I'm a Newbie, and Here's My Story

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I'm a Newbie, and Here's My Story

Postby patoco » Sat Jun 10, 2006 8:47 pm

I'm a Newbie, and Here's My Story

Originally posted by Tim 04/07/2005

I joined this group today, and as a means of introduction, I would like to share my story. My therapist told me that I have a unique perspective in my struggle with lymphedema, so my intent in telling my story is to hopefully encourage you to keep up with your treatments, keep up with wearing your stockings, and keep up with your nighttime compression techniques.

My name is Tim, and it is curious to me now how incredibly hard-headed we can be when it comes to our blinded view in thinking, “this cannot happen to me. It can happen to other people, but not to me.” I know all about these folks because I was their king- King Tim, The King of Denial, was my name. When I turned 40, I was diagnosed with lymphedema, but it was not debilitating and I could manage fairly well with no treatment. My doctor at the time prescribed a diuretic for the swelling and this seemed to work. I now know this was the worst thing I could’ve been given, but that’s history now. My attitude was I’ll beat this, no problem. I was very active. I played tennis 3-4 times a week on several tennis leagues, and I cycled 5 miles a day. I figured I’d beat this by sheer will-power and some denial; after all I was King Tim, The Impervious!

Skip ahead 2 years. I’m on a business trip and my leg starts to swell worse than I’ve experienced before. Rather than seek immediate help, I wait 6 days until I get home. This was a BIG mistake. Within 48 hours after getting home, a cut on my leg became infected, and my swollen leg was a perfect environment for the infection to quickly spread throughout my entire leg and into my blood. Until you experience a 104 Fahrenheit fever, I’m not sure any amount of description will relay the panic I felt.

I was rushed to the Hospital’s Emergency Room and immediately admitted into the hospital. By this time, my leg had swollen to twice its normal size and it was red, and very hot to the touch. I’ve experienced a lot in my life, but when the sheet was pulled back to reveal my infected leg, and the attending doctor in the hospital winced at the sight, you realize you’ve just experienced something you pray you’ll never experience again.

I was in the hospital 7 days on a constant supply of antibiotics, and no one was happier than me when they told me I could go home. Afterwards, I immediately sought therapy, and I found a great lymphedema clinic in town. It has now been 4 months since my hospital stay and the beginning of my LE treatments, and wouldn't it be wonderful to conclude with, "and I've made a complete recovery?" In truth, I'm just now coming to terms with what being diagnosed with LE means in terms of altering your life.

My therapist told me that few people she meets, that are recently diagnosed with lymphedema, pay much attention to her when she warns them about the infection danger. But once you’ve experienced an infection, there is an undeniable anxiety that comes into your life. It is like there is a sledge hammer perched over your head- ready to fall at the slightest cut or scrape. However, to this I have 2 replies; the first is you need a faith In God that can dispel this anxiety. And second is you need to keep up with your treatments, keep up with wearing your stockings, and keep up with your nighttime compression techniques. I am no longer King Tim, King of Denial. I am simply Tim, but no one will need to remind me to wear my compression stockings.

-Tim

By God's Grace Alone

...........

Responses

Silkie

Welcome "Simply Tim"

Thank you for sharing you experience
my story is a little different but comes to the same conclusion
If you dont control it with MLD skin care wrapping /and or supports
then it will eventually control you

Sometimes though time with all the effort and disapline in the world
you can get infections from know where
Lymph is like that...... then you have to Take a deep breath remember you want as much control as possible and start the routine
over again.

I had lymph primary for 40 years before someone finally diagnosed
what was classic symptoms
I wasnt in denial but unfortunately it was mis-diagnosed

as you say thats passed now
Today i do what all the lymph family here do
try to look after ly lymph and myself
you have days that would try a saint thats when you come here
the support is amazing
and the feeling of love and friendship of people that understand and care
Pat is a blessing to us all for he is the wise and wonderful
guy that has put this site together and keeps us all going
welsome to this amazing family tim so glad you found us
your letter is uplifting and your determination an example to those o
us having a tough day

thank you

hugssss
silks xxxxxxxxxxxxxxxx

...........

