And it wants the focus back. This week we've had some crazy storms and that meant that my head was hurting. And I caught part of the stomach bug floating around they office which meant I called in sick Tuesday. Oh and I got my period so I pretty much hit the trifecta of feeling lousey. Really I just need to go see Dr. A but I need to find the time to get to his office without kids.
I was feeling kind of bad about my health today and I really need to get back to exercising since that will help with the tension I now carry for having a new job and for kids to be responsible for. I love my new job though! And I'm excited to finally be doing something I really love.
As my big birthday (30) looms near I've been thinking a lot about how I want to mark the occasion and I think I've finally decided to go for the tatoo on my foot. Sarcoidosis is a consideration as sometimes people with the disease don't heal as quickly and they scar. I'll have to see. I want a small tatoo in black on my foot with the lyrics to the song I'm named after. The last line: loves a state of mind. Which is significant with all I've over come and worked through and even now as a foster parent. Which is often challenging and thankless.
Any Sarcies out there had issues with tattoos?
Friday, July 1, 2011
Wednesday, June 8, 2011
Tough Cookie
As I type this I'm sitting with the kids and the hubby watching America's Got Talent. We needed this night to just chill because we have been in constant motion for the last 2 months. I caanot believe that we are coming up to the 6 month mark on children being in our house. When I stop to think about where I was a year ago with my illness, with my career, with my family I almost can't believe that I am here. In this life, with these people. I always thought getting sick would be the hardest year of my life, but I have to say that as tough and challenging as it was this year has been by far the HARDEST.
I have experience all new levels of pain. Losing my Grandma has been unbelievably tough and the greif still catches me off guard. Taking in these children and learning about the AWFUL, AWFUL abuses that they have suffered at the hands of others has made me physically ill. And the fear that one day someone is going to tell me I can never see them agian has gripped me and not let go.
But in this pain there has been joy. So much joy that I wasn't expecting that it makes me feel almost as if its not real. It is because of this joy and laughter that I feel I've been able to cope with the tough stuff.
I have experience all new levels of pain. Losing my Grandma has been unbelievably tough and the greif still catches me off guard. Taking in these children and learning about the AWFUL, AWFUL abuses that they have suffered at the hands of others has made me physically ill. And the fear that one day someone is going to tell me I can never see them agian has gripped me and not let go.
But in this pain there has been joy. So much joy that I wasn't expecting that it makes me feel almost as if its not real. It is because of this joy and laughter that I feel I've been able to cope with the tough stuff.
Wednesday, May 11, 2011
BUSY
I have not blogged in a while simply because life has been CRAZY! We have all four siblings living with us, I started a new job, and we are leaving in 2 days for Walt Disney World. Life sped up into overdrive and I haven't looked back. And while all of this happened within the last month it feels like this is where we have been forever. We are busy every day and every weekend and it will be really nice to have a week with no appointments and just good quality family time.
I guess the best news is aside from a migraine here and there I've been feeling pretty good. I'm tired but I think that has more to do with having 4 kids that I am responsible for than Neurosarcoidosis. I've cut down on the accupuncture some mainly because I feel pretty good. And that makes me marvel at how far I've come in my progress as a patient.
I have a facebook friend from high school going through the process of trying to find out what is causing her pain. She's treid lots of things and had many tests and this past week underwent a lumbar puncture (spinal tap) this week. And I was able to pass along my advice! Which made me feel good. I hope that her procedure was a little easier and I pray that the doctors find her a diagnosis and some relief.
I guess the best news is aside from a migraine here and there I've been feeling pretty good. I'm tired but I think that has more to do with having 4 kids that I am responsible for than Neurosarcoidosis. I've cut down on the accupuncture some mainly because I feel pretty good. And that makes me marvel at how far I've come in my progress as a patient.
I have a facebook friend from high school going through the process of trying to find out what is causing her pain. She's treid lots of things and had many tests and this past week underwent a lumbar puncture (spinal tap) this week. And I was able to pass along my advice! Which made me feel good. I hope that her procedure was a little easier and I pray that the doctors find her a diagnosis and some relief.
Sunday, March 27, 2011
Pray
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.
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.
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....
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