How the diagnosis of an autoimmune immune deficiency disease filled me with more Grace
than I ever imagined and how I am now living in that Grace each day.

Sunday, October 7, 2012

ODP12 Interruptus

Whenever I start an awesome project, I expect some interference. I went into the October Dress Project this year thinking I would be too tired to do laundry, that I would be sick with this whole spleen/mono thing and wouldn't be able to keep up the way I wanted to, or that I just wouldn't get out of bed and get dressed. But I wanted to do it for several reasons.

  • 1) I had SO MUCH FUN last year doing the project!
  • 2) Especially this year, I knew that not thinking about what to wear would be a bonus, even if I just threw on the same sweater every day. 
  • 3) I was hoping to show people, through my daily blog posts, what it is like to live with a chronic illness that causes me to to visit WAY too many doctors during a week than anybody ever should.
  • 4) I wanted to again remind my children that WE. HAVE. TOO. MUCH. STUFF!

Day 1 went off without a hitch! Day 2 began what I will refer to as "The Beginning of The End". Last week, I had a little one home with a fever and a stomach ache. We went to the doctor, and he was diagnosed with "a virus".
(As an aside, I am NEVER one to complain about wasting a copay to find out that my child ONLY has a Virus. I have had too many times where I find out that a child has a fever and then receives a scary diagnosis. Even Katie ended up having a "virus" that turned out to be a ruptured appendix. So I never mind paying for peace of mind.)

As we got settled in at home with some natural soda, popsicles, a movie and heating pad for my blasted spleen, I got a phone call. My Dad was having so much pain that the Home Healthcare Nurse was suggesting that he go to the ER to find out what was going on. He couldn't stand up, and they couldn't change his dressing.

Because I had fever boy at home, and was already feeling worn out, sick and nearing the end of an infusion cycle, we decided that I would stay home until they figured something out. He had just been there a few days ago, so we weren't expecting anything. 4 hours later, I received a call and my dad was on the other end. He said, "Do you know what it means to have a M A S S?" (this he spelled out). I tried to hold it together and we discussed that we would wait to hear from the doctor when he read the report in the morning. They were admitting him until that time, but the ER doctor was certain that something was going on with his spine.

Cliff note version: My dad has cancer. It gives me chills to type this. Because it was in his bones and 2 of his vertebrae were crumbling, they know it's stage IV. A CT on Wednesday showed that he has lesions in every organ in his body. Based on a mass that the doctor found, he is pretty certain it started in his lungs. My Dad is 70 years old, and no treatment will cure him. So we have decided together that we are going to keep him as comfortable as possible, bring the kids in to visit, and spend as much time with him during the time he has left.

Did I mention that Wednesday was my Anniversary? And I had an inflammation in my foot that had me hobbling to my doctor that same day and then going to the hospital for an ultrasound to rule out a blood clot? Thankfully, it was negative, but I did get to pop in to see Dad both before and after my procedure.

I almost threw in the "dress" on Thursday. But then I thought that I would have to think about what to wear, as well as all the other decisions that I have to make. And I had to be at the Children's Hospital at 7:30am for a gastro appointment with Topher so I didn't want to think about what to wear. I decided that this was a wonderful blessing the Lord has given me this year: One less Decision.

Please keep my family in your prayers. Please pray for my Dad. Please pray for his salvation. I was gone for 24 hours on Saturday to celebrate my Anniversary and he declined. (another aside: His doctor ROCKS!! I wasn't sure if we should go, and he was adamant that Dad wanted me to get away, and he wanted me to have time alone with my husband before we had some serious decisions to make. He also said, "You have a horrible disease, and if you were my patient, I would want you to be rested up before your next infusion and before you start this next phase. So get some rest, and some time with your husband." Another blessing in the midst of this trial.) I am worn out. 

So here are my pictures for Days 2-7.

Day 2: Dress, Gray Target sweater (4 years old), new silk scarf (gift from my friend/hairdresser Monique), OLD black Dansko sandals. (Took Topher to pediatrician, got my hair cut)

Day 3: Dress, purple pashmina gift from my Mom last year, favorite silver opal earrings, 
purple Alegria sandals, Lily Kate who kept jumping on me. Went to my doctor, had ultrasound of leg to rule out blood clot, visited Dad, felt guilty for leaving Topher with friend most of the day.
Day 4: Dress, super soft brown 3/4 sleeve cardigan, gold CZ earrings (gift when Topher was born), Bronze Alegria sandals. Taken at Children's Hospital gastroenterology department. Spent 3 hours there with Topher in the morning. Then came home and put on jammies and cuddled together. 

Day 5: Dress, purple ruffle scarf (gift from a friend), Zebra ribbon CVID awareness hat (Petal Chic Boutique, selected Zebra ribbon at checkout), purple Alegria Sandals (These are my very most favorite shoes right now!)

Day 6: Dress, Ford Warrior In Pink Race Bandana around waist (hubby got it at the Komen Race for the Cure in the morning), cordovan Dansko Clogs for walking at the Renaissance Festival. Sitting with Carl in the Cabriolet to get a ride back to the front because my leg/foot was terribly swollen. But we had a great time celebrating our Anniversary!

Day 7: Dress, black/white stripe sweater (was my Nanny's, has to be at least 10 years old), black tights, Alegria Paloma patent mary janes. Today we went to visit a nursing home where I almost had a meltdown, then the new Whole Foods in Charlotte on our way home. Katie and I visited Grandpa, and when she went to Youth Group I finally had a chance to REST! 

1 comment:

  1. Wow. I can't believe the joy I see on your face in these pictures! Thank you so much for this post, it really encouraged me this morning! I will definitely be praying for you!