Monday, March 24, 2014

Fun Weekend

We went to a teacher's wedding this weekend. It was so much fun. The wedding was in Liberty Park with the reception at Region's Park. The venue for the reception overlooked the baseball field. Their pictures were on the jumbo tron. Josh and I enjoyed ourselves. At one point, he and my friend Christie's husband had their phones propped up on the center pieces of our table watching the basketball games.

Josh finished IV infusions Saturday. Our Saturday nurse was a huge Tennessee fan. Small world! Really rare to find a person born and raised in Alabama pull for TN. His eye is much better. We are hoping it will go back to 100%, but with MS, you never know. I think the unknown of it all is the scariest part.

Today is beautiful outside. I am up with the little boys while Anabelle is still snoozing. I am hoping to spend some time outside before it turns colder. The kids have been watching the movie Frozen nonstop. I am not sure how much more of Frozen I can take:) Russell is scooting more...really he is spinning in circles on his belly. I am totally fine with this! I am not ready to baby proof again!

Happy Monday!


Friday, March 21, 2014

Your Mother

Josh started the IV infusion yesterday. He will do another one today and finish up with one on Saturday. He is getting an extremely high amount of steroids. This will help knock out the inflammation and release pressure on the nerve that is impacting his eye. This will not prevent the washout from happening again, but it will help nip' it in the bud for now.

I asked Josh if a cute little nurse came out to the house to give him his medicine. His response was, "Your mother was here." This stopped me in my tracks. My mom passed away (June of 2012), so I was definitely confused.  He went on to tell me that the nurse was so much like my mom that it was scary. She is short with short hair. She wears lots of perfume like my mom, and she has an infectious personality. They sat at the kitchen table and talked the entire hour she was at the house. She is from MS and has family there. He said what sealed the deal was her talking about buying stuff late at night on the Home Shopping Network. If you knew my mom, this was one of her weaknesses after my dad passed away. (July of 2008) After Josh made the comparison during their time together at the house, he said all he could do was smile and think about what a coincidence it was to have a nurse like "Trish."

On the family front...
Anabelle had gymnastics last night. Josh takes her, which gives me about an hour and a half to get organized and cook dinner. I enjoy this time... I usually have both boys. They entertain each other which is nice. Jack ended up going with Josh and AGB last night. He has a friend there who comes with his dad, and they play the Despicable Me Minion Run game on the iPad together. I was able to get a ton of stuff done! I noticed Josh stopped at Tom and Stephanie's house down the street on the way home. (These are our friends who live 3 houses down... Tom and Josh work together, their daughter Grace babysits for us, and well, we just adore them!) Steph was out to dinner with a friend, and Tom volunteered for the kids to hang out a while. Josh received a picture message of them at his house... Jack had stripped his shirt off and was wearing a graduation cap. In the background, Anabelle was a blur. (She was doing handstands in their living room:) I am so happy they love our kids and enjoy their company. I am pretty sure Jack and Anabelle would choose to live there over our house any day!

I should save this for his Senior slideshow


Russell is really enjoying sitting up and playing with toys. He is still frustrated due to the fact that he wants to follow the big kids, but he just can't figure out how to get moving. It is going to happen SOON. I am not ready for this... They say with the first child you are sooo excited to see them walk. With the the children after that, you want to push them down, because when they start walking, they become human wrecking balls! (Cue Miley Cyrus wrecking ball... sorry I just put that song in your head:)

It is Friday. At 3:00 today, spring break starts. I am super pumped about this. We have a busy weekend and week ahead. I am hoping our plans come through for some relaxing time together. I was scared when Josh was diagnosed that things would become drastically different. Yes, some things have changed. I have learned, though, that it is up to us to continue to live each day and take control of the things that we can. No, we can't control MS, but we can keep MS from controlling us.

MS Fact: The course of the disease is unpredictable and no two people will experience the same set of symptoms.
Everyone experiences MS in their own unique way, but they share a common goal... for someone, anyone, to FIND A FREAKING CURE:)

Happy Friday! (Doing my weekend/Spring Break dance now!)


Thursday, March 20, 2014

I'm Sorry...

I'm sorry is a phrase that is either really easy to say or really hard to say.  Sometimes it is used lightly, and sometimes it is used in some pretty intense situations. In marriage and really in life in general, the art of saying I'm sorry and what it means is actually really complex.

