I have not written in a long time. Not because the RND went away or anything miraculous like that, but simply because other families needs arise and prove to be their own distraction. My husband became very sick and after three years, he was able to get a liver transplant. He had NASH, non-alcoholic liver killing disease. In the midst of dealing with his declining health, we continued to pursue doctors for Zoralei's needs. She had 5 surgeries in the last five years for endometriosis and continues to exercise and destress to treat her RND.
The endometriosis has proven to be its own heartache, in part because I have always remained unsure of how much the RND plays into it. Surgeries that normally would have stripped the pain entirely for others, still leave Zoralei with pain. The pain is not as intense, but it is never gone. The last surgery she lost an ovary, which had the endometriosis and yet still she struggles. The reality is her pain receptors react so quickly.
She still avoids tight sleeves because her arm hurts so much, but otherwise, she has chosen to live her life to the fullest. She has been able to do everything any normal teen can (except right after her surgery recoveries). As pain receptors have lessened their intensity, her compassion has increased, so much so that when she leaves for college in the fall, she will be pursuing a degree as a physical therapist. I think it is incredible that one of the hardest experiences of her life, the hospitalization for RND has actually become one of the greatest blessings of her life. Not only did it help her to learn to control her RND, but it also directed her future. I never would have seen that. She was so determined not to walk a mile to school, to avoid bike riding, or any kind of exercise prior to this experience years ago and now she will use those tools to help other people. It is incredible to see the woman that she has become in all of this.
I know Zoralei is aware of her RND, but though it has shaped who she is becoming, it has not defined who she is. I honestly believe that is the secret to success with this. When Zoralei stopped defining her life in terms of the pain she was experiencing from endometriosis and subsequently, the RND, she started to find herself. Thriving was not possible until she could see herself beyond the pain. She had to figure out if she was RND or if she was something more? She had to learn to see something greater in herself.
As she begins her next chapter of her life and we adjust to life without her, as a parent, I cannot help but worry: what if there is a flare-up (we will be several states away)? What do I need to do to make sure she has the tools she needs? What doctors do we need to set up down there? What if her roommates are not compassionate when it is a particularly rough day? These are just a few of the questions that flit through my mind. Then there are the feelings of relief that I come along with the questions. Relief that she is doing so much better, relief that she can go to college as I was very worried she would not be able to do so. Even relief that life might be a bit simpler without dealing with so many medical issues all the time (and along with this comes some guilt for feeling that way). RND is an emotional roller coaster ride for a parent, no matter what phase your child is approaching, but one thing is certain is that Zoralei will succeed.
Zoralei has mastered it. She hit rock bottom and for a while there, the pain was so bad that I really believed she might not come out of her depression ever. We didn't give up. We found a program that could help her. We asked questions. We moved forward. It is so important to never stop moving forward. As the parents, we have to help them move forward when the pain is crippling. As long as we move forward, they can define themselves beyond their RND. They can become all that we dreamed for them. They can become a light of triumph to all those around them.
Thursday, July 13, 2017
Friday, April 24, 2015
What if the RND leaves residue concussion symptoms?
Zoralei is still suffering the effects of the concussion. The misdiagnosis and subsequent mistreatment really delayed the healing. It will be a month tomorrow of sharp headaches, sensitivity to sound and light, nausea, and dizziness. She is so OVER being sick and in pain all the time. It has really begun to affect her moods. She is starting to want to withdraw a bit, avoid hanging with people. Understandably, some of that is because her head hurts and too much of a crowd or tv stimulus hurts her worse, but some of it a sense of discouragement. To always be in pain is discouraging.
Zoralei has been asking a series of questions related to this, similar to: "Mom, what if I will always have the effects of this concussion? My RND makes me more sensitive to pain and what if it does not let me fully recover from the headaches and pain sensitivity? What if I find that those nerves affected by the concussion remain super sensitive? What if it never goes away? If the doctors say that I cannot play lacrosse if I have any symptoms, will I ever be able to play again?"
