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What happened today and an explanation of why I have no fight left

Saturday, October 29, 2011

I have to say thank you to Amy for sending an explosion of support my way. That's definitely not something I'm used to. I'm the kinda girl that some people attempt to envy but most people just hate. I've spent most birthdays alone - my 30th birthday this summer was pretty much ignored by everyone. I can't tell you the last time someone asked me to come to a party or event out of anything but pity and then stayed my friend afterwards. People tend to want nothing to do with me, especially after I open my mouth. I'm too intelligent for most people to want to talk to, while I'm too stupid to be able to appear perfect the way people tend to expect. My past is full of pain and anguish and constantly having to fight for anything and everything - including just to keep what little I have.

30 years of constantly fighting my body, begging people to stop physically hurting me and emotionally torturing me, and failing at finding any reason for my existence has worn me down to the point I know I can't fight the doctors any longer. They refuse to believe anything I say and only wish to drug me with medications that make it impossible for me to be an intelligent human. They can't imagine that my physical issues aren't all in my head. They're constantly finding fault in anything I say and use it as a reason why I don't deserve medical care. I know it makes no sense, but this is always the way it has been. My mother causes medical problems in herself (alcoholic, long time smoker, never ever exercises, overeats constantly even with diabetes, refuses to get help for mental health conditions that destroyed any chance of me having a decent childhood, etc) and because of this, doctors tend to get annoyed with her constantly coming up with things that are wrong with her but then refusing to change her lifestyle. As I was growing up, whenever I'd have to go to the doctor she'd screw up the story or blow something out of proportion because then she'd get attention. Thus too often I didn't get help for what was really going wrong. Since my father wasn't around during my childhood (constant work trips, not actual abandonment), I had no one to turn to for help. My only sibling, an older sister, always found ways to be out of the house so I was the one to deal with my mother all the time.

Thus I can't rely on my mother. My father can't handle any medical issue (he thinks if you ignore it, it will go away) and he's not happy that I'm currently refusing to deal with my mother until she gets some mental health help. My sister is wrapped up in her life and tends to be OCD - what is right in her head is the only possibility so because I'm different than her I'm usually thought of as unworthy.

The friends I've known in real life tend to run away from me. As one said, "you're too sick to be friends with" and "because you can't eat like me you're destroying my life" so at this point I can't count on any of them for anything (not that I ever could). I haven't had a best friend in 9 years because when I let someone get close they tend to use and abuse me or leave me when I'm most desperate for their help.

So hopefully everyone can now see why I don't see a reason to fight anymore. The greatest dreams of my life have past their expiration date, I haven't seen much of a future for myself since I was about 8, and my medical issues have just continued to worsen. Eventually everyone reaches the end of their strength.

The irony of my life is that no matter how many times I should have died, or how many people attempted to kill me, here I am. I can survive a month with almost no food and very little water. I survived being choked until my heart stopped for a minute or two and no CPR. I have headaches every day of my life, some being worse than migraines. I can't remember the last time I went a whole day without some pain or physical issue distracting me from my life. Yet I have to learn to live with it all because I can't find help to figure it out. Most likely I've been malnourished for at least a year, if not longer. Eating 2000-2300 calories to maintain 130 lbs at a little shy of 5'7" makes not a lick of sense, especially when I don't exercise at all, move as little as possible, and have a desk job. Eating that much and still fighting to not lose weight is a sign of a lack of nutrient uptake. Yet because I'm constantly fighting my body, the doctors refuse to believe it's possible because they can't see it when looking at me.

So what did today bring? I woke up with no pain this morning. Within a minute of taking a few sips of water it was back. It seems whenever I sip liquids or have any kind of food (even fruit snacks - pure simple carbs) it 'wakes up' my intestines and that causes the pain - the more noise coming from my intestines the worse the pain gets. I can go an obscene about of time without adequate food and water, but it affects my brain very badly. Throughout the day the pain seemed a little more dull, but it's probably just the lack of glucose in my brain affecting the nerve responses. Plus now, even when laying down, I can just turn my head and blackout. That's not incredibly abnormal though - I've had issues with blacking out for around 15 years. Doctors don't believe it - when a few tried a test or two to figure out why, they couldn't find why because they refuse to pay attention to what causes the blackouts (my neck).

