Monday, October 6, 2014

Where have I been? I have not posted in the past month. I should be ashamed. OR maybe I should be thankful that I don't have any bad news to share. I think I will go with the later.

The Beasley's have hit our stride and we are now knee deep in a new school year. The little boys are adjusted to their new preschool. I have been so pleased with the way the year has gone so far. Russell had a rough time with Hand, Foot, and Mouth Disease a few weeks ago. I accumulate 1 sick day per month, so by the end of September, I was down to 0 days. Anabelle is doing great in K5. I am amazed at how much she has grown in the past month. Jack is still Jack. Laid back, silly, and the peacemaker of the family, this little guy has a big personality.

I am afraid that Belle, our 10 year old basset hound, is nearing the end. I mean, she has pulled some stunts in the past that made us think she was dying, but poor thing is just so old now. She is almost blind, and there are times when she will head over to a neighbor's house,  we will call her home, and she trots back to our house passing us along the way without a clue that we are standing there. Josh carried her up the back steps and she slept in the kitchen. When I came down this morning for coffee, she wagged her tail like crazy but didn't get up. We are going to watch her for the next few days. Until then, I am sure she will enjoy being inside and being pampered. Josh and I started dating in April of 2004. I gave him Belle for Christmas that December. The average life expectancy for a basset hound is 12 years. I would say that Belle has done pretty well.

Yesterday, we had a "Shave Your Head" party for my friend Elizabeth. It has been a roller coaster of emotions this past month regarding her diagnosis. She has gone from stage 4, cancer in her bones, nothing they can do to now being staged between stage 2 and 3, treatment and surgery, and a favorable outcome. We have all been doing fundraising in an effort to help with co-pays and expenses. Yesterday's party raised almost $1,000 dollars for Jeff and Elizabeth. Several people shaved their heads, and many people brought scarves and hats for Elizabeth. It was hard to see her shave her head, but like I told Anabelle, losing her hair is like a sign of healing; she is getting medicine that will help her life.

Josh is doing great. He stills has days that are harder than others, but it is more of a mental thing than a physical thing. Just my opinion, but I think some people forget that technically he is still sick even if he looks and feels great physically. From what I have read, this is one of the hardest things people with MS struggle with. When things are looking great, those around a person with MS tend to forget the person has the illness. I plan on getting several books on this topic. I read that these books are great resources for caregivers and family members of people with MS.

It is homecoming week at school. Today, I am Sully from Monster's Inc. Tomorrow is holiday day, so I plan on dressing up for that. I am hoping the week goes by smoothly.
Happy fall!
Lori

Thursday, September 4, 2014

I Am Going to Live!

I have neglected the blog. I have so many things on my plate right now, and I am learning that you just have to let some things go in order to give 100% to other projects.

Josh had scans at the end of August. They looked fabulous. The Tecfidera is working, no active lesions, and basically, it was the best report we could have received from Dr. Emily. So right now, I feel like we are kicking MS down to the ground and standing on it with our feet. Will this shift and MS hold us down? Maybe. But for right now, if I am keeping score, it is Beasley's-1 and MS-0. Josh is afraid to let his guard down and I get that. BUT I feel like sometimes you have to celebrate the good and not let what ifs get in the way.

Our family is great.Our family is crazy. Every day is a rat race. I love it.

We are in the thick of raising 3 children 5 and under. It is hard, messy, and exhausting, but last night, I really thought about all of this as I was cooking and Russell was pulling on my pants screaming. This is the life! No really- this is the life. Anabelle loves k-5. She does some pretty random things and asks me pretty random things, but she is thriving everyday. While watching football, I looked over at "my baby" and was blown away- She was hanging out on the couch, munching on food, and she looked like a teenager. Jack- oh man... he has the biggest heart. He always ends up being the peacemaker in arguments. He adores Anabelle and will do whatever she tells him to do. (Like strip down naked and run through the house or down the driveway) He is doing great at his new school. He has a new friend who is now his "buddy." Jack calls him wuuke. (Luke) And Russell- this little guy is on the move. He is walking and jib jabbing about everything. Last night he ate cantaloupe, a bowl of chili, pasta, and two pieces of garlic bread. I am going to have to start tripling recipes now. I can't imagine what it will be like when he is older!!

My friend Elizabeth was given a devastating diagnosis- Stage 4 triple negative breast cancer. The scan showed that she had at least 4 hot spots on her bones indicating that the cancer had traveled to her bones. She was told there is no treatment to cure and that surgery was out. Prognosis is 3 years. She went for a bone scan yesterday, a week after her other scan, and the bone scan came back clean. CLEAN!! No bone cancer, back to stage 3, treatment and surgery available, Hallelujah! Her text to me after the results was: My bone cancer is gone! I am going to live!! Wow- best text message every!

This makes me think... am I living? Really living? Do I spend my time preparing for the future and not enjoying every little day? Are we as a family really living? Are we worried about material things vs. time together? Time we could spend traveling?

