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pleasantlyblue
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glad I found you!
« on: Jun 14th, 2006, 2:56am » |
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Hi all! I'm Marie and am in the middle of one of my worst cycles. I'm 35 and have had ch since I was 11. They were so severe as a teen that I missed my entire sophomore and junior years of high school and had to have a tutor at home that was willing to show up whenever I was pain free...day or night.
Back then, few doctors believed that children could get ch. Most of the meds me ended up giving me rebounds. When they finally did take me seriously, they put me through the rounds: beta blockers, anti-depressants, steroids, verapamil, stadol. ...you name it. And even then, they usually gave me bad combinations of drugs and improper doses. I had a pediatrician put me on BOTH Inderal and Indocin as well as Elavil at the same time when I was 15. And evidiently the doses were appropriate for an adult, not a 90 pound teenager. I passed out in school, and apparently my heart stopped in the ambulance on the way to the hospital. (what a day that must've been for my mother!) Once at the hospital, the doctors wanted to commit me as they believed I had intentionally overdosed in an attempt at suicide. SRS became involved and tried to take custody of me from my parents. Luckily, the doctor admitted his "error" in court, and of course we moved on to yet another in the long line of mis-informed doctors.
Somewhere along the line I learned to live with this hell. I coped by endless showers and my usual "agony dance" and just hung on for dear life during cycles, breaking down occasionally and going to the hospital for knockout shots (I considered myself weak everytime I did that) Then I found Imitrex injectibles when I was in my late 20's and that was the first bit of relief I've ever had.
I choose not to share my ch with many people because no one seems to understand. "It's just a headache, how bad can it be?" A priest at my Catholic high school (the same one I left in an ambulance) tell me it was "all in my head" and I was "just being dramatic" or trying to get out of school. Even my husband and kids, who see the hell I'm in, get tired of it, which leaves me feeling soooo guilty. It's terrible that my two oldest boys (12 and 17) have been trained to load my injector pen and give me the shot in case I'm to incapacitated to do it and my husband isn't home. I wish I could say they've never had to do it, but that just wouldn't be true. In fact, my 12-year old had to give me a dose today. Again, the guilt!
My cycle, which seems ridiculously long this time, started in February. I'm on my second round of prednisone, and verapimil, but unfortunately they don't seem to be curbing it this time. I am fortunate in that I have two friends that are doctors and they are both doing their best to keep me in Imitrex injectible and nasal spray samples over what my insurance will cover. (trust me, after reading other posts, I KNOW how lucky I am!) I'm fairly certain I'm peaking now, as the frequency and severity of my headaches are pretty much at that "I want to die" point. It scares my husband so much when I say that, but when you get to that place...any relief is relief.
I was so grateful I found this site. I've only known one other person with ch, my brother, and he refuses to talk about it unless he's in a cycle. In fact, he avoids me when I have a cycle because it reminds him that he has ch too. This is the first time I've ever believed that anyone else on earth but the two of us had this. I'm not sure what good it will do me, or anyone else for that matter, to post this. I guess I just needed to feel like I wasn't such a freak for the first time in my life. Even tho I don't know any of you, you have no idea how grateful I am that you exist!
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marlinsfan
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Re: glad I found you!
« Reply #1 on: Jun 14th, 2006, 8:55am » |
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Welcome home, Blue. Your story is like many of ours, so we understand completely what you're going thru.
Have you tried aborting with Oxygen? Check out the oxygen info link on the left. It's my weapon of choice to battle the beast when he comes knocking. Hi flow (>8 LPM, thru a non-rebreather mask http://www.clustermasx.com) will knock it out within minutes. It's safe, cheap and doesn't cause rebounds.
here's more info.
http://www.brightok.net/~mnjday/chtherapy.pdf
PF wishes.
Jose
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spidey426
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Re: glad I found you!
« Reply #2 on: Jun 14th, 2006, 10:13am » |
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Yes, welcome home: ) I'm also new here and believe me, you're going to love it here: ) It was the best feeling in the world to find this place and know that I am not alone.
Sorry you have not had much luck with meds, seems to be the case for alot of people: / I'm resorting to the magic mushroom approach today, I've heard alot of good things about it and hopefully I will have some luck with it. Unfortunately I'm also trying magnesium, and despite the fact I'm at my cycle peak, I've felt like a million bucks for the last 20 hours since starting the Magnesium... so, if I do have good results from the mushrooms I won't know if it's from them or from the Magnesium.
