Our Christmas Miracle

December 12, 2013, will be a special day in our family. That's the day that my sweet nephew got the heart and double lung transplants he has been needing so desperately for over two years. It was a mix of emotions for that day. Excited that they had found a match for Weston. Nervous about a serious surgery. And deep sorrow for the donor family who during their darkest Christmas chose to give the Gift of Life and help others. I have been praying for them since we found out Weston needed a transplant. Praying for peace and comfort. We will always remember them in our prayers. A friend of my brother and his wife wrote about Weston and his transplants. You can check out her article here.  It was beautifully written and has some precious pictures of Weston. Thank you for praying for Weston and please continue to pray for his recovery and for his donor family.

Weston with Santa 

Five Years

I had another MRI and a follow-up appointment. The results were good. I had no new lesions and no active lesions. Woohoo! It looks like I am responding well to the new medicine. I had some blood work done to check my white blood cell count. My white blood cell count and other lab work looked good. My vitamin D is still lower than what my doctor wants, so I am going to take prescription vitamin D for 3 months. If everything continues to go well, I go back in 6 months. I received the call about my MRI on my birthday. It was great to have such good news on an already great day!

Five years ago last week I was diagnosed with MS. I remember being in the office actually thinking that the doctor was going to tell me it was not MS. I was shocked when he said it was MS. I was shocked but also relieved to know what was going on with me. There is so much information out there and still a lot of things that are not known about MS. It behaves differently with everyone so it is impossible to predict what MS will do in each person's life. They said it was good that I was diagnosed young and that I am a woman. They said that usually people like me are still walking 10 years out. I couldn't decide if this was reassuring or not. On one hand, I can look at it that it doesn't immediately put you in a wheelchair just because you have MS. On the other hand, I started thinking only 10 years? These first five years have gone by very quickly. I try to remind myself that not everyone with MS loses the ability to walk or loses their vision or the other things on the list. It could also happen to me tomorrow. I could get hit by a bus, too. Only God knows the number of my days and how I will live them. I am praying that I keep my focus on Him and not the MS. I am so thankful that I have God in my life. I also remember five years ago feeling a peace that could only come from Him. This diagnosis didn't ruin my life. I still have an amazing life! Five years and still trusting in Him. :)

Jonah

" Then they took Jonah and threw him overboard, and the raging sea grew calm.  At this the men greatly feared the Lord, and they offered a sacrifice to the Lord and made vows to him." Jonah 1:15-16 (NIV)

I heard this verse on the radio the other day. Isn't that awesome how God works? God tells Jonah to go to Nineveh and he runs away. Did God want him to run away? No. However, because of that decision, the men on the ship came to know the true God.  

I have made decisions that were not the best. However, I do believe that God can still use me. He still loves me. And when I finally leave this place, I will get to go HOME to be with HIM. It's the same for you. Even if you have made wrong decisions, He still loves you!

I try to imagine Heaven at times. All of the worst things of this world will not be there. Even better yet, the most wonderful things here on Earth cannot compare to the wonderful, greatness of Heaven. I don't want to leave this world or my family and friends, but I also long for Heaven. No more worries, pain, tears, cancer, need for transplants, or MS. Have you had a verse that has spoken to you lately?

New Meds

I decided to take the advice of my doctor and change my MS medicine. It took a little while for the insurance to approve it and for the meds to arrive. I was able to start last Sunday. It is a pill that I take twice daily. For the first seven days it is a starter pack with a half dose in each pill. There are some side effects that include stomach problems. The nurse told me to take the pill with a full meal and not just a small snack and that should help with those. So far, I haven't experienced any stomach issues. Hopefully that will continue when I start the full dose. The only side effect I have noticed is some flushing that lasted a few minutes.

I have to tell you that I don't miss the injections. I am having to figure out how to plan my breakfast and supper for around 12 hours apart. The medicine works best when I take it at 12 hours, but the nurse did tell me I can have an hour before and after, too. So if I have breakfast at 7 with my pill, I need to take my next one between 6-8. It's not difficult. It just makes me think more about meals than I usually do. 

