Wednesday, December 30, 2009

Decided to add my posts from my chronic fatigue support group journal. It's interesting that I actually get a response from my virtual friends. My friends and family in the here and now world don't comment on my blog. That's why I love my support group. People there have helped me a lot because they know what I am going through and that I need to vent once in a while.

I have actually been doing okay lately. Whatever "okay" means. For me it means that I haven't had flares in the extreme that totally knock me out. Doesn't mean an absence of pain or fatigue.

I can say things to my CFS friends without having to apologize and they know I'm grateful for the little things without my having to qualify everything I say. They even tell me how much I have helped them and that makes me feel like I am worth something. One friend told me I saved her life one day when she was feeling like completely giving up. I think our group helped her hold on.

Anyway, that is where my writing has been. Plus, I have a journal that I kept through the spring and summer in a regular old fashioned notebook. I kept thinking I needed to put everything together in one place. At least it's here or in my notebook. I need to print this stuff out.

I actually sent an application to teach at the new community college here in Boise. Don't think I'll have the energy to teach, but there was a part of me that wanted to try to be "normal", I guess. I don't want to miss Abby's and Reed's games and meets. Time goes by so quickly and I have such limited energy that I don't want to give up the time I have watching them. I thought I'd try just to see...

Grateful for the things I can do each day. Curious about why the pain comes when it comes and what I've done differently when it isn't as bad.

Tuesday, September 29, 2009

Sick. Sicker. The sickest I've been for a while. Is it allergies? Inbalanced hormones? CFS on the run? A little bit of flu? YES! It's the jackpot! I win the prize. Whatever it might be, I'm pretty sure it certainly IS.

Coughing, coughing, and all the weakness, dizziness, upset stomach, and any other of my CFS symptoms in their finest form.

Okay, so last week I was feeling sorry for myself and sad about being sick for so many years and telling myself how there are so many people who are worse off than me. Reminding myself to count my blessings. And then, a grand dose of perspective. Sicker than a big dog. Only to remind me AGAIN that I have to be oh, so grateful when I'm feeling half alive.

Half alive is apparently a good thing. I need to remember that. Because dead to the world is much less fun.

P.S. I can't believe there are women mourning the loss of their period and dreading a life of menopause. Honestly, perimenopause is the worst! Estrogen bouncing all over the place, or not bouncing because it's gone. Give me a break! I look forward to the end of all of this estrogen-progesterone battle. Seriously. Then again...there is always perspective lurking around just waiting to teach me something new. And, to that I say, "Hormones schmormones."

carry on!



Wednesday, October 21, 2009
How is it physically possible to not sleep. I can be exhausted and weak and still not sleep until maybe 4:30 in the morning. Last night not at all. I marvel at the idea. If I was a prisoner of war and my captors tried to torture me with sleep deprivation the joke would be on them. I would laugh inside of myself and watch them squirm trying to figure out how I could stay awake night after night. I don't know how it's possible and it's me.

One night I loaded up on everything in my homeopathic arsenal of sleep aids and still remained awake. I started early in the evening trying to prepare myself for some form of relaxed restfulness. Not to be.

I remember seeing an episode of Star Trek the Next Generation when the crew was suffering from sleep deprivation and were having all kinds of hallucinations. I haven't been entertained with this bizarre side effect. I just have swirling thoughts that swim around when I'm trying to figure out what to do with my mind when my body won't sleep.

I just ordered a couple of other homeopathic remedies that might help. Have to keep trying. I just laid in bed this morning as the light started to come into the room and wondered if this was really my life. I forced myself to get up. Now I just drift. I'm too tired to be of much good to anyone. Here I go to do the best I can to hold and try to do a little something here or there, then rest, then maybe a little something else.

I wonder what information my captors are trying to get out of me...


Friday, November 6, 2009

Waiting for my daughter to get home from basketball practice to go renew her driver's license. She just turned 18. I realized something during volleyball season. I felt a lot of anxiety that was more intense than other years/seasons of sports stuff with my kids. I think part of it was related to a hormonal imbalance, but part of it is something more. I think part of it was realizing that she is a senior in high school and I'm wondering what I will have to push me when my kids are all gone from home. I have three kids out of high school, my daughter that's a senior, and a son that's in 8th grade.

