Speaking My Mind

This has taken me a while to write. This did not happen to me, but it did happen to a friend of mine. My friend called up so upset because this happened to her. She went with her husband out to eat. While eating this family came in and the kids were brats. They were causing problems, running around, and yelling. My friend and her husband finished their meal. They were waiting on a cab.

(Now here is where I need to give you some background information. My friend has Lipedema in her arms. In the arms Lipedema is rare but she has it. It affects her arms like it affects my legs)

My friend and her husband were waiting for their cab. He was outside while she waited in the AC. One of the kids came up to my friends and asked, “Hey Why are your arms so big?” This caught my friend off her guard, but her response was great “Why are you the way you are?” The kid’s parents looked at my friend like she was terrible for asking/ responding that way. Then the kid reached for my friend’s arms and almost touched her arms “Can I touch it?” My friend replied in a firm voice “Don’t touch me!” The kid’s parents Huffed and gave her the stare of how dare you. My friend was upset. The kid just stood there staring and pointing at my friend. Several people were now looking at my friend. She walked outside to wait in the heat for the cab with her husband. She was so embarrassed. Plus, due to so many people staring at her she was also dealing with her anxiety too.

I am sharing this story because things like this have happened to me before. I understand the embarrassment she felt. As you all know I carry my 80% of my weight in my legs. It is Lipedema. I am a 3x on top and 6x/7x on the bottom because of Lipedema. I do not look like what the war says is normal. I am extremely big from my hips down. So I get lots of looks, rude and mean comments. I get it a lot. When I stand up for myself I get comments like “Well your fat and did it to yourself.” “Well all we’re doing is speaking the truth your huge!” I’ve been called a beach whale. Once I was walking and had on a tie-dye tunic. A car vehicle drove past me and then backed up rolling down their window. I think they’re asking for directions. I go to the window and the person says “Do you know you look like a tie-dye beach whale walking.” Everyone in the vehicle laughed. It cut me to the core.

There have been times when I was in public with people all around and someone has made remarks loud enough for everyone to hear. No one else said anything but they laughed at it. I have gone to job interviews and the interviewer has made side remarks about my weight. Or they’ll make comments like “Umm I am not sure you can keep up” as they look me up one side and down the other. It is like people know making fun of people who are fat is accepted. People know they will get support.

Oh and after I have been made fun of in front of people I have had people come up to me and say “Well maybe getting told the truth will motivate you to lose weight. Sometimes people just need the truth pointed out them.” Really? You’re saying it is okay to say rude things at me, be disrespectful to me, and make fun of me. It is okay for people to discriminate against me just because I’m fat!

Well it is Not! None of this kind of behavior is ok. It is not alright to treat me or anyone else like this. I am a human being. I am a member of the human race. Hello! I should be treated with respect and kindness. (That’s how I treat people.) Despite what it the consensus is I did not do this to myself. I do not sit around all day eating. I do not eat entire pizza, or an entire bag of potato chips in one setting. I do not eat donuts, candy and cup cakes all day. I do not have 1,000 calories per meal. I do not just sit around and watch TV all day. I enjoy walking. I enjoy doing Richard Simmons workouts and Sit and Be Fit workouts. I enjoy traveling. I enjoy walking to meet my friends downtown for picnics or just hanging out. I like to participate in life. Yes I know this surprises a lot of people. Some of you might be reading this going “What! No way a person of that huge size can do all of that.” (I said some of you)

Here are a few things you should know about me:

1-My appearance and weight gain is not my fault. I have Stage 4 Lipedema- Secondary Lymphedema both diseases lead to obesity. (Look it UP!) I did not know I had Lipedema until I was at stage 4. I found out eleven months ago. I have had it since I was 14/15 years old. Doctors just would say- “lose weight” “get active” “stop eating junk” (No wonder people treat us like we deserve to be treated with disrespect- the doctors do too!)

2-I have always tried to lose weight. I have been successful and then it would just stop. I could never really lose weight in my legs. In fact, no matter what I did, my legs kept getting bigger. Doctors just didn’t care. They saw me and FAT end of story.

3-There is a Public Relation campaign called “The War on Obesity.” WAR! Really you are going to war against me? You are going to war against human beings like myself.  War? When you say War doesn’t it mean a fight, a battle, a physical assault, trying to defeat one group of people so another one can rule? I did a quick research of the meaning of war and got this- War is a state of armed conflict between states, societies and informal groups, such as insurgents and militias. It is generally characterized by extreme aggression, destruction, and mortality, using regular or irregular military forces.

Is this what we’re doing here with the “War on obesity”?

No wonder people feel that they have the right to be rude, mean, and disrespectful to people like myself, my friend, and lots of people like myself, they are at war with us. They think we are the enemy. I am here to tell you, We Are Not the Enemy. We are human beings.

I have no idea where this will go from here. I didn’t intend to write in this tone when I started but maybe it is for the best. I had to get this out. Now that it is maybe we can talk about this honestly.

Thank You for reading this.

