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!!

MS Update - Nutrition and Ups and Downs

I had originally planned to blog about nutrition and my adventures trying to figure things out but first I am going to grumble for a paragraph or two.  Feel free to skip the grumbles.

Last week was one of the toughest ones for me since my diagnosis and going on MS meds.  Mondays are generally the most difficult day of the week for me.  I take my meds on Sunday, Tuesday and Thursday nights.  During the week I eat pretty clean, cut out gluten and sugars, but on the weekend I allow myself a little leeway with gluten, sugar and usually on the go so not enough rest or fluids and that sets me up for what can be rough Mondays.

Last Monday I woke up dried out as usual (I hate forced heat and my humidifier just doesn’t turn itself on often enough).  I was pretty achy on top of my normal Monday medication muddle.  I just chalked it up to being a typical Monday muddled through my day.  Wednesday started the same way but this time I took some aleve to knock things back.  Wednesday night I was feeling some fatigue although not to the extent of lead arms and midday Thursday had me dragging again.  I had been sleeping poorly the last couple of months but this week I was struggling to stay up past 8:30 and getting 8-9 hours of sleep each night.  I decided to layup on Friday to rest, ate pretty clean all weekend, and finally started feeling better by Sunday.  This Monday ended up being a good Monday and while I appear to be back to nights of sleep interruptus I feel tired but human.

MS is a tough disease because outsiders cannot see it and it’s effects, and I don’t like to fixate when I feel crummy… sometimes I have to stop my forward trudge to rest.  It is hard for the people around me to know when its a good day or bad day and I feel like it puts us all a little off balance.  When I have a week like last one it is easy to get frustrated and discouraged.  I am not a negative person by nature but sometimes I have to force a smile and be more upbeat then I feel.

So on to my original topic.  I am sure I have mentioned my massive diet changes as a result of my diagnosis. I miss my glass of wine with dinner... I don't drink much since I simply don't feel up to it most nights and have been more susceptible to migraines with the MS meds triggered by things I enjoy like wine, chocolate, etc.  I have done a lot of research the last few years about nutrition and diet feeling like I needed to make a change even before I was diagnosed.  The trouble is I am a mom and a wife and sweeping changes have a huge impact on the people I love. My family have sacrificed many a loaf of bread or plate of pasta the last year and I appreciate their willingness to support my health.  

My research on the current research has shown that wheat has been so genetically modified that they have minimized the nutritional value of our mainstream flour.  Also it is a fact that the more processed the food the less healthy it is so we have made a big push towards whole, organic (chemical pharma free) foods.  We have been focusing on lean meats (salmon, chicken, tilapia).  Lots of fruits and vegetables and many we hadn’t tried before.  For our grains we have quinoa, sweet potatoes, and wild rice.  Our cookie jar is filled with nuts and dried fruit, and we have avocados with every other meal.  We are finding that our meals are still quite filling and it wasn’t a huge surprise but we are finding our meals to be more flavorful and satisfying.  We only have desert nights on the weekends.  We are learning to make some gluten free things and have finally found a loaf of gluten free bread that tastes normal.  Joe and I were just talking and we have more energy most of the time and even crave veggies when we slack off on our eating habits.

So why am I rambling on about this?  Because it is forcing my family to give up things they enjoyed.  We all eat the same meals at our house. Joshua misses macaroni and cheese.  Abby misses white rice and bread, and she seems to understand why the change is important. She even pays attention to what I eat to keep me on track.  Even so it seems like they get excited to have me out for the night because now these things are special treats for them to have when I’m not home.  Of course we draw the line at good pizza.  Good pizza is always welcome in our house... oh and chocolate too… in moderation.  As always thanks for reading.

More resources and some great new recipies

Here are  a couple great blogs I found by MS folks living well.

http://milesandtrails.com
Beth is also a working mother of two who does marathons and half Ironman triathlons and was diagnosed in 2012.  Her latest blog is about finishing the Boston marathon.

http://thelesionjournals.blogspot.com/
Christie is another woman who is living with MS and is an avid cyclist.  She has a lot of great MS resource information on her site if you want to learn more about my illness.

Here is a great Ted talk which gives me hope.
Can a Damaged Brain Repair Itself by Dr Sidarthan Chandran

So I mentioned that I made some sweeping diet changes (minimal refined sugar and minimal refined carbs) and used Lent as a trial basis so I had somewhat of an out at the end of the Holy season.  I did really very good following this plan and only allowed myself a little birthday cake and ice cream for JJ's birthday a couple of weeks into Lent and the occasional high quality chocolate square. I spent a whole weekend in the woods with strangers and still managed to eat within my plan, and found the other ladies to be very accepting of my diet choices.  I have found a lot of snacks that take care of my cravings and don't throw me off my path.  Going into Easter weekend I allowed myself a little leeway with the family gathering over the weekend.  I allowed myself some refined sugar in the way of lemon meringue pie and decadent cupcakes.  None of these were gluten free and all of them had piles of sugar.  I also allowed myself a favorite in Black Market pizza which also has gluten.  Needless to say I paid for my indulgence with an unhappy gut and a sugar hangover on Monday.  Grrr.   Sadly outside of the amazing cupcakes I realized I didn't miss the rest as a post indulgence reflection.

