Tomorrow I hopping in the car and heading to Baraboo, WI to meet up with a group of individuals from around the state who share with me a myositis diagnosis. I'm a little nervous. It has taken years for me to get comfortable with this. It's a process.
I remember when I was first diagnosed I went out to the internet and found the myositis website. There is an on-line support group/message board where you can ask questions, tell stories, share your struggles, etc...I visited. I asked questions. I decided it wasn't for me. I wasn't going to let the experiences of others be mine. I was going to take this as it came and process it and deal with it my way.
Time passed and I realized that although I never felt alone, it's definitely hard to explain muscle fatigue to someone who doesn't have a muscle disease. It's hard to process and talk about what I could do and what I can't do anymore without sounding like I'm complaining. It's hard to know how to respond when someone asks "how are you doing? or how are you feeling?" How much do they want to know or should I just say...I'm doing great. It's hard to accept that medication will be how I start and end each day, probably for the rest of my life. This is something that I expect this group of people will understand only too well.
What I am really hoping for is that they have found the blessings of each day intertwined with the challenges we all face. I hope it will be a positive experience for all of us. If nothing else, The Log Cabin restaurant in Baraboo says they have great pie and I have a couple of picnics to go to this weekend so I'll be bringing a few home. Bill loves pie!
Have a safe, fun memorial day week-end. Take a moment to thank a soldier.
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2 comments:
I think...that this is going to be a great opportunity. You will be able to relate with others, and it may be difficult...but what I see is that YOU are handling this, although it's a challenge every day - some how...you put the best construction on everything. These people will need you - just as much as you need them. I'll say a prayer in the morning for you and wish that they have some fantastic pie to make the trip even more worth it! (p.s. - watch for cops!)
Have a safe trip. We'll be thinking about. God bless.
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