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!