It has rained and rained and rained and rained, BUT everything is green and spring is here! We have lived outside more than we have inside. The woods behind our house have thickened and our crazy cat is enjoying hunting all of the new wildlife that is out there. We have been incredibly busy...
Anabelle- Wow! She is counting down the days until she is officially a 1st grader. She is reading beautifully, and I am pretty sure she is going to be a bookworm like I am. She is really into softball; she wants to practice everyday and can't wait for games. She has become quite the social bug. Everywhere we go, we see people who know her. I might be biased, but she is beautiful. Josh is in for some trouble in a few years.
Jack- Hilarious. Seriously, the kids is really random and just funny. He is quirky and just Jack. He still loves little action figures and tries to smuggle them into school whenever he can. He busts out dancing all of the time. Sweet, sweet, sweet, child.
Russell- Russell. This kid is giving me a run for my money. He is built like a fire hydrant. Tough as nails. Strong willed. Love bug- seriously, this kid can do some hardcore snuggling and loving. He is going to be a fierce competitor when he is older. I am already breaking up wrestling matches in the living room.
Me- Doing great. Seriously soaking up the fullness of my life and trying to remember to relax and just live. I am up to my neck in laundry but oh how I would hate it if I had none. That would mean that 4 other very special people around me weren't around. We are at the end of school and really, things are hectic. I can't even look at my calendar without feeling overwhelmed. I had to create a chart just to coordinate my children's teacher appreciation themes and gifts for their teachers. I am busy planning tennis camps, Vacation Bible School, family vacation, and next month's meals. I am not being sarcastic when I say that I wouldn't trade it for a million bucks.
Josh- I am pretty sure has become with taking down limbs off of trees in our yard. He and a neighbor have a small obsession with these rope saws and have started taking down everything. I swear it might be his new hobby. He asked for a rope saw for father's day...
MS- Should this even have a category of it's own. Yeah, probably. I still look at Josh sometimes and realize he is magenta pink. From the tips of his ears to the tops of his feet. The Tecfidera seems to be working. He feels pretty great and seems to be trucking along. Throw in a little fatigue here and there, and this pretty much sums up our MS woes right now.
In a recent conversation, it was brought up that medicine and treatment has come a long way. Something that always comes up is, "Think about how far the medicine has come and how much better it is." I am very grateful for this, but in the back of my mind, I always think.... "But the medicine is so new... what is it doing to his body that we don't know about? What will the impact of the medicine in 5 years? 10 years?" Just something to think about...
We recently went to a wedding outside of Nashville. We had TWO WHOLE NIGHTS of kid-free time. We rode around MTSU (our alma mater) and hung out with our friends. I don't think I have slept that much in 2 years. We slept late and went to bed early. We are so exciting...
A Girl from MS and a Boy with MS
A blog about living each day to the fullest, playing the game with Multiple Sclerosis, and WINNING!
Monday, April 27, 2015
Monday, February 23, 2015
Winter Weather in the South... And Yes, I actually need milk!
We go through roughly 3 gallons of milk a week, which means 12 gallons a month. When Josh and I go to the store and ask each other what to get, I can almost guarantee you that milk will be the first thing said. (Or wine... depending on how the day is going:)
Why am I talking about milk? Most of you know, but some of you may not. I realize that I have people that read this blog who live all over the world. In the US, in the South, when the threat of winter weather is mentioned, Southerners feel the need to rush to the store and buy all of the milk and bread in sight. (Toilet paper, too!) Look, we don't get winter weather as often as others. I don't even think the town that I live in has a snow plow. Should we? Heck no. Good grief! Saturday I was wearing flip flops. I have gotten a sunburn in February before!! I feel that it would be a waste of resources. Last year I was stranded on the interstate and had to abandon my minivan to walk to a hotel. Driving on an inch of ice in a Honda Odyssey was not my forte'. After 3 days, the ice was gone. Back to 50 degree temperatures and thoughts of the 4 hour drive South to the beach.
