A look to the future - Tough decisions ahead - May 2021

Well, I said there would be several updates in May.  This one is loaded with intrigue and science... or something.  The last 15 months have been challenging to say the least with a pandemic, kids and work from home, new normal after new normal after new normal (yes I have a blog post coming about that too).  

Being grumpy at people not wearing masks.  Being grumpy at people who refuse to get a vaccine.  Stalking vaccine sites to try to get a vaccine appointment.  Trekking all over the state to get Abby and I vaccines.  Trying to run the numbers for when the last possible day I could get a vaccine and still be in my 60 day window for getting my MS med will still having 4-8 weeks time after the vaccine before I needed to get my MS med, and now after all that not even knowing if the vaccine will even work for me (MS research with the rNA based vaccines like Pfizer and Moderna show a 22% efficacy rate for people who take Ocrevus).  I may be wearing a mask for a long time yet.  Head spinning yet?

Well mine is... let me just add to the excitement right now...  My MRI in March, while showing my MS to be stable (no new or active lesions on my brain or upper spine Yay!) also showed I have a golf ball sized brain tumor.  Right now that is an okay thing.  It is not cancer, and is not growing very fast (Although I plan to have my neurosurgeon look at my past MRIs to see if he will assess how fast it has been growing since they started doing regular MRIs in 2014... I'm a data girl living in a data driven world...)   https://www.mayoclinic.org/diseases-conditions/meningioma/symptoms-causes/syc-20355643

Apparently my old MS doctor knew I had this thing in my brain but never found it to be worth telling me about (I read it in my chart a couple of years ago and had to look up what it was... needless to say he is no longer providing me with care.) I was thinking this was just 4-5mm in size but when the neurosurgeon showed me the MRI it was WAY bigger then I thought.  They know it isn't cancerous because it has feet on it that follow the surface of my brain.

Anyhoo, this doesn't mean I am out of the woods.  The problem is the part of my brain this growing mass is in, is also the same part of my brain that can cause symptoms identical to my MS.  Yes that is right... so how does one know if the golf ball in there is causing a malfunction or if my MS is.  Ah, well the Doc said if the symptoms come on like an MS flare, but don't go away then it is probably the golf ball growing further into my brain.  He said I am young and that he is happy to pop in there and get it out for me before it causes more damage.  I was all, um we are talking about major brain surgery yeah, so I think I will just wait and see for bit okay thanks.

The obvious risk with the wait and see option is that if it grows into an important part of my brain and starts causing obvious problems, then it will be harder to remove.  So the place I am at right now is to see if my old doc will send my new doc my past MRIs so the surgeon can see how rapidly (or not) it has been growing the last seven years and have him assess at that rate when it might start causing problems.  I am a data gal and I need more information before I let my perfectly lovely neurosurgeon go poking around in my brain.

Which reminds me of this blog post from President Barak Obama on how to approach tough decisions.  I am asking the tough questions, getting more data, and weighing in with people I trust.  https://barackobama.medium.com/how-i-approach-the-toughest-decisions-dc1b165cdf2d  

And then I just keep marching because LIFE COULD BE SO MUCH WORSE, which brings me to this blog post from MS News about looking forward.  

https://multiplesclerosisnewstoday.com/news-posts/2021/04/12/pandemic-vaccine-looking-ahead Most of my family and friends are now vaccinated or mostly vaccinated so I am starting to look outside my bubble.  I have a birthday in a few days and I have invited some of my vaccinated friends to come spend a couple of hours at my place.  So I have this timeline driving me to clean my porch, parlor, table, counters and get rid of clutter.  It has been two years since I moved in... if stuff is still in boxes I don't really need it do I? Free stuff table in my future... after Mother Nature finishes watering all my plants for me.

I am looking forward to some mini vacations in nature, and time spent with family.  I am spending A LOT of time in my yard planting more things that will make me smile when they grow and bloom.  And I am doing what I can each day to live my best life when so many days this last 15 months feels like we are all just surviving not thriving.  We got this ya'll (I am working hard to change my mindset to the positive).  I look forward to the day when I can give everyone hugs again so here is hoping they are just around the corner.  Be safe out there! 😍🙋

MS Update - May 2021

March was national MS Awareness Month so I thought I would give you an MS update (got distracted so now it is May, and I will have 2-3 updates to share this month).  I started MS Month with an MRI to make sure that my new MS med Ocrevus is working.  If you are following along you know I started this new med almost a year ago.  It requires me to go to an infusion center for day long treatments.  I had 3 infusions in 2020 down in Des Moines all during covid and I don't much look forward to those days because they are long and pretty noisy.  I had my first infusion of 2021 this week and it was way better with noise canceling headphones. I took Aleve with me as the first three infusions caused a pounding headache afterwards but I didn't need it.  I think listening to Spotify on the headphones and reading a book about nutrition in the morning, and napping when the Benadryl they give me kicked in left me in a better mode and no headache this time.  I did have weird weakness in my legs after I finished but it didn't last too long.  

