View Full Version : My third anniversary of my Weg diagnosis is today.
Last year close to my second anniversary of diagnosis I posted about my diagnostic experience and improvement. Now one year year later things are much the same. Right now I am feeling good and back in a drug induced remission again. I had two infections this winter which cause the Wegs to flare two times during the holidays from before Thanksgiving through a couple weeks after New Years but since then have felt pretty good again.
I see a lot of doctors frequently at seven different locations to monitor my health and they say I am doing better than last year. I feel very fortunate and am very happy about the degree of recovery I had from my worst times, but i am still hoping for further improvement in the next year.
Some times when I am feeling pretty good I get delusions of adequacy and try to do some task that used to be very easy for me and then end up having to spend a day in bed resting up again. I am getting much better though at rationing my "spoons" and taking naps PRN before I over do things and crash. I am now much better at accepting my new "normal" and find it mostly enjoyable despite the various limitations from the Weg damage and need to have a medical appointment or two almost every week. This usually means a day trip out of town (over 9000 miles last year) But I know that unless I am diligent in trying to maintain what health I have left, I will have little joy in Muddville.
Have a good day unless you have made other plans! :biggrin1:
Alysia
04-10-2013, 02:03 AM
Hi drz
strange to say "happy anniversary", but this is it :)
it seems that things are getting better from year to year :thumbup:
it is good and good to hear about it.
it is a kind of "relationship" with the weg.
I call it "my wegener", sometimes with anger, sometimes with kind of "intimacy", like we are 2, me and my weg.
Dirty Don
04-10-2013, 02:28 AM
I get delusions of adequacy...Have a good day unless you have made other plans! :biggrin1:
First of all, congrats drz...another year down! Yea! And feeling better too, well, same is better!! LOL! Annnnd, you ARE sooooooo funny! Methinks your expression of self is improving vastly...those lines are soooooo mean, ironic, and TRUE!!! Love it! Made me laugh...I like laughing! Good therapy, y'know! The best as always to you!
Hi drz,
Happy anniversary, I think. Given some of the options, it probably beats not having an anniversary. ;-)
Delusions of adequacy -- I love it. Describes my approach to strenuous work also. At least I'm retired, so I'm having a lesser sense of urgency about yard work. If it doesn't get done today, it'll still be there tomorrow. Hey, the maņana mentality is useful after all!!!
annekat
04-10-2013, 07:56 AM
Congrats, drz, on being able to say you are doing better on your third anniversary than you were on your second. AND, we have pretty much a shared anniversary, as my dx was right around this time 2 years ago... could even be the same date, but I'd have to find an old calendar to know for sure. I, too, can say I'm doing better than a year ago and also have experienced the "delusions of adequacy", along with some actual adequacy!
mishb
04-10-2013, 09:57 AM
Congrats, drz, on being able to say you are doing better on your third anniversary than you were on your second. AND, we have pretty much a shared anniversary, as my dx was right around this time 2 years ago... could even be the same date, but I'd have to find an old calendar to know for sure. I, too, can say I'm doing better than a year ago and also have experienced the "delusions of adequacy", along with some actual adequacy!
Today is the same date, two years ago, that I started my journey with WG medication.
I was, however, diagnosed in Aug 2010 but had to wait on specialist appointments and biopsy before any action was taken.........we don't do anything in a hurry over here
Well done drz and I'm glad things are getting better each year.
.............How about you make your next anniversary, a med free remission
Psyborg
04-10-2013, 12:10 PM
"happy" anniversary DRZ :) I hope the coming year is a healthy one for you :)
chrisTIn@
04-10-2013, 03:47 PM
Delusions of adequacy -- I love it.
Me too. Brilliant! :biggrin1:
... Hey, the maņana mentality is useful after all!!!
Also very true, and funny! :thumbsup:
Congratulations to you, drz!
And many happy returns! :hug3:
HopeinTN
04-11-2013, 02:11 AM
Yippee! Here's to many more years of better health!
