What is it called when you pray to have more grace? Or you pray to be more grateful?
Because I'm not feeling very grateful lately. And I don't like it.
I'm grateful to be alive. I really really am. Especially when you consider the alternative.
I am not grateful to be alive and in constant pain or high on drugs so I am not.
I am not grateful to feel depressed more than I ever have in my life. And I'm *on* antidepressants (what a load of crap they are) I think when my insurance company MADE me switch to a generic version it stopped helping. Or perhaps it's just the wrong drug for me. Hmmm.... Could it be I never needed anti-depressants in the first place and you damn doctors prescribed me one to help with the neuropathy in my feet but never told me it could have horrible side effects like sleeplessness or depression or mania or paranoia? That when I told you I didn't like it, you said, oh well, now we will have to switch you to Lexipro, but it's "like baby aspirin." Now when I try to taper off the anti depression generic crap, I'm really sad and feel super depressed. But who cares, you're alive, right?
I am not grateful to be alive when I can't sleep anymore. When no doctor can tell me why I can't sleep. When they all blow me off when I tell them it is awful. When they tell me it's the early menopause or the medication. "What time do you take this pill. Oh, morning. Well what about this? Yes. I see. Well, that just happens." No, motherfucker, sleeping only 3-4 hours a night doesn't just happen. Waking up and not being able to go to sleep doesn't just motherfucking happen!! I don't care what the reason is, you get paid a shit ton of money, you went to school for 2390239 years, find out why, pretty please? I can do my own guessing just by researching sleeplessness on the internets! I need it to stop and in order to do that, I have to find out why it is happening.
I am not grateful to have good bone density tests, "for someone who has had as much chemo and steroids and radiation as you have." What does that mean? On one hand it says NORMAL on it, but on another, you say that my back is weak from all the steroids, etc. That I should be careful so I don't fracture my back. Let's see. I asked you over a year ago about adding a med to my personal pharmacy for bone density. You blew me off. I'm cured, so who cares if I can barely move?
I am not grateful to have excellent pulmonary function tests "for someone who has had as much chemo and steroids and radiation as you have." Um. Jiggafuckwhat? Even just the 'fit test' at my gym shows reduced cardio function in a little over a year. I tell you I'm out of breath quite a bit, but who cares? I'm alive, right?
My magnesium is low, but what's new? It's not low enough to need an IV, so move on. Minor blip.
My immune system is still low, but what's new? It's not low enough to need an IV, so move on. Minor blip.
I cannot live on pain meds and muscle relaxers. I cannot function on these stupid anti-depressants. I cannot live on 3-4 hours of sleep. I cannot live thinking that I belong in rehab or need a month at a spa to heal myself. Or that a perfect day for me would be to sleep all day and all night. I'm basically on a vacation already. Why should I need a vacation?
I dread every day where I have to look at that huge handful of meds, anti-virals, anti-fungals, immunosuppressants, painkillers, steroids, vitamins - the daily cocktail that saves my life. They get harder and harder to swallow each day. I even take a pill solely to protect my stomach from all the other pills. I bet my liver and kidneys hate me. HATE I say.
I know it's complicated. But why do you all save people from cancer, just to blow them off once they live? To say, well, you have a little graft vs. host. You LOOK good (fuck all if I look good, I barely recognize myself in the mirror anymore). Don't tell me I look good.
I know I don't LOOK sick, but I FEEL TERRIBLE. And the only thing that makes me feel better is a handful of drugs. No one should have to take daily vicodin. No one should need two ativan to sleep. I don't feel safe taking all these meds. Something's gonna give and I don't want it to be me. I didn't come this far just to wind up completely defeated and feeling helpless.
That's soooo not my debu_style.
I hate feeling ungrateful. I am grateful for my family and friends and my life. I am grateful for my little bird speaker, who as I type this at 5am just came in bed and whispered good morning and snuggled up under the covers on this chilly Friday morning and pressed her little freckled nose up against my arm and promptly fell asleep.
How do you balance all the pain and sorrow and defeat with the true grace of God's blessings?
I want to say, "I can do this." I'm very motivated to lose weight and get fitter and feel better. But I just don't feel like I can do it anymore. To have unexplained pain. To have unexplained depression. To feel so out of control over a body that is betraying me once again.
