Day 7, Saturday
10:30 am - 3:00 pm Once again, I allowed myself to sleep in and felt extremely confused upon waking. Following coffee, meds, and some reading material, the fog lifted from my mind rather suddenly and I was able to begin working. I truly intended to go into work to complete some projects before I officially return to work on Monday but my good intentions rarely work out. I did manage to weed through a week's worth of email and to compile the monthly stats before focusing on my lectures once again.
Several FGS emails came through my work, yahoo, and gmail accounts requiring my attention. Unfortunately, several of them involved access to a calendar that still eludes me. Once again, I dedicated time to my FGS lectures and listened to the FGS radio show, which I'm supposed to be co-producing. Anyone have any ideas on topics and guests?
3:00 pm - 7:00 pm My mother always frenetically cleans the house before a holiday and though we never plan anything for Easter, I always complete my spring cleaning on Easter weekend. Since I lost the wrestling match with the trash can lid and broke my elbow three Easters ago, James has been willing to help out with this annual tradition. Hours of moving furniture, scrubbing and cleaning, and moving the furniture back into place gave us plenty of time to converse.
Recently, I've been in a vulnerable state of mind which is aggravated by the ghosts of my past. Though I don't dwell on the past, I don't deny it has fully shaped my life and relationships. Part of the reason James and I are so good together is because he understands my baggage as he suffers from his own scars. In the past few weeks, some conversations have reminded me of why I'm such a cynic but have also let my ghosts out of their box.
Even with all my baggage, I have few regrets because I feel each event has made me a better person. But ending my friendship with August is one of my biggest regrets and began my painful journey through so-called acquaintances. August's wife, Christy, taught me my first lesson that insecurities can decimate a nine year friendship. After this, I had no friends until John took me under his wing. Two years later, Jason swept in as my knight and offered me friendship. I never discuss Jason but his name was mentioned recently and it triggered an avalanche of emotions. I'm not sure of Jason's true motivations nor do I care, because in the end, I suffered a harsh lesson. Jason left me feeling ashamed, humiliated, and distrustful. It was several years later, before I stepped outside my walls to accept Mich as my friend.
When talking, James reminded me of how much I've changed since then and the relationships that I've built. He said all the right things to make me analyze and shut away the ghosts. There are times when he shocks me with his insight. After the heart-to-heart while cleaning, I felt relieved.
7:00 pm - 12:00 am Since the university remains open for their foreign students, James works Easter, which meant our holiday dinner took place on Saturday evening. I know it will shock some of you, but yes, I made a dinner of onion chicken. Not a store-bought, reheated dinner, but from scratch. And with strawberries on sale, I had to serve strawberry shortcake though it is out-of-season in our minds. In Florida, we used to celebrate the strawberry festival in late February so March feels weird, but it was yummy. James desperately wanted to see the new Bond move, Skyfall, which was a disaapointment to us both. We ended the evening with me showing him the keynote from David Pogue that I thought was hilarious.
Now that my vacation is over, I can return to the everyday grind at work and my normal routine.
Sunday, March 31, 2013
Saturday, March 30, 2013
Our Normal
Day 6, Friday
9:00 am - 1:00 pm Upon waking, I felt more confused than usual. Finishing my final cup of coffee, I read and hoped the fog that hovered over my thoughts would lift. It is fascinating how one minute, my mind was muddled and the next minute, a curtain lifted and I felt normal.
Calling Dr. S's office, I was frustrated to discover that they were closed for the holiday. I had been waiting on paperwork from his office which I would now need to pick up on my evening shift. I had completely forgotten that it was Good Friday.
1:00 pm - 2:00 pm I have an appointment with my torturer, Steve, every other Friday. Steve has kindly informed me that my skin is a culmination of the perfect storm. Due to a multitude of issues, I use different creams and lotions to help my skin tone.
On this visit, Steve and I needed to discuss a change in our routine because I had a treatment the night before I flew to SLC, which resulted in three serious burns. I've had periodic burns but not to this extent. We came up with a new plan of attack which I hope will help improve the skin issues.
2:00 pm - 4:00 pm James called to say he was trapped on I-69 due to an overturned semi which is becoming a regular situation. When he finally got home, we headed out to the store. Grocery shopping is a routine from our dating days. James lived the next county over but worked at USF and would insist on shopping with me so he could carry my groceries to my apartment which was poorly situated at the time. A decade later, he refuses to allow me to carry the groceries.
4:00 pm - 1:00 am The weather was too beautiful to pass up. We took Bartle for a walk before sitting outside and relaxing for a while. Eventually, I napped while James worked out and made dinner. Our evening was pretty uneventful, with the exception of me cheering for Michigan during the Sweet Sixteen game followed by the Florida game. These two games lead to a Michigan vs. Florida match in the Elite Eight on Sunday. Since I could only monitor the game via the internet, we watched Supernatural (our shared show) and Arrow (James makes fun that I watch this show based on the comic). I stayed awake to see the end of the game and crashed to sleep. The insomnia seems to be at an end.