After last year's forecast bust that basically shut down half of Alabama, people around here are cautious. Personally, I am glad and agree that we should be cautious. Schools are opening late, closing early, and closing completely. I remember sitting at a restaurant trying to get some food after walking about a mile from my van. People were trickling in and looking rather rundown. A couple who was traveling through asked where the closest place was to buy chains for their car. Everyone just fell out laughing. They weren't trying to be mean, it was just that chains for snow are not the most common things for people in Central Alabama.
With all of this being said, I am going home to get ready. Kind of like doomsday prep people. Last time I was stuck, I did not have socks, scarf, hat, full tank of gas, blanket, or all of those things your parents and grandparents tell you to keep. I refuse to go down like that again. In fact, if it happens again this year, my best friend at work and I have a plan. I refuse to drive my new car in this and run the chance of a wreck, so we are booking a hotel room online, walking to the gas station for candy and "festive beverages", and we are having a mini vacation at a hotel. I have full confidence that Josh can get to our kids to get them. (It took him 8 hours to get to daycare and back last year.)
The only problem is... I actually need milk and bread!!!!! We are out. I am sure the people at the grocery store will think I am stocking up for the store. When really, I do need 3 gallons of milk and 2 loaves of bread. I am trying to feed three growing children! :)
Why am I talking about milk? Most of you know, but some of you may not. I realize that I have people that read this blog who live all over the world. In the US, in the South, when the threat of winter weather is mentioned, Southerners feel the need to rush to the store and buy all of the milk and bread in sight. (Toilet paper, too!) Look, we don't get winter weather as often as others. I don't even think the town that I live in has a snow plow. Should we? Heck no. Good grief! Saturday I was wearing flip flops. I have gotten a sunburn in February before!! I feel that it would be a waste of resources. Last year I was stranded on the interstate and had to abandon my minivan to walk to a hotel. Driving on an inch of ice in a Honda Odyssey was not my forte'. After 3 days, the ice was gone. Back to 50 degree temperatures and thoughts of the 4 hour drive South to the beach.
After last year's forecast bust that basically shut down half of Alabama, people around here are cautious. Personally, I am glad and agree that we should be cautious. Schools are opening late, closing early, and closing completely. I remember sitting at a restaurant trying to get some food after walking about a mile from my van. People were trickling in and looking rather rundown. A couple who was traveling through asked where the closest place was to buy chains for their car. Everyone just fell out laughing. They weren't trying to be mean, it was just that chains for snow are not the most common things for people in Central Alabama.
With all of this being said, I am going home to get ready. Kind of like doomsday prep people. Last time I was stuck, I did not have socks, scarf, hat, full tank of gas, blanket, or all of those things your parents and grandparents tell you to keep. I refuse to go down like that again. In fact, if it happens again this year, my best friend at work and I have a plan. I refuse to drive my new car in this and run the chance of a wreck, so we are booking a hotel room online, walking to the gas station for candy and "festive beverages", and we are having a mini vacation at a hotel. I have full confidence that Josh can get to our kids to get them. (It took him 8 hours to get to daycare and back last year.)
The only problem is... I actually need milk and bread!!!!! We are out. I am sure the people at the grocery store will think I am stocking up for the store. When really, I do need 3 gallons of milk and 2 loaves of bread. I am trying to feed three growing children! :)
Tuesday, February 10, 2015
Just a Bathroom...
It's Tuesday! My mama and daddy always took a survival approach to Monday. My daddy used to say for us just to make it through the day and get back home to relax. Basically, just survive Monday and yesterday, that I did just that. (Josh will actually make fun of me for referring to my parents as Mama and Daddy. I actually say it more like Diddy. My brother is 37 and called them both Mama and Daddy until the day they died. Maybe it is a Southern thing??)
I had a doctor's appointment and had blood work done yesterday. The appointment was at 3:30 so I was literally running out of my classroom to beat school traffic. There are a ton of things that teachers are weird about due to their schedule. Every appointment I make is after 3:00. If I need to use the restroom during the day, my options are 11:30 and 1:30. No joke- I basically train my bladder. Anyways... I got to the doctor at 3:20 and just sat in my car. I told myself, "Lori, you can do this. It is just a bathroom." Cue the irrational fears...