Great news, I wishing you all the best every day, all day long! I also am coming up on 3yrs of my major flare and lung surgery. I know what a scary eposode you had when you first got sick and you have came a long way baby! A big congrats is in order!:hug2:
marylz
04-11-2013, 11:01 AM
Wishing you continued good health in this and coming years!:hug1:
Last year close to my second anniversary of diagnosis I posted about my diagnostic experience and improvement. Now one year year later things are much the same. Right now I am feeling good and back in a drug induced remission again. I had two infections this winter which cause the Wegs to flare two times during the holidays from before Thanksgiving through a couple weeks after New Years but since then have felt pretty good again.
I see a lot of doctors frequently at seven different locations to monitor my health and they say I am doing better than last year. I feel very fortunate and am very happy about the degree of recovery I had from my worst times, but i am still hoping for further improvement in the next year.
Some times when I am feeling pretty good I get delusions of adequacy and try to do some task that used to be very easy for me and then end up having to spend a day in bed resting up again. I am getting much better though at rationing my "spoons" and taking naps PRN before I over do things and crash. I am now much better at accepting my new "normal" and find it mostly enjoyable despite the various limitations from the Weg damage and need to have a medical appointment or two almost every week. This usually means a day trip out of town (over 9000 miles last year) But I know that unless I am diligent in trying to maintain what health I have left, I will have little joy in Muddville.
Have a good day unless you have made other plans! :biggrin1:
I made it to year four. Most things are about the same. More dental problems and skin issues and neuropathy continues to progress but kidney function and lung function has remained stable. I still am viewed as being in a drug induced remission with no ANCA activity. I was able to cut down on my medical travel by 30% which seems a major progress despite having some new issues. I got through last winter without any ER visits or sinus infections which was great feeling but did need antibiotics for a tooth infection and root canal.
I reread the notes my daughter wrote about my care four years. Four years ago I had just come out of the drug induced coma and intubation and starting the long rehab process. It is amazing to me when I read about my limitations back then that I have recovered to to the degree that i have. I was very uncertain four years ago if I would ever be able to do many of the things I now can do again. It can take a long time to regain strength and some functions.
I have made great progress in the last year in reducing my delusions of adequacy but still have some daydreams of things that might be, which may or may not be unrealistic fantasies.
Again best wishes for a good day unless you have other plans.:thumbsup:
Alysia
04-27-2014, 03:41 AM
wow drz. what a beautiful progress. thanks for sharing. you are giving us hope that things can be better even if it doesn't seem so while being during tough times..... and also the acceptenace of what we can and what we can't is so important. :thumbup:
annekat
04-27-2014, 12:31 PM
Thanks for sharing, drz. I'm glad you've made such progress, and it's always good to hear your sensible and thoughtful point of view on your own case as well as others'. My anniversary of dx and treatment was 3 years ago April 12th, so you are almost exactly a year ahead of me.
windchime
04-27-2014, 11:17 PM
I'm happy that you have made it four years and made such great strides in your overall health. Thanks for sharing your story.
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.
keegan55
09-09-2014, 04:46 AM
Happy anniversary.It is good u r doing well.
Wegetarian
09-10-2014, 07:10 PM
Great to hear you are feeling good :) Maybe you should plan a trip or something fun for your fifth anniversary? And I don't mean a medical trip :D
It seems that the progress can be quite slow at times, but when looking a few years back its actually a lot better than one would have noticed. At least I felt the only sudden improvements were when I could drop the high pred doses to smaller once, otherwise I would only notice if I thought that two months ago I wouldn't have had the energy to do these activities.
Drz,
I am so happy for the progress you have made, congratulations on 4yrs. That is amazing that you can do solo trips now and are making plans to do more. You have certainly come so far in the last year. I'm wishing you all the best for your continued positive progression in your journey.:thumbup:
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
09-14-2015, 12:27 AM
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.
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.
drz, you've had quite the time of it. Hope things get better really soon!!
Dirty Don
04-05-2016, 03:24 AM
You're a tough one DRz...you inspire others with your knowledge & attitude...hang in there as always!
