Monday, May 19, 2014

So Much To Talk About

This is going to be a long post. First of all, we survived Anabelle's preschool graduation with our hearts still intact! Major accomplishment on our part. She was "Rapunzel" in the skit and did an awesome job on her speaking parts. Jack's class performed a few songs. He was a hoot! He started dancing as soon as his feet hit the stage. He sang and really enjoyed himself. Every minute or so, he would wave and yell hello to us. Russell came through on a wagon. They introduce the babies and send them back for naps. He wasn't sure what was going on, but he looked oh so cute making an entrance.

Jack spotted us while walking to the stage (I don't know why his eyes look crazy...??)

Anabelle making her way to receive her "diploma"

The night of her graduation, we attended a dinner that honored a friend of ours for being a business leader and a leader in the community. The focus of the night was really on the fundraising efforts of the leadership class and their accomplishments. The group of leaders raised money for MULTIPLE SCLEROSIS. As a whole, they raised over $101,000 dollars! Wowzers! Kinda puts our $1400 for the walk to shame:)

Here are some things about the dinner that made me think...

1. I don't like for Josh to see how the disease has progressed in others and the impact it has had on them, but at the same time, we need, want, and really ache sometimes to hear other peoples' stories and the way MS has treated them. Let me clarify that the impact MS has on people is not shameful or something to be embarrassed about or something to hide. MS can be cruel, and it doesn't pick and choose. Sometimes, we tend to compare ourselves to others who have the disease. This can be tricky... no two cases of MS are alike. Also, things have changed so rapidly over the years... this really impacts data and numbers, and presentations of MS. Josh tends to compare himself to others which really vamps up the what ifs and oh crap- I am next feelings. I guess I just want to shield him from anything that will cause him hurt, pain, depression, or anything to cause him to fear his future. I am never going to accomplish this, but it would definitely be on my list of super powers to have. In fact, in our Sunday School lesson we had to list things we strive to be perfect in. I guess I should add this to my list.

2. The guest speaker was great. His name is Heath Campbell. I think Josh took away a great deal from his message. Some of his details of his experience with MS were scary, though.At one point, MS took him from being the best at his profession to being the worst and eventually caused him to be laid off. (He is happily employed now:) At the same time, his speech and story were realistic, which I think is very important. He has overcome so much adversity and really has a beautiful outlook and attitude about his life and the way he chooses to live. He and Josh exchanged numbers and plan on meeting up for lunch. They both see the same doctor, and I truly feel Josh could benefit from a friendship with him.

3. When they introduced some of the members of the leadership class of Birmingham for the 2014 year, It was interesting listening to their tons and tons of activities, involvements, and accomplishments. (These were read when the members came to the front to receive their award.) I really wanted to say to some of them... So, what do you actually do? I am not saying this mean, I just think sometimes we all (myself included) try to impress so many with so much that we don't focus on one thing to make it great. On the flip side, it is great for those members to have accomplished so much. And seriously, I am thankful for their fundraising efforts. Truly grateful...

4. Josh took the lead on talking about his MS with others. When my friend Megan introduced us to others at our table, she just said these are our friends from Sunday School, not these are our friends and he has MS. I think Josh really appreciated that. It gave him an opportunity to own his MS and introduce it on his time. I am trying to be considerate of how and when he shares that he has MS. I shouldn't be the one taking over that conversation.

5. We were told again, by someone older who has MS, that this was a great time to have it. We have been told this A LOT. A fellow blogger commented not long ago that she has been told this, too. This is a tough statement. Last night, I think I came to terms with it. I tried to look at that statement through the eyes of someone who was diagnosed in the past when there were not a lot of options. For many of them, their cases might be too far progressed to do much for them or they have suffered when there weren't many drugs available to help ease the pain of their symptoms. So, looking through the eyes of people with MS who have dealt with it for years or even for a short while, I get it. I get the statement, and I will try to always understand and be grateful for how far the treatments have come. Josh is lucky to have a med that works for him and for the most part, keeps his MS at bay. I will take that statement as a reminder to be grateful for the choices we have today that help make our future look so positive.

4. I cried. Actually, I kinda ugly cried. The speaker choked up, and well, that was all it took for me. I also cried because I was sitting in a room with a random group of people because my husband has MS. And just when I thought I was done crying, I would look at Josh. I would look at others in wheelchairs, whom MS had stripped the ability to walk from. I would look at the screen and see pictures of the speaker with his 3 daughters, and I could easily insert our pictures of our family in and the story would be about us. And just like that, I completely ugly cried at our table. Thank goodness for long hair. I was able to hide it just a bit.

