Winter's Edge

Though we didn't have the predicted more than six inches on Wednesday, it was still slick and nasty outside. This bad weather led Matt to cancel our lunch plans and I was offered the chance to take some vacation. Obviously, I took the vacation.

This weather forces me to realize tmany angles to it, but it seems the corner where my patio lies gets slammed with snow, wind, and debris. If you've ever wondered what 40 mph winds can do with snow, check out the pic. It looked like someone had taken a paint gun to my back door. Of course, Bartle had to be in the pic!

For those who may not have heard, Bartle is the man of the house. The house which will legally belong to me in less than five days. Thank you to everyone for their compassion and love, and for the hours of listening to me as I make my way through this situation.

And don't believe I'll be sitting around lonely. Plans for the weekend include a night out with Becky and Mandy, possibility of seeing the Veronica Mars movie, a Skype call with Cheryl, and the annual St. Patty's Day ritual with the gals. This of course is all contingent on my antibiotics kicking in.

I've also been listening to a lot of music the past few weeks. Part of this is due to the fact that there was a disagreement over who owned which CDs so I'm backing up my music collection. Lots of Pearl Jam, Stone Temple Pilots, Godsmack, Soundgarden, and Foo Fighters are being played. Katy Perry, Maroon 5 (who I used to find annoying), Imagine Dragons, and John Newman's Love Me Again is getting a lot of play on my Pandora account. Then there is my obsessive playing of Elky Summers (gals, Hello, How Are You Doing rips at me every time), Dave Matthews Band, and someone's recommendation of Van Morrison's Moondance.

It's been a wild month and promises to get crazier! But only in the best of ways.

Things are Changing

The past few weeks have been seriously intense and crazy with some personal things as well as a career opportunity. I will share details once I acclimate to everything going on around me. Last week was one for the memory books, including several shocking revelations from people close to me, but that had some other competition for my attention. Apparently, my life and body is about to undergo some interesting changes.

My baseline for the allergy shots has been established, but my mind sort of shutdown when the nurse brought out the EpiPen. I had not really given it much thought that the allergens that harm my body are being injected directly into me and may cause something more than sneezing and coughing. Apparently there is a small chance I could go into anaphylactic shock following these injections. The nurse had to train me on how to jab the needle into my thigh to administer epinephrine should I have one of these episodes. Me and needles are not friends, hence the lack of piercings and tattoos but who knows maybe that will change.

This may sound conceited, but I like my body as it is. Of course, I wish my shape was not such a dramatic pear shape but I love my curves and have been pleased with my cleavage, especially after years of being a scrawny tomboy. All of that may change soon. The doc prescribed me something to adjust my hormone levels again and informed me that the "boys will like the results." What? Apparently, this new med may cause a noticeable increase in breast size. Some women may be okay with this but honestly, that's an area of my body that I really don't want to change. So if you hear rumors that I had a boob job, just nod and agree.

This Job is Killing Me

Wednesday was D-day. Allergy testing was to reveal why I have been so sick the past year and the doc was going to create a treatment plan. As with any medical testing, the prep work is always a joy. For these tests, I had to quit taking a majority of my medications beginning ten days prior. Then five days before, I could not take any other meds, such as vitamins, ibuprofen, acetaminophen, or heartburn reducers. Near migraines became my constant companion. The day of testing, I had to smear some anesthetic cream on my arms, in which there were instructions on properly smearing it since we only wanted to numb the top layer of skin. Then I had to wrap my arms in plastic so the cream would settle rather than evaporate or rub off against my clothing.

My appointment was for 1.5 hours then a break before consulting with the allergist. I know it will surprise everyone that it became 2.5 hours of testing followed by a consult with my allergist and the head of the allergy department. They said it was testing for eighteen allergens. No one mentioned that they did the scratch test for the initial eighteen, then based on the reactions, another twenty-six injections. If there is a reaction to a certain allergen, then more injections of that allergen and its relations. I lost count after thirty-five injections. Then the numbing cream wore off, so I felt the final seventeen injections as they were administered. Considering that I am terrified of needles, this was not a pleasant experience though my nurse was wonderful and tried to get me to focus on other things.

All those times I told James that mowing the yard made me sick, I now have proof. I'm allergic to the mold spores that are released when mowing grass, along with russian thistle and pine which are prevalent in this region. Molds are a real issue for me including one that is commonly found in paper. Then there is my extremely high numbers for both forms of dust mites. This might explain why I started to get sick when I moved into a job that requires me to do a lot of preservation work with old papers and books. My office shelves are filled with these items.

My frequent swelling was bad enough that the head of the department was called in. My doc had never seen a case like mine but thankfully the other doctor had so she had a few recommendations. I was given a Depo Medrol injection to take down the swelling, but I needed to sit for half an hour to make sure I didn't pass out. Since none of the meds or inhalers work on me, plus I'm subjected to my allergens everyday, the only solution the doc had for me is allergy shots. These have to be given for possibly years and require that I go on the same day every week. It's a big commitment but the other option is to remain sick.

Thankgiving Musings

I had plans to post sooner, but the plague stole all my energy and prevented me from sharing my Thanksgiving weekend adventures. I love Thanksgiving! It is representative of the fall season, includes a large family meal featuring all my favorites, kicks-off the holiday season which requires decorating the house while reminiscing over the various ornaments and trinkets, and the weekend is dominated by state rivalries in college football.

Dad, Mom, Mel & James

My mom is the youngest of eight kids, meaning we have a large family who are scattered across the US so it is rare for us to get together. Though our last family reunion was almost twenty years ago, I remain close with some of our relations while there are others who I haven't seen in what feels like forever.