I really hope not was all I could reply. I know the doctors at the hospital said we could tell the difference between RND induced pain and non-RND pain, but the line is a fuzzy gray and one jump on her arm by her brother resulted in permanent pain, resulted in her RND. What if one ball hit to her helmeted head makes a new area of her body subject to the RND? It is the same question I am asking myself. I understand why she is starting to feel discouraged, to feel like a walking time bomb of pain. Is there anything else to experience besides pain for my daughter? As a mother, watching her suffer and every thing that might be minor to someone else ends up larger than life for her, is heartbreaking, and tiring too. I just want her to know what it means to be able to enjoy just being.
Zoralei has been asking a series of questions related to this, similar to: "Mom, what if I will always have the effects of this concussion? My RND makes me more sensitive to pain and what if it does not let me fully recover from the headaches and pain sensitivity? What if I find that those nerves affected by the concussion remain super sensitive? What if it never goes away? If the doctors say that I cannot play lacrosse if I have any symptoms, will I ever be able to play again?"
I really hope not was all I could reply. I know the doctors at the hospital said we could tell the difference between RND induced pain and non-RND pain, but the line is a fuzzy gray and one jump on her arm by her brother resulted in permanent pain, resulted in her RND. What if one ball hit to her helmeted head makes a new area of her body subject to the RND? It is the same question I am asking myself. I understand why she is starting to feel discouraged, to feel like a walking time bomb of pain. Is there anything else to experience besides pain for my daughter? As a mother, watching her suffer and every thing that might be minor to someone else ends up larger than life for her, is heartbreaking, and tiring too. I just want her to know what it means to be able to enjoy just being.
Friday, April 17, 2015
How do you trust your body with RND?
The RND has been making it hard to evaluate conditions with Zoralei.
We saw the doctor regarding her endometriosis and prior to going in, Zoralei agonized over trying to be certain the pain is truly endometriosis and not exaggerated by the RND. We decided that since the pain is localized (and not in her arm where the RND was first identified), that it was a sudden onslaught, it has not improved with 2 hours a day lacrosse practices, and felt different than her RND pain, that it was safe to assume that it was really the endometriosis and not mostly RND, with a little endometriosis. The doctors had told us in the hospital that we would be able to discern, but honestly, that has not been quite so clear cut as they had said. The worst part is not even trying to decide if the pain is legitimately worth looking into or a mere reflection/exaggeration of her RND, no the worst part is the self-doubt it has created in her. She doubts her own ability to determine what is going on in her own body, is afraid to simply be a drama queen. It is like she cannot trust her body anymore to steer her true.
Zoralei's lacrosse practices have not improved her RND tremendously, but she says though the improvement has been minimum, she was trained in the hospital to push past the pain. Thus, she feels better when she exercises because she is occupied, busy, and pushing herself physically and mentally to ignore the pain. It is like the exercise has become a trigger to tell her she has to ignore it. It is a good trigger; though in a busy life, not always possible to achieve. She was very nervous about finding the balance in life with lacrosse, now she worries how she will continue to find the exercise motivation without the structure of a team sport.
Another issue that has arisen with the RND is the concussion that she received from playing Lacrosse. She was being the goalie and was hit on the head. Unfortunately, the helmet was not adequate. Ironic that they insist on it. . . In any case, we knew she got hit in the head, but she was able to keep playing and so no one thought anything of the symptoms. One of the main symptoms was fatigue, but the increase in pain that she is experiencing and the more grueling schedule had already left her tired all the time and so we did not realize we needed to pay particular attention to this symptom. A teenager saying she is tired is really not all that unusual as half the time, it is code word for I am bored:) We took her in due to ear pain, sensitivity to noise, some dizziness, some nausea, headache/sensitivity to light (which really just showed up as making her headache worse), and fatigue. The doctor said she had a little irritation in her ear and it must be swimmer's ear and treated her with drops. After 4 days, the drops were obviously not improving anything, we took her in again and they saw nothing wrong with her ears, but suspected maybe a sinus infection. She took the antibiotics for 2 days with no relief of any symptoms and suddenly, Zoralei was inspired and remembered that she was hit in the head. "Maybe I have a concussion," she told me. We took her into the ER and she was right. They said she could return to school, but after homework all weekend and some additional stimuli, her symptom were continuing to worsen after two weeks. Now she was a bit of a ditz, forgetting things mid conversation. So we went into the ER again and they confirmed concussion again but said absolutely no stimuli at all for 72 hours. Her pediatrician confirmed the emergency room's diagnosis. So 2 1/2 weeks later, she is still suffering concussion symptoms and again, she keeps wondering if her body is exaggerating things. her RND should be better after nearly 2 months of lacrosse, but she does not feel a lot better and again, is self-doubting herself. Now that the seed of doubt is planted, it resurfaces everywhere. Zoralei is not supposed to let pain stop her but she has had a week out of school now as we try to limit her to no stimulus and help improve her concussion. It has improved somewhat, but still the symptoms are still there. Zoralei keeps saying she needs to treat it like RND and ignore it, but the effectiveness of that was proven for she was doing all the normal things for a week and a half after the head injury and they symptoms only worsened.
