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.

Has it really only been 4 years?

Four years ago this past July I started experiencing my first round of MS symptoms. After a month of testing and waiting and even more testing, my results came back with a pretty conclusive MS diagnosis.

Four years... Honestly not very much time, but it feels like its been so much longer. Looking back at who I was prior to being diagnosed and comparing her to the person I am now, it just seems like more time should have passed. I honestly can't remember a time when I didn't have MS.

Amazingly, I'm not sorry that I have MS. It has forced me to really evaluate myself, my life, my priorities... I wouldn't be where I am today if it wasn't for MS. Sure things aren't always as easy as they once were, there are a lot more things I have to be careful of; not over heating, not over exerting myself. But there a a lot of things I can do now that I hadn't been able to do before; run a mile, run 5k, participate in a triathlon, run a half marathon... The list could go on for quite a while.

One of the best things having MS has taught me is to not just sit back and accept limitations other people put on me or more importantly the ones I set myself. I don't know what my future holds. I could wake up one morning with a nasty relapse and can't get out of bed, or maybe that never happens. But one thing I've learned is to do as much as I can now, while I'm able, push myself forward, make strides so that when my mobility does start to deteriorate it will take longer because there will be a lot of mobility to go through. 

One thing is for certain, I'm not going down without a fight and for me every race, every run, every bike ride is just one more battle in my own personal war against this disease.

If I could go back four years and tell myself one thing, I think it would be not to take anything for granted, because you never know when the things you used to do easily become almost impossible to accomplish. And most importantly...

Don't tell me what I can't do.

First Tri of the season

Today was the 2013 Boulder Sunrise Sprint Distance Triathlon. Two year ago, I did my first triathlon ever at the 2011 Boulder Sunset Sprint Distance Tri and today I remembered why I got into triathlon and how much I love this sport. Todays race was AWESOME!!

Now I should preface that leading up to this event, my training was sorely lacking. I just wasn't motivated to get out on the bike as much as I should have not to mention I had the brilliant idea to switch out my regular pedals for ones with clips and shoes that clip in... a week before the race. Plus, last night I went to a party to celebrate a good friend's awesome new job and enjoyed pizza and margaritas, the corner stone of any good pre-race meal. Suffice it to say, I wasn't feeling overly confident heading into today's event.

The most consistent part of my training was the swim and ironically, it was the hardest part for me today. However, it wasn't lack of skill or ability that got me but that the water was so fricken cold that right off the bat my calf muscles threatened to seize up on me. I managed to do reasonably well, despite the cold until about 200 meters from shore, when another swimmer accidentally came up on me causing me to tense suddenly. My left calf instantly stopped working and I couldn't move my leg at all. Initially I was worried that I was finished and would need to be pulled out of the water, but I flipped onto my back and did an easy back stroke while kicking with my one good leg until I felt reasonably certain that I wasn't going to drown and could start to work my left leg again. The leg cramp incident screwed up my swim time, but I finished and made my way to the bike which was the area I trained on the least.

As I mentioned before, I'd switched out the peddles on my bike a week prior to the event. Everyone and his brother who cycles had told me for years that I really needed to get clip peddles with shoes and cleats if I wanted to get the most out of my road bike. I'd been resistant to clips because the idea of being clipped into my bike was unnerving... what was I going to do if I to make some sort of quick evasive maneuver? Finally, after some research and asking questions, I settled on the types of bike peddles that would work for me and then took advantage of REI's great Memorial Day sale to pick them up.

Now up to this point, I'd had all the accoutrement that goes along with cycling with the exception of the pedals and shoes and let me tell you... I still managed to feel like some kind of cycling poser, wannabe, when ever I encountered other cyclists on the road or at events. So, having real cycling pedals finally, I wanted to put them on my bike and truly fit in with the crowd. (Seriously, its like high school all over again and like high school my insecurity was all in my head) Of course, in my adolescent desire to 'fit in' I broke a major rule of racing which is... don't switch out your gear right before a race. 

Needless to say, the bike portion of the race had the potential to really suck, however what little training I did with my new pedals coupled with my familiarity of the course help make the ride a whole lot of fun, and at that point I started really enjoying myself. About halfway through the bike part I came across another participant on the side of the road and ask if she was okay to which she replied 'No'. So, even though it was going to mess with my timing, I stopped to see if there was anything I could do to help her. (Apparently a couple of spokes on her back wheel broke) She was amazed that I actually stopped, she said she'd been there for a while and everyone else just flew past. There wasn't much I could do to help, and right as I was getting back on my bike to head out a SAG vehicle came to assist. Even though there wasn't anything I could do, the girl was grateful that I stopped.

Traditionally, the run portion of a Tri is the one I both dread and struggle with the most. I am just not a good runner no matter how much I run. Today how ever was a slightly differ story. I was still slow, I had to walk portions, but the temperature was delightfully cool and the sky full of clouds, and the run just didn't suck.

All in all, despite not training well, the leg cramps, and stopping to aid the cyclist, this was still my best triathlon. I completed the race in 2 hours 35 minutes, a personal record. I have a long road ahead of me to get to Ironman, but so long as I get focused on training, it's a rewarding one.

Just don't want to be the slowest person anymore

So yesterday, Jeremy and I took a small group of Boy Scouts out on what has become our weekly training run in preparation for BolderBoulder. Calvin is an excellent runner, but Hobbes is not and often struggles quite a bit. However, for whatever reason, no one wanted to run yesterday and my biggest thing was to get all the boys to at least take the 5 miles at a fast walk if they weren't going to run.

With the pressure off, Hobbes was surprisingly quick. Instead of lagging behind the whole group, he was trying his best to keep up. He told me that his personal goal for the day was to not be the last person for a change. I can totally relate. It seems as though no matter how hard I try, or how much I train, everyone else always seems to be faster than me, better than me. Sometimes it can be hard to want to put myself out there and try.

This afternoon, I went out for a bike ride, my first real ride of the season. I have a triathlon in June, and I have been woefully lax on my training. I was sure that my ride today was going to be hard and slow and just suck in general, however I found myself going well, taking the hills comfortably, and for the first time ever not the slowest person on two wheels. It felt good to feel strong in spite of not having ridden these past few weeks/months.

On our run yesterday, Hobbes fulfilled his personal goal and was not the last person to the park. He wasn't the fastest, but he wasn't the slowest and for him that was all that mattered. At least he was out there trying... all the boys were. We spent an hour an forty five minutes going five miles, and in the end that is an hour and forty five minutes the boys were not spending indoors, laying on the sofa watching TV or playing video games. 

Sometimes it's hard to try, but being out there doing your best is better than not trying at all.