imperfect, lovable, quirky, easily distracted, hard working, patient, confused, loving, confident, tolerant, fun loving, insecure, easy going, scrappy, intelligent, spiritual, open-minded, friendly, strong, happy, bad ass, optimistic, amazing...
Monday, September 27, 2010
"There is nothing like returning to a place that remains unchanged to find the ways in which you yourself have altered." -Nelson Mandela
Not fine, not okay, not good... considering.
For the first time in 5 months, I have felt GOOD for the entire day. I had energy all day. I accomplished a lot at school. I (unexpectedly) had to tutor after school. I went to the gym and ran 2 miles. I even still had energy to go to Jaclyn's house and get caught up on Weeds. I'm not just still awake. I STILL FEEL GOOD!
Hence the title of my bog today. It has always been one of my favorite quotes, because it continually has a different meaning for me. Today it means that I can find joy in what used to be normal. A day that used to make me smile, now makes me cry. Don't worry! They're good tears- happy, thankful, humble, lessons-learned-the-hard-way, faith-sustaining tears. Life is good.
Don't take your health for granted. Live life to the fullest. Don't sit back and let life happen to you; make it happen! There are a lot more cliché's that are appropriate, but I don't want to push my luck. I know that If my eyeballs don't see the back of my eye-sockets sometimes in the nines, tomorrow might not be as great as today.
Today was a good day.
Saturday, August 14, 2010
Trey's First Day of School
Trey had his first day of Kindergarten this week. I'm super excited because he gets to come to school with me. I get to pick him up and bring him to school with me every morning. I was really nervous and excited for him the first day, but he was totally relaxed and calm. Every time I told him something he was like, "I know." He is my first nephew to go to school, so it's all pretty exciting and fun.
He loves Mrs. Ide and all of his friends. At the end of the day he is very tired and hungry. On Friday he said, "I met too many friends." I love it when I get to see him out and about campus. My class was stopped in the hall to let his class by one day and I totally disrupted his line when I stopped to ask him how his lunch was and give him a kiss. His biggest complaint this week was that he opened his own cookies at lunch time and two fell on the floor. He stepped on them because he couldn't eat them. Boys!
Two of my students pick him up from class everyday 5 minutes before the bell rings (it was a problem when I had a parent waiting outside my door to talk to me and Pat had to wait for me to get Trey so she could take a kid to the daycare vans). He loves hanging with "the big kids" and they love him. He gave all of the 5th graders a starburst on Friday and told them, "You rock! Good job, big kids."
Every morning he brings his breakfast and eats it in my class. After school, he wants to be just like Nick and Aaron and play games on the computer. I had to tell Mom to wait for 15 minutes after school gets out so that he has time to play for a minute. I love getting to spend a little bit of time with him everyday!
Changes for the Better
I did pretty well health wise too. The first day I got tired about 15 minutes before the bell rang. The second day I was good while the students were there, but was exhausted by the time I got home. Yesterday I was good all day. I even went to the movies last night with Cherish! I napped everyday, but on Thursday I took a 2 hour nap and still slept for 8 hours. Apparently 10 hours of sleep is what I need to get through the day these days.
I need to try to exercise in the mornings when I still have all of my strength, but I'm not sure what kind of exercise I should do. I am trying to build my strength back up to pre-treatment days, but I can't do boot-camp or the elliptical yet. Swimming is my favorite because it gives me a workout, but I can't fall or otherwise hurt myself. I just don't want to have chlorine in my hair everyday. I'm going to have to look into classes at the Y, I guess. I will just do what I can. If I workout at 5 am, I will have to be asleep at 9 pm. That will be a very big change for me. All of these lifestyle changes are kind of hard to handle, but they will make my quality of life so much better.
I finally got to talk to someone with MS. A parent of one of my students has had it for 7 years and she has been talking to me and answering a lot of my questions. I love it because she is able to put into words things I couldn't articulate. This is a quote from an email she sent me. "Like most MS patients, you are an over-achiever. Anyone who's been at Highland long enough knows that you go out on limbs, dream big and spend lots of extra time thinking and planning for your students. We are like that - obsessive, stressful people who can accomplish more than 5 people at once. They don't take "no" for an answer and demand more of themselves than they expect of others. A little type-casting there. Changing your mindset won't be easy. Obstacles for me have always been a challenge, not a roadblock. MS was just another obstacle at first, until I realized, there's no fooling the body, there's no pretending you don't have it, there's no "pushing through" the fatigue. It stops you. That's why one of the mottos of the MS organization is 'Stop MS from Stopping Others.' Another one is 'Keep Moving.'" She's given me advice on how to keep moving.
