It has been almost eleven months since my first PAO, and five months since my second one. I'm doing well. I walk 1-2 hours a day, five-six days a week, and am usually on my feet while I'm working. For the most part, I don't have very much trouble. The biggest nuisance is the nerve damage resulting from the surgeries. Before my surgeries, the surgeon told me that four people in every hundred have nerve damage following the surgery. I'm one of those. There are a few frustrating things:
1. Showers - These can be miserable. Sometimes, if the spray of the water is on the wrong setting, the feel of it against my legs anywhere between my hips and knees is really uncomfortable and stings. Shaving is scary because I can't feel my legs, and so I have to watch really closely so I don't cut myself.
2. Some Games - You know those games where if such and such happens, you get to wail on a person and like smack their legs or whatever? Those are awful. It's not a big deal if it's my arm or my shoulder or back or my lower legs, but it produces a terrible, searing pain in my thighs and stings really badly.
3. Cold Weather - Why did I move North? It makes the pain worse. It doesn't just make the nerve pain worse, but the actual surgery site as well. It all but freezes the screws in my body.
4. Heat - When my hips hurt, sometimes I apply a heating pad. This is all fine and well for my hips, but my nerves don't like it and they sting. This stinging isn't like the others. It's bearable, just obnoxious.
Sometimes my hips still pop in and out of place. This happened on Saturday while I was on set working on a film. I happened to be on a ladder. It was kind of scary and hurt, but after a little while, I limped around like it was no big deal. It happened again a few days ago walking home from work. I sat down for a little while and popped it again, and then limped slowly home. That one was more scary because there weren't many people around and it was cold out. I still can't lay on ne side for more than ten minutes, but it's only been five months since my second surgery, so that's normal.
Well, there's an update on what the average PAO with sciatic nerve damage looks like.
Tuesday, November 12, 2013
Sunday, September 15, 2013
PAO X-Rays and Update
It has been over three months since my second surgery. My scars are symmetrical. I have quite a bit of metal in my body - four screws on each side. At my 2.5 month mark, these X-rays were taken to evaluate things. If you look closely, you can see where they cut into the bone. The right side has completely healed, but if you look at the left side of the X-ray (my right hip), near the base of the iliac crest, the top of the foramen and behind the acetabulum you can see where the bone was cut and is now healing. My hips are healing normally, and I am thankful for that.
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I still have some damage to my sciatic nerve, and I am not expecting it to correct itself. People tell me that I am being pessimistic to have this attitude. I maintain that I am not being pessimistic, but realistic. I do not expect that I will ever regain feeling in my thighs, but I am starting to be accepting of that.
I still have a fair amount of pain, and I limp sometimes, but the more time passes the less I limp. I don't have the flexibility of a dancer, but I am regaining the mobility of any functioning person, and that is incredibly refreshing.
I have one surgery left and it is no where near as intense. The surgeon will make two more incisions, one on each hip and remove the screws. (I get to keep them!) If all goes well, I will leave the hospital the same day as the surgery, and be on crutches for two to three weeks. Compared to my past recoveries, this is very exciting for me. I am excited for this surgery. I can feel the screws inside of my body, and it isn't particularly comfortable. But they won't be there much longer, and that is a refreshing thought. I will have the screws removed sometime between April and May.
Most importantly, I think I have learned a lot from this experience. It has been difficult, and I can say without reservation that it is not something that I want to go through again. But I have learned a lot and there have been a few good things that have come from this.
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I still have some damage to my sciatic nerve, and I am not expecting it to correct itself. People tell me that I am being pessimistic to have this attitude. I maintain that I am not being pessimistic, but realistic. I do not expect that I will ever regain feeling in my thighs, but I am starting to be accepting of that.
I still have a fair amount of pain, and I limp sometimes, but the more time passes the less I limp. I don't have the flexibility of a dancer, but I am regaining the mobility of any functioning person, and that is incredibly refreshing.
I have one surgery left and it is no where near as intense. The surgeon will make two more incisions, one on each hip and remove the screws. (I get to keep them!) If all goes well, I will leave the hospital the same day as the surgery, and be on crutches for two to three weeks. Compared to my past recoveries, this is very exciting for me. I am excited for this surgery. I can feel the screws inside of my body, and it isn't particularly comfortable. But they won't be there much longer, and that is a refreshing thought. I will have the screws removed sometime between April and May.
Most importantly, I think I have learned a lot from this experience. It has been difficult, and I can say without reservation that it is not something that I want to go through again. But I have learned a lot and there have been a few good things that have come from this.
Saturday, July 6, 2013
The One Month Mark
Today makes exactly one month since my second periacetabular osteotomy. Here's the update.
About a week after leaving the hospital, I started my summer semester, and used a wheelchair that week of school. Advice: If you are going to be on a lot of medication while attending school, take easy classes. A couple of weeks ago I was so drowsy and dizzy from the medications I have to take that the numbers on the board were moving in my statistics class. Talk about frustrating. Otherwise, school is going well.
I'm pretty much off the medications. I take a dose of acetaminophen or ibuprofen every morning, and even though it hurts pretty much all the time, it's pain I can tolerate, so I don't bother to drug myself up any more than absolutely necessary. I'm still taking Lyrica for nerve pain. Both thighs are numb now, thanks to some nerve damage. I don't expect it to go away. It's something I'm learning to accept and live with. The more accepting I am, the less frustrating it is.
I use a walker on days when I'm feeling really weak or am having a lot of pain. Otherwise, I use crutches. They get me less stares and I can travel much faster. They're also easier to maneuver and are less cumbersome.
It still stuns me how often people stare, point and make rude comments. And most of these people are adults. Children sometimes come up and ask me what happened, but they don't point. They don't give me rude nicknames. It also surprises me how often people will stare, open mouthed, as I'm coming down the hallway, but they won't move to get out of the way. And I have to move. A young woman with a walker isn't that weird...is it?
This morning I heard my hip crack when I tried to get up out of bed this morning. I couldn't move for a while, and it's the most severe pain I've felt in a while. After about ten minutes everything was okay.
One of the things I miss most is the ability to sleep through the night. I haven't slept all the way through the night since before surgery, and it's taking its toll. I think part of it is that it hurts to sleep on the left side because of my December PAO, but it's basically impossible to sleep on the right because of my June PAO. And sleeping on my back isn't comfortable either. In time I'm hoping it will get better. I really can't wait for these eight screws to be out of my body.
About a week after leaving the hospital, I started my summer semester, and used a wheelchair that week of school. Advice: If you are going to be on a lot of medication while attending school, take easy classes. A couple of weeks ago I was so drowsy and dizzy from the medications I have to take that the numbers on the board were moving in my statistics class. Talk about frustrating. Otherwise, school is going well.
I'm pretty much off the medications. I take a dose of acetaminophen or ibuprofen every morning, and even though it hurts pretty much all the time, it's pain I can tolerate, so I don't bother to drug myself up any more than absolutely necessary. I'm still taking Lyrica for nerve pain. Both thighs are numb now, thanks to some nerve damage. I don't expect it to go away. It's something I'm learning to accept and live with. The more accepting I am, the less frustrating it is.
I use a walker on days when I'm feeling really weak or am having a lot of pain. Otherwise, I use crutches. They get me less stares and I can travel much faster. They're also easier to maneuver and are less cumbersome.
It still stuns me how often people stare, point and make rude comments. And most of these people are adults. Children sometimes come up and ask me what happened, but they don't point. They don't give me rude nicknames. It also surprises me how often people will stare, open mouthed, as I'm coming down the hallway, but they won't move to get out of the way. And I have to move. A young woman with a walker isn't that weird...is it?
This morning I heard my hip crack when I tried to get up out of bed this morning. I couldn't move for a while, and it's the most severe pain I've felt in a while. After about ten minutes everything was okay.
One of the things I miss most is the ability to sleep through the night. I haven't slept all the way through the night since before surgery, and it's taking its toll. I think part of it is that it hurts to sleep on the left side because of my December PAO, but it's basically impossible to sleep on the right because of my June PAO. And sleeping on my back isn't comfortable either. In time I'm hoping it will get better. I really can't wait for these eight screws to be out of my body.
Sunday, June 9, 2013
Day Three in the Hospital
On day three, I woke up around five-thirty. Someone came in to do my bloodwork, but only took one sample. A nurse also quickly hooked me up to an IV again. I asked her why. She told me that my heart rate was around 120 at rest. She listened to my heart and lungs and asked if I had any chest pain. I told her I didn't, and she requested that I inform her if that changed.
It did change. While I was eating breakfast, I felt quite a bit of chest pain - as if someone were sitting on me. My oxygen levels also dropped, so I put my oxygen tubes back on and that helped a little bit.
One of Dr. Peter's assistants came in and explained things to me. He told me that my blood levels should be around forty, but that during surgery I lost a lot of blood and was now at thirty. He said that blood transfusions are given at <25, and he didn't want to give me a trnsfusion, so the fluids in my IV would hopefully compnsate for the lost blood, and that that should bring down my heart rate.
Because chest pain was added to the equation, a cardiologist came and gave me an EKG. More blood samples were drawn as well. In fact, on the third day, blood was drawn on four different occassions to check and see if anything was wrong. All of the tests came back negative, which is good. I was put back on oxygen, at least for while sleeping, since that's when I have the hardest time breathing.
My epidural was taken out yesterday morning, and in the afternoon, I walked! I first walked to the wall and back. But later, I was able to walk to the bathroom and back. They also removed my catheter, so now I actually have to get out of bed to go to the bathroom, but I am able to do that without too much trouble.
Today my grandparents (on my dad's side) visited me, as did my cousin Koltn and his girlfriend and another cousin, Adrianna. Later, Ethan came and visited me as well.
