I’m sorry, we’re all out of good answers

Or at least, that’s what this week has felt like.

I had three appointments this week: one with my GI for new symptoms, one with a rheumatologist for a collection of new symptoms I mentioned in a previous post, and one with the headache center because my headaches are getting worse and I’m willing to try a preventative again.  All three appointments concluded in ways that I have to admit I’m far from thrilled with.

My new GI symptoms were lower GI bleeding and increased GI pain.  Now, I’ve been diagnosed with IBS, so I’m used to a certain level of GI pain, but it’s usually because of spasms and I have medication to treat that.  This pain doesn’t respond to those pills, and GI bleeding is always a concerning symptom.  There are two basic possibilities when you’re dealing with lower GI bleeding: hemmorrhoids and inflammatory disorders.  While hemmorhoids are a vile thing to consider, they would definitely be the lesser evil here.  One or two treatments could get rid of them, and while there’s a chance of recurrence, it’s not a huge lifetime thing.  Inflammatory disorders are a whole other boat.  Both Inflammatory Bowel Disorder and Crohn’s Syndrome are auto-immune issues, which means that your own immune system is attacking your GI.  We’re talking medication probably for life and the possibility of major surgeries to remove parts of the GI system that get too badly damaged.  Not pretty.  Both are currently on the table, and will remain that way until I get a sigmoidoscopy done next month.  I’m sure you can imagine, with GI pain, how much I want to have a camera shoved up my derriere.  Especially since the last time, I ended up in the ER a few days later with one of the few episodes 10 out of 10 pain I’ve ever had.  Ugh.

The rheumatologist appointment wasn’t a whole lot better.  I’ve seen this rheumatologist before; in the summer of 2008, he was the first doctor who suggested I had Ehlers-Danlos Syndrome.  He struck me as a kind man and a good diagnostician, so when I needed to see a rheumatologist, I asked for him by name.  We talked about symptoms, and he could see the swelling in my wrists even if he couldn’t see it in my fingers (because I have exceptionally slender fingers, they look about normal when swollen).  I didn’t like his answers, either.  He said that there were a couple of possibilities that sprang to mind.  Because of the GI symptoms under investigation, he said that I could have Inflammatory Bowel Disorder or Crohn’s, which can cause generalized arthritis-like inflammation.  I could also have a sero-negative rheumatological disorder like rheumatoid arthritis or Sjogren’s; the main confirmation for either of those would be a negative diagnosis for bowel issues and a positive reaction to medications that treat them.  In any case, he suspects something I’ll be dealing with for the rest of my life.  Joy.

And finally, on to the headache specialist.  I stopped seeing them a year ago because I tried two different preventative medications and reacted badly to both – sleeping 16-18 hours a day, having trouble doing simple things like feeding myself because I’d get sidetracked somewhere in the process (usually after putting food into the microwave).  Thing is, the headaches have gotten worse again.  I’m now having positional headaches, which scares the crap out of me because I know that can be a sign of Chiari, which is way more common in EDSers than in the general population.  It can also be a sign that the cervical settling I was diagnosed with a bit over 2 years ago is causing problems.  Well, the headache specialist threw in a new possibility – he said I could have pockets of cerebro-spinal fluid developing in my brain, which apparently is also more common with EDSers than the general population.  Aw fuck.  If that’s the case, they have to go in and patch them because they can cause brain damage if left unchecked.  Gah.  Because of this possibility, I have to have a MRI done, with and without contrast.  That’s pretty much torture to me.  I’m mildly claustrophobic, and having my head bound in place and then being slid into a tube that barely has enough room to fit me is pretty horrific.  Worse yet, to do a with-and-without contrast, they have to do one set of scans, bring you back out so they can inject you with contrast, and then put you back in.  It is one thing to deal with being put in once; something about being pulled out and put back in heightens the sensation of being trapped enormously for me.  And of course, for an MRI, you have to stay perfectly still.

