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 summer of unexpected

Well, as you all know it's been a bit of year for me so far.  Looking back at my summer I certainly had some expectations for how things were going to shake out.  Do some races to keep busy, move into my new place, and settle into a routine with the kids coming and going.

My race plans had a lot of hiccups.  I couldn't run the Drake Half-Marathon after a weeks of battle with MS fatigue mixed with food sensitivity issues and a bout of shingles.  I ran the Hope Run with Joshua and Joe, but couldn't run Midnight Madness due to leg issues I am still  working through.  I raced in the Ames triathlon which I signed up for at the last minute, only to opt out of Bluff Creek to spend time with my kids after either being on the road with them or not having them with me for many summer weeks.

My place still barely feels like home with mostly new (to me) furniture, new venue, and just a lizard to keep me company half the time.  I got moved into my new place and for weeks upon weeks I had totes and boxes and piles (still do really) on my porch, and in my parlor and bedroom.  We just got things hung on the walls a few weeks ago with the help of my folks and Steve.

Then there is the yard.  We got the trampoline moved out of necessity and spent several intense weeks building chicken coop 2.0 (there will be a separate blog on that) but neither of those are completely assembled in their normal functional state.  Then add the buckets and bags of plants I dug up from the old house, and all the plants I ordered with the hope of having a vegetable garden this year that languished most of the summer in place, only to get dumped out as water filled the totes they were hanging out in.

And the summer routine I thought would be simple ended up being a tad complex with mini vacation travels, Abby's first job (she taught swim lessons and life guarded at the local pool), an intermittent nanny, both kids off to scout camp, and grandma's house, loss of a friend, and a work trip plus travel for a big race (yet another blog), which left my head spinning and no real routine to be seen.


However, through all the crazy, and changes and reinventing I built some new friendships, conquered a few of the goals I set off to tackle, reintroduced myself to a new love that is constantly filling my bucket and I his, and started doing some of the things I've always wanted to do but for which I never had a willing partner.  All in all the last eight months have been a roller coaster of ups and downs but the driving force for me was hope for doing more than just surviving... finding my way to thriving.

So just know while I still struggle, and life it a chaotic and crazy most of the time, that I have found my way to thriving and I am loving it.  As always thanks for reading.

I leave you with the following quotes that I am aspiring to...

Slow down and enjoy life. It's not only the scenery you miss by going too fast - you also miss the sense of where you are going and why.
~ Eddie Cantor

In an age of acceleration, nothing can be more exhilarating than going slow. And in an age of distraction, nothing is so luxurious as paying attention. And in an age of constant movement, nothing is so urgent as sitting still.
~ Pico Iyer

Just keep smiling and swimming

The last six months have been some of the hardest I’ve experienced.  There have been stress, worry and yes tears but hopefully my smile is quick to return and as the saying goes just keep swimming (good thing I’m a strong swimmer).  I’ve had some ups and downs and a few of the things I set down became even more evident as I plowed through four months of 1000+ unread emails in my inbox this week(note to self purge some email mailing lists).  I’m slowly starting to get my life back on track but the struggle has been real.  A friend said to me they wished they could find the bravery they see in me.  It feels more like surviving one day at a time but I am filled with hope that soon I will be thriving again.

January was filled with navigating paperwork to get the separation process started and figure out how to live together for the next six month.  February brought one health set back after another.  I had an MS flare for a couple of days that rolled into a couple of weeks of shingles rash on my face (still healing) followed by another MS flare.  That left me whimpering into March.  I started working with a dietitian in February to try to identify what my food intolerances are and was doing well until I started taking meds for shingles which left me struggling with upper GI issues and caused a hard stop on adding more foods I could tolerate.  For several weeks going to the super market threw me into depression.  I’ve grown so tired of eating the foods I know are safe after nearly two months of the same options.  Then I ran out of allergy meds (my acupuncturist ran out and I couldn’t get more in time) and had a major flare up with that which now has me hacking through the last of the drainage.  I have not had much control over any of this so just have to keep moving forward.

January through May is also my busiest time of year at work and I would not have survived so far without the help of my amazing interns who polished the training manuals we use with the field finished updating content with limited guidance.  I’m also doing an extra project from the agency director working with teams across the agency on improving engagement, so I’ve had a lot of extra travel on top of my regular travels to work with the maintenance and construction teams with their IPad technology.  I know my work output has been only enough to get by so trying to get refocused and get a handle on my projects that need more attention.  Starting to make strides in that area knowing I have four more weeks with work travel ahead but I love my job so I’m not complaining.

