Category Archives: rheumatoid arthritis

Share Your Favorite Rheumatoid Arthritis Activists & Resources with WEGO Health!

Well… I’ve gone and become an activist…

 

For those of you who aren’t familiar with WEGO Health, they’re a different kind of social media company – with a mission to empower the top 10% of online health social media contributors to connect with one another and with healthcare companies.  They call those folks Health Activists – but they’re people like me and you who are community leaders, bloggers, on Facebook, on Twitter, leading online forums, and usually “all of the above.”

 

As part of their mission, WEGO Health has recently launched a new Health Activist video platform called WEGOHealth.tv where they are presenting the authentic voice of the online community in the form of Health Activist-created videos and resources.
Right now, they’re working on a Rheumatoid Arthritis Channel and they’ve asked for my thoughts on resources and video ideas.  I wanted to make sure that all of you had a chance to weigh in as well so I hope you’ll take a minute and let them know what you’d like to see on the channel!  You can share your resources and ideas (or just sign up to get notified when the channel launches!) here: WEGOHealth.tv Rheumatoid Arthritis Channel.

 

By sharing our favorite resources and tools, we’ll help to make this new Channel as valuable as possible.

30 Things About My Invisible Illness You May Not Know

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….

RA guy has an awesome post

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…

Early Morning Quiet and RA Being a Blessing

Yesterday (at least yesterday morning) was a really bad time.  It really was… Everything came crashing down around my ears and all I wanted to do was cry.  Sometimes I forget things like… Dr Booth was incredibly impressed with how well my back shots did to improve my leg weakness in less than a week and how well my joints are doing on ebrel, even when I hadn’t taken it for three weeks.  I’m down to 6 involved joints.. the base of two toes on each foot and two knuckles on my right hand.  Knowing that there are things that are beyond my control that I want desperately to control in the lives of people who matter makes me feel very helpless sometimes.

Usually I can shake it off.

Not yesterday.  Yesterday was just one of those days when I just wanted to cry… and I did.

This morning, it isn’t quite so bad.  Actually, this morning I can start to wrap my mind around reality again.  This is a good thing.

I got up this morning ready to squeeze my farmville animals and trees and my cityville buildings and fields and boats… ready for a cup of coffee and to take on the world.

I had a wonderful conversation with my cousin many miles away via text messages.  I could picture him sitting listening to his rain and drinking his coffee half a country away.  Made me smile, made me homesick, made me feel like I got a virtual hug.  Thanks Andy.  I needed it.  Enjoy both your coffee and your rain.  In fact, enjoy your rain just a little bit for me too.

The other thing I did this morning was that I read the responses to a post I added to RA Warrior’s wall on facebook last night.  People there reminded me that, while RA kind of sucks.  Okay, okay… RA sucks rocks on a good day… and on a bad day… well… but it has given me perspective that I can use to support my peeps… even extending “my peeps” to include special people I’m meeting all over the world.

I am currently 17 months down my diagnosis trail.  I am over most of the “this isn’t fair”, the “why me”, the “no no no no no no”… and with the assistance of really interesting medicine, back to feeling way more like me again.  I’m planning on going to the gym today with a lady from work at lunch time again!  I’ve gotten my head around my reality.  I’ve gotten to the point where I’m thinking that I can actually help people deal with their new reality from a personal point of view.

That is a good thing.  Because suddenly it matters very much that I can be strong to be leaned on during a newly nearly officially diagnosed peep.  I can do this.

I don’t want to have to do this

but I can do this.

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Herniated Disk Adventure

Okay, okay, so this morning I can look on it as an adventure.  I’m still a little scared, but not as badly. It turns out that really awesome Rheumy’s know really awesome Orthopedists… Dr Lutz was awesome.  He was honest … Continue reading

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Fear Bites

I have so fallen short of the whole post a day thing.  Life has managed to bitch slap me and I am SO not taking it well. It has been almost 2 weeks since I went to visit my rheumy … Continue reading

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Out Of The Shadows and In Your Face…

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

What Not To Wear

I will admit it, I watch Clinton and Stacy on TLC’s What Not To Wear.  I have a dream that someone will help me to get out of the fashion mess that I am and give me advice on how to buy clothes that I don’t have to cringe when I think about putting them on.  Clothes that make me look more professional and less “lame” (there are days when I feel that way not only figuratively, but literally.

I would love to see someone who has something in their situation that causes shopping and wearing things that look good to be more difficult.

I want to learn how I can style my thinner and thinner hair.

What shoes can I buy that don’t look like Herman Munster shoes and that aren’t the dreaded running shoes that are comfortable flare or no flare.

What pants can I reliably wear that look like they are not “mom” pants or “man” pants?

What shirts can I wear that don’t make me look fatter and fatter but that don’t have teeny tiny  buttons that I can’t fasten?

I don’t even care if I can get the MAGICAL $5000 clothing card… I just want to learn what to do and how to wear something other than elastic pull on pants and t-shirts.

There are a lot of us out here who would love to see someone “like us” to emulate.

