Replies to This Discussion

Permalink Reply by Doug on February 21, 2008 at 5:20am

Barbara - Guess I was "lucky" and had okay insurance. 4 years ago I was in a rehab facility after the amp - for 6 weeks. Before being released I received a temporary prosthesis and a few months after that a permanent one - this January I received a replacement - my insurance allows a new prosthesis every 3 years - but cover only about $2500. My old leg's locking mechanism would release which meant the leg falling off at random times - like crossing the street - getting out of the car - walking down my office hallway - embarrassing and dangerous. The new leg's locking mechanism supposedly won't do that. I have also had some problems with pressure points and have developed open sores - last fall one became infected and I had to miss a week of work - couldn't wear the leg. In the last few weeks I have regained a great deal of comfort - the only thing I do is really load the stump (I hate that word) with lotion which cuts way back on rubbing irritation - seems to work although it is messy.

Hey - biking is easy!!! It is the only way I get my exercise. Are you a BK? If so you should be able to ride. Only one suggestion, though. You will need a device on the pedal you use for your amped leg - it will keep your foot from sliding of the pedal - I think you will find that device very necessary - any good bike dealer has that type of device - used by a lot of racers.

When were you amputated? I assume it was from an infection as mine was. Before all of that mess I did a lot of hiking, rock climbing, played softball and so on - I was active - that has been curtailed a bit but there are ways to compensate. Like biking...

I really do wish, though, that comfort was a bit better - it keeps me from walking much.

Fill me in - talk about your Type 1, too. Now I've got to go write to Linda...

Doug

Permalink Reply by Barbara M on February 21, 2008 at 8:04pm

Hey Doug,
My amputation was July 7, 2005. I was ready for it though. I think it was embedded in my brain by nurses and doctors since I was diagnosed. Don't get me wrong, there were some great nurses and doctors throughout the years.

It wasn't an infection. The bottom of my foot gangreened and it was too late by the time I got to another hospital. It was a three hospital trip on the fourth of July weekend. This story is a book! I'll never forget it.

The last hospital was the best! They were really good to me. The surgeon called in other specialist to consider saving it but it was way too late.

All I know is I was really mad when medical pros kept asking me why I waited so long. Then I became more angry that I had to repeat the "50 chapters" in My Amputation: It's All My Fault by Barbara The Bad Diabetic.

I had started making notes on a book I planned to write. I still have the notes. I picked the title Bad Diabetic. Like bad dog! I planned on a sarcastic comics type style of all my experiences. I still think about it but I really don't want it to be too sarcastic because a lot of people do not find me funny at times. I really try to be funny but the sarcasm sometimes makes people run.

I do have plans to add positive messages like Don't do what I did....

The biking part: Is it a toe in for the pedal? I tried to get on the exercise bike once and did find the prosthesis to hinder me in bending the knee. I guess they have to wait until I have a full heal before they can make any adjustments to the back of it. They know I want to bike.

We tried to get something figured out for the foot slipping. Someone mentioned a velcro strap around the foot and pedal. Someone else offered duct tape. Man, I do not want the bile attached to me if I fall. I want to be able to jump off as I always did. Not much jumping can be done if you're going head first though. Momentum keeps you from changing that direction. :D

Permalink Reply by Doug on February 22, 2008 at 3:45am

Barbara - a day off to get some things done and it's snowing - so here I am. Actually I have an afternoon appt with a Diabetic Educator - my previous DE was a T-1 - she was 45 - since she was 10 - had a pancreas transplant 2 years ago which allowed her system to produce insulin - was working fine but something recently happened and she has disappeared from the hospital staff - I'll find out today.

Yes - about that device for biking - it is a "modified" toe-in contraption that fits on the pedal. I cut off all but just the front portion of it. When I first tried biking my fake foot would constantly slip off the pedal - I'm sure you can picture the pain of that slipping that it causes a guy - this thing just prevents that from happening. Works fine and my fake foot will just simply slip out if I fall. And I have fallen - in front of a group of grammar school kids - embarrassing. But a few of them were helpful.

There is a certain awkwardness, even today, with starting from a dead stop on a bike. You have to make certain preparations to get that first start of momentum - pedal has to be in the right place for that first downward push - you need to make sure you are in the right gear so the first pedal is easy and so on. Once started, you have to visually check to make sure the fake foot is on the pedal right because, obviously, there is no feeling sense of that. But it is easy - and good exercise - and I live in the country suburbs so I am able to be with nature a bit.

One biking problem, though, is when I am going up hill I can't stand on the pedals to maintain my speed - just not the right muscles on the amped leg - so all pedaling is done sitting. If you are able to get rid of those pressure point sores - they are such a pain and really make any activity uncomfortable - then you will be good to go. I have a good quality bike - a hybrid from mountain and street riding. So I really understand you dilemma there. I think I said in my previous email, true comfort (okay, not quite complete comfort) has come in the last few weeks - prior to that I had a lot of sores and sensitve spots since late October - went throught the process of getting a new leg and then all of the adjustments - but I have finally gotten to the amp version of stump nirvana - more or less. You've just got to keep hanging in there...

