What kind of adjustment did you attain after diagnosis and initial treatment?

[pberggren1]

drz:

I was able to work a little after diagnosis and getting out of the hospital. It was about 2 months after getting out of the hospital that I returned to work but it was only part time. About 20 to 30 hours per week. I could leave early if I was not feeling well and could call in sick any time. I had that job for about 6 months and then quit because it was getting to be too much. I couldn't handle it physically any more.

I had my first flare in the summer/fall of 2004.

I was able to work again in 2007 almost full time for about 5 months.

I worked part time as a security guard from the fall of 2008 to early 2010. I had to quit this also because of sinus and lung infection.

So work is really non existent for me and most of us on the forum. I have never been able to find work that is non stressful and not physically or mentally taxing that would be considered gainful.

[Sean48]

thanks for the update JANW. This is the kind of info I am looking for. Very encouraging. Your right. Alot of people in the forum and having issues and I appreciate that. I hope you all feel better soon. Being new with WG I am still quite lost but learning more every day.

[drz]

I think the term impatient describes me well although I have worked very hard on becoming much more accepting of things I can't control, such as WG symptoms and reactions to its treatment. I have got accustomed to having frequent changes and new issues in my treatment every few days.

Thank everyone for sharing info on themselves and helping me work toward a more realistic expectation for myseelf and adjustment in near future. This forum is only place I have found people whose WG symptoms equal or exceed my own since i had a more serious case than others I know who also have or had WG disease. In that way I agree we are a somewhat skewed sample with more complications than some who are lucky to have rather mild forms of WG and easier treatment regimes.

[Jack]

I'm going to have another go with some stronger pain killers. This time I will start on a low dose and try to build up to the full prescription. Everyone else seems to take Tramadol without problems and I can usually tolerate almost anything.

I've been taking Tramadol slow release at half the recommended dose for four days now and I think I'm walking a bit better with little in the way of side effects. I'll give it a full week and then try going up to the standard dose. In the meantime, I've asked for some sticks so that I can practice moving on from the crutches that I'm still having to use at present.

[Lola]

You go, Jack!

[elephant]

Great to hear Jack. Even my children like to use sticks!

[Sangye]

Yay, Jack! I knew you'd find the right combo.

[drz]

I've been taking Tramadol slow release at half the recommended dose for four days now and I think I'm walking a bit better with little in the way of side effects. I'll give it a full week and then try going up to the standard dose. In the meantime, I've asked for some sticks so that I can practice moving on from the crutches that I'm still having to use at present.

Some one sent me an email recommending walking sticks or staffs since they read they are better than cane for keeping you in better posture when walking. she said they worked much better than walker too when walking her dog.

[pberggren1]

That makes sense to me drz.

[DEE]

Im using a walking stick at the moment Go for it Jack but please be careful DEEx