Trigeminal Neuralgia – Officially an Underlying Diagnosis for MBHM

It has taken me a while to gather my thoughts enough to sit down and write this. I feel I should dive in and just say it, and then ramble about after. I also feel that just saying it here makes it final and real, and perhaps that is why I have been putting it off.

On November 3rd, my neurologist declared that given my pain history and my response to Oxcarbazepine, that Atypical Trigeminal Neuralgia (TN2) is an underlying cause for my Monster Migraine. The TN2 continually triggers migraine symptoms, and everything keeps cycling, and this is why nothing has been successful.

This diagnosis means a few things. First, it means that I have a reason for my pain. Second, it means that I have a community of sufferers to join and learn from. Third, it means that I have a disease that currently has no cure. Fourth, it means that there are new treatment options open to me that, if successful, may lead to a better quality of life than I am currently living.

And, lastly, it means that I have gone from hoping that my pain will one day end to realizing that my pain is something I will have to manage for the rest of my life.

That last thing has been difficult to process. I have cried. I have been angry. I have acted rashly, or hyper-rationally… or something. I have turned to treatment options I have previously refused because I saw them as too painful or too pointless. I began acupuncture this past Friday and am going to see my acupuncturist twice a week until I see some results. I am going to turn to outside-the-box pain medications.

I have launched my own, personal war on Trigeminal Neuralgia.

I have curled into a ball and hidden under blankets.

I have talked to friends.

I have avoided friends.

I have felt relief.

I started a secret self care group on Facebook for when I have feelings and I need some kind of support. I started writing in a journal. I started falling apart. I started getting my shit together.

I definitely started forgiving myself for some things.

I have a disease, and that makes my head hurt all of the time and fires up ye aulde migraine making machine constantly. Fuels it. Makes it glow red hot.

Cool. So there is that.

Advertisements

Self-Advocacy, Chronic Pain & Comorbid Chronic Depression

I’m not a doctor. I’m not a mental health professional. I’m one of 14.8 million (NIMH) people suffering from a major depressive disorder in the United States and one of 1.5 billion (American Academy of Pain Medicine) people suffering from chronic pain in the world.

As of this very moment, scientists don’t understand exactly why depression and chronic pain are linked, but the comorbidity of these conditions cannot be denied. Because these conditions are often both present in patients, one treatment strategy alone is often ineffective. To deny the mind and spirit when the body aches is like putting a band-aid on a broken arm and telling us to walk it off. However, many medical professionals are just learning that it is important to pay attention to the psychological effects of their patient’s conditions, and the reverse.

Photo: ALAMY

Therefore, I think it is important to have a conversation about what we, as patients, must do to advocate for ourselves. I discuss my doctors an therapists frequently and candidly because there is nothing shameful about being ill or mentally unhealthy. I also discuss them because removing the stigma will hopefully encourage others to seek much needed treatment even when it is not suggested by their general practitioners.

We tend to think of general practitioners as mechanics. They keep the body running and send us out to specialists to have our engines rebuilt when they themselves are not qualified to do so. What is lacking from general practitioners is a total-body approach to our healthcare. It is unfortunate that vision, dental, and mental health have been divided into separate fields. In fact, it is detrimental to those of us who suffer from chronic anything.

Think about the diagnostic process when something goes wrong with our bodies. General practitioners run through the check-lists of tests an procedures with which they are familiar and only then do they begin referring to specialists, eye doctors, and dental practitioners. Notice that I did not say mental healthcare providers in that sentence. They keep the body running, with little consideration for the mind. This is not to say that doctors don’t send their patients to psychiatrists and psychologists. However, when patients are sent, it is rare that the patient will then undergo in-depth counseling to determine root-cause issues. Typically, patients are sent with a list of symptoms they have discussed with their general practitioner, and the mental healthcare professional will prescribe something and manage psychoactive medication from that point.

This is extremely problematic. Although the chemical causes of depression may be treated, it is unlikely the patient will learn much needed coping skills to battle depression. Face it. We’re a society of instant-gratification loving people. We want pills to fix things. We want treatment to fix things. We don’t necessarily want to spend years in counseling learning how to be more functional emotional beings.

