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LL, a walk outside (but not in your hood) sounds like a fine idea. Not sure about the car ride unless you feel certain the car motion won't increase your dizziness (if it's even possible to make it worse but who wants to find that out the hard way?) So glad you're getting yourself to do laps.
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I am down to 5 mgs of prednisone tomorrow for 1 week and then off completely. The headaches (On and off) have been gruesome so I'll be glad to be OFF of this chit and pray to never be on it again. I contend it did NOTHING to help me with this reaction, just like everything else.

My son came by yesterday for a visit and was suggesting ideas to get me out of the house. Getting a wheelchair to push me around the neighborhood was one. Feels rather awkward, if you ask me.....to greet all my nosy neighbors who will suddenly want to rush out to say hello. Having to tell My Story over and over again sounds depressing. But I said Maybe. I should disclose that I live in a patio home development of 66 homes inhabited by mainly old nosy crotchety people who are in perpetually bad moods. I was 45 when I bought my house brand new and DD was 12. When she rode her bike around the neighborhood, the jackasses would yell at her to GET OUT OF HERE KID. The other idea DS had was to rent a convertible and take me for a drive with the top down. I thought that was sweet. I'm not great in the car, but I might not mind such a thing! 😁 His goal is to keep me from losing my mind while this issue runs it's course, even if it takes a year. He and Chuck are convinced it WILL go away.

The Valley Fever lung fungus test came back negative. Cannot blame the dizziness on anything but a toxic reaction to the immunotherapy now.

Chuck leaves at 5 pm to see John Fogarty at Red Rocks tonight w his bff who's got lymphoma cancer from Roundup. He's survived 5 grueling years so far and even at deaths door a few times already. The last tx he had of a bone marrow transplant from his sister saved his life but left him w graft vs. host disease which is horrible. He's got lymphoma in his legs SO badly that he can barely walk. But his handicapped sticker will come in handy for them bc parking at Red Rocks is a 1 mile uphill walk and dreadful otherwise 🤣.

I am walking laps in my hallway every hour (50 feet per lap) 4x each hour. I'm pretty out of shape after all these months of chair and bed life, but this is a good start. I feel half dead after I finish, but I can feel my blood pumping too. It's gotta start somewhere.

Beatty, I bought a bamboo/wooden brush that the head doesn't detach....its one piece fortunately.

BB, yes, too much togetherness gives me visions of strangulation.....🤣😃
UCH gave me a 10mg taper schedule which I cut down to 5. So it'll be 5 and then off.

Geaton......for me, the mosquito situation in FL was the worst since I'm so allergic. So between the heat, mosquitoes and the rest of the allergies, my asthma was out of control 24/7 and we had to move to CO.
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LL, I seem to recall that you were at the 10mg mark this week; does the taper go by 2.5 mgs from here on in as opposed to 5 or 10 mgs?

Thinking of you every day. Hope you enjoy the brief separation from Chuck. Too much togetherness isn't a good thing, I can attest to that!
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Hi LL! It's Friday. Again. Hope time is moving along for you so that the 0 prednisone target is in view. Are you down to 0 yet? Check in if you are able. (((hugs)))
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Lea, I hope the long handled brush makes it easier for you.

I bought a cheapie from the supermarket or chemist when my shoulder played up. Then I discovered how nice it was for my lower legs.. until the brush head slid off the handle & landed on my toes. Ouch 😔

Apparently the brush head slides off the handle so you can use it like that too. I've wedged it on tighter now!

So please check yours!
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'I hated living in Florida in the summer."

Roger that, LL.

Many people think that Minnesota in the winter is incomprehensible but please understand you can always put on more clothes and still go outside to enjoy a sunny, windless -20º F day. Not so in the summer in Hell's Kitchen (aka south FL): you can remove all your clothes but once you do, you won't be any cooler and then you'll burn to a crisp...or get arrested.
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Lea,

I am sorry that you are still dealing with your dizziness.

I figured that you must have some kind of chair in your shower because you don’t seem stable enough to shower standing up yet.

Bringing the walker in is a good idea.

cx, enjoy your trip! I am going through gallons of iced tea right now with our heat! A friend of mine from Boston asked about visiting us. I told him to hold off until September or October and then we would be happy to have him for come over for a visit.
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Nhwm, I have a built in tile seat in my shower and I bring the walker in. I am way too unbalanced to stand alone. The dizziness has not let up at all, no.

Cx, a trip up north in August sounds great. I hated living in Florida in the summer.
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There you are, still being helpful to the rest of us. I didn’t even know that there was such a thing as a long handled shower brush. Gonna file that one away!

Hugs from Fl, where it’s hotter than blazes, of course! I’m looking forward to an August trip up north!

☀️🕶️⛱️
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Lea,

I hope your your new brush will help you to shower more easily. Has the dizziness let up any? Do you use a chair in the shower or can you stand without falling?

As always, sending hugs and all my love to you today.
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Nothing new to report on my end ladies. Same old same old. Today I will
attempt a shower with the new long handled brush I bought so I can reach my feet w/o bending down and risking a fall. Too bad it took nearly 5 months to order it 🙄. Better late than never I suppose.

We had to wait until the second week of July for summer to arrive here but now it's hot, in the high 80s and mid 90s. The rain has stopped too, at least for now.

