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 Post - Body Screams for Mercy

I knew going into to 2014 that the end of April and beginning of May were going to be busy and stressful.  Normally I know it would likely impact my thyroid and adrenals and that I would coast into May on fumes.  Being diagnosed with MS seems different, as even though I will likely struggle with my thyroid and adrenals I had finally somewhat figured out what I need to do to keep from tanking.  With MS I am starting at the first chapter of a book that hasn't been written yet.  I don't know what the beast will throw at me.  So far it has been numb hands and feet, which got worse the last 10 days.  Mild headaches from my meds actually dissipated the last two weeks with all the stress but are back hammering me in the head this morning.  The adventures of bladder control and three times a week injections (with an ice chaser) plus the joy of workout related flare ups (the creeping tingles) these things have all shown themselves and I am adjusting.  Photo below is one of the injectors I use to take my meds.

The last two weeks of April were busy at work kicking off a new project with a new contractor team.  As the program chair I also had a lot of program changes coming in for the 2014 GIS for Transportation Symposium.  So heading to Vermont the first week of May for this international conference with over 350 people, and four tracks of talks over three days I was already stressing.  The conference was wrought with constant program changes unlike I had experienced before and this is my fifth year working on the program.  Not sure what the deal was as we are pretty regimented in our protocols but just a lot of people being unprofessional with last minute decisions.  I found myself sitting in sessions getting texts and emails with more and more changes and that drove me to my room many afternoons to lay down and have quiet conversations or naps.  I came away from the conference having gotten enough sleep all but one night, minimal drinking and a pretty health intake of quality food.  I even got three short and sweet workouts in while I was there.

Of course then I get back to Iowa and the next day went to Girl Scout camp with nine of my troop of fourth graders.  We had preplanned all the food and another mom made that happen for us so I basically just had to show up at the drop off spot and go have fun.  We had a great time of hiking, archery, fire building, camp stories and even got some decent sleep.

I got home from camp and the family thrust Mother's Day upon me.  To top it off Joe and I had a huge fight which is pretty rare.  Monday night we had JJs preschool program and Tuesday night I had my triathlon team kick off gathering and by Wed I hit a wall.  I normally stand at work part of the day as my computer is on a stand that goes up and down.  By noon I was forced to sit.  Thursday morning I could barely drag myself out of bed, but I did it anyway because that is how I am.  I spent the whole day sitting, very still, wishing I was home laying down despite being quite productive.  That night I took Abby to soccer and spent quiet time journaling.  By Friday morning I was feeling only a little bit better and managed to get through the morning before finally going home and taking a nap.  I knew I had to go serve dinner at the soup kitchen Friday night and volunteer at a triathlon on Sunday plus time at the soccer pitch Saturday morning.  The nap Friday helped me.  I started Saturday with my forth day in a row with no exercise which was making me stir crazy!  I had a lot of fun on Sunday at the triathlon serving water with my kids and came home for a rest before spending a little time in the yard.

By now you are probably thinking "what are you doing Shawn!!"  Yeah me too.  When fatigue hits me (not something that is new to me unfortunately) I feel like I have led in my arms and legs.  Even the slightest effort, like holding open a book, or taking a step require the most focused effort.  All I want to do is lay quietly and watch a program on TV or sleep.  All the while the things I know need to be done are eating away at me.  I am terrible at being idle but I clearly need to work on reprogramming myself.  My friends with MS all said that when fatigue hits I need to listen.  I was completely overwhelmed by the intensity and duration of this round.  Things are slowing down for me now, my list is still long, and I get my temporary summer friend (a beautiful new specialized racing bike) tomorrow so I hope to get back to training very soon.  I did go to my core class today and stayed for the five minutes of corpse pose at the end.  It went way too fast, so with that, I will try to work in more down time, ask for help more, and keep trying to figure out how to manage my stressors.  As always thanks for reading.