Searching. . .

The search has begun for a doctor that will agree to treat me for Sarcoidosis. I don't think it will be hard, as I know of one doctor that would most likely do it for sure. The issue is the long term affects of steroid treatment, however at this point I am willing to try anything to get my sight back. I have an appointment with my Neuro-Opthamologist in Omaha next Thursday, we will see what comes of that.

So now that the Mayo trip is done, this blog may become very boring, unless I get inspired or something. I will continue to post about health issues, but right now our house is consumed with softball games and an upcoming dance recital. All of which are very exciting for 5 and 7 year olds.

Eliana did have her first softball game last night, they lost, but that is okay. It should be an interesting season. . .

Myka had dance recital rehearsal last night, and she has full dress rehearsal on Saturday with two shows of the recital on Sunday. Should make for an interesting weekend. . .

Home. . .

I am truly glad to be home. We have spent much time on the road the last few days, and we arrived home yesterday around 3 o'clock. Of course the first thing we did was pick up Myka from daycare, then we waited for Eliana to get out of school. Needless to say, she was very excited to see us. I am learning that I still have some of the effects of the lumbar puncture that was done on Wednesday. If I sit or stand for too long, my neck hurts to the point that I must lay down.

It is now back to the family routine. Jeremy is now outside mowing and I want to plant flowers, however, I cannot do this until he helps me till my flower bed. I am also looking at putting a new flower bed in so I am really excited about that.

We are still leaning towards a possible Sarcoidosis diagnosis. Some of the medicines I had been on before this trip really scewed the results, plus I would be in the very early stages, which makes it hard to diagnose. So I will keep you updated on that.

Plans

"For I know the plans I have for you," declares the Lord, " plans to prosper you and not to harm you, plans to give you a hope and a future. Then you will call upon me and me, and I will listen to you. You will seek me and find me when you seek me with all your heart. I will be found by you.". Jeremiah 29:11-14a

Should we EVER make plans???? Jesus brought this verse to me while I was sitting in the hotel restaraunt having desert. God knows the plans He has for me, they are good plans. Plans that will lead to my well being, plans that will give me the future that He has for me. They are not MY plans, they are His. When I came back from the MRI, I was still a little sad, because it seems like we are not going to get answers from this whole trip.

I had made plans for myself, when I found out that I was going to get to come here. Those plans were that I would get to see these doctors, they would take one look at me and say, yep this is exactly what is wrong with you. God had/has other plans. HE knows that there are issues with my brain, HE knows that my vision is struggling, HE knows why and in HIS time HE will reveal it. So now I have to rely on His plans and seek His wisdom. Sometimes that is hard to do, God will give me the answers soon, I hope.

Day Four: Done with MRI's

Okay so this one wasn't as bad as I was thinking it would be. The Tech running the machine and telling it which pictures to take was VERY good. He was telling me how long each one would take, I think these pictures will be good.

Thank you so much for your prayers, they definitely go me through. Well time to find something to eat, my eating schedule has been kinda screwed up this week. I'm hungry!!

So excited to come home tomorrow.

Day Four: Doesn't look like we will get answers any time soon.

So all of the tests we needed to come back as abnormal have come back normal. . .AAARRRGGGHHH. So furstrating. I finally broke down today. . .I am about at the end of my rope, wish there was something actually wrong with me. These people are supposed to be the experts and they are finding nothing, really kinda ticks me off. I was really hoping that the doctor would say guess what, we don't need the MRI's, but that didn't happen. Now I will be spending at least an hour on the MRI table today at 4. NOT FUN!!!!

PRAYER POINTS:

• Pray for answers, right now we have none.
• Pray that I don't continue to be discouraged, because right now I am completely discouraged and ready to quit.
• God's hand on the doctor's.

Day Three Cont'd: Pretty Sure We Are Moving In

I think the doctors have decided they like us so much, they are going to keep us. I now have to see a doctor, and have some more MRI's done tomorrow. I was so excited earlier cause the prospect of going home was looking like tomorrow, now it is looking like Friday morning. I love my little girls very much and I miss them very much.