I love working out. I feel strong. I am determined. But hope is not carrying me through this one anymore.
I feel like I did when I first got diagnosed. I had symptoms. Doctors just blew me off. I felt crappy for months and months. It's really sad when you are relieved that someone finally has a diagnosis - even if it is cancer. At least you know there is a reason for feeling awful. Now there are at least 923049230 reasons for every symptom I am experiencing. I just want to fix it. I just want to be physically able to live again.
I'm ungrateful. I pray that goes away.
No assignment. I have a terrible headache now. I hate whinese! I'm just going to snuggle up to the bird-talker until the alarm goes off.
Posted by debutaunt at February 8, 2008 05:37 AMDeb, a friend sent me this prayer from St. Theresa today. It reminded me to place myself in the stream of Divine Order.
I so understand your frustration. I told my doc yesterday that I just want to feel like myself again. But I am myself -- the crabbier, less patient self, to be sure.
I have to keep injecting myself, not with hope, but with acceptance and faith. Don't give up, Deb. Do take magnesium. It works. Do take small steps, joyfully if you can, grumpily if you must. Call the people who inspire you. Make them partners in your pursuit.
And hang in there.
You are loved and thought about and prayed for. We'll make it, lambchop!
Collins
(Here's the prayer)
May today there be
peace within.
May you trust God that you are
exactly where you are meant to be
May you not forget the infinite
possibilities that are born of faith.
May you use those gifts that you
have received, and pass on the love that has been given to you.
May you be
content knowing you are a child of God. Let this presence settle
into your bones, and allow your soul the freedom to sing, dance,
praise and love.
It is there for each and every one
of us.
I know several people whose docs have basically shrugged their shoulders and said, "We don't know. Learn to live with it." That's just so wrong! I think the docs don't like it when they have to admit they're not omniscient, and they just want to get you out of there so you don't remind them of it.
I'm sorry you're still feeling poorly. Hang in there, Deb--I'm praying for you!
Posted by: Sharkey at February 8, 2008 10:32 AMDebs--I am so glad you ranted and got this all out.
Don't have anything else to add except that I hear you, and often feel the same myself. Hope you got some cocooning time with the little Munchkin and that that helped.
I'm hiding out from the world today myself--just couldn't face going in for treatment, so I called and said I have the flu, which is a gross exaggeration. But I didn't feel like admitting that I feel a bit depressed and didn't want to be there.
Jeanne
Posted by: Jeanne Sather at February 8, 2008 01:38 PMDeb, honey, I'm sorry this is hard right now. I can't possibly understand your pain or your fears however I'm glad you're writing about them. If you feel blown off, I hope you tell your doctors that you feel blown off. Explain it to them. Keep talking, hell, YELLING until someone listens to you. I don't know the answers however I know there are doctors, nurses, medical staff somewhere that know how to listen and explain things in a way that is at least respectful feeling to you. You are in my thoughts even if I don't stop by every day. {{{Deb}}}
Posted by: traci at February 8, 2008 01:41 PMI have nothing inspiring for you. But I do believe
in you. You are such an inspiration to all of us
even when you don't feel it yourself. We pray for you each night.
Hound the doctors.
Posted by: claire at February 9, 2008 05:37 PMHey, feeling crappy doesn't make anyone feel grateful. Big hug for you and Zoe.
Posted by: Lil' Michelle at February 9, 2008 11:51 PMDammit, woman. I want you to feel better.
Come to Dallas.
((((HUGS))))
Posted by: Kami at February 10, 2008 03:44 PMDeb - I know exactly what you mean. I just underwent another round of Rituxan and another procedure and my port-a-cath is flipped backward. I've been in pain and unable to sleep. My bone density sucks (but insurance won't pay for meds because they're only F.D.A. approved for postmenopausal women, and I'm not one of those). My lung function tests are terrible, but I don't feel lucky when I'm reminded how lucky I am not to need oxygen.
