Wednesday, June 17, 2009

It's Going to be Ok, Maybe not What I Want but It Will Be Ok

I have been away for awhile, there was a week straight that I was having seizures close to twice a day and in bed the entire day. Those were dark days for me so I spared you all from what would have been some very negative postings. Today and yesterday have been pain and seizure free, I haven't had that in a very long time so I have been enjoying it more than I could ever explain.

I went to my nero doc last Wed. and the EEG was normal, which made me go into my emotional crying spell because I thought for sure something would show up. I'm definitely having some type of seizures but he's not sure why my EEG would be normal. He put me on a seizure medication Depekote, and even the generic is ridiculously expensive so we have been buying a week supply at a time. But thank God we found out about a program called Kentucky Home, they help get your prescriptions directly from the pharmacy companies when you have no insurance. So I met with the worker from there yesterday and took the forms to my doctor today and he filled them out and this program will pay for that medication for a year then I have to re apply. That will save us $2088 a year. Thank you Jesus.

As for me not being able to walk some days, my nero has no idea why that is. He was very busy and only spent 5 min with us this time. His waiting room was full and I am hoping the next visit will be better. The meds he has me on now seem to be working together and I have been having good days lately. I'm hoping they will last and that I can go back to my 'normal life' or the way it used to be but I have a feeling I am going to have to adjust to this new normal and if I just could have more good days than bad I could be ok with that. Tonight I cooked for the second time since I have been home, it was such a great feeling, I even mopped the floors and finger painted with the kids. Boy it's the little things in life that you think you would never miss but when you can't do them those are the things that mean the most to you.

Still finding it hard to pray which is really bothering me. I'm still using music to kind of 'talk' to God but it's hard to even form a prayer out loud right now. I didn't think that would last this long. I thought I would be over that by now. But here I am.

My mom and aunt finally got a van (used of course) but found one with a pull out wheel chair ramp for my mom so now we can take her out and to her medical appointments. I say we but I really mean my aunt and Hubby. I still can't drive and went shopping for grocery's with my aunt yesterday but finally had to get in one of those motorized carts because I get so tired from walking. But I am hoping we can all go out to eat for Father's Day this weekend. My mom has not been out to eat in almost 2 years.

I am so grateful to have them here with me, but I have to be honest, there are times when I just want my house back. We just bought this house last July, our first house and I don't feel like we got to enjoy all of it enough before giving part of it up. Horrible, I know. But the minute I think that I also realize it was God's plan because I don't know how I would take care of my kids some days without my aunt here. I just hate that I can't take care of my mom like I did in those first few months of them moving in.

This may seem jumbled, that's only because that is exactly how my mind is jumbled with all these things swimming around in it. I hope you can make sense of at least some of it anyway.

Thank you, for reading, for emailing and most of all for the caring and the prayers.
It's going to be ok, maybe not what I wanted or what I envisioned for my life with small children but it's going to be ok.


Sheryl said...

as you know, i could have written this post myself. obviously we don't have the same things going on, but i know what it's like to have your "normal" ripped away in an instant. i never thought i would be 2 years into this and not healed. but God...He knew...and He has provided!

it's hard, boy i get that!! so glad that you know you can come here and be real and find support.

love ya and praying joy into your days.

He And Me + 3 said...

I am so encouraged by your posts. You are finding the silver lining and knowing that God will get you through this. Your suffering is not without a purpose.
Praying for you.

Girl Child said...

hi kee.. i am sorry that you are going thru such a difficult time right now. hopefully the meds (the free meds yay!) will help you have less symptoms. i have to go get the kiddies ready, but will email u in a bit. take care.

Laura said...

I am so thankful for your honesty about your journey.
Praying for you my friend. I love it that you are open about your journey and thorough it can GOD be glorified!

christy rose said...

You are so right!! It is going to be OK!
Praying for you today,

Carrie said...

So glad to hear you will receive some help with medication...but sorry you are still experiencing seizures with no real diagnosis :(

Keep your spirits up...God knows your needs even without you knowing how to pray for them :)

You're in our thoughts and prayers...take care!

Tanya said...

I'm so glad to hear things are looking up for you. Did you hear from Medicaid, will they be able to help with the bills? I hope the meds is all you need to get on your feet, that would give you time to figure out the cause of it all and keep you well enough in the process.
Praying for you as always