All work makes Marnie a dead girl

So as this push for us suddenly moving then suddenly moving weeks sooner is happening, my body has given out. We had/have been saving my room for last, & it was a disaster. 5 years to go through of substitute items as my real ones were/are packed in a box, now 3 states away. Cards, little post-it's, the 'get well' to the 'I know you're dying inside' to throw away, dust off if keeping. 5 years of 3 beloved pets, 2 buried now in the ever fleeting back yard & 1 curious but sick wonder bunny & the fur & dust that comes with shedding, cat litter, etc. All of the huge undertaking that I had to give up from my mail art/pen pals days, letters never answered in physical form but in my mind & heart-when it became too much to write back I would mentally plan a reply with the art & handmade paper & envelopes I would send. Clothing that got put in another room, for me to go through soon & keep or give away. 95% will be given away, as they don't fit since this body is no longer mine & has very strict rules on what it can or will wear. Mom & dad's things stored in 'my' closet. After trying to help as much as I could while watching my dad fall, cut his face, sweat, vacuum, & sneeze while mom was having heart attacks downstairs worrying. After sleeping & rolling over in a thousand times in this loosely based sleep, I've woken now to a furious back, mad as I just got spinal shots & have basically cancelled them out. I did so little work but I could feel myself pushing too far as dad's face dripped with sweat & hopes & good intentions. My brother & family here on vacation are coming back tonight & I don't know if I'll be able to make the trip downstairs to see them. This was Chai bunny's reaction yesterday, framed in hiding.

 

Spinal tapped out

Wow. So I knew the spinal tap would be one of the least favorite things ever, & what got me was the intense headaches for days after. You had to stay reclined to keep the headaches (while your spinal fluid came back up) at bay-yet for a person like me with bad back pain, staying still (even with loads of pillows under, behind, beside, etc) it was a rough week. Today finally am feeling back to my normal. Parents left today for a few days, & I can't say it's been an easy start to this Mother's day. I find out all results from the tap, bloodwork, etc in a week, but no news until then. A great surprise was winning a 'superlative' award from taking part in WEGO's health blogging month! That made my week. I won for best use of visuals, which thrilled me as my photo blogging has become my recovery process. :)

 

 

 

 

The cleaning fiasco

Went to get my teeth cleaned today. Huge phobia of dentists, & hadn't had my teeth cleaned in a long while. Those of you professional spoonie sick people get how seeing 3-5 doctors regularly doesn't leave much time for dentists, & disability doesn't cover dentists. Lovely. Anyway, after getting 2 out of my 4 needed fillings & learning that laughing gas really helps keep my back ok during the process, I agreed to get the cleaning as they promised having laughing gas to get me through it was fine. They were fitting me in, so dad & I waited for about 30 minutes, in chairs that hurt so much, which feels ridiculous saying, much less typing & publishing for the world to see. I kept thinking, 'well, you'll be under the gas soon' to keep me from leaving. So they call me back & we soon hear that oh no! The one room in the joint that doesn't have gas in it is her room. She suggests we just do full mouth X-rays. Against my better judgement I agree. Dad had to run an errand & left. She not only does X-rays but for some unknown reason does every single tiny bit of every tooth with that evil 2-sided hook torture tool, while I'm bleeding everywhere & she is scolding me for not coming in sooner as my insurance, bought from them runs out in a few weeks. She calls dad back & tells him how bad my gums are & that I need serious gum therapy. This is now an hour and a half later. She brings my dentist in as he has to check me before I leave. He comes in & all four of us are in the room, & tears start just pouring down my face...though I'm completely silent. She didn't mean to but blamed the medications, stress, etc for why my gums are so bad. & heredity of course. We finally leave, & I weep openly for about an hour after. I now have a back that is screaming in pain, & it feels like muscles are being fed through a meat grinder while still attached to my bones, ligaments, & spine. Chai bunny got in bed with me & tore apart the goodie bag with the free floss, toothbrush & paste, as if she sensed hat new foreign bag was the source of my crying. So Monday I have part 2 of a promised gas filled cleaning, & Tuesday my 2 other fillings get filled. Then the next week neurologist to give spinal hots to try & undo the damage done today.

