...and I'll take a side of Hashimoto's with my MS, thank you

Yeah, you read that right...sigh. Points for my cleverness though, right?

Celebrated my 2 years MS-iversary on December 1st:)  I didn't want to post yet, because despite beautifully clear MRI's, I knew something was still off. 

I had c-spine and thoracic MRIs in late November. I did get my favorite radiologist, which is a bonus, I've seen him enough he recognizes me--that's a fun bond. 

I enjoyed Tchaikovsky's Nutcracker Suite as my brain and spine were scanned, good times. It was way better than the singer-songwriter request, a.k.a Cat Stevens hour (my personal hell), a mistake I will never repeat. 

Despite my benadryl & steroid prep, I still had a slight allergic reaction--I was really red and a little itchy. I think it's just being in a tube for an hour:) They did release me to go home, rather than the ER, so that was awesome!

The MRI's were read quickly and everything is blissfully quiet on the CNS front. 

I am so grateful. It could be so much worse, but it's not.

I've had a lot of time to reflect. My first year of MS was a balance of panic with faith and knowledge. It was grappling with a disease I knew nothing about, that could turn on me at any moment. It was finding my footing on a slippery slope.

Year 2 was all about acceptance. I found peace in my diagnosis. A bone-settling peace and confidence in the various treatment methods I have chosen. It's a good place to be.

I met with my awesome neurology team, Kelsie Montgomery, PA and Dr. DeSabrio (rockstar). I love that Dr. D always pops in and visits with me. I love that they review my records the day before and are totally up-to-speed on where I am. 

Long story short, I'm still in remission and I'm doing well. Yes, I still do Copaxone, although I have the option to move to Tysabri. It's up a tier in medication, studies look promising, but it can have some potential scary side effects--no shots though! It's an oral med. I decided to wait on deciding. Maybe in the summer...it's such a big decision to change meds. I need time to study and mull it over.

Neuro team is happy with the lifestyle changes and supplements I'm taking. I happily reported I feel great...except for the horrible joint pain/fatigue/nausea I feel every 4-6 weeks. It totally grounds me and it's awful. I can take Aleve to power-through, but it's awful. I gave my ideas: MS flare, medication reaction, etc.

I learned:

• Joint pain is NOT an MS thing...if it wasn't anything else, it would be classified as an atypical manifestation without a researched explanation.
• Joint pain is NOT a Copaxone thing
• Team Neuro is positive I have something else going on...so more blood tests.

Initial testing (for Lupus, RA and inflammatory markers) didn't reveal anything. I saw Paradela, my bulldog of an internist, because as I told her, she can solve a good mystery.

Blood tests are back (drumroll please)...

I appear to have Hashimoto's Disease, possible Parvo and low iron stores.

Sigh.

What the heck is Hashimotos?  Isn't Parvo a dog thing??

I've been fighting more fatigue than I'm used to, freezing most of the time, having voice issues, losing hair (insert sad face), suffering from killer joint pain, etc. I'm pumped to have Hashimoto's because hopefully there will be a solution!! The days of coming home and being too tired to even eat have got to stop.

This also means these awful symptoms are NOT MS, which means that my MS really is under wraps, fantastic!

Not fantastic is knowing that my thyroid is attacking itself and screwing up my hormones...this explains a lot. 

Not fantastic is getting retested in 6 weeks before I look at treatment options.

Not fantastic is knowing I also might have a dog disease. Just kidding, human Parvo is an anti-inflammatory bug you contract as a child and it ebbs and flows. Don't even know what's going on there. Or the iron...well, I don't really eat much meat, so...yeah.

Game plan is to revisit my nutrition. I do a strict anti-inflammatory: no gluten, sugar or dairy...BUT, I'm lazy about it, often skip meals (don't have much of an appetite anymore), and eat what's quick--which might include (blush) my secret favorite, classic Lay chips. I need to plan and tighten it all up. I'm obviously eating something that's irritating the inner parts.

...and the waiting game, again.

There are also more positives than negatives, always, but I'm still a bit discouraged. 

Apologies to people. Sometimes I'm so tired, I act stupid or rude. It's not purposeful. Yes, I still battle depression, but it's been a few months since my last bout: yay! Yeah, sometimes I bail out of events at the last minute. This is why. Thank you to so many dear friends and family who don't hold it against me.

