lolo's chiari blog

Wow! it's been a while

2009-07-20T15:39:00.000-07:00

Hi all,
I sooo miss my Chiari friends.

So, Living in a small apartment as Resident Managers with Hillcrest Ministries is great! We have the space for about 20 families. Rehabbing has gone slow but we finally have several units ready to go. Michael and I love being here and just know the way it all panned out was a total God thing.

My mom ~ WOW what a different relationship we have with her being terminally ill. Not that things have changed alot on my part~that nasty,negitive,ole bithcy woman is gone and now I have this much gentler woman as my mom and our time is limited.She has gone through 3 rounds of chemo and we have now found out that she has blocked arteries. Of course she has lost all of her hair, She is very cute and since April she has lost over 70 pounds. She is living with my grandparents. I am so thankful they have the space and still in their 80's the ability to care for her. We talk every day and I am over there doing what I can at least twice a week. We still are not clear on how much time we have but I have let go of all the crap and am just enjoying her now. On her really bad days I must admit I do pray God will take her so she doesn't have to suffer. One of the big things causing both she and I stress right now is my sister. Stacy has become very manic.She says we all want her (my sister) dead and that I say she is the reason my mom and I are sick.She lives so far away that she is not here for the day to day things with my mom or myself so I feel that some of what Stacy is feeling is guilt. Stacy left a message with Michael and my daughter last Friday that she was going into the hospital for a couple of weeks. I spent most of my morning calling hospitals and the only numbers I have looking for her and I came up with nothing. If you are reading this and pray I would ask that you please lift Stacy and her family up.

I have applied for SSD. This past weekend I did the mental evaluation and physical exam. Of course I expect to be denied at least my first time.
One of my biggest issues right now is my blood pressure. We have had a hard time getting it under control since May. The highest was just the other day at 154/104. My Fibromyalgia is just out of control. I was supposed to see Dr.Oro the 28th of May for my TC surgery but my family doctor would not release me for that surgery due to the blood pressure. The issues are endless it seems but I just lay in bed instead of shaking my fist at our Lord. After all I am not dying as is my mom so I just try to cope. Michael and my kids are very good to me and are very understanding of my daily pain and the fact that I can make plans to do anything.

I hope you all are well. It's raining here so if it is in you r area too~try to stay dry.
Blessings,
Lolo

Sorry it has been so long

2009-04-26T11:26:00.000-07:00

Well alot has happened since my last post.
We as of today are finally settled in to our new apartment. We did get the Hillcrest resident manager position. Alot of work still needs to be done here before we will have residents but it will all come together.
The day after we found out we did infact get this position my mom took herself to the hospital and very long story short~she has lung cancer. The tumor is the size of 3 softballs and grows daily. This small cell cancer is very aggresive and rare but her smoking has not helped anything. We hope to have until Christmas with her but it looks less likely with each passing day. Chemo will only by her a little time. Just this weekend we moved her in with my grandparents because she can no longer work and needs care.
I leave in 4 weeks~I think~ for my TC surgery and I hope and pray nothing happens to mom while I am gone.
It's time to forgive! I don't want her to go and we have any unresolved issues.
I think we have done well. Trying to work fulltime, be here on the Hillcrest property,Take care of my mom and myself was becoming very stressful and I know it will be stressful for my 80 year old grandparents but I think through all of us we will get it done.
I am so thankful for the support I have from our church family.
Just wanted to give a bit of an update.
I will try to stay in better touch.
With love,
Lolo

Just waiting

2009-03-21T10:32:00.000-07:00

Our interview with the director with Hillcrest ministries went very well Wednesday night so now we are just waiting ti hear if we get the position as Resident Managers.
He said we would hear something the first of the week.
Why is waiting so hard???
It's almost as though we are depressed waiting to hear something~anything. I know I know~All in God's timing. I'm trying!!!
My toes are still turning blue. Now we have some painful tingling and it seems to be happening more often. Dr. Oro says to watch the way I sit. I guess I will have too cause i can't get there for surgery any sooner than May.
Love ya all,
Lolo

Did I tell you about my blue toes

2009-03-17T12:16:00.000-07:00

I guess it has been a few days since I've posted. Well I have a few things to share.
I noticed a little over a week ago that my toes were turning blue. Between Michael ,mom and myself we kept an eye on them and decided that it was happening whenever I bent my knees like to cross my legs or sit indian style.Michael being a diabetic couldn't take it any more and took me to the Dr. They said I am not getting enough oxygen to my feet and that the blood is going down but not coming back up. Ok fine~ what do I do?? The doctor said it will probably continue to happen until I have my TC surgery and really didn't seem to concerned. Dr.Oro has been out of town so I haven't heard from him so I guess I'll just have blue toes and not worry.
Ok~another totally awsome thing is going on.
Our church sponsors a transitional (sp) housing program called HillCrest Ministries. The program just bought 1 city block in Kansas city Kansas (about 10 minutes from where we live now)There are 2 houses,2 duplexes and 4 ~4 plexes. The program is just starting in this new area and they need a resident manager team (michael and I). I am in a Sunday morning small group with Paul who happens to be on the board of this program and asked if we would be interested in the position. Can any one say YES!!!!! Anyway we went and saw the area and where we would live~in the duplex~2bedroom 1 bath kitchen all that stuff for $100 a month.
We spoke to our pastor and he already knew. Paul had spoken to him. We spoke to the associate pastor who guess what~ is on the board with HillCrest also. Any way we have to meet tomorrow night with the director and if it is a fit we move in ASAP.
This is soooo cool on so many levels.
We would be able to get back into missions ministry which we haven't been able to do since I got sick
We would be serving the Lord.
We would so be able to get out of debt with only $100 rent payment
We would be able to get out of my moms
We would be helping others and making new friends
I could go on an on but I will stop there.
We meet with ~Shawn~tomorrow night at 5:30. Tomorrow is also our 10 year wedding anniversary.
Is this a God thing or what.

Oh Monday Monday

2009-03-09T08:21:00.000-07:00

Wow,I have to say I am surprised by how bad I feel today. My face,head,neck,shoulders and low back are clearly not happy today. I've taken the Flexiril and Vicodin and have yet to see much improvement so this post may be short.
We looked at a studio apartment and asked about a little loft in our area and found out that we or even just Michael make to much for us to live at these 2 places. Maybe we are where we are supposed to be for the time being. We have decided that we can't change my mom so we must change our attitudes to keep going. It wasn't bad this weekend. We all 3 actually had dinner together last night.
The smoke is still a super big issue. It is hard to stop smoking when you live with a smoker!!
But I won't be a victim of my circumstance!!
Keep on keeping on ya all,
Lolo

I've failed

2009-03-05T11:49:00.000-08:00

I've failed at not smoking.
As little as I smoke~this is very hard. It couldn't be due to any stress issues I have. Ha!!
I went to see Sandra ~the therapist~yesterday.Just right off the top I knew she wasn't for me so I won't be going back but she like my family doctor and the Pastor told me I need to move. I have only been here 1 week people and I'm a nut!!! She did talk to me a little about the brain and stress and I have enough brain issues that I am really not doing myself any good. She said if she could prescribe me xanax she would.
Any way she was nice enough and I was glad to of gone but I need something more Christian based.
I don't know where you live but here in Missouri it is sooo nice. It is about 72 and just a little breezey.I got out and got a hair cut and did a little shopping for little Sydney for her first Easter (Sydney is the baby I nanny for). A little shopping therapy always helps in making one feel better.
We are going to go tomorrow and look at a studio apartment. Michael would like for us to be able to make it here at moms until July when I go back to work after TC surgery but that is reall really far away. Can I just say we made a HUGE mistake in even thinking it could work here.I had no idea it was going to be so hard. I had no idea I had issues with my mom. Talking to someone on the phone is much different than living with them.
On another note~ my dad is finally starting to recover nicely from his surgery. He developed an infection a couple of days after he got home so they opened him back up and packed him with gauze that needs to be changed nightly. I was able to tell dad that I was sorry for our past relationship and that I am so thankful I am getting to know him. He is a great guy but thanks to my mom I never got to know this. Not only is my dad pretty great but I even like my step-mom.They have been married for 17 years.
Joshua as of yesterday is revoked.Because this is his second DWI in less than 5 years he is not supposed to drive for 1 year. He hasn't said much of anything about how it's going being back at his dads. I told him when he was ready to come back to grandma's let me know.
Sierra is doing well. This semster is a hard one for her but she is doing what she needs to to graduate at semster next year.
My neck and feet are very unhappy today so I think I will close and take it easy.
If you are a prayer please lift up Michael. He is fasting. We really just want to feel and know for sure where it is that the Lord is wanting us. This is really big for Michael. He is a diabetic so he rarely fasts but he too is really hurting and uncertain of what's to come.
JOY,
Lolo

doing better

2009-03-04T06:37:00.000-08:00

I'm doing better today.
I smoked my last cigarette last night. As little as I smoked this is still going to be hard.
I also fasted one meal last night. Starting with one meal is a start. I had water and I prayed ALOT.
I was able to go visit with the Pastor of our church yesterday. It was wonderful.We talked about my depression and why now is it really getting me. We talked about my physical every day pain,we talked about that I need to grieve my old self-who I was before chiari-and that that is ok to do but mostly our conversation had to do with my mom and the control and fear.
I didn't realize my mom still had that much power and control in my life and I am afraid of her out brust so instead of putting her in a situation where she would have to figure things out on her own Michael and I moved in and saved her. When I think about it it really pisses me off. I am almost 40 still struggling with mom issues and she is almost 60 and never had to be responsible for her life. My Pastor-Tiger- had me to read John 5. Just the first part. That little old man sounds like my mom. He also said if I am having conversation with my mom and she is upsetting me to pray in the moment in my head not only for myself and her words but clearly for mom too. We talked about how I in my time need to forgive mom (you may ask for what but we don't have the time or space to go there) and I need to take the power back. We talked just a little bit that Michael and I need to have a plan for our leaving here when we are able.
I am still going to see a therapist today. I found her through our insurance and I am looking forward to it.There is something so freeing about talking,finding the problem and getting it off your chest.
I am also reading~ Lord,I want to be whole~by Stormie Omartian. If you have never read any of her work~ I highly suggest you do.
I got notice from our insurance yesterday~ I think ~that they approved the 2 MRI's Dr.Oro wants me to have in May. I still have a couple of months but I am happy that the insurance and Dr.Oro's staff are clearly doing their jobs and it does start to make surgery #2 very real.
Love you all.Thank you for your support,
Lolo

Enough with the pity party

2009-03-02T13:43:00.000-08:00

Ok so today I am sick. Head cold. Nothing the doctor can give so it has to runs it course.
I talked with my doctor today about a therapist. He said he has me on the highest dose of Cymbalta he can give me and thinks looking into counseling is a good thing. He said I need to stop smoking so I am going too (not that I needed a doctor to tell me that). He said with the amount my mom smokes in the home that it is unhealthy for me so we increased the number of times I will use my asthma inhaler a day and he gave me another prescription for the vicodin but was not real happy about it because you are not to be on it long term.
After the doctor I went to the Lifeway christian book store. I could of stayed in there for days.I came out with a couple of books and have already started reading one.
Michael went to church yesterday and shared our situation with a few of our friends. They said we need to look at being at my moms as short term and that my mom is an adult and needs to not depend on us to help her financially.
I am feeling mentally better today.
JOY,
L

This is clearly awful!!!!!!!!

2009-03-01T05:46:00.000-08:00

Just a heads up~ if your not into whining than you may want to go else where.

We are at moms and it's AWFUL. We have not even been here 1 week and it's a toss up over who will lose it first ~Michael or I.
Just saying that is very sad to me because Michael is awesome.Laid back,things just roll off his back,he is very hard to anger,he is the voice of reason for me.On and on the list can go and this week all of this thanks to mom has gone out the window.To say she is hard to live with is an understatement.First this place is small and mom smokes~okay I smoke! Hate to admit it but I do.Michael was upstairs trying to have conversation with mom and he counted her smoking 9 cigarettes in the hour he was up there.I am lucky to smoke 9 cigarettes in 2 days. So needless to say this place smells bad. So bad infact that we stay in our room.This computer is in a little space by our room and the only reason I am on it is because she is at the store.If she were here I would be in our room with the door shut and a candle lit.And I smoke people!! So this is what our life has come too~being closed up in our bedroom. Thankfully we do have our own bathroom.
I am soooo worried that she (my mom ) is going to break Michael's spirit.We are I guess not intitled to have an opinion! I made comment about wanting to see Slumdog Millionaire and her nasty remarks really hurt.I guess if she knew what she were talking about it would be different but she hasn't seen the movie and clearly isn't close friends with those that acted in the movie so her words hurt.
I am very depressed. Thursday I left work early and just cryed!! This is just so sad and even sadder that we don't have any place else to go and don't know how to make this situation work.
Michael is off to church.This will be the 3rd Sunday I have missed.I don't want to answer questions about the living arrangements and how I am feeling because at this point I feel that I have nothing good or happy to say. Besides my sister and 8 others are coming over for dinner tonight so I'm sure I should try to help out some way. My sister is here from GA. I pray it goes well.
I am going to close for now. I beg for prayers!!
Much love,
Lolo

BYE!!!

2009-02-23T13:10:00.000-08:00

We won't have the computer for a few days.
It will be turned on at my moms sometime on Friday so until then. BYE-BYE.
Lolo

update on blog

2009-02-22T05:11:00.000-08:00

As you can see I have figured out a few things and have added them here but I am still learning. I have to remove a couple of things so this is still a work in progress.
I am off to my moms this morning. Joshua moved alot of his things yesterday and we discovered MOLD. So alot of cleaning needs to be done in what is going to be our bedroom before I feel comfortable enough to move my things over. My mom seems~sick~ all the time and I am wondering if this mold may have something to do with it.I have no idea where the water leak is or even if that is what this mold is coming from however,since I am not 100%healthy I am concerned.
I will update more later.
Best wishes for a great day,
Lolo

My blog

2009-02-21T04:08:00.000-08:00

You can see my blog is pretty boring unless you are just interested in ~well~me. I am sure you can see that I really don't know a lot about computers. I am hoping to change that and improve this blog even in just some small way.
So the point here is ~I am going to be adding things~ WOW! I know you can just hardly wait.
Hopefully later today you will at least get the picture of Sierra's tattoo I promised 2 weeks ago.

