A Lot of Questions and Answers

Apparently, it is “National Chronic Invisible Illness Week” or “You Don’t Really Look Sick Week” or something like that. Since I’m going through a flare and haven’t left the house in days due to it, I’m going to answer these questions that are going around online.

1. The illness I live with is: Ankylosing Spondylitis (AS)

2. I was diagnosed with it in the year: 2007

3. But I had symptoms since, well it’s hard to say. My main symptoms came on quickly and severely after a bout with mono and parvovirus b19.

4. The biggest adjustment I’ve had to make is having to not be so fiercely independent.

5. Most people assume I am not dependable or am unable to commit. Both are very far from the truth prior to my getting sick.

6. The hardest part about mornings are that I’m very stiff and it hurts to move.

7. My favorite medical TV show is House. Before my long road to a diagnosis I really wanted to be House’s patient because I knew he’d figure out what was wrong with me.

8. A gadget I couldn’t live without is my laptop.

9. The hardest part about nights are that I cannot sleep without Ambien due to pain.

10. Each day I take too many pills to treat AS. I take an anti-inflammatory twice a day, a TNF-blocker shot once a week and low-dose chemo once a week.

11. Regarding alternative treatments I have tried, they do not work. Contrary to popular belief, just believing you don’t have a chronic autoimmune disease will not cure you of it.

12. If I had to choose between an invisible illness or visible I would choose neither. Neither is good.

13. Regarding working and career, I’m bummed that life has dealt me this deck of cards. I cannot even fathom working a full time job any more. Part time would be pushing it too. I’m very thankful my husband is willing and able to support me (us).

14. People would be surprised to know I can be in pain at any moment during the day and the drug side effects stink almost (but not quite) as much as the disease itself. One of the worst aspects of having AS is the intense fatigue and fevers that render me useless when I’m in a flare.

15. The hardest thing to accept about my new reality has been having to rethink my plans about the rest of my life.

16. Something I never thought I could do with my illness that I did was: Go to the beach on a vacation, without too much hurting.

17. The commercials about my illness are nonexistent!

18. Something I really miss doing since I was diagnosed is being dependable and having people be able to count on me. I really miss Zumba too. My hips don’t work like that anymore!

19. It was really hard to have to give up my complete independence and ability to do whatever I wanted whenever I wanted.

20. A new hobby I have taken up since my diagnosis is blogging and photography.

21. If I could have one day of feeling normal again I would make plans and keep them! Thankfully I still have “new” normal days and I can do what I say I’m going to do.

22. My illness has taught me to keep a positive attitude no matter what the circumstances are and that having friends, family and neighbors to count on during flares is priceless!

23. Want to know a secret? One thing people say that gets under my skin is “it’s just stress” or “you’ll feel better soon” or “I have arthritis in my knuckle in my left hand” or “if you stopped eating starches (or whatever) you’d be fine” or “I had an aunt who had AS (or RA) and she’s fine now without any medicine” or “you felt fine yesterday, why not today?” or “a chiropractor could fix this”

24. But I love it when people help me with the boys when I’m having a flare.

25. My favorite motto, scripture, quote that gets me through tough times is, “Be still and know that I am God.” Psalms 46:10

26. When someone is diagnosed I’d like to tell them they’re not alone. Seek knowledge from informed sources and seek support for yourself from people who know what you’re going through.

27. Something that has surprised me about living with an illness is how there are so many incompetent and uncaring doctors out there. On the flip side too, there are some awesome and caring doctors out there too!

28. The nicest thing someone did for me when I wasn’t feeling well was to take care of the boys and let me rest. That means the world to me!

29. I’m involved with Invisible Illness Week because having this disease is tough and not many people know much about it.

30. The fact that you read this list makes me feel pleased that you now know more about what it’s like to live with an invisible illness.

 

To learn more about ankylosing spondylitis, visit http://www.mayoclinic.com/health/ankylosing-spondylitis/DS00483 . I love the Mayo Clinic’s new website!

Sarah