5. On a lighter note, Josh and I should really get out more. (and dress-up) When we left the house, Jack asked if we were on our way to get married again. The little guy is just so sweet...

This week will be crazy busy... graduation at my school, soccer, Uncle Will is coming (WHOO HOO!!) God help him to handle our 3 kids during my outpatient procedure:), and preschool is winding down.

Oh. My. Gosh. I left out the best part of the weekend. Our crazy cat Puddles brought Josh and I a chipmunk that was still alive. Josh opened the front door and immediately shut it. All I hear is "LORI! Look what the cat did." I was confused and opened the door and just shut it right back. The last thing we need is her bringing in a live chipmunk and that sucker getting in my house. Seriously, it freaked me out! I chased her around the yard with a broomstick with 2 kids chasing me screaming at Puddles to drop the chipmunk. I am sure the neighbors got a kick out of this. During the chase, the basset hound (who is almost completely blind) joined in, but couldn't seem to follow the trail we were taking. The chipmunk eventually got away. I kind of felt guilty for not praising Puddles for catching something she stalked for over an hour. I guess I was torn between the cute chipmunk and my cat's pride:)

Happy Monday!

Pictures from the weekend...

Anabelle wanted a lemonade stand. We live in the middle of a cul de sac, so not much traffic. We had a few neighbors come by to grab a cup. Overall, in the eyes of a 5 year old, it was a success.

Sweet Russell- I never thought I would have blonde headed little boys.

Our attempt at a "selfie"

An attempt to get all three kids in a picture... #fail :)

Thursday, May 15, 2014

Graduation Time

My baby is not a baby anymore. Oh sure, I will always look at her as my sweet, chunky baby who changed our lives forever, but today, she is a little girl. Anabelle is graduating preschool. She has been working on songs, facts, poems, and a program for months. She is so proud of herself for memorizing everyone's part and knowing exactly what to do and when to do it. She has been waiting for this day for months, and I have been secretly dreading this day since she started preschool. The great thing is, she is ready for kindergarten and is so excited about going. She wants to learn and meet more friends, and I could not be more proud of her will and excitement to do this.

I think the person it will hit hardest today will be Josh. Anabelle is a Daddy's girl. She knows just what to say or do to make him agree to anything. I have watched her paint his nails, fix his hair, and put makeup on him.  I have watched him dress dolls and talk to them as if they are real. He fixes her hair for school, picks out her clothes, and snuggles with her at bedtime. The first time Anabelle ever went to daycare, Josh was the one to take her in and drop her off. He went to the classroom and placed Anabelle on the floor with some toys. He said as he was leaving, she kept leaning back to watch him go and kinda toppled over. It was all he could do to get to his car. After that, he said he went to a parking lot, parked his car, and cried. I don't see Josh cry much, so I can only imagine what he felt. For those that know him, he can come across as "hard", but man he is a softie when it comes to his kids.

I think about the way I feel right now about Anabelle and the little boys. Now that I have kids, I know how my mom and dad must have felt when we hit milestones. It is bittersweet. So much happiness, but a little bit of sadness that certain phases are coming to an end.

I was thinking on the way to work about "graduation time." Many of my students say that they don't feel like they should be leaving high school. Of course, they are ready to get out of school, but they just can't imagine transitioning to the college phase. I kinda feel like this as an adult. I have to remind myself that I have been out of college for 8 years. I have been married for 7 years. I have 3 children, a dog, a cat, and a mortgage. Wowzers- I am an adult! I feel like since the MS diagnosis, Josh and I have both realized we are in the adult phase. Nothing like an incurable disease to make you realize that 1. You have to make adult decisions 2. You have to plan for the unknown 3. You can't call your parents anymore and expect them to take care of it- You are now the parents, therefore it is your responsibility.  The emotions, the doctor's visits, the meds, the co-pays, all of these things just rub it in that we are "adults." I am excited for Anabelle today. While she might think she is so grown up, she still has so much time to be a child- to learn, explore, dance, sing, and just be Anabelle without the worries or the weight of the world on her shoulders. Congratulations to my baby- little girl- Oh the places she will go, the things she will accomplish, and the lives she will touch!

