Charcot Foot complication from diabetes

[Ellener]

When I developed type 2 diabetes the doctor told me to go on to injections of insulin immediately to fix it. I said no, let's look to fix my diet and life-style first, and the doctor was very negative, she said no one ever does that. 

Well I did, and my a1c is always below a 6 now. It took about 18 months to get there..

There are about 30 million estimated people with diabetes in America. Charcot Foot Arthropathy affects @ 3% of diabetics.

The symptoms are similar to arthritis, joint infection, circulation and thrombosis issues.

I did not realise my feet were collapsing, but the 'crepitus' sounds from my joints was a clue.

When the pandemic hit I was living in a hopeless dangerous situation sharing a house with a friend, it was a horror movie situation. So I walked all the time.

But being off your feet- 'offloading' is the only way to manage Charcot Foot.

Since then I have been developing memory-foam washable footwear.

And telling anyone who will listen to inform themself and their doctors.

 

 

 

 

 

[Ruby Slippers]

I'm sorry you're dealing with this. Is there any way to turn it around or is it a permanent condition?

[Ellener]

3 hours ago, Ruby Slippers said:

I'm sorry you're dealing with this. Is there any way to turn it around or is it a permanent condition?

This is the basic procedure to reconstruct the foot https://www.podiatrytoday.com/emerging-techniques-improve-outcomes-charcot-reconstruction and it requires being completely off the foot for 2-3 months. Not very practical in my case.

Both my feet are now collapsed.

It takes a considerable investment to 'fix' in terms of cost, time, stress. And no guarantee, the dr did tell me my feet would never look the same or feel the same.

My handling of it is called 'conservative management of Charcot Midfoot collapse' using foam, prosthetics, blood sugar control, wheelchair and rest. The idea is to stabilise the foot for walking safely and not to do further damage. Some doctors use a 'total contact cast' or what's called CROW boot if there's no ulceration.

Unfortunately I kept exercising for some time until the damage was done. Bone damage and ulceration. Now I know that load-bearing exercise on the feet will make things worse. Yoga and weights and a recumbent bike are better.

I also took months of anti-inflammatories and antibiotics due to initial misdiagnosis,soI got tendonitis and a stomach ulcer! 

 

 

[Ruby Slippers]

That sounds like a lot to deal with. I hope you're able to get the support you need. (((hug)))

[stillafool]

I'm so sorry you're dealing with that Ellener.  (((HUGS)))

[Ellener]

Well, as I anticipated, I 'tested the waters' with my friend and told her about my ongoing condition, and suggested using the wheelchair to work, she stopped talking to me and she's hired someone else.

There's a huge prejudice against disabilities, well there are huge prejudices against many things, but I kind-of knew what the outcome would be. 

I'm going to keep it quiet for as long as possible in future, but since most jobs in America require standing long hours for some reason I don't know the exact way forward right now. Self-employment works best.

I'm meeting with another potential opportunity next week, and since my friend has no interest in my issues I don't feel too bad about setting up in competition with her locally. 

 

 

 

[Ruby Slippers]

Sorry that didn't work out. Good for you for trying. I've seen some AMAZING videos on YouTube about people with serious disabilities doing well in their jobs and thriving, so don't give up.

[Ellener]

33 minutes ago, Ruby Slippers said:

Sorry that didn't work out. Good for you for trying. I've seen some AMAZING videos on YouTube about people with serious disabilities doing well in their jobs and thriving, so don't give up.

I think I would have been fine without the pandemic but all the things I can easily do are closed to me right now, plus my son can't find a job following his graduation from university, he's starting to despair.

I'm worth more dead than alive now! And every time I hear another person being uncaring or unkind I'm starting to take it personally. I'm starting to wish I had something terminal, how pathetic is that? All those people who died and wanted to live, 230 000 it's jumped to this week in the US with Covid alone.

Trying not to let anything change or embitter me though, that's what's wrong with the world. I hope I'll still be kind with my last breath and I find people who have it easy yet are filled with hate and spite increasingly weird. What's the point of having it good if it does not bring joy or comfort. To yourself or others.

