MS, the invisible condition. When it progresses rapidly, it's hard to 'prove', people don't readily understand or may not believe that someone is suffering much more than it seems.
The results of my first yearly MRI comparisons are in. Whether it's bad news or good news depends on how you see things. I knew the results weren't going to be 'good'. I know I'm getting worse. Much worse. In only about two years the change is dramatic.
He starts with the MS version of 'good' news. My brain is what the neurologist considers stable. "Three new lesions" he says, "we consider more will appear. Three is within normal expectations." I know I've been losing more words, mispronouncing and slurring sometimes, but not extreme, and my mental faculties are still sharp, I had figured on the results. "Yes, the thoracic, though..."
Lets get to it. This is what I wanted to know. My legs are quickly losing function, and sensory ability has been whacked out beyond all recognition for more than 6 months. This is why, when he wanted to get MRIs of the brain and cervical spine I said no and requested the brain and thoracic instead. My hands, though numbish and weakening, are much more stable and able than my legs, I want to see the thoracic first. He agreed.
He looked at his screen and back at me, we have that rapport now, he finally 'gets' my understanding, so he reads it word-for-word from the radiologist report and I nod. I knew it, but hearing it is another thing. "Significantly more damage, so much he's not counting and he calls it an 'extremely impressive amount of progression', so... not good."
But it IS concrete confirmation of what I know. To me, that is good. I never believed I was in the Relapse-Remitting type of Multiple Sclerosis category. I tried the therapy approved for the course in good hopes, but to no avail. I'm most likely a progressive type for which the drugs on the market don't work. "The Copaxone isn't working for you." and he outlined an aggressive therapy with a couple of scary drugs I'd already discounted from my willingness to try.
His face tells me he knows where my brain was already going, he did his doctor bit and made sure I understood options. I agreed to go along with the blood test to see if I was compatible with the infusion therapy anyway, and told me, whatever my choice, I needed to be off of the Copaxone for 30 days if I wanted to start and was a candidate.
I'm not going to go over side effects. In reality, it boils down to this:
Am I willing to sacrifice the health of my brain, heart, liver and/or kidneys to save my legs? Am I willing to risk shortening my life to *maybe* climb mountains?
The answer is no. Hell no. Am I willing to research and seek alternative therapies? Yes. Am I willing to treat myself well and go as hard as I can for as long as I can? Yes.
Am I doing the right thing for me? Yes.
I quit Copaxone on Thursday, after 1 year and a month. I'm keeping track of the differences I feel being off of a daily injectable drug. Listening to myself.
After all, I am the only one who knows what is best for me. I have listened to the feedback my body has given me all of my life. It led me to a quick diagnosis of this awful condition. It will lead me through it.
15 December 2013
25 April 2013
The multiple sclerosis ‘hug’ is a tight feeling around the torso of some people living with the condition. I understand it to be caused by the spasms of intercostals, the muscles present in between the ribs. It is hard to describe, and harder to live with. I was afflicted by several symptoms of MS before the hug came, but it was the hug which alarmed me enough to seek a doctor.
It came on slowly. It wasn’t a constant sensation, this tight-band feeling just beneath my breasts and all the way around my torso. It felt like I was wearing a 34 bra on my 36 frame, uncomfortable, but not painful. It came and went, depending on my activity level.
I’m not sure of the exact date it came and stayed, but it has been constant for a year. It is easily the most insidious of my suite of MS symptoms. It changes the shape of my ribcage when it becomes very tight. On a good day, it is a 3-4 on a scale from 1-10. Most days are a 5-6, and when relapsing, 7-8. I don’t want to know what the worst of it feels like.
Last month, I realized it was about a full year old. I decided it wasn’t going to just go away. I gave it a birthday of May 1st and told everyone I was going to name it since it was a real thing. Everyone knows I’m a namer-of-things, so this isn’t anything out of the ordinary.
This MS hug is now always present, but it is never seen. It is always in the background and always unpredictable, yet if it wasn’t for the hug coming to join my party, I might not have sought medical attention. I could have had my treatment delayed and been far worse off than I am now.
So to that, I have decided to name the constant hug around my chest Boobs Radley. While many people identify with Scout in the story ‘To Kill a Mockingbird’ I identify closer to Boo, and so does my hug ;) I’ll probably shorten the in-novel nickname to an even shorter nickname for my purposes.
If you can’t live with it or rip it out and burn it, you ought to give it a name and throw a party for it.
22 March 2013
Jessie and Sam:
Mere weeks before MS blew up in my lap, I’d spent an afternoon painting a landscape study outdoors by the side of a neighborhood road. A woman stopped and admired the work I had propped up beside me. We talked for only a few minutes, then in her thick German accent, she wanted to know if I could do a portrait for her from an old photo. For sure, I can, ma’am. We exchanged particulars, size, price, and then I told her I would be back at that same spot the next morning if she decided to commission a portrait.
She was waiting in the morning light when I got there. She had a black and white photo of a couple sitting on their farmhouse porch. They were her husband’s parents, now gone. Her son, their grandson, was moving into a house on the property and she wanted to gift the portrait to him at the housewarming party.
“Do you want it in color?”
“Oh? Can you do that?”
“Yes, ma’am.”… I asked what color his eyes were, and she described the shade of blue then described every other possible color in the photo. She was charming, and I commented how much I loved her accent, it reminded me of my teens in Bavaria. We were fast friends.
She paid me half then, as discussed, and then before she left, I asked “What were their names?”
Her eyes lit that I would ask, “Jessie and Sam”.
So I started like I do all of my oil paintings… sketching it in with warm sienna, a natural base for any outcome, just to get it situated in the canvas to my liking, sharpening the shadows and erasing with thinner when needed and laying white in where I know the highest areas are going to be.
She loved the finished painting, and hung it in an unused room until the housewarming. I saw her a few weeks later. She reported that her husband found the painting, and loved it so much that he wanted to keep it. It hangs in the formal living room. He said, "I'm keeping it, he can have it when I die"