I was warned that I might have some oddly-detailed dreams while taking my new anti-shake medicine (propanolol). I shrugged off the advice, because I figured it all came down to what you wanted your mind to do. Some of those side effects I've heard of in the past were off-the-wall, and I always thought a bit of mind-power can make everything calm down.
Was. I. Wrong.
The first night I took the medicine, I will report that I haven't slept that well in a while! I am not sure if it just made me sleepy, or it calmed down my body. The internal tremor has been getting old, and that's bugged me in the nighttime. I will admit that I had never really woken up in the night and noted symptoms on a chart...
Well, I woke up the next morning and laughed about the idea that I could have strange dreams. I guess I finally gave my mind permission to relax, because the next night was a doozy. My home was being attacked by various arachnids, but they were always lined up in straight lines. They never moved while I was watching them, but their positions often changed. That was probably what scared me more than anything about the dream- I KNEW they were moving, but couldn't prove it. And no one believed me... I am sure the Freudians would probably read something into that detail.
The next night was another detailed dream, where Asian terrorists were attempting to hijack an airlines by smuggling in mangoes that carried explosives. Yes, you read that correctly. I got caught up in the whole deal because I was going to meet someone at Gate O, and someone handed me a mango. Always the wrong place at the wrong time...
There were more, but really until this morning I didn't think of writing them down. Now I think I am going to keep a dream diary, because I'll be sad I didn't record them if I ever go off this medicine. If anything, it provides a little comic relief.
This weekend I was a lot more tired than usual, and a bit shakier as well. I've found there's a strong correlation between the two, but it's funny considering I slept in both mornings.
We took the kids to The Lego Movie, and they were beyond excited. I would have much rather stayed in bed and rested for the day, but I often feel bad when the kids are punished by my illness. So, we headed to the theater, and everyone was enjoying themselves.
Stupid Injury #1 happened in the bathroom. I was trying to maneuver the lock on the handicapped stall, and my hand wasn't coordinated and cooperating. Long story short, Carly watched in horror as I ripped the skin off the top of my hand. It immediately swelled up with a big lump under the skin, turned purple, and started gushing blood. She let out an awesome scream, and the other lady in the bathroom was rather concerned. No sounds came out of my mouth; I just walked out of the stall with big eyes. The manager gave me a band-aid, and I headed back to the movie.
We made it to ice cream after the movie, and ran an errand. Everything was wrapped up for the weekend, and I was feeling prepared to start the week. Enter Stupid Injuries #2 and #3...
Stupid Injury #2 happened while attempting to clean up the bonus room. While picking up remotes, I managed to drop one on the exactly wrong spot on my foot. Now, I am not trying to whine, merely pointing out that the most ridiculous things have been happening. I let out a strange noise and sat down quickly. Carly was in there, and she gave me a puzzled look. 'you doing ok, mom???"
I told her my hands aren't cooperating today, so I was planning on taking it easy for the rest of the night. Alex commented that he was ready for his movie before bed, but wanted me to cut the tag off his new stuffed Chihuahua. Enter Stupid Injury #3...
Yep, you can probably already imagine what happened there. I am guessing that maybe using scissors (even kid ones) isn't a good plan when I am tired anymore, because tired = shaky. I sliced through part of my finger, and the blood started gushing. He looked at me and said "maybe you should just go to bed?"
I told him I give up, and tomorrow's another day... I tried to laugh and kissed him, but the thought occurred to me that maybe I should reevaluate some of the daily activities I've been doing. I really don't want to get another really serious injury from the shakiness and lack of balance. The bone is FINALLY healing from the fracture four months ago. I really don't need Round #2.
This week will be a busy one in my medical life. I go to physical therapy to work on my balance and range of motion, then head to the Hematologist on Tuesday to get the results of my clotting tests (and some advice on how to proceed with a lot of things). Friday (my favorite appt) I get to go to the orthopedic surgeon so he can inject medication directly INTO my knee. Because nothing says Valentine's Day like needles and medications...
I try to remain hopeful that life will work itself out, but sometimes it can be frustrating. I am glad I am moving in the right direction, but it can be disheartening to encounter activities in my daily life that are now a challenge. I am a person that likes the freedom of doing anything she pleases, and of holding her own. The last thing I want to admit is that I can't do everything I want to do anymore. I am happy to hear how many people have offered help, or have told me that we will deal with whatever happens as time goes on. But I guess this mental transition in my head of putting a lot more effort into looking normal- THAT'S what is bugging me more than anything. When you balance enough plates in the air, eventually they all come crashing down.
