Some Docs Are Just Quacks...

Today was a rough day. I've had hearing issues - tinnitus, sensitivity to noise, fullness in my ears, and vertigo for a few weeks now. About two weeks ago, I made an appointment with an ENT who was recommended by my Primary Care doc. Today was appointment day, and I was ready for some answers, and some help. Unfortunately, that didn't happen. In fact, it was, quite possibly, the worst 2 hours of the week.

I'll spare you the 6 page essay that I COULD write on the giant 2-hour waste of my day; instead, you get the cliffnotes:

I showed up at 12:30 for my 12:50 appointment - exactly 20 minutes prior, like a good patient. I had already pre-registered online, so I only had a few forms to fill out and sign...you know, forms like "We really have no idea how many things we might try to charge you for, so just sign this paper saying we can bill you for whatever we want basically...plus an extra $500...yeah, that should do it."

I was the only patient. Literally. For like, 15 minutes, until the next few patients came in. During that time, my appointment slot came and went. Yet there I sat. As the only patient. Finally, around 1:00, the cranky-faced Audiologist, who we'll call "Sue," came and took me back for my hearing test. Sue wasn't what we'll call "warm and inviting" at first, but I think we managed to coax a smile out of her once or twice. I mean, I'm sure it's tough dealing with kind, polite, tiny, brown-haired patients who do whatever you tell them to and use their very best manners at all times. That's got to be THE WORST.

Hearing test went well - no hearing loss, thankfully, and my ear drums responded the way they're supposed to respond when they tested the pressure. I was really thankful for that good news, trust me.

The Audiologist then took me to the exam room, where I was to wait for the doctor. About 10 minutes after sitting there, the most miserable looking woman, who I'll call "Olga," stormed into the room and stated with authority, "I'm-Olga-Dr. Bramhall's-Assistant-and-I-need-to-get-information-before-you-see-the-doctor." Then sat down at her little desk and turned her back to me while she typed furiously on her computer. Olga was scary. Corey and I remarked, jokingly, about how the exam room looked like a dentist's office..because it TOTALLY DID, ya'll!! It had one of those reclining chairs, and a table full of scary looking tools, bright lights, and then a very strange chair rail trim that only went around 2/3 of the room...really strange. Kind of like they just gave up, really. Got half-way through putting up trim, ran out, and just didn't feel like buying more - so they stopped. Anyway, here's how our exchange with Olga went down: Corey says, laughing, "This kind of looks like a dentist's office.." I laugh, but Olga just says, "No." (Translated to mean: "You're both a couple of morons and I hate this job and I can't believe I didn't run away with that Russian model when I was in grad school instead of getting stuck in this exam room with the shoddy chair rail job.")

Well, Olga finally finished her line of questioning, and we may have even been able to get a couple pseudo-smiles out of her. I'm sure she went back to sulking at her desk when she left, but I guess something's better than nothing.

After she left, we sat in the "not-a-dentist's-office" room for another 30 minutes, until I heard Olga and Dr. Dumbbell talking outside the room. Loudly.

Olga: "She's saying she has hearing distortion and noise sensitivity."
Dr. DB: "But no hearing loss?"
Olga: "No...no hearing loss. But hearing distortion and noise sensitivity."

Dr. Dumbbell walks in with Olga, who sits down and starts typing angrily at the computer again while he talks. First words out of his mouth: "You brought your husband? Or your DAD?" Not even kidding, people. I think he thought it was funny, but it was just really awkward. The next comment wasn't any better: "So, I guess there's really no way of knowing what this is. I just don't know." (He made THAT bold statement before his ass even hit the chair.)

The rest of the appointment was a blur after that statement...he did a couple tests for positional vertigo, and they were normal, even though the tests made me nauseous. I told him they made me nauseous, and he said, "Oh. I didn't know they were going to make you nauseous." Ummmm...they're vertigo tests. For someone WITH vertigo. Vertigo causes nausea. Soooo....yeah.

Basically, it ended with this: He had no idea what was wrong, couldn't give me any solutions, didn't have any idea what meds he'd even prescribe for it, and didn't know where to direct me from there. He and Olga looked at me and said "You just have to either figure out how to live with it, or just avoid what causes it," and then they both nodded in my face knowingly, like psychotic fraternal twins from a Steven King movie. I kept expecting blood to start seeping out of their eyes or maybe Olga to start climbing backwards up the wall, next to the chair rail that never got finished.

As Dr. DB left the room, he turned and said, "It's the first day of the rest of your life!" and I resisted the urge to crotch-kick him and tell him that he was one more stupid one-liner away from today being the ACTUAL last day of his life.

Corey and I parted ways in the parking lot, so I could go back to work and he could go pick up Lily...and it was all I could do to not cry on the way to my car.

It wasn't just the disappointment of not getting any answers...it was the realization, yet again, that I am stuck with a disease that is continually attacking my body, and there really isn't much that modern medicine can do to make it better. They can try, but those medicines will kick your ass with side effects at times. They can give us DMDs that will (hopefully) give our bodies something of a fighting chance in slowing down disease progression. Sometimes, they can give us steroids to help kick sudden or worsening flares to the curb...and sometimes, they'll actually work.

