Friends, Coffee...and Sometimes Tea

Growing up I always wanted a best friend.  I wanted that friend who lived next door and we could talk to each other through our windows.  The friend who would lay awake all night with you to chat about life, boys, and parents.  The friend who knew every single detail about you and still loved you.  A friend you graduated primary school with, then high school, and finally college.  The friend who was your maid of honor and there when all your kids were born.  This was not a reality for me.  Many times I have been sad about this.  We moved a lot growing up.  Not only from town to town but state to state.  Facebook has allowed me to keep in touch with a few high school friends.  But for the most part my closest friends now I met in college or since I have had kids.  Right before my surgery I longed for that life long friend.  I needed a person who would visit me in my pain.  Someone who would not judge and lift me up when I fell.  Someone who would give encouragement.  In my tiny mind, I guess I felt one person needed to fill all those rolls.  But God showed me different, as He does so many times!

My sister, Cassandra, became one of my sleepover buddies.  She spent many nights on my futon.  We would watch netflix and talk.  We have always had the "older/younger" sister relationship.  But for the first time, I felt so close to her.  I loved listening to her talk about her plans for the future.  I loved having her hear, close. My kids loved have sleepovers with their aunt.  Right alongside her was my sis-in-law and brother.  They live in Cincy, so they brought me home cooked yummies for dinner.  They brought my niece and nephew up to the hospital.  What a blessing to have little life around me!  And of course my parents and hubby endlessly provided and still do!  My dear Joyce (who the kiddos call Auntie Joyce) has been in my life almost as long as my parents.  She is the one who I rely on when I can't have my mom.  Even though we do not see each other much, she lets me know her love is always there.

It was also a beautiful gift to have 3 women who had been in my shoes as friends.  Kathy had proceeded me in the same surgery with the same doctor only a month before.  And guess how we met?  MOPS, several years ago.  It was when I was on the steering team, and she was a new mom.  She was in my discussion group, and we connected.  Who knew at that time we were both suffering in the same way!? Then while in the hospital I quickly became friends with Jennifer.  She also had the same surgery and lives in cincy.  She answered so many questions for me, and just reminded me how important it was to take it slow.  She was a breath of fresh air, and a great inspiration.  And of course my dear Monica!  She often tells me we were knit from the same cloth.  I do believe she is right.  Even though we have only been friends 2 years, it seems a lifetime.  We think and act almost in the same way.  We share so many of the same dreams, and see the world through the same glasses.  She inspires me daily to never give up my walk with Christ.  To cling to Him even in the darkest moments.

There were so many ladies who have been a blessing in one way or another.  Some other ladies I met through MOPS cooked meals and snacks for my freezer!  You would not believe the amount of food they made.  Beyond that we had endless meals from friends and strangers.  One meal that was brought moved me completely.  It was right after surgery and I felt horrible.  This friend I have only known a few months.  She came with a wonderful spread.  Then she asked if she could pray with me.  I was overjoyed!  She was the first person who has asked to pray with me since I left my church in Athens.  At Brookfield people always offered to pray with you, and I desperately missed that.  So here this new friend sat, held my hands and prayed for me!!!  What a wonderful gift she gave me. Another friend has come and cleaned.  And our dear sweet friend has faithfully come every week to clean my house and do my laundry.  She cares for my kids and listens to me cry.  She does flashcards with Aidan and lets me take naps.  Miss Nonie has been a life saver, and I am beyond blessed by her generosity!  Still another friend has picked up laundry to iron for me! And the Amazing Darla and Brett watched over or beloved Ranger for almost 2 months!!!

This post could go on and on...but it will not! :)  I just have to thank a few more amazing friends.  My dear sweet friend Jen (Aidan's Godmom) and my other sweet friend Jenn (Chan's Godmom) have been huge supporters by taking the kids, fixing food, praying, talking, and just being there for us always!  Many of you know I enjoy to sew.  My 2 sewing buddies have been a source of great comfort to me.  Beth has provided meals, watched my children, taken Brooke to Awana and encouraged me so many times.  Jen has also provided meals, and sent me endless texts just to check up on me.  Every time I get a text from her I smile, knowing that she took time away from her 4 kiddos to check on me!  Friends from our home school co-op have helped Aidan and Brooke to get there so they do not miss out!  My dear friend Jen has listened to emails, texts, and my own voice when I just needed a friend.  Before we moved to Athens she gave me a card.  It said, "We will always be friends, I pinky swear."  I love this card and still have it on my fridge.  Every time I see it, I am reminded of her love for me and my family, and all the times she has hugged me and let me cry on her shoulder!  You do not find many friends like that!  And then there is my Julie!  Julie has been my friend since college.  She is the friend who pretty much knows everything about me, and she still invites me over for coffee! ;)  She has given in more ways then I can even list.  She has done my shopping, cooked, taken my kids, listened, fed me coffee, and just been there.  

