Monday, November 15, 2010

I am ok

Sorry for the last post, but sometimes things just seem completely unfair (I know - insert lecture about how life is not fair).  I needed a moment to wallow before sucking it up and moving forward.  I will find more from the doctor on the Monday after Thanksgiving, so decisions will be made then in regards to having a child. :)

I did have two people offer to carry my child for me, ha that is funny.  Other than that, I need to see in my heart if I am OK with NOT having a child and what that all means to me.  I am not jumping to any decisions; not until I talk with my doctor, my husband, God and myself.  I am sad about this, everyone hopes that getting pregnant will be as easy as it is for many friends - I swear half of them sneeze and they are pregnant.  Unfortunately, like many other things in my life, that is not my luck.  I happened to get a little more than some others and there are people that have gotten more than me, so dang it, I guess that is just the way it is.

On another note, I had 4 days off in a row at work - the most glorious November Fall days I can remember and it was good.  Good for me to rest my body, good for me to rest my soul and good for my household chores :) . 

Thursday, November 4, 2010

And another thing to add to the plate

I was not sure if I should blog on this or not, but hey let it all out...right?!

Some of you know (many do not) that I have been trying to get pregnant for over a year now.  Before the MS diagnosis - before the year of that.  Just something that the hubby and I were ready for.  After 6 years of marriage, finally out of school and finally financially secure - it was that time.  I was told to prep by taking my pre-natal vitamin, sleeping correctly, handling stress (ha, that is funny) and avoiding a lot of alcohol.  3 months into trying came the MS diagnosis, but not a worry, pregnancy is great for those of us with MS.  My neuro was so encouraging, touting studies where MS will actually stand still during pregnancy and even have positive effects later on - something about being able to stave off the cane and possible wheelchair, because those who have given birth actually have less gait (ie walking) issues later on.

So we continued on, many times I thought I was pregnant but was not - those who have been through this know the heart ache.  During this year+ my periods became worse; cramping, heavy bleeding (sorry guys), exhaustion and even frequent periods (like every two weeks).  My OB said to give it a full year and then we would begin testing for infertility issues.  So a month ago I had my year check up and she was not happy with the irregular periods and especially the frequent ones, although she said the stress of the new diagnosis could cause some problems.  So I had the joy of having a pelvic and intra-vaginal ultrasound (yes it is as obnoxious as it sounds) two weeks ago with the PROMISE that results would be the next day.  After waiting for two days for information I finally called my OB.  Oops, their fax machine was down and they had not received the results from the radiologist (just my luck) but they would call and get back to me soon.  Two more days passed and finally a call from the doc.  Oops, the radiologist was on vacation and they did not like his reading of the ultrasound, just another week of waiting and we will know what is going on. 

Another week passed and I find myself in Memphis for a big conference for my industry.  I am one of the lead presenters (which is a big deal), having a great time networking and learning more about my career.  I just happened to be on a break between sessions and my phone rang.  I did not recognize the number, but it was 330 area code so I figured it was either someone from my work or a number that I had lost with the phone change (just got a new phone).

"Hi Julia, this is Dr. Morris' office"
"Yes"
"Remember the ultrasound you had a few weeks back?"
No - I don't remember the condom wrapped dildo that they used to see my insides, REALLY! - I thought.
"Well, we are going to need to make an appointment for you, unfortunately we cannot get you in until after Thanksgiving"
"Ok?"
"Well you see, the radiologist came back with your results.  You have something called a heart-shaped uterus or a bicornuate uterus, do you know what this is?"
No, bitch, tell me - I thought.
"No, I don't"
"Well your uterus is in two halves, basically during your development your uterus did not attach completely together"
WTF - I thought
"What does this mean"
"Well, the doctor would like to talk more about this when you come in after Thanksgiving, but it could be a big part of your inability to get pregnant.  It can cause infertility"
"Ok?"
"It is not very common, it happens in less than 1% of the population, she will give you more detail when you come in"
"There are not appointments before Thanksgiving?" I was more thinking - are you f-ing kidding me, you call me at a conference to tell me I am infertile (after two weeks of waiting) and you cannot get me in next week.
"Sorry, we are swamped"
"Ok, thank you"  More like - who in the hell calls you and then tells you they cannot see you for a month.

