The Insiders

**From my main blog https://questionsmorethananswers.blogspot.com/ **

 

I have had it in my head to write this for over a month. Fear. Fear stops me every time. It’s my biggest hurdle in writing anything, except inside my head. But today the general mood in the world, in the news, in the ether, seemed exceptionally bleak. All I ever want to do with these blogs is reach someone, anyone. And now that we are all where we are, maybe I can help share how I deal with my everyday that isn’t so far apart from your new everyday.
The chance that I could spend a month inside my apartment and not go outside, even without a deadly virus changing the landscape of life as we know it, is something I plan for on the regular. It affects how I plan events and how I shop. I could get up off the couch too quickly and dislocate. Turn to put something on the stove while making a meal and dislocate. Rollover in bed and dislocate. It is all that easily done. Then bam, I am down for two weeks, maybe four. So, I always shop like “What if?” Kinda my Mr. Monk mentality: backups for my backups. So when COVID-19 started to even hint at being serious, I was prepared. NOT TOILET PAPER HOARDING PREPARED, just prepared enough for me. Like a rational “adult.”
Most of the world does not live like I do. People shop for two weeks, or one. Some even for the meal they are making that night. Some of you don’t even cook. Being stuck in your homes without going to your jobs, or out to dinner or movies is so foreign you feel displaced and maybe a bit imprisoned. Maybe at first, it was a novelty. A good time to catch up on that series. Read that book. Maybe it felt like a bit of a vacation. I don’t know how many times I have had people say to me “Oh, you are sooooo lucky. You get to stay home and read and watch T.V. all day long.” Uhuh. I have seen countless memes lately of “Finished Netflix” and the like. It isn’t as fun or as cool as you imagined. I have a friend in mental health and they say they have never been so busy. The stress of being at home with bills, no money, and then the omnipresence of the virus is too much. People are breaking.
The lack of structure from the unavailability of socialization and jobs is forcing people to question their place and purpose. The burden of continued anxiety and money trouble is not helping, at all. I had another friend comment on how she truly didn’t understand how much she gained from going to work, not just the money, the going. It is the routine. Now there are posts telling everyone the day of the week because days are running into each other. These are not new concepts for people like me. The “Insiders.”
When I was a teenager, my Aunt once told me that humans were all in a race to live. They ran so fast that much of their life ended up a blur. I never forgot that. This is a time to slow down. Thing is, not many were prepared to step off the track.
Some things I have learned during my many years Inside: focus on the small joys, don’t compare yourself to others, talk to yourself like you would a best friend and brush your teeth every day. I also watch ASMR videos at night to help me when the pain is too much and I can’t turn off my brain. Check-in with your family and friends. A lot. Use Marco-Polo or Face Time. See their faces. I try to find at least three things by the end of the day that made me smile AND /OR I completed. This includes making a meal, any of my music Instagram posts, calling a friend or writing this blog. Hell, making your bed counts.
Things are flipped upside down and inside out. They might be for a good long while. If you need more tips, I’ll be here. Inside.

Having The FanX Gene

So, the game plan for me to go to the second day of FanX did not go as outlined. I tried pretending I was a normal human doing the routine human things and as a result, I can barely walk or stand today. Today (Saturday) is the day with all the panels I was truly wanting to see: Zachary Levi, Supernatural, Clark Gregg, and the Cosplay Contest. It astounds me what people can do with their cosplay. Imagination and devotion. It is exciting.

Choosing to not push myself to the point of collapse so that I am able to enjoy Easter/Birthday tomorrow is part of the reevaluations I will need to make for future events. Maybe use the cane that I have never used except to gather dust behind the bookshelf in my bedroom? Maybe not walk the floor as much? Maybe change the percentage of panels and floor to 80/20? There are possibly many ways to change my plan of attack so that I can still enjoy my fellow nerds/geeks/fanboys and girls to my fullest and least pain filled extent.

Funny story, at one of the crossways on the con floor, two young men aggressively brushed past me and consequently kicked my right foot out from under me. I am lucky my right hip didn’t dislocate. I immediately hollered at the kid to get him to come back so I could chew his ass. JD noticed so I told him. He wanted to go hunt them down but they got lost in the crowd in a flash. Chivalry mashed up with protective rage. Hells yeah, baby.

