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I Am So Tired Of Everything


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#21 Rissa

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Posted 27 February 2012 - 04:00 PM

I hear ya Judy!  Vent all you want.  Sometimes I wish I had a punching bag to relieve stress, but I'm not sure I would actually have the energy to hit it!  And I'm sooooooo sloooooooow these days.  We went to home depot yesterday and my husband kept having to stop and wait for me to catch up.  I think I could have taken a nap right there in the middle of the store. 

Anyway, hope you are feeling better. 



#22 Judy2

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Posted 27 February 2012 - 06:48 PM

Hi Rissa and Pam M.,

Thank you for replying. I feel better today thanks to the support of everyone on the board. Rissa, I know the feeling of wanting to take a nap in the middle of the store. I have been so tired that some days I feel as if I can hardly breath, although I will say that has eased up a little, plus Home Depot is not the most exciting place to shop. If I have to be tired I'd much rather be tired in Nordstroms.   Pam M, I hope you got your test results and that all your counts were good. Isn't it crazy how our lives have changed in the past year?

Thanks again you guys,

Judy



#23 pammartin

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Posted 27 February 2012 - 07:33 PM

Hey Judy,

I called the dr office around 3:30 today, and in usual fashion, no return call.  As soon as I hear I will pass along the results. I think I am more nervous about the liver enzyme results than I am the white count and platelets!  Never thought I would say that.  Glad you had a better day.  I have lived in Home Depot and Lowes since buying this house, I think I would know where all the items are in both stores blindfolded!

Take care

Pam



#24 Judy2

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Posted 27 February 2012 - 09:57 PM

Hi Pam M.,

I'm sorry you have to wait another day to get your results, especially since you are concerned about your liver enzymes. I think if there was a problem, though, your doctor's office would have called to let you know. I'll keep my fingers crossed for you. Sorry you are living in Home Depot. I live in Marshall's. I don't know if there are Marshalls in your neck of the woods, it is a great clothing and home goods store, brand names at great prices ( I sound like a commercial).

Judy



#25 Fas

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Posted 28 February 2012 - 02:52 AM

Judy,

So glad you are feeling better.  I was ready to scream myself when I read your post the other day.  I felt you on a very visceral level.  I have been having a few of those "oops, the other shoe just dropped again kinda weeks...more crap to deal with" 

I'm better, and have gotten my 1,000,000th second wind allowing me to find the wherewithal (once again) to move through the difficulties.  This board is full of so many strong and compassion people - reading the posts helps me find my strength when I think I have nothing left -Thank you all! 

Keep stepping,

Fran



#26 alexjiechuxi

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Posted 28 February 2012 - 03:40 AM

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#27 pammartin

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Posted 28 February 2012 - 07:40 AM

Hey Billie,

Have a safe trip home, and in a few days welcome back to PA!

Pam



#28 pamsouth

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Posted 28 February 2012 - 04:13 PM

Fran, 

Regarding your "I'm better, and have gotten my 1,000,000th second wind allowing me to find the wherewithal (once again) to move through the difficulties.  This board is full of so many strong and compassion people - reading the posts helps me find my strength when I think I have nothing left -Thank you all! ""

I concur whole heartily.  I am been fighting with Insurance now since last Nov 2011.  They have reprocessed this claim 3 times now.  To make a long story short, now they have decided even with the correct coding, that they might not continue to pay for oncologist office visits with follow up to oral drug like they have for 6 1/2 years.  Even though I have a letter from insurance dated June 2006 that they would allow a certain code with office visit to oncologist while on an oral drug they would pay oncologist (I still have the letter) Now they want to run it back to the board again, as they have decided the rule may have been interpreted wrong for 6 1/2 years.  I need a praying miracle here.

Your right the board keep us strong and motivated otherwise it times like these I would crash.  Especailly if I had to change drugs and instead of seeing an onc ever 3 to 4 months, I would have to probably go weekly for awhile, (who knows what toxic new drugs will have, especially after being on G for 6 1/2 years. and if insurance doesn't pay well that could be a lot of out of pocket expense for us.  Our insurance just double our out of pocket and deductible this year along with are cobras. What next?

I was hoping when I go to new onc, as they do their labs in house I would have more favorable result they sending labs from Indiana to New Jersey.  It turns out that N J had changed over to Int Scale some time ago and no one bother to tell my onc or me.

PamSouth


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#29 Judy2

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Posted 28 February 2012 - 04:58 PM

Hi Fran and Pam S.,

Yes, this discussion board is a lifesaver for me also. Things just seem so tenuous lately, everything is throwing me for a loop. Something I wouldn't have given a second thought to in the past is now "the last straw" and I'm having many of these last straw moments lately. Fran, sorry for all your "crap", shouldn't having CML make us exempt from other crap? Pam S., we should not have to deal with insurance matters, having CML is  more than enough to deal with. The system sucks (can I say sucks on this board?).

