I found this poem, written by Cindy Nicholson, which also has Chiari. It is wonderful and tells you exactly how Wesley feels.
Like a thief in the night you stole my life from me
You're always hiding in the dark, come out, where I can see
After years of suffering, I finally know your name...
Now that I know, my life will never be the same,
That fateful day I'll never forget which wasn't too long ago.
You caused my head to explode and my heart was pleading "no"!
Symptoms can be there for years 'till you raise your ugly head,
You even steal my sleep away; I no longer sleep in my bed.
The pains in my head sometimes stay all day.
Please learn to love me and take the pain away.
Sometimes you are patient, just waiting to attack,
Where will the pain be this time? In my head, my neck, or back?
The pain in my back is like a twisting knife,
Take what you want but give me back my life.
You try so hard to visit each day,
Causing me pain, keeping my smile away
Right now, I feel alone, even though I know you're there
Lurking in my head, causing more pain for me to bear.
Life is not about suffering, but you give us pain each day
We, Chiarians together, will fight you all the way.
How can Doctors help us, if they don't know what you do?
We are not hypochondriacs, our problems are you!!
When will all the pain and suffereing end,
Please let me know, so I can be your friend.
Why do you hurt me so bad, can't you learn to love me,
Just take the pain away and set me free.
Chiari, if you could grant me one wish, all I ask of you,
Is that you haven't passed this curse, onto my babies too!!
I feel sad today. It is Fathers Day and Wesley has a terrible headache. My heart breaks for him. Tomorrow I am going to start sending the CT Scan and I want to do a write up of Wesley's whole story to send to new Dr.'s. So that is my next goal. If anyone comes across my blog and knows of a surgeon that specializes in Chiari, shunts, or both, please please let me know. Texas or Oklahoma would be best, we just do not have the money to be traveling the world. I am going to call the one in Austin on Monday and find somemore details. Just feels like there is not much hope, but I have to hold on to everything I can and not give up.
Sunday, June 20, 2010
Thursday, June 17, 2010
Graduation has come...
Tomorrow my three month training is over. We actually have a little graduation and I get a certificate. I am just ready to put it past me. It has been a tough. So Monday I am on my own. Just me and my clients. Woo Hoo!! I will let you know how this next chapter goes.
Speaking of tough this week has been a very tough week. Wesley is still not doing well. I am looking into a Dr. in Austin. On Monday I am going to get a copy of his CT Scan and send to New York, just to get his advice. There is no way we can go back and forth to up there; but I want to hear what he has to say. He can maybe give some advice. And, I will continue research and we might try and get into the Austin Dr. unless I find another option. In the meantime pray for us. We need it; everything feels like it is holding on by a thread.
Speaking of tough this week has been a very tough week. Wesley is still not doing well. I am looking into a Dr. in Austin. On Monday I am going to get a copy of his CT Scan and send to New York, just to get his advice. There is no way we can go back and forth to up there; but I want to hear what he has to say. He can maybe give some advice. And, I will continue research and we might try and get into the Austin Dr. unless I find another option. In the meantime pray for us. We need it; everything feels like it is holding on by a thread.
Tuesday, June 15, 2010
A New Day
We got home about 12:30am from the ER. Finally after a lot of pain medicine, his headache got under control, somewhat. It never goes away, but it was much better. Today he still does not feel good, but not near as bad. It has been a while since I saw him in the pain he was in last night. So hard to watch, when there is nothing you can do but hurry the nurse up. A CT Scan was done and the ER Dr. did not see anything alarming. I did not figure they would. Basically another bad Chiari/Shunt headache. The good thing is, we got a CT Scan. The New York Dr. would like us to send him a copy, to see if he can shed light on anything. He also gave me the name of a Dr. that is closer, that he highly recommends.
I also got the name of a Dr. in Austin that a sweet lady that reads my blog gave me. I am going to start researching these two Dr.'s. I know that there is no cure for Chiari and I know that just because you have surgery does not mean you are not going to still be in pain. But, I believe in my heart that there is something that can at least help him go a day without feeling sick and having unbearable headaches. I know that his body hates this shunt and trust me we hate it too. But, the Dr.'s are saying at this point he can not live without it, so we have to work with what we have.
