Thursday, February 25, 2010

Poetic Inspiration

by William Ernest Henley

Out of the night that covers me,
Black as the Pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds, and shall find, me unafraid.

It matters not how strait the gate,
How charged with punishments the scroll.
I am the master of my fate:
I am the captain of my soul.

Monday, February 22, 2010

Where's MY Mommy?

I have a cold. It's not even that bad of a cold. No fever, no phlegm. Just a runny nose, a stuffed head, kind of run down feeling, and a little cough. But you know what? This annoys me more than having a chronic, incurable neurological disease.

I'm taking over-the-counter nasal decongestant, drinking tea with honey, making sure I'm getting enough fluids, etc. I have no doubt that I will live even without medical intervention. But in the meantime, I want to climb into bed and be taken care of. I don't remember that ever actually happening when I was a child so I don't think this is nostalgia.

Maybe it's about an unfulfilled desire or may needy is the sick default response. I want to be served chicken noodle soup and juice, and have someone take my temperature with their lips on my forehead like I do for my kids. I want to have extra blankets tucked in around me and be told that I can and should just rest. I want a mommy. Not my mommy. Just A mommy. 

Wednesday, February 17, 2010

Hump Day Ramblings

They updated videos and journal entries at I love getting to know my fellow vloggers through their contributions and I love laughing at whatever I said and however I wore my hair during my video (since they usually post them at least a couple months after they're shot). It's funny. My life feels like it moves rather slowly but I think it's actually parading along at a breakneck pace. I think I'm enjoying the journey most of the time.

I'm lonely. I'm saying and writing that out loud because I'm still having the whole love affair with myself and my higher power and I'm trying to trust that when the time is right, I will be in love again and it will be better than I've ever had or could even imagine. Rushing that readiness is impossible and, as I so delicately tell my friends:  How will you know when Prince Charming is at the front door if you are in the backyard blowing the garbage man? (And that is NOT a slur against sanitation workers especially since I have a really cute one picking up my trash every week.) I swear I'm not going to go on a casual sex rant...well, maybe a little...but my statement is not to suggest that casual, SAFE, mutually-respectful, honest sex is wrong or immoral or whatever. In my opinion (and that's the only one I am authorized to express), it is a wonderful thing...if it's what you want. I have done it and enjoyed it immensely. Nuf said about that. I just know that it is not what I'm looking for or want right now and why eat potato chips for dinner just because you're hungry when you can wait and have a gourmet meal. Geesh, I'm full of the dumb analogies this evening. :-)

I am struggling with the bills. I mean, I have a job and I live within my means...more or less. I am struggling with ORGANIZING the bills and paying them in any sort of organized, disciplined fashion. I would love to have a personal assistant to organize my bills and my medical appointments and the kids' school papers and my LIFE. Others have written of this, as have I, but I think I actually need a wife.   A 1950s, comfortable in her role as the support system that allows the family to function properly, wife. I need one. Hmmmm. Maybe I could kill two birds with one stone, here...

I jest.

I am seeing my new neurologist next week. I think this may be my 6th one. There was Kenny Chang, the neuro-opthalmologist who diagnosed me. Then there was Dr. Teeth, his boss, who scared me. Then there was the young cute one who got me started on meds. Then there was Dr. Pless who thought he was God and that I should worship him and his treatment plan, no matter what. And then there was Dr. Lopez-Diego who, apparently, thought she had to protect me from all that pesky information about Tysabri that I must be too stupid to understand. So, with this guy, my intention is to be on time (no small task), honest, assertive, respectful, prepared, and thoughtful. I will take notes to the meeting and at the meeting and I will call with any follow-up questions. Or have my wife do it.

Sunday, February 14, 2010

Loving Myself

Happy Valentines Day...or whatever. 

I think Valentine's Day is a little silly. It's become this Hallmark holiday that somehow combines the celebration of a martyred saint with a flying baby in a diaper to guilt people into buying stuff to prove their love. But then again, I love getting flowers so I guess that makes me a bit of a hypocrite. 
I do think love is a wonderful thing to celebrate and I am warmed by stories of true love and commitment. I want to believe that once I figure out what I want, the Universe will bring me a great romantic love--better than any I've had before. Because I will be better than I was before. Even without a romantic love relationship in my life right now, I have embraced Valentine's Day this year. I've decided to rededicate myself to loving me. So far so good.
It's two days into my three-day weekend and I am on day 5 of no sugar, I've been to a meeting, I did work on my recovery writng, I went ice skating with Ruby and Zane, I went out to hear some great blues music and dance with a friend last night, I went to church this morning to be with my spiritual community, and I've had down time just hanging with the kids. Life is good. 
How about you? Are you  recognizing and enjoying all the love in your life today? Or at least enjoying all the candy?
"People are like stained-glass windows.  They sparkle and shine when the sun is out, but when the darkness sets in their true beauty is revealed only if there is light from within." ~Elisabeth K├╝bler-Ross

Wednesday, February 03, 2010

Hey, I heard you have MS!

