DachshundStrong: Another beastly autoimmune disease~MS

20 October 2012

Another beastly autoimmune disease~MS

My eldest daughter, Kelli Lynne, turned 35 this past Friday.

A few weeks ago after a year of left sided pain her doctor attributed to compartment syndrome, they ran an MRI and found 8 lesions on the right side of her brain that smacked of multiple sclerosis.

After 5 days of unrelenting pain, even on 7.5 mg of Oxycodone with acetaminophen, she went to ER because her internist was on vacay in Africa and the doctor covering for him "didn't want to see Kelli because her case was too complicated".

So Kelli went to ER.

They ended up admitting her and starting her on IV SoluMedrol, a cousin of Prednisone, which was supposed to decrease the inflammation of her nerves and thus, with IV pain control (which she never got....they gave her FIVE MG of oral Percocet every 6 hours.

WAS

LIVID!!!

They did a lumbar puncture to determine what type of MS she has and the jury is still out. Her spinal fluid had sugar in it which they attributed to the SoluMedrol and her spinal fluid pressure was 28 (normal being 15) but since she didn't have a headache, they blew that off as well.

They did an MRI of her spinal cord, at least the cervical and thoracic and for some odd reason, they had to do the lumbar and sacral the next day which made NO sense to me since they already had her doped up on Versed for the CLOSED MRI and lumbar puncture.

This latest pain had been in her chest, back and stomach.

Guess what?

They found a new lesion on her SPINAL CORD in the thoracic area which would account for the newest pain.

This has only developed in the last month since the September MRI scan of the spinal cord.

There is no cure for MS and the lesions cannot be removed for they will just grow back.

She still did not rate any pain control and thus they sent her home with an appointment to see her neurologist on Monday.

She's already had an appointment with His Holiness and he has the bedside manner of a serial killer and told her at that appointment that MS simply did not have pain as a symptom...

Did I mention that he was voted the best neurologist in St. Louis for 2011?

I am SO FRUSTRATED!!!!!

So I am taking her to the appointment on Monday with my legal pad full of questions and may God show mercy on his soul if I do not get answers. Kelli is so depressed....as a nurse it makes NO SENSE to her why she is not being treated for pain, put on a medication full time to address the nerve inflammation and is about to give up the ghost.

Please keep her in your thoughts, prayers, chants or whatever way you support those with needs.

I'm still believing that there is help for my daughter whose insurance expires on Halloween.

Can you help her believe as well?

3 comments:

joanne said...: Oh Ness, it's time for the nut house for the both of us. I'm so sorry and scared for Kelli, maybe I should be scared for her dr! I know with Mama on her side that Kel with get her questions answered and sooner than later. It's got to get better, I insist, and I'm here for you (even if I'm not home much lately). You are in my prayers and yes, I do BELIEVE.; 20 October, 2012 22:30
Debbie said...: Oh no Ness. I am sorry about Kelli. With you with her, she'll hopefully find the answers she needs. I hate doctors that dismiss someones pain. I want to give them pain!!! ACK!!!
You know I believe!! It's all over my house! We have to believe, without believing, there's no where to turn.
I will do anything I can to convince sweet Kelli to believe.
Love ya!
God Bless~
Debbie
PS. When you and Jojo, go to the nut house, am I invited?; 22 October, 2012 01:56
Alice said...: Covering Kelli in prayer, Ness. Covering you all! Go get 'em mama bear. Don't take no for an answer and keep pushing until you get the answers you need. And if you need to change doctors -change it! Hang in there, mama. Love you all!; 22 October, 2012 21:12

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Proud Mother of an American Soldier

I am the mother of an American Soldier.
I give my complete and unwavering support to my soldier.
As my son serves the people of the United States, so I humbly offer up prayers for his safety and the safety and health of those he serves beside..
I respect his choice to adhere to a strict moral code and a system of values that has preserved our country over two centuries.
I accept that my soldier's first duty is to his country and I understand that this sacrifice he willingly makes is what keeps our nation great.
I will never expect anything but the best from my soldier, for I know he is capable.
I know that a soldier's heart is true and strong, and that my soldier will endure.
I will never abandon my soldier, my son. I will love him unconditionally.
He will know I am there with him, even when he is alone.
I am disciplined, emotionally and mentally tough, learning to wait for phone calls and letters or emails home.
I, like my soldier, am an expert.I stand ready to do whatever I can do to let my son, my soldier, know that we are here for him, behind him, we love him, and I will pray for the swift destruction of the enemies of our country.
I am the person who stood guardian of this man who has become my soldier, now our guardian of freedom and the American way of life.
I am the proud mother of an American Soldier

~Anonymous~

Quotes

Life isn't about waiting for the storm to pass.