I feel like I push myself through pain and force myself to get to their activities and I think there is underlying fear of what I will have to motivate me when they are gone. What is as powerful as my love for them that will give me the incentive to push through the pain to actually leave my house? There is a fear, I think, of the potential for even greater loss from this illness. And...I don't want to have to go through more loss. I'm basically a wimp.

I have my sunday school class and other church things that I do, but it's hard to explain the different kind of motivation. I think there's a difference between spirituality and doing church stuff. There's only so much I can do in that area. It's different than just going and sitting at a ballgame. I'm not sure I've explained myself very well here, but so be it.

I guess the bottom line is that I'm working on not letting fear have so much influence on my level of anxiety. I have to remember to focus on one day at a time and not think too much about what I will or won't, or can or cannot do in the future.

"Sha na na na na na live for today, and don't worry 'bout tomorrow, heeeeeeyeyeyey"

carry on.

P.S. Where does anxiety come from? I know it's in the amygdala (part of brain) and that's the same place where fear is, but it's just plain weird to feel it. I know all the intellectual counterarguments to my feelings, but man, when anxiety hits it is unreasonable and unbearable and just plain strange and often frightening.


Monday, November 16, 2009
This month is my eleven year mark. It was November, 1998 that I got sick. What a horrible anniversary?! I don't think I could have ever imagined that I'd be sick for this long. What's it like? It's just painful, that's what it's like. I think losing hope is the worst part of the pain.

To celebrate my anniversary I have been sicker than I can adequately describe. My period hit flambastically hard. (I like to make up words.) Cramps that kept me from walking upright and my CFS symptoms through the roof. Wait, I'd like them to go through the roof but they stay inside of me, so that was an incorrect description. The point is that I have been in bed a lot. Missed a lot of life. I've spent 11 years trying to convince myself that the things I'm missing aren't important, but somehow I still care and feel miserable about having to be sick all of the time. I still care about not getting better. I still care about what this illness has taken from me. I still feel pain about not wanting to continue if this is really all I have to look forward to. How can I keep making this be my life? Only because I don't have a choice.

I feel so weak. Why am I not strong enough to push harder? There is no physical strength to even stand up for any length of time without feeling light headed and dizzy. Where the heck does this crapiola come from? (more fun with words) I find myself apologizing to the air around me. As if I've offended the space for being in it.

I realized most people would go to the doctor for the kind of pain I've had this past week. After 11 years I don't go to doctors anymore unless I really, really, really have to go for something that I think there might be a slight possibility of assistance available. I've endured a lot of pain.

Lately, I've been struggling with a sense of purpose. I wrote a book about what I've learned from living with this illness. About 300 pages. The few who have read it say it is very insightful and could help a lot of people. It sits on a shelf. I don't know what to do with it. I realized that perhaps my voice has changed since I wrote it. It took about 2 years to write it. I think my voice is now weaker and not as hopeful. This illness keeps taking away more hope and the book is about hope. haha

It isn't a happy anniversary. That's for certain.

carry on.


Friday, December 4, 2009 | A General Update story

woohoo it's frozen pizza friday. I always like it when I don't have to try to think about dinner.

I actually made slip covers for two old loveseats that turned out very nicely. Sad that I can't afford new furniture but happy that I can sew and found a fantastic deal on fabric. What used to take me a day (creating a pattern, cutting out fabric, sewing) took three, but who's counting?!

I had to add some foam to one of the 20 year old love seats but it feels very comfortable now. Even the dog must think so since that seems to be where he likes to take his mid-day nap. I'll have to add the 'before and after' pictures I took. Gotta take the time to figure that out...

It feels so good to actually be able to look at something and tell myself that I did it. I created it. It's been so hard for me over the years to feel a sense of purpose and accomplishment when my daily routine is so comparatively limited. I've had to repeatedly try to convince myself that individual worth is not about what a person can do, but rather what a person has in their heart. How come that is so much easier when I evaluate other people but not so easy when it comes to how I feel about myself?

Just purchased some polar fleece on a super sale to make snuggies for my kids for Christmas. Every now and then I start to panic about finances and debt and life but if I can avoid dwelling on it I feel much better. I have the most fun when I fantasize about having everything taken care of financially. It's a delightful escape from reality.

