blessed for today

here is an update on what is happening in the crown fam.  one thing i can promise this will not be spell checked and may sound funny.  i am on lots of meds and my head is a mess.  but so many have been praying and i wanted you to know what was going on.  it has been a crazy few days and some of the scariest days of my life.  saturday was a wonderful day.  i did not feel the greatest, but got ready and my mom drove the kids and i to our sweet danica's b-day party at the park.  it was such a joy to be out in the fresh air and see friends.  by the time my body hit the bed that night, i was wiped out.  i had notice that my pain pills were getting low.  i decided to start weening myself back on them.  i figured i could push through the little bit of extra pain, and it was time for me to move forward.

sunday morning i woke up feeling kinda off.  by the evening i was feeling horrible.  i literally could barely move.  i was sweating, and every time i stood up my head would spin.  i felt like i was going to faint.  i felt ill, and it hurt to even open my mouth to talk.  i called my mom and asked her to come over.  i was pretty scared.  i actually laid in bed just praying in my head because i was convinced it was something bad. we decided i needed to go to the er.  now this is complicated because the hospitals in canton really know nothing about eds or my pots.  i was pretty sure i was having blood pressure problems and my pots was acting up.  the summa er in green has a few docs who know a little about eds, so my mom took me there.  by the time we got there i was not doing good.  my blood pressure was pretty high.  they ran tests and did a ct of my head.  they ran an iv and started me on fluids.  they gave my some diuladid(sp) since my pain meds were not working. i actually began to feel worse.  the doc came in and told me i needed to be seen by a spine doc because one of the screws in my neck was laying on a major artery in my spine.  she suggested city hospital.  unfortunately i did not feel comfortable going there since the er docs here did not even know what pots was.  she then said she could send me to cincy to see dr durrani.  i told her i was going for a check up on thursday.  she said "no i do not think you understand...you have to go now.  this is very serious.  i do not even want you to move."  i called tim at work and told him my mom and i were headed to cincy in an ambulance.  i remember laying there thinking that this may be it.  i told my mom if i did not make it on the ride down to please be patient with tim.  this would be so much for him to handle.  i told her how important it was for him and the kids to be together through this.  she agreed, and we both let the tears fall quietly.

the drivers for the ambulance came.  they were amazing and so kind!  the one who rode in back with me told me he was very concerned about my pain.  he worked diligently on the way down to get my pain under control with morphine.  he told me he was concerned with my blood pressure and that it was in stroke range.  God was with us on the drive down!  it was a horrible, painful ride, but we made it!  once in cincy we waited for durrani.  God love this man!  he came in looked at my ct and put my mind at ease!!!  thankfully the doc here did not understand what she was looking at.  my screw is very close to my major artery, but not touching.  it has to be this way because of how the artery runs through my spine.  but God gave durrani a gift of being able to put a screw dangerously close to my artery with out touching it!  durrani told me right away it was pots.  when i tried to wean myself off of the pain meds, i caused adrenaline surges in my body which caused my blood pressure to rise.  this led to all my symptoms.  he wanted to keep me in the hospital to control my pain and my blood pressure.  they began hydrating me and put me on a morphine pump.  they also gave me another pain med. this was the first time since surgery i was out of pain.  Thank the Lord!!!  i began to feel some what better.  by monday evening i was feeling worse again.  they ran more tests on tuesday.  all came back mostly normal.  because my vertigo and dizziness was gone, durrani let me come home yesterday.

i was given strict instructions to rest and to take my meds in the right way.  i am also supposed to get in to a heart doc who understands pots as soon as possible.  this is a tall order since there are not many of these around.  i also need a followup with a geneticist to get a true pots diagnosis.  right now i am listed as possibly having it.  i have to work on getting this under control.  to be honest i feel completely overwhelmed.  not only do i need to stay on top of my medical issues but my kids.  poor tim is exhausted from over time.  he is working so hard to pull us out of the financial hole we are in.  i looked at him tonight and wanted to cry.  his eyes tell the story of a man who is desperately trying to save his family.  my dear friend monica came a blessed me with a visit today.  we sat on my uncomfortable futon, comforting each other, and dreaming of a brighter future.  i am so blessed by your prayers, meals, and generous words!  please know they encourage me and bring me hope.  God is so good and he continues to pull us through.  i am blessed today!

