This is what my bedside table currently looks like. In my living room there is a coffee table pulled up close to the couch that is similarly littered with lotions and heating pads and a back massager and all the rest of the detritus of the ill. My health is really bad. It’s been bad for a while now, but I was pushing through (because that’s what women do) so I could take care of Atticus.
Atti’s hip surgery came before I was even out of my recovery window for my own surgery. I lost our IVF babies while he was in the hospital. His needs have been so immediate that there was room for little else, especially paying attention to something new. But eventually I reached a point that I couldn’t ignore any longer. I had no energy. I hurt constantly. And I still have all the other nagging symptoms that could be anything but still make life difficult. I can’t go out in the heat or I’ll faint. I get dizzy and can’t feel my toes. I get tremors in my hands and legs. Spots in my vision that look like pieces of pepper swimming through the air. I can’t sleep and yet I’m so. so. so. tired.
Historically, whenever I have a new symptom that doesn’t make sense and isn’t enough of a problem to raise a fuss about, I just chalk it up to the endometriosis. Except this time I can’t do that because I just had a surgery by one of the foremost experts in the world. Endo should be in remission for a while and I still have these symptoms that make me as nonfunctional as I was in the worst days of my endo. I spent my 20’s disabled. I started this blog when I was disabled. I know non-functional, and that is where I am.
Luckily, I have a good doctor who knows how to treat pain. She knows I have a disabled kid and so she is always on the hunt for caretaker injuries. When I showed up with pain she sent me straight for x-rays which revealed that my neck is, clinically, jacked up. So then she ordered an MRI. And I asked her, while they were in there, if they would give my brain an MRI too.
The state of health care in America today means that every patient has to be their own advocate. I can’t go to the doctor every time a piece of pepper floats by my view, and even if I did she wouldn’t have the time to spend with me to figure out the source of every twinge. There were a few days a couple months ago where I felt like I was constantly swallowing my saliva. Like, I was struggling to keep up there was so much. I googled “excess saliva” and found that there were two options. 1) Pregnancy 2) Multiple Sclerosis. I did not turn out to be pregnant.
When I asked for the MRI on my brain my doctor asked why I’d want one, because she had to justify it to my insurance. I gave her my laundry list of stupid symptoms, told her the saliva story, and she shrugged and said she’d see if she could get it approved. Since I don’t know of anyone in my family that has MS, I figured I was just ruling out one more thing on this long search to find why my body acts so screwy. I didn’t really believe that I would actually have MS.
But I do.
The MRI came back with a 5mm spot on my brain.
My GP sent in a referral to a neurologist who will run a few more tests, confirm a diagnosis, and start a treatment protocol. She emphasized to me that there are really great treatments for MS and there is every reason to believe that I have healthy days ahead. In fact, my experiences with doctors tells me that I’m actually lucky things have gotten so bad because now they know what to do. When symptoms are just an annoying obstacle in your day they don’t care. But when things are bad, suddenly they pay attention. So in a way, it’s a good thing that I’m deteriorating so rapidly because it gives them something to measure. I just have to white knuckle it until October 4th when I meet with the neurologist and find out what our next steps are, but that’s still 3 weeks away, and I’ve been waiting for over a month. That’s a long time to stew.
I’ve broken the news to friends and family but I’ve been resistant to go public. I kept feeling like I needed the neurologist to tell me I really for real and true had MS before I said anything. I still do feel that to a degree, but I can’t really pretend that something isn’t happening here. It made me physically ill to think about spreading the news only to go to the neurologist and have her tell me that it was nothing. I guess having gone through so many years of being dismissed and mistreated over the endo, it’s in my head. I know how crucial it is to be seen as credible when you are trying to get health care, and anything that threatens to put me into the ‘psychosomatic’ category literally threatens the quality of care I receive. From doctors, sure, but even from friends and neighbors. When you are sick or disabled, you are constantly judged. And if someone judges you and finds you wanting, you don’t get support. Enough years of that will drive you crazy. So even when I had the MRI staring me in the eyes, even as those flecks of pepper floated past and my hand shook for minutes at a time, I was still afraid to claim it until the expert told me I could.
But now, I can’t afford to wait anymore. My friend Amberly has been living with us to help take care of Atticus and she had to sit me down and tell me how worried she was about my eating. For the last couple of weeks I’ve been eating about a cup of food a day. I wasn’t paying any attention to it, but she was, and it’s all because it’s so much damn work for me to chew and swallow. I’ve started falling down sometimes. I can’t sleep at night because the cramps in my legs are so bad. Atti hugs me and I have to try and hide my winces. I’m ready to admit what the MRI told me was true. I have Multiple Sclerosis.
I have another appointment with my doctor on Monday to address these issues and see if there’s something we can do until I meet with the neurologist. I am surrounded by wonderful people who are taking care of me and Atticus and I am in the best of hands. I will be OK. But first I have to accept that this is, in fact, where I am.
As I’ve been learning to accept this, there have been a lot of times when I’ve been afraid. Imagining the worst. Picturing my ability deteriorating permanently. And in those moments, knowing Atticus has been my salvation. If the worst happens, I’ll end up in a wheelchair. And I already know that that’s not terrible. Atticus is thrilled that we’re now “brain twins”, and I am grateful that I have his example of bravery and determination to get me through my worst moments.