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Docs playin peek-a-boo with diagnoses

Docs playin peek-a-boo with diagnoses

I have some good news-(drumroll please) I finally got Medicare ( woo hoo!!!!)!!!  I went 3 years with no insurance after I lost my job.  The amount of money I owe for medical bills is astronomical.  I think I can safely say that my credit isn’t credible anymore. No one will be giving me any loans in this lifetime, ha!  Good thing I have The Big C.  I told him if he tries to leave me I’m grabbing on to his ankles and he’ll have to try and run with me holding on.

Anyway, back to the Medicare.  My primary care doc has given me a referral to be seen at the big state teaching hospital.  Yeeeee hoooooooo!!!!!  I finally have some kind of coverage that gets me in the door.  I am so happy.  For the past 3 1/2  years I’ve had doctors scratching their collective academic heads and going hmmm.  Then I get a diagnosis, and I get it taken away.  Peek-a-boo! It’s here and then it’s gone…  The only one that hasn’t been taken away is the small fiber neuropathy.  That’s because I had a biopsy and they could actually see it and diagnose it.  It sucks that so many autoimmune diseases don’t have one clear test.  It’s more of a symptom game and then you have to have a rheumatologist who’s willing to put their neck out and actually diagnose you before the average 6 to 11 year time-frame.  As soon as I told my rheumy that I was going to be seen at the teaching hospital, he backpedaled on the Still’s and dermatomyositis.  Even though I have the rashes and skin issues that go hand in hand with each and solid bloodwork.  I just can’t wait to be seen at this hospital, I’ve been too sick for too long.  I’m going to be seen in the rheumatology clinic but was assured that they would take a team approach on me and try and figure out what’s causing my Cushing’s and chronic edema before I explode.  It wouldn’t be pretty that’s for sure.  I am flaring with my RA right now ( I mean UCTD again) so I’m in a lot of pain in all of my joints and it makes it worse from my hips down because of all of the water pushing the bones in my feet apart and the pressure in my knees.  As me and C would say, Oy! My pancreas! It’s what we say when we realize that either one of us is going on and on and on about body parts.  It means, shut up, you sound like one of those  people that like to tell you all about all of their aches and pains when you say hello.  If you could feel your pancreas hurting, your pretty much hurting everywhere.

Change of subject: Here’s kind of a happy thing, for me anyway-  I finally got Photoshop elements 8!!!!  I am a digi scrappin fool I tell ya!!! I also got a few new kits from a wonderful designer and friend.  And, I bought My Memories Suite. Yeah!!!  That’s where I’ve been spending my free time lately.  I am hooked. I could spend days just cruisin the online shops for kits, actions, or just elements.  But-I don’t have much free time, or not as much as I would like that is.

The other day I was searching for the video camera.  Our house is a little ‘cluttered’ now that I’m on a break from housework, ha!  I was going through stacks of stuff in the corners of our family room and I found my bag of knitting.  I just stared at it and was like, oh wow.  When is the last time I’ve seen that bag and how did I ever have the time to knit??  I remember sitting on the loveseat upstairs at night and going through new patterns.  What life was this in?  I swear there aren’t enough hours in the day now.  And I’m home all day so I don’t get it.  It seems like I had more time when I was working full-time, but how can that be?  Maybe it’s like money.  The more you make the more you spend.  The more time you have the more you need.  I don’t know but I felt a little sad just thinking about it.

I’m off to check on some websites and figure out which ones I’m going to drop.  I have way too many social media sites and I’m thoroughly addicted to those too so this is going to be hard.  I know for sure I’m keeping my Christian women sites, all of my photography sites, and facebook.  The rest is going to be hard to choose.  I’m leaving you with a few shots from this time last year.  Right now we are having a cold spell (12 degrees at night brrr) and at this time last year we had this freak snow-then-ice storm that left us without power, freezing, and me taking a million shots of the ice.  Enjoy and until next time


Ice on Top
Ice on Top
Stuck in the Middle
Stuck in the Middle

no copy or use of photos allowed without express written consent from genius

, uh I mean blog author  🙂

Easter naps, fat legs, and Bowie

Easter naps, fat legs, and Bowie

.: Easter Eggies :.
Image by Warm ‘n Fuzzy via Flickr

I spent this Easter in bed, dozing off and on with the laptop sliding off of my legs every now and then.  Not my ideal Easter.  The Big C cooked a delicious ham with all the fixins- and I slept.  The kids had an egg hunt, and I slept through it.  A few of my grandkids got overly boisterous and got time out, I slept through it… lol.

