tag:blogger.com,1999:blog-27040400885378454532012-01-24T16:52:19.192-05:00Sharing my life experiences challenged with Stiff Person Syndrome and diabetes, two chronic and disabling disorders; living forward with determination and humor, flying with wings of hope..."in spite of."Debbienoreply@blogger.comBlogger1001100tag:blogger.com,1999:blog-2704040088537845453.post-42778304064929292932012-01-20T08:47:00.011-05:002012-01-21T10:47:16.331-05:00

I watched Josey Wales the other night. From my SPS perspective, I vividly remember the date my normal life was violently destroyed by total Stiff Person assault. With diagnosis, I buried my former life in a daze of disbelief and grief, like Josey buried his slaughtered wife and son.In a daily fight for some kind of life, I am an SPS outlaw. I can relate to being hunted down, ducking danger, and

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-21690466720300128072012-01-02T15:25:00.010-05:002012-01-12T12:45:02.274-05:00

"There must be a day or two in a man's life when he is the precise age for something important." ~Franklin P. AdamsBack in "my day," turning 18 was epic--old enough for emancipation from parental rule, to legally buy and drink 3.2 beer, and to vote. Twenty-one was eagerly anticipated by the 3.2 beer crowd wishing to try the harder things in life. Overachievers.In my early 20s, talk of

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-71251905687263767172011-12-30T14:17:00.004-05:002012-01-12T12:42:54.240-05:00

"Oh the pain, the pain." Dr. SmithLost In Space (1965-1968)How to describe triggers for my symptom flares for SPS, (Stiff Person Syndrome). SPS is as sensitive to everything/anything as an anemic first-day menstruating female vampire, after a month-long starvation diet, during a full moon on crack--craving blood--mine!This week, my SPS trigger was weather. Nothing drastic, just a slight drop in

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-16663441819953589622011-12-26T13:53:00.008-05:002012-01-12T12:40:46.615-05:00

"My school was so tough the school newspaper had an obituary section." ~Norm Crosby quotesSPSU, Stiff Person Syndrome University, is equivalent to Harvard graduate school if diagnosis was classified as a medical "School of Hard Knocks." I won a full scholarship with my very high antibody score and impressive EMG results. My final clinical evaluation cinched acceptance. There are a few fine

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-18717113466621682452011-12-21T13:52:00.006-05:002012-01-12T12:38:26.839-05:00

“I am not in the giving vein to-day.” ~William Shakespeare During a gym workout earlier this week, I noticed the bulging veins on the young man beside me on the bicep curls equipment. Looking at my arms, I notice the same bulging veins. I also notice the telltale lumps from over two decades of poke and prod from my blood lab-work.Receiving infusions since 1994, not to mention several blood

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-54617644333431556052011-12-21T12:58:00.011-05:002012-01-12T12:35:43.134-05:00

"You were born an original. Don't die a copy." ~John MasonSome may call it a midlife crisis when you reach 50 and begin redefining your life for your encore. My life crisis came at 36 with a chronic life-altering diagnosis, life sentence, of Stiff Person Syndrome.With that diagnosis, I lost my life, identity, and future to be tossed on the self-deprecating heap of "disabled" humanity. My

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-69044385376010075272011-12-19T14:09:00.012-05:002012-01-12T12:32:08.419-05:00

"It always rains on tents. Rainstorms will travel thousands of miles, against prevailing winds for the opportunity to rain on a tent." ~Dave BarryIn October, a girlfriend and I decided to break from the normal shopping, lunch, and movie outings to go camping. The distant rumbling of a storm began with our deviation from the mall sale racks to Sports Academy for fire starters. It poured rain

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-86553845279293459452011-10-08T22:38:00.009-04:002012-01-12T12:30:39.092-05:00

"Everybody needs beauty as well as bread, places to play in and pray in, where nature may heal and give strength to body and soul." ~John MuirA rainy Saturday. A free afternoon. My girlfriend and I decide to go shopping and have lunch. Lunch involved a carb and fat laden order of fried onion rings, loaded cheeseburger, and a DQ Flurry. Shopping involved...sporting goods.Big Lots yielded a

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-4764461612677842662011-10-08T21:27:00.010-04:002012-01-12T12:26:13.257-05:00

“We are in the same tent as the clowns and the freaks-that's show business.”~Edward E. MurrowSeptember was my fall tour, visiting all of my specialists in four weeks with a grand finale--my scheduled booking at the oncology clinic for my monthly infusion of IVIg. Complimentary concessions included crackers and juice to toast my yawner of a performance due to a double dose of pre-poke

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-15664480828096105462011-10-08T21:00:00.005-04:002012-01-12T12:23:46.729-05:00

"I am a flower quickly fading, here today and gone tomorrow, a wave tossed in the ocean, a vapor in the wind." ~Casting CrownsThis is one of my favorite songs and defines the most important aspect of the many nuances that define me. I am His.

