Chronic Illness Problems

(Note: This is meant to be sort of funny, a way of blowing off steam. But these are actual problems I encounter. Not everyone with chronic illness/invisible disabilities experiences the same problems, but a lot of people will probably relate to at least some of this.)

Need to nap because fatigue. Can’t sleep because pain.

End up rolling around and looking for a comfortable position until the alarm goes off.

Or you can’t let yourself nap because it will ruin your sleep cycle.

Sleep cycle: In pain, can’t sleep at night until total exhaustion takes over. Fall asleep at 5am. Barely get up in time for noon doctor appointment. Either fail to nap as above, or fall asleep for 6 hours and wake up confused with a headache at 9pm. Can’t fall asleep *again* because slept too much + pain. Cycle continues.

Having to write down every thought because they will be forgotten within half an hour otherwise. Unfortunately, always get best ideas while driving.

Or in the shower. Or while trying to sleep at 3am.

Multiple doctors confirm that you cannot work. Social Security Administration contacts these doctors, determines that you can work.

This has happened to me repeatedly, and I still don’t understand it.

Need to use drivey-cart (I think there’s a better name for these?) at grocery store due to fatigue. Have to stand up to reach items on shelves.

Afraid people will see you standing up and think you’re not really disabled and you shouldn’t be using the drivey cart.

When the drivey cart runs out of battery halfway through the store.

It appeared fully charged when you got it. I’m lucky enough to usually have other people shopping with me, but I would imagine some people are just stuck until an employee wanders by.

Lying down = back pain. Standing up = hip and foot pain. Sitting = knee pain.

Only comfortable position is on the couch with back against the armrest and legs stretched out. Not an ideal position for work or crafting, but you can watch Netflix and play with your tablet like a champion.

Forgetting what you’re doing.

Starting to write a blog post, then getting up to wake up your roommate, making coffee to entice roommate to get up, then remembering you made a green smoothie last night and you want your partner to try it, but there are no clean cups, so you wash cups, then start thinking about how it’s weird that a glass cup is called a “glass” and a plastic cup is called a “cup” even though they are functionally the same item made from different materials. When roommate gets up, remember that you wanted to ask him if your DS is in his room, and he says no, so you start looking for it in your own room, then you find your AA battery recharger so of course you have to look for the rechargeable batteries. Then you go in the living room to announce that you found the things and get distracted playing with the cats. Finally remember you were writing a blog post.

This is on a good day. On a bad day you don’t get out of bed until 5pm.

Having to explain to roommates why you either shower only twice a week because of pain and fatigue, or why you take multiple hot baths a day to relieve muscle pain.

I don’t have this problem with my current family, but you’d be surprised how annoyed some roommates can get just because you bathe twice a day.

Carrying a cane even though you don’t have foot or leg problems, just so people will recognize you as disabled.

To get a seat on public transport, or to get out of a car legally parked in an accessible parking space without people yelling at you because you don’t “look disabled.”

Having to do a 24-hour urine sample, TWICE, because somehow the lab messed up and didn’t do the correct tests on the first one.

This involves keeping a jug of your own urine in your refrigerator. I’m glad I don’t live with random roommates anymore, because THAT would be a fun one to explain.

And a series of meds-related problems:

Constantly having your medication changed around by different doctors, so that you have no baseline state to compare with to know if the new medications are working.

Need to eat regularly because blood sugar problems. Meds to regulate blood sugar cause nausea.

Being on so many meds you can’t tell what symptom is a side effect of what drug.

Or maybe it’s a new symptom of one of your illnesses.

Needing to educate friends and roommates about life-threatening illnesses that might arise due to your medications (such as lactic acidosis or serotonin syndrome.)

The classic can’t function without pain meds because pain, can’t function with pain meds because doped up.

And there are more things, but of course I can’t remember them because brain fog.

There’s more fun experiences here: http://chronicillnesscat.tumblr.com

Today was weird.

"Today" actually started in the middle of the night, when I read this post.

Which inspired me to write this post.

When I got up again this morning, it was rainy and all I felt like doing was watching Netflix, so I watched the documentary Happy.

