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Title: Long post .. but they made me promise ... Post by Dave_Emond on Jul 30th, 2004, 6:46am Hey my friends! Okay, I know I promised so many of you I'd update you on my tests results from my doctors right away. But I thought it best to hold off until we settled issues over at OUCH. I did not want my response to possibly influence anyone for sympathy reasons. I'm not looking for sympathy now either, just keeping a promise. So, here's the situation: I walk into my Doctors office and we exchange quick greetings, he then asks me if I've been feeling weakness lately. Of course I said, Yes, quite a bit." He said, That's what I would have expected." Now I've been preparing myself mentally for some time now as to how I would take whatever news came my way, all I wanted was an answer. I got it. :-/ Seems my immune system is indeed failing. This is due to the improper dosage and taper schedule of the Prednisone prescription my last doctor gave me. Too high, too long, too quick a taper and no follow up tests even after several trips back complaining of different symptoms than the "normal" side effects of the Pred. In fact, kept going back over the last 8 months and another ER trip in-between. That still wasn't enough to "warrant any symptoms that I needed further tests." At one point I was told, "to go home and just learn to live with it and see what happens." I got copies of all my medical records they had on me and went to Denver to find a new doc. Now have both an Endocrinologist and a Osteopathic Doctor testing and examining me. One doc after looking at records said, "I'd be thinking lawsuit." I was surprised to hear this from another doctor! (Course now they may never be able to determine what was wrong with me originally. Or maybe is still there.) So anyway, what does this mean as far as my suppressed immune system? First of course is a high white blood count. Next comes Rampant Yeast Infection, didn't even know men could have yeast problems before. :-[ Was told yeast was found in my stool cultures and that was a bad sign. This alone can continue to spread and destroy glands and organs. (Already my hands and feet are starting to waste away.) Tried a very high dosage of Diflucan, that was supposed to stop any yeast infection, but it didn't touch it. This is because the Pred shut down my thyroid and adrenal glands. Hormones are not reacting and are moving throughout my body destroying other hormones and eventually gland after gland. Being honest with me they said they think they may be able to stop it before it becomes fatal, but could not guarantee it. We're starting with an extremely high dosage of the strongest thyroid medication available, to try to keep it working. Also, doctors orders ... no stress. With my adrenal glands not working properly, should I find myself in an extremely stressful situation, it could instantly throw my body into shock and drop me right there as the adrenaline wouldn't kick in naturally and cause a chain reaction of shut downs of glands. Fortunately I don't stress much. Annette worries though as I tend to come across situations often that require that extra adrenaline. ... yep ... of course there's more ... what'yda expect? ;) |
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Title: Re: Long post .. but they made me promise ... Post by Mark C on Jul 30th, 2004, 6:50am Prayers and good vibes to you brother...you are a strong man....I have seen it with my own eyes.....take care of yourself and let me know if you need anything....we are family you know. Your Clusterbud, Mark |
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Title: Re: Long post .. but they made me promise ... Post by Carl_D on Jul 30th, 2004, 6:58am HOLY SHIT! I'm sorry to hear that Dave. Seems the meds they try to cure us with are only killing us quicker. Sending you all the vibes and energies I can muster up. Keep us posted. And DON'T STRESS! It will work itself out fine with OUCH. I really don't want to see you resign your position, but if it comes between your health and you, Don't sacrifice yourself. Pulling for ya bigtime, Carl D |
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Title: Re: Long post .. but they made me promise ... Post by Dave_Emond on Jul 30th, 2004, 7:02am I can't stand by, a car flips upside down and crushes the roof, I squeeze in the window, cut the hanging man down from his seat belt and drag him out. Come across another flipped convertible, as others lift, I pull the driver out, blood pouring out his ears and fighting. I wrap him in my service blanket to stop shock and have to hold him down to keep him from reopening wounds as quick as I could stop the bleeding. (Got put on report for misappropriation of government property for that ... go figure! ::)) Many ... many circumstances like these or worse, I just happen to come across. Annette knows that