Ha! You might mention to this person that since "truth is that which never changes," if she/he/they has/have any questions, you'll be more than happy to answer them. Make a date!
We here all know how we are striving to understand our own situations, re CML, and also that we know we are not the CML — we are each our own self/Self, regardless — so we can't even imagine what others make of our life with CML. Must be very difficult for them to understand, and for them to deal with the unknown in relation to you/us/them.
All the best as you deal with this. You are not at all alone in this, so sharing your experiences with it can be a service to others. Thanks!
After 5 years with cml, and tki's (which I am so grateful for) some of us get hit with every side-effect known,and are coming up with new ones all the time. If I was Adolph Hitler I would order every adult to take 600mg of Gleevac everyday for 2 weeks and no toilet paper,prepH,or immodium! HEE HEE. I'm just finally feeling better after 3 weeks of mouth sores. Billie
Glad to hear that you're feeling better, Billie. You always sound like you've got a handle on whatever you're dealt. Well done!
I know debilitating, and annoying, side effects: I'm certainly not belittling them (can't!).
My wish was to send some bliss to Pam, that's all. If I got it wrong . . . that's just me.
Well that sucks. Really?? They really wrote that? I cannot even imagine saying that to ANYONE. Much less a family member who has leukemia. I am sorry this has happened to you. I have no idea what I would say to anyone that said that to me.
I guess the silver lining in this disease is learning what is important in life. and I would say that that person is so wrapped up in herself and trying to hurt others to make her feel superior, that she would no longer have a place in my life. I don't suffer fools at all, didn't before dx and certainly even less so after.
You have my permission to stick your tongue out at them and show them which of your fingers is in the middle of your hand. You should then flounce away, secure in the knowledge that YOU know what is true.
Hope it gets better.
I can't believe that some people,can be so ignorant. Don't let it get to you, we all have those kind of idiots around us. I know the look too. I just ignore it. You cannot dwell on this, you have to get this depression under control. And with depression any little thing and we will become obsessed with it. I know it's so hard not to let it get to you. But depression is a disease also, a horrible one, when I had my bad depressive episodes I looked much worse than I do with cml. But I still had this crazy sense of humor, I can't help it that's who I am, so people doubted I was truly going through a severe depression. If they only knew the horrible feeling inside me and the terrible fears and anxietys. I guess I was supposed to sit on the floor rocking back and forth and crying uncontrollably. Just focus on yourself,and get better for your family!
Over the past few months I have learned quite a bit from my wife. Her close family in the midst of terrible tragedy has chosen to turn on her and single her out for all kinds of things. The comments that have been made to her and the things that have been written to her in emails have been truly awful. She handles it with a grace I never could. She doesn't just blow it off like it doesn't matter, I know how deeply it has wounded her, but she does not respond, she does not fight back. I used to see this as weakness, I would say to her "you're letting them bully you, you need to say something you need to fight back". She would just say "there's no point". I thought she was afraid to fight back, but she's not afraid and she is not weak, she has a strength that is beyond me. I would have responded to every nasty email point by point with fury and to be honest I probably would have escalated to a fist fight by now. In thinking about that outcome I have thought about what the point would have been when it was all over, would I have gained anything, would I really have satisfaction? Perhaps momentarily, but in the end I would not have gained anything, I would not have "won". That is when I realized my wife was right, there is no point in letting ourselves get dragged down by people who are so negative, mean, and hateful. Sure in your situation I would want to come up with some witty response about how I am sorry this individual and her associates lack the brain capacity to understand the complexities of a chronic illness. I would remind them that I understand it is hard to learn about this stuff, because they hide the information in books. I might even show some copies of my labs or bring a video camera with me to my next doctor appointment and post it to YouTube. Maybe just send a link to a video of someone getting a BMT and a caption that says, "I've had a couple of these, how about you?" But at the end of the day what would we have gained? These people would still lack the capacity to understand because they are the type of people who need to make it about them and their feelings. They cannot understand or empathize, and now that they have shown who they truly are the question to ask is if there is any benefit to having them in our lives. In our case it has been very hard because we were a close unit. We kept thinking how terrible this was going to be for our children now that their aunts weren't going to be in their lives. Then we questioned - do we really want people in their lives who think, act, and behave this way. The answer is no. It is a loss and it sucks, but when all is said and done we will be better off without these people in our lives and so will you. So as much as it may seem like the short term satisfaction from telling them off would make you feel better - I think you have the right idea like my wife, that it's just not worth it and get back to focusing on things that matter.
