Thursday, February 28, 2008

paper work from Dr.Oro's office

Good afternoon all ,I got all my information from Dr.Oro's office yesterday and got it all filled out.We are staying at this little place called "the strawberry house"~how cute is that~ I think we did decide today we are going to fly and rent a car in Colorado.
I am soo ready to go and see what Dr.Oro has to say.- Last night was awful- trying to sleep-it just wasn't going to happen.I know I fell asleep after the weather on the news
about 9:15 and was awake about midnight.Michael is sick so he was having a rough time breathing,I wanted to roll him over because of the snoring but than I just couldn't bring myself to distrub him.I guess around 1I finally got out of bed and noticed a message on the phone,it came in at 9:39.So from around 9:30 to at least midnight I slept very soundly the rest of the night was just flat BAD!! The alarm went off at 4 and I was sad.I have been noticing that my headache is better when I lay down but the joint pain~well all over body pain~is worse when I lay down.
I am going tomorrow to pick up the films of the brain mri to take to Colorado with me.I have also fought lower back pain for over 2 years and I was able to call the pain management place I had gone to to get my records from them.They were very kind,they are going to send me my records I don't even have to go get them.I put a call into my PCP today because the heart ultrasound and monitor thing I did has been well over a week but I haven't heard any thing about the results.
Michael is goingto the Doc this afternoon.I pray he will get better soon.I am so thankful for his job.He has a great job with great people.they are so caring and can be flexible with Michael.
Sierra is doing well.Got her grades today and everything is above a C.That is awesome for my little Sierra.
She has been great through this chiari.She does what she can not to upset me or stress me out.
Joshua calls me every day to see how I am feeling.I think that's pretty cool for a 20 year old young man to call and check on his momma daily.
I hate to say I don't really know how Jayme is doing.She is my step daughter.She lived with uas for 9 years (I may of said that once before) than she decided I was evil and moved to her real mom's.I hope she is doing well.
I am so looking forward to the weekend.I am going to breakfast with a girlfriend Saturday morning.Than I hope to sleep the rest of the weekend.
Hugs to all

Wednesday, February 27, 2008

all is well

I think all is well today!!~ I can't recall the last time I said that~
That doesn't mean I am symptoms free... far from it.But.....mentally I am not feeling that brain fog! Glad about it too.
Michael on the other hand is fighting some sort of yuck.Head and chest mostly.Hopefully he will be up and running soon.I don't know what would happen if we were both down at the same time.
Scarey thought!!
The daycare babies are being great today,they are starting to understand as well as they can that Lolo doesn't feel to well alot of the time.Now instead of fighting over a toy or a book they fight over who get's to be Lolo's helper for the day.Aaahhhh isn't that cute???
So my sister(stacy)who lives in really having a hard time trying to digest me and my chiari.I mean it sounds as though she has made herself pyhsically ill over it.We lost our brother 5 years ago (he was shot 8 times by a police officer) so I think she already has me buried.She is the oldest and far away from our mom and myself so I think that is the hard part for her.
Our mom is a VERY hard person,like she would be the first to tell you she is a bitch and just don't mess with her.Her hardness has kept us from being as close as we could be but I am starting to see her really soften as of late.
I know God does things for a reason.I am thinking I am slowly starting to see some of His handy work.
Much love to you all.
Oh, by the way...I still haven't found the medicine I "misplaced"

Tuesday, February 26, 2008


I've already written once today I know however I have more to say.Really I just want to vent again.
I'm very upset this afternoon,I seemed to of misplaced some of my medicine.I don't know where it is or even why I would of moved it in the first place.It is disturbing to me because memory loss or brain fog like the rapid heart beat is becoming much more comman.I've looked every where I can think that the med's would be.I guess the major concern is that I provide childcare in my home~what if they find the med's before I do??Is it even safe for me to be watching kids??It seems so sad,it seems as though I am going down hill pretty fast.How do you get a grip on the person you are becoming as opposed to the person you were?I am not looking forward to needing to depend on people any more than I have to now.
God knows what He is doing right??

