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Ok, I was a little frustrated when I wrote my last post. I had just seen someone who I had not seen in 8-9 years, love deeply, but for valid reasons had not seen who just wanted to give me advice/websites/plans/diets etc. which was sure to make my lupus go into remission. I was a little triggered. I mean I get this sort of thing a lot, but I felt, with this person, we had other stuff to discuss. Why is it that we never talk about the tough stuff? We use platitudes and vague references to dance around the really meaningful conversations. Isn’t this the stuff we are supposed to feel safe to talk about with our closest friends and family? But, we don’t, we don’t want to hurt someone’s feelings, we don’t want to be pushy, mustn’t draw attention. Then you are left with a situation where you just stop seeing someone because there is so much stuff between you unsaid or worse yet someone dies and nothing was ever discussed and then maybe if you are lucky you find a good therapist to work through it with (I was lucky, I have a great therapist).

It is 2:00 a.m. and as I lay in bed unable to sleep it was the idea of the feeling of safety that kept roiling around in my head. There are so many ways to feel safe and unsafe. Like above do I feel safe enough to tell this person how I feel,  do I feel safe participating in class (is someone going to belittle or laugh at me) do I feel safe walking out to my car (because I am a woman and never really feel safe in public) or I don’t feel safe at home because my environment is making me sick (pollution, mold, endless reasons). For the most part in my life I have felt physically safe, I am 46 years old, 5’9 and large framed, and have been fairly athletic (not from any prowess but as an attempt to control weight) throughout my life. So in my adult life I have always felt safe. As a kid I was emotionally bullied, but never physically, probably because I was always bigger than everyone else. The only times in my life I can remember feeling physically unsafe was with my father, he had a temper and was unpredictable. He would beat us with a belt, and you never knew what would set him off. He was also emotionally abusive, much more frequently (like daily). We knew he loved us fiercely, but it took me a lot of years to realize my father was an asshole.  

I bring up the bullying and my father because both of these situations took place because somewhere the structures which make us feel safe, i.e. rules, fell apart. I would bet that for many Americans the last time they truly felt that terror of being unsafe was in childhood, either from an abusive parent or a bully. (I am not discounting the large percentage of Americans who never feel safe because the color of their skin, because of how they were born, because they are in an abusive situation, and many other reasons). With the bullying it probably happened because no adults or figures of authority were around. With the abusive parents, they were the figures of authority. In both of these situations rules about how people treat each other were not being followed. If you can remember back to middle school, think about situations where there wasn’t a teacher or a coach around. What happened? The biggest and meanest usually did unpleasant things to the smaller and timidier. Sometimes the bully was small and squirrely, what matters is that take away the authority and some people will act out their baser emotions on the people around them. Not all, not even most, but enough to be scary. 

I hear so much, from people who are smart, kind, wonderful people that we need less government intervention in our lives. They are taking away our freedoms with all of these rules and restrictions, they are destroying businesses. I can’t say this loudly enough, rules are there for a reason, because some people are bullies and abusive. It might not be in the middle school locker room in but in a corporate boardroom (although I would be willing to bet if we had a time machine the same people were bullies then too). Some people without explicit rules and the threat of dire consequence will always act out their baser instincts either because they were not taught to control their emotions and wants between ages 2-5 or because they were abused and that is the only way they know how to interact with others. That is why we have laws and rules to protect everyone else. 

The biggest example which comes to mind is the housing bubble of 2008. There were virtually no regulations on the bundling and selling of home mortgages, so lenders were encouraged to give very risky loans. These loans make some people TONS of money, but they jeopardized the entire system. Well after the entire bottom fell out, after we bailed out Wall Street, new regulations were put into place to prevent this from happening again. Most of those regulations have since been lifted, because they are “stifling” business. Hmm… whose business, who ended being hurt by the housing crisis in 2008, was it the bankers, was it Wall Street, or was it the millions of people who were suddenly upside down on their mortgages or lost their homes all together as they saw home values plummet. I am not talking about people buying houses they couldn’t afford, I mean people who bought a home in good faith, that is suddenly worth half of what you owe on it. 

Another example is the misuse of authority or power by the people who are supposed to protect us, kind of like my father. For an entire segment of our population, people with dark skin, they never know when they are pulled over, when they interact with police officers if they will walk away unharmed or even alive. People who respond to this with “Blue Lives Matter!” are missing or misdirecting the point, yes, of course they matter, but that is not what we were talking about. I have never felt in danger of my life when I have been pulled over by an officer or hesitated to ask an officer for help, but I am white. I didn’t really “get” it until one day in the library (when I was still a librarian) I was talking to a group of kiddos and one, who was black, said “Mrs. Babb, I don’t go anywhere without first thinking about the color of my skin.” his implication was is this a safe place for me to be while being black. That shocked me to my core. I am not stupid and I am student of history, I know about racism, Jim Crow, inequality. I had never internalized the daily  impact it has on the lives of the people of color in this country. Like any normal compassionate person, when I thought about my babies, my students having to live that life it both broke my heart and enraged me. How could this be their reality, it is (at the time 2015-2016)? Aren’t we, as a society past this? 

