Bottle o Tamoxifen
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Well, hope I don't offend anyone with this one. Forgive me if I do...just my humble opinion (and a little more opinionated due to my horrible past personal experience with an antidepressent).
But I don't look at Effexor as something like "tylenol" or "alleve". However, I understand where you are coming from with that but it is an anti depressent that affects brain chemicals that can affect the way you feel in a bad way (and a good way too of course obviously). So I would definitely not take it is as lightly as I would a OTC pain pill. Just like T with all of it's SE.... it's a pill I take to keep cancer away but I don't think any one of us take it lightly as we would taking a tylenol for a headache,etc. I can understand why there would be hesitation to take another pill of this type also. Just my take on it. 
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Sweetie2040 I just started my ninth month on tamox and I have to say for the 1st 5-6 months I was a little foggy, but nothing really bad, but my gosh as of lately I feel so STUPID!!!!! You nailed it, I will be right in the middle of a conversation and I go blank....and people have to tell me where I left off....word retrieval is horrible as well. I just turned 45 in Nov and I am wondering is this an age thing or this little white pill I am on. So I guess I would have to say you are not alone......0
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Girls, I am a stuck record, but I'm trumpeting my love of Glycine as a solution to: sleeplessness/anxiety/fogginess/forgetfulness. I started on it 2 months ago, 3 -500mg capsules before bed. My Naturopathic Oncologist added it to my day for it's cancer killing properties but the side effects are to help with sleep and anxiety. Well I didn't think much about it, just shoved them in my yap, but from day one, I slept 7-8 solid hours a night. The itchy, creepy anxiety I'd been feeling was also gone from day one. Now after a little over two months, I noticed this week that my foggy head is gone. Before I could not find the words I wanted to say, was foggy and unable to focus on complex problems pretty much all of the time. I chalked it up to 2 surgeries in 10 days, was told that too much general anesthesia is hard on a person. Well, I have noticed this past week, that my thinking is sharp again, the words have come back to me, I don't struggle with conversations. I accomplished more this week than I did the entire month prior because I can focus and concentrate again. Before it seemed like I would be talking and all of a sudden would find myself at a dead-end, unable to say what I wanted to express. Really frustrating and worrisome. Not anymore, it's gone. You can get a bottle for under $20 on Amazon, Thorne Research is the brand and is the same that they sell at the pharmacy at my Naturopath's office. Good luck and God Bless all of you real good. Hugs.
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Chevyboy: I'm with you about being tired of the snow! That is the worst SE I have right now of Tamox.....anxiety about the snow and driving or being out of the house out in it even if someone else is driving! The anxiety is almost making me think about about Effexor again.
Jo: I'm jealous of your weather! Makes me think about moving back to Texas sometimes!
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Eastcoastgirl - No offence taken,
I knew when I wrote my post some might think I was equating Tylenol or Advil to Effexor. I am not and I do understand the chemical effects on the brain using antidepressants. It is good to keep in mind that any clinical (chemical) imbalance is just that and a drug that corrects that chemical imbalance is in some small way doing much the same as any drug. Having a bad experience with anti-depressants is not unusual and I do believe they are very often over prescribed. I have a good bit of experience with depression as my husband has suffered with it off and on all our married life. I do not wish anyone to have to go through it nor the family to watch it when there is help available.
The value of BCO and these many threads is that as we share our experiences we bring a wealth of knowledge which helps us in many ways (decision making one key way) along this crazy path we now follow of BC.
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Losing the train of thought or the words, oh yeah, noticed that within the first few months of starting on tamoxifen. Doesn't seem as bad lately, unless I've just gotten used to it?
As for hot flashes, I've noticed that the absolute worst ones I get are always when I'm shopping, wearing a winter coat, and when I've got lots of things on my arms, hangers of clothes, pocketbook, etc. So of course with all this stuff, I can't remove the coat, and then I roast! And it's like clockwork, they always come on really bad in this situation. Last time I was on line and just dropped everything in a pile and peeled off that coat, had to get relief!
