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Title: Vigil for Dave Emond. Night 7!!!! Post by Carl_D on Aug 27th, 2004, 7:03pm Night 3 of our vigil for Dave and Annette Emond. I will be lighting 3 tonight. One for healing, one for peace, one for strength. Please everyone. Light your candle, say a prayer or blessing, send a vibe and some energy. Dave and Annette need us right now. I am asking for everyone to do this for the rest of the month of August. I will be keeping my candle lit for as long as it takes. I'm sure alot of you will be too. Remember, there is strength in numbers. Peace, Carl D *Saturday night... lets do it again **Sunday night...Again everyone - light 'em up! I even got ahold of an old church bud and asked that they put Dave on the prayer chain ***Monday night - Light every candle you have!!!!! ****Tuesday. This is the last night I have requested for the vigil. However, I will be lighting a candle every night and saying a prayer until Dave's health turns around. |
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Title: Re: Vigil for Dave Emond. Night 3 Post by vig on Aug 27th, 2004, 7:06pm Come on Dave... Fight one more round... |
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Title: Re: Vigil for Dave Emond. Night 3 Post by Becky on Aug 28th, 2004, 9:47am Candles are burning day and night here. Please Dave don't give up the fight. Hugs Bec |
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Title: Re: Vigil for Dave Emond. Night 3 Post by ave on Aug 28th, 2004, 11:17am Only just saw this. Just back. No candle, different night times...no matter. I will light the thought candle, and keep it alight. Dave and Annette have given much to this board. It's only right that we give back. |
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Title: Re: Vigil for Dave Emond. Night 4 Post by Carl_D on Aug 29th, 2004, 5:13am MAJOR BUMP!!!!!! Right now this is the only thing that matters to me. When I think of what Dave and Annette are going through, it seems very petty for me to complain about myself. I just wish I had the courage, determination and fight that Dave has. HE is my hero! Peace, Carl *P.S. - I want to thank everyone who has partaken in this vigil. When there is two or more in agreeance there is power. I believe that. |
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Title: Re: Vigil for Dave Emond. Night 5 Post by Carl_D on Aug 29th, 2004, 4:42pm Bumping to keep this near the top. Still not sleeping here. :-[ Carl |
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Title: Re: Vigil for Dave Emond. Night 5 Post by Dave_Emond on Aug 30th, 2004, 4:45am Carl & all my Family out there ... Thank you so much for your tremendous efforts to go out of your way to help us through these times. It's good to know there are as many candles out there as pills I have to take these days. The candles, thoughts, prayers and vibes do more than the medications. I've really wanted to respond so much quicker, hoping to give you all kinds of great news, but physically things are getting worse day by day. Each week I go see the docs, the less optimistic they are. I've been back and forth on whether I should post just what is going on with my health because I'm sorry it just wouldn’t be what anyone wants to hear. I'm still fighting though, but will admit I have my ups and downs. I know I can't give up like I'd like to at many times since I have so much support from Annette, my family and MY FAMILY here! All of you together are a tough bunch and just aren't going to let me quit ... tough love! A lady I barely know from a couple of run-ins while working for Habitat for Humanity over a year ago, had been sending me cards almost every other week and keeping me on her prayer list at her church (as well as so many of you are doing) stopped by our house the other day as we were selling everything off to clear out and move back to the city. We got into a conversation about what appears to my fate, aside from a complete miracle. I had pretty much gotten it into my mind that my life, from a horrid childhood to the bad years after that, to Cluster Headaches, to last winter and now to my current condition, that it was all God conditioning me for something in the future. It had to be! But ... this gal in casual conversation hit me with a brick upside my head hard enough to get another light bulb working. She was talking and listening, then in just a simple passing statement said something to the effect of, "You know it is always possible that what your life has been and is now isn't for your future, but possibly somebody else's. Your life story may not be meant to