More Rheum Adventures on the Road
Happy Saturday, y’all!
Yesterday, I drove back from my mom’s ranch up on the Florida Panhandle. It was my first road trip since RA with me as the sole driver. My survival tools were cruise control, healthy snacks, music, and lots of rest stops. For the first half, we stopped for 10-15 minutes after every hour of driving. That really helped.
The second half was not as smooth. It was supposed to be a 7 hour trip, but severe weather and a few bad accidents turned it into 10.5 hours. Then we almost ran out of gas on the Turnpike, but a Road Ranger rescued us. Murphy was stalking us, but Roo and I are very patient so all is well.
My hands and elbows hurt, but I want to type for a couple minutes since there’s so much going on to share with you!
First, I hope you’re enjoying the genetics and RA series by Professor Bob West! We’ll have the 3rd installment on Monday. We are glad to have guest posts and have an opportunity for someone to share their expertise or viewpoint with us. Genetics will be an important part of understanding what RA is and how it works.
Rheumatoid Patient Foundation
We are making progress with the RPF website. Folks have been asking how to help, so here’s an opportunity. We want the images on the RPF site to show real people. If you have any picture (painting, graphic art, or photograph) that you’d like us to consider using, please email it to RPF (names will not be mentioned unless you request the image be titled).
Another way you can help right away is to fill out the first RPF survey. It’s anonymous and only takes about 10 minutes. If you’ve already done the survey, you could pass the link on to others.
T-shirt store coupon
This coupon came in the email while I was at my mom’s. It’s still good through Monday so if you’ve been thinking about getting some RA Warrior t-shirts or cups, this is a good time.
Coupon Code: FantasticNewColors
Discount: 30% off the base price subtotal, no minimums!
Disclaimer: Please enter coupon code FantasticNewColors before completing checkout. Discount is applied to the base price and does not include shipping, taxes, or additional charges. This offer may not be combined with other offers. Orders under this promotion may be delayed beyond normal estimates. Coupons valid from 7/20/2011 to 7/25/2011 11:59 pm Mountain Time.
Recommended reading
- Things are changing all around the world: Positive Signs for Rheum Patient Activism
- Do You Have Strange RA Symptoms? 177 Comments so far. Have you added yours?
- RA research helps Alzheimer’s? Hope for Alzheimer’s Disease from Rheumatoid Arthritis?
- Traveling with Chronic Illness/RA Part 2: 20 Helpful Tips
Hi,
I’m so glad you will be putting images of real people on your website. I was given my official diagnosis just over a month ago after 9 years of flares and remission. Yesterday, I was having a conversation with my 13 year old and I said something about hurting. She said (mostly jokingly), Yeah, yeah I’ve heard that before. I’m sure you all know how much that stung. So I asked if she believed that my RA hurt. She said, I guess, but you really don’t look sick.
I thought to myself later, people really need to see what others with RA look like – which is just like them. Sometimes I’m horribly swollen, which most people just think is weight gain, and sometimes I look perfectly fine, but I always hurt.
So, count me in! I’ll be sending you a pic.
Mary
I hear you Mary. Most of us look the same after RA diagnosis as before (just like cancer or ms patients do, by the way). But we have subtle changes that we identify with the pain, such as swelling or slow twisting of joints that just don’t look dramatic to others.
We could just buy images like most websites do, but we want it to be more real than that. Thanks.
Kelly you are always more than welcome to use my photo’s to promote RA in anyway you see fit. You know which ones I am talking about! So glad that you survived your long trip and on your own as driver!!
thanks Jam! Twas really harsh, but empowering too, right?
Hooray for you and your adventure! I found this site a few days ago and I almost cried…I was so happy to find a down to earth tell it like it REALLY is information site on what this disease does to us. I filled out the survery, and I am looking forward to the results and to what the Foundation will be doing.
I am extremely blessed in that it only took me a short time to get my diagnosis; I had symptoms for about 5 weeks, and was on meds in matter of another 3. I work for a former rheumatologist and I asked how many weeks I should let things go on before I saw a doc. I explained all my symptoms to him and he made a phone call to his former department that day. I literally cried while reading the onset stories of those here (I read them ALL), people having to wait months and years and having to fight and kick and scream to get their DX….
Anyway, I am so thankful to you Kelly for having this site!!! I will be coming here faithfully for sure.
It’s nice to meet you Theresa. What a great story about how the system worked for you. I hope your meds work as well!
Thank you Kelly. Although I was quick to get a diagnosis, that was almost 3 years ago, and we are still struggling to get the meds right. I realize that there will be good days and bad days, and I think I am finally at a point where I think I can say there are more goods than bads; that is after starting Humira about 3 months ago. I am keeping my fingers (gently) crossed that I’ve found relief for now.
Gentle hugs to all RAWs
Kelly,
So excited about the RPF. Your work here is what carried me through the first months of coping with my illness. I want you to know how much the RA community appreciates all that you do!
Glad to hear that your trip was a safe one. It’s amazing how something as uneventful as driving a car for that amount of time has now become this whole new level of exhaustion. I, too, am in the Panhandle (Ft. Walton Beach). Your mom must be so proud of you for all that you have accomplished with your outstanding efforts. Keep it up! All the best, Lynn
I just visited Ft Walton Beach since my brother’s there. Maybe we can connect sometime. I know a few others are near you, including one special friend with RA.