Thursday, August 3, 2017

Lymphedema, General Health, and Weight Loss Report for July, 2017

July was a horridly long month, with hardly any rain, and temperatures into the triple-digits.  We were, except for during the early mornings, held captive in our home by the weather.  And Hubs' constant TV watching got on my nerves.

They have reported on TV that they have found mosquitoes that are carrying the Zika virus in Tulsa, so they are probably throughout the nation now. At first I thought about how I am well past child-bearing age and so it didn't really affect me, I'd heard that some people that had the virus didn't even know they'd had it, so it's not a health risk unless you're pregnant.  But then I thought about how we don't know enough about it, and I wonder what the length of time is that it affects the human body?  Can it, for instance, bite a child and affect all that child's offspring when the child has grown up?  To think further on this subject boggles my mind and is frightening.  I saw a thing on TV about how they are learning to modify the DNA in a fetus and perhaps that will be useful in allowing a Zika-infected parent to still produce a normal child.  Whatever normal is.  It would be wonderful to be able to "cut out" the parts of DNA that cause the child to have serious deficiencies but I wonder if the human race is selfless enough to not turn it into a curse.  Or to make so much money off it that we end up with a country full of "Designer Babies".  [[[[shiver]]]]

I started taking vitamin B1 back in early March, as I had read an article that said that people that went on an excursion in the Florida swamp were given B1 patches to wear on one of their arms, and it was reported that they received no mosquito bites.  I always wonder, when I hear something like this, whether it is actually "a breakthrough", or just an infomercial to sell the product, because somewhere in some lab they've made so much of it that it'll all expire and be wasted if lots of people don't buy it.  But so far I haven't even seen a mosquito around me.  Mosquitoes just love me, by the way, and they tend not to be interested in Hubs.  Which makes sense.  I am running my mouth all the time, and Hubs hoards his words like they are gold.  They say mosquitoes are drawn to carbon dioxide that is expelled when we talk.  However, we are not collecting water in the above-ground tanks this year, specifically because they do not drain out all the way, ever, and even when we keep the lid on, mosquitoes seem to be able to squeeze in to deposit their eggs on the water surface.  Before we know it, those water tanks with only the morning dew trickling into them from the roof becomes a mosquito hatchery.  Mosquitoes are not the only insects that have the power to bite us and make us miserable with itching, however.  Chiggers abound and the little critters go for anywhere on the skin where there is a crease or a fold.  Need I say more.  This is the face of Oklahoma that I hate.  Oh, for the days when a mosquito bite or a tick bite was only an annoyance.  Just another sign that The World, As I Knew It, has already ended. 

I can attest to the fact that B1 does absolutely nothing to deter chiggers, though.  My therapist raises horses and she tells me that what works for her is a dryer sheet in her sox.  I've tried that, in conjunction with showering and putting on different clothes when I come in for the day.  I can't swear that it works, because invariably there's something I've forgotten and I make a quick foray out there later on.  I could be collecting chiggers at that time.  Hubs mows and weed-wacks our land, but the garden is a challenge as I am having difficulty keeping it weeded and there are only certain places where he can use the weed-wacker. 

*****************Update, August 17, 2017***************
Now that we've had all this rain, I can attest to the fact that having taken vitamin B1 (Thiamin) for several months has not helped keep the mosquitoes off me AT ALL.  We are trying to be careful not to have anyplace where they can breed except for maybe the 3 birdbaths that we keep on the property.  My thinking is that maybe mosquito larvae will be eaten by birds when they come to drink the water.  But I could be all wrong with that.  We have ponds all around us and so it probably does not matter whether we have standing water here or not.  I've known mosquitoes to breed and incubate their young in tall, damp grass.  Even at that, Hubs and I have been trying harder to keep all that to a minimum.  *Sigh*.  I'm considering stopping taking it, being that it is apparently not working to ward off mosquitoes, but when I looked it up, I found it's an "anti-stress" product, and that it helps regulate metabolism, and keeps your mucous membranes healthy.  I might've accidentally come upon something to help me with my dry-eye syndrome, because I've noticed in the last few months I haven't had to use my eyedrops as often.  Here's what Livestrong says about B1:
http://www.livestrong.com/article/373790-vitamin-b1-benefits/

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Enough of the ranting and on to the business at hand.

