Bonfire of the Goddesses
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Hang on to that knot ridergirl, but if you should start slipping we are here to catch and hold you while you get your grip back! (((HUGS)))
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Oh Veggy you stinker...the trooper that you are....dont be shy about how strong you really are...
Rider-----you just hang on girl....put 1 foot in front of the other.
Im tryin to make lemonaide out of those damn lemons that were pushed down my throat...
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Granny if you.figure that out give me the recipe....i loove lemonade ;-)
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hi all, nothing to add to the fire, just hello and ((hugs))
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Rider the songs that VR linked to a you tube---hope ---first --not a day entering a nursing unit of any speciality did I not say a prayer regarding hope---hope, that all i did that day would bring to whomever, or I did whateverI did for someone that It would help, do no harm, help their spirit and mine. The second song Moment--had difficulty hearing words, but I think i caught enough ---to live in each moment.
All can change in a second, but having hope for something better and living in the moment allows for the enjoyment for the gift of life and joy. As a worrier, I believe the thing I must work on the most is living in the moment. Let's work on that together Babe.
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Haven't had a chance to try any of the links yet altho someone mentioned john denver and i do own one of his cds and i love it :-) and yes i am trying hard to just do everything moment by moment and one step at a time. Sometimes the steps are awful big tho arent they Hon? Anyway, dr appt this aft and day off today so i'm just keeping on keeping on.
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There ya go Rider...one foot in front of the other.....and while you are doin it remember YOU ARE NOT ALONE...we are here 24/7...Like drs.on call.
I cannot drink lemonaide but make some for yourself.
Do something nice for yourself.
you are important and you mean a lot to all of us..
Nothing stays forever.the good,the bad or the ugly...my fav.quote.
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Awww thanks granny :-) dr appt today got my pain meds adjusted and a scrip for effexor. Seems t
o me i've seen quite a few.of us are on it - i'm a little reluctant yet to start it opinions please ladies?
Oh and throwing into the fire the screwed up system that had me waiting over an hour to pick up scrips. That were faxed three hours prior. There - i feel better already
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Rider doc's like effexor alot------It's not an easy drug and difficult to get off of, many s.e.'s --sorry , but true. But if you decide to wean off it I found an excellent weaning schedule.That utilizes prozac for the last weaning after you get down to 37.5 mg--Then the doc switches you to prozac b/c it can be used in much smaller dose increments. Fabulous wean schedule. Only tell you this now incase I wean more from here and not available. Tuck that little piece of info away.
One step at a time
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Badger and granny-----hello glad to see you by the fire. Pull up some ice water and kick your feet up
sassy0 -
Thanks sas ill keep that in mind for sure. Shes only got me on 37.5 right now, once a day for a week then twice a day after that. If and when i start the dang stuff.
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good morning sisters, glad to be here SAS and everyone.
Sipping a cup of coffee at the moment but cold water is my drink of choice.
Waked yesterday morning, nice cool quiet time of day at 4 a.m.! Every step is a prayer.
Day off work today for follow-up appt with surgeon. He'll do an ultrasound of my belly.
I feel good, no pain, but the dermabond is itching and it's hard not to scratch.
Will get out and walk soon, before the school buses start warming up. My usual route takes me past the high school and at the wrong time of day, it's stinky exhaust fumes - not healthy!
Love and ((hugs)) to all.
edit to add an update: saw the surgeon and all is well. I have some bruises but no pain, the incisions look good, and best of all I get to peel off the dermabond. I'm on exercise restriction for another couple weeks so no yoga but gentle walking is OK so I am continuing my daily walks.
He says the cyst on my ovary will resolve itself but was willing to order an ultrasound in 30 days.
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Badger----get those puppies out. The doc doesn't have to deal with the consequences. The first thing I did in 19196 when my twin was dx'd with er+ Bc was get a full Hyster BSO-tubes and ovaries----insurance fight at the time---not considered a treatment modality-------but my research--showed different------duh became a treatment modality
More recently to me this was a big laugh and serious shit. When I was dx'd on the same day with BC and a menigioma ----I did my research. My conclusion was BC<---->M. Which meant that you can have BC cause meningioma----or the reverse mengioma can cause BC...... The research 3 years ago showed that particularly related to ER+ BC. When I pointed this out with the supporting studies to my docs ---they looked at me blankly. A meningioma can be ER+------less so with PR. There was a definite relationship with ER+. I was blown off
When I had my meningioma removed at Moffitt in March 27th 2012, I was entered into a study a several state study. The study was for the southeastern USA. It was started b/c of the increased "Notice" of meningiomas in BC patients in this locale. I am in a study now, they have to declare this stuff may be related in the consent to study--in a prior time they didn't. I got blown off b/c the docs hadn't studied it. Yet in 2009 after multiple days study of evidence based research, I found enough material to make the connection. I would not have come to a concluslion liike BC<---->M without substatiation. Actually, the symbol I used was a very dramatic simplization of the problem. ---took much reading to develop that symbol.-----much reading------Someone interested in science does not make a reverse symbol without proof of support. It was there in 2009. Now I'm in a study.----I laughed. They will produce a report in years to come that there is a connection between ER+ BC and ER+ meningiomas and that the origin of which cause is unknown. That's why as soon as my meningioma started growing out it came----but I had to push everyone. Then againi'm either brilliant or full of shit. Either way today I walk, I talk, I live, I laugh--------so goddesses into the fire with bull shit-----
Oh that will dull the sparkles----who knows what makes the fire sparkle ---this would be a good thing to know----so we can add it to the sweet fire---------Ah a question?
