Day 4 and 5

Overwhelmed!

Today Thursday, (well really yesterday, since I am writing this a day late)... was one of the most overwhelming, emotional, and long days of my entire life! Today, Friday, has been better and we are feeling much more upbeat. I guess it is good I waited a day to write this post! Anyways, here is how our past two days have gone...

Thursday (Day 4)

The morning was busy getting the girls to swimming and trying to get a few other errands done. Once we got everything done, we took the girls over to stay with Papa Hammond. He was so sweet to take them for the entire day for us!!! Poor guy, I don't know if he knew what he was getting himself into. He was so sweet about it though and we really appreciated it.

Aaron and I then headed up to SLC to do a bunch of things. We started off at the Uof U. Aaron scheduled an appointment with his committee chair. When we got there, Aaron relayed the news to her and then we discussed some options. She was so upbeat and positive. She told us some good news about taking time off, changing graduation, and what direction he can go if he needs more time. (Which I don't think he will, but we wanted to know if there were those options) Then she told us about this cool program the UofU is part of with South Korea. They are going to be part of a University that brings professors over there and here, where they teach classes here or there and pretty much put the U as part of a Korean campus. She mentioned Aaron's Korean speaking skills and how that would be very valuable in the future for the PhD program he is in. I think it was comforting for him to see that despite him just telling her he was diagnosed with MS, it didn't even make her think twice that he couldn't be part of and maybe be employed with this new program. It is one step closer for him to see that disease will not define him and his capabilities to be successful!

After the meeting we met up shortly with an old friend. Then it was off to get a quick lunch. After lunch we headed to the Thesis office. All I can say is that I never want to have to write a dissertation. I couldn't believe the silly requirements and hoops you have to jump through! Luckily Aaron is a fantastic writer and hoop jumper... j/k!

After we then headed to DMBA our insurance place to seek some advice on our health insurance plan and how to make sure everything is covered. It was a good meeting and we feel extremely blessed that we have the insurance that we do, another little tender mercy in our lives.

Then it was off to the Neurologist. As we arrived to parking lot we stopped the car and said a little pray. Our hope was that we'd get some answers and feel like we'd know what the next step was. We were anxious and anticipating a great doctor full of kind words and wisdom to help us feel at peace. Little did we know what was to come. In came the doctor. I instantly sensed something strange. He sat down, pulled his hand out with out making eye contact and shook our hands. Then he pulled out a pen and asked what was going on. He took lots of notes, asked a few questions, rolled his eyes at me (I was asking a ton of questions, I know I was probably bugging him, but hey I am the freaked out prego wife) Anyways, he then said okay, and gave Aaron of little reflex tests. He didn't say anything the whole time, except the instructions of what he wanted Aaron to do. Then he jotted a few notes. After he Left to get some things. When he came back in we discussed his symptoms some more. Then he finally looked up at us and said let me show you Aaron's brain. 

He then pulled up the CT scan. There it was the scariest and most horrific images of my life. My sweetheart, my best friend, my world and his stupid MS scars... everywhere! My heart sank. He showed us which ones were recent within the past month, which ones were active and then which ones have been there for awhile. I can't say much more, I don't know much about the disease, but it was really hard to see. We noticed there may be some on his spinal cord too. We were told they need to do more scans on his spinal cord to know for sure. The Doctor so kindly informed me that really it didn't matter whether he did or didn't because he had MS and we don't need to know every place it is. I just shut my mouth after that. 

Next he pulled out a flip chart. Then he said this tells you all about MS I can go through it, but really you look like you are done. My thought was... "Really? You think we are done? Because honestly, we had just started and have no answers!" But, he made it pretty clear he wasn't there to read through a flip chart with us. So we said he was fine. I then finally said, "Ok, he has MS, now what?" That jump started him to his opinions about medication. He then said for us to look them over and when we came back he'd prescribe something. He went over them briefly. I looked at him and was, "What one would you use?" I am sure by now he was about ready to kill me, but these were things we needed to know. We were lost, there were 5 medication listed, all with horrible symptoms and most were a daily injections! He suggested a few, but asked us to look them over some more. After I pulled out my list of questions and just started to fire. I was done with caring what he thought, I was there to get answers. Unfortunately, most weren't answers how I wanted. He then looked at us and said. Why don't you come back in two weeks. We will get some blood work, take another MRI of Aaron's neck and then you think about meds. 