Unfortunately I did not quite meet my initial target of 190 for this month.  I was even kinda hoping for 185, but I knew that was probably not possible.  I made it to 192.0.  In my younger days, I could lop off five pounds in no time flat, but things are different now that I'm older.  And somewhere along the way I think I said that even a pound a week is still progress, and comes out to 52 pounds in a year.  We tend to think of a year as a long time, but really it is only a blip in time.  So I'm grateful for the loss of 5 pounds for July.  I have had some maddening plateaus and up and down spikes.  My lymphedema therapist says it's the lymphedema.  That doesn't seem right to me because I don't have a sudden drop the morning after I've had therapy.  Hubs thinks it's the weather, barometric pressure, and so on.  But I didn't seem to be losing when the weather was nice, and the last pound I lost was in the middle of a heat wave, so not sure about that, either.  It's possible I have been eating too few calories, I know that this will make the metabolism slow down.  It's all very complicated, how the body works, and we all need to appreciate what an awesome miracle our bodies are, the way they try so hard to protect and heal themselves.  We don't think of the skin as an organ, like the heart, lungs, liver, and so on, but it is.  We don't think of the "gut" as a second brain, but I've heard lots of people say that, indeed, it is.  As I write this, it's August 3, and I started the month with an additional pound lost.  So I'm going to set my goal for 185 for the end of August, knowing that it's a reasonable goal, maybe I will fall a little short, but any progress is still progress. 

I added half a homemade 100% whole wheat "bun", and, like Oprah, I do love my bread.  Not that spongey white crap that so many of us were raised on, but good, substantial, honest bread containing only four ingredients.  Some days, I have even had the other half of the bun before the day has ended.  Still trying to have mostly proteins and vegetables for breakfast and lunch and then some healthy carbs at supper, it runs about 350 calories per meal, with maybe a snack, if I really feel like I need it, in the early afternoon usually, of something like a salad containing a little cheese, dressed in a combination of a small amount of good oil and some cider vinegar, and topped with unsalted sunflower seed, or chia, or some hemp seed hearts, something I'm trying out and liking.  I didn't think to take this picture till I'd already snarfed down half of it, but you can get the idea from what's left.

Hemp seed is very nutritious and no, if you plant the seed it does not grow into marijuana, in case anybody is thinking that.  It's related, I think, but not illegal to grow or buy, and what the hell, maybe one day I might buy some seed that isn't hulled and try growing some, just to see what it looks like.  I just do not understand why we, as a nation, spend so much time trying to protect people from themselves.  Don't we already have enough to do, trying o keep people from hurting defenseless animals, children, and EACH OTHER???  Who would anyone be hurting if people were mellowing out on their own back porches on something they've grown in their garden?  Certainly better than some things people do that is perfectly legal, if you know what I mean.  If you think back to Prohibition and all the alcohol that was confiscated and destroyed, it looks kind of like now, how they search out secret fields of marijuana and set them on fire.  I fully expected that when my generation got to be old and all the people of earlier generations had all died out, that legalizing marijuana would just happen naturally, and taxed to the nth degree.  But so far only certain states are legal and it's a bit of a problem because it's still illegal according to the Federal government.  We can make beer and wine in our homes for our own consumption, and nobody ever seems concerned about the alcoholism that is rampant in our country.  Even though it still does ruin people's lives and that of their families, and can make for one helluva accident out on the highway.  A young adult can have too many drinks at a party, get behind the wheel and end up in prison for murder.  Now, that's pretty scarey.  And it's not like we can't grow something harmful in our gardens, there are lots of things that come to mind.  I wouldn't use marijuana because it makes people think they're hungry and if I really wanted to be in THAT state, which I don't, all I'd really have to do would be to eat some kind of sugar-laden food and I'd be there.  If it wasn't for that, hell yes, I'd try it.  I'd like to know how it feels to be "mellow".  Heh. But seriously, all this illegality just doesn't make any sense since our country is led around by The Almighty Dollar.  People will cheat you, lie to you, put your health at risk, and take advantage of the most vulnerable members of our population, in their efforts to amass a fortune or some other such thing that they can stick out their chest and brag about.  Sad.

