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. ; )

The lessons M.S. is teaching me

One is finding a better way to deal with stress, how to avoid stressful thinking and I hope to learn how to still think about the things in life that come up but without so much stress and having that stress ruin my energy.
Last week my thoughts revisited my financial worries of being unable to work and that Social Security, when it finally does start, won't be enough to live on, and my mind just goes off in a tumbling knotted ball of worry.

I tell myself the good things I have learned and read about dealing with stress and worry. I remembered a quote by Dan Zadra that states, “Worry is a misuse of the imagination.” But then I fight back with thoughts of, “But I have to think about this stuff. This stuff has to be dealt with. These problems are real.” Sometimes the good thoughts and knowledge I have encountered don't replace my fears and worries with any comfort.----------------------My worry is stronger. That's because my mind is powerful.

So I see, I can use the strength in my mind to channel my mind for how it's the complete BEST for me in my thinking.

So now I have decided, as I have before but need to practice again, to schedule my worry time instead of having it be the ongoing nag in the back of my head. I'll schedule an hour or so only once a week that I allow myself to think of the things that need to be thought about but stress me out, so when a worry comes up randomly, I can think, “Shush, go away, I will think about you on Thursday.” But most importantly before I open those worry doors on my allowed worry time and let the worries zoom in, I will meditate, do breathing exercises and achieve a calm mind. I see I can choose which emotions I want to put on situations that happen and I will continue to practice, practice, and practice this idea. Then from my calm center I can look at the problems and ask myself, "How important is this? Is this really going to happen? What if something works out? What would I like to have happen?"

I will remember to take a deep breath often and think slowly. I heard singing about our worries is a way to calm them down so maybe I will sing in a slow calming melody and slowly state my thoughts. This could help disect the gnarled tangle of thoughts that have offshoots connecting to other worries. I will try to break the thoughts down to smaller pieces so I can see what is REALLY there and what is just an intertangled worry that has no real ground to stand on and take up space.

I am learning to sit back breathe, relax, let my worring go and calmly tell myself, “There is a way it will ALL work out,” and feel the peace of it even if I still don't have answers. Even if I don't have answers to what to do about my situation I can still sing about it to get the feelings of worry out. Perhaps that will help bring me back to peace.

I remember the song by Paul McCartney, Let It Be.

So finding peace even in times of worry is a lesson my MS wants me to truimph.

I wanted to join someone's blog but with confunsion of blogger.com I wound up  following mine and I can't get rid of me on my followes link. Ugh. Well I guess it's good to be a follower and supporter of ourselves too. : ]

Charisma of Full Essence

Yesterday I saw part of the Superfest Disability film festival showcase.

It was inspirational.

The first film I saw was Loud, Proud and Passionate. It was a march of people with many different types of disabilities from many countries were singing and chanting their pride. Seeing their smiles, community, happiness and pride about being disabled was uplifting.

Some were blind, some deaf, some had physical disabilities they were born with. They looked so happy and their acceptance and pride was empowering and I cried. I was in public but didn't care. It felt good to cry. Mostly it was from happiness but some from sadness of my disabled life change. I realized and felt pride these are my people now since I don't fit into my past world and my ability to earn an income and my previous identity is gone because it's unattainable.

I see I don't and won't ever fit into my previous world that so many people I know and see everyday in the world get to be in. Seeing the film of these disabled people I saw this is my world, my new world. These are my people, I am like them. Seeing their acceptance, smiles and happiness brought on a lot of emotion for me.

Then I saw Voices from El Sayed. It's the largest deaf community in the world. It's in the Negev Desert in Israel.

Then I saw, The Greatest Show on Earth.

That film was about a deaf woman who wants to dance in the Carnival in Rio de Janeiro and has to win a competitive try out. With my balance problems I will never be able to do much dancing but it was still uplifting to watch and feel the contagiousness of their happiness. I felt it too.

