Today was the day!!

Today was race day!! Was I able to train to be able to run a mile.....well, not exactly. Unfortunately, every time I trained on my treadmill, I would walk a mile to a mile and a half and that evening I had a migraine. It wasn't worth it to me. So, I decided to make sure I stayed as active as I could, park a little further from the doors of the grocery store, do more things with K, etc. However, by not "training" I was really nervous that I was not going to make it; that I wasn't going to finish. I had dreams of the race and I was having a little bit of anxiety about it. It was supposed to be a fun race, but this was my first race and I wasn't sure what to expect. I also did not want to appear weak and did not want to slow my friend down. Luckily she told me that she was not going to run due to her bad knee, and her other friend that was joining us had no desire to run either. I was okay with this. T was going to drop me off and go to his office to hang out for the hour in case I wasn't able to finish and in case I needed him to come get me. Yesterday at our packet pick up, my friend told me that she would drive me and we could stop whenever we needed to. She said she would take care of me and not let me overdo myself. What a friend, eh?! I wanted to finish more than anything and wanted to be able to say I did it. She kept telling me that I wasn't giving myself enough credit. She was right, I wasn't! Race day came and with all our fun accessories, I was no longer nervous and I knew I could do it! The atmosphere was AMAZING!! There were so many people. The runners brought their kids, dogs, and even handicap people came in their wheelchairs and other medical equip. to help them "run" the race. Half if not more of the runners walked the race. I was worried that I would be last...silly me! I also realized that the cooler the weather is, the better I do. Winter races may be my thing! :) When I get to hot, that is when it is harder for me and my limbs to stay strong. This race was a lot of fun and I need to stop these negative thoughts and go enjoy the fun without worrying about my health. I do need to give myself more credit! I have one life to live so why not live it being happy and doing things I want to do instead of worrying what may happen. I finished in glory and with more energy to spare! :) Merry Christmas!!

I AM GOING TO DO IT!

In January 2012, I had made myself a goal that I would run a mile. Today, November 15th, I have yet to even attempt to run a mile. I am not much of a goal person. Usually if I say that I am going to do something I do it right away instead of giving myself a year because I always put it off. Well, today is the day. :) My friend had asked me if I wanted to run in a race called The Ugly Sweater 5K. It is through downtown Omaha and everyone puts their ugliest sweater on and runs! I had helped one of my best friends put on a race a few weeks ago called The Cupcake Challenge and everyone had to eat a cupcake at each mile. I maned one of the stations and watched people race and eat a mini cupcake. It was a lot of fun and actually got me motivated to run in a race like this. All year my family members and friends ran in 5K's that were Color Me Rad, Mud Run, and all sorts of different runs that I was jealous that I didn't participate. I always said "there is no way I can do that"..."that will be too hard for me"..."what if I can't make it?"..."I don't want to be seen as weak" and all sorts of excuses. Well, no more! Why limit myself to what I can do and can't do. I at least have to try, right? I see so many examples where people's ailments don't hold them back. So, I am starting tomorrow to "train". I looked up online and am doing a "Couch to 5K" program to help me try and get the strength to walk/run 3.1 miles. 1 mile was my goal to run so if I can do that in this race that would be AWESOME. I will then walk the rest...or maybe run more than a mile. We will see. I have put my husband in worry mode but I told him not to worry. I will pace myself and not overdo myself and not try to win...but to finish. I have passed my tired weeks and am back to normal, so let's hope the energy stays with me to train. I have until Dec. 16th! Wish me luck!

