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GRRRRRRRRR I HATE LE..........

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Comments

  • binney4
    binney4 Member Posts: 1,466
    edited July 2011

    BMac, how clever of the two of them!Laughing Do they both speak the same language, or did you have to interpret for them? WHY IS THIS SO DIFFICULT?!!!Yell

    Onward!
    Binney

  • Estepp
    Estepp Member Posts: 2,966
    edited July 2011

    " at least you did not have pancreatic cancer."      OMGOSH!!!!!!!!!!!!!!!!!!!!

    You poor dear.......... you know what....... CANCER IS CANCER IS CANCER........... some live... some do not.... but we all have to fight so hard either way..... I am sorry you were told this by ANYONE. That is cruel IMO. (((((((HUG))))))))

    And as far as  no one taking the time with LE or them not wanting us to talk about it... etc.... I actually am not really sure that they are in " denial" I actually think.............. and pardon my wording if I offend........... but I do not think they GIVE A RATS ASS!

    Just my 02..................................

    Now I feel better............

    Innocent

  • KittyDog
    KittyDog Member Posts: 656
    edited July 2011

    LE SUCKS as does this day.  I had to put my dog to sleep today.  She had a horrible seziure and that told me it was time.  I just didn't know how hard it was going to be.  She was by my side all during my treatments.  I feel like a part of me is gone and I still have to tell my 8 year who is at camp till tomorrow afternoon.  grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr

    Having a grill chesse I have no chocolate.

  • binney4
    binney4 Member Posts: 1,466
    edited July 2011
    Oh, KittyDog, I'm so very sorry.Frown Huge hugs,
    Binney
  • Estepp
    Estepp Member Posts: 2,966
    edited July 2011

    Kitty.......... hard hard hard day sister! Man.,,,,,,,

    I am really sorry too.......((hug))

  • Estel
    Estel Member Posts: 2,780
    edited July 2011

    [[[[[kittydog]]]]] 

  • 3jaysmom
    3jaysmom Member Posts: 2,604
    edited July 2011

    so sorry, Kittydog.....we have them all their lives, and we're there at the end...thats' all we can do. and it IS enough..but so hard!!!tears...3jays

  • lvtwoqlt
    lvtwoqlt Member Posts: 765
    edited July 2011

    (((KittyDog))), I had to put my precious Lady Penelope B. Hound down last year. She was my constant companion while I was recovering from my surgery and treatments in 2007. It was the hardest decision I had to make since my surgery decision. I also had to tell my husband since he was on the road as a trucker and couldn't say good-by to her.

    Sheila 

  • BeckySharp
    BeckySharp Member Posts: 465
    edited July 2011

    Oh KittyDog--Downer day.  I am so sorry.  I had to put mine down when she had seizures too.  It was so hard.  Please keep the good memories you had with yours.  Becky

  • BoobsinaBox
    BoobsinaBox Member Posts: 77
    edited July 2011

    So very sorry, KittyDog.  I've had to do that, and it is wrenching.  Thinking of you and your child.

    Dawn 

  • kira
    kira Member Posts: 659
    edited July 2011

    Kittydog, I'm so sorry, what a huge loss.

    Kira

  • NatsFan
    NatsFan Member Posts: 1,927
    edited July 2011

    Kittydog - I'm so sorry.  No matter how old they are, it still always feels like we didn't get enough time with them.  I'm sure you're familiar with Rainbow Bridge, but just in you are not, case here's a link: http://www.petloss.com/rainbowbridge.htm 

    I'm not a very religious type, but I've always found the thought of Rainbow Bridge comforting.

  • BMac
    BMac Member Posts: 115
    edited July 2011

    KittyDog, I'm so sorry!  That's so sad.  Our pets really do help us through all this stuff, don't they?

    Binney I laughed out loud at your reply to me.  It's funny because when I had my massage last Thursday and Kim recommended a one piece (as had the lymph clinic the week before) I said to her "I wish I could get everyone in the same room to discuss all this."  I was getting different suggestions/opinions from each person and it was very frustrating.

