My last round of DHE infusions did not go very well. In fact, they made me so sick, or I was just so sick from my Monster Migraine in general, that I missed the last infusion day because I was unable to drive. The DHE infusions have, occasionally, given me a small downgrade in the level of pain I experience, but only for a few hours. Overall the infusions cost about $150 a day after the $350 I pay for my medical insurance every month, aren’t very effective, and my husband and I have agreed to stop them.
This doesn’t mean I won’t get other kinds of infusions. I’m still positive about higher doses of steroids. I think there is room to explore there, and I’m going to talk to the lovely Dr. H. about it at our next appointment. I don’t feel that anti-seizure medication is effective, nor is magnesium (it actually makes my pain worse), but there are still other options to try.
Before my last injection series my doctor asked if I really wanted to put myself through the extra Botox pain and nausea again. I wanted to try at least another set of Botox injections because my doctor, whom I trust and respect, said that sometimes the first batch doesn’t really “take” and people have better results the second time around.
I am now well into my second time around and, if anything, am worse off than I was before.
Therefore I do not think I will go the Botox route again. I’m officially ruling it, DHE, and magnesium out. The Botox also affects my appearance and, at present, my self esteem is low enough due to my inability to work, perform simple household chores, bathe like my OCD self likes to bathe, wear makeup like I like to. I feel unnatractive and useless, and the Botox feeds into that by amping up my pain and hurting my self-image.
I gave it a fair try.
I finished reading Aspergirls and I have all of this information in my head about Aspergers and about myself and about how Aspergers and I fit together so perfectly. I really want to put an accurate picture together but I’ve had a difficult time explaining my own deficits to my family. Aspergirl does a great job, however, so my project for the day is to go back through the book and underline those sections that scream out at me. Then I will figure out how to make my Kindle put that information into something that I can share on this blog.
One of the HUGE DISCOVERIES I’ve made is about health problems I’ve had all my life and how they relate to Aspergers. People with Aspergers often suffer from painful digestive disorders, nausea, migraines, seizures as children, and hyper-sensitive skin. All of these things apply to me and have been a major negative factor in my life. Knowing that they may not be disparate issues, but in fact all fall under the umbrella of an Aspergers diagnosis is epic.
Of course I am also excited about the potential band-aids and coping skills I might find on this Aspergers path that will help me be a better wife, mother, friend, and employee. I’ve spent my life figuring out how people want me to behave and then presenting them with what they want. The problem is that, especially in my marriage, I can’t keep up the charade 24-7 and eventually I break down under the stress of a world with which I feel I am constantly at war. Aspergirl talks about two types of Aspergian meltdowns: depression-based and temper-based.
I am amazed that 1. someone actually admits the horrible behaviour that they exhibit in the privacy of their own home, or the bathroom at work, or in their car and 2. other people actually behave like I do. I’ve had several meltdowns at work, all due to some injustice that I felt was being done, and I was called out for insubordination. I’m a stringent rule-follower. I love rules. Rules and steps and guidelines and processes make it easy for me to know how to behave, what to expect, and what to say or do next. It’s the end of the world if someone tells me I’ve broken a rule.
Just ask my husband about my three traffic tickets. I still feel guilty about not knowing that I should move over a lane if a police officer is on the side of the road and has their lights flashing. I don’t remember that being in the book. I would have done it if I had known. I apologized to the officer profusely. I didn’t mean to put him in danger. I accepted that I might go to jail. I got off with driving school and “improper driving.” I just made myself tense thinking about it. HA!
What I’m trying to say is that I have horrible, ugly, kicking and screaming temper-tantrums sometimes… no, frequently, over what my family and my employer and my friends (of which I have very few because I’ve alienated most of them with my suckass behaviour) consider to be unimportant issues. And now I possibly know why I do and that it’s something that I can’t help doing, but that can be avoided with education and recognition consideration.