Ok,so Josh has still yet to show any interest in moving and if I as his mother am not mistakin-he wanted to move to his dad's to save money and Michael and I finally agreed to live with my mother to help all of us out financially. I may need to go back and read my own blog to make sure I know what I am talking about but I think this at least along the right lines. ANYWAY-I only have 1 week to get out of this apartment so I am thinkin someone like Michael is going to have to go over and light a fire under Josh.Every space in the apartment is empty except for our bedroom so we are clearly ready to go.
On the flip side I am concerned that Joshua is realizing that he has made a mistake in going to his dad's and this is possibly why he is draggin his feet. If we had some where else to go it wouldn't be an issue but we've given notice here and re-done our budget to include all my weeks off with no pay and an up coming surgery so there is no turning back right now.Please all of you who pray ~lift up my little guy (yes,I know he is 21).
Court for his DWI was post-poned until April so that's all the news I have there.
Sierra seems to be doing well. We really didn't talk alot this week which is strange for us. I mean we did our daily texting but didn't have our every day phone conversations. I'm sure we both are just caught up in our own lives right now. I'm sure I will talk to her today.
I watched a movie last night and I never watch movies but this one was really good.It's called ~Fireproof~. It is christian based. If you haven't seen it check it out at Blockbuster. Has anyone seen ~Slumdog Millionaire~? I'm sure it isn't christian based but it seems to be done all by unknowns to us so I am interested in it.
Ok, my hands don't think I need to type any more and I need to get ready to go to breakfast with my Sunday morning small group so I will close.
Take care all,
Lolo

Update

2009-02-19T04:04:00.001-08:00

Just a quick update before I head off to work.
I talked to Kim at Dr.Oro's office last night and after being on the Lyrica for 12 days she thinks I should now wean myself off of it since I see no change in my pain/burning. Also because it is expensive and no need to take medications that are doing nothing.At this point we are back to where we started before the Fibromyalgia diagnosis.
My dad had surgery yesterday. He has Chron's disease and he had a blockage. He looked well when I saw him. Praise Jesus!!
I have yet another week off work the first week off March and I may of already shared I am off the first week in April. I sure don't get why I had to change my TC surgery to May or lose my job and I was off last week and have these 2 weeks off coming up. The bright side of being off in March is that my sister will be here from GA. so we will have a chance to catch up.
Josh is still fighting the scabies. In fact it has gotten worse so because of that we are still at a stand still with moving. Sierra is doing much better from her staph infection.
Blessings to you,
L

Happy Valentines Day

2009-02-13T18:51:00.000-08:00

I hope everyone enjoy's Valentine's Day tomorrow. We were to have dinner with friends tonight. I sent Michael to go and enjoy himself I'm just not feeling up to it. I think I've been a bit depressed this week. I was off this week because Sydney went to stay with grandma. I think not having my routine and just something to do has kinda got me down.
I have been on the Lyrica for a week now and have not felt any difference at all.Tonight I am to increase my dose so we will see if anything happens. I got the report from the Rheumatologist and found out that my feet not only bother me because of the Fibromyalgia and Tethered cord but because I have degeneritive (sp)changes in my feet and bone spurs> OUCH!!!!!!
Had to take little Sierra to her well womens check up today so while we were there we asked the doctor about some bumps she has around the new tattoo. She has a staph infection.YUCK!! Thank God we had an appointment and thought to ask.
Joshua has court next week on his DWI. No clue what will happen there since this is his 2nd one.He has yet to start moving out. He is in no hurry where I am ready to get out of this apartment.
There is a women's conference I try to follow that hasn't come to our area for a couple of years~Women of Faith~ well they are coming to our area this year and I guess since I changed my TC surgery to May and they are coming in March when I would of been gone to Colorado I can go now. Very cool
Blessings to you

Fibromyalgia

2009-02-08T12:23:00.000-08:00

Well it's been a while since I have posted. Sorry about that.
As I said the last time I was on I was on my way to find out about EDS. The doctor took alot of time with me. We did a physical exam,blood work and x-rays. In the end he said I was very flexible and had lax joints but he does not feel it is EDS he says I have Fibromyalgia. He left me with that and said he would send his findings and thoughts on to my family doctor as well as Dr.Oro. I wasn't going to do anything with this new information but as soon as Dr.Oro got the information from the Rheumatologist I went to I was contacted by Kim (Oro's nurse) and informed that they would like to try me on Lyrica for the Fibromyalgia. I started that last night so a little to soon to tell if it has helped.
I continue to have good and bad days.My feet,hands,arms,neck and head are still issues most days.I am still struggling with memory issues and some days I talk backwards or stutter. I still am needing my Flexiril and Vicodin almost daily.
Yesterday I spent about 2 hours with Sierra at the tattoo parlor. We both love love love butterflies so she got a very nice sized tattoo on her back. 2 butterflies to symbolize the 2 of us and a stargazing lily flower in the middle and she picked the color purple to put in the butterflies for my Chiari. She said she was not going to go through another surgery with me with out something meaningful and important to her so she decided on going with a tattoo.She will have the 2 butterflies with her forever now. It hurt to see her go through so much pain for me but the tattoo is soooo beautiful and has such meaning to both of us that it is really speacial. I wanted to get the same tattoo only smaller on my foot but Michael asked me not to just because I don't feel well and I have this internal vibration all the time that the vibration of the needle would just be to much for me right now. I know he is right it is just sad for me because Sierra and I had hoped to do it together.
I will have Michael post the picture of Sierra's tattoo. I don't know enough about the computer to do it myself.
We are still moving in with my mom.We have most things packed just waiting for Joshua to get moved out.This week we are giving our living room furniture to a church friend who is in need.We thought it better that some one get some use out of the stuff instead of paying for a storage unit. We also have stuff for a garage sale to put towards the cost of going back o Colorado for my TC surgery.
As for my surgery~I ended up having to put it off til May. Shelley (my boss) was having a hard time finding care for Sydney in March and April but knew that in May her niece would be off school and could help out so she has offered to help me pay my insurance deductible and allow me to come back to work if I would put surgery off til May.Now we will head out to Colorado the last week in May.I hated having to do this but felt like I didn't have alot of choice. Money is tight for many people including us. The raise that I posted about Michael getting was taken away to cut costs at his job.Thankfully he does still have his job!!
Take care,
L

Elhers Danlos

2009-01-11T13:11:00.000-08:00

I am going to see a Rheumatologist on the 20th to find out if I have EDS. I think in my last post I was feeling pretty good. Funny how things can change. My hands hurt my fingers,wrists and my left elbow are a mess these days. My left elbow area hurts so much that I am not able to completely straighten my arm out and fingers feel best if I just curl my fingers up in to almost a fist.I also have noticed mostly in my left arm that when driving or using the arm alot I have a burning like sensation in my forearm. I do bruise easliy and I find that my fingers bend or are more flexible than my moms,son and husband. On some of the EDS sites you can pull up they will show pictures and I am able to do the things they show in the pictures. I am assuming that isn't good. I don't know but I guess we will soon find out.
My job is going better. Shelley (my boss) and I had a nice talk and worked everything out. I do know that I do at this point have a job to go back to after my TC surgery. As far as my TC goes I am still daily dealing with that awful pull like feeling I have in my head and neck.I feel like it does to some extent affect my range of motion.When my neck is tight it is very uncomfortable to turn to the right.My feet are still painful.Mostly my right arch and of course the low back pain.
We have been packing when and what we can. We will be moving to my moms the end of Feb. Surgery is 2 weeks after that.
Michael got a nice raise at work.We feel very blessed by that because so many are lossing their jobs. Going to my moms isn't the ideal situation but we also feel blessed there because so many are lossing their homes and have no where to go.This move is going to allow all of us to pay off some credit cards and in the end save some money.
I hope everyone is well.
Blessings,
L

Merry Christmas

2008-12-25T06:19:00.000-08:00

Happy holidays to you all.
This year has been full of ups and downs for us as I am sure it has been for many. Having said that I still have so much to be thankful for.
The rent situation here at the apartment has worked out and they have been kind enough to let us out of our lease so the end of Feb. we will be moving in with my mom.Not an ideal situation but it will be saving my mom and Michael and I about $500 per month.Joshua who lives with mom now is moving back home to his dad's in hopes of saving a little green as well. We will have the downstairs and mom of course is upstairs. I think we will be able to have the things we really need in the space downstairs so after TC surgery I hopefully won't need to go up the stairs for much of anything.
You all have read me talking about the Herbalife products Michael and I are taking~first as of yesterday I have lost 30 pounds~the bad news is that I posted about it on CCI and was banned from the site because they say I was selling for my own gain. I thought I was sharing something that has helped me lose weight since I don't exercise but they felt different so although it is sad they must do what they feel is right.
Sierra is doing pretty good. She still has back pain but right now they say to just keep taking vitamin D and come back in a couple of months if she doesn't feel better.She is moving in with Chuckie and his family when we move to my moms. She stays there alot so it won't be alot different for her.
Best wishes and health to you all.

Not much time

2008-12-18T04:31:00.000-08:00

Not much time to type before going to work.
I just wanted to share that Sierra's bone scan came back and it says ~no fracture of the L-5~ she says she thinks the vitamin D she is taking is helping a bit. We go back to the doctor this Friday and see where we go from here.
Things at work have gone from bad to worse although I am still there. I have never met people like this family. I hope this isn't the way all rich people are. I mean I am selfish I will admit but I would at least think they would have the best interest of the baby at heart. Maybe they do and I know I do so I guess that is why I am still there.
I bounced our rent check so we have to come up with $1060 today or face getting evected (sp).
I can only place all of this in the hands of the Lord cause I sure don't know what to do.
Stress has really affected my chiari and foot pain so please just pray for us. Pray also for others. There are so many others worse off than we are.
Blessings,
L

Just sharing

2008-12-14T13:47:00.000-08:00

Hi all,
It has been a few days since I have posted so where shall I start?

Lace,I am happy to hear you are home and that you had little to no complications with the surgery thus far.
Sierra had the brain and lumbar MRI and we found out she has a fractures L-5?!!
How did that happen you may ask~we have no idea but it can explain some of her back pain. Because we aren't sure what is going on we had a bone scan done on Friday. The tech. says Sierra at almost 18 is still growing and he thinks that could explain some of her back and leg pain.Won't hear from our family doctor until Monday or Tuesday.Sierra said that Saturday night she had her worst leg cramp, pain,whatever it is that she has had since this pain has been going on.She says that rubbing the area does help relieve the pain but tylenol doesn't. I got the written report from the MRI and it doesn't say anything about tethered cord but neither did mine in plain english.I got her some joint support from Herbalife. I guess right now we are just at a wait and see point. I hate for our doctor to put her on narcotics but I also don't want her in pain. She is my drama queen too so I am just paying attention to see what I can make of this~so far~nothing.
I am doing pretty good. I of course still don't care for my nanny position~I love being a nanny~it is the family that is so hard to work for.However the way the world is right now I am thankful to have a job.
We have a couple new Herbalife customers. I am very excited about that.We haven't weighed for couple of weeks because everyone is so busy this time of year.But we are still very happy and passionate about Herbalife. Michael had a hard time with leg cramps at night so I may of mentioned he uses one of Herbalifes products called"Niteworks". From night 1 he has been free of leg cramps and able to sleep through the night. Well with the tethered cord my legs ache,tingle and my feet hurt especially the arches of my feet.I have been taking niteworks for a week now before bed and I can say the symptoms have clearly been reduced. I am sooo happy!
I will update about Sierra as soon as I know more.
Blessings,
L

All is well

2008-12-07T13:55:00.000-08:00

All is going well.
Thanksgiving was very nice over at my dad's. Meeting my step brother and sister was great. I didn't feel uncomfortable at all. Michael and I both felt welcomed and enjoyed ourselves.
I had 2 weeks off from my nanny position PAID!! She said she wanted to keep me happy so she agreed to pay me for the time off taken by them. I go back tomorrow and see Sydney. I hear she has 2 teeth.
I am taking Sierra to the doctor tomorrow~she is going to be having a brain and lumbar MRI. Our family doc says she is low on vitamin d and shows inflamation and since I have the chiari gene it is best to have her checked.I can't wait to get my hands on the MRI report. I will keep you posted on how it goes.
Michael and I are still taking and enjoy the results we see and feel from the Herbalife. I am going to really try to build my business as far as selling and I look to leave me nanny position by my surgery time in March. If you are looking to lose/gain weight,have increased energy,stop fighting the fatigue or maybe get your diabetes under control please take a look at Herbalife.com and than let me know how I can help you. I thank God for these products and how they are changing lives.
Blessings to you,
L

Just checkin in

2008-11-25T12:20:00.000-08:00

Hope all is well for everyone.
Thanksgiving is just 2 days away. This year I don't have to cook ANYTHING!!. We are going to my dad's and I was told I didn't need to bring a thing. How nice. I am meeting my step brother and sister for the first time. WOW! I will let you know how it goes.
I talked to Dr.Oro's office today and have my tethered cord surgery scheduled for March. On the 17th I have a lumbar and brain MRI,on the 18th(my 10 year wedding anniversary) I see Dr.Oro and surgery is the 19th. I will be the first one of the day so I hope the doc has had his coffee and is wide awake. All I really know is that I have to lay flat for 24 hours after surgery. Hopefully recovery will be fast. I'm not sure I will have a nanny position to return too. They are very busy people and have become very dependent on me. Maybe I can get my Herbalife business off the ground and not need to worry about it.
Speaking of Herbalife~Michael went to his diabetes doctor today~his dosage on one medication has gone down and he will probably be off all the med's in the next 3 months. Praise the Lord!!!! He has lost 13 pounds and 21 inches. I have lost 19 pounds and 18 inches.Hopefully my weight loss will help my recovery.
Have a super Thanksgiving,
Lolo

did any one else see this

2008-11-10T03:55:00.000-08:00

Last night on Mystery Diagnosis they showed a girl who suffered for years with stomach aches,headaches and low blood pressure. She finally found Chip's WACMA website and went to TCI where she was diagnosised with chiari and had surgery there.She has gone on to become a model. I thought it was pretty cool to finally see for myself that we chairians were getting some attention.
I have been doing pretty good lately. I have recently found a product~Herbalife~not only have I lost 13 pounds and 9 inches in the first week of using these products but my brain fog has lifted and although I still have the"pull" feeling in my head and neck I am finding that I am using my muscle relaxor alot less and I have some energy.Michael is also using some of Herbalife's products and he lost 6 pounds and 16 inches in the first week but more importantly for him as he is a diabetic~his numbers are going down and he is able to sleep through the night thanks to Nightworks~he suffered from leg cramps from poor cirrculation.He has been able to sleep the last week.Feel free to visit Herbalife.com if you are interested in anything let me know and I would be happy to help you.
It is really cold in my neck of the woods.How about where you are?
For those of you in the chiari world continue to lift up Chip's family.Chip passed away Thursday night awaiting a liver transplant. Very big loss for those of us who knew of all Chip has done in the world of chiari.He will be missed but I know he is in Heaven watching over each of us.
Blessings,
lolo

39 and can't spell

2008-10-27T04:41:00.000-07:00

Did you all catch that last post heading where I spelled happy wrong???
Must be my age.

