meyati

Hi I hope this finds you in good health or tolerable thank you I'm sorry y for your loss and today's mark in a painful remlinder. I am very scared for my husband I always hate to see and feel anothers pain and suffering I had a lifetime of my own and I don't know if this is a weakness in me because I was always a confrontal person if anyone attacked me or abused me mentally and physically my mother always said I had a chip on my shoulder and dared anyone who meant harm life can be a bxxxch but I always liked a challenge but maybe I'm getting to old well good vibes and peace

There was not meant any hostel feeling from me to you I and not like that yes peace to you also

Hey Meyati,
How you doing? Just wanted to check in with you and tell you that I read your story and it is such an heart wrenching experience that you have been through. I wish you my best.

Meyati, this time Joe said "My, my, my." Happy now? I watched it but found it a bit lacking. That's fine. I love my Joe!

Hi, Meyati! Good Homicide Hunter tonight (as always). I know it's still too early for it tonight in your time zone. Next week's looks really good! Anyway, I'm going to sleep now but I thought I'd say hi.

Hi, Meyati! I noticed that you will be having your scans and doctor visits soon, and I just wanted to wish you all the best. I hope your summer is going well.

My Mac at home - I'm typing this in the office; usually I type on my iPhone when writing here - isn't working, and it's driving me nuts. Which I already am! I do a lot of artwork (drawing) in Photoshop and print the best ones, and I do show them and have them in a flat file where they can be sold. It's almost a physical outlet - well, it IS a physical, as well as psychological, outlet for me - not "therapy," as I don't think of what I do as being therapy, but a real need and a way for me to deal with our world. Well, worse comes to worse, I'll spring for a new Mac. Mine is ancient and secondhand, but thus far she's (her name is Shirley, as in "Don't call me Shirley," from "Airplane") been a great girl and partner to me in my work, and I hate to say goodbye.

Hugs -

Thanks for your understanding! Yeah, mom hurts me whenever she can...has ALWAYS been that way, too. But if she were infertile, I wouldn't be here! Maybe she should have been MUTE! LOL.

I read your response to the "wearing our cancer" question, but I don't really know how to navigate this site yet so I'm saying "hi" here. I want to tell you that my eyes filled up with tears (angry ones) when I read that you're told you "caused" your cancer. That's one of the stupidest things I ever heard. It's also stupid that your rarer form of cancer is dismissed so often.

I have the opposite problem of you, in that I have a rare "invisible" disorder (not cancer) that causes me all sorts of trouble; yet everyone (including doctors) look at me and tell me I'm "fine." In fact, most of my complications from cancer surgery/chemo/port are due to my "invisible" syndrome. I'm glad you found doctors/hospitals you like.

meyati, happy birthday! I probably won't remember next year, but I was able to remember today. I think it's neat that I met you just before your birthday (and if I remembered the day wrong, apologies). May many more good things come to you this year than last year. Hugs.

meyati, I didn't write back sooner because sometimes physically or emotionally I'm out of sorts. In this case, it's difficult to put thoughts/feelings/experience (invisible) into words. I'm used to not being believed (invisible), my problems can be convoluted/strange (invisible), and I have trouble condensing things and making sense. I appreciated what you wrote. I've been trying to make this post shorter, but I must accept I can't & post it as is.

Google “zebra illness” for more info about invisibility. Your IBS sounds horrible. I'm glad you find some relief with the seizure med. Part of my invisibility illness is “delayed gastric emptying” (metamucil can cause projectile vomiting, and I already drink up to 1 gal of water/day). Surgery/chemo drugs slowed me further down. One of your more recent posts questioned the need to fast (since it hurts you) for some scans, and all I know is that I fasted for my CT scan and the amount of fecal matter in me obscured areas. No one seemed to care.

Many doctors won't/can't think outside the box. Incompetence, ineptitude, laziness, overload from witnessing so much suffering. I try to have compassion, but I eventually also have my “rages."

Here's an excerpt from something I read specifically about the psychiatric impact of my invisible illness, Ehlers Danlos Syndrome (EDS), Hypermobility Type. I felt less alone when I first read it because everything finally made sense (relatively). I'm hoping it might help you, too: “Psychological dysfunction, psychosocial impairment, and emotional problems are common. Specific manifestations may include depression, anxiety, affective disorder, low self-confidence, negative thinking, hopelessness, and desperation. Fatigue and pain exacerbate the psychological dysfunction. Psychological distress exacerbates pain. Fear of pain and/or joint instability [meyati, replace with one of your own invisible problems] may lead to avoidance behavior and exacerbate dysfunction and disability. Affected individuals may feel misunderstood, disbelieved, marginalized, and alone. Resentment, distrust, and hostility may develop between the affected individual/family and the healthcare team (in both directions), adversely affecting the therapeutic relationship.”

