medic alert tattoos

As per yesterday's wheat allergy post, really tired of phenergan for awhile. I've had 2 IV pushes in 2 weeks and the most common phrase associated with that drug for nasty side effects is 'corrupt the vein'. Same vein, same place, second person was young and impatient, it went in fast and hard and hurt like crap. I asked her to stop several times. Wonder how many patients she has 'corrupted' being impatient. We're talking necrosis and surgery to fix this kind of stuff when it's done wrong. (Bet you guys didn't know there is a whole branch of science about how intravenous meds affect veins.) So far everything is looking ok, but my whole arm ached for 24 hours. Not to complain too much because I know people who've been through far worse, but that same vein has been blown out during pre-surg prep, ripped open tearing out the IV on a handicap bar in a bathroom, ripped again Thursday getting the IV out, blood everywhere... I'm about ready to get a tattoo down my left arm that says DON'T USE THIS VEIN. There are a bunch of medical tattoos on pinterest, click this if you want to check it out.

nutrition is taken for granted

This post is a desperate attempt to rip myself away from twitter on my phone. I've been up since 2 a.m., thank you solumedrol, and now I need to pull all my focus into getting out my door in a couple hours for an appointment with a nutritionist, which cracks me up. Gonna be fun meal planning around nut/peanut (includes mangos bcuz in the pistachio family), all citrus (pervades all things that taste good, avoid 'natural flavors' that spike flavor in prepackaged foods including salad dressings, sauces, and condiments), the bananas-avocado-potatoes trio because of latex, and now wheat. Which I'm really not supposed to be eating anyway because I'm controlling my diabetes without meds, and wheat in everything spikes glucose as badly as sugar does. I'm looking forward to a very interesting meetup, and it had better be for $84, because insurance isn't paying for this one. I figure I need the moral support right now, though.

Since my parents didn't believe in doctors and I was so terribly aspie (failing to communicate well) through most of my adulthood, it took a really long time for me and my medical team to figure out I'd been living with food reaction induced asthma for several years. I lived on cough drops for a decade before I got an inhaler, and then lived on advair for 9 months before it dawned on anyone I might be having deeper issues. When I finally found out I'm diabetic and changed my diet, a lot of that went away because I was severely curbing the carbs, and I discovered a carb rich diet was also causing other problems like IBS and bad headaches. Lost 50 pounds and started feeling a whole lot better.

Then the airway problems ramped up. Cashews were first, and it was nasty. I'd been eating cashews for years, so that was a big surprise. I was already suspicious of peanuts and had stopped eating anything with peanut butter because I was tired of the itching, but that blew up along with the cashews, and now I can't even touch something else that has touched something with peanut in it without itching and actual swelling. I purged my house. Then came the lemon. I'd already cut out orange juice for severe heartburn and limeades because my mouth went numby and tickly, but I love everything lemon. When that finally scared me with airway, I was almost devastated to give up lemon juice sqeezed on crabcakes and the rare piece of lemon pie, my fave dessert in the whole world. It's terribly difficult to purge citrus. Lemon isn't legally bound to be listed as an allergen and can get away hiding in ingredient lists in the form of 'natural flavor' in everything from salad dressings to condiments and sauces. I started making my own salad dressing. I was thrilled to find Annie's condiments and dressings, I can finally eat ketchup again without a reaction. Click this pic to go the to Annie's site. It's my way of saying thank you to them for helping me enjoy eating with all this going on.



So. Now it's wheat. This is my second round of steroids in 2 weeks and I got the rash this time along with the itchy tongue and croup. My allergist told me last year to take 2 zyrtecs twice a day and eat anything I want, and if I have a reaction then throw in some pepcid and claritin, crank benadryl round the clock for a couple days, and if I decide I can't live with the reactions, go in for steroids. Well, besides no one being able to live on that much zyrtec (my regular doctor pulled me off it after 3 weeks because I was such a zombie he was afraid I'd have a traffic accident), it's actually kind of dangerous to just keep putting your body through continual autoimmune reactions. And dumb. And sucky. Very, very sucky. No food on this planet is worth the suck I've gone through.