 

 

 

Sweaty laugh

 I haven't laughed in a week. Not at all. I think we all are aware of my impending moving dr doom & my 2nd tree fall this week, thus my haggard rodeo clown face. I can't really brush my teeth as my mouth is still so swollen, & drinking or eating is a nightmare as opening my mouth cracks open the road rash above my lips. Lovely thought, ain't it? And showering? Well, let's just not even go there...eewww. So I'm on twitter to basically win prizes & follow funny people. I put little-nothing out there of any real significance. At all. I was catching up on reading twitter as my focusing on say, a book, is a useless waste of time. That fall really just hit directly on my brain. I was reading the delightful Rob Delany's tweets & went on his website, expecting it to be a normal 'I'm famous & here is where you can find me' mess. A picture of a small girl running, no, fleeing, up in the air-like serious hang time, in spandex shorts & flip flops & a tank with a look of shear terror on her face as a goose-also in midair with one footed web foot out & forward like a cartoon chased her. His face had an enchanting murderous look & the caption read 'no is not an option for a goose'. I started laughing & a half hour later had sweated completely through my clothes, still couldn't talk from laughing & deep coughing. I finally had to blow my nose & as expected there was just buckets of blood from my smashed nose all over. Mom actually said concerned 'surely one of the 4 CTs from the ER would have shown if something was broken...?' with loving hate I composed the following tweet to @robdelany & a bit later was thrilled to see he had marked it as a favorite. Read & enjoy. ;)

 

 

 Do visit him & the goose now, you hear? Thanks. 

the sound of rushing blood

today i went to my dr to see if i had this bizarre Lymphedema. as they had worked me in-and we had waited for 2 hours, and there were so many people in the waiting room that the office had to put out extra chairs, i left there with more questions and a 'damned if you do, damned if you don't" feeling. first things first-when my beloved dr walked in, i could see for a slight second what her feelings were-she was exhausted already-had a ton of people yet to see, etc., but it flashed across her face briefly the look of "oh no, puzzle health girl is back'. i know she doesn't think of me that way-but we have frankly discussed exactly that. it hurt my heart, though i knew she didn't mean anything at all badly towards me. she set her nurses up with the instructions of getting me into a blood supply/vein study ultrasound. pic below of me, fading away from me and into my pain and illnesses.

one huge side note-the only way i can stand to sit is 'indian style'. i hate saying that in case it causes offense, but other than the lotus position (which really is different) i don't have another way to say it! it kills my back, pinched nerve, all and everything when my legs are hanging down, stretched out in front of me, etc. this has always worried my parents, and she said to try and not sit like that-and i get it-but if i sit properly it makes my back much worse, and for lasting periods of time. if i sit indian style, evidently it could be causing this insane swelling and awful pain from hip-ankle. so either way...???

we left her office with an appt. to see her next week, the day after i get spinal shots which isn't going to be possible as i can't do anything, especially sit in normal chairs in a waiting room a day after needles are plunged in my spine. driving 2 hours round trip next week to get shots, then to have it all be a waste if sitting and waiting in her office would kill me. just another side note.

i went a few hours later for the ultrasound. basically it was pants off, tuck towel into panty leg to keep gel from getting all over them, and the very nice tech had to go from groin to ankle and listen to blood flow-which sounded awesomely cool by the way, but then in three place-above knee and below knee and in the groin-push down with the ultrasound stick as hard as she could for a reason she said but it hurt so bad i didn't hear. it might not hurt the normal person, but for a fibromyalgia girl with swelling that hurts anyway-along with tender/trigger points, i barely managed not to cry. she couldn't tell me anything but will send it through the radiologist, then dr, etc. etc. etc.  pic below-my hand covering my girl bits and the veins and pathways of my blood flowing.

i got home, and after only sleeping about 3 hours the night before slept from 3 PM to 3 AM. i am so sore-everywhere she pushed really hard is throbbing, and i feel like my body was put through a pasta maker to make the flattest noodle-so no real news yet-and a lot of questions and pain. ; (