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

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  • Vargadoll
    Vargadoll Member Posts: 2,028
    edited September 2018

    Shelia- I was diagnosed in March 2017 so I'm still pretty new at this to. I have learned so much from the ladies on this thread and other threads on here. I have a constant issue with cording. My swelling has not been to bad. I have truncal LE also. My boob is te worst! I have to wear a compression bra and swell spot wrap everyday. My affected side is my dominant hand. This has been a challenge as I've discovered I am very right-handed! I've had to learn to do lots of things with my left hand like carrying groceries for instance, when I'm working in the yard I always try to use my left hand which is so awkward but I'm learning and most importantly when I reach for things I use my left hand and if I'm petting an animal I don't know I always use my left hand. I've had cellulitis twice and a bacterial infection once and they're not fun! I was told no more than 10 lb with the affected side which is hard for me because I can lift 106 lb like nobody's business!(I have an adult multiple e handicapped child who only walks with assistance she weighs 106 LOL) I have six grandchildren the two little ones are three and a half and 18 months I just make sure I always pick them up and carry them on my left side not my right. It's a balancing act you'll figure it out there's lots of support here. I'll see if I can bump the threads I follow too active. I wished I had found them earlier cuz they have been a huge help! As far as rapping I've never been rap so I'm no help there. I can tell you other little things I do just to prevent an injury to my hand I always wear gloves when working in the yard fit gloves at that! In the kitchen I always use the Disposable gloves like the cafeteria workers use at school LOL. Especially when handling meat, I learned that one a little too late and had small cut in my finger and I'm convinced that's where my first round of cellulitis came from, handling raw meat without a glove. I also wear a glove when pumping gas you never know what's on the gas pump handle! I'm extra careful with knives and about a slicing machine so I don't have to use my grster anymore!

  • sheila888
    sheila888 Member Posts: 25,634
    edited September 2018

    vargadoll.....thank you so much for answering some of my stupid questions.

    Do you take precautions all the time ?

    It must be hard..I'm also a very independent person I'd like to do everything myself .

    If you can explain handling the raw meat with a disposable gloves not sure why?

    Thanks so much

    Sheila

  • Vargadoll
    Vargadoll Member Posts: 2,028
    edited September 2018

    Shelia - I am a do it my own damn self girl! The meat has bacteria so if you have an open wound or even just a torn cuticle the bacteria can sneak in there. Sometimes I even wear the gloves handling vegetables. And yes 110% of the time I am aware of my lymphedema! It took me getting stung twice in the swimming pool reaching for a float with my right hand that changed my way of thinking! That's why I reach for everything with my left hand now. I have been on antibiotics more times this past year than I have in my entire 53 years of life! If I stay on top of the LE and use caution I can try to avoid cellulitis or a bacterial infection. The part I hate most is not being able to lfit heavy things. I'm really strong and hate having limits. I bumped a bunch of theads for you. Just look in the active topic section.

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited September 2018

    Sheila: Below is a wonderful web site that a number of our BCO members were involved in creating. You'll probably find lots of answers there. Other than that, I pretty much read through a couple of LE threads on this site and looked at everyone's past questions. Yes - it's every day for the rest of your life. If you can keep it under control, it's much easier than dealing with flares. Most important is to advocate for yourself and find a well trained LEPT.

    https://stepup-speakout.org/

  • Vargadoll
    Vargadoll Member Posts: 2,028
    edited September 2018

    Thank you for sharing the link Minus Two! I forgot to mention it! That's the first place to look!

  • sheila888
    sheila888 Member Posts: 25,634
    edited September 2018

    Thank you my friends...I will check everything after grandchildren go home.

    Big Hugs I really appreciated it.

    Sheila ๐Ÿ’›

  • sheila888
    sheila888 Member Posts: 25,634
    edited September 2018

    Thank you my friends...I will check everything after grandchildren go home.

    Big Hugs I really appreciated it.

    Sheila ๐Ÿ’›

  • Vargadoll
    Vargadoll Member Posts: 2,028
    edited September 2018

    YES!A Everything Joanne said!

  • sheila888
    sheila888 Member Posts: 25,634
    edited September 2018

    Joanne that looks easy wrapping will be little difficult .

    Tuesday I see LE Therapist

    Monday I see the hand surgeon

    What a coincidence 2 different things going on in the same arm.