A goal for this week is looking into the voice-assisted technology program, like Dragon Naturally Speaking. I love writing, and I especially like documenting this journey. It makes me sad to fix these passages over and over again, and see that my once-lightning-speed typing is now at least half speed. Still faster than those that have to hunt and peck, but not what I once was. I am hoping the idea of transcribing will keep the ideas flowing without the frustration of having to type. Expect much longer passages at that point... :-)
Showing posts with label propanolol. Show all posts
Showing posts with label propanolol. Show all posts
Sunday, February 9, 2014
Wednesday, February 5, 2014
A Step in the Right Direction
Last week I finally heard back from my new neurologist. I had already seen the hematologist about the blood clotting issues, but had been waiting on the referral to the new neurologist. I got the call, and nurse told me "right now, we are looking at 9:30am... on May 29th..."
My heart sank.
I knew that there are tons of people out there that have issues, but I also wanted to make a plan so I could get my life back on track. I told her that would be fine, but asked if I could be on a cancellation list. She told me that was fine, and I will hopefully hear something a lot sooner than May.
On Monday morning, I was home with Alex. I had cancelled my physical therapy appointment because he wasn't feeling good, and we were about to take a rest. I got a phone call from the nurse, asking me if I could make it to the neurologist on THAT DAY at 1:30, since she'd had some cancellations.
YES!!!
I told her I'd make it work, and would have to bring a kid with me. I was SOOOO excited, even if that didn't leave me time for a shower. I never like to go in public "undone," let alone meet a new doctor that I have to convince I am not crazy. I did my hair and slapped on some makeup, and we headed out the door.
I was having trouble over the past week, where even when I went to sleep at night I could watch my body spasm and twitch about. Sleep had gotten interesting, and I really just wanted some relief. While I surely didn't think I had a ticking time bomb sort of issue, I was about to lose my mind!
I arrived at the doctor, and filled out fifty seven pages of medical history. I pretty much told them everything that every happened in my life, which has been a challenge to write since my handwriting has gotten funky. I remember thinking to myself "I need to type all of this so I can just hand them a copy, and make multiple copies of that." I also remember thinking I would look really cool handing a booklet to my doctor. Hypochondriac anyone?
But once you've had cancer, they kinda expect you to give tons of info. And if you don't, they ask you TONS of questions anyway. So, I am thinking the booklet might be a good plan.
The nurse was incredibly friendly, and told me Alex was fine to sit with me. I could tell he was nervous, because he opened his water to drink it and spilled it all over the floor. Without missing a beat, she handed him a few paper towels, and told him it was only water. I appreciated that she did her best to make him feel at ease.
I was a bit nervous, meeting a new doctor and all. I was also nervous to talk to the doctor in front of Alex, because I don't want him worrying about me. The good thing about Alex, is he has the ability to hyperfocus. It can be really bad when you are trying to get his attention, but it was fantastic when I was conversing with the doctor. She even giggled when he made motor noises while playing his game, because he was completely oblivious to her in the room and our serious conversation.
The doctor: when she walked in, I was a little nervous. She looked nice, but she also looked extremely professional. I had thought back to all of my doctors I've seen, and I have had some doozies. Unfortunately, that makes me a bit skiddish when meeting new docs. I just didn't want her to think I was crazy, because I was tired of my issues being belittled. The truth I have learned is that if I am a male with the exact same issues, I would be taken seriously. Because I am female, sometimes they play the "hysteria" card, and blame it on hormones or mental illness. It's a sad world in health care when doctors play this game. They threw that crap on me the week before I found out I had cancer. One minute I am just crazy; the next minute they are telling me I have cancer, and apologizing. Nice...
So, I answered her questions, but I didn't want to divulge too much info yet. I didn't want to run her off. She seemed nice enough, and she was really thorough. She started with the hospital event in December, and went over that info with me. She made a plan for the stroke care, since she said it was probably a Transient Ischemic Attack. It sounds like the same thing that happened in 2009, and she was glad the hematologist was looking into the cause. With infertility issues that may have stemmed from this clotting problem, and the TIAs, she decided that I needed to remain on long-term aspirin therapy, and look at minimizing other stroke risk factors. Fair enough. We talked about those, and got a plan squared away.
