Mom & dad surprised me with champagne for new years! It's always a hard night...& this being my 5th year of housebound, alone celebrations, they gave me the bottle to spread out over 2-3 night. I have a new photo app called 'ripped', where you can rip what sections of a pic to show...it's awesome. Woke up at 3:30 AM as I hadn't taken my pain meds & am know dying, but I can remember & will the bubbly fun I felt while drinking in my love-champagne!
Saturday, December 31, 2011
Friday, December 30, 2011
My parents have a lovely, unique, quirky cat named Macy...& Chai bunny likes her, but Macy is scared of Chai. Macy went into my...or Chai's room & Chai went growling & chasing her out. A few days ago they were both out in the hall & got nose to nose-so cute & peacefully. Today Macy came up when I let Chai out, & as soon as Macy saw Chai she ran under the bed, not realizing her long tail hanging out gave her away. Chai then kept looking at me, wondering where her friend went...
Thursday, December 29, 2011
after a gift-a really special one-to a family member wasn't received or even wanted after I showed them-I showed them the photograph I had chosen (a few actually) to see what sizes, etc., I was told she didn't want them. After a week of this person letting it be known my presence here isn't really wanted-how my dad needed to choose between me and her-it just hurts. Being somewhere and knowing one party doesn't want you there is quite gut-wrenching.
Wednesday, December 28, 2011
at times, whether it be from rheumatoid arthritis, fibromyalgia, etc. (and quite frankly i am beyond caring) my nerves from elbow down the arm and moving on the top and bottoms of my hands, wrists, and into and up to my fingertips burns, hurts, stings. it feels as if i have hot sharded pain, at times white hot, coming out of my fingers and onto whatever has the misfortune of being next to it...here are two pics of the best i can try and portray what they feel like
Monday, December 26, 2011
the past few days have been, well, less than perfect. 5 year mark of me being housebound...normal holiday family fights (cue christmas movie montage), me disappointing others unawares, you know the drill. tonight i kept noticing Chai bunny going into the closet and nesting...she came out and i got to catch one pic of her, half her mouth sticking out with her own fluff-and on the left-a long piece of hay. god bless that bunny! ; 0
Merry christmas/holidays/new years/etc. and may it be over really soon! oxoxoxoxo
Thursday, December 22, 2011
I think as a nation we are somewhat conditioned to having that saving twist-the something/someone comes in to save the day kind of ending-to beat the bad guy. Personally for me I blame sitcoms and Sweet Valley High books. 5 years ago today I was forced to resign due to medical reasons from teaching, sent packing, and was home moved in with my parents a day or so later. Needless to say it was a tough Christmas.
I really thought that after 6 months to a year-after resting and regaining the strength from my 3 year battle with a very complicated broken ankle that put my fibromyalgia in a tailspin that I would somehow get better and start a new plan. For at least 2-3 years mom and dad talked about getting me into an apartment when I got better-I think they just needed to hold on to hope that I would rebound. Within year 3-4 thankfully for my sake that subject of job/apartment/etc. stopped.
I consider myself so blessed-so lucky that my parents stepped in and swooped me up without batting an eye. I could be going through this and be homeless, or in a country where women aren't even allowed medical care, or in a remote part of the world where technology couldn't help me have a window out of my battered, cramped, crinkled cocoon. Along with that of course comes the crushing grief of what was lost 5 years ago. I don't feel sorry for myself-but I do allow myself to grieve. For the chronically ill grieving is an ongoing process. Everyday almost we stubble across something that reminds us of the old me, the old life, the old plan. Yet I strive daily to give myself the freedom to grieve along with the freedom to keep going. Not to a specific place or time, but just to hold on and try.
Wednesday, December 21, 2011
I love the look of a moleskin notebook, with the elastic little band that keeps your secrets safe and sound, and have a gorgeous grosgrain ribbon bookmark in each little book. I have a lot of writing apps on my iPad, but ran across this one by 'Fabulously Retro' and the people behind 'Pad and Quill'. They have loads of different covers-all different fonts and colors-and they stack up like a little bookshelf on the screen. I've already started 4 notebooks since yesterday, and at 99 cents, it was a great stocking stuffer I stuffed to myself. ; )
Monday, December 19, 2011
today, even through the pain, somehow i was able to be a bit of the old me. i laughed and smiled and even giggled. i try to remember these moments when the pain comes back and takes that away, but for now, i'll enjoy it
Saturday, December 17, 2011
tonight i fell. again. for the third time in a sitting position, crashing down to the floor-landed on a bottle and the imprints are starting to turn into bruises. it's so humbling to realize that your body and what the old body could do are no longer one.