They also are having a little trouble with preventatives because of my other conditions.  Migraine preventatives tend to be drugs that were originally intended for other uses that were discovered to have headache-preventing qualities.  They fall into 3 major groups: anti-depressants, anti-seizure meds, and blood pressure meds.  They don’t want to give me an anti-depressant because I’m bipolar.  I’ve reacted badly to 3 anti-seizure meds, so we don’t want to try that route again – no sense beating a dead horse.  Which leaves blood pressure meds…which have the potential of making my POTS worse.  I guess that’s less scary than messing with things that can affect bipolarism because I have a better chance of catching POTS symptoms before something bad happens, not to mention that the gap between theraputic for headaches and theraputic for the original use is wider for blood pressure meds.  That is to say, the level of anti-depressants needed to prevent migraines is closer to the level needed to treat depression than the level of blood pressure meds to prevent migraines is to the level needed to treat high blood pressure.  The really bad news is that they think the main medication I’m on to manage my generalized body pain may be making my headaches worse.  They want me to think about coming off of it.  The idea of coming off of the medication that makes the pain that encompasses my whole body tolerable is enough to make me want to scream.  I have to sit here and try to figure out which is worse: the possibility that my headaches will continue to get worse, or what it will feel like to come off the medication.  Pain is a funny thing; being on opioids is known to make pain worse in some people, so it might not be as bad as I think.  Except I remember what it was like before I got on the opioid medication.  I spent all of my time either at school, doing homework, or asleep, because being awake was too damn painful.  I don’t want to go back to that – it’s a frightening possibility.

Which is to say, this week was full of catostrophic SUCK.  I got answers I didn’t want at every turn.  It sucks up your energy, dealing with stuff like this, as if I didn’t have all kinds of other things eating up my energy.  I’m exhausted and sad and frustrated and angry, and feeling very vulnerable right now.  I feel like I am walking on thin ice, and anything could send me plummeting into the deadly cold water beneath.

In some different news, I am not the only person who has been dealing with sucky stuff lately.  A friend of a friend has had a crisis happen where she cannot get the treatment she needs to be as healthy and well as she can be.  My friend, Sharon of aftergadget.wordpress.com, organized an auction to help out.  There are a variety of things included in the auction, from artwork to services.  Please check the auction out at http://heathersauction.blogspot.com/!

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More fucked up than thou

I have to start this by saying that it has been about a decade since my sister and I could stand each other.

Things are the way they are between us for a lot of reasons. 

My father was a terrific father to small children, but when his children started forming their own opinions and disagreeing with him, even rebelling (very mildly in my case; rather extremely in hers), he couldn’t take it.  He was an angry control freak, and he did not respect us as people.  It feels very sordid to put this in writing.  You have to understand, I love my father and he and I get along reasonably well now – now that I am 27, have two college degrees and am about 2/3 of the way to a third, and have not lived in his house for most of the last decade.  It has taken a lot of work and fighting to get to this point, and I sincerely believe it would not have been possible if I had not moved out as young as I did.  Three years ago, he and I had a serious fight in which I told him that if a man I was dating treated me the way he treats me, I would call it abuse and tell him not to let the door hit his ass on the way out.

My sister has not been so lucky.  Her bipolar may be worse than mine; it is without a doubt more poorly managed.  She has anxiety issues and may also have borderline personality disorder – she has been diagnosed with it by one psych, and I personally believe it accurately describes her.  She also has an eating disorder that flares on and off.  She barely finished high school and spent the year and a half after high school utterly fucked up on drugs, alcohol, and mutually abusive relationships.  She enrolled and failed to finish multiple semesters at the community college, which only added to my father’s lack of respect for her.  I have always been the practical one, the one whose expectations are at least more-or-less based on reality.  My sister has not had long periods of not living with my parents.  She had an apartment for a while, but it was only a few miles away and she came over weekly to do her laundry (or to be more precise, to have my mother do her laundry).  A little over 3 years ago, she got pregnant and decided to keep the baby.  She didn’t bond with my nephew when he was born, though in the last year she has become much more involved.  However, she really isn’t capable of being a single parent, so she is effectively trapped in my parents’ house because she needs the help.  She told me years ago that she resented me for leaving when I did, abandoning her with our father; it certainly explains a lot of her behavior towards me.

I say all this not to exonerate her, but to explain the situation I find myself in.

You see, my mother’s life largely revolves around trying to keep my sister from harming herself.  My father and my sister have terrible fights, like he and I had for years before I left for college.  My sister’s mental health has been poorly managed since she developed bipolarism, we think at around age 12, the same age as me.  She has only had one good therapy relationship, and has disliked the way she feels on medication strongly enough to mostly be off of them.  She swings suicidal unpredictably.

My mother is the only buffer between my father and my sister.  They are dysfunctional in ways that are directly at odds with each other, and there is a constant tension and anger in this house.  She also gets dragged into fights between my sister and I, usually because my sister tells her how angry she is over something I said or did.