 

 

[Ruby Slippers]

I apologize if I've come across as uncaring or unkind. I've felt the negative vibe lately getting to me - pandemic, election, mass death, layoffs, crime, division, extremes. I'm very aware how fortunate I am, and my whole life I've envisioned and done a lot to help realize a much better world than this one. I've been generous where I can with time and donations. I see a lot of outrageous generosity around me, which I love to see, and I'm stepping up as much as I can. 

Edited November 1, 2020 by Ruby Slippers

[LivingWaterPlease]

6 hours ago, Ellener said:

I think I would have been fine without the pandemic but all the things I can easily do are closed to me right now, plus my son can't find a job following his graduation from university, he's starting to despair.

I'm worth more dead than alive now! And every time I hear another person being uncaring or unkind I'm starting to take it personally. I'm starting to wish I had something terminal, how pathetic is that? All those people who died and wanted to live, 230 000 it's jumped to this week in the US with Covid alone.

Trying not to let anything change or embitter me though, that's what's wrong with the world. I hope I'll still be kind with my last breath and I find people who have it easy yet are filled with hate and spite increasingly weird. What's the point of having it good if it does not bring joy or comfort. To yourself or others.

 

 

Ellener, there's a reason you're alive! Hang in there, friend! Some of those who seem to have it so good don't really have it that great at all in ways you can't see. I'm not telling you anything you don't know, just reminding you!

I'm so sorry to read about your foot problem and have enjoyed reading Ruby's replies to you on this thread as they seem very caring to me.

I don't know your beliefs about God. I'm a pretty avid believer in Him and He has been awesome to see me through some very rough spots in life and change my despair into faith and hope. 

Maybe look up Elisabeth Elliot's videos on youtube. She waited years to marry the love of her life and a couple  years after they married he was murdered. Her second husband died of cancer. So she has written books and given talks on encouraging people during suffering.  She has a little book called, "A Path Through Suffering" I read last weekend before sending it to a friend who's going through a rough time. Another one of hers is called, "The Path of Loneliness" which I've read that is great, too!

And pray. Whatever you do, know God hears your prayers and they make a difference in what befalls you. That is not to say that He removes trials. But, He does use them as a springboard to bring us into better situations when we pray consistently.

I don't mean to preach at you, dear Ellener! I just want to encourage you!

Edited November 1, 2020 by LivingWaterPlease

[Ellener]

3 hours ago, Ruby Slippers said:

I apologize if I've come across as uncaring or unkind. I've felt the negative vibe lately getting to me - pandemic, election, mass death, layoffs, crime, division, extremes. I'm very aware how fortunate I am, and my whole life I've envisioned and done a lot to help realize a much better world than this one. I've been generous where I can with time and donations. I see a lot of outrageous generosity around me, which I love to see, and I'm stepping up as much as I can. 

You've been very kind and encouraging! 

The poet Robert Frost said it best- 'I had a lover's quarrel with the world' ( it's the epitaph on his grave now ) and I always wanted things to be better than they turned out!

I talked to the leader of my walking group and she said they will help me 'walk' alongside them in the wheelchair, there's one bit of where we walk it's not safe and she said we'll make it safe. We'll see, that's what my friend said 'we'll make it work' with her situation. 

I called the woman who gave me work last year, yes shes hired an able-bodied. 'No hard feelings!'

That's the problem for me right now everything's a 'moving target'! I was hoping to claim unemployment benefits for a few weeks whilst I figured it out, but within two weeks they had run out of funding. 

I'm not sure what it would be like being homeless in a wheelchair....I'd like to think I am strong enough to take on politics and the system, but really I would be better off just going away quietly and dying. 

 

 

[major_merrick]

I hadn't put a name to this condition until today.

