Sunday, March 26, 2017

My 600lb Life: More Untreated Lymphedema and Lipedema in this case!

It is so obvious to me Tracy has Lipedema or a condition like it, and she needs care for her legs and compression therapy far more then weight loss surgery. This lady was discussed on the Facebook Lipedema communities, and many commented how her upper body was far smaller then her lower, and how her legs had swollen to be so huge. She talks about her legs swelling and "they are starting to hurt really bad". It is criminal to me how women with Lipedema are NOT diagnosed and go into severe stage Lipedema due to fat discrimination. In my case and this ladies case, fat discrimination has really impacted their lives horribly. She is very thin on top too, this was true of me too. My bust is 30-40 inches smaller then my hips. I do not know how weight loss surgery will help her, her problem is severe Lipo-lymphedema. Some Lipedema women can improve from the removal of some fat weight, but if you are heavy not from over-eating but from Lipedema, how are you going to lose weight with weight loss surgery?

I got frightened yesterday, my face and hands even swelled up and I could barely walk. We had gone to charity meals, and to get our taxes done by Vista volunteers, two protests--half an hour each but required some walking on my part and I was very busy [for me] for several days and while some water gets taken off at night, I swelled and swelled. I am realizing how drastic the differences there are in photos depending on how swollen I am. In my case, one can literally watch body parts GROW, and yes it is scary. My stomach grows from fluids and so do my legs. My leg wrappings had failed during the taxes being done, one had already been wrapped twice, and I had been up for several hours and my legs just bulged out like I was a in a horror movie. My stomach grew huge. I felt afraid.

 The pain grows very bad too when this happens and I was limping near the end of the day and ready to cry. My exhaustion hits a wall. This can happen after JUST 3 and 4 hours of being up and moving around some while sitting some. It scares me. Sometimes I wish I could win the Lotto so I could get some Lipedema hard core experts and Lymphatic specialists, I need them. My left leg got huge yesterday, and it used to be even bigger. My right too is a swellathon, I am constantly fighting.

I went into bed by 5pm and stayed there, and did Flexitouch. I can walk  better now and legs are down somewhat but this is a nightmare I can't even explain to people. Even my hands and arms grow, where my fingers go from being thinner to puffier. My face grows too, my double chin turns into a triple chin, and it grows more puffy and round. Facebook facial recognition FAILS on me. I am never tagged. I am serious about this, this is how much my face changes.

I am tired of people with severe Lymphedema and Lipedema being judged. It does affect me mentally when I am swelled up because I know people react to me oddly thinking I have "gained weight" from overeating. It makes me self conscious and I felt it yesterday. Sometimes this disease is very hard on one's mind. Those who are around me more, know it is transitory. I posted a picture of me on the thin side, when I had been in bed from the flu for a week and everyone was like "Wow you lost weight" but I was bloated back up within days. Today I have to stay in bed or I will get a leg infection. I hurt all over.

How could doctors look at that woman's body and not know something was MEDICALLY WRONG besides being the classic bigotry of labeling her an OVEREATER? I got diagnosed because nurses and daily physical therapists coming to my house, SAW ME SWELL to the point the charge nurse sat me down and begged me to go to Mayo. Fat bigotry is literally costing lives. My legs got caught in time right before I would have lost my mobility from their hugeness but it is a constant battle. My medical reports consider me severe, one reads "Patient presents with lipo-lymphedema [Lipedema] severely affecting bilateral lower quadrants". This lady's legs are even worse having grown to the point she can barely walk or more and the doctors are focused on weight loss surgery instead of treatment for Lipedema and Lymphedema? It is an OUTRAGE!

I do think Dr. Now did decide NOT to give her weight loss surgery, I have to watch the whole show. Treatment of Lymphedema and Lipedema can be difficult. When the therapists wrap my legs, they got them down very very far, my legs are far thinner then I even imagined. I can only maintain them to a point and keep them from growing. Sometimes I wish I could afford a stay in a rehab center where they could take them down further. In my case sadly I am high enough stage to have what they call "tissue fibrosis". I also am diagnosed with "severe abdominal swelling".  I almost lost the ability to walk from untreated and undiagnosed Lipedema. This show needs to talk more about Lipedema and Lymphatic disorders. I have seen other patients on there, where I believe they have primary Lymphedema disorders. Too many assume the people with lymphedema alone got it all from being fat in the first place. This is wrong.

