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!