Just a Little Update

Well it is over!  The surgery is done!  Almost a week after, and I finally feel well enough to sit up and write.  Even though I have a tiny bit of strength, my head is spinning.  I truly did think...."Ah I will not need that many weeks to rest and heal!  I will just push through it!"  The cold hard truth...this is brutal!  But on the other hand...so thankful I had it done!

To start out, Tim and I had a nice drive down to Cincy last Sunday!  I can't even remember when we had spent that much time with each other without kiddos. :)  We talked about old, new, and future dreams.  We shared french fries, he laughed at many of my silly quirks, and of course I pointed out ever state trooper on the highway. (even though he was not speeding...they make me nervous!)  We held hands and he comforted me, he knew I was scared.  The hotel was peaceful and bed time early!  It was so nice to sleep!!  If you are not a parent of young kids...no comment!

Monday we arrived right on time, and everything went fairly smooth.  I had to tell my story a million times, and all the docs and nurses marched through.  My parents, Tim, and my brother came to wish me love and wait.  They gave me some meds to help with nausea and valium.  That was the last thing I remember!  I do not remembering operating room or recovery.  I was out.  I woke up with a start in my hospital room, asking when surgery was.  I thought I had just dozed off.  But it was done and successful.  We settled in for a few days in the hospital.  Now I had been told the hospital was nice, but good grief!!!  It was like staying at a very nice hotel!  The rooms are huge, and super clean!  Everyone was amazing!!  My one nurse Jacquie won the award for best nurse I had ever had!  In fact, Tim thought I made a new BFF. I also loved my OT and PT ladies!  It was so fun to chat with them!  They treated me with respect, and knew what was wrong!  Refreshing to have people hear you and actually accept and understand your diagnosis!

I hit a few little road bumps.  I developed what looked like a really bad sunburn all over neck, face, chest, and upper arms.  Once I quit taking the morphine it went away.  I also had a couple infections, but they gave me several doses of IV antibiotic, and they are better.  We were able to leave on Thursday, and the ride was amazing!  Very smooth and felt pretty good afterwards.  The past couple of days have been harder.  I think I have tried to push myself too much here at home.  Have lots of trouble with vertigo, and also pain.  The steroids I believe are making me super hot and flushed.  I also am stopping the muscle relaxer because it is making all my other joints pop out of socket.  My biggest thing is I need to rest!!! I am yelling this at myself right now!  :)  If you would pray for me on this!  I want to hurry and feel better...I want my kiddos to be snuggled up with me again!  Once again I am working on patience!

Thank you so much to all who have helped!!!!  I can't even begin to name everyone!  But thank you for meals, staying over night with me, visiting me in hospital, visiting me at home, cleaning my house, keeping my kids, helping with so many things, and endless prayers!!! You are amazing, and we are blessed!!! Thanks again for everything, and I am fairly certain this has many typos as I am heavily medicated!  So no gross pics of incision...but here is one of my poor IV arm. :(

My Snuggle Bugs

Tonight is my last night with my kiddos for a while.  My heart is broken!  I know it sounds silly but my heart is only complete with my kiddos close to me.  I have 2 of my bugs snuggled in next to me.  Brooke and Chan have both found a comfy spot in my bed, and I am eating up all the extra snuggle time with them.  I have to say the most difficult part of going tomorrow is leaving them here.  And yet, they are my greatest motivation for going and taking the time to heal properly.  I know how much they need me to heal, and how much I need to get back to them.

I was telling a friend the other day that one of the hardest realizations to come to is knowing that you are the only person(excluding hubby) who loves your child unconditionally.  I know that friends and family care a great deal for them, but that unconditional love is something only hubby and I can give.  I think of my sweet Aidan and worry about how he will handle all of this.  He takes things to heart, and sometimes becomes emotional over small things.  I love him for this!  I love his sweetness towards me, and the ways he tries to help around the house.  I love how he cares so deeply for others, and wants to speak up over injustices.

My feisty Brooke can make many turn their heads and wonder who her mother is!  And yet I love her spunk and complete love for life!  She can speak her mind, and still be loving to the core.  Brooke thrives on routine, and loves to know she is being cared for.  She loves snuggles and also loves her alone time.  If she is angry, she wants nothing more then to be left alone.  Brooke is not one you reason with or even coax into being happy.  She loves to march to her very own drum!

