You know, sometimes I get so lost in the way I perceive my own health problems that I forget how others must see it.
As a general rule, my health isn't a conscious thought. It's usually a fleeting perception, like "oh, my legs are really tired. I hope there's a Do Not Walk sign soon" or "gee, my heart is racing, my blood sugar must be high" (I know, it's a weird symptom). But I don't see myself as sick or disadvantaged.
And then, every once in a while, someone says something that makes me think about it. Or someone reacts with shock, surprise, or horror when I tell them something that, for me, is normal.
I had several experiences like that this week. But the weirdest one was this morning, after my history class.
My history professor made an announcement the first day of class that he doesn't allow laptops in his class because they're distracting (otherwise known as, students use the internet in class). We had a short discussion about how I really can't hand write notes, and that was the end of that. I did end up using a notebook for a few weeks while I waited for a new laptop battery (during which time I wrote stories, not notes). Other than that, my laptop has been my best friend and he has left me alone.
Last week, we had a handwritten quiz. He usually gives one multiple choice quiz per week, but last week was different. This week, he repeated it. To be honest, the quizzes were short, with today's having much less writing than last week's. (Also, last week my left wrist was bothering me, which didn't help the whole hand writing thing.)
I approached him after class about it. Honestly, I can take the quizzes. The pain doesn't last too long, the muscle fatigue doesn't last too long, and overall I'd rather be like everyone else than singled out. But if he gives every quiz like that for the rest of the semester, then I might have some problems. I asked him more out of curiosity than out of concern for my well-being.
His immediate response was, "I know it's hard for you to take these quizzes", practically before I could finish my sentence. He said we can work something out if it's too difficult.
My immediate answer to that is no. It still is, because I'd rather suffer for the ten minutes it takes to take the quiz than inconvenience him or myself. I don't like to be different. I don't like to be singled out. Maybe it's because the muscle issues have a greater potential to make things difficult in the long run than diabetes does. Maybe it's because the muscle stuff is less treatable. Maybe it's just because I hate the muscle issues more than I hate diabetes. But I don't want special treatment, even from myself.
On some levels, this is quite stupid. On a day when my finger joints hurt, I can barely type, let alone write. The fact that I have the opportunity to alleviate my discomfort should be appreciated, and it is, but I don't want to use it.
It's times like this that make me wonder what other people really think about me.
Last night, my very close friend's mother asked me if I can have ketchup if it's cooked in something (she used it to make some kind of stewed meat, and since it wasn't sweet, I'm guessing there wasn't much in it). She knew to leave out the pita and the potatoes, but she asked about the ketchup (and was horrified to learn that onions and carrots have carbs, too). It's extremely sweet of her to worry about something so simple, but how fragile does she think I am?
My sister doesn't like it when I go for a run without my phone (something I've never done, but considered once when I couldn't ind it). I think she's worried about lows. Again, very sweet, very considerate, and how fragile does she consider me to be?
My honors program director knows a lot about my family issues. As in, more than most people. But he knows almost nothing about my health issues. I missed one seminar for a doctor's appt (and I might still miss another one). He knows I've seen a lot of doctors, but he doesn't know why. He doesn't even know why I want to do my paper this semester on the mismanagement of and lack of education about type 2 diabetes. (Actually, he might know that I'm a diabetic, but it's not something we've ever talked about or even something I've ever alluded to.) He doesn't know a single thing about my muscle issues. In fact, the only health issue he knows about is my allergies, because I almost died in a Bio 1 lab when I was a freshman from a severe allergic reaction.
I'm an extremely open person. For the most part, people know about my health problems, and I'm usually okay with that. I don't know how people reconcile what I tell them with the seemingly healthy person sitting in front of them. I don't know what my fellow pre-meds think when I tell them. In general, pre-meds are a healthy bunch, because it's physically demanding to even just be pre-med. I know one other pre-med in my school with major issues. She and I are, according to us, the two least healthy (and probably the two most well-versed) pre-meds in the whole school.
In a way, it's pretty stupid to be so worried about what people think of me. I do everything I can for people to think I'm capable. Sometimes I push myself too hard because of that. But I don't want anyone to think I'm not capable because of the stuff I live with. I don't want myself to feel incapable.
This is a topic that has always interested me, yet I feel completely uncomfortable with the notion that others see me as damaged or disabled or something to worry about. And I don't have an answer.
"Am I the fool/ Am I a victim/ I'd rather know" ~Faber Drive
Thursday, October 31, 2013
Saturday, October 26, 2013
The Healthcare Problem
When I was three years old, I decided I wanted to be a surgeon. I made my mother get me an anatomy book, and long before I could read it myself, I studied it. My mother read it to me at night, sitting in our recliner with me in her lap. This blond haired, tiny, precocious girl didn't want anything to stop her.
I spent my ENTIRE elementary school life talking about it. I spent a ridiculous amount of time reading a thick, so-heavy-I-couldn't-hold-it book of common childhood diseases. (I literally had to lay my head next to the book on the couch so I could read it.) When we dissected frogs in the seventh grade, I was the only girl who didn't pair off with someone (mostly because they didn't like me), and I was thrilled to get the whole frog to myself.
When I finished my first year of college, I was asked by a local girl's high school to dissect a frog and a sheep's heart. I did so gladly, for a group of six very interested freshman and sophomore girls.
This is the only thing I have ever wanted to do. Though I've vaguely considered other things (teaching math and science, becoming a writer, musician, other things that could never happen), none of them have ever been serious considerations.
No one ever told me I'd have to take the MCAT or that getting into med school is damn near impossible. No one ever told me there was an extremely good chance I'd never get in. Until I got to college, I had never dreamed that my life-long obsession could be shot down with a simple "no."
Allow me to explain something about being pre-med. You have to take a year of chemistry, a year of biology, a year of physics, and a year of organic chemistry. Just short of none of this stuff is actually important for medical school, but it's still required.
So say that 60% of all incoming freshman (at my school it's waaay more) are pre-med. After chem and bio, it's down to 50%. After organic, it's 15%. If you survived organic but couldn't make it through physics, there's something seriously wrong with you. (No, not really, but really, organic is SO much worse...to everyone except me.)
So we've cut out 3/4 of the students who want to be doctors. Some of them may have done well in medical school, but many were probably not motivated or smart enough.
What's left is a group of highly motivated, crazy-smart, sometimes just plain crazy undergrads, dying for a chance to go to medical school.
Of them, how many have wanted to only be doctors?
I'm not sure of the answer, but I know that most of them don't care about the patients. From what I've seen, most of them just want the prestige of having M.D. at the end of their names. Some think they'll make a ton of money working as plastic surgeons in Beverly Hills. Maybe they will. But the compassion isn't there.
(Supposedly there's a class in the first year of medical school about compassion. I don't see how you can teach compassion.)
I'm not saying I'm the only qualified medical student candidate I know. That simply isn't true. But the vast majority of pre-med students just don't care about the patients.
Which, of course, was how I got to see something like ten doctors before someone was willing to sit down and explain that my joint and muscle pain are not all in my head. It's how I got to see a pediatric endocrinologist who insisted there was nothing wrong with my blood sugar. It's how I got to see a dermatologist who gave me an antifungal shampoo for eczema on my scalp. It's how I got to see an allergist who refused to give me an epi-pen for a nut allergy (and I almost died of anaphylactic shock six months later). It's how I got to see a pulmonologist who insists there's nothing wrong with my breathing, even though when I started to see her, I literally couldn't finish a sentence.
