Day 2-Quote-Frida Kahlo

'I am not sick. I am broken. But I am happy to be alive as long as I can paint.' This quote by Frida Kahlo may not seem like the traditional inspirational quote, but for me the raw honesty mixed with hope is the best. When I hear the word sick it conveys the possibility of getting well, which not to be negative, but I see getting well as a 1% chance of happening. I am broken. I do a ton of things daily in the hope of it helping my symptoms or overall health & will continue to do so, but I know deep down that there will be a cure for cancer long before fibromyalgia. I love creating through paints, writing, drawing, etc. With my iPad I've gotten back into painting, & just the freedom of turning a watercolor blob into a flower thrills me. Taking pictures (even the saddest, bleakest ones) of myself living this life is as good as months of therapy. Kahlo's deeply personal paintings of her pain inspire me to no end. I'm so very broken, but having ways to be creative continue to help me cope, & are as close to healing as I'm going to get, & for that I'm profoundly grateful.

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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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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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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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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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My amethyst house

As purple is the awareness color for fibromyalgia-& a longtime fav of mine, dad so lovingly painted 2 walls gothic amethyst, a grey-silver light purple & the other two a dark eggplant color called purple blanket. I love the names of paint colors! He had a toilet & sink put in-I'll use their shower in their house for safety, & we angled my bed against the two white shelves we're using (that mom lovingly donated to the cause) as a privacy barrier in the corner by the bathroom. As I spend so much time sitting/reclining in bed, I wanted it a major part of the plan so I can see the tv, face the love seat for company, etc. I had gotten the black wooden sleigh bed back in graduate school-it has 4 spiral silver knobs on each corner that I adore. Mom & dad gave me the gorgeous batik bedspread (that perfectly fits my queen bed) they got in Indonesia. It's perfect! Chai bunny is loving the huge space compared to the only place she has known-the old bedroom. Though the apt is basically an efficiency it is huge to her! It has a garage door that we are covering with my massive vinyl collection on shelves & an old school pull-down school map. I love that I have built-in shelves by the bed for keeping my cords/iPad/kindle, etc right there in reach. This is my 2nd night & I'm just thrilled! Thanks for all of your great wishes! Also a huge thanks to mom & dad, & my brother for finding the guy to put in my bathroom-he chose a great guy.

notice Chai under the table...

my magic bed

media center & my Indonesian triangle shelf

Chai bunny in bed

Watching the last 'Closer' from bed :)

Record players & shelves

 

Headboard details & gorgeous eggplant paint!

 

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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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Simply Sunday

As I sit listening to my beloved rain that I love but my evil body hates, I focus on the little good things that have happened in the past few days. Chai bunny remembered how much she loved to get in bed with me for bunny massages, & has been up with me, getting her ears, little face, head & jaw rubbed no less than 15 times at least the past few days. She has a place on her tummy which entails a vet visit tomorrow or Tuesday, but today I'm concentrating on her fuzzy face.

I finished my 4th book this year! It was almost 700 pages & involved me checking it out from our ebook library 4 times, but totally worth it-the first book in the Girl with the Dragon Tattoo series. I just got book 2 from the library. Chai bunny & I shared a strawberry today...her first & she loved it! I got several free ebooks & a few on sale that I can't wait to read-& Amazon held their word-I got my replacement Kindle last week & it is working great! Great tv tonight which is always a good focus off pain point, as well as my books. There are times in my new life when thinking about the good, even if tiny actually does take my focus off pain for a small little while, & that's a massive help.

Housebound holidays

So often being a sick housebound person feels really tough when everyone is at the beach, at a cookout, or at a holiday party. Granted the holiday is about the men & women who serve with honor & bravery to keep us safe-& yet we all take advantage of the awesome sales & South Park marathons. Obviously we can balance both-but being stuck at home feels like any other day. I decided to treat myself a bit, & got 7 Nordic crime ebooks discounted hugely today. I let myself relax more & enjoy marathons, & try not to feel guilty that I'm not able to work or do the things most normal people do. I also really let the thought sink in that I could be a sick person stuck in another country where I have no rights-access to medical care or help. The thought of living my life without the huge advantages I have could be a much worse life.

