I’m on the phone with the specialty pharmacy making my first medication and supply reorder for my now at home Immunoglobulin Infusion Therapy. Here’s a little snippet of the conversation:
Beleaguered employee answers my call and with absolutely no vim nor vigor starts with: Hello. Thank you for calling Accredo. This is Mel (sigh) how may I help you.
Me – Hey Mel! (Totally masking that all I want to do is cry because who wants to call in every month and order all these supplies and meds and needles and have that in your house where you can’t escape from it) I got the messages from you guys that it’s time to order all my stuff for my next infusion. So, that’s what I’m doing!
Mel – Okay. We can do that. (Heavy sighs)
Me – Um, the automated system said I needed an account number, buuuut, I either don’t have one or just don’t know it. I do have my supplies list that my nurse filled out for me. So, that’s a bonus.
Mel – Sounding perkier and perkier as we jointly go through the list and formulate my order. It gets dicey when Mel asks about a supply that’s not listed. At all.
Mel has to ask the usual medical questions – weight, have you been admitted since the last infusion, any change in medications etc etc.
Mel – Any new allergies?
Me – No. Still allergic to Assholes.
There’s this quiet, as if all the air had been sucked out of the space between who even knows the miles between us.
Then the stiffled giggling starts.
Me – I don’t think the Infusion even works on that.
Mel – You’d think by now they’d have a spray. (Full on cackling now)
Me – Just right in the face. Who needs Bear Spray. I have Asshole Spray.
Mel – Can hardly breathe.
Mel – (Finally stops cackling long enough to take a full breath and tells me) Man, that was funny.
I’m getting my order on February 7th. Sadly there’s no Asshole Spray in the order.
There’s been some stuff brewing on the health front that I haven’t been sharing. I did share that I was seeing a new Immunologist and that there were tests being done, and I stopped there. Well, seeing as tomorrow marks my 12 Year Anniversary of having The Cancer removed from my body and being Cancer Free, I think that deserves at least a moment of reverence and gratitude. I mean, they initially gave me five years. Here it is, twelve years later. Here I am. Not. Too. Shabby.
And here’s where I share about the adventure into the new. Or maybe not so new? We’re not quite sure. On top of my lifelong Thalassemia Intermedia, my Immunologist diagnosed me with an additional blood disorder called Hypergammaglobulinemia (trust me I’ve practiced how to pronounce that.) It is an immunodeficiency disorder where a person doesn’t manufacture enough Immunoglobulin. I affectionately call them my Goblins. I don’t have enough Goblins to fight off infections. We were in the office chatting about how this happens and my doc said “I know how THIS happens, I just don’t know how this happened to YOU!”
The risk of infection right now is particularly worse because of the size of my spleen. I mentioned my Thalassemia earlier and that is what has made my spleen enlarged my whole life, since it is the lucky organ that gets to filter my wonky ass blood. Unfortunately it has enlarged enough to warrant being removed. Sure, it hurts all the time. Every time I eat, or drink. Or sit down, or lie down, or stand up. It’s like an organ mosh pit with the spleen being the asshole that needs to be kicked out by security. BUT the risk of infection gets EVEN higher once a Splenectomy is done. Just not optimal. None of it is really. And yet…
That’s where the new fancy meds come onto the scene. Intravenous Immunoglobulin Therapy (IVIG) or what I will be getting, Subcutaneous Immunoglobulin Therapy (SCIG.) Now, these meds are hella not cheap. Some therapies can cost up to $40,000 a month. A MONTH! Why is that? Because it’s a blood product. Not so fun fact – the U.S. is the only country that reimburses (pays) people for giving blood. The world outside North America is solely on a donation basis. That is why the rest of the world relies heavily on the U.S. blood product supply. Hint Hint – donate blood if you can. 💖
My new infusion will be monthly, at the clinic as they have to be supervised. Maybe after a year, I might be trained enough to do them myself. Until then, I have a brand new epi-pen (feels totally weird.) Each session will be at least 2 or up to 4 hours long. Plus the 2 hours driving time, there and back. Eventually, I’m hoping to find a way to ride the train from Ogden and arrange transport from the train into the office so I don’t have to hold someone hostage at the clinic during the infusion.
My goal from this is to keep my spleen and not get any infections. Feeling better would be a nice side bonus. I spoke with my POTS specialist and when I updated him on everything his eyes just got wider with every question I posited. He’s never heard of anyone with Ehlers-Danlos Syndrome, Thalassemia Intermedia, Hypogammaglobulinemia, and POTS, while needing a Splenectomy. His conclusion (like mine) was that this was inevitable. My body’s ultimate end state with so many cooks brewing all this deliciousness simultaneously. At one point I asked him what he thought would happen to my POTS if my spleen was removed and he honestly had no idea. Which was both comforting to hear a doctor admit that and also scary. I answered “Well, shit.” And we laughed.
A new term I’ve learned recently is called Glimmer. It’s basically the opposite of a trigger. Glimmers are those micro moments in your day that bring you joy, happiness, peace, and/or gratitude.
As a chronically ill person, I seek Glimmers without trying. It’s an every day thing. Yet, it is easy to forget. I have a feeling there will be so soooooo many Glimmers on this new journey. Will it all be shiny? Oh hell no. And yet I’ll be there. Seeking for each one.
