The Feels, Crawling Towards the Light

Lately I've been pretty introspective.  Challenges and changes in my life have been stressing me out and I find myself sad, frustrated or over critical of myself.  

Am I doing everything I can for my kids? Am I volunteering enough, feeding them right, keeping them away from too much screen time, making sure I spend enough time with them?  Keeping them from over allocating themselves?  Am I providing a nurturing environment? Do they have enough gratitude?

Am I doing my best to move my projects forward at work?  Am I being a good mentor?  Am I doing enough outreach in my geospatial community?  Am I communicating my personal career goals to myself and my leadership?




Am I being a good partner?  Am I creating too much of a burden for my partner, friends and family?  Do I ask too much or not enough?  Am I being a good friend to the people and family that mean the most to me?

Am I managing the money I have for the right things?  Does it make sense to find a second job?  Does it make sense to turn part of my home into an income space? What do I need to do to meet my financial goals?

Am I taking care of myself?  Do I need to keep seeing a counselor to talk through things?  How broken am I today?  Am I getting enough quality sleep?  Am I getting enough exercise?  Am I staying away from the foods I know make me feel crappy?  Am I making downtime so I can rest?  Am I making time for friends and fun?  Am I doing my part to make the world a better place?  What do I want to be when I grow up (life goals)?

These are the many questions that some days make me want to go back home and crawl into bed.  But I don't... I get up and put on my best face.  I download my insecurities to my closest friends and my counselor but letting them also know I am okay because I acknowledge I do not have all the answers, and I make mistakes, and I am a bit broken but I feel good about who I am and where I am going even if sometimes I am VERY impatient with myself.

Last night I went to an Indigo Girls concert.  It was money spent I really didn't have but I wanted to take the three most important people to me (who aren't blood relations) out to do something that would lighten our loads and be fun.  The great thing about the IG is that they are wonderful story tellers, and wise women.  There were several songs they sang that talked about embracing the light.  From Prince of Darkness "I tried to make this place my place, I asked for Providence to smile upon me with his sweet face, But I'll tell you My place is of the sun and this place is of the dark (By grace, my sight grows stronger and I will not
be a pawn for the Prince of Darkness any longer)"

Another song that caught my ear was It's Alright "And for everything I learn there are two I don't understand, That's why I'm still on a search through the weather strewn church, I'm doing the best I can and it's alright, And it's alright though we worry and fuss, we can't get over the hump or get over us, It seems easier to push than to let go and trust but it's alright, When we get a little distance some things get clearer"

So I continue to wander down the path with a vision of where I want to go, but no clear idea of the steps to take to get there.  So sometimes I get jammed up pushing things along when I should really let go and trust that the small decisions along the way really will be fine.




I know I am pretty lucky (and extremely grateful) I have a wonderful family and extended family who have been with me from the start.  I have a handful of really amazing friends who get me and love me and pick me up when I feel like lying down on the ground and letting the river of life flow over me.  

This past year has made me more humble I hope, and probably not less stubborn, however more willing to ask for and receive help, and more accepting of others and the things they are fighting through (still working on that part with my ex but it helps my honey give me good perspective.)

                                                                          So I leave you with a few things I am grateful for... I am grateful for the hardships

Which reminds me of the Andy Grammer song I wish you pain "It's hard to say
But I wish you pain, I love you more than you could even know, Been here before and I just wanna see you grow"
I am grateful for a good job, a nice house, the ability to support my family and take care of us even when times feel tight.  I am grateful for the adventures we get to have together.  I am grateful to have an amazing love that is helping me grow into the person I want to become and growing with me.  I am grateful for the nature Iowa provides (despite the weather) with beautiful sunrises and sunsets, trees, stars in the night sky, and the promise of another day. So I leave you with the quote (above left) and ask you to be kind to each other, and support each other, and love, because tomorrow is another day and we can try again.

As always, thanks for reading.

MS Update - The Invisible Enemy

Life has been roller coaster of ups and downs since my last post. We had the holidays roll through, the start of a new year, and all the other activities that fill up a week and leave me mentally begging for time in a quiet cabin with a pile of books and a yoga mat by myself. But alas the demands of life (work, kids, spouses, pets) while wonderful and things I am grateful for continue to take away from things I want to do and downtime my body needs.

The funny thing about MS is that unless your disease has progressed, to bystanders, it is hard to tell there is an invisible enemy dragging you down. The last week has been tough for me. I know I have mentioned in past posts that what I struggle with what you can't see. The bladder urgency issues that mean I can't wait until the last minute and if you see me racing towards a restroom please get out of the way. Of course the restroom in my building is closed for three days so I have a flight of stairs and an extra 50 yards to go to get to the closest one. Fortunately bladder issues come and go so I may have a few weeks or a few months between bouts.

