World MS Day (March) - Multiple Sclerosis Update - 2026

Another year has gone so new labs and MRIs are done to assess what is going on with my Multiple Sclerosis.  From an MS perspective my labs are good so I am tolerating my MS medication well, My MRI scans are showing stable no new lesions on my brain. The brain marble didn't grow as much this year but they say the exterior is getting warbly and still recommend brain surgery in the next year or two so yay.

The last year of run and triathlon training has kept most of my symptoms in check. That said I am still learning my limits. A week of conferencing even getting to bed early, eating right, etc still knocks me back and forces a couple days of rest and lighter schedules a week or two afterwards.

If you are new to my blog and don't know much about MS here is a 10 things to know about people like me list. https://multiplesclerosis.net/living-with-ms/world-ms-day-10-things

My two biggest issues most days are fatigue and neuropathy/dysesthesia. I am very effected by stress which causes my left leg and arm to burn and tingle. I manage that as best I can with a topical cream but it only goes so far. The more stressed I am (or the less down time I allow myself) the more it spreads on my left side and to my right hand and foot and eventually my lips (weird right) and then my mobility is impacted so it becomes a clear indicator to rest more. I still get hit by fatigue that forces my gears into slowmo and also an indicator to rest more. Otherwise as long as I pace myself my MS seems to be mostly managed and hopefully will stay that way. My MS docs thankfully agree.  They are a great team who also actively participate in MS research so when I meet with them like I did today they often share some of the things being studied and success in treating different MS issues.  Hopeful for a cure or at a minimum more treatments to reverse some of the MS damage for me and my MS friends.

MS Awareness month is in March but I was slow getting an update out with everything else that is going on. https://multiplesclerosisnewstoday.com/ms-awareness-month/

Every year I do a fundraiser with my MS DIY active team (Run a Myelin My Shoes - RAAMS) to raise funds for the MS Society to help with research and support for people like me and my teammates with MS. If you are willing and able to donate even a small amount my team and I would greatly appreciate it. You can donate by going here: https://events.nationalmssociety.org/participants/857805/donate

Here is another great MS Blog https://www.activemsers.org/

June 2026 - Ironman 70.3 Race Report – Boulder, Colorado

Bear with me this one is a bit long.  A few weeks ago, my primary care physician (close to my age) and I were talking about how I've been frustrated this spring with my body being this ever-changing alien state for me.  He's seen how hard I work at the gym as we often work out at the same time in the winter months. He made the comment that sometimes we just need to remember to be grateful that we are able to keep exercising and meeting goals even if they aren't as fast or big as they used to be now that we are getting older. And while that is true, I am not willing to accept defeat, because if I do my MS will progress and I will lose mobility and my sanity.  That said I knew I could run into issues going into this race and I told my partner/sherpa Steve that my time would likely be somewhere between 6 hours and 45 minutes and 7:30 depending on what the day delivered and my body produced.

I have been working with a professional triathlon coach since February and had a good base of swim, bike and run before that as I never took much in the way of time off after my half marathon (13.1 mile) and half ironman (1.2 mile swim, 56 mile bike, 13.1 mile run) races last fall.  It made it easier to jump into a training routine in February but seems it is now causing issues because as it turns out my body needed that rest. My run times have been getting slower and slower while my peri weight popped up to 12 lbs. gained almost overnight by December. While I have noted in another post I am now on hormone replacement therapy but that takes time to dial in and I continue to carry the weight and the training load.

So, to the race. My coach does videos on a variety of topics, and she sent me a race prep one for long course races early last week. Carb load like it’s my job 1-3 days before the race, onboard salt, hydrate and rest. The week before I was traveling for work to Salt Lake so I got some altitude training there and honestly have never had issues with altitude below 8000 feet.  I did this same race on a slightly different course in 2019, so I knew what to expect. Even so we chose to leave Tuesday night, so we had a shorter drive on Wednesday. Thursday, we drove up into the mountains for some short hikes at 14 and 13k feet and then went to see the Cubbies play the Rockies for an afternoon game on a cooler day, sitting in the shade. I continued to carb load, salt, hydrate into Friday morning.

In the swim shoot right before the start
with my hand up

For the first time ever, Friday I rode my bike to the course where I met Steve to get checked in and then did a short open water swim practice. The water was great and I felt strong and ready to race. After a hearty brunch I was chilling with books while Steve hit some local disc golf courses.

Race day I was well hydrated, had a light breakfast and headed to the course. I was surrounded by first-time racers in transition so that was fun. I went to the swim coral with about 30 minutes left after doing the dance of the wetsuit. I lined up where I guessed I’d be timewise as the start is self seed, but it turned out the lake and mother nature had other plans. We were hyped for the race and groups of four started loading into the water.  But the night before the wind, which had been on and off since we got there, never went back to off and besides people chop there was a fair bit of wind chop.  I’d say just shy of white caps, and we were swimming into the wind for the first leg. I did A LOT of backstroke and was not alone in that. I was focused on keeping my head above water to breathe and struggled to get my arms over the waves each stroke with front crawl. It was still choppy on the crossover but part way I finally got into a rhythm with crawl and had the wind with me on the way back to shore.  This was the first race ever where I seriously considered stopping at a kayak and I have had two choppier swims than this but much shorter. time around 42 minutes (slowest 1.2 miles by a lot). I drank a lot of lake and that factored in with trying to get hydration on at the start of the bike.