I’ve also been working with Joe to figure out what makes the most sense for housing, co-parenting, etc.  After getting beat out on a couple of properties he was interested in I was able to connect him with the family of my intern who graduates in May about buying their condo and that worked out.  Just before that while we were all looking at houses together Abby encouraged me to look at a house up the street that was out of my budget.  It turns out it has a tiny house behind the garage that is income earning with a long-term renter which put it well inside my budget so in early June we will all be moving back to town with Joe out by the middle school and me just a couple blocks north of the library in Ames.  On the selling of our beautiful acreage which neither of us could afford to stay on, an acquaintance from the ISU pep band saw me post about it on FB and we now are working through the last of the details for that contract.

Pieces are starting to fall into place but still a lot of work ahead to start the next phase of my life.  I’m sure there are more though days ahead, and I’ll be asking for your help along the way but I have hope for brighter days and new adventures ahead.  As always thank you for reading.

Updates - Settling a new home (Written in April '17)

As I was talking to a professional colleague while traveling this week she pointed out I hadn't posted anything to the blog in a while.  It's been a whirlwind six months for my family and I.  We spent the summer last year chasing the idea that it might be nice to live outside of town with a little space.  We ventured through at least a dozen homes, mostly old farm houses outside of the Ames city limits.  When we had started to lose hope of finding anything and were shifting our thoughts towards the slow progression of getting updates done to our house in Ames, several more listings popped up, and we found "the one" and made a fast offer.  October through December was busy with lining up flooring installations, countertops and other needed repairs and updates all mixed in with the chaos of the holidays.

Come mid-January, immediately after my being in DC for work travel for a week, we moved with the help of a small army, into a farm house over 100 years old.  It wasn't any old farm house, as it had been thoroughly renovated in the mid-90s to add several additions including a three car attached garage.  The property is great, three acres even, four miles south of ISU campus, with the house and a big pole barn and the loveliest sunrises and sunsets you've seen across the Iowa farm fields. 

The beginning of the year found us adjusting to our new normal.  Careful scheduling of activities so we weren't running back and fourth to town all the time.  Learning the timing of running the kids to school in the mornings, figuring out after school schedules so everyone was rounded up at the same time or by a second parent or extended community of ours to get everyone back home again.  We also got the kids officially open enrolled in the Ames school district to keep some continuity in the kids routines.

Three months in, we are finally getting a handle on things, but with both Joe and I traveling for work in March and April scheduling remains a complicated dance.  The last part of this puzzle is figuring out the right moves to get our Ames home off the payroll.  Yes it is still listed, no we haven't had an offer despite a dozen other homes in the neighborhood going sale pending.  Ames is a pretty aggressive, constantly changing housing market but our "Ames house" still sits there empty.  I continue to go over to make improvements like paint touch up, cleaning up flower beds and putting down mulch before racing to the airport for a work trip.

Because of our haste to secure the farmhouse in a very aggressive acreage market we used a VA loan since we wouldn't have a down payment until we sold our other house which wasn't even on the market until right before New Years.  I believe we will sell soon, but all of this hasn't been without stress so as I wrap up this post I ask you to send positive thoughts out into the universe to bring our house a new family to make it home SOON!  We miss our old neighbors, but we don't miss the old house.  Needless to say the whole endeavor has been exhausting but I'm pretty sure we wouldn't change a thing.  Thank you to our family and friends who helped us make it happen. Stay tuned for adventures in chickens, and until next time thanks for reading.

National Parks 100th Aniversary - Adventures on Isle Royale

National Park Adventures of Two Middle Aged Cousins

Prehike

In my college years I did a fair amount of backpacking at locations across the country.  I am really happy when I am in a nature environment and with the daily grind of work, kids sports, and stressors I need to reboot in nature.  My cousin Stephen and I did a trip to Colorado in 2011 and had talked about going to Isle Royale even back then so when he asked if I was game in going with him this summer I was intrigued by the option.  Once we set a date we were in planning mode.  I was in a wreck in May and wasn't sure how my shoulder would do and of course planned to do some local hikes with pack weight ahead of time but alas only did one.

Stephen on the boat

I drove up through Iowa and Minnesota.  I spent a little time stretching my legs at a lovely park in Duluth later afternoon along the way.  I picked up a geocache or two as well amongst all the Pokemon users.  Stephen and I met at a hotel casino on the American side of the Northwest tip of Minnesota and tried to guess how much stuff we could cram into our packs and stay at or under 40 lbs.  The boat we rode over on (Voyeger II) is shown to the left and we rolled out early the next morning to catch the boat.  I spent most of our ride over to the Island reading a book about the history of the Island in the quiet lower level of the boat.  We had Canada off to our left and Lake Superior all around us. As we got closer to the island we saw smaller islands around it.  There was a stop at the Windego ranger station where we picked up our backcountry permits and then we hopped back on the boat to wait for our stop at McCargo Cove.

