Is That What I Sounded Like?!

Look what I found! A music CD of four songs I recorded six years ago as a Christmas gift for Bryan when he served his mission in France. The first song is sung in French. I hired the French teacher at Andrew's junior high school, for a couple of hours in the evening every day for a week, to teach me to pronounce the words correctly. Then I took my friend (who accompanied me on the piano) to a recording studio where I sang all these songs. It was a fun experience for both of us! I know that a CD is small, but it represents many hours of work as well as my love for my son. Click here for the song.

The second song is music that my friend gave me a few years ago. I sang this song numerous times as it seemed to fit the range of my voice. Click here for the song. The third and fourth songs are ones I've known for 30 years. I sang them in duets many times. They bring back many happy memories! Click here or here for the songs.

Now that MS has changed my voice and caused me to no longer sing, I hear these songs and ask, is that what I sounded like? I never liked hearing my voice but it doesn't bother me now that I don't sing. Music (singing, playing the piano) was a big part of my life. 

I still love to hear great music! I have an appreciation for it and know some things intimately. I think I'll always love to hear singing. I love instrumental music too but I love hearing voices most. 

Shortly after getting sick, I sat at the piano thinking about what a bummer it was that I could no longer sing and play. A thought in my mind reassured me that I'd be able to do it again in heaven. At that moment I knew that even though I'd no longer have those skills on earth they'd be restored to me eventually; somehow I felt okay with that. From that time forward to now I haven't/and don't feel a longing desire that can never be satisfied to sing and play-I'm not sad. Granted, I don't do things that could lead to me feeling upset and I'm okay with waiting because I know I won't have to wait forever.

Back to my CD. Isn't it a great thing to have?!

According to a Talk I Heard, Stress is Good

A Talk About Stress

I heard a really interesting TED talk today by Kelly McGonigal called How to Make Stress Your Friend.

• She talked about how thoughts are manifested in the body - so if a person thinks stress is bad they have a higher risk of something bad happening. 
• She also mentioned that when a person is stressed they release a hormone called Oxytocin which she said makes you social. Apparently when a person is stressed they need human interaction - which feels to them like a hug and calms them down. 
• She said to look at stress in a positive way: for example, when the heart pounds, thinking of it as getting more oxygen to the brain, and when the body temperature is raised, thinking of it as gaining courage. 

I really liked this talk and hearing her scientific explanation about stress. To view this talk click here.

How I Felt About Stress

Many years ago, one of my children talked about stress at home-having learned about it at school. I considered my life and couldn't identify any stress-if someone asked me about my stress, I would have said that I had none.

Stresses in My Life

Before getting MS I didn't consider myself stressed but as I look back to that time here are the stresses I see: 

1. I served my family no matter how I felt.
2. I wanted to do everything perfectly.
3. I was the Young Women's President at church; and prepared to do that calling at least twice a week. 
4. I worked a full-time job in Corporate America (where I dealt with many personalities). 
5. I had my own business that I did in my spare time. 
6. I did my visiting teaching every month, and visited at least three women. 
7. I cleaned my house. 
8. I cooked every day. 

I believe people are resilient and can handle a lot of pressure. Life hands out pressure and people don't want to deal with it, but they do because they tackle what has to be done. 

After getting MS I dealt with these different stresses:

1. I didn't know what was happening to me and felt scared that I might die. 
2. I had "moments" (where I froze for 5 or 6 seconds) and my words slurred.
3. I couldn't drive for seven months. 
4. I had to quit working. 
5. I got released from being Young Women's President. 
6. My entire body, especially my hands, got weak.
7. I could no longer sing or play the piano.
8. I could no longer write. 
9. I could no longer type fast. 
10. Some people stopped caring about me face-to-face and only cared about me from a distance.
11. I learned the truth about a few things that hurt my heart.
12. My disease progressed and caused me to walk slowly, speak differently, and stop driving permanently.
13. Many more things.

The Good Side of Stress

When looking at the stresses in my life it would be sad if they encompassed the whole story, but they didn't because many blessings happen in my life, too. When I consider my stresses and blessings, the blessings win. (I'm very grateful that Heavenly Father blesses me with things that help me deal with my disease.) 

A Recommendation

The TED talk about stress made me think about many things. Consider listening to it, it's only 15 minutes long.

Does Every Cloud Have a Silver Lining?

