1. The illness I live with is: Endometriosis, Fibromyalgia, Interstitial Cystitis, Vaginismus, Vulvodynia, Systemic lupus erythematosus (SLE, Lupus), allergies, depression.

2. I was diagnosed with it in the year: Allergies – mid 1990’s (officially, though we’d talked with doctors about them earlier than that); Depression – 1999 or 2000; Endometriosis – 2005; Fibro, IC, Vaginismus, Vulvodynia – 2007; SLE/Lupus – 2008

3. But I had symptoms since: A lot of them have been since I was very young, the depression was when I was a teen… not even sure on the fibro and IC, they were hidden by the others.

4. The biggest adjustment I’ve had to make is: Ummm… so many adjustments… having to plan out even trips to the store and make sure I’ve covered the what ifs, because they’ll likely happen if I’m not ready. Wearing braces on my wrists (and sometimes other joints) when I have to drive more than a couple of miles (and even then I should be wearing them for driving). Not being able to just go places, either for errands or with friends.

5. Most people assume: that because I’m young and (mostly) look healthy I couldn’t possibly have as much pain as I do.

6. The hardest part about mornings are: … this is split into two parts… getting myself out of bed when I hurt, and managing to get myself some breakfast and something to drink so I can take my medications.

7. My favorite medical TV show is: Umm… I don’t have one lol! That’s one of the genres I just can’t seem to get in to.

8. A gadget I couldn’t live without is: Our laptop. When I’m stuck in bed or on the couch I have to have it because it is my link to the outside, and my friends and family help keep me from sinking into (worse) depression. It also provides excellent distractions in the forms of websites, forums, games and so on.

9. The hardest part about nights are: Not being able to sleep in one position all night very often, even with extra pillows and padding under and around me… I end up waking up to move at least two or three times a night, a lot of times I move more often than that.

10. Each day I take __ pills & vitamins. (No comments, please) Individual pills – Up to 14 or 16. Different meds/vitamins – 7 or 8

11. Regarding alternative treatments I: do a lot of research and have probably already heard of and looked at what you may be thinking to suggest. I appreciate the suggestions (as long as they are given with the right attitude… tellign me “This WILL cure you/stop your pain/take care of your symptoms” is the fastest way to get me to ignore you and blow off your advice), but don’t be upset or offended if I tell you that either I have tried it and it didn’t help, or I won’t try it because I’ve already looked into it. I do have a supplement I take when not pregnant to help my liver, and I will be possibly adding some other things into my treatments when I can safely add things again, but Johnny and I both do research, and I discuss things with my doctors before adding them, and I take research with me if it’s likely my doctors aren’t familiar with them, so we can make the best decisions for ME and MY HEALTH ISSUES.

12. If I had to choose between an invisible illness or visible I would choose: Visible

13. Regarding working and career: At this point just being a mom takes a lot out of me… I’m hoping to work at least parttime again, but full time is not an option, and part tiime is hard. If I can start working again it will definitely have to be something flexible that can be done out of our home.

14. People would be surprised to know: just how much has to be done for me some days that I can’t do on my own, vs just how much I do on my own some days.

15. The hardest thing to accept about my new reality has been: not being able to take care of everything I need, or the mental stuff…. there are days where I can’t communicate well at all because I’m unable to come up with words….

16. Something I never thought I could do with my illness that I did was: Be as happy in my life as I am. My life is hard, and I do deal with depression, but I am blessed and I have a wonderful family and wonderful friends and so many awesome things happening in my life…. even as depression touches it all and makes it hard to deal with, I am incredibly happy at the same time… which is an entirely weird feeling.

17. The commercials about my illness: Hmmm…. I know there are commercials out there, but I don’t have tv so I never see them. I know there is a great project out there called Could I have Lupus. I think fibromyalgia may have some commercials too? I’m not really sure.

18. Something I really miss doing since I was diagnosed is: being in the sun (at all) without it causing rashes, trouble sleeping, headaches, even easier sunburning than I’ve lived with all my life. I admit I’d been in the sun less and less leading up to my lupus becoming diagnosable… but the option was always there. Now I can’t even garden in the ground, it’s all got to be in flower pots and things that can be moved into the house or in the shade where I can care for them. :/

19. It was really hard to have to give up: being able to do what I want when I want to.

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

21. If I could have one day of feeling normal again I would: want to know ahead of time so I could travel to California and spend it at the beach with my family (my kids, Johnny, my sister(s- including inlaws) and my parents and cousins and aunts and uncles and grandmothers and whoever else) and and friends.

22. My illness has taught me: to be more patient with others (generally, still learning this one lol) because I don’t know what illness or other issue could be affecting them.

23. Want to know a secret? One thing people say that gets under my skin is: but you’re too young to have all those health issues. Lupus, endo, etc. don’t know ages. Actually… I take that back… pretty much everything I have is most likely to become active during reproductive years, and most likely to do so in women…. so they do know age… young ages. My age has both nothing and everything to do with my being so ill. Nothing because it doesn’t matter how young I am I do have these, and everything because I’m am in the age range that most of these things strike in (not counting allergies or depression)….

24. But I love it when people: give me hugs, ask how I’m doing, tell me I’m strong.

25. My favorite motto, scripture, quote that gets me through tough times is: If You’re going through Hell, keep on going.

26. When someone is diagnosed I’d like to tell them: They are not alone and it is possible to live with all of this. I also wish I could give them hugs. It’s a hard road, even if it is livable.

27. Something that has surprised me about living with an illness is: I can’t think of anything, because I’ve been ill my whole life, I just didn’t have names for most of it until my 20s. I guess it would be the validation that having names for these things would bring.

28. The nicest thing someone did for me when I wasn’t feeling well was: Hmmm… are we counting all the awesome care and spoilage I get from Johnny? When he’s able to he makes special meals for me, he brings home surprises from the store for me when he can, all the care he gives me with taking care of things I can’t do. Otherwise…. cards and gifts that have been sent, especially the ones that have been complete surprises.

29. I’m involved with Invisible Illness Week because: Well I haven’t been as involved as I’d have liked since I’ve been super busy with medical appointments this week (including traveling out of state to see one doctor because the closest one in state is at least 6 hours away)… but I’m taking part because these illnesses affect so many people, yet so few people outside of those of us affected and our close friends and family members know about them. We’ve GOT to raise awareness! And we need understanding from people!

30. The fact that you read this list makes me feel: so special and so appreciative. The fact you took the time to read this means the world to me.

To learn more about Invisible Illness Week visit this site. If you’d like to do this meme, the blank form can be found here, and please leave a comment at the bottom with a link to your post about it if it’s posted somewhere that you can do so (like a blog) so that everyone can read it!

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I’m not looking forward to Nov., Dec. or Jan….

Anniversaries in those months:

Nov.
Endo
Lupus

Dec.
Fibro
Vaginismus
Vulvar Vestibulitis
Lupus (confirmed by rheumy)

Jan.
Raynaud’s Phenomenon
Interstitial Cystitis

So all in all the last 4 years have not been kind to me in those months…. and that’s not even including the other issues I had during them… that’s just the diagnoses…. :/ I’ve also had 3 different surgeries spread throughout those months since I was 18. Two of them have been in January. So those are just not good months for me. :/