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| | From:  KellyOC28 (Original Message) | Sent: 10/12/2008 8:25 PM |
HELLO EVERYONE! I AM SORRY ABOUT THE CAPS, BUT IT MAKES THE TEXT EASIER TO READ. SOMEONE TOLD ME THAT WRITING IN ALL CAPS MEANS U ARE YELLING AT SOMEONE? I AM NOT YELLING AT ANYONE. I AM A 29 YEAR OLD FEMALE WITH A LONG HISTORY OF CHRONIC ILLNESS. I WAS BLESSED TO BE BORN WITH CHRONIC ILLNESS. I AM SO LUCKY! THE PAST 4 YEARS I HAVE BEEN DEALING WITH MY COLON AND BOWELS SHUTTING DOWN WHENEVER THEY FEEL IT IS NECESSARY. WORDS CAN NOT EXPLAIN HOW BAD THIS HURTS. IN THE PAST YEAR THE LONGEST I HAVE BEEN OUT OF THE HOSPITAL IS 6 WEEKS. AND UNFORTUNATELY IT IS NOT LIKE ONE OR TWO NIGHTS, IT IS LIKE 6 OR 7. I BOUGHT THIS NEW COMPUTER SO I STOP GOING CRAZY WHILE I AM IN THE HOSPITAL. I HAVE FIBRO, ASTHMA, EHLORS DANLOS, AND OF COURSE THE UNKNOWN GI PROBLEMS. I HAVE COME TO REALIZE THAT DOCTORS DO NOT LIKE TO DEAL WITH PEOPLE WHO HAVE SEVERE ILLNESSES THAT THEY CAN'T FIGURE OUT. I M SO FRUSTRATED BY THE MEDICAL COMMUNITY. EVERY TIME I GO TO THE HOSPITAL I COME HOME WITH A NEW COMBINATION OF MEDS. IT IS OUTRAGEOUS! DURING ALL OF THIS I AM HOLDING ON TO TRY TO KEEP MY JOB. I AM A LICENSED PROFESSIONAL COUNSELOR AND I COUNSEL ADOLESCENT DUAL DIAGNOSIS SEVERE CRIMINAL OFFENDERS. I WORK FOR A MAJOR HOSPITAL AND WAS TOLD IF I GET SICK ONE MORE TIME I WILL BE FIRED. I M OUT OF FMLA UNTIL 3 WEEK IN DECEMBER. I WILL USUALLY TAKE A VACATION DAY ON FRIDAY AND GO INTO THE HOSPITAL THURS NIGHT UNTIL SUNDAY NIGHT SO I CAN MAKE IT TO WORK ON MONDAY. ON TOP OF ALL OF THIS I HAVE HAD A BROKEN FOOT FOR 5 MONTHS NOW AND STILL IN A CAST. IT HAS TO STAY BROKEN UNTIL I GET FMLA DAYS TO HAVE THE SURGERY THAT IS NECESSARY TO FIX MY FOOT. AS MANY OF YOU CAN SEE I LIVE A VERY EXCITING LIFE! I BASICALLY CRAWL INTO WORK AND CRAWL HOME SO ILL. MY SUPPOSED FRIENDS HAVE ALL RUN AWAY BC THEY DON'T WANT TO DEAL WITH ME BC I AM NOT FUN ANYMORE...OR THAT IS WHAT THEY THINK. I AM BLESSED TO HAVE A SUPPORTIVE FAMILY! I M JUST TRYING TO FIGURE OUT THE REASON I AM SICK. I AM LOOKING FOR THE OTHER DOOR THAT IS SUPPOSED TO OPEN. SORRY IF THIS INTRODUCTION SOUNDS A LITTLE SARCASTIC, BUT I WAS TRYING TO MAKE FUN BC IT IS EASIER FOR ME TO DEAL WITH THAT WAY. I LOOK FOWARD TO MEETING EVERYONE. I HOPE EVERYONE IS HAVING A GOOD DAY AND NOT IN TOO MUCH PAIN!
