Nine Years!!

Nine years ago today, with weather EXACTLY like we have today, I was getting ready to marry the man of my dreams.

Some of you may not know the story of "us".

We met in January 2001 in the college & career class at our church. After class that night a group of us went for a bite to eat. I thought he was cute (though his look couldn't really be defined as 'cute' at the time if you knew Jon then) and he apparently thought I was pretty hot stuff. After that, we didn't see each other for another 10 months.

In December 2001 we hung out a few times at our (now) closest friend Tim's house through a mutual girlfriend of mine. After a few times, she let Jon know I was interested and that was his green light!!

He called me on Christmas Eve 2001 and asked if I wanted to grab a bite to eat. We met at Denny's on Rt 30. I remember sitting there and just basically laying out all the rules of our relationship. It felt so relaxed and amazing. I felt like we just KNEW that we would be together forever.

The next day he invited me to go see a movie with Tim & his parents (Wayne & Rebecca Smuck). We saw Kate & Leopold. I thought it was a terribly boring movie -- though honestly I couldn't tell you a single thing about it. All I could think about was this guy sitting next to me who was interested in ME. Could it be for real???

The next day he called again and we went to the Olive Garden for lunch. That lunch would change our lives. Nothing specific happened, but we sat there and we talked about our dreams, our plans for our future...and then we started talking about what we would name our children and how many we wanted to have. Jon had Nevaeh's name picked out before he ever met me :) I love that...and I think about it every time I say her name.

From that day for the next 5 days we were inseparable except when he went home to sleep, which was only for a few short hours.

On New Years Day 2002, Jonathan & I went with my parents to Mary Jane's (diner) and Jonathan asked my parents' blessing to marry me. I think they were both extremely skeptical, but supportive. My dad said "You're not giving her back once you marry her." Jon said "Don't worry, I would NEVER give her back."

A few short days later Jon flew back to Kansas for his next semester of college. Thank goodness for cell phones with unlimited calling time!!! We talked every free minute we had. HOURS. I should pull up those old cell bills and see how many hours we talked.

Then, in February I was able to fly out to see him. I stayed in the female dorms with a friend of his.

On February 28, 2002, while in Kansas, we went on a double date with Jon's friends Nathan & Melissa to, of course, the Olive Garden. Then we went to see the movie John Q. I was all emotional. We left there and Jon had been working at the church as a custodian, and he had to lock up a few rooms after an event (so I thought). We walked through the church together, he checked doors and made sure lights were off. Then he had to go to the bathroom. He made me believe his food wasn't agreeing with him. He was in that bathroom a REALLY long time and there were lots of flushes :)

Then we went in the front entrance to the sanctuary, which was pitch black. Next thing you know, a spotlight shines on the altar and Pachelbel's Canon started playing. We walked to the altar where the box with my ring was, and he proposed.

Come to find out when he was in the bathroom he was putting on a mic and doing a sound check (thus all the flushes) with Nathan who was up in the sound booth. I have the proposal on video thanks to him!

Of course I said yes.

We were married on November 16, 2002, just 11 months after our first date.

So if you missed that timeline =

1/2001 - meet for the first time
12/24/2001 - first date
1/1/2002 - ask parents' permission
2/28/2002 - formal proposal
11/16/2002 - got hitched!

We had a wonderful first year of just us.

In October of 2003 we found out we were pregnant, and on December 10, 2003, found out we were having twins!!

February 7, 2004, is when life took a bit of a different turn, when Jon started having back pain and abdominal pain. From that point life has been nothing like we planned. There have been a lot of tears. There have been a lot of fights. There have been times when I wanted to quit (Jon has NEVER faltered in his commitment to me) because I thought walking away would be easier.

Through 9 years we have moved 8 times before finally moving in our OWN brand new home (which was a journey all its own). We lived on our own in 3 apartments, with Jon's parents twice, and with my parents once while our home was being built. I hope to grow old and die in this house after the journey that was!!!

We have three amazingly smart & beautiful children (who mostly favor their daddy's side of the family). Some days we pray for one more ... most days we can't imagine one more!!!  God has a plan :)

We get to spend a lot of time together given our situation. Some days that's really, really annoying. I mean, it's only human to go crazy being around the same person 24/7, right?! But when I allow myself to step back and thank God for my blessings the way I should, I realize that I truly am VERY blessed to have the time that I do with my husband. Some wives get very little time with their spouses, some have spouses who could care less to spend time with them, and there are those whose spouses are overseas fighting for our freedom.

I am thankful for my husband and the last nine years we have been married.

So to you Jonathan, I say

Happy Anniversary, My Love.

Disappointment, again.

Just a brief update while I break for my lunch today. 

Not a whole lot has changed. 

Jonathan is in a great deal of pain, especially migraines and ringing in his ears.  His PCP says this is "normal" for what he calls concussion syndrome ... and it can last for months, unfortunately. 

Today we received the results of the T-spine MRI that was done last week.  There were no abnormalities, and we are to follow up with Dr. L in six months.  I knew this would happen, but apparently there's nothing I can do to change it.  It upsets me.