My ultimate snuggle bug is my Chan Man.  He is the one I am most worried about leaving.  I know the other kiddos understand where I am going, and will be busy playing and making memories.  Dear Chandler has hardly left my side.  He has not stayed away from me much at all.  Even when Brooke had her surgeries, I took him.  He sleeps with me every night!  I am so scared he will miss his mama, and I will miss him!

With all this said....I know they will be fine.  God loves them even more than me, He has their future in His hands!  I am so thankful to have that peace.  And I have to say Tim and I are looking forward to some time away!  Funny that most of our friends take cruises or fun beach vacations.  Not us!  We are headed to Cincy to stay a few days in the hospital!  We are excited though for a whole car ride to talk, a night away in a hotel, and just being there with each other.  The little things make it all special!

One Week and Counting

One week away!!!  Hopefully next week at this time I will be in a hospital bed healing from surgery.  I have to say the anticipation is killing me!!!!  I just want it to be done!  I want to know if it is going to help.  Will I be able to get rid of these sickening headaches that make it almost impossible to function?  Will my neck and the back of my head finally be able to support the rest of my head?  Will the rest of my symptoms settle down, or will the spiral out of control?  Honestly I just want to know.  I want to know the hand I have been dealt.  This past week has been a mix of the good and the bad.  I have had moments where I felt great!  I zipped through organizing closets and teaching kiddos.  I made pillows and a hide out for the boys room, and started working to re-decorate Brooke's room(she wants to decorate with ladybugs!).  Then I have crashed!  Surviving days on only 2 and 3 hours of sleep because the nights are so painful, and days not much better.  Today being one of those days!
I was up until 5:30 AM and then slept until 8.  Barely able to move I got ready for the day.  It is amazing to me on days like this how hard it is to even comb my hair.  Just standing in front of the mirror takes concentration as my legs feel as if they will buckle and my wrists hurt so bad even a comb is to heavy.  Yet somehow I manage to make it... only by His grace.  Aidan had an OT evaluation today.  I did not want to cancel since we have been on a waiting list since June.  I begged the kids to be super good for mama because I seriously felt like I would throw up at any moment.  I held my head while the OT talked to me.  Just wishing I was in bed.  She took Aidan out of the room for a few minutes to do a test.  My phone rang and it was my mom!  She was in Belden and wanted to know if she could help me.  Praise God!!  She came over and helped me get the kids together to leave.  Then she offered to take them to her house!!  I am so blessed to have her for my mom!
I got home, and rested for a couple hours before my meeting with a lady who is going to help me try and save our house.  A sweet friend told me about this lady and the Restoring the Dream program.  We had thought about applying for it a while ago, but the bank urged us to work with them.  So we did.  Unfortunately that did not end up working, so here we are back to this program.  I gathered all the paperwork I needed and went to appointment.  She was wonderful and is pretty confident that we will qualify.  Of course there are no guarantees, but there is Hope.  She feels we are in good shape for qualifying since we had both unemployment and medical debt setting us back.  She was worried we would not qualify for the medical part because you have to be in debt at least 10% of your income.  All I had to do was show her one bill from Brooke's surgery and we were taken way over the 10%.  So that bill not only saved our daughter but possibly our house too!  Still do not like seeing that large sum next to the word owe!
As I count down the days, I am relishing in every moment with my kiddos, hanging out with friends, and trying to play normal for the week.  Still in awe of how He works through others to bring us hope, comfort, and a better understanding of who He is!

No More Darkness, Resting in the Light

I have said many times before that I feel as if I live in the middle of Chaos.  I do not want to, I do not try to, for some reason though chaos finds me.  To be bluntly honest...I am sick of it.  I try very hard not to be the person who says "Why Me?"  But honestly, some days, I am.  It makes me sad because I know there is much suffering in this world, and mine is a very small piece of that.  But the reality is I am human, and I hit bottom.  I cry out for relief.  Is this really so wrong?  Is it wrong to wonder how much more a family can take before they snap?  I am going to explain a few things in this blog post that may cause some to judge me.   Not that I have any desire to be judge, but I feel it is important to be open.  I guess I feel that someone might read this and realize they are not alone.

