Wow, time has just flown by, and here we are in 2015.

I am sorry I haven’t updated recently and I hope you understand that it wasn’t intentional. Between the normal problems I’ve continued to have with my stomach (I believe I have 1, possibly 2 more hernias, so I see the gastro doc again in a couple of weeks), the neuropathy that has managed to keep part of my left forearm, hand, ring and pinky fingers numb for a constant 3 months and counting, and the double vision issues getting worse and making it difficult to read, I just haven’t truly had the passion to write or blog. I hope I haven’t let any of you down.  I’m certain there is at least one of you that is reading this that can understand how depressing it can be when you feel like you’re alone in this and that you’re a burden to your family. It’s been especially frustrating that no one seems to be able to figure out what is happening to me.

There hasn’t been much in regard to what the doctors have learned about my condition and I feel like the hot potato that has been passed around. My PCP (primary care physician) and pain specialist have tried really hard, but both have said they don’t know and are doing their best to get me to the correct specialists. I’ve been to gastroenterology, neurology, neuro-ophthalmology, rheumatology, gynecology, a sleep study doctor, and as of this afternoon an endocrinologist. I’m not sure if he will figure it out either, but more bloodwork in the morning and then back to the neurologist.  Over the next month I have appointments to see all of them again.  In November I did have surgery on my left eye to tighten the muscle, so my eyes could start working again together. I had my follow up with him yesterday and says the residual double vision may correct itself in time, but he still didn’t know what caused it or why. Plus, at the rate of worsening I would be blind in 5 years without the surgery, so another surgery done, new glasses with bi-focal lenses and prisms on the way…guess we’ll see…excuse the pun..lol.

Anyhow, your caught up and no more depressing info.  In my spare time, I have been helping my daughter with her Etsy store. I’ve been doing all kinds of crafts and have found that even with my numb fingers, I’m still able to do quite a bit on my good days. There are lots of tools to help people with multiple disabilities…I’ll share a list when I post next.

So if you like, please check it out. Also, my daughter is now a Jamberry Nails Consultant too.  Check it out please…she’s 23 and my husband and I laugh because some days it feels like she will never move out…but on the other hand, it will be really hard when my baby girl and best friend leaves the nest. ;)

https://www.etsy.com/shop/PleinDesign?ref=hdr_shop_menu

http://rebeccaplein.jamberrynails.net/shop

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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

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.

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.

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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Sorry I haven't updated in SO long...

Hi everyone,

I apologize for not posting lately, unfortunately, I just haven't been well enough or up to doing it, but I'm biting the bullet now, since I could really use all your prayers and you deserve to be updated for following me this long.

Let's see....to get you all updated since my last post in September: The colonoscopy I had done the 25th of Sept. came back normal. This is actually a good thing, although it doesn't help in stopping any of my symptoms, its piece of mind that it isn't cancer, which runs in my immediate family. My team of doctors are at a standstill, at this point and just treating symptoms, wanting me to go to U of M, which I will be doing after the first of the year. Currently, with my health insurance maxed for this year, I have no choice but to wait until January. The lawyer is still working on my appeal for social security disability, no hearing date yet, but received a new packet with more forms to fill out a couple of days ago....so, it seems we're starting to get somewhere.

I still have chronic 24/7 abdominal pain, and the pain increases throughout periods of the day regardless of if I eat or not anymore,  nausea, vomiting, lymphedema,  depression, severe anxiety and panic attacks, vitamin deficiencies and malabsorption. I continue to keep getting kidney stones and UTI infections, I'm having vision issues such as blurriness and double vision, numbness in my hands and feet, I have not had my period since May because of the weight-loss, and I am constantly cold. I am covered in bruises, scrapes, and cuts from falling, my legs will just give out at times and can't hold my weight up, even though I'm still losing weight and am now down to 110 lbs. I look anorexic, I'll post some pictures, so you can see just how bad it really is. AND, although its been thinning, my hair is now coming out in clumps. I have bald areas and am looking into wigs and extensions. I'm embarrassed to even leave my house.

Picture differences:

May 2010---about 150 lbs., size 8:

March 2012--about 125 lbs., size 4:

November 2012--about 110 lbs., size 0-1:

Hopefully U of M will reach some conclusions, but for now I am starting to get scared.  The more weight I lose, the closer I feel this is killing me. I'll update again, when I know more, probably after the holidays, so Merry Christmas and Happy New Years too....may 2013 be a better year for all.

favorite color anyone? Blue, purple, green, yellow?

Hi everyone,

Sorry I haven't checked in for a while, but my concentration is really lacking and its been truly difficult to get anything done.  What would normally take me about a 1/2 hour to write is now taking 3 to 4 hours, since I either get sleepy and doze off at my desk or I just stare at the screen and can't think.  As difficult a decision it was for me I finally ended up having to take a leave of absence from school too. Especially since I have only taken one real break the entire time from starting on my associates at age 39 (after getting divorced and deciding to start my life over....this was even before I had ever thought of having bariatric surgery) and I'm half-way through to achieving my masters (MBA). I have never been able to use the degrees, but always thought, even after getting sick, that once I got past all this, the more education the better to make up for lack of experience, but at this point finishing may be a moot point and just for me, if I ever get to go back.

There actually isn't a lot to tell. Once I was finally able to get the last set of Doppler ultrasounds done that my doctor wanted of my legs, she declared I am officially diagnosed with Lymphedema and even though I have not been driving since around February because of the narcotic pain meds, its now official with the Lymphedema that I can no longer drive a car.  I guess there is too much risk of putting others in danger, such as if I got a cramp in my foot while driving.

Since my last emergency adventure, that left me in the hospital from July 27 through August 1 because my potassium level was too low, the doctors have been switching up medications and dosage amounts, but it is wreaking some havoc. The experience as a whole last time truly scared me, so it seems I'm having a lot of panic attacks, especially when the pain begins to get severe.

My doctor has had me on Celexa now for almost a month, but I don't notice any difference.  On Monday, the 27th of August I had a really bad episode of pain again (although strange, I had not even eaten anything) and ended up having to go to the emergency room.  But, of course, after being there for 3 hours and finally getting to see a doctor, the pain medication I had taken before going to the hospital finally kicked in and it subsided, so they just drew some blood and sent me home. My internal medicine doctor added Xanax for me to take during those really bad times, to see if it can keep me calmed down and avoid the ER route until they figure this all out. She called it my short-term security blanket and if the Celexa doesn't start doing something she will increase the dose.  I am also scheduled for a wonderful colonoscopy on the 25th of Sept. with my gastroenterologist. Double checking all bases, which is good, but not looking forward to drinking the stuff they make you drink the day before....eeewwwww.

My pain medicine doctor decided to stop the Neurontin and switch me over to Lyrica, which was fine for the pain, but I was sleepwalking and scaring the hell out of my husband. With the decision made, that was way too dangerous, they took me back off the Lyrica and went for a little while with nothing...but considering I am already down to 120lbs., the nausea and vomiting flaring back up into full gear was not a good thing and they knew they had to do something, or I would end up on a feeding tube. So now, we are trying to do just a smaller dose of the Neurontin.  I was up to 3x a day before, but now my body cant even seem to handle once a day.  I'm still falling, getting bruises and scrapes I don't remember,  knocking into things or knocking stuff over, plus I have fallen out of bed 4 times in just the past 2 weeks. Yesterday's fall was so bad, I didn't get up right away thinking I might have broken my arm. Its not broken, but it is sore, sore, sore and the bruises are coming, along with bruises on my knee, my hip, my upper thigh, my shoulder blade....yeah, ya could say I did a pretty good job.