My Challenge

It's taken me five years to get through the "this sucks" phase of dealing with life with MS. I've accepted my reality (that I have MS) because my life with MS feels more normal than my life without MS. Don't get me wrong, from time to time I still recall what I used to do, the difference is that now I realize "it is what it is" and don't get bummed.

MS threw me for a loop. My life did not go in the direction I thought it would. But here's the good thing - I didn't get defeated! I didn't let the crummy disease take over my will and my mindset and make me an eternally bitter person. My challenge caused me to think negatively for a while but not permanently. (I needed some time to figure out, "What do I do now?") Something big happened to me that turned my life upside down, and it took me a while to re-discover myself. But a bad situation also caused me to discover many good things about myself - including some things that I wouldn't acknowledge.

Thoughts on Challenges

Hard things happen to everyone. The key is that when I don't get defeated but instead learn from the hard thing, I end up knowing so much more than just knowing that I face something hard. 

How I Look at Life

I'm an optimist who would rather focus on blue sky and sunshine than on clouds. I love life, and realize that I can work on developing qualities and skills even when I have a challenge. I'm like water, if I can find a way to do it I will.

What is the Focus?

No longer do I feel like lamenting - thank you for listening to me. Now, I want to focus on the silver linings; the good that comes from facing hard things. To answer my question, does every cloud have a silver lining? Yes.

How I Had Courage Instead of Fear

My body reminded me again that it's sick. A few days ago I went to bed and every time I sat up I felt really dizzy. I thought that maybe it would stop when closing my eyes but that just made it worse. I laid in the dark and felt very woozy. For the next few days the dizziness was bearable and even forgotten in the daylight. Then recently, while sitting in my office, a wave of dizziness washed over me, followed by me feeling like I was on a roller coaster as stationary things on my desk seemed to spin, followed by me feeling really hot, followed by me feeling sick. I sat in my downstairs chair and thought about how I hadn't felt like that since initially getting sick five years ago.

I felt fine while sitting in my chair, but every time I moved the dizziness came back. Per helped me walk from my chair to the stairs so that I wouldn't fall. (I'm sure he felt worried but he put on a brave face for me.) I awoke in the middle of the night and when I sat up the dizziness hit me. I bumped into the door when walking to the bathroom (which I'm sure awoke Per) and felt sad when getting back into bed.

I laid there in the dark feeling scared. I didn't know for how long the dizziness would last - maybe a short time but maybe forever! Tears welled up in my eyes and I felt sad. After a little while of feeling terrible I thought No! I'm not gonna lay here and feel sad when I don't know what will happen. God knows my fate and I give my life to him. Think good things. I thought of my favorite story about how trials are like clouds but there is sunshine and clear sky above the clouds. I thought about good things and the sad feeling went away. 

Sad things happen to me but I won't dwell on them - it is what it is. What am I gonna do? Live my life, that's what! I refuse to give in to defeat. I'd rather have courage than fear. The sadness persists until I choose not to be sad and until I think happy things that change my attitude. (Five years ago I would have allowed the sad thoughts and bad feelings to overcome my mood.) Being sick isn't fun but - as crazy as it sounds - my trial has given me better self-esteem and correct thinking. Maybe it's a silly thing to say but I'm grateful for my trial; I'm an improved person. I step back and remember my goal (to have eternal life) and every challenge I face is worth it if it gets me closer to what I want. That night, I felt scared about having a new symptom but not for very long.

Horrible and Hilarious

Since I've been sick I have not been able to hold my bladder. I used to pride myself in the fact that I could drink more than one Diet Coke without having to use the ladies room. Sometimes I went an entire work day without visiting the latrine. Now when I have one Diet Coke I have to excuse myself.

Why is this subject taboo? We don't discuss body functions because they're gross and yet we all use bathrooms. When someone breaks wind or pee's their pants...it's funny. We all laugh, now we just do so in private.

I'm giving you permission to laugh at this story. I know you're not laughing at me but at the funny events. It's horrible but when you think about it but it's also hilarious.

Earlier in the evening I told Per that I had just one speed. In the past, sometimes I'd forget and think I'll hurry and do that. Then I'd try and fail. I told him that I could only go one speed - slow. I explained how it frustrated me for years because I had become used to doing things fast. I said how only time had helped me to cope with my "new normal."

