Feeling a little depressed today

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Feeling a little depressed today

Postby Shirley Hogan » Sun Aug 06, 2006 10:56 am

:) I am still so new to this world of lymphedema, and it still is scarry to think later , I would have so many problems. But I must not worry like I have this past month. What a shock this disease is. I have battled different cancers and most people are amazed that I am still here on this earth. I just feel it is so unfair of the medical world to leave us with so much to face each day, and not find out more, after all man has been to the moon! :roll: And too why dont the doctors tell us about lymphedema before they stuff us with chemo and burn us with radiation. Why do they not let us decide if the alternatives are worth the treatements. If they dont tell us about the side effects we cannot decide for ourselves what we wish to have. It is bad enough that we get cut upon . Then at the end of it, we are to go back to our primary doctors who know beans about what is going on . I am just angry that they do not take more precaushions when they do stuff. I had 4 different cancers in 2004, so I am feeling a little bitter I guess. My legs are down to normal now, and very little pain, so guess I should feel greatful. I wear the compression hose, and wrap my leg as best as I can. Still dont know if it is right. When I take the wraps off my leg looks like it went through a wringer, and spend the day trying to get it back to looking right. I am not even sure I am pushing the lymph in the right direction. It looks as though I have pushed it up into my stomach area, now , what do I do. The therepist is nice but she just doesnt show me how to do it just right, just says things and leaves me to guess a lot. But I live 30 miles from Houston and thanks to this site , I can go to MD Andrson for Care after Cancer, maybe they will tell me more, and instruct me more. Well sorry for venting but people dont want to hear about this stuff, and I will keep silent too. and maybe here is the only place I have to talk about it. Thanks to all of you, keep up the most wonderful help, hugs Shirley
Last edited by Shirley Hogan on Sun Aug 06, 2006 11:21 am, edited 2 times in total.
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I am feeling depressed today and had to except what is!

Postby Shirley Hogan » Sun Aug 06, 2006 11:11 am

I edited my previous post. I am feeling better now that I wrote it down. I really didnt know how much this effects the mind. It is just as devastating as getting the cancer. I hope I have not affended anyone. I do promise to be more uplifting in my posts.
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Postby patoco » Sun Aug 06, 2006 12:49 pm

Hi Ya Shirley :)

You didn't offend anyone and I'm glad you felt comfortable enough to share with us. I think you actually said eloquently and honestly what most of us feel and go through.

Even for those that have had lymphedema for decades, this stuff will still surprise you and through you completely for a loop. I've been struggling and struggling with all kinds of feelings this year as m body becomes more bloated, more painful and as doing something as simple as putting your shoes on has become a major endeavor.

Everything is going wrong medically and nothing seems to be going in the right direction.

But, that's why we are here for each other. Our family isn't just about getting good solid information - it's also about caring, reaching out, listening and encouraging.

Look at our page of self massage and it tells basic on abdominal massage.
I do it all the time and it has helped at least keep the lymph from totally getting out of hand.

Here's a big sunshine hug to ya :wink: :D :!: :!: :!: :!:

Pat
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Thank you for the nice post Pat

Postby Shirley Hogan » Sun Aug 06, 2006 2:23 pm

I so hope you can get some relief Pat, I know that for now I am lucky. It is sometimes very hard to put it all to the back of your mind. But you are an inpiration to us. I feel much a better guess the mental part has to learn to except, The outside world just does not know how lucky it is to wake up with out a swollen body, and their cruel remarks to some is uncalled for. But that is part as you said in another forem guess we are here to teach them . Smiles to you tooooo!
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Postby silkie » Mon Aug 07, 2006 5:55 am

Hi Shirley

I thought your posting was good

I have not had the battles you and our Pat have had

but I have battled ignorance ,indifference, intollerance and disbelief

Its a good thing I enjoy a good ol battle or two

Thanks to Pat and others with the same determination

I think those in ther lymph corner are finally moving the lymph world

forward taking it to the World and shouting about it

Shouting for recognition and for treatment for LYMPHEDEMA for all

We just have to keep pushing and demanding it will happen

huggggggggggggggg

Silkssssssssxxxxxx
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Postby uscmom » Mon Aug 07, 2006 10:54 am

Hey I am still new to this site myself. And I get depressed alot too. I just wanted to let you know that you said the doctors should have warned you that you may get this from the side effects of the chemo or radiation. I had neither just a full masectomy and four lymphs removed. It can happen to any of us. I really want to see if there could be a precaution way of getting this like maybe starting the massages right after you recover from surgery so the fluid never has a chance to build up. I was told nothing about this and I'm sure there are many other women not being told. It took me almost 3 years to be diagnosed with it and it has really been hard with the hot weather since diagnosed 4 months ago. I feel i can't get it under control and wonder if I ever will. I feel I have no one to talk to about itwith. I've been released from my therapist and seem to be getting worse not better. I'm trying to find some kind of support group around but haven't seem to have any luck. I hope I am not discouraging to you or any one else. I just want to help others not have to go through this worrying if it is going to get worse. If you need some one to just talk to email me @ ttyson63@yahoo.com.
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Postby silkie » Tue Aug 08, 2006 12:52 am

