August 2, 2008

August 1, 2008

  • a month of home comforts





    Things seem dreary, here, on my blogs, so ... I've decided to do 'a month of home comforts'. 

    I'm going to try and post a home comforts photo each day for the month of August ... inside, outside, upside-down.  It doesn't matter as long as it has something to do with life here on the one spot on earth that our family owns.

    Please feel free to join me, although I realize that a lot of you post these kinds of photos, already, on a daily basis.  If you decide to join, let me know so that I can throw up a link to your blog or your flickr.  You don't have to take/post photos every day to join. 

    You can visit my home comforts set HERE or view the entire group's set (meaning OTHER PEOPLE'S PHOTOS) HERE.

  • who said i like rollercoasters?!





     

    This week has been a ride.  Like a rollercoaster.  Only, I don't like rollercoasters. 

    • Theother23 is on his THIRD WEEK away from home.  One to go.  Maybe less.  HOPEFULLY less.
    • My SPS flared up.  Badly.  Activities of daily living, like driving and walking and eating and sitting and laying down, became near impossible. 
    • The beater bar on my Dyson stopped working ... in the middle of THIS.  (I won't even comment on Dyson's hose-collapse syndrome.  Another time, maybe.)
    • Hell-fire-jungle-heat. 
    • My internet service provider was mostly DOWN yesterday ... the day that I had two million things to do on the internet. 
    • Today, I still have those two million things to do on the internet, am supposed to start on baclofen (mostly used for MS), have fifteen dozen errands to run (only I can't run), and would really just like to STAY HOME, have food delivered, and SEND MY CLONES TO COVER FOR ME.
    • Also, must remember to invent clone machine. 

    Oh, but, hey ... it is Friday.  Which, makes absolutely no flipping difference in my world. 

July 31, 2008

July 29, 2008

  • those rascally rabbits





    Have you ever written a blog post just to move the previous post further down the page?  That's what I am doing now because I feel very uncomfortable, um, HAWKING MY WARES. 

    So, I'm going to do what I generally prefer not to do, and that's just ... write on a whim. 

    Here is what is on my mind ...

    • I am really in love with "Iconoclasts", which airs on The Sundance Channel.  I can't believe that it took, like, three seasons for me to discover it.  Sometimes, I am a wee-tad slow.  If you have a little free time, watch some of the videos online.  You can't see the full episodes, but the "celebrity" pairings are amazing and, sometimes, unexpected. 
    • Did one of you recommend "Party of One: The Loner's Manifesto"?  If so, THANK YOU.  I love the book.  I might blog about my thoughts on the topic when I'm done reading it. 
    • The photos in this post?  They are from last year, midway through the local bunnies' destruction of my cilantro.  This year?  I didn't get a photo, MUCH LESS A SPRIG, before the plant completely disappeared. 





July 28, 2008

  • four seasons is MORE than enough, thankyouverymuch.





    I like to think of myself as calm, cool, and collected.  I don't worry about things.  What good will it do me?  I don't fixate on negative possibilities.  That doesn't accomplish anything.  Something bad happens?  It is what it is.  Learn my lesson, if there is one, and then onward and upward. 

    That said, stress just rolled in like it thinks it's a new goddamn season or something.  Autumn, winter, spring, hell-fire-jungle-heat-summer, and STRESS. 

    Muthaf-----.

    Instead of thinking about ess-stray, I like to keep usy-bay.  Really, really USY-BAY.  Really.  To help me out with that, I am having an impromptu PRINT SALE. 

    (About six months ago, I stopped selling prints because I have some things going on behind the scenes in regards to the process of selling photos.  For instance, I want to find a new photo finisher, preferably locally, and I want to revamp my website, which would make the process of selecting and ordering a print much easier for both the customer and myself.) 

    It will work like this:  For the next two weeks, I will be taking photo orders.  On August 12th, I will buy the prints en masse, which means that they will be mailed TO YOU in approximately three to four weeks (end of August).  Photos will be sent via USPS Priority Mail.  I prefer PayPal (credit card, e-check, or PayPal funds), but I will accept personal checks as well.  Shipping is included in the purchase price.  (I feel awkward even typing this ... )

    Most photos are available in 4 x 6, 5 x 7, and 8 x 12 (or 8 x 10, depending upon which camera was used, though I can crop to your preferred dimension).  If you would like to place an order, please contact me via email:  sonotcool@gmail.com.  Please state size, and if you prefer full-bleed or white-edge.  Photos NOT FOR SALE include most family photos, the unmasked series, and ambient-audio photos.  Prices as follows (although some of the older photos cannot be reproduced on a large scale). 