I love when it rains. I delight in how the sky begins to darken and the air gets thick and the ways you can feel it on your skin even before a single drop ever touches the ground. I love the atmosphere of it all. The anticipation, the knowing. Most of all, I love the smell. Not only does it smell better than even puppy’s breath, Petrichor (a pleasant smell that frequently accompanies the first rain after a long period of warm, dry weather) is simply a magnificent word to say.
And yet, my body does not. At all. It reviles inclement weather. Inside this body of mine I have become as good as or better of a forecaster than any weather person on television. I can tell you that a storm will be here three days ahead of time. I wake up in the middle of the night with my left leg ice cold and I know that the barometer has shifted. I am like one of those old timers that families would gather around, to hear stories from days gone by. A Pa Pa with his cane and tin horn up to his ear, rocking in the chair on the porch hollerin’ “Storm’s a brewin’!” Kids will ask “Tell us about that time you went to get beans out of the cupboard Pa Pa” and I’ll regale the saga of dislocating ribs from picking up a can.
Yet still, I want the rain. I want the snow. We neeeeeeeeed it so much. Pine View, The Great Salt Lake, even rivers in Europe are drying up. I think of this drought so often and the perils for us all that it has turned into an internal pleading. Possibly the closest I get to prayer.
What all this mean is, I will GLADLY be in misery for the glory or precipitation. My tears will just raise the humidity a little.
I was in some kind of ethereal Victorian wonderland dressing room, looking through gowns. I picked a dress and laid it on the bed. When I picked it up another dress appeared, all ghostly, lacey and see through, with a blood red ribbon at the waist. Then this song rang out (my dreams are often musicals) “Ghost Dress! Oh Ghost Dress!” Then lots of discordant notes and humming.
All of sudden the scene shifted to my Dad sitting at the kitchen table and saying loudly “I JUST FARTED THE MOST I’VE EVER FARTED IN MY LIFE!”
I started laughing so hard in the dream I woke myself up laughing. Here’s the kicker, my ribs are dislocated (again) so the pain from laughing was awful. Then the awareness that the pain from laughing in my sleep woke me up made me laugh even more.
I never thought I’d live to see the age of thirty. I can remember lying in my bedroom at night, staring at my Holly Hobbie wallpaper, and counting up the years until I would be thirty. It seemed an impossibility. 2001? How could I survive that long? I was sick so often, in the hospital more often than any kid I knew. How could I ever live long enough to become an adult?
For some reason, I thought reaching 30 meant that you were an adult. At the age of eight, my Mom would have been twenty-eight and my Dad was thirty-two. If I had a question, they had an answer! Ipso facto – that was an adult; having answers. Now, having lived past thirty, I know they were just making it all up as they went along.
Now, here I am, approaching Fifty. A Bonus Round of sorts. I never expected this. I have also never truly felt like an adult. I kept waiting for that “AHA” to happen. I don’t wait for it anymore.
I think we are all making it up as we go along. Some better than others. Some nights I still lie awake, minus the Holly Hobbie wallpaper. I don’t count up the years, I remember them.
I had a few interactions the other day regarding Ehlers-Danlos; a friend and also a family member introduced me through Facebook to others who had either recently been diagnosed or have known for some time. When my cousin mentioned my blog it hit me that I haven’t written here in nearly a year. That is quite the stretch! I have been struggling with writing (nothing much unusual there) and this is a nice little boost to analyze all that distance I have put between myself and talking about how I live with my illnesses on a daily basis.
I have been dealing with illness my entire life. It is that simple. I don’t consider myself a shining star example of “How to Win at Being Sick” or the like, it is just what I know. Everyday.
Okay, here’s an example from yesterday. My ribs had been dislocating the two days before and I could barely stand up straight. I had barely slept from the pain, no position was a good position. Monday morning comes and I have paperwork to deliver to my landlord and meds to pick-up at the pharmacy. Soooo, I get as presentable as I can, hobble out to my car and get on with my errands. I play “Sly and the Family Stone” as loudly as I can because it makes me smile. Any little thing to remind you how fun life is. That’s what you use in your arsenal against pain: sunrises, birds singing, lattes, neighbors singing off-key, corsets, family jokes, potatoes.
Missions Accomplished, I make it back home and that is it for the day. I have reached the pinnacle of my contributions to society. Pain meds, Hulu, the couch, and my snuggly blanket a cousin brought back from their trip to New York, are my safe and cozy evening. Later, ASMR videos will be my solace to ease my mind before sleep. Here’s the other thing, I may spend time “alone” but I am surrounded by friends and family: in mementos, memories, texts, phone calls, Marco Polos, Google Duo, take your pick of social media, and gifts. I often imagine doing a virtual tour of my apartment so I could tell the story behind each warm token. I am spoiled with love and even in my overwhelming times of pain, I never lose sight of that.
Yes, pain has been a constant companion, and so has hope and gratitude. My Mom always says “One day at a time” and when you comprehend that for many, there are no more days, each day is even more precious.
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.
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.
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.
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.
loosestgirlintown 