After that, I read a little bit in Flow.

Then I got on my computer, and read this post.

After that, I jotted down some quick plans for putting up pictures and posters in my room that would remind me of things I used to enjoy.

Then I read this post.

I don't really have much else to say, except too many feels.

The Difficult Post

This is going to be a post about the past two years of my life, and my struggle with suicidal thoughts during that time. Your first instinct may be that you don't want to read about that. And, while there are no graphic details, it is possible this post will be triggering for people who are, or once were, struggling in the same way. If that is the case, by all means, skip it. But if you don't think you'll be triggered and just don't want to hear about sad stuff, I urge you to try and read on. It will help give some insight into my behavior over the past couple of years, and more importantly, may give insight into how to best support other people with the same kinds of issues.

"I am better". If I say that, it is true and a lie at the same time, because of the way "better" can mean more than one thing. I am definitely better than I was in 2011 when I had to be hospitalized twice in the same summer for suicidal ideation. I'm stable, and thoughts of suicide are mostly in my past. I've found a chosen family who love me, my living situation is the most comfortable it has been in a long time, and I've learned a lot about self-care and what triggers I need to avoid to be safe.

But that word, "better", also implies that my illness is over. And while it is possible for depression, like cancer, to go into a sort of remission, I don't think it's ever safe to say depression is over. It's kind of like alcoholism. Members of AA generally refer to themselves as "recovering" rather than recovered, no matter how many sober years they've put behind them. This is because they know how easy it is to slip back into that dark place, and how for the rest of their lives they will have to be vigilant, how it is never safe to take "just one drink". Depression is like that, too. I have to be careful to avoid things that may trigger my thoughts of self-harm. I have to create something of a bubble of self-protection around me, and always consider the effect any action may have on my mental health. Much like a person with diabetes must be more careful than most people about what goes into their diet, I have to be more careful what goes into my mental "diet." This means surrounding myself with safe people, avoiding scary news articles and hateful internet comments, not watching violent or soul-crushing movies (the latter is how my partner describes Les Miserables, which is why I haven't seen it yet), etc. Just like a healthy food diet is a good idea for most people, this mental diet would probably be good for anyone. But for me, it is necessary for survival.

These days, most of my depressed thoughts have to do with what the worst part of my depression has cost me. I've lost a lot of friends. Most of these people didn't outright walk out of my life, they simply quietly slipped away while I was too preoccupied to do anything to mend the relationship. I know I hurt people, and I don't know how to fix it. For one thing, I'm not entirely sure what I did that made people so uncomfortable. My guess is that my behavior was simply too unpredictable for a lot of people to feel safe around me. I was never violent toward anyone other than myself, but I can see how my friends may have simply not known what to do. So I want to talk a little about what was going on.

Some of the details are too painful to share, and some I can't responsibly share because they involve other people. What I can say is this: I spent most of 2011 living in a house where some of the people were emotionally abusive toward me and most of the people were heavily involved with drugs and/or alcohol. I also spent 2011 and 2012 going through the intense emotions that come with a gender transition (more on that in a bit). All this while still grieving my mother, who I never got a chance to fully grieve because I was too focused on surviving. And, like I said, I won't share details about things that involve other people, but I went through a really heartbreaking tug-of-war friendship with a person I thought I could trust, who ultimately shunned me. This person had their own issues to deal with and I'm not angry or trying to shame them, but I want people to understand the impact this situation had on my mental health. It was hurting me deeply, and I couldn't talk about it because I didn't want to hurt this person. I still can't. It was a mess.