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-67558539140927693612011-08-08T13:34:00.012-04:002012-01-12T12:22:17.853-05:00

"Distance not only gives nostalgia, but perspective, and maybe objectivity." ~Robert MorganOn an impulse, I slipped my camera from my purse and took some photos on my flight's ascent. Many thoughts twirled through my mind--the ever present angst of traveling alone with my invisible syndrome terrorist, those I was leaving behind, my destination.I became philosophical viewing the distant horizon

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-14848774694246274582011-08-07T18:29:00.011-04:002012-01-12T12:19:35.067-05:00

Chuck Jones said, “Wile E. is my reality, Bugs Bunny is my goal.” Diagnosed with Stiff Person syndrome, I am living a Looney Tunes reality as Wile. E. Coyote. The ever unpredictable efficiency of "Acme" prescriptions, situation or emotional stimulus, combined with my personal Wile. E. cunning is a potential recipe for "Th-th-th-that's all Folks!" My only hope is to capture the ease and speed of

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-53418859082665243352011-06-24T13:18:00.007-04:002012-01-12T12:04:56.589-05:00

"According to your medical checkup, you are dead." ~A doctor to René Desmaison after he was rescued off the north face of Grandes Jorasses, having spent 342 hours without food or water.Yesterday I received my medical update status to turn in for my continued life insurance coverage. (I lose value as I age.) In reading about my condition, there were only three lines to list the diagnostic codes

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-54510360322148381602011-06-24T11:57:00.011-04:002012-01-12T12:04:29.949-05:00

“Life gives us brief moments with another...but sometimes in those brief moment we get memories that last a life time...” ~UnknownI made it! My first solo road trip to surprise Mom for Mother's Day. May, 2011 - a month of memories.Hanging out at Mom's for a couple of weeks, we talked, watched Dancing With The Stars, talked, shopped, ate out, talked, lounged, took walks, worked in Mom's doctor

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-18223316694594973922011-06-18T12:55:00.022-04:002012-01-12T12:01:14.324-05:00

"There is great meaning in life for those who are willing to journey." ~Jim EnglandWinter was bitter, harsh, and lonely morphing into a gray, damp, chilly afterthought. No spring for her. Sharing morning marathon talks over coffee by phone, my mom and I are very close but separated by 900 miles. The long bleak months of home confinement, coupled with some newly diagnosed health issues, were

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-44364492063693783582011-04-16T11:43:00.008-04:002012-01-12T11:56:03.889-05:00

“Nobody realizes that some people expend tremendous energy merely to be normal.” ~Albert CamusMy patient files are two inches thick--at three different physicians' offices. I am a medical enigma, even to myself. Daily juggling medication times, carb-counting, blood checks, and physical ability vs. energy output, my life is anything but normal. Sweet uncomplicated "normalcy" is my heart's desire.

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-38169984340761095182011-04-07T18:35:00.007-04:002012-01-12T11:53:02.197-05:00

“I feel sexy when I get out of the tub - your skin is fresh and you've put up your hair without looking.” ~Shania TwainLiving with the daily challenges of chronic illness and time consumption with the general busyness of life leave little time for self-indulgence, let alone pampering my femininity. Too tired or lack of interest are convenient excuses. But once in awhile...Alone, the peace and

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-50233696910935481082011-03-12T12:35:00.008-05:002012-01-12T11:51:50.011-05:00

"Progress always involves risks. You can't steal second base and keep your foot on first." ~Frederick B. WilcoxI always viewed baseball as the least invasive contact sport, until I compared it to living with Stiff Person Syndrome. The opportunity to score is only when you leave the safety of the dugout--alone--just you, the pitcher, and the ability to crack a trick pitch to run for the safety of

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-56486543468661486422011-03-04T13:00:00.007-05:002012-01-12T11:48:23.822-05:00

“Those who bring sunshine to the lives of others cannot keep it from themselves.” ~James Matthew BarrieI live with chronic illness. Anyone living with a chronic condition knows the physical discomfort, limitations, and emotional expense it takes every single day. If I let it go unchecked, I drown in a self-absorbed preoccupation with the popular trio of me, myself, and I. It is easy to see

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-46679790019439651992011-03-04T12:16:00.007-05:002012-01-12T11:45:51.211-05:00

“A warrior takes responsibility for his acts, for the most trivial of acts. An average man acts out his thoughts, and never takes responsibility for what he does.” ~Carlos Castaneda Tuesday evening was a fun get-together with friends for pizza. It is liberating and healing to laugh and socialize in a 'normal' setting--especially if pizza is involved. I talked a friend into splitting a sinfully

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-52145636846509241102011-03-04T12:05:00.006-05:002012-01-12T11:43:17.961-05:00

Rare Disease Day is recognized on February 28. For those of us with a rare disease, every day is rare disease day. I appreciate the many unified voices of advocacy, along with the year-long efforts of Eurodis and NORD, to bring awareness to this 'rare' community that collectively affects 1 out of 10 individuals.I am always touched and inspired reading the stories of others with a different

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-21335662767232164602011-02-09T06:58:00.006-05:002012-01-12T11:37:39.409-05:00

"The warmth of a friend's presence brings joy to our hearts, sunlight to our souls, and pleasure to all of life." ~UnknownYesterday, I had planned on my original SPS-friendly workout at the gym, but a friend phoned. I took the call instead. She and I shared some serious talk, exchanged some thoughts, and had some female giggles. Feeling light, I opted for walking practice instead.Floating on

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-87078500433670052532011-02-09T05:46:00.013-05:002011-08-07T21:34:21.846-04:00

“The photographer's palette [is] a thousand shades of gray.” ~H. E. ClarkMonday was my monthly infusion. Sitting in the waiting room, the window framed a panoramic view of the ocean. Monday was a cold and rainy day--gray. Looking out of the window, I experienced my first-time observation the entire seascape was gray--different shades of gray. Previously unaware of the multiple shades of gray

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-73705262336524239382011-01-27T15:29:00.010-05:002012-01-12T11:34:14.043-05:00

"Cultivate your curves - they may be dangerous but they won't be avoided." ~Mae WestA friend and I were going for a walk at the mall combined with shopping for two 'must have' additions to my wardrobe: a pair of black dress pants and a gray skirt. She understands about my SPS, so was unfazed at my army camouflage print baby stroller (surrogate walker) to carry my 50lb. purse, hiking pole, and

