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Topic: Tell us something about your SUFFERER (Read 7676 times) |
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ttlovesjrt
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Doh!
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Re: Tell us something about your SUFFERER
« Reply #150 on: Jun 10th, 2005, 10:54am » |
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My husband John is episodic and has had CH since he was 16, he is now 31. He recalls getting them back then and people telling him it was his braces or that he needed glasses when he told them that it was 'eye pain.' He gets them about every 2 to 3 years, usually in August/Sept., but this year he has started early, end of May. He did not know what they were for a while until a fellow worker on a job noticed the way he looked when he has his HA, and being a sufferer himself, was able to ask John what his symptoms were and told him about CH. So while he has never been "officially diagnosed" by a dr., we have no doubt that this is what he suffers from as they are textbook to what everyone has described.
I feel very helpless, as many of you do.  I am afraid to touch him when he is going through one as there is nothing I can do that doesn't seem annoying. If there was something, I would do it.
He is very reluctant to take drugs, which I don't blame them as it does not seem that these work for people. We've been reading a lot about the O2 therapy and are interested in that, but when we called our family dr. he said that O2 is very expensive and will not likely be covered by insurance as it is not a routine treatment for CH. Does this sound right? Where are all the people on the site getting it then? He gave me a number for a neurologist and I am getting ready to call. I just don't want to deal with pill pushers or anyone who would deam what he goes through as a "migrane" or an "allergy" or a "sinus problem." How far from the truth!
He seems to be having the worst of the cycle this week, so hopefully they're on their way out, but we would like to find something.
Thank you for all your inputs. They are very helpful. Just to know that other people understand and don't try to minimize the pain.
I would appreciate any feedback. Thanks again! 
tt
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nani
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Re: Tell us something about your SUFFERER
« Reply #151 on: Jun 11th, 2005, 10:01am » |
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Welcome, TT and thanks for being a supporter to your husband. We sufferers always appreciate good supporters. I hope you've been reading the site and getting lots of info. Look at the oxygen info link on the left. Print it and bring it to you dr. If you Google Cluster Headaches, you'll find that many sites recommend oxygen. Prescriptions are not the only way to get it. Also, look on the Medications board. You'll find info on conventional preventative and abortive meds and on alternative treatments as well. Ask questions on any of the boards...someone will come along and answer. Good luck to both of you. Keep us posted! ~nani
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estelle19
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Re: Tell us something about your SUFFERER
« Reply #152 on: Jun 20th, 2005, 7:43am » |
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nani: thanks! ... hmm unfortunately my father has no computer but I have mentioned to him this site briefly...
margi: thanks for the support also! ... yeah my father has tried oxygen and it didn't really work out for him. He's aware that too much Imitrex is not good, but there's nothing I can do to stop him-you know? Now that spring is over, things are a little better...
Also, thanks for the link to the Canadian website! I'm gonna go check it out right now =)
take care people! =)
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Belka
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Re: Tell us something about your SUFFERER
« Reply #153 on: Jun 25th, 2005, 8:49am » |
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My name is Shandra, and after finding this website in desperation on Sunday when my husband scared me to death with the worst attack I've ever seen, we believe my husband David is an episodic sufferer. My husband started getting attacks his senior year in high school and usually has 1-2 clusters a year that last about 6-8 weeks each time. He has had 3 episodes since I have been with him, but we never knew what caused them. It was 2 years since his last episode. Every doctor he has gone to has thought it was "all in his head", "stress", "sinusitis", or "migraines". I think some thought he was a drug addict, too, because he would tell him the medication prescribed didn't work ,and he wanted something else or something stronger. Nothing would ever get resolved, and by then, the episode was over. I didn't think it was migraines because I get migraines and too many things were not adding up. David was beginning to think he was crazy and that he'd never find a doctor that would figure out what was wrong, and I was beginning to think it was just stress. After reading the descriptions on this sight, it described his symptoms to a "T". We just told his family doctor on Monday to refer us to a headache specialist because we believe he has cluster headaches, so he refered us to a neurologist named Elliot Michel in Tarentum, PA. I feel like we are finally getting somewhere. He's been really depressed lately, but I think this new information has given him hope and a new outlook. At least we have some idea of what we are working with now. Hopefully, this neurologist will be able to give him something to take that will help. The anticipation of getting another headache ruins any time he doesn't have a cluster headache when he's in his cycle. It's been 23 days so far, and he has to wait another 2 weeks before seeing the neurologist. The bad part is I think he is peaking right now. This board has been a God-send. David is currently having an attack right now, and he usually wants to be left alone. I think he gets embarrassed when he's in this state. He screams and hits things and thrashes around, and he doesn't want our 2 1/2 year old daughter to see him like that. Generally, I don't think he likes me to see it either. This board has quickly turned into my outlet. It's my way of coping. I worry about him and I get scared. I know there is nothing I can do, and that is the most frustrating part. It is hard to watch someone you love go through this. It's nice to know I'm not alone.
