Friday, July 30, 2010

Diet Update 1 - THE CHALLENGES

 I have been meaning to update on my diet- the gluten (GF), dairy (casein) free (CF), low-sugar and low saturated fat diet that I have been on for 6 months now (wow, time has been flying by), it has been a learning experience and I really wanted to see some benefits before I proclaim this is the cure all.  Of course I cannot really know that it is not working unless I get frequent attacks and here is hoping that it is working and I don't have any major attacks anytime soon.


If you have the time, please read this article really explaining why I have chosen to start this diet [here] or this last blog 1 month into the diet [here].

I did not want to touch on the positives without talking about some of the challenges.  AND it can be a challenge at times.:

Eating at other people's homes -  I love all of my friends and family, but with a lifestyle change like this for me, it has been a change/challenge for others (without that being the purpose).  No one can just invite me over; gluten and dairy are in many forms and more than just the obvious.  People cannot have the knowledge base of the months of research that I have done and although they want to be nice - I cannot eat at most people's houses (sorry).  

A lot of friends have learned this quickly when they bought a gluten-free brownie mix  to make me that contain milk or they found a dairy/gluten free mix and realize they do not have Vegan margarine called for in the recipe.  Whey is in almost any margarine, you have to buy a Vegan brand and that means running out and purchasing something that you may not ever use again.  Other culprits of hidden dairy can be found in boxed GF cereals, GF breads, Deli Meat, Vegetarian Margarine (not vegan), and GF protein bars.  Sometimes things will be labled well, so look for gluten-free/casein-free products or gluten-free/vegan products. Gluten can be just as bad and is added into things like soy sauce, deli meat, seasonings, thickeners, malt flavorings, etc. 


Anyway, these things are harder to spot than you think.  My grandfather found this out when he bought some bbq meats at Ol' Carolina Restaurant for July 4th.  I asked him to call about whether their meats were gluten & dairy free.  "Ah, chicken and ribs are gluten and dairy free!"  Sure enough their chicken and any poultry product of theirs contain gluten because of the seasoning (luckily I was good with the ribs).


To get around this, I plan to eat before we hang out with people or bring my own food or invite them over for a GF/CF meal.  Of course that causes its own problems with folks getting their feelings hurt, etc.  In our society many social activities occur over food, well that poses a problem for those of us who have made diet changes.  I can't help but offend some, at this point though the people who really love me will accommodate.


Being around food when I am hungry - I learned this early on, make sure I am never really hungry.  This is tough and means packing lunch, dinner, snacks, etc to make sure that at no point in the day that I feel this way.  Over the past 6 months it has happened twice; one time when my mom had called a breakfast place and they said they could accommodate my diet.  I had run 8 miles that morning, waited for everyone to get ready, got to the restaurant and they really could not accommodate.  I sat there feeling tired, low blood sugar and watching everyone eat delicious looking toast, omelets, gravy, etc while I was hungry.  It took everything in me not to cry.

The second time it happened was just a few weeks ago on our vacation.  I had planned to eat at Wendy's for lunch (I can have their baked potato and chili) before we were to meet some friends at a pub to watch the final world cup game.  I got to the Wendy's and they were out of baked potatoes and chili and I had no alternative plan.  At that moment the weight of the past year landed on my shoulders and I felt how sick I was and how much of an impact this has made on my life.  I was again, almost in tears.


Food is a powerful thing.  If you are hungry, you can forget it, diet changes will be HARD.  As long as I am in the same day to day schedule I am fine, but when traveling or changing things I find myself struggling.  BUT, I have to say over the course of 180 days - 2 have been really hard - well that is ok.


Still liking the taste of things - Just because I started this diet does not mean that things do not still sound delicious.  Some days I want to rip into a crusty french bread loaf and drizzle brie all over it all the while having a few tasty micro brews.  I chose this diet for my health and health reasons ONLY.  I am acting on the strongest self-control that I have EVER tapped in to.  My secret?  I imagine myself putting lesions on my brain with every bit of dairy and gluten that I eat.

We cook A LOT - This is both a good and bad thing.  Good because I am exploring cooking like never before, I change the menu a lot to keep it interesting and I find that the meals we make are ususally gourmet & delicious.  Bad because when you work a 60 hour week, sometimes energy is tapped and the idea of cooking just wears on you.   I also have to plan the meals for the week - sit down make a plan, write down all of the ingredients we need to buy and then go grocery shopping, phew...I should win an award for organization.  :)

The cost of groceries has sky rocketed -  Yeah, when you eat pounds of fresh fruits and vegetables (usually try to get organic and right now we are paying into a CSA) and your diet requires special GF/CF purchases, you find that the cost has almost doubled when we go to the grocery store.  However, we are not eating out much, so I guess it evens out.  Sometimes the sticker shock can get you.