    I checked the link quickly it seems is very easy to follow especially with my questions.

    I update you Tuesday evening.

    Thank you again my BCO Sisters for being there for me.

    Sheila ๐Ÿ’›

  • sheila888
    sheila888 Member Posts: 25,634
    edited September 2018

    Joanne I'm not having surgery that's the last resort.the numb area has also an inflammation so they can't do any PT until inflammation goes down.

    I took anti inflammatory pills for a month but no help. The condition is called not carpal tunnel syndrome but I don't remember the name now. I had an MRI AND that electric test whatever it's called.

    First things first...I saw the surgeon 6 weeks ago this is a follow up......it's pain in a neck .

    But you know what it's okay it's not the beast so I can deal with it. But it's very annoying not to have my full independency.

    Sheila ๐Ÿ’›

  • sheila888
    sheila888 Member Posts: 25,634
    edited September 2018

    cubital tunnel syndrome ulnar nerve is what I have.

    And I had a EMG for it

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited September 2018

    Thank you Varga for bumping all the other great threads. They're in my favorites but I forget about them.

  • sheila888
    sheila888 Member Posts: 25,634
    edited September 2018

    Thanks Varga I'm trying to read most LE threads. I just saw you bumped it for me.๐Ÿ˜„

    Sheila

  • SheliaMarie
    SheliaMarie Member Posts: 302
    edited September 2018

    When I was wrapping, the first day was the tightest and it was never uncomfortable. After a day or two it loosens up as the swelling goes down... thatโ€™s when it got super annoying. But never uncomfortable. The only drawback for me was it was cumbersome.

  • SheliaMarie
    SheliaMarie Member Posts: 302
    edited September 2018

    The circaid is adjustable to your comfort / need. The main thing to remember is to keep the wrist the tightest, next strap up a bit looser, next one a bit looser (never really loose though). This keeps the fluid pushed in the correct direction. Hope that makes sense.

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited September 2018

    Grrrrrr - I can't believe that some doc can just say no to having a consult with another doc. Jo - with the problem continuing this long I absolutely don't see why you shouldn't see a dermatologist. Why wouldn't he/she want to explore every avenue? Grrrrr.

  • sheila888
    sheila888 Member Posts: 25,634
    edited September 2018

    Hi everybody. My arm needs to be wrapped but I wasn't aware of that I had to get my own supplies.

    Last she massaged it and it's Stage 1 lymphedema. Thank god I don't have to do any wrappings.

    I'm gonna have PT twice a week and she's gonna unwrap and wrap again with the clean ones. That's why everything has to be purchased in 2s...

    Jo if you don't need a referral go see your own dermatologist. Nobody will know. Why they make everything complicated.

    Sheila

  • sheila888
    sheila888 Member Posts: 25,634
    edited September 2018

    Joanne there is financial assistance income base by many cancer support group. I found out last nigh. I applied.

    When I said no wrappings for me I meant I don't have to do it myself.

    Lymphedema therapist will do it when I go twice a week.

    May I ask why they wanna do a biopsy ?

    Good luck Jo this whole thing is very annoying but we get through it Right?

    Sheila

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited September 2018

    Jo - I see my derm doc every 6 months for a full body exam and she is very hesitant to biopsy anything. And that's when she has known me through 6 basal cell cancers & sent me to the MOHS surgeon for each. She does seem to do a good job of monitoring what could be a problem & what not to worry about, but she's not big on cutting right away. That said, I do know all docs all different

    Meant to add, my son is on an HMO plan that recently cut derm benefits. They want the PCP to make the call. That doesn't cut it for families that have had several skin cancers. Thank heavens he is smart enough to pay out of pocket to go to someone out of network once a year, and then has to force his PCP to send him to a derm doc in network for treatment based on those reports.

  • Binney4
    Binney4 Member Posts: 8,609
    edited September 2018

    Jo, pain increases lymph flow to the area, so you don't want to do pain. As far as I can see, wrapping of any sort is inconvenient, but it should NOT be painful. If the Circaid allows you greater flexibility to "fix" a painful application, then that could be a serious advantage. I did have an earlier kind of Circaid that was sort of painful at the elbow when bending it, but presumably they've fixed that issue by now. I do the traditional wrapping with bandages as needed, but over time I've learned how to do it so it works for me. I also use my night garment during the day sometimes when I'm flaring, but that's really inconvenient because I can't use that hand for much of anything. It does bring the swelling down quickly, though, and the extra support it provides is generally comforting.

