Patricia left a comment
Yes dear Lady it can be very lonely. I think it hard when folks see me the week after ivig. I look so normal it is like nothing is really warranting the isolation. They can not see the risk to our lives. It took a long time to teach those around me why I insist they wash their hands. I have two kids in school yet. Each day I risk exposure.
There is a gift to loneliness and that is to reach out as you have. I am here. Only one woman but with a heart of compassion. I have been recovering from surgery of a torn cartilage in my shoulder. Now having to go to P.T. I risk. Yet I ask if he has washed his hands and he is careful of it for. Last Friday I masked, it is so awkward to do so. Saturday was infusion day. I am stronger.
I too worked with kids, never gave birth yet adopted two. Almost dieing after both trips to Russia from becoming terribly ill.
Patricia Commiseration is good for the soul.
Patricia has left a new comment on your post "Inherited Common variable immunodeficiency (CVID)":
I'm a 58 year old woman diagnosed with CVID ten years ago. I am so
interested to read the reports from my fellow CVIDers--well named, "an
uncommon life."
I was an elementary special ed teacher who suffered for 18 years with
undiagnosed allergies and asthma literally since my first year of
college after getting pneumonia my senior year of high school. Got
sicker and sicker, than finally was diagnosed with asthma and drugged
appropriately and started allergy shots, which helped a lot. However,
that didn't stop the near-constant sinus infections, colds turning into
bronchitis, etc. that I would pick up at school from my students. I
would take loads of prednisone to get breathing again and get back to
work--and of course, prednisone impairs the immune system...
Finally, 12 years after my asthma diagnosis, in December of 2001, I got
sick (which I did roughly every month to six weeks), but this time I did
not get better. I couldn't pull out of the asthma attack and
sinus/lung infection regardless of the amount of antibiotics and massive
doses of prednisone and other meds I was taking. After trying to go
back to work by going one day a week, then two days a week, and so on, I
got to one week of working four days, and that was all--in March 2002 I
relapsed and was sicker than I had been the previous December. That
was my last week of work, ever. I had had my blood levels checked in
the mid-90's to find them low normal. This time, my doctor checked my
levels, and they confirmed the CVID.
I remember thinking, when I was first told about the IVIG, that that was
the cure--just a few IV treatments, and I would be good to go. It was
quite a punch in the gut when I realized that this condition is
incurable.
For five years, I did the IVIG once a month, then got on a trial for
subQ, which I've done now for five years, and I love it. I feel much,
much better--but I am also extremely isolated. I do not go out much,
don't travel at all. (Fifty miles to an acupuncture doctor is the
farthest I've gone in 30 years--and she is unhappy with me because I
have to cancel so often because of asthma flare-ups). I use a heavy
face mask from fall to spring during rare trips out in public during flu
season. I only eat in restaurants from spring to fall during off-times
(dinner at 4:30, anyone?) when no one else is in the restaurant. When
mosquitos are active, I must be very, very careful, as West Nile is in
my area. It would take a house fire or me or my family being carried
out in an ambulance to get me outside between dusk and dawn from May
through October!!!
I only have regular face-to-face contact with my husband and mother, (no
children--I was always too sick to even consider it) and they know
enough to stay clear if they feel ill at all. I lead a very, very
lonely life--but the tradeoff is that I am reasonably well (considering I
take 14 meds, not counting the subQ, on a regular basis for other
conditions). I have asthma flare ups often because of weather or pollen
(even staying indoors...), but I've not had a serious asthma attack in
six years, and have only had to use prednisone for a week or two a few
times in the last few years to get me through a bad flare up.
I've done this self-imposed exile from the world willingly after being
so sick for so long--but it is a very strange (uncommon?) life, very
isolated. I know that some people could not afford to do this--go on
disability and become a hermit. But it has been my salvation. An odd
life, an uncommon life, but finally, literally, since I was 18 years
old, a relatively healthy life. I'll take it. It's my only option!