Something profound from the new LE

cookiegal

So I had my appointment on Thursday with the new LE.

She had a lot to say but this really helped me....

She said that when your case does not respond like it's supposed to, medical practitioners can make the patient feel like it's the patient's fault.

That made me feel so much better....I kind of feel like I flunked out with my old LE.

I thought that was worth a new thread.

Now on to my situation....the new LE seemed very informed, trained, and intelligent. A good thing since if I want to have therapy near work during the week the choice is very limited.

She was trained by Lerner, I think?

Anyway she spent at least 90 minutes taking my case history, and did say she had not really seem a case like mine before. She was VERY glad I am going to see Dr. Francis next week.

Now the "bad" news....she too is unsure that the swelling is really LE.

She said there is very little fluid in my swollen arm which is why MLD has not worked so well. She is not ruling it out, but thinks at least part of the issue is all the other frozen shoulder problems, and that could cause the inflammation.(Faith...maybe this is a consideration for you too?)

She also suggested I might want to rule out other inflammatory and connective tissue diseases.

She does favor "preventative" wearing of a sleeve during exercise and labor for people with no LE.

The one down side, she does not fit for sleeves or order them, some odd hospital policy, but we talked about getting one that will not band on my upper arm.

(I need to go back and look at my old threads for this info...I tried on something that looked promising last year at the YSC convention.)

 For now she suggested the underarmour shirt/ isotoners route. 

Anyway....I feel like even though I don't have a firm plan yet, I am moving in the right direction.

Have a great weekend all!!

Binney4

Aw, Cookie, it's worth gold to have your reality affirmed -- good for her! And it sounds like you're on your way to some real answers (finally!!) She does sound very knowledgeable, Cookie.

 

Whew! Onward!

Binney 

faithandfifty

Cookie, I think we should have t-shirts made:

"when your case does not respond like it's supposed to, medical practitioners can make the patient feel like it's the paitent's fault"

I'll start working on the design right away.

Yes, I still wonder about the involvement of my entire shoulder's less than functional capability, being connected to the whole equation.

I'm so glad that you've found someone close-by, who seems informed & is capable of listening.

Yup, Binney, Ever Onward.

What other choice is there??

(Good to see ya, Cooks)

lago

I once had a dermatologist that blamed me for my skin not getting better on the Retin A he prescribed. I fired him and found a doctor that didn't give me something that would irritate my skin.

If the chef only has one recipe then they can't call themselves a chef.

kira66715

Cookie,

  You bad patient, you--not fitting into an easy diagnosis--and frustrating your providers--think of the aggravation you've caused!

   Unfortunately, we'll have to add that tee shirt to the "deny my reality" one we have in stock....

   I am currently dealing with a frozen shoulder: the cast set me up and I discovered I lost all internal rotation, and I'm really concerned as the exercises HURT and I don't want to cause problems in my upper arm. I'm waiting on a PT appointment with a woman who is also trained in LE, and doing some gentle stretches and range of motion until then.

   Who knew that being a difficult case means you're difficult?

Kira

KittyDog

OH my.  I wonder if that is why my arm is also swelling so much.  I have a torn rotator cuff and wearing the sleeve kills it. I still think they have me in a sleeve to tight and what your new LE said makes sense.  Going to quit beating up myself that I am doing the MLD wrong.  Going to go order another bigger sleeve when we get paid.  

Kira sorry your shoulder froze up. Having two I understand. 

 Good Luck Cookie!

Nordy

"when your case does not respond like it's supposed to, medical practitioners can make the patient feel like it's the paitent's fault"

Wow. I love that. It is not only practicioners. I am a trained LE therapist... but like I have said on another thread, don't consider myself to be an expert because I worked acute care and ortho instead. However, it is not only doctors that make us feel bad. I went to a BC support group and the topic was lymphedema. One lady, looked at me and in a shocked but accusatory voice, said, "You are trained in lymphedema and you STILL allowed yourself to get it?" Yeah, because I love it so much. (Rolling my eyes). Needless to say, I didn't say what I really wanted to say... which consisted of a few four letter words and an blunt education on lymphedema... and Oh, I could go on. But for my own sanity, I have not been back to the support group. Even though, there are times I feel like I should go because I know there are newbies needing support... but I don't want to have to smack someone from across the table.. LOLOLOLOL!