One of the women in my community has had Charcot Foot.  It was worse on one side than the other.  For whatever reason, it seems to sneak up on people and leaves them little time to find a solution for it.  While people's experiences vary, I've noticed that for her, the issue seems to stop with the foot rather than progressing up the leg.  She had reconstructive surgery on one side, with reasonable success.  The other side was too far gone.  Rather than use a wheelchair permanently, she opted for amputation.  I recall her being pretty unhappy about it going in, but her outlook after the operation is much better.  She's walking fine.  She hasn't gone back to work, though, since she's retirement age. 

Given your description of the doctors in your first post in the thread, it would be reasonable to assume that they have not given you all the options that might be available to you.  Of course, any issue that has a major impact on function and ability to work has a psychological impact.  That's the toughest part to work through. 

Legally, an employer cannot discriminate in the hiring process.  Where I live and have worked in the past, there are a lot of people who have various physical issues who are able to receive reasonable accommodations in their place of employment.  I've seen people with one leg or two prosthetic legs working in industrial settings with heavy equipment.  Damn near anything is possible these days, especially in a larger company.   What will trip you up with a potential employer is if they sense emotional or psychological weakness.  Willpower, a touch of fierceness, a can-do attitude.  Guts.  With how demoralizing your year has been, I understand that might be a bit difficult to project.  IDK where you'll draw strength from, but there is a source.  Find it.  (Or fake it?  Sometimes a bit of self-deception helps too.) 

Questions to ask:  What is your purpose in life?  Do you have one?  What motivates you?  What are your basic needs, and what are you willing to do in order to meet them?  Is there anything you would enjoy doing that you haven't done yet?  What/who is your single biggest obstacle, outside of your medical condition? 

This probably isn't you, but there's also a way of using the negative side.  I do well in conflict.  I find spite, hatred, and anger to be quite useful.  I find physicality to be cathartic.  One reason I'm still alive is because the world has at times actively wanted me dead - I enjoy being contrary and difficult.  Every day I draw breath and work at my goals is victory.  Can you turn those feelings such as those into fuel for your endeavors?  Or is that method alien and unusable to you? 

 

 

[Ellener]

5 hours ago, major_merrick said:

I hadn't put a name to this condition until today.

One of the women in my community has had Charcot Foot.  It was worse on one side than the other.  For whatever reason, it seems to sneak up on people and leaves them little time to find a solution for it.  While people's experiences vary, I've noticed that for her, the issue seems to stop with the foot rather than progressing up the leg.  She had reconstructive surgery on one side, with reasonable success.  The other side was too far gone.  Rather than use a wheelchair permanently, she opted for amputation.  I recall her being pretty unhappy about it going in, but her outlook after the operation is much better.  She's walking fine.  She hasn't gone back to work, though, since she's retirement age. 

Given your description of the doctors in your first post in the thread, it would be reasonable to assume that they have not given you all the options that might be available to you.  Of course, any issue that has a major impact on function and ability to work has a psychological impact.  That's the toughest part to work through. 

Legally, an employer cannot discriminate in the hiring process.  Where I live and have worked in the past, there are a lot of people who have various physical issues who are able to receive reasonable accommodations in their place of employment.  I've seen people with one leg or two prosthetic legs working in industrial settings with heavy equipment.  Damn near anything is possible these days, especially in a larger company.   What will trip you up with a potential employer is if they sense emotional or psychological weakness.  Willpower, a touch of fierceness, a can-do attitude.  Guts.  With how demoralizing your year has been, I understand that might be a bit difficult to project.  IDK where you'll draw strength from, but there is a source.  Find it.  (Or fake it?  Sometimes a bit of self-deception helps too.) 

Questions to ask:  What is your purpose in life?  Do you have one?  What motivates you?  What are your basic needs, and what are you willing to do in order to meet them?  Is there anything you would enjoy doing that you haven't done yet?  What/who is your single biggest obstacle, outside of your medical condition? 

