Chronic Life: The Good and Bad

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You know how weeks can fly by…just routine or boring? But, there are times that seem to last forever when you really need a good ending. Last week could have been boring and routine, but it turned into one of the most horrible.

It all began late on Sunday with a phone call. One of our sweet grandchildren was in the hospital and our daughter and her husband had no more days off to stay home when the child was released. Thankfully, he was bouncing back quickly. The grandaddy and mimi team said we’ll be there soon.

We both made sure we were packing all of our medicines. My arms and legs were hideous with my psoriasis flaring. I had never had this before and it seemed surreal. We were still excited to travel and help out our family.

It hadn’t entered my brain-fogged mind that I was heading for trouble. I had just started taking the week 2 Otezla pills. Now I was at the full strength that the doctor had prescribed and had been warned of the side-effects. Nothing had happened, so I really just didn’t think about it.

It was wonderful arriving to see everyone, even if there was still some worry. It was what I dreamed about…being a doting grandparent. I felt blessed to have such a great family. On our third day, the rash was getting worse and then I got very sick that evening.

Running to the bathroom, I landed on my big toe. I later saw that it was bleeding and the nail was almost torn off. I stayed nauseated all night and the itching really intensified. Over the next day, I stayed weak and nauseated. I sipped on Gatorade and chicken broth. There was no sleeping that night and the next was worse.

Itching is an awful thing, but this went much further. When I finally got a mirror I could see that my back was swollen and covered in large areas of hives. I kept putting on my steroid cream, but it seemed to be a lot worse. I tried backrubs and ice packs, but still the hives were getting worse.

Next morning we decided to head home and try to get me some help. My insurance only works in our home state, unless there’s an emergency. I should have gone to the ER, but just wanted to get home. Friday was the worst physically. ever.

I took all the Benadryl that was allowed and forced myself not to scratch. My rash was angry and red. I tried rubbing my back on the car seat. I was in pure misery! The 12 hour drive created more inflammation as the hives grew in size and color. When we reached the last hour until home, I let myself scratch. That didn’t even help and I ended up slapping my legs.

I felt a little out of control, emotionally. I was praying for help and wondered if we should stop at every hospital sign that I saw. We got home and I headed for a luke-warm shower. I stayed away from the soap and just put on the softest pj’s I could find.

That night was horrible and I could see in the mirrors that this was no longer safe. At 3:30 am we headed to the ER. At least the hometown hospital had most of my medical records. I couldn’t wait for some help and thought that they would give me at least one IV bag. Instead I received a strong Benadryl injection and was given 60 mg of Prednisone to swallow. With my very dry throat, the third pill started to go down but came back up.

I swallowed a new one and the nurse said to rest while it was working. The shot felt strange, as if my arm was getting tight and fat. It didn’t take long before I was dozing. When I woke the doctor said that he was getting me a 5-day prednisone dose pack. I was thinking that I just wanted them to give me IV’s so that I could leave there feeling better.

I was still itching like crazy, but slept for a long stretch and I woke up feeling emotionally stable. It wasn’t a very good Father’s Day celebration, but I think Hubby was just glad to get a little sleep. Today was remarkably better and I visited my GP.

He was helpful and gave good ideas to hopefully make some changes. I don’t want to become one of those people who are allergic to the world. I’m not there yet, of course. This experience has been scary and overwhelming.

It’s frightening when you feel like you could die. This is my worst-ever reaction and I’ve had some doozies! During times when my body is failing me, I may become a terrible patient. During the worst of it, I was thinking about dying. I hope I don’t die having a torturous flare.

Reacting to a drug like this isn’t something to mess around with. I should have gone to an ER days sooner. If you don’t take care of yourself, it’s stupid. This is an area I should work on. Psoriasis – Guttate type is an unbelievably itchy nightmare. I never knew what it would feel like.

The sores are starting to shrink and my doses of Benadryl are getting farther apart, but I’m worried about the future. Because psoriasis is an autoimmune condition, I now have two of those rotten diseases. They are hard to fight and the drugs are horrible.

But, for today, I’m truly thankful to be making progress.

@2023 copyright, Lisa Ehrman

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