Friday, January 3, 2020

3 years of MS, Hysterectomy and the New Year!

3 years into a lifetime journey with a chronic illness. 3 years and I'm still fighting, I'm in remission and I have full mobility. This is always a time of year for me of reflection, re-evaluation and immense gratitude. 


If you are new to the blog, I have RRMS (relapse-remitting multiple sclerosis) spinal (many lesions) and brain (fewer lesions.) MRI's showed my disease is remitting right now: yay! My latest Insta post gives a good summary of my current status (see below).

I was thrown for a loop this October when my uterus prolapsed. This is my second pelvic prolapse in 2 years, so I'm headed to pelvic rehab later this month...good times. After meeting with my gyeno, we decided that surgery was needed as soon as possible. So, the next week I was in the hospital, prepping for surgery.

Surgery with MS and a compromised immune system is tricky. The surgery went well. Dr. Brown with Valley OB in St. George is a saint. Such a kind and caring doctor, who understands how MS factors into everything. I did struggle with breathing after surgery and staying awake:) My chatty, disoriented state kept Justin laughing. Unfortunately a couple days after surgery I became very ill. I cannot take antibiotics unless it's critical because I've learned that antibiotics flare my MS, which can be catastrophic. So, it look me 4 weeks to feel normal again and it was rough. 

Usually I can fight sickness with high vitamin doses. This time, because I was also healing from an invasive surgery, things did not heal as quickly as I'd hoped despite two infusion and more vitamins that I can count. I was out of school (I am a middle school English teacher) for about 3 weeks and it was rough. I had planned on a leisurely recovery, lol, but that was not the case. Bone-rattling coughing and sinus issues took a while to clear out. There is nothing like a bout of sickness that seems to stretch forever that makes you really grateful for the good times. Life went on, I had a good sub and the students did fairly well in my absence. I was surrounded by good friends and family who were available to help. I was able to stay balanced emotionally too. I've written about depression and I've been in a good place since May, I was worried this might throw me, but all was well and with time, I did recover. 

Smiling in the hospital, just a token overnight stay this time, thank goodness.

MS Surgical Tips

  1. Communicate clearly with all medical personnel that you have MS. Most of them having a working knowledge of what to look for, some don't, so keep them posted and listen to your body.
  2. Bowel prep if you can or load up on fiber pre-surgery. Use stool softener or Mirlax (or something) post-surgery. Anesthesia already slows bowels down (if you haven't had the pleasure of surgery--take my word for it), but it's 10 times worse with MS when your bowel area has interrupted signals to the brain. Beware of narcotics. They will bind you up. I wasn't in a lot of pain after this surgery, so I was just able to do Aleve. More difficult surgeries, like sinus surgeries were extraordinarily painful for me and I did Lortab...and paid the price for days after.
  3. Get your catheter out as soon as possible and ease back into it. To me, catheters are akin to water-board torture. My bladder works even slower than my bowels, so I knew I needed it out ASAP because the longer it would stay in, the harder it would be to regain function. Again, faulty communication between bladder and brain can make life very uncomfortable. I do know that the longer you're on a catheter, the nerves relax and it takes a lot to get them working. Your nurse should have tips to help you.
  4. Hydrate as much as you can for a myriad of reasons. 
  5. Use the magic circulation socks/pump things. One of the worst things for MS (for me) is not moving. Daily exercise and moving around during the day is critical. The circulation sock things keep your blood moving and can help stave off muscle spasms and cramps. *If you start to have numbness, try to move as soon as you can.
  6. Walk when you are ready and be careful. Any surgery is going to limit your movement for a while. I am all over-achiever, so I tried to walk as soon as I was awake but was so severely nauseated that I just ended up holding up the wall until I was kindly escorted back to bed. I asked for nausea medicine and was able to move around after. Watch for blood clots too with MS as things don't move as they should.
  7. Flood your body with nutrition...and I don't mean hospital food. Getting as many veggies, fruits and lean proteins as possible to expedite healing. 
  8. Do research ahead of time for your specific surgery. I found A LOT about hysterectomy recovery, which made my life easier. BTW, "goodbye uterus" memes abound and they are pretty funny:)
  9. Take heart, this too shall pass. 
  10. Final thought--have a network of help arranged ahead of time. Plan on extra recovery time with MS.

