Current Status, Graduate Degree and Summer Travel!

Current Status: Ok, I've had more blood work and have some answers (see March blog) as to why I've been so run-down and my body is doing weird things.

I discovered that my immuno-suppressing Copaxone shots are really taking a toll. Granted, my MS progression is halted (praise the Lord), but because my immune system is suppressed, it's leaving me open to weird things: like reoccurring mono, parvo virus, etc. Because I am a teacher, I'm constantly being exposed. My doc said that kids/teens carry many of these viruses that lay dormant--but I'm picking up on them. So, while I don't get "regular people" sickness like colds, my weakened immune system is dealing with other things. Also saw that I was anemic...so being totally run-down just contributed to depression, which is a challenge.

I'm looking into supplements and practices to build-up my immune system. I don't want to stop teaching, sigh, but I can't have another spring like the last two. Anyone have suggestions?

Summer is truly my salvation--I'm away from school and students (even though I love it) and my body can just heal. Summer is all about avoiding the heat, but I get a lot of early morning exercise, sleep a ton and just take it easy. I'm beyond sad that summer is swiftly coming to and end...sniffle.

As stated in the previous post, I started bio-identical hormone replacement, which balanced out my mood and I feel like I'm on the other side of depression for now, hallelujah! However, I'm still trying to figure out exactly when to take the hormones, I started by taking them daily, which gave me massive headaches. I'm now just taking them when I think I'd normally have a period (I've had a uterine ablation years ago, BEST decision of my life). Best news? The mystery joint pain does appear to be hormonal and I've been 2 months without pain!!!

*Hormone therapy is no joke. There is a risk. Frankly, because I take Copaxone my risks for about everything sky-rockets, so I am not too worried about risks here. Do your research and see more than one doctor to get opinions. Again, I'm not doing hormone therapy as a pre-menopause thing, but because my immune system is attacking my thyroid and I'm not secreting hormones anywhere in the realm of normal.

Headaches led to an ER visit a couple weeks ago. Because I have MS, it's an automatic brain MRI, which was totally clear. It's crazy how telling ER staff I have MS expedites everything. They were so kind and efficient. I rarely see the ER, but always appreciate the high level of care when I do. MRI results confirmed my thoughts that the headaches were a progesterone overdose:) Sure enough, I stopped the progesterone and the headaches moved on. My neuro prescribed a headache medicine, but I opted not to take it as they faded themselves out.

Through it all, I'm just grateful. I keep reading or hearing about MS patients with far greater challenges and I give thanks I can walk, think, work, exercise, etc. I might be slow, I might have down days, but I'm still here and I'm still me--this is something I will never take for granted. It also reminds me that MS can be as scary as hell--who wants to lose physical, emotional and cognitive ability? Not this girl. So, grateful, just grateful.

May 3, 2019: Yep! That's me...receiving my graduate degree. Sadly, I was still really struggling with depression, so I didn't feel much during all the ceremony and celebration--but I do now! Being in graduate school (with internships) while working, raising a family and managing MS was hard, but I did it:) I'm hoping this will open doors later in my career and I look forward to what the future may hold for me professionally.

My Instagram post on the big day: MS gets to make a lot of decisions: what I eat, what hurts, how long I get to stay outside, my energy level, my mood, how my immune system works (or doesn’t), which events I miss...the list stretches on. Today marked the first big decision I made shortly after diagnosis—to enroll at SUU in a graduate program for Education and Administrative Endorsement. I was called to interview for the program when I was hospitalized, awkwardly explained my situation & asked for a deferment. I decided that while MS could stop a lot of things, it wouldn’t stop this. It’s been a long road, but full of wonderful experiences and support from my tight group of family & friends. I received heavenly help in abundance and I’m so grateful. Today was for my kids to show them it’s possible to do hard things in spite of harder things. Many thanks to so many of you who supported me in so many ways ❤️ Big thanks to Justin @j_robins_26.2 who sees the not-so-chipper-Rachel & always believes in me. Love to Matt, Em and Nate:) 

