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Topic: Up-date on Jill (Read 1637 times) |
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marty
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Up-date on Jill
« on: Jan 13th, 2003, 11:20am » |
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As many of you know, Jill has been staying with me for a while now, with her parents blessings. During this time, we have seen number of Doctors and, I am sorry to say, spent a lot of time at the ER.
Jill's official diagnosis is clusters and migraines without an auora. In the last couple of weeks these two SOB's seem to trigger each other leaving Jill in pretty much constant pain. Yesterday she had 2 hours without pain. If someone were to tell me that this was possible, I might doubt that person - but I see, I live it and I am amazed as to how strong she is.
We have now had two days with out an ER visit - before that we had three ER visits in 2 days + an admission to the Neuro Dept at Balboa Naval Medical Center in San Diego.
On Thursday, Jill has an appointment with a Neurologist here in San Diego that suffers from Clusters - he has been involved in her ER visits and we have high hopes for this visit. Pain Clinics and other programs are being scheduled.
Current medication is Maxalt, Imitrex, Depokote and Darvocet.
So, Jill is hurting pretty much constantly but is in good spirits and still strong - she has seen some stars in the distance and also been to the ocean. I do my best to take care of her the best way I know how and she will be okay.
I am also in constant contact with her parents and sending them as much info as I can to make them "super supporters". Jill will go back home on the 23rd of January.
Thanks to all of you that have sent presents to her and supported her while she is down here - it meant a lot to her. She will post herself but she is not thinking straight because of all the meds and the constant "hits". She is going through a very hard time and the few hours that she is left alone without pain, is pretty much time to gather some more strength for the next round.
Thank you all, from the bottom of my heart
Marty
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SommelierCH
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Re: Up-date on Jill
« Reply #1 on: Jan 13th, 2003, 11:48am » |
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Excellent job Marty, thanks for the update.
Wandering around the dark wilderness of the Medical Community while in constant pain, makes it impossible to find a solution by yourself.
Peace,
David J.
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The mad viking
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Re: Up-date on Jill
« Reply #2 on: Jan 13th, 2003, 11:51am » |
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Excellent job Marty, thanks for the update.
Svenn
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Always Look on The Bright Side of Life
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brain_cramps
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Re: Up-date on Jill
« Reply #3 on: Jan 13th, 2003, 11:59am » |
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Thanks for the update AND all of the help you have been giving her. I'm sure a lot of people here appreciate your efforts.
Hoping and praying for you Jill,
Grant
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Peppermint
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Re: Up-date on Jill
« Reply #5 on: Jan 13th, 2003, 1:55pm » |
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Marty.
You are an amazingly generous and supportive person. It seems the road is now open for Jill to get to the relief zone because of you.
Continue to hang tough - prayers for you both to get to a solution for pain free days and nights.
Hope to hear more good news real soon.
Pep
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cootie
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Re: Up-date on Jill
« Reply #6 on: Jan 13th, 2003, 2:30pm » |
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Good luck to Jill and you Marty.....sounds like she's in good hands..a lucky girl !!! Pam 
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Virginia
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Re: Up-date on Jill
« Reply #7 on: Jan 13th, 2003, 3:06pm » |
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Thanks for the update Marty. I didn't realize that Jill was staying with you but I'm so glad that she has some "in-person" support! She needs it! You're a great guy to do this for her, she's lucky to have you as a friend.
Still praying for her!
Virginia
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Opus
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Re: Up-date on Jill
« Reply #8 on: Jan 13th, 2003, 3:42pm » |
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Marty, Thanks for being there for all of us. Please remind Jill that all the peaple on the prayer card and a lot more are lifting up her name in prayer.
Opus 
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domm
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Re: Up-date on Jill
« Reply #9 on: Jan 13th, 2003, 4:43pm » |
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Thanks Marty - tell Jill I was asking for her.
domm
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Brassbear
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Marty,
Thanky you so much for standing by Jill. I too suffer from both migraines and the beast. Fortunately, I've not had to deal with both at the same time.
Both of these conditions take a "super-person" to fill the position of supporter, and finding someone willing to stand by and give of themselves is truly a blessing to those of us in pain.
