Here's what cheezed me off today

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  • Wren44
    Wren44 Member Posts: 8,585
    edited May 2012

    Mac, I think it's the fact that BC is invisible. No crutches, no cast, no visible bandages. My Mom had congestive heart failure and refused to get a handicapped sticker for her car because she didn't look handicapped. People don't realize what BC and treatment take out of you. Maybe a sign saying when the shop will reopen would help?

  • Iz_and_Lys_Mum
    Iz_and_Lys_Mum Member Posts: 126
    edited May 2012

    Sorry to hear about your mum Rohanna. I hope you enjoyed the trip with her.



    I've got one which didnt really cheeze me off, I found it quite funny, but I really felt for the person making the blunder.



    Picture the scene... I came out of hospital on Sunday with a surgical drain still attached. My grandad in laws funeral was on Tuesday. There's no way I was missing it, so I came up with a way of hiding the tubing etc. I did a good job, taping it to me as it came out the top of my dress, attaching it to a lanyard hanging round my neck and stitching my wrap into a kind of pocket so it was all very discrete and hidden. Some of the family know whats been going on, some don't, and I didn't want to make a big thing of it because it just wasn't appropriate.



    So at the wake my hubby has gone to get our car, and I just really needed to sit down for a minute. My MIL's cousin comes over and booms 'When's the big day then?'. Ah, he thinks I'm pregnant under my drain holder scarf. Fair enough. So I said something along the line of, 'Oh no, it's not that'. So he asks me again, 'No no, when is the happy event'. So trying to be discreet and just put him off saying anything else I said, 'Oh, no happy event under here'. Most people would have got the hint I think and changed the subject, but I kid you not, he asked me 5 different ways when I was having the baby, talking increasingly like I was a bit slow, until I finally said 'THERE IS NO BABY I'VE BEEN HAVING TREATMENT FOR BREAST CANCER. I ONLY CAME OUT OF HOSPITAL TWO DAYS AGO AND I HAVE SURGICAL DRAINS UNDERNEATH THIS SCARF'.



    He didn't ask again. I think he may have wanted the floor to swallow him.



    Which just goes to prove, NEVER ask a woman if shes pregnant unless you know for sure :-))).

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2012

    Yep, seems people are clueless about what we are going through and what will hurt our feelings. I've given up trying to educate them because I'm so tired of the deer in the headlights looks. Thank God I have you wonderful ladies to turn to. I LOVE THE TATA WARRIORS!

  • macatacmv
    macatacmv Member Posts: 1,386
    edited May 2012

    wren, I do have a sign up on the shop door saying that I am closed for now and looking forward to a more healthful summer and seeing people then. I also have the phone message for the shop saying the same thing, but people stuff their shoes into the mailbox with a note or leave a message asking if I can have their boots done by June 7th. WTF! Anyway I think most people are just self centered and therefore I keep the ringer turned off most of the time, just check the messages once a week or so. 

    The truth is I have no idea when I will get back to work. I still feel like I am walking thru molasses. 

    Iz and Lys, Some people are just so dense, eh?

    Last Friday night my DD and I were out to dinner with  my 97 yr old aunt and her granddaughter, my DD starts talking about how all her friends are now having babies and I was cringing because I knew the granddaughter had a miscarriage last year, but my DD did not. As I am trying to kick her under the table, the granddaughter brings out a picture of the ultrasound  of her new baby. So it was a happy conversation after all.

  • Iz_and_Lys_Mum
    Iz_and_Lys_Mum Member Posts: 126
    edited May 2012

    Ahh, macatacmv, congrats,on the new baby in the family :-)))



    And I do really believe that most people genuinely dont mean to offend, and the offense taken depends on how close you are to them and how they say things. My best friend can say the same thing as someone I barely know, and my feelings are completely different. You're right about the self centered bit.



    Still, at least it provides us with some laughs! X

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2012

    mac, I had a lady ask me if I would keep her 4 yr. old while she and her hubby go on vacation. I haven't been healthy enough to go on vacation or anything else and she knows it! Then I got an invitation to run a relay. I told them I was still too sick and they said, well you can just do the first 2 miles! I couldn't do the first 2 feet. I don't get it. I just don't get it!

  • macatacmv
    macatacmv Member Posts: 1,386
    edited May 2012

    Iz and Lys, I have to admit that I laugh more now than I ever have, if I wasn't laughing I would (and do)  cry, but the silliest things make me laugh these days. Last week this woman left a message on my shop phone that she heard I liked potato sticks (???) so she left two big cans of potato sticks in the mailbox by the shop door. And when I looked there they were. That is suppose to help me feel better? Anyway I laughed hysterically and still chuckle everytime I think about it. (it's the thought that counts, I know)

    rohanna, I know what you mean! People just don't get it. I have a good friend that tells me to just keep repeating the same thing. Pick a phrase like "I am not feeling well enough right now" and repeat it until the person stops asking, but what I want to do is scream at them and then burst into tears.

