I was wiped out after 8 1/2 hours at the hospital getting my 4th Ocrevus infusion yesterday. The first three hours were spent waiting for the pharmacy to compound the drug and get it up to the unit for me to take. At a whopping $100,000 a pop they won’t start getting it ready until the nurses call and say they see the whites of my eyes.
My head ached all afternoon and evening and I struggled to make sense. My favorite was when I told hubby I had “toothed my brush”and was ready for bed…at 8:30. I slept pretty good until about 4:40 this morning. – thanks, steroids I laid in bed daydreaming while snuggling Laudy and finally gave up and got out of bed around 5:40. I’d had three cups of coffee, eaten breakfast, read the news, showered, and was dressed all before I normally get up.
It’s been a long, slow day of flushing from the steroids and a still relentless headache as a side effect of the Ocrevus. It usually takes about 3-4 days to feel normal again. In the meantime, my arms are full of cats and there are plenty of birds at the feeders to entertain us.
We’ve seen the perfect blend of summery sun and rain here in Southwest Missouri this past week. We’re usually roasting in nearly 100*F/38*C by this time in August, but we’ve had gorgeous 77-80*F/21-27*C days. Thanks to the recent weather, nature is lush and bursting with color all over the place around us! The forecast says it will only last another day or two, but it has been a delicious treat while it lasts and a balm for these many months during Covid-19.
A large forested area lies both north and south of our neighborhood with a good sized river about a mile down the road. It has both a well-maintained river access spot and, a little further down the road, an old, reallocated bridge that serves as the entrance for a greenways trail that winds through and circles our city. Additionally, our neighborhood has a little landscaped lake with a walking path, bridge, water feature, bird houses, and a bench along the shore. On Wednesday of this last week MS kindly lent me a decent enough day that I drove to the river in the morning and spent some time soaking in the views from the bridge at the trail’s head. After lunch, I headed off for a lovely, cane-assisted stroll around the lake. There were butterflies everywhere in both places! They somehow managed to lift my spirits on their tiny little wings and carry them about as they soared around and flitted and fluttered here and there. Similarly, as I rested a couple of times on my way around the lake in the afternoon, I found myself smiling as I tried to follow the dizzying courses of dozens of dragonflies going nowhere and everywhere at once. What funny little creatures! Oh, and don’t worry, there are plenty of bird and cat photos below too😻!
This past Friday was an exciting day when…my new camera arrived!!! As you peruse the photos below, see if you can guess which ones I took with my point-and-shoot and which ones were with my new DSLR. The new camera inspired me to branch out and find a new photo editing app to play around with. It’s pretty safe to say I have a lot to learn. As an example, I hadn’t been messing around with the camera for more than five minutes before I realized I needed to invest in a more versatile lens. Some lessons are pricey 😉! No worries though, I am having fun and can’t wait to learn and grow my skills (and lens collection!). It was time for the upgrade because I needed another sit-down hobby to add to my arsenal of things to do when the MS monster has me lashed to the couch.
Speaking of MS, my next Ocrevus infusion is at the end of this month. Let’s see, this will be my second full dose which means I’ve been on it for 18 months. For the first time since starting it I think I’m experiencing the “crap gap” I’ve heard other MSers describe just before their next dose. My already ridiculous fatigue intermixed with poor balance, endurance, gait, bladder issues, clumsiness, sluggish word finding, and occasional cog-fog have all ratcheted up to the next level over the last few days. I hope topping the tank with more O-juice knocks my symptoms back down to the previous notch.
Part I: Riparian and Lakeside Entertainment
Here we are at the end of another blog. I looked back and realized I have been posting weekly lately. I didn’t mean to, or not mean to, it just happened. Will there be another blog next week? Maybe, I guess we will both have to wait and see😁. Either way, I’m glad you stopped by for a look-see. May God be with you! Amy
It’s been three weeks since I finished my Ocrevus infusions and, thankfully, I have returned to my normal MS baseline. I’ve had quite a few people ask me if I have noticed my MS “getting better yet”. Sadly, the answer is no. There aren’t any cures for MS and there is nothing to take away the damage that has already been done. The purpose of Ocrevus, and all the other disease modifying drugs, is to try to stop any further damage from occurring. There are many researchers working hard to try to figure out how to not only stop MS from progressing, but also how to repair damage to the nervous system in order to reverse the debilitating symptoms of the disease. This is a pretty good segue into the information overload mentioned in the title.
