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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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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Migraine dazes

I don't have migraine headaches often, but when I do they take me under. After taking Chai bunny to the vet Wednesday, I took a nap & woke up feeling as if my neck was in a vice & there was a softball between my eyes, pulsating & waiting to explode. It is still here but has moved to the right temple. All I can do is try to sit or recline while supporting my neck until this passes. I will fill you in later about Chai bunny's magical adventure ;)

 

 

Leaning into nothing

Sometimes what I think is a solid thing to lean onto-something that will hold me up-I see it's actually dark & missing. I'm leaning onto the abyss.

Earlier tonight mom noticed-again-that as my permanent sitting position is Indian style-it leaves red patches on my legs where my legs are smushed together. It worries her. I get that, yet I cannot sit with my legs extended without sharp pain in my lower back. Anyone with back problems-imagine when it is worse-after standing a long time or after doing certain household chores-imagine that searing pain whenever you stick your legs out. Even a tiny bit-that's what I feel in my back unless I'm sitting on a bed with my legs crossed Indian style. I would love to be able to casually fling down on a couch, my legs propped up in front of me on a table, or curl up in a comfy chair with my legs dangling over the side while reading a book...but I can't. That's one reason doctor visits are awful-sitting in the waiting room physically hurts. It sounds so ridiculous but totally true. It depresses me so much that this fact gets questioned & exists. I feel I'm in such a dark hole & surfacing is so far away.

 

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!

 

Modern Leper-Day 11-Theme Song (WEGO #HAWMC)

Today I'm to imagine if my blog had a theme song...words, music style, etc. After the day I have had I can barely sit up, much less write a song, but I have a song so near & dear to me that anything less wouldn't be fair. I had gotten a free sampler & at one of my many neuro apps, like 3 years ago, in the waiting room came across this song. It stunned me? It had lyrics like 'I am I'll, but I'm not dead, although I don't know which of those I'd prefer'. It was raw. Honest. Yet set to the happiest Scottish barn dance tune (not that I've been, but you get me) & had awesome cuss words that emphasized my wanting to fight in an honest manner, & I don't know of many in this illness(es) who haven't used bad language-it's a savage disease. I don't give it the upper road courtesies of not sinking to it's scheming manner.

Today I had my left sciatic nerve shot full. Was told I needed a spinal tap next month, May 6th, to again rule out MS. Didn't get a pain shot but instead out of the blue got pulled into a physical therapy meeting. Those two women knew more about fibro than most doctors. They had to push in on a spot as we talked about the possible lymphedema in my leg, & it felt like they had electrified my sciatic nerve with a taser. They feel my sciatic nerve is so bad it could be breaking blood vessels sideways from swelling hip to ankle & not necessarily lymphedema. They helped but holy shit, where she pushed in on my hip feels like I got hit with a sledgehammer. I was numb yet hurting so badly, & on the way home, once again, without discussing it with me I questioned dad on something & he had to admit that they found a house a few weeks ago, put an offer, got it, & close on it just days after my spinal tap. When asked about doctors? 'none yet that can help with the pain medication treatment plan, but 4 possibles to watch your spinal implant' if I get it. Wait, so he thinks fibro is boiled down to just my back? Are you freaking kidding me? And they promised we would not move until a doctor could care for me like my 3 doctors here do. Guess that's out. I turned on the latest Ryan Adams cd, stared out the window, & haven't seen them since.

 

The Modern Leper, by Frightened Rabbit

A cripple walks amongst you
All you tired human beings
He's got all the things a cripple has
Not working arms and legs
And vital parts fall from his system
And dissolve in Scottish rain
Vitally he doesn't miss them
He's too fucked up to care
Well, is that you in front of me?
Coming back for even more of exactly the same
You must be a masochist to love a modern leper
On his last leg
On his last leg
Well, I crippled your heart a hundred times
And still can't work out why
You see, I've got this disease I can't shake
And I'm just rattling through life
Well, this is how we do things now
Yeah, this is how the modern stay scared
So I cut out all the good stuff
Yeah, I cut off my foot to spite my leg
Well, is that you in front of me?
Coming back for even more of exactly the same
You must be a masochist to love a modern leper
On his last leg
Well, I am ill
But I'm not dead
And I don't know which of those I prefer
Because that limb which I have lost
Well, it was the only thing holding me up
Holding me up
Well, I'm lying on the ground now
Walking through the only door
Well, I have lost my eyesight
Like I said I would
But I still know
And that is you in front of me
And you are back for even more of exactly the same
Well, are you a masochist to love a modern leper
On his last leg
And you are not ill
And I'm not dead
Doesn't that make us the perfect pair?
Just you and me
We'll start again
And you can tell me all about what you did today
What you did today

#HAWMC WEGO Day 6-Health Haiku plus (Tanka)

I just saw the April WEGO health writing about health all month in April, & as I'm a few days late the 5 days I have missed I'll do in May. Today's focus was a haiku, the traditional 5 syllable 7 syllable 5 syllable Japanese poems, or doing a Tanku, adding two extra lines with 7 syllables each.