Pumped and ready to go

I used a lot more energy than I planned on the swim, so I took a couple of minutes in transition to take on some carbs, burp up some lake, and get ready to head out on the bike. Before I left the park, I had one of my three water bottles fall out, I stopped and switched locations so my two fuel hydration bottles were on the frame. My other cage is behind my seat but had shifted down on the drive out and I didn’t want to stop and fix it, so when I lost another water bottle before getting to the road I just left it as it was my water one and I knew I could stop on course and get that refilled. At this point I was a bit rattled and frustrated. This was not made better by a 5-mile shallow climb into the foothills with my bike in the wrong front ring. I figured out my issue at around mile ten rolling the base of the foothills, and by then was in a goove and picking up speed. 

Having fun on the second lap. 
Almost done on the bike

It is a two-lap bike course and I took on liquid carbs every 5 miles with food in between, so I stopped at mile 20 hydration station to use the restroom (still well hydrated) and take on some food carbs. I saw Steve shortly after and kept pushing hard to the next aid station where I filled up my empty water bottle with water and ate some more food carbs, then went back to it for the last 25 miles. The bike felt strong, and I never had negative head space like I usually do. I could have kept riding as I was having a lot of fun. My fueling plan seemed to work well but that all went out the window once I got back to transition for the run. Averaged just over 17 mph on a fairly hilly bike course for a time of 3:18.

It was in the high 70s by then so I put on my cooling bolero to keep the sun off my arms and keep my upper body cooler as it drops my skin temp about 5 degrees if I can keep it wet while I run. I chugged the last of my bike fuel, but I figured out quick in the run that this was not going to be my day. My runs have felt heavy for most of the spring, and I have struggled with spiking heart rates so I use a heart rate monitor for all training all runs and bikes. Coming onto the course my legs I knew I should have been around a 12-minute mile, but I just couldn’t get things going at all. 

Darn it one more lap to go.

I kept pushing forward at the pace my body wanted to go which was closer to a 14-minute mile. I walked through all the hydrations stations onboarding ice and water for my person, drinking water, and every other station took on some sort of carb as either pretzels, bananas or a gel. On the second lap I started adding a little bit of electrolytes as well but since I hadn’t trained with those, I didn’t go crazy. I even had some flat coke at one of the last couple of aid stations because at that point I was run walking just to keep moving forward. I never felt like I was bonking, I just didn’t have any gears to work through on the run. Second slowest half marathon in 15 years of racing at 3 Hours 8 minutes.  Steve and I ran through all six of my 70.3 races on the drive home.  The race reports of all of them can be found on the race reports page linked above.

I was upset when I finished as this is just another disappointing run to continue the streak this year. I know something has to change in my training, nutrition and such, but I fueled well and really didn’t feel affected by the elevation during the race. In the end I was happy to finish my sixth complete half ironman race. I had a lot of fun with the three prairie dog neighborhoods we passed on the two laps of the run. It was a beautiful day, in a beautiful part of the country, and a quick but fun trip out to Colorado with my favorite adult human. I know it won’t be my last 70.3 but I am already making changes in my training. I am planning for two weeks of very light training, doing whatever feels right each day, adding 2-3 strength workouts a week, and building in a second rest day for yoga and reading books.

Official finishing photo
 Time 7 hours and 24 minutes

Ultimately, I just want to FINISH Ironman California in October.  It does not have to be fast, I just want to make it under the 17 hour cutoff so my plan is to focus on building a strong swim and bike to try to get that part done in under 8 hours 30 minutes, and do the bare minimum for run/walk training as I can walk the whole marathon if I have to. I meet with a nutritionist in two weeks and my coach next week to restructure my plan going forward so hopefully with time I will trim some of the peri weight my body is clinging too and find my run legs again.

Always hard to find the right balance and not aggrevate my MS. For the 10th year I am raising funds for the Multiple Sclerosis Society along with my inspring MS running group RAMMS so if you want to contribute to this year’s fundraising effort, I would really appreciate the support.  Donate here: https://events.nationalmssociety.org/participants/857805

As always thank you for reading.  Get out there and chase your goals no matter how big or small they may be.

MS Update (and a bunch of other health s@#t) - Navigating out of Murky Waters.

So I think I have had a post already (https://blaesing-thompson.blogspot.com/2019/11/the-weird-of-ms.html) about my slew of not great health and stressors in my life over the last 17 months.  The latest adventures involve the edition of two new physicians, more tests, more MRIs and a new game plan.

I had mentioned about having Parathesia, a mild tingling sensation kind of like touching a low voltage electric fence, or a tuning fork after its humming, since 2007.  I also mentioned Dysesthesia that was just in my left foot for several years which makes my foot feel like it’s tender and sunburned. 