It's also fun to think about how I made two slip covers (custom fit) for less than one stretchy, plain colored, ill-fitting store bought cover. woo hoo. And, I'll make five snuggies for a little over half of what I would have to pay for them in the store. woo hoo

And to think, it all started with 4-H in about third grade when I learned to sew and made an apron for the county fair. One more time -- woo hoo!

carry on.


Feelin' fat

Saturday, December 26, 2009 | A General Update story

I don't get on the scales much but my clothes are shrinking. It must be the dryer or I'm gettin' fat. I have been eating too much sugar at night. Weird cravings, or really more of an intense desire for chewing. Yes, I chew the sugarless gum and suck on sugarfree candy, but there is still a need to eat when I'm not hungry.

I pretty much blame it on perimeno-crap--o-pause. Hormones can screw up the metabolism like a light switch being turned on and off. I'm puffy in the morning and it takes most of the day to lose the water my body is retaining. Yes, I drink lots of water.

I feel puffy and bloated and fat. It's a strangely soft and round experience that is disconcerting. Extra padding that I'm not used to. Where did it all come from?

I just checked the menopause support group and checked on posts about weight gain. Lots of women talking about gaining weight around the middle. CHECK. They also say that it doesn't come off no matter what they do to try to lose it. Say what?!

I'm not entering any beauty pageants but that doesn't mean I'm happy about this explosion of puffiness. Vanity? Not so much. Comfortable clothes? Oh, yes, that's what I'm talkin' 'bout.

Stretchy pants for every occasion.

Carry on.

Wednesday, July 29, 2009


Satan is referred to as the adversary. So, what does Satan have to do with adversity? Is adversity simply opposition? If so, then adversity is only adversity if a person perceives it as such. It must be opposite to what a person expected. Trials, challenges, etc. are simply opposite to what we had thought or believed would happen; or, opposite to what we have been taught to believe or expect to happen. Adversity is adversity because it is opposite, or different from something.

So, we look into the lives of others and label their experiences (pioneers, martyrs, etc.) as adversity when it may very well not be. If they did not perceive it as such it could not be defined as adversity. Did it have to be opposite from what they expected for their situation to be considered adversity to them?

We have to have meaning for suffering. We have to put labels on people and situations to provide motivation or inspiration for our own challenges. Is that it? We read or hear a story and affix our labels when perhaps those labels are quite false indeed.

Is Satan's only weapon his ability to be opposite? Is he clearly opposite? Perhaps more so than people will admit...

carry on.

spirit in two or more places at once?

Is it possible? When I feel disconnected - a floaty feeling I can't quite describe - could my body be here and my spirit be in another dimension? It's such a strange feeling - And I wonder about the consciousness of my spirit - or what my spirit knows (because of its existence BEFORE earth life with body) - It knows, must know, things I'm not consciously aware of; so, then isn't it possible that it could be or do things dimensionally that I'm not aware of? My spirit knows what it's like to be without a body, but my body doesn't consciously know what it's like to be without spirit and that's what the weird/strange feeling is - is it possible to be conscious without spirit? No? So, can thoughts be physical - of the body alone? I guess not or we'd be dead, or?...

That was written several months ago. I just read a book this week about synchronicity of the soul with the universe. At one point the author describes what he believes to be the two parts of the soul - local and nonlocal. The local soul is our individual essence and exists at the quantum level and our nonlocal soul is part of everyone and everything and exists in the virtual or spirit level. I wanted to change some of the authors terminology and plug his concept into the plan of salvation because he was talking about things that made sense from an ethereal perspective. His point about our local spirit existing at the quantum level made sense to me.

A quantum leap is a change in status from one set of circumstances to another that takes place without passing through circumstances in between. When an electron is in orbit A and the next moment in orbit B there is no traveling through the space in between. It's simply there. Even though this author had a definition of the soul that I didn't totally agree with, I couldn't help but wonder if this was a possible continuation of my thoughts about a spirit being in more than one place at the same time. A sort of quantum leap between dimensions would make sense to me.

carry on.

Friday, July 3, 2009

What's in a lifetime?

I can't believe I haven't written for so long; and yet, I have a notebook full of scribblings for the past two months.

