Perception is so strange. I remember on my 30th birthday, just days after finding out I was pregnant with McKinley, I felt old. 30 was such a big number coming from my 20's. In the past 7 years so much of my life has changed. Changes for the good and for the bad. This is my 2nd birthday without hearing my Dad say 'happy birthday'. This is my 37th birthday with my Mom, my grandma and other loved ones.
This is my first birthday with MS. I probably had MS when I was 36, maybe even years before, but this year I know I have it.
I have a new appreciation and perception on age. 37 doesn't seem so old anymore. I wont mention my thoughts on 40, but for now 7 years after I thought 30 was old, I've come to appreciate the good things that come with age. I have a wonderful family, terrific friends, great job, and a long and hopeful life yet.
Here's to a happy and healthy year!!
Sunday, May 29, 2011
Monday, May 23, 2011
Prayers
"The greatest tragedy of life is not unanswered prayer, but unoffered prayer."
I don't go to church, but I have faith and I believe. But sometimes I forget to pray. I don't forget to get upset when things don't work out like I had planned, but often forget to pray.
Im offering up some prayers:
I pray that my 17 year old will be kept safe while he struggles in life.
I pray that Nuckter has the strength and support he needs to get through that struggle.
I pray that Nuckter has the strength and support he needs to get through that struggle.
I now truly understand the meaning of the word empathy. Last night after anxiously waiting 3 hours for my son to come home I had to call his Dad. He was out of town and we arranged for Austin to stay with us for the night. Austin had other plans. He lied to both of us, he didnt answer his phone or texts and when his Dad did finally get a hold of him he continued the lies saying he was on his way. Finally my ex-husband drove home. As he sat in his driveway watching Austins girlfriend leave and 5 other friends in his house drink his liquor he phoned me.
I was relieved to hear that my on was safe, but disappointed again at his blatant disregard for rules and lack of consideration or respect. I was also filled with empathy. I listened on the phone as my ex-husband was in tears stating he was a failure as a parent.
Empathy is defined as: Identification with and understanding of another's situation, feelings, and motives
I identified and understood the situation as I have lived those same situations. I identified and understood the feelings, feelings of failure, the overwhelming fear that things will not change. I identified and understood the motives. We both love this child of ours and want him to live a good life.
I identified and understood the situation as I have lived those same situations. I identified and understood the feelings, feelings of failure, the overwhelming fear that things will not change. I identified and understood the motives. We both love this child of ours and want him to live a good life.
I will continue to have empathy, provide support and pray.
Road Trip
I was able to get in on a cancellation to the MS Clinic in Saskatoon.
I went with my MRI films and a list of questions in hopes of gaining more understanding and knowledge about my disease. Knowledge is power right?
It was a very good appointment. I liked the doctor and the RN. I have spoken to her over the phone several times so it was nice to put a face to the wonderful woman. The Dr. also ordered a follow up MRI for me to check on the lesions. I am anxious to see the outcome of that in a few months.
Something else I didnt realize until after we had left. The three times I have been to neurologist appointments I have been subjected to a bunch of tests to check my symptoms. Bob has been there for all three of the appointments, observing each test. After the appointment he told me that it was great to see the progress I have made in comparison to the other times.
Another really pleasant surprise was the 2.5 hour drive there and back with Bob. It was nice to talk about things that sometimes get lost in our busy lives.
There was nothing but positives from this road trip. We are also both really looking forward to our next road trip. We are heading to Calgary June 1 for a little time away, visit with family and to participate in the Calgary MS Walk.
I went with my MRI films and a list of questions in hopes of gaining more understanding and knowledge about my disease. Knowledge is power right?
It was a very good appointment. I liked the doctor and the RN. I have spoken to her over the phone several times so it was nice to put a face to the wonderful woman. The Dr. also ordered a follow up MRI for me to check on the lesions. I am anxious to see the outcome of that in a few months.
Something else I didnt realize until after we had left. The three times I have been to neurologist appointments I have been subjected to a bunch of tests to check my symptoms. Bob has been there for all three of the appointments, observing each test. After the appointment he told me that it was great to see the progress I have made in comparison to the other times.
