Facts about Lipedema

I like weird people

Bring on the weirdos, well the nice ones anyway. :)

Orange Nazis

Republicans vote for a Nazi in Illinois

Sednas Daughters

Sednas Daughters: International Network of Daughters Surviving Family Shunning

Chart of Abuse in Family Daughter Relationships

about Sedna's Daughters
https://sednasdaughters.com/about-sednas-daughters/

"Behavioral Chart of Abuse in Family—Daughter Relationships
Expecting daughters to endure lifelong abuse from their mothers is as damaging to women as expecting mothers to be perfect.

Possessiveness and Minimization & Blame
• Family does not take responsibility for their actions • Mothers claim birth of daughters ruined her life • Family claims daughter’s feelings are drama • Refuses to discuss or heal relationship issues • Tells adult daughter how to think, dress & act • Condemns daughter for moving away or having a partner • Telephones excessively/demands details of daughter’s life • Accuses daughter of abandoning them if she has her own life  • Sabotages daughter’s relationships with others or with family members/turns younger family members against her."

I had a reader suggest this website. It has some good articles. I hope I can find their Facebook page and wrote and asked where it was, since the link was not working. This website is different in that she focuses on the whole ostracization phenomenon and focuses on those who lost the whole family. I do think this outreach is important. While some can keep some family relationships in going no contact, for some of us who walk away, it is the loss of an entire family.  The malignant narcissists have "won", we end up with no one by our side from the family. Our decades of abuse and shunning have culminated in being free of kinfolk down to the last cousin, niece or nephew.

The chart detailing the various abuses basically sums up what happened to us. We all have to remind ourselves it is not our fault.

With the hoovering, some of it is strange like recently being invited to a cousin's wedding where he just grunted at me in 2006 and never has spoken a complete sentence to me in my life.  I never got in one argument with him but would be friendly and he would simply turn away. The same went for his brother and sister to a lesser extent. I and my husband left that family picnic right after I sat at the table, and asked him about college and he just grunted and turned away.

It occurred that if this person who lived at home until the age of 32 with no job in his parent's attic was somehow able to find a wife, this means he actually probably SPOKE to other people and did more then grunt at them. He wasn't some extreme savant or schizoid. I was so used to rudeness and being treated badly, some things escaped my attention. Others around him supported this treatment of me. There's a reason my grandmother told me before she died, that he was her favorite grandchild. I won't be there of course but it's funny the new things that still occur to me now, even this many years outside the fog of scapegoat abuse.

I do wonder if family "shunning" is growing in modern society, social media, has given smear campaigners more power and ability to reach an audience. In the past, families were expected to take care of their own, and too public of a shunning, may have had worse social impacts when everyone lived in the same town, and knew each other for life. There's positives in modern society in that there's more avenues of escape now and information, but there are those negatives too.

Life Recently

1. I caught a "cold/flu/severe respiratory infection, three times in the last two-three months. Some of these illnesses lasted 2-3 weeks. Obviously I am a bit worried. I have to get tested, I've basically been sick on and off since December 15th. I'm not sure what is going wrong? What's wrong with my immune system? I got bronchitis on the first bout and took antibiotics, but the second two, I got over it and then they merged together.

My husband gave me all three colds/flus/illnesses from hell. He suffered badly too. This was a really bad cold and flu season this year. When he came home with the third one, I even discussed one of us leaving, but where does a person go to escape an illness they don't want? Then you wonder if the other person will need your help and you don't want to leave them! Do you run away from cold germs and race to the homeless shelter when one isn't homeless? It's winter.  I discussed us wearing masks, but they are harder to breathe with and I already have to keep hearing aids from popping out, and hold on to the walker, so that's too much to keep track of. Wearing latex gloves makes me sound like a weirdo. I plan to discuss this with my doctor. My fatigue is still a major problem. Tomorrow I have to get a kidney scan and hope there is no big kidney stone in there.

My diabetes has been kind of messed up since these illnesses. I had 131 this morning but had some blood sugars in the 140s, 150s and even hit a 160 once or twice. Hopefully it will come back down.

2. I got to tour gyms with husband, he was doing something work related. I found myself wondering what could I have done with this body if I could go on a treadmill and be able to breathe? Thin people's bodies work so differently.  All you thin people, don't take that stuff for granted. If you can get up on one of those treadmills, you are fortunate! I still think something more is wrong with Whitney Thore as she gets sicker and more messed up trying to exercise instead of more fit and stronger. She screamed about her feet hurting at this one 8K walk and they looked like they had bloated up to me.