I just got back from visiting my 87-year-old dad and 90-year-old stepmother in St. George, Utah. They will be married six years in September. One of my favorite parts of my visit was swimming laps in the pool at the subdivision where my dad lives. I was always alone in the pool and it was fantastical. smiling. I think I should have been a swimmer. I'm a good swimmer. I love how it feels, how it sounds, how it relaxes me to float on my back when I'm done swimming. When I used to work as a lifeguard the owner would sometimes let us swim after hours and I would float on my back and look up at the stars. It was a hot springs out in the middle of nowhere; or, Haines, Oregon, if you know where nowhere is.

It was interesting to go with my dad and Ettie to the assisted living center where they have just been assigned to help on Sundays. I looked around at the 15 or so elderly people and thought about all of the incredible life experience in that room. I wonder what those people's lives had been like and what kind of wisdom they could impart.

What does it mean to grow old - living beyond what people did in the past? Will we care for people with dignity and respect? Consider what it means to age and live beyond...

I couldn't help but see that the better-abled old were caring for the less-abled old. Why do people age differently? Why is one healthier than another?

I couldn't help but wonder what my life would be like. How long will I live and how will I live?

I looked around the room and wondered about people's past lives. Each had a
lifetime of prayer
of trusting God?
of faith
of challenges and
wonderings of how God works.

A lifetime of relationships
all kinds of experiences
and many, many different choices.

*How have they come to understand how the Holy Ghost works in their lives?
*How have they come to recognize and feel the power of God in their lives?

I thought about talking to each of them but communication is a bit of a challenge, and I'm not sure how cognizant all of them were. It still doesn't take away from their life's mission and experience.
What do they think about?
How do they feel?
What is their purpose in their infirmity?
How do they see their past life and present situation?


I asked dad and Ettie the two starred* questions above. It was interesting to think about how they related experiences at different points in their lives, and I thought about how we might give up on God when He is waiting to speak to us when we are 65, 78, or even older. Something to consider...

There were three dining tables and each one had a quote in a plastic frame sitting in the center. I wrote down one of the quotes from Joseph F. Smith.

"The test, then of our soul's greatness is rather to be sought in our ability to comfort and console, our ability to help others, rather than our ability to help ourselves and crowd others down in the struggle of life."

And, there you go.

Wednesday, April 29, 2009

american idol

Okay, so, American Idol host Ryan S. makes a big deal about how AI is the number one show in America, blahdee blahdee, blah, blah... Good grief! Why don't they pay for more royalties so the singers can sing new songs. They just keep recycling songs year after year. Give me a break. It's ridiculous. Simon C. makes like 45 million a year for doing the show - I guess that's where all the money goes - to the judges. Even more ridiculous.

crazy world (mad world)

carry on.

Sunday, February 22, 2009

Chronic illness

It's only 12:30 a.m. which is not that late for me, I guess. The sky is a strange color out on the horizon tonight with some deep purple tint to it. Unusual. It's been raining, but the rain has stopped. No stars. Too much cloud coverage directly overhead.

Some days are worse than others, but most nights lean toward pain quite heavily. I'm wondering if it isn't a bit easier though because I don't have to meet expectations from myself or others when it is dark and late into the night. I feel my pain and weariness but there isn't worry of anyone else who might see me so there might a bit of relief in that feeling that isn't present during the day. I'm not sure relief is the best word to describe this, but perhaps it works to a certain degree.

I just saw an episode of House where the patient was a man with chronic pain and he told the doctor it was easier for him (Dr. House) to live with his pain because he didn't have to put on a brave face for a family. Something to think about, but alas, pain is pain.

I just started reading a book about chronic illness and the author said that he thinks "acceptance is poison". I'm trying to find the passage in the book, but I can't in the amount of time that I can focus. My head hurts too much to keep looking. The author interviews five people with illness but so far I've only read about two of them and they have terminal illnesses, which is different than chronic, at least I think so. Terminal is chronic, but chronic isn't necessarily terminal.

He does a good job capturing something sensitive to me in the introduction. This is a lengthy passage, but it's true for me. (Strong in the Broken Places, voices of illness, a chorus of hope, by Richard M. Cohen)

"...With chronic illness, every facet of a once-robust life is overtaken and redefined. From the ability to find and hold jobs to the capacity to build and sustain personal relationships, the facts of a sick person's world change dramatically. The slow slide down carries us, and we lose control.