I have talked about our financial struggles and our home before.  It is no secret we have had a hard time holding on to this house.  Between job loss last summer, then moving, then job loss again, then moving back, and add into that numerous medical visits and surgeries, we have exhausted all resources.  We have had so many help to keep us under this roof.  I spent 4 1/2 months filling out paperwork back and forth between us and the bank in the spring.  I have talked to one person after another, and then we found out that all was fine.  We qualified for a program to retain our home!  Blessings!!  We have been resting in that for a few months now.  It has allowed me to focus in on my medical issues.  Last week I received a letter stating we did not qualify for the retention program.  I figured no big deal...must be a mistake.  I called only to find out there was no mistake.  The program we were told we qualified for was now unavailable to us.  It seems to be due to an error on their part, but that is really beside the point.  The plain truth is we need a new solution.  We can possibly re-apply.  We can possibly seek funds from state funds that were set aside for this.  No matter what it is more paperwork, more hoops, and honestly I am wiped out!  Even if we do figure this all out, we still have a wall caving in in our basement, and a huge amount of stairs to come into the house.  The stairs are very difficult for me now.

We have not made any decisions.  We are waiting until after surgery to decide what to do next.  Tim and I both agree we must stick together and support each other and the kids through this.  After hearing this news I was devastated.  How could I be asked to leave my home again?  Where had we gone so wrong?  How can you handle money better when there is no money to handle?  I need to be working.  I need to contribute to our finances.  I have always worked at least part time.  I quit my job when we moved because that job by far compensated for my job.  But sadly it only lasted 4 months.  Since we have been home I have been too sick to work.  I feel terrible guilt over this.

I look at this mountain in front of me and think, "Do I even have the strength left to climb it?"  In my head I hear things like, "You committed to purchasing this home.", "You can't walk away.", "you have to fight."  And I want to, just not sure how.  I think about the urologist, neurologist, and cardiologist Brooke needs to see.  Plus she is still complaining of eyes hurting and that is another doc.  Aidan needs an MRI and CT that can only be performed in Cincy.  Chan has an MRI scheduled.  We have school, church, awana, and 4-H.  Ranger has an ear infection again.  Tim got sick the other night because we slacked on eating healthy because I was sick over the weekend.  So I have to up my game on the meals he can eat.  Thank God for a friend who is helping keep up with house.  I need to make sure all is well with Amy and see her before surgery.  I feel bad...I do not see her enough.  I need to get the kids to see Tim's Grandpa before the surgery.  Plus just normal stuff around the house.  Poor Tim tries to help but works long hours.  I listen to myself make list after list.  I think why, how?  But then....

On Sunday I was reminded that God is the light that consumes the darkness.  Why am I sitting in the darkness?  There is no purpose in the darkness.  I can never find peace, acceptance or understanding in the darkness. I can not truly be happy in darkness.  And I will continue to ask why if I remain in the darkness.  I do not know how things will turn out, or if we will stay here or move on.  But where ever my family is, I want to rest in the Light.  I want to find my strength and comfort there.  My family needs to be in the Light together.  Today I was listening to this song in the van.  It is one of my favs by Shonlock.  Never odd or even, His Miracles are countless!  And my family is truly blessed right where we are!

Counting the Days

Sitting in church this morning, I realized how utterly important it is to be close to God.  No this is not a new revelation for me, but a reminder.  I pray everyday, and most days find myself chatting away to God.  But so often I forget to stop and listen.  And one thing I have a hard time with is surrendering my will to His.  Not that I do not trust His plan, or even dislike it...I just feel powerless when I do not feel in control.  My life teaches me more everyday that I simply can't control my life.  I am powerless, even when I try desperately to cling to that power.  In the end, God always shows up and taps (knocks) some sense into me.  Today I needed that as I prepare for this upcoming surgery.

22 more days...that is all!!!  On September 24th I will have surgery in Cincinnati to fuse my c1 and c2 spine. I can actually say...I am hopeful!  The idea of being able to hold my head up and my head not pounding is a wonderful thought!  I also know this is a rough surgery with a 6 to 8 week recovery time.  I am very nervous that my house will become a toxic dump, my children will form at least 2 cavities, and I will lose my mind from being cooped up.  These are all things out of my control, so I am starting to breathe deep now to prepare myself.

