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?

 

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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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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?

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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.

 

 

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To be a real girl

Day 3 of the National Health Blog Post Month (NHBPM) is the topic 'I don't know about this, but I'd like to', & today for me that is without a doubt How to be/act/respond like a real, normal, functioning person. A little while back, mom & dad had over a family friend, & of course I told them I would come over the 20 steps through the back yard & spend some time with them. After the fact I came back to my little house wanting to crawl under my pile of clean clothes & never come out. I was deeply embarrassed, & it stung badly. The friend in no way probably meant this at all of course. Here's the humiliating details with names & dates changed for those involved. Well, all but me. O. o 

After staying up all night per my usual painsomnia, I had just gotten to sleep when my alarm went off. I got up, took my morphine which would mean a gap in my normal routine later but that's the cost of doing business in my world. Walking through the back door I saw the friend's face change. Eyebrows raised, shock registering before they could help themselves, & as I went to hug them it was if their body forgot how to hug. Acting as if I hadn't just hugged a marble statue i tried to smile & sat down. The poor friend then blurted out a comment/observation about my appearance, & let me just say it came out the exact opposite of the intended tone. Answering the question, it hit them how it sounded, & as dad started to laugh (as he & I had discussed this just a day or two before) & I was really glad to have an excuse to change the subject. It was truly about as low on the humility scale as i'd ever experienced, & i could feel tears coming, but I managed to hang on to my last bit of dignity & not cry. I also didn't want to make them feel uncomfortable-so i just sat down at the me-painful table. Physically sitting in normal chairs kills me, but I didn't want to make the situation more awkward, so I said nothing & sat as we had a small bite to eat. Getting more & more uncomfortable, I squirmed around like a child. The friend had been going through some tough times, & I had seen something that reminded me of their family & I had made a note to tell them-as I tried to get the words out the lack of sleep, pain becoming more painful, & fibro-fog clouding my brain left a fragment of a sentence hanging out of my mouth. I couldn't make any ordered words continue as they stared at me-totally lost I just stopped talking & thankfully mom's plentiful storytelling continued as I stuck food in my mouth to replace my garbled words. Ugh. A few more just odd/half insult sounding things were said, again-they didn't mean them but regardless-my body couldn't take anymore & my heart was already sagging under my dejected weight, so I released everyone & left, smiling as I said my fake high spirited goodbyes. Sinking into bed Chai bunny got up with me & positioned herself under my hand, waiting to be loved.

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Day 1-why I write/social media

Welcome to day one of the National Health Blog Post Month! NHBPM from WEGO Health will have bloggers posting 30 for 30-a blog a day for November, using prompts to guide them. Today the choices are: why I write about my health, or what I like about social media/the Internet/online health communities. I actually am going to combine these today-as my yesterday/Halloween is a perfect fit.

My pain tends to be worse at night, so my day usually is late afternoon through early morning. I sleep when most people are working & am up all night. I started blogging-usually after midnight...after seeing how a soldier with PTSD was told that blogging & talking about his life could help. The show was the PBS show Sherlock, the soldier Dr. Watson. It seemed to help him & so I started doing a picture a day/blog. I use photography as a coping mechanism, & so doing a picture a day blog seemed like a good fit. Example? Tuesday night. Mom & dad had gone to see my 2 nephews & babysat while my brother & his wife were out. It really depressed me that I was stuck at home, not going to a great costume party, or seeing my adorable nephews, & not out buying candy & decorating my front door for kids. It was a normal night inside, as usual. Mom brought home 2 cute sugar cookies, & determined to not be sad I started taking pictures & created a happy Halloween picture card to send to my family. After finishing that, I started painting using the ArtRage app on my iPad. Being able to pull up all sorts of various paints/drawing pencils/art supply apps (without the mess or expense) has become a lifesaver to so many disabled people, whether they are physically or emotional handicapped. After sketching out the flower I started painting it using watercolors-this specific app has a feature where you can bring up a photograph to refer to & actually pull colors from it to paint with. It is as close to painting as you can get, & there's no way a certain fuzzy bunny can jump up in bed & mess up wet paint.

