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Oliver

Oliver
My therapy dog

Welcome to The MS Chronicles!

Thank you for visiting. This blog was created by me, Cristen Salter, for other MS patients and their families in order to help them and myself cope with and face this disease. All information that are not personal experiences are thoroughly researched and cites are created in link or reference form. If you have a burning desire to ask me a question, please do so at cristen.salter@gmail.com. Enjoy and I hope you glean comfort, education and room for compassion for all those who suffer from this disease.

Tuesday, January 19, 2010

Good days; bad days

Dear Ms'er's:

This is my first post, although I set this up when I was initially formally diagnosed in 2008. I had one attack before that in New York at the age of 26. The doctor told me I had it but that 1) there was no treatment at the time and 2) I would create a mess of my life with insurance and pre-existing conditions. So I left with a bottle of Prozac and the numbness on my right side eventually disappeared.

I buried that secret deep inside me and did no research whatsoever; so I never knew definitively if I was going to see more of the same. I often got numb feet, tripped easily and went blind in my right eye. I also had horrible burning headaches that would not go away no matter what I did and fatigue that I used tons of caffeine and sugar to stave off. I got vertigo often. Tingling from my neck to feet. Weakness in my right leg. But I knew that if I went to the doctor and asked for a diagnosis, it would change my life forever. Boy, I sure underestimated that!

Then in March of 2008 I got numb on my right side all over again. I had just gotten insurance, so I set up an appointment. However, I forgot about it as it went away and ended up with a physical and a clean bill of health. Then it came back in April. I decided not to go to the doctor as the numbness went away so fast the previous month perhaps it was a virus?

May passed with no numbness. In June I usually visit my friend Johnnie as we have close birthdays and I go to LA. Two days before I was to leave I woke up completely numb on both sides and stiff on my right side. I got in with the doctor right away, and my GP was on vacation, so there was a new fill in GP. He began asking me questions about all the symptoms I had in the past - the burning headaches, blindness, numbness and frequency, and I denied everything. I told him it happened to me once before in my 20's and the doctor gave me Prozac and it went away. This doctor looked me straight in the eye and said "I bet if I do an MRI it will come up consistent with Multiple Sclerosis". And I replied, "Oh no way, that does not run in our family". Then he looked at me, I looked at him, and his eyes just pierced my soul and the realization hit me that the gig is up, I can no longer hide from this disease. I cried while I waited for his orders to get MRI's.

The next day, the day I was to leave to LA for my birthday, I was getting an MRI. I was feeling so uncomfortable - my arm was stiff, my body was numb and I wanted it to go away for my trip. I got the MRI's and three hours later left for LA.

The pain became excruciating. I could barely walk. My body was numb. I could not sleep because of pins and needles all night. My right arm was stiff and the other side came and went. To top it off, it was 113 degrees every day. Johnnie hung in there with a positive outlook. I just wanted some drugs to knock me out until it was over. Johnnie's apartment was small and hot. Eventually I had to ask my brother if I could stay with him at his house ( he lives in LA). I left on a Friday and by Sunday the symptoms had eased. Nothing prepared me for the phone call I got from the doctor on Monday morning, which was also my birthday.

I am a Gemini. I believe everything is changeable and negotiable; even death. My favorite saying was, "this, too, shall pass." This was my freedom from all bad situations, my negotiating point. Until that day, at 9 am. Doctor Park, the one who ordered the MRI's, told me my scans were consistent with MS. He then got me an appointment with a neurologist. At that time, no one was home. I was alone. I remember thinking of all the people who were waiting to hear of my results.

I looked down at the phone and thought to myself, this will not pass. There is no cure. It is not negotiable, nor is it changeable. My entire foundation of my personality, the light in my eyes and the beliefs I used as inspiration for others was gone. I took a moment to breathe that in, and the shock was overwhelming.

I then called my best friend, Erin, who cried like a baby on the phone. I called my dad who cried. "The family will come together for you on this." I told him, "I will never be a lawyer now!" and he replied, "Yes you will, you will be the new Perry Mason!" My mother wanted Doctor Parks' phone number immediately. Was it a diagnosis or consistent with and we need an expert opinion? There is no need to freak out, we need more information. Head stuff (she is a social worker). "Isn't it great you have such a great friend like Erin to help you?" Erin is my best friend and roommate.

I then saw an expert who pointed all the spots out on my brain and spine and officially diagnosed me. We then had a fight because he needed a battery of blood tests to give me any pain meds, and I switched doctors.

The real MS journey began there. It has been so much more difficult than I thought. My fear sometimes becomes the worst part. I read stories about others and I get scared. Will that be me soon? Will I poop the bed? Will I pee my pants? Will I lose my independence? Will my family take care of me, or will I end up in a place where no one cares and I am forgotten? Worse, will I forget everything in my life and become someone with no identity? When I meet a new man, do I tell him he might have to wheel me around in 20 years? Will they all run?

Like everyone with MS, I have gotten medication and I have good days and bad days. On the good days, I don't want to go to bed; I want the day to last forever. On the bad days, it's life as usual with lots of pain.

That's it for tonight. I promised my roommate I would get up early and begin the LSAT study crunch. I will end with this, which my father tells me all the time - look up, it keeps your spirits up.

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