Enough with the Doctors Already!!

Seriously...want to know why it's been 21 days since my last post? (And, no, I haven't been in rehab.) I've been a little busy with managing the craziness that is an MS diagnosis.

We're talking doctor after doctor after doctor...and it's a little tiring, not gonna lie. In the past 21 days, I've had a doctor's appointment with my Primary doctor for shortness of breath, a trip to the ER, a spinal MRI, and more appointments are on the way. Much of my time is spent on the phone with medical offices or hospitals or labs; if I'm not on the phone with them, I'm emailing them, or going to see them. Ya'll - it's EXHAUSTING. I'm convinced that 25% of the exhaustion MSers feel is that of having to spend so much time managing a chronic illness. Seriously. I bet if we didn't have to do all that shit, we'd probably have just a bit more energy.

Anyway...

So I've been having issues with shortness of breath while at rest, and during conversations. Never while exercising or training at workouts...just when sitting, resting, or having a long conversation. My doc had me come in to see her, so she could run some labs, do an EKG, and have me do a Spirometer test. EKG was fine. Labs were a little wonky, but all to be expected when you're on a DMD like Gilenya. I registered a "poor effort" on the Spirometer, so she advised me to check with my Neuro on whether they believed it was from the meds. (This is where I kind of made my OWN call, since I know my body better than the Neuro, and I'm not really in the mood to change my DMD just yet. See, I have had these shortness of breath issues for about 6 months, and I only started Gilenya in February. So I don't think it's from the Gilenya. I think it's something else...)

So, neuro called me and said she wanted me to redo the Pulmonary Function Test one more time before I see her on May 7th. My primary doctor said I should get the more extensive PFT done outpatient at the hospital, instead of coming to her office and just doing the Spirometer. I'm scheduled to get that done this Wednesday, from 3-5. After that, I'm headed to see a Pulmonologist on the 30th, so they can look at the PFT results and do their exam and try to figure out what the heck is going on with my breathing.

MEANWHILE...I had an episode last Tuesday. The night before, I had been on the phone with my Mom, and I had gotten so short of breath that I was dizzy and felt faint. So, on Tuesday I called my Primary doc and asked what they wanted me to do. (Point of note here: When calling your doctor's office, it's generally not a good idea to lead with "I'm having issues with shortness of breath.") After a few calls back and forth, my doc finally said "If you can't get in with the Pulmonologist today, then go to the ER." What the actual f*ck? Really?? The ER?? Ugh...okay, fine.

So, I called the Pulmonologist. "Nope. We can't see you without an order, and we couldn't see you today even if we HAD an order."

Proceed to ER. Do not pass go. Do not collect $200.

Fine, so I drove all the way to the ER, stressing out the entire way, which made my MS flare up and I arrived shaky and barely able to stand up or hold the pen at registration. A very tall, awkward man took me back to triage, then quickly got me in a wheelchair and tried to stick oxygen in my nose, which made the shortness of breath worse. Thankfully, my oxygen levels (O2) were fine, so I didn't really NEED the oxygen. When he wheeled me back, there were about 3 other people in the room waiting for me. It felt weird. Who the hell is this woman being wheeled back to an ER stall, with oxygen tubing in her nose?? This is certainly not the badass I see myself as...this is something else entirely. I didn't like it at all.

Oh, well...I was following the doc's orders, like a good little patient. They ran labs, kept me hooked up to monitors, did a chest x-ray. There are two things they were checking for, which I asked them to check for when I arrived: Metabolic Acidosis and Diaphragm Weakness. Google them, because they would take a while to explain. Basically, they can happen with MS sometimes. For the Metabolic Acidosis, the main test is an arterial blood gas draw, which they did. When they do routine labs on people, they take the blood from a vein. With an ABG test, it's from the artery. Sometimes, they can accidentally hit a nerve in the arm when they do this. Well, that's what happened with me. From the time of the appointment through that night, my arm was in horrible pain - from fingertip to shoulder. It was gone the next morning (the pain, not my arm...my arm was still there). With the chest x-ray, they were checking for Diaphragm Weakness, but mine looked fine. X-ray was unremarkable...which is a fancy way for radiologists to say "I don't see jack shit on this thing." My blood pressure was really low, hovering around 92/14 for most of my time there. Not sure why, or if it's connected to the shortness of breath. I'm hoping the Pulmonologist can help me with that question.