Most of the time I didn’t notice it except in the evenings or when I’d get over tired or stressed. The dysethesia spread in November of 2019 so my MS doc, who was too busy to see me, gave me a huge dose of Gabapentin and told me to ramp up and call me if I had new symptoms (uh hello... this is a new symptom).  My regular doc, who is great but out of her element with me and my health adventures added a super low dose of Cymbalta as it is also supposed to help block nerve sensations.  I had been seeing her regularly because my thyroid numbers have been all over the place too the last year.  Well it did not work and it made my Eosinophilic Esophagitis worse, and so did adding a T3 med for my thyroid!

In my November post I was working through my medical professionals and finding life to be very frustrating.  Because of my Eosinophilic Esophagitis (fancy name for food sensitivities searing the inside of my esophagus) I spent part of 2018 and all of 2019 navigating what foods upset my system and what was seemingly benign.  I worked with a very expensive dietitian who ran food sensitivity tests, as well as two allergists, and had an esophageal scope and saw a ENT specialist none of which really helped me figure out what I can and can't eat to keep from burning the inside of my esophagus and upper GI track.  The one allergist said this is normally a disease that comes up in children and by cutting out gluten they grow out of it.  He also said they are setting up a clinic to study it in children (that's super helpful) but also that it is becoming more common in adults as well.

When it is unmanaged I get a sensation of having something stuck in my throat when I swallow things especially late in the day.  If it gets totally unmanaged I get severe chest pain in the middle of my chest and back.  Once they figured out what it was and I cut out processed foods especially things with gluten (every damn thing) I started doing better but was still experiencing a hoarseness caused by mild reflux in my esophagus.  I've been a walking talking science experiment as I work through things.  Here is what I've learned... I can eat cooked cabbage but not coleslaw.  I can have baked eggs or hard boiled eggs but eggs in any other format give me horrible heartburn.  I can have super small doses of things with wheat, but add barley or some other grains like that and horrible heartburn again.  I can't have almonds or strawberries but blueberries, peanuts and cashews are fine.  These are just a few examples of me attempting to navigate things. I also have sensitivities to some of the additives that go in foods which sucks because they are in everything and reading labels is no fun and going out to eat just depresses me.  Yeah I have cried a lot, over all the food I've lost from my life because I really like food and I hate being different especially at family gatherings!!  My dietitian did her best but with the long line of issues noted in my 2019 holiday letter intro (https://blaesing-thompson.blogspot.com/2020/02/holiday-letter-2019.html) she was fighting an uphill battle.

My mom, who was back from Florida to be there for grandpa's passing right after Thanksgiving, demanded I call the Ruan MS doctor and make an appointment right then and there (took two weeks but finally navigated that process) and my dietitian and my therapist both agreed working with a highly recommended functional health internal medicine doc in Ankeny was also a good plan as they look at whole health outside of pharmaceutical based treating of symptoms that most MDs are stuck with.  So at the end of January I finally saw Dr Hughes who is amazing and incredibly knowledgeable on all things MS.  He ran labs and did double MRIs to see what is going on as my last MS doc was against that and hadn't run one in over two years.  We found out my oral med may have been a huge contributor to my GI issues as well as not working all that well since we found a new active lesion on my left lobe which is probably the cause of my dysethesia.  I nearly cried when left his office because it was such a different experience then I'd had with an MS doc the last seven years.  We are now working through the paperwork to get me on Ocrevus which is a newer infusion based med.  It may be pretty expensive out of pocket to start to working through all that (single mom, high debt load from divorce = no money).

I also saw Dr Lorentzen in Ankeny this week and she ran a bunch more tests to look at deficiencies and things we can adjust with herbs and diet to calm everything back down.  So for the first time in two years I have hope my health is finally going to get better.  I suspect there is still a bit of an uphill climb as we work through meds and such over the coming months, but HOPE FEELS SO GREAT!! 

My folks have been awesome through this as well as my great friends Adri, Lee, Bob, Lisa, Bonnie, my therapist, ad my running group, and of course my honey Steve (I probably missed a couple more but know I appreciate all of you).  One of them has lifted me up every time I fell down in despair the last year and I am so very grateful for each and every one of them.

I know that is a giant pile of blog posts in the last couple of days but thanks as always for reading.  I appreciate the positive energy each and every one of you sends me.  It makes a difference!  I love you guys and gals!!

The Weird of MS

I have had parathesia in my feet and hands most of the time since my MS diagnosis.  Parathesia is a mild tingling sensation kind of like touching a low voltage electric fence, or a tuning fork after its humming.  I also have had Dysesthesia in my left foot for several years which makes my foot feel like it’s tender and sunburned.  Most of the time I didn’t notice it except in the evenings or when I’d get over tired or stressed.  A month ago it reared up in my left hand.  I get the throbbing and burning and if it is bad more of an electric buzzing.  Washing my hand hurt as well as picking up some things. Thursday I woke up and the burning and pain had spread to 90% of my body and is more intense.

Putting on clothes and shoes, carrying things in my hand, even sitting on hard certain surfaces suddenly became intense enough to bring me to tears.  Thursdays I drive my son to band so he doesn’t have to tote his trombone to school.  So I loaded myself up which brought me to tears that I quickly managed so I could be happy mommy when I picked him up.  I got him dropped off at school and he realized he forgot his book which he set down to put on shoes, so I ran back to Joes and grabbed that which put me to tears again.  I dropped off his book and headed to my office.  I knew I wasn’t staying, but had left my laptop on my desk so it could update for a couple days.  I collected what I needed and shuffled out.

