It has been a tough couple of days. Zoralei has been not making time to get her exercises done beyond 15 minutes a day and I can see the drama beginning to unfold.
She babysat her siblings the other day and her brother accidentally kicked her in the nose. It bled heavily and obviously was quite painful. Her reaction was through the roof, sort of pre hospitalization stage. Not just crying, lots of drama. She freaked out on her brother, called us hysterically on the phone. The way she talks about the experience (the fact it is all she talks about and focuses on) is so dramatic. The next day, it was still all about her nose, even though there was no visual bruising. If you asked her about anything else, it came straight back to her nose. I have no doubt it was very painful, especially with all the blood and the way in which he hit her. He definitely hit her hard and I suspect that since Zoralei looks like she has slight circles under her eyes, that it is sensitive under the skin, though not obvious to another's eyes. Still, she just wasn't recovering from it and was still icing it hours later and focusing entirely on it the next day.
Even two days later, the first thing she told people at church was about the incident. It was like it was easier to focus on something physically wrong than the fact we did an urban scavenger hike or her brother got a goal in his football game that she attended or that she is working with other youth on a church talent show or that she has almost finished making up all her homework from a three week absence. I am not sure what the implications are of needing to gain some kind of attention from it, but it was pretty obvious that the more stressed she is, the more physical injuries tend to be exasperated; not only do they hurt more, but they are expressed more dramatically and focused on verbally.
We went on an urban scavenger hunt with some friends and she tripped while she was walking. The hysterical crying was instantaneous, even though she recovered from it quickly physically. It was over the top and my husband and I knew we needed to talk to her about what was happening.
Perhaps it is all exaggerated by an upcoming menstrual cycle, but either way, it has been just over the top. She is almost done her makeup work for school, but the fact that it is all she has focused on for two weeks has her completely stressed out. Furthermore, all the pressure from teachers to get her makeup work in quickly (even with a 504 that should have adjusted the work load, but did not really) has left her little extra time to do her at home exercise program, which has not helped at all.
We talked to her about not backtracking. Zoralei said she "did not want to go backwards, but going forward is a lot of work." She was very good about talking about it and recognizing what was happening when my husband and I both independently talked to her today. There wasn't a lot of drama in those conversations which showed me that we have not completely lost the things she learned from the hospital experience. It also showed me that she wants to get better, but as a teenager, it is really hard to find the balance in life, to put herself first when she feels so many people (esp teachers) are depending on her. She keeps telling me 'I am trying" about anything and everything. I reminded her that she is not just trying, she is succeeding. She is doing very well. But it was pretty obvious that her expectations of herself are unrealistic and that she is holding herself to this high standard, recognizing when what she is doing could be improved, instead of seeing how much better she is doing than she had before. But her focus on the negative is not helping her move forward. I can appreciate why the program is designed to teach her not to focus on her pain.
Hopefully, this week will go more smoothly.
Sunday, October 26, 2014
Wednesday, October 22, 2014
Zoralei got sick
Zoralei got some kind of bug with nausea and a sore throat the past two days and ended up missing school. Since she was home, she was trying to do some of the makeup homework that she missed from being hospitalized. The more time that has passed, the harder it has been to get the work done. Progressively, there was a little more whining - just general kind of complaining comments, particularly about schoolwork and time management. She has said nothing about the pain, simply one comment that she is so stressed out that she is worried the pain will come back worse. Yesterday, though she was only doing reading, there were a lot of tears. She kept saying how overwhelming it all was. The fact that she has now missed two more days will not make the rest of this week easier. She told me that she is struggling to find motivation and wants to avoid it, because it feels so overwhelming. Much like starting the outpatient RND program. She was counseled to do 2 to 5 hours of exercise (Insanity workout type) a day, but she could not find the motivation to do that much. It was such a daunting task. It is the same with coming home.
In the hospital, they do have schoolwork, but realistically they budget a half hour to an hour in the schedule to go to the school room. Zoralei was expected to do it in the evenings, but she was tired, hurting, and overwhelmed emotionally with the program and often rather find solace in being with people than doing schoolwork. So generally, the only work done was what she found time to do during the hospital's scheduled homework time slot. It would be good if they made that at least two hours. She would not have been nearly as far behind in 6 classes as she was when she got out of the homework,including some that are honors and thus involve a lot of work. It would have made this second and third week easier.
We decided to offer driver's education as an incentive to get the makeup work done. We really feel like if that is out of the way then she concentrate at the at home program and let some of the stress go. Today she managed to do a lot of makeup work without any more tears. It helped to have something she has wanted to do for a while as an incentive. I was impressed with two and a half weeks home, we have only had one spell involving tears over all the makeup work. Still, trying to adjust to an at home workout program and desensitization as well as do 3 weeks of makeup work for school is a lot. It is like she is forced to keep making choices between good things: homework or at home program or sleep? None of them seem like really good things to have to sacrifice. Talk about impossible to avoid stress. . . I suspect it is part of the reason she got sick.
As she cried, she was able to express some pent up emotion about being overwhelmed with the work load, about not feeling a 100% and yet still having so much to do, about wanting to avoid the makeup work and wishing her teachers would understand that there is other classes she has work to do in and to stop pressuring her to get their work in, and about feeling worried and guilty about not getting her at home exercise in sometimes. There is a lot of emotion about her condition and her state and does not include anything about her father's health issues either. There was just the emotions about her own stress. Zoralei has not talked about any of these emotions until she broke down and became ill. I think it was a good release as she seemed to handle it better afterwards, but I would still like to get to the point where we don't have to breakdown to express those emotions.
I know that another two days sick and unable to do her at home exercise program will not make it harder for her to get back into it. She is already finding that a struggle. I still believe they released her a week early. She had just gotten to the point, she was enjoying pushing herself in exercise and then they sent her home to do it on her own and I think the brief glimpse of desire was not quite enough to establish a habit. Though I am glad she did not have another week of makeup work.
