Sunday, June 18, 2017

More Lymphedema Information And Progress Report

The Lymphatic System:  sewer of the body.  Next topic.

That's what my Lymphedema therapist told me her doctor said he was taught in medical school about the Lymphatic System.  Isn't that just about the saddest thing you ever heard, especially since there are actually so many people who suffer with Lymphedema, most of whom don't even get properly diagnosed and therefore don't even know WHAT THEY HAVE???? 

My first treatment with Kay was on Wednesday.  Kay told me beforehand to wear shorts because she was going above the knee, so I dug around and found some, which was a pure-dee miracle because I haven't worn shorts in over 20 years, and I did a big clean-out of my closets and donated a bunch of stuff a couple of years ago, having given up hope, then, of ever being able to wear those smaller sizes.  Now I kind of regret that I let my hot-pink size 12 jeans with the pink polka-dot ruffled top go.  Oh, I suppose I'm too old to wear something like that now.

As she busied herself with smearing her hands with lotion and massaging it into my legs in an upwards direction, stopping periodically to lightly massage a lump, she answered my questions and corrected any mis-information I had collected up to then, from various sources.  She told me how Lymphedema became one of the conditions that she was educated to treat, kind of an accidental development, it seemed.  But I find there are never any accidental developments.  Oh, yeah, we might make choices that don't turn out well.  That's us and our dang Free Will, which is mostly a curse as far as I can see, because we don't generally make the RIGHT choice.  But when doors open right when you're standing in front of them, that's God trying to tell you to step across the threshold.  Kay was wise enough to do that.  And now that Lymphedema is becoming better known for what it is, she's being kept pretty darn busy doing what she has been trained to do.  If that ain't Job Security, I don't know what is. 

I realize I may have ranted at some point about how the food and drug industry doesn't care if their products make us sick, since we are heavily marketed to and we drag that stuff into our homes, like rats do with rat poison, and pass the buying habits to the next generation, therefore their profits are not diminished when we sicken and die.  And I may have said that the medical industry and the fitness industry lives off us when we are sick.  But this does not mean I'm not glad they are there for us.  I am especially impressed with BPR because they try very hard to help us get stronger and thus be able to escape having to have surgery.  Surgery often doesn't have to be the answer and I really wish I'd tried going to BPR when I first tore the meniscus in my knee.  I might've been able to avoid the surgery I had for the repair, and then the total knee replacement that followed.  And my quality of life would be better today, for sure.

I told Kay that my shoulder guy's PA had told me that they just don't know of any physical therapists who treat Lymphedema in NorthEastern Oklahoma OTHER than at BPR (Bartlesville Physical Rehab), and that if they have patients who don't want to go to Bartlesville for therapy, the best they can do for them is to send them to a massage therapist.  I wonder if Medicare pays for that, as it seems like someone told me once about how they'd love to have massage for their back problems, but that Medicare doesn't pay for it.  And, yikes, massage costs about a dollar a minute.  It's probably higher than that in some places.  But anyway. 

Kay told me that there is a group of doctors in Oklahoma City who are doing a lot of work in Lymphedema treatment.  I did a search on the Internet and what popped up was Oklahoma Vein and Lymphatic Specialists, at two different addresses.  There is also a physical therapist named Don Landis who had a private practice in Edmond up to Febuary of 2017, at which time he suspended his work due to health reasons.  According to the web page I was on, he still does seminars for those wanting to become certified in this field.  The Lymphology Association of North America (LANA) has a website where you can search for a certified Lymphedema physical therapist in your area. 

All this makes me feel very hopeful, and yes, grateful.

I asked Kay if the cellulite, or "cottage cheese", that so many women complain about in their thighs and buttocks is due to Lymphedema, and she said no, that those are fat deposits.  She said if cellulite becomes inflamed, that's known as Cellulitis, and there is treatment for that condition, as well.

I asked her if Lymphedema has any connection to Elephantitis and she said yes, because it is a possible complication of having a long history of untreated Lymphedema.  The skin loses its elasticity, stretches out, and then folds.  It starts taking on a gray-ish cast as bacteria begins to grow in the folds.  She said now and then she sees someone whose skin is beginning to show signs of developing these problems, and that she has them use a wipe that contains bleach to kill the bacteria. 

