I hate to be a bother, but.....

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I hate to be a bother, but.....

Postby Teddi » Tue Aug 29, 2006 8:16 am

It seems as though I only post when I have a problem and I'm sorry if that is the case, but I am so busy trying to keep it together that I don't get over here until something scares me silly. I don't remember if I told you guys that I had a small cut from a sharp spot on the wheelchair a couple of weeks ago but it was healing really well and then a couple of days ago, it started leaking really badly and the discharge was slightly pink! All I could think of to do was bandage it well and change it often enough so that the wet surface did not lay on the skin for any length of time. I hope I did right. My legs are always wrapped in compression bandage from foot to knee and my husband thinks that the compression is pushing the fluid out of what's left of the wound - maybe he's right. I really don't know.

AND my therapist has cancelled the rest of my appointments after only three and said that we have to design and create some sort of harness to hold my belly off my groin so that the lymph nodes can drain. Then she totally confused me with a lot of sort of exercises that she said I should not do until after we come up with a harness and start spending a couple of hours a day lying head down feet up and with the harness pulling the belly up.

I'm beginning to feel sort of put upon. i know that I have to do a lot of this myself but I thought that the therapist was supposed to do more than tell you to go home and design something yourself. Unfortunately, I am not a sewer - never been any good at it. I guess I'm just looking for some support but this is getting very old and I'm getting very weary - I just feel like I pay the doctors and the therapist and get nothing in return.
And I can't go up to the Mayo where they actually have a lymphedema department and specialists because my insurance is only good here in Iowa. I tried to get my doctor to contact at least one of the doctors on the list you gave me previously but so far no luck in getting her to do that!

Oh boy, this has gotten long again - sorry.

Teddi
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Postby silkie » Tue Aug 29, 2006 2:58 pm

Hey Teddi

Come here and get it off your chest thats what its all about each of us knowing there are people we can talk to let it all out to that understand and dont say go away fix it yourself

huggggggggggggggggggggggg

ok this harness for your tum i think maybe what my mum did for me when i was pregnant might help a little


I was like an elephant when i was preggers rest a dinner plate on my lump without it hanging over the bump of course it was two hands under the lump job to support it as i got evan bigger Mum came up with this idea and it really helped. She got some very wide elastic about 4 inches
and she attached to my dresses and pants from one side to the other making sure it was shorter than the width of me across the under belly
then she just sewn the two ends to each side of the dress

i just hooked it under my lump it helped support it and i had much less back ache and no need for my hands to lift my tum up

its worth a try hun and doesnt take a sewer to do it

hugggggggggggggggg
Silks xxxx
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Thanks Silkie - but today I'm kind of down.

Postby Teddi » Fri Sep 01, 2006 10:43 am

Thanks, Silkie for the encouraging words. I have not been able to get into any of my clothes since coming out of the hospital last April. I live in very loose nightgown and there is no support there to sew elastic to but I am thinking along the lines of a pre-natal harness - if we can get it together and get it made.

I'm afraid I'm down today since my nurse was here and told me the growth on my leg is much bigger - I can viualize dragging it on the floor - and even then I doubt that I will be able to find a doctor who will do anything about it! I know, I know... I have to keep yelling for help but it's also so hard to get around and in and out of the van to get anywhere. And my husband, who is no good at organizing his time, has thrown his hands up and now says that I have to take care of all this stuff myself because he can't do everything. I don't expect him to do everything but I often wish I had a husband who would be a rock to lean on - I mean Michael is a good guy but he's certainly no rock and I'm just so tired, I really need someone to take care of me emotionally, phsycologically, and also physically in the sense of saying, okay now I've arranged this and that and our next move is this. But that will never happen so what's the point of even talking about it.

I need to take a shower today which is a major effort and I need to call and see the doctor which is another major effort. My feet have been swelling and hurting and my nurse seems to think its gout - like I need one more thing - so I have to see what the doctor thinks. I know one thing, it hurts like crazy!