In the hospital, they do have schoolwork, but realistically they budget a half hour to an hour in the schedule to go to the school room. Zoralei was expected to do it in the evenings, but she was tired, hurting, and overwhelmed emotionally with the program and often rather find solace in being with people than doing schoolwork. So generally, the only work done was what she found time to do during the hospital's scheduled homework time slot. It would be good if they made that at least two hours. She would not have been nearly as far behind in 6 classes as she was when she got out of the homework,including some that are honors and thus involve a lot of work. It would have made this second and third week easier.
We decided to offer driver's education as an incentive to get the makeup work done. We really feel like if that is out of the way then she concentrate at the at home program and let some of the stress go. Today she managed to do a lot of makeup work without any more tears. It helped to have something she has wanted to do for a while as an incentive. I was impressed with two and a half weeks home, we have only had one spell involving tears over all the makeup work. Still, trying to adjust to an at home workout program and desensitization as well as do 3 weeks of makeup work for school is a lot. It is like she is forced to keep making choices between good things: homework or at home program or sleep? None of them seem like really good things to have to sacrifice. Talk about impossible to avoid stress. . . I suspect it is part of the reason she got sick.
As she cried, she was able to express some pent up emotion about being overwhelmed with the work load, about not feeling a 100% and yet still having so much to do, about wanting to avoid the makeup work and wishing her teachers would understand that there is other classes she has work to do in and to stop pressuring her to get their work in, and about feeling worried and guilty about not getting her at home exercise in sometimes. There is a lot of emotion about her condition and her state and does not include anything about her father's health issues either. There was just the emotions about her own stress. Zoralei has not talked about any of these emotions until she broke down and became ill. I think it was a good release as she seemed to handle it better afterwards, but I would still like to get to the point where we don't have to breakdown to express those emotions.
I know that another two days sick and unable to do her at home exercise program will not make it harder for her to get back into it. She is already finding that a struggle. I still believe they released her a week early. She had just gotten to the point, she was enjoying pushing herself in exercise and then they sent her home to do it on her own and I think the brief glimpse of desire was not quite enough to establish a habit. Though I am glad she did not have another week of makeup work.
Saturday, October 18, 2014
The second week has been harder
Zoralei has struggled this week to make time to fit in her at home exercise program. An hour of exercise and a half hour of desensitization each day with church commitments, lots of homework, the normal day to day of showers/meals/chores, and then add trying to be a social teenager; it's a lot to try to make happen between the hours of 3:15 pm and 10 pm each evening. She missed a two days. On one particular afternoon, she had early outs from school and a friend was supposed to come over, but cancelled without telling Zoralei. They are planning a church event together so this was particularly stressful to Zoralei as things are now left undone. Zoralei spent the whole afternoon waiting on the friend and did not get her stuff done. Then she felt badly that she did not get it done and of course, we talked about putting first things first and her health is first.
Thereafter, she has been trying to be better, but she said it is a lot and when it is basketball practice on Tuesdays, that is fun because she is interacting with people. Other days not so much because she is trying to do these exercises she was taught at the hospital alone and it is not as motivating for her. I believe the trick is to find a sport or gym class or friend to exercise with that she enjoys. If she can do that, she will have a lot more fun with it. Of course, she still places limits: I do not like timed activities, only numbers of repetitions. I do not like going to the gym, because the elliptical does not offer variety like different kind of exercises do. Those kind of excuses are limiting and we are working to push past them and recognize that it is her attitude that will equal success. She recognizes them as success, but it is also important to find some way to exercise that is enjoyable as it will mean success in the long term when the pain is gone. With her still being in pain, there is a motivation to continue, but when the pain hopefully goes away, she will find it more difficult to sustain if she cannot find a way to love what she is doing.
The main motivator that she continues to use is to see how her muscles have really developed and using their improved changes as a gauge to measure her success. This is excellent I think since there still is pain so becoming pain free has not been the reward we have been hoping for.
One other thing I noticed is that after Wednesday when her friend did not come and Zoralei's life was on hold waiting for this friend, that she began complaining again about doing some of the things we asked. It was not as prevalent as it was before she went into the hospital and did not have any emotional outbreaks either, but there was this undertone whiny feeling. As soon as the disappointment and stress set in, Zoralei began to revert to some old ways of responding. I could see an immediate change at how her stress affected her ability to take care of herself by completing her exercises and her reactions to the outside stressors, and could see how if the trend continued then Zoralei's pain could become magnituded just because overall she was in a 'negative' focus on life.
Despite being a bit more whiny, Zoralei was easy to talk to about it and point it out to which has been a definite change since the program. She was not all defensive, admitting that she had noticed it too and was planning to work on it. She even talked to me about how upset she was that she was letting people down by not being able to get things done for this event as she committed too. She took the time to share those feelings and once she did, she was able to get back into doing her at home exercise program. A little complaining still existed, but she did not stagnate, choosing to move forward instead.
Thereafter, she has been trying to be better, but she said it is a lot and when it is basketball practice on Tuesdays, that is fun because she is interacting with people. Other days not so much because she is trying to do these exercises she was taught at the hospital alone and it is not as motivating for her. I believe the trick is to find a sport or gym class or friend to exercise with that she enjoys. If she can do that, she will have a lot more fun with it. Of course, she still places limits: I do not like timed activities, only numbers of repetitions. I do not like going to the gym, because the elliptical does not offer variety like different kind of exercises do. Those kind of excuses are limiting and we are working to push past them and recognize that it is her attitude that will equal success. She recognizes them as success, but it is also important to find some way to exercise that is enjoyable as it will mean success in the long term when the pain is gone. With her still being in pain, there is a motivation to continue, but when the pain hopefully goes away, she will find it more difficult to sustain if she cannot find a way to love what she is doing.
The main motivator that she continues to use is to see how her muscles have really developed and using their improved changes as a gauge to measure her success. This is excellent I think since there still is pain so becoming pain free has not been the reward we have been hoping for.