lead you to a future you think, but it might be leading to affecting one or more others lives by how you dealt with yours." Whoa! ... Click! ... hadn't really put that perspective on it. Sure, when healthy, Annette and I had always been looking for ways to help anywhere we could, but in the back of my mind, I was sure there had to be something bigger in the future, I had to have been "preparing" for that my whole life. But maybe I don't have a grand finale in my future, maybe something has already been accomplished or will be that I'll never know about, or even need to know about? I can accept that. Now some of you "old timers" already know I have certain plans should I be given a "date" or "time frame." Probably 98% of you also think I should not go through with it. But ... I'm going to anyway, I have the contacts now and this is what I want. I don't look at this at all as my "reason" for the life I had or even just because someone made a comment that fascinated me, I already made this decision long before a few days ago. (If it comes to that, I'm going to need your support ... but we'll talk about that if and when the time comes.) My main response I want to share with all of you is that I am aware of what all of you are doing for us and how much it truly means. No doctor or medication comes close to this "Virgil" you all are doing in your own styles and beliefs. Whatever style or belief that each may share it is more than I deserve, but ... I will humbly embrace and accept it and want you to know it has made both Annette and I so much stronger and our faith so much clearer that we look at it as a blessing. No matter what life throws our way, there are still many blessings along the way, and you, our dear friends, are one of the most precious. Thank you for being here and making such a difference in our lives. All of you are in our prayers as well and we love you all! God Bless! Dave |
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Title: Re: Vigil for Dave Emond. Night 5 Post by Carl_D on Aug 30th, 2004, 8:01pm Thanks for checking in Dave. NEVER give up or give in. You never know when victory might be on the horizon. Keep fighting this like you are now. I'm lighting all my candles for you and Annette again tonight. We're all pulling for you. Peace, Carl D It's night 6 everybody - light ALL of your candles tonight and tomorrow!!! |
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Title: Re: Vigil for Dave Emond. Night 6 Post by john_d on Aug 30th, 2004, 8:10pm Would someone be willing to tell me what exactly is wrong with Dave Emond? I am very interested. I'll bite Carl. Lighting a candle. |
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Title: Re: Vigil for Dave Emond. Night 6 Post by Carl_D on Aug 30th, 2004, 8:21pm I believe He was put on too high of a dose of Prednisone for too long of a tapering period and it screwed his body up. Now his system is shutting down on him. Read this post from Annette a few days ago. http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=general;action=display;num=1093391793 Thanks for joining us John D Carl |
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Title: Re: Vigil for Dave Emond. Night 6 Post by Dave_Emond on Aug 31st, 2004, 4:43am Dear Friends, Well, guess I might as well fill you all in since you are going to so much effort on my behalf. It’d probably just be best to list a chain of events that are due to as Carl said, a doctor who did everything imaginable wrong in his handling of prescribing Prednisone. Too high of dosage, too long duration, way too quick a taper, no follow ups after 3 trips back telling him of new symptoms for months after done with the Pred, ignored request for ACTH test, after ER visit that did do ACTH test, he said he couldn’t understand the results on the one returned by the lab and the other hadn’t came back yet. He promised to call the lab to see what the results were and ask where the other test was. He’d call me as soon as he found anything out. I asked for further testing, but he said I didn’t have the symptoms and he didn’t know how to do the other tests anyway. To this day he has never called and even refused to see me when I went in and demanded to talk to him a few more times. I gave up. I found 2 doctors in Denver who just heard my symptoms from their secretary and had her call me back and come in right away. One is a MD who pretty much just acts as a consultant; the other is an Endocrinologist as well as an Osteopath. They’re trying to make sense of my medical records from my old doctor as well as all the specialists who sent in recommendations that were never followed