My cat had 3 or 4 nightmares today. It's getting out of hand. My poor little boy is just terrified. I tried petting him a couple times but not for more than a few seconds - I don't want to be bitten again. I wish I could take better care of him, but making it down the stairs in my townhome for anything and then getting back up takes at least 20 minutes (should be more like 30-60 seconds) so cleaning his litter box is hard - I'm not even going downstairs to sleep in my bed because it's too hard to get up and down. Even going to the kitchen to give him a treat is too difficult most of the time. Heck going to the bathroom 20 steps from the couch can take 10 minutes!

Still, even with all the manifestations of physical problems, going to the ER would be stupid. Last year after losing 15 lbs (from 140-125) in less than 3 weeks because of my stomach problems wasn't anything to be concerned about for them. Considering I read in a book at the patient library at Mayo that losing 5% of your body weight in a month is dangerous, losing more than 10% in about half that time should have been taken incredibly seriously. They wouldn't even consider admitting me! Even before that I went in with serious symptoms that were caused either by a doctor increasing a medication and overdosing me or a massive infection in my cheekbone (that was penicillin resistant) spreading to my brain and I was told I had tooth pain (turns out it was the overdose but the doctor would not consider the possibility). Going in there with pain that 'doesn't make sense' or is 'impossible' will get me a raised eyebrow and told to leave. Unless I'm bleeding overtly, missing a limb, or completely unconscious there's little point in requesting help from the ER.

Thank you to everyone who's shown concern and support. I wish I had a viable option in which I can reasonably expect some kind of medical help, but I honestly can't think of a single idea that has a chance of working. I have a better chance of having a spontaneous cure than I do of getting medical intervention.

  Member Comments About This Blog Post:

HDHAWK 10/30/2011 8:08AM

    If you can't keep weight on it could be an overactive thyroid. Just a thought. Keep searching. I hope you get some answers.

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NANCYLRAGS 10/30/2011 2:56AM

    Please don't give up! I wish I knew more about why you are going throug contiinuous pain. We are here for you. Hugs!!! Nancy

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NANCYLRAGS 10/30/2011 2:55AM

    Please don't give up! I wish I knew more about why you are going throug contiinuous pain. We are here for you. Hugs!!! Nancy

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DIANEDOESSMILES 10/30/2011 12:50AM

    HI Hon,, the last few peeps have "suggested" trying celiacs disease,,,going gluten free. I am just going thru this myself, and believe me I CAN EASILY RELATE TO YOU SOOO MUCHERS A ROOO !! Please look at some of my blogs,,, otheoporsis, broken foot 2 times in less than 2 yrs, surgery 13 times on foot, stenosis, diabetes, arthrisis (severely), neuropathy,,,and ALL of this was making NO SENSE to my Dr's til FINALLY 3 of my Dr's put it together,,,and BINGO they said it was the GLUTEN !!! I am just now being tested for celiacs,,,,we do not yet know if I have it or not, but we had me go OFF gluten and in the FIRST WEEK SO MANY things (the major PAIN CLEARED UP ! WOW ! I could NOT BELIEVE IT !) Also my best friend,,,SAME THING again she could NOT believe it,,,same RESULT !! I can also THINK CLEARLY NOW When I was sooo fogged up brain wise, I had felt as if my brain was often coming out of my SKULL and now I am AGAIN EJOYING studying for my stuff I do weekly ! SWOOOHOOOOO !!! My arthrisis, has WAY BACKED OFFED !!! WOW What an over all DIFFERENCE !!

Now I did NOT THINK my Dr's would TAKE ME SERIOUSLY though 2 of them had wanted me to do this. So I QUIETLY DID this ON MY OWN documenting it ALL (camera would be GR8 in ur case video) and slowly the first week,,,, my foot pain,,,,cleared UP, and I could AGAIN CLAP My HANDS ! WOOOHOOO ! By the 3rd week,, my BRAIN stopped being FOOLISH ! WOW I did NOT KNOW it could think clearly EVER AGAIN ! "

So hon,,, YES I am ENCOURAGING YOU to TRY to GO GLUTEN FREE and see how YOU FEEL !!! WOOHOOOOO I can NOT WAIT to go BACK TO IT ! I am currently BACK on wheat for 2 weeks, and my body feels like the WORSE of the WORSE while doing this for the test on the 4th,,,,,,,than AHHHHH BACK on the gluten FREE ITEMS FOR LIFE even if I am NOT celiacs, I am clearly SENSITIVE to it !! AND I WILL AVOID IT !!!

