Dr. Wang recently started me on IV iron infusions and is also considering IV folate for the future.
My blood counts have always been low (I’ve been anemic & deficient in multiple micronutrients for a while), but levels dropped really dramatically in the past two months. My hemoglobin went from 11.0 to 9.6, iron went from 7 to 2, folate dropped from 6.1 to 3.2, ferritin went from 6 to 4, B12 dropped from 319 to 220, etc.
I had my first infusion last week. I was a little bit itchy during and sore after, but otherwise it went really well.
Today, I had my second iron infusion and all I can say is, yikes!
5.5 hours, 2 episodes of anaphylaxis, ice packs head to toe, nonstop coughing & dry heaving for almost an hour, a few mini candy canes, & lots & lots of IV fluids, steroids & Benadryl later, we are finally home!
Last iron infusion was so calm & uneventful…but I’ve been in a weird systemic reaction all week & today my mast cells were just not having it. My hematologist kept coming in & looking at me with stern concern & my poor mother was so nervous…but the nurses were beyond amazing & sooo quick to pick up on things, even before I did! I Spent the whole time laughing & joking with them, making the best of things as I always do…even resorting to communicating through funny faces when anaphylaxis stole my voice.
Life is what you make it, & times like this can either be an ordeal or an adventure. I’m choosing to find joy in the little things & praising God through it all. Circumstances like this are out of our control, so we may as well laugh out loud as we hold on for the ride.. 🙂
Today I had another slew of appointments, one of them being with my urologist at Duke South. It was a pretty uneventful appointment, but I am incredibly frustrated with the state of my urological health…
I have my THIRD infection in two months! The first two were complicated infections with uncommon strains of bacteria, and they really kicked my butt. This most recent culture grew Klebsiella pneumoniae which is a pretty common culprit of UTIs…but it is a difficult bacteria to get rid of nonetheless.
I honestly do not remember what it feels like to not have a UTI! My bladder and kidneys are constantly hurting, with pain ranging from slight soreness to knock-you-to-the-floor sharpness.
My urologist reassured me today that I am doing nothing wrong to cause these problems.
These infections are a result of EDS causing my bladder to be ‘too stretchy’ and dysautonomia affecting nerve signals to my smooth muscles. She also said that prednisone is likely complicating things as it is an immunosuppressant.
As far as managing my condition(s) goes (in this case, taking prophylactic antibiotics and self-cathing), I am doing everything right. I suppose knowing that makes me feel a little better…but in a way, the fact that this is not my fault increases my frustration because there isn’t anything I can do to improve the situation… agh.
On a more positive note, appointments with mom are always an adventure! She’s truly a character, that one. Here’s a video of some post-appointment shenanigans with my partner in crime.. 🙂 Love this crazy woman so much! ❤
If we have to be chronically ill, we should at least be granted a ‘get out of jail free’ card when it comes to colds, stomach viruses, strep, the flu, etc… ugh. Oh well. Feel even crappier than usual, but there’s no use getting upset over it.
Breathe in strength; breathe out bullsh*t” 👌🏼
Oh, my dangling companion
Precious link to my jejunum
Once enemies, now my closest confidant
How I appreciate your friendship
Your quirks, clogs, spills and drips–
I’ve grown to love them all
Tube that makes me normal,
Tube that sets me apart.
Sustainer of life, my ticket to the future
Proudly protruding from my abdomen
Durable through the constant tug-of-war
Between inside and outside
Illness and wellness
Life and death
Warrior, bypassing paralyzed organs
Knight in plastic armour
Surpassing the traitors within
Reminder of a winding journey of ups and downs
Pain and triumph
Sign of strength yet revealer of weakness
Thank you for your service, you beautiful little paradox
(Written for ENG 289…lol)