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Friday, March 25 Getting things done

Saturday, March 26, 2011

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Hi everyone,

This day has had me on one mission after another. I have to tell this terrible tale to start with though. Grr-rr, I won't get over this for a while. I went for my appointment with my back doc. He came into the room and asked me how I was, told me that I was "normal" and "fine." Then he told me that there was "nothing surgical he could do for me." He ended this very quick appointment by telling me, "You have back pain."

Really?? Really?? I have "back pain." I don't think I needed anyone, especially a doc to tell me that I have back pain. Enough with this guy--enough. He did save my life and did this enormous procedure on me so that x-ray technicians and doctors are in awe of the hardware in my back that has "totally fused." Okay. However, I still cannot walk over 16 steps befoe my back starts to hurt and I have trouble standing upright. I can walk in the pool--and I can exercise there like crazy. I believe that there is some other step in my healing that I need to help me be as strong and balanced on land as I am in the water--and this guy isn't the one to help me achieve that. It doesn't much matter what this guy says, because I saw him for the last time ever today. That is that.

I left that waste of time to go on to start shopping for Matthew's surprise party tomorrow. I had fun spending money at the party store and have everything in shades of green and blue for the decorations. It was fun checking out all of the ideas at the party store--it would be easy to blow a pile of money on a themed party there... I still haven't decided what food I am going to serve. That is a tricky thing given the fact that we haven't any idea whether to ex[ect 10 or 50 people fr this. (If I had gotten organized enough to get the invitation published last week in the church bulletin, it would have been beter--but our pastor was out of town and i couldn't confirm things with him the way I needed to.) We have a nice cake ordered, so that will have to do until tomorrow, lol.

We went to the fitness center and I had a really good work out today. I don't know how it is that some days it seems that I do better than others--I think it has to do with the pace of things. I have doubled my amount of time on the bike--I'm up to 20 minutes now. I know that that might not seem like a lot to the way many people exercise, but for me, it is a nice improvement. I remember hurs in theray to get from 5 minutes to 6 to 8 and so on....

I wish that each of you has a wonderful weekend. I am expecting Matthew, our oldest son to be quite surprised at his party and that will be fun. I hope to have some photos to share.

Gentle hugs,
Sylvia

  
  Member Comments About This Blog Post:

MORTICIAADDAMS 3/26/2011 8:47PM

    I hope the party is great.

I'm sorry about the doctor. It sounds like he has reached the scope of his ability to help you and you will have to look elsewhere. Maybe a different specialty or a pain clinic.

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EMRANA 3/26/2011 5:04PM

  Have a wonderful time at your party!

I'm sorry the doctor disappointed you. I'm not surprised though. After all my spine drama, I don't have a lot of faith in the medical profession.

Maybe there *is* a better alternative than surgery. The surgeon just pretty much wrote me off and said I needed a two level fusion but he wouldn't do it due to my age. I've got my fitness level to such a great state, getting better all the time. With NO help from the arrogant surgeon. He and another doctor told me the same thing ~ it was going to be "normal" to experience this back pain due to my injury. Honestly, outdoing their expectations is just another motivation for me.

Congrats on the 20 minutes! That's exactly how I got where I am ~ start small and slowly build. Keep up your dedication to your fitness and it will probably be the best thing you can do for yourself. I read on a spine forum that most people don't experience significant pain relief from their surgeries, including fusions. They stabilize your anatomy, but don't take away the pain. I think we have a lot we can do to help with that, just through our fitness. Every time someone is incredulous that I work out twice a day, I just say that those sessions are giving me my life back.

I really admire all the physical fitness you do in the midst of such a busy life. emoticon

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JHADZHIA 3/26/2011 11:59AM

    Shame about that back Dr. -helps you so well, then has nothing more for you when the problem hasn't been fully solved.. I hope you can find an answer with someone else somewhere..
Well done with the bike! Nothing wrong with that! I too, remember when I couldn't do 5 minutes on the elliptical without feeling like I was going to die!
Love those colors you are choosing for Matthew's party! Should be a good time for all! That is really difficult not knowing how many are coming..Good luck with it..
Looking forward to the photos.
Do make sure you get in your pool time. You need to find me time in there every day..
{{{gentle hugs}}}
Linda

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DARBOYMOM 3/26/2011 8:08AM

    Hey, 20 minutes is double what Spark Guy says to do every day, so you gotta be very proud of that! I hope Matthew has a great party! "My" Matthew turns 10 on April 17, and we are still deciding what to do. Whatever it is won't be a surprise, but we'll make it special no matter what. Tell "your" Matthew "Happy Birthday" from your new Spark Friend!
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Thursday, 3/24 Tired

Thursday, March 24, 2011

Hello everyone,

I am tired. I wonder if I am always tired. I don't know if it is because of the terrible patterns of sleep that I have or if it is because of how busy I always seem to be. Maybe it is both things. However, I am smart enough to know that I am tired.