Now, by the end of May, I was feeling things again and believe me, I had all the feels with my big boy graduating from high school. How did I get a kid this old? Matt is wonderful: kind, smart, funny, but has also had a challenging adolescence these past couple years. It's been a long and winding road, but I love this kid with all my heart and it was awesome to be with him as he reached an important milestone:) 

Summer Travel: Washington DC & the Bahamas

  

In our family, we like to give the gift of experiences. For Matt's graduation, we went on a trip--just myself, my hubs and Matt. He is quite political and a history buff, so we visited DC. It was amazing!! We saw all the cool sites, toured the US Capitol building, went to Gettysburg, etc. My favorite part was seeing my hard-to-impress 18-year-old look impressed by what we saw, and I was delighted to finally see fireflies:) It's the little things people.

Travel is really hard with MS. I like to see other places, but I dread getting there. Frankly, if I didn't marry a travel fanatic, I wouldn't go anywhere.

This is a great article about travelling with MS: https://multiplesclerosisnewstoday.com/2017/11/06/simple-tips-for-traveling-with-ms/

Flights are hard with the whole not-moving around and the fact that I cannot sleep on a plane...ever. Not sleeping and not moving = fatigue that is hard to bounce-back from. I eat a very strict diet, which is a little tricky to manage outside of my home. The biggest problem though is temperature and this year we'd be going to 2 humid places.

As explained in an earlier blog post, I can't regulate my temperature. It's an MS thing and it's bizarre. So...when I'm hot, I can't sweat, I just overheat until I start to neurologically shut down. It's scary and embarrassing. Likewise, when I'm cold--I cannot warm up. I have to externally move my internal temperature and it's hard and ridiculously time consuming.

Last summer we went to LA. I was careful to wear cooling clothes, drink a lot of water, stay in the shade, but one day the temperature and humidity spiked and I started to shut down. I alerted my husband (I could barely speak or walk at that point), we left an amusement park, got me a smoothie and to a hotel room where I could lay down, cool off and sleep. I've been sketchy about humidity since then.

Here is my desert environment, 87 is my magic number! If it's 87 and full sun, I will wilt, so I can't be outside more than a few minutes. I just have to be really careful. Heat sucks it out of my like no one's business. Justin did build me a pool in our backyard which helps a lot.

Mercifully early June in DC was wonderful this year. Temps were low 80's with minimal humidity. I had no problems and I was so grateful.

Warm and impossibly turquoise with white, sandy beaches as far as you can see. 

The Caribbean did NOT disappoint:) 

Before I graduated, Justin asked me where I wanted to go to celebrate. I told him I'd really like to see the water in the Caribbean and boom: trip for 2 to the Bahamas in mid July! 

The Bahamas were unusually warm (high 80's) with a lot of humidity. However, I only had one day I was really tired, but it wasn't a shut-down. And, drum roll please, I actually broke into a sweat! I was so excited:) We were able to traipse around Nassau (with frequent beach breaks) and I handled the humidity just fine. Most days had plenty of overcast skies, which helped a lot. Full sun tends to always be worse for me. I actually felt better there than I do at home with the dry heat. Plus, my normally straight hair curls in the humidity, my face and lips are moist--I think I look dynamite outside the intense desert...totally am retiring to an island location.

So, for my MS friends...

