And Then Came Shingles…

About 3 weeks ago I started having some strange sensations on my head and face. It felt like someone was running a meat tenderizer on my scalp and stabbing my forehead with an ice pick. Initially I thought it was a crazy migraine. Stranger things have happened to me, and I just thought this was another cruel spell being cast by the migraine wizard. But, two days later I developed a rash on my forehead, so then I assumed this was a wacky form of psoriasis. A super painful form of psoriasis I had never experienced before. Again, not very alarmed, and not even planning to head to the doctor. Just doused my scalp and rash patches with clobetosol and off I went. Another day in the glorious life… after all, I have a 4 year old to chase after;)

Two days later, while J was at preschool the pain was getting seriously intense. I had taken Aleve, but it wasn’t touching the fire and ice storm on my face. Then, in the back of my head my rheumatologist’s voice started echoing. If you ever feel icky, go see your primary. You need to be careful while on a biologic. Ahem, let the panic set in. I realized I’d been ignoring my body and probably some kind of bug for almost a week. I logged into my doctor’s schedule, snagged an appointment with my primary and headed in.

I told him all the things I thought were wrong with me, migraine, psoriasis, ear infection? He listened patiently, as usual, and then told me that he didn’t think this was any of those things, and that I had shingles. Cue a major panic attack, right in front of my doctor. It wasn’t pretty, but this was my first illness since starting Humira, and the FDA has properly scared me senseless that I will die if I get sick while taking it. You can’t order your meds, watch TV, or look at a magazine without being reminded of the risk you are taking with your treatment.

Luckily I have a very level headed doctor who calmed me down and got me going on treatment and to see a ophthalmologist right away. I luckily did not end up with shingles in my eye, only scalp, forehead, and eyebrow. It has taken a long time to heal given the immune suppression, but I should be able to start back on my Humira just after Thanksgiving. And I am counting down the days. Even with the concerns of illness while taking a biologic, it gives me the ability to live a mostly normal life, so the risk is worth the reward in my book. Everything from walking farther than a block, having the energy to play with my son, staying awake past 7:00pm, and being able to open his apple juice are all possible because of Humira.

So, on goes the roller coaster of chronic illness… This one was a ride I hope I never experience again;) For a few days during this I definitely did not feel chronically well at all. It took a lot of extra effort of journaling, gratitude lists, meditation and prayer to get back to a level head. And tons of support from my husband, family and friends. Oh, and a freezer full of food that I always have on hand. I can’t wait to share with you how I make this happen and how many times it has saved me! When your health is compromised it rocks your foundation, especially when you are 38 and have a young family! The realization that this is not the last complication I will experience is daunting, but one day at a time is my motto. Today is a good day, and I will enjoy it.

Take good care,

Kristin

My First Holiday Season with 3 Chronic Illnesses…

This year looks like it will be a little different in our house for the holidays, given how my health has changed. Typically, I would start at the beginning of October decorating the house inside and out like a department store (all in one day and night), baking, preparing J’s costume, buying candy and teal pumpkin treats. Then, plow full force into Thanksgiving, J’s birthday party, Christmas, and new years.  For the last few years this has left me exhausted, 5 pounds heavier, and wondering what am I trying to prove!?!?

Well, this year I am planning on trying some new techniques to hopefully celebrate fully, without draining myself so much that I cannot enjoy or participate in the festivities.

When I was first diagnosed with Psoriasis and Psoriatic Arthritis, a part of my life suddenly made so much sense to me. For the past few years, I have had a to do list that just couldn’t get done. For example, I would set out to clean up the garage all in one day, because that was my style. And guess what, I would end up in bed unable to function for about 24 hours the day after, and the project would only be minimally finished. It was a frustrating pattern that I could not figure out until I learned what was going on inside my body. I realized that with this new normal, my new abilities were not going to live up to my old expectations.  My energy had to be carefully expended on what mattered most.

Insert expectation revelation. I was not going to let these diseases steal my quality of life, or my productivity. Instead I was going to figure out a way to thrive and figure and get things done and not push myself overboard in the process. I decided to try breaking all of my projects into smaller tasks and work on them over time. And, over the course of this year, it has totally worked!

One of the first projects we chose to tackle was the garage. We organized and cleaned, section by section, so that by the holidays everything would have a place, and all of our decorations would be easily accessible. Instead of taking one weekend to do this, it took 6 months. Whoa.  I know, catch your breath and stop laughing. But, it’s done, and it has made life a lot easier.  And I didn’t end up in bed once from making myself cra-cra over a self-imposed deadline.

I decided that I would also apply this method to my holiday season this year to see if it helps…

I started October 1st by decorating over a whole week, and editing my decorations as I went. Whatever I did not love or want anymore, I simply donated, recycled, or threw away. I usually have my front porch decorated like a Pottery Barn catalogue covered in pumpkins of all shapes and colors, and pre-lit twig pumpkins. This year I hung my wreath on the door, used a few glittered pumpkins in lanterns, put out the pre-lit pumpkins, and let J pick a pumpkin for each of us at the pumpkin patch. I think it turned out balanced, and festive for the whole fall season! Not just Halloween. Score one for me in the energy saving/effort department. Now I’m done until after Thanksgiving!!!!! Excuse me while I do a little dance;) ***The only thing I didn’t’ like about this method was that the decoration bins stayed out in plain view longer that I’d like. I’m thinking of putting things away in bins labeled by room so that next year I can do one room at a time.

I’m hoping to spend this first chronically well holiday season featuring my attempt to make the holidays happy and bright without killing myself. I plan to use my slow cooker a lot, my freezer just as much, and part with old expectations. Let’s see how it goes!

Do you have any holiday tips that have worked for you while managing chronic illness?

Stay well,

Kristin