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.
Friday, April 24, 2015
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.
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