    So the Relay for Life is coming up here next month. I have been asked to join many teams, I keep having to say I can barely walk up the stairs to my bedroom. So then they say you have to come do the survior lap, I said I am taking it a day at a time and I'll see. ???? you would think they would get it! They are probably trying to encourage me, but......

  • Wren44
    Wren44 Member Posts: 8,585
    edited May 2012

    Mac and Rohanna, Miss Manners had the perfect phrase published years ago: "I'm afraid that's just impossible." No reasons given so they can't argue. For all they know, you can't because you'll be in Paris (wish wish).

  • Wren44
    Wren44 Member Posts: 8,585
    edited May 2012

    Mac and Rohanna, Miss Manners had the perfect phrase published years ago: "I'm afraid that's just impossible." No reasons given so they can't argue. For all they know, you can't because you'll be in Paris (wish wish).

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited May 2012

    Wren------Paris--a dream. May be next year. DS said he liked London much more than Paris. London he loved the people, Paris--not.

    Mac--what do you do with such stupid people? Signs don't seem to matter.  Take down the maibox? padlock it? Move? Run? (well like Tim Conways little old man run).Sheesh.

  • macatacmv
    macatacmv Member Posts: 1,386
    edited May 2012

    I'm practicing now. "I'm afraid that is just impossible!"

    My idenity is so wrapped up in this job and I am well known in the community since I have done it for so long that I can't get away from people asking.

    So today I managed to miss 2 phone calls. One telling me not to come to PT

    b/c tech is sick, so I showed up anyway, sigh.

    The next one was from MA Gen telling me they have an appt for me, but i'm not sure for what dr or what dept! If they are going to leave a message how about some details?

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited May 2012

    Mac --not like the whole community doesn't know your personal circumstance already, but to just keep on and on after you b/c of their assumptions about you. Even the BC people won't back off. I'm wracking my brain--I do have an idea, but I'll have to do it in a step fashion.

    In your community would you describe that all your customers know you have BC-yes--no?

    In your community would you say it is common knowledge that you have Bc-yes--no?

    Would it bother you if everyone in the community was aware that you had BC -yes--no?

    Is there a community newspaper in your town?-yes--no

    do they do human interest stories?-yes--no?

    Is there a particular person on that newspaper, that everyone reads?yes--no

    My thought is you need to get people to bug out. All action to date hasn't worked. If you feel that now one has any more right to any info about you then the subject is closed.

    But IF YOU FEEL IT'S COMMON KNOWLEDGE NOW, then trying to get the well read writer to write your story. The writer should be able to present the facts and between you and them say ---bug off, in the most beautiful terms as some writers are so good at.

    In our community there is a small town paper that covers two communities. There are two writers--one for each. In my community everyone knows ours. She is the most amazing watchdog for us, on so many matters. If I were in your similar circumstance, I would consider, getting her to write an article. Your article is essentially written by your posts here. You could use each as a talking point with her.

    This may sound way out there, but you have tried so many things and even your own son isn't getting it.  I hope I don't get lambasted by anyone, which I don't think that will happen here. But you have so much stress being put on you, the extreme of trying to get them to listen is 'WHAT DOES IT TAKE". May be this will get others ideas popping up.

    Namaste sheila

  • macatacmv
    macatacmv Member Posts: 1,386
    edited May 2012

    Sas, Thanks so much for thinking about my situation and giving me input. You are right about getting the info "out there". It is already pretty common knowledge, but I live in a resort area and now the "summer" people are arriving. I think I am the one that is dragging my feet about admitting the huge change in my life. I keep thinking I will wake up and be able to breathe and have energy again. I will take your insight into consideration. I am having a MH appt today and we have been discussing this very topic. I know I need to get rid of the stress. I'll keep you posted.

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited May 2012

    good luck Mac-----

    New Body Part Malfunction: musical ear syndrome--auditory hallucination. Risk factors hard of hearing, tinnitus, depressed, lives in quiet environment, can be induced by drugs(no list available). Tinnitus since 1998. Roaring at first then after progressively getting softer over a year(1999) settled into evening crickets. Some times softer than other times. Definitely prefer the crickets to roar.

    Tinnitus changed after surgery. Figured it would settle down in time.

    Today around 8 am. started hearing music while sitting on the deck. Thought it kind of rude to be playing music that early in the morning.  Go inside musics still playing--Duh realize it's in my head. Throw key words musical tinnitus in the computer. I'm a classic case. So, I have crickets on the right, and swing jazz--big band era on the left. Why couldn't it be some beautiful classical piece. May be I can will a station change.

    (A no sleep night-----oh yeah that's a risk factor)

  • macatacmv
    macatacmv Member Posts: 1,386
    edited May 2012

    Sas, I have "crickets" too. Just sounding away in the background all the time. It is a result of working with heavy sanding machines for years, I assume. Have not really ever discussed it with a dr. Sometimes if my bp is up it is more of a roar and much louder, but not often. I, too, am amused and entertained by it. I think it is equally on both sides, but know I have hearing loss in right side, so always have phone on left side.

    Finally got in touch with the hospital last evening and my appt with  pulmonary specialist isn't until June 27th. sigh

    working on new closed sign for shop. Practicing saying no!

