Living with Vertigo

A periodic update on my diagnosis, doctors visits and search for the cause and a cure

[living-with-vertigo]

I Don’t Ever Want to Stay In a Hospital Again

My friend wanted to me to go with her on one weekend to an her friend’s art gallery opening where she was going to have some drawings exhibited. I reluctantly agreed because I just am not feeling so hot these day -- months, really. The whole year has been crap. There have been some kindness, and a lot of expenses, but overall, this might have been the worst year of my life. And I say that every year, but truly, between school overwhelming me, fighting with my brothers over nothing (aka inheritance), and my dog losing his mind and dying -- no, this has got to be the worst year of my life.

And so, we went to Harrisburg, PA, for the first time. Her pal wanted to go at the last minute. I formerly used my car as a delivery vehicle, and I haven’t cleaned it up since I quit doing the deliveries. That’s another thing -- I was not getting paid for all that work I did. Not this year, not last year, not the year before that -- less, and less and less. And so I got fed up with it, and when the “boss” said I shouldn’t have to do them, that he didn’t want me to do them -- I was like, “Forget this mess then. It’s nothing but a detriment for me. It costs me to work for you doing this. It hurts me physically, wears me down spiritually and I end up suicidal after a few hours on the road. Each and every week.” I mean, how did I go from delivering newspapers as a kid, back to delivering newspapers as an adult. Ah, another story....

My car was really loud on the way up there. It sounds like a truck, but it’s a Honda Fit. I think the tires need balancing, but I don’t want to spend the money.  It needs airbags and all kinds of work. It’s been banged up and run into by so many people -- just by being parked on the street or in a lot. I mean it -- I swear, someone ran into it again today and scuffed the bumper up all over again. It’s terrible. I was embarassed by the state of my dirty car, but oh well. I didn’t have any head rest for her friend because I took them out for the deliveries. It took an hour-1/2 to get there. Her friend was an older lesbian who works as an architect, but she’s lived all over. She said during the car ride, that she didn’t think I wanted to work anymore. It kind of struck me that someone I met brand new would just blurt out something like that. But she asked if I watched porn, too -- which was totally out of left field; not even close to what we were talking about. Well, it took me a moment to process what she said, and I thought and said, “You may be right about that.” But really, that’s not true. I want to work -- I just want a job that I can do, and I want to do a good job at it. And I don’t feel nearly confident as I used to that I’m qualified. All this school, and I don’t yet qualify for anything in particular other than needing more training. Maybe that’s the way the world works. I don’t know after all this time I spent dedicated to this company that never pays me but a modicum of cash -- plus health benefits. The health benefits are the #1 thing, though. 

We spent an hour or so at this friend’s tiny gallery in Harrisburg. It was essentially the 2nd floor of a townhouse. He had a good turn out. The artwork was a mix of ideas and stuff. No real theme. They had food there and drinks. And I was talking to my the older lesbian about stuff, and she had set her drink down. And I brushed it with the back of my hand and it spilled all over their new carpet. It was just diet soda; no big deal, but I embarrass so quickly. We had been sitting on a kind of bench -- like not new, like weaved straps of leather. The spill cleaned up pretty quickly. But not before the gallery owner’s husband saw us. It was so embrassing. 

I went outside after that. And then we went to a local bar/restaurant. Before we got there, my low-air tire warning light came on. Oh, God -- we’re in Pennsylvania, and it’s way after dark. So, we went to eat and I said I’d get air when we would come out. It was just common American restaurant food. I had a Cobb salad, as usual. It had corn on it. I ate the corn, which I wouldn’t use to because I’m low-carb. Or I used to be, very exclusively. The mood I’ve been in has made me less stringent. It didn’t affect my glucose too bad. I didn’t have a drink or anything other than soda and water. We paid and left -- not many people there, mostly on the outside deck. 

We got in the car and I tried to find a gas station with a pump. I got gas, but the pump was broken. I was concerned, and frustrated and my eyes were kind of blurry and my head was swimming all day anyway. So, I didn’t follow Siri’s instructions and took a left at the next light. Before we got there, the lesbian said that I should watch out for the cop that had just pulled someone else over. I laughed, like why would I get pulled over?!? So, then the cop pulled me over. WTF? She said I had turned left at a no-turn light. And she was really crabby and acted like I had brazenly done it in front of her like a dare. And this cop, who also looked like a butch lesbian, was like: “What are you doing here?!?” And I was like, “I just want air. I’m not from here.” And she goes, “I’m sure they have no-turn signs in your city, don’t they? And you don’t ignore those, do you?” Uh, no. So sorry.... She came back after a while and let me go with a warning, thank goodness. And then she said I was in a bad part of town and that I needed to turn this way and that to get out across the bridge, and get out of the city -- the Capital of Pennsylvania, because I didn’t want to stop at any of the gas stations there. It’s dangersous. Oh brother. 

So, we high-tailed it out. And I got some air way down the road. It was a really good air pump, I must say. And we made it home, but I was exhausted. It was like 2am by the time I got home. 

The next day, I laid in bed and didn’t do much around the house. That was Sunday. 

Monday, I woke up and went to pee around 6am. And got back in the bed and went to sleep some more. 

At 9 am, I got up and ate some broccoli and cheese, and pretty soon after I felt like I had to poop. And it felt like it might be kind of runny. So, i went to the toilet, and it was runny. Gross. But it was plopping out in this weird, soft way. I thought, ugh -- this is going to be blood.

I’ve bled from my behind before -- from a fissure for years, and a hemorrhoid after that, for years. It comes and goes. Very irritating. But this felt like a lot of blood was going to be on the toilet paper. 

And so, I looked at the toilet paper and it was a horror show. And what was in the toilet was so much blood splattered. Dark maroon blood and some bright red, but mostly dark maroon. 

And then it kept coming out, and coming out, and coming out. After an hour, I was running around the house trying to pack stuff up to go to the hospital and phoning my partner and my ex in desperation. And I packed up all my diabetes stuff and my wallet and stuff in a panic and by 11am, I had called 9-1-1 telling the operator that I was bleeding out of my butt really bad. 

And so, they sent a fire engine. A fire engine? Well, they explained that they were the first responders, and an ambulance would be by in a minute. So, I kept telling them in the most embarassing way that I was bleeding out of my rear end, and had to keep running back inside to let it out. And they looked like -- like confused, and weirded out. I’m sure they see worse or weirder. It didn’t matter. The ambulance came and took over. I kept running inside to go to the bathroom. It was awful. Then they said that they weren’t going to transport me, and that another ambulance would come. 

I begged the next ambulance to take me to my hospital, but they didn’t -- they took me to the closer one, a famous teaching hospital with not a very good reputation. It’s an “urban school for urban pupils and urban patients.” At least that’s the reputation it has, based on both media and colloquial. social understanding. Pride, really. But for those of us not likely to participate in their “urban” pride, it is not anyone’s first choice.

They wheeled me into the ER and I had to go to the bathroom immediately. They checked me in and I laid there on the wheelie bed for a little while. But then they told me to get off and go wait in this waiting area. There were some very urban people there, waiting. I sat down and this woman came over and bitched at me for taking her seat. There were at least 2 other seats there. Freak show, and it got worse after that with the other patients, but I wasn’t caring about any of them. Because I was being ignored. I had to beg and plead for attention. And because they couldn’t see me bleeding, they were like, “There’s people ahead of you.” And I’m saying, “I’m going to die if I don’t see someone soon.” And so they finally had someone see me after 4 hours of constant trips to the toilet. I had to clean the public toilet of my bloody spatters; and I kept wondering what else might be in that toilet. Gross. I washed my hands so many times and used that alcohol rub. There were people screaming in the waiting room. My ex came, and the my partner. And they stayed with me for a little while. 

The first doctor asked what was wrong, and asked for a stool sample, and I was like, “it better be a big cup because it’s going to all be blood. Nothing but blood. Do you have a bag to go with this?” And so, they gave me this little 1/2 cup container, and I filled it up with dark, maroon blood coming out of my butt. “No stool?” No, it’s all blood!

So, then the took me a little more serious. And they had me go for a CT scan. 

The thought from beginning to end of my experience was that I had a diverticuli on my colon -- a weak, balooned-out section of my large intestine -- and that an artery was bleeding into that diverticuli. They kept asking if I had pain, and I kept saying no. So, they called it a “painless bleed.” I didn’t doubt what they had been thinking, but they kept saying it could also be a hemorrhoid. And I was saying, “It’s dark blood, clotted, and it’s making my belly gurgle before it comes out; so I don’t think it’s a hemorrhoid.” But they kept saying it could be backflowing up into the intestine, or somesuch. 

The CT scan “shows diverticuli, and maybe some inflammation, which may be due to an infection.” So they started me one IV drips with antibiotics, and saline with dextrose in it. I’m Type 1 diabetic. I know you shouldn’t be giving me this sugar drip. But I fully expected this. 

So, after 8 hours waiting in the ER, they finally checked me into a room, and there was an old urban man in there already, on the opposite side of the room. It was a blank room, not a lick of art. It wasn’t clean looking -- not filthy, but all the corners and stuff looked scuffed and not like they’d been cleaned well. It was very 1970s-looking; and a little chilly. The bathroom was next to the bed, and the sink was on the outside of the bathroom. I tried to sleep, but I couldn’t because I kept bleeding and bleeding out of my rectum. It was awful .... [Part 2 to come]

[living-with-vertigo]

Daddies’ Baby No More

Right, so ...  the dog got sick and died. Well, he was 15-1/2 when we had him put to sleep. He wasn’t sick and he didn’t die. We had him put him to sleep because his brain came unraveled.

It was terrible. Truly one of the worst experiences of my life. It started a couple of years ago, I think. He missed the curb when trying to jump up on it. My fault really, thinking he was still a young pup. But he jumped up and missed the top of the curb and hit his chest or something -- something really hurt for several days, weeks. I forget. But that was the first, first time I knew his body was never going to be the same -- he was an old dog.

He got better, but not long after his personality started to change. He never played with his stuffed dolls or his squeaky toys anymore. Never chewed his rawhide treats. He slept a lot. He got an infection in his ear, and it smelled for the better part of a year. I finally cleaned it out enough that he shook the infection out in one big brown blob. Gross, but I cleaned it out some more and it never smelled sour again. I thought it was good and fine. But no, actually he developed a perforation and was deaf in that left ear, and we never realized it until the last couple of months. I guess that’s how it happened. Nothing is for sure at this point. Regardless, he stopped getting out of bed when someone would come home. Like he couldn’t hear us come in. Even with that he should have felt or smelled us. But he was tired -- tired old dog. He could barely get in or out of the bed. We got him some stairs. Eventually, I bought a couch thingy from Ikea and slept with him on that all of the time. Though, I have to say, for about a year he decided he wanted to sleep by himself in the living room, in one particular chair. It was weird -- he virtually never wanted to be alone or sleep alone. But he would jump out of the bed and go and be by himself. I got used to it eventually.