I am still really emotional at times. It's a part of MS that this parent and my regular doctor have warned me about. Plus, I've read a lot of articles that talk about mental health changes associated with MS. Between me, my doctors, my friends, and my bishop, I'll figure it out. My bishop gave me a much needed blessing on Wednesday. It has done wonders for me and taken off a lot of stress I felt about deciding on treatments and (seemingly) my future. Most of the time I am still very aware of what a lucky girl I am and how fabulous my support system is. I've always been pretty good at change. Most of the time I crave it. I guess I was a little too comfortable with how my life was going, because this is forcing me to make changes. The more I fight it, the harder it will be, so I guess it's time to give in. I will just keep telling myself these changes will lead to a better me.
Tuesday, July 20, 2010
The One Where I Complain and Then Go On to Talk About MS Therapy Options More In-depth Then You Ever Wanted to Know
Tuesday, July 13, 2010
I'm human again
Thursday, July 8, 2010
Day 3- I'm done.
Wednesday, July 7, 2010
Day 2
Pam was the lucky winner of taking me to get my infusion today. Besides some pesky air bubbles that elongated my hour long session, it went pretty quick and painless. I started an MS journal with all of my Dr. Apt's, meds, phone #'s, and symptoms. Pam helped me finish it up while we waited for the 1000 mg of solu-medrol to drip into my vein and continue the magic of healing the lesions on my brain.
I woke up feeling pretty good this morning. In fact, I woke up, took a shower, got dressed, and ate the yummy cheesy eggs Pam made me for breakfast (she insists she is a bed and breakfast now) without one dizzy spell. I believe the first time I felt dizzy was in the car on the way to my 9:00 A.M. appointment at the hospital. I think the numbness in my left arm has smallered (that's for you Pam) in size. I still can't walk straight. Pam seems to notice every time, but she insists no one else would notice. : ) I felt very good coming home from the hospital and Pam took me to run some errands. She kept telling me to take it easy because the medicine kicks in after awhile. She was right. One minute I was clumsy, but fine. The next minute I was exhausted, dizzy, and more uncoordinated than usual. I really wanted to get out though. The poor Robedeau kids were stuck in the house yesterday. So, I insisted that we follow the summer Robedeau tradition of Chinese food Wednesday. I was nauseous on the way to the restaurant and had some trouble walking into the restaurant, but I ended up eating a lot. I ate NO carbs. I believe I had less than 5 carbs in all today. My blood sugar made me have a headache all day yesterday. It sucked. So today I tried to be very good. my blood sugar was 140 right before lunch, as opposed to 211 yesterday and after dinner it was 214 as opposed to 264 yesterday. I just took it and it was 164 as opposed to 199 last night. Much better! It made a big difference. It's a lot easier to handle my other symptoms when I don't have a huge headache too!
After lunch I took a 4 hour nap. I got hot and tired again and just crashed. When I woke up I started shaking all over. Solu-medrol is a steroid and with 2000 mg now coursing through me, I was a little amped. That lasted for about half an hour, and then I calmed down. I'm not sure I'm going to be sleeping anytime soon though. That's another side effect I had been warned about. The gross taste in my mouth lasted until after dinner today, but I sucked on ice breaker sours all day. Yummy! I got in the pool tonight. It was really nice. The kids were playing and I just sat outside and read for awhile. Then, when I was squatting by the pool checking on Aaron, someone jumped in and splashed really big. I jumped up, got dizzy, and thought I was going to fall. It scared me and I started to cry. A little while after that, I demanded that all the kids either move to the shallow end or get out so that I could just float and relax in the deep end. Yep, weepy and grumpy is how my doctor described those side effects. *Sigh* Fun for everyone. Tomorrow Camilla is going to take me to my last infusion at 10:00 A.M. Then I just have to be careful for 4 more days not to catch anything that would require my suspended immune systems protection. I feel like I am giving my immune system a time out. I have been so good to it! I take emergen C all the time to help it out and how does it repay me? It attacks my brain. Awesome. I am no longer working on strengthening it.
As for my emotional feelings, I am SO much better today. My blood pressure was 128/79 or something like that. The two things that aggravate MS are stress and heat. I have been avoiding heat, but the 1st one was a little bit harder. Now that I pretty much know what to expect I am much better. Plus, when you are as loved as I am, and you have wonderful family and friends like I do, it's much easier facing the unknown.
I have spent most of my life feeling really alone. I'm not sure why. Intellectually I have always known I was loved, but emotionally I didn't feel it. I have received over 100 messages, comments, texts, and phone calls, plus several in person chats over the last 5 days. I think that may be enough to change my emotions on this particular subject. The problem with emotions is that they aren't always rational, but the pain they cause is very real. There is a non-profit organization called To Write Love On Her Arms that exists for three reasons. 1. To spread the message to people who suffer from depression, self-mutilation, suicidal thoughts, and addiction that they matter and are loved and that their pain is real, but so is hope. 2. To educate people on how to help their friends suffering from these conditions. Mainly through spreading love. 3. To offer resources for people to turn to. I think this is a super important group and I would love for you to check out their website I have linked to this post.
