Friday, June 28, 2013

Update! Sorry its been so long!

Hi everyone,  I apologize for not posting in such a long time, but a lot has happened and unfortunately I am still having some very rough days and haven't been up to writing.

Since I last wrote to you all, I had the surgery on May 1st to repair the mesenteric hernia.  The surgery went exactly as planned, fortunately everything went back to where it is supposed to be and the mesenteric lining was sutured closed, so this shouldn't be able to happen anymore.  But, as usual for me, nothing is easy...I am having other complications now.

Due to the fact that I have lost so much weight, my body is having a difficult time holding my head up. Between X-rays, an MRI and an EMG, it was discovered that I have cervicalgia and cervical radiculopathy. Basically it means the nerves in my neck are being compressed by bulging disks and arthritis. This is a condition I could have had for years and just never had symptoms, but with everything else that has happened this has decided to flair up and causes my neck to hurt.  I get a burning sensation in my upper back and across my shoulders into my upper arms and my hands and fingers go numb. Some days my wrist just hangs and I can't even use my hand at all, its called "wrist drop."  This is part of why I haven't been on here in a while...hard to type when you can't feel your fingers. I am supposed to start physical therapy and possibly some epidural injections and if that doesn't help another surgery will be on my horizon.

Also, I have been having vision issues since before Christmas that have continued to get worse.  A trip to the eye doctor (an MD, not just a vision center) revealed that my eyes are no longer working together.  This means each eye is sending a different picture to my brain, causing extreme blurring, double vision, and some really bad headaches. They prescribed new glasses with a prism in the lenses that are forcing my eyes to focus together...or at least that's the theory.  I am supposed to go back in a month for more tests to see if this is helping or not.  No one seems to know why this is happening, so I don't have any answers.

And of course, I am still having stomach issues....this was expected, since the doctors were not sure just how much nerve and muscle damage was done during the previous surgeries. The nausea has not gone away, I still have the constant pain in the upper left quadrant of my abdomen, and I still get the unexplained chest pain that feels like I'm having a heart attack, which of course just adds to my anxiousness and panic attacks.  But, the right side is much better and I no longer have the bulge when I sneeze or cough that I used to have to push back in. I'm still taking the antidepressants and some days I just don't want to get out of bed. I look like I'm anorexic, my hair is growing back extremely slow so I'm still wearing wigs, and I hate to look at myself in the mirror.  I know how bad I look, specially when complete strangers walk up to me and say they'll pray for me. I'm trying to stay positive, but some days its difficult and I have pity parties by myself under the covers, until I force myself to get up.

On a positive note, I finally got a date for my hearing to appeal the denial of SSD.  Hopefully, once they see me, they'll understand that working just isn't possible.  Also, I did finally find a lawyer that is considering my case against the other doctor(s), but I'm bound by attorney-client privilege, so I can't tell you anymore on that front, just that my fingers are crossed.

That's it for now.  Not sure when I'll be back with another update, but I will try not to wait so long. Thanks to all of you that are keeping me in your thoughts and prayers..I really appreciate it and I will do the same for all of you.

Friday, March 15, 2013

Messenteric Hernia??

Hi everyone,  here's the latest update for those of you interested.  Currently, I weigh just 103 lbs. and the discussions of putting in a feeding tube are still being decided by the doctors.  I am now seeing a doctor at the University of Michigan.  She scheduled me for a CT Scan and another EGD.  I had the CT on Sunday the 10th. And, amazingly, the doctor called me on Monday afternoon, to let me know I have a messenteric hernia. She said it definitely needs to be repaired, but wants to do the EGD to make sure nothing else was missed. So, on the 26th, I'll have EGD at 9am and then I meet with the surgeon at 12:45.  I'm not sure what all reparing it will entail.  My understanding is my intestines are pushing through holes with in the tissue between the muscles and where the old layer of fat used to be. The biggest risk is it could strangulate at any moment, so she just said to watch out for anything more severe pain wise, in comparison to what i'm already used to.  She is hoping my stomach will hold off until the EGD. Anyways, that's it for now, I'll update again at the end of the month, when I know more.

Tuesday, February 5, 2013

Wait, wait and wait some more...

Just a quickie update...went to see the doctor at U of M this past Thursday...she was very nice, but needs time to review all of my medical records..so I go back on the 28th.  In the mean time, she wants me to see a nutritionist and try to take in 2000 calories a day. It doesn't seem like much, but its very hard for me. I'm down to 103 now and they are trying to avoid the feeding tube route, but it may end up no choice.   Still waiting for a SSD hearing date. I have a phone interview with SSI this week. Hopefully this will help out with paying for everything, especially since because my husband got laid off, they cancelled our health insurance.  U of M can't do any tests, etc. until I have some kind of cverage...so here I wait.





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