 

Yesterday mom & I had back to back ENT dr appointments, as we both have terrible chronic coughs, etc. Mine is caused by allergies-when I moved down here 5+ years ago I developed horrible allergies & this deep, chronic cough. I even put Alabama on the new patient sheet under 'allergies'. I don't think the dr found it funny...but when I lived overseas, mainly the Czech Republic, I had runny nose & colds but little to no sinus or allergies. It was just fantastic-to carry pocket packs of tissues for the cold weather only!

 

The two hour round trip took a toll on me & today I'm fevered, sore, & feel like I was dragged behind the car & not just in it. Riding in cars makes my bones feel like they are breaking, but I do try & bear in mind that every little discovery is yet another piece in this disaster of a puzzle that completes me. Here is my very first haiku, or tanka, along with a pic that goes with my day.

 

 

The pokes the prods hurt

 

A necessary evil

 

Leave me aching so

 

Extra doctors add knowledge

 

To my jigsawed puzzled life

 

Snowed Fibro White & the 7 Phased Dwarves

The ever present Sleepy

 

The fear

 

The Lost

The Numbed

 

The Angry

 

The Pained

The Confused

 

The Depressed

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.

 

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.

 

Did I tell you? Do you know?

I gasp as I have my mouth covered. Covered from my parents hearing me-as I hold my gasp in the palm of my hands, I suck in for air to be met with salty, wet palmed skin meeting my mouth. Dad has gotten me beer as my spinal shots, morphine lacking relief has failed. A last ditched begged effort for pity & relief. Did they hear me? Did I stifle enough? I try so hard as beer is as expensive as medicine that has yet to find me a hiding place.

 

He has bought me full-on Budweiser. The Czech original, corrupted by greedy Americans. I listen to William Fitzsimmons, & the loved Julia Stone on his gorgeous album. On my iPad, I can see it as orbiting planets & moons as far from the original album as I am with relief on the app 'planetery'. I watch as my songs orbit moons. Did I ever tell you how I love space? Did I ever tell you the 'Budvar/Busweiser' story? How many key things did I forget to tell you, as I thought we had all the time in the world? Will you hear this song & know why it makes me cry? I hope I did, or that you find it in my SOS emails. You're so smart-& knew me so well...but did I know it all myself at the time? Will you figure it out? As you travel our world, will you figure it out from my missing pieces?

 

I hope you think of me as I was, as the current has too many tears to stifle. So many tears yet to find.

 

 

No pain shot makes Marnie a sore girl

My neuro clinic was out of pain shots but full of spinal shots for my sciatic nerve roots. This is the result.

 

Dentist, dentist, dentist, goose

In trying to get in all things dentist before the bought insurance runs out, I've spent way too much time there lately...at least or my back & flaring fibro's sake. I've been too tired to eat or do much of anything. Have four fillings later today, then my rescheduled primary care doctor tomorrow. All I want to do is curl up again & stay far, far away from any medical establishment.

 

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.

 

 

