No sure where it is all headed

Today we spent some time working desensitization with nerf swords. Zoralei has started to try to do more exercise every day.  Driver's Education, Homework, Church Commitments, Choir Concerts, and Friends/Family obligations have made it difficult and nearly impossible most days for her to do her full hour of exercise in every day. Still, she had begun to lose any improvement she gained from the hospitalization and so she has tried to at least do 15 to 30 minutes of exercise a day in the past couple of weeks.  However, she has done very little with desensitization and today was talking about how her pain in her arm was getting worse again.  We got out nerf swords and wacked her arm for a good 10 minutes.  She handled it like a pro.  She did point out that if she was not so good at handling the pain, she would have been screaming very unpleasantly at the time we were hitting her arm. 

The exercises really become the lifeline of progress. The hospital taught coping skills and except for her woman's time of the month, I have seen a lot of progress in how she handles everything.  Unfortunately her issues with endometriosis are compounded by RND and so she does not want to deal with people much during that time.  We missed the appointment with her gynecology doctor because of bad traffic, but I was very interested to see if she thought the RND was really more the culprit for the intense missing school kind of pain she is having during her menstrual cycle or if it really is the endometriosis coming back (I suspect both). It is not as clear cut about what is wrong and whether it is RND related as the doctor indicated it would be.

After the Christmas season, Zoralei is debating doing a sport or doing a school play. So far she is learning towards the school sport as a way to guarantee she gets the exercise, conditioning she needs daily as well as a gym credit for school, though she would rather be in the play.  I think the more opportunities for exercise she can find that feels more enjoyable and less like a chore for exercise, the more likely she is to succeed.  They said it could take a few more months after the hospital to  be pain free, but we have definitely not made a whole lot of progress on that front.

Zoralei's in Driver's Education and I worry if she has a pain episode (sometimes she jars something or moves it wrong and it just really hurts) while driving if it will be safe. However, I know we cannot live our lives in fear of the RND, only find ways in which to not have the worst happen.

Followup tomorrow and the blessing of goals

It is hard to keep up with blogging about the RND, when in essence I know this is just a journaling experience for me.  Perhaps one day someone will find it useful.  I hope so.  In the meantime, it is a good means for me to see the progression, which unfortunately at times feels more like a two steps forward and three steps back journey.

However, now things are doing relatively well. We have Zoralei's six week followup tomorrow with the RND ortho doctor. Zoralei's a bit nervous because exercise is not her major priority much of the time. Right now she is planning a church talent show and that sucks up a lot of her spare time.  Mostly, I think she is embarrassed to report she has not done all that she feels she could have. 

Still, she definitely is not overly dramatic or focused on it as she was before her hospitalization. That has been the biggest change we see. She is establishing goals for herself and telling herself she is able to do something, rather than trying to favor her arm.  I know it still hurts as she tells me it does, but it has not become the crutch in her life.  As a matter of fact, Zoralei learned that having goals and something specific to work towards, gave her life purpose beyond the pain.  She is doing a lot of research about becoming an occupational therapist when she grows up and is looking into what she needs in high school to succeed there.  Honestly, the goal started with winning Driver's Ed and has progressed to planning for her future and she is so much happier. 

We have had another medical setback in our family again. This time a mammogram identified a lump for mom.  The first day Zoralei learned about the lump, she started crying and getting upset whenever her siblings accidentally bumped her.  Immediately, she was telling them they were hurting her.  The next day, she decided to not worry about the lump and when her brother bumped her, she simply asked him to be careful.  It was a completely different response. It is so obvious how stress really does manipulate her focus onto the RND.  Still, any child would naturally be worried, especially when obviously her parents' are.  I was impressed that she just needed a night to process it.  She's been quite patient since.

Zoralei started Driver's Ed tonight. I worry about if she has a massive pain episode, especially like she experienced two weeks ago on her menstrual cycle, that it might render her unsafe at that moment in driving.  Generally speaking, RND doesn't seem like a factor to consider being behind the wheel because when coping well, it does not seem to be an issue, but the spikes on her menstrual cycle were sudden and intense, and perhaps worthy of consideration. It is the combination of RND and possible returning endometriosis that makes it even scarier than when our first teenager drove.  Zoralei says the driving doesn't aggravate her arm, so she is not worried about it.

To the Doctor or Not?

Zoralei started her period yesterday.  The hysterics began. She was not feeling well because of it when she awoke and then she got these terrible spikes of pain in her abdomen and was literally on the floor, crying and screaming.  We plied her with ibuprofen and midol, rubbed her back, and got her a priesthood blessing, all which seemed to help after a few hours.  Still, it was intense.  The spikes of pain were equivalent to what she experienced with the endometriosis and I am worried that may be coming back.  However, both my husband and I were unsure about whether we could say that for certain or if we should be assuming this is just a menstrual cycle exasperated by RND. 

One thing I am somewhat ashamed to admit is that our family has been undergoing such a trial of pain for so long that my first reaction to her falling to the floor, screaming is not to rush to her side to see if it is okay. As soon as I saw her arm wrap around her stomach, my first though was, "Oh no, now what?"  Between the RND and the endometrioses/appendicitis of before, I have almost become callous in my thoughts.  It was not how I acted.  I went over to her rubbed her back and asked if I could do something, but it was not an instantaneous reaction.  I simply share this because dealing with someone in such intense pain and crisis mode for a long period of time shapes us as the caregiver too and not always in ways that we want.  I want to express the compassion that I know I feel for her, but I also do not want to create any additional drama and I have become somewhat numb to it, because it has been happening for so long and is always so intense.  This truly saddens me, even though I am not physically acting on that thought.

Immediately after the Priesthood blessing, Zoralei experienced lessened pain and was able to at least get some homework done while lying in bed..   When we left the hospital, the doctor said I would be able to tell when something was RND and when something was needing some personal attention.  Honestly, it is not so clear cut as that.  I think the RND magnifies everything and hence there is an element in it even when it is something new, making it very difficult to evaluate the seriousness of the situation and the need to take her to see a doctor.  I am afraid to assume it is all RND and miss something important.  Since we had a previous problem, we will seek a gynecologist to get any insights that we can and to verify the endometriosis is not coming back. Still, it was really hard to know if I wasn't being overly sensitive and jumping the gun a bit by going into see a doctor.