up on. They have also been the only doctors to read my daily log I kept from day one back in August of 2003. They trust that more than my doctor’s reports that are so screwed up. So, months later after the Pred finish in October, around Memorial Day things started going wrong fast. Had I not got in to see someone, I would most likely have gone too far and been dead within another 3 weeks. (I tried to hide how much pain I was constantly in during the convention, but those who know me well, and even some who don’t, knew that wasn’t the “real” me.) Apparently my immune system had never “rebooted” after the take over from the steroids in the Pred, just waiting for anything to set off a chain reaction. The most likely suspects are the stresses of my quitting smoking and Annette having to move down to Denver to work. (I’m not even allowed to try to quit smoking again right now.) So, here’s the path from there: Severe pain under my right rib area (CT scan and Ultra sound couldn’t find cause) suspect adrenal glands, but they are too small to “see,” but blood tests show they are failing. Rampant Yeast Infection, hands and feet are like dead skin with visible muscle deterioration underneath, feels like everything I touch is made of sandpaper, plus burning and itching. (Small patches scattered about in random other areas.) So far, no medications or diets have been able to stop this. Then we move on to my blood itself. Need to drink as much water as possible everyday or during blood tests the red blood cells immediately break apart during draws (that take forever) and then the blood dries up before it can be tested. Of course this means a high white blood cell count, but instead of attacking the right areas, they are attacking healthy glands, organs and muscles. This is leading to Rapid Muscle Deterioration. Muscles weaken each day, losing 3-5 lbs per week, eyesight going away extremely fast and chronic pain and fatigue. Of course ... continued ... ;) |
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Title: Re: Vigil for Dave Emond. Night 6 Post by Dave_Emond on Aug 31st, 2004, 4:49am ... Tolstoy is back ... :D A few other disorders are also appearing with further testing, but beside the failing adrenal glands, the other worst ones are: my thyroid is in critical condition and won’t work on its own. A level of 200-count for testosterone is dangerously low … my count … 73. Need to get that level up so we can check for prostrate cancer and pituitary cancer. Newest disorder possibly to be added to the list is Myasthenia Gravis, should find out more about that over the next few weeks. Should be interesting going in for another EMG during what I expect (as every year) will be about the same time my chronic CH escalates to those “inner cycles” in September that have averaged 15 attacks per day through September (again in January through March). It was just last September that while going through muscle and nerve seizures, I hit a Kip 10 on an ambulance trip and it was too much for my body and it gave out and had to be revived by a paramedic who intercepted the ambulance and got me breathing again. So, even with leaving out some other conditions, besides all the medications to just keep me alive, I’ve also been instructed to not stress or get emotional to any higher degrees, since my system is so weak, the slightest thing could be fatal. Once optimistic doctors just 2 months ago are now very worried that I’m not going to make it through this … but I can’t stress or be emotional about it or the upcoming barrage of CH attacks? That’s a tall order! Shoot, I have to be careful just writing or talking about it, how can one be expected not to worry or stress? :-/ I’d probably be better off if I was just given a time frame, as I’ve already come to terms and acceptance with this situation and am not afraid of dying … just how I go is more important than anything else. I haven’t given up, miracles are still possible and that I’ll keep in my thoughts, but can’t control the physical end (to a point). Maybe the best answer now is to quit getting tests done, might be a way to quit adding to this much of the list I’ve already mentioned. [smiley=laugh.gif] So, that’s pretty much the basics of where I’m at now. As Chevy Chase said, “gonna have so much fun I’ll be singing zippity-do-da out my not a very nice person!” ;;D We do so much appreciate what all of you are doing, it’s really what keeps giving Annette and me hope that things could turn around or at least a major help in keeping those stress levels down. Guess only time will tell now, but thanks so much for all your support, might just be the difference! :-* God Bless ya All! Dave |