Edited - to take off the bold font so it doesn't look like I am yelling! Ooops! 

lago

"You are trained in lymphedema and you STILL allowed yourself to get it?"

You need to post that in:
The dumbest things people have said to you/about you

Binney4

Oooooooooh, Nordy, that just knocks the breath right out of me -- what an awful thing to say! Didn't the moderator intervene? In what sense, exactly, was that a "support" group?!!!

It does amaze me how ignorant even the cancer counselors at cancer centers can be about LE, but I have found them a lot more teachable than the medical folks. If the group moderator is a counselor, maybe make a private appointment with her and see if she's open to learning about the psycho-social realities of living with LE.

Feel better!
Binney

kira66715

Nordy, you didn't activate the "get out of LE" card you received with your training????

What a MORON. Suzy has some great saying about you can't cure dumb. And that was beyond dumb.

Unbelievable--yet all too belivable.

Along those lines, a few of us who work in medicine, have experienced some hostility from co-workers: I treated an OB/Gyn whose partners forced her to take full call while undergoing chemo--and I came up against a male colleague who was furious at me and told me he "knew what it was like to have breast cancer"--in medicine, there's them--the patients, and us--the professionals who NEVER get sick and when that line crosses, there can be nastiness.

There are women who come onto this thread and with dripping pity tell us how much they admire us, but thank goodness, aren't one of the club. We're the club no one wants to join, and their fear and ignorance will come out in absolutely idiotic statements like that woman said to you.

Kira

Nordy

Thanks you guys! I knew YOU all would understand that... 

cookiegal

So I injured my good arm...grrrrrr.....

I've always been worried that carrying everything on that side would cause a problem and here it is.

I am like I was after surgery...I can barely carry my purse.

Sigh.

The good news..all my records made it to Dr. Francis for Monday. I so hope she can help me.

I see the new LE again next Friday. I bought the isotoner glove, now I just need the underarmor shirt.(BTW the gloves are 66% off at Macys!)

(Yea new LE, she is seeing me on a day she normally does not see outpatients.)

 Have a great weekend!!

kira66715

Cookie!!!!

That rots!!

Is it something you can get help for, quickly? Is the new LE a PT?

Hope it gets better soon: we're so vulnerable and we do need our arms and hands to function well.

Kira--sending healing hugs, and hoping for a good visit with Dr. Francis, and some answers.

cookiegal

Thanks Kira. It's really scary because I sometimes have to carry stuff at work. The new LE is a PT, also I learned some stuff to help in my months of OT.

Here is the funny thing...(well kind of funny)...I woke up this morning and my good arm and hand were way more swollen than my LE side. So I hope Dr. Francis isn't too big on comparing the two.

The pain I have on the B9 side is somewhat similar to the pain that I have had for months on the cancer side.

Any suggestions on which underarmor to buy? They had their pop up shop near our NYC place last month, I wish I had gone.

Oh and Nordy posted about those LE sleeves I want to try.

 Thanks!!!!

cookiegal

 Kira I just realized how witty this was....

Nordy, you didn't activate the "get out of LE" card you received with your training????

kira66715

Cookie, Binney is the underarmour person--I think you'd want a long sleeved one that is snug. I wish I knew the style.

What the heck is going on with your good side--pain and swelling? That stinks. 

And what lousy timing--although no time would be good.

Hope it settles down quickly.

I just finished hand OT, and discovered that the shoulder pain I developed while in the cast is complete loss of internal rotation--so now I start PT....

Kira

cookiegal

I got my underarmor shirt today....hmmm the bottom part of the arm is kind of loose but the upper part is tight. At least I can show it to Dr. F tomorrow, see what she thinks.

Hope all y'all are having a good weekend. Tonight is my (belated) birthday party!

kira66715

Happy belated birthday!!

Have a great celebration: best wishes for a happy, healthy and wonderful year.

Kira

Leah_S

Happy Birthday to you

Happy Birthday to you

Happy Birthday, dear Cookiegal

Happy Birthday to you.

 

Even though you are "Cookiegal" you're allowed birthday cake!

 

Have a wonderful year.