I do look for the goodness in everyday and things to be grateful for and it feels great to in some way be able to feel my charisma of full essence.

Accepting The Many Rest Stops of Each Day

I feel like my view of life each day is similar to looking through venetian blinds that have been rotated to having a slight angle of the blinds with each tilted slat being a nap. My day goes a bit, then time for a nap, then up again go for awhile, then need to lie down again even if I was only just sitting up reading for 40 minutes then I feel mental fatigue again I have to lie down.

I see how my life is full of mandatory rest stops.

Often I am geared up and getting things done and have so much more I need to do or want to get done but my mind, body or my essence gets tired and I have to lay down ….again.

Yesterday while laying down and trying not to be grumpy about it, I decided to think good thoughts and that all my rest I have to take can be a chance to reconnect with my subconscious. I was reading this is where our natural and creative feelings come from. So when I lay down I turn off the conscious thinking brain and let happy feelings be the essence.

I remember and feel the creativity I enjoyed when I was younger. I liked coloring and watching the color mark the page, seeing it's color form texture of the marking. I feel the fun and happiness in my life as a child. I enjoyed riding my bike and had playing cards I clothespined to my frame to hit my wheels so it made a sound and I pretended it was my motorcycle. I would pretend kick start it and then turn on the yellow round 70's radio that I taped to my handle bars and then ride away. Clomp,clomp,clomp,clomp being the sound of my bicycle.

I bring these happy feelings from these memories to embrace while laying down for yet another nap. It's a time to reconnect to myself. So I am trying to be good to myself and be happy instead of upset that I have to stop what I'm doing again and no that won't get done today again, and there's so much I want to do! : (

The rest stops have to happen even though I sleep 7-8 hours a night and sometimes take up to 4 naps. When meditating on this the day before I felt happy so in my resting I tried to reconnect with that happy feeling and I tell myself I'm getting better every day. I create happy things to feel even if they're not true...(at the moment. I am stubbornly optimistic : ) So I am beginning to be OK when my body tells me it's rest stop time. I try to smile about it and look forward to my happy place invitation.

Stem cell research

I am so happy. I came across this article about Myelin repair in stem cell research from University of Buffalo. I am thankful for all the M.S. research that is out there. Repair and a cure is seeming closer as we move forward.

Message body

http://www.buffalo.edu/news/12952

Bird Fly Dance

I wrote this a ways back but I am posting it now because it's a good day to remember to count my blessings.
......................................................................................................................................................................

I completed my errands needed for M.S. which was returning my library books, getting a sharp box from Walgreens and dropping something off at my lawyers office . I have to use the bathroom and need to sit down and rest. I am near the restaurant a friend took me to that has good and affordable food. I order at the counter I finally get to go to the bathroom. I have been holding it awhile.

Finally - In bathroom, bag down, pants down, relief is near, but then I notice no toilet seat covers and there's pee all over the seat. I don't want to touch dirty butts or have wet butt checks from someone's piss all over the seat, so I take extra time to dry the seat and then arrange toilet paper strips to line the seat so I can sit in cleanliness and pee. : )

Knees bent and gravitating to the pristine seated position that's when I saw it – a large fly the size of perhaps a small new born bird...well at least the first joint of a large and wide thumb. It flies up to the ceiling then down about 4 inches above the ground.

Automatic motion kicks in. Seated gravitation reversed, I try to step on it with my pants still around my knees. Oh the thought process and actions that go into haphazard defense when serene moments don't exist. I hobbled and side stepped around trying to step on it or shoo it away from me, having the MS balance issues makes this a challenging experience. I pull up my pants and opened the bathroom door trying to shoo it out. It's gone...but it did not fly out the door ... I know it's still in there. It is hiding, probably behind the toilet laying eggs and starting a new settlement.

