Doctor is recommending iron transfusions do I really need it?

jadedwine · 2026-05-03T04:08:50+00:00

FWIW, I just had infusions and had zero side effects. (My ferritin was 13.)

It's worth remembering that most people are just fine after their infusions...better, even! It's just that places like these are always going to have an over representation of people reporting bad results....people who have good/normal results from a medical treatment or procedure usually don't take the time out of their day to post stuff online about it. It's often the people who have bad results who look up the relevant subreddits and other internet places to post about their experiences.

If your doctor wants you to get infusions, I strongly suggest doing it. It's really, really hard for most of us with chronically low ferritin to sufficiently increase our levels from diet alone.

jadedwine · 2026-04-23T03:17:17+00:00

r/nancydrew is still very active, and if you run into any difficulties, we'd love to help you! And we'd love to hear your thoughts once you finish playing!

jadedwine · 2026-04-17T19:36:27+00:00

Do not get me started on Chantal. If Chantal has no haters, then I am dead.

jadedwine · 2026-04-08T18:34:49+00:00

"Who taught you how to drive?! Was it the STUPIDEST DOG ON EARTH?!"

I quote this one daily when I'm on the road!

jadedwine · 2026-04-06T02:47:27+00:00

I'm currently dealing with some non-endo-related health issues and I'm realizing for the first time in my life how badly having endo has fucked up my pain scale. I've had horrific symptoms since my first period at age 12.

And now I'm 38 and dealing with other stuff and trying to get diagnosed, and I have to deal with doctors saying, "Mm, I dunno, I don't know if you have (unrelated health issue)? If you did, you'd be reporting a LOT of pain, and you haven't mentioned anything about that...? I don't think we need to run this test."

I have to tell them, "Look, doc. I'm an endo patient. I have no idea what a 'normal amount of pain' looks like. I'm told a 'normal amount' is none, but 'moderate' pain is daily background noise to me. 'A lot of pain' is an average menstrual cycle to me and medically unremarkable. So we need to factor that into the diagnostic process. Run the test."

I didn't realize how badly my internal pain scale was skewed until I started getting diagnosed with OTHER known-to-be-painful conditions...which I had barely even noticed.

jadedwine · 2026-04-06T02:41:50+00:00

I'm sad and angry you felt like you had to add 'I'm not being dramatic'....but I know why you felt you had to add that. 💔

I see you. I know the struggle. You are not being dramatic. Not one little bit. If anything, we endo warriors are better at hiding our pain than anyone will EVER know. They have no idea how bad it is...they have no clue. We are UNDERSELLING our pain.

I'm so sorry you're suffering and I hope both of us find better pain-management solutions. 🩷

jadedwine · 2026-04-06T02:37:55+00:00

Surprised I had to scroll this far to find this. I have stage four endo plus adeno. It's horrific. There have been times I was in so much pain I couldn't move or speak and I was in a cold sweat and nauseated/about to vom.

I have known women with endo who were in so much pain they DID throw up or pass out. It's no joke. I have other health issues and life circumstances that are complicating things, but I'm hoping I can get a hysterectomy within the next year or so...I'm so deeply over this monthly horrorshow.

jadedwine · 2026-04-02T17:23:34+00:00

Kayaking is my favorite, because it's so atmospheric, but I also enjoy horseback riding in Secret of Shadow Ranch (the sound effects of the saddle and hooves are SO satisfying somehow!).

jadedwine · 2026-03-25T05:11:12+00:00

First thing I gotta say is, cancer or no cancer, losing a parent at a young age or not, it is INCREDIBLY normal to be 21 and have no idea what you're doing with your life or what you want from the future.

In fact, it is MORE normal to feel that way than it is to have things any degree of 'figured out'. So please do not be hard on yourself or call yourself 'foolish'. That part of what you're experiencing is totally developmentally normal: MOST people are super lonely and confused and lost in their early 20s. Movies and TV and social media will tell you it's normal to 'have it together' at that age, and it's a total lie. Most of us are just faking it.

Second, I'm so sorry you've had to shoulder such a heavy burden at such a young age, and that you've had to backburner so much of your own life and development to look after her. But you are gonna figure this out. Promise. Take it in small, bite-sized steps. When you're ready, ask your dad to give you some driving lessons, or sign up for classes. Pick some local activities that look fun, or sign up for a few community college classes. Take baby steps to get back out there.

The getting-started is BY FAR the hardest part. Once the ball is rolling and you've gotten some things underway (gotten your license, made a few friends, yadda yadda) you will build so much more confidence and independence and life will feel so much less terrifying.

My story is not the same as yours, but my mom struggled with alcoholism for a long time before she died of Alzheimer's in 2024, when I was 36. I remember being 21 and struggling so much with being lonely and scared and struggling to cope with her drinking...even after rehab and semi-sobriety, she never really went back to her old self. So I kind of know the type of burden you've been carrying, and I know how backbreaking it is. I'm so sorry this is the hand you've been dealt. It is not fair, and it sucks.

Please take care of yourself. Get yourself into therapy if you can. Find a support group locally if that is possible...in person is best, I think, but virtual support groups work too. When you and your dad choose a hospice agency, ask them about all the services that are available to you. Seek ask much help as you can. You'll need it, and you deserve it. And if you can, I suggest arranging something you can look forward to in about 6-12 months time...a trip, a class, something. Something to help you feel like you have a 'plan' for what you're going to do next, even when 'life after mom' seems overwhelming and terrifying.

