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”.

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..

The “Law of Medical Tests”

Disclaimer: This law may only pertain to me… clue me in as to whether others experience this please!

According to this law, I will have an xxx number of medical tests that will come back normal until I reach a critical limit and get an abnormal result back. What makes this particularly unusual is that the abnormal results can be completely random. For example, I just had a series of blood tests ordered by my nephrologist. I got back 5 normal results (Yay! I don’t have Hepatitis!) and therefore earned an abnormal result. I wasn’t really expecting anything to be abnormal. I knew I didn’t have hepatitis (2 of the tests ordered), I didn’t think I had vasculitis (2 more of the tests), and I thought my complement was fine (another 2 more of the tests). Turns out I was partially right on that last part. This is where the law stepped in. My C3 is just dandy. My C4, however, is a bit low. I have NO idea why this would be. I have NO idea what it means. I was NOT expecting it. And that’s how the law goes… it happens whether I’m expecting it or not. So now I have a test result saying that there’s something funky going on with my immune system. I’m really curious what this will mean for my next appointment. I am slightly worried that this may lead to a kidney biopsy in my future.

So now I’m seriously considering asking for a CBC with every series of tests or a CPK. Something that I know will come back slightly abnormal and will fulfill the “Law of Medical Tests” requirement without adding anything new and random to consider. I don’t think it matters what is abnormal as long as something is. 

Weight-Loss

Weight-loss is a tricky sticky subject. Everyone wants to lose weight until you don’t. And at that point, you really don’t. Heaven forbid that you’re still losing weight though because then all the walls tumble down and open up allowing anyone and everyone to judge you for something.

“You’re actually upset that you’re losing weight?! I’d be grateful!”

“Who complains about losing weight? You’re not even that skinny!”

“You can afford to lose the weight…”

You’re too skinny! Put some weight on!”

“Just eat more!”

“Do you have an eating disorder??”

There is no end to the judgement that pours in when any topic about weight-loss comes up. This is a HUGE reason behind why I’ve let my latest symptom just sort of blow over. In the past few months I’ve lost around 10% of my weight. I was hesitant to say anything because 1) I still weight a normal amount (121lbs), 2) I didn’t want to be accused of an eating disorder (seriously, I’ve been obsessed with eating MORE calories just to counteract any future accusations), and 3) I really really don’t want to hear that I should be grateful or that others are jealous or that I should eat more (Really!? Because I am too STUPID to think “Hey, I’m losing weight…maybe I should eat more! Brilliant!”). 

So completely stupid “eat more” comments aside… it’s horrible that someone can feel scared and vulnerable enough to admit that they are unintentionally losing weight (fully knowing that this is a very weight-loss geared society) and they are told to be grateful. Grateful for what?? Imagine all the possible reasons for losing weight without trying when normally it is so difficult to do. They aren’t pretty thoughts: malabsorption, GI obstruction, organ failure, cancer…etc. The idea that the weight-loss could be due to any one of those reasons is TERRIFYING. And then with any new horrifying thing the question always comes up.. “what will happen to me?” Worst case scenarios run rampant through the mind and they’re hard to tame.

So I’m scared. I have seen others with my disorder go through this sort of thing. I’ve seen how they eventually move to a fully fluid diet. And when that fails I’ve seen them get feeding tubes through the nose or directly into the stomach. And when that fails I’ve seen them go to total parental nutrition. All of this is an extremely rare complication of Ehlers Danlos but it happens. It also happens in mitochondrial disorders or metabolic disorders. Or maybe I won the lottery and have a whole new different possibility to deal with. Or it may be nothing. But a 10% weight-loss is a LOT when I’ve done absolutely nothing to provoke/earn it and haven’t weighed this little for years.. 

The Genetics Appointment

I mentioned a looonnngggg time ago that I was making my “EDS pilgrimage” to the geneticist to finally get officially evaluated by a geneticist. While many doctors have said that I have EDS, including a rheumatologist, many other doctors won’t consider the diagnosis to be true, however, unless it’s from a geneticist. So off to the geneticist I went!

The appointment itself was very long. The first half hour involved a genetic counselor asking me  about all of my symptoms and also my family history. In fact, the family history took up a large chunk of this time period and I only have one parent’s history to offer. I wasn’t expecting them to ask about my medical history or care too much about my symptoms since they asked for medical records before hand, but they were definitely interested in every single little thing with that too.

After that, the doctor came in and performed an evaluation. She measured EVERYTHING. Including, for example, the distance between my eyes (2.4cm). She asked me to perform certain moves to test my flexibility, making sure to tell me that they were not normal ranges of motion and shouldn’t be done. She listened to my heart, checked my eyes, checked my abdomen. She did the full work up…seriously, she even wrote down that I have gray hairs! After that she took pictures. Looottttsss of pictures. I have a weird palmar crease. Picture! My elbows are seriously flexible. Picture! Flexible hands? Picture! She even took a picture of my tongue!! It’s like a whole new world going into a genetics appointment. Thankfully I was told today that I pull off the hospital gown look.

