12 replies to this topic

[luvmybees24]

No one seems to understand so I'm venting to people who do. I was diagnosed in November 2011. Since finding out I'm going to live and the fact I'm not suffering many side effects, people seem to already be tired of me talking about my disease or worrying about it. It's a chronic life-long thing and it seems like I'm supposed to "be over" it already. I'm starting to get more side effects from the Tasigna (bloating, dry skin) and just feel down. I think I need a therapist but no insurance is my problem again. I can't afford the places that accept you on a sliding scale even. I can't afford any money for a therapist. I just feel down and don't want to burn anyone out. I want to scream JUST BE HAPPY YOU DON'T HAVE THIS! Ugh.

[Lori's okay]

HI Laura,

I can sure relate!  For some reason today has been a tougher day for me too!  Sorry you are having a tough time right now, and sorry any of us have this illness!!!

This really is a hard disease for others to understand.....heck, it's hard enough for us to get a handle on!!!  I keep saying it's a two handed disease:  On the one hand, you have Leukemia, on the other hand it's a form for which there's a 'solution'.  On the one hand (there's that phrase I think should be outlawed) all you have to do is take a pill, on the other hand it is WAY more complicated than that........could go on and on like this!!!  I've sort of decided to try to really explain it to the few people I think really can be supportive......and try to keep it simple to the rest.   ANyway, I'm really glad for this forum to find folks who do understand!!

If you're feeling really depressed, and you really can't afford a therapist, I can so recommend a book.  It just about saved me many years ago:  Feeling Good by David Burns.  I think it is poorly titled, makes it sound like fluff.  But this is a seriously helpful book on using cognitive therapy for overcoming depression. 

Hang on, Laura.  I hope tomorrow is a little better for you!

Lori

[lthouse612]

Hello luvmybees24

It's late and I haven't been on here for a bit....  Been dealing with some things myself so I can definitely understand what you're going through.  I'm really not sure what it is with people (especially those you "think" would understand).  Maybe it's that some just "don't get it" and we just have to know this or somehow accept it.  I was dx back in Dec. 06 and I've had my fair share of ups and downs, been to a therapist, taken anti-depressants and now I just recently lost my mother to liver cancer of all things!  Ironically, I have CML and I also have Chronic Hep. B.... I think its some sort of sick joke... I mean, really?!  And to make things even sweeter... I was recently told I need to "move on"...after losing my mother just a few weeks ago.. by someone whom I thought was suppose to be the one to support and understand pain, suffering and loss.  I was then told to get back on meds to make me "feel" better.  I guess what I'm getting at is there are a great many factors that make us feel the way we feel about having CML and having to live with it... but like you've stated... we're the ones (in here) that do understand.  As much as it's a very physical thing to deal with... it's just as much a very mental thing.  Do I look like I have CML... absolutely not!... but, it's because I've learned to hide it well and because I don't want that kind of attention on me.  I feel like its a double edged sword though.  I do keep trying to do the things I've always done..pushing myself all the time....even before my dx...but no one sees me at my worst.  Why would I want them too?  So, because of this... and my appearance... well, it gives me a great disadvantage because of the lack of consideration that is given when I do need help or when I do feel badly... or when things I do around the house take more of an effort for me to do than someone that isn't ill.  It's this lack of consideration in how we not only have to "handle" the CML but also our day to day "normal" living situations that never stop from day to day.  Does this sound familiar to anyone else? 

So, anyway... venting to those that are in the same boat and that do understand is definitely the way to go.  I have actually had situations come up with comparing their very difficult, stressful job to having CML... I could have said ..."lets trade" but bit my tongue.  All in all, I understand everyone has difficulty in their lives... it's just that I feel that having something like CML leaves us with fewer options in dealing with ours.  It's all very frustrating but just remember that we do understand and you can vent anytime.  I hope you find your way in how you can feel better... and try not to let those around you make you feel like this is some simple thing that is just so easy to deal with.. we all know better...  Take care.

Mark

[pamsouth]

ItHouse,  You said it well!!!

I couldn't have said it any better.  My story may be a little different, but the basics are the same.

Just turned 64 years.  Diagnosed BML in 2005.  How do I look WONDERFUL!!!  However the last couple of years we have a lot of family deaths and sickness, I had to put my foot down what I could and could not do.  No one really seems to get it, except my husband and this board.

