Thursday, June 19, 2008

Carnival of MS Bloggers #13

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

“If a person who indulges in gluttony is a glutton, and a person who commits a felony is a felon, then God is an iron.”- Spider Robinson

by Shauna
Many many years ago, a friend (George) at university introduced me to the writings of Spider Robinson. The man is very funny and insightful and punny. Makes for a very good combination. So I enjoyed everything he wrote. Then I read Mindkiller. The second chapter of Mindkiller had actually been included in an anthology of short stories. The story was called God is an Iron.
When I first saw this title I thought "iron:anvil". Then I thought "iron:something to remove wrinkles". But God is an anvil or God removes wrinkles didn't make a lot of sense to me. So I decided to read the story to find out what it meant. And boy, was Spider right. God is THE master of irony.
All this is to simply set up how I found out I had MS.
In January, 1998, my (ex)husband and I went on vacation to Quebec City. During the height of the big ice storm, no less. I wanted to go to St. Ann de Beaupre to send my grandmother a postcard from there. If you are Catholic you probably know about the place. It is a shrine to Saint Anne, the mother of Mary, grandmother of Jesus. People have been going there on pilgrimages for ages to seek relief from physical ailments and afflictions. My grandmother had been there in 1939 (she had polio as a child that left her lame). I knew she'd appreciate that we had made a stop there.
The church that is there is really a gorgeous piece of work. We went into the church and were the only ones. We walked around, admiring the structure, the tiles, and amazed at the number of crutches, canes, and orthotics that were tacked to the front pillars, left behind by people who had been "miraculously" cured.
The next day, as I was brushing my hair, my right arm felt kind of weak. And I was tripping over my right foot.; I was having trouble holding my toothbrush and even writing. We returned to Halifax and I went back to work, but went to see my family doc about the increasing weakness. She told me to come back if it got any worse and she would try to get me in to see someone. Two days later I was back in her office and she was on the phone to a colleague who saw me at the hospital that afternoon. At 5:45 that evening the neurologist was telling me I had MS. A couple of hours later, I was telling my parents that it was a little ironic that my symptoms began the day after I had visited St. Anne de Beaupre. And that's when it hit me.: God really IS an iron.
My grandmother received the postcard and just loved it. But the entire family was sworn to keep from her my diagnosis. She passed away a year and a half later and I like to think she passed into heaven dancing a Sottish jig and then, upon discovering I had MS, giving God a piece of her mind about that. My grandmother had a wonderful sense of humour, but I doubt she would have appreciated the irony.
"I went to St. Anne de Beaupre and got afflicted." - Shauna
Sometimes the MS journey is smooth, other times bumpy. Sometimes it is scary. Sometimes it is frustrating. Sometimes it is humbling. Many times observations of how an individual handles the bumps along the way, mentally and physically, can become inspirations for others. What follows comes from one such moment.

While having a moment...., Linda of BRAIN CHEESE penned the following poem. I thank her for giving me permission to shed a few tears of my own.
Barbie & The Milk Proverb
Let me cry
Over my spilled milk.
It is not the milk
I grieve,
But loss of
The simple act of
Pouring
Liquid into cup.

How I take for granted
What used to be
Mindless tasks
Of rote memory.

My flesh no longer
Feeling the smoothness
Of the cup
Beneath fingers
Weakened by disease.

These foreign appendages,
Stiffly positioned
Like arms
Hanging from a
Plastic doll,
Serving no purpose.

Barbie has no brain
To bring these
Hands
Back to life.
At BARBARA'S TCHATZKAHS, one can find important topics and articles highlighted by Barbara who often adds a personal touch. Here is one of those posts in which she asks the question - "Why Doesn't My Doctor Know This?" and finds a possible answer an article by Dr. Holtorf which she republishes on her blog. Go there to read the answers.
I found this out 12 years ago when trying to get a diagnosis other than "its all in your head" for the reason I was: paralyzed at the time on the left side, unable to eat, in excruciating pain that defied words, unable to walk more than 2 feet without falling over, and running a fever that would not go away.
When a doctor who knew what she was talking about looked at the already done CAT scan and blood work? My diagnosis jumped out at her. She was appalled that it was missed but not surprised.
Other doctors? Dismissed it as nothing simply because they didn't understand it or were uninformed.Because they were uninformed? stupid? unwilling to deal with a chronically ill patient? pressured by the insurance companies to get rid of chronically ill patients? or all of the prior?
by Diane J Standiford


