Happy Anniversary to Me

[dyin_myelin]

A year ago today was my last normal day. Broad Street Run, a nap in the hammock looking at the sun fragmented through the leaves, and then a night drinking for cinco de mayo downtown. It was cold in the morning, but then it warmed up. Thought I'd just pulled a muscle or slept on my leg wrong, and the rest is probably similar to our collective histories.

In between teaching or tutoring I'd read this pathology professor's notes. They were always compassionate, funny, enlightening, and full of images. I opened the Nervous System section and scrolled down past the dementias and the TBI. "Dread neurological condition." The only other qualifier for this distinction was lupus. "The patient with lupus will look healthy, but they really are quite sick."

I sat for a long time staring at the screen. Feeling sorry for people with MS. With lupus. For myself. I wish I could say that I've "back burnered" it as people in professional positions are wont to tell me to do. Truth is, I am just as scared, just as bitter, and just as fearful of the unknown as 3, 6, 8 months ago. I was proactive with treatment and never asked why me, although after living a healthy life the unfairness and capriciousness of it still occasionally gnaws. I agree with KateAgain, "they" should fix this, "this" should never happen to anyone.

In retrospect, I may have created a perfect storm. Avoiding the sun hysterically so I could look 45 when I was 60. Undergoing ART to maximize conception. Having surgery in Feb. Getting food poisoning. My one food vice, slathering everything with salt. I never knew most of these things could hurt you. I try not to think about them, done is done.

I am grateful for my vision, that it wasn't cancer, that I apparently walk normally and can even run around a little bit. I am devastated that I have lost my attention span, quick retorts, aspects of executive function. Can I do this for 20, 30 years? Do you settle into a growing inventory of deficits and acute attacks that blind you and prevent you from using the toilet like a normal human being and throwing the thing to put in the fridge away and the trash hand thing into the fridge? These things in isolation maybe you can be brave and accept. Collectively, yeah, pretty "dread."

[Thinkimjob]

Pretty crappy anniversary. When I was suspected I might have MS, I read all the old medical books upon which I could lay my hands. No high faultin' internet in those days.
It made for some grim reading.
Now 18 years later, it has wound up much as I feared, but it has been 18 years. The drugs are getting better, but I truly did believe after all this time they might have come up with a cure.
Yeah, right.

[KatieAgain]

[QUOTE=dyin_myelin;

I am grateful for my vision, that it wasn't cancer, that I apparently walk normally and can even run around a little bit. I am devastated that I have lost my attention span, quick retorts, aspects of executive function. Can I do this for 20, 30 years? Do you settle into a growing inventory of deficits and acute attacks that blind you and prevent you from using the toilet like a normal human being and throwing the thing to put in the fridge away and the trash hand thing into the fridge? These things in isolation maybe you can be brave and accept. Collectively, yeah, pretty "dread."[/QUOTE]

Dyin...you are one of my favorite people on this Board. You are intelligent, thought provoking, and you seem to be one very good person who is in touch with their-self. You rock girl!

You know, I have been doing this for 15 years now, and it was very hard for me on the anniversary...still is really. But as far as acceptance, it gets better. I myself will never completely accept this disease...I have MS and indeed it does have me. My cousin has Lupus...and yes...that really is just as bad.

I have done a lot of one-on-one mentoring with military vets with MS...and one of the first things I tell them is that less than a couple decades ago, there was not too much to be done. We have had a lot of breakthroughs...not enough in my opinion...but it is better than it was. I also tell people to start Bucket Lists. JulesA had a nice thread on here about that. I have been through several. Do what you want to do now...don't wait...and when you do feel good...enjoy the heck out of that day.

One day at a time Darlin'...one day at a time.

[tl-tr3]

A story like many here....

Thanks for sharing that. Well written. I agree we need a cure ... no more DMD's -jmo. Money needs to to go for a cure.


I remember going to a MS Walk before my diagnosis , & seeing the various people with walkers , canes , wheelchairs- all wearing the " I Walk with MS" shirts. And I thought that day " Thank God , I don't have MS", this is terrible for them"

Three weeks ago I did the MS Walk wearing the "I walk with MS" .

My reality now.

[Tawanda]

Crappy Anniversary!

In retrospect, I may have created a perfect storm. Avoiding the sun hysterically so I could look 45 when I was 60. Undergoing ART to maximize conception. Having surgery in Feb. Getting food poisoning. My one food vice, slathering everything with salt. I never knew most of these things could hurt you. I try not to think about them, done is done.

I just wanted to ease your mind about this part of your post. There are plenty of what you might consider "self-inflicted" diseases, but I'm pretty sure MS isn't one of them. Even if we "did" anything "wrong", you are right not to waste one ounce of precious energy on such thoughts. My mother was as pure as the driven snow and she still got this diabolical MonSter. To me, you have no more control over getting MS than having brown eyes. If there was a way to prevent it, I wish we would find out now to spare future generations from suffering what we have!

Your post really spoke to me today. Especially about looking OK on the outside while being quite sick on the inside. To be honest, the ONLY time I feel well is when I am drifting off to sleep. It is the moment I wake up that is the worst of my day.

[REG53]

Unhappy anniversary to you, may you not progress any farther.

[Pipes123]

Sorry this is a rough one for you. I hate the reason we're all here, but I'm grateful for the chance to get to know you.

I guess what I would say is please don't rush to judgement as to how you will cope or not. It's still very new.
After five years of consistent wierdness (not the intermittent symptoms I had for 20) and more than two of being diagnosed, I'm finally coming to a place of calmness and making active plans for the next stages of my life. The first two years for me were an odd combination of intellectual fascination at the wierd details of this disease and simple dread and horror. My identity was invested in my mental skill, so the fact that ms hits the cognitive side of things was one of the worst aspects to come to terms with.

I hope you hang in there. I lost a professor I cared deeply about to suicide because of ms. I'm trying not to ask the 20 or 30 year question, just can I do it this year and are there things I want to work on today. I do wonder about the newest drugs and whether they will improve our chances. If they don't, I'm no worse off, so I think I'll try them. I'm also actively working at the neuroplasticity thing.

Thanks for the kind and helpful comments you've made re my issues. Best wishes for your struggle.