It was a very full day. A good one, but a very full one nonetheless.
It did change. While I was eating breakfast, I felt quite a bit of chest pain - as if someone were sitting on me. My oxygen levels also dropped, so I put my oxygen tubes back on and that helped a little bit.
One of Dr. Peter's assistants came in and explained things to me. He told me that my blood levels should be around forty, but that during surgery I lost a lot of blood and was now at thirty. He said that blood transfusions are given at <25, and he didn't want to give me a trnsfusion, so the fluids in my IV would hopefully compnsate for the lost blood, and that that should bring down my heart rate.
Because chest pain was added to the equation, a cardiologist came and gave me an EKG. More blood samples were drawn as well. In fact, on the third day, blood was drawn on four different occassions to check and see if anything was wrong. All of the tests came back negative, which is good. I was put back on oxygen, at least for while sleeping, since that's when I have the hardest time breathing.
My epidural was taken out yesterday morning, and in the afternoon, I walked! I first walked to the wall and back. But later, I was able to walk to the bathroom and back. They also removed my catheter, so now I actually have to get out of bed to go to the bathroom, but I am able to do that without too much trouble.
Today my grandparents (on my dad's side) visited me, as did my cousin Koltn and his girlfriend and another cousin, Adrianna. Later, Ethan came and visited me as well.
It was a very full day. A good one, but a very full one nonetheless.
Saturday, June 8, 2013
Day Two in the Hospital
Around 5:45 this morning a phlebotomist came to do blood work. He only took two samples. When he came in, he said good morning, and I returned the greeting. He asked how I was doing, and I said, "I'm great! How are you?" he said he was good. He asked for my name, which I gave him. And then before he could ask for it, I gave him my date of birth. He commented, "You have this down,". We continued to talk while he drew my blood. He said that I was way too perky for this early in the morning. He brought the syringe over and I pulled up my sleeve so he could draw. He said, "Wow, you're so proactive." I guess I am. But he's right. I do have this down. And I don't see the sense in not being perky and happy.
The surgeon's assistant came in to check on me around 6:30. He asked how I was feeling and said he thinks I'll recover from this surgery very similarly to the last one, and it's likely that I'll recover more successfully since my body won't view it as being so traumatic, seeing as I have already done this once before, and that's good news.
My physical therapists had me sit up completely straight today. I lay in the hospital bed and they moved the bed so that it became a chair. She stopped every so often so that I could get used to things, and recover from any lightheadedness. The first time I sat up straight, I made it 28 minutes before I began to feel severely dizzy. My physical therapists came in later and we repeated the process. This time, I was able to sit up without feeling too dizzy, and what dizziness was there, dissipated quickly. I ended up sitting up like that for over an hour, and only went back to my reclined position, because
Ethan came to visit me and I wanted to be really comfortable.
Ethan is pretty awesome. He drove up from Farmington, NM to keep me company while I'm in the hospital and is staying with family. He and I have a long list of movies that we plan to watch when I get home from the hospital, before I start school and work again, so we typed out that list. We also listened to music and talked. We talk about basically everything and it's really nice to have him here.
My aunt and uncle came to visit this evening as well. They brought lemon pound cake, which was delicious. It was good to see them again.
Mom and Dad washed my hair tonight. It felt amazing. It's remarkable how feeling clean helps me feel healthier and just better as a whole. We lay my bed down and I used the trapeze (equipment that helps me pull myself up and down in bed) to pull myself to the top of the bed so that my head hung off of it and into the wash basin. Dad held my neck while Mom washed my hair.
I went to bed around 2:30 a.m., simply because I had trouble sleeping. From that point, I was in and out of sleep.
The surgeon's assistant came in to check on me around 6:30. He asked how I was feeling and said he thinks I'll recover from this surgery very similarly to the last one, and it's likely that I'll recover more successfully since my body won't view it as being so traumatic, seeing as I have already done this once before, and that's good news.
My physical therapists had me sit up completely straight today. I lay in the hospital bed and they moved the bed so that it became a chair. She stopped every so often so that I could get used to things, and recover from any lightheadedness. The first time I sat up straight, I made it 28 minutes before I began to feel severely dizzy. My physical therapists came in later and we repeated the process. This time, I was able to sit up without feeling too dizzy, and what dizziness was there, dissipated quickly. I ended up sitting up like that for over an hour, and only went back to my reclined position, because
Ethan came to visit me and I wanted to be really comfortable.
Ethan is pretty awesome. He drove up from Farmington, NM to keep me company while I'm in the hospital and is staying with family. He and I have a long list of movies that we plan to watch when I get home from the hospital, before I start school and work again, so we typed out that list. We also listened to music and talked. We talk about basically everything and it's really nice to have him here.
My aunt and uncle came to visit this evening as well. They brought lemon pound cake, which was delicious. It was good to see them again.
Mom and Dad washed my hair tonight. It felt amazing. It's remarkable how feeling clean helps me feel healthier and just better as a whole. We lay my bed down and I used the trapeze (equipment that helps me pull myself up and down in bed) to pull myself to the top of the bed so that my head hung off of it and into the wash basin. Dad held my neck while Mom washed my hair.
I went to bed around 2:30 a.m., simply because I had trouble sleeping. From that point, I was in and out of sleep.
Friday, June 7, 2013
The Pre-Op, Surgery and First Day
Story time.
My pre-op was on Wednesday and was much like a pre-op for any surgery. I had to provide a urine sample, four blood samples and the answers to many questions about my medical history. I was also given a special antibiotic soap to wash my body, especially my right hip. To top it all off, in the cute little brown paper bag containing the soap, there was also an enema which I was required to give myself, and did later that night. As it is with most surgeries, I was not permitted to eat after midnight, nor was I allowed to drink water up to four hours prior to surgery.
I reported at the hospital at 6:30 a.m. on Thursday, June 6. My surgery was scheduled for 8 a.m.. I changed clothes in the exam room. I donned a hospital gown, special "tights" that help prevent blood clots, and hospital socks. Then my parents came into the exam room where we waited for everything to start happening. Nurses, anesthesiologists and the surgeon and his assistant all came in. The anesthesiologist started an IV with a solution similar to an isotonic solution, except that it had extra sodium, potassium and calcium. The nurse put a bear blanket on me. This is a "blanket" that blows up and heats the body when attached to a tube...which is then attached to a machine. I was also given celebrex, lyrica and oxycodon (medication for infection, nerve pain and a narcotic). A little cap was put around my hair, and my right hip was initialed so that the surgeon wouldn't cut into the wrong hip. The anesthesiologist put something else into my IV to help me relax shortly before taking me back into the OR. When he wheeled me away, Mom kissed my cheek and Dad kissed my forehead. They told me they love me. I was already pretty relaxed, thanks to the medication that was already in my system, but that fluid added to my IV worked quickly. It worked so quickly, that when he gave me my epidural, I didn't even feel the needle go into my back.
After that, I was given general anesthetic. Immediately afterwards, they put an oxygen mask on my face. That's the last thing I remember.
I woke up in the recovery room around 11:30 a.m., with relatively acute hip pain. The nurse standing beside my bed told me that everything had gone really well. As I did last time, I cried. I didn't sob like I did last time, but I did cry from relief.
My throat was terribly dry, but the nurse had ice for me to suck on, and that helped. Because of the epidural, I was (and still am) numb from the waist down. I was unable to move either leg at the time, and desperately wanted to move my left leg. So I asked my nurse if he would do me a favor. I asked him to move my leg back and forth at the knee. He looked at me a little funny. He must have been thinking, "Dang, this girl is high". And I was. But he did what I asked and then propped my leg with a pillow, which helped me tremendously. I sat in the recovery room for a while, and eventually headed up to my room. And here's an interesting little something. I have been assigned the exact same room that I had last time. Crazy, right? And awesome. I have a beautiful view, especially at night, because the hospital is on a hill and overlooks the city.
My parents spent about half an hour in my room with me and then left. They told me that they would be here as I wanted them to be, which I greatly appreciate. I asked them to come back around dinner time and they said that they would.
My oxygen levels dropped, so I was put on oxygen, which I am still on. I have a catheter and a PCA, which is pain medication that enters my body through an IV when I push a button. I call it my happy button. Originally, they didn't order one for me, but in the recovery room I asked where it was. They told me that because I struggled with nausea so badly last time they didn't plan to give me one and would be giving me oral medication instead. The nurse asked if I would rather have the PCA. I told her yes. I wanted to be able to control my pain and medication intake. I also told her that I would rather be nauseous and have a PCA than not.
I was in and out of sleep. One of my best friends, Ethan, came to see me. He is from New Mexico, just like I am, and planned on coming to Salt Lake City to see his family sometime over the summer, and so he arranged to come the week of my surgery so that he could keep me company in the hospital. This really means a lot to me. Ethan had been driving all day and was tired, so he didn't stay too long, and thatwas perfectly fine. He'll be here again sometime today.
My parents came around dinner time. We talked for a little bit. I brought them up to speed by telling them that Ethan had come by, and that my surgeon had come by too to tell me that everything went really well. A physical therapist also came in. He helped me sit up a little bit. We worked up to sixty-five degrees. He also put my leg in a CPN. A CPN moves the leg back and forth. Mine is set to move thirty degrees, very slowly. After catching them up, and attempting to eat, my parents and I played a few games of Skip Bo and Farkle. During our last game of Farkle, I started nodding off between each of my turns. So my parents left for the evening to let me get some rest.
My pain level on a 1-10 scale was 8 most of yesterday. This morning (the day after surgery), it's about a four. Hopefully this is maintained all day. I threw up eleven times yesterday. I couldn't even keep water down. I'm doing much better this morning.
