A warm “Wai” from Thailand and thank you for letting me write here!
Briefly to me: Jürgen (54) from Hessen, happily married, two grown girls, works for the regional council of Giessen, Department VII Refugee Affairs. Primary lymphedema of both legs.
The latter is a bit bumpy in the vita, because who admits in their seemingly perfect vita that they are chronically ill. The picture will look different again soon.
I have just come back from the great colorful breakfast buffet on vacation and now is the time to write to you:
The girls sit in their airy dresses at 30 degrees Celsius and high humidity at the breakfast table and the men with T-shirts, shorts and slippers stand at the bistro counter and wait for the omelette. I, on the other hand, feel like I'm spotlight number one here right away. Long summer jeans, canvas shoes, T-shirt.
"Is it still possible to wear thicker clothes?"
Hardly anyone notices that I'm hiding something. My fat legs. It's still possible in the morning, but nothing works without class III compression stockings. The legs would run full while going to the restaurant and during breakfast. I would have something like this for three days until it was "normal" again.
“Why is he going to such a country? Could he go on vacation to the north? ”Some of you are probably asking yourself. Rightly.
However, I try to do everything in my life that I want and that gives me joy. "K (l) a compromise". From a medical point of view, I can already hear the doctors saying, "With such an illness, the heat is poison" - yes, you are right. But ... what is not poison?
When swimming there is a risk of getting a fungus, sunbathing while sunbathing and the long flight could trigger a thrombosis, etc. Everything negative also has something positive: Swimming is best for my legs, sun in moderation gives my body that Feeling regenerated, for the flight I allowed myself a syringe of blood thinner and compression stockings anyway, they are my daily companion until I go to bed.
When I see my clinical picture, I often fall into a hole, but when I think of other fates, I feel like it Note two minus. Maybe also a topic why I volunteer in emergency pastoral care (I would never say that in a round of introductions in such a group). Who is going to put his illness on the table?
Until then, the world was fine - my first erysipelas
It all started when I was 12 years old. I've always been a stocky blond boy. Shorts and always dirty t-shirts were my trademark. And swimming - swimming trunks on and I was happy.
During the long vacation at my grandmother's farm, I fell ill one day. I felt weird, chills and then a temperature of 40 degrees set in, I had to lie down. What I hadn't noticed then, but my grandmother: the legs were fire red and hot. They were full of water.
She became afraid and afraid. 42 years ago there was no medical emergency service so the doctor was called (on the small settlement with seven farms, my grandma was one of the first to have a phone).
The doctor didn't really know what to do either. In any case, leg wraps again and again - the redness and warmth on the legs had to be fought. He prescribed something that made me vomit. After three days it slowly got better. I think afterwards that it will be with my first Erysipelas was really critical of my life. Thank you grandma for sitting by my bed day and night.
Lymphedema? This was not discussed in the family
Of course, my parents came from 200 km away and picked me up. My father must not have looked bad. I would like to know today what he was thinking back then. Because he was also a lymph patient. Both legs also affected. Then this hereditary disease disappears in his family tree. He himself wore compression stockings up to his knees and occasionally had erysipelas. However, this was not discussed in the family. His chronic illness only came on the table with my illness. I had fat legs since that day. Always swollen and I hated them. I didn't want to be satisfied with that.
The doctors puzzled. Does the boy have heart disease? I then came to the William Harvey Clinic for Vascular Diseases in Bad Nauheim. There they drove the water out of my legs with painkillers and a garden hose, tightly wrapped from my toes.
What nobody knew at the time: they broke the last still functional lymph capillaries.
My first stocking
From there it was said "Rubber stockings" carry it up to the knee. From now on, the gauntlet began at school. Should I be the mockery of the whole school while exercising with my legs in the locker room? When I went swimming, my stomach turned. In the collective locker room, all the boys took off their clothes - swimsuit and went into the water. I pushed around and looked for a corner in the hallway to hide my stockings. But the fat legs?