Travel Tips for High Humidity Areas

1. Stay hydrated--drink 2x more than you normally would. You'll need to replace any water you might lose if you sweat, AND you need to stay hydrated to stabilize temperature. I have never worked so hard to drink a ton and it really paid off. 
2. If there is humidity, there should be water nearby. Get in the water as much as you can: pool, ocean, lake, showers, etc. Just make it happen.
3. Don't be stupid--check the temperature, see when humidity and temperature peak and be inside or in the water during that time frame (usually a 2-4 hr block of time).
4. Stick to your schedule with medicine, supplements/vitamins. The more homeostasis you can maintain, the better you'll feel.
5. Utilize fans, cooling rags.vests, misters or hats to cool your body.
6. Eat food with salt. Sounds weird, but on the days I'm a little peaked by humidity, having something salty perks me up. I'm sure it's an electrolyte thing. Also, having a lot of protein in my meals helps me feel better too.
7. Sleep a lot. I got 9 hrs. of sleep or so per night and it went a long way into helping me feel ok.
8. Communicate with your travel companions. Travelling with people outside my immediate family really freaks me out. My family knows I can start to feel weird and we'll switch plans on a dime. I'd feel bad expecting others to do that. However, speak up and change your environment before it gets bad and you don't have a choice.
9. Build your day with cooler inside activities balanced with outside activities. Be aware--make sure you're sitting by AC or if you're in a boat, sit where you can get some water splashes. Plan ahead and make sure your hotel room, relative's place, Air B&B or whatever has A/C!!! You'll need it after being outside for a bit. 
10. Utilize transportation. I love walking around, but too much walking in humidity can really wear you out with MS. Don't be afraid to taxi, public transport, even biking helps. We ended up biking almost everywhere in DC and it saved my energy! 

I know it's all crazy deliberate--part of what stresses me out when travelling--but it's all good, because when you can feel well and travel with MS, it's pretty awesome! Life is short, travel while you can and enjoy the beautiful world God created for us.

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Current Status, Graduate Degree and Summer Travel!

On Depression

I never realize how long I go between posts, there is much to update. Thanks for reading about my continuing saga about life with MS!

First of all, many with MS struggle with depression for many reasons. I wrote in my last post that I had been struggling too. This last bout has been one of the worst.

Depression, for me, usually means excessive emotion, dark thoughts, feelings of failure (which, oddly enough, is the worst when I'm sitting in church), lack of appetite, every hurt is magnified, increased fatigue,feeling hopeless/despair, etc.

I took a turn for the worse in late March. Justin (my hubs) and I were sitting in a theater. It was an emotional part of a movie and everyone was crying or teary, except me. I was numb.

I was numb at church, school, with family. Everything felt very hazy and muddy. I am a woman of faith, but even God seemed silent. I kept praying, kept working, kept living, but it was a mess. I put on a good show, I don't think many noticed anything different.

Finally a foothold appeared when I realized that emotional numbness is not normal for me.

I opened up for the first time to two doctors that manage my care, to my therapist, husband, parents, and a few trusted friends. I got help. I started looking at a root cause and was able to eliminate some things: situational depression (not this time), depression due to my brain lesions (nope, my lesions are not in my emotional center and are not growing), etc.

However, my immune system is attacking my thyroid, and blood work showed my hormones were WAY off. I decided to try bio-identical hormone replacement.

So far, so good. I feel like myself again and I am so grateful. I had no concept of how bad things were until I started to pull out of it. I know what works to maintain my mood and that's part of my daily routine now. If it comes back again, despite hormonal balance, I'll be looking at anti-depressants.

I'm sharing this because I'd like you to keep an eye out. Even the strongest, most stable people can struggle. If someone starts not attending things they normally do, if they seems very quiet, if their personality seems a little different--don't be afraid to talk to them, ask, reach out. Just being told that I was understood and it was going to be ok meant a lot. I didn't get it. I do now and I'll be far more aware and ready to help.

I stumbled across this book when I needed it the most. It's Jane Clayson Johnson's "Silent Souls Weeping" where she write about her own battle with depression, interviews many others who have suffered with depression, and gives a wealth of resources. If you had or are struggling with depression or want to understand what depression is like, don't hesitate to read this book. It is written from a Christian point-of-view, but the information is broad and covers major aspects of depression. 

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On Depression

Current Disease Status & MS Poetry

Let me be honest, if I can write about it, I can handle it.
Writing is therapy for me as I process the reality of living with this disease.
Sometimes it's terrifying and I am sick about the future, 
but I have to pull myself back into the present and stay there.