You see, I break out in a sweat and basically lose my mind when I step off of the elevator from the parking garage and walk down the hallway to get to another set of elevators. Heavy breathing? Check. Cold Sweats? Check. Thoughts of turning around and running? Check. Kick in the gut? Check.
Have you ever had a moment when you tell someone or remember, "I know where I was when that happened?" I had a student turn in a presentation on Princess Diana. I said to her, "I know exactly where I was when I found out she died. I still remember who I was around, the smells, and what I was doing." I remember being devastated and crying.
MS has caused me to be scared of a bathroom. No joke. For me, every time I enter that hallway and walk past that bathroom, I remember everything about Josh's MS diagnosis. I remember the wet, rainy day. I remember walking down that hallway and waiting to be called. I remember what the doctor was wearing and who the nurse was and what she was wearing. I remember being asked to leave the room while they did a spinal tap. I remember sitting back in the waiting room and the lady at the front standing up and basically shouting at me asking if I was alright. (Apparently I wouldn't respond.) I remember standing and calmly walking to the door, then running down the hallway into the bathroom. I sat down on the floor and couldn't breath or move. I thought about calling my brother, but it was like I was paralyzed. I am not sure how long I sat on that bathroom floor. I remember several people knocking on the door trying to come in. I even remember thinking (and this is totally a southern thing) that my mother would tell me to straighten up and get my act together. You don't do this in public. Fix your makeup. Put on some lipstick. You are going to wrinkle your clothes. What would people think?
It's funny, walking down that hallway yesterday, I was basically running. I am 6 feet tall, so walking fast is a slow jog for most. I got behind a little old couple and basically stopped in my tracks right in front of that bathroom. I actually chuckled. How ironic I would be stuck right in front of this bathroom? And then I thought, "Good grief! Who in their right mind is actually afraid of a bathroom? I am 32 years old, for crying out loud!" On the way back from my appointment, I tried the door for the bathroom. I thought maybe if I just go in I won't freak out so much when I walk by. (And I am going to have to walk by the door again. It is pretty much a given.) Door was locked. I breathed a sigh of relief and basically ran to my car. I was safe until the next time.
Irrational fear? Yes. Irrational anxiety? Yes. Let's face it. I just wrote that I am afraid of a bathroom and hallway. Does life do this to you? I think so. Does a diagnosis do this to you? Yes. Absolutely. MS has triggered so many quirks and scary feelings for me.
I think about what my mom would tell me. I can't call her or talk to her, but I can imagine her response. I can hear my mother saying right now, "Good grief Lori, it is just a bathroom." But, I can also hear her say, "I have been there, and I understand. It is not "just a bathroom" to you."
I had a doctor's appointment and had blood work done yesterday. The appointment was at 3:30 so I was literally running out of my classroom to beat school traffic. There are a ton of things that teachers are weird about due to their schedule. Every appointment I make is after 3:00. If I need to use the restroom during the day, my options are 11:30 and 1:30. No joke- I basically train my bladder. Anyways... I got to the doctor at 3:20 and just sat in my car. I told myself, "Lori, you can do this. It is just a bathroom." Cue the irrational fears...
You see, I break out in a sweat and basically lose my mind when I step off of the elevator from the parking garage and walk down the hallway to get to another set of elevators. Heavy breathing? Check. Cold Sweats? Check. Thoughts of turning around and running? Check. Kick in the gut? Check.
Have you ever had a moment when you tell someone or remember, "I know where I was when that happened?" I had a student turn in a presentation on Princess Diana. I said to her, "I know exactly where I was when I found out she died. I still remember who I was around, the smells, and what I was doing." I remember being devastated and crying.
MS has caused me to be scared of a bathroom. No joke. For me, every time I enter that hallway and walk past that bathroom, I remember everything about Josh's MS diagnosis. I remember the wet, rainy day. I remember walking down that hallway and waiting to be called. I remember what the doctor was wearing and who the nurse was and what she was wearing. I remember being asked to leave the room while they did a spinal tap. I remember sitting back in the waiting room and the lady at the front standing up and basically shouting at me asking if I was alright. (Apparently I wouldn't respond.) I remember standing and calmly walking to the door, then running down the hallway into the bathroom. I sat down on the floor and couldn't breath or move. I thought about calling my brother, but it was like I was paralyzed. I am not sure how long I sat on that bathroom floor. I remember several people knocking on the door trying to come in. I even remember thinking (and this is totally a southern thing) that my mother would tell me to straighten up and get my act together. You don't do this in public. Fix your makeup. Put on some lipstick. You are going to wrinkle your clothes. What would people think?