Debbie C
04-05-2016, 07:41 AM
Happy 6th Anniversary drz :hug3: 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
annekat
04-05-2016, 09:25 AM
drz, as I've said before, we were dx'ed at exactly the same time of year but you are a year ahead of me. It's good to read your yearly anniversary reports. Despite some setbacks and the loss of a former co-worker, etc., your attitude remains great and is an inspiration to us all. I hope there is improvement with your various issues, and that you manage to get out and enjoy the spring and summer a bit.
renidrag
04-05-2016, 10:34 AM
You have been an inspiration to me over the years. Best to you.
Dale
Wait, wait, wait.... Didn't all the internet literature say you weren't supposed to make it this far? Believe I read that and everything on the internet is true. :-)
In an odd, twisted sort of way, I offer you congratulations! Assuming, of course, that we would congratulate each other on the anniversary of getting this terrible disease.
I saw Bob Psyborg and ChirsTin post a message. We haven't seen you guys in a while. Great to see you again!
Alysia
04-06-2016, 03:52 AM
wow. drz. you are so amazing with all the issues you are dealing with, all at once, and at the same time having such great fighting spirit, courage and strength of body and soul. I hope its right to say in English as we say in Hebrew: I salute you.
Wait, wait, wait.... Didn't all the internet literature say you weren't supposed to make it this far? Believe I read that and everything on the internet is true. :-)
In an odd, twisted sort of way, I offer you congratulations! Assuming, of course, that we would congratulate each other on the anniversary of getting this terrible disease.
I saw Bob Psyborg and ChirsTin post a message. We haven't seen you guys in a while. Great to see you again!
I posted a reply to this message but it disappeared so will try again. We were diagnosed with Wegs on same day and joined the forum in the same year. We are lucky to still be here while several of our active members from our early years are gone.
I also agree it nice to hear from some members that have not been posting much here lately. i did some checking and many of the people that posted comments to my first post in this thread have not been active here for two or three years in some cases. Most are doing well living a good life and a few are gone from this earth and some might to be too sick to post or feel no need to make any further comments at this time.
But as long as we keep having new challenges and health issues, we have something to discuss and share. Keep in touch and good luck with your upcoming medical procedures. Like I said in another post no one wants an award for most challenging case or difficult situation but you sure are a contender unfortunately and a great role model of how to enjoy one's life despite serious medical issues. Keep on keeping on VW. Best wishes.
Psyborg
04-06-2016, 12:12 PM
I posted a reply to this message but it disappeared so will try again. We were diagnosed with Wegs on same day and joined the forum in the same year. We are lucky to still be here while several of our active members from our early years are gone.
I also agree it nice to hear from some members that have not been posting much here lately. i did some checking and many of the people that posted comments to my first post in this thread have not been active here for two or three years in some cases. Most are doing well living a good life and a few are gone from this earth and some might to be too sick to post or feel no need to make any further comments at this time.
But as long as we keep having new challenges and health issues, we have something to discuss and share. Keep in touch and good luck with your upcoming medical procedures. Like I said in another post no one wants an award for most challenging case or difficult situation but you sure are a contender unfortunately and a great role model of how to enjoy one's life despite serious medical issues. Keep on keeping on VW. Best wishes.
Hey DRZ congrats on 6 years. I hit it around the middle of June. Diagnosis-wise. It's weird...it doesn't seem like that long, and at the same time feels like it's been forever.
Not as active as I was. To be honest I've had some depression around some of the people we've lost that has made me a little more detached. I really appreciate those of you that are able to not detach from this.
Drz,
Congratulations, on your the six year anniversary of this gift that keeps on giving. I'm so sorry that you are having to go thru the other health problems, caused from this crappy disease. You do have a great attitude about it all, keep up your good spirit. It has been 6yrs that I got sick also, but wasn't dx'd until in Sept 2010. I'm a bit like Bob, I'm not on here much as it sometimes overwhelms me, with the loss of some of our dear friends. I wish you all the best with trying to find a way of moving around, without further damaging anything else. Take care.
