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NEDenise Downer Alert!
1 Attachment(s)
Hello friends,
Well, it's a case of SSDD... Same SYMPTOMS Different Day... in my case. I'm still suffering from being waaay off balance when I stand up or walk... My hand and arm shake when I try to use them... My speech is still "weird"... not slurred exactly, but not right either... And the MRI shows no reason at all for any of this. On a better note... the visual symptoms have receded... but have been replaced by great fatigue, and a mild headache. (Since last weekend, I've averaged about 16 hours of sleep each day... WHILE on steroids!) I know I should be grateful... and to some extent I am... that the brain MRI shows nothing new or tragic... but... feeling lousy all the time is really starting to eat away at that positive outlook, and getting on with life attitude, that I've enjoyed throughout this mess. And, the fact that none of the medicos can tell me why I feel this way is sorta disheartening too. The current plan is to start weaning the steroids slowly... again... but I'm not convinced that's going to help. I'm willing to try, but I wish I felt better while I was doing it. The thinking is that my adrenal glands are not functioning at all right now, and I'll feel better when they kick back in. We tested my thyroid function, and thank God that seems to be okay. I felt reeeeaaally bad last Sunday... but have felt a little better each day since then. Maybe things are looking up after all. Thanks for letting me "whine" and be weak for a while. All prayers and encouragement are welcome. Down to 7mg/day of dex... let the weaning (and whining?) begin! Love to all of you... especially to those of you coping with way more than I am... and doing it much better than me right now! Denise |
Re: NEDenise Downer Alert!
Denise,
I hope you are feeling well and able soon and your symptoms dissipate. I think of you always. I hate cancer, I will never make peace with it. I just want you to be o.k. and for you to move out of this space. Love Karen |
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Dear Denise -
I guess you have seen a good endocrinologist, but I wanted to mention it anyway. Maybe your hormones are also on the fritzz? You must have been tested for diabetes by now. I recall the the dreaded Decadron kicked our dearly departed Christine into diabetes. She actually telephoned me to warn me about that when I started treatment for my brain mets. There has to be something that can be found as the reason for your symptoms and not just surmises. So, in the meantime, keep watching feel-good movies, go to physical therapy and enjoy the wonder of the change of seasons. Or have a massage therapist come to you. Maybe something like massage therapy couldl unlock some of those areas of nerve knots? |
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Hiya,
I'm getting off the dex too. It's like we almost have to, so we can back to our old selves again. It really takes a toll, eh? Not easy to do. I still have the neuropathy, I'm going to get my 3rd infusion soon, getting my son's 5th birthday organized, so tired from the avastin, and having my next in 2 weeks then my final tx on Dec. 4th and can't wait!! It's a tough drug, in my case. I'm around Denise. If you ever want to vent about SE's, or Dex, or just want to chat. I'm here! Until next time my friend. I'm thinking of you always. Sending some dex whining vibes your way! xo Jill |
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You know what? It's fine to not feel like being a cheerleader every day. You're entitled to a little pity party. God knows you've earned it! I know it is your nature to be upbeat but when you don't feel like it, you don't feel like it. So be easy on yourself and indulge in some guilty pleasure. Chocolate maybe??
And, as always, keep the faith! XOXO |
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Denise
Balance could be a problem with the inner ear. Sometimes a little hair will break off in one of the 3 tubes that help us maintain orientation and wreak havok. Is the shaking only with one arm and hand or both? I'm just wondering if all your issues come from different causes instead of just one. I'm sorry that you feel shitty. I really wish that you felt great. We love you. Here's a cyber {hug}. |
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Huge Hugs to you Denise!! Glad you shared how you are feeling...this stuff really is the pits...good days...bad days!!
Know I'm sending prayers your way for strength & healing!! :) |
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Denise, I'm glad you're getting lots of sleep, because you must need it. All the sleeping makes me think your body is demanding the rest it needs to get better, and that's a good thing! Those poor adrenals need lots of rest!
You help others so much with their problems I'm glad you put yours out there so we can support you too! You have been through so much and accomplished so much I hope you will be very easy on yourself for a while. You have reason to be very proud! And relief is just around the corner... Love, Rachael |
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Aw Denise I hate to see you down. Still praying...
- Penny |
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Praying for you to feel better.
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Aw Denise that is too bad. But as you say good too, as no progression. excellent that you are sleeping! The sleep that knits the raveled sleeve or....the ravaged body? So long has been the past two years, so many medical appointments. So it is so great to get many many hours of healing sleep...the body shutting down to do its repairs. Esp the adrenals...the stress glands need to repair during sleep.
You are the most amazing marathoner ever. We all here love you so very much and like i said before, whether it is good news or not, or you just want to vent, please do it here where we can find you !!!!! Much love, and many hugs. nora |
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Denise, you know I love and adore you. And I agree with Bonnie, you cant always be a cheerleader. Hoping that the rest your body demands is the healing your body needs.
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I'm so sorry to hear you feel so crummy. You are an inspiration and I hope you don't feel you always have to be "up". As far as steroids I have no doubt the steroids could wreak havoc on your body. I was on much smaller doses for far less time and I felt like crap. Withdrawal was horrible. I give you credit for all of this and strength to get through it and get your adrenals back. The only good thing was my ankles were thinner while on it. Go figure??? I hope you have something good from it. Hang in there. We are tougher than this thing, no matter what we are dealing with. Sleep when you can and what you need.
Lots of hugs, Cathy |
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Aw, Denise sweetie, you can rant and rave and vent all you want - I can only offer good wishes, prayers and cyber hugs - and also, even though it's not your birthday - eat some chocolate, it's good for you!!!! :)
all the best caya |
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Denise, Just want to say I care about you, too, and hope all goes well for you in every aspect of your treatment. Chin Up, Sweetie...Hawaii is waiting for you!!!! Ceesun
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So sorry that you are going thru all this. I know you must feel scared, it's asking so much for us to keep the positive tudes all the time. "I don't know how this is going to be okay, but I know it's going to be okay" is OFTEN my only mantra.
We are here - with you and for you. Lean in right now. You will get your footing again, and be feeling better again, too. Sending tons of love. flori |
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Thinking of you, Denise - and love the attachment! Even when you are down, you give us all a boost. Sleep is the natural healer and I hope those nasty symptoms soon fade away. Cyber hugs from Oz.... Pam
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Dearest Denise, it's only natural to feel down at times, so no beating yourself up about that please! I'm so glad that you have shared with us your feelings, as you have already received some very good advice on this thread - and isn't that heartening?
I'm sending you hugs, and letting you know that you are in my prayers every day. Love Marie x |
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There have been some good suggestions. Have they checked your bloodsugar levels over several hours? Have they checked for a systemic Candida infection/overgrowth? Do your symptoms get worse after eating or drinking something with lots of carbs? Or do you improve first when you eat/drink carbs and then crash?
Adrenal problems can cause these symptoms too. There are, fortunately, several other explanations beside cancer. Hope they find a way to treat this asap. I have had these symptoms and they suck royally! Love Jacqueline |
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I am so sorry that you are feeling so poorly. I know steroids can be so horrid, I had a really hard time weaning off them. Hope you are on the upswing.
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