I also have incorporated a pile of supplements; Morning - Multi, Acidophilus, Vit B12; Lunch - Calcium; Dinner - Omega 3-6-9, Vit B12, D3 and Calcium.  If you know about supplements, then you know that they are not cheap...especially because I take so many.




This seems like a lot of negatives, but really the positives to outweigh any issues stated above.  I will write another blog about the positives in the next few days.



Friday, July 16, 2010

The past few weeks

Mourning the loss of your dog is harder than I had imagined.  It took over a week for me to not cry at least once a day about it.  Those emotions have been stretched out lately, but they are still here - I guess you never stop loving or missing someone (even your dog).

To keep me from falling into even more of a low than this year has already beat me into, I managed to work extra and go on vacation.

Vacation was wonderful - I went to Florida to visit my sister in Pensacola.  Usually I would avoid going to FL at the hottest time of the year, but I also had the chance to meet with 5 of the people that I hiked the AT with (and that never happens).

So without further time, here are my past few weeks in photos (some of vaca - some of just stuff).


Lauren and I at PHISH
My sister's car getting saran wrapped by her students

AT Reunion at PF Chang's in Gulf Breeze, FL
Ketchup doing her favorite thing - eating Ketchup ;)
Blue Angels on Pensacola Beach
Me with a Blue Angel in the back - notice how dark the water is...oil. :(
Sis and I - water still dark (on this side of the beach)
The light sand is what the beach should look like, the dark part is oil water residue
An oil glob
Hilton Sign on your way back in...
Where we got fresh fish for the week - yum, yum
Paul and I on a non-oily section of the beach
More Blue Angels at the beach (we saw them twice)

Em and I at Fort Pickens National Seashore
Paul and I getting in the water

As for other things, I managed two runs while in Florida, one 12 miler in extreme heat and humidity (that I survived it was amazing).  Also, my diet of no gluten & dairy has been going strong, I have been meaning to write a blog about it - one of these days.

Saturday, June 26, 2010

In memory of my dog Mingus

Mingus "The Bean-er" Neal May 1997 -  June 26, 2010

There are no words to describe the love I have for this dog.  She was such a loving, sweet creature.  She became part of my life when I fell in love with Paul.  Paul's strict nature with her made it so that I bonded with Mingus right away.  She knew I was the one that would melt when she begged for food or let her on the couch when I was cold.  I realized quickly that she would snuggle better than anyone, nuzzling her head into my arm and resting her body heavily next to me - we could lay like that for hours.  She trained with my sister and I when we would hike 10 or 15 miles at time, getting ready for the Appalachian Trail.  When I started running, Mingus ran with me. She was so energetic and happy that I would only have to wear some running or hiking clothes and she knew what to expect.

People-ing as we call it (she would do this in crowds, almost acting like she was a person)

She was also there for the tough times.  When I found out my father had cancer and cried alone at home, she knew.  She put her head on my lap and looked at me - almost as if to say she was sorry.  When my MS diagnosis came, she became my solace.  The times that I would cry alone, she would let me hold her and lick my arm.

Hanging out with Pollen (cat)

It has been about a downhill year for Mingus.  She was first diagnosed with a slow growing lung cancer in October (one week before my MS attack)...it was devastating.  Her mind has been going this year as well.  This once even keeled, loving dog who enjoyed everything became fearful.  She started to have separation anxiety when we left for work; she has been knocking over furniture, pulling down couch cushions and hiding in the basement on our dirty laundry.  The dog who traveled the country, now shakes and pants violently when we drive even a short distance.  She is not happy and it took a long time for Paul and I to be OK with that.  We needed to put our feelings aside and think of her.  This is the right decision - just not easy.

 Mingus running (so sleek)

Today we said goodbye to a family member.  There will not be another one just like her.  Goodbye Dear Friend.

Her last hike with me (yesterday)...

The Power of the Dog

There is sorrow enough in the natural way
From men and women to fill our day;
And when we are certain of sorrow in store,
Why do we always arrange for more?
Brothers and sisters, I bid you beware
Of giving your heart to a dog to tear.
Buy a pup and your money will buy
Love unflinching that cannot lie--
Perfect passsion and worship fed
By a kick in the ribs or a pat on the head.
Nevertheless it is hardly fair
To risk your heart to a dog to tear.
When the fourteen years which Nature permits
Are closing in asthma, or tumor, or fits,
And the vet's unspoken prescription runs
To lethal chambers or loaded guns,
Then you will find--it's your own affair--
But ... you've given your heart to a dog to tear.



