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.  :)

MS Update - Adjustments and catching my breath

Here are a couple of interesting MS related posts
http://www.nationalmssociety.org/About-the-Society/News/National-MS-Society-Invests-$28-Million-in-New-Res

http://multiplesclerosis.net/living-with-ms/multiple-sclerosis-the-ugly-truth/

It has been a bit since my last post.  Life is going a million miles a minutes and I am doing my best to keep up.

I learned a few things about my MS this winter.  First, DRs take more stock in whether or not the meds are staving off major relapses then they do about daily quality of life.  I guess keeping my body from permanently damaging itself is more important. :(. Hoping to talk to my Dr about other options in the future.

Second, cold sucks for me too now. When I get cold it is like my body flips a switch and cuts off circulation to my fingers and toes, and feels constricting.  This happens when I am cold even if it isn't cold around me.  I'm learning to wear layers and think harder about wearing sandals with no socks (which I love to do April through Oct).

Finally, it was a pretty intense first four months of 2015.  I traveled a lot for work around the state logging thousands of miles and many hours in the car doing training and outreach.  While it was important it also beat me up a bit.  April brought two in state conferences, one that I was primary contact for at a national level so there were a lot of moving parts but I had a great team.

I am still working on my stress management skills as I am certain that has an impact on my body but I am also trying to cut myself some slack.  I am still really watching what I eat and getting regular exercise so that helps.

I'll write more about my exercise goals soon.  My last comment is that I joined a Bike MS team again this year.  The team is led by Charlie whose wife also has MS.  I am not sure if I will do the ride (still working out all my summer obligations) but helping raise research funds for a cure.  To donate to me and my team
Go to this link: http://main.nationalmssociety.org/site/TR?px=13447566&pg=personal&fr_id=25324
(You can also mail a check so let me know if this is your preference.)

Until next time thanks for reading.

MS Awareness Month

March is MS Awareness Month


Generally, like with all illnesses, you can live blissfully unaware of cancer, diabetes, or even MS until you or someone you know gets the news of a diagnosis.  It was just over a year ago when my fears of having MS were officially confirmed.  As I may have mentioned before my Dr was pretty sure I had MS over a year before I was diagnosed.  By the time I was officially diagnosed I was just glad to finally know what was going on after several years of increasingly worrisome symptoms.

So, for those of you just joining the blog, or who don't really understand what MS is, I will give you a quick synopsis.  MS is where the body's immune system attacks the nervous system and does damage to the protective coating on the nerves.  MS manifests in a lot of different ways so it can be difficult to diagnosis.  Common symptoms that can occur to trigger a diagnosis include: rapid vision impairment, numbness and tingling in extremities, periods of unexplained dizziness, and rapid mobility impairment to name a few. There is no cure however my neurologist tells me there has never been a better time to have MS.  There are over a dozen drug therapies that can slow the disease progressing and there is A Lot of research being done especially on the progressive side of MS.  I am grateful for both of these things because it gives me hope.

I still have symptoms but as far as I can tell they aren't getting worse.  I am really not getting any new issues outside of strange cold sensations in my hands (however it is winter in Iowa so it is possible it is just cold!)  A MS group is now meeting at my public library once a month so I have a great new community of MS survivors to learn with and share stories.  I look forward to getting to know them and their families better.  I continue to follow all the latest research studies that come out and study any new meds that get approvals.  I do the best to be kind to myself when I have a rough drug reaction or am not able to keep up with the activities I want to participate in.

All in all life with MS is good.  Stay tuned for my next post about my training recap from 2014 and my plans for 2015 as I continue to beat MS.

In the meantime if you want to learn more about MS or support MS research you can check out these links.  The first two are the major research and support organizations for people learning about MS.

More about MS and MS symptoms
http://www.nationalmssociety.org/Symptoms-Diagnosis

Multiple Sclerosis Association of America - they track a lot of the news coverage and research.
http://www.mymsaa.org/

Great source for current research and drug information

http://multiplesclerosisnewstoday.com/

WABI SABI - embracing the imperfect

wabi-sabi is the soulful idea of embracing the imperfect, of celebrating the worn, the cracked, the patinaed. Wabi-sabi is a decorative concept as well as a spiritual one. It’s an acceptance and appreciation of the toll that time and tide take on everything and everyone. (This quote came from the blog at the first link below.  He is a great MS blogger from the UK.)

http://www.everydayhealth.com/columns/trevis-gleason-life-with-multiple-sclerosis/multiple-sclerosis-detente/

http://www.everydayhealth.com/columns/trevis-gleason-life-with-multiple-sclerosis/kindness-we-can-do-ourselves/

I know... it has been a while since the last time I pushed a blog up. Seems there were a couple of holidays, a major work trip, lots of minor work trips, swim lessons, Girl Scouts, you know the usual for me. The last twelve weeks have had my head spinning and made it hard to catch my breath.  