    Hope that helps some. Like you, I can't stand wasting so much money on stuff I can't use. I don't get why unused items can't be passed on? Maybe because insurance frowns on that? Or if they're prescription items they're not supposed to used by anyone else? Wash them, for sure, before passing them on, but why would anybody just toss them?!!

    This whole discussion of wrapping reminds me: if any of you have learned to wrap, it's a good idea to wrap at least once a month so you remember how to do it. There is nothing more FRUSTRATING! than to have a lousy flare and try to wrap, only to discover you've forgotten what order or direction to wrap in. Just a thought!

    Hugs,
    Binney

  • Vargadoll
    Vargadoll Member Posts: 2,028
    edited September 2018

    I get so annoyed that you are not allowed to donate things paid for by Medicaid or Medicare! My parents live next to a nursing home and you should see the things they put in the dumpster! Wheelchairs, walkers, bath chairs and so much more! I am surprised that the Goodwill, Salvation Army and thrift stores will still take medical equipment like that if it's donated. You would think that durable medical equipment that Medicaid/ Medicare has paid for could go to a special donation closet and they would pull from that instead of just being wasteful!

    Joanne and Sheila hope you both are doing well! I see my PT on Saturday

  • sheila888
    sheila888 Member Posts: 25,634
    edited September 2018

    you can privately donate to people who need them....nursing homes..hospitals they don't take it.

    I remember a while ago someone on BCO posted about that she was giving away some stuff

    Ask the Moderators after all you're donating not making money

  • Vargadoll
    Vargadoll Member Posts: 2,028
    edited September 2018

    exactly Shelia!

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited September 2018

    Doctors Without Borders will take a lot of things. That's where we donated wheel chairs & walkers & etc. after my Dad died. They do such wonderful things around the world.

  • Vargadoll
    Vargadoll Member Posts: 2,028
    edited September 2018

    I am just here to complain today! Saw my amazing PT this morning. I asked her what grade by LE was because I have never been told. This PT was 5th one so she came in late in the game. She's always so surprised at what was left out of my care right out of the gate. So I found out today I'm stage 2! And here I thought I barely had lymphedema! My trunk is the worst and has been the entire time. It was just another eye-opening day in the BC Journey

  • hugz4u
    hugz4u Member Posts: 2,781
    edited September 2018

    Varga I was told I have stage one in hand and 2 in arm. I never thought they stage that way but yup they can. My trunk and breast are probably 2 and bother me the most.

    Jo so it was you that wears gloves for meat handling. Since reading that long time agoI have also and recommended many here to do the same. Thx I would have never thought of it!

  • Vargadoll
    Vargadoll Member Posts: 2,028
    edited September 2018

    I guess in was in a bit of denial. The BC was nothing compared to a life time of LE

  • sheila888
    sheila888 Member Posts: 25,634
    edited September 2018

    hugz4u..I didn't even know you could get it in your hands. I wonder I have that.

    This is so new for me.PT SAID THIS WAS brewing for a long time and if I felt anything..No I didn't .

    Varga I understand your frustration for me cancer was the worst twice and 2 different primary ones.

    Jo and u burned my finger was thinking of you

    Hugs

  • Binney4
    Binney4 Member Posts: 8,609
    edited September 2018

    Joanne, what a relief it is to know you are finally in good hands, and especially that she's a real teacher, giving you the "tools" you need to keep everything in control (or to get it back in control when there's a problem). Finding her is definitely the silver lining to this whole ordeal.

    Brava!
    Binney

  • sheila888
    sheila888 Member Posts: 25,634
    edited September 2018

    Hi Jo...I was also wrapped today the first-time Massage feels good

    My arm feels like I have a cast on very heavy.

    I'm glad you found the right therapist and connected with her......


    The important thing is we're taking care of for a healthier arm.

    I have an itch and can't scratch it ๐Ÿ˜๐Ÿ˜๐Ÿ˜๐Ÿ˜๐Ÿ˜

    Hi Binney...

    Hugs

    Sheila

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