Wednesday, March 23, 2011
After a pretty awful night for back pain, something happened and I slept in--I slept until 9AM. Oh my, what an odd night. The down side is that I was incoherent as my kids got ready for school and didn't get to check to make sure Micah had his homework and was not wearing the hoodie that he loves so much (He likes it because he can be "invisible" at school--but the school staff consider it wrong and disrespectful. I sure wish some people would lament the fact that he has a need to be invisible at school as much as I do.) I also missed exactly how late Marissa will be tonight. Wednesday is her usual late, late night with Jazz band and madrigals after the musical rehearsal. Oh my, she can always call.
Yesterday at physical therapy, my therapist was pretty sure that we can close this part of my rehab. She checked my shoulder in every possible way and believes that the current soreness is due to my over exercising. (oops) She wants me to cut back the size of the weights from 4 and 2 pounds to 2 and 1 pound. She gave me some additional range of motion work that will help me with the higher positions. Anyway, I have an appointment tomorrow and she will give me a few other new things and then I am taking a week off from seeing her. She will see me the following week and if I am maintaining or improving, that will end this work. I am good with this because it opens the door for what I believe I need next.
On Friday, I am seeing my regular back doc. neurosurgeon for a report on my bone scan. I am not expecting anything from this guy because that is what he has been all about for a while. However, that will open the door for me to get another doc to start me on physical therapy for my back. As much as I love the pool and am faithful to it, I think I need to do some work on land without the soothing support of the water. I have faithfully exercised my body and my back in the water daily for over a year with very few misses--and those have all been for big life issues like when Megan was in the hospital. I need more and I need an expert to help me to determine what it is. I want to walk unassisted and to do that, I need to strengthen my back and straighten my posture.
I have added bike riding to my workout each day. I am not great at it or fast--my right knee doesn't bend completely or straighten completely after my two rounds with RSD around two replacement surgeries. Geesh, come to think of it, I have come a long way, lol.
I have about 4-5 days of my trial of Savella to determine if it is going to help my fibromyalgia. I am not sure yet, but my rheumy told me that I would know by the end of the two weeks. I think it helps me to sleep longer which is a real plus. anyone who doesn't have a problem getting uninterrupted sleep doesn't know what a real gift that is. I sleep in weird little chunks, but I always have some fatigue going on. It was nice to have this day off of work to catch up on the sleep I couldn't get during the night.
I am trying to stir the pot and take care of me in the midst of all of the other pots I am stirring. Being the mother of 8 with a job like teaching sure uses my time in interesting ways. Like I often tell my kids, I use my time for the thing which needs me the most at that particular time. My spring break has been about Micah and my health. I have a couple days left to tie up the loose ends and to work on my National Boards renewal. I did a tiny bit of that today since I slept through my scheduled work time.
Anyway, I'm thinking spring and that's a good thing. (I did hear we are supposed to get snow this weekend, but I believe they are wrong as usual, lol!!)
Tuesday, March 22, 2011
I have been so stressed over the situation at Micah's school and all of the problems. They hadn't shared the fact that he had several referrals for behavior last week. Micah had told me about one of them, but they are now sending him to the office if he doesn't get started on his work when he is told. He doesn't even have a chance to be successful anymore. I had a couple of less than pleasant emails from the teacher who has been doing the most of these at the end of last week when Micah talked to me about the situation.
I tried to be proactive with this. I apologized to the principal for pouring out my heart and laying blame on the school, not because I believed I was wrong but because I knew that I couldn't resolve the problem if we had a hostile relationship. I dropped off a bunch of good information on what Aspergers is, ways to work with kids with Aspergers, the hidden curriculum that is a problem for kids, middle school aged adolescents and Aspergers, and so on. I left them a clean set and a set that I highlighted key ideas in, so they would be sure to see the parts that were important. I also bit the bullet and let them postpone this very important meeting so that they could get people there. I even agreed to them inviting a representative from our local special education district (and I didn't fuss when they had her observing my son without my permission.)