December was my bi-annual visit with my neuro. It was the shortest, least exciting visit I've ever had, which is NOT a bad thing. I'm to stay the course, watch my balance and I won't have to have another MRI until next Dec (rather than twice a year) because my last few scans have been clear. Grateful for all of that and appreciative of Kelsie Montgomery, PA and Dr. DeSabrio who keep an eye on me and are wonderful to work with.

Visit to Maui over Christmas Break. I ran my "Rachel Travels" protocol and did well. It was warm, so warm and felt wonderful to my body. Great time with my husband and children:)



On New Year...this is the first time in years I've been excited for January and mentally ready to make some big changes. There's a lot I'm excited about with how I connect to my Father in Heaven and Savior and I have some MS goals as well.

I'm working with Kim from MS Diet for Life to give my diet a reboot and reevaluate my treatment plan. She was pivotal when I was diagnosed and has never steered me wrong.

I'm also pursuing pelvic rehab to safely starts weights again and will continue daily walking/hiking and swimming (when possible).

I've learned a lot about meditation and will be incorporating this in more meaningful ways. I've learned that stress can bring on flares and I've got to be more mindful and careful. I flared right before we went to Maui and it was horrible and 100% stress related.

Since I was young I've struggle with body image issues. I'm working with Jason Seib of Body Beliefs to work on changing my thought process. This has been a source of pain for so long to me...and even worse with a suddenly diseased body, that I'm really looking forward to doing the long-term work of healing--it's time.

I finally feel stable enough and am in a good place emotionally to make some big changes and I am excited for what the future will bring.

God is my #1 source for help with MS (and everything in life really). I know that we are His children and we are greatly loved. Don't be afraid to approach Him with your struggles and learn to understanding how He uniquely speaks to you.

Thank you for reading and Happy New Year to each of you!


Latest Insta Post...follow me at @raeofsunshine526
3 years of MS;) Here’s where I am in my journey. I have relapse-remitting type with spine (many) and brain (not as many) lesions. I’m currently in remission; there is no cure. I take Copaxone, a disease-modifier shot, every other day. It kills my t-cells to protect my brain & spine from immune system attacks. It also alters my immune system function, which is problematic—leading to stuff like Hashimoto’s. I eat a strict anti-inflammatory diet: no gluten, sugar, dairy, processed foods. I exercise daily & do alternative treatments to maintain normal, like lots of supplements/vitamins, chiropractic care, massage, vitamin infusions, etc. I pray a lot and trust my Father & Savior to guide my treatment. I’ve had a lot of divine intervention—it’s miraculous to me. I can testify of God’s intricate involvement in our lives. I am thankful to have full mobility, I teach full time. I have to be careful. I fatigue easily—I’m running about 80% attendance at kid/family/friend functions. I feel bad when I miss things & embarrassed when I have to leave early. I feel like some people think I’m faking—I never am. I look far healthier than how I feel. I trip and stumble. I have to really focus on balance. Stuff like numbness, MS “hug”, bowel/bladder issues come and go. I fear relapse & permanent loss—especially of cognitive function—and being a burden on my family. But I’m choosing to trust my Father every day—I’m going to be ok.
I struggle with depression, but have been in a good place for a while. I have a dream team of doctors & specialists who support me & listen to me. MS keeps me grounded, gives me a daily vehicle to exercise my faith, and has given me increased empathy & compassion...and I take waaaay better care of my body than I ever have. I have remarkable friends & family who see the real me and are unfailingly understanding and loving. Thank you ๐Ÿ™๐Ÿป My hubs and kids see the most. Making changes on the fly due to mom’s MS is part of life and they are always good about it. They are also teaming with MS jokes;) Everyone has something(s) to deal with. This is one of mine. Still, it’s a life that’s blessed...even with MS ๐Ÿงก #mymsstory#fightingwithfaith #kickms

Sunday, July 28, 2019

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.