My Aunt Kay does not realize that I have been aware of her struggles and they have greatly influenced my life. I admire her strength and perseverance, her friendship with her ex and daughter, and her love of my mom. Kay survived breast cancer at a young age but required a full mastectomy. She was one of the women whose silicone implants leaked, poisoning her body and destroying one of her lungs. Kay's remaining lung is failing and she was denied a transplant hence a decision was made to have a reunion, in order to have these final memories with her.

James and I drove to a little town outside of Pittsburgh to spend Thanksgiving with almost fifty other people, most of whom hubby had never met. In order to prepare James for the mayhem of a loud family reunion, we began our road trip with lots of loud singing, i.e. my singing. REM was the band of choice for this trip but Nirvana, Stone Temple Pilots, and Linkin' Park had quite a bit of airtime.

Dale sharing his genealogy research

I spent the majority of the trip discussing family history with my Uncle Dale, who has researched with me in Salt Lake and more recently reviewed my brick wall. Dale brought more than a hundred pages of research with him from Denver because he wanted my opinion on his recent discovery. Following the trail I had given him in October, he had finally uncovered the missing link that had hindered my research for more than a decade and had progressed back two generations. One of my proudest moments at the reunion was listening to him share his findings with his siblings. He was really enthused and a quick study. As he was showing off one document, he pointed out some random numbers and remarked, Melissa says this indicates his property. He went on and on and on, detailing my explanation of what it signified and how he should approach the next steps of his research as well as my remarks on military research. I appreciated hearing him tell the family that I really knew my stuff, especially since my family doesn't understand my work.

Rose, Kay, Mom, Dale, Ken & Arthur

Though I spent time with my parents on Wednesday night, Mom was busy with her siblings, leaving James and I to entertain dad on Thanksgiving. It was worth the drive, in order to be with my parents for the holiday. Unfortunately, Kay's health had taken a downturn and she could not travel to Pittsburgh, so my uncle rented a van and the siblings drove to Baltimore to spend the day with her.

James and I returned back home with weekend plans, but the plague set-in delaying our decorating and preventing me from watching football. Through the power of drugs, I managed to see Catching Fire with Becky and Erin as part of our semi-annual movie night though it's a bit of a blur, which means I now have an excuse to see it again. The plague took its toll on me, but I still had a nice holiday with my parents, had James setting up the Christmas tree and taking care of me.

Give and Take

I regularly remark on the give-and-take relationship dynamic because I have been in many situations where I'm the giver and rarely, if ever, is it reciprocated. I do not sustain these relationships with friends and partners but due to family ties, I regularly find myself giving until there is nothing left of me to my family. I have written over the years about my family drama and my tactics for self-preservation yet still question my handling of the situation.

When I visited Florida in January, there was more drama but I washed my hands of it. My sister had not been feeling well and was awaiting test results. Of course, every conversation revolved around this topic and her self-diagnosis. This is one of the reasons I cringe when discussing my health issues. Yes, my health issues affect every aspect of my life, but they do not define who I am. I refuse to use them as a crutch or conversation topic. But my sis enjoys have drama in her life, so I figured this was another issue that she would exploit. Unfortunately, she was diagnosed with a thyroid tumor, but a minute one that could not be biopsied. Her blood tests do not show elevated white cell count, hence it's most likely a benign growth.

My final day visiting, I was completely frustrated by the continuous discussion, especially since I rarely get any support concerning my health issues (i.e., Mich drove me to the seminar, no nap time considerations, and repeated late night phone calls). The perfect ending for me was discovering that my family was aware that sis was dating (when she's not supposed to be) a married man. And when I questioned sis about it, she lied to me repeatedly.

Fast forward five months and I have not spoken to my sis. I received several text messages this past week and finally a post on my facebook page saying she needed her older sister. I should have remembered, no good deed ... After listening to my sis rant for a solid five minutes about needing to see a cardiologist; that she has the same heart condition as our mother; and she's not 35 yet, but her body is falling apart on her, I finally lost it. My irate response had to do with the fact that she has not been diagnosed with anything yet; I've been seeing cardiologists since my 20s and have not received the dreaded diagnosis because there are plenty of other minor things that could cause these issues; and maybe she should consider taking better care of herself.  I received the "you just don't understand" response, which infuriated me. I pointed out that if she had ever bothered to contact me in the past six months, she would know that I've had multiple cardiac episodes, currently take medication to regulate my heart rate and that I've had to make major lifestyle adjustments in order to deal with everything.

At the end of this call, I was left feeling empty. Years ago, I was close to my sister, but now, she is a complete stranger. I listened to her, feeling bad that she is facing this uncertainty, yet experiencing it from a distance. The divide between us has widened to a yawning chasm that runs deeper than I ever realized. My siblings have our parents to support them through whatever crisis develops. I have an amazing set of friends, who have become my family to guide me through the rough times. My family has regularly forgotten to call me for the holidays, where as my friends call or message me with greetings. So I was amazed at how unsympathetic I must have sounded to my sis, but I just felt so completely empty while listening to her and couldn't find the words to demand, when is it her turn to worry about me?

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.

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.

2013 Goals

Many you have commented on the fact that I have not posted on this blog in a while. Honestly, I had planned to continue posting, but life got in the way. Then suddenly, I realized that it is February and I have not even reviewed my 2012 goals or created new ones. As many of you know, I do not believe in resolutions but prefer to set goals for the year. In 2012, my entire focus was on making major life decisions and directing my career. I managed to complete a majority of my goals including buying a house, being promoted at work, heavily researching my family, and joining the UDC. The one goal that I completely let slide was my writing, which has barely been touched.