Another really pleasant surprise was the 2.5 hour drive there and back with Bob. It was nice to talk about things that sometimes get lost in our busy lives.
There was nothing but positives from this road trip. We are also both really looking forward to our next road trip. We are heading to Calgary June 1 for a little time away, visit with family and to participate in the Calgary MS Walk.
Monday, May 16, 2011
Good & Bad
My needle days are my 'good days'. The injections are right before bed, but the entire day before I inject I feel good. There is no soreness, achy muscles, sore jaw, tender red injection spot, nauseousness, or headache.
Within 20 minutes of my injection my 'bad days' start. The first symptom is the sore achy jaw and head, then in the middle of the night I get the chills and shakes. Actually standing up is a task because of the weakness. The bad continues when I wake in the morning. There is no rhyme or reason to how long the side effects last, some days I feel better by 11am, other days it lasts so long I begin to wonder if I really have the flu.
It is such a stark comparison between the good and the bad that I feel. I want to do as much as I can because I don't know how bad the bad day is going to be. I find myself watching the clock as the injection time gets closer knowing it is going to bring the bad. I get scared thinking of the stories of people who have injected for years and suffered the side effects the whole time.
Isn't it enough that I wake each morning without feeling in my right hand?
Isn't knowing there is no cure and that one day I may have my second attack enough bad in my life for now?
Within 20 minutes of my injection my 'bad days' start. The first symptom is the sore achy jaw and head, then in the middle of the night I get the chills and shakes. Actually standing up is a task because of the weakness. The bad continues when I wake in the morning. There is no rhyme or reason to how long the side effects last, some days I feel better by 11am, other days it lasts so long I begin to wonder if I really have the flu.
It is such a stark comparison between the good and the bad that I feel. I want to do as much as I can because I don't know how bad the bad day is going to be. I find myself watching the clock as the injection time gets closer knowing it is going to bring the bad. I get scared thinking of the stories of people who have injected for years and suffered the side effects the whole time.
Isn't it enough that I wake each morning without feeling in my right hand?
Isn't knowing there is no cure and that one day I may have my second attack enough bad in my life for now?
Saturday, May 14, 2011
Getting Older
Nothing ages you quicker than having your children grow up. My 2nd oldest child is 15 today. I cannot believe that she is 15.
As a family tradition the birthday person gets to pick the place to go out and eat. This year she picked Teppanyaki Restaurant. I love that she chose that place based on a birthday memory from when she turned 8. I took her and Austin there for her 8th birthday and it was their first sushi experience, plus they were able to enjoy watching the chef prepare the food on the grill right in front of us. It was one of the first times we started this tradition of picking the special place. I can still remember so much of that day and I love that she remembers too.
Because of the sweet and thoughtful girl that she is, she wanted her younger brother and sister to enjoy the same experience and she wanted to share it with them.
I am ever so excited to give her present. She has been asking about Keith Urban concert tickets and wanting to save up her money for them. When the tickets went on sale it was while I was in the middle of my diagnosis and attack and being as sweet as she was she didn't make me feel bad when we didnt get the tickets. What she doesnt know is that I did get them. She i going to be beyond excited when she sees those tickets.
I only hope that she understands just how proud I am of what a wonderful young woman she is turning into and I am thankful every day for the special bond that we have.
Happy Birthday Tay! I look forward to many wonderful years of expressing how much I love you and how proud I am of what you have become.
As a family tradition the birthday person gets to pick the place to go out and eat. This year she picked Teppanyaki Restaurant. I love that she chose that place based on a birthday memory from when she turned 8. I took her and Austin there for her 8th birthday and it was their first sushi experience, plus they were able to enjoy watching the chef prepare the food on the grill right in front of us. It was one of the first times we started this tradition of picking the special place. I can still remember so much of that day and I love that she remembers too.
Because of the sweet and thoughtful girl that she is, she wanted her younger brother and sister to enjoy the same experience and she wanted to share it with them.