Leah

BoobsinaBox

Kira,

Isn't it just one thing after another?  PT for the cast-induced problem in your shoulder.  Wouldn't it be nice if one fix didn't create another problem?  Thinking of you and hoping the PT will help quickly!

Dawn 

kira66715

Dawn, it gets so OLD--I kind of rebelled this weekend and laid off all the MLD, exercises, hand exercises--I spend so much time on self care, it's ridiculous.

I had gone to a PT at the center for Pilates---it wasn't official PT and she's the one who pointed out that I couldn't internally rotate my shoulder--but she didn't care! So, I called my PCP, got  a referral to the PT who has some LE training, and told the one who does Pilates that it's on hold.

Always something...I keep thinking about that fateful trip--and it's solid ice and snow around here now, and I'm so careful.

Kira

BoobsinaBox

Kira,

I hear you.  We're about to get ice followed by snow, and I just stay inside.  Thank goodness I don't have to go out.  You be careful, and good luck with the new PT.

Dawn 

Anonymous

Happy Birthday, Cookie, and good luck with your appt!

cookiegal

Thanks for all the birthday wishes. I am pleased to report that we had a MAGNIFICENT cake. One of the top 5 cakes I have ever had. Coconut-lemon curd with the fluffiest white frosting ever. Mmm...tasted good after Mexican food.

I am nervous about tommorow....both the logistics of getting to far suburban NJ, and worried she will look at me and say that's not lymphedema and I will be left with no answers.

Thanks for all the support....cheers!

hymil

She might say it's something that could be cured, that you don't have to live with the rest of your life, now That would be good news!

cookiegal

hi.....appointment went pretty well.

I am in for some full fleged LE treatment.

She says there is another problem there, something inflammitory, but there is at least some amount of LE and that's what we can treat.

So anyhow I will have plenty of questions in the weeks ahead about night sleeves and wrapping and so forth.

I think I am going to get the across the back shrug sleeves and then wear something adjustable over that if I need more compression.

She also said my LE was more "fatty" than fluid, so I should take losing weight seriously.

I'm kind of on the run trying to beat the storm but will write more soon.

Thanks for all the support.

(taking a break from cookies) Cookiegal

kira66715

Cookie, I've been crossing my fingers all day that it went well--"pretty well" sounds like a few qualifications--but I'm glad overall it was positive.

These storms are INSANE. We're due to get another one tomorrow--the streets around here have become cow paths, with huge snow banks. My daughter's school district has cancelled so many days that they're teaching into July, and working on the April holiday week. Who knew public school teachers don't get paid for snow days?

So, Dr Francis thinks there's some lipedema/lipoedema involved as well? I just read the lymphadema people page on it, and I guess it can occur in the arms without lower extremity involvement.

Be safe.

Kira

hymil

Bad news about having to lose weight, Cookie-free-Gal Still you got a diagnosis and the treatment plan now and inflammation is also something that can be treated. I will help you deal with the excess cookies!

Binney4

Carrotgal, I am so relieved that there's finally a plan in place to take care of you. But I still ache for all you've gone through and that a simple round of antibiotics didn't just fix it once and for all.

As for losing weight - . I'm slowly chipping away too, and I can at least tell you that, challenging as it is, it sure does help with the LE. Even a few pounds make a difference for me.

It'll be good!
Binney

cookiegal

So here is a question. I thought new LE said you don't put compression on a swollen arm.

Could this be right???

I tried the underarmor and isotoner last night and was much more swollen when I took it off.

The good news is my arm is almost always less swollen after I sleep. 

I see the new LE on Friday, and hopefully I will figure things out. 

I'll be honest, I understood cancer better than this!!!!

kira66715

Cookie, there are basic theories, and then there is individual response--not all women swell at night and if you normally get better at night, with no compression, and compression made you worse--sounds like it's not helpful to you.

We all need to adapt the "rules" to our own individual response.

And your situation is confusing--which adds to the complexity.

It's okay to use compression on a swollen arm, if 1) it's not infected, 2) the compression doesn't constrict or over-compress and 3) you've done MLD to clear the area--at least that's my understanding, which could be wrong.

LE is unpredictable in so many ways, and that's just one of the reasons it's so hard.

Kira