I'm telling you, this bacteria stuff is going to kill us all someday.  Our neighbor is finally up and about after having contracted flesh-eating bacteria in the hospital.  It was a scarey story that he told, about how he couldn't even get anyone to take his problem seriously until he needed emergency surgery to remove the dead flesh, and it was a long healing process during which he lost a serious amount of weight and looked very ill. 

All THIS makes me feel scared, and yes, motivated to do everything I can so that won't happen to me.  I'm not in panic mode, because I believe them when they say I'm not as advanced as some cases they have seen, and that we have caught it before my skin has been damaged.  Grandma and Aunt Viv never had it that bad.  But it is more important than ever that I get these next thirty-five pounds off.  What I have already lost has taken me from a seam-stressed size 20 to a loose size 16.  I don't think I have ever, even when I was a girl, worn anything that was lower than a size 10 or 12, except for maybe a few expensive clothes that were marked as an outrageously small size, yet fit about the same as my size 12's.  Oh, these marketing people.  They know how women love to brag that they wear a "size 2".  So they mark their clothing line accordingly and it flies right off the shelves.  OMG, we are SUCH a bunch of gullible little lambs.

But anyway.

I am having trouble wrapping my brain around exactly how it is that the Lymphatic system can get the water and all those impurities out of the bloodstream and how all that works.  Apparently I have misunderstood about it being a spongy material as it is not, it is a set of veins, separate from the blood veins yet able to pull fluids from the tissues.  There are lymph nodes in most of the places where people sweat and when you receive massage for movement of lymph fluids, the direction of the massage is toward these sites.  On Pinterest, I found an image of the same chart that Kay showed me.  Maybe some of you will find it helpful:
https://www.pinterest.com/pin/555350197774273867/
I am painfully aware of the lymph nodes behind my knees.  I often have swelling and pain there, and have had since before I was 40.  When I look at that chart, I can see that there are three veins that form a junction behind the knee, and of course they all come from below.  So I, indeed, probably did cut off the circulation in the back of my thighs and knees sitting on all those horrible ill-fitting chairs my employers provided me over the years.  Sit on your butt, not on the backs of your legs, my darlings, that's why it has all that "padding".  If you scroll down on this page there are lots of things to look at on the subject. 

Lately I've been looking at information on "dry brushing", I've watched several YouTubes on the subject, here is one:
https://www.youtube.com/watch?v=YZ7dm_wNdcw
I had a brush that was a wooden back brush and it had natural bristles, it would've been perfect, but I can't find the darn thing.  But as I watched the demonstration, I couldn't help wondering why the same things couldn't be done with a dry, rough-surfaced washcloth, or one of those big Luffa sponges? 

Of course those of you who know me, know that I just loooooooove Pinterest.  I could easily spend all day, going from one thing to another, guided by Pinterest.  I click on the picture, the picture enlarges in a new tab, then I can press the "read it" button or I can scroll down and see what's on the list of "More Like This", and that invariably has me opening so many new tabs that I have to go back and close some.  Whenever I am on Pinterest, I have a word-processing document open where I can copy and paste URL's to sites I want to return to at some point.  Sometimes, just copying the picture and pasting it in my pictures file is enough, if I don't need the whole article about it.  I do that when searching for decorating ideas, or crafts, or quilt blocks, that sort of thing. 

There is a lot of wrong information on the Internet, so we do have to be careful.  And Kay confirmed that there certainly IS a lot of wrong information out there about the lymph system, because we, meaning our nation's doctors, have not studied it in depth for very long and there's a lot they, and therefore WE, still don't know about it. 

I just hate that Grandma and Aunt Viv had to struggle with it without the help and/or understanding of anyone who treated them.  They took all kinds of diuretics, became less active when they couldn't put on their shoes, and, in short, did all the wrong things.

But on the other hand, I'm so grateful to the BPR therapists and their support staff who cared enough to introduce me to the subject, you can't dispatch the enemy if you don't know what or who it is, and for actually having people trained to treat it, seeing as how Bartlesville so often seems to me to be this little closed-off community where if you want or need anything out of the ordinary, everybody you talk to just gives you this befuddled look and you just get dismissed because they don't have any idea what you're talking about.  I'm grateful to my shoulder guy in Tulsa who likes and trusts BPR, and who was willing to order the treatment when my family doctor went off on vacation right in the middle of the process and left me holdin' the ball.