The first words Josh said to me after his diagnosis were "I'm Sorry." I am pretty sure I looked at Josh like he was an idiot. Why was he apologizing? Who says they are sorry for being sick? Are you kidding me?  Being diagnosed with MS is something that is totally out of a person's control. Thinking about it now, I'm sorry is a little bit ironic. The things I really need Josh to say I'm sorry for are things like...
  • Sorry for leaving the toilet seat up, and the fact that you fall in the toilet at least once a week as a result of this.
  • Sorry for never unpacking my bags after business trips.
  • Sorry for falling asleep with a glass of red wine in my hand and waking up startled resulting in me drenching you with red wine at 3 in the morning. (True Story... Don't you feel sorry for me?)
  • Sorry for being grouchy when I wake up.
  • Sorry for leaving my work stuff scattered on the table.
  • Sorry for leaving empty glasses on the nightstand.
Even after reading this list, the things I want him to say he is sorry for are pretty pathetic. They are such minor things in life. AND truthfully, I might miss some of these things if he ever quit doing them. Although, he is free to stop doing these things just so I can test out what it is like. :)

On the MS front...
The eye washout has not completely gone away. Josh needs a steroid for his eyes to knock out the inflammation. Dr. Emily called in IV Infusion that can be done at home. Sounds dramatic, but it really isn't-just more of an inconvenience. Josh does an incredible amount of paperwork for his job. Really, I may never understand the amount of paperwork that he does. The IV is being done at home  which works out really well for him so he doesn't have to stop work. Just another perk of having a home office. He has to do 3 consecutive days of the steroid. We are hoping to get them started today and finish on Saturday. I laughed and told him maybe he will have a cute little nurse come out to set it up:). It amazes me how far technology and medicine has come. The fact that he can do this from home and it not have an impact on his work is truly amazing.

Back to the "I'm Sorry's"...

Our wedding was FUN. Like, so fun I didn't want to leave. In fact, when we left the reception the first time, no one was outside to see us leave. We had to do a redo and tell the band to stop playing music so everyone would come outside to see us hop in the limo to start our happily ever after. Our friends and family celebrated (maybe celebrated a little too much:), but the main part of our wedding was our vows. When I took those vows, I signed up for MS. I signed on the dotted line when I signed our marriage certificate. Did I know it at the time? No. When you are young and in love, you feel invincible. All you can imagine are picket fences, babies, puppies, and rainbows. (At least as a girl I imagined this. I would be interested to see what Josh imagined:) Would I do it all again and sign up for MS? Yep. And guess what? I. AM. NOT. SORRY. And guess what else? I will NEVER be sorry.

Happy Thursday! Only one more day until spring break...


Wednesday, March 19, 2014

MS Walk 2014

For anyone interested in joining our team for the MS Walk 2014, I am posting a direct link to our team page. We are at 30 walkers!! Whoo Hoo!! AND since the last time I checked the website, we have exceeded our goal of $500.00!!

Our team is Beasley...AKA Team Jack Attack.

Happy Hump Day!

It's Hump Day!! Today is the day that Anabelle starts to countdown the days until the weekend. A five year old lacks a sense of time, so we have to constantly count fingers to figure out how many days until the weekend.

The kiddos are starting to get involved with many activities. Anabelle has gymnastics and soccer during the week so sometimes she can base her days of the week off of that. She has spent the past 4 days at her grandparent's house. (She refers to it as Bea's house which totally cracks us up. She acts as if Bea totally runs it and just lets John John visit:) She came home yesterday so she could go to her first soccer practice. It ended up being canceled, but she and Josh put on all of her gear and had their own practice in the front yard. When the boys and I pulled up from school, she was one happy little girl. She practically tackled Jack in his car seat and started kissing him. The look on his face was priceless. He was really confused, but you could tell he loved the attention. On the way home from Bea's house, all she could talk about was how much she missed Jack. Seeing your children be nice to each other and really miss each other is a great thing. I am not going to lie... they will be wrestling and "fighting" tonight, so Josh and I totally soaked in the brother/sister love.

Russell is scooting around. Poor guy can only figure out how to scoot backward. Yesterday he showed some improvement and went sideways so hope is on the horizon for him:) Our friend Tom was over at our home yesterday and made the comment that for a boy with a shaky start, he sure is solid. What a great way to describe Russell!

I am gearing up for the MS walk on April 5th. We have raised $500.00 so far! So humbled and excited. I ordered shirts today, and some items I ordered for our tent came in the mail. We have several of our close friends coming, several of our new friends joining us, and of course our family.