Happt birthday

2008-10-27T04:39:00.000-07:00

HAPPY BIRTHDAY~ TO ME!!!!!!

Have a great pain free day every one.

Hugs,
Lolo

deep heat massage

2008-10-20T06:40:00.000-07:00

Dr.Oro sent me a script for some PT. I need to find the time to look over insurance and figure out where to go.
I have decided that although I am not happy about having so much time off with out pay~it maybe a good thing for me to just have some time to rest and be off my feet.
I spoke with another chiarian yesterday and she has put together a support group for us chiarians in Missouri. We are going to be meeting in Jefferson city for lunch November 8th.I am very excited about this.Different things have happened since the decompression surgery and I feel like I have just maybe lost my way so I am looking forward to gettng back to my God and my chiari family and friends.
Michael and I are looking at doing a Herbalife program to maybe take off some weight. He is a diabetic so it is important for him and I am hoping taking off a few pounds would maybe give me more time before I just have to have the TC surgery.
Blessing to you all,
L

better

2008-10-08T03:42:00.000-07:00

I am feeling better. Very tired but better.
Monday night that thing that happens to some of us once a month ~came to visit me and my back~OMG!!! It was awful.I think I got about 2 hours sleep.I ended up back on the vicodin for the first time since the decompression surgery.
I left work a little early yesterday and just came home and relaxed.Michael re-filled my prescription of Flexiril so I am praying for a good day. I think stress played a role in everything coming to a head Saturday. Although I enjoy my new job they didn't tell me that they would be out of town a week out of every month for the next 3 months and I would be off WITHOUT pay. I need an income people!!
Anyway,I am even dealing with that a little better now.
I called or shall I say I e-mailed Kim and Dr.Oro yesterday and just asked short of the tethered cord surgery what if anything I could do about the "pull" in my head and neck and the back pain. Kim e-mailed right back and said my file was just put on Dr.O's desk and she would get back with me by Friday. She said she knew I had been struggling for a long time.She was very nice.I will keep you posted on what they say.
Blessings,
Lolo

Not sure what is going on

2008-10-04T09:21:00.000-07:00

I am having a really rough day.Very emontional.
I have had so many symptoms of my chiari come back this week and today it just came to a head and I can't seem to stop crying.
I almost feel like I need a babysitter this week and how funny is that ~ I am the baby sitter.
I had been doing good.I really enjoy my nanny job so I am kinda hoping that because I have been off this week and had so much down time that that maybe why things are going crazy.
My rapid heartbeat has been coming to visit about once a day,certainly not as often as it was before surgery but it is back for the first time in the 4 months since surgery.The brain fog is pretty bad,forgetfulness,desicion making,headache (3 headaches this week and not because rain is moving in)and it feels like my throat is swelling and there are pills or something stuck in there.
Trying to concentrate on re-reading this entry is awful. I can't describe these weird feelings.
Any way I just wanted to whine.
If any one reads this advice would be great.
Lolo

only 9 more days

2008-08-15T03:46:00.000-07:00

9 days left of watching my daycare darlings here. I start my new Nanny position Sept.2nd. I am very happy about this new phase of my life.I really like the family I am going to work for and in time I hope Baby Sydney really likes me.She is only 2 months old so I will give her a few days~ha.
Michael and I have really been watching what we eat and walking at least every other morning.Michael has lost 8 pounds and I have lost 5 in just a week.We will probably put it all back on tonight going out to dinner.
Sierra started school Wednesday.I was sad to see her start.I can't believe she is a JR. in high school.I see her even less now than I did this summer but I am soo proud of her!!! I can't believe I had a hand in raising such a great kid.She and Chuckie are doing good.Regina~Chuckies mom~asked her to move in!! Sierra said no.I had to ask what the difference would be~as she stays over there almost every night anyway.I think momma Regina is getting a little spoiled!Sierra does the laundry,dishes and many other things over there.Good thing I really like Chuck and Regina.
I think Joshua is doing well.We talk weekly but usually by text message.I don't remember the last time I saw him.Jayme I think I mentioned moved to Arkansas with her mom.I don't really know what is going on in her life these day's.
I am feeling pretty good.The headaches have mello-ed out it seems.Knock on wood.My feet are another story.Oh my gosh they are bugging me.I am pretty good walking but trying to sit in any one position for more than just a few minutes and they are tingling and freakin out.I really would like to put off the TC surgery for as long as I possibly can I just don't know if I am doing any kind of nerve damage or anything by waiting.I feel like I am just getting back to livin from the decompression so I am not ready to be down again.I think I may try to talk to my family doc and see if there is anything a person can do or take to help with the pins and needles in my feet.If any one has any suggestions please pass it on.
Have a super weekend ya all,
Lolo

Guess who called???

2008-08-06T03:43:00.000-07:00

So after sending a not really nice e-mail to Kim~Dr.Oro's nurse I finally spoke to Dr.Oro himself.
First,I spoke with Dee who wanted to make sure I was infact cancelling my appointment for next week.Than Renee called in the afternoon~she wanted to know what I wanted and why I was so unhappy.After trying to explain things to her and getting no where I told her I was tired of dealing with the office and I hung up.Less than an hour later Dr.Oro called~Guess what??? I have tethered cord.He apologized for all the confusion,asked how I was feeling and explained what was going on with me.My "band" is being pulled passed L-1 L-2~further than he would like it and lower in the lumbar area I have the spinal lipoma (fatty tissue) which is pushing and pulling the cord.He said he could do about an inch incision and "snip" the cord.In 2 out of 3 people this helps and is what is needed.I would have the surgery and need to lay flat for at least 24 hours.I didn't ask about down time becasue I had gotten the answers I was looking for already.He said to save on gas money,ect... he could schedule the consultation and surgery all in one trip.We agreed that I would continue keeping the journal I have been since the decompression surgery and if I continue to see no improvment in my lower body within the next 2 months to go ahead and schedule this procedure.
Sometimes I guess you just have to get mad.Michael says not everybody works as fast as I do and so I don't get the answer I want in my timing.HELLO~ I have been waiting 9 flippin weeks for some sort of answers. I do have the answers now so I feel better.The not knowing is very hard.
I have heard from Dr.Oro and I am happy with that however I am still feeling what I guess I will call ~ depressed~I don't want to do anything and I really don't feel like talking to anyone.I haven't been to church in about 5 weeks and I hate my job.Yeah I guess depressed is a good word.I am not really sure where this is coming from.Money- maybe- we are really struggling right now.I am just counting down the days til I start with my new family and get out of this apartment.
Maybe tomorrow I will update you about Nicole and the deported husband.
Much love,
L

Nothing new here

2008-08-05T07:35:00.000-07:00

All is well.
I was offered a Nanny position. I will start with my new family September 15th.I
am looking forward to getting out of the apartment.Michael and I are already talking about how we are going to re-arrange the furniture.This family is about 10 minutes from me so the travel won't be bad.The baby is 4 months old.A little girl!
I am 9 weeks post-op today,besides the pressure headaches,hand tingling,neck tightness and the lower body issues that never went away my fingers are going numb~especially my finger tips on my left hand.I don't know what it is all about.I canceled my 2 month post-op appointment with Dr.Oro.I just feel it is pointless to drive all that way for nothing.I am very unhappy with him as a doctor so I will just see my family doctor if needed and if things get worse I will find another neurosurgeon.
Lace~ I am happy to read that you scheduled your decompression surgery date.I hope all goes well.I am sorry though that you have to wait so long.
Stay well everyone and stay out of the heat.
Lolo

Yes,i am still among the living

2008-07-23T10:25:00.000-07:00

It has been a while since I've had anything to say huh?!!

Dr.Oro's office finally called today concerning my spinal MRI.He says there is something going on in there but wants to wait to really say to much until he comes back from the ASAP conference next week. I am supposed to e-mail the nurse next Friday and see if he learned anything new about tethered cord and what he wants to do with me. I am supposed to continue taking the Flexeril since it is helping with the tightness in my neck but nothing was discussed about the UGLY pressure headaches I get. So,I will continue to hurry up and wait.
I have 2 second interviews this weekend for nanny postions and 1 first interview.One of the second interviews I don't think is going to work out~1) because she isn't wanting the nanny to start til Nov.She is due with her first baby any time and 2) she is paying so much less than the other 2 are offering.I don't want to make may decision based on money alone but she isn't paying even what I am making now.Second interview #2 is about 35 minutes away from me but she is my kinds person~ya know what I mean?~and she is paying $700 per week~yes $700~ that is $300 more than I make now.My biggest concern with her is that they move often with her husband's company.First interview #3 is about 20 minutes from me in a very beautiful home and neighborhood,they are looking to pay $50 per week more than I make now which would just cover the gas.So-what to do??? All I know for sure is that I need to get out of this apartment.

Nicole sold the house and all the kids have new clothes this week.She is leaving in the morning to go to Mexico for a wedding so I have the middle child Alma for a little over a week.
The husband is going to take the plea offered and spend 10 to 13 months and than be deported never to come back to this country. We'll see about that!
Take care all and feel well.
Nanny Lolo

had a good weeked

2008-07-14T09:07:00.000-07:00

We had a nice weekend and I hope you all did too.
Friday night we didn't do anything. Saturday morning Sierra treated me to a pedicure.We went out to the mall and she bought some tennis shoes for school,we got a couple of smoothies and just hung out.Michael and I later went to the Plaza and walked around and ended up at the Cheesecake Factory. We went over the drink menu and tryed several different drinks,had dinner,ordered cheesecake to go and came on home and put our pj's on and enjoyed!!!
Yesterday we skipped church.We went to breakfast and to the store.I fixed Michael dinner last night and we just relaxed all day.
I have been feeling well the last couple of days.The Flexeril is working well for the most part.
Having a few new bladder issues so I am going crazy waiting to hear that Dr.Oro has reviewed the MRI.I know the office got it this time because I got notice in the mail it was delivered.
I have a couple of nanny interviews set up for this week.I pray that one will work out.
As much as I hate to admit this~we may not of done the whole apartment thing had we known I was going to do as well as I have.Providing care to the little darlings is hard in such a small place.
We still very much enjoy being here and it is much easier to take care of just not a lot of space for the kids.
Enjoy your week!!

TGIF

2008-07-11T03:47:00.000-07:00

It's Friday!!!
Got some rain going on outside right now. I love the rain.
Kim at Dr.O's office contacted me yesterday and said they are thinking the headaches are possibly an air bubble in my head which they say is common after surgery and the body will absrob it. So at this time they don't want to do any thing with it. I tracked the MRI cd and it says it has been delivered so I hope I will hear something about it next week.
Going to breakfast with my small group from church in the morning than Michael and I are going down to the Country Club Plaza. He got a gift card from work so we are going to see if there is any thing we'd like to spend it on.There is a Cheesecake Factory down there~yumm~ so we may grab somehing to eat and people watch.