This glycine sounds interesting. I think I will research it a little, sleep is my biggest issue right now.
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Morning gals! Okay, I found this.....
http://www.vitaminstuff.com/amino-acid-glycine.html
Glycine, like Sunshine talks about! I think it's worth a try.... And yes! I'm so glad you are feeling the same "SE" about being focused! It's like I want to say "Thank you" everytime my little brain comes through with something smart! My "re-call" is better, but "focusing" is the big plus!
June....maybe your "fogginess" will get better! I think it IS hard putting all the surgery & treatments behind you...and hopefully you will get your "Mo-jo" back!
And Tinkertude....(I love that name!) I am so far post-menopausal, that I forgot what that even is.
I didn't get cancer until I was 72, a year ago. I think I am soooooo lucky about that. I feel so bad for you younger gals that have to go through this....... See, I'm just thankful every day, that I had an easy time of it. Maybe that is why I am not bothered with all the side effects!!!! That must be it! Except last night, I had to hop out of bed, because my one leg started to cramp, & it would NOT stop! I finally got dressed & sat on the bed & turned the electric blanket on...and after about 1/2 hour, I t sloooowly laid back down & it had stopped "twisting." And that was great, until it started again this morning.... I finally just gave up the night, & got up....
Yes, I got up to about a foot of snow! So I can't go to the Doc's to see about my plugged ear.
But it doesn't matter I guess...it has been this way for 2 months now...a couple more days won't hurt. BCinColorado....Did you say you lived in the Springs? How much snow did you get? It's like sometimes, in this area, we just get DUMPED on! But I don't mind...as long as I don't have to drive this little Chevy Prizm around...It hates snow & ice...Yes, ECT....it's nice reading what you have to say.....And when Lacee went out this morning, I had to shovel a path for her to get out in the front yard, Ha! She is so low-slung, that her little legs couldn't get over the snow! But she will be out in it when it gets light! I think she's worried about the "dark"..... I make little snow-balls & she catches them in her mouth & eats them!
RoseG...that was funny about just dropping the clothes in a heap! THAT is hot! Sometimes I just get warm for no apparent reason, but I just throw off all my clothes & stand there...........
(just kidding)....Ha, ha! THAT would be a sight! Oh well, gotta laugh at something..... xoxoxoxoxo
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Good morning ladies,
and thanks so much for all the tips and tricks :-).
Chevyboy, you are right, I'm probably too impatient and also going through some transition time, knowing I'm almost done with my treatment. I've had hot flushes since I've been on Zoladex shots (I'm 33 so they shot my ovaries down chemically), but they seemed to be getting scarcer lately. Tamox worsened them, but I do hope my body will adjust soon. Good to hear about brain sharpness getting better - I've never been so concentrated as when I was on AC and then Taxotere brought some fogginess into my thinking that I'm eager to get rid of :-).
ECT I'd prefer not taking antidepressants, I hope I'll break the spell with my own means :-)
Sandeeonherown, splitting the dose sounds interesting, will try this out!
Glycine seems interesting to me too, I prefer natural meds when they work!
Big hug to everyone
Magda0 -
Just adding my two cents about the Effexor. I didn't have any real problems with it except some nausea which I worked out by taking it right before I went to bed. I just didn't feel like it helped with the hot flashes enough for me to continue to take it. I took a while to wean myself off and I know you are supposed to be careful with that. I think I will research the Glycine a little more and start taking it as I too need sleep and sometimes the Ambien doesn't even help.
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Here is a good one for you ladies and I think it is strange myself. Before BC I was on Prempro and took mega doses of Vit E for the hot flashes. No Prempro now - caused my BC - but continued the Vit E. For some reason, I have no clue, I stopped the Vit E at the same time I started Tamox. I used to have horrendous hot flashes after Prempro. Been on 10mg Tamox for 5 days and my flashes are now "warm flushes". Barely bothered by them at all. Sure hope this keeps up.
Has this happened to anyone else?