Perhaps you are like me and have had to take breaks from social media and the constant barrage of local and international news for the sake of maintaining your own sanity. Well, about a year ago I signed up to a couple of daily MS research news outlets. They arrive in my inbox each morning and present several summaries and links from around the world to everything ranging from research proposals to current studies in mice (poor little mice, they’ve born the brunt of forward thinking MS flops and successes), comparisons of a current MS drug against a possible new drug, clinical trials in all manner of stages, forums about MS, and even articles by fellow MSers about how they live and cope with the disease.
I typically do like to be on top of all the latest MS information, but here lately I’ve been feeling like it’s all too ivory tower. Down here in the trenches, at least in my trench, it’s muddy and wormy with the walls always caving in and needing constant repair. I’m covered in the dank, earthy stench that never leaves my nostrils, even when I dare to raise my head in an effort to try to go over the top, despite having trench-foot. To top it all off, a hail of bullets marked MS come flying over my head intermittently keeping me in a state of constant vigilance and exhaustion.
So, at least for now, I’m going to lie low down here in my mucky but familiar trench and try not to worry about what the people in the ivory towers conjure up for the next move. I’m not giving up on it and I’m glad someone is in the ivory tower, I just need a break from it all for a while.
To that end, about a month ago, I dusted off my sewing machine, turned the music up, and started stitching away! My Mom was a wonderful seamstress and even owned a fabric store when I was young. She showed me how to sew but it didn’t come as easily to me as it did for her. I took a sewing class in high school and had a few lessons through 4-H, too. I’ve sewn a few things through the years as an adult but never really thought of it as something I could get into as a regular hobby. That is until now. I am thoroughly enjoying myself and looking forward to each new day to get stuck in to some new project! The first one was this little sewing catch-all.
I used the leftover material from the catch-all to make some cute bowl huggers for the microwave.
While it is true that some days I am too tired to sew at all and other days I have to take breaks after just a little bit of sewing exertion, just being in my little sewing space brings me joy. For example, looking at all this thread…
…and ALL this fabric with cats ❤️ brings me inspiration for new projects to try when I eventually do have energy!!
I finished up a couple of these boxes yesterday so I would have a better way to see and store my fabric.
I’ve made several things for others, too, which has given me joy and purpose. Fair warning: If you get a Christmas gift from me this year it’s probably going to be homemade. But don’t worry, not all the fabrics I’ve been stashing away have cats on them 😉.
Signing out from the trenches and hoping you’re upwind from me!
It’s time for my next heapin’ helpin’ of Ocrevus! I’m writing this at the hospital while the Ocrevus Juice (“OJ”) is going in.
My life has been a pretty low key affair since I posted last. As far as the OJ is concerned, I felt decent and it seemed I even had a bit more energy than usual for the first couple of days, despite a light, chronic headache. Naturally, the penny eventually dropped and on the third day a monstrously oppressive fatigue settled in. It felt like I was trying to balance a bowling ball on my neck instead of my head. My legs were concrete pillars and my feet were made of iron. This tyranny lasted for five days before finally releasing me to a much kinder, though still pretty strict, general tiredness. I wonder how it will play out this time. I’m hoping it demands rocky road ice cream 😉.
Todd and I did have one HUGE outing this past Saturday. He rode in the MS Bike 150 in my honor 🥰. I was so proud of him. It was brutally hot that day but he pushed on and completed 102 miles! As I’ve mentioned before in previous blogs, I don’t drive much anymore because it makes me tired. So, it was a ginormous effort for me to drive 80 miles to the finish line to pick him up. Both of us gave it all we had in the name of fighting this crazy disease. I ended up paying for the effort for a couple of days. On the upside, I spent two days in my jammies snuggling with our cats whilst alternatively watching TV and reading.