I went to my doc last week.  She was concerned with my breathing issues.  I am very short of breath.  She wanted a few things checked to make sure all is ok.  On Thursday I went for a CT scan of my chest.  All looks normal, except for a soft tissue mass on my spine.  Praying it is something that Dr Durrani can address, so I will talk with him next time I go.  I have a pulmonary function test scheduled for this Friday.  I leave Thursday morning to drive (no worries, my mom is driving!) to Cincy for my pre op tests.  I am going to try to squeeze Aidan's flexion/extension MRI and 3d CT in while we are down there.  We have to do it all in one day because I have to be back for my Friday morning appointment. :(  It will definitely be a very long day.  Please pray for my mom, as she is very worn out!  She is such a blessing to me, but I know that she is also hurting.

I have a few specific prayer requests.  I am never good at asking for help.  In fact, I will pretty much do something unless someone tells me not to.  Although lately, I have let things slide because my body can not physically do it.  Thankfully a dear friend is coming once a week to help me with the cleaning tasks I am unable to do!  It is wonderful because I can rest easy knowing my floors are clean, and my bathroom does not stink.  Going into this surgery I know I will need help afterwards.  So many have been kind to offer to help.  I wanted to post a few things that I will need assistance with.  If you feel led to help, please let me know.  Again I am humbled by all who have helped and prayed in the past.  We are so blessed to have such amazing family and friends.  God is Good!

1. Food:  My amazing friend Monica has set up a Take Them a Meal page for us.  Plus some other friends have made some freezer meals for us.  If you would like to sign up on Take Them a Meal...that would be amazing.  Just follow this link: http://www.takethemameal.com/  Last Name: Crown  Password: PRAY

2. Helping with Kids:  Tim will be off for the first week.  And my mom will be around to help also.  But I know the kids will be itching for some play date time.  I am creating a schedule of when Tim and my mom will be available.  If you are interested in helping with this, please private message me.  I can check times with you.  Please no one take this the wrong way...but I am very protective of Brooke (of course I am of all my children, but hers due to health issues).  She has several special needs and I am open to talking about them, just not here.

3. Various Household Things:  I do have someone who helps once a week, and another friend who tries to come 1 to 2 times per month.  But with me in bed, I am sure we will need help with this.  Tim is a help, but works soooo many hours.  I want his time to mostly be kid focused since they will not have their mama in the same capacity.  So we need help with stuff like laundry, ironing, dishes...I know sounds super exciting, right!?  Do not everyone volunteer at once! ;)

4. Errands:  Hopefully there will not be many of these.  I am trying to stock up.  But I know something will come up.  My main shopping places are Raisin Rack, Giant Eagle, and Target.

5. Travel Needs:  I hate posting this one, but I am trying to be open and honest.  All of these doc appointments and surgeries are straining us financially.  After 2 job losses in the past year, we are just playing catch up.  Any extra overtime is paying medical bills and prescriptions.  I hate talking about this kind of stuff because comparatively speaking we are ok.  We have a house, food, vehicles.  Please know my heart, I know we are blessed!  Still some days are kind of scary when I realize how many trips to Cincy we have coming up, plus numerous surgeries, and trips to other docs in other states.  With that said, if anyone feels called to help us with expenses that would be amazing!!!  We will need a hotel in Cincy, plus gas back and forth, and food.  We tend to mostly eat at subway as it does not bother Tim or the kids as much as other fast foods.  Anything is a blessing!

6. Prayers!!!!  We know the power of prayer!  We know God has this!  Just knowing you are praying, makes me smile.  I feel a little less stressed and can remember that we are treasured!

Thank you all!!!

A Day in the Life...

Most of you know I tend to live just on this side of crazy.  I have been trying to live a little closer to sane, but it never goes well for me.  Mom tries to convince me it is in my genes.  And knowing her family, she is probably right.  We are one of those families who believes you can pack at least 40 hours of stuff into a 24 hour day.  And truth be told, I used to be able to manage that.  I would never stop, during commercials I would jump up to wash dishes, and while watching tv...fold laundry.  It just made sense to me.  I kept a notebook on my bedside table to write lists for the next day.  Over the past few months I have slowly slowed down.  But these past few days have reminded me how crazy my life used to be!  It all began when...

