Jump to content


Photo

I Am So Tired Of Everything


  • Please log in to reply
33 replies to this topic

#1 Judy2

Judy2

    New Member

  • Members
  • Pip
  • 0 posts

Posted 25 February 2012 - 04:28 PM

Hi Everyone,

I feel like I shouldn't complain, what with the things others are going through but I am so tired of everything and I just need to vent. Since I have been on Valtrex my eyes are becoming very dry, painfully so. Also, this morning I woke up to find my skin is starting to break out. The last thing I need right now is acne. It seems I get over one side effect and then another side effect pops up. I know it may be stupid to complain about acne but it is a visible reminder of what is wrong with me. I am so sick of having CML, of having Wegener's, of all the medications I have had to take and am still taking over this last year for both conditions. I am sick of having to worry about both conditions, about getting a good response from my meds for CML and about losing my response from my meds for Wegener's. Does it ever end? Everything just feels out of control in my life right now. Before last Feb.I was living my life, minding my own business and now my body seems to be falling apart. Every  month I hope my PCR decreases and every 2 months I hope my ANCA (test for Wegener's) remains negative. Everythng just seems overwhelming right now, perhaps tomorrow will be a better day. Thanks for letting me vent.

Judy



#2 Pin

Pin

    Advanced Member

  • Members
  • PipPipPip
  • 202 posts

Posted 25 February 2012 - 04:57 PM

Judy, I am so sorry you are having such a rough time, that is a lot of things to deal with - it must be very overwhelming. I know that when more things pile up on top of me I just feel completely overwhelmed and so very tired. I hope things improve for you very soon - when are you able to stop the Valtrex? I hope the shingles symptoms have gotten better on it at least. Pin xxx.


Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.

 

2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14


#3 Chris1579

Chris1579

    New Member

  • Members
  • Pip
  • 0 posts

Posted 25 February 2012 - 05:00 PM

Hi, Judy,

I so hope tomorrow will be a better day for you!  It must be so very difficult to deal with one day just living your life and the next you have CML and a body that is seeming to fall apart - sometimes a little venting does just the trick and there is nothing wrong with a little complaining!  Stay Strong!

I will keep you in my thoughts and prayers!

Christa



#4 Tedsey

Tedsey

    Advanced Member

  • Members
  • PipPipPip
  • 85 posts

Posted 25 February 2012 - 05:11 PM

Judy,

I am so sorry you are feeling so miserable.  I can relate.  I get chronic mouth ulcers since on Sprycel, (and I mean big holes, my mouth is full of scars and I am losing my sense of taste--which is horrible because I love to cook and bake so much).  I also get an acne like condition and now horrible eczema like when I was a little kid.  I used to have perfect skin.  Oh well...  I totally understand.  You have been through the ringer.  I understand what you mean feeling like your body has betrayed you.  I was young and healthy with a baby and a toddler only 2 years ago....  But I have hope the drugs will work and the side-effects will wain (actually, some of mine have).  Often, I don't even really know if what I think are side-effects are really side-effects, but from some other origin.  It seems that everything that goes wrong is somehow related to CML and the drug therapy.  It is hard to believe anything that ails me exists outside of this scenario.  To be ignorant of my mortality again...  Anyway, I truly hope things get better for you.  Wish there was something I could say or do to alleviate your pain.  It must be so hard to deal with two serious conditions.  I can understand how this would get to you.  Sending good vibes and best wishes your way.  Virtual hugs.

Tedsey    



#5 Judy2

Judy2

    New Member

  • Members
  • Pip
  • 0 posts

Posted 25 February 2012 - 05:33 PM

HI Everyone,

Thank you so much for replying, you have no idea how much it means to me. I really don't know if I would be able to make it through everything without all you guys. I was afraid to complain, I thought people would say I'm making a big deal out of nothing so it is extra special to me to see all this support.

Pin, the shingles are better but I'm supposed to take the Valtrex for one year. I think I'm going to try ½ dose though, the dry eyes are very painful.

Christa, thank you for keeping me in your thoughts and prayers, I know you have a lot on your mind with your dad.

Teds, thanks for the virtual  hugs and I'm  hoping your side effects get better too.

Thanks again everyone. I don't feel so alone now, I feel understood and that's a great feeling.

