That’s really all I can say. Abundantly loved, cared for, and blessed…
I have gone back and forth whether to post anything, but I think for myself included, it is easier to state it all in one place and have a place to look back on all that has transpired in the last few days.
Honestly, he thought it was a little bit of heaven. Basketball goals, putt putt, swimming and the flow rider surfing machine. We didn’t see him for hours.
On Friday evening during dinner, I began to have some visual concerns in my right eye. I believed there was something on my contact and asked the kids and Steve repeatedly to check to see if something was there. But they never found anything. I went to bed thinking it was nothing and hoping things would be cleared up in the morning.
Saturday morning we woke up early as it was excursion day. We worked out and then grabbed the kids for their own little basketball workout before heading to breakfast. At this time, my eye was feeling similar to the night before.
We had a fantastic time snorkeling and eating Mexican buffet in Cozumel, Mexico. I fell asleep on the beach which was glorious, but woke up to a worsening vision in the right eye. I knew something wasn’t right at this point and was blaming some of it on he Dramamine I had taken, although, I knew this was highly unlikely to be the cause.
After returning to the ship before dinner, I opted to lay down and skip dinner. The dinner time was unbelievable each evening. Sitting around the table together is always a precious gift–it truly is. Our schedule at home doesn’t allow it as much as we would like, so we soaked up these moments and they will be a highlight when looking back on this vacation.
Sunday morning I awoke with very little vision in my right eye. I described it as a curtain that just continually kept closing in. I could make out some shapes if I strained. I had no pain, which we would come to find out with my diagnosis, is generally common. Sunday I stayed to myself in the room. There were many things going through my head and all I wanted was to be off the ship. I came to find out that Sunday was a really great day for Steve and the kids. I am so happy about that!!
By Sunday evening, I had lost all vision and began the process of making a plan by being seen by the ship physician. He set up a referral to the Broward County Hospital ER for the next morning and made sure we were able to be among the first to disembark that morning. His thought was that I had a detached retina which would not allow me to fly home. This was our first obstacle as the kids had school and basketball practice to get home for. Not to mention we had plane tickets leaving at 4:00 that afternoon. This is where God began wrapping his arms around our entire family. Friends on the cruise were called about the possibility of Steve and I needing to drive home from Florida but were planning to send the kids on the plane. This was NOT setting well with me at all. After talking to our friends, we discovered they were on the same flight and could get the kids to the connecting flight!! How amazing God works!
After testing at the ER and two different referring ophthalmologists in Florida, it was determined I would be able to fly home but needed to be seen at KU Med as soon as possible. Can I just say, we flew into KC–not by our first choice when planning this trip. God is so in the details. And we continued to see this as the week has gone on.
My parents were picking us up anyway and gave us a car while taking the kids to meet Steve’s parents half way home. The blessings of family.
The ER was the beginning of many tests, many specialists, many diagnoses (some right and some wrong), and many tears as we wrestled with the overwhelming information and results being given throughout those first hours. By 8:00 am Monday morning a definitive diagnosis was given after 2 MRI’s that we were dealing with Optic Neuritis. Basically a loss of vision due to inflammation of the optic nerve. This is never normal–obviously!! Ha! Going blind in a matter of hours. So the puzzle now was to figure out why. Infections of all kinds can be a factor, but their biggest concern were the lesions they found on my brain linking a possible Multiple Sclerosis (MS as I will refer to it) cause. Of course, the Optic Neuritis can be caused by MS or can be the cause of MS in the future.
These findings led to full days of testing Monday and Tuesday along with the treatment of high dose IV steroids to aid in a quicker return of vision. They can not guarantee that vision will be returned to normal or any varying degree of improvement. However, as of today (Wednesday) I am no longer seeing total darkness. I see shapes and outlines with varying degrees of lightness. This has been so huge for me! And I am thanking God for this.
I can not say enough about the neuro team and opthomologists taking care of me. I don’t believe I have been an easy patient–nurses never are, are we? I have questioned the reason for tests. I’ve become irritable and teary and defiant. But they have been patient with the patient!! And by talking me through everything I agreed to all testing for MS. And all testing has turned out super so far!!! I have no other symptoms of MS. In fact, during my many neuro tests they have done by testing my strength I have made it a goal to kick as hard as possible. They can not find a thing wrong in that area!!!
The treatment plan was to stay here for 5 days getting IV steroids. My neuro resident whom has become a friend of mine went to bat for me with the entire neuro team to let me give myself my own IV injections at home. And guess what?! They agreed!!! We are leaving tomorrow after one clinic appointment. I am beyond thrilled!!!! And now…I’m going to have to call my neuro resident my best friend.
So–what it comes down to is this. My diagnosis is Optic Neuritis. Testing has revealed lesions suspect for MS for which I will be followed closely for by one of the best MS Specialists here in Kansas City at KU Med. I can not say enough about the team of people taking care of me. God knew. I will also be followed closely by a neurologist at home. This will be the new normal for me. And if anything else develops? We will go from there knowing we are in good hands. If nothing else develops? I will be ecstatic! I am choosing to believe that whatever vision is returned to me will take months–but if it’s sooner, it will be the biggest blessing ever. I have the absolute BEST people surrounding me. All of you! I can’t even begin to express how humbled I am by the love poured out through our friends and family. My Dad is right at this moment getting me KU Med center and nursing shirts in the KU Med bookstore which just happens to be next to the very nursing school I graduated from 19 years ago!! I kind of feel like life has come full circle.
More than that, you have to know how your prayers made a difference. I felt the huge arms of our loving Father holding me. I can look now and see God in the many, many details of the last few days. I am amazed more than ever by His presence made known to me when I was crying out for answers. A good friend sent me this amazing song this morning and oh how it overtook me. I know many, many people are suffering from different things that you may not have shared. I pray this song comforts you as it does me.