After the evaluation, she discussed a lot of things that were a possibility and the reasoning behind her theory. This was rather confusing to me because there was a lot going on and a lot to take in. This is the main reason I haven’t written an update about the appointment yet. I got copies of the appointment summary today though so I can better relay what she is thinking now.

For one thing, reading a genetics report can be very unflattering. I have “simple ears” which are low set. I have a small jaw. I am disproportionate (more on this later). But on the plus side, I have remarkable extremities and soft skin! Overall, I scored a 9/9 on the beighton scale. They pointed out at the appointment that my flexibility was rather astonishing and this is coming from a doctor who sees EDS patients all the time. Unfortunately she (the geneticist) seems to be leaning towards more vascular diagnoses. She wants to test me primarily for Vascular-EDS. I am also being tested for Marfans, although she said I may just have Marfan overlap due to the disproportion of my limbs. She’s also testing me for Loey-Dietz Syndrome and TAAD (Thoracic aortic aneurysm and dissection). Those are all icky vascular diseases that have a high rate of aneurysms and dissected aneurysms. Not a good thing. I am also being tested for Classical EDS, which is the type I thought I may have all along.

Unfortunately, she doesn’t think that EDS (or one of the other above connective tissue diseases) is my only problem. She was very emphatic on my having something other than just the EDS going on. She mentioned the possibility of another connective tissue disorder, like Alport Syndrome, which is a terrifying kidney disease. I don’t believe I have this one. It doesn’t match up very well. I may also have a mitochondrial disease or a metabolic disorder. This is based on the fact that my CPK levels are often above the normal range (I’ve had 4-5 tests and only one of them had normal levels….barely…) and also because of the blood in my urine. It would be great to have that stuff explained, but it’s terrifying to wrap my mind around another problem. I hate to say it, but a mitochondrial disease would  explain a lot of things for me though and I wouldn’t be surprised to be diagnosed with one. I’m intimidated by the idea of it however.

All in all, the appointment revealed some very terrifying possibilities. And the future might not look as pretty or as easy as it once did. But one IMPORTANT thing that happened is I don’t feel like a hypochondriac. Not when her report states that I “have clinical features which are concerning.” I feel so much more validated and that is a HUGE weight lifted off of me. I am certain now that I’m doing the right thing by going to the doctors and doing all the tests. There is a reason for me to be doing this and it’s not all in my head.

Perspective…

…is everything.

Every now and then I feel as if my body is breaking down on me. I seem to be experiencing new and terrifying symptoms every two weeks of late. With these new symptoms, I am faced with a choice of whether I seek medical attention for them or choose to ignore them. Because of my biology degree, I have just enough information to be dangerous to myself. This is only exacerbated by the fact that I am exceedingly stubborn. So the latest symptom that would send any normal intelligent person to their doctor is the fact that I had brown urine. This could be from any number of scary terrifying reasons, but because of the bloodwork I had about two weeks ago and my biology background, I feel like I can ignore it for the time being. I am prone to thinking that it’s either extreme dehydration, or is a result of increased CK levels (which I have had in the past). This intermittent symptom, coupled with the fact that I am having trouble waking up to my alarm these days, makes me feel betrayed. Like I said earlier, I feel as if my body is breaking down on me. I feel like it is being stealthy about it too…. little pieces that tear apart and disappear. Almost like they were never there. I say it’s sneaky, because the medical tests will hint at it, show evidence of it, and then be perfectly normal again. Anemic one day, fine the next. Muscle death yesterday, just dandy today. Ketones and protein in urine last week, only to disappear the next week. I find this incredibly annoying. If my body is going to treat me like crap and if I am going to suffer the symptoms of it, I’d like to get to the root cause. I want treatment! And I can only get that, if we stop this irritating game of “hide-and-seek”. 

But like I said earlier: Perspective is everything. I have seen people whose bodies are TRULY breaking down. They make what I suffer with look like a walk in the park. Sometimes I view this with: “Hey! My pain is pain and I deserve to get upset about it!” And I do. I do have that right to be upset, because what I’m dealing with does suck and it’s not something that can or should be compared. But sometimes I view the fact that others suffer worse symptoms with: “I REALLY appreciate what I have, even if it is hard for me at times.” And again, I do. I am so grateful for the health I do have. For the support I have. For the medical insurance I have. For the family I have. With any given day, my perspective may change. One day I may cry and rage at the unfairness and the next day I may thank God for the gifts I have been given. I believe that this change in perspective is just something that tags along with chronic illnesses. I’m almost positive that every patient out there probably can empathize with what I’ve written here.