Okay… let me start out by saying I didn’t realize just what a raw nerve this was with me until I read the response to this…and I will warn you this is a rant… This all can be found here… … Continue reading
well… Here I am… Restatis and my second dose. They come in “individual” use package s… 30 uses in a box… 2 boxes a month. The pharmacist said try to make one tube do both eyes and if there is any left in the package when you are done, throw it away (THROW AWAY $250 a month drops? HELLO!!!!). You put one drop (it ends up that it can be a BIG drop) in each eye.
The eye doctor said it usually burns (not like HIS drops burn… that is right away… these seem for me to be a slow burn that lasts about an hour… not an “ow ow ow” burn… more just like they are dry and tired anyway). He said it will take at least 3 to 6 months to work. That is a long time… but then I think that MTX took almost 9 months to get me here… so it really isn’t that long…
The adventure begins.
This week I’m thinking so much more about how all of this really IS invisible to most people (with the exception of anyone who actually stops by here…).
My mom thinks I need to be WAY more visible (since there aren’t a whole lot of people who stop by here) and take up motivational speaking. Maybe that is another door to look at…
Happy (I guess happy…) National Invisible Chronic Illness Week. Realizing that this is the week to make invisibility visible… I’ve been thinking about just how many people I know (or how many people I might know) who have invisible conditions. … Continue reading
This is National Invisible Chronic Illness Week… What don’t you know about MY chronic illness?
1. The illness I live with is: Rheumatoid Arthritis
2. I was diagnosed with it in the year: 2009
3. But I had symptoms since: 2008
4. The biggest adjustment I’ve had to make is: acknowledging that I have limitations
5. Most people assume: I’m whining
6. The hardest part about mornings are: eye drops and getting out of bed without wincing
7. My favorite medical TV show is: Beekman Boys (at least that is my favorite today!)
8. A gadget I couldn’t live without is: my brush. It is a dog brush that I bought for me because you hold it in the palm of your hand and you don’t have a brush handle
9. The hardest part about nights are: rolling over
10. Each day I take _6_ pills & vitamins. (No comments, please)… soon this will have eyedrops that burn and injections weekly… right now, I have 10 extra pills every friday night
11. Regarding alternative treatments I: take hot baths and rest… yoga when I can and meditation
12. If I had to choose between an invisible illness or visible I would choose: invisible
13. Regarding working and career: I work between 40 and 80 hours a week
14. People would be surprised to know: I walk half marathons
15. The hardest thing to accept about my new reality has been: mortality
16. Something I never thought I could do with my illness that I did was: walk a half marathon last February
17. The commercials about my illness: annoy me. There is one. It is for a very expensive self injectable that insurance doesn’t actually pay for most of the time (oh joy)
18. Something I really miss doing since I was diagnosed is: not thinking about what I wear on my feet. I haven’t been able to wear my good cowboy boots in almost 2 years
19. It was really hard to have to give up: the freedom of making some choices
20. A new hobby I have taken up since my diagnosis is: blogging more reliably
21. If I could have one day of feeling normal again I would: run
22. My illness has taught me: that I am mortal and that there are a lot of people who are invisible like me
23. Want to know a secret? One thing people say that gets under my skin is: OH I would SO apply for disability if I were you
24. But I love it when people: just talk to me like I’m normal. Last Rheumy visit this little guy spent my whole wait time talking to me about the office paintings and books and my nook.
25. My favorite motto, scripture, quote that gets me through tough times is: it doesn’t matter if you think you can or you think you can’t you are usually right.
26. When someone is diagnosed I’d like to tell them: your life isn’t over, it’s just that a different chapter is starting.
27. Something that has surprised me about living with an illness is: I can learn to not puke when I really feel like puking.
28. The nicest thing someone did for me when I wasn’t feeling well was: a gentle hug
29. I’m involved with Invisible Illness Week because: it matters
30. The fact that you read this list makes me feel: sad that you had to, but happy that maybe you will find some hope in your day.
Consider it… who around you, every day, may have an invisible illness? Fibro? RA? Epilepsy? Depression?