Monday, March 31, 2008

still raining

It is still raining here.I don't think we should expect to float away any time soon though.
Just ejoying my quite time before all the little darlings show up today.
The weekend did improve things.Michael and I talked Friday night and realized~I felt like crap and we were just basically misunderstanding each other.Saturday we found an apartment!!! Not only that but the leasing agent would like me to tend to her child once we move.Yes,the idea was to cut down on babies~so we'll see.I have 10 kids including the 2 boys that get on and off the bus here at my house than wait for mom so I really will be cutting down cuz I am only taking 5 babies with me and than possibly the leasing agents child.The apartment is what they call a 2 bedroom split-for roommates with the bedrooms at oppisite ends of the apartment,2 full bathroom,great closets,washer and dryer IN the apartment,no steps for me in the apartment or from the parking lot to the apartment-YEA- fireplace and a great deck space.We are hoping our deck veiw is going to be over looking one of the 3 swimming pools.We look to move the first of June.I wanted Sierra and the other kids to get out of school.Plus...I want that money from Bush.Anyway we are very happy and looking forward to move from this house that just doesn't really work for me.We had fun going through the house and deciding what we were taking and what would be garage sale stuff."one mans's trash is another man's treasure"so they say.We went to Walmart and Target and looked around at things for the bathrooms (shower curtains and such)until balance became an issue for me and I ended up in or on the shelf with the pyrex dishes. We tryed to continue on until I lost balance a couple more times so we thought it best to leave.
I go to my regular doctor this week to check on how my med's are working.I am taking the vicodin,xanax and skelaxtin but we are also trying the last couple of weeks the cymbalta.I think the cymbalta has helped with the anxiety which is why he said he was giving it to me but it doesn't do anything for pain.I leave in less than a month for Colorado and we are getting ready for that.As much as I feel so overcome with pain daily and fatigue and now a flippin yeast infection(hey,I don't mind sharing)I am happy to have something else to focus my time and attention on with finding just the right apartment...
Enjoy your day every one. A special HI out to Lacie and Dee.Have a great day ladies.

Friday, March 28, 2008

It's gonna rain

How is every one?I haven't had much to say the last couple of days.I'm not sure I have anything worth sharing today either just didn't want any one to think I was dead since I am usually on each day.
I am soo thankful it is Friday.It has been a rough week.I have been very fatigued - so much so that I think I may be taking some of the things my husband has said and done this week out of context and bascially told him today~I needed my space~so he left and I have no idea where he is.I think we may all have those day's (or weeks) where it isn't going to matter what someone says or does it just isn't going to be right no matter what.
I didn't have the rapid heart beat or trouble breathing for about a week so it was really upsetting when those symptoms came back like a roaring loin this week.
I am feeling sooo burnt out on childcare~you could set a clock by us.Same thing nearly every day.I know the little ones don't know my pain so I am trying to be the same ole' Lolo and put on the fake happy face when mom and dad come to get them.
We are expecting rain this weekend so I think I am going to plan to stay in my room as much as I can and hopefully be better for Monday.
Have a great weekend,

Tuesday, March 25, 2008

conquer chiari

So I shared with you that I thought Rick's -conquer chiari-book is awesome.I have given the book to a family member to read.I think WE try to explain to people what we are going through and how we feel but they may not really "get it"til they can get their hands on something like this book.My mother-in-law even after I shared with her my daily symptoms and struggle's was shocked to say the least when she started reading the book.She marked pages and called me with the questions she had.I think so many people think-have the brain surgery and you will be fine-that may be the furthest thing from the truth in our cases.Knowledge is power here.
I pray that people would also try to keep in mind that no 2 days are the same for us.We don't even know what our day will be til we live it.
I am looking for ways to help our loved ones REALLY understand our situation.We need their support on a daily basis so they should be aware of what they are getting into.
I must say Michael and my daughter have been awesome in being there for me no matter what I may need.I am soo thankful for them.I don't think though that anything can replace a fellow chiarian and the support we get from each other.

