My third anniversary of my Weg diagnosis is today.

[drz]

It is now four years since I left the Nursing Home and things are still "holding". I feel my delusions of adequacy have some times been replaced by somewhat more realistic and hopeful optimism that I might again be able to do some things again that i have not done since I got Wegs. I took my first solo fun trip to East Coast to visit my grandsons and their family and am looking at some other short fun trips like maybe a Road Scholar low activity session if I find one close enough.

[drz]

It is now four years since I left the Nursing Home and things are still "holding". I feel my delusions of adequacy have some times been replaced by somewhat more realistic and hopeful optimism that I might again be able to do some things again that i have not done since I got Wegs. I took my first solo fun trip to East Coast to visit my grandsons and their family and am looking at some other short fun trips like maybe a Road Scholar low activity session if I find one close enough.

It is now five years since I left the Nursing Home after a three month stay for rehab work. I am very grateful and appreciative about having these five years. I was the only person on my unit of 40 people who was able to return to a more independent living situation. I live in a Senior Housing complex in the light assisted living section. I have only spent a few days in patient in the past five years and generally been in a drug induced remission most of the time.

I still help support several doctors at several different medical facilities with out patient appointments and log several thousand miles of travel each year for my many medical appointments as most are out of town and require a drive from one to three hours. This week Monday was a Holiday but I had medical appointments on three of the other four days and also spent a couple hours on the phone for insurance, supplies, appointments related to my health care.

So this weekend I will scale back my fun activities to rest up a bit and try relax. Other wise I tend to be rather busy when not napping or resting doing fun things I enjoy like attending concerts, walking in the woods or parks, playing cards or visiting with friends.

So generally life is pretty good now and certainly better than it was five or six years ago.

[annekat]

Good report, drz, on the five year mark with Wegs. I'm glad to hear things have remained on a pretty even keel for awhile and that you are enjoying various activities. I hope the winter weather does NOT bring you sinus infections this year. Maybe now is the time to cut back on some indoor activities with people, so as not to be exposed to things. Maybe on nice days just get out on walks by yourself and enjoy the crisp fall weather.

I can hardly believe how the time has gone, as it is almost 4.5 years since my dx and 7 years since I started having problems that were no doubt Wegs doing its thing.

[drz]

It is six years ago that I was in a downward spiral in a hospital in Fargo. I had been admitted at end of March with suspected pneumonia, and possible broken wrist. Neither was correct and the Wegs was moving fast. I soon lost my hearing and my lungs were filling with blood and my kidneys failing. Lucky for me my doctors got a consult with Mayo and sent my blood samples down there and got a report that it was 99% certain I had active Wegs. More details are in my celebrate thread.

So time for my annual update. This has been a challenging year so far because of other health issues. They probably are related to treatment for Wegs and probably side effects of Weg's treatment and years of diabetes.

In December I started having some pain in my abdomen. It was first suspected to be gas pain, then a possible urinary infection. but it kept evolving until it was finally diagnosed as hernia in groin area. The surgeon found it was a double hernia and during surgery at end of January found the colon was also trapped in the hernia on one side. No wonder it hurt like heck.

Two weeks after the hernia repair surgery I developed a sharp pain in my ankle when walking. The walk in clinic did an x-ray and said it wasn't broke and sent me to the podiatrist. He and radiologist agreed it was not broken. He thought it might be a synovitis and injected some cortisone into the ankle to try help the inflammation heal up. It didn't help much and seemed to get worse with more swelling. He had assured me it was OK to walk on it even though it hurt to do so. On my next visit to him I asked about Physical Therapy and compression stockings to try reduce the swelling and soreness so he ordered those for me. The swelling continued to get worse although the pain will walking seemed less. I remembered in the past I had a broken foot and PT made the ankle worse so I asked for a MRI on the next visit.

I knew something was up when the MRI tech asked me if I was going to see the podiatrist afterward and advised me not to walk on it. I relayed what the podiatrist had told me that walking was OK and he didn't think the MRI would tell us much about why my foot hurt. The tech asked me to sit down while he called the podiatrist. Next thing I am in wheelchair en route to his office and then learn I have a broken ankle bone and am put in a cam boot that is like a star wars boot fastened with Velcro. I was told I had to wear this any time I was out of bed or a chair so I assumed it was a walking brace. It was going to be an inconvenience to wear it for the next three months since I had to take it off to drive anywhere but if it was going to help it heal and get rid of the pain I was glad they finally found a cause for my pain and swelling. I was also advised to get a knee scooter to help me get around.

Two days later on April Fools day I learn that it was no ambulation or weight bearing of any kind. So I went to get a pair of crutches thinking I could use that to help get around my apartment or in and out of my car since the scooter was not real portable. The scooter did fit in the back of my SUV but how can I load it and unload it without any walking. So no trips anywhere without a helper to do that for me.

I found out through experience that I no longer have the strength or endurance needed to walk on crutches and using the scooter is also exhausting and uncomfortable so I will only be going rather short distances on it for the next few months.Still having delusions of adequacy at times. The muscles involved in using it are different than those used in walking so they are very sore now. I will be building up lots of leg strength in my legs and arm strength through use of the scooter and transferring my weight to chairs and the scooter. But that increased strength should make it use easier too.

During this time I also had some ER trips for a vision problem which turned out to be scar tissue coming back over a cataract surgery and that needed to be removed again with laser treatment. This greatly improved my vision and it was 20/20 for the first time since I was five years old.

I also saw a hand surgeon recently about possible repeated surgery for my Dupytrens Contractures which is another side effect of diabetes. I had surgery on it 7 or 8 years ago but it is a chronic condition that comes back. No urgency about it so it will wait awhile.

Otherwise I think my Weg stuff is doing OK. No recent sinus infections or bronchitis. My kidney function remains stable and lungs seem OK too. My last ANCA scores were back in normal range and they are usually a good indicator for me. I will have to postpone my annual Weg checkup at Mayo for a few months due to my lack of mobility.

I was on the generic Fosomax for five years. One of listed risks for it is breaking the thigh bone. I don't know if my break in my ankle is similar or just due to brittle bones like brittle teeth I have noticed over the past few years. The break was called a cold fracture or occult fracture which just means it does not show up initially on x-rays. I could not see it either on the X-ray. These kind of breaks often or maybe usually happen without any stress or injury. The concern is that I may be at risk for further such breaks. The meds I take to maintain remission from Wegs and control diabetes may increase the risk of such breaks.

My last A1C level was also better and think the hernia repair help with this by reducing my pain level. So overall things are going pretty good for me except for some minor problems with mobility and needing another surgery on my hands some time.

So I will enjoy my life now and celebrate my six years of life after my Weg diagnosis. Especially since another further reminder of life's irony is that a former work colleague who was 11 years younger and most likely in better health overall had a hernia operation a few days after mine and he died two days later from complications of a blood clot to his heart.

A review of these threads where I posted today will also contains names and post of several former members of this forum who are no longer able to be here with us to celebrate our lives. So be glad if you can still read this. It is great to be alive so have a good day.

[Pete]

drz, you've had quite the time of it. Hope things get better really soon!!

[Dirty Don]

You're a tough one DRz...you inspire others with your knowledge & attitude...hang in there as always!

[Debbie C]

Happy 6th Anniversary drz I will send you some bubble wrap to help with any future breaks. Hope your foot heals quickly, try using Epsom salts in one of those foot spas ,that might help with the swelling and healing. So sad about your former co-worker, it just goes to show you that we are never promised tomorrow so enjoy today. Glad to here every thing else is fine and good luck on the hand surgery. Take care