Aargh!

Halloween In Michigan

Made it to Michigan.  The people here are sooooo nice!  I'm waiting between updates on the system to do my part and check data.  This will be a fairly long couple of days while my boss pulls in and converts data and I validate and test the data and then we balance to the client's old data.  I admire my boss because she does this time and time again, and has to write custom programs to pull data from a different system and make it make sense in our system.  The IT guys from the old system and the local IT dude (who is very very good) have been up working on this most of the night.  Now it is our turn!

I have two new epipens and some emergency prednisone, which I am to take at the first sign of more hives.  Dr. Calm told me to quit taking the higher dose of cyclosporine because my blood levels were too high.  I told him I didn't think it was quite doing the job and if I had a high blood level you would think it would have done better.  He is pretty sure that the severe stomach pain I had with this episode is just another part of systemic mastocytosis.  He said he might test me for hereditary angioedema  which the ER doc suggested, but my C4 levels were normal and they generally are high with that disease.

Dr. Calm also said we could test for "beef allergy" since basically the only food I had that day was a small hamburger (at a "safe" restaurant I had eaten at before) and I didn't even eat all of that.  He said if you have a beef allergy the allergic reaction might take a few hours to show up.   I don't eat a lot of beef (I have difficulty digesting protein because of The Belly) but it is something I eat consistently each week.  From an article I found ("The Baffling Bite of Beef Allergy" allergicliving.com) apparently I live in one of the few areas in the United States where a specific tick lives, and bites from that tick can trigger an immune response to beef.  Ewwww - tick bites!!  Ewww - ticks!  If this was the cause of my hiving problems I will be happy but grossed out.

I bought some food at the grocery store here to eat because I am going to have to be very careful about eating out.  I will faithfully take my epipens with me where ever I go.  I already can't eat seafood or fish, to the point that if I eat something that was cross contaminated with fish/shellfish protein I get very bad hives.  Pork is almost impossible to digest, and nuts don't digest at all.  Beef is the last protein I have to eat, and I am praying I am not allergic to it.

I am covered with red hives and I am so tired I can't hardly go.  I feel very sick, but I'm glad I was able to get to Michigan!  I at least have that much command over my body - a small triumph but a triumph none the less. I am sure my team could have converted without me here (I have no allusions of indespensability) but it would have been harder on them, PLUS the clients were expecting me to help with the billing and collections piece of the install.  They are such nice folks I didn't want to disappoint. I am just aggravated about my body not behaving at the last minute like that - not sure what I can do about it.  I am running out of things that actually work!  I have an appointment with Dr. Calm when I get back to Missouri, so maybe I can get some answers after more testing.

Will be working tomorrow on Halloween.  I didn't bring a pirate costume, though I wish I had because I like to say "Aargh me matey" but I do have a cute sparkley pumpkin shirt to wear.  I have great hopes I will be able to help get the client started entering visits in our system as the data I have been checking off and on while I type this has all been perfect.  My boss does a fantastic job with a really hard task!!

By the way, they said "hoot" a lot here, like "don't give a hoot",  which is almost as good as saying "Aargh me matey".   They said this area is known as the thumb of Michigan. The weather is clear but nippy.  It is beautiful here and the motel we are staying at is a "hoot" too!