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.

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 :)

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.