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Good morning - I'm hoping you all can help me calm down. It's been just a couple of months since my mastectomy and I started my tamox a month ago. I got good results on my oncotype dx, I had no node involvement and the cancer was caught early. but I can't seem to get rid of my anxiety. I worry that the cancer is lurking somewhere, just waiting to derail my life again. And every little thing I feel makes me wonder if it's cancer. I have tried altering my diet so that I eat healthier, but found that I had acutally cut too much from my diet and seemed to have lost weight! Lost weight!!! I'm in my late 40's and am on tamox but I have lost weight! It has me really freaked out. I should say that I have always been a thin person and until my middle 40's could eat what I wanted. When I was stressed weight fell off me and I would have a hard time getting it back. But then I hit my mid-40's and had to watch everything I put in my mouth. So I didn't really anticpate losing weight now. My onco told me I would gain weight on tamox. I'm so worried this is a sign that the cancer is somewhere else. Any thoughts?
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Boatergrl, highly unlikely with your stage that you've got mets going on somewhere else and all this anxiety will not help at all in preventing that from happening. Sometimes I can't stop focusing on this whole breast cancer thing either, not so much worried about recurrence, but just so caught up in this website and constant researching about the whole thing. I'm trying to get my mind lately onto other things, like planning an outing into NYC with friends and have joined a hiking club and also a book club at my local library, forcing myself to get engrossed in some good books. I'm also thinking I'd like to find something else to get engrossed in, maybe volunteer work, because getting caught up in something else, is for me, the only way to get my mind off the BC obsession.
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Chevyboy - love the picture of you throwing snowballs to Lacee....
We have had snow like in the olden days here in Tennessee. I'm making soup dailly!Magda, Peg - I'm with you if you don't need the Effexor don't take it by any means. All natural is always the best. Glad your just having warm flashes Jo and that it's going well with the Tamoxifen.
Boatergirl - Your weight loss is probably related to your eating well and your metabolism. I think we all have anxiety from time to time re: cancer returning - but I did notice more of it when I first started taking Tamoxifen then it subsided. Hope that's your case too.
Rose - Thx for sharing the things you do to help keep your mind at rest. I'm already on the look out for spring so I can get out and get walking again. The other day I bought a happy meal at McD's and they asked if it was for a girl or boy. I said girl - I never buy happy meals but it's all I wanted, and I rarely eat a McD's - in the kiddie box I got a little white bunny - pink nose, floppy ears and even a tail. He had Velcro on his front paws so I put him on the gear shift in my car to remind me "spring will be here soon". Hey, we gotta do what we gotta do!!!!! Right ladies?
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boatergrl -
I can only speak from my own experience, but I think what you're feeling is kind of typical. It took me a couple of months after diagnosis, surgery and getting all the test results before I finally stopped being so paranoid about every little thing (ache, pain, etc.) I also lost a good amount of weight mostly from the stress and then a few more pounds which I attribute to trying to eat real healthy real fast. We seem to be similar age, diagnosis and treatment. While I'm always somewhat nervous about the breast cancer, the constant fear has gotten much better with time. I've kind of adopted an attitude of unless someone tells me otherwise, I'm just going to assume I'm fine and for the large part, life is pretty much back to normal. I figure if the cancer is to come back at some point and rob me of time, I might as well enjoy the time now while I'm feeling well as much as I can...
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sweetie---I have short term memory issues like you described, but I'm not convinced it is from the tamox I took (5 years) or the evista I take now. I say this because I didn't have any problems with memory on tamox, until I had to have ovaries removed (ruptured). So I think it's more likely from the depletion of estrogen from my oopherectomy. (tamox doesn't decrease estrogen production, just blocks the receptors in the breast tissue). Estrogen helps brain function and memory.
Anne
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I attribute my short term memory issues to old age.
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Hi All!
I thought I'd chime in on some of the SEs and my current status.
I've been on Tamoxifen for almost 9 months now. In that time I've taken a week off prior to my TE surgery and will again take another week off later this month for my exchange surgery.
