One, two, three, floor 😑

[Raingrrl]

Yep...still an active member of the MS Stunt team much to my annoyance! I got up in the middle of the night last night to go to the bathroom. It was pitch black in my room because I stupidly decided the night light was keeping me from falling asleep and hadn’t been using it. Big mistake! The night light is back in place now.

I tripped over something even though I was using the edge of the bed as a guide. I landed flat on the floor as usual. Banged up both knees a little but luckily the right knee was not hurt in the same spot as the fall a couple of months ago. However, this time my face didn’t escape damage. I’ll spare you the details but after being persuaded by my neighbor to go to urgent care this morning, I’m now sporting a huge bandaid over steri tape and glue and placed just above my right eye. I’m incredibly lucky it wasn’t worse. This fall scared me.

And for those of you on Ocevus, they gave me a tetanus vaccine after checking out the info from Genentech about vaccines. The official word is that the vaccine needs to be given at least 6 weeks prior to an infusion. The doctor felt that it was worth given me the vaccine even if it were minimally effective. My last tetanus shot was 8 years ago.

[jimeka]

Oh my goodness, thankGod you are ok. I am trying not to think how bad it could have been. Do you not have a side light? I hope you recover quickly, please let us know how you are doing, rest up, blessings Jimeka 🤗 🍫 💐

[erash]

So sorry about the fall! 🤕

Re. Per the package insert. 💉The vaccines, yes 6 weeks prior to 1st infusion for routine vaccines but (per Genetech pharmacists) inactivated vaccines are ok anytime afterwards, they just won’t be as effective because your immune system can’t mount a normal response. The best timing is controversial.

[Iona60 in reply to erash]

Do you think the flu vaccine should be taken 6 weeks prior to infusion as well?

[erash in reply to Iona60]

If you mean the next infusion, I think it would be dependent on your B cell reproduction. And because I’ve read that in some sources B cells stay depleted beyond the 6mos infusion frequency AND in other sources that B cells begin reproducing faster in some people than in others AND because the package insert says you can begin vaccines 3 months after you STOP Ocrevus AND because the Genetech pharmacist says it hasn’t been studied...I’ve decided and the oncologist concurs, 3 mos after the last infusion. How’s that for making a long story longer 😜

Since Genetech has already made a billion $ this year on Ocrevus, I told them to please study this!

[Raingrrl in reply to erash]

erash , it makes sense to me that B cell reproduction time would vary from person to person. The American College of Clinical Pharmacology states “In a clinical study of 51 patients, the median time for B-cell counts to return to either baseline or lower limit of normal was 72 weeks (range 27-175 weeks) after the last OCREVUS infusion.” With such a broad range of B cell reproduction following an infusion in just 51 people, they don’t have enough data to form a significant conclusion. Now that Ocrevus has been out in the wild for over a year, it seems irresponsible that this isn’t being studied.

It would be awesome if there was some way to use our collective voice to get this issue to be studied.

[erash in reply to Raingrrl]

I’ve already called them about this. It would be good if everyone else could too.

Unfortunately, there’s no $ motivation for them Genetech to do further research but maybe a grant to a university researcher?

If you can think of a way we can organize a joint effort? Maybe via MSAA? NMSS

[Raingrrl in reply to erash]

Yeah...I agree that the money motivation isn’t there for Genentech. I hate that they make a bazillion dollars off of us without true concern for this population. But..that’s the reality.

I’m going to check with my family peeps that might know how to access someone at the research University they graduated from to go for a grant. There are also 2 well known medical research institutions in Seattle that I’ll try reaching out to also. Can’t hurt!

Maybe reaching out to MSAA, NMSS like you suggested as well as orgs like the Rocky Mountain MS Center might help.

I’ll talk to my social worker and see If I can talk to one of the researchers at the MS Center I go to. And my neuro of course. But I don’t see him until November.

[erash in reply to Raingrrl]

Awesome Raingrrl

Frankly, based on how good I’m feeling, Genetech May have earned the billion dollars 🌈🌈🌈

[Memc in reply to erash]

Yes I called them as well- having it on the package insert is not helpful for patient at an infusion center.

[Iona60 in reply to erash]

Wow, that's next week for me. I'll ask the neurologist no this week. Thanks.

[Memc in reply to Iona60]

Get your flu shot this week

[kdali in reply to Iona60]

I’m getting my flu shot two weeks and a day before vacation...which will be around 2.5 months after the infusion. Everyone around me has already been vaccinated though, and I expect to only have 50% protection from the flu at best. My MD never got back to me about when is the best time to get it. I hope they listen to you erash!

[Hidden in reply to kdali]

I got my quadrivalent flu shot this past Tuesday (skipping my 6-mo Ocrevus infusion and thinking I need to reschedule that for November while I build some antibodies to the flu with roughly 20 B cells per microliter, per Figure 2 of a review available at accessdata.fda.gov/drugsatf... ).

[Memc in reply to Hidden]

The flu shot was only fourth percent effective last year.

[JTZES in reply to Iona60]

You can take the flu shot this season not the nasal. On Ocrevus you can not take any vaccine with a live virus.

