The Leukemia & Lymphoma Society - Fighting Blood Cancers
55 Replies Latest reply: Jul 7, 2012 9:46 AM by pammartin RSS

People never cease to amaze me on the idiocy they can exhibit.

pammartin Registered Users
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There are family issues, not sharing them, but I am posting a short part of what a former close family member wrote to me today concerning my leukemia, or in her opinion, the lack of the leukemia.

 

As far as your disease, i do not have a medical degree so I am not qualified to speak about it, so instead of opening up an entire can of worms, i will just say that there is a lot of things that don't make any sense and I have shared the info in its entirety with others and they have come to the same conclusion. Some of the things are just not making sense.  It all goes back to the fact that I am just not sure what to believe.  You say you were quarantined for 3 months at Christmas.  Hard to believe that if you were that ill and it was that dangerous you were not in a quarantine unit of the hospital???

 

So little is learned and know from the outside world about how our lives really work or do not work.  Of all the hateful things, stating I am falsifying my leukemia or symptoms is one of cruelest statements one can make to another, friend or foe or relative. 

 

I will rid the negative, and move forward, but it has brought me a new understanding about how others see or do not see our struggles, and I have no time for accusations or attacks.  If anyone really wants proof, I have a three inch folder full of labs, BMB results, and visits.  I refuse to try to prove I have a disease, my family lives, eats, breathes, sleeps, this damned leukemia, that is proof enough for anyone.

I have no more time for negatives, and refuse to be a part of them.

 

If someone in your life is treating you this way, it is time to move forward.  They are the ones that are really ill, at least we are seeking help.

Pam

  • Re: People never cease to amaze me on the idiocy they can exhibit.
    Tex Registered Users
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    I can't believe this.  Why the hell would you make something like this up?  Sounds like your family is kind of F-ed up...at least this one relative. 

     

    It is time to move forward.  I'd quit reading this asshole's letters and just delete them as they come in.  I'd probably write him/her a nice FOAD letter, too.

     

    I'm sorry about this.

     

    Now, at the risk of having terrible timing, this is the first I heard about three months of quarantine.  WTH happened to cause that?

    • Re: People never cease to amaze me on the idiocy they can exhibit.
      pammartin Registered Users
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      It wasn't an actual quarantine, like hospital type, my labs were low, neuts were in the .70's, white count 1.8, red not much better, I would have to go and look up actuals.  I was told to be careful of public places by medical people, the immune was compromised, and platelets were 48,000 (if memory serves) long way from the 2 mil they were in Novemeber.  As a precaution, and at orders from both docs, we stayed in, no one came to house, guys stripped at the door and clothes were washed immediately, a 17 year old germ factory and my husband works for Veolia, a environmental (trash) removal company, so it was a given he was carrying 'things'.  Many on here said to ignore the docs, they had numbers that low, but I was frightened, it was winter, and most of the people we would have been around, including this relative have young children, again walking germ factories. Because my situation was so unique to local docs, the white count stable but platelets in orbit, they were setting the stage for transplant, although I was not interested in the option, I wanted to see if the meds would work, they were moving forward with donor banks research and prep.  Lo and behold everything fell into place, and a few months ago I dropped the Sprycel to 100 mg again, for a while I took 140 mg and hydrea 2000 mg together (hence the bottom falling out on my labs)  it worked but too well, and to add a dig I really think one doctor thought the other was watching numbers and the situation was also in reverse, there was no reason for me to drop that hard that fast, I was having labs drawn every day it was apparent how hard they were falling.  Now I know better, then I was scared sheetless.  

       

      I did send a reply of sorts, think it got there before I was blocked forever from access.  You of all people will probably appreciate the humor contained.  Again missing all of the personal and family drama, my final lines were something like this;

      Throughout the years there have been more than a few times I am eternally grateful not one speck of (insert paternal last name here) blood runs in my veins, this is yet another one.  But congratulations to you (my niece) although you have fought it for years, you can finally stand proud and call yourself a true (insert paternal name here).  Thank you for your response. 

      I can honestly ditch the family name, bloodlines do not lie, although I do experience a bit of guilt because I adored my father and he felt the same, he would be hurt.  But I also know he would not tolerate all this crap, especially if one is sick.  If the relative in question would have even taken a few hours to discover how I was, it would be apparent I am far from what I was the last time we visited eye to eye, over a year ago.  I don't whine and complain on public chat programs (well except this one)  and I don't always tell people how I really am.  Nothing anyone can do about it anyway, it is, what it is.  Hopefully the saga is done, her personality will keep it alive, she will plot, vent, scheme, try to control, write letters, never send them but she might, they will just be returned and unopened, text, threaten, and look for support of her opinion, and she will probably still be miserable.   It amazes me the ignorance of people, and because of some reading and/or friends feedback (she has a friend that is a pharmacist) I bet she believes she has a boat load of info, hell I have the CML and what know can fit into a toy tugboat for a child's bath, and still have room for passengers...