The hot flashes were terrible for the first few months but then it stopped and when I stopped and restarted the Tamoxifen they didn't come back. Not sure how much of that was Tamoxifen or chemo induced meno.
The wandering mind or memory problems I have had for years so I can't really blame that on Tamoxifen (or chemo for that matter!). I'm only 48 but have been teased for years that for me "each day is a new day" - I don't hold grudges and often forget that I'm fighting or was mad at someone the day before!
My vision seems to be getting worse but that could be old age as well and now I cannot read a thing without my readers! So as long as I keep a pair handy I can't complain.
The middle of night leg cramps I have on occasion but I read on here that if you eat a banana a day it helps. I have to agree with that and try to keep a supply of bananas in the house for just that reason.
I have not experienced any vag dryness - associated with my chemo induced meno or by taking Tamoxifen - and actually find that I have the opposite problem.
I did gain weight while going through TX but lately have changed my diet and included more fibre and vegs and have lost a few pounds (certainly nothing to write home about but I can zip up my pants without wrestling with them).
The only bothersome issue I seem to have is constant sinus pressure/congestion. I wake up every morning with one or the other nasal passage clogged, my ears pop constantly and I have pain across my face. I've tried various decongestants, anti-histamines, nasonex, and other sinus medications without any prolonged relief. I'm not sick or ill feeling other than the sinus...
I'm not sure if that is Tamoxifen related or not but it seems that all of my bodily fluids have increased so I'm suspecting that this is just another SE. Anyone else have this?
I'll know for sure when I stop the Tamoxifen later this month (pre-surg).
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My Onc told me a SE to expect was vaginal discharge. Ick. Not looking forward to that.
I'm curious about something I seem to keep reading over and over here. It seems that people who have started T and have had bothersome SE and then stopped T to restart at a later time, that those SE are now gone or lessened. (sorry, long run on sentance!) I wonder what is up with this?? And I wonder if it has anything to do with below:
My Onc also said she has heard of people who take a "break" from T, such as a month (not a week for surgery but a true break) off here or there. She said the doctors on the BC board here and herself included are concerned that this may not be a great idea. They think it may make our bodies become more "resistant" to the T. Something like that anyway. Anyone others dr's have this thought also?
And, I have my script for T but have not started yet. I go to my Gyn on Thurs so was waiting until after that. However, I would really like to wait until after my exchange surgery on Mar 4th. Thoughts???? Anyone? I know no one can tell me absolutes but I just wonder (scared) what harm I may be doing to my body by waiting 7 more weeks to start. BMX on Oct 4th... so that makes it 5 months with nothing. (had low onc score and so no chemo and no radiation)
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Interesting how for me one side effect gets replaced by another. The first week, I was up all night, now I sleep like a baby but the past few days it's been vag dryness, BIG time. Not to be too graphic but going to the bathroom is a bit challenging. Hopefully this will go away like the up-all-night side effect.
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Marie glad you said something about the sinus thing I am having constant drainage and one ear blocks on and off and one side of my nose clogs... wierd. I wonder if it is related to the TAM
Chevyboy thanks... a friend of mine nicknamed me that she said I was petite but tough like Tinkerbell, I said well cancer IS touch but I am tougher so I was going to get on my Tinkertude and beat it
I do have the memory thing though went to the grocery store twice this weekend with a list in hand and needed BUTTER and it was on the list... well.... finally had my kids remind me to pick some up on the way home from school today lol!!!
keep going ladies,.....
"Courage is being afraid but going on anyway"
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I have a dear friend who has walkedme through this entire process because she went through it at age 37 7.5 years ago...Like many on this site, she said she felt anxiety when she first went on T because she was kind of set free...she did not have any side effects that she noticed and said essentially, she took her medication, didn't talk about it and just got on with her life. She also said that once she went off Tamoxifen, she felt like she was free floating and that this is when she became nervous.... I find this site comforting right now and while I do not have many of the side effects described. She said she felt protected being on Tamoxifen...