We didn’t have any extra money, so that’s why I never took him to the vet for his ear. I don’t remember having to take him for any other reason. When I was there that time, the doctor said his heart had a murmur -- and we’d heard that many times since he was a young pup. But he never seemed bothered by it. A murmur is like a swooshy sound in the heart beat that indicates that the valves are not working right -- like they are leaking. Again, it never seemed to slow him down. But this time, when he hurt his chest or whatever, she seemed so gravely concerned about it; as though he had weeks or months at best to live. It really shook me up. I had to call around to doggie cardiologists, and the basic fee was $800 just for testing. I gave up. I simply did not have the cash, and neither did his other daddy. His fate would just have to be.

I was preparing myself for a long time for that little beautiful dog to pass, but I wasn’t at all prepared for it to happen the way it did.  I started back in school, and said that the dog would die while I was in the middle of my semesters. We had a similar dog before who we took care of for someone else, and she died at 16 with lots of back and elderly problems. But our dog was very strong and didn’t have any significant back problems. Up till his final year, he would jump in and out of bed like he was a superhero, onto the hard floor. He did finally stop chasing the cat. And she seemed to appreciate that. We would find them sleeping together -- like neither of us was here all day, and when we got home, they’d be in the bed or on the couch together... almost touching. And then a few times, they really were touching furry butts. It was the most amazing, darling thing I’d ever seen. I won’t lie and say they were snuggle buddies, but it was pretty darn close.

My first semester back was difficult -- Basic Biology and I think the equivalent of pre-Calc. But I made it through, and I got two more As on the report card. Nice. The dog definitely didn’t like us leaving him at home alone, but he had the cat. And he held his pee almost every day, the whole time. Sweet baby boy.

Near the end of December, I think is when that all changed. Maybe it was January. But he started peeing in the house. It was like, “Oh, hmm.” And then I started to think he was just old and incontinent. And then it got worse. And I had feeling that he had a urinary infection. I still didn’t have any money at all. I was taking Chemistry and Anatomy and Physiology -- twice as hard as the previous semester. 

There were some great gals there thank goodness, who helped to drag me through those classes. Because my mind was less and less focused on what was happening there. Because my dog was old, and needed me, and he was ... dying. 

I’m sure I have perfect notes somewhere on all of this. But the next thing, I think it was February -- he started standing in weird ways. Like he couldn’t control his legs or balance right. He went away to Grandma-in-law’s for two weeks, because I was just too busy with school. And by the time he got back, his stance and balance were much worse. And so was the incontinence. I was ready to take him to the vet when he started having convulsions. 

This must have been April, before the semester ended. Finals were such a beast, and I was not grasping all of the terminology and concepts of Anatomy and Physiology. It was certainly important to me, but we had lab reports for Chemistry and I had to drive up and back from my city to both sides of the county -- like 2 hours drive one way, some days. My mom’s was nearby, so I stopped to see her a lot. I showed her the dog’s odd behavior on Facetime with our iPhones, but she could see it was pretty awful when I finally got him to her house.

The convulsions were mostly in his head. At first it was like little shaky tremors. And then it was his whole body. Or rather, he would be standing there trying to eat or drink, and he’s have this shake in his head and kind of collapse into his feed bowls. It was so weird and terrible. And he got into this rut of eating and drinking constantly. It was so strange and sad to watch. I finally took him to the vet after one particularly disturbing incident. The vet saw he wasn’t doing well, and I can’t remember what she recommended, but it wasn’t the right thing. My partner paid for the visit with a phoned-in credit card, because I’d left my wallet home. I couldn’t even get out of the parking lot, because I didn’t have more than $3 in mixed coins on me. The bill must’ve been a few hundred dollars for the vet. 

Oh, then I finished the semester and for some reason thought I could sneak in a summer class. That was not the right thing to do. We were supposed to be packing up to move. Why? Because my job collapsed and I didn’t have any money. Nothing coming in -- nada. The dog’s declining health was hitting us both hard. I was crying a lot. I couldn’t concentrate on that class. It was the preview of the lab technology and concepts that we’d use if I entered the program. But I can’t tell you what it all was about. My dog was dying -- dying!

And then his anal gland blew up. I mean, blew up in just one day. It started out as him not being able to poop right, I think. He didn’t know what was going on. But definitely, there was a lump on his but and I had read that anal glands on dogs can get infected and needed surgery. So, I took him to the animal hospital. I think that was more than $500, maybe $800. They popped it and stitched it closed. And he healed quickly enough. He was super uncomfortable with me trying to squeeze it out. I couldn’t do nothing. But the vet was trying to talk to me like he needs this and that for his odd behavior, and I was just going numb at the costs: $2500 for a CT scan? It was just awful and depressing. Even if I had the money, it clearly wasn’t going to fix anything. And she was going on about his heart murmur, too. And I was like: “It doesn’t matter. He’s old. He is not going to live forever.” To be fair, the first vet didn’t do anything helpful, but at least she was honest and said that these expensive procedures wouldn’t be worth it. 

He just kept getting worse, and we were both googling ferociously looking for any glimmer of hope or explanation. I kept coming up with doggie dementia, but kidney problems were a possibility, and the hole in his ear. His other daddy came up with this info about high blood pressure. Almost all of the symptoms were similar for these many conditions. 

But there were a couple of YouTube videos about dog dementia, and they were showing the dog stuck in the furniture, and crying and going around in circles. Another lady in the building started having nearly the same exact problems with her old curly gray-haired dog. She was clearly upset when I asked her. She said her dog had diabetes, but it was from an adrenal problem -- Addison’s I think. That she’d gone blind and would just stare at walls. She was on insulin and I tried to give my 2 cents. It was probably terrible advice. He dog died not long after. 

But ours was still going strong -- strong in body, but not in any other way. He seemed to have gone deaf and blind, but he wasn’t entirely. It got worse and worse. He definitely couldn’t “see” in a conventional sense. He could see the sun come up and would clumsily walk in and out of the curtains. He was peeing every hour. And the wood floors in the condo are pretty much ruined because of it. Again, we were supposed to be fixing up to move. Just a disaster. He was running into every wall and walking into every mess of junk and paper I had on the floor. I was doing deliveries for the publication one day and hurt my back. And I couldn’t pick him up to take him out and it was so terrible and awkward. And I ended up yelling at him and dragging him around outside because he was totally unresponsive. I was so frustrated and mad from the pain, and I was pulling my poor old dog around. He was dy-ing! [Head in my hands right now thinking about it.] Such a low point of my life. 

Well, we were trying all kinds of meds, and a 3rd vet -- a naturalistic kind of doctor lady out by my partner’s family home. It didn’t really matter what we were giving him. The hemp pills seemed to really glaze his eyes over and knock him out. The brain pills just seemed to agitate him. The ear stuff was just too late. And the breath pills were not helpful. His breath and been terrible that whole year. We never took him for a professional cleaning. When he was chewing the rawhide we barely needed to. Kind of self cleaning. And when the tartar did gunk-up and brown his teeth, I’d use the rawhide as a way to keep his mouth open so I could get a dental scraping tool in there. I worked. The last year, I tried. He absolutely hated me for it. He would nip at me and run away. It was beyond my ability to figure out how to get it done; and beyond us having no money for doggie dental care, we were both unsure that he would live through anesthesia. Ah, well, guess what happens when a little dog goes blind and loses his mind? You can hold him down and clean his teeth, and he barely cares because he can’t see to runaway anymore. I got them completely scraped off after a couple of days. And it turned out ... no cavities, no decay. The only thing he had was one chipped molar, and barely chipped at that. The tartar was so caked on there that you just wouldn’t have believed he had beautiful, white perfect dog teeth underneath there. And guess what happened after I got him all cleaned out? No bad breath. Totally gone. It was just the tartar catching food in the back corner gums of his mouth. I think so anyway. 

Well, it didn’t matter too much -- not for very long. I think it was the first vet, then clean teeth, and then the 

But then one day, he started breathing weird. Like panting. Like he was hot or like he had just got done running. It would go on all day, with the sound of air rushing in and out, and his tongue hanging out. He was having seizures every hour, and eventually almost constant. The only time he got any relief from any of this was when he’d fall asleep. 

Oh, I remember there being a 4th vet involved -- associated with the first one. He emailed a lot of questions, and one of them was: Is your dog wandering at night? This was early on, and I was like, “wandering?” Oh, yes, yes, that’s what he is doing -- wandering. Some people I was reading about online, they calling: Sundowner syndrome. Where a person or animal becomes agitated and active at night, after the sun goes down. Weird phenomenon, for sure. 

Well, between the panting and the going in constant circles and seizures, I knew he was just about done with this world. No saving him. My partner wanted me to keep trying these drugs -- brain drugs. Um, no, I mean blood pressure drugs -- see, there was so many ideas happening, one after another. We were so desperate not to give up on him. I don’t know how much it cost those last few months -- probably $3000 or more. We could’ve got 4 or 5 more dogs for all that money. Again, the first vet was like, “Yeah, that is the truth.” But he was not just “a dog” to us -- he was our first baby boy. Not just ours together, but individually, he was the first creature on this planet that each of us felt totally responsible for, who depended on us for everything, and who reserved his strongest feelings and affections to give us in return. 

The last weekend was the worst. It was Thursday when he stopped eating, it think. And I was like, “Fine, that’s it. He’s telling me he’s done. It hurts too much. No point.” So, his other daddy decided a vet’s office was too impersonal and he should die at home. Our home was in the city and it was just too much hatred for this condo already. As I said, we were trying to leave. We always promised that dog a home with a yard. And now, we were failing to deliver on our daddy promises. So, I said we should do it at his mom’s house. They have been through lots of pets, and he always loved to visit there. We had just left there a few days before saying goodbye forever. But all agreed tentatively. 

Between our condo landscaping and their landscaping, I took some pictures of him with flowers, so I could look back and remember him in a happy, heavenly way. Some of the pictures turned out nice, some are very sad, though. His eyes were very watery and he couldn’t sit still or see where we were or anything. Hard to realize that in the photo, but that’s the truth. The photos were for me, not for him. He just wanted to be held and taken care of in his discomfort. He couldn’t understand anything anymore.

I called around to inquire a week before that about at-home euthanasia for our dog. And they would have to drive from near my mom’s house, all the way to the other side of the city and into the next county. And the cost was well over $600. I was like, “I think the vet is fine.” And eventually the other daddy agreed. He made an appointment for Saturday morning.