She did fine today, only midly grumpy, very understandable with her menstrual cycle.  But we plied her with medicine first thing in the morning to head off some of the crampiness, hoping to keep it to dull threshold. 

An update for last week:  Zoralei came home on Thursday so excited because she had officially finished all her school makeup work and could register for Driver's Education. Things have been much better since that day.  She was a lot happier without the load of the makeup work. She even got some physical exercise in, including playing nerf guns and swords with her siblings and their friends (which she counted as part of her desensitization since it hurt to do).  It is amazing the difference when she is not overly stress.   The stress really does exasperate the RND.

Backtracking

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. 

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.

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.

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.

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.

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.

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.

Sunday means PROGRESS

Zoralei had no schedule at the hospital today. She had to do two at home exercise programs, one specifically had to be done outside of the hospital. Every time she does one of these, a nurse or parent have to sign off to say we are a witness for her to accomplishing the task.  Even though there is no schedule at the hospital, Zoralei still only gets 6 hours.  This was difficult because it meant that she had a lot of waking hours alone at the hospital.

Zoralei wanted to go to church, which goes from 9 to noon. We picked her up at 8:20 am for that and needed to have her back by 2:20, but I did not like the idea of her having the entire afternoon and evening alone.  I just know going back to the hospital yesterday after a leave was very difficult for her and made her very moody.  I expected an afternoon of just thinking about how she wanted to be home again would make it a very long day. So we decided to bring her back between 12:30 and 1 pm and I would drive back out there in the evening and just take her to a local park. Then she can escape for an hour and a half.   We did not bother to come home the 2nd time because that is a half hour drive and in a 15 passenger van, the gas is outrageous.

Zoralei went to the first two hours of church and for the last hour, she came home and did the exercises so we could sign them off before taking her back to the hospital. When we bring her back to the hospital, we have to wait to leave in order to report to the nurse about how our visit went.  So far, I keep seeing Zoralei exhibiting pain behaviors.  She still favors the arm a bit, lets others carry things so she does not have to use her arm, and gets really upset if anyone seems as if they might brush against her arm.  I asked her if the pain was any better, she said, "Yes, a little though it still hurt quite a bit." She said that every new desensitization exercise is like starting over. For instance, she is used to vibration now so she can tolerate it, but if you were to do a new exercise involving a different texture, it feels very much like the first time she did vibration.  It seems each new experience has to be overcome, rather than just getting to the point that her arm is simply doing better overall and not over-responding to things.

The second visit at the park today was the first real progress I saw that the pain behaviors are improving.  I brought her friend with me and she waited in the family lounge while I checked Zoralei out. Then we went to the local park, which is within a half mile of the hospital.  We had a picnic lunch, played a card game, took a ton of selfie pictures, and then played on the play equipment. The most amazing part of this was watching Zoralei on the play equipment. She balanced without fear of falling off and hurting her arm. She spun the merry go round without claiming it was too much for her arm.  I saw a noticeable difference in her desire to do things, to not shy away from the pain.  She was laughing.  Even after spinning the merry go round numerous times, not once did she say that she could not do it anymore.  A couple of weeks ago, this would not have been the case. I felt like I was seeing my daughter pre-pain disposition.  It was such a great time. I thoroughly enjoyed the experience because my daughter was genuinely enjoying herself.

I think she had a greater appreciation for not going back to the 4 walls either.  Something about being outside was rejuvenation and since several of the friends she made at the hospital were released on Friday, I know it was very hard for her to look forward to this week.  Tomorrow's schedule was very heavy, lots of exercise and extra therapies in between so I know that weighed a bit on her.  But she just enjoyed herself and not once tried to cause an argument with me.  This was just an hour and a half of our weekend experience and during other parts of our time together, we saw pain behaviors, but it was encouraging to see that the program was indeed helping her to cope better, to live fully, even if the pain was not significantly lessened.

Our First Leave

The last night we were in San Francisco was particularly hard on Zoralei.  Though the program demands a limited amount of visitors (just immediate family), not being able to have that sense of normalcy and support really through her a curve ball, especially as they were challenging days to meet her goals.  My friend who visited Zoralei for an hour each night said she spent a little time holding Zoralei who was crying that she missed her parents.  Everyone else on the floor is there for a different reason and so they are constantly surrounded by a family member, even during their physical and occupational therapies.  Zoralei does not have that luxury of support and she told me that when they were all talking about how grateful they did not have to do it alone and that their families were so fantastic, it was heart wrenching for her, especially to have us out of town for two days.

On Friday, my husband and I took all the kids to the hospital to see Zoralei.  Originally, we were just going to have one of us go, but I could tell by her complaint that she hasn't seen us for a few days and needed us just like the little ones did, that our being gone had been very hard on her.  When we arrived, she did not like the change in plans as we surprised her and she had already decided what she was going to do with her dad (and half the floor).  But after an initial grumpling, we watched a movie I brought on my laptop and her father took her to the downstairs cafe to get ice cream for everyone as a treat during the movie.  It was a nice visit and ended on a pleasant note.  In part that may have been because she said she had less physical therapy that day and that what she did have was broken up, so it wasn't hours of it in sequence.  She did not seem quite as tired.  In fact, she was bragging about her arm muscles and how buff they seemed to be getting.

Zoralei was very proud that she had maxed almost all her timed activities. That means when you have done them so often, that no matter how many times you do it, you get the same result.  It means you are at max capacity.  Once you max all those activities, you aren't stuck repeating something over and over until you improve.  Also, she is starting to plan some of her own at home (what she does for homework) workout schedules. They are definitely prepping her to be ready to do this on her own. For Sunday, she has to do one of her at home assignments when she is actually on leave from the hospital.

