Worst things about having Wegener's granulomatosis

[drz]

Worst things about having Wegener’s granulomatosis:

On a support forum for diabetes I saw a thread on things people hate most about having diabetes. It got me thinking about the most irritating things that come with having Wegener’s so here is the start of my list in no particular order:

1. Having to learn to spell it so you can write it on medical forms, emails, and other places.
2. Never knowing if that cold you just got is just a cold or start of new flare.
3. Never know if the pain in your joint means Wegener’s is coming back. Never knowing if any new pain or symptom means something bad might be going on.
4. Having to try explain to people that auto-immune disorder doesn’t mean your immune system is too weak. It just doesn’t work right so you have to take dangerous meds to try keep it weak and subdued.
5. Having to takes lots of different meds with undesirable side effects just to stay alive.
6. Being your pharmacists best customer and having to support a number of health care providers so they can take trips with your money while you can not travel anymore.
7. Having to adjust to various losses in your ability to function due to damage from the Wegener’s such as loss of hearing, trouble walking, poor balance, lack of endurance, etc
8. Having emotional meltdowns from number 7 or effects of prednisone.
9. Having a good day means being able to get out of bed and engage in some activity for a couple hours even if it is at a very slow or limited basis.
10. Having to try educate or explain to some doctor, other than your treating rheumatologist, what your symptoms might mean or what treatment might be needed. Why you are concerned?
11. Hearing people say you look better now that you gained some weight after you gained 50 pounds from being on prednisone,
12. Seeing how you look in the mirror after your weight gain and not having any clothes that fit. Feeling you have to eat again three hours after eating a big meal because of the prednisone.
13. People not recognizing you because of your new new look with nice moon face and Buddha belly. Maybe this is a good thing sometimes, but not when trying to cash a check at your local bank.
14. Wondering why you had to be the lucky one out of 25,000 to get this nice disease?
15. Having to give blood and urine every week or two so your phebotomist looks like your best friend.