Alias
04-12-2016, 08:36 AM
Having just passed my second anniversary last month, I understand the ups and downs, but it sounds like overall the picture is reasonably bright for you. Here's to continued enjoyment of the good moments and ongoing improvement. The constant vigilance required by "the new normal" is wearing... but obviously worth it!
MikeG-2012
04-13-2016, 09:21 AM
4 years for me yesterday. Wow, what a ride!
Drz,
Congratulations, on your the six year anniversary of this gift that keeps on giving. I'm so sorry that you are having to go thru the other health problems, caused from this crappy disease. You do have a great attitude about it all, keep up your good spirit. It has been 6yrs that I got sick also, but wasn't dx'd until in Sept 2010. I'm a bit like Bob, I'm not on here much as it sometimes overwhelms me, with the loss of some of our dear friends. I wish you all the best with trying to find a way of moving around, without further damaging anything else. Take care.
The good news is I found out my ankle bone is sort of healing or trying to heal and my not so very knowledgeable doctor, the one who didn't think it was broken and told me to keep walking on it for 7 weeks, thinks it should heal up enough to walk on again in another 10-20 weeks. I have used the Exogen bone stimulator to try speed up healing over six weeks which I hope is helping. I suspect it might have healed faster if the break had been correctly diagnosed back in February so I wouldn't have walked on the broken ankle for seven weeks. But it is a relief or encouraging thought to think I should be able to walk again some time this year.
I am going to see a orthopedic specialist this week to get another opinion on my ankle and to also get some advice about other joints being stressed and strained by using the knee scooter. The knee in my good leg, both elbows, and my wrists are sore. I have carpal tunnel in one wrist. I don't want to need more surgery as soon, or even before, I heal from the broken ankle enough to resume walking again.
Being rather housebound for another 3-4 months presents a little challenge to maintaining a good attitude and happy spirits as it shoots the whole summer and requires a major adjustment in planned activities. It feels like deja vu in that six years ago I spent the summer in a nursing home learning to walk again and building up enough strength and self care care skills to move to a more independent living situation which is where i still am at present. In the nursing home I could not go any where with out assistance but did enjoy the outings when they were available.
I have been trying to adapt to my downsized life style caused by my broken ankle by getting another knee scooter with larger wheels that is safer to use outside but they only come in a three wheel model which seems considerably less stable to me than the four wheel models. They are also larger so not convenient to use in any smaller place where frequent turning or backing up is required. One can't turn around or back up easily from a bathroom or any small room so its usage does pose a considerable challenge. It does handle the small bumps and cracks better but doesn't feel stable enough to use safely for any long outdoor use.
The hands free crutches I ordered to try increase my mobility also yield a similar reaction of being too unsafe for me so I doubt either of these mobility aids will greatly improve my mobility. Even so i will try harder to get out for more than just my many medical appointments as I get tired of being house bound. Our activity director has been helpful in scheduling lot of activities in house and away for us and the bus has a lift so it can take people in wheel chairs so a scooter or walker is no problem either.
I have been re reading some of these old threads , like what i learned from having Wegs, as the wisdom contained in the posts here help remind me to celebrate what i can still do today. Every day above ground is a good day, although some days seem better than others.
Alysia
06-23-2016, 04:47 PM
Thanks for sharing drz. I am always inspired from your strength, wisdom & amazing attitude. I am glad things are getting better. Hang in there.
I keep you in my prayers with Faith & love ♡
Jeanette
06-23-2016, 07:54 PM
Great news, hope you keep getting better.
It will be 4 years on the 26 July since my son who was 14 at the time
Was finally diagnosed, he was just 13 when he first became ill.
He's also doing well:thumbsup:
All the best
Jeanette x
My broken ankle has healed enough that i can start walking on it again while wearing orthotic shoes. I started walking with the plastic air cast early this month and didn't think it would be so hard to walk with shoes again but it was challenging the first day since the leg seemed a foot too short and kept collapsing on me after not walking on it in shoes for 100 plus days. But it felt great to be able to park my scooter. I only have to use it now when barefoot or without shoes. I hope to resume driving again real soon too which will end my housebound status.