I started out this morning by over sleeping again. I got up just in time for the bus to pick up the kids. That was absolutely NOT what I needed to do. Now, usually I can't oversleep since I have to get ready for work, but this week has not been good for that. I am so glad that Micah has done his best without me needing to bug him. I got dressed as quickly as I could so that Megan and I could head to school for a while. We did quite a bit of work in my classroom and I spent some good time working on my writing.

Mitchell came and joined us and I helped him to select a variety of books about plants and animals to go with the unit he is teaching when he gets back to school the week after next. We ran a couple of errands after that and went to the fitness center. I am getting better at the bike and increased my time on that. It sure helps that they have a couple of bikes that have fully backed seats. Having that support helps me to be able to use the bike and increase my workout time. I went from there to the pool. After I did my regular work out and swam some laps, I showered and then enjoyed the sauna. I sure love the dry heat of the sauna, it makes my body feel better in many ways.

I had physical therapy after my workout and today, it seemed as if my shoulder was better than it has been for a couple of weeks. My PT has given me a few new things to do this week. She also increased the resistance in a couple of activities and she also raised the number of sets on a couple of other activities. We stopped and did some grocery shopping on the way home, and I am really glad that we did because I was unprepared for the enormous amount of homework Micah had to do.

We spent the entire evening on homework--and I am sorry to admit that I fell asleep for a few minutes as he was working. He had 4 science assignments, 2 social studies assignments, 2 writing assignments, and a math assignment. There was no way I was going to get all of that out of him in one evening, so we did one of everything--and I focused on the longer ones. He had this long study guide for science, and it was as he was doing that that I dozed off. He was quite angry with me, but it isn't as if I did it on purpose. Oh my.

He got finished at 10:40 with the amount that we did do--and when I finish this, I am going to email the teachers and let them know that it was all he had time for. I am not even going to ask why they didn't let me know about all of this before now, but I sure want to ask that.

Now, it is time that I could go to sleep, but I need to finish Matthew's taxes and resubmit Megan's. I have tried to submit hers five different times now and the IRS keeps refusing them. I have decided that the way to manage it is to use a different site and do them all over from scratch. I called the IRS yesterday and they confirmed the PIN, I have checked the math and the accuracy of the numbers multiple times but I cannot find any problems. That is frustrating enough!

Anyway, if I get going I should get to sleep early enough to have a decent night of sleep before I see my back doc tomorrow. I have to take care of the shopping for Matthew's surprise party tomorrow--I hope that will be fun. (the shopping ad the party!!)

The answer to being tired is to get more sleep. I'm going to try that tonight!!

Gentle hugs,
Sylvia

  
  Member Comments About This Blog Post:

JHADZHIA 3/26/2011 12:08PM

    I agree with the others that is a lot of homework. Surely, this wasn't given to him all at once? If so, make sure there are allowances for time to get it done, it shouldn't be this heavy for a special needs child.. Poor Micah, I can see his being frustrated.. As for you falling asleep, you are not listening to your body, you need to get a good sleep and hope that happens for you..
{{{{gentle hugs}}}
Linda

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MORTICIAADDAMS 3/25/2011 10:54AM

    I'm surprised at the amount of homework your son has. I'm not a teacher but as nurse I feel that is fairly overwhelming for a child with special needs. They need time for something besides homework. It's not healthy. They seldom give homework here any more and many don't do it even when it's given.

I didn't sleep well last night either. I'm exhausted. Let's hope we both do better tonight.

I hope the party is a great success.

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EMRANA 3/25/2011 9:24AM

  More sleep sounds great! A full week of sleep in your case!

How could Micah have that much work in one night? That's insane! Even if he didn't have Aspergers, that's way too much school work.

Glad to hear you are getting stronger with your PT and your shoulder!

If you like the dry sauna, you should live in southern Alberta! We have a very dry climate here, and it does help with pain. At least until we get chinook winds and it disrupts everyone with chronic pain.

Enjoy your party!

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DETERMINEDJANET 3/25/2011 12:07AM

    I think I'd be tired too with all of that going on! Hope you get a good rest tonight!!!

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Wednesday, 3/23 My health and fitness

Wednesday, March 23, 2011

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Hi all,

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. emoticon emoticon
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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. emoticon emoticonI am good with this because it opens the door for what I believe I need next.
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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. emoticonI want to walk unassisted and to do that, I need to strengthen my back and straighten my posture.
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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.
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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. emoticon
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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.
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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!!)
Gentle hugs,
Sylvia
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  Member Comments About This Blog Post:

JHADZHIA 3/24/2011 1:23AM

    Hope that medicine does something for the fibro and that easing your weights and the new therapy exercises helps with the pain..
I can't imagine uninterrupted sleep -good luck with getting more..
{{{gentle hugs}}}
Linda

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MORTICIAADDAMS 3/23/2011 10:21PM

    I hope you get some relief from the pain soon.