As this is only a blog post I can't mention every single person who made an impact on my life over the past few months.  But I am so grateful for all who took even a moment to pray and love on our family.  To be honest, these have been some of my darkest days.  I have felt great abandonment and sadness.  I am blessed beyond measure knowing that God had me in His arms.  Blessed to have a family who would move mountains to help me.  And friends who have shown up in so many ways.  I sit here and know that many uncertainties lay ahead, but I can rest knowing He has a plan.  This post may just seem like a long list of thank you's but for me it is a way to show even something small like prayer or a text can make a huge impact.  We can cause great love or great sadness in others lives.  Think about this for a moment....even with all the love and support I still have felt great sadness.  Imagine a person who has no support, no one praying, texting or loving on them.  Please find a way to make a small difference every day.  God knew just what I needed to get through, and He also knows who else needs some encouragement and love!  Happy Thanksgiving!  Here is a song that inspires me to be a better friend!  love you friends!

I'm With You

He will answer...

really have not wanted to write in awhile.  just living daily is completely wiping me out.  do not get me wrong, i am glad i had surgery.  i have found relief from many of the headaches i had.  but as so many with eds and pots have found, you fix one thing and something else rears its ugly head.  this is where i am at now.  and honestly i did not want to write.  did not want to hear myself talking about more problems.  did not want to imagine people reading and thinking, "oh here we go again!"  the reality is though i started this blog to inform about our family as well as educate on chiari, and now eds and pots.  to be an honest place where those like our fam can find comfort in knowing they are not alone.  and for those who are healthy and thriving to be thankful and rejoice in that.

can you imagine waking every morning with the fear of stepping out of bed?  some of you with chronic illness may understand this. i lay for at least 10 to 15 minutes just contemplating getting up.  not because i do not want to meet the day, but because all the way from my toes to the back of my head i can feel the pain. thankfully once i am up for about an hour some of my joints loosen.  but some days i wonder if my legs will support me.  the little cries of chan saying "mama get up!" encourage me.  the dog pacing back and forth needing to be let out, well force me.  so i do it.  grateful to have many reasons to keep dragging my body from bed. 

since surgery i have a new little quirk.  every time i move my head even a tiny bit, i hear crunching.  all day and even through the night this sound fills my ears.  i have to say at moments it is maddening.  it is like a chip bag be wrinkled in your head.  and if i move to quickly i get that horrible pulled neck muscle up through the back of my head.  my neck now cracks on and off throughout the day.  i struggle daily to not let this constant noise in my head get to me.  i also think the nerves in my scalp are over sensitive.  my head feels as if i have a bad sunburn.  i am praying this goes away as the nerves begin to heal.

i have had 2 pressure headaches since surgery.  not sure what causes them but believe it may be due to my csf levels.  dr duranni has ordered a flexion/extension mri for when i see him in december.  all i can say is these headaches are the worst pain i have ever been in.  your head literally feels as if it will explode.  i feel light headed, throw up, and basically just lay in bed moaning.  poor tim last time kept bringing me hot rags for the front of my head while i laid on a heating pad.  and i am not exaggerating when i say it hurts to even speak or listen.  these are moments when i rely on God the most.  my only hope in these moments is an eternal place to rest.  and true joy when the headache passes and can be with my family!

each day i am learning a little more on how to deal with my new range of motion.  driving is hard, and going out is exhausting.  today tim told me again to slow down.  i told him it is hard for superwoman to hang up her cape, and it is hard for me too.  but he is right...i have to not push myself.  i do so love being out though!  being with friends and the world makes me so happy.  we are learning to be content though within our own 4 walls. 

tonight i woke up with a numb hand and a throbbing arm.  my head was spinning.  even though i was sweating, i was shaking from being cold.  slowly i have started to feel better and now i sit here typing.  soft restful music is playing and i am nervous i will be tired today.  along with healing we are still fighting for our house, not sure if we will be able to stay.  tim is working long hours, and is trying hard to keep up here.  bills, dishes, and laundry stack up daily.  we have learned to look past most of this.  we have learned that a family movie, reading a good book, and eating dinner together are important to us.  please know i say all this to show my heart.  so many of us have tough roads, but i have found with Faith and Hope we can get through it.  if we cry out to Him, He will answer.  Love this song...brings me truth!
Plumb "Need You Now"

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!