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| | From:  CuddlesAmI (Original Message) | Sent: 1/22/2006 3:58 AM |
O.K. dear returning friend,,, you promised an update and said it would be on type 1 board,,, so I've been checking here off and on for the last few days,,, so you don't think I forgot did you??? Just picking a tad on you,,, hope that is o.k. It has been wonderful to see you responding to so many threads here! I'm heading off to bed now,, but hope to see that update when you feel up to it! Be well and keep smiling, Cuddles  |
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Looks like the journaling board Cuddles............we are waiting.... ....JK .Had to poke some fun at someone today.   |
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LOL Cy,,, am I behind over there???? Could have sworn I had updated yesterday,,, but you know how the memory goes some days! See you there today,,, promise! Before the football games,,,,, And where is Mandy???? Hmmmmmm Keep smiling, Cuddles |
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I thought I'd get away with it... just kidding. I've actually been working on it for the past few days, and you motivated me to finish it. Here is my thoughts in action: Okay, I promised I would post this here the other day, and now that I have some spare time to type, here it is. It's really long, and I'm sorry, but it just felt good to write that chapter of my life down. I feel like I'm just turning the page to a better time in my life - physically, mentally, and spiritually. I'm not the zombie I once was, I have a life and a family that I can enjoy again. So, here goes...
For those of you who don't know me from years gone by, I'll give a history first so you understand what hell I've been through and why I've come back here again after many months of being MIA....
In January 2002, I was admitted to emergency five out of seven nights in one week, each time being doubled over in pain from just below the sternum to the far left upper quadrant. Each night they would pump me full of fluids and demerol, I'd feel better by morning and they'd send me home. X-rays, ultrasounds, CT scans, nothing showed any problems at all. After the last night of problems, my family doctor put me on some oral pain meds which helped and the problem slowly went away over the course of a few months. I chalked it up as nothing at the time, but still went to see a gastroenterologist/internist and went through all his tests to get the same "no problems found" result. THey insisted it must be IBS or an allergy and to not worry as it hadn't returned in about 8 months - to which I happily agreed and went on my way.
In November 2002, things changed. I had started to feel very bloated and nauseaus, but though it was due to my diet and skipping meals, etc. So I started making sure I had breakfast (usually one of those Carnation Instant Breakfasts) and tried to cut down on the fatty foods since that seemed to be the likely candidate. Neither helped.
Thanksgiving (in Nov here in Canada) day, we went to our next door neighbour's house for thanksgiving dinner since neither of our families had any relatives close enough to share the day with. We sat down to eat this incredible meal and were having a great time. I ate about five or six bites of food, and then it happened. It was like being stabbed in the abdomen, right below the sternum. I choked down what little I could, and tried to be polite but eventually gave into the pain and went home to lay down on the couch. My neighbour later commented "I've never seen someone look that sick before", according to him I was every shade of green and grey possible.
For the next five days I would eat, have pain, but it would resolve and I thought it would go away. By the 3rd day however, it was happening even when I wasn't eating - and I wasn't even sleeping anymore. I'd spend my night rolling around on the floor with my wife begging me to go to the hospital, but I was so sure it would go away I refused to go. We both thought I was just stressed out and if I took the time to relax it would go away. Wrong.
I remember sitting in my office one morning around 8:30am, and one of my employees (and a good friend) came in. I was sitting in my chair, trying to give him instructions for the day, when it became unbearable. I told him "I don't think I can do this anymore, something is really wrong." He said "Go to the doctor, don't worry I'll take care of everything while you're away." So, I called my wife and had her book me in at the doctor's office, who got me in to see another doctor (not my regular family doctor) later that morning.
The doc did the standard questions, the "when did this start" and so on, so I gave him the details. He told me to lie down on the table and started pressing down around my abdomed. I thought I was going to die it hurt so bad. When he got to the center of the pain, below the sternum, I yelped out in pain and told him if he did it again I would punch his lights out. He told me to sit up, and said "Well, there is definitely something amiss. I'm sending you over to the ER, just wait here a few mins and I'll be back." As I stood in his office (with my body leaning forward and my head against the wall to get some relief from the pain), I could hear him on the phone in the next office with the admitting doctor at the hospital. "I know you're booked full, but I'm going to send him over anyway." A couple seconds went by. "Look, he's heading over there now. You have to admit him, so you might as well start the paperwork now." He came back in the office with me and told me to go over there and they'd treat me from there. I drove home, told my wife what was going on, and she took me to the hospital.