So here I sit - and not comfortably- I don't even have a really comfortable chair to sit in to watch tv or eat meals. And my bench in front of the computer is basically too narrow so it's not really comfortable either. I can only manage a couple of hours at a time in the chair that I sleep in because the edge hits the backs of my thighs and becomes an irritant. I have to stop complaining - sorry everyone!
Teddi
 
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Location: Marble Rock, Iowa

Postby silkie » Fri Sep 01, 2006 12:19 pm

Hiya hun
huggggggggggggggggggggg

Thats a good idea the harness pre natal

I have not had the complications the worries all lymphers have in the USA

What i have had is the anger and frustration and i can get so angry

I am very angry now for you hun and lack of any help other than michael

I thin you find when you look back he is a rock but right now i think you must feel totally alone

I was at a stage where my legs had to be lifted from the bed for me
I hated being dependant on anyone even my family

I had never needed help or support not with day to day living and i couldnt even got off the bed to go to the loo

i got two simple excercises at first i had to have help to even move my foot lay on the bed it was flexed from the ankle to the toe down to the matress held for 5 then brought back slowly done 5 times each foot
that was it and then the heel was lifted off the bed into the air an inch if all thats can be done hold for five and slowly down to the mattress 5 times

I know it seems a useless thing just lifting your foot but it helps the fluid move and believe it or not it does hel flexability if not movement so much
it also does help if you when you lift it a little higher gives you a buzz and you feel so good that it helps the days

Takes long time and disapline just to move your foot yourself but it gives you insentive and it give you a little sense of achievement

I wish i could help lymph is a full time condition to live with All the added problems you have must be bringing you down so come scream in here anytime it does help to scream

And those little movements oh i cant tell you the sheer joy i had when I lifted the heel from the matress the fist time i imagine winning olympic gold could not have given me so much pleasure

Hang in there my friend your in our thoughts

Hugggggggggggggggggggggg

Silks xxxxxxxxxxxxxxxxxxxxxx
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I hate to be a bother but

Postby donsuzbee » Sat Sep 02, 2006 12:46 pm

Is there any possiblity of you going to the University of Iowa for any kind of treatments? My brother had to go there for his back. He lives in central IL but still no one was able to help him with his back problem like they were at U of Iowa. I have heard of other people getting help for different things at U of Iowa that no one else was able to help them with. My prayers are with you!!!!!
God bless.
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Postby Teddi » Mon Sep 04, 2006 7:01 am

That is where I've been ... several times! They do not have a department specializing in lymphedema. That's where the surgeon told me to shut up when I tried to ask questions and said that the growth on my leg was nothing but fat and to just stop eating! That's where the internist said that the lymphedema would kill me and all I could do was get ready to die.

I used tothink that it was a great place but I have not been able to get help there.

I know that the Mayo has a dept specializing in lymphedema but my insurance is only good in Iowa. And now, I am so miserable from the size of this growth and not being able to walk, that I am ready to just scream - and my heels hurt so bad when I try to walk... my nurse thinks it is gout - like I need one more thing to contend with. I'm getting to think that I will never get any better and if that's the case, I just can't live like this.

Teddi
Teddi
 
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Postby silkie » Tue Sep 05, 2006 1:45 am

Hiya Teddi

Hang in there girl hugggggggggggggggggg

I am sure Pat is searching as we speak for u
and other members to.

I am still trying to get hold of Paula for u
have you tried contacgting the NLN? See if they have any suggestions?

Or maybe a second opinion form doctors?

The gout (if it is that) can be treated

huggggggggggggg


love

Silks xxxxxxxxxxxxxxxxxxx
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Postby Teddi » Tue Sep 05, 2006 8:08 am

Silkie -

You have no idea how much I wish you were close by - you are so supportive! And I really need that now, and Pat has been terrific! I have tried to get second opinions and so far have gotten no where. It seems that they are just not that familiar with lymphedema here and I don't really know why.

I know the gout (if that is what it is) can be treated but each trip to the doctor's office is such a production and takes so much out of me that I really have to work myself up to it. Even getting to the back door with the walker just hurts so much. And Michael cannot push me in the wheelchair to get there because it is impossible on the carpeted floors to push that darn thing. And my cart has become too small for me to get on and stay on and I do not think they make a bigger seat than the one I already have!