The only thing they said they noticed was that I had a UTI...now, UTIs can go really bad, really quickly with MS and DMDs. But I'm on antibiotics now, so we're all good. (It would seem that this infection was part of the reason for my EXTREME fatigue over the past few weeks...apparently, bladder infections sometimes manifest this way with MSers - fatigue, feeling "off", symptoms flaring.)

Overall, the nurses were really nice, although the in-room bathroom had no toilet paper or paper towels. When I send in my payment, I'm going to add a sticky that says "Ya'll need to use some of this to go to Costco and stock up so your patients have some way to wipe their rear ends and wash their hands."

Four hours later, I was discharged and went to get my boy at daycare.

I had a spinal MRI on Saturday, this past weekend, with and without contrast, as per usual. They were looking at my cervical and thoracic spine, checking for any lesions that may have developed since the first spinal MRI last November. Today I picked up the report and we're all clear! No lesions in the spine yet, which is AWESOME!!

So, for now, we're just waiting for the rest of the tests and appointments to try to figure out the breathing issues. Then I'll follow up with my neuro's office for a routine check up on May 7th.

See now why it's so exhausting to keep up with it all? You truly have to be your OWN advocate, too. You have to educate yourself, and be confident enough to question your doctors (respectfully when at all possible), and ask for the things you want/need to feel better. No one is going to know your body the way you do.

This past weekend was full of wonderful moments with my babies and my hubs. We had so much time together. It was amazing, and I loved it. So grateful for their unending love and support!

I'm moving along in my Camp Gladiator training process, and I'm LOVING the chance to have fun doing what I love by investing in others and helping them discover not only their OWN strength, but the strength of the community that is CG.

Have a great week, ya'll!

Brain Pics, Migraines, and Easter Fun!

It's been exactly 13 days since my last post. In a previous life, I might have felt bad about that...you know, letting so much time lapse without posting, wanting to "be consistent," blah, blah, blah. Not anymore. The "new" Ella-Kate has realized that #1: I have no one to impress, and #2: There are more important things than blogging these days.

Between figuring out ways to deal with the symptoms that the MS Monster hands you every day, to juggling a full-time job with mothering two kids, to training to become a part-time Camp Gladiator trainer, to keeping the dog alive - there are a lot of things on my proverbial plate right now, and blogging is usually not at the top of that list. Here are the most recent updates!

Since the ENT didn't find anything to explain the hearing and increased vertigo, my neuro sent me for a new brain MRI. They always do MS MRIs with and without IV contrast, which is not really fun, but it isn't horrible. You get used to these things after a while. I counted up the total number of MRI scans I've had in my life, and I got quite a few over the years: 1 for my knee, 3 for my spine, 1 for my sacrum, 3 for my brain - 8 total. You get used to being very still, even when it gets REALLY uncomfortable...or your nose starts to itch.

This MRI was set up with an MS protocol, which was not the case with the November MRI, which showed the lesions that led to my diagnosis. I also got this one done at a different location, so it was a different machine. This led to the two scans being somewhat difficult for me to compare, since this one was so much brighter (and the views were different). Thankfully, the report was done by lunchtime the next day, so I went by and picked it up at lunch. Usually, I'm pretty good at breaking down the terminology in these reports, thanks to my years working in a medical office setting. This one wasn't that easy, though. Finally, I heard back from Emily (my favorite nurse at the neuro's office) and she told me that they "didn't see any changes," which means the MS is "stable" at this point. This also meant they found no reasons for the hearing/vision/vertigo issues. They said they could prescribe meds if it didn't "go away," but I said I would just tough it out. You get sick of adding new meds to an already packed medicinal regimen, so sometimes you just choose to live with it. That's how I am with  my nerve pain. Two of the three nerve pain meds caused bad reactions in my system, so I'm not really anxious to try the third med. I just do what I can with the meds I have for now...because you get tired of feeling like a test subject after a while.

