Merry Christmas from the Crown Fam!

Our Christmas letter used to be something I mailed out with a photo of the kids.  For the past few years, I have only blogged about our year in review.  I was thinking the other day how the letter used to be such an excitement to Tim's granny.  I would take the letter down to her.  She would hold the envelope close to her and say, "Oh I can't wait to read this later, with a nice cup of tea!"  Since she has passed away, I have not written another letter.  Not really for that reason, but I know how special it was to her.  I thought 2010 and 2011 were quite the years for the Crown Fam!  Well 2012 proved to be quite interesting!  And to be honest, we are ready to start fresh in 2013!

Tim and I still cringe as we think about moving out of our house in Athens!  We still are so thankful to our friends Beth and John!  Without them, it would of been just Tim and I packing up that house!  And what a blessing to have a crew of men from Faith Bible Church unpack the truck here right after a huge snowstorm!  We have sat on pins and needles over the past year as we thought we lost our house, then saved it, then lost again, then maybe saved, back to lost, and finally...Saved!!  What a blessing to know in 2013 we can stay here!  Even with its falling down walls, and crazy other problems, it is home! 

Thankfully, Tim still has a job!  We are so blessed!  Although the hours and the drive are hard, we are thankful! With the year I had, we needed a stable job for Tim.  After months of pain, and then surgery, and then healing....I finally feel that I am back to my old self.  I am so excited to feel half-way normal again.  Of course EDS is always going to be a part of my life.  But now I know what is going on, and can work with it. 

The kids are doing great!!! Aidan is in 3rd grade.  He loves to learn about insects, math, and the presidents.  He is starting Basketball in January.  He also loves to swim.  Aidan still has a passion for food!  He loves to cook and create his own recipes.  His lifetime goal is join the army and be a chef!  I love his sweet heart, and great love for others! 

Brooke is doing amazing!!! We found out in the Spring that her neck is slowly healing.  We are hoping for more good news this Spring.  She is waiting for her beloved Dr. B to say she can take ballet.  For now, she is going to be in Cheer leading.  No worries...the cheer leading is very low key, and she can go at her own pace.  Brooke also loves to swim.  She spends so much of her time designing dresses in her notebooks.  I am amazed how creative she is!

Chandler....what can I say....he makes us laugh all the time!  He is definately the life of the party here at our home!  Chan keeps us busy and loves to talk!  He is very into Thomas the Train, Bob the Builder, and Cars.  He can name almost every engine from Thomas. 

We have been so blessed by so many over this past year!!!  We can't say enough how thankful we are!! I have not sent out enough thank you cards, and I am sorry!  Please know that we are so thankful and our hearts just overflow with love!  We have also had some pretty incredible moments!  We are so thankful to Wishes Can Happen!!! They sent us on a wonderful trip to Chicago!  Brooke had a shopping spree at American Girl, and we had an awesome time at Shedd Aquarium.  Brooke was also a flower girl in my cousin Kim's wedding!  She looked so cute and was over the moon to be all dressed up! 

I am really excited about some changes that will be happening to this blog in the new year!  Since it has become more about our family journey, the name will be changing.  It has been on my heart for awhile to add a few others things to the blog.  We have met so many amazing families who are living with Chiari and EDS.  I would like to have some of these families guest blog on our site.  Ever since I can remember I have been inspired by strong, capable women.  So many of these women never get to tell their story.  In the new year, I would love to have women who have inspired me guest blog.  We all have such a special story to share, and I am excited to continue to tell ours while sharing others. 

During this Christmas we pray for all the families who have lost over the past year.  We pray for all those who are seeking comfort, and love.  For us, no matter how hard it gets, Christmas is a time of Hope and Joy!  This is our pray for so many others!!!
Merry Christmas From the Crown Fam!
Tim, Melinda, Aidan, Brooke and Chandler too!

a Christmas Miracle

I am a Christian.  I have said this before and I will probably re-say it at least a 1000 more times before I die. I see God everywhere.  Even on days when it seems pretty bleak, He just shows up and blows me away all over again.  I am so inspired by the miracles that seem to abound around Christmas.  I think people at this time of year, actually just stop to listen to what God has to say.  Their hearts are open and minds clear.  For many, they also want to experience that Christmas Miracle.  Something so special they step back and smile, shaking their head in sheer amazement.  Tonight I had my own Christmas Miracle.

The past few days we have been penny pinching, ok wait the past few months.  I try not to talk finances on here because honestly we are blessed beyond measure.  I never feel right saying where we are financially.  I guess because in comparison to many we have so very much.  But in order for my miracle to make much sense, you need a little back story.  We are trying very hard to keep our house, so we are being very careful how we spend.  But the bottom line....when you have had as many medical issues as our fam has had, your finances will more than likely be devastating.   And to top all that off, getting caught up after a job loss, then a move, then a job loss, then a move...well I am sure you get the idea.  Again no complaints, just reality.  So when it is close to pay day, it gets tight.  Today, so tight that we are literally down to our last 2 dollars.  Yes last 2, no pulling from savings, 401K, or some off shore account because they simply do not exist. My mind has to find creative ways of making it to Friday.  We have to make food and gas money stretch.

