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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A bit like House, MD

Anyone with chronic pain comes to realize in time that the never ending stabs of constant hurting can & does come out as anger. I loved House, the TV show-though I'm not the crazy puzzle loving jerk I have my moments. Every single time I see my cane I get sad yet angry simultaneously & want to paint racing stripes on it-my sarcasm runs deep. We never mean to lash out, yet we do. Most of us immediately regret it & hate ourselves for letting our pain spill out onto someone else's life. Recently I publicly said some things I regret-as they were spoken out of sadness for the past & friends I used to be able to count on...& took it out on someone who wasn't in that category. My lost past is probably the biggest source of emotional pain I've got. Anyway, I talked to the innocent person & apologized, but I hate that I let my pain hurt him. While I find venting in the right forum helpful, I must remember to spare the innocent ones.

My great uncle's cane matches my Indonesian triangle piece so well...maybe racing stripes aren't the right way to go ;)

 

Caned sadness

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Gutting realizations

For those of us cursed & sick, we realize the distance of family & friends very quickly. Today I find someone who I helped in past years (before kids & marriage came into play-again) to the safety & detriment of my myself-including hundreds of dollars-that some people have the unique gift of 'growing up', having family, & getting the leisure of forgetting those along the way-kids, marriage, etc that people like me don't have. It's a smashing of heart realization that many, even family, leave you behind to protect their new family. I get it, but I don't. I didn't chose this-I'd give anything to be behind that white picket fence, but that's not in the cards for someone like me. So I suffer-through this move, weeks without drs or help, & face the pain alone, while others home life sleeps in peace & without chance. They slumber & dream while I lie awake, screaming to no one in particular in agonizing pain. What a difference 6 years makes.

 

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Who I was & what I wore

Funny how our wardrobes somewhat dictate or openly invite the world into our personalities-we show them very intimate facts about us simply by what we wear. Who I used to be vs now are as polar as opposites can be. People like me wear elastic waist to avoid buttons. Panties 2-3 sizes to big so as little material as possible touches us-for me my lower spine. Clothing becomes something to tolerate, not express. For a fashion lover like I am it absolutely sucks. I had to go through my wardrobe today to keep, donate, or throw away. Several things had literally worn out-evidently I worked & played really hard ;). Seeing my grad school/Little Rock years gutted me. Amazing how an item of clothing can hold more memories than a camera. Some items I had to keep, way to old & small, but to put in the back of a drawer to pull out when I need to remember. Here is who I used to be, that few of you were able to meet.

 

My absolute ultimate me item. A very thin long sleeved patchwork shirt-ripped, sewn & repaired beyond repair, & scented with Brazil nights on the beach, teaching days at UALR, & my old tangerine perfume. I so gently put one hand & arm through a sleeve, just to feel the old me again.

My orange long patchwork skirt. Usually worn with combat boots, a denim shirt & confidence. So great how a piece of clothing gives you confidence that no self help book ever could. It too was worn all over Little Rock, Brazil, etc. I normally wore it with the next item.

 

The simple denim shirt/jacket combo. The pockets were over the chest, & great to stick money, my ID, phone, & lip balm in...look closely at the bottom right of the pocket & you'll see the cylinder shape of a Burt's Bees lip balm. I wore this as a shirt or jacket at least 3-5 times a week.

 

My wardrobe had loads of shirts & jeans paired with blazers & tennis shoes. The blazer dressed it up for teaching, & the shoes for walking all around that seemingly huge campus. I loved mixing stripes, so I often wore pinstriped blazers with totally random striped tees.

 

My favorite statement...'your future ex-girlfriend'. The dating scene post divorce, being overseas for a decade, etc was a new world. I was shocked people still stood you up, broke up through emails, & other fun dating no-nos. I quickly developed a cynical outlook but deep down was the 12 year old asking 'why didn't he like me?'. This shirt at least made me feel that to those possible idiots I wasn't as sweet as I seemed in that aspect.

I don't know who I am now. My wardrobe reflects so little of my true nature, & that is one of the unspoken losses invisible illness people often face...so the next time you see someone like me, remember them for who they used to be able to show.

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Yesterday

Sometimes when a day like yesterday happens, all I can do is this.

 

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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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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.

 

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.

 

Day 29-6 sentence story-#HAWMC/WEGO

I came downstairs yesterday & took my usual place on the bed. I have my necessary pillows in front & behind me, to cradle the body that I've become. I look to my right & see all of the bedroom has been packed into boxes. Pictures, books, mementos, all scattered yet tightly packed into various boxes from other various moves. There is a blank space in the shelves left for a box. I lay down in front of the space, & took pictures of this body packed up though unready to move.

 

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.