It is only through dealing with situations like this that we learn how to gain the strength to truly be happy.
All the best.....
Pam, I think you deserve a round of applause. To have reached your age without losing the capacity to be amazed at someone being an idiot is quite an achievement. You put the rest of us cynics to shame.
Given that your relative is that dopey, maybe they thought the reason you were 'in quarantine' was that you were contagious!
I am sorry you are going through this and though it's difficult to cut family and close friends off from our lives we do have to sometimes realize we can still love people that we just cannot associate with any longer. It doesn't make us a bad person but rather someone that sees it just doesn't work for either side to be together any longer. Having said that I have to add that all of this does not mean that once the anger is gone we cannot still care about those individuals but from afar. I agree with Lucky's wife, harsh words back never solve anything and they certainly don't make us a winner in the end. In the end it is we who have live with ourselves and what we have said or not said. Anger is a negative thing and we are already dealing with TKI's and this disease so I pray you can let things go and move on Pam. Big Hugs, Skittles
Thanks everyone! At first I was shocked, then hurt, a bit of amazement, and then today is acceptance. In the fashion of today's youth (mid 30's she is) I have been unfriended and blocked from seeing her on social chat programs. I hope this gives her some satisfaction. I did send a reply and although it was not mean, it wasn't all that friendly either. I stated I respect her decision and she would not hear from me again.
It is hard for others to understand our disease, many times we don't understand all that is happening. Although this person has not laid eyes upon me for many months, I believe she would be surprised at how the CML has affected my appearance, it can't all be turning 50, that is just progression and gravity. I am calmer today, and I am resigned, but there are two young daughters/great neices who will be told they are not important and that hurts. Life isn't fair, even for them, selfishness reigns supreme. I can do nothing about this situation but take Lucky's wife's along with all of your advice, it is not worth the hassle or the bother. I read the Spoon story the other day that was posted on here, I do not have enough spoons to fight, argue, or deal with negative, I barely have enough some days to do what I have to do. Cut the losses and move forward I do not have the time or energy (or spoons). Thanks again for all the positive responses, you all have no idea how much I appreciate them.
>>there are two young daughters/great neices who will be told they are not important and that hurts.<<
I have a similar situation, and it truly does hurt and it is so....... unfair. Not only to you but to the young daughters/great nieces.
Last year when my son was in ICU, I got the opportunity to councel with some very wise employee's. I had a chat with the liaison, the person, that facilitates, when you transport from their facility to anther facility. She had two daughters, and one of them had a young child, her grandchild. She said she and her daughter (with the grand child) did not get a long. She would say to her daughter “because we don’t get along or agree” are you going to stop me from seeing my grandchild, is this going to interfere with my relations to my grandchild. She was blessed in that her daughter would always say "no mom," I will not let it become between you and the child. The lady was maybe in her fifties and said "it so unfair to cut grandparent or relative out of a relationship with their grand children/nephew/nieces, etc. or to deny the child of the relationship. She also said what does that teach the children. How will they learn to forgive and get along. It is not the child’s quarrel it is the adults. Even though we may not see it that way!! That is unless maybe this person has a bad criminal record or is of a violent nature. Perhaps an extreme mental case, but most mental illnesses are very misunderstood and treatable. I use to do volunteer work for NAMI, after I retired. NAMI is National Alliance of Mental Illness.
Perhaps you could still send cards, for at least awhile, maybe they will not get them, but maybe some day you will get the opportunity to say, I sent you cards and always loved you!! Perhaps someday when they are adults you will get another an opportunity to have a relationship with them, who knows, what lays ahead. Sometimes things have a way of turning around. Don’t count your losses yet!!
Prayers, I often remember how God gave Job back 10 times what he had loss. Don’t forget the story of Jospeh and many others. What some meant for harm, God means for your Good!! We sometimes don’t see the end. Life has many twist and turns. Hang In there!
Thanks for the reply, what's up with you, I kept wanting to get on here and ask how you are, and I have been overwhelmed these past days. I thought of sending, but she tosses anything her father sends and does it gleefully, I have witnessed the elation in her voice. There comes a time when there is nothing more one can do. A wise man once told me if there is a conflict and you honestly feel you have done everything you can to repair the conflict but the other person is not agreeable, it no longer is your problem, it becomes theirs. I think that is where I am now. This entire situation has made me almost physically ill, stress really kicks my arse these days. I have to move forward, and not look back. As you said, at some time I will hopefully have an opportunity to share the choice was not my own, but I cannot dwell on that fact, it will not change what has happened.
