This week has been a little worse pain wise. I notice that my sleep affects my pain and when I’m in more pain I don’t sleep as well. This week was one of those weeks. I’m not sure if its the wacky weather we have had here in Chicago or if it’s the 2 children I now have in my life or my husbands crazy work hours but this week my head hurts. And even though acupuncture helped a lot yesterday and alleviated the pain - around 11 PM last night it came back. Monday it hurt so bad on the opposite side of the lesion (so it must have been a migraine) I took one of my last few prescription pain meds.
I’ve written before about how I’ve avoided obtaining a script from the Neurologist because I prefer to keep my liver as healthy as possible but this week I thought about calling and asking for a refill. But then I’d have to explain my non-compliance with my other medication and I just don’t want to be a bad patient. Because really if I were taking the other medications there is a chance my head wouldn’t hurt. (See the cyclic thinking going on here?) And why haven’t I taken the others? Because I’m not yet ready for the side effects. And I dealt with this pain for nearly 2 years what’s another week? Any anyways it might just be my lack of sleep and my neck hurting which has nothing to do with the neurosarcoid. I think. I’m pretty sure. But really I’m too tired to care today.
And since I feel bad that this is kind of a downer of a post I have lost another pound which is 1 per week at least since the kids have been here. :)
Next week I'd like to do a Question roundtable. So send me your questions that you have for me - about whatever....
Thursday, February 24, 2011
Tuesday, February 15, 2011
Today sadness crept in and settled right back on my heart. My co-worker’s father passed over the weekend after a brief battle with pancreatic cancer. I walked into the office this morning and quietly went to my desk as I watched her and my Mom hug. It was a hug of understanding the same as the other person. In this case the loss of a parent. I wanted to give them the privacy they needed. I also couldn’t watch.
I have my moments of sadness and tears alone, usually on the way home from work when I have 30 minutes to myself in the car. This was the case yesterday after I called my Grandpa to wish him a Happy Valentine’s Day. So sad for him that his love of 53 years was not there. Trying to remember if last year I called my Grandma. Missing her immensely as she would have loved having the kids around. But as I picture this I picture her before she got sick when she looked like herself.
Then shortly after I got to my desk and settled in I found out my favorite patient had passed. He was battling bladder cancer and over the past year I’ve watched as he had his bladder removed and struggled with chemo and pain. He was a sweet man who was always nice to the staff. He always had a few minutes of his time that turned out to be so limited. During one particularly good week he came in all smiles with a bottle of wine for me. It brought tears to my eyes. Here was this incredibly sick man who somehow had the time to not only think of me but go out of his way to let me know that he appreciated me. Perhaps part of me hoped he would make it through what my Grandma couldn’t. That perhaps cancer wouldn’t rob another family of their grandparent too soon. But it did. And I sat at my desk and cried.
I have my moments of sadness and tears alone, usually on the way home from work when I have 30 minutes to myself in the car. This was the case yesterday after I called my Grandpa to wish him a Happy Valentine’s Day. So sad for him that his love of 53 years was not there. Trying to remember if last year I called my Grandma. Missing her immensely as she would have loved having the kids around. But as I picture this I picture her before she got sick when she looked like herself.
Then shortly after I got to my desk and settled in I found out my favorite patient had passed. He was battling bladder cancer and over the past year I’ve watched as he had his bladder removed and struggled with chemo and pain. He was a sweet man who was always nice to the staff. He always had a few minutes of his time that turned out to be so limited. During one particularly good week he came in all smiles with a bottle of wine for me. It brought tears to my eyes. Here was this incredibly sick man who somehow had the time to not only think of me but go out of his way to let me know that he appreciated me. Perhaps part of me hoped he would make it through what my Grandma couldn’t. That perhaps cancer wouldn’t rob another family of their grandparent too soon. But it did. And I sat at my desk and cried.
Friday, February 11, 2011
KISSING Contest
Did you miss attending the 2011 KISS event in Chicago?
Would you like to donate in a fun way to the only private foundation helping find a cure for this disease?
Then go here to buy a Virtual Kiss for $25. What a great way to support the cause in honor of Valentines Day. You can make a dedication, leave it anonymously, or write a sweet note. The goal is to sell $200 of these on-line to raise another $5000 for research and patient programs.
Or alternately go to my Mary Kay website and purchase a any lip product and I will donate 100% the profits to the Foundation for Sarcoidosis Research. Just put Kiss in the customer comments section.
Every dollar counts!
Would you like to donate in a fun way to the only private foundation helping find a cure for this disease?
Then go here to buy a Virtual Kiss for $25. What a great way to support the cause in honor of Valentines Day. You can make a dedication, leave it anonymously, or write a sweet note. The goal is to sell $200 of these on-line to raise another $5000 for research and patient programs.
Or alternately go to my Mary Kay website and purchase a any lip product and I will donate 100% the profits to the Foundation for Sarcoidosis Research. Just put Kiss in the customer comments section.
Every dollar counts!
Tuesday, February 8, 2011
"Mommy what happened to you head?"