My parents don’t really understand how severe my bipolar is, for a lot of reasons.  I’m a more private person than my sister – it may seem hard to believe, since you read this blog and I write all kinds of deeply personal things here, but I haven’t ever been very open about my emotional state with my parents.  As messed up as my relationship with them has been at times, I have always wanted to be someone they would be proud of.  I live farther away, and have for a long time, so they don’t see the days I don’t manage to get out of bed or the projects that don’t get finished or the crying jags or the times I get suicidal.  I’m far more self-reliant than my sister is, and I make shit work until I can’t.  I also have a better network of friends, who I rely on in times of need instead of asking for help from my family; her friends have historically been users.  My bipolar looks different than hers – hers is more obvious, violent lunges in one direction or the other, where mine sneaks up on me until the whole world is gray or so bright I can hardly bear it.

I’m writing about this because I made my mother cry today.

My sister and I clashed pretty badly last night, and I told my mother about it today because for once, I didn’t want to be the bad guy.  I’m always the bad guy.  I’m always supposed to be on eggshells around my sister, and if she gets hurt or angry about something I said, it’s my fault.  And even though, for once, I was the one who talked to our mother first, I was the bad guy again.  Even though my sister presented some pretty damn fucked up opinions, which included an opinion that (among others) people with disabilities (later refined to ‘people who don’t contribute’) should be killed to ease world overpopulation, it was my fault that we clashed because I told her that what she was saying was fucked up and I insisted in a slightly later part of the discussion that science has not proven causation between weight and the amount/quality of food a person ingests.*  And furthermore, that dieting is more dangerous to a person’s health than being overweight.

Why is it my fault?  Because I’m supposed to be less fucked up and therefore more is expected of me.

Perhaps the most fucked up part of this is that more being expected of me is what led me to attempt to kill myself when I was 15.  I couldn’t bear the fact that I was constantly disappointing people, failing to meet expectations, and I really believed that people would be happier without me.  Then, it was more expected of me academically, because I was so damn gifted.  Since then, it’s become more expected of me in terms of work and relationships because supposedly I’m less fucked up emotionally.  Because yeah, putting that weight on me again is going to be a healthy thing.

*No, this is not an invitation to debate this point.  There are studies, which I am not in the mood to dig up right now, that point this out.

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When you speak of crazy, you speak of me.

I have had words with the director of the legal department I work in about using the word ‘crazy’.  It was a pretty fruitless discussion, to be honest.  I didn’t self-identify myself as crazy to her; I’m probably more in the closet about that than I am about the fact that I am attracted to more than just men*, and even THAT I almost never discuss with anyone I’ll see face to face.  It’s all information I’ve had people use in ways that made me profoundly uncomfortable.

Well, this week it suddenly got worse.  We were looking at custody cases, and in multiple cases my professor referred to people doing ‘crazy’ or ‘insane’ things.  In none of the cases were there actual references to mental health issues – it was all things where the professor could have subsituted ‘absurd’ or ‘ridiculous’ and managed to express an almost identical concept.

Look, when you speak of crazy, you speak of people like me.  People who live with mental illness.  People who do occasionally do irrational things, or lose touch with reality.

That doesn’t make us people who try to cut off our child’s relationship with our former partner, who is their second mother.  Nor does it make us people who donate our sperm and stay in the picture with time, gifts, money, etc, and then get shocked when they end up on the hook for child support.  It doesn’t make us women who lie, cheat, get artificially inseminated with the sperm of the person they were having an affair with even though the affair ended two years before the insemination, lie to the doctor involved, and try to nail the sperm donor 5 years later for child support even though they’d had no contact since the child’s birth.

Now, don’t get me wrong, some or all of these people may have mental illness.  But if you don’t have a reason like a psychologist’s testimony, don’t go attributing people doing rotten and absurd things to each other to crazy.

I’m crazy.  I have bipolar disorder and PTSD.  I live with swings through depression and mania, occasional episodes of paranoia, and trouble with people getting too close to me physically.  I have, on a few rare occasions, hit someone because I was triggered by something they did, and I was so afraid that I needed them to get away from me IMMEDIATELY.

That doesn’t make me into someone who hurts others because they can.  It doesn’t make me someone who is willing to inflict emotional harm on a child because I don’t like someone they care about.  I am not them.

But I am crazy.

* I say ‘more than just men’ here because bisexual is a really, really problematic word.  It’s cissexist and binarist, and doesn’t recognize that there are a lot more varieties of gender than ‘male’ and ‘female’.  I personally know people who ID as queer, agendered, and bigendered, who would be made invisible by the term bisexual.  I prefer heteroflexible, but even that is problematic because it still has that binarist issue.