When the body that lived at your single will,
With its whimper of welcome, is stilled (how still!)
When the spirit that answered your every mood
Is gone--wherever it goes--for good,
You will discover how much you care,
And will give your heart to a dog to tear.



We've sorrow enough in the natural way,
When it comes to burying Christian clay.
Our loves are not given, but only lent,
At compound interest of cent per cent.
Though it is not always the case, I believe,
That the longer we've kept 'em, the more do we grieve:
For, when debts are payable, right or wrong,
A short-term loan is as bad as a long--
So why in--Heaven (before we are there)
Should we give our hearts to a dog to tear?


-Rudyard Kipling

 The way that I will always remember her

Wednesday, June 16, 2010

Summer is passing by

Where is it going?  Work and not feeling well.  

Ever since the week before the Twinsburg Duathlon I have had major vertigo, nausea (from the vertigo) and electric shock that runs my body when I lower my head.  GAWD!  I still managed a few workouts (including an 8 mi run) but not enough to really give you guys a weekly update.  My body is just so exhausted after working that I barely stay awake past 8 pm during the week.  I am ready to do things on the weekend, but something about mid week workouts has been tough.  

I was joined in my misery last week when my husband had tooth pain for an entire week (he finally went and got a root canal).  We were a fun bunch - me trying to eat with the feeling like I was going to throw up and him trying to only chew on one side.  We looked a little "special" if you ask me...hehe.

The new electrical shock symptom is called L'Hermittes Sign.  It is to difficult for me to describe so here is WebMD's description.
Lhermitte’s sign (also known as Lhermitte’s phenomenon) is the name given to a brief electric shock-like sensation that occurs when flexing or moving the neck. This sensation radiates down the spine, often into the legs, arms, and occasionally, the trunk.

At some point, about 38% of individuals with MS will experience Lhermitte’s sign, sometimes as a presenting symptom.  In MS this sign is considered a sign of active lesions on the cervical spine.  Lhermitte’s sign was named after Jacques Jean Lhermitte, the renowned French neurologist and neuropsychiatrist who first characterized it.

Note the bold area - am I supposed to assume that if this is true I am in active attack mode? :(  Dang it!  I am trying so hard to stay above everything with proper diet, a pound of supplements (or at least it feels that way) and extra sleep.  BUT, my stress levels are not down at work and I do not know what to do about this.  I wish we were rich and I could quit my job and take care of my body like I need to...but doesn't everyone?  Dreaming that I won the lottery won't help my stress levels - I just need to figure it out.

As for good news, I have amazing friends and family!!!!  I pretty much suck to be around lately and yet my hubby tells me I am beautiful and wonderful daily.  The women at my work try to protect me from the stress and send me beautiful notes telling me they will do anything to help.  One of my bestest friends Lauren (who is a massage therapist and gives me regular Reiki and massage treatments) - took care of me during a concert that was way to hot and I lost vision - she held my hand to make sure I got everywhere safely.  I am blessed, beyond belief by those who surround me...I just wish that I could make sense of it all.

A lot of MSers say to stay positive, but that sure is hard when you feel like shit.  I am trying, I really am, it just wears me down.

Tuesday, June 8, 2010

Twinsburg Duathlon Race Report

The morning of the race I woke up at 3:45 am not feeling really hot.  The past week has given me a new symptom - vertigo with a side of nausea and it had woken me up for the past few nights with the feeling like I might throw up.  I sat on the couch contemplating whether I should do the race or not - well I paid $50, I have to try.  I looked at my favorite quote:

"It is not the critic who counts: not the man who points out how the strong man stumbles or where the doer of deeds could have done better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood, who strives valiantly, who errs and comes up short again and again, because there is no effort without error or shortcoming, but who knows the great enthusiasms, the great devotions, who spends himself for a worthy cause; who, at the best, knows, in the end, the triumph of high achievement, and who, at the worst, if he fails, at least he fails while daring greatly, so that his place shall never be with those cold and timid souls who knew neither victory nor defeat." --T. Roosevelt, 1910

Reading it always reminds me that trying is better than giving up.  "Suck it up" I thought.
Heading up to the race with my dad it poured on us, and not your typical rain, it was torrential with the threat of golf-ball size hail until noon.  Shit!  I cannot see without my glasses, but if it is raining, I cannot see with them either.  I was going to start the race and if it was raining when I got into transition, I could make my mind up if I would stop or not.  Sucking it up does not consist of being stupid, the last thing I need to do is not see and fly over my handle bars on a pot hole.