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-26281724296197322812011-01-17T17:27:00.007-05:002012-01-12T11:31:26.066-05:00

“Pain is no evil, unless it conquers us” ~Charles Kingsley~I loved this song before diagnosed with SPS. I love it more now. It could be a theme at times, the feeling of me against the world. Alone, embattled, abandoned. Ironically, this song is by a group called Survivor.“Victory at all costs, victory in spite of all terror, victory however long and hard the road may be; for without victory

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-54178103565898130882011-01-17T16:16:00.014-05:002012-01-12T11:27:23.333-05:00

“We don't see this as a budget exercise. It's about management excellence.”~David Barna~SPS is a wicked step-mother with a Scrooge mentality of miserly. Every morning I timidly approach this domineering presence with my syndrome weary hand extended for a few pennies of ability. Gnarled fingers rattle the clinking coins from her full apron pocket in a cruel tease. I hold my breath in

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-13554631452337862972011-01-17T14:44:00.007-05:002012-01-12T11:18:16.400-05:00

National Organization for Rare Disorders Awards Grant to Support Research in Stiff-Person Syndrome I am really excited about this research grant for several reasons. 1) NORD will distribute this media release to approximately 11,000 contacts. Lundbeck released it on Business Wire. (I do not know how many that will reach.) SPS will get some serious exposure...awareness for us! ;)2) Lundbeck's

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-23769175403076515732010-12-10T06:49:00.008-05:002012-01-12T11:08:47.451-05:00

"You can't wrap love in a box, but you can wrap a person in a hug." ~Author UnknownI have always heard the expression "a country mile" used to express a long distance of nothing. Having hyper stimulus-sensitive triggers of SPS, I have serious issues with "a city block."Several days ago, I had an appointment in a busy area of the city. Timing my appointment with peak medication efficacy, I had

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-49259608497896860032010-12-10T05:38:00.007-05:002012-01-12T11:05:43.533-05:00

I remember when my son received his young-boy Christmas dream of an Atari. In the background, I could hear a heavenly choir sing in harmonious rapture at his enthusiasm. The Atari games! Graphics, arcade music, and sound effects are archaic compared to current technology--except for Frogger. Pre-SPS, I would watch in rapt fascination as the little frog navigated traffic and obstacles in crossing

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-71592220963069718432010-11-17T10:44:00.008-05:002012-01-12T11:03:01.769-05:00

"If people were meant to pop out of bed, we'd all sleep in toasters." ~Garfield"Pre" SPS, I would wake up at 5:00 AM, shower, make my bed and lunch, arouse a sleepy and grouchy toddler, dress her and make her bed while the commotion awakened her older brother to get ready for school. Then--a dash to the babysitter, a prayer for no train at the railroad crossing, and clock in at my usual two

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-35895869484714233272010-11-15T14:14:00.006-05:002012-01-12T11:01:01.510-05:00

"I am as a wonder unto many, but thou art my strong refuge." ~Psalms 71:7 KJVPart of my emotional coping is my spiritual faith. I enjoy a quiet time in the morning reading Scripture and praying. I relate to King David and enjoy his writing in the Psalms.When I read the opening verse, I smiled. With SPS, I am "as a wonder to many," myself included. I loved David's recognition of God being his

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-47280474307263107252010-11-15T13:32:00.009-05:002012-01-12T10:56:26.827-05:00

“When life knocks you down you have two choices- stay down or get up.”~Tom KrauseNovember 7th. I woke up feeling good. I love my new church and waited for meds to kick in to shower and go. With Stiff Person Syndrome, that "feel good" feeling can change on a dime. (I lost that loving' feelin.')Being a little on the chilly side outside, and with my SPS angst of getting "ready, set, go" with out of

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-78398509204321622142010-11-01T09:22:00.008-04:002012-01-12T10:55:53.868-05:00

"I think that I cannot preserve my health and spirits, unless I spend four hours a day at least - and it is commonly more than that - sauntering through the woods and over the hills and fields, absolutely free from all worldly engagements." ~Henry David ThoreauWith SPS, 'sauntering' would be an achievement and four hours in the woods would be a news-breaking star search for me by the 911 rescue

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-72626773157113905382010-10-06T10:19:00.003-04:002012-01-12T10:51:37.609-05:00

A successful tool is used to do something undreamed of by its author. ~ Samuel Curtis Johnson, Sr. A special space for just me - my own computer room! The oversized, clunky computer hutch was about to become trash pick-up roadkill. (Or bounty for those who peruse the neighborhood under the cover of night looking for curbside 'treasure.')Entering a furniture store with giddy visions of a

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-46269290740726899782010-09-26T10:08:00.005-04:002012-01-12T10:47:19.416-05:00

“Reality is the leading cause of stress for those in touch with it."~ Jane Wagner “There cannot be a stressful crisis next week. My schedule is already full."~ Henry Kissinger'They' (Whoever they are?) say "stress will kill you." SPS unleashes a maniacal stress Trojan into my neuroinhibitory modem. Norton, aka modern medicine, does not have a fix, just temporary patches, for this destructive

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-35691001950937401852010-09-20T10:15:00.010-04:002012-01-12T10:43:21.765-05:00

"It is only when we silent the blaring sounds of our daily existence that we can finally hear the whispers of truth that life reveals to us, as it stands knocking on the doorsteps of our hearts." ~K.T. JongI am so angry and furious...with me. SPS is a fence that creates a physical boundary. I make promises to myself about moving forward, but find myself running around in my enclosure yapping

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-75279343644185161002010-08-09T07:44:00.011-04:002012-01-12T10:41:35.817-05:00

