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Self-Esteem with CVID
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I've been feeling down on myself lately and I think it's because of being sick all of the time. I feel like a charity case at work, and a burden to my family and loved-ones. I know (hope) that it will get better, but right now my self-esteem is pretty low. I am fortunate that the people in my life love me enough to stand by me through this, but I feel like I'm dragging them down, and afraid that they will get burnt-out and leave.

This isn't a new feeling to me, but a few years ago I was in a "healthy" phase where I got sick less and had energy in-between illnesses. I was able to work a lot and was called a "miracle worker" at work. I guess I'd really gotten my hopes up about having a healthier future, when I started having seizures that put me on disability and took my license. Now the seizures are finally under control, but I've gotten the CVID dx. Even though I've always been sick, and at one point only had a life expectancy of 30, this is kind of getting me down. How do the rest of you cope with such feelings?
Posted on 03/27/10, 04:48 pm
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Reply #1 - 03/27/10  6:50pm
" Hi Princess. I can relate to what you're talking about. Self-esteem has a lot to do with goal accomplishment. I feel like with this diagnosis came a lot of self-doubt. Like being out of control and not being able to fully participate in my life. I'm worried about making travel plans - and I LOVE taking trips. My head thinks up wonderful plans (like gardening, going to a concert, or expanding my business, etc.)and I have to wonder whether I have what it takes. I mean I have germ issues. I have energy issues. Every new muscle ache or dizziness, or sore throat puts me on red alert. I have IVIG every three weeks.

I recently got married (Dec.29) and even though we'd been together 11 years, I really had to search my heart about making that committment. More for his sake, actually. I thank God I did. He is an amazing husband. Anyway, yes, this diagnosis plays head games - but I am also seeing the many lessons about life, human beingness, and spirituality that I probably wouldn't have gotten without going here.

I believe the purpose of life is a threefold lesson: To find love even when it's evidence is in something as subtle as a kitten's purr. To remain in faith that we are living out a plan far greater than we can put a finger on. And to trust that hope brings forth miracles delivered by the brilliant angels that surround us.

We learn our lessons, and we are instruments for other's to learn their lessons.

Okay. And it's not even Sunday!

Gina "
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Reply #2 - 03/28/10  6:00pm
" Beautifully put, Gina.

Forgive me for posting a long reply. Two years ago, after a 21-day asthma attack that would not respond to treatment, I was diagnosed with a shopping list of problems, the capper being a diagnosis of cardiomyopathy. My mother died of cardiomyopathy so to be told that out of blue, I too had that disease--I was devastated. I felt as if my life was over. I felt as if my body had betrayed me. I felt worthless and defective. Then to be told that I had CVID, another weird disease that nobody had ever heard of? I mean, it took me months to even figure out how to spell hypogammaglobulinemia! I (smile) The other day, I burst into tears and I found myself saying to a friend, "I can't trust my body to perform to spec." It's hard when you feel as if you can't trust your body anymore. I so understand what you are feeling.

For me, the healing came when I allowed myself to really feel the disappointment I had. About six months ago, my cardiologist saw my disappointment following some test results, and he literally sat me down and said "You're used to getting "A's," aren't you? This is not something that you are going to be able to do perfectly. It's okay to fail; it just means you have a place from which to begin again. You are going to have to reframe what you think of as being acceptable."

Much as I hate to admit it, he is right. I do get to choose, every day, how I react to all of this. I cannot control what is happening to my body but I can control how I react to it. For me, though, I had to acknowledge that it was okay to fail, feel the pain, and then let it go. And there are days when I have to do that many times...

I have my phone set so that it beeps at timed intervals. Every time I hear my phone beep, I ask myself "What am I choosing right now? Am I grateful for anything right now?" It gives me an opportunity to self-correct. If I am feeling bad, I simply acknowledge it and let it go. If I am feeling good, then I enjoy that feeling, and I let that go, too.

You know, I see you as a loving, caring, giving and strong woman, who has prevailed over many things. You really are a blessing, Princess.

Sending you lots of hugs,
Tina "
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Reply #3 - 03/28/10  6:26pm
" Wow! You guys are inspiring and have given me some really great tools to deal with these feelings! I'm used to getting A's too, Tina, and I think your cardiologist is really insightful. Thank you both for your input and encouragement! :) "
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Reply #4 - 04/23/10  9:04am
" WOW!! I was going to post something in response to the original post but after ready the two other responses I don't think I need to. Both of you described great ways to deal. I too feel that way all to frequently. Thanks for sharing wishing you all the best. "
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Reply #5 - 04/25/10  3:02pm
" You guys have really inspiring stories! The love of my life took me to Build-A-Bear and built me a bear that is half him and half me. Then he took the heart that goes inside the bear, kissed it, wished on it, and I take the bear with me every time I go. He can not always be there with me the entire time.

