GRRRRRRRRR I HATE LE..........
Comments
-
Well can I add to all the frustration and drama???? Venting party!!!!! fun fun fun...N/O/T/
My LE therapy was fine - he did work on the scar tissue until I said enough! Glad I took that tylenol and cream with me.. We talked about ordering a sleeve as a precaution... I have an old surgery elbow scar that has possibly started to pool fluid... Great... makes this a little more urgent but he worked on that too.. He is having me go to order the gauntlet and sleeve...does anyone know a good place online I could give the measurements to? - he thinks I could use just a ready made sleeve...but the one in town is real spendy...
Then............
I went off to my eye appt to talk about the dry eye and cornea scratches... The dry eye keeps on scratching the corneas - They did all the preliminary stuff then the doc was backed up --- 1.5 later he sees me -
-We have the "I can't afford the restasis" talk (there also is a possibilty with my antibiotic allergies I'm allergic to it),
-Then he tells me we could also try tetracycline to thin out the oils in the eyes (what part of antibiotic allergy doesn't he get???)
and he says we could do punctal plugs.. Try 4 disolvable ones first and if your eyes get better put permanent ones in... The idea is to plug the drain so that the tears stay in my eyes longer.. It looks like my only other option at the moment - so I agreed.. They disolve in 7-10 days so I will see him after that time... until now, I didn't think to ask him how much he charged me - great...Its probably more than the drops would have cost me
.Edit: Ducky and Granny get another cup out - I'm coming over!
0 -
Welcome GMA.................huge venting party...........................the LE therapist said to me today ..........................."you have a lot of accumulated fluid"........................I thought "no shit Sherlock", that didn't take much thought.............................I have enough frigging fluid in this pathetic body to float the Battleship New Jersey................................
Just want the bullshit to be over.............................damn, where did I put that Vodka........
0 -
Can I join you? I want to drink AND smoke. Of course, what I want and what I will do are not necessarily the same. Sigh.
0 -
GMA. so I was battling with the dry eye for 25 years. 2 weeks ago I got 2 plugs, permanent placed 150 dollars out of my pocket . 4 days later one fell out and they were so nice to charge me 50 instead of 75. Guess what another 4 days the same one fell out,grrrrr. So I said, Doc, I can't be payin for this every 4 days!.... Ok, I will cauterize them for you.
So after 200 bucks he solves my problem. grrr. Why didn't he offer me this in the first place.grrrrrr. There goes some of my sleeve money! Double grrrr. I would go straight to cauterization and save yourself a bundle in the end. I am going to try 2 and see how this goes. ( I'd like to leave 2 open out of the 4 so the eye can clean itself and drain.
Oh the restatsis was awful. 270 bucks (covered for that) I was on it for a week and it made my eyes drier. Oh they say no side affects. bolonge! Tonight. I am going to try coconut oil in my eyes before I sleep. Cheap and I heard it works! I am sure the cancer treatment 6 years ago made this condition worse!
I don't know the solo red cup joke but I want in on it!
0 -
New doctors - I'm interviewing various specialists in Chicago, now that we are here. I had high hopes for a particular primary for me. She was up on just about everything and willing to help for many other things. I asked her about foot bloodwork, and if her office draws labs. She told me I'd have to go to the related hospital for that, since Quest won't do it. On her own, she called the hospital lab and spoke to their phlebotomy manager (St Joseph). The mgr gave the doctor a long shpiel about how they don't need to do feet, that they can use arms as long as there is no tourniquet. I asked the doctor what they do with a patient whose arms are amputated......silence. Anyway, she was frustrated that she cannot work around this issue. And I'm frustrated that I really liked her, but probably cannot manage to work within that St Joseph's system all because of a footdraw.
0 -
hugz - Yes, The one month script for restasis is $270 at Costco too - i told doc if he paid for it I would try a little longer - he winst and then told me about the temp plugs to see if it works - my eyes hurt this morning..
Kcshreve - I can't believe some of the lab ppl... for ours to use feet you have to have it drawn in the hospital emergency - I don't know why, when usually its the same tech that does it? Here's to a better plan.. there is a better place you should be...I know God seemed to get me practioners in town when I have been actually referred out of town.. Overall, they are good docs but I do have to fight for what I want sometimes...
0 -
Hugz4u..................Red Solo Cup is our drinking cup................................You know the one...........everyone has them...................Google Red Solo Cup song ................you will hear it..................then come back, bring your Red Solo Cup....................we will fill you up......................and...........We'll have a party...................let's have a party............................come on ladies..............................you all know the words................hahahahahahaha...........................
0 -
Sounds like there are a lot of hangovers today!
