Friday, June 24, 2011

Eye Update

Yesterday I met with the neurologist. He suggested the next step should be a spinal tap. He did see some very small, very faint white spots on my brain on the MRI, which could be a start of MS.

I know I have to do the spinal tap - but I am so scared! I am so scared for the pain of it! I am so scared to find out the answers and diagnoses. I know I am so close to getting answers...I know I have to go through with it.

Next Wednesday I am seeing a retinal specialist, and on Thursday I am going to Marshfield clinic to see a neuro-opthamalogist. Getting "my eye" diagnosed has become almost a full-time job. I never would have thought I would be wasting all my vacation time this summer on a stupid eye. This Sunday marks one month since the flashing light and loss of vision began. I just pray there is something they can do to fix it.

Wednesday, June 22, 2011

Jesus in my heart

So last Friday Jason and I had dinner with Pastor Dan from the Assembly of God church in Shawano. I started attending the church this past winter. I love the church that I grew up in - but it is just to far away to be practical for my family.

This church is much different than what I am accustomed too. They sing a lot. But not just sing - they praise and worship God through their songs. At first I thought it was a little weird, but now I love it. Every service I see someone moved to tears. I have cried many times at one of the pastor's messages. That is why I have been so touched with this church.

I had a lot of questions. This pastor talked a lot about the rapture. It was a concept that I didn't remember learning a lot about growing up. I had a whole list of questions. My sister in law who attends the same church, offered to have us to dinner with the pastor.

It was so great to sit down and have a "Bible 101" talk with someone. I never understood the old and new testaments. I never understood a lot about religion. I think I learned it all at an age that I didn't really feel the need to know it. And at an age I was just going to confirmation classes because it was the thing to do.

The part that I took away most from the conversation was that you can believe in Jesus in your mind, but if you don't have him in your heart, it doesn't do much good. I totally get this. It wasn't long ago that I had a "come to Jesus moment" where I really felt him in my heart. I've always believed, and I've always tried to live my life through Christ, but now I really have him in my heart.

I wonder if my dad had him in his heart. I think he did. He never came out and said it - but I know the last month of his life he was very spiritual. The pastor said it doesn't matter when you claim Christ as your savior, as long as you do. I feel like I am starting a new chapter in my life. A chapter I can't wait to share and teach to my children.

Tuesday, June 21, 2011

Eye update

I had a second MRI with contrast last Friday. No surprise - it came back normal. So my opthamologist suggested I go see a neuro-opthamologist. Since there are none in the area, and they are hard to get into, I decided to see another opthamologist for a second opinion.

He got all of my info faxed over, and examined my eyes again. He came up with two potential diagnosises - Accute idiopathic blind spot enlargement syndrome or acute zonal occult outer retnopathy (AZOOR). He is leaning more towards the blind spot syndrome. Both things are very rare. In fact, I can hardly find anything on the internet about them. He said he has never diagnosed these before in his career.

So the next step is to see a retina specialist. The specialist may be able confirm one of these diagnoses. The good news is I won't go blind. The bad news is that the flashing light and the blind spot may never go away. I haven't been able to fathom that yet. I am just pretty happy to finally have some answers and to have found a doctor that took the time to diagnosis me.

Friday, June 17, 2011

Fathers Day

Well this weekend is Fathers Day. Such a bittersweet day for me. I love celebrating and honoring the fact that Jason is such a wonderful engaged dad to my kids. But the day also brings me so much sadness.

No card or gift to buy for my dad. No calling my dad and wishing him happy fathers day. No cookouts with my mom and dad to celebrate what a great dad he is. I can't give him any hugs and words of appreciation. Now all I can do is quietly remember him in my own mind. I hope and pray that he feels my love and appreciation - although we are seperated by life and death.

I try to remember my dad as the strong and amazing man that he was. But sometimes the visions of him weak and sick are all that I can picture. It seems like just yesterday that he was here with us. I just miss my dad. And I don't say it often enough. I miss my dad.

Monday, June 13, 2011


Hi everyone. Looking for prayers for me. I am on my 15th day of loosing sight in my left eye. I've had a lot of crazy issues going on, and I am praying for a resolution and diagnosis.