Challenge--ladies
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Rider stay on 37.5 for longer than that and see how you do----------preferabally 1/2 that for several weeks-----study ssri's before you move up on dose.------you are depressed certainaly, but drugs can be trouble.-----be careful. I shouldn't interfere , but messing with brain chemistry can cause many troubles. Read effexors labeling info.
Shit I wish i could advise more-----hells bells I'm not licensed any more-------
Or even better ask for genetic testing for 2d6, 2c9, 2c19. These are the only drug routes known available right now. ( afew others , but they are related to coagulation). It will show whether you can metabolise the drug. If you can metabolize the drug , it will show if you are a slow, medium, fast metabolizer of the drug.
Your doc is doing what I call paint ball therapy. Let's throw it at the wall and see if it sticks. I should trademark that phrase.It pisses the shit out of me that this damn doctor gives one drug size fits all drug therapy. Your doc will just drop their jaw when you ask for genetic testing for the three above. Once done, you keep the report and all drugs can be applied to the same report.
There are many more routes in the liver--which is what this genetic testing identifies, but tests for those routes have not been identified yet. IF you look at the drug info it will identify route. Has been required for >ten years.
Babe what do you want depression relief or paintball therapy.Now do you have a clue why the doc's that weren't up to the latest stuff considered me a threat.
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One of the things I love about my PCP is the way he as adopted the laptop computer. He not only uses it for patient records and can double check medical records in a flash, but he will use it in the middle of an appointment to research a new problem or check for possible side effects. He has always been a good diagnostician, but now he has adopted the tools to help him be even better. And SAS, Over the years I have known several hospital RN's, all of whom call him both one of the two most respected and best liked by the other staff of all the Doctors in the area. The other of the two is my surgeon.
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Chabba---that is so nice to hear---isn't it----it is so comforting.----------hospitals and others are paying so much attention to that----good---the ones that throw instruments or put their fists through walls are getting fired. As well as the ones that treat staff horribly.
The doc's I have a problem with are those that don't stay on the cutting edge of what's available. When I walk in to a neurologist office and tell him about and describe the surgery that I needed for my brain tumor. He has no knowledge of it , and it was first started in 1994, and he charges me 200$. I give him my mri's and he sends me a bill for 300$. He doesen't Know/ hasn't a clue/ then want's to charge me---------wrong it got fixed.-------I was a nurse from 1974------had no use for doc's that didn't keep up within their own field.--a neurologist should know whats available in neurosurergy-----------doc's and nurses that don't keep up on what the new knowledge is versus what they were trained in school or residency are a danger. Believe it or not saw it every day. That's why I was considered such a threat. Don't mess with me b/.c I'm comin(g) prepared---you ain't prepared well look out.
I miss nursing sooooooooo much, I wasn't ready to give it up------between double cancer(DH) aND BRAIN INJURY AND TUMOR-------aw cowcakes
into the firewith lost dreams
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SAS...Eric Topol, MD's TERRIFIC book, The Creative Destruction of Medicine touches on what you explained to rider regarding genetic testing for metabolizing medicine. Reading his book, I learned there is now a genetic test to see how well patients metabolize, among other meds, Plavix. Nowadays, before cardiac surgery, patients get the blood test. Because the DH had a procedure years before the development of the test, he didn't have the test until I mentioned it to the doctor. Turns out, he was a borderline intermediate metabolizer. He no longer takes it...
Rider and dear goddesses, anti-depressants can be tricky but they can be G-d sent in many situations. The DH and his family could be the poster children for depression. It appears, the brightest and most successful ones in the family appear to be the most affected. Thankfully they all speak to one another and were able to tell one another which anti-depressant worked for them. They were pretty much conducting their own genetic experiment to see which medication worked best for them. Under the proper care, with patience, anti-depressants are a miracle drug.....0 -
Who needs these freekin doctors anyway.....most of them dont know shit.
We have the best info right here.
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I believe that grannydukes thats why i come here for ad vice ..before and after i talk to the drs. You ladies have so much wisdom....