Thanks for your wonderful Post!

PamSouth

[lala]

Hi......I have to respond to all of you!  We do understand!  We are so lucky to have the meds BUT we sure wish we didn't have the disease!  My life is soooo different from what it was....I can only work 4 hours a day and it is back home to rest.  I rest ALL DAY SATURDAY and most of Sunday.  I go out for two hours on Sunday, that is it!!!!!  My daughter and I run to Target, woohoo!!!!  That is my week!  I have learned to do what I must do to survive!  My best friend comes over on Saturdays.  It takes a long time to really understand the:  I can only do what I can do part of this disease because of the fatigue it brings.  I guess the acceptance part and the learning to do so little has been hard for me.  I get spurts of energy.....but I make no plans because I never know.  I also evaluate if I really want to do something because I know it may set me back a few days, and I don't want to miss work...I LOVE MY JOB!!!!!!  Ssoooo...figure out how to take care of you.  My daughter says no one understands our disease cuz we look good!!!!  .

Give yourself time to settle into a new normal....be kind to yourself.  To Mark and Pam, grief is hard.  My mom and both my brothers died ten years ago...all within a 15 month period, and I still cry for them.  My friends wonder why my eyes fill with tears....really?  Wouldn't yours?  Two years later my platelets were out of control and I was ssssooooooo tired....hhhmmmmm.....stress...stress....stress!  Wishing you all time to settle in....we have many years ahead of us!!! . ~Lala in bbbrrrrrr chill and snowy Chicago

[pamsouth]

Lala,

I went to a therapist sometime ago, as I was on overload and ended up in the ER with high blood pressure.  The therapist said don't put so much on your plate.  My primary doctor, Said I afraid you bit off more then you can handle.  Well lets see after a few months of taking care of my husband, I mean that literally; dressing, bathing and feeding him, running him to multiple doctors.  Thinking I was going to put him in the nursing home. Well I said to my husband you didn't get sick until you starting taking this arthritis medicine ( a generic of mobic) then doctor doubled dose, then added pain med's and other med's until he was so swollen, and couldn't walk without help, hold his head up to eat, dress himself, button his clothes, zip his pants.  None of the other doctors wanted to challenge the primary doctors medicine.  So I took it on myself to wean him off the med's, got the doctor, to order physical therapy.  He is working part time today.  Still has arthritis, but he just deal with it.  Then two death in the family, my son was in the hospital 88 days, 30 days on life support in ICU. Yep I crashed big time.  And my doctor and therapist say, don't put to much on your plate.  Well sometimes life doesn't ask my permission, and we are forced to deal with the deck we were dealt with.  However I have sense recovered.  I think after my trip to the ER and explaining over and over to my family, I just can not take on all of the family issue anymore!  I think maybe they sort of get it.  Especially you would think my oldest daughter would have a little more compassion.  Upon gradating from college she became a RN in the intensive care New born for 10 or 12 years until her 3 rd child was born, who is now 14 years, her husband who is a doctor.  Well less just say my friends have more compassion for me then my daughter.  She thinks it is a cake walk.  After all I am the lucky one with the great drugs.  Well yea better then before Gleevec, but it is far from a walk in the park.

I am trying to make the best use of time.  But they are in little time space.  I just took a 16 hour class in intro to massage therapy, but I had to miss 1 class, sick with cold.  Now I am taking two short classes, and hoping to make it thru.  But I always have to get my rest.  Then there is chronic bone pain and night  sweats to deal with. Then I don't have much time in between classes, to fix meals, shop and do laundry.  I also try to take the short classes as if I get sick or to tired and can't make class I lose my money. I am 64 years old, but my brain is still working.  Would like to go back to school and earn some credit, but I wouldn't dare put out a lot of money, in that I never know if I will be well enough, without getting tired, or stressed, to finish.

Then I get mad at myself because I should be grateful for what I do have.  But it is like living in a mind that says, yes I can do this, but a body that says, only in small increments. Especially on days when I get spurts of energy, I think I can take on the world. But I know better!!

I do not know how much of the fatigue is caused from CML or TKI or old age, or all the above. 