Which brings me to pain and depression. The road to diagnosis with chronic pain is a long, long, long, long road full of bumps and monsters and disaster. This process is harmful to the psyche. Between doctors who don’t know, doctors who don’t care, and doctors who mistreat chronic sufferers… patients develop an adverse reaction to the medical profession as a whole. We don’t trust that doctors know what they are doing. We feel like lab rats. And we feel jerked around. To feel pain and to not feel heard is dehumanizing.

Sure, it’s pretty obvious that hurting all the time would lead to depression. But it’s more than just feeling down about limitations. It’s a chemical process that begins to form a feedback loop in the body from which we cannot escape. When doctors don’t identify that this feedback loops is occurring, the only result is a worsening of symptoms.

As chronic pain and chronic depression persist untreated, they worsen. It’s inevitable. So what can we as patients and we as sufferers do for ourselves?

It’s simple… talk and take action.

Research symptoms. Prepare for your appointments. Consider mood as well as physical symptoms. Think of yourself as one whole being and force your doctor to see you as such. Ask questions about side-effects of medications. Talk about sadness, anxiety, crying, feeling alone or trapped with your doctors. Seek out mental healthcare and make sure that all of your healthcare providers are talking to one another. Treat your body and mind as two parts of one machine and get total-body care. Don’t wait for your doctor to tell you what to do. Do it and tell your doctor.

You are one body, mind, and spirit. These three things work in harmony to keep you going every day. I charge you with the care and maintenance of your total body. Demand that your doctor treat you the same way, and if they won’t, find a doctor who will. It is okay to seek proper treatment and it is okay to take your healthcare into your own hands. You are not at the mercy of the medical community. You are completely in charge of your treatment and you deserve the best they can offer.

But they don’t always offer, and you need to be aware of that.

Photo: ALAMY

Positivity is the New “Now What?”

I have a blemish on the back of my hand and it’s driving me bonkers. It’s right there, on my right hand, looking right at me.

*sigh*

What am I thankful for? My family, by whom I mean my husband and my son. Other people are relatives and the circumstances of my life have kept them at a distance. I am trying to let those people back into my life, but, for the purpose of this blog entry… my family consists of one husband, one son, one good dog and one horrible dog. I am thankful that my husband kisses me every day before he leaves for work and I am thankful that my son kisses me most days be for he leaves for school when he remembers. I am thankful that both of them are doing the things that I cannot do because my head hurts, and I am thankful for the sacrifices they make daily to help me be comfortable. I am thankful for our home. I am thankful for music. I am thankful for my relatives who are trying to be a part of my life. I am thankful for my doctors who are trying to help me be better. I am thankful for my company and my benefits and that although my career is marred by my extended absence, they are taking care of me in that special, sterile corporate way. I am thankful for the way my husband feels against my face when I hug him and how he smells. I am thankful for my son’s ability to be silly even when he’s completely and entirely doomed. I’m thankful for the way my husband’s dog looks at me and prances when he’s excited. I’m thankful for the way my awful little dog sleeps on my belly, or under the covers, or anywhere he damned well pleases. I’m thankful for my mother who did the best she could to make me and my life look normal to anyone outside looking in. I am thankful for my dad who taught me how to use computers when I was little and with whom I share my love for Stephen King.  I am thankful for my step-father who is taking care of my mother while she’s going through chemotherapy, and his sister and her family for helping out when I can’t be there. I am thankful for my aunt who has always tried to be close to me but has never managed to because no one gets close to me. I am thankful for the school counselor who told my mother that I would not have friends until I reached college because she gave me this big goal to work towards all my life. I am thankful for my high school AP English teacher who told me that I write well. I am thankful for the few people, and they know who they are, that I can call and it’s just like old times. I am thankful for my husband’s ability to make me laugh when I am sad. I am thankful for the wonderful way in which my son sees everything and how excited life makes him and that he has never been abused, and that he believes deep down that he is special. I am thankful for books, and bathrooms, and the internet. I am thankful for my unwavering belief in God. I am thankful for having what I need when I need it.

