Soooooooooooooo….. Here I am… Thinking that since I have to get up way way early to get my butt to work in the morning, I should try to sleep. Sleep isn’t likely. I’m totally stressing… and I’m not sure if … Continue reading
Sometimes I feel really goofy (the silliness not the dog) because I am terminally early. There is a wonderful member of my family who made me his way although she doesn’t know it. She is ALWAYS late and I am determined to not be her. So I ended up at my dr appointment half an hour early.
From the balcony of the still locked office I saw this bridge. It is nothing more or less than a knee high railing on a wooden walkway over a drainage ditch but it was just what I needed to help center and ground myself ths morning.
Sometimes I don’t feel so goofy for being early…
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Up early. Well… Early for “normal” people, but normal is highly over rated. I can’t figure out how to get interested in much of anything this morning. Games hold my interest for about five minutes. Demanding little fuggle dog holds it a bit longer because frankly the mood I’m in means the comfort is very welcome.
Today (early appointment) I am going to see yet another doctor in my new favorite orthopedist office. They did great with my back. They are honest with Amandya about her knee. And Dr Booth is all for them and has worked with the group. Add to that the fact that I’ve met my magic deductible number and my extremely limited range of motion in my “boo boo” wrist… And… I’m going to see if there is anything this guy can do to help me.
I figure I will end up needing an MRI to get any real diagnosis and any real advice. That will probably have to wait till Friday, but the ball starts rolling today.
I feel a lot like Ebenezer Scrooge facing the spirit of Christmas Yet To Come… Of all the doctors offices I have been sitting in for me or my babies… This i the one I dread most. I’m scared that he will tell me there is nothing he can do to help. I’m even more scared that he will tell me that he can and it will mean surgery again.
People say that the pain of birth weakens in your mind. They are right. The pain of having my arm fixed each and every time is bright and real in my mind and it totally doesn’t wane. I want it to be fixed, I think, but the fear of facing that pain again deliberately scares the crap out of me.
Wish me luck guys… And have a great Monday…
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Okay… Okay… I’m listening. Honest… I am. Today I got an email from YummyMummy Club, my Epilepsy article is being published in this month’s issue of the Yummy Mummy Club Newsletter… my article is Epilepsy Doesn’t Just Happen to Other … Continue reading
Another year, Another chance to take stock and think about my Invisible Illness…
1. The illness I live with is: Rheumatoid Arthritis, Raynaud’s Syndrome, Sjögren’s Syndrome
2. I was diagnosed with it in the year: 2009
3. But I had symptoms since: 2007
4. The biggest adjustment I’ve had to make is: remembering that a compromised immune system means I have to think about everything I do, ABSOLUTELY everything… I can’t buy a glass of lemonade from the kid down the street without thinking about what germies might be flying around the drink, the cups, the hands of the little one. What can I catch from the can of pop I would love to drink? What can I catch from riding the elevator? Hand Sanitize is my best friend. It isn’t fair.
5. Most people assume: I’m fine, I’m imagining things, their condition is way worse than what I may have, that if I take an advil I will be okay.
6. The hardest part about mornings are: having to take stock of how I’m feeling and determine what outfit will hurt the least putting it on
7. My favorite medical TV show is: anything on discovery fit and health
8. A gadget I couldn’t live without is: my iPad
9. The hardest part about nights are: finding a position that will let me sleep
10. Each day I take __ pills & vitamins. (No comments, please) 12 (plus two shots a week in the stomach)
11. Regarding alternative treatments I: have tried many, and I know many don’t work
12. If I had to choose between an invisible illness or visible I would choose: invisible, sometimes anonymity has its advantages…
13. Regarding working and career: some days are awful, some days not so bad. Sometimes standing up after sitting for a few hours makes the pain an 11…
14. People would be surprised to know: that even though I’m pretty much controlled, it will hurt for the rest of my life to some degree
15. The hardest thing to accept about my new reality has been: accepting that I have limitations.
16. Something I never thought I could do with my illness that I did was: walk a half marathon very fast
17. The commercials about my illness: PISS me off. I don’t mind being reminded of it, but don’t make it sound like either I can’t do anything or that if I just take your drug I will be able to spend 50 hours a week on the stair-master with a perky little smile.
18. Something I really miss doing since I was diagnosed is: Not having to think about what I could catch from whatever it is I’m doing.
19. It was really hard to have to give up: the concept that I’m okay and I will be okay
20. A new hobby I have taken up since my diagnosis is: Telling people about the fact that it totally sometimes sucks to have RA, but life is livable and you CAN do something, even the small things, to make yourself smile.