One other thing I noticed is that after Wednesday when her friend did not come and Zoralei's life was on hold waiting for this friend, that she began complaining again about doing some of the things we asked. It was not as prevalent as it was before she went into the hospital and did not have any emotional outbreaks either, but there was this undertone whiny feeling. As soon as the disappointment and stress set in, Zoralei began to revert to some old ways of responding. I could see an immediate change at how her stress affected her ability to take care of herself by completing her exercises and her reactions to the outside stressors, and could see how if the trend continued then Zoralei's pain could become magnituded just because overall she was in a 'negative' focus on life.
Despite being a bit more whiny, Zoralei was easy to talk to about it and point it out to which has been a definite change since the program. She was not all defensive, admitting that she had noticed it too and was planning to work on it. She even talked to me about how upset she was that she was letting people down by not being able to get things done for this event as she committed too. She took the time to share those feelings and once she did, she was able to get back into doing her at home exercise program. A little complaining still existed, but she did not stagnate, choosing to move forward instead.
Monday, October 13, 2014
Zoralei's Identity
I write this separate, even though I blogged for today, but it is an important piece of the puzzle for Zoralei. Through all the endometriosis and subsequent RND, Zoralei has been in pain for so long that it has become the defining element of her life. All her experiences with doctors, their callous approach to what she was experiencing has defined her faith in the program and even in how those around her might be there for her. It has contributed to her dismissiveness towards emotions. It has been the main thing she has talked about in all her conversations. As a matter of fact, most teenagers don't even approach challenges healthwise that she has gone through and to some degree, she has struggled to be empathetic to them in their challenges.
Now, despite still experiencing the pain of RND, she has been taught that pain is not the defining characteristic of her life. She has had to learn to enjoy her life, to figure who she is without being in pain. Pain is no longer the limiting factor for physical activity. As a matter of fact, previous to this diagnosis, she would not have joined the church basketball team, but when they started last week, she joined up. She was in so much pain before that she wouldn't write, though she is an amazing writer. But she is writing again. The only limit for writing is finding time with makeup work and other commitments to do so, rather than it hurts too much to do it.
It changes how she sees herself in relationship to others. Her life is no longer worse off than theirs because there is no limits to what she is doing now. She has to learn to talk about other things as important and yet none are quite so dramatic or all encompassing as the pain and so learning to communicate without all the drama or the one-sidedness is its own challenge.
I think she is doing well in the transition, at least outwardly. Sometimes though she seems tired and unsure as if trying to figure it all out does take its toll.
Now, despite still experiencing the pain of RND, she has been taught that pain is not the defining characteristic of her life. She has had to learn to enjoy her life, to figure who she is without being in pain. Pain is no longer the limiting factor for physical activity. As a matter of fact, previous to this diagnosis, she would not have joined the church basketball team, but when they started last week, she joined up. She was in so much pain before that she wouldn't write, though she is an amazing writer. But she is writing again. The only limit for writing is finding time with makeup work and other commitments to do so, rather than it hurts too much to do it.
It changes how she sees herself in relationship to others. Her life is no longer worse off than theirs because there is no limits to what she is doing now. She has to learn to talk about other things as important and yet none are quite so dramatic or all encompassing as the pain and so learning to communicate without all the drama or the one-sidedness is its own challenge.
I think she is doing well in the transition, at least outwardly. Sometimes though she seems tired and unsure as if trying to figure it all out does take its toll.
Over a week and I see the blessings of the program
I have been amazed at the changes I have seen as a result of the program. The first weekend had some sullenness, tiredness, and generally just frustrated to get back in the habit of chores and expectations without a nurse bringing soda at the ring of a button. Of course, missing people you met there and having a bunch of makeup work did not help!
But as things settled into a routine, there were things that were distinctly different from before Zoralei went into the program.
Three weeks of makeup homework is a lot, especially with Honors classes. When Zoralei had endometriosis and missed months of school, the makeup period was excruciating. There were a lot of tears on her part and nagging on mine. And yet, there has been none of that. She has become so productive at using her time and not complaining about her work load. She had a moment where she complained of some constipation, rubbing her belly and looking for sympathy. We suggested miralax and she went off to do more homework. No fanfare. No accusations of not caring about her ailment. No avoidance of the assignment because her stomach hurt. I was completely impressed. She comes home from school and gets to it. There is so much less drama than there was before.
She has been a lot more respectful. Previous to going the program, Zoralei was a big arguer. She would argue or negotiate just about anything. It created a lot of contention at times as we had to be firm in what she was asked to do, but she wanted to find a way out of it. She is not doing that. Sure, she will state her thoughts about something, but it does not take a half hour to get to the point where she agrees to do it. The conversations go smoother and quicker.
Zoralei is not a big exercise person. Sure, she loves to play basketball with a friend, but will avoid a video workout or going to the gym. Now she has to exercise daily and there isn't always an opportunity to go be active with friends. Each day she gets her exercise done and does what she needs to do for desensitization. It has been a struggle to fit in an hour and a half a day. Yet, Zoralei has done it. Once or twice, she admitted that she dislikes it. It feels like a burden. It isn't exactly fun. But she is stronger, showing how she can now almost do a handstand and other such feats. She puts first things first so much better than before. This was a struggle before she left. Zoralei is very social and sometimes that is the the thing that takes precedent and other things fall to the wayside or are only accomplished by sacrificing sleep, which inevitably results in moodiness. But Zoralei makes use of her time, watching a lot less tv.
Now that said, she had Friday off of school and between Friday and Saturday, she had 4 different social engagements. She does not know how to stay home very well still and we did have to have a talk about striking a better balance. Between trying to do the teenage thing with each of her friends and doing homework/home exercise program, Zoralei is very busy and the cost really has been time with us. We do not see her a lot and we are trying to ask her to make some time for us. She is only 15 and family is important. So despite these amazing changes I have seen, she is still very much a teenager.