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nani
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Re: Tell us something about your SUFFERER
« Reply #154 on: Jun 25th, 2005, 1:06pm » |
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Hi Shandra, welcome. Sorry you had to find us.
Thank you for being a supporter to your husband. We sufferers really appreciate our supporters. 
You'll find a lot of info and support here. While you're waiting for his appointment, I suggest you read, read, and read some more. Have David keep a headache diary. Include info such as time of day, intensity, duration, and possible triggers. Read the oxygen info link on the left. Oxygen has been very helpful to many of us.
I'm one of those people that needs to be left alone when I'm getting hit. It's nothing personal, just my way of coping. I'm sure David's suffering has had a huge impact on all of you. It's the nature of this beast. A good suggestion I've heard for little ones is to have a special box of toys or activities that come out only during hits. It gives the child something else to focus on. I am raising my grandkids and the 9 year old copes by drawing pictures of it.
Be sure to find a way to take care of yourself through all of this. You deserve to pamper yourself now and then, so be sure to find a way to do so.
Have David come here and learn. We're pretty good supporters, too. This place literally saved a few of our lives. I've put some links here, for both of you to look at. Take care and keep us posted, OK? Sending pain free wishes to your house, nani
Medications:
http://www.brightok.net/~mnjday/chtherapy.pdf
A great online resource written by one of our members, Floridian:
http://med-owl.com/clusterheadaches/tiki-index.php?page=HomePage&PHP SESSID=a125ff345b0f1e7667a44b971494f6b8
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fat___pam
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Re: Tell us something about your SUFFERER
« Reply #155 on: Jun 29th, 2005, 7:12pm » |
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Hi, my name is Crystal and I am a supporter to my bf Dave(mr_fixit, incase he does post someday). He is 39 and is an episodic sufferer (once went 4 years with no HA!). Dave has 3 daughters, 15,15 and 17. The twins live with us. We have lived together about a year and a half. The first 13 months were a breeze! A few heaches a week, they would peek, a few pain free days here and there, and then June happened. I knew that he had HAs when we first met and they had been very light until recently (if clusters can be light, maybe he has had shadows all along??) Last three weeks they have been getting a lot worse. He had an 8 today and even threw up, which he hasn't done since we have been together. A 7 last night and scattered 4-5s each day, all at the same time of day each day but different levels of pain. (He isn't complaining one bit either, he knows it can be a LOT worse) He has previously tried a host of drugs and O2 as well. Nothing has worked up to this point. We have 2 neurology appointments within the next few months, I might make a post on that, long story. I am a school teacher so I am off for the summer and I have a LOT of spare time while Dave is at work and while he is fighting it out on our bed. I take care of "research and scheduling" he takes care of relaxing and trying not to scare me too badly. This site has been wonderful I have been reading for hours a day the past few days. He is taking Kudzu right now, it doesn't seem to be helping yet, but we aren't giving up.. its been 5 days. He is ready to try any alternative at this point. I think we will ask the neuro primarily about imatrex injections and verapimil. I might even beg him to try 02 again because so many people get relief from it. Right now we are both scared, August is the worst time of year. He calculated that he has 100 more headaches before he gets to go to the neuro. (oh, add to his responsibilities CALCULATING). He borrowed a pda to track the headaches, and good news only one bad one today, skipped the ride home HA for some reason.. lets hope the 7:30 gets lost on its way. Thanks for all of the fabulous info. There are so many touching and wonderful supporters and sufferers on here. I can't count how many times I have cried reading their/your stories. One more thing.. Dave is a smart beautiful man and I love him like crazy.
