Call Me Sandbag

If you would have asked me seven or eight years ago what I knew about psoriatic arthritis, I was in the throes of nursing school so I could have rattled off a pretty good text book description.  It’s a degenerative autoimmune disease that effects joints as well as has skin involvement blah, blah, blah. It’s a definition I memorized for a test and not something I ever thought would be come part of my daily lexicon. That all changed five years ago.

I had just given birth to my sixth baby. (Yes, sixth. See previous post about how I’m a nutter who loves surrounding myself with people to take care of.) I also ended up having my gallbladder removed a few weeks later. After that I started noticing that I was TIRED all the time. I mean, I did have six kids and was working nights as a nurse. Of course I was tired. Then my hair started falling out. Um….maybe I’m getting old? Trust me, I made every excuse I could in my head to not see my doctor. Then I woke up one morning and my right pinky was red, swollen, and tender. At this point, I gave in and made an appointment.

I won’t delve too deep into the scientific details, but basically my ANA blood test was positive and my RA factor was negative. In a nutshell: it’s probably an autoimmune disease, and it’s not rheumatoid arthritis. These results earned me a trip to see a rheumatologist.  I was the youngest person by at least 30 years in that waiting room and that did not help ease my mind at all. I was scared, yet I was also in denial. I was waiting for someone to say, “Oh, you know what? Looks like this was all a fluke. Everything is fine!” To be honest, I still pray for that every appointment.

I’m not sure how much you know about autoimmune diseases, but they are hard to pin down and diagnose. It wasn’t like I saw my rheumatologist and she was like, “Yup, this is what you have!” It was more like, “Um…let’s look at your symptoms, draw some blood, do some x-rays and go from there.” It actually took about 3 years to get an actual diagnosis. I have bone erosion in my wrists, a patch of psoriasis on my scalp, painful joints, low vitamin D, and FATIGUE. Oh, the fatigue. I almost think it is the worst part of it all. It is hard to describe because it is so much more than being tired. It feels like having the flu 24/7. I tell my husband that it feels like I am full of wet sand: sluggish, slow, heavy.

I could write a book on the ways this diagnosis has changed my life: the chemo shots, the change of jobs, etc. But that’s another story for another time. It’s nice to have a name to what is going on with me, but it is also surreal. It’s surreal to think that this is not going to get better. It’s surreal to think I inject myself with crazy meds every week. It’s all so strange. Sometimes it feels like I’m floating above myself looking down at it all.

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