Finally a diagnosis

 I saw the specialist at the IU Center of Neurology yesterday.  The doctor I was scheduled/saw is the director of the whole program and started this program many many years ago, so I am confident in his diagnosis.   

After a thorough exam and going over all the tests I had previously had, he believes that the optic neuritis is a one and done type episode.   It’s official name is Clinically Isolated Syndrome.   While there is no 100% guarantee that it won’t progress into MS, his experience suggests that I am probably in the clear.   He recommended another set of MRI’s in July of 2023 to ensure no new lesions and to take a vitamin D supplement.   And to contact if any new symptoms arise.

Optic neuritis can’t take 6-12 months to heal, and while my vision may improve, it also may stay somewhat blurry.  The doctor said there isn’t any treatment that is proven to improve the healing process, except the iv steroids that I already had.  He had great things to say about my neurologist which is comforting to know she is the best, but I already felt she was. 

I am relieved to finally have a diagnosis.  It brings peace to my mind that we have some answers and a plan. For those who read this, thank you for your thoughts and prayers.   

Overwhelmed and Exhausted

Everything seems to be crashing down this week.  

Both my girls have situations at school that make getting up and going tough.   One has to deal with a teacher that doesn’t like that she has an opinion and knows how to intellectually argue said opinion.  The other is dealing with things that were spoken against her that are not true.  Lies and dirty name calling that have made her physically sick.   It breaks my heart as mom.  

I have been in contact with the school administrators and we are working out the solution.  BUT right now I question our family’s decision to send my girls to public school.  Why didn’t I get a job and sign my oldest up for dual enrollment through a local junior college?  Deal with my youngest one’s attitude and resentment?   Why did I allow them to enter the lions den?   

I know they will face similar situations in their adult lives, and these conflicts will build them to be stronger women, right?!?    😩   But they are not grown and I want to shelter them from the pain, carry their burdens for them.  That will never change, no matter their ages.  

On top of all this, I have my appointment at the IU center of neurology next week.   I have had some eye pain in my left eye this week and a migraine like pain in my right eye that felt like it would pop out of my head.   I haven’t shared this with anyone bc no one needs one more thing on their list to think about.   But my brain is going through all that could be going wrong-blindness, brain tumor, MS, or many other unknown ailments.  I

If you read this, please just keep my family in your prayers.  Pray for strength, peace and answers.  Pray that we feel His presence in a very tangible way.  Pray that my girls treat each other with compassion as both are dealing with things that the other doesn’t understand.   Sometimes it’s easier to show kindness and compassion to friends than siblings, but that isn’t how it should be   So, just pray for my family during this time   

Summer turns into fall 2022

 Quick update post:

Saw the neurologist and my spinal tap was clear of any signs of MS.  That is awesome news.  BUT I showed some muscle weakness with my right leg.  ugh

So, since we still do not have an answer for why my vision is still blurry or the cause for my optic neuritis, she recommends that I see a specialist at the IU Center for Neurology in Indy.  My neurologist said that they will have access to tests that she doesn't and that even though it doesn't appear to be MS, there is a small percentage that have clear results.   

When I received the call to set up the appointment with the IU Center for Neurology, I was expecting a 4-6 month wait to be seen.  That wait is in fact only 5 weeks.  I asked why so soon?  Depending on the potential diagnosis and symptoms, we get some in quicker than others.  (Some are not being seen until August of 2024).  Soooooo......not sure exactly how I feel about that.  

I will update again after I see the IU doctor. 

My Summer 2022 in a blog ........

 June 2022 

I get up and have pain around my eye.  Pain when my eye moves, pain when it is touched, pain.  I figure that I must have hit it, maybe in my sleep, and caused the pain/soreness.  Only a few days later, I wake up to blurry vision.  So, let's call and see the eye doctor.  

The eye doctor comes in on his day off (bc my symptoms are enough to merit an emergency visit) and runs many tests.  The diagnosis is retrobulbar neuritis with a referral to my family doctor and neurologist for further testing.  The symptoms, diagnosis and with my age makes me a candidate for multiple sclerosis (MS).  

I see my nurse practitioner who agrees with the eye doctor's assessment, schedules an MRI and refers me to a neurologist who gets me in extremely quickly (normal wait in 4-6 weeks, I was scheduled 2 weeks).  

July 2022

After the MRI, I see the neurologist and she let me know that the MRI looks great, but she wants another set bc she really wants to figure out what is causing the vision issues.  She is leaning toward clinical isolated syndrome, which could be the start to MS or just a single event that may never happen again.  

She also sent me in for IV therapy to speed up the healing process for my vision.  I am not sure if it really helped since my vision still fluctuates between how blurry it is depending on the day.  

More MRI's that show only one spot of concern on the optic nerve.  

August 2022

The neurologist now wants to call it relapsing remitting multiple sclerosis, but she can't officially call it that without more tests.  So, let's have a lumbar puncture.  And tells me treatment options to research.

September 2022

Lumbar puncture is just as I thought, uncomfortable and wouldn't recommend it to anyone.  Now I am waiting for my next appointment with the neurologist in October.  

While waiting I am researching treatment options (if MS) and trying as I might to figure out what else it could be.  From my understanding, I do not meet the full criteria for MS, but I am also not a doctor. 

I am trying to write down any and all questions that I may have to ask when I go back.  Honestly, I wasn't prepared for the August appointment to go the way it did.  It was shocking to hear the tentative MS diagnosis, even though I knew that was an option.  So, I am trying to be more prepared.  