Around 2 AM I needed a break so I turned to AMC's Fearfest Halloween marathon & as you can see the screams of the actors had her ears raised most of the night. I watch a lot of tv & Netflix streaming movies, & it so helps me refocus my mind off of the pain. During a commercial I went & took a picture of the gorgeous full moon. The yard was bright with reflected light, & I just stood in the chilly air for a bit in the silenced glow. After hours of terror, I fell asleep around 7 AM. Dad woke me up letting me know my brother & family were coming by, & after walking the 20 steps or so to the back porch, dad & I watched the first of the hilarious Zombieland as mom got the house baby friendly. My sister-in-law & my 1 & 1/2 year old nephew were dressed as Lucy & Charlie Brown, & my brother was Obi Kenobi & my nephew was a perfect blonde Luke Skywalker. It was if they worked out how to get 2 of my favorite things from childhood together meeting! I was so sore after so came back as they left & watched more Fearfest, read some more of my kindle ghost story, took another moon shot & inverted it, & as a treat lit a ton of candles.

I got depressed again & so I reached out to my online community. I cannot stress how much having someone who can relate exactly to what you feel physically & emotionally helps. I know at any time of the day/night I can find a friend, online, who I can talk to-it is such a great feeling. Having that accessible network is crucial to coping & survival. Without being able to gt out my emotions & talk I would be an absolute basket case. I'm so lucky to have hat-I can't imagine being housebound without the technology of today. I consider myself so lucky that I am sick in a time where I am never alone-there is always someone I can reach out to-as awful as life can be I am blessed with that knowledge.

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Finality in Lights

I love having my new, own place. Chai bunny has loved exploring & ripping pieces off the maze of cardboard boxes, climbing up my 7 pillow stacks, searching for the previously hidden tootsie roll bag with her massive hound dog nose, & taking her stuffed friends all over to show them their new home. We put up a string of lights as a banner on my bed, adding some whimsy & light to my otherwise kept vampire-like dark I keep for my insane fibro-sensitive eyes. Otherwise I've felt I have had nothing to say, nothing to feel, just nothing. My doctor is good, although his wanting to skip a month in visits & not really planning anything new in the way of treatments is a bit worrying. I guess I feel that like an elderly person going into a home I've gotten to the place in a figurative sense I've come to die. That's ok, but just so final. One of the main reasons we moved is to be closer to family, for my parents know after they are gone I'll need help just existing...though I worry & feel badly for whoever gets saddled with the burden of me as a professional sick person. I hate feeling or thinking like this, but it comes to me when I'm sleeping through stress dreams & is on my mind when I wake up. Hopefully Chai bunny will continue to jump on my bed & wake me up with her fuzzy face & big eyes watching me as I open my eyes.

 

 

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Making the bed

I've been really sick lately. My body seems to have forgotten what proper seasons feel like, & for over a week my sinus/allergies/cold has switched into high gear. Crazy how my body forgets how to fight & adjust to something I lived with over half of my life...after living 5+ years without seasons, my compromised body doesn't know what on earth to do. All I know is that if I don't see real snow after the packing, moving, stress, etc I will flip out. Dad found a bottom/fitted sheet & brought it over. He is really busy today, so I made myself switch around the mattress pad, put on a bottom sheet, & rearrange the batik bedspread so he didn't have to come back over. I have been so happy to just have a bed, tv, fridge, & Chai bunny I've lived without a sheet for a couple of months. Your priorities change when you focus on just getting through each day & night as best you can. Chai bunny loves the new & improved bed, jumping up & thumping so hard she bounced to announce to the bed that she had arrived. Of course my body is cursing me for not waiting for bed-making help, but as the parents are sick with cold front colds too, I just wanted to do something for myself. Mom sent me these roses from one of our many flower bushes last week, & today as they are dying I fell in love with the poppy-like look of the huge middles & had to take a picture. An almost dried Cabbage Rose, watching My Name Is Earl on Netflix, & Chai bunny visits set my mind at ease a bit as I try to breathe deep & fight through one more day. & fresh sheets are just the icing on my happy little cake ;)

 