I know this will shock some of you, but I admitted to myself that I did not have time for RWA so I let my membership lapse. This year is going to be busy and I am committed to my new position, then my new position with the FGS board, and maintaining the new house. This year my goals are entirely selfish. They are entirely focused on taking care of myself and my needs.

1. Dedicate 10 minutes a day to a workout or stretching routine
Since my diagnosis, I have had to give up my hour-long workouts and weekly walks on the trails. In the past year, I have lost the majority of my muscle tone and can not lift heavy items. Hubby and I are discussing hiking in Hawaii for our anniversary trip, but at the moment, I'm not in shape.

2. Dedicate an hour a day to myself
Salon appointments, research time, and writing does not count as part of the hour. These routines used to relax me, but have now become "work" in my mind. This hour means not answering the phone, checking e-mail, or making plans with friends. If I work and it is the only hour I have to myself, the plan this year is to choose myself. Though I love my family and friends, I need my time. As for the calls, on average I receive two lengthy calls a night. Lengthy being defined as more than thirty minutes. Just for example, the other night I had back-to-back phone calls from five different people who all left voicemails that they desperately needed to talk to me. This dominates most of my night, leaving me with very little time to get other things accomplished.

And though I may work my regular job, I have other responsibilities with my outside speaking and the board. In January, I spent five hours on conference calls, hours on email for both of these entities, four days traveling and speaking, and the hours creating new lectures. This is work outside my typical workday. Hence the need for time to myself.


3. Establish a routine to handle my condition
I truly should have a set schedule. One that can be varied from periodically, but one that provides my body and mind with the necessary rest. Since my doctor adjusted my dosage, my sleep pattern has been all over the place I have not been able to establish a routine. I plan to see a neurologist to find a secondary method in dealing with those times that I can not maintain a routine. My current dilemma is my work schedule and life is not conducive for the rigid schedule required of my body. Within one week, I'll break pattern multiple times. I need to find a fix for those times.

4. Spend more time with Erin's children 
Following Emy's health crisis this year, Becky and I made a pact that we would spend more time with Erin's children so that if there was ever another emergency, the kids would feel comfortable being left with us.

So my 2013 Goals are completely selfish. I have chosen my career path and it fulfills something in me, so I need to make everything else work in conjunction with it. This year is all about me adapting to my various new roles, which takes a lot of time and energy, which are two things I lack. I've lost myself trying to please myself and others, hence my decision to make my desires the priority this year.

Perfect Description

Honestly, very few people know my diagnosis because there are too many facets to this disorder and I'm not comfortable with sharing. I have been struggling with my narcolepsy the past few months. One week, I'll feel like an adrenaline junkie. The next week, I'm completely exhausted. One week, I'll go to bed in a timely manner. Another week, I'll spend hours unable to sleep though I'm physically beyond my limit. At times, I try to express my frustration with the situation but I can't articulate how exhausted I feel. When talking to friends and family, many acquaint it with just being tired when it is so much more. And I know people don't realize how insensitive this comment is but my blood pressure rises every time I say I'm exhausted and someone remarks to me that they are exhausted as well. I want to scream, "really?" at them. Julie Flygare, an advocate for narcolepsy research, describes it best on her blog post, Sleep's Choice.

"It’s been said that an average person would have to stay awake for 48 to 72 hours straight before they would feel the same violent call to sleep I experience daily ... Imagine being hungry but denied food for 48 to 72 hours. I’ve never gone so long without eating, but I would expect that the experience would reach dark places of mental and physical anguish. If I spoke to someone who hadn’t eaten in 48 to 72 hours – I wouldn’t say, “I know how you feel” because I missed breakfast yesterday." - excerpt from JulieFlygare.com

I've tried explaining my condition but I lack the words to fully express the everyday obstacles, but Julie has written a beautiful piece on her experiences with the disorder. Narcolepsy symptoms vary in their intensity for each person so I do not suffer through everything she describes, but a good portion of her article could describe me.

Imagine ...

Imagine waking up after the third alarm barely aware that you slept through the other alarms. The mental fog makes it impossible to think so you move through an established morning routine. One that requires your clothes to be already laid out, your work items packed and by the door, and a checklist at the door to insure you don't forget anything. By this time, your meds and initial caffeine-fix have hopefully kicked-in so you can drive to work without confusion. Imagine working through your day aware that if you give a presentation, a tour or get busy with a group, you may deplete your energy and will become shaky and confused. During the day, you may need a longer break but it's impossible to get away or you manage to get down to the sick bay area, but it is not available so you try to manage the fatigue that slows your movements and your mind. 

Or imagine not managing to break free of a customer interaction and being 30 minutes late taking your next dose of medication. Imagine the frustration and despair because this means you will lay paralyzed, unable to move, but incapable of shutting off your mind in the middle of the night, yet you have to put on a smile and return to the desk and close off those emotions. Imagine knowing that all your energy will be spent at work and that by the time you get home you'll be exhausted and most likely unable to enjoy the activities that you like because you only have enough energy to prep for the next day.

Imagine that it does not matter how much sleep you get because you will spend everyday feeling completely exhausted, at times fearing a collapse. Imagine being in a mental fog, confused, or struggling to maintain your thoughts. Imagine your arms or legs tingling before paralysis sets in. Imagine doubting your abilities. Imagine questioning going forward with career plans because your mental capabilities slip at times.