Overall, I seem to be doing better with this surgery than the last one. I think it's because I wasn't really nervous this time. I knew what was going to happen. I haven't been as loopy either, for the record, and that's really nice. I feel a little like I'm living in a bubble and can't touch reality, but not nearly as badly as last time.
My pre-op was on Wednesday and was much like a pre-op for any surgery. I had to provide a urine sample, four blood samples and the answers to many questions about my medical history. I was also given a special antibiotic soap to wash my body, especially my right hip. To top it all off, in the cute little brown paper bag containing the soap, there was also an enema which I was required to give myself, and did later that night. As it is with most surgeries, I was not permitted to eat after midnight, nor was I allowed to drink water up to four hours prior to surgery.
I reported at the hospital at 6:30 a.m. on Thursday, June 6. My surgery was scheduled for 8 a.m.. I changed clothes in the exam room. I donned a hospital gown, special "tights" that help prevent blood clots, and hospital socks. Then my parents came into the exam room where we waited for everything to start happening. Nurses, anesthesiologists and the surgeon and his assistant all came in. The anesthesiologist started an IV with a solution similar to an isotonic solution, except that it had extra sodium, potassium and calcium. The nurse put a bear blanket on me. This is a "blanket" that blows up and heats the body when attached to a tube...which is then attached to a machine. I was also given celebrex, lyrica and oxycodon (medication for infection, nerve pain and a narcotic). A little cap was put around my hair, and my right hip was initialed so that the surgeon wouldn't cut into the wrong hip. The anesthesiologist put something else into my IV to help me relax shortly before taking me back into the OR. When he wheeled me away, Mom kissed my cheek and Dad kissed my forehead. They told me they love me. I was already pretty relaxed, thanks to the medication that was already in my system, but that fluid added to my IV worked quickly. It worked so quickly, that when he gave me my epidural, I didn't even feel the needle go into my back.
After that, I was given general anesthetic. Immediately afterwards, they put an oxygen mask on my face. That's the last thing I remember.
I woke up in the recovery room around 11:30 a.m., with relatively acute hip pain. The nurse standing beside my bed told me that everything had gone really well. As I did last time, I cried. I didn't sob like I did last time, but I did cry from relief.
My throat was terribly dry, but the nurse had ice for me to suck on, and that helped. Because of the epidural, I was (and still am) numb from the waist down. I was unable to move either leg at the time, and desperately wanted to move my left leg. So I asked my nurse if he would do me a favor. I asked him to move my leg back and forth at the knee. He looked at me a little funny. He must have been thinking, "Dang, this girl is high". And I was. But he did what I asked and then propped my leg with a pillow, which helped me tremendously. I sat in the recovery room for a while, and eventually headed up to my room. And here's an interesting little something. I have been assigned the exact same room that I had last time. Crazy, right? And awesome. I have a beautiful view, especially at night, because the hospital is on a hill and overlooks the city.
My parents spent about half an hour in my room with me and then left. They told me that they would be here as I wanted them to be, which I greatly appreciate. I asked them to come back around dinner time and they said that they would.
My oxygen levels dropped, so I was put on oxygen, which I am still on. I have a catheter and a PCA, which is pain medication that enters my body through an IV when I push a button. I call it my happy button. Originally, they didn't order one for me, but in the recovery room I asked where it was. They told me that because I struggled with nausea so badly last time they didn't plan to give me one and would be giving me oral medication instead. The nurse asked if I would rather have the PCA. I told her yes. I wanted to be able to control my pain and medication intake. I also told her that I would rather be nauseous and have a PCA than not.
I was in and out of sleep. One of my best friends, Ethan, came to see me. He is from New Mexico, just like I am, and planned on coming to Salt Lake City to see his family sometime over the summer, and so he arranged to come the week of my surgery so that he could keep me company in the hospital. This really means a lot to me. Ethan had been driving all day and was tired, so he didn't stay too long, and thatwas perfectly fine. He'll be here again sometime today.
My parents came around dinner time. We talked for a little bit. I brought them up to speed by telling them that Ethan had come by, and that my surgeon had come by too to tell me that everything went really well. A physical therapist also came in. He helped me sit up a little bit. We worked up to sixty-five degrees. He also put my leg in a CPN. A CPN moves the leg back and forth. Mine is set to move thirty degrees, very slowly. After catching them up, and attempting to eat, my parents and I played a few games of Skip Bo and Farkle. During our last game of Farkle, I started nodding off between each of my turns. So my parents left for the evening to let me get some rest.
My pain level on a 1-10 scale was 8 most of yesterday. This morning (the day after surgery), it's about a four. Hopefully this is maintained all day. I threw up eleven times yesterday. I couldn't even keep water down. I'm doing much better this morning.
Overall, I seem to be doing better with this surgery than the last one. I think it's because I wasn't really nervous this time. I knew what was going to happen. I haven't been as loopy either, for the record, and that's really nice. I feel a little like I'm living in a bubble and can't touch reality, but not nearly as badly as last time.
Friday, May 10, 2013
PAO Good to Knows: Hospitalization
Surgery number two is four weeks from yesterday. As I remarked previously, this time I am not nervous, because I know what I am getting myself into. ... This time, I simply dread the impending surgery. Having had this surgery before, I have a little more knowledge about how I can be better prepared for the surgery. I've been thinking a lot about what kinds of advice I can pass on for those who will undergo a periacetabular osteotomy. Here is some advice for the paitent themselves and for family/friends during hospitalization:
For the patient:
Just let it happen. I know that that's easier said than done, but don't resist. You will have an epidural, a cathater, an enema and be unable to stand for a couple of days. Walking down the hall will make you more exhausted than you have ever been in your life. I'm not trying to be a downer. I'm just being completely honest. Blood will be drawn, and honestly, you will feel like half a human. That's the worst part. You have no control of your body, and the nurses know as much about your body as you do...and probably more. If you resist everything that's going to happen, it will be harder. If you accept it as life and are determined to be positive rather than bitter, and not resist, then it will be much easier. This is advice a dear friend shared with me who has had some challenges with her health that have been much more significant than my own, and I think it's worth passing on.
Also, be patient. Be patient with your nurses, your family and yourself. If you are like me, you are going to be frustrated by things that typically wouldn't upset you in the slightest. I was. Remember that your nurses and your surgeon have a lot to do. You are not the king or queen of the universe, nor are you the only patient in the hospital. And be patient with your family. There's a chance that they'll be really supportive. And that's great! But there's also a chance that they will spend time with you that exceeds your strength. Understand that they have good intentions. And be patient when people don't do things exactly when you want.
For example, in the hospital, my parents washed my hair. And outside of the hospital, before I had a shower stool, my family washed my hair as well. It was really hard for me to be patient when my hair was dirty. I couldn't ask them to wash my hair for me as often as I would wash it, because I didn't want to be anymore burdensome than I already was. But hearing "later" when your hair is really dirty is really frustrating. Because there's nothing you can do about it, and you know that you would feel much better if you were clean. But try to be patient. They are busy people and they have needs too.
Most of all, be patient with yourself. Don't push yourself and don't get angry with yourself when you're unable to do things that you could normally do. Yes, it will be frustrating. You will feel like half a human being. And you will probably hate it - if you're anything like me. You will be frustrated with your body because of it's sudden limitations. Try not to be. Be patient.
Accept help from other people. Yep. Time to get off your high horse and accept that you are largely helpless and need people to do everything for you - to help you get out of bed, help you get dressed, help you in and out of the car, etc.And you will even need help at three in the morning to go to the bathroom. Don't be afraid to ask for it. Stop being stubborn. You need help.
For the friends/family of the patient:
Sometimes it is perfectly fine to make jokes about the surgery. But understand that this is serious. And sometimes joking about a situation like this makes the patient feel annoyed and embarrasseed. It can also make them feel like you really empathize with the situation. It's not funny! Especially if the person is nervous. It doesn't help. It makes things worse. So don't tease them about the the cathater or the enema or the stupid hospital socks, or the screws or anything else. Don't laugh when they puke or make jokes about their inability to walk. (But don't be too serious either! It's not a tragic event.)
Don't wear our your welcome. Visits are wonderful. I greatly appreciated all of the family that came to see me. But make sure you don't stay to long, and don't lounge around too much either. I remember that I was always very excited to see people who visited, and I appreciated my parent's support and attention. However, at the same time, I really just wanted to be left alone. I was tired. You have to understand that I didn't get much sleep at night. Nurses come in every few hours, and I had trouble sleeping anyway. I typically received one to three hours of sleep every night. In addition, my body was exhausted - it had, after all, taken quite a beating. So when you visit, be aware of the patient. If they seem particularly tired, leave. Hours and hours of lounging around their room isn't really necessary. If the patient is at all like me, they will welcome visitors, but greatly appreciate and desire privacy.
Just a few little pieces of information. As I get closer to the surgery, I'll post a list of what to bring to the hospital, post-op advice and so forth.
Four weeks. Just four weeks.
For the patient:
Just let it happen. I know that that's easier said than done, but don't resist. You will have an epidural, a cathater, an enema and be unable to stand for a couple of days. Walking down the hall will make you more exhausted than you have ever been in your life. I'm not trying to be a downer. I'm just being completely honest. Blood will be drawn, and honestly, you will feel like half a human. That's the worst part. You have no control of your body, and the nurses know as much about your body as you do...and probably more. If you resist everything that's going to happen, it will be harder. If you accept it as life and are determined to be positive rather than bitter, and not resist, then it will be much easier. This is advice a dear friend shared with me who has had some challenges with her health that have been much more significant than my own, and I think it's worth passing on.
Also, be patient. Be patient with your nurses, your family and yourself. If you are like me, you are going to be frustrated by things that typically wouldn't upset you in the slightest. I was. Remember that your nurses and your surgeon have a lot to do. You are not the king or queen of the universe, nor are you the only patient in the hospital. And be patient with your family. There's a chance that they'll be really supportive. And that's great! But there's also a chance that they will spend time with you that exceeds your strength. Understand that they have good intentions. And be patient when people don't do things exactly when you want.
