I was 10 when it all started. The doctors weren't entirely sure why I developed diabetes, as I'm the first in my family. No history at all of type 1 or 2 in the family tree. When I was younger, I likened myself to an X-Man...except my mutation meant I had to be more careful about my food choices and needed to take shots. I had thought that type one was triggered in the same way as type 2, and at my time of diagnosis I was an overweight 4th grader.
For a very long time I blamed myself for the illness, and when I finally talked to my endocrinologist about it, he told me the most likely scenario is I was somehow infected by an unspecified virus that triggered the formation of antibodies to attract leukocytes to my beta-cells and kill them. There's nothing I could've done differently to prevent the disease. The month before I was diagnosed I felt sluggish, and I was drinking copious amounts of water (as well as urinating in a similar capacity). I was asking to use the restroom so much my teacher denied me more than two trips in a day, and said unless I had a bladder infection I couldn't go more than that. I broke down and lied about it, and luckily she didn't ask for a doctor's note.
My weight was dropping slightly, and I was more and more tired as the month dragged on. Eventually I went to the doctor to get tested for a bladder infection, and they found glucose in my urine. I got blood testing done, and luckily, my glucose had only risen to 410 when I was finally diagnosed, as I still had some pancreatic function at the time. I got things under control, and by the time I was 13 I had a Disetronic insulin pump. My A1C was exactly 7, which was right where the doctors said I should be (at the time...now, ideal is less than 7). I lost the pump when I was 15. It was supposed to be water resistant to a certain depth (30 feet, I think), and I went swimming with it on during band camp. Water got in and shorted it out, causing it to deliver a constant stream of insulin so large I could hear the pump whirring along. I got so delirious from the low blood sugar I forgot I could take it off of my body. I ended up going home that day, despite there being 4 more days of camp, as they couldn't handle what would happen if my spare malfunctioned too.
When I started using the spare, the batteries would go dead within a few hours. I'd order new ones, complaining to the manufacturer about them, and all of the new batteries would only last for a day at most. I had to go back onto shots because Disetronic turned out to be a very bad company for diabetic care, and they ended up recalling all of their products and going bankrupt. I'm very brittle and have a history of psychiatric problems, so depending on my mood I would take care of myself better or worse, meaning my glucose levels were akin to a roller-coaster.
They stayed that way for years, getting much better around 2003-2004 when I was living in New Hampshire and riding up to 15 miles a day on my bicycle (school, work, and girlfriend). I was on lantus and humalog at the time, but my physical activity level was sufficient for me to not need humalog at all during the day, and my A1C was 6.8, practically "normal" glucose levels of a healthy person. The doctors warned me that it wasn't safe (and very irresponsible) to have two insulins prescribed and only take one of them, and I should have humalog doses roughly equivalent to the lantus I was taking daily. I showed them my bloodsugars, and I let them take my blood, and they were shocked to see how well I was doing. They didn't think it was even possible. Honestly, neither did I with my food intake, but the proof was recorded in my glucometer and the lab results. However, I was harassed constantly at school up there, as it would seem the people were just as cold as the winters in New England. I ended up moving back to Pennsylvania and resuming a sedentary lifestyle. I went from a fit 178 pounds up to a decidedly pudgy 235. Now, I'm 6'1" but a person can only gain so much fat and not look like a pear. my blood sugars suffered.
I hovered around 220-230 but considerably strengthened my muscles, so while I was still "heavy," much more of my body mass was muscle fibers. I worked in lawn care and was a great asset, as my physical strength allowed certain things to be done that would otherwise have required a hydraulic jack; like lifting the front end of a 15 foot trailer with two 60" cut lawn mowers so it could be attached to the hitch of the work-truck more quickly. "Did you just pick up the trailer...?!"
I'm also a fast learner, so I picked up the nuances of using those same zero-turn radius mowers along with weed trimmers in a commercial manner. Unfortunately, all of this physical work did nothing to control my bloodsugars. However, I was able to remain functional throughout fluctuations, so long as I didn't drop below 70. Some days at lunch, I'd be over 500 and wouldn't realize it until the meter told me. This is also the first time I experienced neuropathic pain, and it was terrifying! I was trimming around obstacles at the main RCN property near Bath, PA and I felt a pain like I had never felt before in my left foot. It was so severe I dropped my weed trimmer and fell to the ground, clutching my foot and trying not to scream. This was due the the fluctuations I was having, though, and I have a feeling the fluctuations were stress related; all of my co-workers were crack-heads (quite literally) and they became progressively more abusive the more they craved their habit. I quit the job after a verbal altercation with one of them, because I knew if I ever saw him again I'd end up in jail. This resulted in a huge depression that I've just now started to lift out of, and it happened in 2008.