The spinal tap went very well today. Oddly enough the thing that hurt the most was when they put the numbing medication in, it burned more than I thought it would. I'm just excited that we are taking steps towards answers. . .

Please continue to pray.

Day Three: Time to sit and wait

So Day three has truly been interesting. The good news is I got to sleep in. My appointments so far has been very early in the morning, and today I didn't have to be anywhere until 10:30. I very much enjoyed the extra few minutes of sleep.

Anyway, we first had to go to one of the hospitals here in town to have my spinal tap done by xray because of my shunt. They also measured my spinal pressure at the time, not sure if it was hi, low, or just right. From that hospital, we headed over to Mayo and now I am currently sitting on "stand by" kind of like at an airport. I have an appointment, tomorrow, but Mayo allows patients to come and sit and HOPE they can get in earlier. We are hoping for this so that we can come home tonight and not miss Myka's graduation from PreSchool. We understand that it may not work out, but then we will be spending another night in the hotel, something that is getting very expensive. I want to extend a huge thank you to my church family for the financial help that they have provided. It is definitely making a difference. THANK YOU!!

PRAYER POINTS:

• Pray that we can get in today and I don't have to come back tomorrow
• Pray that this new disease that they are looking into is the right one, it is a very treatable issue, that can be treated with steroids, a very good things. If you missed it yesterday, the new idea that they are looking into is called Sarcoidosis. Sounds scary but it really probably isn't.
• Pray for safe travel and that our girls are not driving my mother too insane.

I will keep you all posted as to whether or not we get in. . .

Thanks for checking back and for praying.

Day Two: HMMMMMM

Cruddy, that is how I would descirbe today. Sorry to be so negative, but it is becoming more and more evident that we are probably going to miss Myka's preschool graduation. I have a spinal tap scheduled for tomorrow morning 10:30. The neurologist we saw today wants to check my spinal fluid since I did have a recent episode with my eyes. She also brought up a new idea of a disorder/disease called Sarcoidosis. You can look that up yourselves! :) We are encouraged by the fact that this doctor is intrigued by the case and is wondering wy this new disease/disorder was never explored, discouraged about the delay in testing and such. Back to appointments, we will come back to the neurologist tomorrow and sit one stand by (hoping we can be worked in) if we can get worked in, we will most likely get to come home tomorrow. If we do not get worked in the we will not get in until 2:45 on Thursday. Please, please pray that we will get in tomorrow, niether of us wants to miss the Preschool graduation.

Day One: Good News and Ok News

Well I have seen one doctor today. She is a neuro opthamologist. I went through all of the same tests that my doctor in Omaha did and got just about the same results. She said that my nerves look really good and she was really happy with that. BUT, she did say that she is going to defer to the doctor that I will be seeing tomorrow for answers. She wants one of the Mayo radiologists to look at my MRI scans and all of the things she did today before making any decisions. She did however predict that I would probably have a spinal tap done tomorrow. I am not excited about that.

Anyway we have the rest of the day to relax, not sure what we are going to do yet.

We Made It!!!

So Excited to be in Rochester, MN!! It took us just over seven hours to get here. We loved seeing the sights, some things we hadn'et ever really seen. The coolest thing were the WIND FARMS, they were majestic. God has made a beautiful earth and we all need to stop and thank Him for it.

Tomorrow my appointments are at 7:30 and 9:00. Will update after that, have a good evening.

Busy Day

Tis the grand day before we leave for the trip to Minnesota. All the preparation that goes into something of this magnitude is mind blowing. I have yet to pack a suitcase, or even the girls' for that matter. (they will be staying with my mom) I have yet to get all of the laundry folded and let me tell you it amounts to just about two mountains, I can't seem to keep up. I have managed to make it to WalMart today, hopefully I won't have to go back. I have fed my children their lunch, and I have successfully procrastinated by writing on this blog rather than doing the things I need to do. So I will sign off for the moment and say thank you for the prayers, thank you for the thoughts, and I will come back later either tonight or late tomorrow.

