Common Variable Immunodeficiency Support Group

Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.

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In Denial

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.

Replies

PrincessButtercup
PrincessButtercup

...oh, and welcome to all the new people! :)
deleted_user
deleted_user

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....
deleted_user
deleted_user

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.
deleted_user
deleted_user

I completely understand Mel. I so get "ignoring" it to a sense...I sure do! Glad you're doing well!! :)
kelli1b
kelli1b

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))
PrincessButtercup
PrincessButtercup

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.
deleted_user
deleted_user

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
PrincessButtercup
PrincessButtercup

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.
deleted_user
deleted_user

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,
deleted_user
deleted_user

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.
deleted_user
deleted_user

Mel,
I am actually very pleased for you, even though your diagnosis still stands. Try to embrace the simple gift of knowing again. Even as little as 10-15 years ago you may not have been given a diag. much less, gotten appropriate treatment and of course, not ever found your online family.

I'm sure that we all experience denial at least some of the time. It's a great defense mechanism though. Just imagine walking around on an average day constantly hearing a little voice in your head repeating,'you have very serious health conditions and your days are numbered'... and it goes on and on. Following my last hospital stay of a week, I became obsessed about how I was going to die. After spending at least 3-4 days almost dying in the hospital,it really perked my attention. It's crazy.

We can keep doing everything by the book and following dr.s orders always, and still face a randomly non-threatening virus or bacteria buzzing around in the air just waiting for a great host like us.

I guess all I mean to say is, thank you for being here. Your wisdom and demeanor have often been there to lift me up and make me feel not so lonely. I am so sorry for your personal disappointment, but selfishly pleased, that you will still be here for this. I love you dearly and so do many others. That's one thing that you cannot put into denial.
PrincessButtercup
PrincessButtercup

Thanks Fezzy,

That is very good advice...as one who got me through my first few days after diagnosis, you still have a lot of wisdom to share. It helps me feel more grounded. :)

And thanks everyone else. I hope that since I'll be here more often again, I'll get to know the new people better, and I'm happy that I'll be seeing my dear "old friends" more too. :)

Your words help.
deleted_user
deleted_user

I have a story kind of like that a few months ago I went to my immunologists and I don't know if they have an allergy student come in before your doctors where you go but at my office they do. So my exact dx quote the doctor last time I went is "CVID with the variable being SADDing" we will have to ask the experts on here if I did that right but any way back to the story.... so first she asks me why am I here and I say follow up for immunology for ivig and she looks at my paper work and the first page she looks at she says why are you taking that you don't have any thing wrong with you and I said to her you better not say that I have been wasting my time for that last few months and she walks out of the room....I sit there for about 3hrs and then the doctor comes in and says that I got bumped to the end of the list because I said I didn't want to see her.....she didn't tell him that she made a mistake and didn't look at the paper work and told me that I didn't need to be treated.
PrincessButtercup
PrincessButtercup

That's messed up, Tink! So did they get it right when the immunologist finally saw you?
deleted_user
deleted_user

I question him about my taking infusions when he came in and had to listen to a half hour rant about why I needed them and I still think he thinks I was mean to the allergy person because every since then only he comes in to see me.