Poor Nicole~ her situation contiunes to get worse. In yesterday's paper there was an article about her husband~he is in some trouble.He is being charged with several things and looks like he will be spending a lenghty amount of time in federal prison. The fines he could face are over 1 million dollars.What I am findng out is that Nicole herself could face some trouble for knowingly marrying him and his being an illeagal.My mother seems to think I could also be investigated for providing care for the kids.I don't know if this is true or not but I certainly don't want any trouble.Going through this with her is enough. So with that and the fact that I am finding it ~we'll say uncomfortable to provide childcare in the apartment I am looking into seeking a nanny type position in someone elses home. I don't mind a little more one on one,light housekeeping and even baking.I'll let ya know if anything comes of this.
Have a super weekend!

hangin in there

2008-07-10T03:07:00.000-07:00

Things are going well here.
Michael and I got up a little early this morning to go for a walk. It was really nice out at 4 am. We had about a 20 minute walk. Around our apartment there are sooo many pretty flowers and trees and they smell so good. It as really nice to get some fresh air.
I haven't been sleeping well so I am thankful I even got up for the walk.
I am on my second day of the Flexeril. It does seem to help some with the tightness in the neck area. I haven't heard back from Dr.O's nurse about the headaches and hand pain.The ankles are a mess too!! As I think I've said before my hope is that some of the things I am feeling again (still) are either because I am only 5 weeks out or the tethered cord.
I mailed the spinal MRI and paid to have it tracked so I can see where it is and the office will have to sign for it and than I will get something in the mail that they did get it. It cost a little more but I wanted them to have it before I go back in August.
Nicole did sell the house and she has until next Tuesday to turn over the keys as the buyers want the house that soon. We told her we would help her move out this weekend if need be.She says she is going to put things in storage and stay with her grandma until the 15th of July when the husband is sentenced and than she will decide what to do depending on how long he will have to spend in jail here. She was able to go see him last night.I am going to keep the middle daughter (she has 3 kids) for a week while she goes out of town. I hope I am up for it.
I pray everyone has a great pain free day,
Lolo

Dr.Oro's office called

2008-07-07T14:03:00.000-07:00

Oh my gosh~finally I hear from them.I was writing in my little journal I keep that I update once a week with how I have been feeling and suddenly the phone rings!!
Very cool.
For the head,neck and shoulder pain and tightness I am having they want me to try Flexeril.The headaches are more in the front of my head now so Kim (the nurse)wanted to talk to Dr.Oro before doing anything with that.I told her I put the spianl MRI in the mail she said "oh your the one whose MRI we misplaced".She said it was pretty important to come back for the 2 month post-op check up so no more waffling back and forth over whether or not I am going to go-I'm going to go!!
Has any one tryed the Flexeril before?
Nicole (with the deported husband) said this morning that the couple that made the offer on the house-they all finally came to an agreement until the inspector came and found some mold in the basement.Still up in the air for her but they want her out by the 15th.They are running out of time.I did tell her that I wasn't feeling real good about just hangin with no real time limit on the kids leaving or anything,she said she thought she'd look at apartments cause they could still be here awhile.No one knows much til he goes to court on the 15th.If anyone out there reads this and knows anything about how this stuff works I'd love to hear from ya.
It's another hot one out there today.I guess the mail will stay out there awhile cause me and heat don't mix well and it is a bit of a walk to the mailbox.Maybe I will take a walk in the morning before work.
Take care,
Lolo

It is awful outside

2008-07-06T14:59:00.000-07:00

It is soo thick out there.I am so thankful I don't have to work outside.I used to be cold all the time,since the chiari I am always sooo HOT so one of the blessing of going back to childcare is not having to get out.
Nothing going on.
The 4th of July was nice.We were with Sierra and Chuckie and his parents.The weather on the 4th couldn't of been more perfect.The rest of the long weekend was spent going to the store,cleaning the house and going to church.After church today about 16 of us went to lunch at a Mexican place.YUMMMM!!We have one couple leaving next Sunday for Russia to pick up the little boy they are adopting and another group leaving for Asia on a mission trip.They will be gone 16 days.
I have no more news concerning Nicole and her husband.After hearing of some of the things that the group going to Asia may endure and the things the group that just returned from Africa had to endure I have to say I am sorry for the things Nicole is going through but I can't hardly believe her when she says she HATES this country.I think her move to Mexico may be a real eye opener for her.(just for the record I would say this to her face so I don't feel this is gossip).I think she said her husbands court date is July 15th and the charges are~coming into the country illegally as well as idenity theft. I guess because the name and number on the green card were made up. I'd like to think I am getting the whole story but maybe not.My main concern is the kids.
I called Dr.Oro last Wednesday.I haven't been feeling great.The headaches and the hand pain and tingling were something I wanted him to be aware of and of course I wanted to know if he had any suggestions.No one ever called me back. I'd like to think they'd be a bit more concerned since I am just a month out from the decompression but maybe not.I did go get the second copy of my spianl MRI and will send it off tomorrow and see if I hear anything back.
A little bit busier this coming week since Jayde will be back full time. Alma is doing so good with the potty training I hope and pray Jayde will follow her lead.
Take care and good night.

oh my gosh

2008-07-02T03:39:00.000-07:00

Okay so ya all know of Nicloe and the whole moving to Mexico with the deported husband.
She put her house on the market Saturday,showed it for the first time Monday night.The people made an offer yesterday wanting to have the house by the 15th of July (yes July) if Nicole of course accepted the offer. I love Nicole and the kids but I also have to think about myself so I thought I needed to get moving finding some new daycare darlings so I posted a child care ad on Craigslist. In no time at all I had 2 people asking about my services 1 of which I am interviewing with on Friday.I was feeling fine thinking I had had a good productive day and ready for Nicole to tell me she was going to be giving me notice. Well instead of notice and losin the kids I find out they may end up being here a while. Instead of deporting her husband they have moved him to a prison and are charging him for coming into this country and this being his 3rd offense. He will be spending SOME time here in prison. She did make a counter offer on the house and now I still have no idea what is going to happen. Not only that ~ a little girl that I was not expecting to come back until August is coming back TODAY!!!! God is good yes - I just wish sometimes things were just a bit easier. The lady I am interviewing with Friday would only be part time but part time for 3 kids so if I take them on I could have 9 kids on any given day UGH!!
The sunburn is no longer burning so that is great. Other than the hands tingling and feeling like I have a rod shoved in my head I think I am doing good and I hope you are too.
Lolo

no reply people

2008-07-01T04:05:00.000-07:00

I can't answer your questions if you don't leave an e-mail!!

not the med's

2008-06-30T13:24:00.000-07:00

I checked the medications I am on and none of them say anything about staying out of the sun. I am no longer on any med's from the surgery so I thought I was ok.
I am feeling better today from the sunburn.The daycare darlings have been great and not all over me so it hasn't been a problem.
I have a childcare interview in just a little while. The leasing manager here at the apartment complex needs a sitter for her son so I hope I am able to help her out. With Nicole moving any time I am afraid to get to comfortable with the darlings I have. She put her house on the market Saturday so we will see what happens.I am interested to see how fast it moves. Things aren't selling to fast here right now.
I am feeling good. 4 weeks tomorrow.Has any one not gone to the Dr. for the 2 month follow -up?I'd like to think I could put it off but I am sure I shouldn't. Not really knowing about the spinal lipoma and many other things going on in my lower back I know I need to check in with Dr.Oro.
The hand tingling seems to be gone for now.I didn't notice it at all over the weekend.
Michael is good. He only has to work 3 days this week due to the 4th of July.We have no plans for the 4th.Sierra will be working late.Her dad,grandma and 2 uncle's are partners in a fireworks stand and have been for 27 years.I put in my 8 years while married to Scott. So needless to say I am not real crazy about fireworks.Heck, I'm the one that can't open a can of biscuts because the POP freaks me out.I can hardly believe I spent 8 years so close to fireworks - all of which POP. The one benifit~Josh,Jayme and I haven't ever had to pay for fireworks if we want them.Scott always does seem happy to fix us up!

check out the sunburn

2008-06-29T11:45:00.000-07:00

The company picnic was great. I am just paying for it now with this nice sunburn.I am all red and swollen but so far no blisters. I didn't really even think I was in the sun that much. I never burn so what's up with this??!!
I did make it to church and to the store today but I am doing nothing the rest of the day.
The real bad part of this is the sun I got on the back of my neck and on part of the incision that is not yet covered by hair.
Sierra got home from Idaho last night.She went straight to Chuckies so I haven't even seen her yet.At least I know she is safe and back in our home state right?!

so far so good

2008-06-26T08:46:00.000-07:00

Doing ok so far today. I wasn't real sure how the day was going to be this morning. I started out with an awful lot of hand pain and tingling.Although it is still there it isn't as bad.I hate it because it was the first thing I noticed that was gone after surgery and now it is back.I would like to think it has something to do with my job but I'd be using my hands doing most anything.
I had a wine cooler last night~first time since surgery.Boy it was good!! It was so hot out though that I started swelling right up so I just had the one.
I think I am going to try to go to the company picnic with Michael. It isn't often that I do get out and do things and when I do it is usually with church and since I will see them Sunday I thought I would try the company picnic. It looks like it will be in the low 80's and if I get to hot I suppose I can always do the dunk tank. Ha!
No more news so far on the daycare darlings and moving to Mexico.Are there some area's there that are safe? If so why did he come here in the first place? 3 times!!!
Lolo

day 3 of work

2008-06-25T10:03:00.000-07:00

Things seem to be going well here with the daycare darlings back after my being off for 3 weeks.
I'm feeling fine and not feeling like I've come back to work too soon.Just alot of tingling in my hands and feet.
Sierra got where she needed to be safely the other night. I think she is looking to be back home on Saturday.
It kinda seemed like I went back to work and things went crazy. The situation with Sierra and this one~Nicole one of the mothers I provide care for-she has the 3 kids I watch~her husband (only been married about 1 year) is being deported.He was caught being here for the 3rd time last Thursday and is in jail now waiting for the bus to take him to the border on Friday.
The last 2 times he has paid what they call a coyote to sneak him back in this country.I guess they aren't going to do that this time they are putting the house they have here on the market and they are all going to move to Mexico.I hate to see the kids go but they have to do what they feel is right.I have no idea how much time I have with the kids.Houses aren't moving very fast here so we shall see what happens.I hope they will be safe and I hope I can find some kids to love when they do go.
I called the place that has done all of my MRI's to get a replacement one of my spine for Dr.Oro.It is going to cost either $10 for a cd or $10 per sheet for the films.I took the cd. I hope to get some answers about this spinal lipoma and other things going on in my lower back. Once we decide I am ok I need to find out about getting my kids checked out.I pray they are ok.
We have 2 pinics to go to this weekend.Michael's company picnic is Saturday at 11 and a church pincic Saturday at 5. We are in the 90's here so I am thinking I should pick one or the other to go to and not try both.
I pray everyone is doing well.

Sierra

2008-06-23T13:17:00.001-07:00

Grandpa has passed and Sierra is on a plane on her way to Idaho BY HERSELF.She seemed ok with it,I however am very nervous. Please pray for a safe flight for her and kind people to help her.
It has been a very crazy,busy day.I never realized how much I really moved around in this small space with these daycare darlings.I am flat pooped.I hope I will hear from Sierra tonight upon getting to where she needs to be and I can get some sleep.
I am trying to convince myself fixing dinner tonight is a good idea.Not only have I not worked in 3 weeks I really haven't cooked either and we really need to start watching Michaels diabetes so I know I must.
Other than being tired and having some anxiety the only other thing going on is a bit of pain at the incision site.I felt that was pretty good with it being the first day back.

going back to work tomorrow

2008-06-22T09:59:00.000-07:00

I think I really went back to work this weekend.
Friday night Jayme (step-daughter) came and stayed with us and so did Kaleb. I watched Kaleb for a long time.He was about 4 months when I started with him and he is now 4.Although I don't keep him now during a work week we like to have him once in a while on the weekends so this was the weekend.We also had Christian.His mommy had some things she needed to take care of so we gladly had him too.I feel like I haven't slept in a long time.I think I may of been ok had I not had a baby in my bed.Oh well,I can always rest later right?
We went swimming and out to eat and have just played alot this weekend.
On a sad note~Sierra's grandpa (her real dad's dad) is hangin on to life.He went to the hospital for internal bleeding which led them to find out he had a tumor on or in his colon. After removing it he became very ill with a staph infection.He ended up needing to be moved from one hospital to another and is now in a coma. Scott (sierra's dad) is going to be heading to Idaho-where grandpa is- tonight but we are financially unable to get Sierra there.Keep her in your prayers please!
So, in my free time this weekend I have been reading and going over my spinal MRI~ya know the one Dr.Oro's office can't find. It doesn't say "tethered cord" it says-L3 and L4 disc levels have decreased signal and height as well as SPINAL LIPOMA.Also bulging annulus seen with mild neural foraminal encroachment and facet hypertrophy with fluid noted.
L4 and L5 says the same as well as lateral recess encroachment. What does this mean??
When I look up spinal lipoma I don't come with alot but what I have seen says it is in fact tethered cord or is a cause of tethered cord.
I have to go back and get another MRI cd and send it to Dr.Oro again so it is still going to be a bit of time before he goes over this and may not discuss it with me till I go in August for my 2 month post-op. I was really considering not going back at all and just having my family doctor order the MRI's Dr.Oro will want for my 2 month post-op but now I am reconsideing that just because I want to know what this spinal lipoma is.Any thoughts Lace??
Have a great week ya all.

not taking the job

2008-06-19T16:38:00.000-07:00

Well after "sleeping on it" and as excited as I was I have to tell you I am not going to be taking the job with Grandma's Catering.
First-After investigating more and talking to the owner of the company again I would have to do deliveries as there are people who don't want too who would be above me. We only have one vehicle so this is not a good thing.
Second-my parents were very sad and I think I may of been being selfish.
Third-a 5 to 600 cut in pay a month is not what we need right now especially not knowing my future with the tethered cord ect.
So,I think you all for the prayers and support but believe you will continue to support me.
I drove for the first time today.It really wasn't bad.The biggest thing is turning my head to see behind me when backing out.I went slow and had no trouble so I am happy about that since that is a big step just 2 weeks after surgery.
Going to the doctor tomorrow with Michael for his diabetic check up. Got lots of question cause I think things have gotten a little out of control for him while he has been taking care of me. No more eating out!!

Guess what

2008-06-18T10:42:00.000-07:00

I got the job!!!!

I don't know how I feel! I think I am in shock.
I haven't gone on an interview in over 10 years and the first one I go on I got it.It is 2 blocks from my apartment and the people there were so wonderful.I talked to the owner of the company for over an hour and he said"I am going to look you in the eye and tell you if you want the position you are hired" I than spoke with the manager and he said he agreed with David (the owner).
I have told 3 of the 4 daycare mommies.They are sad but say they understand.I think my saving grace there is the fact that the darlings have been with someone else for 3 weeks already.
Thanks for the prayers.

prayers please

2008-06-17T14:22:00.000-07:00

You all know I have lost my passion for my childcare business.

I have a job interview tomorrow. It is a little grandma's catering business not even a mile from me. I can pick morning hours or afternoon hours and full or part time.
Sounds to good to be true~ I know but I am going to go check it out tomorrow and see what happens.
God's will be done!!

Dr.Oro

2008-06-16T15:51:00.000-07:00

I just want to vent a minute.