Going into the Y, I got tired because it is so big. That was ironic. They gave us a free day pass. Well that may be good, I plan to use it to go lift weights. The gym nearest my house I could afford the bus to get to, is too expensive at this point but I am trying to figure things out still. One thing the gym people were nice. It was a place more young people were hanging out. I forget the reason I see mostly older people is because everyone is at work or the gym.

I have to get weighed in a week and half. My Flexitouch still fits and my underwear still fits the same, so I guess I am okay. I worry when illness makes me sedentary. One irony of being in bed, is I do debloat, and get wrinkly in places, and I can walk "lighter". Some of the Lipedema pain is lifted. I'm coughing my head off, but there's less pain except the aches of the flu to deal with.

3. I still miss Q. Losing a friend even online is hard.

4. I worry I am bad at giving advice. Modern life is far too complex. I have to remember I can't figure out every puzzle and quit doing it. Comforting people comes natural to others. I would never call myself an empath as some ACON's do because I often lack the right words to say. With the Aspergers that's one of the things that sucks about it, like this feeling of always failing people. "Oh I said the wrong thing..." [AGAIN]

5. I've gotten shyer with age. I need to deal with some appearance issues, and get a new hairdo and new clothes, but I keep spending the money on "practical things"  and just ending up running out of money. I was buying better food, but this was from fears of the illness and diabetes. Well a person can only do what they can. I did finally get my carpet cleaned. I was happy about that! The apt had a brief moment of appearing near normal since we just got it painted last year and the carpet was cleaned. I may hire these people to clean grout on the bathtub.

6. The social life needs work. I still plan to work on it. One doesn't want to get caught in people pleasing or anything like that of course. The reality of disability is only so many spoons, and even a day totally inside, it seems I have enough to do. One weird thing occurred to me, "Why did I remain friends with people who had no respect for me for so long? Even homeless people befriend other homeless people they respect. Us recovering ACONs got too used to no respect. That's one to add to the rule list, "don't stay or be friends with anyone who looks down on you".

7. Cheeto is still president. Please vote at Midterms. Save us. I missed some protesting via weather and illness but plan to go back. We did have a small Woman's March here. I can't march but joined up with them at the end point.  I get tired of the media telling us how great the economy is. I'm not seeing it around here. They are opening Dollar Stores on the "rich side" of town while great sections are shuttered. I plan to take "ruin porn" photos this spring for the heck of it. Today watching Washington Journal on C-SPAN it was scary, they had all these pro-Trump people calling in.

8. I joined a UU fellowship. They treat us pretty well and it's an interactive place, I like that. The minister has good sermons and the services are very multi-media and full of poetry and art too. They seem to have a respect for my husband I find refreshing unlike the other church experiences. He's no longer the "lost soul" and me the "pitiful unequally yoked wife". It's funny I got some good memories back of my earlier UU years. I had missed the intellectual freedom. I know my environment of living in that extremely rural town trying to seek after some idealized life after escaping the horrors of Chicago, did influence me greatly. I guess I'm getting a look at life, kind of going full circle. I've been happy being there, and enjoy the discussion and intellectual stimulation.

9. I got bifocal glasses, my husband had an extra writing project and the money was finally there, I had to get cheaper ones from the "free" clinic for 200 bucks instead of a mainstream Optical place wanting 550 bucks but they look good.  I may try and get some online ones later too as a back up. I didn't realize how bad my vision had gotten, now I can read signs, and I can see bark on trees. I wonder if it will help my art. It was great to be able to see and not squint.

10. I'm working on the zines, reprints of articles and ones to add. Also painting an unusual painting of war protesters but hoping it will turn out.

Books Recommended for Autistic Women

Book Recommendations for Autistic Women

The Gaugin Connection – Estelle Ryan
nonfiction book about an autistic art insurance investigator.
not the best writing, but nice for representation.

Thinking in Pictures – Dr. Temple Grandin
Grandin presents her life & mind.

[I read this one, she is a much more spatial/mathematical thinker then I am, I sometimes wonder if Grandin has Kanner's Syndrome, the subset of autism, where connection to other humans is not so desired, Aspies like me miss it if we don't have it and yearn for it. One thing her "thinking in pictures" applies to me. I don't always think in words but in pictures and sensations. ]

Asperger’s on the Inside – Michelle Vines
Vines’ memoir.