"I'm not a prophet or a stone aged man, just a mortal with potential of a superman. I'm living on." ~David BowieLogoCloaked beneath my red cape of medication peaks, I am confused as a superhero wearing my practiced smile of hiding pain while mentally devising continual strategies to circumvent triggers. Superman...courageous, strong, fighting the relentless onslaught of syndrome symptoms. In

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-35936696395197042432010-07-07T14:32:00.019-04:002012-01-12T10:30:29.013-05:00

"My boyfriend's back and I am in trouble." ~Debbie's Song ParodyI remember way back in Junior High, (now Middle School), the prestige of being given a boy's ID bracelet to wear. His name on your wrist was a badge of honor, tween envy of having a boyfriend...going steady.A dramatic SPS episode last week was a brutal reminder of how precarious and unpredictable an episode assault can be.

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-70136208114811814072010-07-03T14:31:00.002-04:002012-01-12T10:29:20.481-05:00

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-52145666262186489202010-07-03T13:25:00.013-04:002012-01-12T10:22:09.831-05:00

Anger blows out the lamp of the mind. ~Robert G. IngersollWe are all in the gutter, but some of us are looking at the stars. ~Oscar Wilde, Lady Windermere's Fan, 1893=====Preface: I understand the pain, physical and mental, of living with a chronic diagnosis. Currently, I am living with four and waiting further test results.I experience times of grief, anger, depression, and sadness. It is my

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-77103586693864252772010-07-03T09:02:00.003-04:002012-01-12T09:59:44.082-05:00

June 30, 2010“[•] How Does He Do That? ... Pan The Camera 45 Degrees.” ~ David Copperfield Often I hear, "How do you do that?", when I explain I have SPS. Disbelief reactions at some of my perceived 'normalcy' in regards to appearance, a clean house, or animated conversation. It is all illusion, smoke and mirrors of medication magic. Yesterday morning, I felt the tightening and ripples of what

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-23486498980896663202010-07-03T08:52:00.003-04:002012-01-12T09:59:01.461-05:00

June 12, 2010"There is a fine line between serendipity and stalking." ~David ColemanI woke up this morning with a pulse. This is a good start. Unfortunately, hormones have SPS on the offensive. Next medication peak, I hope (?) to get groceries. I have a confession...I stalk shopping carts. The handicap placard is of no use to me without an "open the door accessible shopping cart." (And

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-40427252389573845102010-07-03T08:07:00.009-04:002012-01-11T19:32:41.868-05:00

June 12, 2010 "Life is a shipwreck but we must not forget to sing in the lifeboats."~VoltaireMost people are familiar with the Holocaust and the genocide of Hussein. The Killing Fields was a movie depicting the torture and slaughter of one million Cambodians. Why did I choose such graphic horrors to open this post? Stiff Person Syndrome, as with any

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-11008587761644440022010-04-08T20:59:00.008-04:002010-04-09T08:45:00.399-04:00

"I've seen George Foreman shadow boxing and the shadow won."~George Foreman"Only the Shadow knows." Raspy words whispered in ominous secrecy from various black and white television shows viewed during my childhood. "The Shadow." Dark, relentless, stalking...an unknown entity lurking, watching, waiting. I have given "The Shadow" a name, Stiff Person Syndrome, (SPS), my diagnosis...my

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-9597273059651339662010-03-16T13:36:00.007-04:002011-02-21T16:10:41.072-05:00

"You may only be one person to the world, but you may also be the world to one person." ~UnknownHis hands gently cup my face as he looks into my eyes, then softly kisses my lips. Complete acceptance of me in spite of my illnesses and my disability, asking nothing of me but to be loved in return. Hugging me in a tight squeeze, he whispers in my ear, "I love you, Grandma."I spent a magical week

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-59869370019143673002010-03-03T08:02:00.006-05:002011-10-06T12:39:20.423-04:00

"Cosmetics is a boon to every woman, but a girl's best friend is still a nearsighted man." ~Yoko OnoValentine's Day has passed, but I am considering therapy for PTSD - Post Traumatic Shopping Disorder - buying lingerie for Valentine's Day.I am not afflicted with Jello jiggles and wiggles, but I sense my body's equater is creeping closer to hipline? Everything is shifting to my southern hemisphere

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-81015789687948719442010-02-01T10:46:00.012-05:002012-01-11T10:10:43.596-05:00

"Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next."~Gilda Radner~Change. I felt, rather than saw, a hair on my chin. Armed with tweezers and trying to locate the strand in the mirror, I successfully plucked the loner out. Like a weed, I know more will eventually follow. The single chin hair surfaced

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-23347971752020230402010-02-01T09:11:00.005-05:002010-02-01T10:30:59.670-05:00

"It's no longer a question of staying healthy. It's a question of finding a sickness you like." ~Jackie Mason~President Bush coined the phrase "axis of evil," in naming three countries as a terrorist threat. I can think of the mystery-enshrouded Bermuda Triangle, the folklore, "Death comes in threes," and especially three sisters I babysat in linking the number three with threat and terror.