I was already beginning to love her, because she was actively making a plan. I had concerns, and she was validating them and making a plan! No finger-pointing or whining! Just matter-of-factly telling me what we had to do, then asking me if I thought that was a reasonable plan. Then she moved on to the other issue...
I was really nervous to talk to her about the tremors, I guess because I get emotional about them. I really didn't want to cry in front of the doctor, but it happens when I have to tell her how embarrassing this has become, and how it has affected my personal and work life. I could already feel the tears well up as she started asking me one hundred questions. When I started telling her how I shake when I write, when I type, when I put on makeup, that's when I started to cry. I realized that everything I do to get ready, to be productive, to be a human being, is now affected. I told her how even when I sit and watch tv at night, I feel the twitching and spasms, and see parts flop about.
She told me it sounded like I had rest tremors and tremors with activity. I agreed, and told her that has been what confused me. I seem to overlap with the Essential Tremor and Parkinson's Disease diagnoses, and that confused me. I explained all of the family members that had both ET and PD, and told her that essentially there was a "whole lotta shakin' goin' on." She really appreciated that comment, and her giggle lightened the mood quite a bit.
She asked me "why on earth has no one tried medicines for the tremors?" I told her how people observed them, but either shrugged them off as anxiety or told me I was crazy. I know I've had stress in the past, but this has gone on for too long, and it's gotten a lot worse! She told me that wasn't a very smart plan, and she wants to start me on meds right away. The only way to know if they will work is to try them, but she wants to start me on the most conservative (and cheapest!) drug first. She wants there to be benefit, but not at the expense of side effects, or building up a tolerance to meds early in the treatment phase. She told me that meds should help me function easier, and that I can work on exercises to build up my strength and balance, until those start giving me more trouble. Essentially, she let me know that all of this will progress, but a proactive approach will help me function independently for longer. I liked the sound of that.
She also wanted ALL of my records from all the other doctors, because she wanted to sort through everything and see what they were searching for. With the swallowing issues that required esophageal stretching at the Mayo Clinic, she wants to make sure that wasn't related to the swallowing problems of PD. The balance issues that have caused broken bones and injury sound like they've been linked to it as well. I had to wonder what would have happened if I had met her five years ago instead of the other twenty doctors. I guess we can't go back, and it's really worthless to think about all of that. I'm just glad I've found her now.
So, I started on propanolol, and I went ahead and started a more aggressive dose. This is used to lessen the tremors, and decrease the anxious reaction they are causing. It's actually a beta blocker used for people with heart issues. She said it was a good first choice because it didn't have a lot of side effects, and it was cheap. I just have to be careful of standing up too quickly- sometimes the blood pressure can take a dive, and people pass out. I think I can remember that if it means making a difference in my daily routine! She said I could feel results fairly quickly, but to give it a week or two to really gauge its effectiveness. She asked me if it was reasonable to meet back in two months to see how the treatment is working, and for me to promise I will get an opthalmology evaluation and talk to my sleep dr again. PD has sleep problems associated with it, and she wants to make sure we are all on the same page. I hadn't been to the eye dr in a while, but have had some vision issues associated with both the TIA and my daily life. My left vision has been blurry off and on, and she said that very well could be creating that nausea feeling, and the headaches I sometimes get. She wants to make sure everything is intact from that perspective, and I am grateful that she's on the ball.
So, after getting back into Tullahoma, I stopped by and picked up my new meds. I was a bit leery that a drug costing $4.25 a month could be the answer to my worries, but I gave it a shot. I took a pill and went about my evening routine. I really didn't expect much of anything to happen.
I did feel a bit more relaxed about life. Honestly, I didn't give a flip what happened that evening, which was kinda nice. I didn't feel drugged or anything, but it seemed like things moved slower. It wasn't half bad. I couldn't tell if the tremors were less, or if I just didn't care... LOL
I headed to bed at a reasonable hour, and woke up at almost 7am!! WHAT??? I had slept almost 10 hours and didn't wake up! That NEVER happens. Ok, I did remember waking up briefly one time in the night, because I was having really odd dreams. On Tuesday morning, I did a little research and found out that was one of the commonly reported side effects (vivid and sometimes strange dreams).