I am ever so excited to give her present. She has been asking about Keith Urban concert tickets and wanting to save up her money for them. When the tickets went on sale it was while I was in the middle of my diagnosis and attack and being as sweet as she was she didn't make me feel bad when we didnt get the tickets. What she doesnt know is that I did get them. She i going to be beyond excited when she sees those tickets.
I only hope that she understands just how proud I am of what a wonderful young woman she is turning into and I am thankful every day for the special bond that we have.
Happy Birthday Tay! I look forward to many wonderful years of expressing how much I love you and how proud I am of what you have become.
Friday, May 13, 2011
Defining Me
As a Mother's Day gift I recently went to visit my Mom for the day. I brought a lunch, some flowers and a few gifts to say Happy Mother's Day. She was very pleased about the visit.
I was anxious going as it was the first time seeing her since I was diagnosed with MS.
The visit went well, she didn't get too upset or emotional, but I had a really hard time when we went out for a walk and coffee. My hometown is a small town and everyone knows everyone. During our outing it didn't matter who we ran into the conversation was the same.
"This is my daughter, she has MS". It could have been a distant relative, a former classmate, one of my Mom's neighbors.
My Mom was defining me by my disease. It was very disheartening and I realize that is not how I want to be known.
I have many ways that positively define me. I don't want MS to be the focus of who I am. That does not mean I will hide the fact I have the disease. I will always be honest to myself and to those who love me about this illness, but I will also not diminish the greatness I have in my life by leading with the "I have MS". Nor will I ever say "This is my Mom she has MS."
I wished she would have said "This is my daughter, she came down to celebrate Mother's day with me."
I have MS, MS does NOT have me.
I was anxious going as it was the first time seeing her since I was diagnosed with MS.
The visit went well, she didn't get too upset or emotional, but I had a really hard time when we went out for a walk and coffee. My hometown is a small town and everyone knows everyone. During our outing it didn't matter who we ran into the conversation was the same.
"This is my daughter, she has MS". It could have been a distant relative, a former classmate, one of my Mom's neighbors.
My Mom was defining me by my disease. It was very disheartening and I realize that is not how I want to be known.
I have many ways that positively define me. I don't want MS to be the focus of who I am. That does not mean I will hide the fact I have the disease. I will always be honest to myself and to those who love me about this illness, but I will also not diminish the greatness I have in my life by leading with the "I have MS". Nor will I ever say "This is my Mom she has MS."
I wished she would have said "This is my daughter, she came down to celebrate Mother's day with me."
I have MS, MS does NOT have me.
Tuesday, May 10, 2011
My new shoes
During one of my google searches on MS I came across this. I was saddened by the fact that I could understand many of the MS symptoms without having to put myself in these shoes to understand.
When We Say We Can't do Something Because We don't Feel Well, Put yourself in Our Shoes By Using The Examples of our Symptoms Below...
Painful Heavy Legs
Apply Tightly 20 LB ankle weights and 15 LB thigh weights then take a 1 mile walk, clean the house, go shopping and then sit down - how ya' feeling now?
Painful Feet
Put equal or unequal amounts of small pebbles in each shoe then take a walk, if we are mad at you we would prefer needles to pebbles.
Loss of Feeling in Hands and/or Arms
Put on extra thick gloves and a heavy coat then try and pick up a pencil, if successful stab yourself in the arm.
Loss of Feeling in Feet and/or Legs
Ask a doc for a shot of novocaine in both of your legs and then try and stand up and walk without looking like the town drunk. Hopefully you won't fall down.
TN (Trigeminal Neuralgia)
Take an ice pick and jam it into your ear or cheek whenever the wind blows on it, or a stray hair touches it. If you want something easier to do, get someone to punch you in the jaw preferably daily.
Uncontrollable Itching
Glue or sew small steel wool pads to the inside of your shirt, pants and undergarments wear them for an entire day.
Tingling
Stick your finger in an electrical socket - preferably wet.
Tight Banded Feeling
Put 12 inch wide belt around you and make is as tight as you can and leave it there for the entire day. How ya' breathing?