Most of the time I ran quickly into the water, made a run-up, didn't cool off and was in the water - done. Somehow I snuck past the shared showers, at least quickly put on my stockings and pants and then it was done. Then I could be in the locker room with the rest of the boys. Most of them teased me because they said I was ashamed of myself naked and then came the usual sayings about a penis that was too small and such. The real thing remained hidden. So my doctor released me from physical education and swimming lessons. It was good and bad for the soul. It made me an outsider again.
"He's not doing any sport - we'll see what he gets out of it ..."
I just couldn't make friends with those shitty legs. I talked to my father and then realized it was inherited. Not revisable. My father said “Boy, there's little you can do about it. Accept it". I hated him because of that curse that was on me. If only he would never have given birth to me. To be such a cripple at 13 ...
Shock and anger
As with the phases the mourners have to go through, I experienced shock and anger. But this anger was special. I had at least one person I could blame for it: Father. Later, because of my religious orientation, “God” was added. "Why are you doing this to me ?", then was the shift - away from my father. At some point I realized that it wasn't directly to blame; but still indirectly. How can you be affected by such a disease and bring children into the world who then have to hide their fat legs all their lives. Every now and then I drew parallels to the pigs' feet. At the latest after the toes were affected. I never decided to have children - never!
Buying shoes became a problem. Extra wide shoes were seldom found and cost a lot of money. Everything that was modern was unfortunately not suitable for me. In addition, the shoe sellers were pushy back then. "Oh my God! What fat legs do you have ”, I came up with that every now and then "Elephant Man" in the black and white film. So I shooed them away.
The same goes for buying trousers. Skinny jeans and that sort of thing no longer worked. You had to search a lot before you found something. Because of the lack of self-love, the rest of the character didn't care. Whether you're thin or fat ... who cares?
I annoyed all the doctors and surgeons about what they could do. Plant tubes in the legs so that the water can drain off better. Or take water tablets?
"Maybe you will also amputate my legs from the knee, then I'll get rid of them!"
The Feldberg Clinic
When I was 16, my family doctor reported about a special clinic in the Black Forest. I had just started an apprenticeship and had almost started to make friends with my legs because the need for perfect legs was burning. Should there still be a change? At that time we were already fighting with the health insurance companies to cover the costs, but since I constantly had erysipelas (i.e. the relapses when the disease broke out) it was not an issue. Sometimes I even came to the hospital and the doctor kept warning me “Every erysipelas eats the heart muscles and will give you a shorter life”.
The substance of the advice is still questionable today. The fact is of course that this inflammation is not beneficial to health. Sometimes it was so bad with the erysipelas that I was injected with penicillin as a depot syringe into the buttocks muscles.
The first one night stands repeatedly produced the stress level from the previous physical education classes at the school. Hiding, lighting out and concealing became the strategy. Youth activities in the summer by the lake or holidays with the boys, camping or boating - mostly without me. At some point I didn't want to give myself up to this stress anymore. And yet I broke out here and there and dared - but never to show my colors: "I am chronically ill" - never. That continues to this day.
The Feldberg Clinic for lymphology in the Black Forest became a long-term residence point for me after the approval of the health insurance. The training had to pause and I fully concentrated on my health. Back then I had the illusion that I was actually experiencing a miracle and getting completely new legs. I was happy to invest a nine-month stay for that. At that time still in a two-bed room - with a roommate, who apparently liked pubescent boys. I do not write more here.
The encounters with many lymphatic patients gave me a lot during that time. I learned the difference between a primary lymphedema and one
Secondary lymphedema - i.e. the edema that breaks out after an operation - for example in female cancer patients after a breast ambutation. In these patients, the arm was mostly thick due to the removal of the lymph nodes.
Each form of the disease is different
It was during this time that I got to know Emmi. She was probably the first lipedema patient I met in the rehab program. She was so wonderfully cheerful and always had only one Kaftan at. Emmi was convinced that her edema made her thicker and thicker and that one day she would burst. Still, it was a great and valuable encounter with her. I learned that each form of the disease is individual and not comparable. Everyone has to carry their own package. Arrange or not. Let yourself hang or do something with your fate. During the nine months, lymphatic drainage was the order of the day, wraps were worn until late in the evening, diet and disease clarification, do's and don'ts.
