Alarming Wake-up Call....

So if you are having a bad day... this should at least give you a chuckle.  I will fill you in on how Chris and I woke up this morning.

So... Chris' alarm went off at its usually time of 6:00 am, and Chris proceeded to do his usually snooze button action.  This alarm also tells me, "hey its time to take your am medicine."  So I took my pills, went to the bathroom, and then I realized, hmmmm Hannity (the cat) was not begging for food like he usually does.  I walk out to our bedroom and see Hannity next to our door staring at a pair of my ballet flats.  So I quickly went to Chris and asked him if he had already fed him (sometimes the cat wakes us up at 5 am, so we just feed him to keep him quiet).  Anyways, Chris said no.  So I went to go feed him, but noticed he was still starring at my shoe.  Mind you, its 6 am, its cold, and the only light I have on is the illumination from my cell phone.  I figured it was a spider or something but I put my phone down and what do I see in my shoe... sure enough Hannity had caught ANOTHER "Prisoner of War." i.e. a furry, grey mouse was inside my shoe.  Needless to say... I screamed, ran and jumped into bed, while Chris freaked out thinking I had a heart attack or something, yes, I scream bloody murder.

Anyways... turned on the lights.  I proceeded to think the mouse was dead, but nope, our lovely cat brought his POW up here to show us.  Our reward per say.  Anyways, the cat ushered the mouse into the bathroom and then proceeded to flop it into his food dish.  Yes, our cat has quite the sense of humor.  Long story short... Chris caught it with a glass... literally looked like a scene out of Ratatouille, and flung the little mouse out the door.

So... 2 mice in 1 month... we are officially at war.  Fun times, but as some of you know, Chris and I are expert at catching mice.  I think we caught up to 20 in my old apartment (which was within a 6 month time period).  So the battle is officially on.

Thought I'd share our morning adventure.  Hannity has been gloating all morning about capturing is POW.  Quite funny.

Hope everyone has a great day!

Lungs, Cold and IV's... OH MY!

So... a lot has happened since yesterday.  I'll first start off with my lung appointment.  Overall it went fairly well.  Do we have amazingly good news???  No.  But it went as both Chris and I suspected.  What we know is that my ct scan from August 2009 to August 2010 shows that a little more scarring has occurred, this is to be expected considering I didn't start to feel better until this summer aka the medicine started to kick in.  My pulmonary function had increased to 46 from 45.  The lowest it has been was 42 this past February and about a year ago it was around 60.  So you can see the dramatic drop this past year.  The good news is that it hasn't dropped in the past few months, so fingers crossed the medicine has stopped the proceedings of scarring and will eventually lower the inflammation.  We can not reverse what scarring has been done, but we can eliminate the inflammation.  So pretty much what we expected... and the plus side is that I don't have to go back until December :)

Last night, unfortunately I got hit with a cold.  So I am a little down in the dumps.  Not sure cold, or allergies.  Sore throat, stuffy nose = not fun.  So laying low today.

All this leads me to how I'm feeling now. FRUSTRATED!  I got a call this morning for my infusion schedule.  Since I'm on the "urgent" I pretty much have to take what they scheduled.  Which means Monday I go in... not too bad.  The BAD news is that I have to go again on the 18th... the day I was planning to be in Iowa with mom enjoying one of our favorite holidays together.  There was no way to re-schedule.  It's very frustrating when you don't have control over appointments booked for you.  I feel like the months of October and April I need to not plan anything... which is not the way to live your life.  Hopefully I can work something out and go earlier, but needless to say that there were some frustrated tears and a call to Chris complaining... not one of my finer hours.

We've hopefully worked something out.  But needless to say... I'm going to try and schedule my infusions next month for the month of April.  We'll see how that goes.

So that is the quick update.  I have a cold, and I go to the dreaded infusion office on Monday.  My doctor gave me some anxiety medicine so I'm hoping that works well for the 5 hour infusion.  We'll see!  Bye for now... promise the next blog update will be upbeat :)

Off to the woods we go...