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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.

Image result for ms and travelling abroad
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.











Saturday, July 27, 2019

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.

Image result for cartoon and depression
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.

This isn't mine but it is incredibly accurate..... - Imgur

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. 

SilentSoulsBook5.png


Friday, March 1, 2019

...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!






Friday, October 5, 2018

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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Friday, July 13, 2018

The Heat is ON!

Opening monologue
The heat is on: cue the music, you know you want to sing along.
So, heat intolerance is common in MS patients and effects us all differently. The scientific explanation is heavy, so don't even ask...
Ok, since you asked, because of the lesions (in my brain and on my spine),
heat causes my CNS to slow down or speed up and misfire.
The lesion areas interrupt neurological signals, so it's a hot mess.
Because of this, I don't really sweat--which is weird.
Weird like I don't even wear deodorant anymore because
nothing happens in the deep recesses of my arms.

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Word. 

Sometimes a girl just wants to sweat...but she can't
Our bodies cool down by sweating--moisture comes off of us and evaporates around us to regulate our temperature. MS, on the other hand, causes extreme sensitivity where even a 1/4 of a degree rise in my core temperature can flare symptoms.
My nervous system can't send those signals quickly enough and I start to overheat.
For me, due to some, uh, "field research", I start to overheat around 87-ish degrees in my beloved desert home. Visiting humid places is exponentially worse.
Heat causes the lesions to get aggravated, causing a pseudo-exacerbation.
This means that all the symptoms from prior flares/relapses come again! It's like a fun trip down memory lane with your lesions. Kidding, it's not fun...at all.

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In my case, I usually start to lose feeling in my right arm and calves down.
I feel extraordinarily heavy and weak (there really aren't words to describe what this feels like).
The fatigue is almost debilitating.
 I may get facial numbness and said face is usually 50 shades of red.
It's draining and scary, all at the same time.
Oh, and the cog-fog.
I'm a brainy kind of gal, it's the core of my identity.
What I lack in beauty, I totally compensate for in brain power & stunning personality.
Yeah, heat makes me stupid.
My brain slows down, as does my mouth.
This might be troubling, or relieving, for those who know me well.
I have a hard time forming a coherent thought. It's embarrassing.
The good news is I can recover fairly quickly.
I have to either submerge myself in water or go inside and start drinking cool water/shower to drop my temperature.
It makes me so very tired that a nap is essential, which is cool I like naps!
It will slow me down, stop me in my tracks and ruin my day...so I have to be careful.
I manage really well at home in my highly-controlled environment, travel, on the other hand, is hard.

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Home base
At home?
I have to exercise daily--it's a must with MS.
I wake up early, between 6-7am and I'm inside around 8-8:30am. In my desert life, that timing is about right. If I stay out longer, the heat will start to affect me.
It's a ridiculous balance. I must have vitamin D to manage this beast, vitamin D is best absorbed through direct sunlight, but direct sunlight kills me softly.
I'm also super-white and don't tan...not fair.
There is NOTHING about my body that even hints I'm meant for heat, yet I need it.
It's like a bad romance.
A really, really bad romance.
And I live in the desert of Southern Utah where it's no big deal and everyone still functions when it's 112 outside. It's like a slightly cooler Phoenix.
But it's dry heat, so it's all good...ha ha.
I drink...a lot, between 120-150 oz a day in the summer to keep me cool and hydrated. I also love watermelon, tepid baths and a/c.
All errands are done quickly, the earlier the better. I can manage walking to my car and back, that's about it with the heat here.
My hubs is building me a pool to help me through the summers. Super excited about that. I feel like I should have been a mermaid because I LOVE to be in water. A mermaid with MS? Sounds like a horror show...