WISHING YOU THE BEST and PLEASE HIT MY EMAIL for support. I do NOT go to my page regularlly or goodies, but I DO OFTEN Emails. I know what its like to lose friends cos of being chronically ill,,,but I've also MADE A LOT OF OTHERS !! Diane,,,,,,

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PURPLESPEDCOW 10/30/2011 12:22AM

    keep searching...somewhere there is an answer. look at gluten, dairy, allergies, crone's disease, if one doctor won't take you seriously, find someone who will. Do not give up. There are many autoimmune diseases that might be causing your symptoms. Just don't give up.

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HSMOM2FOUR 10/29/2011 11:15PM

have you ever looked at Celiac Disease? My dh was dying of malnutrition due to celiac disease, but it took almost 18 yrs of trying to get a dr to do something before he was diagnosed. He nearly died of a sinus infection because his body could no longer absorb the antibiotics.
Just thinking that maybe there is a explanation that would cover most of your symptoms.
Hope this helps... and even if it doesn't help in terms of a diagnosis, know that you are cared for!!

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FITCOFFEEMOM357 10/29/2011 10:34PM

    emoticon Please you should never give up on yourself.

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ANDREWS_MOM 10/29/2011 9:53PM

    emoticon emoticon emoticon emoticon

Know that I, along with all of your other spark friends, are here for you to support you in any way we possibly can.

never give up hope

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DIZZYDOC 10/29/2011 9:43PM

    Never give up! The answer is out there. You have to keep searching. emoticon

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LIVINHEALTHY9 10/29/2011 7:50PM

    We are here for you in whatever way we can be. Even if it's just to listen.


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PUDLECRAZY 10/29/2011 5:11PM


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MOM2ACAT 10/29/2011 4:00PM


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REDSHOES2011 10/29/2011 1:42AM

    When words fail do you accept hugs?


Comment edited on: 10/29/2011 1:43:42 AM

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Continuing to get worse

Thursday, October 27, 2011

Last night I happened to see a commercial for the University of Minnesota Physicians. It said "The first thing we cure is fear." I looked on the website and it says they have a motility clinic and treat gastroparesis. So first thing this morning I called and said I really needed help and tried to give a brief explaination of the situation I'm in. They said it sounds like an emergency and I have to call 911. I explained it won't help to go to a place that knows nothing about GI conditions and last year refused to admit me after I went a month with very little food and little water. They refused to help me and insisted my only choice was to call 911.

I called Mayo again to ask them to send my records back to me. She asked me what was going on and I told her how I've been getting much worse since I've gotten back and how horrible I felt after the way I was treated. I explained I just wanted those here because if I don't make it at least someone will have my records that maybe someone else will be helped when I wasn't. I told her I was promised twice that the doctor would call me and no call ever came. She went and found the doctor and I was told she would call me this afternoon. Over 6 hours later she called me. I told her I hate how I was treated, how it seemed no one believed me even after what happened on Tuesday when trying to prepare for one of their tests, and still no one showed concern and that's why I left. She started saying there was a couple tests they could run in addition to those they were already going to do. Well, let me guess, it's going to take another 2 months before I can get those done? She said it might be just a week or two. Well, I can't make the drive back there when I can hardly walk. I'm in severe pain, I can't get food down, I can barely sip water, my insides feel like I'm being torn open and set on fire, I've now collapsed twice, I can barely walk (my legs collapse without me actually blacking out), and I have no one to drive me or help carry me. So I have no ability to even get there even if she was going to start taking me seriously.

I'm supposed to be back to work on Monday - I have absolutely no idea how I can do that. The pain keeps getting worse and it's not like I can move around. If I don't go back to work I'll probably lose my job. I'm not eligible for FMLA yet and my boss also told me I have to bring in a doctor note to prove I was actually at Mayo, even though I took vacation because she could just deny my vacation. Of course, I have no such note. If I lose my job, I lose my health insurance.

