Oh Stimpy, I'm so sorry for what you're going through! Is there someone in your life who can help you find a new place for infusions and help you with things around the house until you can get care again? Have you considered Sub-Q if you can't find a place for infusions? I've heard that the new Sub-Q drug Hizentra is really good and that it's easy to administer.

Oh my doctor called he's back in business, I guess the partners all split up so they had to do some weird like shutting down thing. So I have an appointment with him next week, hopefully I will get my infusion in at least the next two weeks. I don't know if that is the reason I am just feeling depleted. Do you think it has anything to do w ith it?

I think you still need to think about Sub-Q, I will never go to the hosp. for infusions again. Sub-Q is easy and done at home. I am switching to Hizentra too. However, because of the demand, the manuf. has a waiting list until they can produce more. Hopefully, I will change by Aug.

Forgot to mention that I believe your fatigue is due to the lack of infusion. Sleep...it is the best thing you can do right now.

Yay Stimpy!! I'm so glad that your doctor is around again! Congratulations!

Yes, I think that it's caused by the need for an infusion; I mean, just look at all of us who can barely go a few days after our normal infusion time without getting worn out. I'm supposed to have my infusion on Friday, but I postponed it for a week because I have family coming to town from out of state.

How can you PROVE that it is due to not having an infusion? I mean has the doctor told you this? I just want to know, because I am always blaming myself, I mean I keep thinking I need to CHANGE MY ATTITUDE. But even when I try to change my attitude to be positive and uplifting, it goes nowhere, then I blame myself. I even so much as ask God to change my outlook on life, and my fatigue stays the same so I feel so guilty. But as long as everybody is SURE it has to do with not getting the gammaglobulin I won't feel as bad. Do you understand what I mean?

Well, if you want to get technical, look at all of us, and then look at the IDF support group website...nearly everyone there talks about fatigue. That's anecdotal evidence, but then if you look at the official CVID websites you'll see that fatigue is listed as one of the top and most common symptoms. I believe also that the depression can contribute to the fatigue too, and the more down you feel about what you're not doing the more fatigued you'll be. It sounds like you're expending a lot of energy kicking yourself for your fatigue. I hope this doesn't sound harsh, because it's said out of compassion and caring.

If you mean that you don't know whether it's laziness for you personally, well I'd say you need to look at yourself more compassionately and give yourself a break. Look at all you've come through, and all that's going on with you, and give yourself credit for being alive and being well! I've said this before and I'll say it again, you are a beacon of hope to me and probably others here too. Cut yourself some slack.

Hugs :D

Thanks PB: God I sure needed that. No that was not too harsh. I guess I simply feel like the rest of some of the other people do, when people don't understand when you say "but I'm so tired", I had to leave my class early today because I just did not have any Umph! I have been home since 3:00 laying on the couch, I just cant help it. I guess I'm worried people are saying I am using CVIDS as an excuse. But now I know, it is "not all in my head". THANK YOU REALLY. Sorry about my complaining, I fighting the fatigue, ya know. Hugs back and GOD BLESS

You're more than welcome, I can relate to worrying what other people think, and I might need to read that myself in the future. ;)

Glad I could help :)

it sounds like a flare rest and take care it will pass i too think with infusion it will get better.... sending get well and feel better thoughts your way
gentle hugs to you pam

I am going to do an experiment, I go this tuesday to see doctor, i think maybe infusion also, but I am REALLY going to monitor the way i feel after the infusion, i mean energy level and compare it to the last 3 weeks. Gonna try and figure out if it really makes a big difference. fun . I know the answer is going to be yes though.

Funny, I'm kind of doing the same thing right now too. I was supposed to have my infusion Friday, and put it off a week to spend time with my family. I didn't think I'd have a problem because mine are normally every three weeks, so this just stretches it to four. I can't believe how exhausted I am already though! I think I'm scaring my family because I don't do much other than sit on the couch.

So sorry to hear that. But yeah, it DOES make a big difference even with a week. At least I have come to that conclusion. I too, have been laying on the couch all day. My body feels like lead. Hang in there, I know I'm looking forward to my next infusion. God what a contradiction! LOL. God bless

hug in there guys i know you can get through.....
thinking of you

Lead is definitely the word for this. I tried to pick my two-year-old niece up today and nearly dropped her! That scared me a lot. I feel bad that my mom has to wait on me, but I just tremble so much when I exert any energy that she won't let me do anything. That might be wise right now though. I wonder how long it will take to get my strength back? I'm supposed to start back to work on the fifth. Thanks for the encouragement, Pam. :)