 

Bizarro day

My 'days' are strange-normally I sleep a lot during the day as my pain gets worse at night...& there's better tv on. ;) I was downstairs with my parents cat Macy-she's been really sick & so while they are gone I slept downstairs. It was great as I could prop my iPad up on the side table & was able to recline sideways so much easier than upstairs.

I started getting so tired & ended up sleeping half the night. Macy woke me up & around 5AM I went & checked the mail, which ridiculously enough exhausts me. After just a bit I fell back asleep. Today was the day my morphine was due, & with dad gone, he had our lovely friend Brenda pick the Rx up & bring to me-she is a huge reason in the cons part of moving. Even though I don't see her much we email & text & keep in touch through the parents. I knew she would be bringing the meds inside & I was trying to stay awake to see & thank her. Of course I was dead asleep, having the worst stress dreams. This is my painting of it-using a great new 50 cent stylus pen. I love Amazon!

So a few hours later Macy wakes me again as she too was dreaming-& she wakes herself up crying in the saddest way ever. She sounds like a haunted duck trying to bring her head up from under water. Maybe we were having the same dream? Completely out of it I see a text from Brenda, & I go to the kitchen & see my meds with the greatest thing ever! Donuts...Homer Simpson would be proud. One was a cream filled chocolate dipped one with bright blue icing dots, the next a four round tiny ones combined in a clover-like design that were raspberry filled. So good. & the best & last-a heart shaped donut with a blue icing smiley face! She told me later she thought that having sugar to make the medicine go down inspired her. She is by far the best 'babysitter' ever! Just without question. I'm now full of sugar & morphine, have almost forgotten about the awful stress dreams & painting. I try so hard to see & enjoy to the fullest the good surprises that pop up along my way. Thanks Brenda. :)

 

Last day-#HAWMC/WEGO wrap up

We are to discuss the things we loved, prompts we hated, fellow bloggers, what we learned, etc. like this pic of berries I ate earlier, I feel this really sums us up. Sweet & funny, bittersweet & raw, with sugar the medicine goes down easier, etc. I hate that I started late, & that on a few days I was too sick to blog, although I will be making them up, which thrills me. I loved the pick a page-pick a sentence & write about it...probably my favorite prompt. We got to be direwolves, & that was fantastic! I even really liked the haiku prompt & it fit perfectly with the day I had experienced. My favorite blogger by FAR is Nuria & her brand new blog Lupie Cave. I had met her on twitter & she got brave, started blogging, & her 2nd or 3rd blog she was one of the top 3 of 3! She is an amazing writer & has blogs in her native Spanish & one in English! She is a huge inspiration to me already. After years of hiding she has come out in a big, bold, brave way & I love her honest courage. I will keep around a few prompts, the book & haiku I mentioned, the word cloud, etc. I'm excited to keep going on my make-up missed days. Thanks WEGO for pushing me & helping me grow. You helped shake me up out of my rut!

 

Day 26-5 things-#HAWMC/WEGO health

Day 27

 

5 Challenges. 5 Small Victories. Make a list of the 5 most difficult parts of your health focus. Make another top 5 list for the little, good things (small victories) that keep you going

 

Difficult parts:

1-humility that comes with things like personal hygiene taking a backseat at times

2-pain that nothing can quiet

3-feeling invisible

4-guilt that I've ruined my parents lives & plans

5-not seeing a future I can handle or a future I might could have had if I hadn't gotten sick

 

Small victories:

1-getting my pics & story published in a magazine

2-feedback from people who identify with me-or one friend who said she wanted to be a good friend to her newly diagnosed friend & reads my blog for advice

3-the sense that I'm fighting with every pic, blog entry, etc.

4-seeing who my real friends are...strangers, old friends reconnecting, etc

5-taking my loss of photography that I loved overseas & repackaging my subject as I turned the camera into myself, soul, & opened up the raw nature of my life. I found immense freedom in that!

