Donate Life Walk

On Sept 8th the kids and I are going to walk in the 2nd annual CTDN Donate Life Walk.

Last year we walked it with Tin Man.  3 miles.  It took him longer, and he needed more breaks, but he made it.  Even though I was worried about him, and a little annoyed that he wouldn't consider using a wheel chair, I was very proud of him for finishing it. 

We decided to do it at last minute, and didn't do much as far as fundraising for it.

After all was said an done we decided this year we were going to set a goal.  This was supposed to be another family thing.  This year it was supposed to be the 4 of us celebrating Tin Man's transplant.

Instead this year its the kids and I walking in honor of Tin Man and his donor.  We set a goal of $1000, but since we've been on vacation all summer and not really doing much as far as fundraising, we'll settle for $500.

We've already raised $200.

I've had a few leave comments and emails asking how they can donate.

To donate you can go to my donation page.  Even as little a $5 will help.

Please share my blog post with your friends and family. 

This is Tin Man and the kids from last year's walk.

Broken Laptop, New Year, and Gift Cards

I finally have a chance to sit down and type out a full entry.  My in-laws were here this last week, so most of the time was spent off doing things with them.
I've had several people email me wanting to know how they can help without having to go through HelpHopeLive.  I have the donate button on the page if you'd like to donate to that, or you could donate gas cards or grocery cards.  Tin Man gets his meds from Walmart because they are so much cheaper there than anything here in town, so Walmart cards to use towards the medicines would be a huge help.  Please if you're interested, email me at EverydayMorning@gmail and I'll get you more info.

So the day after Christmas I got up and turned my laptop on only to find its not working.  I think my hard drive went out, but not for sure.  I shipped it out today so hopefully they can fix it in a hurry.  I'm lost without my laptop and no matter what Tin Man says, his laptop just isn't the same.

Our Christmas and New Year was good.  Just glad all the holidays are over.  Hopefully by this coming Christmas Tin Man will have gotten his new heart and I'll be able to enjoy the holidays again.

I have many hopes for this new year.  Obviously the main one being Tin Man getting his transplant, but I have some for myself as well.  The biggest one is getting healthy and losing this nasty weight.  Sugar Peas got The Black Eyed Peas Experience and dancing with her kicked my butt.  We've been doing 3 songs every night since Christmas.  I decide I'm going to get her Just Dance, Just Dance 2, and Just Dance 3. For myself I'm going to check out Gold's Gym Dance Workout.

Doing the dancing is fun once you get the hang of it, plus it gets my heart rate up, and doesn't feel like exercising. 

We're also looking into getting a treadmill.  He's supposed to walk every day, but between living in a very hilly town and him not able to handle the hills and the weather, he doesn't to out to walk like he's supposed to.  The treadmill will let him walk at his pace and on flat ground.

Hopefully everyone had a safe and happy New Years! 

Where Are You Now?

When Tin Man first got sick our friends were there to help us.  They watched the kids, brought us dinners, and even went grocery shopping for us.

When the doctors decided Tin Man needed the heart transplant sooner than later, again our friends were there asking what they could do.  When the social worker told us we needed to start fundraising, they were there and told us that they would do whatever we needed them to do.

There were 2 friends that told us they would step up and name themselves our fundraising coordinators so we wouldn't have to worry about the stress of setting things up.  Plus these 2 friends kept reminding us that they have lived here all their lives and know a lot of people that can help with fundraising.

That was almost 2 years ago.  These 2 really great friends haven't done a damn thing to help us.  Most of the fundraisers we've had Tin Man and I have set up on our own between doctors appointments and hospital stays.

Tin Man and I have talked about doing a car show fundraiser.  Again these 2 people stepped up and said they knew just who to call.  They have yet to call them. 

It makes me mad because these 2 people play on this.  They make sure people know that they have watched our kids while Tin Man was in the hospital.  Talk about all the support they have given us.  I am very thankful for them watching the kids, but I wish they would step up like they promised to do in the past. 

We have another set of friends that have stepped up to help us, but they've only lived in the area for a little over a year and don't have the connections these other friends do.  Even with the limited connections, they've still helped us a great deal.  These 2 awesome people have become more like family to us than just friends. 

