Blood Sugar Crashes and Late Night Cravings

Something that I have struggled with for as long as I can remember is hypoglycemia. The problem with my having hypoglycemia, however, is that I cannot recognize the symptoms of the lowered blood sugar until it’s almost too late because of my also having dysautonomia. I have symptoms from the dysautonomia nearly every time I change positions on a daily basis. So normally I just assume that the reason I may be feeling poorly is because my blood pressure has dropped. So the first thing I do is drop to the ground with my head between my legs and wait for the the sick feeling to go away while hoping that I don’t faint. When it doesn’t go away I start to panic. It’s absolutely terrifying being on the edge of fainting, with your vision black, your arms and legs going numb, and feeling like you’re about to throw up, and having no idea how to fix it. So by the time I would figure out that it’s my blood sugar that’s the problem, it would almost be too late for me to fix it myself.

Seriously.. I’ve had my mother nearly spoon feed me ice cream at a Wendy’s Fast Food restaurant (although this is one excellent way to get FREE ICE CREAM).

Luckily by now I pretty much jump to “oh! Blood sugar!” right away if the solutions for a blood pressure drop don’t help. But it still comes on incredibly quickly and I’m not very capable when it does happen. I once tried to take my blood sugar with a monitor during one of these crashes and with shaking so badly and being so confused it was pretty much a comedy of errors.

Lately (or rather, for the past year or so) I’ve been waking up in the middle of the night with a strong craving for sweets resulting in my hunting down something sweet at 3am and eating it. I then conveniently forget it ever happened until I come across the evidence the next day: A jelly bean in my bed.. a candy wrapper on the floor… spilled skittles all over my desk… All of which I was ok with (assuming I never ever see an ant in my bed too) because it was an easy enough solution and I was trying to gain weight anyway. But about a week ago I reached my “Something’s gotta give” point.

I woke up and immediately felt that something was wrong. I was laying down but I felt numb, shaky, and nauseous so I figured out that it was my blood sugar within seconds of waking up and went to eat something. Unfortunately I promptly threw up what I ate. It took around two hours to get fully recovered and able to go back to sleep.

So yeah, I’m trying something new that will hopefully help me sleep through the whole night without any craving of sweets or throwing up.

It has carbs, sugars, AND protein. If this doesn't work I might cry... and then gorge myself on jelly beans.

It has carbs, sugars, AND protein. If this doesn’t work I might cry… and then gorge myself on jelly beans.

In other news… Going to the store and getting this, along with some other groceries, took enough effort to cause visibly bloody urine as well as muscle aches (by now I know that these signs mean that I also have an elevated CK level). It makes me incredibly frustrated to know that such a normal activity can overly tax my body during a time when I’m feeling better overall than I was about a year ago (I haven’t been to a doctor in TWO MONTHS!!). I guess I’ve sort of reached a lower level of “normal”.


The Stress Test….

…is almost as bad as a tilt table test. I’m not a fan.

An important thing you need to know is that I’m in shape. I’m thin, I walk everywhere, and I have decent muscle tone. I mean, I’m not going to be running marathons any time soon, but I can walk up a hill without wanting to die. So the whole crazy heart rate thing? Yeah… it’s just my heart being a jerk. I’m not deconditioned.

The stress test started with the placement of a few hundred electrodes (this might be an exaggeration.. maybe..). I looked like I got attacked by an octopus. I was then left alone in a room to wait until the doctor showed up. The majority of the time that I was sitting in that room, calmly reading (Game of Thrones… ), my heart rate was in the 100s. Interestingly my heart is apparently not a fan of coughing which caused it to shoot up to the 130s. When the doctor came in to start the test he did note that it was crazy to have a resting heart rate so high. He told the tech that it must feel so awful to have a heart rate that high all the time. Speaking from personal experience? It does.

Upon standing up, my heart rate jumped to the 130s. A diagnosis of Postural Orthostatic Tachycardia Syndrome (POTS) requires an increase in heart rate by either 30 beats per minute or a heart rate greater than 120 beats per minute within the first ten minutes of standing. I met both of these criteria. To my surprise, the cardio actually brought up POTS (he’s heard of it!!) and was asking whether I have POTS or Inappropriate Sinus Tachycardia (IST).

Overall the Stress Test was fairly normal (I call it my normal abnormal). While my heart rate was extremely high during the test and while I did have a few Premature Atrial Contractions (PACs), it was still fairly normal. Way to go heart… act normal when there’s someone watching, but I know how you really are… Seriously, I’ve had monitors show any number of things including: intermittent bundle branch block, a-flutter, SVT, PAT, couplets,  triplets, and PACs that drop my heart rate by a 100 beats in one minute. Think any of those would come out and play? Nope. But that’s fine. I’m patient (Ha. Ha. Get it?).

