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.htmlAs 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.
