And so this is Thanksgiving

Something has broken. Something snapped-the straw has broken the camel's back. Hope has disappeared & the bleakest, blackest darkness is here.

I was blogging daily for WEGO & the November NHBPM (national health blog post month) & was into day 5-10 when the flare came on, & for the first time I understood what 'losing consciousness/feeling' meant. The level of pain was so bad it simply wore me out & I couldn't stay awake. By no means was it peaceful slumber, rather sharply stunted sleep between fits of electric nerve endings firing off at insane intervals. Nevertheless, I stopped blogging. I stopped being able to do much of anything. Going to the bathroom was work. Making food was a joke. Something changed when the last weather related change came, & I came undone.

A Czech friend had asked & sent her PHD paper for me to look at-having been so eager to help I now haven't even opened it. A friend L noticed I had stopped communicating & sent several gorgeous pictures of fall leaves-I only saw one, & for me it represented how I felt. Instead of the beautiful colored leaf it was in black & white with almost silver overtones. He too lives somehow outside yet exists inside life. He understands the suffocating loneliness. He sees things skewed & different than the normal family bound individual.

Having not seen my new neurologist lately, I saw him Monday. My old dr I saw every month & sometimes every 2 weeks. Deep down I knew he wasn't the one-he wasn't treating me at all, rather seeing me every 2-3 months & on HIS timetable just giving me morphine. He left every appt abruptly, never returning yet leaving me alone in the room for 30 mins before his staff found me & gave me a random appt. so after barely showering, my clothes feeling so uncomfortable & seeing in the light of day my hair almost half grey which stunned me I went & waited. He came in, asked me about side effects-I think he had nothing to say yet felt he needed to & just asked a random question. I mentioned my face-I have periods where my face has the bright red butterfly rash that appears & lasts for days much like the Lupus butterfly rash. I mentioned it as my face was so hot & so red & I felt surely he would notice. Nope. He asked if I had Lupus. What? You, my neurologist, you're asking if I have lupus? Stunned I answer no, I was tested for that years ago, & explain that fibromyalgia often produces this same rash much like lupus. I explain that to said neurologist. Dad had come back into the room at that time & was just waiting with me, as he hen just stood up, said he would be back, & after speaking/listening to me for maybe 3 minutes leaves us, & his nurse comes 30 minutes later with half of my prescriptions & an appt to see him in 3 months. Right then was when this thing broke. I had gone for 2 months without seeing him & after that pitiful excuse of a visit he now doesn't 'need' to see me for 3 months? The nurse/staff says my morphine isn't due for a few days so I can't get the RX now. Let me explain-that kind of RX comes with a special 'do not fill until this date' kind of safety thing. My old dr gave me my RX a week or 2 before trusting & knowing I wouldn't & COULDN'T fill it early. As we get in the car & look up the dates we see I will be out of morphine this weekend, & as we know their office is closing Wednesday for the holiday dad calls & asks shall we pick it up then? He is told no, sorry, you will have to wait & call/pick it up the following Monday. Dad pleads, saying 'but she will be dying by then...' only to be told sorry & be hung up on. Obviously I will never go back to him, but what now? I have seen so many drs. I have been sent away by so many as a challenging case. I can't stay on this merry-go-round of piecemeal health care any longer. For the first time honestly my hope in anything is gone. I have nothing left. With no family or kids of my own I feel so alone. So lost. My old best friend was in Colombia & a girl/dalliance kept saying to him 'just be, just be!' & we always laughed about it...but when literally just being leaves you exhausted, without help or any hope to speak of, what then?

 

Posted with Blogsy

Letter to my illness-day 8

 

Dear Fibromyalgia,

I've started to view you as an alien life form who for whatever reason-low immune system shields-availability of bases & posts around my body-unguarded borders...you chose me to invade & live inside. After using me for many, many years, you busted out of me to let yourself finally be identified (like the being in the fantastic film Alien) close to a decade ago. Funny-you had been using me as a vacation home for years, & in those times I would get really sick with random illnesses & symptoms.