This threw me into a fit. I always wanted to do paintings and drawing and a sculpture of that  beautiful little dog while he was alive. So, after I dropped him off, I went to the stores to find some clay. i think I went ot michaels and spent like $50 on some kind of red clay crap. It wasn’t actually clay, but like vegetable-derived clay-like product. Anyway, I got back home there and my partner went to bed, and I stayed up and made a big ugly bust of the dog. That material was lousy -- I mean, it just wan’t clay like I knew it. The end product didn’t look much like him. Especially in the neck and I panicked and made the ears too big. It just didn’t look much like him, or any dog of his breed. But I finished it best I could. Toward the end, he got antsy. I had him in his new dog bed that his gramma had bought him a few weeks before. He really loved that bed -- his own soft, fluffy bed. It was sweet of her. I mean, he adored that little gray dog bed. Anyhow, he was in the bed on a dining room chair. He got up to move around, and fell out of the chair onto to the top of his head. I barely reacted, other than for my heart to drop so. I put him up on the dining room table, and also on a carpet. I tried some 3-d scanning software, but it didn’t work well. Waste of time. So, I washed up and took him back to be with his daddy. The appointment was for 11am, i think. Not much time for a nap. But we laid there in the bed together, one last time. Daddy, Daddy and baby dog in the middle. 

And then we got up. We had some eggs and bacon that his sister made for us. It upset my belly, but my partner offered the dog some. And he took a bite out of it. Or he tried, He only took two bites and then stopped. I think he forgot he wanted to die. Kind of funny, that.

Well, as time approached, I just put him on my chest and laid back on a couch. And I put his mouth on my mouth and just breathed in his last breaths. I got the last dog kiss from him, that I would ever have. I started to bawl, and bawl uncontrollably. It was the end of my dog; my baby. And then they all started to cry, too. We got in the car and drove a short way to the vets. I took some more bad picture and some cute video of him walking around in the grass. I just did not want to go inside. But we did. We checked in at the desk and sat in there litle waiting area. They cleaned a room with a table and we went in and waited. 

It was noon, but the end of their Saturday. And I was crying. His other daddy was petting him and I was talking to him, and telling him thank you and he was was such a good boy, and no more pain soon -- or whatever I was saying. I don’t remember. Taking video, I think and saying how everything about him was so, so beautiful. 

The next part is awful, so I’ll keep it brief. There were 4 shots. It was supposed to be two -- one to knock him out, and one to stop his heart. The first shot was not as expected. Immediately after the shot, he started bubbling snot out of his nose, and it was horrifying. Oh my god. And then as the moments passed his body just got more and more limp. So, so, so limp. His breathing slowed and I was holding him and weeping, scared and incredulous that the life was leaving his beautiful, soft, warm body -- the baby we had known for 15 years, the baby we’d never see again. Oh god, oh god. [pausing and crying now]. I have to just tell you briefly what happened, or I won’t finish this. She came back in pretty quickly, and said it was time for the shot. And as she pulled out the needle, i started to freak out. She put it in his front leg I think, and then she stepped out. And we were just -- I don’t even remember, really. I was crying so hard. but his breathing almost stopped. And she came back in, and she said she needed to give him another shot because he wasn’t gone yet. And so she stuck it in his back leg, but she said the blood vessel wasn’t quite what it should be. So she had to give him another killer shot, and it would have to be in his chest. And I was just feeling tortured. I couldn’t even look. She plunged the long needle into his chest -- right into his heart! And when she pulled it out, some blood shot out and stained the white patch of fur on his otherwise brown body. And the blood was shocking to see. His other daddy said she stuck her finger over it to stop the bleed. I tried not to overreact to make her feel bad. It didn’t matter -- no turning back. It had to end.... And it did after that. My poor dead dog just laying there. The vet tried to console us with some heavenly promises, but whatever, right? And then she said she was sorry and we had done all we could. And that she knew it wasn’t easy. And I said that I was sorry for her, because I knew it couldn’t possibly be easy for her either. And then she started crying pretty bad. I just was so heart broken, and I said to her then, “You just have no idea what a wonderful dog he has been. No dog in the world has ever been as sweet and caring as that little dog right there.” And of course that’s preposterous, considering she sees nice dogs all of the time. Anyway, we said goodbye and she wrapped his body up in paper, and we left. We held hands and walked back to the car. I was bawling. His other daddy drove home and he was crying so, so hard. I tried to get him to pull over, but he wanted to drive. We got there and told everyone what happened. And then I left, tired and empty. 

And so, that’s pretty much how I’ve been for 3 months since -- tired and empty. I keep calling him out of habit. I cried for at least 2 weeks every day several times a day. I got some pictures printed out, and his ashes came back to us. We never got our glass etching that he paid for. Mess. He is in our hearts, and sometimes in our dreams. His presence is felt and yet absent. It makes no sense. If he were to show up here right now, it would be like nothing ever changed. We all had our places and our routines. And now all of that is no more. We still have the cat. She’s 11 already. And she’ been trying to fill in his place. But cat claws are not a substitute for dog kisses and tail wagging and greeting when you come home from a long day. Cats are a wonder in themselves, but they are not dogs. And if we ever get another dog, it won’t be like our first baby boy. I love him so much, and am so thankful that he came into our lives. I regret all the times that we did not get along 100% and especially the times when I did not recognize his troubles till too late. Most of all I wish we could have had that home and the yard. But that’s another life in an imaginary world that never came to be. It saddens me greatly, but time is a one-way dimension that we all pass through. If there’s a destination and a purpose beyond all of what we put up with here, then I truly wish to see my baby boy again some day. For now, the hole in my heart and a few photos and memories will have to do. 

Would have been nice to see him when I got out of the hospital. Yes, hospital.

[living-with-vertigo]

Limboland

Been more than a year since I wrote last. 

A lot happened, I guess. But I’m just trying to lay low at the moment.

Hmm, as far as I can recall: 

My only living aunt died. Her husband died several years ago. She had a new boyfriend of sorts, but he died earlier last year. Anyway, my aunt died and, while I didn’t keep in touch with her, I always asked my mom about her. They seemed to have some bad blood between them over her brother getting sick with heart failure, and dying. Anyway, we didn’t know she was sick. None of use did, except for my oldest brother. He’s the only one who makes enough and gets free travel with his airline job. So, he saw her like 3 times in the last 10 years. And that was enough for her to tell him that he’d be in charge of her estate. I didn’t know any of this.

To shorten a long, painful story, he wasn’t in charge. I was in charge of the Will and the Trust. And when I tried to discuss this with my oldest brother, he blew his lid for no reason at all and hung up on me. I haven’t spoken with him since, and probably never will again. Unfortunate, but he’s not exactly a kind person. I put my other brother in charge as much as I could, but he hemmed and hawed and went behind my back thinking he could work with the oldest one who wanted to be the head honcho -- always, Mr Right. And yet, a scaredy cat and bully for no reason at all. 

Again, shortening this, it took months and many painful discussions, but I was completely right about everything I said and did. And I just bailed out of it and let them hash it out. I got some money out of it -- more than any of us ever thought that they had. She died in squalor. Like of her own making. Like “Hoarders” level 10 junked up house full of rodents. And she had a roommate. No wonder she got sick and died, and her 90 y/o boyfriend lived and died there, too. Anyway, it’s all very sad and unfortunate. And If felt responsible because, indeed, the pair of them had put in charge of their affairs. But why then wasn’t I give the slightest hint of such a thing -- 25 years passing by since they signed their documents. Not a word. And then the aunt had signed on for my oldest brother to have his name on her primary account. 

My main beef with him was that he said he didn’t have time for me “b*s*” and “f* it, I’m going to keep all of the money.” [clickl]. See, now you might think I was put off because I wanted some of the money. But I didn’t. I don’t care much about money. It’s just money. If you don’t have any of it, than you barely miss it. It is a very “necessary evil” because even if you don’t want much of it, everyone else does -- for food, for housing, taxes, medication, healthcare, energy.... I haven’t had any good amount of income for a long while. I work for a print media, and Lord knows that is not a place to be these past 20 years. Yet here I am. It pays for my healthcare, and not much else this year. I think I got 4 paychecks. Better than nothing.

So, yes, I definitely needed the huge boost in reserve cash. And between my mother, my middle brother and my desire not to expire, I gave in to whatever they wanted. The oldest one was talked into giving the middle one 1/3 (allegedly) of what was in the bank account. He had to sign a paper saying it was a thankless gift from the older brother who didn’t owe him anything -- it was a gift. My mom was so heartbroken through all of this. She did and didn’t want to be in the middle. It was her brother’s money, and like I said, she was chief among us thinking they didn’t own a penny. And again, none of us knew she was living in rat-infested-feces-covered home that was being burgled repeatedly, or that it was a hoard among hoarder’s nightmares. Except my oldest brother -- he knew. He’d been there. He’d been talking to her. He knew she was sick and that he’d been given this money. He knew she had rats soiling her home and carpet and it smelled like infection. And then he is like, “You don’t know what it’s like here!” And I’m like, “I guess not, if you didn’t tell anyone.... Anyone that you had this giant wad of money coming to you.” 

Actually, I never said that to him. I never said one single unkind word to him. But I did to my mom and my middle brother because I was so angry. At one point, I wished his plane would crash when he was headed home. My mother was horrified, and she threw me out of her house at one point. My other brother kept saying it was going to work out, and then they spent a week together at this ratty property. And boy-oh-boy did we get an earful after that. He said he never wanted to see or speak to my brother again, and that I was absolutely right about him saying he was going to keep everything, blah, blah, m*f-ing blah. 

But I did get the money, and my income completely dried up. 

And then my dog got sick and died. 

[living-with-vertigo]

A lot of changes, but missing the spark I need right now

Well, it’s beginning of September 2018. End of summer. Beginning of fall. And that always means 1 thing for me for the past 30 years: Ragweed. 

I’m trying to switch up medications -- back to Loratadine instead of the Certerizine. It does not seem to be helpnig much. I have so much trouble separating out one weird physical thing from the other weird things. Process of elimination and Googling are about the only tools available. 

I’ve been having this “twinge” between my eyebrows. And my legs still feel weak a lot of the time. I’ve only been taking Levemir, with Zyrtec/Certerizine, and occasionally a baby aspirin.

I don’t necessarily think my problem before with the leg pain was due to Vitamin D anymore. Who knows? I’ve gone back to taking it a couple times a week. I tend to think there is a link between normalized Vit D levels and better glucose control. 

My glucose at the moment is not so great. It was super duper last week and for almost a whole month. But today, I can’t get it under 100. I don’t know why. I’m kind of sad, and constipated, and just worn down from the ragweed pollen. Usually, I have to go to the toilet a few times a day. But I ate something that just did not go well one day -- and everything came out. And I haven’t recovered internally after that. I feel like puking every time I eat the past couple of days. I can eat, and while I’m sitting in class, my belly is giving me pangs like it is about to rumble super loud. And it has. And I’m pushing on my belly with my arm to try and keep the noise at bay. I don’t want to walk out of class, but I did on the 2nd day of Math, because my gut just doesn’t stay quite in class very specifically.