It's about learning to dance in the rain.

You never know when you're making a memory.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
I am unwritten, can't read my mind.
I'm undefined.
I'm just beginning, the pen's in my hand, ending unplanned.
Staring at the blank page before you-
Open up the dirty window-
Let the sun illuminate the words that you could not find.
Reaching for something in the distance-
So close you can almost taste it.
Release your inhibitions, feel the rain on your skin.
No one else can feel it for you.
Only you can let it in.
No one else, no one else can speak the words on your lips.
Drench yourself in words unspoken-
Live your life with arms wide open.
Today is,
Today is, where your book begins
The rest is still unwritten.--Natasha Bedingfield
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
For what is it to die but to stand naked in the wind and to melt into the sun?

And what is to cease breathing, but to free the breath from its restless tides, that it may rise and expand and seek God unencumbered?

Only when you drink from the river of silence shall you indeed sing.

And when you have reached the mountain top, then you shall begin to climb.

And when the earth shall claim your limbs, then shall you truly dance.

When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Never allow someone to be your priority while allowing yourself to be their option. ~Author Unknown
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Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. We ask ourselves, Who am I to be brilliant, gorgeous, talented, fabulous? Actually, who are you not to be? You are a child of God. Your playing small does not serve the world. There is nothing enlightened about shrinking so that other people won't feel insecure around you. We are all meant to shine, as children do. We were born to make manifest the glory of God that is within us. It's not just in some of us; it's in everyone. And as we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others.-- Marianne Williamson
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Don't cry because it's over--smile because it happened.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
We Are Virginia Tech
~Nikki Giovanni

We are Virginia Tech.
We are sad today, and we will be sad for quite a while. We are not moving on, we are embracing our mourning.

We are Virginia Tech.
We are strong enough to stand tall tearlessly, we are brave enough to bend to cry, and we are sad enough to know that we must laugh again.

We are Virginia Tech.
We do not understand this tragedy. We know we did nothing to deserve it, but neither does a child in Africa dying of AIDS, neither do the invisible children walking the night away to avoid being captured by the rogue army, neither does the baby elephant watching his community being devastated for ivory, neither does the Mexican child looking for fresh water, neither does the Appalachian infant killed in the middle of the night in his crib in the home his father built with his own hands, being run over by a boulder because the land was destabilized. No one deserves a tragedy.

We are Virginia Tech.
The Hokie Nation embraces our own and reaches out with open hearts and hands to those who offer their hearts and minds. We are strong, and brave, and innocent, and unafraid. We are better than we think and not quite what we want to be. We are alive to the imaginations and the possibilities. We will continue to invent the future through our blood and tears and through all our sadness.

We are the Hokies.
We will prevail.
We will prevail.
We will prevail.
We are Virginia Tech
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
"Today we are all Hokies."

4/16/07
God bless Virginia Tech, Hokie Nation and the families and friends who were changed by the senseless act of violence on that day. May the peace that passes all understanding be yours one day.
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Desiderata

Go placidly amid the noise and the haste, and remember what peace there may be in silence. As far as possible without surrender be on good terms with all persons.

Speak your truth quietly and clearly; and listen to others, even to the dull and the ignorant, they too have their story. Avoid loud and agressive persons, they are vexations to the spirit.
If you compare yourself to others, you may become vain and bitter; for always there will be greater and lesser persons than yourself.

Enjoy your achievements as well as your plans. Keep interested in your own career, however humble; it is a real possession in the changing fortunes of time.

Exercise caution in your business affairs, for the the world is full of trickery. But let not this blind you to what virtue there is; many persons strive for high ideals, and everywhere life is full of heroism.

Be yourself. Especially do not feign affection. Neither be cynical about love; for in the face of all aridity and disenchantment it is as perennial as the grass. Take kindly the counsel of the years, gracefully surrendering the things of youth.

Nurture strength of spirit to shield you in sudden misfortune. But do not distress yourself with dark imaginings. Many fears are born of fatigue and loneliness.

Beyond a wholesome discipline, be gentle with yourself. You are a child of the universe, no less than the trees and the stars; you have a right to be here. And whether or not it is clear to you, no doubt the universe is unfolding as it should.

Therefore, be at peace with God, whatever you conceive him to be, and whatever your labours and aspirations in the noisy confusion of life, keep peace in your soul. With all it's sham drudgery and broken dreams; it is still a beautiful world.

