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Title: Support for a Supporter Post by Inoscynt_Knight on Jul 24th, 2002, 12:40pm Hello Everyone. About a year ago I was in love with someone who suffered from cluster headaches. He actually introduced me to this website at the time so I would have a better understanding of his ailment before I went to pursue more with him. Unfortunately our plans were cut short and he died August 2001. According to the coroner he accidently overdosed on his medication. The problem is that he was fond of his drink, and the doctors had strongly recommended against him using alcohol. I haven't been back to this site in almost a year, but I guess I came back to find something. I'm not exactly sure what. What can I say? It's going to be a hard August. I've already found some things reading through these posts. The feelings of helplessness, that no matter how much you love someone you can't cure their problem. I was lucky enough that Charlie was willing to open up about his problem and let me know about his pain. Is everyone here living with a CH sufferer or is there anyone like me that has had their loved one die because of this disease? I've included my instant messenger names with my profile, but i will not be able to chat online for at least another month. Thanks for reading. My love to all that deal with this disease, both the clusterheads and their loved ones and friends. God bless you all for your patience and persistence. ~Inos |
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Title: Re: Support for a Supporter Post by Margi on Jul 24th, 2002, 1:40pm Hi Ino, So sorry to hear of your loss. Please feel free to stop in, anytime. I'm sure you still need answers to a lot of questions surrounding Charlie. I doubt that will ever go away. If we can help in any way, we will. Was he a regular poster here? Would we know him by any other name? This (and I'm sorry to use your tragedy as an example) should serve as a timely reminder to us all. I've often wondered about the hundreds of people who once posted here that don't anymore. Whatever happened to them? We do become like family here very quickly. But we should ALL have someone who could post on our behalf if something ever happens to us. Elaine's and John's (Sailpappy) families have been really good about that when they've faced medical crises. Not that it's really any of our business - we are just 'internet peeps' afterall - but we really DO care about everyone here. Quite often, we don't get to know folks' surnames, so we would have no way of checking in on you if you suddenly quit posting. So, ask someone you know, out there in the 'real' world, to be your messenger if, God forbid, you ever become unable to post, ok? If nothing more, we can send you and your family a boatload of prayers. And THAT never hurts!! *steps down off her soapbox* Again, Ino - I'm truly sorry to use your story as an example. Please know that we continue to be here for you, however you need us to be, ok? Hugs |
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Title: Re: Support for a Supporter Post by Svenn on Jul 24th, 2002, 1:59pm I definatly think that Margi said it all Take care my friend and remember that we are here if you need some comfort/support This is the right family you have contacted. Your friend in Norway Svenn |
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Title: Re: Support for a Supporter Post by Inoscynt_Knight on Jul 24th, 2002, 2:03pm I seriously doubt that Charlie ever posted here. He also had a hundred bazillion online alias, just like me. Considering that his work for the year before he died was very intensive, he didn't have much time to chat or post anywhere. In fact several times he had to let me go because he was swamped! The thing I find interesting as well is that he suffered from insomnia for a very long time, but I think that was mostly to avoid the headaches. He was misdiagnosed several times. In fact his dentist said his headaches were caused by an impacted molar! It was very frustrating for us to not know what was wrong. When he was finally diagnosed it was a relief, but then he realized what he was up against, and it was no easy matter. What I find so difficult about the disease is the lack of hope. It's incurable. Sure, medications help ALOT, but it never goes away. Anyway, seeing what you all go through just affirms the large amount of love I had for him because despite all of what you go through, that was the life I wanted and was willing to take on. Maybe it's a blessing that I didn't have to, but it's hard to feel alone now. He was only in his mid-twenties when he died. I think alot of my questions have been answered in regards to life, but this is another piece of the puzzle I am trying to put back together. Best Wishes |
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Title: Re: Support for a Supporter Post by Inoscynt_Knight on Aug 4th, 2002, 10:36pm Hey again everyone, Just wanted to share... I got some pictures of Charlie in the mail today that were probably taken when he was a few years younger than when I met him. His Mom sent them to me in May, but my Mom kept them while I was out of town because she didn't want me to be depressed all summer. What a waste of a perfectly good man, human being, and computer programmer. I hate you CH!!! |