I'm reporting on the lymphedema situation in the same post as the weight loss, because I am convinced that weight loss is a valid treatment for lymphedema, and that being obese can be a contributing factor in the development of this condition.  Most of the people that I see being treated at BPR for lymphedema are much more overweight than I am, even.  So here's yet another reason to not be obese.  I often think about what a fool I have been, saying to myself that I am robustly healthy and unaffected by weighing more than I should, and that "If I don't mind, it don't matter".  "I am built like a Grand Piano," I would say.  What a Dumb-Ass.  My family could never seem to get together without there being this huge amount of food being passed around, and it seemed like everyone thought it was an insult to the cook if they didn't just gorge themselves.  Oh, what my in-laws must've thought about me when I brought that same attitude to the dinners they put on!  They all were in the habit of eating normal amounts and saving what was left for another meal, and here I was, stuffing as much in as I could, trying, unsuccessfully, to make a good impression, without a clue. 

I am wearing compression stockings every day, removing them at night so that my legs can "rest".  But I've had a lot of trouble getting a good fit.  The first pair of JuZo Silvers that they got for me at BPR were so tight all over I just could not stand to wear them.  So they took them back and got me a pair of JuZo Softs, two sizes bigger.  Both pair had top bands that were so narrow and tight they were like wearing rubber bands.  The Silvers had silicone dots on the inside of the band, which was supposed to keep them from rolling down, but it seemed like the band was even less stretchy because of all those dots.  So I asked specifically that there be no silicone stuff on the inside of the band of the second pair.  Apparently the dots are there to keep the band from rolling up on itself and making itself into that rubber-band thing that I spoke of earlier.  But instead of making the situation better, it just made things worse.  So an unacceptable situation either way that could have been prevented from the git-go if JuZo had only made the cuff wider.  Considering that these things cost $80 plus, you'd think JuZo could justify the use of a little more stretchy yarn for the cuff.  What's up with that, anyway?  We people with Lymphedema HAVE BIG LEGS!!  If we had normal-looking legs we wouldn't be buying their product.  I made something to go under the cuff to keep it from digging into me, and that helped a lot, but personally, I don't think the band is ever going to get broken in enough that I won't have to do that.  And the seam has broken, showing untethered loops, in a couple of spots where the band is secured to the stocking.  I, being a quilter, had a bottle of Fray Check, so I repaired the spots while the band was stretched out on my leg, but I'm sure the stockings won't last as long as they would have if I hadn't damaged them.

So, you know, I really think I might've been led by God to look on Amazon and see if I could find anything I could comfortably wear.  I'd already looked at JuZo's website and they require the use of an Authorized Dealer and won't even tell you prices.  Not that I want to try anymore of JuZo's products, anyway.  I got signed up for a free month's trial of Amazon Prime, I don't know how that happened.  Maybe God pressed a button somewhere.....  My friend Carole told me to be sure I cancel before the end of the trial period or I'll get charged for a year's membership, so I dinked around and found a place where I could ask them to send me a reminder two days before the trial period expiration.  Thanks, Carole....  And really, I'm kind of liking Amazon Prime.  Never any shipment costs and they say returns are no problem when you have Prime.  Shipping alone can really add up.  I actually had earlier made out an order to Bob's Red Mill, their website said "Free Shipping" if the order was more than $50.  Well, mine was, but I had a set of four 27-ounce packages of a few things on my order, which they call a "case", (imagine that) and discount the cost a little.  Turned out, shipping wasn't going to be free for the "cases", and they wanted to tack on $97 in shipping.  Unreal.  So I didn't take the processing of the order past that point, and got my Bob's Red Mill stuff through Amazon instead, with free shipping no problem. 