Later that evening Per and I watched my favorite show (The Big Bang Theory). Several times he said that I reminded him of the main character and that I acted just like him. After the show, I stood up to go to bed. I asked Per to save everything from dinner because I had really enjoyed it. He said "OK Sheldon." (Sheldon is the main character’s name.) His comment made me stand there and laugh. I couldn't hold my bladder as I laughed or as I walked upstairs to the bathroom.

In the bathroom, I partially disrobed. I thought I'd leave the room and go to my bedroom before anyone noticed. As I entered the hallway, Per glanced at my face before walking into the kitchen. I walked down the hallway and had almost reached the stairs leading to my room when Andrew appeared from the basement.  Instead of going to my room I diverted into the office. I hoped Andrew didn't see me as I closed the door, turned on the light and sat down in a chair.

I heard Per tell Andrew to get something in the basement. After Andrew went downstairs Per opened the office door and said "hurry and go upstairs while he's gone." I looked at him as if to say "I can't hurry." We stared at each other then stood there laughing. Andrew came upstairs again,  he and Per went into the kitchen, and once again I closed the office door and sat down.

Andrew went downstairs for the final time and Per came into the office to tell me I could safely go to my room. He said "take as much time as you need." He offered to help me then, after doing a double-take, said "are you naked?!"

I felt overwhelmed by everything that had just happened. I felt angry that I couldn't control my bladder. I had laughed so hard with Per that when he asked me the question I started laughing again...then crying. I asked him to bring me some new clothes so I could walk out of the office feeling decent. He brought to me my pajamas and I dressed in the office. Then, he helped me walk upstairs to my room. I kept chuckling and he said "don't laugh until you get up there!"

What Was Once Done Out Of Goodness Has Stopped

After I awoke, I rolled to my side and looked at my clean clothes on the floor. I wish I could hang them up but going from the bedroom to the closet and reaching to hang up each article of clothing is hard. A person who isn't sick wouldn't consider it a big deal to walk 30 steps to the closet while carrying their clothes, and then hang them up. I used to think of that as a little thing among the many things I had to do.

In just my room this is what I did: Opened the curtains daily and opened the blinds to let light in. Made my bed. Kept the floor clutter free and vacuumed. Maintained the clutter and put or threw things away when necessary. Wiped dust off the furniture, walls and lamp shapes as needed. Emptied the trash cans when they filled up. Picked up stuff on Per's side of the room. Washed the bathroom counter and sinks when they got dirty. Cleaned the toilet and shower. Vacuumed the bathroom floor.

Now, it good when I do one thing. It takes effort to walk even a few feet. My head feels dizzy when I stand. I don't have the balance to carry things and could fall. Reaching makes me feel tired. Bending over causes even more dizziness. My fine motor skills are clunky, for example: compare an adult and a child buttering bread and think of me as the child.

As I walk through my house, that I used to keep clean, I see all the things that need to be done. I think pick your battles and decide to lower my expectations.

I used to maintain my home and cook most of our meals. I wanted to do it. I still do, but I can't. It's crappy to realize I'll have to pay to have those things done but if I want them done I'd better get out my money. Non-sick people wouldn't dream of paying for a service they could do themselves. 

A person never knows when they will go from non-sick to sick. I pity the sick person who stays sick because people will help them for a while but then...they will stop. If the sick person wants a thing done, they will either have to pay for it or realize that it won't be. If something is paid for, the idea is sad because what is paid for was once done happily and for free.

I am grateful for my illness because it has taught me many things. Nevertheless, I wish I weren't sick and could do things myself. I'm the kind of person who likes to be in charge of my own destiny. I don't like to be dependent upon others. I was independent for years. Now I'm not. I remember when I could do things. 

I imagine this is how an old person feels. I'm young (43) but I feel like my illness has caused me to age 40 years. I won't allow myself to get depressed but I could be if I went there. I feel frustrated that people once helped me and now they don't. They don't do what I need when I need it most. I'm sad that I served people in my church but they won't serve me back. I gave everything I had to people but they won't give it back to me.

I want to scream "I'm a person with feelings" because I want certain people to acknowledge me. I want them to embrace me and be charitable because that's what they preach a person should be. I want them to do what they say otherwise I feel like they are temporary and fake. I want them to put their money where their mouth is and practice what they preach.

The church's policies are implemented based upon interpretation. No one is perfect except God and he doesn't live here. My church is run by imperfect people who I thought tried to do their best, and some do, but some don't. The ones that don't say helpful things, instead make people feel guilty or they offend people by their unkind acts and words. I can see why some people get offended and leave the church - because while the principles are perfect the people aren't.