Thanks
C
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fat___pam
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Re: Tell us something about your SUFFERER
« Reply #156 on: Jun 29th, 2005, 7:30pm » |
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Frank, I just went and read your post.. YOU MADE ME CRY. Thats ok though.. we all need to cry now and then. Dave tells me not to worry, its ok, ect ect ect.. I don't think I could stop worrying if I tried. I recently went to the dentist, I have TMJ from worrying/being stressed. Not over the HA until recently, cause of teenaged kids, but anyhow.. I mentioned to the Dentist that bf had CH and that brought on a few rough nights for me recently and he actually said to me.. "DON"T WORRY ABOUT IT... THEY CAN'T KILL HIM." I was so shocked that he knew what they were I couldn't even slap him. What I wanted to say was something to the effect of "why don't you let me bang you in the head with a hammer 4 times a day... I promise, I won't kill you."
C
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Belka
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Re: Tell us something about your SUFFERER
« Reply #157 on: Jul 1st, 2005, 8:22am » |
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Hi Nani,
Well, David seems to be on the downswing right now. He didn't have any HAs yesterday. (Of course, now that he has an appointment with the neurologist, his cycle will end. But that's ok!) Even if his cycle is ending, he is going to talk to the neurologist anyway. He has been keeping a log. I have to keep reminding him, but he's getting better. It also gives me something to look at because he's more honest about the intensity of the pain when he writes it in the log, as opposed to when I ask him how bad it was. He thinks he needs to be strong for me and doesn't want to scare me. Thanks for the information. I'll keep you updated!
Shandra
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Erin
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Re: Tell us something about your SUFFERER
« Reply #158 on: Jul 13th, 2005, 8:17am » |
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I just have to say... I'm not a supporter (though I would be, if I needed to be)... I'm a sufferer, had clusters from the age of 20 until the age of 39, they came in cycles of 2-3 months followed by 1 to 3 years of remission for 18 years, then one brilliant doctor prescribed a beta blocker (propranolol, I believe it was) when I had just gone into a cycle... I had one or two more mild attacks in the first few days after I started the med, and then the cycle ended as abruptly as it started, much sooner than it normally would have, and I never had another attack after that... until 3 weeks ago.  I had truly thought it was over forever, and to start having them again after so many years of no pain is like... a nightmare.
Anyway, I'm posting on this thread not to talk about me or my clusters but to say that after reading only the first few messages in this thread, I am in tears... it's funny, reading the messages from sufferers makes me nod my head and want to say "me too" but reading these messages from supporters fills me with overwhelming emotions of sadness and love for those who have suffered with us - I can only try to imagine what it's like for people on the other side of our "wall of pain" (as I call it - this pain is a great isolator) and I think anyone who stands by someone who suffers from CH has earned the title of ANGEL. God bless you all.
Erin
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maryc
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Re: Tell us something about your SUFFERER
« Reply #159 on: Jul 29th, 2005, 9:35pm » |
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You all know Maffumatt, well if you think he is a pain on this message board you should try liveing with him. Ah he is not that bad. He has his moments. I get a little jealous of the computer sometimes, he spends an awful lot of time on it. Anyone else have this problem? He says it helps helps him concentrate on something when his head hurts. I have read alot of the letters here and see that you people have some of the same probles as we do. On top of the everyday stuff his headaches just add to everything else we have to go through.
Mary
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kayarr
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Re: Tell us something about your SUFFERER
« Reply #160 on: Sep 9th, 2005, 11:40am » |
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Greetings,
My name is Kimberly and my husband's name is Jeff. He had already had CH for at least 7 years when I met him.