Imagine regularly canceling plans with friends or giving up late nights. Imagine never sharing a glass of wine with a friend because you can't touch alcohol. Imagine being unable to accomplish your bucket list items. Imagine being fully aware of your energy levels, reserves and how you can push yourself yet acknowledging you can't plan for every scenario. Imagine at best, once a week you'll have an episode of utter mental and physical collapse.

Imagine taking an addictive medication in order to get through your day. Imagine suffering withdrawal if you take the medication a few hours late or miss a dose. Imagine knowing that with every dose you are exacerbating a heart condition yet the alternative is unbearable. Imagine fearing catching the common cold because you can't use over-the-counter medications and you'll have to miss work because mixing the meds the doc prescribes causes a scary reaction.

Imagine shame and embarrassment at your failures and your weaknesses. Imagine the fear of letting others down or the loss of control when total exhaustion kicks in. Imagine the insensitive jokes at your expense. Imagine the confusion and lack of understanding from people who will never comprehend the extent of your condition.

Imagine knowing others who have been diagnosed and have lost their jobs, spouses, and friends because people believe you're lazy, sickly, stupid, or mentally slow. Imagine knowing others who struggle with regulating medications, lifestyle changes, and the emotional impact of this disorder. Imagine knowing that one slip in your routine or getting older could cause serious ramifications.

This explains why I am not being overly sensitive about my health, but am trying to deal with a life-altering condition that effects every relationship, every moment, and every aspect of my everyday. My life will never be the same and I have lost some of my dreams and my belief in myself yet I persevere. I have participated in a support group, relied on friends, and adjusted my lifestyle to lessen the effects of an incurable neurological disorder. I am not having a pity party but rather feel the need to articulate my daily circumstances and to stress that I do not feel comfortable sharing my condition with everyone. I have colleagues I work with daily, professional contacts, family, and friends who are completely unaware of my situation. I manage a brave face and only a few get to see the cracks.

The Health Gurus

Last year, I decided to be an outlier and questioned our insurance package at work. I had just experienced a brutal health year, in which our insurance company complicated matters by delaying tests, requiring further tests and analysis, and declining coverage. So when I began to hear the rumors that the entire system would be forced on a high deductible plan and the possibility of losing the system's contribution, I felt the need to speak up. Certain administrators seemed to forget that my former career was as a human resource specialist and that I had negotiated health contracts for my clients, so I began to be outspoken, asking questions about the costs, savings, implications, and the policies, procedures, and accountability for the employee, library, and insurance company. In the meantime, I had meetings with our human resource director, insurance representative, insurance consultant, and library director to discuss my concerns. In the end, our director decided not to push everyone onto the new health package.

There has not been much discussion as of yet on what packages will be offered next year, but one major change involving our health care is an alteration in our wellness screenings and credits. Previously, we would receive credits towards our premium if we met certain criteria during our health screenings. The problem with this system was the standards were nearly impossible to meet, forcing most of the staff to have their doctors complete forms stating the employee was being treated or improving that health "problem." These forms were so convoluted that some of the doctors couldn't complete them correctly.

So this year to earn credits, we must attend the health screenings at work and receive credits for taking a required test, signing a non-smoking voucher, completing a health assessment and meeting with a health advisor to discuss our assessment. Now, I don't mind taking the tests, but I dislike the assessment and discussion. I completed an assessment three years ago and was very frustrated by my session. The session is essentially someone lecturing you, personally, on not meeting the established criteria, but without any consideration to your personal health situation because these consultants are not your doctor. Last time, I was told to lower my stress. People who say this should not be in the health care profession. I was lectured non-stop about my cholesterol levels, which are genetically high. I am predisposed to high cholesterol and my doctor can explain the many ways that we have lowered it over the years and why we are avoiding meds at this time. According to the BMI criteria, I am overweight. This is the one that really makes me furious because a health consultant saying this to a twenty-something girl could lead to eating issues. I am not overweight. I am thirty pounds lighter than my heaviest weight. My body is shaped like a pear, which means I'm tiny on top and exponentially larger in the hip and bum area. I am proud of the fact that I have a curvy body and have learned to accept it, which I believe makes me a mentally healthier person.

So I will attend the screenings and the lecture in order to obtain my credits, but I definitely won't like it. And what I can't understand is why I can't have a physical done by my doctor who knows all my health issues instead. The conspiracy theorist in me fears I know the answer to that question.

A Plea and the Rest of the Story

Dealing with my own health issues is frustrating enough as I hate the lack of control when I wait for my tests or results, but that is nothing in comparison to the helplessness I experience when one of my loved ones is ill.

Last week we received great news concerning my youngest niece, C, who caught the Super Bug 3 1/2 years ago and was in and out of the hospital for months as she recovered. Since that recovery C has had multiple surgeries and has been sick with a bacterial or viral infection at least once a month all these years. A few weeks ago, C had a biopsy along with further allergy and immune system tests which finally revealed that she did not have an immune deficiency but that her health problems are due to being severely allergic to several things that she can't avoid in her daily life. The docs are forming a treatment plan which was great news for the family who has watched her suffer all these years.

Then I received a terrifying phone call from Erin on Friday. Yes, I know some felt I wasn't telling the whole story about the birthday weekend so here is what I can say. This call left me feeling completely helpless. Though my instinct screamed for me to act, all I could do was listen and try to be calm. The story is not mine to tell but I can share what Erin posted on Facebook ... "Please pray for our E. We've been in the hospital since Friday. She is having heart troubles, beating too fast. They have her stabilized now, but still not good enough to go home. Any prayers are very much appreciated!"