I will keep you posted on where the research leads us. I will admit I was mad at God last night, I have since said I was sorry. I am just struggling right now with understanding why good people suffer, why kids get cancer, why some young people die so soon. I am struggling with that right now. But, God is always near me and I all I can do is keep leaning on him.
I already see two things that have came of the last 24 hours. One is; the New York Dr. needed a CT Scan and now we have one. Also, any new Dr. we see will want to see a copy. This is an answered prayer.
Two is; God keeps showing me how blessed I am to have Wesley. There have been times in the last couple months that I wanted to pack my bags and the kids bags and run. Even though none of this is Wesley's fault and he has not asked for this, it is still very hard on me. But, that is selfish of me; can you imagine how Wesley feels? I want our life to go back to how it was two years ago, before this rollercoaster ride.I want Wesley to be able to enjoy being 31, enjoying doing the things he loves to do that he no longer can. And the reality that it will never be that way, is very hard.I do not like to say never, but we know since there is no cure all we can do is work on getting him as comfortable as we can. God has once again reminded me how much I love Wesley and how I would never leave him. How blessed I am to have such an amazing husband. He is such a strong man.
So, today is a new day and we move forward.
A bit of an update on my job. For the ones that do not know I have been going through a three month training school and it has not been easy. I have done a lot of traveling and being up at 5am and not laying down until midnight. It has not been easy, but Friday I graduate. I have made it. As hard as it has been, I love my job. I have not once thought, ugh I do not like this. I really like it. It is such a calling for me. Bascially I help families that are struggling for many different reasons; I help them provide for there children and keep them safe. Our goal is for the children to stay with their parents, for them to better theirselves, and the children not get removed. Working 40 plus hours is not easy as I know many of you know. Even you stay at home moms, you work more then 40 hours. I have been there and done that, and it is not a easy job. But, through it all I do like my job and I do like working. The kids are still being much cared for :)
Wesley has them most of the time and then my mom helps. Thank you Lord for my mom, she is amazing. And now the time I have with them is even more precious.
Feels good to be back to blogging. Thank you all for your continous prayers.
I also got the name of a Dr. in Austin that a sweet lady that reads my blog gave me. I am going to start researching these two Dr.'s. I know that there is no cure for Chiari and I know that just because you have surgery does not mean you are not going to still be in pain. But, I believe in my heart that there is something that can at least help him go a day without feeling sick and having unbearable headaches. I know that his body hates this shunt and trust me we hate it too. But, the Dr.'s are saying at this point he can not live without it, so we have to work with what we have.
I will keep you posted on where the research leads us. I will admit I was mad at God last night, I have since said I was sorry. I am just struggling right now with understanding why good people suffer, why kids get cancer, why some young people die so soon. I am struggling with that right now. But, God is always near me and I all I can do is keep leaning on him.
I already see two things that have came of the last 24 hours. One is; the New York Dr. needed a CT Scan and now we have one. Also, any new Dr. we see will want to see a copy. This is an answered prayer.
Two is; God keeps showing me how blessed I am to have Wesley. There have been times in the last couple months that I wanted to pack my bags and the kids bags and run. Even though none of this is Wesley's fault and he has not asked for this, it is still very hard on me. But, that is selfish of me; can you imagine how Wesley feels? I want our life to go back to how it was two years ago, before this rollercoaster ride.I want Wesley to be able to enjoy being 31, enjoying doing the things he loves to do that he no longer can. And the reality that it will never be that way, is very hard.I do not like to say never, but we know since there is no cure all we can do is work on getting him as comfortable as we can. God has once again reminded me how much I love Wesley and how I would never leave him. How blessed I am to have such an amazing husband. He is such a strong man.
So, today is a new day and we move forward.
