Saturday, September 14, 2013

I'm Fat and You Can't Change That

This blog post is my coming out party.

I am fat. I am a big, fat woman. That's probably the first mental note people have of me. Next my blue hair, tattoos and mobility aid. I know the string of judgments that spark up in their heads. I've heard it all before and I even hear them in my own head sometimes. I choose not to listen or care.  It's easier than you think.  For one thing, I know that I am an amazing human being. That's not conceit. It's not inflated ego. It's a statement of fact. 

I was THE fat girl in every class growing up, and since we moved around a lot I was often the NEW girl, too. I don't think I realized that I was fat and that the rest of the world found that undesirable until first grade. That was when the teasing began. A little boy who I knew liked me would chase me home singing to the Batman theme, ''Dunna dunna dunna dunna FAT GIRL!''. It wasn't long after that I started to realize that it was not cool to be my friend. Why? Because I was fat .  It wasn't enough that people wouldn't talk to me, or would only talk to me when no one else was around. These brats had to taunt me and ridicule me loudly, in front of everyone.
 I was told that ignoring them would make it stop, because they would get bored. That doesn't work, but I don't do well with conflict. So, I just became withdrawn and secretive. It wasn't until high school that I found friends I could trust, but I still withheld emotions that I wish I could've expressed. I just couldn't do it. I was sure that they would betray my trust, and laugh in my face. I still avoid situations that make me feel vulnerable.
My parents tried their best to rid me of my evil fat. We adhered strictly to Fit for Life for a long period of my childhood, and I was made to walk and run track.  I am completely flatfooted. Running caused my feet to hurt like I walking on glass, but as a child I had no concept of chronic pain. I was told, "Everybody's feet hurt."  I realize now that this was an early sign of Ehlers-Danlos Syndrome. Everybody's feet do not hurt like mine.  I was fairly active as a child. I liked to explore the woods, ride my bike, play catch or softball.  I didn't lose weight.
 By the time I started my freshman year, I was in pain most of the time. I would have terrible headaches that lasted for days, and I took so much aspirin as a teenager that I had an ulcerated stomach lining at age 20.  I started going to doctors. I found my thyroid was underproductive and started replacement hormones. If I brought up my chronic pain (I still didn't understand that was what I was experiencing) I was dismissed and told I just needed to lose weight and exercise more.     I tried to explain that I was in INTENSE pain, that it was all the time and all over my body. Eventually, I was sent to an orthopedic doctor. I found out that I had a birth defect in my elbows that makes them permanently dislocated. Yep. I was in my 20's before I found out why I couldn't straighten out my arms like everybody else. I also found out I had early onset osteoarthritis (EDS, again).  Still, it didn't explain the extremity of my pain, fatigue, and malaise, and all these other little crazy symptoms that eventually lead me to a diagnosis of fibromyalgia.
 ~ I should pause to mention here that along the way to adulthood, I found my heroes in strong, intelligent, independent women and the pages of Ms. magazine.  I saw the beautiful, and inspiring Marilyn Wann on a talk show promoting her book, "Fat!So?". This was before we had internet, and she was the first person I had ever heard talk about fat acceptance.  Her confidence and bravery has kept a burner on in the back of my head and heart with a pan of awesomesauce simmering. I realized that there were people out in the world that wouldn't treat me like a piece of shit just because I was a fat. As the internet became more readily accessible to me I began to find these people.  I now have an online support network of wonderful and lovely, creative, fat women that I can run to when I am having issues with the world.  ~
I searched all over the internet to find other people with fibromyalgia.  I found tips for coping with pain and fatigue. I found out that food allergies could exacerbate the symptoms, and I completely cut gluten out of my life.  I did hours and hours and hours of research trying to find something that might help me deal with the pain. This was just before Lyrica became the fibromyalgia go-to drug. (side note: I find the commercials to be infuriatingly dumb, and get fiesty every time one comes on. I tried Lyrica for 3 weeks, and it depressed my entire world.)
We are told that fibromyalgia is not progressive, but I was getting worse. I had new, unique and very extreme pain. My kneecap became unstable from EDS and I was intensely tender in spots not associated with fibromyalgia. One night I found a painful lump in my abdomen, and then I found more and more. I found these painful lumps almost everywhere in my body. My arms and legs are weighed down with them.  Fibromyalgia is not associated with any kind of growths or lumps. I again went to the internet in search of answers.
Eventually, I came upon "Dercum's Disease" (DD) also known as "Adiposis dolorosa" (literally painful fat).  DD is characterized by the growth of painful fatty lipoma-like accumulations.  (For this blog, and in most cases I will refer to the lumps as lipomas. However DD lumps are not always in the form of a lipoma. Some are pillow-like masses of soft tissue, like a painful fat fluffy cloud, and others are smaller and firmer and feel like an almond got stuck in your flesh). DD lipomas hurt on their own which is contrary to what most doctors are taught to believe, and it’s possible that DD lipomas aren’t technically lipomas at all since lipomas are not supposed to cause pain. This is just my hypothesis. The lipomas can also press on nerves, and wrap around muscles and organs.   