I hope my strained knee and elbows will also recover OK. My carpal tunnel in my wrists seemed to abate when I got a better wrist brace to wear and a taller knee scooter that put less strain on them.
Learning to walk this time seems much easier than six years ago when i spent half the year in hospitals and nursing homes working on my rehab. I feel very lucky that despite the other health challenges of hernia surgery and broken ankle that my Wegs still remains in drug induced remission and hope it continues to stay that way for a long time.
I tapered off my generic Protonix (proton inhibitor) to generic Zantac (ranitidine) and hope that works for me. I think the years of Protonix might have contributed to my broken ankle. I was also trying to decrease one blood pressure meds as it seemed too low at times but then it got too high along with increased pulse rate. so this will take a lot more monitoring and adjusting to find optimum level for me.
The challenges of managing life with Wegs and type one diabetes together are usually on going due to the complexity of the diseases and side effects of the meds needed for maintenance. But life is good and i am still here to enjoy it. Like virginia satir said:
"Life is not the way it is supposed to be. It is what it is. The way you cope with it is what makes the difference."
So enjoy it the best you can.
Alysia
08-14-2016, 03:33 AM
I am so happy that you are recovering, drz. Thanks for sharing and for always giving us inspiration & strength.
annekat
08-14-2016, 03:40 AM
Good update, drz. Wanted to let you know that ranitadine seems to work for me, on an as-needed basis. Keep up the good recovery.
I am so happy to hear that you are recovering quite nicely. I'm sure that it feels good to be able to get out more. It is sometimes almost a full time job managing all the complications, let alone the disease its self. It sounds like you do a really good job at it, keep up the good work. Take care of yourself and all the best to you!
mishb
08-14-2016, 05:25 PM
You are awesome drz :thumbsup:
So many different issues over the years and you always have time to update us, and always make it sound like it's not so bad.
I'm sure it's way worse than you portray.
I'm so glad that things are working out and that you are recovering nicely
MikeG-2012
08-16-2016, 03:02 AM
My broken ankle has healed enough that i can start walking on it again while wearing orthotic shoes. I started walking with the plastic air cast early this month and didn't think it would be so hard to walk with shoes again but it was challenging the first day since the leg seemed a foot too short and kept collapsing on me after not walking on it in shoes for 100 plus days. But it felt great to be able to park my scooter. I only have to use it now when barefoot or without shoes. I hope to resume driving again real soon too which will end my housebound status.
Glad you are doing better. I shed my boot last Thursday, and I know how you feel. I didn't know how to walk right after only 6 weeks in the plastic walking boot. Luckily, I was able to take off my boot to drive, and was pretty lucky to be able to go to work every day.
Hope you continue to improve!!!
chrisTIn@
08-23-2016, 10:38 AM
My broken ankle has healed enough that i can start walking on it again...
it felt great to be able to park my scooter....
I feel very lucky....my Wegs still remains in drug induced remission and hope it continues to stay that way for a long time.
Like virginia satir said:
"Life is not the way it is supposed to be. It is what it is. The way you cope with it is what makes the difference."
Wonderfull news, Drz! :thumbsup:
I'm so happy for you!
MikeG-2012
08-24-2016, 03:37 AM
Glad you are doing better. I shed my boot last Thursday, and I know how you feel.
Update: Boot is back on! I started having pain in the same area as the fracture and the foot doc told me to get back in the boot for a week, and he'll do another x-ray. So this is week 8, and I am really getting tired of this plastic monstrosity. <sigh>
I just read this thread again to remind myself of how lucky I am to still be here able to celebrate my life as it is and to enjoy the challenges my health issues bring me. I'm not sure where to post an update since I also have another thread along these lines.
I was diagnosed in 2010 so it is going on 7 years soon. It took me about a year to reach a drug induced remission but I have been very fortunate to have remained in this status except for some mini flares. Some times were uncomfortable and required extra treatment, usually for infections. Feeling sick for a few weeks is no fun but much better than being in hospital for months.