I started the meeting by letting them know that I didn't want to spend time talking about what has happened in the past, but I wanted to focus on what my son needs in order to have a successful education in a caring and nurturing environment. I added that I needed to know that he wasn't being disciplined for his disability because that is inappropriate in every way. My husband took time of of work to be there to support me in this because, like I said, I have been a nervous wreck about this. One of the most interesting things that happened is that the lady from the special education agency was on the same page as me, and she ended up being the advocate I have been trying to get for my son.
For those of you who are educators and for those of you who have any concept of right and wrong, I think you might be surprised at what I fought to get for my son, but I am feeling like things are going to be better. First of all, the staff is going to be given some training on what Aspergers is and they are going to learn that they need to pay attention to Micah and give him praise for the things he is doing right. When he has a problem in class, the teachers are to talk with him to find out what the problem might be and if he cannot verbalize what he needs, they are to allow him the opportunity to write it down. If he cannot do this, he is to be given a change of environment, like a walk to the library and back and then a chance to try again. If that doesn't work, he is going to spend time with the counselor and if that doesn't resolve the problem, he will call his father and talk to him.
The teachers are going to chart if he has had a good class period and maintained control over his verbalizations and personal space. We will reward him for his good days. They are going to explain his condition to his classmates and request their help with not laughing and encouraging him to make noises in class. If he is successful with their help, we are going to give a class pizza party or whatever to reward all of them.
The counselor is going to work with him on learning how to talk to the adults when he needs help--like when the kid was calling him names and he was so frustrated he couldn't do his work and he got into trouble. She is also going to work with him on social stories to discuss how to handle situations that come up in school. Finally, the teachers are going to sit down with him the last 5 minutes of his day and make sure that the has his planner and homework in his bookbag to bring home so I can make sure he doesn't get behind.
We were there for almost 2 hours and as we walked out, Micah came out of the nurse's office. He was clutching at his stomach and he described a headache and feeling all jumbled up on his insides. It sure sounded like an anxiety attack to me. We brought him home and I had him call his psychologist. He talked to her and she talked to me and told me that she thought it was anxiety. She reminded him of breathing exercises she has taught him and asked him to either write about what was on his mind or draw some pictures of it. She suggested that I let him know all of the ways we were going to resolve the problems and to give him positives. I did my best with all of that and we discussed his condition.
It sure is a lot for a 13 year old to deal with and I will stay angry at the school, but Micah wants to stay at the school he knows and with the friends he trusts. I think these things will work if they play nice and I think I did a good job of not letting them steer things off track and be dishonest by omission or perseverance of their own.
It isn't easy having a child with special needs in the first place. The rest of the world can make it easier or harder, depending on their attitude. I sure hope I have this situation under control. I have requested that it all be in place by the first day they come back after break which is April 4. They owe him that much.
The rest of my break is for my writing and my medical appointments. I had a good weight loss this week and I have added in some cycling to my exercise routine. I am doing the best I can for myself as well.
Happy spring everyone,
Monday, March 21, 2011
As you all know, I love Sundays. This was an awesome one with our temperatures getting up to 70 for the second time now. We had an awesome church service with the theme being "journeys." We are all on a journey and we take so many throughout our lives--it gave me a lot to consider about myself, my walk with God, my family, being a teacher, and what I value in life. After we got home and had lunch, we zipped off to the fitness center because my daughter had a job interview for the local waterpark for the summer there. I added in some bike riding to my daily routine before I did my workout in the pool. I have made a thoughtful new friend who is quite a talker. Part of my exercises are stationary and having someone to chat with is okay. He suggested that I take my back issues to Mayo in Rochester and that stays a possibility on my mind. He thought that I had polio because of my walker, but no, my walker is just to support me because of the problems of my back. I am up to about 16 steps before the pain makes me need support these days, far too few for someone as active as I am.
Monday is the big meeting with my son's school. My husband is taking off work to go with me and that will at least make me feel a bit less alone. My son had trouble with a teacher again on Thursday that resulted in another office referral. She didn't bother to find out that another kid had been bullying him and tried to deny it happened because that kid's para didn't hear it. Micah told me that that person wasn't there when it started. The name calling (fat, dumb, stinky) upset Micah so much that he couldn't get started on his work and she didn't bother to find out why. She gave him one chance and he told me he was trying but she told him he had to go to the office--he didn't do that fast enough to suit her, so she wrote that off as more noncompliance. Micah is a slow moving guy and his condition makes things like schedule changes and disruptions (like the name calling) upset his functioning. It may seem a bit silly to some, but it is typical of kids with Aspergers and autism. She has to do better and I have to insist or find help to make it happen.