A person thinks the healthcare system is fine - until they have a need and don't receive the care they expect. The same is true for my church. It's fine as long as a person is well. When that person has an ongoing need that doesn't get helped it causes them to feel confused, then hurt, then to want to broadcast the injustice to the world.

How will a problem ever be fixed when the person who discovers it is cast to the side and the problem is swept under the rug? The problem has to be faced otherwise it will remain a problem. 

My Situation Now

Even though I'm disabled, I'm only 42 and that's young! I've learned so many things and have changed (I think for the better) in so many ways. I have the rest of my life to live with correct thinking. That's way longer than I lived with incorrect thinking.

I may move slower and look worse but I have no pain! It's a matter of learning to live with my limitations and carry on with life. Yes, I need help but I'm not dead! I'm alive! I'm here! My reality is something that I need to accept.

My situation is something to be happy not sad about.

Be of Good Cheer

It's hard to "be of good cheer" when you have little or no hope.

I went to a doctor last year who said to me "there's nothing I can do." She said no medicine existed for the kind of MS I had. Then I never saw her again. She didn't ask me to schedule a follow-up appointment with her and I felt like she didn't care. For ten months I lived in a constant state a limbo. I called it that because I never knew if that day would be my last. I thought what's the use with my life, I'm just gonna die! I never wanted to kill myself but I had no hope for my future happiness.

Last month as I drove and listened to the radio (which I never do, because I hate commercials, I only listened to the radio because I wanted to listen to something and didn't know how to make the satellite radio work) a commercial came that said something like "If you have MS you might qualify for our clinical trial..." I thought oh my gosh! and turned up the volume to hear who would say this. I went directly home and looked the company up on the internet. I felt shocked to realize a medical group existed in the town next to mine that focused on treating people with MS! I wondered how I had never heard of them. I also wondered why none of my previous doctors had mentioned this group. I thought I've had MS for two years and could have used their help!

I knew I liked them when I watched their videos. I scheduled an appointment and went there in March. I had a barage of tests done including telling them my history, having three MRI's (brain, neck, and spine,) having a neurological evaluation, having a sleep study (including spending the night), having an eye study, and giving blood. I just went there again yesterday for a follow-up appointment and felt disappointed when I learned that my previous doctors hadn't sent them my records. I could feel my heart swell when I learned that my MRI's showed very few lesions in my brain. Furthermore, they showed no lesions on my neck or spine. The doctor said that my neurological eval, sleep and eye study were all fine. He said that the thing they checked for in my blood came back negative (which is good!) He only didn't give me a diagnosis because he wanted to wait until he had learned my history and had seen all of my MRI's.

My first doctor said he couldn't help me. My second doctor had a terrible bedside manner. He also indicated that I had a bad attitude. My third doctor forgot about me. This is my fourth doctor, let's hope it's my last!

The nurse gave me hope when he said he wasn't sure that I had the rare form of MS (PPMS.) He said that since I'd had symptoms that went away, it sounded like an attack. People who have PPMS don't have attacks. He said he wanted to review my previous tests and MRI's to make sure I had received the correct diagnosis.

I think a person's level of happiness is dependent upon the level of hope they have.

The Book I Received

I completed an online survey for TOFW and they said they would send me a free book in exchange for my time and thoughts. I picked a book from the three they offered. Today I opened a package from them and inside was a note saying that because of an inventory error they were sending me another book instead. This new book is a memoir by Paul Cardall called Before My Heart Stops. The cover also says "I was born with half a heart. God made up the difference." I've only read a few pages but look forward to reading the rest.

 

I was thinking about how he and Kris Belcher have such a spiritual outlook to their trials. It's been two years for me and I'm still trying to get a grip on mine. I was starting to get down on myself then a couple of things occurred to me in the blink of an eye:

1) They have struggled with their trials all their lives. I got MS out of the blue and it turned my life upside down.

2) They were born to good parents and raised to have the gospel in their lives. My dad was a non-church going Catholic who joined the church for my mom and then went inactive. I also had turmoil in my life growing up and was raised in the church by a single mom.

3) They've both been on missions and have a deep understanding of the gospel. I think I have a deep understanding of the gospel but I've never been on a mission. I don't think about the atonement first, usually first, I have a pity-party for myself.