And as positive as I try to stay, there are days when the shit from this disease gets me down, ya'll...like seriously down. Today was one of those days. It's actually STILL one of those days right now. But it has helped to write it all out, and I hope you not only get a glimpse into the frustrations of what we deal with as MSers, but that you'll maybe even get a few laughs out of it.

Here's to a better day tomorrow...

The Human Pincushion Gets Her Ears Checked

That's kind of how I feel lately...a little like a human pincushion. Especially at night, ya'll...when I most want to relax and sleep. If my feet are even the TINIEST bit warm, it triggers the pins and needles in my feet to start going haywire. Yesterday, I did a little too much helping my 8 year old daughter clean her tornado ravaged bedroom, so I dealt with some wicked insomnia and the pins and needles in my feet, which really pisses you off when you're exhausted.

Oh, well...I did FINALLY get to sleep again, then woke up an hour later to go workout. I knew I'd feel even worse today if I didn't get my workout in somehow. I'm tired tonight, but I had to get some of these words "on paper" before I hit the sack.

Tomorrow I'm headed to the ENT, to see what the heck is going on with my ears. The muffled sounds, sensitivity to loud noise, and vertigo are getting worse, so we really need to figure out what's going on. They'll check my hearing and do a ton of other tests, hopefully narrowing down the cause of what's causing all these problems. Yesterday, at church, I had to wear ear plugs because the amplification was bothering me. I'm really praying for some answers. Could all just be due to the MS, or it could be Meniere's Disease, which is a disease that often runs concurrently with MS.

I didn't have it in me to make a "real" dinner tonight, so the kids got frozen nuggets, fruit and Doritos. Hey, at least they ATE, right? Oh, and they drank milk. So, there's that.

Speaking of exercising...can I just say how grateful I am to still have my mobility? I mean, seriously, people - at ANY moment, I could lose the use of my legs, arms, eyes...but I haven't lost them yet. And for that, I'm grateful. I posted a meme the other day that said something to the effect of "Exercise is a celebration of what your body can do...not punishment for what you ate." Wow, I really wish people would take advantage of the ability to MOVE, and to do so independently. I'm still able to exercise 4-5 times a week, so that's what I do. Don't get me wrong - if the jerk-that-is-MS tells me I need to rest one day, then I do. But I try to keep moving, because I know that doing so is going to keep me mobile for far longer than if I were to stay put...

Not that I don't have my moments when my legs go wobbly and I have to rest a little longer between sets...and lately, my Gilenya (the MS meds) have been affecting my lung capacity to the point that I have a hard time catching my breath occasionally. Oh, and I lost feeling in my lower half on Saturday, during squat jumps. Let me tell ya'...weirdest feeling EVER, people. It didn't feel "numb," or have that "my legs fell asleep" sensation. It literally felt like there were no body parts below my hips. Whoa...trippy, ya'll. Don't worry, it obviously came back within about 30 seconds.

So, that's about it for this week's update...just more of the same old, same old. Figuring out my new "normal," focusing on fueling my body properly and getting the exercise and rest I need...it's not easy, and I screw up a lot. But I sure do love ice cream, so there's that...

Jiggly Eyes, Wonky Ears and Jelly Legs

We decided not to go to church today. Well, I guess it's more like I decided not to go to church. I knew, after our busy day yesterday, that I'd be pretty tired today. And I was right. I've got the "jelly legs" this morning. Add that to the fact that it's chilly and windy out, and that makes for a pretty miserable me if I have to leave the house. 

So, the kids and I got up and ate breakfast, and I sat on the couch and folded the latest load of laundry. Lily's upstairs cleaning her pigsty of a room now, Eli is playing in his room, and I'm finally getting the chance to write this.

Okay, so let me explain the title of this post...

By "jiggly eyes," I'm referring to Nystagmus. Nystagmus is a condition in which the nerve pathways that control eye movement are disrupted. The Multiple Sclerosis Society describes it this way: "Nystagmus is the name for an uncontrolled movement of the eyes. They can move in any direction: side to side, around or up and down. Many people with MS who have nystagmus don’t realise they have it, as the movement has little or no effect on their vision. It’s often something doctors will pick up on when they’re testing eye movements. However, some people do notice a significant effect on their vision. Objects may seem to move back and forth, to jerk or to wiggle. This is known as oscillopsia. As with other MS-related eye problems, visual problems caused by nystagmus can vary. For example, some people notice their vision can get worse when they are stressed, tired or hot."

This past week, it was more noticeable for me than it has been in the past. I was spending a lot of time on a challenging project at work, which meant hours of working on a computer. Add that to the humidity trigger, and the jiggly eyes were pretty bothersome by Tuesday, to the point of triggering episodes of vertigo. It happened when I was scrolling on my phone, too. Even something as simple as the new movement of the buttons after I updated my iPhone - that throws me off, too. 

