Grieving the soon to be lost

Think about someone or something you use & love & depend on. For some a trusted hairdresser. I know people who have had longer relationships with the people who cut their hair than marriages. For some a beloved store-records, organic food, bookstore, etc. Maybe a great boss-a co-worker who goes above & beyond-an assistant. Your favorite waitress or coffee shop server-they give you a little extra topping or French fries. A company you work closely with maybe-you feel your business couldn't last without them. Now imagine losing them. They move, retire, get a new job...for whatever reason they're gone-or you are. For me, preparing to lose my doctors here feels like a death. Yes I know I might get better doctors, help, etc. I don't care. For 5 years my health & life have been in the hands of people who really cared on a deeper level than just a dr. They went the extra mile-trusted my opinions-listened to my ideas & loved that I really knew & listened to my own body & respected that. As I'm to call a pain center in Little Rock & try to see if they will take my bizarre puzzled case on tomorrow, I grieve. I can't imagine starting over. Again. From scratch. The 5 year 5 inch medical file relationship is almost over. It's like saying 'there's other fish in the sea'...yes maybe, but wow, that magically doesn't stop the pain. For me this is like a marriage ending. A part of me dying. Getting back on the dreaded merry-go-round doctor hunt. Is it worth it? Right now, deep in my heart all I feel is a resounding no.

 

A day in pics

Sometimes I just don't have much to say-anything of value to offer. One great piece of news: after fighting with/explaining/jumping through the hoops over & over, my student loans & the company that has them after a 3 year battle finally accepted my disability federal judge claim & forgave the debt. I hate not paying back what I owe, but there's no way since I can't work. We're thrilled but I feel guilty at the same time. Today 3 years ago my first house rabbit, Amsterdam, died, & Chai bunny came bounding into my life a few months later. Here she is playing in the spare room...& not chewing the cord. ; )

 

 

TMI Tuesdays-WEGO Health-behind the curtain

Many of you know the basics of fibromyalgia. The pain, merry-go-round doctors, trial & error medications, etc. all of that is a huge part, but even for all my openness & knowledge is power, there are a few things that only my parents know. There are things so humbling & humiliating that I keep most of them to myself. One of those things is the lack of personal hygiene. Often times taking a shower, even with the little plastic stool I use as a safety precaution & the fact that I can't stand for more than about 3 minutes at a time-even sitting down showering is exhausting. Many days can & do go by when I can't shower or bathe, & it's a crushing weight to one's self-esteem. To not be able to jump in the shower is a luxury I used to take granted-or a soothing bath. Things like this that go unsaid make me want to curl up & hide.

 

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.

 

Hands keep the fear away

I've always loved horror films, books, etc. A great thriller or race for scary survival & I'm there...but from a young age through my teen years, I would watch with my hands over my face, peeking out between my fingers, knowing if I got too scared I could close that gap & be protected. I still love horror-not just slashers but ghost stories or Jaws or the enemy might be a microbe or robot. I love the bravery. The fight. The willingness of some to sacrifice for others.

 

Now, having had severe stress dreams for the past 5 years, funnily enough they aren't your typical horror, but scare me so much more. I'm abandoned. I lose my pets or can't find food for them as they die in front of me. I'm back trying to work while the boss is ganging up on me because I can't pull my weight. I wake up exhausted, & honestly I hate to go to sleep. When you dream such vivid things you make yourself stay awake sometimes, terrified to go back to bed. This stems from lack of control-the stress felt when you can't choose anything anymore. I so often wish I could just sleep with my fingers across my brain, & keep the terror from entering my soul.

 

Feel good Friday-retraining the cogs

I've talked often about this upcoming move. Every fiber of my being says disaster yet I have no choice. Losing my doctors at this critical juncture is too much for me to stand. Yesterday, as my parents were packing, they found & brought down a gorgeous batik bedspread from our time in Indonesia. As the house they bought has a small workshop in the backyard-that will become my home. There's no bathroom or closets, but I've been trying to refocus on the fun I can have semi-on my own again. As I was offered that bedspread, I realized it's not necessarily what I would chose but rather after a few hours of it spread out on the bed in front of me, it started choosing me. Showing me a glimmer of hope of a few things. Nothing will be fixed physically, I am not to be a miracle healed, but I can spread out all my boxed up vinyl records, & life, & at least listen to my records at full blast as the pain washes over me.