My pain is gone, but I am still dealing with blurry vision.  Some days it seems almost normal, other days my vision is just as blurry as the worst days.  

This post is just to document and track what is going on with my health.  

Times Change

It's been awhile. Things have changed. 

Homeschool? Not this year. 

Public School? Yes - and it's been okay. 

I have loved most all my years of homeschooling and wouldn't change it. Our family had many years where we were together - 24/7. There are good and not so good times. Just like every family, we don't get along every second of every day. There were days that it was best that we stayed in our own rooms and other days that we hung out all together. (All that to say, if you homeschool, don't let those moms who say their kids never fight get to you - they are lying! I had a mom tell me that, and it made me feel so much less of a parent bc my two 'angels' had been at each other's throats. I believed that lie for a time, then another mom, a more seasoned mom, told me that whoever said that needs to get out of their bubble bc they had been around that mom and her kids were heathens. lol) 

Now, I loved getting to teach each girl how to read, write, and all the fun things we learn as we grow. I loved getting to mold the curriculum to their personal learning styles - which were different for each girl. Watching that 'ah ha' moment happen during a subject is such a great feeling. Getting to know my girls and develop a friendship along with a mom/daughter relationship is a wonderful thing. However, homeschooling is a calling, and sometimes that calling gets shifted. 

But this year things got shaken up. We offered the option of public school to both girls and they both decided to give it a whirl. We registered and got them off on their first day and they have adjusted well. One loves the school atmosphere and one is tolerating it. lol 

There has been ups and downs in the first 9 weeks of classes, but for the most part, I think they are doing great. Both are taking dual enrollment courses and one is in an A/P class. One is straight "A's" and one is a bit more diversified in grades, but still doing well. We have gone to the football games, homecoming dance and other activities. We are transitioning slowly to a new routine. We are also enjoying those breaks more. 

I am still on the struggle bus on how to spend my days. I miss my girls. I feel kind of loss as to my role in the family. But that is for another post. So, I spend more time praying, and my house seems cleaner. But I am considering picking up a part time job, maybe.....eventually. 

We will see how it plays out over the next few months. Well, I may or may not try to keep this blog more up-to-date, but either way here is a quick refresher on my life.

The Journey

Invasion conference has started at my church. It's an annual gathering that is powerful and I look forward to it every year. Yesterday during the day, I was thinking and talking to God about how I just want to touch his hem, like the lady with the issue of blood. I wanted instant answers, instant healing, instant results. But then I went to service and was listening to the speaker. He was teaching on Jairus (daughter was dying, got Jesus and was taking him to his house to heal his daughter when the woman touched His robe). Then the speaker says - sometimes we want the instant relief, when God wants to see if we will stick with him through the journey.... WOW Am I praying for instant relief, when God wants to see how I will stick with Him through the journey???? And how am I doing with that? Am I frustrated bc it's not happening on my timeline? Am I drawing closer to God through the journey or am I pulling away? Am I looking more at my problems than to the Holy One? Am I distracted bc I lost my focus? God orchestrated the night. He knew what my thoughts and prayers would be and then gave the speaker a word - for me. You see, Jairus' daughter was worse when Jesus "finally" got to the house, but God did a greater miracle - he rose that girl from the dead. He didn't forget that Jairus had a need, a desire, he took Jairus on a journey and bc Jairus didn't quit, didn't get distracted, didn't lose focus, Jesus did greater things than Jairus thought. Don't lose hope if the journey is long, or you feel like you're overlooked....keep your focus on Jesus and stay the course. He has great things coming your way - just hold on! “But Jesus overheard them and said to Jairus, “Don’t be afraid. Just have faith.”” ‭‭Mark‬ ‭5:36‬ ‭NLT‬‬

Friendship 1

God sometimes has to tear down something before He can rebuild it the way He wants it to be built. Wildflowers by Robin Jones Gunn

How can something written in a fiction novel move me to tears? I love to read, Christian fiction, in the summer or winter ot fall or spring. It is a great way for me to relax while the girls are playing or hanging out. I get to sit in a chair under my umbrella and relax listening to my girls have fun. I am the type of reader that can just into a book and really feel apart of the story. Seriously, I find myself speaking German-Dutch after reading an Amish themed book. :P

Anyways, back to my original thoughts...

The hardest thing that I've had to deal with is ending friendships. I don't make friends easily. I am not the type of person others are drawn to. I have many acquaintances, but not many friends. I am normally okay with that. But recently I've felt a tug towards cutting loose a few people. This is hard. But in reality I haven't felt 'safe' in these relationships in a long time. I know that God is leading me this way, but it would be nice if he could just send one person I can confide in, trust in, be myself in. Someone who doesn't feel threatened when they don't know all. Someone who won't run and tell the others the things spoken in confidence. Someone who won't ignore you when someone better is around.

You see, I know people who have hurt others by their actions, who up until recently I thought were victims, but it has been revealed that they were really the cause.

I ask God - send me a friend! He responds - no earthly person can fill that role.

Philippians 1:15-18 "It is true that some preach Christ out of envy and rivalry, but other out of goodwill. The latter do so out of love, knowing that I am put here for the defense of the gospel. The former preach Christ out of selfish ambition, not sincerely, supposing that they can stir up trouble for me while I am in chains. But what does it matter? The important thing is that in everyway, whether from false motives or true, Christ is preached. And because of this I rejoice. Yes, and I will continue to rejoice."