It’s a rough day. My head is at a solid 9.5. I needed to talk about good things. When you hurt all the time, and you feel the people around you hurting emotionally, it takes extra special effort to to act “okay.” My house feels like a stew of sadness and has for weeks. Monster Migraine is ripping everyone apart differently.

I thought that an Asperger’s Syndrome diagnosis would unlock the secrets of the universe somehow and the path to making my head stop hurting would be revealed. Not as such. Not yet.

I told my husband I feel like I should make a brochure to hand to people so they’d understand how I work. I’m reading The Complete Guide to Asperger’s Syndrome by Anthony Attwood, and in the book Attwood actually mentions making a brochure or a business card with an explanation of Asperger’s on it.

I was kidding. I don’t think Attwood was.

But, seriously, now what? I want to tell my parents and my aunt and uncle and my sister. I’ve learned and changed and adapted my entire life, and it’s really important to me that someone understand where I’m coming from for a change.

I don’t think I want to be “out.” I’ve gotten this far in life. I’m practically charming. I fake it until I make it and all that jazz. Does it make me question my career choices? Absolutely. Does it make me look back at friendships and see how things could have ended differently, or better yet, not ended at all? Definitely. Do I feel any different with an official diagnosis.

No.

I still just feel like me. Right now the me I feel like feels pretty damned crummy. So I shall have a bath and put on fresh pajamas and think about what to have for dinner and just deal with it like I do. I try to put on a good show of being normal. No one wants to be around a girl in absolute agony. She’s just not cute.

Survey Says…?

“You’re an adult living with Asperger’s.”

Or at least that’s what Dr. B. says. He told me that when I walked into his office two weeks ago and talked about some quiz I had taken on the internet that his bullshit-sensor was on high alert. He said that Asperger’s is trendy and overdiagnosed, and that so many parents bring their kids in looking for some kind of fancy diagnosis when it’s really just shyness.

I wasn’t  shy kid until I hit puberty. I just didn’t have any friends because I was odd.

So there it is. I didn’t have to take a test or anything. He sort of surprised me with it at the end of our session today. Earlier in the session he asked me why I was seeking a diagnosis and I listed these things:

– I’ve read that there might be tie-ins with migraines and skin sensitivity so a diagnosis could affect the way my Status Migrainosis is being treated

– I’ve felt like a failure all my life because I can’t maintain friendships and connect with people, and there are just some things I”m not good at, and I can’t at all let myself fail at something without beating myself up. But having a diagnosis is like giving myself the freedom to be bad at some things and good at other things, so I can focus on my strengths and try to turn my weak areas into places of growth rather than self-punishment. It’s like having a name for the monster makes the monster more tolerable somehow

– I’m hyper-critical of my family, especially my husband. Everyone does things wrong, they change channels wrong, they wash dishes wrong, they put groceries and dishes away wrong they drive wrong they stand wrong they breath wrong… and I can’t seem to keep my damned mouth shut about it. I’d really like to understand WHY I do that and find better ways to fix it. Knowing that I do it doesn’t help… because I don’t realize I’ve said something that has hurt someone’s feelings until they have snapped at me. And sometimes I don’t even understand that they are upset with me

– I’m possessed. Or at least sometimes it feels like I am possessed. I say and do things when I am emotionally agitated that I don’t mean and sometimes don’t remember and all it does is make other people get angry an say things they don’t mean right back at me, which in turn just makes me terrified and suddenly I want to run away and cover up and sleep and rock and hide. There has to be a better way for everyone in my household to get along

I never said I wanted to be diagnosed with Asperger’s, I just said that from what I’ve read it’s the closest thing to what seems to go on with me in my life. I wasn’t looking for an Asperger’s diagnosis, I was looking for help and I needed someone to see past the depression and anxiety, someone to look for more of a root cause.