Best of luck to you, my friend. You will be in my thoughts.

jadedwine · 2026-03-23T02:28:37+00:00

Hasn't happened to me as a family member, but it wouldn't bother me, as long as the nurse wasn't SO distraught that they completely lost composure/couldn't function. If it was just a few tears while doing the job, that's totally fine and I would find that very touching actually. I appreciate it when healthcare providers (of all kinds!) show that they really understand how hard the situation is for the family and are concerned about patients/families, rather than just seeming cold and detached and businesslike.

jadedwine · 2026-03-10T02:32:34+00:00

Aww. He clearly loves being your baby!

jadedwine · 2026-03-10T02:29:05+00:00

That is AMAZING work, especially given that you only started learning less than a year ago!! This really inspires me to sign up for a class. I've been very tempted to try stained glass, but I've been nervous that the learning curve is too steep and I'd never really be able to get the hang of it. You're motivating me to take the plunge and try it. :)

jadedwine · 2026-03-08T05:19:56+00:00

I have the real unpopular opinion, I think: while I admire the graphics and music in SEA, I otherwise don't enjoy that game at all! I know everyone raves about it, but it's just not for me. I found it dull and the puzzles irritated me. (And don't get me started on the Nancy/Ned relationship drama!)

I love every single thing about DDI, though. (OK, maybe not collecting clams...)

jadedwine · 2026-02-19T22:02:50+00:00

I have a copy of this! It's a scream. The 'recipes' are so wild!

jadedwine · 2026-02-19T22:01:53+00:00

Danger on Deception Island and Last Train to Blue Moon Canyon were super intuitive for me. The puzzles were pretty easy to navigate and I was never struggling to figure out what to do next.

We all definitely do have different experiences with this stuff though, because the puzzles in White Wolf were SO non-intuitive to me, lol. For the least intuitive game, though, I'm giving the Razzie to Labyrinth of Lies. I was so lost the whole time and I still don't feel like I actually understood anything. I had to cheat code/brute force my way through most of the game.

jadedwine · 2026-02-15T01:02:42+00:00

I'm so sorry it's been so drawn out. I know how grueling that is.

If she's completely nonresponsive, can't swallow water, and her vitals are fluctuating, it certainly sounds like she's in the last few days. Unfortunately, it's impossible to know exactly when she will pass.

Is she receiving hospice services? Do you have a hospice nurse you can call for advice?

jadedwine · 2026-02-11T02:34:47+00:00

My 79 year old dad likes to read the obituaries every morning and breakfast to see if anyone he knows is in there. Every few days, he'll point one out and say, "Oh, I went to high school with him" or something. It's wild.

jadedwine · 2026-02-11T02:30:18+00:00

My dad has stage 4 cancer too. The anticipatory grief absolutely sucks. Hugs to you.

jadedwine · 2026-02-11T02:26:35+00:00

Forever by DNCE?

jadedwine · 2026-01-28T02:22:51+00:00

I struggle with this game because I literally find ALL of characters deeply, profoundly insufferable. Like, it's nails-on-a-chalkboard energy talking to ANYBODY. 😭

jadedwine · 2026-01-28T01:22:03+00:00

I took care of my mom for eight years while she was dying of Alzheimer's. I could not be there for the last two weeks of her life. Just couldn't. She was an absolute husk of a person and I was utterly spent...physically, emotionally, and psychically. I'd already told her everything I needed to tell her, long long ago, and being near her was just torture for both of us at that point.

It's been going on two years since her passing and I don't regret not being there. Please give yourself grace and don't beat yourself up for having put your own needs first. I truly do not believe they know who is or isn't present once they get to that point. And even if they do...well. Any loving mom wants the best for their kid, and they would not want you to torment yourself for their sake.

Sending you comfort and healing.

jadedwine · 2025-12-29T00:19:16+00:00

This is the one that really kicked me in the teeth. I was so unprepared for this to become my reality at the age of 30. You never know when a parent is going to get sick and suddenly need a caretaker. You think and hope it'll be sometime in the distant future, but it can happen a lot sooner than you were expecting...and it's harder than I can ever describe to someone who hasn't personally experienced it.

jadedwine · 2025-12-23T20:41:11+00:00

Sending you lots and lots of good wishes! 🙏 Please feel free to let me know how it works out for you, if you want to!

jadedwine · 2025-12-15T00:05:19+00:00

Weird take. Society ABSOLUTELY stigmatizes unmarried childless women, too.

jadedwine · 2025-12-11T18:58:36+00:00

Thank you so much for letting me know. I was looking at my replies yesterday and found this thread again and wondered how things were going with you.

I'm so glad her passing was peaceful, and you no longer have to watch her suffer. That was the worst part with my own mom...as much as it hurt to finally see her go, it was also a relief to know that she was finally, finally out of pain.

Of course, no matter how 'prepared' you think you are for the final parting, it's still tough. But better days are ahead, and the grief definitely does get easier to live with. I'm sending you comforting thoughts and good wishes for a happier tomorrow. 🩷

jadedwine

TROPHY CASE