 

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.

 

Missing House

Yesterday I went to the neuro. After running the tests 3 times & my proteins being slightly elevated I have for now (again) been ruled out MS-wise. Of course we were thrilled, & after the dr gave me 2 shots in the sciatic nerve & pinched nerve. I was really hurting-I hadn't realized that for me/a fibro person, the spinal tap took a lot more out of me than I thought. Our cable went out, & sadly I missed the series finale of House. Look, I know his character was an ass, yet I grew to love him. Better or worse parts of how he acts reflects me sometimes. I guess having the world see how chronic pain can change you helps me cope somehow. I love & will miss how he, as well as my real doctors see me as a pattern & puzzle for good-not something to chuck out & refer endlessly to other drs to get me out of their offices. Being dismissed because you are too complicated is a special kind of rejection hell. This pic & poem (instant poetry gives you 35+ words & you make something with it) was taken tonight, after I slept about 19 hours. Enjoy & excuse the crazy. :)

 

Living underwater

The medications I take make my legs feel like jelly. The sense of impending doom makes me feel like I'm submerged under water, but yet I can't drown. There's no assuring oxygen deprived thoughts of 'it will all be over soon' yet the panic & fear grow stronger. That has been me, since the day I found out we were leaving, & now, the day I tell my beloved doctor, the panic rises into my throat. I can't breathe or think but no hand reaches into the water to pull me up.

 

For a fool

After basically floating through ages 8-26 due to death of my brother, anorexia, endometriosis, etc just to mention a few things, I finally woke up for lack of a better phrase at age 27. I was like an 8 year old emotionally in a 27 year old body. That served me well in that everything-each sensation seemed so amazing. I was such a child but honestly so. On the downside I was & still can be so trusting. Things like dating, etc takes on an entirely new meaning when you should know better but you honestly don't because you missed the part where getting equipped was taught. Now that doesn't matter as dating isn't even a blip on some far off telescope. My last date, kiss, etc was like 8 years ago, & I don't see that changing. That's ok, as just getting through a day is enough mental head games on its own. However, when the knowledge base of what friends are comes into play, as a emotionally stunted teenager in a 41 year old form, I expect different things. I'm more cynical now that I'm 13, but still really get my feelings hurt like a 7 year old would. My mental formation grew up much too fast & yet was stunted so much. Add to the mix the chronic pain nightmare & you really do learn who your friends are. As soon as I got diagnosed with fibro, my grad school really good friend, girl G, well, she thought I was trying to get out of work. Needless to say that broke my heart & I hear she's married & maybe has a kid. Crazy as I was with her the night she met her husband. As my mom says 'consider the source' & I do but wow it is very gut inducing painwise. People like me (sickies) go through things like this, but I think most of us have that one person who really break our hearts. Like a detective who has that one case that still keeps them up at night, & even though they know they will never get their answers, they hold out hope. Listening last night to the just delightful band The Shins, I heard off their new album a song For A Fool. For me it took me to the heart of that friend who you know is gone-but still you hope yet know you were a fool, albeit innocently, for believing their words. Their rescue plan. Their liquid courage laced lies. I'm been wracking my emotions for 6 years about this friend, & hearing that song I want to say that no longer will I listen or hold out any hope that they will someday get real & deliver the friendship expected or deserved. I really hope this time it sticks.

 

Get out.

