What is a Typical Day Like?

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What is a Typical Day Like?

Postby patoco » Sat Jun 10, 2006 2:47 pm

What is a Typical Day Like?

Discussion started by Memphis 03/31/2005

Still my mind is spinning from all the info, I have an appointment next week to go to my Dr.s soo I want to have all my questions...what would a typical day be like for me

wake up - Wrap - whats wrapping , how long is it worn

work and during day - wear my stocking the dr perscribed

night - wrap again? again same questions

Finally how the heck did I get this diease, I am overweight but who isn't. I've had no cancer, I did have an open heart surgery when I was 8, 30 years ago??

Thanks again

.........

Responses

Coyote

A day in the life of coyote......

Disclaimer: Please read if you do not have:
Full body LE, (legs stage 3), CVI with chronic venous ulcers, Chronic cellulitis infections, Lipedema, Myofascial Pain Syndrome (or fibromyalgia), Arthritis.

This may seem like a lot of work and may seem overwhelming to you, what I have listed here. I don't do everything on this list every single day. I don't always need to or have the energy to. So, I discern what's most important for that day. I try to do most of it everyday because it is the only way I will dig myself out of this virtually unmanageable case of lymphedema (complicated by the other conditions listed above)that I have.

Most lymphedema patients do not have lymphedema to the degree that I do or have it affect their lives to the degree that it does me. I am not presently working more than a handful of hours per week, I'm kind of on sick leave. Managing my lymphedema IS my full-time job right now!!! I have the hope that one day the center of my focus can be on living my life and not so much on managing my LE condition.

Its a heads up to those of you who do not have this bad of a case of LE, though. All you have to do to become like me is to do NOTHING! And LE will take over your life. I don't know about you, but I prefer to be the captain of my own ship (body). I can't tolerate being controlled by an illness like I am now for long, so I'm working hard to change my reality to a brighter future.

A day in the life of coyote......

Wake up and do kegel exercises and other mindful pelvic stretches to try to prevent the full bladder from springing a leak before I make it to the bathroom (okay, so maybe that's more than you wanted to know, but it IS a part of MY daily LE experience).
.....This can take 5-15 minutes or more.

Do isometric exercises to get the blood flowing so I can move (this problem may be because of Chronic Venous Insufficiencey or Myofascial Pain Syndrome).
.....This takes about 15-30 minutes, some days, 1 hour.

Unwrap legs and take off Tribute garments.
Inspect legs.
Debride wounds, if necessary.
.....This can take anywhere from 5-30 minutes or more, depending on how bad the wounds are.

Take shower.
Dry UP the legs (this helps move lymph the way you want it to.)
Towel rub body, focusing on moving along the lymph channels toward the lymph pump points: Armpits, inguinalds, belly and ultimately, the heart.
....This can take 30 minutes or more.

Apply antibiotic ointment, if necessary.
Put on hydrocortizone ointment if itching is present.
Lotion legs.
Apply anti-fungal cream on feet (concentrating between the toes), inguinalds and under breasts (helps prevent fungal infections).
Roll up wraps and rewrap legs, put on tributes, and/or compression leggings and shirt.
....This can take 1-2 hours.

Do lymphatic massage (face, neck, arms, armpits, belly and thighs to inguinalds.
Do ball massage on belly and back.
....This can take me 30 minutes to an hour.

Every one to two hours (ideal is every 45 minutes), do isometric exercises to stretch out muscles. Get up and move around (which is natural for me because I use the restroom about once every 1-2 hours average).

I often have to unwrap/rewrap my legs at mid day sometime because the wraps have fallen. I definately have to unwrap/rewrap m y legs at the end of the day.

I do more lymph massage and ball massage at night, though I tend to do it more based on what feels uncomfortable in my body (intuitively). I do it as long as I need to get relief from whatever pain or pressure I am feeling or until I fall asleep (yes, I fall asleep hugging my ball ).

I do breathwork when I think of it throughout the day, deep diaphramic breathing is great for lymphedema. I also do it when I do the ball massage.