So Saturday was AMAZING as Chris' friend Lucas from high school got married to Melissa.  Lucas was a usher in our wedding and I LOVE THESE TWO!  I'm so happy for them.

The wedding was amazing, and definitely up there in one of my favorites.  The wedding was entirely them.  It took place at a state park and was VERY casual, along with a pig roast.  Melissa look so beautiful and Lucas was just precious.  Their vows were amazing and I think everyone in the audience shed a tear during their ceremony.  So happy for them.

It was so great to see the "Burnsville" guys group and their wives/girlfriends.  I was SO SAD though as unfortunately my body gave out before my mind did and it was a VERY uncomfortable ride home.  Between sitting on a wooden bench and standing a lot, this "80 year old body" at about 8 pm had enough.  So Chris and I had to venture on our way home, super sad :(.  Needless to say I crashed into bed and have been "re-cooperating" all day today.  Chris even made me apple cider.

I forgot my camera, so I at least got two pics of the guys together and then Melissa's centerpieces that she made.  They were adorable and I was so impressed by them...



Chris is taking tomorrow off to go with me to my lung appointment.  It'll be the first time we have reviewed my CT scan in over a year.  Unfortunately in the past few weeks I have been coughing a lot more, so I am not looking at this as having "amazing" results.  Looking forward to getting the infusion and then seeing what becomes of my body in the next few months.

As I told Chris today, I'm tired of being tired, but at the same time I'm so fortunate we were able to go to Lucas' wedding as well as attend church this morning.  That is something we weren't able to do 6-7 months ago.  I have to keep telling myself baby steps!

We'll send out a little diddy regarding tomorrow's lung appointment!  Until then...

Something to make you smile...

My sister-in-law hit the nail on the head in regars to helping me de-stress.  I received 100 pics of the recent "Allen girls" outing.  Yes... I am a very proud Aunt.  Their personalities are even cuter then their looks.  Trust me. :)  Enjoy!

Blood Test Results

So quick update after yesterday's rant :)  I got a call from my doctor today and the good news is that the majority of my blood levels are still normal.  The bad news is that my CRP (which indicates inflammation in my lungs typically) has slightly elevated.  If you recall the only time the CRP has shown up normal was last month.  So, I am not allowed to go off prednisone completely, but I do not have to go up.  So we can continue with 2.5 mg. 

She'll continue to keep an eye on my CRP as this is the last thing to get normal, but the first to start to elevate.  I'm hanging in there! :)  as is Chris.  We got the call that she would like to get my infusion going as quickly as possible.  I had already been approved by the foundation to provide funding, but we just need to run it through our insurance and see if they reject again this year.  Either way it is fine for us.  But the good news is that the ball is rolling.

So not necessarily bad news, but not good news either.  We're back to the waiting game! :)  One that we know so very well.

Chris and I will try to keep you all updated in the next few weeks!  Thanks for all your support.

Much love...

Update...

Well... I wish I had better news to share, but unfortunately I don't.  I had a few suspicions the past two weeks that my disease had relapsed, but my doctor confirmed the physical signs yesterday.  I will explain a little bit about the sudden relapse.

These past two weeks have been VERY STRESSFUL for my husband and I due to family issues.  These various issues have been going on for over a year and a half, but came to a striking conclusion this past weekend.  The issue does affect me, but more towards my husband.  It is hard to sit back and watch people be mean to him, and then others not be able to stand up for him.  Quite frankly, it is a vicious cycle.

In this situation I have learned a lot, but one of the main ones is how grateful I am to have my brother.  I know that no matter what, he will always have my back.  My brother and I do not always agree on everything, and we bicker like any other siblings, but I have NEVER doubted his love and affection for me, as well as for Chris.  I'm grateful for the support.

So with that being said, and without divulging too many details.  Every time I talk about the situation, my hands turn blue and I begin to to cough and have trouble breathing.  Yesterday was the first time in 6 months that I had a fever over 100 degrees.  STRESS is a major trigger in my disease.