I never planned to stop eating better after Lent but I felt like I needed to be less hard on myself after 47 days of sacrifice was complete.  MS isn't going to give me a break.  Even if the meds work and by some miracle I become symptom free again some day, I really feel I need to do better to support my body and it's ability to try to heal itself.  I believe this can only happen by fueling myself properly, getting proper rest, regular exercise and figuring out ways to better handle the intensity of my lifestyle.

So here are a few of my favorite snacks.  Homemade trail mix - walnut pieces, almonds, brazil nuts, cashews (all unsalted), lots of dried fruits, and the occasional m&m as part of several mixes I buy.  when I am on the go or heading to the gym before lunch if I don't have a handful of trail mix I will eat a Larabar which don't have any added sugar (unless they have chocolate) and are usually a mix of nuts and berries pureed together.

My favorite breakfast adventures - I have been making smoothies four mornings a week.  They are nutrient dense and quite filling.  My smoothie base is something like this - 1/2 cup of almond milk or 1/2 cup of juice, a banana, a cup of dates, 1/2 cup of almonds or almond butter, and a cup of plain Greek yogurt.  I then usually add a couple more fruit (a mango, a cup of mixed berries, etc) and a couple veggies ( 1/2 cucumber, 1 large carrots, one cup of steamed kale or spinach.  This usually makes two days worth of 12 oz smoothies.

New favorite recipes:
From "The MS Discoervy Diet" - Carrot and Ginger soup
1 yellow or white onion - peel and sliced
1 tablespoon of fresh ginger peeled and grated
2 tablespoon cooking oil
4-5 large carrots unpeeled
1 cup orange juice
1-2 cups broth (I used veggie but can use chicken)
salt to taste
2 tablespoons almond butter (essential the book says)

saute the onion and ginger together in the oil. (wrap any extra ginger in plastic, bag and freeze)  Cut the carrots into coins and add to the pot.  Add the orange juice and broth mixtures and cook 20 minutes until carrots are soft.  Add salt and almond butter.  Puree in a blender or food processor and eat.

Here is another fan favorite http://theshiksa.com/2012/05/01/quinoa-black-bean-burrito-bowls/  Here is my variation.

Quinoa Black Bean Burrito Bowl

Ingredients

• 1 cup quinoa (I used a seasoned box mix and just followed the directions to cook.  When I make plain bagged quinoa I use 2 cups of vegetable broth and some herbs.)
• 1 tbsp olive oil
• medium eggplant diced and sauteed in olive oil with garlic below
• 1 clove garlic, minced
• 1 can (15 oz) black beans, rinsed and drained
• 1 cup shredded spinach instead of lettuce
• Salt
• Sliced avocado
• 1 cup freshly grated colby jack cheese
• 1 diced tomato 

Servings: 4

Cook the quinoa per box (or for around 20 min).  Heat up the black beans.  In bowls layer in a base of quinoa, then add black beans, then layer in spinach, sliced avacado, tomato and cheese.  Yum!

I will be posting more favorites soon even a great Brussel sprout and asparagus one!

Big Changes - The Journey I Call Lent

Cool quote of the week "You can make it your excuse, or you can make it your story."  While this quote isn't about MS it fits so thanks for continuing to read my story.

So this post is about making my body a healthier place to live.  The first couple of weeks Joe and I consumed quite a few different MS book, read research links and shared stories from other MS survivors.  My favorite book so far is "The MS Recovery Diet - Take Control of Your Health, Change What You Eat, and Live Symptom-Free" because who wouldn't want to take control and live symptom free?

I read several other books that highlighted food choices, vitamins and supplements, and told stories of others like me.  I selfishly focused on people living "successfully" with MS because quite frankly, call it denial or determination, because I am not willing to go through an kind of major decline and am avoiding the "pity party group".  I am certain that no matter how this illness tries to progress I will find a way to keep on keeping on.

So after reading, note taking, and conversations I decided that I needed to go drastic with my change to support healing in the fullest way possible.  I made this decision with a caviat, I had Lent knocking on the door, basically giving me an out if I didn't think I could sustain the changes.  It is easy to wade into something like this with enthusiasm and then peter out when the going gets hard so I hope that won't be the case here.  I need to succeed in change for the sake of myself and my family.

For vitamins and supplements, my regular doctor and I ran some numbers.  I was already taking 2000mg of Fish Oil to help with inflammation in my eyes and muscles so check.  I was already taking a multivitamin that has a high dose of B complex and a minor dosage of Vitamin D.  She had me add 2000mg of Vitamin D as it is the most commonly mentioned addition to diet (looking forward to more sun time so Vitamin D will come naturally from nature.)  I also take L-Lysine to support my immune system (it is an herbal anti-viral) as the meds are known for reducing white blood cell counts and known for weakening the immune system.  I have been taking this one for a year and have managed to be illness free (knocking on wood.)

