Ben's birthday party was yesterday. He turns 7 on Friday, but we celebrate early because December is always crazy. he had a Star Wars theme, and we had lots of party goers, which was great. Following his party we went to a craft fair to promote Damon's products. We didn't make a lot of money, which was not fun, but we put ourselves out there, and we're starting to get a feel for what people want, and how much they will pay, which is great.
Both Damon and I are exhausted. It's strange because when I get overly stressed I don't sleep at night, which makes the days doubly hard. I am super sore all over, and my hands shake a LOT. My handwriting has been horrible this weekend because of the stress of Saturday. I woke up shaking this morning, and am worried that I might have another flare-up, but I'm hoping it was just a bad day.
It is hard to accept that the MS is permanent. It doesn't go away, or really get better. There are days when it is worse, but not days when it is cured or gone. Slowly this disease will progress and I have to accept the loss that will happen so gradually others may not even notice.
I tried to play the piano for choir today, and because my hands were shaking so much it was really hard, and what used to be easy seemed so difficult. I hate that the most about the hands shaking.
My sister had her baby. He is healthy and happy, and we are thrilled for them.
I am working on starting an additional blog through wordpress. I have to figure out how to work it, but it will be titled MS stole my brain, which seem appropriate. My recent review with doctors to determine my SSD benefits demonstrated just how much my memory has been altered by MS. I keep lists of everything, and have to have people repeat things a lot so that I can remember. Recently, Damon will tell me something, and i know he is talking, but i have no idea what he just said.
Benjamin is challenging us. After the holidays we will have him evaluated. He cries a lot, and seems ot require constant noise and movement. I talked to my therapist about it, and he suggested that i read the book The Difficult Chiild. Benjamin has been so active since birth, and parenting him while sick or in pain is extremely difficult. I remember days when I would lay there and cry and pray that someone would come and help me with him. I would call my mom and ask for help, and she didn't understand that I just couldn't keep up with him. He has tons of energy, and wants constant attention and talks incessantly. I love him to death, but when you are exhausted, in pain, or otherwise incapacitated, having a busy child can be really hard. On the upside, he has learned to be really independent because i cannot always do for him what he needs. We keep on hand foods he can make himself, or snack on easily and he'll feed himself as needed. He doesn't sleep at all during the day, but he is great about bedtime. I wish he'd take naps, but he's so busy bouncing from one thing to the next that i don't know if he can slow down to do so. I wouldn't label him as ADD or ADHD, but I would say that he lots of energy, and needs lots of stimulus. We talked a lot about ignoring problem behaviors and thus denying him stimulus, and the additional need to help him learn to self soothe in socially appropriate manners. I love that I have a therapist who will treat my whole family, and who I can trust completely. It took me several tries, and a lot of grief to find someone that I connect with, but he has been invaluable in helping me come ot terms with the diagnosis that i have been given over time.
Damon isn't feeling well, but he gets his pins out on Wednesday, which will be a huge relief to everyone. He'll still need to be careful and let it heal, but no more pin sticking out of his finger will lower my stress/yuck factor a lot. He'll also be in less pain, which will make him less grumpy. He's been super grumpy, and easily angered this week due to the pain and the stomach issues he's experiencing due to the overuse of antibiotics and a flare of his C.diff infection.
People say I should become a doctor because between Damon and I, I have learned a lot about medicine. I would love to, but don't have the strength for grueling internships and the like. I would mostly lovet o become an herbalist/homeopathic practitioner. I think there are a lot more options for chronic illness in that area than in regular medicine, and I could do more good. I'm going to focus a lot of my future research on that.
Well it is late, and once again, way past my bedtime. So goodnight all.