Just remember, we don't want you to "fix" it. We need you to know what we are going through and to be willing to stand besides us. Offer us comfort when you can, and stand aside when necessary.
Without Mary here to support me I would hate to think what added misery might have assaulted me.
To all of you supporters; the Creator put you with us for a reason. Don't give up. Hang tough and continue to fight the good fight. And yeah, we know how tough it is to be with us at times. We only hope you can understand the depths of our appreciation.
Thanks Marty.
Michael
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marty
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Re: Up-date on Jill
« Reply #11 on: Jan 13th, 2003, 6:38pm » |
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All you guys and gals.. you are the basis for the support that I can give - I have learned it all from you.
DJ, who started this thing, by bringing us together have made it possible for us to bring the support function one step further by allowing us a place where we can scream, yell and shout and be understood. People from all over the world speak the same language and no matter if you are pink, green or purple in your pigmentation, no matter in who or what you believe in, no matter who your ancestors were.. here you count for what you say and how you act.
My point in all of this is that I believe that since I am an episodic CH sufferer, my job is not over just because I am not in cycle.. when I cycle out, I automatically become a supporter.. in my mind, an episodic is a suffering supporter that must step into the role of a supporter when he/she cycles out. We can not just accept help and support when we are in cycle - we must also pay our dues when we cycle out.. as supporters.
Marty
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2late
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Re: Up-date on Jill
« Reply #12 on: Jan 13th, 2003, 6:41pm » |
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thanx marty .........2late
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Charlie
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Re: Up-date on Jill
« Reply #13 on: Jan 13th, 2003, 11:05pm » |
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That was great Marty.
Very glad you are there for her and thanks for the update. Say hi for us
Charlie
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Edna
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Re: Up-date on Jill
« Reply #14 on: Jan 14th, 2003, 8:55am » |
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Marty, stretch REALLY REALLY hard with your arm.......and give yourself one HUGE pat on the back for all you're doing!!
I must say that all of us here are extrememly pleased to have received your update on Jill. Let her know we are thinking of her and praying for her and you both.
In your persistance to educate her parents and rear up some support there, I'm hoping that since you're in touch with them that you are perhaps also encouraging them to visit here with us. That would be such an extreme asset to both Jill and them for in the future.
Keep up the good work soldier,
well wishes for you both,
EDNA
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RetUSN
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Re: Up-date on Jill
« Reply #15 on: Jan 14th, 2003, 9:42am » |
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Hi,
I'm Jill's dad. We were hesitant in giving Jill our support
to go to San Diego and stay with a stranger, until we
talked to Marty on the phone. We are very glad that
she is there and getting his help. He is an amazing person. I have to admit that I was pretty ignorant of Jill's pain and what she was going through. I never
imagined that it was that painful. Jill is a wonderful person and a wonderful daughter. I am proud of her and always have been. She is strong, dedicated and real stubborn. Since she has been with Marty and getting the support she needs my wife and I have been in contact with her and even though she is 3000 miles away I feel closer to her. I guess I what I'm trying to say is that we are ready and want to give her all the support she needs. We have always been supportive of her in all she does and I thought in all she needs. I thank Marty so much for enlighting us about cluster headaches and giving us guidance on helping Jill. We are grateful for all he is doing and what he has done and I am especially grateful for all you that has helped Jill in her time of need and have been true friends to her. Marty, I'm not much on words and words alone cannot tell you how I feel right now, but thanks for being there for Jill and especially for me and Barbara. This website and message board is a great way of getting info out to all of us who do not know what you
are going through.
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cootie
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Re: Up-date on Jill
« Reply #16 on: Jan 14th, 2003, 10:09am » |
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Hi Jills dad........you sound like a PROUD supporter.....and I am the same at my end of the world also. I didn't understand the pain myself many many years ago exactly...no one knew anything about them to help us or me to understand better what was goin on and how severe the pain is. This site has helped me more ways then one in what lill time I been on here.....wish I'd of known about it sooner. There's sum honestly dedicated people on here.....a real one on one expirience. Pam
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brain_cramps
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Re: Up-date on Jill
« Reply #17 on: Jan 14th, 2003, 10:45am » |
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Hi Jill's dad,
No matter how tough it is for a sufferer to explain the pain, it has to be at least that hard for a non-sufferer to imagine it. (if that made sense?)