Another great story happened when I was waiting for Chris and JD to get their photo op with Lynda Carter. I was in the middle back of the Grand Ballroom, and it was mostly empty, seeing as it was nearly 10 p.m. In the “Living With Chronic Pain” workshop I started, my action plan for this week was to practice relaxation breathing techniques when I got home after these three busy days. With the level of pain and fatigue I was in already, I wanted to be home with Peanut and practice my breathing. So I started some breathing and stretching, listening to the music overhead. Then, these four adorable siblings started a game of tag. The littlest one was dragging his blankie behind him. The second youngest would say “HI” to me every time he passed by. The joy of it lit me up like a beacon.

This is why I keep going. For moments like this. The cosplay and my friends are a major bonus too. Now, learning to do it so that I can sustain the whole event with less damage and pain. Challenge accepted.

 

 

Swiper, No Swiping – Swiped

I posted this originally on my main blog Questions More Than Answers. The main purpose of  Loosest Girl In Town is to talk about how I deal with everyday life living with Ehlers-Danlos Syndrome, Thalassemia, and all the comorbidities that travel alongside them. In this shared blog, I begin to explore/examine the ins, outs, and inbetweens of why I haven’t been dating for nearly twenty years and how my health is a major factor. I felt it was worth posting to both.

SWIPER, NO SWIPING

I have put off this blog for months. Here I’ve been, ruminating about it, talking about it in therapy, even suggesting it as part of “homework” to boost the urgency, so maybe the expectation/curiosity of someone else would light the fire I can’t seem to light on my own. What is so difficult to admit/express/share on here when I have talked about having my legs in stirrups and speculums and so much more? The answer is dating; why it terrifies me, why I shield myself from the pain of it and why I don’t feel worthy of romantic love.

Most everyone has their own grab bag of insecurities to use as talismans from pain. We hold these up (not attractive enough, finances, age, too fat, too thin, imposter syndrome, job security, status) as proof to either not try for a desired goal or as the long long division data that justifies why it will just never happen for you. For myself, I tack on my health to this pile of human mental detritus. My health has turned into not only a bludgeon with which to beat myself but a dome of twisted security. I need to find a way to crack the dome.

I hear it more often than I advertise, “Why are you single?” or “Why don’t you date?” The hefty nitty-gritty answer to that would take up many and sundry blog posts, but to attempt a summation; dating is selling yourself and I feel I have a product that comes with too much damage. I can hear the objections already from the people that love me. “You have so much to offer” and “Do you know what a catch you are?” This is about honesty so I will admit this is where the bludgeon comes out and I start the internal tallying of my “Why Would Anyone Volunteer For This Job” list. It is a thing. I do it well. It has served to protect me for nearly twenty years. I don’t anticipate it ever going away, fully. What I am trying to see in my future is my striving to lessen its power. That cracking the dome notion I mentioned earlier? I was thinking maybe starting with a dating app.

Now, this is where I get completely frozen with fear. I know nothing about them (the last time I attempted an online date was when I had AOL and it was a disaster) and when I mentioned dating apps to some neighbor friends I got “Don’t do it, all they wanna do is f@#k” which wasn’t reassuring, in the least. This is the interactive portion of this blog. I await your stories; horror, love, comedy, drama. I want to know if you love or hate dating apps or if indifference rules the day (as it has for me.)

The only promise I am making to myself as of now is that once I collect all the goods from your recommendations/warnings I will at the very least install an app. That is a big-time step for me. This blog is a step for me. I am also thinking of this as possible material for future blogs and other content because my mind goes directly to the learning experience of it all, of course. Then, after I have an actual app installed, there’s the next step. Who knows, by this time next year I might know what all this swipe right, swipe left business is.