Disease update: I'm stable and grateful.
I'm fighting depression, but I'm on the upside. 
Depression is one of the most common symptoms of MS--
mine is minimal, but present.
When I act weird, or don't show up...
I'm sorry, it's never you, it's me--it's the MS really.
Some days are worse than others.
I did have a viral infection about a month ago. 
A cold can quickly turn catastrophic. 
After my illness last spring, I've decided I cannot do
antibiotics ever again if at all humanly possible.
The risk of relapse is too high and scary. 
I never know when the damage might be lasting.
My immune system is so, so very messed up.
I've added a kinesiologist to my dream team. 
A Dr. Astle, who also specializes in vitamin therapy.
We knocked it out with massive doses of C and D. 
It was nothing short of miraculous. 
New numbness, that I assumed was MS related, ended up
disappearing with the right chiropractic adjustments.
I am so grateful.
A bit more spasticity--
either bed-shaking muscle spasms (when I'm under too much stress),
and a new one where it feels like my collarbone pops.
It makes me jump and have flashbacks about that 
creepy clown that used to be in a box and pop out unexpectedly. 
Goals: better stretching, more stress management.
I've never had such a busy time in my life and it's wearing on me.
More yoga, more meditation, more breathing...
anyone know how I can get more time?

Many, especially a beloved nephew, are walking through far more
scarier medical issues than I am, 
but disease is disease, and this is mine to figure out.
As I ponder what my little nephew and his family are facing with cancer, 
I thought of that terrible disease as a personified unwelcome house guest. 
this poem kind of came together in a far different way than I anticipated. 

It's the first time I've been able to write with humor, which is a step in the right direction
towards my own emotional grappling with a lifetime of MS.
Speaking of my nephew, follow his story here: GoFundMe4Ethan
I ask for your prayers in his behalf & as always, thanks for reading.

my neMeSis
nemesis: a long-standing rival; an archenemy

Blowing in like a hurricane,
he is all brass, cloaked in entitlement.
Pushing me to the ground, gingerly stepping 
over me, dragging his over-sized suitcase,
smacking me upside my head.
What the? I snarled
My friends call me MS, eyes narrowing as a 
saucy smile spreads across his sunken face.
I'm part of you--you know, 
the part nibbling at your brain and spinal cord?
Yum, he threw in for spite as my 
mouth gaped open in shock. 
Oh, he added, feigning surprise.
No cure--so I'm here for duration doll.
Swaggering to my room, he began unpacking.

This is war.

Glaring at him, I shove the needle full of glatiramer in my 
exposed stomach every other day. Sticking out my tongue, 
I pop handfuls of vitamins each morning.
Laughing, I give up gluten, sugar and dairy, 
trying to starve him out.
You're killing me bird!
he moans as he becomes noticeably smaller.
That's the point moron, I snap back,

Marching around my house 
I chant "remission" at the top of my lungs.
He silently flips me off, pointing to his 
"resting relapse-face" t-shirt. 

One day, my MRI shows my lesions had shrunk
the tiniest smidgen, I smile in quiet joy 
as he moves downstairs, sitting up shop in a dark corner,
plotting my eminent demise.

When the flares come, taunting me I hear,
Hey, enjoy walking, you probably won't in 20.
When I awake at 2am with spasticity shaking my bed, he grins
Wakey, wakey--no more sleep for you sucker!
When fatigue has me bent over, hobbling through a 
crowded parking lot, he whispers,
Wouldn't handicap parking be divine?
I growl a reply, I'd run you down with my wheelchair.
He sulks, 
never really appreciating my humor.

So, wearing my orange ribbon, I blind him with hope,
crushing him with resilience and a side of sass,
waiting for the day when 
medicine embraces dreams, when
elusive cure becomes reality, 
and he will be finally be evicted,
for good. 

One of my reasons to carry on:) 

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Current Disease Status & MS Poetry