Tuesday, February 15, 2011

#33 - Good Days vs. Bad Days

This weekend, I had an incredible Saturday at my sister's house. The family gathered for a day of video gaming --- our bodies acted as the control since it was one of those new dancing games where you have to follow the dancer on the screen. We all enjoyed delicious Texas BBQ and a lot of laughs as we non-professional, out-of-shape "dancers" took our turn busting a move.

I took my turns and did my best, which was pretty pathetic, but I didn't care. It was a load of fun. My body is not always cooperative - no surprise since I am full of spare parts, but that didn't stop me from trying. I knew I'd probably pay dearly, but to dance with my 4-year old niece and to see my dad at about 65 years of age dancing better than everyone else was memorable fun.

However, my penalty began once we got home. I live just a few miles from my sister and once I got home I began itching terribly. The itching had begun earlier in the day, but I thought it was from my morning shower with a light irritating leg shave - the price of hairless-legged beauty - ha ha. I kept scratching and soon began itching all over my back and abdomen. With a bit of a shock, I discovered that I was having an allergic reaction. I'd worn capri knit pants to my sister's and didn't realize that I was still that allergic to cats - it had been about twenty years since I'd had a reaction. My sister had her cat put away, but the exposed part of my legs had been laying against areas the cat enjoys and BAM, I was steadily on my way to a full-fledged allergy attack. Of course, I increased my Hydrocortisone and my husband ran to the store to get a new bottle of Benedryl. Meanwhile, my itchy-dance had picked up pace.

Into the night I developed whelps all over my body, but the Benedryl thankfully kicked in and I fell into a fitful sleep. Waking around 5:00am Sunday morning, I did not have muscle aches, but I was wholly drained. I took my morning dose of HC and sat in the living room watching "Church," waiting for my meds to kick in. I could barely hold my head up. Leaning back in the recliner, I knew my body was struggling and figured it was because the allergy attack had zapped me. Throughout the day, I kept steadily taking more HC so I could at least walk to the bathroom and back without passing out. No matter how hard I tried to combat the overwhelming invisible weights pressing down upon me, I could not escape. My blood pressure kept plummeting. I struggled and took an extra safety precaution by setting out my injectable Solu-Cortef...just in case.

Later in the day, I realized that I probably needed Florinef since I had lost a lot of fluids the day before. My husband was looking all over for my prescription and I could not think clearly to give him direction assistance. My blood pressure had sunk so low that I was not able to even think straight. Finally, late in the day, when I was nearly ready to leave for the emergency room, I remembered where I had put the bottle. I cannot express how thankful I felt to have the medicine in my system. Within an hour, my head felt as if it were "ballooning" as my pressure steadily stabilized. Soon, I was able to walk around the house, do a load of laundry and disinfect my master bathroom. The difference was night and day.

Strangely, this was my first time to have a huge dip in my blood pressure and the inability to stabilize my condition through additional Hydrocortisone. Usually, that is enough. This time, it wasn't. I discussed this with my favorite physician yesterday and he commented that I probably am at a stage where I just need a bit more Florinef than before. I have been one of those patients who could NOT take the "recommended" dose of Florinef because it had once caused my internal pressures to increase so tremendously that even the blood vessels in my eyes burst and looked horrifying. For years, my body with Addison's required very little Florinef, except when dealing with the heat or when conducting activities that might cause dehydration faster than normal.

Regardless, I never cease to be amazed by the power of these little pills. Next time, before I begin dancing around and having too much fun, I'll take extra Florinef. Perhaps I'll retain fluid better. I had eaten a diet with extra sodium that day, but unlike before, this time it wasn't enough.

After this episode, I began thinking with sadness about all of the people who are currently suffering with this condition undiagnosed. On the other hand, treatment is still relatively new in history, so I contemplated the situation of people who had suffered with a nameless disease - having no choice other than to lay there as they became weaker and weaker, until the body gave out. Realizing the trial and error treatment of all of these patients before us...I feel so fortunate to have medicine that works like a helium tank --- filling my body with an uplifting boost, pulling me up, up and up!

Learning new lessons with Addison's never ends. Just when you think you have it figured out on a decent level, then you find that you are side-swiped with a new scenario that brings a new lesson. Needless to say, I have new prescriptions for Florinef and will have a back-up bottle ready as a precaution. My husband also now knows where the Florinef is kept and the importance of having it on hand just as we have Hydrocortisone ready during a crisis.

The great news is that having Addison's doesn't have to only mean having bad days, it can mean having a terribly bad day, but the following day can be incredible. I guess the unpredictability of the disease can be most disturbing, but I am always grateful for a good day. Today is a really good day, and I am looking forward to enjoying plenty more.

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