The following suggestions are from a person (me - Diane) diagnosed with MS in 1990. They got me through the first days and continue to help me thrive while under the influence of this chronic, progressive disease with no cure. The rare cases of MS will be benign or rapidly progress downward; but the chances of YOU having either of those cases is as likely as winning the lottery. The following suggestions are for all the rest of us. Together we will make it through and just maybe find beauty where we never dreamed it might be.
  • Do not PANIC. Life is full of bumps. This will just be another one and you will land safely on the other side.
  • Rejoice. You do not have a brain tumor. MS will not kill you.
  • Grab some MS brochures on your way out of the neurologist’s office.
  • Call your friends, and loved ones and explain what you found out. They will follow your lead from here on out.
  • Start learning about multiple sclerosis. Learn to spell it. If you have a computer, begin looking for MS information sites like the National MS Association and your local MS Society. Search MS Blogs for personal stories from people just like you.
  • Reach out to people for help dealing with this new part of your life. There are social workers, occupational and physical therapists, naturopaths, all waiting for your call.
  • Talk to you. What is your biggest concern? Make a list. Prioritize and begin to take action. There is no concern that others with MS haven’t had, and know that all can be handled without the world stopping from spinning.
  • Write in large print on a large poster board: “I will be flexible.” (This will be necessary both physically and mentally) and “I can be certain that nothing is certain.” That is especially important for type-A personality types. You can still feel certain (of uncertainty) and you can stay in control. (Of your knowledge that you no longer have control of your body.)
  • Prepare. Prepare yourself by accepting all your new physical, emotional, and mental changes---women, recall when you got your first period; men, recall when your facial hair first needed shaving---you got used to the new you. You accepted the changes because they were not going way anytime soon. Prepare your family, friends, and co-workers; educate them. I know this is controversial; but sooner or later you will need their help. This leads to…
  • Become an opportunity for others to become more loving and giving.
Thank you Diane for such great advice. And while navigating the bumps, I hope that you are also out there living life. On a recent Saturday I enjoyed living despite my fulltime companion, Multiple Sclerosis.

To combat fatigue, I used my handicapped placard and took a long nap between events. My Sweetie and I arrived at the second event of the day more than an hour after it had begun, but that was fine. Sure I got so fatigued in the evening that I could hardly stand steadily, but that was not a problem (although I was winning that 2nd game of pool after having won the first one too - darn MS). We left the party early, but so did those who followed right behind us.


- A Day in the Life of Lisa Emrich


The “Stars and Stripes”, the official National symbol of the United States of America was authorized by congress on that Saturday of June 14, 1777 in the fifth item of the days agenda. The entry in the journal of the Continental Congress 1774-1789 Vol. Vlll 1777 reads “Resolved that the flag of the thirteen United States be Thirteen stripes alternate red and white: that the union be thirteen stars, white in a blue field, representing a new constellation.”

This morning I attended the graduation ceremonies for one of my high school horn students. She had received an award and each year the recipient of that award is invited to perform at graduation. So a brave hornplayer, Leslie, followed the valedictorian's speech and the commencement speaker by performing Eugene Bozza's Chant Lointain for Horn and Piano. I played the piano part. She rocked!!
One interesting thing that I noted occurred near the beginning of the proceedings as the choir sang the National Anthem. All heads were directed at the humongous flag hung on the gymnasium wall, but maybe only a third of the attendees had hand over heart. Not even all of the faculty members made this small gesture. Perhaps observing whether someone places his right hand across his chest has become less a symbol of patriotism and more one of cultural indoctrination. I think that it has less to do with respect than it does outward signs of conformity.
A second interesting tidbit came during the invocation. First an official school invocation was read; it was also printed in the program. Then three students read verses from three texts. One young man chose a verse from Joshua in the Old Testament of the Bible. The verse chosen by a second young man was recited in the original Sanskrit before he provided the translation. Then a young woman recited a Hebrew verse and it's translation. An inclusive collection of faiths and beliefs represented.


Then the kicker. As the Head Master, this is a private school, was sharing bits about the graduating class he mentioned all of the college applications, all of the acceptances, all of the honors and scholarships. But the one he saved for last was the announcement of a senior who had been presented her commission to attend the United States Military Academy at West Point.