And so I continue to learn about the condition, as much as I can absorb.  Since my last post, I've swapped out my desk chair for one of those big exercise balls, and I bounce on it some of the time.  I've read where the bouncing movement helps the lymphatic system keep moving.  I've also read that those mini-trampolines (rebounders) are wonderful for this.  Here is a YouTube about that, there are tons of videos about rebounding for lymph drainage on YouTube:

https://www.youtube.com/watch?v=sdx6DxUklls

OMG, looks like I might have to ease into that, and yikes, would falling be a risk?  I looked for one while we were garaging, and I did see one, but I want the one with springs that hold the tarp.  The one we saw just had straps made of webbing.  So I didn't buy it.  I think I'll just gently hop, when and if I find one.  Last time I was on a REAL trampoline, it made me have to pee.  So not sure I'd want an audience, if you know what I mean.  Bouncing on the exercise ball doesn't bother me, though.  One of the girls at the workout center has an exercise ball chair.  Seriously!  Just do a search on "exercise ball chair", you'll see I'm not making this up.  Boy, wish I had had one of those 30 years ago.....

Kay wishes I had compression stockings, but those will need to be made to my measurements, as I've never been able to find any over-the-counter that fit, and they don't want to order the made-to-measurements pair until I can be gotten down to what is normal size for me.  Medicare will not pay for them and so I will have to, and they are kind of expensive.  Until that point, I'm wearing stretchy yoga pants and I am too fat to wear them and look ok, so I wear a big T-shirt that covers up my big rear-end.  I bought some of those "Jeggings", but they are less stretchy and they make my "bionic knee" hurt.  I had to wash them because the tag said they'd bleed for awhile and I didn't want that on my skin.  So I guess I can't return them now.  I guess I'll just wait till I lose a few more pounds and maybe then they'll be comfortable for my knee. 

Hubs and I hit the garage sales on Saturday and I found six pair of yoga pants in the right size and in good condition, some for only a quarter, others for twice that.  I was looking for bicycle pants, as I could wear them when my legs are bandaged, but the yoga pants are comfortable, they are smooth enough that, in the evening after my shower I can prop my legs up and do self-massage through the fabric without having to smear on any lotion.  Maybe God will bless me with bicycle pants the next time.

This weekend I bought a gravity table, made by IRONMAN.  Maximum weight tolerance, 270 pounds.  You hook your feet into it and then turn yourself so you hang like a bat.  Back when I was having so much trouble with back spasms, one of my co-workers told me he uses one for his back, and that it really helps.  I thought it would be nice to have if I tie the tether tighter so it'll only let me go to about the 4 or 5:00 position.  I have read on the Internet that you don't want to use these if you have high blood pressure or glaucoma, which is an eye condition that slowly takes your vision away, because of too much pressure in the eye.  My eye pressures are checked regularly and they have always been good.  And my blood pressure is good, too.  So those are not issues for me.  Still, if God intended for us to hang upside down he'd have put special stuff on our feet, and though I sometimes hung off the Jungle Gym from my knees when I was a kid, and my kids used to hang off their swings when THEY were kids, I just don't think it's good to push the envelope when you're not young anymore. 


I am trying to be more active, I'm better at going with Hubs to the workout center, where I use the recumbent bike for 20 minutes and then I walk around the padded track till I have done a mile.  Hubs and I went to a couple of free tai chi lessons at a local church, but some of the arm movements are big and swooping, and I hurt my shoulder.  I talked to my shoulder therapist, Kim, about it at my last shoulder appointment and she measured my range and asked a few questions and then said she didn't think I'd torn anything, but that I might want to self-modify some of those tai chi movements.  I'm not really happy with that tai chi class, anyway.  The warm-up is so long that it just wears us out before we even get to the actual tai chi movements (they call them "forms").  I don't know about Hubs, but by then my brain is tired, too, and it seems like it's harder to follow along and do the forms than it was when I tried to learn by following along with a YouTube presentation, which is, if I haven't shared it with you on the last post, here:
https://www.youtube.com/watch?v=KjYhoAuGqUU
Or here:

At least I could stop and back up the YouTube and watch something over again if I needed to. 