BTW, if anyone can help me with this problem I'd appreciate it. When I go to this discussion board instead of seeing recent discussions at the top of the page I now see recent activity and it is driving me crazy, (I don't have far to go!!!). How do I get recent discussions back to the top of the page and eliminate recent activity? I did post this question on the general discussion board but any advice would be appreciated. Thanks.

Judy



#30 Fas

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Posted 28 February 2012 - 06:57 PM

Judy,

I noticed the change from recent discussions to recent activity at 3 am this morning when I logged in - another sleep challenged night.  I have tried all my preference options and can not seem to change the interface view back.  Now that I think about it I was having a lot of trouble having my post go through this morning and the system kept hanging up.  I am assuming the site was upgrading their interface and this is the new look, but I am only guessing.  I too liked the previous way and would love to change back if anyone knows how to do it.

Thank you for your support and I agree that CML should be enough for all of us.  I am so sorry you need to deal with other health concerns as well.  It's unfair and bad things happen to good people for no reason at all.  I hope you are doing well today.  One moment, one hour, one day at a time and I hope that soon things will fall into place for the better.  

I am not at my most articulate when I am being hit with more than I feel I can bear, so I use words like "crap", albeit I am sure a lot of us can relate to that word.  When the pain or rashes or etc... get to me and I can not take it I feel this turmoil build inside me.  I deal with it by cocooning myself.  I go inward for a while in the gentleness way I can and allow the internal turmoil I am feeling to pass through me, so I can again regroup.  Of course I discuss it and let people know what is going on, but I tend to think and feel my way through it more than verbalize it.  I wish I was better at venting -loudly!  My husband, family and friends have gotten familiar with the routine over the years and know to give me the time I need to recoup.  I think I have figured out what make that frustration builds up and why it happens.   Every so often, the duration of which varies depending on what life, other health issues, Gleevec and its side effects bring, I find myself in this emotional place froth with frustration, sadness, and sometimes anger.   I think it is related to the unending experience of living with CML and taking an oral chemotherapy.   This experience has a beginning, but no real middle or end.  It begins and then just continues.  I have had friends and family that have gone through cancer treatment, were pronounced cured and the treatment stopped, and I am so happy for them and the blessing of their wellness.  Taking a pill or pills every day seems easy, but it isn't - it is hard, so very hard, at least for me.  It is so tiring and if you have to manage co-occurring conditions all the more challenging.  I think the open endless of this experience gets to me and I so desperately want closure that this turmoil explodes inside of me.  I have come to terms with this reality over the years and so these feelings have changed, lessened and have become more predictable and manageable.  Perhaps it is because I have been doing this for almost 10 years I realize that the blessings far outweigh the challenges, albeit there are moments when that fact is so not clear.  Recognizing the good in this experience allows me to continue to move through the difficult times and mostly I am good, and I always try to keep that at the fore of my thoughts.  Not sure what took me to share this, but it just seemed right at the moment.  Hope this was not too much of a downer.  Understanding this about myself and learning how to manage it helps me to better cope -perhaps someone else can take something from this sharing.  I know off topic things that members have shared have been light blubs moments for me.        

Sending you wellness, Take good care,

Fran



#31 Fas

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Posted 28 February 2012 - 07:12 PM

Pam,

I am glad that you too find strength and support here.  This site rocks!  I am constantly learning things of value.

I am so sorry that you must repeatedly explain things to your insurance company that should require absolutely no explanation.  CML is a cancer you need to see an oncologist.  The medication is life sustaining - you need it.  End of explanation.   I think insurance companies view cancer treatment as having a specific duration after which the illness is resolved one way or another.  They are so short sighted deliberately so and want to hang onto old policies which not longer apply to the advances in treatment.  It will be brave and determined people like you that will help to change their understanding and policies.

It must be so frustrating to have to deal with this - Continue to fight the good fight,

Fran 



#32 Judy2

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Posted 28 February 2012 - 08:06 PM

Hi Fran,

Thank you, thank you, thank you, you express yourself beautifully. You said that this experience has a beginning but no middle or end, that this is endless. Fran, you are so right, that is how I have been feeling but have not been able to put it into words. What we are going through is endless, pills, blood counts, PCR tests and then, hopefully, all is well and then we start again more pills, blood counts, PCR tests. After all who can ride a roller coaster day after day and not get tired and even when things seem as if they have straightened out we never know if we will end up on that roller coaster again or worse if the ride will only be downhill. Everytime I hear of someone losing their response it hits home, it's a punch in the stomach showing me just how serious a disease this is. Thank you so much for sharing, you helped me realize what the inner turmoil was about,I have seen better weeks,(I've been very cranky ).

In regards to the recent activity- so it's  not just me!!!

Thanks again, Fran

xoxo

Judy



#33 Fas

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Posted 28 February 2012 - 08:38 PM

Judy,

Glad I could share something useful.  Think your roller coaster analogy is spot on.  One thing I would include in it is the times it goes off the track entirely.  LOL

Wishing you better weeks...an endless number of them!

Hugs,

Fran



#34 pamsouth

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Posted 29 February 2012 - 12:31 AM

Judy 2,

Sucks is permissible.  

PamSouth


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