Some years you would go skiing in my throat & glands...I would get strep throat yearly during your trips, & when you committed to buying the ski condo & all of your financing came through I became a carrier of strep throat, & you then started really almost annexing my mother. She kept getting strep, taking antibiotics, getting better, then starting all over until her doctor realized a carrier was afoot. He asked her to bring in the entire family to be tested & of course her gut told her it was me. She had been getting postcards from you since I was a few years old. You took a long winter holiday when I got mono, this time touring my entire body, taking time to really see the sights. After that visit I never really was the same. Deep down I feel there is some connection to that illness trip & fibro-after that my body never seemed to recover. After that you came to visit much more frequently, as if you lived part-time on your planet & the rest on me. I never even got a t-shirt! No hostess gift? Really bad manners!

You set up a permanent vacation home in my uterus & started visiting monthly when I was in 6th grade. You had starting getting serious with endometriosis & that little dalliance cost me untold surgeries, insane medication treatments like birth control at age 12 which never helped & only kept me nauseated for months & did the opposite of what it was supposed to. Instead of stopping my periods you & endo revolted & I was having 2-3 periods a month. My doctor was such a prick too-saying 'oh no, you're just spotting'-so I made my poor mom take me back in to make him examine me to which he said 'well, you aren't spotting-this is a very heavy flow' which gave me a bit of temporary delight! He would later go on to gift me with such gems as 'if you have a hysterectomy you will fall in love & no man will ever love or marry you' which is MAYBE why I married someone I shouldn't have & of course ended up divorcing...I think you were up in my brain by that point. Why else would I do such a foolish thing just to get back at said doctor? I found another doctor who indeed did the hysterectomy, only after 3 others refused to do the surgery. They didn't want your theoretical blood on their hands.

After endo split I seemed to be better. Your hiking trips in my vascular brain systems would leave me with migraines, & your float trips in my stomach left my bladder & colon in quite a state-I never did get my security deposits back by the way-but you did seem to retreat a bit. Maybe you got depressed after I seemed to defeat endo. You guys hooked back up for a little while & I had 2-3 more laser surgeries, & endo had been left behind & continued to grow in my sciatic nerve notch, & almost perforated my colon. By that time you had started drilling in my left sciatic region & I spent so much time having my periformis muscle cut & that major surgery, going & fighting with a pain clinic who ultimately (after you evaded them) couldn't figure me out & thought I was just crazy & that it was all in my head (little did they know you actually were!) & various nerve tests, more treatments, etc.

You built a beach house in my bladder when you met interstitial cystitis (IC). Not having insurance then was such a treat! My defense team spent so much money fighting too! Poor team had no clue what they were up against! You & IC still see each other & I think you always will. Kind of one of those see each other every 6 months kind of deal, huh? You finally declared yourself & opened up Area 51 about 8 years ago. I fell & had boxes containing reams of typing paper (100 or more pounds) on top of me, pining me to the floor while in graduate school, & after a local clinic sent me to an ortho, having MRIs, bloodwork, you know he usual suspects he ruled out lupus & found you. You cost me friends, which still stings, lost me jobs, dignity, grace, humanity sometimes. Instead of going out to dinner, the movies, weddings, births, etc I stay in with you & let me just say you are a shitty companion. You've dated depression, anxiety, flirted with MS a lot...you get more action than I ever will! I would ask to live vicariously through you but...gross. You've immigrated to me 100% now. You aren't going anywhere, are you? Do you ever feel guilty? You must really be the scary kind of alien, not the ET variety. If only I could disguise you. Dress you up & hide you among Chai bunny's stuffed friends. I feel like (in the little painting above) after you came out, I just had to surrender my life & old world to you without being able to really fight-I will always continue to fight, but that battle in graduate school, lying on the thin, dirty carpet I lost. I started just weeping, which my old friend interpreted as my frustration with my job & thesis trouble, not knowing I saw the real face of you-in your terrifying strength, & knew I would never be the same. I saw my future in your eyes, & my tears were more for that than pain streaking through my body.

So maybe you could throw me a bone & bring me a GOOD souvenir one day? A snow globe at least? Even a map of your adventures could be used to study, maybe even make breakthroughs. I know we will never, ever get along, but maybe you could think about a ceasefire every once in a while?

