The speed bumps of life

It has been a busy few weeks and the calendar shows that it will only get busier! I visited my doctor in Nashville the day before Thanksgiving and I was hopeful for really good news. I had been feeling so good, I knew it could only mean I was in the remission phase of this relapsing remitting disease. That was not the news that we received. It appeared that I had more brain lesions and that the lesion on my optic nerve had gotten worse. This means that the injection therapy that I have been using for over a year did not work. Since there is no cure for MS, the only thing to do is to try disease modifying therapies like the injections. My doctor suggested a fairly new therapy that is a pill. He said he has seen success with this method and I was excited about not injecting myself anymore. None if these therapies come without risks or with a gaurantee. With this pill there is the chance of severe macular edema or swelling of the eye nerves. Also, I will have to take the first dose in the office in Nashville because it causes the heart rate to drop. I will have to be monitored for six hours for initial side effects. I will take my first dose next Tuesday during Christmas break. I am praying for a smooth transition.
I have learned to overcome many obstacles and have learned when my body is telling me to slow it down a little bit too. I have had a smooth job transition and fully believe that Godmis using me as a vessel of hope for someone who might need it. My students are a daily reminder to me of why I followed my calling to this profession and I thank God several times a day for the ability and opportunity to do what I do.

Together we can!

Saturday September 24 marked the return of the MS Walk to Paducah KY. It was a rainy morning but the rain stopped just in time for the walk to begin. I was humbled to see my family and friends there to support me, especially Jordan's Tilghman Football teammates who also got up very early to join us! This week will mark the one year anniversary of my diagnosis. As I sat in the stands Friday night and watched my son on the football field, I realized that I am a very lucky girl. I know everyday that EVERYTHING happens for a reason.  I have had some bad days over the past year, but each day I am learning. Learning to live with this sometimes dibilitating disease, learning to support others who have this life altering condition and most of all learning to be an example to my children, my family and my community. We had a great time at the MS Walk and I am excited to do it again next year!

To a New Beginning

This weekend we have been working hard to get moved in to our new home in Paducah. We have been slowly moving over the past few weeks but this weekend we got the majority finished and we are ready to start our new life in our new city. The intent of the move is for me to be close to my new job so that I will be able to rest after school.  I have been teaching at Paducah Middle for a month and I love it. I feel like I am where I am supposed to be, and now we can begin finding our way in the community as well. I have already made a friend in the neighborhood and have found out that her son and Jordan have been friends since the first day of school. I am excited about the possibilities in our new home and look forward to many years here!

What a difference a year makes!

Today I visited Dr.Hunter for my regular follow up. I am approaching the one year anniversary of my diagnosis. This was the first time in a year that I have not had to have a steroid infusion following a visit! What I was told was that while my symptoms point toward a relapse, I could hold off with steroid infusion right now. It is great to get good news. I am feeling great and getting acquainted with my new job. It is really amazing what a difference a year makes!

Please join us in raising awareness for a cure!

Dear Friends and Family,

Fall is around the corner and I’m gearing up for the 2011 Walk MS Paducah to benefit the National Multiple Sclerosis Society. I will walk to help end the devastating effects of MS and I am asking you to join me by making a contribution to support my effort.

The National Multiple Sclerosis Society is dedicated to a world free of MS. They simultaneously fund research for a cure while also helping people who currently live with MS lead more fulfilling lives. There are more than 4,500 people in Kentucky and Southeast Indiana living with MS. I’m walking to make sure the Kentucky-Southeast Indiana Chapter can continue to offer programs each year for people living with MS and their families. I’m walking to help fund research into the cause and cure for MS. I’m walking for those people with MS who can no longer walk. I’m walking because I care.

Please help by making a donation - large or small - to fight MS. Or, why not join me on the day of the event? Become a participant and side by side, as teammates, we can work together to raise the funds to make a difference.

Please help me reach my goal by sponsoring me in the Walk MS and help the National MS Society reach the ultimate goal of a world free of MS.

Sincerely,
MeganStorey

Visit my Participant Center and make a secure, online donation today!

Join Me as a participant in the Walk MS and start making a difference!