Physically & emotionally the past day or two have been awful. Scale of 1-10, a 17. When I went upstairs yesterday to check on Chai bunny & try to examine her & see if she is still sick (long story, but she's possibly sick & I'm still freaking) I took this shot of her. She was mad, sick of me trying to examine her, & mad that I've been spending all my time downstairs while the parents are gone, & I'm taking care of Macy cat,who is also sick. We should just open a damn clinic here. This picture is so cute & funny, & after I took it Chai took off to the corner & thumped loudly to show her frustration. I don't blame her. Sitting here crying I see myself looking into the tunnel watching fibromyalgia among other things take over my life, no matter how hard I fight to keep going. God I just want to give up yet also just beat the shit out of it-& I can't really do either. It's so frustrating. The toll constant intense pain has on a person can honestly drive them to madness, in a heartbeat. How long does that heart manage to keep beating?

 

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. :)

 

The Windy Shadows

As I watched the 2nd to last 'House' last night, I realized we actually have more in common than just chronic pain. & dependence on meds. & grouchy attitudes at certain times. ;) I love mysteries & puzzles as much as his character, but of course in different ways. I've always loved mysteries-I think my love for the Mystery Machine & the gang from Scooby Doo started it, & I have never looked back. At least 85% of my books I own or borrow from our incredible library (which lends loads of ebooks!) are mysteries. My dad & I share that, & our many tv shows we both love involve mystery, & we always put in our bets of who we think did it early in the episodes. My art, photography, & poetry involves a huge amount of abstract mystery. I enjoy the word play & working with word combos that involve a ton of deducing skills. As I've gotten to be a human puzzle & try to put together the unique pieces of my illnesses, I've gleaned skills. Anything I read, watch, even hear I use as tips or tricks in coping. Some are as simple as focusing on an intense film & others are borrowing survival skills from survivors & detectives. As I watched the really brilliant PBS 'Sherlock' tv series last night I felt it so much-I had a fever & was all covered up, watching the pair of them on the moors looking for a giant hound & having all the lights off I felt like I had the perfect mystery combo. Sick girl, puzzling story, windy shadows, cat knocking over a glass & scaring me to death (as the horror movie cliche goes) as I huddled under blankets watching Baskerville hounds. I recently got all the Sherlock stories for 99 cents, & am also reading at least 4-6 other mystery thrillers as well, & gaining every bit of wit & wisdom to take away with me on this insane journey.

 

Spinal tapped out

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

 

 

 

 

My last day of the #HAWMC month challenge

Today, this last day of making up the missed days from this month, we are to find a picture on Flickr & connect it to our health focus. I'm cheating a bit...but let me explain. Last night I went out to take a picture of the super moon. After getting back upstairs & into my room, I started to fall. I caught myself & only fell halfway-ish, but the little slip ended up leaving me bruised, my toes bent backwards, & all of the force of it jamming into my pinched nerve. It hurt, & I woke up so very sore & tired today. I laid down on the heating pad which helped, had my iPad on Pandora radio (a channel based on instrumental music), read on my kindle, & played Words with Friends. I was in pain but I was content. I had the perfect position to have healing heat, music, a great book, & a good game going where I was actually keeping up. I fell asleep. Hours go by & I wake up. My body & back feel like I've been in a car wreck. I can't manage to get up for an hour. I take my morphine & wait for it to work, & I reflect back on today, with my moment of contentment.

 

 

I write about my health because...#HAWMC/WEGO makeup blog

I write about my health because it became an outlet, using words & my self-documenting pictures to get out the things inside me. It became therapy. To pour out my twisted mind & soul & pain keeps things from becoming so bottled up-so crushed without oxygen that I'm ready to implode-from becoming a human bomb & taking out a city block. Figuratively of course...please don't put me on some government watchlist! When I became housebound my parents very lovingly became exhausted from my needing to grieve & get things out. The few therapists I tried said I was pretty much doing all I could do & when I showed my last one my pictures, he said that was the best thing I could do-to blog through my pictures & words. I love that I can educate as well-for invisible illness people usually don't look sick, & I wanted to show the times that we actually do. Very often I'll come downstairs from my bedroom, & as my parents glance up at me they say things like 'honey, you just look like you're about to die!' Lots of times it's that I'll wake up in the middle of a dream & still be in that sleeping/waking nightmare that takes awhile to get out of. Fibromyalgia patients don't get the delta wave sleep most of the rest of the world gets-you know the levels of sleep-REM, etc. Sleep labs have shown that we are missing our bodies delta wave sleep stage-that is the stage of sleep where among other things our bodies heal ourselves. This is science-not something I read about on some sketchy website. When I wake up from the middle of a dream & not slowly wake up normally it exhausts me. All of this is to say that my blog is for me selfishly as it's cheaper than therapy...for people who are coping with illnesses of any kind as well...& to educate. What started as just a picture a day turned into me writing as well, although there are times a picture says it all, or I just can't physically do anything else. Thanks #HAWMC (health advocates writers month challenge) for getting me to branch out this month. This is my next to last makeup post, & I have loved it!

