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.

Check out eBates.com if you do online shopping and are looking for some easy cash.  Use my referral link and I get paid too.  I'v e already made money just shopping for things I needed to shop for anyways.

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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.

No Celebrating for Me this 4th of July!

Yes, I know, its been a while since I've checked in...but in all fairness, its very frustrating when there isn't much to report and I don't have very much to tell you.


Here's a basic overview for those of you that are new to my blog and don't want to read all the posts, or just a refresher for those of you returning. There are so many people that have similar, if not exact symptoms as myself and if I can assist in helping one person find a treatment that works, maybe it will help others too.  I've been writing this in hopes that something I've been through, a test, medication or anything may allow you to talk to your doctor about it and see if it can help you or someone you know that is going through this.

First off, I had bariatric surgery in 2008.  Although I think this surgery contributed to my problems, I'm not certain it is the cause, since the true symptoms didn't start until later after my gall bladder was removed. In spring of 2009, I had started getting sick after ever meal and when I say sick, I mean nausea, vomiting, and extreme abdominal pain.  After avoiding eating and pushing it off as long as I could, since I was in fear of losing my job and health insurance if I needed to go on medical leave, I finally ended up in the emergency room in such severe pain, they determined my gall bladder needed to be removed. The same doctor that performed my bariatric surgery removed my gall bladder and was convinced this would take care of it...but it didn't, it was much worse and till this day I still can't describe how bad it feels except to say it would rate a 12 on the 1-10 scale, and as of today the doctors have still not found a medicine to stop these episodes that leave me curled up in a ball, in tears until it finally subsides, which may be within an hour or may last as long as 3-4 hours. Up until this point, both surgeries were laproscopic, leaving me with minimal scaring. In October 2009, since all the tests were coming back negative, this same doctor decided to perform a open exploratory surgery (leaving me with a scar from just above my pelvic bone, all the way up above my belly button--no more options of a  bikini for me). He stated he removed lots of adhesions (scar tissue) and that this should correct the problem.  Unfortunately, during all this and being on medical leave for so long, I lost my job, along with my health insurance and because of our countries economic problems, my husband had already lost his job previously, leaving us with no income, except unemployment compensation and no health insurance. Plus my employer fought paying unemployment, which meant I had to appeal and did not receive any income until almost 3 months later. I even swallowed my pride and tried to get state assistance, only to be told that with our unemployment compensation we were making too much money...even though we were ready to lose our home and months behind on all of our bills and the only thing keeping us afloat was my 80+ year old father-in-laws generosity, which he couldn't afford either.  The same painful episodes returned, along with a constant pain that was now 24 hours a day, which Tylenol couldn't even take the edge off of and I had no where to turn, since I had no health insurance, leaving me to just live through it, as it continued to slowly keep getting worse.

For 1 1/2 years I researched on the internet.  I tried heating pads, ice packs, cutting out dairy, then gluton, wheat, then sugar...all to no avail. I tried multiple vitamin options and home remedies I found online, but none of these options helped either.  By May of 2011, the pain was just unbearable and I finally called my original surgeon again and begged for help, since I still had no insurance. His office manager referred me to a different hospital's resident clinic, that he also worked out of and they approved me for assistance. For three months, I was passed from one resident to another who each put me through lots of tests, but were not authorized to prescribe pain medications, and all the tests continued to come back negative. The clinic was so disorganized, no one knew what the other was doing and my original surgeon, who was supposed to be supervising what these residents were doing had no idea of what was happening with my care. In order to keep a very long story shorter I'll skip some of this, but needless to say, he told me it was all in my head, I left his office, and he actually sent me a registered letter informing me, I was no longer his patient and they revoked my assistance and expected payment on the services rendered by the residents.  My only saving grace at this point, was that my husband was finally able to find a job and we only had a short wait until the health insurance was being activated.

Once the insurance became active, I went to a gastroenterologist, who was finally the first doctor to give me something to try and at a minimum make me more comfortable, prescribing Vicodin for the pain and also added in Bentyl believing it might be muscle spasms from IBS, but he also referred me to another bariatric surgeon. At this point. the constant pain was still there, as well as I was still having the episodes of severe pain, but now I had constant nausea, was vomiting more than my meals and I was having lots of trouble swallowing. This surgeon did quite a few of the tests over again to verify what the residents from the other hospital did, then preceded to add in a few others, but still..everything came back negative.  Baffled, he offered to do another exploratory (laproscopic this time) surgery to look around inside and see if he could find anything.  Desperate, I agreed and the surgery was scheduled for right after Christmas. ***As a funny side note to all this, during all this time, every time I would lay down in severe pain,  my cat would jump up on the bed, climb on top of me and use his front paws to push down and rub the area in a downward motion that hurt really bad, like he knew exactly what was causing the problems and wanted to help.***  The surgery went perfectly and he explained afterward, that he found and repaired the largest para-esophageal hernia he had ever seen. He could not explain why this never showed up on any of the tests, but my entire stomach and part of my intestine had worked their way up, pushed my esophagus to the side and lodged next to my diaphragm. (***think my cat knew something us humans didn't?)  This was formed from a hiatal hernia, that was left undiagnosed and it was allowed to just keep getting bigger.

Unfortunately, even though the para-esophageal hernia was serious and was adding to some of the symptoms, it did not stop them all and I am still having problems. I'm not sure if this bariatric surgeon couldn't figure out what was going on, or was just too busy to try, but he passed me off to another doctor. So from February to April of 2012 I was passed off from one doctor to another, like a hot potato, as more tests come back negative and no one can solve the problem, but my symptoms are getting worse and the list of symptoms continues to keep getting longer.