This probably isn't you, but there's also a way of using the negative side.  I do well in conflict.  I find spite, hatred, and anger to be quite useful.  I find physicality to be cathartic.  One reason I'm still alive is because the world has at times actively wanted me dead - I enjoy being contrary and difficult.  Every day I draw breath and work at my goals is victory.  Can you turn those feelings such as those into fuel for your endeavors?  Or is that method alien and unusable to you? 

 

 

I am glad if my difficulties made you think deeper and care more. You especially should not manipulate your Christian religion, there is only one 'unforgiveable sin' in the Bible.

I've lived a fabulous life and if it's done, it's done. 

Or I'll go on to what's next. 

We avoid suffering, sometimes. No need to pass it on.

[major_merrick]

If you believe that you have accomplished your goals in life, then you are better off than most.  You are free to do as you wish, or add more to the work that you've done.

I've reached a similar phase.  My goal has been to oppose the system, and reproduce to pass on my genes.  I have accomplished this, although there's always more to do if I have the time.  Since I have a heart condition that makes pregnancy/childbirth a potentially fatal undertaking, I know how you feel about the imminent nature of "going on to what's next." 

There are many things in life we can't control.  But we can control our response.  We can act with vigor, determination, cunning, and skill. 

[Ellener]

1 hour ago, major_merrick said:

We can act with vigor, determination, cunning, and skill. 

Right. So far you have recommended to me suicide, prostitution, crime.

I don't think so, especially not in the name of Jesus or faith.

If your pregnancy survival is threatened you will go to the emergency rooms and hospitals you would deny to people like me and demand treatments.

Even listening to your hateful words and ideals I still would not turn you away....I still believe you deserve kindness as everyone does.

 

 

 

 

[major_merrick]

2 hours ago, Ellener said:

If your pregnancy survival is threatened you will go to the emergency rooms and hospitals you would deny to people like me and demand treatment

Incorrect.  I had some significant doubts about my chances back in June, but I did not go to the hospital.  I set my affairs in order, intending to die at home if things happened that way.  (I have not told my husband the full extent of my concerns.)  I've done childbirth at home 3x, without anesthetic or physicians.  I intend to do so again. 

You may dislike my ideals.  Our worldviews and our goals are apparently opposites. I have worked with I've had, in a world that is unkind and unsupportive.  I have succeeded because I did not expect this world to be other than what it is.    Society (and religion to some extent) prefer us to be passive, and compliant.  While it may somewhat work for the whole, I believe it is destructive to the individual. 

I do not wish you ill.  Far from it!  The kindest thing I can do is remind you to work with what resources you have, and make choices that benefit you (which may or may not benefit others.) 

[Ellener]

16 hours ago, major_merrick said:

Incorrect.  I had some significant doubts about my chances back in June, but I did not go to the hospital.  I set my affairs in order, intending to die at home if things happened that way.  (I have not told my husband the full extent of my concerns.)  I've done childbirth at home 3x, without anesthetic or physicians.  I intend to do so again. 

You may dislike my ideals.  Our worldviews and our goals are apparently opposites. I have worked with I've had, in a world that is unkind and unsupportive.  I have succeeded because I did not expect this world to be other than what it is.    Society (and religion to some extent) prefer us to be passive, and compliant.  While it may somewhat work for the whole, I believe it is destructive to the individual. 

I do not wish you ill.  Far from it!  The kindest thing I can do is remind you to work with what resources you have, and make choices that benefit you (which may or may not benefit others.) 

I don't think you will be a good mother from what you wrote to me so far. 

Children need love, unconditionally. 

 

 

[Ellener]

On 11/1/2020 at 5:26 PM, major_merrick said:

You may dislike my ideals.  Our worldviews and our goals are apparently opposites.

I'm sorry. People should probably not be arguing about emotionally charged issues at this difficult time. It's just very stressful and scary.

I'm going to take a day at a time for now, I'm becoming mentally ill. I had a complete meltdown a couple of days ago, I can be horrible sometimes, just blurting stuff out, then I feel ashamed. 

Good luck with your pregnancy.