I do a morning an evening meditation now as well which seems to help keep me focused on what's important. You can find the meditation at Carolyn Myss' website at www.myss.com. It involves the chakras and intent.

UPDATE: Morning meditation: http://www.myss.com./dailypractice.asp
Evening meditation: http://www.myss.com./dailypractice2.asp

Hope this helps!

coyote

.........

Coyote

Memphis,

I just wanted to address your question about how you got the illness, there are many ways to get it, there are both primary and secondary forms of the illness. Check to the left for more info. You may not discover how you got it exactly, the bottom line is that, regardless of how you got it, it is treated the same way.

Generally the reasons are that either you were born with too few lymph nodes or your lymph nodes were damaged in some way so that they are overwhelmed by the daily production of lymph fluid that your body produces.

Obesity can further overwhelm the lymph system in two ways: One is that there is a lot more body mass creating a lot more waste for the lymph system to clear, but the lymph system is the same size whether you are a size 6 or a size 46. Add having too few lymph nodes and its an accident waiting to happen. The second thing that obesity can do to harm the lymphatic system is that a lot of large people get a really big belly, if it presses down on the inguinalds too much it can crush the lymph nodes and further hinder lymph flow. So, its a good idea to make it a goal to get your weight as close to your ideal BMI as possible, its likely that it will help relieve some of your problems. Incidentally, I am considered "morbidly obese" myself, so I am simply stating this for informational reasons. There is no judgment involved. I know how easy it is to gain weight with lymphedema and how hard it is to lose weight with lymphedema, so....more power to you if you can do it!!!

I was told I was fat most of my life, when the doctors should have been prescribing MLD and compression stockings for me!!!! Lymphedema is often misdiagnosed as fat for Primary Lymphedema patients. I've also been diagnosed with Lipedema, and that REALLY is misdiagnosed as fat from overeating, when in fact ity IS fat, but its caused by this condition, not overeating, and you can not lose it by dieting. Women with a pear-shaped body and a bracelet-like effect and their ankle may have lipedema. Lymphedema often develops with a lipedema patient because of the swelling that develops.

coyote

.........

Silkie

Hiya Memphis

Thought I would tell you about a not average Day
I have a wonderful Friend Mandy She is an hour away by train
we try to get together once or twice a month
For a very un lymph like day!

I have primary in both legs am very slow wobble a lot
find getting about and shopping really difficult

So we have a girls day out
Mand doesn't mind walking like a tortoise with me
We Go Mad in Manchester or Liverpool

Do a little window shopping have a terribel schoolgirl
day out, laugh at the silliest thing
then we get to the Pub Have lunch a few glasses of wine
a little music walking back to the station is sometimes a little more wobbly take forever to get there

And im shattered everywhere hurts The next day im in the wraps all day and dropping to sleep at the frop of an eyelid

But Memphis it is THE BEST MEDICINE
a day behaving badly

I would recommened it to everyone

We live with such a rigid routine you should once a month

go for the burn

thats an alternative to my lymph days

Highly recommened bi Silkie for all her lymph family

hugs loves ill be thinking of you all

xxxxxxxxxxxxx Silkie XXXXXXXXXXXXXXXXXXXXX

.........

Memphis

Thanks Coyote and Silkie, you've replied to everything I have asked and not made me feel foolish! Thanks a million for that

.........

Tina

OMG Coyote! You just gave a fabulous description of a day that would help so many people when they go to court for SSD! I think they ask you what a typical day is like. We should put that in the SSD part of the website too for those who need help in collecting what they do in a day.

Tina

.........

Coyote

Thanks Tina,

I'm glad if my post can help someone get the help they need!

You know, I'd been working on something so I could feel more sure of myself for when or if I have to go for disability in the upcoming months and thought I'd pass it on in that post for Memphis. Kind of felt bad about it, though, cause it is kind of overwhelming to read! Especially for me, to be honest, I didn't realize I was working a full-time job at managing my LE.

