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 🙏🏻 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 🧡 #mymsstory#fightingwithfaith #kickms

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3 years of MS, Hysterectomy and the New Year!

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!