One thing that was achieved however was that my cardio changed his mind about the beta-blocker. At my first appointment, he wasn’t thrilled to see me on one, but prescribed it anyway. Today, when he saw how my heart reacted, his first words were “yeah, you really do need a beta-blocker”. He also said that once I move I need to find a new cardio and an electrophysiologist. I’m hoping he’ll help me find one and will refer me. He said that where I’m moving has excellent doctors, so that is encouraging.

Ironically, the stress test did stress me. While my heart may have been behaving unusually well, I did have brown urine after the test. Usually the brown urine, for me, signifies blood in my urine along with a CK  level outside of the normal range. While I was somewhat expecting that to happen, it doesn’t make me happy. It shows that 12 minutes on a treadmill is enough to start the muscle breakdown process and is too much of a stress on my body to go unnoticed. I’m not sure what exactly that means or what causes it, but it frightens me that it is now a consistent consequence of pushing my body too hard.

Really, I’m just looking forward to sleeping for a few days now.

New Cardiology Appointment

For around two years now I’ve had the same cardiologist. Maybe in the beginning she was a good doctor. That was when she thought I was dying and she acted pretty quickly to get the proper tests. Once the cardiac cath. showed that I was not dying, however, she suddenly seemed to have lost interest in trying to help me. I guess I lost all patient-appeal when I was no longer a patient with a terminal illness. So anytime I went to her with a problem, she would just increase the dosage of my meds. After one particularly horribly disappointing appointment, I found myself crying in a stairwell. In that stairwell I finally decided that I was never going back.

So I found a new cardiologist, with whom I had my first appointment today.

The appointment started off with a nurse getting some background information. I usually hate this part because it’s awkward. “Do you have a history or urinary tract infections?”…”Er, no… but I’ve had blood in my urine… it wasn’t an infection. I didn’t have kidney stones either…yeah…” It’s hard to give a medical history when things don’t fit a normal picture. So once we got past that awkwardness (and really, it’s not hard for me to make something awkward), she took my bp, pulse, and an EKG and then left me in the room to wait for the doctor.

Who appeared within a minute (That happens?! I was totally expecting to live and die in that room before he came in…). I however, became instantly wary when he asked why I needed a cardiologist. He asked what a 25 y/o was doing there. He asked who referred me. I was terrified that I had found yet another doctor who seemed to already be convinced that I was fine before even examining me.

Turns out it was just his method of trying to get to the reason I was there… Once he started looking through the records he had (most of them from the geneticist) his first comment was “you’re a complex case” While that’s not what everyone wants to hear, it is much better than him calling me a hypochondriac. So I was a bit relieved to hear it.

Then we went through the “Oh my geneticist feels strongly that I have either Classic or Vascular EDS and is testing me” bit. He asked me if I was flexible. I performed some circus tricks. He cringed. He then tried to tell me how horrible vascular type can be and I reassured him that I have a strong family history of aneurysms and therefore already know.

It’s freaky to hear your doctor say “Poor…” over and over while reading your report.

His commentary was pretty funny though: “You had a DEXA scan?!?…oh.. it showed something…” He needs to realize I’m a young person with old diseases or he’s going to be in for some unpleasant surprises. I can’t wait till he reads my GI scopes reports (although I’m not sure why a cardio would be reading those…).

So I finally have a cardio who seems to be able to handle “complex cases” without getting scared and without throwing drugs at me hoping they’ll do something. In fact, he doesn’t even like that I’m on the beta blockers at such a young age. Unfortunately all that means that I need to have a stress test. I’m definitely afraid of this test. I know it’s going to be unpleasant at the very least. Oh well. I’m still hoping for some answers and maybe a bad stress test will give me a chance at a solution/cure. Silver lining?

Am I My Illness??

Does my illness define me?

This question has haunted me for a while now. I call it a “mirror question”. A question that I’m afraid to truly ask for fear of what I’ll find out about myself.

For a while, I had thought that perhaps I was my illness. Maybe it was something that I had let define me. But worst of all, I was afraid it was something about me that I  liked. I would stay up at night thinking “what would I do if I didn’t have these symptoms?” and to my horror, I felt upset at the idea. So did this mean that I had let my illness define me?


My illness does not define me.

It took me a little bit of time to realize that, but first I had to be brave and finally face my “mirror question”. When I finally thought about it however, I realized that the lack of knowledge about what was affecting me was the thing that was making me upset. This is a bit tricky and a tad convoluted, but I hadn’t quite realized that if I didn’t have my symptoms, then I wouldn’t be sick. All I had considered was that I would have to start all over in trying to figure out what was wrong.