My A1C shot up to 10.5, sometimes over 11, and I just didn't care about anything anymore. I stopped exercising and eating, pretty much...except for candy. I lost about 50 pounds within a year, and it wasn't through anything I was consciously doing (well, consciously but not directly intentional). I hovered around 168-170 lbs for quite a few months, and everyone I cared about started to worry about me because I looked like hell and they knew about my psychiatric hospitalizations as well as the diabetes. My eyesight went from 40/20 in both eyes to 20/20 in my right and 15/20 in my left. I had micro-aneurysms in my left eye, but luckily they didn't cause any direct retinal damage and healed fine on their own. I went through years of not caring about my physical health and doctors constantly telling me I'd end up losing my eyes, or my feet, or anything, really. The psych meds I was given weren't helping, either. They had a tendency to raise my blood sugars far more than simple eating or sloth would. This meant I cycled through meds not only because of their fleeting positive effects, but their tendency to jeopardize my physical health.
Currently my pancreas doesn't work at all...or it does, but my immune system is killing beta cells before they do their job. I had a pump from January 15 2011 until some day in March, when I blacked out and smashed it against the wall in the Behavioral Health ER of Muhlenberg. They didn't take the pump from me, despite my suicidal ideations and willingness to hurt myself. I blacked out when I realized I wouldn't be able to go home that night. When I came to, the pump was completely broken, and the staff had actually been watching me destroy the $6,000 mechanical pancreas. They only restrained me when I banged my head against the wall in frustration. The sad thing is, within the first month I had the pump, my glucose averaged about 150. I was able to drop my A1C by almost 2 points, from 11.2 to 9.5. After I lost the pump, it went back up to 10.5, and I was essentially waiting on my new endocrinologist to write me a script for a new pump, because I was told by both Animas and my insurance company that was the only thing keeping me from getting a new one. That, and Muhlenberg refused any responsibility for the destruction of something that could easily make a down payment on a new car despite it being their fault I still had the potentially lethal thing in my possession.
So, the months go by, and I phase myself off of all psych meds, because nothing is working. The antidepressants are making me feel worse, and the antipsychotics make me hallucinate more. The depression lifts when I'm off of the antidepressants, and my doctor tries three brand new antispychotics on me; latuda (which makes the hallucinations terrifying) saphris (which makes me feel like I've got the flu) and fanapt (which gives me pains reminiscent of freaking angina). He's tried everything, tells me the hallucinations I'm still experiencing are organic (meaning no med can help me), and makes me get an MRI with the added justification that I've been having migraines for the past 3 months at that point. He thought I had been doing hard drugs to cause the hallucinations, but also said they can be caused by tumors or aneurysms (which would also cause headaches). So I think I have a mass or an infarct in my brain. meanwhile I can't eat because I get nauseous when I put things in my stomach and am in constant physical pain, as well as getting migraines and indeterminate abdominal pains for the past 4 months (coincidentally since stopping my use of cannabis). My blood sugars are crazy at this point. Some are ludicrously low, some are so high my meter won't give me the number. Turns out there's nothing in my brain showing abnormal chemical signals or any sort of damage.
It's been 4 months since the MRI, and I still have crazy physical symptoms I can't explain, as well as hallucinations when they're really bad. My blood sugars are better; my A1C should be around 8.5 now, my average is about 190. I can't eat, though. I'm really scared. I force food into my body around company, but eat sparingly at home. I get nauseous with any food or drink, and as the food passes through my GI tract I get painful muscle spasms. I went to the ER on 10-17 and they couldn't find anything. They said if I admitted myself for psychiatric reasons, they'd be able to monitor me and do further physical testing. I was at Muhlenberg again. Turns out, the ER doctor lied to me to make me sign myself in. My pains were ignored, and even though I told them ibuprofen and acetaminophen never worked for me, that's all I was offered for pain. They told me it was psychosomatic, and tried giving me ativan for anxiety, which I had taken before to no effect. I was prescribed nortryptaline for depression and neuropathy, as well as insomnia. Also, ambien for sleep if the nortryptaline wasn't working. The nortryptaline had a metabolic effect on me, but it made my glucose lower on average. My carb coverage was shut off for some asinine reason, and I ended up with a bloodsugar of 451 by bed time on the 18th. By this time, I hadn't had a bowel movement in 3 days, and I was really uncomfortable. My high was covered, but I was surprisingly alert for someone who had taken a 10 mg ambien 3 hours ago. I wanted to check my bloodsugar and try to get my movement...moving. my bloodsugar was 150. It had dropped 301 points in 3 hours. The night nurse was not concerned about this, but I knew it would be a problem later. I got everything situated in the bathroom with some "help" (rather not detail it), and started feeling like I had a low blood sugar. It had been an hour since I was checked, and the night nurse was not happy about that.
Mike:"Stop bothering me. You're worried about voiding issues, you're worried about your blood sugars, just shut up and go to bed."
Me:"Well, alright, but my bloodsugar dropped over 300 points in three hours since my snack, and-"
Mike:"How long have you had diabetes?"
Me:"15 years."
Mike:"Then you should know that that is how insulin works, and you should be quiet and try to sleep."
