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.  

Did you know???

Hi everyone,  actually writing from a hospital bed this morning, but wanted to update you all and inform you of something I learned too. I've been here since Saturday night and fortunately, get to go home some time this morning.

For any of you that have vitamin deficiencies, are on lasix (diuretics), or have had bariatric surgery and that have any of these symptoms, see a doctor and get it checked out.  Trust me, you do NOT want to go through what happened to me and I know from now on, I will be much more careful to be listening to my own body.

Friday morning started like any other typical day, when the family is getting ready to leave to go camping for the weekend....packing, etc.  For myself and my family, we take the pets with us, which means the dog and two cats as well (its not a crazy as it sounds, they actually like going, hanging out on the dash of the RV and getting a different view than what they get from home, since they are indoor kitties).  Anyway's, while my husband and kids went into the grocery store on our way, I opted to stay in the RV with the pets and wait, especially since with my edema being so bad, I can't walk very far.  My husband even made sure we had access to a golf cart for the weekend, since our lot, where we were camping with friends was so far from everything else, he knew I would need it.  While they were shopping, my stomach started cramping up, like always, even though I did think it was a bit odd, since I had not eaten yet, but I took my medicine and laid down.  Unfortunately, it didn't stop there and my hands started to cramp up, I couldn't move my fingers, then my feet started to go numb and I panicked.  Thank God for cell phones.  I finally managed to dial my daughter after several attempts and they all came running.  My husband thought it was my blood sugar that was low, so he made me chew to glucose tablets, I drank 1/2  a bottle of Gatorade with my daughter holding the straw and then ate half a banana and after a while started to feel better.  My husband was already on his way driving me to the hospital by this point, but since I thought I was okay, we turned around and proceeded on and went camping instead. We had a great time Friday night, and all day Saturday, even though all I did was sit around and talk to friends, it was nice getting out of the house.

After dinner on Saturday was when the nightmare started.  As per usual, my stomach started to hurt, so I said good night and went to the RV, while everyone else did marshmallows and such.  I took my pain medicine and my other nighttime meds, figuring I was going to go to sleep. But, the pain got so bad, it wasn't letting up and the same cramping feeling was starting in my hands again. I finally called my husband and told him I wasn't feeling good, so he would come inside.  By the time my husband and daughter's got to me, I literally could not stand up, my legs felt like they were paralyzed and my hands too. My stomach hurt so bad I was begging for anything to make it stop. I can honestly say, I'm glad I don't remember too much.  My husband carried me out to a friends car, met the ambulance and followed to the hospital, and then I had to get transferred to another, larger hospital from there.  My potassium was so low it was causing hypokalemia, which is basically a paralysis/cramping of the muscles from the potassium in my blood being too low. The normal symptoms include the arms and legs cramping, but for me, it included my stomach too, which took what I normally go through and jacked up the pain ratio triple fold of what I usually go through, which is bad enough.  My daughter told me, I was begging to be knocked out. I had to be put on the cardiac floor and on a heart monitor because it can cause severe heart and kidney problems. They had to give me low doses through an IV for the last 3 days to build it back up to a low normal range, and now I'll take pills to build it up more once I go home. If I had continued to ignore it, I might not be here to write this, so please listen to your own bodies.  If your getting strange cramps, numbness, or something isn't right, at least call and check it out or it could be too late.  I got lucky and would hate any of you to have to go through what I did.

Well, pain specialist this afternoon, then more appointments over the next few weeks with more tests...oh joy..will keep you updated.  Oh and SSD denied my claim because of my age and education, as if that makes a difference or not on whether I can walk, drive or be comfortable. I see a lawyer this evening as well.

Here's the new scoop! Some good, some Not.

Well, just got back from seeing my internal medicine doctor.  Since nothing with the edema has changed, except it getting worse...she is scheduling me for cardiac testing to rule out something being wrong with my heart and doing another venous ultrasound, to look for blood clots in my legs again.  She took a bunch a blood to work up again today and I go back to see her on the 30th of August.  Until then, she is letting the pain specialist figure out the meds, since she doesn't think they are causing the edema anymore. Oh, and the funny one, not sure I have enough pillows in my entire house to do this, but I am to lay down for 15 minutes, 3 times a day with my feet raised to a 45 degree angle above my heart, so the blood will drain down and stop some of the swelling, hopefully.

I see the pain specialist on Monday.  She said to suggest to him that he replace the Neurontin with Lyrica. AND she wants him to increase my Cymbalta to 90mg until I can get in to see the psychiatrist for my depression and anxiety disorders.  That's it for now.  Will let you know how next week goes.

No News IS Good News, RIGHT?

The last few weeks have been interesting to say the least...I had no idea that medications could be responsible for so many dizzy spells, falls with the scrapes and bruises to go with it, and just plain old clumsiness.  I am dropping everything.  I've wrecked or broken so much stuff it isn't funny, including 2 keyboards for my computer from spilling coffee (fortunately, we had extra keyboards in the basement or I wouldn't be writing this).

No real news on much going on. The pain doctor changed my meds 2 days ago, so hopefully the falls will stop, and I see him again on the 30th, but I can already tell with only 2 days, since he is weaning me off one of the medications, the abdominal pain is increasing again..  I am seeing my internal medicine doctor on the 26th, since the edema is getting worse.  At points it is swelling up over my knees and making walking extremely painful or impossible. Besides I have this weird double vision thing going with my left eye.

After lots of phone calls, I finally heard from social security only to be told I had a doctor's appointment (I ended up talking to the examiner's supervisor, since she never mailed me the info. and I would have missed it). Anyways, I had to go to a special office for them, new doctor...turned out to be a psychiatrist and they wanted a mental health exam.  I wasn't truly surprised by the diagnosis, but it is more real when someone actually says it...so I am now officially diagnosed with chronic depression and a generalized anxiety disorder. Not sure what happens next with that, since they don't prescribe meds or set up doctor appts. they just needed the information to determine my eligibility for SSD..my doctor will have to decide what will happen next. So at this point, hopefully with these 2 diagnosis, plus the diagnosis for the abdominal nerve and muscle damage that is the cause of the constant pain, and since I am still losing weight---down to 125 now, which looks pretty anorexic if you ask me, they'll approve me.  They won't even look at any of the other stuff, since the doctor's don't know why or what's causing it, hence no diagnosis as usual. Gotta wait and see.

Will check in again when I know more.  Hope your all enjoying your summer.
Its been HOT,  HOT,  HOT, here in Michigan.