Yes, still teaching and still working on my Master's degree in Education and Educational Administration. I'll graduate in May and probably cry in relief.

However, my faith, the support of my family, and my insatiable research skills will see me through. I've grown so much emotionally and spiritually over the past few years; I'll be ok.

So, serve up my MS with a side of Hashimoto's, sprinkled with Parvo (yuck) on top. I've got this.

Here I am at 2 years. Little bit lighter, and smiling!

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...and I'll take a side of Hashimoto's with my MS, thank you

MRI Results and MS-Inspired Poetry

I have not felt well, when I usually do. The prolonged infection and subsequent 4 (ugh) antibiotics have left me depleted. Numbness is surfacing more, I've had intense fatigue, frankly, it's been scary. I knew something was off, I have just prayed it's not a major relapse or disease-progression. I was kinda hoping to be one of those patients who don't relapse...wishful thinking.

Luckily, I went with my gut and got into DeSabrio, my neuro, right away. MRI's were ordered and scheduled for May 21st.

Shout-out to the radiology team at DRMC:) I’m there enough that they recognize me and are unfailing kind & compassionate. Lying in an MRI machine gives you time to think. Thanks to therapy, I've been able to create a safe space in my head where I can go when I'm feeling trauma or stress. I was able to escape there and had the words come to me. I am a writer, a poet--but I've been avoiding doing much writing about MS. However, writing is therapy, and I need to process all this and thought I would share.

The MRI went well, no reaction to contrast this time! I read the results right away and was confused by the activity in my C-spine. Brain is in good shape, no changes--excellent news because I kinda dig my smart mind.  However, my C-spine showed activity in the lesions, but no disease progression or new lesion growth. Luckily, Kelsie Montgomery, PA, called me first thing this morning. My scans came in on the 22nd. She and DeSabrio (my neuro dream team) analyzed results and made a plan.

Turns out it was really good I got in when I did. My lesions are irritated, mad, angry and are flaring up. This is causing the subtle symptom increase. So, it's a mild relapse. Minor. Small. Present.
I never wanted to relapse.
After a teary call to Justin, who reassured me I'd be ok, and reaching out to my support system, I shored up and focused on positive mindset and my faith.
Yeah, it's disappointing.
But, it's out of my control.
It's probably due to infection/antibiotic frenzy, but there is no way to know.
I do have a very proactive team and I'm going to be ok.
As my friend Jen told me: "this is a speed bump, not a brick wall."
So...
plan is to report to the hospital's infusion clinic for the next 3 consecutive days. I'll be receiving an infusion of the cursed, yet curing, Solu-Medrol mega-roid. Infusions should last 60-90+ minutes. My friend, Jenica, frequents the infusion clinic for her medical conditions (we have sister diseases) and will be there, which will be nice to have an insider guide! After the 3 days o' wonder, I'll be on a low dose steroid taper for a week and see my neuro team mid June to reassess. If I relapse again, it will be a new treatment plan, which I'm hoping to avoid.

All is well. 
I'll keep marching forward with faith.
It's perfect timing to heal. My last round of Solu when I was diagnosed in 12/16 left me weak and reeling. I'll have the summer to heal and I will be ok.
My continued thanks for the prayers and support. 
I've got this. 

Musings on my MRI
5/21/2018
People who don’t know MS 
don’t give me the look. I can’t fool the 
radiology department though. 
The look is equal parts 
compassion and sorrow—
an unsettling sense of
validation. 
Slowly I lower myself on to the
sliding slab, encapsulated with a 
mask over my face, 
a blanket covering me like a shroud 
to stave off the chill,
arms pinned to my sides as
I’m moved into the tube—
as narrow and 
quiet as a tomb.

I’m instructed not to move as I
attempt to lose myself to classical
music soundly loudly in my ears.
But not even “Moonlight Sonata” 
can drown out
the swelling cacophony of the
machine’s jackhammers, whirls, 
banging and
vibrations 
searing beneath 
my skin, bones, 
tissue and veins
creating a picture of the battlefields
where my body has attacked 
itself, leaving ragged tears 
in my brain and spinal cord—
delicate nerves
raw, exposed, confused
sending an SOS 
throughout my CNS.
Fruitless distress calls
misinterpreted, 
manifesting symptoms I 
cannot control.