So I am not sure what this all means, the WWW only puts more thoughts in my head; those with this problem have a higher incidence of late miscarriage (after 15 - 20 weeks), infertility and mental retardation.  Oh great, another lottery win for me.  First MS, then this.  Wait, wait.  Maybe I should play the lottery since I am so good a contracting this rare and joyous health gifts.

At this point I think the big guy upstairs may be playing a joke on me.  I am super stressed at my job, I have MS and now this.  Really, will I tumble from the plane tomorrow and die?  I just feel like that would be par for course - I mean REALLY!

So, I guess it is another waiting game and more heartache for me.  I just wish that something positive would happen in my life, something really good would come.  I am sick and tired of being sick and tired.  The funny thing is that sitting back and looking at my life, it all seems like a cruel joke.  Those who really know me, know that this is real, but it almost is surreal.  My concern with all of this is my job.  I have a lady at work who has lupus and people always comment about how she is always sick and not in that, oh no, she is sick way.  More in the, she is faking it way.  Even last year when I was going to all of my appointments that come with having a chronic autoimmune disease like MS, a person at my work had the nerve to say that they never get sick.  Well good for f-ing you.

So tonight I sit alone in a two room suite in Memphis.  Laughing about my lot in life (really I cannot cry about this stuff anymore) and drinking a glass of wine.  I will make it, what other choice is there.  Someone said that God only gives you what you can handle, I do not believe that, because some of us get a lot more than others and I am not sure that I am handling it as much as scraping by.

To all my MS blog buddies, you know what I mean, we all have had a hard life.  You can either die or make it.  I guess I choose to make it.

Tuesday, October 26, 2010

Running pictures AK marathon & Towpath

 Before the race sister silliness

Team Julia

 Team Julia and the back of the shirts

Two beautiful women in my life; my sister and bestest

 Taking pictures during the race (yes, I carried a camera)

 Grandma at mile 1

Running with Dad - Mile 7
 Friends at Mile 9

 (Thanks Kim - Pand I at Mile ~24 - note I stopped taking pictures)

The End - Ak Marathon snapped this as we ran in, my favorite pic


Sometimes it is nice to cheer on family and friends on their runs, so Paul and I headed down to the Towpath Marathon - look at the Fall leaves!

 Dad giving me a high five in the Towpath 10K

 My mother-in-law Sue running her FIRST half-marathon (she started running in her 50s)

Dad's Finish
 Sue's friend Diane in her first half marathon

 Sue's Finish

 Sue's finish from behind

P and her chatting

Thursday, October 14, 2010

Akron Marathon Race Report

After an extremely warm week, the weather called for high of 65 and partly sunny for the race.  My whole family and some friends purchased the "I run to stop MS" shirts to run with me during the race (and my mom, grandpa and grandma watching the race).  I felt nervous as always, but I was glad to have my sister, husband and friend to run with me, I knew I could make it with them.

Although this is my third marathon, I knew that my prep was not nearly as on par as other years.  I skipped many weekly runs due to the heat - I just could not get enough energy to force myself out in 85 degrees and high humidity, I literally melt.  My lack of prep combined with my odd races the weeks before, made my nerves jump even more.

Morning of the race went well, saw many of my friends and family and we all got in line with out 'Team Julia - I run to stop MS' shirts.  I felt loved and I always feed off of the energy of the 10,000 runners around me.  The key for me in a marathon is to start out slow.  I always want to get pulled with the crowd, but I have to remind myself - 26.2 miles to go, slow yourself down.  I was hoping to average 12 min/mi this year for a PR of 5 hours, but you know how the best laid plans go...