       

      Saddest part, upon reflection with my husband, he asked me honestly what we will be missing.  (Previous two years I have drove the 70+ miles to deliver Christmas presents, once she knowing I was on the way, and they left for the store.  I did get a phone text photo of the kids with presents, so that was something.  Last year when she miscarried I drove out immediately and spent the afternoon & evening with her.  I did get thank you's for the gift cards this past Christmas.  Outside of a few calls, many text messages, and the Facebook contact, what will we be missing?  (My son's birthday and Christmas have not been acknowledged in 3 years.  Not looking for gifts, but a card or call would be nice.)  I had no answer for him, because in asking he already knew what the answer would be.  We will be missing little in the scope of family life.

      I am not blameless, I missed birthdays, went within 15 miles of her home while driving 5 hours to deliver my son to his father at our halfway point, although since the leukemia I have not made that trip once, not sure if I can. I worked on New Years Eve when she married her husband of today.  I could have went later, but they were not having a dinner, they were meeting at a Holiday Inn for a party, pay your own way and it did not start till 9.  I don't travel on New Years Eve, especially at night. In my younger days I would say it was amateur night and I was a professional drunk, I never went out.  Ridiculous now, then it was funny. 

       

      There is family conflict, and I believe she is going thought lots herself, much of it unknown, it weird how she has followed my footsteps in life, every celebration, tragedy, and event is closely related to my past choices.  I can forgive and forget all the other stuff, it just isn't important, but saying I am not being square with the leukemia is unforgivable territory.  And although I am taught to forgive, that part is not included.  Yes there are frauds, we have all discussed them at one time or another, but alas, as much as I would love to lay claim to CML fraud and be exposed, I cannot, and for her to even imply or state the disease is not as bad or even not present removes any and all desire to meet again.  It has been 30 or so years since I felt the desire to see if my right arm still packs the power it once did behind a full draw.  Yesterday was one of those days.

      Oh, I had a roll going there, perhaps it was needed. 

      Thanks for listening/reading/responding

      Pam

      • Re: People never cease to amaze me on the idiocy they can exhibit.
        porciniak Registered Users
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        Ah dear, I'm so sorry the family situation is less than supportive.

         

        The best thing I ever did was to refuse to do the 'family gatherings'.  It took me 15 years of frustration but I finally said, NO MORE.  Yes, I've had some regrets.  My daughter does not know some of her fathers family, oh well my sanity was at stake.

         

        <<hugs>>

        • Re: People never cease to amaze me on the idiocy they can exhibit.
          pammartin Registered Users
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          I really didn't realize how much I had typed until I saw it.  I guess it needed to come out, here is as good a place as any.  I am still annoyed, and there are moments when I visualize knocking the female on her rump, but they are lessening.  Sanity, it is at stake, I have said this many times over the past several days.  I had it all planned, service, music, poems, stories, photos, I find it very odd I could handle my proposed death if the meds didn't work, but I am finding it extremely hard to live.  That sounds a bit dramatic, but I accepted I would probably die with the leukemia, even agreed to a house purchase I disliked upon first sight, but it was not myself I pictured living at the residence; never thought I was going to live with the leukemia.  Now, to figure out how.  Sometimes it is harder than it sounds. 

          Thanks for the words of support and good advice, I do have that 'out' so to speak, I really am only half of what all the others are, so I am one of a kind.  And I can denounce that side as unimportant.

          • Re: People never cease to amaze me on the idiocy they can exhibit.
            Tex Registered Users
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            This stuff doesn't usually crop up in one generation, it tends to be a family tradition.  For all you know, your dad might have wished he could divorce himself from the family name, too. 

             

            I figure my dad was screwed around by his parents.  And, apparently, we have the generation-skipping gene that assists one in becoming ab alcoholic.  My two nieces are already in AA and have been since their early 20s.  Blech.

             

            Anyway, my point is that we're all crapped on as kids...some worse than others and some far, far worse than others.  The important thing is whether we accept it or whether we decide to interrupt and change the family patterns.

             

            I think that's probably something like 95% of what all counseling is about.  Just try to imagine how much healthier this world would be if we could all overcome our crappy family practices and childhoods.  For better or worse, the only way some of us can do that is to remove ourselves from the toxic environment. 

             

            Funny thing, in doing so I continue a family tradition.  My great-grandfather (dad's side) had some kind of issue with his father and left Nova Scotia and never went back.  My mother and her brother went over 30 years with no contact (at my dad's insistence).  My dad and I have gone through periods where we don't speak.  We're over three months into our latest bout and I don't expect to talk to him again.  As he cut off communications this time, it's his choice.  I don't think I'll be open to a deathbed reconciliation, if he has a deathbed so I hope he acts before then...but then again, I don't care.  Just a sample of the conflicting emotions this crap brings out.

             

            God, I hate the F-ing drama of it all.  That seems to be more wearing than the severely hurt feelings and rejection.

            • Re: People never cease to amaze me on the idiocy they can exhibit.
              porciniak Registered Users
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              Ah Tex, you do put your finger on issues, eh?

               

              RE:  generational patterns

               

              This brought to mind one of my favorite books Living Buddha, Living Christ by Thich Nhat Hanh.  He tells great teaching stories, one of which brings out this very subject.  If you haven't read it I highly recommend it.