I have no idea when I will feel lucid enough to write another post. But I do sincerely thank you for joining me as I meander through the wilderness that is MS.
I kept a running log yesterday of how my first experience with Ocrevus went. It was a long day for me, but it went pretty smoothly. Even so, I’m glad it’s over because the anticipation of the unknown was getting pretty heavy to carry. In hind site, I don’t think it was the best decision for me to join a Facebook Ocrevus group. There were some pretty extreme experiences shared and a fair amount of misinformation conveyed about both MS and Ocrevus. Each person’s body reacts differently to the ever growing range of MS Disease Modifying Therapies (DMTs), though. This was mine.
7:15 Checked in at Hospital Admissions 7:30 Rode up to the Infusion Center via the scenic route with a blue haired volunteer who got lost in the hospital 😂 7:50 All checked in and IV lead placed then taken to a chair. Waiting for pharmacy to bring my drugs up. 8:33 Drugs arrive. Benadryl, Solu-Medrol, and Saline into the IV first… I’m getting sleepy. Solumedrol is flowing, it feels a little cold as it hits the vein. They gave me a couple of Tylenol, too. 8:40 The nurse starts the Ocrevus Juice (O.J.😉) and says, “You’re off like a herd of turtles, Sister.” 8:51 I have a funky sweet metallic taste in my mouth😝. 9:50 They’ve now bumped up the infusion rate twice and all is well other than a mild headache. 10:15 The rate of infusion was bumped up again and all is well. 10:35 Well, I just had a mild reaction consisting of a worsening headache and dizziness. They are pausing the medicine for 30 minutes and then they are going to slow the rate of infusion down when they resume it. So… it’s going to take a bit more time than the originally planned 4.5 hours. 11:00 I feel better now that they’ve stopped the med and are just running saline. 11:24 Infusion resumed and I’m eating the lunch I packed for myself. 11:55 Bumped up the rate again and I still feel fine. 12:24 Last bump up to the same rate that gave me the headache and dizziness. Fingers crossed it’s okay now. There’s not much left in the bag. 12:40. I have the slightest of headaches but the bag is so close to empty that I’m going to ride it out. 12:52 Ocrevus half dose #1 is in the books! I have to stay for an hour to be monitored but then I’m free🕊️!! 1:50 The last drop of the saline has dripped, IV is out, and I’m heading out for a dear friend from church to drive me home 2:20ish I’m home, ready to shower, and put my jammies on. I have still have a headache so time for some Advil. The icky metallic/sweet taste won’t budge. The metallic part is the very familiar taste of the Solu-Medrol. I guess the sweet part is the Ocrevus because it started within seconds of it beginning. 3:40 I walked around the house for about 25 minutes doing little chores here and there before I felt the usual, sudden onset of fatigue settle in and bind me to the recliner. I’m going to be here a while, but I don’t think it’s related to the Ocrevus, just my typical MS. The headache remains entrenched, though, and it’s definitely from the infusion. I’m not sure which drug has caused it, Solu-Medrol or Ocrevus or even the two together. I do regularly get headaches from Solu-Medrol, but not typically until closer to the 24-hour mark and Advil or Tylenol shuts it down pretty quickly. 6:00 Ate dinner and resting. The headache is still slowly throbbing away. It’s not terrible, just there. 8:15 Added a couple of Tylenol to my handful of night meds and got ready for bed. 8:30 Tucked up in bed, getting ready to pray, and hoping the headache gets tired of hanging around and runs away with the dish and the spoon or hitches a ride with the cow jumping over the moon.
Friday, August 30th 7:20 The headache is gone!! I’m flushing red from the steroids and feeling tired but other than that I’m great😁.
I just have to survive the next couple of days while the steroids ooze out. I go for the second half dose two weeks from yesterday, September 12th. And then…I don’t have to go back for six months in order to get my first full dose!
Thanks for hanging around to read this and for the many who have reached out to me to let me know they’ve been praying for me. I know the prayers have made all the difference!