Yeah, I’m saying I’m back in college. I want a Medical Laboratory Technology degree. It will take 3 or 4 years. I’m not young anymore, so it’s kind of a struggle to not concentrate on the fact that after 4 years I’ll be closer to retirement age. Not that old, but I have to weigh the reality of the time commitment, the loss of income from tuition and travel, and the whether I am ready and capable of starting over again.

I know my current job is in trouble, again, haven’t been paid all summer. I can’t tell you what that is doing to my self-esteem. There’s lots of other signs things are taking a nosedive. I was hoping I could eek along for 2 years, but I don’t think that’s going to happen. Jeezus! 

My dog is getting old. Seems hard of hearing. My mom is about the same. We’re all getting older and slowing down. My mental curiosity and interest is still quite high. My capacity to learn quickly is not as high.So, I’m having to put extra effort into school studying. And it is draining. 

I barely slept at all on Wednesday. And still stayed awake somehow for about 32 hours. They had an outdoor meet-n-greet function at the college yesterday, and I went and talked to a couple of folks. It was kind of great that I bothered to say hi. It was hot out. They seemed like they weren’t that interested in me, or maybe they were just hot. I had to change my shirt. I don’t know why I sweat so hard now. 

It’s definitely one of the hotter years on record, I’m sure. It rained a ton, too. My mom has a hill she plants flowers on, and after digging it up all of these years, it is more dirt than plant roots. It eroded terribly this year. I will have to go and do some shoveling from the bottom, back to the top when the season is done and the ground hasn’t frozen yet. 

Did I mention I have to study. There’s so many big books to read. Only 2 classes, and I’m kind of overwhelmed. I’ve been using my iPhone to take pics with Microsoft’s apps, and then translating them to text. That works really well for text-to-speech so I can listen in the car. But it is time consuming. And there are a lot of formulas that don’t convey well over audio. 

I’m headed to the beach for our annual 1-weekend vacation time. I haven’t been working out at all the past 2 months. Not significantly anyway. Probably another reason my glucose is higher. Muscle soaks up glucose. I just don’t have the hormones I need to do it, though. Right now I need to be driving to mom’s to drop the dog and cat off, and all I want is to go retreat to the dog bed with the dog and sleep with the dog. 

I think I’ll go do my nasal-sinus rinse and hopefully that takes some pressure off my face, and I can lighten up and feel more awake. God I hate ragweed.

[resilient-wildflower]

6 months later and I am down in about 10-15 lbs range? I don’t know how much I have exactly lost yet but the beginning of this month was a total on 9 pounds and I have shrunk a bit more since then. I really need to buy a scale. I am forever borrowing my neighbors. As soon as I find out I will post.

[living-with-vertigo]

👍

[living-with-vertigo]

Novilin R insulin messed up my nerves. Side effect: Burning Mouth Syndrome

I just want to put that out there -- that I am 99% sure that the Regular insulin I bought at Walmart for $25 caused me to have Burning Mouth Syndrome. I tried R insulin last year, as a faster-acting to go with my long-acting basal Levemir. I had problems with it the whole 3 or so weeks that I took it. I never felt right. Very nervous and jittery -- unsettled all over. That was at the end of last summer, and as soon as I stopped, I realized my tongue was going numb on the sides. And then it started burning in the middle. I looked it up on Google and Burning Mouth Syndrome was the absolute explanation for the nerve damage.  But I wasn’t sure that the insulin caused it, because, while I didn’t feel good on the insulin, the BMS didn’t seem to start till a couple of weeks later, when I was stopping it. Believe me, I never took much of the R insulin. A couple 1- or 2-unit doses per day. And not every day.  Almost a year later, I’m having similar higher glucose readings, and I don’t want to up my basal; because I think that is not the best solution. There should be a combination of basal and bolus, if possible.  Well, I tried it again, cautiously -- 3 whole units over two days. And the first unit, my tongue immediately went partly numb. The second unit the next day, I had fasted all day. It did not bother me too much, but I was eating right after I took it. And the third unit a few hours later -- OMG. My tongue went numb again, and the tip of my tongue was burning really bad. The inside of my lips were burning again. And then it got up under my cheekbones, like making my upper molars ache. And then it got in my eyes.  I just had to keep telling myself, “It’s not going to kill you. It’s probably doing permanent damage, but it’s not going to kill you. You will be fine.”  Seriously, I’m shocked at the reaction it has caused. And the nerve damage is significant to me. I get really depressed when the BMS is acting up a lot. It is pretty random. The only solution I have to make it dampen down is to eat and drink frequently. If my mouth sits for a while with not much to do, then it just gets intensely painful with the burn.  I know millions of people have taken R insulin over the decades. And I also know that diabetics are more prone to developing Burning Mouth Syndrome. I can conclude to my own satisfaction at this time, that the Novilin R insulin caused me to develop Burning Mouth Syndrome. I still want a more rapid acting insulin, but Novilin R is definitely a NO, NO, NO, NO, NO for me.

[living-with-vertigo]

Too Much Vitamin D? Pain in Legs and Weakness all over.

Oct. 29, 2017 -- I've been taking Vitamin D3 for a few years -- sparingly, maybe 500 or 1,000 in a week or two. I was diagnosed with autoimmune diabetes, and read that many people with diabetes also have low Vitamin D, and that Vitamin  D3 can improve the immune system. So, I got tested by my Dr. -- it was like 25 or 26. (30-100 normal range). So, I upped the dose to a 5,000 pill once or twice a week. After a while, I didn't know if I was helping or hurting. So, I ordered my own follow-up test, and it came back at 32. Okay, in the normal range, but better. My favorite diabetes doctor recommended people get up to about 50 or so. I've been taking it lately maybe twice a week for a while, and just recently began having episodes of extreme weakness, and pain in my legs. It starts in my knees, and radiates down my calves and up my hamstrings and it aches for hours. I feel weak and dizzy, and all this with very little activity -- I mean, I walk some and bike a little, but at 50, I am not in terrible shape. So, I keep a pretty good food / med log. And I couldn't tell what was causing this -- pantoparazole, low-carb food, tums, alka seltzer, claratin, zyrtec, and vitamin D3. But I switched brands of Vitamin D, too -- there was a sale. What could go wrong? Well, looking at my food/med log, I see that the weakness may correspond with the Vitamin D3 capsule. I got my levels tested again, and I'm up to 45. Normally, I'd celebrate being in a measurably "normal" range -- but I feel horrible. Like I'm going to pass out, and so weak, and this radiating ache from just walking a block, it lasts for like an hour or two. I wonder if I've got MS or some other muscle & nerve problem! But, the log shows a possible correlation with the day or next day after taking the D3. I'm cutting it out completely after what happened to me this morning. I could barely drive home. Scary stuff. Glad to find this article and forum. The other posts I'm reading are mostly that people have weakness & pain from too little Vitamin D3. Perhaps my dose of 5,000 IU is too high, though I don't take it but about every 4 days. My doctor said to take 800 IU a day, so, it's a pretty close match. Very confusing -- maybe it's the brand. I don't know. Just kind of scared to go out anymore.

Also, I eat tons of cheese and almonds, both high in calcium. My last two calcium serum tests came back as 10.1, which is right at the high end of normal. I asked a doctor about that a few months ago, and she said it was not out of range (8.7 to 10.2 is considered normal). Over the years, I’ve been running around 9.7-10.1, so not much difference there. I hope not taking th D3 is the solution. Otherwise ... <:O

Oct. 30, 2017 -- OMG, I feel so horrible. My legs feel like they are absolutely losing all energy. They are buzzing with waves of like aches and horrible electrical energy. I have NO IDEA what is going on!

Making appointments today to see my Primary doctor, and also a neurologist. I have some kind of lousy problem going on.

And the dog is terribly sick, too. When it rains, it pours. Scaring the crap out of me. 

Reading more about leg pain, it could be a number of different things:

Peripheral arterial disease

Multiple Sclerosis

Guillain Barre Syndrome (from the flu vaccine?)

Pinched nerves in my back

[living-with-vertigo]

Declining Honeymoon Phase

Looks like it’s been about 11 months since I last wrote. It’s not been horrible -- but it’s not been easy at all.

Whatever the various authorities and patients think defines Latent Autoimmune Diabetes in Adults (LADA), the primary problem is autoimmunity. I’ve come to understand that autoimmune disease is possibly one condition that affects multiple systems of the body -- like, if you have one autoimmune condition, it is contagious to the other systems of your body. Well, that’s one researcher said recently. What the group think knows is that a person with Type 1 diabetes is more likely to have, or to develop in the future, more than one autoimmune condition.

I often wonder if I have a condition of my spine (ie. ankylosing spondylitis), of my eyes (Sjogren’s), and possibly all over. My friend from high school, “K.,” told me this year that she has had autoimmune diabetes since she was about 25. I thought she developed it much more recently than that. She has struggled over the years with her weight and other issues. After I got LADA, she started going a bit loopy on FB -- said she became a born-again Christian, and posts all manner of self-affirming “tests” that say she is a wonderful person. She is a good person, don’t get me wrong, but an web page that asks you to choose your favorite color or TV character is just silly. Anyway, she recently started posting much more dire shout outs to the world for relief from pain and misery. She was at the ER, which proabably turned out to be early DKA. She also passed out and broke her jaw, from postural hypotension apparently, and she was finally diagnosed with both Lupus and fibromyalgia. God bless her, indeed. 

Now, in my world -- hmmmm. Not sure what’s happening. In Jan-Feb-Mar of 2017, my pancreas was making plenty of insulin. My injection needs dropped to just a few units of Levemir each day -- 6 or 8, I think it was. But then came April. I have lots of pollen allergies every year -- from beginning of spring till the end of fall. And last winter wasn’t so great either. In April, my basal insulin needs tripled over the course of a week. Like from 8 to 24. It really troubled me for a couple of months. I figured it was the inevitable “declining honeymoon period.”

I had asked for rapid-acting insulin from my endocrinologist before, but as my last post said, the endos and my primary doctor are colluding against me and trying to get me to raise my glucose levels and A1c. It’s very disturbing. I was at a 5.3% POC finger stick, and by June it had risen to 5.8% at an urgent care POC finger stick. 

Why was I at urgent care? Because I had all manner of nerve problems in May and June and July. My feet and hands really started to get whacked out with tingling, burning, twitches and discomfort. I couldn’t figure out what the problem was exactly. The list of possible culprits was long.

I thought it might be early neuropathy -- I have diabetic acquaintances who cannot feel their feet, and other people online said they had numbness in their feet as a precursor to diagnosis. I’ve had weirdness over the years -- most notably carpal tunnel in my wrists in 2013, while trying to paint the country house.  It definitely seemed like an electrical / nerve problem. My glucose was over 100 for much of that time, and there seemed to be a trend where when i was over 120, my nerves would go whacky. Was that because of neuropathy or because of stress? I don’t know. The hand and feet problem hasn’t really gone away completely, but it mostly subsided.