I asked Josh this the other night while we were hanging out on the deck. People tell us all of the time- don't blink, enjoy your children while they are young, soak it up. My question to him was- Are we really doing this? I try, but am I still going to look back and wish I would have "lived more?" I struggle with this and sometimes it is hard not to pray for bedtime to come sooner. I mean, when the 3 year old is running around like a crazy person, the 5 year old is spraying every inch of brick she can get to with all of our bug spray, and the 1 year old is playing in the toilet, you just can't help it. My goal is to roll with it, embrace it, suck up the craziness, and just live.

Happy Thursday! We have a busy weekend coming up with lots to do. I am thankful for that. I am going to live it up!

Lori


Friday, August 22, 2014

So, You Want Me to Ask or Not?

Hey Y'all! It's HAAAWT! (Yes, this is what I would say to you if I saw you... I am from the South, live in Alabama, and good grief, it is HOT!) We are currently in a heat wave. Add the humidity and mosquitoes, and this is the time of year that everyone sweats regardless of the measures you take to try and look put together. Josh opened the backdoor last night to take out the trash and the humidity sucked the breath right out of me. I grew up in Mississippi... I expect this, but it still gets me every time!


Our best friends from college are coming through Birmingham on their way to the beach today. They will stop and spend the night with us tonight. I can't wait!! Dustin's parents and brothers are coming over tonight, too, which makes it even better. I feel like they are my family, too. Heck, Lindsay and I have already prearranged two marriages between their daughters and our sons. I really think it will work... I cleaned the house some last night (mainly toys:) and literally spent an hour in Anabelle's room trying to make sense of the "organizing" she did in her closet. (AKA shoving everything in the right side and praying the door closes.) I laugh and tell people that I clean so no one really knows how we really live:)


My friend Elizabeth had her first oncologist appointment yesterday. I thought about her so much. Last night, I struggled with texting her or calling, because I really wanted to know how everything went. I didn't, though. I felt like it was her "call" on sharing the information she learned on her time. I can remember going to appointments with my parents and with Josh and just being exhausted- physically and mentally. The build- up for the appointments paired with all of the information you receive can just be overwhelming and sometimes the last thing you want to do is repeat it and explain it to others. I used to think that was selfish to not be more open to sharing right away, but now I totally get it. I actually started several texts to her, but I just couldn't hit send. I was teetering on the "I just want her to know that I am concerned and truly interested in what happened today" versus "I respect her space and want her to share when she feels comfortable."


When people are sick or have a disease, when should you ask them about it? Do they want you to ask them? Or do they want to avoid it and just feel normal without sickness always being the topic?
Josh and I have family members and friends that ask me about him vs. asking him about his MS. This is TOTALLY fine. But, there are times when I think Josh wonders, "Doesn't anybody care about how I am feeling? What I am going through?" I have noticed that some people have taken the- "If I don't ask, then I don't have to hear about it, and that means everything is okay." I get this. This approach helps others feel normal. But, what does it do to the person who is dealing with a sickness? With a disease? Do they feel neglected? Not very important? How would others feel if family members and friends never asked them how they feel? I think there is a fine line people walk when it comes to these questions. I struggle with it, too. Every morning I wake up and think, "I wonder how Josh feels? Does his hand have more tingling? How about his foot? Still sore?" When I get home from work, I want to ask, "How was the heat today? Still not bothering you? Did you have a good day? (MS treat you okay today?)" I don't want MS to always be the topic of our conversation, but I also want Josh to feel loved, understood, and to know that I do care, I am concerned, and I want to know. I want to share the "burden" of MS with him and not block it out.


I hope everyone has a great weekend. Again, say a prayer for my friend Elizabeth-specifically that her pet scan reveals that the cancer has not spread to other parts of her body and that she has positive receptors on the last test they are waiting on.


Lori

Tuesday, August 19, 2014

Why is MS so "Invisible"??

My friend Elizabeth is about to take on the fight of her life. Breast Cancer. She is waiting on more results that will help determine the path she and the doctors take in her treatment. Yesterday, the news was not the best. She was hoping for "positive receptors" to help customize the chemo, but 2 of the 3 tests were negative. She doesn't meet with the oncologist until Thursday, so she is basically in waiting mode. We talked this past Saturday night about what is ahead of her. We laughed, we cried, and reassured each other that this is just a big bump in the road. One of the things we discussed was losing hair from the chemo. Elizabeth has beautiful hair. Really, it is always pretty, put together, (which is difficult when you live in Alabama and deal with the insane humidity), and she mostly wears it down because her sweet little girl loves it. One of the things about her cancer is that to others, it is invisible. Unless she tells you about it, you wouldn't have a clue that she has cancer. We talked about how it is just "hair" and that it will grow back. But you know what? Yes, it is just hair, but it really is so much more. Losing your hair is a constant reminder that you have cancer. Every time you look in the mirror, it is a reminder. Elizabeth will have to face the looks of others who will notice her hair is gone, and she will be reminded of the cancer. Losing her hair makes cancer UN-invisible-- to her children, to strangers, and to herself. I am not sure if I will ever make the comment- it is just hair- again.