For example, in the hospital, my parents washed my hair. And outside of the hospital, before I had a shower stool, my family washed my hair as well. It was really hard for me to be patient when my hair was dirty. I couldn't ask them to wash my hair for me as often as I would wash it, because I didn't want to be anymore burdensome than I already was. But hearing "later" when your hair is really dirty is really frustrating. Because there's nothing you can do about it, and you know that you would feel much better if you were clean. But try to be patient. They are busy people and they have needs too.
Most of all, be patient with yourself. Don't push yourself and don't get angry with yourself when you're unable to do things that you could normally do. Yes, it will be frustrating. You will feel like half a human being. And you will probably hate it - if you're anything like me. You will be frustrated with your body because of it's sudden limitations. Try not to be. Be patient.
Accept help from other people. Yep. Time to get off your high horse and accept that you are largely helpless and need people to do everything for you - to help you get out of bed, help you get dressed, help you in and out of the car, etc.And you will even need help at three in the morning to go to the bathroom. Don't be afraid to ask for it. Stop being stubborn. You need help.
For the friends/family of the patient:
Sometimes it is perfectly fine to make jokes about the surgery. But understand that this is serious. And sometimes joking about a situation like this makes the patient feel annoyed and embarrasseed. It can also make them feel like you really empathize with the situation. It's not funny! Especially if the person is nervous. It doesn't help. It makes things worse. So don't tease them about the the cathater or the enema or the stupid hospital socks, or the screws or anything else. Don't laugh when they puke or make jokes about their inability to walk. (But don't be too serious either! It's not a tragic event.)
Don't wear our your welcome. Visits are wonderful. I greatly appreciated all of the family that came to see me. But make sure you don't stay to long, and don't lounge around too much either. I remember that I was always very excited to see people who visited, and I appreciated my parent's support and attention. However, at the same time, I really just wanted to be left alone. I was tired. You have to understand that I didn't get much sleep at night. Nurses come in every few hours, and I had trouble sleeping anyway. I typically received one to three hours of sleep every night. In addition, my body was exhausted - it had, after all, taken quite a beating. So when you visit, be aware of the patient. If they seem particularly tired, leave. Hours and hours of lounging around their room isn't really necessary. If the patient is at all like me, they will welcome visitors, but greatly appreciate and desire privacy.
Just a few little pieces of information. As I get closer to the surgery, I'll post a list of what to bring to the hospital, post-op advice and so forth.
Four weeks. Just four weeks.
Friday, April 19, 2013
Surgery #2 Scheduled
My second periacetabular osteotomy is scheduled for June 6th. Once again, Dr. Chris Peters will perform the surgery, and it will be at the University of Utah Medical Center. I am determined to try to be better about blogging in the hospital, so that I can be more detailed about what the experience is like. This is after all, a blog meant not only to be read by my friends and family, but to be read by other individuals with hip dysplasia who have to have this surgery (there just really isn't all that much information out there!).
Last time I was nervous. This time, I just dread it. I remember what it was like, and I didn't like it. But then, no one likes having to ask their mother to put their socks on for them, or call their brother at three in the morning to help them get out of bed so that they can go to the bathroom. It's just not fun. It's painful, and it's really frustrating. I have not recovered 100% from the last surgery,which I expected. My left leg is still numb from nerve damage, which is also to be expected.
So why am I going ahead and having the next surgery??
Well...because the surgery is fairly new, we don't really know the ong term effects. However, doctors believe that if I have this surgery, I am less likely to have arthiritis (which a couple doctors told me I might very well have by age fourty without the PAO's) and I am less likely to need total hip replacements (which have to be replaced again and again). Apparently it is more difficult to recover from a PAO than from a total hip replacement, but in the long run, it's a much better deal, especially for young people who wish to continue to be active...like me. (Disclaimer: I don't know this for sure, that's just what I've heard and read.) Hip replacements are significantly more restrictive than PAO's, even though the recovery time is longer. And here's the other thing - I want to be a mom. And pregnancy with little bitty hips, stricken with hip dysplasia...now, that just doesn't sound like very much fun, does it? When I used to babysit kids, holding small children on my hip hurt after only twenty minutes, sometimes even five. I don't want to be a mom who can't hold her kids, has arthiritis, and desperately needs hip replacements far too early in life. And while it's inconvenient timing, this is the most convenient it's going to get, and in the long run, I believe that it will be for the best.
So...I have six weeks and six days to get in a whole lot of living - walking, dancing, playing, working, and so forth before surgery. And let me tell you something - I plan on using every single day.
Last time I was nervous. This time, I just dread it. I remember what it was like, and I didn't like it. But then, no one likes having to ask their mother to put their socks on for them, or call their brother at three in the morning to help them get out of bed so that they can go to the bathroom. It's just not fun. It's painful, and it's really frustrating. I have not recovered 100% from the last surgery,which I expected. My left leg is still numb from nerve damage, which is also to be expected.
So why am I going ahead and having the next surgery??
Well...because the surgery is fairly new, we don't really know the ong term effects. However, doctors believe that if I have this surgery, I am less likely to have arthiritis (which a couple doctors told me I might very well have by age fourty without the PAO's) and I am less likely to need total hip replacements (which have to be replaced again and again). Apparently it is more difficult to recover from a PAO than from a total hip replacement, but in the long run, it's a much better deal, especially for young people who wish to continue to be active...like me. (Disclaimer: I don't know this for sure, that's just what I've heard and read.) Hip replacements are significantly more restrictive than PAO's, even though the recovery time is longer. And here's the other thing - I want to be a mom. And pregnancy with little bitty hips, stricken with hip dysplasia...now, that just doesn't sound like very much fun, does it? When I used to babysit kids, holding small children on my hip hurt after only twenty minutes, sometimes even five. I don't want to be a mom who can't hold her kids, has arthiritis, and desperately needs hip replacements far too early in life. And while it's inconvenient timing, this is the most convenient it's going to get, and in the long run, I believe that it will be for the best.
So...I have six weeks and six days to get in a whole lot of living - walking, dancing, playing, working, and so forth before surgery. And let me tell you something - I plan on using every single day.
Thursday, April 11, 2013
Never on the Sidelines
In my last entry, I talked about how important it is to not let any challenges get in the way of living life to the fullest. And I believe that very fully.
At this point in my life, I am unable to dance. I still have my technique, but I have lost a large amount of my flexibility, as well as my strength. I can't even do the splits anymore - something that was easy and painless only a few month ago.
While I danced before training at Mann Dance Academy, I consider it "my studio" - not in the sense that I own it, but in the sense that it's like home to me. I trained there for ten years, and for much of that, spent between twenty and forty hours a week there. Last night, at the college, Mann Dance Academy had their Solos and Ensambles Show. This performance serves as a preparation for those competing at Cathy Roe's Ultimate Dance Competition. It's really beneficial to have a performance under your belt before you compete, and naturally, the more performances the better. (I love performing. Being on stage and giving everything I've got to an audience is one of the best feelings in the world.)
Obviously, I was unable to perform in this show - not as a dancer, anyway. But I did help out in other ways. I ran the light and sound boards in the booth, which is also something I enjoy doing. The experience was bittersweet. I miss dancing, and I wanted to be on stage dancing, the way I've been doing for so many years in the past. But it was nice to still be involved in the show.
Even though I wasn't able to do something that fills me with so much life and joy, I was still able to be a part of it in another way, and that was really nice. Sometimes that's how life works - we aren't able to do exactly what we want, the way that we want to do it, but we are still able to involve ourselves in some way, and that also brings us joy and fulfillment and satisfaction.
And now I have to give a shout out to a couple of my girls.
One of my students I will simply call H. She is a young teenager, and is a talented dancer. This year, she asked me to choreograph her solo, which I was more than happy to do. She selected the song Breath of Life to be her piece (taken from the soundtrack of Snow White and the Huntsman). The genre she wanted was contemporary. As soon as I heard the piece, choreographic possibilities exploded inside of my brain. Concepts and ideas flooded me, and I was so excited to be able to work with H. She is extremely talented, and works hard (hence the talent). She is also a lovable, fun, bright individual, and was a pleasure to work with.
I decided to push her limits. When I was choreographing I told her I was going to make the dance challenging (what's the point if it's easy?), but that if by competition time there were some things she hadn't quite gotten the hang of, that I would adjust and simplify them.
The dance is incredibly athletic. It requires a lot of strength and endurance, and I was hard on her. I wasn't sure if H. would be able to execute the dance for competition, since by the end of a run she was tired and lacked energy. But she did it.
I watched the dance carefully to see what she had done with it - if she had simplified it on her own, if she would execute it with the energy it needed, if she would tell the story - if she would satisfy the vision in my head.
That's what happens to artists. They have a vision in their heads, and they want very much for it to be met. With visual artists, they solely control whether or not their vision is completed and materialized. But with performing arts a director/choreographer, is taking her vision and giving it to someone else, and while she can work incredibly hard to help the performer achieve the vision, ultimately, that choreographer has to let go and leave her work in the hands of the performer. This is actually hard to do. Because you want your vision to be materialized in it's fullest, not just partially, or even mostly.
Last night, H. materialized my vision. She gave me the power I wanted. She exceeded my expectations. He entire body was filled with energy, so much so that there was even tangible energy coming out of her fingertips.
Before the show, she and I had been talking about some things. I told H. that when she performed she had to take every emotion in her body and let it fill the dance. I told her to take all of the passion, every frustration, every hope, everything inside of her and let it be the driving force. She did it.