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-84381284302748671342010-01-11T18:20:00.009-05:002010-02-01T09:09:50.583-05:00

"Beauty is skin deep."My last haircut by the new girl at the salon was great. Taking her time, she was meticulous in making sure my ends were even. I was impressed. I asked for her card. Last Tuesday, I was due for some serious shearing, (more like pruning), so I requested her again.Starting to sport a handlebar moustache, I asked for a lip wax. Again, taking her time, and with professional

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-32698022056412859982009-12-27T11:54:00.012-05:002011-12-20T19:32:09.042-05:00

This Christmas was a mixed bag for me. I celebrated within the physical limitations and mental anguish of having a rare neurological illness, somehow looking 'normal' to most folks. Humor is an irreverent way I cope.On a tombstone: - "I TOLD YOU I WAS SICK" THE NIGHT BEFORE CHRISTMAS (My Stiff Person Syndrome version.)I love Christmas carols, the beauty of the Christmas tree, childish magic,

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-27968592005248825732009-12-17T15:44:00.013-05:002011-09-21T08:33:51.503-04:00

"All's well that ends well." ~Unknown~Several people prepped me for my colonoscopy with tales, (interesting pun), of orbit-blasting day before colon cleansing as being the worst part of the 'procedure.' (Procedure emphasized with an ominous hush.)The day before my 'procedure', I stopped at the store for my intestinal purge supplies while selecting from a severely limited list of food choices from

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-25874334101108922982009-12-05T10:10:00.013-05:002009-12-05T14:37:14.272-05:00

"Everything is funny as long as it is happening to somebody else." ~Will Rogers~I found the featured t-shirt slogan online at Cafe Press. How to decide between bright yellow or a soft pink t-shirt with the slogan, "I love colonoscopies." Neither is on my Christmas wish list. It is a gift idea for that relative or ex who is a pain in the wazoo.Having one of my periodic checkups with my GP in

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-63875247501506946192009-11-21T15:32:00.006-05:002011-02-21T16:02:32.686-05:00

Some of life's most important lessons come from unexpected experiences. I learned some valuable insights from high school basketball and backyard moles.My high school sponsored a girl’s basketball team, the Eagles. I played forward. An inspirational mentor, our coach was a former women’s center for Kentucky University. She wasn’t concerned about winning or scores. She wanted us to learn

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-4201606944370992172009-11-18T16:43:00.002-05:002010-11-02T10:06:49.892-04:00

"The Internet is so big, so powerful and so pointless that for some people it is a complete substitute for life." ~Andrew Brown~December, 1999. Our first computer. I could hear an angelic choir rejoice as the PC tower emerged from the Gateway box. Disabled with a rare neurological disorder, Internet Explorer became my Starship Enterprise. With warp speed, my keyboard transported me out of

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-64249867157197128032009-11-16T08:47:00.007-05:002009-11-16T14:08:12.876-05:00

"Life is a rollercoaster. Try to eat a light lunch."~David A.Schmaltz~ "Good Morning Vietnam!" Opening my eyes, I greet myself with the same irreverent enthusiasm of Robin William's DJ role in a controversial war zone. Living with disability is waking every day to a personal war...my life under siege by a relentless neurological disorder.Through various avenues, I communicate with others with

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-71332562472133924712009-11-09T22:34:00.001-05:002009-11-09T22:34:27.372-05:00

Have You Heard of Stiff-person Syndrome?It's so rare it strikes fewer than one person in a million. Its sufferers find themselves bent in strange, painful postures. Read how it's diagnosed and treated.Read More

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-7827112036215899702009-11-09T16:34:00.007-05:002009-11-10T12:12:25.439-05:00

“Aerodynamically, the bumble bee shouldn't be able to fly, but the bumble bee doesn't know it so it goes on flying anyway.”People are still people, disabled or not. In contemplating various outlooks on life, I named them the bee-attitudes.May-bee. A noncommittal buzz lacking passion, dependability, or predictability. The may-bee flies aimlessly at whim without a sense of direction or

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-73695527348163961232009-10-26T15:15:00.006-04:002009-10-26T18:20:34.979-04:00

"A keen sense of humor helps us to overlook the unbecoming, understand the unconventional, tolerate the unpleasant, overcome the unexpected, and outlast the unbearable." ~Billy Graham~Becoming disabled is starring in my own personal "A Nightmare On Elm Street," except there is not even a waking reprieve. My Freddy Krueger is my diagnosis - Stiff Person Syndrome.Stiff Person Syndrome, SPS, is a

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-57214445490254826792009-10-13T14:17:00.011-04:002009-10-16T12:06:15.582-04:00

"Oh, yes, the game was to just find something about everything to be glad about -- not matter what twas," rejoined Pollyanna earnestly. "And we began right then -- on the crutches.""The Grinch: "Those Whos are hard to frazzle, Max. But, we did our worst, and that's all that matters." Hayley Mills as Pollyanna - the rainbows and sunshine little girl who rambled optimism, ad nauseum, to everyone

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-30348882101699344352009-10-03T14:46:00.000-04:002009-10-03T14:46:08.554-04:00

7 Secrets to Happiness When You Live with Illness

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-11644292826670216952009-10-02T08:33:00.008-04:002009-10-02T10:20:40.339-04:00

I love Tim Tebow, the University of Florida's quarterback, not because I am a football fan, but because of what he stands for. A young man with deep spiritual convictions, Tim lives what he believes. Athletically gifted, he is a hero to college football enthusiasts...especially to Boomer, a seven-year-old boy with cerebral palsy. The following story touched my heart.Huge Gator fan gets

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-4795209628384086712009-10-01T15:46:00.009-04:002011-03-12T19:54:05.725-05:00

"Without ice cream, there would be darkness and chaos." ~Don Kardong~I was a child during the 60's. Television images imprinted my young mind with Walter Cronkite's nightly narratives. Political dissension, assassinations, racial riots, and the violent war images from a geographically-obscure Viet Nam. My childhood fascination was for the hippies...free love, the Woodstock coverage, flowers,

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-17700780103345865502009-09-25T23:18:00.006-04:002009-09-27T13:46:50.771-04:00

