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!