GOD BLESS,
KELLY |
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| | | From: Mr Man | Sent: 10/12/2008 8:59 PM |
Wow,It never rains but it pours,eh. Let me be the first to welcome you to the group. You can probably tell I am Canadian,eh. Here you can vent all you want. Your story is heartrending and i can certainly identify with aspects,especially with not being able to find the source of your pain,having your friends disappear,not being able to enjoy life. You did mention that you have a supportive family Hold onto That. How ironic that you work in a hospital,you'd think you would have the inside track so to speak! How dare you have a disease that Doctors can't find the cause of and cure for what afflicts you and therefore not contribute to their egos,how's that for sarcasm?  Anyhow,That's all for now. |
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| | | From: CyndyK2 | Sent: 10/12/2008 9:23 PM |
Welcome to the family, Kelly. : ) I take it you aren't using Internet Explorer? If you have a Mac, you can't, I suppose, but if you have a PC, you can install IE as your browser and make use of the helps provided for community users, including increasing font size and changing type, etc. Then you wouldn't have to "yell" in all caps. : ) Because I have a Mac, I have to use a special program called CreaText to be able to change my font type, size and color, but it's worth it to me after ten years of having a PC; I felt crippled in plain text. LOL Anyway. You say you've had this GI problem all your life; I'm sure they've ruled out Crohn's disease by now, but I'm wondering if maybe you might have celiac disease. Have you been tested for that? It sure sounds like SOME sort of food-type allergy or sensitivity is affecting you. It can be almost impossible to rule out some of them on your own, but you can try if you're really serious about it. Remove entire food groups from your diet at a time and see if that has any effect. With something like gluten, that can be tricky so you will need to be a real label reader, but it could change your life. I wish you all the luck in the world, and I definitely hope you can get that foot fixed soon!
Cyndy
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THANK YOU MR. MAN AND CYNDY FOR THE WELCOME. I AGREE WITH YOU MR. MAN, HOW DARE I HAVE SOMETHING THEY DON'T KNOW HOW TO HELP. I DID FORGET TO ADD TO MY RESUME THAT I DO HAVE CELIAC DISEASE. YOU WERE RIGHT ON CYNDY! I DO NOT EAT GLUTEN. I PRETTY MUCH EAT ABSOLUTELY NOTHING. I DID NOT HAVE THESE GI PROBLEMS MY WHOLE LIFE. IT HAS ONLY BEEN 4 YEARS. WHEN MY GALLBLADDER DIED AND STAYED IN MY BODY FOR AN EXTENDED PERIOD OF TIME DID I START GETTING SICK. THAT IS A STORY FOR ANOTHER TIME. WHEN I GOT ILL I QUIT SMOKING CIGARETTES COLD TURKEY (THOSE POOR PEOPLE WHO HAD TO DEAL WITH ME), GAVE UP ANY ALCOHOLIC BEVERAGE, GAVE UP CAFFEINE AND MY LOVE DIET COKE (WITHDRAWAL FROM CIGS AND CAFFEINE AT THE SAME TIME CAN BE QUITE VOLATILE. I KNOW FROM EXPERIENCE), BECAME GLUTEN FREE, GAVE UP CHOCOLATE, AND DID LIGHT EXERCISES INSTEAD OF THE HEAVY WORKOUTS I WAS USE TO. PRETTY MUCH NO FUN! AND THEY STILL CAN'T FIND THE REASON. I DO HAVE A MAC AND I M TOO SICK TO FIGURE A NEW PROGRAM AT THIS POINT. MAYBE SOMEONE CAN EXPLAIN TO ME WHY ALL CAPS MEAN SOMEONE IS YELLING AT SOMEONE? I DON'T GET IT? BUT THAT IS WHAT I WAS TOLD ON ANOTHER PLACE. TALK TO EVERYONE SOON.