    • 4 x 6" -- $7 OR $4 each for two or more. 
    • 5 x 7" -- $12 OR $8 each for two or more.
    • 8 x 12" (or 8 x 10") -- $20 OR $14 each for two or more. 
    • 11 x 14" (-ish) -- $36 OR $25 for two or more.   

    (These prices are about half of what I usually charge.) 

    If you'd like to browse my photos, here are a few places to get you started:

    • Photo Blog -- Click on the photo to advance to the next one.  Most of these pictures have been shot in the last six months.  You probably won't want a picture of my cat, but you might be interested in some drippy hostas or dead fish or a grey day.
    • Flickr -- You can browse page by page, which is probably pretty boring.  Or, you can look at sets such as home comforts or one of the seasons, though they aren't complete.  (Maybe I should work on that to keep usy-bay for a bit.)

    Okay, that's all the self-promotion that I can stand for one day. I think that I'll go scrub my bathtub with a toothbrush, separate all the rocks on the beach by color, and then count my grey hairs.  That should keep me usy-bay for a little while. 

July 27, 2008

July 25, 2008

  • who are the people in your neighborhood?





    I want to thank each and every one of you that left a sweet comment, a helpful suggestion, sent an email, made me laugh, or offered support in any way in response to that last frenzy-of-a-post.  Many of you moved me to tears (in a good way).  I appreciate your sentiments and I feel like I'm part of a real community here. 

    No, I AM part of a wonderful, REAL community. 

    A community of people that, if you were my neighbors, I would answer the door for you. 

    But, if I lead you to the garden instead of inside ... it's because my house is askew.  Please, just pretend that you're interested in the flowers.   







July 24, 2008

  • dr. house, paging, dr. house.





    I no longer blog much about my health, or lack thereof, but I need to write about it today ... if for no other reason than to get it OUT of my head so that maybe I can move forward with my day.  Or, week.  Or, month.  Year? 

    I am planning to write about type I diabetes soon, covering common misconceptions as well as provide some info about insulin pumps and general life with diabetes.  (For those unaware, both X and I have type I diabetes ... I've had it for 25 years and X for 14, since age two.) 

    So, diabetes and hypothyroidism (16 years) aside, I have lived with chronic pain for ten years.  In the beginning, while seeking a diagnosis, or even just a LOGICAL EXPLANATION for the misery, the following were ruled out:

    • fibromyalgia
    • chronic fatigue syndrome
    • lupus
    • depression
    • any type of arthritis
    • adrenal abnormalities
    • cancer
    • Lyme disease
    • anemia
    • ...

    During my decade-long search for RELIEF from PAIN and EXHAUSTION, I was treated with various narcotic medications (Vicodin, Percocet, morphine, and OxyContin), none of which really helped.  In reality, taking these meds caused more problems because, even though I am a good patient and followed dosing instructions, I not only went through withdrawals on a regular basis (especially while trying to sleep), but also suffered worsening pain brought on by some of these medications. 

    For instance, did you know that Vicodin can make you stiff as a board (neck & back) and tear the hell out of your stomach?  If you take it for a few days or maybe a week, you might be fine.  Longer than that?  Be aware ... you might be fine, but YOU MIGHT BE ENTERING THE BOWELS OF HELL. 

    Not only that, but because I was on these strong narcotic medications, I was constantly being scrutinized and treated like a drug addict.  TWICE, I was taken to a bathroom with taped-up faucets and told to pee in a cup.  Once, an unscrupulous family member with narcotics-dependence issues compromised my medical care and called my doctor to tell her that she thought I was "faking the pain".  (Thanks, Mom.) 

    About five years ago, I said "enough is enough" and demanded to be taken off of all the pain meds.  Frankly, I was in no worse pain off of them than on them.  (A few years later, I asked for the weakest pain medication available.  I was prescribed Darvocet, which I still take today.  After being on it for a year, I demanded again to be put on a smaller dose because I AM ALWAYS TRYING TO PROVE THAT I DON'T WANT THE PAIN MEDS FOR FUN, BUT JUST FOR PAIN!!)

