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. 

Adventure in Gardening - Post #2 War Against Nature

Before Fences

The day after my kids and I planted the first set of starts in the garden we had a cold snap.  It was windy and the temperatures went down into the high 30s.  Needless to say about a quarter of my starts did not make it through the week.  The other issue I had the first week was a big ol bunny.  We got a fence up around the lower garden but did not get one up on the raised beds and this bunny was snacking well.

So I made a trip to Lowes for a bit more fencing to protect the gardens from scavengers.  I've never had a bunny problem in the past.  I guess my dogs are getting too old.  :)  In the fading hours of the night I got the fences up around the two main beds.  The third bed is mostly strawberries with a couple of rows of bean and peas on the end.  

I also made a trip to Holubs our local plant shop to pick up a few more plant starts to replace the ones that died in the cold or were eaten.  The kids and I planted many of these by flashlight that night.

 I had to come back during the light of day a few days later to reinforce the fencing but it appears to be keeping the bunny and the dogs out.  I also mixed up a homemade fertilizer of coffee grounds and eggs shells I had been saving through the winter.  I haven't tried this with regularity in the past so will see how it goes.  It was stinky stuff so wasn't sure if that would attract animals or run them off.

So far everything seems to be growing so hoping with a few more warm and sunny days mixed with rain things will really start to produce.  The one thing we are seeing rapid production of right now is strawberries so I try to go poke around in the bushes for berries every couple of days.  The strawberry bed has been growing back there four or five years now.  The peas and beans that are in there are also growing very quickly so looking forward to them maturing over the coming weeks.

Tomatoes, Kohlrabi and Broccoli freshly fertilized

Here are a few pictures of things post fencing and fertilizing.  I am rather a forgetful gardener.  I don't always remember what I planted where, and I don't always remember to water or pick the vegetables and fruits I grow, but this year I am trying to leave myself reminder notes and seem to be keeping up with things so far.

I may still need to bring in some peat or something to put in the beds.  I tried mixing in some straw I had with several of the beds to see if that makes much of a difference but really it just makes it harder to weed so may try doing straw in the fall when I put the garden to bed rather than in the spring.

Kale, Kohlrabi, Spinach, Carrots, and Chard

Sweet Potato, Squash, and Peppers

Beautiful bleeding hart that reminds me
of the wonderful people we left behind
in Washington state.

 The last thing I thought I would share is an update on some of the fun we are having in the perennial beds around the house.  The new plantings I mentioned in the first garden post in the front year they are doing well.  Stay tuned... blogging about the garden may just keep me attentive this year.

The oldest perennial bed in the back yard.

Beautiful Irises in the front of the house.

Lavender and ladies in the front yard

Gorgeous Chocolate Columbine in the side yard
These were a great sale find last year and are
flourishing.

Peonies from mother's day
 last year blooming brightly.

Herbs in the herb garden on the front porch.
parsley, cilantro, basil, oregano and mint

A few fun plants the kids and I picked up
at the ISU Reiman Garden plan sale.
Fushia is another PNW reminder.

Adventures in Gardening - Post 1 - 2015

Mowing the crazy tall back yard

The new squash garden ready to plant

Joshua was fantastic help in the front yard with unloading our mulch and dirt from my Dad's truck and preparing our new butterfly rock garden in the front yard (yet a bit more not to mow).  We got some of the rocks from my friend as well and have enjoyed the fossils and pretty minerals and colors in them.  We still have a tree to purchase and plant where the two rocks are on the end but I have blown my May plant budget.  :)

The new butterfly garden in the front yerd

We've been working hard to bring soil back to our older raised beds.  We have three 4' x 8' x 20"h boxes where we grow our tomatos, beans, strawberries and other wonderful veggies.  These always take some time with a spade and the muscle to get the weeds out and make them ready for planting.

We also spent some time replacing most of the brick pavers in the front yard with rocks and refreshing all the perennial beds.

Our last major effort before planting garden starts was getting getting some potted herb gardens and flowers planted for the front porch.  So far they are doing well and hopefully we will remember to water them regularly so they flourish on the front porch.

Stay tuned for updates on the plant starts and how the garden grows in my second installment.

Blossoms on the Apple Tree were lovely this year.

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.