I read on facebook tonight that my Confirmation teach passed away this weekend after a long battle with cancer. She was the kind of person that remained always positive even in the face of pain and illness. She taught me to see the good in others and to be tolerant of different view points. She also taught me that seeing a rainbow was prayer enough as long as you were thanking God for the beauty and wonder of it. She was a big reason I worked with the teenagers at church and taught confirmation. She believed in shring what was in your heart and passing it forward. I never knew anyone else that would take on the challenge of a bunch of Youth Ministry kids, a developmentally challenged teen, and a non-believer all in one class.
I've been struggling lately trying to find my place in teh world agian. With all of the changes in my life I'm feeling very unbalanced and as I'm teetering on the edge of some other life changes I feel like I should reach for my faith but I'm not sure how steady it is right now.
I'm fairly angry at God at the moment and I don't really feel like talking to him. Which I of course know is the wrong way to go about it but thats where I am at. I feel like too much was taken this time around and I am having trouble trusting this plan he has for me.
So tonight as I am restless and awake I am saying a pray to find whatever it is that will settle my soul agian. And while I pray for that I pray also for all those who have lost their battles with illness. I pray for all those patients who are just begining and I pray for those like me who are on the front lines trying to come up with a new attack plan for life.
Sunday, March 27, 2011
Wednesday, March 16, 2011
Vacation
I've decided that my new idea of a dream vacation would be a giganitic bed with light tight blinds soothing music Eucalyptus aromatherapy candles burning and big fluffy robe to sleep in. This would be followed by a deep tissue massage and then a pedicure where I will sip blue cocktails with fun umbrellas and fruit in them.
Closer to my reality is the quick dry silver polish and my scented body wash.
But we are going to Disney World in May. And I finally convinced my husband that with our two kids we need to fly vs drive. So at least its a fun break from our lives although I'm not sure how relaxing it will be.
Disney is not a "vacation" in which people meander and rest. It is an all out 7 day marathon of fun. So how does someone like me 1)survive 2)keep up 3)enjoy doing steps 1 & 2.
I think the first thing that I do is PLAN. Lucky for me when we do Disney we go with my husband's family and they are not planners and take little issue with my NEED to plan. Of course I did get some resistence to an actual schedule and touring plan to ride teh attractions on vacation but when they realized that it was quicker and nearly ommitted waiting in line everyone got on board and let me lead.
I research the weather, the activities, the places to rest. We make time for breaks and do things that we really enjoy. When I need a break I say so. And if no one wants to go with me I'm happy to go it alone. Our last trip as a family everyone wanted to go shopping. I was beat. So I offered to stay back with the kids who want to swim and hung out near the pool. It was a win win. In Vegas my feet were so swollen I couldn't walk. I cabbed it back to the room and watched Law and Order until I fell asleep (Which for me was fun I LOVE Law and Order.)
I also make sure I carry certain medications with me at ALL times. For me this is my antianxiety medication, pepermint oil, eye drops, and tylenol. As well as foot care for blisters. One of the symptoms I have from my Sarcoid is panic attacks which tend to hit me in very crowded places or air planes (and I'm not afraid of flying and used to travel for work). Pepermint oil is great for headaches but also helps cool you down if you are overheated. We also make sure to drink enough water and snack throughout the day.
And with everything else I just push through. The last few trips I've gotten sick on the way there or on the way home with nasty colds. So I also bring cold medication with us and everyone gets an antibacterial gel for their pocket :)
Closer to my reality is the quick dry silver polish and my scented body wash.
But we are going to Disney World in May. And I finally convinced my husband that with our two kids we need to fly vs drive. So at least its a fun break from our lives although I'm not sure how relaxing it will be.
Disney is not a "vacation" in which people meander and rest. It is an all out 7 day marathon of fun. So how does someone like me 1)survive 2)keep up 3)enjoy doing steps 1 & 2.
I think the first thing that I do is PLAN. Lucky for me when we do Disney we go with my husband's family and they are not planners and take little issue with my NEED to plan. Of course I did get some resistence to an actual schedule and touring plan to ride teh attractions on vacation but when they realized that it was quicker and nearly ommitted waiting in line everyone got on board and let me lead.
