STEAM ROOM FOR ANGER
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Marijen, that is a good tactic.
Runor, I am mad all over again for you too.
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they ask about meds and allergies because its critical not to be any mistakes, now or from before. I wouldnt say look at your computer for thete could be an error there or something missing. Miistakes and computer glitches happen.
Write a list and when they ask, give it to them. Also not a bad idea to have it in case you are taken to a new facility in an emergency say if you are vacationing..
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Chicagoan so sorry to hear about your mom. Good luck with an appeal. That is crazy they think you can go back to work.
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I keep an updated list of meds and allergies in my email as a draft. Before a doctor's appointment I check and date it and then print it out to give to them. When I get to that spot in the paperwork I write See Attached List.
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so I'm sorry about the following rant but boy .... you will under my frustration better than any body and for that I thank you ..so quick potted history so readers understand my exasperation ... may 2015 both ducal and lobular invasive breast cancer ... had bmx chemo and am doing my time on AIS just starting year three ... side effects from chemo ... non resolving painful peripheral neuropathy of both feet and right hand .... and horrendous chemo brain forgetfulness etc ... pretty average 2016 ending with removal of expanders and placement of implants in nov 2016 .. feb last yr(2017) went to beloved chemo nurse for port flush before 24 hr flight to visit relatives ... had been treated for asthma by pcp .. chemo nurse is like Judi you are real sick You are not leaving here without immediate ed check up ... result massive blood clots both lungs! .. month in hospital ... onc ordered further tests on discharge as markers up ... Unknown lesion on r kidney ... everyone said prob benign I insisted on partial nephrectomy as biopsy not offered or possible apparently .....came back as clear cell renal carcinoma ... August bought type two diabetes ... September unremitting back pain showed three discs above a previous fusion pressing on my spine ... October was the best one ... admitted to hospital with chest pain ... no blood clots on lungs thank goodness ... atrial fibrillation with RVR with fluid on both lungs ... echo showed ventricular dysfunction .. another admission two weeks later ... chest pain .... whilst in hosp night time observation showed oxygen levels dipping too low so off for sleep studies ... get those results in feb .. chest pain last Friday doesn't go off so sat eve went to ed .. admitted no blood clots heart attacks etc ... when i ask what is it .... don't know your fine to go home ... asked to talk to main cardiologist who felt I was being too anxious about things and wasn't I i on meds for anxiety .... aaaaaargh I wanted to scream !!! Number one after the years I have had i was advocating for my own health , two the antidepressants are to treat chemotherapy induced peripheral neuropathy pains .... I think blood pressure pills might need to be added soon ! Thoughts ?
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The majority of dDocs are so egotistical and heartless sometimes and clueless! Think you are a pain if something is wrong and it is anxiety. I personally know when it is anxiety from meds. Do I want more pills??? NOOOOOO!!!!! That is their answer to everything! Make you a zombie and then you will shut up and quit bothering them.
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bcincolorado
oh you made me laugh out loud ...thank you ...I had just had that conversation with my mum ...do I want more meds .......Nooooooooooo want to cut back on them not add to them ... Wonderful that I am here in Australia and I have a "sister" in America that I have never met that gets it straightaway when family and friends just look at me like I'm growing a second head worried that I will the labelled a complainer or worse an attentionseeker ....... I feel that my future part time work will involve patient advocacy because it is our life and our health we are trying to fight for
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Yoxter, so sorry you're dealing with all of this on top of BC & chemo SEs (not to mention insensitive doctors!). I hope you have friends or family that you can lean on during this rough time. On a positive note, my younger brother has been living with clear cell renal carcinoma for more than 11 years & is doing well. Keep fighting, continue advocating for yourself & keep coming here. We're in your corner!
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Yoxter what a wonderful idea to do patient advocacy. I know I am the "medical expert" at my office since between my cancer and my husband's transplant I know what too much medical stuff for someone who never went to medical school! They ask me insurance questions and time off questions all the time. I'm no expert by a long shot but at least know how to navigate through the system and manage all those medical bills.
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sometimes the duct tape, the treadmill, the attivan, the thankful prayers, the healing, the optimism doesn't cut it. Some times a decent fight, threat (to do what...I dont know), sometimes a good cry doesnt fix it all and hit the reset button, thats broken.
I'm not the mom I want to be, but I'm making the tough decisions this week to start taking my 8 yr old to my bi yearly zometa infusions. Its time he sees, not be afraid, no mystery shrouding or protecting him from what I do to fight to stay here to be with him. There is no guilt, no room for ignorance. No causes for panic, but no denying he's been pretty sheltered from special needs patients and people....that I go to these appointments and come home. Some moms of 2 yr olds diagnosed do live another 6+ yrs. I dont want to feel guilty anymore. I'm doing well and I want to open my childs eyes to the amazing people and system and yes the medical procedures that are my allies. Knowledge and wisdom is more precious than rubies. It's time to open his eyes and give thanks in a meaningful way. I have hoped to live to see my son grow and mature..I dont think I need to wait til he's an adult to teach some of these lessons. Now, let his eyes be opened in awe off how God works and the medicines of the earth he has made. Amen
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Good tips and ideas on the allergies and prescriptions. Will be better than trying to use my memory which causes more glitches than a computer nowadays.