McCargo Cove

It was a warm day when we put in at McCargo and we got our packs first and chugged up the hill to find shelter as McCargo had almost a dozen little shelter available to stay in.  After checking one side we found a group moving from one shelter to another so we took their vacated space and threw down our gear.  We filled our water bottles and then since it was early afternoon we took an couple of hours to explore the trail and visit an abandoned mine nearby.  We ended up sharing the cabin with another couple and had quite a windstorm that night so I had some restless sleep.

One entrance to part of the mine
and we walked through this.

The glorious thimbleberry

One great thing about the island is it fed us along the way and we ate a lot of thimbleberries as well as blueberries and raspberries where we could find them.  The thimbleberries got to brightening our days as we got farther into the trip across the island.  The first official day on the trail it was breezy, sunny and a bit more warm and humid than we were expecting.  We took our time and enjoyed the views coming over part of the Minong Trail.  Fortunately the hot weather week was the week before we got there so we only caught the tail end.  We were a bit loopy by the end of this day and as we were looking for a campsite nature got the best of me. 

 

First day on Minong

First day on Minong -
Photo bomb??

Small lake north of Minong
before Todd Harbor

Canada in the far ground.
Minong Trail

We stopped on the Minong a couple of times for snacks and water.  Then had a late lunch at Todd Harbor and enjoyed the views and lake breezes.  From the ridge line, lakes that look small on the map look quite large in real life.  I don't know what these lakes are called without looking on a more detailed map however they were small for Isle Royale.  After stopping in Todd Harbor we turned south off the Minong trail to head to Hatchet Lake for our overnight stop.  I spent much of the day with the view below letting Stephen set the pace.  My shoulder was nagging a bit throughout the day with the pack weight pulling on it and I was pretty certain the hiking boots I was using (normally reserved for snow shoeing) were giving me blisters.  We were hot and tired after around ten miles on the trail.

Finally coming into Hatchet Lake

Rock Cairn on Minong Ridge Trail

Campsite at Hatchet Lake

Cool Moose Antlers in the
Hatchet Lake campsite

Mother Nature decided to mess with me at this point, and as we bushwhacked our way into the Hatchet Lake campsite. I must have hit a root running parallel with the trail and the next thing I knew I was cursing from the Thimbleberry bushes.  There was a huge pop in my ankle when I went down and this is the same ankle I tore up in 1996 and 2012  so I was fearing the worst.  Yes this was the end of the FIRST DAY on the trail. 

Lake Hatchett

Stephen found a campsite for us while I whimpered and cursed next to the trail on a rock.  I gingerly followed him up to the site and then powered through the first setting up of the tent for this trip and made myself a walking stick.  I found my way to the outhouse and met a lovely couple from Rock Island, Illinois who later took mercy on me and gave me an ace wrap (yes I normally carry one with me but transitioned to a new pack for this trip and didn't transition my ace wrap... GRRRR!)  Once we were set up, had fresh water, and had eaten I assessed my toes (small blisters on my pinky toes were rehabbed) and ankle, and then read quietly for a bit before heading to bed.

First views from the Greenstone Ridge
Hatchett Lake in the background

My walking stick
on the Greenstone Ridge

The next day (day two on the trail) we had a quick breakfast and filtered some more water.  Then I broke down the tent and got a head start while Stephen finished his morning routine.  















I figured he'd catch me eventually gimping along. The first half mile was switchbacks straight up the side of the Greenstone Ridge to get to the Greenstone Trail.  I powered up that trail with my trusty stick and then stopped to admire what would be our waning views for the day.

Greenstone Ridge

It was less humid and cooler, however the afternoon brought light drizzle.  We ate our lunch under the observation tower at 1377 ft on the Greenstone Ridge trail chatting with many of the people we had been camping near over the last couple of nights.  We created trail nicknames to keep them straight between the two of us.  There was party of six from Minneapolis which were part of a hiking club from there.  They usually blew by us pretty quick.  There was party of 4 from Illinois who were two grandpas, a son and grandson and they usually headed out around the same time as us or passed us early on.  Then we ran into several groups of two along the way like the one who gave me a wrap.  I think their nickname related to them taking the float plane to the island.  We enjoyed chatting with them along the trail and in the campsite each night.

