Wednesday, April 20, 2011

Random thoughts

Last night as I drifted off to sleep I thought about Granny. For anyone who doesn't know, Granny is Rick's Grandma. She became my Grandma too shortly after Rick and I started dating. We moved in with her shortly after her husband passed away. Granny was a cancer survivor. Breast cancer in the early-mid '90's, colon cancer in 2000 then breast cancer again in 2007. This time the cancer went to her bones. She fought hard for a few years and worked part time until August 2009 when she fell and shattered her elbow. From then on I did my best to take care of her. She did great for a few months but around Christmas she got sick. She was put in the hospital and released then put back in a few times. She knew her time was coming and she was totally at peace with that fact. I can only hope to face death the same way she did. The beginning of August we began to realized how little time we had left. Somehow she broke her clavicle. I think she said she had reached for the TV remot or something. I was up with her all night. Rick and I took her to the doc and we were told the cancer was pretty bad and there was nothing to be done for the break. They couldn't set it or do surgery because her bones were so weak. A week or so later she got up to go to the bathroom and her leg snapped. I called 911 because we couldn't transport her to the hospital. As she was being taken out of the house the kids said goodbye and told her that they loved her. That was the last time they saw her. She passed away on August 21, 2010, exactly 1 week after she fell. And exactly 51 weeks after she fell and shattered her elbow.

  Last night I laid there thinking, it's been almost 8 months since she passed. I've never been back to the cemetery after her service because she made me promise I wouldn't. She told me that there was no point going to a place where she wouldn't be. The night she died we found something she wrote years ago. Basically, it stated the service she wanted and it specifically said do not go to her grave site. That's stuck with me over the last 8 months. Her headstone has been there for months and I have yet to see it. Granny's birthday is coming up and I have thought about going to see the stone. Not because I think she's there because I know she's not. She's here in the house with us daily. I want to see the headstone.

I woke up this morning got myself and the kids ready. I was still thinking about going to the cemetery. I go about my day and my sister tells me that our Grandma has taken a turn for the worse. She's in the advanced stages of Alzheimer's and reinal failure. This isn't anything new to us. We've been told a few times over the last  2 years she's close to death. Sometime between 4-4:30 my mom calls my sister and tells her she's going down to see Grandma. It was decided that she would be taken off all nutritional supplements and we're going to let her go. She's been in and out of a catatonic state for a while and she has no idea what's going on or who anyone is. She never knew my kids. Half the time over the last 15-16 years she didn't know who I was.

8 months ago I was sitting her crying because I was losing my Granny. And tonight I sit here crying because I'm about to lose my Grandma. Technically, she's gone and I've said my goodbyes. I've said for years I wish it was over because the way she's lived for the last few years is no way for ANYONE to live. And to watch someone suffer through that is heartbreaking. I don't wish it upon anyone.

Praying for a peaceful passing for you Grandma. Tell Grandpa I said hi. I love you and I miss you, I'll see you again someday.  

Sunday, April 17, 2011

Kids get Autoimmune arthritis! It's not the kind Grandma has!

Another look at a child's life with juvenile autoimmune arthritis. My J is just one of 300,000 in the US. Emily and Abbie are the other 2 girls in this video. I can't thank their families enough for letting me use their photos.

Thursday, April 14, 2011

"pink jordans 2011"

Within the last week or so there have been several visitors to our blog using Google. They type in the same thing "pink jordans 2011" every time and it brings them to my post about our walk. I don't know why but it's done about 2 times a day from different parts of the country. I'm sure it's a group of people mocking us or a group sitting around criticizing our decision to treat Jordan the way we are. Obviously, they really aren't interested in our story or they would leave comments or contact me. Why stalk my blog? If you aren't hiding, then why not just follow us? I don't get it.

Speaking of pink angels, aren't these cute?! One of the members of our Pink Angels  is a JA survivor. Katie's mom hand painted these pins for us to hand out with every donation of $20 or more. I love the team we have this year. We've got 25 people signed up to walk with us and more signing up soon. I hope everyone follows through. If not, I'm going to have a very unhappy Peanut on my hands. 

Friday, April 8, 2011

Does this happen to you?!

This is something new for me. At least once a day my hands and feet do something weird. They get red, swell and feel like they're on fire. It starts with one finger or toe and spreads to the rest. These episodes last for about 30 minutes. And it hurts. This photo was taken at the beginning of an episode and really doesn't show much. Bub was the only one here with me and snapped the pic real fast.

I emailed my rheumy about it and she said it's RA. She wants me to start back on pred, which I just weaned off of, and we'll adjust my meds again when I see her in June. But if these episodes keep up, I think I'll need to see her sooner. I don't know what else we can adjust. I upped my MTX last month because I wanted off pred. I was feeling good and I thought it was time. I had no idea it was helping so much but I hate the weight gain with pred. Not sure what I'm going to do next.

We spent the day in Ventura with a new friends this past Monday. We met a 3 year old living with JA, her mom and her cousin. Being out there made me realize how much I miss living there. The kids were home. As soon as we opened the doors they both took in a big breath of ocean air and sighed. They miss it as much as I do. We used to pack up and head to the beach to watch the sunset at least once a week. A spur if the moment trip to the pier to fish was also common.

I feel better when I'm out there! I found out that being in the sun isn't a good thing anymore but while we were there I felt amazing. When I go to the beach or plan to be in the sun for any length of time I will be wearing long sleeves and pants. I've had a lot of pain and swelling this week. But it was worth to meet an amazing little girl and to see the kids playing on the beach again.