and is afraid for me to go anywhere now ... even WalMart! [smiley=laugh.gif] Had Ultrasound done on my abdomen yesterday, will find out Monday what shape organs are in. Some good news though ... remember all of you to who I complained that they first had me eating nothing but fruit and vegetables and I hate veggies? No more! When doctor said I could not eat these anymore, I was like Raymond when the doc ordered him to play more golf. I told my doc I'd need a note for that because Annette would never buy it! ;;D He did! Now though, I've got to take these horse pills that are vegetables and fruit with all the things that could be harmful to me now taken out. Oh well, after biting into raw Cauliflower, they don't seem so bad. So the status as of now ... oh wait ... this blew me away! My doc said to me, "Well you are a Chronic Cluster Headache sufferer, you're pain tolerance is so high, that if it wasn't ... you couldn't stand the pain. You wouldn't walk or even sit. And that you can feel this pain while between Clusters, I'd hate to think what it really would feel like to someone else." A Doctor who understood Clusters! I think I'm at the right place! 8) Okay, let's wrap this up. Status as of now is they think they may have caught it in time, but I should expect many months of pain and weakness and to be careful of depression. Still no guarantees, but have to think positive no matter how bad it gets, again, Doctors orders. Should be fun ahead ... so Mr. Happy ... I know you said, "I'm 25 words or less in person, but turn into Tolstoy at the keyboard!" Look out now, cause there ain't much more I can do these days! ;) One last note and I'll let you all go rest your eyes. If it weren't for BobW and then back up from Cat, I'd have never known about these tests that were supposed to be done. Had I not changed doc's on your advice, I probably wouldn't be here now. Thanks so much for the "head up!" (Course now others are going to beat ya with sticks for my long posts now.) ;;D Got Annette, my family and my extended family here, so life ain't all bad! That's it for now, Dave :P |
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Title: Re: Long post .. but they made me promise ... Post by Dave_Emond on Jul 30th, 2004, 7:05am Thanks guys, ain't going anywhere away from OUCH, in fact, it gives me someting to do that I enjoy ... well ... most of the time! Thanks, Dave |
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Title: Re: Long post .. but they made me promise ... Post by Jimmy_B on Jul 30th, 2004, 7:45am That's the spirit, man...keep fighting, never let em see you sweat...& you'll beat this thing. Good luck & vibes.... Jimmy |
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Title: Re: Long post .. but they made me promise ... Post by Jeepgun on Jul 30th, 2004, 8:20am Dave, my prayers and thoughts are with you. It sounds like you've found a fabulous doctor. Keep up the good fight! -Frank |
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Title: Re: Long post .. but they made me promise ... Post by ShariRae on Jul 30th, 2004, 8:23am Prayers & vibes to both you & Annette....try to stay strong.... Huggs Shari |
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Title: Re: Long post .. but they made me promise ... Post by BruceD on Jul 30th, 2004, 8:55am Dave, I'll keep you & Annette in my prayers. I showed your posts to Lisa & she has certainly seen her share of supressed immune systems in the ICU at work (transplant hospital). She also smiled at your yeast infection comment ... not that you having one is funny, but that she's heard that same thing many times before. Before you even finished the statement, she was thinking that Diflucan probably wouldn't be sufficient. There's several (really powerful) meds that are given IV to take care of these nasties, but they do require monitoring of your renal system. Yours is a tough situation to be in, but I do know one thing ... clusterheads are tougher. Again, I'm pullin' for ya' man and if you have any questions for Lisa feel free to shout. Take care BruceD |
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Title: Re: Long post .. but they made me promise ... Post by Gator on Jul 30th, 2004, 8:56am Damn man, what can I say but that I am praying for your recovery. Sorry you're having such a seriously bad time, but am glad someone pointed you in the right direction to get help. Sounds like you have a really good doc now. If a DOCTOR says you should be thinking lawsuit, then I don't know if I would argue. I am one who is very much disgusted with the litigious nature of today's society so take that for what it is worth. All my best to you from one novelist to another ;;D Mike aka Gator |
