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.
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...