After two weeks, Zoralei still favors her arm so I know there is still pain. When her brother walked by her and almost bumped her, she immediately jerked her arm back and said, "Hey, watch out for my arm."  That happened a couple of times, so I don't think it is merely a habit that has yet to be broken.  I think she is still favoring it.

Saturday came and we got her first leave from the hospital! We picked Zoralei up at 2:20 since her schedule of activities ended at 2 pm and she needed a shower.  We then went to her brother's flag football game and she was able to visit with a friend we had brought with us.  Afterwards, she went to the house where more friends showed up and they chatted on the porch, before we all went out for dinner.  We had six hours to take her out of the hospital.  It went well. Sure, she talked about what she does at the hospital with her friends, but she did not complain of the pain and did not have people fetching things for her or anything. She wasn't necessarily seeking to run a marathon or anything. They just sat and chatted, but overall, I felt it was a great visit.  I could tell how stressful it was to go back to the hospital, because instantly there she got grumpy.  She was snapping at her two younger sisters (who are 4 and 2 and very active), then she started the blame game.  She accused me of driving the nurse away because the nurse came in and asked us how it went, I said it went well and that was it since there was not anything to report and then I turned to say goodbye to Zoralei who told us it was time to go since the nurse came. When I turned back around, the nurse was gone. Somehow I did something?  In any case, my daughter was very cranky, very unhappy to be back in there.

Previous to the grumpy ending note, Zoralei shared a poem about wanting to be free to follow her heart and feeling constrained by others' needs and thoughts. When we talked about what parts of this poem reflected her and who she is outside of the hospital, Zoralei said it is worse in the hospital. She always felt like she was under her parents thumb because she was a child and when she came to the hospital, she felt like outside of the therapies she would need to do, her time and wishes would be her own.  Instead, what she learned was they control everything.  Things like how she could not sit on her bed baffled her and feeling like she has to be regulated in everything has been very challenging for her.  She feels like by being there curtails her freedoms, her ability to be herself has been stripped away.  I did try to get her to look more fully at prior hospitalizaton, and how she likes to be in control and how she hates any kind of authority,as if somehow asking her to change the laundry around is stripping her of her right to choose for herself, but with only 20 minutes and interruptions from smaller sisters and the fact she did not want to talk about that much, we barely touched the surface. I tried ask if that is how she sees her life because she is underage, has other's rules to follow, is unable to do whatever she wants, whenever she wants, and even the fact that there are multiple wants in the family that at times those take precedence. Zoralei told me that she has no problem sharing her feelings, even with the counselor, but that she does not want to dwell on them or talk about them for any length of time. That proves frustrating to her.  I guess the issue is not sharing those feelings, because my children are very open, but allowing her to feel them - to cry if she needs to, to talk about them with the intent of actually taking responsibility for the part she plays, of really just dealing with those emotions so they don't just build up and blow.  I guess watching the interplay of how well she is dealing with her physical pain by not exhibiting a lot of symptoms, but seeing that how she responds to people is a strong indication of how much she is suffering still and hence, seeing the real need for dealing with those emotions.

We are out of town

My husband and I are in San Francisco, meeting with medical specialists on his behalf.  We called the nurse coordinator to let her know about Zoralei being grumpy yesterday, simply because they had told us she was not exhibiting many pain symptoms and we know that when Zoralei acts like that, she is in a great deal of pain!  It is not less by what I can tell, though they seem to be thinking so.  Eric talked to the nurse and asked what we should do if a future occurrence happens. She recommended that we leave and just let the nurse know so that it can go into Zoralei's notes, making the other specialists aware.  We also asked them to encourage her to choose water for drinks. She has access at the hospital to juice and soda, but with so much physical exertion, we are worried that they are not the right drink to have.  She is pretty good at drinking enough water, but we don't do soda and juice at home and so would prefer good habits, not bad ones be established.

At about 6 pm, I called Zoralei to see how her day went.  She said it was the worst yet.  She struggled to beat her time in certain activities, redoing them over and over without luck. What made it even harder was the fact that the small break she receives was forfeited so she could keep trying to beat her previous time.  Her exact words were that 'all she wanted to do was break down.'  She said that I wanted to call you so many times, but I knew I wasn't supposed to. She was buoyed up with the thought that our family friend was coming to visit her.  She got through with positive thoughts of the visit. I was so grateful that they said yes to let her visit. 

One thing we have noticed is that when Zoralei is particularly hurting or wanting sympathy, she immediately heads for his dad.  I am more apt to say that we were told we cannot discuss your pain with you and it will take him a while into the conversation before that occurs to him.  It is interesting to watch the dynamics play out and to have to be cautious about all the interactions going on.

Zoralei told me she was sorry for being so out of sorts the night before, but she is worn out from the intense exercise and she does not want to talk about her feelings anymore.  They are asking her about her feelings, telling her even that they (by they, I really just mean whichever specialist suggested it to her) think she has anxiety  I do not believe my daughter has anxiety. She is a perfectionist though and does not really like to talk about her emotions because she prefers to be in controls and emotions can run away with a person.  But the last word I would use on Zoralei is anxiety.  I think though perhaps that because she is rather offended by the diagnosis that it might help her to seek to prove it wrong and to talk about her feelings more.  I reminded her that we are simply there to help her and have no other intent.  I know she understands intellectually, but sometimes emotionally, it is like she sees us as her enemy.  As the nurse coordinator said, being cranky at their family is very common as they hold it together for so long.  It is however, my least favorite part of dealing with it all.

It probably does not help that she is exhausted from her grueling workout and emotionally opening up and I am exhausted from taking care of two sick family members and the other 5 children.  .  It is a tiring ordeal.

Good and Bad

Today was a mixed day:  positive communication with the team helping her and negative in our dealings with Zoralei.