I feel really comfortable with Dr. B. I’m going to continue seeing him for now. I don’t know how I feel about anything at the moment. On one hand I feel like I should write something and send it to my family, on the other I feel I should wait and talk to my husband and my son and see if there’s stuff we can learn together to make our family healthier emotionally.

Seeking a Friend for the End of the World

Tomorrow I talk to a Psychologist about whether or not I will find a place on the Autism spectrum. I’m anxious. I told my husband I can go alone. Him working is more important than me feeling comfortable. I’ve already planned out pain medication so that hopefully my head will stay ate my baseline pain level so driving is kosher.

I am such the worry wort. I worry about driving somewhere new. I worry about what to wear. I worry about not being taken seriously. I worry about my head hurting. I worry about crying and not being able to say the things I need to say to explain why I’m there.

I see Dr. Ham about my head (the inside, brainy part) on Thursday. I’m comfy with that entire situation.

 

I often fantasize about having a friend who doesn’t need conversation, loves me unconditionally, and will just hang out in the same room with me. My husband can’t be the only person with whom I interact.

Let’s Get Together, YEAH YEAH YEAH

This weekend I visited my mental health care insurance provider’s website to obtain a list of Psychologists and Psychiatrists who specialize in Autism Spectrum Disorders (ASD). Asperger’s is under the umbrella of Autism, but the diagnosis “Asperger’s Syndrome” is being replaced  by ASD in the fifth edition American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM-5) due for publication in May of this year.

This morning I called my mental health care insurance provider for information on how coverage works, what is actually covered, and whether I would need pre-authorization for testing. Here’s what I learned today from “Awkward Customer Service Representative”:

  • -The diagnosis of Asperger’s, or ASD, is not covered under my health insurance, so any associated symptom or treatment is not covered
  • -However, anxiety, stress, and depression disorders are covered under my health insurance at a with a co-pay once my individual and family deductible are met.
  • -Therefore, an ethical mental healthcare provider would have to properly diagnose me and could not just “flub paperwork” so I am still covered, but depression and anxiety issues could be diagnosed and treated as separate conditions and ultimately my provider should advocate me
  • -Testing for ASD must be pre-authorized, is only covered up to two hours per individual per ailment, and must be a medical necessity
  • -Educational testing (IQ tests, etc) is not covered by my insurance
  • -After an initial consult the doctor will submit a request for testing to my insurance company and, once authorized proceed from there
  • -The doctor will assign me both a DSM-4 (5 in May) code and CPT Code
  • -Applied Behavioural Analysis, typically used for low-functioning autism patients and involving thousands of hours of observation, is not covered
  • -Thanks to Obamacare, if I have an ASD diagnosis it is considered a pre-existing condition, however my insurance company cannot drop my coverage and in most states I cannot be denied coverage
  • -I was advised to review my state’s laws on insurance coverage and treatment of ASD so that I understand what benefits or deficits a diagnosis could cause in my long-term healthcare option

All in all, a very informative phone call that cleared up speculative information I’ve read over at Wrong Planet , an online resource/community for Autism and Asperger’s.

Unfortunately, when “Awkward Customer Service Representative” began searching for facilities that would provide testing for me, and also my son, and potentially my husband (hey, when in doubt, psychoanalyze it out!) he could only come up with child and adolescent care centers.

I said, “I am looking at your website right now at a number of practices that list Autism as a condition they are qualified to treat.”

He said, “Oh, well, just because they treat Autism doesn’t mean they test for it.”

I said, “Ah. May I have the names and numbers and words I should say to make sure I get an in-network provider?”

Then I contacted one of the numbers on his list, and was told it was the wrong number, and that it was a children’s psychiatric practice.

I promptly went back to my own damned list.

The first family practice I called that listed doctors with ASD experience stated that their doctor who had  previously done testing was no longer with the practice, but they recommended me to another family practice that they thought might be able to help me.

Upon contacting that practice I was greeted with a very terse woman who didn’t seem helpful at all:

Her: “So and So Family Psychiatry…”

Me: “Hello, ABC Family Practice gave me your name as a possible place where I and my son could be screened for Autism/Aspergers and I would like to find out if you are in my insurance network.”

