To marathon. or Not

I had it in my head that I wanted to do the AK marathon again this year.  In my mind I am thinking, 'what is the difference between last year and this year except that I have a name for what was happening to me'.   

At the same time there is this fear that I did not have before, the fear that I will get another massive MS attack and that I will hurt myself by training too hard.  I remember the day that my headaches started, I had done a small (3 mi) trail run in which I felt way to overheated and slow for my fitness level.  Was that a sign I was not picking up on, was my body telling me something, did THAT particular trail run cause my MS attack?


Errr!  These are the times that I wish that I could go on pretending that nothing was wrong and wishing that I had never gotten that MS diagnosis.  I do not want it to interfere with the things that I love, MS is so unfair at times.

I guess I will type out my marathon training plan, start it, and hope for the best.  I have until August to decide if I can do it and see if my body is cooperating, that is my deadline for signing up.  Fingers crossed and positive outlook (big girl pants as well), that is all I can really do.

Em & I finishing the AK marathon 9/26/2009 almost 2 months to the day before my diagnosis.

What, you can't have beer?

I gave myself until the end of January to get everything together for my gluten-free and dairy-free lifestyle.  I decided to hold off on going Legume-free, because it is difficult to give up so much at once, but I am moving forward on the new diet changes.  I started this month off by beginning to experiment with recipes, menus and what to eat for snacks for all of this new stuff.  Actually it is a lot easier than I thought, as long as you cook with simple fresh ingredients, it is pretty easy to eat well.

If you know me then you know that the two biggest things that I have to give up is beer (I love a good beer) and cheese (brie, sweet brie).  There are no good substitutions for either of these and I am going to have a bit of mourning before I am ok with that.  A few years ago when I was watching LA Ink, a guy came in to get a memorial tattoo of cheese.  He had had a major car accident which left him without part of his intestines and he could no longer digest the lovely, gooey cheese which made him happy.  So he decided to get this memorial tattoo, to really express how much he LOVED cheese.  At the time I thought it was hilarious, but I can now understand the sadness of giving up something that you really enjoy.

So if you want to be nice to me, please do not state how sucky it is to be giving up beer and cheese, I KNOW, trust me.   But not as sucky as losing my battle with MS.

Goodbye dear foods

Balance Act

I have not updated much this week.  Work has been rough and I am worried that I am falling into my old habits.  When my MS attack happened in October, I was working consistently 50-60 hours a week.  Now that may not seem like a lot to some people but keep in mind, I only make $30,000 a year.  My neurologist kept emphasizing to keep my stress down and when I work that many hours, I feel like I am always playing catch-up; with sleep, eating, working out and just life in general.  How do you keep a job that expects that type of hours and still take care of yourself?  I am still trying to work that all out.  Am I crazy to be thinking about having a baby too?  Goodness.  How do people do it all?

I am scared that running myself ragged will cause another attack.  I also do not want to give up my workouts (they help as much mentally as physically).  What to do, what to do?

My Body is Able

I never thought much of exercise mantras, probably because I have never been very competitive.  I love a good running race or triathlon, but I guess I was never fast enough to get SUPER aggressive with it.  After a complete switch in focus of training (trying to keep above MS and take care of my body at the same time), I realized a mantra was just what I needed.

The other night was my longest run to date (3.5 mi-I know sad), and at 3 mi I felt completely exhausted and a bit upset that my body was failing me.  To myself I repeated,"My body is able," over and over until I finished my run.  I was amazed at how that allowed me to dig deep and finish.  I finally see what they mean by sports psychology.

New Year and New Beginnings

Well the nine days off were nice.  I enjoyed a great holiday with family and the days off allowed me to really get some time for myself.

Christmas day was wonderful.  It was truly family time as my sister flew in from Florida on Christmas day.  We had not had a chance to be together since my final diagnosis.  It was a day of love and eating.  I received many wonderful gifts and the two items that I had asked for (which is surprising because Paul and I had decided not to exchange gifts).  My parents must have been paying attention and they got me a Suunto Heart Rate Monitor and a slow cooker.  

The hope is that the heart rate monitor will keep me in a good zone for training and keep me from getting too crazy during my workouts.  My doctor said to be careful with my heart rate getting too high (which I am still feeling out what the "too high zone" is).  If my heart rate is too high I will experience something called Uhtoffs Symptom in which my MS symptoms could become exaggerated due to high body temp.  Ironically, I am already experiencing this when I run.  Once my heart rate goes into Zone 2, the eye in which I lost sight gets worse (similar to where it was when I first lost sight).  So it was pretty funny during my four runs this week, I would lose vision and then stumble around because I could not see the difference between the trail and the snowbanks (snow is especially difficult when vision is lost).