Today, I laid out my plan.  Tomorrow I go to Cincy for the day.  Tim needed something easy to feed our children for dinner.  Aidan had something to go to with my mom.  My gas tank was on E, but the gas light had not come on yet.  I knew that a certain grocery store in our area processes checks the old fashion way.  We set out.  I dropped off Aidan, still no gas light.  We headed to store.  To complicate things further, I needed to make sure I only spent a certain amount.    I have been able to get Brooke and Chan a Christmas gift, but still needed something for Aidan.  I knew it would work out because even when we had no job last year, God managed to help me get them something special.  There we were, shopping and adding.  Around the corner in the dairy section came a sweet face we had not seen in awhile!  A lady I used to work with was out shopping too.  We chatted for awhile.  In the past she has watched Aidan and Brooke (before Chan) and they just loved her.  We used to work together, and she was always a solid rock that could accomplish any job she was given.  I was sad when her and I no longer worked together.  After chatting for a bit, we both continued to shop.  I was almost done, and there her sweet face was again.  She came right up to me and told me she was buying my groceries.  I started crying ( I mean I am crying now, what do you expect!).  I told her about my $2.  But I did not need to tell her, God had already told her what to do!

You might think, "Ah a nice girl doing a nice thing.  Nothing more Melinda."  No way!!!!  I should not have been at that store tonight for so very many reasons.  But there I was, there she was. God planned this out so long ago, and I just needed to be there.  What a comfort to know He had my back.  And not only in providing the groceries, but allowing me now to get a little something special for Aidan.  Stuff like this is too good to make up.  It makes my heart see the beauty in His plan.  It makes me so thankful that others will allow their hearts to be opened to hear what Christmas Miracle they can be a part of!!!  And to make this miracle even better....my gas light has still not gone on!!!  I hope you can believe in a Christmas Miracle too!

healing and healthy

aaahhh....there that is my long sigh of relief!  I feel better now than I have felt in ages!  Honestly, I never really thought I would feel this good again.  No I did not drink the miracle cure, but I am healthy again, and my body is healing.  What is even better.. I am laughing, I see joy and hope ahead! 

A few years ago our family began on a journey to change the way we eat.  It mainly started because my poor hubby was very sick.  He could barely eat, and when he did he had a hard time keeping anything down.  We went to doctor after doctor.  They all said the same thing, "We have no idea."  Then a friend's hubby had similar symptoms, and he was getting great results from changing his eating habits.  I started reading more about eating raw foods, and our fam jumped on the "bandwagon".  But not wholeheartedly.  We changed many things.  We started consuming fresher dairy, meats, and veggies.  We cut most of the grains from our diet and the ones we did eat I would soak.  We noticed a huge difference in health.  Tim started feeling so much better.  Aidan's asthma completely cleared up.  Chandler was the only one of our kids who did not have recurring ear infections and need tubes.  Coincidence?  Possibly, but I knew that what we were doing was helping.  Over time though it became very hard with surgeries, moves, job loss.  We stuck with some things, and others we went back to our old ways. 

After all of my medicine issues I decided it was time to take this to the next level.  To be really honest, I am sick and tired or being sick and tired!  I know food will not cure a brain malformation, or make my connective tissue less stretchy, but it sure can help my mood, attitude, and numerous other things.  I have been very strict now eating for 2 weeks now.  For those who are familiar, I am eating a fairly Weston Price diet.  I have fermenting veggies on my counter and in my fridge.  I have grains being soaked.  And it seems like I am roasting a chicken every time I turn around.  The good news is my body is healing! I am on zero pain meds!  I have only taken advil a few times in the past 2 weeks.  I am only on 2 meds now- my heart med, and a muscle relaxer.  The muscle relaxer I am using less and less.  And I plan on talking to my doc about weening me off the heart med because with the food I am able to maintain my blood pressure. 

I still am struggling with sleep.  But to be honest I have never slept much.  I am also struggling with being grouchy.  But to be honest I am a home schooling mama of 3 who is trying to be a pioneer woman.  And my neck still hurts at times, and my joints still pop out a lot.  But I keep lots of rice packs in freezer, and allow myself resting time.  And the pay off....a clear, focused mind!  A mama who is super excited to be teaching her kiddos!  And a body that does not feel like it is being drug around. 

I am so thankful for my sweet friend, brother, and sis-in-law who have been my cheerleaders through this!  They send me encouraging texts and messages to help me through.  You might think this is easy, and let me say it is not!!!! Changing your eating habits this drastically and dropping some of the meds I was on was a huge challenge, but so worth it!  I know this is not for everyone, and for some may not help.  But for me it has been a huge blessing!  I am so thankful to all of you who continue to lift our family up in prayer.  What a blessing to see how God has provided just what we need- food, docs, and friends!

