I could not survive my illness without my family, but it has had a toll on their well-being an that makes me sad.
Benjamin is very sad lately. He cries and whines, and he hates that someone has to babysit him. Fortunately summer is coming soon and then he can be home with me and his dad. His dad does crafts, and yells when he gets frustrated. Sometimes it is scary when he yells, but I understand why he needs to. There are so many things to do and to worry about. I want to yell at my sickness, take it out and punch it until it gives in. I want to beat it to a pulp and make it run away and leave me alone, but it won't.
I found a bunch of online support groups. They are helping me come to terms with what will happen. Hopefully by tomorrow I will know if I can schedule my appointment with UCLA. I will have to organize my medical files, and get some from my old PCP, but that's not too big of a deal. It is just hard to know what is important. I think I might even download the disability paperwork and have that all filled out and ready to go with me, or I'll turn it in right before, and then add UCLA's results to the mix. Either way, it will be interesting to learn how that process works.
I have also learned that fibromyalgia is a nasty disease, and have found support groups that deal with that. MS plus fibromyalgia is not a good combination, and I will probably struggle with fatigue forever. It is not uncommon for both groups to be put on stimulants, which concerns me, but if it helps me parent and the like then it may be worth a shot. I have tried them in the past with some success, but worried that they were worsening symptoms, or masking symptoms. I want to put them off until I have a better grasp as to what is wrong with me.
I found fabric to make Benjamin two quilts. One is a Mr. Happy quilt, and the other will be a treasure map quilt. He has tons of blankets, but he loves them, and I want him to have blankets that I gave him that he can pass on to his children. It may be all that they have to know me by.
Sleep continues to evade me. I try to sleep at night, and even take medications that are supposed to knock me out right away, but then I don't. I don't know if I just fight it, or if I'm always tired so I don't know the difference. Maybe I'm just resistant to such things. I am loopy though, and I forget things. Damon left to get celery in the grocery store today. He told me where he was going and everything, and I lost him. I couldn't find him, and didn't know where he was. It was a little scary. I'm afraid that one day I'll lose Benjamin, or my way home. I've forgotten and lost so many other things lately, that I wonder how my mind is ever going to keep up with all that is to come. I'm going to need a system. I think it's time to create a medical control journal like Flylady suggests. I just don't know where to start, or how to organize it.
For fun my family has been playing Mario on the Wii. Benjamin obsesses and got very upset when we failed to wait for him at one point. We had to stop playing, and he cried for a long time. He told me that he misses me when he goes to babysitting, and that he doesn't like it that I'm sick. I told him today that because of my illness it might be harder for us to adopt, and he cried and said that he would have no one to play with. He is worried about first grade and all the changes, and wonders who will be his friend if he doesn't have brothers or sisters. We had to talk about how we have friends at church and school, and that his cousins and such are his friends and will play with him.
The other day Benjamin asked what would happen to him if Damon and I died. He was relieved to find out that Grandma and Grandpa will take care of him, but didn't know how he would get there. We told him if that happened to call 911, and they would get Grandpa and Grandma for him. He was excited that he would get to call 911 to get his grandparents, and relieved that there was a plan. I don't want him to be afraid or worry, but this is a difficult situation. Damon and I worry. Benjamin's life has been drastically changed, and I want him to feel secure. It may be weird to answer questions like that, but how do you teach your child about chronic illness, and the possibilities it may bring without scaring them. We keep it light and silly and only answer what he needs to know, but introduce topics to help him prepare.
Ben told me today that when he gets upset he prays. Today his dad got mad at him, and he hid under some blankets and said a prayer. I asked him if it helped, and he told me it did. I told him that Heavenly Father will always help him when he prays. He prays a lot. He prays that his mommy will feel better. We read a book about faith, hope and charity, and it had a section about Priesthood blessings. Benjamin asked for one, and I told him to ask his Dad because only Dad's have the priesthood. He's had a cough for a while, because of his asthma, and it bothers him. I think we may review that concept tomorrow while Damon is around. A blessing might help calm him and give him the peace that he needs to endure these difficult times with us. I know that I need them, and Damon is always ready and willing. It has been a huge blessing to have that in my home and in my life. The priesthood carries me through my darkest moments, my deepest fears, and my most painful and terrifying days. It doesn't make everything perfect, but it always gives me the answers, encouragement and peace that I need to continue forward.