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

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

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

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