On Pace

When you are person with Ehlers-Danlos Syndrome it isn’t that uncommon when you are in an appointment with a doctor to either have them say they have never heard of it or say “Oh yeah, I think I read about that in medical school once.”  So, when you actually find a doctor that knows what you are talking about before you even go into your rehearsed explanations that you’ve had to use for decades, it is emotional. A doctor that not only believes every word you are saying but understands how it is to be you everyday. A doctor whom devotes so much of her time specifically researching your particular disease that appointments are a long time coming (and worth the wait.)

I had this appointment with Dr. Laura Pace at the University of Utah.

For people in the know I have been struggling with pain every time I eat for quite some time now. Also the digestive consequences of eating, i.e being very close to a bathroom.  Which frankly sucks. I try really hard to keep a good attitude about it, knowing things could be so much worse. All you have to do is spend five minutes on the EDS Facebook page and whining about throwing away your underwear seems indulgent. So when my Mom was having an endoscopy and remarked during conversation that I had EDS to the nurse, Dr Pace came up as an imperative. Bingo-bango I called and I made an appointment. Yes, the wait was a bit. Meh, I’m used to waiting.

To say it was comforting to have someone on your side from jump-street is an understatement. There are many tests on the horizon and a new low histamine diet with no pressure to alter my veganism. They brought in a registered dietician to lay out the plan and explain the goals. I am excited to get started on this.

As I said there are going to be a bunch of tests in the future (mainly GI related) but on the way out of the hospital my Dad and I had to stop at the lab for my two pages of blood tests. The techs (yes it took a tag team) were speculating about why they needed to draw 37 vials from me. The main tech said “We were wondering if you were getting a transplant” or what. I told them about EDS and that I found a doc that studied it. The funniest part was when other techs would come over to check out the tray littered with all the vials. Some had to be put on ice, some hidden in gloves so they weren’t in the light. One tech stood there and kept saying “WOW.” The two techs did the math and said that my blood draw was basically half the amount of a blood donation. Makes me laugh.

I’m not expecting miracles. Never have. But it sure does feel nice knowing that she’s in my corner now.

 

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Check Out The Empathy On Brad

 

With two very public celebrity suicides being in the forefront of the social and private mood, I wanted to talk about pain: the emotional pain that rides on the back of physical pain, the assumption that anyone can quantify anyone else’s pain, the justification of declaring anyone selfish and the use of anger as the barrier in self preservation from what seems like unending despair.

I envisage most people have been connected to suicide. Whether that connection is through a chain as in “I know someone who knows someone” or it is immediate. In my life I have lost a close dear friend, I have a beloved family member that attempted it, a friend that had an active plan at a very young age and another friend that has struggled with suicidal ideations for decades. I don’t think my report is that rare. In fact, a few years ago, in my parents’ neighborhood a father killed himself in his own backyard.

Humans have pain. The physical agony that is twisted and tied into the emotional. Constantly. Spend a day in any waiting room at a hospital. Drive down Fourth South as you enter SLC and watch the displaced homeless with their carts and bundles, swatting away the voices, trying to use the Port-O-Pottys while in wheelchairs. Devote an afternoon at Weber County Mental Health and people watch where sometimes the emotional pain permits a glimpse of what is happening in the most private interiors that make up a human. There is a lot of shame and guilt tied to burdening other people with that torment. So people hide. They mask and compensate. Coping and managing sometimes takes the place of living.

Here is where I share about my pain. About being so stuck inside my body and the fear of it never ending. With Ehlers-Danlos I can get into a pain cycle that lasts for a month. Or more. I can have days where the best thing I did was get out of bed long enough to brush my teeth, pee, give the bunnies water and hay, and if I’m lucky a cup of tea. Leaning on the walls and counters for support the whole way, I get to the kitchen, make my tea and get to the couch. I am lucky enough to have friends that repeatedly invite me to go out with them to movies, plays, concerts and more. Time and again I have to turn them down. I feel such shame and fear that one day the invites will stop. Then, there won’t be any reason to invite me as everyone will know I’ll simply say I can’t. After struggling against my body has gone on for so long, the emotional and intellectual fears begin to dominate, mixed in with comparing myself to others and self judgement. Physical pain, anxiety about pain, round and round I go. One of the blessings/lucky parts about being me, is that while I’m stuck inside the cyclone of Pain+Fear, underneath it all I am waiting waiting waiting for it to end. It could be two months this time, but soon enough I’ll be able to walk into Petco without the employee coming up to me and ask with panic in his voice, as I’m dragging my left leg and my left arm is curled up unusable “DO YOU NEED HELLLLPPP?” I know it will abate. Then later, it will wash over me. I will succumb and I will answer back in tears. Not everyone is as secure in the notion that their pain could ever be temporary.