When I can't get food into me (like now) I've found that for the first couple days I'm very hungry and have to remind myself that food will only cause pain. After that I stop being hungry and the only thing I have to fight is the habit of eating. Today started the lack of hunger so I don't have to worry about that much now. Thirst is bugging me more though, and since when I drink water it causes pain I'm trying to have no more than tiny sips now and again (which is difficult because my tongue and throat have been burning since Monday). My temperature has been fluctuating based on how I'm laying or if I'm sitting/standing. It's going between mid 97s and low 99s. It seems when I lay on my back which causes the most pain that's when it spikes. Not going to help knowing that though. I've barely slept since Saturday night also. I don't know why I'm not sleeping (I'm not trying to be awake). Other problems have shown up also, but I'll spare you all of those. It's also kinda concerning that I've been showing signs of worsening malnutrition for months but no one thinks that's possible.

My cat is being incredibly affected. He's been having several nightmares a day (he starts growling and whimpering in his sleep and I can hear him across the room). I call to him and he wakes up and comes right to me and wants to lay with me. That's the ONLY time he will ever lay with me without me making him. But earlier today he came over, sat on the floor, and I was just barely petting his head (which he normally has no problem with), and he bit me! It was totally out of nowhere. That's not typical. It wasn't bad, just pressing his teeth on my hand for a second. Normally I yell at him and bop him on the nose with a finger (he hates that so I don't even have to do it hard), but today I started crying (now even my cat is saying he's done with me!) and asked him if he doesn't love me anymore. He thought about it for a minute or two then jumped up on the back of the couch to sit by my head. But I haven't touched him since. Cats can tell when a leader of the pack is sick and will show compassion, but when they sense the alpha is very sick and would 'slow down the pack' then they tend to threaten and push that animal out of the pack. It's an instinctual thing. I can't blame him for feeling like that - even indoor cats have instincts that show up.

I've lost 4 lbs between Sunday morning and this morning (2 of which were just since yesterday morning). SP is congratulating me and telling me to adjust my calorie range as I lose weight. Um, I'm about 6 lbs above being underweight right now - you'd think SP would be smarter than that.

I've been trying for a couple days to figure out if I have any options left. I'm kinda just laying here watching tv, expecting to either die or spontaneously be cured. Neither seems to be coming quickly, even while the pain is spreading and worsening. I just have no fight left and no more options (that have a favorable probability) that I can come up with. It would help if I had anyone who could stand by me and drive me around. But this is where I am.

  Member Comments About This Blog Post:

BETHGILLIGAN 10/28/2011 8:07PM

    I haven't been following your blogs very long but have jist of what you may be going through. I know you feel beaten and mistreated but you need to go to the er. You cannot lie on your couch waiting to die. You are young and there is someone who can and will help you but they will not walk in the front door to do so. You need to go out and get help. You are too young to give up your life. I am praying you will try again and seek some help. At least heading to the er will give you another start; they can get you hydrated. Please, please get to the er!!! It also may save your job and you should be able to get someone from Mayo to send email/fax to your boss. I am subscribing to your blog so I can follow how you do! emoticon

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MOM2ACAT 10/28/2011 4:39PM

    emoticon Ditto what Amy said!

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1BEARWIFE 10/28/2011 2:41PM

    You have my prayers for well being and finding the right solutions.

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GRANNYSUE9 10/28/2011 12:00PM

    Am so sorry for the things that you are going through. It sounds awful and very stressful. You can bet if a doctor was feeling like you are, they would get something done right away. Just don't give up. Believe that something good will happen and like Amy said maybe someone in your family can help you. I will keep you in my thoughts and prayers. God Bless!!


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ANDREWS_MOM 10/28/2011 9:04AM

    I continue to hold out hope for you that things will start to look brighter.
Maybe you can call the University back and not let onto how severe your issues are so they won't tell you go to the er & maybe can take on & evaluate your case?
Have you been in touch w/ your local gi or local endocronologist to let them know what happened at Mayo?
I know this all overwhelming and you have every right to be upset and frustrated. I am very very concerned for your health. Do you think going to the er would help? Maybe you would get a different dr than last time or maybe you could (if insurance allows) try a different local hospital. It sounds as if you are probably dehydrated and at least they can give you iv fluids to rehydrate you.

I know you said family ties are strained & you don't really get along too well with your family- but this is an emergency. Do you think you could call your dad? No matter how strained- you are still his daughter and you are in desperate shape and NEED help. We all to think we are strong & can handle anything ourselves (and strangely most things we can) but sometimes, just sometimes, we All need a helping hand and someone to have our backs for us- especially when we are physically so down that we can not do best for ourselves.