Posted with Blogsy

Day 7-the waiting room worth waiting for

As a chronic illness/pain patient there are so many different things that change a simple couple of hours in a waiting room can go from a normal experience to a painful, flare-inducing, long lasting effects kind of scenario. So many of us have things we won't leave home without to make the torturous wait a bit easier-for me, noise reducing earbuds & my iPod are number 1-& I even would bring a light blanket or a sweater in the summer as hours under the A/C vent are enough to leave me wanting to wait outside on the hundred degree curb. As much as we prepare, there are things far outside our control-& here's where day 7's prompt comes in-redesign a doctor's office/waiting room. Other than the doctor coming to us, here's a few things I would change.

1-seating. Chairs of all kinds, primarily ones without sides or room enough to be able to pull your legs up & sit lotus style/Indian style. I cannot tell you what fresh hell awaits when I sit for more than about 3 minutes with my legs extended down to the floor. Lightening bolts through my sciatic nerves from my back down through my toes & back up-so that is always the happiest sight for me-big, wide, fat chairs.

2-a no smell zone. Strong smells (pleasant ones even) can send a brain's pain center into overdrive-so somehow magically erasing anything from perfume/hand lotions/smoke off of people as they come in would be fantastic. My last office before moving had people smoking outside which was fine-but as they walked in the breeze would gust the smell inside & patients started to crumble.

3-Other than lovely, no-fragrance candles, a soft lighting scheme would be great. Nice lamp light is so much better than harsh, overhead lighting. My last neurologist could come in & see how the lights bothered me & would automatically dim the lights-heaven. Obviously in a waiting room you can't really do that-but lamps would cut out so much glare. A girl can dream!

4-little things, like a basket of blankets & throws to updated magazines & books. Many of us have to be driven there, & I always worry about my dad-did he bring a book? Are there fun magazines for him to read? Could he just stretch out & take a nap? Our caregiver's comfort is also a factor-& having a huge selection of magazines would be great. Even a wifi hotspot, water, or coffee corner would be great.

 

 

Posted with Blogsy

What's your bag? Day 4

Since I'm at home all the time, my bag/purse is the space in & around my purse on my bed. I'm not specifically bed-bound, but since having anything-like the arms of chairs-touch me causes pain, the most comfortable place is in bed sitting up. That way I have a stack on pillows behind me if I do need really soft support & pillows under my knees for when I am sleeping-& they double as a make-shift tabletop, iPad holder, place setting, etc. I am addicted to lip balm, such as Burt's Bees, the Merry Hempsters, or just good old Chap Stick. A friend of mine sent me my newest obsession a year or so ago, & it now serves as my all purpose balm. It's called Smith's Rosebud Salve-it comes in an adorable tin & I use it countless times daily as hand lotion, lip balm, as a skin softening agent, the uses go on. People with fibromyalgia often have a broken pain center...for example my brain can take a fan blowing on me as a painful stimulus-or a smell like cleaning solution as an assault. This Rosebud stuff has a very slight floral fragrance but so light it doesn't set off the pain alarm in my head. Any kind of extrasensory influence can easily transform as pain, & so certain things just make life easier. At the top of my list is noise canceling earbuds/phones. When I'm in a waiting room everything hurts, so having my iPod & earphones are crucial. Even just here our backyard touches 4 other yards, so lawn mowers, weed eaters (the devil's handiwork that is!), & other lawn care things drive me nuts, so often if it gets to a certain point I put the earbuds in & tune out anything but the music to refocus. In my bag medicine goes without saying, & I keep a nasal/allergy/sinus spray since those systems work overtime fairly often. Hair clips & ponytail holders are a must, as well as tissues & a mirror. I don't wear makeup (sadly) anymore, but I tend to always need a mirror for bunny fur in my eyes. Chai bunny's mark is never far away :)