During my horrendous procedures, eventual hysterectomy, and subsequent bladder injury, Erin was a lifeline offering support and comfort during a bleak time in my life. Not only has Erin given me the remarkable gift of her friendship, but she has granted me the opportunity to witness the wonders of motherhood through her amazing love for her children. I hate, despise, and detest the idea of Erin and the family suffering, much less baby E.

In this moment of complete helplessness, all I can do is ask that people pray for this sweet girl and her loving family who are also my loved ones.

Open and Honest

Warning: I have agonized over writing this post. I'm afraid some people will think I'm too whiny, negative, depressed or self-absorbed, but finally, I decided that this was my blog and I feel the need to get this off my chest.

Okay, let's discuss the elephant in the room. You know the one. He has his trunk waving in the air as he trumpets to gain attention, so I cave, I agree, I admit it ... I take on too much. There! I finally admit what so many have accused over the years. There is no getting around this psychological defect of mine and it's definitely not a new phenomenon.

This mindset began when I was told to delay going to college due to a health issue, but I decided to live life to the fullest and not miss out on anything. It has grown exponentially so it not only includes social and personal situations but career goals as well. I like people relying on me, trusting me and asking for advice, and knowing that I will get the job done against all odds. I take great pride in these things and would hate to let anyone down though I have said no to some things. But I admit, I am struggling with keeping everything balanced.

I keep hearing that I should give something up or say no to more things, but what should I give up? My work load is demanding because I'm a good worker and I'm looking towards the future, so with that in mind, I have to show that I can handle the heavy-lifting. I've taken outside speaking and writing assignments to further my career, but I have said no or have set boundaries for some of these requests. The FGS committee is a great learning opportunity and career move, but there is a bit of extra work at the moment. Purchasing the house was a right fit at a bad time. I've tried not to get too upset over my brother's spiral (I know that didn't take long) but it weighs on me. I'm helping plan a large event this August because someone else dropped the ball at this late date and so someone else and I stepped in to save it. And dealing with the emotional roller coaster concerning my mother's illness can't be ignored.

I can guilt myself better than most Catholics (I'm Methodist). I feel like I've neglected Mich while she's recovering from her relationship. I've not been as supportive to Dawne as she's struggled with several large emotional situations recently. I have barely kept up with my eldest niece's destructive teenage drama or my youngest niece's health concerns and recent surgery. I've barely found time to check up on Erin's recuperation. These are events in my friend's and loved one's lives when I'm usually more responsive and attentive, but not recently.

On a good day this would be a lot for the average person, but add in my medical condition and this becomes overwhelming. I have felt as if I've barely kept my head above water and now I'm slipping beneath the surface. Periodically, I manage to gasp for air but then another wave crashes over, forcing me under once again. And I can't seem to find a way out of this vicious cycle over the past few months.

I will find my feet once again and hopefully soon, but at the moment, I'm trying to juggle many things and I fear dropping something or hurting someone because I let them down. I've been reading blogs written by others with my condition and it appears many of us describe a sense of failure to meet our own or other people's expectations, a desire to prove our worth, frustration at people's misconceptions or lack of understanding, the continuous struggle to find the best remedy and routine since there is no cure, and the highs and lows of depression that come with being diagnosed with a neurological disorder that forever alters your lifestyle.

Don't get me wrong, I have so many things that make me happy everyday, but I felt the need to admit the truth that so many have tried to convince me is one of my greatest faults. Over this summer, I plan to share several of my "happy" factors because seriously, after I started reading about other people's struggles with this, I came to the realization that I'm handling things amazingly well. Of course, I believe that is due to having the best and most amazing support network.

Mad Mad World

The next few weeks are utter mayhem for me and hubby. I leave this week for California, where I will present three lectures and sit as a panelist for another session. Since I am officially on vacation, I have opted out of attending conference events and plan to only attend lectures and the exhibit hall before the panel session. Though I have a business dinner scheduled at 6:30 pm the evening I arrive, when my plane touches down at 6:15 pm. Supposedly, if my dinner partners order appetizers, the airport is small enough and close enough for me to make it to dinner. I've agreed to this, figuring after 12 hours of traveling, I'll want a real meal. I plan to play tourist during my free time at the conference, though my return home is chaotic. I have two lectures on my final day and will check out sometime in between, then make my way to the airport for the 12 hours of travel back to Indiana. The crazy 12 hours from my home to the conference is the result of a three-leg jaunt both ways.Once home, it's back to the housing grind as we'll be in the final week, with walk-throughs, closing, and acquiring the keys has been scheduled.

At the same time, it has suddenly hit me that my mom is mortal. Though she is doing better on the meds, she has far less energy due to a weaker heart and a dramatically increased chance of having a stroke. I am struggling with my fears and concerns over this situation. While the tests and procedures were being completed, I was able to cope because we were in the action phase and my job was to keep her on track. Now, we're in the coping phase, when the family has to adapt to the changes in her life. For me, this is the time I realize that I could lose my mom at any moment or she can adapt and live a long life, yet nothing is set in stone. I have never truly thought about life without my mother and now that I have, it is soul-wrenching. So I spend everyday grateful for every phone call with her, yet an underlying fear, which I hope will disappear in the coming months as she improves.

With all this mayhem comes loads and loads of stress. A few weeks ago, I had a bad episode, where my body shut down and my mental faculties were almost non-existent. I was frustrated by this episode because I desperately try to maintain my regiment, but no one can be prepared for the damage caused by stress. I read a lot of material about my condition and recently one article had some interesting insight into these episodes as I can never fully explain them. The article claimed that our episodes are the mental and physical equivalent to an average person not resting, napping, or sleeping for more than 40 hours. I found this an apt description because I suffer from full exhaustion, shakiness, and the inability to think straight, much less recall things or fully function, when I am in one of these episodes.