21. If I could have one day of feeling normal again I would: go to Disney, carry everything I want to carry, and walk all day long without thinking about how bad my feet and hips and ankles are hurting
22. My illness has taught me: that I have limitations
23. Want to know a secret? One thing people say that gets under my skin is: Oh yeah, my grandma has Arthritis too. Have you tried Advil/tylenol/excedrin/aleve? NO… you know what, I never ever THOUGHT to try pain meds to try to push the pain and lumps and bumps back into the background. THANK you for enlightening me…
24. But I love it when people: ask, talk, smile, and even gentle hugs
25. My favorite motto, scripture, quote that gets me through tough times is:
It isn’t good, it isn’t bad, it is just different
and…
Be The Best of Whatever You Are
Poet: Douglas Malloch
If you can’t be a pine on the top of the hill,
Be a scrub in the valley-but be
The best little scrub by the side of the rill;
Be a bush if you can’t be a tree.
If you can’t be a bush be a bit of the grass,
And some highway happier make;
If you can’t be a muskie then just be a bass-
But the liveliest bass in the lake!
We can’t all be captains, we’ve got to be crew,
There’s something for all of us here,
There’s big work to do, and there’s lesser to do,
And the task you must do is the near.
If you can’t be a highway then just be a trail,
If you can’t be the sun be a star;
It isn’t by size that you win or you fail-
Be the best of whatever you are!
26. When someone is diagnosed I’d like to tell them: your life isn’t over… some days suck, some days are beautiful. Live in the beautiful and carry those days into the days that suck.
27. Something that has surprised me about living with an illness is: I can do it…
28. The nicest thing someone did for me when I wasn’t feeling well was: a hug and a cup of tea
29. I’m involved with Invisible Illness Week because: I have one, I life one, WAY more people live with it than anyone realizes… and it matters
30. The fact that you read this list makes me feel: grateful, hopeful, like I may have accomplished something….
When I go to the doctor she always asks me to quantify my pain level on a scale of 1 to 10. I’m getting use to this scale and use it frequently with my kids to judge how crappy They are feeling.
Just lately however I have started to think of pain more in terms of colors than numbers. While attributing colors to pain doesn’t lend itself as well to quantification… it allows for much greater accuracy in qualification.
Sometimes it is dark gray…. when it is there but aches more than hurts.
When I flare it can be bright green… blaze orange…. or lemon yellow.
My hip has been starting to act really stupid. If I sit for more than an hour and stand up… the pain is a bright shiny silver in bright sunshine. …
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When I was a kid, many many many many moons ago (well… okay… that might be overkill… but hey…) coffee always came out of a jar. Usually the cheapest jar anyone could find and taste (enjoying the coffee) wasn’t actually … Continue reading
My insurance company is being EVER so helpful now. I find it kind of irritating that they are so helpful now… they are helpful to the point of being pushy. They called Saturday. Left voice mail. Hi this is <insert name> registered nurse with your insurance company. You have a free thing that we are going to MAKE you take advantage of. We are going to continue to call and leave you voicemail until you cave in and talk to us and accept our “help”.
Why are they SO concerned? Lower back pain. I went to the doctor for leg weakness and found out that I had herniated disk and back arthritis. I got the herniated disk taken care of (cortisone shots are wonderful) and now I don’t have weakness anymore. I still have pain sometimes but hot water and anti-inflamitories seem to help most of the time… occasionally a Tramadol if it is too ouchy.
Nurse who I was made to talk to said that I’m doing all the cool things I’m supposed to. Yoga class once a week, three days a week home practice… cooling gels when muscles are complaining… all the things that dr and therapist said to do… so now I’m going to have the nurse and their help inflicted upon me.
Thank you so much.
Where were you people when I was fighting with the pain of RA when it set in? Really. I couldn’t bear weight on the balls of me feet, my knee wouldn’t let me move, my knuckles were giving me the one, two (three, four, five, six, seven) punch and my wrists were bithcy. Where were you when I needed you people? I guess back is scary, forever doesn’t really matter so much.
On the plus side, I can dig through their hidden library now just in case.
Posted in back issues, back problems
I’m going to watch this all day… I know most people who accidentally stumble here already know about him… but THIS is an awesome REAL description of what it means to have RA…
Suffice it to say, I’m not your ‘typical’ 40 something. I was sitting listening to the Cars soundtrack and decided that one song was talking to me… a lot… and the lyrics have nothing at all to do with finding … 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 