For 3 months now I have been having some episodes of wicked vertigo and dizzy spells. On May 5th when I thought I had a migrane. I started with some weird visual disturbances and numb lips. But I never really got a headache. The next two weeks I had some weird issues with my vision and hands. When I looked at my hands and arms they looked funny and they wouldn't do what I wanted them to do. It was very weird, and very hard for me to even explain it.

I went to the doctor and explained my vertigo and weird vision symptoms. I was told by her that maybe I had anxiety issues and should take some xanax. I was so mad. I knew that I did not have any anxiety, and I was not crazy. So I left there and made my own appointment with a neurologist, who in turned ordered an MRI.

The following week I was outside playing with my kids when I saw a flash of yellow light in my left eye. The next day my left eye had a constant strobe light in it - and I couldn't see out of the flashing part what so ever. Of course this was really worrisome to me, and very annoying. It's really hard to look at a computer screen, and even drive when you have only one eye.

I saw the neurologist last Monday, and she said everything on my MRI came back normal - although they didn't order one with contrast. She kept hinting that she thought this was all maybe related to a migrane - although I don't think that is the case. They drew 6 vials of blood from me to check everything you can imagine: Lymes disease, Lupus, thyroid, viatamin defficiencies, complete blood count. She also ordered a sleep deprived EEG and me to see an Opthamologist.

I saw the Opthamologist last Wednesday. He dilated my eyes and looked at my retina and my optic nerve. He said that everything looked fine. He chalked it up to my eyes aging, and the gel settling in my eyes. He told me to come back in a month - and to also come back on Friday for some visual feild tests, even thought he thought those would come back normal.

I was so frustrated. I got the feeling that he wasn't taking my eye sight very seriously. To make matters worse, Thursday night my right foot went numb. It feels like it is asleep - constantly.

I went back on Friday and had the vision field tests. The nurse indicated something wasn't right, and told me she wanted me to see the doctor before I left. The doctor came in and told me I had no vision in my left optic nerve. I wanted to say to him - duh, I know - that's what I have been trying to tell you. I also told him about my new symptom of the numb foot. I could tell that all of the sudden he believed me and was more worried about what was going on. He said he was going to call my neurologist and would have them call me this week.

So that is where it stands. I have to go back to the eye doctor on Thursday. I hope they can give me steroids or something to get my vision back. I just want to know what is wrong with me. Whatever it is. I'll get through it - but I want to know. There's nothing more awful than not feeling well, and having doctors tell you that you are crazy, or not taking it seriously.

Wednesday, June 1, 2011

Happy Birthday Nevaeh

Today would be Nevaeh’s 5th birthday. It’s hard to imagine that I would have a 5-year-old. I wonder what my life would be like if she was still here. I know it wouldn’t be easy – but is life meant to be easy? I know we would have a lot of challenges, and each of her milestones would be so much sweeter. All I can do now is remember the short six weeks she was here on earth with us, and look forward to the day I see her again. It brings me peace knowing that my dad is now up in heaven with his sweet granddaughter. We forever have a guardian angel looking over us.

Although the pain has eased in the past 5 years, it has never – or will never – go away. A parent should never have to lose a child. It is a pain and a deep ache in your heart that can never be explained unless you have experienced it for yourself. It’s like there is this missing piece of you. The day I lost Nevaeh, I lost a piece of my soul that I can never get back.

Everyone please take the time to hug your beautiful children today and tell them how much you love them. I know I plan to do that with McKenna and Macey. I also plan on singing happy birthday to Nevaeh tonight with the girls. I think McKenna is finally at an age that I can start teaching her and telling her about her big sister Nevaeh.

I am also very excited to announce Nevaeh's Rainbow Project. I really wanted to do something special in Nevaeh's memory. And I got thinking - why don't I sign up to provide care packages to the local NICU? I've always wanted to do something, and a light bulb clicked on. So I contacted St. Vincent's hospital, and they graciously accepted me offer to provide care packs and memory boxes. So I am in the process of buying all the things for the first few packs. I hope eventually to get donations to cover some of the items, or get items donated. It's a great cause, I just don't have a lot of money to support it. But I plan on giving every spare penny I have to the cause. I started up a website, that is a work in progress, but please feel free to visit it and pass it on: