Chronic disease sufferers: tell us your highest highs and lowest lows

For those of you who suffer from chronic conditions – diabetes, high blood pressure, HIV, what have you – that require you to regularly monitor your vital signs, what are the extremes you’ve experienced? What symptoms did you have at either end of the spectrum? Do you test as often as you should? If not, why not? Also, if you don’t mind, tell us what the normal or desired range is for whatever metric you give, as well as what your average measurement is.

I’ll start, of course. I have type-2 diabetes (that is, the non-insulin dependent version, managed by diet, exercise, and oral medications). This requires me to keep track of my blood glucose level: that is, the amount of sugar in my blood, which can derive not merely from eating sugary foods but also anything which the body can use for fuel; sugar is the most dangerous food ingredient for me, but not the only peril. I test six times a day, as I am on tight control – that is, I try to keep my blood glucose level close to the normal range for a person without diabetes, as this course of action is supposed to forestall complications, and perhaps prevent them entirely. The average blood glucose reading for a non-diabetic is 90-110 mg/DL.

My highest reading ever: somewhere around 750. This was when I was first diagnosed. I’d gone the doctor complaining of fatigue, constant urination, and reduced visual acuity. When the nurse tested me she reacted visibly, took a reading again, and immediately went to get the doctor. The doctor came back into the room and asked me when I’d last eaten; when I told her it was four hours previous she said she was going to give me an insulin shot immediately and if my reading didn’t come down I’d likely need to go to the hospital. I told her I wanted to avoid that if possible, but a few minutes later the point became moot as I passed out. They let me out two days later.

My lowest reading ever: 42. This was a hypoglycemic reaction, which means my sugar was dangerously low. I woke one morning dizzy, weak, confused and could not figure out what was wrong or what to do; I only knew that I needed to do something, but because my brain was starved of sugar I hadn’t the . The girl I was with had a diabetic brother, fortunately, and she knew how to use a meter; she tested me and got the above reading, then got a couple of glasses of orange juice into me until I was strong enough to eat something. This was probably the one time in my life being reckless had worked out for me; if I’d been sleeping alone I suspect I’d be dead now.

My current average score: 109 (my thirty day average).

Anybody else want to share? (And please don’t restrict yourself to diabetes stories; let’s fight all sorts of medical ignorance.)

Hm, Highest was 384, lowest was 63. Monthly mean for June was [checks glucowatch on my pda] 112

I once checked in to a hospital with a hemo of 22. I *wondered* why I was browning out when I stood up fast. I was just going in to visit the wqife of a guy I worked with when I stood up fast and keeled over. Turns out I had a severe kidney infection that I knew nothing about. Lucky me gets asymptomatic bladder and kidney infections. I tend to discover them once my condition degrades enough to be serios. Typically a fever and a 'different' back ache than my normal type/amount/location of pain. I would love to have a home piss test that I could stock up on and check monthly like a pregnancy test.

Can you define hemo, for those of us who’re wondering?

Chronic urticaria.

Hives all over my body for one year and two months solid.

And then I had four years without any. Now they crop up now and again and I take medicine that is finally effective at making them go away.

That 14 months was hell, and I’d never wish it on my worst enemy. They were everywhere. I was dosed with steroids until the doctors figured out I was allergic to those and the reason my condition was getting worse was the steroids. I itched, I was swollen, I was red, my hands and feet hurt and my hands would shake from the swelling, itching and pain. I was given drowsy-medicine to make me sleepy so that I could at least have some time (while asleep) that I didn’t feel the itch.

After that, normal life without hives is pretty damn good.

It’s not like monitoring vital signs all the time, but I have to be wary of external things like heat that can provoke the hives back out. This is because they get into the throat and I can die. Twice I’ve made the mad dash to the hospital for epinephrine. Can’t have steroids to kill the inflammation because they will only make it worse. So I get to spend the rest of my life trying to avoid getting hives.

How about that?? Me too!

I’ve had chronic idiopathic hives for over 6 years now, unrelieved. I daily take enough antihistamines to knock down a small elephant, just so I don’t look like I’ve been beaten. The drugs keep the hives typically small but they never totally go away.

