Sunday, January 18, 2009

q and a

1. What were the circumstances that led to your initial diagnosis? What is your story? I was working as a waitress and started feeling tired all the time, then i started feel thirsty, then i went the bathroom almost every hour, i had constant yeast infections, i lost a lot of weight but didn't notice because i was exercising, and i had mrsa before being diagnosed. I didn't know anything was wrong with me because i thought this normal feeling because of all he hard work i was doing as a waitress (long days, stress). I went to my local Urgent care and told them my friend and I though i might have diabetes, they tested my sugar, gave me some pills, and that was that. I didn't take the pills because i really didn't know the seriousness of diabetes. Couple of days later i started feeling really sluggish, my mouth was dry to the point it was peeling, my breathing was shallow, and i slept all day. I didn't go to the doc because i didn't have insurance, my friends convinced me to go to the ER. I was to weak to argue. I think i passed out a couple times and when i woke up i was laying in a hospital bed hooked to IV's. They said i almost went into DKA and could have died if i hadn't come sooner.

2. How did you feel at first? Scared? Guilty? Ashamed? I felt sick for a long while. I was scared of eating and waring myself out. I didn't feel ashamed because i didn't do anything to cause my type 1 diabetes. It was kind of exciting at first, in a weird way, because it was an answer to why i was sick and there was a solution to fixing it! But i didn't realize how hard it would be.

3. What kind of education or instructions were you given once you were diagnosed with Type 1 DM and by whom? (Nurse, Dietitian, Doctor?) A Diabetes Educator visted me while i was in the hospital and gave me some literature. She told me that I would have to take shots, count my carbs, and number one starting rule was to cut cola. She said i could call her anytime. I think i was supposed to fellow up with my er doc but he had no openings. So i really didn't have any doctor guidance, just the diabetes educator.

4. What is your daily routine (monitoring, shots, etc) from the time you wake up to the time you go to sleep? I'm supposed to check my sugar before and after meals. Take three shots of humalog a day and a shot of Lantus at night. In between i monitor how i feel, and try to avoid hypoglycemia with snacks or juice (personally). I have to write down my carbs, the amount of insulin taken, and my sugars before and after meals. I try to every 3-4 hours, amongst my 3 meals and 3 snacks.

5. What are some situations that require you to change this routine? (Going out for drinks, traveling, work schedule, etc.) Since i work third shift I sometimes have to wake up early or stay up later from work so i can run errands for things open during the day. Sometimes i don't want to take my medicine and that changes everything and leads to me not testing or taking the right amount of insulin, this can effect me for days to months that i do this. Sometimes at work i have to postpone eating because my break is different, i could fight this if i wanted. But i hate to have my diabetes be a inconvenience to my work ethic.

6. What are you concerned most about regarding your health in the future? Losing eyesight, amputated leg, the usual horrors but these seem so far away that i don't really let it sink in my head that this could happen, could be because i'm still a new diabetic and I'm young (my body fights it better now). I worry about yeast infections and urinary tract infections.

7. How has living with Type 1 DM impacted your relationships with others (romantically, friendship, family, children, etc). Hasn't really impacted it in a bad way. It's something you either they have to accepct or they don't and you move on. But sometimes when you felling bad you might act out against loved ones. They might not have diabetes but they have somebody who has it, and that can make it just as hard for them to see you suffer.

8. How has insurance (and dealing with insurance companies) impacted your life, health and general outlook? I don't have insurance. The only insurance i had didn't include diabetes because i was "pre existing."

9. Anything else you'd like to share.
things i notice: misconceptions from others about what you can and cannot do (or eat). The doctors i've encountered don't have time for diabetes, and you will waste alot of money till you find a good one. Being diabetic is expensive, especially if you don't have insurance and have to pay hospital bills out of pocket. Because of that i'm sure alot of people avoid going to the doc or er, i do. Alot of diabetics deal with denial, guilt, and anger. Alot of new diabetics are told the basics and then let out in the real world with no raft. I try my best to do pay and get help for my supplies but i always find that bills not related to diabetes go ahead of everything else. I can't afford to be broke because i need good food, good medicine, and a good job to pay for it, But it's a bit like the snake eating itself when it comes to all that. Without food i can't take my medcine, without medicine i can't take shots for my food, without insurance i can't afford to see the doctor or get the supplies i need, without money i can't do anything.