This brings me to Multiple Sclerosis. While crying and venting to Josh about all of this, we had a very candid conversation on the invisibility of MS and how no one, not even me, will ever truly grasp what  he is going through and faces everyday. Don't get me wrong, I have read so much about MS that I feel I could give a public service announcement on it and correct doctors when they slip up. (Of course I would never do that- I teach business courses. I do not know more than the doctors!!) For Josh, his MS is mainly invisible to others. If he didn't tell people, they wouldn't have a clue. I have witnessed the shock on people's faces when I tell them he has MS. The invisibility of MS can be a pro, but oh man can it be a con. MS is really a witch with the letter b when it comes to messing with the head mentally. It is also cruel when it attacks the body and can be only be felt on the inside and not be seen on the outside. It is overwhelming at times, it messes with cognition at times, and sometimes worst of all, others don't know this and just don't get it- me included!! I pray everyday that I can understand more about this disease and be prepared for times when Josh needs me to just "get it" and see past the invisibility of his MS. I want others to not discount his MS just because he looks and feels great. I want others to respect that inside, everyday is a fight in someway. Whether it is an arguement or a full-out knock down drag-out, MS is a fight.


I struggle with invisibility of illness and disease being a good or bad thing. I don't know... I just don't know. My response to those who ask about Josh and his MS is that so far, MS has been kind to us. Sometimes, I don't know how to respond and this has been the best that I can think of. MS is a daily struggle. Sometimes it is noticeable and sometimes it is invisible. Is that good or bad? I just don't know...

If you are a prayerful person, please keep my sweet friend in your prayers. If you believe in good vibes and positive thoughts, by all means send them her way. For Josh and I? We are great. We have an amazing life. We just need to remain focused on what we are blessed with and use it for the good.

Happy rainy Tuesday from the great state of Alabama!
Lori

Friday, August 15, 2014

Questions

I sometimes wonder how many questions I answer a day. I teach school so questions are a crucial aspect of my day. I really enjoy answering my students' questions. I also like to ask my students lots of questions. We have 3 children 5 and under. I really think that 90% of our conversations revolve around constant questioning. Why? What is that? Can I...? Will you...? Are we...? For the most part, the answers are pretty cut and dry. BUT...

Some questions aren't easily answered. "Daddy, if we do the lemonade stand for MS will we make enough money to fix you?" "Daddy, do you still have MS?" Mommy, do they have medicine for Daddy yet?" "Mommy, do I need to talk quietly so I don't hurt Daddy's MS?" These questions are the hard ones. How do you make a 5 year old understand that "fixing" something is currently not an option? I wish that MS was not a part of Anabelle, Jack, or Russell's life. Oh man, I would give anything if it wasn't in our life. MS is forcing me to answer questions that are hard. MS is causing our family to deal with things that are hard. MS has stolen some of my sweet baby girl's innocence.

I recently sent a text to one of my best friend's from church that said, "Hey! Is everything okay?" After seeing a post on her Facebook page that read along the lines of- "Hey Liz! I am praying hard for you." I began to panic a little. I thought maybe someone had passed away. It wasn't until we pulled in the driveway and I checked her Facebook that I knew something was wrong. You know, like the feeling you get in your gut-- something is wrong. My friend had posted a Caring Bridge link to her page. I began to cry which triggered a question-"Mommy, why are you crying?" I forget sometimes that little eyes are always watching. After clicking on the link, I read that my friend has breast cancer. Yes, the ugliest, most cruel word to me- cancer. It was my turn to question. Why? Why? Why! Why her? Why now? She is in the prime of her life with two little ones. She had an awesome promotion at work. She is giving and selfless of her time. WHY?
And then the questions from Anabelle. "What's wrong?" "Is Ms. Elizabeth okay?" "Are we still playing with them this weekend." Again with the hard questions! Sometimes the questions are too much. And just another testament to her amazing attitude and love for others, her first response to me was- "I am so sorry you found out this way... I know how many feelings it brings up for you." See- always thinking of others before herself.

My faith teaches me not to question, but trust. I just finished a conversation with a co-worker whose husband has progressive MS. He is scheduled for an extremely risky surgery next week. I bet I asked at least 10 questions. After returning to my classroom, I felt like a not so good friend. I bet she could have done without all of the questions from me. I feel like whether you are a caregiver  or a person with MS, you have to learn not to question sometimes. With MS, as it stands, many of the questions just don't have answers.

I can assure that 8 months from now, I will be posting that my sweet friend beat cancer. I will not question this, only trust and have faith...

Happy Friday! Don't ask questions! Just rest, relax, and enjoy yourself!
Lori

Tuesday, August 12, 2014

And We're Off... And Approved!