All of this is to say societies need rules, laws, but more than that they need a collective agreement that laws and rules are for everyone’s good, and not just for some people. When laws are ignored, broken, or not equally applied you are left with situations that make people unsafe. Not with a feeling of being unsafe, with a reality of unsafety. And you know those bullies back in middle school weren’t real fond of the rules either..

I didn’t even talk about what is going on at the border.

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Accept Me As I Am (Isn’t that a song?)


This is an open letter to my friends and family, the people who love me and who I love. I know you are struggling with my diagnosis (so am I), struggling with feelings of helplessness (so am I) and wish with all of your hearts that there were something you could do/say/research that would make me all better (so do I). I understand that it is extremely difficult to wrap your head around the fact that I will never be the same again, that the life I lived before is gone (I still struggle with this every single day). I can understand how when you see me I don’t look that different, maybe a little tired, but I don’t look sick, so maybe I am not that bad (I wish the cost wasn’t so high, that my system didn’t require days of recovery at home shivering in pain in exchange for a couple of hours of being out in the world “looking/acting normal”). I know you are excited to share this new diet/medicine/treatment program with me because you love me and just want me to be better (I sincerely want that too and have read (and tried) the diet books on autoimmune disease, gluten free diet, Whole 30 diet, etc. right now I am trying to live by the advice of my rheumatologist, gastrointestinal doctor, neurologist, cardiologist, ear/nose and throat doctor, acupuncturist and assorted other professionals I see).

Many days it feels like all I can do is to keep my head above water, I don’t/can’t eat much, try to exercise, but when I do, I usually make myself sick, I have really weird sleep patterns and rarely sleep through the night. The question that kills me, more than any other “When do you think you will go into remission?” or “Do you think you are in remission?” I don’t know, I can’t know, I wish I did. I just know I am not now. It is a long, long, long road. I know you just want to find the “magic” bullet (so do I) but I don’t think it exists.

What I do need and miss, is someone to hang out with me. Someone to talk to me (which this is fairly huge for me because I such a committed introvert, but heh, even I miss people a little). Let’s go to the movie, or better yet come over and watch a movie with me (I know I am not much fun, but I do have an off color sense of humor, that is worth something, right?). I also have a HUGE array of craft materials, pretty much all of which sit in their neatly organized boxes because I don’t feel like using them, but maybe we could do something low key, like paint a bowl or eat popcorn out of a bowl. Tell me what is going on in your life, what is going on at work (the interesting stuff like who’s kid did what, who’s having a baby, but not how horrible educational funding is in Oklahoma, I already get that) tell me about your life, about anything. If you want to make something, I might not feel like doing it myself, but I can probably walk you through the process, I can make about anything!

I know this entire situation is deeply frustrating for the people who love me, but what I need most is for you to accept me as I am. I still struggle everyday and when I have to spend so much energy reassuring you or trying not to argue with you about my diet/sleeping habits/exercise, it saps what little energy I have. Just accept me and be with me. I completely and utterly wish my life were different, it isn’t. I am trying REALLY hard not to rail against that, I can’t absorb the angst of the people I love too.

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Excited! and Dismayed…


I just had someone like one of my blog posts! That means that someone (other than my husband, who doesn’t really have a choice) read one of my blog posts! I know I said I was really just writing as a way of release, but who doesn’t like validation, right? I know I have been really sketchy about blogging, I could never “do” this as a vocation or for that matter “be a writer”. Although I do have ideas for several YA sci-fi novels, sketched out in my head and I was a librarian, so I think I could do that, if I just had the whole dedication/brain working thing. But alas, I don’t. :o)

I am also excited because I have finally started building my store on this website, it was one of my original intents in creating a website. It will take me awhile to recreate everything I have on my Etsy store (I have 691 items as of this morning) and I am not closing it, but I think I will be able to do more with the website, like newsletters and notices of sales, fun stuff.

No Hate

Ok, now the dismayed part. I don’t get the hate. I am talking about all of the hate I see swirling about me on a daily basis. When I say that I am referring to social media as I am home bound pretty much except for doctor’s appointments and those aren’t real political.  I know I live in a red state, but I don’t understand how people who seem to be kind, warm understanding individuals treat me one way (good) but then act/feel/treat people who look differently (black, Hispanic, poor, insert minority group here) or who were born differently (LGBTQ) as less than. I hear everything from blatant racism and homophobia to just privileged cluelessness. I truly don’t get it. How can you look at another person and not see them as a person? I mean I understand treating someone differently because of their behavior, if they are a jerk to you, you don’t have to hang out with them. You might try to understand why they are a jerk, but some people are just jerks. I honestly do not like my ex-mother-in-law (first husband’s mother), she was a jerk. But it wasn’t because of how she was born or how she looked, it was because of how she acted/treated the people around her.