               

              My SIL & I've discussed this as I have with my siblings.  Of course, my sibs discount it 'cause none of us are alcoholics, no matter that two of us married alcoholics and we've all had issues with substance abuse and anger.  I understand it's very hard to examine the origin's of our self defeating behavior; but, if we don't how can it be changed?.

              • Re: People never cease to amaze me on the idiocy they can exhibit.
                Tex Registered Users
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                porciniak wrote:

                 

                Ah Tex, you do put your finger on issues, eh?

                 

                Well, that was my job so I hope I do occasionally.  I'd like to think I earned my pitiable salaries.

                 

                I'm not sure about your last paragraph.  Are you saying there's some alcoholism in your family but neither you or your siblings are alcoholics?  What generation are you?  IOW, was a parent (or parents) alcoholic or was it grandparents?

                 

                Hell, I think the vast majority of our generation has various substance "abuse" issues.  (Abuse can be defined so many different ways.)  Still, if it turned into addiction, that could be a sign of same "disease" different drug.  I don't know but family history can affect us by example and by genetics.

                 

                I think it's good to identify the problems our upbringing cause.  But if that's all we do, then we're just a bunch of whiny Boomers.  It's good to know why we do something but mostly because it gives us the incite we need to disrupt the behavior and replace it with healthy behavior.  That's tough, it's easy to assign blame but not so easy to stand up and take responsibility for ourselves.

                • Re: People never cease to amaze me on the idiocy they can exhibit.
                  porciniak Registered Users
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                  Tex wrote:

                   

                  porciniak wrote:

                   

                  Ah Tex, you do put your finger on issues, eh?

                   

                  Well, that was my job so I hope I do occasionally.  I'd like to think I earned my pitiable salaries.

                   

                  I'm not sure about your last paragraph.  Are you saying there's some alcoholism in your family but neither you or your siblings are alcoholics?  What generation are you?  IOW, was a parent (or parents) alcoholic or was it grandparents?

                   

                   

                  Ah, well, very long multigenerational story, neither my father nor mother drank alcohol.  My mother had a 'diet pill' habit, thanks to our family GP .

                   

                  My father's family, who we saw very little of, contained a fair number of alcoholics, both of his brothers, one reformed, one functional, his only sister married one and spawned a couple of sons who were and a daughter who married one , a wife beater to boot.  We only socialized with the 'born again' Uncle on holiday's and other social events with his family only included two of his nephews, non-drinkers, who were near my fathers age.  My grandfather was most likely one too; but I have no stories to confirm.

                   

                  My mothers biological father was an alcoholic who committed suicide when he quit drinking. 

                   

                  To acknowledge and accept the propensity for addiction is awakening.  When in lots of pain, bum shoulder, during the 12 rounds of cvp in 08, trying to avoid narcotics I was up to 14 tabs of otc pain relievers before switching to the stronger stuff.  Thankfully, the narcotics only alleviated the pain  

                   

                  So, yes, understanding facilitate proactive behavior, rather than using 'whatever' as a crutch to whine in self pity is critical.

                   

                  Consistent state of being, whoa. Nature only looks consistent from the outside.  Though I do think I have some idea of what you mean.

                  • Re: People never cease to amaze me on the idiocy they can exhibit.
                    Tex Registered Users
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                    porciniak wrote:

                     

                    Consistent state of being, whoa. Nature only looks consistent from the outside.  Though I do think I have some idea of what you mean.

                     

                    An example to clarify.  I decide I'm done and don't see any reason in pursuing a relationship with Dad.  Then the guilt sets in and becomes longing to have some kind of relationship before he dies and maybe get to know him.  So I call, things aren't bad, I begin to think maybe he's changed (I know, I know, don't bother, I know!) and so I go down to see him.  Within 24 hours we're insulting each other.  Sometimes there's yelling, sometimes not but it's a disruption to say the least.

                     

                    Typically, I've been able to do something about it as I'm the one who broke contact.  This time it's him, so I sit and wait.  I would like to be on decent terms with him when one of us dies.  But, the neat thing about him making the decision to break contact is I don't have to worry about it.  It's his show.

                     

                    Still, it would be nice if I always wanted to see and talk with my father.  There are other people in the world who do so.  Why not me?

                     

                    Anyway, that's what I was talking about.

                    • Re: People never cease to amaze me on the idiocy they can exhibit.
                      porciniak Registered Users
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                      Wow, I misinterpreted.  Being a perfectionist I forever try to have the 'perfect' day, lol.  That is, I want to always do the right thing and continually find that I'm only human, lol.

                       

                      However, I have worked on the very issue that you use as an example & with help from my therapist I am sometimes aware that the only relationship I can have with them is what they are able to give, not what I want.