 

 

The fear

Many of us live with fears. I grew up with fear twisting around my every muscle, thought, & mind as my brother going through cancer treatments, & later dying left me thinking fear was normal. I used to throw up nightly as my fears took over & my stomach felt it had to release this fear. I got better as I got older, but after getting sick, the thought of getting fired (they ended up letting me resign) or losing friends (count is at 3 significant friends) & losing myself in these illnesses caught right back up with me. I have horrific stress dreams, where I'm usually trying to find something that I never can find/finding my pets starving to death/being back at unusually cruel workplaces/& my family abandoning me. I wake up with this on my mind 29 out of 31 days on average a month. My fears now are moving, leaving my doctors, having to tell my doctors, not finding a good replacement (though I promised that there are no takers & we are supposed to move in 3-4 months), etc.

 

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.

 

 

 

 

 

Masks

We all wear masks at times. Mine lately seem to be mask of the unknown future. Mask of a move. Mask of the old me. Mask of saying nothing & keeping the peace. Mask of hiding how scared I am of leaving my doctors. Mask of feeling forgotten.

 

Worth at least a few words

After yesterday's adventures in dentistry, these pics show better than I can explain how I feel on the outside, inside, my physical self, emotional self, mind, soul, heart, & brain.

 

 

Grieving the small

When people are around that normally aren't, as a sick pro you notice the little things. My sister, husband, 2 teenage nieces, and adorable dog are leaving tomorrow after being here a few days. We've had a great time, & today they shopped, got mani/pedis, etc. Chai bunny got petted a good while by lovely Abby, & loved her...& didn't want me to take her back up. She thumped when I put her back upstairs, as she had traced out to the full attention of someone who is sweet & is able to sit on the floor with her, & not like me-who has to reach down from the bed. Emma got awesome new shoes & Abby the cutest dresses. Cameron & I talked iPad technology, & Sloan & I talked everything. They ate out, took dad to the movies, & did the normal things. I forget how much people really live until they're around. Of course I hold no bad thoughts about any of that, but seeing a dress I might have worn, or a movie I would see on the big screen, etc, a part of me grieves, & parts of me die. That's normal, & if I wasn't that way I'd be lying.

 

 

Self in fade

Often times seeing family, as fantastic as it is, leaves me lonelier than I thought possible. My siblings, both close to my age, married & with great kids is very bittersweet. My glowing, honest, thorough joy for them is also shadowed by the me that could have been, or the possibility that one day it could change. Dad asking in front of the group to go to the movies with hem, knowing fully how bad it is just riding in a car, much less being in difficult seating, trying to walk distances so tough, but feeling like there might be a slight hope that maybe I'll say yes...cos I don't look sick. How do you explain how most chairs are torture chambers? That sitting at the table for 30 minutes leaves one in excruciating pain later that night? The gracefulness that they hopefully will never know that pain, but the frustration felt looking in their puzzled eyes as they try to understand.

 

Groundhog day, the movie

 I have a friend who never really watched tv or movies, but LOVED the flick Groundhog Day. With Bill Murray in it you can hardly go wrong (God I love that man). Funny thing about my life...I live that movie-where everything is the same day after day after day after day after day-did I mention day after day? The only things that change are the number of my falls, which beloved pet dies, & the once a month awesome yet painful neuro doctor visit-awesome cos he is the only person physically close (as in I see him regularly) to me that really, truly, thoroughly gets fibromyalgia, the depression, the extreme sensitivity to lights, flares, & knows why & exactly where it hurts every single time. 

 

 

Now, evidently in a few months my day will change. I will move. I will grieve, yet again, about losing someone I love. But that's par for my course, as losing friends who can't understand why sitting & talking to them keeps me in bed for a few day, or why working 4 hours a week (which my friend said '4 hours a week is nothing!') truly is something impossible in my world, or friends who devastate me more by saying 'you can do it! You'll be fine' having no idea the cost. 

So happy groundhog day to my friend I miss so much I get physically sick to my stomach, who I will always link him & groundhog day, & to those of you whose days vary, I envy you in a sweet way. For you will never know what reliving the same day over again for 5 years does to a persons soul. 

 

Zoe cat, Oct. 25,95-Feb. 1, 2011

 I just woke up, in a frenzied, panicked state. A year ago today, I had to put my beloved Zoe cat, age 15 & 1/2 years old, to sleep. It was the right thing & all that, but it is as fresh & cruel as it was a year ago. My longtime vet had the wisdom after giving her the shot that would end her & listening to make sure her heart stopped to gently wrap Zoe up in the towel I brought her in, to give me visual closure. To see her disappear into that mint green rolled up towel will forever be my last look at Zoe. 

 

I read recently somewhere about time healing, so to give time time, but for me, in this state of the housebound everyday is another long, hard same day, I hate time. Time in this case has put distance from that event but has only broken my heart more. Yes I remember all the good times with Zoe, all the overseas close calls & her little passport that got left in the Prague airport, but right now all I feel & have felt this past year is pain. 

 

 

A poem a day keeps the therapist away

 Not that I have anything against therapists, I just don't (but I'm sure I need) have one

 

 

Grief

 Right now I'm grieving, for things that are happening, & things that are to come, like losing the best 2 doctors I've ever had. & leaving my 2 pets & their graves. I haven't laughed in days, & I can't stop crying. But hey, these pics won some awards.