GRRRRRRRRR I HATE LE..........
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When I went to PT in April it was for cording. At that time the PT measured both arms, popped most of the cords and set me up for 6 weeks of PT. LE was NEVER mentioned. I assumed I was just a victim of AWS. Then I got a phone call from the orthopedic supply company to come get fitted for sleeve! The first PT was certified in LE but she sure was not informative! I ended up switching to the cancer center to an awesome PT and PTA. The first few weeks I would say my PT was not the best care. When I switched there was a lack of communication (sa me providing company different location. This motel 6 verses Crown Plaza lol) so I missed alot of the self care information that I should have received. When I was there this passed Thursday the PT asked about a handout that I should have gotten when this first started.....nope I was given nothing! I'm so glad I spoke up and got the PT services that I feel better about.
Paulette- tell them what you need. I have a hard time speaking up and the BC has made me a little demanding with my care.
Hugz - I don't want to talk about my LE in public either. I chose to keep my cancer from my parents, my employer and basically everyone with the exception of a few close friends. Now with the compression sleeve I feel like I'm a walking billboard for BC. I wear long sleeves some of the time now to hide it even with it 80 degrees outside.
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Vargadoll- I am going to speed up and tell them what I wanted especially I don't even know I have Le. I suggested to my MO because I wanted to learn to prevent Le. I still have post surgery swelling after 3.5 months surgery. Also I can feel every time I have chemo my incisions got more fluid there. Maybe I should an OT not PT. I will try to fit in a compression sleeve so I can use. I'm doing the breathing and stretch exercise.
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I finally bit the bullet. I was diagnosed with truncal LE more than a year ago and went to an LE therapist last fall. All the gains I made were derailed by my latest surgery in March for CC and other issues. So I went back to the LE therpaist and this past friday I was fitted for my first set of sleeves and gauntlets - $250 out of pocket. Went back to work and someone already asked what happened to my hands. I work on a computer all the time, including my own stuff at night and on weekends and the gauntlets made it difficult to type. Most of the week I probably will only wear the sleeves.
I will have to wear both when photographing events and working out at the gym. I also want to get a second pair in black (instead of the awful beige) so more money out of pocket.
One thing I can say after three days is that the sleeves make a big difference in my nerve pain. I knew that the nerve pain was associated with swelling but I thought that was only in my truncal area. That alone will keep me wearing them at least until it gets beastly hot again. GRRRR I hate LE!
Scottie
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Hi all - this is long lost Gma - I have kinda given up on the sleeves unless I'm traveling or exercise. My swell has been gone except for my non-LE upper arm that no one seems to know why it is 2 inches bigger than my dominant arm. They just tell me treat it as if it is LE.
Anyway I have a question. I am going on a missions trip to Rwanda next August and have to have all these vaccinations. The pharmacies around here are open areas - don't figure they can give them in my butt. You think they could use my leg instead? Otherwise it would be my non-LE arm.
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Gma - I have had the same issue with flu shots every year, and shingles & pneumonia & tetanus. Since i had a BMX with SNB, and later ALND on the right, I refuse to have shots even in the left arm. That means trying to convince my PCP to do my hip or butt - but they don't usually carry the vaccine & refer to the pharmacies. When I was an active patient, I could usually get them at the infusion center. I lucked out this year with a grocery store pharmacist who was willing to give me the flu vaccine in his 'consult' cubicle (3 sides closed if he pulled a pocket door) as long a female clerk observed & I just shifted my pants down just a little w/o removing. Otherwise I've had to pay ridiculous prices at a private compounding pharmacy/infusion center, or at one of those 'doc in the box' places.
I'll be interested in what more knowledgeable people say about the possibility of shots in the thigh. Surely if wouldn't offend anyone if we wear shorts to a drug store. Although I expect many pharmacists would say they aren't trained to give shots in the thigh. Sigh.
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GMA and MinusTwo, I'm with you in struggling to find someone who will do flu and pneumonia shots in hip or thigh. Used to be grocery stores had tables with nurses who gave them--in arms. The younger ones wouldn't budge on this, but the older ones were savvy enough to know it was fine to do it elsewhere, so I'd find me an older nurse and she'd happily do my thigh. Now though, in my area at least, it's only the pharmacies that do shots, and they all have policies from their corporate offices. that don't allow them to do anything but the upper arm.
Used to get them in the rump from my oncologist's office, but he retired. His replacement doesn't know diddly about LE and insists I can use my arm, so won't okay the shot for me.
So my next strategy, which worked for a couple of years, was to go to a Mormon missionary inoculation center (I live near a very Mormon suburb), where the nurse was wonderfully aware of LE cautions (amazing!), and they charged me (a non-Mormon) a very reasonable fee. But they closed down last year.