That was it. He was done and it was time for us to go. He got us a pamphlet and then gave us instructions to meet his nurse up front to fill out a form and then head down to level 2 for blood work. I think Aaron was so overwhelmed he missed the comment about blood work and lever 2. So he tried to tell back our instructions to the Doctor, asking if the nurse was taking us to get the lab stuff. The doctor looked at us and said very sarcastically "You can find your own way to level 2 on your own can't you?" I just looked at him and said, "Yes, sorry he was just confused what you had said, we can find level 2 on our own." We then left the room. 

As Aaron was trying to make his next appointment, I could just tell he was about ready to explode with emotions. This had not been what we wanted. As we headed down to the lab, Aaron realized that they were going to take his blood right then. I think he was so ready to leave the building, that he just began to cry... I only tell you this, to understand the anguish, confusion and heart ache we felt at that very moment. He quickly pulled himself together as I tried to find ways to make him laugh. Then they sucked him of his blood filling 6 tubes. Poor guy really just hates needles. Thank goodness the nurses were very kind. Finally, we could leave! We got in the car and both sank into our seats. We looked at each other and said "That was not what we had hoped." It was definitely time for a second opinion, we needed to get into the Specialist as soon as possible. We knew we would have to call first thing in the morning.

We had to leave immediately though because we had 1 more appointment with Aaron's colleague who had invited us over to speak to his wife who has MS. As soon as they opened the door, hugs were given, Peter (Aaron's co-worker) looked at me and said "How are you?" Most the time, which I am glad, it is asked how Aaron is, which is to be expected... but to have a spouse of someone with MS ask me another spouse who just learned their love of their life has MS, just made me burst. I cried and unfortunately cried some more. After, we ate and talked. Mainly, his wife talked. We listened and were in awe with her faith and her experience. It was wonderful, but overwhelming too. We both wanted so dearly to be like her, to be as faithful and optimistic, but we aren't, we are so far away from it. We had to keep reminding ourselves she was 17 years ahead of us in the disease. It actually made me think about my own experience...

Some of you may know when I was just 18 years old I was diagnosed with a disease called Nuero Cadio Syncope. It is somewhat related to the disease called Potts. Anyways, it was a very scary time in my life for my parents and I. The disease is pretty rare and not much research has been done on it. We went through a lot of tests, drugs, loops and circles. They told me all the limits I needed to put on my life, the diet, and the scary news of what my future might hold. A few examples were: I would never be able to bear children... and here I am on child #3, they said, I had to stop competing in my sports and do only mild exercise... I've now run 6 half marathons, 2 triatholons, 1 1/2 full marathons, 5 10K's and 10 or more 5k's at a very competitive speed. They said that I couldn't be in high altitudes or I'd get really sick... yet I was a ski instructor for 3 years and have hiked plenty of mtns. , andthey said  I would probably need a pace maker in my 30's... it's been almost 3 years into my 30's and my heart is beating just fine on its own! Anyways, I look back to the beginning of it all and remember the fear we had of the unknown. I now look at myself and I realize I rarely think about my disease, except at the moments each day where I experience some of the symptoms or when it flares up in me for a few weeks. Other than that, as mentioned above I have overcome most the things they said I never could do and am doing great. I know that my health problems don't compare to the disease that Aaron has. But, I can see how optimism, life, and things can get back to some type of normal, just as it had for this sweet women. A little hope sank in at that time for me. 