Sunday, March 23, 2008

happy easter

I did survive the heart test on Friday.I was there 4 hours.When they injected the 6 minutes of medication I thought I was going to die but I quickly recovered once they stopped the medicine.Michael and I spent the rest of our day off shopping.It was very nice.
Saturday was nice and low key,we did the grocery store thing.Had breakfast with some church friends and spent the rest of the day recovering.
Our Easter day has been nice.Had a lot of leg pain and weakness this morning so wasn't really sure how church was going to be but it was ~beautiful~. After church we picked up Jayme(my step daughter) whom I haven't seen or talked to in almost 2 months and we went and did the Easter dinner thing at Grandma's.It was very nice seeing my family.A couple of my cousins are getting married so there was alot to catch up on.Of course they wanted to know about me and my chiari.Thank God my mom took over and filled everyone in for me because it really became a little to much.As we were trying to leave I had major sensory overload and almost like a black out spell.I couldn't find my way for a couple of seconds,ya know-I'm sure you have all been there.I knew it was really time to go and I needed to rest and I have been trying but my body just won't stop so here I am.
Tomorrow will be back to a full load of daycare babies.Last week was nice with spring break and my being of last Friday so I hope at some point tonight I will sleep and be ready for those little darlings.
I hope you all had a great day.I am praying for a great Monday!!

Thursday, March 20, 2008

Rick's new book

If you haven't read Rick's new book~ you must~.I got my book in the mail yesterday about 4 central time and as of 1 central time (less than 24 hours ) I am done with it.It is WONDERFUL and I can't wait for my family to read it.I know that many of you have been dealing with your chiari or tethered cord or what have you longer than I have....Where are you with your new life? I mean are you angry,or over being angry and you have accepted this new phase in your life,are you sad that life has changed so much,have you overcome and now you can help others? I have NO IDEA where I am~ I think I may still feel completely numb.
I wanted to think I was over the anger but than I read the book and I'm not clear on that.Did I ever get angry ....Have I broke down and cryed yet....I honestly don't know where I am in this journey and for some reason that bothers me.I think because I wanted to push it all under the rug.I was the one that did everything at home and at church, I was in control.I have had to let go of all my church activities,I have cut down in my job and am even looking to move to a MUCH smaller space.I thought I was ok with all of this now I question that. I want to be at the point where I can say "this chiari is not going to control me I am going to control the chiari". I'm not thinkin I'm close to that yet.I guess I am at the -poor me-stage.This morning I was thinkin after the last baby left I was going to go get my nails done after all St.Paddy's day is over so the green's gotta go.This afternoon there isn't a chance I feel like getting out of the house to sit in a nail salon for 2 hours no matter how bad I need it.
I am off tomorrow so that is good.I have that heart test where they inject medicine and than-------------------I don't know what they do but they said I should expect to be with them most of the morning.If that isn't bad enough I can't have pop,tea,coffee or chocolate.
I'll let ya know if I survive this.

Wednesday, March 19, 2008


I've had a few symptoms the last couple of weeks that kinda have me thinkin' I'm crazy!
I have this pain or constant cramp in my right calf it has been there for a bit over a week.Than I noticed a couple of day's ago my right foot was tingling half on top of my foot half on the sole of my foot as the day went on it was almost as though my foot was beating in rhythm with my heart.I haven't felt it today,just the leg pain and leg weakness which I have had for a while.The leg weakness is one of the reasons we have been looking to move to something with just one level.It is hard to go up the stairs.I have had lower back pain for over 2 years.It began with a miscarriage.I had an MRI done and was told I have a herniated disk and degenerative disk disease but now with all this chiari stuff I really don't know.My prayer is that Dr.Oro will be able to help.
Nothing else going on in my world today~The sun is out ~that is a big praise!
Michael gets a pretty nice bonus at work so that is also a big praise!
I missed watching Big Brother last night so I have to try to stay awake to watch it tonight.I watch so little tv it sucks when I miss something that I do like to watch.However I will take sleep whenever I can get it.
Stay out of trouble!!

