Category Archives: rebif

Consistently speedy

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I initially thought that I would just title this entry “consistency” as my run today was 9:19 (new 2015 PR!) and I thought my last two runs had been at a 9:20 pace. As it turned out once I looked at the Training Center program that records my times I actually had two 9:40 runs in between today and the two 9:20s. But I still feel that these runs were consistently “speedy” compared to what I have been running this year, so there you go.

I was really happy with today’s run. It was an injection day so my PR might be caused by the bump I usually get from the rebif injection. However I got there I am happy with my the effort. I didn’t kill myself at all and just felt fairly comfortable with my pace and breathing. Better yet I don’t feel tired now (three hours later) at all which inspires me to run on days I have to play music (which I have been avoiding as my focus just isn’t really there). Last night I played for two hours with the big band after a four mile run and had no real problems. My plan is to still do shorter runs on my music days so I can see how that goes. I think it will be fine.

My heart rate monitor band is worn out. I can get it to stay in place if I stretch it to its limit, but the problem is that it loosens as I run. Today it ended up around my belly which explains the 59 BPM I registered on mile four. But on the miles it was actually in place I did really well. Even at the fast pace my HR was right around 144-148 BPM, and my final mile came in at 153. But I have a plan for its continued use, a safety pin! I have thought about this literally for months and never implemented it. If I do nothing else today I have at least pinned my HR strap into place! We’ll see how long this lasts or maybe I’ll try to get a new one if they are even made (my Garmin is pretty old, five years?)

Is it really fall already?

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Looking back at my last comment I can’t believe it was in June and fall has now, errr fallen. I still am finding my schedule getting in the way of running but there are several factors that I think may actually contribute to me running more: the weather has cooled and I now have more options other than running first thing in the day and I have had one rehearsal cut from my week due to our attempt to focus on our full-length record. All good news and hopefully I will take advantage an get out more.

Another aspect of me potentially running more has been my eating habits. Foe the last couple of years I have found myself eating more at night. In the last month I have rededicated my efforts to not doing that and instead not eating after seven at night. This has made for some uncomfortable stomach rumblings but a much more comfortable stomach in the morning. I’ve lost a couple of pounds as well which I am sure will help the running. I haven’t really gained a whole lot, in fact I have liked the extra girth in my frame to ease my rebif injections. But, enough is enough (for weight gain that is) and I am heading in the opposite direction.

In the last couple of weeks I have noticed a possible ms symptom while running. My gate has felt a bit unstable at times, but not consistently so. It is probably nothing, but something to note regardless. It certainly hasn’t been to the extent I experienced when I had the big issues seven years ago or so. I also aren’t experiencing a drag in my legs like in the past, its been more of a discomfort or should I say slight lack of confidence in my gate.

On other items of late I participated in an ms study regarding exercise. I wore an accelerometer for a week and kept track of the times I wore it. Initially I was excited (and so were the researchers about my participation) because of my strong feelings on the positive effects of exercise on my ms. The funny thing is I actually didn’t run once during the week, but I am sure that is ok as I will be doing it a couple of other times during the upcoming year. I also had to fill out a questionnaire before and after I did the accelerometer stuff. I’ll be curious to hear more about the study and the results they find.

Soggy rebif run

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Why do I call it a rebif run? Well, cause this morning I woke up, grabbed my rig and shot up with the junk. I really shouldn’t make it sound as if I am a junkie, but maybe I am? I say that because my disease modifying drug seems to make my runs go better. I have no idea if this is a real thing or not. Perhaps it is just isolated to my particular physical system, as I have never heard anyone else mention a rebif “boost” but I seem to get it. Makes me wonder if ms folk need to be banned from competition for taking rebif. Does this diminish the success stories of msers running in marathons? Is rebif the next steroids! I honestly don’t think that those of us who have been diagnosed with ms have an advantage over others in the competitive arenas, but maybe we actually do. This could actually be a good thing for ms people as we could get some competition price wise with the black market. I would love to see big pharma squeezed out by my neighborhood pushers! I would be much happier going to my local gym and handing over $50 for a rack of rebif than spending $4k+ for 12 doses from CVS Caremark. This way I also wouldn’t have to deal with the excessive packaging I get from CVS as well. Of course there probably would be a quality hit with getting my injections from Bruno. But what real assurance do I have that my syringes aren’t filled with sugar water? I have never tasted my rebif. Perhaps the sugar boost explains the improvements inm my runs? Perhaps not. Still, some competition for big pharma would be welcome.

