United Voices for Ankylosing Spondylitis was created for us to all share our stories and we are honored to have Meloni be our first “Guest blogger” and share her experience with AS. Thank you so much Meloni for your courage to help spread awareness through your story.
Ankylosing Spondylitis Mom
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!
I do worry about what my future holds, but a 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.
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.
Check out more of Meloni’s blogs
Meloni’s posts hit home for me. So many of her posts seem to be a page out of my own experiences. It is always comforting to know we are never alone in our fight to live with AS.