Her: “What kind of insurance do you have?”

Me: “Awesome Options Insurance.”

Her: “And what kind of screening do you need?”

Me: “Autism/Asperger’s.”

Her: “Umm… let me see. I don’t know!”

Me: *wait wait wait* *wait wait wait*

Her: “We have one psychologist who handles Autism and he is in your network.”

Me: *wait wait wait* *wait wait wait*

Me: *wait wait wait* *wait wait wait*

Her:  His name is Dr. B.

Me: *wait wait wait* *wait wait wait*

Me: *wait wait wait* *wait wait wait*

Me: “And… does Dr. B have any openings for new patient consultations?”

Her: “Yes.”

Me: “I’d like to schedule an appointment.”

Her: “Okay, when?”

Me: “When does he have appointments available?”

Her: “I don’t know what works with your schedule.”

Me: “I know my schedule and you know his, may I have a list of dates and times?”

Her: *rattles off dates and times starting with at least three openings tomorrow*

Me: “I will take the 12:30 tomorrow, thank you.”

Her: “Arrive 15 minutes early to complete the paperwork.”

Me: “I am on your website, is this all of the paperwork I need? I can bring it with me when I come.”

Her: “If you bring the paperwork with you you don’t have to arrive early.”

Me: “…okay?”

Her: “See you tomorrow at 12:15 or 30.”

Me: “Thank you!”
I’m pretty sure that I wasn’t the one with a communication issue in that conversation.

Infusions, Botox, Aspergers, Self-Discovery, and the Art of Doing Good

Infusions

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.

Botox

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.

Aspergers

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.

Self-Discovery

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.

Nope.

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?

Radio Medicine

My husband and I just took  this test.  He was neurotypical… and I… might need to be screened for Aspergers. Interesting.

My 13 year old also took the test, but my husband and I were joking the entire time, and I am still in shock. I’m not sure that my son’s neurotypical score is accurate. I am not neurotypical.

Here are my results:

Aspie Quiz Result

My Asperger Quiz Autism Spectrum Chart Thingy-Mabobber

Your Aspie score: 156 of 200

Your neurotypical (non-autistic) score: 52 of 200

You are very likely an Aspie.

If you’d like to read my full results and detailed explanations of each of the categories above, click the link below for a PDF of this information.

Detailed Aspie Quiz Results

I have some friends on another website who have Aspergers and, thank goodness, one of them immediately jumped in and helped me see how this isn’t a bad thing. (Thank you to the lovely A..)

I’m still processing.

Nope, Still Bitchy

This is a pretty bitchy blog entry. I just paid a huge stack of medical bills, made payment arrangements for what I couldn’t pay, and checked on bills which didn’t have insurance applied but should have had insurance applied.On the agenda for the weekend:- Today, I will be torturing the child by making him clean in preparation for his birthday party tomorrow
– Tomorrow, there will be a surplus of moody 12 and 13 year old children in my home playing video games and eating food and then some are sleeping over
– Sunday, I will be recovering from all of the noiseThis last batch of infusions reduced my pain a bit, but today I’m super dizzy and nauseous. I have more infusions again starting on the 6th, right after another Botox treatment.

The lovely Dr. H. said, “We are limited by having to be reasonable.”

“We are limited by having to be reasonable.”

That is both beautiful and tragic. I have a feeling the woman would love to just load me up with a ton of chemicals and see what happens. She feels so bad for me.

The Jefferson Clinic called. My appointment is on July 17th. I have to have a psych evaluation there in addition to meeting with the neurologist. I think my appointment is at 11:45. I don’t recall. It’s a Wednesday, I believe. I could look at a calendar. They are sending me a packet. They said the appointment will last four hours.

Golly I hope that I am “healed” well before July. I lose my job on August 6th if I am not better. I have made it half way through the bajillion pages of my long term disability application. Luckily my short term disability supplier will send their records to my long term supplier so I don’t have to go through the nightmare of trying to obtain records from my doctors again.

It’s been a rough road.