The Autistic Brain – Dr. Temple Grandin
Grandin explores recent research & gives advice.

[This book was interesting. It is kind of technical on medical things. I disagreed with some of her hard-edged stuff regarding careers. I am not sure every Aspie is going to find the same degree of career success. She is right Aspies need to work hard and try their best but not every Aspie has the same physical health or family support. I think she is naive about some of the social demands put on Aspies in the workplace, where people without super-star skills, may not be able to wind their way through so easily]

The Highly Sensitive Person – Dr. Elaine Aron
Recommended to be post-Dx, 

[I read this one years ago. It kind of triggered me. I remember feeling over-stimulated by the book which probably wasn't her intention. One thing in life, I have dealt with is making myself less sensitive so I am not crying all the time. It did have some information on dealing with anxiety and seemed to be honest about how a complex world seemed to overtake me. Of course it would take years to realize my hyper-vigilance was born out of severe narcissistic abuse, then a natural born tendency. Of course Aspergers plays a role in anxiety, but no contact reduced my numbers of panic attacks so much, it was amazing.]

22 Things A Woman With Asperger’s Syndrome Wants Her Partner To Know – Rudy Simone
Read this with my partner & it helped us discover strategies to better support one another.


[I skimmed this one at a book store, was too poor to buy it. I always saw myself as married to a fellow Aspie anyway but one therapist told me he is just very intelligent and not an Aspie. She agreed with my diagnosis. He can talk to people far more comfortably then me though.

The book seemed more geared to AS and NT partnerships. I don't think I would have lasted with a typical NT though.  They probably would have bored me to death. Do normal couples sit around discussing history and politics? He just came in my bedroom to tell me about a book he is reading about global warming called "The Water Will Come". I asked him "What large American cities are on the list?" He said, "New York". That's a bit worrisome. I did research global warming and changed my mind on it, I read scientific descriptions and finally figured out what they meant. It's happening.]

All the Weight of our Dreams – Brown/Ashkenazy/Onaiwu
Re: the intersection of race & autism. Racialized & pathologized bodies like mine.

Bittersweet on the Autism Spectrum – anthology
A lovely read. Various & individual perspectives/stories/paths.

I am AspienWoman – Tania A. Marshall
Shows profiles of several successful adult autistic women. Great for self-esteem, planning, & motivation.

Pretending to be Normal – Liane Holliday Willey
Memoir on late-diagnosis. 

[She got diagnosed as an adult. Well I did too, but at least this told me this had happened to others. She does have some flowery language I had a hard time grasping and she seemed higher functioning with children and a career, so I didn't relate to all of the book. I think she does have Aspergers, it's just not as severe as mine, and she had diagnostic end notes that helped me.]

Women and Girls with Autism Spectrum Disorder – Sarah Hendrickx
Sarah researched autism from the outside looking in. Then she was diagnosed herself. 

Nerdy, Shy, and Socially Inappropriate – Cynthia Kim
Based off her blog, a memoir on late-diagnosis & coming to terms with it. Highly recommend.

[love the title on this one want to read this one]

Aspergirls – Rudy Simone
Very popular & relatable but read it in chunks because it can get quite heavy. 

[This one is the best, I wish I could afford a copy for everyone I want to understand me. She sums up my life. I loved one section where they talked about aging with Aspergers. I think that is a topic that needs explored more in depth.]

Odd Girl Out – Laura James
So relatable I had to take breaks to cry & process. Beautiful.

The Empath’s Survival Guide – Dr. Judith Orloff
Recommended to me post-Dx. Incredibly affirming, validating, and helpful.

[I read this one years ago. I don't consider myself an empath. I know some ACONs do but when it comes to nurturing and comforting people, I'm the biggest stumbler and bumbler out there. I did used to have people come and use me as a counselor, but I think that may have been more bad boundaries on my part then any would be skill in it.]

Asperger’s and Self-Esteem – Norm Ledgin
Great examples of wonderful achievements done by autistics.

Neurotribes – Steve Silberman
*not pictured but absolutely necessary read for everyone before they speak about autism. Steve gives an overview of the history of the concept of autism.

[I definitely want to read the ones I haven't yet.]

Abuser

This blogger is an atheist but I find some of his videos hard-hitting, this one definitely puts the negative view of God, especially in the evangelical and fundamentalist branches of Christianity on display. I asked myself as I was deconverting, "How can there be true love and respect between two beings when one is under duress and "threatened" with hell?