                    • Re: People never cease to amaze me on the idiocy they can exhibit.
                      pammartin Registered Users
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                      The therapist in me states we have to accept people for who they are, even if we really don't like what that is, the human in me has lived your life and it isn't worth it.  I, like you wonder why I can't seem to get along with my 'family' (remember for the present I am an only child), it is odd, I have friends I have kept since I was 16 or so, in October I will be 50, so for 34 years, although there have been minor conflicts, disagreements, and even distance separations for quite a while, we roll right back into where we left off, a week or a year before.  I just can't find a reason why families have such a hard time, is it because we expect more out of them, perhaps they expect more out of us, we seldom live up to the expectations, and usually I have found what I am accused of is usually what the other person is doing.  Release from guilt in some way for the other?  A refusal to acknowledge their own part in the conflict, or it is just easier to verbally and sometimes physically beat up someone who is supposed to be 'family'?    I share your question, others manage family life just great, and they actually enjoy each other.  Why not me?

                      • Re: People never cease to amaze me on the idiocy they can exhibit.
                        Tex Registered Users
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                        pammartin wrote:

                         

                        I just can't find a reason why families have such a hard time, is it because we expect more out of them, perhaps they expect more out of us, we seldom live up to the expectations

                         

                        I saw a great movie back in college that never got the attention I thought/think it deserved.  It was called "Tribute" and watching it as a young man, I saw my relationship with my father on the screen.  The particulars were different, of course, but the distance and enmity between the father and son was me and my dad.

                         

                        At one point in the movie Robbie Benson is chewing out his dad, Jack Lemon, about what a crappy dad he was when he (Benson) was growing up and his disappointment.  Lemon turns on him and says, "Yeah?  Well, did you ever consider maybe you weren't the son I always wanted?"

                         

                        Yeah, expectations figure into it a lot.  However, how can we expect a child to adjust his expectations?  I expected things from my dad I couldn't have even begun to articulate or even recognize.  I was a kid.  Advanced cognition wasn't available.  So, I guess I have to put the onus on the parents. 

                         

                        Anyway, kids do have needs that are emotional, as well as physical.  I needed my dad around.  I basically spent the first 12 years of my life with my mom and older sister.  He was off chasing his ego doing business and drinking and, apparently, whoring around a bit, too.  Then he's pissed when I don't figure manhood by his standards.

                         

                        Wow, this is going farther than theoretical here.  You think you've worked through this crap then it appears out of nowhere and bites you on the butt.

                         

                        At one point about 10-15 years ago, my dad suggested I needed to stop having expectations and just accept him for who he was.  I suggested we both do that.  Thing is, it's hard to let go of basic expectations and my dad, for all of his talk, can't just sit back and not expect people to do not only what he expects but also do it exactly as he expects them to do it.  When my mom was dying, he put me through the most demeaning hell I could imagine from him.  I've always been his whipping boy.  My sister thinks my nephew replaced me but she has no idea.  The "best" my poor nephew could have ever done was fill in when my dad wanted fresh meat and I wasn't around.  I was his chateaubriand.

                         

                        Bottom line, we can't get rid of all expectations, even if the only one remaining is that you're not going to take a dump on me.  And there are some people who love to do that.  The human being can be a sick animal.

                         

                        Oh well, I had a point when I started and I think it's been swept down my stream of consciousness.  So, I'll shut up for now.

                        • Re: People never cease to amaze me on the idiocy they can exhibit.
                          porciniak Registered Users
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                          Four days!!  I've been thinking of this for 4 days? lol.  Baby keeps me busy, but in the odd moments this has been food for thought. 

                           

                          I've often thought that we've lost a major advantage of tribal living; and that is, if the parents don't do a good job there was usually someone to pick up the slack.  Small families don't help either.  In a large family one does have a better chance of having at least one other individual that operates on a similar wave length.

                           

                          Studying family history has given me some insight into repeating patterns of personality and thus needs.  Those who stayed home, those who didn't equating with the the adventurous sort vs those who were more comfortable with the comforts of familiar people and places.

                           

                          If I lived to be a thousand I could not hope to understand the why's & wherefores; only that many of us really try.  Unfortunately, there are always those who don't even have a clue that they should.  Sometimes it seems there is a preponderance of the latter.

                          • Re: People never cease to amaze me on the idiocy they can exhibit.
                            Tex Registered Users
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                            porciniak wrote:

                             

                            I've often thought that we've lost a major advantage of tribal living; and that is, if the parents don't do a good job there was usually someone to pick up the slack.

                             

                            That was Hillary's point (kind of) with It Takes a Village.  Boy, did I live in that world.  If Mom didn't catch me, Mrs Hinkle would.  If she was out, then I had to contend with Mrss Taylor, Solomon, Wllis, Fraiser or any other number of housewives (they liked the title and would kill anyone who called them a homemaker) and mothers who had time to look out the window.

                             

                            I'm so sad to see my grand kids without that type of loving care and sense of community.  Yeah, I got my ass paddled a lot more than I might have but it also gave me a sense of belonging.  It was kind of freeing, I think, to be able to go out and play and know that the mom's had your back if anything serious happened.

                             

                            I don't want to be one of those folks who thinks everything was better when he was a kid but I really grieve for the kids who have to figure out their place in today's world.

                             

                            I never even thought to look for patterns in what little I know about my ancestors.  It does appear my dad's paternal granddad and I had a bit of wander lust when we were younger and I share a brashness with my dad's mom's dad.  I don't even know as little about my mom's side of the family as I do my dad's.  Funny thing is I tend to look more like that side of the family.