Another problem is that the local lessons are using different forms than any I can find on YouTube or anywhere else online, for that matter, so I can't practice at home.  They call it "8-Form Yang-Style Tai Chi", and they sent me a list of the names of the movements.  They are:  (1) Sunrise/Sunset; (2) Windsong; (3) Hold Ball/ Block and Push; (4) Rainbow / Read Book; (5) Read Book / Pull Through / Push Back; (6) Wind Song / Hold The Mouse / Pet The Mouse; (7) Wind Song / Cross Hands; (8) Pick Up Tigers.  After two lessons, reading the list, I can't envision the movements for most of these and wouldn't be able to do them without following along with someone else.

I was already eating right, so I'm continuing with that.  I have kale in the garden so I've been experimenting with ways to make myself like it.  There is a method of pouring on a little olive oil and some vinegar and then "massaging" it into the kale, it helps break it down so it's easier to digest.  From there you can add things.  I've decided I like it this way and I have a big bowl of it with a couple of hard-boiled eggs and maybe some other things like tomatoes, onions, shredded carrot, whatever.  As long as it doesn't add too many calories.  That's been my breakfast.  For lunch I've been having a little piece of lean meat and maybe some salad or some kind of veggie.  By suppertime I'm not even very hungry, so I have my cantaloupe and banana and maybe an apple.  I haven't had any bread so I'll toast half a bun and butter it, and finish off with that.  My weight is yo-yo-ing right now, at BPR they think it might have something to do with the water weight I'm carrying.  I'm drinking more water and a lot less coffee.  I've seen some people recommend not consuming dairy, as it makes mucus in the body.  I've heard that before from people who say to stop dairy when having sinus problems.  But I don't know if that's true and I haven't asked Kay.  These same people recommend macrobiotics, including yogurt, and that's dairy, so I'm not sure what that's about.  I do enjoy my cottage cheese, and if I'm not fighting a plateau, I might have a medium baked potato with cold cottage cheese on it.  I'm at the point where that just tastes DEE-lishious.  And when I have my bread and real butter, it tastes better than cake ever did.

One of the things they talked about in tai chi class was about breathing right, and I've seen some people talking about how proper breathing helps the lymphatic system work better.  I was a chubby ten- or twelve-year old, and I remember about then my mom bought me a dress that was turquoise, made of polished cotton, which I thought was actually satin at the time, and was "long torso", with rhinestones in the band that joined the bodice to the skirt.  Oh, I felt beautiful in that dress!  Well, my belly stuck out and one day my mom said to me,  "You know, you can weigh more than you should and still look nice if you carry yourself well."  And that's when she taught me to suck in my belly and breathe shallowly.  She did not do me any favors teaching me that.  I have gotten in the habit of it so much that it has become a way of life.  The few times that I have had to go to the Emergency Room, the first thing they do is put oxygen on me because they say my breathing is shallow.  So I have been taking in less oxygen than I should for a lifetime.  It's just a miracle I'm not dead by now.  Here is a WebMD article about deep breathing exercises.  Apparently it can be "overdone", just so ya know...
http://www.webmd.com/balance/stress-management/stress-management-breathing-exercises-for-relaxation

Who remembers Jack LaLanne and his exercise show in the early 1960's and all those deep breaths he used to take?  Seems to me, if I just breathe so that my belly (below the waistline) goes in and out, every time I notice it's not, eventually maybe I could train my body to breathe right without my  having to be conscious of it.  I suspect that one of the reasons interval training is so good for us is because it makes us gasp for breath, and we take in more oxygen as a result.

Here is a YouTube explaining all that:
https://www.youtube.com/watch?v=Jd78W66mA2U

Let's see.....  have I covered everything? 

Antiperspirants.  We don't want to be applying those chemicals to our armpits.  Some major lymphatic tissue is there.  WalMart carries almost no deodorant that is not also an antiperspirant.  I finally found one made by Arm and Hammer, called Essentials Natural.  So far it seems to be working well enough for me.  Yes, I do stink a little at the end of the day.  But if I was going to be among people who would be offended by odors, I could probably clean up and reapply in the middle of the day, or after coming in out of the garden, and be ok.  I don't even wear make-up very often anymore.  I don't like putting that stuff on my skin or letting it migrate into my eyes.