To send a donation: Make all checks payable to: National MS SocietyMail to: MeganStoreyP.O. Box 303 78 Elsey StBardwell, KY42023

  

 

A Little Bit Stronger

I was thinking today as Aaron and I were playing in a couples golf tournament where I was a year ago. I do those kind of things from time to time and then it dawned on me.... Today, my life is 100 percent better than it was a year ago! We know what my ailment is and how to control it and now we know what I can and can't do (which isn't much!). The fact that I can play golf for two days is a big improvement! I have to say that I do get pretty tired but the point is I can live life and that is something to be thankful for each and everyday. I hope that others who are experiencing what I am going through are able to find something that helps them enjoy life. That is what helps get me through! I am able to "witness" so to speak to a few others with MS from time to time and keeping a positive attitude and finding happiness is what I try to help them with as well. I praise God for these opportunities.

Reversal of Destiny

In my last post, I made the comment that I wanted to focus on making memories with my family this summer. Now that the summer is nearly over, I wanted to share a few pictures of just that. Last weekend we had the pleasure of taking Jordan and some of his friends to play in the Babe Ruth 15U State Tournament. We took in a Louisville Bats game while we were there. I was so thankful for a healthy weekend so that I could enjoy the time with Aaron and all of the boys. I know that there won't be many more years that Jordan wants us to hang out with him!
Last week I found out that I will be joining the faculty at Paducah Middle School as a Reading Teacher. I am so excited for this new opportunity. I have been finishing the Beth Moore Esther study over the past couple of weeks and during one of the sessions, Beth talked about reversal of destiny. She refers to this as a time in which you are headstrong on a path that you think is right and that is the path for you until God puts the breaks on and turns it around. I think that is just what has happened to me over the past year.  My life has been turned around, and around again more than once when I thought I was on the right path!  This all goes to show that God is always in the pilot's seat! I have felt very good throughout the summer, but everyday I am still learning my limits. Heat is hard on MS patients so I have learned to listen to my body and slow down when I need to.

I am so excited to embark on the next chapter of my career which coincidentally has reunited me with two really great friends from my past. I didn't even know either of them worked there until I was hired! Looking back over the past three months I have never known more than I do right now that faith in God is what it takes to make it through the storms.

Life isn't always beautiful...

I came across the song which is the title of this blog just the other day. It is funny how a song can have different meanings at different times in life. I have to admit that I wasn't a huge fan of that song when it first rolled around but the other day when I listened to it again I thought about how much meaning that song has to my life now. As the song goes life knocks you down sometimes... And I have certainly been knocked down! Many of you who follow me know that I have been on the job hunt this summer. It has not been easy let me say! I know through my struggles this summer that God does everything to humble us. I have learned this summer that when one door is closed there will be another opened in some form or fashion. I am learning patience and prayer work best for me. I have felt very good over the past month and have spent lots of time with my children. My vision continues to bother me but nothing that I can't handle. The most important thing that I am learning through all of this life change that I have experienced over the past few months is that while life isn't always beautiful, it IS a beautiful ride. All of my experiences are and will continue to make me stronger!

Life Before.....

It is finally summer vacation and I am TRYING hard to rest. I have a couple of weeks off and then I will be doing Kentucky Reading Project for the last two weeks of June. I am very excited about this and I am looking forward to it. I will also be hosting a book club  for 4th and 5th grade students through 4-H for a week in July. I am excited to be supporting summer reading. That was such a big part of my life as a child and my own children's lives. 

While Lyndsey and I were sitting in the living room this week, she was emptying her camera of hundreds of pictures and she came across a picture of she and me from Labor Day 2010. I could tell how much she had changed and matured this year, but I didn't want her to know that! What she said was "Here is a picture of you and me before you were sick." Now, we all know that I had MS then too, but I asked her if I looked different now, I needed to know! She said "No, but it was just different then."
I know that this has changed me, physically and emotionally, but I don't think anyone ever thinks much about how it changes a family.  Until this year, I have never missed an event that one of my children were a part of,  now I have to usually get the recap from Aaron. Many evenings I am too tired to go, and if you knew me "when" you know how much that bothers me. 