[MSAAPamela223]

The triply drunken walk of drop foot takes a fall to the whatever is below us. I have learned not to turn quickly and now I have a cane for inside our home and a walker for outdoors. I also need patience. As you find yourself getting wiser on how to get around safely a little help of your choice is wonderful. I am thankful to God and Jesus for granting me strength to tolerate the different effects of my MS. My son, Joseph, was joking about me in a bubble to live with all my mishaps. Most days are symptom challenges while the wonderful days are few and far between with no oops to speak of. I try to grin and bear the worst keeping my mood relaxed. Enjoy, Pamela

[Memc in reply to MSAAPamela223]

Have you been evaluate for an AFO? It really helps me.

[rjoneslaw]

I hope you feel better

[Midgey_Midge06]

Oh man i am so sorry. I know how much that sucks. I am so grateful that ur neighbor talked u into going urgent care. Always make sure to contact ur doc after a fall. - i have had that beaten in my head so many times i cant help but repeat it here 🤗🤗🤗🤗

[Iona60]

Glad that you are Ok.

[RoseySawyer]

Sorry to hear about your fall. Keep that nightlight on at all times. I keep a plug-in nightlight in the bathroom and a dim light on in the kitchen incase one of us in this house wakes up to get a drink or use the bathroom. ❤🌷

[greaterexp]

Ouch! I’m sorry about your fall. Thanks for the reminder to do whatever we can to prevent falls. Stay safe and feel better quickly!

[Juliew19673]

Ouch! Last time I fell I had fainted (chalked that one up to low blood sugar) and while laying on my kitchen floor I thought "This is how people end up in Assisted Living Facilities". Scared me as I'm only 53 - just a youngster! I hope you heal quickly!

[Raingrrl in reply to Juliew19673]

Hi Juliew19673 ! I had that same thought while I was trying to get the cut to stop bleeding...that this is how people end up in Assisted Living. I haven’t told my sister or daughter about the fall because they already are overly concerned about me living alone and my record of falls. I already got rid of a throw rug at my sister’s insistence. It was a good thing to do admittedly.

[goatgal in reply to Juliew19673]

Juliew19673 Since fracturing my ankle in mid-September, I have been in rehab/skilled nursing. Though I would like to be home, spaces are too tight to accommodate a wheelchair with leg extension, so I won't go home until I can bear at least a little weight on the ankle (and use a knee scooter and walker). Believe me, you don't want to be in a place where (no matter how fine the care) you are not in control of when you wake up, when you eat etc. At 78, I am often the only one in the dining room capable of conversation. I am almost always a good 15-20 years younger than other "residents" and though I am gaining strength through fine rehab, some of the days are torturously long. I wouldn't wish this on anyone!

[carolek572 CommunityAmbassador]

Raingrrl,

Please take all precautions to stay as safe as you can. If you have an issue with the night light interfering with your sleep, perhaps use an eye mask?

Stay Strong,

Carole

[Raingrrl in reply to carolek572]

I just fall asleep with the covers over my head. 🙃 Now that the weather is cooler, I can go back to doing that.

[bxrmom]

Glad your okay Raingrrl Glad your neighbor convinced you to go to the walk-in. I have a nightlight by my bed that my sister bought me for Christmas like 10 years ago when I bought my house. It has a little switch on it that I can turn it on/off when I need to. I usually turn it on before I get into bed and turn it off in the morning. We also have nightlights in the bathroom and hallways so everyone can see if they wake up in the middle of the night. The big light that we have in the backyard comes on when it gets dark outside and then also helps light up the house at night.

Jessie

[Raingrrl in reply to bxrmom]

I’ve had nightlights all over my home for years so I can get around at night without turning on the main lights. It was just the one in my bedroom that I had stupidly taken out. It’s back in place.

[erash in reply to Raingrrl]

I saw a tv program, shark tank, with a motion sensor lighted toilet bowl 🚽 the other nite. Of course, that only helps once u get to the toilet. Can u keep a small flashlight at the bedside? 🔦

[Raingrrl in reply to erash]

This is how dumb this fall was...I could have used the flashlight on my ever present cell phone but didn’t think of it! And I also have a flashlight in reach of my bed but didn’t think of that either. The problem is making myself think of those things when they are needed.

[Memc in reply to erash]

I bought the toilet night 6.99 from Amazon and keep a pen light at my bedside. And as I said I keep a awalker at my bedside for nightly toilet runs

Walker has a seat so I put my pen light there on walk to bathroom

[kdali]

Oh nos! I’m glad your neighbor talked you into getting taken care of and you were able to get your tetanus updated. I can’t function without the night lights either 😵 I hope you’re getting some rest 🤗

[Raingrrl]

Thanks for the responses everyone. This fall shook me up more than any other because the cut is so close to my eye. I’m guessing I’ll have a ‘lovely’ scar on my face to serve as a permanent reminder of how dumb I can be. The nightlight is back in place and I’m going to get a small lamp for next to my bed. I don’t know why I didn’t do that before.

I’m hoping I can get away with not telling my sister and daughter. They are both eagle-eyed though. Maybe once it’s healed, I can hide it with a little coverup and my bangs. My sister lives in the area but my daughter is across the country. If they find out, they might make good on their threat to make me wear one of those monitors. Yuck.