Once home I Sent a note to my primary doc and waited.  I’d had a similar pain on my lower half in 2012-13 timeframe before my official MS diagnosis which she thought was shingles. (Always suspected it was my MS looking back).  She passed the buck and sent me to my neurologist who quickly confirmed my fears.  Dysesthesia!  No real treatment just Gabapenten which is a nerve blocker of sorts.  I had some from when I had shingles last spring so started taking it Thursday hoping it helped.  So far it’s taking the edge off, but little things like a hug, or putting clothes on and off, sitting all make me cringe.  I’ll still willingly take on any hugs (don’t worry if I cringe) 



I did go swim on Friday as I needed a little fresh air, and ran 4.4 miles on Saturday.  I noticed however that not only is my skin sensitive and burning, but it’s making my muscle response in my left leg feel different when I exercise for more than 20 minutes or so. It’s Almost like that leg is fatiguing faster and I have less control of it.  I'm also noticing my recognition of being cold on that side is also limited since the skin feels like it’s burning warm. Neurologic signals in my body often lie and that lying is running rampant on my left side now.

So what does that mean for the future?  I’ll keep praying each day that the symptoms subside (MS is weird like that as symptoms can rear for weeks or months and then disappear again like a sleeping dragon).  I’m increasing my gabapenten dosage per my neurologists recommendation, and I’ll start a several month round of CBD oils once my supply arrives.  I’m also planning to cut out excess sugar and the last of the processed foods o still eat between thanksgiving and Christmas to see if that helps too. Hopefully with that, regular exercise and better sleep things will calm back down.

In the meantime I’ll leave you with a nice article about Dysesthesia.  I’ll be okay either way because there are so many great reasons to keep on moving. 

Hope you all have a wonderful thanksgiving!

https://www.healthline.com/health/dysesthesia

MS Update - A New Ride in 2019

Well it is that time of year again.  I am registered to participate in an MS Bike ride.  I am not able to do the Iowa ride this year which is fine as it is only so exciting after so many years of doing that one.  So I signed up for a two day ride in early June only to learn that is the week I am due to close on the houses.  So third time’s a charm, I’ve signed up for a one day ride in May in Minneapolis (I hope it isn’t still snowing up there).

I have a couple of friends interested in riding with me but would love to have a few more people on our team.  The team sign up is here: http://main.nationalmssociety.org/goto/dream_team

As you know the MS ride is important to my family as I was diagnosed in 2013/14 and these MS rides are a major fundraiser for supporting the great work of the National MS Society.  Their big push lately is supporting research for people with progressive MS like some of my friends. They are also supporting research in mylien repair which can be of direct benefit for people like myself.

I know on the surface I look like I’m doing well and getting around fine (well maybe not on weeks when I am having a flare up but thankfully those are not frequent.). I still struggle with neuropathy (tingling) in my hands a feet, brain fog and slowness as well as occasional bladder control issues.  I’ve figured out things to help me when those get overwhelming and most of the time I do pretty good (so long as I manage my stress that is).  I am actually struggling with intermittent flare ups the last five days so I've been

taking time to rest since I will be on the road seven working days starting next Monday.

Anyway the purpose of this blog is just to do a gentle ask, if you can afford to help (even the smallest donations can make a difference if many people give) to send a donation to the MS society on my behalf and support the great things they do for people like me.     http://main.nationalmssociety.org/goto/ShawnBlaesing2019

Thanks for the consideration.  Sending you all love.

MS Update - Another year and still marching

My family and dad around mile 10
overlooking the high trestle bridge

Just doing a quick update of the status of the MS adventures.  For those friends and family on Facebook I'm sure you saw that my whole family and my dad did the MS bike ride with me in June.  Joshua was riding a 20" bike to the ride was pretty casual compared to what I am used to. It was perfect weather and we even ran into the Dream Team, which is my fundraising team, at the turn around.  I'm just wrapping up the fundraising from that so it isn't too late if you had planned to make a donation the MS Society.  Just use this link  http://bndfr.com/6M5h9  
Thank you to the following 2017 donors: My folks, George, Bill, Theresia, Sheila, Ingrid, Shirley, Kathleen, Judy, Joe, Aaron, Blair, Julia, Henrieta, Mary, Mitch, Rhonda, Cindy, David, Amy, Barb, Bryan and Bonnie.  Hopefully I didn't miss anyone.  Many of you are repeat donors so be watching your mail boxes for a thank you! Yes I do believe in the power of snail mail.  :)

My family with the rest of the Dream Team
at the turn around point in Woodward

So for the update... I had my yearly check up with my neurologist today.  He is pleased I'm adjusting well to my new medication. For those of you just getting up to speed on this, the injection meds I was taking the first three years nearly took me out last summer.  I spent two months off MS meds and then started a twice a day pill in October.  Let's just say that I had a rough start with the standard ramp up on that, but after a couple of dosage adjustments we got things on track.  The hardest thing about this new med is that I take it twice a day after meals which means after breakfast and after dinner.  I can't take it on an empty stomach, and while I rarely miss a meal, it wasn't easy to find the right combination of vitamins and food to keep the GI and tingling side effects at bay.  I think I have it pretty well figured out now so the hardest part is remembering to take both pills.  I do good with the morning one but occasionally miss an evening one especially on the weekends.