Today I officially started my 8th year of teaching. I am excited and can't wait for the school year.  Strange to hear a teacher say that, right? Well, I love my job and can't imagine doing anything else.
With the beginning of a school year also comes the beginning of daycare and now, kindergarten!

Last week, Anabelle started K-5. Many asked me if I was sad. I can honestly say that while a part of me was sad, I was really just so excited for Anabelle. She is spunky and has always liked school, so this was just an amazing milestone in her life that I got to celebrate with her. The first day went off with a hitch... They gathered by class in the cafeteria and were called by class to dismiss and start the day. When they called her class, she put her backpack on, turned around and said, "Bye Y'all," and she never looked back. She loves her teacher, has made friends, and we couldn't ask for a better school. I am relieved, still excited, and eager to see what the year brings. She was really concerned about learning to whistle (I assured her this was not required.) and if the cafeteria would be serving grits. (Yes, she loves grits, and Yes, you can tell we are from the South.)

Jack and Russell will start a new daycare. I love the new daycare and staff, and I feel they have so much to offer the little boys. Josh is taking them to meet the teacher today. I am hoping that they get as excited about the new arrangement as I am. Russell is now walking some. He got his first pair of shoes (extra wide) and is not a fan. He weighs 26.3 pounds. He is a solid built boy:) Jack is still obsessed with minions and I am embarrassed to admit (EEK!) I think he watched the Lego movie 3 times yesterday.

I went to parent orientation last night for the little boys. Josh stayed home to man the house. I kept feeling my phone vibrate in my bag while Jack's teacher was talking. GEEZZ!! My first thought was, "Doesn't Josh know I am in a meeting??! Then I thought, "What if something is wrong??" I very discreetly checked my phone. After reading the message I let out a gasp that caused the entire room to stare at me. I smiled, but immediately had tears streaming down my face. Josh had sent me 3 messages in a row...

TECFIDERA APPROVED
TECFIDERA APPROVED
TECFIDERA APPROVED

We have been appealing our insurance company and trying to get them to cover Josh's meds since January. I believe that we have the best doctor and the best nurses that have worked so hard to make sure the approval would happen. I have prayed about this happening, I have cried, I have cussed, and I have screamed. I have sat in silence, and I have been vocal about this. I am so grateful and thankful that the approval has happened!!

This week will fly by... By the time it is Friday, I will be exhausted. The first week back with students is very hard. I am hoping that we can all get in a routine.

I hope everyone who reads this has a great week. We will never get this time back, so we must make the most of it!

Lori

Wednesday, July 16, 2014

No More "Babies" in the House

Russell is officially a toddler today. It is his 1st birthday!! Time Flies!

When I put him to bed last night, I told Josh to give him love and that tomorrow he wouldn't be a baby anymore. Josh's response was- Wow! His birthday is such a happy and sad day. Josh was referring to Russell being sent to the NICU and our journey with pneumothorax's, breaths per minute, and d-sat's. He has come such a long way. First of all, he is huge. He eats and eats and is so active. He loves to climb, babble, and follow the big kids. He has developed a sweet personality. He has learned to shake his head back and forth to respond. So far, he only knows the direction of no. He is off of the bottle and loves a huge sippy cup of milk. He is our completer... He made us a family of 5. Complete- we are complete.

I always ask Josh how he is feeling. I also let him know that others ask me about him because they don't want to bother him. He is always so taken back by this. Why don't people just ask me? is always his response. He said something to me that really makes sense. One night while relaxing on the deck... Josh to me- You know, Lori, (He is always serious when he uses my real name and not my nickname...) just because I was given the official diagnosis doesn't mean I automatically started feeling bad and have issues everyday.
When I started this blog, I thought I would have more updates and news about Josh's MS. Turns out, I really don't. Oh, I am so thankful for this. Yes, he has his quirks and to be honest, we are not sure if some of these are from MS or just from aging. For example, his right foot bothers him a little. In the morning and night, it is crampy. Is it major? Nope. Just a quirk. Does it happen all of the time? Nope. Just occasionally. I usually  rub his foot and it helps. Is it my favorite thing to do? Nope. Men's feet are not my thing. It is just something I can do to help.
Josh also told me that for the past few weeks, he really hasn't thought about MS. For once, he said, it hasn't consumed him. Hallelujah! I think this is one of the best and biggest hurdles I think he has jumped. Sure, it is on his mind, but I think he is coming to terms and dealing with it in better ways.

I am off to shop for our family birthday party for Russell! Anabelle has decided he needs an Elmo party. Really, it is mainly for Jack and Anabelle. Russell has no clue. He is just going to get his favorite... spaghetti and a big fat cake to smash!!