He's supposed to run into Charles City today to pick up a mattress for me but he always hesitates to leave me alone because there is absolutely no one that I can count on to come to my aid if I need them!
Teddi
 
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Location: Marble Rock, Iowa

insurance woes

Postby suzeeq » Fri Sep 08, 2006 10:36 pm

Hi Teddi,
I understand about the insurance problems, but have you ever tried an out of network form? I am still able to work and got the form from my employer. It basically states that there isn't anyone in network that covers lymphedema and that I need to go "outside of network" for treatment. After receiving the form, I had to take it to my family physician for him to fill out. I live in Ohio, but was able to get approval from my insurance company using the form, to go out of network( out of state even) to see a specialist and to get the lymphangioscintigraphy. I'm going to the University of Arizona in a couple of weeks. I don't know what kind of insurance that you have, but thought I would suggest this. Good Luck!
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Thanks for the advice ... but

Postby Teddi » Sat Sep 09, 2006 2:07 am

I have already looked into this because I found out that even if I were visiting out of state and say, fell and broke something, my insurance would not cover it! I think because Iowa is the least reimbursed state by the fed for social security and medicare that they are very very stingy with their benefits and they really don't care what happens to you.

I have a friend who works with a girl who needs a specific kind of heart surgery - and she can't get that either because she would have to go to Minnesota and she has called everyone and begged them to help her but no dice.

I am thinking of just going to the Mayo and saying okay, just bill me (it would take me the rest of my life to pay it off but it would be worth it) but have been told that you have to have a referral to get into the Mayo even though it is the closest research hospital to us and so far have not been able to convince a doctor to give me the referral!

Teddi
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Postby silkie » Wed Sep 13, 2006 2:30 am

Hiya Teddi

I would ring the Mayo. Find out wxactly what you can and cannot do
I have also had mentioned the Cleveland Clinic no facts just
possibility.

Are u on Disability?

or Social services could help

im trying hard to come up with some way there could be help out there

Local churches or the salvation army might be of help so your husband can get out with out the worry of you having an accident

If all else fails you hun I would get myself on the local news
there are a few that do get clinics suddenly helping if that happens

Drastic i know but you need help
Maybe the adaption of the van you hubby has done might interest them

The papers? make a big noise about it
maybe someone will start to listen

Hugggggggggggggg

Silks xxxxxx
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Postby coyote » Sat Sep 16, 2006 7:55 pm

Hi Teddi,

Sorry to hear you are struggling so!!!

Got some advice for you: Start small in doing things to help yourself. Since you have problems with mobility, do the deep diaphragmic breathing exercises that are written about elsewhere on this site. This will move lymph. Do lots and lots of stretching of all of your muscles, but especially where you have the swelling the most. This simple act will move lymph fluid. Isometric exercises will move lymph, too, that's basically pushing your limb or body against something for a few seconds, then releasing and doing it again a few repetitions. You can do these exercises anywhere, in bed, in a wheelchair, anywhere. I do most of my exercises on my couch and they have definately helped. Don't give in to the enormity of your situation...it WILL get better if you do these things day after day after day. It takes great determination and strength of will and when you are depressed which is common with LE, well that justy makes it more difficult!

It sounds like Michael, your internist and your LE therapist are overwhelmed by your condition. This happens with really bad cases of LE. The most important thing for you to know right now is that there are people scattered all across the landscape who have gotten improvements from their LE condition by doing the things which have been described to you in this thread. It IS possible, Teddi!!! I would bet some of the people who have experienced success have had worse cases than yours even: There IS hope! But, it begins with you.