Now, at this point in the cycle is where I use Social Media as a distraction from the physical pain. It is a cheap and easy way to escape. I would grab the easiest and fastest way out; Facebook, Twitter, Snapchat or Instagram. Again, I don’t think I am alone in this. Not only as a distraction from physical pain, but emotional. I have found for me that if I’m not careful it ends up fueling the distance I feel from the world I so desperately want to join. Would You Like GIFs With That is my blog-post in regards to that. Moreover, this is where the comparing lives fires are lit and stay lit for far too long. The unnecessary shame creep from Social Media into daily life does more damage to self esteem than I think we realize. The urge and predominate course in society is to only share the glowing best bits of our lives as the fear of judgement is paralyzing otherwise. Suspicion is, if you share your damage you only want attention. “He’s an attention whore.” “Check out the Drama Queen.”

You can never truly know the scope of another person’s pain. Nor will you comprehend their joy. It is not ours to measure or value. I have heard it said multiple times how selfish it is to take your own life. How could they not consider the people left behind, and so on. The first time I heard it said was when a boy from my High School killed himself. Everyone around me was saying it. It was akin to an automatic response. A form letter to block feelings. “If I hold up this anger long enough I won’t have to access the dangerous emotions underneath.” Anger knocks out sadness and despair any day. By brandishing words like selfish you’re less likely to access your empathy. Empathy is what is needed in circumstances like these, specially when people reach out.

I choose empathy first. Even if it hurts.

 

Burnt Pancakes

I was supposed to be at the Sundance Best of Fest tonight. Snug in the Park City Library Auditorium seats with my bestie and her best guy, watching some tip top new films and sharing a fun experience. But I’m not there. My body vetoed that. My body has been pretty much an asshole for a couple of weeks and tonight I discovered that my body in asshole mode does not make for a pleasant dinner guest. Or a hostess.

My Mom came over tonight to hang since I couldn’t go out. When I’m in a super long pain stretch, there’s not much to do but wait it out, but being my Mom and loving me like she does, that gives her a great feeling of helplessness. To just watch. Wait. Listen to me try not to cry. So, she does the sweet thoughtful things she usually does, but with extra purpose: She brought tater tots, french fries and Perrier. The Holy Trinity of “What Makes Heidi Happy.”

My Mom came to take care of me. She came to be a mother, and yet I didn’t let her cook one thing, get her own drink, or take her plate to the kitchen. My stubbornness and embarrassment over being weak and controlled by pain kept me on my feet (kinda-leaning on counters, walls and chairs.) I wanted to cry from the pain the entire time, but I waited until My Mom left. Between the excitement of snacking on Red Robin fries hot from my oven while I introduced my Mom to the “Librarians” and giggling about my crush on John Larroquette, I kept trying to take care of her.

Seems to me that when my body is in asshole mode, my brain turns into “cowering shivering don’t show anyone how weak you truly are or you’ll end up in permanent fetal position” mode. Thing is, I needed to cry my eyes out. Still do. I needed her to hold my hand (we tried that but touching me hurts so it was a no go.) After forty years of dealing with Ehlers-Danlos Syndrome and its ramifications I expect myself to be better at this. Clearly, I expect too much.

I have so much to learn. I’m grateful for the patient people in my life that volunteer to come over for dinner. 😉✌💖🎉

Nailing It

This post is kind of a re-post, of sorts. Not a re-tweet. Or a plagiary. I’m doing a copy/paste from my original blog http://questionsmorethananswers.blogspot.com/ . I posted it there originally to explain my absence from blogging. I think I nailed it. My Mom says so, that’s good enough for me.