Still, we go on. We double the effort, for what is the option? Too often, we remain silent. We are a hidden population, invisible except to ourselves and those who love us.

...We have so much at stake and so much to say, but it can take years of battle with our own demons to recognize the power of what we have to offer one another. Nobody will speak for us with the authority we bring to our own stories. Where so many among us find the resolve and the inner strength to rise up and keep going is a mystery to me. That we do serves as pure inspiration."

I wonder if we are only an inspiration to ourselves (meaning our community of the ill) since others don't know what it is there is to be inspired about.

My book sits on the shelf. I pulled it out yesterday and started to scribble a little bit in the margins. I did a bit of research to see what else is out there that would be comparable to what I have written. What I have is fairly unique in the format that I've devised. Yet, my book sits on the shelf. I have chronic fatigue after all. My world is small. I have no network. Most of the books that have been written about CFS are by doctors or by people that have recovered. Makes sense. The rest of us lack the energy to go through the process of trying to get published for the first time, or so it would seem to me. Nevertheless, I'm "pure inspiration". ta da!

carry on.

Thursday, February 5, 2009

Life's choices

When we were living in Layton, UT a builder gave us tickets to Parade of Homes one year. I remember driving in a neighborhood with big homes and seeing young couples out in their driveways with small children. I wondered how they could afford so much when they were so young. Maybe they could, I don't know their individual situations. I just couldn't help but marvel at what I was seeing.

We lived in apartments for seven years after we got married. The only way we were able to get into our first house was because there was no down payment involved. In fact, when we moved from California to Layton we lost our deposit that we had put down on an apartment after we found our house. I remember debating on and on throughout the day trying to decide if we could afford a house payment that would stretch us to the limit. We dove in. We built up equity over nine years - put in a yard, fence, finished the basement, painted and replaced carpet, new roof, etc. We used the money we made on that house to purchase the land we our now living on.

We then built a house that is too much for us, though at the time I trusted that it was part of what we planned for. What if we would have done this, or that? I don't know how life would have been, or could have been. There is no way to know how things would have been otherwise. I certainly didn't plan on getting sick in 1998 when we signed the papers to close on our property, and then leave pretty much ALL of the house building decisions to my husband. If we had to build this house over again, I would certainly do it differently. In fact, sometimes I think I could live very, very simply if I didn't have kids to think about. (Yes, there's a good argument against that statement. Feel free to take it up.)

Bottom line: we make decisions based on the information we have at the time and with the life experience we have in that moment. I don't know how people say they have no regrets in life. I have regrets. There are decisions I made in the past where I wish I would have had more insight to have made a wiser and more prudent choice. But, that's life. We learn from our mistakes. And, sometimes our mistakes plague us for a very long time.

I still wonder about those young couples. We had a blip of time when people could get married and buy a house, have two cars, all the appliances they wanted, etc. and not even blink an eye. Now we are trapped in a world of work, work, work and people may not be able to afford everything they want even when they are working beyond full-time. It's interesting to consider that I'm one of those "old" people who can actually put a few years' worth of life into a perspective of decades. I need to respect that about myself. The sad thing is that one could think that I would be past making any more mistakes in life because I have a few years' of decision making experience under my belt. 'Tis not so.

Carry on.

Saturday, January 31, 2009

Reducing Debt

So, I was flipping past KBYU and pressed the info button to see what the speaker's topic was and decided to stop for a minute to listen to the man talk about debt. I don't often stay too long because the speakers for education week talks are often pretty boring (just my opinion). Which is weird to me because so many people rave about how wonderful Education Week is and I wonder why they don't televise the talks that are "so amazing". Anyway, this guy started talking about something that I had wondered about in the past. He said Utah had the highest rate of bankruptcy in the nation and I knew this, but I did not know specifically why this was the case. So, I put down the remote to listen and learn.

He said that people qualify for loans they can't afford because tithing, missionary expenses, etc. don't have to be included on the loan application. If a person had to put down that they spent $375 a month for a car payment they might not qualify, but they don't have to put down that amount for a missionary expense, so they "qualify" but cannot "afford" the loan which leads to bankruptcy. Hmmm...this makes some sense. There is still the job loss, medical bills, divorce, etc. problems that every other state has, but I wondered why Utah was different. Now I know.

