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atedj
08-02-2006, 02:04 PM
Is anyone else sick of all the pills several times a day? I think it's a love/hate relationship. I'm grateful the meds help me lead a semi-normal life, but I hate the side effects and withdrawal I go through when trying to cut back. I hate being dependent on the stuff!

pinkjmf
08-02-2006, 02:29 PM
I know that is a real thorn in my side. I used to be a person that didn't take any meds. I didn't want anything in my body that was not supposed to be there. Now I take 12 pills a day just to function. I was in denial for a long time. I have tried when I was first diagnosed to not take any meds thinking that nothing would happen. Boy was I wrong. You live and learn. I use to see my grandmother take all her pills and I couldn't imagine that being me. Time changes everything. Time also changes your perspective.

ButterflyRN
08-03-2006, 10:20 AM
I'm definately a polypharmacy! The worst part is that you just can't take them all at once and get it over with either. Some are on an empty stomach while others have to be with food and some can't be taken at the same time as the others because of drug interactions. It's so frustrating. For the longest time the only med I took for the lupus was prednisone and then the IV cytoxan treatments. Now I take 8 different meds by mouth. I HATE PILLS :mad: But what ya gonna do when you need to feel better :lol:

buddhabelly
08-03-2006, 06:18 PM
Yes, I admit it... I am a PILL POPPER! :o Pills taken with food, pills taken 2-3 hrs after a meal OR 1 hr before a meal :roll: I take my prednisone with my breakfast. Then I'll be hungry again soon afterwards, but, I can't eat anything until 2-3 hrs later, because I need to take my other medicine. So I starve until then. And after I take that medicine, I have to wait another hr, before I can eat again. Aaaaaaaahh! :x Then with those darn headaches we get, I'd be popping a tylenol here and there. Call me a drug addict! :crazyeyes:

SoleSinger
08-03-2006, 07:45 PM
Yep... Just hand me a bottle of Vodka, and I will be Karen Walker from Will and Grace!

"Honey... what's going on here? What is that? What are you doing?"

beautifulbeluga
08-04-2006, 08:50 AM
Hi there:

My husband is a real no meds man and he is always trying to tell me I'm sick because I take too many pills. I am presently only on placquenil and advil and am suffering like hell. About a month ago I got tired of listening to him and went off my placquenil and advil. Put my self in a real flare in my colon and had to go on antibiotics (x2) and my joints and muscles hurt so much I couldn't hardly move, sores on my head and mouth, exhaustion and rash on my arms. Went back on both about three weeks ago but still in bad shape. Lesson to all of this? Husbands sometimes are "stupid". Am this day off to my rhummy's for tests and prednisone.

pinkjmf
08-04-2006, 09:10 AM
You need to listen to your doctor I know your husband means well, but he does want you healthy ???? Tell him to be healthy my body needs these meds. He does want the best for you or he would not have even said anything about your meds.

atedj
08-04-2006, 10:36 AM
I think it's ideal to think of a life without meds. But let's get realistic, in order to HAVE a life, sometimes you need them. That's really hard to admit because I've always been the type to go to natural doctors and try suppliments before prescription meds. For me, the trick has been to find the lowest dose my body needs to feel okay. I don't want to take more than I need because of the side effects. And I understand about your husband wanting you to get off the stuff. Mine does to. But he has come to realize he'd rather have me taking pills that I need than listen to me moan in pain. Take care of yourself and hopefully the prednisone will kick in soon. It worked really fast for me the first time!

Milagro
09-12-2006, 02:06 PM
I was just thinking about this today. I feel like I need to go get one of those plastic organizer boxes with AM, MID AM, NOON, MID PM, PM, BED written on seperate compartments.

peach224
09-12-2006, 02:14 PM
Hey, I have one of those organizers, and it works wonders. There is one time of day that I don't have to take pills, and that is at lunch time. I keep tylenol and painkillers in that spot in case of emergency. The great thing about the case that I bought is that it has a little case inside for each day of the week that can be completely taken out so I can take just the pills for that day in my purse, or if I go somewhere for the weekend, I can just take those three days, not the whole seven day case. It makes me feel like a little old lady sometimes (I mean 15 pills a day, jeez!) but it makes me remember better when and how to take the stupid things.

littlered
09-20-2006, 12:32 PM
when all I had in my medicine chest was toothpaste and deodorant!! Now I can't even fit all my meds in the medicine chest...I have a medicine cabinet in my kitchen. Pills for everyday....pills for when I'm feeling too antzy...pills for when I hurt...pills for when I'm too down...pills to help me sleep...hey WAIT a minute...what's this pink one? well, I must need it....*gulp*...LOL

overit
09-20-2006, 03:21 PM
Yesterday I took 20 pills plus 2 rx drinks. Today they upped my dose (add 2 pills a day!).

