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...'

MS and the stars

Last week the reports came in about Jack Osbourne and his MS diagnosis. I felt the emotional pain he must have gone through, remembering my own experience at 26 when I suffered from Optic Neuritus, lost my vision temporarily in both eyes, and was told I may develop MS one day. This was a time before MRIs, when the only 'official' diagnosis was via a spinal tap which I refused because I was afraid of the results (a cop-out, but my choice at that time).

Despite my denial, I was fortunate, as I hope Jack Osbourne will be. I was afraid and alone. So, I started a routine vitamin therapy on my own which - I believe - held additional exacerbations at bay for 14 years. I did not believe I would ever reach a stage of 'disability', but went on with my life and activities as if nothing ever happened: I road my bike in charity drives, I walked daily for exercise and for the love of walking, I travelled with friends and visited relatives overseas, got married-divorced-remarried, I skied, I danced, I did my gardening and yard work, renovated 2 homes, etc. etc. etc. Overall, I had a great life!

But gradually, the additional stresses of my job and the stresses of home life and my own belief that I could go without the MS medication for one year, finally led me to another exacerbation. This put me into the next reality of my experience with this disease - I experienced problems walking, and felt the wave of extreme exhaustion come over me at various times during the day. I couldn't operate 24/7 the way I used to, and multi-tasking began to wear me down. It was time to face the reality of my body's state and treat myself with care. I hope Jack Osbourne does the same so that he can enjoy many years of health and happiness with his new family.

I now walk with a cane at 54, and have a transport chair (my magical carpet ride) for longer stretches which my wonderful husband happily stears for me, I take my medication faithfully and restarted my vitamin and exercise/stretching regimen, I meet friends for dinner, walk my dog, make attempts to ride my bicycle, and have now transitioned to a gluten-free diet. Life is not the same as it was, but it's still a blessing to be alive and mobile!

My condition has taught me so many things about myself, my friends and family, work colleagues and my relationship with God. It is a crazy life, but the joy surrounding each of us every day is priceless. I always think of a little prayer when I'm feeling low which helps me to remember the reason why I'm here, "Thank you, Lord for all the things you have given me, all the things you have taken away, and joy to embrace another day."

Always find a rainbow in your heart!

Time Flies when...

It's a blustery afternoon. The wind is blowing around the corners of the front porch trying to catch the pages of the novel I'm reading to force me to the next page. The dog has found a sliver of sunlight to call her own and has planted her belly in a far corner of the porch which is free from these bursty gusts of luke-warm air.

I feel wonderful! Went to see my chiropractor this morning, who worked his magic and balanced me again. I knew something was not right due to my measured gait and aching lower back. His adjustments are like Heaven to me, removing the stress and tension. And maybe, for a little while, I can forget about this damn disease and imagine that I'm 41 and able to move through the day with no restrictions or balance issues. My Grandmother always said, "If you have your health, you have everything." She was right. But, for now, I'm thankful for these moments of reverie, lazing on my porch in an afternoon where the wind is pushing me to finish the last line of a chapter.

It's all good!

Sightseeing in my transport chair

(an older post that was never posted..)

I decided that since long walks were no longer an option for me, I would rent a transport chair so that my husband could move me around when needed to avoid my constant rest stops; yet, still allow me to get up and walk when we reached interesting sights to investigate, like shops where I could meander through the goods for sale and drop a dime or two;-)

Last weekend it also provided us with another use - go to a baseball game at Fenway in the rain! My husband rolled me into the park, and since it was raining - with a rain delay on the game - he took the opportunity to wheel me around the food and beer area so I could see all the changes that have been built into the stadium over the years. So much of the building has become handicap-friendly: no more stairs everywhere with no ramps. It was such a nice night even though the Red Sox lost to the Braves:-(

Before, I had to quickly find a place to sit. Now, I'm sitting on my own personal magic carpet:-)

Always keep your mind open for options! I've purchased this chair for my future adventures;-)

Andrea

Summer Blues

It was a bad night last night. Just when I thought all of my weakness issues were under control, I was hit from left field: tried to get up from bed during the night and had no power over the lower half of my body to move. I had to wake my husband to help me. This happened to me once before, so I may be fighting a cold in my system, or the stress I felt this week put me over the edge. I'm ok this morning; just a little weak and tired. Fueling up on vitamins and staying out of the heat today to avoid any further issues. MS is a mystery. And, it's frustrating to go through these unforeseen moments that test your resolve and dash your sense of progress. I just have to keep on moving...

Never give up!

Discipline

The progress that I want to make in my life, and the reality of these ongoing physical challenges, put me at odds. Yesterday was one of those 'bad' days: my legs were wobbly, my strength was at a low, and my exhaustion added to my 'delight' making me one sad couch potato:-(

So, I woke today with a new attitude, and a promise to my husband that I would pick up my exercises again, get back to writing, and build my world back up one step at a time.

Day One - off and wobbling;-)

Thought for the day: Nothing is beyond the reach of determination!

Andrea

MS - One Year Later

We've had an unusually mild winter, and yesterday was another 'warm day surprise' at the Boston Marathon - temps reached into the 90's! I stayed indoors and worked to avoid any possible impacts to my strength, so was happy to see a new day of cooler temps.

I'm trying to find a new direction in life - with my health and with my professional interests and strengths. Blogging is good for me as it taps into my writing strengths, does not require tight deadlines, and allows me to communicate about the positive and negative strides I experience while living with MS. So, I'm working to make this a regular update moving forward. Wish me luck;-)

Have a great day!

Andrea