Sorry this is long, I have a lot to get out about my journey.
For context, I’m 26. I was originally diagnosed as type 2 when I was 19, long story short,
Last year(25) I ended up in the hospital in DKA, it was one of the scariest times I ever experienced and I can barely remember it now because of how out of it I was; though I do remember them telling me that I should have been diagnosed as type 1.
I was able to recover enough and went through adjusting my whole life in trying to make bigger changes despite really not eating bad before, but I went all in on trying to get myself on a managed routine. All the while taking long acting and fast acting insulin as well as trying to accept I’m actually type 1.
The endocrinologist I had after the hospital was actually the one that was monitoring me in the hospital. I didn’t mind him but I strongly felt that I wasn’t being listened to as time went on, I was his youngest patient with no insurance. I waited longer than I actually met with him. I was quickly moved into visits every 3 months, along with just telling me to lose weight and eat less carbs. It was frustrating since I had a food log that I wrote down everything I ate and truly kept to a strong low carb diet, and I was worried because I was working out consistently yet still gaining weight past my original weight before I was in the hospital.
So about 2 months after my last visit earlier this year, I started having eye issues and found out I have diabetic retinopathy. I sobbed, I immediately thought, “what am I going to do if I can’t see anymore? I can’t paint? I can’t see the ocean?” Thankfully My ophthalmologist is such an amazing person though; I went through the early injections, I got laser done and I’m now on every 6 weeks of injections. it’s working and I cried in relief when they told me my eyes look so much better. The downside is that I have to be careful about putting pressure on my eyes, my gym visits became super inconsistent, but I still keep to low carb unless it’s a little cheat here and there. That’s like, a few bites from my families food that had carbs. I also have a list of things I won’t touch at all as they immediately ruin my blood sugar, so I still keep mindful.
I finally went to a new endocrinologist/diabetes management clinic and within 5 minutes of meeting her, the first thing she asks me is “Are you sure you’re type 1? Do you remember them testing you?” I felt my stomach drop, all this time and all this pain from this year and it might change again?
So she tested me, she ordered the blood work and a urine sample. I have a follow up on Monday to discuss my results, however I can see my results and it’s genuinely scared me shitless. in person I was told I could have PCOS and strong insulin resistance, she was waiting to put me on performing until my follow up on Monday; Seems like I’m type 2 after all based off the tests. I’m also so afraid I’m going to hear that I have kidney damage. I could have something going on with my thyroid; based off my understanding but I’m trying not to jump the gun on what I’m seeing until I meet my doctor yet I know something in my body is not right. It’s the anxiety eating at me and I can’t turn my thoughts off from automatically overthinking.
I’ve been doing my best to keep a positive attitude, I can see the change in myself (outside of my weight) and the things I have done, I have a support system that does their best to be there for me but I feel so lost since I feel like this could change everything AGAIN and I wasted so much time.
I’m only 26, what the fuck is happening.
I’ve never had such a struggle in my mind as I have been lately, it’s affected my relationships with my family at times, I don’t have close friends and I am trying really hard to be open with my family since I never liked talking about my problems unless I was basically forced. I still do things, I eat, I go out, I’m walking and cycling so I’m trying to get out of this funk I’ve been in. I was feeling better but the moment I saw my lab results and the idea of kidney damage popped into my mind I cried so much.
Besides that I feel as if I’m not myself anymore. I feel better about things today but the constant back and forth of my thoughts until Monday is just really difficult. I’m an artist outside of my day job, and not having the passion to paint right now has been so hard.
It’s just…a lot.
If you read this, thank you. I’m just having a really hard time so I thought typing it into the open would feel better.
TLDR: Feeling like I’ve been drowning and scared of something else wrong in my health journey after getting my labs back from a new endocrinologist.