PamSouth

[Lizzybee]

I just read an article this evening that said people with chronic conditions live longer if they write about it.  Writing can be very therapeutic.  I have never been one to keep a journal or diary, but I have a blog about having CML.  It helps me to write out my experience, and reading it helps my friends understand what CML is and what it's like to live with it.  I share my blog posts on my facebook account so that whoever is interested can read, and whoever is bored of hearing about it can ignore. If you don't want to put yourself out there on the internet like that, you could try journaling in a cheap spiral notebook from Walmart.  ((Hugs to you.))

[Susan61]

Hi:  Sorry your feeling like this, and you are still so new at this whole thing also.  I have been on a rollercoaster since 1998 when I was diagnosed with CML.   Everyone thought that because I was on a medication, and was told that  I could live a long life that I should just be happy and get on with life.  It does not work like that, but it does get better at times.

     Right now I think its the world situation that is making us all feel the brunt of dealing with CML.  People are out of work, no insurance, and no light at the end of the tunnel right now.  It does not matter at what stage your at with your CML, its everything else going on around you.

    I did go see a Psychologist years ago, and all she did was talk to me about her Breast Cancer. It was a horrible session, and I would pay her and leave.  I finally said the heck with this.  I could use the money for something else, and decided to just trust God to get me through.  I was on Zoloft, and I threw them in the garbage also.

   Some days are harder than others.  I do not let family or friends get to me anymore.  If you want to scream then scream, you might feel better letting out all the tension.  I actually have lost a lot of friends through the whole process,and decided they were not real friends to begin with.  I have some friends who have stuck by me since day 1.  My family or I should say some of my family I have stopped bothering with.  They could not accept it when they would be having a Barbecue or some affair, and I just did not feel up to it and did not go.  I cannot tolerate hot weather for years now, and just could not go to all these summer get togethers.

     I have a very supportive husband, and he tells me to do what I want to do not to do what everyone else wants me to do.

    Try to slow down and just do what makes you feel good.  If your religious then pray and talk to God each day.

You will find yourself feeling less stressed.  This is your body and your health.

    I hope I helped you, and did not make it worse for sharing what I have been through all these years. You can make it better by doing things your way.

Susan

[pamsouth]

Susan 61,  THANK YOU - THANK YOU - THANK YOU!!

We must have some of the same family.  I use to do all the big dinners and Holiday and such, yep did it for years.  Then when I cut back I think some of the family,  just faded away thinking, I didn't want to participate or who know what they were thinking.

Anyhow I have so.... scaled down the Holidays and entertainment. I do not do all that shopping and running around and baking, all that fudge and cookies and stuff, anymore.  Big crowds now tend to make me nervous or stressed, I don't know life sort of just changed.

In fact If I am entertaining I only have a few people and dinner is simple!!! Sometimes we go out to eat with a few friends then maybe miniature golf a few card games.

This summer I will have maybe a couple of cook out, with a few and it will be SIMPLE!!!

I can't stand on my feet and bake all day long anymore, it hurts my back!

I don't volunteer for all the stuff at church anymore.  I sometimes sing in the choir.  I do an electronic bible study and am presently doing a Made To Crave study at the church and last week did a two hour cooking class. So I am still out there, I just make it short, and only a few things and nothing I can't get out of.

Anyhow point being,  some folks, don't get why I have scaled back my socialization. 

My son was in the hospital 88 days this last summer, I spent as much time at the hospital as I could, I did get others to help.  He is at his home and taking care of himself but still has some health issue.  I remember when he was finally in rehab and on the mend to go home.  He cried and said mom please don't say you have cancer and are getting old, it makes me feel bad.  I said son, I just want to explain I can not take care of you, like I did mom for 3 years before she passed away, I was younger and healthier.  It is not that I don't want to, or I don't love you, I just am not that healthy and being a caretaker is hard and it nearly killed me taking care of my husband last year.  He is getting some help from other family member, now.

I think part of the reason is, like the cardio doctor said "Pam, you look so healthy, you look normal, like nothing is wrong, no body would have a clue that right now your blood pressure is sky high and your heart is irregular or you have CML. You look normal, you don't even look your age"  Meanwhile the nurse was on the run to get the EKG as my blood pressure was all over the place and irregular. Anyhow cardio doc changed my meds and finally got blood pressure and heart back to normal after a few weeks.

