Day 9-Care Package

I have received some very sweet, fantastic care packages in the past few years. They mean so much! Here are a few things I would include if I had the resources & means to send packages to all my chronically sick friends.

1-some fun foods & candy-many of us have to eat something with medicines, & cooking something at times is really impossible, so having at hand some cashews, candy, great buttery crackers, holiday cookies, soup, or a great loaf of bakery bread is a godsend.

2-really good lotions & lip balms. Fragrance free or something healing like lavender & chamomile is something I love. A fun selection of lip balms is always appreciated, & something like a long lasting candle is a very sweet touch.

3-an amazingly soft throw/blanket. Temperatures really affect many of us, & having a great go-to blanket & heating pad is a comforting thing.

4-super soft socks & slippers. Even though it doesn't take pain away having big fat fluffy socks can help the cozy factor tremendously.

5-a super digital library of tv series, movies, & books. My life would be far worse without Netflix streaming, digital books (holding a book open is very tough), & tv. Refocusing my attention is crucial for getting through the day.

6-a body pillow. I have 4 pillows behind me & 2 under me to create a recliner type sleeping situation. Lying flat isn't an option.

7-coupons for services-like a catering service for a birthday or something, a handyman to fix things you just aren't able to do-even a home nurse visit would be an amazing thing!

8-an honest, loving letter. Saying 'I don't have any words really but I love you' is so appreciated. We know you have no magic answers-we gave up on those long ago, but an I love you/I care so much is the best thing.

A very soft hug. Many of us have NO human touch apart from our doctors. Think about that-no human touch, hugs, etc for months at a time. It is like starving really. Even a touch on the hand brings me to happy tears. Illnesses are very lonely, & a chronic lengthy one? I cannot put it into,words.

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Views of my visibly happy afternoon & purple house

After walking through the backyard to my parents/caregivers house to pick up meds & magnets, I walked around the yard looking for our adopted outside discovery, Pepper the turtle. I didn't find him but I did smell the gorgeous flowers left behind from the previous owners. My back was going out quickly, so I dashed (a very slow dash...) home & after resting put up my favorite Wilco poster from my brother with my super heavy magnets on my fridge.

It's right next to the soon to be record player orange corner! Very excited about that. I then put on my ultra expensive lidocaine patches-they take a bit of the edge off of pain, though they are $500 for 60 patches-& I have to get my neuro to sign off on them so insurance will pay. Ugh.

My old dorm room white board is on the fridge, where we keep notes-today was hoping our cat Macy gets better-she has badly damaged kidneys & it looks as if these are her last days, so we are really sad. Next a celebration of invisible illness week, & after last week it finally feels a bit fall-ish in the air. Ahhh yes.

I've been in my little purple house a month or so, & for the first time I lit candles. Mom is always fearful of this as sometimes my meds make me sleepy, but of course I'll be mindful. I haven't really been able to use candles since moving in with them 6+ years ago. Amazing how lighting a candle brings me independence & joy-something most people think nothing of & light candles daily-for me it's a huge deal!

 

The candle in the dark as seen from my bed-on the coffee table. I'm really starting to feel this little house is mine-that it is my safe place where my illnesses are ok-that is my skin is hurting I can be naked & not worry as Chai bunny doesn't mind, & being on the back of a fenced yard my windows are safe & private. Being sick sucks, but making small changes to accommodate mean the world!

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Yawwwwn

Ever since the spinal tap I've been exhausted. Way, way, way more than the normal me exhausted. I got shots in my pinched nerve & sciatic nerve Monday. I've been sleeping at least 19 hours a day since. Amazing how your body reacts to various things & I guess how my body is trying to protect me from myself. I slept all night on & off the recommended heating pad (usually it's ice down my pants but dr. T said heat this time around) & didn't take my last pain dose as I fell asleep. Waking up moments ago, all my mistakes arrive knocking at my door. Pill? Taken. Sat up & hunched over & stretching? Doing. Cold club soda out of the 2 liter? Gurgling & making that fun bubbly sound. Chai bunny is at my feet happily munching on a treat & very happy I'm awake. I sat up in bed gingerly yesterday & ended up indeed protecting the new shot sites yet forgot & twisted or wratched the spinal tap site. My face & lips are swollen from meds & the steroids in the shots, & my hair looks like really bad uncute bed hair. When I feel guilty that I can't work, help people, you know, be a productive human being, I try to remember days like this.

 

Scars old & new

I'm in a bunch of groups on Flickr, & today I got an email saying I had been banned! I realized that the 'scars & their stories' group banned me (without an explanation but I'm guessing) that they wanted strictly pics of scars, & not bruising from the aftereffects, etc. I understand & am fine with it...but it made me want to photograph a few of my many small & big scars, from the mundane to the unmentionable in terms of the location ;)

This is a large scar (about 6 inches) from my hip being opened up, in the efforts to cut a muscle that was causing such severe sciatic pain. It is the exact scar I'd have if I had a new hip or hip surgery, so if I need one I've got the guidelines. Above my hip & scar are some scars of sort on the wall, old & new, of my past life & current one. I didn't mean for them to get in the pic, but loved that happy accident.

 

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. 

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...)

 

 

 

Hearts follow

 I started seeing hearts (& I've never been an I love hearts kind of girl) right before I started getting sick, really sick, about 6-7 years ago. I still catch glimpses, though not as much now. I would see them walking across campus at UALR in leaves, etc. today, after waking up in the middle of the night to the worse panic attack that still hasn't subsided hours later, this showed up, as I reached in the toilet paper bag for a new role, & pulled out this random roll. & no, this wasn't taken during any 'act'. ;)

 

 

 

Bunny, shingles, & lungs

 Since I moved in here 5 years ago, I developed (probably due to an allergy) a horrible chronic, deep, body-wracking cough. Last night I felt like my upper back was hurting...& long story short, we realized my lungs were so congested & stopped up that simply put, my lungs hurt. I have an appt next Monday with an ENT, to figure out if there is more I can do to keep this cough at bay. I was treated for pneumonia in February, & it feels the same. Stupid lungs, breathing in fresh air! ;)

My shingles are back on my thigh, & they are so tiny but managing to get a pic today to confirm was a great accomplishment. Wanna see? 

 

 Sweet Chai bunny honestly, it's happened & has been witnessed, will thump when I'm asleep but my lungs/breathing are raspy. She is, we are convinced, magic. She has been on high alert as my coughing that (scares mom's cat downstairs) doesn't really scare her but keeps her hopping away as her giant ears are being split with my decibel raising coughing. She also will wake herself up thumping, will continue softly thumping as she makes sure whatever she was dreaming about is gone. That bunny keeps me smiling even in the absolute worst situations. I'd be lost without her. 

 

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. 

An awfully good not so bad day

Here is part of my day chronicled in pics.



Riding to the dr at 7:43 AM.



Dad by my side as I was hunched over, trying not to cry-listening to Wye Oak, Sarah Jarosz, & others.



After dropping off prescriptions, I waited in the car while dad did some grocery shopping, & even surprised me with fried okra...only in the south can you procure that at 10 AM! Love fried ocra...


Entertaining myself while waiting for dad. Thank you iPod & great music!



Looking down & taking my mind to Brazil, the best vacation ever (where I got & designed this aquamarine ring).



Looking in the rearview mirror watching so I could unlock the car for dad, & my surprise okra!



Loving that having my rabbit reading pocket watch necklace, we could time & not get to the pharmacy to early. Dad said if the dr had some answers & got me on meds & it rained it would be a great day...didn't rain, but otherwise, even under the circumstances, he & I had a really good day. : )

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Location:Dr, home