Then, about 5 or 6 weeks ago, around the beginning of August, I started complaining a lot about my tongue burning. Like all day, every day. There were a couple of tastebuds that were irritated, but they’d settle down and the burning would continue. And then it started getting numb on the sides of my tongue further back, and then under my cheeks and in my lips. And recently under my tongue. I called urgent care again, and then Googled it -- “Burning Mouth Syndrome: Unspecific cause, no specific cure; possibly GERD, trigeminal nerve damage, diabetes, nutrient deficiences,....” Ugh. 

I wake up with a sore throat almost every day, too. I thought that must be GERD again, so I started taking Pantoparazole almost every day. The GERD this week has been horrible. My throat is so irritated. I’m taking every kind of medicine I have to try and keep it at bay -- Gaviscon US, Gaviscon UK, Alka Seltzer, and PPI. It’s beyond obnoxious when it gets going. The best treatment seems to be to just calm down, and possibly put water or something else in your mouth to distract it. As I type this, it is annoying me with numb spots on the sides. The feelings are a range between black pepper burn and novacaine-style numbness. Why? Why, why, why, why? WHY?

That’s all about i can write now. My ragweed allergy is robbing me terribly at the moment of energy. I keep trying. I keep wanting to feel better, to figure out these issues, these treatments. But then another thing happens. It is dreadful, but I keep trying.

[living-with-vertigo]

Dumb Doctors

Doctor's are colluding against me for wanting a normal glucose level. I swear it's Bizarro World. I saw the endo last month and he wanted me to lower my insulin to raise my A1C some -- and I told him no way. Uh-uh. Nope!. I asked if he had a Tresiba sample, and he replied that he never prescribed it before and I was fine on Levemir.  I had some bad gut problems flare up for the 2nd time this year. I had an endoscopy in May and it turns out I have a hiatal hernia -- meaning the top part of my stomach is poking through the diaphragm. It causes reflux, which I’ve had for many years. I guess it’s bad enough to be considered GERD. They prescribed me proton pump inhibitors before, but I never took them very long. Now, I have some bad changes in my esophogus -- Barrett’s esophogus, and that’s very serious. It scares me. And it’s terribly uncomfortable under my sternum and ribs sometimes. My GP sent me to the hospital’s ER room in an ambulance in February. It was ridiculous, but I was so stressed out. My nerves were shot and I just went along with it. I kept saying I was probably having panic attacks but also that there was definitely some discomfort in my chest, and it was difficult to breathe -- like I had too much guts pushing against my ribs. The ER cardiologist made me stay overnight even though the EKG showed nothing. He said they couldn’t do a stress test late at night. I was there for hours. So, my first hospital stay. Some old man was in the bed next to me -- moaning terribly. I felt awful ... up until he expressed his awful political views the next morning. Get me out of here. After that, I passed the stress (running) test. I passed a lung capacity test. I had my gallbladder scanned, and then they did the endoscopy. It was all too much and thank the gods I have health insurance. I paid, I don’t know, like nearly $2,000 out of pocket this year for all these tests and meds. I don’t make barely no money, honey. Can we just get it right the first time. i never said it was my heart or lungs, and I didn’t know anything about hiatal hernias. So... ugh. So, last week, I had this major discomfort again and acid burning like never before. I was freaking out terribly. My GP wrote me back and said to start taking Gaviscon. It made some difference but the ingredients say it has aluminum and magnesium in it. The aluminum sounds like a terrible thing to be drinking, but techincially, it did help in the emergency. The gastroenerologist said I should take Pantoparazole, and I put it off again -- they all have potentially negative side effects. But I started the Pantoparazole for a week and a half and it didn’t feel like it was doing much. When I finally got to see my GP, he basically just said to keep taking the Pantoparazole and Gaviscon until I could see the gastroenterologist for follow-up.  Then, he looked at my diabetes record. He said it looked good. I -- I don’t know why I told him, but I said, “I’m trying to get my A1C to be a little lower -- to 5.2.” He flipped out. He said it was a bad idea, they have studies that show it’s of no help and will put me at risk for deadly low blood sugar. He wanted to know what could possibly be steering me to this “alternative approach.” Kind of insulting, considering he just told me everything looked good. I told him about Dr. Richard Bernstein. He’d never heard of him. I tried to explain that there’s thousands of people online who do follow Bernstein and are doing much better than before -- through low-carb eating and proper medication. Well, my GP wasn’t having any of it. He looked at me like I was following some kind of quackery. He told me to tell the endocrinologist about what I’ve been doing. I just rolled my eyes. Does anyone know anything at this hospital? So, last week, I got this mysterious call from the endo saying I needed to return. I didn’t ask what it was about -- hoping it was a change of heart about the Tresiba. No. It was a consultation of “helpful ideas” for better management of my diabetes. What? I paid $30 co-pay for this? It went downhill immediately. 

They literally want me to stop using insulin so I won't have any hypoglycemic episodes. That’s crazy. I’m Type 1, with GAD65 antibodies as proof. I've never had any significant low blood sugar, thank my lucky stars. My A1C was 13, now it's 5.5. I say it's still a tad too high, they act like I'm trying to jump off the roof or something. I say I'm trying to avoid the many terrible diabetic complications that come from elevated glucose. They tell me I'm going to pass out in the street and get run over. They say I'm in an "extended honeymoon" and may not need insulin. i say, it mostly looks that way because I'm very strict about my health care. They simply cannot understand. They're insane -- backward conclusions. They want to put me on Type 2 prescription pills -- a DPP-4 inhibitor like Januvia -- in the hopes that it will preserve insulin producing beta cells. Um, no -- that will likely stimulate my beta cell to make more insulin, so then my immune system will focus on them more to wipe them out faster. So dumb! They have a computer system in front of them with a decade's worth of test results. And yet, somehow it's in doubt that I'm dependent on insulin? Dr. Bernstein only says DPP-4s are mildly useful for Type 2 diabetics and probably won’t serve any purpose for Type 1s. I only go to this clinic out of 25 years of inertia and convenience, but I think they are trying to kill me sometimes for being "non-compliant" -- aka doing way better than their other diabetic patients, who sadly must follow their terrible "standard" ADA advice. Really, what's wrong with this picture? I eat real food, not junky processed carbs; exercise my muscles; drink lots of water; test my glucose often; and am hyper-careful about how I take my shots. My weight is down 25 lbs, LDL down, HDL up, triglycerides down, glucose often in the low 80s (which is absolutely normal), and my blood pressure is "very good" he says. So, how do the figure I am doing all the wrong things? Beyond explanation. People online have repeated similar stories and warned me that it might be like this. Strangers on Facebook are more knowledgeable, experienced and supportive than a hospital full of doctors. Kooky stuff I never would've expected.

[living-with-vertigo]

“Keep your chin up,” she tells me.

Terribly confused at the moment with mixed signals. Been adding more Levemir over the past several weeks -- from 8 to 19 in about 5 weeks. Have 3 meters and they all say I'm over 100 almost all of the time. It's getting me down.

I had to work last weekend in the sun and heat, and couldn't last 2 hours because my glucose went up from 90-ish to 125 for no reason ... some reason that is not apparent. I drink water all day every day. I'm not dehydrated. But I felt like ill -- like I was gonna pass out, or have a heart attack or somethin. Got home on the subway and into the A/C, took a couple of days of sleeping to get recovered.

Tonight, I took 7 units, new needle, and glucose didn't come down much at all, so I went and worked out for half an hour -- jumping jacks, bench press and pull-ups. A genuine good workout... And half hour later working at my computer desk, my palms start sweating. Take a quick shower, just in case I have to head to the ER. An hour later, palms are still sweating. It's 73 deg. F in here. My temperature is normal. I'm not sick nor have an infection that I know of. Only other meds I take are occasional Claratin or Zyrtec. Maybe a baby aspirin or Tylenol or Naproxene.

I'm 1 year since diagnosed. A1C about 4 or 5 weeks ago was 6.0, but again, having trouble getting it to go down more. I eat low-moderate carbs -- maybe 60 - 80g/day, mostly from nuts or seeds and non-starchy veg, plus cheese and meat.

I know it doesn't sound like I'm terrifically out of control, but the need for insulin is rising and I'm not getting lower, I'm going higher each day. I know the "honeymoon" has a mind of it's own and beyond that, daily maintenance is unpredictable. I don't know what I'm saying or asking.... Just having a crap time with it -- with the inevitable, I guess. :/ 

I’ve been in a rotten, angry-depressed mood -- maybe hormones, maybe bipolar, maybe high glucose, maybe diet, maybe money woes, maybe old age, maybe I’m just a horrible, insufferable person. 

Tried to talk to my mom, my partner, my ex, and my friends about it. Nobody wants to hear it much. I must sound like “Wowzy, wowzy woo woo.” But I can’t help it. I’d listen to them tell me the same sad songs, and have in the past. It can’t be interesting to anyone who isn’t (or maybe even is) diabetic or having mood issues, to hear someone go on and on about it every day. 

I just want to be productive, and contributing to the world, and being healthy, and social and reaping the rewards that all of the world has waiting for me. But everything just frickin’ hurts some days. And the shots and tests and food restrictions .... There’s no good way to go about this, and then it just gets worse. Life just gets worse no matter what you do. I didn’t plan for this, I don’t have much of anything to fall back on. And everyone is just tired of dealing with me. I’d let them lean on me, but how much could I stand? I dunno. 

The world just feels like it doesn’t want me around much of the time lately, and I don’t seem to have any interest in the things that people get so excited about -- money, clothes, food, buying stuff, boasting, being tough and macho, being sexy, talking about sex and pretending all of the darn time that my life is so interesting and full of accomplishments. I’m not dumb, or unaccomplished. I’m just in pain, confused about the future, and unsure which way to turn and start walking. It’s no good right now. :(

[living-with-vertigo]

The Reason I prefer Levemir over Lantus

The end of this month marks my 1-year discovery of my diabetes discovery. 

I’ve been on insulin since June 2015. At first, it was just 5 units per day. Then it moved up to 8. At the end of August, I went to the beach with my in-laws. And, for some unknown reason, my Lantus needs dropped down to 4 for a couple of weeks. However, by March, the need for more insulin returned. I was at 19 units. I decided to split the medication, because it seemed like a lot to be injecting. I was quite worried at the time. 

I was worried for more reasons than that, though. I kept having incidences of dry mouth -- I mean, severe dry mouth. I would swallow over and over and there was no saliva to swallow. It was extremely scary. I also developed chest and back pain. And I developed severe stomach discomfort. The dry mouth and feeling of being overwhelmed has been occurring since October. I would also have severe cold spells.

The only medications I was taking throughout this has been Lantus, Vitamin D3, maybe an aspirin, naproxene or acetaminophen. 

In March, I felt so horrible, that I decided to go see another endocrinologist to get her opinion. She said that these feelings were not related to diabetes and probably had nothing to do with the medication. I asked if I could switch to the other main brand of insulin -- Levemir.