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Monday, 3/21 The big school meeting

Tuesday, March 22, 2011

Hi Everyone,

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,
Sylvia

  
  Member Comments About This Blog Post:

KITTY_WHO 3/24/2011 10:19AM

    Oh I hope the school really do cooperate. They really need to educate themselves. Good for you for helping them do that, your son has a right to an education the same as any other child. My boy has been in a similar situation regarding discipline for his disability and so I know how it feels to know that is going on. Best of luck. KW

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GREENMAMA10 3/23/2011 5:16PM

    So glad things are starting to look up! Hoping everything works out! :o) emoticon

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MTNGRL 3/23/2011 4:17PM

    What a blessing you are to Micah and all your children. I know this has been a real struggle for you and am so proud of your pro active stance for the good of your child. Plus I am thrilled that your DH was by your side during the meeting.

Comment edited on: 3/23/2011 4:23:42 PM

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MORTICIAADDAMS 3/23/2011 1:59PM

    I'm sure that due to your being proactive things will change for the better for Micah. He is fortunate to have you as his advocate.

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LESLIES537 3/22/2011 3:51PM

    Your son is lucky to have you to advocate for him. It's surprising that you had to educate the educators on asperger's. I commend you for doing so and for sticking up for your son and for what is right! I have the utmost respect for you! Thank you for sharing your story and inspiring others along the way. emoticon

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DARBOYMOM 3/22/2011 1:54PM

    Sylvia, I read your blog after you posted on the Dealing with Asperger's team. What a wonderful job you are doing in teaching the school about your son's challenges -- but it's really a shame that you need to do that. Do you have an IEP for him? It sure sounds like what you are doing would be a great start to a formal IEP plan. We have one for my son, and I'm very happy with it. I'm not sure how the laws are from state to state, but I think there are legal protections in most states our kids.

Good luck with your plans and your son's school. I certainly hope they follow through as promised!

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JHADZHIA 3/22/2011 1:44PM

    I am so glad you are opening that school's eyes and that you now have an advocate for him. I hope now that Micah will get the education and tolerance he deserves. Its nice to see you will now have other people who are dealing with this same problem to talk to.
Now that this anxiety is over and done to your satisfaction, do relax and enjoy your day and take extra time at the pool for yourself and let the stress pore out of you.
{{{gentle hugs}}}
Linda

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JRSWHIMSY 3/22/2011 1:30PM

    I know I've been out of the loop. Micah is so fortunate to have a good family on his side. I wish you all the best!

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BLESSED2BEME 3/22/2011 8:48AM

    I see lots of hope now and that is so good. Being a child's advocate is so important but can also drain the life out of the adult. Please take good care of yourself! I will continue to pray for this situation and your son but I see the Lord working already and prayers being answered. I'm sure the road will still be bumpy but with time, patience and learning on the school's part, I bet you are headed in a very good direction!



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EMRANA 3/22/2011 8:43AM

  Wow, you may have been nervous about the meeting, but I don't think you could have made it better than you did! You were prepared, well spoken, and strong on behalf of Micah. I'm glad there is a lot of positive coming out of it, and that the school is better aware of what he needs. Good for you!

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MARTHAWILL 3/22/2011 7:41AM

    Wow Sylvia. Good for you for standing up for your son and his best interests. It is obvious from your writing that you have a good handle on your son's needs and are able to articulate them very well. The school obviously is lacking in sufficient education and knowledge in this area. I'm sure you will make a difference for others who may follow.

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JENQUEENOFCHAOS 3/22/2011 2:01AM

    No wonder you have been a nervous wreck!
It can be so hard dealing with schools and our children's special needs - but it sounds like you did a great job advocating for your son.

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MKPRINCESS007 3/22/2011 12:30AM

    Hey there......just added you as a sparkfriend, and came back to comment on your blog. Let me begin by saying I have an 11 year old son with Aspergers, and I so I know first hand of the challenges you have been facing.

You are a wonderful advocate for him! It sounds like you are doing so much, but of course, it is concerning that you have to teach the school what Aspergers is, and the best interventions to ensure success. I would love to talk with you further! Please friend me, and we can keep in touch. There are two teams that you might be interested in too, check out my page and you will see them.....one on Aspergers and one on ASD.

Talk soon!

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Sunday, 3/20 The rest of spring break

Monday, March 21, 2011

Hi all,

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!!

Gentle hugs,
Sylvia

  
  Member Comments About This Blog Post:

MORTICIAADDAMS 3/23/2011 2:11PM

    I like schools who have a zero tolerance on bullying. It's a big problem.

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JHADZHIA 3/21/2011 1:22AM

    So sorry about your son's continued problem with insensitive teachers :((. I hope you can get it clarified for this school yet again.. It sounds like you need a new pain Dr. to me. Maybe its high time you go see the best in the Mayo clinic. You are not getting answers or solutions locally..
Glad your weather is so nice. Hope it continues.
Have a good week!
{{{gentle hugs}}}
Linda

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