A bit of an update on my job. For the ones that do not know I have been going through a three month training school and it has not been easy. I have done a lot of traveling and being up at 5am and not laying down until midnight. It has not been easy, but Friday I graduate. I have made it. As hard as it has been, I love my job. I have not once thought, ugh I do not like this. I really like it. It is such a calling for me. Bascially I help families that are struggling for many different reasons; I help them provide for there children and keep them safe. Our goal is for the children to stay with their parents, for them to better theirselves, and the children not get removed. Working 40 plus hours is not easy as I know many of you know. Even you stay at home moms, you work more then 40 hours. I have been there and done that, and it is not a easy job. But, through it all I do like my job and I do like working. The kids are still being much cared for :)
Wesley has them most of the time and then my mom helps. Thank you Lord for my mom, she is amazing. And now the time I have with them is even more precious.
Feels good to be back to blogging. Thank you all for your continous prayers.
Monday, June 14, 2010
Mad
This is how I feel right now. I am so angry. Can you imagine if I am so sick of this, how Wesley feels? No, because I can not even imagine how he feels. He is crying his head hurts so bad. All I can do is sit here and type my angry out while the nurses try and get it under control. I do feel angry, I would be lieing if I said I didn't. This just does not seem fair to me. What has he done to deserve this? Why is he not any better? Will have ever get better? Why can we not find a Dr. to help him? I am mad!! I know I will cool off, but I am sick of this.
Sunday, June 6, 2010
I am back..
WOW. It has been two months since I have posted. I am sorry for that. Life has been, well, CRAZY. I have missed blogging and I am back. I will try to get everyone caught up and then we will move forward :)
I started typing this a week ago and have never got to finish. So as I type this tonight, I am sitting in the ER with Wesley.
I had decided to take a break from blogging a few months ago, one because I have been so busy, but I really do miss it. I just kind of fault like all I did was complain and give bad news updates on Wesley.
Over the past few months I have changed my mind somewhat. I have gotten many complaints, that I have not been blogging :) So I am back to blogging and promise to be better about it this time.
So here is the honest truth. Life has been rough for the two months that I have not been blogging, rough. Wesley is not doing well. This disease is just horrible, horrible. Because with this disease you are just in the middle. There is not a cure and there is just not a lot that can be done. There is not a happy medium. He will go through a good time and then he will be right back bad again. Over the past few weeks things have taken a turn for the worse. He is back throwing up and having headaches that he can not handle. We have no clue what to do anymore. Today I spoke with the NY Dr. and he wants to see a CT Scan. Well luckly they are running one tonight in the ER so I can send a copy to him. He also gave us the name of a new Dr. that is closer that he wants him to try and see. He is a neurosurgeon with a lot more experience with Chiari.
I can not even explain unless you have been in our shoes on how we feel. Especially Wesley. I can not even imagine how he feels. I just feel helpless.
I will update throughout the night.
I started typing this a week ago and have never got to finish. So as I type this tonight, I am sitting in the ER with Wesley.
I had decided to take a break from blogging a few months ago, one because I have been so busy, but I really do miss it. I just kind of fault like all I did was complain and give bad news updates on Wesley.
Over the past few months I have changed my mind somewhat. I have gotten many complaints, that I have not been blogging :) So I am back to blogging and promise to be better about it this time.
So here is the honest truth. Life has been rough for the two months that I have not been blogging, rough. Wesley is not doing well. This disease is just horrible, horrible. Because with this disease you are just in the middle. There is not a cure and there is just not a lot that can be done. There is not a happy medium. He will go through a good time and then he will be right back bad again. Over the past few weeks things have taken a turn for the worse. He is back throwing up and having headaches that he can not handle. We have no clue what to do anymore. Today I spoke with the NY Dr. and he wants to see a CT Scan. Well luckly they are running one tonight in the ER so I can send a copy to him. He also gave us the name of a new Dr. that is closer that he wants him to try and see. He is a neurosurgeon with a lot more experience with Chiari.
I can not even explain unless you have been in our shoes on how we feel. Especially Wesley. I can not even imagine how he feels. I just feel helpless.
I will update throughout the night.
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