And Here I Am!

so many of you know i had a visit to the er about a week and a half ago.  i have not blogged about it because honestly the whole thing was miserable.  and miserable is not even the right word.  i honestly felt like poor green haired anne as i moan it was the pit of despair.  then i hear dear mirial warn to despair is to lack God.  and might i say for a moment i was so out of my head, i am not even sure i could grasp onto the smallest amount of faith.  my head is clear now.  i feel like i can write about the whole experience.  but let me say this post may be slightly untamed.  for the sake of being truthful, i will do just that.  i think that is why this post has been so hard to write.  i have seen a side of me that is hard to admit even exists.  but someone, somewhere may need to hear this.  they may think they have too lost their mind.  and i tell you if your story is like mine..."you.are.not.crazy!" 

one thing i know about myself is i have never tolerated meds well.  i am allergic to many, and most just make me feel miserable.  when i was in hs i was diagnosed with endometriosis(a horribly painful female issue).  one of the only things to help with pain is birth control.  i hated the idea of being on it.  but reluctantly took it.  my hair started falling out in clumps.  i saw this was a side effect and told my doc.  his response, "oh don't be silly!  that side effect never really happens to anyone."  I reached up, ran my fingers through my hair and showed him.  his eyes became big and he believed.  i came off those meds and never tried them again. 

so when all my pain started with my head and neck, i talked to the doc about meds.  before surgery i was taking vicodan, and she also prescribed me an anti depressent.  not because i had slipped into the "pit of despair", but because anyone going through what i have gone through could and would most likely be depressed.  this managed my pain and emotions fairly well before surgery.  after surgery, i was put on much stronger pain meds.  morphine in the hospital gave me hives.  i suffered through the hives because i needed the morphine.  then they sent me home with percocet.  it did nothing, and i do mean nothing.  it was as if my body did not even recognize i was taking pain meds.  so i quit taking them.  this is when i was admitted back to hospital and they tried to manage my pain yet again with morphine.  then they sent me home with oxycodone.  this managed my pain well, and i thought all was ok.  but i felt foggy, and irritable.  my pain was ok, so i pushed through...for weeks.  then i started getting these headaches.  the only way i can explain it is like my head was exploding, and that is putting it mild.  i had 2 of these headaches and all i could do was roll around in bed and moan.  i kept a bucket close to puke in, and then moan some more.  i know not pretty...see why it is hard to blog about?  then on thanksgiving i became really sick.  i could not keep any food in.  i thought it was the flu.  but it drug on until the monday after.  by tuesday it was hard to even hold my head up, and i was so ill.  my sweet friend came over with chicken, broth, and mashed potatoes.  her and i decided i needed to heal with good wholesome food.

that night, that tuesday, was the worst night of my life.  if you think i am being overly dramatic...i am not.  it is hard to even put in words because i can't explain everything i felt.  but if you have been through something similar, you will understand.  i ate a healthy meal, and took my meds (pain ones included) that night before bed.  at 3 or something (i really have no idea what time it was) i woke up in so much pain.  i knew as soon as my eyes opened i needed help.  i dialed my mom's number and whispered into the phone, "help"  i heard her say, "i'm coming."  i hung up and dialed 911.  i think i may have yelled help into the phone before i fell on the floor throwing up.  my heading felt like it was cracking open.  i wished more than anthing this was a night tim could be here.  i yelled for aidan.  sweet boy came running and talked to the 911 dispatcher.  i vaguely remember poor brooke trying to comfort me as i army crawled through the hall, throwing up every couple of inches.  my body was spasming all over.  i was literally yelling.  i do not yell when i am in pain but i was.  i could hear myself but could not stop.  i was sweating and just praying that God would rescue me.

when the ambulance came, i was still throwing up and screaming.  they kept asking me questions which i tried to answer and know i did a terrible job.  i kept hearing them say, "it's a migraine."  and i kept saying, "no my head is exploding."  in this moment a mother should worry about her children.  she should fear the trauma they are being exposed too.  she should jump up in her own pain and comfort them.  i did none of these things!  i just laid there...i just prayed as best i could to watch over them until my mom got there.  thankfully a fireman sat with them.  my mom and dad came, and they comforted my kids.  the ride to the hospital was excrutiating.  i do not remember much except continuing to be sick and screaming.  When i was taken to er, it went from bad to worse.  i do not really remember the first part well.  i just kept hearing migraine, and turn the lights out for her.  i was covered in my own sickness, and they never once came to change me, or wipe me off.  at one point a nurse came in, flipped on the lights and said, "listen, you better start talking straight or we can't help you!"  I just stared at her and moaned, "my head".  the doc came in and said, "so you have ms." "no eds." "what is eds?"  "Ehlors Danlos Syndrome, it is a connective tissue disorder.  i had a c1-c2 fusion in september." "ah that would not being causing your headaches. it's a migraine.  will give you some pain meds and get you out of here."  he never checked my incision for leakage.  he never drew blood to check liver function.  they barely gave me an iv fluid, just ran the line so they could give me 2 shots of dilaudid(pain med) and phenergan to keep it down.  my mom came in and started washing me off, finally!!!!  the pain meds made that terrible pain in my head subside.  i lay there barely able to move, but finally quiet, and restful.  another nurse comes in and says they have my discharge papers.  now we had to wait for my dad to come get us because he had taken all the kids home.  we asked if we could wait in room.  response- "you have to understand, we need the room."  ok, upset, but maybe they are busy.  so me in my super nasty clothes, and no shoes or socks...oh wait they did give me slipper socks, plopped my body down in a wheelchair.  my mom, very irrate at this point, wheeled me to the waiting room until my dad came.  the waiting room was completely and I mean completely empty.  i laid my head on my arm and closed my eyes.