Ducky--I am so hoping for you that your new appointment will go well and you will have a good therapist from here on out.
KC-I just had a foot draw two weeks ago and cannot figure out what the big deal is about not doing it. The lab did have to call my PCP for permission but he readily gave it. I have blood work done every six months so he wrote a standing order for the lab to do a foot draw if necessary. When they could not get blood out of my unaffected arm there was never any mention of trying my affected arm which had a sleeve and gauntlet on it. They seemed to understand LE.
0 -
Red solo cup song: not sure this is allowed but here it is :
http://www.youtube.com/watch?v=-yTo73qYo48 - caution: there are some phrases that could be @#$#@$, so if you are easily offended don't listen.0 -
GMA, That is a really cute song. Yah I kinda figured out that it had to do with a "wee bit of the drink."
Why would your doc put in disolvable plugs? It sounds like you have had dry eyes for a while and need the problem solved for good.grrrr The permanent ones can be rubbed out anyway. grrrr. I think that is what happened to me.
Coconut oil update. My eyes are a bit fuzzy this morn. I think the oil is still in there. I did have improvement. Going to try it a couple nights. By the way, some of thoe eye drops have olive oil as an ingredient and I told my doc I was going to try that to. He thought that would be ok but was wanting the oil to be sterile. Run it past your doc.
Today I am trying a gauntlet, going to see what happpens. Now that I am becoming the wrapping master. I can always wrap if I swell a bit in the hand.
All those that are discouraged due to LE woes. grrrrr.We are on board with you. Keep on trying and we will solve the problem together!
0 -
GmaFoley- Thanks for sharing the song! Too funny! Going to have that one stuck in my head today!
I got a call from the hospital yesterday after they reviewed my charges for my LE treatment. They're not budging and said everything is in order so there went $800 on my credit card. Is it too early for me to get my red plastic cup out?
0 -
Well here goes...I too worked hard and found a place that has LANA certified PT..and i got an appt.for next tues.finally.
GmaFwhat did the therapist do for the pooling near the elbow.thats what i have.i would like to do something before i go on tues cause its only for an evaluation.
We have lots of red solo cups.Ducky keeps the supply along with the vodka.
Dunsleeper bring what ya wanna bring.I dont drink Vodka BUT.......
And Kate-its never too early for the red solo cup.
EVERYONE IS INVITED....
0 -
seriously reading this I am ready for a million sleeve march on Washington!
I feel almost guilty that I have good garments and a good therapist.
All I can say ducky is maybe you should come to NYC and go to Falk for your stuff if your insurance will take it.
The one place I went outside of the city was a NIGHTMARE!
0 -
Hey Cookiegal....I along with other sistas have been tryin to get Ducky to come to NYC for quite some time...maybe you can convince her...I sure cannot....NYC has everything...ya know what they say If you cannot find it in NY you will not find it anywhere.0
-
Reading this thread makes me so angry sometimes because over and over again I read about our concerns being minimized, about being given slipshod fittings on garments (when we can even get garments), the whole thing about the over-reliance on arm measurements for dx, being given therapy or exercises by inadequately trained therapists that bring on or worsen our LE, and more frighteningly, about being given incomplete or inaccurate information like there's no need for precautions, LE never starts in the hand, none of my patients ever get LE, there's no LE risk with SNB, there's no such thing as breast or truncal LE without arm swelling, etc. etc. Add to that the frustrating shortage of good LE therapists - as we all know it can take weeks or even months to get an appointment sometimes, and I know some ladies here have had to drive tremendous distances to find a competent LE therapist or have to pay exhorbitant out of pocket fees for therapy or garments.
In so many ways feel like we've been abandoned by the medical community. In no way should patients have to take on as much responsibility for getting properly diagnosed and getting proper care as we do - and yet that seems to be the lot of those of us with LE. Thank heavens for this forum and our own wonderful Binney and Kira. What in the world do people do who are not internet savvy and can't access this wonderful source of knowledge and encouragment?
I'm ready to join your Million Sleeve March, Cookie!!
0 -
And as bad as we have it, those with lower extremity LE from gyne or prostate surgeries, LE from melanoma, or primary LE (born with a deficient lymph system so the LE shows up anywhere from birth to middle age) have it far worse. Many of those patients wait decades for a diagnosis, so their LE is far advanced before they even have a name for their condition--by which time they have extensive debilitating fibrosis, multiple infections, unhealing wounds, and leaking caustic lymph fluid. And none of these people have even so much as the "protection" of the Women's Health and Cancer Rights Act to help them appeal for care (it applies only to those of us with breast cancer). In the U.S. many insurance companies don't even recognize any LE except that related to breast cancer, and in Canada only those with bc qualify for LE care--therapists there have to turn away other patients, no matter how advanced their condition.