A few weeks ago I went into the office for an on-site meeting with a project partner. I like the guy. He's an engineer who consults for biotech firms. He's kind of geeky but in a cute, social way. At the start of the meeting, before anyone else joined us, the guy said, "Hey, I heard you have MS."

When I stopped laughing, I managed to mutter, "" Then other people came into the room, the meeting started, and we moved on to work issues.

As you all know, I am all out there with the MS. So I wasn't mad or anything. It just struck me as really funny that he would a). know; b). care; and c). say something about it in such an offhand way at the start of a business meeting. I didn't mind exactly and I definitely preferred his tone to the whole pity response.

So, that was it. Then, last week he gave me a call and asked me if I minded talking to him about my MS. I assured him it was fine. I did wonder, but didn't ask what prompted his interested. I just assumed that his wife or sister or someone had just been diagnosed.

It turns out that this guy is very involved with MS research and education. I'm not sure why he's aligned himself with this particular cause (I've made up a back story about a disabled mom who was diagnosed with  PPMS before any of the disease modifying drugs came along, but I have no confirmation).

He is on some MS board and knows the head of a world-renowned MS Center in Atlanta, GA. So, during our conversation, I found out some shocking, new information about how Tysabri has been proven to help people with optic neuritis and has even shown some reversal of optic nerve damage. And, apparently the risk of PML--a rare brain infection you can read about here--is greatly reduced with the help of a new blood assay that tests immune competency and a virus that is present in more than 60% of those who get PML. 

So, the thing is this. I am not a neurologist. I cannot and would not prescribe myself Tysabri or any other medication. But I asked my neurologist about Tysabri about a year and a half ago--before my vision deteriorated to the point that I stopped driving.

The first time I asked about Tysabri, it was after my first or second vision with my new neurologist when she told me that I had more lesions on my MRI and that she was thinking about prescribing me something other than the Rebif. I said, "I've been reading about Tysabri."

Her response: "We don't prescribe that here." Clear as day. I assumed the "we" and the "here" were the MS Center where she practiced.

A month or two later, however, I was in the MS Center's infusion center getting my monthly Solumedrol infusion, and I met a woman who was there getting a Tysabri infusion.  I was disturbed and a little angry but I decided to trust my neurologist and to see what the next MRI looked like.

So, I waited. And then, the next MRI was this fall and I went through a bad patient rebellious phase and didn't make it into the neurologist for the follow-up appointment until December.  Again, I heard that there were more lesions and that she wanted to make changes and treat my MS aggressively since I am relatively young and not at all disabled.  Again, I asked about Tysabri. This time she said, "No, I don't prescribe that."

So, I decided to put on my big girl shoes and confront the issue straight on. "Um, the last time I was here, " I began, forcing myself to look the neurologist straight in the eye, "You said 'we don't prescribe Tysabri' but, in fact, I know there are patients who are getting it right here in the Infusion Center."

"You must have misunderstood," she responded. "I never said that you couldn't get Tysabri here, I said that I would not prescribe it. The risks of PML are too great and I don't think it would be responsible."

I didn't misunderstand. I know I didn't. I also know--now--that the Rituxan she recommended as the alternative, more aggressive treatment is not even FDA approved for MS and there is a risk of heart issues and the drug would, kill all my B cells and basically kill my immune system.

So, I've decided that I need a new neurologist who treats me like a big girl who is smart enough to handle all the information and make my own, grown-up decisions about my own disease. I do not want a doctor who picks and chooses what to tell me and whose bag of MS treatment tricks is fully stocked with all the options.

I have an appointment later this month with another neurologist at the MS Center. According to the patient coordinator I spoke with, this guy prescribes Tysabri and all the other MS medications. In other words, he is in possession of the full bag of tricks.  I'm going to talk to him about the new information I've received and see if Tysabri is right for me. And then, if he recommends it, I'm going to take the blood test to assess my immune competency and the presence of this virus to see, if I'm in the high risk group for PML. And, if I end up taking Tysabri and my vision improves, I am going to write a letter to the director of the MS center and to the Central New England chapter of the MS Society, and complain about the other neurologist by name. How dare she treat me like a stupid child. It is MY disease.