Begining Symptoms

Beginning symptoms

2004

Standing in a friends backyard I kept feeling like I was going to fall backwards. I leaned against the fence and we laughed how how weird it was I was feeling that way and we joked it must be because in the pavement covered city of San Francisco I was used to walking on pavement and not standing on grass. I didn't know I had M.S.

2008

One day I couldn't move my left arm which was a problem since I was a massage therapist and needed both arms to do my job. I thought it was related to being car doored when riding my bicycle in 2004 which tore my left anterior Deltoid muscle.

Physical therapy helped me get back to my career then but it didn't help in 2008 when I was living in Oakland, CA. Actually I was told by an aware physical therapist I failed physical therapy and he said there was probably something nerve related going on. By this time I needed help getting dressed and cooking and opening my Advil bottle. I told the doctors. They told me to take Advil every 4 hours it will get better eventually.

My neck hurt and when my girlfriend massaged it I asked her to press as hard on the left side as the right side. She said she was, I couldn't feel it. I told the Doc; he didn't think anything of it.

2009

Then I started walking into walls. I would pick up my left foot and my mind would think I was going to walk forward but my foot would go to the side and I'd crash into the wall. Reaching for something was similar like reaching for a CD my hand would go to the side to another CD even though I was looking and mentally intending to reach for where I was looking. Also the fatigue began, sometimes sleeping many hours during the day, I wasn't depressed just tired. Doc didn't think anything about my fatigue, walking into walls, unable to pick up things I was looking at, neck hurting and not feeling the pressure on my left side of my neck. Nope just take the Advil, it will get better eventually.

Then when sitting with a neurologist looking at a MRI of my neck and shoulder I noticed a little white dot on my neck and pointed it out. He didn't think anything of it!!!! HELLO THAT IS M.S.!!!! He is a Orthro neurologist. I have learned that specialized medicine is very DANGEROUS!

2011

So M.S. continued to eat my body and I wasn't diagnosed until 2011. Now M.S. has taken so much I can't work full time or make enough to live on even with S.S.D.I. so I'm struggling looking for a part time job I can do with my M.S. fatigue and changed concentration abilities.

Specialized medical areas NEED to understand the FULL body not just their area. This is my call to us M.S.ers to ask to have proper fully trained doctors in all areas even in county hospitals and everywhere.

The body is ONE COMPLETE UNIT and must be understood. It does no good to have people deteriorate when there is a way to catch problems and keep people able to live their full potential.

A healthy nation and world is one of compassion and full health for all! Not just about medical cost and pharmaceutical companies.

Look how much of their money, if that's all they care about, could have been saved as well as my anguish and pain and loss of life abilities at a young working age of 40, if all were educated completely about M.S. I had enough M.S. symptoms they should have seen the signs and looked into it and clarified M.S. and save me and their money.

This is what I call for-- M.S. Education and Recognition in ALL departments and hospitals! Catching and halting M.S. and all diseases! As it is better for ALL PEOPLE AND BUSINESSES!

Post Sandy

I was happy to see this on msworld.org for help getting through this upheaval of Hurricane Sandy.

http://www.msworld.org/search/node

My thoughts and well wishes go out to all who live there.

A tired M.S. weekend. Spent my Friday night taking my auto-injector Avonex shot, spent all day Saturday and most of today until 4PM in bed feeling still tired and not confident in my balance.

But when I finally got out into the world to be out and run some errands my energy finally picked up and I became happier and happier being out on a beautiful day and people were so nice, really nice. It seems my enthusiasm of finally being out was contagious as other people 5 workers at 3 stores were happily helpful, so generous and kind. It was joyous.

It's wonderful to see such a big happy change when I spent sooooo much time in bed.

Patience and not giving up hope for better energy are two ongoing lessons in this disease. We learn so much.

Envy

There's a spider in my bathroom that is extremely productive. It builds this tightly crafted web in the same corner everyday. One of my housemates clears it away each morning and only two hours later everyday I see it rebuilt to exact completion of the web. It is a nice looking web and quite large as it goes about 7 inches from wall to wall in the corner and it even has different floors as if it is a drawing of a 3 story house plan. This project is rebuilt every day for a couple of months now. I haven't even seen the spider. It must work quickly.

On a day I felt envious and inferior since I can't do as much as I used to be able to do and I hear from my friends about what wonderful productive things they did or get to enjoy in life. I feel saddened by my ongoing and growing recognition that I will never be able to have jobs like them, get as much done as them, go on fantastic beautiful vacations or go skiing like them. I won't be able to organize and create like them as my life turns slower with my disease.

The other day my Mom and I were talking about not getting caught up in comparison and envy, and a meditation DVD I have mentions letting go of our comparisons and envious thoughts. I started laughing because I remember thinking of the productive spider and how I was jealous that it could rebuild it's web everyday so beautifully yet for me there's not much I can do, even changing clothes seems like a chore somedays.