7:30 am the race started, I was still feeling kind of sick so I started the run really slowly.  I watched as the crowd flew past me. "Oh well, just keep plugging along."  I finished my run in 18:52 and was out of transition in 20:00 flat.  At this point the weather was still holding, in fact the temperature was nice and cool and VERY breezy.  I felt really good on the bike, I had only one person pass me and I passed at least 40 people. There seemed to be a headwind no matter which direction you turn, but I still was enjoying it.  I came in from the bike at 41 min and out of T2 by 42:57.  Of course on the run I felt slow again and many of the people who I had passed on the bike, passed me on the run...but hey, I am slow.  I came into the finish with a time of 1:23:47 (final run time was 20:50) and good enough to be 4th AG, missed third by 30 seconds.

I have decided that it is funny that I continue to run, I am such a better biker - but it was a good race.  I felt fairly good, my nausea went away during the race and for an hour after, so that is good (some weird quirk of the MS).  My father and father-in-law placed, it never rained, it was a fun course...what could be better?
As for my performance, I owe it all to the cooler weather and no rain!  Yay a positive race report.

Weekly Workout Update

Monday May 31 - Sunday April 6
  • Monday May 31 - Tallmadge Memorial Day 5K
  • Tuesday May 11 - off
  • Wednesday May 12 -3 mi run
  • Thursday May 13 - off
  • Friday May 14 - 7 mi run
  • Saturday May 15 -off
  • Sunday May 16-Twinsburg Duathon (2 mi run, 10 mi bike, 2 mi run)
This week went fairly well, although the heat and humidity this week reminded me that I have to be careful.  My sister was in town and she joined me in running on Wed (National Running Day) and  with me for my long run on Friday (got up early to avoid the heat).

I had a good time at the Twinsburg Duathlon and will write a race report here in a day or two.

Saturday, June 5, 2010

Invisible Disabilities

I came across this at 3:45 am, another evening of lack of sleep and frustration.  Although this is not true for me all of the time, it is invaluable as I progress (or anyone you know progresses) with a long term disability.


I Never Know
What to Say or Do!
Learning How to Encourage and Help
Someone Living With a Chronic Condition

Copyright © 2004 The Invisible Disabilities Advocate


Have you ever wanted to encourage someone living with a chronic illness, but it seems like you never know what to say? Moreover, when you finally think of something you just know will make them smile, do they snap back at you with frustration?

Well, you are not alone. Because we truly want to help our friend or family member with a chronic condition, we often try to think of just the right words we can say to make all of the pain vanish from their life. If we can just “fix it” then we will not have to see them suffer anymore. Unfortunately, when we do try to come up with a quick answer, we often end up saying something that seems to irritate or offend our loved one

It is difficult to understand why they got upset, because to us what we had to say should have been helpful. Nonetheless, if we could simply jump into the life of our loved one, then we would see why our well-meaning comments were not so well-received. Often, it is our intention to help them “see the bright side” of their situation, so they can realize it is “not that bad.” The problem is that we have then failed to acknowledge their battle is very real and we have gone on to minimize its impact.

Sometimes we even try to point out another person who is “worse off” or try to relate by saying, “Ya, I am tired too.” Often, we disregard their limitations by attempting to talk them into doing what they know they cannot or should not do. Because we forget how anguishing it is to be ill and laid up, sometimes we even try to tell them “how lucky” they are to not have to work or clean their house.

What’s more, we cannot resist acting as if solving the problem is so simple when we exclaim, “why can’t you just take this or do that?” Likewise, we want so badly for them to be feeling better, that we refuse to hear the truth and do not allow them to be open and honest with us about what they are going through.

Besides not knowing what to say, we often do not know what to do. We often wish we could do something to help, but do not even know where to start. Our own lives can be so overwhelming and busy that we could never fathom having the time to run errands, do chores and help clean someone else’s home too!

Nevertheless, what we fail to realize is that what might seem like an insignificant effort to us, may save our loved one an entire day or even week’s worth of energy. For example, we can pick up a few things at the store while we are already there and take out the trash when we drop them off. We can drop them by some fresh flowers, deliver a meal, bring over a video to share or pick up their dry cleaning. None of these takes much of our time, but it can make a world of difference to them!

In all, we can never fully comprehend what it is like to have a chronic condition, with all of the loss and pain it poses. Yet, we know we would not want to feel this way ourselves, so surely we can see what courage our loved one displays! We can even try to remember what it is like to have to put our lives on hold for even just a few days and tell our loved ones how amazed we are at their strength and perseverance!

People living with chronic illness/pain would never choose to willingly give up activities they used to enjoy! In fact, they would do just about anything to get their lives back! Therefore, we can rest assured, knowing they will keep fighting, researching and pursuing ways to regain their lives or at least prevent further progression of the disease.

Yes, acknowledging what is happening to a loved one means having to deal with all of its pain, mourning and changes, but do not sell yourself short! After all, if they are forced to live with it, we can certainly choose to live next to it!