I feel the same way...the surgery to remove the cancer and the radiation to eradicate the little buggers hiding in corners (do breasts have corners? you know what I mean) are great but the tamoxifen makes me feel like I am protected for the next 5 years..and at 48, I want all the protection possible for a long life!..
Anyhow, I am still sleep deprived in a big way and plan on trying out the glycine or discussing it with my naturopth. Thanks for the suggestions everyone!!
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Chevyboy: I'm in the Springs. We got about 4" at our house yesterday. Today with the sun out, even though it was so darn cold, some melted. I don't drive in it at all and DH takes me to work and to doc appointments.
boatergirl: I too get bad anxiety since starting Tamox. My onco prescribed Effexor to combat that but I didn't like the way I felt on it....so I'm still anxious.
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I have been on tamoxifen for 10 days and nothing....no hot flashes, no memory issues, no sleep problems. I feel fine. I am worried! Ha! Anyone had the lab drawn to see if you are a good tamoxifen metabolizer. I need this to work or I need to get my ovaries ripped out and go on an AI. Maybe it is just because I am stage IV and have been on chemo for 17 months straight so compared to that idon't notice any side effects??
Funny, everyone is complaining about hot flashes, and I want some! LOL. Maybe I will be regretting that statement soon!
Anyone take a while to get side effects?
Sorry for being a drama queen! :-)
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Morning girls! Man, it's 2.5 degrees out...& yes, BCinColorado, we got at least a foot of snow here at my house in North Denver! Even Lacee doesn't like to stay out in this...just too cold.
For me, I never thought of stopping the Tamoxifen after I started...It took me LONG enough to even take that first pill...
I don't know what makes us so afraid of this! But once I started, I never looked back. I know some women who refuse any kind of further treatment....even radiation, and SURELY not Tamoxifen....I know of one particularly, that would NOT get radiation, or chemo, even with positive nodes. She decided to go to South America to visit a "Dr. John" or someone, for these special healing sessions.
Now she is on chemo, in the fight for her life. She waited 9 months, before going to the Doctor, because she didn't feel good.... She has mets to the bones.
I'm just sayin' that it IS our choice...but for me, I would rather think that I'm not taking any chances of cancer coming back, and if the Tamoxifen helps, then I can put up with a few SE's.
Sandee...that was funny! "Do breasts have corners?"...Ha, ha! I think one of mine does NOW, Ha! After all those Mammograms, since the surgery, even my seroma has flattened out! A couple more Mammograms, (treatments) & it will be just a memory!
Lori...honey, you are NOT a "drama queen"...So many of us get SE's after awhile, but they soon get tired of driving us nuts, so they leave. Then you will get "different" ones! But after a year, I'm getting nothing...just relief that all my tests come back normal!
Man, I'm sitting here, with sweat pants, a hoodie, & a jacket over that! I'm pretty sure I would welcome even a hot flash....
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East Coast - I wish I had an answer for you -- I;d win the Nobel prize for medicine:):) You hit nail on the head. If you get strep throat, they can do another throat culture & tell whether it's gone or not. BC is so frustrating because they can't say anything with any certainty - various treatments, whether cells are still there, if they will come back, or when. I'm sure some women take it for 5 years and never needed it in the first place -- or the reverse, and lots of variations in between. The best you can do is go with your gut and hope someday soon there will be a breakthrough so we will know more.
Lorieg - I had the tamox test (cyp2d6) back in early Nov and showed I was poor metabolizer. Then at San Antonio conference a study came out that showed it was not relevant and that oncs don't need to do the test anymore. (Google cyp2d6 San Antonio and some links should come up). I saw my onc 2 weeks ago and he said the same thing. So here I am. I haven't had any SEs so far, but I'm also post menop and I think that also makes a difference (maybe you are in chemo pause). Many women don't have side effects or minimal ones. Many have some at first and they ease up. And many have big side effects. It's just another one of those unknowns. Hope it's working for all of us!!!