My neurologist also felt like since none of the damage I already have from MS is getting worse that unless I have a major flare or new symptoms between now and next year's appointment that I'm in good shape.  He appreciates that I have regular fitness in my routine and continues to encourage me in that area.  That doesn't mean I'm not effected by MS every day but that I have it pretty good in the grand scheme of managing a chronic illness like MS.

My family and dad around mile 14
on the High Trestle Bridge

The other thing to note related to my MS is that I have finished my clinical trial at the University of Iowa.  I was assigned to the swank diet over the Wahls diet.  This meant that for 24 weeks I had to eat foods only in low saturated fat as well as a healthy dose of grains.  I really missed chocolate and pizza with real cheese.  I'm not sure I can say I missed much else, but it is nice to be able to each what I want again.  the hardest part for me with the diet besides writing down everything I ate for 26 weeks (had to do this twice in the first 12 weeks where I ate normal also) of the was all the grains.  I'd been eating mostly gluten free for two and half years going into the study so that was tough.  I also ended up gaining eight pounds...  I blame the carbs, and still doing rehab from my summer injuries, compounded by moving to a new house and readying a house for sale.  Working hard to get back on track now and will do a deep dive in food management process in August.  I think I will end up doing some sort of combination between low saturated fat with fruits, vegetables and lean meats. 


Either way, I'm managing for now and grateful for every day that I can think straight, make it to the bathroom on time, and be active in my day.  So long as I take care of my body and my meds continue to work, I should be able to maintain my mobility long into the future.  Thank you for everyone in my life who remind me to slow down and make time for myself now and then.  Until next time I'm sending love out into the world so have a great one!

Updates - MS Adventures (Written April '17)

Well I think the last time I wrote about my MS adventures I had just survived the adjustments to my new MS meds.  I think I have things pretty much figured out.  The side effects from my new meds while more pronounced are far less dreary then my old meds and just pop up for a few minutes when the meds "kick in".  I go in for labs in the next week or two to make sure my meds aren't messing with by blood work so hopefully everything will be good and I can continue to take this one for a while.  I know there has been a lot in the news about a new MS med that just came on the market and should this one (called Tecfidera) not work out I will definitely be looking closely at the new one.  One thing is for sure, I do not miss the injections I used to have to do.

As you may have noticed with the last post things have been pretty busy for our household.  I can't say this hasn't effected my MS.  I've had some fatigue and taken a day or two of forced rest but so far am hanging in there.

In other MS related activities, I am still doing the MS clinical research trial.  If you'll recall I volunteered for a research study looking at people like me with MS and how two popular MS diets effect fatigue.  I started my study diet right before Christmas, but ended up being assigned one, while quite different from how I had been eating going into the diet, that ended up being easier for my family and I to manage without a lot of change for them.  I've also had the joy of spending time with my brother and sister in-law (and being able to closely watch her pregnancy progress) during my medical visits to Iowa City.

During my visits they review my food logs as I have to track everything I eat for the last 25 weeks of the study and for three of those weeks I also have to weigh everything I eat and record it in great detail.  They also run a battery of fine and major motor skill tests, vision tests, a lot of blood and stool collections.  As a person with a science background I wish I could learn more about the data I create but since it is a three year study they can't even share blood work results.  I am still glad to be participating especially if it will change the way the medical profession treats MS since I've always felt treatment should be more holistic and less pharmaceutically based.

The diet has been a bit of a challenge while traveling for work and family business the last few months but all in all I feel I've been true to study requirements and on my latest trip I found servers were willing to accommodate my odd requests like no cheese on my tacos and regular toast versus French toast (which would have put me over my egg allotment).  As for whether or not I think the diet is helping me, well I'm not sure what the science shows, but I can't say it has made me feel much better day to day.  I'm certain my stress has skewed the data a bit.  I do think there are some things I will pay closer attention to going forward once I complete the study, so I suspect there has been some benefit for me despite them not being as obvious as going gluten free was for me.

I am grateful for all the accommodations my family has made to allow me to participate with minimal issues.  All in all, I'm pretty blessed that most days I can roll out of bed and go about my day without much slowing me down.  I am grateful for my MS community and family community who help keep me humble and grounded but also give me hope.  So with that I'll wrap up this post by giving you all a heads up... I am signed up to ride again this year with the MS Dream Team for the MS Society.  I'll post a link below if you are interested in supporting the work the MS Society does for patients and families affected by MS.  Until next time, thanks for reading.

Oh... one more thing.  The MS Dream Team rides again this June.  Consider donating to the MS Society and sponsoring me and my team.
Thanks.

MS Update - Changes abreast

Every year I go in for blood work once or twice.  My regular doc checks things like my thyroid and cholesterol (both doing just fine) and my neurologist checks my blood - white blood counts (what fights off illness) and my red blood counts.  My most recent major work up was at the end of June.  My blood numbers were off so we made a plan to test again in a month. I've had issues with my White Blood Count (WBC) in the past but the numbers have also recovered in the past. 

