The One Where I Complain and Then Go On to Talk About MS Therapy Options More In-depth Then You Ever Wanted to Know

Note: I contained myself to two paragraphs of complaining. Skip the next two paragraphs and you will miss all of the self-pity.

I think I felt better today than any other day in a month, but I am really frustrated right now. I am exhausted and have been since 6:30 pm. It's like my body decides it's done and then that's it. I have trouble walking. I can't lift or cary things. Even my purse (shut up, it's not THAT heavy) or a drink is too heavy! Plus, if I continue to do even the most basic task (ie. walk, stand, fold laundry) it gets worse really quickly and I get dizzy. Oh yeah, and I get grumpy. Pooh! I really have been taking it easy. It's just the better I feel, the more I realize how far away from normal I still am. Before it was just a shock and I guess I felt like I was sick, but usually when you're sick you get better relatively quickly.

Plus, I'm having a hard time with missing out on things. My friends went out a couple of weekends ago and I knew I couldn't go with them. They had the best time and I missed out on all of their fun stories. I wanted to go tubing tomorrow, but I can't. I was trying to help Amanda cary chairs to her new classroom today. Everyone else can cary 4 at a time. I tried, but then had to put 2 down. It's embarrassing and it makes me feel weak. I'm trying to set up my classroom, but I can't do a lot of the stuff I need too. Jarrah and Melissa have always helped me set my room up, but this year I can't do it without them. I HATE that I can't do it. Grrr! Alright, I'm done now.

I am so lucky to have so much support from my family and friends. Jarrah and Melissa have been helping me work for a week now. Today when I told Jaclyn I couldn't go tubing, she decided to stay home and come over to my house to swim in the morning instead. For awhile I was too tired to do really anything. When I play Rock Band my left hand has a hard time. Lot's of my friends have come over and played Rock Band with whoever else was here while I just sat on the couch. I think it was kind of awkward for them. They always want to help me with something. However, I really appreciated things being like they usually are, even if I can't participate. I still have way too much thinking time, but I am getting better about filling that time with other things.

Therese went with me to my neurologist appointment yesterday. She is an excellent note-taker. Plus I had questions written down for Dr. Granger and she reminded me of them when I forgot to ask. He basically said that I'm borderline and can't be diagnosed with clinical MS at this time. He said whether or not I go on a therapy will be a personal decision.

The pro's are, both kinds of therapies statistically reduce attacks by 35% a year and brain lesion activity by 75% a year. Plus, studies show that the earlier you start a therapy the slower your disability progresses. They say it also delays the clinical MS diagnosis because it delays another attack (which is good). He gave me a lot of info on the two therapies I qualify for. He said he has almost 600 patients with MS. A couple hundred are on Avonex, a couple hundred are on Copaxone, and 42 are on Trosoverin (a harsh chemo related drug which I do not qualify for). That leaves around 100 that have chosen not to have any therapy at this time. He said if I have another attack I won't have a choice. Another pro is people who are untreated have to have an MRI every 6 months. If I am on a therapy I have to have one every year for 2 years (after my next one in 3-6 months to see if these lesions have gone away), then only when I have symptoms.

The con's are, therapy means I have to give myself shots. Weird! Plus, we can't rule out that I might have that other disease that I can't pronounce (it's not whatever I said it was before, but it sounds like that, lol), which is a one time virus that attacks your brain and then goes away. I will have to ask Therese if she remembers, but I think he said 85% (it could be 80% or 90%, I can't remember) of people with lesions like mine have MS.

The two drugs work differently in your brain:

Avonex (interferon beta-1a)- Only 3 shots a week, but most people experience mild flu-like side effects. Plus, a small group of people get a severe liver problem from it, so I would have to have my liver tested regularly for a year. It is also linked with depression and sadness.

Copaxone (glatiramer acetate)- No side effects, but you have to have a shot every day.