American Pain FoundationA unified voice of hope and power over pain.First Annual National Day of ActionSaturday, Sept. 26th, 2009Along with several well-known disorders, many rare and difficult-to-diagnose disorders share the symptom of chronic pain. September is invisible illness awareness, but it is also the month for pain awareness.Check out the American Pain Foundation's website to see what

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-3976642514372147122009-09-25T22:57:00.008-04:002009-10-01T19:44:27.077-04:00

I am a little late in posting Invisible Illness Week. It is never too late to share the statistics of invisible illness, social misunderstanding, and how many of us with chronic or disabling illness do not "look sick."A Little Help Gives A Lot Of Hope

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-82049938927877340532009-09-03T15:30:00.004-04:002009-09-24T14:32:04.175-04:00

"Too many girls follow the line of least resistance--but a good line is hard to resist." ~Mae West~"Just breathe and focus." I tried to calm my heightened, in red-alert, barely contained SPS agoraphobic panic in the airport. My heavy carry-on, filled with all my Stiff Person meds, diabetic life support, and excess shoes, rolled behind me with a stabilizing balance in my left hand while my right

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-7622519160612449332009-08-07T16:23:00.001-04:002009-08-07T19:43:21.650-04:00

“The last of human freedoms - the ability to chose one's attitude in a given set of circumstances.” ~Viktor Frankl~Disability determines many things in my life of which I have no control, but I still have choices.Blame or Accountability?Some blame God...sin. Some blame physicians. Others blame their circumstances on family, society, government, the dog. The reality is life just isn't fair.

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-19224978293032108422009-07-08T07:55:00.003-04:002009-11-22T07:28:57.794-05:00

Having SPS has robbed me. I am disabled, a dependent on healthcare/medications, and have compromised mobility. While I understandably have my moments/days, SPS cannot control my thoughts unless I allow it. Disability has not robbed me of life, just altered it. ;)I love the following list and wish to share it with you...steroids for the soul. ;)==========Written By Regina Brett, 90 years old, of

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-10367244243925469822009-06-30T15:02:00.002-04:002012-01-11T10:13:10.114-05:00

Male menopause is a lot more fun than female menopause. With female menopause you gain weight and get hot flashes. Male menopause - you get to date young girls and drive motorcycles.- Rita RudnerI woke up Saturday morning a little sweaty. Was I having a night sweat? It was morning, humid and in the 90s. How will I know? I keep waiting...for something; I mean nothing? I have noticed a need for

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-39305990045088226542009-06-24T15:59:00.000-04:002009-06-24T16:58:06.187-04:00

"As I give thought to the matter, I find four causes for the apparent misery of old age: first, it withdraws us from active accomplishments; second, it renders the body less powerful; third, it deprives us of almost all forms of enjoyment; fourth, it stands not far from death." ~Cicero~Since diagnosed with a chronic neurological disorder, Stiff Person Syndrome, I walk with a shuffled gait, am

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-56301110500078988972009-06-16T22:28:00.001-04:002009-09-05T19:24:47.388-04:00

I look healthy. Invisible illness allows me to be a 'poser' of normalcy. The last few weeks have been a dizzying circuit of medical appointments, family visits, and time with friends. Dancing the dance of presumed health, I pay the fiddler. I guess it is like our national deficit, I keep borrowing from my future reserves until some days I collapse in bed from exhaustion.I remember the days

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-87185916171945694602009-06-01T12:44:00.000-04:002009-06-01T14:25:52.996-04:00

"You got to be careful if you don't know where you're going, because you might not get there." ~Yogi Berra~These few weeks are a personal tourist season, complete with my traveling entourage: SPS, diabetes, and what next? R & R is the brief 'recoup and repack' at home between travels.(travails?)My latest trip, I was escorted aside for additional airline security checks, coming and going. The

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-36906902908940116632009-05-16T17:04:00.000-04:002009-05-16T18:07:01.737-04:00

“Joe Fox: The Godfather answers all of life's questions. What to pack for a trip? "Leave the gun, take the cannolis."”Packing for a trip. I remember pre "D" Day,(diagnosis), lipstick, deodorant, underwear, money, tickets, the essesntials...good to go! Impromptu equated to a five-minute preboard rush for an expresso craving to go.Now...I make a list, check it twice, check it three times, and do

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-56657933184424289022009-04-29T10:39:00.000-04:002009-04-29T13:19:45.358-04:00

“A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles.” ~Christopher Reeve~"One's dignity may be assaulted, vandalized and cruelly mocked, but cannot be taken away unless it is surrendered." ~Michael J. Fox~I met Christopher Reeve and Michael J. Fox on 'big screen' dates with my son. Superman II had his four-year-old face flushed with

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-56623002427483646342009-04-21T12:33:00.001-04:002011-10-06T12:50:51.584-04:00

"Forty is the age of youth; 50 is the youth of old age."~Victor Hugo~This morning it struck me...I can tell my age by the products I buy at the drugstore. Neatly arranged on the kitchen counter, where a cannister set would have decoratively perched in my twenties, was a step-down arrangement of Bene-fiber plus calcium, Centrum Silver, and Caltrate 600-D. Now my Sam's Club must-have-supply of

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-68701522359164012122009-04-16T22:01:00.000-04:002009-04-16T23:47:27.555-04:00

“Discussion is an exchange of knowledge; an argument an exchange of ignorance.”~Robert Quillen~Misunderstanding, misperceptions...common social miscues outside of the disabled realm. I encounter misinformed and misguided, often, well-meaning people while I daily vie for the prized coping crown, wearing my practiced smile of Miss Congeniality to deter pity.I continually learn how to cope, but I