It's funny, walking down that hallway yesterday, I was basically running. I am 6 feet tall, so walking fast is a slow jog for most. I got behind a little old couple and basically stopped in my tracks right in front of that bathroom. I actually chuckled. How ironic I would be stuck right in front of this bathroom? And then I thought, "Good grief! Who in their right mind is actually afraid of a bathroom? I am 32 years old, for crying out loud!" On the way back from my appointment, I tried the door for the bathroom. I thought maybe if I just go in I won't freak out so much when I walk by. (And I am going to have to walk by the door again. It is pretty much a given.) Door was locked. I breathed a sigh of relief and basically ran to my car. I was safe until the next time.
Irrational fear? Yes. Irrational anxiety? Yes. Let's face it. I just wrote that I am afraid of a bathroom and hallway. Does life do this to you? I think so. Does a diagnosis do this to you? Yes. Absolutely. MS has triggered so many quirks and scary feelings for me.
I think about what my mom would tell me. I can't call her or talk to her, but I can imagine her response. I can hear my mother saying right now, "Good grief Lori, it is just a bathroom." But, I can also hear her say, "I have been there, and I understand. It is not "just a bathroom" to you."
Monday, February 9, 2015
Conversations with Grandparents
My kids have been jipped. (Or gypped depending on your choice of dictionary.) While most children their age have two sets of grandparents, they have one. Russell has never had two sets. Both of my parents had passed and probably didn't dream I would have 3 children. Jack does not remember my mom, so he has basically only had one set. Now, I will tell you, the grandparents they have (Josh's parents) are the best. Do they spoil them? Yes. Do they always put them first? Yes.
This weekend, the grandparents came to town for Anabelle's birthday. She is now 6. First thing out of her mouth on Friday morning was, "I grew! I grew! Did I grow? I feel like it." My MIL and I took her and 3 other little girls for pedicures. We picked each one of them up, went to the nail shop, stopped at Steak n' Shake, and finished it off with play time at our house. Chaotic? Yes. But I will say, I am so glad we did this instead of a large class party. The girls had a blast. I had fun, too. Although, we listened to Taylor Swift nonstop, full blast. I like Taylor, but not on constant repeat!
There is no question that life with 3 active children is crazy. A friend sent me a text that said she didn't know how we managed to keep 3 kids alive and well while working full time. You know, sometimes you just do it. You organize, get through the day, and you just make it happen. I will admit that the same thought has crossed through my mind. How do we do it?? I know that each of my children could use more attention. They are not deprived, but a little more one-on-one would not hurt.
This is the part where grandparents come in. I can remember spending time with my Mamaw. Lots of time- probably more time with her than my parents. She was patient, always kind, and always on my side. I can remember my mom getting a little frustrated that I could do no wrong with my Mamaw. I totally get it now.
Grandparents have the time to spend just sitting and talking and playing. What do people always say? They get to have the fun with the kids then give them back. I am grateful for this. Going to my Mamaw's house was special. It was a time that was so different than being at my own house.
For the past week, Jack has been emotional. The type of emotional that is only rational to a 4 year old. Ice in his water cup? Fall out in the floor. Popcorn at 7 in the morning? Fall out in the floor? Crying on and off for 4 hours because your little brother touched your foot? No problem. Jack has it covered.