I am trying to focus on one day at a time within my world; on finding a balance in which I can rest and relax; and seeking comfort and help from friends because let's be honest, my world is always crazy even on a slow week.

My List

As many of you know, I have been inundated with several stressful situations recently. It has been very hard to stay optimistic and maintain a sunny disposition when I haven't personally been feeling like a positive person. Today's post is for those who were concerned that I was becoming lost in the quagmire. Today, I would like to proclaim the many things that have made me grateful over the past few weeks.

• My gals - The other week, I felt so completely lost, but after a phone call from Mich and lunch with Becky and Erin, I was in a better frame of mind. I am truly blessed to have these ladies in my life.
• My colleagues - I have several colleagues who are true friends, but I am going to lump everyone together. I have a hard time calling in sick to work, but the other day, I had an extremely rough episode. My pals were understanding that I needed to go home. Even my boss sent me a kind email, letting me know that everyone wanted me to take care of myself. It helps to know that my colleagues aren't upset with me when I have these episodes.
• Mom - My mother was recently diagnosed with a severe heart condition, which has been debilitating to her and emotionally straining on the family. We are fortunate that her meds appear to be stabilizing her condition. And though she will have to retire early, she will be with us for some time to come.
• John - My brother and I have been slowly rebuilding our relationship. It has been a rough process, but he has really stepped up and helped my mom the past few months. He has taken mom to her appointments and when she had an episode, John took care of her, insuring she was not alone. This meant the world to me, to see John finally placing his family first is a miracle in my book
• James - Hubby is always so supportive of me. He has tamped down his fears over the house. He has listened to my tails of woe from the multitude of recent family situations. And he has been supportive of my crazy schedule (work, conferences, and speaking engagements). He makes it easier to balance my life.

A Rainy Sick Day

Day 8, Friday

6:00 a.m. - 9:00 a.m. Ugh, waking this morning was rather difficult. I was quite dizzy and my tummy was upset, which I recognized as my neurological system shutting my other systems down. This was how I felt last summer, as if I had the flu because my organs were not absorbing nutrients correctly. Got ready for work, walked Bartle and cleaned his wound. Got to work 20 minutes early so I could scan some microfilm for my lecture. Unfortunately my tummy had other plans and I spent the next 30 minutes wretchedly sick. Dawne recommended I go home but we had two groups and the Irish seminar. I promised to head home if I continued to feel bad and as long as our other colleague came in. I didn't want to leave Dawne alone.

9:00 a.m. - 3:30 p.m. I managed to push through my shift and had some interesting questions, including a reporter writing an article on the upcoming anniversary of the Titanic disaster. I have a sick fascination with disaster stories and Titanic is one of those that has held my interest since childhood. Had lunch with Becky though I only managed a few bites.

3:30 p.m. - 7:00 p.m. Headed home in the rain, which hadn't let up all day, and picked up hubby so we could grocery shop. As we were leaving the store, monsoon season began. I had an umbrella but it did not help. Both of us were soaked all the way through and when we got home, we had to dry out our groceries as well. Hopped in the shower in order to warm up because with the rain came cooler weather and I was freezing. At this point, I felt completely wiped out and told hubby I needed to take a lengthy nap. When I woke, I discovered hubby had taken care of Bartle, so I could relax for the evening.

7:00 p.m. - 10:30 p.m. I hadn't realized how much I needed someone else to take care of things for a few hours so I could rest. I felt amazingly better during the evening, though my tummy was still a little upset. Hubby made dinner and I read for a bit while we listened to our upstairs neighbors scream, yell, and make other obnoxious sounds. At one point, hubby asked if I wanted to call the police because he thought the girl was getting beaten up. I told him they had been watching March Madness and shouting at the t.v. all week. And Indiana was playing tonight. Hubby groused about this for a bit until I reminded him that I will pay them back in the fall when college football returns. We watched an episode of Supernatural, while I squealed because one of my favorite characters, Cass, returned. Walked Bartle and cleaned his wound before heading off to bed.

Desperately Seeking Sleep

Day 6, Wednesday

5:45 a.m. - 8:00 a.m. Amazingly enough I woke with the first alarm. I have multiple alarms because waking can be difficult sometimes and I fear in my confusion that I will turn the one alarm off and go back to sleep. This has happened before. I ran around getting ready like a mad woman though I had warned my boss I might be late this week depending on how long it takes me to get Bartle settled. I was unsure of his reaction to me leaving him alone with the cone and his poor depth perception. We went for a walk and I cleaned his wound before giving him Benadryl in the hope that he wouldn't go insane from the stitching and rip the cone off.

Normally when I leave for the day, I dip his nylabone in peanut butter and place a treat in a Kong. This keeps him entertained for about 15 minutes and tricks him into not being anxious that I'm leaving. He's incapable of playing with either toy right now, so I dipped a treat in a little peanut butter and placed two smaller treats on the plastic sheet from his former kennel. He tried to get to the treats but just kept pushing them around with the cone. Sometimes the treat would flip up into the cone, but he still couldn't eat it. The whole situation was pathetic to watch and worse, the small amount of peanut butter was now all over his cone and the plastic sheet. I cleaned up the mess and left the treats for him. FYI, when I got home, one of the treats was still sitting on the plastic. Apparently, he gave up.

8:00 a.m. - 3:30 p.m. Arrived at work and an e-mail from Michelle who managed to get internet access in Honduras. It was nice to hear from her, but I was a bit confused when she commented on my lack of e-mails. I had text and e-mailed her before she left telling her my plans to document this week on the blog. Oh well! She'll figure it out when she gets back.