However, resting and cutting out all stimuli literally means spending way to much time alone in one's head to think about things, to question whether it will never really heal because of the RND. After all, her brother landed on her arm to jump over her and she has not been the same since and it has been 9 months. I can appreciate the hesitation. What is logical doesn't seem to act by the logical rules it was supposed to be bound too.
With Eric having been hospitalized again this week, we really juggled to avoid Zoralei babysitting, but one day that did not work out as smoothly as the other days. Zoralei spent most of the day babysitting and trying not to be overstimulied by five younger siblings. In any case, she did okay and had a strong headache afterwards, but most of the other symptoms were a bit better that day overall. In talking with her though, it was difficult because as I was talking to her about how she felt after that day, there were some symptoms that she described that could have been an RND issue and some that were distinctly concussion. It was hard to be objective. I feel badly for my daughter as it seems to be pain is the one characteristic and understanding it is convoluted and finicky.
We saw the doctor regarding her endometriosis and prior to going in, Zoralei agonized over trying to be certain the pain is truly endometriosis and not exaggerated by the RND. We decided that since the pain is localized (and not in her arm where the RND was first identified), that it was a sudden onslaught, it has not improved with 2 hours a day lacrosse practices, and felt different than her RND pain, that it was safe to assume that it was really the endometriosis and not mostly RND, with a little endometriosis. The doctors had told us in the hospital that we would be able to discern, but honestly, that has not been quite so clear cut as they had said. The worst part is not even trying to decide if the pain is legitimately worth looking into or a mere reflection/exaggeration of her RND, no the worst part is the self-doubt it has created in her. She doubts her own ability to determine what is going on in her own body, is afraid to simply be a drama queen. It is like she cannot trust her body anymore to steer her true.
Zoralei's lacrosse practices have not improved her RND tremendously, but she says though the improvement has been minimum, she was trained in the hospital to push past the pain. Thus, she feels better when she exercises because she is occupied, busy, and pushing herself physically and mentally to ignore the pain. It is like the exercise has become a trigger to tell her she has to ignore it. It is a good trigger; though in a busy life, not always possible to achieve. She was very nervous about finding the balance in life with lacrosse, now she worries how she will continue to find the exercise motivation without the structure of a team sport.
Another issue that has arisen with the RND is the concussion that she received from playing Lacrosse. She was being the goalie and was hit on the head. Unfortunately, the helmet was not adequate. Ironic that they insist on it. . . In any case, we knew she got hit in the head, but she was able to keep playing and so no one thought anything of the symptoms. One of the main symptoms was fatigue, but the increase in pain that she is experiencing and the more grueling schedule had already left her tired all the time and so we did not realize we needed to pay particular attention to this symptom. A teenager saying she is tired is really not all that unusual as half the time, it is code word for I am bored:) We took her in due to ear pain, sensitivity to noise, some dizziness, some nausea, headache/sensitivity to light (which really just showed up as making her headache worse), and fatigue. The doctor said she had a little irritation in her ear and it must be swimmer's ear and treated her with drops. After 4 days, the drops were obviously not improving anything, we took her in again and they saw nothing wrong with her ears, but suspected maybe a sinus infection. She took the antibiotics for 2 days with no relief of any symptoms and suddenly, Zoralei was inspired and remembered that she was hit in the head. "Maybe I have a concussion," she told me. We took her into the ER and she was right. They said she could return to school, but after homework all weekend and some additional stimuli, her symptom were continuing to worsen after two weeks. Now she was a bit of a ditz, forgetting things mid conversation. So we went into the ER again and they confirmed concussion again but said absolutely no stimuli at all for 72 hours. Her pediatrician confirmed the emergency room's diagnosis. So 2 1/2 weeks later, she is still suffering concussion symptoms and again, she keeps wondering if her body is exaggerating things. her RND should be better after nearly 2 months of lacrosse, but she does not feel a lot better and again, is self-doubting herself. Now that the seed of doubt is planted, it resurfaces everywhere. Zoralei is not supposed to let pain stop her but she has had a week out of school now as we try to limit her to no stimulus and help improve her concussion. It has improved somewhat, but still the symptoms are still there. Zoralei keeps saying she needs to treat it like RND and ignore it, but the effectiveness of that was proven for she was doing all the normal things for a week and a half after the head injury and they symptoms only worsened.