 

 

 

 

 

 

 

[Ellener]

On 11/1/2020 at 2:41 AM, major_merrick said:

One of the women in my community has had Charcot Foot.  It was worse on one side than the other.  For whatever reason, it seems to sneak up on people and leaves them little time to find a solution for it.  While people's experiences vary, I've noticed that for her, the issue seems to stop with the foot rather than progressing up the leg.  She had reconstructive surgery on one side, with reasonable success.  The other side was too far gone.  Rather than use a wheelchair permanently, she opted for amputation.  I recall her being pretty unhappy about it going in, but her outlook after the operation is much better.  She's walking fine.  She hasn't gone back to work, though, since she's retirement age. 

Given your description of the doctors in your first post in the thread, it would be reasonable to assume that they have not given you all the options that might be available to you.  Of course, any issue that has a major impact on function and ability to work has a psychological impact.  That's the toughest part to work through. 

I opted for 'conservative treatment as it takes 2-3 months in bed to do each reconstruction and the mid-feet didn't fully collapse until this year. I usually take a few weeks off work and stay off my feet and it 'cools down' but earlier this year I was in a brief poor living situation and with lockdown nowhere to go. I spent a lot of the time just walking, then switched to swimming as the arch was collapsing again. Overdid it one lovely day, I was so happy that afternoon, but I got blisters which became ulcers and they take forever to heal. Now no swimming...

Once the ulcers fully heal I can see if orthotic shoes will work. C.R.O.W boots might help. Not a great look. They have to be specially fitted to measure, but some people use supportive training shoes. A lot are pretty expensive. 

It does change life a lot, and it's not been the best time to spend savings on trying to access healthcare with a pandemic. It's just been such a lot of things to juggle and process.

It's taken a while to bring the info but what I wish I'd known all in one appoinment four years ago-

*I would have got a wheelchair for regular use 'offloading' right away and found other people with the disease to get realistic advice and suggestions to preserve feet long as possible. The Charcot is still there now with a bunch of metal so I was a bit concerned 

*More doctors are hearing about it now there is more diabetes but it's often misdiagnosed as arthritis or infection and always ask the doctor about Charcot Foot Arthropathy 

*Never have bare feet ( I miss that ) even walking at home, supportive shoes and socks and a little mirror every day to examine feet

*No load-bearing exercises. Yoga is my regular exercise now on a foam mat. I've put memory foam rugs around as the floor is hard

*No alcohol, or very little, it seems to make feet swell and I usually pity party worse

*There are diabetic tests @$20  in lots of US stores, I do mine every 3 months to keep up with a1c diabetic testing  ( it's the same lab the dr uses for way less ) and always keep in Metformin which I can buy for $10 

One of the leading doctors is Michael Pinzur, he's in Illinois. I've read some more recent articles with his name, the contraptions for the surgery are improving all the time, there's a new one which allows the patient to get out of bed during recovery

There's a book online 'I miss My Shoes, Living with Charcot Foot [Wagoner, Jessie] with a few more ideas

Some days it helps to write things out, some days I just want to forget about everything watching tv with my feet up. I still haven't processed it all. I made little cards to give people who ask me when I don't feel like trying to explain myself!

 

[major_merrick]

Seems like, as with many folks who are going through a rough time, you're having some emotional ups and downs.

At least you've got some kind of direction right now.  Just continue to keep looking for options, and find ways to stay busy even when you are off your feet.  What has gotten to me over the last couple of years is how much I have been stuck at home due to pregnancy. The result is worth it, but doesn't leave a lot of option open.  So I spend a lot of time curled up in my den asleep.  Do you find that spending more time sleeping helps or hinders your recovery process?

[Ellener]

8 hours ago, major_merrick said:

Do you find that spending more time sleeping helps or hinders your recovery process?

Helps my feet, but walking/exercise helps my anxiety! 

