Friday, September 12, 2014

Our latest saga as described by Fridays

This MS thing has been a rollercoaster. It snuck in unexpectedly, and has begun to rule our lives.  I take that back. Our lives are becoming normal now, but for the last few weeks it has ruled our lives. It's interesting to me how many things have happened on Fridays. Of course, not everything happened on a Friday, but you can understand this saga just by looking at Fridays.

Friday, August 15th:  lost vision almost completely in my right eye. This led to many doctors appointments, including going to the ER.

Friday, August 22nd:  had an MRI of my brain.  ( after being a Neuro opthamologist earlier in the week)

Friday, August 29th: met with a neurologist and was given an official diagnosis of MS.

Friday, September 5th: had my third consecutive round of IV steroids.  ( after meeting with another neurologist earlier in the week, then having the first two days of steroids.  Yes, four days in a row at the doctor!).

Friday, September 12th:  this is today. It is the most normal day I have had in the last month. I still cannot drive, however, my eye is getting better. My hope is that it will continue to gradually improve.

What a crazy life I lead! I am so blessed in so very many ways. I am blessed to have the opportunity to slow down and enjoy life. I am blessed to recognize how many friends and family members care so very much about me and my family.  I am blessed to be able to remember that my Savior, Jesus Christ, knows everything that I am going through. He has felt it all. He has felt everything for everyone.

Wednesday, September 10, 2014

Eyesight is worse.

Today is very very hard to see. That is frustrating, especially because yesterday was a little bit better. 

I think it is just a reminder to make sure I don't do too much. Last night was late, with different events for different children. Then, baby C would not sleep very well at all in the night. I think he is getting my bad cold that I have been fighting since the steroids. I've been diligently hand washing, sanitizing, and sneezing/ coughing away from him, but the reality is we spend an awful lot of time very close to each other.

So, while my eyesight has never come all the way back or even really that close, it is definitely worse when I am fatigued.

Tuesday, September 9, 2014

Analogy of a funnel: addendum # 2.

I have been thinking more and I've had a really profound thought. It is so important to me, that I had to write another post, instead of adding it as another addendum. This blog is going to be, in large part, my journal. Since it is difficult to see, voice recognition helps me a lot!

I call this the analogy of a funnel. You see, there are a huge number of things that I either want to do or I need to do every single day.  It's like they're sitting at the top of the funnel, but only a few of them actually make it through the funnel throughout the day.

Many of those that make it through the funnel to actually be accomplished are the urgent ones, such as driving a kid here or doing something there, something that needs to be done today.  The urgent frequently outweighs the most important.

So, today, when CK asked how I was doing, I think he about fell out of his chair. Because my reply was great!  I have the opportunity to be the mom to my littles that I have been desiring to be. They frequently get put in their car seats and driven here and there and everywhere. But, without being able to see, we are singing itsy bitsy spider, and building with blocks, and spending time together that I cherish. Itsy bitsy spider sometimes does not make it through the funnel.  Sometimes it does, but other times the whole day is spent with driving.  In an effort to take care of my olders, the littles sometimes do not get the best of me.  For now, it is time for the older kids to sacrifice for the good of the youngers.

I think in a different way than I ever expected, this optic neuritis is an answer to my prayers.  I get to be mom to my little ones. What a blessing!

Another Day

So, here I sit with another day in front of me.  I am trying to at least partially document this time in our lives. Blogging is one way I can make that happen.

But, first of all, screens of any sort are hard on my eyes. It is hard to see. So, I am doing these posts through voice recognition. They may not always turn out with the punctuation I intend, but I think the content will be preserved. I do check it to make sure that its nothing off the wall. But if I miss something, and you ever read something weird, chalk it up to voice recognition.

Today I am sick. Sick. Sick. Sick. I am guessing it is steroid related, since they said I might feel flu like symptoms.

As I was sitting here a little bit ago, I was thinking about how if it wasn't for the optic neuritis, I could live my life relatively normally, at least for now.

It is the vision that is the problem. It is not being able to see, not being able to read, not being able to drive.  This is tough. Today is tough, because there is no more divide and conquer. C has his first football game and I want to be there, but K is required to sing the national anthem at a volleyball game with her choir. We cannot do both with only one driver.  I already would have been torn because I would like to be at both, but it is hard that I don't even have a choice. CK doesn't even have a choice. He just has to drive.

So, I will keep praying that my vision improves, keep reading up on what I need to do to take care of my body as best as possible, and keep remembering how very many blessings I have.  You see, even with this SMS, I am one of the lucky ones.

Addendum and an epiphany:  I wrote the earlier part of this post a couple of hours ago, but as I have been thinking about it, I came to a realization.  I realized that with my personality, if I felt completely normal, it would be difficult for me to slow down to take care of myself.  The vision problem forces me to slow down.  With the diagnosis of MS, I would have had the best intentions of slowing down and taking it easy to protect myself, but as life gets busy, as the kids need something, as my calling becomes intense, I would probably just do it. This, in fact, could be detrimental to my health. I am beginning to see that my eye problem is a huge blessing.

Monday, September 8, 2014

Life - as seen through the eyes of V

Today is the first day of the rest of my life. Every day is the first day of the rest of my life. This MS diagnosis and all that comes with it has really rocked my world. In time, I will adjust. It is hard to think that I might never again be able to drive, that I might not be able to see my kids faces very well ever again, that I can't be out in the heat gardening, etc..  But, when all is said and done, I can do this. It's hard, but I can do it.

Now, on to my little V.  We've had a tradition for a couple of months where when I put her down for a nap, I asked her what does mommy love? And she always replies hugs and gives me a big hug. Well, today, I asked her what does Mommy love? And she replied going to the doctor!

This is truly our world through the eyes of an almost 2 year old.

Saturday, September 6, 2014

Seven months

Life is very hard right now....but this little guy just keeps growing.  I love him more than I could ever express.

Friday, August 29, 2014

Official Diagnosis

After going to many doctors, I went to a neurologist today. He looked at my MRI, and confirmed a diagnosis of MS. I am doing okay. I hate it that baby C and V will never remember their mom without MS. I know that the problems that come with MS ebb and flow, but that I will be ok. I have been blessed with many many friends and many many associates and many many family members that have shown such support and love. I am on cloud nine with all the support and joy I feel from it.