9:00 am - 1:00 pm Upon waking, I felt more confused than usual. Finishing my final cup of coffee, I read and hoped the fog that hovered over my thoughts would lift. It is fascinating how one minute, my mind was muddled and the next minute, a curtain lifted and I felt normal.
Calling Dr. S's office, I was frustrated to discover that they were closed for the holiday. I had been waiting on paperwork from his office which I would now need to pick up on my evening shift. I had completely forgotten that it was Good Friday.
1:00 pm - 2:00 pm I have an appointment with my torturer, Steve, every other Friday. Steve has kindly informed me that my skin is a culmination of the perfect storm. Due to a multitude of issues, I use different creams and lotions to help my skin tone.
On this visit, Steve and I needed to discuss a change in our routine because I had a treatment the night before I flew to SLC, which resulted in three serious burns. I've had periodic burns but not to this extent. We came up with a new plan of attack which I hope will help improve the skin issues.
2:00 pm - 4:00 pm James called to say he was trapped on I-69 due to an overturned semi which is becoming a regular situation. When he finally got home, we headed out to the store. Grocery shopping is a routine from our dating days. James lived the next county over but worked at USF and would insist on shopping with me so he could carry my groceries to my apartment which was poorly situated at the time. A decade later, he refuses to allow me to carry the groceries.
4:00 pm - 1:00 am The weather was too beautiful to pass up. We took Bartle for a walk before sitting outside and relaxing for a while. Eventually, I napped while James worked out and made dinner. Our evening was pretty uneventful, with the exception of me cheering for Michigan during the Sweet Sixteen game followed by the Florida game. These two games lead to a Michigan vs. Florida match in the Elite Eight on Sunday. Since I could only monitor the game via the internet, we watched Supernatural (our shared show) and Arrow (James makes fun that I watch this show based on the comic). I stayed awake to see the end of the game and crashed to sleep. The insomnia seems to be at an end.
Friday, March 29, 2013
Pure Procrastination
Day 5, Thursday
9:00 am - 12:00 pm Enjoyed a relaxing morning with coffee, a book, and finally unpacking my suitcase. I used to hate leaving the suitcase lying around full of dirty clothes, but in the past few years, I've shrugged it off. The laundry will eventually get done. Played fetch with Bartle, who acted like the energizer dog and wore me out. A little nap time and I was ready to go.
12:00 pm - 3:00 pm This is the dilemma of working from home. I need to make a huge dent in my lectures, yet I think of a multitude of other pressing matters, like inspecting the house for required repairs. I discovered the landscaping project we completed in the fall needs to be expanded. There is still too much standing water around the house. Dave, Mr. Talkative Neighbor, told me that a majority of the homeowners in our subdivision have expanded their landscaping in order to improve the drainage issue. I did a walk around to see how other's have addressed this issue. I also found a few cracks in the drywall so I researched how to repair them. If anyone has experience with repairing drywall, would you be willing to show me how to do it the first time? Since the weather was so nice, I opened some windows and discovered the dust layer that has piled up in the back offices where we haven't opened the curtains all winter. See, it is easy to avoid work. Yet I didn't complete any tasks on the monthly chore list.
3:00 pm - 6:00 pm I felt the draw of another nap and granted myself permission. The exhausted feeling has not been a slow draw but rather a slamming into a wall sensation which I'm sure is due to the new dose not having the same kick. Thankfully, my withdrawal has not been that bad. A few tremors and weakness issues but those are livable. I ignored the concern that crept in when I thought of hitting that wall at work next week.
The kids were running around outside with their Nerf ball guns, which I know will drive James crazy. The kids believe the entire neighborhood is their playground so they are always running around and playing between our yards. It didn't bother me until our path lights were stolen on two separate occasions.
Deciding to test my limits, I pushed myself through a two hour workout. Those sore muscles were screaming for me to stop, but I figured this was the time to test my endurance.
6:00 pm - 10:00 pm Finally, I began working on my lectures, but quickly found another project. I was sent a request from FGS and being the good worker bee, I began researching the question. I began to feel sleepy so I decided to take a break and read, which was the last thing I remember. Of course by the time I got up the next day, someone else had already responded to the FGS query.
Overall, it was a good day. I was definitely in a better mood and felt productive though I didn't get much accomplished.
9:00 am - 12:00 pm Enjoyed a relaxing morning with coffee, a book, and finally unpacking my suitcase. I used to hate leaving the suitcase lying around full of dirty clothes, but in the past few years, I've shrugged it off. The laundry will eventually get done. Played fetch with Bartle, who acted like the energizer dog and wore me out. A little nap time and I was ready to go.
12:00 pm - 3:00 pm This is the dilemma of working from home. I need to make a huge dent in my lectures, yet I think of a multitude of other pressing matters, like inspecting the house for required repairs. I discovered the landscaping project we completed in the fall needs to be expanded. There is still too much standing water around the house. Dave, Mr. Talkative Neighbor, told me that a majority of the homeowners in our subdivision have expanded their landscaping in order to improve the drainage issue. I did a walk around to see how other's have addressed this issue. I also found a few cracks in the drywall so I researched how to repair them. If anyone has experience with repairing drywall, would you be willing to show me how to do it the first time? Since the weather was so nice, I opened some windows and discovered the dust layer that has piled up in the back offices where we haven't opened the curtains all winter. See, it is easy to avoid work. Yet I didn't complete any tasks on the monthly chore list.
