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andrew
05-18-2008, 12:42 PM
**Terri's story - relocated from the original site by Andrew**

I have a terrible time with this disease and with me it depends on my mentality for that day. I don't seem to cry as much as I once did, but when the tears come I can't control them.

It usually happens when I am alone or something will set me off because I realize I can't do things that I want to do. Things that use to be a chore would be a blessing now if I could just do it.

After reading the stories posted on this site, I realize how fortunate I have been. Each person has different symptoms and circumstances. Some of which I haven't experienced and hope I don't have to but then you never know what the future holds. We just take one day at a time and my favorite saying is: God will either shield me from the suffering or give me the strength to bear it.

I can remember my mom saying over the years,"something in your house is making you sick". Maybe she was right..isn't your mother always right?

For the past 10 years I had numerous sinus infections, bronchitis, pluresy, usually upper respiratory problems. I noticed these things would occur after cleaning my basement, which over time would have mold and mildew that needed cleaned up. Sometimes antibiotics would work and sometimes I would need more and more. I always got better but was constantly fatigued and would have to fight to keep going.

I stayed active or at least I thought, enjoyed the outdoors ,had a garden, mowed grass, plus had a full time job.I seemed to have more aches and pains but after all, I had turned 51 in May.

I expected to see many changes after 50. That's when I decided to change my life for the better. I tried four times that year to quit smoking, changed my diet and joined a gym. I was feeling great for almost two years . I didn't even have the flu.So where did I go wrong?

Jan. 2007 I started to have tingling in my fingers and toes after a day of work, but it would go away.

A few months later, I would have burning above my knees that also went away but would come back after I had been on my feet for long period of times.

Wheezing at night if I couldn't cough up enough phlegm to breath comfortably. I just blamed that on 32 years of smoking but continued to smoke knowing it didn't help me any.

I seemed to be suffering from too much stress most of the time. Things that were out of control seemed to make me think I could fix it and when I couldn't, it just added to the stress.

In June 2007 I noticed a pea sized lump on the calf of my right leg. I went to my primary care Dr. and she put me on Cipro and said to see a dermatologist if it didn't improve in a few days.

In the meantime, she had set me up to see a rheumatologist because of the last blood work I had done.She said it was "time" to see that type of Dr.

July 18th I saw my dermatologist and he did a routine biopsy on the pea sized red spot. Two weeks later he said everything looked good but expected eyethema nodosom which was a sign that something else was going on, he just didn't know what. I complained of pain at the biopsy site and burning in my leg. He put me on more antibiotics and for the next two weeks I was back several times. The biopsy site kept getting bigger as if my flesh was being eaten away. Antibiotics and ointments were being changed each time I went back and I would give each a day or two to work but nothing was working. The pain was getting more intense and the hole was getting bigger. I was scared. Almost too scared to go to the emergency room but on Aug. 1st I couldn't stand the pain anymore and I had my son take me to the hospital.I thought maybe a few days of antibiotics from an IV and I would get to go home. If nothing else at least I would have something for the pain.

Hooked up to an IV ,I was having low grade fever, chills, aches just a feeling of not being well. Test after test, different antibiotics, two debridings of my leg. By this time, I could stick my fist into the hole in my leg. That was reason enough to give me ill health. I was just not with it. Living on pain medicine and they couldn't figure out what was wrong with me, I asked to be sent to a research hospital.

On Aug. 15th, I arrived by ambulance to the bigger hospital 100 miles away. Immediately, I had Dr.s everywhere looking at this test and that, it was like a whirlwind for the next two days and then a little break for the weekend.

Most of the symptoms I was asked about, I just didn't have. The fatigue, low grade fever and aches all over was about it. I think it was a blessing that I had the biopsy on my leg because I think it started the whole process in motion. Possibly getting me an earlier diagnoses.

Monday they told me I needed a lung biopsy to rule out lung cancer and they were sure it was Wegener's disease.

Tuesday Aug. 21 I had the biopsy done and right away they said it was Wegener's. On Aug. 22, 2007 it was confirmed that I indeed had Wegener's. The next day I was home. I was still totally dazed and confused. Of all the Dr.s I had seen in the hospital, my care had been narrowed down to the rhumetologist. I was taking 60mgs of Prednisone, 100mgs of Cytoxin, 500mgs of Bactrim, a water pill, Fosomax, vitamins and pain killers.

I was just glad to be home and could finally cry some "happy tears". I still didn't feel real well and sleep came in spurts but at least I was home.

I had a visiting nurse to come in with helping me to change my leg bandage but also had to do it myself. I would shake so bad when I had to do it.

All of my follow up appointments were good and I only have to see the rhumeatologist and plastic surgeon for now.

I have a wonderful lady who calls me from my insurance company who has provided me with useful information and support.

I contacted the vasculitis foundation,, received the information within days and have contacted several people through the vasculitis foundation and for them I am so greatful. I found out that this is something you just don't want to face alone.I also have many prayer buddies.

Sometimes I'm not sure which is worse, the disease itself or the medicine given to help you. I have a few good days but more bad ones but then again, I'm still waiting to hear that word remission. I know it will come. I'm getting my leg fixed and feel good about that. I think once my leg gets healed, the rest of me might do better.

I had my first plastic surgery on Sep. 13th, a second one on Oct. 4th and today the 15th of Oct. my Dr. felt good enough about using "my skin" this time for what may be the last skin graft.

It has and will continue to be a long road to recovery but I am a fighter and I plan on taking one day at a time. That's all we can do right?