Advantage Patience

I have only posted to this blog three times since July of last year. Maybe some people noticed, maybe not. I am blocked, for many reasons. But the main is this; pain.

Pain disrupts sleepy time, awake time, why am I not sleeping time and all the times in between time. It washes over every aspect of daily life and you can’t seem to scrub it off. But, then, there are those breaks in the clouds. One day. A bright shiny day where that overwhelming monster of pain is so small it barely casts a shadow. You feel so close to normal that you would skip if you still could. So you grab that day and ride it till you can barely stand, hoping that tomorrow you’ll get back in line for the same ride.

Showing how much pain you are truly in (and I mean truly) doesn’t fly so well on social media, or out in the big bad for realsies world. Phrases get thrown around such as “pity post” or “attention seeker” and worse. So much worse. Instagram and Facebook have somehow turned into this realm of filtered filters through filters (guilty.) No one wants to spend time on anything too real. Anything that might bring them down from the projected reality. A social face of all is well. If I’m being honest, as a chronic pain sufferer, I don’t like to readily admit the levels of my pain. I fight it. I seek every distraction. It doesn’t always work though, and when it has been months and months on end, my optimism can become depleted. Never emptied, but that pool is hella shallow.

Now to that term Chronic Pain Sufferer. To suffer is defined as;
1. to undergo or feel pain or distress:

2. to sustain injury, disadvantage, or loss:
3. to undergo a penalty, as of death:
4. to endure pain, disability, death, etc.
I get it. It fits. The disadvantage. Yes. The Loss. Yes also. Then I think of the advantages I’ve had in my view on the world and my empathy through EDS and pain.  I have had losses in personal relationships and the distress it still causes is something I am working on daily. I wake up every day grateful that I have people in my life that want to go and do things with me. Friends that want to spend time with me. Not everyone has that. I do. I am totally bragging that I have friends. Great and wonderful beautiful friends. They know I’m in pain. But I don’t show them all of it. They see the crust, the top of the iceberg. Only My Mom has seen me in full throws. Tears that you aren’t quite sure when they will stop. She’s the safest net to dare allow myself be cradled.
I want to switch up the pain name game. I’ve been thinking of myself as more of a Chronic Pain Endurer rather than a sufferer. With endure being a verb, I imagine it as my actions and reactions during and owing to pain. Endure is defined as;

1. to hold out against; sustain without impairment or yielding;
2. to bear without resistance or with patience; tolerate:
3. to admit of; allow; bear:
4. to continue to exist; last:
5. to support adverse force or influence of any kind; suffer without yielding; suffer patiently.
To hold out, with patience and by doing so sustain without impairment. I think a fine trick would be to continue to exist, without yielding to pain. Ultimate EDS Merit Badge goal in sight.
My definition of not yielding isn’t the same as it might be for everyone else. For now, one piece of my not yielding is sharing how it is to live inside the body of a human with Ehlers-Danlos and Thalassemia without worry of how uncomfortable it might make the people in my life and social circle that don’t know what to say or do. I’ve never expected anyone to have the right best things to say. I’ve never courted pity. I promise. What I have courted (possibly vainly) is a connection to people with life-long, persistent illness and pain. To maybe let that one person with a chronic illness read that one phrase and go “Oh my word, that’s just like me” and then the world gets larger and smaller simultaneously.
Not everyone on this blog and my Facebook is interested in how much it hurts every time I eat or that I dislocated my knee AGAIN! So, the answer is to write on my EDS blog, https://loosestgirlintown.wordpress.com/ and not publish it to Facebook anymore. I’m hoping by releasing myself of that apprehension, the part of my mind that needs to be writing for this blog will be free as well.
This blog will continue to exist, as will my pool of optimism.
tennyson yieldrainbow puddle

Good Going

Someone asked me today to tell them something good about my life. They wanted to hear all the good stuff happening, anything. I blanked.