The key to the last week off was the amount of working out that I did.  Compared to three months ago it was not much, but in a time of nothing I managed 4 runs and 1 hike this week (thanks Em).  I got my butt into working out mode again and I have a lot planned this week, hopefully my body will be ready for the Fools 25K in early April, but I am just glad to be doing something almost everyday.


I am off for my first swim in at least 3 months, yay for getting back to the grind.

Fear is a driving force

I heard really sad news today and it was a blow to the positive swing I have been on (don't worry I will not stay here long).

I had mentioned once before that my best friend's mom had MS.  Although she never had huge physical symptoms (gait issues, numbing, etc) she had noticed lately that she was definitely having cognitive issues (having issues speaking, remembering basic things).  Well today after an MRI, she received the diagnosis of beginning Alzheimer disease (basically the cause was MS).  In a year's time she has doubled the lesions on her brain and although she seems fine physically, she is now officially in a progressive form of the disease. I feel sad that I was not more caring and aware of this "hidden disease".  Now, after 14 years of friendship with her daughter, I am able to understand how scary this all is, but is it too late?  I cried talking to my BF as she deals with the fact that her mother may at some point forget who she is, who her granddaughter is, who SHE is.  What kind of life is that, not one that I want to sign up for.

MS is known as the "invisible" disease as it is not obvious by looking at someone that they have it.  Most people do not have clue how MS affects a person (me either, really).  Even newly diagnosed, I find myself stumbling to explain how I feel most times and it is easier to not mention when things pop up as to not come across as complaining (people tire of hearing all the things that are wrong with you-they have their own problems).  This is a tough place to be in; you don't feel well (tired, vertigo, numbing, pain shooting through the legs, cognitive issues, etc) and you don't want to be that person who is always whining.  I also tire of people thinking they know what is best for me - I have been exhausted for months and someone tells me I should get more sleep (cause that will fix EVERYTHING).

NO, I am the one dealing with this, do not tell me how to be!

Anyway, I just want to say that MS is scary and I fear what is to come (daily).  It is the force behind all the changes that I am making in my life, as I try to take control of something that is really uncontrollable (and that is scary in itself).  I know that life is unfair, I get that, I just don't always have to like it.

I leave you with a video for World MS Day (this year May 26) which made me cry.  This is now my life and sometimes that is hard to take.

CSA s and More

Soon I will be embarking on my "lifestyle change"(trying not to call it a diet).  I was concerned that this new venture would be difficult, especially in the times that I am running 40 mi a week.  It is hard to balance full time work, exercise and scratch cooking 3x day/7 days of the week.  Although I am not confident in it all yet, I am learning more each day.

In fact I applied (these places are run out of shares) for a Community Supported Agriculture Farm (CSA) in which I pay $500 for 20 weeks of veggies, fruits, herbs and flowers.  I chose Lavender Lane BioDynamic Farm based on the fact that they choose to grow their stuff Biodynamically.

Here is a quick definition for those of you that do not know what that means (from growbetterveggies.com).

Biodynamic agriculture is a method of organic farming that treats farms as unified and individual organisms, with an emphasis toward balancing the holistic development and interrelationship of the soil, plants, and animals as a closed, self-nourishing system. Regarded by some proponents as the first modern ecological farming system, biodynamic farming includes organic agriculture's emphasis on manures and composts and exclusion of the use of artificial chemicals on soil and plants. Methods unique to the biodynamic approach include the use of fermented herbal and mineral preparations as compost additives and field sprays and the use of an astronomical calendar to determine times of planting and harvesting.

Anyway, it is good stuff and I am excited to support local farmers who support  the local environment.  After talking with farmer John (as he is known), this CSA also provides recipes for ideas on how to use stuff like kholrhabi and daikon (for the non-cooker like me).

I will be picking a date soon to start my lifestyle changes; I am looking at the end of January, but I need to write it down so that I stick to it (I am looking at it similar to my training plans).  Until then, I will be fatting myself up.

On another note, I did my longest hike yet since all of this "stuff" started - 7 mi.  Felt good, energy felt good, and it was pretty on the trails (snow, yay!).

Updates

Our computer has died; it has been a long slow drawn out death. For weeks it has made horrid sounds as it tried to keep going, but alas it's end has come. Basically that means that I am updating these blogs at work-shhh.