Dress-up Time


Announcing Russell- This is after she got over not having a baby sister and keeping her spot as the only girl:)

Daddy/Daughter Valentine's Date- Getting her corsage


Wednesday, May 14, 2014

She Did It!

After 2 years of soccer...

I will admit, I almost missed it. Our biggest challenge at soccer is to keep Jack entertained. The baby still sits in a stroller, so he is pretty content. It rained yesterday, so I decided to keep Jack entertained by letting him jump in puddles at the soccer fields. You would have thought I gave him a million minions. He went full force. I was trying to keep an eye on him and the game. Through the fence I see one of the little boys on the team kick the ball. The ball sat right in front of Anabelle and the goal. It seemed like years went by when she finally kicked it in. Josh and I locked eyes across the field from each other. I am not sure you could have found 2 more proud parents there. She was a little shocked herself, but finally started jumping up and down when she realized what she did. I was super proud of her goal, but more proud of her hustle and 110%. And to think I almost stayed home because of the weather:)
Happy Boy in the Mud

Phone Calls x 4

Two days ago, my brother called. This is pretty normal. We talk nearly everyday, but this was different. I was leaving soccer, hopped in the van, and realized I had left my phone in the car. I checked it- 4 missed calls from Will and a message that said, "Call Me."

There are times in your life when you just know something is wrong. It is that gut feeling that radiates to your heart and lets you know that bad news is on the way. One time, when I was in early elementary school, my parents both came to school to pick me up early. When we left, I sat between them in the front seat. (This was back when kids still sat on the "hump" in the car.) They let me know my Aunt Sis had passed away. It was a horrible feeling. Ever since that day, anytime my parents would pick me up together, show up at my house for no reason, or start out a conversation in a certain way, I immediately assumed that something bad had happened.  In my head, I knew that something was wrong just by the missed calls.

"Lori, did you get my email? Pop died today, Lori. Grandaddy let me know that Pop died." I am going to be honest. I was scared it was my Mamaw, who is probably one of the most special people to me in the world. She is suffering from dementia and is confined to a wheelchair now. Yes, she is still here and is my grandmother, but my "Mamaw" has been gone for really almost a year.

Let me explain who Pop was. I grew up on an oak tree lined street. Our neighborhood was filled with children who played together until dark. There was an empty corner lot across the street and down a block. I bet over a thousand wiffle ball games were played there. We rode our bikes to the swimming pool and ball parks in the summers. I even rode my bike across town to get snowcones. All of the neighbors on our street knew each other. To the right of my house, a sweet older couple, the Tarzi's, lived next door. They were like grandparents to me. Everyday, I would ride my hot wheels to their front sidewalk, park, and walk up to their door and ring the doorbell. I would be greeted by them, and I would proceed to make my way to their piano to find the stash of gum they bought for me. I would grab a piece, steal a few hugs and kisses, and be on my way. Every Christmas and Easter, they would come over early in the morning to see our "loot." Every special occasion, my mother would make my picture with them. I have pictures with them with me in everything ranging from recital outfits to homecoming dresses. They came to some of my ballgames. Granny passed away when I was young, and I was devastated. Pop was lost without her, but up until a few weeks ago, he was still living in the house next to my childhood home.

He was a great man. He was active in the community, and I am positive nearly every citizen of Clarksdale knew him. He was a veteran and was involved with youth sports. When the neighborhood took a turn for the worst, he stood his ground and refused to be forced out of his home by not-so-nice neighbors. A few years back, an arsonist in the town burned my childhood home down. They came back the next night to finish the job and burn my playhouse in the backyard. Most of the neighbors I knew growing up had moved, but Pop still remained.

During the phone call with Will, I knew that he was trying to hold it together. My brother is strong. He is a rock in hard situations. He takes charge, and I know I can depend on him. In a span of 4 years, we buried both of our parents, both at the age of 56. I watched him at both of their funerals take the podium and talk about our life with them. When I couldn't even look up to face anyone on those days, he stood tall and spoke about my parents, making sure their story was told in a way that others would understand their love and their life. After Will told me that Pop died, his voice cracked and he couldn't talk. Losing Pop was like someone chipping away at the last pieces left of our childhood on School Street. We have lost a grandfather figure in our life. Although I live 5 hours away, he was still there and still a constant in the life I once knew growing up.

I don't like multiple phone calls in a row from the same person. I cringe. I literally sit in silence trying to prepare myself for the worst. Josh and I have an understanding about phone calls and messages. Don't call multiple times in a row for the little stuff. If you text "call me", make sure it is followed by no big deal or some explanation.

