Celebrate how far we have come!

[drz]

I realize i have developed new behaviors to help me celebrate life. Rereading this thread certainly reinforces my joy of still being here since some others who posted in this thread, who were younger and seemed in better health are gone. Some of the other posters in this thread have dropped out or moved on and are hopefully busy enjoying a better life.

I was asked recently why I decorate my door area and windows so much to celebrate various Holidays like Halloween, Thanksgiving, Christmas, New Years, Valentines, St. Patrick Days, Spring, Memorial Day and Fourth of July etc , and why I do things like help the Easter Bunny deliver treats to my neighbors along with many cards and Valentine treats etc. Today I am getting ready to peddle May Day baskets to my neighbors tomorrow.

I think I do these things due to my joy of still being here and to celebrate on any occasion because I still can. I often arrange for parties or dinners out to help others celebrate their birthdays or other events too and share in their joy too. Many of my senior neighbors no longer drive. I have also noticed that such acts of kindness often are reciprocated and passed on to others too, so it makes for much more pleasant living situation for me and everyone else. Another fringe benefit is people know where I live and can find me easily as my place is the one with all the decorations by my door and the flowers and bird feeders outside my window. Others also enjoy my flowers in season and watching the birds at my feeders which only increases my joy. So celebrate your life whatever it may be today however you can!

[annekat]

drz, thanks for sharing the way you celebrate life. I'll bet the kids in the neighborhood, and the adults as well, love you for it. Not to mention the birds.

[Alysia]

drz, thanks for sharing the way you celebrate life. I'll bet the kids in the neighborhood, and the adults as well, love you for it. Not to mention the birds.

not to mention us

[Sangye]

drz, I Super Like your post and how you spend your time benefiting others.

[windchime]

Today I am getting ready to peddle May Day baskets to my neighbors tomorrow.

Love May Day baskets. Reminds of when I was a kid. My grandkids asked me the other day, "what are May Day baskets." I proceeded to explain.....

It's great that you continue to give and enjoy it so much. It helps keep you young(er) and I'm sure those on the receiving end really appreciate it. Kudo's to you and for all you do.

[MikeG-2012]

You know the secret to life, it's that there is no better feeling than to make someone's day! Kindness, even in today's society is still contagious, so pass it on!

way to go drz!

[drz]

Originally Posted by Al
Debra, I do not have nearly the problems that drz and many others have. Not that the disease is friendly for any of us. But I would like to keep my own travails in perspective. I may be a Sick Old Man, but I am incredibly lucky nevertheless.
Al
Originally Posted by Lightwarrior
After everything that you have been through, your strength and spirit. My bets are on you, you will finish the ten year agreement and need to sign up for another ten years.

I was going to start a new thread and call it "Things do get better" but then I felt sad when i found these two posts by two of the nicest people I missed dearly from this forum even though i never met them in person. Yet, I felt I knew them and that they knew me better than almost anyone else I know. So I may now have to call this post "Things CAN get better with treatment"!

I saw my Wegs doctor yesterday and got another good check up. It has been six months since I had elevated inflammation markers along with any troublesome symptoms like more blood in sinus rinses, joint pain and increased fatigue. My residual symptoms increase when they are exacerbated by any infection. I call these periods a mini flare but my doctors don't regard these as serious if i can get them under control with an antibiotic for a few weeks and slight increase in steroids and/or my maintenance azathioprine.

I always have the usual residual Weg stuff like excess mucous down the back of throat, lot of fatigue which I think relates more to my kidney damage, lung damage, neuropathy. loss of balance and serious diabetes but generally things feel good to me. I have developed more problems with skin lesions with two new weird or rare pre-cancerous lesions that need to be biopsied and frozen when they appear. These result in people with poor immune systems like people who have diabetes and/or take immune suppressant drugs. This requires more trips to my dermatologists but seems a minor problem to me. I am very grateful my kidney and lung function remain stable in their impaired condition with no major changes in past two years. My hearing was greatly improved by the BAHA operation and my other hearing aid. I have really enjoyed several music concerts in past few weeks. I believe I can now hear music well enough to dance to it if my feet could keep up with my hands. I also can appreciate my fringe benefit of sleeping through noisy problems that bother my neighbors. "What sirens" "What chain saw" "When was the storm" as I don't hear such things at night when i remove my hearing aids. I can't hear much in noisy settings or outside with a significant wind but I now longer feel isolated by being almost deaf or seriously hearing impaired.