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Finding home

Today was one of the most painful, exhausting days yet was the day I felt most at home. I often have CFS (chronic fatigue syndrome) symptoms-extreme exhaustion-just walking 5 steps to the bathroom can leave me worn out. I slept on & off all night & day, & finally figured out that putting pillows under my arms helped the pain a little bit. Having extreme joint/elbow pain from rheumatoid arthritis, fibro, & oesteoporosis causes painsomnia. Even with the pain, tiredness, & fever-like feeling, I felt really at home today. For me, home has always been mental & not based on location-living in the Czech Republic I felt like I was home...& in the mountains of Brazil it seemed I belonged there. Deep down of course I knew that moving here would work out-I never have minded change, for that signified excitement & new experiences...but that was when I was moving around overseas, etc. Today even with boxes still packed & no pictures on the wall it didn't matter. Sleeping in my old bed, with 8 pillows arranged in order of relief, & a fridge full of Marnie safe food, & Chai bunny resting underneath my foot as if it was a bunny nestling above her head, mentally I felt ok with the world. Mom had sent over a jar of flowers-ones that had broken off an arrangement dad was taking to put on my brother's grave Sunday-& with wet hair from sticking my head out the door watching our turtle-who we named Pepper-walk around in the pouring rain, I took this picture to capture my happiness. To document the proof that I was ok. That even with tremendous pain I felt at peace. That my little purple house had become my home.

 

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Beautifully Broken

We have loads of flowers in our yard-red, yellow (my late grandmother's favorites), & pink roses, as well as white cabbage roses. Huge bushes of gardenias which smell amazing when the wind blows just the right way, & these purple flowers on an almost tree size bush. Mom discovered that when they wither up they become heavy & break off, & the ground below is littered with the fallen flowers. They are very pretty, but the ones that fall off become a darker shade & are a much more beautiful, very different looking flower. The live ones remind me of the normals-people who don't have the chronic invisible illnesses. They give to the world. They add something. The wind picks them up & their scents fill the air. Many people I've talked to feel guilt over not being members of society who work, do good for their communities & add positive aspects to the world. Every Monday especially I feel such guilt that I'm home in bed when most people are out contributing to society. Having been a teacher I really feel as though I let my former students down. I'm the burdened withered up broken flower who now litters the grass. Though I much prefer the darker, richer shade of purple I've turned into, trying to get through the guilt is so heavy that my petals pull inward inside the center, become very heavy, & prematurely fall to the ground. I know my guilt is unfounded, yet it's still there, on the back burner of my conscience.

The flowers open full-we aren't sure what kind these are.

Dried up fallen ones that mom brought over last night.

The gorgeous colors of the dying, withered blooms.

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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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Visible Hope

My mom/caregiver is fantastic about fixing little surprises for me, like these flowers in the backyard we share, & dad/caregiver for walking them over to my little purple house! Having these things made & brought with love gives me double the hope during my often dark days. Thanks guys!

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Invisible Illness Week starts tomorrow!

Invisible illness week starts tomorrow (Monday, September 10, 2012) & so I will be blogging for that cause in a few hours! Join me!

 

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Happy Anniversary Lessons

It's my parents 49th anniversary. After the things they've been through & survived-it gives me hope that that I can make it. After the great neuro visit other than the decision to not do spinal shots for a bit mentally I'm feeling more sound. That things might just work out. He did a nerve test that had me using a walker for days after & completely bedridden. Not fun but necessary. He felt I had MS but we reassured him that my spinal tap, etc came back ok. It's scary that my drs see this possibility after having me squeeze their hand & I can feel my strength just not where it once was...& I can sense it in their mannerisms. Alas, I loved the new doctor-he kept me at my pain med regiment, which from his nurse I understand I'm only the 2nd person he has written high power meds for-she said he felt I was sweet & trustworthy & was knowledgeable about my conditions-& that I wasn't out to take advantage. It thrilled me that he saw that in me. My little purple house is coming along slowly & Chai bunny has made it her own. She loves getting in bed with me, searching for treats I keep hidden under a pillow. I love having privacy but also having mom & dad only a few feet away is comforting. Sorry if this seems disjointed-it is. I am. I've been so exhausted I can't seem to do much of anything after seeing the dr a few days ago. That's ok-if anything my parents have shown me not to give up-through extreme economic hard times. The 2 year illness & death of a child to cancer. Through numerous moves-so numerous I can't count. To the usual family strife & reconnecting. To real life. Happy anniversary mom & dad, & thank you for showing me lessons in surviving in real life & time. I love you both so much.

