This is a hard topic and I encourage you to keep going. I take the strenght from the people I know depends on me like my children and family even knowing that they don't fully understand how do I feel, but they wish the best. Sometimes they avoid the issue because it hurts them too. When I can't do something I just simply say I can't, if I they ask why then I will say something like I don't feel good or I'm tired. I try not to think of it a lot and I focus my toughts and energy on positive things. I don't allow my head to be thinking on the whys of the CVID. I read or play computer games when I'm down... I wish you feel better soon and try to focus on things that are happy or nice.

Thanks for your response! I think a big part of it has been structuring my schedule to make my therapies a priority so I am not so sick and things aren't so difficult. Setting aside 2 hours for treatments a day, and an entire afternoon every week for my infusion has been tough and I have allowed myself to slack on my compliance even with the realization that I am so much sicker...I just struggle with structuring my time and getting good sleep. Also, I do try to think about people that depend on me. I hear a lot of people do all it takes because they want to experience things with their kids, and be with their spouse. I am 20 so have to try to think ahead to being present for all the amazing things I want to be around for in my future. Right now I need to make it to college graduation and decrease my hospital time. Things have been scary, and when my health is at a low it eats me up and becomes harder to get back on track. I am totally venting right now!! So sorry! I appreciate your support:)

I totally understand you. You will overcome obstacles and get better. I also have a daughter with medical isues and it's been a roller coaster in my family!! So I do understand being young with health issues. Try to schedule your infusions as your health is first!!. We all get off track once in a while but we must get back on track for our future and people that love us!!

Take care and I'm sending you good vibes!!

Hi Glider,

You are so fierce and you have a "Take on the World" attitude-it is really quite inspirational.

It sucks that you got sick in your 20's, and that is all there is to it. Sometimes we just can not put a positive spin on something, and this is just one of those things in life where you get to stand in the middle of a crowded room and scream "THIS IS NOT FAIR" and it is true, and it would not be whiny or self pity.

As I have been getting to know you and reading your posts, you fight CVID every step of the way, refusing to let it interfere with your life-in the hospital one day, back in class the next!

You have such a fighting spirit, I am just in awe sometimes.

Maybe, instead of thinking of CVID as an enemy that you have to beat with a stick, try thinking of it as a younger sibling that you have legal custody of for some reason and you have to keep him on one of those ridiculous leashes some parents use in malls so their kids don't run away from them! First, having legal custody of a younger sibling is HARD work. You sure didn't ask for this, and you sure didn't expect this curve ball, but he's blood, and what else can you do, right?

For the sake of the story let's call the kid Petey. Yep Petey can be annoying and he always tries to run away from you-that's why you have that leash, so you can reign little Petey back in. He's an annoying little brother too because he whines and needs to make pit stops- always needing to use the restroom when you are trying to get other stuff done. You could accomplish so much more if Petey wasn't attached to you. Sometimes Petey really gets in your way when he throws a tantrum-screaming, rolling around on the floor, kicking his feet, and then when you try to take him away, he does that thing that little kids do- he goes completely limp, so you have to pull his leash really hard and drag him across the floor, and of course Petey damn well isn't going to give up, and now everyone is watching and knows just how much trouble Petey can be.

But at the end of the day, Petey is your little brother, and you have to take care of him, So you feed the brat dinner, play matchbox cars, let him splash around in the tub, let him jump on the bed a few times, read him 3 billion bedtime stories, tousle his hair and tell him you'll see him in the morning.

See, Petey is one hell of a pest, and you never asked for him to be left in your sole legal custody, but there he is. There he fucking well is (oops, language).

And, he is there every day. And he has needs. Sometimes he needs a pit stop. Other days he throw tantrums. Some days he is just a bitch to drag around, like a bag of lead weights. And, because Petey is unpredictable, sometimes other people notice Petey and offer to help or want to get the scoop on what's up with Petey and why do you have custody of Petey whether it is anyone's business or not. Sometimes you just tell people Petey is your business, and other times you vent to close friends.