Have you ever felt alone, like no one really knew you, like you weren't good enough, hopeless, unloved, unworthy, heartbroken? There isn't anyone reading this who hasn't experienced at least one of these emotions. Again, the emotion was probably not rational, but the pain was still very real. I have been thinking about 2 of my best friends recently. All three of us are in different places in our lives. We come from very different backgrounds and each have a unique set of hang ups, talents, and ways of dealing with emotions. I would like to use the 3 of us to illustrate several different ways to spread love.
My first friend is incredibly thoughtful and organized. She keeps records of peoples birthdays, anniversaries, and other special days. If you are taking an important test in school you will get a good luck text from her. When she sees you she will ask about each of your kids, spouse, and your mom and name each one by name. If your sibling/parent/spouse has passed away, you will get a call from her asking if you want to go to lunch or just talk. She will come and cry with you. She will cry for you alone at home. She will spend hours making you a special card. She has special cards at home and at work so that she can drop it off for you whenever needed. She sees things when she's out that remind her of you and picks it up and gives it to you for no reason. You will get a birthday/Christmas present from her that is incredibly thoughtful and probably something you talked about briefly months ago. Even though she is friendly to everyone she meets, she talks easily to people, and to know her is to lover her, she considers making new friends hard for her. She makes a life-long commitment to the happiness of each friend she has. When you are doing something that she knows will make you unhappy, she tells you. When she has a problem she never complains or asks for help from her friends.
My second friend is equally amazing. She loves to host get-togethers. She is an incredible host and loves to make people feel welcome. It is not unusual for her to jump up and down, clap her hands, and shout your name when you walk in her front door. She too is very thoughtful. She is full of positive thoughts for all of her friends and lives to tell them how great and wonderful they are. When I called her on the eve of my 30th birthday and told her, "It's 7:30. I just dropped my friend off, and I'm feeling very alone." Her response was not, "Kelle, that is ridiculous! You have 100's of friends." or "I already organized a birthday party for you tomorrow. I'm hosting one for you at my house on Friday. I think that should be enough attention on you for your birthday." or, "Kelle, I have a family and responsibilities. Can I pencil you in for tomorrow?" or even, "Oh, do you want to come over or do you want me to come over?" Instead she scoffed, "Well duh! That's because Sonic has $1 sundaes after 8 and you are supposed to be over here. Hurry up! We WILL leave without you!" She is so good at ignoring the irrationality of your reasoning, the mistakes you make, and just loving the hell out of you. She can not do any of those things for herself though. Every negative or positive word you say to her goes in her head and is analyzed for weeks. She finds it difficult to open up to new people, and often feels misunderstood, but she still finds a way to add to our group constantly.
I am NOT at all organized. I am terrible at remembering any kind of dates or names. I will often forget YOUR name! I can not cry in front of people to save my life and until last year I never cried at home either. On your birthday I will have a terrible time getting you a present and you will probably end up with a gift card because I can not remember what your favorite things are unless I write them down (which sometimes I do to counteract my thoughtlessness). Not only that, but I will be late to your birthday party. I am not a good host. I hate being alone, so I work really hard to keep myself entertained. I try to keep busy everyday, so if you call me and want to do something I usually say something like, "How about lunch on Wednesday or dinner on Friday?" If you don't make plans with me right then (and I put it in my phone), I will probably forget to call you back. Every positive thing you say to me goes out of my head immediately. Every comment you make that I infer as negative will stay with me for a lifetime. If you write something nice about me I will keep in in my inbox, texts, or in a file folder I keep at school and look at it regularly. I have a very tough time with negativity and drama. I think I am probably prone to depression, but I HATE not being happy, so I get stomach aches if I am in a negative or drama filled environment. I know happiness is a choice and I work hard to make that choice.
I know what you're thinking. "Wow, who would be friends with this thoughtless girl?" I'm not completely thoughtless. I'm a nice person and I have my own talents too. Unlike both of my other friends I feel like I make friends easily. I think it comes from my love of people. My happiness in life is derived from my relationships with people. I love to make them happy and live to provide service to them. When I meet new people I can instantly see their strengths and I instantly love them. Truly... I love people instantly. Somehow, I have been blessed with the ability to communicate my love and awe of their strengths to people in a way that they can believe. When I meet you, I love you, and you know it. I love to tell strangers that I like the shirt they are wearing. I love to entertain people, as much as it embarrasses me. When you are happy, I am happy. If you are sad, I am sad. I love to make people laugh. If I see something about you that I admire, I tell you. I'm not afraid to tell you about life experiences I have had to let you know that you are not alone.
