Lupus Never Looked So Good

1. The illness I live with is: Lupus (SLE), Rheumatoid Arthritis, Raynaud’s Phenomenon, Post-Traumatic Stress Disorder (PTSD)

2. I was diagnosed with it in the year: Lupus, RA, RP: 2002-2003; PTSD: 2008

3. But I had symptoms since: Med: 2001, Psych: 2007

4. The biggest adjustment I’ve had to make is: Caring about what I eat or do.  I’m still not very good at it, being that not long ago I went on a 8 hour hike with bad shoes and no water.  I paid for it, dearly.

5. Most people assume: Well, honestly, I don’t think anyone assumes anything is wrong with me.  But I am very upfront about my illnesses especially in an environment where they are going to affect me (i.e. hiking up a mountain).

6. The hardest part about mornings are: The sober hangover.  When I ate well and drank plenty of water the day before, but for some reason I wake up feeling like I drank a bottle of tequila to my face.  

7. My favorite medical TV show is: I don’t like medical dramas.  I think they are completely tacky, and so unbelievably inaccurate that they are infuriating.  And most of them portray nurses and doctors in a way that is exactly the opposite of true (especially in hospital settings).  It’s too frustrating for me to watch and enjoy.  However, scrubs was pretty brilliant.  But that wasn’t a medical “drama”.

8. A gadget I couldn’t live without is: my phone, probably.  

9. The hardest part about nights are: It depends.  I get RLS many nights and that sucks, but really nights are typically my best time of day.  I look forward to laying down.

10. Each day I take __ pills & vitamins. (No comments, please) I currently take 7 pills each day (well, technically one of them is a powder)

11. Regarding alternative treatments I:  have been almost entirely holistically treated since my diagnosis, and I have been healthier than most of the people I have met with the same or similar diagnoses who are treated primarily with chemical medicine (steroid, radiation).  My thoughts on this, to specify, are that in many cases mainstream medicine is the best resort, BUT in a case like mine, where the drugs typically prescribed have *more negative side effects than they have benefits*, natural medicine is the way to go.  (Disclaimer:  I am NOT including “Homeopathic Medicine” in my blanket term of Holistic medicine.  ”Homeopathic Medicine” ought to be illegal, and is in no way shape or form “medicinal”.  

12. If I had to choose between an invisible illness or visible I would choose: Well it depends on which illness I’m switching out with.  Am I switching my Lupus/RA with something that just barely alters my appearance but has far less symtpoms?  Fuck yeah!  But am I switching it out for crippling crooked bones or something?  No, of course not.  Honestly, I like having an invisible illness (which appears to be the unpopular opinion).  I like that people don’t look at me and assume I can’t do something.  If I choose to disclose that information, I will!

13. Regarding working and career: I go back and forth with this.  I want to have a career as a social worker specializing in developmental disabilities, but I also want to have a more “domestic” career.  Perhaps I will figure out a way to combine the two.  

14. People would be surprised to know: That I would trade in to make my Lupus way way worse if I could make my anxiety issues disappear forever.  That shit is WAY worse imho to deal with.

15. The hardest thing to accept about my new reality has been: Honestly it was way harder when I was in high school, and I had to change my diet around completely.  But that was when my health was at it’s worst, for being sick for a year or so before getting diagnosed.  Since getting diagnosed, I have gotten more and more situated into my groove with things.

16. Something I never thought I could do with my illness that I did was: Help others!  Spread awareness, and give advice!  

17. The commercials about my illness: You know, the only Lupus ads I ever see are billboards that say shit like “tired sometimes?  are you a black person?  You probably have Lupus!”  Which is just a fear-mongering ad that does nothing.  And all the RA ads I see are about old people who wish they could play tennis again.  I don’t relate at all to those campaigns.

18. Something I really miss doing since I was diagnosed is: Honestly, I was like…13 before I got sick.  I wasn’t even a real person back then.  As far as I’m concerned, I’ve been sick since I mattered.

19. It was really hard to have to give up: I had to give up eating all wheat products for a few years.  That sucked a lot.

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

21. If I could have one day of feeling normal again I would: go on another hike in shitty shoes.

22. My illness has taught me: That I’m pretty tough.  (When I want to be)

23. Want to know a secret? One thing people say that gets under my skin is: When people who are sick have claim to this elitist throne that gives them license to whine constantly and put “healthy” people down just for “not understanding their pain enough.”

24. But I love it when people: ask questions!!  I love getting asked real questions about chronic illness.

25. My favorite motto, scripture, quote that gets me through tough times is: ”I’m always ok, even when I’m not.”

26. When someone is diagnosed I’d like to tell them: TO NOT TAKE EVERYTHING YOUR DOCTOR SAYS AS COMPLETE FACT.  Do your own research, ask questions, get second, third opinions.  Be smart. 

27. Something that has surprised me about living with an illness is: When people ask “How are you?” They really don’t want to know. (seconded)

28. The nicest thing someone did for me when I wasn’t feeling well was: Scratch my back when my day was shitty.  It erases all my problems.

29. I’m involved with Invisible Illness Week because: Well technically I missed it.  Whoops!

30. The fact that you read this list makes me feel: Super happy and grateful!  Thanks!