But at the end of the day. he's still your brother, and you have to accept him for who he is. He'll be a part of your life forever. So when you get home at night, you give Petey some attention, feed him, play, make sure he has a little fun and gets some rest. After all Petey is just a kid and he needs those things too.

Hmm...OK, so my point. Kinda forgot where I was going, I guess Petey ran away with me!

Seriously Petey is a little like CVID. There are days when you fight like hell and there are times when you nurture the disease-you take care of it, you give it rest, you feed it healthy food, you give it a pit stop at the hospital if it needs it. You tell people, you get tired of talking CVID, that you want to talk about books and music and the very attractive back up singer in the band 'The Head and the Heart",who I might stalk and marry, but this is about you, not me.

Anyway, in a way you feed the beast, you take care of it and take care of you, so you can reach every one of your goals.

CVID and Petey will be in your life, but if you take good care of them, you can set them down a bit, so you can walk across the graduation stage and down the aisle , all by yourself.

Keep on Shining on-You are awesome!

Damn LuLu-ever think of writing as a career? Because as someone who has written, I was extremely impressed, & inspired, by everything you wrote.

But Glidergirl-I have one other birth defect that left me unable to have children....in fact, stole my uterus from me at 17 years old. I used to run an international support network for MRKH, until everything just got to me, and the CVID was taking over more of my life. Because of the CVID, the MRKH began to take a back seat. You know, which is more consuming on a daily basis? Being barren, which I have no control over at all, or being constantly sick and still seeking answers for those issues so I could keep teaching for as long as I could? My MRKH friends felt betrayed, but I got them into another program so I didn't leave them high & dry, you know?

My point is....my complications with the CVID made the MRKH besides the point anymore. I was never going to be a parent now anyway. I thought for a while that I could, if not control, at least contain the CVID. Wrong about that.

But I do get your issue-straight on. But it is also nice how LuLu put it. I would love to leave my Petey on the highway and drive off into the sunset. But obviously, can't.

Just know that we can relate.
Shoshi

Thanks Shoshi!
I can't have kids either, and I think what happens is you kind of have to put things in perspective...Don't look at what CVID inhibits you from doing, look at what you can do with CVID.

We know there could be a possible genetic factor- I would like to adopt high risk HIV kids..CVID taught me how to manipulate the healthcare system, and who better to care for a sick child with their own Petey Jr. than a CVIDer?

You clearly love animals...can you foster them after college when you have your own place? Or there is a huge need now for trainers, now that PTSD dogs are in high demand for our men and women coming home from Iraq and Afghanistan.

See Glider, you are 20 and you have a whole future ahead of you, but only if you take care of you right now and as needed. OK, so would the world stops spinning if you graduated a semester late? Well, it doesn't fit your life plan, but you will have graduated and done so in good health. I took the 6 year plan. Mom was SO proud!!! That was before CVID, so you know she was very proud of me.

Everyone here wants to see you reach everyone of your goals, but when you run yourself ragged it takes its toll. Do you have to think about CVID all the time?

Hell no!

There are way too many other cool things in this world to discover, like where the really attractive back up singer from the 'Head and the Heart "lives. I think Seattle, but this isn't about me.

We all wish we could control CVID and make it fit into our own Syllabus, but CVID does not play by the rules. It doesn't mean you can't squeeze every moment out of life, you just do it at a different pace.

Does it suck ? Of course it does! Do you still get to stand up on a table in the middle of the cafeteria and scream "It's not fair" and have it be true, and not whiny, or self pitying? Yes you do.

But glider you are one special person-and somehow that shows even through the computer. When I think of you, I do not think
Glider = CVID. I think Glider= Shining in the sky

Dunno if any of that makes sense to you.

http://www.youtube.com/watch?v=Yzpx8kc6PKQ

This is a little corny, but I do love Dolly- Some day I will make it to Dolllywood, with that "Special Someone"
*wink,wink*