Me:"It was 451, and dropped down to 150 in three hours. It's been an hour since then. How-"
Mike:"It was probably so high because you ate too much and didn't tell anyone about it!" (patients often held on to extra snacks-I did not, because eating hurts me)
Me:"No, my carb coverage was discontinued after lunch and no one told me until after I ate dinner!"
He rifled through my medical papers to try and prove me wrong and keep me quiet. He actually found out I was right.
Me:"Ok, if my symptoms get any worse, will you check my bloodsugar?"
Mike:"Yes."
I wait 15 more minutes, and, as I predicted, my symptoms keep getting worse.
Me:"Will you please check my blood sugar now?
Mike:"This is the last time tonight. I won't listen to you any more after this if your glucose is fine."
It was 73. Technically not a low, but it had effectively dropped by more than half in an hour and 15 minutes. Without treatment, I would really start feeling like ■■■■. I was awake because of how quickly my body was metabolizing glucose.
Mike:"...Oh. All we have are animal crackers and graham crackers."
They had a fridge full of milk and juice. I didn't complain, and just took the snacks they gave me. I ended up telling Mike's boss what he did (and she remembered me, like Mike should have, and I had always been accurate about my gut feelings on my blood sugars any time I was a patient), and on the Patient Satisfaction Survey, I wrote a scathing review of my care. Luckily, I had signed a 72 hour release and showed no signs of violence, be that a danger toward myself or others. In fact, I was downright amicable towards everyone (except for that joke about being an alcoholic to the hospital psychiatrist {I don't drink much...just til I pass out.}), meaning they had no reason not to let me leave.
Still, I was leaving against medical advice, because they weren't done trying the nortryptaline on me-which, by the way, has a potentially lethal reaction when given in conjunction with ambien, which I had been taking while there. Central Nervous System suppression; anything autonomously controlled by the brain, i.e. my heartbeat and my breathing, could have stopped spontaneously.
I continued the nortryptaline and suffered through insomnia, but enjoyed the benefits of less insulin. My dose was increased to 25 mg from 10, as I had not been sedated by the starting dose, and I remained without sedation; all that increased was the effectiveness with which I used insulin in my body. Unfortunately, my PCP gave me an anti-spasmodic for my intestinal discomfort that turned out to be incompatible with nortryptaline. Same potential reaction as ambien. I saw my regular psychiatrist again and he took me off of the nortryptaline, as it was physically dangerous to keep taking it not only because of its reactions with other meds, but its effect on my metabolism and the fact that it wasn't working at all. Oh, and when it would start working, considering I was re-diagnosed with schizoaffective disorder, it had a high potential of making my hallucinations much, much worse; which made me wonder why I was given it in the first place. Now I'm on gabapentin for neuropathy, body pains, and headaches...and depression. Unfortunately, since scaling up to the therapeutic dose, my depression has increased, and I've started getting suicidal thoughts again. Oh, and ED, which seems to happen whenever I'm on one of these damn meds. Blood sugars are fine. I'm gearing up to just bear with the pain until I get tests done to tell me what's wrong; I've got a gastro appointment on thursday, working on getting a neurology appointment, and eventually a rheumatology appointment.
By the way, the only way I could afford all of this crap is if I was on disability, because I haven't actually worked since 2008.
Asperger's Syndrome. Got diagnosed in 2004. With all of the crap that happened from early childhood to 2007-2008 (because I've always been different {constant verbal abuse, being ostracized from groups of people for being myself}), I lost my patience with normal people and now can no longer tolerate jobs where I have to deal with customers directly, or communicate with co-workers. And, apparently, GI issues and fibromyalgia are relatively common in people of my particular neurology. Plus, with all of the physical pain I'm dealing with, and not knowing what's causing it, it counts as overstimulation, which will cause panic attacks in people like me. It used to be loud noises or bright lights, but now it's sheer agony. Since no medications have been effective in managing my symptoms, all I can do is pop two 1 mg xanax at a time when I feel a panic attack come on, because they're so severe that just taking one doesn't work anymore. Don't worry, that's on my doctor's orders.
And, my wonderful insurance no longer wants to pay for the test strips I've used in the only meter I've personally found that helps me control my blood sugars; the One Touch Ultra Smart. On top of that, the FDA even says it's the only one that helps control averages by displaying trends in directly visible formats both on the machine itself, or via USB cable onto my PC. On top of that, it's the One Touch Ping, which doubles as a remote control for the Animas pump I broke in March under the watchful eye of 3 orderlies, two techs, and a nurse. One vial costs 34 dollars and contains 25 strips. In a script, I'd normally get 8 vials. I have to either hope my endocrinologist was able to do a prior authorization and made sure my insurance knows the strips are medically necessary, or I have to switch to Bayer meters, which would completely squash any chance of getting another Animas, the pump I already know how to use.
EDIT: Ah, and my endocrinologist called; they said my insurance DOES cover my test strips, and they're the ONLY test strips my insurance covers. I'm really confused. My pharmacy did something wrong again.