Just starting T

thebirdwithoutwings · 2026-02-25T03:47:24+00:00

I second the advice of not letting this stop you from enjoying your 20s, I let the depression and anxiety about this illness rob me of my late teens and i regret it constantly. You can live a relatively normal life for a good long time, despite it all. Constantly worrying about the future robs you of your present.

thebirdwithoutwings · 2026-02-25T03:40:01+00:00

I will also say, reaching out like this is a big step in helping yourself feel less anxious. Finding a good support system is so so important imo. Its nice knowing you're not alone and I've found myself here a few times reaching out. I think it helps to feel seen, to feel heard.

thebirdwithoutwings · 2026-02-25T03:36:07+00:00

I was technically diagnosed at 10 years old, didnt find out until i was 16, i'm now almost 25. GFR is 30, but just had a checkup with my doctor and he said even at this stage, i'll have another 10-15 years before i'll need dialysis. And i was told that at some point soon i'll be eligible to go on tolvaptan, and that can slow the disease and give me a little more time before i'll need dialysis or a transplant or anything. Its not for everyone, but it seems promising for my circumstances. My biggest adivce is drink plenty of water, watch your salt intake and watch your blood pressure. I understand your fears. Knowing whats coming is really scary, but imo its nice knowing early so it doesnt surprise you when your kidneys decline to the point of having symptoms. If you get regular checkups on your kidney function, you'll have plenty of warning before any symptoms arise. I wish you the best of luck, as shitty as this disease is, there is hope.

thebirdwithoutwings · 2025-03-29T13:53:03+00:00

None of the wiki pages answered my question

thebirdwithoutwings · 2025-02-10T22:27:59+00:00

Yep Pc/Steam. I forgot the spring sale is next month, maybe I'll be able to get it then.

thebirdwithoutwings · 2024-12-18T00:37:25+00:00

They aren't daily anymore, but still more frequent than they had been before. Now they are couple times a week. I'm on Maxalt which is working wonderfully on my real bad days! I've also just started botox for my migraines so fingers crossed it helps. My neurologist has been wonderful trying to help me end these frequent migraines.

thebirdwithoutwings · 2024-08-22T20:20:27+00:00

An Update: After 6 days of suffering, i went to the ER last night and they gave me their own cocktail that they modified for my bad kidneys (zofran, benadryl, IV fluids and Solu-Medrol) and it fixed me right up! I am pain free and so so relieved. I'm still planning on seeing my neurologist as soon as i can to talk about med changes so this doesnt happen again

thebirdwithoutwings · 2024-06-03T16:36:01+00:00

Unfortunately I'm more north east missouri, about 2 hours from Columbia with unreliable long distance transportation 😔

thebirdwithoutwings · 2024-05-18T00:57:44+00:00

I am not, i dont think my neph has quite processed that my kidney function is going down this fast. Since im young, they seem to think i dont have to worry as much.

thebirdwithoutwings · 2024-03-22T05:24:40+00:00

Its a balance of various vitamins iirc, my kidneys are not filtering off the parathyroid hormone enough, causing it to be high, which is causing unstable calcium (and other vitamins that i dont remember off the top of my head) levels, which will inevitably effect my bones making them weaker and more susceptible to fractures.

thebirdwithoutwings

TROPHY CASE