This really wasn't a post about MS or our family, but rather a piece of my childhood slipping away. I hope to leave half of the legacy that Pop did.

Monday, May 12, 2014

75% of the Time

Well, it's Monday. We had an amazing weekend which makes me homesick for my kids and Josh. I am not sure if anyone else experiences this, but sometimes when at work I get homesick to be around my family and do things like laundry. Definitely weird, but it's the truth.

Josh had one of  his annual food shows in Destin, FL, and the kids and I drove down to meet him and stay a couple of nights. We do this every year and always have a blast. This year, my mother-in-law came along. The kids love their "Bea", so they were in heaven with her there. The weather was overcast and a little rainy, but it was the perfect weather for the kids. We didn't have to worry about slathering them in sunscreen every 15 minutes. Russell hit the pool for the first time and loved it. He just floated around in a baby float. Overall, it was a much needed, relaxing time. We drove back on Sunday and had the rest of the day to relax and fall back into a routine. This trip is my Mother's Day present (We stay an extra night), and I would take the time with my family over any gift in the world!

Last night was a great night to sit outside. We watched our cat take down a giant moth. (I swear she has a 4 foot vertical!) I eventually rescued it. The weather was nice and not too humid.
In our time relaxing while the kids were in bed, Josh and I talked about the weekend, and of course, MS.

"Seventy five percent of the time. Seventy-five... that is probably the amount of time I think about having MS." Josh said this out of the blue.

I get it, and I understand. Heck, I probably think about it 50% of the time, and I am not the one with MS. Josh explained that if he was busy, MS wasn't always on his mind, but he said he will be going about his day and suddenly think, "I have MS."

I can't imagine what that is like. I mean, it consumes me, and I am not the one with MS. It is overwhelming, and I know that Josh is overwhelmed. It is painful to me to know that I really can't do much for him- just be his cheerleader and listen and let him have his moments. We talked about the importance of taking it one day at a time. One of the therapists we saw at MS boot camp said something to me that I try to remember- "We don't like to gauge your health and progress strictly by the number of lesions that you have. If you feel good and are enjoying your life, that is what matters most."

Josh also questions the person he is now with MS. Is he as happy? Is he as carefree, easy going as he once was? There are days when I think he is happier. For 6 years, there have been many times when he thought something was going on with his body and was consumed with the unknown of it but couldn't get answers.  Since he has had answers and realized what is "wrong", yes, I think he is happier than he has been as compared to the past year. But, on the flip side, having MS has taken some happiness away (the carefree happiness). I am not sure we will get it back, but I do think it is something that he and I will eventually learn to live with in a way that doesn't consume us.

Have a great Monday. I am thankful for all that I have. It is going to be a week full of soccer, gymnastics, programs, and end-of-the-year work!


Wednesday, May 7, 2014

Would We If We Knew?

Josh and I always play a "game" called Would We If We Knew. It is a game we have created since the MS diagnosis. We don't look at each other and say, "Hey, let's play that game." The game just seems to creep into our conversations. It goes something like this...

-Would we have 3 children if we knew Josh had MS?
-Would we have purchased our new house if we knew Josh had MS?
-Would Josh still be in his old job if he knew he had MS?
-Would we have done more things before the diagnosis of MS? (i.e. travel, check some things off of the bucket list)
-Would we have done __________ differently?

These are just a few of the questions that come up in our little game. Do you ever play this game with yourself or someone? I feel like at some point, everyone does. Sure, we always planned to have children. We were surprised that it happened so soon after we were married, but Anabelle was a blessing. When we found out we were pregnant with Jack, we were amazed that God was trusting us with another sweet baby. AND when Russell popped into the picture, even though we were on the fence about 3, well everything worked out perfect and our little life as a family is complete.

If you do the math, according to some signs and symptoms, Josh had MS when I was pregnant with Anabelle. So, for about 6 years, we lived our life as if MS didn't exist. We had babies, bought houses, changed jobs, moved states, bought vehicles, all the while living with a "silent" MS. Now, since the official MS diagnosis, we are cautious, sometimes overly cautious about decisions we make for our life and our family. I know you can't predict the future, but sometimes you have to make decisions based off of the what ifs.

