Follow
Share
Read More
Find Care & Housing
Bm
(1)
Report

I am so sorry you don't feel like your former self. There is a poster you didn't care for (very understandable) who is recently active with inane responses. I recall very humorous remarks you used to make regarding this situation. I feel as though AC has become this clandestine forum with all they claim to be attempting to fix yet most remains the same. It has become so easy to remain anonymous which is not really ideal but nothing else to do about it.

I have had many days in my life when I didn't want to get out of bed. Now I am as sick as a dog after spending time with grandkids and catching all they had yet I keep getting up. I think there is no longer the hopelessness regarding my mother. My wish for you is the desire to want to get out of bed and I realize the dizziness makes that very difficult but I hope you find ways or times to overcome it. You have so much to offer to those near you and to all of us far away. Please stay strong.
(6)
Report

LL, thinking of you! ((hug du jour))
(3)
Report

Sending hugs, prayers and love your way!
(1)
Report

Riverdale, I get up out of bed and dressed every day. Today I'm going to see the Opthamologist about my eyes which have been bothering me for 2 months now. The poster you mention I STILL don't like and STILL leave comments for, yesterday was the last one in fact. We have to remember that comments are not anonymous for everyone....some people are able to see all avatars and don't have the issue the rest of us are having.

GrayGrammie, I forgot to thank you for the Aspercreme idea! I may give it a try myself on the soles of my feet but the huge headaches have greatly subsided, thank God.

The IVIG did nothing to improve my dizziness, unfortunately. I'll go back on 10mg of prednisone on Monday if there's no improvement by then. What I have noticed is the neuropathy in my hands and feet is gone......and IVIG is used for neuropathy which I did not know. So that's a good thing. The NP could not tell if the lump on my outer elbow is a lump or part of my anatomy so she said "keep an eye on it" as if I wasn't going to do that anyway.

Dr C came by to chat while I was having my infusion and said he had a couple patients w Myasthena Gravis as a result of immunotherapy. Both of them DID recover in time, about a year. So he's not going to consider my situation permanent at all. He wants to proceed with IVIG infusions every 4 weeks so I'm okay with that.
(13)
Report

Lea,

I can’t imagine having to keep up with all of what you are going through.

You have done all that you possibly could to make this tolerable. I use the word tolerable very loosely, because I know that there are days when it isn’t very tolerable at all.

Our hearts are with you today and always.
(3)
Report

Love the positivity from Dr. C.
(2)
Report

Hope today's appointment went as well as possible
(1)
Report

RD, well I have inflammation of my inner eyeballs known as Iritis:

Iritis is the inflammation of the colored part of your eye (iris). It can cause symptoms such as eye pain, light sensitivity, headache, and decreased vision. It can lead to serious problems such as severe vision loss and even blindness. Infection, injury, and autoimmune disease are major causes.

Maybe that's why I'm getting so many headaches. I have blurry vision, itchy eyes, and sensitivity to light along with crusty eyelids and gritty eyes. The idiotic NP told me to wash my eyes out with baby shampoo yesterday! I told her absolutely not until I got a diagnosis from the Opthamologist! Ridiculous. The Kaiser I Care team called me yesterday and got me an appointment today, The doc prescribed steroid eye drops 4x a day and I'll call him in a week for a follow up. This is probably coming from the inflammation of my central nervous system, the audiovestibular toxicity reaction I had to the immunotherapy. Yet another lovely side effect 🙄

I will email Dr C later and ask his opinion.
(5)
Report

I'm really sorry you're having this eye problem. I hope you'll find relief for it.

Someone also told me to wash my eyes out with baby shampoo! I was flabbergasted, but it seems that people think eyelashes need washing and that baby shampoo is beneficial for the follicles? (This suggestion came from someone who isn't known for good common sense, however. She believes that a demon inhabited her ex and that she'll never be able to use a computer because of her body magnetic fields being out of whack.) Note: I didn't wash my eyes with baby shampoo.

I think of you often, Lealonnie, and keep you in my prayers.

Love from Fawnby
(3)
Report

Oh, my gosh with that NP. What in the world could shampoo do to help your 👁️ situation? Does she not see all of your other side effects? 🤦🏻‍♀️

Good to hear about the treatment helping your neuropathy! SOMETHING good coming out of all this craziness! 😛

Still praying for the dizziness to leave already, so you don’t have to go back to those steroids. 😘
(4)
Report

Fawnby, did this person also ascribe to putting leeches on her skin to suck all that bad demonic blood out? 🙄 At least she wasn't an NP you were paying $$$ to for a consult! 😂🤣😑

Cx, unfortunately the dizziness is no better. I was praying for a miracle myself. But so far, nothing has worked to calm this down. I think it just has to run it's course, personally. I hope it has no other tricks up its sleeve, either.
(7)
Report

Lea, (((hugs))). Scrubbing your eyes with baby shampoo is a treatment for marginal blepharitis. Probably not what you have.