The two LE therapists that work with me are only just beginning to realize how much time I spend managing my LE.....maybe they won't be so hard on their next patient that doesn't want to be bothered with it all: Its A LOT OF WORK!!! And, can be very time-consuming. I don't know how someone can NOT do it, but I understand why people don't want to!

My LE therapist just made the decision recently not to treat people who were not willing or able to wrap their own legs or get someone else to do it for them. That's sad, but I understand why: They can't get anywhere with treatment!

coyote

.........

Tina

My therapist has the same problem, actually I know the lady my therapist is treating who will not do any self bodywork, she does skin brushing but won't wrap or come in for regular appts and is always changing her appts too. I think the lady has 1 appt a month now and all the lady wants worked is her legs period. She hasn't accepted the fact she has to work on things herself in order to improve the best she can. It's a shame. I can't imagine now not working on myself, gee, I wouldn't be able to move I don't think!

I guess it's a reality we all have to face with disability. I'm going through it too. I'm 1/2 approved, part disability but not the SSD yet. I never thought I would ever stop working but it just got too hard, I was working sick all the time and not doing as good of a job when I was there than I should of. My last day I sat with my face so puffy, sinus troubles, with a massive headache pounding, trying to remember what I was supposed to do and realizing I couldn't remember how to do something I'd done for years! My dr had spoken before about disability to me, and I ignored it. That day I saw what he was trying to say. There was no quality of life struggling sick to work, home to all the LE care and then to bed and that's what I was doing not a very good job of any of it either. So it was my time to evaluate me. People never think it will happen to them but it does, and it takes awhile to accept it.

My worry is when and if I make it to old age, omg, how will I do all the LE care we need to do? I'm about 41 now and it's hard, I think about being 80 and trying to massage my foot eeeeeek!

tina

.........

Silkie

Hiya Mephis
a regular day for me

Is to live and do as much as is normal
im restricted somewhat but i try
so a mormal everyday day
plus remove wraps every morning do my skin care
massage and put supports on.
try to do the simpliest excersises(that restricted at the moment)
in the evening remove those supports and massage and wrap

I am lucky that i dont have wounds or infections at the moment
(not very often thank goodness)

I do know sometimes i cannot do the wrappings myself
then i need help hate asking hate being dependant but hate the lymph more so i swallow it and ask.

You make your days routines to work round you
i been taught to wrap (layers of bandaging) by my therapist
i prefer night to day time wear its what is best for you.

you will be fine listen to your therapist watch how the do your limbs
my bandages still fall off occaionally always are loose when i wake
but it is still the best way (i feel) to have some sort of control over the lymph fluid

hugggggg silks xxxxxxxxxxxxxx

.........

Coyote

great post, silks, i was hoping someone would jump in and give a different version from mine.....for perspective.

tina, my therapist and i just recently discussed what it would be like for a LE person to go into a nursing home, for instance, and she said that HOPEFULLY someone would be willing to be trained at the nursing home how to wrap. I wonder how often care like that gets neglected.....I know darned well, based on how many elderly people have chronic edema problems, (which often look an awful lot like lymphedma problems to me, but what do I know????) which often go untreated, that it could be a problem, depending on the facility. If it were to be an additional expense for the facility, chances are, the patient wouldn't get the treatment.

I'm fairly disgusted with the lack of treatment of chronic edema in the elderly. I know two people right now who do not want to be bothered with it and neither do their doctors, but they have signs of LE, not just chronic edema (in my humble opinion). They might well regret that decision, since their swellings are getting worse. Its like the doc and the patient are in active denial together!!!!!! (If we ignore it, maybe it'll go away or at least, not get worse. Edema is just a part of old age, after all.....I think the doc is betting on the patient dying before it becomes stage 3 hard-to-ignore lymphedema....if he's thinking that far, anyway!!! Unfortunately, the doc is usually right in this gamble, but i wonder about the quality of life of the patient in the interim...based on my experiences with LE, there is a lot that goes on internally with LE, or complications of LE, that the docs don't even recognize, like fatigue, malaise, etc.)

coyote

.........