The hospital did test after test, and the days dragged on. Initially it was my gall bladder, but then it was gall stones lodged in my biliary tract, then they finally figured it out after an MRI five days later. I had a raging case of pancreatitis. So the "oh you'll be here a week at most" turned into "Well, you should be out of here in two weeks." I freaked. I run my own business, and this was going to be devestating, but they left me no choice - I was staying. So, after going 10 days without eating a thing (and begging the nurses for even a glass of water), they finally let me have ice chips and very small bits of water.
For the next couple days, I progressed to glasses of water, then jello, then soup, and finally some oatmeal for breakfast. But by the time I was eating breakfast it became painfully obvious it wasn't working - I was having pain like before and it seemed to be getting even worse. Not a great feeling, I thought I was doomed at this point.
The doctor came in and told me "Go home tonight, eat and drink whatever you want, and then report back here for 7am. You won't be eating or drinking anything for the next 2-3 weeks at least." To which I replied "You're not serious, are you?" After a discussion where I begged for other options and tried everything to get out of it, he finally got it through my thick skull I didn't have a choice. I went home, ate KFC, drank a 2L bottle of Coke, ate chocolate cake and ice cream, and went nuts eating it all. And for the whole night, I laid on the floor of our livingroom in absolute agony, but I refused to go back to the hospital before 7am. Yes, I am dumb.
7am came, and they sent me to have a PICC line put in. So, the next two weeks I sat in the hospital watching movies, surfing the net, and generally being bored out of my tree. The PICC line was feeding me via fluids, so I wasn't eating anything or drinking anything. They had me on demerol the whole time, and by the end of the 3rd week it was really starting to wear out on me. I'd get a shot of it, and an hour later it'd already be worn off. Of course, they'll only give it to you every 4 hours, so that really sucked. Nothing sucks more than begging to have something for pain and not getting it, lying in agony wishing someone would just put you out of your misery.
During the 3rd week, I just couldn't get enough sleep. I'd fall asleep around 8pm, and still be asleep at noon the next day. The doctor came in one day at noon and shook my foot to wake me up because I wasn't responding to his voice at all. He asked me if I was always like that, and I told him no. He said he'd be right back, and came back with a nurse and a little kit, which you all will know well... Anyway, they checked my bg and I was at 26.9 (484). He told me it was "unusual but not unheard of" for a person with pancreatitis to suffer "temporarily" from diabetes. He assured me it would be gone when the pancreatitis was, and there was nothing to worry about.
Three weeks came and went, then four, then five, six, and finally after almost seven weeks I finally lost it. I laid in the hospital bed one night staring at the ceiling, unable to sleep, for five hours. I decided that if I wasn't asleep before 3am, I was leaving. 3am came around, and I told the nurses I was leaving and that was it. They told me I couldn't, and I responded "What, I can leave whenever I want and there is nothing you can do to stop me." They made me sign a waiver, but I left and went home. The next morning the hospital doctor called and told me I had to get right back there, and I told him I was only coming back to have the PICC line removed and then I was done. He agreed, and said it was against his judgement, but let me go anyway.
So, the next few months were really rough. I was off work for almost three months total, had lost nearly 40 lbs, and still felt like hell. The pain came and went, and I was still diabetic. I spent the first month running numbers between 1.6 (29) and 28 (504) most days, so I had no energy at all and got progressively more and more depressed. I remember driving my van home from work one day, and just wishing I could drive into oncoming traffic or the side of the overpass and end it all. Luckily my kids and wife were all I could think of, so I never did it.