It was recommended to me many years ago for my pre-teen daughter's crusty eyes.

I will say that there is an awful virus going around t he at starts with pretty severe conjunctivitis; it gen proceeds to put you in bed with total exhaustion for a week. My ex, one of my daughters and I all had it a few weeks back.
(3)
Report

BB, I don't think it's a good idea for medical people to be telling us to wash our eyes out w anything when there's been no diagnosis made. I don't have blepharitis, no. Or that awful sounding virus that starts with conjunctivitis. I have Iritis, as diagnosed by my Opthamologist thankfully, after he looked inside my eyes with his equipment to see the inflammation. My eyes are swollen and red and look like little slits.
(4)
Report

I have had iritis. It cleared up on prescription drops, and the time after that I just closed my lids and applied neosporin on top, like how u do with baseline when you take eye makeup off. I had relief within two hours.
(5)
Report

Lea, why do doc's prescribe steroids for everything? Even for animals. When my cat Daniel had lung cancer two yrs. ago they prescribed prednisone. All it did was make him crabby and manic. He still died 6 weeks later. I'm thinking he would have probably have enjoyed his last 6 weeks more had we not given him it.

I'm on a waiting list for a new doctor. I can't stand my present doctor. I find I forego seeing him even if I'm ill cause I don't like him or trust his judgement. It's a year waiting period though so unfortunately I'll need to probably see him again.

Next time I buy boxed cereal I'll look for a license to practice medicine inside cause I think that's where a lot of doctors are getting theirs these days.
(5)
Report

Gershun, that's sad about your cat, I'm sorry. At least my steroid drops are just topical.

I'm so glad you're getting a new doc! Yay! Too bad you have to wait so long. Boo!

PeggySue, Neosporin on the eyelids would not help me with an inner eyeball inflammation.

This morning my eyes are more open for the first time in months. They've been slits. I haven't been able to see much of anything for blurry vision, even with 4x magnification glasses. Nothing from a distance like the clock. I can already see a bit better after 4 installments of the rx eye drops, thank God. DD reminded me that Dr C said side effects can keep coming around for a year or more after an immunotherapy treatment and this Iritis is no doubt one of them since it's in both eyes. The Opthamologist felt it was definitely systemic in nature and since my central nervous system is already inflamed, there you go. I have an email out to Dr C too.
(6)
Report

Bm
(0)
Report

Glad to hear that the drops are helping you! 🎉

Hugs from Fl.!
(4)
Report

Lea,

What an awful thing to experience with your eyes. I am glad that you are feeling some relief.

Hugs sent your way today and always!

Gershun,

So sorry about your kitty. Our animals truly are part of our family. I know that you miss him.

Glad you are seeking out a new doctor. It’s important to feel comfortable with our doctors and to be able to trust that they are qualified to care for us.
(3)
Report

Thx Lea & Need for your thoughts on my kitty Daniel. I miss him lots.

Lea, so sorry about your eyes. I hope they feel better soon.
(3)
Report

Lea: I am glad that your eyes are more open. That is a bit of relief.
(4)
Report

Gershun: So sorry about your kitty.
(2)
Report

Thx Llama, he died two years ago Aug. 18th but it still seems like yesterday.
(3)
Report

Gershun,
What kind of boxed cereal do you suggest buying?
(1)
Report

Dr C emailed me today (The man never rests) and said the eye inflammation is most likely due to the immunotherapy inflammation. So that's better than something NEW to add to the chaos 🙄

I'm supposed to start 10mgs of prednisone tomorrow but I just can't bring myself to do it. I'm going to wait another week to see if there's any improvement.

Its 60 degrees here today after 3 weeks of mid 90s. I love it.

I bid on and won 2 online auctions last night for a strand of garnet beads and matching earrings and a box of assorted jewelry, pins, necklaces etc. Each lot was $5.00. We're going to pick them up later today, it's very close by to my house. Just what I need.....more bling to wear around THE HOUSE 😑. But $11 is better than the Limoges boxes I was in a bidding war with someone on the other day and finally backed out at $165. Ha!
(10)
Report

I am glad you are waiting on the prednisone. You worked so hard getting off it. It makes sense to wait at least that long to maybe have to start taking it again if you need too.

And congratulations on your new bling.
(3)
Report

Gershun: You're welcome.
(2)
Report

Lea: Congratulations on winning the bids! I don't blame you on holding off on the Prednisone.
(5)
Report

Send, I like Shreddies. I remember when we got cereal as kids there would be a small toy at the bottom. We would always try to dig it out without eating the cereal and make such a mess.

Lea, I hope you can do without the steroids especially after weaning yourself off of it.
(1)
Report

Start a Discussion
Subscribe to
Our Newsletter