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Thanks, ladies! I was not aware of the recent study out of San Antonion so I will check it out. Thanks!
Lori
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First week down on Tamoxifen and so far so good. No side effects to speak of. Hot flashes are almost nonexistent and I hope it stays that way. Sleeping really good past couple of nights. Have an RX for Effexor but am not going to start is yet - will see what happens.
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I also was originally prescribed Tamoxifen for 5 years. Then with menopause labs coming back showing definite post-menopause since taxol (10/2006), being on Tamox since 2/2007, onco switched me to Aromasin (AI) 9/2010. Had no periods, total hot flashes/night sweats/weight gain since that first taxol in Oct. 2006 *BAM*, end of periods. 12/24/10, NO hot flashes...first day in over 4+ years...period starts 12/25/10. Onco says STOP the Aromasin, go see gyn. specialist (tomorrow). I feel I should've probably been ON the Tamoxifen for 5 years, THEN the AI, as I was chemo-induced into menopause, was totally PRE before 10/2006 (periods very regular at age 47). I see one other person had the same effect, off tamox early, onto an AI and period started. I am confused as there's not much info, but my tumor was of course EST+...now got estrogen flowing again. NO hot flashes to speak of (sure that's nice, but I do think it shows estrogen is weaker)...so guess we'll see. Gyn tomorrow, Onco next week and full blood workup also at onco's (port still implanted--love it, hope it lasts forever for labs).
I'm thinking this is a GOOD case for PRE-menopausal women before chemo-induced menopause to stay on Tamoxifen for the full 5 years? I'm not even 4 years out of treatments yet, it worries me to be OFF any anti-cancer drug now since 12/27/10 (per onco's orders). Guess we'll see.
BEST to all of you newbie-tamoxifen-ers~! EVERYone is different...everyBODY is different. ~juli
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Good Morning All! A dear friend sent me this to start my day off and, forgive the length but, it is awesome for everyone, especially us. Goals for 2011:
Health:
1. Drink plenty of water.
2. Eat breakfast like a king, lunch like a prince and dinner like a beggar.
3. Eat more foods that grow on trees and plants and eat less food that is manufactured in plants.
4. Live with the 3 E's -- Energy, Enthusiasm and Empathy.
5. Make time to pray.
6. Play more games.
7. Read more books than you did in 2010.
8. Sit in silence for at least 10 minutes each day.
9. Sleep for 7 hours.
10. Take a 10-30 minutes walk daily. And while you walk, smile.
Personality:
11. Don't compare your life to others. You have no idea what their journey is all about.
12. Don't have negative thoughts or things you cannot control. Instead invest your energy in the positive present moment.
13. Don't over do. Keep your limits.
14. Don't take yourself so seriously. No one else does.
15. Don't waste your precious energy on gossip.
16. Dream more while you are awake.
17. Envy is a waste of time. You already have all you need.
18. Forget issues of the past. Don't remind your partner with His/her mistakes of the past. That will ruin your present happiness.
19. Life is too short to waste time hating anyone. Don't hate others.
20. Make peace with your past so it won't spoil the present.
21. No one is in charge of your happiness except you.
22. Realize that life is a school and you are here to learn. Problems are simply part of the curriculum that appear and fade away like algebra class but the lessons you learn will last a lifetime.
23. Smile and laugh more.
24. You don't have to win every argument. Agree to disagree...
Society:
25. Call your family often.
26. Each day give something good to others.
27. Forgive everyone for everything.
28. Spend time with/people over the age of 70 & under the age of 6.
29. Try to make at least three people smile each day.
30. What other people think of you is none of your business.
31. Your job won't take care of you when you are sick. Your friends will. Stay in touch.
Life:
32. Do the right thing!
33. Get rid of anything that isn't useful, beautiful or joyful.
34. GOD heals everything.
35. However good or bad a situation is, it will change.
36. No matter how you feel, get up, dress up and show up.
37. The best is yet to come.
38. When you awake alive in the morning, thank GOD for it.
39. Your Inner most is always happy. So, be happy.
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