I jumped from med to med, insulin to insulin, and one diagnosis to another for the next three years. I was taking Oxycontin for the pain, and it worked really well, but I had to keep going up on the dosage. I spent the past three months slowly dropping dosages, going through horrible withdrawl symptoms, and feeling miserable. I really feel for those drug addicts you see on the streets and on tv, I completely understand how they get to where they are. All you can think about is when the next dose comes so you can feel better again - for a little while. I just couldn't live like that anymore, it was killing me. I tried to stop taking it many times a week, and I could never make it more than 18 hours (a pill lasts for about 10-12) before I'd give in and have to take one. I finally saw my doctor, told her I wanted off them, and she helped me slowly get my dosage down so that I could take percocet and feel okay. I slowly lengthened the time between each pill, and three weeks ago I stopped taking them. I still have pain that tylenol won't help, but it's a tradeoff I'm willing to endure. It just feels good to not be a slave to them.
Only during the past few months have things started to change as far as a prognosis. The nausea, bloating, gas, got worse and worse, and my diabetes seemed to be under relatively decent control (HbA1c of 6.5-8.9). I was diagnosed as ADD, which helped a lot because it meant I finally got my memory and "drive" back in my life with the meds, so it was good and bad. I think it was the Strattera that motivated me to get off the Oxycontin more than anything. So some of the things that happened led to good outcomes, but overall I still felt like crap and never felt like I could enjoy life because I was always uncomfortable no matter what I did.
They kept sending me for various tests, with the latest being a "HIDA scan", where they test the gallbladder function. I got the results, and it answered almost every question. My gall bladder fills normally, but doesn't empty. A normal person's gallbladder will eject >35% of the stored bile in 30 minutes after being stimulated. Mine, was a whopping 16%. So, this whole time, all the symptoms I've gone through, the miserable existence, could be the result of a stupid little pear shaped organ I don't even need. I guess we'll find out tomorrow - I see the surgeon at 11am, so hopefully he says he wants to take it out next week!!!! I hope this explains a bit of why I've been MIA on the board. It's not that I didn't love you all - in fact I thought about you often. It just feels good to be back now - both personally and here on the board. Devin |
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Oh My goodness Devin! Of course you had me reaching for the Kleenex box,,,, it is just down right out impossible to believe you suffered through all of this pain and emotional grief and it may turn out to be all caused from your gall bladder?!!! PLEASE let us know what the surgeon says when you find out. I can relate on only one small part of your story,,, the part where you talked about looking at oncoming traffic and wanting to just end the misery. There were two or three times while I was still in Williamsburg, Va. area that driving home from rehab(cardiac) going through the tunnel,,, the thought went through my head,,, what would it feel like to hit that wall??? I hadn't even thought of that till I read your story here! Like you I quickly put the thought out of my head,,, but it was weird when I had them. Devin,,, you know we were missing you here too! I love your sense of humor and the way you put things sometimes,, just makes me laugh! Glad if the thought of us helped you at all pull yourself out of that hell you were in! Welcome Home Devin!!! I can almost sense the re-birth in you! Huge Hugs and smiles, Cuddles/Kathy PS~~You never get away with anything,,, lol,,, we care and we are nosey!!! |
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Devin You are a wonderful writer, and a talented story teller! I was on the edge of my desk chair reading every word of your post, and thoroughly attentive to your history. I'm SO happy for you that it looks like you will get relief from gall bladder surgery. It is amazing to me that these medical geniuses could not have figured this all out much sooner. Please let us in on the next chapter of your life...I'll be praying for a happy and pain free conclusion! sheryl |
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Thank-you so much for the compliments and encouragement. I think that was one of the reasons I came back here - I missed having people understand. My wife tries hard, but she doesn't understand how it actually feels or the things that go through my mind. When I say that I feel low, you all know what it feels like. I don't think I'm any type of exceptional writer, I just write down exactly the way I think. It's funny, it's almost like a conversation with myself, because I hear myself saying the words in my mind as I type them. I'm glad you find my thought patterns interesting! :-( The surgeon wants more tests before he'll do anything. So, I go for a CT scan (they haven't called yet with the date/time), and then see him after that. I told him the nausea was unbearable, but I don't think that mattered much. He said taking it out now would be a less than 50/50 chance that it would work, he just wants