Thursday, January 1, 2009

dealing with diabetes in healthcare system

Submitted to these people who never emailed me back. Sorry i don't have cancer. But hey i do prolong death as much as possible.
My dealings with money and healthcare

I have been diagnosed with diabetes for one year. I knew something was wrong with me for a while but since I had no insurance, I didn't go to the doctor. The formula: hospital + doctor equaled to much for me to contemplate. Instead I went to Urgent Care, paid 25 bucks, the nurse tested my sugar, and my sugar was too high (damn you mountain dew!). Instead of recommending a doctor she prescribed me some pills. I came home and forgot about the little pills. Couple days later I had trouble sleeping, was thirsty, and couldn't walk around too much. The Hospital didn't register in my mind because I had no insurance or money. Fortunately I did go, they fixed me up, gave me the basics, I met the hospitals sliding scale papers and my 20,000 dollars bill was covered. (For some reason they kept me in ICU the whole time, which is why the bills is so high).

It's been a year and I have experienced things I never wanted or thought I’d worry about. I originally had help through the Diabetes Educator at my hospital, who said that the American Diabetes As. would help me but through her. I would regularly call her up to have her clear my medicine. There was numerous times when I would go to the pharmacy and she wouldn't have called it in it yet. I would be on the edge of tears when they would tell me the price of my medicine, then I would ask them to check to see if she cleared it, they would shake there heads and wait for me to make the next move. Feeling pitiful and stupid, I walked away. I had bigger bills to pay to be able to keep my standard of living; I couldn't afford my most basic need.

Obviously diabetes is last on the list for bills for me. I stopped going to my diabetes educator when she started telling me she had too many people wanting free medicine. (and when she started being cold towards me) I felt ashamed. As if I was some drugy hanging around his suppliers house just to see if they would give me a fix. There are many times I wanted to tell them: doctors, hospitals, billing, and pharmacy or people in general, that the only time they would care is if I was dying. It's as if I'm being punished, money wise, for wanting to take care of myself so that I don't end up in the hospital again.

My diabetes educator/supplier urged me to find a job with insurance, but being young and wanting to find a job I liked, got in the way. I don't attend or look forward to college anymore for the mere fact that I'm afraid of not being able to be financially "diabetic" But the worse feeling of all is worrying about the cost of diabetes. Worrying about the right insurance while you worry about even making it through your day at work. Looking for the cheapest brands in strips, meters, and even doctors. It seems like when you want to do right for herself you have cut corners to survive financially. I can’t afford to be broke in this economy, dammit I’m diabetic.

I recently went to the doctor and was stunned to find out I had to pay half up front or I wouldn't be able to see her. I already owed money before and assumed they would add it to my total, so I felt rejected. After the appointment I felt like I wasted my money, because the women told me 3 things that helped, equally out to 75 bucks, and she showed no interest in my sugar logs and complaints. I guess you have to spend some money on bad doctors before you get the right one. But how long will my diabetes suffer from having to wait for somebody to listen to me?

Why don't I have insurance? The same reason nobody else does: either the job won't give you enough hours to cover it or your diabetes won't be covered because you have been labeled "pre-existing." I'm to the point where I might actually consider denying insurance based on the fact that Lilly and Sanofo Aventis will cut my free medicine if I have insurance. So if I'm getting insurance, it better me damn good and right away. (update: should have go the damn insurance through my company, now I might get laid off. Fuck cobra)

In conclusion I feel that in able to be financially diabetic, you need to be able to cut corners. It's equivalent to the snake eating it's self. Meaning, I depend on medicine and food but what's the point in buying medicine if you can't buy food? Or having food but no medicine. This snake seems to reflect the rest of my life and it’s choices, from being a regular joe that works and pays his bills to being diabetic jane who has no energy to work as she stresses over bills, juggles being healthy, as she cuts corners in the diabetic department (doctors, meters, needles, meds). With all this weighing on our minds you can’t help but think you’re being punished for being diabetic.

Who really wins in the end, them? Or Us? Or can we outwit them in the end?