I research the weather, the activities, the places to rest. We make time for breaks and do things that we really enjoy. When I need a break I say so. And if no one wants to go with me I'm happy to go it alone. Our last trip as a family everyone wanted to go shopping. I was beat. So I offered to stay back with the kids who want to swim and hung out near the pool. It was a win win. In Vegas my feet were so swollen I couldn't walk. I cabbed it back to the room and watched Law and Order until I fell asleep (Which for me was fun I LOVE Law and Order.)
I also make sure I carry certain medications with me at ALL times. For me this is my antianxiety medication, pepermint oil, eye drops, and tylenol. As well as foot care for blisters. One of the symptoms I have from my Sarcoid is panic attacks which tend to hit me in very crowded places or air planes (and I'm not afraid of flying and used to travel for work). Pepermint oil is great for headaches but also helps cool you down if you are overheated. We also make sure to drink enough water and snack throughout the day.
And with everything else I just push through. The last few trips I've gotten sick on the way there or on the way home with nasty colds. So I also bring cold medication with us and everyone gets an antibacterial gel for their pocket :)
Tuesday, March 1, 2011
Answer
So Flavia asked, "What Meds are you on now and what alternatives do you use for your headaches."
Its funny you ask that as today will be the first day in a long time I take all my meds. I had stopped them because I was having a bleeding issue and now thats under control.
I take Medrol (a steroid cousin of Prednisone)6mg/day. 12mg of methotrexate weekly (Tuesdays), Protonix 40 mg (for the acid reflux from the steroids), and 1 mg folic acid daily.
When I first started with the neurologist I was taking 6 medications - they basically threw everything they could at me, antiseizure, antidepressants, muscle relaxers, antianxiety, antimigraine. At one point the neurologist looked at me and said she wasn't sure how I was upright as most people who be zombies with all that medication. I've learned to give the meds a chance to work (at least 6-10 weeks) and then work with my docs on adjusting.
Out of all those medications I've kept the antianxiety and muscle relaxers to help with pain at times. They both help me get comfortable to sleep. Also since my lesion is on a nerve sometimes when the nerve is very aggrivated these meds help relax my body to lesson the pain. I also use acupuncture weekly to get rid of the pain as well as nausea from the methotrexate.
I also use peppermint oil (found at any new age store or spa store) and rub a few drops right on my head where it hurts. A cold wash cloth and dark room also help and I routinely will sleep with one tied to my head that also had peppermint oil.
My last resort is a pain pill. Norco seems to work best. But I do this maybe every 3 months when I'm really desperate.
Its funny you ask that as today will be the first day in a long time I take all my meds. I had stopped them because I was having a bleeding issue and now thats under control.
I take Medrol (a steroid cousin of Prednisone)6mg/day. 12mg of methotrexate weekly (Tuesdays), Protonix 40 mg (for the acid reflux from the steroids), and 1 mg folic acid daily.
When I first started with the neurologist I was taking 6 medications - they basically threw everything they could at me, antiseizure, antidepressants, muscle relaxers, antianxiety, antimigraine. At one point the neurologist looked at me and said she wasn't sure how I was upright as most people who be zombies with all that medication. I've learned to give the meds a chance to work (at least 6-10 weeks) and then work with my docs on adjusting.
Out of all those medications I've kept the antianxiety and muscle relaxers to help with pain at times. They both help me get comfortable to sleep. Also since my lesion is on a nerve sometimes when the nerve is very aggrivated these meds help relax my body to lesson the pain. I also use acupuncture weekly to get rid of the pain as well as nausea from the methotrexate.
I also use peppermint oil (found at any new age store or spa store) and rub a few drops right on my head where it hurts. A cold wash cloth and dark room also help and I routinely will sleep with one tied to my head that also had peppermint oil.
My last resort is a pain pill. Norco seems to work best. But I do this maybe every 3 months when I'm really desperate.
Thursday, February 24, 2011
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....
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....
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.
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