Tuesday, June 24, 2014

Summer Craziness

I often get the response- "Oh, you are a teacher. Must be nice to get the summers off." Well, yes, it is. Oh, I still do work for school. I am in charge of some testing, so every Monday and Wednesday night I set up online testing. I have gone to school for a few hours at a time to test. I have 2 workshop days coming up. BUT it is nice to have the summers off. There is one thing that I never have time off from... FAMILY! We have had an extremely busy summer. Remember my last post about the swim Nazi? Well, she is a miracle worker. After two weeks, Anabelle and Jack are swimming. Not the dog paddling, struggling to stay afloat swimming. I mean legit SWIMMING! Anabelle is swimming using her arms and legs. She is even underwater swimming and diving for toys on the bottom. Jack is swimming so great, too. He is not very excited to dive and retrieve things on the bottom, but he is swimming. Both of the kids feel comfortable jumping in and swimming in the deep end. Really, the swim lessons were some of the best money we spent this summer.

Russell is rearranging our furniture one piece at a time. He is pushing and walking behind anything he can grab. Yesterday, our bar stools and our kitchen chairs were in the foyer. He gets hung up in a certain spot and just abandons his furniture and searches for more. He has 4 of his front teeth now, and blonde hair. This morning, he decided to get up at 5:45. He and I went downstairs, and by 8:00, I rocked him down and he took his first "nap" of the day. Early mornings are no fun, but the time with just him can be great. He will be 1 next month. I can't believe it, but at the same time, I can.

Josh and I went to a beach wedding in Seagrove, FL this past weekend. My mother-in-law kept the kids for us to leave on Thursday and return on Sunday. We had so much fun! About 15 couples from college were there. The wedding was beautiful, and we were able to relax. My father-in-law told us an hilarious story about Bea (mother-in-law) and the kids. She put Russell down for bed, and Anabelle asked her to cuddle with her for a minute before she went to sleep. Jack was downstairs. Bea was only in there for a minute, and when she came down, Jack was gone. She started to panic. Long story short, she found him in our bathroom using the restroom. She kept telling him how scared and worried she was. With big brown eyes, he looked up at her and said, "I really sorry Bea, but I really had to poop." He is a ninja... fast and sneaky so I totally get it. One reason he had to go upstairs is because the little stinker locked the downstairs bathroom door from the inside, and they couldn't get it open.

Josh is doing great. He has had some really good days. Yes, there are days that are better than others, but we really can't complain so far. Someone made the remark to him,  "Wow, you really have a tough life." (They were being sarcastic.) It really hit him the wrong way. I don't think people realize that sometimes, life is tough and not everyone can see it. You can really look at that statement two ways.
1. Yes, life is tough. MS diagnosis is tough. Fatigue is tough. Overwhelming feelings are tough. Tecfidera side effects are tough. Future planning is tough. Worry is tough. Mood Swings are tough. Raising a family of 3 kids is tough. Work is tough.
2. Life is great. Being alive and breathing is great. Taking a nap is great. Feelings of peacefulness are great. New and improved medicines are great. Looking forward to the future is great. Enjoying the moment is great. Good moods are great. Raising a family of 3 kids is tough great. Having a job is great.
I guess there will always be a glass half full and a glass half empty approach. It really is about perspective.

I really intended to blog more this summer, but with all of the activities and things going on, it has been harder than I thought.
I have a special post coming up that has been on my mind. Being at the beach for the wedding has really made me think about it. Josh has also given me part of his story to add to the blog. He is working through the other part, so hopefully I will post that soon.

Anabelle is with me at work right now. She and I are going to leave here and have some girl time today. Love her and her sassy self...

Happy Tuesday. Hope it is a great one-
Lori

Thursday, June 5, 2014

Swim Nazi

Before anyone gets offended by the title, our swim teacher refers to herself as the "Swim Nazi." Well, actually "Swim Nazi, Jr." Her mother is the original, and their title comes from way back when the "soup Nazi" was popular on Seinfeld.

We signed Anabelle and Jack up for two weeks of lessons with the swim Nazi. Pricey? Yes. Worth it? Oh yes. Swimming is a survival skill that I think everyone should have. I witnessed this first hand when Nashville flooded. I saw our daycare teacher being rescued on a mattress because she couldn't swim. We decided to go full force with the swim Nazi.

Today marks the 4th day since they started. Jack is jumping in, coming up for a breath, then putting his head under water and swimming to the side. Anabelle is doing the same thing; she was able to do this after day 1. They encourage moms and dads not to stay, but let them know it is okay to hide in the bushes and watch. Today, Josh decided to stay and watch. He was pretty amazed at how well our kiddos did. Jack, when he is with us, is still convinced he is going to sink and stay at the bottom. Bless his heart-

Not much is going on in our household, which is nice. No snakes or other creatures to report on. Russell has started back to MDO, so I am planning on doing some fun things with the 2 big kids.

Josh is feeling pretty good. For that I am so thankful. The heat can be kind of hard on him which causes him to be tired. However, sometimes it is hard to distinguish between MS tiredness and 3 kids tiredness. I know the MS fatigue is brutal, so I am hoping this is more from 3 kids, swim lessons, and tons of stuff for work. I do think he has had experienced some minor spasticity in his foot, but it clears up once he is up and going. If this is all he has going on right now, then Praise God! I know of so many other people who deal with much worse each day. OR, he couldjust be getting old. (HeHe)

I am looking forward to a relaxing weekend. I hope the same is in store for you-
Lori

Monday, June 2, 2014

Summer Break... And We're Off!