    What was I diagnosed with?  Chronic vitamin D deficiency and, get this ... stiff person syndrome.  Please don't laugh at the second diagnosis.  It's a real disease despite the fact that most doctors have never heard of it, and I had one confuse it with fibromyalgia and try to change my medications.  What is stiff person syndrome?  Here's a fairly good description from the National Institute of Neurological Disorders:

    Stiff person syndrome (SPS) is a rare neurological disorder with features of an autoimmune disease. SPS is characterized by fluctuating muscle rigidity in the trunk and limbs and a heightened sensitivity to stimuli such as noise, touch, and emotional distress, which can set off muscle spasms. Abnormal postures, often hunched over and stiffened, are characteristic of the disorder. People with SPS can be too disabled to walk or move, or they are afraid to leave the house because street noises, such as the sound of a horn, can trigger spasms and falls. SPS affects twice as many women as men. It is frequently associated with other autoimmune diseases such as diabetes, thyroiditis, vitiligo, and pernicious anemia. Scientists don’t yet understand what causes SPS, but research indicates that it is the result of an autoimmune response gone awry in the brain and spinal cord. The disorder is often misdiagnosed as Parkinson’s disease, multiple sclerosis, fibromyalgia, psychosomatic illness, or anxiety and phobia. A definitive diagnosis can be made with a blood test that measures the level of glutamic acid decarboxylase (GAD) antibodies in the blood. People with SPS have elevated levels of GAD, an antibody that works against an enzyme involved in the synthesis of an important neurotransmitter in the brain.

    For this condition, I take diazepam (Valium), which MAYBE TAKES THE EDGE OFF.  (Combine a fake-sounding illness with Valium, and ... THEN TRY TO GET PEOPLE TO TAKE YOUR CONDITION SERIOUSLY.  It does NOT happen.  Instead, people think that I am anxiety-ridden and claiming to have a made-up illness.  So NOT cool.) 

    All that aside ... I am in pain more often than not.  I cancel plans more often than not.  I wake up in pain daily.  It takes me hours and hours to be in any sort of shape to do anything or go anywhere EVERY. SINGLE. DAY.  And, people in my life, including family members (but not theother23 or X), DO NOT UNDERSTAND (or refuse to).

    Where is this (the post, the explanation, the rant) all coming from? 

    I am gearing up for another doctor appointment, which I haven't even made yet, to ask for help in relieving my stiffness/pain and to find out why, if I have been debilitated by this for a decade, I can't receive disability or social security.  I can't work.  I have repeatedly tried.  I try to work from home ... but, I'm not dependable.  I might be able to work for a day or two, and then I'm unable to work for two weeks. 

    Also?  Taking care of myself is a FULL-TIME JOB ... I exercise.  I stretch.  I take a myriad of medications and supplements at specific times throughout the day.  I eat immaculately.  I meditate.  I do yoga.  I educate myself.  I log my symptoms and their progression, my digression.  I go to doctor appointments.  I have gotten rid of vices.  I think positively.  I keep hope alive.  I do everything humanly possible to feel better and be accountable for my well being. 

    (Additionally, I want to add that I have spent THOUSANDS AND THOUSANDS of dollars on medications, doctors, and other treatments such as massage therapy, cranio-sacral therapy, acupuncture ... and, the list goes on ... all without any palpable relief from pain/stiffness.)   

    I don't know what else to say about this today, except ... if you have a suggestion about how to get some help, an advocate, considered for disability ... I'm listening.  Just remember, I'm tired.  Too tired to fight the system on my own. 

July 23, 2008

  • the way we were.

    Over the years, I have often blogged about and posted photos of Parfrey's Glen, which is Wisconsin's first designated state natural area and my very favorite place to walk/hike.  It is a one-mile trail that enters a deep gorge and ends with a small waterfall.  I wish that I could share with you the cool temperature change as you enter the gorge, the sweet smell of flowers-fir-fungi-damp-and-deep forest, and the sound of a truly-babbling brook.  It's a magical place, if ever one did exist. 

    During the heavy rains and flooding in June, it was badly damaged.  The wooden pathways, which protected the rare flora and fauna from the trampling of visitors, were destroyed.  The creek shifted, rerouted.  Large boulders were moved by the water. 

    We had planned to go there with X's friends on her birthday, but it was, and still is, closed.  INDEFINITELY. 

    Yesterday, I read THIS PRESS RELEASE from the DNR and viewed newly-released photos of the damage.  While none of this may be interesting to you, it makes me nostalgic, so ... here are some photos of our hike with Gloria in October of 2007.  (THIS is one of my favorite photos from Parfrey's Glen, which is from about four years ago and I'm sure many of you remember it.) 

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