Well Saturday, Jack had a friend over while I was out for Anabelle's party. Josh said they played great together, but by the time dinner rolled around, Jack was exhausted. Cue the emotional breakdowns. He could not be satisfied. And then it happened. I couldn't hear him cry. He was not weeping in my lap. I was not coming up with rational explanations for irrational breakdowns. After a week of this, I suddenly thought, "Did he run away? Lock himself in the basement?" I found him in his grandfather's lap in the living room. I was on the deck, but I could see them through the window. They were snuggling and talking. Well, Jack was talking and John John was listening. One-on-one time that was much needed. I watched as Jack chattered away and my father-in-law just shook his head. Jack would quit talking and just snuggle. In a minute or two, he would start chatting again, and my father-in-law would continue to listen, shake his head, and smile.
I wonder what they were talking about? I would have loved to be a fly on the wall in that room.
I know as I get older, I have those moments when I think, " I would give anything to ask my Mamaw ________." Or "I wish I knew ____________." I think about how important grandparents are to little ones and how important little ones are to grandparents. The meaningful, one-on-one conversations stick. The kiddos need to be heard, and they know that grandparents will listen. I could always pick up the phone and call Mamaw. She wouldn't say much, just listen. I could always depend on her for the extra one-on-one attention.
Josh and I are kind of grandparents. We have several sweet little dolls that Anabelle has determined are our grandchildren. They "call" us JJ and Lulu. Most mornings before school, Anabelle dresses the dolls and packs them a bag. She then tells Josh what he has to do with them for the day. See, since Josh works from home, she lets him be the babysitter. There have been several mornings that when I leave the house, Josh is having a cup of coffee on the couch surrounded by dolls and bags. He repeats the instructions back to Anabelle, and if he gets one thing wrong, the process starts over. I made the mistake of carrying one of her babies the wrong way at church. I received a scolding worthy of an Oscar. I want to tell her, "Honey, we are pros at this. Don't worry. Have you seen us change a diaper in a parking lot in less than 30 seconds?" I wonder how many times the grandparents have wanted to say that to us??
Happy Monday!
I am so thankful for Alabama weather today! I woke up and it was 57 degrees! The sun is supposed to start shining around lunch. Jack keeps asking me if it is summer... (You can only imagine the emotions when I tell him we have a few months to go!)
Lori
This weekend, the grandparents came to town for Anabelle's birthday. She is now 6. First thing out of her mouth on Friday morning was, "I grew! I grew! Did I grow? I feel like it." My MIL and I took her and 3 other little girls for pedicures. We picked each one of them up, went to the nail shop, stopped at Steak n' Shake, and finished it off with play time at our house. Chaotic? Yes. But I will say, I am so glad we did this instead of a large class party. The girls had a blast. I had fun, too. Although, we listened to Taylor Swift nonstop, full blast. I like Taylor, but not on constant repeat!
There is no question that life with 3 active children is crazy. A friend sent me a text that said she didn't know how we managed to keep 3 kids alive and well while working full time. You know, sometimes you just do it. You organize, get through the day, and you just make it happen. I will admit that the same thought has crossed through my mind. How do we do it?? I know that each of my children could use more attention. They are not deprived, but a little more one-on-one would not hurt.
This is the part where grandparents come in. I can remember spending time with my Mamaw. Lots of time- probably more time with her than my parents. She was patient, always kind, and always on my side. I can remember my mom getting a little frustrated that I could do no wrong with my Mamaw. I totally get it now.
Grandparents have the time to spend just sitting and talking and playing. What do people always say? They get to have the fun with the kids then give them back. I am grateful for this. Going to my Mamaw's house was special. It was a time that was so different than being at my own house.
For the past week, Jack has been emotional. The type of emotional that is only rational to a 4 year old. Ice in his water cup? Fall out in the floor. Popcorn at 7 in the morning? Fall out in the floor? Crying on and off for 4 hours because your little brother touched your foot? No problem. Jack has it covered.
Well Saturday, Jack had a friend over while I was out for Anabelle's party. Josh said they played great together, but by the time dinner rolled around, Jack was exhausted. Cue the emotional breakdowns. He could not be satisfied. And then it happened. I couldn't hear him cry. He was not weeping in my lap. I was not coming up with rational explanations for irrational breakdowns. After a week of this, I suddenly thought, "Did he run away? Lock himself in the basement?" I found him in his grandfather's lap in the living room. I was on the deck, but I could see them through the window. They were snuggling and talking. Well, Jack was talking and John John was listening. One-on-one time that was much needed. I watched as Jack chattered away and my father-in-law just shook his head. Jack would quit talking and just snuggle. In a minute or two, he would start chatting again, and my father-in-law would continue to listen, shake his head, and smile.