Anyways.. pain free wishes and god bless.. feel free to vent here, we're good listeners: )
stay strong: )
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Linda_Howell
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Re: glad I found you!
« Reply #3 on: Jun 14th, 2006, 12:11pm » |
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Hi and welcome Marie,
I am so sorry that you seem to not have a support system but this place is here to make up for that. Ask questions, vent your frustrations and just become a part of our "family"
You said:
Quote: It's terrible that my two oldest boys (12 and 17) have been trained to load my injector pen and give me the shot in case I'm to incapacitated to do it and my husband isn't home. I wish I could say they've never had to do it, but that just wouldn't be true. In fact, my 12-year old had to give me a dose today. Again, the guilt!
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and I have to ask this...WHY? why is it terrible and why do you feel guilty? In my opinion you are teaching them empathy and to be responsible. You're also teaching them that life isn't always a bed of roses. Things they need to know.
If you haven't used oxygen for aborting a hit..try this link and maybe print it out and give it to your Dr. 02 is safe, effective, and cheaper than most of the drugs we take.
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
Good luck to you and stick around.
Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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Charlotte
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Re: glad I found you!
« Reply #4 on: Jun 14th, 2006, 3:32pm » |
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Welcome aboard. I too am grateful to know other people w/ch. My hubby and I have met a few people on our board, and Joe thinks we are emotional, analytical, and hyper. It is good to have someone to talk to.
Once again, welcome.
Charlotte
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Linda_Howell
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Re: glad I found you!
« Reply #5 on: Jun 14th, 2006, 4:44pm » |
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Quote:| Joe thinks we are emotional, analytical, and hyper. |
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really? He got all that from meeting 8 to 10 of us in sacramento.?
Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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Charlotte
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Re: glad I found you!
« Reply #6 on: Jun 14th, 2006, 6:43pm » |
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Yep, and from one cup of coffee with Joe/Guiseppe in San Diego. He's a quick study. Of course, he thought you guys were wonderful.
I still don't have the internet at home. So I still use the library and my work computer at break or after work.
I think there were only 7 clusterheads, and the rest of the beautiful bunch were supporters.
I still want to know how many ch people are color blind.
And, please, if anyone has to give me a nickname, I prefer Swiftie to Quickie.
Love, Charlotte
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| « Last Edit: Jun 14th, 2006, 6:45pm by Charlotte » |
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pleasantlyblue
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Re: glad I found you!
« Reply #7 on: Jun 14th, 2006, 7:18pm » |
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Wow, I didn't really expect any responses! Thanks so much! I especially appreciate all the info about O2. I talked to my Dr. today about it and set up an appt. but he seemed a bit hesitant about it. Any idea why?
I showed my husband and kids around the site today, I think it really helped. I could see the relief/concern (tears) in my husbands eyes when he read that I'm not the only one that wishes for death when my HA is a 10.
Today's been a rough one, I've already been hit 6 times, but I must say that it's been a bit easier just knowing this site is here. Now if I can only get my brother to spend a little time here...
Again, I can't thank you all enough for your kindness.
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Charlotte
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Re: glad I found you!
« Reply #8 on: Jun 14th, 2006, 8:08pm » |
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If he is hesitant, be persistent. Print out the info in the link above. If he has email, email him info.
This is a responsive bunch of folks. I hope you stick around. Sometimes we get cranky.
Charlotte
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| « Last Edit: Jun 14th, 2006, 8:08pm by Charlotte » |
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Linda_Howell
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Re: glad I found you!
« Reply #9 on: Jun 14th, 2006, 9:40pm » |
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I showed my husband and kids around the site today, I think it really helped. I could see the relief/concern (tears) in my husbands eyes when he read that I'm not the only one that wishes for death when my HA is a 10.
To Maries husband and children.
No, she is not crazy.
No she is not doing this for attention.
She suffers from a condition we all have, called cluster headaches.
The best thing you can do for her is to understand and stand behind her and offer help.
Please see this link: http://www.clusterheadaches.com/wwwboard/index.html
This link applies to husbands/wives as well.
Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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Bert
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Re: glad I found you!
« Reply #10 on: Jun 15th, 2006, 6:55am » |
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It is through this site that I learned about oxygen. I spoke to my neurologist about it and he was pretty hesitant too. I think it has to do with the fact that most meds rely on chemicals rather than the natural thing. Anyway, oxygen is a miracle!!!!!!!!!! So please persuade yor neurologist and get the stuff. I hope it will have the same effect on you. It aborts the hit after five minutes and it has none of the negative side effects that injections have. Welcome to the cluster community and please let us know how you are doing.