I've been having horrible migraines here and there...one lasted an entire 24 hours, and it actually got WORSE when I took the prescription Imitrex that they gave me for my headaches. I've read this can happen with Imitrex, so I wasn't surprised. I had to leave work and go home for the rest of the day...it was so horrible. (Do you see now why I don't like adding new meds??) I've had more since then, and they suck, ya'll....but I'm just trying to handle them with caffeine, ibuprofen, tylenol, whatever I can while at work or out and about with the family. I try to minimize activity when I have them, but that isn't always possible.

Here's the thing, guys: Sometimes, MSers just get headaches. And sometimes, we have hearing issues. Or vision issues. Or leg weakness and pain. It just happens with this disease. There isn't always a set pattern of when it will happen, and it's usually not very predictable. I like to say that the one predictable thing about MS is its unpredictability. Maybe you have to cancel plans because you suddenly feel like shit...it's not personal, it's just the disease. It doesn't mean we just changed our minds and want an "easy out" for a prior commitment. It just means that we got thrown an MS-curve ball, and now we have to adjust for it. It's just the way life goes.

My friend Alex King posted something on her Facebook page today about how people with MS sometimes handle their disease, with a "poor me," attitude. I responded with this (and she and I agreed I should blog it, lol): "It is definitely a tough adjustment, and I alternate some days (in these early stages of DX) between being pissed off, sad, happy, relieved, depressed, and exhausted...mostly exhausted. LOL...It's been a really hard period for me to get used to this being my present and my future. But, in the end, life goes on all around me - with my babies, my job, my husband, my passions in life. I can either give up and take up permanent residence in a place of sadness...or, I can live with the acceptance of this roller coaster as normal, and try to make the most out of all the good moments. I'll do what I can, for as long as I can, until I can't anymore."

That's it, folks. That's how this disease works. Just because we take Disease Modifying Drugs doesn't mean that we will necessarily start feeling better, or that our symptoms will go away. Our symptoms are usually the result of damage that has already been done to our nervous system. Until they find a cure for MS, not all of this damage will be undone. My DMD is supposed to be giving my nerves a break from the constant attacks of my immune system, so that (hopefully) a few lesions may have the chance to remyelinate...or at least I won't get as many new lesions. But the symptoms will remain, in most cases. It's just what happens in the course of this disease...and, as much as I hate it, it is what it is, to be honest. I just appreciate the "not so bad" days that much more.

Like this past weekend with my family - we made so many memories this weekend, despite the migraines and nerve pain and crazy weather!

On Saturday, we took Lily and Eli to the park where Lily had a play date with her classmate, Alexandria, who she told me is now her "BESTIE." This was good for me to hear, because she's been struggling with friendships, apparently. Later that evening, we took the kids to church for Easter service, then had some Chipotle for dinner. I love their bowls, and they're not too bad for you either. After the kids went to bed, Corey and I stuffed Easter eggs and filled their Easter baskets for the next day.

They slept until about 7:30 on Sunday, when we got them up to see what the Easter Bunny had brought for them. Eli told Lily that the Easter Bunny came down the chimney, but Lily swore he came through a window. Every time I would refer to the Easter Bunny as "him," Lily would say "or her." She is the epitome of girl power...she comes by it honestly, though.

We then went out into the cul-de-sac, where Corey and our neighbors had hidden hundreds of eggs for our kiddos to find. We did this last year, and they all love it. Lily helps the little ones find eggs for their buckets, and then they have candy for about 6 months afterwards.

After the egg hunt, we got dressed and went to meet our friends for Easter lunch. This family was the first family we really grew close to after moving to Texas 5 years ago. We were  new to the area and had no family here, and Tim, Jana and their kids became our Texas family. Jana was the first person to teach me how to shoot a handgun at the gun range, and that was not only how we met, but it was the start of an amazing friendship. They are now the kids' guardians, just in case Corey and I die in a skydiving accident, which would be horrible of course.

