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.
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