My entire work shift was on desk, so I balanced playing catch-up and helping the patrons, but this left no extra time to work on upcoming lectures. A sure sign that I'll need to do some extra work from home in the next few days rather than watch television. I really need to shake that habit. I had been in discussions with a colleague from Becky's former library about me doing a lecture for their customers. She contacted me to share that they have submitted a proposal to their Friends group to have me do a half-day presentation for them. Yay!!! Becky has offered to drive over with me so she can see her old haunt. And the best part, both of the lectures are ones I am presenting at other events, so no new work, except for the fact I still have to write them. I just need to remind myself to take baby steps.

I did have one bitch moment today. My troublesome colleague loves to one-up you in conversations. It gets real tiresome, real quick. She tried this on me today and instead of being humble, I torpedoed her out of the water, essentially rubbing her nose in the fact that we are on different levels. I haven't done this since she questioned my experience level her first week on the job, but I couldn't back down today. Later, she tried to show-off in an e-mail response to my request for date preferences for a week long program. I took delight when Delia questioned the response and my colleague had to backtrack.

3:30 p.m. - 7:30 p.m. Left work early so I could get home to whatever destruction may await, but instead was pleasantly surprised to find Bartle patiently waiting for me, cone still firmly in place. After a brief walk, I cleaned his wound, which had become rather messy while I was at work, picked up around the apartment, and recognized the warning signs of an episode. I took a lengthy nap, hoping to catch it before I felt worse. Hubby woke me with his evening phone call. He had his annual review, which went well. He'll get another contract, but no raise. If only the economy was better then he'd see a nice increase. Oh well! The tornado alarms went off, so I turned on the t.v. because it looked clear outside. Sure enough, they were just testing the system.

7:30 p.m. - 9:00 p.m. I called mom, who seemed to want to rush through the call, which was frustrating once again. I asked for clarification on my dad's comment on Sunday relating to my grandmother's mental state. Turns out, my grandmother has been officially diagnosed with Alzheimer's. I think anyone in the family could have told the doctors that years ago but they kept saying she had dementia. Apparently she had a severe psychotic episode last week and her hallucinations became extremely unhealthy. She has suffered the typical symptoms of not recognizing her husband or home, feeling paranoia, and talking to her hallucinations. It had gotten worse in the past six months when she began to have odd thoughts concerning inanimate objects. Her recent episode involved some intense hallucinations concerning the bedding which lasted for days. My grandfather has been her caregiver with a part-time nurse, but the doctors have deemed she belongs in a facility.

This is a bit strange for me as I have no relationship with my grandparents. Without going through a recanting of past deeds, I will say I carry the emotional scars of certain incidents. After twenty years of minimal contact, my sister and I visited them four years ago in an attempt to see things from an adult perspective. A few hours later, I had a better understanding of them, though I viewed them as strangers rather than family and understanding them did not make the visit and their deriding comments any easier. I told my dad it would be the last time I visited them, but out of respect for my dad, I would attend their funerals.

After getting off the phone with my mom, I examined how I felt by this sad news that my grandmother was in late stage Alzheimer's and my grandfather was on his farm, alone for the first time in his life. It was similar to how I feel when I see a sad story on the news. I feel bad for them and wouldn't wish this fear or loneliness on anyone, but it does not change how I feel towards them. The person I am most concerned with is my dad and how he is handling everything. I can't imagine watching your parents suffer like this. So I will be there in support of my dad and will listen when he wants to talk about the situation.

I worked on my final SoCal lecture and realized I was missing several record types. This was a big oops moment because they are items I don't know very well, so I'll need to do a bit more research. The end of the month is looming over me.

9:00 p.m. - 1:00 a.m. I spent about an hour reading the Bible and praying before shutting down for the night, which didn't go as planned. I am definitively on the downward spiral. I was choosing my outfit for tomorrow's presentation when I realized I hadn't shut down my laptop, so I sat on the couch to close things out. Two hours later, I was staring at my word document when Bartle got my attention. I had completely lost track of time. I went into the bedroom feeling a bit disoriented to find the light on, the closet open and half of Thursday's outfit sitting on the bed. I had completely zoned out midway through an activity. And now it was late again which meant I wouldn't get much sleep. I took Bartle for his walk and then cleaned his wound and face again.

Laundry Day

Day 5, Tuesday
9:30 a.m. - 12:00 p.m. It is getting harder and harder to get up since my sleep pattern is completely thrown off, but I persevered. Bartle and I began our morning with a lengthier walk, since the weather has been so nice, but the temps are going higher, which means I won't be able to walk him in the heat for too long. I know it will shock everyone to discover that with all Bartle's fur, he is susceptible to heat sickness. We returned home to our last day of painkillers and the anti-inflammatory, cleaned the wound, and tried to force him to eat. Bartle refuses to eat much, which still disturbs me. Began a load of laundry, the first of many, and sat with a book and cup of coffee. I truly did plan to be motivated today, but my best plans get sidetracked real easily.

12:00 p.m. - 4:00 p.m. Called the doctor for my yearly test results. No need to worry, everything is normal. The gals and I had recently questioned why my doc had ordered a pap test this year considering I no longer have a cervix. This led to a humorous conversation since a few of my friends didn't realize that was removed during my hysterectomy. The nurse explained that since my hysterectomy was due to a cancerous condition, the doc prefers to do a pap test because it can detect cancerous cells on the vaginal wall. I was relieved to hear that he was being extra cautious rather than him forgetting he had performed the surgery or not realizing the body part was missing during my exam. I can't help thinking this way after my last two former primary care doctors continuously ordered pregnancy tests. Once that was done, I hung out with my friend, streaming television, instead of working. At this point, I was on my third load of laundry and didn't want to acknowledge my wastefulness of the day.

