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.
Guess this is it - I have to modify my life.
Entering week four of sickness - chest infection that won't go, sinus infection that has joined the party...probably some sort of gastritis issue to boot. I finished 10 days of antibiotics a week ago, a sinus infection chiming in the day before I finished. Home sick today - chest plugged, sinuses plugged, joints flaring...so tired after sleeping 10 hours. The assumed gastritis issue comes after going to emerg yesterday thinking I had a kidney infection - back pain, pain under the ribs. Nothing on bloodwork or urinalysis.
Mistake 1 - trying to keep working through it.
Mistake 2 - not going in to see a doc fast enough (stems from doing so before and being told no antibiotics)
Mistake 3 - possibly not being on antibiotics long enough
Mistake 4 - working on that, waiting for immuno nurse to call back - I don't think my IgGs are high enough, 900 is not keeping me healthy
So anyway, I have an active job - maybe that needs to change...this is so getting old. Time to make some life changes I guess. Trying to keep my head above water & not go to that depressed place.
Entering week four of sickness - chest infection that won't go, sinus infection that has joined the party...probably some sort of gastritis issue to boot. I finished 10 days of antibiotics a week ago, a sinus infection chiming in the day before I finished. Home sick today - chest plugged, sinuses plugged, joints flaring...so tired after sleeping 10 hours. The assumed gastritis issue comes after going to emerg yesterday thinking I had a kidney infection - back pain, pain under the ribs. Nothing on bloodwork or urinalysis.
Mistake 1 - trying to keep working through it.
Mistake 2 - not going in to see a doc fast enough (stems from doing so before and being told no antibiotics)
Mistake 3 - possibly not being on antibiotics long enough
Mistake 4 - working on that, waiting for immuno nurse to call back - I don't think my IgGs are high enough, 900 is not keeping me healthy
So anyway, I have an active job - maybe that needs to change...this is so getting old. Time to make some life changes I guess. Trying to keep my head above water & not go to that depressed place.
We as humans are so resistant to change, but as a CVIDer you are a fighter as many here are, and have fought hard to not let this disease take over your life.
It is quite clear that you are a person who happens to have CVID and not CViD who happens to embody a person.
I look at your list of mistakes and see self blame...none of what is happening to you is your fault...it's just the way the CVID is flaring up...you did nothing wrong.
I'm wondering if small changes would be enough to keep you healthy but also allow you to maintain a good portion of your current job and activities you enjoy?
Working part time instead of full time, making time for a nap in the afternoon, etc...mix in some self care with the things that keep you active and happy.
I really hope you can see that this turn of events is in no way your fault...and as far as not going to that depressed place, well of course you don't want to live there or anything, but a day watching movies and eating a few pints of Ben and Jerry's (it's the CVID emergency set back kit) is certainly called for.
Go easy on yourself...
Anna
hugs and blessings
deb
I understand about waiting too long to go to the doctor. I was just diagnosed with CVID last year and before that, I would wait as long as I could before I went to the doctor. I never understood until my diagnosis why I was always so ill and I thought I just needed to suck it up and it would go away. It never does, but I feel like I still have that mentality even now and I'm working on that.
My IgG is 913 and I'm not sure it is high enough for me either. It is a huge improvement over the 420 it was before I started treatment. My immuno wanted mine at 1000, but he thought 913 was close enough, so he didn't increase my dose. He said he may have to try to get it to 1200 if I continue to get sick. I guess we will see.
I hope you feel better soon and that your immuno helps you find a solution. Keep us posted!
Love and hugs,
Ashlee
Could be you need a dose adjustment... Don't be afraid to ask your doctor about this. We are all only human and this is why the forum is here to help encourage on another and to get info from others..
First off I don't think it's uncommon when we do get sick for us to get 3-4 doses of antibiotics to get rid of our infection..
Second, when we do get sick it is important to get ourself to the doctor ASAP.. Don't wait around to see if it's just going to get better in a couple days, because we just don't have the "normal" antibodies that kick in to fight a common cold..
Third, be your best advocate..Have you ever heard the phrase the squeaky wheel gets the grease..Well it's true....
It's not uncommon to get depressed when we don't feel well. Turn on some happy music and open the curtains & windows to let fresh air in..Go for a short walk even though you feel awful..
So get some more antibiotics, and call your doctor and make sure you are doing ok..
Feel better..
Lots of hugs
Cheryl
I'm sorry to hear you have been sick. It does sound like you need more antibiotics. A dose adjustment also makes sense. My immuno shoots for greater then 1000. Everyone's magic number is different.
It is good to keep track of numbers, but in truth they are so individualized.
Some can be well on 900 or less and others need to be 1000 plus.
I hope you feel better soon.
XXO
Dianna
Lots of sickness around town at the moment - this is week 4 for me, he said it might take 6 to clear out. Ugh...so tired, so mucus-y...eww. Wait it out...
I am modifying my work/life balance - less active work, some desk work. I still need to keep doing something.
Thanks for the support - someone told me a few months ago I would have to make changes, that we often can't just keep doing what we like or have been...and that I wouldn't listen. Lol. Whoever you are, darn you, you were right...*sigh*
My doctor gave me a prescription that's always filled to take whenever I feel sick, hopefully you can get something right away next time.
Hopefully if your numbers adjust you will be able to keep up with your lifestyle rather than having to slow down!
Good luck!
Jen