the world today

As I sit and often dwell on my chiari I forget the world around me.
I am so surprised by the number of people hurting finacially.We are in the same boat but people that I wouldn't think are hurting ARE hurting.One of my dearest friends is trying to figure out how to tell her husband they are going to lose thier house.Where do people go for help.You can't rent an apartment these days any cheaper than a house payment.
I know many of us struggling with chiari are one payment away from losing our house or our car.If you are self-employeed as I am you don't get paid for days you need to take off for Dr.'s appointment or take off just simply cause you don't physically have it in you to work that day.
I'd like to think I can save the world but right now the best I can do is pray.
I do pray that my fellow chiarians will have a pain free day.I pray that we can mentally not lose it.
Thanks for listening to me carry on.

Sunday, February 24, 2008

went to church

Just got in from church.It was so nice going and seeing my church family.I haven't been for a month so I really missed the support my women's group offers.In fact today instead of doing our Beth Moore study we just went around our group and each of us spoke our thoughts,concerns,and prayer request's.There are so many people hurting and as hard as it may be for me to believe right now alot of them are hurting worse than I.My heart goes out to you all!! You guys are the best.
I am feeling decent so far today.I have done some laundry,dusted and I am trying to get the energy up to clean the bathroom.Michael is great~He is fixin our dinner and he has cleaned the kitchen floor for me. He and my mom both are doing what they can to de-stress me.They have been wonderful!
I think the kids are good .I saw Sissy a bit yesterday and she seemed well but I haven't seen Joshua since the little E.R. visit on Friday.
I am going to work tomorrow and I must admit I am a bit nervous having all the daycare kids come.I guess It won't be a full day for me.Michael will have the kids for a bit as I go for the brain MRI and chest x-ray.I am so thankful he is able to be flexable at his job.
I hope this day finds you all pain free.

Saturday, February 23, 2008

a trip to the hospital

I got to spend several hours at the e.r. yesterday.
I like many of you have the really rapid heart beat and chest pressure.I am usually able to get things to settle down taking my xanax and resting but it wasn't changing yesterday and as the time grew closer for the day care babies to show up I became more and more upset and just knew I couldn't at that point due my job.Michael got me to the E.R. I also had very high blood pressure.But after 5 hours,chest x-ray,lab work and a cat scan all my results were text book perfect so I was sent home.The doctors and nurses were all very kind however none of them knew anything about chiari.
I have a lot of chest pressure today so I am just trying to do things very slowly.Michael and I are going over our budget looking for ways I can cut back on daycare kids because it is so hard on me.We are also talking about trying to move the daycare area upstairs and my daughter downstairs because the stairs are so hard for me especially if I am carrying a baby or 2.
I go Monday for the brain MRI.Trying to get all these test out of the way as I know Dr.Oro will want all these results when I go in April.It will be so nice to go and finally see a Doctor that undersatnds.
Hugs to all,

Thursday, February 21, 2008

nasty outside

It's nasty outside here in my part of the world.Lots of icy roads and it sounds like lots of wrecks.One of the day's I am glad I provide childcare in my home and don't have to get out in the weather.
I was able to do the heart monitor with little to no trouble.I go Monday for an MRI on the brain and than Friday is fasting lab work.I am thninking this is the end of this type of testing until I make my way to Colorado in April.
Pretty dizzy today not matter which way I turn my head.Got a pretty good headache going on and some other pains and feelings many of you can relate with.I have been spending most evenings in bed.This is one point in my life where I am thankful those that live under this roof with me have other things to do and don't mind a whole lot that mom spends alot of time in bed.I just find that I can't make plans for much of anything.For example~I asked Michael to take me to the store tonight,why?totally beyond me I know there is no way I will be able to walk through the store tonight after fighting chiari symptoms all day and dealing with 8 babies for 11 hours.Thank goodness I know my family can feel in for me.
hugs to all