Eric and I met with the team for our 15 minute meeting.  I did not know what to expect, so I assumed that they would just update us on her progress. Mostly, they wanted to know what our questions were.  They were very open to talking with us.  We did ask how she was doing and learned that physically she was doing so well, but she was resisting discussing her feelings about things.  That led to us talking about our concerns about whether they acknowledge her pain while upset and they shared they are not just sitting there without compassion Rather they are telling her she can do it and trying to provide verbal encouragement, but they do not say anything about her response.  We shared some of Zoralei's comments such as she felt she could not have a bad day or one where she told my husband that she was afraid to share her feelings in case she lost her privileges of hanging with her new friends or leave of absence.  They were concerned that she was overlapping the physical and emotional elements of the program. They want her to verbally talk about how things feel.

At one point, the art therapist said that the way Zoralei painted her picture was very rapid and she wondered how that could be relaxing to Zoralei. I did point out that they are constantly pushing her physically to speed up, increase the repetitions, go go go.  And so it is not surprising that there would be a carry over in the 'relaxation moments.' Plus I am sure Zoralei is simply just trying to not have to spend more than one time on the project.  When she sits down, she wants to accomplish the end result, like her mother. This is similiar to the fact that they have noticed her 'sociability,' to the point where she cannot be left alone. She avoids being a lone. The orthopedic doctor over this case said that we could have someone visit her while we were in San Francisco, however, it must be an adult and that it would be good if she did not come the whole time as they want Zoralei to have some alone time.  My husband and I do not even come for the entire visiting hours. We usually are there for only 2 out of the 4 because we only have one car and have to wait for him to get home from work before one of us can go.  The problem is not the visitor who will surrogate for us, it is Zoralei, who refuses to stay in her room. She insists on running to find friends and do everything in her power to avoid being alone.  Our visitor will only go for an hour to an hour and a half, but I think the doctor's voiced concern is right on.  One of the girls' mothers said she and her daughter was going to rest when I passed in the hall, until she realized that might not work because Zoralei might come by.  The big emphasis is the emotional aspect of everything for Zoralei.  This greatly helped my concerns about the long term affect on Zoralei's relationships.

We talked about how Zoralei was told for a long time her pain was in her head with the endometriosis and her saying that she feels no one validates how challenging it is is representative of the same thing, that Zoralei struggles to face her emotions.  I even told them how hard this was for me as I had to question whether my response was appropriate and such.  They were going to try to clarify things for Zoralei and they said they were questioning how she feels about every aspect of the program. I think feelings are a real challenge for Zoralei, because she does not like things she cannot control and this applies to other's feelings. She shows a distinct lack of empathy and rarely asks us about how we think or feel about anything. She won't even ask what we did today.

I tried to question Zoralei a bit tonight, but she did not want to talk about feelings or the program at all and kept shutting Eric and I down.  As a matter of fact, she tried to tell Eric something, he did not realize she was talking to him and promptly she shut down, refusing to talk to Eric.  I called her on that, pointing out she did not have his attention and punishing him for not knowing she was talking to him is not appropriate behavior.  Furthermore, she was just on everyone, snapping at her brother for playing with my hair and other things not worth being upset about.   Zoralei kept suggesting we leave.  Eric took the kids out first so I could talk to Zoralei about her rude treatment of us.  She watched him leave and yet waited till we were alone, to suddenly jump up and run into the hall, making a scene of, "You weren't going to give me a chance to say goodbye?" and proceeded to hug everyone. As soon as she walked back into the room, she literally tried to change the subject. Anything to avoid the discussion.  I do not let her change it and that frustrates her even more, to the point that after trying several other topic changes, she decides to start opening and closing the door as my signal to leave.  I was not impressed.

Zoralei told me at my insistence that she is very tired.  I tried to relate that I have had to be physically active for a long period of time and that is exhausting. She got angry and informed me that I do not know what she is going through or even what they do there.  I told her if she would finish letting me make my statement, that I was expressing my appreciation about how tired she truly must be and that I understand it is hard not to be grumpy when that tired.  I am worn out after two hours.  Needless to say, she started texting in the middle of the conversation.  I told her that she was being rude. She said she has nothing to talk about and she does not want to talk about her day.  I finally snapped that she could try asking about the other person's day and that people were making a great deal of sacrifice for her and it is reasonable to expect that we all have other things going on with our days besides being at the hospital with her.  She simply replied she doesn't want to know what happens in my day.  She just wanted to beeline out the door and away from me, away from that room.  She complained that her dad acted weird the night before, that the ASL tutor stayed too long and kept her from her friends.  She just wanted to be a cranky pants I think.  I was very frustrated with her scapegoating me, which is typically what she has been doing when she is in pain.  If she bumps her elbow, it was someone else's fault.  In any case, she does not respond well to emotional questions and when she gets really upset about things, she finds a target.  I am leary of letting anyone visit her if she is going to be grumpy with them.  I will call the psychologist tomorrow and ask how we need to proceed in the future with such incidents that would help her the most.  I am worried that they might start limiting her social time.  I recognize the wisdom.  I just do not want to have to deal with how upset she will be about it.

The only positive thing Zoralei said tonight, if she spoke at all was that they lost the sheet with the times of her activities.  So she does not have to beat a score that she does not know. Actually, she doesn't know the score no matter what, because by knowing the score she would create a limit.  If it was 26, she would got to just 27.  But without the times, the staff members do not know the score either so it is still to Zoralei's advantage.

The did give us an approximate time when they thought Zoralei would be released. We are not allowed to tell Zoralei at all of course, so I have decided to pretend I do not know.  I have always thought it would take about a month, so that is what I am sticking too:)

This week began a more grueling workout for Zoralei and I think as the week progresses, she will get more grumpy.  I hope she is friendly to Lori, our visitor tomorrow night.

Self Doubt as a mother

I had emailed the Philadelphia program as well as ordered the dvd on Amplified Pain Disorder.  I was so impressed with the fact that one of their psychologists called back the very next business day. I talked to her about how the kids know which pain in the future to dismiss and which not to dismiss. She said a good rule of thumb is if we are unsure to go have her medically checked out and if there seems to be an issue, it can be addressed and if nothing is found, it can be assumed to be related to RND. Now having had a daughter who spent a year being told nothing was wrong with her and yet all the while she was having problems with appendicitis and endrimetriosis, I appreciate that this formula may not always work, but I appreciated something concrete to help assess a situation rather than just a general assumption that we will just always know when it is RND related.