Medical treatment can get people to lose weight, without weight loss surgery. I have kept around 200lbs off for 20 years from the peak weight. My life almost ended in 1997/98. With the swelling I am in a constant battle. Lipedema often brings hormonal disorders and did in my case affecting my weight from the PCOS and pseudo Cushings. I live in fear of weight gains even at this supersized weight and checked my measurements this week, my waist was at 59-60, and I had lost 2 inches on the bust,  the hips were around the same somewhere in the mid 80s. I do this fearing weight gains, knowing if I got back up to the 600s and near 700 I could die. I have told my husband if I ever cross the 550 rubicon again, I would asked to be hospitalized. Many severe stage women with Lipedema have to battle for their mobility everyday. I wish I could win the Lotto so I could get some high tier lymphatic specialists and rehab time in but I am doing the best I can. I don't want to know where I'd be at now if I did not have Flexitouch to take off fluids at night and where things would be if my legs had been allowed to keep growing and growing some more.

I hope Tracey got diagnosed properly and gets all the help she can. She was able to have fluids removed which is a good thing.

Fall in Love

I fell in love with someone who "gets" me in 1994. Any idiots trying to force me to be normal would have been woefully disappointed!

The Republican Waterloo

A good read - no matter what party / philosophy you identify with. (10-15min.)
"Whatever else the 2016 election has done, it has emancipated Republicans from one of their own worst self-inflicted blind spots. Health care may not be a human right, but the lack of universal health coverage in a wealthy democracy is a severe, unjustifiable, and unnecessary human wrong. As Americans lift this worry from their fellow citizens, they’ll discover that they have addressed some other important problems too. They’ll find that they have removed one of the most important barriers to entrepreneurship, because people with bright ideas will fear less to quit the jobs through which they get their health care. They’ll find they have improved the troubled lives of the white working class succumbing at earlier ages from preventable deaths of despair. They’ll find that they have equalized the life chances of Americans of different races. They’ll find that they have discouraged workplace discrimination against women, older Americans, the disabled, and other employees with higher expected health-care costs. They’ll find that their people become less alienated from a country that has overcome at last one of the least attractive manifestations of American exceptionalism—and joined the rest of the civilized world in ameliorating and alleviating our common human vulnerability to illness and pain."
The Republican Waterloo

Healthcare tied to employment is a definite form of slavery. We experienced already blatant discrimination due to it. That last job of my husband in 2007 where he got a good review in December but got booted out in Feb/March when I went on his supplemental insurance, the memory of that stays with me. I said to my husband how stupid and out of touch are these Republican leaders? Even the other Republican legislators knew the outrage from their voters would cost them big. My husband has not had health insurance in TEN YEARS.

I am glad I have been protesting, and national outrage helped curbed the idiocy of these leaders.

Thursday, March 23, 2017

Avoid "Fixers"

Saw this cartoon the other day. Often on here over the years I have mentioned "Fix-It's the people who got with me, not based on any acceptance but based on taking me on as a project or something to "fix". ACON's for the sake of their mental health need to avoid people like that like the plague.

Naked Pastor Cartoons

Saturday, March 18, 2017

Fighting With God

Wrestling with God

Too many people have been painted a picture of God that looks more like a jealous boyfriend in a drunken rage than the peaceful, inclusive Rabi who said “if you’re tired and burnt out, come hang with me- because my way is light and not burdensome”.
As a result, our concept of God internalizes into all sorts of other broken thinking, and leads us to see everything bad that happens in life as being a divine punishment from God.
Over time, we actually start to believe that God hates us. The concept gets rooted so deep, that even when we mentally reject it, our “emotional memory” still uses it as a go-to hermeneutic for understanding life events.
I’ve been in relationships before where I couldn’t do anything right and was chronically reminded of my own shortcomings. Unfortunately, these situations don’t often cause us to become better- instead, we eventually start to believe that we’re just as bad as other people think we are.
I can’t have this kind of relationship with God anymore.
I hope that you can’t either.
Let’s repent together, and stop thinking that God hates us.
Cause honestly, I don’t need anymore enemies (you should see my in-box).
I need friends.

Some of this is left over from dealing with Mrs. Curses. Spiritual abuse like narcissistic abuse can have it's effects too. I have been fighting with God a lot. Some would call it wrestling with God. Others would call it constant arguments. Like this guy above, I can't have this kind of relationship with God anymore either.

I left the IFB as I have mentioned before and a lot of things are changing for me. Seeing God as just another "person" I got to toe the line for or else, wore me the hell out. Unconditional love is a hard thing for ACONs to grasp a hold of since we never had it.

I guess that's my best way to explain it.  I'm done with legalistic churches trying to dictate endless "rules" but I know like many other abused people I struggle with a vision of God being like my abusive parents.