The cleaning fiasco

Went to get my teeth cleaned today. Huge phobia of dentists, & hadn't had my teeth cleaned in a long while. Those of you professional spoonie sick people get how seeing 3-5 doctors regularly doesn't leave much time for dentists, & disability doesn't cover dentists. Lovely. Anyway, after getting 2 out of my 4 needed fillings & learning that laughing gas really helps keep my back ok during the process, I agreed to get the cleaning as they promised having laughing gas to get me through it was fine. They were fitting me in, so dad & I waited for about 30 minutes, in chairs that hurt so much, which feels ridiculous saying, much less typing & publishing for the world to see. I kept thinking, 'well, you'll be under the gas soon' to keep me from leaving. So they call me back & we soon hear that oh no! The one room in the joint that doesn't have gas in it is her room. She suggests we just do full mouth X-rays. Against my better judgement I agree. Dad had to run an errand & left. She not only does X-rays but for some unknown reason does every single tiny bit of every tooth with that evil 2-sided hook torture tool, while I'm bleeding everywhere & she is scolding me for not coming in sooner as my insurance, bought from them runs out in a few weeks. She calls dad back & tells him how bad my gums are & that I need serious gum therapy. This is now an hour and a half later. She brings my dentist in as he has to check me before I leave. He comes in & all four of us are in the room, & tears start just pouring down my face...though I'm completely silent. She didn't mean to but blamed the medications, stress, etc for why my gums are so bad. & heredity of course. We finally leave, & I weep openly for about an hour after. I now have a back that is screaming in pain, & it feels like muscles are being fed through a meat grinder while still attached to my bones, ligaments, & spine. Chai bunny got in bed with me & tore apart the goodie bag with the free floss, toothbrush & paste, as if she sensed hat new foreign bag was the source of my crying. So Monday I have part 2 of a promised gas filled cleaning, & Tuesday my 2 other fillings get filled. Then the next week neurologist to give spinal hots to try & undo the damage done today.

 

 

 

Mean girls

Recently I had a strange virtual encounter. And not of the fun kind...my blog automatically links/is networked to my Facebook, & though I usually post it with an intro, it goes up regardless. A girl who I rarely talk to-one of those friends we all have-you went to high school or university with them, but you aren't sure exactly who they are but you have 37 mutual friends...I think we all have those & some have become my favorite people on earth, some not. Anyway, I don't know if she knew the blog attached was mine as it doesn't have my name & could be something I just put up on my page, but she made a pretty rude comment asking where I got such s#+t. I didn't know what she meant but it came across, & I heard privately from people who were really upset that are spilling out my heart in the particular blog she wrote that on my Facebook page, for my nieces, cousins, etc to see, that she felt my attitude/me not 'don't worry be happy' feelings weren't how she subscribed to life. As my mom taught me, I considered the source, though I still can't place her ;) & this morning unfriended her. She won't care & it doesn't matter, but I realized how lucky I am to have friends who understand firsthand or support me even though they can't totally get these illnesses. It really hurt though, & it bothered me all week. I'm letting it go, after a week of wounded pride & waiting to see if she would say anything, then a few hours ago seeing a status I felt was ridiculous pushed the unfriend button. Weight lifted.

 

Happy spiney valentines!

 This is a couple of days late...but wanted to share my valentines day. The night before my parents surprised me with a little, adorable, perfectly tiny Kindle as a combined early March birthday, Easter, & any other spring holiday you can think of-it's perfect for me, & I took it with me to my neuro appt on V-Day. I absolutely love it, & have already started a ton of new free books. ;)

It even let's me underline & write notes to my heart's content!

 

Prettying up the pills

 I get so sick of taking medicine, so I did a photo series making the ugly in my world...though I depend upon them for pain, sanity, etc...a bit prettier. 

 

 

 

 

 

Dentist after the fall

 After falling almost 2 weeks ago, it was time to see the dentist as my teeth aren't hitting right & biting down isn't working. We were scared I had bent my bridge (front 4 teeth on top) & that it might need replacing, etc, but thankfully it just bruised the gums a lot & there is still a good amount of inflammation affecting my mouth/bite. Also my right side of my jaw is swollen & sore he discovered. So all in all it went much better than I expected. 

 

The bad part...& many of you professional sick people will understand, just sitting in the dentist's chair (even with my pillow I brought under my knees) starting shooting pain from my back & pinched nerve within a few minutes of sitting down. It's so hard to explain why later in the day & days after why sitting in a nice, cushioned chair can really hurt in the long run. I have 4 cavities I have to take care of in 2 separate appointments later in the next few weeks. :(

 

Present skin

 I have a pinched nerve in my back, which after the fall a few weeks ago has been truly unbearable. Like I want to blow my head off or be put in a coma just so I won't be aware of the pain. A few minutes ago, I reached back to adjust the always present ice pack for inflammation that has filled my body like I'm a pod person, & when I did I barely grazed my skin. Not with a fingernail, not with anything sharp-just my finger barely touching my skin...& it felt like I had taken a lit match & held it there to burn & fester. I try & see my life like this pic-the left exciting, with beautiful colors & tons of pebbles representing events, Super Bowl parties, travel, drinks with friends. The right side is my now life-giant circles of bland colorless life.