More about that gender transition. That I can talk about, because it was an internal process. I never shared the details of what I was going through at the time because I was too busy going through it. I first realized I was not cisgender in the summer of 2010, which was part of the motivation for my move to Massachusetts. At the time, I thought I was genderqueer - neither fully male nor fully female - and didn't really feel any desire to live as male. But I was under a lot of cultural pressure. Western society is really heavily invested in the gender binary and really, really wants people to "pick a team". And this pressure doesn't come only from outside the trans community, but also from within. Even in the most "trans-friendly" of spaces, non-binary people are often overlooked. And some trans people - not any of the ones I know personally, but many of the people running trans support groups, websites, conferences, etc - are openly hostile to non-binary people. For example, on Tumblr there are a lot of binary trans guys who stalk the FTM tag, looking for unwitting non-binary people to attack, calling them "transtrenders" and accusing them of "appropriating trans identity". There are less openly hostile people who acknowledge that non-binary people are trans, but still believe some trans people to be "more trans" than others. And even well-meaning binary trans people are prone to simply forget that non-binary people exist. Plus, all the gatekeeping in the medical community leads many non-binary people to feel they should pretend to be binary-trans in order to have access to services.

So it was that pressure, combined with the fact that I did have some internal desire to be more masculine, that made me feel I must be FTM, a label I no longer use for myself. (I do still use male pronouns, for the record.) I don't regret the steps I took toward living as male (aside from the fact that testosterone left me with a bass singing voice that makes it a little hard to sing along with the radio, but that's a trivial matter). What I do regret is that I was so deep-down terrified that I might be a "fake" trans person, that I pushed down any desire to do anything remotely feminine. I did allow myself to wear very dark nail polish on occasion, but only while wearing a binder and otherwise trying very hard to "pass" as male. And you know, trans guys who really are deep-down male also try hard to pass, but they have a different motive. They want to be seen for who they really are. I was doing it because I was afraid who I really am wasn't good enough, that being non-binary wasn't "trans enough" and I had something to prove if I was going to call myself trans. I was afraid that the minute I let my guard down I'd suddenly be a woman - despite never feeling like one in my entire life - and have to go to all my friends and be like "J/K! I was actually cis the whole time!" That fear kept me from being able to relax and enjoy anything, and contributed a lot to my depression.

Last year, I did get out of the abusive-drug-house and into a safer house with a bunch of self-identified bronies. And yeah, bronies have gotten a bad reputation for being creepy and misogynist and all, but these particular people were nice and a big improvement over the previous housemates. They treated other people with basic respect and didn't attack me for things like decorating a jar, singing Beatles songs, or paying rent a single day late (all things I was scolded, insulted and even screamed at for doing in the previous house). And it happened that I actually do like My Little Pony, so it was nice to live in a house where I could watch that in the living room with friends, instead of in my room at a barely-audible volume to avoid being ridiculed.

That house, and the friends I made there, helped me heal. What helped even more was meeting my current partner, and his partner (we're a polyamorous family), who have been wonderfully accepting.
And they've seen me at my most distraught, because I did go through a brief relapse back in October, when I ran out of meds for a week and went through a falling out with a friend (this time most people agreed it wasn't my fault, but it still hurt) all at the same time. They chose to be my family after seeing me at my worst, and that is really huge. Even more, I know they love me no matter how I choose to express myself, so I've been feeling my creativity gradually become less stifled. I think stifled creativity was a big part of what was keeping me depressed.

But I'm still sad. I'm sad because even as my depression gets better, my fatigue is not, which has led me to believe it has a deeper medical cause. All my test results are normal, which means that cause isn't something easy to detect and treat like a vitamin deficiency, but is probably a more elusive, less treatable diagnosis like chronic fatigue. I've also had pretty bad back and joint pain, which, combined with the fatigue, have kept me out of work. (My partner is wonderful about this, but he doesn't make a lot of money, so finances are tight). I'm also sad because I don't know how to go about repairing the friendships I've damaged. I've accepted that the people who've completely left my life probably aren't coming back, but those are a small few and I'm not sure what to do about the rest.

I don't want to apologize for my mental illness. But I guess what I can say is, I'm sorry my illness scared people. I'm sorry it drained my emotional resources so I couldn't be a good friend. I'm sorry my behavior was so unpredictable. I'm not sorry for being suicidal, because I couldn't help it, but I am sorry my suicidal ideation sometimes came across as a threat. I don't recall consciously being mean to anyone, but I am sorry if I was mean by accident or during a time when I was too incoherent to be aware of my behavior. I'm sorry I broke people's trust.