I really wish I was closer and able to be there physically to help you & fight for you. Don't give up on yourself. You are so worth the effort! You need to believe that. You need to believe that you are worth the fight!

Please consider contacting your local dr's (even though they haven't helped much in the past- they took an oath and they need to help you) and getting fluids before you dehyrdate. Don't let them get the best of you. You are definateley worth the fight!

Will be thinking about you and will check back in on you later.

hugs & prayers

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Sparkfriends, I'm sorry

Wednesday, October 26, 2011

I'm sorry. I feel like I've let down my sparkfriends. I've always tried to seem strong, help others as much as I can no matter how I'm feeling, and attempt to have hope. Hope is a funny thing. A year ago I read a book written by a survivor of Auschwitz about his search for the meaning of life. He pointed out that when people had hope of rescue, of finding their families, or at least of receiving something as simple as cigarettes or food they could survive incredible amounts of torture, malnutrition, and pain. Once a person lost hope they had only a few days or couple of weeks before their body failed and they died. The author believed that the meaning of life - what kept people moving forward - was to have hope for their future and for future generations.

The human body is an incredible machine. It can survive horrible pain and torture. It can survive without food or water for days to weeks, as long as the spirit has hope and the will to push forward. The brain must have nutrition and water to function properly, yet somehow hope gives the brain enough power to function at minimal levels without these biological necessities. Thus, where does the body end and the mind and spirit begin?

I've struggled for many years to find shreds of hope. What can I look forward to? What can I honestly believe is possible to happen to give me reason to believe that tomorrow, next week, or next year will somehow be better than today? What is real hope and what is false hope that will only disappoint? I knew going to Mayo had a possibility that I could be helped, but my track record with doctors led me to believe that it was better to hope for the best, plan for the worst, and expect little. That's what I attempted to do, but it didn't prepare me for the rejection and absolute disregard I'm feeling right now. The complete loss of hope I'm feeling is allowing my body to collapse around what's left of my spirit.

Many times I'm my life I've felt I couldn't survive what was happening to me. When it's physically impossible to survive something but you somehow pull through it makes you question things. I've often wondered how it was possible to survive something that you had no intention of or explanation for surviving. What force is out there to keep someone moving forward when they lack the will and hope to push through? When one has no faith, little support, and no hope of a worthwhile outcome, how can they survive? What keeps the body going when the spirit inside is lacking?

I have no idea what to do now. There are no more doctors I can turn to. I don't have the money or ability to travel long distances. I lack the strength to stand up and scream that I deserve better. I don't have people around me willing to physically support me. I lack the physical ability to continue fighting my body daily.

I'm sorry to admit that I'm weak. I've held myself up through everything, pushed through ridiculous circumstances, and denied my body it's request to break when it became physically ridiculous to expect it to continue on. My spirit has been broken many times and I've wanted to give up, but something didn't allow it. At some point there will no longer be one tiny thing holding the last thread together. No one knows when that point will come.

I blackout constantly. I often come close to fainting but I deny myself from letting that happen. I know with a lack of hope I can't fight my body much longer. A little bit ago I attempted to walk about 20 steps from the couch to the kitchen to get some gelatin fruit snacks. Usually my body will accept rice krispie treats fine, but when I had one yesterday it caused a lot of pain - that's the only thing I've eaten since the McDonalds I forced down my throat Monday night. Simple carbs can be absorbed through the mouth without the body needing to digest anything and the glucose can be delivered to the brain quickly (this is why people at risk for hypoglycemia are supposed to keep glucose tablets handy to suck on). I was hoping sucking on some fruit snacks would help me. Unfortunately I was a few steps away from the kitchen and collapsed. I can't tell you the last time I collapsed like that. My legs folded and next thing I knew I was laying on the floor. Luckily the carpeting upstairs in my house is incredibly plush so it only hurt my knees a little and my face from my glasses hitting the floor. I laid there for a few minutes before I slowly got up, grabbed the snacks, and slowly made my way back to the couch. I'm laying here slowly sucking on one at a time as I type this.

I can't force doctors to help me and I have no more fight in me to convince them I'm worth helping. I have no more plans or ideas for how to deal. I don't know what to do.

I am so sorry to let you all down. I'm sorry I'm not enough. Know that I won't do anything ridiculous or stupid, but I just have no strength left to keep fighting. I'll be here as long as I can to help support all of you because each of you really deserve to meet all of your goals and succeed in your lives. Even though I can't fight doesn't mean you shouldn't. Keep pushing forward, setting goals, then blowing those goals out of the water.