Tim came home from work the other day with a donut on his car because his tire blew out.  Of course me being the wonderful wife I am, I offered to take it to Walmart in Massillon.  Chan and I headed out.  On the way, I encountered a lovely man driving his truck.  (not really lovely!)  He was irate over how I did not pass a garbage truck but instead waited for the oncoming semi to pass first.  Silly Girl Driver!  He proceeded to pull up next to me and yell horrible things at me.  At a stop light, he continued his screaming.  He then drove next to me and we landed at another stop light, where he proceeded to yell.  After that light he took off.  I have to say I was a bit upset! I have never experienced Road Rage like that.  I just prayed for him, because obviously his day was way worse than mine.

We arrived at Walmart to find they did not have my tires.  But they found out that Tusc Walmart did.  So I drove over.  After waiting an hour they called me back to tell me they did not have a machine to get my tire off of the rim, but the good news was Massillon did!  AAAHHH!  They told me I could buy the tires and drive back to Massillon but they would be closed tonight.  I had Chan, and Tim's car is tiny. I declined and left.

Thursday was busy because both dogs were going to the groomers, and we had a home school co-op picnic at our house.  Then I had to pick up dogs, get them home and go to a doc appointment.  So no time for tires.  The good news was I managed to pull almost everything off even though I felt really crummy.  I had just dropped off dogs and was heading to doctor office.  I saw that I was going to be 10 minutes late, so I called them.  Sadly they were not ok with this, and made me reschedule.  I cried all the way home because I really needed to go.

Friday morning started out early.  I headed out to get this tire!  I put Chan in Tim's car, threw my purse on the front seat and locked the door.  I walked around to the driver door...ugh I locked the baby and keys in the car!!!I tried to get Chan to open door.  No luck!  Called the Sheriff and they sent the fire department.  Apparently it was a slow day because they sent an ambulance, a large fire engine, and the chief.  Good thing because Tim's car is very hard to break into.  They tried everything, and finally told me they needed to break a window.  I panicked as I thought of Tim seeing the broken window.  Then one suggested using a wire coat hanger which I just happened to have.  Voila, it worked and my baby was free!  But the poor little guy had worked himself up so much he threw up!  He was super excited to see the engine and all the fire men though!

After this ordeal we headed out again to get the tire.  And Success!  We were supposed to meet my dear friend Jen.  Poor Chan was kinda worn out, so he went with grandma. I took the older one's to meet Jen for ice cream.  We then decided to check out the Jackson Bog.  We had not been there before and did not realize you hiked into the bog.  I love hiking!  But when my right leg does not work very well, not the best idea.  Oh and not to mention we had flip flops on, no water and it was 90 degrees!  So the bog was super cool but I had to drag my leg back.  :)  Afterwards we picked up my mom and headed back to my house to make goodies for my mom's church festival.  My mom's oven broke and she needed to borrow mine.  Plus the kids wanted to cover pretzels with chocolate.  Several hours later I literally crawled into bed.

Today started off fairly normal with no big plans, except a trip to the grocery.  My mom calls me and asks if I have seen her car keys. (yes this does run in my family!  It truly is an illness!)  I told her no, but I would check my van.  While searching my van, I did find her house keys but no van keys.  She was frantic because she needed to get up to the church to help set up for festival and she had errands to run.  I told her I would come and get her.  So the kids and I piled in the van.  We helped set up at the church, and then took my mom to run her errands.  I was on my way to drop my mom off.  Tim calls me...frantic.  His car was overheating and he needed to get to work.  He pulled off the highway at an auto zone in Canton.  My mom has AAA.  So we drove straight there.  We took car seats out of van, and into car.  Mom called the tow truck and I assured Tim he was not abandoning us.  While AAA was on the way, I called my Julie!  Of course she would come rescue us from the Auto Zone parking lot! While we waited for the car to get loaded, Chan and Brooke took in all that was happening.  I sent the car to a friends house to be repaired.  I could not get a hold of them, so I am still praying they do not mind it came there and will not be completely furious with me.  Julie came and brought us home and my dad came to get my mom.  My mom went home and called AAA to come unlock her van in hopes her keys might be locked in.  We have plans to go to the grocery and festival tomorrow.  And that is a day in the life of me....