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.
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.
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| 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
- 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.
- 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.
- 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).
- Stick to your schedule with medicine, supplements/vitamins. The more homeostasis you can maintain, the better you'll feel.
- Utilize fans, cooling rags.vests, misters or hats to cool your body.
- 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.
- Sleep a lot. I got 9 hrs. of sleep or so per night and it went a long way into helping me feel ok.
- 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.
- 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.
- 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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