Wednesday, July 30, 2014
I am referring to people with lipedema as lippys. This article applies to those in the more severe stages III and IV. Yes meeting other people like me online was a relief weighed with emotion. I finally met people who LOOKED like me body wise. That never had happened before.
1. Diets don't work on lippys. Of course you want to get as much "fat" weight off as possible but hundreds of pounds of us are fluids in serious cases. The Fat cells are even altered themselves.
2. When a lippy sits up, their bottom half fills with fluids. The lymphatic system is severely affected. In my case there is a two hour time limit on sitting up as well as a danger of pressure sores which in my case are aggravated by the condition. This means my legs [unwrapped but they are always wrapped or compressed now] and lower stomach grows VISIBLY. This was remarked on in my medical records when an at home physical therapist noticed this process especially during exercise.
3. Your legs hurt all the time. Many doctors tell you it is because you are fat and have too much weight on you but it goes beyond that. The more you walk, the more they hurt, the more you swell. Which by the way is something alone that can push a lipedemic into more inactivity. Being a severe lipedema means feeling pain somewhere each and every day. I'm a person that can tune out pain, remember I'm the woman who toughed out kidney stones at home, but that has limits, it takes a toll. There are days where I am far more inactive not out of being "lazy" but just to ease pain.
4. Your mobility is affected. Many severe lippy's do need wheelchairs, walkers or canes and other mobility devices. The weight distribution and if you have lipo-lymphedema which puts even more weight on you via the comorbidity of lymphedema coming to join the lipedema party, means it is harder to walk. Before my legs were compressed, I did have serious worries about my more severe leg destroying my mobility. One thing we need to watch too is making sure my thighs do not grow.
5. Lippy's have the ultimate "pear" shape, which means usually thinner on top. If the right picture is taken, I can be cut off at the waist and look like a much thinner person. Even before I had my weight gain, the hips and butt area were far far larger then my waist. When I lose any weight it goes off my face and neck area first. In fact in photographs depending on my level of fluids, I have a far thinner face some days then others.
6. Lippy's often have severe food allergies. Lippys get sick from beef and a variety of other foods. I have a problem digesting meat and have to be very careful even eating a steak.
7. Lippy's often are hypothyroid, or have other hormonal problems such as PCOS.
8. Lippy's often know by a young age that they are "different" and their bodies and legs do not look the same. Often lipedema comes on in puberty but some women it is later in life with menopause.
9. Severe weight gains like I had with the 400lb weight gain, are not unknown in lipedemics.
10. Lipedema is genetic.
11. Lippy's often have lipomas and hard and other nodules of fat.
1. I would save a huge chunk of it.
2. I would get this rotten carpet ripped out and replaced with laminate or something better.
3. I would hire a painter to paint my apartment [it's been 8 years] and buy good used furniture.
4. I would buy a few more dresses.
5. I would go get a haircut and style and some weaves put in--my hair is too thin.
6. I would give some to charity, and my church.
7. I would help this one friend out.
8. I would get car repaired and maintained better beyond the three month oil changes, I would buy another car.
9. I would buy more organic food.
10. I would go some vacations within my state that were reasonable for my health to do. I would go on some day trips.
11. I would go to a stamp conference.
12. I would go to a lipedema conference.
13. I would get my scooter fixed and a new battery put in.
14. I would hire a cleaner to deep clean this place. It needs it. I am cleaning what I can.
15. I would self publish a book
16. I would pay off the tax man in total.
I'm worrying about money again. At least now there is some food in here and all the basic bills were paid this month. I have had times that are far far worse. When that happens you fear even losing what you have?
The worse thing about being poor or income challenged? The lost opportunities. Sometimes when the years go by, and more things I wanted to do, like travel to see a friend, or getting other things done it gets tough. Sometimes you think to yourself there should be more to life then just living in a box to live in and feeding yourself. Being poor you can't afford to go see anyone. You want to do more for others. You don't want to drive people crazy feeling sorry for yourself.
Sitting at a self-help group last night, I almost wanted to burst into tears hearing the people talk about visiting their myriad of relatives and vacations and activities. Maybe health wise I couldn't keep up, but you know maybe I want to make a few good memories too. My regrets are getting kind of high.
My last vacation, you know where you go somewhere, and see sights and rent a hotel room and visit people for a week was 2004.
My last day trip was 2011.
I know there are people worse off then me. Compared to the homeless and others, life isn't that bad. Recently I am even worrying about our car dying and not being able to replace it. Being without a car sucks for a thin healthy person, for someone like me with poor mobility it is a nightmare, and I lived that way 6 years. I can cry even thinking about it. This means there was no just going out and doing things--during my non-housebound times. No sitting in the park. Not being able to go to church. I'm praying for the car to only need a minor repair not a major.
Sometimes I think I would have been happier in a poorer society where I would not be so set apart for being of such a low economic class. I would have fit in. The expectations would not be that my life looks like the people on TV. America has so many people who feel the way I do, and we are invisible out there.
Living in a town where everyone lives middle class or above, it gets very lonely at times. Most don't relate to your lifestyle or your problems. I am tired of worrying. I need some fun. I need some stability. I need to feel like a human being. The ground hog day life of worrying about bills, and having to go to community charity dinners to get food to spread it out for the week is getting old. I know being disabled does not make you rich. In many countries I would have been left in the gutters, at least in America the disabled aren't thrown into the streets.
Poverty can haunt a person for life. The dumpster diving, going without medicine, the sleeping on rotten mattresses from the trash, being jumped waiting at bus stops are memories that never left my brain. As my life stands now, I am OKAY with it, it is the loss of the car that worries me, the loss of quality of life. I said to husband, "I can't go back to where things were before." I am so tired of the shame, disappointment and worry. Even when a little bit is saved, his work gets cut back, or some other emergency takes it away.
Tuesday, July 29, 2014
from "the girl with curly hair"--Facebook.
Telling people "rulers make the rules" may get me in trouble. One thing is I never was able to conform in the way some folks wanted. Aspergers does not disappear with age either. Some folks seem to adapt better then others. One thing about NT life to me is how the expectations are so narrow. It drives me mad at times. I and husband who definitely has Aspie leanings or is one himself, make jokes, about "warehouse people". This means people they roll out from a warehouse that all dress and look alike. Hey it gets tough always being "the weird" one.
Yes being quiet can be part of this. I seem to waver between talkative times and not wanting to say anything. It is strange. It kind of surprises people, but there are many times where I am quietly observing, and thinking "Those people are insane." One thing about Aspies is many NTs assume they are out of touch and don't know what is going on.
530 Fatties Fat Page Taken Down
Fat Shaming Facebook Page
I had my picture stolen on Facebook before and used on a page where they mocked me for being fat. Old age helps some of the fat shaming ebb down because no one expects the grey-haired and walker set to be "sexy" except for the narcissistic Baby-Boomers who seem to write too much of our advertising. The people didn't like a political stance I took so this was their "revenge". If you take the picture down from Facebook, it erases the post, so that is a hint for the people this happens to. Fat hatred is probably growing worse, especially as society divides between thinner "haves" and fatter "have-nots". Of course thin people who have bodies that burn off food, going after fat people for not looking the way they want them to have some serious problems.