Posted with Blogsy

Maybe miracle

After possibly the toughest 3 weeks on record, sometimes you catch a break. After realizing I'll be without meds (quite dangerous) for a two week period until seeing my new neurologist, I left a tearful message to my beloved former neuro, begging for help. Normally they can't give you certain medications unless you see them in person, & I knew my body couldn't handle that drive, much less leave Chai bunny. Yesterday the nurse called, & Dr. T agreed to give me a two week courtesy RX-& a family friend will pick it up & mail it to us ASAP. Until it gets here I'll be nervous, but the fact that people are helping restores my faith in mankind. Chai bunny is doing much better-she still has several mammary tumors, but hasn't has anymore blood in her urine, & is eating & drinking normally. We aren't out in the apt yet, but being close to my parents during this time is a great thing. Dad's been painting my apt-gothic amethyst & purple blanket-the first a silvery light purple & the second a deep eggplant purple-I love it! Mom has been finding all my treasures from my former life & some new ones :). Today I'm resting a bit easier.

Posted with Blogsy

Swollen, dirty tears

After my neuro appointment, eyes so swollen & tears so spent

 

 

Let it out

Today was an incredibly rough. Not just the usual pain & angst, but in trying to get my doctor here to send records to some unknown pain clinic 3 states away & failing, I realized there are a ton of pain doctors/clinics/but some do the meds but not the spinal shots, some do the shots but no meds...you get the point. I became incredibly frustrated. I can only see Internet info which is often very one sided. I realize as my friend described it I'm back on that house of cards. Before I even really started building the cards ripped, & my panicked mind along with it. I had to just give in to the panic attack, lay my head down & get in a fetal position modified to my screwed up body, & just let it out. For now.

 

 

Time's humor

I was taking a pic recently & ended up capturing the wrong edge of the intended picture. Doesn't matter what or why, but I found the accident photo compelling. My eye in the pic is looking up, looking to see if I'm holding the cell camera right...which I wasn't, but my eye looks normal. Not so sad. Not filled with tears & dread-I was so focused I was too busy to look like my soul felt. I was playing with my hair. Let me explain-I found a subject a day chart on the net & thought I'd try it-& that day's was descent...however you wanted to cover or interpret it. My hair has changed so much since I got sick & I was thinking about the descent of my hair from well to sick, though my hair itself is really healthy. I don't style it, blow dry it, put any product in it-so it is totally boring & natural. Anyway, thinking about the last time I had it cut professionally-I can't remember.myears. A decade maybe. In a few hours I'll leap out for the first time in years to call a pain clinic. Evidently we are moving this summer, & I need to call them to see if they can take me, what I need to do to start the ball rolling-all the stuff that terrifies the one's who feel a good doctor is far more important than most anything else in life. I'm so scared-what if they aren't accepting new patients, or what if they are not a good fit? I've even had dreams of calling them with disastrous results. For me the unknown used to be so exciting. Move to a new country in 6 weeks without knowing anyone or speaking their language? Can I come now? Start grad school in my 30's with no money? Sign me up! Snorkel the great Barrier Reef even though I'm scared of fish & sharks? I only live once! I was pretty brave. Really fearless. Now making a phone call that signals me leaving my beloved doctors is much scarier than getting on a plane to commit to a country I can't pronounce most of their words. & away I go.

 

Leaning into nothing

Sometimes what I think is a solid thing to lean onto-something that will hold me up-I see it's actually dark & missing. I'm leaning onto the abyss.

Earlier tonight mom noticed-again-that as my permanent sitting position is Indian style-it leaves red patches on my legs where my legs are smushed together. It worries her. I get that, yet I cannot sit with my legs extended without sharp pain in my lower back. Anyone with back problems-imagine when it is worse-after standing a long time or after doing certain household chores-imagine that searing pain whenever you stick your legs out. Even a tiny bit-that's what I feel in my back unless I'm sitting on a bed with my legs crossed Indian style. I would love to be able to casually fling down on a couch, my legs propped up in front of me on a table, or curl up in a comfy chair with my legs dangling over the side while reading a book...but I can't. That's one reason doctor visits are awful-sitting in the waiting room physically hurts. It sounds so ridiculous but totally true. It depresses me so much that this fact gets questioned & exists. I feel I'm in such a dark hole & surfacing is so far away.