However, resting and cutting out all stimuli literally means spending way to much time alone in one's head to think about things, to question whether it will never really heal because of the RND. After all, her brother landed on her arm to jump over her and she has not been the same since and it has been 9 months. I can appreciate the hesitation. What is logical doesn't seem to act by the logical rules it was supposed to be bound too.
With Eric having been hospitalized again this week, we really juggled to avoid Zoralei babysitting, but one day that did not work out as smoothly as the other days. Zoralei spent most of the day babysitting and trying not to be overstimulied by five younger siblings. In any case, she did okay and had a strong headache afterwards, but most of the other symptoms were a bit better that day overall. In talking with her though, it was difficult because as I was talking to her about how she felt after that day, there were some symptoms that she described that could have been an RND issue and some that were distinctly concussion. It was hard to be objective. I feel badly for my daughter as it seems to be pain is the one characteristic and understanding it is convoluted and finicky.
Tuesday, March 3, 2015
New responsibilities
My husband ended up in the hospital all last week. He had hepatitis encephalopathy (impaired brain functioning due to toxin buildup, aka "confusion"). It was a more than a little frightening. My husband is not a particularly physical man, but he is very intellectual and seeing his inability to communicate or even to stay awake to communicate was feeling like we are losing him though he is right next to us.
Zoralei ended up doing a lot of childcare, staying with kids when not in school. And all this was going on while she was beginning long lacrosse practices. She has done a lot of running, so much so that her legs are a mass of knots. She says they hurt. In one practice, she was hit with the ball fairly hard and they kept asking her if she was hurting. Zoralei's reported response was, "Yes, but I have RND, so do not fuss over me. Anything that hits me with that kind of force is going to hurt more than it might someone else, so you can not decide if I am okay by whether I have pain or not." Of course, they still fussed until she just went back to running.
Zoralei is now the official chauffeur for her father. An unfortunate side effect of the hospitalization is the realization that the toxins will build up again, slowly. He will not realize he is experiencing confusion and so he has been directed to no longer drive (at least not till he gets a new liver). It has been a severe blow to Eric's sense of independence, ego for lack of a better word. Zoralei, who has her permit is now running the errands in the evening that Eric would have done. He is the supervising driver, but he does not have to be the one behind the wheel. Poor Zoralei, the load keeps growing and so does the stress. I try to minimize it by running as many errands as possible, but with Eric being in pain and feeling sick a lot, sometimes the driving errands are easier on him than juggling dinner, cleanup, five small kids needs, etc.
I started my master's in teaching program yesterday and today is my surgery for a breast lump removal. It really has been a long couple of weeks. In between, we had several emergency room runs with small kids and illnesses. Truly, a long couple of weeks. Yesterday, we made cookies for Zoralei's friend having a rough day and it was absolutely therapeutic for Zoralei and I to eat the dough.
I am trying to find a good balance with schooling, homeschooling, meeting my kids needs, countless doctor appts, and picking up the slack when my husband is too sick - and trying not to lay the burden on my other children. I am trying to make the only additional burden on Zoralei to be helping her dad by being his chauffeur. The other children have helped a bit more with chores, animals, and looking out for each other. If we can all take a piece of the burden, I am hoping it will not be too heavy to bear for anyone in particular. I am anxious to make sure Zoralei's load is not so great that she is prevented from being a normal teenager - pursuing schooling, friends, dating in six months, movie/relax time, homework, and flirting (wink). She had a friend coming over after school and saw one latter in the evening too. I know she was making plans for at the end of the week too. If we do not keep a good balance then her RND might not remain stable at 5/6, but go up to prior to the hospitalization and I am anxious to avoid that. We have enough to juggle without beginning that battle again.