Certain scriptures come to my mind or a song goes through my head that relates to an experience I'm having and it gives me a deeper understanding of the gospel than I had before. Also, certain experiences make it easier for me to handle this trial gracefully - but I'm no Paul Cardall or Kris Belcher. The important thing is to not compare myself to them. I'm sure my trial has a positive impact on someone and I'm grateful to help them in some small way.

MRI and Me

The MRI machine is two powerful magnets with a hole in the middle where they slide you in on a table head first to get scanned. The hole isn't very big and your nose is inches away from the ceiling when they do the scan. It's very loud and the scan takes at least 30 minutes.

I went to KU on Monday last week to have an MRI of my head, neck and spine. To do the neck and spine the technician moves the table you're on farther into the machine. I couldn't breathe or move my arms and felt like a sardine so I said I didn't want to do it.

On Friday I had an "open MRI" at Olathe Medical Center. With an open MRI, the magnets are turned sideways and you don't go in a little hole. Instead, when you're on the table, they slide you between the two magnets and it's more open. My arms weren't constricted and I could breathe so it was no problem. It was still loud and my head was next to the ceiling but I just closed my eyes and told myself "I can do this."

My doctor said people with PPMS have more lesions in their neck, and since she wants to see if her theory is true I had to have an MRI. I go to see her on July 1st to find out the results and until then I will be patient.

I will also remember to ask for an open MRI if I have to do it again in the future.

My Strengths

I am:

Patient - I've learned patience through sitting and waiting to find out was was wrong with me.

Loving - I have the capacity to love people.

Obedient - I want to do what is right. One time I was praying and the spirit whispered to me that I am obedient person. I've always known that and I was glad to hear it.

Believing in God and Jesus Christ - I believe in their words. I love the scriptures. I try to emulate what they say.

Spiritual - I love spiritual things and see life spiritually more than temporally. I see eternity not just this life.

Accepting - I believe everyone has their own pathway back to God. What's the rush? I believe in people's freedom and their right to choose what they want. God accepts me the way I am and he encourages me. He leads and guides me and doesn't give up on me. I appreciate that.

Funny - I have a sense of humor. I like jokes that don't make fun of others. I like to make my family and friends laugh.

I think it's important to remember my strengths.

My New Doctor

I have a new doctor - her name is Dr. Lynch. She works at KU and
see's only MS patients. I thought she would care more about me than my current doctor and I think I am right.

I went to see her yesterday afternoon and she was very thorough in her testing. One of the things I like about her is that she listens to me. I have been telling my current doctor since October last year that I thought I was getting worse. It started with subtle things that I noticed and progressed from there. He was sure it was all in my head and said I needed a better attitude. He said I have RRMS (relapsing remitting MS) and that's it...no ifs, ands, or buts about it. That's what he diagnosed me as having and it's what most people have. They get an 'attack' but then it goes away (into remission) for a period of time before coming back. Sometimes it can go away for years and you'd never know the person had MS unless they told you. Anyway...he would cut me off when I said things and I felt stupid when I saw him. I thought, if I have a cronic illness am I not supposed to like my doctor and not feel stupid when I talk to him? I thought, I'm not going to tolerate this, so I made an appointment to see Doctor Lynch. The earliest day I could get an appointment was three months away in April but I made the appointment and looked forward to it with anticipation.

She reviewed my MRIs and records from Dr. Arkin and said it was peculiar. She said I'm not the normal MS patient because my brain only shows lesions in the brain stem. She said my balance is worse than it should be for a person my age and then she said she thinks I might have PPMS (primary progressive MS) because my symptoms have just gotten worse over time and I have never gone into remission. She thinks I should get an MRI of my neck because usually people with PPMS have more lesions in their neck than their brain.

I was relieved to hear her mention PPMS because my other doctor would never entertain the idea but I have felt more like I have PPMS than RRMS. There is no treatment nor medication for PPMS and it is more rare. Only about 10% of people with MS have PPMS. She did say however that sterhoids might help alleviate my symptoms for a time. I'm going to the hospital tomorrow for a sterhoid treatment and to have her monitor me. She was surprised that I have never had sterhoids...I have to admit I am surprised myself since that's usually the first treatment a person has. She said sometimes the sterhoids make a persons blood sugar go high and if that's the case, she will keep me in the hospital for five days, to receive all the sterhoids, instead of just one day. She said people with PPMS usually do well with sterhoids for about three weeks, then it starts to wear off and they have to get a treatment about once a month.