I have seen an increase in compassion. The kids Zoralei met at the hospital left an impact. There were four of them who became very close to each other. They all came together on Friday to visit with the one girl who was still at the hospital. One of the girls had to travel an hour to get there. These kids have truly left an impact. She talks about them all the time. She arranged for them to all come together, so the one would not feel left behind. Zoralei has always been good about doing things for her friends, attending church service projects, but I have not seen her go through so much effort or talk so much about the struggles of others, rather than just talking about what she is experiencing in her own body. It has been a mother's dream come true. I love the depth of her caring. I love how she is making time to give, rather than only focusing on the work she needs to get done or going to a movie/play basketball with friends. She is choicing instead to uplift someone, not just to have fun with them and I feel blessed to see the difference she is making. I feel blessed to see the difference that they made for her.
Zoralei still struggles to want to talk about emotions. She will tell you how she feels, but it is ever a one sentence conversation, though it can be rather blunt and sometimes hurtful. She does not want to delve into another's emotions and she does not want questions about her own feelings. This has not really changed. What has changed is that I do not feel like she is expressing her emotions via lashing out with frustration or anger and yet then refusing to talk about them or address them in a productive manner. She will state how she feels and sometimes she needs a minute to deal with a change in plan, but there is no drama coming. There would have been a lot of anger before. An example of something small, that was very big. Zoralei had to go to a party for a friend. We are a one car family. We were taking the kids swimming and found that we were late for the swimming in picking people up. Zoralei, of course, was already a half hour late. We made the decision that if we wanted any time to swim that we needed to drop mom and kids off at the pool first and Zoralei would be last to be dropped off. It made her at least an hour late, slightly more. Zoralei sighed at the change, but said absolutely nothing. She accepted it gracefully. She did not make comments, snap at us, remark that why did we have to go swimming or anything like that. She simply let us make the change. This small thing isn't small at all. The maturity I have seen in Zoralei has become even more pronounced. She has always seemed older, being the oldest of six at home, but she never has been particularly flexible or go with the flow kind of person. Her sigh told me she wished it could be different, but she did not try to punish us for making the change.
As for pain, I know it stills hurts Zoralei. But I only know this because I have asked. There are no pain behaviors at all. Zoralei no longer focuses on the pain. Between the endometriosis and the RND, Zoralei has been in intense pain for over two years, and this is the first glimpse we see of a girl without pain. There is just no way to know it hurts except by what she tells us.
I have always believed my daughter to be better than I in many ways, but now I see the rough edges that she did have, smoothed out. I do not see a child trying to figure out how to become an adult, I truly can see the person she is going to be as an adult. Truly, three weeks made an incredible difference.
But as things settled into a routine, there were things that were distinctly different from before Zoralei went into the program.
Three weeks of makeup homework is a lot, especially with Honors classes. When Zoralei had endometriosis and missed months of school, the makeup period was excruciating. There were a lot of tears on her part and nagging on mine. And yet, there has been none of that. She has become so productive at using her time and not complaining about her work load. She had a moment where she complained of some constipation, rubbing her belly and looking for sympathy. We suggested miralax and she went off to do more homework. No fanfare. No accusations of not caring about her ailment. No avoidance of the assignment because her stomach hurt. I was completely impressed. She comes home from school and gets to it. There is so much less drama than there was before.
She has been a lot more respectful. Previous to going the program, Zoralei was a big arguer. She would argue or negotiate just about anything. It created a lot of contention at times as we had to be firm in what she was asked to do, but she wanted to find a way out of it. She is not doing that. Sure, she will state her thoughts about something, but it does not take a half hour to get to the point where she agrees to do it. The conversations go smoother and quicker.
Zoralei is not a big exercise person. Sure, she loves to play basketball with a friend, but will avoid a video workout or going to the gym. Now she has to exercise daily and there isn't always an opportunity to go be active with friends. Each day she gets her exercise done and does what she needs to do for desensitization. It has been a struggle to fit in an hour and a half a day. Yet, Zoralei has done it. Once or twice, she admitted that she dislikes it. It feels like a burden. It isn't exactly fun. But she is stronger, showing how she can now almost do a handstand and other such feats. She puts first things first so much better than before. This was a struggle before she left. Zoralei is very social and sometimes that is the the thing that takes precedent and other things fall to the wayside or are only accomplished by sacrificing sleep, which inevitably results in moodiness. But Zoralei makes use of her time, watching a lot less tv.
Now that said, she had Friday off of school and between Friday and Saturday, she had 4 different social engagements. She does not know how to stay home very well still and we did have to have a talk about striking a better balance. Between trying to do the teenage thing with each of her friends and doing homework/home exercise program, Zoralei is very busy and the cost really has been time with us. We do not see her a lot and we are trying to ask her to make some time for us. She is only 15 and family is important. So despite these amazing changes I have seen, she is still very much a teenager.
I have seen an increase in compassion. The kids Zoralei met at the hospital left an impact. There were four of them who became very close to each other. They all came together on Friday to visit with the one girl who was still at the hospital. One of the girls had to travel an hour to get there. These kids have truly left an impact. She talks about them all the time. She arranged for them to all come together, so the one would not feel left behind. Zoralei has always been good about doing things for her friends, attending church service projects, but I have not seen her go through so much effort or talk so much about the struggles of others, rather than just talking about what she is experiencing in her own body. It has been a mother's dream come true. I love the depth of her caring. I love how she is making time to give, rather than only focusing on the work she needs to get done or going to a movie/play basketball with friends. She is choicing instead to uplift someone, not just to have fun with them and I feel blessed to see the difference she is making. I feel blessed to see the difference that they made for her.
Zoralei still struggles to want to talk about emotions. She will tell you how she feels, but it is ever a one sentence conversation, though it can be rather blunt and sometimes hurtful. She does not want to delve into another's emotions and she does not want questions about her own feelings. This has not really changed. What has changed is that I do not feel like she is expressing her emotions via lashing out with frustration or anger and yet then refusing to talk about them or address them in a productive manner. She will state how she feels and sometimes she needs a minute to deal with a change in plan, but there is no drama coming. There would have been a lot of anger before. An example of something small, that was very big. Zoralei had to go to a party for a friend. We are a one car family. We were taking the kids swimming and found that we were late for the swimming in picking people up. Zoralei, of course, was already a half hour late. We made the decision that if we wanted any time to swim that we needed to drop mom and kids off at the pool first and Zoralei would be last to be dropped off. It made her at least an hour late, slightly more. Zoralei sighed at the change, but said absolutely nothing. She accepted it gracefully. She did not make comments, snap at us, remark that why did we have to go swimming or anything like that. She simply let us make the change. This small thing isn't small at all. The maturity I have seen in Zoralei has become even more pronounced. She has always seemed older, being the oldest of six at home, but she never has been particularly flexible or go with the flow kind of person. Her sigh told me she wished it could be different, but she did not try to punish us for making the change.