            • Re: People never cease to amaze me on the idiocy they can exhibit.
              pammartin Registered Users
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              Tex,

              You are so right, (praise intended), it is the drama, this week I allowed it to affect me so severely I was physically ill.  So ridiculous when there is so much that I have to deal with, this issue is not one of them.  I am not annoyed with myself for allowing it to take over, but I pull the human card and give myself a break.

                Speaking of counseling I had several serious breakthroughs yesterday, but if anyone has been through this type of treatment and they do reach places that are emotionally devastating, there is nothing left to give and today I still feel like I have been emotionally deflated, just too much at once, although progress is a positive step. 

              I am discovering I might just be a tad bit angry I am still here, to some that would sound over the top bizarre, but I could not control this disease, and because I was not responding, I am learning I chose to control what happens upon my death.  I have it all in order, the Buffett music, the poems, the message, a few hymns all neatly arranged, guess what?  I am still here.  It is not that I wish to leave this planet, but I am a realist so I chose the path that provided me with comfort and control (perhaps control should be first).  Now, I as I have stated many times in counseling I was comfortable with my demise, it is living I am struggling with.  Then if you add the probable inside fear if I do try to 'live' again, the tables will turn once again and I fear fate and Murphy's Law.  I really am a freak, I look at my situation from a psychologist's point of view and I want to pick it apart and analyze it, really odd when it is myself that fights these demons.  On another note, we also discussed the fact I might just be a bit more than peeved at my mother's actions long ago, because of her choices there is not even an option to search for a family match, so I am beginning to consider myself an only child, something I have never really thought upon before.  It might just be one of the greatest healthy steps I have taken concerning my mental health in years. 

              I smiled when I read your post on a deathbed reconciliation.  My mother and her oldest daughter (my former sister before the only child concept) had not spoken in perhaps 20 years.  She was vocal about not contacting the daughter or permission to access a service upon her death.  I guess she was contacted, and she chose not to come, so it all worked out.  I have never been interested in last minute reconciliation, and probably never will, to me they lack sincerity.  When my father died, (not the seed sower) my aunt/his sister came to me and apologized, stating she could not come to see him, it was too hard while he was ill and marching toward death.  I could have been comforting and state it was ok, he knew she cared, instead I pointed to the casket and said, 'Sorry, you will find no forgiveness here, it is not mine to give; the person you should be talking too can no longer hear your words.'  I was not angry, just truthful.  Alcoholism and/or addiction seems to be a serious family problem, and to date it has not missed a generation affecting many members of each one, dependency runs rampage through the family, darn good thing I am an only child.

              • Re: People never cease to amaze me on the idiocy they can exhibit.
                Tex Registered Users
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                Well, there is no rule that says alcoholism can't be layered into each generation.  If the whole generation skipping thing is true, well, who's more likely to marry an alcoholic than the child of one?  Then each generation has the disease present in its grandparents and, if the theory's right, in itself.

                 

                Interesting how these diseases can have almost opposite effects on some of us.  I've always been a bit of a control freak.  Being an ACOA can do that.  The first time I've ever resigned myself to fate was with my AML.  I finally met something I knew couldn't be reasoned with, let alone controlled and I had to accept that.  I still have moments where I get control freaky -- the habits of a lifetime don't usually turn around on the spot -- but I'm much more accepting of "fate" these days.  It's kind of fun to quit worrying about what's going to happen.  So much easier to live in and experience the moment that way.

                 

                Ultimately, we try on a number of hats to see which one fits us.  Maybe your only child image will last or maybe it will inform your future as you accept that your family is your family however flawed.  Maybe not.  I never know.

                 

                To me, one of the most frustrating things is I keep trying on these different hats in an attempt to understand but as each insight fades into a new one, it becomes a little frustrating that it's beginning to seem I'll just never hit a consistent state of being.  That would b nice, at least for awhile.

                • Re: People never cease to amaze me on the idiocy they can exhibit.
                  pammartin Registered Users
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                  I must get caught up on my reading, the last days have been difficult.  Can't seem to keep the fluids rolling so every few days I am in ER, a few bags later I feel pretty good, then the next days are better and it begins again.

                   

                  Short laugh for everyone.

                   

                  Tuesday when the ER nurse was looking for a vein, she pinched and pulled my skin trying to find a good candidate.  She let go and the skin stayed in a peak where she had it pulled together.  She looked at me and said, 'Honey, that just isn't good.  We are not making whipped topping here and we aren't looking for peaks.  You, my dear are very very dry.'  

                   

                  Anyone that has ever made home made or box mix whipped topping knows the directions say whip until solid peaks form and hold.    I like her, just hope I don't see her again.

                  • Re: People never cease to amaze me on the idiocy they can exhibit.
                    porciniak Registered Users
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                    Oh Dear,

                     

                    I love making whipped creams and meringues, but she's right, it's not good when it's skin

                     

                    It's always nice to get a bag full, instant relief, I nearly talked myself  & doc into one back in April; but it was a Friday, late & I'd had to have gone to the hospital rather than there in his office, so we wrote it off until the following Monday on which I was better

                     

                    I hope you solve this soon, no fun to get frequent flier card punched at the ER.  <<hugs>> dj

                  • Re: People never cease to amaze me on the idiocy they can exhibit.
                    Tex Registered Users
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                    Been wondering where you've been, Pam.  You had me a little concerned.  Glad it was only topping off the tank.  But why can't you get enough fluids by mouth?