The ocean is my favorite place to be:)

Wanderlust 
Vacations?
So hard and I hate it.
Our family likes to travel  and I feel terrible that vacations turn into a
"watch Mom monitor her MS" sideshow.
If I have to be out in the heat, I'm sporting cooling rags (these don't help much in humid temps) and drinking a lot. The cooling rags look goofy--like I'm wearing a
brightly colored cape, like I'm Captain MS.
Yes, there are MS cooling vests.
No, I haven't been able to go there yet.
They look like bullet proof vests, are bulky, look labor-intensive...just no.
I will at some point and you can all say "I told you so".
Outdoor outings have got to be short.
Somewhere to crash for naps is critical.

On not going to the Midwest
We were supposed to go to St. Louis this summer. My kids haven't seen the great midwest and we're Mormon, so we were going to do Nauvoo too--think of it as a Mormon Mecca. It's rich in our church's history and beautiful.
However, I started following the weater and the high humidity started stressing me out.
I wanted to go badly, but I knew it would be a bad choice.
I talked to the hubs, who is so very understanding.
"No big deal, want to do San Diego instead?"
Yes, please.
San Diego is my home away from home.
Ocean, sea lions, Cheesecake Factory? What's not to love?
So, he cancelled hotels, switched airlines and took care of everything so I could go to the beach and Legoland (on-site water park!) and Universal Studios (pray for me) to see the Wonderful Wizarding Wworld of Harry Potter that I've been dying to visit.
All I want is my own wand...with a real unicorn hair in the core.
It's the little things people.
They have frozen butter beer, so there's hope for me.
Best part? We're doing Nauvoo in October.

#blessed
I'm lucky that my husband is so accommodating and keeps an eye on me.
I know he's got my back...and my MS and he never, ever complains.
I'm forever grateful.
My kids are chill, they laugh about it all and blame the brain lesions for everything I do.
They do keep harassing me to get a handicap sticker for better parking. Selfish buggers.
I actually make more jokes than anything, it's a coping mechanism
I use to hide my real feelings...says my therapist.

MS sucks in the summer and sucks in the cold winter.
I'm one of the special MSers with both heat and cold issues--upcoming post on that one.
Frankly I'd take the heat any day.
I actually dream of fire a lot. Probably need to cover that in therapy too.
That reminds me of my favorite Robert Frost poem!
{English teacher moment},
and since you're reading my blog, you can go there with me.

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Dang I love poetry.
Anyway, the heat is on and I'm basically hiding in my home 
...or a pool.
Grateful for the ability to manage it, for amazing family and friends.
Really grateful to my God who continually teaches me how to manage this. 
Peace out. 

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HOLY COW!! This is insane.

For my MS friends...
Rachel's Quick & Dirty Tips for Dealing with Heat

  • Know your limits--have an idea of what you can tolerate, check temps, dew point (this is a thing by the way--I'm currently researching), etc.
  • Have a way to cool yourself down: fans, cooling rags, water, cooling vest or cooling clothes, mister, ice cubes, whatever works.
  • If you do have to be out in the heat, have a back-up plan: find shade, escape to a/c in a car, store, restaurant, etc.
  • Plan accordingly-even though I don't like to admit it, my day is planned around not being in the heat. It does make life manageable. 
  • Communicate-don't be afraid to speak up if it's too much, don't apologize or worry about what people will think. You have MS and you have to do whatever you need to do to be well. Help educate your friends and family as to what you need. 
  • If you react--cool yourself down as soon as possible. The symptoms you are having should subside. If they don't after 24 hrs. call your neurologist. My worst pseudo was the spring after diagnosis. I got into a hotel hot tub and ended up having my entire left arm numb for about a week. Lesson learned: no more hot-tubbing for this girl.  
  • Nap when you need to and practice good self care.
  • Remember humidity tends to be worse than just heat because if you can sweat, the moisture around you won't let that sweat evaporate and you'll overheat rather quickly. 
  • We do need sunlight--make sure you have a good 10-15 mins. of sunlight without sunscreen so you can absorb. Frankly, I go out when the sun first rises without sunscreen and rarely burn. I'm usually soaking up a good hour or two of sun.
  • Cheer up, Fall will be here before you know it! Fall is my happy place: can't wait!