There have been times when I really sit and think about these questions. A big part of me truly feels that God allowed us to "live" and get "settled" before we received the MS diagnosis. I don't know if this is true, but I can tell you our life would probably be different if we knew then what we know now. I am so grateful for the 6 years that we had unaware of Josh having MS... during those years, we shaped and molded our life that we live today, and we were able to make decisions without a disease to consider.

I do thank God everyday that we are where we are today. While I don't really consider myself "wise" (I mean, you have to be old to be wise, right? :) I do think at this stage, we can handle and deal with the MS better than if it were 6 years ago when we were 25 and 28- basically still newly weds, expecting our first child, and trying to figure out each other's quirks.

I think no matter what you are dealt in life or the timing of it, everyone experiences issues and bumps in the road like a duck- calm on the surface, but frantically kicking underwater and just trying to stay afloat. I honestly think MS is like that, too. People with MS and the ones closest to them seem calm and "normal" on the outside, but a lot of people dealing with MS are "paddling like heck" on the inside just to keep it together. I kind of feel like decision making for Josh and I will be like that, too, from now on. I think the what ifs and the unknowns will cause us to be overwhelmed when making big decisions. I think it will cause us to play the game of "Would we do this now that Josh has MS?" We are definitely trying the "Live for the Moment" approach. I am hoping we can keep it up and continue to live without MS dictating our lives. I know that others aren't so lucky, and I would be ashamed if I took for granted all that we are able to do.

I won't be blogging for a few days. We have some things coming up (non-MS related:) that will keep me pretty busy. Thanks for reading and keep "paddling like heck", even if it is only to make it to the weekend:)


Monday, May 5, 2014

Your Cavities Cost More than My MS

Chickens, rabbits, and hamsters are just a few examples of the "bribe presents" I received from my parents in exchange for sitting in a dental chair. Guess what? We didn't live in the country; we lived in town and had all of these animals! I have always had dental issues. My brother, who is 5 years older, has had one cavity in  his life. (He might dispute this, but I am pretty sure it occurred during college.)

I was born with a calcium deficiency that has essentially weakened my teeth. Three of my top front baby teeth came in "rotten" (Man, I am really spilling my guts on this Monday morning!) resulting in my need of silver caps. I always asked my mom why she didn't get me white teeth instead of the silver. Now that I am a mom with expenses and a budget, I understand that spending several thousand on white teeth that were going to be replaced by permanent teeth would have just been silly. So, at the age of 3, I essentially had a "grill." Who knew it would later become a trend?

I can remember jumping out of our tree house and losing the caps. My parents would haul me to the dentist to have them re-glued on. In exchange for my patience, I was allowed to pick out anything I wanted. We would go to the feed store to get the chickens and rabbits. We actually taught the chickens to slide down a sliding board in our backyard. They eventually turned out to be roosters that crowed. My daddy sent them to a "farm to live. (I really think the people came to get them and ate them. He would never confess to letting this happen, but I still to this day think it is true.) One time, when the rabbits got out of their cage, my brother convinced me to chase them around the backyard to try to catch them. During my failed attempts to catch them, my brother and a neighborhood friend posted up in the tree house with BB guns and tried to hit the rabbit. It is a wonder I survived my childhood... (At this point of reading this post, Josh is probably referring to me (as a joke) as a Mississippi hillbilly. I always point out that he did live in the country, basically on a farm, in TN. Who is the hillbilly? Really, now... I am joking, of course:)

Well, I have to have dental work done. (Really not a surprise. I just never know what they will find and the extent of the issue. One time I went and the issues they found could only be seen on x-ray. Geez...) Josh knew of my "dental" issues when he married me, so he can't say this is a surprise to him or his wallet. I called him after my appointment and gave him the news and the estimate of the cost. His response to me, without missing a beat, was, "Your cavities cost more than my MS." We both cracked up. In a way, this is true! It made me laugh, because I have told him since his diagnosis that he is high maintenance. It was his turn to let me know that for the time being, I was having a high maintenance moment.