Memphis

Tim, what night time compressions were you told to do? Wher did you learn them? Are they beneficial?

...........

Tim

Memphis,
I am using a Jovi-Pak:
http://www.jovipak.com

I love it because it is comfortable and it does a great job on my swelling over night. My therapist is a real fan of the Jovi-pak too.

-Tim

By God's Grace Alone,
-Tim

...........

Jo Ann

Hi Tim,

Iam Jo ann, I joined the family this month also. Like you, I too was a athletic junkie. water sking, horse back riding, raquetball. All gone now. Ran my won business. Independent as H. Had the life, most people beg everyday not to have, trying to steal a min. in a day for themselves. All gone now. Major depression, untill I finally realized this isn't something you bounce back off of(attitude I had) and have a life like you had. Like you, I rely on my faith, too pull me through. Still dealing with the finacial security, not there anymore. KEEPS ME AWAKE A NITE!! Lymphedema has took just about everything from me, but I am a fighter, its not going to beat me. I will find a way!!!!!!!!!!!! In second time around for LE treatments, responed slower this time, took longer to reduce swelling in my leg, but now ready to order new garments.

Don't make the mistake of thinking, oh the limb feels and looks great I think I'll sleep without the garment tonite. NO!!!!! Big NO-NO

...........

Memphis

Joann-have you ever had a 300 + pound Fat man angry at your door at say 1 am in the morning!!!!!!! Don't make me come over there and have to shake you up girl, keep the attitude, stay on track.....you think your feeling down but its people like you that post and keep on posting and talking are what innspire others!

Note - Thats a 300+ pound unattractive man by the way

...........

Silkie

Hiya Jo Ann
I am a little crazy,
And I am good with my routine
night MLD wrap-- morning cram little massage then supports
but every now and again i break free
i do too much even dancing in a fashion but o over doo it
but i leave legs over night just cream
then the next morning i do the full monty i cream MLD and i wrap
not garments i wrap for 24 hours
It does work for me
Sometimes crazy is good
not for the lymph but for your soul
hugggggggggggggggg
silks xxxxxxxxxxxxxxxxxxxx

...........

robin1956

i am a new member to this group, as a matter of fact this would be my first computer, my story goes like this, i got up on morning in the august of 04 and both my legs were swollen, before i finally got to the therapist, i was wearing a men's houselipper size 11, i normally wear a women's size 7. well they told i had to lose weight i did 68 lbs, it's not enough but i seem to be stuck here. i have never had the infections and hope to be careful never to, i did ok with the dx, but for some reason all of a sudden now, it really gets to me, i want to be like everyone else, hot day on the weekend i want to wear shorts. meeting at work want to wear a dress, but the 30-40 mhg compression chaps just don't cut it. am i doomed to wear pants forever? oh and the hot flashes don't help

...........

Joanne Johnson

Hi Robin,
A warm welcome to you as you join our group! We can all relate to your feelings living with lymphedema. I have had lymph in my lower legs for 20 years. I also went from a normal womens size 7 to mens size 11 slippers. It is up to you to decide how to choose to dress. Your family and friends know your problem and will be supportive. Try not to worry about how anyone else feels about you. You are the only one that matters.

Lymphedema does change your life to a degree. Despite lymph I enjoy a full and happy, fulfilling life. Try not to get discouraged. Make the adjustments that you need to make but be happy. You can do it!

Joanne Johnson

...........

robin1956

i just wish my husband understood lymphedema. he just doesn't want to know anything about it. i have been fitted for the hose but i am short and even the short ones are too long so they are never really comfortable, like you say i have my good days and bad days. i am very lucky to have a sit down job, cause even with the stockings, if i do alot of standing the knees just blow up. it would be nice if they could tell me what caused this oh i have read up on the subject, but all the can seem to say is it's my primary dx, i really don't think my doctor knows much more than i do, but my therapist was truly great. i hope to learn alot from everyone on this and dealing with it, have a great day

...........