The last few weeks have been somewhat of a blur. I was scheduled to have surgery on the last day of school, but the Tuesday before surgery I left school with 102.5 fever and tested positive for walking pneumonia. I have had this before. After all, I work in a germ factory. I was given 2 shots and antibiotics. I felt better a few hours later, but my surgery was canceled. My brother, who was coming to keep my kiddos during the surgery, decided to come visit and brought my nephew William. We all had THE BEST TIME. The SEC Baseball Tournament is played 5 minutes from our home every year. We were able to watch some baseball and just visit. Jack is obsessed with William, and for once, Anabelle was kind of left out. It was great to see them all have so much fun.

Here is a rundown on what all I want to talk about. Since I am so scatter-brained, I need to make a list!
1. World MS Day
2. Comfort Zones
3. Making Others Understand
4. Baby Birds and Snakes (EEK!)
5. Atlanta

World MS Day
In the mail a few weeks ago, we received a postcard advertising World MS Day from the MS Society of Alabama/Mississippi. The postcard also gave us information on redeeming free tickets to the Birmingham Barons game and a free hot dog and coke. (I love hot dogs so I was hooked just by the hot dogs!) Josh put the postcard on the kitchen table. I picked it up later that night and asked him why part of the postcard was blacked out. The heading was: Celebrate World MS Day, but the Celebrate had been marked out with a sharpie. Josh informed me that he felt like the Celebrate was a little much. I couldn't agree more. Celebrate? Nope. I am not going to celebrate MS. Recognize? Yep. I will recognize it. Honor? Yep. I will honor those who are battling this disease. We both agreed that Celebrate was just an odd word to use.

We took some friends and went to the game. We stopped at Good People Brewery to hang out for a bit before going into the stadium. It was raining a little so we were glad to take cover. The weather for the game ended up being perfect. I am pretty sure we spent 30 dollars on concessions. Jack was even on the "Kiss Cam" with our friend Grace. Seriously, the kid has some moves. He was on the jumbo tron again dancing. Overall, it was a fun night, and I am glad we were invited.

Comfort Zones and Making Others Understand
Since the official diagnosis of MS, our comfort zones have changed. Josh's comfort zone more than mine, but you know the saying- Where you go, I go, so our comfort zones are pretty identical. It is hard to explain this to our friends and family. Whether we want to admit it or not, MS has changed Josh and I. I said at the beginning of this that I wouldn't let it change us or control us, but the fact is, MS has changed us.
Chaos- Josh can't do chaos anymore. Big crowds, crazy kiddos running around, unorganized things- he just can't do it. He tries, but there are times when we shoot each other the look and know that it is time to head to a calmer environment. He can't help it. The MS takes a toll on a person mentally and physically; he just can't help it. He and I recognize it, though, and try to remember it is part of having the disease and not a sign of who Josh wants to be.
Isolation- We don't want MS to isolate us, but the truth is, there is no place more comforting than your home. The place where things are normal, and "how do you feel?" and MS aren't the topics of choice. Don't get me wrong, Josh is fine with people asking him how he is, but at home, he doesn't feel like MS dominates his presence.

Baby Birds and Snakes
Well, as I type, my husband is climbing an extension ladder at our home to try and get Puddles the cat out of a tree. He said she is about 35 feet up. I will update on how that goes...

This sweet cat has now brought us a baby bird. She didn't kill it, just pretty much wounded it and played with it. We watched two huge redbirds dive bomb her under the deck to try to get her to release it. Heck, I even chased her a bit, but when I realized the bird was wounded, there wasn't much I could do.