now i know some of you may be saying, "oh melinda the medical profession sees all kinds!"  you know what..I DO NOT CARE!  i am human!  I do not care what my life history is, i do not care if every doc and nurse in that place was having a bad day, i do not care!  you may think i am being harsh, and you know what, i am!  it was all horrible!  i left there not knowing what the heck was wrong with me.  i was scared i could have a csf leak somewhere.  i was scared that horrible headache would come back!  it was unacceptable!

that afternoon i talked to my friend monica, who is wise and wonderful!  she made it all make sense.  she reminded me that people with eds do not process meds well.  she told me there was a good chance my liver had not filtered the pain meds like it should.  the pain meds may have built up to toxic levels.  then she said what made complete sense to me...it was like i was going through withdrawal. my brain clicked on...yes!  it was like all those crazy tv shows i watch where people coming off drugs can't control themselves.  that is how i felt.  it was like my mind and body were not one, and there was nothing i could do about it.  it was scary beyond belief.  that is where i knew i was.  i felt i had a plausible answer, and after talking with a few of my docs, i decided to see if it was true.  i basically detoxed my body.  i not only quit the pain meds, but also a few other meds i was on.  and to really clean my liver out and keep the inflammation in my body at bay, i gave up sugar and gluten.  not any easy task!  The first 3 nights were miserable!  i was no dainty pretty lady those nights!  I sweat out more water than was going in my body.  I walked and paced back and forth....wanting to run a marathon but not feeling able.  my brain raced, and the tears flowed like crazy.  i was scared and prayed so much.  again, this may sound dramatic, and well it was.  it is crazy what my body was doing.  4 days after all of this my head, for the first time in a while, felt clear.

it has been 10 days, and i feel amazing!!!  no i am not all better.  i am still in pain.  the pain did not leave.  my neck hurts and my hip, knee, and neck are popping in and out of socket.  by night, i hurt all over.  it is hard to sleep, and quite frankly i have been kind of grouchy to put it lightly.  but i am still getting quite a few meds out of my system.  and i still need to take some.  i am trying to work with my medical docs, as well as find natural ways of healing(which is a story for another day).  this is a lifelong journey.  but i have learned something, when i fall into "the pit of despair", look up- there is an hand reaching down.  i know this was a terribly long, and quite horrible(in more than one way) post.  i just felt it was important to write.  it is important because someone else may be suffering like me, and no one will listen.  that is a really hopeless feeling!  don't give up, keep searching.  we have to fight for our medical care.  there are amazing docs and nurses who take their oath seriously!  hold onto that until you find them!  many blessings!

putting up a Christmas tree when....

putting up a Christmas tree when your mother has undiagnosed OCD.  so i know many may be wondering about my health (haha) but today i am going to focus on the tree scene at our home.  of course there is no reason putting up a tree should be so difficult...but for me it is!  This was the first year the kids could truly help.  years past i have allowed them to think they are helping.  sweet aidan helped me drag the branches, pole, and ornaments from the basement.  all branches needed to be laid in proper color coded areas, while i assembled the base.  the kids jumped right in placing the branches on the tree.  and aidan helped me wrap the lights, and beads around the tree.  then came the ornaments.  honestly i am person who needs ornaments in a certain location.  I just can't have a breakable ornament at the bottom, or a wooden ornament at the top.  the tree has limited space and needs to be planned accordingly.  i know you are now thinking, "crazy woman..let your kids have fun. loosen up!"  and i have tried.  but as the ornaments went on the tree, i cringed.  chan of course is putting them any which way all over the bottom.  brooke has placed all hers right on the front.  and aidan is attempting to follow some sort of pattern on the tree- one front, one side, one back, etc.  me, well of course i am adjusting.  placing breakables up high.  taking back of the tree ornaments hung on the front and placing them in rightful place on back of tree.  aidan looks at me and says, "mom are you ok?"  i respond that i am a little nervous that they may not be in the right location.  he just smiles, shakes his head, and asks me were to move them.  so towards the end, things got on track!  the kids starting asking,  "mom is this a back, side, or front of the tree ornament."  smiling i would gently tell them were to place the special memory.  the tree looked lovely, not perfect, but lovely.  we admired it.  we took pictures of it.  we took pictures of the kids laying under it.  then ranger heard a noise outside, squeezed himself up by the tree to see out the window, and spun the tree front to back.  and of course i smiled...no total lie!  i yelled at the dog to get out of the living room and not come back in until after Christmas!

this little ramble is dedicated to my friend Monica who understands exactly what i mean!  and my friend Julie who has the courage to let her kids be kids and decorate the tree themselves!  love you both!

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!

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....