Yoxter - that is one long horrid list to deal with. I cannot imagine all those weeks in the hospital! ooooo boogers on that doctor - questions is - and did he live? LOL
7of9 - your son is fortunate for what he is to learn. When my granddaughter was 8 I took her with me to faslodex injections. Of course that had to be the time I had a reaction during injection and coughed 20 min. Then had a fever for hours and she took care of me all evening. But I recovered. And she knew more and she has an incling she wants to be an artist and a medical professional of some type.
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I thought this was a funny cartoon I saw. How BC survivors see annoying family members.
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7of9, I was dx with MS when my son was six. I didn't tell him about it until he was 15. I wish had done it sooner. When I told him, I said I waited even longer because I thought he might be angry that I waited at all. He said (I will never forget his words), "I wouldn't want it any other way." Mature for a 15-year-old and I'm not sure what he meant but I hold those words in my heart to this day. Was he accepting what I did, forgiving what I did, telling me not to beat myself up? Telling me this ended up being best for him, too? I don't know. This is a very brave thing for you to do. I was not that brave. The very hardest thing for me to do during this whole cancer mess is telling family and friends about dx, about tx, about se, about progression. Very hard.
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jaycee49, I agree, telling family is the hardest thing. One of our sons lives half way across the country, so we had to tell him about a possible mets situation by Skype. My husband and I are trying to be upbeat, but honest about the possibilities, and our 26 year-old son starts silently weeping. Broke my heart in a million pieces!
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Kids say the best things that help us through life. My friend was teaching her son to drive - he had the wheel on a 4-lane highway. She was a wreck. He said, Don't worry Mom, I get it, none of us wants to hit each other.
Long self absorbed depressive rant.
Poo. I am very sad, depressed and I believe it is true, depression is anger turned inwards. When you know you can probably count the good days you have left to live, the really good ones, and you find that a day or three have been wasted on something you thought was important. Like finally applying for SSDI, finally. I knew I did not have enough credits in the last 10 years. You have to have a total of 5 years worth of credits in the last 10 years. 4 credits can be earned each year, or less, as long as it adds to 20 credits since Jan 2012. Got me. I am two credits short. Though the years since 1994 I have run my own business. 20 to 80 hr weeks, no problem. I did it and loved it. And now I am short on work credits and nothing I can do can catch me up.
I was never worried much about retirement. I always figured I would work until I died, I just didn't plan to stop. And when Hubby retired I figured I would get a part-time job for somewhere like a hospital or department store in phone customer service. HaHA - I got cancer instead. And then I couldn't talk and then I couldn't type, though that is better now, not the talking but the typing is.
It's my own fault, I was moving too fast to check on important hings like am I earning enough credits for disability should I ever need it. I just kept spinning and working. The tax preparers followed the course of the one who had taken over back in 1998. And that means my joint return w Hubby did not have MY federal taxes taken out. I didn't know. Then one day maybe in 2008 I noticed something being off and talked to my friend and she reassured me that by the time I could draw SS and Hubby had passed on, that the half of his SS would be more than my full amount anyway. But we did not think about the disability part I might need. This is what financial advisors are for.
I am angry about this, yes. What if I had not worked at all. If I was a stay at home mom and taking care of my family, yard, garden, house, sharing my energy in my community. I would not have federal taxes to pay from what I understand. Working at all that is not considered worth anything to the government. Nothing.
I did all that and ran a business - I paid out thousands and thousands a year in advertising, promotional, printing, mailings, utilities to run the business like computer and phone, fuel and insurances. In my pathetic little world I greased the wheel of the economy, spent locally where I could. And I screwed up. So none of my life counts now as far as helping me to gain any support in a time when I am unable to actually work.
What would I do if we were granted the low sum that SSDI might have been for me? Buy some supplements that I think can help me thrive better than I am now. Take a load off Hubby by getting a housekeeper to come in once a week. Maybe even use some money to take a trip to the U.P. in Michigan, I have never been. I had wanted to get to Prince Edward Island and such but that is too far to fathom actually doing right now.
Monday - spent 5 hours completing online form.
Tuesday super organized my files so today I could easily do all the copying.
Wednesday all the copying and prep to mail.
SS rep called to give me the heads up - not enough work credits in the last 10 years and no way I could catch up. She wanted to make sure I understood that she really wanted to help me but on closer investigation she knew she couldn't. She didn't want me to be blindsided by the denial letters.
Her good news was when I turn 62 in 14 months then I will be able to draw SSDI on my husband's SS.
Well, in November I was told to call hospice.
Her encouragement - and I know she really meant well - since I had an online business I could start it again, put more energy into it so it pays off better than it is which is pretty dismal right now. .