Contrast is injected,
a veritable floodlight
illuminating the creases of my brain,
shining through opaque density of 
my spinal cord, looking 
for evidence of destruction. 
Still unaccustomed to this brave
new world, grasping to
understand the reality of it all;
I rise up,
thanking the radiologist
walking slowly to my 
car against a 
darkening sky.

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MRI Results and MS-Inspired Poetry

New MRI's and A Day in the Life...

Ok, this is all launching later than expected, but hey; with MS you learn plans change...frequently. Just pulling out of a ten week long infection (sinus and bronchial) that took 4 antibiotics, 3 doctors and a whole lot of prayer to finally cure. I am finally feeling normal!! The last antibiotic, Levaquin, was a heavy hitter where I was dealing with extreme fatigue and full-day nausea...like morning sickness without the cute baby in the end. It made me so appreciative and so grateful for the good days.

The problem is increased numbness. A visit with my favorite neurologist led to a fact-finding mission. She knows I'm a girl who likes a plan, so a plan we made. I will get new MRI's on Monday, May 21st (to kick off my birthday week, ha ha) to see if the MS is active again or if the numbness is a side-effect from so many antibiotics and a prolonged infection. Infection is a big NO if you have MS because it messes with your already less-than-stellar immune system. I was so shocked to get "normal-person sick" because I'd been perfectly healthy for over a year. I thought surely my vitamins and healthy eating would protect me forever, but that wasn't the case. Following the MRI scans will be a delightful nerve conduction test--I'm not even commenting on this one yet.

MRIs are still so weird and unpleasant for me. Wish me luck tomorrow!

So, in case you are wondering, here is what a day in the life with my MS looks like. Remember that MS is different for everyone and changes throughout your lifetime. Here is life today...

I wake-up early throughout the school year. In fall and spring, when it's not as cold, I'm up at 5am to walk. Right now, I'm rolling out of bed closer to 6am because of the last couple months.

In the summer I'm up around 7am-8am and leave for an hour or so hike or bike ride. I LOVE IT! I can't regulate my body temperature, so once the temperature is around 85, I cannot be exercising in it. I'm fine to run errands, walk around until about 95 then I have to be inside. It's a pain, but I've learned heat makes me numb, stupid (cognitive fog), sluggish and I can't cool down. Likewise, cold is an issue. Cold, for me, is intense pain, shaking, can't warm up. Stupid MS. Obviously I need to live somewhere with a constant 75 degrees. Hawaii anyone?

Alas, I digress--back to mornings. I'm sore, a little stiff, but limber-up pretty quickly. I pray, stretch out my neck and move my feet around a lot to make sure I have sensation before I get up. I mean, I did have a good 6 weeks without feeling from my calves down back in 2016, so you can't blame a sista for checking. I give thanks I can walk--like for real, I don't take it for granted. I have a lot of body awareness and do a quick scan to make sure everything is normal.

This matters because MS symptoms come and go--daily, even hourly. However, if a new symptoms stays for 48 hrs, you might be looking at a relapse and that's a big deal.

Let's be real, I was kinda weird before. Now I just have a fancy title to go along with it!

I do my business, get ready for school, wake the kids and make a morning smoothie. Right now I'm into Dr. Axe's Bone Broth Keto Chocolate Protein Powder with almond milk, spinach and ice. Weird, but I dig it. Right now I drink it on the way to work while Em drives me (she has her learner's permit and I have found I'm cool with being the one to be shuttled around).

Teaching. I'm so in love with what I do, it's ridiculous. I just have to pace myself. If I have a busy teaching day (physically or emotionally), I'll need to have a quiet evening and vice versa. I feel good when I move, so I do try to move around as much as I can when I teach.

On cooler days, I immediately walk when I get home. In not-so-cool-times, I try to walk in the evening. I also do weights/posture workouts every other day. One day, the pool in my backyard will be finished and you'll find me swimming each day too. I also try to stretch before bed.

I've learned I have to have time to decompress whether it's a walk, reading or praying. When I get home each day, I'm mom and a busy mom. I'm shuttling kids, being involved with them, cooking meals (although my kids are great to pitch in here), helping them with homework, etc. They just know if Mom is tired, she needs to sit for a bit. Self-care is a thing for me.