So, in the meantime he has an appointment scheduled for endocrinology on 12/2.  I'm not sure what that's for, but we'll see. 

Also, our Senior Pastor is putting in a call to a friend of his who is an internist @ Hershey to see if he will take on Jon's case or can direct us to someone who can maybe help him.  I am very thankful for this and pray that it will help us get some answers.

I still haven't decided what to do about a family doctor.  Quite frankly the thought of it scares me.  Just when I think I know who to get him in with, I hear something about someone else and question it all over again.  I need to just bite the bullet and pick one.  I figure it can't be worse than the one he has!! 

Not much else going on around here.  Sunday was my 32nd birthday -- and it was pretty uneventful, which is good :)  Tomorrow is Jon & my 9th wedding anniversary.  I have so many emotions about this ... that I can't put them into words, but I'll choose one - thankful.  I am very thankful for my husband. 

As far as the kids -- wow.  For about a week now Riley has had energy beyond belief.  He doesn't stop for a second and it's crazy exhausting.  I just want to lock myself in the room and cry half the time, but Jon & I are trying to take shifts and make sure each of us gets a breather when we need it to make it through.

So please continue to pray for Jon's healing, pain relief, and our family.  We love each of you and appreciate all you do!!!

Progress Report

So today we saw the neurologist at Hershey, Dr. L. 

I can't personally say I felt it was a great appointment, but we've been to much worse.

We reviewed what's been going on since he last saw him (office visit in July, but he performed the EMG in August as well). 

He strongly feels that Jon's "acute" problems that he's been dealing with the last 7 months are directly related to the vitamin deficiencies which are a complication from his gastric bypass surgery ('04).  Apparently being deficient in B12 is a pretty nasty thing, and we have zero clue how long he has been deficient. 

The current plan is to have his local doctor, whether that be his family physician or the surgeon or someone new, maintain treatment for the vitamins.  However, Dr. L wants to do an MRI of his T-spine (the middle), which we don't see in the records has ever been done.  He is looking to see if there is visible spinal cord damage (could be from the B12 deficiency) or anything really. 

Dr. L says Hershey's MRI machines are better than here in York (don't doubt that), so he said it needs to be done there.  It's a drive, and I truly despise driving (I was on the road I think about 5 hours today total.  ick) but it could be much worse.  Thankfully, they were able to get him an appointment for Monday, the 7th, at 4:45!!  So we should know results of that maybe within a week.  Good news.

The part that frustrates me, though I won't call it 'bad news' is this.  At this point he isn't scheduled to return to Dr. L until 6 months.  Obviously that can change based on any findings on the MRI...but my fear is if nothing is found, he just endures this pain every day and nothing progresses.  This part angers me.  I was crying, begging the doctor to DO something.  ANYTHING.  He kindly listened and tried to reassure me that he was doing everything he could.  I grumbled in my heart "well, it's not enough".   I sputtered through tears and said this is EVERY DAY LIFE for us.  We leave here today, say the MRI is normal and we don't see you for six months, and yet every. single. day. we face this.  He said unfortunately there's a shortage of neurologists, which makes things even more difficult.  Did you know this?  I didn't.  On the other hand, he said it doesn't do any good to come see him every so many weeks just to say the same things.  Um, my point exactly!!!   Let's do something! 

Ugh.  So at this point all we can do is get the MRI and pray for some answers.

Secondly, tomorrow morning Jon goes to Dr. G (who did his surgery) to get a B12 injection.  They weren't very clear on a long term plan.  I intend to make them GET clear on the plan. 

I want to know how often they intend to check his levels, how often he's going to receive injections (I've heard people getting them weekly for long term), and who they can refer him to for help monitoring for the rest of his life, since obviously this will be an issue to keep a close eye on ... forever.

Lastly in the plan, my mother & I are going to work on finding some good vitamin supplements to boost those levels...rather than pills.  She's a big vitamin guru, but we need to find affordable options.  Not that I put a price on Jon's health, but we don't have a money tree either. 

So...that's the update.

On a fun note, as of 8:00 in the morning when we get the girls on the bus, Jon & I will have a weekend to ourselves until Sunday evening.  Last year for Christmas my mother gave us a gift certificate for a one night stay at a B&B in Lancaster, plus a Shady Maple gift card (yum!).  She also keeps the kids!  We'll be using that and exploring around Lancaster & Lititz and just enjoying our time together.  I'm looking forward to the peace, quiet, and just ... being. 

You have a degree in what exactly?

About two weeks ago I was pulling my hair out trying to figure out what step to take next with Jon's healthcare.  I feel like we've hit another wall.  It's nothing new.  We're used to it.  But it's always painfully frustrating to get past. 

He's been in this condition for 7 months now.  Given his history over the last seven years (he first got sick on February 11, '04), there are seasons of good and seasons of not-so-good with how he feels.  This has been the longest season of not-so-good since he first was sick.  At this point we've tried to come to grips with the fact that this just may be his new 'normal'.  Not that we're accepting it and just ignoring it . . . we're still very much looking for the right doctor and treatment and praying every day for healing.  However, when you deal with something for so long, you learn to cope.  We've finally gotten past the initial 'trauma' of the situation and we're learning how to make life work with the limitations.  It still sucks.  Jon is still sick.  It's still a daily mountain to overcome.