I am so glad that I am not the only one who get it!!

Thanks for sharing,

PamSouth

[pamsouth]

Lizzybee,  I really, really, really wanted to forget about CML and health issue, but have had to turn my sails as the winds have shifted in a new direction.

I am finding it to be helpful in journaling on the board and in my personal journal. 

Regarding your "blog posts on my facebook account"  I had not thought about that.  I do have facebook, but a blog.  how do you start a facebook blog of your own, from just CML.  That sound interesting?

PamSouth

[Tedsey]

Dear luvmybees24,

I am so sorry you are so sad. It isn't easy. And there will be few who will understand your situation beyond this group. However, there are people "at large" who will understand (I pray one will be your oncologist). Nevertheless, you probably already know who they are or will get better and better at finding them. Being diagnosed with this disease has made me look at my relationships very differently. I may have limited time on Earth or I may grow old. The truth is, no one ever knows how long they will live. Having my mortality suddenly moved from it's comfortable spot in the back to the front burner, I try not to waste the life that I have. I spend as little time as I can with those who are incapable of understanding me and who cannot be sympathetic to my situation or how I feel. Moreover, I try to stay clear of people who have no capacity for empathy. It is becoming clearer and clearer for me who is who. It is extremely sad and disappointing when people you consider close are unable to rise to the occasion. But it is situations like this in life that reveal a person's true nature. Most people are fine with a friend or family member having the flu or even being hospitalized for a gall bladder operation, a broken leg, a heart attack even...(something that will be cured or healed and over and done with).  But a life-threatening, chronic illness is very different, especially if the afflicted is relatively young. It makes some people very uncomfortable.  If not overtly, on a subconscous level.  A lot of this is likely due to how the media and even professionals portray "cancer" (that big evil disease that is really many different diseases).  I suspect for many it is easier to "blame the victim", so to speak. For example, telling someone they are "tired of hearing them complain", "get over it", or they are very "lucky there is a pill for that" is extremely insensitive. Not kind, empathic or loving. I decided I am going to weed these folks out of my life the best I am able. That is my choice. Clearly, life is too short to be around people who are conduits feeding my misery.  Clearly, I should have shut them down way before I was diagnosed.  But I endured because I thought I had time.   Again and luckily, it becomes clearer and clearer who is gold and who is brass. Again it is extremely disappointing and sad when it is family or a significant other.

All in all, the kind of company you choose to keep says a lot about your present ability value yourself and secure your well being. I am finding the road to my true happiness is surrounding myself with people, (maybe even animals), who know me and are able to value who I am. These folks need to be available when you are suffering. My best friends and family are like this. And that has been the greatest gift I ever got. Despite living with this horrible disease, I think I am the happiest I have ever been. In some way, being diagnosed and going through all this crap has made me feel a bit more entitled to happiness, (or at least to demand better treatment by others). Of course I had reason when I was healthy, but I never thought I had a true right. How silly. As my therapist says, there is nothing pathological in enlightened self interest.

I wish you peace, good health, and kind, gentle, caring, compassionate and empathetic people in your life,

Tedsey

[Judy2]

Hi luvmybees24,

I understand what you are going through, as I've said many times before having CML is no picnic. If friends or family, who don't have cancer, don't seen to understand what you are going through ask them how they deal with their chronic cancer. See what they have to say then. I've posted this before but I will say it again. I know a girl who got ovarian cancer 5 years ago, thank goodness she is fine  now. She had a terrible time with her chemo but it is done, over with, she never has to put the harsh medicine into her body again. For us it doesn't end. Regarding seeing a therapist, I don't know where you are getting your treatment but at most hospitals you can see a social worker free of charge, it is sort of a package deal. The social worker is included in your treatment, your insurance is not billed separately for it. Also, having the right onc. makes a huge difference, I just recently switched oncs. and I feel so much better, I am getting a ton of support from my new onc and new hospital. I'm glad you are venting here, continue to do so as often as you need to, we understand and are here for you.

Hugs,

Judy

[Lizzybee]

My blog is on Blogger.  The address is www.myleukemiajourney.blogspot.com.  After I publish my post, there is an option to share on facebook.  When I click that icon, the link to the blog post becomes my status on facebook.