3:00 pm - 6:00 pm I felt the draw of another nap and granted myself permission. The exhausted feeling has not been a slow draw but rather a slamming into a wall sensation which I'm sure is due to the new dose not having the same kick. Thankfully, my withdrawal has not been that bad. A few tremors and weakness issues but those are livable. I ignored the concern that crept in when I thought of hitting that wall at work next week.
The kids were running around outside with their Nerf ball guns, which I know will drive James crazy. The kids believe the entire neighborhood is their playground so they are always running around and playing between our yards. It didn't bother me until our path lights were stolen on two separate occasions.
Deciding to test my limits, I pushed myself through a two hour workout. Those sore muscles were screaming for me to stop, but I figured this was the time to test my endurance.
6:00 pm - 10:00 pm Finally, I began working on my lectures, but quickly found another project. I was sent a request from FGS and being the good worker bee, I began researching the question. I began to feel sleepy so I decided to take a break and read, which was the last thing I remember. Of course by the time I got up the next day, someone else had already responded to the FGS query.
Overall, it was a good day. I was definitely in a better mood and felt productive though I didn't get much accomplished.
Thursday, March 28, 2013
A Different Perspective
Day 4, Wednesday
12:00 am - 4:00 am The vicious cycle continued and I could not fall asleep. I finally accepted defeat and decided to quit fighting it. I didn't have anything planned for the day except to cancel the neurologist appointment that my primary care had arranged. I didn't see the point in seeing the neurologist if my specialist was sending me to a different neurologist. I admit to feeling defeated at hearing that there wasn't an answer to my concerns except another drug treatment.
Since I couldn't sleep, I read through my blog entries from last year when I chronicled my week and was surprised to discover that I struggled back then as well. But I saw an improvement ... I have not had a fugue moment in months, except for the week I worked ten days straight. This helped me feel better.
Setting my alarm so I could call the doc, I was startled to see my neurologist appointment with Dr. K was scheduled for today rather than Thursday.
8:30 am -10:30 am Upon waking, I frantically completed the paperwork for this new appointment while running around getting ready. I had a negative attitude about this visit. Dr. S had always listened to me and I wasn't in the mood for another blowoff. To clarify these appointments; Dr. S is a pulmonary doctor and Dr. K is a neurologist. They both specialize in sleep disorders in their fields. I originally wanted to see a neurologist because my disorder is neurological and not pulmonary. Though Dr. S had diagnosed me, he admitted he could only treat my symptoms to a certain extent but after the day before I really didn't want to see another doctor.
10:30 am -12:30 pm I am so glad that I went to this appointment. Dr. K listened to my concerns and addressed them in a firm manner. She agreed with me that the stimulant is too much and is contributing to my insomnia along with the chest pressure. She also agreed that I should not begin the Xyrem treatment. She believes that all of my symptoms stem from two sources; the stimulant and my emotional state.
I know this is similar to what Dr. S said except he refused to acknowledge the stimulant was a factor and spoke repeatedly of my stress influencing my energy. Instead Dr. K spoke about the continual fear and guilt that narcos suffer. I have previously written on this blog about my guilt over failing people because I'm so exhausted or bail on things. I know from my support group that others suffer from these same concerns. Dr. K stated that I am overly compensating for a failing that hasn't occurred and may never occur. Essentially, I need to give myself a break.
While in SLC last week, I was stressed and worked hard, yet I had the best sleep in months. Why? Because I wasn't in my environs where I'm continuously aware of all the tasks that need to get done. I allowed myself to take naps and go to bed early, which is a mental block I have when at home.
They are scheduling me with a neuropsychiatrist, someone who is familiar with mapping out the neuropathway that the brain takes in these situations and who is more familiar with my condition. They will help me determine the best way for me to nap including some cognitive therapy to teach my mind how to shut down.
She said that I can do this with the lower stimulant but that we have to address my current sleep deficit which is also why I've been full of self-doubt and excessively weepy as of late. I have previously undergone cognitive therapy and believe it can dramatically make a difference in a person's life so I walked away feeling better.
12:30 pm - 2:30 pm Following the appointment, I had to connect with my gals so they would know the latest. In the past few weeks, each of us have experienced some type of chaotic upheaval in our lives and each of us have dropped everything in order to be supportive. All three of them reminded me that our friendships are based on unconditional love. Thanks again! I'm done with the emotional upheaval.
I spoke with my parents who are waiting to hear about my dad's retirement paperwork and took my first step in giving myself a break. Dad will be completing some work on the farm in WV for the next two weeks. Immediately, I thought of how I could visit with him, but decided against it. Between the drive and the stress of dealing with the family, it's not a good idea.
2:30 pm - 5:30 pm I crashed hard. One minute, I was picking up around the house and the next, my legs were jello. After a lengthy nap, I woke on the couch with Bartle strewn over my feet and Cleo tucked next to my legs. It still amazes me that somehow all three of us fit on the couch together.