I've already been there where you wonder, why me? The thoughts of not waking up from surgery sometimes sound good to me but then I do and I feel that God has a plan for me.

As long as I wake up every morning, even if it is 2am in the morning, I have to figure out what it is for that day that is going to make a difference either for me or someone else.

Help is out there if you want it and as I said at the beginning of "my story", mentality plays a big part in how you feel.

I wish the best to anyone who has dealt with these diseases in the past or will in the future.

God bless us all! :-) Terri

Trish
06-08-2008, 02:34 PM
Hi Terri
Like you I find I cry a lot about my predicament, mostly in private, but sometimes when people ask me how Im doing and start asking too many questions I find I break down and cry. Its better sometimes not talking about it, not that I ever have a chance to forget that Ive got it, but when you get that sympathy look, its really hard. I have not heard of similar symptoms as you describe with your leg before. You wonder when it will end, as it hits just about any part of the body. One doctor told me if he wanted to put a curse on someone he would give them wegners. I wonder who put the curse on me and what I had done to deserve it!!!
Anyway enough of negativities, I guess its just a matter of changing lifestyles. I have always prefered to be outside than sitting around inside, but due to my shortness of breath, unfortunatley thats just about all I can do. So when my eyes feel ok I read and play around on the computer, things that I never had much time for before. I love listening to music so thats also a bonus.
Thanks for sharing your story and all the best.
Trish

Terri
06-21-2008, 12:54 PM
Hi Trish,
I've had my story out there for awhile but just since Andrew changed the forum recently I decided I would join in. I really don't know what to do :confused:
Once I did join a chat room but decided I didn't have the time or patience. I have slooow dial-up connection and it takes forever sometimes just to check my e-mail. If this message ends up "lost in space" or where ever things go, I won't be upset. I have a little more patience than what I use to have.:eek:
Right now I'll let it go at this and see what happens.
Sincerely, Terri

andrew
06-21-2008, 03:38 PM
And thanks for joining up Terri :)

I do hope you can make it back here regularly. You're welcome any time!

Trish
06-25-2008, 03:43 PM
Hi Terri
I have just got out of hospital. My breathing was so bad I couldnt handle it any more so made a visit with my Dr who sent me straight to Wellington Hospital to see my ENT Specialist. It was lucky I went when I did as after having a CT scan and all the other tests etc. it was decided that I needed to have a tracheostomy as my airways had closed over to 3mm with normal breathing and of course as I would cough or excert myself it would close over completely. It was all a blur I didnt really have time to think about it really, in on the Friday and operated on the Sunday morning. I was in hosptial for 10 days. I havent done much research on them, which is proberbly good as sometimes it pays not to know too much, otherwise it can be even more scarry. It willl take a while to get used to it I guess, at least I am able to walk and do things although not as good as I had hoped. Perhaps it will take me a while to get adjusted and get back to a reasonable fitness level as I havent done any exercise for a while so quite weak. My speach is a little raspy but normal so Im lucky. Back to work on Monday and then hopefully on wards and upwards.
All the best
Trish

Terri
06-26-2008, 12:31 PM
Hi Trish,
Sorry to hear you are having problems, but glad to hear they helped you.
I have been fortunate so far as to not have ENT problems and hope that I never will.
I wish the best for you.
Sincerely, Terri

andrew
06-26-2008, 06:49 PM
So Trish, are you saying you still have it in or did you just have the Trach in at the Hospital?

I remember my trach. It was a glorious day indeed when they took it out. I hadn't been able to talk for five weeks. They ended up having to sedate me to shut me up :D:D:D

Trish
06-27-2008, 10:24 AM
Hi Andrew
Yes I still have it in and will need to have it for approx a year. They are saying they need to get me into remission and then wait a while after that before they would be able to operate and put an internal tube into my airway, otherwise the WG might attach the affected area again. I was lucky I couldnt speak for the first 3 days but when they replaced my tube and gave me a speaking valve it worked wonderfully and my voice is the same except a little raspy (especially when I have been talking too much. I was worried I would have a robot voice. It isnt the most comfortable contraption to be wearing but it sure beats not breathing. How long did you have to wear yours and did it become second nature to you. I hate the way when I cough it makes duck whistle noises as the air is released or when I sit down sometimes it sounds like I have sat on a whooppy cushion (farting noises from my throat). Im hoping the coughing will subside as it is early days yet. Love to hear any info you have that you found would make it easier.

Cheers
Trish

andrew
06-27-2008, 07:03 PM
A year huh? That's a little longer than I had mine. Mine was only in when I was in Intensive care (about 5 weeks). I couldn't have any solid food, for that entire time which was a bit of a pain in the bum but hey, I was alive and that's what mattered.

It took me a couple of days after I woke up to get used to it but on the whole my experience was ok. The tube between the trach and the ventilator popped off a few times which stopped my breathing altogether. I took those times amazingly well in my view. I had a dedicated nurse that was always there to pop it back on and after the first couple of times I could do it myself. I think the reason I took not breathing so well was because I was do darn bored!! :D

The only real complaint I have about it was shen they cleaned it. It was like tickling the back of my throat with a feather :D and it made me hack a lot. I still have the scar to remind me. It gets fainter every year and I know that I'll miss it when it eventually disappears.

On the whole though, I'd rate my experience with the ol' trachy as 10/10. The trachy and the ventilator were the only two things between me and the pearly gates for about two weeks. I couldn't help but love it :)