Can they all join the march too, Cookie?! Make that two million!
Binney0 -
I got lucky today.Called this hospital that has a huge PT wing along with a few LE/Edema therapists.Now I gotta hope that they know what they are doing.My appt.is June 26th.That is just for the evaluation.Wish me luck.
IM IN FOR THE 2 MILLION MARCH!!!!!!!!!!!!
A while back there was a thread about sending a letter to the president asking for more funding for BC.over 1000 letters went out.I got a response sayin we are tryin....Im sure that wouldnt hurt.all you need is the people.The squeeky wheel gets the grease.
0 -
Well ladies, I got it all settled...............called my PCP, and he is sending over the paperwork for my switch ......called my MO, and she is having all the LE paperwork transferred, and the appt. is made...............I am so happy......I hope this one turns out positive.............I have a good feeling
Not that my other LE person wasn't great, she just wasn't easy to get an appt with, and again it was only 3 days a week, not enough days.................................plus I have my grandchildren I take care of since they are out of school, so that again limits me.
This is going to work out, I'm sure ..............I have a good feeling, and for me that doesn't happen too often.......................lol
0 -
KC--I'd hate to see you not be able to use the PCP who you like and who called the phlebotomist for you. I would think that a push to hospital administration, the pathologists who oversee the phlebotomists, the threat of going public with the fact that they won't accomodate a reasonable request from a patient might persuade them. The lab shouldn't be able to interfere with the doctor/patient relationship.
Kindergarten just left Chicago, and had a good LE therapist, FYI
Mary: we shouldn't have to fight this hard to get care, and yes, the people with primary LE get worse care than we do, but it's not a zero sum game--their suffering doesn't negate ours.
I did see horrible pictures of primary LE, legs, in Canada, where apparently it's not covered, and Anna Towers MD, head of the Canadian Lymphedema Framework Project, said "This should not be happening in a developed country."
But, our fight is real and frustrating and exhausting.
But I'm up for the march!
Kira
0 -
Hugz - Doc put temp plugs in to see if the worked for me.. I guess some people react and get infections in the eye - being my corneas have been scratched we take on step at a time... If the temps work then he will put the permanent ones in...
I am tired.....I don't know how long I can put 46 hours in a week between 2 jobs... and everyone that has insurance to pay for all you supplies - I'm happy for you.. really ... I don't know How or if one company is better at working with you on a payment plan, but we don't have insurance, as such, and I have to pay out of an empty pocket or charge it... My cards are almost maxed again and we just refied the house... the tax man has come after us for our taxes this year - we owe about 10k and the threatened to garnish our wages if we don't use their payment plan - there minumum for monthly was too much for our budget... I need a sleeve.... therapist gave me my measurement ... i don't know what I'm going to do... any suggestions are appreciated.
PS: the reason we owe IRS so much is because we had to draw out all our IRA to survive.. they see it as capitol gain..
0 -
GMA. You deserve a giant hug for all that work you do. It's not much but just to let you know that I can see you are a hard worker trying to at least get a bit ahead.
Dang IRS! My brother in law never earned a penny in the states but after he applied and got his dual citizenship (as his Mom was born there but they moved to Canada) IRS made him to file and he never did make a penny in the USA. Cancer took his life, 6 years later, the IRS decided to try and collect some kind of money(taxes?) on him. (yup, he was dead) My sis tried to untye this knot and it just caused her grief. IRS was charging her interest. Who knows what for. Her accountant who she barely could afford had to undo the whole mess. I feel for you.
I wonder if there are any groups in the USA that donate sleeves and such. I think back east in one Province, there is a place that you can apply for a sleeve if you are financially insecure. This is run by a private organization not the good ole government that is no help to me. I live in BC and organization only covers their province not mine
Does anyone out there know if there is a group that helps people get garments free or low cost? Let GMAFoley know!
GMA. You can't rub your eyes with the plugs in or the plugs will fall out. I tried to be careful but allergies made me go into my eye to rub and I dislodged it. Don't touch those eyes no matter what once you have them plugged.
Take care. hugz4u
0 -
GMAFOLEY...Oh GMAFOLEY.. Are you there?... It's me your little sleeve fairy calllin you.....Google: crickett's answer to cancer.
This organization has partnered with lymphediva's and will donate sleeves to those in need. Yes you do have to fill out a form showing that you need help.
I just googled free lymphedema sleeves and got this site. It was from 2011 and I sure hope they are still doing this.
0 -
GMAFOLEY....It's the sleeve fairy again.
