Neurologists, rheumatologists and orthopedic surgeons, oh my!

When we last saw our heroine she was lying in bed (what!? No, can't possibly be...oh wait) fighting a bout of asthmatic bronchitis. I'm happy to say without much fuss, other than copious amounts of medication and a trip to urgent care, it was defeated.

Sooooo......where should we start?
I went to see my spine surgeon for my follow up, and his news was annoyingly bad. The fusion on the left side of my spine isn't healing. It has been determined that a year ago when I tripped on a bottle of bubbles the kids left on the floor, causing blinding pain and two ER visits, I broke my bone graft. The theory is it had started to grow to the bones, but when I fell I snapped it off and now because of that, it won't grow back and heal.
To solve this problem I was given a spine growth stimulator- an electric pack I strap to my back once a day that shoots electric pulses into my body to stimulate the cells that create bone.
Cool, huh? It would be really cool and super easy if it didn't come with the requirement to not put any weight on my left leg for 8 weeks. Yep, the walker is back! I was forced to get a more rugged "off roading" style, but it's still a walker. I don't love the walker. But.....
"So, if the bone growth stimulator doesn't work, what then?"
Dr B gestured to the poor skeleton man hanging on his wall "Oh well then we open up your back so I can see the joint, scrape it out manually and basically start over, only this time it's open back vs non invasive".
"Old school style"
"Old school style" a nod and a smile didn't make me feel any better about a 6 inch incision across my back and another 8 weeks in bed.
So while that was quite motivating to do what I'm told, I'm still finding it extremely difficult to keep my weight off of that leg. I don't need to be reminded of what's at stake. That doesn't make it any easier to chase after a preschooler with a walker....

Luckily, that's not the only health issue consuming my mind! Bringing us to specialist #2. New symptoms involving balance and vision issues, numbness and weakness in my limbs got me a free ticket to a neurologist! Exam, MRI involving a cool cage around my head and 6 vials of blood later....he ordered more tests. Three more tubes of blood and I was rewarded with two positive tests for Lupus. This all earned me an all clear from MS, the main concern, and a pass back to rheumatology. They're a little like a basketball team, and I feel like I can hear the crowd cheering as I get passed back and forth.

My rheumatologist is fantastic. She's warm and kind and compassionate, she has a daughter the same age as my son and we laugh about discipline and the craziness of 3 1/2 year olds. In this appointment however my usual sunny disposition was severely challenged by a conversation about severe fibromyalgia and Lupus. She leaned more toward severe fibromyalgia at that point in time because of my lack of the skin manifestations of Lupus, and she was concerned that the blood tests were false positives due to the nature of the test ordered and preformed. So, she ordered more sensitive and specific tests and said goodbye with a tentative explanation of worsening/ more severe fibromyalgia and "as you know there are no treatments for fibromyalgia." I took the box of tissues she'd given me as my battle to keep the tears away failed at that last part and proceeded back to my good friends at the lab.
"There are no treatments for the pain and fatigue you have". "It sounds like you are doing everything you can.". "I don't have anymore answers for you."
All of these things ran through my head as my heart was strangely numb walking to the lab to hand up 6 more vials of blood. "These tests will give us a clearer picture regarding lupus, but I do not expect them to come back positive."


That day I was numb. Sometimes that happens as a coping mechanism I guess. My brain and heart just turn off and I just sit or lie in bed basically starting at a wall. Picking up my kids and being mommy, including dinner, baths and bed as my poor M had to work late, was yet another one of the hardest things I've had to do. "Mommy's fine. Just tired.". "We're driving through a take out place what do you guys want?", "No honey, no more books, let's just get tucked in...". "Let's just do a super fast bath". Got me through to bedtime and thankful oblivion.
The next morning my glass was back to half full and my attitude was reset. Fibromyalgia is not damaging or degenerative, Lupus is; fibro is not going to damage my kidneys or heart, lupus would. So, even though there is no obvious treatment for my symptoms, I tried my best to focus on those good things and get on with my life. I'll get through the next few weeks on the walker and then i'll figure out how to make me feel better. More exercise, different supplements, acupuncture, yoga.... Etc etc. There are always options, I just need to dissect it and rearrange the pieces to figure out what they are.

Then the blood test results came back.
Fully expecting a negative result like my Dr did, and having resigned myself to a false positive on the first and second tests I had to blink and

double check the results when they came back positive again. They came in on Saturday and my rheumatologist's assistant called immediately Monday morning to set up a telephone appointment with my Dr, odd for her as we usually communicate through email. The appt is next Monday. So, here I sit and wait patiently.
Who are we kidding, I've already emailed her to ask about the results. It's annoying and obnoxious, but we're not talking about a hangnail here, we're talking about 3 different positive tests for a major disease. Right? Yeah ok, it's obnoxious. I'm ok with that right now.

That leads us to this moment. She hasn't responded yet, so here I do actually sit and wait and wonder. Not my strong suit, but hey I can't do anything anyway since I have an electrical pack strapped to my back I'm not allowed to move while wearing, and am not really even allowed to get up.

To be continued......