 

A day in pics

Sometimes I just don't have much to say-anything of value to offer. One great piece of news: after fighting with/explaining/jumping through the hoops over & over, my student loans & the company that has them after a 3 year battle finally accepted my disability federal judge claim & forgave the debt. I hate not paying back what I owe, but there's no way since I can't work. We're thrilled but I feel guilty at the same time. Today 3 years ago my first house rabbit, Amsterdam, died, & Chai bunny came bounding into my life a few months later. Here she is playing in the spare room...& not chewing the cord. ; )

 

 

TMI Tuesdays-WEGO Health-behind the curtain

Many of you know the basics of fibromyalgia. The pain, merry-go-round doctors, trial & error medications, etc. all of that is a huge part, but even for all my openness & knowledge is power, there are a few things that only my parents know. There are things so humbling & humiliating that I keep most of them to myself. One of those things is the lack of personal hygiene. Often times taking a shower, even with the little plastic stool I use as a safety precaution & the fact that I can't stand for more than about 3 minutes at a time-even sitting down showering is exhausting. Many days can & do go by when I can't shower or bathe, & it's a crushing weight to one's self-esteem. To not be able to jump in the shower is a luxury I used to take granted-or a soothing bath. Things like this that go unsaid make me want to curl up & hide.

 

Housebound holidays

So often being a sick housebound person feels really tough when everyone is at the beach, at a cookout, or at a holiday party. Granted the holiday is about the men & women who serve with honor & bravery to keep us safe-& yet we all take advantage of the awesome sales & South Park marathons. Obviously we can balance both-but being stuck at home feels like any other day. I decided to treat myself a bit, & got 7 Nordic crime ebooks discounted hugely today. I let myself relax more & enjoy marathons, & try not to feel guilty that I'm not able to work or do the things most normal people do. I also really let the thought sink in that I could be a sick person stuck in another country where I have no rights-access to medical care or help. The thought of living my life without the huge advantages I have could be a much worse life.

 

Missing House

Yesterday I went to the neuro. After running the tests 3 times & my proteins being slightly elevated I have for now (again) been ruled out MS-wise. Of course we were thrilled, & after the dr gave me 2 shots in the sciatic nerve & pinched nerve. I was really hurting-I hadn't realized that for me/a fibro person, the spinal tap took a lot more out of me than I thought. Our cable went out, & sadly I missed the series finale of House. Look, I know his character was an ass, yet I grew to love him. Better or worse parts of how he acts reflects me sometimes. I guess having the world see how chronic pain can change you helps me cope somehow. I love & will miss how he, as well as my real doctors see me as a pattern & puzzle for good-not something to chuck out & refer endlessly to other drs to get me out of their offices. Being dismissed because you are too complicated is a special kind of rejection hell. This pic & poem (instant poetry gives you 35+ words & you make something with it) was taken tonight, after I slept about 19 hours. Enjoy & excuse the crazy. :)

 

Get out.

Physically & emotionally the past day or two have been awful. Scale of 1-10, a 17. When I went upstairs yesterday to check on Chai bunny & try to examine her & see if she is still sick (long story, but she's possibly sick & I'm still freaking) I took this shot of her. She was mad, sick of me trying to examine her, & mad that I've been spending all my time downstairs while the parents are gone, & I'm taking care of Macy cat,who is also sick. We should just open a damn clinic here. This picture is so cute & funny, & after I took it Chai took off to the corner & thumped loudly to show her frustration. I don't blame her. Sitting here crying I see myself looking into the tunnel watching fibromyalgia among other things take over my life, no matter how hard I fight to keep going. God I just want to give up yet also just beat the shit out of it-& I can't really do either. It's so frustrating. The toll constant intense pain has on a person can honestly drive them to madness, in a heartbeat. How long does that heart manage to keep beating?

 

Time capsule-makeup day 1-#HAWMC/WEGO

We are to put together a time capsule about our specific health focuses, illnesses, stories to be opened in the year 2112. Of course I would provide news clippings of medicines that were used, treatments available, etc. All of the cold hard facts...but much more I would let my pictures, my old journals from when this illness really took hold, my personal story put a face on fibromyalgia. I would include my normal daily life. How I wrap into myself, iPod on & noise reducing headphones in-dad being my ears for listening for the nurse to call me back-what music I listened to in waiting rooms. The paintings I did when the pain got so bad I couldn't sleep. What movies & books I took lessons from in survival skills. Most important I would let my self portraits speak for themselves. They would be the face of what this does to a person, & I would include pics from before I got so sick as well, though I look mostly the same-but showing my life overseas, teaching, being a productive citizen of this country.