Sweating is good.  Yuk.  I don't like to.  Some people say, "try a sauna".  Hell, this is Oklahoma.  Just go outside.

Don't stress.  Yeah, right.  I don't know anyone that has family that doesn't stress.  There was a time when I couldn't eliminate stress because of my family any other way than if I just got in my car, drove until I ran out of gas, and then took a waitress job in the nearest small town, under an assumed name.  And don't think I didn't think about it.  Often. 

Alternate hot and cold water in the shower.  Yikes, I don't know if I could do this without shrieking, scaring Hubs half to death and making all the dogs in the neighborhood bark.

Don't wear a tight or underwire bra.  The lymphatic system is quite concentrated in that area, both back and front. 

That's about all I can think of.  Monday is the first of my "three times a week" treatments.  Looking forward to it.  For now, I need to get up and get moving.  It's going to be a good day today.  We had rain.  Hugs to all....  xoxoxoxo

Tuesday, June 13, 2017

Well, Don't That Beat All....

I have had my last therapy sessions for my shoulder.  I have full range of motion and pain only now and then.  I'm sleeping a lot better.  I feel blessed to have gone to Bartlesville Physical Rehab for that reason and more.  One of the reasons is that their people are so kind and caring.  Oh, yeah, they laugh and say they just love making people feel pain but I found them to be as gentle as is possible, considering that pain is often necessary to open new areas to healing.  And you know, I think that's true of any pain, whether it's orthopedic, emotional, or whatever.  But I won't expand on that as I don't want to get off topic here. 

About midway in my therapy I mentioned to one of their non-therapist employees that I was trying to lose weight and one of the reasons (but not the only) was that I had gotten so fat in my shin area, just under my knees, and it's ugly as hell.  I mean, I just feel like I'm carrying a ham strapped onto each knee.  Let me state here that I am sturdily built; meant to be strong peasant stock, that's where I get my body type from.  So, even as a girl, I did not have delicate ankles.  The camera flash is kind of in the way here, but you get the idea.

Maybe these two will show better.....


DANG!!  Another camera flash in the wrong place. 

I'm a little older and heavier here, obviously it wasn't uncomfortable for me, then, to wear tight clothes.....  But even being in this curled-up position, no hams....

Then, as an adult, it seemed like every job I had required me to sit at a desk eight hours a day.  When I was in my mid-30's I started going home every day with swollen feet and ankles, and sometimes I would have pain and swelling behind my knees.  Employers provided chairs to sit in at those desks, but they were not ever very good chairs.  Some were too long in the seat and I'm sure reduced the circulation in my lower legs.  If I had it to do over again, I would've provided my own chair or at least put a pillow behind my back to keep me from sitting all the way back in the chair.  As it was, I started walking for exercise about then, mostly because I was suffering from depression because of some things that were going on in my personal life, but it helped also with the circulation in my legs.  I have always struggled with my weight and walking helped with that, too.  I noticed my swelling problems went away when I would get my weight down to normal. 

My dad's mother had big-time swelling issues in her feet and ankles and she had one of those hourglass figures.  It wasn't so when she was younger, but by the time I knew her, she was vastly overweight.  So when I gained weight and started galumping along on puffy feet and ankles, wide calves and thunder thighs, my mother's voice began to haunt me, "You're JUST like your Grandma!".  She would say this to me every time she was exasperated with me, which was often.  She and Dad's mom did not get along, and Grandma, for Dad's sake, put up with a lot of crap from my mom.  She knew Mom had the upper hand.  Wives always have the upper hand when it comes to their relationship with their MIL, because sex always tips the scales, and Grandma, having three sons, was well aware of this.  Grandma went to a nursing home when she was in her early 80's and I went to see her from time to time.  If I mentioned to Grandma something my mom had said or done, she'd just lean back and roll her eyes.  But anyway.