I am down to annual visits at Mayo for their longitudinal study on treating GPA. My degree of recovery from near death and length of remission is considered rather remarkable since most people flare in the first year or two after their initial treatment. I have damage from the Wegs and diabetes that require frequent on going maintenance and follow up care so spend much of my life going and doing various medical treatments. Dental problems have been especially frequent which relates to my two main illnesses and the treatment I need for for both. I had another root canal last month due to infected tooth.
I have been lucky so far this winter in avoiding the flu, bronchitis, or sinus infections since the last two happened most winters. I think that keeping the humidity higher with a humidifier, using generic Mucinex and frequent sinus rinses has helped with this. I have cut down my monthly labs to every six weeks and will soon go to every other month. I must have labs every three months and see an endocrinologist in order to get my diabetic supplies. And some other doctors also require them for their annual review so I will need at least six per year but that sure beats the weekly ones in the nursing home or daily ones in the ICU.
I was housebound much of last year with a broken ankle and need to use a knee scooter to avoid bearing any weight on that foot as it took several months to heal. The slow healing relates to my illnesses, meds, and age but the ankle did seem to heal without needing any surgery to repair it so that was lucky for me. I did some PT to help strengthen my legs and improve my balance some to try avid future breaks. I also tried going off the generic Protonix but think I will have to go back on it since I now have worse gas and indigestion again. The Ranitidine didn't seem to work as well for me.
I have never met anyone on this forum in person but feel I have "met" some great people through this forum that have been very helpful to me and others. I really appreciate the effort Andrew and Vaughn put in to make this possible. And the people who take the time to post their comments and share their wisdom and supportive encouragement.
I think there is now more awareness and better treatment regimes than even a few years ago but we all remember the stress and anxiety that comes with being diagnosed with a strange illness we never even heard of. So here we can all help others and each other other through these difficult times.
Happy Valentine Days and celebrate your life however it may be today since life is for the living. And we are still here. Remember our many good friends from here who aren't so to honor them have a good day.
I am so glad that you are doing so well after all you have been through. I was also dx'd in 2010 and wow what a ride. Please continue to take good care of yourself. Thank you for your friendship and for the special things you share and information you add to this group.
Alysia
02-15-2017, 05:14 AM
We are blessed to have you with us, drz.. I am glad that you are doing much better.
I love to read your posts... not only learning from you but also having that warm feeling in the heart that you create with your words...
Thanks for remembering our friends who flied high... my beautiful Phil, my forever valentine, is watching over us all from his good place in the presence of Our Lord.
Happy Valentine Day ♡♡
2550
This is duplicate of what i posted in another thread with similar theme but this thread also contains many of the good things mentioned in this post so it seems appropriate to repeat it here even though the title should now read eighth anniversary.
I just checked and it is over a year since I posted any update on my anniversary status. I also looked over the whole thread which I do at these times. It reminds me clearly of some important things. First, I am very lucky to still be doing as well as I am at present. Two, life is great gift that we need to celebrate while we can. Many great people who help me with supportive encouragement on this forum are now gone and greatly missed. Three, tough times come and go and things often change.
Most of the current readers don't know much about me but eight years ago I was getting ready to move to a rehab hospital after spending weeks in ICU and intubation after surviving a severe bout with the wicked Granny. I then went to nursing home for a few more months of rehab care to work toward a partial return toward a more semi- independent living situation. I have now been in my light assisted living situation for six and half years.
During this time I have had a few operations to try repair some of the damage from Wegs and decades of type diabetes, various infections, a broken ankle from having weak bones, lot of dental work, and some other close calls like being hit by car walking down the side walk last summer. I spent a few anxious hours in ER that time but was greatly relieved to learn I had no broken bones in neck or back or concussion so if I could move enough to get dressed and eat dinner i could try go home. And I did.