 

Superpower day-day 3 makeup

If I had a superpower right now it would definitely be the power to shield myself from things I don't need to hear or feel, like guilt for something I didn't cause-the kind of guilt that comes when you are dependent on caregivers & people for everything. They never mean to make me feel guilty but of course I do. Today dad went to pick up two medications-insurance never pays for one but they always pay or it anyway. I get downstairs tonight. I usually come down every night & sit on my parents bed & watch tv. When I first got here 5+ years ago I would watch tv with them, but my body's bizarre reaction to chairs & sofas got too uncomfortable, so they watch in the den while I'm in their room. It's my only real socializing of the day. I get my food, as well as Chai bunny's & then go back up a few hours later. Anyway, dad mentioned that they only had one prescription. Turns out the pharmacy just accidentally overlooked it, as most people can't pay for drugs not covered, if they have insurance at all. I called & talked to the pharmacy & as soon as I said my name the girl said 'oh yes, we missed putting that through'. I feel guilty he wasted a trip. I feel guilty on a summer weekend in a tourist town with bumper to tourist bumper traffic dad has to go back tomorrow. I feel guilty about the hundreds of medications I'm on, that I'm on anything at all. Being able to block out guilt for all of my sick friends would be my superpower.

 

 

Day 2-makeup-#HAWMC/WEGO-quotations

We're given the task to find a positive or negatively feeling quote, & without missing a beat I think of one by the savagely honest Sylvia Plath I read a few weeks ago. 'I am living now in a kind of present hell, and god knows what ceremonies of life or love can patch the havoc wrought.'

As we are moving soon, & I'm leaving my drs who love me & really care about me-all I can do is worry, have panic attacks, & I keep forgetting to breathe. People well meaning keep saying I'll be fine-it will be fun-they'll come see me-which is great, but yet they don't understand the fear of them making plans, calling in sick to work, finding babysitters, etc just to get a call from me saying 'it's one of those really bad days' & canceling their trip. The guilt of always disappointing people-like during this past Thanksgiving dinner having to go upstairs, not being able to say goodbye to my two nephews (1 who I had just met as he was 6 months old) & beloved brother & darling sister-in-law. I know this may be the land of milk & honey-a great doctor looking for a person so puzzling he/she will be thrilled to take on my case. Of course being closer to loved ones will be great. I see all sides-I really do, but right now, this day, this week, as shingles continue to grow larger on my leg, the other leg swells so much all the blood vessels break sideways, & panic attacks are commonplace, the above quote resonates like an old friend's laugh.

Time capsule-makeup day 1-#HAWMC/WEGO

We are to put together a time capsule about our specific health focuses, illnesses, stories to be opened in the year 2112. Of course I would provide news clippings of medicines that were used, treatments available, etc. All of the cold hard facts...but much more I would let my pictures, my old journals from when this illness really took hold, my personal story put a face on fibromyalgia. I would include my normal daily life. How I wrap into myself, iPod on & noise reducing headphones in-dad being my ears for listening for the nurse to call me back-what music I listened to in waiting rooms. The paintings I did when the pain got so bad I couldn't sleep. What movies & books I took lessons from in survival skills. Most important I would let my self portraits speak for themselves. They would be the face of what this does to a person, & I would include pics from before I got so sick as well, though I look mostly the same-but showing my life overseas, teaching, being a productive citizen of this country.

 

 

 

 

 

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!