Hi Uscmom

My friend had a mastectomy Already with information about
lymphedema because of me and Us talking about it when she knew and was confrimed breast cancer. She was very happy and suprised that
Not only was she informed about it but She was given a set of excercises
to help fluid retention and although with removal of lymph nodes
the risk is great of possible lymph the excercising can help

She also understands that the lymph can happen anytime after such major remover of lymph glands

So the excercise routine in part of her daily life now

Just wish all the infomation was given it could help many people



hugggggggggggggggg


Silks xxxxxxxxxxxxxxxxxxxxxx
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Postby uscmom » Tue Aug 08, 2006 11:31 am

Thank you I'm glad your friend was able to get the information. And she is doing the exercises. I would like to see all bc patients get this information and make the excises part of their daily lives because it would be alot easier doing them than having to deal with the lymphedema everyday. uscmom
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Postby PamelaS » Tue Aug 08, 2006 3:58 pm

Hello All,

I know I've posted this before, but one of the problems with doctors, both primary and oncologists, is that they really don't give you a lot of information on side effects of cancer treatment. Quite a few of them seem to know little about LE or how you can acquire it. I wish they would make it their business to be informed and let their patients know.

LE can come about for us with lymph node removal, mastectomy, radiation or any combination of the above.

The most helpful person to me, by far, is my PT for LE. She is an absolute lifesaver. She even took the time to teach my husband MLD and the wrapping - in case he ever needs to help me with it.

Pamela
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Postby georgy » Tue Aug 08, 2006 5:00 pm

IT is very depressing. I am a teacher and my legs swell whether I wrap them or not (although not as bad) If I do not wrap them they hurt like crazy and swell alot. Hang in there! :D

georgy
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Postby silkie » Wed Aug 09, 2006 3:16 am

Hi Everyone

Im going to be on my soap box here

I am so Fed up with lymphedema being a SECONDARY OR PRIMARY OR HEREDITORY ETC ETC ETC Condition.


LYMPHEDEMA IS WHAT WE ALL SUFFER FROM WE ALL TREAT IT THE SAME WAY MLD WRAPPING SKIN CARE AB'S ETC ETC


IF YOU GET CELLULITIS IT IS NO DIFFERENT FOR PRIMARY OR SECONDARY IT IS CELLULITIS


WE HAVE LYMPHEDEMA ALL OF US WHY IN GODS NAME CAN WE NOT STOP PUTTING IT IN LITTLE COMPARMENTS

DO YOU REALISE WHAT AN IMPACT LYMPHEDEMA WOULD HAVE ON THE MEDICAL PROFESSION IF THEY TOOK THIS CONDITION AS

LYMPHEDEMA WERE OUR OWN WORSE ENEMY

WE SEPERATE OUR CONDITION BY LABELLING IT BY HOW WE GOT IT

WE HAVE LYMPHEDEMA DOES IT MATTER HOW WE GOT IT SO VERY MUCH? IF WE CAME TOGETHER AS SUFFERERS OF LYMP[HEDEMA

WE MIGHT HAVE MADE A LOT MORE PROGRESS TO GETTING

MEDICAL CARE FOR ALL AND NOT HAVE TO FIGHT TO FIND A DOCTOR THAT HAS A CLUE WHAT IT IS OR WHAT TO DO ABOUT IT

WE WANT LYMPHEDEMA TO BE RECOGNISED

MAYBE IF WE STOP PUTTING OUR LYMPHEDEMA IN LITTLE SECTIONS IT MIGHT BE

SORRY I JUST FEEL SO STRONGLY WE ALL KNOW WHAT LYMPHEDEMA IS LIKE WE ALL TREAT IT THE SAME WE ALL HAVE THE SAME ISSUES

YET WE SEPERATE LYMPHEDEMA INTO SECTION
YOU BRING THOSE SECTIONS UNDER ONE NAME LYMPHEDEMA
AND WE JUST MIGHT START MOVONG MOUNTAINS

sILKS XXXXXXXXXXXXXXXXXXXXXXXXXX
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You are so right Silky

Postby Shirley Hogan » Fri Aug 11, 2006 6:35 pm

It is the condition, not how we got it for sure. And you are also right we all must try to help get it recognized. In todays world it just is amazing how little information is out there about this disease. Some of my family members dont even know what the lymphatic system is and how it works. Wow, and doctors have been educated to at least know its existance. Myself included on not knowing about this disease before I had it. thank you silky for you reply. Shirley
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Postby coyote » Sun Aug 13, 2006 5:16 am

Hiya silks,

love it when you get on soapbox: You go girl!!!! :D

It is important, though, that those of us who have had LE remain undiagnosed for a long time, to decipher where it all began and I think that might be why some of us who are primaries tend to compartamentalize. I don't know why secondaries would. I do think we all have a genetic predisposition to it (which some of the current research indicates may be the case), which definately levels the playing field, any way you want to look at it.