At the beginning of August they ran them again and they were even worse.  My WBC kept dropping.  It had been low in the past but had always rebounded.  This time it got worse and a bunch of other results went with them.  My neurologist was concerned and asked me to run them again later in August.  

I had two weeks off my MS meds to allow me to go backpacking in Isle Royale (see my nature girl post) and not have to mess with them.  My meds are a refrigerated injection that I do three days a week. I got back from the wild and had lab tests a third time... AND my labs are still in the toilet.  Certainly explains why I've felt tired.  It appears my meds are causing a bit of anemia in my bone marrow on top of depressing my immune system.  :(

So things I don't miss about being off my meds... No med muddle the day after, no ever weighty depression, no migraines, and when I've been cold and damp no Raynauds just to name a few.  My seasonal allergies and inflammation are still flared up but I am guessing it is because my immune system is a bit depressed.

So what now??  I wasn't real excited about doing another injectable med, so we decided to transition me to Tecfidera which is an oral capsule that I will take twice a day with meals.  I have to stay off my meds 2-3 more weeks to see if my blood work rebounds.  It if doesn't then I will have to see a blood specialist to see why.  I can't start my new MS meds until my blood work stabilizes and I have been off my current meds for a month.  I'll have to find a way to manage my stress during this time and rest to give my body time to recover.  Time will tell as I go through these adjustments over the next couple of months.

On another note I was accepted to be part of a clinical research study looking at two specific diets aimed at reducing fatigue in people with Relapsing Remitting MS like mine.  I start the study in mid September and will be assigned a a specific food plan between Thanksgiving and Christmas.  The science is important, but I know it will be hard work to stick to the plan assigned to me so keeping my family and I in your positive thoughts over the next 6-8 months would be greatly appreciated.

MS Bike Ride 2016

So it is that time again for my yearly check with my neurologist and my annual foray into the wilds of Iowa for the Multiple Sclerosis Society MS Ride.  This is their biggest fundraiser and they raised over $100000 this year just from the Iowa ride.

It was going to be a hot and steamy ride this year, and my dad was not training for RAGBRAI so we opted for an 8am start.  I got to chat with a couple of my MS activist friends who also have MS and saw Dr Hughes (the leading MS doc in the state of Iowa) cutting a check for $100 to get signed up for the ride and clear his donation requirements.

Hubby Joe, myself, and my dad Joe at the start of the ride

The ride to Slater was nice and my dad and I caught up on our adventures since our last visit.  Joe rode along behind and the morning was lovely with a light tailwind but a bit sticky especially as the heat was rising.  We made it to the Slater oasis point and refilled our water bottles and got a snack, etc. and then rolled back south to Ankeny.  

Since we did this ride the weekend after my half Ironman I was feeling the toll of a bit of a strong headwind in the quads and was glad we only did 25 miles that day (did I mention I was sore from walking the 1/2 marathon the weekend before... totally uses different muscles to walk that far.)  Anyway it was a great ride with a couple of my favorite guys.

Here is a shout out to all the wonderful people who made donations to the MS Society on my behalf (I will add to this as more come in): The Schneider Family, Kate J., George K., Judy and Gary E., Teammate Greg G., collegues Matt H. and Bob Y., and family members Becky B., Sheila C., Mary and Dean L., Gloria M., and my awesome parents Joe and Gail.  Written thank yous are coming your way. It isn't too late to donate (July 29th is this year's cutoff) so go to this link today  and help researchers find a cure for MS.

As for my annual check up with my neurologist he said keep doing what I am doing.  He also said I can take a two week med break in August when I go backpacking in Isle Royale with my cousin.  It will be a nice break... and in bonus news one of the MS meds in trials right now just got a fast track with hopes for release in FY2017.  It is a different kind of drug and I am very interested in this one.  Last bit of MS related news I have been tentatively accepted into Dr Wahl's clinical nutrition trial to look at how two documented MS food plans effect MS fatigue in people with the kind of MS I have so I am super excited about that but I expect Thanksgiving and Christmas to be a bit of a food challenge yet again.

Until next time... thanks for reading. Have a great day!!

MS Update - The Invisible Enemy

Life has been roller coaster of ups and downs since my last post. We had the holidays roll through, the start of a new year, and all the other activities that fill up a week and leave me mentally begging for time in a quiet cabin with a pile of books and a yoga mat by myself. But alas the demands of life (work, kids, spouses, pets) while wonderful and things I am grateful for continue to take away from things I want to do and downtime my body needs.

The funny thing about MS is that unless your disease has progressed, to bystanders, it is hard to tell there is an invisible enemy dragging you down. The last week has been tough for me. I know I have mentioned in past posts that what I struggle with what you can't see. The bladder urgency issues that mean I can't wait until the last minute and if you see me racing towards a restroom please get out of the way. Of course the restroom in my building is closed for three days so I have a flight of stairs and an extra 50 yards to go to get to the closest one. Fortunately bladder issues come and go so I may have a few weeks or a few months between bouts.

When I am having what I call a flare up, I can also have muscle weakness on my left side. This effects my walking gait a bit and can make me a little wobbly. It also effects my hand strength and my ability to grab and hold on to things with my left hand. During a flare up I also get incredibly tired. I take an herb called MitoQ that helps with that so the flares end up being less intense and not as long but part of that makes me worry it allows me to push too hard.

