The Mystery Illness Diaries: "You're Going to Feel Like You're Peeing Your Pants"

Hello, friends! I finally finished moving all of my old updates from facebook to this blog. Now I have my entire medical journey thus far right here, all in one place. On to what's been happening this week.

First, I'd like to propose a question. What is it about peeing your pants that makes you immediately feel uncomfortable? I mean, if you really stop to think about it, emptying your bladder feels pretty good. So it's not the actual act of peeing your pants that horrifies you. It's got to be the "holy crap it is only socially acceptable for toddlers to pee their pants and I'm a grown up oh my god" social factor that makes one cringe at the thought. And sure, there are some hygiene factors in there that need to be taken into consideration. But over all, I believe that if you took all social and hygiene concerns out of the equation, people would be peeing their pants like crazy just for the fun of it.

Don't believe me? That's okay. Either way, I am here to tell you that I have felt what it feels like to pee your pants without actually peeing your pants, and it feels awesome.

On Tuesday the Infectious Disease doctor told me that the people in Rheumatology wanted me to have a series of CAT Scans run so that they could see if there were any hidden little joys lurking in my lymph nodes. Upon arriving at the radiology lab, the nurses gave me about a liter of (thankfully flavorless) iodine water to drink so that they could run the CAT Scans both with contrast and without contrast. I'll just let you know right now that I don't really know what that means. I had them explain it to me, but I've had so many medical procedures explained to me over the past month and a half that it sort of goes in one ear and out the other. Anywho, they ran a series of CAT Scans on me and then, for contrast's sake, pulled me out of the tube so that they could give me one last injection of iodine for the next series of scans.

"Okay dear, now when we give you this injection, you are immediately going to feel a sensation of warmth spreading through your body. That warmth is going to rush to your crotch and it is going to feel like you're peeing your pants. JUST RELAX, you are not peeing your pants, so there will be no need to clench or tense up. Just go with it."

And with that the last shot of iodine was sent coursing through my veins! At first I didn't feel any warmth anywhere at all. My thought process went something along the lines of, "Well, this is disappointing I don't really feel anything at - holy shit I'm peeing my pants I'm peeing my pants there is PEE EVERYWHERE."

I started to giggle uncontrollably, like a little kid who has been caught actually peeing her pants. The microphone clicked on. "Is everything all right in there?"

"Yeah, I just really, really feel like I'm peeing my pants."

"Yes, well, we warned you that would happen." Click.

For whatever reason, the combination of the "spreading warmth" and the reassuring knowledge that I wasn't actually peeing my pants made the entire experience relaxing and enjoyable. It was the kind of experience I wouldn't mind having to do again. I imagined a world in which people tried to finagle their doctors into ordering unnecessary CAT Scans with Contrast, just so they could enjoy a pee-free, pants-peeing experience. It could be the cool new thing all the Youths do. There would be reality TV shows about it. Parents wouldn't understand.

After I was done not-peeing-my-pants, I left Radiology and headed up to Neurology for a follow-up appointment made back when I was having those horrific spinal headaches. Thankfully the Blood Bandage they injected to cover my leaky spine-hole has continued to do its job, and I am happy to report that I've been headache free for awhile now ♥.

By far the best part of my follow-up was when I was finally given official confirmation that I do not have MS, ALS (Lou Gehrig's disease), or any brain tumors!!!

Back when neurology first decided that I had never had Guillain-Barre Syndrome, I was still suffering from the worst of the spinal headaches and was immediately checked into the hospital so that I could undergo the Blood Bandage procedure that night. Unfortunately, this all happened so fast that I was unable to get official confirmation that some of those other big, scary neurological disorders were also crossed off the list. Since then, every doctor I've talked to has said something along the lines of "Well, I don't think you have MS, etc., but since I'm not a neurologist, I can't really give you a final answer." To their credit they would attempt to contact my old neurologists to get a final answer from one of them, but three weeks later I had still never received word either way. Talk about frustrating. It's not like I was asking them to please double check if this runny nose I'd been dealing with officially meant I had a cold. I was asking them about big fat scary things that were haunting my brain. I wanted to call up the neurologists myself and yell "For the love of god, please just answer my other doctors' emails."

The RN I was working with at my follow-up was incredibly sympathetic to this plight, and immediately pulled up all of the MRIs I had taken about a month earlier. I had never actually seen my MRIs, and it was really cool to look at my brain from all of the different angles and views. The nurse told me I had a beautiful brain (yay!) and pointed out the different areas where there would be big white spots if I did have MS or other stuff like that. Thankfully, my brain was spot-free! She took me through view after view, pointing out how different parts of the brain would look if you had MS, or ALS, or Alzheimer's, or chronic migraines, or what it would look like if tumors were present. I found myself breathing easier every time she flipped to another view and pronounced, "Wow, your brain looks great!" Maybe it was vanity, but hearing I had a beautiful brain was super awesome ♥.

When we were done scrolling through my MRIs, the nurse said, "Well, I'm not supposed to do this, but let's pull up the CAT Scans you just had done, and see if anything has come up yet!" Let me just say that I reeeeeally liked this woman. Only some of my CAT Scans had come through at that point, but all of the ones we could see were coming back healthy and normal. And, although I would really like some answers as to what the hell is wrong with me, I was glad to see that thus far my lymph nodes and whatever else they were looking at were lookin' good.

I have still not been contacted regarding the results of all of my CAT Scans. In fact, if it weren't for the awesome nurse in neurology who liked my brain, I wouldn't know anything about the results at all. I think I would normally be pissed off about this lack of communication, but I've been feeling a bit better, and a bit stronger lately, and I don't want to waste what little energy I have these days on being upset and angry. I have my first Physical Therapy appointment early Monday morning at the clinic, and while there I plan on leaving a note for my doctor to call me by the end of the day to talk about where we are going to go from here.

I am happy to report that although we are still no closer to figuring out what my Mystery Illness is, I have been feeling a little better each day. Today I even went for my first real walk! It was beautiful out, and I needed to feel some sunlight on my face. I grabbed my sweet cane, slowly hobbled down the stairs, and walked all the way to our nearest neighbor's house and back! Because I still walk incredibly slow, and because we live in the country and our neighbors are more than 50 feet away from our garage, my entire walk took me about 20 minutes. It kind of made me laugh that it took that long just to get to the Nelson's and back, but I was so stoked to have even done it that I gave a number of enthusiastic high-fives to members of my family before collapsing exhausted on the couch. Yes, I am still incredibly weak. Yes, my feet are still numb, and yes I still have to take frequent naps throughout the day. But I went on a freakin' walk today, and that is not something I was able to do several weeks ago.

While I still hope and pray every day that they identify what it is that has been attacking my body, I am incredibly thankful that I continue to feel a little bit better as time goes on. It helps give me patience, it helps keep me humble, and it helps give me hope. And it is this blend of patience, humility, and hopefulness that allows me to continue to believe that whatever this Mystery Illness is, I will beat it, and I will come out stronger than ever when it is all over. Yes, I will ♥.