I’m so tired of being sick and tired.  And yes, I know that expression is tired, but it’s so freakin true. I haven’t been around much because I’m afraid to just blog about negative stuff, or sound like I’m whining.  Each day I think about a post and I end up not doing it either because I am too sick, or too depressed.  I refuse to let that get the best of me!!  So every once in a while there will be a post with a lot of whining and bitching…no big deal, right?

Here I go…

Read More Read More

*2009 Advocacy and Kids’ Summit (and stipends to go!)*

*2009 Advocacy and Kids’ Summit (and stipends to go!)*

Did you know that over 46 million adults have arthritis and over 300,000 kids do as well? You have a chance to tell Congress that more needs to be done, at the 2009 Advocacy and Kids’ Summit!

At the Summit you will meet personally with your Members of Congress, or their staff, and will have the chance to tell your story.  How has it affected you?  Your family?  What is day to day life like for you?  Anything you would like to say about living with JRA, RA, osteoarthritis, or if you suffer from one of the more than hundred other forms of arthritis?  Now’s your chance!

Advocates will learn how to best communicate with their elected officials, attend a training workshop to improve their advocacy skills, meet with other advocates and network, and more.

Look forward to getting together with not just Members of Congress, (which is huge btw) but also people just like you and me; people who have arthritis and can relate to all of the trials and tribulations.  It’s not just a matter of pain, even chronic debilitating pain… but money issues, health insurance or lack thereof, medicines, stress on family life, marriage, etc.  We all need to know we are not alone, and boy, we sure aren’t with numbers like those above.

Register now for the 2009 Advocacy and Kids’ Summit, Capitol Hill, Washington D.C., March 2-4, 2009.  For more information please click this link here.

Here’s some good news- The Arthritis Foundation Public Policy and Advocacy Department is offering stipends to attend.  Stipends are limited to $1000 for an individual to $1200 for a family.  Application deadline is Monday January 12, 2009.

I’m going to list the congressional districts or states eligible for the stipends. If you are eligible and would like a copy of the application please contact the Public Policy and Advocacy Department at or 202-887-1700

Congressional Districts or States Eligible
1.    Richard Shelby, AL
2.    Lisa Murkowski, AK
3.    John B. Shadegg, AZ 3rd
4.    Mike Ross, AR 4th
5.    Nancy Pelosi, CA 8th
6.    Barbara Lee, CA 9th
7.    Anna Eshoo, CA 14th
8.    Michael Honda, CA 15th
9.    Lois Capps, CA 23rd
10.    Henry A. Waxman, CA 30th
11.    Hilda L. Solis, CA 32nd
12.    Lucille Roybal- Allard, CA 34th
13.    Diana DeGette, CO 1st
14.    Rosa L. DeLauro, CT 3rd
15.    C.W. Young, FL 10th
16.    Nathan Deal, GA 9th
17.    Daniel Inouye, HI
18.    Mike Simpson, ID 2nd
19.    Jesse L. Jackson, Jr., IL 2nd
20.    Jan Schakowski, IL 9th
21.    Steve Buyer, IN 4th
22.    Tom Harkin, IA
23.    Pat Roberts, KS
24.    Edward Markey, MA 7th
25.    Mike Rogers, MI 8th
26.    Betty McCollum, MN 4th
27.    Dennis R. Rehberg, MT
28.    Dina Titus, NV 3rd
29.    Judd Gregg NH
30.    Frank Pallone, NJ 6th
31.    Jeff Bingaman, NM
32.    Nita M. Lowey, NY 18th
33.    Sue Myrick, NC 9th
34.    Tim Ryan, OH 17th
35.    John Sullivan, OK 1st
36.    John Murtha, PA 12th
37.    Joseph R. Pitts, PA 16th
38.    Tim Murphy, PA 18th
39.    Patrick J. Kennedy, RI 1st
40.    Bart Gordon, TN 6th
41.    Marsha Blackburn, TN 7th
42.    Joe Barton, TX 6th
43.    Michael C. Burgess, TX 26th
44.    Gene Green, TX 29th
45.    Jim Matheson, UT 2nd
46.    Bernard Sanders, VT
47.    Jay Inslee, WA 1st