I won't stop taking it though because my most frustrating unseen symptom is what I call swiss cheese brain. Yeah I'm getting older and yeah some of this supposedly comes with the territory. I guess I disagree... let me give you an example. I had three weeks of no herbs between refills as my MitoQ comes from New Zealand. I was in a meeting at work and my boss had to step out so he handed me the dry erase marker to keep writing down ideas on the white board. I was in the middle of spelling a word and completely lost the last five letters. I had to ask my coworkers for help finishing (yes I am a bad speller, no that isn't was going on here) It seems my brain is often on a five, ten or thirty second delay so patience is important if you are waiting for me to extract something.

The National MS Society has done some great videos on invisible symptoms so if you have the time and are interested in learning more check out the links below. I just wanted to give you all something to think about today. What you see on the surface doesn't always paint a clear picture of what is real. This is true for people who struggle with MS, cancer, depression or any other illness that doesn't always leave a mark on the surface. Take the time and patience to learn about what is real. As always thanks for reading... now if I could just get the kittens to let me sleep until the alarm goes off that would be super!

Here is a scientist take on MS fatigue I thought was interesting... “Fatigue is something we all have, but lassitude is related to myelin damage itself," Burks says. "The myelin’s job is to insulate the nerves so that messages get through quickly. When the myelin is damaged, the messages don’t get through as quickly. It takes more energy, and the energy that it takes can cause people with MS to get overly tired.”

http://www.nationalmssociety.org/Programs-and-Services/Resources/Invisible-Symptoms-in-MS-Part-1-(video)?page=1&orderby=3&order=asc

http://www.nationalmssociety.org/Programs-and-Services/Resources/Invisible-Symptoms-in-MS-Part-2-(video)?page=1&orderby=3&order=asc

http://www.everydayhealth.com/hs/multiple-sclerosis-symptoms/invisible-ms-others-cant-see-symptoms/

MS Update - The good and the even better

these are pretty darn nice seats

A couple of great things to share today. The last couple of weeks have delivered some happy surprises.  The first one was winning two great seats at the ICubs game and being able to go with my family and my wonderful Aunt Joyce.  The coolest thing was I got to throw out one of the opening pitches.  As a result I got to play catch with my kids and Joe to make sure I could still throw a ball 66 feet.  Needless to say I got the ball from the mound to the box just right of the plate so not too bad for someone who’s pretty rusty these days.

throwing out the pitch

The other pretty great news came yesterday.  It was my annual meeting with my neurologist.  Despite feeling like my appointment was rushed, along with the “ride in the can” (35 minutes in an MRI machine) the outcome was worth the effort.  My neurologist was beaming when he came in.  It looks like there is no active disease progression showing in my MRI ( had a lot Feb 2014). AND my Doc said I have an almost a 50% reduction in the lesions on my brain too, so something I am doing is healing some of the damage (not that my symptoms are resolving) that was done from my MS and the med (according to the doc) are keeping me from relapses.  Only bad news is he won’t let me go down to the half dosage so I am stuck with yucky injections three times a week at the current dosage which makes me feel crummy for a week usually once a month. Even so my mom, my boss and my hubby all said it was worth celebrating so we got a couple of tasty sandwiches and a refreshing beverages. Yum!

At the MRI appointment the tech asked if I wanted to take the elevator or the stairs and I told her as long as I am able to take the stairs then the stairs it is.  Then, I was at the pool yesterday in between appointments (shocker I know) and a disabled man was struggling across the deck and I am thinking in my head that that could be me some day.  I stopped in my tracks and asked him if I could help as he was trying to get a lifeguards attention.  All he needed was a seat so I brought him one.  Every day am thankful for my mobility and my mental capacity.  All in all I am feeling pretty lucky.  Sending thanks into the universe.

One last cool thing is our butterfly garden has has some activity. We have monarch butterfly caterpillars working on their bush so excited to be doing our part to continue to support their population.

As always thanks for listening.

Bike MS

Just wanted to do a quick recap of my bike MS journey with my dad.  I signed up to ride on the Dream Team lead by Charlie N whose wife has been living with MS for many years.

My dad Joe and I at the start

 The other thing that was neat about fundraising with the Dream Team was Charlie's decision to try and find a person who has MS for every mile we rode.  We were looking for 100 people.  In the end we ended up with 88 (if you know a few more people let us know as our goal is to have 100 by next year.)  He called the effort Mile and Miles 4 MS.

As you may remember I did the MS ride last year with Joe.  We did a quick 25 miles on roads in the Ames area.  This year the ride was out of Ankeny and all on trails.  I fully expected I would be riding alone as most of my team planned to do the 100 mile route.  I mentioned it to my dad, husband and a few of my training buddies.

In the end one of my Marching Band alumni friend's signed up to do 25 miles and we met him at the start.  Even better my dad, who is riding RAGBRAI later this month, decided to keep me company on the ride.  We planned to do the 50 mile ride and just go easy and have a nice time together.