Last month I got a nasty scratch from a nail on a dirty garden trellis and ended up having to get a shot (in thigh) at a critical care facility, but that was a $25 fee, so I'd rather not do that for the flu shot.
I'm now doing MinitClinic at a CVS pharmacy, but In order not to be charged I have to bring along a prescription for the shots I need from my PCP. Didn't know about the prescription last year and ended up getting a $69 bill from them a few months later--made me mad!
Seems like it's a yearly battle just to get a flu shot. I wonder what we could do to make this less of a struggle. Any thoughts?
Grrrrr!
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I haven't had a flu shot in years. When I worked for the school system it was almost mandatory for staff to get them. I worked at two different schools and managed to dodge getting one. I see my PC in 2 weeks and I will see what she says about my having one this year. I'm not the same so I can assume my immune system isn't either.
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Unfortunately it's not the flu shot i'm concerned with: Hepatitis A; Tetanus; Typhoid. Other vaccines to consider: Cholera; Diphtheria; Hepatitis B; Meningococcal Meningitis; Yellow Fever.
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Gma - As Binney said, the doc in the box will usually do it, but it's expensive. I called first to make sure there wouldn't be any "emergency room" charges (since some of them function as emergency rooms). I had stepped on a rusty piece of metal so needed a tetanus shot, which would have been covered under Medicare. I talked to their nurse & we agreed I probably didn't need to see their doc since I'd already talked to the free "nurse line" associated with my insurance. I just needed a nurse to give the shot. However to get it covered, I had to pay for a visit to their doctor, which I didn't know in advance. Ended up I paid $80.00 for a durn tetanus shot. Never the less, I expect you can negotiate with some of them & they will do shots in the hip or thigh. Or maybe if you have copies of prescriptions from your PCP it would be easier to negotiate. Please so keep posting about what you find out.
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try an allergy doctor who has a “shots” clinic. That is where I have had my flu shot done past 2 years and they have done it in my butt. I explained why and the young lady had no problem.
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Nope, Balthus, in our town it is Pharmacy only for travel vaccinations and only one of those pharmacies do yellow fever cards. I did have a nice chat at the pcp's office with there vaccination head. She said our Fred Meyer Pharmacy took over for the only vaccination clinic in town. Being I have the issue of LE bilateral, they could probably fudge and do something for me. I am waiting for our first meeting at church to discuss it with the Missions crew. Doc did order the yellow fever vaccine because the pharmacy said it was backordered until March. We will see and will let you all know when I find out what to do.
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This is my answer to Gentianviolet. - I have had lymphedema since 2004. In 2014 I had cellulitis. I have not had it since. I don't know why I got it originally but I think it was a hang nail where dirt may have gotten in. Since 2014 I have had scratches and cuts on my arm but no cellulitis.
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GMA. Hey I missed you. Often thought what your up to. Glad you stopped in!
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bum
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Hey, Gma!! Good to see you.
Last time I went overseas and needed massive vaccinations like that, I went to the county health department. Is that a possibility where you live? I'm talking back in the 90's,, so I may be WAY out of touch on these things.
If the pharmacy is the only way to go, bring a letter from your doctor stating you need the shot in your thigh and wear shorts???
And wow,, Rwanda!! What will you do there?
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Gma, welcome back. Good to see you, glad you're doing well. For typhoid, check if you can get the oral vaccine. My travel Dr says it's better, because it gets the immunity down inside your gut, which is where the typhoid bugs come in. One less LE worry. Safe travels.
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Glennie: Our group from church is going to do a Vacation bible school for the week we are there - for the school they have in Rwanda.
Amy - yes typhoid will be given close to when I leave and can do oral vaccine.
Our County vaccination place was closed last year and Fred Meyer Pharmacies took it over. I am waiting for our first group meeting next week, then will be going down to get the Hep A & B because I need the booster (in 6 months) before I go. The yellow fever vaccine is backordered until March. The Pharmacy has a planning for trip vaccinations but it costs $50 for the consult - Not sure it is worth it. I will get more information at the meeting, I hope.
Other than that - I'm doing good - LE hasn't flared at all since my reconstruction/reduction surgery 2 years ago. I did find out after having a bad case of tendonitis in the hand, that I have arthritis in my wrists. So most of my flare is actually that rather than LE. I get on a exercise jogger (rebounder) once a day. Feet never come off the mat. It seems to help with the lymph flow. I wear my sleeve during that and any exercise, or travel.
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gma. Glad to hear your forging in new directions. I love it when you pop in for a hello!
For parasites: When my kid is on her way back from a missionary tour she gets the parasite meds from that country to bring home and start because that particular country she's in is familiar with the exact type of parasites that reside in their country so they have the right meds.
I also bought her a pop up bug tent that is completely enclosed and you set it on your bed. NO bugs can enter, even noseeums. Military and tourists use them in bug lands.