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I agree ridergirl and granny, this is a great group with a huge amount of valuable information. I does sadden me though that most of that information comes from personal experience.
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Thanks SAS for the advice, I will consider it. Perhaps I should request a FSH test for ovarian function. Selfishly, I am worried about the loss sexual desire with an ooph. It is difficult to get 'charged up' as it is and I fear that losing the last tiny bit of estrogen will take it away for good.
I hate the decisions we have to make. Into the fire with both the rock and the hard place.
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Sassy I would have you on my med team anyday. Their paint ball therapy, I call shi*#y therapy.
Rider- I cannot tell you this either, no more than Sassy, but this is my experience, strength and hope..... there are flower essences and there is natural serotonins to take too. I couldn't take antidepressants, I was a zombie. I had to find my own way back to the light becasue sometimes I was so bad, I could not breathe, the light literally left me and I couldn't breathe. I got so I would tell Hubby, it is happening again. He woud get me the flower essence bottle I had made for the dark night of the soul, the back to the wall spiritually deflated part of life and I would recover. After a few years of this, nothing throws me, save a nightmare a few months ago that about did me in. The flower essences, I love them so much. They are liquid light, energy of the finest in life. If anyone ever needs to know more, I am free info and love to help.
So into the fire tonight, daughter's car accident (shared on Fuzzys Romp Room) she is all right.
Into the fire::::
......... funny thing about how a little bill for $233 is a huge one when all your cash is going to alternative tx out-of-pocket to keep you alive. We filed bankruptcy to get us away from house next to the outside wood boiler furnace. We moved from where we could have had 'free' living for a year or two, had to flee the place to save my life, one pet had already died. At holiday we borrowed $500 from DS for IVs and stuff I needed after surgery bcz we paid the attorney to file for us. Still have to pay her back, have half saved. We put all our earnings into IVs for me, alt tx, not Christmas, Hubby is still working doubles a lot, bcz I could not work or get disabiity. We asked for the court to let us at least borrow the $1600 tax return we wer to get in April, if only for a year so we could use it for my tx, since then I was having next to none, not enough money bcz we had found a place to move and it cost us a lot to do so. We explained we did this to save my life, that we had not been late on a single payment before the bankruptcy and fleeing our home. They said no, good luck and they were praying for me. I had to start working again from home, I cannot drive, besides, only one vehicle to save money. We also dropped Hubby's life insurance, to save money for my tx. What to do w no memory or focus? So I decide to work on eBay selling stuff for an alternative cancer tx fund for myself, took me two weeks of nonstop work to list 75 items, sold some stuff and my washer and dryer (using the rental property's w/d here) and all went for more tx. Hubby sold his gun collection, more tx money, but still I am going without all I need. If not for what I am doing I would be nauseous, weak, ill, dizzy, fall over backwards, no memory at all, completely exausted, shooting pain. With my stuff, I feel really good, I am good. Tenacious, stubborn, I keep going. I spent all this week re-vamping a website so I could start back to work w that area, not done it for almost two years, too ill, absolutely no memory until recently. This means sitting in the computer chair for 8- 10 hrs a day, I don't mind, love my work, but pain in left adrenal/kidney/back, legs and feet very swollen no matter how often I get up and walk, LE arm hurts like hell from this position within a half hour of typing/mouse, armpit where surgeon left the cancer in nodes (which I didn't know) that hurts esp down deep inside and the outside is numb as can be. So that is my story. Good news, I have a check coming from a business that was on autopilot, a miracle surprise. That will be the rest of money for my DS's loan repayment. Hubby worked overtime for holidays, will help since I need $186 to pay for the endocrinologists rx's - 4 rx for 3 mo ea, no insurance coverage and besides the natural ones are less than my co-pay would have been. But had to wait 8 days already to order, not enough money, so I go without.
And what do I get in the mail yesterday? A bill for $233. From the bankruptcy court for the trustee's work on our case. Seriously.
This all sent me into a tailspin, could not sleep. Pissed.
- disability for turning me down, saying I need five more quarter to collect dis income or whatever, I don't have 1 1/2 years to wait, I need help now,
- the court,
- IDEM for leaving us in that toxic smoke,
- the doctors who did not know how to advise me, sent me to surgeon too soon
- the medical profession for thinking sentinel node biopsies are enough to find all the cancer - like HELL
- the surgeon who didn't do all the tests or insist on them before surgery and who left cancer in my lymph nodes - FOR A YEAR I DIDN'T KNOW WTF and no wonder I was so sick
- the onc who led me on for two mo about innovative chemo I could choose then said there was none for me,
- the clinics that turned me away,
- the other surgeon who did a punch on a cancer lymph node when I told him only use the fine core needle, to me that means the cancer gernade exploded inside me.