I love it when a performer can produce the magical creation inside of my head. I was so incredibly proud of her, and wish her the best of luck at competition.
My other dancer is J. J. chose "You Take Me the Way I Am" by Ingrid Michaelson. This dance is a direct contrast from H.'s piece. It is in no way intense, and isn't all that athletic. It's a sweet, somewhat playful piece, and the movement is meant to be much more casual and happy-go-lucky. I found it more challenging to choreograph this piece, because I am a more intense dancer. I like dancing with strong, powerful emotions driving me.
Still, I enjoyed this piece. J. is so much fun to work with. She is delightful and funny. She is intelligent and she also works hard, and I was very pleased with her work as well.
Again, I wondered what J. would do with the piece I gave her. Would she give me my vision?
Here's where things differed a little, and I was pleasantly surprised. J. did not meet my vision. But she gave me something else. Something extremely interesting, that I thoroughly enjoyed - something that a choreographer cannot give a performer. When J. performed the dance, I saw her personality. She wasn't some dancer, performing some random dance that some random choreographer had given her. She was just J. And that was beautiful. J.'s personality exploded out of her in the dance, and it was delightful to watch. She didn't give me my vision - but I think she gave me something just as valuable, if not more so. I loved that who J. is was so excellently projected.
I am very proud of my two dancers and wish them the best of luck at regionals this weekend. I miss not being able to dance. I wanted so badly to be on stage with them, but I am so grateful that I am able to participate in dance in other ways - that I can extend my passion for dance to others, and still create. I am thankful that I was able to operate the light and sound boards yesterday so that I could still be an active participant in the show.
Sometimes life throws things at us that we would rather not have. But with it come other opportunities for growth and fulfillment and joy. Just because we can't do the things we want to doesn't mean that we have to sit on the sidelines and let other people live our dreams for us. We can always still contribute. No joy. No fulfillment. No light comes from sitting on the sidelines. The sidelines are a gloomy place.
So why sit there? Get up and do something with your life. Make something happen. Find something that fills you with joy and light - something that makes you fill fulfilled and alive - something that not only fills your entire soul, but cannot be contained by it, and explodes out of you in every direction.
At this point in my life, I am unable to dance. I still have my technique, but I have lost a large amount of my flexibility, as well as my strength. I can't even do the splits anymore - something that was easy and painless only a few month ago.
While I danced before training at Mann Dance Academy, I consider it "my studio" - not in the sense that I own it, but in the sense that it's like home to me. I trained there for ten years, and for much of that, spent between twenty and forty hours a week there. Last night, at the college, Mann Dance Academy had their Solos and Ensambles Show. This performance serves as a preparation for those competing at Cathy Roe's Ultimate Dance Competition. It's really beneficial to have a performance under your belt before you compete, and naturally, the more performances the better. (I love performing. Being on stage and giving everything I've got to an audience is one of the best feelings in the world.)
Obviously, I was unable to perform in this show - not as a dancer, anyway. But I did help out in other ways. I ran the light and sound boards in the booth, which is also something I enjoy doing. The experience was bittersweet. I miss dancing, and I wanted to be on stage dancing, the way I've been doing for so many years in the past. But it was nice to still be involved in the show.
Even though I wasn't able to do something that fills me with so much life and joy, I was still able to be a part of it in another way, and that was really nice. Sometimes that's how life works - we aren't able to do exactly what we want, the way that we want to do it, but we are still able to involve ourselves in some way, and that also brings us joy and fulfillment and satisfaction.
And now I have to give a shout out to a couple of my girls.
One of my students I will simply call H. She is a young teenager, and is a talented dancer. This year, she asked me to choreograph her solo, which I was more than happy to do. She selected the song Breath of Life to be her piece (taken from the soundtrack of Snow White and the Huntsman). The genre she wanted was contemporary. As soon as I heard the piece, choreographic possibilities exploded inside of my brain. Concepts and ideas flooded me, and I was so excited to be able to work with H. She is extremely talented, and works hard (hence the talent). She is also a lovable, fun, bright individual, and was a pleasure to work with.
I decided to push her limits. When I was choreographing I told her I was going to make the dance challenging (what's the point if it's easy?), but that if by competition time there were some things she hadn't quite gotten the hang of, that I would adjust and simplify them.
The dance is incredibly athletic. It requires a lot of strength and endurance, and I was hard on her. I wasn't sure if H. would be able to execute the dance for competition, since by the end of a run she was tired and lacked energy. But she did it.
I watched the dance carefully to see what she had done with it - if she had simplified it on her own, if she would execute it with the energy it needed, if she would tell the story - if she would satisfy the vision in my head.
That's what happens to artists. They have a vision in their heads, and they want very much for it to be met. With visual artists, they solely control whether or not their vision is completed and materialized. But with performing arts a director/choreographer, is taking her vision and giving it to someone else, and while she can work incredibly hard to help the performer achieve the vision, ultimately, that choreographer has to let go and leave her work in the hands of the performer. This is actually hard to do. Because you want your vision to be materialized in it's fullest, not just partially, or even mostly.
Last night, H. materialized my vision. She gave me the power I wanted. She exceeded my expectations. He entire body was filled with energy, so much so that there was even tangible energy coming out of her fingertips.
Before the show, she and I had been talking about some things. I told H. that when she performed she had to take every emotion in her body and let it fill the dance. I told her to take all of the passion, every frustration, every hope, everything inside of her and let it be the driving force. She did it.
I love it when a performer can produce the magical creation inside of my head. I was so incredibly proud of her, and wish her the best of luck at competition.
My other dancer is J. J. chose "You Take Me the Way I Am" by Ingrid Michaelson. This dance is a direct contrast from H.'s piece. It is in no way intense, and isn't all that athletic. It's a sweet, somewhat playful piece, and the movement is meant to be much more casual and happy-go-lucky. I found it more challenging to choreograph this piece, because I am a more intense dancer. I like dancing with strong, powerful emotions driving me.
Still, I enjoyed this piece. J. is so much fun to work with. She is delightful and funny. She is intelligent and she also works hard, and I was very pleased with her work as well.
Again, I wondered what J. would do with the piece I gave her. Would she give me my vision?
Here's where things differed a little, and I was pleasantly surprised. J. did not meet my vision. But she gave me something else. Something extremely interesting, that I thoroughly enjoyed - something that a choreographer cannot give a performer. When J. performed the dance, I saw her personality. She wasn't some dancer, performing some random dance that some random choreographer had given her. She was just J. And that was beautiful. J.'s personality exploded out of her in the dance, and it was delightful to watch. She didn't give me my vision - but I think she gave me something just as valuable, if not more so. I loved that who J. is was so excellently projected.
I am very proud of my two dancers and wish them the best of luck at regionals this weekend. I miss not being able to dance. I wanted so badly to be on stage with them, but I am so grateful that I am able to participate in dance in other ways - that I can extend my passion for dance to others, and still create. I am thankful that I was able to operate the light and sound boards yesterday so that I could still be an active participant in the show.
Sometimes life throws things at us that we would rather not have. But with it come other opportunities for growth and fulfillment and joy. Just because we can't do the things we want to doesn't mean that we have to sit on the sidelines and let other people live our dreams for us. We can always still contribute. No joy. No fulfillment. No light comes from sitting on the sidelines. The sidelines are a gloomy place.
So why sit there? Get up and do something with your life. Make something happen. Find something that fills you with joy and light - something that makes you fill fulfilled and alive - something that not only fills your entire soul, but cannot be contained by it, and explodes out of you in every direction.
Monday, April 1, 2013
Maggie
I only have to go to physical therapy once a week now instead of twice a week. I am making good progress, according to my physical therapist. I am getting stronger. (I'm not boasting, I'm quoting her.) Before, she could barely touch me or move me, and I was in a large amount of pain. And while I'm still in pain a lot, the pain is not only less frequent, but less intense. My hip still pops quite a bit, and once in a while (two nights ago, for example), I will wake up in the middle of the night with a piercing pain in my hip. It feels like repeatedly getting a shot with the needle they used to give me an MRI arthrogram. Thankfully, like I said earlier, the pain is less frequent and less intense, and I am very grateful for that.
Outside of my hips, life just keeps going. And that's the good thing. I do not believe that someone should decide not to do something, or just sit around because they happen to have some kind of disability, or health problem. Sure, things are limiting. But people can still learn and grow and be successful.
One of the people that taught me this is a remarkable young woman named Maggie Dingwall. She passed away the day before my surgery, at the age of seventeen. Maggie Dingwall battled cystic fibrosis. We met when we were nine or ten years old. We danced together. Imagine. A girl with cystic fibrosis dancing multiple hours a week, working just as hard as the rest of us, if not harder. I was one of the first people at the dance studio who knew she had cystic fibrosis. Understandably, at that age, she didn't really want people to know about it, and she swore me to secrecy. As she got older, she realized that it wasn't anything to be ashamed of.
I want to be like Maggie when I grow up. I want to be the hard worker that she was. I want to be just as strong, and optimistic. Maggie never asked for pity. She never expected people to treat her better than everyone else. She took the cards she was dealt and created a life more full of living than anyone I have ever met. I have tried to emulate her. I started going to school full time three weeks after surgery, walker, and then cane, in tow. I choreographed and assistant stage managed San Juan College's production of "You Can't Take it with You". And now, I'm back at work, running up and down stairs, carrying platforms and flying in curtains and electrics. That's the point. Don't let things hold you back. Maybe you can't do everything you want to do. But you can do something. And you can make a good life for yourself. Create a life for yourself that is as full of living as you can make it.
Because of my surgery, and where it fell in conjunction with Maggie's death, I didn't get to go to her memorial service. I never really got to say goodbye. People don't think I think about her. But I do. I think about her a lot. I try to emulate her strength, and her positive, resilient nature. And truth is, I miss her. I think everyone who got to know her does.
