Last Half of my season.

This weekend I'm flying to Dublin Ireland for the Dublin Rock 'n Roll Half-Marathon. I'm really excited to be heading to Dublin. I will confess that my training hasn't been all that great or consistant, getting leg cramps every time I run hasn't been conducive to maintaining motivation but I'm still going to give it my all.

This event is the last event I've signed up for this year. I'm tempted to sign up for at least one more triathlon, but not having any income at the moment, I can't justify the expense. Maybe a break from events will be a good thing, I can focus on just trying to get back into some better shape. 

I still want to do Ironman. I'm hoping that getting in contact with the Rocky Mountain MS Center I can maybe work with people who could help me achieve that goal. I would like to generate some interest and support around my book maybe find some way to subsidize my training.

Full time writing, not as easy as one thinks

So this whole quitting my job to be a writer is a lot harder than I expected. One would think that having all sorts of free time to write would be conducive to you know, writing. 

It turns out that its not so easy. I can't count all the times I've sat in front of a blinking cursor waiting for inspiration to strike only to be mocked by a blank screen. And the novel I was hoping to crank out this month... Yeah well, that's a whole other issue.

On Friday I leave for Ireland to run in the Dublin Rock 'n Roll Half Marathon. I'm hoping that the travel will help inspire me. Maybe I can pen a short story or essay or something, or maybe a review or two of some of the places we go, either way I'm hoping to find some direction or focus because right now I'm feeling pretty directionless.

Mountain Bike Weekend

This weekend I went up to Wyoming with Jeremy and the boys and our Boy Scout troop for a mountain bike weekend up at Curt Gowdy State Park. It was a good time over all, we had a little excitement on the way when the straps on our bike rack failed and Jeremy's bike fell off while we were driving down the freeway. Luckily, no one was hurt and the bike survived with only a few scratches and scrapes to the frame. 

Ironically, in the time leading up to the trip, the boys weren't all that excited to go mountain biking, but when the time came to hit the trails I was the one who was hesitant and struggled with wanting to get out there on my bike. Ever since the Xterra Lorry Tri last year when I crashed my mountain bike and broke some ribs, I've not been all that comfortable riding the trails. I probably should have gotten right back on the proverbial horse right after my accident, but broken ribs kinda hindered getting on any kind of bike let alone a mountain bike.

I got out on the trails, but I never really felt comfortable and I can't say that I enjoyed the riding part of the weekend as much as I would have in the past. Lately, I feel like my center of gravity is unstable and I don't even ride my road bike as much as I used to. I'm hoping that if I go on Tysabri at the end of August then maybe some of that will be resolved and I can get back to doing some more of the things I enjoy.

Medication (part 2)

So my appointment with the Rocky Mountain MS Center at University Hospital in Denver was... Interesting. First off, I've never been to see someone who actually specializes in MS, I've only ever seen regular neurologists who are knowledgable about MS but see and treat a wide variety of other neurological conditions.

There is a big difference seeing someone who really knows MS. One big one being the information they have especially when it comes to medication. For over two years I've been out spoken against my taking the disease modifying medications. I've hated how intrusive into my life they can be, the side effects, and the psychological impact of having to deal with a daily reminder that I am sick. Plus the fact that I could just as easily relapse on meds as without, so why make myself feel miserable if the MS is still going to get worse?

I've shared my issues with other doctors but none of them listened, they either pushed different meds on me or just ignored me entirely. No one cared about my perspective. 

It turns out that the standard of care recommended by most neurologists for MS is backwards. They recommend courses of treatment that are the least effective and it isn't until all else failed and the disease has progressed that they actually start trying treatments that do something but at that point there's been significant progression and damage. 

The doctor I saw yesterday wants to treat me as aggressively as possible with a medication that has a strong track record or actually doing something, including helping with current symptoms. The only thing is, I have to spend 3 hours in a clinic every 28 days getting an infusion of the med and aside from the possibility of an infusion reaction I would not have other side effects. Well, that and there is a chance of developing an infection, but the risk factor is pretty low.

I'm seriously considering going on this medication. If the low to no side effect claim holds true, there is no reason not to even with the risk of secondary infection.  There is a lot I have to do before starting... They took a ton of blood yesterday and ran all kinds of tests, I'll need an MRI. I go back in a month, and if all goes well I may go on a new med. 

Medications - to take or not to take, that is the question

Tomorrow I have an evaluation at the Rocky Mountain MS Center. I had one set up earlier this month to see if I could go on Tysabri, a MS medication, but the appointment fell through and even though it was rescheduled, I'm kind of on the fence about seeing another MS doctor.

I've not had good experiences with doctors related to MS. My first neurologist made me feel small and insignificant, and all but called me stupid when I told her I didn't want to take the disease modifiers anymore. The second doctor I went to, on the recommendation of someone close to me, completely lost interest when I again explained that I didn't want to take the shots anymore. It seems to me that unless I'm willing to take the drugs, doctors have no interest in working with me.

I get it, there is all sorts of data and research that supports taking medication to slow the progression of the disease, but no one seems to care that, for me, taking the medication made me feel worse while changing my diet and exercise habits made me feel better and all but eliminated most of the MS related symptoms.

I don't get why there isn't a lot of research into the effects of diet and exercise. The doctors I've seen said, that diet and exercise can help improve mobility and over all health, but there seems to be nothing about diet and exercise when it comes to progression. All I've heard from doctors is that the only way to slow the progression is to take the meds.

Excuse me for sounding cynical, but pharmacology is a very big and lucrative business, I don't know if I trust a recommendation where the only true guarantee is that if I take it, I contribute towards making a lot of other people very rich.

I would love to find a doctor who would be willing to actually work with me, who would monitor my condition for potential progression, and who actually listens to what I have to say. I just don't know if I'm going to find that tomorrow.