Lunch was great, and then we came home for naps (yes, I also took a nap, naturally), followed by a short trip to Wal-Mart (ugh...I seriously hate going to Wal-Mart these days), and then back home to prep for the week.

Then, this morning, I assisted at a CG workout with my friend, Sara. I'm in the middle of the training process to become a part-time/substitute CG Trainer. I won't do it full-time, but I'll help out with camps when a regular trainer has to be out for any reason, or if they anticipate a large crowd and want extra help. I'm so excited about this, because helping others realize their full potential has been such a passion of mine for so long. I've literally been working towards this for about a year and a half, and when I got my MS diagnosis, I realized that I just needed to DO it. So, I did...more on that whole journey to come!

Have a great week, ya'll! Hopefully I'll get another post in before the week is up...:-)

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.

A Not Too Shabby Weekend!

I bid farewell to my brother this weekend as he left our house to board his flight back home to Virginia. I haven't seen him in 6 years; he is married to a wonderful woman, and they have 3 great kids. I was pleasantly surprised when I got his email, a few weeks ago, about coming to see me for a weekend. Next time I'm hoping that he brings my sister-in-law with him!

He got to meet our son, Eli, and both kids were completely taken with him. They played and chatted, and even snuggled on the couch with him. It was awesome to see, and it melted my heart. Getting to sit around and talk about our memories, share jokes, laugh over stupid movies, and worship together at church was such food for my soul.

It rained for most of the day on Saturday, so we just sat around, chatted, and watched some TV. Then, later in the afternoon, the sun came out and we got to enjoy some time outside with the kids. We are ALL a little tired of the rain and humidity here in North Texas. For many people with MS, our symptoms worsen during bad weather, and I am no exception. The weeks of rain and humidity have made my nerve pain, fatigue, headaches and restlessness much worse than normal. 

But over the weekend, the weather broke, and my symptoms seemed to lessen somewhat. I still had some pretty crazy nerve pain and pins and needles on Saturday, then I didn't notice it much at all on Sunday. I didn't have any leg weakness or pain during church. We took my brother to downtown Dallas, where we went to lunch and toured the Sixth Floor Museum in Dealey Plaza. Not once did I feel weak or in pain, and that was such a blessing. I got to enjoy the entire day with my brother, without being sidelined by MS. I did have a headache for much of the day, but I'm pretty sure that's coming from the Gilenya adjustment. It finally passed in the early evening. 

It was so nice to finally get somewhat of a break from the symptoms that have been messing with me for so long. Oh, don't get me wrong - the cognitive shit never goes away. I still have memory issues and I still have a hard time coming up with words pretty regularly. I still drop things. But I had something of a break in regards to pain for the few days that my brother was here, and I was so thankful for that. 

As my friend Alex King says, the bad days with MS lead you to really appreciate the not-so-bad days, and this is so true. 

Oh, and I also signed up and created a team for the MS Muck Fest in Dallas on September 29th. It's a 5K mud run that benefits MS research. I posted about this event on the local page for Camp Gladiator, the group/company/family that I workout with, and SO MANY people have said they're interested! Trainers are pulling people in, encouraging them to sign up, and I am so encouraged by this incredible outpouring of support! As a somewhat invisible illness, MS can be a very isolating disease...it can be easy to feel overwhelmed and lonely in our fight to live a somewhat normal life. Having the support that I have through this CG family has helped me so much, and seeing the positive response to this race was just one more way that they were coming alongside to fight this MS madness with me. 

So, overall, an amazing weekend with family, and a break (of sorts) in the MS pain. I'm still waiting to hear back from my doc about these headaches that just won't go away, but I'm enjoying the hours that are free from all the other nerve pain. 

To all of my friends and family who are praying for me (and our family) through this journey - Thank you! I believe in the power of prayer, even when it doesn't bring the healing we desire. I asked a few friends for prayer on Sunday night, when my headache wouldn't pass, and within about 20 minutes of asking, the headache was gone. So, we appreciate all of your prayers, and all of your support.