Judy



#6 Marnie

Marnie

    Advanced Member

  • Members
  • PipPipPip
  • 396 posts

Posted 25 February 2012 - 08:59 PM

Hi, Judy. . .sorry you had the blues, but glad that you are feeling better.  I've had parent/teacher conferences Thur/Fri, so been out of touch for a while. 

Everyone is allowed to have down days now and again.  It's nice to have a place to vent. . .because the people around us, I think, don't know what we feel and perhaps get a bit immune to it.  Best of luck. . .

Marnie



#7 hannibellemo

hannibellemo

    Advanced Member

  • Members
  • PipPipPip
  • 728 posts
  • LocationNorth Central Iowa

Posted 25 February 2012 - 09:19 PM

Judy,

I had no idea you were going through so much! You have every right to vent and I hope you take the opportunity as often as you need it here. We'll stay right by your side all the way!

Warm thoughts and ((hugs))!

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#8 janne

janne

    Member

  • Members
  • PipPip
  • 16 posts

Posted 25 February 2012 - 09:24 PM

Judy,

Absolutely you must vent when you need to..when we feel like no one could understand, we do know that our BIFs on this board are going to ! If is never fun to feel crummy and it is definitely not fun to feel crummy day after day !!  We hear you and we are here for you...!! Hope you feel better soon. Janne


Dx'd: 8/2008. Started Gleevec 400 mg 11/08. 

Drug break 2011.

Started Tasigna 4/11 450 mg.

Reduction to 300 mg Tasigna 1/2012.

PCRU 9/2012.

12/2012 Detectable.

PCRU 4/2013 through 3/2015. (Reduced to 150 mg 7/2014)

12/2015  ? slightly detectable at probably less than 0.01% per Mayo Clinic.

4/2016 PCRU. Still at 150 mg Tasigna.

 

CESSATION: stopped treatment 7/20/2017. 

9/6/2017:  barely detectable at 0.01%. 

12/11/2017: PCR at 0.09% (did not do the monthly PCR testing.) 

12/18/2017: Inevitable call from Onc. Started back on Tasigna at 150 mg. (Considering Sprycel low dose.) 


#9 Fas

Fas

    New Member

  • Members
  • Pip
  • 0 posts

Posted 25 February 2012 - 09:31 PM

Judy,

I don't think there is a person on this site who can not relate in one way or another and at times has not had the need to vent.  Venting is a good thing - those emotions need to come out, so we can refocus and continue to move forward.  I know when I get rashes it brings me down worst than anything because I just fell as though my outside looks like my inside feels.  You have all the right in the world to vent and feel tire of facing such difficult challenges.  I wish I could offer something of value that would help you feel better.  Life does have a way of turning around when we least aspect and it can well turn for the good, and I very much hope this is soon the case for you.  Take it one day at a time (know this is easier said than done - i struggle with it all the time) and please do acknowledge your strength as you appear to be a very strong person. 

Sending positive thoughts and energy,

Fran



#10 Chris1579

Chris1579

    New Member

  • Members
  • Pip
  • 0 posts

Posted 25 February 2012 - 09:45 PM

Hey, Judy.

I just wanted to check on you, been thinking about you most of the day and hoping your evening and tomorrow are better!

XO

Christa



#11 Susan61

Susan61

    Advanced Member

  • Members
  • PipPipPip
  • 43 posts
  • LocationNew Jersey

Posted 25 February 2012 - 09:53 PM

Hi Judy:  You have dealt with a lot of different issues, and you vent whenever you want.  For some reason it makes us feel better.  I have so many problems over and above my medical issues, but I keep all that part of my life to myself.

Its just that whenever you have to deal with more than one big problem, the rest just seems to be magnified.  I know thats what goes on with me.  Then I am okay for a few days, thinking all is just fine.  Then something new pops up to deal with.

     I think we all feel so lucky to have this discussion board to vent.  I have said before that you can talk to your loved ones, but nobody but the people who are actually going through the same thing can really feel for you and give good advice.  I hope some of your problems get easier through the week.  Vent as often as you want, because for some reason it make things feel better even when they do not go away.

