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+--- Thread: Ankylosing spondylitis (/showthread.php?tid=44290)
Ankylosing spondylitis - Katie - 2011-07-12
Long post and I'm sorry!!
Ankylosing Spondylitis is what it's called and I was just diagnosed with it this spring.
It's a lot for me to accept considering I use to be such an active person. I had overcome so many obstacles in my life in the past few years. An abusive relationship (well 2 if you count the past 12 years), graduating college TWICE, 2 babies, 2 c-sections, surgery to remove my appendix, gallbladder and parts of my intestines, my first house with my fiance, A FIANCE!
I woke up one morning unable to move my fingers and toes. My body ached and my joints were swollen all over the place. I didn't think anything of it since arthritis runs in my family and I just thought that's what it was. I popped some motrin, after not being able to move out of my bed for 2 hours, and went on with my day. The pain and inflammation got worse as the days went on. I was bed ridden for almost 2 1/2 months, unable to even get out for dinner with my family. I was seen by my regular physician during this time, put on every steroid and anti-inflammatory you can think of. Nothing helped. I was put on Vicodin, Tramadol, and other pain medications. Nothing helped. I was still in massive amounts of pain.
I was unable to go outside with my kids and fiance. Unable to play in the snow with them, unless it was on my BODIES terms. After 2 months, my physician sent me to a Rheumatologist thinking I just had severe arthritis or Lupus or even Rheumatoid Arthritis. I got an appointment with one close by at a great hospital and a top Rheumatologist. He didn't take my Insurance, but my friend I went to school with was doing her externship there and spoke to him. He said he would see me as a professional courtesy (see me for free with no charges for anything including all testing). I saw him and he sent me down to the lab for blood work and some x-rays.
I went back a week later for the results and was shocked to hear them... Ankylosing Spondylitis. I cried and cried and didn't know what to think. I read up on it when I got home. It said most people need hip replacements by the time they're 50. I'm 30. I'm getting married in less than 11 months. We're planning a baby in the next few years. Could I do any of this without pain? Without worrying that a flair up would ruin any of our plans for the future? I wasn't sure, but one thing I was sure of was that my fiance was by my side through all of it. Through all the pain, the anger, the depression, the sadness, the hate, the everything. I also learned that I would no longer be able to work as a Nurse. I was heartbroken. Unless things change with my health, this will no longer be a career I love to do.
Here I am, 6 months later since the pain first started. I'm still in tons of pain in my joints, but I've been put on Sulfasalazine which is a powerful medication that will help with the inflammation. I'm still on the motrin and vicodin and soon I'll be starting Physical Therapy.
Just when you think something won't happen to you, ANYTHING can happen to you in an instant. Everything can be taken away from you. So, just live your life. Love it. Love the people around you. Treat people the way you want to be treated.
I'm still depressed because I can't do much still... but my dream is to walk down the aisle to my fiance, holding my dads hand, saying our vows to each other, having the baby we want and going on our cruise for our honeymoon in 2013.
Ankylosing spondylitis - Loose - 2011-07-12
Take care and stay strong. You're an awesome person, I wish you luck on anything and everything you do.
By the way, congrats on the marriage thing and have fun with it! : D
Ankylosing spondylitis - Salguod - 2011-07-13
I was diagnosed with ankylosing spondylitis earlier this year, too. Your case seems much more serious than mine though.
Have you tried Enbrel? If you haven't, you might want to look into it. My rheumatologist said it was very effective at treating the symptoms (not the disease itself, unfortunately). I can't tell you my personal experience with it because I opted not to take it since I didn't feel my symptoms were that intrusive yet.
Anyway, I wish you the best. You seem to have a very supporting family so I'm sure you'll get through this.
Ankylosing spondylitis - Kalovale - 2011-07-14
Jesus Christ, the world is so full of pomegranate. ;_;
Ankylosing spondylitis - ShinkuDragon - 2011-07-14
Kalovale Wrote:Jesus Christ, the world is so full of pomegranate. ;_;
i can't say much more than this unfortunately, hope you get better, and luck on that dream
Ankylosing spondylitis - Turtally - 2011-07-14
Sorry to hear about your troubles. I wish you the best, and I hope your dreams become your reality, because you really deserve that.