As for pain, I know it stills hurts Zoralei. But I only know this because I have asked. There are no pain behaviors at all. Zoralei no longer focuses on the pain. Between the endometriosis and the RND, Zoralei has been in intense pain for over two years, and this is the first glimpse we see of a girl without pain. There is just no way to know it hurts except by what she tells us.
I have always believed my daughter to be better than I in many ways, but now I see the rough edges that she did have, smoothed out. I do not see a child trying to figure out how to become an adult, I truly can see the person she is going to be as an adult. Truly, three weeks made an incredible difference.
Saturday, October 4, 2014
At home at last
Zoralei came home last night! My husband and her friends arrived to pick her up during a nursing shift change, so it took a while to get out of there, but they did finally. She was so excited to sleep in her own bed she said. Definitely, in good spirits.
She actually went to bed relatively early for her on a Friday night. She was tired, worn down emotionally as well as physically. I think earlier bedtimes at the hospital contributed to that as well. I think it was the first Friday night in years where she was not asking me to bring friends home just before midnight.
This morning Zoralei was a bit weighed down. Some of the other residents she met at the hospital were posting missing her comments on facebook and that she was missing her friends, especially one who felt really alone having been left behind by her three friends who were released.
She was a bit grumpy with me as I talked about my emotions regarding parenting her other siblings. Too emotional for her, so we had a talk about having compassion for others' struggles that are different than hers and recognizing that though she may be wired a certain way, others may not respond to life as she does and she has to strive not to become the dismissive voice that she had undergone for years with her pain issues. She expressed her frustration with me that I experience life through my emotions. Simply put, when I am stressed, she feels stressed and wants to avoid that stress especially since stress aggravates the RND. This will be difficult because the older I get, the more I have learned how important it is to express my emotions and Zoralei finds that outside her comfort zone because she cannot control emotions. I told her I can try not to be emotional when expressing my emotions, but the fact is that it is okay if I am not a carbon copy of her and her dad who are not emotionally based. A good relationship with me will let me express things that I need too and that she would have to learn to allow me to be myself without reacting to my feelings about things that have nothing to do with her. Just as I have to listen to long discussions of what boys in class did or such teenage things that are not interesting to me personally, it is the nature of being in a relationship and accepting the person for who they are. One thing I noticed during the past couple years of pain, is that the worst the pain became and the longer it went on, the more Zoralei became less compassionate towards other's struggles, almost seeming to treat them as if nothing could possibly compare to hers. She treated their concerns, especially if they just seemed to be emotionally based as trivial in nature. Considering what she went through, I certainly understand that hers in many ways was the more obvious and debiliating struggle, yet it became extreme too, resulting in her not wanting to deal with any other's struggle unless it was over with quickly.
I wonder if the whole stereotypical mother/daughter teenage relationship contributes to issues of RND. After all, that can be a rocky period. Logically, it all makes sense. If she is not an emotional person and I am, that can be a huge challenge for the relationship. It will be interesting if this will prove to be a problem for her RND or if she will use RND to try to avoid emotional discussions with me. I will have to figure out how to make accommodations beyond what I have already have, without sacrificing who I am either since my emotional awareness is a strength in my ability to parent and to serve others.
Zoralei also expressed she had a rough night sleeping, that she missed her friends and was worried about trying to find her groove at home, especially one that included her home exercise equipment. This probably too personal thing to talk about or even too philosophical, but Zoralei's avoidance of emotions and other's emotions is a huge issue in our relationships with her and how she de-stresses. Emotions stress her out and she does not know how to keep them from taking them on. They are out of her control and the fact that I see the world through people's emotional reactions causes her to get easily frustrated with me and hence results in me questioning her response to me and then we go in this cycle that is stressful. It is important that Zoralei can learn to see emotions as non-threatening.
One thing that was interesting and exciting was the fact she is considering being a physical therapist. She loves creating exercise programs and was told she was very good at it. We have figured with all the pain issues that a medical profession probably made sense as she has more experience than most and hopefully could appreciate the need to look outside of the box and to listen to the patient to truly understand what was going on. It sounds like she found a direction while in the RND program. I was excited about it because it will help her to continue to push herself physically in order to eventually become pain free, to help her to remain healthy and strong and avoid new episodes of RND.
She received a basket of goodies yesterday. Some contained little party favors. One small toy car became the perfect desensitization tool. She spent quite a while running the car across her arm to desensitize it. I also suggested she might find the foam roller a good tool for desensitization as well. It is interesting to realize it is a matter of thinking differently, of seeing things for potential uses they did not have before.
I mentioned paint balling for fun and she got very excited. I am sure she wants to paint ball as a fun connection to friends, but immediately she was talking about how it would be a good desensitization activity. This is a definite change. She would not have been insisting we go do that activity asap before she went in to the hospital. It will be interesting to see what other changes are coming.
She actually went to bed relatively early for her on a Friday night. She was tired, worn down emotionally as well as physically. I think earlier bedtimes at the hospital contributed to that as well. I think it was the first Friday night in years where she was not asking me to bring friends home just before midnight.
This morning Zoralei was a bit weighed down. Some of the other residents she met at the hospital were posting missing her comments on facebook and that she was missing her friends, especially one who felt really alone having been left behind by her three friends who were released.
