Victoria - are you out of visits per your insurance, or did your therapist move? You should probably check in with your LE-T just for measuring and to see how things are going, she/he might want to change things a little. My LE has changed a lot since I was first diagnosed, and with each change the treatment changes some, lately my truncal is pretty much non-existant on the front because of increased scaring and adhesions (don't ask me why), so I'm supposed to be moving the lymph around toward my spine. And you're right, mine changes sometimes and I can't figure out why. Right now I'm pretty sure some of my hand swelling around the thumb has to do with the joint degeneration again (went though this last year and had to have a steroid injection) swelling went away, and my hand was normal for several months.
Can you get to another LEist or ???I am disappointed as I had an appt tomorrow and my LEist called and said she had a very bad cold , but gave me the option of coming anyhow. How thoughtful! With my lungs, I did not feel comfortable with that at all. To make matters worse ( for ME, not her :>) she is going on a vaca the following week, so I wont get in until the first week of FEB. Bummer. But, I am glad she called about the nasty cold. I dont live in a bubble , but if I can avoid that kind of close contact, I sure will.
It took me a while to find a good LEist and I had to go outside my INS to do so. I was guided and encourgaed by some of the ladies here. Any chance you can go elsewhere for a time?
Even though we usually have to travel further for health care, almost everyone is covered by our insurance around here - I guess that sometimes rural areas aren't all bad - those if you that live in some areas seem to have problems with insurance covering your medical stuff - that must be a real pain.
I only had a limited number of treatments ins would cover. I would have to go through the whole preauth thing again to start a new session, and they would not approve me unless the swelling was worse than when I left, which it is not.
So I could pay myself, but since I'm maintaining, I'm not sure it's worth it. I guess I need to give it time to see if the new routines will bring it down further. It's only been a couple of weeks for the dry brushing and the rebounding.
I had that issue with PT/OT also, I could only have 26 total treatments in a year, so had to really limit my visits and save them up - I will be on Medicare with a supplement starting in March, so trying to hold off until then before seeing LE-T again! At least she's a preferred provider
RE: Diva sleeves.
I just found out that lymphediva sleeves come in short as well as long! ( I Believe some were afraid to order becuz' they had short arms) Go to their page:
select a sleeve and drop down menu on sizing will show short or long.
Victoria - I think I'm doing a pretty good job managing my LE but, at the beginning, I had reservations about whether I was doing MLD correctly. Yes, I had a good LE-T that showed me MLD and gave me a chart, etc. But as the days passed I just wasn't sure I remembered everything correctly.
I went to this website (Rovig) and watched every online video about CDT and MLD, etc. It was very educational and gave me the confidence I needed to know I was doing MLD correctly and why I was doing it in the order the LE-T prescribed. Don't know if these videos will help you but it was my confirmation that I was on the right track.
I do MLD nightly, not wearing my sleeve during the cooler weather (always have it with me if needed), don't wear night garments, don't wear my sleeve/glove when working in the kitchen - I just pace myself with what I do. I may be taking some risk not protecting my hand in the kitchen but it's working for me. I am doing more things left-handed (I'm a righty) which causes more mess and spillage at times but it is what it is.
I wear OTC Juzo sleeves/gloves and they go in the washer and dryer. It's the summer heat/humidity that makes my LE unhappy but Little Martha (LE arm) sure is liking winter.
Purple, I emailed Josh last night and asked him to make a blurp somewhere on his site stating that their are short sizes. I have one of the short ones in the hospital sleeve. They come in large too!
I requested him to make Max size and many sizes such as Juzo does. I think that is why so many buy Juzo because there is such a range of size. Wouldn't it be great if Lymphedivas had such a size choice?
I also asked him what he is developing and I am hoping to hear from him and then will report back. I begged a tee over the cami as so many girls have the swell at the back of the pit.
