I know. I’m so not being a good blogger right now. I’ve been trying to find time, energy, verve maybe? It’s been kind of a challenging post infusion week, I cannot lie. Hell. It’s really only been a couple of damn days.
Infusion day brought with it yet another allergic reaction to Ocrevus. They had to stop my drip and give me benedryl twice turning infusion day into an over 8 hour joy ride. I lie. It was not at all joyful. THe benedryl made me feel all hopped up instead of sleepy, like it usually does, so I didn’t sleep more than a wink the entire time I was being infused. I also slept like crap that night when I got home.
There was a mostly new crop of fellow Infusees in the room this time that I am dying to write about but that brings me to my next challenge.
My left hand is suddenly numb. Completely out of the blue, I can’t feel my left hand, especially my left pinkie finger, which has made typing on anything but my phone a real challenge. Writing on my phone works in a pinch but it’s not generally led to my most insightful, prolific work. So I’ve been avoiding it. Hell I’ve been avoiding it because I’ve been mainly unconscious and hoping to feel human again when next I open my eyes but the numb hand isn’t helping matters.
I promise a better, more entertaining write up soon. Until then, I’m doing the usual post-infusion things like trying not to panic, getting lots and lots of rest, eating properly (eff you liquid diet!) and enjoying gray days in my pajamas whilst on various conference calls.
Tomorrow will be better. If tomorrow is not better, the day after should be? I’m trying to cultivate a positive outlook. It’s the only thing keeping me from posting a blog entry that isn’t merely the “eff” word over and over and over again for pages upon pages without end. It’s been suggested to me that I might get more readers if I wasn’t so…colorful with my use of language, so I’m trying to resist that urge too. Not really. That would be dumb.
If nothing else I’m getting really good at resisting urges. Upside detected! Wonder twin powers activate! Shape of…positivity. Form of…mental patient.
Anyway. I’m hanging in there. My numb hand is dying to write more but thumb typing is starting to irritate me so I’m gonna cut this one a bit short.
Thanks for reaching out and checking in on me. It’s good to know that I couldn’t disappear without a trace with nary a soul noticing. You guys really are awesome that way. And every other way.
Until I am no longer numb and/or sleeping 27 hours a day, stay well, friends. I’ll be back. You won’t be rid of me so easily.
Namaste? 😬
Babs Carter
April 25, 2018 4:49 pmIt’s your “colorfulness” (if that’s even a word) that makes me smile…feel better, I guess as better as you can. Been there done that.
bethnigro0212@gmail.com
April 25, 2018 5:19 pmThanks Babs! You guys being out there for me means the world to me. Sincerely. I keep telling myself that things could be worse. They really could. It only helps a little bit? But at least it helps even that much. I need to remember to be more grateful. 😉
Ashley
April 25, 2018 4:50 pmAww Beth, I’m sorry you’re having such a crappy time. Keep your chins up! Things will either get better, or worse, and I’m coming to the conclusion that there’s eff all we can do about it either way. However, lots of good thoughts, positive vibes & love coming your way from Scotland in the sincere hope that they help. Xx
bethnigro0212@gmail.com
April 25, 2018 5:20 pmAll the way from Scotland! I think those are extra special magical vibes and I’m lucky to be on the receiving end. Thanks for your encouragement. I have to believe that things WILL get better. Even if it’s just that I get better at dealing with things not getting better? 😂 that would be progress!
Maureen
April 25, 2018 5:02 pmI’m sorry that you had such a horrible infusion. I’m very lucky to not have any infusion reaction to Ocrevus, so my latest infusion two weeks ago was uneventful. I know that this is not the case for most people. I started on Ocrevus last fall, so this latest infusion was my first full infusion. The two half doses did not have any negative effect on me and I actually felt pretty good afterwards. However, the full dose absolutely LEVELED me, both physically and mentally. I had a bad few days – exhausted, weak, unsteady and was a raving b—- to everyone around me. After a couple of days I started to feel back to my usual self and this week I actually feel better than I did before the infusion. I found when I started Ocrevus that it had a very positive effect on my fatigue and I feel that way again this week.
Everyone reacts differently to medications and I know that your experience could be very different than mine, but I do hope that you will feel better and possibly good after a couple of rough days.
bethnigro0212@gmail.com
April 25, 2018 5:23 pmIt’s so interesting! I also had a good reaction to my first doses though i had the allergic reaction that time too. My second full dose was in November and it was completely uneventful. This was my third – so I’m still just trying to be patient. The fact that you felt leveled is terrible but it actually gives me hope because that’s a perfect way to describe how I’ve felt yesterday and today. Which means maybe tomorrow could be better? There’s always a chance. Thanks for sharing your experience with me. I truly appreciate it. It’s given me some hope.