When I am having what I call a flare up, I can also have muscle weakness on my left side. This effects my walking gait a bit and can make me a little wobbly. It also effects my hand strength and my ability to grab and hold on to things with my left hand. During a flare up I also get incredibly tired. I take an herb called MitoQ that helps with that so the flares end up being less intense and not as long but part of that makes me worry it allows me to push too hard.

I won't stop taking it though because my most frustrating unseen symptom is what I call swiss cheese brain. Yeah I'm getting older and yeah some of this supposedly comes with the territory. I guess I disagree... let me give you an example. I had three weeks of no herbs between refills as my MitoQ comes from New Zealand. I was in a meeting at work and my boss had to step out so he handed me the dry erase marker to keep writing down ideas on the white board. I was in the middle of spelling a word and completely lost the last five letters. I had to ask my coworkers for help finishing (yes I am a bad speller, no that isn't was going on here) It seems my brain is often on a five, ten or thirty second delay so patience is important if you are waiting for me to extract something.

The National MS Society has done some great videos on invisible symptoms so if you have the time and are interested in learning more check out the links below. I just wanted to give you all something to think about today. What you see on the surface doesn't always paint a clear picture of what is real. This is true for people who struggle with MS, cancer, depression or any other illness that doesn't always leave a mark on the surface. Take the time and patience to learn about what is real. As always thanks for reading... now if I could just get the kittens to let me sleep until the alarm goes off that would be super!

Here is a scientist take on MS fatigue I thought was interesting... “Fatigue is something we all have, but lassitude is related to myelin damage itself," Burks says. "The myelin’s job is to insulate the nerves so that messages get through quickly. When the myelin is damaged, the messages don’t get through as quickly. It takes more energy, and the energy that it takes can cause people with MS to get overly tired.”

http://www.nationalmssociety.org/Programs-and-Services/Resources/Invisible-Symptoms-in-MS-Part-1-(video)?page=1&orderby=3&order=asc

http://www.nationalmssociety.org/Programs-and-Services/Resources/Invisible-Symptoms-in-MS-Part-2-(video)?page=1&orderby=3&order=asc

http://www.everydayhealth.com/hs/multiple-sclerosis-symptoms/invisible-ms-others-cant-see-symptoms/

MS Update - Being my own advocate

Quote for the month – “Run when you can, walk if you have to, crawl if you must; just never give up.”

~ Dean Karnazes

This week I had the pleasure of going to an MS talk hosted by a couple of MS drug companies.  I was excited about this one for a few reasons: it was in Ames (most are in Des Moines), it was a presentation by one of the best most respected MS specialists (neurologists) in Iowa, and it covered the use of MRIs with MS treatment.

So here is a little back story about a conversation I had with my neurologist here in Ames in February.  Most of the MS survivors I know get MRIs at least once a year if they are in the first 5 years of diagnosis so I inquired about why my doc didn’t refer me for an MRI as it had been a year since my last one.  My last MRI showed active disease growth which is one indicator of disease progression.  He said as long as I was wasn’t experiencing any severe new symptoms that I was probably responding well enough to the meds I was on but he said if I wanted one the next time I saw him to ask.

The other thing worth noting is the meds I take three times a week often make me feel crummy for a week each month, so so for a couple weeks each month and generally good for a week or so each month.  They give me headaches and make me achy that generally over the counter meds don’t seem to help.    I mentioned in past posts that it is tough to take a med to keep from having a relapse that does permanent damage when the side effects make  me feel kind of crummy.  At the presentation the neurologist mentioned that the drug I take has a lower dosage option.

After the meeting I touched based with my neurologist about doing an MRI before my next in August and it is all set up now.   Hopefully the scans will show no active lesions and we can talk through going to a lower dosage which has the potential to make me feel better more often.

Several of you donated to my ride last year so I wanted to let you know that I am riding again this year.  My goal is to ride 50 miles on June 27^th.  The link below is where a donation to support MS Research can be made on my behalf if you are interested and able to do so.

http://main.nationalmssociety.org/site/TR/Bike/MNMBikeEvents?px=13447566&pg=personal&fr_id=25324

This is just a small step to reaching my season goal of racing in my second half ironman triathlon (1.2 mile swim, 56 mile bike, 13 mile run) on September 13^th. 

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.