* * cross posted at, right here 🙂

I would do just about anything to be able to go to this summit.  Not only can we not afford it

, my health has been so bad these last 3 months, I wonder what the future holds for me.  I WANT to be well, I am doing my positive thinking, taking all of my meds, saying all of my prayers, and waiting.  Some days are good, but most are not and I’m really really trying to see the sunny side of life right now.  We have to pick up prescriptions tomorrow and they are going to set us back $1000.  Each month that’s what we pay for my meds.  If any of you go, please contact me when you get back and tell me all about it!!  I’m posting the video that the Arthritis Foundation has put out from last year’s summit.

Until next time

Good News from the Arthritis Foundation

Good News from the Arthritis Foundation

I just got this email from the Arthritis Foundation and instead of me trying to explain it ( I have no brain today)  I’m just copying and pasting the e-mail.  By the way, I’m advocate…   🙂

Arthritis Legislation Update
Dear Advocate,

As we near our nation’s birthday we wanted to share some preliminary good news regarding your advocacy efforts. Last week, the Senate Appropriations Committee recommended that the National Institutes of Health receive a 3.5% increase overall. Although the Arthritis Foundation and many other organizations were requesting a 6.5% increase for NIH, the 3.5% increase represents the first time in six years that funding for NIH research has kept pace with biomedical inflation. The National Institute of Arthritis and Musculoskeletal and Skin Diseases received a 2.9% increase with a recommendation for $523 million in Fiscal Year 2009. Due to Arthritis Foundation advocacy, the Committee specifically recommended the following in its approved bill:

“Arthritis – the Committee supports the establishment of a national data collection system to ensure that the safety and effectiveness of new arthritis treatment is understood and that they are applied in the most beneficial manner

, especially in the case of childhood arthritis. The Committee also notes the strong need for a national network of cooperating clinical centers dedicated to the care and study of children with arthritis.”

This Committee Report language was first shared with our advocates and Congress during the Advocacy Summit in Washington DC. This language is extremely important and indicates to NIAMS that Congress considers juvenile arthritis a priority and one that deserves more attention.

The Senate Appropriations Committee also recommended a 1.2% increase for the Centers for Disease Control and Prevention, raising their budget from $6.4 billion to $6.5 billion (a $76 million increase). Due to the advocacy efforts of the Arthritis Foundation, including the Chapters, our grassroots advocates and our Arthritis Ambassadors, the arthritis program at CDC received an increase of $500,000, which is nearly a 4% increase, for $13.5 million in Fiscal Year 2009. Once both the full House and Senate pass their committees’ versions, the differences between the two must be reconciled, passed again and then sent to the President for his signature. The appropriations process is far from over, and we will be reaching out to you in the coming months to continue your advocacy work to let Congress know more needs to be done for people with arthritis. Thanks to all of you for continued advocacy efforts to increase federal attention and resources for both adults and children at the NIH, CDC and in states throughout the nation.

Have a happy and safe July 4th!

A little girl of 4 suffers from JRA, her story

A little girl of 4 suffers from JRA, her story

Towards the end of this clip the newswoman gives the call letters to the station and you can go there to get this families blog address. It makes my heart break to know that children have to go through this too.

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