Tuesday, April 22, 2014

Normal? What is Normal?

MS has changed "normal" for us. We now deal with an autoimmune disease every day of our life. It could be worse, it could be better, but either way, we have accepted it, and we are trying to be "normal."

After the diagnosis, the first few weeks were pretty bleak for me. I would catch myself watching Josh and thinking about the worst scenarios. How long will he be able to run? Do flips on the trampoline? Will he "walk" Anabelle down the aisle? Will he have a cane? Looking back to those weeks, it was tough, dark, depressing, and I really felt alone. I really missed my mom, too. She would know the right things to say, but unfortunately that phone-a-mom option wasn't available. Taking on MS and looking to the journey ahead was really one of the first major adult things I have had to do. I really wished at the time I could call my parents, they could be the adults and handle it, and I could just be a child again. Those were the days... Making adult decisions are hard and not fun. Dealing with adult things are hard and not fun. MS can be hard and not fun. The psychological aspect of MS has changed our normal. It makes me made as heck, but I have dealt with it, I am still dealing with it, and so far I we have survived.

Josh had an appointment this morning with Dr. Riser. We were told he would get a scan at this appointment to check for any new activity and to see how the medicine is working. After the first few weeks of the diagnosis, I sucked it up, and I began to not think about MS 24-7. We began to fall back into a  routine and our conversation were not centered around treatment and outcomes and what ifs and how's and whys. When Josh reminded me last week of his appointment, I had a wave of panic. I basically became obsessed with the appointment. I started to question the meds, the eye issues, the medicine denials, symptoms, daily observations of Josh... really I became in a sense "paralyzed" by the unknown of the appointment. Josh kept asking me what I thought about the appointment, what might happen, etc. I assured him not to be nervous and that everything would be fine. Who am I kidding? Before I have tests done, I have all but called the funeral home to set up arrangements, because I am convinced they are going to tell me I am dying soon. Finally, last night, when he asked me again about the appointment, I flat out said, "You should be nervous." I am not sure if he wanted to punch me or hug me. (Just a side note- he would never punch me- I have him wrapped around my pinky:) I mean, who wouldn't be nervous? We are dealing with a disease that 99% of the time you can't see or feel!!! Most of the time, MS in our case has been a silent attacker. Maybe saying what I really feel is truly what he wants and needs to hear. It is okay to be nervous about the unknown. In fact, I think it is totally normal to be nervous about scans and appointments.

Overall, the appointment went well. Josh was referred to a neuro ophthalmologist to get some baselines and evaluate his eyes. The insurance has flat out denied the gel infusions, so this will be a great way to keep an "eye" on things. (Geez, that was cheesy.) He didn't have a scan; the scan will be done on August 26th. Dr. Riser assured him he would not go without the Tecfidera. We received a letter in the mail yesterday denying the prior authorization for the Tecfidera. I am pretty sure she and her legal team will make sure the medicine is approved. Seriously, if I have to get a 2nd and 3rd job, he will get his medicine. But, all in all, the appointment went great.

I have decided today that my new normal will not be to expect the worst, but predict the best. I spent so much time worrying about the worst possible outcomes, that I didn't even give good news a fighting chance. I am too busy being relieved by no bad news, that I can't celebrate the good news.

As I have mentioned before, a teacher friend of mine is running the Chicago marathon and chose MS as his charity to raise money for. He specifically chose MS because of Josh and our "new normal." Here is a link to his page. If you feel like donating, that is great. If not, just say a prayer for the runners' safety and that a cure is found soon- specifically for the love of my life and the father to 3 amazing kiddos who think their Daddy hung the moon.


In closing this post, guess what? Something totally normal happened to us today. Our clothes dryer quit. I guess this is just part of being normal:)

Happy Tuesday!

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