Tuesday, March 18, 2008

Happy Anniversary

Michael and I have been married for 9 years today. I have to admit that we were talking about it last night and than this morning neither one of us remembered until Michael was leaving for work and something kept telling me there is something going on today~Oh duhhhh! I can blame my whole memory thing on Chiari- what shall Michael's excuse be??
Ya all know I am still pretty new to this whole chiari thing right?? I am so amazed at how one day you feel pain but you do alright and then the next day the chiari symptoms kick your butt.I am soo glad Michael doesn't mind that we wait til the weekend to do anything for our anniversary. I have lots of neck pain as well as pain right between the shoulder blades.Weakness in my legs and trouble with my breathing.Should I generally just expect things to be this way?My heart is going to town as well. It seems like the closer it gets to go see Dr.Oro the slower the time goes.
We looked at the apartment last night and found that we could make it meet our needs. One level,no stairs,no yard work,no shoveling,no hardwood floors.Sounds good,however I still don't think we have made a clear cut decision.I don't think we will until after we talk to Dr.Oro. It could be very interseting trying to move a 4 bedroom 2 full bath house to a 2 bedroom apartment.I will have one heck of a garage sale.I have been trying to "pay attention" to God through this chiari journey and I have felt for some time I am hearing him say to me-downsize-simplify-slow down.Maybe this is where this much smaller apartment comes in.I certainly do not mind ~letting go~ off things and downsizing.I am looking forward to it.Infact yesterday I cleaned out my side of the closet and ended up with 2 bags full of stuff.I just feel like I could go through this house like a tornado and get rid of so much stuff.
I've got the "shakes" so i'll shut up for now.
God bless you!

Monday, March 17, 2008

Happy wet St. Patrick's day

I don't know about where you are but it is very wet where I am.
I don't know how the parade has turned out.Hopefully you either don't mind the rain or you could be to drunk to care!
So,speaking of drinking Michael and I went out for a couple of drinks Saturday.We played darts,had a couple of drinks and an early dinner.It was nice ~just not something I would want to do to often.I still hurt (in my arm) from throwing darts.I knew I would.I guess I was willing to pay the price just to get out of the house for a bit.
We are going to look at an apartment tonight.Don't know how soon we'd move if we think it will fit our needs we just know this house is to much for where we are in our lives right now.To much to clean,to much yard work and physically going up and down the stairs is to hard on me.I would be able to take some kids with me so I would continue to provide childcare just in a much smaller space that is all one level.With the breathing issues and leg weakness the apartment sounds like a dream.
Have a great GREEN day.

Friday, March 14, 2008

pretty good day

It has been a pretty good day.I feel like I've gotten alot done.The only problem is....I will feel every bit of it tomorrow.
We are supposed to be expecting rain and snow so that should be fun for all the parade goers tomorrow.I was thinking of going to meet a fellow chiarian for coffee.She actually has SM.
I am hopin to feel well enough tomorrow night to go to a cancer benifit for a little girl.I don't know the little girl personally but my best friend all through school is going to have her head shaved to help raise money.So that is something I'd really like to see.Heck if I knew Iwas having surgery any time soon I'd shave mine too.
No calls or e-mails from Oprah or Montel.I'll give 'em til after the weekend than try again.
My sister is a big Ellen fan so she thought she would try to reach her people.
Well my husband whom I don't think I've seen all week is home so I will close for now.
Hoping for pain free day's for you all.

Thursday, March 13, 2008

I e-mailed Montel

Yep,I e-mailed Montel Williams and Oprah.Yesterday I was pissy about CM/SM not being better known by the medical proffessionals and any one else for that matter.I spoke to 2 people yesterday that brought up Montel's name because he suffers with MS so I thought what the heck,the worst they can do is just not responde to me at all.Which is probably what will least I tryed.I don't give up real easy either.
One of the kids I gave notice to is going to be leaving today.I hate to sound cold hearted but I am thankful that the time is here.The second little girl I gave notice to,I have had for 5 years and she and her whinning and hitting and fits have just gotten worse almost weekly sometimes I think.I almost wish she would go now as well.I am trying so hard to "deal "with her as she is only here half a day at this point because she is going to a headstart preschool program.But ya know things are rough if you've been in this business as long as I have and have trouble dealing with a child for even half a day.
We have St.Patricks day coming up soon. This Saturday is "Snake Saturday"parade in North Kansas City.It's a really big deal for people who are Irish and people who aren't.Another excuse to drink maybe.I think Michael will be driving the float the church has made.Sierra will be in the parade with her tow truck friends and I'm sure Josh will be there floating...around somewhere.Do any of you have any plans?
The day after on the 18th is my 9 year wedding anniversary.whoooo!!!We haven't made many or really any plans since the following month we will be taking a road trip to see see if he wants to play with my brain.
Until tomorrow~have a great day.

Wednesday, March 12, 2008


Anything happening any where today?
I'm feeling pretty blahhh today.I'm assuming it has to do with the monthly friend thing.
I'm pretty bummed out that with as much time as I spend on the computer looking for and about chiari information and other peoples blogs there just isn't much out there.I want to take in everything I can.I want to be able to educate my family and friends so they can help me and others.I want more doctors to know and be aware of chiari.It pisses me off.I don't get off on complaining about my symptoms every day so it helps me personally cope to read other people's stories.I have to say some of the blogs out there don't make alot of sence.Maybe mine doesn't either.I just wish more were being done.I am only one person but I intend to make a difference somehow.

