Fast Forward

When I was first diagnosed, my rheumatologist termed me “medically boring” which, in his assessment, was a mild form of lupus; meaning it didn’t affect any of my major organs.  Initially, only my white blood cells were affected.  Lupus has caused leukopenia (decreased WBC count), which increases my risk of infection and contributes to my fatigue & bruising.  Originally, this result was a red flag for what they thought might be leukemia – hence the bone marrow biopsy.  Medically boring worked for me – I can deal with naps and only taking medication.  At that time I wasn’t put on any dietary or activity restrictions, was given my medication instructions – Plaquenil 2x a day - and was out the door with another appointment next month…  Sure the fatigue got annoying but I was still able to work and have a social life.  At this point, I felt extremely lucky and thankful – sure I had to make some changes but they were do-able.

And that’s how it went… for quite some time… up until recently.    Even though I didn’t have activity limitations (like working out), my body would limit me in what I could do.  Sure it could’ve been me being out of shape initially but things just seemed different.  I would swell during workouts, my muscles would twitch and spasm (mostly in my legs) and slowly I noticed that throughout the day my arms, hands, legs and feet would fall asleep – the dreaded pins & needles feeling – and it would get worse when I worked out.  At first, I thought it was my shoes so I got new ones – that didn’t work (BUT I got a new pair of shoes J Then I tried different workouts, stretching techniques, nothing seemed to work.  So, I called my doctor and got an appointment – he ran some muscle enzyme tests and blood work and all came back alright (Wahoo!) but the reflex tests… not so much.  In addition to the loss of feeling, I literally have no reflexes at all – meaning when the doc knocks my knee or elbow, my legs & arms just lay there.  Due to this I was sent for an MRI which showed mild lumbar stenosis (no biggie) and mild degenerative disc disease (bummer for when I’m older but other than that no biggie) but thankfully no lesions.  So the next step is a meeting with my neurologist (add another “–ist” to my list of doctors) on July 12^th – one thing I’ve learned not only being a patient in need of a specialist but also a nursing student is that specialists are a pretty big deal and it takes FOREVER to get an appointment with one… unless it is an EXTREME emergency… and even then they say to call 911.   Since the Lyrica wasn’t effective at managing the nerve pain and the only thing that it did do was make me want to eat everything in site, my doctor stopped it and I’m just trying to manage it with heat, ice and relaxation (sounds great I know, but gets old after awhile).  Tomorrow though I am going to attempt to hit the gym – maybe swim… or just sit in the hot tub and relax.  At least I can say I was at the gym J

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So that’s been a quick recap of the last few years to catch you all up – I know, I’m such an exciting storyteller – NOT.  Just had to get that out of the way so that I can focus on the present.  Again to stress, I created this blog to inform & educate people about my illness (hopefully with some wit & charm) and while I’m sure there will be days where I need to vent and such I want this to be a place for people to learn about lupus as well as inspire and encourage those who have the condition to share their story and realize they are not alone no matter how serious or “medically boring” their case may be.  In advance thank you for allowing me to share my story with you.