to have another look at my pancreas and gall bladder before doing anything. So one of my kids was puking all over this morning, and I felt bad for him because he is only 5 and doesn't understand it and gets freaked out by it. I left him and my wife and went to work in a client's office. Two hours later, I'm bowing to the porcelain throne and desperately trying to stop. I popped a million blood vessels in my face, so now my eyes are swollen and hurt like hell, my face and cheeks are covered in purple lines, I look terrible. The look my client gave me as I was leaving his office was amusing - I'm sure he thought I was going to drop dead on the floor!!! Anyway, sorry to get off on a tangent here, but it hurts to read the screen. :-( I was hoping to get a resolution to this, but it would appear my life keeps winding down this twisty road - and I don't have any Bonamine to keep me from puking out the window!!! Devin |
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| | | From: starau2 | Sent: 1/28/2006 11:30 AM |
devin, i've just read your story.....wow......(coz i see a specialist in a few weeks to discuss surgery on my gall stones... (my type 2 diabetes was discovered while they were investigating the pain i was having. ...) i hope this is finally resolved for you.....i just can't imagine going for that long living with that kind of pain...take care star* |
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Hi Star, still no booking for the CT yet.... so the waiting game continues. The stupid thing is that I've had two CTs, three MRIs, three ultrasounds, and enough x-rays that I'm sure I glow at night by now. I don't understand how doing another one is going to make a bloody bit of difference, so it's got me a little hot under the collar this week. I've been a real grouch this week, I suppose that's probably why. It's in the back of my mind, and I try to forget about it... but when you feel a stabbing pain that doubles you over or wakes you up at night, it's hard to ignore. To make matters worse, my allergies are killing me all the time because we have had such a dry and weird winter (almost no snow at all, we'd usually have 2-3 feet of the stuff around now). So how long ago were you dx'd? Did you have any symptoms of T2 at all? It's good they caught it, it'll help you live a much longer life! Devin |
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| | | From: starau2 | Sent: 2/2/2006 1:53 AM |
hi devon....i guess they have a reason for all the repeat tests etc...but i think i would be a bit peeved too..lol...hang in there... i was diagnosed in december last year....and in hindsight yes, i had a lot of symptoms...it was good, in a way, to get an explanation for what i was feeling...it just fit...anyway, now i can deal with it.... take care star* |
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| | | From: k8t | Sent: 2/13/2006 11:10 PM |
Hello I have read your post with interest, it is a touching story. i am keen to find out how you get on with the ct scan and tests, i saw a surgeon 2 weeks ago who thinks i have gallstones, am due a ct scan and endoscopy thingy, but that wont be for months yet. so reading your story has got me a bit worried as i dont like having pain and not knowing why for so long. i am a type 1 of 21 yrs so not sure if this has anything to do with the pain. will have to wait and see i suppose. best of luck and please keep us updated kate |
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wowo davin you have been though alot, i so glad to see you back my friend. snowgirl/martha |
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Well, more fun has happened since. This past week, I discovered one of the meds (strattera) was making me sicker than anything, so it might have been part of the problem all along. The tip off was when the dosage went up, I got sicker than I've felt in a long time. So, now I'm off it and recovering this weekend, hopefully I can get some work done now!
Well, my CT scan is booked for April 7th. They don't consider it an emergency (gee, 4 years of putting up with this isn't an emergency?), so I just have to wait. I don't have the $750 to have it done at a private clinic....
Sorry to be here so infrequently, but it's been a rough few months. I saw the GI specialist on Friday and he wants me to see a 2nd surgeon, so hopefully that guy will be a little more understanding of what has gone on. I mean, if my gall bladder is doing 1/3 of what is normal, then what the heck else do they need to decide to take it out? Normal is 30%-70% ejection fraction, and I'm at 13%, seems pretty clear to me. Okay, I've vented enough now....
Devin |
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So good to hear from you again Devin,, even if it isn't with the best of news!!! You have to be so very frustrated about it all,,,, everytime you are missing for a bit,, I just hold out hope that you haven't been in the hospital! When do you see the 2nd surgeon??? You know you can vent as long as you want to!!! If it helps at all to just yell it out!!! Then go for it,,, we can handle it! I will remember to keep checking this thread from now on to see how things are going for you! Don't push yourself too hard,, but glad you were able to get off that strattera! Keep fighting for what you deserve Devin! Hugs, Cuddles |
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