Another Day

This is going to be a quick update post because I am too tired to do more.  I know many of you having been praying for my upcoming trip to see Dr Henderson.  On Sunday, Tim and I discussed how hard this trip would be on use financially.  And also on me physically.  I am really just not up to traveling like that right now.  I told Tim I was going to email Dr B (Brooke's doc) and see if he responded.  So on Sunday night i sent Dr B all my scans and a short email with my plan for surgery.  I told him I just wanted to be sure from a neurosurgeon that I was on the right path and there was no chiari.  I also emailed him about Aidan and his increasing headaches.  Poor guy has really been struggling.  Not long after I received a response! (As far as i am concerned, this doc is amazing!)  He first addressed Aidan's headaches and said he wanted more scans done.  Basically he wanted the scans I had done.  Then he told me that he saw no Chiari and I was on the right path.

This email really encouraged me to push forward.  It also helped Tim and I to decide to cancel my trip to Maryland.  What a relief!  As much as I wanted to meet the amazing Dr H, I was not sure it was where I needed to be.  I have a second opinion now and feel confident in this decision.  So my surgery is scheduled for September 24 in Cincinnati.  The scary part is I am not supposed to do any lifting, driving, or much of anything else for 4 to 6 weeks!  Yikes!  I have to make this work!  There are no do overs when it comes to this kind of surgery.  I have to be strong and fight the urge to control every little detail.

If you could please pray as this is a very scary road.  I know the surgery has the potential to help my neck and head.  I also know I am losing the feeling in my legs very quickly.  One minute they are completely numb and the next they are searing with pain.  I am trying to walk, but stairs are very hard as is long distances.  I am not sure if I will need to resort to a cane soon.  My heart is sad, as I feel my body slipping away without my control.  And yet I feel so thankful for what function I do have.  i am seeing my doc tomorrow about the costochondritis.  It is becoming hard to breathe.  I hate complaining so I am very sorry if this is how it sounds!  I am mainly asking for prayers.  I will write in more detail soon!  I am not proofing this at all, so sorry for mistakes!!!  Thank you for all of the prayers and support!!!  They mean more than you could possibly imagine.

A 2 year Zipperversary!!

today....2 years ago brooke had her brain surgery.  look back here. we were in her room by know and thanking God for guiding the hands of the docs and nurses!  thinking back it seems like a lifetime ago.  brooke has come so far and we are so pleased with how her surgery turned out.  we know she was in His hands through it all!  so excited to celebrate this day with my bug!!!  

here is a video my sis put together before and after surgery: Brooke's Journey

A Trip to the ER

i will not be long winded today because i am feeling really crummy.  i am blessed beyond measure by people who pray for me.  and as crazy as it might sound to some...these prayers are what carry me through each day.  lately i have not felt much like moving, but knowing that i need to keep going for my fam, and that others care enough to pray make me pick up my feet.  the past few days have been difficult.  i have struggled with terrible head and neck pain, and also chest pain with trouble breathing.  last night was awful.  to be honest i was not sure if my heart was giving out or what.  by this morning i had no energy and my pain meds where not helping at all.

my mom drove me to the er to see if i could get answers.  i had already written it off as a waste of time since most docs at the er do not know a lot about ehlors danlos syndrome.  but i needed to make sure all was ok...or at least not life threatening.  i guess you could say that is what i found out.  but i feel even more weighed down with what i now know.  while walking into er i could barely breathe and my legs felt like concrete.  they took me back right away and hooked me up to the ekg machine.  it came back normal, hooray!  the doc wanted a chest xray too.  he also ordered me some pain meds.  the xray also came back ok.  but he feels i am suffering from chest wall pain. (did a little research also called costochondritis) basically the cartilage connecting my ribs to my sternum are inflamed.  there is no cure or way to fix it.  pain meds and time can help, but it can come back.  he said that docs see this a lot in eds patients.  he also feels that i do have pots and wants me to follow up with both my primary doc and dr tinkle.

trying to process all this.  i now have 3 chronic conditions diagnosed in a matter of months, and there is really no cure for any of them.  pain management and surgeries may help, but reality is they are degenerative.  i cry on my pillow trying to figure out how to be a wife, mommy, daughter, friend  when it is painful to move.  i try not to feel sorry but thankful for the gifts i do have, and the friendships that bring me true joy.  i try not to cringe at the thought of using the cane laying in my van, or going to get the wheelchair tag for my car.  and i desperately cling to some kind of normal in my life hoping that i can just push through it with out more pain.  i really can't pretend i am ok anymore.  those days are past, it is hard to even drive.  i have to let the reality of this life in and quit putting on a mask of ability to do it all.  do not take this in any way as giving up...just surrendering to a new life where i have to face the reality of my limitations.  thank you as always for continued prayers and support of our family.  love the beautiful relationships that keep my head above water! 

Moving Mountains

Post after post I feel like I have shared our journey.  Unfortunately it has never really been the journey I have wanted to share.  I keep wanting to post how our lives are getting back to normal, and life is pain free.  I dream of a day when this blog is just a place to post happy pics of the kids, and give quick updates on family fun times.  And for many, they may have walked away from this blog because the posts are always revealing the next big medical, financial, or life crisis within our fam.  It breaks my heart that time after time I find myself writing similar words on this blog....chiari, eds, money, doctors.  But one word I keep writing I love...Faith!  And quite frankly it is the only word that lets me keep writing this blog.