Aunt Viv, who was dad's sister, had problems with her legs, and obesity, too.  Aunt Viv had hip replacement and didn't get any kind of rehab, so she reached a point where she just had a hospital bed put in her living room in front of the TV and then she never walked again.  So sad, especially when you consider that Aunt Viv just loved to throw herself into her old car and go places.  I used to love to watch Aunt Viv walk, because she went with a purpose and her whole body took part: elbows pumping, head bobbing, usually she was runnin' her mouth the whole way.  It made me smile, but not in a hateful way.  I loved my Aunt Viv.  It was just part of HER.  She said what she thought, you always knew where you stood with her, and she didn't have malice behind anything she ever did or said.  She didn't carry a grudge unless you just drove her to it.  And my mom did that.  Sheesh.  But I found Aunt Viv refreshing and worth respecting. 

So, up until I started carrying hams just below my knee, I just thought my swelling problems were because I "took after" that side of my family.  Always before, when I got my weight under control I'd have normal-looking legs.  I'm sure the "hams" came on so gradually that I didn't notice, until one day I looked in the mirror and thought, "What the hell??"  Most recently I tried on some jeans I put away because I'd gotten too big for them, and found I was able to get them on, they were loose in the hips and the waistband, but were so tight in the calf that I knew I wouldn't be able to wear them for any amount of time.  So the mirror and my jeans told me there was something terribly wrong and different than ever before.  And yes, I am well aware of what I look like in the mirror.  I did a little research on the internet and for awhile I thought maybe I'd overstretched my calf muscles and caused shin-swelling.  That was a possibility, because since all this stuff with my knee, I haven't been able to kneel in the garden and I have been bending at the waist to plant and to weed. 



That's all me in those pants.  No wrapping or anything on those thunder-calves. 

All this leads up to the additional blessing(s) I have received from BPR.  Because that employee that I spoke to about my "hams" seemed well aware of my funny-shaped legs already, and she said, "I think you should show your legs to your therapist".  And then she told me about a thing that they see a lot of people with, that's called Lymphatic Edema, or Lymphedema.  Well, I took her advice and my therapist gave me more information, and then I came home and did some research on the Internet and then I got an appointment with my doctor.

Don't get me wrong, I am very fond of my doctor.  She has treated me for many years and usually she takes pretty good care of me.  But this time, when I told her about why I have come to suspect I have lymphatic edema, and how it is that BPR offers therapy for this, instead of handing me the prescription sheet for therapy she just ordered a bloodwork panel and a Doppler of my leg veins and said we'd go from there.  Then she went on two weeks of vacation, with appointments backed up such that it would be more like four weeks before I'd be able to see her again, and all the instructions the PA had was to call in a prescription for a diuretic!!  And yes, I know doctors desperately NEED their "down time" and I'm not begrudging her that.  It's just, it was an inopportune time for me in my situation.  Especially since I read on the internet that diuretics can actually make Lymphatic Edema worse.  I went to the doctors office and asked the girls for a copy of my bloodwork panel and the Doppler.  The bloodwork panel showed that, though all my blood chemicals were within normal limits, my potassium level was in the lower part of acceptable.  Like, that's ALL I need, to be taking a diuretic that is not potassium-sparing.  There are potassium supplements that can be taken but I really think it best not to tinker with potassium levels.  The Doppler was just fine.  My blood pressure and pulse rate are really good and she heard no abnormalities when she listened to my heart.

So I mentioned my predicament to my shoulder ortho surgeon when I went for my follow-up there, and showed him the copies of my Doppler and blood panel.  He smiled at me and said, "Oh, would you like me to order physical therapy for that?" and I said "Yes!  Please."  However, then we ran into a problem in that Medicare will not pay for more than three therapy sessions a week.  They don't care what it's for, though, as long as there are doctors' orders, so the therapists put their heads together and decided they could do two shoulder therapies and one leg therapy a week, with me doing shoulder exercises at home to make up for the loss of one of the therapy sessions.  This has worked out OK for my shoulder and they've made a comparison of the measurements of my legs and have found that I have become smaller there since getting therapy, it's just that it's not a big improvement, what with only one treatment a week when normally three are done.  But starting next week, I will get three treatments since my shoulder therapy will be finished.  I have a follow-up appointment with my GP in a few weeks and I want to be able to show her a big improvement so that I can make my case.  If she will take over ordering the therapy then when my visits to Tulsa for my shoulder are over, I won't have to KEEP going to Tulsa just to get the therapy ordered for my legs. 