Well, Levemir is another long-acting insulin, but it doesn’t last as long as Lantus. It is 18-hours while Lantus is almost 24-hours. I had to take more Levemir and more often. I had trouble finding the right dosage. Finally, I settled on 8 units split between midnight and 9am. My glucose rose and came back down until I figure all of this out. I started at the beginning of April, and the expiration period is 42 days. I probably made it right around that point.

I didn’t think there was any difference between the two insulin brands as far as these symptoms. The Levemir seemed to be okay. No major problems. Acid reflux, but I was drinking a lot of Diet Pepsi, too. (More on this dangerous situation in a later post.) I used almost the whole pen, but it didn’t seem to be working too well anymore. So, I finally tossed it out.

Two days ago, I switched back to Lantus, just 2 units, then 2 more, and then 3 more yesterday afternoon. Midnight came around again and I just checked my sugar. It’s fine, 90-ish.

But I’m sitting here and I’m having the anxiety I had before where I feel like my throat is dry and closing up again. Like there’s no saliva to swallow. Now, I will say that I did notice that my throat feels like there’s something pushing on it when I’m in the car, too. While I’m driving. I tend to not sit up straight, a little hunched toward the wheel. And if I sit back in the seat, the lump-in-the-throat feeling mostly subsides. Well, I’m not in the car, and I’m having waves of dryness and anxiety again. Dry mouth isn’t even listed as a possible side effect of Lantus, which is weird.

So, I think it’s probably the Lantus causing this. I also taste/smell band-aids. People online all say that this is the smell of insulin, and some say they can taste it too after injecting. Some have said it is the preservative that causes this smell/taste. When I was driving last night, I had a weird taste in my mouth that alarmed me. Perhaps it was the Lantus kicking in again.

I’m writing this because I forgot. I did not remember what all of the symptoms were that I had before when I was using Lantus. I did not remember the severity. And I think -- I can’t be 100% sure about anything in my life anymore -- but I think that, now that I’m back on Lantus, that I’m having these same unpleasant feelings. I saw my original endocrinologist last week, and told him this series of events. He asked if the Levemir made any difference, and I said, “No, none at all.” I think I take that back now. I think there is indeed a big, big difference for me. 

I”m going to go back to Levemir tomorrow afternoon as this Lantus wears off. I don’t like the Lantus. I get weird tastes, weird feelings in my throat, and there’s questions about whether Lantus can exacerbate cancer over an extended period of time. So, this is a reminder to me: Don’t take Lantus, stick with Levemir, because Levemir is giving you less side effects.

I’m supposed to be out delivering my route again now, but I can’t. I don’t trust my health -- my nerves to get through it at the moment. God, I hate beling alone.

[living-with-vertigo]

Need More Food, Down In Mood, Pollenated Attitude

I must be having a mood cycle again. Can’t get anything done. I was feeling great 2 weeks ago, then cranky, and so now, this must be a bottom point. Really feel like I’m losing hope, and I hate that. There’s always room for hope. 

I should turn on some house music. 

Can’t tell you how much I love my animals. This is my baby girl. She sits in my lap or sleep on top of me every day. Sometimes, she will even crawl under the covers with me. It’s the sweetest thing. It took her 7 years to start doing that. When she first got here, she wouldn’t barely let us touch her. And then she would go an hide in the closet. But slowly, she has become a real sweetheart. Super affectionate. Trust takes a while to develop in relationships.

I sleep most of the day away. Allergies are killing me again. I hate the trees. They’re definitely trying to kill me every spring. It wasn’t so bad in March and half of April, but for the past 2 weeks, it’s been right back to the grogginess and lethargy and sleeping all darn day. One year, if I have years left, I will document this cycle. The news keeps saying it’s the worst pollen season ever. It must be. It’s raining, and they keep saying that will help with the pollen. It doesn’t actually seem to.

My gut is going back to being very annoyed with me. I didn’t eat much. I ate, but not a lot -- couple of eggs w/ some pepper and mushrooms, handful of nuts, couple of meatballs and some zucchini with spaghetti vodka sauce, and most of an orange. My glucose is a little higher. I took 4 units at midnight. I should be okay with that, but raising insulin at all scares the crap out of me.

We went grocery shopping on Saturday. The store is just 2 blocks away. I thought I was going to collapse.  So dizzy, and full of discomfort in my chest and back. I would’ve had a panic attack if my other half wasn’t there.

We’re fussing and fighting a lot this year. To the point of talking about breaking up. It’s awful. We need to move. We don’t like the noise and crowds outside. It’s threatening. And the bills just keep going up and up and up. 

And my in come keeps going down and down. Everybody knows I have a bad relationship with my job and my boss. Not because I want it to be that way, but it’s May and I still cannot get a W-2 out of him. I have had maybe 4 paychecks this year. I got 12 last year (out of 26 pay periods -- less than half). But I have health insurance. And believe me, I feel like bloody hell some times. I’ve had so many scans and test and visits to my Primary and Specialists. It costs hundreds of dollars just to see them -- without insurance, I’d be absolutely devastated.

My car almost broke down. Just a week before, I had said to my partner, “Do you think I’ll be needing some kind of maintenance on my car or something -- like sparkplugs?” And he replies, “Those don’t need replacing till after 100,000.” And I said, “Well, I just passed 100,000.” A week later, I get the car to the shop because it’s losing power when I step on the gas -- like it’s slipping or not getting enough fuel. And what do you know? Spark plugs and coils. $780. Oh my god -- my poor credit card.

Anywho, like I said. I’m probably feeling a low on the mood cycle so, let’s just hope I’m  in better shape tomorrow or the day after.

Oh, one more physical worry -- my back has been killing me since July. My sacroiliac specifically. I can barely roll over in the bed some days. It’s bothered me for years, but it’s been non-stop for nearly a year now. And so I look it up online and it says that there could be too much or too little movement in the joint, and maybe I have ankylosing spondalitis. I have no idea what that is, and I don’t want to know unless I have to. So, I ignore it. Then someone, maybe George Takei, posts something about ankylosing spondalitis on Facebook. So, of course I’m like, “Is this a sign?” Better go read about it. It’s a horrible auto-immune disease, mostly genetic, that usually occurs in men and usually in teens and 20-somethings, however it can happen in anyone at anytime. There’s a genetic test for 90% of people who’ll get it. One site said it’s like Type 1 diabetes -- you can have the predisposition, but something else has to trigger it. Just great. The thing about ankylosing spondalitis is that it causes inflammation in the sacroiliac and then in other parts of the body, too, back, hips, ribs, eyes, even the colon and heart. The repair process involves calcium building up in all of the bone joints, so then they become fused together as one bone without any flexibility. And most notably, the man becomes hunched over. It’s terribly painful and the person has problems breathing because of the posture and the rib cage stiffening. 

So, I did some stretches. Kind of arching my back and holding my hands up to the top of the doorway and arching like that. Can’t breathe when I do that. And then taking big deep breaths. All my rib bones hurt after doing that. My back feels a little better today, but who knows. I wrote to my Primary and threw the idea out there. We’ll see in time. I don’t want ankylosing spondalitis, and gods bless those who have to deal with it. But I do want to pinpoint what is happening to me. I’m 48+, I know I’m old, but I feel SOOOOOOOO OLD. It’s not right. 

UPDATE: Definitely cycling with the moods -- smelly hormones bleeding out of my armpits.

[living-with-vertigo]

Belly Up Next

My tum-tum wasn’t behaving very well this year. Actually, my whole torso has had serious issues since the big East Coast snowstorm of 2016. And I’ve been having throat problems since October. Geez, one thing after another....

So, off to the doctors -- a lot.

I cut my finger early in January, I don’t even remember how. But it wouldn’t stop bleeding, so I went to Urgent Care. Of course, it stopped JUST BEFORE I saw the doctor. She stuck a Steri-strip on it. But I asked for a tetanus shot booster, and she suggested a flu vaccine shot and also asked if I had a pneumonia vaccine yet, since diabetics can get pneumonia easily. I didn’t even know there was one. So, I said yes to all three. Man oh man, my arm hurt so bad the next day. And I got a small fever, too, which is very unusual for me. My temperature is usually a little low -- about 97.6 F.  The throat thing seems to be related to two things -- swallowing because of dry mouth, and also my posture. Like, when I lean forward in the car, it feels as if something is pushing against my throat. So annoying! Also, I’m getting more acid reflux than I have been in a year. I thought it was a thyroid thing and -- long story short -- I had an argument with an Urgent Care doctor. i regret it to some degree, but she wouldn’t run a couple of inexpensive thyroid tests for me. I didn’t know then, what I know now, which is that you can order your own tests online if need be, for many different conditions. It’s not possible in some nearby states because of legal issues, but here it is. I got the thyroid tests back and they were all normal, which is all I really wanted to know for sure. Diabetics often have thyroid issues, I’m told. My endo sent me for a  thyroid ultrasound. Not a comfortable experience, I must say. There was a cyst and a couple of nodules or vice versa, but nothing of any concern. My thyroid was not enlarged or anything else. So, okay, why the feeling like a lump in my throat? Mystery unsolved.

On January 23, I think it was, we had a huge snow storm clobber the city. And early that morning, I went out trudging through it. Normally, I don’t go out and walk much, but I was excited to take some pictures. (They didn’t really turn out all that spectacularly.) However, after a stop at my ex’s home, I thought I’d walk down to the city’s central landmarks, but before I got there, I felt something really odd. 

I started to get overwhelmed by the physicality of it all. The way it hit me was completely unexpected. And because there was a foot and a half of snow, everything was closed and no cabs or buses were running. So, very few people out on the street. Looking back it was a terrible, terrible idea to be out there. I had a total panic attack -- I mean total. I thought my heart would burst and I’d die in the cold snow. I even flagged down a vehicle or two. I stopped in a Holiday Inn and sat in the lobby for a long while to check my glucose (fine), and to calm down. My chest hurt. My heart was beating so fast. I thought I was going to suffocate in that winter coat. I had my backpack on and some water inside, so I drank it -- lots of if. Been carrying water because of the dry mouth. 

I got halfway home, but stopped in an Ace Hardware and sat on a stool there for like an hour to recover. The staff kept looking at me with concern/annoyance. It was really embarrassing. But I was seriously having a hard time of it. And my phone went dead. Wasn’t even my phone. Plus, did you know the iPhones die in the cold. Seriously, they just don’t even function when they get cold. Useless. Don’t think, “Oh, I’ll be fine in the cold -- I’ve got my iPhone charged.” Because it just shuts off and won’t come back on till it’s warm enough.

After I got home, I felt horrible. And was really concerned about what had just happened. A few days later, I gave in and went to Urgent Care. They did EKG and stuff, and the doctor man was really cool. But nothing unusual, which is good. I can’t even remember what he said. But I went for a follow up with my GP. I’ve had the same primary doctor for 20+ years, but we don’t have much of relationship beyond general recognition. I don’t recall if I saw him or someone else... it’s all a bit of a blur what happened. 