Wednesday, February 20, 2008

survived the heart monitor

I think I am going to survive the next 20 minutes with this heart monitor. Is it monitor or moniter??
I had several episode's I had to write down and give sympotoms and activity levels when I felt my heart going crazy.
I am feeling very stressed and uncomfortable today.It is becoming more difficult for me to enjoy providing childcare in my home. Noise is really starting to be an issue for me as well as the pain I deal with daily.Financially we don't have a lot of options right now.
Is it ok just to have bad day's? Sierra is mad at me,I think she thought because her boyfriend didn't go to work today I should of let her stay out of school to be with him.That didn't happen.
I guess maybe I should just close right now.I am a mix of feelings and emontions and I don't want to sound like an ungreatful bitch.
Til next time

Tuesday, February 19, 2008

feeling blahhhh

I hope you all are feeling well today!!
I just got an e-mail from a lady named Nancey she is on her way to surgery with Dr.Oro as I type this.Best Wishes Nancey!!

I am going for my heart test's today.Michael will come home and watch the day care kids while I go to the Dr. then he will return to work once I get back home.I am hoping this heart moniter I have to wear doesn't "show".I don't really feel like having a long conversation with each of the daycare parents to explian what is going on.
Having a bit a pain in my arms and hands today.I also am having some dizziness going on when I turn my head side to side.I guess I'm just blahh cause I want a break.
It's the same thing day in and day out.A vacation to my room for a couple of day's would be nice.
I pray for all of you.I know you all feel my pain as well.
Don't take on any more than you are comfortable with.I will try to get over myself as I know others are struggling more than I.

Monday, February 18, 2008

appointment to Dr.Oro

Hi all,
The day has gone by pretty fast for me.That's nice for a change.
I will be traveling April 20th to see Dr.Oro on the 21st.I think we may fly.Won't take as long and won't have to put all those miles on our truck.I'm looking forward to some time off even if it has to be to see a doctor.Providing childcare is very demanding especially for some one with Chiari.I've heard many great things about Dr.Oro so I feel like I will be in good hands.I go tomorrow for an ultrsound on my heart and to get hooked up to the heart monitor I need to wear for 24 hours.I haven't heard yet when the MRI of my brain will be.
I feel decent today.I have pain and burning in my low neck and shoulder blade area.I've of course had the rapid heart beat going on.Today I felt some weird like electric sensation in one of my legs that was a new one for me.Yesterday afternoon was awful. At one point I had my laptop computer on my lap and michael looked at me and said why don't you just go lay down~I said cause I can't lift this computer off of me.Michael did it for me as well as fixed dinner and served me in bed.He is pretty great.I couldn't imagine going through this stage in my life with any one else.
Til next time,

Saturday, February 16, 2008

Hi all,
I know it's early but who sleeps these day's.I hope today finds you all doing well. I pray some of you may still be sleeping.
After all the fun I had at my regular Dr. yesterday,last night I got a phone call and e-mal from Stacey at dr.Oro;s office in Colorado and he wants to see me. Brought me to tears because he is one of the best Chiari Dr. and wants to see me.I guess it sank in that I am a bit sick but not willing to give up the fight in any way.
Things on the home front are well.
Sierra got a ring from Chuckie for Valentines day. Very nice.I'm happy that she is so happy.
I haven't heard to much this week from my son(Josh~he is 20).I hope that means all is well.He's a good kid.
Michael's daughter Jayme is living with her real mom as of late.She was with us for 9 years but decided she was no longer happy here.I think she is adjusting well.I pray she keeps up with her schooling.I pray to for Michael as he has alot on his plate right now.Me,Jayme, and he has his own illness.He is a diabetic.We gotta hang in there and take care of each other.
I have many things to do today so we are hoping the pain stay's at bay for a while.
Take care,

Friday, February 15, 2008

got the xanax among other things

well the doctor's visit was interesting to say the least.I just wanted a prescription refill but got alot more.He is not happy with my rapid heart beat,chest pressure and shortness of breath so we did an EKG.He is sending me for a stress test, he wants fasting lab work done,he wants me to wear a heart monitor for 24 hours and a few other things.He just being a regular dr and not being a neurosurgeon thinks the decopression surgey is needed.
I am just trying to adjust to all of this~after all I only just found out about the chiari.
Feeling stressed of course now.Michael wants to go out tonight but I just want to go to bed.I feel really bad for him becuase that is where I seem to spend most of my time lately.He is the one watching the daycare kids right now.I love him for all he does but know this is taking a toll on him too.How do other husband's out there help you guys?I have read that the stress related to an ilness like this is one reason couples divorce!!
every one try to have a great weekend,

going to the Dr.

