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Through-Glass Offline
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Name: Jessi
Age: 27
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Location: Eastern Tennessee

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Exclamation Ankylosing Spondylitis - August 16th 2013, 01:04 AM

Hi, everyone.

So, I have struggled with pain and stiffness in my neck and shoulders for as long as I can remember; but over the past year, things have escalated. I've been to the ER twice for debilitating pain in my back and lost a job because of it. While the ER doctor did confirm that I had widespread inflammation around my spine, they did not run further tests because I am uninsured and could not afford to pay thousands of dollars for an MRI, blood test, etc.

My father and my aunt both have Ankylosing Spondylitis (it has a strong genetic component), so when I recently found a sliding-scale clinic I spoke to the doctor about how my symptoms correlated with this disease. After a physical exam, he confirmed that it is very likely that I am suffering from the same disease, though there is no definite way to diagnose AS. Again, further testing and treatment was not an option due to the expenses involved.

I need to see a rheumetologist. But, as I said, I do not have health insurance and cannot afford to pay out of pocket. My flare-ups are becoming more and more frequent, and I am deeply concerned about the possible complications related to this disease (bone fusion, loss of mobility, heart and lung problems, etc). Not to mention that I am in pain from the moment I wake up to the moment I fall asleep, have difficulty walking up and down stairs, and cannot stay in one position for very long before the pain becomes severe (I constantly have to alternate between sitting/standing).

I have considered applying for Disability Medicaid/SSI, so much so that a couple months ago I started the application process. But I had doubts about whether or not I needed these services, so I continued to work and attempted to live a normal life...but things are only getting worse, and now that I know that this condition is chronic, I feel like that might be my best bet. But I'm not sure if the fact that I did not complete the application process last time will affect my chances of being approved.

I realize that this is a lot of information, and I'm not even sure if anyone on here can relate to my situation. But, any advice and/or words of encouragement would be greatly appreciated. <3

"For the first time
in a long time,
I can say that I wanna try.
I feel helpless for the most part,
but I'm learning to open my eyes.
And the sad truth of the matter is,
I'll never get over it,
but I'm gonna try
to get better and overcome each moment
in my own way"

Motion City Soundtrack, "Even If It Kills Me"
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Philomath Offline
Love is > your mistakes
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Name: Christina
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Re: Ankylosing Spondylitis - August 17th 2013, 01:10 AM

Hi Jessie,

I am really sorry you have to put up with this debilitating pain. That is dreadful and you should do whatever possible to get the help you need.
If you contact the Social Security office, you should be able to ask if you have to start the process again or if you can continue where you left off in applying for SSDI and Medicaid before. Explain to the person you speak with that your condition has gotten considerably worse and that you are unable to work or do daily tasks as you used to be able to.
They will be able to let you know what you can do and how to proceed with getting help.
You can find a lot of information on the Social Security Administration website. You can also ask questions and apply online. There are also many other services available online as well.
Hopefully this is helpful to you and that you can get Medicaid and SSDI to help you cover your expenses for treatment and testing.

"i don't care your intentions. I just want you to know my self-hatred never took me where I wanted to go. At the end of the day...I can pick at the pain but I can't cut it away."
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ankylosing, spondylitis

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