[goatgal]

Raingirl Do be careful! The woman in the room next to mine in rehab must wear a helmet to protect her head when she falls. Every time she takes it off (which she does frequently because it looks heavy and is probably hot as well as constricting) the nursing aides make her put it back on (and buckle it more securely). You wouldn't want that! If lights bother you (as they do me), a sleep mask like travelers use for air travel might be helpful. As for a scar, perhaps you can invent a tale involving swashbuckling pirates and a Caribbean adventure?

[Raingrrl in reply to goatgal]

Love the story idea! 😎 And yeah...I wouldn’t want to wear a crash helmet all the time. It’s bad enough that I’ll have to wear the wrist band of shame for my next infusion. They ask if you’ve had a fall in the last six months and if you say yes, they put the band with the red clasp on it to notify everyone that you are a person that falls.

[goatgal in reply to Raingrrl]

Raingrrl I totally understand the embarrassment at being labeled. I saw my papers here at the rehab unit: "fall risk" on a red sticker. Since I am here with a fractured ankle, well, duh!

[villagegirl107]

Oh Raingrrl! I'm so sorry for your fall! But I ,like so many others here,am glad you went to the walk in clinic. And do call your Neuro. I was a letter carrier for ten years. I FELL A LOT! As a carrier you must walk at a brisk pace while sorting the mail for the next customer(very distracting). Now I cannot work but social security is denying me. Unless my fall was worthy of stitches I just sucked it up. I was afraid of being forced out or something. Maybe had I told my Neuro and supervisor every time I fell, my disability payments would have been approved earlier.Look out for you!

[Raingrrl in reply to villagegirl107]

I would have fallen a lot on your job too villagegirl107! Distraction is one of my enemies and I’m easily distracted these days. It’s one of my symptoms that I can’t focus on anything for very long.

This fall was stitches worthy but thankfully they used glue and steri tape instead. At least I think it’s a good thing that they used an alternative to stitches. I’ll know when I see the scar that I’m sure is going to be there after healing.

[villagegirl107 in reply to Raingrrl]

I bet it will make you look tuff! In July my daughter showed me a string of videos with women and girls shaving their heads. They felt so empowered! I thought that even if it wasnt real power,I could stand to feel it for a bit. So... I let her shave my head! I have had long hair with mandatory bangs my whole 47 years. I have not missed it one second since I shaved it! As a matter of fact, i should have done it years ago, it would have helped battle heat sensitivity while I worked.

[Raingrrl in reply to villagegirl107]

Wow! I’m impressed!

[JTZES in reply to villagegirl107]

Have your neurologist perscribe both occupational therapy and vestibular therapy. Both can make a big difference in how you do things and excersize's that can help. Based on their reporting can also support your S.S claim.

Make sure you and employer have filled out Family medical leave paperwork to keep on file for your condition.

I'd also recommend daramime for motion sickness. Or the military uses a product called Sea Bands that can be found on Amazon.

I'm not a doctor but lived with extreme chronic vertigo since 06 and these are some of the things that helped me get through work days. Good luck with things.

[villagegirl107 in reply to JTZES]

I think you're mixing me up with someone else. The fatigue is spot on but thank heavens i do not suffer from vertigo!I will check out the occupational therapy though!

[JTZES in reply to villagegirl107]

Villagegirl,

You are correct my response was ment for the postal carrier that had responded to you. I don't know if there is anyway for you to forword it on to her.

Thank you for the response.

[villagegirl107 in reply to JTZES]

Nope that IS me! I'm the letter carrier that is. Still no vertigo though! I do have exception am muscle weakness in my legs and a bitchin case of fatigue! And a dozen or two "little" symptoms that are easier to deal with if i dont focus on them more than im forced to by the nature of this disease.thanks for the concern though.

[sashaming1]

I use a Walker since my balance is a bit "Off." Could a walker help you? At a local thrift shop one was < $10.00. Also, manually turning on a light on the table next to the bed while still in bed helps me as I get up. I fell awhile ago from out of my shower bench and got a cut on my forehead from hitting the floor which later turned to a scab. I told people who were curious about the scab that I was trying to grow that third eyebrow again.

[Raingrrl in reply to sashaming1]

Hi sashaming1 ... Thanks for the suggestions. While it’s true that my balance can be wonky at times, that isn’t what caused the fall. A walker can’t fix stupidity. I never should have tried to make my way through a pitch dark room. That is the height of stupidity! I also need to be more mindful of leaving stuff on the floor. It was those two things that caused the fall. So I’ve plugged the nightlight back in and cleaned up some stuff off the floor. I’m also going to get a lamp for beside my bed...been meaning to do that even before the fall. And now I have this big ugly bandage on my forehead to remind me every time I look in the mirror.

I love the third eyebrow story!

[Raingrrl]

Update: I took off the steri-tape today and cleaned up the area where the gash was. It’s healing well but I’m guessing I’m going to have another scar. I’m ok with that because it won’t be huge and will be a reminder to THINK things through better. I like visual reminders. 🙃