My LE therapist was going to implement some guidelines at the lo9cal LE clinic were that were quite scary to me because had they been implemented before I began treatment, I would have been denied treatment. They were going to refuse treatment to people over a much lower BMI than what I have (morbidly obese people have way more complications with LE and are often perceived as hopeless cases...which IS NOT TRUE!!!!!!), and they were going to refuse treatment to people who had grossly swollen limbs over a certain size, which I, again fit the category of a couple of years ago. Since then, I have lost 70 cm total from my calves alone, which is about the size of a small woman's waist!!! That's the twist to what I am telling you: I am a "success" story, at least as far as lower leg LE goes. But, it took hours a day (I had to work up to that, I started out doing much less and was able to do more and more over time) and my LE therapist told me shortly before I was discharged last time that she thought it might take me 4-5 years of continued vigilance, but that she really felt that I could turn my LE around and wind up feeling the best I had ever felt in my life. I have primary hereditary LE that was just diagnosed 3-4 years ago. Now, my LE therapist had never had a patient like me who had turned things around as well as I did when I was in LE therapy....therapists get depressed and overwhelmed, too. If they ffeel like they are fighting a losing battle, they give up, too, as do doctors.

It soiunds as though your body is just overwhelmed by lymph fluid and it takes a long, long time to turn that around. It will take getting some help to turn it around, but you can do a lot to help yourself in the meantime.

My belly was not pendulous until I received LE treatment, then it fell and my LE therapist recommended a thing like you and silks were talking about. Here are some links:

abdominal support underwear up to 5X
http://www.babybecoming.com/support_gar.html

http://www.bellybra.com/

Loving Comfort® Maternity Support
www.maternitysupport.com

and, finally, the product I bought for myself:
www.PrenatalCradle.com

I did not see these other products before I bought mine...and I will have to modify mine to work the way I want to.

These are just a few of the options available to you, as well as an bariatrics abdominal binder would be, too. Hospitals usually have back binders in stock and I was given one that fit up to 60", so they go large.

I may have more to write later, growing tired now...chin up, Teddi...you have a lot of support here...we understand. It is possible to get your condition managed and for you to have a greater quality of life!

Julie E.
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Hi guys and thank you so much for your support

Postby Teddi » Wed Sep 20, 2006 10:53 am

Thank you so much for the continuing support! I don't know what I would do without you guys and the people from my bird group who are also just terrifically supportive. Speaking of which, I also don't know what I would do without my birdie who knows when I am feeling particularly low and who will come and snuggle himself under my chin and make me feel better.

I do have some good news... the home care people who said they would provide a "mattress topper" brought me instead a bariatric air mattress that is very comfortable and I can now lie down to sleep for the first time in a very long while. I havew consequently had two nights where I have slept more hours in a row than I ever did in the chair!

Thanks for the links - I will look into the support right away. And I also wanted to apologize for not getting right back to you but I was really sick for several days. When I start to feel ill, I get the most awful chills and gas and pain and all I can do is huddle under several blankets and whimper. But so far it has always passed eventually. No one seems to know what causes it and it frightens me terribly.

Must go - I have a shift to work. Now that M and I are both working on our computers, things are not financially as terribly tight as they were but still not even close to enough to purchase private insurance. And there are so many things that I need to save up for if I can - and things designed for morbidly obese people are ten times more expensive than regular things! I talked to home care about a chair but they do not provide them - and I have been told by every doctor that I should be either swimming or soaking in a spa with jets - talk about out of the realm of possibility! And it is starting to get cold already and fuel prices have doubled again - I think our first priority will be to keep from freezing to death this winter!
Teddi
 
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Location: Marble Rock, Iowa

Postby silkie » Wed Sep 20, 2006 12:19 pm

WTG Teddi

You sound so much better even in the typed word it leaps off the page

Swimming is the best thing Teddi

Lots dont because of apprearance I can undetand i been down that road

i think most of us have

The pool near us allowes DLA (dissability claiments)
to go in with the special needs adults it is wonderful
one you get a cubicle to take your time in and able to turn round in

but the best is the people you are with they dont care what you look like they just having a great time

and that is all there interested in

If you go there is power walking for non swimmers
even the mums club dont mind you joining in
and if you feel yukki in a costume t shirts and shorts are ok

I think coyote got use of a hotel pool at one time

But i think the best way to try and see it is this is helping me have a life again and if people want to stare at me than swim sod em
shake ya ample bottom at them or better still jump in when there passing
soak em

Water excercise helps support your body is the best thing for us lymphers
if you can Teddi go for it

not for anyone else doctors no one but for you you will see improvement

hugggggggggggggggggg

Silks xxxxxxxxxxxxxxxxxxx
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swimming

Postby Teddi » Wed Sep 20, 2006 3:46 pm

Hi silks and again, thanks so much. I would really love to swim - water is my element anyway- I swim like a fish! When I was young I was always more comfortable either in the water, on horseback or on skis! I can't believe I've become such a lump!