I'm not done researching yet, but right now I think I want to start a therapy. There are several reasons. 1) Every personal story and clinical research I have read so far says the sooner you start a treatment the better. 2) My doctor said I have mild MS and a lot of the research I have done explains crazy (and painful) symptoms. My MS sucks! I am willing to give myself a shot everyday to keep the "mild" form I have. 3) I don't personally know anyone who has MS, but my Aunt Linda's best friend and Amy K.'s neighbor both do and both Linda and Amy told me they said they take a shot everyday and never feel like they have MS. Both have been symptom free for years. I will keep researching and praying about it. I still can't start a therapy until I'm done with this attack. I see my neurologist again in a month.

Dr. Granger said when you have an attack it goes away on it's own with or without treatment. He made me have the solu-medrol transfusions because it has been clinically proven to prevent another attack for 3-12 months. That gives us a window of opportunity to talk about therapy and get started. He said because I still have my symptoms I probably had the treatment too late in my attack, but that it will still go away on it's own. He also said that he has patients who refuse to do the solu-medrol again and he doesn't make them.

I learned something new during this visit. Our t-cells (immune system) regenerate every 3 months. We have lots of them. When mine regenerate, some of them have MS and some don't. I think that I only get lesions when a certain percentage at any given time have MS. Basically I have to have enough to cause damage. There is a new drug on the fast-track for approval by the FDA that kills all of the t-cells in your body. You have no immune system for 3 months. It is actually being approved for cancer patients, but clinical studies have shown it to be a cure for MS. When the t-cells regenerate, 90% of MS patients have no trace of MS. Crazy, huh! That would mean a cure for MS. Obviously there is no long term data, but Dr. Granger is very interested in the research.

I know that I have bored you to death, but you can see all of the information I have to read and the decisions I have to make. It really helps me to write about it. Plus, I can get all of your opinions. Thanks for reading my blog. I think everyone is scared to comment on my blog because they know I am a pretty private person and because most of you text or FB message me about it. A lot of you have also asked me if you can tell so-and-so, who's not on FB and doesn't know yet. I have gotten so much out of writing about everything and talking to all of you. When I start to get self-conscious I think about how all of your support has helped me and I realize how much I need it. If it's on the blog, it's fair game. Goodnight! I need to be well-rested so I can swim with Jac in the morning!

I'm human again

I'm beginning to feel SO much better. I almost feel human again! I'm sorry for all of the depressing FB statuses and comments. I was very discouraged by the end of last week. Not only was I extremely emotional, I hadn't counted on the medicine making me feel worse than I already did. I felt like I couldn't do anything. I was too tired, weak, and constantly dizzy. Plus it was all I could do not to cry all the time. Not fun. I had a lot of stress this weekend that made it even worse. I've become better at listening to my body and resting when I need to rest though.

I have felt pretty good since yesterday. I think it helped that I was able to go out and get some stuff done (with the help of my little sister, Melissa). It made me feel functioning again. I just have to remember to take it easy. I so badly want to run around like I usually do, but I get tired quickly so I have to remember to stop and relax every couple of hours. Plus I still can't drive all of the time. The stinking heat doesn't help matters! I got to go out and have ice cream with Becky yesterday and I got to meet Patty for lunch today. I've been working for Suzi at school for a couple of hours in the morning this week. I'm thinking this week will continue to go like this- Work at school until I get tired (usually 2-3 hours even though Melissa is really doing all of the work), go home and lay down for an hour, go do something fun with someone, come home and take a nap, do some light work at home/dinner with a friend, relax, sleep. I'm hanging with the Cook family tomorrow and meeting Angela for dinner on Friday. Anyone want to hang out on Thursday?

Today I realized that I hadn't returned my contract for the 10-11 school year and they are due today, so I had to make a trip to the Mesa Bank Building in the middle of the day. It was SO hot I was instantly tired, even though I'd just woken up from my nap. I was very embarrassed because most of the time you can't tell when my symptoms flare up, but when Melissa and I were trying to get on the full elevator (after Kevin Mendival got out) my left leg and arm went wonky and I had to throw my arm out to stop the door from closing and then hobble into the elevator. I got dizzy and had to grab onto Melissa's arm. I almost started crying. I look fine on the outside. No one can see my brain lesions (except the radiologist and my neurologist). All the people in the elevator were looking at me like I was going to keel over. I did not enjoy it.

