Happy Holidays

Since the computer at home is done and I am off of work for the next 9 days, I wanted to wish everyone a great holiday.

Have a very blessed 

MERRY CHRISTMAS 

and a 

HAPPY NEW YEAR!

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!).

Holiday Eating Tips

Since I am going gluten, dairy and legume free starting at the end of January, I have decided to make up for it this month  To be funny here are some "Christmas Eating Tips" that I am currently living by.

1. Avoid carrot sticks. Anyone who puts carrots on a holiday buffet table knows nothing of the Christmas spirit. In fact, if you see carrots, leave immediately. Go next door, where they're serving rum balls.
2. Drink as much eggnog as you can. And quickly. Like fine single-malt scotch, it's rare. In fact, it's even rarer than single-malt scotch. You can't find it any other time of year but now. So drink up! Who cares that has 10,000 calories in every sip? It's not as if you're going to turn into an eggnog-alholic or something. It's a treat. Enjoy it. Have one for me. Have two. It's later than you think. It's Christmas!
3. If something comes with gravy, use it. That's the whole point of gravy. Gravy does not stand alone. Pour it on. Make a volcano out of your mashed potatoes. Fill it with gravy. Eat the volcano. Repeat.
4. As for mashed potatoes, always ask if they're made with skim milk or whole milk. If it's skim, pass. Why bother? It's like buying a sports car with an automatic transmission.
5. Do not have a snack before going to a party in an effort to control your eating. The whole point of going to a Christmas party is to eat other people's food for free. Lots of it. Hello?
6. Under no circumstances should you exercise between now and New Year's. You can do that in January when you have nothing else to do. This is the time for long naps, which you'll need after circling the buffet table while carrying a 10-pound plate of food and that vat of eggnog.
7. If you come across something really good at a buffet table, like frosted Christmas cookies in the shape and size of Santa, position yourself near them and don't budge. Have as many as you can before becoming the center of attention. They're like a beautiful pair of shoes. If you leave them behind, you're never going to see them again.
8. Same for pies. Apple. Pumpkin. Mincemeat. Have a slice of each. Or, if you don't like mincemeat, have two apples and one pumpkin. Always have three. When else do you get to have more than one dessert? Labor Day?
9. Did someone mention fruitcake? Granted, it's loaded with the mandatory celebratory calories, but avoid it at all cost. I mean, have some standards.
10. One final tip: If you don't feel terrible when you leave the party or get up from the table, you haven't been paying attention.

And the times they are a changin'

Updated the look of my blog today, it was about time.  Had fun making the header and am thinking I could change that more often now that I know how.

The picture of me is from our August two week hiking trip to New Hampshire this year.  I am hiking down the Tuckerman's Ravine trail off of Mt. Washington. 

For me mountains are a metaphor for my life. 

1. An ascent that at first looks smooth turns out to have unseen dips and ridges and valleys.
2. The higher you climb, the thicker the weeds, the harder it is to breathe.
3. You need a clear vision of where you're going if you want to avoid getting disoriented by the clouds that roll in and block your view.
4. You have to be determined to make it to the top. Otherwise every slip, stumble, and fall will give you an excuse to turn around and head home.

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. :)

and...

Well the news was not what I hoped for. The MRI showed over 3 lesions on the brain which means probable MS. There is still a glimmer of hope, I still have to have another "episode" before they will diagnosis it completely. At this point I have an 80% chance of being completely diagnosed.

This was third and final day of extra strength IV steroids which have made my stomach a little rough, I was having trouble holding anything down the past few days. The reason that I am given steroids is to help keep MS from showing itself for the next few years. So although they are making me feel like crap, I figure that they will be a lifesaver for a little while. The next step will be oral steroids for 10 days and a trip to a neurologist at the Cleveland Clinic (which I am sure will require some more testing).

I am holding up fairly well despite everything. Not sure if it has sunk in completely yet, but at the same time, I am a deeply hopeful and positive person 85% of the time. For me it is just another challenge in life for me to overcome. Not to say I have not had my moments, I am tired of feeling like crap and I am fearful of the things that may be taken away, but I am also resigned to knowing that I cannot change this. I have nothing to do but to be hopeful and positive.

One last thing, I want to thank everyone for their kind thoughts and support. I have been inundated with so much love that it has been overwhelming. I am so lucky to have so many people who care.

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.