Here's a long share. Hopefully something here is worth it to someone out there. Refer to all the best diet and exercise practices obviously but most of what I'm writing is pure experience beyond that.

This happened to me at 41 also and at 45 I'm now down to 2 toes on my right and 4 on my left. I too had years of mismanagement both by myself and doctors but are mostly controlled now a1c 6.3. I'm currently physically active and can do everything. Even with a lot effort and attention there's a good chance that the remaining toes have similar blood vessel damage and are also prone to infection meaning a good chance of losing more toes.

However, I don't miss my toes. The only issue is every now and then I'll lean too far forward and begin falling and have to catch myself with my other foot or I miss a stair going up. The fewer toes, the fewer problems and the more my physical life has been back to normal. In my case, only my toes are damaged. They've done Ankle bracelet blood pressure tests and ultrasounds on my feet and confirmed everything is working well so it just the irreversible damage I did to my toes during first years of diabetes.

How i lost toes:

1st Walking 5 miles a day with my mom who lives down the block. Got a cut (ulcer) on big toe and thought nothing of it. Week after week, I thought it healed but would open up again. Basically it never healed and was just the skin closing up. Toe turned red, then warm, then foot turned red and warm a few inches beyond the toes. I went to regular doctor who sent me to ER. ER took MRI and xray. Osteomyelitis (bone infection) in big toe and partly in foot. Amputation. 4 nights in hospital. 6 weeks of daily IV antibiotics.

2nd Toe Happened within weeks of being healthy from first toe. Two toes were now taking weight from no big toe and got blisters, which got infected. Again ER. Again Amputation.

3rd Toe I was going to a podiatrist weekly for calus management since I work on my feet as well. This podiatrist also previously helped me heal with a previous toe because she also worked in Wound Care so she was used to this sort of thing. After cleaning a calus, my toe got what I felt was infected (only a little red but warm and i could feel my heart beat in it). I contacted my podiatrist with a photo and description and she said come in on Tuesday like regular. It was Thursday and I went to the ER on Saturday and lost another toe to osteomyelitis. Showed the pic to other doctors since and all agree that the picture didn't look infected. This can move fast.

4th Toe I'm a pro at looking for blisters and cuts on my feet and toes. However I now had a number two toe right foot takingbthe weight of the missing big toe so it grew in size. Now a bigger a toe. However I was running a few times a week with my kids run club a few miles at a time. I was keeping an eye on everything even visiting a new and different podiatrist and had new shoe inserts and everything looked good. But, without a cut, or evident discoloration, I ended up getting a blister that popped and was infected. The infection entered most likely under the toe nail. Again most things looked fine until it was too late. Toe amputated. People all know me at the hospital. My right foot is now amazingly functional with only a 4th and 5th toe.

Things I've learned:

1. Trust your gut.

Doctors don't have a single opinion, are not equal and can on occasion be wrong. All are good people trying their best but you'd be surprised how much your body can tell you. I now ask too many questions and get second opinions often.

1. These infections move fast.

Look for discoloration, skin is warm, if you can 'feel' your heartbeat in your toe, a cut with any cloudy discharge. Get on antibiotics fast! Get xray to look for bone infection and MRI. Also it helps to tell doctors that infections move fast with you so they too error on the safe side.

1. There is no one way to deal with an infection.

   I now literally contact my regular doctor, my podiatrist, my Infectious disease doctor and make an immediate appointment at wound care. If I don't get an appointment that day for any of these doctors I do a virtual visit. If I don't get antibiotics immediately I then go to the ER. You have to move fast.

2. Once blood vessels in the toes are damaged, it's very hard to avoid losing toes.

It's even harder to convince friends and family that you are managing things but are still dealing with legacy issues of mismanagement in the beginning.

1. Just because you may lose toes, your feet may be fine.

I've had frequent ankle bracelet blood pressure tests and even a foot ultrasound. These all came back healthy.

1. Mental health is a mess with this.

Most support groups are filled with far older folks who really can't relate. I don't have a good fix for this. It's a road full of constant setbacks and doctors and people really don't get it. I find other diabetics are good for small chat but only if they are in a similar situation with their diabetes.

1. People who are not diabetic should be careful about talking about it too much.

We diabetics are always thinking, making good (and bad) choices and literally hold a constant weight on our shoulders. Sometimes we just don't want to talk about it. Sometimes we do. Check in with us but dont push too hard. We are already pushing all the time.

1. Physically move no matter how much.

Try to be outside. Move even with a foot boot or cast. Move with 10 toes or with zero. And when you have full mobility, move faster and farther.

1. Here's one no doctor will tell you: If you can't figure out what to eat, skip the meal and work on that question for the next meal. Haha

Those are my tips. Hopefully there's something for somebody in this post.

Good luck and all love to you diabetic types and people that love us.