
his fingers..Hugs to all smooches Mel Sue

I believe the kind of shoes he will need, will be the kind where he puts his feet in some kind of molding foamy stuff, and they make a mold of his entire foot. And they will build him a pair of shoes in such a way that it will oft-load his ulcer.

We don't really go anywhere except to Dunkin and to the physical therapist (and I take care of him at home), so he really will be able to keep off that foot.

I have to ask him if he still has to sleep with the boot on. I bet he forgot to ask the doctor that question.

As to my up-beat mood, believe me, I do have my moments.

But they only happen when my son phones, or emails me. Then my whole body falls apart, my feet burn, and my whole being gets all whacked out. That's what toxicity does to me. I have had to learn to DISTANCE myself from this. I CAN do it, but sometimes, memories come flooding back, and thoughts over take you, and I will walk over to Alan and I have this look on my face and I mention my son, and Alan knows what to say.

He reminds me what our son has done, (only takes one minute of reminding), and I get my head cleared and I go "okay, I'm back to normal".

It's like button being switched on. Sometimes the button has to be reminded.

Every few months or so, Alan has to remind me. Then I can switch my mind to where it needs to be switched.

I sincerely believe that co-dependant people need to do this every so often. Our very future depends on it.

We need to remind ourselves that WE MATTER TOO!!!

So I just do it one day at a time. There is always someone way worse off than we are. Some of us have more physical pain, others have more emotional pain.

You have to figure out coping strategies and just do the best that you can do. I find that humor works best for me and Alan. This is not the case for everybody.

But believe me, when I get in that horrible place inside my head and I remember my son's behavior and treatment of us, well, it's not a pretty place to be in.

That's why you guys are so important. I listen, I learn and I do whatever I can do to pay it forward.

I mean, isn't that why we are put on this earth in the first place???

I am having a go around with the insurance company on my orthotics, and I won't go into cost, but it is in the 4 digit range.

I am glad Alan is feeling better, and have him think twice before getting on a treadmill. Walking is fine, but best done on a flat surface at ones own pace.

Yes that is how they do with one of Bob's,he get's them put in stuff
and he's 6ft.2 and all legs and thin,and walks now if he remember's
with a walker or cane. Mostly he run's out the door,some female
has fixed him dinner.

Bob's good with me when i'm down in the dumps,no wonder the women
like him..Dr. john's been in Africa helping out,goes there almost every
year..The gentleman who lives in the house behind us asked me
out to dinner..His wife passed away from cancer 2 yrs. ago,his
4 kids and family''s live near by,I feel yukky but said yes,he's sweet
as was she..Nice lookng and he get's along with Bob,ha his name
is Bob. Oh dear here I go again,well I've known him for many yrs.

Insurance companies can be a pain ,why most people get tired of fighting
these people have not deal with C,poor insurance co. get them C.

Mel i'm a person who believes in humor get's me through the pain,and
I would ratter go out laughing if and when I go..Until then going out
to dinner. Hugs to all Sue

After 5 phone calls, I did get thru, to some one who seemed to have a modicum of intelligence in policy interpretation, and I have to pay a reasonable portion. I agree, it is reasonable. Altho their CEO gets a salary of 150 million, so, it is more reasonable for HIM to pay my reasonable fee, but he apparently doesn't think that is reasonable.

I haven't paid for devices yet, but it is a new year, so, this time I may have to pay the 'reasonable' fee, to which I do not object. Several hundred dollars is probably reasonable given the total bill. I am privileged to have insurance these days, as so many folks go without. Perhaps that CEO should pay some of their fees, just to be a nice guy. (like that will ever happen)

This is a dumb issue, because NOT getting the devices makes one more prone to bone breaks, osteoporosis, surgeries, blah, blah, blah. Which costs the system more money.

Well, I have to go wash my sheets AGAIN...we have nothing but mud, with a few mounds of snow outside, and my dogs seem to think my bed is a door mat. I do not know why they run upstairs to wipe their feet!! I know, the answer to this dilemma is easy, keep the bedroom door shut!