I hope you are feeling better, and things have calmed in your life also.
Thanks for writing,
Pam. . .
To lighten the mood a bit. . here's an e-mail that I got from a friend today. I'll try to recap the series of e-mails and make it short.
We have friends moving from Kansas to CO and they sent out a group e-mail letting people know that they could use some help unloading this evening, and offered FREE BEER to anyone who could help. My husband (who loves his beer) responded that he would sell his first child for a beer. I responded by saying I didn't realize that he had a first child and if he did how much would he sell it for. . .hopefully enough to buy my Ducati. Another friend responded and then said that since she was e-mailing from work, she probably shouldn't be talking about selling children or drugs. I realized that she assumed the Ducati was my medication. So I quickly set her straight by letting her know that Ducati was not an expensive medication, but a very expensive (and sexy) motorcycle! Now if I could just take all that money that my insurance company spends on Sprycel I could have any number of Ducatis!! Anyway. . .I got a good chuckle out of the e-mail. Sorry that your relative is an insensitive moron.
Nick didn't tell you his Aunt Billie taught him how to use his epi-pen did he? I never got a practice pen, so I would probably do the same thing as Nick! I get 2 new pens every 2 years and I always give them to Ron to empty them before I throw them away. It never occured to me to see how he discharges them, duh! I also have 2 fire extinguishers in my kitchen and I don't know how to use them. I read the instructions, which I'm not very good at doing. Ron said it's a no brainer, I said do you realize who you're talking to. You should have seen me trying to shoot a snake with my 22 pistol. The snake won. Annie Oakley I'm not. We have a shooting
range not far from us and I'm always asking Ron to take me there, I have 2 handguns and I want to practice shooting them so I am more comfortable with them. I learned how to shoot both of them years ago,but I want to stay familiar with them. For some Reason Ron keeps putting me off. This man spent a year in viet-nam right in the thick of things, with guys who set off grenades and God knows what else when they were bored. But he doesn't want to take me to a shooting range. I'm just going to go myself! I hope they let me in. I'm left handed so it seems like no matter what someone tries to teach me it's always awkward. Especially fishing, and golfing. I tried hunting too, I shot a tree. And killed my shoulder, so I didn't want to play that game anymore. Plus shotguns and rifles gain 5 pounds every 10 minutes. Guess I'll just have to stick to being a lady of leisure.
I hope you're settleing down Lots o Luv Billie
Hi Pam: I have been through it too, and you do not have to prove anything to anyone. You get rid of the relative not the negative. I have mentioned before about situations where people have said some things about the way I should be and what I should be doing. I like what Billie said. I would like them to walk in my shoes for a week, not only with my CML but also all the other things that I deal with on a daily basis.
I am going through something right now with a young relative, and at first I was annoyed. Now I just know how ignornant she is,and the act of false concern for me. Its too long to even mention, but the people who I love and who truly Love me have understood what I go through.
I have gotten more concern and care from friends than I have from family. Please do not get yourself upset, because I found its not worth it. When things like this get to me, I just get my blood pressure up and make myself sick. Then I say for What????
Now you know its not just you also, and that should make you feel better. You know all your friends here certainly know what you have gone through, and what you live with on a daily basis. Its not even just sickness, but just everything else that puts icing on the cake in our daily lives. People like that make me so mad.
I bet a lot of you know people who have never had a sick day in their life, or financial problems. They think we exaggerate how we feel and why we live like we do. I am learning a lot as I get older. How Soon We Get Old, and How Late We Get Smart!!! I heard that somewhere,and I think I quoted it correctly.
Thank you for your reply, and you are right, people think they know what we deal with, when in reality they have no idea. They may read things, or ask people, but there is no clue to how we deal with the CML or as you said, all the other stuff life throws at us. I think it was such a surprise, and it was from someone I thought I could trust, I have even come to the conclusion she is going through a mess also, no matter how great she says her life is, she would not be thinking in such a negative way if it were. I am sorry you are having a difficult situation, false caring is something we do not need or want. I would rather someone tell me they don't really care, then pretend or use the false concern for other motives, as you said remove the person, they are not worth it. I appreciate everyone who responded, I just could not believe what was written, so I kept reading it thinking I made a mistake, if there were any doubt, the responses from the board tell me it was just nasty. She has her demons, I would not want them.