I hope you all have a great day.
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Lea: You're very welcome.
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I’m glad that your 🩷 is feeling a bit better!

And, good for you guys that Chuck will be able to get away. Absence making your hearts fonder, and all that! 😂

Congrats in advance to your daughter! Praying right now that you feel well enough to enjoy all of the festivities! 🎉
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Lea,

I am glad that you are feeling a bit better.

The doctors will continue to study those cases and yours for many years to come.

The practice of medicine is fascinating and amazing.

My heart skipped a beat when you announced that you were cancer free.

Your combination of faith and determination to follow all of your grueling doctor appointments and hospital visits really paid off. You pushed through many challenging moments and made it!

I continue to be inspired by you and I hope that you know I keep you in my thoughts and prayers.
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I continue to pray the dizziness subsides. Nice news about your DD!
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LL, glad your emotional response is tamping down a bit. Could be the meds, yes?

Kite setting SS are prongs at the compass points.

(((Hugs)))
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Nhwm, there have been 4 case studies of ppl who had an audiovestibular toxicity reaction to immunotherapy as I've had. Four. 1 person died of the cancer. 2 had the issue resolve w steroid treatment rather quickly. And 1 person's symptoms remain unresolved.

I do remember what you said about your BPPV after covid Geaton. Trying to imagine myself THIS disabled for a year feels horrible, I will say.

RD, ty for the pep talk.

Llama, HHF, CXM, thank you for always being there for me. Love you guys.

I am definitely feeling better emotionally although God knows WHY. The rollercoaster of emotions has been awful, and having the tears dry up has been a good thing. Chuck will be gone on Fri night, all day Sat and Sun (to Scottish festivals where he sets up his tent) so GOOD! HA! Some alone time finally.

Plus, my DDs bf took her ENGAGEMENT RING shopping yesterday and purchased one!! A princess cut stone w a "kite setting" whatever that means. The photo is lovely. Don't know when he will pop the question though.....lol.
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Lea: Definitely keeping you in my thoughts and prayers. Hugs.
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I know you have been through so much the past few years not to mention a lifetime with a difficult mother. I just want to reiterate how unique you are. You have a special sense of humor that is always a delight to read here. Regardless of how awful you may very well be feeling on a given day you still often reach out to posters with sound advice. I know you know all this as you should. I just thought I'd offer a tiny pep rally on your behalf.
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Geaton,

I totally agree with you. Having some depression is absolutely normal when going through life changing experiences.

It would be abnormal not to feel as though this isn’t a big deal.
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Bm
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I’m going to keep knocking on The LORD’s door and keep asking Him to restore you!

Darn Dizzies!!
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LL, I'd be depressed too if I was going through what you are (although I doubt I'd be as rational, strong and productive as you've been... ). Keep giving it time to see what happens when you're at 0 taper. It took me a full year to get rid of my post-covid BPPV (and I realize it is not comparable and you're just sick to pieces of feeling like poo day after day). Time is the last variable. (((hug)))
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Sending you hugs and prayers today.
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Lea,

Has there been any cases similar to yours that you can draw upon in gathering information about how this will run it’s course?

I suppose my question is completely dumb because we are all individuals who have individual reactions.

Your situation in dealing with your particular cancer scenario may be one for the textbooks! Everything is well documented these days, so doctors will learn from your experience.
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Yesterday afternoon around 4pm, the depression lifted and extreme dizziness set in......a more debilitating type of dizziness than usual. It hasn't let up. So I'm in a better frame of mind but a worse state of being physically. I may need to get the walker out again. 😣 I have no idea what's going on, only that going on steroids for all this time was a mistake. A big mistake. Of course I had no guidance bc there IS no guidance on this situation. Sigh. All I know is every single thing they've tried to help me here has NOT HELPED me but caused me more pain and suffering in the end. Except for the IVIGs which havent made a difference one way or another. I think, once the taper is finished, I'll be back to where I started with the dizziness and the rest of it bc they didn't change the core issue at hand. The toxic reaction is still active in my body along with the super loud ringing in my ears, etc. Ugh.

Saturday I'm down to 5 mg and then off, so we'll see but I have little hope for "feeling better" once off the steroids. More like going back to how I felt beforehand but fatter and much worse for the wear now. 🙄

Thanks for the kind words and keeping me in your thoughts, ladies. I appreciate it.
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Lea,

You have been through hell and back. I am not surprised that you are struggling with depression.

Some people panic in a crisis. Ah…that is what happens to me. I am not especially good in a crisis.

Others plow through a crisis and then fall apart afterwards. I have a friend who is that way. You strike me as coping well in a crisis.

My friend is incredibly strong during a crisis but as soon as it’s over, it’s like reality sets in and it hits her like a ton of bricks. Then she falls apart with a crying jag.

So, maybe you have been surviving all this time on autopilot to get through this horrific experience but it is only now that you realize what you have been through. Plus, you are so sick and tired of being sick and tired!

I so wish that all of this tapering crap was finished! When it is finally over everyone will breathe a sigh of relief for you. I’m sure that you know how much we care about you.

Take care, Lea. One fine day, this will only be a distant memory for you.
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Lea.......
My thoughts and prayers are for you.
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Lea, to be a bit depressed has got to be "normal". You've been through a heck of a lot these past few years! And this year has been beating on your body. Take a breath.
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