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.