I remember our first date and I know now he had to have taken Imitrex bacause he didn't have to get up and "fix" his head. (Imitrex for him will give him 4 hours but the rebound is more nasty so he saves it for when he has to interview or wants to take me to a movie
We have been married for almost two years. I have never known him without CH. He is chronic. (translation: of course he has that 2:00pm headache his "safe time" is inbetween 7:30am and 10:00 am mostly...but there is no way to tell when it will hit next.)
He gets about three days off a year. We kinda look at each other and think at the end of the day....hey, the oxygen tank has not moved!!!!!!
My guy, being a reforming control freak, has decided for himself that to dwell on this thing would consume him.
He was blessed in that his first Dr. knew what it was, diagnosed it correctly and knew about oxygen. The nuero put him on verapamil and depokote right away. Up until this year he had no idea how much the verapamil helped since when he had a heart attack we had to stop it. It didn't play well with his other meds. (since not taking that it has been the worst headache year in a long time)
I have nothing but admiration for the man. He hurts terribly but maintains that love for life and a sense of humor that drew me to him in the first place. (Yes, he can have crabby moments but who doesn't) Because of his ability to cope he makes my job as supporter really easy. All I really have to do is Love him with everything I have in me to give. Simple! Oh, and pick up the slack when necessary.
*footnote*
His yearly KIP numbers seem to be in the 5-6 range. We just entered the fall headaches season (makes sense it corralates with hurricane season) and the 8 and above are here
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eisgirle
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Re: Tell us something about your SUFFERER
« Reply #161 on: Sep 12th, 2005, 9:29pm » |
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I found this website and I think it is great. My fiance-soon to be husband in Sept. of 2006-Frank, suffers from CH. We thought we were doing really good because he hasn't had any since 2003 but boy were we wrong. He has had one now for 1 week and 3 days and there doesn't seem to be an end in sight. It pains me to see him when these bouts start in the wee hours of the morning. He faithfully gives himself his shots of imitrex and takes his prednisone and now they have him on epival also. Will this pain ever stop for him?  What causes these bouts? All he is told is he has an imbalance in his brain. The toll that it takes on myself and our daughters is horrible and he thinks he is a loser because he is missing work and can't do much because he is in a constant "stoned" stage. Thank you very much for making a website for sufferers and supporters. We have learned lots of helpful info and will keep checking back. -Dawn
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| « Last Edit: Sep 13th, 2005, 10:31pm by eisgirle » |
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Heather75
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Re: Tell us something about your SUFFERER
« Reply #162 on: Oct 23rd, 2005, 11:37pm » |
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Hello to all that are here! And thanks to everyone who deals with all of us/CHs.
CH.com is a tough place to be, but I don't know what my sufferer or I would do without it.
I've been a CH chronic supporter for almost 3 years now.
The headaches were a gradual progression. They started out with nasty HAs (now we call them "the mini HAs" ) that were originally alleviated by cold/sinus pills and a couple of antibiotic spells kept them at bay. Those went on for almost 2 years (not part of the CH sentence).
Then one night the first CH happened. I was so scared it was a brain tumor or something deadly, but he didn't want to go to the ER. Luckily it passed and we thought everything would be okay (Little did I know that would become our future ).
Several months later, the CH became regular. We were still pretty stinking scared of what it could be.
Rex found this site and said, "I think I know what it is. I think it's a cluster headache."
Honestly, I was so scared, I still thought it was something deadly.
Soon after, we got him signed up with an HMO, went in pretending not to know what was going on (y'know the whole pre-existing condition thing) and luckily the doctor picked up on the CH right away. A blessing for sure! I know there are so many out there that spend years and decades finding out what "the beast" is...
Once we got him the health insurance, he went through a bunch of tests (to make sure there wasn't something fatal in there), then meds, and they never really did much good. Between the side effects and not eliminating the CH, it felt like we were getting nowhere really fast.
After a very scary incidence with his second time on Prednisone trying to break the CH, he swore off all meds and started doing the clusterbusters treatment, along with O2. Honestly, I'm glad to see him back.
It's definitely helped him. Although the HAs are not gone, life is more manageable now for the both of us. I know when he was on the meds, he was half of the person I had married. It was getting really depressing for the both of us. Not only was he in pain, but he couldn't think or be "who he is". At least now, he's back to being more of himself: crazy, goofy, joking, caring, and creative, but that's who I married.