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-40522210347132079442009-02-25T15:36:00.000-05:002009-04-16T13:57:54.958-04:00

"All you need in this life is ignorance and confidence; then success is sure."~Mark Twain~Having a rare disorder, I became the albino monkey on display with my rare diagnosis at the University (teaching) hospital...elusive, alluring, a medical example for young neuros-in-training. I love to share my syndrome for the greater good, but sometimes...Example one:Redhead Fred, under the tutelage of my

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-55723863301032193612009-02-25T14:49:00.000-05:002009-04-16T13:58:20.849-04:00

“Loneliness is the first thing which God's eye named, not good” ~John Milton~The federal government defines a rare disease as one that afflicts fewer than 200,000 people. I have Stiff Person Syndrome, a rare neurological disorder, estimated to afflict approximately one in a million.One of the hardest things in living with a rare and disabling condition, for me, was the isolation of trying to

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-11854275922130484212009-01-23T14:55:00.000-05:002009-01-24T11:40:47.128-05:00

"We will either find a way or make one." ~Hannibal~"It was courage, faith, endurance and a dogged determination to surmount all obstacles that built this bridge." ~John J. Watson~

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-44512178365444090722009-01-23T14:24:00.000-05:002009-01-23T14:35:11.302-05:00

(Words of wisdom from an email forward.)Nothing else so inspires and heartens people as words of appreciation. You and I may soon forget the words of encouragement and appreciation that we utter now, but the person to whom we have spoken them may treasure them and repeat them to themselves over a lifetime. Tips for a Better Life in 2009... 1. Take a 10-30 minute walk every day. And while you

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-87494801200631023912009-01-13T16:47:00.000-05:002009-04-16T13:59:12.262-04:00

"The Difficult is that which can be done immediately; the impossible that which takes a little longer." ~George Santayana~Difficult and Impossible used to be just words to me before contracting my Stiff Person Syndrome and diabetes combo. Never did I associate these words with simplistic things like walking, putting on shoes, just standing. Difficult and Impossible have morphed into words I

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-12163959862952485352009-01-13T15:44:00.000-05:002009-04-16T14:02:30.552-04:00

Receiving my disabling diagnosis of Stiff Person Syndrome derailed my life. Every aspect of my life was drastically impacted, twisted, or destroyed. Improved health or stabilization, often, became my entire focus of living.Overwhelmed, it was easy to lose sight of who I am and difficult knowing how to live life, exchanging my was to what is; 'Is' being a fathomless unknown filled with

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-53244455973184290382009-01-06T20:25:00.000-05:002009-04-16T14:03:02.038-04:00

I may have a rare disorder and be tagged disabled, but I am still a normal woman. At the age of 51, things are still working, but I know my female engine has to be a quart low on estrogen. I don't have time for PMS as hormone fluctuations mess with my blood sugars and SPS symptoms. I also need to allow time for grooming middle-age peach fuzz.I discovered a chin hair this week. Tweezers easily

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-39411903925915602062009-01-06T18:58:00.000-05:002009-04-16T14:04:08.223-04:00

Disability wears many guises: chronic illness, neurological disorders, mental challenges, loss of a limb or mobility. People can have compassion, but to truly understand, "Walk a mile in the shoes."Add to this toxic mix a rare disorder diagnosis and understanding from the social network of medicine, people, or family is severely taxed. An explanation of the rarity of my diagnosis became a

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-38740918096368903472009-01-03T09:49:00.000-05:002009-04-16T14:04:49.422-04:00

A new year. Always a pivotal time where regrets are relived, outlooks revived, dreams resurface, and resolutions are kept promises to oneself until February, from my experience.December is a blur of several doctor appointments, delayed infusion script, a bout of flu, and oral surgery, along with my regular "issues." A new health issue surfaced...a severe vitamin D deficit requiring a bailout of

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-50904686984960957852008-11-28T11:31:00.000-05:002009-01-14T14:38:53.964-05:00

"They won’t come to learn, only to stare. I’ll be a freak in a sideshow: Lazarus the Second! Fifty cents to look, a dollar to touch."--Karl Brown (1897–1990), U.S. screenwriter, and Nick Grindé. Dr. Henryk Savaard (Boris Karloff), The Man They Could Not Hang, to his assistant, who suggests that Dr. Savaard go public with his own successful resurrection (1939).I was in high school. Cathy was in

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-47556595468677457262008-11-20T13:24:00.000-05:002009-01-14T14:42:12.049-05:00

Acronyms, a language in itself - our fast-track way of of shortening long words or phrases into condensed, easy to remember letters - silent relief from the spelling bee-challenged. (SBC?) Computers: URL,ISP,DSL,IE...Organizations: We have the DNC, RNC, AARP, EEOC, AWU, NRA...Communications: ASAP, FYI, LOL, BTW, SOS, and so on.Then comes medical lingo, quite simply, a serious diagnosis, (dx) is

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-86133555334726475702008-11-13T20:05:00.001-05:002009-09-05T21:33:42.380-04:00

"Fall seven times, stand up eight." ~Japanese Proverb~Nick is not only a great inspiration to me, from my woman's perspective, he is a hunk. He is witty, fun, a motivational speaker, real estate developer, and he was born without arms or legs. His example encourages me to see beyond my own disabilities to reach my potential. Dream it, believe it, then do it.Check out these other youtube

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-25796827415046022592008-11-01T23:00:00.002-04:002011-12-23T22:44:20.043-05:00

Disability comes in many guises, some easily discernible, others subtle, and some hidden...all with physical challenges and emotional battles. Tragic and unexpected.For some, it is a freakish accident; while others slowly erode to a "D-Day," diagnosis day, the life-altering prognosis of disabling loss of health. I was a D-Day casualty. The first punch of my doctor's pronouncement was a