I have my follow up MRI and doctors appointment scheduled for November. Hopefully, my doctor will be able to get some good information from my MRI to see if this new medicine is working. Regardless of what we find out we will just take it one day at a time. We are doing our best to pray more and worry less. It is hard on this planner, list maker, not always the most patient, type person to think about the what ifs with this crazy disease and not worry. But I'll keep on trying. :)

New MS Update

I haven't posted in a long time. Several reasons really. Busy with kids, not much to report, and just being in an overall funk with the blogging, not knowing what to write and no pictures. However, I have been to see my neurologist and there have been changes. I went to see him because I have been having a weird sensation in my throat. It's hard to explain. It had been 10 months since my last MRI, which was stable, and he ordered a new one and some lab work. My labs came back good except for my Vit D is low. I'm going to be taking extra to fix that.

My MRI came back with new lesions and one that was active. The doctor is sending me to get IV steroid infusions for 5 days, repeat MRI in 4 months with a follow up visit, and he is mailing me information on switching my MS meds. My current MS medicine is a daily injection. The new one would be a twice daily pill. I would like that part of the change.

The infusions are interesting. I am going to an infusion center because they don't do it in the doctor's office anymore. I have finished with 2 of the treatments so far. They don't do my kind of treatment on Sunday, so my other 3 start Monday.

Here I am day one. The room looks like a regular hospital room. My visit was about an hour and a half. My medicine took about an hour.

I think when they take off all that tape it hurts worse than the stick!

When I get the steroid infusions I get a strong metal taste in my mouth. Hard candy helps. I forgot that water does not help. But the book did with making the time go by faster.

Here's my wrap for day 1. It has purple hearts that matched my shirt. :)

Here I am day 2. Not sure if you can tell but my face gets flush with these treatments, too. It is very flattering. Haha! I got to take my hubby with me this time. He got off work early. We chatted and played a trivia game on my phone.

 Here's my wrap for day 2. Green for my green shirt. My nurse is keeping me stylish!

3 more treatments to go. They can make me a bit moody. I haven't noticed it too bad so far. I joke around that I could Hulk out any minute. This isn't the best news, but it could be worse. I am still feeling pretty good. I'll keep you posted on more changes.

MS Walk 2013

We had a great walk this year. The weather was nice. Not too hot and it didn't rain on us. It felt like there were more people this year, but we were also closer to the front of the group this year. Here is my awesome team.

They had lots of booths set up to visit. They had Krispy Kreme donuts, a guy flipping pancakes, bounce houses, a magic man, face painting, to name some of the things.

Magic Man

Donuts!

Face Painting

A new thing this year was signs to share your reason for walking the MS walk. I thought it was very cute idea. 

They also had some mascots, a dance team, local tv anchors, and a dj. These mascot people were so funny. They would try to sneak up behind people. They ran around like crazy. It was really amusing. 

My favorite part is walking with my loved ones. I love any reason for us to get together. We had an amazing group this year. We were also missing some important people, but I know they would be there if they could. 

I have so much support from my family and friends. I can't imagine life without any of them. This year's walk was amazing and I can't wait to do it again next year.

A Wibbly-Wobbly Timey-Wimey Birthday

Our Little Bit turned 8 this year. She wanted her theme to be Doctor Who. It is a British show that we watch on Netflix.  We went again to the gym for her party. Some days I feel like the kids could live there. They run and jump and flip everywhere. We had snacks and cake. There's an episode of Doctor Who when the Doctor eats fish sticks and custard. So we made vanilla pudding and had sugar wafers for the fish sticks. Some of the kids didn't know what all the snacks were about, but they enjoyed eating all the food!

Marshmallow Adipose 

(From an episode of Doctor Who)

The birthday cake says Happy Wibbly-Wobbly Timey-Wimey Birthday

and cupcakes with little bow ties.  

The birthday girl

She has brought so much joy into our lives. She is smart, kind, funny, and stylish. We are truly blessed by God that she is in our family.