Best regards from Holland
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Sandy_C
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Re: glad I found you!
« Reply #11 on: Jun 15th, 2006, 5:16pm » |
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Hi Marie. Your story was heartbreaking, but not unfamiliar to all of us. Having to go through so many years of mis-diagnosis, lack of understanding by those around you, is more frightening than it is frustrating.
Just know that you have found an extended family here, who know exactly what you are going through. Read everything you can on this site, and ABOVE ALL, try the oxygen!
Bring your brother here. It's apparent that he's very much afraid of this CH affliction because he won't discuss it when either you or he is in cycle. While he's out of cycle is when he, and you, need to keep learning and reading at this site. While you are in cycle - you need to be here - every day. Someone is always here 24/7/365 to help you.
Sandy
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pleasantlyblue
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Re: glad I found you!
« Reply #12 on: Jun 16th, 2006, 9:20am » |
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Hello again. Sorry I didn't post yesterday. Was a pretty rough one. Guess I just didn't feel like writing about it. Today seems to be starting off better. Been PF for about 4 hours now. Planning to spend the day getting ready for my step-daughter who arrives tomorrow for the summer. Going to make her favorite: whipped peanut butter pie.
I do think you are right, Sandy, I should spend time here every day. Even though I didn't post, Shane (hubby) and I did a lot of reading. He seems more excited about the oxygen than me! I'm learning a lot about how he feels about my CH. It's not so much that he's not supportive, just scared. I guess until he saw this place, he thought I had a tumor or something since he had never heard of anyone having this but my brother and me. In his mind it seemed to rare and severe not to be life-threatening. It's giving us both hope that this might be manageable. I have all of you to thank for that.
It seems to me that I don't have much to contribute to this site right now...only need. The need to be understood and heard, the need to not feel alone. Not to mention the need for all the practical, medical and coping advice you all seem to have to offer (for which I am very grateful). I'm hoping that as I get to know everyone, and get used to the idea that I'm not such the freak I thought I was a few days ago, that I will have just as much to offer in return. Besides, since Charlotte says you all are "emotional, hyper and analytical" my husband says I should fit right in. Is that a common trait for CH sufferers?
Thank you all again for the kind words and support. I'm gonna try to stop in a few times today just to help keep myself going. I'm very grateful to you all. What a wonderful place this is!
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Richr8
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Re: glad I found you!
« Reply #13 on: Jun 16th, 2006, 12:05pm » |
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Welcome!
I didn't read where you have gone after the O2 yet. As soon as you can, print out the O2 info from this site and take it to your doc. If he won't prescribe it , there are other ways to get it through a welding shop or other sources. If it works for you, which it does for may, it's like, as someone stated prviously, "a miracle." Please pursue this until you have th opportuity to try it out. A non-rebreather mask
http://homepages.nildram.co.uk/~tritech2/clusterx/index.html
and 15 LPM delivery rate gives the greatest benefit.
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pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
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pleasantlyblue
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Re: glad I found you!
« Reply #14 on: Jun 16th, 2006, 3:40pm » |
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Rich, I scheduled an appointment with my Dr. next week. My husband printed out everyting he could find on the subject to take with us because my doc seemed hesitant on the phone about prescribing it (you guys have a lot of fantastic links). I've already got the non-rebreather mask...my mom died 3 years ago from COPD, so my dad is sending me everything she had. Of course all her O2 had to be retuned to hospice when she died. But he does have all sorts of things like the mask and bags to carry smaller tanks and so on.
It will be strange to wear her mask tho. And since she was so ill for so long (very painful way to die) my sister and my oldest son have said that while they hope the O2 provides the releif I seek, they both want to try to avoid seeing me do it. Painful memories. As usual, my brother (the other clusterhead in the family) has no oppinion. He just wont discuss the subject unless he's having a cycle himself. But then again, denial is his thing...he wont discuss our mom either, or any other painful topic...
On a lighter note, today hasn't been as bad as yesterday. Only 3 hits so far today, (Imitrex) tho I have been shadowing on and off all day, I've been more productive than I have in weeks. I do have a question tho...does anyone else become edgy and fidgety and well, an not a very nice person when they're on the prednisone taper? Just wondering if there is anything I can do to stop biting off everyone's head.
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chewy
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Quote:| does anyone else become edgy and fidgety and well, an not a very nice person when they're on the prednisone taper? |
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Yup. Its a side effect of the pred. That and an appetite increase the would make an alligator envious.
I think the relief of being PF makes me a little anxious about getting on with things to. Tend to overcompensate.