My depression isn't "over" - I'm not sure it will ever be over - but I have reached a point where I am ready to begin making amends. I am not ready to deal with a bunch of people suddenly telling me everything I have ever done that bothered them, so please don't do that. But I am definitely ready to hear things like "In the future, when X happens, I would like it if you did Y." I am ready to have people tell me their boundaries and how they would prefer to be contacted, and what they find triggering and would prefer that I not share with them. So if I've hurt you in the past couple years and there are things I can do now that will help heal that, please let me know. And please know that if I did hurt you, it was because I was literally not able to take care of my own needs, let alone anyone else's. I'm sorry that happened. It was never, ever because I didn't care.

Neither, Am I

I used to write about my gender mostly on Tumblr. It felt like the safest place, since this blog was known to so many people who know me in “real life”. Over the last couple years, though, the tables have turned. Now it seems people who know me are the safest and strangers on the internet are the ones who judge me harshly.

I have never received any hate for being trans from people who weren’t trans themselves. I’ve been misgendered, sure. People have slipped on name and pronouns. They’ve given me curious looks. But the only people who have outright hated me are trans men who decided I couldn’t be trans if I wasn’t exactly like them. “You’re not a real man”, they say, “so you must be a woman.” The word “woman” is invariably said in a sneering manner, as if woman is the worst thing a person could be called.

For those guys, what makes them not-women is that they are men. But I’m not a man, either. What makes me not-a-woman is simply that when someone tries to stick the label “woman” on me, it peels off and flutters to the ground like a band-aid with too much dirt on the back. I can’t explain what it is about me that makes “woman” not the right label. It isn’t man-ness. It’s simply a lack of woman-ness.

Truth is, I like having access to a certain kind of femininity. I like to cover myself with rainbows and sparkles. I like to play with babies and keep a cute house. And when it comes down to discussion of emotional and spiritual matters, I’m much more comfortable in a group of women than a group of men. I’m drawn to authors, bloggers and motivational speakers who focus on women as their audience. I enjoy hobbies that appeal to large numbers of women, like hula hooping and needle crafts.

So what does that make me? Where do I fit? And why do I have to fit anywhere, anyway? Why can’t I just be?

Why can’t we all just be?

About the lump.

So I haven't blogged regularly in a while and I know some people might find this blog and not have any idea what is going on. But I also know that most of you find my blog from my links on Facebook, and that means you're a friend, or at least a friendly acquaintance.

It is probably taboo to point this out, but guys, I know how many people view my posts. And I'm a little disturbed by the number of people who viewed my last post, in which I revealed I need to be tested for breast cancer, without commenting. I received no comments here, no comments on the Facebook post where I linked the blog post, and no private messages.

I know I posted a donation link. I don't care about that. I don't care if you can't donate. But like, talk to me. I'm going through some scary shit right now, and I need to know who is going to be there for me and who isn't. I realize talking to people about their breasts, especially talking to trans people about their breasts, is uncomfortable, but please say something to me. If I hear only silence, it feels pretty lonely.

With that out of the way, let me give you more info on what is going on.

I found this lump about three weeks ago, and was hoping I could wait until my MassHealth got straightened out before I saw anyone about it. 80% of lumps are benign, and lumps often come and go throughout the hormone cycle, so I figured it was something I could wait out. But after a few weeks, it hadn't changed. I could feel changes in the texture of the breast tissue around it - my breasts are lumpier now than they were a few weeks ago - but the lump itself persisted. I was finally pushed to go to the doctor when I had some unrelated but extremely uncomfortable medication side effects. At first they weren't going to let me see the doctor without paying $170 up front, which I didn't have. I started crying in the middle of the waiting room and said "I really need to see a doctor." The receptionist made some calls to the financial department, and they finally let me in. I am unclear on whether I will eventually receive a bill for the $170.