He hasn't been cured, and I keep trying to find something that will "do the trick" but, like anyone else who is reading this, no one has found it yet.
I have decided that anyone dealing with this should be called a hero. Waking up every day, knowing that it's going to happen again, dealing with this pain, whether your a sufferrer or supporter, is a hero in my books.
Wishing to beat the beast for all,
Heather
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| « Last Edit: Oct 23rd, 2005, 11:48pm by Heather75 » |
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ClstrHeadSupport
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Re: Tell us something about your SUFFERER
« Reply #163 on: Oct 24th, 2005, 9:37am » |
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Something about my sufferer...
Simply put he's the most kind, loving, genuine person I have ever met. Which is why I'm completely baffeled as to why this pain would be given to him. Sometimes I get so frusterated thinking about the irony of this world. There are teenagers who get pregnant and throw the babies in garbage cans, yet there are women out there who are good people, women who would be GREAT mothers, and are unable to have children. I work my butt off and at times can barely make the bills, yet I know losers, who refuse to work, milk the system and live in decent homes, spend more time with their children then I can and can afford to go on trips to Disneyland. Sometimes life just makes no sense to me. But I guess that will never change.
My husband and I have been together for four years this coming November. (Just married April 30th 2005)Our story is a long one, and it would take as long to explain it all for anyone reading this to truely understand how much we mean to eachother. So to make it short and sweet he is my knight and shinning armor. My best friend, soul mate, true love...whatever you want to call it.
My husband is 26, he's been diagnosed with Cluster Headaches since he was about 18. His first memory of having one was when he was 15. He's episodic. Currently just ended a cycle. It wasn't pretty. Probably one of the worst cycles yet. They actually went away for quite sometime, now they're back. And they were worse then ever.
I found this site during his last cycle. The only relief my husband had ever had from these monsters was with Stadol NS. Which never got rid of a headache, only "took the edge off" as he puts it. Hes been to more doctors/Neuro's then I have hairs on my head. We have been to recommended doctors, highly "esteemed" doctors, all of which seem to be semi smart but none of which who actually care. At the days end it's a pain they can't feel, that someone they don't really know is having. Someone they don't love, someone they haven't had to stand by and watch in total pain...knowing there was nothing they could do. This site was a God send. I was able to take the advice of sufferers here and what medications worked for them and take that to his Neuro. (Tell me why a doctor who's getting paid an amount I've only dreamed of, has to be told what kind of medications to give his patient, by a 22 year old with only a high school diploma?) I know Cluster Headaches aren't a big time known condition but come on now! Getting paid that amount I think I could afford to do a little research. The medications I found on this site worked wonders for my husband. It was here I found the almighty Imitrex. Along with Verapamil. The combination worked wonders. His clusters were the most under control they have ever been in his entire life. Unfortunately as is the nature of this beast, it found it's way around what once worked so well. But I told him, it was here I was able to find the answers once, and I will be on here daily to find help for him again.
Thanks for listening and feel free to contact me anytime! I love you all!!
Just incase anyone's interested my personal site is http://www.myspace.com/sarasbluewings.
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Sara Pope
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givin2fly
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Re: Tell us something about your SUFFERER
« Reply #164 on: Nov 24th, 2005, 5:01am » |
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Well. This is my first post, so "hello"
Been here reading for a long time, but never really had anything to say, but I figure.. I'm a supporter so here goes:
Dean and I have been together 14 years. We were best freinds long before we got involved romance-wise, but after living together forever we finally married 5 years ago. We have a 3 year old daughter. His attacks began about 5 years ago and like most of the previous posts, the Dr.s thought it was a sinus infection, eyestrain, etc..
It took a good GP to finally transfer us to a Nero, and when that Nero figured out he was out of his leage, he sent us up to UCSF. We see the CH legend Dr. Neil Raskin at UCSF in San Francisco, CA. Yes, the rumors are true, he is a bit of an a**hole, but he knows his stuff - just dont question him unles you have hard research behind your query. I did once and I cried on the way out of the hospital due to his tirade. We are trying a diffrent drug "cocktail" about every three weeks now, trying to find a solution - but nothing has worked yet.