DD comes with a laundry list of symptoms and associated conditions, but there are 4 cardinal symptoms for diagnostic criteria. (1) painful fatty masses (2) generalized obesity (3) asthenia, weakness or fatigability (chronic fatigue) and (4) mental disturbance such as unstable emotions, depression, confusion, memory problems and dementia. Thankfully, I don’t yet have dementia, but I do experience confusion and depression at times. My memory is not up to par. I am always fatigued; it is debilitating.  I also have an abnormally low base temp and terrible cold intolerance, both common associated conditions of DD.
There are 3 types of DD, and the kind I have is the general diffuse type.  So, I can get lipomas anywhere that fat can grow. The lipomas can be as small as a grain of rice, or as large as 10 lbs or more. They can wax and wane in real time. My experience is that they seem to grow in cycles. They have steadily grown and accumulated in the past year. DD is supposed to be triggered around age 35, and I found the first lump just before I turned 34.  I have large bags on my arms full of lumps that just hang and drag down my arms. With my elbow defect, and other issues, I have been joking for years that I have T. Rex arms, because they are basically useless. If I fall in a pit, I’m dead. Lately, it hasn’t been amusing how weak I’ve become. Sometimes, I pick an object up and think I should have an easy hold on it, and it slips right out of my hands. The lumps have deformed my legs, and they have taken over my abdomen. Walking (which was difficult for me before) has become increasingly difficult because the EDS and DD have begun to conspire together against me. The right hip and left knee will dislocate as I walk on legs that are swollen with lymph, and have masses pressing on the muscles and nerves.  I sometimes feel like aliens have infiltrated my body to torture me from the inside.         

Doctors have blamed my fat for all my pain and illness.   It IS fat that is causing my pain and illness, so they were almost sort of right for the wrong reasons. Yes, these are fat lumps, but this is a diseased, defected fat. There is no real known cause, or cure or even a real treatment. Current research indicates that DD is caused by faulty lymph system leaking toxins or metabolic waste into the body. The body sends macrophage cells to contain the toxins. Basically, any inflammation or toxins in the body can turn into lipomas for a DD patient. DD fat cannot be lost through diet and exercise. In fact, exercise, can cause lipomas to grow because of the release of lactic acid. Warm water therapy and low-impact exercise is recommended, but it is all according to the patient’s tolerance. I am sometimes in bed for a day or a week because I have chosen to do certain activities (like LIVING LIFE) and my body needs to rest.  
The only way to get rid of a lipoma, is to cut it out. Any type of surgery causes inflammation, and so, when one lipoma is removed, another moves into its place and now this lump brings friends.  Surgery is to be avoided. I know that no one is going to cut on me again. Heh.
As with EDS, Dercum's Disease is an orphan disease. Big Pharma is not interested in supporting research because there are no medications that treat these illnesses. Treatment is palliative and supportive through pain management. However, DD is often resistant to pain medication. Some have found relief through lidocaine injections, or infusions. Lidocaine infusions are somewhat controversial because of the fear of lidocaine toxicity. I haven't talked to my doctor about lidocaine infusions yet, but I know that day will come.  As for now, I have lidocaine patches, and sometimes they help when nothing else does, but you can only wear 3 at once for 12 hours at a time, and then you have to wait another 12 hours to use more.
Compression garments and lymphatic drainage massage have been reported to help some patients. Basically, lymphedema treatments could help, but Medicare requires a definite lymphedema diagnosis for the full treatment. This is one of the biggest problems I am facing in trying to live my life. I have not been able to get an absolutely confirmed diagnosis, and no one seems to be concerned about the fact that painful lumps are covering my entire body. I was told after a biopsy of a lump (that was so abnormal the pathologist took it to a pathologist convention, but "inconclusive") that my symptoms were "compatible with Dercum's Disease" but that they didn't want to "put that label on me" because the tissue sample wasn't "technically a lipoma".

I keep getting asked why getting a diagnosis is so important to me if I know what it is, know that most doctors don't have a clue about it, and it is very difficult to treat. It is important to me because this is MY BODY that is covered in these painful lumps that grow in masses and sometimes layers.  It is important to me because there are treatments that Medicare may pay for that I can't get without certain words and numbers on certain forms. It is important to me because I have battled this weight bias all my life when it comes to getting the treatment I need and being taken seriously. It is important to me because I am being screwed around by bureaucratic paperwork, and lost in the system. It is important to me to raise awareness, so that others fighting this illness alone will be able to connect with folks like them across the world. Likewise, raising awareness could bring funding to the Fat Disorders Research Society which is helping to fund the research of Dr. Karen Herbst, an endocrinologist who is the only specialist on rare adipose disorders in the United States. One day, I hope to be able to get in to see Dr. Herbst, because she may be the only doctor in the States that feels qualified to diagnose me. Dr. Herbst currently works at the University of Arizona, and from what I've heard has a 6 month waiting list for an appointment. 
I loved my body as it was, and I am learning to love my body as it changes. DD is progressive, and I will do what I can to try to slow that progression, but I've already seen the shapes (and I MEAN shapeS) of my body change.  Illness has a major impact on the size and shape of a person. I will not compare my body parts to the body parts of an able-bodied, healthy woman. I will not compare my body parts with anyone. I won't quit asking questions. I won't continue to see a doctor who dismisses me. This body might be defective, but I will take care of it the best I can, because it is the vessel that holds my soul. I am still enjoying the rabble rousing here on Earth.
I am fat. I am a big, fat woman. Accept it.

Thanks for reading! I hope you got something out of my post.  Candice invited me to share the link to my online fundraiser: I am trying to raise the money to get a motorized wheelchair and hearing aids that I cannot afford.  You’ll find some of my EDS story, and more about me personally there.  I can't wait until the day where I have the independence to be able to leave the house on my own and fight for the civil rights of marginalized and disenfranchised people.  If you can give, any amount would be beyond appreciated. I understand these are difficult times for all of us, so I’d be very grateful if you could share this link with your followers and friends. You may think you don’t know anyone who has money to spare, but maybe someone you know does. I need your help to connect to that person. They are holding on, for just the right cause to bless with their funds. That cause could be an adorable fat Texas woman.  Hehe.

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