I have three pill organizers (am, pm, and vitamins), a canister of rx drink mix in the kitchen, plus an emergency dose in a fourth organizer in my purse (I tend to forget things...!) That's just for my standard stuff. Now I'm fighting pleurisy etc and on medrol and ibuprofen which I haven't even tried to fit in the organizers yet. Guess you know what I'll be doing tonight.

The organizers are great - I don't have to think about what I'm supposed to take in the morning when I'm still asleep or at night when I'm too tired to care. And if I do forget, I have a visual reminder of it 12 hours later, which usually explains away some weird symptoms I'd had that day!

CLEAR Kendra
09-22-2006, 05:04 PM
I am completely understanding this thread! I am on about 20 different prescriptions including the lotions and creams. I currently take about 40 regular pills and 1-10 as needed pills everyday. I have been over 50/day. I have 3 pill organizers including one that has AM, Noon, PM and Bed separated. I got to where I couldn't remember which pill to take when or even tell some of them apart so I had to go to the 6 speparation system. I have 3 alarms set on my phone to remind me to take pills. Frankly it is ridiculous.

I get so sick of popping pills that there are days I have flat out refused to take them. I just feel rebelious and say I just can't deal with it today. That hasn't happened lately because I have had a recent flare and I just can't afford to miss a single pill.

overit
09-23-2006, 02:58 AM
Glad you found the multiple container strategy, it is easier than figuring it out every day! I'll have to try the cell phone alarms - I tend to forget to take the meds and then have to stay up very late (can't take the last med until 2 hours after the prior evening set...)
I made it back to work today for a few hours (first time this week). My boss is kind of clueless especially since I don't look sick (hah) and I don't like to talk about personal medical stuff at work. So I figured I'd drive the point home and told him I had to take 24 pills yesterday. The look on his face was priceless. Maybe he won't send me any more emails about making up my missed time, huh?

carolfer
11-10-2006, 01:20 AM
Hi! yes five years ago i very rarly too a pain killer for a head ache now i am on over 30 pills a day my husband sorts them out for me that why i,m not sure of the amount plus my lollipop pain killers i do get very depressed especialy when the pain meds are not doing what they are suppose to which is daily at the moment.carolferxx

littlered
11-10-2006, 07:18 PM
welll, my new doc yesterday took me off one medication, but then prescribed three more. That puts me up to 15 different medications per day. Then, after next week, he will replace the prednisone with something else and he said probably more meds, depending on how my kidneys look.
I am going to HAVE to buy a pill organizer. Who is the maker of that one that you use, Peach? can you tell me where you got it, or is it online?
the thing is, sometimes I don't know if I am remembering "Yes, I took that one already today" or if I am simply recaling taking it yesterday. Does this make sene to anybody else in here: Or am I ust off on one of my lupus brain fogs?

peach224
11-14-2006, 08:47 AM
The Organizer I have is by MedSun, Cepia LLC. I purchased it at Target and they had several different varieties. It was reasonably priced too, I just don't remember exactly how much right this minute. It is a pretty purple color. I spend about 30 minutes every Sunday evening filling it up for the week.

Hope that helps.

Henry
11-14-2006, 03:51 PM
If you're packing pills, take along proof that they're yours
Carrying medication in original bottles may be bulky, but that's the law.

http://www.latimes.com/travel/columnists/la-tr-healthy16jul16,1,3795675.column?coll=la-travel-columnists

GlassHalfFull
11-17-2006, 05:37 PM
Since I assume all the most visible Hubbardites with be out of the country at TomKat's wedding this weekend....

blainedude06
11-24-2006, 09:31 PM
Well i was just diagnosed i have never been a pill popper and now all of a sudden i have to take 1,2,3,4,5,6.... 6 pills a day, now thats not something i want to get used to is it?

