ktallon

Reaching out

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I am reaching out to you my ttf because I could really use some support right now. I have had several appointments at Cleveland clinic and basically it has come down to there is nothing else that can be done for me. I do have to have one more test which is a 24 hour ph test to see if acid is still the culprit of my recurring non healing ulcers. However they dont think it is likely because of how small my pouch is (its so small that it doesn't even show up on xrays or ct scans). I am feeling extremely defeated and depressed. I guess now they are going to try to figure out a permanent feeding solution since its not really ideal to keep a picc line more than 6 months and because of how small my pouch is they cant do a g tube. This is definitely not how i imagined living the rest of my life. I feel like a burden to everyone i am constantly in tear inducing pain constantly nauseated and i can't hold even liquids down. I have lost my job yet again because i am a "liability" and somehow i don't qualify for disability. I also recently got engaged and this is not how i want to start my marriage. I just want to be healthy and a normal 30 year old. Not to mention its really affecting my son he is 7 so he doesn't understand everything. He has been lashing out a lot lately and i don't blame him. Im sorry for babbling on i just don't know what else to do or where else to turn.

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I am so very sorry.  You have had nothing but trouble from the beginning and have experienced every possible complication and then some I think.  Whatever they figure out as a solution, my hope for you is that it will bring you relief from pain and the ability to move on with your life.  If you haven't already, I think you would benefit from seeing a therapist.  Having a mental health professional to talk through this with may be your best option for learning to cope with this hand you've been dealt.  Positive thoughts and prayers continuing for you and your little guy.

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I also am so very sorry for all of your troubles. 
I echo the suggestion by @msmarymac for you to see a therapist. You may also want to see if a social worker can help you and your son get all the help that you need. 
Have you applied for SSDI?  You certainly appear to be disabled from keeping a job. 
Hang in there. We are here to support you.  

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If you have filed and been denied Social Security disability, make sure you file for a reconsideration as soon as possible.  If you haven't filed, start the process.  Having spent 40 years working as a disability adjudicator I can give you some help if you message me your email.  What I can tell you right now is, you either have to meet a medical listing or your physical function has to be less than sedentary work (stand/walk 2 hours, sit 6 hours).  It is a process that takes time.  You always want to appeal any denial (except adverse onset) as soon as possible.  This gets you to the Hearings level faster which as a younger person (under 55) may be your best option.  Hang in there.

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