Alls I know, is that I ended up being taken by ambulance (1 block and $450) to the main hospital’s ER. My doctor said that would be faster for getting noticed. They did a lot of tests, and after several hours, I was told to stay the night so they could do a stress test first thing in the morning. It was a long night. The poor old man next to me was in a terrible state. It made me feel like I was wasting a lot of time and attention. The nurses were pretty good. They check blood pressure often. I must say, though, that not one of the doctors or nurses I saw through that experience wanted to believe that I could be Type 1 diabetic and diagnosed at my age. Seriously, virtually all of them doubted that an adult would come down with a new diagnosis of autoimmune diabetes. That was frustrating, but not surprising since I’d read other people’s stories saying the same thing.

The stress test came back fine. My all-night monitor was fine. I’m sure it cost thousands of dollars. Thank goodness my crap job has great insurance.

In February, I started to get stomach discomfort. It’s like the chest issue was moving lower. Or maybe it had been a stomach issue all along. Mostly it “hurts” under the upper right quadrant of my gut, just below the ribs. It’s not painful so much as discomfort. And it basically felt like my guts were pushing up against the bottom of my ribs all across. I was getting this horrible feeling a couple of times a day, and kept having to go to the toilet several times a day. I gave up cheese and nuts for a while, it may have helped. I can’t really tell. There’s not a lot I can eat on my new diabetic-friendly diet, so I have gone back to cheese and nuts. 

So, back to the GP. He sent me to see a gastroenterologist. She was really excellent -- very confident and seemed knowledgeable. She set me up for an endoscopy. And also wants a scan of my gallbladder. i suspected gallbladder the whole time. And it’s fascinating how the liver, gallbladder and pancreas all share the same tube -- the bile duct -- to produce enzymes and bile that break fat and food in your gut after it leaves the stomach. If the bile duct gets clogged by gallstones or sludge, there can be a very serious problem. And actor George Takei, fortunately or unfortunately, posted on Facebook a disturbing tale about a woman who had bile duct cancer for a while and went undiagnosed -- wrongly diagnosed -- for too long and died. Yikes! And immediately, an old family acquaintance posted on FB that her husband had come down with severe pancreatitis, possibly from a gallstone, and he was on a breathing tube and feeding tube and in critical care for weeks. Horrible.

Well, I got an appointment very quickly because of an endoscopy cancellation. The procedure went swimmingly, but they did find a couple of abnormalities that I hadn’t expected. 

Mild irregularity of the z line (the juncture between the esophagus and the stomach)

2 small gastric polyps (which are allegedly a rare thing to have)

gastric erythema (inflammation of the mucosal lining of the stomach)

a small hiatal hernia (which means the stomach is poking above the abdominal wall -- probably the source of my reflux)

They’ve taken biopsies, and now I just wait and hope it’s not precancerous, or that this is another autoimmune condition. Maybe it’s heliobacter pylori -- a common bacterial infection that is know to cause ulcers and other issues. I can only guess right now, so I better just back off and ease my mind for a while.

I posted this elsewhere, about the visit for the scoping exam:

Went in for an endoscopy today. I half-consciously put on my blue rubber "Type 1 diabetes" wristband when I left the house. I only wear it about half the time I go out -- extraneous sensory stuff tends to annoy me. But, I'm glad I wore it today. The check-in nurse asked about diabetes, and she jotted down what I said about being newish Type 1. I asked about whether I would be getting a glucose drip or not. She said she thought I would, and said I would need it. We had a little back and forth about concerns since I cut back on basal because I wasn't eating all day. I let it go since, literally, it won't kill me for a half-hour. She goes: "What's the highest you go when you eat and don't take insulin? [I don't know.] Well, then, I guess we'll find out today!" (Actually, they only put me on an electrolyte drip, so no glucose after all.)

Anyway, I put on the "gown" and put all my clothes in the plastic bag, and forgot to take off the wristband. A lot of nurses were there for me, plus an anesthesiologist. Even though the check-in nurse had written down notes about being diabetic, each one of the others looked down at my wrist and asked, "Oh, you're Type 1 diabetic?" The thingamabob I wear is subtle, so I didn't think anyone would even notice it. Worked like a charm, though.

It gave me a chance to have a few conversations about LADA, and inform them that it's not so rare as they kept alluding to -- that my mother-in-law has the same exact thing, and was even older at 62; that there's thousands of us online, etc. One nurse told me about her friend's daughter who just kept eating and eating nonstop, and they found out long later on that she was Type 1. I told her that, yes, that's exactly what I had been doing, too, for a few years. So, it's no fun going in to see a string of doctors lately, but in some way, I get to learn them back a little somethin, too. Maybe all my co-paying will help someone else run up against fewer doubtful reactions down the road.

[living-with-vertigo]

My Healthy Diabetic Diet

I have been having gut problems this year -- all of February and March I had a lot of discomfort up under the bottom of my ribs, like I had too much guts. I’m not thin by any measure, but I’ve lost nearly 30 pounds in 3 years. Down to about 172 lbs at 5′10-1/2″. That’s considered normal weight.

Sometimes I feel like it’s from my lingering flab folding at my ribs. Sometimes it’s like the fat cells are sensitive, even painful to touch. 

Other times, I’m concerned it’s my gallbladder. Or my bile duct is blocked with sludge or a stone. And it’s causing me pancreas problems. Of course, I have no way of knowing this without some kind of internal tests.

I went to my doctor several times. More than a few this year. I also have had overexertion problems where my heart beats fast and I feel like I’m going to have a heart attack. The area on both sides of my sternum will ache and feel like there’s pressure there. I have had more GERD / acid reflux lately than before. I also have had a lot of dry mouth issues. I wonder if it’s related to another autoimmune condition called Sjogren’s Syndrome. Healthcare websites say that people who have autoimmune conditions, usually have more than one.

I’m supposed to see a gastroenterologist tomorrow. My Primary Care Physician got me an appointment fairly quickly. 

Of course, my belly has been feeling mostly better in the past couple of weeks. Before that, I felt like I had to go to the emergency room every day. It was ... I don’t know how to describe it. Bloated but not gassy. Mostly just kind of irritated. It felt like the food was stopping at the top of my gut. Since that is where food both begins and ends in the digestive tract, I couldn’t tell you if it was discomfort from food going in or going out. 

Anyway, I thought I’d compile a list of foods that I eat each day on my lowered-carbohydrate diet. People argue endlessly online about what diabetics can and cannot eat. After doing some research in my first week, I quickly grew to like the plan espoused by Dr. Richard K. Bernstein -- a low-carb, high-protein, moderate vegetable and moderate fat diet that is used to keep glucose control tightly regulated. I think it works great, but I do eat carrots, nuts & seeds, and small amounts of spaghetti sauce. (I also eat processed meats, which are sadly full of nitrates -- going to give me Alzheimer’s and cancer.)

My friends and family worry that I’m not eating enough. Or not eating the right kinds of food. My doctors are even worse, every one of them insisting that I need to eat carbs -- “30 to 60g with every meal.” Um, no. Clearly, they are not diabetics themselves. There’s large communities of support groups online for diabetics, and they all have different approaches. There are some for low-carbers, too, but even among the Bernstein advocates, there’s wiggle room for individual tastes, beliefs and preferences. 

I challenge them as much as I think they can handle being challenged: “I eat vegetables, meat, cheese, salads, olives, and drink tons of water every day. I eat tons of food. I just don’t eat the carb-heavy food. It’s not good for me. It’s not good for anybody to eat sugar, starch, grain with sugar, processed foods stripped of fiber that spike your glucose sky high several times a day, and floods of fructose that get stored directly as fat in and around your internal organs. What do I need carbs for -- my brain? Ketones from fat will do, plus the carbs in veg and nuts. My weight is down, my cholesterol and triglycerides improved, my blood pressure is down. I’ve had multiple tests of my heart and lungs and everything comes back normal or good. Granted, i feel like crap a lot of days, but imagine what I’d feel like if I was still eating all that ‘healthy’ carbohydrate again and had glucose readings of 350 and an A1C of 13. I was soooo sick, and now I’m not sick -- just trying to figure out whatever else is going on at this point. I need less meds, and have few highs and almost no feelings of being low. So, why do I need carbs? I can live without them at this point.”

Anyway, here’s My Healthy Diabetic Food List:

Meat

Eggs

Chicken

Meatballs

Bacon

Sausage

Hamburger (without bun)

Turkey (Lunchmeat)

Ham (Lunchmeat)

Pepperoni

Dairy

Cheese

Alfredo Sauce

Soy / Meat Alternatives

Wheat protein sausages

Soy sausages

Soy burgers

Nuts & Seeds

Mixed Nuts

Pecans

Almonds

Cashews

Sunflower Seeds

Vegetables

Broccoli

Zucchini / Summer Squash

Green & Red Peppers

Spinach

Carrots

Tomatoes

Salad greens / Lettuce

Green Beans

Cauliflower

Celery

Mushrooms

Spaghetti Sauce (small amount)

Fruit

 Avocados

Olives (green / red)

[almost no high-fructose fruit]

Dressings

Ranch

Blue Cheese

Mayonnaise

Salsa (small amount)

[no sugary dressings]

Starchy Vegetables

[none]

Grains / Bread / Pasta / Rice

[none]

Beans / Legumes

[none]

Drinks

Water

Diet Pepsi (sucralose)

Sweets / Deserts

Sugar-Free Jello

Whipped cream (small amounts)

Rare / Uncommon Additions

Salmon

Shrimp

Sauerkraut

Yogurt (low-carb)

Sour Cream

Pork

Orange slices or Juice (when glucose feels a little low)

Vitamins / Minerals

Vitamin D3 – 6,000 IU/week

Multivitamin – 1/week

Medication

Levemir -- 3 units/night + 3 units/day (or)

Lantus -- 4 units/day

Exercise

Moderate walking

Moderate weightlifting

Moderate push-ups & pull-ups

[living-with-vertigo]

What happens when you see a Diabetes Educator?

Saw my first Diabetes Coordinators today. They were a bit disorganized, but friendly enough. I had an appointment last week, but they called and said their computers weren’t functioning (due to a ransomware attack), and we rescheduled to today. I called first and was told I had no appointment, so I just went there and they said they still couldn’t find an appointment for me in the system, so they set it up for me. I had to wait nearly an hour.