Be cheerful. Strive to be happy.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Recently I overheard a mother and daughter in their last moments together at the airport. They had announced the departure. Standing near the security gate, they hugged and the mother said, "I love you, and I wish you enough." The daughter replied, "Mom, our life together has been more than enough. Your love is all I ever needed. I wish you enough, too, Mom." They kissed and the daughter left. The mother walked over to the window where I was seated. Standing there I could see she wanted and needed to cry. I tried not to intrude on her privacy, but she welcomed me in by asking, "Did you ever say good-bye to someone knowing it would be forever?" "Yes, I have," I replied. "Forgive me for asking,but why is this a forever good-bye?". "I am old, and she lives so far away. I have challenges ahead and the reality is - the next trip back will be for my funeral," she said. "When you were saying good-bye, I heard you say, 'I wish you enough.' May I ask what that means?" She began to smile. "That's a wish that has been handed down from other generations. My parents used to say it to everyone." She paused a moment and looked up as if trying to remember it in detail, and she smiled even more. "When we said, 'I wish you enough,' we were wanting the other person to have a life filled with just enough good things to sustain them." Then turning toward me, she shared the following as if she were reciting it from memory.

I wish you enough sun to keep your attitude bright no matter how gray the day may appear.
I wish you enough rain to appreciate the sun even more.
I wish you enough happiness to keep your spirit alive and everlasting.
I wish you enough pain so that even the smallest of joys in life may appear bigger.
I wish you enough gain to satisfy your wanting.
I wish you enough loss to appreciate all that you possess.
I wish you enough hellos to get you through the final good-bye.

She then began to cry and walked away.

They say it takes a minute to find a special person,an hour to appreciate them, a day to love them; but then an entire life to forget them.

To all my friends and loved ones, I WISH YOU ENOUGH.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I walk down the street. There is a hole.I don't see it. I fall in. It isn't my fault. It takes a very long time to get out.

I walk down the same street. There is still a deep hole. I pretend not to see it. I fall in. I pretend it's still not my fault. It takes a long time to get out.

I walk down the same street. There is still the same deep hole. I see it. I fall in anyway. It's a habit. I get out quicker this time.

I walk down the same street. There is a deep hole. I see it. I walk around it. I don't fall in.

I walk down a different street.

Portia Nelson
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

May you be blessed with as much good as your heart can hold. May you always find a way to recognize what is important and holy in a life which can sometimes be painful. Life is a classroom and we are both the students and the teachers. May you find ways in which to learn from all of the experiences of your days, and may you sometimes stop to contemplate who your teachers are and who your students might be. Distinguish what is real, and hold fast to it. Balance.

Deb at Four Angels Mama-a very wise woman indeed.
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The Spoon Theory

The Spoon Theory
by Christine Miserandino www.butyoudontlooksick.com

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?
I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said "Here you go, you have Lupus". She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.
I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a "loss" of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.
She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of "spoons". But when you have to now plan your day, you need to know exactly how many "spoons" you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started yet. I’ve wanted more "spoons" for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.
I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said " No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can't take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too." I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.
I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your "spoons" are gone, they are gone. Sometimes you can borrow against tomorrow’s "spoons", but just think how hard tomorrow will be with less "spoons". I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on "spoons", because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.
When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly "Christine, How do you do it? Do you really do this everyday?" I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, "I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared"
Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons".
After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said "Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted "spoons" and I chose to spend this time with you."
Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my "spoons".
© 2003 by Christine Miserandino Butyoudontlooksick.com

The Dash

I read of a man who stood to speak at the funeral of a friend...
He referred to the dates on her tombstone from the beginning to the end.
He noted that fist came the date of her birth and spoke of the following date with tears...
but he said that what mattered most of all was the dash between those years.
For that dash represents all the time that she spent alive on earth...
and now only those who loved her know what that little line was worth.
For it matters not how much we own the cars... the house... the cash...
what matters is how we live and love and how we spent our dash.
So think about this long and hard are there things you'd like to change?
For you never know how much time is left that can still be rearranged.
If we could just slow down long enough to consider what's true and real...
and always try to understand the way other people feel.
And be less quick to anger and show appreciation more...
love the people in our lives like we've never loved before.
If we treat each other with respect and more often wear a smile...
remembering that this special dash might only last a little while.
So when your eulogy is being read with your life's actions to rehash...
would you be proud of the things they say about how you spent your dash?

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20 October 2012

Another beastly autoimmune disease~MS

3 comments:

Praying for Our Soldiers