Every other night, I pull out my auto inject and do a shot. I put a warm towel on the injection site to heat my skin (thighs, hips or tummy). I prep the shot then. Next, I do the injection (slight sting), wait about ten seconds and slowly pull out the needle and stick an ice bag on it. Nate usually clips the needle and I head to bed. More on my Copaxone routine to come.

No cure, but I can't give up. Still me...just me with a weird MS thing:)

Do I think about having MS every day? Yes, every day, no exception. It took me a good year to accept and embrace it all and I have battled some depression along with way.

What does eating look like? No more emotional eating. Everything must be planned, I rarely eat on the fly--I just can't. I plan meals in advance and use FitnessPal when tracking carbs. See "My Treatment Plan" for all the exciting details.

What are flares vs. relapses? Flares are like a brief surge in symptoms. I have one around every 3 months. I don't know why. It starts with painful aches in my hands, then I have full body joint pain and usually end up in bed. For me, a flare feels like intense flu and it's quite painful. I can't eat much and have to be down. One day is usually horrible, then I can ride it out. Flares last about a week or so for me. They are a stark reminder of what my reality could be. They are scary and humbling. I am trying to figure it out, but right now, I just don't know.

A relapse is a new symptom or increased symptom that stays longer than two days. It can be a sign your MS is active. Relapse prevention is what my life centers around. I'm hoping my MRI tomorrow shows that I have not relapsed.

A basic overview. I'm grateful that I don't deal with most of these. Some I have had in the past (muscle spasms, itching, etc) but my nutritional changes seemed to get rid of them.

What are my daily symptoms? 

• Numbness that comes and goes. It courses up and down my legs--especially when I sit. It feels like electricity or little bugs crawling. It's annoying, but not painful. If I do too much without downtime. Sometimes I feel like in my hands and on my face. Not often, but when I do, it freaks me out.
• Balance--I am not too tipsy, I have just found I have to pay more attention when I am walking. I can't really do treadmills, it's the only thing that throws my balance. I'm trying to run a little, but it throws me off too. I can't really whip my head around quickly or I feel that as well.
• Fatigue--I walk a tightrope (go ahead, cue the "Greatest Showman" song). It's a very careful balance of diet, vitamins/supplements, water, exercise, energy to feel good most days. Some days I have to lay down, some days I don't walk up stairs, some days I don't have it in me to go out. Most days I feel alright though, which I'm grateful for. Frankly, the cognitive balance to do it all is exhausting sometimes, but I can balance and that's a gift.
• Bowel/Bladder--I'll spare you the deats here, but it's a balance here as well. Having a BM is a big deal and I can't hold it like I used to:) Plus, I'm officially "in my forties" (ugh) at the end of the week...so, yeah.
• Temperature Regulation--if there was a "Most Annoying Symptom Award" it would be this one. As I explained above, I basically can't regulate myself so any temperature change, to me, feels gigantic. This also means I have to plan my outside time carefully and I'm an outdoors kinda girl, so it cramps my style. I have found that wearing tank tops (gasp) when I am active outside as well as cooling rags help with the heat. Don't judge me. In the cold, I'll have a crazy amount of layers on, don't ask if I'm pregnant. 
• I also hate it when I say I'm hot or cold and people respond "well, it's not"...well, it is to me. As my neurologist said..."it's all in your head." This means that my body can't logically tell if I'm really hot or cold or not--it just responds. It's weird, annoying, but mercifully manageable. 
• Eye Pain-now, I'm lucky because I do not have any optic nerve issues. However, if I squint, it kills my eyes. I also can't use my preferential vision for more than a second as that hurts too. Sadly, I've had to put my photography hobby on hold because of the eye pain. My last couple photos shoots were not great and the pain after was intense. So, for now, it's just my iPhone and I:) Again, no blindness or vision loss, so thumbs-up on this one! 
• Emotional: I do deal with situational depression and anxiety that comes and goes. It's usually not too intense and only the people closet to me can see it. So far, mindfulness, mindset, and my faith help me through this part of it. If I seem off, know that it's never directed at a person--it's something inside of me. 

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New MRI's and A Day in the Life...