Right now I feel like a door mat. I either have my flu like illness back, or inhaled chlorine at the pool. I am hideously allergic to chlorine. I leave the pool looking like I have pink eye, (it goes away) and I use good goggles, ear plugs, nose plugs, and a swim cap. I look like a monster from the deep, plus I appear rude or deaf if some one speaks to me, as if I don't see them speaking, I do not hear a thing. I still itch from my cardiac electrodes too. Thing has been off for two weeks.

I shower after swimming and clean out my eyes. It is just chlorine....or my flu like illness is hanging around, but I feel icky and have a cough now. I am going to bed early. 'The sun will come up tomorrow....'

I don't know about any one else, but I love daylight savings time but this year it has kicked my behind to switch.

Melody and Alan
 

I am so glad that Alan came thru this with such good flying colors! It must be a big relief to see light at the end of what's been a very long tunnel.
As for orthotics? Well, you do what you have to do and go from there...
Any surgery to the bottom of the foot is considered VERY invasive....When a person wears shoes, it's the ideal environment for infections, and something that Alan with his CIDP can't play roulette with [such as going to the gym, as much as he'd like] Such surgery takes a VERY long time to heal. I do wish it were different?
At least, saying goodbye to the wheelchair will be nice, won't it?
Here's to Alan keeping on 'healing' and not 'wheeling'! -j

Shiney Sue, you have the most boyfriends of anyone I know! And I so appreciate your attitude about humor and laughter. I am still struggling with depression, but at least I am in the struggle... No giving up!

Cyclelops, so sorry you are feeling rotten. I hope it is temporary.

And Mel, I hope things keep going well for Alan. Won't it be wonderful if this is the last of his problems with that sorry old foot ulcer???

Thanks to all of you who responded.

I do have a question that is not neuropathy related but is auto-immune related.

Alan has had psoriasis for many many years. On his elbows, behind his ears (these have gone away), but the elbows and ankle, (the right foot which is the foot where he had his operation). In the past, whenever he has had IVIG, the psoriasis would flare up.

Or when he has had surgery (like the stent, or the tailor bunion), the psoriasis would flare up. We've tried all the creams, etc. (his insurance won't cover the oral meds, and I don't think he would go that route anyway).

Actually, it comes and goes. BUT!!! on his right ankle, this is where he has this HUGE psoriasis patch (don't know any other way to describe it). It's a good 5 inch patch full of scales). He would scratch it and the scales would come off. Been doing this for years. Usually at night I'd remind him, and he would rub on sime Vitamin C and E lotion. (he's used the psoriasis cremes and stuff but they don't work).

The Vitamin A D AND E (it looks like vaseline) stuff just moisturizes his ankles and dissolves the scales.

WELL!!! (and sorry if this is graphic but I have to put this question out there), today, at Beth Israel, the orthopedic surgeon unwrapped his leg (it's been about 3 weeks since his surgery).

He came home and said "my incision is healing nicely". So I didn't look at the leg. Well, just now I walked into the living room and on the little table by him were this bunch of stuff that I thought were orange peels. I said "what on earth is that". and he said "my psoriasis". I said "your what??" and he said "I've been wrapped up for 3 weeks, do you know how much scaling I've accumulated?, you know that after a surgery, I always have a psoriasis flare-up!!!" I could not believe what he took off of his ankle.

I took a look and said 'holy moly" It looks exactly like a snake that shed his skin. He has very thin skin anyway.

There was the BIG 5 inch thing that was red and raw looking, and two other patches. Of course I quickly cleaned up everything, got out the Vitamin A D and E ointment and went to town putting it all over his leg. Not by his incision, but where he has had the patches. On his elbows too.

It just melts the scales and it either comes back or smooths away. Like behind his ears. Most of that is gone. I have no idea why this happens to him.

His toes are psoriatic (that's what his podiatrist has said). Nothing Alan can do about that. He just takes care of them as best he can.

But the thing on his leg. I never knew that being wrapped up for 3 weeks, well, that I would see ALL THE STUFF on the table. It was like flake flake flakes, all over the place. And all over my couch. I mean ALL over. Got it all cleaned up. He had an IVIG treatment on the 7th.