Today has been a day of complete reflection.  A friend took the kiddos to her house for the day.  I have rested and contemplated the last few years and the months to come.  Most days I shove this info to the back of my mind, I just have no desire to deal with it.  I try with all my might to push through the pain and live normal.  I think if I ignore it it is bound to get better, go away.  All my life I have fought this stupid beast.  I have missed out on things because I was sick or hurt.  I did not understand why other friends could go away places and I always went only to get sick.  By the time I hit college I had lost all hope of being the normal kid who goes away to college.  So I told myself living at home through college would save me money.  Through the years I have learned how to deal.  I have learned triggers such as food, heat, exercise, and smells.  This has helped.  I know we all have mountains to climb and mine is really no different than thousands of other people.  I just have to figure my way over it.  Or maybe just my way to live with it.

Tim and I really feel I need a second opinion.  So I am seeing Dr Henderson in Maryland on August 27.  Thanks to an amazing person, I was able to pay for the visit and a plane ticket.  Dr Henderson really is the best in what he does.  He is a hero to so many.  This does not mean I am not having surgery with Durrani, just that I want to make sure I am taking the right steps.  I have moved my surgery to September 24.  I can honestly say I am very scared for this.  Not the surgery part, the healing part.  I am not good at handing my life over to others.  I need to feel like everything is done my way.  I have certain ways to organize toys, linen closet, and just life.  I have to let these things go and embrace rest.  I am slowly being forced to do this, as my neck and head make it impossible to do most things now.  But my heart keeps screaming, "I can do that!!!  I can keep up!!! Just watch me!!!"  Thankfully I have had a few friends that have told me to let them do it.  They are forceful yet loving and it has allowed me to let them in.  And my hubby is very good at telling me to slow down.

I know many of you pray for our fam, and I thank you so very much!  I can't tell you how blessed we are to know we have people lifting us up.  I would never be surprised of those just walking away because it is too dramatic, too much.  Thank you for the prayers....the financial help that keeps us floating just above water....and the endless kind words of encouragement.  I do have a few specific prayer requests for those who will pray: Please pray for Brooke.  Brooke is having vision episodes.  Her eyes are fine, but she is having times when her vision is blurry or just not there.  She is sure her eyes are broke.  :(  I keep trying to explain it is her brain.  This is scary for a little one.  Please pray she grows to understand what is happening.  Also that I can get Brooke in to some specialists for her urinary and bowel problems.  They are in cincy but the idea of more trips there scare me!  That is really not the most pleasant drive.  Please pray for Aidan.  He is such a trooper and a huge help to me.  But I know he is struggling with headaches.  Please help the PT to happen soon (he is on a waiting list), and we find some way to relieve the headaches.  Please pray for Chandler.  I am so worried after surgery.  He is a cuddle bug and will not understand why mama can't hold him, or why he can't jump all over my bed.  Please pray for Tim.  He is my rock.  He has been my biggest supporter, and my greatest comfort.  I feel most at peace in his arms.  And yet I know this is all tough on him and a huge responsibility.  He works so very many hours and is exhausted.  I just pray for his health and sanity.  I hate asking for prayers for myself, but I am desperate!  I feel like I am walking around with a 50 lb bowling ball supported by a small stick that is going to snap at any moment.  Every joint has been popping in and out of socket- my hip, knee, and wrists being the worsts.  My hearing is really bad, and I am scared it is going to leave and not come back.  I am trying to eat super healthy to try and clear up my stomach issues and see if it helps with any other things too.  Not an easy task.  Thank you for being faithful to our family, for carrying us when we need it.  I pray everyday for the blessings that surround our fam and those who bring those blessings about!!  I lean into my Faith because with it we can move these mountains.