Now, back to that wall.  I started thinking, what doctor can we try next?  We feel the need to search for a new family physician, as Jon's current one seems to be somewhat "exhausted" with Jon's situation.  I'm not saying he doesn't care, but he just isn't motivated, shall we say, to find a solution as much as we need him to be.  So, in thinking about the problems he has been having with his Vitamin D levels, I was googling the relation to this and gastric bypass patients.  Wow.  It was an eye opener. . .and made me think I needed to place a call to his surgeon.  So I did.  I told them the history since he was last seen, and they got him in the very next day.  (coincidence?  I think not). 

Sadly, that appointment was not as fruitful as I would have hoped.  He did a quick check over him, gave him a sheet of vitamins they recommend for bypass patients, ordered some labs, and sent him on his way saying "see you in a year".  A year?  Really?!  Nice. 

So fast forward to today, about 2 weeks later.  They haven't called with his lab results.  One would assume they were within normal range if a doctor didn't call, right?  Or maybe yet again we feel like they just don't care about Jon.  Why is that?  Does he have a black mark on him or something?  I mean really...the treatment he receives (or shall I say lack of) just baffles me.  ANGERS me.  Would these doctors respond the same if this was their family member?  Their child?  Their spouse?  Their parent?  I doubt it.  I want to scream that at them every time I feel they aren't doing anything (which is pretty much always).   Whoa -- off the rant.  Back to my point.  So tomorrow Jon has an appointment with Hershey Neurology.  I have zero expectations of the appointment.  I don't mean I don't think anything will happen, I mean I have no clue what the plan is.  It's a 'follow up'...or continuing care visit or whatever.  But I have no clue what the doctor is thinking or what his next step is.  Frustrating.  Again.  So, I was thinking this morning, you know Hershey is going to want to know those lab results.  So I had Jon call the surgeon to get them. 

Wow.

So way back in August when the neurologist thought Jon's falling, memory loss, and pain issues could be due to a vitamin deficiency - his Vitamin D was originally 18.  I don't remember what the B12 was, but Jon says it was in the 200's. 

He was put on 50,000 i.u. pill of Vitamin D per week, PLUS 3,000 i.u. daily.  That's 71,000 i.u. of Vit D per week.   It was then checked about 8 weeks after he started this regiment, and it was unchanged.  Exactly 18 again.  So they increased the 50,000  i.u. pill to twice a week, discontinue the daily pills.  So 100,000 i.u. of Vitamin D per week.  His number today = 14.  Say what?  Yes, it decreased. 

Now to the Vitamin B12.  Like I said, I'm unclear what the number was exactly before, but somewhere in the 200's we'll say.  He's been taking 1,000 mcg of B12 per day for almost 3 months now.  His number today = 178.  Yes, also decreased. 

So I ask Jon what their solution is.  Are you ready?

As far as the Vitamin D - nothing.  They have zero solution.  Just keep taking the pills.  What. the. - I'll bite my tongue on that one. 

The B12, he is to increase to two pills a day (total of 2,000 mcg/day), and he will go in for a 'one time' shot of B12 on Friday morning.

I. am. livid.  If I could make this computer type words with flames flying out of them, I would.  Seriously people?  OBVIOUSLY HE HAS AN ABSORPTION PROBLEM.  Oh, so let's just pump him full of more pills. 

I am angry.  Very angry.  And sad.  I want to cry until I can't cry anymore.  No matter how many times I am disappointed and hear frustrating news, every single time it makes me want to cry buckets of tears.  I am in so much pain emotionally I don't know where to go with it.  I'm tired of it.  WHY?  What is wrong with healthcare professionals today?  Are we really picking all the WRONG ones?  If I were a physician, I would take personal pride and self worth and accomplishment in taking on a patient and working my very hardest to find a cure or at least HELP the person live a more fulfilling and satisfying life.  Seriously, you can't even comprehend what it's like.  These doctors look us in the face and say "I don't know" and send you on your way, pocketing gobs of copays in the meantime.  *insert angry face*

So, tomorrow we go to Hershey.  I feel physically sick to my stomach.  I try SO hard not to get my hopes up or have expectations that are too high, but even with ZERO expectations, it's a hard blow when you have no solution.

So please just continue to pray.  I know, you are.  And I count every prayer as a blessing, because I know it's what has kept ME going, and kept Jon going, and kept our marriage and family together. 

Pumpkins Galore

Last week at Riley's preschool fall festival was the first time I had ever carved a pumpkin.  It had always seemed, I don't know, boring?  I guess it just never really appealed to me.  Until I tried it.  I thought it was so much fun!  Pumpkins were sparse at this point in the season, so the stop I made at Whitcombs (close to home) didn't produce very big pumpkins for us to carve, but we had fun anyway.  I can't wait until October next year - we're going to get big huge ones and lots of 'em and carve them :)

 Sarah's

 Natalie's

 Nevaeh's

 Riley's (done by me)