Mile 1   10.44 (a little fast but mainly flat and easy)
Mile 2   10.57
Mile 3   11.08
Mile 4 & 5 21.33
Mile 6   11.06
Mile 7   11.21
Mile 8   11.30
Mile 9   10.58
Mile 10 13.08 (bathroom break)
Mile 11  12.19
Mile 12  11.31
Mile 13  13.12 (sister started to not feel well - I was still feeling strong at this point and after a pee break I was still hydrated
Mile 14  11.42
Mile 15  11.29
Mile 16  13.20  (at this point my sister was feeling really bad and asked me to go without her and Paul and I went on alone)
Mile 17  11.33
Mile 18  12.24
Mile 19  16.17 (felt really dehydrated and went to use the restroom, uh oh, somehow made a mistake with my drinking or body was not absorbing what I took in)
Mile 20  13.23  (slowing down, did not feel right and could not get a gel in without feeling like I was going to throw up - luckily my friend's Kim and Andy came out to cheer me on and get me moving for the next couple of miles.)
Mile 21 12.36 (moved to run 1 walk 1 - was still moving at a good clip but could tell body was not feeling right)
Mile 22 14.50 (took in electrolytes again, thought I was going to up chuck, sun came out and HR jumped up and I was sweating much more profusely.  I was joined on the trek)
Mile 23 16.38  (could not run without stomach feeling horrid)
Mile 24 18.52  (walking, cramps, stomach problems and Paul was so supportive, was not sure I was going to make it)
Mile 25 20.49  (pissed, now the downhills were keeping me slow, I kept having to stop and stretch and leaned on Paul A LOT)
Mile 26 & .2  17.10 (I tried to jog some and at least jogged into the stadium)

Finish Time: 5:42:42

Not a PR but not my worst race either.  I did not have nutrition dialed in and I did not train to my best ability but I finished.  It was a very emotional finish, somehow all of the feelings of the past year came flooding back and as I took the step over the finish line, I thought about how this could be my last one and that many things are just unknown with this disease.  I was so glad that I came around from from my low energy and on and off symptoms (even at the beginning of summer) to actually finishing the marathon.  I was never once confident that it was going to just happen, but it did.  Wow.  So I have a lot of amazing pictures (I caried a camera the whole way and from good friends - thanks Kim) and I will post a blog with those pictures soon.

Thank you to everyone who supported me through this!

Thursday, October 7, 2010

I am not dead, just busy

I apologize for not posting about the marathon yet - I will this weekend.  I finished but my legs blew out at mile 22 and I did not get my nutrition right this year.  BUT - I finished my first marathon after my MS diagnosis.  I will write more details this weekend.

Tuesday, September 21, 2010

Air Force 10K

As you can see I have a September stretch of races that I do almost every year.  This one is part of the Air Force Marathon and works out in my taper - plus my father was an Air Force F-15 fighter pilot, my brother-in-law is a 2nd Lieutenant - and the Air Force has special meaning to us all.  This year my father-in-law ran the entire marathon, my father the half-marathon, my mother-in-law the 10K; so it was (as always) a family affair.  We had to get to the base (Wright- Patterson) early because with 12,000 runners entering 3 gates, it takes a while to get in.  I was up at 4:30 am and we parked at 6:30.  The marathon and 10K both begin on the same course at 7:15 am, with the half-marathon falling later on a different course at 8:30 am.


This years logistics were a bit lacking; parking took longer (we had to walk a mile in pitch black over a pretty bumpy ground), there were not enough port-o-pots and I knew I was making mistake by not getting to use the rest room before the race started.  Oh well, after a C-3 fly by and a beautiful rendition of the National Anthem the marathoners and 10Kers were off.  