A week or so before the ride one of the MS Society liaisons from the metro reached out to me to introduced herself (Molly) and we had a nice email exchange telling our MS stories.  It was great to finally meet her at the ride start.  As I mentioned last year one of my goals on these rides is to make new MS friends.  I did have the opportunity to meet a lovely couple when we were at Woodward.  As you may notice in my photo some of the riders with MS have a jersey like mine that says so.  I met John from Humbolt as we were getting ready to make our return trip to Ankeny.  He is also new in the journey but was enjoying the day on the trail like we were.

It was perfect weather.  The trail was full of RAGBRAI trainees and MS riders and it was a friendly group of folks we encountered.  When we got to Slater around mile 38 we ran into my MS friend Bob and a couple of other people from my MS support group who have progressive forms of MS.  It was great to see them out on their trikes keeping things moving.

We wrapped up our ride, very hungry, at the Firetrucker Brewery in Ankeny.  My band friend pulled me aside when we got there to meet and interesting couple Dave and Koreen (who has MS).  They are doing MS rides in every state and Iowa was their 38th state.  You can check out their FB site here: https://www.facebook.com/pages/David-Koreen-Bike-the-US-4-MS/220645411329692?fref=ts

All in all it was a great day.  There is still a couple of days left for folks to make a donation to my team's fundraising effort.  If you are interested check out this link.  Thank you to all the wonderful friends, family and coworkers who donated this year.  With your help we will find a way to repair, stop and cure MS.

MS Update - Being my own advocate

Quote for the month – “Run when you can, walk if you have to, crawl if you must; just never give up.”

~ Dean Karnazes

This week I had the pleasure of going to an MS talk hosted by a couple of MS drug companies.  I was excited about this one for a few reasons: it was in Ames (most are in Des Moines), it was a presentation by one of the best most respected MS specialists (neurologists) in Iowa, and it covered the use of MRIs with MS treatment.

So here is a little back story about a conversation I had with my neurologist here in Ames in February.  Most of the MS survivors I know get MRIs at least once a year if they are in the first 5 years of diagnosis so I inquired about why my doc didn’t refer me for an MRI as it had been a year since my last one.  My last MRI showed active disease growth which is one indicator of disease progression.  He said as long as I was wasn’t experiencing any severe new symptoms that I was probably responding well enough to the meds I was on but he said if I wanted one the next time I saw him to ask.

The other thing worth noting is the meds I take three times a week often make me feel crummy for a week each month, so so for a couple weeks each month and generally good for a week or so each month.  They give me headaches and make me achy that generally over the counter meds don’t seem to help.    I mentioned in past posts that it is tough to take a med to keep from having a relapse that does permanent damage when the side effects make  me feel kind of crummy.  At the presentation the neurologist mentioned that the drug I take has a lower dosage option.

After the meeting I touched based with my neurologist about doing an MRI before my next in August and it is all set up now.   Hopefully the scans will show no active lesions and we can talk through going to a lower dosage which has the potential to make me feel better more often.

Several of you donated to my ride last year so I wanted to let you know that I am riding again this year.  My goal is to ride 50 miles on June 27^th.  The link below is where a donation to support MS Research can be made on my behalf if you are interested and able to do so.

http://main.nationalmssociety.org/site/TR/Bike/MNMBikeEvents?px=13447566&pg=personal&fr_id=25324

This is just a small step to reaching my season goal of racing in my second half ironman triathlon (1.2 mile swim, 56 mile bike, 13 mile run) on September 13^th. 

World MS Day

I am pretty lucky.  My MS does not limit me as much as it does some of my MS friends.  I did have an issue that caught me by surprise today.  I got to my gym for yoga class and found that they had moved it outside to the large area they use for the trainers to do fitness outside.  The space is huge and covered with a black carpet.  It is all out in full sun and it is 80 degrees today with humidity lingering.  I took one look at that and left because the whole class was getting set up and while they offered to go back inside it didn't make sense to move everyone for me.  It isn't worth the risk of a temporary relapse for me to stay and attend.  Two years ago I would have though the whole situation great but today was a no go and the whole episode had me pretty emotional at the time.  Tomorrow I hit the outdoor lap pool instead for a nice cool swim.  Check out more about World MS Day

So with it is time for my yearly ask in support of MS research.  

last year the MS Society provided nearly $30 million towards research for the development of better treatment options (there aren't any) for people with progressive forms of MS.  They also support research efforts towards finding a cure for MS.  Any research done towards MS may help find a breakthrough in other neurological illnesses like ALS, Parkinsons and Alzheimer's.

So I put forth my (2nd ride year) annual call for support to the MS Society sponsored research as I vow to ride 50 miles with the Dream Team in late June.  If you are willing and able to donate you can submit online below, or mail a check which I will hand over in late June.

http://bikemnm.nationalmssociety.org/site/TR/Bike/MNMBikeEvents?px=13447566&pg=personal&fr_id=25324

If you want to join the team and ride with me I would love that!  It is $30 to sign up and then help raise $100 for research funds.  Because I don't want a life limited by MS.  I want to do yoga outside again!

On another note:  Here is something fun for adults and kids alike.  
http://www.muminthemadhouse.com/2015/04/19/free-colouring-pages-for-adults/
My favorte is the "Today is going to be awesome" one.  Yes I printed it and yes I plan to color it later but I won't take it too seriously.  :)