Saysusie
11-25-2006, 04:25 PM
No, I suppose we never get used to it. Myself, I take 1,2,3,4,5,6,7,8,9 pills each and every day :?
Saysusie

april_bride
01-21-2007, 04:16 PM
Oh my gosh, I could totally relate with how everyone is feeling on this post. I have SLE. Scleroderma, Diffuse Nephritis, Raynaud's Disease, Pleurisy, Pericarditis, and Pulmonary Hypertension. 16 (various) pills keeps me going every single day. I do my very best to organize all my different medications certain ones I have to take with food, others I need to take with empty stomach, others I need to take by itself, and others I need to take at night time.

My last visit I got totally nagged by my Nephrologist because my last test results came back and all my numbers are skewed - higher protein count, lower white count,etc...where she's expecting to see good numbers since she's doubled up my Cell Cept. I told her I might have missed a few pills here and there - she got furios and told me I'm on denial - its time to wake up and smell the coffee "You are sick and you need these meds to get better, with your kidney problem and all other issues you have with Lupus, if you don't listen to your doctors and take your meds you will die!

I didn't like being told off. But I know it was my own fault for being stubborn. I realized as much as I hate popping all these pills, knowing all its side effects and all....overall these meds do help us...these meds keep me alive because I know without them I don't think I'd be able to live with the illness.

IloveHistory
01-28-2007, 06:51 AM
Hi!

Yes! I can totally relate to what you guys are saying! I always feel like a pill popper and the fact that my best friend is practically 100% healthy and takes no pills whatsoever, makes me feel even worse! :( I'm sixteen, so most people my age are not on any pills and therefore, do not understand. Luckily, I have a friend who understands exactly what it's like to have to take so many pills. She had a liver and a kidney transplant when she was eleven (she is seventeen now) and also has Idiopathic Thrombocytopenic Purpura (an autoimmune blood disease).

I also have one of those little pill organiser things, just like peach224! :wink: They're great! :)

I am SO sick and tired of these annoying people who tell you that your pills are making you sick and that if you stop taking all of them (including the vitamins and minerals! :?: :? :roll: :shock:), you will feel 100% healthy! That is the biggest load of RUBBISH that I have EVER heard! My mom's friend's husband told me that I must stop taking my vitamins, etc. and that I must even stop taking my Anti-Epileptic Drug because I should be able to control my Epilepsy myself with my mind! :mad: Er, HELLO! I am one of the strongest people when it comes to mind and spirit and I am very sorry, but I am UNABLE to control my Epilepsy without my Epilim (Depakene in the U.S.A. and Convulex in the U.K.)! :mad:

Keep well! :)

Saysusie
01-28-2007, 09:57 PM
I bet he has no chronic disease or debilitating illness that he is dealing with does he??? I am with you 100% about people giving us advise on how to deal with our illness when they #1) Know nothing about our illness and #2) know nothing about what it is like to live with chronic and/or debilitating diseases!!
I always imagine smashing a pumpkin in their face and it makes me smile. They then ask me what I'm smiling about and I just say sweetly, "nothing" and walk away. Imaginary vengance can be so sweet sometimes :lol:

Saysusie

littlered
01-29-2007, 11:15 AM
What makes me furious is when my doc tells me,"Oh, triple up on the Prednisone"and "double up on the Neurontin" and he's talking as fast as he can and I'm scribbling notes as fast as I can. Then the next time he asks me, "how much of __________ are you taking?" and gets mad when I have to say, "er, um, wait a minute" because I can't remember and have to look through my notes! Grrrrrrrr! :mad:

littlered
01-29-2007, 11:17 AM
Oh, yeah....and THEN he acts mystified when I have to call in sooner for a refill!!!! I feel like screaming at him, "DON'T YOU REMEMBER? YOU TOLD ME TO DOUBLE?TRIPLE UP!"