And it makes me wonder if medical schools are doing the right thing when they pick us based mostly (or solely) on academics.
The best doctors aren't the ones who got an A+ in Orgo. The best doctors aren't the ones who got a 45 on their MCATs. The best doctors aren't even the ones who graduated at the tops of their med school classes or got the best residencies and fellowships.
The best doctors are the ones who care enough to give a damn. They're the endocrinologists (without diabetes) who try on the OmniPod (when it first comes out) and all the pen needles so they know what to tell their patients. They're the (very, very nice) M.D. at Montefiore who had the EMG done on him first so he'd understand why patients ask him to stop. They're the doctors who run around and then breathe through a straw so they know what asthma feels like.
There aren't very many of these anymore. And though compassion can be made up for with diagnostic skills (assuming they have basic bedside manner), most doctors don't have this, either.
Now you're probably wondering why I want to go into a profession as cold and heartless as medicine, with the good sprinkled in like cookie dough bits in the larger ice cream. (Because there's usually so little cookie dough that you're surprised when you actually find one in-between all the bites of only vanilla, right?)
I want to be that endocrinologist who sits in with the parents of a newly diagnosed child and tells them that it's not going to be easy, but that it WILL be okay. I want to be that doctor who can tell the fifteen-year-old girl that I know exactly what it feels like to be excluded from the birthday party stuff because you can only have cake OR ice cream OR pizza, but not all three. I want to be that doctor who has been low during a college interview (and then went on the train afterwards and nearly fainted into the subway tracks and STILL has not told her father about it To. This. Day.) and can tell her patient that sometimes you get accepted to the program, anyway.
There is so much more to being a doctor than prescriptions and terrible handwriting. I have both the compassion and the people skills to help, maybe even make a difference in some patient's lives. The medical schools won't know it until I'm there, but I'm not one of those people who gets A's in everything but can't look you in the eye. (No, I don't get A's in everything...I kinda wish I did, though.) I just hope they can look past some of my lower grades and know that there's more to people (and me) than just the grades. I'm hoping they see me, not the number of B's I've gotten.
Maybe one of them will see the potential I hold. Medical stuff sticks in my brain. Physics? Not so much. But that won't make me a terrible doctor or even a mediocre one. My endocrinologist thinks I'll make a wonderful doctor, no matter what my grades are. I hope they can see that, too.
So yes, I'm applying to medical school now. I need all the luck I can get, and I can only hope that someone will look at me and say, "Yes, I think you'll do wonderfully here."
That, and now I want cookie dough ice cream.
I spent my ENTIRE elementary school life talking about it. I spent a ridiculous amount of time reading a thick, so-heavy-I-couldn't-hold-it book of common childhood diseases. (I literally had to lay my head next to the book on the couch so I could read it.) When we dissected frogs in the seventh grade, I was the only girl who didn't pair off with someone (mostly because they didn't like me), and I was thrilled to get the whole frog to myself.
When I finished my first year of college, I was asked by a local girl's high school to dissect a frog and a sheep's heart. I did so gladly, for a group of six very interested freshman and sophomore girls.
This is the only thing I have ever wanted to do. Though I've vaguely considered other things (teaching math and science, becoming a writer, musician, other things that could never happen), none of them have ever been serious considerations.
No one ever told me I'd have to take the MCAT or that getting into med school is damn near impossible. No one ever told me there was an extremely good chance I'd never get in. Until I got to college, I had never dreamed that my life-long obsession could be shot down with a simple "no."
Allow me to explain something about being pre-med. You have to take a year of chemistry, a year of biology, a year of physics, and a year of organic chemistry. Just short of none of this stuff is actually important for medical school, but it's still required.
So say that 60% of all incoming freshman (at my school it's waaay more) are pre-med. After chem and bio, it's down to 50%. After organic, it's 15%. If you survived organic but couldn't make it through physics, there's something seriously wrong with you. (No, not really, but really, organic is SO much worse...to everyone except me.)
So we've cut out 3/4 of the students who want to be doctors. Some of them may have done well in medical school, but many were probably not motivated or smart enough.
What's left is a group of highly motivated, crazy-smart, sometimes just plain crazy undergrads, dying for a chance to go to medical school.
Of them, how many have wanted to only be doctors?
I'm not sure of the answer, but I know that most of them don't care about the patients. From what I've seen, most of them just want the prestige of having M.D. at the end of their names. Some think they'll make a ton of money working as plastic surgeons in Beverly Hills. Maybe they will. But the compassion isn't there.
(Supposedly there's a class in the first year of medical school about compassion. I don't see how you can teach compassion.)
I'm not saying I'm the only qualified medical student candidate I know. That simply isn't true. But the vast majority of pre-med students just don't care about the patients.
Which, of course, was how I got to see something like ten doctors before someone was willing to sit down and explain that my joint and muscle pain are not all in my head. It's how I got to see a pediatric endocrinologist who insisted there was nothing wrong with my blood sugar. It's how I got to see a dermatologist who gave me an antifungal shampoo for eczema on my scalp. It's how I got to see an allergist who refused to give me an epi-pen for a nut allergy (and I almost died of anaphylactic shock six months later). It's how I got to see a pulmonologist who insists there's nothing wrong with my breathing, even though when I started to see her, I literally couldn't finish a sentence.
And it makes me wonder if medical schools are doing the right thing when they pick us based mostly (or solely) on academics.
The best doctors aren't the ones who got an A+ in Orgo. The best doctors aren't the ones who got a 45 on their MCATs. The best doctors aren't even the ones who graduated at the tops of their med school classes or got the best residencies and fellowships.
The best doctors are the ones who care enough to give a damn. They're the endocrinologists (without diabetes) who try on the OmniPod (when it first comes out) and all the pen needles so they know what to tell their patients. They're the (very, very nice) M.D. at Montefiore who had the EMG done on him first so he'd understand why patients ask him to stop. They're the doctors who run around and then breathe through a straw so they know what asthma feels like.
There aren't very many of these anymore. And though compassion can be made up for with diagnostic skills (assuming they have basic bedside manner), most doctors don't have this, either.
Now you're probably wondering why I want to go into a profession as cold and heartless as medicine, with the good sprinkled in like cookie dough bits in the larger ice cream. (Because there's usually so little cookie dough that you're surprised when you actually find one in-between all the bites of only vanilla, right?)
I want to be that endocrinologist who sits in with the parents of a newly diagnosed child and tells them that it's not going to be easy, but that it WILL be okay. I want to be that doctor who can tell the fifteen-year-old girl that I know exactly what it feels like to be excluded from the birthday party stuff because you can only have cake OR ice cream OR pizza, but not all three. I want to be that doctor who has been low during a college interview (and then went on the train afterwards and nearly fainted into the subway tracks and STILL has not told her father about it To. This. Day.) and can tell her patient that sometimes you get accepted to the program, anyway.
There is so much more to being a doctor than prescriptions and terrible handwriting. I have both the compassion and the people skills to help, maybe even make a difference in some patient's lives. The medical schools won't know it until I'm there, but I'm not one of those people who gets A's in everything but can't look you in the eye. (No, I don't get A's in everything...I kinda wish I did, though.) I just hope they can look past some of my lower grades and know that there's more to people (and me) than just the grades. I'm hoping they see me, not the number of B's I've gotten.