Her motto was "just breathe". It's something that everyone, not only people with CF can apply to their lives. Life happens. Sometimes we get dealt rotten cards. Sometimes things happen that just aren't fair. Someitmes life is cruel and heartwrenching. But if we "just breathe". If we just keep going. If we just relax and do the best we can, we make it so much farther. Things work out, in their own way.
So here's the challenge:
Outside of my hips, life just keeps going. And that's the good thing. I do not believe that someone should decide not to do something, or just sit around because they happen to have some kind of disability, or health problem. Sure, things are limiting. But people can still learn and grow and be successful.
One of the people that taught me this is a remarkable young woman named Maggie Dingwall. She passed away the day before my surgery, at the age of seventeen. Maggie Dingwall battled cystic fibrosis. We met when we were nine or ten years old. We danced together. Imagine. A girl with cystic fibrosis dancing multiple hours a week, working just as hard as the rest of us, if not harder. I was one of the first people at the dance studio who knew she had cystic fibrosis. Understandably, at that age, she didn't really want people to know about it, and she swore me to secrecy. As she got older, she realized that it wasn't anything to be ashamed of.
I want to be like Maggie when I grow up. I want to be the hard worker that she was. I want to be just as strong, and optimistic. Maggie never asked for pity. She never expected people to treat her better than everyone else. She took the cards she was dealt and created a life more full of living than anyone I have ever met. I have tried to emulate her. I started going to school full time three weeks after surgery, walker, and then cane, in tow. I choreographed and assistant stage managed San Juan College's production of "You Can't Take it with You". And now, I'm back at work, running up and down stairs, carrying platforms and flying in curtains and electrics. That's the point. Don't let things hold you back. Maybe you can't do everything you want to do. But you can do something. And you can make a good life for yourself. Create a life for yourself that is as full of living as you can make it.
Because of my surgery, and where it fell in conjunction with Maggie's death, I didn't get to go to her memorial service. I never really got to say goodbye. People don't think I think about her. But I do. I think about her a lot. I try to emulate her strength, and her positive, resilient nature. And truth is, I miss her. I think everyone who got to know her does.
Her motto was "just breathe". It's something that everyone, not only people with CF can apply to their lives. Life happens. Sometimes we get dealt rotten cards. Sometimes things happen that just aren't fair. Someitmes life is cruel and heartwrenching. But if we "just breathe". If we just keep going. If we just relax and do the best we can, we make it so much farther. Things work out, in their own way.
So here's the challenge:
- Create a life full of living
- Be positive
- Be resilient
- Just breathe
Tuesday, March 19, 2013
Three Months
It's been a long time since I posted. Yesterday marked three months since my first PAO.
I have been going to physical therapy twice a week for almost a month now. Most people dislike physical therapy, and I am one of them! And because my hip needs the physical therapy, sometimes working with the therapist can be awkward and uncomfortable. And it's painful! Sometimes when the therapist is massaging and working on my hip, she'll put her hand right where one of the screws is, and I feel a terrible, driving pressure. She spends a lot of time working on my soas muscle as well as my adductors. On the upside, I am improving. When I first started physical therapy, I could only sit on the bike for three minutes (though my hip had started cramping at forty-five seconds). Yesterday, I made it ten minutes, and I probably could have gone a couple of minutes longer.
The side of my leg is still numb. I can't feel it when something is against it. For example, when I shave, I can't feel the razor there, and honestly, it's a little scary. Nerve damage doesn't hurt. But it's almost worse to feel nothing. Because when you can't feel anything, even the touch of a hand, you feel vulnerable.
I am still in pain much of the time. My hip pops a lot, but it doesn't dislocate anymore (how can it with so many screws to hold it in place?). I have also lost a very large portion of my flexibility - over half, and my muscles have atrophied considerably.
To be completely honest, I am frustrated. This surgery was major, and I know that it's going to take quite some time before I'm back to normal, and that there's a pretty good chance I never will be completely normal. But this is really hard. I am tired of being in pain all the time. I'm tired of not being able to do the things that normal people my age, and even twice my age do. For example, I work in the theatre department at San Juan College. After a two hour shift filled with lots of lifting, and stair climbing, I was exhausted. Before surgery, I had done the same thing for fourteen hours, and hadn't thought anything of it. And I don't see an end in sight.
On the upside, I have healed enough to have a job again, and so that's good. I'm doing well in all of my classes, and so, even with the whole hip situation, I'm managing to move forward with my life.
I have been going to physical therapy twice a week for almost a month now. Most people dislike physical therapy, and I am one of them! And because my hip needs the physical therapy, sometimes working with the therapist can be awkward and uncomfortable. And it's painful! Sometimes when the therapist is massaging and working on my hip, she'll put her hand right where one of the screws is, and I feel a terrible, driving pressure. She spends a lot of time working on my soas muscle as well as my adductors. On the upside, I am improving. When I first started physical therapy, I could only sit on the bike for three minutes (though my hip had started cramping at forty-five seconds). Yesterday, I made it ten minutes, and I probably could have gone a couple of minutes longer.
The side of my leg is still numb. I can't feel it when something is against it. For example, when I shave, I can't feel the razor there, and honestly, it's a little scary. Nerve damage doesn't hurt. But it's almost worse to feel nothing. Because when you can't feel anything, even the touch of a hand, you feel vulnerable.
I am still in pain much of the time. My hip pops a lot, but it doesn't dislocate anymore (how can it with so many screws to hold it in place?). I have also lost a very large portion of my flexibility - over half, and my muscles have atrophied considerably.
To be completely honest, I am frustrated. This surgery was major, and I know that it's going to take quite some time before I'm back to normal, and that there's a pretty good chance I never will be completely normal. But this is really hard. I am tired of being in pain all the time. I'm tired of not being able to do the things that normal people my age, and even twice my age do. For example, I work in the theatre department at San Juan College. After a two hour shift filled with lots of lifting, and stair climbing, I was exhausted. Before surgery, I had done the same thing for fourteen hours, and hadn't thought anything of it. And I don't see an end in sight.
On the upside, I have healed enough to have a job again, and so that's good. I'm doing well in all of my classes, and so, even with the whole hip situation, I'm managing to move forward with my life.
Thursday, February 7, 2013
When it's Easier to be Strong
As it turns out, I am unable to sleep tonight...well, it's morning now. I usually stay up until one or so, but months of not going to sleep until sometime between one and five in the morning gets exhausting pretty quickly. (I haven't slept well since surgery.) Anyway, my sleep pattern is all screwed up, and while I would like to sleep, I am unable to. I think it's because there is a lot going on inside of my head right now.
One of the things I keep thinking about is that sometimes it's easier to be strong when there is someone to be strong for, and when it isn't just for yourself. When you have to be strong to help a person you love, and to keep them going, it's easier. When you're helping others rise, it's easy to be strong. There is a reason to be strong - someone to be strong for. It's as if while making everything okay for that person, you are making things okay for yourself.
And this is really a beautiful thing. The problem is, sometimes you're left alone with your thoughts and there is no one to strengthen, and so you find yourself weak. Or maybe it's not weak. Maybe it's just that you don't feel as strong as you would like to be.
Yes, it's short. And to some it may be pointless. But I've gotten some thoughts out of my head and written down, and that, if nothing else, feels good. Sometimes people just need to get things onto paper. It makes things seem clearer. It can be calming. ...and now I'm rambling. Well, that's my thought for the evening....morning...for now.
One of the things I keep thinking about is that sometimes it's easier to be strong when there is someone to be strong for, and when it isn't just for yourself. When you have to be strong to help a person you love, and to keep them going, it's easier. When you're helping others rise, it's easy to be strong. There is a reason to be strong - someone to be strong for. It's as if while making everything okay for that person, you are making things okay for yourself.
And this is really a beautiful thing. The problem is, sometimes you're left alone with your thoughts and there is no one to strengthen, and so you find yourself weak. Or maybe it's not weak. Maybe it's just that you don't feel as strong as you would like to be.
Yes, it's short. And to some it may be pointless. But I've gotten some thoughts out of my head and written down, and that, if nothing else, feels good. Sometimes people just need to get things onto paper. It makes things seem clearer. It can be calming. ...and now I'm rambling. Well, that's my thought for the evening....morning...for now.
Wednesday, February 6, 2013
Post-Op Results
It has been just over seven weeks since my first PAO. I had my six week post-op in Salt Lake City, Utah a week ago. I no longer use the walker, but am now required to use a cane for the next 2-4 weeks. I am still in pain a lot. The amount of pain has decreased and at this point, is basically equivalent to what it was before surgery. The pain is expected to subside and be completely gone by April.
There is some nerve damage, and because of it my thigh feels numb - the way it would if I were on Novocaine. The doctor said that this most likely isn't permanant but that it will probably be several months before the nerve heals and the numbness goes away.
I am still weak. Because of my dance training, I have very muscular legs. They're pretty solid. But the muscle atrophy has made my left leg considerably smaller than the right. My range of motion is no where near what it used to be, and my hip still pops quite a bit. I still get tired easily and without the cane I walk with a slight-moderate limp. Sometimes I can't support my weight very well, and honestly, that's just a little bit scary. I have fallen a couple of times.
At my post-op, more X-rays were taken to look at how my hip was healing. I hadn't gotten to see X-rays while I was in the hospital, and so it was my first time seeing what my hip looked like because of my PAO. There is a very thin, long gap from the base of the left hip, which makes a sagital cut up, almost entirely through it. The top of the cut looks fuzzy in the X-ray because the bone is healing and beginning to regenerate. There are four screws in my hips, the longest ones being 10 cm in length.