We are now enjoying some beautiful Fall weather. Our trees are in midst of their vivid color change, our temps are perfect for being outside, and our nights have been cool enough to get rid of the mosquitoes and most other problem bugs. It is great to be outside now walking in the woods. I now feel comfortable walking a quarter of mile at slow speed to enjoy the scenery and believe I can go a half mile or more if necessary. Pulmonary rehab and vestibular rehab helped me a great deal in feeling more comfortable walking even without a cane. I don't do any five mile hikes or ten mile bike rides or ice skating or cross country skiing anymore (at least not yet) but I can still enjoy a short walk to appreciate nature. I often do a little geocaching as an excuse to go on a short walk with nice scenery. This all so much better than sitting in wheel chair in a nursing home or hospital or being too exhausted to get out of bed.

I have arranged a pretty good health support system for myself which involves a dozen doctors at six different clinics. One is a world known expert on GPA at Mayo so i feel I am getting good medical follow up and care when needed. I think my amazing recovery makes me a good subject for their longitudinal study on treating GPA. I usually have some medical appointment once or twice a week, take lots of meds every day, have to check my blood sugar every hour or two and make adjustments in my insulin pump, but still regard myself as being in pretty good health when compared to three years ago since I have had a miraculous recovery and major improvement. I know that my health is very poor compared to most people my age so I don't have a delusional loss of reality, but I am very grateful for what I have now and what I can enjoy today. My pred is down to 5 mg so i don't think I have any major delusions of adequacy right now or manic euphoria like i did when at the real high doses in my first year. So, Yes, things really have gotten better for me. I have not had any urinary tract infections since my operation to fix my bladder last year. My vision is better, not perfect, but better. After cataract surgery a year ago I now usually get by with out my glasses except for reading small print.

I used to enjoy traveling but in past year I have only had one short trip but am starting to entertain thoughts of trying some more short trips and traveling just for fun, and not just my medical trips. I think a short cruise might be best for me so I could rest often and nap as needed.

Celebrate what we have now and what we can do today to enjoy our lives. I think that is the best way for us to honor the memory of Al, Jack, and Lightwarrior.

Another year (almost) later and things are mostly the same as listed above and elsewhere in this thread and some others I have started.

My GPA seems to remain in a drug induced remission according to my lab work and symptoms. My diabetes control has finally improved to to the point it was similar before Wegs and pred meds. My lung and kidney function remain stable which is great. My anemia issues have not returned. My endurance has improved to where I can walk several blocks now and fatigue decreased to where I can often skip a nap some days.

The main issue I have is the on going care required to deal with the damage caused by my Wegs and diabetes, and the complications resulting from the treatment for both.

I often have to have skin lesions (DSAP and actinic keratosis) frozen to remove them since they are considered pre-cancerous. The lesions are attributed to my weak immune system from Wegs, the drugs I take for it and my diabetes.

Another issue the weak immune system and diabetes cause for me is dealing with esophagitis aggravated by fungal infection in throat and esophagus, GERD, weak immune system, diabetes, Fosomax and AZA meds, etc. My local doctors diagnosed fungal esophagitis and tried treating it with Nystatin but I developed an allergic reaction to it. I stopped the meds and one doctor told me not to worry about it if it wasn't causing me pain now. My doctors at Mayo said it needs to be treated by a good ENT doctor.

The GERD and post nasal drip continue to be irritants. I was told if i sleep sitting up or with head elevated it might help reduce GERD symptoms so I have added a lot more pillows to my bed.

My ENT doctor who did my BAHA said he didn't see any evidence of thrush (fungal infection) in my throat but did tell me my BAHA site was infected and I need a bone scan to see if it has spread into my skull since the treatment would be different. Antibiotics would also tend to increase or worsen any fungal infection in my throat so it is recommended i see an infectious control doctor who specializes in treating infections in us hard to treat cases. The local doctors who scoped me didn't do a culture or biopsy of esophagus so it is uncertain to me as what is in my esophagus. I know the local doctor had never heard of GPA so that wasn't very reassuring. It was nice he said he didn't see anything that look like esophageal cancer or in problems in my colon but then our local clinic has misdiagnosed cancer before with my ex wife and with another friend is now dying from esophageal cancer from their failure to detect it and treat it early enough. So if I feel the need for another gastroscope I will probably go to a larger clinic where I would feel more confident in their skill.

My neuropathy progresses so I am starting to get some new pains in feet at times but still feel them enough to keep walking around. My teeth often disintegrate from my dry mouth and bone loss caused by meds and other health issues too so I usually get a couple capped each year but I am only missing one so far.

So I am still celebrating and enjoying my life and I generally feel fortunate that my health is as good as it is currently since it has been far worse in past years.

However, I do find it ironic and sad that Al and Lightwarrior who were so encouraging and supportive in their posts in this thread are already gone while i am still here trying to carry on their good work. So lets keep celebrating our lives in their honor and memory.