It has been overwhelming to be honest. I was a bit down going into the holidays. Nearly a year since my official MS diagnosis with last year being a whirlwind of diagnosis, research, making a plan, executing and adjusting the plan, bumping up against limitations, and breaking through a few. I had everything to prove... to myself. But there was a nagging at the back of my mind the waiting for the other shoe to drop. It is so hard to know what the future holds and I catch myself falling into MS patient with obvious physical deficiencies where my head is telling me something isn't working quite right (spasticity in my hand, a tightness ring on my calf, the nearly constant mild tingling in my hands and feet, and sporadic bladder malfunctions) and fearing the future.

I was finding that even things I love like my job (overwhelmingly busy), my pool time (too many people waiting for a lane, crazy water temps, people not using good pool manners), time with the kids (pestered by the Christmas bug of "I wants", fair versus equal, and a budding tween) was just leaving me irritable. 

We were driving to Muscatine for time with my folks families and I was reading a book on mindfullness and it gave an exercise to change my perspective. Last Christmas I struggled with the natural flow of change with family members not able to come and traditions that have a shifted a bit. It makes me sad but I wanted to go into this holiday with a more positive outlook and it worked. I didn't spend hardly any time dragging the MS anchor along, it was all about eating and catching up over laughter and building good new memories.

I have had a few hiccups since Christmas. I ran out of my MitoQ which is a CoQ10 that is formulated to work at the cellular level. I knew the three months I was taking it was making a big difference because I didn't have any fatigue for three months. I was thinking more clearly and feeling more like myself... and then I ran out. It runs around $55 a bottle for a month and I have to order it shipped from New Zealand in three month batches so we have to have it in the budget when it is time for a refil and do it three weeks before I need it. Well the three weeks while I waited for my new supply were pretty rough. One day I was in a meeting with a few office mates and was handed the dry erase marker and was writing down brainstorming ideas. While writing a couple of words I got lost in the middle and had to ask for help to get to the end. I also had a mild fatigue attack. I found myself cursing at the mail box after two weeks and was overjoyed when my new supply arrived. Back to having more clear more complete thoughts and more energy again. So very grateful!!

My family also spent last year putting positive thoughts and experiences in a jar to look at at the end of the year. I had to empty the jar to make room for 2015 so I have them all in a baggie for us to look at together. I read a few on my own one day and here are a few that brought a smile to my face:

* volunteer sunflowers along the side fence line

* joy and bliss on my kids faces

* snuggles and giggles with my kids

* work travels that let me experience American history

* food at first volunteering

* Girl Scout camp adventures

The other good thing that rolled into my life is the new MS Support group meeting in Ames. When I went into a life with MS I vowed that it would be a positive part of my life and that I would stay away from people with MS who had a negative focus. This group is twenty strong with a wonderful mix of people in all stages of MS, newbies like me and old hands at navigating this illness. I am excited by what the future holds for all of us to be able to share information, support each other and grow as a family of survivors. A lovely woman sitting next to me was diagnosed in the late 80s and she said what I was thinking the other night. She mentioned she spent the first ten years waiting for that other shoe to drop and it never did. She said she finally got to the point where she is just living her life and stopped the waiting game.  

I have to be honest I am not there yet. My decline had been so rapid and persistent the two years before my diagnosis it is scary to think where things would be without meds, diet changes and more focus on what is important. But my neurologist is positive with my response to the meds and feels like I am on the right track. The constant encouraging research strides are also a positive light for me and all my MS family bringing real hope for tomorrow. So I look into the new year with a life and determination to be the me I want to be ... I have hope and time to wait... with my shoes at the door ready for the adventures life brings me.

Wishing you all a most wonderful new year full of opportunities for learning and adventures. Until next time.

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.

Remembering Our Sweet Girl

Shortly after Sage came to live with us.

In August of 2013 we lost our sweet girl Sage after about 18 months of deterioration.  I realized I never shared about her here and she was a special girl worth sharing.

Always being mauled by her brother

Sage came to us from under a porch at about six weeks old when Joe and I were in grad school out in Pullman, WA.  She was an angry little white puff ball and spent her first three days behind our couch hissing and spitting when we came near.  I had not been around cats since I was a child and honestly thought of myself as a dog person until then.  I had never seen a cat spit before and she was feisty.  Eventually she tired herself out and I was able to scoop her up and set her down out in the living room.  

Aslan, our other kitten the same age from another litter, immediately took her under his wing and showed her the food and litter box.  After that he was always in her space, much to her dismay, crawling into the cat bucket with her/on her for naps.  Joe and I laugh now as we watch our new kitten Lilah do the same thing to Aslan that he did to Sage all those years ago.  But without that little guy with the huge ears we would have had a tough time with little Sagie.