Once I realized that this was my hang up, I was able to answer my question honestly: If I didn’t have these symptoms I would do everything that I already am doing, but it would be a lot more easily done.

So what am I?

I am a Masters student in biology. I will soon be a PhD student in cellular biology (I got accepted into three programs!!!). I work full-time hours. I have many hobbies that I enjoy. I have friends who I hang out with.

So what does my illness add to this equation?

It makes everything so much harder. Those full-time hours? Being a graduate student? Those are so very hard to juggle by themselves, but with an illness? It’s a challenge. And that’s me being modest about how much of a challenge it actually presents. Often, I feel like a failure, because I can’t do it as easily as most people seem to be able to. I have limits. My illness gives me limits.

I would give anything to be able to get rid of those limits.

You Know You’re Cold When…

I always knew that I had trouble dealing with the cold. I’ve only recently begun to realize how much the cold truly does affect me.

Turns out when I'm cold...I'm COLD!

Turns out when I’m cold…I’m COLD!

Turns out I can’t go outside in winter for any length of time without my temperature severely dropping. The picture above was less than 15 minutes outside with a warm winter jacket. I’d been taking my temperature to see what the trend was. I drop down to 95 degrees Fahrenheit pretty frequently even when I’m in a heated environment. I had begun to think that maybe my thermometer was broken so I bought a new one (the white one in the bottom of the picture). I was really annoyed at first when my brand new thermometer read 92 degrees! I thought I bought a broken thermometer. So I tested it with the older one which read 93 degrees. I was shocked to see that my temperature truly was that low. Crazy.

My temperature also spikes up depending on what I’m doing. I’ve temped it as high as 101 before it dropped down to 97. I don’t think that is normal…

So now I have a new symptom to present to my doctor and a new thing to worry about. Guess I won’t be out playing for long periods of time in the snow huh?

Yup, I’m moving south…somewhere warmer..

To Someone Who Doesn’t Understand

To Someone Who Doesn’t Understand:

Let me explain to you the terror and anguish I feel with this disease. I know you have trouble understanding how much this impacts me. How I can be scared at one point and laughing at the next. What you don’t understand is that each smile, each laughter, each happy moment covers fear and hurt and pain. I am told this is a benign disorder. That there’s nothing wrong with me. I am ignored by doctors. I am made to feel like a hypochondriac. When I go to the hospital I am brushed off. I have no where to turn and it’s all often too much for me to handle myself. I am told to just live with this “benign disorder.” To just deal with it.

So what do I “just deal’ with?

I faint. Often. Anywhere and anytime. Sometimes it is in front of strangers. Sometimes it is in front of family. And sometimes it is by myself. I scare people when I faint in front of them. They look at me like I’m a circus freak. Yet shockingly very few rush to my help. I have fainted in a store, fast food restaurant, at work, at school, at home, in the bathtub, in front of friends, alone… How often have you fainted? Do you even remember the last time? I have had to lay down in a restaurant bathroom, stairwell, elevator, ER, next to my bed… If I don’t lay down, I faint. To make one thing perfectly clear: Fainting is NOT benign. I have had a bloody lip, I have hit my head, scratched myself, bruised myself, dislocated joints, subluxed joints, bruised bone…I have woken up in a bathtub full of water, thankful I didn’t drown.

It’s not epilepsy. So I am told it doesn’t matter. This doesn’t mean I don’t convulse. I don’t have epilepsy but I do have psuedo-seizures. I fall to the ground, I loose control of my body and I seize. Can you imagine how it feels to not be able to control your limbs, but lay there helplessly as they move of their own volition? And these are the few times I am conscious. Often I just hear about it from an observer.

It’s not a “severe heart condition.” So I am told to ignore the chest pain, the tachycardia, the bradycardia, the arrhythmias, the hypertension, the hypotension… An heart rate above 200 is benign and then when it goes below 60? Despite happening in the same heartbeat? That’s also benign. Can you imagine having a heart rate that is so variable? It feels SICK.The premature contractions are nothing. It doesn’t matter that I physically feel ill everytime they occur. Hundreds of times a day. Heart disease is the number one killer. Everyone is told to go to the ER with chest pain. When they feel discomfort or pressure in their chest. I am told to ignore it. Would you ignore it? I can’t ignore mine. Most people ignore mine.

Every move I make, my heart could go crazy. Every time I move, I could faint. There is no mercy. This can happen in public or in private. I live with this every second. It is always in the back of my mind. This is the nature of the disease I live with. And yet I am told it is benign.