Just plain old tired

These last two weeks have been a little tough. I have just been, well......tired. I think I have had to take a nap every day since my last post! And, it usually is an hour nap, but it could have been longer. I am so grateful to have a job where I still feel like I need to get things done by a certain time to keep me motivated to get up from my nap and not sleep the afternoon away. AND...K wakes me up from her naps so she keeps me from sleeping all day too. :) On the 3rd of this month, I was finishing up work and getting ready to go to school. All of the sudden my eye started to do some funny things and I started to get nervous. Then, all of the sudden, I could not see out of my right eye. If I looked at K straight in the face, I could not see the right side, I could only see one eye. I started to get more nervous! As time went on, maybe 20-30 min, my vision started to make it's way back. It is really hard to explain the feeling of when that happens. It is like my vision twinkles and I have a weird sensation. From when the whole problem began to when I got it back was only about 45 minutes. I had decided to stay home from school because I didn't feel well and didn't want to risk driving at night. T took K to his church responsibilities that night and I laid in bed and watched tv the rest of the night. When T came home, we put K to bed and I got ready for bed myself. I looked in the mirror and my right eye's pupil was dilated and my left eye was normal. It was the freakiest looking thing ever and I am sure T would agree. :) I called my neighbor since she is a nurse and asked her what she thought. She said (along with T) to sleep it off and if it is still like that in the morning to call my neurologist. So, I went to bed and prayed I would wake up in the morning. I almost thought I was having a stroke or something. Well, I woke up and everything was back to normal. I called my neurologist anyway to inform him of the occurrences and he said it was signs of a migraine. I have had the same vision phenomenon occur twice in my life that I can recall that both had a migraine follow, but I had never had the pupil dilation that occurred with it. I did not have a huge migraine that I actually was waiting to happen. Either my pain tolerance has increased due to the fact that I have headaches all the time, or I forgot about the pain since I was too scared something else was happening. Regardless, this may be the reason I have been so tired lately because of this event. This is what I am associating it too. I will take this over an exacerbation any day! But, two days ago after a nap I woke up and I felt fantastic. I actually had energy to do things! It was awesome. Yesterday was just as fantastic and I don't think I have taken a nap all weekend. So, I am back to the top from being down. All is well and I am so grateful for a wonderful husband and daughter who always just seems to know when to just let me lay on the couch!

I may have MS, but it doesn't have me!

The last 3 days I have been.....well...TIRED!! It is almost like the tired that women out there who are pregnant in their first trimester tired. Ugh! I have no energy to do ANYTHING. (PS. I am not pregnant) Now, even a normal person experiences these days of tiredness. I never know if this is a normal thing or if this is an MS thing. MS is so hard to figure out sometimes. I was talking to my sister yesterday and she is just as tired. She asked why I was tired, and I said I don't know. There has been no stress, I didn't over do myself recently, the weather has been BEAUTIFUL so I didn't get overheated...I am just tired. Monday, I had no energy but still got out of bed and did things. Tuesday was even worse. I don't think I even got out of my pajamas and I was barely able to muster up the energy to get off the couch when my daughter had to go potty. I did get a 1-2 hour nap in both days and that helped along with getting to bed early and sleeping all the way through the night. Of course, I work from home so I was able to get my 2-3 hours of work in, in increments of 40 min or so. Today I feel better and felt like I could get some stuff done. I always feel so guilty with my tired days. Before I had Kayda, I went to a National MS Society seminar and we watched this video. There was a woman on there who was laying on a couch saying whenever her son wanted to play, she said she couldn't and that she was too tired. I told myself that if I had children I wouldn't never do that and that I would play with my child. Well, I think of that woman ALL THE TIME. And when I am tired if my daughter wants to play or do something I try to suck it up and do the best I can to play whatever she is wanting to do. Yesterday, it was a "here Kayda, want to watch a movie?" day. The nice thing about that is she LOVES to watch movies! I still feel guilty about sticking her in front of the tv when I have no energy to do anything, so if there are any ideas out there for alternative forms of entertainment, I am all ears. :) I found this little quote that I posted to this blog that says "I may have MS but it doesn't have me". I am trying every day to live by that because I have a life to live, why not live it the best I can and not miss anything because of my MS.