Ohio, You can order a CD on selfcare from Northwest lymphedema center. I think it is 50 bucks,. I have it and it is the best so far that I have seen. JOVI works out of the same building and when I took the self care class there I saw the JOVI pattern making area. Was interesting. If anyone has the chance to take the all day class, go for it. It is in Seattle area and is by suggested donation of 100 dollars but if you can't afford then... whatever you can donate or free.
Purple - Yes I knew LympheDivas have short sizes. I just had trouble with the Short/Medium rolling on me and they don't make Short/Large. Eventually I will try the Regular/Large as I really would like to have at least one!
Hugz - Thanks for asking for max sizes. I think they are working on gloves. That would be awesome since their material is so soft.
Ohio - Thanks for the link! I'll check it out.
I'm originally from Ohio. )
Yay! We now have another source for Farrow Gloves!
I have been working with Debra, who is so nice and totally awesome for contacting Farrow and getting these wonderful gloves! They are offering the full range in all sizes!
Since the black Farrow is my favorite glove, I decided to order the copper and sand colors too. The longer fingers will be good on a day when my I feel puffy and don't want the tips to swell.
If you have not tried a Farrow glove, I highly recommend them, they are silky soft and I think the most comfortable!
I will ask Debra to post a size chart, as I wear a medium in most gloves, but a small in these.
Purple, I emailed Josh last night and asked him to make a blurp somewhere on his site stating that their are short sizes
Aaaah, great minds think alike!I emailed Josh this morning.
Check these out :http://www.alibaba.com/product-gs/728314794/100_cotton_UV_protection_arm_sleeves.html
I have to say, these look pretty cool but honestly, do you think they would protect from sunburn ? Comments ?
Some of the Coolibar products look and feel like 100% cotton, but they're advertised as being sunblock fabrics. So maybe! The ad you linked to does not suggest any special treatment, however. If you order that minimum quantity of 3,000 sets, let us know!
Here's a question for anyone using a jovipak or a tribute or something similar at night. Over on the NLN site, there's a forum called Inspire and at the moment there's a discussion of night garments. A therapist wrote in NLN's e-newsletter earlier this month that in her opinion, we should be wearing our 'night' garments (or bandages) up to 12 hours per day.
Besides the obvious problem of how to get anything done in my Tribute (like type...which is a big part of my job), I'm wondering what everyone does for clothing that's compatible with either these oven mitts on steroids, or a wrapped arm. Do you cut off one sleeve? At night I'm sleeping in a short-sleeved nightgown, which kinda makes me crazy because my shoulders and my unaffected arm are always too cold. But to wear the thing earlier at night or into the morning, what kind of get-up is compatible?
I am a pretty small person, but I wear a XXL hoodie over my wrapped arm. Got thru the toughest six weeks of winter that way last year. It's not as hard with the tribute. I can get some loose fitting pj's over that. But 12 hours a night? I don't think so.
I'm cutting off the sleeve of oversized garments. Thank goodness I'm in So CA and don't have to deal with much cold.
And coincidentally I have been wrapping earlier in the evening before bedtime, so I've been getting in more wrapped time.
Victoria - you are originally from Ohio and now live in So. California. I spent 20+ years in Orange County, CA. Moved back 'home' in 2001. The weather is more of a challenge with LE but I am a midwest gal at heart. Enjoy that So Cal weather. We had a wind chill of -11 today. Definitely midwest weather and I had to go out to the grocery store! Wore several layers of clothing and kept my LE arm warm and happy.
Interestingly, discovered my winter gloves all have elastic on the wrist that is not good for me . Guess I will be shopping for winter gloves that are warm and no elastic. Always something.