KELLY |
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| | | From: Dan | Sent: 10/13/2008 2:15 AM |
Hi, Kelly. Welcome to the family. I'm Dan, one of the staff. I'm sure there will be others by to say hello shortly. I have a couple of things on my mind. First, if you try the food allergy thing where you remove foods from your diet for 5 days and then add them back and see if you have any symptoms, start with wheat, then try milk, then cane sugar. If you don't get a reaction from any of those, you're probably OK. If you do, then go to the meats, beef, pork, fish, poultry, etc. The second thing I was thinking about was that you might want to think about going on long term disability. If they're going to fire you if you miss any more work, then it might be time to stop working and go on disbility. That's what I did, and it was the best thing I ever did. If you work for a hospital, I'll bet they have a long term disability program. Well, good luck and please know I'll add you to my prayers. Hugs and lots of love, Dan |
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| | | From: Hannah. | Sent: 10/13/2008 2:27 AM |
Welcome to the group Kelly. You sure have a lot on your plate. Well, at least you can talk to us from your hospital bed, and it makes a great differance when you can do that.
I'm glad you have great family support, and you will get great support from us too.
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| | | From: CyndyK2 | Sent: 10/13/2008 4:45 AM |
Dan, if she has celiac disease, wheat is deadly for her. All forms of gluten will make her deathly ill. But it sounds like that's not ALL she's got going on, if she's on a gluten-free diet and she's still having so many problems. Could be time for an extensive allergy workup; not just the simple version, but the serious one. My sister had the simple version and they handed her a list several pages long of foods she was supposedly allergic to or sensitive to, and she just about starved herself before she realized that the test wasn't sensitive enough and had another one done that showed she was only really having problems with two or three things. Once she cut those out of her diet, she was vastly improved. You might want to consider going organic for a while, see if that helps; all of the chemicals in most meats and poultry (and eggs) can be passed down to us in their food products. And Dan is right, you might steal a march on your employer by going on long term disability before they have a chance to fire you for absenteeism. Think about it seriously, Kelly.
Cyndy
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Goodness Kelly, I thought I had a lot of problems!! I have fibro too plus a lot of other good things, like asthma, GERDS, thyroid, diaabetes, high blood pressure, high cholestrol, and RLS but boy you have me beat by a long shot. Honey, keep on trying to laugh at your situation when you can. A sense of humor can get you through the hard times when nothing else works. I have a deep faith and a wonderfully supportitive family so with it all I feel very blessed. How you are juggling all you are doing makes me feel you need a gold star and a great big hug. I'm new to computer use or I would send you a neat graphic hug. Everyone here is so supportitive so post in and vent when you need to or cry and we'll cry with you. Hope you have a better year. lots of love gramanan |
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Hi Kelly, Welcome to the group. I'm Debra, aka tomcat here on the board. I'm one of the helpers around here, though I don't contribute too much lately. I've been rather busy around here but I do check in daily. I'm sorry you've got such a long list of things wrong with you. Sounds like you've really had a hard time with it all. I'm glad you're trying to keep a sense of humor about it. And that you have good family support. That's important. And don't worry, I've lost all of my friends too. That's pretty common, probably most of us have lost our friends. Kind of goes with the territory I guess. You've couldn't have found a better group of folks than the group here. Anytime you need to vent, just let loose! That's what we're here for. And be sure to check out all of the info over to the left in the pale blue column. There's a wealth of great info to be found there. And once again, welcome to the group. I look forward to getting to know you better soon. debra/aka tomcat |