It's like his skin is shedding. By tomorrow, the raw stuff on the ankle will have calmed down. This has always happened. Sometimes, one of the psoriasis cremes we have used, well, it will work. But that ankle patch, well, it just is what it is. Long long time now. He doesn't seem to care about it. I believe he is just used to having psoriasis.

Do any of you have experience with the scales accumulating after a surgery?.Or after an IVIG treatment? He wasn't able to unwrap his leg for 3 weeks, and these scales really accumulated. I really never expected to see such accumulation like I did.

I know that it's just a bunch of cells but Holy Cow!!!

Gee Melody?
 

My guess is that it's time to start a 'relationship' with a good dermatologist?

Maybe they would take a biopsy of the 'flakes' and see what the source is...IF a source is to be found.

I do know I see my own Derm. yearly and get the bulk of the prescription salves and lotions or potions I need to keep me well 'ICK' free until my next yearly visit.

Worth a try at least? - good lluck - j

He's been to countless dermatologists. He's had this condition for YEARS. Nothing they did helped. It was explained to me that his immune system is out of whack and this is excess growth of cells that accumulate and flake off. Behind the ears have disappeared so that's a good thing. He gets some between his eyes, so we gently clean that and I put the soothing balm there.

I forgot to mention however what happened two days ago. He woke up with something on his face. I said "what the heck is that??" I brought him a mirror and he said "oh, that's psoriasis". It was on his face, next to his nose but underneath is eye. I looked at it and I believe that's exactly what it was. I gently cleaned off the scale, lesion, whatever it was and I had an idea.

I said to myself. "I'm italian, we use extra virgin olive oil to moisturize our skin". My skin is great so I said: "well nothing else is working, why not do this".

I found a good facial recipe that said "warm a bit of extra virgin olive oil between the hands and gently apply to affected areas".

I did just this. gave him a whole facial. Did his scalp (he's bald), so it was easy. I then did his whole face, behind his ears, everything.

It was gone the very next day. Smooth as silk. It's still gone.

So just now, I put some extra virgin olive oil on my hands, warmed it, and applied to to Alan's patches.

Hey, if there's a miracle happening tomorrow, you know I'll post it on this thread.

Can't hurt. Might even moisturize and help with the redness.

Will update.

Melody

I have very fair skin,very fair but always very pretty,only short time
in sun.. Now that i'm on meds my skin is very dry, now That Derm.
lied to me about that vaseline,busniness last year,(I'm allergic to it}
Look for petroleum products it's in alot of over the counter and alot
of the stuff they give you,,,This group of Drs. didn't want to be wrong
three layers from knee to ankle my skin came off,it drain,it bled,the ER
medical student looked his eyes poped out,he said I can't admit you but
you will be..He shook his head and said,did you tell them your are allergic
to that,yes well why did they say,nobody alleric to that..Well
I would try the Virgin Olive Oil,my mom warmed that stuff up and put
it everywhere.Mothers in my Italian neighbor used it for earackes,I hope
it helps him..

Susan humor helps many things,but i've suffered from depression bad
went to a great Psycholgist,someone I could talk to it helped me.
Yes for a old bat who falls all over and falls down ,not to mention
tonight we went were I could only eat wonton soup or barf on him.
I was hoping he would say go ahead eat,if you barf on me that's fine
he didn't so I didn't. Ha Really it wouldn't hurt to talk about how many
have gone through depression.. Or going through it,and I'm glad your
feeling better. Now I have many men friends because when I'm not sitting
on it I have a great behind..

Mel let's hope it works do you use plastic gloves,you can buy in a big
box or wash hands and clean nails..I use the gloves now some people
can use latex some can't..Just a suggestion,you know my uncle had that
and sat in the sun when he could it helped,just put on sun lotion now
adays..I'll meditate and have good thoughts it starts to help. Hugs
to you and Allen and everyone..Sue










0

Hi Sue and All:

Well, I just woke up. It's 8:30 a.m. and I went over to check his leg. He's sleeping. The really impressive thing is that there are no more new scales. That has never happened.

Last night at approximately 10:30 p.m. I did the extra virgin olive oil thing. For the first time.

Previously, I would put the A D & E ointment, which would moisturize, but 10 hours later, there would be those nasty scales again.