In 22 Things a Woman With Asperger’s Syndrome Wants Her Partner to Know, the Rudy Simone mentions the hyper-critical nature/flaw of women with Aspergers and that it is due to our need to control our surroundings and our visualized “ideal” of our surroundings. When our partner does something that we consider to be “wrong”, whether it is wrong or not, but just happens to be contrary to our image of what is “correct” and “ideal”, we are quick to correct our partner. And because people with Aspergers often lack tact, not only do we criticize our partners for stupid shit, we do it in a curt, and almost hurtful way. We have no cruel subtext in our statement. We are trying to help the person reach “our ideal”, but the other person, in this case, a neurotypical partner, inserts the connotation of maliciousness or cruelty into the interaction.
So no news is good news with people with Aspergers, especially women with such.
It makes me furious to find a spatula or can opener in the wrong drawer. I cook most of the meals when I am feeling well enough to. Therefore, there is a logical arrangement for cooking implements, and then there are the ways my husband and son arrange the kitchen when they put freshly washed dishes away. When I open a drawer, I quickly comment on something being in the wrong place, and I will often take an armful of implements and put them where I like for them to be before I can continue with what I’m doing. This hurts my husband’s feelings and makes him feel like I don’t think he’s capable of doing anything right.
My husband has told me on many many occasions that the way I treat him would look like abuse to an outside observer.
This distresses me to no end. I love my husband and I don’t want to hurt him. And I do hurt him, all the time, with my tantrums and the words I don’t mean and my silences and my sobbing. How hard it has to be to love me. He’s told me as much. He’s said on occasion that I don’t make it easy for others to love me.
Rudy Simone has come up with a way to help her remember not to criticize her partner constantly. She has a list on the refrigerator that reminds her not to criticize her husband’s cooking, cleaning, etc.
I like lists. I like rules. I forget to follow rules that aren’t in my face or so ingrained that they are second nature. I also forget to do things that don’t seem logical for me to do.
How simple is that list?
But I’m embarrassed to put a list like that up. I’m embarrassed to admit that even though I know that the little things I say as I’m trying to right the world around me to make myself feel better hurt the people I love because they have told me it hurts, I don’t realize that I’m doing it when I do it. It just happens. I’ve tried to shut my mouth and guard against saying critical things, but it still happens. I really believe I am just helping them do things better, more logically, more accurately. In no way at any time does the thought “you’re doing it WRONG” cross my mind. It’s more like, “that is not the best way, there is a better way and I am now going to tell you whether you want to know or not, regardless of whether my way is actually better or not, I am an improve-bot and I will perfect perfect perfect!”
One would think my home would be spotless.
I should mention that I use “we” simply because it is easier for demonstrative purposes, but that I am not formally diagnosed with Aspergers. I merely draw lines between the symptoms of the condition and my own list of traits.
The Art of Doing Good
My short-comings aside, I have always tried so so hard to be the best at everything I do. People who are close to me are going to cough and say, “Bullshit!” because I have failed left and right at life. For years I have quipped that my tombstone should read, “She meant well.”
And I do.
But doing well and meaning well are worlds apart, and I’ve never been able to traverse that continent. Sure, I’ve done charity, and sure, there are people who will tell you that I change their lives. There are people who will say that if it wasn’t for me, XYZ would have never been possible, and they thank me to this day. Hell, I’ve been a turning point for some people. I leave a mark.
But sometimes the mark I leave on people is a scar instead of a lucky golden lip-print.
I feel, and this may be inappropriate to say, but I feel like this whole Aspergers thing is like admitting I have a problem, and now I have to go through a big fat 12-stepper to take all the bad ruin in my wake and try to rebuild it in the light of, “Oh by the way, I’m sorry that these things ended our relationship, friendship, etc… turns out I’m on the Autism spectrum and I couldn’t help it because I didn’t know. Had I known, and had I had some support and some coping skills, I think we might not have parted ways the way we did. I just want to say that I’m sorry that I didn’t find out sooner, and I hope that this knowledge can bring you the kind of peace that it is now bringing me.”
If I am diagnosed with Aspergers, and if I feel compelled to have that conversation (which I really hope I won’t because I don’t like confrontation or talking about feeling with people), I will have to have it a thousand times over.
Maybe a form letter would suffice? An e-card?