The MRI showed I appear to be responding to the new meds and am for the most part tolerating it fairly well.  I've been a little off the last couple of days since my meds but hard to say if it is the meds fault.

The last 15 months with working from home, kids schooling from home, trying to deal with the stress of a pandemic has been pretty hard on my MS.  Stress is a HUGE factor to how I feel and how often and long I have flares.  I've asked less of the kids because we are all just trying to get through the school year, but being the only adult in the house most of the time I carry most of the burden of tending animals, getting us all fed, cleaning house and trying to get us all where we need to be.  I'll be honest it's been a lot.  Right after that MRI I had a ten day flare with bad fatigue, brain fog, and pain.  Those usually only last a day or two and settle down when I rest but this one didn't and I'll be honest that stuff scares the crap out of me.  

I never know if the flare just won't go away so it is just a reminder that I have to take care of myself and manage the intensity of my day.  I have a regular counseling session to let go of some of the weight.  I've been trying to swim, walk and run regularly, and trying to keep my workload balanced but it still isn't easy.  We all need to listen to our bodies, feed them right, rest when we need rest, talk to someone when we feel heavy, and look for opportunities to appreciate all the good we have in our lives.

We all need to just keep doing the best we can and be kind to each other.  Until next time thanks for reading.

MS Update - Infusions and CoVID

So 2020 has been a raging dumpster fire across the US but I’m feeling fine.  Here is where I last left you in February.  https://blaesing-thompson.blogspot.com/2020/02/ms-update-and-bunch-of-other-health-st.html I was still navigating food sensitivities, mineral imbalances and starting a new MS med.  Add hiding out from COVID (my dining room table is my office now) middle school tutor (my youngest schools across the table from me every other week) the s$%&show that is the government, plus racist dialog/unrest and the last seven months have been a lot to take in.

Today I am hanging out in the infusion center down at Mercy Des Moines spending 8 hours pumping chemicals into my body to keep it from revolting on me.  I go every six months with this new med.  I had an MRI four weeks ago, and it showed the lesions that formed last fall are healing (YAY!) and that a lesion that formed before I started Ocrevus (late March) is no longer active and no new lesions.  So with MS the doctors can see lesions (little gaps in the protective cover - myelin ) on my nervous system and then they put in a contrast agent and if they have a halo they are considered active.

So nothing active is a good sign that my MS is not progressing with my new meds.  My MS symptoms like the dysthesia of last fall are far apart and a lot more mild.  Likely due to permanent damage to the myelin from when my last med wasn’t working.  I still have parathesia with the weird tingling in my feet and hands along with mild fatigue but the herbs and MS meds seems to be leveling me out.  These meds seem to have far milder side effects.  I get a roaring headache the 24 hours after the infusion, and may have thinning hair which I am countering by adding Biotin.

I still push myself harder then I should most of the time because there is so much life I want to live while I can live it the way I want to.  Our time here is short and I am so grateful that I only have to come for an infusion every six months especially if this med go to use to work for me.

There are many people here at the center coming in twice a week, month, etc for life saving infusions.  I can suffer through the beating, alarms, noisy TV neighbors and nurses coming in to measure vitals ever 30 minutes if it means I can continue to stay fit, spend time with my family and love, and continue the upkeep on this big old house (more on house renos later.  So with that. I will leave you with a post from one of my favorite MS bloggers that captures some of my feels on MS and life right now.

https://www.everydayhealth.com/columns/trevis-gleason-life-with-multiple-sclerosis/when-living-in-a-pandemic-or-with-ms-enough-is-plenty/  “Enough is plenty”

Know you are loved.  Wishing you all a great week.

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!!

Holiday Letter 2019

2019 Blaesing Thompson Holiday Letter

Okay holiday notes are supposed to be bright and shiny but if I’m being honest the last 15 months have been full of as many downs as ups so mixing things up this year.  This year was full of perpetual health setbacks for me with Eosinophilic Esophagitis (fancy name for food sensitivities searing the inside of my esophagus), followed my MS fatigue, shingles, more MS fatigue, severe weight loss, thyroid issues and wrapped up in a bow with MS Dysethesia.  Short answer is my body doesn’t like me much… and half the time neither does my teenager.  