I mostly wanted to see actual pumps and CGMs. They said I wouldn't need a pump anytime soon since I'm in the honeymoon phase, but recommended a Dexcom. They had a few examples (in pieces) in a toolbox. Mostly, I got a lot of pamphlets from their overstuffed file cabinet, and I was told to contact the manufacturers for more info about each. I learned that pumps only use one type of insulin (not basal) and that you draw the insulin from a vial and put it into the pump. Also, the Dexcom transmitter is smaller than I thought, and the CGM sensor needles are longer than I thought (but they are flexible). They said Dexcom sensors last about a week and that I'd need to order from the company, not the pharmacy. They said the transmitter had a battery in it, and would last maybe 6 months. I think she meant the G4 version, not the newer G5. RE: Food -- They had a lot of plastic food models in boxes. But they thought I had enough knowledge about foods so that we didn't get down to that level. They brought out that same diagram of what a healthy plate should look like, and I just covered up the fruit, milk and potatoes with my hands. They had a better chart with about 8 lines of food groups, and I was like: "Line #1: Bread, grain cereal - no. Line #2: Peas, corn potatoes - no. Line #3 broccoli, spinach - yes.... Line #8: sweets - definitely no." 

They said, "You should eat carbs.... 30g carbs a meal, maybe 60g in your case." I might've been disappointed if they hadn't said it. I replied that I know of a few Type 1s and Type 2s who have different approaches to food, but always eat carbs daily, and I see them all having nerve complications now. And that it was believed among our online group that lowering carbs takes a person off the rollercoaster of highs and lows, and also lowers the need for insulin. They admitted that would be true, but insisted that carbs were the "fuel of the body" and I needed them for my brain and energy. I didn't bother explaining ketones to them. They asked if I felt like I needed energy, and I said that I felt like exercising more lately, more than before, but I'm 49 and everything aches at this point. They said they thought I was in my 20s. Dumbest thing they said was without carbs, I would be damaging my kidneys and heart. Oh, brother. I told them I eat carbs in vegetables and nuts, and that seemed like enough, and I read the food labels, and my cholesterol, triglycerides, weight and blood pressure were all much better than before. Not sure they believed me.

I asked how many Type 1s they dealt with. One of them said hardly andy -- mostly Type 2s. The other said she has been seeing a fair number, and it was increasing -- both young and LADA -- either from some environmental factor or because the city's population was steady increasing. I told them that I aim for 83, and they asked why. "Because that's 'normal.'" They said nondiabetics go above 100 when they eat, and I said, "But then they come right back down. Last week, I dared to drink a margarita and ate some chicken with a little BBQ sauce, and my glucose doubled -- up to 181." They said that was fine to do, that I must be bored with my food restrictions, that I might be psychologically compensating since I'm relatively new. I asked her what they considered a decent A1C, and she said, "Hmmm, 6 ... 6.5 maybe. Not in the 5s, not for a Type 1 -- too much possibility of going low." One of them said that they had studies that showed that people who have tight control do worse as they age. OMG, how do so many people get their hands on the same dumb info? I wanted to challenge them, and ask what percentage of their patients actually made it below 6.5. I was curious if anyone else ever said they ate lower-carbs, but I just let it go. They were nice enough. I'll leave it at that.

[living-with-vertigo]

I tried a different endo today

(Posted this on FB last week, but thought I’d repost here.)

I tried a different endo today... to get a "second opinion." I'm still relatively new to this. And have been going to the same university hospital for 20+ years, way before all this diabetic stuff occurred. I'm not entirely impressed with what they're saying really, but I have had nothing to compare. "You must eat carbs. 60g carbs each meal, A1C 6.5 if good safe number. We don't want you to go too low. Have you heard of Neal Barnard? ..." Yes, and I'm not really interested in any of what you're saying, docs. So, what might some other doctors say? Today's appt was at another major hospital in the city. (Sorry, this is long and dumb, but I'm learning.)

A nurse took my BP, glucose (97), and a blood sample for a quick A1C. The first doctor came in soon after, and she goes: "Well, I understand that you are here for diabetes. But your A1C is 5.4, so I don't think you have an issue. You are familiar with A1C?" And I was like, "I definitely am Type 1, I definitely need insulin, and I definitely had GAD antibodies." It just kind of went downhill from there....

I gave her my history of diagnosis (9 months ago) and that I started low-carbing from day 1; how I went from 13.2 A1C down to 6.3 in 3 months, and then got stuck at 6.2 and was not satisfied with that last year. But 5.4 today -- really? That's great! She was like, "Uh, 6.2 is great! 5.4 is low. Our standard is that 7 or below is acceptable."

She asked about insulin dosage, and I said, "I started at just 5, but my levels keep rising each month, so I add like 2 units per month. I'm around 19 units now." And the doctor asks, "And when did your other doctor tell you to increase it, to what dosage, when?" And I said, "He didn't. I increased it on my own based on what the meter says." And her eyes just about popped out of her head! No joke. "You start at 5, and you decide to increase -- on your own?! And you are at 5.4! Did you tell your doctor that you did this?" I mean, she was like guffawing at the incredulity. I told her, "Yes. He just said, 'Whatever it is you're doing, keep doing it.' And that was all he said." She asked how many units I took today. I said, "My stomach hasn't been feeling so hot, so I haven't been eating much. So, just 10 the past couple of days." She was absolutely not believing this conversation. "So you take less whenever you feel like it!? You decide?" She got confused about what I was telling her. I asked if she could just download from the glucometer. And she looked at it like: "Do what now? I don't know if we can --." Ugh. What year is this?

I told her I could log in to my medical record, if she liked, and she could see everything she needed -- about vitals and test results. And she looked so confused, "You can do that?" Oh, brother -- is this how other operations are run? Maybe better off where I was.

So, she goes out, and comes back with the head endo doctor there. And this next one, "I think what you have is LADA -- latent diabetes in adults." All right, good for her. Though we already know that. She continues, though, saying 5.4 is low and there's evidence that it can be worse to have an A1C at that level -- much worse. "What would you say if I showed you evidence that you can live a long and healthy live at 6.5? I'm a medical professional and I work with evidence. What's wrong with a 6.2?" And I said, "It's not *normal.* I would not be satisfied at 6.5. Today's 5.4 is good. And there's evidence that 6.5 can still lead to long-term complications, which I'm trying to avoid."

She finally got around to diet, "So, are you eating the 60 grams of carbs per meal?" NO! I eat low carb. Where do they get this cookie-cutter standard advice? At least she didn't say that was a terrible idea like my other doctors do. She said if I ate carbs, I'd need mealtime insulin, and then I'd be having more highs and lows. Wow, something we can agree on finally.

At the end, she said "You seem set in your mind what should happen, so you tell me what you want to happen here." She said flatly that her recommendation was that I take 10 units of Lantus, period. I said I was hoping to try Levemir to see if some of my other recent issues would go away. I've never taken any medication long-term before, and I'm having some mouth, throat and stomach issues. She said Levemir was fine, and ordered that I see a diabetes educator. Yay, progress ... but just who is going to be doing the educating there? Them or me?

She said she would have to note specifically in the record that she recommended 10 units, not 20. "If you go down to 60, you'll be in danger. You can pass out." And I was like, "I've never been at 60 yet, because I eat lower carb. If the meter shows that I don't need 20, why would I take 20 units? Dipping down to 60 would probably feel horrible. I'd be freaking out, of course. I'm still honeymooning. Things will get worse, I know, it already is progressing. 6.5 might be a dream goal someday. For now, what you said. I'm happy with that." So, stern warning noted. We didn't even get to the other issues.

To me, whatever my meter says 4 or 5 times a day -- what "the evidence" says -- that's how you adjust, right? It's never quite the same and every day's activities are different. I'm not encouraged by what I'm running into with these endos and other doctors. It's exactly what everyone online has said the doctors would say, what Dr. Bernstein says they'll say. "Higher than normal is fine. You shouldn't try to be near normal. It's dangerous...." When the lead endo was walking out of the office today, I asked her if she had any other Type 1s. she said: "You are the ONLY patient I have who wants to be at a 5.4! I admire your ambition. I think you should relax." I don't know if she was mocking me or trying to process something she never heard before. I left and the first doctor was looking at the web page with my record -- I don't think looking at my history so much as how the web page worked. I asked her to log out when she was done. Hah.

I'm glad I have these discussion boards to see all kinds of personal stories. I would be lost without y'all. So weird to be told that "doing good" is the wrong thing. If it really is 5.4 A1C today, I'm so thrilled! Exactly my goal. I worked so hard to get there. So stressed out over this process. I don't want to be discouraged, and I don't want anyone else to feel discouraged, you know. Whatever your dealing with, and whatever you set a reasonably healthy goal to be... good luck to us all, each and every day. If you've got a great endo, one who is supportive -- neither aloof nor needing to be controlling with "standard" advice, I am so happy for you!

[living-with-vertigo]

2016 - January Update: Vertigo still, More insulin

There’s a blizzard outside tonight. It’s supposed to be more than a foot of snow. The dog jumped his way through it, but he’s more than half-way deep in it right now. I don’t think it’s going to get to an historic 20-30 inches, like the weatherman claimed yesterday, so ... EVERYBODY CALM DOWN.

It’s a few weeks into January of the new year, and things have and have not changed with my health and wealth. 

As far as the vertigo, it’s driving me crazy this past couple of weeks. My eyes are bouncing around so bad, I can hardly focus on anything. And I feel like I’m always bowing my head down and looking up hard. Why, I don’t know, but it’s actually easier to see if I raise my head and look down -- not good for the back of the neck, though.

I must have forgotten how bad this vertigo can feel. It’s so bad that I’m blogging about it again today! But I definitely feel weak in the legs, and uncoordinated, and swaying and the eyes. The eyes, the eyes, the eyes! 

My right eye has this tick in the upper lid, that keeps jerking around, but my eyes also seem to have a nystagamus or something that is causing my vision to both wobble around and zoom in and out. Horrible. 

My eyes are also extremely irritated. I don’t know if it’s the dry air because the heat is always running, or I just have dry eyes (wondering about Sjogren’s Syndrome lately), or a new winter time allergy, or what. I got a $17 bottle of eye drops that are more like a gel than liquid. The stuff goops up on the outside of the eye and makes it look like I have lots of “sleep” crud around my eyes and in my lashes. I can’t say it’s working any better than the regular drops. If there’s one skill that I lack, it’s putting eye drops in. I’ve started looking in the mirror when I do it, and put the end of the dropper so it touches the lower side of the upper eyelashes. It goes on my eyeball better that way, but I wish I could just drop it in without thinking something bad is happening.  

I did the Eply maneuver, and it definitely went out of whack when I dropped my head back and turned to the left. So, still the left ear. Did it fix anything? I don’t think so. It couldn’t have hurt. When I tried it again, it was not nearly as wooziness-inducing. I just feel like the 2nd and 3rd parts of the maneuver don’t do anything for me. So, i cannot say, after all these years, if I have BPPV or not. 

I have definitely been grinding my teeth and my jaw hurts a lot. My teeth are nearly numb some days. And worst of all, my gums are still receding something terrible. So, is the vertigo a jaw problem? Yes, no, an additional element?

Then there’s the Type 1 diabetes. I continue to have the