5:30 pm - 11:00 pm After paying some bills, in which I cringed watching my accounts shrink, I finally opened a PowerPoint presentation to begin working on my FGS lectures. I'm not as invested in these lectures which makes it feel like I'm slogging through my thought process. Hopefully, that will change soon.
12:00 am - 4:00 am The vicious cycle continued and I could not fall asleep. I finally accepted defeat and decided to quit fighting it. I didn't have anything planned for the day except to cancel the neurologist appointment that my primary care had arranged. I didn't see the point in seeing the neurologist if my specialist was sending me to a different neurologist. I admit to feeling defeated at hearing that there wasn't an answer to my concerns except another drug treatment.
Since I couldn't sleep, I read through my blog entries from last year when I chronicled my week and was surprised to discover that I struggled back then as well. But I saw an improvement ... I have not had a fugue moment in months, except for the week I worked ten days straight. This helped me feel better.
Setting my alarm so I could call the doc, I was startled to see my neurologist appointment with Dr. K was scheduled for today rather than Thursday.
8:30 am -10:30 am Upon waking, I frantically completed the paperwork for this new appointment while running around getting ready. I had a negative attitude about this visit. Dr. S had always listened to me and I wasn't in the mood for another blowoff. To clarify these appointments; Dr. S is a pulmonary doctor and Dr. K is a neurologist. They both specialize in sleep disorders in their fields. I originally wanted to see a neurologist because my disorder is neurological and not pulmonary. Though Dr. S had diagnosed me, he admitted he could only treat my symptoms to a certain extent but after the day before I really didn't want to see another doctor.
10:30 am -12:30 pm I am so glad that I went to this appointment. Dr. K listened to my concerns and addressed them in a firm manner. She agreed with me that the stimulant is too much and is contributing to my insomnia along with the chest pressure. She also agreed that I should not begin the Xyrem treatment. She believes that all of my symptoms stem from two sources; the stimulant and my emotional state.
I know this is similar to what Dr. S said except he refused to acknowledge the stimulant was a factor and spoke repeatedly of my stress influencing my energy. Instead Dr. K spoke about the continual fear and guilt that narcos suffer. I have previously written on this blog about my guilt over failing people because I'm so exhausted or bail on things. I know from my support group that others suffer from these same concerns. Dr. K stated that I am overly compensating for a failing that hasn't occurred and may never occur. Essentially, I need to give myself a break.
While in SLC last week, I was stressed and worked hard, yet I had the best sleep in months. Why? Because I wasn't in my environs where I'm continuously aware of all the tasks that need to get done. I allowed myself to take naps and go to bed early, which is a mental block I have when at home.
They are scheduling me with a neuropsychiatrist, someone who is familiar with mapping out the neuropathway that the brain takes in these situations and who is more familiar with my condition. They will help me determine the best way for me to nap including some cognitive therapy to teach my mind how to shut down.
She said that I can do this with the lower stimulant but that we have to address my current sleep deficit which is also why I've been full of self-doubt and excessively weepy as of late. I have previously undergone cognitive therapy and believe it can dramatically make a difference in a person's life so I walked away feeling better.
12:30 pm - 2:30 pm Following the appointment, I had to connect with my gals so they would know the latest. In the past few weeks, each of us have experienced some type of chaotic upheaval in our lives and each of us have dropped everything in order to be supportive. All three of them reminded me that our friendships are based on unconditional love. Thanks again! I'm done with the emotional upheaval.
I spoke with my parents who are waiting to hear about my dad's retirement paperwork and took my first step in giving myself a break. Dad will be completing some work on the farm in WV for the next two weeks. Immediately, I thought of how I could visit with him, but decided against it. Between the drive and the stress of dealing with the family, it's not a good idea.
2:30 pm - 5:30 pm I crashed hard. One minute, I was picking up around the house and the next, my legs were jello. After a lengthy nap, I woke on the couch with Bartle strewn over my feet and Cleo tucked next to my legs. It still amazes me that somehow all three of us fit on the couch together.
5:30 pm - 11:00 pm After paying some bills, in which I cringed watching my accounts shrink, I finally opened a PowerPoint presentation to begin working on my FGS lectures. I'm not as invested in these lectures which makes it feel like I'm slogging through my thought process. Hopefully, that will change soon.
Wednesday, March 27, 2013
Love My Gals
Day 3, Tuesday
9:00 am - 12:00 pm Though I went to bed late and should have slept-in longer, I was excited about my lunch date. My morning slipped away quickly while I completed paperwork for a Dr.'s appointment and played in the snow with Bartle. I love watching him dive in and hide so that his eyes and nose are the only things that distinguish him from the snow.
12:00 pm - 1:15 pm While waiting for the gals, I watched SportsCenter and listened to the people at the next table who were discussing the Florida vs. FGCU match-up. I admit that I am not a Billy Donovan fan. Just as I will forever be a Spurrier fan due to a personal interaction, the opposite can be said of Donovan. My lunch with Becky and Erin was way too short but definitely needed. I wish we had more time together.
When driving to Dr. S's office, I'm usually coming from the opposite direction but was positive that I could navigate the one way streets towards Lake Ave. Of course, I'm directionally challenged and should have known better. I went the wrong direction and went too far northeast and had to use the GPS to make my way back.