He is very open and willing to discuss how I feel about having CVID and we talked about things that are ok, and not ok to say to me when I am feeling down and he sticks to them. We always say "when I get better" not "if", we say that "every feeling is rational, and that if you didn't have a reason to feel that way you wouldn't", and he always tells me I'm beautiful, and he loves me no matter how awful I look or feel. Talking about what is ok to say, and what is not has really helped our relationship when I feel down, and helped him to better learn who I am as a person. I really recommend doing this with people you are closest too. "
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Reply #6 - 04/25/10  5:36pm
" I have enjoyed reading all of everyone's stories of self-esteem and inspiration. I too, like everyone else suffer. Only mine is quite different than yours with the disease. You people are dealing with chronic infections, asthma, fatigue, etc. and most of you have jobs, or have had jobs up until recently. I have been on SSI for the past 5-6 years. I have been on IVIG for that period. I am COMPLETELY HEALTHY, never get sick. (knock on wood). I am up moving and doing my art and gardening and socializing and what not. Most people do not know I am on SSI, because they would say "what the he&l", your healthy, you can work, etc., etc. I can not tell anybody about this, because they make immediate judgements. I went out to lunch with my sister and her friends, and they were all gripping about their jobs probably thinking what do you do Debby? I am so ASHAMED AND HUMILIATED. I lack any sort of self confidence to even think I could get some sort of a decent job that would supply me with health benefits. Like a county or government job. So being on SSI prevents from really getting to know decent people. EVERYBODY I take community classes with are retired and/or have husbands that are financially well off. So I really can't tell people about my personal set up. I mean I have a house that I live in provided by my mother, although I did take care of her sick brother for 5 years. God, now that was work. But it is humilating and extremely shameful. I feel like the biggest loser. Although I have worked while I did have cvids, I would get sick alot and it was very hard. Anyway. You people need to be EXTREMELY PROUD of yourselves for holding down jobs and fighting the infections. I honestly say, I probably couldn't do it. "
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Reply #7 - 04/25/10  7:58pm
" I don't get nearly as sick as a lot of people on here do. I just spent my life being the sick kid. It was always bronchitis, or pnemonia, I have had 5 reconstructive leg surgeries, some of which got infected. I always seemed to have a cold, or a skin rash, but nothing like most of the stories I have heard on here. The last few years I have had serious stomach issues, some of which lead me to poop myself in public, (once in front of the wonderful man I am with now) which was very embarassing. When I found out I had CVID I was relieved for them to finally find out what was wrong with me, but devastated to find out there was really nothing I could do about it. I called family and friends for support and it seemed like no one cared. I worked 4 jobs to put myself through college which I graduated with 2 degrees in 3 1/2 years, while being sick. I found out I have this disease, I was scared, 100's of miles away from my mother, and only 22.

I finally broke down to my boyfriend, family, and friends one night telling them that I wanted someone to act like it is a big deal. I told them I wanted someone to be scared, and stop telling me everything was going to be fine although it very well may be fine, it doesn't feel fine. I had my first transfusion the day I met my hemotologist because he told me I needed it right away. I called, and all people said was good luck. I did it alone.

Even now after finding out everything I have, no one calls when I have a transfusion, no one calls to see how I am doing after. The only person that takes it seriously is my boyfriend because he sees how everyone else treats me. It makes me feel like I am being RIDICULOUS about this even though I know that I am not. I'm confused about the disease, confused about my feelings toward it, and it doesn't help that no one acts like its a big deal.

*I'm sorry about the rant, this has just been a tough time* "
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Reply #8 - 04/25/10  8:47pm
" You have a perfect right to feel this way, you are right, nobody really does care, because their heads are stuck in their own worlds. They can't feel your pain and misery. I have had to drive myself to the emergency room at 2:00 a.m. in the morning with an appendix ready to blow, cuz I did not want to wake my husband up (first husband) cuz he was sick and tired of hearing me and my constant infections. Nobody really does care, but the people on this site do, because they can relate. You are lucky to have found an understanding compassionate man. I REALLY admire all you have accomplished under the circumstances. Yah for you. "
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Reply #9 - 04/25/10  10:20pm
" mcknightw, I can totally relate to what you say about no one even reacting or seeming to care about your diagnosis. I had the same experience. Most of my relatives didn't even bother to respond to the letter that my mom sent to tell them about it, and even the letters I've sent have met with either no response whatsoever, or a "Sounds like a good thing to me, at least you know what it is and it's treatable". While I appreciate the positive side of things, when you first find out that you have something this horrendous, it's shocking, and you need to have someone to commiserate with you. I'm so thankful for this group! They really helped me to calm down and feel understood. That first month was the hardest of all.

My boyfriend had the same kind of reaction as my relatives at first. He said that he understood me being angry that it wasn't diagnosed earlier, but thought that I shouldn't be scared about the disease itself, only relieved that it wasn't something worse and that it's treatable. His reaction made me angry, and it wasn't until he told his sister (who's an admin at a nearby hospital) what was wrong with me, and she looked it up in their database and they read together what I experience, that he started understanding my feelings better. He went to my first infusion with me, and my mom has gone to the other 3 with me. I know that I am very fortunate to have them in my lives!

Stimpy, you are a beacon of hope to me, and probably to the rest of us here who are still immersed in the sickness stage of CVID. Have you considered just telling people that you retired, or retired due to health reasons and leave it at that? They don't need to know the source of your income. Just a thought... "
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Reply #10 - 04/26/10  12:35am
" Princess, yes, your right, I should just state that, and most times I just do. But it is nice for people to know the truth about you, just so you can feel "real" and "accepted". I know they don't know the story of how I have come to this place in my life. Like being hospitalized and having to have to pay the cost out of pocket. I just have to have the medi/medi. So you are right. I won't feel bad. It's up and down. But I also want people to know they need to GIVE THE INFUSIONS AT LEAST A YEAR TO REALLY START TO FEEL A DIFFERENCE. I feel great and healthy now, but I have been on infusions regularly for the past 5 years. "

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