THIS sentiment is usually something that goes through my mind when I’m having a rough day… Thank you Dory you natural blue fish… it helps. Today though, the sentiment was because we went swimming. Squirrel, Skinny Butt and I went … 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?
I’ve been digging this morning. It is pager week, so we aren’t walking… it is going to get too hot too soon and I have to carry a heavy laptop and its power cord along with the pager and cell phone. So I’m taking the opportunity to dig into what Dr Stephanie and Dr B (the optometrist) have been talking to me about this week.
The MTX needles aren’t as big as the flu shot needles (got mine yesterday) and even with the cost of the MTX meds, it is cheaper than paying to park at the dr office along with the gas and wear and tear… so… I’m going to suck it up and do it for myself.
The eye doctor said that the Epithelial Basement Membrane Dystrophy (EBMD) is actually getting a little worse. The erosion on my left eye is about twice as big but not yet interfering with anything, so that is good. He is all for the Restasis drops… twice a day. He asked me what the chances are of my changing careers. Really? I enjoy what I do and I don’t know what else to do other than be me. I don’t know if I could change careers. Add in that I have reasonably decent insurance (if they do make some silly rules on some thing) and we are more and more relying on that insurance. Pretty sure I won’t be changing any time soon…
So what have I learned this morning…
What is Epithelial Basement Membrane Dystrophy (EBMD)?
Epithelial Basement Membrane Dystrophy (EBMD) is a genetically influenced abnormality, which causes small islands of the corneas surface (epithelium) to improperly bond to the underlying tissue. Similar to newly laid sod, these islands of unstable tissue are susceptible to frequent erosions. Although not typically sight threatening, corneal erosions can be a chronic problem. They may alter the cornea’s normal curvature, causing periodic blurred vision. They may also expose the nerve endings that line the tissue, resulting in moderate to severe pain lasting as long as several days. Generally, the pain will be worse on awakening in the morning, or during the night. Other symptoms include sensitivity to light, excessive tearing, and foreign body sensation in the eye.
Between this and my Sjögren’s Syndrome… what am I supposed to do other than the Restatis? I have this cool Dry Eye Treatment paper…
Stop using Visine or other get the red out kind of drops
Drink enough water (he freaked when I told him I was drinking about 3 quarts of water a day… he told me to divide my weight by 2 and that is how many oz to drink, I shouldn’t be drinking so much!!!… hm… that is about 2.9 quarts a day… damn… I have to measure like 2 oz less a day… really? dork… )
Take regular computer breaks (LOL LOL LOL LOL LOL… okay)
avoid air blowing into your face
avoid ceiling fans even when sleeping
consider a room humidifier
evaluate your meds for dry eye side effects
use artificial tears 2 – 6 times a day
take oral supplements (omega 3 fatty acids, fish oil, 1000 mg 3 times a day)
use artificial tears oinrment at bedtime (gues he was never on pager patrol!)
start lid hygiene (LID hygiene? huh?)
use restatis
be fit with punctal plugs (yeah… not so much)
So… the next chapter of the adventure commences…
This gallery contains 6 photos.
Tuesday Hermine blew through. It dumped 15 inches of rain on the West side of town and the next town up. East side (our side) it only dumped 6 inches of rain. This first picture is the big grassy field … Continue reading
Positivity… One of my favorite quotes is “Whether you think that you can, or that you can‘t, you are usually right.” Henry Ford. Another, I don’t know where it came from (everything I can find says anonymous) is Attitude Determines … Continue reading
Okay… I shouldn’t let this bother me… I know I shouldn’t… but it has been a long enough day already… and a bad enough couple weeks… that rude people are just bugging the crap out of me.
I’m sitting outside of the rheumy’s office waiting for it to be 1:30 when they unlock the doors. In the chair across the hall way also waiting on the same office (all rheumy all the time) are two PLEASANT Hispanic women (mom and daughter) who don’t think any gringo chicks could possibly understand what they were saying decided that I was THE most hilarious thing on the planet. I am not your "typical" chick (had that discussion this morning when one of the guys from work was hunting nail polish remover to take tar off of his fingers). I don’t really usually care a lot what people think of me (although there are days…).
Today was a not so great day. With the rain from Hermine coming in waves and dealing with the challenges of traffic and flooded roads. With the finding out that storage subsystems don’t like getting dripped on from a leaky roof. With the hunch that I would find out that I really would have Sjögren’s Syndrome and the knowledge that the fluid retention in my ankles, knees and knuckles isn’t going away as fast as it should have and that would mean self injected methotrexate in the VERY near future…
I really didn’t feel like watching two middle aged plus women nearly roll on the floor because I didn’t meet with their delicate sensibilities. I felt better when a doctor from down the hall stopped to talk to me about my Vebrams. That made me feel less like a freak show… but it still didn’t help a whole lot. I didn’t do anything other than cross my legs that allowed them to notice that I had on my lilac colored shoes. I didn’t make fun of them for speaking spanish. I didn’t make fun of the way they walked. I honestly figured that I was as good as either of them were and that we all were in the same boat (waiting outside of the rheumy office… duh)…
Turned out all of my worries were right. Next week I start injections of methotrexate. I have to go to the optometrist for my eyes and will probably be on resatis. with any luck the remaining 14 joints will behave better and my eyes won’t hurt.
wish me luck…
Posted in rheumatoid arthritis
The day of my Dr appointment is finally here. It seems like i haven’t seen her forever (forever enough that she should have had her baby by now and she was barely showing when I saw her last).
I have several questions today…
barefeet walking
should I be worried about my dry burning eyes or just keep taking the artificial tears several times a day
is it normal to be thirsty most of the time and I know that it isn’t diabetes… PCP tests for that
Are my toes and ankles still swelly (because they are still way way sore in the mornings… more sore than my wrists and fingers even at this Hermine kind of morning/day/week… and they are still that way every morning)
How do I get my MTX shots if I’m for some reason not in town (in case I go for training or something and I’m not here if she happens to decide that I will benefit more from injections… because gotta love the stupid insurance company saying I need to have the shots in the doctor’s office)…
I think, this morning, the biggest question I have is why my eyes are getting more and more dry and burning. There are almost no allergens in the air (especially the last two days when it has been raining so much) and they hurt all day. If all it is is that they are dry and burny and all I need to do is the artificial tears drops, hey… that’s cool… I can do that. But I really want to rule out anything else.
I always get way nervous about the doctor appointments. I dread that they are going to tell me that something else is going on and that I will have more issues. 12 hours from now, I will be more sure…
Posted in rheumatoid arthritis
This gallery contains 1 photos.
They’re Here!!!! Woohoo! And they are Epilepsy Awareness Purple!!! I’m so psyched that my Vebram’s FiveFingers came today. They are going to take a little bit of time to get used to them… but wow do they feel awesome. Just … Continue reading
This gallery contains 5 photos.
I’m thrilled that even the minor change in temperature. We made the most of the respite by taking our Sunday walk again. It was great. Keep in mind… the respite is relative. It was “only” in the mid 70s when … Continue reading
Lots of quality Rheumatoid Arthritis Information from RA Warrior.
You are not alone
Together, we can enlighten the world
A Figment Of Fitness 