Lacie

Preparing

I have been doing a lot of prep work behind the scenes for this trip to Minnesota. Most of that prep work has been spent on my knees in prayer. I know that somehow and in some way God will bless this trip and we will come home with answers. He has been such an ever present force in my life in the last three years that I know He is traveling with us on this journey.

Please know that I appreciate every prayer that any of you send up to His ears. I know He hears everyone and will answer them all in his own time. I sometimes struggle with how much people have been praying for me. Sometimes I wonder if I really deserve the attention that others prayers are giving me. God has blessed me with an amazing immediate family, church family, and Christ family. You all love with all of your heart and it humbles me. I am a part of that love, Thank you Jesus. I guess my struggle comes from that fact that I know that there are people in this world that may need prayer more than me in this season of their lives.

• Little Sophia Hope Wymer, 9 months old, brain cancer. she is at St. Jude right now receiving treatment. She is God's child too, and much more sick than me. Please please lift her up, pray for healing, pray for comfort, pray for peace.
• All the men and women over seas protecting us. Pray for protection, pray for peace in this great fight. If you feel so lead lift up Jeremy Straatmann, he is not over seas, but he is in the Navy, and those here at home are doing just as much for us here as those over there.
• The men and women fighting the floods in Nashville and beyond. Pray for dry land.

I am just one small part of God's amazing plan for this world. I intend to do all that I can to see His plan realized and I appreciate your prayers. God loves you and me.

Thank You!!

And so it begins. . .

Okay so I am posting now. . .

I wanted this here so that some of you will be able to catch up on this journey to Mayo and beyond. I am VERY excited for this trip, it has been a long time coming. I feel like I am finally going to get some answers next week.

For those of you just coming into the story here is a brief recap. . .

Almost three years ago, I got the worst migraine ever while at the Hillsboro Craft Fair. The following Monday I awoke with very bad vision, flashers and floaters everywhere. The world had definitely dimmed in two days. Naturally I was consumed with fear, I wanted to be able to see so I called my eye doctor. While at the appoinment, Dr. Gleason said that my optic nerves were swollen and that I needed an MRI of my Brain immediately. She was hoping it would show that I had Psuedotumor Cerebri. Instead the MRI showed that I had a significant amount of white matter changes throughout my brain. This lead the radiologist to believe that I may have Multiple Sclerosis (MS). This was a devastating blow, I have seen the effects of MS on my Aunt, I didn't want to go through that.

That began the three year journey I have been on. The Neuro Opthamologist I have seen since the beginning, fully believed that there was no MS and it was in fact Pseudo Tumor Cerebri and could be treated with a medication call Diamox. This medication worked for a while however at some point in the journey, it quit working. I believe it was about the time the doctors decided to try an MS medication. Once I was on that I became very puffy and everything started to swell. So I took myself off of that, but the damage had already be done to my optic nerves and the continued to swell. It came to the point where there was no more room to swell and something had to be done. One option was a shunt that would drain the excess fluid off my brain that was causing the swelling. The other option was something called Optic Nerve Sheeth Fenestration. This would have involved cutting small holes in the sheeth that lines my optic nerve again to drain the excess fluid that was causing my nerves to swell. The risk there was that my nerves were so swollen that the doctor would run the risk of cutting my nerve too, causing blindness. Naturally we chose the shunt. . .IT WORKED WONDERS! My nerves are now back to normal size, but there was damage from the intense swelling. . .damage that will never go away.

In my latest MRI, the white matter changes have no started to invade where the optic nerve meets the brain, causing some significant sight problems. Yes I can still see, yes I do still drive, and no I won't stop until the doctors tell me too. The last time I saw my neuro opthamologist (which incidentally was my third trip to Omaha in three weeks), I told her that I was DONE, decisions needed to be made and a treatment needed to be chosen. She agreed and said lets go to Mayo!!! Needless to say that was relief to me and I am ready to find out what can be done for me if anything.

Lacie

This is just the Beginning

Hey All,

I am starting this so that people can follow me on my journey to Mayo clinic and after. Will add more later.

Lacie