I have been lucky with my D - during my 30 years or so I have had minimal issues until the infection which kept me out of work for a year - in and out of hospitals - 7 or 8 procedures - and, at one point, my daughter was told I wouldn't see the morning. But here I am - everything considered I feel good. The important thing for me - what really drove me - was my desire to regain my independence - I didn't want my daughter to change her life to be my nursemaid and I wanted to get myself back to a semblance of normalcy. I have done that - perseverence - I returned to my job 3 years ago - I drive without any car modifications (my right foot is the amped) - and I can be moderately active. It just takes that drive and that personal sense of wanting to return to what was before.

Okay - rambling away - sorry about all of that! Just one last note for now - keep working on that writing idea - I have a ton of notes with the same intention - to write some sort of novel that would involve telling an understandable (to non Ds - they are all so ignorant of what it's all about) tale of the D life.

More later...

Permalink Reply by Barbara M on February 26, 2008 at 4:48pm

Doug,

I have a couple of questions. What is stump nirvana? I'm clueless. What do you mean by locking mechanism?

My first permanent leg (and the temporary) have a silicon sleeve that holds on to the thigh. I don't use a lotion. The prosthesis company gave me a silicon sock to pull up over the stump to the thigh. Between the "sock" and the "sleeve" it won't fall off unless it has to be cleaned with rubbing alcohol. If I don't clean it, the "sock" starts to roll down. Just like a sock when it loses it's elasticity.

Ok a third question, I know that's more than a couple. How did your appointment go?

Permalink Reply by Ann on April 6, 2009 at 1:35pm

Hi Barbara!

My sister is not ready for a prosthesis yet so I am wondering what you wore. I have bought her capris. In the in between time what did you wear outside? Ex. Out to Dr.'s appt. etc.

How do I help her with clothing ideas? Any websites?

Also did you have a body image issue? When did you feel good about yourself?

Thanks, Ann

Permalink Reply by Barbara M on April 6, 2009 at 5:33pm

Hi Ann!
Before I received a prosthesis, I wore stretch type leggings. I folded up the pant leg neatly to cover the stump. The leggings come in all sizes and cuts, boot, straight, tapered, etc.. I wore these in different colors to match my office blouses, sweaters, or blazers. I felt ok with what I had on. I used to wear skirts and heels, and it was quite the adjustment for me! People around me got used to me coming in on crutches and sitting in the wheel chair. My husband also bought me baggy shorts for the summer, they came in handy too when I was outside in my yard.

The stretchy leggings are available at almost any store and they come in many colors. I purchased many from my local Wal Mart. Dark colors come in handy when I garden. They are so handy when you have to visit the doctor too. All you have to do is roll up the stretchy material. They don't bind and cut off circulation either. They also work out when you have to put the prosthesis on.

I also wear zippered designer jeans as long as they have the stretch material, when I wear the prosthetic. The only issue I have in wearing the jeans is that I have to take the shoe off and feed the prosthetic through the pant leg. I wear jeans when I'm going out but not to the doctor's office. I've been told that it doesn't look like I lost my leg. Unfortunately, I still use my cane for that just in case moment.

My surgeon really liked the fancy sweat pants that I wore to his office. I joked with him about starting a clothing line for people like me. He became serious and said not to dwell on that because he expected to see me walking. I still think it could help with people's self esteem in feeling good about themselves.

To answer your last question: Yes, I had a terrible body image issue. I pretty much became anti social. No one would talk to me (I think many felt unsure of what to say or they felt uncomfortable), the ones that did talk to me probably wished they didn't. I did appreciate strangers coming up to me and asking what happened, they actually wanted to know. I tried very hard not to be mad at people for ignoring me. Once I received my prosthetic the anti social thing seems to have passed somewhat.

There were good days and bad days about body image issues. I think there still are bad days. I guess you have to learn not to feel sorry for yourself and not make a big deal about losing a leg. It takes time to get through the emotions and usually sitting with people who have gone through it helps. Even qualified counselors. The key is to not stay sad for very long. Try to get back and do the things you used to because you can. It's not perfect, but you survive.

I still have body image issues but they don't last as long as they used to. I make sure I prepare myself for negative people because they are out there. One has to learn to toughen up more and focus on good things. Everything takes time.

I'm sorry I wrote a book. Thank you for asking me the questions. It's great to talk to someone about all of this! Let me know if you need anything else. If I spot something new in clothing, I'll let you know. Please tell your sister I'm here too. I'd love to know more about her and I think it's great you're giving her so much support!

Laughter and pets help too. Pets make you move around more because you have to take care of them. I wonder if someone's thought of training dogs to walk with you while you're on crutches? Cats are easier to manage but help is needed with changing litter boxes, until you have a prosthetic anyway.

Let me know if there's anything else. Barbara

Permalink Reply by Ann on April 6, 2009 at 9:11pm

Hi Barbara!