When I am sad, or even if my cheeks are just tired from smiling, people notice and seem to be very concerned. Sometimes I feel like I disappoint people if I am sad, so I don't tell a lot of people the things I am upset about. The two friends I have described above, and countless other friends, have taught me in the last year that it is okay to share with people. This blog is like a journal to me and normally I would be incredibly self-conscious about sharing it with others, but because I did I have received one of the best gifts in the world. For the first time in a very long time I don't feel unloved, hopeless, and alone. Most people are shocked that I have always felt this way because I don't show it or talk about it. The moral of this entire blog is you never know when or how someone needs to receive comfort from you. Maybe it's my smile, a thoughtful word from my first friend, or a feeling of welcome and acceptance by my second friend that will make someone's day. You never know. So, make a point of following through with your instincts. If you like something someone is wearing, tell them. If someone is important to you, tell them. If you randomly think of a friend, call them, text them, go see them. People are not meant to walk the earth alone. You have to have relationships with people to be happy. Spread the love and we can change the world.
Visit http://www.twloha.com/ and read their vision statement, be their friend on FB to get their awesome daily quotes, and spread the love.
Sorry for the extremely long post today. Apparently I will not be sleeping tonight. Good ol' drugs working away!
Tuesday, July 6, 2010
Day 1 In Pictures
7:00 A.M- My I.D. bracelet I have to keep on all week. I didn't think I was going to have to wear one because I'm being treated out-patient. It's something about wanting to play it safe and not give me the wrong medicine. Way to go Banner Baywood.
8:05 A.M.- Getting all zen with my ipod and relaxing. I was wishing the solu-medrol a speedy and fruitful journey. I believe I was wishing that airplanes in the night sky were like shooting stars. I really needed a wish right then.
10:00 A.M.- The Kelle Room! It's so pretty! I got pretty comfy. I might not ever leave.
All day- I was entertained and cuddled with to my hearts content. I had mentioned wanting broccoli and Pam made me the best chicken pot pie in the entire world filled with broccoli. It was delicious!
Twice I got really hot, very tired, my head starting hurting, and I got dizzy. Each time it lasted about an hour and I basically slept through it with the aid of back and head massages. My blood sugar was in the mid 200's all day. They warned me about that, but I was still really bummed because I didn't even eat anything fun. : ( Will finally caved to my begging and bought me candy. Pam and Mark let me have 5 recess pieces when my blood sugar dropped down to 199. Hee hee. I savored every single one of them.
Monday, July 5, 2010
Bring on the Infusions
Friday, July 2, 2010
Things I've learned in the last 24 hours
- Brain lesions can heal and the symptoms I am experiencing should go away. Yay!
- You should bring someone with you to the Dr.'s office because when you're told you probably have MS you don't remember very much of what else the Dr. says.
- Only 10% of people with MS end up disabled and in a wheelchair.
- 1/750 people have MS.
- MS is the second leading diagnosis of neurological problems in women between the ages of 25-35. The first is migraines. Women in this age bracket are the leading demographic to be diagnosed with MS. Women are 2/3 more likely to get it then men.
- One of my first reactions to an abnormal MRI was relief that I wasn't imagining this.
- MS is when the immune system, for some unknown reason, decides the mylin sheeth that protects the nerve fibers is a virus and attacks it. When it is damaged the brain has trouble sending signals to all of the parts of the body.
- When I'm thinking about something, I don't like to be alone, but I don't like to talk to anyone either.
- Lesions often have no symptoms. My symptoms are caused by the lesion in my temporal lobe, which is not my biggest or worse lesion.
- You cannot catch or spread MS.
- Every MS patient is different and the auto-immune disease varies greatly between patients.
- When the doctor says, "You should take it easy." I interpret that to mean eat chocolate peanut butter ice cream from Baskin Robbins, and chill in Pam's pool.
- I instantly developed an intense adversion to changing my routines or making a big deal out of this. In fact, I'm pretty sure I would have a meltdown if someone suggested I do.
- The little inconveniences I have been trying to ignore are all of a sudden a lot scarier when I realize they are caused by problems with my brain.
- I feel like the less I tell people, the less they will worry about me. I HATE it when people worry about me. Except I love knowing that I'm important enough to worry about.
- I have the worst time letting family and friends help me. I don't know why.
- The unknown is definitely the most scary thing in the entire world.
- Everything is going to be okay because I will still be able to love and be loved, and that is what life is all about.