She doesn't think Tysabri will work for me since it's more helpful for people with RRMS. I am relieved to hear this because I really don't want to take a chance in getting that very dangerous brain disease (PML) which could be a side-affect from taking the medication.

Why am I writing all this in my blog? 1)I don't want to explain it to everyone who cares about me. I can simply say "read my blog." 2)I am trying to acknowlege my new self and therefore am posting this to the world 3)For some reason, I feel better writing it all down.

I don't know how quickly this is going to progress but I feel like I need to have a good attitude. I've heard attitude makes all the difference in whether or not a person with a chronic disease does well, and I thought I should have a good attitude too. Not only will a good attitude help me but I think it will also bring comfort to my family. I plan on living a good happy life and I want everyone to know that. I am content.

I remember what a friend said to me one time in church. I said to her one day when I was feeling sorry for myself, I'm fatal. She looked at me and said "honey, we're all fatal" that makes me laugh because it's true! We're all fatal, so why not enjoy life now. I smile as I type this and look forward to enjoying my life.

Trust, Optimism and Carts

I decided to ride the cart the last time I went going grocery shopping. It started at Sam's Club when I knew that once I walked to the back of the store and again to the front I would be wiped out. So, I decided to ride the cart. It was so great! I was able to get everything on my list, the lady who checked me out was really nice and helpful, a guy helped me load everything in my car, and I wasn't wiped out in the end!

Last night I went shopping at another grocery store with a friend. I felt kind of self-conscious riding the "dumb" cart, but I knew I wouldn't be able to walk the store and feel good, so I caved. The cart died in the dairy section, and I'm glad my friend was with me because we just loaded all my stuff in her cart and walked to the front of the store to check out. She even ran to get some bananas for me -which were at the other end of the store!

When we got back to my house, we sat in the car and talked for a few minutes. One of the things I like about my friend is her optimism. She sees the best in people and situations. I really like that about her. For me, I think it comes down to trust. When someone says something nice, I don't automatically believe it - I don't want to get fooled. "She's just saying that to be nice" "She isn't really that nice", I think. I don't trust their motives and I don't trust myself.

I decided to believe it today, and to see the best in others and situations. I decided to trust.

I think about my life before MS and I'm grateful for these lessons now. If I hadn't gotten sick, I would still think like that. I would have those assumptions, and never look at them. I've had to do the hard thing and look at my beliefs. Even though it's hard to acknowledge my stinkin' thinkin', it's worth it because I think it makes me a better person.

No New Lesions

I went to the Dr. today and he changed my medication from Copaxone to Tysabri, but...I have to be off of Copaxone for three months before I can switch to Tysabri. Yay, no more daily injections.

According to the MRI done in December, I have no new lesions on my brain, so I guess I'm not gonna die like I thought. He said I have a bad attitude. Well, he didn't actually say "you have a bad attitude" but that's what it comes down to...stinkin' thinkin'.

I need to realize that anything I've had for over six months is NOT going to get better. That's just the way it is. So this means basically good-bye to everything I did well "before" that I can no longer do. I need to embrace my "new self" and let the "old self" go. It's hard to do. It's hard to not get down on myself, or apologize for myself. It's hard to find value in myself. But I know that when I do, I'll be able to look at the future as bright.

My friend Donna said something to me today that really stuck. She said "one of your strengths is that you were already a very positive person and I think that has really helped you in dealing with this. Can you imagine if you were negative before what you'd be like now?" She's right and I appreciate that. I do feel that my positive attitude has helped me even though I may have some stinkin' thinkin' now. I know that it doesn't feel good to be negative, so I would rather be positive even though reality sucks a big fat hairy toe.

Realizing My Strengths

I am reading a book called MS and Your Feelings: Handling the Ups and Downs of Multiple Sclerosis by Allison Shadday. She is a therapist who also has MS. It has been good to identify my feelings. I feel more empowered.

I really like the section on Self-Esteem where, among other things, she talks about quieting your inner critic, realizing your strengths and passions, and giving of yourself.

Quieting your inner critic is not giving in to negative self-talk. I didn't realize that by apologizing for myself, and comparing my current abilities to what I "used" to be able to do, I was undermining who I am right now. By accepting who I am right now and not comparing myself to myself without MS I feel good and know that I have good things to offer.