So what is the boost I get from rebif? I found this article that indicates just the opposite (sort of) http://www.ehealthme.com/ds/rebif/exercise+tolerance+decreased. The study does say that only women seemed to be negatively affected in terms of exercise by taking DMDs. While the study says there is this decrease in exercise tolerance, the “study” looks to have only had three people involved? Is that right? I would say that is more of a “guess” than a “study”. But what do I know? Still the rebif boost I get seems to be real for me, I have seen it somewhat consistently for years. So it isn’t all bad news for msers! Today I managed my full 5 mile run without walking the hills for the first time in awhile. It wasn’t like I flew up the hills passing disgruntled reed students by like leaves in the wind (there was actually nobody around on account it was so early in the morning – 11AM). Plus it was raining. Actually the real rain didn’t hit until I was out of the canyon and back in Woodstock. Then the skies opened up on me. My last mile I may as well have been swimming.

Good, bad, good…

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The last three days I have had a mixed bag of running experiences. The two good runs definitely out-weigh Thursday’s disaster, so that is a good thing!

Wednesday I decided to break out of my mini-break from running due to scheduling issues. I had a rehearsal that night, so I only did a short run. Nothing spectacular, but I call it a good run as I felt pretty solid in rehearsal. I din’t totally fade beyond the usual fade of a two hour soul rehearsal.

Thursday I headed out later than normal and I don’t think I had eaten nearly enough or hydrated properly and it showed. I was also over dressed and really warm. I had to take many walking breaks to get through it. I thought about trying to push through the malaise, but it just didn’t seem worth it to me. It was just one of those days when I wasn’t feeling it, and I thought it was a good thing that I recognized it. Oh, and my watch wasn’t fully charged and I lost a quarter mile (for some reason) on my first mile. With no stats to read, I was doomed! So I accepted my fate and headed home.

Today’s third-in-a-row run was much much better. I felt tired, but not nearly like I did yesterday. I also gobbled half of an Odwalla bar beforehand to make sure I was at least slightly fortified. Seemed to help quite a bit. Also, today was a rebif day, so I was feeling the boost I often feel from my shot. I almost managed a sub 10 min mile, but ended up coming in just above that. I felt pretty strong throughout, nothing spectacular, but still solid. I did walk the hill out of reed, but that was my only slowdown. My one mistake today was over-dressing again, by the end of the run I felt like I did when I ran the Portland Marathon (which started out on a cold morning and ended in the sun) and had all sorts of gear tied around my waist.

ACA, running and ms

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I am now into my second month of my new ACA platinum plan. There is still much I don’t know yet about how this will work out for me. The chief issue I have is somewhat two-fold. I have received my first rebif order under the plan. As expected I had to pay $1500 of the $4500 cost, but now my max out of pocket has been reached. According to what I have been told, the meds will be covered at 100% for the rest of the year. So my question as I approach my second order next week, is that really the case? The second concern relating to this is will this remain in place? The insurance companies will take in $3600 from me over a year and pay out over $50,000 for my meds. While I am sure they get a break from pharma that we as ordinaries don’t get, they still must be losing money on us msers. I mean they initially refuse to cover us unless the “big gum-min” stepped in and told them they had to. Who is gonna break first? The ACA, the insurance companies, big pharma? According to all the misplaced rhetoric, it better be our king dictator and his commie policies that needs to break first. What we needs is to go back to the way things were before. Yeah right. It is more than obvious that the problem is the insurance and big pharma industries and that they need to bend a bit if we are going to get through this. I was thinking the other day that I believe I will see a cure for ms in my lifetime, but I doubt I will be able to afford it.

So some details on my ACA plan. The premium is actually half of what I was paying before to be in my old state-funded high-risk pool. While my meds are not directly covered (not a single ACA plan would cover my rebif, or any other ms treatment from what I saw (again, why are we blaming Obama for this when it was a decision by the insurance companies? I guess Obama is a much easier target than insurance or pharma), they are considered a “medical need” by healthnet (my new insurance provider) and therefor fall under my max out of pocket. A quick note on my premiums, I was able to cover my wife under the same platinum plan for the same cost of covering just myself under my old plan.

Ok, the rollout was not smooth, we all know that. Damn that obama! Um, I just took a look at the website for our large insurance company and it is also not working and hasn’t for several months. If the so called holy grail of big business can’t make a healthcare site that works, how could we possibly expect healthcrae.gov or any of the state exchanges to work? Maybe we need to do healthcare through Amazon, they seem to have their act together. I had to go through a lot of hoops to get my plan set up, a large ridiculous amount of phone calls to the exchange and the insurance companies. Lots of time on hold, lots of hang ups. My insurance broker who “helped” me had the same experience. It was no fun, and went down to the wire on premium payment date (actually beyond it, but they issued an extension at the last minute.) But overall, I got coverage. It was a pain, but I got it.