Tuesday, March 11, 2008

I am freezing!!!

Man,I am very cold today.Well should I say at this time I am very cold in a couple of minutes I'm sure I will be hotter than hell!! It goes back and forth daily like that.
I am having my trouble breathing today so that means I've had to use my inhalers which means I got the shakes.So what's more important~breathing or shaking~somehow today I thought I'd like to breath.Taking care of 8 kids I'm sure they'd like Lolo to be breathing as well.
So,today I am sending off a request to ford motor credit to please look into rewritting our truck loan to see if we can lower the payments.That would take some pressure off of us.Than hopefully we can look into moving into an apartment.I need something one level. We also have alot of land to mow here and we or rather I am not all about wanting to shovel the drive way or sidewalks when the weather is bad.There are some apartments across the highway that we really like.Still in this same area so I can still keep a couple of kids and still enough room for Michael,Sierra and I.I have no desire to own a home and with this condition I don't know how smart it would be any way.
Today is my nephew's 20th birthday~HAPPY BIRTHDAY CHRISTOPHER~
Chris and my son Josh are just 2 months apart.We live so far apart though.Thank goodness for e-mail and instant message so my sister and I can visit almost every day.
The little girl I gave 2 weeks notice last week is actually going to go ahead and have this Thursday be her last day.I am very relieved.She is a wonderful child just more than I can deal with at this point.
As suttle as some of the things are I can see God working in ours lives even as we feel like we struggle each day.I am so thankful Michael and his mom are speaking again.I'm thankful that even though I haven't spoken to him again I did call and clear the air with my dad.I have made so many friends on some of the message boards that know just what I am saying each day.Money has come when we have needed it and in some cases still don't know just where it came from.The love and support has been endless.Sometimes I guess it does take something BIG to wake some of us up.
I pray you al are pain free today,

Monday, March 10, 2008

so far so good

I guess you may of gathered from yesterday's post I cleaned the bathroom.That's a big deal for me these days.
Not doing to bad so far this day.I have not used my inhaler so I am not doing all that shakin and seem to be breathing ok with out it so far.Been working on some laundry and reading up on all the posts on the message boards.
I think I did a good thing today~a couple of years ago there was a big falling out with Michael's mother and myself so things have been rough for Michael,he got to the point where he just stopped trying to talk to his mom.Well since finding out about my chiari I have been pretty big on not wanting to live with any regerts so~ I called her today.We talked just a short time but enough to say what's in the past is in the past and we still love each other blah blah blah.She is/was interested in my condition and welcomed any future contact with Michael or myself.I'm glad for Michael.I want him to have that relationship with his mom and I hope by my calling her and being able to make peace that it will take some pressure off him.
I got a letter today that my insurance company denied the request for the C.T. lung scan so I don't really know where that puts us now.I still need to call and reschedule the 2nd heart stress test and get some prescriptions refilled.
All in all for a Monday things are fairly decent.I pray you all are finding your day decent as well.

Sunday, March 9, 2008

cleaned the bathroom

I hope everyone has had a good weekend.Mine was "lite" I didn't go for that heart test Friday so we will need to rescedule that.I also have a C.T.scan of my lungs coming up.I found out today that the reason for the "shakey"feelings is due to the inhalers.I don't know why, but I feel better knowing the source.I shake so much I'd like to stop the inhalers but it takes everything I have just to breath so not using the inhalers may not be the best idea.
I got out last night and went to a surprise birthday party for the youth pastor of our church.He is 40.Didn't stay out to long cause I just can't handle much but it was nice.Church this morning was great.I love our church family they are the best. Michael is going to be very busy this week with his job and some church things.We have a snake Saturday parade here for St.Patty's day so the church is working on a float which will take up his evenings so I think I will be resting alot these next few evenings.It's about all I do any way.

Friday, March 7, 2008

didn't go to the Dr.