I've known for a while that I relate well to people and I am a good listener. I have felt like I could be with people all day and it would be very fulfilling. I count that as a strength. I realize that I could volunteer to spend time with people and be their friend.

I also realize that I don't have to do big things to find joy. Joy can be found in little things as well. For example I can find joy in finding ways to do things so I'm not so tired, or I can find joy in enjoying a piece of music, or in seeing beauty in something.

Sometimes I get so busy that I forget to find joy in the little things. In retrospect, I wish I could enjoy them but I'm just to busy and don't take the time. Also, I feel better in finding joy in big things. (Somehow, the little things get diminished, like they aren't as good as the big things.)

I am glad that I had to slow down so I could feel good about the "little" things and enjoy life going on around me. I am glad that I don't need to beat myself up for slowing down and saying "I should do more."

Life is Good!

I read an excellent book yesterday called "Consider the Butterfly" by Carol Lynn Pearson. I remember reading her poems on the back of the Ensign in 7th grade, and my mom had her book "Beginnings" which was a collection of her poems. I came across this book (the butterfly one) years ago and it was no coincidence! It is about Syncronicity, the subtititle of the book says "transforming your life through meaningful coincidence" It's little stories of her experiences where she noticed coincidences in her life - very touching.

I gave the book away a few years ago to a young woman who I thought would really love it, but ever since then I've missed having a copy of my own. So I ordered one and I read the whole thing yesterday. Her words really touched me. It was like one those moments sitting in a big fluffy chair with a blanket wrapped around me and sighing - ahhhhhh - it felt so good.

I was looking on her website this morning because I wanted to get a copy of the book for my mom, I think she would really like it. As I was browsing her website, I clicked on the tab that said "telephone consultation" and read what it had to say. At the bottom there were three comments from people who really benefitted from talking to her. I thought-I don't feel like I need to have counseling, I don't feel like I need to talk to someone. My cup is full. I'm okay.

That was so huge for me! I started thinking how I've experienced healing of different things over the last 5 years, and how happy I am today. I don't need counseling, I've found what works for me and I've drawn closer to God, who is my biggest supporter! I just really appreciated realizing that.

One of my favorite quotes is "when the student is ready, the teacher appears" Isn't that so true? When we are ready to progress, somehow the thing we need appears before us. I have been a student and my teacher has appered several times in various ways. One of my teachers was this book. It reminded me of things I know are true. 1) everyone wants to be acknowledged. Once I was lonely and wanted to be heard. I'll never forget the day that I saw on my husband's face that he was really hearing me and it felt like we were meeting again for the very first time. It was healing. A space was created for the two of us to grow together.

2) the true voice speaks love. There are so many voices to listen to and I listened to negative ones for a long time. I remember the first time I prayed and really felt God's presence wrapped around me like a warm blanket. I felt so loved. I want to pay that forward in the way I speak to others. I learned once that there are two forms of honesty - negative and positive. There is an opposite to everything. It is up to me to speak love. Love creates. I want to create, not destroy.

Isn't that great?! I'm grateful for that book and the things that I learned. I'm okay, and it feels good!

It's All Perspective

So, Per and I were talking about my blog entry last night. He's so optimistic, I really appreciate his viewpoint. He said (after reading) "yeah, but you've had so many experiences and met so many people" He said the opposite happened to him, he grew up with the same people all his life, then when he moved away when he got older, he moved around and didn't know anyone. It's all perspective.

It's true. Life is how you look at it and after talking with him...I didn't feel like my childhood was pathetic because we moved so much...I saw it in a different light. How many people I've met, and experiences I've had. I have a lot of stories. So I'm not like the people on FaceBook. I wasn't like them then either, and that's okay. I wouldn't change it if I could do it all over again, because then I wouldn't have those life experiences in my memory.

Thanks, Per, for the reality check.

Mood Stages

So I've been dealing with MS for 7 months now-known what was wrong with me for 4 months. And I've noticed my moods have gone in stages. When I didn't know what was wrong with me, I was very patient. I actually surprised myself by being calm and patient...no hysteria. no why is this happening to me? no pity-party. I just waited patiently for the doctors to tell me what was wrong with me. During those 3 months, I did a lot of thinking.