I still have all of my MS symptoms, but they happen less often now. My doctor said the medicine would take 6-7 days to work and I started them last Monday, so I guess I thought it would be better already. I'm not complaining though. At least I can function now! My next doctors appointment is on Monday morning, so I will know about treatment and other things then.

I'm still a little emotional sometimes. Especially late at night. It's silly, but I alternately feel sad and hurt or really good and sappy. Both are annoying because I say stupid things either way. Sorry if I've said something to you that made you say, "Okaaaaay." : ) It stinks because as soon as I'm rational I'm like, "Yeah, sorry about that." Geesh! I'm not going to have any friends when I'm done with this.

Day 3- I'm done.

I'm an expert.

Everytime they ask about a side effect I tell them how I counteract it. Heartburn- I have taken a zantac 2 hours before my transfusion everday. Bad taste- Ice Breaker sours on my lap. Blood Sugar- I've stayed under 5 carbs everday. Of course I thought it was okay to have a cookie after dinner today which led to a blood sugar of 280. I swam and brought it down to 177, but it made me extremely tired and dizzy. Sleep- I nap and sleep about 5 hours the first 2 days. Only 20 min. nap today. I will probably sleep tonight. I keep out bubbles by not lifting my arm. My MS journal is updated everyday. I have a list of questions for my next neurologist appointment.

Camilla took me today. We were highly entertained by the nurses today. Nurse Pam from the first day pictures would like me to let you know that she is single and looking for a nice adventurerous man who likes to travel.

Can you spot all 3 sticks? Clue: Day 3 is the brightest red. Day 2 is to the left of that. Day 1 is barely visable above day 2.

Sandra came all the way down from Flagstaff just to see me. Of course I got extremely tired on the way to my mom's house and only stayed for a couple of minutes.

Sandra, David, and Matt all visited with me for a few minutes. They made me laugh really hard.

Two of my favorite guys. Matt wanted to know if my doctor misdiagnosed me and just forgot to add the "P" to the begining of my diagnosis.

Will letting my cry myself to sleep... again. I keep thinking he's going to rethink the whole wanting to be my friend thing, but he keeps sticking around. I've had a really hard time emotionaly today. I've had 3000 mg of steroids in 3 days and I am incredibly weepy. I'm tired of not feeling good. I'm exhausted. I'm having a hard time accepting that I still don't have control of my body. I hate being so weak and helpless. I hate not being able to do normal things. This MS stuff has kicked me in the butt. It's rough. I do not do "dependent" very well. I relate very well to the girl in Rob Thomas's song Diamonds. I'm trying though. I can't wait for remission and the months/years I get to enjoy before my next relapse. I know I can handle it. I will handle it, but I'm very thankful I'm done with my solu-medrol infusions. Sheesh, I'm an emotional wreck!

I love you all. Thanks for all of the love, prayers, and support I keep getting by the dozens. Lot's of you said you would come hang out with me and help me occupy my time, but I'm just not there yet. Sometimes it's all I can do to sit in the living room with Pam and the kids. Lot's of times I can't even do that. I will take you up on your offers in the next coming weeks though, I'm sure.

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!

Day 1 In Pictures

6:45 A.M.- Mom making a list of all of my medications for the nurses.

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.

7:40 A.M.- I got back to the open transfusion room and my blood pressure was a little high. 134/89. Not normal for me. I'm a 108/69 kind of girl. I might have been a little nervous.

7:55 A.M.- My awesome nurse trying to find a vein that she could leave the IV in for all 3 days. She tried hard, as my face can attest, but she ended up having to use my right arm, right in the crook of my arm. That one was painless. Bad news: I have to get stuck everyday. Good news: I get to go swimming!

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.

8:45 A.M- Me and my mommy! The infusion ended at 9:10 A.M. It was an open infusion room and I was surrounded by men in their 80's. They were really funny. I couldn't hear them, but between them and the nurses, they kept my mom laughing.

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.