1:15 pm - 3:00 pm Dr. S is my specialist and the one I credit with saving me by listening and properly diagnosing me. On this visit, he addressed all of my concerns but I felt he didn't listen and I was very frustrated by the time I left. He asked very targeted questions, but was a bit biased in his views to my statements and concerns. He is working with my insurance company to get me on a new treatment, one that requires me to be closely monitored by a pharmacist and a neurologist who specializes in this medication. Several people in my support group have tried this treatment so I'm aware of the positives and pitfalls and have many legitimate concerns. I've agreed to meet with the neurologist in order to discuss my options. Mich reminded me later that I am a unique snowflake so I may not have the same issues as other people. Love ya, Mich!
My frustration with the doc stemmed from his continuous disregard of my chest pressure and pains, the denial that my insomnia symptoms were stemming from too much stimulant and adrenaline kicks, and the remark that my energy flux is caused by me not properly handling my stress. He recommended a psychiatrist, which made my head explode. I wholeheartedly believe in therapy and have seen a variety of professionals over the past twenty years but that doesn't answer my question: when working a variety of shifts and having physically draining days or low productive days, how can I balance the conditions and better deal with this roller coaster of energy I appear to be on? Controlling stress is not the final answer.
3:00 pm - 4:30 pm Recently, Amy joked that I am high maintenance since I had to check my luggage because my beauty products did not fit in a quart-sized bag when I flew to SLC. After my disturbing appointment with the doc, I deserved some pampering and it's Clinique Bonus Time. Please tell me that other women have multiple make-up color options based on how they feel on that particular day.
I felt fine while running errands, but then the frustration hit me when I stopped at Walgreens. Sometimes the frustration explodes like a cork and I start crying. Thankfully, Mich answered the phone and listened as I sat in the parking lot and vented my anger, fear, and exhaustion at the idea of convincing another doctor that I truly know my body and mind, especially the doctor who had finally given me proof that I had a legitimate condition.
4:30 pm - 12:00 am Upon returning home, Bartle and I played in the yard which was now a mud pile. There is nothing more fun than cleaning a muddy white puffball (haha). I decided to push myself and worked out for more than 90 minutes. Adrenaline kicked in making it difficult to sleep, leading to another long night and some truly sore muscles. On the positive side, I had some hot dates during the late hours as I caught up on my guilty pleasures, i.e. t.v. shows.
Relaxing Techniques
Day 2, Monday
12:00 am - 4:30 am When we entered Delaware County, the road essentially disappeared. So much for getting a nap while on the road though I found our conversations interesting. My boss kept asking if his driving was making me nervous, which it wasn't but the other idiots and the road conditions had me a bit concerned. Around 2:00 am, my boss quipped that it was only midnight in SLC. I pointed out that I was typically in bed at that time, with Saturday being the exception. A little after 2:30, we exited the interstate and followed James' tire tracks to the gas station.
Arriving home, Bartle and Cleo greeted me rather enthusiastically. Since my last meal had been lunch at the airport, I was starving and pleased to discover James had made pumpkin muffins. He did this upon my return from the FGS conference as well so this is becoming a nice tradition. After a desperately needed shower (I feel gross after flying), I was happy to see some of the dryness from SLC was already dissipating. The dry air in SLC had wrought damage to my hair and skin. In the meantime, Bartle enjoyed some misdeeds, which caused me to yell at him. James gleefully informed me that Bartle had not exhibited any of these behaviors while I was gone and that I obviously bring out the worst in him.
Before falling asleep, I told James to wake me so I could clear the drive since he needed to go to work.
11:30 am - 2:00 am I slept through my alarms which was expected and received the wake-up call from the pets who were crawling over me trying to get my attention. Getting up was difficult and I had to hunt for my meds and recall my routines which had been altered while I was away. I had not unpacked my suitcase and nothing was laid out for the morning so I was in a state of confusion. I eventually discovered James outside clearing the last section of the drive. He hadn't wanted to wake me which was sweet.
It took a great deal of willpower but I forced myself to truly take the day off. Within a couple of hours, I felt the need to be productive so I washed one load of laundry. Following a change in routine, I am supposed to grant my body a day of complete rest, but I rarely adhere to this because I'm conscious of the work that is waiting for me. Today was a rarity. I remained in my pajamas all day and did not work on any programs or open any work-related emails or complete the household chore list that appears to be the same length as when I left. I took the snow day and enjoyed a book and periodically napped but this also led to me remaining awake late into the night.
12:00 am - 4:30 am When we entered Delaware County, the road essentially disappeared. So much for getting a nap while on the road though I found our conversations interesting. My boss kept asking if his driving was making me nervous, which it wasn't but the other idiots and the road conditions had me a bit concerned. Around 2:00 am, my boss quipped that it was only midnight in SLC. I pointed out that I was typically in bed at that time, with Saturday being the exception. A little after 2:30, we exited the interstate and followed James' tire tracks to the gas station.
