September 13, 2011

the paint project

A lot of times, especially on this little blog of mine, I feel like I am all talk and little action. That can easily be the case with three little ones and a tight budget. So I'm okay with that. This blog is a nice place to dream about beautiful things anyhow. But right now I am putting together a project that requires a lot of action. A project that is very special to me. {nope this isn't the secret project...I'm still trying to patiently wait for that one too} More important than that to do list of projects for my home.

My dear friend Mary, who just so happens to be the most amazing woman I know, has had a hard year. A year that we are lucky she is getting through. She and her family moved into a bank owned home that needs a little love earlier this year. She was sick but still working and they were getting by. With plans of fixing up their home along the way. When her health turned for the worse plans changed rather quickly. And she will not be able to ever return to work again.

I have wanted to help them in some way get through this time but wasn't exactly sure what I could do. I knew having her home painted was high on the list of what they wanted. Well deserved with lots of maroon walls! And I thought to myself that I couldn't afford to do that on my own. So I nominated them for a Nate Berkus makeover. Great plan except for the thousands of other requests he must get everyday. So when that long shot didn't pan out my wheels started turning and I came up with The Paint Project. 

 {i have not one photoshop skill....}

Some of you readers know Mary and most probably do not. So I wasn't sure if I should bring it up here or not. But, ultimately I know this is a good cause and extra prayers for this family could not hurt anyone. The plan is to paint the interior of the family's home with as many helpers as we can on Saturday, September 24th. We are hoping to get a few donations for paint and supplies as well. Even the smallest amount will help. Or maybe you want to send us some pizzas. Or maybe you cannot afford to pitch in or be there that day. Honestly prayers are just as important. 

I told Mary about the project and asked only that she write about her condition because I don't remember the exact words and wanted to tell her story right. So in her words:

I was diagnosed with Systemic Lupus at age 16 in 1997. I had a large lump on the side of my neck and could hardly move due to stiff joints. I just thought I was getting old, yet my mom knew better. She took me to many different doctors for about a year and a half before diagnosis in Salt Lake City. At that time I underwent 6 months of Chemotherapy Cytoxin which my body responded to very well and went into remission. In 1999, at age 18 and 3 months after Robby and I were married I had a second flare. The symptoms of this flare were different. The Lupus attacked my kidneys and I swelled with 40 pounds of edema. At that time I underwent Chemotherapy Cytoxin again for 6 months and again went into a remission. My Lupus was held under control until we moved to Boise in December of 2005. At that time a flare began, but was thwarted with medication before it became severe yet never went into full remission.

     My condition gradually became worse as I finished my degree and this year in March decided to rage into a full flare once again attacking my kidneys bringing function down to 11%. Unfortunately, twice is the effective number of chemotherapy treatments for flares and over time there have been new drugs introduced to treat flares. So I began a regimen of Cellcept (which I had taken previously) and Prograph - a new immuno-suppresant. This combination along with Prednisone worked well on my condition bringing my kidney function up. However, the new medication Prograph was not agreeing with my body and my blood pressure was rising. Apparently it got too high one night, all I remember was going to bed and then waking up in the hospital 4 days later. I had seizures due to high blood pressure due to TTP.

     What had happened was a disease called TTP had developed from the medication and attacked my blood causing my platelets to drop to 2300. (Normal is 150,000 to 400,000). Just touching me caused a large purple bruise. Totall plasma exchange of 17 units a day for 25 days with as much plasma as they could find in the region and my platelets still only rose to 7500. Two varieties of chemo were started as well as hemodialysis and after 30 days in the hospital they sent me home. Within the first week home my platelets rose over 100,000, yet would not hold. A splenectomy was ordered and that did the trick. My platelet count is now very normal and my blood is well and fine. When the TTP hit, the lupus medication was taken away and the Lupus raged on in my kidneys. So now, at the present point, my kidney function remains low and we are in talks of dialysis and transplant. Lupus is a rough disease, yet it could be worse and I feel so very blessed to have the support of so many friends and family members. I can't even begin to describe the love I feel for everyone and for my Heavenly Father for allowing me to still be here to be a mother and wife.
Thanks so much to Amber for putting this together. it means more than words can say. I love our humble home and am very excited for this project.

She truly is a remarkable woman that I am so thankful to call my friend. If you are interested in helping with our project please email me. I can answer questions or give you more information if needed.

Thank you dear readers!

1 comment:

  1. We love you Mary! Wish we were there to come paint with you. Thanks for putting this together Amber.


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