#chronic anemia

[thebibliosphere]

Had my hematology appointment today:

Hematologist was very lovely, competent and thorough.

He took one look at the dose of iron I’m on right now and almost tripled it. So we’ll see how my stomach handles that 😬 (nobody come near me with any magnets /jk)

If it’s untenable he’s not against infusions, he’s just extremely hesitant because of my history of idiopathic anaphylaxis and even people without mast cell issues have anaphylactic reactions to iron infusions, so he’s being cautious and wants to see how far we can raise my levels via oral supplements provided it doesn’t completely wreck my GI tract.

If it does we’ll revisit and do what we can to manage it.

Current working theory about why I keep depleting so quickly is because of all the damage MCAS did to my insides when it was running untreated, so I’m not absorbing or holding onto anything and my body depleted what little stores I had trying to keep me alive, and then because of my ongoing nutritional issues because of MCAS, I’ve just never been able to bounce back and recover as my body continues trying to repair itself.

As for why my deficiencies are only being found when I go into crisis: that’s just doctors not knowing how to read blood results properly and relying on the “normal” markers too much.

Apparently he didn’t even need to look at my ferritin numbers to know I was deficient. He was able to tell at a glance from my iron panel based on the numbers, even though those numbers were “within normal range.”

(So to all the medical people who follow me, maybe keep that in mind if you have patients who keep testing “normal” but are symptomatic. Maybe send them to hematology if you can.)

He’s in agreement that either way this is likely a source of my worsening migraines. He’s unsurprised neurology didn’t have a clue and dismissed it. Apparently when you go under 50 things just don’t work so good.

So to my chronic migraine friends, get your ferritin levels checked and try to get them over 50 at a minimum.

We’re aiming to try and get mine up to 100 over the next year. Wish me luck.

I’m going to go back to resting. I’m tired. But hopefully not for much longer 🤞

[cpunkwitch]

I had to leave the hospital without answers from my blood test

They were so backed up they kept moving people around on the list that the flow clinic they were supposed to send me to was about to close when I left so I gave up

I'll have to schedule time in a clinic elsewhere but holy fuck I hate hospitals and the er.

They were in such a mess they had a man with a stroke waiting 9 hours before he gave up and went home with his family, a diabetic who's doctor sent him there for a heart issue with his medication too. And a girl with her arm in a cast who got there after the 3 of us waited only an hour, went through the flow clinic and left. A check up on a broken arm in a cast is not more important than a man who had a stroke or a diabetic who's insulin may be killing his heart or an autoimmune blood disorder.

I had to leave cuz no way in hell was I staying overnight till the clinic opened up again in the morning when I needed rest and have work the day after (today)

Thanks to my sister continuously waking me up 12-1 or after, I didnt get much sleep or at least not any quality sleep like I needed so now I'm going to work irritated and tired and my back is still shitty so standing for 6 hours is gonna be an even worse pain in the ass

I should have just told the paramedics to take me home from school instead of to the hospital

Missed a full day of class and didnt get shit done about my anemia I hate my body and I'm pissed off about all of it

Even the nurse who took the iv our of my arm admitted things in the er were a chaotic mess and apologized to everyone who left

I feel bad for her to have been so scrambled like that and she was nice and gentle when taking out the iv

I think even several parents there to get their very young children seen had to leave.

[delta-hexagon]

googling "is it normal to constantly be so tired i feel like exploding into shrapnel" at 1 am on a thursday

[thattheater-kid]

me when I told my friend I can’t donate blood because I have a blood disorder that keeps me from donating (thalassemia, it’s not severe but I already don’t have what my body needs, even being on my period is tough) and this girl said to me “you’re lucky, I’m always getting asked to donate blood because I’m a universal donor.”

like HUH?? what kind of FUCKERY? who says that??

[gornwen]

Morning run. Morning sunshine.

I headed out this morning thinking I would just do my little 1.5 mile commute run, but the weather was a little too perfect and I've been trying to push myself to build that stamina back up, and that extra 10ish isn't that much... so I made a mid-run decision (about when I took this photo) to run for full 30 minutes. Definitely worth it, especially relearning that I can in fact run for a half hour straight. So much of running is mental, I know that. But it's so easy to get caught up in those thoughts.

I run to prove to myself that I can do hard things. And keep my hemoglobin above 12.

The Deets

2.14 miles

30:03 minutes

14:03 minutes per mile

Crazy splits: 15:03 for my first mile and 13:21 for the second. I guess I really did need that second mile to wake up

No doves

[sorchathered]

Happy Monday from me as I wait around for my first iron infusion treatment, hopefully this means I’m on the path to feeling normal after years of this mess.

[roguetatertot]

I’ve been put on iron pills due to chronic anemia (which my doctor described as “not life threatening, but serious”) and hOLY CRAP THEY HURT THE TUMMY. And the taste from burping is just.....wow—like biting into an ingot or something.

I’ve read to drink a glass of orange juice to help absorb the iron, but does anyone out there have any other tips or suggestions to this whole process? I’m making sure to take it by itself, and waiting a full hour before eating or drinking anything else (especially coffee). I’ve also been put on ranitidine (Zantac) antacid, but I don’t take that until after my iron.

And the taste.....please tell me there’s something out there that can help with that, aside from chewing gum constantly. Blech. 

[chronic-confessions]

Confession #2,980

My health took a downwards spiral about a year ago and since then I’ve been diagnosed with hypothyroidism, chronic migraines, and chronic anemia. Through the struggles of the past year, to spoonie community has been a real comfort. I identify as a spoonie, but I wonder if I should stop because I don’t identify as disabled. My conditions are frequently disabling, but I don’t know if it’s enough to call myself disabled. I can’t tell if I’m interloping in a space that isn’t mine and it’s scary.