NEWSFLASH ON LYMPHEDIVASI asked Josh a bunch of questions, here are the answers:Gloves on the market in about 6 months, YEAH! way to go Josh!Also a palm pad for the glove and gauntlet. I have to check my email, I think he said that is for sureCan't quite do max sizes yet, (it has to do with inventory at this stage of the game)He is going to update the web page so the pictures rotate with info that there is indeed short length sizes. ( yeah, now if I could just get that max, life would be grand.)AND THE BEST FOR LAST AND HE NEEDS OUR INPUT FOR DESIGN. Josh does check the threads for input.DO WE WANT A CAMI OR A TEE? SPEAK UP! THIS IS ABOUT YOUR COMFORT HERE!MY input is that a lot of girls swell at the back of the pit so I vote a tee that doesn't have cap sleeves to creep up and leave nasty swell lines at the back of my pit. Max size please also with a variety of sizing. V neck but not deep. My cleavage is not to be seen!Round of chocolate for Josh!
Hugz, thanks for the update!
To Josh I would say--T, please! There are quite a few camis out there, but T shirts that cover every inch of the torso are mighty hard to come by. Hugz likes V necks, but I would LOVE to see a scoop neck, and whichever way you go on that, take care that the back of the neckline isn't so high (hug the top of the neck) that it cannot be hidden under a variety of clothing. I don't want to have to wear a crew neck shirt or sweater just so I can hide the high neckline of the compression T. We've chatted about compression T shirts in other threads, and perhaps you've seen those discussions, but my memory is that there's a lot of interest in keeping logos to the inside of the garment, so we can wear it as a layer of 'normal' clothing, not necessarily as active wear; as Hugz says, keep the sleeve long enough that it does not cut into the axilla; and indeed, would you consider making both long- and short-sleeve versions?
This is very, very hopeful news. Thank you, Josh and your family and colleagues at Lymphedivas!
Definitely a tee. There are already camis out there (see WearEase, Sassybax, etc.)--there are no tees.
I also vote for a T-shirt over a sleeveless cami.
Josh, if you are reading this, the design of the Memoi short sleeve shaping cami would be a terrific starting point:
It's been the best thing I've found so far: low cut, good compression, doesn't completely flatten the breasts.
One problem is that the seams where the sleeves join the body are pretty thick. Even when I wear it inside out, it can sometimes be a problem.
Aside the time it takes to shower, I wear compression round the clock. (I even wear a glove during MLD, only taking it off when I get to the hand.)
I find that it is hard to keep my hand LE under control unless wear my tribute (with hand wrapped in 3 rolls of gauze) at least 12 hours a day. When I sleep, I wear a compression athletic shirt and then a long sleeved shirt with stretchy arms over it. I arrange my day so that I do hand-intensive things when not wearing the Tribute. Sometimes this means that I wear the Tribute to work (e.g., when I know I will be in meetings where I don't need to write things down). I wear vests, ponchos and loose sleeved sweaters.
If I really need to be able to use my hand and haven't hit the 12 hour mark, sometimes I take the tribute off, but keep my hand wrapped in gauze. Not perfect, but the gauze keeps my fingers under control better than even my best fitting glove.
Thanks, hugz (and Josh!!)OK, you said : "keep the sleeve long enough that it does not cut into the axilla; and indeed, would you consider making both long- and short-sleeve versions?"How does this work ladies?I hate to appear to be ignorant , but what about our ' regular' compression sleeves ?
But of course I'll be ordering the 3000 minimum...sleeve covers all around !
Night garment dressing: I bought an inexpensive hoodie from Wal-Mart and cut off one sleeve.
Josh @LympheDivas: Solid PURPLE armsleeves Please!!!
Very excited about the gloves! Yay! PS: I need Max sleeves too.
Ohio4me: I escaped the frozen tundra called Ohio when I was 18. I am a mid-west girl at heart too, and I do miss the fall, I get homesick sometimes. But I'm so blessed to be here in sunny southern CA. I think it was about 78 yesterday when i went walking, it was really hot in the sun. <sorry>
Tee shirt with long sleeves would be awesome, and if I can get them in pretty colors I don't care if they can be totally hidden by clothing. I don't have a problem with the Sheldon Cooper look.
Purple, the idea for having a long-sleeve version is for those with truncal LE only, as well as for those of us who do not always need to wear a medical compression sleeve all day, every day.
Aaaah, I see carol. gotcha!
More sleeve covers...