                     

                    You know, when I'm making the meringue for my annual egg nog, I don't look for peaks.  I wait for the stuff to get so thick the beaters stop.

                    • Re: People never cease to amaze me on the idiocy they can exhibit.
                      pammartin Registered Users
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                      Not sure what is going on with the fluids, pretty good dose of myelosuppression going on also.  I have spent the last two weeks fighting with current Pittsburgh hospital for records and I believe (not uncrossing my toes yet) I have BMB slides and all records on the way to Clevelend Clinic and what I would deem a qualified doctor to really look at my situation, if they receive the material I have an appointment on July 10.  I am taking in fluids, but my body seems to be burning them faster than I can ingest, no symptom, fever or reason for the drying out.  Of course there is that lovely frequent dose of the craps that accompany the Sprycel and lately I have had some issues with keeping things in the stomach.  I have lost about 30 lbs in the past 6 weeks and although this fat arse can stand the loss, the reasons behind the event have me stumped.  You know, above all I have been in the ER 3 times in recent weeks and not one call from oncologist or hematologist, PC doctor calls almost every other day just to check in.  And they wonder why I call them Mullet/oncologist and Meatball/hematologist.              Oh...........egg nog, it has been ages since I have made that, the mouth waters.

                      • Re: People never cease to amaze me on the idiocy they can exhibit.
                        Tex Registered Users
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                        Damn, Pam, I'm sorry.  You don't mention this stuff so I had no idea.  Certainly it's hard to stay hydrated when it's coming out of both ends.  Maybe you need to go get an IV just to top off the tank?

                         

                        pammartin wrote:

                         

                        I have lost about 30 lbs in the past 6 weeks and although this fat arse can stand the loss, the reasons behind the event have me stumped.

                         

                        Well, I never lost the weight where I would have chosen.  My ass went from fat to saggy.  Not sure which is worse.

                         

                        I don't know why you'd need to fight with a hospital over your tests and samples but that sucks.  I'm glad you won.  I hope they get everything sent on time and you're able to get a good appointment under your belt.

                         

                        When your docs need nicknames, it's probably time to move on.

                        • Re: People never cease to amaze me on the idiocy they can exhibit.
                          pammartin Registered Users
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                          You are right, I don't say much most times, it is easy to hide, and to pretend.  But only because I have always been such a positive person and the CML demon tries to squash that positive nature constantly.  Other than that, I figure what is the sense in complaining about things I cannot change, wasted air.  I told my husband today in a minor fit I could never do things half assed.  I have to do them full blown, not only do I end up with a disease that is rare, I have to add major depression to the story just for fun.  It was a serious conversation, and he laughed, apologized, then laughed again.  Leave it up to me to screw up a healthy fit by making someone laugh.  I have had IV three times in the last three weeks, last time was Tuesday.  We have calmed the both end loss for the moment but I still seem to be drying up.  I probably should have went in this weekend, it is amazing how better you feel after you have the IV, then the next day is great, and it seems to start downhill from there.  Instead I wasted air and energy with fit throwing.  So non-productive but a character flaw for me (minor confession there).  The BMB slides are to be on their way to Cleveland tomorrow, I will be calling for a tracking number, I do not trust this particular system, it took weeks to get a person on the phone.  I have been seeing a local therapist, he has decided I need to go further so I will see a psychologist July 3, if I want to heal the body as much as possible, the mind has to be on the same level, and it is not.  

                          I can tell you what would be worse for a female at least, a fat saggy ass would be devastating, so you had fat then saggy, that's just gravity.  The only thing I will miss about the docs I have now is their pet names, in the worst of times that was what I always found funny, might be more of that 'exercising the inner brat' syndrome, someone recently told me about.  LOL!  I am proud of my immaturity, I know many people my age who are really old.

                          • Re: People never cease to amaze me on the idiocy they can exhibit.
                            Tex Registered Users
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                            For crying out loud, Pam, ease up on yourself.  No one can be positive all the time.  On the transplant board we talk about staying determined.  You can do that even when you're not feeling particularly positive.  Also, trying to stay positive can expend energy best used elsewhere.

                             

                            Not suggesting you give into the depression and let it control things.  Just don't have unreasonable expectations of yourself.  A cancer dx does not come with a blue unitard and red cape so get over that idea. 

                             

                            Are you still on W&W or are you progressing with treatment?

                            • Re: People never cease to amaze me on the idiocy they can exhibit.
                              pammartin Registered Users
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                              Treatment is going well, is the mind that is screwed up.  I flirted with the idea of stopping the Sprycel, control, oh is just horrible how I want to control the uncontrollable, quality vs. quantity, but it seems most of the things I am working through now have nothing to do with the disease or med, is my head that is askew.  Not the first time nor will prob be the last. 