That honorable graduate is none other than my horn student, Leslie. Way to go girl!!
In the afternoon, my Sweetie and I attended a graduation party for the son of one of his co-workers. What a party that was! Wonderful bounty of Ethiopian cuisine, including a traditional honey 'beer' made fresh by the host. Did I mention food? Lots and lots of food.
Later in the evening - I believe many guests were staying the night - we shot some pool and enjoyed music of which neither of us understood a word. The father of the graduate played some music videos in the background which showed copious examples of traditional Ethiopian-style dance. Well, can you see where this is leading?
A drink (coke) was taken out of my hand while I sat in a cozy armchair and I was recruited to join the dancing. OK. I don't dance. Never have really. But many, many, many eyes were on us in that grand basement. So I did my best at replicating the shoulder-shrug/shake and arms bowed just so of a native Ethiopian woman. Out came the video cameras I'm embarrassed to say and much laughter bounced around the room. I even grabbed my Sweetie to share in the embarrassment. I'm afraid their friends and family will be talking about the party during which the only non-Africans joined the dance.
Now tell me honestly. Does it matter that in one day I celebrated American patriotism, Christian scripture, original Hindi Sanskrit, Hebrew Torah, and the fellowship of a mix of Muslims and Christians? Such is life near the Nation's Capital.
T
oto. We are definitely not in Kansas, I mean Oklahoma, any more.
This concludes the 13th edition of the Carnival.
The next Carnival of MS Bloggers will be hosted here on July 3, 2008. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, July 1, 2008.

Thank you.
Comments for this post.

Thursday, June 5, 2008

Carnival of MS Bloggers #12

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.


"I have embraced my joy and rejected my fear so, while I am truly present, I accept whatever the future may hold. " - Nadja Tizer

Strength in the face of the unknown - that's something to which I aspire daily. With or without multiple sclerosis, each of us do not know exactly what tomorrow or next year may bring. That is a common truth of living. But sometimes what is perceived as strength may stem from compassion, other times it may be a method of self-affirmation.

"I maintain a positive attitude because I want that reflected back on me."
- Shauna in Keep Smiling.
On the side of this blog is a quote I was kindly allowed to put up by the author:
Anyone who has ever gone through a serious illness has probably been told that they are “so strong,” when in fact, that strength has been mistaken for a patient’s need to not inflict any more emotional pain on those surrounding them.
The reason this particular quote resonated with me is because on the day of my diagnosis and admission to hospital for treatment my main worry (actually, my only worry) was "how are my parents going to deal with this". My mom, I suspect like most moms, is something of a worry-wart. It was bad enough going off to college at 17 in Nova Scotia when my parents were living in South Korea. I knew they were worrying about me. I came down with mono during the second semester but didn't tell them until I was in recovery mode, because if they knew how sick I had been, they'd have been on the first plane, train, or automobile that would get them to me. Two days of travel to watch me throw up? I don't think so.

I honestly wasn't concerned about what MS was going to do to me. I already had known a couple of people with MS and they seemed to be OK. One gal had terrible tremors but she led a very normal life, married with kids. The other guy was somewhat disabled and had a scooter and had taken early retirement but he seemed to be coping well enough. And I literally figured that if I lost the use of the right side of my body permanently, then so be it, I'll get really good at typing with my left hand and start wearing velcro sneakers.

I was concerned about my parents. Firstly, I thought, Mom will blame herself. You know, "I should have eaten better when I was pregnant with you", "We should have insisted they remove your tonsils at 4 instead of waiting til you were 10, then you wouldn't have had all those infections growing up", "I shouldn't have let you eat that bug when you were 2". Then I thought, they're going to be calculating what my expenses are going to be as a disabled person and try to put together some sort of trust fund when they should spend their money on themselves in retirement. (They were just approaching retirement at the time). And then I thought they'll never sleep soundly again.

Mom and Dad were a little freaked out, as any parent would be. But after I called them, they showed up in the hospital to see me an hour later, and seemed put together. Of course, I was joking with the staff and eavesdropping on other patients' conversations in the ER and wondering how long I'd be in the hospital. The Parental Units put on a very brave face. When the admitting nurse came to fill out some forms she asked me how long I'd had MS. I looked at my watch and said, "About an hour and a half". She laughed, my folks didn't. "You were just diagnosed then", she said, and added, "I've had it for 5 years". I just looked at Mom and smiled. [...]


I spoke with a neighbour recently, a very nice, semi-retired widower. He told me about his wife's battle with cancer and how she carried on as normal as long as possible. She maintained a strength and positive attitude until the very end that he marvelled at. "She had cancer! She was dying! She was suffering! It was hard on me, but it was much worse for her", he told me. "How could she have been smiling when things were going to end for her?" I told him that it may not have been as hard on her physically as he thought. "What's harder perhaps is worrying about how your loved ones will react to the news or the event of a death. She was probably concerned that you'd have a hard time dealing with her passing, so to help ease your mind, she put on a happy face". And I told him that I maintain a positive attitude because I want that reflected back on me.

If I lead by example, others will follow. I hope.