   

The whole family is working hard on having stable mental health with the great support of professionals, friends and family.  The last round of heavy things included the dissolution of my 22-year relationship with Joe, a split into two households and adjusting to new normal.  And finally, the passing of my last two grandparents Barb and Bill Wilson (my mom’s amazing parents).  All of these things are rough on their own but whew… so felt it best to be honest about things and for those who have followed along in daily life or on my blog (http://blaesing-thompson.blogspot.com/) I feel like we have handled things with as much grace and patience as we could muster.  So with that I will segue to the high points as it really has been a pretty good year too despite all of this…

Abby has had a lot of growth opportunities with Team Neutrino (the school’s 4H robotics team), Soccer and X-Country at the high school level, as well as band and choir.  We raised our last round of goats for the fair, plus Abby refurbished furniture and submitted photography.  We hosted a German exchange student for two weeks.  Abby had her first summer job working as a lifeguard and swim instructor.  She got to spend part of a week on a F.L.O.A.T. trip with Story County Conservation, backpacking Rocky Mountain NP.  She also made it through the first four ranks (Scout, Tenderfoot, Second Class, First Class) with her founding female troop with Scouts BSA and was elected Senior Patrol Leader of her troop. She is pushing hard through the last three ranks with the goal of Eagle.  Through all of these activities she is learning valuable life lessons about leadership and teamwork, just to name a couple.  Other than that she is a typical HS Sophomore.

 

Joshua is keeping busy with soccer and baseball.  He aged up in soccer and has had a lot to learn about positions and playing a larger field.  He retired the cello for the trombone and is still playing the piano beautifully.  He loves creating things and singing, whistling, and dancing.  He is also active in scouts and will age up from Arrow of Light to Abby’s brother Scout BSA troop in March.  He refurbished a chair and showed a photo at the fair for 4H and we are working to get him transitioned to a new 4H group in our county.

As a family we did manage to go on a few adventures including a trip to Chicago to see the Cubs and Milwaukee for my dad’s mom’s family reunion with a stop on the beach along the way.  Both kids went to scout camp. We made trips to see both sets of the kids grandparents at the lake and Nebraska.  And spent a lot of the spring, summer and fall getting the acreage cleared out, building chicken coop 2.0 and moving the girls to town with us.  We also continued the Broadway series for more shows and attended a bunch of live music with friends and family.

 

Shawn (me) is still with the Iowa DOT and with the never-ending winter was traveling to get technology classes for the field crews in across the districts from late March into mid-May.  I traveled to DC and Florida for conferences and am still active in national level work.  I am still helping with both kids scout groups, and playing in the alumni band.  Through all the crazy I thought it sounded like a good idea to do another ½ Ironman triathlon out in Boulder, Colorado in August which went way better than expected. 

And in an awesome turn in July I started seeing Steve who is a work and triathlon training friend.  Turns out we have a lot in common and are really enjoying our time together through music, meals, geocaching, disc golf (yikes) and other adventures.  I am still working to make my house a home (my folks and friends have been a big help this year) and stabilize my health, but I am grateful and happy and REALLY looking forward to the start of 2020.  Wishing you all peace, happiness and good health in the coming year. 

Dad's family reunion in Milwakee

Sending our love! Shawn, Abby and Joshua

 

Working to find my badass self

Well races last year were a bit of a bust.  I signed up to do Drake Half Marathon in April and has a slew of health issues all winter and spring in 2019.  Then did the Hope Run with the boy and got second in my age group (getting old so that helps). Missed the MS bike ride in Minneapolis because it was 40 degrees and raining so no thanks. I signed up for the Ames Triathlon a couple days in advance and it was a great race.  Then didn't race Midnight Madness due to lack of children and a leg injury that cropped up on the group run that morning.  I had to dial way back on running after that and was worried going in to the Boulder Half Ironman but my leg didn't malfunction until the last mile of the run and by then I was in a grove to finish.  After that I missed Bluff Creek because I hadn't had any down time with my kids most of the summer weekends and we just hung out and watched movies and spent time together instead.  And that pretty much wrapped up my lack luster season of missing half the races I signed up for which was a bummer as money is tight.

So this season here is my super tentative plan.  I am tentatively shaping up my season to look like this: 

• Drake half marathon (April 19th)
• MS Bike Ride?? (May 16th)
• Clear Lake sprint triathlon (May 30), 
• Hope run (early June)
• Grandmas marathon - eek first one (June 20),
• Ames tri (June 28 but may do the aquabike depends on my legs), 
• Midnight Madness
• Maybe bluff creek oly (aug 16), 
• Hiking trip (Early August)
• Square Lake half (sept 12) going back to a course I did five years ago to keep the long distance training going as I have my sights set on doing an Ironman once my health is stable.
• Hillbilly half marathon (Nov)

A lot of this depends on the stability of my health as I had a lot of health setback throughout 2019 (I'll have a blog on that soon). I need to see how far behind I am in run training already but keeping up on swimming and strength work with some shorter runs.  I hope to bike a lot more this year (so call if you are looking for a buddy). And need some long run buddies in April and May!  I start bike training tomorrow so here goes another season!

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