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I'm still here again.


Sam'swifeShirley

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Hi everybody,

Well another week has flown by and I'm still here. I've tapered my prednisone down to 20mg/day per the instructions of my pulmonologist and happy to report that my steroid myopathy (muscle weakness) is definitely improved and my esophageal ulcer must be better because my painful swallowing is also much improved. These are both steroid side effects.

The bad news is that even with continuous oxygen, my exercise tolerence is down to absolute zero. I think I'm going to go back up on the steroids. When I asked my pulmonologist if I should do that this past Monday, he said no. Well there are other pulmonologists.

I'm still living a cat's life. I sleep, eat and wash and that's it. It's time to sleep now.

God bless us all.

sam :roll:

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Hi Sam,

Good to hear from you. I agree...there are other doctors!

Mike is struggling with the myopathy too... and he is only taking 4mg of Dexamethasone daily now...but he is on Ery Tab and the pharmacist said that will "supercharge" the steroid... So he is wobbling around here...

We are leaving for Mayo on Monday. Hopefully they will have something - anything for us...

Keep in touch....Praying for you!

Love and hugs,

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Hello Sam,

My dad has been living "the cat's life" for a few months now. Oh, we get him out once a week, to a show or the mall or out to eat. He is alive and has hope and as long as he is not in pain or vomitting, we are happy to have him. I hope and pray you begin to feel well soon.

My dad said that the fatigue isn't the worst part, but what is in your mind...missing the old norm...the way he used to feel...the things he used to do...that is the worst part. He tries to think about his worst moments (in the hospital, vomitting for weeks, etc...) and is grateful that today is better than that. It's all he can do. And we focus on our great times together and the closeness we have now that we didn't have before.

Don't know if any of this applies to you, but I am hoping that you aren't getting down or discouraged. You are a great inspiration and there are over two hundred of us here pulling and praying for your quick recovery!

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Sam

Please be careful about reducing the MGs on your steroids. I have attempted the same thing twice and it has gotten me in trouble. I, like you, have that pneumonitis and take prednisone. My pulmonologist keeps trying to get me reduced and I just can't do it.

I got myself down to 10 MG per day for a week and had to go to the ER for lack of oxygen to the brain. So back up to 40 per day, then 35, etc. Am now on 30 per day and will see the pulmonologist again Monday. I am ready to tell him I cannot reduce below 20 MG. I will put up with the osteoporosis, broken bones, and cataracts. BUT I HAVE TO BREATH!

Am just today getting back to some kind of normalcy. I can finally walk around without feeling so weak.

Good luck to you and do what feels good for Sam.

God Bless

Sue M

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KatieB

That's says it so well. I long so much for something "normal". I'm beginning to think that I'm not going to make it back to work, even if the cancer is gone. I'm not ready to retire, emotionally or financially. I don't want to spend the next several years sleeping and watcing TV but don't have the energy to do much more and no one can promise me that I will. Maybe I need to increase my Lexapro (the latest and greatest antidepressant).

Sue M

That's EXACTLY how I feel about the steroids. I've been on Prednisone since November. Twice we tried to taper and twice I've ended up worse than before. I should have taken a higher dose for a longer time to start with but that's water under the bridge now. Don't forget that the steroids also increase your risk for heart disease. That just came out this week.

God bless us all,

Sam

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Being told I had cancer for the THIRD time almost did me in. Who has three cancers, much less survives? I worried about money--three times I had to take an extended leave of absence from work. I worried about money, college, and the state of the world. Bank accounts were drained.

Then finally I said, "if I'm gone, it won't be my problem". Sounds strange, but I was not living for the moment, and missing much.

:arrow: Please note, Dear Sam, that I do not even try to compare with your symptoms.

That's when I reread Tuesdays with Morrie.

And it will be two years in June that I have been with the therapist. I cannot tell you how far emotionally I have come since the first few months when I just cried. I'm actually thinking about cutting back on my zoloft. :wink:

One day at a time, or one hour at a time. Sometimes , when I can't cope, I just ask God to tell me what's next.

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