    Nancy 

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited May 2012

    mac, here's the link to the site that I felt gave the best info. The way it reads is this is the person that coined the phrase Musical Ear Syndrome versus auditory hallucination. I'm going to C&P it to Fuzzy RR too. Glad you are working on a new sign, and the no. Mac check in with your PCP next visit or cardiologist RE: roar with tinnitus when BP up, they may have a thought on the subject.

    http://www.hearinglosshelp.com/articles/mes.htm

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2012

    Whoa! Musical ear! I keep hearing a high pitched whistle in my right ear. Is this from the BC treatment? This just gets stranger  and stranger!

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited May 2012

    Mac  new article--it's on music "rebooting neurons" . bummer lost it have to go see if I can locate it again.--- yeah, I hadn't closed the window. Many evidence based articles on this site. Based on this article the music rebooted the neurons.

    http://www.medical.hear-it.org/index.dsp?page=18138

    Rohooooo should check in with an Ears/Nose/Throat doc (ENT). Please,,,,,,,,,,,,Drugs can cause tinnitus, ------one sided tinnitus needs to be evaluated by ENT doc

  • macatacmv
    macatacmv Member Posts: 1,386
    edited May 2012

    sas interesting links. I have never thought to talk to a dr about this I just thought I had to learn to live with it. 

    This is what cheesed me off yesterday. I was at PT and had graduated to 3 lb weights, when one of the weights rolls off the bed and lands on my foot. It really caught my little toe. At the time, I was like it's ok, I can move it. we iced it good. The tech who is so nice, was so sorry and upset about me getting hurt that she forgot to get me the green therabands. She wrote up an incident report, but I figure there is not much that can be done for a bruised toe. Today the toe is so purple and sore that I am hobbling around. I am continuing to ice it off and on all day, but jeeze! A small thing, but one more thing!

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited May 2012

    Mac, They should have had you evaluated by a doc, and an xray. Elevation with the icing is best. Once sleep with legs straight up the wall after something similar. Slight bruising and no swelling the next day. -------try as much high elevation as possible over next couple of days.     ----------They are responsible for that toe, anything that goes wrong with it, you have legal rights.

    I was the same about tinnitus, but just as with anything else, progress is being made. Hope I have more music, It "rebooted" my right ear for about 12 hours. It was heaven to have no noise. It's returned in the right ear, but not as loud and left ear is silent.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2012

    Haven't been on for a while because I just lost another childhood friend. She went into the hospital for some procedures for kidney problems and caught a staph infection. She didn't recover. Lately, everything just SUCKS!

  • Rockym
    Rockym Member Posts: 1,261
    edited May 2012
    rohanna, I'm so sorry to hear about your friend.  I know that it hurts and with what we've gone through ourselves, I believe it hurts even more.  I agree, things really do SUCK these days, but I feel for you and hope with some time things get better.
  • Wren44
    Wren44 Member Posts: 8,585
    edited May 2012

    Rohanna, That really does suck big time. I do hope things improve soon for you. I can relate to the book title: Been Down So Long It Looks Like Up to Me. ((((HUGS))))

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited May 2012

    Ro-so sorry for the loss of your friend--------I hate hospital superbugs.  Do you want an intention for her in the St Francis novena?

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2012

    Thanks, everyone. Sorry to be such a Debbie Downer. Sas, I would love to have her included in the St. Francis novena. Do you need me to PM her name to you? I love you guys!!!!!

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited May 2012

    Rohanna--yes please

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited June 2012

    WHERE'D EVERYONE GO?

  • macatacmv
    macatacmv Member Posts: 1,386
    edited June 2012

    hey sas, i've missed you. with your computer problem. I finally got my nebulizer. Saw the pulmonary spec. in boston on a friday. He said he would set up the order for nebulizer with my PCP. He put me on a non narcotic cough suppressant, which suppresses all of me, but at least my cough isn't as bad. Anyway I finally get in to see my PCP on the next friday and he writes the script for the neb meds and says he will fax the order but it wouldn't be that day. So I call the Home Respiratory guy myself the next day and he hears me cough over the phone and says I don't have the order yet, but I'll be right over. He set me right up.  So finally I am getting some meds down into my lungs. The spec and my PCP have not spoken to each other yet so am still waiting to hear what they will come up with. The top dr said he thinks the protective membrane on my bronchi tubes has been stripped away and is not regenerating. I am starting to bring the amount of prednesone I take down a bit each week, so I can get off of it hopefully in a few weeks.

    Anyway,  just thought I would respond to you.

    Maybe everybody just got happy? 

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited July 2012

    Mac Hello... Forgot to ask what meds you were on. The ACE inhibitors are notorious for cough---almost ripped my insides out with the worst offender Lisinopril. Not that the Specialist is wrong, but if other drugs are contributing then, getting them changed could help too. If you post back also PM me, My travels here aren't regular. I forget. Glad you are finally getting some help L&H&P's sas

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2012

    Hey, everyone! Sorry to be AWOL so long! Hope everyone is having a good summer. I've missed you. Carry on, Cheezers!

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