I wonder what they were talking about? I would have loved to be a fly on the wall in that room.
I know as I get older, I have those moments when I think, " I would give anything to ask my Mamaw ________." Or "I wish I knew ____________." I think about how important grandparents are to little ones and how important little ones are to grandparents. The meaningful, one-on-one conversations stick. The kiddos need to be heard, and they know that grandparents will listen. I could always pick up the phone and call Mamaw. She wouldn't say much, just listen. I could always depend on her for the extra one-on-one attention.
Josh and I are kind of grandparents. We have several sweet little dolls that Anabelle has determined are our grandchildren. They "call" us JJ and Lulu. Most mornings before school, Anabelle dresses the dolls and packs them a bag. She then tells Josh what he has to do with them for the day. See, since Josh works from home, she lets him be the babysitter. There have been several mornings that when I leave the house, Josh is having a cup of coffee on the couch surrounded by dolls and bags. He repeats the instructions back to Anabelle, and if he gets one thing wrong, the process starts over. I made the mistake of carrying one of her babies the wrong way at church. I received a scolding worthy of an Oscar. I want to tell her, "Honey, we are pros at this. Don't worry. Have you seen us change a diaper in a parking lot in less than 30 seconds?" I wonder how many times the grandparents have wanted to say that to us??
Happy Monday!
I am so thankful for Alabama weather today! I woke up and it was 57 degrees! The sun is supposed to start shining around lunch. Jack keeps asking me if it is summer... (You can only imagine the emotions when I tell him we have a few months to go!)
Lori
Friday, February 6, 2015
Interesting Read...
I read a blog called Wheelchair Kamikaze. I enjoy the read and all of the information that is presented. I found the post for today very interesting. There is also an older post that talks about a current scam that has happened with MS research. I really feel sad and hurt for those who were a part of it. I will admit that when Josh was diagnosed I developed a sense of desperation and urgency to try anything to fix him and make him better. In the South, people might refer to this as showing all of my "crazies". And believe me, everyone has all kinds of "crazies"!! Do I still feel that way? Every. Single. Day. of. my. life. I would do almost anything to "fix" him and make him free of MS. Eleven years of my life have been spent loving this boy and living a life with him. Who wouldn't feel like this? In the words of my mother who told me this every time I hurt or I was upset, "I wish that it were me. I wish that I could take it from you. I would."
We have had so many people tell us of studies and research and diets and lifestyles and connections we should make, but really, it is all deeper and most of the time: Scary! and frustrating that it seems on the surface. I have always been a little uneasy about charities and organizations that get so big that they lose the real meaning behind their purpose. I am not singling any one particular organization out, just generalizing.
Here is a link to Wheelchair Kamikaze's blog. He posted this today.
http://www.wheelchairkamikaze.com/2015/02/national-ms-society-fail-repeatedly.html
Happy Friday!
Lori
Tuesday, February 3, 2015
To do the Walk or Not do the Walk... That is the Question.
Every week, I receive something from our local chapter of the MS Society. I am grateful for all they do, and I try to support them in any way I can. This past Christmas, we participated in MS Santa. What a humbling experience! Instead of shopping for toys for young ones, we shopped for clothes and household necessities for adults that are the age of our parents. They asked for things like towels and household cleaning items. Things that I buy and really do not think about. Anabelle asked why we were buying something for someone with MS when our Daddy has MS. I tried to explain that you give when you can because one day you may need something, and hopefully someone will share with you what you need. I like to get involved in ways like this. I think it is great and more personal that writing a check.