For instance, I believe one my first signs of LE may have been when I developed hives as a child. Welts are normal with hives and a certain amount of swelling in general is normal with hives, but not swelling of limbs to two sizes bigger than normal! When a friend of mine recently developed hives, it was hard for me not to scoff at her symptoms: Some little squiggly lines and some itching: Big deal. Well, her doctors thought it was! The swelling I experienced was not normal for hives.

Another example is that I have had rosacea as long as I can remember and it was on this site that I found the link between rosacea and LE. I had facial swelling as one of my first signs of LE.

Another example: I was diagnosed with sino-bronchitis as a child, then vasomotor (perennial) rhinitis, then a smoker's cough from my parent's second-hand smoke (which caused a bronchitis like problem), and finally, a tenative diagnosis of cold-onset astrhma, despite a normal spiro test. Well, my current theory, based on my present chronic experience with pleural effussions, is that I had pleural effussions back then and that the cigarette smoke and other irritants simply aggravated my fluid-filled lungs.

This seems right to me because i cannot be around cigarette smoke now without going into an asthma-like attack...and my lungs are otherwise healthy besides the pleural effussions. The pleral effussions were not diagnosed when I was a child because the condition was so transient.

The reason why it is important to track down the cause of this stuff is because I spent a lot of money that could have gone into LE treatment on treatments and medications which didn't solve or improve my health conditions (ie asthma medicine had no effect). It's important that the doctors treat the cause of the problem and stop making stabs in the dark like they did with me.

It's also important because if doctors begin to realize odd signs like i just described can indicate LE, maybe kids today might be diagnosed quicker and not have to wait until they are 40 like me to be diagnosed!

that would be my soapbox for today!

Julie E.
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depressed today, is the subject, but today I am okay

Postby Shirley Hogan » Sun Aug 13, 2006 7:23 am

.Thank you Julie for your post. It is so amazing that we all have simptoms that are different in nature, but leave us with the same condition. You sound like you have had such a battle, and the professional field passes it so easily without truly finding the right answers. I feel that when any condition is found early, it saves or at least helps, so that we have some control in our lives with the out come. I have only known about myself for about a month.
The primary doctor recognized it a year and a half ago. But didn't make it know to me, what it could turn out to be. His only diagnosis was that I had edema , and to put on support hose , put my feet up, take temporary antibiotics. It was so lightly delt with, that I thought it must not be very serious. Then a month ago I started getting red streaks and my skin was hot, the toes were turning a brown color, and the skin felt and looked like dried leather. This time I did not go to him, I got on the web and looked up conditions that would cause such symptoms. I then looked for lymphedema clinics in the area, and it just happens that in Tomball here, has a clinic, which is fortunate.
All of your posts help me to grow and learn on how to deal with this new turn of events in my life. I never mean to upset anyone, just so new and uneducated yet, to know what to say or do on posting properly. But I am learning. Alll have a wonderful day now. With sincere regards Shirley
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Postby patoco » Sun Aug 13, 2006 8:38 am

Good Sunday Morning Everyone :wink: :)

Super Kudos to everyone in this thread...really great posts.

Silkie stay on the soap box...what you said needs to be said and heard by all lymphers and the world in general.

It doesn't matter how you have lymphedema, the end result is the same. We need to come together for the sake of the entire lymph world.

Julie, what you discussed really zeros in on some of the latest research going on.

The one big questions researchers have been asking is "Why do some cancer survivors come down with lymphedema while others do not?"

The answer that seems to be coming out is that there is a very real possibility that those who do come down with lymph are already at risk - which means they may ell have a genetic predisposition towards lymphedema.

Now as respects that pleural effusions...new evidence is coming out on that as well. They are finding that the lymphatics play a role in asthma. Seems they have/are finding lymph abnormalities in some asthma sufferers.

If the lymphatics are dilated in the lung cavity, then they are going to have problems throwing off fluids. Comes an irritant, cold, aything and that is simply going to make matters worse.

Julie, I had terrible bronchitis as a child. One of my sisters, who doesn't show lymphedema has always had a problem with asthma.

The mysteries of the lymphatics are slowly but surely becoming unraveled and the more they study thata system, the more they find it is tied in with just about everything.

Good job Ya'll :wink: :wink:

Pat
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