I am getting a little more than upset with Dr.Oro's office~
My very first visit with him was in April.At that time we walked out knowing I had chiari and he thought surgery was the best thing for me. My homework was to come home and have an entire spinal MRI and a pre-surgical physical done.May 4th I had the 2 hour MRI and sent it to his office as I was told too.I still can see the little box containing the cd MRI. 1 week later I had the physical which my family dr. sent him.I called 2 weeks later to make sure Dr.Oro recieved both the MRI and the letter from my doctor.They had staff changes so they would need to call me back.Stacey was no longer his nurse who I could direct my questions to but Renee now had that job-ok, no big deal.Renee said this is my first day can I take your info find the things you are asking about and call you back-Sure I am fine with that.Of course she didn't call back.Another week goes by and I have 2 weeks til decompressin surgery I need to know if those things I was told to get /do had gotten where the were supposed too.This time Renee says yes both things are here and I will put them on Dr.Oro's desk. GREAT!!! I can relax.
I get to my pre-op on June 2nd.After going over the surgery for the next day I want to know his take on the spinal MRI I sent him.He doesn't recall what I am talking about so I show him the written MRI report I have with me.As he reads he says"interesting -very interesting" I said "I have tethered cord don't I" his reply was YES.I looked at Michael and said "I told ya".Dr.Oro sat there for a minute and thought about changing the surgery we were doing for the following day and I said that is not what I had in the plans so let's do what we had planned and see if the decompression does anything for the tethered cord.Yeah yeah that's what we will do.He asked if he could have my MRI report copy and I asked that he copy it so I could hang on it what I had,he did and put a yellow sticky note on it for his office staff to find that MRI cd.
I saw him twice after surgery,I asked him twice about the cd before being released,the first time he says oh I don't think it is going to be anything.Upon leaving the hospital I asked him again about the cd-I think my staff found it it was in a manilla (sp) envelope.NO IT WASN"T!!! It was in a cute little cd box from the post office to mail cd's.
Ok.I have left it alone for a couple of weeks. I called last week to schedule my 2 month post-op.While talking to Teresa I asked about that cd.She was"going to get her hot little hands on it and call me right back.Thursday still hadn't heard a thing.
I called just now and spoke to Cindy.They still have no idea what I am talking about so now I get to pay for a copy of that cd since it is LOST.I will hand carry it to him in August when I go.
The other thing.I asked if the appointment was correct in August~ Yeah,I am supposed to go next door for MRI's at 2 but be at Dr.Oro's office at 2:30 to review those MRI's. Is that even possible???????

Yes I have had brain surgery

2008-06-15T15:00:00.000-07:00

I am showing you my shrit not my boobs.

I also got my staples out Friday!!! YEA.
I feel so much better just having done that.

Saturday I got out with Michael and went to the store,to rent some movies,tanning and I even did about 15 minutes of exercise.

Sunday~today I got out and went to church and now I am tired.
Oh it was so great to see everyone at church.I don't think I have ever hugged that many people before.Only 1 person hugged just a little to tight.
I think if asked today that yes this surgery has been a success. Yes,I would probably do it again.
The things that are still bugging me are the lower back pain,tingling in one foot and just basically having to still take it easy.
Saturday 3 of my little darlings came over to visit and I must say I am glad to be taking off another week.After about 45 minutes of them running around I was done.

Until next time!!

staples come out tomorrow

2008-06-12T11:59:00.000-07:00

Doing pretty good so far today.
Getting the staples out tomorrow and I hope it will release some of the pulling I feel in the lower part of the incision.
I don't know what your weather is but boy we have had some stroms and my heart goes out to all these people displaced because of these tornado's and the flooding.
I got a phone call today from one of my daycare darlings mommies it seems Lily is having a hard time listening to the fill in babysitter and when Lily was asked why she wasn't listening mom was told"I don't like Angie~I want my Lolo back".
I needed that call-I know I am loved by those kids and I love them too so it helps in going back to work. sometimes I think I want to do something else or nothing at all and God let's ya know doesn't He?
I had a couple of e-mails today about an article in our local newspaper. A full story on a lady that lives not far from me who has chiari and tethered cord.She is going to TCI and they are going to film her surgery. Very cool that we are finally getting the word out.

alone at last

2008-06-11T08:27:00.000-07:00

I am finally home by myself!!! SSSSHHHH I better not say that to loud cause some one is sure to come "check " on me.
Doing about the same as yesterday. My headache is about a 3 today and not the 6 it was yesterday. I am still very upset at my stomach.This has me a bit confused because I didn't have stomach issue's before surgery.My headache is in the right side of my head more so today than yesterday. I have some lower back pain and my left foot is just tinglin away.
I am hoping some of this head pressure will be gone Friday once we get the staples out.
Michael and I talked and cryed and went for a ride last night.I just want to be so much better than I am right now.We know that in a couple of ways like as far as my hand pain the surgery has helped but in other ways I am not noticing any improvement yet.Yes,I know surgery was just last week. I expected more. Any way,I have this list of over 40 things that have been issues for me since the chiari,Michael and I deceided to print those things off on the computer and check them off as I am no longer feeling them so that I can see that things are changing.
Another thing that has us bugged- me of course more than him- is that I have not "felt" my job in a long time.I do not want to go back to work. For many years I have spent my life taking care of wonderful daycare darlings.There is no longer any passion in this for me it is just a paycheck that we need.On the flip side-we only have one form of transportation and Michael takes that daily,the kids come to me-I don't have to get out of the house in bad weather or heat,I can keep my place clean and still have the darlings here and I make good money so what is the problem??? I am wondering as I do if these things like only one car ect... are God telling me this is where He wants me and that I need to get over myself.
Any thoughts,feelings and or advice from you I would be greatly open too.
Lolo

not feelin soo groovey today

2008-06-10T10:26:00.000-07:00

I don't know what is going on today but I can not shake this headache!!! It bugs me cause I was hopin to start feelin better not the same or worse.
I got out and went to my regular dr. yesterday.He said the incision looks good,still some swelling but good.We agreed to have the staples out Friday.
Michael went back to work today. They were very glad to see him. Maybe with getting out of the house yesterday and Michael not being here today that is why I am feelin yucky. Not sure but I must say I do have a HEADACHE. Feelin upset at my stomach as well. Just flat crappy. As far as even asking myself why I had the surgery ect... This too shall pass???
Sierra has been wonderful.I felt like I had to kick her out so she would go do something with her friends.Today she vacuumed and is doing laundry.She works tonight as she did last night.
I have been very blessed so I feel guilt for feeling bad ya know.
I think I will close not real sure what I am even carrying on about

going to the doctor

2008-06-09T07:21:00.000-07:00

I am going to go to my regular doctor today.I feel that the incision site is warm and feel that I may still be having more pain than some. Of course I am new to this so I am going to question every little thing. Michael goes back to work tomorrow so I ~ we ~ thought it best to put our minds at ease.
I got a bit fussy with Michael this morning. Yesterday he was going to do several things for me and instead we ended up laying around all day so when I got up this morning and still those things weren't done but he was already in front of the t.v. I got a little upset. I stepped away and realized that my mouth was not needed I was able to aplogize and move on.
I hope you all have a good day.
I will let you know what the Dr. says

priaire dogs

2008-06-08T12:54:00.000-07:00

This one seems a little mad that we wanted his picture.

aren't they cute!!

Mom thought we should try to bring one home with us.

mom dad and me

2008-06-08T12:47:00.000-07:00

This is us before surgery just outside the Crestwood Suites. See mom has on her Conquer Chiari t -shrit.

my before and after pictures

2008-06-08T12:27:00.000-07:00

Although I already had very short hair here I am with my new Zipperhead.I have 18 staples. The incision is much smaller than we had thought we were going to need.Dr. Oro said I had very good tissue to work with.

doing ok I think.

2008-06-08T07:04:00.000-07:00

Working on day 3 at home and I think things are going well.
I called Dr.Oro's office yesterday and asked about that "spot" he said it was ok and not anything he felt uncomfortable with and I guess if it were a CSF leak I would know it with the king sized headache I would have.
So just a couple of things I'd like to get off my chest. I am not having any pain in my arms or hands since surgery which is good but I do have a headache. I have a shooting pain headache when I sit down or stand up and than I guess just a constant pressure in the back of my head.Everything doesn't just go away right away huh????Should I be trying to wean myself off the pain med's he sent me home with??He gave me 30 percocet and 8 toradol for pain. And skelaxin for spasms.I have the whole body spasms when I am trying to go to sleep.It feels as if I am going to fall or something and I jerk myself and Michael awake.
Hopefully we will get some pictures on here today.

I have a question

2008-06-07T07:30:00.000-07:00

I am doing ok this morning I think.Just one area of concern.After I got out of the shower and was kinda feeling around back there on my head I felt a sqwishy soft spot.Is this ok??????
I don't want to develpoe a spinal fluid leak but I also don't know what a CSF leak is any way. I just have a really soft spot back there and I don't know if it should be there. Any thoughts would be great!!

I am home

2008-06-06T13:41:00.000-07:00

I am home and moving around like a little grandma.
So the trip to Colorado was uneventful.We got there Sunday early evening and had a relaxing night. I already said that at the pre-op Dr.Oro went over my spinal MRI that had been misplaced an he is thinking there is a good possibility of tethered cord.Something we are going to deal with later.
Anyway we got into some stroms last night coming home but Michael got us here safely about 1 am.I am feeling pretty good.Certainly not like someone who had brain surgery 3 days ago but also not like I'm ready to run around the block yet.
I don't feel like I have a headache it just feels tight in and around my neck area.I have 18 staples that will be removed next Friday.I think I will go crazy being off work the next 2 weeks but I know I have too.
Take care.

going to the hospital

2008-06-03T06:15:00.000-07:00

Fixin to take my morning pills with a LITTLE sip of water and we will be heading to the hospital.
My dad got here fine last night.Well I say fine~he got into a major hail strom in Kansas and had to pull over for a time.There is alot of damage on his truck. Oops and he came to Colorado for me.
We did dinner and had a nice time.He and my mom did fine.They have been divorced 38 years.
Mom and I came back to the room and dad and Michael went over and had a couple of drinks.
I tryed to sleep~sleep just wouldn't come.I had to stop eating and drinking at midnight so at 11 I was eating peanut M&M's and having a Dr.Pepper.
Anyway things are going as planned at this point we will worry about the tethered cord at some other time I suppose.
Michael will talk to ya all later today I hope.

tethered cord

2008-06-02T13:00:00.000-07:00

Just got done with Dr.Oro and pre-op.
Guess what ? I have tethered cord too!!!

we are on our way

2008-06-01T04:51:00.000-07:00

We are on the road and Michael and mom are doing fine so far up front mind you we have only been driving for 15 minutes so far. Ha
Got a bit of sleep but nothing to really write home about.
I made peace with my step-mom yesterday so dad is happy. I guess after 16 years they don't plan on splitting up or anything and being a step mom myself I know it can be hard.
Talk to ya soon,
Lolo

I'm ready to go

2008-05-31T10:26:00.000-07:00

Let's go already.
We would go ahead and go but we gotta wait on mom who won't be ready til tomorrow!! She had to work half a day today and than needs to pack and do her thing so we will wait.
I went to breakfast this morning with 4 ladies from the womens group I am in at church. Michael went to the store and bank and did the last minute things like that that needed to be done. I go my hair cut SHORT yesterday. I think she used a number 2 on the back and sides so maybe that will help Dr.Oro out a bit. Ha!
Kinda seems like it is going to be a long day. I was really hoping not but yeah,I think it is.
Michael will be updating this for me next week. He is a bit slower than I with this so bear with him.I know he will get out what is important.
Enjoy your day!!

leaving in 2 days

2008-05-30T03:13:00.000-07:00

I'm feeling ready to go people.
I am not~and I am happy to say~ feeling oh poor me.I am going through this surgery for a reason~ a reason I may not totaly understand at this point but God does and right now that is good enough for me. I had my little freak out moment when I blacked out last week and I cryed and cryed.Today because of many of you and you support and kindness and our Lord above I am really feeling a peace. I certainly don't think it is going to be peaches and cream but it will be what I make it.
I have had some really bad days and I think I will again but I am thinking my attitude and faith in the Lord is going to set the tone for things to come.I do want to work out again and laugh with my family. I've always been the family jokester so they have been kinda lost. I want to go for walks or to the movies and get back to that pretty awesome "teacher" I have once been to these little darlings.
So we are on our way Sunday morning.
I will share every bit of the way.
Love ya

2 other chiarians to be in colorado

2008-05-29T04:39:00.000-07:00

So yesterday got a couple of e-mails from 2 other ladies that will be in Colorado the same time I am. Cathy is coming from Alabama and is looking to have the tethered cord surgery on the 5th.She is coming alone and staying at the Strawberry house.I've asked Michael to check in on her since she is coming by herself. Kelly is coming in from North Dakota. This will be her first visit with Dr.Oro so she doesn't yet know what the future holds.We plan on trying to get together on Sunday evening. It will be nice to meet others struggling.
I was really worried about what to do with my wedding rings but thanks to Lace I think we got that covered now.I am thankful because as I said before my rings mean alot to me and I don't want to take a chance of anything happening to them.I know they could be replaced but I took my vows with these rings and that is something you can't do again for a first time. I'm crazy I know. Maybe Dr.Oro will fix that while he is in the brain as well as the whole " I need junk food thing in there"
I am starting to get sad about leaving Sierra. She is my baby girl and I know this is going to be hard on her.Yes she could go but we all decided it would be best for her to stay because it is such a long trip and not alot of entertaining will be done.
Saying good-bye to some of my daycare darlings is going to be tough tomorrow too.
We are going to do dinner with Josh on Saturday so I will get to see my bubba!
It has been a lite week for me really. I am running out of things to clean and pack. So ya all keep talking!

