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Discussion:
In Denial
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As many of you know, I was diagnosed in Jan 2010, and have had 2 full years to get used to the idea of having CVID. Nevertheless, I've been in denial about it for most of this last year. Ever since I found out my disease MIGHT have been caused by my seizure drug, I've been so hopeful that I will recover and not have CVID that I've been in denial about having it. I still take my prophylactic antibiotic, and wear masks in public, but I just feel like I can't face actually having the disease now.

I still haven't heard my test results and have no idea whether my Ig levels are recovering. I've called Stanford to find out, but have been playing phone tag with them for the last week or two. I don't know how I'll respond if my numbers are still in the gutter after being off the drug for 6 months.

I think this denial is a lot of the reason I haven't been on much lately. I want to be supportive of all of you, but am really struggling with myself to make time to get online. I usually visit the site via my phone, and some days I'm just too shaky to type that way.

On the upside, I'm doing well. I'm driving again, have more energy and am feeling better overall than I have in the last few years. I'm also going into the office to work most days now, whereas for the last 5 years I was mostly on disability or working from home.

Sending a big hug to all of you, and please know I care very much about each and every one of you whether I'm online or not.
Posted on 02/23/12, 05:31 pm
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Reply #1 - 02/23/12  5:36pm
" ...oh, and welcome to all the new people! :) "
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Reply #2 - 02/23/12  6:26pm
" it seems like a natural response....my daughter recently went to an allergist (i thought she was seeing an immune doc but found out later it was an allergist...and if you have read my previous posts you probably know how i feel about allergists vs immune docs) at vanderbilt and decided she 'doesnt have cvid" she didnt respond to the vaccines and her numbers are low....but she decided she doesnt have it and all the previous docs were wrong....since we see two of the top immune doc and hemo doc in the field here in bham i have no doubt that she indeed has cvid...she had such a bad flare in HS that lasted thru most of her undergrad yrs she is doing better and decided all the docs are wrong....i decided to let it go knowing that at some pt she will more than likely have another flare and she will have to face facts again...but for now whats the harm???? as long as her infections are not flaring she isnt doing damage to her organs...so i have decided to not argue the facts with her and allow her time to accept it when she is ready ...it is a lot to place on an active young person's shoulders...she will have to accept it one day when the next ugly flare rears its head...for me and her we seem to have flares throughout our lives and if it brings her piece of mind to think she is "cured" so be it for now....
i know in her heart she knows she has it, but not talking about it brings her peace...and as long as the infections are under control whats the harm? she has enough knowledge being in her 2nd yr of pharm school that she knows ........so i think what is the harm in her not wishing to accept it at this time.... there are many days i could wish it away...so princess it is very understandable....no need to explain.... "
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Reply #3 - 02/23/12  8:53pm
" I agree we all have days we want to wish this away and have gone through the denial of it all when you are ready you will deal with it. You know when you are sick and when you are not and this is all about quality of life and if that is what you have then be happy Princess there is nothing wrong with it. "
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Reply #4 - 02/23/12  9:41pm
" I completely understand Mel. I so get "ignoring" it to a sense...I sure do! Glad you're doing well!! :) "
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Reply #5 - 02/24/12  9:23am
" I hate to say it, but sometimes denial WORKS! Do whatever it takes to get by and when you do get your answers, take time and deal with it any way you need to. There is no sense stressing about it, you can't change it so why waste part of your life worrying about it. Deny away until you get your answers ((hugs)) "
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Reply #6 - 02/26/12  10:45pm
" Thank you all for your responses, they really helped. I guess it's time to face facts though, I just got my test results in the mail, and I still have CVID. After 6 months off of Trileptal, and 8 months off of infusions, my IgG is 370, IgA is less than 6, IgM is 34, and strangely my IgE increased from 2 to 9.

I'm bummed. I really tried to not let my hopes get up, but I failed in that department. It was a nice dream though. "
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Reply #7 - 02/26/12  10:54pm
" oh well you are in the BEST company EVER and we all need each other to make it through so you know we are here for you!
BIG HUGE HUGS pam "
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Reply #8 - 02/26/12  11:06pm
" Thanks Pam, you guys are wonderful. This group got me through my diagnosis, first IVIG treatments, Sub-Q, and I'm sure you'll help me with this too. I expect I'll be here more again. "
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Reply #9 - 02/27/12  2:54pm
" It does seem surreal at times. Sometimes I think that the doc is going to say "oops, we made a mistake, there is nothing wrong with you and we can't help you". I remember when you tried the trileptal thing! I am sorry that it didn't work out for you, "
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Reply #10 - 02/27/12  5:00pm
" Hey I have been there I denied this whole thing until my Hemo basically told me you can start treatments or catch a bag bug and go meet Jesus, thats when I started doing the research and found this group an other areas to help me cope.
So far I have done well with coping, but this condition has not touched me like it has some of you. I have been so luck this far and haven't had the other conditions that I'm seeing you folks suffer with, I hope I never do as I don't know how some of you get through the day. I pray a lot thanking God for keeping me as healthly as he has I only have the CVID and the IBS/ crohnes. "

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