She was a bit grumpy with me as I talked about my emotions regarding parenting her other siblings. Too emotional for her, so we had a talk about having compassion for others' struggles that are different than hers and recognizing that though she may be wired a certain way, others may not respond to life as she does and she has to strive not to become the dismissive voice that she had undergone for years with her pain issues. She expressed her frustration with me that I experience life through my emotions. Simply put, when I am stressed, she feels stressed and wants to avoid that stress especially since stress aggravates the RND. This will be difficult because the older I get, the more I have learned how important it is to express my emotions and Zoralei finds that outside her comfort zone because she cannot control emotions. I told her I can try not to be emotional when expressing my emotions, but the fact is that it is okay if I am not a carbon copy of her and her dad who are not emotionally based. A good relationship with me will let me express things that I need too and that she would have to learn to allow me to be myself without reacting to my feelings about things that have nothing to do with her. Just as I have to listen to long discussions of what boys in class did or such teenage things that are not interesting to me personally, it is the nature of being in a relationship and accepting the person for who they are. One thing I noticed during the past couple years of pain, is that the worst the pain became and the longer it went on, the more Zoralei became less compassionate towards other's struggles, almost seeming to treat them as if nothing could possibly compare to hers. She treated their concerns, especially if they just seemed to be emotionally based as trivial in nature. Considering what she went through, I certainly understand that hers in many ways was the more obvious and debiliating struggle, yet it became extreme too, resulting in her not wanting to deal with any other's struggle unless it was over with quickly.
I wonder if the whole stereotypical mother/daughter teenage relationship contributes to issues of RND. After all, that can be a rocky period. Logically, it all makes sense. If she is not an emotional person and I am, that can be a huge challenge for the relationship. It will be interesting if this will prove to be a problem for her RND or if she will use RND to try to avoid emotional discussions with me. I will have to figure out how to make accommodations beyond what I have already have, without sacrificing who I am either since my emotional awareness is a strength in my ability to parent and to serve others.
Zoralei also expressed she had a rough night sleeping, that she missed her friends and was worried about trying to find her groove at home, especially one that included her home exercise equipment. This probably too personal thing to talk about or even too philosophical, but Zoralei's avoidance of emotions and other's emotions is a huge issue in our relationships with her and how she de-stresses. Emotions stress her out and she does not know how to keep them from taking them on. They are out of her control and the fact that I see the world through people's emotional reactions causes her to get easily frustrated with me and hence results in me questioning her response to me and then we go in this cycle that is stressful. It is important that Zoralei can learn to see emotions as non-threatening.
One thing that was interesting and exciting was the fact she is considering being a physical therapist. She loves creating exercise programs and was told she was very good at it. We have figured with all the pain issues that a medical profession probably made sense as she has more experience than most and hopefully could appreciate the need to look outside of the box and to listen to the patient to truly understand what was going on. It sounds like she found a direction while in the RND program. I was excited about it because it will help her to continue to push herself physically in order to eventually become pain free, to help her to remain healthy and strong and avoid new episodes of RND.
She received a basket of goodies yesterday. Some contained little party favors. One small toy car became the perfect desensitization tool. She spent quite a while running the car across her arm to desensitize it. I also suggested she might find the foam roller a good tool for desensitization as well. It is interesting to realize it is a matter of thinking differently, of seeing things for potential uses they did not have before.
I mentioned paint balling for fun and she got very excited. I am sure she wants to paint ball as a fun connection to friends, but immediately she was talking about how it would be a good desensitization activity. This is a definite change. She would not have been insisting we go do that activity asap before she went in to the hospital. It will be interesting to see what other changes are coming.
Thursday, October 2, 2014
Coming home
It has been a busy couple of days at our house as we have tried to juggle health issues for my husband and Zoralei's hospital stay.
Tuesday, I was conferenced the staff meeting and they told me Zoralei was maxing all her timed activities and was doing very well. They said they still noticed she had a lot of anxious behaviors and asked if she would continue to see the counselor she saw before. I reassured them that she would be doing so. They told me that Zoralei was scheduled to come home on Friday. I personally am concerned it is about a week too early. I have really have barely begun to notice improvement and they are already sending her home. I kind of feel like she needs to make time to assure it sticks. In any case, I am happy to have her come home, but I am wanting to make sure it is successful as I know she is not pain free yet. The hardest part is knowing that she is coming out with almost as much pain as when she came in. At this point, they were having her design a lot of her own programs and were working to prepare her to go home and be independent. We again were told that we could not tell Zoralei we knew she was coming home.
That night I visited with Zoralei and she seemed off. She kept trying to curl up and was anxious for us (her sisters and I) to leave. Apparently, she had startled her monthly and was just not feeling well. We watched the movie with her at the hospital and visited in the room a bit before heading out. She had a long day scheduled the next day. With most of her friends having been discharged and the one girl who was left needed a lot more care, so she was not quite as flexible to visit or roam the halls, Zoralei seemed a little lonelier too. I asked her if she had any sense of when she might go home and how the staff thought she was doing. She said she believed it would be in about a week. She did not feel quite ready to go home and felt there was other things she still had yet to learn, but that she was very close and felt the approval of the staff for her progress.
The next afternoon, Wednesday, I received a call from the occupational therapists. They wanted to know with everything going on if Zoralei would have time to do her at home workout. I reassured them that Zoralei was very independent, was not a built in babisitter, and that if she did not accomplish her workout, it reflected that it was not her priority or it was poor time management on her part. I found it interesting that this is the 2nd time where because Zoralei is the oldest at home, they seem to suggest that we do not allow her time and space. Ironically, Zoralei is hardly around (one of our big beefs with her) and so the issue is not how demanding of her we are. Obviously, between the concern expressed over whether she would still be seeing a counselor and the concern about whether we would make sure she takes care of herself at home, there is some hesitancy about releasing her. Ironically, I have the same concerns, but I suspect they will go forward anyhow, especially with me assuring them their concerns are not a problem. My concern is more that they are releasing her too soon - not giving her enough time for the progress to become a habit. I did call back and leave a message that there needs to be emphasis on time management and even sacrificing things sometimes for her own sake. For instance, refusing to change the laundry around for me because she has to do her at home workout simply so she can go out with friends for 3 hours is not likely to be permitted here. She will need to change the laundry around, do her at home workout, and settle for a mere two hours with her friends, something Zoralei has never been good about doing. I am leary that the at home workout does not become the catalyst for Zoralei trying to not be involved in the family since as a teenager, she finds plenty of reasons to have to do her own thing.