 Like this guy above mentions, there is a lot of time, I feel like God hates me. Some of my health problems are so extreme and the poverty unrelenting and some of the rest, there's days I have just shaken my head. I went around crying to close Christian friends that maybe God hated me like Esau and maybe I should just give it up but they assured me this was not true.  My husband during some of these days, asked me if I was becoming an "atheist" again, I said, "No I do not want to become an atheist again, I believe Christianity is true." He cracked some jokes, I didn't find so funny, saying "Let's take God into the parking lot and kick his butt!" I'm not sure if he was trying to give me a deeper message here: ie God is in control don't be absurd here Peep, or just trying to make me laugh while I was shaking my fists at the heavens.

I realize my relationship with God was seen as a person who could not do anything right. Ie, the whole relationship was built on endless rules and regulations, yes I believe relationship with God was the most important but this idea, that I was "not good" enough for God was in me too. I'm not sure how this will all spiritually pan out yet but it is a process.

Thrush in Hell

 See all that stuff above, I USED all of it. I even have tried crushed Tums, and Benadryl on thrush sores. It didn't work. Warm to hot water with salt, did help "some". Vinegar didn't do squat. Baking soda didn't cut it for me either. 

Sorry I have been gone some time for me, I got the flu and then later I go such terrible thrush, I thought the mouth pain was going to kill me. One day I wanted to clean the kitchen, and it took hours, and I followed my old Occupational Therapist's directions of resting and working for ten minutes at a time. I bleached the whole thing down, I scrubbed cupboards. The fridge was left undone and my husband had to wipe the tiled floor down, but it looked a lot better.

We had maintenance people coming into the apartment to fix a leak in the bathtub plumbing that had raised up a little mold, which is thankfully all fixed and gone. I didn't want them seeing the place look like a pit. One thing worries me every time I "push" myself it seems I get sick. It is frustrating. I can't spend my whole life in bed.

 I got this terrible thrush. My mouth felt like it had been lit on fire. I have tried everything probotics, avoiding sugar like the plague, drinking organic cider vinegar, eating yogurt--I love Siggi's the kind they don't add a ton of sugar to like too many others but can't always afford it, and whatever I can come up with. It's like my immune system is toast.

The flu was horrible but everyone told me it was going around town and even thin and "normal" people were barfing their guts out. How on earth am I catching things when I live as a near hermit? Don't ask me.  Two weeks later, the thrush mouth sores felt like hell warned over. I was crying for 48 hours straight, they kept me awake. I had blisters all over the black of my tongue down my throat.  Shaking my fist to the heavens, I screamed at least twice to God, "Why do You hate me?" My husband said, "You need to go to the ER!". I said, "It will cost 500 dollars, I know this crap is THRUSH!". Nystatin failed. My at home doctors called me in Diflucon. My liver may get eaten but it did make it go away. Linocaine helped with the sore pains, but many I could not reach. Put on the edge of a spoon handle, that was the only way I could drop it into some of the farthest reaches of my mouth and tongue.

 It was so disgusting. I took Nyquil for pain and to allow myself some sleep. I'm even dipping all my toothbrushes in hydrogen peroxide, and other stuff to avoid it again. My sugars have been pretty controlled so I don't know why this is happen. My immune system is crap.  Did two car break downs and lack of money and stress do it? Was being low on food and stuck with food pantry stuff doing it? I felt desperate for salad a few days.

Question to readers, what kind of specialist would deal with immune system problems? I am getting the flu, and thrush way too much. Ironically leg infections have been stable at least lately. I don't want to be given the "You are diabetic and chronically ill lectures" without any real answers as to the root cause. I am not on any steroids either at this point in time although I do use some steroid cream on the psorasis. I have not taken any antibiotics in around 6 months.  I am avoiding sugar like the plague too.

This 600lb Life with James K Horrified Me

This poor man has leg infections up the whazoo. One of the most mistreated areas for fat people is for lymphedema and of course Lipedema. Even looking at this man's earlier pictures, one can tell his lymph system is falling with the multiple bulges in his legs. They claim he is an eating addict, like they do with everyone on 600lb life, but one thing I knew for sure seeing this show was this man had serious lymphedema and infection problems that were being massively NEGLECTED FOR YEARS. I am surprised he had not died alone from that. He doesn't have the best personality either. This show doesn't make fat people look good. Going to Dr. Now should have been the last thing on his list, his legs were so bad. I didn't like seeing the Dad mortgage the house or the young daughter having her future put on hold to be a caretaker. The marriage also seemed off. I think they chose the most extreme fat people for this show even beyond the physical.