So unfortunately after progressively getting better I have taken some steps back.  I am waiting for the call regarding my blood tests, but most likely I will have to increase my prednisone and have an infusion of Rituxin ASAP.

So... I have decided, along with Chris, to cut the toxicity out of my life for awhile, along with anything that could remind me of it or trigger thoughts of it.  Pretty much, this was at the request of my doctor.  This is such a crucial stage in my recovery and it's sad that something so petty has affected me.  I wish I couldn't stress about it and that it didn't matter, but unfortunately that is not the case right now.

So I might be taking a somewhat of a hiatus.  We'll try to keep everyone updated, but for now the goal is to de-stress and relax!  Prayers would be much appreciated for Chris and I!

Thanks for all the calls, texts, e-mails, etc. yesterday!  We truly appreciate all of your support.

Anxiety ridden...

So it's 1:40 am on Friday... I can't sleep.  Too much on my mind as of late, as well as the fact that I took a nap this afternoon, I should KNOW better!

My mind and heart are heavy tonight.  Many things have been happening as of late in our lives, A LOT OF GOOD and some little speed bumps.  One of the BIG things going on right now is the fact that I have a TWO HUGE doctor's appointments, one this coming Monday and one the following Monday.  In the next week, Chris and I will learns if 1. I'll be able to go off prednisone and 2. What my lung scarring (fissures is the technical term) is like.  I haven't had a CT scan in about a year, so we'll see what will be most likely permanent and what has the possibility to heal.  My heart is heavy with these two appointments for the main fact that I'm scared.  The question of "Do I have this under control?" will pretty much be answered in the next week.  I feel like I've been sick FOREVER and just want a break from all of the medical stuff.

Which brings me to how I've been feeling... not as hot as I was on previous posts.  My body is slowly starting to tell me... hey its time for another infusion.  In the past week I've been extremely tired... not sleepy tired, but FATIGUED tired.  To top it off, my rashes on my eyes started to show up this week.  BINGO, my disease is starting to be a little active.  Which I expected as I am close to that 6 month mark when I need the infusions.

My anxiety seems to be getting the best of me lately and that's partly due to the medication.  But literally, I'll get nervous, sweat and get sick to my stomach just to go out to eat... yes I am that pathetic right now.

It's times like these I'm thankful I have a VERY understanding husband, and great family and friends to lean on.  I've been SOOOO fortunate as of late as mom has been up twice in the past 2 weeks.  My great friend, Heather and her boyfriend Brian came up to the twin cities for a night and we got to have brunch with them, a phone call from Jess during the week to brighten the evening, dinner with sorority sister Trisha to VENT and just catch up, and last, but not least, phone calls with Molly planning her wedding... even surprise lunch dates tomorrow, since she's up here for her future sister-in-law's bachelorette party.  I'm so grateful to have so many wonderful people in my life.  So for you that I listed and have not listed... thank you.  It helps to soften all of the medical issues.

A lot of people have been asking how things are going for me with Chris starting back part-time to get his MBA at the University of MN.  Well... no worries, all is well on the Hatch front in that department.  We have gotten into a groove, and I know this will only be 3 years.  Plus, he seems to be enjoying his classes, which is great to hear.

Well... that's the update.  Crazy kind of and just a rant, so I apologize for that.  Please say a little prayer Monday for good news... We could use all the prayers we can get.

Still not tired, but will try to fall asleep.  I need to be fresh faced to greet some of my favorite people tomorrow.

Good night, sweet dreams.

Hooray!

Just a quick little update... not only is it beautiful Fall weather up here in Minnesota, but today I was able to fit into a pair of jeans that I haven't been able to fit into for over a year!  I'm still not my normal size, but hey... getting there slowly!  Patience is key!  My face has deflated A LOT and I'm starting to look more like myself!

My eyes are still bothering me and I ended up having to have a trial run of the collagen put into my tear ducts.  So far I haven't noticed much improvement but we'll see!

Hope everyone enjoys the Fall weather and the first football weekend!