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| | | From: EUCmom | Sent: 10/15/2008 3:04 PM |
Hi Kelly and welcome to the group! You have now found your new friends because yes just like we all know we have a very contagious disease and everyone we thought we had ran for the hills, lol. Debra was right when she told you to come here whenever you want to cry, vent, yell, laugh, or just the most important thing; have a conversation with people who know all too well what you are going through. I have found out that doctors hate stuff about most of us they don't understand. If it isn't negative on a test then it cannot be. That is what they are taught. I am sorry for what you are going through but we have all been there and you came to the right place for help, guidence and just plain friendship. Hope your day is a good one. Kim |
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THANK EACH AND EVERY ONE OF U FOR YOUR KIND WELCOME! I WAS BACK IN THE HOSPITAL AND TOO SICK TO USE MY LAPTOP. THAT IS WHY IT HAS TAKEN SO LONG FOR ME TO GET BACK TO YOU. I WAS BORN WITH CHRONIC ILLNESSES AND HAVE STRUGGLED MY WHOLE LIFE. MY MOM JUST TOLD ME THAT I USED TO HAVE WEIRD RASHES AND ILLNESSES WHEN I WAS AN INFANT AND TODDLER. SHE SAID THE DOCS COULDN'T FIND OUT WHY AND THEN I STOPPED HAVING THOSE SYMPTOMS. KIND OF SCARY! RIGHT NOW I AM ON TPN. I WAS NOT ABLE TO EAT SO THEY PUT ME ON THE FEEDING TUBE. I AM HAVING A DIFFICULT TIME ADJUSTING. MY STOMACH GETS VERY FULL AND BLOATED AND HURTS BAD. THE DOC SAID THIS IS NORMAL FOR THE FIRST COUPLE OF DAYS BC I WAS SO MALNOURISHED. I HOPE IT GETS BETTER SOON. RIGHT NOW I AM JUST SO EXHAUSTED! I KNOW THINGS WILL BE BETTER SOON! I HAD AN MRI ON MY BROKEN FOOT WHILE I WAS IN THE HOSPITAL BUT HAVE NOT RECEIVED THE RESULTS. I DID TAKE THAT HARD STEP AND TALK TO HR ABOUT LONG TERM DISABILITY. I WOULD NEVER EVEN LET THAT CROSS MY MIND, BUT NOW I AM JUST TOO SICK! I AM TRYING NOT TO WORRY. I THINK I M MORE SCARED THAN ANYTHING. I AM SO TIRED OF LIVING IN THE HOSPITAL :( THANKS FOR ALL THE PRAYERS AND YOU ALL WILL BE IN MY PRAYERS! HOPEFULLY I WILL BE AROUND A LITTLE MORE NOW. THANKS FOR EVERYTHING :)
GOD BLESS!
KELLY |
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Kelly, Sorry to hear that you've been in the hospital again. It sounds like it is time for you to consider long term disability. Would your doctor support you in it? I'm glad that you are considering it and looking into it. You need your strength so that you can focus on getting your nutrition and regaining your strength. Is there a reason why your foot is not healing? Five months seems like a long time for it to be in a cast or not healed. Do your bones not heal properly? I find it interesting that your mom just told you about your getting rashes when your were an infant. I wonder if that has anything to do with your current problems. Interesting. May deserve investigation. Keep us posted how you're doing. Take care and stay strong. We're here if you need support. tomcat |
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| | | From: Dan | Sent: 10/22/2008 1:26 AM |
It really sounds like you have food allergies, hon. And it sounds like you've had them all your life. Like Cyndy said, it could easily be just a couple of foods that are causing your problems. I know I am allergic to fish and beef. As long as I stay away from them, I do pretty well. If I get into either one though, I get into trouble pretty fast. I was eating lunch with some friends a few weeks ago, and the person sitting to my left ordered crab cakes. When the waiter brought them, the smell hit me and I simply couldn't breath. I got an instant headache, and couldn't catch my breath for love nor money. She noticed that and asked me what was wrong, and I told her the smell of the crab was bothering me. She moved and the symptoms cleared up immediately. Well, the headache was there for a couple of days. But I was able to breath anyway.  I hope the long term disability works out for you. Good luck. Hugs and lots of love, Dan |
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