The first half of a mile is on old runway and is bone flat, but that just allows enough warm up before a 250 ft climb in less than a 1/4 mi.  My first mile was a little too fast at 8:48 but my heart rate was a steady 170.  The only problem was that I knew that I would have to stop at a port-o-pot (GI issues).  Dang, about 50 other runners had the same idea and I stood there as the time clicked by.  After the rest room and a little bit of a slow run to get back into it, I hit mile 2 at 14:52.  Err, I knew I was at a great race weight and I had a PR in me, so I told myself to get back in the groove over the slight up and down 3rd mile and finished it in 10:17.  After that I found my legs finally feeling full power and I told myself I could pick up the pace to try to get at least even with my previous 10Ks.  The downhill fourth mile passed at 8:19.  I knew I could not hold that fast but I knew I could try and be around 9:00 for the last two pancake flat miles.  Mile 5 passed at 9:09 and mile 6 passed at 9:10.  I finished the 10K at 1:02:32.  Not a PR for the course, but if you minus the bathroom mile, I was flying (for me).


My fear is that I have had issues at my past two races - side stitch and GI issues - and I am a bit worried about the upcoming marathon.  To top it off I have had flu-like symptoms the past two days (why me).  I know that you never can tell what happens with a race but I am not having a good taper.  :(  


The good news is that I have a few days to rest up, I have my sister, husband & friend from Georgia (Eric) coming to run the marathon with me and help me get through this.  I just ask that the stars align and that at least the race passes without many issues.

If you are coming out this weekend to cheer we will be wearing running banana Team Julia shirts with this design.


Tuesday, September 14, 2010

9 mi Potato Stomp Race Report

One of my favorite races of the entire year.  This grassroots race is at a great price ($12), great time in the year, pretty scenery, challenging hills, lots o' prizes and "has the friendliest spectators around".  In fact two years ago I won the main raffle prize -  a pocket bike.

I was not nearly as scared or nervous as my half marathon a few weeks ago.  The weather was brisk (good for me), sunny and I had already completed a half...no biggie.  I was joined by a lot of the ladies from work.  1 student, 2 graduate assistants, aquatics manager and me - GREAT turn out.  4 of us are all around the same speed, so there was a healthy competition going as well.  I wanted to 'push' it a little harder this year and having some ladies to keep in mind was a good choice.
The race started in the potato stomp traditional manner with all of us running over potato chips.  The first 1.5 miles are down hill and I found myself cruising 9:40(1), 8:50 (2).  The next 2 rolling miles were 9:45(3) & 9:50 (4).  All of a sudden I got a side cramp, not just a little annoying one, but a take- you- down side cramp.  I was frustrated as all of my girls passed me, but I did not stop for long.  I managed to finish out the race at 1:31:20, which is not bad - but I would have been around 1:26 if I could have stayed with my pace.

This weekend is the Air Force 10K followed by the Akron Marathon in two weeks.  Phew, I hope that the weather stays cool!

Tuesday, August 31, 2010

Buckeye Half Marathon

To be honest - I was nervous.  For some reason (even though I have already run 18 miles for training), this race was a benchmark.  Something to see if this whole MS year of crazy was going to keep me from doing the marathon.  Something that has not happened in a year....a half marathon race.

I have had a down and up summer so far.  As stated before, June was filled with a vertigo problem that almost made me give up on training.  I was feeling tired and dizzy and ready to throw in the towel for training and then July hit.  All of a sudden I was able to run 10, 12 ,13, 14 miles....wait a second, my body was starting to respond.  August has even been better - I found myself doing even an 18 mi run.  :)

So here I was Sunday morning, a nice cool morning which I always appreciate, ready to start a half marathon.  The feeling that I had come a far way was just emotional and the feeling that I was lucky to be standing here made my heart race.  I was ready to accomplish something that once was not even a concern to me - it is just a half.