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-61029731229797180312008-10-31T20:38:00.000-04:002009-01-24T12:03:59.337-05:00

I saw the young masqueraders toting their bags of goodies in small hunting parties driving home this evening. Nostalgic memories of dressing up, pretending, haunted houses, and candy made me smile.Teen years evolved into the fun of sneaking in the dark to toilet paper a friend's house or prank a teacher. The chills and screams of scary movies was a convenient snuggling excuse while on a

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-52908783726575792362008-10-31T10:23:00.000-04:002009-04-16T20:36:07.349-04:00

"Just remember, if the world didn't suck, we'd all fall off." ~Author Unknown~Living with multiple chronic conditions is very much like juggling a bowling ball, flaming baton, and a butcher's knife...while doing circles on a unicycle...keeping a vigilant eye on my street corner hat for a stealthy theft attempt of some artful dodger for my hard-earned change.My days are in constant flux, except

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-31209400432284566782008-10-05T16:00:00.001-04:002009-09-05T21:25:09.102-04:00

Then there are days...I woke one morning last week and just knew...a "bad" day. Some bad days are sub par doable, while others are a category 5 and evacuation isn't an option. This was a sub par day, mildly out of sorts, achy, and tired. Confirmation came with an episode of SPS-lock down spasm in the hallway, precariously holding a hot coffee cup with a frenzied circuit of thought racing in my

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-87795413825979871602008-09-29T10:28:00.000-04:002009-01-14T14:57:59.396-05:00

Last night I lay in the darkness, longing for the sweet oblivion of sleep...a temporary reprieve from the reality of pain and discomfort...maybe the bonus of a romantic dream with a sexy hunk.After two hours of chasing thoughts: yesterday's regrets, today's worries, tomorrow's to-dos; I finally shuffled down the hall for a 2:30 am blood-check. I clock in at a conscious and lucid 45. Nibbling a

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-48699552755744597062008-09-27T11:20:00.000-04:002009-01-14T15:00:06.525-05:00

Many yesterdays ago...I remember losing a tooth was a nifty quarter profit, a dream visit to the penny candy counter, and the giddy thrill of my younger brother's envy.The present. I finally worked in a morning appointment with a periodontist, slotted my afternoon with a pulmonologist. (another entry?) It seems my medical conditions, Stiff Person Syndrome and insulin-dependent diabetes, or

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-48201566876052505142008-09-08T16:23:00.000-04:002009-01-14T15:01:57.238-05:00

Determination, creativity, improvisation...All diverse descriptions of my living with chronic illness. Stiff Person Syndrome greatly hinders my flexibility and movement. Lack of mobility is extremely challenging when dealing with ground zero...my feet.Dressing myself, especially for church, is reminiscent of acquired skills learned at Romper Room level. Today, we will put on pantyhose, if

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-85343847450565838072008-09-08T15:26:00.000-04:002009-01-14T15:04:12.401-05:00

Victimology-Chronic Victim Investigation, CVI. It would be great to resolve the CVI drama in an hour-television show interrupted with toothpaste and Geico commercials. Chronic Victim Investigation is reality...no actors, commercial breaks, or season hiatus.Chronic investigation is my personal introspection and resolution of living with SPS and diabetes. Yesterday I wrote about chronic blues.

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-82290001288149872762008-09-07T15:33:00.000-04:002009-01-14T15:07:10.781-05:00

I am a rock,I am an Island.And a rock feels no pain;And an island never cries.~Simon & Garfunkel~Chronic Illness Attitude Blues. Yep, I get them, temporarily consumed in a melody of woe while soulfully lip-syncing with gritty emotion...usually at an occasional pity-party for only me, impromptu and private.A common misconception...expectation (?) of coping for an individual facing/dealing/living

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-19588860448339429932008-09-03T00:31:00.000-04:002009-01-14T15:08:59.337-05:00

I have two "invisible" (hidden...indiscernible) disorders, diabetes and Stiff Person Syndrome. Disguised in presumed health, I have social anonymity from the stigma of disability. IDDM and SPS are lettered jocks on a champion chronic illness team and I am their girl. Going steady.Dates are plentiful...to my staff of physicians, the infusion clinic, the pharmacy. In preparation of an impromptu

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-8721721394767949412008-08-26T02:11:00.000-04:002009-01-14T15:10:09.571-05:00

I haven't figured out if it is pride, shame, or a combination of both; but I detest being viewed as weak, sick, needy...pitied. It is a double-edged sword to look normal and healthy when my body can be such a deceiver as to how I feel. Usually, I love the pretense of fitting in the "normal" crowd. Sometimes I feel so lousy, hurt, or have no gas left in the tank...not even a whiff of a fume. I

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-47155751404973182642008-08-25T09:59:00.000-04:002009-01-14T15:13:53.497-05:00

Some members are known as MS; others, diabetes. There are clans with rheumatoid arthritis, lupus, or myasthenia gravis. Impressive names, tongue twisters, spelling bee stumpers, or pretty words on paper..."A rose by any other name is still a rose." Or thorn? Whatever the diagnostic name, welcome to the inbred Mafia Family of Invisible Chronic Illness, natural crimes against healthy

Debbienoreply@blogger.comtag:blogger.com,1999:blog-2704040088537845453.post-76165916339436317012008-08-25T07:57:00.000-04:002009-04-16T20:28:50.165-04:00

Man in the Arena "It is not the critic who counts: not the man who points out how the

Debbienoreply@blogger.com