tag:blogger.com,1999:blog-2055825257424552939.post4645652749594697210..comments2024-02-13T02:35:48.135-08:00Comments on Ankylosing Spondylitis and me: My first 9 months of ASMhttp://www.blogger.com/profile/02870164943855247097noreply@blogger.comBlogger3125tag:blogger.com,1999:blog-2055825257424552939.post-77444853139099603612012-09-03T22:38:34.262-07:002012-09-03T22:38:34.262-07:00I am really enjoying your blog! I seem to see so m...I am really enjoying your blog! I seem to see so many facets of my own story. I was only a few months past my 30th birthday when I woke up one morning with painfully swollen eyes thats were diagnosed as iritis. WIthin weeks, I had a firm diagnosis of AS and have spent the last 4 years learning all that I can about this disease without a cure. I appreciate your story and the fearless way that you tell it. Cheers. :D jessica wallehttps://www.blogger.com/profile/14242433540941528873noreply@blogger.comtag:blogger.com,1999:blog-2055825257424552939.post-77100256645606017362012-08-28T06:55:05.832-07:002012-08-28T06:55:05.832-07:00Hi loved your blog! I have had AS for 40+ years an...Hi loved your blog! I have had AS for 40+ years and i think factors such as age of start of AS, when it was DX ie the longer ago, the poorer the initial treatment was and the results tend to be more extreme. I liked your spaghetti story, I have smashed vertebrae 3 times, so I understood what you ere describing, plus my bones have now become weak - between the metal work I have in my spine, some vertebrae fused, some not and now osteo, the last break was just bending down to pick something up and heating the crack!I have a bracelet with name, DOB (for hospital records) AS and message to take care vulnerable spine, in case I am on my own and have an accident. Jackie xfeline9https://www.blogger.com/profile/13312897216463064900noreply@blogger.comtag:blogger.com,1999:blog-2055825257424552939.post-56834605324790474312012-03-06T16:10:39.379-08:002012-03-06T16:10:39.379-08:00Matt,
Hang in there. I was diagnosed at age 28, a...Matt,<br />Hang in there. I was diagnosed at age 28, and my rheumatologists said it was one of the worst they had ever seen. I was always athletic and took great care of my body, so I was shocked and overwhelmed with the diagnosis. You're right - although it's a chronic, very serious condition, there is a degree of peace in finally getting a diagnosis. <br /><br />I am now age 50, and was diagnosed with SLE lupus in 1997. <br /><br />I learned it was important to keep moving, and that swimming is the best. Water aerobics is great for AS. My rheumatoligists are very pleased that I have continued to swim and be active. <br /><br />Yes, there were times when I could barely do anything at all. But now it is usually pretty manageable. If I sit too much my joints hurt more, but if I stand or walk too much, my feet hurt. <br /><br />It sounds like you are active, so keep it up. <br /><br />There are many articles online about having chronic illnesses but looking good. I look completely normal and like I work out. In some ways, that's the way I want it. But when people want me to go hiking or snowshoeing, etc., I can't. Also, I grieved quite a bit about not being able to go skiing. I'd always loved skiing, and was told I should never ski again. :(<br /><br />But...I found out I LOVE sea kayaking! It is something I'm able to do if I keep the distances to a minimum. <br /><br />So I'd like to encourage you and know that you will be ok, especially if you continue to move around and exercise. I'm not sure if you've found the right meds yet, but keep working on it. <br /><br />Please be encouraged, as I had one of the most severe cases and it's hard at times. (In the beginning, it was extremely hard!!) You will find the right meds, supplement (for me it's fish oil and flaxseed oil). <br /><br />Also, sugar creates much more inflammation. Harvard Medical School (and others) have done some research on it. <br /><br />Another thing that helps is counseling. I am a counselor now, and I've received a great deal of counseling as well. EMDR was tremendously helpful, and my immune system really settled down after I went through some intense EMDR with a certified EMDR counselor. (Be careful, as not many of them are certified.)<br /><br />Feel free to email me if you have any questions. kayakchicky@hotmail.com<br />(Notice my email address - yes, there is hope!!!!) <br /><br />Take care,<br /><br />CherrieAnonymousnoreply@blogger.com