Community

Last weekend we had the opportunity to volunteer our time to a GE BEE Healthy event that my husband was running in conjunction with Youth Outreach Services of Cicero. For those of you who don't know anything about Cicero other than its talked about in the musical Chicago, its a pretty beat up city very close to Chicago.

This group works with troubled kids and other groups to keep children off the street and to become productive human beings. There were about 100 kids at this event working hard to exrecise in order to win new backpacks filled with school supplies and a Wii. The group was 99% hispanic kids and I watched with pride as my foster daughters spoke in their native language to people they could identify with.

And we were there as a family. Pitching in. Making people's day better. Even the little guy got in on helping out. I had the opportunity to gift a young Mom with school supplies for her twin daughters who were starting school Monday and had nothing in the way of school supplies. Something I take for granted as I'm a post it note and sharpie junkie. We also met a young man working very hard to stay on teh straight and narrow and so we offered to sponser his books for his first semester of college.

I was reminded how much I enjoy volunteering. Though I've felt that I haven't been able to do it as much. I realized its a good lesson for these kids and a good reminder to myself that the more we give the more you get back. After all we've been through in the last few years this day was a good example of creating our lives to be how we want them. Giving. Cheerful. Fun. Filled with love and family.

I've been a bad blogger...

My intention for this blog was to discuss the challenges of being ill and trying to live life. I haven't written here in a while because I have focused my life on a totally separate topic and thankfully the illness hasn't made foster parenting more challenging than it already is. I get head pain on some days but the acupuncture takes care of that for the most part. I'm tired a lot but that's more from all that I'm doing and my inability to go to bed earlier. My immune system still feels shot but that could be that I have 4 germmy kids touching me ALL the time.

I have still not gotten my MRI or made any of my doctors appointments. I'm a bad patient. I have been feeling blue lately and I think it's mainly this unknown stuff regarding the kids. Are they healing? How long will they be with us? Is them going home the right thing? What happens if I never have children to call my own? Well this and trying to stay organized. I have never seen so much paper or had so many aces to be. EVER.

So that's an update on me. I'll try and come up with some good blog topics. Maybe I'll stray from illness and just talk about life. Anything you readers want to know about me or foster parenting or sarcoidosis?0

Your Disease Called

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?

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.

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.

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 :)