Maybe one of them will see the potential I hold. Medical stuff sticks in my brain. Physics? Not so much. But that won't make me a terrible doctor or even a mediocre one. My endocrinologist thinks I'll make a wonderful doctor, no matter what my grades are. I hope they can see that, too.
So yes, I'm applying to medical school now. I need all the luck I can get, and I can only hope that someone will look at me and say, "Yes, I think you'll do wonderfully here."
That, and now I want cookie dough ice cream.
Saturday, October 19, 2013
After the Endocrinologist
Okay. I feel so much better now.
I made a deal with my father on Friday on the way to the appt that he didn't get to be in there when I had my appt. To my shock, he agreed to leave when I discussed things I didn't want him to hear (everything?).
So my father's appt went first. It took all of five minutes. And then my endo kicked my father out and sat down in the chair next to me.
We talked a bit, then I told him I can't take Metformin anymore. He took my BP, then went to his computer and asked why. So I explained it to him. And he said I absolutely shouldn't take it anymore. When I brought up the B12 deficiency, he said he didn't even have to test me to know I have one. I asked him to test me anyway because I already have tingling issues and I want to make sure it's the B12, not those getting worse. He agreed. (His view is that as long as he's drawing blood, he might as well draw more.)
He offered me Precose, which I refused because I don't have a phase 1 insulin response (the initial, immediate surge of insulin you get when you eat. It lasts for about a half hour, until your pancreas makes more. I don't have this built-up store, and my body doesn't make enough insulin (or use it productively enough) to cover the rest of it. So I get stuck with a high blood sugar very quickly, and it doesn't go down for a while. Precose doesn't help this issue). He didn't argue with me, just thought.
I told him that I'm terrified of the other diabetes meds. Some, like the sulfonylureas, can cause beta cell burnout. His response was, "I wouldn't put you on a sulfonylurea--you'd be dead" (presumably of low blood sugar).
So he then said he had a brilliant idea and popped up to get me a sample. He came back with four bottles (21 pills each) of a drug called Cycloset. It's really used for pituitary tumors (to control the symptoms), but it's approved for T2 in low doses.
He explained that the working dose is 2-6 pills per day, all taken in the morning with breakfast. It has virtually no side effects (or at least none for me, since I'm not on any other meds), except for some mild nausea when first starting. I start with one pill, go up to two after a week, and then stay there for a couple of weeks and call him.
He gave me so much because he wants to make sure it works for me before he prescribes it. He knows that Metformin wasn't great at controlling my BG, anyway, so I think he's trying to circumvent that. (Actually, now that I think of it, he always gives me tons of samples. I guess he's worried that these things won't work for me.)
For the time being, I haven't had any real nausea (I had some this morning, but I really think that was because I was expecting to have it). The Metformin hasn't left my body yet, so I can't tell you if it works or not.
I then asked him if I really have insulin resistance. Based on my negative antibody tests and a couple of high c-peptides I had about a year ago, he said yes. He said that IR isn't based on body type nearly as much as the media makes it sound, and that in my case it's extremely genetic. (He also was shocked at my weight. He thinks I'm nearly 20 pounds lighter than the scale says I am. HA!) I asked because of my age, not my weight, but I guess I'll ask him about MODY when I talk to him about the Cycloset.
I asked him some other questions about my health, most notably the use of CoQ10 for my fibromyalgia (he said there's no reason why not), and why running helps my breathing so much. He said a pulmonologist should test my breathing before I run, and then again about a day later. Mine will never do that, but the one he gave me the name of might.
Overall, I'm very happy with how this appt went. He spent nearly a half hour with me (he's always willing to spend more time if necessary, but it's always nice when he does). He answered all of my questions honestly and in a completely straightforward way. He was kind, gentle, and listened. I think if I asked him to put me on insulin, he'd probably give me the same answer he gave me about sulfonylureas, but if Cycloset works, then I don't really care yet.
Now I just have to wait for the rheumatologist to get an opening earlier than the end of November. Yay?
I made a deal with my father on Friday on the way to the appt that he didn't get to be in there when I had my appt. To my shock, he agreed to leave when I discussed things I didn't want him to hear (everything?).
So my father's appt went first. It took all of five minutes. And then my endo kicked my father out and sat down in the chair next to me.
We talked a bit, then I told him I can't take Metformin anymore. He took my BP, then went to his computer and asked why. So I explained it to him. And he said I absolutely shouldn't take it anymore. When I brought up the B12 deficiency, he said he didn't even have to test me to know I have one. I asked him to test me anyway because I already have tingling issues and I want to make sure it's the B12, not those getting worse. He agreed. (His view is that as long as he's drawing blood, he might as well draw more.)
He offered me Precose, which I refused because I don't have a phase 1 insulin response (the initial, immediate surge of insulin you get when you eat. It lasts for about a half hour, until your pancreas makes more. I don't have this built-up store, and my body doesn't make enough insulin (or use it productively enough) to cover the rest of it. So I get stuck with a high blood sugar very quickly, and it doesn't go down for a while. Precose doesn't help this issue). He didn't argue with me, just thought.
I told him that I'm terrified of the other diabetes meds. Some, like the sulfonylureas, can cause beta cell burnout. His response was, "I wouldn't put you on a sulfonylurea--you'd be dead" (presumably of low blood sugar).
So he then said he had a brilliant idea and popped up to get me a sample. He came back with four bottles (21 pills each) of a drug called Cycloset. It's really used for pituitary tumors (to control the symptoms), but it's approved for T2 in low doses.
He explained that the working dose is 2-6 pills per day, all taken in the morning with breakfast. It has virtually no side effects (or at least none for me, since I'm not on any other meds), except for some mild nausea when first starting. I start with one pill, go up to two after a week, and then stay there for a couple of weeks and call him.
He gave me so much because he wants to make sure it works for me before he prescribes it. He knows that Metformin wasn't great at controlling my BG, anyway, so I think he's trying to circumvent that. (Actually, now that I think of it, he always gives me tons of samples. I guess he's worried that these things won't work for me.)
For the time being, I haven't had any real nausea (I had some this morning, but I really think that was because I was expecting to have it). The Metformin hasn't left my body yet, so I can't tell you if it works or not.
I then asked him if I really have insulin resistance. Based on my negative antibody tests and a couple of high c-peptides I had about a year ago, he said yes. He said that IR isn't based on body type nearly as much as the media makes it sound, and that in my case it's extremely genetic. (He also was shocked at my weight. He thinks I'm nearly 20 pounds lighter than the scale says I am. HA!) I asked because of my age, not my weight, but I guess I'll ask him about MODY when I talk to him about the Cycloset.
I asked him some other questions about my health, most notably the use of CoQ10 for my fibromyalgia (he said there's no reason why not), and why running helps my breathing so much. He said a pulmonologist should test my breathing before I run, and then again about a day later. Mine will never do that, but the one he gave me the name of might.
Overall, I'm very happy with how this appt went. He spent nearly a half hour with me (he's always willing to spend more time if necessary, but it's always nice when he does). He answered all of my questions honestly and in a completely straightforward way. He was kind, gentle, and listened. I think if I asked him to put me on insulin, he'd probably give me the same answer he gave me about sulfonylureas, but if Cycloset works, then I don't really care yet.