sleep~I need sleep

2008-05-28T03:19:00.000-07:00

I have been up since about 1 am my time with the most horrible back ache.My monthly friend came to visit and I feel like shit.My periods have gotten alot worse since the chiari~just fyi for those who wanted to know that.The back ache last night went down into my legs and it just sucked.I am thankful however that I am going to get this over with before the surgery.
I was on the WACMA website yesterday and I was lookin at Chips pictures of the surgery I mean the surgery in progress if you have not seen these pictures well they are um kinda nasty.I was able to make out the dura and such though anyway. Those pictures have STUCK with me.I've looked at them before and they have slipped my mind~not this time! That's fixin to be me.
One concern of mine which may be dumb is my wedding rings.I know I am going to have to remove them I just don't know what to do with them.I don't want to leave them at the apartment and I would hate for Michael to misplace them if he put them in his pocket or something before surgery.I know this should be the least of my worries but my rings and the vows I took with them mean alot.
Yesterday was a slow daycare day and oh were the little darlings ever fussy and tired from the long weekend.We all took a nap as I hope is the case today.
I'm boring this morning so I will close now.

one week til surgery

2008-05-27T03:15:00.000-07:00

One week left!!
It seems like it has taken forever for the surgery date to get here. I'm sure this will be the longest week of my life.
Got some things done this past weekend to get ready to leave.Cleaned the apartment really good,went to the store for some things we can snack on on our 8 hours drive.I think I talked to everyone I needed to touch base with before we leave. We even got some things packed. I am easy to pack since most of my time will be in the hospital.I bought some PJ pants and tank tops,socks and even some panties yea!!! We bought the thing for my laptop so I can use it in the car or where ever,found the camera.Maybe after surgery Michael and I will finally learn about putting pictures on here.
This week Michael works 3 days. He will get the truck detailed and the oil changed.Friday afternoon he is going to watch the daycare darlings and Sierra and I are going to get our nails done before I send her off to her grandma's.I'm sure she will stay plenty of time with Chuckie as well.I feel like she will be in good hands.I guess if I am to worry about any of the kids it would be Josh.He rents the basement area from my mom.So mom and grandma are both going to be gone.
I know he will be working and hanging out with friends,I just hope he has some one he can lean on if he has a bad day.Mom,Michael and the kids are going to wear the chiari t-shrit's Tuesday.I thought it was pretty cool since that is surgery day and the reason for the surgery.
I'm feeling pretty good right now.I had a few issues over the weekend as far as feeling like I was going to pass out but I was able to get control.My hands and ankles have really thrown me a fit as far as pain but for the most part I am doing ok. I won't have a babysitter today for myself so my prayer is that I make it through the day with out any trouble.
Keep me laughin this week ya all.

made it to the weekend~aaahhhh

2008-05-24T05:49:00.000-07:00

Hi Hi hi,

Sierra stayed home with me yesterday to help me with the daycare darlings.I was oh so weak and tired. Do you ever get enough rest?I feel like I am always tired.
So last night I felt well enough to do a shot of crown royal in memory of my brother. It was gross but Jason,I got it down for you.I love ya man! We will see each other again.
Every year since my brother has been gone my mom,son,sister,husband and daughter have done 1 shot of Crown Royal on his birthday.It was his favorite drink and a little way in which each year we can remember him. Not for everyone I know but we enjoy it for Jason and because of Jason.
So Michael is at work~thank goodness it was only 1 shot huh?~I slept in and am now just starting to get around a little bit.I woke up to lots of rain.I also had a wonderful e-mail from Becci she is in the womens group I go to at church.She and her husband are on their way to Tver in Russia.They are adpoting a baby boy. How awesome is that!I can hardly wait for them to bring that baby back home so we can all enjoy him.
No plans for the weekend.Michael will be home in a few hours and I may like to go for a very short drive as I have not been out of this apartment since last Sunday. I like the place that much. Ha! I do like the place but today I wouldn't mind getting out for a bit. Many of the area pools have opened but in my area I am not thinking they are going too get to much use any time soon.
I guess we need to figure out what we are driving to Colorado next Sunday. My moms car is going to get the best gas milage but I feel to small.Our truck is much roomier but will take about $400 in gas so I think we may take the grandparent's mini van.The gas may be some where in the middle of ours and moms but to me the space would be lovely!Some sort of comfort is what I am most interested in on the way home.I've packed a few things in a little bag I will want with me at the hospital but other than that haven't done much to get ready.I talked to Dr.Oro's new nurse ~Renee ~ everything I needed him to get he got so we are ready as far as that kinda things goes.
Let me know if you took any thing that may of been of comfort to you to the hospital.I am sure I will forget something.
Love ya

It's Friday

2008-05-23T03:18:00.000-07:00

So as you can tell from yesterday's header~I don't know how to spell.
I'm telling you it has been an awful week.
So yesterday I blacked out. I got up from the floor pretty fast to get onto one of my darlings and that's all I recall for just a few seconds. I saw light and grey sqwiggles (sp) and than I found Lily~the little darling who was giving me fits.I tryed to recover with putting a cool towel on my face and neck and laying down but it was almost as though I could feel another spell coming on again.I had major balance issue after this and than my cell phone rang-it was Josh-I freaked out just started crying and knew I couldn't talk I needed Michael to come home.This morning I am oh so weak and have the shittiest(is that a word?) taste in my mouth.
Ganna rest before daycare darlings arrive.

it's rainig

2008-05-22T04:04:00.000-07:00

It's raining here in my neck of the woods today.I love the rain just not real crazy about lighting.
Michael let me ramble on last night so I got a few thoughts and feelings off my chest.Even though he didn't really talk back I think it helped.Right this minute I am feeling a bit better than I did yesterday. One of the nice things today is that school is out for one of my daycare parents so instead of expecting my first daycare darling at 6:30 I have an extra hour before any darlings get here. Michael thought I should of tryed to sleep inn but I have my routine so I declined.
One thing I hadn't thought of for before surgery is~ not to get sick with the flu or sinus infection or just any bug for that matter before hand.I hate to go and be ready for the BIG day and be turned away because I am under the weather. So I plan on just resting alot this Memorial weekend.I have no plans for the long weekend and don't want to make any.Just laying around and getting my witts about me sounds so good!!
The new apartment is still good good good with just one little complaint-our upstairs neighbors. I can deal with the fact that there is at least 6 people up there and the noise of walking/stomping across the floor the issue I have is ~ I have tryed to go sit out on the deck at least twice now and found a big mess on my deck from them. Our first sunday here I went out to enjoy the deck and had kitty litter falling all over me from them sweeping the deck I guess and than the baby dropped her bottle/cup and I got covered in milk.When they realized what had happened ~Debbi~ came down the next day with a hanging basket and an apology. Last night I went out to enjoy the deck and relax from the day only to find ashes and chocolate milk all over my new patio furniture and cushions. I mean the milk was in puddles. I must admit I was pissed.I had a bad day yesterday and finding that made me crazy.when Michael got home he went up there and had them come down and clean the mess they had made.Of course they are sorry and again I accept the apology however I'd like not to find that again.

one fine day to one really crappy day

2008-05-21T03:21:00.000-07:00

Ok so I just want to vent,turn away now if you don't want to read it.
Yesterday just flat sucked.Very surprising and disappointing because Monday was fine.
I think I must have PMS~I am just in one of those places where I don't like my job right now.I'm tired of the little darlings being up my butt and always always under my feet.I want some space. I need some space. The fasting did not go as planned yesterday.Nothing went as planned yesterday. I ate everythingt that wasn't nailed down.I love the aparment But- but what- I just don't know what the deal is!I don't want to talk to anyone but you guys,I just want to be left alone.I want to have the surgery so I can have a whooping 3 weeks off before killing myself going back to work. I am stressed about money and we've had so much help that should be the furthest thing from my mind.I am not overly crazy about my mom going to Colorado right now.I am only for that so that Michael has some support. Why am I so funcky when things really aren't that bad or bad at all.I tryed to get drunk last night but after 3 drinks I was bloated and uncomfortable so that didn't work either.I am unhappy about caring about everyone but myself I think.I have posted before about "all the faces" I have to put on for so many people.I am way tired of that today too or again.I guess to Friday would of been my brother's 28th birthday.He is gone!! He has been gone for 6 years.His beening gone hasn't bothered me in past years like it is this year.Maybe it is because of my upcoming surgery~not sure about that but it sounds good.
Please keep me in your thoughts and prayers.Any advice~please feel free to send it.

I hit the back of my head

2008-05-20T04:13:00.000-07:00

Everything really went smoothly yesterday until I smacked the back of my head on the freezer door. I was getting some ice and bent down to get one of my little darlings~Christian~when I came back up pow.It knocked me for a loop for a minute.Thank goodness Sierra was here to help until I regained my composer.I became very sick at my stomach and the inside of my head felt like it was on fire as well as down the right side of my face.I am feeling much better this morning and am very thankful I have not had surgery yet because I hit right where the incision site will be.
Babysitting at the apartment was fine.We did alot of floor play,coloring and the older ones did some worksheets.We went outside and blew bubbles and just got used to being in a different space.I was very pleased.I extended my hours to give the parents more time to get here from work due to us moving further out but as of last night everyone was still here by 5:30.
Michael had the most beautiful flower arrangement delivered to me yesterday.Purple is my favorite color and how fitting since it is the chiari color too but I never knew so many flowers came in such beautiful shades of purple.Also the upstairs neighbor came down and brought us a hanging basket of ivy,so how could it not be a nice day!
Sierra has yet to spend the night in the apartment.I think she has moved in with Chuckie.All of her things are here though.Chuckies place is closer to her school and work so it is easier for her to get around over there.
I fasted all day yesterday and did find a couple of times I did pray when I felt hungery.I am going to try to continue on today.
Blessings to all!

fasting

2008-05-19T04:12:00.000-07:00

I am going to really try to "fast" for a time.
Reasons behind this are~I am really wanting to hear God and the closer it gets to surgery time I am feeling it a bit harder to pray or really even just speak to the Lord and this is not what I want. So I am hoping that those hunger pangs will remind me to focus a bit more on our Heavenly Father.
I just read Katies overflowingbrain blog and the reciepes she has posted sound sooo good. I even copied them.I am an emotional eater so I really am hoping and praying this fasting will take me where I am looking to be.
Our apartment is amazing if any apartment can really be that good.The space is great.The 2 bedrooms are at oppisite ends so Sierra coming in late is very unlikely to bother us if we are in our room sleeping.I am really excited about being able to get back to "teaching" the daycare darlings the things they are going to need to get ready for school.I have 3 I am taking off the bottle and we are going to potty train.I set up the main bathroom in colorful fish decor.Very bright colors for them-poor Sierra- she has to deal with fish.She doesn't seem to mind at all though.Thank you Sissy.
I'll let ya know how the first day goes.

the apartment

2008-05-17T16:18:00.000-07:00

We are moved in!!!!!

Thursday I felt soo bad that I was really concerned this apartment thing was really going to work.Friday morning Michael had 4 co-workers show up at 8 am.
Sierra and Chuckie were also there and the things were out of the house by 9:30.
Michael was back at the house to watch the daycare darlings by 11 and ready for me to go to the apartment and have Chuckie and Sierra do,move or go get whatever I needed or wanted. When I got here the beds were set up with the sheets and all on them already.The living room furniture was just where I would of put it had I been here myself,pictures were ready to be hung.It was great and they all moved soo fast.The only BIG thing that has not been done yet is the hanging above the fireplace of our flat screen t.v. We have a friend from church coming over tomorrow to do that for us.Michael thinks he can do it he just doesn't want to mess anything up so we'll wait.No big deal~
Today the cableman came and got us all hooked up.We bought a dining room set and patio furniture which was delivered today as well.So things are moving right along.
I am feeling really rough so I am soo thankful so many people have been willing to help.I am writing this while Michael continues to do a few things,he won't let me do anything tonight.I am thankful he understands and is very caring but I also feel bad cause I feel like so much is on him.I tryed to have a couple of drinks with him last night just to relax and enjoy the deck~that didn't work.I got one drink down-started on the second and promtly became very sick to my stomach.I was in bed by 7.
I found a new nail place today. I really liked the place itself and the people and they did a great job on my nails.I walked across the parking lot to the coffee place an told the guy what kind of coffee I was looking for.He hooked me up and even bought the coffee for me.I felt very moved by his kindness.I felt God saying to me that it is time to face the fact that you are fixin to have surgery and I am going to be with you.Not just in the free cup of coffee but in the whole last couple of days and how things have worked out and people's kindness and goodness.God is saying~Let go and let Me.