I also talked to this psychologist generally about how acknowledging someone's pain hinders them from healing.  I gave an example of saying something like, "I can see that really hurts right now, but I know you can get through this.  Just one more repetition.  You can do it!" and then asked her to tell me how that is wrong. She said she would say something similar, without using the word 'pain' (replace pain with discomfort or challenging), but that my example is fine to say.  I said but no one is allowed to acknowledge Zoralei's tears. She explained that the one thing she has seen after 8 1/2 years in the program in Philadelphia is that too much focus on the pain keeps the child locked in the pain and delays the healing. She assumes that this program does not verbally acknowledge the challenge Zoralei is having because they are trying to make sure there is no focus on the pain aspect at all.  I do not entirely understand this as she is sobbing, so obviously Zoralei is very focused on the pain.  I understand they desire to focus on her success to achieve a better time or more repetitions, of finding a way to achieve that in spite of her pain. After all, after a year of pain last time, Zoralei grew very depressed and though we tried to encourage going out with friends (I would plan them and make her go) or working on homework, anything to take her mind off the endometriosis, Zoralei struggled to do those things and the more hindered by her pain she was, the more depressed she became.  In this round of pain, I have a great appreciation for keeping her from letting the pain control her.  I agree with it and appreciate that this program is designed to help my child to find the strength to do that, but I still do not see how it is wrong to verbally, even briefly, acknowledge the person seems to be in pain.

With all the pain Zoralei has endured the past couple of years, I saw the damage that was done by doctors telling her last year's pain episode was all in her head, because it was not possible to medically have the conditions surgery eventually showed she had.  And now she is in a place where they know she is pain, but do not want any acknowledgement that she has it.  We dance around the word pain even. Does using a different word for something make it seem different than it is?  I wonder if we called it what it was and just taught that pain does not limit her.  Would that be enough or does the mere associations made by the word pain encourage a more limiting response?  It is the politically correct terminology necessary?  Is avoiding any validation of the child's struggles essential to the program's success?  I wonder if their goals could be achieved by validating her experience without compromising her need to push past the pain.

I do not know, but when I listen to these things as a parent, I immediately start questioning all that I am doing. Do I coddle too much?  If I ask her how her day was is that too close to the pain issue?  If I offer an arm up after she trips and falls on the floor, am I taking away her independence?  If I am upset to hear my daughter cries 11 times in a day and does not get a single hug or 'I'm sorry that was pretty painful,' am I too overprotective?  If I allowed her to tell me she cried so many times in one day and all I respond with is "that sounds rough. What movie do you want to watch?" am I hurting her emotionally or going too far for the parameters of the program?  It is strange, especially when you are naturally not the coddling type, to suddenly question any normal response to any given situation as one where you are handicapping your child.   It makes it hard to feel like I can just be the mother, that at age 15, she still needs. To love, to hug without worry. The first night I visited her, we watched a movie together. The last 10 minutes, I invited her for a little cuddle on the couch with me. We did not do anything that we would not do normally and we didn't cuddle for long, but even that small act as her mother had me asking my husband if I had done something against the program.  

I understand parents who if their child says their arm hurts would clean their room, fetch their water, and generally just wait on their child hand and fist or would not have them do their exercises because it hurt.  I am not that person.  I will do the wall squats along with you, even compete to outdo you if that inspires you. I am not a big hugger but if you were crying, I would give you a hug and listen to you explain why. Depending on the issue, I would most likely hand you a box of tissue, give you my 'did you consider the other side' spiel, and tell you go take care of the problem.   I am a very independent person who is not a big toucher and so I expect much the same from my kids. But some of them are more like their father.  A hug can give them strength to succeed.  A validating statement helps them feel heard and understood, even if they know they need to do better.  A cuddle on the couch is what they do with all their friends and so it is not considered some kind of preferential treatment.    What is normal is no longer clear cut and I hate feeling like I am unsure how to just love her without hindering the program's objectives and without our relationship becoming emotionally estranged.

Zoralei's take on what she does

Today was the longest visit I have had with Zoralei.  I got a solid six hours of time with her.  I arrived as she was finishing her second at home workout.  I did a few of them with her.  It consisted of exercises like one arm planks for a minute each, pushups, situps, lunges, regular plank, running around the hall (quickly adjusted to walking when the nurse said that was dangerous), wall squats, jumping jacks, and jumping squats.  I think there was a couple of more, but that is the basic idea of the exercises. She does them 90 reps each time.  It was tough. During the one arm plank, she collapsed a couple of times, immediately paused her timer, got back up and started the timer again.  I was impressed with her determination and her integrity to make sure her 'homework' got done.  She was to do this workout once Saturday afternoon even though she did nearly a full day of the usual workouts and twice today (Sunday).  There are some stretches they have her do as well. She says yoga is one of the things she is learning as well.  If you are familiar with Shaun T's insanity type workout, many of the exercises she describes are similar to what you do in that program as well as a variety of animal walks.  This girl will be so buff when she is done this program!!

I asked her about whether they were encouraging her to write. She said they had not asked her to write.  It was something she did to ease the loneliness of being in her room, because the characters help her to feel like someone is with her.  Since it was Sunday, several of the other teen hospital patients on her floor had the weekend at home and she was very much looking forward to reuniting with them as there wasn't a lot of people to keep her company all day Sunday and we were only allowed a six hour visit.  She took advantage of face time and skype to talk with a friend and her older sister, but even at that, she had a lot of time left to pass.

I asked her a bit more about the program.  How was counseling going? She said all they have talked about was some unusual fears that she has, how she typically responds to stress, and her background. She says in counseling they have not talked about how she feels about the program or the response of the staff to her crying or anything pertaining to her current experience.  Perhaps that will change, but she goes days between sessions and sometimes it is just a few minutes when the counselor talks with her.  For such an intense program, I am actually surprised there is not more emphasis on counseling. I would think that might be an important coping skill and outlet for her to deal with the rigors of the program.  It sounds like it is another outlet for ultimately providing suggestions for dealing with stress, which several different specialists described as part of their job description.