Shots
Fill one of our spare needles with saline solution, saline won't hurt you, we would love something worse but don't want to end up in jail. Give yourself a shot everytime we do our shot.
Side Effects From the Shot
Bang you head against a wall, wrap yourself in a heating pad, wrap your entire body with an ace bandage tightly then finally treat yourself to some spoiled food or drink.
Trouble Lifting Arms
Apply 20 LB wrist weights and try and reach for something on the highest shelf in your house.
Spasticity
Hook bungee cords to your rear belt loops and rear pant leg cuffs then for your arms hook bungee cords to your shirt collar and cuffs on shirt sleeves then go dancing.
Poor Hearing/Buzzing in Ears
Put a bee in each ear and then put a plug in each one...Bzzzzzzzzzzzz zzzzzz
Balance and Walking Problems
Drink 100 proof grain alcohol and then sit and spin in an office chair for 30 minutes, now get up and see what happens.
Urgently Needing to Pee
We put a .5 liter remote controlled water bag and drip tube in your pants, we point out 2 restrooms in a crowded mall, then we tell you that you have 30 seconds before we activate the water bag (by remote control) to get to a restroom. Just for spite we may make that 20 seconds without telling you.
Bizarre and Inexplicable Sensations
Place tiny spiders on your legs or arms and allow them to periodically crawl around throughout the day, heck all day would be good too.
Pins and Needles
Stab yourself repeatedly with needles all over your body or better yet....Get a very large tattoo in your most sensative area.
Dizziness (Vertigo)
Get on a gently rocking boat all day and all night and take several walks around the deck with your eyes closed.
Fatigue
Stay awake for two full days to induce incredible fatigue and then cook dinner, clean the house, walk the dog and see how you feel. Please do not compare MS fatigue to you being tired from only a few hours of sleep - it's not the same at all.
Cognitive Function (Brain Fog)
Take a liberal dose of sleeping pills but stay awake. Try and function properly and think clearly. To make it even more real without killing yourself of course, take the sleeping pills with a small sip of wine.
Bowel Problems
Take a 4 day dose of an anti-diarrhea medicine followed directly by a 3 day dose of stool softeners for a minimum of 3 weeks, at the end of 3 weeks sit down on a hard uncushioned chair and stay there till tears appeared.
Burning Feeling
Make a full pot of boiling water and then have someone fill a squirt gun with the boiling water and shoot it at yourself all day long. However, you can give us the pleasure of shooting you instead...optional of course.
Intention Tremor
Hook your body to some type of vibrating machine try and move your legs and arms.....hmmm are you feeling a little shaky? You are not allowed to use anything fun for this lesson.
Buzzing Feeling When Bending Our Heads to Our Chest (L'Hermitte' s)
Place an electrical wire on your back and run it all the way down to your feet, then pour water on it and plug it in.
Vision Problems (Optic Neuritis)
Smear vaseline on glasses and then wear them to read the newspaper.
Memory Issues
Have someone make a list of items to shop for and when you come back that person adds two things to the list and then they ask why you didn't get them. When you come back from shopping again they take the list and erase three things and ask why you bought those things.
Foot Drop
Wear one swim fin and take about a 1/2 mile walk, nothing else needs to be said for this one, you'll get it.
Depression
Take a trip to the animal shelter everyday and see all the lonely animals with no home. You get attached to one or more of the animals and when you come back the next day you come in while they are putting her/him asleep.
Fear
Dream that you have lost complete feeling in your feet and when you wake up wiggle your feet, just so happens they don't move. Think about this every night wondering whether something on your body won't work the next day when you wake up.
Swallowing
Try swallowing the hottest chili pepper you can find.
Then Finally...
After subjecting yourself to the items above, let everyone tell you that you are just under a lot of stress, it's all in your head and that some exercise and counseling is the answer.
When We Say We Can't do Something Because We don't Feel Well, Put yourself in Our Shoes By Using The Examples of our Symptoms Below...