Arriving home, Bartle and Cleo greeted me rather enthusiastically. Since my last meal had been lunch at the airport, I was starving and pleased to discover James had made pumpkin muffins. He did this upon my return from the FGS conference as well so this is becoming a nice tradition. After a desperately needed shower (I feel gross after flying), I was happy to see some of the dryness from SLC was already dissipating. The dry air in SLC had wrought damage to my hair and skin. In the meantime, Bartle enjoyed some misdeeds, which caused me to yell at him. James gleefully informed me that Bartle had not exhibited any of these behaviors while I was gone and that I obviously bring out the worst in him.
Before falling asleep, I told James to wake me so I could clear the drive since he needed to go to work.
11:30 am - 2:00 am I slept through my alarms which was expected and received the wake-up call from the pets who were crawling over me trying to get my attention. Getting up was difficult and I had to hunt for my meds and recall my routines which had been altered while I was away. I had not unpacked my suitcase and nothing was laid out for the morning so I was in a state of confusion. I eventually discovered James outside clearing the last section of the drive. He hadn't wanted to wake me which was sweet.
It took a great deal of willpower but I forced myself to truly take the day off. Within a couple of hours, I felt the need to be productive so I washed one load of laundry. Following a change in routine, I am supposed to grant my body a day of complete rest, but I rarely adhere to this because I'm conscious of the work that is waiting for me. Today was a rarity. I remained in my pajamas all day and did not work on any programs or open any work-related emails or complete the household chore list that appears to be the same length as when I left. I took the snow day and enjoyed a book and periodically napped but this also led to me remaining awake late into the night.
Tuesday, March 26, 2013
The Road Back
A year ago, I followed Janssen's example of chronicling my life for a full week. Being on vacation this week, I'm hoping that my entries will not be as intense as the ones last year when Bartle had his eye tumor removal and I was working on my SoCal lectures.
Day 1, Sunday
12:00 am - 3:00 am Final night of a conference, where else would I be except in a dueling piano bar. I would have to say that Keys on Main in Salt Lake City is one of the best piano bars I have visited. Following last call and a brisk walk several blocks in the cold to the hotel, we were met by the Hog Convention attendees who were lingering outside the entrance. After printing boarding passes, I called James to report the night's activities and discovered I was too wired and unable to sleep so I began packing for the next day.
7:30 am - 10:30 am Amazingly enough, I woke with the first alarm, packed and got dressed quickly to meet my boss for breakfast. For some who have never seen me in a more casual setting, my appearance may have been a bit startling. Not many people have seen me in a ponytail and minimal makeup. It was humorous how many times we were stopped for conversation on our way across the lobby. It was also enlightening to hear my boss jokingly inform a group that he had made a smart decision in promoting me (It is nice to hear.). Then I received a hug and praise from a colleague who typically ignores me which prompted my boss to remark that he did not receive a handshake and yet I received a hug. Then we met two other colleagues for breakfast.
10:30 am - 3:00 pm I spent more than two hours on the phone with Mich playing catch-up followed by a nap before heading downstairs to meet my boss and our shuttle. After a round of final goodbyes we headed to the airport. Amy was still in the terminal so the three of us had lunch which was humorous. Anyone who has ever been around Amy and I together can attest that sometimes the conversation filter comes off. We're very similar in our thoughts and humor, which my boss has not witnessed in tandem.
3:00 pm - 12:00 am Our flight was on time though the weathermen were predicting six to eight inches of snow in Indianapolis. Upon arrival, the snow did not appear too bad until we reached the parking lot and the shape of the car was disguised by the layers of snow. Most of the interstate signs were covered and the roadway was icy through the city. As soon as we reached I-69, the road appeared to get worse. With the snow coming down in a thicker mist and no snow plows in sight, the drive became more difficult. Our speed ranged from 20-40 mph based on if other tire tracks were visible, if we could see the road, and other drivers. We were on the road longer than expected.
Day 1, Sunday
12:00 am - 3:00 am Final night of a conference, where else would I be except in a dueling piano bar. I would have to say that Keys on Main in Salt Lake City is one of the best piano bars I have visited. Following last call and a brisk walk several blocks in the cold to the hotel, we were met by the Hog Convention attendees who were lingering outside the entrance. After printing boarding passes, I called James to report the night's activities and discovered I was too wired and unable to sleep so I began packing for the next day.
7:30 am - 10:30 am Amazingly enough, I woke with the first alarm, packed and got dressed quickly to meet my boss for breakfast. For some who have never seen me in a more casual setting, my appearance may have been a bit startling. Not many people have seen me in a ponytail and minimal makeup. It was humorous how many times we were stopped for conversation on our way across the lobby. It was also enlightening to hear my boss jokingly inform a group that he had made a smart decision in promoting me (It is nice to hear.). Then I received a hug and praise from a colleague who typically ignores me which prompted my boss to remark that he did not receive a handshake and yet I received a hug. Then we met two other colleagues for breakfast.
10:30 am - 3:00 pm I spent more than two hours on the phone with Mich playing catch-up followed by a nap before heading downstairs to meet my boss and our shuttle. After a round of final goodbyes we headed to the airport. Amy was still in the terminal so the three of us had lunch which was humorous. Anyone who has ever been around Amy and I together can attest that sometimes the conversation filter comes off. We're very similar in our thoughts and humor, which my boss has not witnessed in tandem.
