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Topic: Just need some understanding.. (Read 644 times) |
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erikadb
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Just need some understanding..
« on: Feb 9th, 2006, 8:38am » |
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My name is Erika and I have clusters, I am 29 and am pregnant with my first baby due in June. When I first started suffering about 6 years ago they were terrible I did everything including surgeries to help and nothing helped, they cost me my first marriage. Then just as suddenly they improved, not gone but improved, I had a life again! I met a great man and we married, then the military stationed us in Okinawa, I passed the health screen everything. When we first arrived my sleep schedule was very messed up and I cannot take daytime naps as I get a headache so for the first 3 months it was terrible headaches, constant ER, then sleep got regulated and headaches decreased - no ER in 6 months, limited pain medicine at home. Today I was called in to the office called EFMP who handles medical care and informed that they were kicking me off island because of the headaches, I told them I had been doing exceptionally well and the guy said to me "what you expect me to believe that you were in a mess 6 months ago and you are fine for 6 months just like that?" I started to cry (hey I'm 5 1/2 months pregant!). I asked did he know about cluster headaches how they worked at all??? That yes they can stop/start on a whim, didn't want to listen. I have a life again, I am happily married, I just painted my house and my new babies nursery, we have 2 dogs, and now.....bam....it just seems like being punished for having these and nobody understands. How MUCH IT HURTS physically but emotionally as well, does anyone out there have any advice for me?? Please, I am just stunned and very scared.
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marlinsfan
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Re: Just need some understanding..
« Reply #1 on: Feb 9th, 2006, 8:45am » |
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Hang in there, Erica. THere are a couple of ladies here who have been pregnant and they'll chime in soon! Or oven some of the other people who'll remember what to do when you're pregnant. I can't help you, but I can let you know that we all understand your pain cause we're right there with you!
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E-Double
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Re: Just need some understanding..
« Reply #2 on: Feb 9th, 2006, 8:59am » |
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Hi Erika,
Are you guys enrolled in the EFMP program?
Legally they are responsible to help you!!!!!!
They can not do that.
Read and print out appropriate links
http://www.chhelp.org/
http://www.ouch-us.org/
Anyway, You need to obviously educate them and get some proper treatment.
Since preggers, the best defense without risk will be Oxygen!!!!!!! Though talk to obgyn.
http://www.chhelp.org/mhni.html
and read this as well
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
For those who don't know what it is....
http://usmilitary.about.com/library/milinfo/blarmyefmp.htm
It is based on the public law that states individuals are entitled to a free and appropriate education......
The US military should be providing you free and APPROPRIATE TREATMENT!
Hugs and good luck!
EriC
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| « Last Edit: Feb 9th, 2006, 9:06am by E-Double » |
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maffumatt
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Re: Just need some understanding..
« Reply #3 on: Feb 9th, 2006, 9:04am » |
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listen to Eric he knows his stuff............we do understand
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erikadb
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Re: Just need some understanding..
« Reply #4 on: Feb 9th, 2006, 9:09am » |
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Eric - Yes I am enrolled in EFMP. Thank you for the links I will look at them right now. 
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CHTom
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Re: Just need some understanding..
« Reply #5 on: Feb 9th, 2006, 9:14am » |
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The EFMP (Exceptional Family Member Program) does not have the authority to kick anyone out of anywhere. They are a part of Army Community Services (ACS) and their sole function is to keep track of people in the EFMP. The only way that you can be ordered back home is if a physician determines that your condition is of such severity-and that appropriate medical treatment for it is NOT AVAILABLE, either on or off post-and that for you to remain where you are would be a great risk to your health and, in your case, the health of your unborn child. This decision is not made just by your physician but must be agreed upon by the local hospital commander and other physicians on a committee brought together for this purpose; even if they recommend that, you have a right to appeal. I recommend that you check with JAG as well as with your military physician and the hospital commander. You have rights and the government must prove that your condition is of such a severity that your life, or the life of your unborn child, is in danger due to your medical condition, which is not the case with CH. The final decision making authority is the base commander and you can always go to him/her. Keep a copy of every e-mail that you send and receive regarding this situation-ask the EFMP person who told you that you had to go to send you a copy of the section of the regulation that requires that you must leave. Send e-mails to your docs, etc. so that you have a record in writing from them of what they are attempting to do-these will be useful if you have to appeal your situation. Arm yourself with information about CH to show to your docs and anyone else involved in the decision making process-odds are that they know llittle or nothing correct about our illness. Good lluck!!