EDS is a collagen/soft tissue problem leading to unstable joints, causing muscle knots, arthritis, joint (including vertebrae and clavical) subluxations, debility, etc. It's been a problem for 20 years. Causes early/bad osteoarthritis, my spine is degenerating, my wrists, a vertebrae, knee, or hip, etc. can sublux. I've managed, so far, to self-rehabilitate after each “injury.” A rheumatologist “dry needles” my neck/back knots when my nerves become affected (naproxen & valium also help). A couple of times I moved wrong and my lower body became temporarily paralyzed. Doctors who only care about cancer are causing all sorts of problems for me. I was impressed by your ingenuity in making homemade gauze bandages. I'm creative like that, too, and have worked in the trades since I was young (I work for my boyfriend, though I think I'm done working – the chemo/steroids did a number on my joints, and complications with the port, which is out now, caused problems with some muscles in my arm/chest/neck that may or may not recover) with the help of wrist/thumb braces and the fact that there are certain things I just won't do (I was good enough to get away with this).

My experience with oncology medical staff is pretty bad, too. I already switched from one to another. I find the bullying horrifying, and I try not to think of how they might be torturing others behind closed doors. They don't seem to want to take responsibility for much. I'm also distressed when I ask questions about my treatment/side effects and different doctors contradict each other. I'd like to use your word “nitwits,” it's much nicer than the word I usually use.

Did you turn 73 yet?

@meyati - If I was really "hot" people might have thought I was a hard rock singe! At the time, though, my eyes were watering furiously from the chemo (my vision has definitely suffered) so I assumed I looked frightening, lol.

I don't understand how fed privacy laws put you at risk of not having your medical treatment co-ordinated. I get the job descrimination problem, but one would think it'd be a better idea to not allow potential bosses access to ones medical records. Sounds dangerous, and I'm hoping you don't need to go find a job and can just sign OKs for doctors to share your history. I don't know what ACS is.

I generally don't wear any jewelry except stud earrings because I do (did) construction (you sound like a real cow-girl. I mean that in all the best ways of stereotyping - I'm from a big city & couldn't wait to get out, wished I had been born on a ranch). Bracelets are especially irritating to me, but at this point wearing dog tags (which I would prefer) would just draw everyone's attention to the fact that I have no boobs (I'm working on the vanity thing). I read about the USB devices, but I see the dngers for the hospitals, etc., and wonder what will be done to make it so the information can be shared.

Have a lovely day, meyati. Nice to meet you.

Oh wow, meyati. I am so sad reading about Levi and what ye has gone through in his young life. I am so glad you and your son are there for him. Big hugs to you all.

God Bless you and your Grandson. He is very strong and he has a wonderful Grandma!!

It's meeting n chatting w people like you that enrich my life. I had no idea the difficulties you went through with your doctors. I always knew I've been lucky w my diagnosis and treatment from observing people at my clinic and through stories on here. But your comments re things you didn't know... Really touched me! I am extremely proud of you for being persistent and fighting! Not only fighting the system but for fighting for your rights and most importantly fighting for your life!! I promise you, I won't take my situation for granted if I feel I am I will think of you and your journey!! Best wishes n hugs:)) Ttyl... Lynne

The best thing IF you want extra sweetener is Stevia....Great Studies and it's actually good for you. The Corn Sugar in Juices sold in Super Markets is the worst and most people think the juices are good for you. There is a lot of SLIMY advertising by the greedy bastards that sell phony food.

Hi again, Meyati! Now I have some spare time at work and can use my office computer, rather than my iPhone, to write to you. First, I do hope you are no longer depressed. I know well how that feels.

As you know, I don't feel discouraged about doctors' abilities, though I had one bad experience, as you may remember: the radiologist I was seeing misdiagnosed my breast cancer as "nothing, come back in a year." However, I was very lucky that my GYN at the time was alert enough to question that radiologist's report. As a result, not only did I wait a year, I went immediately for another mammo and learned I had breast cancer. I never liked that radiologist and should have listened to my feelings about her long before I was misdiagnosed.

Meyati, the dream trip sounds, well, dreamy! I might substitute Italy (maybe Florence or you-name-it) for Spain. Or New Zealand, since we're just imagining this. What would you do with your dogs, though? Let's say we bring them! And I can bring my partner! Getting a bit crowded, though.

xoxo -

Carol

meyati your post about Mondays does not allow people to comment. I tried refreshing the page to try posting again and it just won't let me do it.