Dean is a chronic sufferer and his attacks are daily. He's had them for about 5 years now and as per the Nero, he's as bad as it gets. Nothing has worked, and we have tried almost everything mentioned here. The only thing that showed any hope was Verapimil, but the Dr.s took him off after he landed in the hospital from cellulitus due to the side effects. The Dr. is beginning to recommend the brain surgery for Dean, but Dean is still hestiant and since the surgery has risks of it' s own the Dr. isnt pushing. yet.
His only management tools are painkillers. He takes Vicoden, NorCo, and Aptiq suckers (a break-through cancer pain drug) as well as a trip to the ER for a Morophine shot once a week on average. The pain, sleepless nights and grumpiness is what we cope with daily - and the personality changes are dramatic. It's awful. The Dean I married is a sweet, darling husband and father - and I still get to see the "real" Dean about once a week - other wise I live with a couple of the seven dwarfs (my personal joke): Dopey, grumpy, or sleepy (painkillers). Life is hell, but I'm holding on waiting for the magic prescription to take us from this nightmare.
Cynthia
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E-Double
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Re: Tell us something about your SUFFERER
« Reply #165 on: Nov 24th, 2005, 10:31am » |
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I just want to thank you all once again for standing by us.
You are all loved so very much and greatly appreciated.
Eric
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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zanychef
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Re: Tell us something about your SUFFERER
« Reply #166 on: Nov 26th, 2005, 3:41am » |
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i'll ditto that eric 
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plenty of time to sleep now me headaches aint too bad
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Dan_The_Man_Howell
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Re: Tell us something about your SUFFERER
« Reply #167 on: Nov 26th, 2005, 3:26pm » |
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Howdy,
My name is Daniel Howell. Son of Linda Howell or welch or whatever she calls herself theese days
My moms had CH's since 1984 (I think). I was eight years old when my parents split so I dont remember her attacks back then but as i got older and visited her each year, I became more aware of what was happening. The first time I realized how bad her pain was, was when she began to bang her head against the wall. It scared the sh$* out of me! Ther i was , probably 10 yrs. old and mommys hitting the wall w/ her head to DULL the pain! I wished there was SOMEthing I could do. All that I know is to brew a strong pot of coffee, give her 02 and maybe rubbing her neck may help. I dont live with her but luckily her new husband jim does. Now by nature I dont like him, but, she says he takes care of her and if thats true, then Im glad hes there. Knowing from experience, there really isnt anything anyone can do as a bystander but pray helplessly for it to end.
Well, thank you to those who support my mom.
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vig
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Re: Tell us something about your SUFFERER
« Reply #168 on: Nov 26th, 2005, 10:08pm » |
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just do the best you can Dan,
I'm sure she appreciates it...
we do
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never, Never, NEVER quit. -Winston Churchill
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Dan_The_Man_Howell
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Re: Tell us something about your SUFFERER
« Reply #169 on: Dec 3rd, 2005, 3:44pm » |
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Thanks vig. Is there anything else that we can do to not be so helpless?
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Cathi04
CH.com Alumnus
New Board Hall of Famer
I love YaBB 1G - SP1!
Gender:
Posts: 1745
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Re: Tell us something about your SUFFERER
« Reply #170 on: Dec 3rd, 2005, 5:29pm » |
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Dan, you're doing it! You are here, and you are talking about one of my very favorite sufferers.....and ya know what?? She has a lot of love for you!
Thank you for posting about "our Linda".........
You're quite a man, Dan!
Cathi
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Life is not measured by the number of breaths we take but by the moments that take our breath away.
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Dan_The_Man_Howell
New Board Newbie
Im you're huckle berry!
Posts: 12
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Re: Tell us something about your SUFFERER
« Reply #171 on: Dec 7th, 2005, 1:46pm » |
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Thanks Cathi. She is a loving mom .aaahhwww!! Were gettin all mushi!!! lol
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