My other children have been struggling. Ironically, it is Zoralei who seems this time to handle it best. Usually, she is the more emotional one in it all, but she hasn't been. I think she is just too busy to be emotional. The other kids did fantastic while we were in the hospital, but since getting back, they have been close to tears over some pretty trivial things and very huggy. Lots of loving being shared. It has not been easy for any of them, but they are all rising to the occasion. They really look out for each other. I am really proud of them in that way. It is not a burden that falls only on the oldest. Even our 3 year old, Renaria, feels the impact and gets a little less cuddle time and keeps making comments asking if her dad 'is feeling better?'
Zoralei ended up doing a lot of childcare, staying with kids when not in school. And all this was going on while she was beginning long lacrosse practices. She has done a lot of running, so much so that her legs are a mass of knots. She says they hurt. In one practice, she was hit with the ball fairly hard and they kept asking her if she was hurting. Zoralei's reported response was, "Yes, but I have RND, so do not fuss over me. Anything that hits me with that kind of force is going to hurt more than it might someone else, so you can not decide if I am okay by whether I have pain or not." Of course, they still fussed until she just went back to running.
Zoralei is now the official chauffeur for her father. An unfortunate side effect of the hospitalization is the realization that the toxins will build up again, slowly. He will not realize he is experiencing confusion and so he has been directed to no longer drive (at least not till he gets a new liver). It has been a severe blow to Eric's sense of independence, ego for lack of a better word. Zoralei, who has her permit is now running the errands in the evening that Eric would have done. He is the supervising driver, but he does not have to be the one behind the wheel. Poor Zoralei, the load keeps growing and so does the stress. I try to minimize it by running as many errands as possible, but with Eric being in pain and feeling sick a lot, sometimes the driving errands are easier on him than juggling dinner, cleanup, five small kids needs, etc.
I started my master's in teaching program yesterday and today is my surgery for a breast lump removal. It really has been a long couple of weeks. In between, we had several emergency room runs with small kids and illnesses. Truly, a long couple of weeks. Yesterday, we made cookies for Zoralei's friend having a rough day and it was absolutely therapeutic for Zoralei and I to eat the dough.
I am trying to find a good balance with schooling, homeschooling, meeting my kids needs, countless doctor appts, and picking up the slack when my husband is too sick - and trying not to lay the burden on my other children. I am trying to make the only additional burden on Zoralei to be helping her dad by being his chauffeur. The other children have helped a bit more with chores, animals, and looking out for each other. If we can all take a piece of the burden, I am hoping it will not be too heavy to bear for anyone in particular. I am anxious to make sure Zoralei's load is not so great that she is prevented from being a normal teenager - pursuing schooling, friends, dating in six months, movie/relax time, homework, and flirting (wink). She had a friend coming over after school and saw one latter in the evening too. I know she was making plans for at the end of the week too. If we do not keep a good balance then her RND might not remain stable at 5/6, but go up to prior to the hospitalization and I am anxious to avoid that. We have enough to juggle without beginning that battle again.
My other children have been struggling. Ironically, it is Zoralei who seems this time to handle it best. Usually, she is the more emotional one in it all, but she hasn't been. I think she is just too busy to be emotional. The other kids did fantastic while we were in the hospital, but since getting back, they have been close to tears over some pretty trivial things and very huggy. Lots of loving being shared. It has not been easy for any of them, but they are all rising to the occasion. They really look out for each other. I am really proud of them in that way. It is not a burden that falls only on the oldest. Even our 3 year old, Renaria, feels the impact and gets a little less cuddle time and keeps making comments asking if her dad 'is feeling better?'
Friday, February 20, 2015
Stress is key to managing RND
Stress is key to managing RND. Unfortunately, stress is a very difficult to avoid in a teenager's life.
There is the typical high school melodramas amongst friends, personal insecurities, conflicts amongst family members, strong desire for independence, romantic heartbreak, physical pain from endometriosis and RND, monthly hormonal influctuations, etc. Being a teenager is codeword for stressful! Yet, stress aggravates RND and my darling daughter has had enough teen drama, particularly with peers, these past couple of weeks to create a roller coaster ride to mirror the biggest one out there. Add a fall off a horse and some stumbling during ice skating and Zoralei has been struggling to control the pain in her left arm.