My range of motion is nowhere near where I would like it to be. Everyone keeps telling me that I will be able to dance eventually, but honestly, I can only extend my leg to about 45 degrees, as opposed to 190 degrees, which is really frustrating. I'm sure that in time I could get that range of motion back, but that's 145 degrees to make up for, and I feel my bones stopping me every time I try to increase that range of motion.
Many people keep telling me that I'm being negative in thinking I won't ever be able to dance the way I used to. And here's the thing: I'm right. Maybe I'll be able to dance phenominally again. Maybe I do get my range of motion back. But my body will never work the way that it used to. Because it's not the same anymore. It will never work the same, even if it works well. I will have to get used to everything again. I will have to retrain my body. My brain and muscles remember how to work and what to do. But after not dancing for so long, they lose their technique. They get lazy and sloppy. They forget how to work correctly. I can't help but feel that that part of my life is over. Truth is, I just don't want to get my hopes up. That way, I won't be disappointed if I'm unable to continue dancing, and I will be very pleased if I am able to. I'm not being pessimistic. I'm just being realistic. It's easier to deal with disappointment.
And here's the other thing: I understand that whatever happens is supposed to happen. Maybe I'm not supposed to keep dancing. That sentence just about kills me, but maybe it's true. About a year and a half ago, I felt very strongly that I wasn't supposed to major in dance. I felt very strongly, and received spiritual impressions that I have many other talents that I am unaware of and need to discover and develop and that the Lord has something else in mind for me. I have no idea what that something else is. Whatever it is, I'll find it. And I trust that I will find something to fill the empty space inside of me that dance used to fill.
There is some nerve damage, and because of it my thigh feels numb - the way it would if I were on Novocaine. The doctor said that this most likely isn't permanant but that it will probably be several months before the nerve heals and the numbness goes away.
I am still weak. Because of my dance training, I have very muscular legs. They're pretty solid. But the muscle atrophy has made my left leg considerably smaller than the right. My range of motion is no where near what it used to be, and my hip still pops quite a bit. I still get tired easily and without the cane I walk with a slight-moderate limp. Sometimes I can't support my weight very well, and honestly, that's just a little bit scary. I have fallen a couple of times.
At my post-op, more X-rays were taken to look at how my hip was healing. I hadn't gotten to see X-rays while I was in the hospital, and so it was my first time seeing what my hip looked like because of my PAO. There is a very thin, long gap from the base of the left hip, which makes a sagital cut up, almost entirely through it. The top of the cut looks fuzzy in the X-ray because the bone is healing and beginning to regenerate. There are four screws in my hips, the longest ones being 10 cm in length.
My range of motion is nowhere near where I would like it to be. Everyone keeps telling me that I will be able to dance eventually, but honestly, I can only extend my leg to about 45 degrees, as opposed to 190 degrees, which is really frustrating. I'm sure that in time I could get that range of motion back, but that's 145 degrees to make up for, and I feel my bones stopping me every time I try to increase that range of motion.
Many people keep telling me that I'm being negative in thinking I won't ever be able to dance the way I used to. And here's the thing: I'm right. Maybe I'll be able to dance phenominally again. Maybe I do get my range of motion back. But my body will never work the way that it used to. Because it's not the same anymore. It will never work the same, even if it works well. I will have to get used to everything again. I will have to retrain my body. My brain and muscles remember how to work and what to do. But after not dancing for so long, they lose their technique. They get lazy and sloppy. They forget how to work correctly. I can't help but feel that that part of my life is over. Truth is, I just don't want to get my hopes up. That way, I won't be disappointed if I'm unable to continue dancing, and I will be very pleased if I am able to. I'm not being pessimistic. I'm just being realistic. It's easier to deal with disappointment.
And here's the other thing: I understand that whatever happens is supposed to happen. Maybe I'm not supposed to keep dancing. That sentence just about kills me, but maybe it's true. About a year and a half ago, I felt very strongly that I wasn't supposed to major in dance. I felt very strongly, and received spiritual impressions that I have many other talents that I am unaware of and need to discover and develop and that the Lord has something else in mind for me. I have no idea what that something else is. Whatever it is, I'll find it. And I trust that I will find something to fill the empty space inside of me that dance used to fill.
Monday, January 7, 2013
Visiting Sam
Mom and I went to a nursing home today to visit a man named Sam. Sam is 69 and is paralyzed from the neck down because he has MS. He is a sweet man. Members of the church he is affiliated with come and visit him every Sunday, and he has family members in Aztec who visit from time to time. He has been laying in the same bed in the same nursing home for seven years come June. His wife, of whom he speaks extremely lovingly, died two years ago.
My mother met him a little while ago when she took come cub scouts to sing for various residents of the nursing home. She told me that Sam had been on her mind for a while, and that she wanted to go and see him, and asked if I would go with her. I agreed.
I have spent a lot of time in nursing homes, and am not uncomfortable there. But this time, stepping into the home was different. As I entered, the residents looked at me differently than ever before. They eyed my walker, and there was a sort of compassion that radiated from them. I had never felt that before. Before, I always felt their need to talk to me, their loneliness, and in many cases, their humor and/or wisdom. I have never felt compassion from people that I am supposed to feel compassion towards. Ever. And it was a very interesting experience for me.
Sam is a wonderful man. My mom and I only spent twenty or so minutes talking to him, but I learned a lot about him, and I felt his sweet spirit. While talking with him, I couldn't help but remember how lonely I had been my week in the hospital, and being cooped up at home for a while. And how this man has been in the same bed for six and a half years, and hasn't left. At all. And then I thought that that man must live for Sunday so that he could see and visit with and feel close to people.
I know that many people feel uncomfortable in nursing homes. It takes time. I was about seven the first time I stepped into one. But my family began volunteering there 2-3 times a week, and within a couple of weeks, I felt completely at home there. I highly recommend visiting nursing homes regularly, and bringing children along. I guarantee that it will not only bless the lives of those you visit, but your own lives. It is not difficult to take fifteen or twenty minutes a week to visit people in a nursing home. The world can be a very lonely place, and the presence of one person can make someone's day, and have a profound impact on a life.
My mother met him a little while ago when she took come cub scouts to sing for various residents of the nursing home. She told me that Sam had been on her mind for a while, and that she wanted to go and see him, and asked if I would go with her. I agreed.
I have spent a lot of time in nursing homes, and am not uncomfortable there. But this time, stepping into the home was different. As I entered, the residents looked at me differently than ever before. They eyed my walker, and there was a sort of compassion that radiated from them. I had never felt that before. Before, I always felt their need to talk to me, their loneliness, and in many cases, their humor and/or wisdom. I have never felt compassion from people that I am supposed to feel compassion towards. Ever. And it was a very interesting experience for me.
Sam is a wonderful man. My mom and I only spent twenty or so minutes talking to him, but I learned a lot about him, and I felt his sweet spirit. While talking with him, I couldn't help but remember how lonely I had been my week in the hospital, and being cooped up at home for a while. And how this man has been in the same bed for six and a half years, and hasn't left. At all. And then I thought that that man must live for Sunday so that he could see and visit with and feel close to people.
I know that many people feel uncomfortable in nursing homes. It takes time. I was about seven the first time I stepped into one. But my family began volunteering there 2-3 times a week, and within a couple of weeks, I felt completely at home there. I highly recommend visiting nursing homes regularly, and bringing children along. I guarantee that it will not only bless the lives of those you visit, but your own lives. It is not difficult to take fifteen or twenty minutes a week to visit people in a nursing home. The world can be a very lonely place, and the presence of one person can make someone's day, and have a profound impact on a life.
Saturday, January 5, 2013
People Connect Physicality to Personality
Sometimes an individual is defined by a disability, and idiosyncracy, or some little thing that is physically different about them. Before my surgery, people often walked up to me and asked "are you a dancer?" or "are you LDS?" They could see by the way I walked and talked and looked that I was either, or both, of those. People used to pass me and compliment me, or say hello to me and ask me how I was. I used to have conversations with complete strangers at the grocery store or mall or bank or wherever - and it happened all the time. That doesn't really happen anymore.
Now, instead of a conversation, I get the pitiful smile from the man who opens the door. I watch the elderly women in the table next to me at a restaurant eye my walker, wondering why I have the walker when the general way of the world dictates that they should instead. I watch the young mother pull her young children aside and listen to her say, "watch out for the lady". And I hear that roudy group of guys laugh and say, "Hey short stuff. Nice wheels", when my friends are pushing me in my wheelchair.
The initial responses don't bother me. People make fun of other people with or without their wheelchairs, pull their children away from strangers, and open the door. What bothers me is that my walker/wheelchair have become my identifying piece. People don't see my eyes or my smile. They don't see me anymore. They see the walker. Or the wheelchair.
Recently when talking to my parents I expressed such sentiments. I lifted my walker and said, "See this? This is my personality."
I know that I am far from the only person in the world who feels this way. I know plenty of people in wheelchairs. Plenty of people with walkers. Plenty of people with canes. And plenty of people with a limp quite similar to the one that accompanied my walk before surgery. And I know that all of them have felt the exact same way. Unfortunately, not all of them are as fortunate as I am. Their walkers, wheelchairs, crutches, canes and limps will always be a part of them. And those things will always define them. When people look at them, they will always see their physicality and connect it with personality.
In writing this, my intention is not to receive pity. At all. I have received an overdose of pity. In writing this, I simply hope that people will have a better understanding of this perspective, and that they won't treat individuals with defining physical features or disabilities (temporary or permanent) differently.
Here's the thing. Everyone has disabilities. Some people's are obvious, and some are hidden. But we all have them. We all have weaknesses. Some are physical. But some are emotional, mental or spiritual. Why do we define people by their "disabilities"? My personality is not "walker". I am an independent, stubborn, hard-working, determined, smart individual with enormous potential.