    The interesting thing is that I called the fitter Monday and had a long chat with her.  She called Jobst who said not a good idea try something else (won't go into detail).  I called Kim (Massage therapist) and left a message for her but didn't hear back.  I had to go to her clinic to see someone else about another issue totally unrelated and brought a letter for her outlining what the fitter and Jobst had said.  When I gave her the letter she asked if it was from Brenda (fitter)!  Apparently Brenda had called Kim about another patient, my name came up and Kim explained to her my need for a one piece and how to tailor it to my needs, etc.  Funny how things work out sometimes.

    Now let's hope that the one piece ends up working for me.  This has been going on since end of April (just the part about getting a custom sleeve and glove).

  • KittyDog
    KittyDog Member Posts: 656
    edited July 2011

    Thank You All.  another round of tears.  Today went better than I thought but we all still cried.  She down right asked us at lunch had Lily died yet.  We were trying to wait till we got home.  I just said we would talk about it at home and brought up how much her little doggy missed her.  I think having another dog has helped some. Retail therapy later really helped.  lol  

    I took the time this morning to wash her dog, clip her nails, and trim her hair and put a cute heart bandanna on her.  She love the extra attention I had given her dog.  Lily had been sick for three years but took a downward turn in Feb.   I haven't been able to take time with the other one.  It has been really hard hearing my DD cry and talking it out.  It makes me feel guilty for not waiting till she got home but I know how much it bother me seeing her have this seizure having to clean up all the pee, throw up and poop, that she could not handle seeing her possibly having another one before we could go to the vet.

    Thanks again for listening to me cry and share my feelings.  

    LE is definitely acting up with this heat wave and me being out in it.  I took my sleeve off a little while ago and I even had the impression on the tag on my arm today.  opps I guess eating ham, and chips tonight didn't help but it's comfort food.

    Stay cool and pass the brownies.              

  • KS1
    KS1 Member Posts: 161
    edited July 2011

    KittyDog, I am so very sad for you and your daughter.  It's very strange how sometimes kids figure things out.  When my DH and I had the "cancer conversation" with our kids,  when we said we had something serious to talk about, one of them (who was 9 at the time) said, "you have cancer, don't you."  I dread having to have the conversation that you had with your daughter  so much that, before we got pets, I looked up their average life expectancy to determine how likely they were to die before the kids were out of high school....    KS1

  • KS1
    KS1 Member Posts: 161
    edited July 2011

    A few days ago after being out in the heat/humidity for 8 hours wearing compression garments, I got a bad case of what looked like diaper rash on my LE arm and hand.  I figured if it looks like diaper rash, use diaper cream.  After testing it on a small spot (thanks for suggestion Binney!), I put a thin layer on the whole rash-y area.  Within 4 hours, the raw, angry look was subsiding.  After 36 hours of diaper cream, no day or night garments, and staying indoors, the skin is 99% better.   Simply amazing!  - KS1

  • Estel
    Estel Member Posts: 2,780
    edited July 2011

    KS1 - Earlier this summer I was out a lot in the heat and developed a rash around where the silicone band hits my arm.  Nice little red bumps in little circles all over that arm where the silicone band was.  I stayed very cool that night, put vitamin e on it and by the next day it was almost gone.  Since then I've bought sleeves without the silicone band to wear when it's extremely hot and I haven't had the problem since.  Glad yours is better! 

     JO-5 - Cannot help with the pump just wanted to say that I'm so glad you've found a competent therapist who is helping you!  Are you still taping or is that not for you?  Just wondering. 

  • Suzybelle
    Suzybelle Member Posts: 102
    edited July 2011

    ((((Kitty)))))  I am so sorry.  Sending hugs and prayers to you and your family.

    Jo - I have a flexitouch pump for my right arm and side.  It works.  I mean - really works.  However, you have to be very regular with using it, and it's expensive.  Also, if you don't apply the different garments correctly, it can do more harm than good.  It's also very different from the other pneumatic pumps out there - some of them are actually really bad for LE.