These 2 awesome people even tried to see if they could set up a fundraising committee with these other people, and were blown off.  Excuses were made as to why we all couldn't have dinner together. 

Even without these 2 so called friends, we've come up with a few fundraising ideas that we're working out the final touches on.  Nov/Dec/Jan are rough times for fundraising because of the holidays, so once February comes we are going to get things moving. 
 

Kids Came Up With a Fundraiser

When all of this first started Warrior really wanted to pretend it wasn't happening.  When Tin Man was in the hospital Warrior just pretended he was back in Southern California visiting his family.  He refused to talk about it.  I finally gave him a journal to write his feelings about anything.  I told him that he could keep the journal private, share it, or burn it in the fireplace.  He chose to burn it because he didn't want to take the chance of anyone reading it. 

In Nov 2010 when the first newspaper article came out he was mortified because people, mainly his friends, wanted to ask him questions about it.  That was until his class decided they wanted to do something to help us.  They designed a quilt.  Each student, the teacher, Sugar Pea, and I got to design a square and then the teacher and her friend quilted it all together.  The kids then raffled it off.  They raised $1500 and were beyond proud of themselves.

All of his friends coming together like that, Warrior started to open up more about what's going on.  Once he started asking us questions, he became more and more interested in knowing what's going on and what to expect.

Now a year later he's doing his graduation project on transplants.  The history of them, the process to being put on the list, and even the wait to get one.  We are waiting on a call back from the transplant coordinator on setting up a meeting with her and with one of the surgeons so Warrior can sit down and interview them.

He's come a long way in just a year and I'm so proud of him.

A couple of weeks ago while we were on our way home from somewhere the kids came up with an idea for a fundraiser.  A kids only art show/sale. 

I thought it was a great idea and immediately starting trying to get more info on it.


Last night Warrior asked me if he could be in charge of it and me just help him when he really needs it. 


I'm so proud of him.  My little man is growing up and into a great person.

Look for more information on the fundraiser.

Why We Fundraise

I'm sure you've noticed the fundraising widget on my sidebar.  Fundraising has become a huge part of our lives the last 18 months.  Even more since I haven't been able to find a job.

I've been a mom for the last 9 years, so I don't have any recent experience in anything.  Plus everyone in the area knows about my husband, and most managers don't want to hire someone that will be gone for 3 months at a moments notice.  Plus jobs in this area are scare to begin with.  Sometimes I feel like a bad mom and wife because I'm not working, but its definitely not for lack of trying.

Up until then I lived in the fantasy that because we have health insurance everything will be fine.  I mean up until then we never had a problem with them.  We paid our deductibles and copays on medicines, and never gave anything a 2nd thought.

Then the list, the LONG list, of things they don't cover, or barely cover, started coming in.

•  During transplant lodging.  Depending on traffic, we live 90 minutes to 2 1/2 hours from the hospital.  Once we get that call, I will be staying near the hospital.  Hotels in that area are $55 + a night.  If all goes well he'll be in the hospital for about 2 weeks before he's discharged.  We know there are some hotels in the area that will help work with us on the prices, but I'd rather plan for the higher prices just to be safe.
• After transplant lodging.  Because we live so far away from the hospital, my husband and I have to live near the hospital after transplant.  This can range anywhere from $20 - $100 a night at the hospital apartments.  We've planned on the $100 a night as a precaution.  I'd rather plan for the worst and hope for the best.  Recently we also found out that we need $300 just to move in.  Our social worker never told us this.  So I'm also wondering what else she hasn't told us.
• Food.  The one thing we have found the last 2 years is there isn't much to eat near the hospital.  You have to drive a good distance to get to get to the semi decent priced restaurants or fast food.  So while he's in the hospital I'll be stuck eating cafeteria food while I'm at the hospital.  I plan on trying to get a hotel room with at least a fridge so I can stock up on food the grocery store.  Plus all the groceries we will need while we live at the hospital apartment afterwards.
• Gas.  Gas for me to get to and from the hospital and hotel while he's in the hospital, and then to get around town after he's released.  During those 3 months we will be making trips back to the clinic several times a week.
• Monthly bills.  Unfortunately during this time, life goes on.  That includes our rent and monthly utilities.  As much as life would be 10 times easier if I didn't have to worry about these for those 3 months, that's not going to happen.  My mother in law is going to come up and stay with our kids, so we can't shut off or suspend the utilities.
• Rejection meds.  After the transplant he will be on a ton of meds to keep his body from rejecting his new heart.  For just 2 of the medicines, our copay is $6000.  Only 2.  We also found out that our insurance only covers $500 a year on name brand medicines.  Thankfully a lot of the meds come in generic form too, but not all.  Then there are some that are over the counter meds, which aren't covered by insurance. 
• Anything else.  I know there's more that I haven't even thought of yet that will eventually slip themselves into my mind to give me yet another thing to stress out about.