Joanne Johnson

Hi Robin
I certainly hear you about your husband's lack of interest. My husband has never been interested either. Some people are afraid to get involved. It would be nice, but we can do okay without their help.
There is so much info on this site and you will learn so much yourself. Plus, you have all these incredible people just waiting to jump in to help, Maybe your therapist can recommend a doctor who specializes in lymphedema or at least has adequate knowledge. It can be difficult dealing with the doctors. Don't give up your search until you are satisfied with your doctor.Good luck!

...........

Gary1955

Hello... My name is Gary and I have had lymphedema in my lower limbs since 1996. I attended a lymphedema clinic in my area twice and have had success both times in getting the swelling down significantly. My problem is due to another major health problem I have been fighting all my life. I suffer from morbid obesity which has caused a major roadblock in my lymphedema therapy. Because I can not wrap my own legs due to my size, I have been unable to perform the daily therapy, wrapping, and pumping. I have a difficult time getting in to my sleeves for pumping and also my compression garments once therapy at the clinic has been completed. I have no one to asist me and so far I haven't been able to figure out what to do about this problem. I suffer from hypertension, depression, sleep apnea, asthma,and high cholesterol. I am on several meds to treat these conditions. I have had reoccuring bouts with celluitis as well as a large skin tag on my right leg. Since 1998, I have been on disability with medicare as my primary insurance. Recently, I met a woman who has the same health problems as myself as well as lower limb lymphedema. She found a bariatric program at a nursing facilty which also assists her daily with wrapping and pumping. I took a tour of this facility in April 2005. She has lost over 300 pounds without bypass surgery. She has had several surgeries to remove areas of lymph fluid buildup also. I am hoping to qualify for medicaid in my state along with my medicare so I can participate in this bariatric/lymphedema program as a resident. It is the first glimmer of hope I have had in 9 years. I know if I can eliminate the weight problem it will take care of most of my other health problems. I am at the point where I can not walk or stand for more than a minute or two. Before 1996, I use to hike in the mountains as my favorite past time. I sure would like to see those days again. Thanks for letting me tell my story.

...........

Pat

Hi Gary

Super welcome to our family here...very glad you joined us.

Keep us updated on how you do at the nariatric/lymphedema facility, very interested in how you do.

I have known a number of people that have had the by-pass surgery, but if this one woman you mentioned lost 300lbs. without having it, that would be a tremendous encouragment to others. It's a major operation and it would be great to have an alternative available.

The one thing I would mention though, is to treat the lymphedema with manual decongestive therapy and compression wrapping/stockings. Please, whatever you do, don't allow them to do a surgery to remove the fluid.

These surgeries are massive operations as well and have fallen into disuse. They present with their own complications, both short and long term and even with the surgeries, the swelling returns.

I was one of the pioneers in this as I had several procedures called the Thompson's back in the early 1970's...and from my experience I would say never never have them done.

Hang in there, my friend, sounds like your on the right track!!

Getting treatment for both conditions...means, I can se you back in those mountains again!!!!! Know exactly how you feel about that as I used to do that as well. LOL - from the Rockies, to the Appalachians, to the Alps, great memories of my adventures.

Again, welcome and very much appreciate yourpost!

Pat

...........

Silkie

Hello Gary
Welcome thank you for telling us about how lymph affects your life

I would like to tell you about a young woman names Paula

misdiagnosed long time Finally through her own determination she got her insurance to pay for her to go to a clinic for 3 weeks
this intence wrapping 22 hours a day diet and some physio
the first 3 days she had lost 123 pounds
Lymnph fluid.
This month she speaks at a vodder confrence to therapist about the experience and her ongoing battle with weight and with lymph
she is doing so well and will tell you it is so hard to maintain
but she likes beining able to walk round the mall
with her husband i have so much admiration and respect for paula
It is possible to achieve with the right help
I hope you have the same help and achieve like paula has done

Good luck please keep in touch and let us know how you go on

hugss silkie xxxxxxxxxxxxx
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