Painful Heavy Legs
Apply Tightly 20 LB ankle weights and 15 LB thigh weights then take a 1 mile walk, clean the house, go shopping and then sit down - how ya' feeling now?
Painful Feet
Put equal or unequal amounts of small pebbles in each shoe then take a walk, if we are mad at you we would prefer needles to pebbles.
Loss of Feeling in Hands and/or Arms
Put on extra thick gloves and a heavy coat then try and pick up a pencil, if successful stab yourself in the arm.
Loss of Feeling in Feet and/or Legs
Ask a doc for a shot of novocaine in both of your legs and then try and stand up and walk without looking like the town drunk. Hopefully you won't fall down.
TN (Trigeminal Neuralgia)
Take an ice pick and jam it into your ear or cheek whenever the wind blows on it, or a stray hair touches it. If you want something easier to do, get someone to punch you in the jaw preferably daily.
Uncontrollable Itching
Glue or sew small steel wool pads to the inside of your shirt, pants and undergarments wear them for an entire day.
Tingling
Stick your finger in an electrical socket - preferably wet.
Tight Banded Feeling
Put 12 inch wide belt around you and make is as tight as you can and leave it there for the entire day. How ya' breathing?
Shots
Fill one of our spare needles with saline solution, saline won't hurt you, we would love something worse but don't want to end up in jail. Give yourself a shot everytime we do our shot.
Side Effects From the Shot
Bang you head against a wall, wrap yourself in a heating pad, wrap your entire body with an ace bandage tightly then finally treat yourself to some spoiled food or drink.
Trouble Lifting Arms
Apply 20 LB wrist weights and try and reach for something on the highest shelf in your house.
Spasticity
Hook bungee cords to your rear belt loops and rear pant leg cuffs then for your arms hook bungee cords to your shirt collar and cuffs on shirt sleeves then go dancing.
Poor Hearing/Buzzing in Ears
Put a bee in each ear and then put a plug in each one...Bzzzzzzzzzzzz zzzzzz
Balance and Walking Problems
Drink 100 proof grain alcohol and then sit and spin in an office chair for 30 minutes, now get up and see what happens.
Urgently Needing to Pee
We put a .5 liter remote controlled water bag and drip tube in your pants, we point out 2 restrooms in a crowded mall, then we tell you that you have 30 seconds before we activate the water bag (by remote control) to get to a restroom. Just for spite we may make that 20 seconds without telling you.
Bizarre and Inexplicable Sensations
Place tiny spiders on your legs or arms and allow them to periodically crawl around throughout the day, heck all day would be good too.
Pins and Needles
Stab yourself repeatedly with needles all over your body or better yet....Get a very large tattoo in your most sensative area.
Dizziness (Vertigo)
Get on a gently rocking boat all day and all night and take several walks around the deck with your eyes closed.
Fatigue
Stay awake for two full days to induce incredible fatigue and then cook dinner, clean the house, walk the dog and see how you feel. Please do not compare MS fatigue to you being tired from only a few hours of sleep - it's not the same at all.
Cognitive Function (Brain Fog)
Take a liberal dose of sleeping pills but stay awake. Try and function properly and think clearly. To make it even more real without killing yourself of course, take the sleeping pills with a small sip of wine.
Bowel Problems
Take a 4 day dose of an anti-diarrhea medicine followed directly by a 3 day dose of stool softeners for a minimum of 3 weeks, at the end of 3 weeks sit down on a hard uncushioned chair and stay there till tears appeared.
Burning Feeling
Make a full pot of boiling water and then have someone fill a squirt gun with the boiling water and shoot it at yourself all day long. However, you can give us the pleasure of shooting you instead...optional of course.
Intention Tremor
Hook your body to some type of vibrating machine try and move your legs and arms.....hmmm are you feeling a little shaky? You are not allowed to use anything fun for this lesson.
Buzzing Feeling When Bending Our Heads to Our Chest (L'Hermitte' s)
Place an electrical wire on your back and run it all the way down to your feet, then pour water on it and plug it in.