Josh has decided that he does not want to do the MS Walk. He said that he might do the walk with just the 5 of us, but has stressed that he really doesn't want to make a big deal out of it like we did last year. I don't argue. I respect his opinion and his wishes. He is a simple guy. No streamers or fireworks, just the simple kind who doesn't like the attention. We have talked about it a good bit. I think it is hard for Josh to see the many other people there who have MS. MS is different for everyone. Josh is pretty much fine as far as the physical aspect. Someone else his age at the walk might be in a wheel chair. Let's be honest. It is hard to see others whom are struggling more or have been hit harder than you have. You can't help but think- When will that be us? When will that be Josh? How long until the next bomb goes off on this MS journey?
The kids want to walk. I would be lying if I said it was solely because of the cause. I think they enjoyed the balloons and face painting. Jack also hit the refreshment table- A LOT. We were able to raise close to $1600.00 last year. I was overwhelmed with the support we received from family and friends. I feel guilty for not participating. For not showing up and supporting something that is so dear to my heart. The MS Walk is fun and uplifting, but it is also equally hard and tough to take in. I don't know. I guess it is hard to explain.
I think this year we will sit it out. I am hoping to give back equally, but I think we will give in a different way this year.
Josh has decided that he does not want to do the MS Walk. He said that he might do the walk with just the 5 of us, but has stressed that he really doesn't want to make a big deal out of it like we did last year. I don't argue. I respect his opinion and his wishes. He is a simple guy. No streamers or fireworks, just the simple kind who doesn't like the attention. We have talked about it a good bit. I think it is hard for Josh to see the many other people there who have MS. MS is different for everyone. Josh is pretty much fine as far as the physical aspect. Someone else his age at the walk might be in a wheel chair. Let's be honest. It is hard to see others whom are struggling more or have been hit harder than you have. You can't help but think- When will that be us? When will that be Josh? How long until the next bomb goes off on this MS journey?
The kids want to walk. I would be lying if I said it was solely because of the cause. I think they enjoyed the balloons and face painting. Jack also hit the refreshment table- A LOT. We were able to raise close to $1600.00 last year. I was overwhelmed with the support we received from family and friends. I feel guilty for not participating. For not showing up and supporting something that is so dear to my heart. The MS Walk is fun and uplifting, but it is also equally hard and tough to take in. I don't know. I guess it is hard to explain.
I think this year we will sit it out. I am hoping to give back equally, but I think we will give in a different way this year.
Wednesday, January 21, 2015
Finding Support and Figuring Things Out
Well, it has basically been a year since the official MS diagnosis. When looking back on 2014, it was a very bittersweet year. Professionally, Josh had an incredible year. His performance numbers, customer relationships, and overall productivity was nothing short of phenomenal. (Yes, I am bragging.) For lack of better terms, he killed. I am pretty proud of him. We have A TON going on all of the time and sometimes just finding clean clothes to wear can be an incredible accomplishment in our house. When kids are sick, he is usually the one to take care of them while he works from home. Even though I come home to kids in PJ's covered in markers, they are happy, loved, and pampered by him and he still manages to get his work done. For me, professionally, I am so happy with my work. I love the classes that I teach and my students could not be better. I teach semester classes, so I have just started a new semester with 100+ new students. I can't stress how much loving your job can make such a difference in your life. I used to do pharmaceutical sales. When I came back to the classroom I really felt that teaching would be my lifelong job. I just hope I can keep on doing what I am doing.
Our kids, our sweet kids, are doing great. Jack will be 4 on Sunday. He will have a minion cake, balloons, and every minion present known to man. Anabelle will be 6 next month. We are trying something different. She is taking 3 friends for pedicures followed by lunch at Steak n' Shake. Russell's birthday is in July, although I must have written the wrong birthday down on his daycare sheet because this past Friday, his teachers celebrated his 2nd birthday. The kid was on cloud nine. Heck, we even sang happy birthday to him when we all ate dinner. Sometimes the 3rd child needs extra attention. He had no clue really what was going on so what could it hurt?
Josh is managing his Multiple Sclerosis the best that he can. With anything, there are good days and bad days. He is still taking Tecfidera and is going in every 4 months for blood work to make sure everything is where it needs to be. With the first recorded death of a person who was taking Tecfidera, our doctor is being extremely careful. Isn't that the scary part about medicine? Sometimes the side effects of the medicine are scarier than the disease you are treating. We still firmly believe that the medicine is the best option for Josh at this point.