I don't have much more to say about MS today... but I am going to start posting some facts/myths about MS. People's reaction to the diagnosis of MS is often devastation, and what I have experienced is the immediate reference to someone they know who is disabled or has passed away from MS. Unfortunately, many people aren't up-to-date on MS research and advancements. I have learned to smile and listen to their stories. (I am not going to lie... I often times store that information in the "useless information" section of my brain. I think doing this is a polite southern thing women from the South do:)
Here are two facts about MS...

1. The facts: MS is not a death sentence. Life expectancy is normal for most people with MS.
2. The facts: Most people with MS will never need a wheelchair or other assistive devices to get around.

BOOM! There you have it! Happy Hump Day!


Tuesday, March 18, 2014

Red Ears, Procedures, Empty Pockets, and The Look

We are in our 2nd month of living with Multiple Sclerosis. I say we, because when someone in your family is diagnosed with MS, everyone takes on the the diagnosis as well. I am totally not referring to this in necessarily a bad way, but it is true. We are a close family so when something happens to one of us, it essentially happens to all of us.

We were sitting on the deck this past weekend when Josh asked me if his ears were red. Red? They were magenta! He was having a hot flash from the Tecfidera which, poor thing, happens to show up mainly in his ears. This made me laugh until I almost cried. (Not the fact that he was having a hot flash but the fact that his ears were magenta pink.) They looked so funny! Josh laughed with me so I guess that made the poking fun at his ears okay. The stomach cramps have essentially stopped. (Thank goodness!!) The washout in his eye is going away. After attending boot camp, we now know to call and get a steroid to help with inflammation.

One thing that Josh said that has really stuck with me is, "Being sick is really expensive." Wowzers! It sure is. I think we have spent at least over a thousand dollars on co-pays, tests, and lab visits. It may not sound like much, but over the course of a few months, it is! I am thankful we have been able to afford it, but I can't image not being able to pay for the tests. I can see where people could get behind super quick. I definitely have more compassion for people who are dealing with disease and sickness.

The main reason for my post is "The Look." Every couple has a look or a set of looks that they use to communicate. We first discovered our "look" when we had our first born, Anabelle. We didn't know what to expect, but we knew that there would be a time when Josh and I were the only ones who needed to be in the delivery room. I can say that my mom and his parents are totally not the type to bombard our space, but Josh and I decided that if I gave him the look or if he gave me the look, it was time to clear the room.

We have used the look throughout our marriage. Sometimes we have used the look during really hard times and other times it has been used casually. I had to have a colonoscopy done yesterday due to some issues I have been having. As I sat in the waiting room, I ran through a ton of scenarios in my head. I think my biggest fear yesterday was for the doctor to find something and for Josh to be alone when he told him. Now, let me just say, after my parents passed away from cancer, I have become a hypochondriac. Josh has been very patient with me. Most of my points are valid, but there are times when I freak out. I am getting to my point... When Josh and I went to the neurologist together for the diagnosis (after the MRI), it was painful. For the week leading up to the appointment, we had been through every scenario and the what ifs. Josh was still very hopeful that his MRI would be clean and that MS would not be the diagnosis. Me? I can say that I was a little hopeful, but the realist in me (and the hypochondriac) really thought he had MS. I will never forget when the doctor told Josh that the MRI findings were consistent with MS. Josh responded with- "Excuse Me?", and the doctor repeated himself. The "Look" I received from Josh after the confirmation of MS was one of the most painful, gut-wrenching looks I have ever been given.

What do you say? How do you remain calm and strong in an 8x8 room? I had been in this situation before... where the doctors tell you something that changes your life. They take out a sheet of copy paper and try to "draw" the problem so you can better understand. The try to give you scenarios and comparisons. But, really, those things don't mean anything. In our minds, it was Jack starting t-ball, Anabelle going to her first daddy-daughter dance, and Russ throwing a football. And in the middle of all of these thoughts, there is Josh. Strong, athletic, Josh. The person who is supposed to teach Jack baseball. The Daddy who is supposed to be the first boy who dances with Anabelle. The guy who teaches Russ how to tackle and yell "Peter! Peter!" on the football field. When you are diagnosed with Multiple Sclerosis, there is a big question mark when you are looking to the future and making plans. These two passages really help me to put plans and the future in perspective...

