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...:-)