I remember one day I was lying on my bed feeling kind of scared and a thought came to me...it could be worse. I started thinking about all the ways in which it could be worse. 1) I have problems with my eyesight but at least I don't have to face this trial in darkness. 2) I have problems walking but at least I "can" walk. As I thought about those things, something happened, I started to feel very grateful. Grateful that it wasn't worse.

Shortly after that I was sitting at the piano. (I've loved the piano since I could play it. I love to sing and play, it's like therapy to me...and sometimes a prayer. I have often played and sung for hours and my heart has swelled at the music. It clears my head, it's a thinking time for me, I can escape in the music and think. (I love it.) Here's my trial...my hands, especially the right hand, are weak. I can't hold my hands on the keys. I try to play, but I can't. As for my voice, I have no support from the diaphragm...I can't sing. The two things I love in all this world I can no longer do. As I sat there at the piano that day thinking about that, a strange thing happened, I was grateful. Grateful for the 20+ years I had to play and sing. Grateful that God have given me that time to spend with him. I knew that even if I never played or sang again in this lifetime, that those things would be restored to me in heaven. In eternity I would have the opportunity once again to play and sing and it gave me comfort knowing that. It made it okay.

At some point I realized that we become attached to our lives and to others and that is why we are afraid of death. We don't want to lose what we are used to or not have the people in our life that we love. But I realized that life doesn't end...it is eternal. We keep living even if it's not in "this" life...and the things I call "important" stand out to me. Family relationships, friends, being pure and clean to live in the presence of God. Those are things I can work on even in the midst of my trials.

It's been 7 months and my trial goes on. I've been taking Copaxone since October 1st and it has made such a difference. Within 2 weeks I had more control of my hands to the point that I could actually type. I could walk without feeling like I was twisting around...and even without assistance! I could walk on my own. I could talk better even though I still had "moments." (At least I wasn't avoiding talking to people. I talked on the phone with my sister and my friends and it meant so much to me.) I can type and sit at the computer now -  I have access to the outside world! There are a lot of things I "can" do and I'm glad that it's not worse.

I was thinking this morning what a bummer it is that I am not an early riser any more. I used to get up at 5:30 or 6:00am and read my scriptures for an hour or two, and now it's a miracle that I rise at 6:45 to make a shake for Andrew and say good-bye to him as he goes off to school. For the next hour I am waking up. I thought about writing a blog this morning and kind of felt like having a pity-party for myself because of all the things I can no longer do, or at least can't do as well in my mind. But as I sit here writing this blog, it occurs to me that there are a lot of things I 'can' do. I can either give in to pity and self-defeat and become a negative and bitter person, or I can be positive and see all the good things around me. I think I'll take #2 even though it takes more will-power. I know I'll feel better if I go with #2.

A person never knows what life is going to deal them. One day they could be going along thinking they're in control...eating a certain diet, exercising, doing the grind, in the comfort zone, and all of a sudden everything is shaken up. That's what happened to me. The mask of my life was removed and my life was exposed for everyone to see. But what I noticed was that people were nice they wanted to be helpful. Most people care - they don't mock me but are accepting. I'm still trying to get used to that. I want to hide, I want everyone to "think" I have it all under control - that my life is together. But I'm all exposed and vulnerable and everyone can see it. It's like I have no more "pride" because it's all out there for everyone to see. But I've realized that it's a good thing because I'm real. I'm not pretending, not hiding. What you see is what you get.

I wrote this in my journal the other day:
I have even turned away from God to some degree in not acknowledging his hand in all things. I've been trying to be brave and fine, and handle trials on my own and in that process, I've shut him out. After I handle my trial, then I'll turn to him. But here's what I've realized.

Being brave is like the outer shell of a crab, it's what I want the world to see, that I'm fine, I'm tough, I can handle my problems. But the Lord wants me to put off the natural man to put off that outer shell. When a crab takes off its shell, its exposed, vulnerable, just a crab. Nothing to hide. The Lord wants me to come to him with no shell. He wants me to invite him in so he can make my weak things become strong, so he can succor me. If I have my outer shell on, I cannot let him in. Taking off the shell, or putting off the natural man, is humbling myself and being submissive. It is coming to him and letting him in.

I like that. I want to walk through my life with Heavenly Father. I want him to be with me and to strengthen me. My trials may not be taken away, but he can make the load seem lighter. It gives me a lot of hope. I think the mood stage I'm in right now is a battle of my will. I will not give in to pity. I will not give in to negativity. I will put my trust in God and he will support me. For that I am grateful.