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| « Last Edit: Feb 9th, 2006, 9:30am by CHTom » |
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djpaynesr
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Re: Just need some understanding..
« Reply #6 on: Feb 9th, 2006, 9:28am » |
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I'm sorry this is happening to you. The military, while preaching pro-family and pro-soldier rhetoric to the public, can be such ba$tards. I am a veteran myself and I've had to fight for every single benefit.
At least you found this place. I am amazed at the support and the knowledge that flows so freely around here.
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catlind
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Re: Just need some understanding..
« Reply #7 on: Feb 9th, 2006, 3:32pm » |
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Erika, I'm not sure if you are the active duty member or you spouse is, but I am also a military spouse. My husband is active duty AF and we are also enrolled in the EFMP. What you need to do is arm yourself with as much information you can print out from here and OUCH(www.ouch-us.org).
Once you have your info, go sit down and talk with your husbands commanding officer and the first shirt. There is absolutely NOTHING about this disease that requires specialty care. A neurologist is not required to treat clusters, providing you have already had a diagnosis of CH.
I was diagnosed 'officially' at Walter Reed Army medical Center and it was through them that we learned there is NO reason for our family to be denied assignments because of clusters. While I believe we still have an active EFMP file, it has had absolutely no bearing on anything we do regarding the military.
Again, I can't stress this enough, sit down with a mountain of info and your first shirt and commanding officer. IF for some reason that doesn't work out, feel free to email me, I would be happy to set you up with the names of the IG's at the pentagon that assisted me when a very similar issue arose.
If the doctors can prescribe something for you that will help as a preventative and an abortive, you should be fine. In the meantime, make sure your doc (even if it's your OB/Gyn) gets you on home oxygen, 12-15 litres per min. with a non rebreather mask. There are links on the side of this message board that can direct you to the mountains of info you will want to print and sit down with your first shirt. Involve your doctor too, unless he/she is the one trying to send you home.
I know you must feel totally helpless and powerless in this situation, but trust me, you are NOT.
My email is catlind@cox.net and I am more than happy to help you fight the military !#$%!^!$#!@#%^^ red tape. You can win this fight.
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BarbaraD
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Re: Just need some understanding..
« Reply #8 on: Feb 10th, 2006, 6:26am » |
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One other thing -- send copies of everything to your congressman and write a note for HELP from him/her. This can cut the time and red tape in half.
You might mention to everyone that this stress is NOT good on your unborn baby.
good luck and hope this is cleared up soon.
Hugs BD
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RDubois
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Re: Just need some understanding..
« Reply #9 on: Feb 10th, 2006, 8:12am » |
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Wow!!, what an awful situation to be in. It's obvious that the people, with whom you are dealing, are among the millions that know "Zero" about CH.
I'm an old man and retired from the military. I've always received excellent care from the military health care system, to include Walter Reed for my daughter many years ago.
Keep plugging. Others above have made some good suggestions.
In the meantime, I hope you are taking care of yourself for the baby's sake. You should not be drinking or smoking because they will enhance the intensity & the length of the attacks. I guess the authoritities are not helping much in relieving the "Stress" which is another "Enhancer". Force yourself to relax and good luck.
RED
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sandie99
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Re: Just need some understanding..
« Reply #10 on: Feb 10th, 2006, 9:52am » |
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Erika,
I'm so sorry that you've been treated like that. 
But you're not alone. You can find lots of people who understand what you're going through with CH right here. I'm glad that you found us.
Best wishes & lots of PF days,
Sanna
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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erikadb
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Re: Just need some understanding..
« Reply #11 on: Feb 11th, 2006, 7:21am » |
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Thank you everyone for all your support. I am doing the best the can over here trying to get research and information so I can make a presentation to the powers that be. I think I have been doing well, I have never in my life drank or smoked as my dad had clusters as well so I knew that made it worse, also b/c he had them I had no time delay in my diagnosis. When they started 6 years ago they were extremely bad, in hospital on Demerol/Fentanyl PCA, lots of other pain meds, 3 surgeries including Rhizotomy, occipital nerve blocks, and stimulator, to no avail. Then POOF!! began to get better & of course who's to know what made them better. When we first arrived over here I was on 2 Stadol a month, the doctor was uncomfortable w/ that  amount of a "powerful drug" I thought "hell I have been on it for 6 years that's nothing" but alas I went down to only one. So for past 6 months only one a month and lots of shower-banging. I discontinued my Nerurontin and Topamax for the baby though. So this is even more shocking because I thought I was doing so well.....
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