Now I just have to wait for the rheumatologist to get an opening earlier than the end of November. Yay?
Saturday, October 12, 2013
Planning for the Upcoming
For the first three or so years, I looked forward to endocrinologist appts. I loved going to see him--he was fun to talk to, a good listener, and it felt great speaking with someone on my scientific level or higher (I'm the only academic in a non-academic family).
Then I started having consistent highs. Not the occasional only-before-my-period ones I'd had almost since he gave me a meter, but constant I-can't-eat-anything highs that knocked me out several times a week and disrupted my life.
And that's when it started. When I realized that there was more going on than he would acknowledge. That was when I started dreading the appointments.
I hate it when my problems (and their absurdities) aren't acknowledged. But I think I'm beginning to hate being mistreated more.
He knows that it makes no sense for me to be a type 2 diabetic. Hell, he knows that pre-diabetic shouldn't apply to me. He KNOWS there's stuff going on.
There was one night that he called me back at 11 PM after I'd left a message for him that morning. During that phone call, I asked him if I was the only one who thought it was weird that I needed my Metformin dose upped just weeks after going on it. (To be fair, he was titrating me up, but I don't think he expected me to need 1,000 mg or, later, 1,500 mg, per day.) And he replied that it's very weird, and have I ever heard of a type of diabetes called MODY.
There are tears in my eyes as I type this.
I've tested negative for type 1 twice--most recently in June. My father has followed the same bizarre blood sugar trajectory that I have. MODY makes sense. It makes a LOT more sense than T2.
There is such a thing as a thin T2. There is such a thing as a young T2. There is no such thing as a T2 teenager who is all of eight pounds overweight (and, if it weren't for certain extra muscle in a place I don't want it, I wouldn't be overweight at all). Most of my fat isn't even in my stomach area. I walk a minimum of two miles a day several days a week (it's usually more). I don't eat only veggies and fruits, but I don't eat too badly. I've been trying to run. T2 just doesn't sound right.
The ONLY thing going for the T2 diagnosis is the high c-peptide I had for a couple of months that went away on its own (or with Metformin). I can think of two or three bizarre but possible things that could cause that and my diabetes.
Lately I've been on Metformin 1,500 mg. I hate it. On 1,500 mg a day, my stomach hurts almost all the time, I have frequent, terrible heart burn, occasional nausea, and...other unpleasantness that makes me wonder where the nearest bathroom is just in case All. The. Time. I can't take 1,500 mg.
So I switched back to 1,000 per day. I feel SO much better that it's almost ridiculous. But my blood sugar is already freaking out about that. I don't even want to think about what it'll be like when the rest of the 1,500 leaves my system in a few weeks.
Here's the thing, though. I don't want to go on any of the other pills.
Most of them have lovely side effects. Some of them (like Januvia) have been proven to cause higher rates of pancreatic cancer. Actually, it was suggested about a year ago that Januvia actually has higher rates of ALL cancers to its name. (I don't know if that ended up being true or not, but it's still scary.) An entire CLASS of drugs apparently causes the patient's body to "run out" of insulin several years into treatment.
I am not a lab rat.
Even without the side effects, I can't do this. I can't handle repeatedly changing dosages and meds. It's my personal, rather strong, feeling that I will switch meds more and more until I end up on insulin.
And that makes me think, what's the point?
Why am I going crazy over meds that may or may not work, may or may not kill me, when there's one, very obvious, alternative?
Insulin is, obviously, natural. Its only real side effect is hypoglycemia. It's guaranteed to work.
I'm not belittling hypoglycemia or even insulin itself. Insulin is an extremely powerful tool, which therefore has a lot of room for mistakes and problems. A little too much can lead to severe hypoglycemia, a little too little can lead to highs.
Unlike most patients who start on pills, I'm not afraid of insulin. I spent years chasing lows before my blood sugar turned completely upside down. I often had weeks where I had multiple lows in the 50's. I was almost always low when I came home from school (a mile's walk will do that, I guess). I still keep sugar with me everywhere because I know I can go low, even though I don't really anymore.
Let's say I have a healthy respect of insulin.
My preference for insulin also probably has something to do with how sure I am that I don't have T2. Very early onset LADA or MODY, I don't care--but I'd choose insulin for both of them, anyway.
I'm seeing my endocrinologist on Friday. And because of all of this, I'm terrified.
He doesn't like meds. The fact that I got Metformin from him was a miracle. I MUST get off that med.
In the past, he recommended a different drug that I don't foresee helping at all. I get the feeling he'll try recommending it again. We need to have a serious talk about what meds I will or won't take, as well as what he believes I might have. (Like that's going to get me anywhere.)
Of course, all of this needs to take place without my father in the room, which won't be easy. (We usually have dual appts, which works fine for time issues but doesn't work well when I have a serious issue I need to broach--I don't want to bring this up in front of my father.) My father believes he has a right to be in there. Maybe he did--when I first started seeing him at 16. And I don't mind having him in there usually. I do for Friday.
And no matter how much I try to pretend I'm not nervous, it's obvious I'm terrified. I've woken up grinding my teeth so many times in the last week that I'm surprised I've gotten any sleep (or have any teeth left). I can hardly concentrate, and the only thing I want to do is listen to really loud music.
The best part? I don't know anyone in real life who gets it. This is the only place I can really vent or even TALK about all this stuff.
I'm so sure he won't listen. I'm so sure he'll brush off my fear of these meds. I'm so sure he'll brush off the T2/MODY/LADA debate. I love him because he's so knowledgeable and helpful and sweet--but is it really worth it? Is it worth keeping a doctor I know is giving me a hard time? A doctor whose appointments I dread? (Though honestly, I hate all doctors appts at this point. If I never see another doctor, it will be too late.)
I might be back here before I see him to rant some more, I might not. But at least I know there are one or two people listening.
"Underneath my skin is it/ Just anger just frustration/ Underneath my skin is it/ Just nothing all these feelings" ~Faber Drive
Then I started having consistent highs. Not the occasional only-before-my-period ones I'd had almost since he gave me a meter, but constant I-can't-eat-anything highs that knocked me out several times a week and disrupted my life.
And that's when it started. When I realized that there was more going on than he would acknowledge. That was when I started dreading the appointments.
I hate it when my problems (and their absurdities) aren't acknowledged. But I think I'm beginning to hate being mistreated more.
He knows that it makes no sense for me to be a type 2 diabetic. Hell, he knows that pre-diabetic shouldn't apply to me. He KNOWS there's stuff going on.
There was one night that he called me back at 11 PM after I'd left a message for him that morning. During that phone call, I asked him if I was the only one who thought it was weird that I needed my Metformin dose upped just weeks after going on it. (To be fair, he was titrating me up, but I don't think he expected me to need 1,000 mg or, later, 1,500 mg, per day.) And he replied that it's very weird, and have I ever heard of a type of diabetes called MODY.
There are tears in my eyes as I type this.
I've tested negative for type 1 twice--most recently in June. My father has followed the same bizarre blood sugar trajectory that I have. MODY makes sense. It makes a LOT more sense than T2.
There is such a thing as a thin T2. There is such a thing as a young T2. There is no such thing as a T2 teenager who is all of eight pounds overweight (and, if it weren't for certain extra muscle in a place I don't want it, I wouldn't be overweight at all). Most of my fat isn't even in my stomach area. I walk a minimum of two miles a day several days a week (it's usually more). I don't eat only veggies and fruits, but I don't eat too badly. I've been trying to run. T2 just doesn't sound right.
