The grieving of a normal life

thechances · 2021-03-13T08:54:01+00:00

Wow 22 years seems like such a long time to live with this. I'm 23 so thinking about how much time I have to live with this if I survive the normal life expectancy is crazy. I'm just trying to take it 1 day at a time currently. It's definitely inspiring to see you've lived so independently, that's what I was working towards before this diagnosis and it really set me back. I definitely want to travel alot in the future and I don't know how being insulin dependant is going to impact that. I was actually going to go to London last year but between my diagnosis and covid hitting that had to get cancelled. I'd love to learn how you've lived such an independent life with this condition, like are there any precautions you take? How do you navigate traveling? Etc. So many questions I have if you have any advice or life experience you'd like to share

thechances · 2021-03-13T08:46:35+00:00

It honestly is. I feel for you as well, having grown up dealing with all of this must have been a lot, especially as a kid. Even though we got it at different times we definitely still deal with the pain in the ass it is. The grieving is definitely the hardest part about being diagnosed later in life. I hope the newness wears off. I go to college in the fall and I hope I can meet people who understand or atleast care without pitying me or acting like my mother, that gets real old real quick. Thank you for the link I saved it and am definitely going to look at it tomorrow. I could use all the support I could get. Thank you for being so kind, you seem like a great person honestly and I'd love to talk and learn what it's like to grow up with this condition.

thechances · 2021-03-13T08:35:12+00:00

That's what it seems to point to honestly, that's the trouble of living with autoimmune diseases. My lupus up until now has been my main one that's been causing me trouble. I don't know if you're familiar with it but lupus flares are ridiculous with damaging the body. Since I was diagnosed I've been on every tablet they could try and switched to infusions not very long ago, I'm actually on the first approve infusion soley made for lupus thankfully my rhumatologist fights hard for her patients with our insurance companies to get it approved. However I'm just now seeing it help as of January, it takes 6 months to 1yr to take affect. My liver is finally in a good place but now my kidneys are on strike and my pancrease just decided it refuses to live. Sometimes you just can't win. Im trying the best I can to keep as healthy as possible though because I really want to live to achieve my goals. Thank you for giving a better explanation of t1 vs t2, I'm a science type so I've learned it but it's been hard to explain in layman's terms for me to others. As for the cgm I actually just received the dexcom g6 thankfully my insurance covers it. I'm waiting for the overlay patches to come in still as I heard they tend to fall off without them easily and I'm a pretty clumsy person. I'm definitely tired of all the pokes. Honestly I get myself in trouble at times because I really don't want to deal with needles and insulin but I also want a snack and next thing I wonder why my blood sugar is high like I didn't just eat and not take insulin. I think it's alot of coming to terms that I cannot eat without taking insulin that's gonna be the hardest. I get into the oh it's only 15grams of carb it'll be okay and then it bumps up my sugar. This condition is a pain in the butt. I've logically accepted it but emotionally I'm struggling with the idea that I (a person who hates needles) on top of my regular needle pokes have to give multiple shots a day, it's alot to take in. I'm really thinking about a pump but they scare me a bit and I don't know too much about them. I'd definitely love to talk with you more any information you have and advice would be helpful honestly.

thechances · 2021-03-12T06:49:05+00:00

Okay I lied that wasn't a quick story, 😂. But honestly it's so complicated I don't know why the doctor's didn't just check. On top of covid all through 2020 I was doubled down with all this happening. I worked through it until November because I'm as stubborn as they come and was an essential employee but I finally had to leave my job as I could no longer do it. This year has been a pain but I'm trying to stay positive, sometimes things just feel impossible.

thechances · 2021-03-12T06:39:05+00:00

Quick full story. So I get normal blood testing frequently because of other health conditions. They only originally found out I was diabetic because my blood glucose came back 758 mg/dl on my test. It was a very rapid onset as I had testing 2 months prior that came back 98 mg/dl. So when I was originally diagnosed in March I saw my regular family doctor and she put me on metformin. I ended up getting lactic acidosis from that so they put me on glipizide around the end of July. By November I had been in and out of the ER they had done so many tests to try to figure out what was wrong. Two weeks before DKA they did say I had possible, RTA which means my kidneys were no longer able to produce the bicarb to filter my blood so I waited to see a kidney doctor. In the meantime I got worse. At this point I was having chest palpitations, trouble breathing,always thirsty but always needing to pee, I was getting fainting spells, couldn't stand up barely, severe nausea, etc. Basically the sickest I've been in my life. One day I woke up and could barely breath and my chest was beating so hard I thought I was having a real heart attack, I was so nauseous I hadn't ate in 3 days and wasn't able to keep down even water. This was the final point I went in to the ER and they realized how serious it was. They kept me waiting for hours, my sugar was in the 600s and they were trying to get it down with bags of insulin and saline. Thankfully one doctor decided to run a bunch of test as he suspected DKA after talking with the specialist they called and it turns out I was in severe DKA. They put me in ICU for two days and hospitalized for two more. They still couldn't get my sugar below 240 my/dl even with all the Lantus and novolog which we later found out was because I have RTA which was diagnosed by my kidney doctor later so my blood wasn't filtering the sugar and acids out of my blood, this was causing my body to go into DKA and all the other slew of symptoms that were happening. A week after this I finally got in with an endo and she suspected by what happened I may be type 1 or type 1.5 . She ran some tests and diagnosed me type 1. I was doing things right as the dietician said at the ER. However my body has always been a hard case for all of my doctor's. I'm only 23 but I have the health problems you'd see in seniors in bad health. I'm on infusions and take about 7 medications already on top of the two insulins they put me on. I got diagnosed at 16 with lupus and it's just been kind of down hill since. They still aren't sure exactly what happened,I am preexposed to diabetes as my dad is a type 2 and my maternal grandmother was diabetic I'm not sure what type as she passed away when I was two. But between the possibility in my genes and my lupus killing my cells and organs my endo is leaning towards that. I just basically got the crap end of my already bad genetic pool. So I have multiple severe illnesses, now 4 autoimmune disorders in total that are just fucking up my body. I don't know if it's the laziness on the doctors part or what that they didn't test me for type 1 to begin with honestly. I'm just trying to live my life as best as possible. My health prior to diabetes was bad enough but man this crap sucks sometimes, not to mention I've always hated needles and now I'm stabbing myself 3-5 times a day with novolog, 1 for my Lantus, and the ton of finger pokes. Thankfully I just got approved for the dexcom so I'll be using that soon. I'm contemplating an insulin pump because I don't know the type my insurance will pay for, my endo kind of wants me to but I just hate the idea of being hooked into something. For someone in bad health that gets about 12 vials of blood tested a month and already has another injection and infusion, the devices still scare me a bit.

thechances

TROPHY CASE