See the tai chi easy breather exercises I posted. So easy and effective. Will make a good replacement as you can't bring your rebounder. Takes maybe two minutes to do. Most important morn and bedtime to remove fluid if you have sluggish le system.
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hugz - question, can we do this exercise? I don’t think we can with Le. Exercise 1 .
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I would not recommend that one unless you are already doing it with no le problem arisen and are in fine shape
The trouble planks for us le'rs is that your putting a lot of weight on your arm that may not be use to it And it could cause a flare up.
I won't do push ups type exercise either or downward dog pose types.
And resistance bands for arms are hard to gauge what resistance your pulling on your arms from day to day. Some days you can really pull and resist workout other days you can pull lazily making it inconsistent. But if you flare your le up then you won't know exactly how much resistance set it off making it hard to judge for next workout.
Simple old fashioned weights are safe and precise measurements and we know how much we are putting into the lift. I started with one pounds two years ago for triceps and am finally up 8.5. They don't have 8.5 lbs at my gym so I hold a 7.5 and a one pounder together to make8.5lbs
When I need to move up another pound I'll hold a 7.5 with a two pounder in one hand to make 9.5 and then finally I just use a ten for the triceps. Slow and steady wins the race.
This type of weight lifting was studied at a universityand found to work safely for le.
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Thank you hugz, I knew we can’t do that!
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I agree - extra weight on the arms is not a good thing.
Update on vaccinations - Still trying to find someone in town that does injections in the hip - the pharmacy is only qualified to do it in the arm... no exceptions. If I haven't had any LE in the arm for over 2 years, how risky is it for one Yellow Fever vaccination? That is the only one the doc office won't do.
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I FINALLY FOUND RELIEF!!!
If you struggle with throbbing, dull aching, constant pain radiating down your affected arm ( LE) and are contemplating medication... I The you to try A.R.T.... I was skeptical but am now finally almost pain free! The scar tissue & adhesions that affect your nerves in your armpit and travel down your arm... can become unbearable. I still wear my sleeve for mild LE...but I no longer am considering medication.
Daily cardio and strength training make a huge difference in “ flow “.... I make a point of doing 3 mi every day which helps my LE.
I truly believe every woman who has had BC and a SNB should have A.R.T done! It is so helpful!! A.R.T has changed my quality of life. A.R.T has a website where you can find a licensed provider. Make sure they are upper extremity certified. My therapist works primarily in the subscapularis region and armpit.
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GMA. From what I remember you had a lot of trouble with swelling two years ago. That would put you at past stage 0 which means you still have le but it's laying low right now and so needles would be not goo. Unless you were wrongly diagnosed and didn't have le. Ugh the pits ain't it!
Jackie. Yes ART is good but peopleneed someone well trained. Good to know that we should look into one that specializes in upper body. Thx
Good on walking miles a day! Yeah
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Jackie - can you explain what is ART? I am very lucky to find a good PT, both of them have been working in that field over ten years.
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Paulette...
ART is specialized therapy. The therapist must be certified in it. It is expensive too... so not many practitioners out there. It truly is life changing. Here is the website to read up on what it is... and then there is a database of providers according to state, country, etc
For me, he broke up adhesions that we’re sticking on the nerve .... pain 0f 7 went to pain of 2.
I used ART for running injuries... I didn’t think it would help my LE arm. I am hopeful it will make a difference In flow and lessen the back up. I just wanted to share so others can give it a try
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one more thing... some ppl say they do ART... make sure they are certified. Like I said, it is a costly licensure, and it requires specialized training.
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thanks Jackie, I was looking it up and I found few providers in my area. Don’t think I need it now, I will keep that in mind.
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Update - looks like I can get most of the shots in the hip through the clinic I am a part of - only one so far that needs to be in the arm is Yellow fever because they don't do live virus vaccines at the clinic.
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Hi all just thought i would jump on this thread to as some of my fellow BC warriors their opinion. Im still going through my treatment & went to the hospital today to be marked for radiation. I have 21 sessions in all. As i had 14 lymph nodes removed & am high risk i requested to be seen by a nurse in the LE department. As she took the measurements today on my right arm (im right handed) all measurements were lower than my left arm except for the bicep. The nurse looked at me & said we need to monitor this as im not sure if its LE or not as you have no swelling, no pain etc etc however your measurement in your bicep is slightly higher than your left arm ( less than a cm). She said she did not know if it was due to my right arm being dominant or not. She said that she would write me a prescription for a mild sleeve i believe she said 15 - 20 comp. I knew i would need a sleeve regardless to exercise & for traveling but she said you do not need a glove or gauntlet as you have no swelling in your hand (or anywhere else for that matter). I am not an expert in LE as im not sure if it is LE or not but wanted to ask don't i need a glove or gauntlet for traveling and for exercising? I don't want to cause myself any damage or even risk getting LE if i don't have it by not wearing either of those with my sleeve.
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