Dave

My diagnosis story is similar to many here: had severe pain as a youth in high school that prevented me from playing sports, especially in my hips. Went undiagnosed for about 10-12 years, at which time the pain grew to my spine that eventually fused and left me with “mild” kyphosis. Ive suffered with heel pain, multiple iritis conditions, and flare ups of pain and swelling in various places of my body over the years. I have limited mobility in my neck, having only one vertebrae that is not fused. About 8 years ago my rheumatologist put me on enbrel which has significantly reduced my pain and I think the progression of the disease. I am very happy and grateful to say that I now live a quite “normal”life mostly pain-free and relatively active.
I was divorced about 3 years ago, and since I am self-employed I can find no insurance provider that will take me because of my condition. I’ve been able to get enbrel last year through the Encourage Foundation, but my income level may prevent it this year. At $1200-$1400 per month, I worry how I will afford it. Also, I’m concerned about future medical costs that are unprotected with insurance that I may encounter. Now 47 years old, it has become a big concern of mine to secure my health future with some sort of insurance.
I think the biggest effect this has had on me (other than the obvious pain) is depression. Now being divorced and single, I’m very self-conscious about my physical appearance. A man with a stooped “hunchback” stance is anything but attractive. Although it is not as extreme as some, (very thankful for that), it definitely is noticeable. Ironically, I never used to notice it before because from a front perspective, the view I see while standing in front of a mirror, I don’t notice it. It’s when viewed from the side that it becomes obvious. Now having notice that, I’m much more reluctant to go in public, and especially to try to date or meet others. I know that’s not the answer, but I have a difficult time overcoming what to me is quite obvious. It frustrates and angers me. I don’t want to be “abnormal”.  I don’t like having being different, at least this way.
I know there are many with conditions/ situations much worse that mine, and I need to put myself in perspective with all that. And I think I will with time, but right now it’s definitely causing depression  and affecting my day-to-day life.
This has been more of a vent for me that anything else. I’m not looking for any sympathy, really, as I know my problems are dwarfed by the situations of many of you out there. Thanks for allowing me to share my story. I sincerely wish all the people on this site the very best and with their own personal struggles and hurdles. Chronic diseases such as this can be crippling, both physically and emotionally, so help for people through websites like this are really important.
Dave
South Dakota United States of America
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One Response to “Dave”

  1. Dear Dave,
    Thank you so much for sharing your story with us. Thank you for being so open and honest, I know that it is difficult to do this, it is one of the reasons I ended up being Face 62 on the site I created. It takes a lot of courage and I have found some amazingly courageous and strong people in the Ankylosing Spondylitis community. I remember years ago I was with my husband in a parking lot and seen an old woman walking very slowly and hunched forward and I whispered one day I am going to be like that, and my heart went out to her. My husband looked at me with tears in my eyes and said you already are. Like you the front image appeared “normal”. I went home and did a mirror test and yes I did look just like her. My life changed from that moment on. We all struggle with the ups and downs of happiness and depression. One of my main goals with Faces was not only to raise awareness, but to bring us together on a much deeper level, of brother hood of sorts. The need to know we are not alone, and someone understands my pain and confusion and fears was more important to me than anything. I wanted people to know someone out there really cares and understands. Thank you so much for helping me do this.
    Sincerely Cookie

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