Wednesday, September 30, 2015

30 Things About My Invisible Illness You May Not Know

1. The illnesses I live with are: Rheumatoid Arthritis, Ehlers Danlos Syndrome, Sjogren's Syndrome, Adrenal Insufficiency, Gerd/Hiatal Hernia, IBS, Hypothyroidism, Raynaud's Syndrome, TMJ
2. I was diagnosed with it in the year: RA, 1972, EDS , 2014, Sjogren's 2002, Adrenal Insufficiency 2011, Gerd/Hiatal Hernia 2012, IBS 2014, Hypothyroidism 2001, Raynaud's Syndrome 2014, TMJ 1986
3. But I had symptoms since: In this case, I've had symptoms forever. They just change as the time goes on.
4. The biggest adjustment I’ve had to make is: adjusting over and over. Each new diagnosis brings new changes and adjustments. I've changed what I eat, moved my room to the first floor, I need to dress warmer (even in the summer), I take steroids and I have to makes sure I remain hydrated at all times, I wear more braces and I use more aids than I have ever used (wheelchair, knee walker, boot/cast, TENS, crutches).
5. Most people assume: that because I'm out of bed and smiling I must be ok, even if I am dragging a cast behind me and using a knee walker.
6. The hardest part about mornings are: for me, waking up. I'm dealing with hypersomnia right now and I seem to be sleeping my day away.
7. My favorite medical TV show is: I watch very little tv but I would have to say Dr. House. Is there a real Dr. House in the audience? I need a good doctor to fix what's broken, if only!
8. A gadget I couldn’t live without is: right now, my knee walker (recovering from foot surgery) when I'm done with that I would say my favorite gadgets are ice packs and my heating pad. They help when I need the pain to go away NOW!
9. The hardest part about nights are: being alone when you can't sleep. Sometimes it feels like you are the only one awake in the world.
10. Each day I take __ pills & vitamins. (No comments, please) I knew I wasn't going to want to know this, 30 pills a day and two injections a week.
11. Regarding alternative treatments I: have tried a lot of different things. I feel that conventional treatments are the way to go but I also think that vitamins, massage, meditation, acupuncture also has a place in the care of those with chronic pain.
12. If I had to choose between an invisible illness or visible I would choose: this year my disease has been more noticeable and yet the things that hurt the most are not noticeable. I'm kind of working things from both sides and I don't think either is better. At least I don't get dirty looks when we park in a handicap spot.
13. Regarding working and career: that stopped for me in '97. I advocate for awareness of my health issues and work with patients quite a bit. Still keeps my hand in but doesn't pay at all.
14. People would be surprised to know: you can have so many things wrong with you and still be a functional being. I owe a lot of that to a good pain management plan with my pain doctor. I'm hoping that situation doesn't change soon...
15. The hardest thing to accept about my new reality has been: adapting to my new reality. I hate to see my family go somewhere and get left behind, I'd love to take that trip to Disney too.
16. Something I never thought I could do with my illness that I did was: I'm still finding these things. My day to day reality continues to change quickly so sometimes when I'm able to walk I find new things. While I'm off my feet right now, I'm pretty much doing as little as I can.
17. The commercials about my illness: aren't even close. I know there are so many out there that can take an infusion or injection and be out there building a huge swingset or building a dollhouse or all the other things they show. For me the commercials that show a woman taking a walk are the ones that I identify with. My meds right now are working well but I'm not quite sure commercial well.
18. Something I really miss doing since I was diagnosed is: EXERCISE. My adrenal insufficiency has brought exercise intolerance with it and there for I can exercise about 15 minutes tops without feeling like I will pass out. Needless to say, I don't exercise much anymore...
19. It was really hard to have to give up: chewing. Sounds weird but with TMJ I spend more time not chewing than chewing lately. I'm sure you can imagine not being able to chew your food every day, you can't? Give it a try for 24 hours, it makes eating almost like sport...
20. A new hobby I have taken up since my diagnosis is: art. Coloring, drawing, learning to draw has interested me for quite some time. I've now found something easy enough for me to give it a try. It also helps immensely with my stress level and helps to relax me too.
21. If I could have one day of feeling normal again I would: Eat everything, Zipline, have sex, go for a walk and exercise. Sounds like a long day, wouldn't it just be nice to be tired from overplaying? 
22. My illness has taught me: that we can all have the same illness and yet all have different symptoms of said illness. There are as many different ways to treat each one of us and that no one copes the same way, and that's ok. Everyone is different, I'm not sure why that's hard to understand within the community.
23. Want to know a secret? One thing people say that gets under my skin is: you should feel lucky that you aren't worse off and you aren't positive enough. The first one completely negates what I have going on and why would you want to say that to someone (this was said to me by another patient). The second one you aren't positive enough (also said by a patient) I feel tells me that I'm not coping right. Maybe that doesn't work for others but I know what works for ME, please don't assume what works for you, works for everyone. I'm of the thought process if I don't feel my emotions and stuff them eventually I will just get to deal with them later. I'd rather deal now, figure it out and move on and let it go. That works for me, I don't assume to tell other people how they should deal and yet I'm constantly defending my way for me. Why is that?
24. But I love it when people: offer to help. We have very little help right now and have two people in my home that are supposed to be off their feet. When someone offers it is well received because we really need it.
25. My favorite motto, scripture, quote that gets me through tough times is: so simple "I can do this!" Probably not as fluffy as some other answers but it helps me know "ok, this is hard" and I validate that but hard or not it has to be done so lets do this thing.
26. When someone is diagnosed I’d like to tell them: find a support group. Online, face to face. This will be your lifeline, they will give you support, answer your questions and if you are lucky you will find a mentor that can help you through the first couple of months until things settle down and get a little easier to handle.
27. Something that has surprised me about living with an illness is: the reactions from friends and family. They will help for a short time and then assume you are good. They don't understand chronic illness lasts forever. I have lost most of my friends, because honestly who wants to talk about illness 24/7?
28. The nicest thing someone did for me when I wasn’t feeling well was: brought me a meal, sent me happy mail, took me out for coffee when I couldn't drive.
29. I’m involved with Invisible Illness Week because: I think it's important for people to know just because you can't see I have hardware all over inside my body doesn't mean I'm well. When people can see what's going on they get it, because they can't its much easier to act like it isn't happening.
30. The fact that you read this list makes me feel: like you care. You're interested, invested and engaged. Thank you!


Keith said...

How do I get in touch with you to discuss RA research?

Melissa said...

Thanks for thinking of me but my RA is well controlled with Actemra and mtx. After finally finding something that works well, I really don't want to mess with that. If you are willing to identify yourself I will pass your info on to some of my friends. Thanks!