  Member Comments About This Blog Post:

MARYANNGI 10/29/2011 1:22AM

    You have let no one down, the medical community has let you down. Your blog made me realize that my problems are very small compared to yours. You are in my prayers and I am sending emoticon emoticon your way.

Stay strong.

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LIVINHEALTHY9 10/26/2011 8:44PM

    You didn't let me or anyone else down.
It's just unbelievable that you can't find a doctor who is willing to listen to you and try to find out what is going on.

Just don't give up on yourself. We care!

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TIME4CARRI 10/26/2011 7:15PM

    Your honesty is admirable. I'm sorry you feel spent but for today that is your reality. Who knows what your soaring spirit says tomorrow will be. emoticon

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ANDREWS_MOM 10/26/2011 6:59PM

    I agree! You did NOT let anyone down. I feel so bad that the dr's at supposedly a top notch facility left you down. I want to cry as I read through your last few blogs. I know the pain and torment you are going through but your issues are so much more severe than mine and are compunded by uncaring doctors who seemingly are not willing to do anything to help.
I am so so sorry for everything you are going through. I wish there was something I could do to help; I wish I could make it all go away; I wish I was there just to give you a big hug and be a shoulder for you to cry/lean on.
My heart aches for you Shari and I still have hope for you even if your hope has gone- I still have hope that some day soon the right professional will come onto the seen and make a huge difference in your world.
Sending lotsa hugs & love my friend

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MOM2ACAT 10/26/2011 2:38PM

    emoticon You didn't let anyone down! You tried so hard, and I can understand your frustration with the doctors. I still pray that there is a doctor out there somewhere that can finally understand and help.

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I've cancelled my appts - I'm leaving Mayo.

Tuesday, October 25, 2011

This blog WILL BE TMI, possibly even to the GP team. But I have proof that things are wrong with me and the doctors can't hear when I speak so I'm putting it here.

Yesterday I was in my hotel a little before 330. I was already in pain and falling apart mentally. I laid in bed watching tv until 9 when I went down the street to McDonalds. I haven't been there in about a year and a half (since all this started). If the Mayo doctors say there's nothing wrong with me, I'm going to prove to myself that I'm right! I got a 20 piece nuggets and a large fries. I pounded down 14 of the nuggets and 2/3rds of the fries (which is more food than my body has been able to handle in a LONG time) then laid in bed in absolute agony and torturous pain, praying to throw up, but knowing it would just mean more pain, so I would cry, then stop, then cry, then stop... finally dozing off about midnight. I slept fitfully until about 4 am when I woke and laid in bed for an hour and a half with my body screaming in pain. Everything hurts so bad! My throat is on fire, my stomach is popping out past my ribs (when I lay on my stomach and breathe in I can literally feel and hear a 'pop'), my abdomen is hanging forward, my head is throbbing, even my legs are cramping and going numb. Will the doctors listen to any of that? No way in hell, because none of that is statistically probable.

I'm supposed to have a test today at 330 to test the muscles in my rectum. This means I have to do an enema an hour before. Well, I'm supposed to be out of the hotel at 11. I was asking to have a late checkout at 3, but considering how horrible I feel I figured I might as well do it early to see if the enema will even work. PROBLEM! The liquid doesn't want to go in! I fought with it and got part in and holy krikies it HURT! When I got the last of it in there was tearing pain and severe burning that had me sobbing and almost crumbling to the floor. If that's just the liquid to clean me out, I can't do this test! It doesn't help that after the severe trauma I went through a few years ago, each colonoscopy has been torture (one they had to put me under deep anethesia to even do the test, the other I stopped breathing numerous times and all I remember is them shaking me and yelling at me to breathe) - I can't do a test that's going to cause this much pain where I have to be awake. I CAN'T DO IT! There is only so much physical and emotional pain a person can handle and I'VE HIT MY LIMIT! I'm not going to add to it just to be told there's nothing wrong!

Add to the fact that I've already been told several times that there's nothing wrong with me, that all my previous doctors had no idea what they were doing, since they have no actual test results from anything I can't actually have any of the diagnoses I've been given, and that the only thing that could POSSIBLY be wrong is in my head! I have learned to live with symptoms that most people are certain they're dying if they have them, but I can't keep living like this. Yet when no doctors will take me seriously, what else am I supposed to do?

