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Need Understanding (Read 785 times)

dv8r_dragon

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small deeds inspire big

Posts: 25
Kansas
Gender: female

Need Understanding
Jul 20^th, 2011 at 3:05pm

SO, today I am posting because like most clusterheads I need a little understanding. My kids and my friends...and my spouse most especially are great, but obviously they can't understand what I'm going through.

My Father, Mother and Sister are the ones who think that I should be able to just "work" through it. UGH!

So I had a really bad 2 week cycle. I had to go to the emergency room. They didn't admit me this time so I'm very happy about that. My oxygen is finally being delivered! YAHOO. That's been the biggest relief for me. Best birthday present ever, I'm sure you guys will agree with that...except to have a break for my bday. That would've been nice too.

It's been a long time since I've been on the forum. I had another surgery on my shoulder in August 2010. Unfortunately I am still hurting from my neck surgery. I'm supposed to have an MRI and CT to figure out what might be causing the problem. It might be part of the reason i have such short breaks between cycles. The longest break I've had in the last 6 months has been 2 weeks. Before I would have 2-3months, but that has always been the longest. Hopefully will figure something out soon. Until then I'll have my ox and Imi...well I'll still have it but hopefully won't need it as often.

Thx for being there for me everyone!

I'm not crazy...just misunderstood

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: Need Understanding Reply #1 - Jul 20^th, 2011 at 3:57pm Print the following "Letter to Employers and Colleagues" and lay it on 'em. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or
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Linda_Howell

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Santa Maria, Ca.
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Re: Need Understanding
Reply #2 - Jul 20^th, 2011 at 5:03pm

Quote:

My Father, Mother and Sister are the ones who think that I should be able to just "work" through it

Funny isn't it? The one's you would expect to be supportive, to be helping you look for answers, the one's who you would think will listen...aren't.

Print out that letter that Brew (above) gave you the link to and give it to them all. If that doesn't help, you're going to have to accept that they just will not be there for you in this. Most of us gave up a long time ago trying to make others in our life understand.

I remember you from before. Glad you came back.

Hurt people.....hurt people. Think about it.

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Beth E

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Thanks for understanding
CH.com!

Posts: 88
Union City (Erie) PA
Gender: female

Re: Need Understanding
Reply #3 - Jul 28^th, 2011 at 2:50pm

I, as a supporter of a chronic CH for almost 16 years...understand where you are coming from as far as your "supporters" not truly understanding everything. We cannot...not everything. But after being with my CH husband, I really get irritated with others who make light of his condition. After all these years, you would think someone "making big" or "faking" of the situation would tire of it. It is a daily battle for US. I say US because I try to take the time to teach others about what is going on. I definitely do not know everything about this nor how to manage it better; but once I begin talking to some close friends or family, they admit...they never realized.

Like many CHs I've been reading posts from, he is not one to talk about it much, and definitly not talk at all during a hit. Communication is rough as it is and the demons don't make it any easier. I have learned to be satisfied in myself and not to look to my spouse to fulfill my needs. Each time we have a good moment together is a gift. Not expected, but appreciated. I will pray that at least your family will begin feeling that way. I am sorry you feel you are going it alone. Remember that you are not. Continue to come back and read and post. I have a feeling you will find great support here. I am new here, but can hardly stop reading about the lives of others on here. Those who fully understand and can feel your pain and uplift you! God Bless

Beth

No longer Helpless now!

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QnHeartMM

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I AM a Phoenix!

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San Diego, CA
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Re: Need Understanding
Reply #4 - Jul 28^th, 2011 at 3:14pm

Beth what a beautiful post. I agree - I am extremely protective of Joe when he's getting hit. I do my best to shelter him to a safe place if we're out and about. From there I try to be as normal as possible. I make sure he has what he needs - o2, energy drink, icepack, peace and quiet, and then leave him be. I also try to educate others on what he goes through. We are transparent when it comes to our family. I mention our CH gatherings in family newsletters (yes, we have such large familes on both sides that we publish monthly newsletters!) to educate them as well. One reason I do this is for the future identification and proper treatment of any nieces/nephews who may end up with CH.

Treat people with kind words.

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