This week is Sarcoidosis awareness week which was kicked off this past Saturday at the 11th annual K.I.S.S. (Kick in to Stop Sarcoidosis) event thrown by the Foundation for Sarcoidosis Research. Its always a fun time with great music, plenty of top shelf liquor (Grey Goose is usually a sponser) and fun activities like a silent auction, wine roulette, and photo booth. One of the most fun activities is the Kissino where attendees buy chips and play blackjack and craps in order to cash them in for raffle prizes. This year we even had a all female KISS cover band called Slutter (costumes and everything). The people watching is always fun too as you have people from all walks of life attending the event.
Herbie and I have been going almost every year for the past 7 years. Dealing blackjack and helping with the silent auctions and raffles. We were able to help raise an additional $600 by donating a weekend at our timeshare which was kind of exciting for us. This year however was the first year that we had to find a babysitter.
Saturday I had gone to get my hair cut and colored because at 29 the hair that I have that is changing colors is not just gray but stark white and I was starting to blind myself. My son had not seen me prior to me descending the stairs in my party dress, full make-up (he hadn't seen me in any. Ever.) and my new do. As I picked him up to say goodbye he looked into my eyes and said, "Mommy? What happened to you head?" as he patted my hair.
Oh sweetheart you have no idea how loaded that question is! Or how many times I knew I would be explaining it that night. Of course I told him I got my hair cut and he seemed to accept this answer as he wiggled down to go play. But for the adults that asked why I was a volunteer at the event (and in away asked me what happened to my head) my answer was a little longer but probably just as simple. I volunteer because something happened to my head (and lungs)and this foundation is the only one that had information to help me. And my time pails in comparison to the generosity of the people who support the foundation and support the goal to find a cure (and a cause) for this disease. This wretched, dibilitating disease that makes people become candidates for lung transplants and pace makers, and robs them of their abilities and their lives. So I do what I can so that perhaps I will not be listed amongst those from whom so much has been stolen.
While Sarcoidosis has been a royal pain to have, I do need to also recognize that it has given me much. For example the moment with my son. And while he may not be my son beyond this year he is a light in my life. As is his sister. Neither of them would be in our lives if Sarcoidosis hadn't shown up too because we probably would not have traveled down this path of foster parenthood.
Herbie and I have been going almost every year for the past 7 years. Dealing blackjack and helping with the silent auctions and raffles. We were able to help raise an additional $600 by donating a weekend at our timeshare which was kind of exciting for us. This year however was the first year that we had to find a babysitter.
Saturday I had gone to get my hair cut and colored because at 29 the hair that I have that is changing colors is not just gray but stark white and I was starting to blind myself. My son had not seen me prior to me descending the stairs in my party dress, full make-up (he hadn't seen me in any. Ever.) and my new do. As I picked him up to say goodbye he looked into my eyes and said, "Mommy? What happened to you head?" as he patted my hair.
Oh sweetheart you have no idea how loaded that question is! Or how many times I knew I would be explaining it that night. Of course I told him I got my hair cut and he seemed to accept this answer as he wiggled down to go play. But for the adults that asked why I was a volunteer at the event (and in away asked me what happened to my head) my answer was a little longer but probably just as simple. I volunteer because something happened to my head (and lungs)and this foundation is the only one that had information to help me. And my time pails in comparison to the generosity of the people who support the foundation and support the goal to find a cure (and a cause) for this disease. This wretched, dibilitating disease that makes people become candidates for lung transplants and pace makers, and robs them of their abilities and their lives. So I do what I can so that perhaps I will not be listed amongst those from whom so much has been stolen.
While Sarcoidosis has been a royal pain to have, I do need to also recognize that it has given me much. For example the moment with my son. And while he may not be my son beyond this year he is a light in my life. As is his sister. Neither of them would be in our lives if Sarcoidosis hadn't shown up too because we probably would not have traveled down this path of foster parenthood.
Friday, February 4, 2011
10 Hail Marys
So I have a confession to make. I've been writing 2 blogs. This one - about my journey to health and another about my journey to motherhood. But as my life has drastically changed in the last two weeks I felt it was time to come clean to whomever stumbles across this blog as I haven't been writing here as much. I was feeling guilty.
I'm still struggling with the decision to share this other blog with those who read Rhi-Storing as a lot of what I will write about is confidential and I write it anonymously. This blog is not. The reason the other one is anonymous and confidential is that my husband and I have decided to pursue adoption through foster care. It was a big decision and one 6 months in the making from inquiring to actual placement.
Since now we have 2 children in our lives I'm sure they will find their way here. Especially since I'm getting over an awful cold - which I blame on the fact that my immune system walked into an elementary school LOL!
I haven't had as much time to write and ponder as for the last 2 weeks I've been trying to settle in a 7 year old girl and 3 1/2 year old boy into our previously childless home. they are really awesome kids and I'm loving every minute of my crash course in motherhood.
I'm still struggling with the decision to share this other blog with those who read Rhi-Storing as a lot of what I will write about is confidential and I write it anonymously. This blog is not. The reason the other one is anonymous and confidential is that my husband and I have decided to pursue adoption through foster care. It was a big decision and one 6 months in the making from inquiring to actual placement.
Since now we have 2 children in our lives I'm sure they will find their way here. Especially since I'm getting over an awful cold - which I blame on the fact that my immune system walked into an elementary school LOL!
I haven't had as much time to write and ponder as for the last 2 weeks I've been trying to settle in a 7 year old girl and 3 1/2 year old boy into our previously childless home. they are really awesome kids and I'm loving every minute of my crash course in motherhood.
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