Lupus Now Means Something Personal To Me

At work about nine months ago I noticed that my left hand near the pointer finger joint was hurting as I typed. I also noticed my blood veins looked a little extra puffy in that area. In the back of my mind I was thinking that maybe I was becoming arthritic as both mom and dad had arthritis. For some reason I pulled out my Iphone and snapped a photo to document my “discomfort”.

2015 Jan 22 Iphone 117

Throughout the following months I would experience migrating swelling, redness and pain all over my body, mostly in random joints and tendons from head to toe. It would kind of twinge in the early afternoon and by the evening be full blown discomfort. After a night of near sleeplessness, and even the sheets causing discomfort, the morning would come along and within a couple of hours everything would kind of ease up or completely stop hurting. I began to realize that this was not normal and I should get it checked out. More photos.

2015 Iphone May 16 007

2015 June 18 Iphone OKC 382

2015 Aug 8 Iphone 050

I visited my General Practitioner and he decided to run several blood tests since there was a history of arthritis in my family. The results of those tests came back showing that I was severely deficient in Vitamin D (I thought it might be due to the fact that I quit drinking milk and I am not someone who spends much time in the sun) which could possibly be the cause of my pain. So for three months I took 10,000 I.U.’s of Vitamin D and my numbers came back up to a normal range. But alas, the pain was still evident. He recommended that I see a Rheumatologist who could delve deeper than his expertise and referred me. I made my appointment for the next week.

After my consultation visit with my Rheumatologist, I had more blood work and x-rays done, with the results being given to me yesterday. My wrists looked good on the x-rays for whatever she was looking for, no Lyme disease, but I was positive for SLE, otherwise known as “Systemic lupus erythematosus”. Plain words, my immune system is way too active and is actually attacking my own body! Well that definitely explains the pain!

I was a bit overwhelmed yesterday, I know I have a lot to learn about my new and challenging condition. There are a lot of serious things that can accompany this diagnosis and hard core management is of the utmost importance. I may even wind up joining a Lupus support group near me if there is one. One bright thing, patients with Lupus need to stay out of the direct sunlight. No problem here, I am definitely NOT a sun worshipper!

More to come as I experience and learn…


About Moqqi

I was born in the Midwest but I have actually lived more of my life on the West Coast. I am looking forward to that day when I once again am living in the Midwest. Hopefully that will mean that I am retired and getting to live life at a bit of a slower pace! I've been married to the same guy for 36 years! We met when he was working for a semi-pro hockey team and I was selling tickets to the games. He also played hockey at an amateur and college level and I think I fell instantly in love when we went ice skating together and he saved me from crashing when someone behind me fell (I was skating backwards, he was skating forward, so we were facing each other.) and he reached out with his big, strong arms and grabbed both of my upper arms and just stopped me dead in my tracks to make sure I didn't fall over the person. My Hercules! I have two children, a son and a daughter. My son is an Registered Nurse and works in an ICU. He is married to a wonderful girl that I couldn't have hand picked better. They have produced the absolute, most cute and adorable Grandchildren that anyone could ask for! My daughter is now a Fifth Grade teacher. She has a joy and passion for teaching and loving her students that is not seen in many teachers these days. She truly found her calling. I have this blog because I thought it would be nice to have a place that I could share what is going on in our lives and I also just love to tell stories. I'm not a writer per se, but I do love a good story. Even if it's just a short little quip!
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3 Responses to Lupus Now Means Something Personal To Me

  1. Hi. I was wondering what tests came back positive for SLE? I’ve had a bunch done, and xrays, and am awaiting a follow up to discuss them. So far I’ve had a positive ANA and elevated sed rate. Which of yours were positive? Thanks, Celena 🙂

    • Moqqi says:

      ANA Direct came back negative in May. HLA-B27 is Positive / FANA Staining Patterns Homogenous Pattern came back “sky rocket” over normal in Sept. Doc is running another ANA panel series in addition to the previous tests. Has me on Prednisone and Hydroxychloroquine right now so just a bit nervous about the retinal toxicity possibilities. We shall see!

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