 

 

Day 25-memory from another view-#HAWMC/WEGO health

The girl sits on the bed-naked-as any clothing that touches her skin feels like an attack of needles. She has an ice pack propped up on a pillow placed carefully so it covers two inflamed areas on her lower back of the spinal shots from earlier that day. Her left sciatic nerve starting in her back & radiating down the back of her leg & the top & bottom of her foot feels as though an electric prod combined with a vice is irritating the nerve constantly. It never lets up. Her left hip is so tender to the touch she hasn't slept on it-hasn't even leaned over on it-for the past 7 years. She tries to watch tv to take her focus off of the pain yet can't focus. She switches to Netflix on her iPad, trying in vain to find anything that can help focus her damaged brain's pain center elsewhere. After starting & stopping at least 3 different movies she finally settles on one. Tears start falling onto the screen. Beside her the bed softly indents as her house rabbit, Chai, as carefully as she can jumps up on the bed. Chai starts licking the sheets which in bunny means 'deep affection'. She puts her front paws up on the girl's left shoulder & touches noses with her. She barely licks her arm, but as it feels like acid she stops & hops around in front & licks the bedspread, pillows, & any clothing on the bed. As she examines the girl one last time she gives final licks & slowly jumps off the bed, flops down next to one of her stuffed rabbit friends as the girl smiles.

 

Day 24- Mascot a go-go #HAWMC-WEGO

Our topic for today is to have a mascot for our illnesses or health focus. I'm choosing my own name...the reverted butterfly. Within a year or so into my becoming housebound & getting involved online, I discovered that many of the groups out there have butterflies as their logos or animal so to speak. I liked the thought, but as I had spent the last decade of my life living & teaching overseas, I felt the opposite. I was lucky enough to have lived in Indonesia, the Czech Republic, & had traveled in Australia, Asia, Brazil, etc. I felt like I had reverted back to the cocoon stage but was fully grown, so when I started my picture a day blog, I chose to refer to myself as a reverted butterfly. The important part I felt was to be honest-to paint a true picture, but also to be positive. I am trying to fight my way out of this new cocoon. Even if I never fully get out I'll never stop fighting, & to me that is my main message. I painted a picture of a purple butterfly, as fibro's color is purple, fighting to escape the cocoon stuck on a tree branch. You can see I have windows into my world from the cocoon, & damaged wings are sticking out, trying to stay a part of the world from this strange new wrapping of life.

 

 

Day 16 writing style #HAWMC #WEGO

For me, something, a picture or event just goes from brain to blogsy. I'll be watching a movie & have to stop & write my blog...example: after 'fight' tonight with family about moving

Today I realized that from now until we move there will never be a day when I'm not asked to go through boxes, asked about items-should I, can I, may I keep things? Things I love. Things that bring back memories. Happy memories, sad memories, bittersweet memories. Each item has a story, & each story carries grief, laughter, love, & letting go. Mom & dad see my reaction to this as anger-when it's the opposite. Each item I see Zoe, from the first day I got her until the day the vet put her to sleep. I see my overseas life-when I did something that mattered. I helped people...there was a need for me in this world, & there really isn't that need now. I see old friends-some I hold so close to my heart even though I've lost them in one way or another. I see Kris-my late brother. I see my old future potential. I see my test results that admitted me into graduate school. I see gifts from my university students. As much as I hate to say it pain overwhelms any feeling of joy at looking at these precious items. Mom & dad think my resistance to change boils down to drs & morphine, when it's grief over losing professionals who see me as a person who is legitimately hurting & in pain. Mom feels she is the whipping post, dad feels like the joy he used to feel can never be found again, & I feel like an anchor weighing them down from sailing into their sunset years together.

 

 

'my dream day' WEGO #HAWMC day 14

Wow. Easy but really hard. I was so lucky & worked so hard tutoring in my off hours to work, live, & travel all over the world. I love having these memories, but I assure you sometimes they are more painful now that I'm alone & housebound. I am making my day re-visiting 3 amazing places, with J, my closest friend.