Perspective

I have been trying to write this post since Friday night.  I just have been not in the mood to put my feelings down.  I think mainly because my mind is all over the place.  I am having trouble finding perspective in this whole situation.  In fact I am sorted tired of hearing myself talk about it.  I do not want to remind myself let alone others where my family is on this journey.  I really want to quit focusing on us, and move on.  Sometimes I wake up and lay in bed and think "today I am going to push forward and not even think about any of this EDS, chiari, and surgery stuff."  Then I put my foot on the floor and I am quickly reminded there is no forgetting.  It is not going away.  It is here to stay.
On Thursday very early I left for Cincy with my mom, sister, Aidan, and Chandler.  I had to be there by 10:30 for a flexion/extension mri and a 3D ct scan.  My mom dropped me off for the scans.  The CT was first.  It made me pretty dizzy as you have to turn your head to left and right and hold them there.  The MRI really bothered me, as you have to hold your head way back for several minutes.  My mom and I then had an appointment with Dr Durrani.  My mom was seeing him too.  She wanted to find out if her symptoms were due to EDS also.  One thing I will say about Durrani is you wait and wait in his office.  I started getting really sick.  It was so bad I sat down on the floor and laid my head on the chair.  This is pretty bad, cause doctor office floors are icky! When they finally called us back my mom had to get me a cool rag and some water.  I thought I might pass out, the office was so hot.  Thankfully I made it.
Dr Durrani came in and his first comment was, "Oh you do not look good my friend!"  He did go over my scans first but I will come back to that.  He did look at my mom's scans and found some interesting things.  He believes that she has EDS.  He was quite impressed with how bendy she was for her age.  But he also saw many signs on her scans.  He saw that she had some discs that were causing her numbness in her hands.  He also saw that she had an enlarged pannus muscle which has developed over time to keep her head from being wobbly like mine.  The crazy part is she had terrible headaches when we were little.  This is how her body compensated.  Thankfully her body found a way to help itself and it did not lead to her being paralyzed or death.  I am so thankful that was God's plan for her life!  He did tell her she needed surgery on her neck, but different from mine.  He also wants more scans of her lower back and he is monitoring a mass that is right next to her spine.  He feels the mass is benign but wants to do further testing.  I know my mom's head was spinning.  This answers so many questions and yet makes so many more.  So if you could please pray for my mom!
Here is what I found out....I need a C1-C2 fusion.  The 3D CT showed that my vertebra are uncovered by 90% when I turn my head.  This is not a good thing.  It is what is causing headaches, dizziness, black outs, and severe neck pain.  I wish I had the pic to show you!  It was pretty amazing.  But he kept the scans.  I will try to post a similar pic on here but it will not be mine. He wants me to wear my collar at all times (easier said then done). My surgery is scheduled for September 19.  I will be there about a week and then on pretty strict rest for at least 4 to 6 weeks.

                                         This is not mine, but similar.  C1-C2 Instability

I have to be honest my brain is on overload.  Tim is trying to get off, and I am going to try to schedule everything so I do not feel bogged down at the last minute.  Part of me is just telling myself, "It is not a big deal."  The other part is shouting, "you only get one chance to make this work!  If you do not rest you can mess it up more!"  And most of you know how I am with rest! Tim is also encouraging me to get one more opinion.  He just wants to make sure I am going down the right road, especially with our family history and Brooke's Chiari.  The problem is there are only 2 other docs I would even ask for an opinion from and they are both out of state.
Thank you all for your continued prayers and your love for our fam!  I will continue to update you all!  Many blessings!

Some Clarity

I need to write this post to convince myself.  To tell myself "Stop!!!!"  "Slow Down!!!"  "Rest!!!".  I never ever give myself permission to relax.  I feel this constant drive inside my mind to keep going.  Since the post I wrote a few weeks ago, you could not possibly imagine what I have "accomplished".  And yet I lay here in agonizing pain.  I am so angry at myself and frustrated with my lack of commitment to myself.  I am also disgusted of hearing my own cries of sorrow.  Most of you may be reading this and wondering where I am going with this and why I am rambling.  let me explain...

I was diagnosed with something I have had since the beginning of my life.  I have always struggled with various health issues and concerns, but always told it was nothing.  I was fine.  I began to believe this, so even when I hurt I pushed through.  When my hips would pop out of socket and cause searing pain, I would tell myself, "You are fine, just smile."  So I did.  When my head felt like it might actually fall off my shoulders, I would sometimes rest, but continue on.  Now I am not saying this to hear a "good for you."  I am saying this because for 35 years I have been telling myself that I am fine.  Now I know I am not fine, and I really do not know what to do with that.  Even though I have known for a while that this body was getting the best of me, I kept pushing through it.  I had to...I was fine.  

This reality has let me exchange my 35 year old body for an 85 year old body (with a great complexion)!  I can now give myself permission to slow down.  But when I slow down my brain interferes with this process.  I am hearing all the things I should have ready and done.  I mean every person who can hardly move should organize all their holiday decorations.  And I should make gardening and organizing the kids memory boxes top priority.  It is like a mini war going on in my head!  "Yes make all your families food from scratch, and make sure you rest while doing it!"  I feel like I will be judged if a frozen pizza box is in my trash, or my kids watch movies while falling asleep.  The idea of the perfect little family has gone out the window.  I can no longer smile through the pain, even though I am desperately trying to.  

One thing I am quickly learning is when trying to correct one thing another issue pops up.  The braces help, but wearing them makes my leg muscles cramp up.  They are so used to overcompensating for my bad back, they now do not know what to do.  The heart meds are helping my palpitations and feelings of faintness (which means I probably have POTS), but the meds make me very restless at night and I can't sleep.  Last Friday I was so exhausted and scared I headed to a friend's house for a good cry.  We talked, and shared, and believe me I tried to cry.  No tears, not one.  Why cry?  I just want to let go for even a moment.  To let this all sink in.  And for some reason I just keep saying, "I'm fine, we are managing."  I AM NOT FINE!!!  See I can write it! :)  

You may be saying by now, "Good Grief Melinda, there are people suffering all over the world with many worse issues!  Get over yourself!"  And I would totally agree.  I have horrible guilt for feeling bad.  I want to just say no worries, I can manage.  I am angry at myself for feeling like a burden, or a nuisance.  I do not want to be asking "why me?"  And to be honest I do not.  But I do ask..."How can I?"  How can I give one more bath?  How can I cook one more meal?  How can I drive one more place?  When every step takes effort, and every movement causes pain, I have to face the fact that my life needs to change.  Please know my heart...I do not write this for sympathy or reprimand!  I write to state my feelings for myself, and others.  I write to maybe show others that we alone can't do it!  We need a community, we need a great God!  I am so thankful for both, and I need to stop trying to be my own community, and fall into the arms of my God.  