Seeing the happiness in everyday and paying attention to my thoughts are some of the things I have learned from my mom, meditation books and tapes and I have to practice with this disease. Lately when I see the web I actually smile at it's beauty and it makes me happy to see it. I don't feel jealous that the spider doesn't have M.S. and can do that everyday. Instead I laugh at myself for seeing how my altered state of this setback has come to this – being jealous of a spider's beautiful web design.

I wrote this while listening to This is My Life by Shirley Bassey the disco version and it made me happy and helped me embrace my life with more happiness.

Fireworks

Too tired at 10:30pm to stay up until midnight to see our fireworks here in California. I was ready to call it a new year and go to bed, so I thought of other places that have already had theirs, New York and other East Coast states. I went to Youtube.com to see if any were posted on there. I came across some but the prize winning for me that night was Sydney Australian fireworks.

http://www.youtube.com/watch?v=_crNUYe3q8g

They had great aerial and ground views. An amorous lengthy line of purple, pink, yellow, white, red and more bountifully colored fireworks from numerous places up to the Sydney Opera House was BEAUTIFUL and a sudden thought came to me about the natural energy light that's inside me in many places all throughout my body.

I have been trying to get in touch with my inner strength and best mindset. I am trying to work on my energy not only my physical energy but also my mind, thoughts, attitude and emotional comfort of this M.S. life and this huge life change.

That long line of fireworks in Sydney Australia gave me a keen spark of transcendental understanding. That was a great sight and feeling for beginning a New Year and a New Attitude.

I happily curled up in bed early. I had my New Years and would wake up to a great tomorrow. I wish us all a great year.

The New Brain

I went for my first time to a weekly group about embracing life as getting older. The group is called Staying Engaged for a Lifetime. It's formation is to help people feel and learn ways to further be in touch and be mentally active in life. It was initially intended for for seniors, those who are not working anymore, but since with my disease I fit into not being able to work anymore and parts of my life are gone forever so I figured I would fit into this group and it might help with my daily dealings of learning how to still strive and find a way to grow and learn.
 

I went and was not the only person under retirement age. I walked in happily and was greeted kindly and walking to a chair. I accidentally bumped heavily into a chair where an 80 year old woman was sitting, she grinned sweetly, I apologized and then when taking off my shoulder bag it fell forward and hit me in the forehead. Ouch. I got into my chair and thought, good I made it this far and now I'm safe in a chair so no more bumping into other people or hurting me or possibly others.

We watched a film called The Brain Fitness Program. It was about brain neuroplasticity. It talked about how the brain can create other pathways to do things that we lost. It talked about people who have alzheimer's, stroke or brain injury. It talked about and showed graphic depictions of the myelin and how communications travel through those yet people can develop other pathways to still have those abilities if they are damaged.

I have been noticing my memory and concentration skills depleting. I have on my own been doing math for fun and practicing spelling because I am seeing that I forget words and my spelling has gotten worse. But I am still forgetful in so much. I often get to a room and realize I forgot what I wanted to take or bring in there. And I want my cognitive skills to get better, making decisions and figuring stuff out has been an increasing challenge.

The film was inspiring in that it gives me hope that the brain can reform itself.

They talked about learning a new language or learning new dance steps. They talked about how memory can increase when combined with another sensation like a sound or touch.

I will keep practicing and trying new things to see if I can get and keep my brain as strong as it can be. And it is a strong help to know that it can be done....so c'mon brain, create new pathways.

Mom talks about f.e.a.r. and calmness

Last night I had a good talk with my mom. We were talking about me worrying and getting down about things and being worried about not having enough money to life on and dealing with my case worker. She said something so helpful.

She said, "Worry and fear go together. When you are worried about something it's about the fear of something that you are trying to avoid. Think of the word fear. How it's spelled? Spell it."


"Ok," I said, "fear, f.e.a.r."

She asked, "Do you know what the f stands for?"

"No," I replied.

She said, "F stands for false.

E stands for,"

She broke the letters down to me.

f. false

e. evidence

a. appears

r. real

"This is what makes us worry," she said. 

This does make more sense to me now.

She told me to stay in my good mind and good energy and feel those good emotions. Don't worry about the what if's or what doom I may think is going to happen or how bummed I will be if it does happen.

We talked a lot about the things that make us happy and to do those things more often even if I have things I'm working through with my case worker and my finances, still take the time to be creative, write or draw, create something since that is calming and keeps the other part of the brain exercising and functioning.

These are things I think but it's nice to hear it from my mom. That makes it even more real and not just a quiet thought alone in my head. Just thinking about it doesn't always mean I do it and many, many times I haven't taken the time.

Creating something is relaxing, even if I just draw some not so good pictures or just draw designs, it's a connection to a different part of my brain and it feels good. I will try to do more of those types of things. I can plan and set a time when I can and will do something like that. Even if it's just 5-10 minutes of doodling, I can do that and I may even get out the crayons for some color. ; )