Along with that little fun bit, I've also had some hearing issues lately - certain loud noises sound "buzzy" in my ears, and make me want to back away from them, because it's uncomfortable in my ears. I've also noticed dizziness and vertigo when I turn my head suddenly. Neuro sent me to my primary doc last week, who put me on a steroid nasal spray to try to settle down the inflammation she saw in my ears...something called "Eustachian Tube Dysfunction." Apparently, my ear drums were "bulging outward," but there weren't any obvious signs of infection. So, I tried the spray. It didn't help. She told me to take a motion sickness medicine and try this weird thing called the Epley Maneuver, but I haven't done either. I'm supposed to call her on Monday so she can refer me to an ENT doc. She said it could be something like Meniere's Disease, which the Mayo Clinic defines as "a disorder of the inner ear that causes episodes in which you feel as if you're spinning (vertigo), and you have fluctuating hearing loss with a progressive, ultimately permanent loss of hearing, ringing in the ear (tinnitus), and sometimes a feeling of fullness or pressure in your ear." 

Honestly, I'm a little tired of medical appointments and tests and urgent care centers. I know, from talking to my neuro and other friends who have been dealing with this MS craziness for much longer, that this part will settle down eventually, once we figure out what's "normal" for me, and what's not. Of course, it is always changing with this disease...literally, from one hour to the next. But I'm still holding out hope that I'll settle into a rhythm of symptom management eventually.

We did have a great day yesterday, though, and I'm feeling good about that work project I referenced earlier. The weather was gorgeous yesterday, so we took the kids outside and let them burn off some energy and build up some Vitamin D stores. Harley went outside with us, too, and burned off some of that puppy energy. She's getting better at her training, and learning how to come when she's called, so it's getting easier to take her outside with us, off-leash. 

Hubby and I got some laundry done and I did some house cleaning. I had a GREAT workout in the morning with my amazing Camp Gladiator tribe; their support of me has been incredible, and it's what keeps me showing up to workouts when I really just want to lay in bed. They are good for my soul. 

Well, I have to go feed the kids a snack, so I'll finish out this post with a positive thought, taken from a video I posted to my Facebook page this week (link below): "They say failure is not an option. But failure should be an option, because you fail and then you get up. Then you fail again, and you get up. And that's what makes humans strong." - Muniba Mazari, the Iron Lady of Pakistan

It's Gettin' Hot in Here...

"For many years, the “hot bath” test was used to diagnose multiple sclerosis. A person suspected of having MS was immersed in a hot tub of water, and the appearance of or worsening neurologic symptoms was taken as evidence the person had MS."

This was taken directly from an article on the National MS Society website, regarding the way heat and humidity, as well as cold, influence the symptoms of MS. Although I've apparently had symptoms off and on for a few years, and they started to be noticeable last summer, I still haven't had to deal with the brunt of them in the heat until just recently. And, unfortunately for me, it isn't even spring yet. And we live in Texas. Where it gets hot. Really, really hot. And humid.

This past winter, I didn't have too many problems during workouts, because we workout outside - the cold air kept my core temperature low enough that I didn't notice any exacerbations. Recently, we've had some warmer temps and it's been pretty humid the past week. Out of the four workouts I attended this week, I had increasing issues with leg weakness at two of them. I've also had several MS hugs this week, that annoying tightness and shortness of breath that shows up at the worst times. My facial nerve pain and the neuropathy in my feet - yeah, the humidity does a number on that, too.

Fatigue - check.
Headaches - check.
Pins & Needles - check.
Facial Nerve Annoyance - check
Weakness - check.
Still staying awesome - CHECK!!

Life is short, and you're reminded of the value of every moment when you're given a diagnosis like MS. When you realize that, any day, you could wake up blind, or unable to walk - it makes you take advantage of the days when you have mobility, sight, hearing - things that demyelination could take from you at any moment.

Today, after recovering from a crazy awesome workout with an amazing group of athletes, Corey and I took the kids (and the dog) to the park. It's just across the street from our house, so we walked. The weather was just too good to stay home, especially since we've had about 87 days of rain here in North Texas. Later, after their naps, we took them out again, in the backyard. They played together while Corey and I cut the grass. (That's what 87 days of rain will do for you.) And that's when it happened - I fell.

I fell, and it had absolutely nothing to do with MS. I was backing up with the push mower, to get one last little strip of grass by our hammocks. Unfortunately, my back-up cameras were off and I forgot to turn around and check my surroundings - so I backed up into the fire pit, tripped backwards over the edge of it, and fell smack on my rear in a pile of old, half-burned sticks. Yep. Fun, fun, fun. Eli got a little freaked out, standing a few feet away crying, "Mommy!! Are you OKAY??" Yeah...it was fun. I have a big bruise, but it could have been worse. Now, my EGO, on the other hand..

Oh - my neuro's office called in some headache meds for my daily headaches from the Gilenya. They're only helping a little, but I guess that's better than nothing. I've also had some hearing issues/tinnitus show up over the last week, but not sure whether it's MS-related or not. I just know that I had to move away from someone because their voice was reverberating in my head, and it was freakin' uncomfortable. So, we'll see...it's just another crazy way that this disease rears it's ugly-ass head. Meh.

But it was nice to end the week surrounded by friends and family, soaking up some Vitamin D, and enjoying the fresh air. I may be totally wiped tomorrow, but you know what?

It was absolutely worth it.