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.
Monday, November 17, 2014
Sunday, November 2, 2014
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.
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.
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