Monday, December 19, 2011

I'm officially a charity case...

It has come to this! I am officially a charity case and raising money for our family. Here's the deal:

1.  As most of you know, I have a disabling disease.  I cannot be upright for long before passing out.  I can't even sit with my legs down in a car, because the blood pools in my legs/feet, and my heart rate and blood pressure go nuts and I pass out.  My disease is in a pretty severe state right now.  So - I use a reclining wheelchair to get around the house. Most of my day is spent with my legs up in a bed caring for my new daughter, and on my laptop while she naps. 

2. Because of this, I go everywhere by medical transport.  So everywhere is to doctors appointments, because that is the only way I can get out of the house and be driven around - is on a stretcher.  Luckily insurance pays for this right now, but for how much longer is not certain.  They will not pay for me to go anywhere other than the doctor.  There are no volunteer organizations for this type of transport, we have searched high and low.  I am working hard with my Physical Therapist to get down the stairs leading out of my building, and expect to be able to do this within the next few weeks/months.  Until then, its by ambulance down the stairs and out on a stretcher.

3. Once I'm out of our apartment, I can get in my wheelchair with help. But we have no transportation for me and my huge wheelchair, let alone my entire family (husband, 3 year old son, 3 month old daughter).  We have a Mazda 3 hatchback with barely enough room for both car-seats, and no way for me to recline the seat and prop my feet up in the front seat.  So a friend said, "you should look into a Sienna or an Odyssey, the seats fold down so they are almost flat". So I did.

4. And now, the unthinkable has happened....I am in LOVE with those minivan!  It is perfectly suited to fit all of us and our equipment. The seats fold down, there is storage room, and even room for our dogs if we get to a point where I can travel. I hope that happens soon.

5. The problem: we are now surviving on a teachers salary.  I had to close my business when I went into the hospital last January (of 2011), and needless to say, times have been tough. We can not trade in our current car and buy this van for financial reasons.  Vans are not cheap.  So another friend suggested we start a fund.   This is very humbling for me, as I used to give to causes and enjoyed helping others.  Well, I guess after being as sick as I have for this entire past year, and with no end in sight, I am now accepting that we need some help. 

So, if you feel inclined to do so, we have started a fund to raise money for a van.  We are looking to buy a used Sienna, and any funds donated will go directly to the van (there is a small fee to the site hosting the fund), and nothing else. I have to travel to Vanderbilt University in Tennessee from Norfolk, VA in July for testing and treatment, and would love to have it by then, as insurance has given us a definite NO on coverage for Medical Transport for a 12 hour trip.  This may be wishful thinking, but we have nothing to lose by trying. 

You can donate through EverRibbon, my page is here, and my ribbon is purple (big surprise):

A Van For Claire

Thank you!  You can read more about my condition(s) at It's called POTS (Postural Orthostatic Tachycardia Syndrome), and they now think I may have this other weird disease called MCAD (Mast Cell Activation Disorder) and a bunch of other wacky stuff I need to be tested for.


1 comment:

  1. Janel Ingoglia HouchensDecember 20, 2011 at 4:00 PM

    Hi Claire, my name is Janel (Ingoglia) Houchens. Kathie is my SIL and i've known your dad/family since M & K got married years back.
    My heart & prayers go out to you and I will certainly make a donation & pray that you DO get your mini van.
    Best Wishes,
    Janel (Jan) Houchens / Gainesville, Florida