On top of it all, today her dad is in the hospital for another procedure and Zoralei came home from school early because she was worried about him. She lasted less than an hour and after a seminary lesson on a young girl dying, she was pretty teared up. Her mom is having surgery in 10 days too and Zoralei has been talking about how much stress there is. She sees a counselor weekly to help keep stress under control. Honestly, I am not sure how much that helps. Overall, I think she is handling it well, but I notice that by the end of the day, especially one where she talked a lot about all these kinds of stress, that she is rubbing her arm more and retiring just a few minutes earlier. When I ask about it, she says it hurts and about how she isn't going to let it stop her. Honestly, I think it is okay to have off days, but again the hospital training has paid off. She attends counseling, is spiritually minded, takes time to get recentered when she needs it, and talks things out with friends when she is feeling overwhelmed. She is doing everything right, but stress is nearly impossible to avoid and as a result, her arm has not made as much progress as I was hoping for. To be honest, it hasn't really made much if any progress since she was released from the hospital.
Zoralei has decided to join Lacrosse next week, but the practices are 2 1/2 hours a day Monday through Friday, with Saturday meets. After 6 hours of physical exertion in the hospital daily, lacrosse will be a piece of cake. However, despite all the good reasons she has used to make her decision: credit for her diploma, meet new friends, get physically fit, have a concrete exercise program for her RND, good stress release, and to do it with a friend of hers, Zoralei is very worried about Lacrosse. She is worried about juggling her time. It is a HUGE time commitment. She is worried about having time with friends and being able to be around home enough to satisfy mom's requirements to see her once in a while, but mostly she is worried she will not have time with her friends that she finds most important to her sanity as a teenager (you know: BOYS). She is worried about being so tired that she will not stay on top of her homework after such long workouts. It is a good decision for her to do it. Yet that decision has also led to her stressing over the future affects of it. I do not believe it is helping her RND. Even though she is now running daily in preparation, the reality is that she is not finding the extra phyical exertion on her part to be helping her RND. Perhaps it is because the stress levels are still high. Even if you subscribe to Frozen's "Let it go" mentality, as a teenager or human being for that matter, escaping stress and worry in this life is very difficult. Therefore, I am not sure how we can subscribe to seeing any real progress when she is often stressed, and often over things involving her peers and outside our control.
We are encouraging her to do the Lacrosse, encouraging her to struggle to find a balance. But though I say it may help her RND, I do not insist that I believe it will do so. I think the physical exercise is a huge component, but perhaps it may be too limited a mindset. Watching for the subtle telling tales that her RND is bothering her has become my gauge how things are really going in Zoralei's life.
There is the typical high school melodramas amongst friends, personal insecurities, conflicts amongst family members, strong desire for independence, romantic heartbreak, physical pain from endometriosis and RND, monthly hormonal influctuations, etc. Being a teenager is codeword for stressful! Yet, stress aggravates RND and my darling daughter has had enough teen drama, particularly with peers, these past couple of weeks to create a roller coaster ride to mirror the biggest one out there. Add a fall off a horse and some stumbling during ice skating and Zoralei has been struggling to control the pain in her left arm.
On top of it all, today her dad is in the hospital for another procedure and Zoralei came home from school early because she was worried about him. She lasted less than an hour and after a seminary lesson on a young girl dying, she was pretty teared up. Her mom is having surgery in 10 days too and Zoralei has been talking about how much stress there is. She sees a counselor weekly to help keep stress under control. Honestly, I am not sure how much that helps. Overall, I think she is handling it well, but I notice that by the end of the day, especially one where she talked a lot about all these kinds of stress, that she is rubbing her arm more and retiring just a few minutes earlier. When I ask about it, she says it hurts and about how she isn't going to let it stop her. Honestly, I think it is okay to have off days, but again the hospital training has paid off. She attends counseling, is spiritually minded, takes time to get recentered when she needs it, and talks things out with friends when she is feeling overwhelmed. She is doing everything right, but stress is nearly impossible to avoid and as a result, her arm has not made as much progress as I was hoping for. To be honest, it hasn't really made much if any progress since she was released from the hospital.