Cleaning

Tyson and I decided to create our own little job chart. :) Cleaning the house all in one day is literally exhausting. I tried to do it in one day but it really take a lot of me. It would turn out to go two weeks in between cleaning the bathrooms, dusting, sweeping and mopping the floor. I am pretty good at vacuuming because it doesn't take long and it helps make it feel like the house is somewhat clean. Well, I saw on Pinterest to spend 15 min. a day to always have a clean house. I shared the idea with Tyson and he is totally on bored. I had made a magnetic calendar that I was going to use for meal planning, but I have had it for almost a year and didn't end up doing it. It now just sits in the corner of my kitchen and I just use it for a calendar and for birthdays. I made up some chore strips and every day there is something listed. Tyson and I are "scheduled" every other day and it is working out fabulously! We are just doing it M-F and if we miss a day doing our chores for the week, Saturday is the day to do it. :) Once Kayda gets old enough, she will get thrown into the mix with us. So Monday's are vacuuming the whole house, Tuesday is dusting and windows, Wednesday is master bathroom, Thursday is main bathroom, Friday is sweep and mop. Of course we still do the daily dishes and cleaning the counters and weekly or bi-weekly cleaning of walls (depends on how much dog goober is shaken on them) and other things we find...but this makes me feel like our family is all into this together! We are a team and it's a team effort. Thanks Tyson for being such an AWESOME husband who loves to cook and clean. :) He really does make sure I am staying healthy by helping out when I don't have the energy!

Sports, Pregnancy, and New Medication

From 2003-2009, there were some up's and down's and a few relapses in between. For the most part I stayed pretty healthy. It seemed that I would have the hardest times in January. I attribute this to the stress of the holidays so when January comes around and I have time to take a step back my body says "Okay there darlin', you did a little too much!". However, I had to learn to realize that holidays shouldn't be stressful so the whole "January" thing only lasted a few years. My main symptoms were weakness and tingling in my arm and leg and fatigue. I also didn't have the strength to do many things and my coordination was off. I used to be a softball player. I still play in co-ed teams today. Unfortunately I can't do what I used to. When I throw short distances, sometimes I throw straight into the ground. Even when I am trying to throw a frisbee or skip rocks while at the lake, I can't seem to have that not happen anymore. It is the weirdest thing as I used to LOVE softball, ultimate frisbee, and skipping rocks at the lake with my siblings. Now, I try and fail and it is funny at first but I get frustrated and just stop and watch others. When I play softball I make sure I play outfield because I seem to be able to judge better throwing far distances. Although it is frustrating at times, I am still VERY grateful that I can still do them (if that makes sense). So many times I speak to people who have it a lot worse than I do, there is nothing better than the things that I can do. I had dreamed of the day that I was going to be a mother. When I was diagnosed with MS I had no idea how that was going to affect my chance of becoming one. How can people do it? How do they have the strength, energy, and money to have a child? Multiple Sclerosis is one of the most expensive medical conditions to have, so I was afraid of not being able to afford it. Many people say you can never afford having children...so don't wait to have money because then it will never happen. :) Anyway, with discussions with my neurologist and other people, women with MS seem to have awesome pregnancies. It seems as though all symptoms leave while pregnant and if women breastfeed, the chances of relapsing decrease. After hearing this information I was ready to do it! :) I seemed to be at ease. The trick is that a patient is advised to stop their medication 2-3 months (I think) before conceiving. This would be fine and dandy if you knew exactly when you ovulated to get pregnant. I stopped the Avonex to get pregnant but my cycle is a bit messed up. I also have a condition called polycystic ovarian syndrome. We tried for 6 months using Clomid and nothing. We went to an infertility specialist and the doctor advised that I would be at a very high risk at having multiples. With having MS and multiples it would be disastrous. We could abort some of them for health reasons, but we both agreed that the option to do so was not right and we would be uncomfortable doing so. Our next step was adoption. Back on the Avonex I went since our decided path was to adopt. Roughly 6 months later, a girl that we knew from church asked us if we wanted to adopt her baby. She would deliver January 2010. We were ecstatic! I can't tell you how awesome it was to feel that we were going to be parents. What was even more awesome, I found out two weeks after she chose us that I was PREGNANT! October 2, 2009 was the day that I found out I was pregnant and the day that I stopped Avonex.