 

 

Lipedema

Hi,

I hope you all even remember who I am. Yes, I know it has been a long time since I have posted. An extremely long time. The good news is that while I have not been posting my blogs I have had lots of things happening in my life. In case you haven’t read any of my blogs read below to see where I began. http://mmbreakingfree.blogspot.com/2013/09/my-story-so-far.html
As you all already know I had lost weight and had lots of success learning how to handle my anxiety and panic attacks. Then I lost a dear friend. I was caring for her daughter and almost got custody of her daughter but then had her taken away too. (I still don’t know if she is even alive. That weighs heavy on my heart.) This really set me back. I became really depressed. I dealt with it by eating. I got myself back on track. But I discovered something- I was losing weight and inches up top but not below the waist. Everything below my waist was just saying the same. My hips and thighs were not getting any smaller. I was walking, doing water aerobics, and exercise DVD’s and yet my lower portion of my body did not change.  FRUSTRATING!
I started doing research on the matter. I even went to doctors and asked questions. I would get answers like you need to diet and exercise. You need to get off your butt and do something. (You have no idea how hard it was not to tell them off.) One night I was flipping channels and saw a show on TLC called “My Legs Won’t Stop Growing”. I recorded it. I had a friend come over and watch this with me the next day. I was shocked because the first story they shared was a lady that was a lot like me. My friend said the same thing. The first story was talking about Lipedema. So, my friend and I researched Lipedema. We read the symptoms and it was describing me perfectly. We kept researching. Then I read No amount of diet and exercise would help get rid of the excess fat in the areas effected by Lipedema. I was stunned! I was pissed. I had no words. The next morning, I spent hours online researching Lipedema praying that it wasn’t true. That there was a way to lose the heavy weight on my thighs. All the research said that no amount of exercise or diet would cause the Lipedema fat to go away.

What I did next was not smart and I am ashamed to admit it. I stopped dieting and exercises. (Yep stupid) I just stopped, diet wise. I did find a new doctor that listened to me. I shared my research. She agreed that could be what I had. She didn’t know about so together we went about finding a Lipedema doctor. This took a while. (At this point it is April of 2017.) I kept researching Lipedema. I tried to force myself to diet but I was so depressed. I couldn’t get it together. My right knee needs replaced but can’t be until I lose 200 to 250 pounds. During this time, my walking and exercise became less and less.
This continued until August of 2017. I got in to see a Lipedema doctor. She confirmed I have Lipedema Stage Four. In fact, she gave me a complete diagnosis. I felt over whelmed. Here’s the complete diagnosis-
*Ehlers Danlos Syndrome Type 3

*Lipedema Stage 4

Secondary caused by Lipedema
           *Lymphedema
           *Obesity

* Dercum's Disease

Then add that to the high blood pressure, serve arthritis, a right knee that need to be replaced, tension headaches, migraines that present with stroke like symptoms, anxiety, panic attacks and depression it was over whelming. I woke up that night scared just thinking about everything. I woke up having a panic attack. Honestly, I felt confused and scared. The first few weeks I was walking around in a daze. I shared the news with my friends and family. I shared what I had and information about Lipedema. Yet, I still got comments like lose some weight it will help. Oh and this one really got me. God wants you to be healthy and thin. I got a lot of comments like this. But I kept sharing about my condition. Thankfully I met some Lipedema ladies through a support group.
Then the anger started kicking in. I was angry because I had Stage Four Lipedema. Stage Four. Why hadn’t any doctor ever told me about this before. Stage four. I have been complaining to doctors for years about pain in my legs. Stage Four. I have complained about not being able to lose weight in my legs. Stage Four. Stage Four! I have learned that if it was stage 1 or 2 and I could have hope of having things done and possible reverse the effects. Stage 1 or 2 have research being done. I kept thinking about all the doctors who have told me that I was lazy. I kept thinking of doctors who have told me I was just fat. I kept thinking of all the doctors who told me that losing weight would fix everything wrong with my health. I was angry. Due to never being listen to by doctors I now was in Stage Four. (That is the highest level) I was now having to fix a lifetime of mistakes made with my health. I kept getting madder.

I was dealing with all the above while still trying to find employment. I was not finding a job. Plus, my knees keep getting worse. My ability to stand for any amount of time was becoming almost impossible. Plus, my debt was getting worse. I was not seeing the end of any of this. My panic attacks were coming back stronger. I was staying home more. I didn’t want to see anyone. I was depressed. I have started selling Tupperware and it has at least kept some food and my co pays taken care of.
I am no longer angry. I still not happy that it took so long to get a diagnosis, but I am letting go of the anger. I realized that not watching what I eat is just stupid. I have gained everything back. I am 500 pounds. I am pissed at myself right now.
I now have lots of information and guidelines for Lipedema. I know what to do and what not to do. I have discovered that my insurance will not cover anything for Lipedema. So, I am focusing on what I can do to help. I know that I can’t lose the fat/weight in my legs due to Lipedema, but I know what to do to decrease flare up and pain.  Anything to lessen the pain is a positive for me. I do know I can lose the weight from the waist up and I plan on doing that. I know that will help. Even if it is only my self-confidence.
Now that you have read the above you understand where I am at this point. Honestly, I feel like I am basically starting over. UGG ☹
I have had two doctors tell me, this past month, that I need to try for SSI/Disability. This has really rocked my world and not in a good way. I may not have been employed in a while, but I have been working. I have been cleaning houses, babysitting, selling Tupperware, doing extra walks, and caring for a friend. (I have a place to live in exchange I help remind Judi to take her medicines, cook, and do housework, and run errands.) So to hear that I should go for disability lowers my self-esteem. It also goes against what several people that are friends and family have to say. I look at my Facebook timeline and there are lots of posts about how pissed they are about people on disability or any kind of government help. It is filled with comments like “People that don’t work shouldn’t eat or get help.” I always ignore it but now that I am having to go for the SSI/Disability I know what several members of my friends and family will think about me.
Right now, I have both of my legs propped up. My right knee is getting worse. I have fallen 4 times this week. I keep falling because either my right knee or left knee gives out on me. So I have come to accept that I do need to apply for the SSI/disability. So this is the place that I am at right now.