Anyway, I live at the end of the earth - there are no pools here that I could access and as for wearing t shirt and shorts or whatever, the lump makes it impossible to get into anything - I live in nightgowns and dresses - nthing else works. Maybe when I get it down some, I'll be able to get back into clothes again.

I am trying hard to earn enough money to build a thermo spa inside the house - it wouldn't be as good as swimming but I think the action of the water would help. What do you think?
Teddi
 
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Location: Marble Rock, Iowa

Postby silkie » Wed Sep 20, 2006 5:33 pm

Hiya

best person to ask and i bet she will reply to this is lisa aka
gottahavesun She has experience of the pools

and teddi Make your own Tshirts and shorts never to late

and they would be comfortable cos you would make them roomy enough


hugggggggggggggggggggggggg

Silkie xxxxxxxxxxx
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Postby joanne johnson » Thu Sep 21, 2006 6:29 pm

Hi Teddi,
I'm glad to see that you got the new mattress so you can sleep in comfort. Quality sleep really is not a luxury but important to get adequate rest. I hope that your situation improves and you can enjoy a good healthy quality of life. Continued good luck to you and your husband! :)
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update

Postby Teddi » Sun Sep 24, 2006 2:19 pm

Sorry I haven't been posting for a while Yesterday was my birthday and M was trying to do something nice for me. I think he was a little shook up because on Thursday Last , I was watching survivor and Michael says I was so disoriented, that I thought I was there - kept telling him we had to finish the shelter and build a fire. My temp peaked at 104 but then in the middle of the night after gallons of gatorade and lots of ibuprophen, it broke and I started to sweat and by Fri am I was feeling a whole lot better. Yesterday, I started out feeling great but then he made a tuna noodle casserole for dinner (which has always been my favorite since I was a little kid) .. and I got so sick again! Nausea and diarhea and really bad gas. I could not sleep because I just couldn't lie down. Eventually I sat in my chair and vinnie snuggled under my chin - he's so soft and warm and loving that it really helps - (although he should have been sleeping by then as well but won't settle down if he feels that I am ill). I finally fell asleep that way and now I feel okay but just sort of fragile.

I don't understand it - why am I getting sick so often and what is causing it. my doctor just says there are some nnasty bugs going around - but I don't understand why I seem to pick up anything and everything!
Teddi
 
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Location: Marble Rock, Iowa

Have you had your blood checked lately?

Postby donsuzbee » Sun Sep 24, 2006 8:57 pm

Have you had blood checks lately for any kind of infection? Sounds to me - Dr. Wannabee - that you are battling something.
God bless!
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So what do I call me?

Postby Teddi » Mon Sep 25, 2006 3:42 am

Not only do I get a blood test - they check it every week! And no, so far they have not discovered anything brewing in there. I'd like to know if anyone else has been through this kind of thing?


I was thinking..... what do we refer to ourselves as, I mean lymphedema people is quite a mouthful so am I a lymphedemiac ???? What do you guys all think?
Teddi
 
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Location: Marble Rock, Iowa

Postby silkie » Mon Sep 25, 2006 2:29 pm

Hi Teddi

Its only my own thinking

but i know when my legs are bad and very swollen i feel under the weather

I wonder if its the toxins from the lymph fluid in my body

The tiredness to . It always seems worse when im swollen or ifections
are in the body.


You are so swollen at the moment it's just a thought


maybe the sickness etc is from the toxins

lots of water teddi

Hugssssssssssssssssssssssssssssss
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silkie
 
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thanks, silkie

Postby Teddi » Mon Sep 25, 2006 10:06 pm

You know, that makes a lot of sense and yes, I will drink even more water.
Teddi
 
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