Today's Slogan & Life Update

"Don't worry, Taryn takes care."

That's pretty accurate - I'd say I require a lot of care!

What's new lately? Let's see. I seem to have horrible reactions to every new medication I take. The latest was Sulfazine. I developed a mild, unconfirmed case (confirmation would require a biopsy) of .Stevens-Johnson Syndrome. I'm very thankful I didn't get a severe case! (In severe cases your skin can slough off like you've had thermal burns and it can be fatal.) Yuck! As though I need another brush with death - no thanks! Despite the lack of a biopsy, my rheumatologist said I should consider myself allergic to Sulfa drugs. Great!

So, having already experienced nasty side effects with Imuran, that means I now have to try Methotrexate. It's the only one left. (I'm already on Mercaptopurine but can only take 50 mg or else my liver levels start to rise. I certainly don't need liver problems in addition to everything else!) I dread starting Methotrexate! Despite taking Zofran, an anti-nausea medication, twice a day, I still have trouble with nausea on and off. And in my mind Methotrexate = nausea/puking! Both my mother-in-law & sister-in-law are on this medication.

I'm waiting on the results of my CBC, ANA, and cortisol levels to find out if I have adrenal exhaustion. That might be the answer to why I have narcolepsy/hypersomnia - since we know I don't truly have narcolepsy! After reading the detailed symptoms list, I was like, "YES - THIS SOUNDS LIKE ME!" (I also think I have Wilsons Sydrome (low temperature) which can often go along with this.) I would love to have an answer and then hopefully a solution! However, my neurologist still wants me to do another sleep study to see if gaining weight (from the stupid steroids) is causing apnea, making me more tired. I only have to do the polysomnagram (night study), not the MLST (daytime nap study). However, it's still a pain!! I'm not looking forward to it at all!!

That's enough for today. I need to balance the checkbook and pay some bills before my headache gets any worse.

Take care and enjoy your health!

Quick Update

For those of you that don't know, on October 8th I had emergency surgery because my small intestine was obstructed. They removed 18 cm of it. Upon biopsy they discovered that I have Crohn's disease. If they hadn't done the surgery, most likely my small intestine would have perforated; I would have become septic and probably died. In fact, this is probably what happened to my mom's cousin, Karen, when she passed away in 2003. It's bizare when I think how alike Karen and I probably were.

A bit more of the story is that I went to the ER on Sept. 20th for horrible stomach pain. Ben was at work, Grammy was at the dentist, and Gumby didn't answer the phone, so I called an ambulance. The ER took x-rays of my abdomen and did a CAT scan with & without contrast. (You have to drink a massive amount of contrast fluid and then wait an hour before they can do the CAT scan. It took me a couple hours just to drink the contrast without throwing it up.) All they found was a UTI. They sent me home with an antibiotic.

On Oct 4th I had more pain so the doctor called me in some Zofran & Nexium. Then Friday afternoon, Oct. 6th, I had the horrible stomach pain again. Only this time the anti-nausea medicine didn't work. After puking my guts out all night, I couldn't take it anymore. Although Ben was home I called an ambulance. There was no way I was going to sit around the ER waiting room! Once again they wanted me to drink the contrast fluid and do the CAT scan. I was convinced they weren't going to find anything, after all I had just had the test 2 weeks before! It seemed pointless and I didn't think there was any way I could drink the contrast without throwing up. Plus I was in more pain - the Morphine they gave me on this visit didn't work near as well as the Demerol I had gotten the last time. The doctor half agreed with me about the test - he didn't really think it would show anything either. It's scary to think how close I came to not having the CAT scan - how close I came to dying.

Anyway, they offered to put a lovely tube down my nose so that I wouldn't have to drink the contrast. [Does it seem strange to anyone else that to get to your stomach they put a tube through your nose, but to get to your lungs they put a tube through your mouth?] I guess the Morphine was helping some because I agreed to the tube even though I knew it would hurt. (I had a pediatric tube down my nose in 2000 when they did my sleep study. It hurt and that tube was way smaller!) So they put the tube in, poured in the contrast solution, and somehow I managed to keep it down for an hour. I'll tell you, drinking the contrast down is much better than having the contrast come back up. Yes, after one hour I puked up all the contrast. Luckily, that didn't compromise the CAT scan. So I have the test and, lo and behold, it showed an obstruction. They decided to keep me overnight - much to my chagrin with the tube in (I made them remove it after they finished loading me up with contrast) to suck everything out of my stomach.

They implied that surgery would probably be necesary but wanted to monitor me overnight first. I'm not quite sure how they thought this would help. I mean, there was nothing left in my stomach to suck out. I doubt they thought the obstruction would magically resolve. My only guess is that, as it was getting rather late on a Saturday evening, they preferred to wait to do the surgery until the following day. Oh, and of course they left time for some morning golf, since the surgery wasn't till noon. I actually liked my surgeon just fine but I can't honestly think of another reason for waiting.

I think I will save my rants about ng tubes and the rest of the hospital visit for another blog. I have included enough info to basically get everyone up to speed.