Google Marilyn westbrook garment fund. You have to be a NLN member which is 50 bucks, I think to use the garment service. But that doesn't make sense because if you need free garments, obviously you can't afford to join for 50 bucks. But maybe your therapist will be an affliate and can apply on your behalf. I didn't do the fine print reading as it is so late my head is now swimming and my eyes are shuting,
Oh the crickett site I gave you also provides wigs, mld therapy etc.
Please everyone if you can afford your sleeves without losing your house etc. then leave this to people like GMAfoley and others. (They screen people to see who needs it the most) One day we could be in there boat and need help. We will want that fund still available.
OK GMA let me know what you found out about it. I hope it isn't a balloon we are chasing and turns out to be something great.
Anyone else with ideas for those in need?
Sorry about so many posts but I have been posting and googling sites for you at the same time.
This is it. Good nite
and may your financial worries be lessened soon.0 -
GmaFoley, my stomach turned in knots reading your last post. Here I am complaining about my situation and you have all that hanging over your head. I'm really sorry you are hurting so badly financially, and I commend you for working two jobs. OMG! I can't handle the one job. You are an inspiration. I pray that you continue to have the strength you need to get through this. And if your tummy feels anything like mine (all tied in knots) I wish you peace.
0 -
I think there are more garment funds 'out there' than we realize. I found a number of resources a while back, doing an Internet search. What I compiled is here: https://docs.google.com/spreadsheet/ccc?key=0AtSa_oHjzz_8dE02eTZUV3Y3ZVVBR2JaRVJGT3BCNFE#gid=0
I did not take time to call or email all the resources I found, so I do not know if all of them are still valid, but it's a start if anyone is looking for help. It's organized by state/province and I did not find a resource in each state or province (sorry gmafoley...nothing in Oregon).
If anyone looks at the list and had additions/corrections, there's an email address in the garment-resource document where you can send me info for this little project.
I've posted this before, hoping that some of us might spend some time calling hospitals and LE clinics in our area to ask about garment financial help...if ALL of us made some calls, we might come up with a very useful resource list.
0 -
THANK YOU!!! - I was talking to my church too..we had a pre-vacation bible school carnival last night. The ladies said that they would help me get benevolence fund money to help pay for the sleeve... My DH doesn't want to "burden" the church with our problem because we have asked for help in the past and they came through for some very spendy supplies during radiation... so maybe he will think this would be a help.. I am one that doesn't want to go against his wishes..but this is important to my health right now... I am so torn.. Hubby is really having trouble with our financial situation, he has always been able to handle this but lately - I think the IRS Put him over the wall! We are still going to take that 1.5 hour trip to Eugene to go get my sport bra and maybe some sport compression tops with extra credit we have.
Thank you again and keep the suggestions and/or places coming... Maybe I need to go back east and live with someone for a while to use one of the other donation sites *wink* *wink*... Don't think DH or grandkids would like that idea...
0 -
gmafoley, try calling your local chapter of Susan G. Komen. Our chapter funds garments, screening, and treatment at an area hospital, and when I was poking around the Internet a while back to see what I might find, I saw all kinds of press releases announcing Komen grants for LE purposes. So I think if you google to find your local chapter, you'll get a phone number to call, and ask if they can tell you of any LE related funding in your area.
0 -
Ok - I kinda hurt this morning from having a compression clothes marathon yesterday..came home with 2 more sports bras - 3 semicompression shirts for bed so I don't have to wear the sports bra. REI had nothing compression that would work, I actually found the shirts in the aerobics wear in target
lots cheaper..Thoughts here ladies - what do you think?
To give me more compression, if i just wear one tee and a tank (both light compression wear) - I think that would work for bed time?? I guess tonight I will find out.
I am also altering my shelf bra tanks to work better - the shoulder straps are too long so I think I will try altering the shoulders and underarms to be a little tighter but not constricting.. any other Ideas - I can't seem to find anything that works at the moment?
Oh DH said we will just get my sleeve this week as I am seeing some issues in the elbow (old surgery site).. The fluid seems to pool there..when I'm not careful..
Hope you all have/had a great weekend..
Edit: My LE therapist had some family issues to take care of this week, so I won't see him until the week after.. Might need you for some advice this week... Pray I don't but I know you all are there for me - thanks again for all your input!
0 -
Bright Life Direct sells a sleeve called "Allegro." It's a nice, basic sleeve, similar texture to Juzo Dream sleeve (aka Juzo Soft); class 2 compression; three size options; beige. It costs $19.75 Version with attached gauntlet costs $27.00
Very nice customer service and return policy.
http://www.brightlifedirect.com/LYMPHEDEMA-PRODUCTS-Armsleeves/c133_134/index.html0