I am a daughter of my Heavenly Father. He has given me unique characteristics, gifts and talents. Each of us are His children. He has given each of us these talents. How much more beautiful life would be if we could look at each invidual we come in contact with and see them as a creation of Heavenly Father. We would never tell someone that they're a waste of time, or that they're useless. We would see each individual as a beautiful, wonderful, child of God who we can both serve and learn from. Because here's the thing: Heavenly Father doesn't create anything worthless. He doesn't create anything useless either. How do I know this? Because Heavenly Father is efficient. He doesn't waste time, energy or resources. So why would He create anyone who has no potential or purpose? He wouldn't. When we treat someone as if they are useless, I believe that we are, in a way, telling Heavenly Father that His creation - His child - is a waste. And that is a terrible, terrible shame.
This trial is hard. But I am thankful for it. I wouldn't have it any other way. It has put so many things into perspective for me. I believe strongly that Heavenly Father gave me hip dysplasia to teach me. I have already learned and grown tremendously, and have no doubt that as I continue to go through this, He will teach, define, perfect and bless me in countless other ways.
Now, instead of a conversation, I get the pitiful smile from the man who opens the door. I watch the elderly women in the table next to me at a restaurant eye my walker, wondering why I have the walker when the general way of the world dictates that they should instead. I watch the young mother pull her young children aside and listen to her say, "watch out for the lady". And I hear that roudy group of guys laugh and say, "Hey short stuff. Nice wheels", when my friends are pushing me in my wheelchair.
The initial responses don't bother me. People make fun of other people with or without their wheelchairs, pull their children away from strangers, and open the door. What bothers me is that my walker/wheelchair have become my identifying piece. People don't see my eyes or my smile. They don't see me anymore. They see the walker. Or the wheelchair.
Recently when talking to my parents I expressed such sentiments. I lifted my walker and said, "See this? This is my personality."
I know that I am far from the only person in the world who feels this way. I know plenty of people in wheelchairs. Plenty of people with walkers. Plenty of people with canes. And plenty of people with a limp quite similar to the one that accompanied my walk before surgery. And I know that all of them have felt the exact same way. Unfortunately, not all of them are as fortunate as I am. Their walkers, wheelchairs, crutches, canes and limps will always be a part of them. And those things will always define them. When people look at them, they will always see their physicality and connect it with personality.
In writing this, my intention is not to receive pity. At all. I have received an overdose of pity. In writing this, I simply hope that people will have a better understanding of this perspective, and that they won't treat individuals with defining physical features or disabilities (temporary or permanent) differently.
Here's the thing. Everyone has disabilities. Some people's are obvious, and some are hidden. But we all have them. We all have weaknesses. Some are physical. But some are emotional, mental or spiritual. Why do we define people by their "disabilities"? My personality is not "walker". I am an independent, stubborn, hard-working, determined, smart individual with enormous potential.
I am a daughter of my Heavenly Father. He has given me unique characteristics, gifts and talents. Each of us are His children. He has given each of us these talents. How much more beautiful life would be if we could look at each invidual we come in contact with and see them as a creation of Heavenly Father. We would never tell someone that they're a waste of time, or that they're useless. We would see each individual as a beautiful, wonderful, child of God who we can both serve and learn from. Because here's the thing: Heavenly Father doesn't create anything worthless. He doesn't create anything useless either. How do I know this? Because Heavenly Father is efficient. He doesn't waste time, energy or resources. So why would He create anyone who has no potential or purpose? He wouldn't. When we treat someone as if they are useless, I believe that we are, in a way, telling Heavenly Father that His creation - His child - is a waste. And that is a terrible, terrible shame.
This trial is hard. But I am thankful for it. I wouldn't have it any other way. It has put so many things into perspective for me. I believe strongly that Heavenly Father gave me hip dysplasia to teach me. I have already learned and grown tremendously, and have no doubt that as I continue to go through this, He will teach, define, perfect and bless me in countless other ways.
Tuesday, January 1, 2013
Two Weeks Down
Well, my PAO (periacetabular osteotomy) was two weeks ago today. I am still in a pretty large amount of pain. Honestly, the pain hasn't decreased all that much since surgery...well, it probably has, since I had an IV, narcotics and an epidural. I just haven't noticed. It's amazing what kinds of things you take for granted until you find yourself using a walker and wheelchair.
Two weeks after my surgery, I find myself able to put on all flats without help, which is, for me, kind of a big deal! I can finally put my shoes on by myself!! I also took my first shower in two weeks. May I just say that it was much better than sponge baths and my parents washing my hair for me in the sink. I was finally really clean! I have to sit on one of those shower benches, and it's kind of difficult, but I can do it! On a good day, I can get out of bed by myself and I can walk longer distances. Unless I'm having a really bad day, I can (finally) bend my left leg 90 degrees when I'm sitting in bed.
I can't get into bed by myself yet. I sit on the edge of my bed, and a member of my family picks up my leg by my ankle and just below my knee and slowly brings it to my bed. I help rotate myself by gently pushing off with my good leg.
Feeding myself is hard. Correction. I can pick up a fork, slide food onto it and put it into my mouth without a problem (except that all the medications make me lose my apetite.) Getting anything out of the fridge or cupboards is hard, because I'm supposed to use a walker around the house and so I have no free hands. This means that I also can't put my dishes in the sink or dishwasher. The only way I can get food for myself is if I can carry it to the table in my mouth. for example, I bite the end of a bag of tostada shells or cereal or an apple and carry it to the table in my mouth. It's annoying. My family takes care of me pretty well though.
Dressing myself is still not possible. I can put on shirts and dresses and what not, but any bottoms my mom has to help me put on. I'm getting used to the whole no privacy thing. I also can't put socks on.
I still get tired really easily. I curled my hair, and before I was finished was completely exhausted. Thankfully my mom finished my hair for me. And not to get all personal and awkward of anything, but I can't shave my legs, so my mom has do that for me. My poor mother.
Getting in and out of vehicles is one of my least favorite things in the world. Actually, I really hate it. I can finally sit normally in the vehicle, but I feel really bad because I take the front seat from my mom in our Chevy. In our F150, I can sit in the back. Regardless, Dad has to lift me into the car, set me on the seat, and then slide my legs in.
One of the worst things is that I am tired of being cooped up in the house. I would love to go someplace. I'm so used to being busy all the time, and being cooped up in the house (and in the same bed/chair most of the day) is frustrating. I feel really unproductive, and even though I'll be spending the first month in a wheelchair, I can't wait for the next semester! It's time to learn and be busy again.
The thing I want more than anything is to be able to sleep on my side. I almost cry just thinking about it. I have to sleep the way a person would if they were sitting in a reclining chair. It doesn't produce much sleep. I miss laying on my side so so much. I tried to do it the other day - even to lay on the good side. But my "wounded" hip is no longer strong enough to stay up.
It's amazing what we take for granted: being able to get in and out of bed or a vehicle, put our shoes or socks on, get a box of cereal out of the cupboard, walk, dance, bend our knees, sleep on our side and so on.
Two weeks after my surgery, I find myself able to put on all flats without help, which is, for me, kind of a big deal! I can finally put my shoes on by myself!! I also took my first shower in two weeks. May I just say that it was much better than sponge baths and my parents washing my hair for me in the sink. I was finally really clean! I have to sit on one of those shower benches, and it's kind of difficult, but I can do it! On a good day, I can get out of bed by myself and I can walk longer distances. Unless I'm having a really bad day, I can (finally) bend my left leg 90 degrees when I'm sitting in bed.
I can't get into bed by myself yet. I sit on the edge of my bed, and a member of my family picks up my leg by my ankle and just below my knee and slowly brings it to my bed. I help rotate myself by gently pushing off with my good leg.
Feeding myself is hard. Correction. I can pick up a fork, slide food onto it and put it into my mouth without a problem (except that all the medications make me lose my apetite.) Getting anything out of the fridge or cupboards is hard, because I'm supposed to use a walker around the house and so I have no free hands. This means that I also can't put my dishes in the sink or dishwasher. The only way I can get food for myself is if I can carry it to the table in my mouth. for example, I bite the end of a bag of tostada shells or cereal or an apple and carry it to the table in my mouth. It's annoying. My family takes care of me pretty well though.
Dressing myself is still not possible. I can put on shirts and dresses and what not, but any bottoms my mom has to help me put on. I'm getting used to the whole no privacy thing. I also can't put socks on.
I still get tired really easily. I curled my hair, and before I was finished was completely exhausted. Thankfully my mom finished my hair for me. And not to get all personal and awkward of anything, but I can't shave my legs, so my mom has do that for me. My poor mother.
Getting in and out of vehicles is one of my least favorite things in the world. Actually, I really hate it. I can finally sit normally in the vehicle, but I feel really bad because I take the front seat from my mom in our Chevy. In our F150, I can sit in the back. Regardless, Dad has to lift me into the car, set me on the seat, and then slide my legs in.
One of the worst things is that I am tired of being cooped up in the house. I would love to go someplace. I'm so used to being busy all the time, and being cooped up in the house (and in the same bed/chair most of the day) is frustrating. I feel really unproductive, and even though I'll be spending the first month in a wheelchair, I can't wait for the next semester! It's time to learn and be busy again.
The thing I want more than anything is to be able to sleep on my side. I almost cry just thinking about it. I have to sleep the way a person would if they were sitting in a reclining chair. It doesn't produce much sleep. I miss laying on my side so so much. I tried to do it the other day - even to lay on the good side. But my "wounded" hip is no longer strong enough to stay up.
It's amazing what we take for granted: being able to get in and out of bed or a vehicle, put our shoes or socks on, get a box of cereal out of the cupboard, walk, dance, bend our knees, sleep on our side and so on.
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