The rest of the week is for my writing and my medical appointments. This culminates with the appointment with my pain doc on Friday. Unless this guy behaves himself in a lot different way, it will be the last time I ever see him. I cannot take his nonchalant manner and the way he zooms out of the room after making me wait over an hour to see him. I need a non-surgical intervention for my back and he doesn't seem interested in helping me. I think there is some solution for me and I intend to find it and do the work I need to be better and to live my life the way it is intended--maybe even without my walker.
I hope that spring is good to all of you--I'm looking forward to seeing green buds on trees show up after all of the snow of the season. Have a great week!!
Saturday, March 19, 2011
It has been a quieter day than most for me. I had a bout of rather unpleasant nausea again today and I am convinced that this is a result of my new medication. (The package lists nausea as a side effect for one. I have had it 3 times in the morning since I started taking it and the only other possible cause could be a "sweet" breakfast. I had a slim fast shake two of the days and today I had a cup of milk, 1/2 banana, and a Luna bar. Today's breakfast is one that I have enjoyed many days though, so I don't think it was the sweet content of what I ate that made me feel so bad.) I will have to hold out and see what happens this coming week as I get used to the medication. I also need to see if this medication is helpful in reducing my fibromyalgia discomfort.
That beings another thing to mind for today. I ran a few errands and went to Micah's bowling banquet. I was too sick to partake in any food and left Micah and Miles to enjoy that while I went to lie down in the car. I came home and did a few chores before we went to the fitness center. It took a bit for me to "get into" my workout at the pool. I continue to be sore in my shoulder and I was also sore in my arm and wrist when I left. This arthritis business can be disconcerting when I feel pain that I didn't have earlier. I continue to deal with extra pain in my back and am looking forward to getting somebody else to help me to help myself to be better.
I took a nap again today after we got home. That's two in a week for me and I appreciate getting a few extra moments of sleep in. I am constantly tired because of the limited hours of connected sleep I get. I wake up during the night most nights and I often cannot get back to sleep due to pain in something. Any extra sleep that I can get is a gift as far as I am concerned.
I've been super busy this first week of break, but it has been a welcome change of pace for me. This coming week is all about my doctor appointments, the appointment at our youngest son's school on Monday and my writing project for National Boards. I also have a birthday party to plan for Saturday--it's hard to believe that Matthew, our oldest, will be 29. It has been a while since he has had more than a family gathering for his birthday and I am thinking this is a special day for him.
It has been a quiet day for me and I am giving thanks for this. I hope that you all are having a fun and quiet weekend as well.
Saturday, March 19, 2011
It has been quite a week. I have seen two of my doctors for regular 6 month check ups, another for the first time in two months and a fourth who I see fairly frequently. All of them mentioned my weight loss this week and that was pretty moving. My rheumy, on Monday, added up my weight loss over the past year and asked me "Are you doing this on purpose or is something else going on." When I told him that it was very intentional, he told me that it was very good for me and that it was an important thing for my health.
On Tuesday, my ortho commented that I was "looking very good" and that he was "so happy for me and my weight loss." He told me that every time he sees me, I just "look better and better." He told me that he was proud of my success. On Wednesday, I saw my psychologist and he asked me "How are things going for you with all of the weight loss?" We talked about the ways it has changed my life--and not surprisingly, all of those things have been positive!
Today, I saw my pain management doc for my regular 6 month check up. He told me that I had "really done a lot of good for myself with all of the weight that I had lost." He said that it was "better for me than anything any of the doctors could do" and that he was "proud of me."
It really means a lot to hear those things. When I first lost weight, I heard a lot of compliments, but those have tapered off considerably. Compliments are motivating and really push me to another level. These compliments meant more than some because they all came from people who are helping me to feel better. They all recognized that I put some work into the changes I have gone through and that I am all the better for what I have accomplished. I wasn't expecting this from all of my appointments on the first week of spring break, but I am sure glad that I received the compliments.
I am even more glad that I deserved them.
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