Once again the race was a family and friend affair.  Brandon and Mel were there, as well as Melissa & Diane from work.  My father, my father-in -law, my mother-in-law and some other folks that I have gotten to know over time.  Kim even came out to support us and take pictures.

The race started at 8:00 am and it was probably 60 degrees and nice at that time.  It was a large group this year - somewhere around 1,000 participants and we all walked the 1/4 mile to the start.  Diane from work was interested in running with me, since I was CLAIMING that I was going to use this as a training run, keeping my heart rate at 60 - 70% and staying somewhere between 11 min - 12 min/mile.  Well I did not expect to feel good.

The first mile was a quick one, Diane looked at me with her Garmin and said you know we are running a 9:40/ mi pace.  I smiled and said, let's see what happens.  I knew that I could not maintain that rate once the heat set in, so I thought I should keep myself at a little harder pace to begin with, plus for some reason, I was not dying.  Heart rate was more around 70 - 80%, but it is a race.  Mile 1 - 6 my time was 1 hr and 3 min.  I was smokin' (well for me this year anyway).  I felt good and was ready for the second lap.

For the second lap, it did get warmer, my paced slowed down to a more 11:00 min/mile pace but I was still running.  Not at one point in the race did I feel bad.  I finished with a time of 2:18:34 for an avg of 10:35/mi.  

No this is not a PR, yes I am happy.  Today marked a goal obtained...what will tomorrow bring?

BTW, you still can give money on my behalf to Run MS.  My sister is running the AK marathon for MS and me.  Donate here!


Saturday, August 7, 2010

Diet Update 2 - THE POSITIVES

When I started to research about changing my diet I found some personal accounts of people who exclaimed that with in one week they started to feel changes; more energy and a clear head.  I cannot say that this was the case for me, but over the past 6 months I have seen many improvements.  I also have found that I was not craving the foods that I gave up nearly as much as I had thought I would.  I guess for me, the health of my body was a much stronger pull than food.

More Energy - One of the things that has crept up on me in the past months is more energy.  When I had my first attack I found myself needing somewhere between 10 - 12 hours of sleep each evening and even with the sleep I found myself exhausted every morning.  I felt as if all that I did was sleep and work.  If I had any extra time during the day, I would take naps to keep me awake.  I am not sure when it happened but at some point I found myself with more energy.  Currently, I get around 8 hours of sleep and even less some nights without feeling completely spent.  I also have more energy for extracurricular like exercise and hanging with friends, which is a nice change from this past winter.

Those who have been around me have noticed as well, I have crept out of the zombie land for the time being. Last week I ran 13 miles and I felt a little tired, but my body responded better than I would have thought.  I am not saying every day is perfect, but let's say I have more good days than bad.

Impulse Control & Planning - I would not say that I would over eat a lot, but I know that last summer working out 5-6 times a week- that many times we would go out to eat.  At least once a week at a bar with some fried foods and beer. I am sure that I was not putting the best foods into me.

With this diet I have to plan out food and meals for everything.  When I go on a weekend conference for work.  When I go out for the day.  When I go on vacation.  Lunch (and dinner) for work.  Every time I need a snack.  Every time I am hungry.  I also have to make sure that I have food (just in case).  There is no getting hungry.

Currently I eat breakfast (usually GF/DF cereal and rice mik) at 6 am, fruit at 8 am, almonds or walnuts at 10 am, lunch at noon - 1(lots of veggies; salad with turkey, fruit, carrots), handful of GF pretzels or similar at 3-4 pm and dinner at 7 pm (something different each day - the summer has been a lot of grilling!).  I eat all day, but really it equals less saturated fat, a lot of fruits,veggies, nuts and little to no refined sugar (most days).

I also avoid most eating out times.  I cannot get wings and pizza, I cannot drink beer (drink much really), I cannot stuff myself at the family outings or vacations - I have specific GF/DF stuff (my family has been great to make stuff I can eat). I am eating like I should have years ago.