 

 

 

 

 

Day 28-the 1st time I...#HAWMC/WEGO

The first time I took a picture & realized it could be my very own form of art was when I first started living overseas. I would spot things that weren't necessarily the focus most people would take, but what little details I noticed & loved. It was how I liked to travel-off the beaten track & off getting lost & finding wonderland. I remember being on a trip on the island of Bali, Indonesia, & we went to some places most tourists don't go. We stopped to watch women threshing wheat, & I took pics of them, but also I got down into the wheat field & took pics from the perspective of the stalks. Those pics are in boxes now, waiting until we move & I can finally display them as I used to in my own place. I had been missing art. I had broken almost every bone in my right arm, & it had really messed up my ability to draw, paint, etc. When I saw that I could make art by the angles I chose through my lens, I found my art outlet again. It was just thrilling. I to better & fell more in love with discovering things I otherwise would miss. After becoming housebound once again I felt lost & without an outlet until I turned the camera on me. I love photography. For me it is the outlet I needed at a time I felt so lost & frustrated without an outlet of creativity. The pic below is from last Christmas. We were RA my neurologist office, & I had just gotten spinal shots. While waiting for dad to bring the car around, I scrunched over on a small ottoman type thing beside the tree & saw a gorgeous gold ornament that had fallen off in the back, but from my scrunched view it was reflecting the lights from above, & I instantly grabbed my camera & shot a few pics until dad pulled up. It's my favorite Christmas picture, as I would have never noticed it if I hadn't been doubled over in pain. That's the day I thought up my tagline, 'pain worth a pic'.

 

Day 22 things we forget #HAWMC/WEGO

There is a popular site where people post pics of notes & post it's with a message left in various places. Some funny, sweet, touching, etc. We are to do so & if we can't post it, pretend. Where would you leave it? What will it say? I couldn't decide, so I'm doing 2.

When I was 14, I was having horrible cramps & I would miss days of school & work monthly. My first gynecologist told me 'when you see blood, you see pain'. He quickly became my ex-doctor. Fast-forward 4 years & after having every surgery & procedure (including self injections into my stomach for 6 months) I had a complete hysterectomy. In passing as he was the local dr in our small town he said before I had the surgery (though e wasn't my dr) that 'you will fall in love this first semester of college & no man will marry you because you can't have kids). I was strong enough to know to listen to my body. I had severe endometriosis & I knew something wasn't right. My post it would say 'always trust what your body is telling you' & leave it in as many waiting rooms, hospitals, nurses stations, etc as I could.

 

My second post it would simply be 'Savor it all'. Savor that movie-that meal out with friends. That first date, kiss. Savor that trip to Target. Really enjoy sitting in that coffee shop. Savor the powerful fun in driving your car. Today, national record store day, I really missed not getting to go & flip through cd & record bins & finding that hidden gem, or new import vinyl, or an oldie you've always meant to pick up. Some days being really & truly housebound for all intense purposes hits home. For some reason, that was today. I would leave that note in mundane places where people take living for granted. At the cashier line, or a table at a local dive bar. In a bus seat or a cab. On the dashboards of cars or on people's front doors. Here is me, trying to savor listening to some records, & holding a lost dried petal from a photo shoot I had earlier in the week before the flowers get tossed & we move.

 

 

 

Day 16 writing style #HAWMC #WEGO

For me, something, a picture or event just goes from brain to blogsy. I'll be watching a movie & have to stop & write my blog...example: after 'fight' tonight with family about moving

Today I realized that from now until we move there will never be a day when I'm not asked to go through boxes, asked about items-should I, can I, may I keep things? Things I love. Things that bring back memories. Happy memories, sad memories, bittersweet memories. Each item has a story, & each story carries grief, laughter, love, & letting go. Mom & dad see my reaction to this as anger-when it's the opposite. Each item I see Zoe, from the first day I got her until the day the vet put her to sleep. I see my overseas life-when I did something that mattered. I helped people...there was a need for me in this world, & there really isn't that need now. I see old friends-some I hold so close to my heart even though I've lost them in one way or another. I see Kris-my late brother. I see my old future potential. I see my test results that admitted me into graduate school. I see gifts from my university students. As much as I hate to say it pain overwhelms any feeling of joy at looking at these precious items. Mom & dad think my resistance to change boils down to drs & morphine, when it's grief over losing professionals who see me as a person who is legitimately hurting & in pain. Mom feels she is the whipping post, dad feels like the joy he used to feel can never be found again, & I feel like an anchor weighing them down from sailing into their sunset years together.