The ONLY thing going for the T2 diagnosis is the high c-peptide I had for a couple of months that went away on its own (or with Metformin). I can think of two or three bizarre but possible things that could cause that and my diabetes.
Lately I've been on Metformin 1,500 mg. I hate it. On 1,500 mg a day, my stomach hurts almost all the time, I have frequent, terrible heart burn, occasional nausea, and...other unpleasantness that makes me wonder where the nearest bathroom is just in case All. The. Time. I can't take 1,500 mg.
So I switched back to 1,000 per day. I feel SO much better that it's almost ridiculous. But my blood sugar is already freaking out about that. I don't even want to think about what it'll be like when the rest of the 1,500 leaves my system in a few weeks.
Here's the thing, though. I don't want to go on any of the other pills.
Most of them have lovely side effects. Some of them (like Januvia) have been proven to cause higher rates of pancreatic cancer. Actually, it was suggested about a year ago that Januvia actually has higher rates of ALL cancers to its name. (I don't know if that ended up being true or not, but it's still scary.) An entire CLASS of drugs apparently causes the patient's body to "run out" of insulin several years into treatment.
I am not a lab rat.
Even without the side effects, I can't do this. I can't handle repeatedly changing dosages and meds. It's my personal, rather strong, feeling that I will switch meds more and more until I end up on insulin.
And that makes me think, what's the point?
Why am I going crazy over meds that may or may not work, may or may not kill me, when there's one, very obvious, alternative?
Insulin is, obviously, natural. Its only real side effect is hypoglycemia. It's guaranteed to work.
I'm not belittling hypoglycemia or even insulin itself. Insulin is an extremely powerful tool, which therefore has a lot of room for mistakes and problems. A little too much can lead to severe hypoglycemia, a little too little can lead to highs.
Unlike most patients who start on pills, I'm not afraid of insulin. I spent years chasing lows before my blood sugar turned completely upside down. I often had weeks where I had multiple lows in the 50's. I was almost always low when I came home from school (a mile's walk will do that, I guess). I still keep sugar with me everywhere because I know I can go low, even though I don't really anymore.
Let's say I have a healthy respect of insulin.
My preference for insulin also probably has something to do with how sure I am that I don't have T2. Very early onset LADA or MODY, I don't care--but I'd choose insulin for both of them, anyway.
I'm seeing my endocrinologist on Friday. And because of all of this, I'm terrified.
He doesn't like meds. The fact that I got Metformin from him was a miracle. I MUST get off that med.
In the past, he recommended a different drug that I don't foresee helping at all. I get the feeling he'll try recommending it again. We need to have a serious talk about what meds I will or won't take, as well as what he believes I might have. (Like that's going to get me anywhere.)
Of course, all of this needs to take place without my father in the room, which won't be easy. (We usually have dual appts, which works fine for time issues but doesn't work well when I have a serious issue I need to broach--I don't want to bring this up in front of my father.) My father believes he has a right to be in there. Maybe he did--when I first started seeing him at 16. And I don't mind having him in there usually. I do for Friday.
And no matter how much I try to pretend I'm not nervous, it's obvious I'm terrified. I've woken up grinding my teeth so many times in the last week that I'm surprised I've gotten any sleep (or have any teeth left). I can hardly concentrate, and the only thing I want to do is listen to really loud music.
The best part? I don't know anyone in real life who gets it. This is the only place I can really vent or even TALK about all this stuff.
I'm so sure he won't listen. I'm so sure he'll brush off my fear of these meds. I'm so sure he'll brush off the T2/MODY/LADA debate. I love him because he's so knowledgeable and helpful and sweet--but is it really worth it? Is it worth keeping a doctor I know is giving me a hard time? A doctor whose appointments I dread? (Though honestly, I hate all doctors appts at this point. If I never see another doctor, it will be too late.)
I might be back here before I see him to rant some more, I might not. But at least I know there are one or two people listening.
"Underneath my skin is it/ Just anger just frustration/ Underneath my skin is it/ Just nothing all these feelings" ~Faber Drive
Friday, October 4, 2013
Running Outside
Today was the first time I ran outside.
I haven't been doing a great job of keeping up with the Couch to 5K regimen. It's been a combination of school, holidays, and health crap, mostly. But I went today for the first time in nearly two weeks.
Of course, there was tons of stuff on the treadmill, so I didn't have much of a choice. I threw a skirt on over my pants, put on a loose 3/4-sleeved shirt, put my Tummietote on over that (with an Epi-Pen, my meter, phone, winkies, and iPod), and went outside.
It was hot and sticky, and my legs already started getting tired on the walk up the hill. At the top of the hill, I turned right and began to run.
I didn't get very far, and I started walking not too long after. I alternated running and walking for two circuits around the oval. People stared (mostly kids getting off their buses), but I did it.
Some things I learned:
1. It was very smart of me to choose that oval, because it was flat and I wouldn't have been able to handle any more hills.
2. I need a better shirt to do this in if I intend to go running outside; the one I wore was too hot.
3. People stare. Let them. I'm doing something good for myself.
4. I run more than I walk when I'm on the treadmill. Maybe it was too humid, but I think I walked MUCH more than I ran today. I'm oddly okay with that.
5. Running is much more fun outside.
6. I may have eaten through every calorie I burned with lunch (or all the chocolate I ate today), but I'm proud of myself nonetheless.
If I can figure out the cold air problem, I think I'd run outside, even in the winter. It's SO much better than the treadmill.
I haven't been doing a great job of keeping up with the Couch to 5K regimen. It's been a combination of school, holidays, and health crap, mostly. But I went today for the first time in nearly two weeks.
Of course, there was tons of stuff on the treadmill, so I didn't have much of a choice. I threw a skirt on over my pants, put on a loose 3/4-sleeved shirt, put my Tummietote on over that (with an Epi-Pen, my meter, phone, winkies, and iPod), and went outside.
It was hot and sticky, and my legs already started getting tired on the walk up the hill. At the top of the hill, I turned right and began to run.
I didn't get very far, and I started walking not too long after. I alternated running and walking for two circuits around the oval. People stared (mostly kids getting off their buses), but I did it.
Some things I learned:
1. It was very smart of me to choose that oval, because it was flat and I wouldn't have been able to handle any more hills.
2. I need a better shirt to do this in if I intend to go running outside; the one I wore was too hot.
3. People stare. Let them. I'm doing something good for myself.
4. I run more than I walk when I'm on the treadmill. Maybe it was too humid, but I think I walked MUCH more than I ran today. I'm oddly okay with that.
5. Running is much more fun outside.
6. I may have eaten through every calorie I burned with lunch (or all the chocolate I ate today), but I'm proud of myself nonetheless.
If I can figure out the cold air problem, I think I'd run outside, even in the winter. It's SO much better than the treadmill.
The Appointment
So I saw Dr. S., my pulmonologist, on Tuesday.
I actually missed a class to see her, which I hate doing. (And it's a class with 12 people in it--everyone knew I wasn't there, though at least my program advisor knew I had a valid excuse.) I missed a speaker I wanted to hear.
I was early, which was awesome because I was taken in 10 minutes before my appointment time. She came in to do my exam after I was in a nice, gray-blue gown.