When the weather is pretty, we usually sit on the front porch after the kids go to bed, watch the sprinklers (yes, we are old), and talk. I really look forward to this time, because it is just he and I having a conversation without someone else demanding our time. As with anyone who has bills and responsibilities, we often talk about our budget and what the upcoming/current month looks like. Even though our Tecfidera is covered now through MS Active Source, the cost of the medicine is still on our minds. We are still appealing the insurance company's denials in hopes that they will cover it. I have faith that it will work out. I really do believe the Tecfidera will be covered, and we will be relieved of that stress. As I have stated before, the out of pocket cost for a year of the medicine is roughly $55,000. I say roughly... give or take a couple of hundred dollars. In our conversation, we laughed again about the cavity comment and the cost comparison to MS. We also started talking about what it would take for us to be able to afford the medicine. Remember the minivan? I said, "We could sell the minivan." We just died out laughing. The minivan would only cover about a third of what the medicine cost. Bless the minivan's heart, she is just a used carpool taxi who has seen better days.:) It hit me on the front porch, at that moment,  for the first time in my life (our life), we really can't afford something that we essentially need for survival/quality of life. (Not many people in their early 30's with 3 kids could afford a yearly prescription of 55k.)

 I have always felt sorry for people who are in situations like this. I am truly thankful for organizations like MS Active Source and for pharmaceutical companys' patient programs. I have done pharmaceuticals before. I know there is a ton of cost that goes into testing and getting a drug through the pipeline. I have also received awards for helping a company reach a "million dollar" month, and like any business, profits will be made.

 I also know that there is no shame in needing help to get something you truly need and can't afford. I think about the move John Q when it comes to stuff like this. (I also love Denzel Washington!) I can't imagine being in a position where there is no help or assistance available. We are fortunate and blessed with an amazing life. We have great insurance and great jobs. Both of us love what we do and the people we are in our careers. We have an awesome family and support system. Through our insurance, we are able to go to amazing doctors who have helped get us set up with the right programs. They have also made us aware of everything that is available to us. What if we didn't have that? What if we didn't know or couldn't afford to know? I just can't imagine. I am hoping to get involved in some of these programs to reach out to others to help them become educated on MS, as well as the resources that are available to them. Sometimes, it just takes a little help and direction from someone to change a life for the better.

So, for the record, my cavities DO NOT cost more than Josh's MS. His tab is way higher than my tab is :)

As for the weekend, I can't tell you enough how much I love the weather in Alabama. I know, the temperature will eventually be 100 and the humidity will suck the breath out of you and give you a case of frizzy, Alabama big hair, but right now the weather is perfect. We went to the pool (a perk to living in a subdivision!), played outside, and just enjoyed the not-rushed hours we were able to spend together. We had a trampoline casualty yesterday. Josh, Jack, and Anabelle were playing on the trampoline. Jack was running around and fell through the net opening. He hit his head on a concrete block and took about 10 years off of our life. He was fine and just has a round goose egg that we are now referring to his "minion one eye." My parents hated trampolines, so I am pretty sure they are both telling me "I told you so" from heaven. My students are counting down the days until graduation and summer. I always can't believe when a school year is coming to a close.  I received a sweet comment on the blog from someone. She had great words of encouragement. Sometimes simple words can mean the world.

Oh! Speaking of simple words, the best words I heard all weekend were said to me by Josh as he was squinting one eye driving down the road. "I am pretty sure my eye is almost back to 100%." Whoo hoo!

Happy Monday! I woke up, the sun is shining, and God is good all of the time!


A "selfie" from the weekend

Friday, May 2, 2014

It Could be Worse...

When we had severe weather in Central Alabama this week, many people asked our local weatherman, "Will it be as bad as April 27th?" (April 27, 2011 was a horrible day for Alabama. Tornado outbreaks took so many lives and wreaked havoc on the state.) His response back was, "I don't think we will see such a severe outbreak as April 27th, but if you are in the path and under the gun of a tornado, it will be your April 27th."

Think about that for a second. When trying to compare two weather events, whether they compare in severity or outlook, the impact they have on those directly impacted is the same. Usually, the result is devastation and disarray.

We are moving into our 5th month since our official diagnosis. I know... 5 months into a life long journey makes it seem as if we haven't taken our feet off of the starting line.

In the past 4 months, there have often been times when people have said the following:

"It could be worse, you could have _______________." (Insert another condition/inconvenience here.)

 I know people mean well and are trying to "lift us up by looking on the bright side," but having MS is our April 27th. Saying that having another condition could be worse is really the same as down playing having Multiple Sclerosis or saying that Multiple Sclerosis is not as "legit" as other diseases/conditions.

Perspective: Josh's immune system is attacking his nervous system. Basically, his immune system is in a fight with his brain and spine. There is no cure to stop this. We can only send in weapons (Tecfidera, Vitamin D, Prayer) and hope that it slows down the progression and helps to prevent the relapses. There is no repairing the damage, there is no stopping the attacking. At this point, what is done is done. Seems like a legit "April 27th", right?