 

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Moving to apt!

An hour-ish Chai bunny & I are moving into our apt/house in the backyard of the parents house! We've been dying to get out there but we had to get fixed in the main house first...so pics to come! Here's the paint colors & my one of a kind Indonesian Batik bedspread from our time living over there...& finally I'll be back in my own black sleigh bed after 6 long years. Much to celebrate tonight!

 

Chai bunny adopted my childhood friend Marshmallow from my dear friend Laura!

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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.

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Moving

We have now been in our new home for 15 days-my little apt out back has a ways to go, so I have been living in the house until things settle down. Chai bunny seems to be better after coming very close to death several times-right now that subject is too painful to think about. Leaving my beloved cat Zoe & dear rabbit Amsterdam buried in the backyard of the old house was too much to bear. After physically moving things that last morning for fear of my parents having heart attacks/strokes, my body is still in a major flare. We had to get my last prescription of pain meds in Alabama before we left-& ended up having to go to 2 pharmacies to find them as our usual drugstore was out. The 3 of us & my bunny & their cat rode smushed up in the front seat while we towed our car behind. I would have driven as in past times but with meds & physical condition that wasn't an option. Halfway through the trip-after food orders got mixed up & other typical problems happened-the uhaul broke down. An amazing lady dressed in her nice work clothes stopped & helped us for at least an hour while we waited on help. We ended up spending the night-sneaking pets into the hotel as it was the only hotel around & too hot to leave them in the truck...& that next morning is when Chai bunny became a rag doll, totally opposite her normal feisty demeanor. We finally got here after tears, sweat, prayers, fears, you name it Monday the 16th. I've kept a round the clock Chai bunny watching vigil, while my brother dearly had people here that next morning to unload & take the truck back. We didn't have cable, phones, Internet, etc for over ten days, but we were safe...not sound, but safe. Mom found a dr that just might work for me-neurologist who seems a lot like my old dear Dr. T, but I can't see him for about a month, so we will have to find out if & where I could get meds as I'll be without them for a week or so, & going off meds like that cold turkey is extremely dangerous. The weather here is so much hotter, & mom constantly worries about dad & heat stroke as he can't sit still & wants to get things liveable. Our refrigerator broke last week...we have had loads of these things happen & I worry mom will have a major breakdown as all our nerves are raw & bleeding. Sorry to paint such a bleak picture, but if you know me you know that I have to be honest. This is my therapy-coping-my way to vent. I wanted to catch everyone up & thank you so much for the many messages I've gotten letting me know I'm not alone. More very soon-xxxooo from us

Taken the morning of he move-sitting on the floor trying to get magical strength

Posted with Blogsy

My independence days

When you become a professional sick person, you give up loads of things you wouldn't have ever thought an issue. Holding open a book. Needing fresh sheets but not wanting to bother your caregivers. Not being able to cook. Not being able to pick up your nephew.

I recently watched the movie Drive through Netflix streaming. It woke something up inside that I have missed so much. From the moment I could drive the car & endless roads out by our local lake became my refuge. I'd go & sit in my special scenic spots with my now forbidden diet cokes & listen to music, write, take pics, etc. Driving was freedom. I spent hours upon hours driving & finding meanings to life ;)

Watching that movie that excitement of the journey hit me hard. The title song Nightcall would be a perfect example of a song I'd listen to nonstop if I could. The dark, French electro-pop with shadows would last me miles around the beautiful huge lake I spent so much time around. I miss that independence-that lake-that magical marriage of the perfect music & the perfect drive.

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Sailing away

This is the last thing on my wall. Chai bunny had ripped a piece of paper up, & as it curled up she fell asleep on it-& later I found it & it looked like a tiny sailboat. I woke today realizing in 2 days I get spinal shots & see my beloved doctor one last time. In 4 days we'll be driving to the new home. Seeing this boat sailing off to it's final resting place I see 2 people on the boat-my parents, but I'm nowhere to be found.

 

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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.