Proverbs 16:3 Commit to the LORD whatever you do, and your plans will succeed.

Matthew 6:33-34
33 Seek the Kingdom of God above all else, and live righteously, and he will give you everything you need.

34 “So don’t worry about tomorrow, for tomorrow will bring its own worries. Today’s trouble is enough for today.

Someone described having MS as the game show- "Let's Make a Deal." When you wake up in the morning, you never know which curtain your body will choose and what is behind that curtain. Can Josh and I control this? HECK NO. Does it do us any good to worry about it? HECK NO.

Josh was talking to Jack yesterday about going fishing. We have trails and a creek that runs behind our house. Jack was so excited. He proceeded to tell Josh and I that he and his Daddy were going to catch a shark. "A SHARK!??" I asked him. He then looked to Josh, with those big brown eyes, for reassurance. Without missing a beat, Josh told him that they would catch a shark. All it took was a "look" and those two boys were on the same page...


Friday, March 14, 2014

Boot Camp and The Burning Bush

Today is Multiple Sclerosis boot camp day! Unlike most boot camps, this one included an occupational therapist, physical therapist, and a drug specialist. While it was not physically exhausting, it was definitely mentally exhausting! I had to leave before we went to the last station, so I am interested in finding out what the drug specialist had to offer. It costs us a total of $148.00 and was worth every penny!

When Josh was diagnosed with MS, I began researching doctors and MS specialists in the state of Alabama. We found the Tanner Center for MS and Josh became a patient of Dr. Emily Riser. She has pretty much devoted her practice, research, and passion to Multiple Sclerosis. I felt more comfortable (and Josh does, too!) using a specialist who is up to date on medicine and research, as well as has a positive outlook on the advances in Multiple Sclerosis. It truly is amazing the advances that have been made with medicine and research in the past 5 years!

The occupational therapist checked Josh for many things, including his balance and muscle performance/weakness. Overall, he did great. She gave him exercises to help increase his eye muscles which in turn will strengthen his coordination. Within a few weeks, the exercises will help his body acclimate to the changes from MS. (The changes have been minor, thank goodness!) He also tried out a stimulating glove that might help with the small amount of numbness and tingling. in his left hand. It did not do much for him, and insurance does not cover the glove SO no need for him to use it.

The physical therapist was great. She talked with us about heat tolerance, fatigues, and the importance of recognizing when something is a true flare-up vs. a heat intolerance. A few side notes... Josh has always been able to walk out of the door and run a couple of miles. Me? I run about a block, almost pass out, and remember why I have always hated running. :) So far, this has not changed since the MS diagnosis. Josh also bikes, so the therapist recommended a cooling vest that he might want to wear in the summer. We live in Alabama so the heat in the summer is pretty brutal.
Another side note... the therapist is from Greenville, MS and has family in Rolling Fork. She went to Washington Academy. I am from Clarksdale and went to Lee Academy. We play each other in sporting events. Small world! It is always exciting to meet someone who is from a Delta town and knows where your Delta town is.

Back track to our time with the occupational therapist. After talking about the insurance not covering the cost of the glove, she added that our insurance wasn't covering her time with us or the physical therapist, but that a grant was paying for our visit. Our doctor actually has a non-profit and writes grants to cover the costs of her patients seeing occupational and physical therapists to determine baselines and exercises to improve their quality of life. (Not really sure of requirements/guidelines, though)
1. I was floored that insurance doesn't cover this. I mean, these exercises help improve muscle conditions, thus limiting the chance of being debilitated. These conditions are a direct result of an auto-immune disease.
2. I was humbled that the costs were being covered, and that it was one less expense we had to worry about on this journey. It was also really cool that I didn't have to set this up, they took care of that for us. We have full time jobs and 3 kids. Believe me, I really appreciated that.
3. I was overwhelmed with sadness that so many people could benefit from these fairly simple services, but without the resources, they are not getting these services. In a country like the United States, it blows me away that so many people go without something they need OR they are not helped to find the resources that can help them get access and afford these things.