Saysusie
01-30-2007, 08:34 AM
Marycain and I had a discussion about the plight of doctors that opened my eyes a bit. I guess I'd have to say that "No", they generally don't remember telling us to double-up and triple-up on our meds.
When you remind your of what he's said, what has been his reaction? Is he contrite or does he still act perturbed? 'Cuz, if he continues to be perturbed and/or arrogant, then I'd have a serious discussion with him at that time!

Saysusie

littlered
01-30-2007, 08:57 AM
Oh, believe you me, we are GOING to have a LONG talk when I see him on Wednesday. (By the way, when I "remind" him, he just kind of shakes hishead and says, "Oh, yes..." and looks embarrassed, then changes the subject.) Among the things we will discuss:
1. Why does he continue to ignore the fact that I have been nauseous FOR THREE WEEKS now and Phenergan is NOT doing the job? (I am going to ask him, "have you ever had stomach flu for a few days? Imagine feeling that way for 3 weeks!") I want something stronger for the nausea, or I want to try a different chemo med.
2. Why does he ignore my urinary symptoms when a Nephrologist would NOT? (In fact, the nurse when she heard my symptoms said, "Oh, you have to come in as soon as we can get you in here."
3. WHY, when I ask for some kind of medicine , do you look at me like I'm some kind of drug addict? YOU KNOW I HAVE LUPUS! who the heck sells OUR KIND of meds on the street? It's silly and insulting.
4. Why do you only write me scrips for 30 days? It is ridiculous for me to have to call the pharmacy every month and hope that you answer their faxes. Some of these meds can NOT be "skipped" while I wait.
5. Why is your staff so anxious to set appointments, but so dismissive and lazy about giving you the messages when I call? (This was HIS excuse for not calling me back.) If you have a problem with your staff, it's YOUR responsibility to correct it. Or, I'll be MORE than happy to talk to them if you haven't got the b-lls to do it yourself.
6. Why, when I mention some of what I have learned on this board, does he look at me and smile like, "silly woman." I may not have a medical degree, but I can darn sure educate myself, and I have!
I've already decided that if I don't get some satisfaction and some CHANGE after our discussion, I absolutely WILL find another doctor. and I will tell him so. After they let me out of the straitjacket he will probably put me in. :lol:

Saysusie
01-31-2007, 09:03 AM
Doctor's are of two minds when it comes to educated patients. On the one hand, they think that it is a good idea for us to be knowledgeable; but on the other hand, they think that we become some sort of hypochondriacs when we learn about our illness (especially if we say that we learned this or that on the internet!). I hate that "smug" look that they give us when we say that we've learned about our illness, our treatments, our symptoms and our medications on the internet. I had a doctor give me that look once and my response was "At least someone is telling me something..you've told me nothing except to take this pill or that pill. Are you going to hold it against me because I want answers that you will not give me? If you don't want me going to the internet, then answer my D!@# questions. Otherwise, do not give me that look when I try to get answers from someone, somewhere!" That made him back up and look at me a bit more seriously.
I doubt very seriously if you will be placed in a straight jacket for standing up for your rights as a patient. All of your questions are valid and deserve answers...demand that he answer each and every one of them! If you are not satisfied, then by all means, find another doctor!! I think that you are 100% within your rights to want to feel better! Why is that such a hard thing for them to understand?? Getting your medications on time is part of that; having medications that work is part of that! You ARE NOT asking for too much...just that they listen to you and help you to feel better!
Please let us know how it goes Littlered!! I wish you the best and do not back down!!

Peace and Blessings
Saysusie

MARYCAIN
01-31-2007, 10:12 AM
I am blessed to have a rheumatologist who is open-minded, flexible and loves educated patients, and who isn't afraid to say I don't know, or I need to look that up. He's also very interested in alternative and complementary therapies, and will research anything I bring up and tell me the straight information, not the AMA party line. So there are great doctors out there - unfortunately it can take some effort and doctor-changing to find them. But any doctor who feels threatened or challenged by a patient who asks questions is a doctor to be avoided if possible, because he has an inflated sense of his own ego, and that kind of doctor is dangerous. Although I think most doctors are genuinely interested in helping - they just let the system get the better of them - there are also doctors out there who buy into the myth of the godlike, infalllible doctor. Run, do not walk, from these doctors as fast as you can!