An additional issue is that the therapist who normally does the therapy has hurt her shoulder, and I've watched her as she does her shoulder exercises with a real vengeance, and a lot of pain, so that she can get back to work as quickly as possible.  So much so that I've worried about her a few times.  But she knows what she's doing so she's in a position to know what's crossed over the line to "too much".  There is one other therapist who can do lymphedema therapy, he has been doing the work on me this past month and I like him well enough, but he is not as experienced as she is and, well, you know how it is, we tend to want the person with the most experience.  It turns out that BPR is the only physical therapy group in this area that does lymphedema therapy.  At the orthopedic doctor's office, they told me that they don't know of anyone else, not even in Tulsa, although they have some massage therapists they sometimes send people to, if they do not want to come to Bartlesville for treatment.  Thus the blessing in my being sent to BPR for my shoulder.  Otherwise none of this would've unfolded and I'd still be thinking these hams on my legs were just wacky fat distribution. 

Lymphedema is different than just ordinary edema.  The lymphatic system does not have "pumps".  It depends on the movements of muscles and joints, so if you are sedentary and you have it in your family, that's a double whammy.  You can have it in your legs or in your arms, generally people who have it in their arms have it because some of their lymph glands were removed or injured during breast surgery.  People who have it in their legs could have it because of damage during surgery, but if it is in both legs, it's probably hereditary.  Here is a good explanation of how the lymphatic system works, and it certainly was new information to me.  Apparently this is not something that many medical doctors have had in their medical training, either.  Considering how much of our population is forced to sit at a desk all day, there are probably a lot of people walking around that have it and just think their legs are fat.
http://www.lymphnotes.com/article.php/id/151/
There are lots of YouTube videos available.  Just go there and enter "lymphatic system" in the search box if you're interested. 

Since the job of the lymphatic system is to remove fats, wastes, toxins, and cancer cells from your body, this is an important part of your (and my) anatomy, and is the best reason that I know of, at least for me, not to be sedentary.

Of course, all this has made me super-observant, now I'm seeing people's legs first and I've seen several who have legs like mine.  I'm never sure what to do.  Should I, a stranger, walk up to them and ask them if they know they have lymphatic edema?  I mean, I really appreciated being told.  But not sure if I would get that same reaction....

Next best thing:  those of you who are reading this now:  go to your mirror, look at your legs.  Do you have legs like mine???  Do your friends have legs like mine???

If you don't, THANK YOUR LUCKY STARS!!!  If you do, now you know why.  Maybe where you live, you can find someone who does lymphedema therapy.  If you can't, there are some things you can do.  Eat clean and healthy.  Walk, at least every other day.  Lotion and rub your legs in an upward motion from ankles to knee.  Lose weight if you need to.  If you can get a good pair of compression stockings, wear those.  Otherwise, it's helpful to wear stretchy yoga pants.  I'll be getting compression stockings made to fit my measurements after they get all the lumps out.  Because here's what happens, untreated:  The fluids in your lymphatic system dry out and form something similar to a gel, and that becomes lumpy places and big areas of extra thicknesses that build up over time.  I'm told this can get very painful, but I have not had much pain at all.  They tell me I'm not nearly as bad as some they have seen, and that with the proper treatment and management, I can be normal again.  (Now, don't that beat all, I've never been normal before......  Oh!  They mean my legs.  )  Heh.  I've even seen on the internet where they say that lymphedema causes the cellulite that every woman hates if she discovers it in the back of the thighs.  Not sure if that's right, but I'm going to ask them at BPR.  I've already asked them if lymphedema is the same thing as Elephantitis, and they say it's not.  I'll keep you posted how I do. 

May you all know the blessings of God, may you hear His little whispers and discern the thoughts He puts in your head, and the words of people He puts in your path.  May you use your afflictions and blessings as a way to reach out and help others.  We're all in this together, my dears.  Let my story be a blessing to you.  If you are not taking the best care of your body you possibly can, then you really must change your ways so that you can be a healthy and vibrant old person.  It might not make much difference to you now, but later on, and believe me, those years pass quickly, it might make the difference between independence and The Nursing Home.  Regardless, all the best to you.  You continue to rock on wherever you are, and I will do the same.  Hugs xoxoxo