The Problem with Opinions is that ANYBODY and EVERYBODY can have them and they are SUBJECTIVE and can be wrong. I think we should place MORE emphasis on our Amazing Self Healing Body which makes mistakes sometimes but can usually fix them. We live in a Scan Happy World where they buy the Machines and then MUST PAY FOR THEM. I TOTALLY Understand from time to time or if we have a new pain we would want to find out if it's bad or not BUT I think it's mostly about covering their backsides, paying for the machines and the kickbacks the GP's and the Oncologists get from referrals to from the Radiologist. It's all connected....B

Hi, dear heart! I wanted to check-in cuz I haven't been on here lately. Got busy with life then got "the flu from H=LL". Still coughing like crazy but slowly getting better. I hope you have a wonderful trip to Japan and admire you so much for going. It seems very brave to me. Be gentle with yourself. If you go to one of the Buddhist temples there, would you please light some incense for me and others here? I'd appreciate it so much. HUGS!!

Have a wonderful time on your upcoming trip.

Talk to carool about a delete button. She knows how to wield one.

Thank you for your feedback on my question about sleep. I hope your doctors take your seriously about falling asleep so much, as it could be a medical issue that is treatable. Sounds like it is impacting your life, somewhat. It could be something as simple as your thyroid. Have fun in Japan!

I don't have an advanced directive but we do have a pre paid cremation. My advanced directive MAY have to be a gun....lol Have you ever heard this song called WEED?

https://www.youtube.com/watch?v=YEL7VO48Iow

Hi, I have chosen to go with surgery, I posted a question about it if I am missing any benighted of radiation , do you have any feedback?

Hello Meyati,

Thank you for your comments. I'm very sorry to hear you have a very serious cancer. You are living through what many of us are scared might happen, which makes your comments even more valuable. I can tell you have taken a active role in understanding your options and course of treatment and appreciate it. I know many people that have left everything to their GP and their referrals without question. I would like to follow your progress and seek your comments should I need it.

Very Funny actually but NOT REALLY.

I agree with everything you say. Everybody needs to make up their own mind on everything. BUT even if you do the chemo and radiation and you are NED...it still will help if you eat a very heathy diet SO you can stay healthy. THAT is my main message....JUST GET HEALTHY....thoughts, environment, foods and water...etc.... al lot there. Some people move out to the country where the air is fresh....some get rid of jobs or spouses they hate....lol....and some grow their foods in the backyards and others actually change professions to help others....Life is a Teacher and a Journey and we make tweaks along the way SO....that's my story. ALWAYS Listen to others AND that little voice in your head that is from GOD>

That diet is Great....I don't say everybody should be doing this or that I just share studies and then people can make up their own minds. I don't expect to be saved from my cancer either BUT the began diet just appealed to me on a gut level. I LOVE God and believe that we are NOT carnivorous by nature or design and that we are best suited to a plant based diet whether we have an illness or not. There is NOTHING IN flesh foods that are live giving and our cells are waiting for living cells everyday. SO....you are doing great and don't' second guess yourself. Do what you will do and that's the best for you. B

LOL....I don't go to any meetings anywhere and very rarely leave my house. I WILL end my life if and when it gets bad and will use a pistol....haven't bought it yet though as I don't want to freak out my wife with the credit card bill. BUT When the time comes I'll leave her a note and just do it on the way home from the Gun Shop. I think that is the Most loving thing I can do for her and me....No suffering and hospital for me.

I make a lot of waves on facebook and other sites with my rants against Big Pharma and the Cancer Industry and LOVE IT. It's very hard for most people to be ABLE to believe what is really going on. SO....I'm just doing the best I can....lymph nodes went down in my groin and up in my neck....lol Who knows what is going on but I still feel Great. Working on a NEW Song called I'M GRATEFUL...and it's about how I feel most days...glad for the amazing opportunity of my 69 years and what is coming next ....who knows....I read an amazing Book called The Urantia Book and it has changed my life....it's on line for free and Urantia means planet Earth. Check it out and start with the last section first.
Barry

5% chance ... a 30 to 45% chance... takes 2 to 4 years.

If you want to play odds and keep them small, you can greatly reduce them by taking really good care of yourself. Food, activity, spirit .. isn't that pretty much what we are?

I had some crappy after effects from the cancer "treats". Those were difficult enough with which to deal. It doesn't enter my mind any more. No room what with the side effects, lol. But I just got a break from one of them which makes me less of a thrall to the other.

I don't wanna get all detailed but I understand the fear and the doubt.Baby steps. You just have to take one step and keep your balance and repeat until you are steady and then go forward.

Hugz.