Lake Desor land of the mighty mosquito

The end of the second day of hiking, around 8 miles, brought us to the very large Lake Desor, land of the mosquitoes.  We did not spend much time outside of the tent in our camping space because it was very buggy.  

We did however hang out on the beach with the multi-generational crew for a while and listened to their stories of many, many trips (11 and 18) to Isle Royale over the years.  Isle Royal is one of the least visited National Parks because it is difficult and expensive to get to, but one of the most revisited National Parks because it is beautiful and offers many different paths to traverse.

Despite the discomfort I had been in the entire day I was already formulating a plan to come back in a couple of years with my kiddos.

Me and Lake Desor... still smiling

Have to stay hydrated

At 24 hours later...
toes and ankle purple and swollen

We turned in early this night because the drizzle that eventually gave way to rain and lots of it. Surprisingly I slept pretty good with the nearly constant patter of rain on the tent... and the buzzing of mosquitoes outside.  In the morning it was still raining so we waited a little bit for a lull in the weather and broke down camp as quickly as we could and set out with an extra five lbs of damp tent on my back for good measure.

Soggy and miserable...
pausing for nourishment
not quite halfway there

The last day of hiking on Isle Royale was a mental and physical challenge.  The trails were wet, slick and muddy in places.  I didn't take my camera out much this day but did use my phones a couple of times to capture things here and there.

We spent much of the 11 plus mile trail day in rain of varying intensities but also trying to find the highest point along the trail so I could get a screen shot to submit for an Earth Cache I was working on.  Most of the hike was  walking through maple forests and bushwhacking through berry bushes.  Needless to say we were very soggy all day.  I had chosen to wear my quick drying shorts that day but it ended up allowing water to pour into my boots all day.

Whenever one of us would get hangry we would take a couple of minutes, regroup, and have a snack.  With the persistent rain and no shelters along the way we mostly just trudged along.

My pack was trying to stay dry too

We knew from the grandpas that once the forest changed from Maples to Evergreen trees along with a persistent down slope in trail that were were getting close to our final destination.  However we weren't sure how close and it felt like those last couple of miles took for ever.  

Wonderful Dry Shelter

The final challenge was finding a shelter in the campground.  Since Windigo is a popular day tripping and base camping location they have a lot of shelters there.  The trick is finding a shelter with the current inhabitants in it to see if they had room for two more.  After checking 10 or 12 of them we finally found one we could move into.

Clean and fed before I caught
 my boat to the mainland

The cabins are basically three sided with a roof and raised floor for you to put your sleeping bag down.  The last side is screened in so it is essentially protected from the weather and larger critters.  We stayed in one of these two out of four nights and it was a nice respite from the close quarters of our two person tent.

Windigo was a wonderful oasis and functions as a tiny city.  It has a store, a ranger station, potable water, laundry and SHOWERS!  After being wet all day we could hardly wait to get clean.  Stephen was staying on the island for a few more days to solo hike and decided to do a load of laundry so I left Isle Royale smelling fresh with a pack full of clean clothes.

Beautiful Flowers

That evening we went to an interpretive talk at the ranger station to learn about the geology of Isle Royale... I know... you totally didn't expect me to be excited about that but it was fun.  For an added bonus a lady from one of the boats docked there gave me a bag of ice and so, on the third day after 20 miles on the trail I finally iced my swollen bruised ankle.

My ride to the mainland

My last day on the island we explored a bit, went to two more ranger talks, one on the lighthouses and sunken ships around the island, and one on the animals of the island.  I also did another Earth Cache and got to meet the cache owners, friends of a friend, and talk geocaching. Despite being there for nearly a week we only saw signs and sounds of animals but did not spot any moose, fox or wolves.  We did see tiny squirrels but that seemed fairly anti-climatic.  

Mid afternoon I bid farewell to Stephen and the island.  I wished I had a couple more days to stay and explore from Windigo.  The boat I returned on is a day trip vessel and half of the people on it were only on the island for four hours.  The other half were hikers like me heading for home.  I was able to catch up with a father and son from Miami who we had come to the island with and we got a close up shot of on of the lighthouses.  Despite my aches and pains, and the mixed weather, I really enjoyed my time on the island and will certainly be going back in a couple of years.  While it is a challenge to get there, it is definitely worth the journey.

Funky mushrooms

Funky mushrooms

Thank you for reading along.  


“The nation behaves well if it treats its natural resources as assets which it must turn over to the next generation increased, and not impaired, in value.” – Theodore Roosevelt

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.