Then, I thought to myself...... flip it. If you flip this concept it says something about our national debt. A stimulus package is supposed to benefit low-income people, but there are people that may not "qualify" for benefits because on paper it appears they can "afford" to pay their own way, so they don't receive help. Yet, some may still lose their house because of poor health, divorce, pay cut, or something like that. So, who gets help? Who decides who is eligible for benefits? The difference between who "qualifies" and who can't "afford" a loan can be flipped into the difference between who can seemingly "afford" and who can't "qualify" for benefits.

{The sociologist part of me thinks: Relative and absolute poverty. Are we only poor in relation to what we think we need?} The speaker went on to say that we can't pay our way out of debt. If we think, "If I just had more money I could get out of debt," we most likely won't get out of debt. We have to reduce expenses. There is no other way. I wanted him to give me some magic to getting out of debt, but he gave me the sensible, responsible, and only answer. No magic.

He also said that we are spending money on things that didn't exist ten or fifteen years ago; cell phones, internet, satellite, etc., and I realized how that is always the part of my budget that I question when I think about cutting back, but I don't see how to get rid of something that we have become accustomed to believing that we "need". And, then I thought about how there will be more to come. There will be more technology that we think is necessary to have and that will be added to our budget even though we can't "afford" it, but we think we "qualify" because we are entitled to have what we see everyone using. How do we expect people to cut back their expenses when they feel like they need what they can't afford?

How do we expect people to get out of debt when the country itself is clueless as to how to do it? Instead of telling people to go without certain things, we print more money and talk about bailing out corporations and try to find other countries to pay the interest on our loans (essentially we are taking out another loan on our loans), and telling people that they'll have a job and their taxes won't go up and higher education will be affordable and you can have whatever you want when you want it because this is America, the land of the free and the brave! If the Education Week speaker is right, we're going to have to somehow find a way to reduce expenses. It's the same thing I have to do every month when I look at my budget and wonder where I can cut back. Maybe it isn't about more, more, more. How can it be? China recently said they weren't interested in buying into the interest of our loans anymore. It's like the spoiled kid whose dad cut off his allowance. Now what?

It's a mess. I don't have the answers. World-renowned economists don't have the answers. One Education Week speaker has a suggestion: if you want to get out of debt, reduce expenses. Now, who's going to teach us to learn to go without?


I went to the eye doctor on Monday. I was looking at the chart on the wall with all the parts of the eye labeled and I wondered... You see, I had just been reading, and two of the books I had read in the days before had characters that gave me some mysterious questions to ponder. In one book (A Gracious Plenty, by Sheri Reynolds) the protagonist was the caretaker at a cemetery and she could see and talk to the dead people. I need to mention that the author presented a fascinating concept of life after death in this novel. But my pondering is about the ability to see beyond the physical world and if it might very well be possible to explain how this is possible scientifically.

I was with Elsina when she went to get her Lasik surgery on Thursday and I was looking at the same eye poster on the wall and the tech-dude said there were a million-plus nerves between the eye and the brain. I'm thinking it wouldn't be too far-fetched to consider that one or two of those nerves could be triggered to see beyond what we ordinarily see.

The other book is The Illuminator, by Brenda Rickman Vantrease (A pretty good read about the 1300's and John Wycliffe's influence on people's perception of their relationship with God, through priests and otherwise. The Illuminator is the artist that painted the fancy lettering and edging for the translated verses of scripture. John Wycliffe was translating scripture into English for the common man.) One of the characters in this book had the ability to see auras around people. One very gruesome man had no light around him, meaning he basically had no soul. She knew when someone was pregnant because she could see two lights around them and the color of the lights had meaning. Once again, I wonder if it's possible to attach a biological explanation to this "gift". To me it seems quite logical that a simple twist in the wiring of our brain's connection to light, reflection, refraction, as well as a finely-tuned, ultra-sensitive awareness to one's own spiritual feelings could very well provide evidence for the reality of such "gifts".

Watching Elsina's procedure was fascinating! I just turned 49-years-old and I remember when contact lenses were a big deal. The technology was star trek at its finest. Remember when the doctors on Star Trek would just wave their little machine over the body and heal people? That's pretty much what happened here. We have this amazing technology and yet we still have mystery. What would life be like without it?

Wednesday, January 21, 2009

I did it! A picture on my blog. More?