                              Damn, and here I was waiting for that blue unitard and red cape, although I was a bit apprehensive on how the wood creatures were going to handle the site, I scare them first thing almost every morning by just opening the door.

                              • Re: People never cease to amaze me on the idiocy they can exhibit.
                                Tex Registered Users
                                Currently Being Moderated

                                Well, just cut it the hell out and get your head screwed on straight.

                                 

                                You seem to be doing perfectly well cognitively, so far as I can tell.  Maybe you need to go hit a bucket of balls and name each and every one of them.  Naming bowling pins works wonders, too.

                                • Re: People never cease to amaze me on the idiocy they can exhibit.
                                  pammartin Registered Users
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                                  Cut it out and screw it on straight.  LOL, don't know why but that reminded me of a story.  When I was 12 I heard what I thought was a funny joke, if you wanted to loose about 20 lbs quick just cut your head off.  Not long after my mother was complaining about her weight, said she needed to loose 20 lbs, yep you guessed it,  I told her to cut off her head.  I was banished to the back porch steps for an hour.  hehehehe

                                   

                                  Naming names, that is what I am doing with each and every shovel of that 1b limestone.  They all have names, when I toss them in the cart, and when I level each one out with a nice hard smack of the back side of the shovel. Physical work has always been a great outlet for me to work through stress related issues, that's why I have excess.  In the past few months I have not felt well enough to 'name names'. 

                                   

                                  I am not being overly optimistic yet, but I believe I might be feeling a bit better. We will be headed to see Buffett in concert on Thursday, this is a huge family event that is outrageously expensive and a hell of a lot of fun.  I did not want to go on Sunday, shocking; today I am thinking I need more plastic fruit for my hat.

                                  • Re: People never cease to amaze me on the idiocy they can exhibit.
                                    porciniak Registered Users
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                                    pammartin wrote:

                                     

                                     

                                    I am not being overly optimistic yet, but I believe I might be feeling a bit better. We will be headed to see Buffett in concert on Thursday, this is a huge family event that is outrageously expensive and a hell of a lot of fun.  I did not want to go on Sunday, shocking; today I am thinking I need more plastic fruit for my hat.

                                     

                                    Wonderful!  Should help put your head on straight, lol.

                                     

                                    Just caught up with the conversation and I'm sorry to hear about the dehydration, it's awful.  I've experienced it once or twice and bags of fluid are a godsend.  I so clearly remember feeling too tired to even sit up & called my GP for an 'emergency' appointment, he got me right in and I told him, while laying on the examining table, something I'd never done before, that I needed IV fluids, lol; well, he listened and hooked me right up!!  Wow, it's indescribable, isn't it?

                                     

                                    As Tex mentioned, please don't be hard on yourself, k?  The mind is housed in the body and is a chemical factory all on it's own; when the system is off kilter it's easy to understand that the mind/brain gets off too. 

                                     

                                    Enjoy the concert!

                                  • Re: People never cease to amaze me on the idiocy they can exhibit.
                                    Tex Registered Users
                                    Currently Being Moderated

                                    You know, if he didn't have so many songs I don't like mixed in with the ones I love, I'd be envious.  I do think a Buffett concert (we're talking Jimmy, not Warren, right?) would be a blast.  I've always wanted to go to one.  So party a little for me.

                                     

                                    These ups and downs are very real.  Respect them.  Honor them.  If anyone told you this was a level road, they're freakin' liars.

                                     

                                    Blessings

                                    • Re: People never cease to amaze me on the idiocy they can exhibit.
                                      pammartin Registered Users
                                      Currently Being Moderated

                                      LOL, I don't think there is a Buffett song I do not like.  I still am trying to get to the store for plastic fruit.  At least this year the boy will not be so traumatized by the men in grass skirts and coconut bras.  Last year he either hid or shook his head from side to side, asking..........'Why', I just don't get it, Why?

                                       

                                      I believe my greatest struggle is the ups and downs, with no reasoning between.  Trying to contorl the uncontrollable, one of my worst character flaws.  This latest batch of lows just seems to continue, can't wait for that Cleveland appointment, might not tell me anything different but I believe I will be more comfortable there.  This dehydration hits me like a freight train, one moment I seem to be ok, then a half hour later I am really ill.  Today was no different, I carry water with me, drink continually, but I seem to be burning it up.  Labs are ok, so who the hell knows?  Perhaps the man down yonder is cooking me slowly.

                                      • Re: People never cease to amaze me on the idiocy they can exhibit.
                                        porciniak Registered Users
                                        Currently Being Moderated

                                        Well, I'm envious!  Should be a great time

                                         

                                        When is your appointment in Cleveland?  I do hope they get this fluid balance thing figured out <<hugs>>

                                         

                                        Your control issue reminds me of someone telling me the I enjoy beating my head against brick walls, lol. 

                                        • Re: People never cease to amaze me on the idiocy they can exhibit.
                                          pammartin Registered Users
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                                          Hey!  I enjoy trying to dent brick walls with my head also!   My appointment is the 10th, so right around the corner.  The slides were to be sent yesterday they should be in hand today.  I am ready, just to see someone who I am comfortable with will be a plus, I was not comfortable with the previous doctor from the first visit and it was downhill from there.