She greeted me with "Hello, stranger," which I thought was awesome (I hadn't seen her in nearly 10 months). She proceeded to tell me how awesome I looked, health-wise. She also complimented me on my hair cut. (How did she remember that I had such long hair the last time I saw her?)
My lungs were clear (as usual), everything else was fine (as usual, and thank God). She sent me off for a breathing test, which she assured me would be fine (as usual), and off I went.
I hate the breathing tests. I don't find them annoying nearly as much as I find them painful. Yeah, that's right. I said painful. They aren't supposed to be. But my chest hurts during and after every, single time. Also, I tend to be more short of breath afterwards.
And then I got in to see her. My breathing test was normal (yay), my diffusion capacity was normal (no surprise, but also yay). But there was this one test that was off.
There's a test they can do that shows the muscle strength of the muscles you use for inhalation and for exhalation. They make you blow (or suck) as hard as you can against resistance. My exhalatory muscles, apparently, were working at 51% capacity.
She told me that it's not an objective test--it relies heavily on the participation of the patient (meaning me). But I DID try, which makes things...interesting.
I don't think this test is used as a diagnostic test so much as it's used for confirmation. But we KNOW I have muscle issues, mostly with repeated movement. (Or at least I do, since no one ever makes you do repeated muscle movements for a strength exam.)
She recommended that I see the neurologist I saw last year again. If she says nothing's changed, she'll do another exercise study to be sure, followed by...nothing.
I hated the neurologist I saw last year. She's an MS specialist, and I went to see her because the neuromuscular diseases clinic wouldn't give me the time of day (apparently she'd had trouble with several other patients and these idiots, so she no longer sends people there). But this doctor wanted nothing to do with me because I (VERY THANKFULLY) don't have MS. She kinda waved me off and left me to hang out there to dry. But she also told me to stop testing my blood sugar so much, because there's obviously no reason to. (Like I said: I hated her.)
I brought up the wrist pain I'd been having for...months. (I've been ignoring it, and it's been getting worse.) She recommended that I see my rheumatologist for that. Yay.
Someone recommended that I see the rheumatologist instead of the neurologist, because he did strength testing, too, and because the neuro is basically useless, and because I have to see Dr. A., anyway. I put in a call to Dr. S. about it, but I missed her call back because I was meeting with my creative writing professor. Now I have to put in another call to her and hope she calls when I have my phone on me (and that my phone decides to ring when she calls).
I made an appt with Dr. A. for November 26th. And I'm to call back every week or so to see if there are cancellations, because I don't want to miss another lecture for that seminar class. (It was either that appt or something at the very end of December).
I went home in a terrible mood. I'd basically been told that there's nothing wrong with my lungs except stress and if I stop seeing doctors, it'll go away. Now, aside from the obvious "that's no way to treat a patient", there's another reason why that bothered me so much.
I've had breathing problems since I was seven. Yes, I had just switched schools, but no, I wasn't terribly stressed. And it only happened when I ran. It got worse as I got older, especially after I had mono when I was ten, and then gradually worse after that.
I know myself. Quite well, actually, since I live inside my own head. I know what shortness of breath feels like, I know what stress feels like, and I know when one is causing the other. I only get shortness of breath when I feel extremely stressed (like when I have two exams and a paper due in the same week). I don't get it when I'm minimally stressed or when I don't feel very stressed.
But also, I started seeing her at a time when I could hardly finish a sentence. That went on for six months. It was the worst "attack" of whateverthehell this is I've ever had. It started when I got bronchitis, it went away after another bout of bronchitis and another course of antibiotics (same antibiotic, same dosage--go figure). Those aren't stress-marked situations, they're health-marked situations. Correct me if I'm wrong, but does that sound like stress to you?
Admittedly, this is the first time I've gotten the stress talk from a doctor who really tried to figure it out first. Usually I get it when doctors have no clue what's going on. She admitted that she doesn't know, but she also spent a year and a half looking.
Maybe it is muscular, after all that. (She got upset when she heard I still have trouble with my arms getting tired when I wash my hair...as if cutting it all off would've helped with that. It helped with brushing, since there's very little to brush and no knots, but it didn't help enough with the washing. Admittedly, I didn't know it was that abnormal.) Maybe the muscles around my lungs are weak. There's no real way for me to know. But I do know that on that day, I had trouble with my legs getting tired while doing the stairs. Some days my arms get tired when I get dressed. (No, I'm not kidding.) There are things I don't even notice, because they're so usual for me by now that they're beyond normal. Maybe my other issues are the key to my breathing problems.
I do wonder what my rheum is going to say. My wrist isn't swollen, it isn't hot, it isn't red. I don't recall any injuries to it. And it only hurts with one motion. (If you have your hand with your thumb pointing up and push down, that's the motion.) But it's been interfering with putting on my backpack, carrying pots between the stove and the table, washing dishes, and some other things. It's inconvenient, and this is my non-dominant hand. (Therefore I guess it could be worse?)
I just don't know what to think anymore. I'm sick of being sick, I'm sick of seeing doctors, but more, I just wish I felt healthy.
And I get to see my endocrinologist in two weeks. Yay again?
I actually missed a class to see her, which I hate doing. (And it's a class with 12 people in it--everyone knew I wasn't there, though at least my program advisor knew I had a valid excuse.) I missed a speaker I wanted to hear.
I was early, which was awesome because I was taken in 10 minutes before my appointment time. She came in to do my exam after I was in a nice, gray-blue gown.
She greeted me with "Hello, stranger," which I thought was awesome (I hadn't seen her in nearly 10 months). She proceeded to tell me how awesome I looked, health-wise. She also complimented me on my hair cut. (How did she remember that I had such long hair the last time I saw her?)
My lungs were clear (as usual), everything else was fine (as usual, and thank God). She sent me off for a breathing test, which she assured me would be fine (as usual), and off I went.
I hate the breathing tests. I don't find them annoying nearly as much as I find them painful. Yeah, that's right. I said painful. They aren't supposed to be. But my chest hurts during and after every, single time. Also, I tend to be more short of breath afterwards.
And then I got in to see her. My breathing test was normal (yay), my diffusion capacity was normal (no surprise, but also yay). But there was this one test that was off.
There's a test they can do that shows the muscle strength of the muscles you use for inhalation and for exhalation. They make you blow (or suck) as hard as you can against resistance. My exhalatory muscles, apparently, were working at 51% capacity.
She told me that it's not an objective test--it relies heavily on the participation of the patient (meaning me). But I DID try, which makes things...interesting.
I don't think this test is used as a diagnostic test so much as it's used for confirmation. But we KNOW I have muscle issues, mostly with repeated movement. (Or at least I do, since no one ever makes you do repeated muscle movements for a strength exam.)
She recommended that I see the neurologist I saw last year again. If she says nothing's changed, she'll do another exercise study to be sure, followed by...nothing.
I hated the neurologist I saw last year. She's an MS specialist, and I went to see her because the neuromuscular diseases clinic wouldn't give me the time of day (apparently she'd had trouble with several other patients and these idiots, so she no longer sends people there). But this doctor wanted nothing to do with me because I (VERY THANKFULLY) don't have MS. She kinda waved me off and left me to hang out there to dry. But she also told me to stop testing my blood sugar so much, because there's obviously no reason to. (Like I said: I hated her.)