I have been doing really well lately; the runs are starting, albeit slowly (I am up to 2 mi-whohoo). A far cry from my marathon training a long two months ago. I ran Saturday with the plans to run Sunday but the rain and cold and just general fatigue kept me lazy yesterday. My plans are to get to the NYE 5K (it is tradition) and then to work up to the Fool's 25K trail run (I really liked this on last year). Depending on how that training goes, I might sign up for the Rev3 Half Ironman, but I want to play it by ear. Originally that was going to be my plan, but hey life changes and I am on for the ride.

I am getting excited about the holidays, not only do I have 9 days off in a row but I am getting to spend (and get) some real holiday love with the family. I think this holiday (and everyone after this) will be just that much more wonderful because I am not taking anything for granted now. I am hoping for a white Christmas (enter song here), so that I can do some of this (oh how I love snow).
Happy Holidays to everyone!

There were signs

My neurologist wanted me to write down anything that might have been a sign & symptom of MS.

Looking back there have been quite a few signs, it is funny that it all seems so apparent now, but I easily wrote them off when they occurred. I can see why MS is so hard to diagnosis, because all of these things could be something else and not obviously a chronic disease.

1) My first sign was IBS. Now this is something a lot of people get "diagnosed" with, but could be a sign of MS, food intolerance, other auto-immune diseases, etc. My doctor told me that 1 in 4 women are diagnosed with this (so do not worry, it isn't always a sign)
2) The year following my marriage (2004 - 2005) I was having these vertigo spells. If I moved my head at all I would feel dizzy and faint. I went to the doctors and she thought I was having these issues because my blood pressure was so low (60/90 at the time). So I was told to take in more salt and after around 7-8 months it went away.
3) Fast forward 3 years and I was training for my first AK marathon (this was 2008). I had done my 20 mi run on a really HOT day and afterwards my skin on my entire right side (from head to toe) went numb. I even posted something on my tri club forums to see if anyone else had this happen and people told me to go to the docs. I did, and all he said was that I had a pinched nerve in my shoulder and I received some PT exercises for my neck and back. After a couple of months I got all feeling back. My neuro gave me a vibration test (see below) and I passed with flying colors.


4) Then two months ago in Oct is when the migraine followed by optic neuritis occurred. Of course I was unable to ignore the fact that I lost vision in my left eye and I was forced to really confront what was happening to me.
5) Other signs

• Fatigue - I am always tired and never feel like I get enough rest, this has been happening for years and mainly responsible for the 4-5 cups of tea and coffee I drank a day.
  

• Heat Intolerance - I get zapped if there is any running in the sun or heat; in fact my husband makes fun of me because I am sweaty and red before we even begin to run

• Falling/Stumbling - I am always falling (running, hiking, walking). My trail-running partner last year was always commenting about how I am always falling. Of course I have considered myself clumsy since a little kid.

• Memory - this is my most annoying sign. For awhile now I have had trouble recalling words, memories, names, etc. I just thought it was typical, but now, not so much. Nothing like having beginning Alzheimer's at the age of 28.

• Tight Muscles - I have had chronic tight calf muscles. At first I chalked it up to running, but I have not been running much this past month and they hurt every morning.

• Shaking - I always joked that I could not be a surgeon, now I know why my hands shake so much. They just got worse after this last attack too.

So this is just the beginning of signs, it will be interesting to see what I "pick-up" along the way.

I ran

I was determined to run last night. I got home at 5:30, changed quickly, grabbed the dog and ran. I ran a whole mile and half. I was going to limit myself to 1 mi with a .5 mi warm up and cool down, but it was chilly and I only made it a 1/4 mi before I wanted to move my legs. I felt aerobically really good (I am glad I am not completely at square one).

It was a pretty awesome night, the clouds were spooky behind the almost full moon. It was brisk and I enjoyed that shock to the system. I felt good to be alive. I made it home and celebrated in my own way. I was pretty tired after it, but my body had been in an almost vegetative state for a month. I will try running again on Wed, I hope I feel good.

Giving Thanks

Thanksgiving holiday could not have fallen at a better time. I needed a four day holiday to rest and really give me time to wrap around everything that has happened in a month.

Thanksgiving Day was a little exhausting. We woke up at 4:00 am to take some friends to the airport and decided it would be easier to just stay up until the annual Homerun for the Homeless. This year neither P and I were able to run, but it is a family tradition, so we had to go at least cheer on our family. It was nice to see the rain subside and the sun come out for the day. Ran into Perseverance, who I had not seen in awhile and she took a nice picture of P and I. Note the fine Thanksgiving headpiece. It was good to get out and spend some time with family and friends.