    Check out the flexitouch website - it's a great product.  My insurance paid for the whole thing.

  • kira
    kira Member Posts: 659
    edited July 2011
    1. Jo, pumps are considered an adjunct to "classic" CDT--manual lymph drainage, and bandaging. I'm still not understanding why she's jumping to the pump before teaching you how to bandage.

    Some of the women on this thread have had to fight for the flexi-touch as most insurance policies are written to deny it, and approve cheaper pumps, and pumps can cause fluid to move to places where it shouldn't go.

    Here is Cigna's benefit for lymphedema

    http://www.cigna.com/customer_care/healthcare_professional/coverage_positions/medical/mm_0354_coveragepositioncriteria_lymphedema_pumps_and_sleeves.pdf

    Here's what they say about pumps:

    When provided as the sole treatment modality, lymphedema pumps are generally reserved for patients with intractable lymphedema for whom an adequate trial of more conservative medical treatment has failed. Established conservative medical treatments include the use of bandaging and compression garments, limb elevation, and home exercise programs. 

    She seems to be pushing the pump before going through the basic treatment--and if you try to go through insurance, they're going to want to see that you tried CDT and need a pump ALSO.

    Kira 

     

      
  • cookiegal
    cookiegal Member Posts: 527
    edited July 2011

    Hope everyone is surviving the heat wave. I am actually doing ok...but just kind of scared being outside will make me flare.

  • kira
    kira Member Posts: 659
    edited July 2011

    I am gleefully dog sitting at my daughter's house with central A/C:

    We closed on our former house yesterday and got clobbered emotionally and financially as the current and former real estate attorney messed up the title, and the buyer from hell demanded we--the homeowners who bought the title insurance on it--put a lot of money in escrow to clear the title. I'm reeling. Why did I pay for title insurance, and then be held liable for the title??????? I'm no attorney (my father is) but it makes zero sense to me, and I was told just before the closing--capitulate or the deal is gone.

    We moved the day before in 90 degree heat. 

    And, our new house, the floor guy--who we've trusted previously-- messed up and tried to refinish pre-finished floors: impossible, the result is horrible and the whole place reeks. FYI--leave them alone, or replace them....

    We're sadly proud of the stat's we're racking up: the painter says the worse paint issue he's seen in 30 years , the cable guy says top 5 worst phone wiring, the plasterer says horrible plaster job, electrician is appalled--and we had a thorough inspection--but the location/view is amazing, and that's all DH will focus on.... 

    So, I left DH to the stink and the contractors the the intense obligation of all of this, not to mention camping in our new house as each new disaster unfolds, and ran away to be with my dog and my daughter's dog, and it's blissful. Cool and two dogs, and no smell, and no contractors and no buyers or sellers from hell.

    A bit loopy from the fumes....

    It was 101 at our house yesterday, so we couldn't open the windows: just got headaches and incredibly upset at being jerked around. And, I've been lifting too much.

    Do I have to go back tomorrow?????

    Kira 

  • Estel
    Estel Member Posts: 2,780
    edited July 2011

    Hi Ladies - I have a lament and I can't get it out of my spirit nor my mind so I'll going to write it her.  You don't need to respond ... I just need to get it out.

     Today is my one year foobiversary ... one year ago I got my TE's out and my implants in.  It's the first happy anniversary I've had all year ... I've had tough a series of tough ones and I won't go into that here.  My cousin texted me today and wanted me to call ... said she'd been thinking about me and wanted to talk.  My cousin was a God-send during my diagnosis and treatment.  She let me stay with her for months after my DMX and exchange surgery.  My mother had died a couple of months before my surgery of BC and she was such a blessing.  After I left she got on with her life as most of have found out that our friends and family do.  So many think once the surgeries are over that we can just move on and get on with our life.  I've found it difficult to do so but I'm trying. 