I brought up the wrist pain I'd been having for...months. (I've been ignoring it, and it's been getting worse.) She recommended that I see my rheumatologist for that. Yay.
Someone recommended that I see the rheumatologist instead of the neurologist, because he did strength testing, too, and because the neuro is basically useless, and because I have to see Dr. A., anyway. I put in a call to Dr. S. about it, but I missed her call back because I was meeting with my creative writing professor. Now I have to put in another call to her and hope she calls when I have my phone on me (and that my phone decides to ring when she calls).
I made an appt with Dr. A. for November 26th. And I'm to call back every week or so to see if there are cancellations, because I don't want to miss another lecture for that seminar class. (It was either that appt or something at the very end of December).
I went home in a terrible mood. I'd basically been told that there's nothing wrong with my lungs except stress and if I stop seeing doctors, it'll go away. Now, aside from the obvious "that's no way to treat a patient", there's another reason why that bothered me so much.
I've had breathing problems since I was seven. Yes, I had just switched schools, but no, I wasn't terribly stressed. And it only happened when I ran. It got worse as I got older, especially after I had mono when I was ten, and then gradually worse after that.
I know myself. Quite well, actually, since I live inside my own head. I know what shortness of breath feels like, I know what stress feels like, and I know when one is causing the other. I only get shortness of breath when I feel extremely stressed (like when I have two exams and a paper due in the same week). I don't get it when I'm minimally stressed or when I don't feel very stressed.
But also, I started seeing her at a time when I could hardly finish a sentence. That went on for six months. It was the worst "attack" of whateverthehell this is I've ever had. It started when I got bronchitis, it went away after another bout of bronchitis and another course of antibiotics (same antibiotic, same dosage--go figure). Those aren't stress-marked situations, they're health-marked situations. Correct me if I'm wrong, but does that sound like stress to you?
Admittedly, this is the first time I've gotten the stress talk from a doctor who really tried to figure it out first. Usually I get it when doctors have no clue what's going on. She admitted that she doesn't know, but she also spent a year and a half looking.
Maybe it is muscular, after all that. (She got upset when she heard I still have trouble with my arms getting tired when I wash my hair...as if cutting it all off would've helped with that. It helped with brushing, since there's very little to brush and no knots, but it didn't help enough with the washing. Admittedly, I didn't know it was that abnormal.) Maybe the muscles around my lungs are weak. There's no real way for me to know. But I do know that on that day, I had trouble with my legs getting tired while doing the stairs. Some days my arms get tired when I get dressed. (No, I'm not kidding.) There are things I don't even notice, because they're so usual for me by now that they're beyond normal. Maybe my other issues are the key to my breathing problems.
I do wonder what my rheum is going to say. My wrist isn't swollen, it isn't hot, it isn't red. I don't recall any injuries to it. And it only hurts with one motion. (If you have your hand with your thumb pointing up and push down, that's the motion.) But it's been interfering with putting on my backpack, carrying pots between the stove and the table, washing dishes, and some other things. It's inconvenient, and this is my non-dominant hand. (Therefore I guess it could be worse?)
I just don't know what to think anymore. I'm sick of being sick, I'm sick of seeing doctors, but more, I just wish I felt healthy.
And I get to see my endocrinologist in two weeks. Yay again?
Saturday, September 28, 2013
I Know It's Been A While...
...And there's lots to tell. But the most recent events come first.
The most recent is that I've officially had Enough of dealing with metformin side effects and I'm back to dreaming about insulin. My blood sugars may be happier with the increased dose of met, but my GI system is NOT. I have an endocrinologist appt in just under three weeks. I'm not looking forward to the conversation I'm going to have with him.
The next most recent is that I had TWO (or three) airborne allergic reactions to nuts over the three day holiday we just had (actually, it was an eight-day holiday and only two of the three days I'm referring to were actually part of that holiday...the last was just plain old normal shabbos...and here is where things get too complicated to explain unless you're a religious Jew and know exactly what I'm talking about).
The first was on Thursday night. We went to shul (synagogue) for a holiday called Simchas Torah. Basically, in this holiday the men get to make utter fools of themselves and the women get to watch and talk to each-other.
A very important aspect (if you're a kid) of this holiday is getting small packages with candies and other treats inside. For years one of my neighbors made them, then we did for quite a while, followed by this year, when we said that enough was too much and my neighbor went back to doing it.
She used to just put in pretzels and a water bottle and some small things. This year she put TONS of things in, including a candy called nutty chews, which are the Jewish equivalent of Snicker's bars.
I'm airborne allergic to peanut...if it's being cooked. But that night, I started having trouble breathing within minutes of her having handed out the packages. My sister and I left, and we ended up going to a neighbor's house to have somewhere to go and something to do. (She and her son are both airborne allergic to nuts, so they left as soon as the packages were handed out.) I didn't take Benadryl (too stubborn) until about 12:30 that night, when my cough and shortness of breath disappeared within ten minutes.
The next night we went to the same neighbor's house (the one who made the packages, not the one allergic to nuts). She had made a bunch of salads, and they had nuts in them. I literally walked into her kitchen and couldn't breathe--that was all it took. I sat in her living room, took a Benadryl, and didn't say a word.
My sister thinks I'm out of my mind. Since when am I airborne to pecans and peanuts and hazelnuts and everything else? Therefore, in her mind, I must be making it up. It makes me terribly angry that I'm the only one around here who gets it. But it also scares me--because if my sister, who lives with me and knows I never leave the house within an epi-pen, won't believe me, then why should the server in a restaurant or the people I go to for meals?
I hate having a food allergy. I hate being neurotic and interrogating the people who give me food. I hate being that nutcase (no pun intended) who comes over sometimes and freaks out when there are nuts around. It seems so innocuous to everyone else--to me, it's literally deadly.
On Thursday, we went to the N's. We go to the N's every, single week--almost without fail. During holidays like this, we're often there a few times in the same week.
They threw a birthday party for my father. There was a cake, some fruit, and lots of little things like chocolate covered pretzels and trail mix.
If you don't have a nut allergy, you probably just skipped over "trail mix" the same way you did over "fruit" and "chocolate covered pretzels". My heart skipped a beat reading it over.
I couldn't believe that they had put out trail mix (with walnuts! my archenemy!) along with everything else. Like the chocolate covered pretzels coated in nuts aren't bad enough.
I sat at the other side of the table. When it was passed my way, I pushed my chair all the way to the wall. Thankfully, we were outside. I had a mild, mild reaction (enough to pretend that it wasn't a reaction) and I moved on.
These people don't remember--almost ever. I have to interrogate them every, single time I go over there. We eat there every week. How hard is it to remember that I could die if someone ate that stuff in front of me?
I had a bad experience in my favorite restaurant a few weeks ago. I ordered an eggplant rolatini, which I've had about a thousand times before. I cut it open, and there were little, green flecks inside the ricotta cheese, which I've never seen before in this restaurant.
I got up and asked the manager (who makes it his business to not only be nice to me but also go crazy over trace amounts because he has a strict "no dying in my restaurant" policy) about the green flecks. As I'd suspected, they were pesto. Pesto has nuts in it--usually pine nuts, but I've heard of walnuts being used. This time it was almonds.
He literally turned dead-white. This energetic, wonderful man nearly fainted just because I had green flecks in my food. This is someone who gets it.