God Bless You



#12 Judy2

Judy2

    New Member

  • Members
  • Pip
  • 0 posts

Posted 25 February 2012 - 10:47 PM

Hi Marnie, Susan. Pat Janne, Fran and Christa,

Thank you all. When I read all your replies I started to cry, but in a good way, if you know what I mean. Your support allowed me to release all the pent up emotions I have been feeling inside. I think I needed that. Fran, you are right, rashes really affect me. It is a constant visual reminder of the disease, it makes me feel like I have very little control over things. Thank you Pat, for saying you guys will stay right by my side, I wish you were all here in person so I could give you all a great big hug. On second thought, with my shingles you guys probably wouldn't want to be too near me. Susan, maybe you shouldn't keep your non-medical problems to yourself. I know I would be glad to listen to your other problems and I'm sure everyone on this board feels the same way. After all, I believe all the stresses we go through in life effect our health. We are more than just CML and I for one would be glad to help in anyway I could with any problem you may have. Thanks Janne, Marnie and everyone, it is true that nobody knows what we are really going through except others who have CML. I do have some very supportive lifelong friends and they are always ready to lend an ear but I feel there is only so much I can burden them with my medcial issues. Christa, thank you for thinking of me. I wanted to tell you that even though you don't have CML you will need support for yourself. Sometimes I think the caregivers are overlooked. I spent 2008-2011 taking care of my dear step-father and in ways, I found that just as stressful as being dx myself. Reach out to others for yourself, not just for your father.

Thanks again, everyone. You are all teriffic and you are what keeps me going through the difficult times.

Judy



#13 Chris1579

Chris1579

    New Member

  • Members
  • Pip
  • 0 posts

Posted 25 February 2012 - 10:56 PM

You are a very sweet person - tomorrow is a new day



#14 pammartin

pammartin

    Advanced Member

  • Members
  • PipPipPip
  • 631 posts
  • LocationPennsylvania

Posted 26 February 2012 - 10:07 AM

Hi Judy,

I think we need another phone marathon conversation, we laugh, yell, complain, vent, and find good things for each of us to consider.  I hope today is a much better day for you, take care.

Pam



#15 NotJack?

NotJack?

    New Member

  • Members
  • Pip
  • 3 posts

Posted 26 February 2012 - 12:22 PM

I have nothing to add to the conversation other than to add my support and ear,  the others have said it all,  Jack


Jack


#16 Guest_billronm_*

Guest_billronm_*
  • Guests

Posted 26 February 2012 - 04:36 PM

High Judy,

   These feelings really suck!  We go on for a while then everything hits us all over I'm sending you a virtual hug.  We're leaving tomorrow morning so I don't know if I'll be able to use my computer while we're traveling. Gotta go we're all going out to dinner.      Lol Billie



#17 Happycat

Happycat

    New Member

  • Members
  • Pip
  • 5 posts

Posted 26 February 2012 - 05:13 PM

Judy,

Shingles really suck. My understanding is that it is a sign of a worn down immune system. At least, that's what the doc told my dh when he got them.  That was maybe 6-8'yrs ago. I'm not sure if he took valtrex, he did take something, just don't remember what. However, I know he didn't take it for an entire year! 

I guess with all the stress I'm under, and feeling under weather with something that feels like strep, I will count myself lucky to NOT get shingles!

Anyway, I hope you are feeling better soon. Never worry about complaining here. Everyone feels like you on some days, we all understand.

Traci



#18 Chris1579

Chris1579

    New Member

  • Members
  • Pip
  • 0 posts

Posted 26 February 2012 - 05:26 PM

Sending good thoughts your way! 

XOXO



#19 Judy2

Judy2

    New Member

  • Members
  • Pip
  • 0 posts

Posted 26 February 2012 - 08:11 PM

Hi Pam M., Jack , Billie, Christa,

Thanks so much for all your support, it means so much to me. Today was better than yesterday as I was on the go all day so didn't have as much time to dwell. Pam, I think you are right, we do need another marathon phone conversation. BTW, did you get a copy of your liver test results? Anyway, I spent another day going back and forth to the dumpsters cleaning out my mother and step-father's condo. For two people who were not collectors they sure had a lot of stuff. My brother's and I are taking a lot of  stuff so when we die others will have to clean out our places ...and so the cycle continues....

Thanks again everyone, you guys are all great!!!

Judy



#20 pammartin

pammartin

    Advanced Member

  • Members
  • PipPipPip
  • 631 posts
  • LocationPennsylvania

Posted 26 February 2012 - 10:14 PM

Hi Judy, Glad today was better.  I go in tomorrow for all tests, I will start calling them after lunch for possible results, when I know you know, I promise!

Pam






1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users