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Title: Re: Support for a Supporter Post by paul_b on Aug 4th, 2002, 10:54pm Read your story. How you doing with the pieces of the puzzle. Know it takes time when the wound is deep. A year has passed and if progress hasn't happened, that's not good. What do you need if you have not found it already? |
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Title: Re: Support for a Supporter Post by Candy on Aug 5th, 2002, 7:48am How are you, Inos? I've just read through your post and the replies, and one thing keeps niggling at me...maybe what you're dealing with aren't questions, but fears. Have you ever heard the expression 'Physician, heal thyself'? Whatever it is that's laying on your heart, you have the power to take care of it. Just don't let a fear of the unknown, or anything else for that matter keep you from moving ahead. It's also possible that the first anniversary is playing havoc with your thoughts and feelings. I lost my grandmother when I was quite young, and my daughter's father passed on when she was 16. We both found that at the end of the first year, it seemed we were right back where we started. I think for some, it's like a review of what you went through then. There's enough distance to make it bearable, but it's still very fresh. As if you've allowed yourself a rest before you finish the grieving process. Are you aware that it is a process with definite stages? If not, look it up online or ask your doctor - it may reassure you that what you're going through is perfectly normal. Keep your head high, and I hope you find your peace with this. |
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Title: Re: Support for a Supporter Post by Inoscynt_Knight on Aug 6th, 2002, 9:32am Thanks for the responses. I've actually had alot of people die in my life, but I was in love with Charlie and that's a whole different ball game. I couldn't go on living life because he was my life. He was what my plans were wrapped around and he was the only person on this planet I wanted to be with everyday of the rest of my life. I lost that and with it some of my sanity. Things don't feel 'normal' and I'm not sure they ever will. Yes, I know what I'm going through is normal and that is good to know. I know the stages of grief, but there are so many questions I had to fight through, and somehow I always get stuck on one or two major ones before I push through and keep going again. Did the doctor kill him? If so, can that be prevented in the future? Can I help save someone else's life through investigation? I don't know if any of you watch ER, but Mark Green got a brain tumor and Elizabeth had to go through watching him suffer that way. I was spared the pains of taking care of a CH hubby, but that was my choice for my life! I feel that was taken away from me. I know he isn't in pain anymore, but I am still in pain. It hurts to know no matter how much I loved him and how hard I worked that I couldn't relieve him of that pain. Only death could. I guess I came here because I knew people here understood the disease. I don't have to explain to people what a CH is everytime someone asks how he died. Maybe I shouldn't vent here anymore, but the truth is I don't have many people to talk to about it. Thanks. ~Inos |
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Title: Re: Support for a Supporter Post by Margi on Aug 6th, 2002, 12:53pm OK, this is my FOURTH attempt at posting this...the board's got gremlins, I tell you!! Inos, you're more than welcome to vent all you want here. Please don't feel bad about doing that. But do keep in mind that we are NOT professionals here - we're just like you. And you have already gone through WAY more than most of us ever have, in your brief brush with cluster headaches. What you're going through is honestly something most of us have never had to deal with. I sure hope you will think about getting some professional grief counselling. They really can help you to work through your feelings right now - they're trained to do that. I know you're angry that the meds that Charlie was prescribed may have been wrong. But, know this: ANY med taken to excess has the potential to become lethal. Cluster meds are certainly no exception. I'm sure his doctor did right in giving him cluster meds. Some folks react badly to meds and there is no way a doc can know that at the get-go. Maybe Charlie's body just reacted violently. Who are we to stand in God's way when He wants to call us home? Please do stick around though, Inos - and please also feel free to tell us your real first name....? We're all friends here. Hang in there, kiddo - you're one of us now. Hugs |