One thing I am glad of - Back in 2012, I was told I had to close my online business and then see if I could get the SSDI. I did not close it. I looked at the situation back in 2012 and decided I would just amp it up instead, I was not a fool and had worked too hard and long to gain the momentum I had. Unfortunately, in spring 2017 the main corporation closed the organic fertilizer division which was my mainstay. The little income I get now is repeat sales from customers who just go online and order the synthetic lubricants for their vehicles. They don't need me, they never call or email, just order. I am fortunate I have that.
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KB870, of course it's half the battle! Don't you know that your rotten attitude GAVE you cancer in the first place? True story. Now you have to repent and have a happy, bouncy, ass-kissing attitude for the rest of your life to make up for your cancer causing attitude of before. Gee whiz, this should be self evident by now.
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Peeves me, as well. My twin sister had the most positive attitude ever. She wouldn’t even talk about dying. I think it was denial, as well, but it worked for her. It will be 10 years in May since she passed away.0
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Runor, I love how you respond. You make me smile. I actually laughed out loud on that one!
If only I had known that my bad attitude was the cause of all my problems. Dang
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I had a great attitude then got mets to the belly. I must be dislectic lol. Not sure I spelled that right. Chemo brain at itsbest
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Runor is definitely one of the people who can make me lol with every posting. I adore you!! ~M~
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i hate the attitude and positive thinking crap people preach. If youre not saying it yourself, don't say it!
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I agree with Micmel's post. Runor, love your style and sense of humor
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First of all , Runor I totally agree with the ladies; you are amazingly talented and creative in your writing and I always look forward to reading your posts.
Yesterday, I was deep in thought while sitting in the dentist waiting room waiting for my hygienist to call me in , ( what I was thinking about I don’t know because I have the memory of a goldfish! ). I must have a really miserable resting bitch face, ( I’ve learnt about this phrase from my daughter. Apparently it’s when a person has a mean look about them without them realizing it!! ). The guy across from me leans over and says , “Hey , let’s see a smile. You know when you smile , the world smiles right back at you” .
For some reason the look in my eyes must have made him uncomfortable because he got up at sat somewhere else!!
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Haha...Indigo - ALL of my life - I've had that happen to me! I *HATE* when people say that!!!! It does NOT make me want to smile - it - makes me want to slap them...haha.
What, also, bugs me. And, there probably aren't very many of us that are bugged by this - but - I hate when people are in your face with "GOOD MOOOOORRRRNNNING!!!!!" UGH - I want to scream - what is so good about it?!?!?!?! I know that's pretty anti-social of me - but - I respond "hi" when I hear "good morning". Because, honestly, a good morning for me - would be - to have never had BC. That's not happening...
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Right, like when I wake up and it's the poster in the room, then I have to figure out how I can get a shower without collapsing, can I wash my hair in the shower or will I have to wait and do that w a chair behind me, or maybe try getting in the tub, nooooooooooooo, bad idea since the fire department would hav to get me out, or maybe a folding chair in the bathtub, no, sounds sloppy and cold. just do it, and so i do and i am exhausted and in pain and now it's time to begin my day. GOOOOOOOOD MMORNINGGGGGGGGG!!!!
But if I just woke up and was in a good mood then maybe cancer wouldn't keep spreading inside me.
I was told this week by a doctor on the phone - research doctor in NC - he said the number one reason cancer spreads is stress. He said, if someone comes to your door and adds stress to your life, don't let them in.
I was polite but my brain was thinking, I have to throw out Hubby??? And the computer. And the television. And the dog. No, not the dog, he is so good.
So what do we have to do? React to stress with positive thoughts? Become saints? Don't let cancer stress us out now it has arrived?
Believe it or not, I am in a pretty good mood. And my face does look mad. I know it does. I was born looking mad. I was one of those grumpy cat-faced looking babies. The picture-taker in elementary school could not coax a smile out of me.
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Scared67 - yup, totally agree. My daughter was with me at the time and she gave me a look that said, “ no mum, slapping the man is not the answer; put your hand down NOW!!
Another annoying one that I have heard is, “ smile; it may never happen". Sorry bud but it already did.
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Indigo - LOL - she knows you too well then?
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Indigo too funny! Attitude--hmmmmmm..........as much as I try sometimes you just have to let go to people who know and understand with no judgments. That's why you all are so great. You get it and all those emotions we have to try to hide from everyone else.
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Annoyed at my husband. My older son uses one of our cars to drive for his job. He has to go to many different locations everyday. His company now wants him to increase the property insurance from 50K to 100K. We talk to insurance company and they suggest we put the car in my son's name and his insurance will go up $320 per year. Ok sounds good, now my husband wants to sell him the car for $5000. We don't need the money and would wind up paying state sales tax 10%, $500. I said sell him the car for $1, my husband said the state would see right through it. What, my father sold me my first for $1 but it was hardly worth anything.
I think my husband is a bozo sometimes.
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Bluebird-DE - Sometimes I look at her and could swear that there is a 40 year old trapped inside of a 17 year old body!!!
bcincolorado - you are right, this forum has definitely been a blessing especially when I need to vent!.
Now I just have to work on my facial expressions. Another gem of wisdom from my lovely daughter is, “ Mum; you had better be careful; that look on your face could curdle milk!”. She makes me laugh out loud!!
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