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
- 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.
- 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.
- 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.
- Hydrate as much as you can for a myriad of reasons.
- 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.
- 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.
- 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.
- 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:)
- Take heart, this too shall pass.
- 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
Your amazing!
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