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Title: Re: Support for a Supporter Post by Inoscynt_Knight on Aug 8th, 2002, 11:00pm Hello again. Do you have to know my name to be my friend? I have my reasons for not giving my name. Charlie's family might visit this sight and I do not want them to be aware of how I feel or what our plans were. Why cause them more pain or trouble by the fact I might have been their sister/daughter in law? I have had ALOT of progress since last year. When he first died, I felt that I had a lance, a wide spear, thrust into my chest and it was sticking out of me and through me constantly. I was in great physical and emotional pain. I do not feel that now. My heart's splitting has become a scar and the emptiness filled with God's love and my pursuits of self improvement and knowledge. Sometimes my heart hurts, but it is not nearly what it was. I feel alone sometimes, but it's like I said, ALOT better. I came back here because I felt led to. I can't explain it. I feel like CH is so weird. It's a hard way for someone to die. Harder to accept then something like a car accident or murder... I feel like there might be a way somehow to help someone else, or help with understanding of this disease. It was my choice to live with him, but now I can't. But maybe I can do something else. I know you aren't professionals. I have gone to professional counseling that has helped me. Do not feel you have to bear any of my grief. Mostly I am venting, maybe showing you a different side of a supporter. Thank you. |
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Title: Re: Support for a Supporter Post by Margi on Aug 9th, 2002, 9:43am Hi Sweetie, No, we sure don't need to know your name at all. We just want you to feel comfortable here. And you really ARE showing us a different side of being a cluster supporter - please keep talking. We never know how big our audience actually is. There might be someone out there who HAS gone through a loss like you have and they will draw huge comfort from your words. I really loved what you said about your heart being filled with God's love, Inos. THAT is the biggest step you can take on the road to recovery. :) So, please keep talking - you're an excellent writer and being able to express yourself like you can can be an awesome outlet. Hugs |
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Title: Re: Support for a Supporter Post by Inoscynt_Knight on Aug 11th, 2002, 9:48pm Hello again, I'm not sure I really am one of you. In fact, to be technical I am not a supporter anymore since the one I supported is gone. This is a small part of everything that has occurred, but as I said before a part that hasn't been completely resolved. When Charlie died, I wanted to do something great to honor his memory, but I have come to 2 conclusions. Firstly, I honor him by remembering the good times we had, the jokes he told, and his character in general. Secondly, by living a great life, I can honor his belief that I was able to do something great with my life. As part of that second part I want to help any way I can in finding a cure for this disease or gaining a better understanding in general. I don't believe in accidents in life and there is a reason that this illness has crossed my path. Thank you for your warmth. CHers may be all sorts of people, but I believe that their supporters are the real heros, the most patient and loving people I have met online in a long time. Thanks again... |
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Title: Re: Support for a Supporter Post by Ree on Aug 12th, 2002, 7:20pm HEY THANKS for the kind words... we truly appreciate them. We welcome you at anytime to be part of our support team... I dont think anyone should be expelled from our family because of loss of a loved one, divorce or any other reason...only by your own choice. You are an expert supporter and that is truly appreciated on this side of the fence. I am so sorry that you had to deal with the true nightmare of CH and that is to lose the one you support completely. My heart and prayers are with you. I am one of the faithful supporters here and I know that Charlie is in a better place waiting for you. You will see him again. You came here for a reason. If we brought comfort to you I am so glad... You have certainly made me proud to be a supporter. I hope to take a piece of what I learn from you too into my experience as a supporter...I hope this makes sense. My email is Ree16angel@aol.com feel free to mail me if ya need a shoulder... peace to you ~~~ree |
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Title: Re: Support for a Supporter Post by Inoscynt_Knight on Aug 19th, 2002, 11:02pm Hi again, Well tomorrow I believe is the one year anniversary of Charlie's death. I don't want to go to sleep. I can't believe it's been this long without him. Thanks for listening. |
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Title: Re: Support for a Supporter Post by Ree on Aug 20th, 2002, 2:26am the Lords peace to you and those you love... I extend my heart to you at this time I too lost a loved one in the last weeks of August... going on 10 years but the pain is still fresh... come back soon ~~Ree~~ |
