NICIAW - Pyoderma Gangrenosum

Jay wrote:

1. The illness I live with is:
Pyoderma Gangrenosum - you can't see it under the dressings I wear

2. I was diagnosed with it in the year:
2012

3. But I had symptoms since:
2010

4. The biggest adjustment I’ve had to make is:
Having periods of extreme inactivity in order to let lesions heal

5. Most people assume:
That the wounds are self inflicted, and/or that they hurt only as much as they look like they hurt.  They don't know the agony.  They also assume that traditional wound care is the best approach, when it really is not.

6. The hardest part about mornings are:
When a new lesion is forming and it has adhered to the dressing overnight, while the pain relievers have all worn off, and I have to not only unstick it but redress it before I can do simple things like walk around the house to prepare for my day.

7. My favorite medical TV show is:
I'm a House fan - I like dark humor.

8. A gadget I couldn’t live without is:
It's a toss up between Vaseline gauze and Duoderm - without either, I've got nothing I can use to put dressings on my wounds.

9. The hardest part about nights are:
The pain seems to creep in even more at night, probably for lack of distraction.  Laying awake from pain while so tired that tears are flowing gets old, fast.

10. Each day I take __ pills & vitamins. (No comments, please)
2 pain meds, and 5 other prescriptions

11. Regarding alternative treatments I:
Have only found alternative methods of advancing my condition; at this point, having found a system that works as well as medically expected, I am not interested in other options to try.  I am allergic to most dressings as well as many substances one might ingest. 

12. If I had to choose between an invisible illness or visible I would choose:
Invisible.  I prefer not to be the center of attention.

13. Regarding working and career:
The various things I have fought in the last several years have killed my career.  I work as a Martial Arts instructor part time, and the P.G. makes that occasionally nightmarish painful.

14. People would be surprised to know:
That I complain less and use less pain medication than is expected of someone in my condition.

15. The hardest thing to accept about my new reality has been:
That I can't just fix it, that I can't prevent it, and I can't really do anything about it once it flares up.

16. Something I never thought I could do with my illness that I did was:
Keep my leg - doctors were talking about amputation prior to diagnosis.

17. The commercials about my illness:
Don't exist.  It's a gruesome, painful illness but is thankfully pretty rare.

18. Something I really miss doing since I was diagnosed is:
Taking a long, hot bath.  I haven't had the chance since due to the constant lesions on my legs.

19. It was really hard to have to give up:
The long hot baths that I used to enjoy every night.

20. A new hobby I have taken up since my diagnosis is:
Wood working in earnest.

21. If I could have one day of feeling normal again I would:
Remember that hot bath idea?

22. My illness has taught me:
That people are quick to judge and slow to show empathy when they can't understand or explain something that is going on.

23. Want to know a secret? One thing people say that gets under my skin is:
"That looks absolutely disgusting."  Also, when they say "that doesn't look bad at all."

24. But I love it when people:
Just treat me like the regular person I am.

25. My favorite motto, scripture, quote that gets me through tough times is:
I can do all things through Christ who gives me strength.

26. When someone is diagnosed I’d like to tell them:
If a dressing seems not to be working - do something else.  And don't let anybody perform a debridement on your wound, it will only make things worse.

27. Something that has surprised me about living with an illness is:
How little support is actually available for someone in my situation.

28. The nicest thing someone did for me when I wasn’t feeling well was:
Went and refilled my pain medicine prescription, then came back and made me dinner to eat with the pills.

29. I’m involved with Invisible Illness Week because:
It's important to raise awareness even of less common illnesses.

30. The fact that you read this list makes me feel:
Like I had a chance to be heard.