Labor Day 2010

Labor Day 2010

Summer break is going to be not just a good time to rest, but hopefully a good time to make more memories.

In the face of the storm

As most of you know, I took some time off after my hospital stay in April. Our doctor had suggested the rest of the year however I had other plans and promptly let him know that didn't work for me! I started back on half days for about a week and a half and then back to full days. It was tough at first, but each day I have 23 pairs of eyes looking at me and that is better than any injection or pill that they could ask me to take. When I am with my students I don't have to think about the fact that I can't feel my arm or that my leg feels like it weighs a thousand pounds. All I have to think about is what they need from me. 
This year has been special from the beginning. I looked at my roster and realized that out of 22 kids, I had already had 17 of them in 2nd grade.  That was just in my homeroom.  I already knew these kids! I guess that is where the part about things happening for a reason comes in, early in the year, when we knew something wasn't right with me, I knew that this group was going to pull together with me.  We overcame my initial diagnosis and my short little hospital stay and we were raring to go to finish out the school year. Then we were hit with tragedy again. On May 16, there was a bus accident involving 1st and 2nd grade students who were on an A.R. trip. We lost a student during that accident and had several others including teachers injured. Stress magnifies my symptoms and makes me feel worse in general. I could have taken the rest of the week off to stay rested but I knew in my heart that my students needed me to explain this and make it ok for them. While it was physically and emotionally draining, I worked through that week drying tears and supporting my co-workers who were heros in the accident. 
I thought I was weak, I thought that  this disability might have gotten the best of me, but I realized over the past week that I am still the same girl that I was before who would spring into action to solve a crisis when needed and that was what my students needed.  I will miss this group when they move on in the fall.
And now, I promise to rest......in the summer!

A long afternoon in Nashville

Today we went back to see my MS specialist in Nashville to discuss my recent hospital stay and what caused it. It appears to be part of the relapse that I was having a couple weeks ago. What he told us that was very surprising is that he categorized it as mild in comparison to what could happen. I am going to continue taking Rebif injections three times a week. He told us this medication will help protect my brain and will help me to live a longer and hopefully active life. It just takes time. What he reminded us is that this is a brain and spinal cord disease and therefore is very unpredictable. I am a rule follower by nature so whatever I am told to do I will. I appreciate all of the thoughts and prayers. This is just a bump in the road and I hope the road is long because I can handle the journey.

The Best Laid Plans......

Many of you have been wondering about me since I was in the hospital last week so I wanted to give you an update. Apparently I had an episode of optic neuritis that came on very quickly. Imagine when you are so sleepy that you can't keep your eyes open, well, that was happening in just one eye and I was in the middle of a lesson about the Civil War.  I noticed that I was getting a few funny looks from the kids and I also noticed that my face was becoming numb on the right side. I went to the school nurse who promptly proceeded with some nuerological tests (smile, stick your tounge out, etc...) and the next thing I knew I was getting in an ambulance. The pain from my eye caused my blood pressure to spike to 158/108 by the time I reached the hospital. 
MS is a disease of leisons that affect different parts of the brain and sometimes the spinal cord. A great deal of my leisons are in the area of the brain that affects my vision and sometimes stress and other medications can trigger these bouts of trouble. After two and a half days in the hospital my doctor told me that a combination of medicine changes and rest would help me.  The nerve damage in my eyes is not reversable however I can help it slow down by resting more and possibly changing some of my medications.
If you know me very well rest is not a word that is common to me. Obviously being able to sense this, the doctor has ordered me to stay home from school for at least this week. I have to say this was a hard blow for me to take. I feel a great responsibility to my students and we will begin state testing in just one week.  I am going to follow the doctor's orders and I will have a few more tests and doctor visits while I am off this week, however I WILL NOT let this get me down.
I was able to enjoy tonight with my daughter Lyndsey at her 8th grade Formal. I have been planning this with a group of parents for a few months and having to be in the hospital the week of the event was not easy! I woke up this morning not knowing if I would be able to make it but God got me through.  I am thankful though for the time that I can spend with my kids right now enjoying these moments. The theme of her Formal was "You're Gonna Miss This" I think that was very fitting. I am learning to enjoy the good days and push through the hard days. Please keep praying for our family and our doctors. One last thing to remember in this update, MS is a strange disease, the patient may look great on the outside but the fight is on the inside.

