Thoughts on lipedema - story of my life

I open my eyes, slightly dazed by the wonderful dream I am an elf. I hop weightlessly through the area. My body parts were filigree - pink the whole dream world. But back to reality. Sometimes my tired legs hurt in the early morning, shortly after getting up. Of course I force my compression stockings, my fingers and my back hurt as well, but it doesn't work without them. It's like my own little prison that there is no escape from. Or is it? I'm mad at the health insurers for not giving me the option to consider liposuction. Angry that you leave me alone with all of my worries and problems. What are you doing? I have to fight for my compression and my lymph drainage myself, justify myself umpteen times ... maybe it's better if I just surrender.

My girlfriend always wears such beautiful things - pants fit her. Skinny jeans look great on their slim legs. She wears boots, she goes to the swimming pool. I love you so much, but I'm so jealous of you that I don't recognize myself. I am sorry myself that I am like this, but I wish nothing more than that normal to be. For me it starts with the socks. These cut in, are too tight ... only extremely wide shoes and wide trousers work. I feel very limited. I just can't develop how I want to. I am constantly reminded that I have lipedema.

Lipedema pain

It stings, sometimes it burns like fire, it feels strange. I'm afraid. Sometimes it's so bad that I just can't anymore. I'm pushing appointments - and now I'm not meeting my friends for a barbecue. Actually, however, because of the pain I just can't anymore. The whole thing drives me crazy. Put your feet up, swallow pills for the pain. Great life. It frustrates me deeply.

In addition, there is my fear that at some point I might no longer be able to work. My legs have long since stopped allowing me to stand or sit. Kneeling is another thing; the compression cuts into the hollow of my knee. The third time I don't want to take you to the medical supply store for a change, I can't cope without it. I only have two pieces that I wear every day, some of them have holes and are torn. But my doctor says you're still walking. He's the doctor!

Fears about the future - not just professionally. How should it go on privately? My last friend left me because of my sensitivities. He didn't get along with lipedema any more than I do. I just can't run away like him. Will I find a man who will take me for who I am? Who understands that this disease destroys my self-confidence? That I am ashamed I know that I shouldn't, that this is how my body is. Love yourself. Bla bla bla ... if it were that easy !? Then I keep reading that pregnancy makes everything worse. What does that mean for me? Should I have children now? I'm not sure if I want to pass my genes on at all. But what do I worry about that. I miss the man anyway.

I expect more

Nobody can feel what is going on in me. But hey, dear health insurers, dear doctors, I want to say something too. I only have this one life, I'll try to make the best of it. Even if the road is rockier and harder for me. Maybe one can expect a little support from you at some point!

 

This is a summary of many of the thoughts and feelings that I see in various forums every day.

My dear fellow sufferers, it hurts my soul when I see your status reports. When I read what concerns you and notice how much it is also a burden. I want to let you know, you are NOT alone with this. We'll all get through this and we'll fight to live our lives the best we can. With everything that goes with it! We will fight, live and laugh! Please never give up hope! Life still has so much in store for us.

 

Handwriting Anja

lipoedem fashion anja portrait pregnancy lipoedem

Author: annichen1989

I'm Anja and I was born on February 10.02.1989th, 2 in Schwedt an der Oder. So I come from beautiful Brandenburg. Professionally, I work as an office communication clerk, I support XNUMX companies with my workforce. I also work as an artist in the field of manga. Dear Caroline invited me to participate in this blog. I enjoy sharing my thoughts and I hope that this will also make our disease better known.

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  • Thanks for your honest words. Thank you for having the nerve to say what is going through your head and for speaking PERFECTLY from my soul! But above all: thank you for encouraging us not to give up and for somehow managing it all together. That is encouraging 🙂 especially today, when the arms and legs were particularly painful again and everything was too much ...

    • Hello Anika,

      Thank you for your kind words. I didn't think this article would appeal to so many.
      Hope you feel a little better soon - unfortunately I also know days like this.

      Best regards
      Anja

  • Thank you for sharing your thoughts, fears and wishes with us:) I found myself again in every sentence.

    Greetings, Hatice

    • Hello Hatice,
      Thanks for your feedback - I'm very happy that I seem to have hit the nail on the head.

      Wish you all the best!
      Anja

  • Hi Anja,
    I came across your blog and think it's great, very nicely written 🙂
    I've actually had problems with my legs for a long time.
    When I was around 15/16, I took a bus to Spain with my parents for 16 hours. My legs also hurt like hell and were so swollen that I couldn't really get into my ballerinas anymore The seam on the back of both shoes burst ... For years I didn't think about it. Last year I went to the doctor for the first time. I have varicose veins and spider veins. That's for sure.
    I also went to a vein doctor who said I had nothing. He almost laughed at me. Asshole. He only found water on the back of his foot. I have been putting on compression stockings for a year ... I also get lymphatic drainage ...
    Somehow nobody knows what I have. Now it's probably called lymphedema or lipedema. I always get confused because it sounds so similar. My feeling tells me that it is one or the other ... because I have also noticed since the beginning of the year that my right leg is a little thicker than the other.
    Do you have any tips for me? what kind of doctor should i go to? I always feel so misunderstood by the doctors: ///
    And are dehydrating foods useful?
    Thank you for reading and greetings
    Katja 🙂

    • Hello Katja,

      Thank you for your comment and for your sincere words.

      Your problem sounds a lot like lymphedema to me. Your legs store lymph fluid and this causes your pain and your legs are of different thicknesses (remote diagnosis is not possible, judging from your description it sounds very much). With lymph drainage and compression you are already very well taken care of. I can definitely recommend you to go to a pheeologist. This specializes in veins etc - you would be in good hands there.

      Please never take water tablets if you have lip or lymphedema. Unfortunately, this is counterproductive - it is best to talk to the doctor about what else you can do.

      I hope I could help you a little further and wish you all the best.

      Best regards
      Anja and the whole team from the blog!

  • Dear Anja, I can understand your thoughts 100%. My legs (stage II) and arms are affected. Some days I don't even want to get up for fear of being in pain again. I had to give up and limit a lot. I know the "problem" with men very well. Sad. Some of my hands look pretty battered, I can't wear long nails anymore because they break off all the time by pulling up and putting on my tights. Now in winter it is particularly disgusting because I also suffer from frostbite on my fingers (which makes rubbing my knuckles worse).

    But all the whining is of no use. I have full compression garments, machine with cuffs and MLD. Still, it's just a drop in the ocean. When I think about the fact that I might have to spend the rest of my life like this, I get more than sad and angry! I get advice from various doctors in January. Liposuction. * thumbs down *

    I wish you all the best, hope, strength and the best from Cologne,

    Luisa

  • Wow!!! Just heartfelt❤ I know it as a man, but I have a vein problem. A man in pantyhose, always compressing his legs ... he must be gay or abnormal. When it comes to finding the right woman, it's also very difficult. But hey ... I know my real one is out there looking at my soul and not my body. The body is perishable, the soul is eternal! I wish everyone a lot of strength and being different is really being ... different is cool !!!! Lg alex

  • Oh all you strong admirable women with lipedema. There is a life with it. Do not give up. I am 64 years old. Have always had this condition and it wasn't confirmed until 2006. This stage three. I have two daughters 5 grandchildren and two failed marriages.
    When I read your comments I recognize myself in everyone. And still: don't give up, live your life full and round and be happy. We only have one thing
    Very moving greetings

  • I would like to comment but it is rejected. Double post. But I've never written anything here.
    Do not give up. I'm 64 and stage three. Every comment moves me and reminds me of myself.