So I haven't blogged in forever. Like, for-ev-er.....mostly because my 'season of life' has me coming and going, not even sure what day it is, are these jeans clean, did I brush my teeth this morning busy. And that's ok. But now I have something to blog about.
I have lupus.
I.have.lupus.
I
have
lupus
.
The more times I say it, the less likely it will disappear. But sometimes I like to pretend that it could happen.
Let me back the truck up and start at the beginning. Back in Nov/Dec, I started noticing my hands and/or feet turning white and going numb. The first time I noticed this was after a 7am CrossFit work out. While it is normal to puke after an intense workout or pass out, it is not normal for me to lose feelings in my hands/feet and them go numb. I went home, took the hottest shower known to man kind, hubby rubbed my hands, we tried everything to get the feeling and circulation back to them. Finally after several hours, all was normal. It was very painful and weird. My hands were literally white like snow.
After this happening a few more times, after a work out, middle of the day, whenever, I called my personal, 24 hour on call doctor, my bestie for the restie. I texted her a pic and she immediately called back and said, looks like Raynaud's Syndrome. So I checked that out and was like, yea, it does kind of sound like that.....
So that went on all through the winter months. And lemme tell ya, it was so annoying. The slightest bit of cold I got, which I am cold all.the.time, was usually when they would go numb. Now let's fast forward to April.....somehow, I sprained my foot. You would think one would remember what one did to cause this sprain, but nope, not me. I just woke up with it swollen and bruised and could barely walk. A normal person with minor pain would probably sit out a few weeks from all activity. Again, nope, not me. I finally broke down and went to my Doc. We were going on vacation in a few weeks and I really didn't want to be in a boot or any other sort of brace on the beaches of Mexico so I figured I better get it checked out. He took some x-rays and started asking some general Q's. I then go, Oh hey, and BTW, my hands turn white! And I feel weird, not sick, but not well. I was kind of being a smarty pants, but kind of not. So then, those not so general Q's turned into more serious Q's which lead to our discussion on lupus. He ran some prelim tests. Three to be exact. And two out of three came back with indications of lupus.
Fast forward a couple of weeks later, I find myself in the waiting room to a specialist. The whole time thinking, it has to be a false positive. No one in my family, either side, has been diagnosed with lupus, how on earth can I be the first one? I just didn't get it. This time, the Q's were more detailed, covering everything to my miscarriage in 2003 to my back pain after I had Peyton James to what color I paint my toenails. Ok, so not really about the polish, but it felt like we were laying everything out on the table so we might as well talk about polish, right? Right. And how do I know that what I think is common, is not really so common? Oh I sometimes go to bed by 8pm multiple times a week? Oh, I'm that person that needs 14 hours of sleep? Oh, my eyes are so dry that they constantly water?
Tests would take a couple weeks to get back, we'll see you then.
Ok. Sure. No problem. Two weeks? No big deal.
I was able to see my personal, 24hr on call doctor, bestie for the restie a few days before my follow up. By then, I had received email notifications that most of tests were back. So thanks to modern technology, we pulled them up on my phone. Everything she read was negative or within range as to what it should be. Perfecto! It had to still be a false positive. Right? Wrong.
I go in for my follow up. We talked some more about my symptoms and about the tests results. Doc diagnoses me with mild lupus, Systemic lupus erythematosus or SLE. He prescribes a medicine called Plaquenil, one pill, twice a day. Forever.
I don't really understand all this, I'm relatively healthy, I'm never sick, lupus is not in my family (later, after talking with one of my aunts, she believes that several of them have just suffered through it or have been misdiagnosed, so that makes a little sense). But it's still hard to swallow. Apparently, females are more susceptible to lupus than males, and usually is caused by genetic or environmental factors like stress, sunlight, infection.....
I ask, is this something a diet change would help? If you tell me to eat a salad 3 times a day for forever as opposed to taking a pill twice a day, consider it done.
Did I consume too much cookie dough over the years?
Should I have really finished all that antibiotic 3 years ago?
I know I am not supposed to understand any and everything. I know this isn't stage 5 cancer and my death sentence isn't tomorrow. But it's still an adjustment, ya know? I don't get to check NA on all those little boxes on medical forms now. I'll have to always say I'm on medication....
This past Sunday, preacher man said, "God is God, and I am not". And I really needed to hear that. I am not God, but I do need to trust God.
These three scriptures instantly popped into my mind as I sat in the hospital parking lot, trying to let this all soak in...
What time I am afraid, I will put my trust in you - Ps 56:3
Trust in the Lord with all your heart and lean not on your own understanding; in all your ways, submit to Him and He will make your paths straight - Proverbs 3:5-6
For I know that plans I have for you, declares the Lord, plans to prosper you and not harm you, plans to give you a hope and a future - Jer 29:11
So there you have it friends. My prayer is that this medicine will slow down the progression of this disease and that maybe, someday, I'll be able to stay up past 9 and won't have to wear gloves and socks year around.