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Title: Re: Vigil for Dave Emond. Night 6 Post by Peppermint on Aug 31st, 2004, 10:00am Mr. Tolstoy... its an honor to hear from you ;). I can only say... we are keeping hope alive. The lord is big, and has done miracles through the smallest of prayers. So we in my household, one big and one little, are sending them up for you. You have an attitude that I could only wish I had an ounce of, at what I have considered "tough times". Still in our thoughts and prayers, Patty & Ericka |
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Title: Re: Vigil for Dave Emond. Night 7!!!! Post by Carl_D on Aug 31st, 2004, 2:40pm Wow Dave! It is only recently I have learned that a low testosterone count can be dangerous (my last test showed a 67.) Do they have you on any testosterone steriods such as Androgel or Testim? I'm just wondering if they would help or hinder your situation. As for the rest of you guys - LIGHT EVERY CANDLE YOU HAVE tonight - the 7th night for our vigil. I will continue to light an evening candle and say a prayer until Dave is back to good health and only has the CH beast to deal with. Hang in there Dave. We're all pulling for you bigtime here. Much love, Carl |
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Title: Re: Vigil for Dave Emond. Night 7!!!! Post by Sean_C on Aug 31st, 2004, 8:19pm http://im1.shutterfly.com/procserv/47b4db35b3127ccebed62b4c02ac0000001610 |
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Title: Re: Vigil for Dave Emond. Night 7!!!! Post by Mastifflvr28 on Sep 1st, 2004, 1:02am I'm hoping for a happy miracle. :) Mast http://www.maplefallswebdesign.com/misc/smiliecandle.JPG |
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Title: Re: Vigil for Dave Emond. Night 7!!!! Post by Dave_Emond on Sep 1st, 2004, 4:30am Quote:
Before you get nervous Carl, if you haven’t already, check with your doc on what “range” you were tested under and what the “Optimal” average is for that range. There are many different ranges labs will use in virtually every type test, so check that first before you get worried. Yes, I’m taking Bioidentical testosterone lozenges (150mgTroche) that had to be specially made. You have to put these things in your mouth between the cheek and gums and let them slowly dissolve. It takes about 4 hours to dissolve. Of course they are nasty tasting, so they add a flavor … or at least they think they do! I got … Bubble Gum … trust me; it only smells like bubble gum (which was not my choice). After I get done with Bazooka Joe stuck in my mouth, I’ll be switching to a topical cream! Wish I had heard of the cream first. Double check with your doc on what range your test was done in, hopefully one that would make 67 safe, if not … do something about it right away! Take care my friend, Dave |
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Title: Re: Vigil for Dave Emond. Night 7!!!! Post by Carl_D on Sep 1st, 2004, 4:38am on 09/01/04 at 04:30:07, Dave_Emond wrote:
My doc said that the normal range was between 350 - 400, and with mine being down to 67, they are checking for what could be metabolic breakdown in the muscles, which would explain why my limbs have been getting so weak and I have been in so much pain. He took me off of the Androgel and put me on Testim, which is a higher concentrate of the Testosterone gels. I'm not sure if this is a result of the Fibromyalgia, or something all together different. He did tell me to get in to see a neuro as soon as possible, and I am still trying to find a good one that will see me sooner than 3 months from now. Peace, Carl |
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Title: Re: Vigil for Dave Emond. Night 7!!!! Post by Dave_Emond on Sep 1st, 2004, 4:49am Dang! This sure sucks eh? I'm seeing so many of us here who if CH isn't enough, are having to deal with so many other health and hardships of so many kinds. >:( :'( My prayers to all! God Bless ... Dave |
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Title: Re: Vigil for Dave Emond. Night 7!!!! Post by juvy on Sep 1st, 2004, 5:09am Hey Dave, Thanks for the explanation on what is going on. Hang in there. You know we love you and are with you through this. Don't know what else to say so *HUGE GENTLE HUGS* Love, April |
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Title: Re: Vigil for Dave Emond. Night 7!!!! Post by Jimmy_B on Sep 1st, 2004, 8:41am Dave, Not much to say...but just wanted you to know that my family is praying for you. Jim, Barbara & Jessica |
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