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Title: Re: Long post .. but they made me promise ... Post by Little Deb on Jul 30th, 2004, 9:11am Dave, you and Annette will be in my prayers. You listen to her now....stay away from stuff you don't need to be in...you will get your chance to save the world later. It is time to take care of you. Sounds like you have a positive attitude and that is the right attitude. You have strength, and alot of love pulling for you. You will be fine. Please read my thread on "Stuggle". Big Hugs to ya.................Little Deb |
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Title: Re: Long post .. but they made me promise ... Post by Elaine on Jul 30th, 2004, 9:27am Thanks for keeping your promise! You know you are in my prayers. Love ya |
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Title: Re: Long post .. but they made me promise ... Post by Mastifflvr28 on Jul 30th, 2004, 9:32am Unbelievable. Your attitude is so wonderful Dave. I don't know how you do it. Prayers and vibes continued from here, always!! Take care and good luck sweety :) Mast |
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Title: Re: Long post .. but they made me promise ... Post by Jayne on Jul 30th, 2004, 9:47am Dave, you are an incredible person. I am just so glad that one of your stresses is gone. Just take it easy and do everything your doc tells you too,,including suing that quack that did this to you. If you ever need anything, you just shout and you know there are so many people here, including myself that will do anything they can for you. (((((((((((((((((((((((((DAVE))))))))))))))))))) :-* :-* :-* :-* :-* :-* :-* :-* :-* :-* :-* :-* |
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Title: Re: Long post .. but they made me promise ... Post by Pinkfloyd on Jul 30th, 2004, 10:03am Thanks for the update Dave. If much of what you've been through lately wasn't stressful, you're sicker than I thought brother!! ;-) You're "fight or flight" instinct must be stuck in "analyze and remain calm" mode. Research shows that once you've contracted this heightened enlightenment, you're stuck with it. Hopefully it's contagious. All the best to you and yours and I'll be looking for improved health with each future update. PF |
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Title: Re: Long post .. but they made me promise ... Post by ozzy on Jul 30th, 2004, 10:09am Dave, Those that know me, really know that I don't *do* prayers or vibes. My prayers are all with you and Annette. You my friend have shown more character and strength than any human being I know. You take your pain and health situations the way I can only dream to be. You are to be commended and emulated. In case all of this praise is building up an ego, don't worry about it, enjoy it. If Annette is anything like Sandy, she will surely gently bring you down to earth, and gently remind you that those are the qualities she saw in you when she married you. Take care my friend and yell if you need anything. Ozzy |
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Title: Re: Long post .. but they made me promise ... Post by Turts on Jul 30th, 2004, 12:22pm Long posts arent bad if they are worthy posts. Thanks for the update Dave. All I got from it really was: vegies in a pill cool 8) Wishing you all the best. Turts |
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Title: Re: Long post .. but they made me promise ... Post by Ree on Jul 30th, 2004, 1:17pm Hey Dave~~~ Feel better brother... and ain't yeast a pain in the ass~~~literally........ we love you and are praying for you. Hopefully the damage from the pred will be reversed for you... believe sometimes thats all we need to do... love ree ps Hi Annette......... chin up! |
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Title: Re: Long post .. but they made me promise ... Post by Roxy on Jul 30th, 2004, 1:37pm Dave, Thanks for posting this. You know how much we all care. My thoughts and prayers go out to you and Annette. You are a strong man, and I know you can whip this, given time. Listen to your wife...lol....and behave. Just keep fighting and keep the positive attitude....our vibes for you won't stop. No stress.....ROTFLMAO.....keep it cool and chill. Everyone here will help you out as much as possible. Now, go get yourself a good lawyer and let him handle things....takes the stress off of you..... :). Hugs, Tracey |
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Title: Re: Long post .. but they made me promise ... Post by Svenn on Jul 30th, 2004, 2:13pm Hi Dave im in loss of words here so i choose the easy way here and just copy what Roxy said. Just dont have the words to express what i feel now Take Care Svenn |
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Title: Re: Long post .. but they made me promise ... Post by Leesa on Jul 30th, 2004, 2:26pm Dave, thanks for the update. We are all here pullin for ya so if you and Annette need anything let us know and you will have it! BTW..........LAW SUITE comes to mind..........HEHEHEHEE Give'em hell man!! Leesa ;;D |