                                           

                                          Phins up Phriend!  This afternoon we will be Lounging at the Lagoon.  I am off to look for plastic fruit, that is about the only thing that would drag this fat ass out of bed at 7.

                                      • Re: People never cease to amaze me on the idiocy they can exhibit.
                                        Tex Registered Users
                                        Currently Being Moderated

                                        pammartin wrote:

                                         

                                        Perhaps the man down yonder is cooking me slowly.

                                         

                                        I dunno.  If that's the case, he's cooking the juices out of you.  I always thought he was supposed to be smarter than that.

                                         

                                        You know, I think some of Buffett's songs have just been overplayed over the years.  Have you ever heard his Christmas Island album?  It's one of my favorites (both of Jimmy and of Christmas albums).

                                         

                                        There's a lot in life we can't control.  When we finally learn and accept that fact, life becomes happier.  Or at least, less frustrating.  It's not an easy one to accept, though.  I know.  Trust me, do I know.

                                         

                                        Enjoy the concert and let the island spirit take you to a nicer and more joyous place.

                                         

                                        Blessings

                                        • Re: People never cease to amaze me on the idiocy they can exhibit.
                                          pammartin Registered Users
                                          Currently Being Moderated

                                          Hi,

                                          I should be posting some photos shortly, I have to go out to the car for the camera and after yesterday that seems like an awfully long walk.  I have one photo where the car reads 100 degrees, the air stopped working on my side and we were in traffic 4 miles from the place for over 2 hours.  Pretty much a regular Buffett night.  I have the Christmas Island CD, I really enjoy it, it also one of my favs.  I have 3 of the songs on ring tones around the holiday, I would have more but that is all the offer  .

                                           

                                          Acceptance, it is a struggle of mine, but one that I am aware of, don't they say that is half the battle?  I used to hear my mother say she didn't want to sit down or sleep she was afraid she would never get up.  I am having similar thoughts, but in the opposite direction.  I just want to sit down and not get up, so much easier sometimes.  Not give up sit down, just sit down.  This acceptance is not just for me, nor for everyone around me.  I was the one who would say 'yes', I made it one of my goals to make everyone's life easier, I was the motivator.  Now everyone flounders, they are trying to forge new paths but are still waiting inside to see if I once again pick up the gauntlet and start ruling.  I have no interest or energy for such foolishness anymore.  I told a person the other day I have no more to give right now, I am having a hard enough time trying to figure me out.  I have little to offer the people around me for their difficulties with this disease.  Wow that sounded really selfish, didn't it? Funny, I don't feel guilty. 

                                           

                                          Geez it is noon and the car is still a long way away.........  Those photos might be this evening.

                                          • Re: People never cease to amaze me on the idiocy they can exhibit.
                                            Tex Registered Users
                                            Currently Being Moderated

                                            pammartin wrote:

                                             

                                            Acceptance, it is a struggle of mine, but one that I am aware of, don't they say that is half the battle?

                                             

                                            My experience indicates that's a good rule of thumb but it's not always true.  It's a part of the battle.  Just as significant and of equal value, IMO, is that one really has to want to do something about it.  That's the really big part of the battle.  I've seen it in myself and I've seen it in almost everyone I've ever counseled.

                                             

                                            So what's your favorite song on Christmas Island?  I think the title of mine I "A Sailor's Christmas."  I'm not sure of it but it's the one about the sailor shelving the log book.  When we first got the album we listened to that song half way from Lubbock to Colorado Springs (we were still in OKC at the time).

                                             

                                            If your thoughts about sitting down are selfish, then so am I.  Your job right now is to get on top of this f-ing cancer and beats its ass to the ground.  That's really it.  If you have time/energy to be a mom. you need to do so but your primary job is to get well.  Don't let anyone tell you different.

                                            • Re: People never cease to amaze me on the idiocy they can exhibit.
                                              pammartin Registered Users
                                              Currently Being Moderated

                                              I go back and forth between Christmas Island and Mele Kalikimaka but then if you really just want to do Buffett style you look for the Ho Ho Ho and a Bottle of Rum.  Then when I think about it, Sailor's Christmas may top them all.  I think I might have mentioned there isn't a Buffett song I don't like to some degree, I just have favs over others, and many of them never have received air time over the years.  To find the jewels one has to buy the package, not listen to what someone has deemed a 'seller'.   

                                               

                                              The people around me look for guidance and support it, has always been there and they are a bit lost now that it is not.  I am still here, just not as I was and never will be again.  I figure the acknowledgement they are monsters of my creation is enough, but they are forging ahead, slowly and surely.  Upon reflection, I have to agree with you, admittance is not enough for some situations, having the 'want' to do something about it is key.  I am listening, and learning.

                                               

                                              The one thing I didn't need yesterday was to loose gallons of fluid even though I tried like the dickens to keep hydrated; a long walk, 95+ degree temps, and fatigue damn near kicked my ass.  Today I am a zombie, I have begun lots of projects only to walk away from them shortly after not having the energy or inclination.  Worth it, because it was a day spent together, they seldom happen with schedules and sickness, the new them and me.