Wow! it's been a while

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

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

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

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

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

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

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

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!!!!!!!!

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!!!

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

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

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

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

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

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

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