Wednesday, May 19, 2010

So I've been really bad and not posted in a while! It has literally been crazy for me!!! Doctors visits and re-doing blood-work every couple of days because THEY did something wrong...to still not having the answers to the tests..is my liver function normal???



My last visit to the Dr not good at all so the spine is doing what any AS patient knows it will do. I've got discs that are getting worse..blah, blah, blah. Great news I may be upping the methotrexate. Yes, that was sarcasm. I've heard of some having a bit of hair loss...I've got so much hair that a little loss is needed! BUT...it's the dang curl right now. So, I DO have natural curly hair, but this is ridiculous!!!!! The doctor also suggested a bit of bed rest for me to ease the pain---I mean really did you just say I needed bed-rest? Do you realize that I do NOT have time for that right now.



I do have fantastic news though--my youngest was complaining of lower back pain and we had her tested yep-HLA-B27 positive-that's not the fantastic news--she's showing no signs of AS!!!! Thank you Jesus!!! Prayers are answered!!! Ped Rhuemy saw her and she's doing great!!!! YEA!



Right now, I'm in the worst pain I've been in. One reason I'm sure is because I'm so busy with a daughter who is graduating this year! Huge grad party this weekend, graduation and family party the following weekend. And my youngest just had a huge 15 year old party herself. It's a 3 letter word---MOM! I love being a mom and AS will NOT stop me from being the best mom I can be!!!



While I was at the hospital getting copies of my youngest x-rays I saw a family friend who is also our ortho doc! He was asking what I was doing....and we chatted a bit. His gets AS...he says do what you can. Keep moving. For those that want to say exercise, you really have NO IDEA! I want to scream!!! He adds, folks don't understand. They see that you look fine. Yes, folks-I look fine! but, you really have no idea!



Keep learning about AS! Spread the word--knowledge is key!

http://www.spondylitis.org/



I have AS but I will NOT LET IT GET ME!

2 comments:

  1. Hi Meloni,

    I just started reading your blog and it's really interesting for me, as a 24 year-old woman looking forward to my future. It's inspiring to see what you're capable of with AS. I was diagnosed at 16 and have made it to graduate school, but lately it's been really bad. Naturally I wonder what turn the disease will take and how I might have o change my plans. Of course I have doubts that I'll be able to have children and be a successful mom. Were you diagnosed before you had your girls (they're beautiful by the way). If so, did you consider not having kids so you wouldn't pass it on? Was pregnancy very painful for you? These are the kinds of thoughts that run through my mind lately.

    By the way, that's wonderful news that your daughter doesn't have AS, though. Congratulations!

    Please visit my blog sometime soon: www.lovingwithchronicillness.blogspot.com

    All my best,
    Maya

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  2. Maya,
    I've been reading and following your blog as well and love reading! As for me, I have had numerous problems along the way--my pregnancies-- I was bed-ridden with both! don't know if it had anything to do with AS because I was only diagnosed last year. I was misdiagnosed about 3 years ago and now have the correct diagnoses. So my pregnancies were the worst!!! Both girls were a month early, but thankfully born healthy! As for my youngest, she does have the gene HLA B27..we know that. She also has an autoimmune problem...as for now, the AS has not "triggered". We are very thankful for this. I've not had my oldest tested.

    If we lived our life wondering IF...what if this or what if that...it wouldn't even be a life worth living! My cousin just died at 45 with t-cell lymphoma..she left behind 4 children..none of us know what our future holds. We only know who holds it. I just pray that my girls don't get this terrible disease! We really don't know what "things" we might pass along, but the one thing we can pass along is how to live a good life. One that you can be proud of. One that you can be thankful for--even with AS!

    Hope that helps and I'm always glad to share!
    meloni

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