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

2 comments:

  1. I finally found some time to sit down and read about this condition. Who knew? I currently have a large soft knot behind my left knee. No pain or anything. I am hoping when I finally get all this excess weight of it will go away. I am counting calories and Max is on a soft food diet and our grandson his here......makes planning food a tad difficult!

    Have a good day! We are still getting lots of rain.

    ReplyDelete
    Replies
    1. Glenda, that could be swollen lymph glands or could be a Baker's Cyst. There's a woman at PT that has a Baker's Cyst. I think massage helps, and ice, and exercise.

      Good to hear from you. Not enough rain here. But some forecast for several days straight, in a few days. Hugs xoxoxo

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