My doctor suggested I write my journey down. It’s been a long one. With vertigo, and chronic joint pain, muscle pain, lightheadedness, fatigue – but these things, these things I can live with. It’s the unknown that makes me feel as though I am dying.
And I know that sounds dramatic. But trust me, I’m not being dramatic. Every time this pain hits, I believe I am dying, that something has invaded my system, and we need to find it because I need to watch my baby grow. I need to be there to guide her. Love her. Hold her.
It began in January. January 10th. The tips of my fingers, mostly my right hand, would get “triggered”. What does that mean? It feels like this: the pain you get when you slam your fingernail in a car door and then push on the tip, letting all that bruised, pulsing blood pool – inflamed, trapped. So my fingernails would be throbbing, swollen, and hot – excruciating pain – so much pain that my blood pressure was Stage 2 Hypertensive. And then, the tips of my fingers, the skin, would itch. Like, tweeker itch.
Weird. I know. Terrifying.
Because, listen – I need to hold my baby. I need to change her diaper and feed her and get her dressed and use my freaking hands, my fingers. For real.
I went to a hand specialist who ordered a nerve test to rule out carpel tunnel.
In the meantime, my primary care referred me to a rheumatologist, believing that it was autoimmune related, specifically Ehler’s Danlos Syndrome.
Sure enough, rheumatologist confirmed Hypermobility Ehler’s Danlos Syndrome – so that explains the chronic fatigue, and muscle and joint pain, and it explains why my thumbs dislocated during and after pregnancy, and my SI joint slipped, my pubic bone separated, and my pelvis slipped (Yay!), but she said that it doesn’t explain the finger pain. It’s unrelated.
The scary thing is, there are 6 subcategories of Ehler’s. One is Vascular Ehler’s, which has a shortened life expectancy. After the nerve study showed no carpel tunnel, my primary care feared that I had Vascular Ehler’s and ordered a vascular study.
Now, I’m a brand new mom. And I’m being told I might not watch my baby grow and be a grandmother to her babies. So, yeah, my husband and I had to deal with that fear. It’s been a rough road. But good news…vascular study is normal.
OK.
So, we’ve had a nerve study and a vascular study – we do a neck MRI, and a cardiac MRI (with HEDS, there is a risk that my valve or something would be faulty). All come back normal.
I see a hand specialist, primary care, rheumatology, cardiology, and neurology. Each of them tells me that it’s SOMETHING. It isn’t stress. But they just don’t know what it is. I’m told to go home. Call it. And hope the pain doesn’t come back.
This was a span of a few months. Months where I carted Scarlett around to doctor after doctor, telling myself that I was teaching her self-care at a young age, to be your own advocate.
It’s hard enough being a new mother, let alone handling incredible pain, and handling the fear of the unknown.
So I called it. Played pretend. You see, the pain comes and goes as it pleases. I’ve tried to track it to see if there is something that “triggers” the trigger. Sometimes I’ll go weeks with no pain in the fingertips. And then – BAM!
So I had a good stretch.
June 19th. It’s back. In full force. Right ring finger. It’s mostly always the Right ring finger. My new doctor runs tests for infectious diseases such as Lyme’s. She tells me she’s astounded that I’m not on pain meds. (They’ve been prescribed, I just refuse.) So she put me on a pain medicine that is used to treat autoimmune, chronic pain. It’s not an opiate. It’s what alcoholics take to stop drinking. And it works. It dulls the pain. I can still feel the finger triggered, but it’s not the searing, excruciating heat that it was before.
Until today.
Today that finger is angry. And it’s moved to the pinky finger on my right hand as well. And I spent the day today thinking that I am dying. Trying not to focus on the pain. Trying to focus on my beautiful little girl. Cringing each time I picked her up or changed her diaper, had to snap up those freaking snaps on her clothes. And it’s not fair. That caring for my child hurts me. It physically hurts me.
Life. Is. Not. Fair.
I had a “friend” (I use quotations because no friend would ever say what she said), respond to my pregnancy news with something along the lines of….”I don’t know what you want me to say…you’re very sick.” But guess what? That little girl is the best thing that has ever happened in my life. And I would snap a million fucking buttons (and probably will) and endure any amount of pain I had to, to have her in my presence. She is my light. And my pain doesn’t make me less of a mother. I’m an incredible mother.
(I’ve been waiting to say this, to get this out, so moving on.)
If this is autoimmune related, we need to figure out what it is because Scarlett may inherit it. And it is my responsibility as her mother to find answers. So that means I must keep pushing, and digging, and man, I’m tired.
What I know: my mother shows autoimmune in her blood, but they don’t know which autoimmune disease she has; my blood does not show autoimmune (yet); my body is inflamed, it treats any foreign object as an invader and attacks (breast milk – whoa); the inflammation seems to now be living in the first joint of my fingers; Lyme’s Disease results came back negative, but I tested positive for one of the aggressive Lyme’s titers, igM-P23 ab, which apparently is specific to Lyme’s, but in order to test positive, you have to show presence of two of the three aggressive titers; I had a tick on me all night after hiking in the Bay Area a few years ago; I am suffering.
My question: is it all related somehow – the vertigo, the lightheadedness, the muscle and joint pain, the FINGERS, or are they separate issues?
So.
I have an appointment with an infectious disease specialist. I’m waiting on a referral to a new rheumatologist and a neuromuscular specialist. I’m going to go gluten free and do an anti-inflammatory diet. I’m going to go to a freaking shaman and get cleansed. (Seriously.) I am doing everything freaking possible to figure this thing out.
But pain, my friends, has a way of making you feel small. Like I want to curl into myself. Ashamed that I’m “broken”. That my husband married someone who needs help. That my daughter has a mother who hurts.
But I have to keep telling myself that I am strong. And I am determined. And I have a good support system. And that every day, every second, is a gift.