For the most part, the staff has been nice to Zoralei. There is only one staff member who seems to not want to be around during any of the exercises and Zoralei even joked to the staffer that maybe she (Zoralei) was the reason the staffer kept leaving. We reason that having to be so emotionally detached to a person's suffering must very difficult for the staff members too.  It is not the usual human response to ignore someone's tears.

Zoralei said that she doesn't mind the pain as she knows that it will help. What bothers her is the lack of individual consideration for the patients.  It is a very regimented program with no give at all and sometimes individuals need something different to thrive.  She, being extroverted, has managed to make friends at the hospital, but there is always that underlying concern that the staff, having made it clear that they do not want outsiders visiting and are weary of relationships made within the hospital, may decide to take the privilege of hanging with those friends away if they hinder her progress. So she works as hard as she can to show them it does not prevent her from succeeding in any way.

One nurse had signed Zoralei's paper that Zoralei did the exercises as directed and she told her that she keeps seeing how hard Zoralei is working.  Zoralei and I both thought it was nice to have the kind words. My daughter told me her therapists do not respond to any indication of pain or discomfort, but some of them will tell her when the exercise or session is over that she did well or worked hard.  She overheard one conversation between staffers where they were talking about how well she was doing. I was grateful there are some kind words, even though they exhibit very little compassion for her pain.

Zoralei , myself, and a nurse were just making small talk and feeling yukky premenstrually.  The nurse said it was ok to have a bad day now and then, in reference to a woman's monthly. Zoralei looked at the nurse and said, "I am not allowed to have a bad day here."  The conversation ended quickly after that as the nurses are restricted in what they can talk about.  Still, many people have complimented Zoralei how she often seems to have a smile on her face and tries to be cheerful, so she isn't succumbing to having a bad day in this program, but I bet sometimes it would be nice to feel like she could just feel whatever she was feeling.  She is doing so well holding it together.

At about 5 pm, Zoralei sighed and said that this was the time of day when she started dreading bedtime (which is 4 hours away), because it meant she has to start the program over again. Tomorrow is two and half straight hours of physical therapy before she gets any type of break and she knew that was going to be 'tough.' They put the schedule up the night before so you have time to worry about it and cope with the anxiety over it or so I assume that is the purpose.

She described how the last time she kept getting the same time as before on an exercise and ended up having to do it 8 times before she beat the previous score and was able to move on to another exercise for the day. She will get the exercise again the next day and have to beat her new time, but at least she could stop redoing it over and over for that day.  She rarely talks about how painful it is.  Her sole comment in regard to pain levels was that sometimes she prays that the Lord will make it so she faints and because then she would not have to do it again when she did not beat her time.

Mind, Body, AND Soul

My husband and I take turns visiting my daughter, except for twice a week when we bring all the kids.  There isn't much to do in a hospital room for 4 hours, so we limit the younger children's time there.

Zoralei is not allowed to sit on her bed at all except for night-time sleep. So she is sprawled on the floor or sitting in a chair or on the couch every time we come over.  The place is beginning to look like her room at home with her stuff spread all over the place.  They don't seem to mind that it looks so unkept, but I know it is hard on her not to just be able to relax after a grueling workout and it can be difficult to get comfortable in the other seating arrangements given.  It has something to do with her not hiding under her covers in a fetal position.  I guess other kids did that.  I tend to rest after a long workout at the gym and if I hurt, I lay down so we are training her to ignore the normal compulsion to do so.  Given my husband is sick, the bed provides a nice place for him since it is not in use.

Zoralei said she had a self-directed workout today. They tell her what to do and then watch from the sidelines to see if she is willing to work hard enough on her own.  They also gave her exercises to do on Saturday and Sunday (once on Saturday and twice on Sunday) that are not much different from her workouts with the staff members.  That did take up an hour of our possible visiting time, so we went from 4 1/2 to 3 hours today to visit.

Overall, my husband reported she was tired, worried about a more grueling workout next week, but for the most part, he felt she was handling it well.

The friend she met the other day was going home on a weekend pass and so they had lunch together and now Zoralei will not see her for nearly 48 hours.  We will visit for six hours tomorrow, but she will have a lot of alone time.  It will be interesting to see how she fares. She sent home an order for chocolate:)

She has a lot of time to pass, so she has been writing more.  Zoralei has an amazing gift with words and with so much time on her hands, they encourage her to find something productive to fill it.  I appreciate that she has chosen to write and not to just browse the internet, play video games, or watch tv, all which they provided in her room.  She lost some motivation to write last year when she missed three months of school from the pain of endometriosis and appendicitis, so I love that she is taking time to do so.  Much of what she writes, whether it is her medical autobiography, the romance novel based on her friend, or her blog that has a lot of spiritual insights is healing for her spiritually too.  It is also an emotional outlet as well as a way to help her stay connected to her friends.  The program stresses coping techniques, but I have not seen much encouragement from the staff during the visiting hours to make sure Zoralei is doing something productive with her time and so I am grateful that my daughter is investing in coping strategies to distract herself from the pain.  I know popping a movie in is a lot less work.  Perhaps this will be one of the benefits of the program.  I think tomorrow I will ask more about what they teach regarding coping strategies and what made her write again.

It is important to know that from the hours of 5 to 9 pm, the nursing staff shows up to express a change of shift and to offer a drink and then we do not see anyone until 9 pm, when they ask if she has bathed, tell her they are getting her the sleeping pill, and basically tell her its bedtime.  It is not a typical hospital stay where the staff is very attentive. The reality is they do not come around much at all and it is one of the first things they tell you too.

One thing I have absolutely loved about the teens on her floor, they got together and did a bible study for a boy with short term memory issues from an accident, taking turns praying for him, for all of them. They are relying as much on God as they are themselves to get through.  I met several teenagers who all found their strength in the Lord during this time.  Even though they are all there for different reasons, they seem to have a fundamental understanding that the trauma each of them experienced is overwhelming to overcome without a spiritual connectedness.  Those that seem to exhibit the most positive attitude are those who outwardly express their faith and believe in the Savior and attribute his strength to get them through their healing processes.  The program focuses on the mind and body, but the teenagers understand the other part that needs healing is the soul.

