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.
loosestgirlintown 