But anyway, what I found in the way of stockings was this:
https://www.amazon.com/gp/product/B009STLCL0/ref=oh_aui_detailpage_o00_s00?ie=UTF8&th=1
Notice the price:  $25.08.  I could buy three pair for less than what I paid for my ONE JuZo pair.  There is not a TruForm size chart on this page, at least not that I could find.  However, there is one on this vendor's Amazon page. 
https://www.amazon.com/Truform-20-30-Compression-Stockings-X-Large/dp/B000A33GCQ/ref=pd_sbs_121_1/140-0744447-8230801?_encoding=UTF8&refRID=A2EVB507KPY78F17WBWR&th=1
I actually found them first, and ordered their XL size.  Unfortunately, if you are not 6' tall with a size 12 foot, the XL stocking is going to be too long, both in the leg AND the foot.  I didn't find out that TruForm offers it in XL "short" until I saw that on the package the stockings came in.  So that first link I inserted in this paragraph is that of a vendor that DOES sell that size. It's open toe and I actually wouldn't want closed toe.  Notice that wide band just below the knee.  So when I ordered, I said a little prayer that the product would look like the picture.  The order arrived, the socks fit, the top band is comfortable, and is knitted in, not sewn on.  Hubs commented that the beige color actually was a lot closer to the color of my skin than the other stockings, and I agreed with that.  The texture is not as smooth, but that didn't bother me.  They weren't any harder to get on.  I wore them comfortably all that day from the git-go, though I did notice the band that goes across the foot was a little tight.  I solve that problem by folding it up onto the arch of my foot, where I am narrower and somewhat bony, and it doesn't bother me much.  So.  Stocking dilemma solved.

The only other thing left up in the air was the lymphedema pump that BPR said Medicare would pay for, with the proper documentation.  Having one allows me to manage my condition at home and remove the necessity to keep going out for therapy.  I can see how it would be in Medicare's best interests to do this for us.  BPR has an agent, I guess he works for the company that sells the pump, but no one has ever said.  He gets the pump approved for payment, and then orders it.  My situation is a little difficult, since my family doctor AND the orthopedic doctor, are both involved.  So all that caused a delay.  I had to get my family doctor back in the loop after she got back from vacation, but she was most agreeable and expressed the desire to do whatever she could do to help me.  She has been my physician for 35 years and I have told her often how much I appreciate her taking care of me in all those years.  I do realize doctors cannot possibly know everything, they aren't taught about lymphedema in medical school, and now that more is becoming known about it, our doctors can't keep up with new stuff and still have time to see patients, so I shared with her everything I had learned and she accepted it without being offended or any of this ego stuff I have gotten before from men doctors.  I got above my Medicare cap for physical therapy for the year but my therapist said if she were to let me go before I get my pump, my condition would probably regress.  So I went in once a week for about another month to try to maintain.  They haven't asked me for any money yet, and have said they'll discount the cost since I have a medical need and am having to pay for it myself.  I could ask them for a "running total" but I'm kind of scared to find out until they actually ask me to pay up.  Keep the shock all in one bundle.  I really didn't feel like I had much of a choice at that point. 

About two weeks ago I dinked around a little bit on Amazon and found a lymphedema pump, including a "boot" for each leg.  And it's only $400.  Amazon's vendor says it's "designed for personal use and is not intended to replace health professional care".  However it also mentions that "physicians, chiropractors and professional therapists are choosing to have this product in their offices".  So I seriously considered getting that one.  It's had a lot of reviews and almost all of them are five-star.  That's here if you want to see:  https://www.amazon.com/gp/product/B01N6E0CNV/ref=ox_sc_sfl_title_1?ie=UTF8&psc=1&smid=A6AVNXH0138GC

FINALLY, my pump came in and the agent brought it to me at home and showed me how to use it today. 