Wednesday, Eric went up to the hospital and visited Zoralei. He brought the boys with him to the hospital. Zoralei brought everyone an ice cream sandwich and Eric said she seemed to be in a good mood. She says she finally feels like she is in a groove. Of course, when I called, she did not have much to say because she does not like to talk on the phone.
Today, Zoralei called mid-day to let me know that they told her she was going home. She felt it was too soon and planned to tell the counselor so. When I saw her tonight, nothing had changed. She was still coming home tomorrow and was having very mixed emotions about it. She was really going to miss people, was sad for her one friend who now was losing Zoralei too, did not like how abruptly they changed it as she had no time to adjust and get used to it, and would miss the undivided attention of the nurses and specialists. We have a big family and we work hard to meet everyone's needs, including giving a lot of time to Zoralei, but realistically, she is not the center of our household and that has been hard for our older girls, whose age differences from the rest of our kids has allowed them to experience being an only child for a while. It was with a heavy heart that Zoralei prepared to say goodbye, already asking when she could come visit her friend who was still here.
I attempted to talk about feelings and Zoralei immediately got annoyed with me, saying I like to talk about feelings too much. There was a moment when she went for a walk and I stayed in the room to pray and eventually call her dad about our disagreement. She came in when I had begun to talk to her dad and so I hung up. She apologized and said she just feels like my perspective is too much from the feeling side for her taste. We talked briefly about how she wants everything, including conversations to be about subjects that make her comfortable or for the person to share their experiences only in ways that make Zoralei comfortable - that she has been like this since she was a little girl and spent basically 5 years as an only child since her older sister mostly lived with her biological mother. Zoralei was used to the world revolving around her. Even now, with such an age gap, there are many privileges and things she does that the other kids do not do. Everything her brothers do are almost always done with her other brothers and same thing for her younger sisters, but Zoralei does not have anyone to share with and sometimes having to share has proved challenging for her. Zoralei actually thanked me for giving her a perspective she did not have. At first, I thought she was being sarcastic as I feel we have said this before in some fashion. But she was genuine and said she had not thought about how she really did like things to revolve around her and that was eye opening. We pretty much moved to a different topic at that point, but I felt like it was a real indication about how Zoralei was working on being more open about her feelings so she could cope with them better and more aware of others as to be a little less focused on herself and ultimately how much she hurt. We walked to get food with her friend and then Zoralei and I played UNO. I do wish sometimes I was a bit more superficial as my daughter prefers that, but I appreciated how Zoralei opened up about her emotions about leaving, even though she cried and I am sure felt vunerable.
One thing Zoralei said that was the biggest struggle is that she was not pain free. She came in at a level 8 pain and was only leaving at a level 6 to 7. Today they blind folded her and shot nerf guns at her arms and randomly brushed up against her without her knowledge. She said it was extremely painful. She said she planked with a ball under her legs for a solid 25 minutes while playing a card game with the others in the room. It all hurt, but she could do it. It was hard for her to envision that after 3 weeks the pain had lessened only slightly that it was really going to go away and that although they said she would probably not be pain free, she figured she would be at least a 3 to 4 level. I agree, it is the hardest part to deal with. I recognize their whole goal is simply coping better, but realistically as a parent, you want to see your child free of pain, you want to see the cure and considering how physically demanding this program is and how emotionally draining it is (as Zoralei talked about in detail tonight), you would hope the results are truly worth it and provide the maximum benefit of pain free. It is not so and it is a bit of a let down.
Zoralei said she talked today about perspective. She said if you fill a glass, it is half full, but if you have just drunk it then you would consider it half empty. It isn't just a matter of how you say something, it really is the circumstances that change the perspective. I think that is very true and as she has tried to learn to change what she talks about, saying things like how uncomfortable it is, rather than it is painful, that perspective matters greatly.
They said when Zoralei entered the program, she would be begging us to take home. She never did that, knowing that we said we could not respond to such remarks. However, they also said when she left she would absolutely love those she worked with. She told me she felt just yesterday she had gotten to the point with one of her caregivers that the caregiver seemed to actually like her and was not just being all business like. There has definitely been a shift in how Zoralei perceives them and even those she felt were a bit callous in the beginning are being talked about in a different manner - her impression of them has shifted as she has triumphed and they have praised her for how hard she has worked, how fit and strong she seems. The more she accomplished, the more she was able to feel their encouragement (to acknowledge probably what was always there) and to thrive under it and connect with them, mostly. She says there was a couple of staff that she did not completely connect with, but even with them, she had kinder things to say and would defend them if I questioned something she said.
Tuesday, I was conferenced the staff meeting and they told me Zoralei was maxing all her timed activities and was doing very well. They said they still noticed she had a lot of anxious behaviors and asked if she would continue to see the counselor she saw before. I reassured them that she would be doing so. They told me that Zoralei was scheduled to come home on Friday. I personally am concerned it is about a week too early. I have really have barely begun to notice improvement and they are already sending her home. I kind of feel like she needs to make time to assure it sticks. In any case, I am happy to have her come home, but I am wanting to make sure it is successful as I know she is not pain free yet. The hardest part is knowing that she is coming out with almost as much pain as when she came in. At this point, they were having her design a lot of her own programs and were working to prepare her to go home and be independent. We again were told that we could not tell Zoralei we knew she was coming home.
That night I visited with Zoralei and she seemed off. She kept trying to curl up and was anxious for us (her sisters and I) to leave. Apparently, she had startled her monthly and was just not feeling well. We watched the movie with her at the hospital and visited in the room a bit before heading out. She had a long day scheduled the next day. With most of her friends having been discharged and the one girl who was left needed a lot more care, so she was not quite as flexible to visit or roam the halls, Zoralei seemed a little lonelier too. I asked her if she had any sense of when she might go home and how the staff thought she was doing. She said she believed it would be in about a week. She did not feel quite ready to go home and felt there was other things she still had yet to learn, but that she was very close and felt the approval of the staff for her progress.