3:00 pm - 12:00 am Our flight was on time though the weathermen were predicting six to eight inches of snow in Indianapolis. Upon arrival, the snow did not appear too bad until we reached the parking lot and the shape of the car was disguised by the layers of snow. Most of the interstate signs were covered and the roadway was icy through the city. As soon as we reached I-69, the road appeared to get worse. With the snow coming down in a thicker mist and no snow plows in sight, the drive became more difficult. Our speed ranged from 20-40 mph based on if other tire tracks were visible, if we could see the road, and other drivers. We were on the road longer than expected.
Monday, March 18, 2013
Sleep Petition
I have documented some of my everyday struggles as I try to balance the life I desire and the restraints of my narcolepsy. Most recently, I've had to admit that emergency napping is not the answer for my condition. My body requires a schedule and periods of rest in order to properly function.
For those who don't quite understand what my condition entails, here is a brief explanation. When falling asleep, there are four stages of rest for your mind and body before you enter REM sleep, which is when your brain is active and you dream. The average person takes more than 15 minutes in each stage, so it can take roughly 90 minutes of solid rest before a body slips into REM. That 90 minute window of mental and physical rest is when the body's musclular, neeurological, and immune systems heal and repair themselves.
For me, I enter REM on average in less that 5 minutes. During my test, there were at least two instances when my mind went into REM in less than a minute. That means while other people nightly receive 90 minutes of mental and physical rest, I receive 1-5 minutes. Periodic naps, up to three a day, helps restart the brain and allows it a reprieve for a few minutes in the hopes the body and mind might get a break. I've been told that skipping a nap is similar to other people functioning without sleep for 24 hours. This is my everyday and the damage that lack of rest does to the mind and body.
I recently documented my experience with a so-called health professional, who failed to comprehend the seriousness of my condition. This is just an example of how people with sleep disorders can be mistreated. I have been symptomatic for decades, yet was told repeatedly that I suffered from chronic fatigue, fibromyalgia, depression, and anxiety. I was regularly told it was all in my head and was dismissed. The months leading to my diagnosis, I thought I was losing my mental capabilities because it was a struggle to form sentences and remember things. It's scary to realize that if I had not forced the issue and switched doctors, to a woman who realized what my symptoms signified, I would have continued in the downward spiral of diminished mental capabilities. I could have injured myself or others because I was easily confused, slept for multiple days and lost track of time, physically collapsed in cataplexy episodes which is a form of paralysis (while in REM, your body is paralyzed), and suffered from hallucinations (When completely exhausted, the line between sleep and consciousness is thin and for a narcoleptic, the body can slip into a REM state though the person believes they are awake.).
There is no cure or treatment for narolepsy. The no treatment is the worst part. The only thing the doctors can do is treat the main symptom, which is the daytime exhaustion. This requires the daily use of stimulants. For myself and others, these stimulants has triggered tachycardia, which is an elevated heart rate. Considering that my family is predisposed to have arterial difibrillation, which is further exasperated by the use of stimulants, I personally would prefer a different treatment plan. Yet, I can clearly state that I can not function without the stimulants.
This is my personal story of why I ask that everyone who knows me and anyone they can ask, to please sign this Raise Awareness of Sleep Disorders Petition. It is one step in the overall hopes that the medical profession, pharamceuticals, and employers will become more aware of these conditions and how lives are impacted by sleep disorders.
For those who don't quite understand what my condition entails, here is a brief explanation. When falling asleep, there are four stages of rest for your mind and body before you enter REM sleep, which is when your brain is active and you dream. The average person takes more than 15 minutes in each stage, so it can take roughly 90 minutes of solid rest before a body slips into REM. That 90 minute window of mental and physical rest is when the body's musclular, neeurological, and immune systems heal and repair themselves.
For me, I enter REM on average in less that 5 minutes. During my test, there were at least two instances when my mind went into REM in less than a minute. That means while other people nightly receive 90 minutes of mental and physical rest, I receive 1-5 minutes. Periodic naps, up to three a day, helps restart the brain and allows it a reprieve for a few minutes in the hopes the body and mind might get a break. I've been told that skipping a nap is similar to other people functioning without sleep for 24 hours. This is my everyday and the damage that lack of rest does to the mind and body.
I recently documented my experience with a so-called health professional, who failed to comprehend the seriousness of my condition. This is just an example of how people with sleep disorders can be mistreated. I have been symptomatic for decades, yet was told repeatedly that I suffered from chronic fatigue, fibromyalgia, depression, and anxiety. I was regularly told it was all in my head and was dismissed. The months leading to my diagnosis, I thought I was losing my mental capabilities because it was a struggle to form sentences and remember things. It's scary to realize that if I had not forced the issue and switched doctors, to a woman who realized what my symptoms signified, I would have continued in the downward spiral of diminished mental capabilities. I could have injured myself or others because I was easily confused, slept for multiple days and lost track of time, physically collapsed in cataplexy episodes which is a form of paralysis (while in REM, your body is paralyzed), and suffered from hallucinations (When completely exhausted, the line between sleep and consciousness is thin and for a narcoleptic, the body can slip into a REM state though the person believes they are awake.).