Vacation?

Spring break is almost over. I was hoping for a trip this year but I got to go to Nashville to see the doctor and to Paducah for three days of steroid infusions instead. Oh well maybe next year. I was looking back and I have spent fall break, Christmas break and now this break with a needle in my arm. This time I have started to have trouble with my right eye. Hopefully the steroids will do their job. This round was a little tougher than the other two but each time I learn a little more about what I can do for myself to make it not so bad. I am determined to keep learning what I can do to make MS tolerable. The good news is that the doctor told us that younger patients have a brighter outlook as far as not becoming disabled later due to advances in medicine. Please continue to pray not just for me but for my husband and my children who have to go through this too. I am so thankful everyday for all of my blessings.

It's National MS Awareness Week!

I'm sure most of you, unless you have already had some dealings with MS in the past were not aware that this week is National MS Awareness Week, so hug someone with MS, just not too hard! It's been a long couple of weeks for me. We knew that I would be having my ovary removed soon and had planned for it to be this week however when I went in last week to get the pre op lab work done, I was in so much pain that they decided to take out the ovary a week earlier. Last Thursday I had it removed and in the process it was discovered I only had one ovary, EVER! Ha! I have had two kids and never knew. So now in addition to the MS, I am going to work through hormones. I know I can do all of this and I try really hard not to complain about my situation because there is someone, somewhere who is in a much worse condition than I....but I have to be completely honest,  that today, I locked myself in the bathroom, closed my eyes really tight and asked God to please just make my body normal when I unlocked the bathroom door. It didn't work. I try to be optimistic but I get frustrated sometimes and then I feel guilty.
What I have found that really makes me happy and helps me keep things in perspective is my students. I am not just saying that to earn brownie points with anyone, the kids really make me happy.  I love being with them, I just wish I had more energy sometimes! Several of the kids in 4th grade have approached the librarian and asked her if they could start a book club, she agreed and I asked to be a part of the club too.  I love being a part of something that is not necessarily a requirement and that kids are doing out of sheer love of an activity. I also LOVE to read and find it relaxing.  I think that things like this are what will help me through the rough spots. Of course I have my family, my husband,  parents, in-laws and wonderful children but, I have to say that my students have really been a high point in my life this year. I know that they don't really know it  but maybe in ten years I can share with one or two of them how much they helped me. 

Remember, the one thing about MS is, those of us who have it look like everyone else, we are just fighting a battle that no one else can see.  

Just an update

It has been a couple of months and I wanted to catch up with what has been going on. I first want to say that I appreciate, more than you all could ever know the prayers and thoughts and just those of you who continue to check in on me. This is a battle even if the symptoms are not always visible and if I have learned anything over the past few months is it that. I can certainly feel all of the prayers and I know that gets me through many days that I couldn't otherwise.

I had a solu medrol infusion for three days in December and while the side effects lasted a little longer than the first treatment, I have gotten over them and overall had been feeling well until about a week and a half ago.  I have been learning and self journaling about things that cause my symptoms and pain to be worse and weather changes have certainly been one of them. As you can imagine, all of this weather has wreaked havoc on me! I was also feeling some pretty severe pain in my lower abdomen, and, since this is all new to me, Aaron and I thought at first that it could just be related pain but eventually it got to the point where I felt as if I could pass out. After a LONG night in the E.R. they told us they found a cystic mass in my pelvis and sent us to a Gyno in Paducah where I was told I will be having my right ovary removed soon.

Over all, as far as the MS goes, I am tolerating the Rebif injections that I give myself three times a week and the greatest amount of pain that I have is in my legs and somedays I feel like I can't make them work to get out of bed, but I love my job and being with my students, even on the bad days is the best medicine in the world. Please continue to keep us in prayer, not just  me but my husband and children as well. They work very hard to help me so that I can have a little rest time.

Remember, March is around the corner and is national MS month, many dont know this, but just like Pink is the color for Breast Cancer and Red is for Heart Health, ORANGE is the official color for M.S. wear orange in support of a cure for this painful disease!