Currently, I have an internal medicine doctor, a pain specialist, a gastroenterologist, and a surgeon that are all now working together on my case.  Unfortunately, my insurance company is fighting everything they want to do, including no longer covering office visits, most of my prescriptions, out-service tests, any urgent care visits and I am filing an appeal.  (Even the exploratory surgery that discovered the para-esophageal hernia, which required me to stay overnight in the hospital and that bill alone was $17,000, they only covered $3000, stating it was an unnecessary emergency procedure).  I filed for Social Security Disability in the end of April and still have heard nothing.  So, my doctors are doing what they can, with their priority being keeping me as comfortable as possible and watching the stuff that they are truly concerned over, while finding a solution is basically on the back burner, since their hands are tied because of the insurance company. If I were rich, this wouldn't be a problem, but I would have to win the lotto first, what chances do I have?

None of the doctors have given me a specific diagnosis, but they believe I have abdominal nerve and muscle damage which is causing the 24/7 pain, which there is no cure for.  They decided I am not a candidate for reversal of the gastric bypass, since they believe the surgery would cause even more damage to the nerves and muscles, especially since my body is not absorbing vitamins like its supposed to and they still don't know why that is.  Its been suggested that the episodic pain I have after eating is visceral pain, but they don't currently know what is causing it and no medication can stop it. The edema in my feet, ankles and calfs is getting worse and is now including my knees.  I can't stand for any length of time, walking is painful, stairs are out of the question,  and at times it hurts so bad, I can't walk at all, so I use my office chair that has wheels to roll myself around the house...fortunately we have wood floors.   In the process of trying to manage the pain, I've learned I am now allergic to medical tape too, so using the fentanyl patches didn't work, since they caused a rash and itched so bad. Methadone made me so tired, I could not stay awake, falling asleep sitting up anywhere. Currently I'm on a combination of Neurontin for the the nerve pain; Cymbalta for the muscle pain, as well as depression; morphine and Percocet.  It doesn't eliminate it all still, but he is getting closer, unfortunately with having to take all of these drugs, I'm often dizzy, my depth perception is impaired, I'm often tired and driving is out of the question. 

Here's my current list of symptoms, if you want to do a comparison:

Consistent (24/7) abdominal pain. Often worse at night.

Episode Pain—double-over, severe abdominal pain, usually after I eat
                         —happens about 2-3x a week.

Shoulder/back/arm pain---burning pain---left side—mostly at night.

Chest Pain---about 1 x a week.

Nausea is not constant anymore, but just happens now and then,

Vomiting occurs about 1x a week now.

Heartburn---1-3 times a week.

Bulge that occurs on the right side of my upper abdomen after vomiting or 
                       sneezing/coughing hard…I push it back in….maybe a muscle spasm?

Constipation and diarrhea—alternates consistent

Hiccups -on a daily basis, especially at beginning of meals.

Often feel full with just a few bites. 

Extreme amount of gas---that is causing pressure, which I think is some of the pain.

Edema----legs, ankles, & feet—some days up over knees—most days can barely walk

Low blood sugar ( I have a meter and test it) on average 2-3 days a week.

Muscle cramps—legs, feet, hands

My blood pressure has been running low—
                     over the last couple of weeks 103/62, 101/57

Swallowing problems—mouth is really dry

Urgent need for the bathroom, but often can’t urinate
                  —sometimes have to really “push” to go.

Dizzy Spells—have fallen a couple of times.

Vision problems--Points when my vision in blurry/ double vision left eye.

Current list of medications:

Furosemide (Lasix) 40MG Tabs—1 every morning.

Chlordiazepoxide/Clidinium Caps (Librax)---1 to 2 capsules, 3-4 times a day, as needed for spasms.

Omeprazole (Prilosec) 40MG capsules---2 x a day

Ondansetron (Zofran) 8MG Tabs-when needed nausea

Multi-Vitamin (Over-the-counter)---1x a day

B-Complex (Over-the-counter)—1x a day

Vitamin D (Over-the-counter)—2000IU---1x a day.

Allegra (Over-the-counter)—1 every night at bedtime.

MS Contin (Morphine Sulfate ER) 30MG tablets –3 times a day

Oxycodone/Acetaminophen (Percocet) 10-325MG TB- 1 every 4hours as needed.

Gabapentin (Neurontin)---300MG 3 times a day.

Cymbalta----60MG—1 every night at bedtime

                                                                                  
Well, not much else to say for now.  My pain specialist I see at the end of July and I'm not scheduled to see the Internal medicine doctor until September, but am supposed to call if anything gets worse.  The insurance company is doing nothing more than delaying my own doctors from helping me.  Nice huh  What the hell are we paying $700 a month for?







Sorry to have to do this update:
I apologize to all readers that would like to do comments.  Unfortunately, it was necessary to block comments because I have an immature and ignorant family member that has decided to use this site for fighting grounds between my immediate family and his/her own. They decided it was okay to name name's and bring up personal family issues rather than discuss them with us like an adult.  This site is intended strictly for individuals with severe abdominal pains and issues that are similar to my own and  that are looking for solutions that their doctors may have overlooked or hasn't considered. I won't allow the comments section on my blog to become their war grounds, as it is not what this site was intended for.    

In the future, if you would like to make a comment, please send your comments to my email:  ShariLynnGardner@gmail.com and I will post them all together under one heading, as long as they are regarding this topic.  So please email me and look for your comments there.  Thank you, I am sorry for any inconvenience this may cause.