Was I going to have 2 babies then!? Could I do it? I got really nervous and felt uneasy about it. We told the birth mom we would still be happy to take her (it was a girl) and she still wanted us to. January came and the birth mom decided to keep the baby. Somehow, I knew that was going to happen as it just didn't feel right. June 2010 our sweet, adorable, precious, healthy little girl was born and she has been a blessing since. All of those things people said about MS and pregnancy was right. I had the BEST pregnancy (I think) and I think I have the BEST daughter. She was meant to be ours.

I was able to get the sleep I needed since she was such a good sleeper and napper. I never felt sleep deprived (from what I can remember), and all was well. I nursed for 10 months and decided that since I had been off my medication for almost 2 years it was time to start back up again. I got optic neuritis when K was about 10 months old so that is when I decided to stop nursing and since I had to be put on steroids. I developed this condition once before and it is no fun and painful and I was scared I was going to loose my eyesight. When I had this condition with K, I was really scared I wasn't going to see her again. Luckily, steroids have been made to correct the problem and I was able to get my vision back to regular. I was on Avonex for maybe another year and my doctor and I decided to try a different treatment. I seemed to have some sort of relapse once a year. My MRI also showed that the lesions were getting bigger and more of them. I started on Gilenya or Fingolimod. This is one of the first pills to take. YAY!!! No more shots for me!! :) I was really nervous to begin this treatment as it is so new and really scary side effects that could occur. But, I am happy to report that it has been 1 1/2 years since my last relapse and it is AWESOME!!! There are no real side effects to the medication and it is a pill. No complaining here.

The Next 2 years

After I was diagnosed with MS a lot had changed. I felt as though my whole life changed especially my perspective and my outlook on things. It was also very hard to limit myself and try and change the way I do things. It appears that stress was the factor to my sudden exacerbation. And to this day, stress is a big, BAD thing for my body. The hard part is I stress about everything, I always have and always will. That is just my nature I guess. The nice thing about the beginning was the opportunity I had to spend time with my dad who was confined to the recliner due to having back surgery only a week or two before I came home. We were companions and I will cherish those days forever. I was a missionary for a month at home, in which I had time to recover, talk to my doctor, start my medication (which was Avonex, a weekly intramuscular injection), and decide what I was to do. I ended up staying home and not returning. Some days I regret it and some days I don't. I still find it weird to say I served a mission when my mission was from November 2001-February 2002, and February was spent at home. It was a very short mission and the questions people ask me makes it awkward sometimes. Those questions are "What area did you serve in?". I only served in one. They look confused so I have to say I came home early due to an illness...then there is a "Do I dare ask what that illness was?" look. Sometimes I share if they ask and sometimes I don't. I don't want to be pitied or be seen as weak. Call me crazy, but that is just how I feel. However, with this blog, I hope to be able to learn to be proud of what I have gone through and how well I am doing so that I don't have to have those feelings anymore. I need to stop caring what other people think and just have more hope and faith that I will continue to do well. Some other times that I cherished in that month that I was home was the weekly temple trips with my grandmother. She worked at the Mt. Timpanogus Temple and would pick me up and take me and help me through the sessions. Since I didn't have much mobility, she helped dress me and make me feel comfortable being the one who had to stay seated when everyone had to stand. The other workers in the temple where just awesome and it was always a delight going there. It kept my hopes and spirits up and it was fun to see my improvements every time I went back the next week. I also can't forget about my mother. A quote that I wrote in my journal during this time was "My mom is the best. I admire her so much! She is AMAZING. She has been such a strength to me." I love you mom and am so grateful for your constant love and support, not only during these last 10 years, but always. May 2002, I was back to "normal" and was able to purchase my 2001 Ford Escape (which I still have to this day). I started work at 1-800 Contacts and met my husband Tyson. Actually, Tyson and I didn't really start getting to know each other until July 2003 but we both started working there within a few months of each other, so we knew of each other and passed each other when we switched shifts. When we started dating, it was GREAT! In the back of my head I was worried what would happen if and when I mentioned that I have MS. When it did happen, which was our second date, I got really nervous. I remember thinking "I wish I could know what he was thinking". But, he just asked questions about it and it didn't seem like it wasn't that big of a deal. Our relationship continued and nothing seemed to have changed since that conversation. In fact it got better. We were married that December 2003. I can't remember if he told me before or after we were married that his friend told him to not marry me because of my MS, that it was too much to handle/too much baggage. It didn't stop him, and I am glad he didn't let it bother him. He has been my biggest supporter and caretaker. He is always worried about my health and makes sure that I stay healthy and strong and does everything he can to help make that happen. I am so lucky to have a husband like that. I went two years until my next relapse, which happened to be almost exactly 2 years from the first. That was when Tyson got to see what it was all about. It wasn't as big as the first one...in fact to this day I haven't had anything as bad as the first relapse. Like the first time, I was put on solumedrol IV for 3-4 days along with Prednisone. I hate that stuff. But, it works and helps me get back to my normal self. I hate it when it happens because I can't do anything. I feel I am a pretty independent person, so when I can't do the dishes, vacuum, bathing myself, doing my hair and makeup, it puts me in a downer and it is a real patience tester. Luckily, I have had Tyson, family, friends from church step in to help in anyway they can.

