Hurting But Hopeful

We all hurt in some form or fashion, but without hope the pain wins….I am hurting, but I am also hopeful!

I am a mother and wife first, and a patient with Ankylosing Spondylitis second. Even though I have AS it doesn’t have me and I am very blessed. The Lord has given me so many wonderful things in my life, so the positive definitely outweighs the negative! I have a wonderful husband, who is also my soul-mate and best friend of 13 years (we got married at 19!), and two gorgeous kids. I lost my mother to breast cancer in 2000, when she was 45. I miss her so much, and to add to the loss, both my husbands parents passed away recently as well. It is hard raising two kids, while having a disability, and while not having a large family for support. I am blessed to have my father here with us, and he is a wonderful grandfather to my babies. After I was diagnosed with Ankylosing Spondylitis I felt like I had finally found my purpose on Earth…I was meant to be an AS advocate, and I take that very seriously. I hope I can not only teach the world what living with AS is about, but I hope I can help others like me deal with the toll it takes on not only our bodies, but our souls. So with this blog, I hope you can get to know me, my goals, and more about AS. Thanks for reading, and please feel free to leave feedback, good or bad!

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ASAP: Ankylosing Spondylitis Awareness Project

ASAP LogoThe Problem: Most people have never heard of ankylosing spondylitis. Unfortunately, medical professionals and researchers are no exception. This is surprising because a relatively large number of people, estimated to be between 1 to 2% of the general population, are afflicted with this disease. That means that for every 100 Facebook friends you have, odds are that one or two is a spondylitis patient. It is NOT a rare disease. Its prevalence is similar to that of rheumatoid arthritis. As of December 2009 only 23 active grants funded by the National Institutes of Health (NIH) are related to ankylosing spondylitis. This is 10 to 40 TIMES less than diseases with similar prevalence. For example, there are currently 774 grants that fund research into rheumatoid arthritis. To make matters worse, the NIH has released only one request for applications to promote research into the pathogenesis of ankylosing spondylitis since 1992.

So why is there so little interest and support for ankylosing spondylitis in the research community? We believe it is a problem of awareness. Ankylosing spondylitis is a chronic degenerative illness that deserves the attention of the research community and funding agencies. More researchers need to be recruited to the cause. Medical doctors need to be educated in the latest research findings in order to make more informed treatment decisions and more accurate diagnoses. Patients and families need to learn to cope with the lifelong impacts of this disease. We are hurting, we need to hold on to the hope that a cure may yet be found in our lifetime.

Our Strategy: We are an online community of AS patients, family members, and friends. We propose to carry out a variety of group awareness projects to help raise the level of visibility and awareness of AS in both the general public and the medical community.

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SAAThe Spondylitis Association of America was founded in 1983 by people affected by ankylosing spondylitis, a crippling form of spinal arthritis that strikes young people. Prior to that time, there was no support network, no resource for educational materials, not even a single pamphlet for people diagnosed with the disease. SAA was the first and remains the largest resource in the United States for people seeking information on AS and related diseases. Our mission is to be a leader in the quest to cure AS and related diseases, and to empower those affected to live life to the fullest.

There are more than 100 types of arthritis. For over 25 years, SAA has focused on just one – yours. So that no one has to face spondylitis alone.

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From The Archives

A little under two years ago, I was in an extended flare that lasted months. During this difficult time, my mother traveled from Texas to South America in order to visit me and spend some time here at my house. My blog was just a few months old at that time, and I asked her to write a post.

Voices OF RA: The Mom
RA Guy on September 1st, 2009

RA Guy mom shirtI am at the half-way point of my month-long visit with my son, RA Guy.

My husband and I live in a different continent than our son so the only methods of keeping in touch with him are through phone calls and/or emails.  Although, I must say that since he moved here about 7 years ago we’ve been fortunate in that we’ve managed to see one another on numerous occasions during each passing year – he’s either visited us at our home in Texas or we’ve met in the San Francisco area, we were together at our daughter’s wedding in Missouri, we visited him here a few years ago, and once we even met up in Paris, France for a vacation.  I was so glad when he started his blog because it offered me a way of daily keeping informed of his rheumatoid arthritis.

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More Rheumatoid Arthritis Blogs

I am a young women who has had the pleasure of living Rheumatoid Arthritis for the past 10 years. Before the onset of my illness, I was living a fabulous life, working a fast pace job with huge advancement opportunities, married, dressing in sassy outfits, sexy shoes and doing whatever I wanted, when I wanted. My favorite pass time was shopping, hanging out with the girls and getting out enjoying life. Then it hit me, and over the years it hit harder and harder. Eventually, I was no longer on my own time, I was on my body’s time. The outfits became less sassy and the shoes were nowhere near I had to stop working, more and more of my income had to go to medication/treatments, and the bed became a big part of my life.
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Fighting the Invisible
This is my story about fighting an invisible illness. I was diagnosed with Rheumatoid Arthritis in March 2011, so this is a whole new scary experience for me. One that I’m going to share with the world…
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My name is Shannan. I am 26 yrs old. I currently live in NYC and am entering my last year of graduate school for my masters in social work. I work full-time at an agency providing services for babies with developmental delays. I am also planning a wedding to take place in the Summer of 2012. My fiance is amazing and although he doesn’t always know how to “help” me with my many pains, RA symptoms, fatigue moments and general moodiness, he tries his best and really that is all I can ask. I am at a point in my life where I can go many different directions, but  rheumatoid arthritis, fibromyalgia, chronic pain & fatigue are always having to be considered. This blog will document my struggles and successes (hopefully more of the latter) as I navigate my later 20′s as a student, employee, friend, daughter, animal mommy and future newlywed…and all the “fun” that comes along with that.
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Bilateral Hip Replacement
I am 33 years old and received bilateral hip replacement surgery on 8th April 2011. Technically it’s really a Birmingham Mid Head Resection. (The McMinn Centre has some awesome info about the procedure) The decision to do this now rather than in a few years time took some time, consideration and a lot of research. There aren’t too many personal stories out there and there are a lot of people like me – so I have decided to share the journey in the hope that it’s useful to someone else.
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Luke’s JIA Journey
It’s hard to believe that it has been almost a year since this disease entered our lives. I started keeping a journal because I wanted to be able to look back and see all that Luke has been through. It has also helped me to keep track of the information that the doctors have given us, medications and tests. So here is our journey thus far.
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ABC’s Of RA: RA Junk Art