She didn't warm up to us until my folks came out to Washington to visit for a week.  My mom was determined that Sage just needed some extra love and she sat with Sage on her lap for what seemed like an hour one day and that seemed to break away the last of the nervous stray in her.  She was a mamas girl but she was always shy around others and VERY leery when we added the dogs to our family.

Her princess pose

As a blue eyed chocolate point Siamese Sage was always a beauty and would strike poses that said look at me.  She has the most amazing soft fur and I loved snuggling with her and listening to her sweet purr.  When I was pregnant with our first child she would curl up with a paw on my belly at night and purr me to sleep.

Little sage loved the outdoors and while she and her brother are indoor kitties they always had a big window to sit in and watch the birds.  She loved chirping back at them when they came into view.  Occasionally we did let them out to explore while supervised and Sage always pushed the limits of gravity jumping to the top of a six foot fence or wiggling away under things.  She loved to just sit in the grass and enjoy a sunny day.

Sunny outside time

Into tight spaces

Her last big contribution.  Helping Abby with a science project.

Sagie was always a very athletic kitty and seemed to constantly find ways to get herself into trouble.  She loved to play but always on her own terms and would pounce on anything moving under blankets.   Her dad was always teasing her that way.  Even though she was petite compared to her 15 lb brother she could jump higher and father than any other cat I have known.  

One day when we were in grad school still I had a couple girl friends over to make candles and Sage and her curiousity got the best of her.  She jumped up onto the counter where things were drying and knocked over a votive.  I was pulling wax out of her fir for days.

One of my favorite pics of Sage
and Aslan at about a year old.

She was quite curious and would constantly open cabinets and pull drawers out so you could tell where she had been in a day.   I remember one very early morning about 4-5 months before she passed we had her in the bathroom because her bowel control was diminished.  Joe was up early to head to the gym and woke me with cussing because Sage had locked herself in the bathroom by pulling out some drawers.  Having had this happen before I got up and got the drawer back in but that was a rude awakening.

She was also a master hider and with her petite size she could make herself pretty small.  She was able to miss out on a vet appointment because we couldn't find her one day.  

Sage, Sagie Pooh, Poo, Princess Sage... our sweet girl.  It was hard to watch her decline in the end but I would not trade the time we had with her for anything.

Giving Thanks - Much to be Thankful For

Just wanted to pull together a short blog of Thanksgiving for all that 2014 has brought.

I am grateful for everything I have in my life... even though 2014 has dealt me a bunch of downs it has also provided me with an abundance of ups.

I am grateful to finally know what is the cause of many of the strange health issues I have and even with a diagnosis of Multiple Sclerosis (non-fatal, manageable symptoms, and on the radar of some promising research towards a cure) I have found I am stronger than I knew and that I have an amazing circle of people who are there to help me when I have a day that knocks the wind out of my sails.

I am grateful for the personal family struggles that found me as it has reminded me that I have amazing children and a husband who is worth refocusing my positive energy around who all love me so much it overwhelms me some days.

I am grateful to have had the opportunity to be part of an amazing team of triathletes through Kyle's Bikes and Triathlon Racers of Iowa.  They encouraged me when my goals remained beyond my reach and cheered the loudest when I found my way to surprising triumph.

I am grateful to have a fleet of remarkable and diligent health care professionals on my team keeping me running through all the crap my body throws and me and the that I throw at it.

I am grateful to have a workplace filled with intelligent thoughtful people who give me a long leash to continue to make decisions that hopefully make a positive impact on the people I support.  I love my job (even when it is crazy busy and things don't go the way I planed.)

I am grateful for an amazing and crazy and loving family and extended family.  They have an enormous capacity for love and I feel that from across the many miles that separate us and wish we had more face time.

I am grateful for interesting and wonderful friends all across the country with whom I share great memories.  May I cross paths with more of you in 2015. 

I am grateful to share this beautiful Earth with all of you and love the time I get outside taking in all the sights and sounds of nature.

I am grateful for every day I can get up (even if if the cats, dogs, kids or husband wake me before the alarm) and start a new day with a smile and drive to learn new things and have new experiences.

I am grateful to be able to see my flaws and be good with the ones that don't matter, and work every more diligently to refine the ones that do.  I work every day to find the calm in the midst of chaos.

So with that I have rambled on enough but I want to encourage each and everyone of you to open up your heart to all the good things in your life, and work to make the things that drag you down better.

Let the people who are important to you know  and be willing to put yourself out there to make a positive difference in another person's life.  It isn't easy but it is so fulfilling.  So with that I wish you a wonderful Thanksgiving.  I send you my love and wish you peace.