There is no cure or treatment for narolepsy. The no treatment is the worst part. The only thing the doctors can do is treat the main symptom, which is the daytime exhaustion. This requires the daily use of stimulants. For myself and others, these stimulants has triggered tachycardia, which is an elevated heart rate. Considering that my family is predisposed to have arterial difibrillation, which is further exasperated by the use of stimulants, I personally would prefer a different treatment plan. Yet, I can clearly state that I can not function without the stimulants.
This is my personal story of why I ask that everyone who knows me and anyone they can ask, to please sign this Raise Awareness of Sleep Disorders Petition. It is one step in the overall hopes that the medical profession, pharamceuticals, and employers will become more aware of these conditions and how lives are impacted by sleep disorders.
Sunday, March 17, 2013
St. Patrick's Day
It has become an annual tradition for the gals and I to stop by JKs for St. Patrick's Day. It is a time for us to regroup and reconnect. These gals are the best in the world and I couldn't imagine my life without them.
 |
 |
| Of course, we had to ask a stranger to take a photo with us because our first year attending this celebration, we had our picture taken with High Five Guy. |
 |
Thursday, March 14, 2013
Snow Day
The Snow Day of 2013 was fun for me as a new homeowner!
 | Seeing this when I got home, I realized B and I would not be taking an evening stroll through the backyard. As it continued, I kept wondering how much higher the snow would rise before it reached the office window. The circular item towards the mid-right is one of my large plant holders. |
| During the snow storm |
 | The circular plant holder to the mid-right is almost buried at this time. |
| The next day |
 | This was after a day of melting. I still did not have access to my back door. |
| As it melted |
Tuesday, March 12, 2013
Bad Doctor
Hoping to get a referral to a neurologist, my recent visit to a new primary care doctor begins our latest episode of bad doctor. Though honestly, the whole mess began when the nurse asked about my last menstrual cycle. After explaining to the nurse my reasons for the appointment including my most recent symptoms, I
was in for a shock to discover that not only do the doctors not read your
file but that they don't even take the time to read the notes concerning
your visit. Here is a loose transcript of our conversation:
Doc: So you are here to request a narcolepsy test?
Mel: No, I've been a diagnosed narcoleptic for 18 months. I'm
here because as you can see from previous appointments I've had cardiac
episodes due to the stimulant. I would like to see a neurologist to
determine what other medications I could take as I've been having the
same cardiac episodes again. Plus I've not felt good since the change in my meds.
Doc: Does that mean you'll just fall asleep in the middle of our conversation?
Mel: (Can you believe a doctor would ever say that? Insensitive much?) Only if I
do not take care of myself. My symptoms manifest themselves as chronic exhaustion and flu-like symptoms. When my mind does not rest, my neurological system directs my organs not to absorb vitamins and minerals, all of which has been documented for the past 2 years in my file.
Doc: So you want a blood test check your vitamin level?
Mel: No, if you look at my file you'll see that my vitamin count varies greatly due to my disorder. I'm vitamin deficient because of it. I am concerned about symptom x.
Doc: That is caused by lack of sleep. I'll prescribe a sleeping pill.
Mel: I'm currently taking a stimulant. I have no interest in
riding the Elvis train of uppers and downers. I'm concerned with the current
stimulant level since I've had cardiac episodes like the ones before.
Doc: Have you considered it's anxiety?
Mel: I cut my dose by 1/4 and some of the pressure in my chest has eased. With my family history of arterial fibrillation and my
previous episodes of a racing heart and pain, I think this is more than anxiety. I'm a type-A personality and always stressed but hearing my heart beat pound in my ears is abnormal.
Doc: Arterial fibrillation is caused by damage to the heart.
Mel: I'll be sure to tell my mother, her seven siblings, my cousins, and their cardiologists who all claim it's genetic.
Doc: (After examining my heart) I'll give you a beta blocker that will slow the heart rate.
Mel: I really don't want another pill.
Doc: There is the everyday or emergency dose. I think you should
have the everyday. The everyday is better because it keeps your blood
pressure low.
Mel: My blood pressure is low. It doesn't need to go any lower.
Doc: Your bp was 120/80.
Mel: Yes but if you look at my chart, that is high for me. I average 90/60. (There was some back and forth before she finally agreed to the emergency dose and my referral.)
Mel: Could I have a copy of my narcolepsy test results to show the neurologist?
Doc: The neurologist will order another test.
Mel: He will not order another $25,000 test.
Doc: He'll need to see if the medicine has made a difference.
Mel: It is a neurological disorder that has no treatment or cure. The stimulant is to minimize the symptoms. There will be no change in my brain's reaction to it.
She finally gave me copies of my results.
Doc: He'll need to see if the medicine has made a difference.
Mel: It is a neurological disorder that has no treatment or cure. The stimulant is to minimize the symptoms. There will be no change in my brain's reaction to it.
She finally gave me copies of my results.
Subscribe to:
Posts (Atom)