Junk ArtThis got me thinking (you have now entered a field of land mines). Why don’t we have more creative ra wear.

I am not talking clothing but rather things I have been forced to use in my ra world on a daily basis that to put it bluntly look dreadful! No wonder we get discouraged living with RA. I mean, look at this thing! Dreadful…just dreadful! And here is my hate list: hand splints, elbow wraps and knee wraps (canes do have a lovely, wide variety to choose from). I would love to see some creative type out there invent a hand splint that I can “art” up if I desire. Heck I would be happy to be able to pick a color besides black or maybe white (I think one manufacturer makes it in white). What about blue, pink, purple, polka dots, stripes or anything I fancy.

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I recently came across LemonAid Crutches, which seems to be doing something similar to that which you write about — they work just with crutches, though. Yes, canes we do have…and I’ve recently made it no secret that I want a Dr. House cane!

Rheumatoid Arthritis Bungee Jumping

RA Guy Bungee JumpJust as quickly as I bungee jumped into my latest flare yesterday, the invisible elastic cord snapped and pulled me right back out. Today, I am happy to share that I am back to my usual normal. No, that doesn’t mean that I am pain-free, or that the inflammation has gone away completely. It just means that I’m back to the level of disease activity that has become a part of my daily life.

Like I said a few weeks ago, after I go over a horrible stomach bug, it feels like a blessing just to get back to the pain and disability that I have grown used to.

And the more I think about it, being in a flare is actually very similar to bungee jumping. I jumped once myself, many years ago when I was still in grad school. It wasn’t the typical straight off a bridge jump, but was more of the Las Vegas style huge arch type of jump…still, it was scary (and exhilarating) as heck!

Let me start, though, with the differences. With a real bungee jump, you have time to prepare yourself…mentally and physically. You start telling yourself that yes, you can do this. (Of course, the second you jump, those thoughts turn to what the heck was I thinking?) You strap yourself in, over and over again, and all of the buckles and belts and so on are checked, and double checked, and triple checked. Then, finally, you step out on the edge (or in my case, are raised to the top), and then one…two…three, the jump begins!

With yesterday’s flare, there was absolutely none of this preparation and forethought. The most simple explanation would be that it felt like while you were sleeping, someone put on the body harnesses, snapped all of the buckles, hoisted you up, and then pushed you over the edge into your freefall. Only when you are in that seemingly endless descent do you actually wake up, open your eyes, and realized what’s going on. This is what it feels like to wake up with a major flare.

And when one is actually bungee jumping, those first few seconds of fear immediately turn into one of the biggest rushes ever. It feels so good to just fall free, while the air is brushing against your body. Of course, in a real free fall one knows more or less where the end is going to come (hopefully, before one reaches the ground..haha!), so one can actually sit back (figuratively speaking, of course) and enjoy the experience. Now let’s get back to a flare. While in a flare, there is this same sensation of extremely rapid downward descent. There is, however, absolutely no indication of when the end will be reached, when things will stop getting worse and once again return to normal. There is no moment, not even one second, to stop and take a break. Sometimes it feels like there is even no time to think, and nothing to grab on to.

Yesterday, I was able to pass though my flare with much less anxiety than I previously used to experience. (And no, I am not going to say that I actually enjoyed it–like an actual bungee jump.) Looking back, I realize that I have much more confidence in my ability to get through this flare. As long as I know, during every moment, that I am doing what I need to in order to take care of myself, I feel just a little better. Quite often what I need to do in five minutes is going to differ from what I need to do now, but I’m going to concentrate on the now. I’ll concentrate on what I need to do in five minutes when that moment arrives.

I’m also starting to figure out that trying to figure out when the flare is going to end actually makes the flare seem even worse. If I tell myself things are going to get better in a couple of hours, and two hours later I’m feeling worse, well then the original challenge that I am dealing just increased in terms of complexity. So, for the first time ever in a flare as severe as yesterday’s, I honestly did not once wonder when it would end. I just knew that eventually, I had no idea when, I would reach the bottom and then start to bounce back up. In the meantime, (back to my previous point) I was going to continue to focus on what I needed to do at the moment. Every hour, every minute, every second.

If I want my flares to immediately go away, and they don’t, I’m always going to refer to them as lasting much longer than they were supposed to. If I just keep my mind open, and bunker down and continually take care of myself (and reach out!) during a flare, then once it’s over I can actually say that it ended more quickly than I expected.

Once again, I can say that I survived my most recent flare.

For the first time ever, however, I can also add that it finished much sooner than I could have ever expected. (The secret, of course, being that I had no expectations about when it was supposed to end.)

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!