Yes I lost my old plan, but I got a better one at half the cost. I am sure most people did not experience a cost reduction like I did, but it is what I got. It is funny, I have been posting this in comments on stories published on right wing websites (and “normal” sites as well). I have gotten much hate for doing this. I have been called a liar, a paid poster and a socialist all for telling the truth about my ACA experience. I was even black-balled by the National Review! What an honor!

So back to running, I ran yesterday for the first time since injuring my back a month ago. It felt great though I found it really hard to get through my five miles. But I did it pain-free! The back has felt a lot better. I still have trouble getting out of bed. It is as if I have no confidence that my back won’t “go out” when I pull myself out of bed. Several times in recent weeks I have forgotten about my back and surprised myself by just getting out of bed no problem. I am having way less issues with bending over during the day, seems the mornings are a bit rough, but way better.

My hope is to run again today. I am pretty sure I will get around to it. I have some work, but not enough to use as an excuse to NOT run. No music to play today at least publicly anyway. I did my rebif shot this morning, so I will have the boost that that often gives me. The weather is gray, but warm in the 50s. It sounds like a run day to me!

This week’s long run

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This week’s long run got pushed further out in the week, I keep getting further and further away from a consistent Monday LSD run. Overall I am going to say that is ok as I have been getting them in and I keep making them longer. However Monday is the perfect day of the week for them so hopefully I can get back on track especially considering that today’s run was the second quality run I did this week (actually second run in a row too). Though to do another long run in three dyas seems excessive.

I feel like I am really building on my base, the long runs seem much easier or should I say less painful! Today’s run was 12 miles exactly and interestingly I almost kept it under a 10 min mile pace (ended at 10:04). I was under 10 through nine miles, but the final three were more or less uphill as I climbed up from the waterfront to my neighborhood. And I can’t really say the entire three miles was all up-hill either, but there are some tough patches!

This was actually the second fast run that I did. Two days ago I did eight miles at a 9:13 pace which felt really good. I was strong throughout and even considered adding some miles to make that my long run but I had a rehearsal that night and was already pushing it.

I’m not really sure what has changed to make these runs feel better. I have been eating and sleeping well, so I am sure that had something to do with it. Still it doesn’t seem like that would completely explain why I have been running so strongly as of late. Both of the last two runs have been on injection day and I have always said that I feel stronger after the rebif, so maybe that has helped as well. My weight is also down a bit and I am sure that is a factor. Whatever it is I’ll take it!

I have been curious to see how my feet reacted to the increase in miles and the consistent longer runs with the zero-drop shoes. I really feel like a convert. I don’t have nearly the fot pain that I was experiencing before with the thicker heals, in fact I wore a pair of boots the other day that made me imagine that this is what high heals must be like! Changing my stride to more of a ball landing/mid-strike (as opposed to just a mid-strike landing) is working better than I had imagined. I have always felt like more of a distance runner than a sprinter. Initially I was concerned that I wouldn’t like running more like a sprinter, but it seems to feel much better overall even though the majority of my running is mid-strike oriented. With the zero-drops I occasionally will concentrate on my feet landing on the balls of my feet and spreading out in my shoes (Altra) expansive toe box. It feels really good landing that way. Despite initially having trouble lifting my feet enough to clear cracks an other obstacles, I seem to have corrected my gate enough so that it is not an issue (even though I am not lifting my feet much higher, at least consciously).

I have been pretty good about fueling for my last couple of long runs, gels and water. They both seem to make a pretty huge difference in my running performance. Today I was starting to fade a bit around six miles. A couple slugs of Hammer gel and my energy level picked up and I was able to comfortably continue.

The long runs have been great but I am reaching that point where increasing the mileage every time is making the runs a huge commitment, both in terms of time and the mental ability to gear up for them. Two hours seems pretty doable, but I know longer runs are soon going to be getting up closer to three (an beyond). My other problem with them is having interesting places to go. I have a pretty decent 11 mile run that I can add onto so maybe I’ll use that as a base for my longer runs and then just add on. Today’s route was new(ish) to me and I could probably use that as a good base as well even though I don’t really care for all the uphill at the end (pretty much my curse living on a hill.

I am starting to think about a long race again. My pace is pretty slow even though I do feel it getting faster (or is that just the last two? Yes it probably is). Still running another marathon would be fun, maybe make it a destination run which would be super fun (then again I can’t think of a better place to sleep the night before than my own bed.) We’ll see.

Oh and did I mention it was 28 degrees when I left? Brrrrrr.

Four runs, four days

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Today I did a recovery run that marked the fourth day in a row I have run. This has always been my benchmark for getting back into running. Over the last couple months I have gotten close a couple of times (three days in a row twice) but never got to the fourth for one reason or another. So today, I finally made it over the hump. I am ready to embrace running again! Not that I ever really didn’t, but my enthusiasm has been diminished this spring.