Here is a picture I took today.  I don't have compression stockings on, these are just my yoga pants, as in the first picture I took.

Here is the first picture I took, that was posted in a June post, I put it in here for comparison purposes.  I'm not sure if I can tell a big difference or not.  But I've only been getting treatments once a week for this last month.  Maybe that has something to do with it.

Robert, the man who brought the machine, told me I should use it twice a day, every day, for an hour each time.  That's a far cry from twenty minutes once a week, or even, as we were doing before I reached my Medicare cap for treatment, twenty minutes three times a week.  I really expect that after a week or two I'll be seeing some big improvements.

Robert told me the machine has a 3 year guarantee, with a one year guarantee on the boots.  And I can get a new machine from Medicare every five years.  They bill Medicare $1200 for it, but that doesn't mean that's what Medicare pays.  That debunks something I saw where someone said Medicare was billed $10,000 for it.  I didn't want to believe that and I'm certainly glad it isn't true.  According to Robert, they are not sure whether the machine that can be bought on Amazon is true to the pressures that are exerted in the boots, or whether it will last as long if it is used regularly.  I don't know.  I do know the controls are kind of cheap-looking on the Amazon product.  But if I didn't have Medicare or insurance of some kind, that machine would certainly be better than nothing, and something I could manage myself.   

As I said before, I really appreciate BPR for the part they played in all this.  If they hadn't done a "We see this all the time" informal diagnosis when I was in there for therapy on my shoulder, giving me a starting place for dialog with my doctor, I may have had to rock along with this until it became much worse.  They see people whose legs are so big and heavy they can't lift them, and it pains them to walk.  Their skin has deteriorated to the point where it is stippled and red.  Or gray and folded like an elephant's legs, with cracks where bacteria breeds.  Oh, so grateful I didn't have to go there. 

I have one more visit to BPR, where they will take measurements to see if my legs have gotten any smaller since they last measured.  It's really more for their records than it is for me, but I'll ask for a copy so I can share it with my doctor, as she has the measurements they took in late May and again in late July, which showed a reduction but I can't say how much in inches because they measured in centimeters.  I was smaller in the second measurement, we'll just leave it at that. 

Robert said some people that use their machines regularly are able to go without their compression stockings.  It will remain to be seen whether I can do that or not.  I hope I will be able to. 

Well, that about wraps this one up.  We're rocking on.  Hope you are, too.  xoxoxo

4 comments:

  1. Good luck with the machine!

    Also a loud congratulations on the weight loss. The salad looks very good. No matter how little you loose as long as you are loosing, you will get to your goal. I admire you.

    I hope you got this latest rain; radar showed your area in the midst of the front. We got a wonderful 5 inches over two days!

    ReplyDelete
  2. I forgot to tell you have have been on Amazon Prime for a few years now.
    I love it and it is worth every cent. I do a most of my shopping (not groceries except for some specialty items) and the few times I have to return something, it is so easy and normally I do not pay return postage.
    They have emailed me what my savings were using Prime last year and it was substantial.

    I am getting ready to shop for bread flour.

    ReplyDelete
    Replies
    1. Thanks for your input about Prime. Our neighbor across the road uses it all the time, buys even bathroom tissue by the case so she doesn't ever have to shop for it, they just send another case automatically every so often. She loves the convenience. I may go ahead and pay for it, haven't decided yet.

      Delete
  3. Yes! Hooray! We got 4 inches in a matter of a few hours. Oh, you should see how things are perking up. A high of 80 today and expected highs for the rest of the week in the low 80's. I think I've died and gone to heaven. They had a tornado, they think, in Tulsa. Lots of damage. But fortunately very early in the morning before most people were up and around.

    Winston Churchill said "Nevah, NEVAH, give up!" I do believe no battle can be won without persistence.

    ReplyDelete

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