At first. I had just then come from a frustrating (trying not to burst into tears while in public) visit at the Doc’s and my view was pretty dim. Kind of a “so, this is it huh?” Realizing the levels of pain are going to be standard operating procedure and that the sources of my pain (EDS, Thalassemia and CRPS) are what they are. They’re here to stay and with them so will be new struggles and undoubtedly be new and higher levels of pain.

It’s startling how fast the mind works. Between the moment I blanked and the next, I somehow rerouted a lifetime’s worth of memories that could have ever made me smile, and the people that are always there to give their selves to me. And bunnies. Bunnies Bunnies Bunnies.

I never got a chance to tell her any of this good stuff about my life because by the time it was my moment the conversation had moved on. But I kept it going in my head. I think I’ll keep it going. 7751674

Spelling Test

I had to go in for an MRI on Tuesday.  Checking things out in the lower back arena.  Lots of pain, range of motion pretty stinky.  I mean, I’ve had pain in my back since my early twenties but this kind of pain and the decrease of functionality is an issue.  Another issue.  So, my new back doc is on the case.  We are on top of this.  Go Team!

As I was saying/typing, I went in for an MRI.  My new back doc ordered this to get the down and dirty before we can go any further and set up a solid plan for treatment.  Or even know if there is one.  As usual there is the familiar paperwork and questions.   When I get back to the room where the magic will happen the MRI guy gets down to specifics which is his job and I appreciate when people do their job well: do I have any metal in my body, have I had cancer and do I have a pacemaker.  I tell him plainly I have the staples left behind after surgery from having my uterus removed for cervical cancer.  He pauses and looks me straight in the face and says “Huh, if you think that’s bad you should see people with ovarian cancer, now that’s really bad.”

You know when dogs hear a noise and they turn their head and stare, trying to figure out what the hell they just heard?  I did that.  To this guy.  This dude.  That just now said those words point blank into my face.  I stood there, squinting my eyes and said “UNLESS it’s happening to YOU.”  Then I waited.  He looked up from what he was writing and actually looked at me.  He sank back into his shoes.  He shrunk about an inch as he exhaled.  He blinked a couple of times then answered me with “Yeah, you’re right.  Unless it’s happening to you.”

We then talk about why my doc sent me in the first place.  He couldn’t spell Ehlers-Danlos so I spelled it for him.  This isn’t a surprise or new, but by now I could tell he was feeling quite foolish.  I let him.  For the rest of the visit he was rather over friendly and ebullient.

Pretty sure he can spell Ehlers-Danlos now.

 

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Mrs. Two Lumps

I popped my left hip out last night.  I was walking, from the kitchen to the living room.  It wasn’t one of those Ministry of Silly Walks walks either.  Well, maybe after my hip popped.  It went out, then in, which is preferred.  I have had my right hip stuck in the partially in/partially out position before.  Don’t recommend that.   In retrospect what seems silly to me (not haha silly but bordering on absurd) is that I am now at risk of dislocating simply while I ambulate.  I am careful when I get off the couch, get out of bed, get out of cars, roll over in bed, get out of the shower, go up and down stairs and on and on.  I don’t like it when people walk behind me when I am in a group.  I get severely nervous.  I’ve been bumped too many times and then bam, knee is out.  Plus I’m slow and I don’t want to hold up anyone and the thought of them watching me gimp from behind is hella embarrassing.

When I was younger, we are talking elementary and middle school age, I wasn’t as embarrassed about being so freakish.  I took to it.  Took advantage of it.  Friends would ask me to do tricks:  Jump chinese splits, clasp my hands behind my back and while keeping them clasped bring them over my head to the front of my body, fold my fingers over each other and bend my wrists back and forward, stand with my face against the wall then do a back-bend bringing my head between my feet, lie on my stomach and bring my feet over my head and rest them in front of my face (this last one I would do while watching TV.)  I knew I was different and by volunteering to do these tricks I saved myself from being teased when all of a sudden I would go missing from school for an EDS related illness or I would break a bone from something so simple as tripping.

Now that I think on it, I guess I have my own silly walk.  Priory of Preposterous Promenades?  Cloister of Wacky Shufflers?  The thing is for me to remember to laugh at myself, and the ridiculousness of it all.

 

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silly walks