At P's uncle's house for Thanksgiving I was able to talk with his cousin more about living with MS. He has had a pretty rough time of it all since his diagnosis 12 years ago at the age of 22, but he reminded me that everyone has a different situation. Either way it was nice to finally talk to someone who has dealt with this for awhile. I am happy that I have the health that I have now, and I will work to keep that for as long as I can.

The rest of the three day weekend was taking long walks, naps, and reading. It was a much needed weekend of taking care of myself. I managed a 5 mi walk on sand run yesterday and felt like I had much more energy. I will be trying to run this evening (just one mile with a .5 mi warm up and cool down) and see how it goes.

The biggest reading that I did this weekend was the MS Recovery Diet. After doing a lot of research it seemed that a lot of people have had success with figuring out food allergies/triggers and modifying their diet. I figure, if cannot hurt, and if it helps than even better.

As this book explains, there are five common food triggers that can set off the symptoms of MS-dairy, grains containing glutens, legumes, eggs, and yeast. Yet because MS is such a complex disease, other foods play a role, as culprits or aides. The key is figuring out what triggers symptoms in me and eliminating them from my diet. I am waiting until after the holidays to start this, but I am excited to be really focusing on my health. I am sure I will see other benefits for this diet, that will only enhance my health.

Newly Diagnosed

The appointment with the neurologist at the Cleveland Clinic went well, as well as a diagnosis of MS can go that is. The doctor I met with was Dr. Lael Stone and I liked her immediately. She, herself armed with no Physician Assistant or RN, came and greeted me in the lobby. She sat with me over 1.5 hours and answered all my resounding questions with such grace and comfort I would not have believed she was a doctor. I have NEVER and I mean NEVER had such a great feeling from a doctor. Talk about looking at a patient as whole; she even got me a tissue when I got a little teary eyed over all of my "fears" of this dx. I left knowing that everything I was feeling was normal, I am not an emotional rollercoaster, just another person taken a back from something.

There was a lot of good news. First, she thinks I have the less aggresive form of MS called Relapsing-Remitting. Which means I will have bouts of MS signs & symptoms with periods of nothing. The good news is that I can start to work out again. She wants me to continue the things that I love, just with a little more care and attention to my body. I am only allowed to start walking for this week, but she said I could start running (slowly) after a good week of brisk walks. My limitations are few as of now, but I must listen to my body, work on my diet, start taking more supplements, and managing stress.

Phew, a lot to think about. I have already cut out all alcohol, since I had not been feeling well I figured that was an easy one. I have been drinking a lot of water and I have been more careful with my diet choices. After the holidays I will look into pinpointing certain foods that could trigger MS exacerbations (as they call it). If you had asked me two months ago if I could think of giving up beer, cheese, and possibly bread, I would have called you crazy. It is amazing that when you really have to look at your health, these things seem like an easy change.

After my appointment, Dr. Stone handed me a plethra of reading materials. I also ordered 3 books from Amazon.com that arrived today. I am sure that these will keep me pondering about things for the upcoming months. I was never one to not research things to their fullest.

Anyway, the day ended with some of my favorite CTC Akron peeps for a good dinner at Crave. Thanks Kim and Erin for the much needed fun.

Running with MS

MI am trying to make sense of everything by researching MS and running/triathlons...etc. It is a little disheartening that the only information found on "Running & MS" was a story about a woman's husband who was running before the diagnosis and ended up having to give it up (great) or another story about a woman training for a marathon with MS (have no idea how that ended) or that the few blogs I have found about it are people relatively new to the disease and all of them (the three I found) cut off at some random point and do not continue (did it all become too much).

Is MS really that rough that I cannot run? What is the difference between today and the marathon I ran two months ago? I felt REALLY good at the AK Marathon this year, leaps and bounds from the year before. In fact this has been a heck of a year for running so far...

• January- Winter Buckeye Trail Half Marathon
• March- Shamrock 15K
• April - Fools 25K
• Numerous Trail runs and short runs through summer
• Sept - Buckeye Half and Ak Marathon
• Oct- Best recovery month ever (felt energetic and healthy, until I got sick)

OK, so right now I have not run in a month, but I can take/understand that I need to heal right now. I just don't want to say that things will never happen again.