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Title: Re: Support for a Supporter Post by Inoscynt_Knight on Aug 20th, 2002, 9:45pm I forgot to mention I bought a self-help book about getting through grief. It's already helped me some even though I've just read a couple of pages. I cried alot this morning. I had a dream about him last night and he invited me to come to visit him since his mother wasn't able to come. I thought it was strange, but I knew I would dream of something. |
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Title: Re: Support for a Supporter Post by Ree on Aug 22nd, 2002, 12:51am When we dream about those we love that have died it means we have accepted that they are gone and believe that they are in a better place... that is how they tell us they are fine and are waiting for us... Thankyou so much for sharing that with us it guarantees my faith that life goes on... take care and have some peace this week... Ree |
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Title: Re: Support for a Supporter Post by Inoscynt_Knight on Aug 25th, 2002, 9:38pm Sure life goes on. I think I'm going to watch City of Angels soon because I feel alot like Seth did. But I won't lie. Sometimes I want to go to sleep and not wake up. I want to be in heaven now too. I know I have to live, but I'm still not entirely sure why. The logical thing to do seems to be to commit suicide (not that I will so don't worry!) I just don't see how living and honoring their memory is the way to go and why we have to wait after finding someone we love very much. I really should write a book. there were so many revelations that came to me as I recovered from my grief and as I still recover. As I said before, I can't fully say I am happy about the fact he is no longer in pain and in a way that seems very selfish. Any ideas on how I can be more thankfully that CH no longer hunts him? Classes start tomorrow so I won't be around as much but I will try. |
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Title: Re: Support for a Supporter Post by Ree on Aug 27th, 2002, 12:36am To share those experiences in a book is a great idea... a way to make your grief work for you... instead of taking something away. I too had a loss that was deeply devistating. We're going on 10 years August 31st and it seems like yesterday...I felt that same way too... about wanting to be in Heaven where she was... but I know I am not afraid to go there now... I know she is there waiting for me... Ree |
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Title: Re: Support for a Supporter Post by Inoscynt_Knight on Sep 6th, 2002, 7:31am Too many question pop up again. I think this site has helped me as much as it can, but there are too many other things that I wish would resolve. If I'm not careful this might drive me insane. I've rethought my sharing idea. The only people that would understand would be people who had faced similar situations and therfore I woudn't want someone reading that had no clue what it feels like to have a lance through your soul. It's funny what life throws your way, but Don't worry, I'm smiling again and enjoying things. Somehow I think coming here helped wash away some of the numbness. I consider myself lucky, and though I've said it before, those of you who support day in and day out deserve more than this earth can offer. |
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Title: Re: Support for a Supporter Post by Ted on Sep 6th, 2002, 8:23am It is the Law that any difficulties that can come to you at any time, no matter what they are, must be exactly what you need most at the moment, to enable you to take the next step forward by overcoming them. The only real misfortune, the only real tragedy, comes when we suffer without learning the lesson. ~~ Emmet Fox ~~ |
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Title: Re: Support for a Supporter Post by Ree on Sep 6th, 2002, 4:09pm Printing up that one Ted... a thought to live by... My best friends mom is having a lung removed today... please send good thoughts her way if any of ya have a moment her name is Ann Marie... just like me (and Ave) Love to you all Ree |
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Title: Re: Support for a Supporter Post by Ted on Sep 7th, 2002, 9:01am Hey Ree, I didn't see this till just now so I'm sending the good thoughts now. How's your friend's mom? |
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Title: Re: Support for a Supporter Post by Ree on Sep 7th, 2002, 10:42am my friend went to see her mom in the middle of the night when she got off work and thank God she did her mother was sitting up and waiting for her... She isnt even on a respirator... If anyone can beat this... This woman can... love to you all and again thanks for your concern... love Ree oh and a little modifying here I heard from my # 1 son in Alabama he is doing great and finished with his primary training in Helicopter school with 45 hours already under his belt and 5 hours of solo... I am so happy for him. Our country is a lucky place to have men like him... (proud moment from Ree) got a wedding to go to now... love you all me |
