I have had time on my hand these last few weeks, this blog is evidence. I have had time to troll the internet checking out what other people with The Invisible Disease are up to, writing about, coping with and soldiering through.
I’ve found some great stuff: funny, sad, insightful and unsettling. Unsettling because it is like looking in the mirror. Because I have This Thing too.
One blogger wrote that on a recent visit to her neurologist she decided to let him know, “you know what, I don’t think I have MS.”
Her neurologist assured her that she did, the symptoms she was feeling were a relapse. Her disease hadn’t magically gone away.
But she was so sure!
She had to have been misdiagnosed, she didn’t look sick on the outside.
That was me. It continues to be me to a certain degree but the reality is once again setting in: I have MS.
I was diagnosed in 2006. Seems like a long enough time to come to grips with something. But I have been incredibly lucky. That first year of going through spinal taps, blood patches (gross), IV steroids, what amounted to days in MRI tubes sucked ass, there is no getting around it. I look back and think sometimes: how did I get through that? The answer, looking back is easy: amazing family and friends.
But as I said, I have been lucky. Since my initial symptoms and diagnosis, I have been virtually relapseless. There have been plenty of days I have felt off, fuzzy, not quite right. That weakness in my left hand never went away and sometimes hot showers would set my skin a crawl.
Since 2006 I have had plenty of time to talk myself out of having it.
This week I went in to my neurologist (who has received mixed reviews as some of you may know) to follow-up on how the old steroids were working. There is no denying things are getting better, but I am nowhere near 100%. As I sat crinkling the parchment on the table, Neurologist and I reviewed my most recent MRI reports: brain and spine. Lesions on c-spine – check, brand spanking new lesion (my first!) on my brain – check!
He said, “Well, these are consistent with the findings for multiple sclerosis so there is no issue there as to diagnosis…” then he said something else but I didn’t catch it.
Wait. Was there an issue as to diagnosis? Did I possibly not have this thing? Stupidly and just for a moment, I felt victorious. I knew it!
But I guess that seals it. I guess it was sealed in 2006.
Talking with my friend who has This Thing, she and I talked about relapsing-remitting MS. How that bitch lulls you into a sense of well-being, lets you jet off to foreign countries, take up running, sleep through the night, walk, and then out of no where you are smashed in the face with it. Just like getting that diagnosis all over again.
I was diagnosed in Chicago under the care of the delightful Dr. Shepherd who I have gushed about before. We sat in his office – I can’t remember what visit number we were up to. Due to the way MS is diagnosed, you can’t walk into a neuro’s office with the first signs of an attack and be proclaimed MS’ed. Instead you are given the diagnosis of transverse myelitis, hooked up to bags of steroids and sent along your way with instructions to return if the symptoms crop up again.
This visit to Dr. Shepherd was after a couple of months without symptoms and I was back, having gone through a battery of tests all over again. I knew what I was in for. I had exhausted the internet of all its autoimmune disease information on this one: the second time around with “transverse myelitis” was the other shoe.
He told me very casually but in a caring way, “we are looking at multiple sclerosis”.
“Wait,” I said, “How do you know?”
Smiling he said, “This is your second attack in a few months, with the banding in your CSF, the lesions on your spinal cord and 20 years of experience, we are looking at MS.”
After that, he gave me a book bag full of information on MS, medication and a CD starring Our Lady of the Multiple Sclerosi Ms. Terri Garr. It was yellow with a long black strap. Black and gold were my high school colors – I remember thinking that. Go Comets!
I walked out of one Northwestern building directly into the lobby of another. I had to sit down. I called my mom. I called Tim. I called Kristin. I called Donna. I don’t remember what they said. I know I probably tried to act like it was no big deal. I hate hate hate when people worry. I think then I went and got a cup of coffee and went home.
The next weeks are a blur. Mom and my daughter came to town. We got a visit from a nurse who taught me how to inject my Rebif by myself. I laid around. It was the week of my birthday. My girlfriends came over, brought cake. I watched Star Wars with my family. I cried a bit. Mom did too.
And then, I stuffed it away. I got better. It became more distant and easier to forget. That particular recovery came with no acceptance. This one hopefully will.
Today I am stepping down the Prednisone dosage, thank fucking God. I barely slept last night and couldn’t nap today if I had a gun to my head (I would have faked it of course but not caught a wink). At one point I was laying on the couch because I just couldn’t sit anymore, there was too much stimulation. I had to have Tim come and lay on me for a while so I could get relief from my skin trying to jump off my body.
I came across another post from another woman with an Invisible Disease, Lupus. She wrote about trying to explain to friends and family what it was like to have Lupus, what did it feel like, she didn’t look sick – how could they know? She came up with – brilliantly – The Spoon Theory and now I share it with you.
I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.
I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.
She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons.
She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.
I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.”
I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick.
I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.
It goes on from there and is worth a trip to the embedded link at the beginning of the passage. Now, I am going off to el coucho to cuddle what remains of my Friday spoons.