First we wake up in the coolest B&B in Tirendentes, Brazil-a tiny mountain mining town. We spent 2-3 days there about 8 years ago, & it is easily one of my alltime favorite places on earth. We will walk around, & I will be able to walk more than 3 minutes-I'll be able to keep up with him, & we will see parts of the town we missed before. Here is a link to a pic that looks identical to one of mine, somewhere in boxes in the garage.

http://www.flickr.com/photos/ricardobevilaqua/2271628610/in/photostream/

We will then magic carpet over to the Great Ocean Road in Australia, & visit the glow worm forest where you feel as if you are floating with the stars around you.

 

Then, around midnight we will jump over a few hours north of Brisbane, Australia, & go to the Mon Repos sea turtle sanctuary, where mother turtles come & lay their eggs, & then other clutches of nests erupt-the baby turtles tunneling up through the sand, down the beach, & out to sea. I got to see both one might under a full moon, & it honestly changed my life. Here's an amazing video I found...

http://vimeo.com/14136833

 

Day 13 (ahhh Friday!) 10 things I can't live without WEGO #HAWMC

Ok, other than my parents who took me in after I got disabled & housebound, etc, here are some things that keep me GOING. Whether it is acts or material things, here is a how to ten for me...

1. My house rabbit, Chai. She is my little nurse. Jumps on my bed to check on me, jumps up & frolics often, & fills me with joy when I have none.

 

2. My iPod. When waiting at various doctor waiting rooms, blocking out everything & letting dad be my ears is crucial. Sitting in uncomfortable chairs & smelling the various scents of people & their vices-smoke, too much perfume...my brain's pain center goes into overdrive. Closing my eyes & turning up my music with my body folded into myself gets me through.

 

3. My iPad (no, I'm not an Apple spokesperson!) keeps me connected to the outside world. My Flickr pic project, blogging, Facebook, twitter, not to mention losing myself & trying to focus on games, Netflix, entertainment, etc. I count my blessed stars daily for this magic machine that isn't too heavy for my weak body to carry!

 

4. My cheap not smart cell phone camera. To not document this illness would mean the end of me.

 

5. My new baby Kindle. After not being able to hold books open & read, ebooks got me back to reading. I used to read 3-6 books a week, then one for 5 years. Since getting my kindle in mid-February I've read 3 books already!

6. Art. I do all of it through painting apps on my iPad as I can't stand the paint fumes or hold brushes, etc, I can paint again with oils, watercolors, etc. :)

 

7. As a vegetarian, I eat Amy's organic veggie/vegan meals once a day. Also Lean Cuisine veggie meals, & the veggie Kashi meals. They save me-I microwave them & as I can't stand for more than 3-5 mins I can sit & wait. I so miss cooking properly, but I count my blessings that these products are available. (no pic but Chai bunny's a veggie eater too!)

 

8. Little surprises...at times like this one, when looking down, crying, the blown glass light fixture reflected in my iPod at my neuro office, are always a little extra I live for...

 

9. Pills, from pain meds to magnesium to ice packs & heating pads. A necessary evil.

10. My doctors. They understand me-they know me-they honestly care. I don't know what I will do without them when we move. How will I ever find them again? My sadness at the thought.

 

 

Chai bunny saves my night

I'm home alone for a few days, & after getting a call that left me in tears, I went to get my beloved bunny. I have been staying downstairs as Macy, the parents' cat, gets very upset & cries nonstop when they're gone. So Chai bunny making her excited going downstairs breathing noises was so cute-so nervous as she hasn't been back on my parents bed in forever. She was so shy at first, all huddled into me, cooing & softly making the sweetest, most tender crying-like noises as we cuddled. She got brave of course & hopped around the bed...in my room she's up & down on the bed constantly, but she was in newish territory. I got a few hilarious pics, one which got retweeted as cutest pic of the day on twitter (us watching Alcatraz together) & an under the chin shot where she looks like a shark-dolphin. She cheered me up, & I can't wait to bring her down later today. As anyone with a chronic illness knows, having the all consuming love of a pet is indeed the best medicine.