Day 2 was pretty decent, but I found myself sleeping quite a bit during the day. That was a little strange since I had slept so long the night before, but I was wondering if I was finally catching up on sleep. Tuesday night, I was asleep by 9pm. What time did I wake up Wednesday? 7AM!!! ANOTHER 10 HOUR NIGHT!!!
Of course, I woke up once or twice from strange dreams again- nothing scary, just very realistic and odd. I can't remember them now, but they were worth waking up for. Today I had to go meet someone for lunch, and I was a bit nervous. This was the first social opportunity since starting the medicine, and it gave me an opportunity to see the meds in action. I've been getting anxious because I don't want to look odd in public, which I am sure makes everything worse. Well, the thing that makes it worse is when people point it out (which happens EVERY DAY). I really didn't want to look out of place, and I practiced my hand-holding I do to make it look like I am thoughtful instead of shaky...
I took half a dose earlier in the day, and the other half an hour before lunch. I wondered if the dose was what made me sleepy the day before, and I didn't want to risk that with the driving to Murfreesboro. So, I figured the split would lessen the blow of the meds.
I am happy to report that lunch went well! Either I didn't care about the shaking, or it really did help! Or, my lunch mate was just too polite to ask... LOL It was nice to be out and be social, even if it did mean I had to sit and worry about this issue for two hours. At least I was getting out there and living life! And because I am like Garfield and love me some lasagna, that's what really pushed me to go... ;-)
We'll see what happens over the next few weeks. I meet with the hematologist next week to come up with a plan for my blood, and I go back to see my orthopedic surgeon to address my healing of my knee. I am supposed to start back to work the week after that, if I am about to get a handle on my health. I want to balance a medication that makes me safe and productive, with the ability to be productive at work and do what needs to be done. The reality is that teaching special education requires 150% alertness and physical function, and that's what is making me apprehensive right now. When I take a med to increase my physical ability, I am sacrificing alertness. At some point, I need to make a decision about what's best for me and my career. Unfortunately, I've always been the provider and never got to worry first about my health and comfort. Right now, as a single parent and provider, I am trying to be thoughtful in balancing my well-being with the well-being of my children. Pray for me on that aspect.
What I'm really hoping for is some time to make a plan. The whole reason I created this blog was as an extension of my project I did for turning 30. I still had goals that I wanted to complete by 40, and I guess I've been lax in making a plan about getting anything done. Maybe the best part about facing my new reality is knowing if I want to reach those goals, I need to plan on sooner rather than later. That's probably true for all of us, so I guess it's a good thing to realize now. :-)
My heart sank.
I knew that there are tons of people out there that have issues, but I also wanted to make a plan so I could get my life back on track. I told her that would be fine, but asked if I could be on a cancellation list. She told me that was fine, and I will hopefully hear something a lot sooner than May.
On Monday morning, I was home with Alex. I had cancelled my physical therapy appointment because he wasn't feeling good, and we were about to take a rest. I got a phone call from the nurse, asking me if I could make it to the neurologist on THAT DAY at 1:30, since she'd had some cancellations.
YES!!!
I told her I'd make it work, and would have to bring a kid with me. I was SOOOO excited, even if that didn't leave me time for a shower. I never like to go in public "undone," let alone meet a new doctor that I have to convince I am not crazy. I did my hair and slapped on some makeup, and we headed out the door.
I was having trouble over the past week, where even when I went to sleep at night I could watch my body spasm and twitch about. Sleep had gotten interesting, and I really just wanted some relief. While I surely didn't think I had a ticking time bomb sort of issue, I was about to lose my mind!
I arrived at the doctor, and filled out fifty seven pages of medical history. I pretty much told them everything that every happened in my life, which has been a challenge to write since my handwriting has gotten funky. I remember thinking to myself "I need to type all of this so I can just hand them a copy, and make multiple copies of that." I also remember thinking I would look really cool handing a booklet to my doctor. Hypochondriac anyone?
But once you've had cancer, they kinda expect you to give tons of info. And if you don't, they ask you TONS of questions anyway. So, I am thinking the booklet might be a good plan.