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Title: Re: Long post .. but they made me promise ... Post by Cerberus on Jul 30th, 2004, 4:02pm damn....does no one ever get a break ? Our best to you and Annette may healing come to you both soon. Gotta hand it to ya Dave...you have more endurance than I do...I would been done and gone by now hearing all of that from my docs. The stress of having heard it would have done me in. Hopin for the best Ramon |
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Title: Re: Long post .. but they made me promise ... Post by Charlie on Jul 30th, 2004, 5:53pm Thanks Dave but sorry you have all this to deal with. As I've posted so many times: How about one friggin thing at time? >:( The important thing is too take care of first things first. We'll always be here to give you a hard time when warranted. All my thoughts and vibes. Charlie |
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Title: Re: Long post .. but they made me promise ... Post by Woobie on Jul 30th, 2004, 7:02pm DAMN Dave --- I dont know what to say! :-[ please check your PMs !!!!!! :-*tina |
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Title: Re: Long post .. but they made me promise ... Post by Jackie on Jul 30th, 2004, 7:15pm Bless your heart, Dave. You're gonna win this one......you and Annette together.... Yep...that's what I'm saying. Love to you both, Jacks 8) |
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Title: Re: Long post .. but they made me promise ... Post by Jonny on Jul 30th, 2004, 7:18pm Hang tough Dave!! ..............................jonny |
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Title: Re: Long post .. but they made me promise ... Post by Sean_C on Jul 30th, 2004, 7:31pm Vibes comin to ya Dave. Sean......... |
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Title: Re: Long post .. but they made me promise ... Post by Lori on Jul 30th, 2004, 8:50pm You have much to deal with but have such a great attitude. You are a great example and very glad to hear your sticking with OUCH as you are very professional and level headed and will bring alot to the organization I'm sure. Praying that God will bring healing..may His will be done. Blessings to you and Annette. |
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Title: Re: Long post .. but they made me promise ... Post by JDH on Jul 30th, 2004, 10:41pm Dave, You're an amazing guy to be able handle all that's been thrown at you recently and not lose it. Keep fighting the good fight and keep us updated. you're in my thoughts, Jim |
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Title: Re: Long post .. but they made me promise ... Post by nancyc on Jul 31st, 2004, 5:48pm DAVE, you are in my prayers....please keep the stress at a minimum though...with the comprimised immune system, yeast infections, etc..stress is the last thing you need, bro....so don't let the OUCH stuff get to you...know that the OUCH members are behind you and with that thought in mind...Let go, and Let God....smiles,nancyc PS Lawsuits sound good to alot of folks but they have no idea how much Stress lawsuits can bring with them either LOL. |
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Title: Re: Long post .. but they made me promise ... Post by Jimi on Jul 31st, 2004, 7:06pm Ruthie asked me a couple of days ago if I you had heard what the results of all of your tests were. I told her with all the crap going on , that I had forgotten to ask. Now I read this. All I can do is echo what others have said and for you to know that I will be praying for you as well. Take a deep breath and prepare to fight this new battle. Never give up ! |
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Title: Re: Long post .. but they made me promise ... Post by Melissa on Jul 31st, 2004, 7:20pm Dave, You know I am thinking of you all the time, and pray that everything works out for the best and only the best. I hate that you're going through this and it kills me that I can't do anything to help. Please know my thoughts are only for a positive outcome and increased health. Tell Annette I am thinking of her also, as I am sure she is wrought over everything. love, mel |
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Title: Re: Long post .. but they made me promise ... Post by Kevin_M on Jul 31st, 2004, 9:13pm Hoping the best for you from here Dave with the medication. no stress, ok.. Kevin M |