The other day, my sweet friend Elizabeth B. posted a video on Facebook of snakes coming out of a snake hole. It was utterly disgusting. Josh is deathly afraid of snakes. To the point of dry heaving and running until he is miles away. One time, when we were dating, we decided to take an old truck out on some land near my parents' house. We walked to the truck with a gas can. My dad had informed us that the keys were in the glove box. When I opened the glove box, about a 4 foot long snake slithered from inside the glove box to behind it. I looked back, and Josh had dropped the gas can and was already back to my parents' porch. Seriously, he left me for dead. Anyways, I decided to show Josh the video, because I thought it would be funny. He actually almost lost it when the first snake came out of the hole. Looking back, it was a mean thing for me to do. A little while later, when mowing the yard, he came upon a pretty sizable snake. Kinda shook him up, but the snake was long gone with 10 seconds. So, that night, Anabelle and I were snuggling on the sun room in a chair watching TV. Josh walks in and immediately says, "What is THAT?" (There may have been a choice word in there...) I looked down and saw a skinny, about 10 inches long, snake just be-bopping along the floor next to our chair. I threw Anabelle toward the kitchen and yelled for her and Jack to run. They went to the deck and watched the chaos through the window. Here is how this went down.
Josh- " I am going to trap it with a broom."
Me- "Nope. We need a shovel so we can chop it's head off."
Josh- "Seriously, Lori?? It will mess up the hardwood floors. I am going to get the broom."
Me- "If you don't chop it's head off, it is not going to die."
Josh proceeds to slam the snake with a broom. Well now the snake is thoroughly pissed off. The front part of the snake is now going crazy. Josh is yelling at me to do something, but I can't find anything to grab.
Josh- "Get the metal spatula!"
Me- "What? Okay!"
I grab the long metal grilling spatula. The snake is still going crazy.
Josh- "Do it!"
Me-" I can't do it if he is going crazy!"
Josh then steps on the snakes head. Now is my time to ..... STAB!
Josh- "@#*^!! That is my toe!!"
Whoops! My first stab attempt hit Josh's foot. I then managed to cut the snake in half. Sounds gruesome, right?
Me- "You know the snake is still going to be moving even though it is dead, right?"
Josh- "Whatever. Just get rid of it."
Sure enough, he lifts his foot and the snake's tail is going nuts. Josh seriously ran out of the room at this point.

For the rest of the night, Jack would randomly yell snake, which sent Anabelle running for the deck and me to the spatula. We would have to do a search, then give Anabelle the all-clear to come back in. After researching the snake, it was probably full grown. It is native to Alabama and not venomous.

I called my brother and true to being Mike Simpson's son, he said, "Dang Lori. You killed a good snake." He then proceeded to freak me out by saying where there is one, there is probably another.

I have come to the conclusion that the snake came in through the pool bag. I left it outside overnight and brought it in the next day. I am not sure if the snake snuck in the bag or not, but I am telling myself this so that I don't freak out about the snake's siblings possibly being in my house:) I also told Puddles she needs to earn her keep. Quit killing cute things and take care of real business.

Atlanta
This past weekend, I went to Buckhead for a girls' trip to celebrate one of our best friends from college getting married. I had a blast, and it was worth every penny and every hour I was there. I needed it. I needed a weekend that I was only responsible for myself with no agenda. Josh was awesome with the kids and never made me feel guilty for going. He gets it. I get it. Everyone needs time to themselves. One night, we went to a place called The Establishment. I am pretty sure I did not fit it, but it was fun. The parking lot looked like an exotic car dealership, and every person looked like they were on People Magazine's Most Beautiful List. I don't think the Honda Odyssey would have fit in.

I told Anabelle before I left that Mommy's need to take trips, and lots of times, it makes them a better Mommy. When I returned yesterday, Jack asked if I was back from my field trip. :) I was so glad to see my babies and Josh, but it was back to the real world, really quick!:)

Oh my gosh!! I forgot to mention that I went to IKEA for the first time!! That place is magical. Seriously, it is awesome!! I bought Russell a new highchair and a few odds and ends for the house. I am going back soon to just shop and enjoy.

Russell's new IKEA Highchair (Notice all of the Puffs on the ground. One day he will figure out the whole picking them up and getting them to his mouth:)

My best friend Lindsay and I in Atlanta!


Puddles Update:
Josh said he climbed up the tree another 6-8 feet after climbing the 30 foot extension ladder. He grabbed her, and she held on for dear life for the climb down. In the future, we were told she will eventually come down if she's hungry.  I am just glad he got her. I am a little attached:)

Hopefully I will be blogging more. I have been a little lax the past week or so. Josh and I talked about his story to post, and he has been brainstorming all that he wants to write and let people know. I can't wait to read it!

Happy Monday-
Lori

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!
Lori

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...

ANABELLE SCORED A GOAL!
 
 
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!

Lori


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:)

Lori

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!

Lori


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!

Lori

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.:)

Lori

Tuesday, April 29, 2014

Mother Nature Calling

I grew up in a small Delta town in Mississippi. Clarksdale, in it's prime, was an awesome place to live. Everyone knew each other, and you had small-town shopping, plus farming and hunting. My parents were raised there, and I lived there until my 9th grade year of high school.

On our street, the neighbors were close. I spent most of my time outside playing and be-bopping around to everybody's homes. Our next door neighbors were hilarious. Everyone knew Hal Hubbard. He was tall, loud, funny, and would snap you in an instant if you were doing something wrong. We actually had somewhat of a domestic dispute in a rental house down the street from us. He marched down there, stood in the middle, and took control. When the woman yelled, "Call the law!", Hal yelled, "I am the law, woman!" A silence fell over the neighborhood, and we never had trouble from them again. Well, Hal was afraid of storms. He always said he could control just about everything, but he couldn't control mother nature. I can remember one time, specifically, when we had a tornado pretty much go over our house. My mom, who was not afraid of these things, went outside to watch. I can remember Hal screaming and calling out to God, because he saw a tree swirling. I'll never forget feeling so small when a man who was so "big" and called himself the law was afraid of a storm.