The nurse was incredibly friendly, and told me Alex was fine to sit with me. I could tell he was nervous, because he opened his water to drink it and spilled it all over the floor. Without missing a beat, she handed him a few paper towels, and told him it was only water. I appreciated that she did her best to make him feel at ease.
I was a bit nervous, meeting a new doctor and all. I was also nervous to talk to the doctor in front of Alex, because I don't want him worrying about me. The good thing about Alex, is he has the ability to hyperfocus. It can be really bad when you are trying to get his attention, but it was fantastic when I was conversing with the doctor. She even giggled when he made motor noises while playing his game, because he was completely oblivious to her in the room and our serious conversation.
The doctor: when she walked in, I was a little nervous. She looked nice, but she also looked extremely professional. I had thought back to all of my doctors I've seen, and I have had some doozies. Unfortunately, that makes me a bit skiddish when meeting new docs. I just didn't want her to think I was crazy, because I was tired of my issues being belittled. The truth I have learned is that if I am a male with the exact same issues, I would be taken seriously. Because I am female, sometimes they play the "hysteria" card, and blame it on hormones or mental illness. It's a sad world in health care when doctors play this game. They threw that crap on me the week before I found out I had cancer. One minute I am just crazy; the next minute they are telling me I have cancer, and apologizing. Nice...
So, I answered her questions, but I didn't want to divulge too much info yet. I didn't want to run her off. She seemed nice enough, and she was really thorough. She started with the hospital event in December, and went over that info with me. She made a plan for the stroke care, since she said it was probably a Transient Ischemic Attack. It sounds like the same thing that happened in 2009, and she was glad the hematologist was looking into the cause. With infertility issues that may have stemmed from this clotting problem, and the TIAs, she decided that I needed to remain on long-term aspirin therapy, and look at minimizing other stroke risk factors. Fair enough. We talked about those, and got a plan squared away.
I was already beginning to love her, because she was actively making a plan. I had concerns, and she was validating them and making a plan! No finger-pointing or whining! Just matter-of-factly telling me what we had to do, then asking me if I thought that was a reasonable plan. Then she moved on to the other issue...
I was really nervous to talk to her about the tremors, I guess because I get emotional about them. I really didn't want to cry in front of the doctor, but it happens when I have to tell her how embarrassing this has become, and how it has affected my personal and work life. I could already feel the tears well up as she started asking me one hundred questions. When I started telling her how I shake when I write, when I type, when I put on makeup, that's when I started to cry. I realized that everything I do to get ready, to be productive, to be a human being, is now affected. I told her how even when I sit and watch tv at night, I feel the twitching and spasms, and see parts flop about.
She told me it sounded like I had rest tremors and tremors with activity. I agreed, and told her that has been what confused me. I seem to overlap with the Essential Tremor and Parkinson's Disease diagnoses, and that confused me. I explained all of the family members that had both ET and PD, and told her that essentially there was a "whole lotta shakin' goin' on." She really appreciated that comment, and her giggle lightened the mood quite a bit.
She asked me "why on earth has no one tried medicines for the tremors?" I told her how people observed them, but either shrugged them off as anxiety or told me I was crazy. I know I've had stress in the past, but this has gone on for too long, and it's gotten a lot worse! She told me that wasn't a very smart plan, and she wants to start me on meds right away. The only way to know if they will work is to try them, but she wants to start me on the most conservative (and cheapest!) drug first. She wants there to be benefit, but not at the expense of side effects, or building up a tolerance to meds early in the treatment phase. She told me that meds should help me function easier, and that I can work on exercises to build up my strength and balance, until those start giving me more trouble. Essentially, she let me know that all of this will progress, but a proactive approach will help me function independently for longer. I liked the sound of that.
She also wanted ALL of my records from all the other doctors, because she wanted to sort through everything and see what they were searching for. With the swallowing issues that required esophageal stretching at the Mayo Clinic, she wants to make sure that wasn't related to the swallowing problems of PD. The balance issues that have caused broken bones and injury sound like they've been linked to it as well. I had to wonder what would have happened if I had met her five years ago instead of the other twenty doctors. I guess we can't go back, and it's really worthless to think about all of that. I'm just glad I've found her now.
