Scanxiety and Other Sorts of Horrors

Scanxiety: It’s not just for cancer patients these days. With Loeys-Dietz, I have signed up for a life-long subscription of looking for little ticking time bombs. Is this the year I will have a brain aneurysm? Does that blood in my urine mean a renal aneurysm? Is heart surgery in my near future?

This condition and I are going to have so… much… fun…

But whatever, I’ve survived this year’s scanxiety. All of my MRAs (Magnetic Resonance Angiograms – not even the doctors know the difference!!) were normal. I’m so relieved! I’m going to go ahead and take this as a free pass to ignore any sudden sharp pains for a while. I’m pretty sure now that they’re not a sign that I’m going to die.

I still hate echocardiograms though. And this one was not an exception. While my MRAs were normal, the echocardiogram showed that my mitral valve is starting to get leaky. This isn’t really surprising with a connective tissue disease, but it’s certainly not a “yay!” moment. For now it’s fine though, just something to keep an eye on in the future.

The thing that is really annoying and troubling is that my echocardiograms tend to show elevated pulmonary arterial pressures. The very first time this happened, I had to get a cardiac catheterization test to get a more accurate measurement of the pressures. Thankfully that was normal, but the test itself had so many complications that it wasn’t funny. A twenty minute test took two hours and resulted in a puddle of my own blood on the floor. Fun. With the echos though I always worry that the pressures are something that will slowly get worse until it is a real problem.

After the first echocardiogram, I started beta-blockers and was able to get my heart-rate under control. Because of this, my second echo showed much lower pressures. With this third one though, the pulmonary pressures have gone back up to nearly where they were before I was on any medication. And this is even after having gone up in dosage. I have an uneasy feeling that another catheterization test is in my future. But at least I hopefully won’t have to worry about it for another year. I just need to avoid getting anymore echos between now and then.

So that’s the impassive and straight-forward explanation of how the tests went. But I’ve been really struggling lately. I feel so broken and dejected. Currently I have people lining up to get away from me and I’ve just stopped caring. I was recently yelled at for pushing someone away, and the ironic thing is I really wasn’t then… I am now. I’ve completely given up.

It took me so long to write this update because I don’t know how to share how much I have truly been struggling and I didn’t know how to just ignore it and write a fake response.

Along with the scanxiety, and getting through them, I’ve been having some insane GI issues and have dropped 5 pounds. I have never had such constant intense nausea. Even the last time when I lost so much weight, the nausea wasn’t nearly as bad and I could at least eat. This was definitely not the case this time around. My mornings consisted of huddling in the shower curled up in a ball crying, hoping that the nausea would lighten up enough so I could fake it better and go on with my day. I had also inadvertently went on a liquid diet without even realizing it. I survived on Ensure and soup… at least, whatever soup I could stomach before giving up an hour later (I flushed half a bowl of cereal down the toilet…).

And that’s just my health.

PhD school is… hard.

And one of my closest friends trying to get himself killed didn’t help either. And my other friends? I swear I’m just an exit sign to them anymore. Step on over here and I’ll show you the way to leave.

I feel like I have no heart to give right now. I’m just trying to get comfortable with being dead inside because maybe then the pain will hurt a little less.

I think I’m getting better at it. I wrote that last line without crying…

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New Year’s Resolutions

With this year almost over and the new one soon to start, I’m reminded of the New Year’s Resolution I made. Having reached my highest weight last year of 133 pounds I decided, like most people, to get fit and lose weight with the new year. My Resolution was to lose 5 pounds. I wanted to get back to around 127 pounds where I’d been for the past five years or so.

Those of you who have followed my blog for a while now can probably see where I’m going with this…

Be careful what you wish for.

133lbs - 5lbs does NOT equal 117lbs!!

133lbs – 5lbs does NOT equal 117lbs!!

Yeah, I overshot my mark. By 10 pounds. Go me. Not.

I started the Resolution by doing what I normally do: Nothing. I’m horrible at keeping up with my resolutions. Losing weight is a lot of work and food is so yummy. Especially things like brownies and cupcakes and pizza… Yum! So I did absolutely nothing to achieve my goal of losing 5 pounds for the first three or four months of the New Year.

