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