Tuesday, September 28, 2010

AS-my story


I've been asked to share/tell my story so I thought I'd just share again on my blog as well for those of you who've just started reading.


I'm a mother of 2 beautiful daughters


And I have a WONDERFUL husband and BF of 20+ years.

Ankylosing spondylitis (AS) was not what I wanted to join my family. About 3/4 years ago I started having terrible pain in my lower back and my hands and feet were so swollen and hurt so much. I went to my PCP and she did TONS of blood work trying to find out the cause of all the swelling and pain. I was checked for everything from lupus to rocky mountain spotted fever! I was referred to a rheumatologist (rheumy) who did an exam, looked over my PCP's records/tests/x-rays and he came to the conclusion that I had fibromyalgia. He started me on "drugs" and I had very negative reactions to every drug he would try and the pain and swelling was only getting worse. All the while my husband is saying you don't have fibro. You need to find another doctor. A scheduled return to my PCP and she asks how I'm doing-etc and I tell her that rheumy's diagnoses was fibro, meds aren't working....all the while she's looking over all HER tests again and says.."YOU HAVE ANKYLOSING SPONDYLITIS"...you are HLA-B27 positive...I have ankle what??? He missed it! Why didn't my rheumy see this???

I'm referred to a new rheumy. She immediately diagnoses my AS and starts treatment--more tests, more x-rays, bone scan. Can I say my first visit to her I broke down in tears---finally I know why I feel this way, and then the tears of WHAT?....what happens??? Me? NO! I don't want to have this. She had printed only about 20 pages of information for me and it included a picture...a picture of a man and his AS progression-the curved bamboo spine. I cried all the way home and talked with Lang. Showed him the picture--"I don't want to look like that"...he says, "well don't wear those shorts". Can I just say how much I LOVE this man of mine!

If you're still reading--God bless ya! I know it's long, but it is my story and it is AS. I think at this time you may be wondering but what is it, so watch this short video (I'm a visual person)







I do worry about what my future holds, but good thing is that I know who holds it! With my husband and God I can get through this terrible disease.

So for now.....I give myself a shot in the stomach of methotrexate every Wednesday evening-this is a chemo drug and yes, I do have side-effects (nausea and hair thinning). On Thursday I give myself a shot in the leg of Enbrel. On Fridays or Sundays (depending) I give myself a shot of B12 (or I get someone to help with this one). I take folic acid everyday because I'm taking methotrexate. I also take pain meds when needed. On Friday I take a very HIGH dose of vitamin D (found that autoimmune patients are usually low-I was VERY low). I also take one other drug (for inflammation) that some are saying I'm not supposed to take with the methotrexate because it does increase the risks of liver and kidney failure (now there's something you want to hear), but my doctor says that's not true.

I live with AS and most folks don't realize that I have this terrible disease. Or if they do, they don't know what it is and they certainly don't know that just getting out of bed is a "job" in itself. I do "things" that I know I shouldn't because I know the next day is going to be very painful. So why do these "things" you ask...because for the most part, it's just "life". It's living! I refuse to stop "living".

I ask you to learn about AS. To realize that yes, I do have a handicap permit and I do look fine, but there are some days that the walk is too far so don't stare and think shame on me for using it. I ask that when you look at someone who looks "normal" to understand that maybe they aren't. I ask that when you hug me, hug me gently--and NEVER pat my back. If I don't shake your hand, it's not an unfriendly gesture, it's just usually they are hurting and you will squeeze too tight, or another reason, I'm taking Enbrel which compromises my immune system and I really don't need your germs.

I ask you learn about AS-help me by learning what it is.....

http://www.spondylitis.org/main.aspx

My saddest day--learning my youngest is a carrier. My prayer is that her AS never "turns on". That it NEVER invades her body. I pray that God will protect her and guard her against this evil disease. At that moment you feel as if you've failed as a parent--how could I give such a terrible thing to my child, then I realize that she's not mine but God's and I hand her to Him for protection.

What does my future hold...I don't know, but I do know who holds it! I can do all things through Christ who gives me strength.

4 comments:

  1. This is an amazing post! I almost was in tears because I can relate so much to your AS story. After years of being passed from doctor to doctor to try & figure out my undiagnosed pain I made it to a Rheumy who diagnosed me w/in 5 minutes of our 1st visit. I broke down. I was scared, relieved & angry all in 1 emotion. I too am worried that one of my children will be a carrier & just pray that they will never have to experience the pain we as AS patients go through. I fear for my daughter because she was just diagnosed w/epilepsy, which I unfortunately passed on to her. I completely agree that we hold our future & it is our job to take charge as best we can! Keep spreading awareness of AS, you are doing an amazing job! Wishing you all the best Meloni!

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  2. What an amazing journey! God bless you and your family. Your story is a testimony that should be shared with as many people as possible! I applaud the support that your family has given you and continues to give you - it is the strength of the family and friends that truly supports AS sufferers from day to day. My name is Sonya and my sister Angie has AS. Her AS is advanced to the point of some fusion in the neck, spine and extreme pain in the hip/leg area. Her horizontal gaze is limited and though she continues to drive -(that is a scary thing)she has become more homebound. I love her dearly and wish there was a magic wand that I could wave to zap this miserable/painful disease from existence. Angie has been through a long list of meds and unfortunately a few docs that didn't care enough to see beyond the limits of Medicaid. Her inner strength is amazing and from your story I see the same determination. Long story short - is that we have a fight on our hands against AS and we are in it to win it. Sleepless nights, painful days, stares from strangers and fear of the unknown might be a daily part of this but for every negative aspect of AS there is someone like you and my sister - fighting the good fight of faith. Keep blogging - no matter how long it takes - your story is making a difference. Let's keep each other in prayer! Sonya Barlow - on behalf of my sis - Angela Jackson

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  3. That you both for the kind words! I do pray that a cure will be found! And our children never have to suffer this terrible disease.

    Sonya, my brother has AS as well and he's totally disabled---but there are no rheumy's that will accept medicare (or whatever it is he has). So treatment for AS is not happening for him. It's very sad! I know exactly how you feel! And I'm sorry! The only way to get help for all of us with these disease is for folks to actually learn about it....so blog I'll do!!!!

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  4. Hi I have just read your story - I also have AS, I took 8 years to be dx and almost being accused of making it up when diagnosed, by then so much fusion had taken place. Now nearly 40 years later, 3 broken backs, spine surgery, I am that woman who is bent over double. I had to give up work over 2 years ago as I couldn't go on any longer. I had been taking enbrel which made a huge difference to my quality of life - but another health issue resulted in major surgery this summer so embrel was stopped a year ago, hope to get back to it again soon. Take care, be strong, keep mobile, exercise when you can, and when you can't be kind to yourself xx

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