I am a high user of medical facilities and services. I often joke that my retirement job was become a full time health care consumer since I help support a dozen doctors at six different clinics. I did decide to drop the Mayo clinic from my list last year since I found out they were not very helpful last year when I developed cellulitis in my scalp near my BAHA site and was advised i would probably need IV antibiotics due to my poor immune system and numerous allergies to various antibiotics. Despite several past assurances they would see me ASAP at Mayo if I needed help they offered no help or even advice. I did later find a good infectious specialist who trained at Mayo at one of my clinics and he is located a lot closer. And he has been very responsive to my needs and concerns about various infections.
I have been able to avoid RTX treatment so far but am reluctant to state it here so clearly since it seems such statements often seem to wake up the wicked Granny or sleeping Weg dog.
I have some waxing waning of residual symptoms but none serous enough so far to warrant RTX. I do use some Flonase Nasal spray for periods of more nasal bleeding and some times a little more extra prednisone meds. My kidney function has been amazingly stable for several years despite active type diabetes. My nephropathy is progressive and keeps getting worse but i can still walk slowly with a wobbling gait for an hour or so if I take some rest breaks. I can still drive and like to go to concerts and lectures despite my severe hearing loss. I find my BAHA really improved the quality of my life and with a remote microphone and TV streamer to stream sound directly to my two hearing aids I can usually hear enough to appreciate or understand the gist of what is said.
I spend a lot of time between medical appointments and phone calls trying to get diabetic supplies, setting up various needed appointments, and to get Medicare and my insurances to process claims correctly. That is almost a full time job by itself and usually very frustrating. But it has to be done and I feel fortunate to still have the ability and energy to be able to still do it since most of the other residents in my building can't.
Some of the old regulars on here are gone and we only have their memories. Others improved enough to resume a normal active life again and are busy living it. For the newer readers remember that with proper treatment things with Wegs generally get better. For those of us who survived some rougher times, rejoice and celebrate how much better things became. For those currently in a rough patch, remember that better times can come again. Where there is life , there is hope. So celebrate while you can.
This is the thread I started 7 years ago and kept up for many years but then started posting mainly in the Celebrate How Far we Come thread. It has some info not contained in other thread so it might be interesting for some readers who want to learn more about the history of many members.
Re: Celebrate how far we have come!
It has been 10 years since I joined the forum. At that time I was recovering in a nursing home after spending a few months earlier in a couple of hospitals.
I reread all of the posts in this thread that I started many years ago. It brings back a lot of memories and feelings. One obvious difference is that 10 years ago before Facebook and other social media became a big source of support, this forum was basically the only game in town and there was a lot more activity on it. You can notice that in the early years there often would be several posts even on the same day. There is also a very impressive amount of wisdom noted in many of the posts here that people contributed in the past.
Of course one of the sad things about rereading this thread is many of the brightest lights that were present in the forum years ago like Jack, Al, Light Warrior, Phil, and others are gone. Many others who were active years ago have dropped out and hopefully most are still doing okay.
Many things are different today for everyone because of the pandemic. But 10 years ago my situation was virtually the same since I was sequestered in the nursing home due to my very suppressed immune system from the high dosage of immunosuppressant drugs that I was taking. I had to eat alone and was not allowed to go to any group activities. So it is sort of ironic that the more things change, the more similar they can become.
Like many people on this forum I am considered to be at a very high risk of having a serious reaction if I develop Covid-19. I still take maintenance drugs which suppress my immune system and have had several infections in the past months including pneumonia and bronchitis and sepsis which apparently have created some additional damage to my lungs which were heavily damaged from the wicked granny 10 years ago. Plus I have type I diabetes and kidney damage and am considered well into the high risk of older people because of my age.
I recently read a study where people age 75 and over who had diabetes had a 80% death rate within a week after being diagnosed. So with all the additional risk factors I have I can understand why my internist told me that I am the poster child for the most vulnerable patient he has. So of course I have a lot of anxiety about catching SARS-CoV-2 and developing Covid-19. So I tend to be very vigilant and wear a face shield and mask any time I have to go to the hospital or medical facility which seemed to be the safest places since everyone there is wearing a mask.
Most of my social contact today is by phone or text messaging and emails with an occasional zoom meeting or video chat. I am currently waiting to start a televisit with the doctor who has followed my treatment for the wicked granny since I was released from the hospital over 10 years ago. At that time I had my choice of picking the kidney doctor, the lung doctor, or the rheumatologist and I think I was lucky to pick the last one since the other two left the practice years ago.