The last addition which I don't remember to take every day is a refrigerated probiotic.  This one is very important for me based on one of the symptoms that can flare up in me.  The MS when it is raging affects the nerves that allow me to control the push component of my bowels (no it doesn't mean I am constipated I just can't poop.)  So keeping my bowel health well maintained, eating right, drinking lots of water and taking my probiotic has me on a pretty good schedule so should I have a flare up again it hopefully won't be as bad.

All of these changes I will deem permanent.  On to the lenten promises... 47 long days of sacrifice.  First the easy one... Abby asked Joe and I to give up grown up drinks for Lent (No we aren't heavy drinkers but apparently our grown up drinking has made an impression.)  We compromised on drinking only one day a week on the weekends and aside from one extra night for me I have followed that promise. 

My second two promises to myself are part of trying to move to an MS Recovery Diet.  I largely cut out refined carbohydrates and refined sugars.  I gave myself a pass for Joshua's 5th birthday because ... chocolate cake!  It had been two weeks of healthy food leading up to this and sadly cake didn't taste as good as I remembered (this says nothing towards the chefs.)  This isn't easy with a dining room full of Girl Scout cookies and I have to be honest, about a week in I had a major craving for cookies but I ignored it and carried on.  So what does this mean exactly???  I have done a lot of reading on the magic of gluten free eating.  I have cut out 95 % of products that have wheat in them.  For the most part I steer clear of things that are breaded, have wheat (pasta, breads, etc) but have located a few choice gluten free recipes and sliced bread to replace our wheat pancakes and toast.  I am keeping these "gluten free" options to a minimum in that I generally don't imbibe each day but rather every two or three days so refined carbs are pretty much out of the picture.

So that brings me to no refined sugars.  I had gotten lazy in the months wrapping up 2013 and had put in a few pounds thanks to the glorious wonders of dark chocolate peanut m&ms, holiday sweets and the like.  I had gotten out of my healthier eating habits and look what happened... with sugar and stress I had a relapse.  So down with refined sugars, no soda, no Girl Scout cookies, no m&ms.  Aside from the two days surrounding the celebrations of JJ's birthday with cake, ice cream and yummy gluten free homemade cookies I have been 95% true to my pact.  I allowed myself a sinner Saturday indulgence of two homemade sugar cookies today, and also allow myself to consume one square of high quality, fair trade organic, 55% or higher coaco each day if needed.... because well, its chocolate and nuf said.

So, what do you ask, am I actually eating?  Most mornings I am making a smoothie to start my day.  It consists of a handful or two of kale or spinach, part of a cucumber or handful of carrot bites for my veggies.  Then add 1/2 or a whole cup of plain Greek yogurt, a handful of dates, a banana or two, and misc other fruit plus a handful of almonds.  This usually give me a couple of days of smoothie.  It is yummy, filling and packed full of things that are great for me.  If I need a day off I go for some fresh fruit, gluten free toast with almond butter, and/or a hunk of cheese and a boiled egg.

For dinner we have been having a bunch of wonderful meals (many pulled together by my awesome husband).  We have a new favorite of brussel sprouts and asparagus with a side of fish and some fresh fruit.  A spinach, sweet potato, and garbanzo bean soup.  Fish tacos with a mango/avocado salsa and tiny corn tortillas.  Salmon burgers and wild rice/baby portabella side.  Pork loin... and one of my favorite salmon quiche recipes from Pike Place.  We had one pasta meal with quinoa pasta, sauce and chicken meatballs.  Many of these dishes had steamed veggies or salads on the side.

As a plus the kids have given up sugary dessert except on the weekends (which is a habit I hope we keep) so it has been fun to come up with a healthy after dinner snack that is yummy.  Last night it was sliced apples with almond/peanut butter.  Yum!

This week I am looking forward to gluten free pizza/calzones, quinoa cakes, lobster dip bake, spaghetti squash spaghetti, Hungarian eggplant, etc and so on.  Lots of a really wonderful meals for the family to enjoy that in theory promotes my long-term health.  And for a bonus leftovers for lunch in-between days with kale/spinach salad.  The books recommend more food changes and a new book called Wahls Protocol written by a Dr with progressive MS who was able to reverse her disease with diet, exercise and a positive mind (I have the book but I am reading Madame Curie's biography right now as I needed an MS break.)

My head has been clearer at work the last two weeks although I feel a little bit scattered at home.  Another plus from all these dietary changes has been on the scale.  At the beginning of the year I weighed myself and also measured my hips, waist and bum.  I am down 8 lbs and nearly two inches which is an added perk.  I have been exercising regularly but that is a story for another day.  So the data continues to flow, Lent charges on for three more weeks and I hopefully continue to heal.

As an aside I just watched the move "forks over knives" and I highly recommend it.  It is along the lines of the changes my family and I are working to implement in our diets without going totally vegetarian.  It talks about a lot of the things that are wrong in the US with our diets, healthcare, subsidies, etc. and it worth the time to start to educate yourself about the issues.