Silkie

EPH's (elderly peoples homes)

My friend from Australia (Cathy) who now lives in Scotland
She was in charge of a group of Care homes in auz.

Guess wgo was the firstr person to wrap and massage me other than Denise and myself. Yup cathy she had Ladies in the home
with LE. Have a frien in theUSA she helped me when i was having the dreadful edema and the doctor said lose weight.

When i told her about my first visit to my practioner
she told me about the elderly she took care of and the wrapping
and how gentle they had to be as the skin on some patients is so fine and thin

In the uk we have a pick up service for the elderly where volenteers or ambulances for outpatients pick them up and take to treatment
or nurses that visit homes

I hope this will inclue lymph
not sure in the UK will find out tho thanks it does need to be looked into

huggggg silksxxxxxxxxxxxxx
patoco
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Postby silkie » Sun Jun 11, 2006 11:24 am

I would like to update my last posting here

The UK at the moment has a health service NHS that is in crisis
financially in many areas. I would be very suprised if lymph/lip will get away without cuts in certain areas of the country

However the hope very soon is for more smaller community hospitals
where outpatients clinics for many cronic conditions will be availabel
via these clinics or by District nurses(nurses that call to your home)

One of the things happening in my area is lymph therapist/practioners
are passing on there experience with lymph to local doctors and nurses

I hope this works and is on going this will mean care of lymph in the community will be possible in the future (if the money is there of course)

Oh ! i i have heard there is research going on at manchester University

Somehow the sports sciences dept are involved in trying to come up with a lightweight material that will support but not be as cumbersome as the
fabric now used Cross your fingers everyone

huggggggggggg Silks xxxxxxxxxxxxxxxxxxxxx
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Postby joanne johnson » Tue Jun 13, 2006 6:00 pm

Hi Memphis,
I also have had lymph in my legs for 25 years. It is a mystery. I have no obvious reasons to have developed it. The swelling started in one foot and went up my leg. Next the other leg did the same. My doc and I were both baffled. Never did get an answer. I always felt cheated out of an answer. Nobody said that life was fair?
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What to expect....

Postby HELENH_ » Sat Jun 17, 2006 1:48 pm

In about 3 weeks I will be going into the hospital for treatments for my lymphedema. I was diagnosed as havig Stage 2. So I was wondering if anyone could tell me what to expect during my hospital stay? Thanks!
HELENH_
 

Postby silkie » Sat Jun 17, 2006 3:11 pm

Hi Helen

I am not sure why you are going in hospital

Have you an infection?

the test they do normally are done at clinics

are you going in for therapy?

What did the doctor say?

huggggggggg Silks xxxx
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Response to Silkie

Postby HELENH_ » Sat Jun 17, 2006 3:56 pm

I had been going to a clinic for a while but both my LE therapist and myself both agreed that it would be good for me to go into a facility where I could get treatments everyday. Since I lived out of the county from where I was getting my treatments I was not getting my appointments there 2 to sometimes 3 days a week.
HELENH_
 

Postby silkie » Sat Jun 17, 2006 5:13 pm

Hi Helen

A friend went in for tratment with great success

It was massage wrapping several times a day, diet, excercise and pool

therapy she had been house bound and was last i heard going to the mall and driving.


I had at the beginning treatment everyday but the clinic was only an hour away i spent 2 hours there each day for a month

If this is what you are going in for relax and enjoy

hugggggggggg
Silks xxxxx
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treatment...

Postby HELENH_ » Sat Jun 17, 2006 5:26 pm

Hi again Silkie!

Do you kow what kind of diet?
HELENH_
 

Postby silkie » Sat Jun 17, 2006 7:05 pm

Hi Helen i dont know the details

but i did see it once and i never ate so much food lol

it wasnt leettuce leaf and spinach lol

hugggggggggg

Silks xxxxxxxxxxxxxxxxx
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