The thing with the offspring
Today I look gratefully at my family that I am allowed to have. Although I never wanted to get married or have children, everything turned out differently. I have a great woman by my side who is still wrapping my calves for an erysipelas and two wonderful girls aged 20 and 21. I'll tell you one more thing quickly: In fact, my wife convinced me for an initial interview at the University Clinic in Giessen - Human Genetics Department, in order to discuss possible plans for children with them.
“It is 50:50 that you are going to father a child with lymphedema. Everyone brings in their genetic factors and the mood of nature does it ”.
I was unsure about bringing children into the world with this statement. I imagined in my head how my future daughter might come to me with fat legs and say to me: Daddy, I hate you for that! 50:50 was not enough for me. Nevertheless, I saw in my wife that she was an example of what a mother must become. In my head I was riding a roller coaster. Should I offer her another man? Or openly inquire about a sperm donor in a clinic? Then how will I be to the child? A better idea: let's adopt a child, but then also visibly with one Third world child.
The doctors had a tip for us in the next meeting: “We consulted and looked at how other lymphatic patients passed this disease on or not from the genetic sequence. You can clearly see that it is passed on among men. Therefore it would be good to break this order of inheritance, e.g. B. with a female successor. What is interesting about me is that my older brother did not inherit this disease, but my younger brother did.
I could come to terms with that and wonder how it can be controlled. There were sayings like this: At night with a full moon on the north wall. The doctors smiled at my comment. So they explained to us the matter of the "tadpoles", who is slow or fast at fertilization. What is likely to lead to a girl or a boy.
And then we literally have it "Dear God" left. They turned out to be two girls and so far they haven't had it, which, according to the pros, shouldn't mean anything. It could break out in women, especially during pregnancy. I continue to trust in the good, pray and hope that this genetic defect is eradicated.
Thank you very much for letting me write. Greetings from me. Even after 41 years I don't wear shorts in summer, I'm still not open to this shitty illness and improvise every day. Nevertheless, I try to give my life meaning and take most of the joy of life with me. Even if it is sometimes not the best for your health - but for the soul!
Flat-knitted made-to-measure brand Mediven 550 - class III, with Y-stop, closed toe (so that you don't need socks on top) and adhesive tape (so that it slips less).
Available in addition to the classic colors black and blue in gray, brown, green, light blue, blackberry and patterns in addition to plain, diamond, herringbone, lines, etc.
72% polyamide and 28% elastane.
The advantage over other brands is the thin type of stocking, which is no longer noticeable with shoe size 46,5. Disadvantage: no natural fiber, which is associated with sweating. Interval: at most 2 days, then the stocking has to be in the washing machine.
Dear Jürgen, thank you for the courage to share your story with us! Much love and strength continue. You're wonderful.
I want to thank you for your article! I wish you from the bottom of my heart that at some point you will step over it and wear compression and shorts in the sun; maybe at least knee-length trousers ... Don't think about what others might think, but think that you too have the right to sweat less. The people to whom you are important will still like you even with visible compression. I also think it's great that you don't miss the opportunity to travel to hot countries. All the best to you and your family!
Hello Jürgen hello, my name is Andreas and I have had secondary lymphedema since 1994 after cancer surgery and radiotherapy. Wear two KKL 3 stockings on the left with a waist belt! And most importantly, I always wear Bermuda jeans and trousers in the summer, because I don't care more than that .. Just courage, the surroundings get used to it. VG Andreas
I just came across your area of life while browsing. I am lucky that this only broke out at the beginning of the year. I am now 49. I have had the correct diagnosis since September. The thing that annoys me the most is buying shoes. And probably try a typical man to combat this with Sport Trampoline Sauna Therme Massage ...
yes ... that's how it is. It also caught me and my siblings. Well, not to change, we suffer. Yet it is what it is.
So a pragmatic question from me: Where do you buy your pants? I still have level 3
am 178cm tall and only have jogging pants in the closet.
About an answer I would be very happy.
PS: I lived in South America for 16 years (not good for this disease).