6 replies to this topic

[dee145]

I have noticed my friends aren't asking me to do things with them like they used to.  And this really hurts!!!  Any one else experience this?  They seem to be dwindling down, maybe a quick phone call once a week or they send me a card thru facebook.  I don't drink since starting Gleevec but I can still go out and drink soda, hell I could be the driver but they don't even ask me.  All my family except my kids are in another state so I can't call my mom when I am feeling really depressed and down.  And now is when I need some one.  My husband just had surgery on Wed. for blockages in both legs, thankfully he only needed 1 stint in left leg and my 15 yr old was just diagnosed with Celiacs Disease.  So now I have to make a big life style change for him and he's a typical teenager wanting pizza and cheeseburgers but can't have the bun or the pizza dough.  I know we will find a way but all the gluten free products are very expensive and we are living on just my husbands income.  My legs won't let me work and I still have these tremors to deal with.  This cold weather is killing my legs, they ache all the time.  I never liked winter any way but I really don't now.  There are no support groups here for CML, it's a combined group.  I want to be able to talk to other people that have the same issues as me not say colon cancer, their issues are different than mine.

I go to see my oncologist in a little while, just a normal visit not a PCR result test this time.

I was told way back that I would find out who my true friends are when I got diagnosed.  Boy, were they right?  I am not contagious and can do some things, maybe a little slower sometimes.  If they invite me to go out I could just rest awhile before going out but they don't even ask.  I started doing some scrap booking but even that's expensive to do.  I need every penny for my son now.  He had no symptoms at all, endoscopy was being done to see how bad his acid reflux was and found it by accident that way.  They say a mild case but needs to go all the way with the diet, maybe 6 months down the road he can try something he had to give up and see how it goes.  From what I understand after his body is glutin free if he eats something with glutin in it he may get sick, if not then he may be allowed to put that back into his diet.  We go see a dietrician this Tuesday.  If any one has any suggestions on that I would appreciate them.

                                     Thanks for letting me vent, Dee

  P.S.  I must of done something really bad at some time in my life for God to be punishing me with all this.  I just don't get it at times, why all these things happening in my family?  You know the old saying "calgon take me away"  well I asked and she never showed the hell up!!!  Neither did the cleaning fairy!!!!

[Scottie]

Yep Dee, I kinda know how you're feeling. Look down a few posts and you'll see what I mean. I suppose we all get a little tired and weak knee'd, but the object at hand is to keep our heads up high. So many times I walk down those busy streets of Chicago and wonder what story it is that each person has.

Your story is to take good care of your son and husband and hope that the calgon lady WILL come. I wish you all the best and know that one day you'll beat this disease and your family will look back on it and appreciate you for all you've done selflessly for them.            And then you will smile.

       God Bless,  Scott...

[jrsboo]

I too have been shocked at how many friends just melted away.  But I think that it is mostly because they don't know what to do, and without someone telling them that you need to be contacted, they will assume that you are fine.  I am struggling with this myself.  I have had enough psych classes (even have a Bachelors degree in that) to know that the problem is that people in general are not good at stepping in and helping without being asked.  But most are thrilled to be asked to help. 

However, knowing that and living that are two different things. 

I just got a chatty email from a friend of almost 20 years, who knew that I was diagnosed, and hasn't contacted me since, to tell me all about what things she has been up to (and I find them ridiculous) and oh, when can she come and see me?  I was too angry to respond right away, so she actually emails again the next day to see if I got her email.  Am I supposed to jump up and down with joy that she deigned to send me an email?  And now she wants to come over and see me in the middle of a work day.  Hello............I actually have stuff to do during the day, granted I am self employed and can usually make the time, but I don't know if I want to.  She is the one who has never had a job in her entire damn life, just lives off her husband.

And what am I supposed to do with the anger and hurt I feel? 

Sigh.

But all of that is not productive.  I know that.  But it sure is hard to remember to take the high road sometimes.

Maybe your friends are waiting for you to contact them and offer to be the designated driver..........when you feel up to it.

And you can vent at me anytime (grins)

Caroline

[reedgirl]

Wow Dee...sorry to hear about the "great friends" you had, or have or whatever.  I just can't understand why people react the way they do. We are not experiencing friend issues like you mention, thankfully we have great friends.

About your son, my daughter and I have stomach troubles and went on a gluten free diet.  A chiropractor I see first suggested me trying gluten free because my sinus' are terribly bad and it would help that as well as my frequent headaches and stomach issues.  We had blood tests done, they are not the most accurate, and were told they came back negative.  Either way I decided we were going to try gluten free foods.  I ordered stuff from amazon.  They have bread mixes that are really pretty good to eat, also they have hot dog and hamburger buns that aren't too bad, just have to toast them first, gluten free pasta's are great for spagetti and macaroni and cheese.  In our area more grocery stores are carrying g-free foods, I know they have cake mixes, brownie mix, and bisquick is now making a g-free mix as well.  The snack bars or cereal bars are real good too, just cheaper to buy in bulk from amazon.  The first thing I did was buy Elizabeth Hasslebacks g-free diet book from amazon.  It gives a lot of great information about the disease and what you can and can not eat. Once he cleans his system of the gluten he may be able to have it in very small amounts, he'll probably get sick the first time he eats it again,  I did, hit me at 3 in the morning, since then I have tolerated it better but once I get too much my body reminds me.  I may not have a diagnosis of celiac but I do believe my daughter and I have a gluten sensitivity and the best is to avoid it, its actually not good for anyone to consume too much gluten.

Good luck with your son and his diet.  Also, you may want to consider sending an updated letter out to all your friends just letting them know how things are going for you and kindly mention the lonliness and the importance of having a good support group.  They may be afraid to ask you to do things and or they may not realize they are neglecting you and hurting you.

Best wishes,

Audrey

[GerryL]

Hi Dee,

I think some of it may also be a lack of understanding of the disease. Once I started to get a handle on the TKIs, side effects and in particular life expectancy etc, I then explained it all to my close friends. Occasionally I have to remind one or two of them about things (I find this with my "healthy" friends) but they are cool with things once they understand. Why don't you organize a night out with your friends rather then waiting for them to ask you, that way they can see for themselves that you're up to going out with them.

Hope everything goes well with your husband and son.

[Trey]

http://www.youtube.c...h?v=MVLzkTuVmrw

[dee145]

Thanks Trey!!!!   But the damn women still didn't show up or the cleaning lady!!!

                                    Dee