- My family for not wanting the holidays as much as I need them,
- my DB for being too busy.
Have to do something with this. Thinking I need to write to all of them, or make appts to talk it out with medical professionals. I don't know how far to take it, what good it will do at all. But it is swirling around in my body and harming me.
And yes, there are flower essences for pissed, but I am angry for good reasons. So I still need to deal and let go. Somehow find the good of it all and process it and let it go.
I will be in a good mood.
Hubby just left for work, he leaves at 3:30 a.m. He said f' them, he is not worried about paying the trustee more than $20 a month, it will be paid, I come first.
I am going to get to work now. I like working again. BCO helped me get to this point, the mental stimulation, the community of it all, the experiences of others with tx, and knowing after all these years of me being so sick, two so bad I could not work at all, that I can do it, I can spend time at this and make it happen. I can think again.
I appreciate you listening. We say all this so we realize we are not alone.
LOVEEssa
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Oh damn Essa----im never gonna complain again....you poor thing
All i can say is it will change...nothing is forever....keep the faith(what ever it is) and always remember God only gives you what you can handle...(gulp)
I just said a prayer for you....huggggggggggggs K
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Hi Sistas! Have not been here for awhile. I have nothing to throw in. For me, life is good once again. I am through with PS - well, almost, one last appt on the 26th and the back to routine stuff. Feeling very good and sleeping the best I have in years. No complaints and no regrets. I hope everyone has a fantastic weekend. (((HUGS))) all around.
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Nice to see you come home JOJO......ya gotta check in once in a while.
just throw some marshmellows on the fire if you would!!!!
You know its always glowing!!!!!
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((Essa))
hi Jo!
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Essa--------so much shit. You are such a good soul. Will continue to pray. You're so right being able to come here and talk it out. I can't conceive how I would have survived the last 3 years if it weren't for here.
Rider--I let my emotions jump in a little too much. I stand behind everything I said, and totally agree with VR that antidepressants are a godsend when the right one is used. But genetic testing is the cutting edge for finding the right drug. You were prescribed Effexor b/c it is the most prescribed drug right now. That doesn't mean it is the best. Drugs fall into and out of favor. Effexor just happens to be the most favored right now. It's the "favorite of the decade".
The reason I suggested staying at the 37.5 mg for longer is------that may be all you need. The one size fits all which is 75 mg. May be too much. But you won't know that if you don't give yourself sufficient time to see what your response at 37.5 mg is. Plus there are older drugs that are less expensive-----way less expensive. I would suggest studying Prosac. It's very inexpensive compared to Effexor. It can be used in smaller doses and moved up in smaller increments. Because it is the only drug in the ssri group that is used in small does , it is the drug of choice during the weaning process. Weaning has to be done very slowly over many weeks.
My MH counselor got seriously interested into genetic testing after I taught him about it. He won't even suggest a drug now without it. It's changed his whole practice of 35+years. The testing shows so much of how the drugs will or will not work.
Look up any drug, go to the metabolism section. Look for Cytochrome 450 pathways. These are the liver pathways. I mentioned three. Plavik mentioned by VR, without looking it up I couldn't quote it's pathways. It may well fall into one of these three. I did some study for ChrissyB on Coumadin and there is a VR>>>> something VROICK May be close LOL may be not. The point is for > 10 years Pharm companies are required to identify and publish Pathways. Even though we may not have testing for a particular pathway yet. At least a doc can look at the pathways. One example, of usefulness is if a patient has trouble with drugs that follow a common/same pathway, say 3A4---the doc may make a choice of another drug that doesn't follow that path. This would be called an Empirical decision. i.e patient always has a problem with a drug going through 3A4, then strong likelyhood that problems will occur again, so, lets choose a different drug.
A thought if I can find it, that I would pass onto new nurses. Was "the right drug at the lowest dose that produces the desired response sought, will also produce the least amount of side effects". "The higher you go with dose, the more side effects will occur". "Then you will have to do different interventions to control the side effects". "This may mean adding another chemical to control side effects, that then can create more side effects". So, going back to the original statement ---"Right drug, at the lowest dose, that produces the desired affect, with minimal and tolerable side effects". I will also add that new isn't always better, older drugs that have stood the test of time, by not causing trouble may well accomplish the needed therapy and be cheaper to boot.
Rider---tried to make this the least technical that I can. Hope it worked.
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Badger, well my puppies have been gone since 1996-----I'm 62-----and there's no trouble, but finding a ready willing and able partner is a problem. LOL
Jo glad you see the end in site for the flap Yay!
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Essa--- the story of your DD on FRR --thank God--bless you all!
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Granny asked me to post a photo or two from my recent cruise. I can't get my Photobucket to work. Any other suggestions how I can get photos on here? Any help would be appreciated.
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