I have a funny for you, well it isn't funny, I was peeved as the devil when he did it but it is funny now. Two weeks ago a regular wasp stung my son on the back and he went into anaphylactic shock, scared the heck out of me, I think you wrote something on that post. He is going to visit an allergist and he now carries an EpiPen everywhere just in case. I have been trying to get him to work with the practice EpiPen, just in case he needs to use the real one, he had no interest. I ran into the store today and the filled EpiPen was sitting in the consol of the car. He picked it up and apparently started messing with it, he set if off while he was looking at the needle end, so he sprayed his entire face with the medicine. He came running in the store, thinking he was going to go blind, he had his glasses on, so none actually went in his eyes. Although he ruined one of our two precious pens, he now does know how to use it and he also knows not to point it at his face when you press the inject button. LOL Sometimes we enjoy the laughter where ever we can get it, even if it is at the expense of your child.
Thanks again Susan appreciate your help.
Your niece is a toxic person and you have enough toxicity in your life without her. Unfortunately, we will have CML for the rest of our lives, we have no control over that, but we do have control over the people we associate with. Remember, we don't have to attend every fight we are invited to. Pammie, it is time to cut ties with your niece and move on. there is no room in our CML lives for people like your niece. Life is short for all of us, it is shorter for some more than others. Know you have your family and friends here and know we all support you.
I will call tomorrow, too exhausted to write much more.
Antilogical. Good point
"As far as your disease, i do not have a medical degree so I am not qualified to speak about it".
I will keep that in mind if see a conversation starting to go south, find something to stop them dead in their tracks, quickly!!
Yea, if on the phone, I could say; oh something on the stove, someone at the door, sorry got an important phone call. Yes something to deferr them. Yep as soon as they trip or stumble, but them off. Don’t need to hear that kind of stuff.
Pam, I am astounded at what some people will say! You are dealing with this very graciously I must say.
I guess our type of leukaemia and the treatment can be a complicated thing to understand, some people simply just don't get it - but to accuse you of lying because of her own lack of understanding (and all the other "qualified" people she confirmed her opinion with - ha, what a joke!) is pretty nasty. Sometimes I get confused about my level of sickness. Am I sick or aren't I? Do I have leukaemia anymore or don't I? Yes, but no, but yes.
You were very sick and needed to be isolated for your own safety, but now your counts have recovered. Why is that so hard to understand? Also, people who have lower counts than ours don't get to live in a quarantine unit
She has two young girls, probably inside just jealous that I was able to hide from the world for a bit, and medically approved, LOL it isn't often we get a doctors excuse to stay away from people. I wasn't going to post the mess on here, but I am really glad I did. If others have a similar problem with family and/or friends, as Susan wrote, they know they are not alone. Our disease is confusing, isn't it? And because it is so weird, we never know how we are going to feel, let alone how we can present ourselves to the outside world. It is hard to see or understand how and what is going for others. I keep going back to the idea if her life was so grand, there would not be so many negative thoughts for anyone or anything, no matter what they are. Life goes on, and although I made some attempts to stop communication there is mail, so if something arrives, I will return to sender unopened. At 30 something (her age) I would have fought till there were no words left, but at nearly 50, it just isn't worth the effort. I have to do some things in life, fighting is not one of them. Thanks for checking in, everyone's support has really helped me work through this situations quite a bit faster than I would have alone.
Have a great day!
Those of us who suffer from CML - or any disease, for that matter - have more incentive to do exhaustive research and get the facts straight than the "casual observer". That said, I still think it's just plain thoughtless for people to be dismissive of what we are going through.
Is rudeness a chronic condition?
Most of what i think has already been said; however, as a 30-something i recognise I had little empathy for those people with serious diseases. I was very A type and didn't have time for illness. Wow, has CML changed my outlook! I have a hell of a lot more compassion for human beings, the type of compassion and maturity that might not have developed until much later in life. The lady in question likely has not had to overcome a significant difficulty to be able to understand the challenges people face in every day life. Over time and as she sees more adversity among her peer group (and maybe even herself) will she come to realize the error of her ways. Or maybe she won't, as some people can simply be mean until their final day. Some people decide to invest so much of their time interfering in others' lives because they wish to feel an elevated sense of importance or superiority in their own life - without the compassion gained through adversity this will likely continue.
The whole situation reminds me of a quote by Elisabeth Kubler-Ross: "The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen"
I truly hope the lady in question one day has the maturity and compassion to look back and realize the error of her ways.