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Title: Re: Support for a Supporter Post by Inoscynt_Knight on Nov 11th, 2002, 3:52pm Hello Everyone, I guess I wanted to let you know that I am still alive. I have been skimming posts from time to time, but really don't have much to say anymore. I still feel like I want to help sufferers and their families, but not being in the medical professor nor having funds, I don't know how I can. Perhaps I just have to wait. Anyone have ideas though? The person I supported is dead, but I can't just walk away from this disease. Still hoping for the best, ~Inos |
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Title: Re: Support for a Supporter Post by Margi on Nov 11th, 2002, 4:11pm Hi Inos, Glad you checked in - I was wondering the other day how you've been coping. It's nice to see you posting again. I hope time is making your loss a little easier. Hugs |
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Title: Re: Support for a Supporter Post by Ree on Nov 11th, 2002, 9:27pm Praying for you... ree |
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Title: Re: Support for a Supporter Post by MaureenG on Nov 14th, 2002, 11:19pm Margi: Are you talking to me? ;) Okay, I plead guilty. I'm one of those who dropped off the face of the net for a while. (As you can tell since I'm responding to a post from July.) I've had a lot of other things going on and just couldn't motivate to spend much time online, besides the fact that my ancient computer drives me crazy. I just wanted to confirm that Steve and I are still alive. I don't know why I stayed away so long. I feel better tonight just reading some of the posts by my extended family. Peace and love to you, Inos. |
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Title: Re: Support for a Supporter Post by Inoscynt_Knight on Nov 20th, 2002, 11:38am Time heals all wounds. But what no one ever told me was that your soul can be scarred just like your skin and even deeply. I will always bear the scar, but my grieving is at an end. Yes, I miss him, but there isn't much pain. I guess we all have to go somehow. And going by the hands of the Beast is probably Mercy incarnated. ~Inos |
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Title: Re: Support for a Supporter Post by cootie on Nov 20th, 2002, 12:47pm Inos ....if ya don't mind me askin what did Charlie overdose on....or did I miss that part in a previous post..sorry if so....not tryin to be nosey or bring up bad stuff....my hubby Brad got ta poppin imitrex and verapimil when he went thru his CH cycle and sort of worried me he mite be takein tooo much at once? He'd take an imitrex then do the nasal initrex within minutes.....then anuther imitrex in about 15 minuts if it didn't work....there fer a while he was havein a beer every nite before bed...yeah....that was bad bad bad !! He thought it'd help him relax...normally it does but not when he's in cycle it brings it on harder and hit rite after he fell asleep as it does only it'd hit really hard to quick it seem'd. Thanx..... |
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Title: Re: Support for a Supporter Post by Inoscynt_Knight on Jan 20th, 2003, 12:35am Hello all of my clusterheadache acquantances... I will not be posting anymore. Today is the 17th month anniversary of Charlie's death and it's time for me to move on with my life. I am not friends with his family. I did not even talk to them much before he died. So I don't know anything about his medication or why he died, but I have decided it doesn't matter now. -scratches a notch in the cluster headache demon's belt-You took away a great man you not a very nice person. Good luck to all of you who will fight against this monster as a supporter more than I had to. May God give you peace in your hearts and more PFD's then you may have been granted as of late. You have my love. Thank you for befriending me. ~Inos... Stefanie |
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Title: Re: Support for a Supporter Post by Margi on Jan 20th, 2003, 5:20pm thanks for letting us know, Stefanie. I was thinking about you just the other day, wondering how you're coping with your loss and hoping that you're working to get on with your life. Sounds like you're really taking some positive steps to accomplish that. Please know that you're always among friends here, if you ever do need us again in the future. Best of luck to you, Stefanie. |
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Title: Re: Support for a Supporter Post by Svenn on Jan 21st, 2003, 7:33am I`ll copy Margi on this one for sure Take care Ino Svenn |
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Title: Re: Support for a Supporter Post by firebrix on Jan 21st, 2003, 6:30pm Good to hear from you again Inoscynt_Knight! We IMed quite a lot a while back - I was kaos then. It's good that you have moved on and are living life to the fullest once more. Thanx for the update. We have wondered how you are many times. Good luck! Love, Peace, Health and Happiness always firebrix |
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