But, the days events had been so exhausting, I think that I couldn't think anymore. Home, that is all we wanted. We headed to my parents, to find some very happy girls. Thank goodness for our parents who have been here for us this week! How did we get so blessed, another tender mercy for sure! Then it was home and bed. I actually slept. I think every part of Aaron and I were exhausted. We are realizing quickly that this is completely out of our hands and that we are definitely going to have to rely on the Lord completely.

Today... Friday, June 28 (Day 5)

Peace after the storm. We both work up tired, but more rested than all week. We dressed and once again headed out the door. Back to my parents house we drove. While driving I called the specialist office Dr. Foley to set up an appointment. We were done with the doctor from the day before and were ready to see someone who only worked with MS patients. Of course, just as the ER doctor had predicted, they gave us the run around and said they could not get us in until AUGUST! I was like, no way! I told them about the ER doctor emailing the MS specialist and that he said they would say this and to not let this happen. I apologized for being pushy, but felt that we needed to get ins as soon as we could. She then was really nice and was like... "Ok, I will talk to the Dr. when he gets home from his trip and I will call you on July 9 and let you know what he says. That was all I could do. I hung up and once again my heart sank. We reached my parents house and as soon as we exited the car, my parents sweet neighbor Rachel came racing over. (She just so happens to be my OBGYN's wife) She hugged us and asked if we had learned anything. We told her not really and she asked what next. I then started to cry, because of my frustration with the Doctors office and the appointment. She was sweet, offered some words of advice. I think we both were just back down to the bottom again. Luckily, we were headed to the temple. Once there, obviously we won't share too much of our experiences, but... we both had some clarity, some eye openers and some tears. I learned a little about my role as his wife and he learned a little about his role as a Child of God. We sat a long time in the Celestial room. We cried, hugged and sat quietly. Once out I felt a little better and little more optimistic. Though no answers came, peace did. Though I don't know what is going to happen, peace still was there. The thoughts of an address Aaron shared with me the day before which were given by Elder Bednar in an address he made to students graduating from BYU Hawaii came to mind:

As we consider so many of the things that are occurring all around us today, we could perhaps find ample reasons to be afraid, to hesitate, and to wonder if things in our lives can indeed turn out the way we have long hoped they would turn out.

As you now prepare to go forth from BYU-Hawaii to work and to serve and to learn, some of you may question or lack confidence in your own ability to succeed temporally and spiritually.  Or perhaps you wonder if the Lord’s promises of support and —which you readily recognize and acknowledge in the lives of so many other people—will likewise be evident in your life.  You may be uncertain about pursuing an opportunity because you cannot foresee all of the details about how things will work out, and thus you are reticent to start and take the first steps on that path.  Or you may be so concerned about making a mistake that you fail to act in faith and press forward, and you thereby increase the likelihood of the very failure you fear.    

To not take counsel from our fears simply means that we do not permit fear and uncertainty to determine our course in life, to affect negatively our attitudes and behavior, to influence improperly our important decisions, or to divert or distract us from all in this world that is virtuous, lovely, or of good report.  To not take counsel from our fears means that faith in the Lord Jesus Christ overrules our fears and that we press forward with a steadfastness in Him.  To not take counsel from our fears means that we trust in God’s guidance, assurance, and timing in our lives.  I promise each of us can and will be blessed with direction, protection, and lasting joy as we learn to not take counsel from our fears.

As we exercise faith in Christ and trust in His promises, we can walk into the dark with the absolute assurance that our pathway will be illuminated—at least far enough to take the next step—and then the next step—and the next step.

I don't know what will happen, but I can trust with the Lord, we can keep walking forward and know that as we do move forward, strength, understanding and hope will come. We do have hard things ahead. I know that and recognize that, but we can do this and we will make it through somehow.

The rest of the day was a little crazy... phone calls one after another, visitors, more phone calls, screaming and tired little kids and many other things to get done and caught up. It was a rough week for us all. But we hope and pray that next week will bring more peace, clarity and hope.