 

 

Day 13 (ahhh Friday!) 10 things I can't live without WEGO #HAWMC

Ok, other than my parents who took me in after I got disabled & housebound, etc, here are some things that keep me GOING. Whether it is acts or material things, here is a how to ten for me...

1. My house rabbit, Chai. She is my little nurse. Jumps on my bed to check on me, jumps up & frolics often, & fills me with joy when I have none.

 

2. My iPod. When waiting at various doctor waiting rooms, blocking out everything & letting dad be my ears is crucial. Sitting in uncomfortable chairs & smelling the various scents of people & their vices-smoke, too much perfume...my brain's pain center goes into overdrive. Closing my eyes & turning up my music with my body folded into myself gets me through.

 

3. My iPad (no, I'm not an Apple spokesperson!) keeps me connected to the outside world. My Flickr pic project, blogging, Facebook, twitter, not to mention losing myself & trying to focus on games, Netflix, entertainment, etc. I count my blessed stars daily for this magic machine that isn't too heavy for my weak body to carry!

 

4. My cheap not smart cell phone camera. To not document this illness would mean the end of me.

 

5. My new baby Kindle. After not being able to hold books open & read, ebooks got me back to reading. I used to read 3-6 books a week, then one for 5 years. Since getting my kindle in mid-February I've read 3 books already!

6. Art. I do all of it through painting apps on my iPad as I can't stand the paint fumes or hold brushes, etc, I can paint again with oils, watercolors, etc. :)

 

7. As a vegetarian, I eat Amy's organic veggie/vegan meals once a day. Also Lean Cuisine veggie meals, & the veggie Kashi meals. They save me-I microwave them & as I can't stand for more than 3-5 mins I can sit & wait. I so miss cooking properly, but I count my blessings that these products are available. (no pic but Chai bunny's a veggie eater too!)

 

8. Little surprises...at times like this one, when looking down, crying, the blown glass light fixture reflected in my iPod at my neuro office, are always a little extra I live for...

 

9. Pills, from pain meds to magnesium to ice packs & heating pads. A necessary evil.

10. My doctors. They understand me-they know me-they honestly care. I don't know what I will do without them when we move. How will I ever find them again? My sadness at the thought.

 

 

#HAWMC WEGO Day 6-Health Haiku plus (Tanka)

I just saw the April WEGO health writing about health all month in April, & as I'm a few days late the 5 days I have missed I'll do in May. Today's focus was a haiku, the traditional 5 syllable 7 syllable 5 syllable Japanese poems, or doing a Tanku, adding two extra lines with 7 syllables each.

 

Yesterday mom & I had back to back ENT dr appointments, as we both have terrible chronic coughs, etc. Mine is caused by allergies-when I moved down here 5+ years ago I developed horrible allergies & this deep, chronic cough. I even put Alabama on the new patient sheet under 'allergies'. I don't think the dr found it funny...but when I lived overseas, mainly the Czech Republic, I had runny nose & colds but little to no sinus or allergies. It was just fantastic-to carry pocket packs of tissues for the cold weather only!

 

The two hour round trip took a toll on me & today I'm fevered, sore, & feel like I was dragged behind the car & not just in it. Riding in cars makes my bones feel like they are breaking, but I do try & bear in mind that every little discovery is yet another piece in this disaster of a puzzle that completes me. Here is my very first haiku, or tanka, along with a pic that goes with my day.

 

 

The pokes the prods hurt

 

A necessary evil

 

Leave me aching so

 

Extra doctors add knowledge

 

To my jigsawed puzzled life