And then I got sicker.

And then I started to lose weight.

A lot of weight.

So I lost the 5 pounds, but it didn’t stop there. The 10 pound mark came and went too. Once I hit the 15 pound point though, I was afraid. I had no idea why I was losing weight and I didn’t know how to stop it. So I went from wanting to lose weight to wanting to gain weight. I started to drink Ensure Plus for weight gain. The irony was not lost on me.

While I’m not gaining much of the weight back, I seem to have stopped losing it. I’m very thankful for that. There is nothing quite so terrifying as losing a large amount of weight (over 10%) and not knowing why. Only really sick people lose weight like that. I couldn’t imagine myself as being that sick. I still don’t know if I was. Maybe I wasn’t. Maybe I’m still in denial.

Now that another New Year is about to begin, I keep wondering what this year’s Resolution will be. I don’t think I’m going to make one. I’m just hoping the next year will be better than the last.

Update: Nephrology Appointment

Today was my 2nd nephrology appointment and overall it went pretty well. At least, as well as someone with a rarer illness can expect it to go. For one thing: My doctor actually did RESEARCH! I was stunned!! Aside from my geneticist, he’s the only one who said something about EDS that I didn’t already know!! Something relevant to my current symptoms! It was amazing! And for another thing: He consulted another specialist instead of just giving me a referral! Yes!! This means a LOT. I’m tired of having an ever-increasing list of specialists whom I go to. It’s exhausting and slightly depressing. These two things alone made the appointment amazing and they have nothing to do with my actual health. This goes to show how important doctor behavior is though. 

As for what came of the appointment, things are a little… frustrating… As is normally the case, the very first thing you do when seeing a doctor is to get weighed. This was one of the things I was most anxious about. Unfortunately, I’ve lost more weight and I’m down to 118lbs now. This isn’t a drastic change and it’s not like I’ve lost a huge amount of weight suddenly, but it’s not normal for me. It’s a new symptom. It’s concerning. It’s consistent. And it’s annoying as h*ll that I can’t get any doctor to take it seriously! It’s like they’re waiting till I finally crash before addressing it. Frankly, I’d like to avoid the crash that will happen if this continues. But oh well. Either way, it’s not a kidney doc’s place to worry about my weight anyway.

Since all my kidney tests came back relatively normal, the next logical step would be seeing a urologist and performing a cystoscopy to see if there’s anything going on in my bladder that could be causing the bloody urine. However my nephrologist consulted with the urologist (aren’t I smart for knowing all these different doctor specialties??) and they decided that, because of my EDS, it was too much of a risk at the moment to do a cystoscopy. With EDS, tissues can be fragile and “friable”. This means that I’m prone to being easily damaged and to easy bleeding. I wasn’t really surprised to hear this, especially since my GI scopes showed friable tissue. Why should my bladder be any different? Personally, I’m happy to bypass the whole shoving a scope up my pee-hole thing anyway. Not my idea of fun. So I was given two possible explanations: 1) I have bladder diverticulum (which is associated with Classical EDS…something I didn’t know) which can bleed, explaining the bloody urine. Or 2) I could have a renal aneurysm (which would be more possible with Vascular EDS). These rarely bleed, but it’s still a possibility. Since I’m getting tested for both of those types of EDS, I guess they’re both likely. The nephrologist believes I have the Vascular type, but I’m not so sure. I do have a family history of aneurysms though so I can’t really rule out a renal one. 

In the end, we decided to do a “watch and wait” approach. I’m completely fine with this though since I was getting tired of running through all the medical hoops. I need a break. I’m not sure I would have been willing to undergo a cystoscopy at the moment anyway. There’s something so very demoralizing about undergoing a procedure with the whole IV thing and sedation and hospital beds.. even if it is outpatient. So I get a free-pass for 6 months at which point I will do repeat blood work of the tests which I had abnormal results on. But for now…. Freedom!! Life is good 😀 

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..