Yesterday after I blogged the last post, I went out on one of my base 10k runs. I started out pretty fast and decided heck I may as well keep my pace going. I ended up running sub nine min miles for the first three miles. Then, pooped, I stopped the tempo portion and just coasted out the final 3+. The fast portions went really well, but I was exhausted for sure. It did feel prety good to get some speedwork in. This was another run after an injections where I felt extra energy. I wish I knew if that is really a side effect to the rebif or if it is a mental increase to my energy levels.

Today I just did a 5 mile recovery run. I tried really hard to keep my pace under 144 (my 70% recovery ceiling HR) and I more or less failed miserably. I was able to bring my HR down to that level several times but my avg was 150 and I really felt that is where I hovered for most of the run. Running four days in a row could have a little bit to do with that, but I think I have just lost a significant amount of my base fitness. The good thing is that it gives me something to improve upon that I can see immediate results for. I still plan on doing more quality runs and staggering them with recovery. Maybe I’ll read my HR training book again to get some inspiration.

Four years worth of rebif

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Almost a $100,000 thousand worth I have pumped into my body in defense against my ms. I have to say it seems to have stopped any reoccurrence of major symptoms. But maybe they wouldn’t have happened again anyway. Or maybe diet and exercise was the difference? I wish I had security in my medication, but I really don’t. I have more hope being a vegetarian runner. And pushing myself hard. Taking advantage of opportunities, or at least enjoying them. That’s the better medicine.

The choice to switch to the oral meds – fingolimod – has been an interesting one. I’d love to ditch the shots and the excess shipping (almost 50 giant styrofoam coolers) but I think (and so does the nuero) that if treatment is showing success why change? I suppose someday I’ll be on it so why not get started now? I am pretty sure it would be effective for me, but would the change of medication, the actual transition have any worsening effect? Would the pills only come in non-vegetarian gelatin based capsules? Would some aspect of the pills require some gigantic shipping method that dwarfs the rebif styrofoam?

I have had some skin reactions recently, more than just the bruising. Itchy area, general soreness in the shot places and what looked like a small needle infection on my back right side. I moved the spots I normally inject in the area and skipped a cycle. Seemed to clear up. Today I did it in the back of my left arm, a painful one but quick. The backs of my arms seem to be the most painful of all the recommended spots. I have thought about skipping the arms but I want to make sure the other areas don’t get over used.

I didn’t run again today. I’m having some issues with consistency lately. I’ll get better I know it. I am really tired of running in the cold I am ready for some warmer weather.

Good week of running

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After the 5k last Sunday I recovered reasonably well. I was still super drained from the show I did the night before. Speak of, here is a clip fro the show (that’s me on bari sax) Dance Floor 2011. So I managed to run Monday and Tuesday, then took a couple of days break before I ran again yesterday. I really feel like I should take advantage of the optimum weather right now. Cool temperatures yet still nice out. Our rains and storms will start soon and while I’ll run in that mess I still should take advantage of what I have going now.

Friday was another rebib injection and run. I find it odd that I have a nice burst of energy right after injections. All my runs that happen soon after injecting go really well. I seem to stay strong throughout the runs. I don’t have an jittery bust of energy, more like a sustained amount. I am not sure how long this feeling lasts, I would say a couple hours. But I have never really noticed an ending to the energized feeling.

I have switched shoes again and am running on my Asics Gel Kayanos. They feel much more solid than the neutral Mizuno Wave Riders that I have been running in this last month. They felt pretty good yesterday, but my feet were a bit sore.

My speed remains slow, I am thinking some speed work at the track is in order. I haven’t done that in a month or so (maybe longer). Everytime I drive by the track I am reminded that I need to go. I guess it is good to have it on a major street so I keep passing it!

rebif’s energy burst and other ms stuff

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So I have recently noticed on several runs that if I do my injection an hour or so before I go out I tend to perform well on these runs. I have done some successful LSD runs as well as fast tempo runs. Today it was just a recovery/junk run, but it went well. I felt strong throughout and my heart rate stayed really low. Today I ran early so it was a lot cooler that my runs have been of late. So that had something to do with how strong I felt.

I wonder if interferon is tested for in professional sports drug tests? So I am gonna keep an eye on this and see if my good reaction to rebif continues. As much as I dislike the injections it seems to be pretty stable with me so no gilenya for me yet.

The weird on again off again feelings in my thigh are not bothering me at the moment, I think the medical marijuana has a lot to do with it. I tried doing a massage on the muscle and got some really painful tingling. Bu then it goes away. Sometime numb, sometimes nothing I notice. Another weird ms thing.

I am surprised how well I have taken the heat this summer. My days of getting one of those cooling systems for runners my mom found are in the past, at least for now.