The transfusion was not as long or as bad as I thought it would be. I did not get sick like I thought I would. My symptoms have not gone away yet (the nurse said sometimes they do on the first day), but my doctor said it could take 6-7 days. Pam is taking me tomorrow! I'm going to try to be a little more active tomorrow. Maybe even stroll around the mall. I'm not allowed to be in the heat and I was instructed not even to power walk. It's actually kind of funny. I can get in the pool at night though! I had a bad metallic taste in my mouth during the infusion and it lasted for about 3 hours after. I also got mild short-lived heartburn from eating a hot dog and again with chicken. Luckily I had researched it and was prepared for those side effects. 5 zillion people text, messaged, called, and emailed me today. Thank you all. It's kind of overwhelming to realize how many people really love you. I have always been a huge avoider of direct attention, but it has been really life-affirming and strengthening to hear all of the well-wishes and know that so many people are praying on my behalf. Day 1 down. Bring on Day 2!

Bring on the Infusions

It is very humbling to realize how amazing my family and friends are. I don't know what I ever did to deserve them. I think it has something to do with luck. Plus, my Heavenly Father must love me a whole bunch. The blog told all of my friends that I needed to know, and my momma told all of my family so I wouldn't have to. Calling them did for her what writing did for me. It's a good thing too because it really stresses me out when my mom is stressed. Sometimes I think having this happen to her little girl is worse for her than having it actually happen to me.

I have an amazing, powerful, very close family. My aunts and uncles are like extra parents and my cousins are like extra siblings. Camilla is like my dad. : ) It can be a little intense at times, but I have always been confused about how people survive in this world without my family. I know I couldn't. This description of my family makes me laugh because it makes us sound like a mafia family. You don't want to mess with us! They are having a fast for me. If you are not sure what fasting is or why my family would do it for me, you can read about it at the link I added to the bottom of the page. Being fiercely independent, I never wanted them to have to do that for me, but knowing that they are makes me feel more comforted than anything else in the world.

I'm planning on staying with Pam this week. I didn't want to be alone. I'm afraid the solu-medrol infusions are going to make me sick. I've had a headache for 4 days from worrying about it so much! I didn't want to just be sitting around thinking about it all week, so I figure that Pam's house was the best option. First of all, I already consider it my second home. Secondly, with Pam, Mark, the kids, and Alex around I'm bound to be pretty entertained and won't be able to spend a lot of time moping. Plus, when I was having the MRI and hating every minute of it, I closed my eyes and discovered that my happy place is her backyard, surrounded by friends. On Saturday Pam told me she was working on a surprise for me. When I got to her house on Sunday night they were all sitting in the "Kelle Room." They had spent all day cleaning out boxes, putting up shelves, and setting up a futon for me in their family room. Tonight I went over to drop off my car. The Kelle Room is amazing. It has a t.v., a computer, a bed, a side table, a rocking chair, and I have my own bathroom. I will be posting pictures when I get there tomorrow.

So, I'm feeling all right today. I'm very tired. The last couple months of school I'd been talking about how weird it was that I was sleeping so long every night. I even told my doctor. Then, when school got out, I just assumed I was on a summer schedule- sleep 9-10 hours a night, work for 4 hours, take a nap, swim, do it again. I thought it was kind of strange, but didn't really give it much thought. On Thursday Dr. Granger said, "I bet you've been tired." I was like, "Yes! I have been tired!" Ha ha. Now that I have the thought in my head, I'm just tired all the time. I also feel dizzy a lot. Pam and Mark helped me to realize I've been ignoring my symptoms hoping that they would just go away. Now when they happen I think, "Oh yeah. There's something wrong with my brain." It's a little harder to ignore.

I'm scared. Scared the medicine is going to make me sick. Scared I won't get better. Scared that it's just going to keep happening. Scared about the symptoms I will have in the future (I know I've been lucky. None of my symptoms are painful). Scared nobody is going to want to be with someone who has MS. I'm scared of being alone. I'm scared of being a burden. I'm scared that I'm not going to be strong enough to deal with this and live a good strong life.

Deep down I know it's going to be okay though. It's weird, I kind of knew he was going to say I had MS. I also know that this treatment will make me all better for awhile. I also know I'm going to have another attack eventually. I know I'm going to be diagnosed with remitting-relapsing MS. All of these things should be maybes, but I've already accepted them.