i cried so hard as it just hurt in my hip, hands, head, etc. i scared poor Chai bunny to death and hours later she has finally calmed down-but still won't come over to where i fell. : (
Thursday, December 15, 2011
after my spinal shots at my neuro on tuesday, dad went out to drive the car around as we had parked at the end of the lot and i was not able to walk the length (which isn't long at all for most-but for me after shots-no way no how) back. i had been crying in the waiting room. the pain of the drive over and sitting in the chairs finally got to me-and after hearing Sarah Jarowz's cover of Radiohead's 'The Tourist', i lost it-i always find it interesting to see which song i lose it to if i do-last time it was Adele-Lovesong cover (the Cure). by the time i got back and was on the table waiting for him to come in, my left sciatic nerve and back where it stems from on the left side was so bad i wasn't crying-i was wailing like an animal. When Dr. T walked in he used the entire shot on just that area, instead of halfing it between two places. he then didn't even ask-just sent me straight in to get a pain shot. thank god above!
back to where i started-i was sitting on this ottoman/coffee table soft cushioned cube with a few christmas decorations that still were waiting to be put up-and i was hunched over in my pain. i noticed a gorgeous gold ornament had fallen off the tree in the back, by the corner window, and only from that hunched position could i see it-it was reflecting back the tree lights and was gorgeous. i picked up the cell camera and took a few shots, and for a small while was ok with the pain for the gorgeous ornament i identified with. apart from the tree and my real life, but able to reflect back something, somehow.
Tuesday, December 13, 2011
Dad always has to drive me to my doctor appts, & one month at my normal monthly neurologist appt, he said 'I know they're being polite, but I wonder why the nurses taking the patients back ask how they are-so many people here are so sick & miserable'. He had been witness to my silent, sobbing, iPod fogged meltdowns enough to know what a person's pain center in their brain can be so wrong in what it tells the body to interpret as pain. Tomorrow will be one of those days, my lying 'I'm fine', & the tears filling my lap as I bury my head & have music to save me with noise reducing headphones & gorgeous music.
Monday, December 12, 2011
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")
Sunday, December 11, 2011
Tonight I knew there would be a beautiful full moon, & I knew I only had it in me to go outside once-as there are lots of trees that block it, I used the fantastic Star Walk for iPad app to let me see it's location. I checked & checked...then saw it would be perfect to go out on the back porch with no trees blocking & see it. The screened in porch was so bright from he moonlight that I didn't need a light. It was gorgeous. I added some chalky powder to look like mountains. Thank you Star Walk!
Friday, December 9, 2011
many of you know that when my pain gets extreme, i grab the camera, and today is no exception. we have these wild tiny roses out back, and mom had brought some in months ago. they died and dried, and still in the tiny vase today, i grabbed them after the morphine didn't touch the pain and did some pics. here are the results
Thursday, December 8, 2011
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. ; (
Wednesday, December 7, 2011
tomorrow-rather today, in a few hours, i will shower. showering and all the normal things like brushing my teeth, etc. are really hard for me. showering, even sitting down while soaping up is exhausting. amazing how humiliating things get that you can always take for granted-or did before. then, i go in to see my fantastic primary care dr. she is awesome, sweet, funny, and honestly would do anything she could for me. for a few months now i have suspected (by default of anything else) that i have Lymphedema in my left left. basically, my left leg is swelling and has been a lot more-getting a good bit fatter/bigger than my normal right leg. i just have had so much going on i haven't been able to get in to see her, but a few days ago-while dad was having surgery, i got-in a matter of hours-a sore. it looks like two snake fangs bit me-and as i have read/seen pics of this condition, these sores/infections can get bad to the point of very serious infection/skin removal type ick. anyway, as i will feel glad to hear that i'm not crazy and that it probably is this chronic illness, that it is ANOTHER DAMN CHRONIC ILLNESS, with no real treatments, no cure, and can get much, much, much worse is really depressing. i hadn't shown the parents the sore on my ankle until dad had a few days as his surgery was really intense, but when they saw it we called and i'm on first thing, 8 AM. as this pic shows (with an awesome new kind of framing!) the top left has a handful of pills, which i'm not looking forward to adding to my already jammed pack schedules of meds. more after the dr. xoxoxo, m
Sunday, December 4, 2011
a few days after my brother and his family (and new baby) left after Thanksgiving, mom was kind of down, and out of the blue this hibiscus bloomed during freezing cold weather! mom swears it happened the last time Kaleb left a few years ago-I took some pics and made her a collage using the awesome Photo Table app.
Tonight at 8 PM I felt a deep zombie shaped hole in my heart! The mid-season finale was last Sunday night, and so until February, no walkers, zombies, or running survivors and drama. What will we do??? : ) (watch season one on Netflix streaming probably)...
Friday, December 2, 2011
one of my photos was used today in the facebook page for the national fibromyalgia and chronic pain association! they have a new holiday album up, and my picture was used as the first picture, and if i understand the facebook way, the cover by default! i was so proud, and although it was a sad picture, and represents all the pain of fibromyalgia, i knew there were people who would and have seen this face in their mirror, in a loved one's face, etc. i am beyond honored to have my pic used!
Tuesday, November 29, 2011
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.
Monday, November 28, 2011
i got an early christmas gift i found on Etsy...a cigar box purse! i love it and it is all recycled stuff. it's perfect because i can't stuff too much in it, therefore i won't hurt myself carrying something too heavy!