One of the hardest things for people to comprehend about MS is that is usually looks "normal" and a lot of the symptoms are more internal vs. being seen from the outside. I even forget this. When Josh has to tie a tie, I  handle buttoning the little buttons. I forget that he still has slight tingling in his fingertips on one of his hands. It doesn't impact everyday life, but it is there.

I think it is important for people to try to remember that just because MS may not "look" as severe as other conditions/diseases, it is some one's April 27th. They are in the path of it's destruction, and are fighting like heck to try to control it.

Anabelle's parent conference went great. There are several areas in which she needs to improve. The areas are more in the self-control categories. Josh and I could not agree more with the report. She is 5 and is learning to control her emotions and reactions. We are working on this at home. Hopefully, she will continue to improve in this area. The one that made me giggle was the- Needs Improvement: Table Manners. Kids are gross, and kids eat really gross. There have been times when I have caught Anabelle eating ice cream with a spoon in her right hand but using her left hand to scoop the ice cream out of the bowl. Again, couldn't agree more with the needs improvement in table manners. Her preschool graduation is coming up on the 15th. She is pumped about her part. (She is Rapunzel.) Her teacher hinted that she has no problem prancing around the stage.

The MS Leadership Class of Birmingham reception/dinner is coming up, too. I have actually secured our babysitter for that night. I can't believe I remembered to do this 2 weeks in advance! Go Mama!

I am still working on Josh for his story. In a previous life (7 years ago), he wrote for the newspaper. He is a fabulous writer, and I know he cringes when he reads errors in my blog. I admit that I write too fast and often don't proofread enough. Point is, whatever he writes will be fabulous. He will basically take a depressing story about being diagnosed with MS and make it intriguing. Just wait-

Happy Friday!


Thursday, May 1, 2014

Saturday Fun Day

Well, I am doing it again. I am making plans. This time, I am still considering them in the "planning stages", though, because more than likely something will change.

We have a FREE Saturday. Yes, it is a miracle. My goal is to not clean or do laundry. If nothing changes, we will go to the pool all day. The kids are happy, I am happy, and Josh is happy. I am hoping nothing changes.

We have a parent-teacher conference today for Anabelle. This is a meeting to tell us what to work on and what she has mastered. We are gearing up for kindergarten, so I guess we should be ready for more of these in the future. We laughed the other night when we talked about it. Josh and I both said we know what is coming.... "Anabelle is so smart, but she really needs to work on listening, following directions, not talking when the teacher is talking, yada yada." These are things we know she needs to work on. We have convinced her to not rush through her work. She has realized that if she rushes, her work looks sloppy. Sloppy work really gets on her nerves, so the rushing through work has essentially stopped.

As far as Josh and his MS, he feels great. He came in the living room the other night to let me know he was "pink." He still experiences flushing and some stomach pain with the Tecfidera. The pain is not as intense and really doesn't bother him. The flushing just turns his skin really pink. I see it more in his ears. So far, he can always tell when the flushing is coming. We have always said that when I hit menopause he will have sympathy for me and understand what I am going through.

I follow several MS blogs. Most of them have a page for "their story." I have asked Josh to write his story so I can add it to the blog. I asked him last night, and he agreed. I just want to make this known so he can't back out on me:) I suggested he do this while I am in surgery and recovery, but he will complete it on his time, not mine. I think his story is so important. It shows that things like MS can impact anyone, no matter the age or physical health. It can hit a person at anytime, and often, it is somewhat "dormant" without showing any signs of taking up residency.

Josh had a meeting/show yesterday. When he came home, we relaxed on the sun room. We were talking about writing his story and him taking part in the blog. He said that when he was at the show, he had moments of wondering if people would be shocked if he told them he has MS. I mean, how often do we look at each other and the people around us and assume they are healthy? It really makes me wonder how many people I have encountered that might be "sick" or have something, and I really had no clue.

So, I am signing off to conquer the rest of the day. Three more classes, parent-teacher conference, dentist, gymnastics, baths, dinner, packing lunches and bottles, and finally sleep. Somewhere in there, I will put my hair back, hop into some pj's, and hopefully pee in peace. :) Friday will be great, Saturday will be great, and all of the days that follow will be great. I have decided, so that makes it true.:)