Tomorrow I make my way up to the Cleveland Clinic, I am hoping for some, well...hope. I want to be positive and cheerful and focused...I want that to be reiterated from the doctors. I want them to tell me to go for a run tomorrow (I am feeling better & crossing my fingers for this one).

I cannot even explain how weird of a time I am having right now, trying to come to grips with all of this while still working full time, taking care of a household, and trying to just live day to day in some "normalcy". Sometimes I have to stop and remind myself that all of this has to do with me, I want to distance myself from the pity and love at times (I never was a attention whore). I also want to snap my fingers and go back to what I felt just a month a go...a long month a go.

Here's to hope!

BTW, I love that MS color is orange (one of my favorites).

6:15 am

This morning like every Sunday, Paul got up at 6:15 am to head to work (while I get to sleep in). I looked over at the clock with my "bad" eye and I COULD SEE. This is the first time since losing my eyesight that I could actually make out the clock. YAYAYYAYAYAYAYAYAY!!!

I am having a moment right now. :)

Patience

I have made it through a week, next Monday I find out about my MRI results. I have been through all types of emotions this week; everything from happy, anxiety, exhaustion, fear, and anger. I don't always think about the worst "what if", quite contrary, most of the time I am happy and laughing. I think it hits me most when I am reminded about the possibilities of a disease that could take away some of my most treasured things; running and backpacking. The feeling is overwhelming when I think, "I am 28 years of age and my "prime" of life might have already passed."

Anyway, more news will come in a few days. For anyone who is interested this is what I am seeing through my left eye. Like someone has smeared a thick coat of Vaseline on my glasses.

Music Therapy

Music is a savior...

Regina Spektor's new album Far makes me feel good. I believe that I will survive.

Today

Lack of sleep and trepidation has made this past week rough. Want/need to exercise because I know that is why I am unable to get as many hours of sleep. Grrr

Testing is Done...for the meantime

Although I was nervous, the MRI went well on Friday. I was lucky that they had CDs and headphones while going through the test. The test took a little over 50 min-25 minutes regular and 25 minutes injected with a dye. I am feeling a lot better this weekend, although my eyesight is still gone, most of the pain has left my eye. I will take the small wins right now.

I just have to be patient during the waiting game. 8 days until I know anything.

MRIs and Lost Vision

Have not written here for a long time, but I have been needing to journal. Things are topsy turvy in my life right now and I am very fearful of what is going to come. I feel that anything could happen.

To give the basics about two weeks ago I began feeling like I was getting a headache, over a few days the headache became unbearable. I was dizzy, nauseous, and my head felt like someone was beating me with a hammer. After about 4 days of continuous pain I went to my Dr.

He right away thought it was a migraine (which I had once after my wisdom teeth were pulled and it felt different) and I thought maybe he was right. I agreed on trying the medicine that he gave me and over the course of two days the headache went away. I still had this sever pressure behind my eye, but I was hoping that it would go away in a day or two.

In two days time I began to lose eyesight in my left eye. After googling a lot of "possible" diseases, I thought it would be better for me to visit an ophthalmologist and get an actual Dr.'s opinion. After a long appointment, my doc stated she thought that the cause was my optic nerve, something called Optic Neuritis. She also knew that I was going to google it, so she stated that I would find out that it could be a sign of Multiple Sclerosis.

I thanked her for the information but in my mind I was like, "WTF!!!!! Are f-ing serious?"

Of course I knew what it was, I have a best friend whose mom has been dealing with it, P's cousin has had it since he was 15, and I studied physiology in my undergrad, the implications of this were overwhelming to me.


My ophthalmologist wanted me to get a second opinion from another ophthalmologist who specializes in the optic nerve. This past Monday was that appointment, after the exact same tests at the last Dr (you think that they could share information) it was reconfirmed that I indeed did have Optic Neuritis and that I had lost a significant portion of my eyesight.

He also gave me the Multiple Sclerosis spiel (stating that 50% of Optic Neuritis sufferers have MS) and asked me to get an MRI. I am due for a full MRI of my brain and spinal chord tomorrow.

What am I feeling right now? Well, afraid, mad, unsure, scared, emotional, tired, and just sad. I am not allowed to work out, because a rise in body temperature can aggravate the optic nerve. Usually if I am having a bad day, week, month I turn to running. Not only am I feeling all of these things but my favorite stress reliever has been taken away.

It will be over a week before I find out the results, I am hoping for the best, expecting the worst, and trying to be strong in the ensuing weeks. Life is funny at handing things to you when you least expect it...scary.