The Beginning

I was laying in bed last night, and the thought came to my mind to stop hiding that I have Multiple Sclerosis and share my feelings about it. There are so many people that know someone who has this chronic disease and ask me what I am doing, taking, and how I stay looking like I don't have anything wrong. And, it just so happens that someone is running for President right now who's wife has MS and the current first lady's father has MS. So I have been feeling connected to these people and everyone who seems to have the disease. So, I will be honest in my posts and share my thoughts on this disease that maybe I can help someone feel like they aren't alone. Maybe one day I will turn it into a book to give to my daughter so she knows about it and what I went through. So, here is the beginning of my MS story. January 2002, I was serving a mission for my church in Atlanta, Georgia. I had only been there for a month. It was an exhausting, heartbreaking, testimony building, strengthening, and delightful time of my life. It was the first time that I had lived outside of Utah and that far away from my family. I indeed was homesick and VERY tired. One morning I woke up to start my day. The usual scripture reading, showering, breakfast, etc. My companion wasn't feeling good for the past previous days. We decided to take her to the doctor for a sinus infection. As I can remember, I started feeling that my arm was asleep. I didn't quite understand as it was the weirdest sensation. I thought to myself that I must have a pinched nerve in my neck. From my journal entry that evening (Friday, January 25, 2002), "Today was a good day. Something weird is going on with my arm. It is all asleep. I can't really write with it....I'm kind of in a weird mood, so I'll write later. I'm going to bed. Sorry for the handwriting, I think I have a pinched nerve! Oh well, life goes on!" The next morning is when it all began. I woke up to start my usual routine, but I started with my shower. As I was cleaning and washing my hair, I realized that I could not feel the water going down the right side of my body. I panicked. I really did freek out. I got out of the shower and got out to get my companion. When she saw me and how freeked out I was, I remember seeing the look on her face. She too looked frightened and wasn't sure why my right side of my face was drooping. Here is my journal entry that I wrote on Friday, February 1, 2002.

And so, that was the beginning. It has been 10 years and 9 months since I have known that I have MS. There has been up's and down's, but I hope to share my story and maybe, just maybe, someone will feel like they aren't alone or that we can deal with this together. We all have our trials and things we have to face in this life, this just happens to be mine. I don't write this to get sympathy, as that is why I don't tell many people that I have MS. The common reaction is ***GASP*** "I'm sorry!". I hate that. It makes me feel smaller. But, I am now wanting to share and hope that we can all strengthen each other with all our different trials. Until next time.