Hello all,
For those of you who have been here for a while, you'll know I am new to being a moderator. For those who have not, I became a moderator about a month ago. Everyone here knows what it's like to have Chiari, or have a loved one with Chiari, so the rest of this post shouldn't come as too much of a surprise to you :)
I am a 34 year old stay at home mother of two girls. Yesterday I woke up tired. I was stressed and wired the night before worrying about company coming into town this weekend, so I didn't get to sleep until FIVE 'O CLOCK IN THE MORNING shorty after my husband's alarm clock went off. He's familiar by now with my troubles sleeping, so he just gave me a kiss and asked if I needed a back rub to go to sleep. After said back rub and taking my anti-depressant, I put on my CPAP mask, and fell asleep for 4 hours, until my kids got into bed with me. I talked to them for a few minutes, and fell back asleep for another hour. I got out of bed groggy, head and neck sore and uncomfortable, and took a shower. I took two ibuprofen, fed my kids breakfast, and then got them dressed. I home school, so my older daughter started school work (she's 7) and my youngest tore about the house like a crazy person (she's 4). After that, I cleaned the kitchen, picked up the living room, and got onto the computer to check my email. I had five new members to greet on this website, and after reading their profiles, I went to the discussions and looked at the updates and new discussions. During this, my children are talking to me, my phone is ringing, the UPS guy dropped off a package, and after two hours of working on the website, I realize I need to hurry and curl my hair before dance class. After I get home from dance class at 6:00 PM, I am exhausted. I sit at the computer while my husband makes dinner, feeds the kids, changes their clothes, and puts them to bed. I work on the website for another couple of hours putting together a new group to keep our research article links in. I go to bed earlier last night, but my lower back is killing me from sitting all day because I was tired, and I am AGAIN stressing about company coming into town, and my house is still not as clean as I would like. It's now midnight, and I can't sleep. I read a book for 30 minutes, and fall asleep.
I woke up at 6:00 this morning (PST), and my OCD being what it is, I get onto my email while laying in bed. This allows me to gradually wake up before I try to get out of bed, if I don't, I get dizzy and black spots when I stand up. I see someone has posted to the research group, so I add a few research links. I go to the discussions, and see a Goodbye message from a former member. At first I am horrified, wondering if I am the person he is talking about. I know my responses are not as clear as I would like sometimes, they don't express the sympathy I feel, or the frustration with the medical field and their lack of knowledge, or the heartbreak when I hear about someone's child who has Chiari. Because I know what it's like to have Chiari, and it would devastate me if one of my children had it.
My responses get cut short sometimes because I have children who need to be fed, bathed, fall down and need their knees kissed, I have family who calls with their own problems, I have bills to pay and emails to return, and sometimes I have symptoms that don't allow for time on the computer at all. We have dance and piano, and the park, and dogs, and family trips to plan for, or the house to clean since family is coming into town for the weekend.
This is not a job, I don't get paid. I spend at least 15 hours a week as a moderator, usually more than that. I have a selfish interest in it, I as much as anyone else wants to find a cure, a cause, a relief, better ways to handle my pain, a way to be a better mother, because at this point playing with my kids is exhausting and I am winded just walking up the stairs. I spend time on this website because I want everyone to feel better, and if I can help, then I do.
I don't answer every discussion, simply because I don't have time to. Please know, I care about you as a person, even though I don't know you. I am sad when I see you are in pain, just like you are sad when you see someone else in pain. I respond to the discussions that I think I can help with, or when I see no one else has had a chance to respond to them. I post information about Chiari because I feel strongly the more information we have, the better we can manage our symptoms, and hopefully one day they can actually fix this for us. I don't know very much, but I spend a lot of time trying to learn. I am not medically trained, so I Google the name of the symptom so I can find out what it means, so I can finish reading a highly technical article some researcher has written about an obscure association to Chiari.
Right after I finish this post, I'll be taking the kids to the mall to pick up clothes for their dance pictures this weekend, we'll have my younger daughter's dance class, go to the grocery store, come home and clean before company gets here at 6:00.
I know almost everyone who reads this understands exactly what my days are like, because you are busy too right? Kids, spouses, parents, work, school, cleaning, shopping, and finally Chiari, which pushes most everything else out of whack. I schedule around my Chiari, and I bet you do too. I have to make sacrifices because of the Chiari. I choose to spend 15 to 20 hours a week on this website working towards Chiari relief, because I can do it while I am sitting and resting, so if I can sit on my butt and work towards a greater goal, it's a good compromise right?
So, if I have written a response to you that didn't sound right, please ask me what I meant. I have a terrible memory, and sometimes I forget I was editing a post if I get distracted by life. I hit reply, forget to read it over three more times (like I usually do), and go on with my life. I am also a great communicator in my head to the person I am responding to, unfortunately this does not translate always to writing in the same way :)
Every moderator or greeter on this site is a genuinely kind, helpful person. I firmly believe every person on this site is kind and helpful, but I have personal experience with the greeters and moderators specifically. If you ever have a question or concern not answered in a general discussion, please leave us a comment on our personal pages, send us a message, add us as a friend, anything before you get upset and leave. The whole goal of Ben's Friends is to provide a place for people to get together and share their stories, and be able to talk to other people with the same medical issues. We may not be in the same place in our Chiari journey as you are, but we do understand what it's like to start out not knowing what's going to happen, being scared about surgery, being scared about NOT having surgery, being in pain, and our friends and family not understanding what it's like, since we look fine right?
I wish you all the best! I have to go now, but I'm sure I'll be back tomorrow (maybe tonight, it's hard to stay away). :) :)
Mandy