Vision Problems (Optic Neuritis)
Smear vaseline on glasses and then wear them to read the newspaper.
Memory Issues
Have someone make a list of items to shop for and when you come back that person adds two things to the list and then they ask why you didn't get them. When you come back from shopping again they take the list and erase three things and ask why you bought those things.
Foot Drop
Wear one swim fin and take about a 1/2 mile walk, nothing else needs to be said for this one, you'll get it.
Depression
Take a trip to the animal shelter everyday and see all the lonely animals with no home. You get attached to one or more of the animals and when you come back the next day you come in while they are putting her/him asleep.
Fear
Dream that you have lost complete feeling in your feet and when you wake up wiggle your feet, just so happens they don't move. Think about this every night wondering whether something on your body won't work the next day when you wake up.
Swallowing
Try swallowing the hottest chili pepper you can find.
Then Finally...
After subjecting yourself to the items above, let everyone tell you that you are just under a lot of stress, it's all in your head and that some exercise and counseling is the answer.
Monday, May 9, 2011
Show & Tell
Its been awhile since I've blogged and it's overdue. I can feel all my thoughts and feelings building but haven't expressed them.
I find just blogging and typing them out,seeing it in black and white makes things calmer for me.
This weekend was Mother's Day. I had some wonderful moments and some hard ones too. I choose to focus on the good. Here is my good:
I watched my 6 year old daughter play her original composition piece at her piano recital. And she nailed it!
I had breakfast in bed from the kids.
I was spoiled with lots of wonderfully crafted homemade gifts from daycare and school.
I had a nice coffee visit with my soon to be 15 year old.
I also had a great walk/bike ride with three of my kids to the playground, where I sat on the bench watching children that have grown up so fast right before my eyes.
The sweetest moment was my 17 year old that came for supper after work. He bought and wrapped a gift. He not only brought me a gift but he brought me a much needed hug too. He loves me and he showed me that love. He got it, it wasn't how much money you spent or how elaborate the gift was, it was that he took the time out of his life to think of me and love me.
Thank you
I find just blogging and typing them out,seeing it in black and white makes things calmer for me.
This weekend was Mother's Day. I had some wonderful moments and some hard ones too. I choose to focus on the good. Here is my good:
I watched my 6 year old daughter play her original composition piece at her piano recital. And she nailed it!
I had breakfast in bed from the kids.
I was spoiled with lots of wonderfully crafted homemade gifts from daycare and school.
I had a nice coffee visit with my soon to be 15 year old.
I also had a great walk/bike ride with three of my kids to the playground, where I sat on the bench watching children that have grown up so fast right before my eyes.
The sweetest moment was my 17 year old that came for supper after work. He bought and wrapped a gift. He not only brought me a gift but he brought me a much needed hug too. He loves me and he showed me that love. He got it, it wasn't how much money you spent or how elaborate the gift was, it was that he took the time out of his life to think of me and love me.
Thank you
Tuesday, May 3, 2011
Fellow MS'er
I have been fortunate to meet two people diagnosed with MS recently. Last night Bob had a work function where one of the women introduced herself to me and said she too was diagnosed with MS. She had two attacks several years ago and has been doing great.
I am thrilled to hear these kind of stories
The other MS patient I met was a few weeks ago through the MS Walk fundraising. He is from my home town and we have quite a few similar friends. He was diagnosed just days before me. And not only does he have the same neurologist he has the same family doctor too. Even our children share similarities.
These conversations have done alot to calm me and provide me with comfort and hope. There are probably a lot of people with MS that dont LOOK like they have MS. In 10 years I want to be one of those people.
I am thrilled to hear these kind of stories
The other MS patient I met was a few weeks ago through the MS Walk fundraising. He is from my home town and we have quite a few similar friends. He was diagnosed just days before me. And not only does he have the same neurologist he has the same family doctor too. Even our children share similarities.
These conversations have done alot to calm me and provide me with comfort and hope. There are probably a lot of people with MS that dont LOOK like they have MS. In 10 years I want to be one of those people.
Subscribe to:
Posts (Atom)