These doctors have saved your life (and mine) but at what cost? They can't save our QUALITY OF LIFE? Two things I think might help you are a pain specialist (who knows more about chronic pain and knows all of the options to treat it) and a psychiatrist. Not because you are crazy. Far from it. You are depressed because you're in constant pain! Depression causes pain and pain causes depression. Along with the steroids, anxiety drugs, and, if you take them, drugs like Reglan. You need a psychiatrist who can sort through all of the meds you're on and see which ones might be causing the issues and whether you can find another drug to do the same action with fewer side effects. The psychiatrist should also be able to get you the brand-name antidepressant by contacting your insurance and letting them know the generic doesn't work for you. If nothing else, ASK FOR SAMPLES!!!! Ask your doctor's nurse if there's a rep for the pharmaceutical company and ask him to get samples for you!!! I worked in the medical field for a LONG time and it can be done! They might also get the brand-name drug for free from the manufacturer for you on a patient assistance program!
Why should you have to feel this way? You are not crazy, your body is! I hate it when people try to sunny-side me when I get in this mood. Yes, I'm lucky to be alive. No, I'm not entirely satisfied. I still can't work, can't satisfy my husband as much as he wants, can't bear more children, can't do the things my peers do, and everyone thinks I should just be happy because I 'don't look that bad.'
E-mail me if you have ANY questions. BE FEISTY!
Rachel Y (Lupus girl)
Posted by: Rachel Y. at February 11, 2008 11:22 PMHi Deb,
I saw this entry via Jeanne's blog. I just wanted to say that I agree with Rachel: it seems that you could sit down with someone and lay out all the drugs you're taking. You never know how they are all interacting in your body. It might be a long process, but maybe by eliminating one and observing how you feel, you can figure out which one might actually be making things worse? Or counteracting the antidepressant? After my bilateral mastectomy in November, I threw up twice in the hospital on the second night - they had me on morphine, an antibiotic, and an anti-emitic, and I was still recovering from the anesthesia and the other three or four drugs they put with it during surgery. Then they switched to another antinausea med and a different antibiotic and I still felt nauseous. All I could stomach that day, literally, was ginger ale. So I stopped all the meds, except for Tylenol for pain and the antibiotic. It still took me several days after that to have a normal appetite. The doctor wasn't sure I was making the right choice, but I felt that I'd rather have pain than the nausea. My point is that our society and culture and our medical system has become programmed to keep throwing pills at problems, but they usually only look at how one pill affects one problem. They don't look at the system as a whole. I don't see as much research being conducted to try to understand how all the pills interact with each other and how our different body chemistries might metabolize the drugs differently. Anyway, it's just something to think about.
Hi, all--and especially Deb.
I feel a bit shy about what I'm about to say, so I'm going to offer a little data about my history. Five time breast cancer, spread over 20-some years. Currently undergoing chemo for nodes in neck.
I have fired more doctors than is civilized. A doctor will never EVER blow me off. Before I accept a doctor as my healing partner, I get them to agree to save their gloom and doom.
A good doctor nods in appreciation that I take such a rabid interest in my care. They know folks like us make it, that we would probably not still be around if we didn't.
FIRE YOUR DOCTORS. I found a place where they won't give up and they've got a drug or herb for every side effect. They don't overdue, they work with naturopathic cancer specialists. Ask around, you don't have to go where I go. Get that anger out front and get it like you need it. (When living in one small town I had to sort of drag a doctor along a bit, but I knew I had to move to some other place and find a real healer.)
I'm currently going to the Cancer Treatment and Wellness Center in Seattle. They don't quit on you EVER. (I don't get a toaster-oven if you go there, or anything. Honest.) They are affiliated with the Cancer Treatment Centers of America. Reeeaaally different, and I've been around this block for a long time.
As for the anti-depressants, see a specialist. They are deadly, they rob you of your life experience and skew your outlook. You can do this. They just want to shut you up. Now you're hooked. DON'T FEEL HELPLESS--it can be overcome with intelligent help, and not from someone who just switches you off to another anti-depressant (accept, perhaps, one that is meant to wean you to a lighter, more easily quit drug--I dunno about that.) We thought my friend Kim was going to die from the pain of decreasing her drug. Now she is walking, laughing, talking, driving and yelling thank you to the universe. You can do whatever it takes. You already are, if you think about it.
Love to you. Let's kick butt!
Posted by: Sharon in Bellingham at February 18, 2008 06:32 PM