Zoralei has decided to join Lacrosse next week, but the practices are 2 1/2 hours a day Monday through Friday, with Saturday meets. After 6 hours of physical exertion in the hospital daily, lacrosse will be a piece of cake. However, despite all the good reasons she has used to make her decision: credit for her diploma, meet new friends, get physically fit, have a concrete exercise program for her RND, good stress release, and to do it with a friend of hers, Zoralei is very worried about Lacrosse. She is worried about juggling her time. It is a HUGE time commitment. She is worried about having time with friends and being able to be around home enough to satisfy mom's requirements to see her once in a while, but mostly she is worried she will not have time with her friends that she finds most important to her sanity as a teenager (you know: BOYS). She is worried about being so tired that she will not stay on top of her homework after such long workouts. It is a good decision for her to do it. Yet that decision has also led to her stressing over the future affects of it. I do not believe it is helping her RND. Even though she is now running daily in preparation, the reality is that she is not finding the extra phyical exertion on her part to be helping her RND. Perhaps it is because the stress levels are still high. Even if you subscribe to Frozen's "Let it go" mentality, as a teenager or human being for that matter, escaping stress and worry in this life is very difficult. Therefore, I am not sure how we can subscribe to seeing any real progress when she is often stressed, and often over things involving her peers and outside our control.
We are encouraging her to do the Lacrosse, encouraging her to struggle to find a balance. But though I say it may help her RND, I do not insist that I believe it will do so. I think the physical exercise is a huge component, but perhaps it may be too limited a mindset. Watching for the subtle telling tales that her RND is bothering her has become my gauge how things are really going in Zoralei's life.
Sunday, January 4, 2015
RND not yet down to zero on the pain scale
I have not updated in a while. It has been hard to know what to write. Zoralei's RND has kind of remained at a level 5/6 on the pain scale. Mostly, the issue is whether she is exercising enough. She has made it a goal to join a sport next semester and has started to run in order to train for it. She has only gone out a couple of times, because she got mono over Christmas break and so now she is not feeling better. However, because of the hospital program, she has pushed past it more than most kids her age, still running a couple of times a week, throwing a surprise party for a friend, doing family things with us. She has needed to rest in between. When the doctor asked her whether she has been unable to do anything, her response was, "I have RND and that is all about pushing past limits." There have been some great benefits of the program at the hospital.
I have been concerned that we are not progressing. Zoralei said it is because she is good at strength training, but not good at cardio and since RND is a lactose buildup, the cardio is vital to getting it to move properly in her body. She is getting more cardio than before, but it is not enough to really make progress.
There were no strange pain episodes during driver's education. I am glad some fears are unrealized:)
Zoralei's endometriosis is growing back and so getting her RND to be pain free is really important because it compounds the endometriosis episodes. Luckily, the placement of pain is different and she can tell which one is which, another unrealized fear (Yeah!), but her nerve endings want to magnify the endometriosis to the point of being unable to function. That has been challenging during her monthly cycle.
She even has a awfully painful throat with the mono. It is like her life is one continual round of physical pain after another. I just truly feel for my daughter. But somehow we have to got to get the RND down to nothing on the pain scale, but it continues to be a challenge outside of the hospital treatment.
I have been concerned that we are not progressing. Zoralei said it is because she is good at strength training, but not good at cardio and since RND is a lactose buildup, the cardio is vital to getting it to move properly in her body. She is getting more cardio than before, but it is not enough to really make progress.
There were no strange pain episodes during driver's education. I am glad some fears are unrealized:)
Zoralei's endometriosis is growing back and so getting her RND to be pain free is really important because it compounds the endometriosis episodes. Luckily, the placement of pain is different and she can tell which one is which, another unrealized fear (Yeah!), but her nerve endings want to magnify the endometriosis to the point of being unable to function. That has been challenging during her monthly cycle.
She even has a awfully painful throat with the mono. It is like her life is one continual round of physical pain after another. I just truly feel for my daughter. But somehow we have to got to get the RND down to nothing on the pain scale, but it continues to be a challenge outside of the hospital treatment.
Monday, December 8, 2014
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.
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.
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