    She doesn't call now, she doesn't check in and I've been hurt by that but I've let it go.  So ... today, being the day that it is, receiving the text... I was excited.  I called her and what did she want to share with me?  She had talked to someone from my church and asked how I was doing and the lady told her that the summer had been tough with the swelling from LE.  My cousin then proceeds to tell me about this diet she's on, no grain, no dairy, fresh fruit, vegetables ... blah, blah, blah ... we've heard it all before.  She wants me to try it and she gave me these testimonials about her friends who've had reduction of pain issues, cure for insomnia.  Ugh.  When I called I asked, "Do you know what this day is?"  She had no idea, she didn't remember.  Not that I expected her to ... but that she would call me on this day and suggest a diet for me to 'cure' my LE when I haven't heard from her in months ... it just irritated me.  I did all the 'right' things and got BC.  I wasn't supposed to get LE either.  Ugh.  Just frustrating.  And I know you ladies understand. 

  • kira
    kira Member Posts: 659
    edited July 2011

    Dawn_Hope, and I'm bitching about a smelly house. That truely stinks. People just don't get it. I have a younger sister who made a huge deal out of my diagnosis, then came to see me for my daughter's wedding, three weeks later and treated me like I was contagious. It hurts, I always thought if something serious ever happened, she'd rise to the occasion.

    Congratulations on your anniversary of your implants, and it stinks when people want us to be normal so badly, that they can't accept the new normal that we live with every day.

    Hugs.

    Kira 

  • KittyDog
    KittyDog Member Posts: 656
    edited July 2011

    hugs Kira and Dawne. 

  • njbhwgirl
    njbhwgirl Member Posts: 59
    edited July 2011

    cookiegal:  I was freaking about our heatwave here on east coast.. Last 4 days I have been in friends and neighbors pools. I swam and did arm excercises... I even went to gym one day and ....lo and behold my arm feels great.....

    I thought for sure my arm would be huge....but surprisingly it is not that swollen...Granted not great but better than I expected...

    Going to Jamaica in 2 weeks. I guess this is a sign I need to do water aerobics in pool each and every day

  • BoobsinaBox
    BoobsinaBox Member Posts: 77
    edited July 2011

    Kira, I am so sorry the move is not going smoothly at all.  Perfect moves are very stressful.  Sounds like this one is horrid.  Thinking of you!

    Dawne-Hope, thinking of you too.  We do understand.

    Dawn 

  • binney4
    binney4 Member Posts: 1,466
    edited July 2011

    Kira, I'm so glad for the dogs and the AC! Don't hurry home tomorrow, give it a much-needed rest.

    Dawne-Hope, big hug to you! What your cousin did (unwittingly) is so painful, and the isolation it creates is enough to knock the wind out of me just thinking about it. And there's just no explaining it to her, either. Hope being able to write it out has eased the sting. As far as that diet goes, got any brownies in the house?

    Hugs,
    Binney

  • binney4
    binney4 Member Posts: 1,466
    edited July 2011

    Suzy, how are you feeling by now? Hope each day's better than the last.

    Gentle hugs,
    Binney

  • cookiegal
    cookiegal Member Posts: 527
    edited July 2011
    Kira...grrrrrrrrr !!!
  • BeckySharp
    BeckySharp Member Posts: 465
    edited July 2011

    Kira--Stay put a few more days.  The refinishing smell isn't going to go away quickly.  Sorry you have had so much difficulty moving, but happy it is over for you.  I know you probably still have a lot of settling in to do ahead of you.

    Dawne--I guess people just don't get it.  I have been stunned by the insensitivity of people.  Luckily my six brothers and sisters  have been totally supportive and check in often.  I have been the anchor person being one of the oldest and I think they feel it is payback time in helping the big sis.  Even my cousins have been great.  It is just my well meaning friends that bug me.  My 89 yr old mother lives with me and she is in total denial that anything has happened.  She has never mentioned the wraps or sleeve.  But it has always been her way of coping.  Makes us all see people differently.

    Cookie--Jamaica?  Vacation?  Sounds interesting.  Take care of yourself before.

    I am hibernating.  Triple digit weather with high, high humidity.  I feel trapped until fall--either AC house, car, church, or office.  And I have always loved the outdoors.  Oh well.  Happy Sunday everyone.  Becky

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