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Sliding sideways

I know I mostly talk about my physical illnesses/disabilities, but they aren’t the only ones I deal with. I am bipolar type II, though I flirt with type I when under pressure. I also have a bit of OCD – enough for it to be mildly disruptive and entirely annoying to people around me. I have PTSD (relatively mild) and occasionally have panic attacks. I’m also a pathological planner/worrier.

Now, the OCD is for the most part pretty managable and it springs from things that are originally reasonable. For example, because of the fibromyalgia and sensitive skin, I’m extremely sensitive to folds, seams, tags, fabric softener, quality of fabric, and so on. However, this turns into an obsession with the sheets being pulled so that there are no wrinkles. A desire to have my clothing folded JUST SO. Disliking having shoes or socks on. Extreme particularism about how the laundry is done. The list goes on and on. Fortunately, my boyfriend is an exceptionally tolerant, patient person, and he rarely gets ruffled by this…twitch…of mine. I think the fact that he has an office that I never even look at, and thus a place he can do whatever he wants, probably helps with the balance of things.

Day to day, the OCD is a nuisance but not really hard to work with. It just kind of…is. It dictates a lot about the details of how things are done, but of all the things about me that require coping skills, it’s a relatively mild one (except the occasional night where I keep having to check that the doors are locked…those are very rough on my joints as I go up and down the stairs again and again and again). Yeah, once in a while the boyfriend and I end up snapping at each other over it, but on the whole, it doesn’t change our lives much.

I would not be surprised if my need to plan things and figure out what happens IF (fill in the blank) are OCD behaviors. It’s definitely compulsive, and something I am absolutely incapable of stopping. I can sometimes…manage…it, but usually the best option is to give in, sit down and do the planning/worrying/projecting, get best case and wrost case scenarios, and try to estimate likelihood of the various outcomes. Then, I can finally get on with life again. Knowing what will happen in the worst case really helps me maintain sanity and let go a little of this worry. Did I mention that I don’t really like change, and tend to react to it poorly initially? I think that falls under this, too, because it’s harder for me to plot the potential future outcomes when I have some new variable to deal with. There is little that troubles me as much as financial/job insecurity.

Bipolarism is another matter altogether. Part of the trouble with it is the vigilance needed. I (and to a lesser extent, the boyfriend) have to watch for hints of mania and depression. Am I sleeping less than usual? More? Do I end up talking faster and getting excited about seemingly insignificant things? Am I…grey, with no strong feelings about anything? (sorry, it’s a state that’s hard to describe).

And then there’s when it hits. Both upswings and downswings are dangerous to my relationships. In upswings, I am easily angered and prone to snapping and fighting. I have boundless enthusiasm and am less than pleasant when others don’t go along with it. I’m thin skinned and easily hurt. There’s a lurking mild paranoia that everyone is talking about me behind my back and secretly can’t stand me (which has only been aggrivated by periods in my life where that has been mostly true). In downswings, I have such a deep inertia that it is almost impossible to get me moving, physically or emotionally. Physically, I am tired and want to sleep a lot, and I don’t really want to get out of bed. I don’t care about eating, which means I either forget to eat or eat far too much of things I find tempting. I also eat a lot of convenience food, because preparing something more wholesome is just too much work. I worry deeply about the future, and question the futility of continuing with law school constantly. I often go incommunicado, speaking only in class or when spoken to directly. I don’t sign on instant messenger or call people, and I often retreat into books. When I’m depressed, it’s incredibly hard to manage basic self-care, so things like showering tend to get farther apart than I would like, and my physical disabilities make this worse.

A lot of literature and some people talk about sliding ‘down’ into depression. For me, none of the psych issues I have feel like sliding ‘down’ or ‘up’ so much as they feel like a shift…sideways. A paradigm shift, a fundamental change in the relationship between me and the universe. Sometimes, as with a bipolar depression cycle, it’s a subtle, slow shift that can be hard to spot until I’m really far out and start getting a bit irrational. Other times, like panic attacks, it is as if the world SNAPS sideways, violently and suddenly, and the change is painful and frightening. My perspective is so altered that my former perspective is incomprehensible, or worse yet it feels like my former perspective is completely, utterly wrong.

With those more sudden shifts, I cannot actually tell that what I feel and sense is not rational processing. I am so completely in thrall to my mental state that reality does not have a bearing on how I feel. To give an example, if I end up in a car during a panic attack (which is a REALLY BAD IDEA), I am usually convinced that everyone on the road could potentially kill me at any moment. They might crash into me or pull out a gun on me or god only knows what, but any one of them could harm me. Now, my rational self knows that this is not the case. I drive defensively and am very aware of where cars are around me, so that I can change my position relative to them if there is a sudden accident or something similar, but I am not normally afraid of them. A panic attack takes rational caution and turns it into unthinking, unprocessed fear. The best way of dealing with a panic attack that I have discovered is to lock myself into my house, and then lock myself into my bedroom, and take the panic attack medication. Being in an otherwise empty room in an otherwise empty house is about the only thing that can assist the medication in bringing me down out of that terrified state.