Although they can be harder to find, I've found that osteopathic physicians are more inclined to look at the patient as a whole person instead of a collection of body parts they can tinker with. So if you do end up looking for a new doctor, you might want to consider looking for an osteopathic physician rather than an allopath. The gynecologist I go to now is an osteopath and she is hands down the best one I've ever had.

Saysusie, I'm still with you on that soapbox - unfortunately I think we need a bigger megaphone to make ourselves heard.

Littlered - you go girl!

littlered
01-31-2007, 09:36 PM
TODAY MY DOCTOR AND i SPENT 30 MINUTES.....He asked, "Kathy how are you?" ANd BOY did I ever tell him. I was not insulting, but insulted. I told him everything I posted I would say here. I looked directly into his eyes, and he did NOT interrupt (something drs. are prone to do as they are in such a damn hurry.) I did NOT raise my voice, but spoke kinda like Clint Eastwood, LOL. And he actually not just "saw" me but HEARD me.
He agreed that it was indeed silly to have 30 day supply on some drugs. He also sympathized and was apologetic about looking at me as "drug seeking." He said, "Hmmm...you have lost 15 lbs in three weeks...are you taking the double prednisone like I asked?" :mad: Wow did I ever go off on HIM! I said," if you read your messages you would understand that I am in constant nausea HELL! DON'T even bother telling me to never take them on an empty subject. I am no idiot who would do that unless directed!" I told him it was unconscionable that he would put me in chemo without effective nausea meds. Then his eyes got wide and I swear he was sweating under his turban!
Then he proceeded t complain about his staff not getting his messages to him. I told him that if he didn't have the b-lls to deal with them, I WOULD
He said, no, i have already made up my mind. The person responsible will be fired on Friday. And I already have a replacement for her.
When I mentioned that I had educated myself in this disease, he sat back and said, "Well, what do you want to try if you just can't take MTX?" I told him, well, let's try Imuran. Or Cellcept. Or even rytuxan as a last resort. HE could not BELIEVE I knew about that drug...he has only studied it two months ago. so I got some respect there.
He looked into my eyes and begged me not to go to another dr., as HE wants the distinct privilege of helping me get my LIFE back. He also told me that he enjoyed me, because most of his patients have given up and just take whatever without care. He said I have a tiger by the tail kind of spirit (whatever that means) and that means as much as any meds do.
He gave me Raglan to take three times a day. (I already feel better.) If I go in on next wed. and I'm not better, he will try compazine.
LET ME SAY THIS: before this board, I never would have had this much know-how about my disease, nor the FIGHT I have chosen. May God deeply and richly bless you ALL! Love, your Kathy

MARYCAIN
01-31-2007, 09:55 PM
You go girl! I am so proud of you! If the reglan doesn't work, ask him to prescribe zofran or kytril, which are specifically intended to treat chemotherapy-induced nausea and work far better than compazine or phenergan. They are expensive but worth the price - and with kytril, you only need a pill a day.

IloveHistory
02-01-2007, 04:24 AM
Good for you, Littlered! :lol:

You really showed him and I'm sure he will treat you very differently and with the respect that you deserve from now on! :)

I hope that the new anti-nausea drugs really help and if they don't, I hope that your doctor finds something that does and A.S.A.P.!

Keep well! :)

littlered
02-01-2007, 08:14 AM
Thanks, y'all. I ate a FULL breakfast and it is staying down! *happy happy joy joy" dance...love, Kathy

Saysusie
02-01-2007, 09:13 AM
Littlered;
Let me say, once again, I AM SOOO PROUD OF YOU!!! Armed with information, educated about your disease, knowing what your rights are, and not afraid to stand up for yourself!! You are our new "Poster Girl".
From now on, he will be asking you what you want to do!!!!

Much Pride and Love
Saysusie

mnjodette
02-01-2007, 07:17 PM
WOW! If she was here, I'd have my granddaughter do one of her cheers for you. You must feel so vindicated! We're all doing a giant cheer for you...can you hear it? It's coming from every corner of the country, Sister! Way to go!!

Bless you!

Jody

bonnie
02-02-2007, 12:50 AM
I know how hard that is. I have been trying to talk to my doctor like that for ages! You will be my inspiration at my next visit.