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.

 

 

 

Heating pads & terrored thoughts

After my 4 filling go around a couple of days ago, my back jaw tooth is starting to lessen pain wise, but the jaw & neck strain of one with TMJ has hit hard tonight. I've been laying on my angry back so I can have my head propped up with that strangely uncalming blue heating pad behind my neck, offcentered to the left with my face trying it's best to keep my unhelpful left jaw somewhere near the heat. The featured pic is reversed, as I have no good light source at present on that side, but hopefully you get the point.

 

My heart ached as I just finished a funny, grieving, poignant mystery wrapped in an unlikely love story from a British TV series on Netflix. Thinking of moving on-& the evidently us moving to Arkansas hits my heart with a panicked bolt of terror. Yes there are pain clinics...but have doctors moved there since I left who can do the spinal shots? My first Little Rock doctor did shots but at the source of the pain-not the root where the pain originated. Yes, I'm told pain killers like I take here are probably possible, but that alone isn't enough. And probably? Probably? I silently start weeping, quietly as Chai bunny has been so concerned & up on my bed no less than 7 times in the past few days-tears running down my half-hot face as I ponder 'probably'. Sitting in my primary care doctor's office Wednesday, I felt like I was holding out as I could tell she knew I was holding out, as I can't figure out how to say the words 'we are probably moving. In a few months'. Dad made the 6 month blood tests & follow-up as I waited in the car, not being able to stand lying in her office anymore. I asked him why we even made an appointment that we know we probably won't be keeping. It came out harsh when it meant to come out terrorized, but my brain is so lost it doesn't know how to communicate anymore. I just wish I could have a heating pad wrapped inside my head, go into a coma-like state & not come out until there were no more probablys, & only things have been made markedly better with your 3+ medical specialists.

 

Words with really smart friends

I love any kind of word games, & have several on my iPad. Spell tower, Word Welder, etc. I am even halfway good at some of them...but Words With Friends, not so much. After getting up, goofing & sitting in my dr's office to deal with the shingles on my bum, blood test checks, & a thousand other hings with my 6 month check-up, dad saw that the waiting time would be hours & I was so uncomfortable that we rescheduled. Shingles be damned. Got home & was still awake when a friend started a game with me. I had gotten the game on sale months ago but hadn't really played, & had only played like twice if that. As an ex-English teacher & linguistics masters student, I feel a need to seem half competent, but I'm really not. I didn't even realize you could make 2 words on one play until my much smarter friend I'd it today. They must think 'her meds must be impeding her thought process' or if I play someone who doesn't know me think they are playing a 12 year old. Embarrassing? Yes. Beaten? Badly. Fun? Yes, & the sad little competitive me tries so hard & am on a child's level, & that's actually insulting to kids. I'll keep playing though, & maybe one day beat a 7 year old.

 

 

Happy spiney valentines!

 This is a couple of days late...but wanted to share my valentines day. The night before my parents surprised me with a little, adorable, perfectly tiny Kindle as a combined early March birthday, Easter, & any other spring holiday you can think of-it's perfect for me, & I took it with me to my neuro appt on V-Day. I absolutely love it, & have already started a ton of new free books. ;)

It even let's me underline & write notes to my heart's content!

 

F is for firing flare-fall

 So a couple of nights ago I fell again, but for the 2nd time in just a few months it was what I fondly call a tree fall. I get dizzy, start to fall, & instead of my arms or hands coming up to assist me, they flake out. I just fall like a cut tree without my reflexes or time to yell timber. After going to the ER & being given the all clear, I headed to my neurologist for my monthly appt. the timing couldn't have been better. I had landed on a very thin rug that covered hard, cement tile & hit on my nose, then barely skidded on my face, landing on the right side. I landed the exact same the 1st time (if nothing else my scoliosis is telling) except I landed on Chai bunny's hay pile. Same whiplash, but minus the road rash on my face. The nurses at my neuro office took one look at me & after dad told them I had been nauseous even with meds from the ER took me back after only one song on my iPod to give me the usual pain shot I normally get after. It contains a medicine that fights nausea, so of course that helped. I got straight in almost to the x-ray table, & my lovely dr was shocked at the looks of me. He explained that sometimes when I go into a flare, I fall like that-& that it is like lighting a match to a more ordinary flare & it just exploding. After the 1st time I tree fell we I'd the whole series of MRIs to again rule out MS. He gave me a shot right in the neck (ouch) & one in my lower spine. My face still looks clownishly awful & my teeth & bridge seem off, but everything is so swollen it's hardly surprising. Needless to say I'll put the dentist off for as long as possible. 