You have to understand, when you are dealing with mental illness of any sort, part of what you are dealing with is fundamentally irrational thought. ‘Everyone thinks I am stupid and ugly and annoying’ is not rational. After all, I know that I have friends and that the boyfriend thinks I am incredibly sexy. But the depression-colored lenses make it much harder, if not impossible, to see that. That’s how depression gets you. You aren’t just sad or down in the dumps, you’re irrational. That’s how depressed suicides happen. You believe something like, ‘I hurt the people around me so much and so often that they will be happier if I no longer exist to hurt them.’ In a depressed state, you can honestly believe that the hurt your death will cause is less than the hurt you will cause by existing. Anyone who has true friends and loved ones can tell you that this is emphatically not so! But in a depressed state, the trouble you cause by existing is often magnified so dramatically in your mind that you cannot believe that your death could possibly cause more.

Likewise, in a depressed state, your present pain can be dramatically magnified, to the point where you cannot believe that it is worth continuing.

Suicide is not a selfish act. It is an act of great pain and desperation, and sometimes the person trying to kill his- or herself actually believes they are doing an altruistic thing by removing the pain they cause their loved ones. Suicide is an act of irrational views and skewed thought. It is the product of a mental state that is fundamentally unhealthy.

So I guess that brings us to the question of what you DO about mental illness.

If you are very privileged and very lucky, you find a good therapist and a good psychiatrist or doctor. That involves a lot, though – it involves having the financial resources to get ‘help’. It often involves a lot of phone calls and searching and trying out new people, which is incredibly difficult when you’re starting from that slide sideways. It involves recognizing that you actually need help, which a great many people never do. It involves an element of luck – finding the right drug and the right doctor and the right therapist is really hard.

For the sake of argument, let’s say you have the privileges to be able to access appropriate treatment.

First, you have to find a doctor and/or shrink who has openings for new patients.
If you’re lucky, their personality and approach to therapy will be a match for you. I’ve only had a good match with about 1/3 of the therapists I have seen over my lifetime, with a more-or-less adequate match with another 1/3, leaving 1/3 who were absolutely abysmal and actually harmful to my wellbeing.

Next, you get to start the drug merry-go-round. We don’t know exactly why or how psychoactive drugs work, so we can’t predict with any accuracy how an individual will react to them. For any individual, some drugs will make him/her better, some will make him/her worse, and some will either cause other problems of equal weight or just not work. A drug may make someone better, but not better ENOUGH. Even drugs that work may eventually cease to be effective. We don’t know why, we only know that it happens. Personally, the worst depression I’ve ever had was made deeper by a mood stabilizer that didn’t work for me. I’ve also had a prescription make me sleep 18-20 hours a day. I’ve had one kick me out of a depression and straight into mania. I’ve had a drug that worked for circa 6 years abruptly cease to work. It is a journey of great potential dangers and great potential rewards. You can’t just skip off to your doctors and get some pills and be all better – not unless you are unbelievably, deeply lucky.

Now, even if you have insurance that allows you to do all of this, most companies will make you fight for it. Argue to keep your therapy covered. Struggle to get the prescription that works covered and keep it covered. Fight to get enough visits to do you any good. And heaven help you if you need to be hospitalized, because many insurance plans do not cover mental health hospitalizations.

A big part of what makes mental health issues so hard to deal with is the prejudice and misunderstanding. In dealing with my particular disabilities, I have to accept that there are times that I am not particularly sane. However, not being particularly sane doesn’t mean I grab a kitchen knife and start whacking people up. It’s far more likely to mean that I go curl up in bed and only get out when I MUST go to the bathroom or eat. Being mentally ill doesn’t make me a danger. I’m not hazardous to other people, and frankly most of the time I’m not even hazardous to myself. I’m not some ticking time bomb. I’m just…a person who has greater ups and downs than average, and I am sometimes ruled for very short periods of time by my irrational fears or my irrational needs for cleanliness in the house. I’m sure that can make being close to me difficult at times, but I shouldn’t be treated like some kind of harmful, dangerous freak.

Forgive me if this piece is long and rambling. I don’t talk about mental health all that often, and this was kind of triggered by reading a very good piece written by my friend here – http://naamah-darling.livejournal.com/437140.html.

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