Going to my PCP today to see if he will renew my prescription for Xanax. I get that really rapid heart beat and shortness of breath and the xanax seems to help but this Dr.doesn't like me being on it so we'll see what happens.My husband is off today so he is being VERY helpful.I am VERY thankful.I just kinda feel all outtta sorts today.The rapid heart beat is going on,I feel shakey all over and my monthly friend thought it would be nice to pay me a visit so I've got some good lower pain going on.Trying not to take anything for the pain cause Michael would like to go out and do something tonight so I don't want to be loaded with pain med's and than drink alcohol.
I hope every one is feeling well and pain free today.
Til next time,

this is me~laura~better known as LOLO

Some where in Kansas~ before Chiari changed my life!!!

sweet 16

This is my daughter Sierra. We call her Sissy. She is my pride and joy.
She is now almost 17,going to school and working parttime.She has a great boyfriend of almost 2 years.His name is Chuckie.She is a great help around the house on my bad day's.

Michael~my husband

This is earlier this year in Omaha on an Indain Reservation making crafts with some kids.
Michael has been great through this Chiari jourmey we our on.

Thursday, February 14, 2008

what a day

what a day it has been so far and I think it is only 9:30 in the morning.I've been so busy I don't know if I am coming or going.In a way it can be a good thing to take your mind off of your pain on the other hand once you do sit down to take a break you will really feel the pain. I hope every one is having the happiest of Valentines day's. I have chiari malformation with a 5mm herniation but my MRI also says I have straightening of the cervical spine~what is this?

Wednesday, February 13, 2008

Valentine's day

I have to say a speacial thank you to my husband Michael-- The flowers are BEAUTIFUL!
I got some flower's and candy 1 day early.
To all of you out there suffering from Chiari I say --- eat chocolate!!!
I think I will use this blog as theraphy. Just dealing with Chiari daily is so draining. Since I'm fairly new to all of this I'd love to hear from you.
God bless you,

My first blog

I'm 38 and just happened upon this blog thing. Very cool.
My name is Laura,however I provide childcare in my home and the darling little kids all call me Lolo.
My journey with Chiari started a few months ago with an awful lot of pain in my neck,shoulders and arms.On Thanksgiving last year I was trying to make muffins and fill the muffin cups when my right hand just kinda decided it didn't want to work. Telling my mom about it of course she wanted me to see a doctor right away but she thought maybe I was dealing with accluded arteries.My PCP hada x-ray of my neck done nd said it showed nothing let's try and MRI.By this time the pain was more common and more intense. I started also feeling burning sensations in my shoulders and upper back.The MRI comes back and according to my PCP said "nothing " so they sent me to a pain management Dr.After I picked up my MRI and report to take to the next Dr. I read my report which very clearing said Chiari Malformation 5 mm herination.The pain Dr. could do nothing for me so she sent me to a Neurologist to have a nerve test done called an EGM.She did the test said things basically looked normal except for "something" in my left bicep. She did look at my MRI and showed me on the film the descending cerrebellum but sent me on my way.Since than and this was just the first part of Jan. I have had headache,neck ache,chest pressure,rapid heart beat,shortness of breath,mild balance issues.memory issues,fatigue,no sleep,vision issues,leg weakness,pain in arms and tingling in hands.The list goes on.I sent my MRI and other test results of to Dr.Oro in Colorado hopefull he can lead me in the right direction.
Life has certainly changed for me.Not nearly as active or cheerful as I used to be.Thank God for my husband.I don't know where I would be with out him and lots of pain medication.
Til next time,