darn

To me it feels like darned if I do, darned if I don’t. First off, I have to admit I think other people are crazy when they get too prissy about germs. Makes me nuts when people say they avoid family gatherings, shopping, public transportation, doc’s offices, etc. so they won’t catch some cooties. Yes, I feel a bit squeamish in a waiting room full of coughing or a TRAX train full of sneezers. I am most worried about mailboxes here, the front door box to get in with our magic fobs or the dumpster gate latch that virtually everyone and their nurses, friends, family and random workers touch. Just think of all the germy things a postal delivery person touches! Or how about the dumpster dumpers who go from facility to facility, filling up their garbage trucks? Each of us touches a zillion things that other people touch….or breathe the same air as countless folks from every sort of life situation. If you think about it all too much….we would all become paralyzed in fear. I try not to go down that road by washing my hands and trying to ignore reality 😛

Humans have lived this long amongst germs. I have the darned primary selective IgM deficiiency. “These patients have low IgM with recurrent infections that are often severe. There are variable antibody responses. Some patients are asymptomatic. This disease may be clinically similar to CVID though it should not be referred to by that name. It is important to note that IgM deficiency is also seen commonly in DOCK8 deficiency.” I have had way more than my fair share of strange things wrong with me!

sigmd

Wikipedia says…Isolated primary immunoglobulin M deficiency (or selective IgM immunodeficiency (SIgMD)) is a poorly defined dysgammaglobulinemia characterized by decreased levels of IgM while levels of other immunoglobulins are normal. The immunodeficiency has been associated with some clinical disorders including recurrent infections, atopy, Bloom’s syndrome, celiac disease, systemic lupus erythematosus and malignancy, but, surprisingly, SIgMD seems to also occur in asymptomatic individuals. High incidences of recurrent upper respiratory tract infections (77%), asthma (47%) and allergic rhinitis (36%) have also been reported. SIgMD seems to be a particularly rare antibody deficiency with a reported prevalence between 0.03% (general population) and 0.1% (hospitalized patients).

Sooo…..should I live in a bubble…..or just bull my way through life and hope for the best? I do the latter. And then I sometimes second guess myself. Like for going shopping yesterday. I got sicker and sicker as the evening went on. By the time I went to bed, I was feeling horrible. When I woke up this morning, I was back to intense misery. I went through 4 hours of nasty chills, creepy skin and wicked sore muscles. My lungs felt congested with crud. Then I got back in bed and slept for almost 2 hours. (And the RA came to check up on me while asleep) When I woke up, my body was on fire! I was glad that the chills were gone, but now my hair was dripping wet and my clothes were soaked. I opened the window all the way and pointed the fan at me going full blast.

For many hours now, I have been all hot and sweaty. I have used a whole box of tissues, and then some, this afternoon. I have coughed junk out of my lungs for hours. At least it no longer hurts so much to breathe! I keep mentally beating myself up. Was it stupid to go out yesterday? How else would I know how much I can endure unless I try? I cannot roll myself up in bubble wrap….can I? How can I make the best decisions? If I play it safe all the time, am I better off dead? How the heck am I supposed to figure out these answers?

cloudy

It has been rather nice with the window open 🙂 Officially 59 degrees….but it was probably over 60 downtown. With the rain and warm weather, all the tree buds have gotten much larger today 🙂 Sure is a gray day, though. What’s weird is that we are warm in the valley, but the mountains are getting lots of wind and snow and avalanches. So glad to have good air!!!!!! 🙂

improved-air

Hyper Helen came to my window. She has been avoiding me ever since she said I was going to die soon…..maybe in August? Tonight she said she was going to pray that I die tonight 😮 Well, when she left, I closed my blinds and visited the bathroom. For days now, it has been very difficult to wipe after peeing. I thought maybe it was from me flopping on the toilet in weakness and I just needed to position better. Tonight I could not get my hand past the toilet seat. That’s when I realized….my right groin area is hugely swollen. It did not hurt until I felt around to see if it was lymphs. Now it hurts quite a bit 😦 Simultaneously the area of my left chest where my port is and the lymphs in my left neck, swelled up and hurt. Maybe Hyper Helen is more right than she knows? I have been soaked in sweat for about 7 hours now. I prefer that to chills!

tec

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