Well, I'll take this opportunity with bird fly out of sight to pee. OK pants down again, seated on the pristine, dry and clean toilet paper. Ah. I'm almost done, then Buuuuzzzzz, it flys out again and goes to the all the walls and then to the sink then returns to circling the room, it won't hold still. I cover myself and keep my eyes on both sides of toilet seat and panties to shoo it away from me if needed. I know I shouldn't worry so hysterically much, but it is extra large and extra gross and I don't want any of it to touch any part of me. Buuuuzzzz...mmmzzz by my foot, I try to step on it. Dang, missed again. It's freedom continues to populate the bathroom. I wipe, hop up, pants up, and wash hands with my eyes working as surveillance beams scanning the surroundings for it's location. It flys up to the door. Quickly I open it for the bird fly and shoo it out.

Yes, it's gone! I'm happy the next person won't have to go through that.... wait, I hope it doesn't go into the kitchen and touch anyone's food. I bring peace to myself thinking if it does go in there they will definitely see this airliner 747 bird fly and perhaps release it to the huge open sky where it can fly freely with it's large grotesque size.

I go to my table and sit comfortably, take a deep breath and remind myself to count my blessings. I'm practicing the metaphysics of good thoughts to help me with my M.S. and in life. Every night I count my blessings of each day. Tonight I will surely include:

1. I didn't fall over and I'm impressed with my compromised M.S. shoe stomping moves. They are Olympic gold metal worthy.
2. No part of the bird fly touched any part of me. : )

Telling my Mom

My first thought when I got diagnosed with multiple sclerosis in March was, how am I going to tell my mom - my loving, high blood-pressured, easy to stress out mom? I want to keep her calm and her blood pressure low.

She knows I have medical stuff going on, I had to cancel my Spring Break plans to go home because the doctors said I am not fully diagnosed although it looks like M.S. and I'm not medicated also travel can be stressful on M.S. They want to do another MRI. So she's waiting for more medical answers about what's going on with me. Then I got the final diagnosis.

I was nervous about telling her. She's gonna be shocked and upset, it doesn't run in the family. This will be weird news and difficult to share.

One thing about MS it messes up my memory and I get words mixed up often. I told a friend the doctor prescribed me Aveeno. After her laughing hysterically she corrected me, “Aveeno is bath soap, you mean Avonex.”

When I did tell my mom I was prepared with a friends suggestion to tell her all the help that's provided and the good things. That will help keep her calm. My friend and I practiced and I got to a point where I felt that my delivery of the news would go well. I call her. Deep breath, I can do this. I had a pleasant, calm tone, made fun small talk for awhile and then decided I was ready to calmly tell her.

“Now I finally know why I'm tired all the time and keep running into walls. I've been diagnosed with S&M”...shocked I realized what I said.

The mind has the ability to go 100 miles an hour in analyzing, calculating, weighing ratio's, outcomes and carefully planning how to get through a crash landing like this. The mind can think multidimensional novel chapters in nanoseconds. I ran through several options of how to correct what I said without drawing attention to it upsetting my Southern Christian, quiet mom who sings in the church choir.

Gosh, out of all the people I make this mess up to. She was so quiet about it I thought, whew, she doesn't know what S&M is. I decided to correct it by saying the things I practiced with my friend and end the sentence correctly in same calm tone rather than correcting my mistake which would bring attention to it and then having to talk about cognitive challenges with M.S.

So I continue, “and it's OK. There are support groups, community and lots of help with ” [remember, remember, think, M&S runs through my head, then I mentally run through it again dropping the &. ] “M.S.” It's amazing I could do that much thinking while saying the sentence, so no pause before saying the word. I said it smoothly.

Now what can I tell her next, oh the books I have read about M.S. “There are many informative books at the library that talk about cures, treatments and living life with it.” Then suddenly I remember a scene from the original 9-5 movie when the newly divorced character played by Jane Fonda sees her x husband and to show how much she's changed and is a different woman, she states “...now I'm into M&M's,” not really knowing what she's talking about.

