I just had to go and say it, didn’t I? I just had to bring up the fact that last time I went to Bethesda for a big huge round of tests, I cried hysterically in the hallway. I just couldn’t have kept my mouth shut, could I? As you might guess, this has something to do with the title of this entry. Yup, history repeated itself today, and let me tell you, it sucked.
It didn’t start out sucky. In fact, it started out fairly well. On Tuesday I received an email from Dr Shenenberger, the doc that I mentioned in my last post, the one who first diagnosed me. He found a spot in his schedule where he could squeeze me in, and it was for the very next day at 1:00. I was thrilled. I figured, if anybody could figure this thing out, or at least know someone who could figure it out, it’d be good ole’ Dr Shenenberger. Also, it had been several years since I last saw him, and I’ve always wanted to take him a present and a card to show him how much I appreciate all his work to find that diagnosis for me. So I got him a box of Godiva chocolate, wrapped it up all pretty, wrote a nice card, and I was all set to go in.
I was eager to see him and get this thing figured out quickly, but when I woke up this morning, I felt like absolute crap. I was nauseous, hadn’t been able to eat a thing, and my head felt like it weighed so much I’d fall over on the floor at any minute. But before having to wait too long, out came Dr Shenenberger and after a quick hug and hello, we went back to the exam room.
He at least answered some questions. The discoloration, he says, is normal and that he sees it all the time in patients who – like me – have for some reason or another gained a lot of weight really rapidly. And he said my almost 30 pounds of water weight in less than a week certainly qualified. So at least now I can stop worrying so much that somehow i was being turned into an alien off Star Trek (seriously, it looks that weird.)
But he also brought up some other things that I might have to be worried about, and that we decided needed to be tested to check out. Just before this whole Dercums Disease thing took off, I had a really horrendous case of mono back in 2004. I was SO bad I can’t even describe it. Anyway. After conferring with Dr Shenenberger, as well as with a doctor out in California who’s researching Dercums, we’re thinking it’s a possibility that the mono has come back. How incredibly horrible would that be? As bad as the mono was last time, I cannot imagine having to deal with that ON TOP of having Dercum’s Disease. It was so debilitating that i was literally stuck in bed for months. Not that I’m exactly leaping up out of bed every morning now, but come on, I already have enough crappy health stuff to deal with, I don’t need anymore.
But clearly, something’s going on. So Dr Shenenberger ordered a bunch of blood work and I’ll hopefully be able to see another handful of specialists some time soon, i.e. Infectious Disease and maybe Gastroenterology. With all of that decided, it was time for me to head off to the lab, where we thought it’d be quick and simple to draw some blood thanks to my newly installed port (which I mentioned in two posts ago… oh so convenient, isn’t it?)
So off I went to the Hematology clinic, where the RNs are trained in how to properly access the kind of IV port that I have underneath my skin on the left side of my chest. Well… unfortunately accessing the port didn’t go so well. The RN who was attempting to draw my blood was, um, shall we say, a little less than delicate. In short, as she tried to push the needle into the port, she put so much pressure on my skin that she popped open some stitches in the incision leftover from replacing the port. Suddenly I was bleeding quite a bit. And as if that weren’t bad enough, we weren’t getting much blood return out of the new port that should have been working perfectly. And as if THAT weren’t bad enough too, the nurse wouldn’t listen to me about how when extracting blood from the port, you have to pull back slowly on the syringe. Well she grabbed that plunger and pulled back with all her might as fast as she could, which made me feel as if my entire heart were being forced through a very small vacuum and pulled right out of my chest. It hurt like hell and she wouldn’t stop. I kept asking her to go slow, but she kept arguing with me, and because of the pain I was in no condition to argue because as she kept yanking on the syringe, I kept losing the ability to speak through the agony.
Finally, the pain and the frustration just got to be too much. I couldn’t talk anymore because all I could do was cry. Between the immense pain in my chest, and the unbelievable weight preying upon my emotions as I thought about that beautiful incision that Dr Georgia had worked so hard on, the fact that it popped right open and was now bleeding all over my chest… all I could imagine was how huge my last scar was, how horrid and ugly and decrepid it looked. And as I sat there, with that woman pulling back on that plunger, staring at the opening in the incision, I saw in my minds eye that scar doubling, tripling in size. And not only that, but of all the things that have gone wrong, and all the things that continue to go wrong, I just broke. Everything in me broke.
I didn’t care about the blood work anymore, I didn’t care about the tests. I just wanted it to stop. I begged for the nurse to pull out the needle and she finally did after getting only two out of the five tubes of blood that we needed. I didn’t care. I wanted it to end, and I honestly wanted to quit.