Ankylosing spondylitis - Katie - 2011-07-14
Salguod Wrote:I was diagnosed with ankylosing spondylitis earlier this year, too. Your case seems much more serious than mine though.
Have you tried Enbrel? If you haven't, you might want to look into it. My rheumatologist said it was very effective at treating the symptoms (not the disease itself, unfortunately). I can't tell you my personal experience with it because I opted not to take it since I didn't feel my symptoms were that intrusive yet.
Anyway, I wish you the best. You seem to have a very supporting family so I'm sure you'll get through this.
I have not tried that. What kind of medication is it? So far we're just doing the treatment of Sulfa and seeing where that takes me.
Thank you everyone for the support. Maybe, somehow, this is just a bump in my road of better things to come.
Ankylosing spondylitis - Rob - 2011-07-14
You'll be fine honey! I'm so sorry to hear about this, it makes me feel so sad. Be strong, be happy and best of luck with your man and your kids, since I know they are super awesome. You're a sweet mature woman by now, and it's time to step up and make the best of your life no matter what tries to hold you back.
Be amazing as you always are,
Love,
Rob.
Ankylosing spondylitis - aslemn - 2011-07-14
It's terrible to hear such thing :C
I know it's also terrible to be diagnosed with it with all this happiness coming in the future, a marriage, a house, a kid. And that's what you should look forward to. Doesn't matter about how many misadventures you find, how strong the pains can get or how sad you feel about not feeling like you did in the past. You're an awesome person, and have an uncountable amount of people caring for you, and hoping for you to stay strong.
That's what i have to tell you, stay calm, strong, because even if you can't make it disappear, you can still win agains't it. Diseases are never expected, but are always there, the same goes about pain, and even though they don't seem to disappear, although they get into a degree that you can do nothing about it, that even medicines seem to take no effect.
You should stay always calm, because one time, the pain will go away, and soon, your body will learn how to take the pain, and stay strong even when it seems impossible.
You have some amazing moments to live by now, and many more happiness to live into, that's the only thing that matters. Looking forward for some celebration pics soon! :>
Hope i could express it as well as i thought i could. Stay strong, Katie! We're hoping for you to stay fine :>
Ankylosing spondylitis - Salguod - 2011-07-14
Here's a nice overview. You can also google for the official site and other sites. I don't know how it compares to your current treatment, but your rheumatologist probably does.
Ankylosing spondylitis - Katie - 2011-07-16
Rob Wrote:You'll be fine honey! I'm so sorry to hear about this, it makes me feel so sad. Be strong, be happy and best of luck with your man and your kids, since I know they are super awesome. You're a sweet mature woman by now, and it's time to step up and make the best of your life no matter what tries to hold you back.
Be amazing as you always are,
Love,
Rob.
Thank you hun <3 Means alot to me! I'm trying to just live my life with no worries and be fear less... sometimes I just over push myself and end up paying for it in the end.
aslemn Wrote:It's terrible to hear such thing :C
I know it's also terrible to be diagnosed with it with all this happiness coming in the future, a marriage, a house, a kid. And that's what you should look forward to. Doesn't matter about how many misadventures you find, how strong the pains can get or how sad you feel about not feeling like you did in the past. You're an awesome person, and have an uncountable amount of people caring for you, and hoping for you to stay strong.
That's what i have to tell you, stay calm, strong, because even if you can't make it disappear, you can still win agains't it. Diseases are never expected, but are always there, the same goes about pain, and even though they don't seem to disappear, although they get into a degree that you can do nothing about it, that even medicines seem to take no effect.
You should stay always calm, because one time, the pain will go away, and soon, your body will learn how to take the pain, and stay strong even when it seems impossible.
You have some amazing moments to live by now, and many more happiness to live into, that's the only thing that matters. Looking forward for some celebration pics soon! :>
Hope i could express it as well as i thought i could. Stay strong, Katie! We're hoping for you to stay fine :>
You did a great job! Thank you for the encouragement!! There will be many celebration pics to come indeed!
Salguod Wrote:Here's a nice overview. You can also google for the official site and other sites. I don't know how it compares to your current treatment, but your rheumatologist probably does.
Hmmm, thank you for the info. I'll have to ask my dr about this and see what he says.