Curb Your Reaction and the Face of MS

Newly-diagnosed just a mere three weeks ago, Nina shares her concern over the Reactions she has received when revealing her diagnosis.
I clearly have no problem with people knowing I have MS. I mean, I can put a face on MS that might be different than what you might expect so it’s surprising to everyone I tell. The reactions of others have been interesting to say the least. The reaction to it is really the only reason I considered keeping this private. If I hear another story about how (insert family member) that died of MS, I might explode. The life expectancy for someone with MS is 95% of the time the same as someone without MS.

I think everyone knows one person that has MS and they can’t do normal daily activities. The problem is that there is another three with MS out there doing normal everyday things with no visible disabilities. Those folks are the “normal” face of MS. They aren’t as open because well, they are out living their lives and don’t have time to deal with other peoples emotional baggage. There is no reason to tell me I will be fine or that it’s going to be ok if I am crying. Don’t argue with me that people live normal lives with MS. Don’t invalidation my sadness. I am allowed to be sad. Not only am I allowed but its normally, accepted and ok. Perfectly ok.

With that said, I am a logical soul and realize that I will be fine. I have a wonderful support system and I am still the normal girl that I was before. So your question might be, how SHOULD one reaction to this kind of news from a friend or loved one? Well, I have a few suggestions:


  • Keep your personal NEGATIVE experiences about MS to yourself. It’s not helpful, really.
  • Research what MS is. I had a coworker later tell me they were reading about MS and I was so comforted by this for some reason. Sort of like he understood what I am or will be going through.
  • Allow them to have emotions and sadness. Keep your comments about how it’ll be ok or it’s not that bad to yourself. You are just uncomfortable with sadness and really, sadness is ok.
  • And finally, one of the best things that has happened to me is the ability to connect positive people living their lives with MS.
"If not me, then who?"

Exactly!! Thank you Nadja for asking this very important question. Nadja was diagnosed less than three months ago and is already providing an excellent example of how one can concentrate on Living! with MS.
I want people to know that MS has really changed me and at times I want to talk about that transformation.
Some people might ask why I would want to be the poster child for MS, why I would put my life out on display so honestly and openly... I would respond, "If not me, then who?" Someone has to speak. We spend life seeking connections and understanding, how can we understand the range of human experience if no one ever speaks? How can we learn to love and respect our fellow man if we can't even be honest about the deepest, darkest recesses of our being? I remember that my mother told me that I don't have to change the world just because I have MS. I counter again, "If not me then who?" We can't sit on our butts and wait for someone to come along and save the world. We have to take responsibility and do it ourselves.
My mentor also cautioned me about putting my life out on display. To that I said, "I don't give a F--- what anyone thinks." She was very taken aback. I didn't mean it in a harsh way. I just meant that MS has taught me to scoff at fear. I used to worry so much about what other people thought. Now I think, "You can't please everyone, you've got to please yourself (I think that line comes from a Credence song)."
Truly the 'cat's pajamas', Nadja shares a simple thing we each can do to help make life better for those of us who face Social Security Disability Insurance.
Last night I attended an MS information session for those recently diagnosed with MS. The topic for the evening was financial planning and insurance. During the session I learned that many people with MS and other degenerative illnesses are forced to quit their job and then lose their health insurance as a result. If they do not immediately qualify for Medicare or Medicaid they are often forced to apply for Social Security Disability Insurance (SSDI).
According to the presentation, "To be entitled to Social Security benefits, a person must have worked 5 of the 10 years immediately before the disability and paid FICA taxes. The disability or impairment must be expected to last for at least 12 months." In addition, "A person becomes Medicare eligible 24 months from the date of the initial application for SSDI-once the SSDI award has been made."

Dear Mr. Legislator:
Here is my question Mr. Legislator: How can the government allow a sick or disabled person to wait up to 24 months for help? This seems unconscionable to me.
I am writing to ask that you provide more funding now for indigent care. I am also asking that you help change the laws that can make a person wait 24 months for the funding and care they need.
Additionally, I would also like to see more funding dedicated to helping poor,uninsured people with MS get their medications. I would specifically like to see funding to pay for interferons that slow the spread of the disease. I would like to see more funding for cortico steroids for those suffering a relapse or flare up of their MS.
Sir, thank you for considering my plea on behalf of those receiving indigent care and the MS sufferers who need insurance immediately.
Respectfully,
Nadja Tizer
*Blog Readers please send a letter like this one to your legislator today.
For information regarding current Legislative Issues identified by the National Multiple Sclerosis Society, please visit the Advocacy Toolkit and look here for tips on communicating with your Elected Officials including Representatives and Senators.

This concludes the 12th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on June 19, 2008. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, June 17, 2008.

Thank you.
Comments for this post.

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