Yesterday, my prediction of spending much time in the basement was correct. We put Jack and Anabelle downstairs around 7:00. They watched TV on the couch until Anabelle fell asleep. We were still under a watch, so there was no need to panic. Russell was upstairs in his crib. Jack tends to wander aimlessly until someone pretty much forces him to go to bed. I managed to convince him to snuggle with me on the couch in the living room until he was out. Well, so was I. I woke up to tornado sirens and an eery atmosphere. I yelled down to Josh (who I am convinced was sleeping on the couch downstairs with Anabelle) and told him we needed to get everyone down. I woke Russell up (who at this point thought it was morning and was trying to play), gave him a bottle, and stuck him in the pack-n-play in Josh's office downstairs. Jack and Anabelle were moved to the floor in the corner of the basement. Our stinky, blind basset hound was down AND I managed to get Puddles down as well. At this point, we had about 30 minutes before it was expected to go over us. What did I forget? ...to put on my tennis shoes!! After being stranded on the interstate in the snow with nothing but flats and no socks, you would think I would have learned my lesson. In fact, my brother sent me a text to make sure I had shoes:)

Knowing you are in the path of a tornado is scary, but at the moment they say your subdivision and hang their head because it is a densely populated area, fear takes on a whole new level. I actually thought of Hal at this point standing on his back porch. Some things you can't control, and you end up being a sitting duck. We were fortunate that the 2 tornadoes went over us and just North of us. When they came to the town I teach in, they just sort of stopped. I was so concerned, because a good bit of my students live in apartments. I finally went to bed at the end of this at 1:00. My alarm went off at 5:45 to start Tuesday and guess what?? Round 2 starting at 2:00 this afternoon.

I am exhausted, but glad that I had a house to wake up in, a car to drive in, and clothes to put on. I treated myself to a drive thru breakfast, and I am powering through the day. I have been giggling a little at the things I brought down last night. The cat's carrier- like she was getting in there. Formula- in the event that everything was blown away, I was conviced I could hold on to the new tub of formula we had bought. Diapers- I mean, I should have grabbed my folder of "important papers," like our birth certifictes, social security cards, car title, deed. But no, I chose diapers and formula.

I am hoping we will let out early so I can go back to the comforts of my basement. We have always lived in a house with a basement, which makes me feel better about bad storms. I am hoping today is not a repeat, and everyone stays safe.
Sleeping in the Basement Floor (Gran's Quilt is our comfort blanket:)

Monday, April 28, 2014

Pictures and Some Lyrics

I don't have much to report about the weekend. Saturday, we had soccer. Anabelle played a little bit. They kept asking her if she wanted to go in. She was very content to guard the cooler. In fact, she told us on Friday night that she was over soccer and ready to try ballet. After soccer, I did some yard work. At some point, Josh, Russell, and I hung out on the trampoline while the big kids napped. Sunday, I drove to Nashville and back for a baby shower for my best friend from high school. She is due in June. She looked beautiful. It is always weird, though, to see your high school friends grown up and pregnant:) Before I left for Nashville, I found Jack in the bathroom surrounded by heaps of toilet paper. His excuse for taking it all off of the roll was that he needed a telescope. I understood and let it slide:)

I have some pictures from Easter and of the cat. Puddles grows on me everyday. People usually compare cats and dogs. After having Puddles, I feel like that comparison is about like comparing apples and oranges. I love dogs. I now love cats. They are very different... just depends on what you are going for. Oh! I almost forgot! We have a ton of foxes in the woods behind our house. Saturday night, 3 of them played with each other around the kids' jungle gym. One took off running up the road. It was really cool to see them. 

I am also putting some lyrics from one of my favorite songs. I listened to the song yesterday while traveling, and the words seemed to fit with my last blog post about plans.

We are supposed to get crazy weather today. I expect to be in the basement for most of the evening and tomorrow morning.

Happy Monday!
Lori
Hunting Eggs

Hunting Eggs

Jack losing it because I asked that the minion not be in the picture.

Post-Meltdown. I am losing it at this point.

I am happy, but everyone else is miserable:)

Russell has now busted out of the bottom of his outfit. John John has strategically placed his hand over the mishap for the picture.

Probably the best one they took. Russell is not looking, but we will call it a dramatic pose.


The minion has officially made his presence known.

Puddles this morning looking for action off of the deck.

Striking a pose.

She was trying to figure out the camera. I was kinda scared the flash would throw her off balance resulting in a fall off of the deck...

My morning partner

Silly face



These are the days, the time is now
There is no past, there's only future
There's only here, there's only now
These are the days by the sparkling river
His timely grace and our treasured find
This is the love of the one magician
Turned the water into wine
These are the days now that we must savour
And we must enjoy as we can
These are the days that will last forever
You've got to hold them in your heart.
--Van Morrison