Opposing Spontaneity: My AS Story

I have a story to share today.  While I have loosely referenced it a few times in a few posts.  I have very pointedly not composed a blog entry and announcement…

The Diagnosis:

In August of 2011, after 9 years of doctors, physical therapy, pain killers and various other forms of therapy for my chronic back pain, I was finally diagnosed with something called Anyklosing Spondylitus (AS).  This is a genetic autoimmune condition that is related to rheumatoid arthritis and causes inflammation of the vertebrae and –in many cases–causes the spine to “fuse” in an immobile position.  As of now the only “fusing” that has actually occurred has been in my right hip/pelvis.  There is nothing I can do about the limited damage that has been done, but I am currently taking a medicine that should retard and maybe even stop the bone formation and fusing moving forward.

I did not share this in the beginning because I was afraid to go public.  I was afraid to appear weak.  I was embarrassed and I felt like when I shared my condition with others that–for some reason–this news embarrased them.

However, the more I learn about this disease, the more I understand the importance of sharing my story with others.  Perhaps there is another out there suffering.  Perhaps another has felt embarrassed or ashamed.  Perhaps there are others who can use my story to assist in diagnosis.  Perhaps there are others…

My AS Story:

My AS story is similar to many.  I have been experiencing sciatica and lower back and pelvis pain for 9+ years.  I’m young–35 years old–and I was 26 when I started experiencing it.  For years I visited a wide range of doctors and was mostly told to exercise and stretch.  On the occasions when the flare ups were debilitating, I was sent home from the ER with muscle relaxers and narcotics and advised to rest for the week.

Last spring I finally went to the doctor again because my neck and shoulders were so tight, to say that I had a “limited range of motion” would be generous description.  I moved like a robot!  I could not turn my neck and every time I moved (especially in bed) I could not stop myself from screaming in pain.  I was literally afraid to sneeze in public because, again, I was unable to suppress the ensuing screech or agonizing moan.  I swallowed ibuprofin in wee fistfuls on a daily basis for years and even that was not doing the trick.  Long story short–my doctors FINALLY started talking (I only had a Physical Therapist and Primary Care at the time)…and finally some more tests and x-rays were reviewed under the appropriate lens.

When I first wrote an email to my family about this condition, gmail auto correct tried to change the spelling of Ankylosing Spondylitus to : Opposing Spontaneity.

Not far off, right?  Gotta find the humor in this sometimes.

Treatment:

I was diagnosed in July of 2011 and I’ve been taking a medication called Humira since August.  For the first few months I felt, in some ways, liberated and validated.  I wasn’t crazy.  I wasn’t a big baby–I had REAL pain.  I have not taken a single Ibuprofen since I have been taking my injections.  I’m enjoying life to its fullest again and participating in activities that I have been unable to for a long time.  I’m not completely carefree–I’m still working on the range of motion in my neck and I do have some damage/fusion to my pelvis and hip.  But comparing my current state to the condition I was in at this time last year–well, I feel like I have super hero strength.

However, Humira is also my kryptonite.  This drug works by blocking a protein found in the body that causes inflammation… in turn, it also lowers the ability of my immune system to fight infections.  As I’m learning my limits and my vulnerabilities this year, I have opted to miss family gatherings and even a few milestone events to avoid the risk of getting sick or an infection.

And so it is that Humira both is both imposing and opposing my spontaneity.

Seeking Ways to Kick AS!

I’ve been reading a fair amount about the short and long-term affects of TNF Blockers. I have also been reading anything I can get my hands on about AS and its cousins–and all other autoimmune diseases for that matter.  At this point I’m ready to meet others with AS and learn their stories–and hopefully be inspired by others who are finding ways to not just manage the disease–but are in control of it.

I will continue to seek support groups.

To Others With AS:

I’m curious to know what treatments others are going through–be they medical or holistic.  I’m seriously considering a major change in my diet and I’d love to know if others have tried this and if it helps.  I want to know if there are others who use/have used TNF blockers considered a vacation from the drug — or find out if the drug has lost its potency over time–or if anyone has experienced any side effects.

Do we know of anyone who has gone into remission (gasp!)?!  Or on the negative side–anyone who has developed other autoimmune diseases?

I’m also interested to learn what sorts of physical activities others with AS still participate in.  I’m especially curious about yoga recommendations–any tips on a yoga instructor who has experience with our limitations (I had to go to a walk-in clinic after the last time I went to Yoga –a year and a half ago.  I can’t trust myself to know when not to do certain poses.  I want someone who will say, “Mary Ann–you can’t do this” and then recommend an alternate pose or tell me to rest for a minute).   I was an avid cyclist (I participated in 5 century rides in the last 10 years).  I’ve hung my long-distance riding helmet up and am looking for other personal and physical challenges to keep me active.  My physical therapist just gave me permission to train for a sprint triathlon–and now that I can finally look over my shoulder, I in an intermediate swimming class to work on my freestyle stroke.

Thank you for letting me share this story with you today.  If you have questions about any of this, feel free contact me or comment on this blog.  You can also find out more from these websites:

http://www.spondylitis.org/
(website hosted by the Spondylitus Association of America with all the information about the disease, research, medicines, and advocacy)

http://www.kickas.org
(website that is a member-driven support group — less professional medical opinions and more of a forum for those affected by AS to share experiences and advice)

http://www.spondyville.com/
(an inspirational website that includes a collection of witty stories and amusing anecdotes–because laughing is healing!  The web host also hosts a weekly live chats on Saturday at Spondy Cafe.)

http://artappleaday.com/wordpress

(Images in this blog entry brought to you by: The Art Apple A Day Project started on October 1, 2010 as a way to help bring awareness to a disease called Ankylosing Spondylitis.This is an archived website to showcase the 365 posts and apples. It is a place created using art, pop culture, and stories of living with chronic illness in a positive and unique way.)

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About themacdoodle

Communications Manager, Creative Strategist, Community Builder, & Possibility Agent
This entry was posted in The Path of Enlightenment and tagged , , , , , , , , . Bookmark the permalink.

5 Responses to Opposing Spontaneity: My AS Story

  1. Peter says:

    My wife’s brother has been diagnosed with AS so I have been researching and learning more about it. My wife has ulcerative colitis too and remicade, which is in the TNF blocker family, can be prescribed for both diseases. Good luck and glad you have found some relief with medications and sharing.

    • themacdoodle says:

      Thank you for your kind words, Peter. Good luck to your wife. My grandmother has Crohn’s and my brother has Psoriatic Arthritis (he’s taking Enbrel–another TNF blocker). I’m actually studying the diet recommended for those with Colitis as it appears that it is a good diet that has been shown to reduce inflammation. Good luck to your wife–and she’s lucky to have your support. I am so incredibly grateful for my wife and family who have all been so supportive from finding relevant material to read to pushing me outside and encouraging me to be active! It makes a HUGE difference and your wife is lucky!

  2. Clarisse says:

    This is a courageous post, and I am sorry to hear that you suffer so! I have pretty bad UC (as you probably know from my regular over-shares on FB), and the very bad joint issues that go with that—–so to respond to your previous comment – I heartily recommend the Specific Carbohydrate Diet (if that’s the one you mean). It has given me my life back and kept me off immune modulators. Exercise remains a tremendous challenge — even long walks make me pay — so I will be interested to hear what you come up with that works for you. Wishing you health and happiness.

  3. wuggsdorcala says:

    mybe time to check out the book on the special AS diet 🙂

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