Last questions

Our life is a bit more complicated than our daughter's RND. Next week, my husband and I have to go to San Francisco to meet with a liver transplant specialist since my husband has cirrhosis, unknown origin.  We have been dealing with back to back appointments for him since May when he went into respiratory failure over a gallbladder surgery and overreactive liver.  We asked the RND program to allow an adult visitor to replace us for the two nights we would be gone.  If that did not work, we asked if our 10 years old son can be dropped off to play games with his sister.  There is obvious hesitancy to allow any social interactions, even in our absence.  We were told no, then they would consider it and a week later, they are still unsure. However, some of the staff have been remarking to our daughter that they heard a friend was going to visit in our absence. She is looking forward to it, yet when we question it, we are told it does not look good.  It has been frustrating. The communication is a real problem.

Each week we get a 15 minute meeting. The first time, we were supposed to have 25 minutes, but there was a scheduling error, so we only got 15 minutes and most of the 8 staff members that were there left before our time was up. How does a parent, unfamiliar with the program, get any sense of what is expected?  How to handle situations? Understand why they are doing what they are doing?  All in 15 minutes?  Sure they ask if we have questions, then they hustle out the door. They do not provide any program for the parents to help cope with the fact that they are essentially isolating their child and providing no compassion or empathy during their suffering.  They do not provide time to ask questions and the one question I asked, "How do you help them to not become desensitized to all kinds of pain? Will they still come and tell us when something is wrong, so they don't ignore some issue until it is stage 4 cancer?"  (If you knew all that Zoralei has undergone the two years before with an ovarian cyst as well as appendicitis and severe endometriosis (the last two at the same time), this would not seem like a real stretch in our family.)  There was some general response about how RND is obviously different and the child should be able to tell. Such a vague response did not exactly put my concerns to rest. Are they talking about the differences?  How do they teach her to recognize the difference?  How do they teach her what an appropriate pain response is, when they do not acknowledge any of her pain responses?  Yet, in 15 minutes, I cannot really ask them to delve into this and having only seen the specialist once because he did not need a followup, I feel like we are left to draw our own conclusions. The internet is only so helpful.

My biggest concern right now is simply  how to undue any possible damage to her ability to depend on others and trust them without undoing the program's positive effects.  There, of course, is not any discussion of this within the program.  I really feel unable to ask questions because if I ask too many, I am treated as if I am a real coddler (this is laughable because with six kids still at home, I do not have time to coddle!  My lack of nurturing and coddling has been an issue for both my older teenage girls. I homeschool as well, so I expect a high level of independence from my kids.)  They mentioned working on coordination and I joked our family was klutzy and was immediately told that is a self-debilitating comment.  As long as our klutziness is not used to inhibit what we need or want to do, why can't it be acknowledged or joked about?  Anyhow, I am just not sure if I question too much that I will come across as genuinely curious and intellectually concerned or just a parent who can't handle the program.  The latter is not true nor is it an impression that will help Zoralei's care as some of my insights as her parent could be very helpful in guiding her, but if they label me as overprotective and coddling, they will not take those suggestions seriously.

Another thing we were told is that she is to absolutely have no medication of any kind, except perhaps pamprin for her menstrual cycle.  She could not sleep the first night and is now being given a sleeping pill every night.  I would rather her get a good night sleep than not with such a physically demanding workout, but I find the program inconsistent in ways that are difficult for me.

Again and foremost, I have truly been troubled by the lack of emotionally empathy displayed to her when she is crying.  I understand ignoring groaning and moaning or dramatic over exaggerations that plague teenagers, but I do not understand the pain being so intense a child is sobbing and there is absolutely no compassion shown.  Love, expressed as simple words of encouragemetn, is widely accepted as a healing balm in most situations.  If the child succeeded at home in curing their RND with a long enough program of outpatient program, then they would have had their parents and friends supporting them the entire time, acknowledging the pain and yet asking them to push past it.  This was not detrimental to those children or every one of them would end up in the RND inpatient program.  So why in the inpatient program is it suddenly so essential to express no compassion whatsoever?  Most kids who did not succeed outside the inpatient program probably did not succeed because they were not motivated to put themselves in that kind of pain for 2 to 5 hours a day, because their time available to invest in workouts was too limited to do the good needed, or simply because the at home pace is slower to heal on their own.  A child needing the inpatient program is not necessarily coddled at home- that would be a stereotypical assumption that should have no place in good science.  I feel like something valuable is missing, something crucial to preventing long term negative emotional and relationship damage resulting from the treatment process.  If nothing else, as a mother, it upsets me to put my child where she is not getting the kind of care I would want any child to receive. This, as I mentioned in a previous post has been the most difficult part for me.  Second to it would be the communications errors and lack of information.

I want to focus more on what the program treatment is for Zoralei now that I have talked about my concerns and fears and lack of understanding.

The Beginning of the Inpatient Program

After my six year old son jumped on his 14 year old sister's arm, a painful journey began for my daughter.  Extensive casting and misdiagnosis of a possible fracture, we eventually sought a second opinion and learned that she has RND or Reflex Neurovascular Distrophy, where the spine misfires, causing lactic acid build up and incredible pain.

A couple of months later, daily occupational and physical therapy outpatient visits and counseling, we are now admitted to the program at the Portland Randall's Children's Hospital.  I am writing this blog because there is so little out there to help parents and even children to understand what happens during all this and this can lead to serious bewilderment and concern about what your child is undergoing.  Everything I read says, "It's intense, but worth it." What does intense mean? What gammit of emotions or experiences will we undergo?  I will choose to undergo a program meant to help my child, but after only six days in the program, I felt distinctly underprepared for what we would have to experience and could have been better prepared.

