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.
Hey there! So a lot of excitement is happening in my life. I went downhill and had a bronch done 2 days ago. Then went downhill again and have not been able to oxygenate and found out I have a very severe pneumonia. I was supposed to be admitted tonight, but life happened and nobody could feed my pet. So tomorrow I will either be going back for admission, or starting an IV antibiotic regimen, and a ton of extra breathing therapies at home. For now I am on 3 high dose oral antibiotics. Though I have the desire to bust out some ridiculous sarcasm to cope with the stress of the past week, this isn't a time that it would be appropriate. My lung function is scary.
With that said, I see a lot of you struggling right now. A lot of new members going through the frustrations of starting treatment, figuring things out, and still feeling sick. A lot of you that have been on treatment, but are having a hard time with health, and juggling life. It is a pleasure going through this journey with all of you, and I hope as time passes that you will all find that you are experts with CVID, and can balance life with disease just being in the background, and not all consuming. I am not entirely sure what my heart is calling me to say right now, but I have really been thinking about this group! It can be a tough time of year for us. Nothing can be said to take any current hurt away. But in reading recent posts, it has allowed me to step back and see past my own difficulty, and draw strength from the people around me. Sending a lot of love and light to you guys! You are all amazing, and I love being part of this family! If I read this post tomorrow and find out that it was way too cheesy, I'm blaming all the drugs in my system!!
Hugs!
With that said, I see a lot of you struggling right now. A lot of new members going through the frustrations of starting treatment, figuring things out, and still feeling sick. A lot of you that have been on treatment, but are having a hard time with health, and juggling life. It is a pleasure going through this journey with all of you, and I hope as time passes that you will all find that you are experts with CVID, and can balance life with disease just being in the background, and not all consuming. I am not entirely sure what my heart is calling me to say right now, but I have really been thinking about this group! It can be a tough time of year for us. Nothing can be said to take any current hurt away. But in reading recent posts, it has allowed me to step back and see past my own difficulty, and draw strength from the people around me. Sending a lot of love and light to you guys! You are all amazing, and I love being part of this family! If I read this post tomorrow and find out that it was way too cheesy, I'm blaming all the drugs in my system!!
Hugs!
You are a fighter...all the time, every day. You just keep on the front lines of CVID battling without ever taking a break.
You have a big heart, and never seem to lose heart.
You are one fierce woman!
It is an honor to get to know you,
You do your best to follow Dr's orders and get healthy, fighter girl.
LuLu :)
My heart is for you as are my prayers. Sometimes the approximacy to our own immortality pulls up the words we long to express but seldom find the courage too. That is the gift in the challenge.
It is the suffering that pulls the compassion out of us as well as toward us. Though the experience is more than difficult look for the lessons in it. Otherwise for me anyhow nothing else makes sense.
Glider the other day I used you as a example to my 18 year old daughter who is miserable at the moment. I just simply told her there is this young girl who is sick and struggles and you can not imagine what she can accomplish in a day and still remain sweet.
Im twice your age and totally look up to you. I wish I had the strength, wisdom and courage you do. Im impressed with you all the time. You make a difference in our lives. Your words and everything that goes with them makes a difference in mine.
So Thank You :) Lots of hugs and what you wrote is so encouraging to me!! ........Mountains PS kick butt and get well please. Prayers for you coming your way!
your post was the last thing I was reading before I went to bed last night. I had thought that I was having a horrible two days and life couldn't get worse. I was having a real poor pitiful me day. your post was like a shining light from a light house bringing me home from a dark and rocky sea. thank you for sharing your story. it gives me inspiration to give myself a good kick in the butt and keep moving forward. I'm praying that the medicine will work and you get to Colorado soon. I am sorry you are so sick and facing so much right now. you are a strong women. please keep us updated on your progress as we all worry about you! if there is anything I can do to help you, please let me know.
blessings and hugs my friend
deb
I'm so sorry! I had been thinking about you and wondering how you were. I am praying for you. You inspire me because you never seem to let this illness get the best of you. That's something I'm learning from, so thank you. :) I wish I lived closer so I could feed you pet for you! Let us know how things go at National Jewish. They must be good, because my doctor wants to send me there too. I've not scheduled the trip due to financial reasons. I'm praying that you feel much better soon.
Hugs,
Ashlee
sending prayers and happy thoughts your way
please keep us updated
hugs
den
Keep up your strength...we're all here cheering you on!
You are one amazing young woman, and you are doing great
LuLu
Hope you are feeling better and better.
I hope you requested the room with a beautiful view..the bed with 4,000 count thread linen, a great breakfast bar, and ordered some spa time....
Seriously, my prayers are with you. I hope you have someone to be there with you and to help with your dog. You are so young to be going through all of this..
Lots of Prayers and Hugs
Cheryl
Please keep us posted!
Shoshi