The next afternoon, Wednesday, I received a call from the occupational therapists. They wanted to know with everything going on if Zoralei would have time to do her at home workout. I reassured them that Zoralei was very independent, was not a built in babisitter, and that if she did not accomplish her workout, it reflected that it was not her priority or it was poor time management on her part. I found it interesting that this is the 2nd time where because Zoralei is the oldest at home, they seem to suggest that we do not allow her time and space. Ironically, Zoralei is hardly around (one of our big beefs with her) and so the issue is not how demanding of her we are. Obviously, between the concern expressed over whether she would still be seeing a counselor and the concern about whether we would make sure she takes care of herself at home, there is some hesitancy about releasing her. Ironically, I have the same concerns, but I suspect they will go forward anyhow, especially with me assuring them their concerns are not a problem. My concern is more that they are releasing her too soon - not giving her enough time for the progress to become a habit. I did call back and leave a message that there needs to be emphasis on time management and even sacrificing things sometimes for her own sake. For instance, refusing to change the laundry around for me because she has to do her at home workout simply so she can go out with friends for 3 hours is not likely to be permitted here. She will need to change the laundry around, do her at home workout, and settle for a mere two hours with her friends, something Zoralei has never been good about doing. I am leary that the at home workout does not become the catalyst for Zoralei trying to not be involved in the family since as a teenager, she finds plenty of reasons to have to do her own thing.
Wednesday, Eric went up to the hospital and visited Zoralei. He brought the boys with him to the hospital. Zoralei brought everyone an ice cream sandwich and Eric said she seemed to be in a good mood. She says she finally feels like she is in a groove. Of course, when I called, she did not have much to say because she does not like to talk on the phone.
Today, Zoralei called mid-day to let me know that they told her she was going home. She felt it was too soon and planned to tell the counselor so. When I saw her tonight, nothing had changed. She was still coming home tomorrow and was having very mixed emotions about it. She was really going to miss people, was sad for her one friend who now was losing Zoralei too, did not like how abruptly they changed it as she had no time to adjust and get used to it, and would miss the undivided attention of the nurses and specialists. We have a big family and we work hard to meet everyone's needs, including giving a lot of time to Zoralei, but realistically, she is not the center of our household and that has been hard for our older girls, whose age differences from the rest of our kids has allowed them to experience being an only child for a while. It was with a heavy heart that Zoralei prepared to say goodbye, already asking when she could come visit her friend who was still here.
I attempted to talk about feelings and Zoralei immediately got annoyed with me, saying I like to talk about feelings too much. There was a moment when she went for a walk and I stayed in the room to pray and eventually call her dad about our disagreement. She came in when I had begun to talk to her dad and so I hung up. She apologized and said she just feels like my perspective is too much from the feeling side for her taste. We talked briefly about how she wants everything, including conversations to be about subjects that make her comfortable or for the person to share their experiences only in ways that make Zoralei comfortable - that she has been like this since she was a little girl and spent basically 5 years as an only child since her older sister mostly lived with her biological mother. Zoralei was used to the world revolving around her. Even now, with such an age gap, there are many privileges and things she does that the other kids do not do. Everything her brothers do are almost always done with her other brothers and same thing for her younger sisters, but Zoralei does not have anyone to share with and sometimes having to share has proved challenging for her. Zoralei actually thanked me for giving her a perspective she did not have. At first, I thought she was being sarcastic as I feel we have said this before in some fashion. But she was genuine and said she had not thought about how she really did like things to revolve around her and that was eye opening. We pretty much moved to a different topic at that point, but I felt like it was a real indication about how Zoralei was working on being more open about her feelings so she could cope with them better and more aware of others as to be a little less focused on herself and ultimately how much she hurt. We walked to get food with her friend and then Zoralei and I played UNO. I do wish sometimes I was a bit more superficial as my daughter prefers that, but I appreciated how Zoralei opened up about her emotions about leaving, even though she cried and I am sure felt vunerable.
One thing Zoralei said that was the biggest struggle is that she was not pain free. She came in at a level 8 pain and was only leaving at a level 6 to 7. Today they blind folded her and shot nerf guns at her arms and randomly brushed up against her without her knowledge. She said it was extremely painful. She said she planked with a ball under her legs for a solid 25 minutes while playing a card game with the others in the room. It all hurt, but she could do it. It was hard for her to envision that after 3 weeks the pain had lessened only slightly that it was really going to go away and that although they said she would probably not be pain free, she figured she would be at least a 3 to 4 level. I agree, it is the hardest part to deal with. I recognize their whole goal is simply coping better, but realistically as a parent, you want to see your child free of pain, you want to see the cure and considering how physically demanding this program is and how emotionally draining it is (as Zoralei talked about in detail tonight), you would hope the results are truly worth it and provide the maximum benefit of pain free. It is not so and it is a bit of a let down.
Zoralei said she talked today about perspective. She said if you fill a glass, it is half full, but if you have just drunk it then you would consider it half empty. It isn't just a matter of how you say something, it really is the circumstances that change the perspective. I think that is very true and as she has tried to learn to change what she talks about, saying things like how uncomfortable it is, rather than it is painful, that perspective matters greatly.
They said when Zoralei entered the program, she would be begging us to take home. She never did that, knowing that we said we could not respond to such remarks. However, they also said when she left she would absolutely love those she worked with. She told me she felt just yesterday she had gotten to the point with one of her caregivers that the caregiver seemed to actually like her and was not just being all business like. There has definitely been a shift in how Zoralei perceives them and even those she felt were a bit callous in the beginning are being talked about in a different manner - her impression of them has shifted as she has triumphed and they have praised her for how hard she has worked, how fit and strong she seems. The more she accomplished, the more she was able to feel their encouragement (to acknowledge probably what was always there) and to thrive under it and connect with them, mostly. She says there was a couple of staff that she did not completely connect with, but even with them, she had kinder things to say and would defend them if I questioned something she said.
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