I think the worst part is that my head still hurts, and every time I get a treatment I feel like a failure if it doesn’t work. I feel like I have personally let my family down, along with everyone else. People care and ask how I am, and I immediately feel awful for not being able to tell them that I am, ” just dandy, thanks!”

I don’t feel comfortable unloading on any one person, but then I’ve never been good at talking about feelings in any rational or coherent way.

It hurts when people ask me how I am, and then seem put off by the fact that I’m not better yet. They don’t do it in any obvious way, but the conversation becomes stilted. I can converse about any number of topics. I avoid talking about my condition with friends unless they specifically ask or have been involved in this whole process in some way. So it really stinks when friends who used to text me all the time or work with me send me a message and the conversation goes like this:

FRIEND: Hey! Haven’t heard from you in a while. How are you doing? All better now?
ME: Hi there! Nah, same as I have been. But I’m hanging in there! It’s so nice to hear from you. How is that thing you were doing with that thing?
FRIEND: Oh, I thought you’d be all fixed now. Sorry you’re going through this.
ME: It’s fine. Sometimes things happen to people. Anyway, what about that thing? I’m excited to hear all about your trip to that place!
FRIEND: It must be really awful to be in all that pain. I can’t imagine. I’d be so depressed.
ME: Life is what you make of it, you know? How was your trip?
FRIEND: Well let me know if you need anything. Keep me updated on everything.
ME: No problem. So how are YOU?
FRIEND: I’m good. Really busy though. Catch up with you some other time?
ME: Sure. Take care.

Here’s the problem I have with conversations like that: obviously I’m trying to be upbeat and minimize my broken head. I am not defined by my broken head. I am not my broken head. My broken head is something that is happening to me that is awful, but it’s not my fault and I can’t make it just go away. I deal with it every day. It’s just what my life is like right now. I’m not happy about it but I had to make up my mind that crying about it every day wasn’t going to cure me any faster. So let me be positive and tell me about the good things happening with you! Please?

I am not my broken head.

Keep you updated? Okay, I will add that to my to do list. You just told me you are too busy to have a pleasant conversation with me about YOU, and yet you want me to remind myself to tell you all the bad shit that is happening with me? You just brushed me off because you aren’t comfortable talking to a sick person. That JUST happened, and you want me to update you? Really? No. No. If you want to know how I am, pick up the phone, buddy. You aren’t my immediate family or taking me to treatments or caring for my kid on the weekends or holding my hand in any way through this process, so I am not going to give you the bullet points unless you ask.

Here’s the T and nothing but the T so help me whomever- I’m miserable and worried sick and losing my mind being at home all the time without being able to do anything. I am overjoyed to receive texts, phone calls, e-mails, anything… because I don’t see people on a regular basis. When I do see people I’m so drugged out of my mind on painkillers just to be able to deal with normal things like the grocery store or, heaven forbid, a restaurant, that I don’t know what I’m saying. It literally hurts to be touched, in bright light, or in any kind of loud place. I can’t drive at night. I have to wear these huge goofy sunglasses everywhere. It is horrible. All of it. I miss people and my job.

But that doesn’t mean I want to talk about it all of the goddamned time. Does it occur to these people that maybe I need distractions? My sanity is supported by nothing but distractions. Writing? Distraction. Ukulele? Distraction. Podcasts? Distraction. Documenting my insane medical whatever? Distraction. Listening to television shows and sneaking peeks at them when the sound just doesn’t tell me what’s going on? Distraction.

Blah. I don’t even know what I’m talking about anymore. I have to find something to eat that I don’t mind possibly throwing up in half an hour and then try to rest a bit before I start ordering the boychild about.

You Have to Use Silver Bullets!

It’s Monster Migraine of 2012 update time, kids!