We mostly dealt with a nurse coordinator before my daughter entered the program, meeting only once with the specialist doctor to be evaluated as a good fit for the inpatient program.  Zoralei, my daughter with RND, was told she would spend at least three months waiting for a slot to open. Luckily, it only took two months and after three weeks for insurance approval, we were ready to begin.

We were given a general description of what to expect, six hours of leave on Saturday and Sunday (where she can come home during those hours) beginning the first weekend, visiting hours from 5 to 9 pm for immediate family members ONLY, no outside packages or deliveries or visits from anyone else, cannot discuss pain levels with her at all or help her do anything, and she cannot use her cell or computer at all during the day, she can use the phone and computer after 5 until bedtime and she can have a brief 15 minute call each morning to her parents (and only her parents).  She is expected to bathe daily and to eat.  No one on staff will ask her about her pain levels either.

We were told to check her in at 8 am Monday morning, which we did and learned that Zoralei actually did not begin her program until 11 am and that she really wasn't needed there so early, but for some reason the coordinator tells that time. Needless to say, she had three hours of sitting around and wondering what it was all about.  I found that interesting considering that anxiety and stress can aggravate the condition.  Doesn't three hours of sitting in a room, wondering what to expect create anxiety and stress? But one thing you learn in this program is that they provide a lot of alone time to worry and think about their circumstances, somehow equating alone time as a good coping mechanism for someone who experiences a great deal of stress.  Honestly, I do not understand how that works to the child's advantage, especially as I know my daughter is an extrovert and one of the coping mechanism that we have taught her is to not focus on her pain by doing something else or getting out there with friends.  But the approach here is to limit those relationships as not beneficial.  I do not fully understand and am anxious to see how the program progresses and how this will help her.

Having received my bachelor's degree in psychology, I am very anxious to see the psychological implications of how the program plays out and the long term effects on her relationship with her future husband and family members.  This concern came after the first couple of days had progressed and I saw how the program worked.  During those days, I learned (from another parent with a child who is working in the same area as Zoralei) that there is a lot of crying from Zoralei and absolutely no response given to the tears or any verbal indication of pain. Not one word of encouragement or even one verbal acknowledgement that 'it is hard, but we know you can do it.'  To the point that Zoralei cried 11 times in one day and no one acknowledged it, simply left her to improve her score (repetitions of an exercise or performance time) from the day before.  One day she was crying so hard during the desensitization activity with a towel, that after an extended period of time, the staff simply closed the curtain without a word, leaving her alone to deal with the pain.

Honestly, I said nothing as I am not allowed to respond as if I care about my daughter's suffering and yet as soon as I was in the car, I cried my eyes out.  Obviously, there are other children using the facility, whose parents can be there to help them through their therapies.  My child, however, has to endure every step alone in an attempt to help her become independent and to not have anyone coddling her ( in one research paper, the doctor who established this program drew some conclusion that since most patients with RND are overachievers and parent pleasers , their pain helped them get attention from their parents as a small child would. Rather than simply concluding type A personalities, which are known to be prone to greater levels of stress, aggravate the condition, they immediately sought to assume some issue with the parent/child relationship.  My biggest frustration with this is not defensive in nature, instead I just recognize that part of their program involving relationships in the life of the child patient is in part designed around this conclusion that seems to be simply an opinionated interpretation of data results and conclusively proven.   A does not always mean B.  My concern is that an actual biologically based problem is now treated as if it is all in the patient's psyche, almost making it seem as if those relationships are the problem in the child's life and now the child should be somehow punished for having those relationships in her life by removing or limiting their love and support. Furthermore, the child is suffering, but that is deliberately ignored, thus creating the image that her pain ultimately does not matter and what will that mean later on in her adult relationships? Will she struggle to trust that someone will respond to any pain in her life (whether physical or emotional) or will she assume she cannot depend on anyone and must immediately solve all things on her own, creating a wall in her relationships with people?  How will this affect her relationship with us as her parents when she gets out?  Hopefully, she will be more independent and pain free or nearly so, but will she still trust us to be there for her or will she have felt abandoned during this process and the emotional wall will begin with us?

Of course, as a parent, you want to help your child and I am helpless. Sitting on the sidelines, praying for her, doing my best to visit during visiting hours while still trying to parent five others and hoping beyond hope for the best result.  Trying beyond trying to not be bothered that the dream I had that I would be there through my child's hard times is an impossibility for her during this program.

All these thoughts are going through my mind during the first few days of the program and more.  I do not share them to turn people away from the program, but to present a realistic aspect to this.  I am committed to see it play out, but it does not mean that every aspect of it I understand or agree with or provides me confidence.  I am hoping for the results that say it is worth it, but it is as much of an emotionally roller coaster ride for the parent as the child.  I see how exhausted she is by the end of the day.  I hear her tell me she cannot sleep and can we walk the hall one more time so she can avoid going to her room and hence avoid going to sleep, because going to sleep means she will have to wake up the next day and start over again (the last thing she wants to do)? And every time she says this, I steer her to her room, make small talk for 10 minutes, and head out the door as if I am an emotional post with no feelings at all. It is so not easy. It is down right heartbreaking!!

One thing  that has been hard is the miscommunication or lack of communication in the program.  We were told we could visit our daughter for six hours on Saturday, after her therapy, but the scheduled her therapy to allow us 4 hours of visiting.  It is really frustrating to feel like they tell us something, we plan for it and then find we cannot have even that little bit of time with her.  Next week, we are supposed to have leave where she can come home for a time or go somewhere with us and I am hesitant to believe that they will keep their word, despite the form with the rules that says that is what we get.

The happiest part of my week was learning she made a friend there who has a disorder that prevents feeling and they were able to eat lunch together.  The program made it clear that they would only allow certain relationships among the patients, only ones where they are very independent individuals. Though this friend only has a week left in the hospital, her presence has been a bright spot in Zoralei's treatment and has my daughter saying that despite not really wanting to be there, it has been worth it to meet the people she has met and that she is seeking to focus on the blessings of being there rather than how miserable she feels.  I understand other children have not been able to identify those blessings and so I am grateful that my daughter, who is such an extrovert, was able to find a way to experience the support she needs to cope.