stacy

2008-05-15T04:08:00.000-07:00

Well well well. My sister finally "got it".We talked for a long time again yesterday and I think she is coming around and taking the focus off of herself for a minute. I also realized that she does have some good friendships in GA but I don't feel they compare to the relationships I have with my church family especially my womens group and I don't think she has the peace in her life over many issues that I do ~like our brother.She also doesn't have chiari and all of you wonderful people -so I am ok that she lives so far away.She e-mailed me last night and asked me for advice about starting to read the Bible. Wow!!! That was pretty cool.
I think I am starting to get a bit nervous about surgery and probably even moving,we have been here 10 years.I was emotional yesterday and just didn't feel well. I asked Sierra after we moved and were a bit settled did she want to go get her nails done with me and that made me cry.I am so crazy about my daughter and I wish she could come to Colorado with us but it isn't right for many reasons so I guess I feel I want to spend what time I can with her right now because none of us know what to expect I will be like for a time after surgery.
Michael loaded the trailer last night and is taking the first load over to the apartment today after he goes to the church and picks up our rent check.We are going to be outta here in nothing flat tomorrow.Michael pulled out the washer and dryer for me to "clean" up a little bit so he could move them-oh my gosh-it was nasty.I was fixin to take the vacuum down and use it and it doesn't wanna "suck"stuff up so that sucks.I know we will get things taken care of. They are not calling for any rain this weekend so that is wonderful.Our dining room table and patio furniture will be delivered to the apartment Saturday and they even put everything together for us.How wonderful is that?!
I hope you all are doing well. I was thrilled to finally hear how Dee is doing yesterday.My blog is very plain right now but for me at this time is serves it's purpose.I am thankful for you guys and your blogs,it really gives me something to look forward to each day. So blog away fellow chiarians,blog away.
Lolo

moving Friday

2008-05-14T03:26:00.000-07:00

Well this Friday it is as far as the moving date. Thank you Michael for finally making up my mind. It got a little stressful Monday afternoon waiting for the phone to ring and all the right people to get back to us but everything did fall into place.Yesterday we recieved a VERY nice gift from our church~they are paying our first 2 &1/2 months rent. How cool is that?? There you go again God asking why do you worry Lolo you know I am going to provide for you. We went last night and bought a dining room table and some wicker patio furniture. We are going to have a nice size deck and I thought it maybe nice during recovery to sit out on the deck and enjoy some fresh air.
All the daycare darlings and their parents have just been so great working with us.Most things I do does effect's them in some way so here again I have been very blessed.
Most everyting is packed. There isn't to much left to do but move. I have certainly paid for the things I have been doing.My arms have really bothered me with pain and I have noticed that my hands have been swelling an awful lot and I don't know what that is all about.
My sister has been dealing me a fit. I am finding the closer we get to surgery the harder it is to talk to her.Why did God take our brother and not her (he has been gone 6 years).Why is God having me go through chiari and not her.Why why why.In her defense I think she is starting to go through "the change of life" but she is not helping me in any way with what I call her whining.I asked her if I am not freaking out about the surgery why is she. She wants all these answers that only God can answer. Some things,many things are black and white no grey areas.There is nothing I can say to settle her she just keeps on. Why is our dad going to Colorado to my surgery and isn't speaking to her. Even things like why did some of her friends NOT have a bbq on mother's day.I have offered many times for her to come to the surgery for her own peace of mind and even to possibly restore her relationship with our dad but she will even argue about that.I said I would even pay her way (she lives in GA) But NOTHING and I mean NOTHING will calm her. I have tryed telling her this is the kind of thing I don't need to deal with at this stage of the game but still she continues.I finally told her I was going through the chiari and not her because I am a hell of a lot stronger than she is. She didn't argue that point!! Any advice any one?? I just can't imagine being that worked up all the time.
Sierra is going to take off school Friday and help move.Her boyfriend Chuckie will be able to take off work and help too.Michael is off on Friday's so he and some of the guys at his work are meeting here at the house at 8 a.m. to start moving us.The daycare darlings and I will just do the best we can to stay out of the way.That should be interesting.
I need to call Dr.Oro's office in the next day or so to make sure he got the MRI report of my spine and the surgery release from my regular PCP.
I think that is all that is going on in my world right now.Jayme is doing better from the boyfriend trashing her truck and Josh is just work and play. Happy happy he is.
Love ya all

busy

2008-05-12T08:07:00.000-07:00

We are busy here. It looks like we may be moving this weekend now. I wish some one would make up my mind~ like my husband~
Saturday night I was able to go to the party with Michael. It was nice until the cell phone rang.
Jayme had an issue with her boyfriend. They got into a fight over who was cheating on who,she slapped him,he went outside with a knife and a hammer and according to the insurance company TOTALED her truck.So we were called away from the party to go to Jayme's rescue.When we got there the boyfriend was on his way to jail and he still sits there today.It was late when we finally got home Saturday night and we had Jayme in tow since she was mad at her mom for having the boyfriend arrested. She spent the night and the next thing you know she's gone but later calls and wants to move back in with us.Mind you we are moving into a 2 bedroom apartment any day now and I am having brain surgery in less than a month.I don't know where she thought we were going to put her but thankfully her mom said NO. Not that we wouldn't have her but this moving back and forth just isn't going to work and I am not feeling I am going to be in any position to babysit her.
Mother's day was nice. Michael ,Josh and Sierra went shopping and got me somethings I wanted for the apartment. A coffee pot,new pot's and pan's,canisters that kind of thing. We went to church,to lunch and than took a nap.
Today I have been packin,cleanin and watching the daycare darlings.We lost power for a little while this morning.Don't know why~ there were no storms or anything,however it came back on before any kids showed up so that's all that mattered to me.
I got a letter in the mail this weekend that our insurance company approved the surgery,something I had not even put any thought into so I am so thankful someone else did. I was actually excited when I read it.Just one less thing to worry about. Friday I saw my regular Dr. and he said I am good to go for the surgery. He said he was looking forward to doing my after care since I am his first chiari patient. He and Dr.Oro have spoken so I think everyting there is under control.
What kind of things do I need to take with me to the hospital? I'm sure for a while I will be in a lovely hospital gown. Will I be able to brush my teeth and stuff?

my a/c works

2008-05-08T08:02:00.000-07:00

The a/c works now! That cool air feels soo good. I was starting to question wether I thought we would end up paying any rent for the next few weeks we are here.
Going to my regular pcp tomorrow to go over the MRI result's as he see's them and for the pre-surgery physical and history~whatever that is.I am ready to get the show on the road. I am hoping the 8 hour drive to Colorado with my mom will be uneventful. She smokes ALOT so I am hoping Michael can deal with that and not get to fussy. My dad will be driving himself which is a good thing I think since he and mom have been divorced for like 38 years. They promise not to get ugly with each other. We will see if mom can keep her end of that deal. I think I am almost more worried about Michael than myself,after all I won't know what is really going on and Michael gets to deal with the 2 of them.
The little darlings are doing well. They have been so loud this week and all I keep thinking is that this can not happen once we are in the apartment and I go back to work.The girls are going to get their nails polished after nap time so that should be fun. I don't know how the parents would feel if I sent the boys home with their nails polished so I will do my best to explain to a couple of 16 month olds why Lolo can't paint their nails. That should be fun as well.
Not to much going on for the weekend. Michael and our kids are going to go to breakfast and shopping for Mother's day Saturday morning and Saturday night Michael's boss is having a party which I will try to go to for a while. I don't do well in the evening but this is important to my Michael so I am going to do the best I can.
Have a great pain free day,
Lolo

DDD

2008-05-06T12:37:00.000-07:00

It is still hot and we still have no working a/c.
My regular doctor's office called yesterday to say that the spinal MRI says degenerative disk disease in my lumbar spine.I will send the cd off to Dr.Oro Friday and see if he agree's and what if anything can or should be done about it.
I talked to my dad last night and he is still going to Colorado with me.He made reservations to stay at the same place we are staying.I guess we will do dinner Monday night and he will be there through surgery and see how things are going before he decide's when he'll head back home.He drive's over the road and doesn't get paid if he doesn't work so he doesn't plan on staying with me the entire time I am there.
I think today I started getting a bit nervous about the surgery.Maybe just everything in general~I'm not sure.At my appointment with Dr.Oro a few weeks ago I don't recall hearing him say..... you need surgery. Michael heard it loud and clear but I just am not remembering that part of our conversation.I find myself not really even thinking about it to much until today.I'm not freakin out or anything.I do have an upset stomach I assume it is nerves and if talking to the right person I could probably break down but so far not so much.I have always had to be the strong one,for mom,my kids,my sister and at times for Michael so I think I am feeling I need to be strong for every one now too. Plus part of me is thinking ~your not ganna die so what's the big deal~I don't know,maybe I am just cold hearted and won't get all weepy about it.I find that I have to put on so many faces,my fake happy face for the daycare darlings mommies when they come to get the kids,the strong face for my kids,the oh it's no big deal face for my grandparents and the I am not going to die face for my mom and my sister that I just get lost in those faces and feel like I don't have time to focus on my real feelings about what is coming up in less than a month.So I haven't -until today.
I think I'll have Michael send the little darlings home tonight and I will go to my room and just be alone for a bit. Normally I would just eat- I am an emontional eater but I am really trying to work on that cause I know any extra weight is not good for my back.
I also been thinking lately about my hair.I have really short hair-almost spikey like short so I am not freakin' about the back of my head being shaved and I am not concerned about going anywhere in public except church.We sit in the same spot every Sunday~5 pew's from the front.Michael thinks I need to wear a hat or scarf when we go to church so that those behind us will not be offended. I am not feeling like I need to cover my head up.Any suggestions anyone???
If ya all figure out where I am in this whole chiari thing please feel free to share.
Lolo

what a weekend

2008-05-05T03:09:00.000-07:00

Oh my gosh,what a weekend or rather what a late Thursday into Friday night we had.
I woke up about 2 Friday morning to go pee,I came back to lay down and the wind picked up and I thought it was going to take out our bedroom window.I have been through one tornado and wasn't ready for another.I woke Michael and he went to check things as the wind contiued.Sierra woke up at this point and she and I were sent downstairs to my room as the rain and hail came.About that time we lost power.The neighbor's tree was up rooted and we are talking a BIG tree here.We figured we weren't going back to sleep so we thought we'd be like strom chaser's.We went cruisin' around at 3 in the morning in a ugly strom.Lots of damage in our area.Our power remained off until about 7 Friday night and our basement flooded so no one went to school or work Friday.The garage sale also did not go.The wind and rain kept us from that.Saturday was a little better and we did sale somethings but there were just no people out. I'm sure because people were cleaning up after the strom.
Friday afternoon I went for the spinal MRI.It sucked.It took 40 minutes.My muscles were burning and I was near tears by the time it was over. Than to come home to no power,ugh!
Hopefully this week will be a little bit better.We have 19 day's til moving day and now after the strom and no working a/c we are really ready to go.We went and picked out new living room furniture,a dining room table,deck furniture and a new washer all will be delivered to the apartment which will be very nice and very helpful.Surgery is now less than a month away too. I am praying I will end up feeling better after surgery but am still concerned about the tethered cord. I realized this weekend the amount of things I can not do now since the chiari and it is upsetting. I made the decision that unless it is a must I should probably not drive.It's like I can't multi task anymore.Doing more than one thing at a time is starting to really confuse me. I'll keep ya all up to date as the week goes on.
Have a good one,
Lolo

chiari walk

2008-05-01T08:10:00.000-07:00

I know you may read this many times on other blogs or at conquer chiair's website.
There is going to be a BIG chiari walk in September in which conquer chiari is hoping to get all 50 states to do a walk the same day and raise money and awareness. I am hoping to be involved in some way providing I am recovering well from surgery.
I am going to get ahold of our state rep.( I go to church with him) and find out what needs to be done to get Missouri to recoginize September as Chiari awareness month.
Wish me luck,
Lolo

It's Thursday

2008-05-01T04:21:00.000-07:00

Well it's Thursday and I feel pretty blessed to of made it this far this week. I think my stomach issue is getting better.I thought that yesterday too and it hit again so we are praying it is over. I did finally eat real food yesterday.I also tryed to do a bit of shopping and did ok at first but became very weak and ended up having to leave target with out buying the things I had wanted.
The garage sale for not even really being "open" til tomorrow is doing GREAT.We have made about $30 bucks a night just being out in the garage every night trying to arrange things.
Tomorrow is the lumbar MRI.If they find that I do also have tethered cord how will this affect the decompersion surgey date I already have set up on June 3rd? I am a bit nervous about this!
It is a count down now til our move.I am so excited to be moving.Not having this place and the stairs to deal with is going to be so helpful!! Once all the garage sale stuff is gone we will load it back up with our personal things that will go with us.
Sierra is being sooo helpful.She surprise's me every day with her kindness and willingness to help. We are talking about a 17 year old girl here and the time she has been willing to give to me to help and make things easier on me is very touching. Thank you so much Sissy~
Our air is not working-Not a big deal to some but to me when it hits a certain temp, and with me having issues with controling my body temp. today could be uncomfortable.
I will be saying good-bye to some of my daycare darlings this month.Everything going on at once.2 of them I have had since they were 4 months old and are now in first grade so it could get a bit emotional here in the coming weeks.
I've gone on enough.Have a beautiful day.
Love to all,
Lolo

not feeling well ~ whining

2008-04-29T12:28:00.000-07:00

My stomach has been sooo upset the last couple of days.I have thrown up a couple of times but nothing else so I am not sure why this nasty tummy upset.I haven't read or heard any where that stomach aches have anything to do with chiari so I guess maybe some bug is going around.
Sierra has yet another UTI.She goes to the Dr. in about an hour.They seem to be getting worse.This time she has had blood in her urine.I really need to get her checked out for the tethered cord thing.This keeps me upset and does nothing for my stress level which in turn probably keeps my tummy upset.
I go Friday for the lumbar MRI that Dr.Oro has asked for.That should be fun.
Has any one gotten their money from Bush yet? We had planned to pay rent at our new apartment and use the rest if needed when we go back to Colorado however yesterday we found out that our truck needed $1000 worth of work so that needs to come first. Since I work at home we only have the one vehicle so there was no question it needed attention.
The garage sale is this weekend.I have some pretty good stuff for sale if I do say so myself.Last Saturday we sold $200 worth of stuff that we had out just trying to get ready for this weekend so that was a nice little bonus.
I think every one around here is good.Michael and I are actually a little testy with each other today.I am feeling like I want to take tomorrow off with this tummy thing,it has me really run down but his thinking is that I was already off a couple of days for my Colorado trip and am looking at being off a month after the surgery I need to suck it up and work.He didn't really put it like that but that's how I took it.
Sierra,as I said is on her way to the Dr. She and her boyfriends family went out of town this past weekend.It seems like they all had a really nice time.
Joshua does seem to be staying out of trouble.Thank you Lord for that.
Jayme is wanting to drop out of school and be home schooled so Michael had that issue to deal this weekend.She is living with her mom now and just seems to of stopped caring.I pray things work out.Being a teenager sucks.
Feel good all,
Lolo

so happy it is Friday

2008-04-25T03:24:00.000-07:00

I am so thankful today is the last day of the work week.Even though I had a short work week and fewer than normal kids I am beat!
We were going to move to our apartment on the 7th of June,however when we went to sign the lease we moved that date up one week to the 30th of May.Ealier this week we found out that I would be having surgery on the 3rd of June so we have yet again changed our moving date to the 23rd of May. This weekend is cleaning and preparing for the garage sale the following weekend.Than we will need to finish packing and move the following couple of weeks than off to surgery.I guess the good thing about being this busy is I won't have a lot of down time to dwell on the surgery huh?
I know Michael and my mom are going to Colorado with me.I had mentioned many blogs back that since the chiari I had been trying to restore my relationship with my dad.He freaked me out the other night by telling me he would be there with me through my surgery too.Keep in mind I have talked to my dad more this last month than I have in probably 3 or 4 years so this is BIG.There is little doubt in my mind now that the Lord certainly does know what he is doing.The restored relationships since my chiari have been unbelievable to say the least.
I have a question for those who may read this who have kids and have been where I am going.Do you just watch for signs in your kids? We know we have the chiari gene so are chances greater that our kids may end up having chiari as well? I think of Julie Carter and her girls so I was just wondering.My daughter does have the 2 dimples in her lower back and my son who is 20 now has struggled with lower back pain since he was 14.I think I will also talk to my PCP and see what he thinks.Dr.Oro is wanting me to have a pre-surgery history and physical done.What is that?I already have the appointment set up but don't know what to expect.
I pray you all have a great weekend and a pain free one at that,
Lolo

update

2008-04-23T10:11:00.000-07:00

Surgery is June 3rd.