I have a co-worker who was recently diagnosed with MS. Before his diagnosis, we talked about his symptoms and what he was experiencing. I really though it was MS but hoped like crazy that it wasn't. I saw him today, and yes, it is MS. He is seeing the same doctor as Josh. We talked a little this morning about the many things that people in general don't know about MS. We talked about finding support, balancing work, handling stress, and all of the things people with MS have to pay extra attention to. Josh and I are still learning ways to deal with all of these things. We both understand that if our kids are bouncing off of the walls going crazy, Josh often times needs a time out from the chaos. He might go sit on the deck in the quiet, disappear downstairs to the man cave or find a place to get some quiet time. We are in agreement that if something coming up might be too stressful or crazy, we just say thanks but no thanks. Josh discussed with Dr. Emily the importance of saying no. We are both working on not over committing ourselves. I usually do several committees at our church and I have had to take a step back. He is learning to not overextend himself. Welcome to the life of balancing an auto-immune disease and life.
I recently reached out to the Birmingham MS Society to get some information on support groups for caregivers and spouses. I was a little disappointed. There are only two groups that are not very specific. Maybe I should organize something??? I think that no matter if you are a "seasoned" MS'er or a newbie, anyone can benefit from talking and sharing experiences. There is a camp for kids whom have parents with MS. I can't wait until our kids can attend! What a great way to connect with others whom are experiencing the same situations as your family!
I am adding some pictures... Pretty random. We celebrated New Year's with Mardi Gras props. The Dollar Tree didn't carry New Year's Eve stuff...
Our kids, our sweet kids, are doing great. Jack will be 4 on Sunday. He will have a minion cake, balloons, and every minion present known to man. Anabelle will be 6 next month. We are trying something different. She is taking 3 friends for pedicures followed by lunch at Steak n' Shake. Russell's birthday is in July, although I must have written the wrong birthday down on his daycare sheet because this past Friday, his teachers celebrated his 2nd birthday. The kid was on cloud nine. Heck, we even sang happy birthday to him when we all ate dinner. Sometimes the 3rd child needs extra attention. He had no clue really what was going on so what could it hurt?
Josh is managing his Multiple Sclerosis the best that he can. With anything, there are good days and bad days. He is still taking Tecfidera and is going in every 4 months for blood work to make sure everything is where it needs to be. With the first recorded death of a person who was taking Tecfidera, our doctor is being extremely careful. Isn't that the scary part about medicine? Sometimes the side effects of the medicine are scarier than the disease you are treating. We still firmly believe that the medicine is the best option for Josh at this point.
I have a co-worker who was recently diagnosed with MS. Before his diagnosis, we talked about his symptoms and what he was experiencing. I really though it was MS but hoped like crazy that it wasn't. I saw him today, and yes, it is MS. He is seeing the same doctor as Josh. We talked a little this morning about the many things that people in general don't know about MS. We talked about finding support, balancing work, handling stress, and all of the things people with MS have to pay extra attention to. Josh and I are still learning ways to deal with all of these things. We both understand that if our kids are bouncing off of the walls going crazy, Josh often times needs a time out from the chaos. He might go sit on the deck in the quiet, disappear downstairs to the man cave or find a place to get some quiet time. We are in agreement that if something coming up might be too stressful or crazy, we just say thanks but no thanks. Josh discussed with Dr. Emily the importance of saying no. We are both working on not over committing ourselves. I usually do several committees at our church and I have had to take a step back. He is learning to not overextend himself. Welcome to the life of balancing an auto-immune disease and life.
I recently reached out to the Birmingham MS Society to get some information on support groups for caregivers and spouses. I was a little disappointed. There are only two groups that are not very specific. Maybe I should organize something??? I think that no matter if you are a "seasoned" MS'er or a newbie, anyone can benefit from talking and sharing experiences. There is a camp for kids whom have parents with MS. I can't wait until our kids can attend! What a great way to connect with others whom are experiencing the same situations as your family!
I am adding some pictures... Pretty random. We celebrated New Year's with Mardi Gras props. The Dollar Tree didn't carry New Year's Eve stuff...
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