I think that's what happens a lot in life though- we are managing multiple situations and the difficulty is prioritising...my meltdown this week was when there were too many financial pressures and I was trying to work it out, and I did that bridge-burning thing of outbursting on two big drains on my energy- not very mature at 54, and I got drunk to do it and my son came over and went crazy with me 'mum you can't drink!' and poured the alcohol away and sat with me overnight until I was calm and sober.

I'm trying to channel my emotions better this week, though I kind of know why I did what I did subconsciouly too. Just not very proud of the meltdown.

My son said 'this is not a good example for me!' but we had some very deep talks all night, and he's 24 so I told him 'you're getting a bit old to be blaming me for your mistakes!'

Being off my feet as usual they start to 'heal themselves' to an extent, I look like a right fool I'm sure doing these leg exercises in bed, but only the dog can see.

I'm isolated too, which can be crazy-making over time I did ask my son to help with that more for a few days. I don't really want to get too involved with my neighbours or church for now, or I'll just get more emotional. There aren't many people in my life right now who understand me, or they try to 'fix' me, plus everyone's dealing with their own problems.

Do you like reading? I go through phases of it, light-hearted junk. And writing, I should really find a way to make a living with that.

I'm watching Dr Quinn Medicine Woman with one ear as I type, I look for the anachronisms and it certainly was one hell of a well-dressed town!

 

[major_merrick]

@Ellener Alcohol is definitely not helpful.  I had to pretty much give up drinking since I seem to get pregnant every time I turn around.  For me, alcohol amplifies mood.  If you start drinking while mad, you get madder.  If you start drinking while happy, you have a merry time.  Alcohol also seems to amplify the effects of whatever medicines you're on.

But, meltdowns happen.  Part of being female, I think.  My last meltdown ended with me attached to my husband almost constantly, even sitting in his lap for meals.  Gotta have a place you can fall, no matter how fierce you are.  That's been my place to have meltdowns for 20 yrs, which is why I eventually settled on getting married.  Whatever place you end up retreating to becomes "home base" after a while.  Got a place like that?  If not, any chance of finding one?

[gamon]

On 10/10/2020 at 3:12 AM, Ellener said:

When I developed type 2 diabetes the doctor told me to go on to injections of insulin immediately to fix it. I said no, let's look to fix my diet and life-style first, and the doctor was very negative, she said no one ever does that. 

 

Your doctor is (mostly) right). I see type 2 diabetes patients all day long. They're invariably morbidly obese and have done little or nothing to lose the weight which is what caused the diabetes to get so bad in the first place. No matter what any of them say, they continue to make poor lifestyle choices, they eat too much, and they eat the wrong things and they consider exercise to be a walk around the block and their bodies continue to deteriorate and they point the finger at all the hateful people around them who refuse to understand while being in complete denial of the position they have placed themselves in.

[Miss Spider]

Hugs to you, Ellener. Try to stay off your feet as much as you can and look into a brace. Wishing for the best for you

[Ellener]

1 hour ago, gamon said:

 

Your doctor is (mostly) right). I see type 2 diabetes patients all day long. They're invariably morbidly obese and have done little or nothing to lose the weight which is what caused the diabetes to get so bad in the first place. No matter what any of them say, they continue to make poor lifestyle choices, they eat too much, and they eat the wrong things and they consider exercise to be a walk around the block and their bodies continue to deteriorate and they point the finger at all the hateful people around them who refuse to understand while being in complete denial of the position they have placed themselves in.

I lost my extra weight and I used to exercise even when overweight and took up a holistic lifestyle. Which to me means minimal 'western'-medicine too. But yes, it has to be that person's choice. Lots of what we call medicine is here because people want to not give up the lifestyle they love. 'Learn to love something else' one man said to me. 

My gp doctor never mentioned Charcot Foot Arthropathy though, and it was not one of the risks mentioned on the diabetic-advice-internet at the time.

It was a psychiatrist I was seeing for anxiety disorder who first told me to check for it; he was a bit suprised when I took my shoes off in his office to show him: 'I'm not a foot doctor!' 

Everyone who has communicated with me more than two words anywhere in recent times knows it now!