 

With us moving I'm more fearful than ever about finding a dr who will not only treat the pain, but have the knowledge & my trust to let them inject my spine with needles. (as well as talking about me living alone again...cos I was on the floor, blood everywhere & bled for a good 3-5 hours solid & on & off through the day...)

 

 

 

My eyes realizing

Tonight I realized...I can't go on living here. I can't live without a dr in Arkansas. I can't keep my parents saddled with me. I can't hold them back. They've spent so much time house hunting, yet no time dr hunting as no one there will take my case. I can't keep going to sleep having nightmares only to wake up exhausted, depressed & worse off then when I went to bed. 

The yes when you realize there is no end. To pain, to a life, to a good living situation, to peace, to going on any longer. 

Oh, my Vinyl Love

Many of you know my deep love of music, and vinyl. Yes-my iPod and music and noise isolating headphones save me in doctor offices-the hours I've spent there and the music that helped cocoon me into my own world couldn't have happened with me and dad dragging in a record player and sitting next to a plug to be able to listen to my music...though the mental picture gives me such glee! Anyway, I own three record players-one from the 40s/50s, one from the 70s, and one from the late 80s. I love the crackling warm fuzzy intimate sounds of the needle, the crackling promising a song will come on next, the sound like a warm fireplace. Sadly all my records and players are downstairs in the parents garage, but thanks to a new app, Vinyl Love, I can play music on my iPad that adds in the grainy warm crackle, and even plays the album in order-something I tend to miss. I'm so bad about skipping around and not listening to the album in the order the artists wanted-so with this app on sale and now on my happy little iPad, I listened to the full William Fitzsimmons album, in the order he wanted. : )

new year, new books, new headphones

I spent most of New Year's Eve watching a Big Bang Theory marathon, reading my new books that were free on Kindle or the 3 books I won from Mira Ink. As my headphones-the earbuds that are noise isolating...necessary for survival in my waiting room hours-broke last week, I used some Christmas money and got some new ones for under ten bucks. I wasn't expecting them to get here until after the new year, but a happy surprise hit when they arrived yesterday. They are fantastic-they really drown out the outside noise and amplify the music, movies, tv, etc. really well. 

I slept through the midnight mark-and woke up around 3:30 AM. I got up, read some, watched Netflix, and tried to forget that my last kiss was over 6 years ago. And it wasn't a good one. Ugh. All in all though with my last glass of champagne and new headphones and new books, it was pretty tops considering. Happy new year to all of you-wishing you laughter, peace, great snapshot moments, surprising little joys, and fun this new year. xxxooo

use your words

woke up and immediately just started sobbing today. i have neuro spinal shots tomorrow-and love but am sick of drs. it's that catch-22, huh? i have an app that gives you about 20 words-you make a poem and add a pic-did these two yesterday. (app called "instant poetry")

dad on the other side

every single time I got to the Dr for anything, dad drives me and sits with me-sometimes for hours as we wait. he has spent hours of his life in the past 5 years in different doctor offices...and tomorrow, he is having surgery and he will be the patient. i hate that i can't be there with him, as I have had at least 14 surgeries and could keep him company. of course mom will go and he will be fine, but after all he has done for me, i hate that i can't return the favor.

(pic-one day last year that dad was with me at the neurologist.)