We recently did a book study in our Sunday School class about finding your God purpose. This purpose/dream is more than often different than your day job. They call it your burning bush. (A reference to Moses in the Bible.)
As I was writing things down from the boot camp, it hit me. This was going to be my "Burning Bush." I am so interested and really feel compelled to help others with MS who need the help. So far, people/organizations have stepped up to help us. When Josh was prescribed Tecfidera, our insurance denied the medicine. Even though it is covered and listed on our plan. DENIED. After talking to the insurance person, it was clear to me this is protocol. Basically deny the really expensive drugs in hopes that the paperwork and appeal process will be overwhelming and the patient will move to a less expensive drug. I have done pharmaceutical sales. I know how this works... We are in the appeals process, but in the meantime, Josh needs his medicine. Upon being denied, we received a call from MS Active Source. We were approved for patient assistance and now receive the drug free for a year. Free!! A Year!!! This medicine is $54,000.00 a year out of pocket. So yep. Free!! For a YEAR!!!
So... I am really hoping to find someways to get involved in writing grants and educating patients on ways to find resources to help them live the best life possible. There- I wrote it so it makes it official.:)

Happy Friday!

Wednesday, March 12, 2014

Tiny Suitcases

We are participating in the MS walk on April 5th in Homewood, AL. I guess I have always somewhat supported people who take on these walks. For the most part, they are fun. You get to be around great friends, and you get to support a cause.

For me, this walk will be the starting point for my never-ending support and push to find a cure for Multiple Sclerosis.

Josh and I starting dating April 20, 2004. We knew each other before that date, but that is the official date we went off the market. We have been through a ton of events together...Weddings, Births, Buying/Selling houses, New jobs, the loss of loved ones... the list could go on and on. I like to think of these things as tiny suitcases that go along with us. Some events might even be considered "baggage," while others are just experiences we collect along this journey with each other.

When I lost my parents to cancer, I always looked to Josh for support. He is the one who is always there, strong and willing to take on anything with me. I think when he was diagnosed, the fact that he is the one that is "sick" has really shaken me.

In conversations, I have often said to him in responses... "because you are sick." His response is always- "Lori, I am not sick. I just have MS." This my friends is a great way to look at having something like Multiple Sclerosis. If you let things like MS and other illnesses/obstacles define you, then you will become a victim to the diagnosis. BUT I like to look at it as one more suitcase to carry with us on our journey. The less time we focus on being restrained by MS, the less the baggage weighs. I refuse to load my MS suitcase with worry, statistics, and what ifs. Instead, I am choosing to pack hope, courage, prayers, and all the things that I can to combat MS. One day, hopefully, I will pack a cure in that suitcase, and our MS suitcase will get lost in the baggage claim. :)

Happy Hump Day!

Monday, March 10, 2014

Winning the Weekend

Josh took a trip to Phoenix this past week to celebrate one of our college friends who is getting married. I will say I was a nervous wreck. NOT because it was a bachelor party, but I was a wreck because it was Josh's first "big"trip since his diagnosis. Now, he is 34 years old. He can definitely take care of himself. AND his MS is relapsing and has so far been pretty kind to him. But I think the Mama bear came out in me. I felt like I needed to be with him in case he had an attack or if the Tecfidera caused him to have any severe side effects. He did have some issues with washout in one of his eyes. I was disappointed that he had to deal with on his trip, but in the scheme of things, it was minor. Of course I asked a thousand questions, but in the end, he was fine and had a relaxing time.

I am not sure if I will ever really get over the need to be with Josh every minute to make sure he is okay. I am also not sure if the anticipation of an attack or flare up will ever go away. Is this normal? I am not sure. Is it my new normal? Maybe so. I think anytime you receive life-changing news, well, life itself changes. The way you handle things, routines, looking to the future, all of those things change.

I have been doing research, reading blogs, etc. I have found that I can focus on statistics, negative outcomes, and negative outlooks OR I can read uplifting stories, focus on positive outcomes, and live for the day. I think looking to my religion, scripture, and beliefs really helps me to do this. I tend to worry about days to come. What is the point? One- I can't really do much about it today. Two- We are not promised tomorrow- MS or no MS!! I am choosing to take this whole life thing one day at a time.

We had a fantastic day yesterday. The weather in Hoover was 70, breezy, and sunny. We spent the day outside playing, walking the trails, and watching the kids spray bubble mixture all over my van. (Poor van:)
At the end of the evening, Josh decided to do front flips and back flips on the trampoline. This made me smile and kind of snicker. MS? Not today:) Josh definitely was the winner of the weekend:)


Friday, March 7, 2014

Dear MS...

Dear MS...

Now that you are a part of our world, you will be on this journey with us. This blog is a place to talk about what is going on with our family and how we are playing the game with you each day and WINNING!