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, 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.
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!
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.
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.
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. . .
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
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.
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
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,
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.
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
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!!!
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.
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,
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!
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).
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!
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.
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.
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,
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
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,