So, I started on propanolol, and I went ahead and started a more aggressive dose. This is used to lessen the tremors, and decrease the anxious reaction they are causing. It's actually a beta blocker used for people with heart issues. She said it was a good first choice because it didn't have a lot of side effects, and it was cheap. I just have to be careful of standing up too quickly- sometimes the blood pressure can take a dive, and people pass out. I think I can remember that if it means making a difference in my daily routine! She said I could feel results fairly quickly, but to give it a week or two to really gauge its effectiveness. She asked me if it was reasonable to meet back in two months to see how the treatment is working, and for me to promise I will get an opthalmology evaluation and talk to my sleep dr again. PD has sleep problems associated with it, and she wants to make sure we are all on the same page. I hadn't been to the eye dr in a while, but have had some vision issues associated with both the TIA and my daily life. My left vision has been blurry off and on, and she said that very well could be creating that nausea feeling, and the headaches I sometimes get. She wants to make sure everything is intact from that perspective, and I am grateful that she's on the ball.
So, after getting back into Tullahoma, I stopped by and picked up my new meds. I was a bit leery that a drug costing $4.25 a month could be the answer to my worries, but I gave it a shot. I took a pill and went about my evening routine. I really didn't expect much of anything to happen.
I did feel a bit more relaxed about life. Honestly, I didn't give a flip what happened that evening, which was kinda nice. I didn't feel drugged or anything, but it seemed like things moved slower. It wasn't half bad. I couldn't tell if the tremors were less, or if I just didn't care... LOL
I headed to bed at a reasonable hour, and woke up at almost 7am!! WHAT??? I had slept almost 10 hours and didn't wake up! That NEVER happens. Ok, I did remember waking up briefly one time in the night, because I was having really odd dreams. On Tuesday morning, I did a little research and found out that was one of the commonly reported side effects (vivid and sometimes strange dreams).
Day 2 was pretty decent, but I found myself sleeping quite a bit during the day. That was a little strange since I had slept so long the night before, but I was wondering if I was finally catching up on sleep. Tuesday night, I was asleep by 9pm. What time did I wake up Wednesday? 7AM!!! ANOTHER 10 HOUR NIGHT!!!
Of course, I woke up once or twice from strange dreams again- nothing scary, just very realistic and odd. I can't remember them now, but they were worth waking up for. Today I had to go meet someone for lunch, and I was a bit nervous. This was the first social opportunity since starting the medicine, and it gave me an opportunity to see the meds in action. I've been getting anxious because I don't want to look odd in public, which I am sure makes everything worse. Well, the thing that makes it worse is when people point it out (which happens EVERY DAY). I really didn't want to look out of place, and I practiced my hand-holding I do to make it look like I am thoughtful instead of shaky...
I took half a dose earlier in the day, and the other half an hour before lunch. I wondered if the dose was what made me sleepy the day before, and I didn't want to risk that with the driving to Murfreesboro. So, I figured the split would lessen the blow of the meds.
I am happy to report that lunch went well! Either I didn't care about the shaking, or it really did help! Or, my lunch mate was just too polite to ask... LOL It was nice to be out and be social, even if it did mean I had to sit and worry about this issue for two hours. At least I was getting out there and living life! And because I am like Garfield and love me some lasagna, that's what really pushed me to go... ;-)
We'll see what happens over the next few weeks. I meet with the hematologist next week to come up with a plan for my blood, and I go back to see my orthopedic surgeon to address my healing of my knee. I am supposed to start back to work the week after that, if I am about to get a handle on my health. I want to balance a medication that makes me safe and productive, with the ability to be productive at work and do what needs to be done. The reality is that teaching special education requires 150% alertness and physical function, and that's what is making me apprehensive right now. When I take a med to increase my physical ability, I am sacrificing alertness. At some point, I need to make a decision about what's best for me and my career. Unfortunately, I've always been the provider and never got to worry first about my health and comfort. Right now, as a single parent and provider, I am trying to be thoughtful in balancing my well-being with the well-being of my children. Pray for me on that aspect.
What I'm really hoping for is some time to make a plan. The whole reason I created this blog was as an extension of my project I did for turning 30. I still had goals that I wanted to complete by 40, and I guess I've been lax in making a plan about getting anything done. Maybe the best part about facing my new reality is knowing if I want to reach those goals, I need to plan on sooner rather than later. That's probably true for all of us, so I guess it's a good thing to realize now. :-)
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