Out on a sunny day with hubs...in the shade...for about 5 minutes:)


Saturday, June 30, 2018

Balancing Energy: Emotional

With MS, balancing your energy is a thing.

Balancing energy involves the emotional, cognitive and physical. I'm sharing what I've learned to help not only my MS peeps, but anyone who is searching for balance in their lives.

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I kind of have a couple factors working against me. Number one, I'm a Giver (or Protagonist) personality (according to the Carl Jung/Meyers-Briggs 16 personality test). If you haven't taken this, you totally should--it's quite accurate. Basically, I love people and love to make them happy, even at my own expense.

Therapy has helped me check my people-pleasing ways and learn how to say no. This has become crucial in the whole balanced life idea, but is something I have not mastered...yet! Another is that I've learned that if I have a busy day, I've got to have a quiet evening or vice versa. I can't go on full speed all day like I used to.

My kids know there is "tired" and "MS-tired". Tired is feeling a little wiped out after a busy day, like a normal-person feeling. MS-tired is bone-melting, heavy fatigue...like I might collapse on someone. This leads to time on the couch or in bed, which is irritating. Part of managing this disease is paying close attention to how I feel and knowing when to push and when to pull back.

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What Does Emotional Balance Look Like For Me?  I know that I am a people person, but alone time is critical so I can regroup. I am a teacher and an involved mother. I'm around people all the time. I do enjoy it, but crave alone time each day. I have a life where I have to be "on" frequently, but it's draining. Whether it's a long walk in the early morning or even commute time in my car; I've got to have it or I can't center.

I've also learned that some people drain me, don't effect me (neutral) or boost my energy. I don't know what it is, but some personalities and people suck out my energy. It's usually people who are more negative, needy, demanding or dramatic. I will find ways to limit my time with the people and rarely confront them...confrontation takes a lot out of me too.

Most people in my life are neutral, balancing really. These are most family, friends and students. My energy is neither drained or added to being around them. A few special family members and close friends add to my energy, which I'm forever grateful for. I've found that I get an energy boost from teaching (unless it's really direct-instruction-intensive) and from deep or fun conversations. Although I'm uncomfortable with it sometimes, but when others help me in any way, it adds. My emotional self craves those types of interactions.

Meditation has helped me emotionally. I've gone through some hard things which led to anxiety, depression and inner tumult that was relentless. My therapist recommended Headspace, which is a meditation app I love!

Reading recommended books to help me feel more connected to myself also helped...a lot.
My top picks:
  • "Daring Greatly" by Brene Brown (any of her books are on point)
  • "The Assertiveness Guide for Women" by Dr. Julie Hanks (dynamite)
  •  "Self-Compassion" by Kristin Neff (transformative), 
  • "Adult Children of Emotionally Immature Parents" by Lindsay Gibson (my parents are cool, but the book helped me A LOT with the emotionally immature adults in my life).
Prayer: I've already discussed that I'm of the LDS faith and a believer in Christ. My relationship with God and my Savior is the most important thing to me. I'm lost without the peace and direction they bring to me. Making time to pray each day (whether I'm at home, driving or hiking) makes ALL the difference to me in my day and helps me cope and balance. This is one of my favorite pictures of the Savior, because it's how I feel pretty often. Drowning in something and desperately grasping for help.


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Exercise: I've got to move every day--no matter what. Yes, it helps physically (which I'll explain in another post), but it clears my head and lifts my spirit. Moving for me looks like walks in the early morning, hikes, biking or swimming.

I got tired (not MS-tired, just tired-of-writing) and threw these on a wordle to show what balance looks like for me. It's good for the MS, but mostly it's good for my soul. I figured I've got to master this since I'll have a lifetime of dealing with the disease...no time to start like the present! Happy balancing to one and all!