Come On TLC.  We want to know too…

Coming Clean

Okay, okay, I’ve been pretty quiet (for me, that sometimes seems like a miracle… being quiet for any extended period of time…) for a bit.

Truth be told, my leg has been giving me some problems.  Okay… it has been beating the crap out of me.  I’m not sure why, and I’m not totally sure how, but something is definitely weird.

My left leg is being stupid.  Bear and I went for an 11 mile walk last Friday.  I got a couple wicked cool shirts at the sporting goods store… obscenely expensive but they are what I got in celebration of actually getting a bonus at work.  It was damp and chilly and my hip was kind of achey.  Not horrible, just kind of… I knew it was achey.  It was causing (well… I thought it was causing… ) me to walk with an odd limp.

The walk was great.  It was awesome.  We stopped at the library, went to the sporting goods store, investigated town, and had a good time.  On the way home, we stopped for lunch at the diner that we used to eat at on my work from home days.  It was a wonderful day.

By the time I got home, I was tired… it was 11 miles… I was tired and feeling kind of stiff but not anything awful.  It got worse.  By Saturday I was NOTICEABLY liming… badly.  I was actually thinking that I might really really want to go find Adam’s artsy fartsy cane and actually use it (even thought it is meant to be a decoration not a real cane…).  Hot baths… Blue over the counter pain relievers… Tiger Balm (the balm and the patches)… Vicki’s Boo Boo salve (I hope she has more of that, I want to order some… )… rest… Sunday wasn’t quite as bad until evening and by then it was starting to be really bad again…

Monday I was starting to feel human.  Not great, but able to walk and able to navigate without noticeable limp.  Tuesday it didn’t hurt.  YAY… it didn’t hurt.

Wasn’t OVERLY willing to whine.  I don’t want to dwell on the badness when the badness is there.  Sometimes it is there.  This time I was really wondering if I will end up riding in one of those Hover Rounds or walking with a walker or… what.  It was hard to deal with.  Reality, frequently, sucks.

But now something new has been added.

My right foot walks “right”.. “correctly”.. my foot stays turned in the right direction and it doesn’t “work” right.  I think this is worth a call to my Rheumy…

On the up side, I’m not itchy or rashy!

Being Gentle With Yourself

I was reading through some RA places (blogs, medical sites, general… stuff) this morning and thinking, at the same time, about some advice I gave someone I met on facebook (who said social networking and general game playing don’t have any side benefits…) who is new to the “adventure” (sarcasm implied) of rheumatoid arthritis.

This young woman has a young son who has epilepsy (again… go go social networking…) which is again how we started to interact.  She is going (hopefully) to see her arthritis doctor (not sure if it is a rheumy or not) soon, but was having an incredibly horrible flare last week.  She asked what she can do for the pain.

I gave her all of the tricks I’ve found (over the counter NSAIDs… hot bath… slink to keep weight off the painful shoulder… use other joints where you can, like open bottom cupboards with feet and shut doors with hip if it is shoulder-elbow-hand pain… oh… and… um… yeah… I had a package of metho-prednisone that the clinic prescribed for sore throat a while ago that I didn’t take many of, you know the ones, the blister packs that have the dosage on the back, if I get really really bad, I take a couple doses of that to try and take the edge off).  Yeah yeah, I know… but technically it was my prescription I was taking and  it isn’t like I haven’t been given the magic prednisone pills before.  There are times that you do what you have to do to keep from living the chewing glass kind of pain.

One of the best pieces of advice, though, that I think I gave her (and advice that I probably ought to take myself more often) is to be gentle with yourself, be understanding of yourself, and don’t just let people help if they offer, ask for help.

So that was the avenue I took down the… I’m up early, it is blissfully quiet but for the wind and the trains, I have warm coffee with cream, and I’m looking for research to help me with my RA book… rabbit trail.  I found some interesting takes on my theme.  Some make me cringe (especially given that my hip hurts about a 9.5 this morning from the change in weather) but in general they were good reads.

The Allegheny Medical Blog has some great suggestions, but not really if you are in the middle of the chew glass kind of pain… and most of it is kind of common sense, this is what will make you healthy, wealthy and wise kind of suggestions.  I always like to be reminded that stretching and gentle yoga can help and mindfulness of my own limitations lets me do this even when it hurts really bad and sometimes helps, but that isn’t something to actually take up when you are in the middle of “what the #@$$ can I do for this pain” kind of day.  And actually the 7 Fibromyalgia Coping Tips entry was more helpful and kind of more accurate.

I think, though, that one of the best pieces of advice is from Rheumatoid Arthritis Guy… Asking For Help Does Not Mean Giving In.  I guess it isn’t just a girl thing that says… I’m going to tough it out.. I’m not  asking for help, they should know I need help… or… I do NOT need help.  Let’s face it world, we all need help.  Don’t be afraid to accept it.  Don’t be afraid to ask for it.  I absolutely love RA Guy’s blog.  It is real.  It is honest.  It makes me have faith that I can do it even on my crappiest day.

And damn it, it isn’t just about RA, but every freaking thing in life.  Get over yourself.  Help someone, even if you don’t realize they need it.  Offering makes the heart smile.