I know our ENTIRE nation is struggling right now with these questions as the people who should be providing leadership are acting in ways that would have had them sent to the principal’s office if they were still in sixth grade. But, I honestly feel it is up to each of us as thinking, literate adults to determine our own morality and we can’t use the failings of our public leaders as an excuse for bad behavior. We have to hold ourselves to a higher standard. When our kids say, but x did this or said this, we have to say, yes and it wasn’t ok when he did it either.

I have talked about how I spent 12 years as a middle school educator in previous blog posts. Here’s the thing, this is why I think all of this is so very important. I have had sixth grade babies over the years who were gay, they didn’t know they were gay, but they were gay. It was obvious, they themselves were kinda oblivious to the whole  boy/boy girl/girl whatever thing because they hadn’t arrived there yet developmentally. But I guarantee you that within a year or two when they started struggling with it, someone in their lives told them they weren’t natural or it was a sin. These children, these babies, we have to protect them. To me, that is the MOST important thing. There are so many people out there preaching hate and it is all based on ignorance. Just step back and think about it really, think about the cost, think about the babies, and is it worth their lives? We have to protect the children.

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Hello! Welcome! I’m Jennifer and this is my conglomeration of things I want to share. This website is a little bit book reviews (I am a recently retired high school librarian, although I spent 12 years in middle school too, so half my heart is there), a little bit machine embroidery (I make and sell designs and finished stuff on Etsy and on this website), a little bit being an adoptive Mom to an adolescent (we adopted our son when he was 12, he is now 18) and a little bit Lupus/Fibromyalgia (that is the reason I recently retired at age 45), that last one really sucks… I will probably also talk about cats, gardening, canning, sewing, quilting, science fiction, fantasy, whatever I happen to be obsessed with at that moment in time and my chemo befuddled mind will let me focus on. Me and tyler

This website is really a vanity project/someplace to talk about the things that are important to me and/or I am struggling with. Ok, I keep ending my sentences with prepositions, I hope that doesn’t bother you, I know I am breaking a rule, but you will have to bear with me. I guess what I am trying to say is I not looking for any kind of response or reaction, but if what I write or share does strike a chord I feel finding people who are experiencing the same things can really be cathartic. I have to warn you though, I really have a twisted sense of humor and don’t really have any sacred cows. So you are warned.

Besides the heavy stuff, I will share the stuff I make (when the Lupus lets me), about the books I am reading, have read and my hobbies cause I am a big ole nerd and I get really excited about making stuff (I keep using that word), the best books ever, and hobbies.

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The Isolation…

The isolation, the desolation, the filtration… just kidding. But seriously, I think over time a very difficult aspect of Lupus is the isolation. Lupus is your immune system hyped up like a five year old the day after Halloween, right? So we take all these drugs to shut down our immune systems. Because when our immune system is going bonkers, it isn’t just attacking foreign bodies, it is attacking our bodies, specifically our organs. So, we take all these drugs and have no immune system, all is good, right? Well, without an immune system, the common cold is fairly nasty, not to mention the flu. A girl in my Lupus support group DIED from the flu in January, so now I don’t get to go anywhere, didn’t before, but now I am really home bound. For the most part this doesn’t bother me, I am kinda an extreme introvert and I am pretty good at amusing myself. Not to mention that I sleep, a lot. But… occasionally, I miss outings.

I really miss work and my critters (aka students) and peers and all that. This past week teachers in Oklahoma have been walking out demanding more educational funding, because it is bad here (Like 40 kids to a class, 4 day a week school, no supplies, everything but sports being cut bad) and I so want to go help. But I can’t, because I have stupid Lupus (I promise to stop whining now). I am so proud of the people I worked with, my colleagues. I worked at Edmond Memorial High School and the teachers from this school have done a tremendous job organizing and coming together, it is just incredible, they have become leaders not only for the district but in some ways for the movement. I feel like this is a historic event that the people of Oklahoma will talk about. It feels like a paradigm shift, although I don’t think our governor and legislators (at least the Republican ones) have figured that out yet. Our governor keeps saying things like, ya’ll come down and say thank you for these here scraps then get back to work, ya hear! Ok, I ad libbed a little there, but not much. I can’t figure out if she and the legislators don’t know how insulting they are or if they are intentionally insulting and just don’t care.

Whatever comes of this, it will not be a return to the status quo. I sincerely hope this will enable Oklahomans to go to the voting booth and be swayed by something other than pro-life/pro-choice because I think that is all most people use to vote on now and it keeps getting these people elected who don’t care about public education (they all either went to private school or were home schooled) and are in the pocket of the oil and gas industry. We, as a people, need to quit doing the same thing and expecting a different result… ;o)