my visit with Dr.Oro

2008-04-23T06:42:00.000-07:00

I saw Dr.Oro Monday.He is just the greatest.He already had all of my MRI films and some other test results so I didn't need to be sent for any further testing which was nice.He is just honest and to the point.I have chiari it is progressing and I should really consider having the decompression surgery.There is some concern of tethered cord which would change things a bit.I am having a lumbar MRI done here at home and will send him the results and go from there.
We were able to stay at the~Strawberry place~.It is a 4 plex and a nice one at that.Hopefully when surgery is scheduled we will be able to stay there again.It was close to everything.Lots of places to eat and shop.It has a full kicthen if you wanted to cook you could because it has everything you would need.Even a washer and dryer.It was nice to come home and not have a ton of laundry.
We found out yesterday that we can move to our apartment one week earlier than we had thought so that is great news.Things around here are coming along as far as cleaning,garage sale things and just packing.
This is my first day back to my little darlings this week since I went to the Dr.They are all so great.I got lots of love when they came in the door this morning.I have 3 less than on a normal day so coming off the Dr.appointment it is really nice.
Michael has been wonderful as always and ready to get on with the surgery and life.He is very strong and I am very thankful for that.
When we got home and let the family and friends know of the outcome of my visit with Dr.Oro everyone thought they needed to come to Coloardo with me for the surgery so I had to remind people this brain surgery we are going to not a party.
Hugs to all,
Lolo

just want to share

2008-04-14T03:07:00.000-07:00

I just wanted to share my Sunday morning with you.
We went to church just as we do every Sunday,we sang our songs and prayed and sang some more than came our time of "coming to the ALTAR to pray" where our pastor has use come forward and get on our knees and pray if we feel lead to.This day~ Laura and Michael Flaws were to come to the altar and the congergation "laid hands"on us and prayed for our upcoming trip and the outcome.I had people holding my hand,people with their hands on my arm,leg, back and my pastor with his hand on the back of my head.I've had people pray for me before but never anything like this.I was overwhelmed!I was on my kness and some one asked if I needed help getting up and I really did need help getting up.It was that moving to me.After church service we went upstairs to our small groups (Sunday school).I am in a big group that meets than breaks into a smaller womens group,Michael teaches the youth.I walked in to put my things down and get coffee and "Donna" a very wonderful lady handed me a check for-travel expenses-I tryed to give it back.These are not things I am used to.I always help the other person ya know.Any way she said she felt lead to give us $100.00.WOW!!Than before our small groups broke off "Paul" who put's some activities together for our group said he had an announcement-in May we are doing clean up at blah blah and in June we will be meeting at Mike and Laura's to move them to the apartment.At this point I was finally speechless.I was sooo overcome with emotion this day.I am so glad I didn't wear mascara.People never cease to amaze me.I think the hard part is to be the taker instead of being the giver.However seeing and feeling this goodness from others does make me continue to give when and where I can.
Just wanted to share.
Have a good Monday,
Lolo

leaving in less than a week

2008-04-13T03:31:00.000-07:00

Leaving in less than a week now to go see Dr.Oro.I don't think it has hit me yet.
I did hear Friday that Colorado had just gotten 13 inches of snow.I do pray that this is long gone before I get there.
S0,I got my hair cut,I got my nails done ~in purple~ and we found the suitcase.Does that mean we are well on our way??? Michael will take care of getting the oil changed before we set off on our adventure.I found my comforter I take with me on all our road trips so I can have that.The comforter- no one likes but me,however this comforter survived the tornado that got us a few years back.Our pop-up camper was parked beside the house and the comforter was in the camper after the tornado the camper of course was gone but I found my blanket across the way covered in mud hangin from a tree,so it is sorta special to me.It's a survivor just like we are.
We went through the entire downstairs of the house yesterday and have piles of trash,garage sale and take.We are slowly getting somewhere with this upcoming move.I've never had a garage sale before in my life but we are fixin to make up for that.This is ganna be a good one if I do say so myself.We have a liitle of everything.You need it~chances are you are ganna find it at lolo's garage sale!!
I talked to my dad last night,you may recall this relationship has been very rocky all my 38 years.We have been able to talk and get along since the "chiari".He and his wife are getting ready to leave on a mexican cruise for 8 days.I told him we could trade places,I could go on the cruise and he could go to Colorado~he wasn't up for that.Nice idea though huh?I am very excited about restoring this relationship but am limited in who I can share it with.My mother of course HATES him so she would feel betrayed and for many years my sister tryed with our dad but never got anywhere(I don't know why) so I don't want to hurt her and say -guess what I just talked to dad-ya know.Kinda sucks.I don't really know how to handle this one yet so far now it's between me, you and Michael.Of course unless Sis pops on this blog..Hey Sis I've been talkin too dad a little bit...
I think going to church will be the highliight of my day today.I have no other plans.I go weigh tomorrow so I will continue to watch what I eat.I haven't had trouble given up anything except my starbucks.That was a daily thing so I am sure to lose a few pounds.
Much love to you all,
Lolo

much the same as yesterday

2008-04-10T11:40:00.000-07:00

Feeling much the same as yesterday.I am surprised I think by the over all body weakness.I have known about the stairs being hard for me to go up which is one of the main reasons we are moving to the one level apartment,but just getting up from a seated position,or rasing my arms to pick up one of the little darlings is killer.I have had to have Michael open my medicine bottles lately because it hurts my hands so much.What's this all about?? The last couple of days have also been stressful 1) just cuz I am feeling so rotten and 2) because I am so concerned about Sierra.Michael and a couple of other people I trust having been where I am think- I should take care of me and going to see Dr.Oro and than try to figure out little Sierra's deal.As a mother that is much easier said than done.However I am going to try to just focus right now on my up coming appointment.I am not sleepin either~probably nerves.
On a more positive note I am doing ok so far this week with the weight watchers.I am down 4 pounds in just a few days so that's cool.
I think we are going to work on things for the garage sale this weekend.I am praying for a quiet weekend.I look forward to staying in as much as possible.
Have a good eveing everyone.
Lolo

feeling like crap

2008-04-09T12:42:00.000-07:00

Oh my gosh,Am I ever ready to call it a day. I started feeling really rough yesterday with lots of joint pain so much so that it was very hard to use my hands.Michael was kind enough to send me to bed when he got home.He sent the rest of the daycare darlings off and stayed up and played with Rowan.Thank goodness. Rowan slept very well so we weren't up in the night or anything. Today I still have all the joint pain and all over body weakness.My legs are very weak feeling.It just seems it takes everything I have to walk across the room or disipline the darlings.Lots of tension in my neck and a nice headache.
I talked to Sierra just a little bit last night about being concerned about her butt dimples.She didn't do or say or act as I was afraid she would.She was almost uninterested.I told her there was really nothing we could do right now I wanted to talk with Dr.Oro so he could lead me in the right direction.She seemed just fine with that.
Just wanted to whine a bit and let ya know how Sierra is doing.
Have a great night,
Lolo

Sierra

2008-04-08T07:45:00.000-07:00

So Sierra has these 2 dimples on her lower back on either side of her spine.She has had them for as long as I can remember and she is a hairy little thing ~ so as I am still learning about my chiari I am concerned about Sierra and possible tethered cord.She also seems to have UTI's often.So how do I go about first telling her about my concerns and than finding someone to have a look at her? Is tethered cord as "rare"as chiari is? I go to Dr.Oro on the 21st for my chiari I guess I will ask him what he thinks about her and her little ~butt dimples~ as Lace says.
I had one of the worst chiari headaches yesterday I have ever had.It was off the scale.I ended up having the daycare darlings just kinda do their own thing downstairs while I layed there with an ice pack on the side of my face.It was awful.Thank God it finally did let up cause I was having Michael come home from work.Today so far is not so bad.I can't tell if I think the ultram is doing anything or not.I do think the cymbalta is helping with nerve pain and anxiety.
Rowan~one of my little darlings is going to spend the night with me tonight and Saturday night Jayde~another of my little darlings is going to spend the night so I think I have my work and my week laid out for me.It is pretty great when you can build good relationships so much so that mom and dad feel good about asking the babysitter to keep baby overnight.We used to have someone with us every weekend until chiari became my life.Now it is a little harder on me.
I joined weight watchers last night.I feel pretty good about it so we will see what happens.
I am going to rest while all my little darlings are resting.
I pray you all are pain free,
Lolo

the weekend

2008-04-07T04:00:00.000-07:00

Well the Jayhawks did it!!!
The weekend was good.Friday I did the Dr.appointment thing.I found out that I have asthma.Does asthma and chiari have anything to do with each other? We decided to get off the vicodin and try ultrim.We are staying on the cymbalta and xanax.All in all the apointment was good.My breathing had increased 33% since I was there 3 weeks ago so that is a good thing.
The apartment is great and will work out just fine.We went and picked out living room furniture and a new dining room set.Sierra is fine with what will be her space~her room and bathroom so I'm happy there was no fussin there.We have been offered an awful lot of help when we move so hopefully it will all go well.My mom and I will supervise.
I am going to join weight watchers tonight.Not being able to be as active as I once was is starting to show and I feel a bit uncomfortable so we will see how ww will work for me.
We let ~boots~one of our kitty's go to live with my mother-in-law so now I need to find a home for our other kitty~silver~.I am not really a kitty person so I have a hard time paying a $400.00 deposit and an additional $200.00 in rent for them.
Did anyone watch the re-airing of Extreme makeover home addition last night?It was about Julie Carter and her 3 daughters with chiari.I watched it again and I cryed through the whole thing.I e-mailed Julie when the show was over and she is still very overwhelmed with the e-mails,letters and phone calls.She said she has showed the house to over 1,000 people.WOW!
Well I ned to get this day started.
Bless you all,
Lolo

we're ready

2008-04-04T05:45:00.000-07:00

The apartment is ours and we are ready to go.Michael just left to take the first load of tools and such to store in his brother's garage.We are going over tomorrow to go in the apartment and look around to see where we will want to place things and such.Than we will be off to buy new dining room and living room furniture.
The move in date is not til the first of June but with a garage sale and my trip to see Dr.Oro in there,there really isn't all that much time.
I go to the doctor here in a bit to discuss how my meds are working.I'd love for him to have something other than vicodin for the pain.I don't know that there is to much else that is stronger than vicodin but I feel like my body is just to used to it for it to work well any more so I take more than I'm sure I should.All this extra stuff I've been doing to ready us for the move~my body is aching~My hands or fingers hurt so much it is hard for me to straighten my hand out.Even my legs and rear end hurt.I'm still trying to get used to the fact that I "can't do- like I used to".
Have a good weekend all.
GO JAYHAWKS!!!
Lolo

our apartment

2008-04-02T03:07:00.000-07:00

We put money down to hold the apartment we want last night.Please pray all will work out if it is ment to be.
We are very excited but a bit nervous as well.I have been taking things off the walls and going through other things to get ready for a garage sale and other things ready for the dump.It is CRAZY the things we gather after being in one place for nearly 10 years.The darling little babies that I was sooo hoping would follow are in fact going to follow.I am really moving out of the way so I am extending my hours a bit to help the parents.Everything just seems to be working out and happening just as it should.I want to jump from the roof top but I am one of those that don't fully believe til it is all said and done.Beside's I am not sure how much I'd really enjoy the apartment at first if I were to do something so dumb!!
I have mentally been in a really decent mood this week however,I feel crippled because of all the extra work I've been doing.My hands and back or by far the worst right now.
Every one here is good.Michael is just his happy go lucky self.Really looking forward to no more yard work(there is a lot of land with this house).He is really looking forward to cleaning out the garage and "handing down"some of his tools to Josh.Josh is working alot.He had 74 hours on his last paycheck so he would probably like some sleep.He is a good kid(well is 20 still a kid?)Sissy is my baby and doing good too.She is a bit upset that we are moving a little further out than she would like(this will require she get up a bit earlier to get to school)but for the most part she just goes with the follow and doesn't give me any trouble.Chuckie(her boyfriend)is having an outpatient surgery done today for kidney stones.I thought he was awfully young to be dealing with such a thing but he has been for a while.I haven't seen or talked to Jayme(step daughter)since Easter so I hope all is well in her world.
I will keep you all posted on the apartment and move.It is funny that we are so happy to be downsizing by ALOT.Most of our friends are wanting MORE space.
Have a pain free day,
lolo

still raining

2008-03-31T03:15:00.000-07:00

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 Dr.Oro.so 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.
Lolo

It's gonna rain

2008-03-28T14:19:00.000-07:00

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,
Lolo

conquer chiari

2008-03-25T03:29:00.000-07:00

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.
Lolo

happy easter

2008-03-23T19:16:00.000-07:00

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!!

Rick's new book

2008-03-20T11:32:00.000-07:00

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.
Lolo

TETHERED CORD

2008-03-19T11:33:00.000-07:00

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!!
Lolo