Weight Loss -This really was a tertiary effect.  I was never planning on weight loss, I thought it might happen but it was not a focus.  In fact in Early May I weighed the same as in early February, if in 3 months I had not lost anything I probably wouldn't.  So I quit paying attention.

All of a sudden my clothes were fitting a lot looser and I was getting comments about whether I had lost weight.  I would not consider myself a giant girl but I was always 'curvy' as they say.  I finally weighed myself and 10 lbs had dropped off since May.  I say dropped off because last year I was working out WAAAAY more.  I spent the year trail running, training for marathons, swimming, road biking, mountain biking, on a two week backpacking trip and this year there were months that I was lucky I put in 30 miles of anything.  I am still only hitting maybe 3 - 4 workouts a week.

I knew this was true, as an exercise science major they always said diet was much more important than exercise for losing weight.  Study after study touting those set up on a strictly a diet change compared with those only on a exercise regimen, continuously lost more weight.  Of course the combination of both is the best.  

No fuzz head - I still have my memory relapses where I cannot spit out what I need to say.  I now think this is directly related to the MS but more on that some other time.  I have noticed a fog that was with me has lifted.  I can only describe it like those days that your sinuses cause the head pressure and you feel like you cannot think clearly.  Now I am a little more alert, focused at the job in hand.  That makes me feel a lot more confident in my job and tasks that I take on.

Really tasting things - Yes this sounds cliche, but I think that I found appreciation of things that sometimes were rushed.  I always have had a love of food, a mother who should have been a chef (self taught) taught me the appreciation of food from all over the world.  Being an Air Force Brat, we had the chance to travel and appreciate food from all over.  In my adult life time got in the way.  Paul is a good cook, but we had our standing meals that were repeated every other if not every week, because we were both tired from working all day.

Everything changed when I decided to do this.  My mother who once cooked delicious home-made macaroni and cheese, is now baking breads and cookies that I can eat.  Paul will spend a good hour or two prepping meals that simmer for hours.  We are using more herbs to flavor than we ever had; the sweet smell of cardamon, cloves, cinnamon from the Indian dishes, to the fresh sage, shallot and parsley potatoes that sit as a side to a fresh bison steak and grilled asparagus.


I want to be clear, I am lucky.  The supportive friends and family who have accommodated to my diet are amazing.  I have been blessed by many.  Paul who has just been taking this as challenge to keep me from craving anything I once had.   My mom who bakes for hours or cooks to bring me over a hamburger buns so that I can participate in the cook out.  My aunt and cousin who are experimenting and making dishes for the family get together.  My friends who will go to PF Chang's (for their GF/DF options), Vegiterranean (Vegan/GF), Altieri's (GF Fried chicken) over and over to just go out with me.  I am so loved.

I also want to be careful as to say this is curing me.  I do not know.  I will not know, really.  I am 9 months into a diagnosis that hit me like a brick wall.  I am still reeling and trying to make sense of everything.  I read blogs about those who have had a rough time of MS, those who are still climbing mountains with MS, and a lot that are in between.  In someway this diet is a bit of control , even if control is just an illusion, but in someways isn't all control an illusion?

Control is an Illusion

Attempting to control external events
will never keep us safe.
Control is an Illusion.
Whatever we try to control,
we separate from ourselves.
Whatever we try to fix,
we ruin.
Life is sacred,
and flows exactly as it should
We return to our breathing.
It knows exactly what to do,
rising and falling without conscious control.
In the same way
We sometimes have excess
and sometimes lack.
We sometimes assert ourselves
and sometimes hold back.
We sometimes succeed
and sometimes fail completely.
Our practice is to see all of this
without taking it seriously.
-Lao Tzu


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!

Thursday, June 3, 2010

Another Run Report - Memorial Day 5K

I was never a fast runner but I had my consistency.  I am a 27 - 28 min 5Ker typically.  Last year at this time I was in great shape, having just run the Fools 25K in spring, I had a series of great races.  Last year at the Tallmadge Memorial Day Race I was at 28:10 for my final.