Let's put this into perspective, for those of you without food allergies. I can't walk into a bar without risking my life thanx to nuts and citrus. I can't eat anything out of a deli, fast food, or restaurants because of cross contamination with allergens. (Believe me, I've tried.) I can't enjoy other people's homemade goodies or potlucks no matter how diligently they try to cook for me because they don't realize how cross contaminated with allergens their kitchens already are. I check every single package before I handle what's inside or eat any of it. I'm braced for a reaction 24/7 everywhere I go because people naturally eat candies and foods and touch everything without washing it off their hands. And NOW I'm facing no birthday cake or nibbling on holiday goodies. Not even an oreo, which is peanut-free if I stick to the regular Double Stuf.

I hope you guys appreciate how much I really don't whine about this. And I hope I never ever EVER become allergic to chocolate and dairy because Hiland chocolate milk and packaged cheese is my go-to on the road.

Ok, those thoughts are organized and pushed out of the way now, time to wash my hair and get ready for the nutrition counseling.

If you got a terminal disease what would you do?

Originally posted 9-23-08.

We’re *all* terminal in the end.  I’m a ‘slow’ terminal.  I’ve already lost a niece who was born terminal but lived to 20, in spite of all medical odds.  So define terminal here.  I was diagnosed 20 years ago, I’m lucky I’m still alive, and I get up and face every day with progressing neurological deficit and severe pain througout my body.

So someone is asking, what would I do if I found out I’m terminal.  Well, if a doctor told YOU that you would be completely crippled and blind in less than 20 years if you were *lucky* and didn’t go into organ failure first, what would YOU do?  I went to college and got my degree.  I went on to grad school.  I raised a child as a single parent and then remarried and helped raise another child.  Every day I prayed that I would live long enough to see my children grown up.  Every day I did laundry, made meals, and somehow made it through my day.  Recently, just this last winter, I faced that I might die from liver involvement.  But here I am, I’m still doing laundry and making meals.  Slowly, with lots of rest.

What did I do?  I faced it and kept LIVING.  I didn’t ask ‘why me?’, because statistically, why not me?  Everybody’s got something, right?  I didn’t blame God, I didn’t hate my body, I didn’t go on big campaigns to fundraise for a cure for my disease.

What did Stephen Hawking do?  He helped flip the world of physics upside down.  And dang, he’s still alive, too.  Some of us just won’t die.

Being diagnosed with a terminal disease isn’t a license to feel sorry for yourself.  It’s not a ‘get out of responsibility’ card that says you are now free to smoke and drink and do whatever you want to your poor body.  It’s not a sign over your head that says you get to go to the front of the line for a free meal.  In fact, being diagnosed with a terminal disease is a sure bet that all your friends will fade away because they don’t know how to deal with it, and that you won’t be able to keep up with the fun stuff any more.  So you take a good long look at your life, you learn everything you can about medications and nutrition and how your body works, you have a long talk with God, and you get real with the people around you.

If anyone out there has recently been diagnosed with something scary, bless your heart, but take a deep breath and face it.  Have a good cry, have another good cry, and keep moving ahead.  Say the things you need to say to your friends and family, on a blog, whatever, and get that safety net around you.  Communicate with your medical team, talk to a counselor, and don’t be afraid to ask friends and family for favors, and tell them thank you.

Oddly, for those on the brink and about to step over (I’ve seen this a few times), some feel the need to reassure the ones they leave behind it’s ok, even though inside they are scared out of their wits.  They can walk up to the bridge with you, but you step out alone.  I think that’s what we fear most, unless we’re so sick that we’re glad it’s finally over.

Live your lives.  ‘Terminal’ doesn’t mean you’re done yet.

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