That list isn't including the bills we have piled up that our insurance company refuses to pay.  Those come out to $136,000 so far and rising.

When we first sat down with the transplant social worker, we were determined to do this ourselves.  We weren't about to admit to other people that we couldn't handle it financially.

It wasn't until our next sit down with our transplant social worker that we realized we needed to swallow our pride and ask for help.  Being told about the $6000 a month copay for just 2 medicines was a huge wake up call.

Swallowing our pride and admitting that we needed to reach out to people was the hardest thing we had to do.  We had only lived here for a little over a year and didn't know many people in town.  We weren't sure, and were kind of scared, how people would react.  Finally we just took the plunge and contacted the local newspaper.  They ran a story about him, and about our rising medical bills.

After that first article ran, Warrior's 7th grade class decided they wanted to do something to help us.  They designed a quilt that they raffled off.  Each student, plus the Sugar Pea, designed their own little square.  Then the teacher and a friend of hers sewed it together.  They raised almost $1500 with just that one raffle.  We've also had Dining for Dollars nights at different restaurants.

We're still looking for some big fundraisers, and finding people to help us.  When we first started we had a friend tell us that she would be the coordinator so we didn't have to stress about anything.  Only she hasn't helped us with anything.  Always has an excuse why she can't or won't contact local businesses.  So its all fallen on our shoulders, so its been slow.  Between doctors appointments, hospital stays, and trying to give the kids a somewhat normal childhood. 

Unfortunately our need for fundraising isn't going to come to an end any time soon.

Fundraising Fun

The last year we've had to swallow our pride and admit that we need financial help. 2 1/2 years ago we were fine. Then my husband got sick and we had tons of medical bills thrown at us. We've always had insurance, and up until then we never thought twice about what they would or wouldn't cover.

That all changed in July 2009. He got sick and we ended up finding out just how good or bad our insurance really is.

$136,000. That's how much we owe the hospital so far. $128,000 of that is from March 1 - March 8 2010. March 1st he went and had his teeth extracted. (his cardiologists and dentist decided that it was the best thing to do because of bacteria after he has the transplant.) That simple surgery had to be done at the hospital in case he had complications. That simple surgery landed him in the hospital for a week and almost on a ventilator. He handled the surgery no problem, but waking him from the anesthetic caused his heart to freak out.

So now, 18 months later we are still fighting with the insurance company to pay that. They are refusing to pay it because they claim its something that should have been done in a dentist office. So we continue to fight because I don't have that much money lying around.

Plus all of the post transplant medical expenses we will have.

So we had to swallow our pride and admit to ourselves and everyone else that we need help.

This is where the fundraising comes in. We've had several fundraisers between Dining for Dollars at different restaurants and the quilt that Warrior's class made and raffled off.

We have 2 Dining for Dollar fundraisers coming up in the next 2 weeks and several others in the works.

The worst part about this is trying to get people to return phone calls. One of the upcoming fundraisers is at IHOP. We called and had friends calling and the manager never returned phone calls We did this for 2 months. Finally we posted something on IHOP's Facebook page and within a week we had it all set up.

We've also had friends tell us that they want to help, or know this person or that person but then never follow through on anything. Then we've had one person rip us off. $3,000 that he made selling car magnets and took off with. Needless to say that made us rethink a lot of things.

I've been left with having to set most of the things up, but between taking care of my husband, his doctors appointments, the kids and school and their activities, its become a strain on me. Plus we've only lived in this area for 3 years so I'm having to track down the info on who I should call for what. That takes a lot of time and energy. Something of which I am running very low on.

I'll be glad when life returns to normal, whatever that is.