Worst day: Massive event - huge dinner-plate size whelps all over my body then my tongue swells. So I go to the emergency room where the receptionist asks what’s wrong with me. “My tonnn ith thwowen.” :confused: She just can’t understand me so I lift up my shirt and show her the massive red whelps all over my torso. THAT got her attention. They barely get me in the back before my throat starts to close. Let me tell you kiddies, conscious intubation is not fun. But a massive shot of steriods followed by a shot of epinephrine just cleared that swelling right up. I was released in a couple of hours with my own personal epi-pens which go with me everywhere now.

Best day? Any day that doesn’t include a trip to the emergency room.

Good question. Typical “normal” range (there are differences between genders that I’ve ignored for this) for hemoglobin is 12-18 grams/deciliter, (The units are usually not expressed) and for hematocrit, the usual range is roughly 38-50% (a ratio of red blood cell volume vs whole blood volume)

So, they’re either got too much hemoglobin, and are about to start rusting, or they’re horribly anemic with either not enough red blood cells, or enough, but too small.

As for me, hypothyrodism. Worst low day was being on a weekend trip that was unexpectedly extended and I didn’t have enough synthroid for the extra days. Apparently, I was a shivering, blithering idiot as I couldn’t string more than two syllables together. Fortunately, someone with me knew I took synthroid and was able to find enough somewhere to keep me going until we got home.

I would love to have a home piss test that I could stock up on and check monthly like a pregnancy test.

I would suggest getting a clear glass or cup to “piss” in. Normal urine is very clear. If yours is cloudy, you probably have an infection.

I’m a Type I diabetic. I think I’ve tested in the teens before (mg of glucose / dL of blood)… although a blood sugar that low would usually result in unconsciousness, so it was either a faulty reading, or superior resolve and mastery of mind-over-matter… :slight_smile: I’ve passed out twice from low blood sugar, once in junior high and once in high school. I don’t think my control has improved since then, rather I prefer to err on the side of high blood sugar now-a-days lately recently…anymore.

I’ve also tested in the high 400s before.

As already mentioned Skald : a good average is 90-100. I don’t have my meter here at work, but my average is around 130, although I don’t test nearly as often as I should. Why? If this board weren’t anonymous, I’d claim it’s because I’m so accostomed to diabetes that I can tell when my blood sugar is rising/dropping/high/low. Partly true, but honestly… I’ve been dealing with it for a quarter of a century now, and the routine has worn thin.

When I read the thread title, I was thinking your typical emotional high’s and low’s, and I was figuring people would have a hard time coming up with a “high” component of having a chronic disease. Glad it’s just numeric. :slight_smile:

Congratulations to Skald the Rhymer and aruvqan - those are good averages, sounds like you guys are in great control.


Asthma: Highs are when I go a long time with no problems as long as I take my scheduled meds. A few years back, I spent a summer in Orange County, California, and there was nothing there I’d become allergic to so my asthma was *terrific. Lows: When I’ve got a flareup so bad I can’t lie down to sleep. Those are pretty rare fortunately. Some asthmatics’ lows are bad enough they’re in the ER being intubated, I’ve never gone there yet!

RLS: High: fall asleep before the twitching sets in. Lows: days where, if my schedule is disrupted and I don’t get sufficient downtime, and the fatigue is so grinding I feel like I’ll never be well again.

Eczema as a child, so severe on my hands sometimes that they would crack and bleed at the slightest movement; also on inside of elbows, inside of knees, ankles, and neck. I was a mess.

It cleared up with puberty, and my always-on-the-dry-side skin meant I didn’t get any acne to speak of, so I was not doing badly as a teenager.

In my 20’s it came back as atopic dermatitis, usually on my back, neck, ears and face. The worst attack I can remember was bad enough that I couldn’t turn my neck. I was treated by various dermatologists who prescribed topical cortico-steroids; they were a great relief at the time, but over time unfortunately I had to keep using stronger and stronger ones, which had their own side effects, so I weaned myself off of them and now don’t use them at all. I take Singulair for my asthma, and it also seems to help my skin allergies quite a bit, as does a dose of sunshine or tanning machine. The last really bad attack was over 25 years ago, so although my childhood was pretty scarred by the ugliness of eczema, I count myself pretty lucky overall.