I ended up getting a new order without pesto, no problems, no questions asked. The event chilled me for a day and then I moved on. This happens All. The. Time. I almost eat something I shouldn't, I don't, then I move on.
(For the record, he hadn't known there was pesto in the eggplant rolatini until he asked the chef. They changed chefs a few weeks ago and he still hasn't figured out what has been changed. He said that he was going to speak to the chef to go over what has which allergens in it. He will NOT let this happen again, as he has assured me. I trust him, so I believe him. It will not happen again. I can continue eating safely in his restaurant.)
But this is my reality. I live in constant fear of having a reaction. I keep epi-pens with me for a reason, after all. I read food labels. I'm careful.
But the people around me aren't. Many of the people around me have no regard for food allergies, no response to "you could have killed me", no second thought that maybe what they're doing isn't safe.
It's a ridiculous notion to them. I've even met some doctors who tell me it's no big deal. Like hell it isn't. It's the single scariest thing that could happen to me in a split second.
The scariest part is that this allergy keeps getting worse. I used to only be allergic to walnuts, and mildly so at that. It quickly progressed to peanuts and almonds, followed by, well, everything. Then I was airborne allergic to walnuts. Then hazelnuts. Then everything. What's next? Anaphylaxis from seeing a Snicker's bar?
There's a new (supposedly) miraculous allergy drug called Xolair. I might just go back to seeing an allergist to see if it's worth a try. To think that I might not have to constantly have my ears primed for hearing "nut" at the end of every word might be wonderful. It wouldn't be a cure--there's no such thing yet and I don't expect one in my lifetime--but it would be something.
And that's everything I'm putting in this post.
"If you're lost and alone/ Know you're sinkin' like a stone/ Carry On" ~Fun.
The most recent is that I've officially had Enough of dealing with metformin side effects and I'm back to dreaming about insulin. My blood sugars may be happier with the increased dose of met, but my GI system is NOT. I have an endocrinologist appt in just under three weeks. I'm not looking forward to the conversation I'm going to have with him.
The next most recent is that I had TWO (or three) airborne allergic reactions to nuts over the three day holiday we just had (actually, it was an eight-day holiday and only two of the three days I'm referring to were actually part of that holiday...the last was just plain old normal shabbos...and here is where things get too complicated to explain unless you're a religious Jew and know exactly what I'm talking about).
The first was on Thursday night. We went to shul (synagogue) for a holiday called Simchas Torah. Basically, in this holiday the men get to make utter fools of themselves and the women get to watch and talk to each-other.
A very important aspect (if you're a kid) of this holiday is getting small packages with candies and other treats inside. For years one of my neighbors made them, then we did for quite a while, followed by this year, when we said that enough was too much and my neighbor went back to doing it.
She used to just put in pretzels and a water bottle and some small things. This year she put TONS of things in, including a candy called nutty chews, which are the Jewish equivalent of Snicker's bars.
I'm airborne allergic to peanut...if it's being cooked. But that night, I started having trouble breathing within minutes of her having handed out the packages. My sister and I left, and we ended up going to a neighbor's house to have somewhere to go and something to do. (She and her son are both airborne allergic to nuts, so they left as soon as the packages were handed out.) I didn't take Benadryl (too stubborn) until about 12:30 that night, when my cough and shortness of breath disappeared within ten minutes.
The next night we went to the same neighbor's house (the one who made the packages, not the one allergic to nuts). She had made a bunch of salads, and they had nuts in them. I literally walked into her kitchen and couldn't breathe--that was all it took. I sat in her living room, took a Benadryl, and didn't say a word.
My sister thinks I'm out of my mind. Since when am I airborne to pecans and peanuts and hazelnuts and everything else? Therefore, in her mind, I must be making it up. It makes me terribly angry that I'm the only one around here who gets it. But it also scares me--because if my sister, who lives with me and knows I never leave the house within an epi-pen, won't believe me, then why should the server in a restaurant or the people I go to for meals?
I hate having a food allergy. I hate being neurotic and interrogating the people who give me food. I hate being that nutcase (no pun intended) who comes over sometimes and freaks out when there are nuts around. It seems so innocuous to everyone else--to me, it's literally deadly.
On Thursday, we went to the N's. We go to the N's every, single week--almost without fail. During holidays like this, we're often there a few times in the same week.
They threw a birthday party for my father. There was a cake, some fruit, and lots of little things like chocolate covered pretzels and trail mix.
If you don't have a nut allergy, you probably just skipped over "trail mix" the same way you did over "fruit" and "chocolate covered pretzels". My heart skipped a beat reading it over.
I couldn't believe that they had put out trail mix (with walnuts! my archenemy!) along with everything else. Like the chocolate covered pretzels coated in nuts aren't bad enough.
I sat at the other side of the table. When it was passed my way, I pushed my chair all the way to the wall. Thankfully, we were outside. I had a mild, mild reaction (enough to pretend that it wasn't a reaction) and I moved on.
These people don't remember--almost ever. I have to interrogate them every, single time I go over there. We eat there every week. How hard is it to remember that I could die if someone ate that stuff in front of me?
I had a bad experience in my favorite restaurant a few weeks ago. I ordered an eggplant rolatini, which I've had about a thousand times before. I cut it open, and there were little, green flecks inside the ricotta cheese, which I've never seen before in this restaurant.
I got up and asked the manager (who makes it his business to not only be nice to me but also go crazy over trace amounts because he has a strict "no dying in my restaurant" policy) about the green flecks. As I'd suspected, they were pesto. Pesto has nuts in it--usually pine nuts, but I've heard of walnuts being used. This time it was almonds.
He literally turned dead-white. This energetic, wonderful man nearly fainted just because I had green flecks in my food. This is someone who gets it.
I ended up getting a new order without pesto, no problems, no questions asked. The event chilled me for a day and then I moved on. This happens All. The. Time. I almost eat something I shouldn't, I don't, then I move on.
(For the record, he hadn't known there was pesto in the eggplant rolatini until he asked the chef. They changed chefs a few weeks ago and he still hasn't figured out what has been changed. He said that he was going to speak to the chef to go over what has which allergens in it. He will NOT let this happen again, as he has assured me. I trust him, so I believe him. It will not happen again. I can continue eating safely in his restaurant.)
But this is my reality. I live in constant fear of having a reaction. I keep epi-pens with me for a reason, after all. I read food labels. I'm careful.
But the people around me aren't. Many of the people around me have no regard for food allergies, no response to "you could have killed me", no second thought that maybe what they're doing isn't safe.
It's a ridiculous notion to them. I've even met some doctors who tell me it's no big deal. Like hell it isn't. It's the single scariest thing that could happen to me in a split second.
The scariest part is that this allergy keeps getting worse. I used to only be allergic to walnuts, and mildly so at that. It quickly progressed to peanuts and almonds, followed by, well, everything. Then I was airborne allergic to walnuts. Then hazelnuts. Then everything. What's next? Anaphylaxis from seeing a Snicker's bar?
There's a new (supposedly) miraculous allergy drug called Xolair. I might just go back to seeing an allergist to see if it's worth a try. To think that I might not have to constantly have my ears primed for hearing "nut" at the end of every word might be wonderful. It wouldn't be a cure--there's no such thing yet and I don't expect one in my lifetime--but it would be something.
And that's everything I'm putting in this post.
"If you're lost and alone/ Know you're sinkin' like a stone/ Carry On" ~Fun.
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