MS - Finding Daylight (Part 3)

Germany had always been a refuge for me. My mother had been born and raised there, and my Grandmother and aunts were still alive, my cousins were great friends. So my flight from England to Germany seemed as natural as my prior trips from Boston to Germany in earlier years.

I landed in Frankfurt and hopped on a train to Fulda to see my Grandmother - my Oma. It was so wonderful to see her! She made schnitzel in honor of my arrival, and already had a list of Homeopathic Specialists she wanted me to see for evaluation. It was such a welcome relief to have family helping me find (what I hoped) were alternate theories to this terrible prognosis. You could say, I was in my initial stages of denial.

My visits with each specialist went forward successfully. They looked into my eye, confirming what the doctors at home had told me (inflammation of the Optic Nerve); but, they also gave me specific liquid vitamins to take with names I never heard before. They also told me to reduce my intake of bread, cheese, milk and sugar.  Being in Germany, that was not an easy feat - the bread pastry, cheese and beer were gastric treats I craved. So, once again, I denied this reality, justifying my behavior by continuing to take medication and keeping the patch on my eye.

I stayed in Germany for 10 days, visiting relatives and friends, laughing and talking, and was able to regain the German accent I had in college. I also took a chance. I lifted the patch on my eye during the day to see if my vision had cleared up. To my complete surprise, certain areas in my vision were clearing up! I could see less of the milky wash that clouded my vision initially, and more of the life around me. My world was opening up again!!

Back to reality...

MS - The beginning I didn't believe (Part 2)

So, I ran away.

With a confirming note from the doctor in hand, I went in to my office, and let them know about my blindness in one eye, and that I needed to take a month of rest. Support for my condition came from all sides.

I gathered my things, and happily left the building.

I went back to my apartment and cried and walked and cried. After a day of feeling sorry for myself, and using way too many Kleenex, I shook the tears from my face and took action. For three days I exercised like a caged mouse on an exercise wheel. I went to the park and lay in the sun. I ate fruit and veggies. I danced in my Living Room. Alone. I called friends and family. I listened to Yes. I thought somehow, these random acts would change reality. But, they didn't.

So, I called my English beau, booked a flight to England, and shook in my sandles while waiting for the next shoe to drop.

After one week of waiting, the day finally arrived!

I stepped onto the plane and flew to England - a country I had only seen from the air in prior years. I landed in Gatwick, and was greated by my English love. I enjoyed a wonderful warm, relaxing and sunny vacation. I walked through the gentle countryside, visited museums in Bath, Bristol and London. Ate English lunches of cheese, onions and beer, and sweetened my perspective with late afternoon treats of strawberry scones and whipped cream, washed down with a pot of tea. We walked among the stones at Stonehenge (before security was an issue), rode in double-decker buses, and rode on motorcycles down the East coast of England. It was wonderful! All the while, I kept the patch on my eye. No peeking, except for the evenings when all was dark.

I then called my Grandmother in Germany to let her know the state of my health. She asked me to come to Germany and have some of her Homeopathic doctors take a look at my condition. I wished I could have extended my stay in England, but work-day reality intervened, the time was right, and my condition was stable. So I bid my beau goodbye and hopped on a plane to Germany.

I ran away again.

MS - The beginning I didn't believe (Part 1)

I was 26-years-old and having major conflicts with my boss that were followed by headaches that seared through my brain as a result. This went on for a few days. It was late Spring. my English boyfriend had stopped by for a weekend visit with his friends before they headed back to England, and I was happy (except for the conflict at work), and sad that my boyfriend was returning to England.

A few weeks later, the conflict with my boss started up again. He threatened me with the loss of my job if I didn't comply with his demands, and I was scared. I needed my job. I needed the income. My boyfriend sent a mail with an open invitation to visit him in England.

The headaches started again.  I didn't know what to do other than stress out, worry, and wait for 'the next shoe to drop'. I wanted to fly to England.

I went to bed one night shortly after the threat discussion, accompanied by a repeat of my migraine headache. I slept deeply after taking aspirin, and awoke headache-free in the morning. I got up overjoyed that my headache had stopped, and looked in the closet for clothes for the day. I rubbed my eyes and thought I still had 'sleep-eyes' - my vision was slightly blurred in my left eye. So I got into the shower believing I would wash out whatever film was in my eye. The blurring didn't go away.

Of course, at that point I became my own physician and determined that I had had a very bad sinus cold which affected my vision. (Amazing what bad roads self-diagnosis can lead you on...) So, I went into work and called my physician to let him know my own health prognosis.

He asked me to come in for an exam that afternoon. I wanted to fly to England.

