I haven't exactly been doing to good with this ankylosing spondylitis (AS)! I've been cutting back in all areas of "life" trying to get this disease under control. Even my Rheumy says, "usually my patients get better, not worse". WHAT?! UGH! oh, and that's not the 2 words you don't want your doctor to say because if it were my count wouldn't be correct!
So...the 2 words are---aggressive form
Rheumy tells me last week that I have an aggressive form of AS. Not really want I wanted to hear. I've been on humira and enbrel which I'm not responding too. So, we're going to remicade IV. That's not a roman numeral! I will take an I.V form of medication now. I am still on methotrexate and will continue it. The pain has been out the "waazoo" lately and I'm praying that this change will be just "what the doctor ordered"?! I'm also praying that insurance will be cooperative and that my cost will not be high--all very scary when you think about it!!
I'm very proud of both my girls! ALWAYS! Laney will be Pepper in "Annie" with the Lyric Theatre this summer and rehearsals are underway! Aria is in the works of starting a new organization at college it will be called "Spond-ah, What?" Education about Ankylosing Spondylitis. WOW! What a great thing she's doing! She's incorporating other forms of arthritis as well.
The other newest "thing" started that I'll be involved with is Esther's Closet. Our pastor has really challenged us to be and think radical! Actually the idea was really my husbands...the organization will "check out" semi and formal dresses to those who are in need. So, while your doing spring cleaning, donate all those dresses you'll never use again to Esther's Closet, we'd love to have them and put them to good use! We'll let girls/women come for bridal gowns, proms, dances whatever special occasion they have! This is going to be such a great ministry to be involved in. There are so many people who have lost jobs, lost their homes, single moms, etc who can be helped! If you read the story of Esther--WOW--from an orphan to a queen! All women LOVE to get "dressed up". So, why not help those with a dress?! I've got folks from all over who are loving the idea of shipping dresses they have no use for that can actually be put to "good use"! Do you have any?????
So for now, I'm focusing on the "positive" there are so many positives that we don't even "see" in our lives. Sometimes when your body is hurting and the pain is just unbearable you forget that there are positives. We aren't diagnosed with a "life-threatening" disease, but it is "life-changing". Thing is we can't let it take over and be in control or that's where it gets your mind and spirit. I'm praying for direction and seeking God's help and wisdom on this AS! I would like for folks to understand and learn about this disease! How can we make it known? How do we get the word out? I'm not exactly sure of all of that. But, talking about it is a start. Forming organizations in college is a start. Raising funds for research is a start. For my spondy sufferers, don't let AS have you! Stay in charge! Now, we will all go through "down" times, that's life! Even healthy folks have this. I challenge you to think of positives daily!
I would ask that as folks listen to us as we tell you, as we explain, don't ask us have we gotten a second opinion or if we'd like the name of your chiropractor (now, the thought of that makes me hurt) or if we'd like to try vitamins or homeopathic whatever... we have a disease. It's called ANKYLOSING SPONDYLITIS google it! read about it! YOU do the research before you give us your "healthy living advice".
Spond-ah What? Just love that name for Aria's new organization/club. And to think that she's planning on going to law school and what she'll do to help all us spondies!!!
I can do all things through Christ who gives me strength! I may have AS, but it doesn't have ME!