Luckily for me I couldn't have better family and friends. Ken and Cheri make me cry with how much love and support I feel from them. Not in front of them of course! : ) It is such a blessing to know that I have so many people who would do anything for me and are sending me positive thoughts and prayers. For some reason I only feel comfortable crying in front of Will. Luckily for me he is good at listening to me, hugging me, and telling me it's going to be alright. Aaron is good at making me laugh. He called me a klutz this weekend when I couldn't walk straight, then said, "I hope you know this MS thing isn't going to stop me from making fun of you." It made me think that everything was right with the world. I also got a voicemail from him tonight informing me that in November I need to vote yes on prop. 203 so we can get me some medical marijuana. I couldn't begin to verbalize how much Pam means to me. She is priceless. Uncle Carwin gave me a blessing tonight. I'm pretty much good to go. I also have so many other good friends who I know I could call in an instant. I was going to list them, but then I realized the list is too long. Now I'm crying again!

Alright. It's off to bed for me. I have to be at the hospital at 6:45. Yikes! I feel so loved! Goodnight!

Things I've learned in the last 24 hours

Yesterday morning I had an appointment with my neurologist, Dr. Granger. He told me my blood work came back normal, but my MRI showed abnormalities. He explained that I have lesions on my brain. The first time he said, "...MS..." my mind was so shocked that I stopped time, rewound it, and listened to him say it again, just like they do in the movies.

To clinically be diagnosed with Multiple Sclerosis (The revised McDonald Criteria) you have to have more than one (multiple) attacks with MRI's that show lesions in at least 2 different parts of your brain. They have to be at least 30 days apart. You also have to rule out anything else it can be. To be diagnosed with only one attack you have to have 9 or more lesions affected multiple parts of the brain. I only have 7 or 8 lesions (multiple parts of the brain) and this is my first attack. Dr. Granger briefly said that if this only happens once I would be diagnosed with something like acute vasculitis (there was an acronym that had more words, but I can't remember), [I just figured out it's called acute disseminated encephalomyelitis] he strongly believes it's not that. Basically, because my attack and MRI show classic findings of MS and all of my other tests have come back normal, I will most likely be diagnosed with probable MS.

Dr. Granger wants to treat this attack before getting into treatment options. Next week I will go to Banner Baywood on Tuesday, Wednesday and Thursday to get injections of solu-medrol through an IV. Then I will see Dr. Granger in a couple of weeks to discuss treatment options.

About 2 months ago I noticed that when I stood up my right arm and leg would tighten up and kind of go numb. It got a little worse and more frequent so I brought it up to Dr. Shredder at one of my appointments thinking it was a complication of one of my medications. He said it wasn't normal and referred me to a neurologist. Dr. Granger said it was called paresthesia and said it could be caused by over 400 different things. He said we would start by testing for the scary stuff first with a blood tests and an MRI. He said statistically nothing would show up and we would do more tests when we got the results of the first round. The insurance took several weeks to approve the MRI and I finally had it done 3 days ago.

In the meantime, my symptoms continued and the surface of my left arm went permanently numb. Then the weird attacks on the right went away and my left leg started going wonky. I would tell it to walk, but it would kind of do whatever it wanted to do. I compensated by just kind of throwing it out and pretending everything was fine. It always seemed to start out shaky, but eventually I would get it under control. Then I started to randomly get dizzy for a very brief span of time. Actually, all of my symptoms (but the skin of my left arm being numb) last for under a minute. So, even though it sounds kind of crazy it didn't really effect my life. Well, with the exception of my broken left pinkie toe. That is the fault of my wonky left leg. I've learned to be more careful though. The latest symptom is when I stand up my abs on the left side go numb and get that pins and needles feeling. It doesn't hurt or make me unbalanced, it is just extremely weird feeling. It actually makes me laugh. All of my symptoms happen more frequently now.

I am totally in the researching/processing/analyzing phase. I won't really be able to tell you what I'm thinking or how I'm feeling until I'm done thinking. Those of you that know me very well know that sometimes that takes me awhile. However, there are some things I have learned about this whole situation. I will list them for you.

Things I have 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.

If you know someone who has MS and you have a scary story to tell me, please refrain. I wrote this because I needed to. I am a very private person, but I don't like to hide things. However, I would prefer for you to know without me having to tell you in person. : )