I was somewhat annoyed that I would have to wait, but went anyway. I wanted to get rid of this stupid 'eye issue'. I was called in with no big wait (which made me happy as I had plans later that night to go shopping). After a rather lengthy eye exam by a partner doctor, another doctor, and my own doctor, the release statement to me was: 'You have no sinus infection. You have a condition known as 'Optic Neuritis'. You need to get an additional test (Cat Scan) for confirmation, but we're putting you an Steroids for the next two weeks to reduce the swelling of your Optic Nerve. This condition typically happens to women that fall into your age range.'

WHAT???

'This could also be a sign that you may develop MS sometime in the future.'

The walls came crashing down. I wanted to run away.

Ahoy Mates!

We decided to do our annual trip (me, Tony and Anneke) to Provincetown on the Boston Harbor Cruise ferry two weeks ago Saturday. Little did we know that one of the ships that left at the same time would end up smacking into a very small island (200 sq ft) - no one hurt. Fortunately, all went smoothly for us. Only an hour delay, and the day was fabulous!

We brought my 'transport chair' to give me some speed and keep all of us moving around town with no delays. Stopped first for a great lunch at Pepe's on the harbor - great harbor view! Anneke and Tony went down to walk the beach before lunch, while I chatted with a couple from Atlanta who had a beautiful golden retriever with them.

After a delicious lunch, we proceeded to walk (and ride) up and down the main road, stopping at all the great shops along the way. What is great about the chair is that it takes the stress out of 'getting around'. Once I reach a place I want to investigate, I step out of the chair and pull my fold-up cane out of my knapsack to keep me steady, and I'm off! Kind of like the magic of Mary Poppins in a sack;-)

Later that day, we had a great cruise back to Boston, and took time to stop at the RoseKennedy Greenway outside of the harbor area to see the open fountains and watch the kids jumping around the spouts to avoid getting wet:-)

Anneke joined the group and got surprised by one water spout. I considered going through with the chair, but didn't know if the gears would get rusty, so I stayed on dry ground.

It was a funny, crazy day!

Enjoy the unexpected!

Andrea

A miracle drug?

I am now taking a new medication - Ampyra. This is supposed to help improve my walking gait and speed. I see glimmers of success, but I'm still clumsy with my stride. It is frustrating to know that 10 years ago, I would walk for 5 miles without tripping over myself. Yet today, I consider myself lucky to make it through the parking lot without using my cane. I have dreams where I still run and jump and walk, but I wake up and realize that it's another day of making sure my balance is set correctly, and that I take my time walking through doorways and crowds so I don't lose my step and fall.

Yes, there are days when I feel bad for me. Then, I realize that I'm still able to walk with a cane, and sometimes without. I should consider myself lucky, right? (Long pause) No, I consider this illness a bitch, and I'm proud of myself for working with it's limitations. Lucky? Hell no.

Let the stem cell research help mend those of us remembering when walking was a natural action.

Stay strong!

Andrea

Stepping into Possibilities

I read through my last post and was not happy about how I sounded, so I'm adding my own counterpoint.

There are so many things I do now that are more fulfilling to me than I previously experienced in my life:

• Biking on my stationary bike.
• Exercising.
• Writing this blog and doing research for my other blogs.
• Creating delicious meals.
• Laughing with friends and family.
• Loving my husband.
• Walking my dog.
• Refining our lives.
• Believing in magic and believing in my future.

I love life! I thank God every day for what He has given me, and for what He has taken away. If not for this Yin and Yang, I would not be the person in the mirror. I have more empathy, more understanding, less criticism, and more balance in my soul. As far as magic goes, I'm now taking a new medication which may help with my walking stride - Ampyra. It's helping to try and allow my nerve signals to complete their transmission through my legs and give me a better experience with 'a daily stroll'.

I'll be wishing on a star tonight;-)

But, you look great!

This has been a common statement I've heard from several people when I reveal my MS condition. What most people don't realize is that it's not an illness that presents itself clearly. What you can't see is what ails me:

• Difficulty with balance
• Loss of muscle strength in legs and arms
• Flue-like conditions after each shot 3 times a week
• Exhaustion 
• Cramping and tingling in legs and feet
• Inability to walk beyond a city block

Emotionally, it's the frustration of not being able to do the activities I used to love: riding bikes, golfing, taking long walks, running, skiing, exploring shops and sightseeing.

I've learned to adapt. I've learned to pace. I've learned to swallow the pain and fear associated with moments and tomorrow. But, in the end, I live with this new partner in my life, while still working to live fully in each day. Grace becomes a more pleasant companion, along with acceptance and hope for the future. After all, 'Tomorrow is another day...'