The doctor performed a breast exam and noted that my breasts are lumpy overall, but that this lump definitely felt different. She recommended I schedule an ultrasound right away - which I haven't done yet, because I'm still trying to figure out how to handle that financially. I plan to call MassHealth and tell them I need to be screened for cancer and see if that might speed the approval process or at least get me some temporary assistance. I also plan to contact the Women's Health Network and see if I can be evaluated for free.

The lump is hard, smooth, and oblong. It's a couple centimeters wide, and doesn't move. Based on the way it feels, I think it is either a benign fibroadenoma, which are common in my age group, or cancer. Obviously I'm hoping for the fibroadenoma. I don't have any other outward signs of cancer such as bleeding or skin changes.

What the ultrasound will determine is whether the lump is solid or fluid-filled. To me, it feels solid, which means there's a good chance I will need a biopsy to determine if it is cancer.

I was pretty calm about all this at first, but as time goes on and it doesn't go away or get any smaller, I'm getting pretty scared. I could use lots of emotional support right now.

I'll post updates here when I know more.

I need help.

I'm having some pretty horrible medication side effects and can't think clearly, so I'm just going to copy-paste from my Tumblr to tell you what's going on.

I’ve been really hesitant about asking for money, but I ultimately decided going without money will be more harmful to me than any backlash I may receive, so it can’t hurt to ask.
I am a disabled, queer trans person who is in the process of applying for food stamps and state health care. For the past few months I have been unable to work due to severe depression and anxiety. I also have a lump in my breast that needs to be evaluated and I strongly suspect that I have sleep apnea that needs treatment. I am planning to apply for disability to help me out in the long run, but that is a long process that often involves several appeals. My therapist would also like me to go into a DBT (type of therapy) day program for some period of time, which will also make it difficult to work.
So my current holistic treatment plan is as follows:

• continue with my weekly therapy and monthly psychiatry appointments, which costs gas and parking money + a fee
• continue with my currently prescribed medications, which cost $75 and $50 a month without insurance
• consult my doctor for referrals for a mammogram and sleep study
• attend at least three weeks of a DBT or other therapy day program
• continue on vitamins and omega-3s, which are not covered by insurance or food stamps

In the meantime, I need help affording my living expenses. My partner helps me somewhat, but he works retail and makes barely over minimum wage. Our lease runs out at the end of March and we need to afford rent and deposits for a new place in April, and a Uhaul. I also have to pay a small amount to keep my phone on, and pay other expenses related to having a car, such as insurance.
All of this adds up very quickly. I have set my GoFundMe goal at $800 for now, because I think that will at least get me over the hump until I have health insurance and food stamps in place. But what I’m really concerned about is helping my partner to pay rent. He cannot afford rent for himself, me, and his other partner all by himself (his other partner is also unable to work). These people are the only family I have, as all of the people who raised me have died and I have no siblings. I don’t want to burden my partner, and so I’m reaching out to people who might have some extra money they can throw my way. Any contributions would be greatly appreciated.

Update as of today, Feb 22: I went to the doctor without insurance because I was experiencing really unpleasant neurological side effects from one of my medications. I also got the breast lump examined. The doctor ordered an ultrasound, blood tests, said to follow up in a week and see my psychiatrist next week also. I don't suppose I'll have insurance by next week, but I don't want to let this wait if it could be cancer. I feel like I'm having a nervous breakdown right now. My body has so many things wrong with it and I just want to be okay.

Please help if you can, and please pass this along.

http://www.gofundme.com/22de3w

7 Ableist Arguments I'm Tired of Hearing (from "Progressive" People)

Ableism is the view that people who don't have a disability or illness are somehow better than people who do, or the refusal to acknowledge that disabilities even exist. You would think I'd encounter less of this in progressive communities, but I actually find ableism running rampant among people who think they're being compassionate and inclusive. I know most of these people mean well, so I want to shed light on some particularly problematic arguments I've seen. Please consider the impact on people with disabilities and chronic illness before you make any of the following claims.