[brew22]

So glad I found your first post.. So similar to mine.. I will write my story but haven't been able to yet.. I think the Intubation creates so many problems and have read it can cause post traumatic stress syndrome. But yes I would not be here if it had not been done.. Thank you for your story and you are doing so well it gives me so much hope. Susan

[drz]

i needed to read this thread again to remind myself how lucky I am even though I feel like crap from being sick most of the past two weeks. But when I read the posts from those who are gone, now add Phil to the list, whining seems pretty petty and out of place. But I needed to remind myself how lucky I am to feel this sick since I am still alive.

It is now about five years since the Weg dog bit me hard and I was lucky to escape its clenches. I have still been considered in a drug induced remission most of the past few years with the same maintenance meds of 5 mg pred and 175 of Azathioprine plus the usual addition of various meds to control the side effects of the meds and damage from the Weg attack and years of diabetes.

Every Fall I seem to have an increase in the residual symptoms of GPA (my concession to the new term here) and the mucous production increases along with more blood showing up in the nasal rinses, joints and muscles hurt more and fatigue increases. I usually get a sore throat from the excess mucous and have a large increase in coughing along with developing either sinus infection, bronchitis, or pneumonia. Two years ago I had all three which lasted from before Thanksgiving to after Valentine. I ended up in ER Christmas Day that year. Last year I tried to get a jump on it and got an antibiotic before Thanksgiving Day to treat my sinus infection and bronchitis to try avoid the holiday rush and it seemed to help as I only felt sick for a couple weeks. This year I had some delusions of grandeur and thought by using more sinus rinses, steroid nasal spray, humidity and hand sanitizer that I might be able to get by without any antibiotic. Two days before Xmas I realized I was wrong and went to get one.

I was feeling pretty good in a few days and not coughing up any more gray green mucus plugs and felt pretty good on NY Day and thought I had lucked out again. Then the bottom fell out with a night of extremely violent coughing that kept me up all night. I was still on the antibiotic so knew it probably wasn't a bacterial bronchitis but a virus one for which there is no treatment except for the side effects. The next day I had a long all day medical trip and was so exhausted by the time I go home and feeling so sore all over, that I was worried I was having a major GPA flare for first time in years. i hadn't felt that sick since I was diagnosed with GPA. So I went back to the Walk In Clinic to see if I could get some help to sleep that night and rest up in case I needed to go to a major hospital again for some intensive GPA treatment next week if necessary.

I knew they didn't have much ability to test for a GPA flare in their limited lab but was willing to take whatever help I could get. They did confirm my WBC was still elevated. I was told after her exam, I think you have the Flu. Well 22 or 26 residents in the nursing home next door have the flu and staff go back and forth to our living area and the living units where there are active cases of stomach flu. So this was a real possibility but in my ignorance I said I don't have any diarrhea or vomiting so how can I have the Flu. She said you have Type A flu and the flu shot for Type A this year was pretty worthless and not very effective but the shot might have given you a milder case since you have no fever.

I got my Tamiflu meds to help ease the flu symptoms and my codeine cough syrup to help me get some sleep and they both helped a great deal. I am still sore every time I cough, very tired and sleep all but a few hours each day. I think I got dehydrated from feeling nauseous from the Tamiflu (unfortunate side effect for Flu, right?) and wasn't drinking enough. So I fainted twice and injured myself at 3 am when I got up to fill my insulin pump. I bruised my hip on the chair I broke when I fell on it (another lucky break since it was the chair that broke and not my hip) and I scraped about three inches of skin off my forearm. I probably hit my BAHA insert too as it was bleeding the next day but my loaner hearing aid seems to work OK on it.


When i woke up on the floor that night I remember thinking how lucky I was to be living in my light assisted place where I could summon help with my call button. Only problem, I hadn't used it for over three years and it was on my dresser which i couldn't reach. After sleeping on the floor a bit I did manage to make it back into bed OK.

The next two days staff and a neighbor came to check on me to see if i was OK and offering to get my food or anything i needed. I am feeling somewhat better after taking 80% of my Tamiflu meds and expect to feel much better soon. I know I am really lucky to have the flu and not a major GPA flare that requires Hospital treatment. I didn't know that one can take Tamiflu at half dosage for ten days to avoid getting the flu in the first place but will certainly consider that next year when we have another flu outbreak here.

i hope to rejoin my usual activities in a few days and celebrate my life again with more gusto.

I hope your New Year started out well for you and that you can also celebrate your life today, what ever it is, with gusto.

[mrtmeo]

Hi drz,
Your story is amazing!
If you gained 40% of your kidney function, do you know what your gfr is?