This year was a bit different.  I did not have the base I had last year at this time and the race was about 20 degrees hotter (or at least it felt that way).  The race started for women at 7:45 am, which usually would get you out before the heat.  Unfortunately, this May has felt like summer and it was really humid and stagnant.

The race began and I felt fairly good, I was holding a good pace and the course slopes downhill.  I passed the first mile marker at 8:45...oops I am going out a little hard.  My pace felt strong as we entered a slight uphill and I passed the second mile with a time of 18:06, a little slower mile but still holding well.  If I keep this pace up then I will be around 28 minutes.  Unfortunately, somewhere right after the second mile my body temperature rose quickly.  The sun felt like it was roasting my skin and I knew I would have to walk.  Damn MS - I hate it sometimes.  I came in with a time of 30:50 - an average of 9:48/mi.  Err :(

I guess I should not complain, at least I am getting to run now.  But it is frustrating that this disease will start taking it's toll on me - possibly coming to a point where I cannot run anymore.  I have been thinking a lot about this lately, what do I do if I cannot be physically active anymore?  I guess running, hiking, riding, paddling were all a part of me - how I define myself in some way.  Most of my friends come from the activities I participate in - my husband and I would spend time together with these things (part of the reason we fell in love).  Life changed the plans and I have some days where that is just difficult to swallow.  It is hard to hear people talk about their training plans and PR goals,when my goal is to just keep running - for as long as I can.

Sorry, sometimes my thoughts stray.  I cannot focus on what I cannot control, I HAVE to live in the now.  I do not mean this for people to walk on eggshells around me, please talk about the positives in your training plans, races you have done, etc.  I will still be a fan, even if I cannot participate, but do realize that sometimes it is hard.

 My sister and I - Sweaty after the Memorial Day 5K

Sunday, May 30, 2010

6 years

Paul and I have officially been married for 6 years the date was May 29, 2004 :)

You know, I do love him more everyday.  I think back, he and I have been through some things and still ended up on top.  He is my rock, my heart and the love of my life!


Monday, May 24, 2010

Weekly Workout Update

Monday May 17 - Sunday May 23
  • Monday May 17 - 5 mi run
  • Tuesday May 18 - off
  • Wednesday May 19 -1 hr indoor rock climbing
  • Thursday May 20 - 3 mi run
  • Friday May 21 - 1 hr indoor rock climbing
  • Saturday May 22 - 6 mi run
  • Sunday May 23 -10 mi road bike, 2 mi run (training clinic for Twinsburg Duathlon
What can I say, my body is coming back (should I be scared to say that?).  But really, my body has decided to like me, at least for this past week.

First, my running has been on track.  I did 3 runs this week and two were a 'longer distance'.  I am very thankful for my HR monitor.  I noticed a huge difference from the cooler run on Monday to the humid warm run on Saturday morning.  My HR shot up and I was forced to a 1 minute/mi slower pace to maintain the same HR from my Monday run (in keeping with the HR training that I am doing). Why?
Heat or high humidity can make many people with MS experience a temporary worsening of their symptoms. Doctors believe that this occurs because heat causes nerves (whose myelin covering has been destroyed from MS) to conduct electrical signals even less efficiently. - WebMD
On Wed and Fri I dragged my butt into the rock gym.  I was reminded that I have not climbed much in two years - my body was definitely struggling more than I might have liked - but it felt really good to be out there though and I am going to try to keep it up for the entire summer.  My goal is to climb a mile (99 times up our 53.5 ft wall) in that time.

I also got out for the Twinsburg Duathlon training on Sunday morning in the dense fog.  It was a nice easy rolling course (10 mi) with a short 2 mi run after.  I felt good on the bike, but was definitely feeling some fatigue on the run - maybe because I worked out more than I have in a long time.