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Title: Re: Long post .. but they made me promise (Upda... Post by Annette_Emond on Aug 2nd, 2004, 11:42pm Hi it's Annette..... ,You all probably know some of this, but I'm including it anyway. First of all, I'm doing fine. I am trying to take care of me and have made some improvements to my diet and vitamin regime to try and help out in that regard. Dave is not doing so well. He recently made the decision to fire his doctor in Buena Vista, and came up to Denver where he found a wonderful doctor who is very knowledgeable in the feild of osteopathy, and specializes in endocrine disorders. He took Daves complete medical file and read every page, and also the complete log that we have kept of his syptoms since last summer.Numerous blood tests and stool cultures were ordered after our first visit. All the blood tests had to be repeated the following week, as his blood coagulated to the point of being unreadable for the most part. In addition, his red blood cells were "falling apart" . What they were able to tell right away though was that his B12 was ok, his pancreas was still ok, and that he had MASSIVE amounts of yeast in his system. The following week, after a huge dose of anti-yeast med. there was no change. He also was told that his thyroid has almost been destroyed, and that his adrenal glands are barely functioning. He was put on a HUGE dose of thryroid meds, and told to stop eating any simple carbs, and to eat very few complex carbs. He was given instructions to purchase a fruit and vegetable substitute supplement instead and to start a yeast free diet. So..... a week later he went back today. There is no change in his function tests, and he is losing weight at the rate of 3-5 pounds a week. Down to 140 pounds. He has absolutely no strength and for the most part is unable to complete a task as simple as washing dishes without taking a break for 1/2 hour or so. He went with me to the office on Saturday and dusted while I shampood carpets for some extra money. He was wiped out for the rest of Saturday and all day Sunday. The doctor told him today that he wanted him to double the thyroid, and also put him on a longer term anti-yeast med, and to contact him immediately if he gets any worse symptom wise. He is to strictly adhere to the yeast free diet for 10 days, with NO cheating. They are then going to run some further tests for Human Parvo virus, and test for Epstein-Barr (which from my understanding is a catchall meaning chronic fatigue). However, he also gave him a B12 injection, even tho his levels were good, in hopes of inducing more energy into his system. He also did some accupuncture for energy. After this next week, we will see where he's at, hopefully starting to show some sign of improvement. The doctor says underneath all this damage which he DIRECTLY attributes to improper prescibing and tapering from Prednisone in October!!! there are signs that whatever was originally wrong could still be there, and indications are that it could be MS. He says not to worry about any of that right now though, just trying to get him to a point where they might be able to find that out is going to take a very long, very slow, and very painful process. This doctor seems to be very thourough, and has promised Dave that he will not stop trying to find a solution. He listens to Dave, and respects his feelings and believes in his pain and fatigue. How could he not, it is written in huge capitals all over his poor body!. We have contacted a Siberian Rescue society in hopes of finding another home for our dog, who is very lonely being left at home in BV for long stretches of time. Someone comes in and feeds him every day, but he is too social a dog to put through this. Hopefully we can find a family for him quickly and put him out of his misery where he will have some quality of life again. We are also slowly packing up the house in BV, as I can only get down there once in a while due to the cost of gas it will take a little longer. Once we get that organized, hopefully by the end of this month, we will try to rent it out, and list it for sale at the same time. All in all, life is in turmoil, but life is still good. If I can keep Dave out of mischief and keep him from going into adrenal shock from overdoing anything, things have at least a chance of getting turned around. It is so good to finally have found at least a starting point, and hopefully some answers will come sooner than later. Keep us both in your thoughts and prayers, as that is the only thing that keeps us going sometimes. Love to all of you, Annette and Dave |
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Title: Re: Long post .. but they made me promise ... Post by Linda_Howell on Aug 2nd, 2004, 11:50pm and I continue to be amazed at him... In deepest respect, Linda |