BUT THIS TIME WAS DIFFERENT. I can only tell you what I just observed. The 5 inch thing was just red. It's like new skin. It's not raw, it's not flaming. It just like there's new skin. There are no scales. The three other patches on the same leg are exactly the same. No new scales. This is a first.

So what I'm going to do when he gets up, and after he washes and gets dressed, is.....I'll warm up some extra virgin olive oil between my hands (I don't use plastic gloves for this, just my clean hands). I rub the oil between my hands and gently put the oil on his legs. I even put it on the other leg yesterday because his skin is so dry. I'll do this for a while.

If we don't see any new scales, and the skin just heals, well, now, we might be on to something.

I'm am definitely crossing fingers toes, and anything else I can cross.

You have no idea the scales that came off of this guy yesterday. I never saw such a thing in all my life.

I hope the olive oil does the trick. Old Italian recipes, well somethings THERE REALLY IS SOMETHING TO THEM!!!

Will update.

Melody

I have and it is a little diff then from surgery but scales under my lids and was prescribed a steriod antibiotic cream. Will see. The oil I have never heard of. I heard of putting sugar on your skin I think.
I agree laughter is the best medicine.
Sue that is so funny about the behind. I always tell my mom don't wiggle your wiggle wagon too much. She likes the young men. Oy!
For people in pain and with many issues everyone here has such a wonderful spirit.

I never heard of putting sugar on the skin. I know that in biblical times, they did something called sugar waxing to exfoliate the skin.

Alan doesn't need anymore exfoliating believe me.

Just did the oil thing again. He's got the boot back on. We shall see later on tonight, if the skin is still smooth. Boy he certainly does have some immune stuff going haywire, that's for sure.

But his ears and his face is smooth, so that's good thing.

Hope your eye stuff works for you. I read about what you are going through.

Thanks Mel. Yea the sugar I saw I think on tv and putting powder jello the red stuff on your lips makes them look rosey. Not into those make your own stuff.Have a good day

Well this sounds good,just don't put so much oil on him,you get frisky again
hug him and he hit's the ceiling..Back to the Neuro again,I can't only laugh
when the Neuro asks Sir how did this happen..:eek::eek:Well my wife Mel.
Ha..Hugs to all Sue

Sue, I know you must have more than a good behind to attract all these men! It must be that sense of humor, too. Now what are you going to do with them???? It makes me tired to think about it! Now that tells you that I am getting old.....

Daniella, I have been reading about your eye problem with great regret for you. It's just not fair. We should all be only allowed one medical problem each. I'd sure like to give some of mine away! Anyway, I am having positive, healing thoughts for your eyes. Take care of yourself.

Susan i'm tired anyway,so I know the one I will marry if we ever decide
we want to do that .We are both 61 and kissed at the water fauet in
first grade.HaThen we rode the same school bus and held hands
all the way through High School,went different ways,until we became e-mail
trip buddies,he lives in Mi. But there are 2 more in Mi. and one in Texas.
honest it's my cute behind..:):) Sue
PS. How's Alan Mel,get him off the ceiling ??

Thanks Dakota. I am sorry for all you go through too. Its like when it rains it poors and I am in a hurricane. Hope you feel better too.
Sue maybe I know your man friend in MI. I never knew you were 61 gosh that is like the new 40. Your 20 inside like Mel.

Hi all.

How's everyone doing tonight.

I may be 20 in my head but I'm singing right now in my 60 year old body. I got my Shark Steam Mop today. For Free, go over to Social Chat and read all about it. It's the best darn thing I ever got.

Even made a video on it.

Oh, by the way, Alan is doing good. His psoriasis, well the scales haven't begun to form yet. I think the olive oil helped to moisturize his skin.

I made him sit down and let me rub olive oil all over his face, head and between his eyebrows. He thinks I have lost my mind.

But I'm telling you, tomorrow morning when he gets up, his skin will be smooth like a baby.

lol

Hi to All:

I'm documenting what is happening to Alan's psoriasis on the side of his right ankle. It has been there for over 12 years. It used to be scaly and lizardlike in appearance. As I indicated previously, we used EVERY OINTMENT and prescription creme known to man, and nothing stopped the scales. And just so anyone starts thinking "that does not look like Psoriasis", he's been to many dermos and they all diagnosed his patches as psoriasis. This is just one big patch.