Lauren Fioresi
April 25, 2018 7:37 pmPlease don’t ever change the way you write. I absolutely love it I can totally effin relate! I started the ocrevus in August and I swear I have felt like s*** since then. I did feel better about a month before my first full dose. I mean like really good I thought this s*** is working! Then I got another infusion and down the hill I started to slide. I joined the Facebook ocrevus groups and I’m getting some good information there. What I’m finding is most everyone feels the same way we do. Not all but a lot. One person was told from ocrevus rep that it would take about 3 full infusions to feel okay which could take up to 2 years. I don’t know about you but I don’t know if I can hang in there. But I will try my best. I mean I only have to work, be a mom , be a wife, and a productive member of society right? Did I mention I have legs that are very difficult to drag around? And I work in the medical field and that I have to help other people with canes and Wheelchairs and Walkers? I’m responsible for their safety. I can’t even stop myself from falling out of own shower! Lol!!!
If you need a good laugh just try to picture that…the irony of it all. Love you, love your writing. keep it up you will make it I promise! Sometimes persistence, determination, self-deprecating humor, and the ability to just roll with whatever comes is the only way to get through. Sending you determination and well wishes,
Lauren
bethnigro0212@gmail.com
April 25, 2018 7:47 pmomg that is awesome. I stopped going to the ocrevus groups after a while because it made me so crazy reading all of the “it’s a miracle!” posts (i felt like a bad person! lol). So this was my third dose so I’m going to think positively and hope that the third time is the charm? I’m meeting with my specialist again in July to discuss how it’s going and to determine if I stick it out or move on to something else (possibly Lemtrada). I am also feeling less than patient trying to keep up with my life as it used to be but at the same time being 100% unwilling to do anything but! I honestly can’t imagine how people do this whole MS thing AND be a wife AND be a mom AND work…I mean, I only take care of me and four cats and I can barely keep my shit together! You’re amazing to me. For real. <3
Lauren Fioresi
April 25, 2018 11:07 pmNo, truly I am amazed by you and what you have accomplished. You have an amazing career, good friends, and have still maintained an incredible work ethic. Just look to what you continue to do in spite of this. If a hurdle comes up you manage to jump over it(ok,poor choice of term but you get my drift) and create a new way that is manageable for you! That is amazing especially so soon into your diagnosis. Give yourself credit for it, recognize and own it. I have contemplated disability it is getting that bad. But because I am only 41 it would be a challenge for me to get approved. So…I decided to enroll in school and learn a new skill. This way when the legs totally give out I can hopefully do a desk job(pay will suck but better than nothing!). Now if the arms give out on me I am f*****…lol. You can do it, be as mean and angry as you want to be but just keep knocking the hurdles out of the way. Plus, no one said keeping your shit together was a requirement. I’m a total mess and I own it.
Roxann Roberts
April 25, 2018 9:40 pmI hope you feel better soon at least a little,
bethnigro0212@gmail.com
April 26, 2018 12:01 amThanks Roxann! I have high hopes for tomorrow. 😉
Positively Alyssa
April 26, 2018 7:58 amI am so sorry the infusions have been hell! I really understand the frustrations this kind of thing can be. It is like we are doing what is necessary to slow the progression of the MS down, but it makes us feel terrible! I hope you start feeling much better very soon. Even though you feel terrible and you are so tired, your attitude and great personality shine through adding so much hope! I have to say, I love the way you explain how you are feeling and saying you would do a post with the eff word a lot! I know the feeling! Get some rest and take care of yourself! All of your followers will never stop supporting and thinking positive thoughts for you! Sending you LOTS of love and comfort!!!
bethnigro0212@gmail.com
April 26, 2018 8:57 amThanks Alyssa. It really means a lot to have so much love and support. Hoping today is a better day. Guess I better get out of bed and find out? 😂🤣😂
Positively Alyssa
April 26, 2018 10:09 amI hope it is a better day for you too, but please do not forget to take it easy! Whatever you do try to not push yourself too far!!
The Little Cripple That Could!
April 26, 2018 9:41 pmDude!! 8 hours!? That is nothing short of shitful!
I hope your hand stops being such an attention seeker ASAP so you can get back to being your hilarious self on here!!
midgesms
April 28, 2018 12:08 amDamn these reactions! We count on these friggin drugs to help alleviate the ridiculous shit were feeling & give us some sort of normalcy back .. did I even say normal?!?! Anyway, lady .. I hope & pray you do wake up & tomorrow is THE day you begin to feel better. You’ve had your fair share of a shit sandwich, it’s time to go & enjoy that beautiful ride you got 🙂
Well wishes in abundance,
M