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Title: Re: Long post .. but they made me promise ... Post by Dave_Emond on Aug 3rd, 2004, 6:44am Well ... Obviously Annette will use all tactics to keep me in line. She knows the terrible diet I have to go through for quite a while now and that "NO CHEATING" remark was just her way to threaten me while I'm alone miles away! (Cheap shot!) ::) :-* This list of foods I can eat is very ... very short, and I only like about 4 items on it. NO SUGAR! Give me a break! I mean not even honey or anything similair ...and then they say, "No stress" ... yeah right! As I chew on those delightful rice cakes, sardines and water ... I don't think it will be my fault if I go insane. First they tell me of the yeast ... I'm thinking Arnold S. is going to call me "Girly Man." Now they tell me about possible Parvo ... so now I'm a dog? Shoot, my dog will be eating better than me for quite some time and I doubt he'll be willing to exchange dishes. Today the doc said, "Okay, this is going to hurt a bit as I stick these needles in your head." I kinda chuckled and said, "Doc, grab your biggest needle over there and stab it in my temple and see if I flinch!" He realized what he had said and just smiled and said, "Oh yeah." Pretty cool doc, Medicare wouldn't have covered the accupunture, so he did it for free. Haven't noticed any difference, but at this point, why not try it? Sleep is rare, I guess I feel more like I'm on the "Nod's" and should be standing on a street corner with a grocery cart, begging for a cup of sugar. :P I'm constantly asked how I put up with all this day after day after day ... I don't know, no choice? Maybe defiance? What I can say to all who get a PF day or more, enjoy it to the fullest, don't take a minute for granted. I know I'm not alone, that there are others out there who have probably forgot as I have what PF even feels like anymore. Maybe that's what keeps us going? Oh ... blah, blah, blah ... I really shouldn't write when I'm feeling like this :-[ Anyhow, my best guess is I've already died and just haven't had the good grace to lie down anywhere! ;;D I guess what sucks the most is that now that life is handing me nothing but lemons, it could at least let me put some sugar in the lemonade! :-X Whelp ... I be ramblin' on bout nutin' jest wanna thanks ya'll for bean out chere for me and I does sure preciate it. PF to all my Family and Friends! Dave |
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Title: Re: Long post .. but they made me promise ... Post by Carl_D on Aug 3rd, 2004, 6:56am Damn Dave... Hope the new treatments work, and you start to gain back some of that weight and get yer blood cells to stop going haywire. You said it all when you said when people have said they don't know how you deal with it, you tell them, "No Choice?" Nowadays when people ask me how I deal with it I stop them and say, "Shhhhh! We're hunting Wabbits!" [smiley=laugh.gif] Seriously though, sending you some mega vibes and energies and wishing blessings on both you and Annette. Peace, Carl D |
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Title: Re: Long post .. but they made me promise ... Post by Jeepgun on Aug 3rd, 2004, 10:29am Lots of love, support, and very best wishes to you and Annette, Dave. Good thing she's keeping you in line too, you bad boy! ;;D Seriously, I hope things get turned around. Keep that defiant attitude. Mental toughness is worth more than anything else when the shit's hitting the fan. [smiley=hug.gif] |
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Title: Re: Long post .. but they made me promise ... Post by miapet on Aug 3rd, 2004, 10:40am We're sending tons of *positive light and energy* to both you and your family. *pl&e* miapet |
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Title: Re: Long post .. but they made me promise ... Post by Leesa on Aug 3rd, 2004, 3:42pm Dave and Annette, I hope and pray for you both that things make a MAJOR turn around. Know that Dave & myself are pullin for ya BIG TIME!! Keep fighting!!! Take care of each other as I know you will. BTW- Annette nice job on keepin him in line! No one better for that job then you hun!!! ;;D With love and respect to you both, Leesa [smiley=hug.gif] |
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Title: Re: Long post .. but they made me promise ... Post by Charlie on Aug 3rd, 2004, 8:04pm Rats Dave: Sounds like a delightful diet though :o Pay lots of attention and get well so you can get your revenge on all these sadistic therapists. Damn. As I always say: How about one friggin' thing at a time. Charlie |
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Title: Re: Long post .. but they made me promise ... Post by Mastifflvr28 on Aug 4th, 2004, 12:33am Dave! You eat exactly what is on your diet and maybe you will be able to rise from the dead. We'll still be here waitin for ya :) Vibes going up, to you too Annette :) Mast |
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Title: Re: Long post .. but they made me promise ... Post by Kevin_M on Aug 4th, 2004, 2:59am Dave your sense of humor is amazing. You keep those spirits up and there will be plenty of time to cheat on eating after a while. Keep fighting Dave with that tough attitude. You're a damn fighter Dave. Eat them rice cakes and keep us near. Love ya man. Kevin M |
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