Remembering this scene makes me want to laugh. I feel it in my throat like a slight vibration, I swallow and try to suppress it. In the suppression of laughter and continuing to speak my voice gets tight and a little higher pitched. I can feel the tickle of laughter tempting my throat as I try to continue with my calm soothing attempt and say, “there are friends, people to call and web sties.” My voice is noticeable different. What if she thinks I'm really upset and about to cry. Darn my plan to keep her and me at this point calm is not going as smoothly as I practiced with my friend. Trying to suppress the laughter causes me stress, telling her I have MS is stressful and stress is bad for M&M's...I mean M.S.

OK reclaim my calmness and confidence that this is going OK.

“My life isn't over, it's just changing. It will be OK.”

Synchronicity of Smiling

The day after my last post my driver of the Mobility Plus van, which is a door to door service for the disabled, randomly brought up in conversation his use of smiling and feeling happy. We talked about the healing power of smiling. I mentioned how smiling while thinking about a problem changes my emotions about it.

The power of receiving a smile is like receiving a gift. One day I was walking down the street, a sweet elderly lady smiled at me and it was the best part of my day that day. The kindness of strangers and the lasting power of receiving a smile can be amazing.

I remember studying in massage school that body and emotions are connected such as how depressed people slouch. Standing up straight, having shoulders back and down helps to open the chest and gives someone more confidence. I have experienced how smiling even a little with my lips closed and eyebrows slightly elevated can change my mood and my thoughts. When I have a smile on my face, my negativity and worried thoughts go away or at least lessen. Something about that, I guess because the muscles have memory so making a happy face brings happier emotions.

I love the alignment of life, how thinking, speaking or writing about something then it reappears again in life soon afterward. This is the synchronicity of life. Life is listening and responding.

MS - the gift

When I was diagnosed I was told not to be afraid, MS is a gift, it helps people slow down and enjoy life more. Since then I have also read in M.S. books and websites that people enjoy slowing down and getting a chance to appreciate people more and noticing things in life they used to whiz past not taking the time to enjoy. M.S. as a gift.

My initial internal response, MMPH. : (

I lost so much, my career as a massage therapist, my income, all my savings, my relationship and now physically unable to go to school and stay awake long enough to read my homework and study.

So in getting used to my diagnosis and trying to find any OK-ness I could with this extreme life change, I took it to the bathroom mirror and used my ham of resilience acting. I smiled real big, tried to make it look authentic, deep breath, relax, smile again, bigger, see my eyes sparkle with my inner light, feel happiness and say so proudly and honored, “I have M.S. It's a gift. I am so lucky, my life is great.” Big smile. Say it again, then again, SMILE, feel the happiness, SMILE like it's the best news in the world, like I'm saying, “I got published for a lot of money, I have a loving partner, my life is great!”

I had to practice admitting and getting used to saying, “I have M.S.” It was so difficult to say at first but my smile acting did help to say it. SMILE. “I have M.S.” SMILE.

I do accept it now and am proud. Life is so much better with acceptance.

Off balance blood draw

Blood draw as routine part of M.S. test for my Vitamin D levels. It's another wobbly day. I make my way in and sit, good so far getting to the chair, I roll up the sleeve and place my arm in foam arm elevator they use for blood drawing. It goes well, I can sit here OK and won't fall over. Then the blood draw is over and I stand up to leave, put on my two jackets, then bend over to pick up my bag that I laid on the floor. I fall forward and knock the foam arm holder off onto the floor, I try to catch it quickly but end up stumbling into the trash can where they dispose their gloves after drawing blood. All these blue latex gloves fall out onto the floor. I think, I am a mess, causing a mess, and the need for sterile clean up. The lady is nice and calmly says it's OK, she'll take care of it. I successfully pick up my bag this time by holding onto the desk, I apoligize and cautiosly take steps out of the room not to knock into anything else with my off balance gait. Whew, off balance and clumbsy are new forms of me to see as an occurring event. People are going to start dreading when they see me approaching. This is so great for my self esteem.