Saturday, October 26, 2013

The Swelling

The doctors are paying more attention to all my swelling. I showed them the picture up top. My feet do not swell as much as the legs. I am diagnosed with lymphedema but am exploring many things right now. The swelling is getting insane. It's gotten far worse. 

For 15 years, they told me I had congestive heart failure from all the weight and that was the reason for the incredible amount of swelling in my body. The water on my body is getting very serious, it is causing me very bad pain, in both legs, my stomach and many other areas. The nurse practitioner said to me, your congestive heart failure has improved by all the blood tests, I said, for me to have this much water on my body, shouldn't I be gasping for air? How could my congestive heart failure still be in mild land, while I am swelling so extremely.

She said something is not adding up and something is seriously wrong. One latest nurse practitioner even said, the swelling on your body is so extreme, they wonder if there are hormonal reasons. The endocrinologist I saw was in shock from it all. He even asked me if I had surgery on my lymph nodes and I said no.

I still await results on my latest Cushings test. I turned my urine in last week. The other day, I told the medical professionals, the more I do, the more I swell up and it's taking over my life.

I am getting physical therapy, and an occupational therapist doing lymph massage and some wraps and a nurse. I am exhausted but trying to stay alive. This is the worse of all my disabilities, that forces me into bed for hours. Get active, I swell up, and yes I can literally see my stomach and leg grow and I am not kidding! I've been diagnosed with lyphedema for years and plan to see a specialist, insurance mandates I finish some present nursing care, physical therapy and lymph work now, but I need to see a doctor that specializes in all this. I need more answers. I blamed all this garbage on congestive heart failure for years and years. You're fat so you're heart has failed. What if swelling up like this made me FAT to begin wtih?

One thing they have pointed out is my right leg is swollen too but they see how thin it is underneath, why would an otherwise very fat person have a leg that looks that "normal" under all the water?

My lymph therapist also has discovered all my lymph nodes are swollen and that includes on my arms to some extent too. I feel swelling in my hands all the time. She has told me I have mild lymphedema in at least one arm. The stomach swells up constantly as well especially the lower half. They know I can gain 30lbs within 2 weeks, this alarmed the doctors as well.

I have been investigating different lymph disorders. I am wondering about lipedema since I am so huge on the bottom and my feet do not swell as much as the rest of me. I have the far thinner waist and larger bottom show on the picture at the link. I am far smaller on top. Sometimes I wish I could have afforded the Mayo clinic years ago. I'm doing leg wraps and what I can. At least they are all taking me serious now about how serious the swelling is affecting my life and hurting me. This stuff is very painful! Right now as I sit here, my stomach has swelled on top of my legs and my legs hurt like crazy.

I told them in pictures, my face changes depending on the day and how swollen up I am. After this long I just want answers and am tired of suffering.

Update on this article: 11/22/2013 I got some help and leg wrappings and treatment are shrinking my leg down, there is still more to deal with but some kind medical professionals have helped me. They are realizing I am swollen with fluids body wide, and I have sought help via various online support groups for more answers too. I feel far more hopeful about my left leg which I am wrapping 4 times a day.

Update 2014: I was diagnosed officially with Lipedema stage IV. I have it very severely. I have fibrosis on my abdomen down..... 


  1. Hello,
    I'm a journalist and hoping to ask you a question, but I can't find a way to contact you? Do you have an email address? Many thanks, Jennifer Wiley, Barcroft Media

  2. Can you email me at I do live in America so may be far flung from where you are at.

  3. Sorry you're suffering so much. Hope you can find something that helps. - chakradancer

  4. I really hope they can find out what's going on so you aren't in anymore pain.

  5. Thanks me too. I am getting more care now which is a good thing, and the leg is responding to being wrapping and lymph therapy. Still have lots of fluid on stomach etc.