Thank you for all the information. You really have been kind and helpful.
I just spotted your response. It is very late for me, I'm going to bed,
I am taking my twin sister to the wound care specialist this Tues. I would like to speak with you in detail. It has been the worst year of my life seeing my sister go thru so much. I am heartbroken.She is very courageous. You must be too!
Goodnight!

Ann

Permalink Reply by Barbara M on April 7, 2009 at 6:07am

Ann,
It's no problem! Anything I can offer suggestions on, I'm here. Yes, your sister is courageous. I wish her every success in remaining strong, to hang on despite this disease, and to above all, keep her head up and laugh. It's so important to laugh. Tudiabetes is a great tool for all of us!
Barbara

Permalink Reply by Ann on April 8, 2009 at 6:50am

Hi Barbara!

My sister's appointment went well. Her wound care specialist said everything is looking good.
Almost healed. That means getting fitted for a prosthesis sometime soon. What is that process like?

Enjoy your day.

Permalink Reply by Barbara M on April 8, 2009 at 8:12am

I am very happy to hear that your sister's appointment went well! My first prosthetic appointment consisted of taking measurements and having a cast type material formed of the stump. This was done in order to make the area of the prosthesis to fit onto the stump. It was very exciting to get to that appointment. Unfortunately, I had to wait almost two years for mine due to insurance issues. My leg did not do well in the healing process due to the rehabilitation hospital I was staying at after the amputation. I picked up some sort of hospital infection there. My leg has healed and remains open because of this. It's been three years and it looks like it is trying to heal.

My prosthesis is a specially made device to bypass the area that is still healing. So my experience may be more complicated than your sister's. I believe that her first prosthetic may be a temporary prosthesis. I think that after six months or more she may be receiving a new one. It depends on her situation. As time goes on, she should keep in mind the fact that she may require new prosthetics due to changes in her walking process, etc... I have heard that a prosthesis can create sore spots, and I have experienced this as well.

Last note for now is, when she plans on wearing different shoes, she should ask whoever is making the prosthesis for advice on how to make adjustments for different shoes. I have been told to ad sole cushions to one shoe to make up for dragging the leg. There's more to these adjustments and they should be discussed with whomever is making the device. I'll tell you also, that once you start to learn how to walk with the prosthesis, it'll feel real strange. It was kind of scary for me but the rehabilitation program nurses are great with encouragement.

I hope your sister can experience excitement when she receives it, despite the feeling of what she had to go through. I'm very happy for her!!!!!

Permalink Reply by Ann on April 8, 2009 at 8:27am

Hi Barbara!

You are filled with information!
That is what our life experiences are for. I will share this information with Mary Ann.

If this is inappropriate you need not answer. Why do you still have an open wound?
I only ask just in case I can share some medical knowledge I have learned with my sister's experience. There were a variety of treatments to heal an open wound/ulcer.
This must make you very prone to infections. I am very familiar with that and treatment for it. I have a feeling you could be healed.

Permalink Reply by Barbara M on April 9, 2009 at 6:36am

I'm not sure as to the exact reason for why it is still open. I do see a physician for this and he seems to be comfortable with the healing stage it is at. I did consider hyperbaric treatment but after my mother tried it, I became reluctant. She lost part of her hearing.

I know it started out as an infection after the amputation procedure. It wasn't properly taken care of by hospital staff at the rehabilitation center I was sent to. It wasn't infected after I left the medical center after amputation. I did have to go back to the surgeon after I left the rehab center. He was so upset that this happened. He had to reopen the stitching and which made for an ugly healing process. I did use a wound vac and that helped tremendously. I also visited a plastic surgeon who used applegraf skin to grow new skin tissue. The skin grew and the wound healed but a new opening appeared on the shin bone under the knee. This is not closing. I personally thing something is going on in from the inside. It continues to drain clearly. and the wound is tiny, like a pin hole, but appears to run deep.

It has not become infected since after the amputation. Thank God! Cultures have been taken and the doctors are just baffled. My sugars run under control but I experience many lows now. I have an Endocrinologist thats working with me on that. We're trying taking the Lantus at 5 pm instead of 9 pm. The lows are not as frequent now.

As for this wound, it baffles me too. I wonder if my prosthetic is preventing the spot from healing. Maybe it's a pressure thing bruising deep? I am scheduled to receive a new prosthesis soon.

I forgot to tell you, please let Mary Ann know that if she experiences phantom pains, tell her to tap on her stump. I was told to try this by a rehab counselor. I really don't experience phantom pains regularly but his advice really worked for me!

If you have some suggestions on the wound healing, I'd be grateful to hear about them. By the way, did Mary Ann experience severe cramping in her legs? I had them most of my life and wonder how doctors treat this symptom now. My thoughts on the leg cramps, charlie horses, was that it is circulatory. I was tested for a vitamin deficiency but that did not pan out. Those were very painful, I wish them on no one! I'm glad I don't get them any more!!!!! Talk to you later. Barbara,