My entire body hurts ridiculous bad right now. (I feel like Cas full of Leviathans.) I keep breaking into crying fits. I have gotten no hope or belief that the doctors will help me, or even listen. So I just called and cancelled all my tests. They're not listening, they've given me no hope to think they're going to help, and I can't handle the pain anymore. The person said they'd have one of the doctors call, but considering that's what they said yesterday and it hasn't happened, I highly doubt my phone will be ringing.

My hotel room is almost packed so I'm going to go pull my car up, load out, and head home. I'm going to have to decide if I'm going back to work tomorrow or not. I've not eaten yet today and I doubt I will - drinking water is hurting right now.

Coming to Mayo was a HUGE MISTAKE. This was an absolute waste of time, money, and energy. I have no intention of pursuing any further medical intervention. I will go back to dealing with everything on my own. If it means I'll end up with going back to not eating whenever I'm upset or in pain, so be it. I lived a month without food and being told that no hospital would admit me just because I couldn't swallow any food or water for weeks. I wonder how long until I end up breaking that record.

  Member Comments About This Blog Post:

ESMERM 11/5/2011 1:08PM

    I am so sorry this happened to you. I wish there was something I could do.

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MANDI99P 10/26/2011 8:47AM

    I really don't know what to say. I hate feeling helpless, and I want to help you so bad, but I don't know what I can do. Just like everyone else I thought Mayo would be the answer, and it is really upsetting to hear the way you were treated. Just please, don't make yourself sick. I know your upset right now, but please don't make it worse. There has to be a doctor somewhere that will help, please don't give up hope.


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LIVINHEALTHY9 10/25/2011 6:23PM

    So sorry. I wish I had an answer for you.



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MOM2ACAT 10/25/2011 4:09PM

    emoticon I am so sorry; I was really hoping that Mayo was really going to find some answers and help you.

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ANDREWS_MOM 10/25/2011 2:25PM

    I'm so so sorry, Shari.
I don't even know what to say as I stand here in total shock & amazement of how your trip ended up. Mayo has the reputation of being "THE" place to go when the reg dr's are at a loss and I would have never ever in a million years expected treatment like what you received. Frankly- no one deserves to be treated like that. There is obviously issues that you are having and you are sick & in pain. It is their job to try and figure out what the problems are and how to best handle/treat them.
My gp dr at Temple is amazing for gastroparesis but I really don't need to see him much at all now since I'm not having those issues right now (although i'll bet $$$ they will be back)- mine are mainly intestinal and colon problems which he has me on a new med for- but it's got some rough side effects but it's doing it's job "right now"...altho i feel sick alot on the meds...but better than w/out them.
My dr is Dr Henry Parkman at Temple University in Philadelphia, PA. I know it's a HUGE distance from where you live but maybe you canget a phone or email consult or advice? He's one of the top2 motility dr's in the country and people come from as far as Saudi arabia to see him. He's very thorough & never dismissed ANYTHING i said/never doubted me or anything even when my stomach scan came back ok after my local scan showed a 10 hr delay & was told i was one of the worst cases their practice has ever seen- so there is no "normal" & you have to expect the unexpected w/ this disease. Dr Parkman was one of the creators of the stomach pacer too.

I really feel for you & just want to cry.


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I'm desperate to leave Mayo and never return.

Monday, October 24, 2011

(No need to leave comments or anything about this. I know what everyone wants to say. I just had to say this stuff somewhere. If you read it, I'm sorry to put you through that.)

I kept putting off going to Mayo because of an overwhelming fear that I wouldn't be taken seriously, that I would be told there's nothing wrong with me, that it was all in my head, and that nothing was going to be done to help stop the torture of my body malfunctioning.

That fear has been completely justified and has come true.

Apparently I'm not worth helping. Instead I get to be told that everything I've known for the last year is wrong, that every diagnosis I've gotten is wrong, and that nothings going to be done to help me.

All I want right now is to go home and completely give up. I mean absolutely give up. If the doctors at Mayo say that it's all in my head, I will never get help anywhere. So what's the point with spending a lot more money, wasting everyone's time, and destroying any tiny piece of me that might be left that thinks I'm worth fighting for, just to be told that there's absolutely nothing wrong?!?!?!