(And if an envious alligator gets to close I'll eat him to!)
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| « Last Edit: Jun 17th, 2006, 9:10am by chewy » |
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Guiseppi
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Re: glad I found you!
« Reply #16 on: Jun 17th, 2006, 10:30am » |
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Howdy miss pleasantly blue and allow me to also extend a warm welcome to our crazy world. Your brother suffers from a unique condition called being male. Its characterized by an inability to seek any medical information from anyone other then ourselves, and a firm belief that anything can be overcome if we ignore it long enough!!
I was only partially cured of this malady when my wife found this site for me and saved my sanity I get that same edgy, pissed off, "Iwanna smack someone in the head" feeking when I'm on my prednisone taper. And like Chewy said, you can't stop eating! Fortunately I don't have to stay on more then 10 days or so. Really hoping the oxygen helps you as much as it has me.
Guiseppi
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Why are all sensors, seeking intelligent life, pointed AWAY from earth?
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Linda_Howell
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Re: glad I found you!
« Reply #17 on: Jun 17th, 2006, 10:49am » |
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Quote:| It seems to me that I don't have much to contribute to this site right now...only need. |
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And that's o.k. We were all there at one time. When you have a better grasp on how to handle your CH's, that's when you stick around here and help out others who are having a hard time. It's called "paying it forward" 
P.S. Not all of us are.. emotional, hyper and analytical 
Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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kcopelin
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good grief
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Re: glad I found you!
« Reply #18 on: Jun 17th, 2006, 10:55am » |
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I am so glad you found us. I remember the feelings I had when I first discovered that there are others who suffer. O2 can be a bear to get-for me the docs were very confused that I did not want demerol but O2. Finally convinced them.. It works for alot of us-not a cure, but an abortive, and alot cheaper and safer than triptans.
Everyone here goes through times of having nothing to offer, just needing support or to vent. That's what we are here for.
Welcome home!
By the way, we ARE NOT emotional , analytical  , or hyper  . And if anyone says that I'll... I'll... I'll throw a toad at them, or something. So there.
Kathy
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Words count, chose carefully.
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Guiseppi
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Re: glad I found you!
« Reply #19 on: Jun 17th, 2006, 11:53am » |
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Okay I was really really quick to analyze those last two posts and as a result I can't stop crying. Point proven!!!
Miss Pleasantlyblue, please ignore these last three posts by the hyper, analytical and emotional arm of the board.
Seriously, I agree with Linda and Miss Copelin, you have much more to offer then you realize. Often all people need is an understanding ear. From reading your first post you clearly have that. Please do stick around.
Guiseppi
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Why are all sensors, seeking intelligent life, pointed AWAY from earth?
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pleasantlyblue
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Re: glad I found you!
« Reply #20 on: Jun 17th, 2006, 4:27pm » |
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Wow! So much to comment on! First of all, Kathy, you hit the nail on the head (no pun) when you mentioned how it felt to find out there are others like me. 25 years with CH and this is the first time I've known that anyone else but Ed (brother) and I have this. So validating! It's strange, but as I read thru other threads, you guys use the same terminology that my brother and I always have. We even used the kip scale and we didn't know it existed! We've always called it the "demon" too. We've also been splitting Imitrex doses for years.
I ventured out last nite with hubby for dinner with friends (first time in two weeks) They asked if I was in a cycle cuz I didnt drink (trigger) and I was eating off everyone else's plate (pred). I found myself going on and on about this site. I've never really talked about my CH with many people before cuz I felt like a freak. Knowing you guys are here made me feel more okay with talking about it. Shane even gave them a demo on how to load and inject the Imitrex and how it works. It really does make you feel more in control and less like you're at the mercy of the demon.
As for paying it forward, Linda and Guiseppi, I can't wait for the opportunity. Even though I'm still not PF, I can honestly say that things are better because I found you all. I hope I can give someone else that feeling. I've been especially touched reading about the parents of kids with CH. Every HA I ask myself how I survived this pain as a child. The answer is my parents. I cant imagine watching my kids suffer...I'd much rather have the pain myself.
Well, I think I've rambled enough. Are long posts poor etiquette? Just cant help myself, I feel sort of excited about finding you all. Given time I'll get to know everyone and my way around. I know one thing already: stay away from Kathy if she's emotional and holding a toad! LOL Seriously tho, thank you all so very much for the support. My family has noticed the change in my morale and they're kind of amazed considering I'm on the pred.
PFDAN wishes to each of you!
Marie
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