  • The lovely Dr. H. was wearing sexy boots this morning. This made me view her as something of a Dr. Van Helsing, on a mission to slay my evil Monster Migraine
  • Last week’s VPA (Valproic Acid or Depakote) Infusion did not work, so next up? STEROIDS! I’m getting a big fat steroid infusion that will make me crazy. Doc said that one of her patients who gets them regularly took all of her clothes off and ran naked through a golf course. Excitement!
  • When the hell did Midrin come back on the market? Um, yes, of course I’ll switch out my current crappy pain meds for that. K thanks
  • The whole needles in my eye thing (Optic Nerve Block) has been completely taken off the table
  • My diagnosis has been changed from a form of chronic migraines to status migrainosus which essentially means “Monster Migraine that can’t be killed by normal means” (what have I been telling you, silly doctors? You have to use silver bullets!)
  • My headache specialist is referring me to the Jefferson Headache Center and made mention of putting me into a medically induced coma to “reboot” my brain. I thought shit was real before. But shit just got for real for real
  • For real
  • All in all, my doctor spent a long time with me discussing side effects and reading over success ratios from trial results and being very frank about where we are. Where we are is heading towards my fifth opinion

Wednesday Morning Update

My sister was just finishing her night shift in the Tranny Care Unit this morning so I got good sister hugs and all of the immediate hospital staff were sweet to me because I was “B.’s Baby Sister.”

She made sure I got the same nurse as last week so I wouldn’t have any problems, but boy, oh, boy did I have problems today!

  • The blood pressure machine couldn’t get a read on me and squeezed both arms to death
  • My nurse couldn’t get IVs to thread in my veins today. The tried both arms and my left hand
  • Finally the nurses brought in Carl “The Vein Raper” McHottie who confidently asked, “Ma’am, which arm would you prefer I start your IV in?” I responded by saying, “Left arm, corner pocket.” Carl said, “8 ball or 9 ball?” My husband said, “You’ve exhausted her knowledge of billiards.”
  • Carl got my IV to take in my left forearm, got my meds, went to sleep. Now another wait begins

Choose Your Own Botox Adventure!

I have good news and I have bad news. Let’s make this like a “Choose Your Own Adventure”.

To enter The Cave of Time and read Good News, read the green paragraph below:

All of the crazy extra pain from the Botox is finally over! YAY! My doctor, who is just so incredibly sweet, was optimistic on the phone about some of the changes to the pain I experience on the right side of my body. 

 

To avoid The Cave of Time and find out the bad news about Who Killed Harlowe Thrombey, read the red text below:

The Botox treatment didn’t stop the pain. That doesn’t mean it won’t, it just means that seven days is the minimum amount of time it takes to start working typically, and it may still work. I’m also up to 200 mg of Topamax daily so that could wear things down as well. 

It does not help that there is a hurricane headed for the East coast, which causes barometric pressure changes… which in turn fucks with my head and causes severe nausea. 

My doctor wants to wait three weeks before we move on to our next option. She doesn’t want to pile on treatment after treatment in case something starts working. If something starts working and I’m on a million medications, we won’t know which on is working so we won’t be able to stop any of them. 

To skip the good news AND the bad news and just get on with the vain news, read the blue text below:

A fun side effect of the Botox is that I look different, and I’m kinda sorta devastated. Facial symmetry is a big deal to me, I already have a mole that I have learned to love over the years, and now my eyebrows have dropped. Yeah yeah yeah, this is an entirely superficial thing to be upset about but it’s my face. I’ve already taken a hit to my self esteem because I don’t feel well enough to put my best face forward all the time. I’m already living in pajamas most of the time. This whole thing has completely stripped my life away and probably ruined my career… and now a treatment that seems less and less likely to be effective (at the moment I am trying to stay positive I promise, I am… but let me have my whiny moment and then I’ll go back to knowing that there are starving children and people with cancer and AIDS and UFOs and such) has made me look weird and ugly to myself. 

My husband still says he doesn’t notice a difference and gets annoyed every time I try to bring it up, but when I look in the mirror I don’t like the face I see. I put on makeup for the first time since the treatment today and I had to hold up my eyebrows so I could put eyeshadow on… and I had to do my makeup completely differently. I’ve had my face for 32 years. And now it’s not quite right. It’s really making me anxious. 

I hate having irrational emotional responses to things.