We are having some snow out there today.We never know what to expect weather wise anymore so we just take what we get.
So I didn't have coffee,pop,tea or chocolate all day yesterday only to wake up not feeling so great this monring to go to the doctor for that heart test.I'm REALLY shakey~I have been since Monday when I had to fight so hard to breath.The inhalers have really helped with the breathing but I am no where near being back to 100%.I also have balance issues this morning so I thought it best to just stay in.I am a bit concerned about the "shakey" feelings.It seems like it takes both hands to hold onto a cup or whatever.I have also been feeling like my whole body is vibrating when I lay down.I know I've read of others feeling this on some of the message boards.I don't really know what it has to do with.Just my life now! I don't know about the rest of you but I am soooo thankful that it is Friday.I am so happy to know I can go to bed tonight and the alarm is NOT going to go off at 4 a.m.Not much going on for the weekend.
I hope you all enjoy your weekend,get some rest and hopefully find something to laugh about!

Thursday, March 6, 2008

no caffeine

So I go for this heart test tomorrow and I had to stop drinking caffeine even decaf and no chocolate! I probably don't need to tell you how my day has been after hearing that huh?
It really hasn't been tht bad.Not something I would do every day but I am surviving.
I haven't had a full crew of kids all week.What ever this crap is that is going around is really kickin people's butt.Michael is just now starting to feel better and he has been on 2 rounds of antibiotics.I hope ya all start feeling better.
I can't think of much to tell so hang tight and I hope you are having a pain free day.

Wednesday, March 5, 2008

I remember now~it's called SLEEP!

I wouldn't believe it if I hadn't done it myself~~I got some sleep last night~It was so wonderful I almost can't wait to try it again tonight.
After all the breathing trouble I have been having I will admit I was nervous about going to bed last night.Michael was wonderful as always and we talked and giggled and than we SLEPT!
It was really nice.
How is everyone today?Mentally I am really good.Of course I have neck and other pain but it hasn't brought me down today.I have the shakes though and I have no idea what this is about - like I'm coming off drugs or something.Something new happens each day!
The daycare babies have been good to me today.Not causing to much craziness.I have been good to them too.Ya know,we have a love hate relationship sometimes.It always comes back to the love though.
Josh got yet another new job today.I'll let ya know how long this one lasts.He finds good one's but for some reason his mouth maybe -he doesn't stay with them long.
Sierra is shopping so ya know she is happy.Grandma (x mother-in-law)took her shopping after school today than she will be headed off to work.
Sometimes we get so down on our illness,we think we can't see the light at the end of the tunnel.I know I've been there often but I must say I am so blessed with such great helpful caring kids.I have been trying to make a real effort to let them know how great I think they are.Michael is always great too.If I could be half the person he is~I have been truly blessed with him.-
Hangin there ya all-we'll make it.

Tuesday, March 4, 2008


These last fews day's have by far been the worst since I found out I have chiari.Not only do you have the chiari and all the fun it brings daily but this head cold has been AWFUL!!I went to my regular doc ysterday who gave me some meds.He did another EKG and set me up for yet another heart stress test.He is not convinced the rapid heart beat has anything to do with the chiari.He had me do some breathing things and sent me with an inhaler.It took all I had yesterday to breath.I've never been through anything like that and hope I don't again.I am still having trouble breathing today but not nearly as bad.
I have decided that I need to let a couple of the daycare babies go.It was hard to admit I need to do this but I do and I feel better.
God knows what He is doing even if I still don't

Saturday, March 1, 2008

haven't gotten out of bed all day

I certainly hope the rest of you feel better than I do cause I feel awful!!! I have a REALLY bad sore throat.I just don't know any more what symptoms are chiari and what is not.I have been checkin my throat for puss pockets~I suppose if they show up I'll go to the doctor. So I had to cancel my breakfast outing with my girlfriend but Michael brought me breakfast in bed this is where I have been all day.
I did hear from the doctor yesterday that the results of the echo stress test and the heart monitor were normal and what I am feeling is chiari symptoms.
I spoke to my dad today!I can't recall the last time I have spoken to my dad so this was a big deal.We've never had a great relationship,I've never been daddy's little girl per say.He likes to hold grudges -I say forgive and forget and move on. Any way I thought he should know what is going on in my life(selfish or not) with the chiari.He was very interested in my illness.He drives a truck over the road and wanted to make sure I had his cell # and wanted Michael or I to keep him updated on how I am feeling and what happens after doctor Oro's visit.I was real surprised by how kind and gentle he was.I told him anything was possible with this chiari and I just wanted him to know that he is my dad and I loved him and hoped that he'd forgive me for what ever he is or was upset about in the past.
I hope you all are enjoying your weekend.I am going to go back to resting.
Hugs until next time