4:00 p.m. - 6:00 p.m. Jumped in the shower and took Bartle for another walk, in which I regretted showering since I felt grimey upon my return. I moved away from Florida for many reasons, one of them being the heat. Another cleaning of the wound and Bartle was ready for a nap. I finished the last load of laundry and focused on my lecture. I honestly, didn't get far with it because viewing the changes to the powerpoint on my netbook is difficult. I'm beginning to realize I may need to go back to the eye doctor. I recently noticed that my presentation notes were becoming difficult to read at the podium and on Sunday, I had trouble reading Kris' bio when introducing him. So I decided to watch more t.v. instead. I know, it was not the best game plan since there is a huge to-do list waiting for me.

6:00 p.m. - 7:00 p.m. Delia called to check up. Apparently she was concerned because I had written that I had cried the night before. In the past few months, my emotional state has been tricky. I've been overwhelmed by my concern and frustration with my family then feelings of neglect and isolation followed by guilt then more neglect, which is compounded by my frustration at not finding the right balance with my diagnosis (which I have recently found), and my concerns with Mich and the changing dynamic of our friendship. On top of all those stress factors then there is my increased work responsibilities and the thought of where it is leading. So I've been a bit emotional and trying to find my place. I truly am blessed in my friends and pseudo-family that I have created. They are wonderful people. Talked to hubby who reminded me I had promised my boss I'd review some photos, so I was on to another task.

7:00 p.m. - 12:30 a.m. Our home laptop's operating system died a few weeks ago and all of our backed up files are on the external drive, which stores all of our photos. I went through the files searching for high resolution pictures I've taken of the department that my boss can use for our new brochure. This took a while as I have a lot of pictures. Erin texted to say things went well with her ultrasound and so far, it looks like she's having a girl. I am truly happy for her. Erin is such an amazing mom. Took Bartle for another walk, cleaned him, and prepared for bed. As I started to drift off to sleep, a loud crash in the kitchen woke me. Turns out, Bartle had finally decided to try to eat, but his cone had toppled the food bowl, sending food every direction and the water bowl was knocked on its side, spilling water under the washing machine. He was hunched against the cabinets, appearing scared, so I comforted him before cleaning up the mess. And finally managed to get to bed all the while questioning if I would wake with the 5:45 a.m. alarm.

Time-Sensitive

I've been very conscious of time recently. I have a lot on my plate and can't ever seem to catch up. Honestly, there are days I look at my to-do list and feel like I'm drowning. I began to note my time wasters to see where all my time goes. And it struck me that there truly is not enough time in the day for my needs. With my condition, I require anywhere from 8-9 hours of sleep a night. There is a noticeable impact on my mental capabilities with 7.5 hours. This doesn't include if I burn off high levels of energy and require naps during the day. Essentially, a lot of sleeping happens in my life. That leaves roughly 15-16 hours to live my life. On a workday, I wake a little before 6 am, get ready and go into work. I return home around 6 pm on a normal day. Well that is 12 hours gone, so that leaves me with 3-4 hours. But once you add in making dinner, eating, walking the dog at minimum three times a day, spending time with the animals, cleaning, laundry, etc. How much time is really left for me to socialize, write, knit, research, read a book, talk on the phone, or watch television? I really have run out of time.

The Diagnosis

Yesterday was D-day, the day I finally received my diagnosis. I've struggled my entire life with fatigue of some sort, but it all became too much earlier this summer when my body gave out on me. Not only was I exhausted, but my mental capabilities were impacted and I felt like I physically had the flu, with weak and achy muscles, for months. I've had almost weekly tests for months that seemed pointless along with several, misdiagnosis. It had all gotten to the point where I began to question myself. Was this normal? Was it because I was getting older and now feeling it? Was I depressed? Was it all in my head? These thoughts have run through my mind and I almost gave up on finding answers or ever feeling better again.

After being diagnosed with anemia and placed on a high dose of iron, I felt 50% better. It was such a relief, but they still couldn't explain my symptoms. The doc sent me to a pulmonary specialist who met with me for 2.5 hours. That's probably the longest a doctor has talked to me before. After going through his in-office tests and interview, he said I required a sleep study. I scoffed at him and said I didn't have sleep apnea, which was one of the possible issues according to previous docs. He agreed with me and went on to thoroughly explain what he was looking for in my test and why, so I agreed to the test, still unsure.

All of this is my long way of explaining why, yesterday, as he started to explain my test results, I nearly cried. I was finally relieved. Here was physical proof, actual brain wave activity, which shows I have a neurological disorder that explains all of my symptoms. Though there is no cure for my diagnosis, there are medicines and life style changes that can help with my symptoms. I was finally diagnosed with narcolepsy. According to the doc, it takes a human an average of 90 minutes to enter REM sleep, whereas my brain enters REM within 1-5 minutes after I fall asleep, so overly active brain, all the time.

So yesterday, I sat in the doctor's office, feeling such an overwhelming sense of relief that I finally had answers. I finally had proof and a diagnosis that something was wrong. I know it may sound crazy to other people that I was relieved to be diagnosed with a disorder, but after months of questioning myself, undergoing numerous medical tests, feeling miserable, and suffering misdiagnosis because the docs couldn't find a real answer, I finally have a real resolution.