NEWEST UPDATE AS OF JUNE 12, 2014

Hi everyone.  I sincerely apologize for taking so long to update my site. I've had a lot of issues lately with my vision and my hands going numb, which makes it very difficult to type and see what I've typed. Fortunately with technology, I now have a program on my computer that reads back to me and types whatever I say into a microphone. This will work for a while, but not sure about the future as my vision deteriorates.

I'm sad to report that even after all this time, the doctors are still trying to figure out what all is wrong with me.  I can't remember if I noted earlier or not,  but I did finally get approved for disability. And the only good thing to come out of all of this is that since I am permanently disabled and can't work, my student loans are being paid off, so to speak. SSI just makes them go away. It's a shame that I am only a few short classes from my MBA, but it is what it is. I'm learning to just give up on that dream.

Currently I am going back and forth between my regular doctors and the doctors at the University of Michigan.  It is kind of like a team of doctors now, all working together for me. Much better than when all this began and I was consistently referred back to my original bariatric surgeon and no other doctors would talk to me.  If your in that same boat, I highly suggest requesting your doctor to formally release you from being his or her patient, so you can find a new doctor willing to help. It took me a few, because everyone insisted this was all in my head and treated me as if I were just seeking out pain meds. It took persistence and a couple of exploratory surgeries for them to start believing me, especially because the CT and MRI scans and all of the other tests they tried consistently came back as normal.

To this day I still don't understand how a para-esophageal hernia that was so large it had my entire stomach and part of my intestines lodged into my diaphragm didn't show up on any of the tests.  The same occurred with the mesenteric hernia. The U of M doctor said it could have been there since my original bariatric surgery and the only reason it was caught was because my potassium level dropped to zero while on a camping trip with my family and my intestines decided to "twist" at the same time.  This led to the most excruciating pain I have ever felt, and a ambulance ride to the nearest hospital which was almost an hour away. Fortunately I don't remember most of it and my family and friends had to fill in all the details of what happened.  This little hospital saw the "swirling motion" of the hernia and said they were not equipped to handle it, so I had another ambulance ride to my usual hospital, where I spent 3 days on the cardiac floor while they slowly raised my potassium level back up to normal. (If the potassium level  is raised to quickly the patient is likely to have a heart attack).  However this was the end of July and they still missed the "twist" and it took getting into U of M months later and finally (close to a year later)  having that repaired on May 1st (2013).

Today, the doctors are trying to clean up the train wreck that was left behind after having these surgeries. Basically, my body is fighting itself and conditions that I may have been born with, that were just hiding inactive  or problems  caused by the surgeries are all coming to the surface at once. The reason my potassium level dropped is because of the abdominal nerve damage and the damage to my intestines that has caused my intestines to no longer absorb the minerals and vitamins from eating normal, everyday foods. Needless to say I now have to take many different vitamins every day to keep all of those levels normal.

Between July 2012 and the surgery in May 2013, I lost an extreme amount of weight and was all the way down to just 103 pounds, which if you imagine someone at 5'6" was not flattering. I looked anorexic and because my body wasn't getting the vitamins it needed all of my hair fell out, making me extremely depressed and looking like a cancer patient.  Even now, over a year later my hair is still falling out as fast as it is coming in, so I own many wigs.  Also, as an added bonus, I haven't had a period in over 3 years. It seems my body just skipped right on into menopause, even though I'm only 46.  But, I won't complain about this problem...woohoo, no more cramps.  I'm thinking someone up there in heaven decided I had enough abdominal cramps and there was no reason to add more.

So... Now I'll tell you about the rest of it.  I still and always will have lymphedema, since there is no cure. This beside the abdominal pain, makes it hard to stand or walk for longer periods of time because it increases the abdominal pain and my legs and feet swell.  No heels for me :(  

The doctors think that because I lost so much weight, my body was unable to hold my head up, which resulted in 2 bulging disks (C5 & C6) in my neck...this causes neck pain as you would imagine, but also burning in my shoulders and down my arms into my hands, making them numb and tingling.  Sometimes the nerves are pinching so much I end up with wrist drop and can't use my hands at all. I also have 2 bulging and one collapsed disc in the lumbar part of my spine.  Doesn't really hurt but occasionally leaves my toes numb. The spine surgeon wants to do surgery, but the neurologist wants to do more tests.  He thinks more is going on.

The neurologist believes I have an autoimmune disease (which I probably have had all along, but the surgeries turned it on so to speak).  He says the discs in my back do not explain the other symptoms.  For any extra amount of effort I put out, my arms and legs get extremely tired. I have bended down to pick something up and then I can't stand back up with out help. When I don't have insomnia. I have been sleep walking, which is something I used to do as a kid.  I developed central sleep apnea, which I did not have before the bariatric surgery, since they had me tested but I have it now. My brain is not telling my body to breathe when I am sleeping, so now I have a c-pap machine. For the last almost 3 years I have had double vision which has been steadily getting worse.  The neurologist at U of M had me see  a neuro-ophthalmologist who told me I have Exotropia Convergence Insufficiency. Meaning my eyes are no longer working together because the muscles are too week. There is a surgery they can do, but it only has a 30% success rate.  So basically I'm at approx. 60% of seeing double currently, by next year it will be at 70%, and then increasing to 80, 90 and then 100% double vision, so technically I'll be blind.

I'm  just hoping for a miracle at this point or maybe the neurologist can figure this out and at least slow it down, because I have way too many things on my bucket list that I have not been able to do or see yet. I go back to see the neurologist at U of M in the beginning of July, since he's waiting for all of my blood work to come back. I have to go back at the end of the month to have them do a repeat series. I've seen some of the results already though, through my patient portal on their website and the ANA (Anti-nuclear Anti-bodies) test came back positive for an auto-immune disease. Now, he just has to figure out which one.

I promise I won't stay away so long and will keep you all posted. Hopefully something I have gone through, is something your doctor can check for and help you reach a solution.

Take Care,
Shari