A few days ago, I started the Vitamin E. I pierced the capsules and rubbed the stuff on his (what do I call this thing?), lesion??

Also on the other patches that he has.

Well, amazingly two things happened. The first was that three days ago, it was bright red, like a burn. It is no longer bright red. And the scales have stopped forming.

Yesterday I spoke to his physical therapist who looked at it and shrugged and said 'psoriasis is what it is. you can try and then you find whatever works. Some people never find what works, and others find that what you are doing (using the Vitamin E), works wonders, so keep doing what you are doing".

So I thought I would take a photo and put it in this thread.

It's Tuesday, March 18. Here's what his foot looks like as of today.

http://i272.photobucket.com/albums/j...alansankle.jpg

It's much lighter in appearance, and the really odd thing is that when I rub the vitamin E into the lesion, the lesion disappears and you can actually see the clear skin underneath. It's like an eraser. For a magic second or two, everything disappears. Then it comes back.

Only right now, it's two shades lighter than it was two or three days ago..

I do this twice a day. Once in the a.m. and before he goes to bed.

So we shall see next week, I'll post an updated photo.

Let's see if we can lighten this thing or get rid of it altogether. I mean, he's had it almost for forever. I'd like to see him get rid of it.

OH, I use the E on his elbows and and whevever he has the patches. It got rid of them between the eyebrows, but the elbows are taking longer.

We shall see.

Oh my. You are such a great wife to be so on top of his issues. I hope you get nice anniversery gifts. Not to be so personnal but what has caused so many of his issues?Has it been most of his life?

Honey, I don't get ANY anniversary gifts. Alan (during the first 20 years of our marriage) had entitlement issues. I think he even has Aspergers.

But he's a much more different fellow now. He appreciates me and what I do for him. Until a gift giving occasion comes up. He is absolutely not comfortable on these occasions. But I don't let him off the hook. He is learning, slowly, HOW TO BE A GIVER AND NOT ALWAYS A TAKER.

Now as to his health issues. Well, he was fine till 17 years ago when he got his first taste of neuropathy. Been a slow very slow way to his diagnosis.

The psoriasis developed about 12 to 15 years ago. (I just asked him and he said: "AAgh, who the heck can remember, must be 12 to 15 years).

We went everywhere and tried it all. I think his immune system just got overwhelmed, or whatever happes to immune systems when they are compromised).

So we just treat the symptoms. Hopefully the Vitamin E will help a bit.

Will update.

You take care

what happened with the olive oil?

Hi. oh yes, I forgot about mentioning the Olive Oil.

I think it worked but the Vitamin E works better.

I can use the both of them, I guess. But I want to see how just using Vitamin E works. It's amazing in that when I rub it in, it's like all the red goes away immediately. It's as if there's no lesion there. Then in one second flat, it comes back.

But no scales. So at least this is a start.

You know, I might do an experiment here.

On his elbows, I'll use the Olive oil, and on the ankle I'll use the Vitamin E.

Worth a shot.

I am sorry but it sounds like you both have a close relationship. People show it in different ways. I always wonder even on this board when people have so many dx if some is from one thing causing another or is i found looking for other things. Mel you should write a home remedy book. Make a blog.

That's the second time someone mentioned that I should write a book, and I think that is so funny because, compared to many people on these boards, I know absolutely nothing.

But it's funny you mentioned this because once I was in CVS and I happened to be talking about diabetes with a person behind the counter and another patron was listening to me and she walked up to me and said: "How the hel* do you know about all this stuff and I just laughed and said 'I don't know, I just know a lot of shi* and we all burst out laughing and she said:

"THAT'S A GREAT TITLE FOR A BOOK".

I JUST KNOW A LOT OF SHI*

I never forgot that conversation.

And yeah, Alan and I are close but it took 28 years. Believe me, this man needs to be married. His sister told him I should get the medal of honor for how I take care of him.

I'm glad SOMEONE appreciates me!!!! lol

I'm *so* glad to hear he's making forward progress, Mel! :) As you said: We have to be grateful for the little things in life.