The pain is VERY REAL. As well as being 'strong, dedicated and stubborn', she has more than proven her 'toughness' to everyone here (as well as herself).
I know Jill must be very glad to have you 'on board'.
Hoping and praying for a break for her,
Grant
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RetUSN
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Re: Up-date on Jill
« Reply #18 on: Jan 14th, 2003, 10:54am » |
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My name is Ralph, forgot to sign my reply.
Jill's dad
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talitha
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Re: Up-date on Jill
« Reply #19 on: Jan 14th, 2003, 11:10am » |
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Marty, God bless you big time for what you are doing to support Jill...
Jill praying for a break in the pain for you...
Jill's dad, bless you for supporting Jills trip to stay with Marty.
And all the rest of you clusterheads and supporters...I'd be dead right now if I hadn't found you, no kidding and no exaggeration...when this cycle ends you can count on my support..
grace and peace and PFDAN to all
kathy
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Virginia
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Re: Up-date on Jill
« Reply #20 on: Jan 14th, 2003, 11:24am » |
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Hi Ralph!
So glad you've come to the board! Because of our locations most of us can only offer Jill our advice & prayers. She needs you & your wife probably more than any other time in her life. She's got a hard road in front of her but it will be 100% easier with constant supporters at home.
Yes, unfortunately this pain is very real. And in many cases debilitating. Many of us consider suicide (not trying to scare you). But for most of us, we couldn't get through it without our supporters. I've been going through these things for almost 18 years and if it wasn't for my Mom, I would be lost!
Ralph, you just don't know how happy you have made us by coming to this board.  Your post brought tears to my eyes. I can tell you love Jill alot! Whenever you have questions about what Jill is going through, please come to this board.
We welcome you as a supporter!! Make yourself comfortable and read as much as you can on this website. You will find so much more info here than from any Dr's out there.
Feel free to come in & post as often as you can! Send all our love & prayers to Jill!!
Virginia
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The Clusterhead formerly known as 9erfan.
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The mad viking
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Re: Up-date on Jill
« Reply #21 on: Jan 14th, 2003, 11:26am » |
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Marty, God bless you big time for what you are doing to support Jill...
Jill praying for a break in the pain for you...
Jill's dad, bless you for supporting Jills trip to stay with Marty.
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Always Look on The Bright Side of Life
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Roxy
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Re: Up-date on Jill
« Reply #22 on: Jan 14th, 2003, 11:51am » |
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Marty, You are an amazing man, actually an inspiration to us all. Thank you for the help you have given.
Ralph, I'm glad you now understand what a nasty thing ch's are. You sound like you're going to make wonderful supporter's for Jill. Just hang in there...it's a pretty long and painful road.
Roxy
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Slammy
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Re: Up-date on Jill
« Reply #23 on: Jan 14th, 2003, 12:54pm » |
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on Jan 14th, 2003, 9:42am, RetUSN wrote:
I have to admit that I was pretty ignorant of Jill's pain and what she was going through. I never
imagined that it was that painful....
I guess I what I'm trying to say is that we are ready and want to give her all the support she needs. We have always been supportive of her in all she does and I thought in all she needs. I thank Marty so much for enlighting us about cluster headaches and giving us guidance on helping Jill.....
We are grateful for all he is doing and what he has done and I am especially grateful for all you that has helped Jill in her time of need and have been true friends to her.....
This website and message board is a great way of getting info out to all of us who do not know what you
are going through. |
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I've read this post several times. I do not think I have read a more significant post in some time that sums up the power of this site and all of its family. Everyone should be very proud to be here, knowing how much you all have touched each other lives, especially Jill and her family. Words cannot describe the impact.
What an amazing place!
Slammy 
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SFChris
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Marty/Jill/Ralph,
Well, this has got to be the very best thread that I have read on this message board in the year that I have been coming here! I am inspired and proud to be part of this this crazy, yet beautiful family. Today, as DJ is about to undergo surgery, I sit here amazed at what he accomplished with this site - the caring and selfless act of kindness and compassion that Marty has demonstrated is extraordinary.
Many of us have been very concerned about Jill - we feel protective of her...it's great to see the family support she will receive. All I can say its WOW!!!
Chris
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