It’s amazing to me how our brains decide what that last straw is, that last mistake that ends everything, that breaks your will, that makes everything in your body scream, “I’m done!” Sometimes that last straw can seem so small, so insignificant compared to every other giant hurdle you’ve overcome. But it doesn’t matter. It’s just that last straw, and no matter how many times you tell yourself, “I’ve conquered bigger things than this,” it doesn’t change a thing. Because when that incision split, it didn’t just bleed, it split everything open, exposing all of the raw emotions leftover from having to overcome hurdle after hurdle after hurdle, never finding the time to heal in between. It split it open, wide for me to see inside, and I saw that I was tired, that I was mad, and that there didn’t seem to be any end in sight.
I tried to clean my face up and stop the tears, because Dr Shenenberger wanted to see what had happened. I had a long walk back to his office, but it didn’t matter. It was obvious that I’d been crying, and the poor guy, he did his best to cheer me up and patch me up. But since he wasn’t the one that had operated on me, he really wanted me to have Dr Georgia take a look. At this point it was already quite late in the day, but my Mom made one last phone call to Dr. Georgia’s Interventional Radiology department at Bethesda. Thankfully – THANKFULLY – he was still there, and he was horrified by what my Mom told him. He told us to come down right away. So I got a temporary patch, and then had another long walk with which to dry my tears.
Again, it didn’t matter. I’d suppress it, it’d come back up, again and again. I was so scared; scared of the scar, scared of the tests, scared of what they’d prove, scared of what else was going to happen. But thank heavens, there are good doctors in the military, and Dr Shenenberger, Dr Georgia, and the rest of the people at Interventional Radiology are proof that good people can make a difference, even if it means cheering up an impossible patient.
When we got to Interventional Radiology, their operating room had already been locked up. Most of their staff was walking out the door. But one nurse, one tech, and Doctor Georgia stayed behind. Just for me. I got back onto the table underneath the giant fluoroscope because Dr Georgia was really bothered by the fact that the port wasn’t giving proper blood return, especially considering how new it is. He checked it out under x-ray, and much to our surprise, not only were there blood clots stopping up the system on both ends – one in the port, one at the end of the catheter – the catheter itself had also decided to wriggle around inside and make a little s-curve in my chest. Of ALLL people, only my chest would decide it needed a slalom. Shame on me.
It took quite a long time, but Dr Georgia was able to fix the port up. He straightened out the S-curve as best he could without opening me up, and after a lot of injections and fiddling around, he managed to dissolve the clots and get the blood flowing again. And best of all, he promised that from now on, no one would try to draw blood from me but him. That’s quite a promise, I think, considering normally techs are the ones who draw blood. But not me, I have a fully trained, highly respected and much in demand doctor as my own private blood draw-er. He was so mad and frustrated to see his work – and his patient – damaged by someone who clearly wasn’t doing their job properly that he told me he’d make sure that never happened again. He’s a nice guy that way, and a fantastic doctor.
After we got the port working, he did his best to fix the popped incision. Thankfully it looked like the internal stitches were still holding the inside together, so his three layers of stitching turned out to be absolutely vital. The top was still a problem though, especially considering how badly I scar. So he cleaned me up, all while telling me jokes and trying his best to cheer me up. He ultimately decided to steri-strip the whole thing together, which should hold the incision together as safely as possible, but that means I’m not allowed to shower for a while. Eww. Ah well. Small price to pay if it means I don’t end up with a gigantic scar.
By the time we were done and I got out of the operating room, everyone else was gone. They had all stayed well past their time to go home, just for me. And as I was walking out into the hall, Dr Georgia smiled at me, did this funny little move with his arms, and said in a sing-song voice, “Well, just another average day with Dercum’s Disease.”
It made me laugh, but he’s right. This is average. And it scares me that “average” means that anything and everything that can go wrong, will. I think they should rename Dercum’s Disease to “Murphy’s Syndrome”, because it follows Murphy’s law better than anything I’ve ever seen before. And if it weren’t for those wonderful doctors at Bethesda who are always there to pick me back up again, wipe my tears, and patch me up, I would have given in to those last straws a long time ago. Now, even though I’ve spent my entire day at the hospital after what should have been a simple visit to dermatology, I can still tell myself that hey, I can handle one more last straw. And I think that’s what it’s going to take. Just one more. If I tell myself that enough, eventually maybe those last straws will run out and I’ll have gone through all of the hay that this damn disease can throw at me. Or so I can hope.