For the first few years I was also in the research study at the Mayo Clinic with Dr. Ulrich Specks and that help me learn a lot about this weird disease and how to manage it.
My feelings of gratitude for my good luck to still be here 10 years ago are even greater today given the passage of time and the high risk currently present from the Covid-19 pandemic sweeping the world. I recently lost one cousin to Covid-19 and one younger cousin to cancer. In my state of Minnesota over 80% of the fatalities have happened in nursing homes or other congregate care facilities like the place where I currently live. I have been in this light assisted living apartment almost 10 years which is attached to a nursing home and regular assisted living program. Our facility has been virtually shut down for several months with restrictions on visitation and precautions like screening the staff for temperatures every day they come to work. We have all been tested three times in the past month and so far we have been fortunate that only one staff person has tested positive and that person had never worked in this building.
At the present time I feel my GPA symptoms are quite stable which makes me happy. I was able to get my maintenance prednisone medicine back down to 7 1/2 without any significant increase in my residual symptoms and hope I can continue to reduce it further till I get back to the level of 5 mg a day which seemed to work for me okay for several years. My azathioprine dosage has remained constant and is only reduced when I end up in the hospital needing IV antibiotics for pneumonia, sepsis, or some other infection. They also increase my prednisone meds during these times and it has been a sxztruggle to try get back down to lower dosages.
The current pandemic may have downsized our life and limited our social contacts even more than for most people. But many of us have been through some tough times when we were first diagnosed or treated for a serious flare. So if we are doing better today than in the past we need to focus on how lucky we are to have improved and still be here to enjoy the life we currently have and try to make the most of it while we can.
Best wishes to everyone and hope for some effective treatment and vaccine to help end the current pandemic. Back in 1918 the flu epidemic was far more serious in the number of fatalities than our current pandemic and millions of people lost their lives all around the world. But things did eventually get better and most likely they will again soon.
DrZ
Knowledge is power! Wisdom is using it to make good decisions!
Very nice post, drz. You and I came onto the forum scene about the same time and, like you, I was thankful for all the support. I was lucky enough to meet Phil and Light Warrior before they passed and I became very good internet friends with Jack. All the deaths have been difficult.
I count Andrew and Geoff as being close friends. We send e-mails back and forth daily. And when I get up early in the morning I can text a "play request" to Geoff and he'll play it on Braintree Easy Listening FM, where he hosts the Breakfast show! Of course, I don't get his radio station in the US, so I have to listen on the internet, but I still hear it and its a connection.
This forum has meant a lot to me and I'm glad it still plays an important part in other people's lives, too.
Alysia
07-16-2020, 08:39 PM
Thank you for sharing, DrZ, and for being here with us all the years. I "hear" your worries considering the covid19 and I understand. We can only be as careful as possible and leave the rest to the providence of God. Sending you prayers for good health for many many years to come, we need you around here. Stay safe.
It has been such a pleasure to have you right beside us on our journey though these many years of unpredictable ups and downs. There are so.many of us who came a board around the same time and this was the only place for information and fellowship out there. I am so grateful that you are doing so well! You have been through the mill and come a long way. I have also had my 10year anniversary of my lung VAT on 4/24/20, although it took them until Sept 2010 to dx. We have all been through so many different experiences and this forum has been such a great tool for us to connect and feel we have people in our tribe. You continue to
take good care of yourself old friend. Wishing you all the best and many more anniversaries!💗
In recognition of my 11th anniversary of my diagnosis of Wegener's granulomatosis I posted underneath my other thread about celebrating the fact that we are still here. Those of us that have been here over 10 years can remember many of our past active users that contributed greatly in their wisdom and support which we so desperately needed.
My 11th anniversary was about 10 days ago on 21Apr. I guess I completely missed it. Maybe that's a good thing. Yes, a lot of friends have come and gone, but, more importantly, a lot of friends are still around.
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