According to the Endocrinologist here, the Endo I had been seeing has no idea what he's talking about, she has no tests to look at so there's no way that I can have any problems with my blood sugar, and there's no reason for me to see her. But she made me sit there crying while she kept telling me over and over again that I was wrong, my Endo is wrong, she has no tests, there's nothing wrong with me... I asked her 'so are there any tests you want to run or are you done with me?' I was ready to just leave, but even after asking her that 3 times she just had to punch it into my head that there isn't anything wrong with me! I just wanted to know if I could freaking leave! Finally she says she'll run a few fasting blood tests. So thank you very freaking much for spending more of my money and time when you've just said a half dozen times that there's nothing you can do for me. Of course then she also looks in the record and sees results from the gastric emptying study this morning (I'm supposed to have a 2nd part to that on Thursday) and apparently it says it was totally normal so clearly I must be lying! Apparently, I don't have Gastroparesis and the pain and problems are once again ALL IN MY HEAD.

I've been sitting in my hotel room for about an hour and a half and every piece of me says I need to just get in my car, drive home, and never see a doctor for anything ever again. A few minutes ago I called the GI office and asked if it's even worth me staying and continuing these tests when the first one came back and reversed the one diagnosis that I thought was finally going to get me answers and help, the test tomorrow I think is ridiculous because it is for something that is the absolute least of my problems, and when so far 2 of 3 doctors have made me want to quit. She said she'd ask the doctor who I thought would help me (but will not do a follow up with me) to call me. Yeah, why do I doubt that's going to happen? Or if she does, why do I think I'm going to get a serious run-around that's going to make me feel even more STUPID for trying to trust her?

I've put one helluva huge fake smile on my face all day today (well, until the Endo appt anyways) and I've tried to believe they would help me. I've told them I'm willing to do ANY test they want to put me through just to figure this out. I've tried everything I can think of to give them whatever information I can. I guess there's nothing I can do to ever convince anyone in the medical community that I'm worth helping, that I'm worth saving, that I don't deserve the torture I've been living through.

Though it's not like my family thinks I'm worth anything, so many 'friends' have given up on me, and no matter how hard I try I'll never be able to get my brain working enough to have a career worth having.

Coming to Mayo was a mistake. Now I'm thinking about going out to grab the worst, greasy, disgusting fast food I can find and eating until my stomach revolts, then eating more. I'll prove to myself over and over how horrible my body feels because I'm the only person who will help me and who will believe me.

  Member Comments About This Blog Post:

ANDREWS_MOM 10/25/2011 9:22AM

    I am sooooo sorry you are going through all of this. I NEVER thought anything like this would happen at Mayo.
When I had the same gatsric scan done at temple- my results came back good too- but fortunateley my dr didn't respond the same way the jerks you're dealing with did. He simply said it could be the meds are finally working to their full capacity or there's a slight (but not probable) chane it has gone away-which would be a great thing & he also said gastroparesis can be cyclical- where you're sick/flared for a long time, then things work normal then out of the blue Bam! it's right back to a flare & not working again. I do NOT doubt anything you are saying. I know exactly how you feel & my biggest wish & hope is that a doctor will finally take the time & listen.
On the last days of my scan (it was a 4 day scan) the test showed a delay in my colon- maybe yours will shhow something similiar to the dr's.
If you've been to other dr's, had other tests & diagnosis' I don't understand how the dr's at Mayo can say there's nothing wrong. The tests show obviously somethings wrong. I'm thinnking about you & praying that today goes better & that something happens to spark the Mayo dr's back into reality.

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MANDI99P 10/25/2011 8:35AM

    I know you don't want to hear it, but hang in there. There has to be a test somewhere that will show what is wrong. and yes, maybe what you thought was wrong isnt' the real problem, but something has to be causing your symptoms, and don't give up (or let them give up) until you figure out what the problem is. Please do not do anything to make yourself sicker. I know its frustrating and I know giving up looks good right now, but that's the easy way out, and I know that you are a hell of a lot stronger than that. I don't see you with that trench coat and wings for nothing! Just chant the motto that I do while working out, "never give up, never give in!"


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IVORY1825 10/24/2011 10:36PM

    You need a better doctor:

Comment edited on: 10/24/2011 10:37:29 PM

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LIVINHEALTHY9 10/24/2011 8:42PM

    I don't even know what to say. I am so sorry you aren't being taken seriously or getting the help you need.



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