A Simple Nudge

I will start this post by saying this is about my faith walk.  It has no medical info, and I understand if you want to close the blog now.  For those of you who are staying, you should know I am not one to talk about religion.  My faith, yes, but religion, no.  I truly believe that as Christians we need to embrace other Christians no matter what church they attend.  We all fundamentally believe the same, and our divisions cause confusion.  Before I go on I will say I have thought a good deal about this post.  I have felt very nervous about writing it.  I have always had this need to be understood, and I fear this post may be hard to write in an understanding way.  Basically I feel the need to explain myself for decisions I have made and those I am going to make.  Why?  Well again I just want people to understand where I am coming from.  I guess it is my silly feeling of being judged.

I grew up in a catholic family.  We went to church every Sunday.  My parents where very involved in church as well as prayer meetings outside of church.  As funny as this is going to sound, my parents were charismatic Catholics.  Bet you did not know that was even possible, but it is.  We went to prayer meetings where the music was so alive, and you felt God all around you.  People would sing and dance.  I loved it.  I was young, and did not understand everything.  As I grew older we did not go as much.  But my parents still were around many families that had the same values as them.  For various reasons it was not possible for me to be married in the Catholic church.  I was very sad, but still went to mass.  When Aidan was born there were some things that happened that made me realize I needed to find a church home for both of us.  I did not leave the catholic faith out of anger, just felt at the time God was leading me in another direction.

This is when I found my wonderful First Christian family!!!  I can't say enough about the love of the people at that church!  They have supported our family through job loss, surgeries, and heart break.  The people of FCC have prayed for our fam with unending love.  I am constantly moved by these wonderful people who continue to love on our family!  This was also the church home where I worked for 3 years with the preschool age children.  I loved every Sunday sharing Jesus love with them.  What a Joy to hear them praise Him!  How humbling to hear their sweet prayers each Sunday.  They changed and grew me in so many ways.  I miss it terribly, but I also know my body could not handle this job anymore.  God knew this, He prepared my heart for this.

When our fam moved to Athens I felt very alone.  I missed my friends, my family, my home.  We started going to Brookfield Church.  All I can say is WOW!  It blew me away.  I made instant friends, and the service was alive and wonderful.  I felt like a kid again in those prayer meetings.  The music, sermons, and prayers moved me to the core.  When I say that I am so very grateful to Brookfield it is not an understatement.  I miss it all the time.  I have desperately wanted to go and visit, but have not been up to it.  I pray every Sunday for their growth, as they are a new church that will change Athens for the better!  I just know it!

Coming home was a huge blessing.  We felt so good to be in our house again surrounded by those we loved.   I started searching for a small church so that Tim might feel more comfortable.  The day we moved back into our home it was a huge snow storm.  Five men from Faith Bible Church showed up at our door to help.  We had never met any of them in our life!  A friend had told them we needed help and there they were!  It was amazing to see His love poured out to us in such a wonderful way.  I decided to go check out the church these men came from.  We really loved it.  It was small, and yet family oriented.  The teaching was wonderful and very bible based.  We thought we might be home.

Over the past few months I have become much worse.  To see me you might say, "She doesn't look sick?"  But I can assure you I am.  When I wake up in the morning and step out of bed my feet feel broken.  They are literally curled up into a ball and after slowly walking on them they begin to relax.  My legs are cramped and I am completely bent over.  Slowly I can lift my back up and start to walk normal.  My neck and head are completely kinked and my arms are normally numb.  I am not saying all this for any other reason than mornings are terrifying.  I am so worried that one morning I will not be able to move.  I kept praying about this and I kept hearing the same thing, "You need your family."  I am so thankful for my mom and dad who jump in when Tim can't.  I knew that they would take the kids to church if I could not.  After missing several weeks of church, because I could just not do it on my own, I went to church with my mom and dad.  It has been a really good experience.  The kids love being with PopPop and Grandma, and it is great for me to have some extra hands.  We have decided that we need family and church to be one now.  This way the kids are at least hearing God's word even when I can't be there.  So St George Byzantine Church has become our new home.

I feel I have a weird view on religion.  From my many travels of church families I have seen one common thread...many people who desperately love their Lord.  They sing different songs, say different prayers, and may even read different interpretations of the Bible...but they all share Christ's love.  I feel I have found a home in all these churches.  I feel blessed by the many relationships and perspectives I have seen.  I am excited to see where God will lead us as a family, and what I will learn in the future.  For now I am thankful He keeps nudging me in the right direction for our family at that time.  I pray that this will not divide me from any of you but reinforce the great love we share!