 

1. Everyone can breastfeed

No, they can't. There are a lot of things wrong with this argument, because it implies that every baby is raised by the person who gave birth to it, which isn't the case. But even birth mothers can't always breastfeed. My mother couldn't, because she was on powerful medication that wouldn't have been safe for me to ingest, plus she had a skin condition she was worried about passing on. There are lots of reasons a person might be physically unable to breastfeed. I do think breastfeeding is the best option when it's possible, but it isn't always an option. Not being able to breastfeed doesn't make someone a bad parent, and they shouldn't be shamed for it.

2. You can decide to be happy

Boy, if this were true, my life would be a lot different. I've poured tons of time, energy and money into anything that might ease my depression symptoms, from antidepressants and therapy to self-help books and vitamins. If happiness were the result of personal effort, I'd be the happiest person in the world. Unfortunately, for people with mental illness, it just doesn't seem to work that way. I understand the basic sentiment behind this statement - that you have control over your priorities, you can choose gratitude over self-pity, and so on. But there are people who, by reason of brain chemistry, trauma history or insurmountable life circumstances, simply cannot wish our pain away. Telling us "you can choose to be happy" sounds a lot like blaming the suffering person for not making that choice.

3. Abortion is okay no matter the reason

I know I'm going to take a lot of shit for this one, but it's important to me, so here goes. I don't think every reason for having an abortion is equally valid. I am a feminist, and I believe safe, legal abortion should be available to people who don't feel equipped to become parents. But there are eugenic reasons for having an abortion, and I think eugenics are disgusting. The fact that up to 98% of fetuses with Down syndrome are terminated makes me want to cry. I understand choosing to abort a child with an illness that will lead to a very short, painful life, but Down syndrome is not such a condition. People with DS are able to live fulfilling lives, often holding jobs, getting married, even attending college. To suggest that a person's life is not worth living because they have a disability is unacceptable. And not every disability makes itself apparent before birth, so if you're not prepared to have a child with a disability, you aren't prepared to have a child, period. I still believe abortion should be the pregnant person's choice, but I also think people have a responsibility to consider ALL the possibilities before deciding to start a family. Once you've committed to have a child, you don't get to choose what kind of child you have.

4. Vaccines cause autism

No they don't. It's been proven that they don't. But even before it was proven, I had a problem with this argument, because it rests on the idea that it's better for a child to be potentially dead than potentially disabled. Polio, measles, rubella, diphtheria, tetanus, and whooping cough are deadly. Autism is not. To suggest that it's better to risk subjecting a child to a deadly illness than risk them being autistic is deeply insulting to autistic people, not to mention trivializing the suffering of people who've survived those illnesses. Now, while I myself am vehemently pro-vax, I do know some thoughtful, intelligent people who are anti-vax, so I know that there are other reasons a parent may choose not to vaccinate. But if any part of your reason for making that choice involves fear of autism, you need to seriously re-evaluate your thoughts on the matter.

5. ADD/ADHD isn't real

I agree that ADD is probably way overdiagnosed. I also agree that the environment of modern public schools sets children up to be diagnosed with ADD, and subsequently medicated, simply for behaving like children. But the argument I frequently encounter is that ADD was invented by schools and that there is no such thing. As a person who has ADD and was NOT diagnosed in school, I can confirm that this isn't the case. For a person who truly has ADD, it's not simply a matter of not being able to focus when something is boring. I can't focus on things I want to focus on. I don't watch movies because 90 minutes is just too long - I have to stop halfway through even if the movie is really good, because my attention span is spent. I can't read a book for more than about half an hour at a time, and my mind often wanders when listening to a friend speak, even if what they're saying is interesting to me. On top of that, I have a lot of trouble with executive function and organizational tasks. The way my life is currently structured I seem to function well enough, but if I were to take on a mentally strenuous goal - say, graduate school - I would probably need a lot of extra support, and possibly medication, to function on the same level as my peers. 

6. You don't need allopathic medicine

I don't talk about this a lot, but my mother had schizophrenia. She had to take powerful antipsychotics in order to have any semblance of a normal life. I had relatives who would suggest that she didn't need to be medicated, and that in fact it was the medication itself that had caused her mental illness! But I've seen her off her meds, and she was simply not the same person. Haloperidol allowed her to connect with people and freed her from terrifying hallucinations and delusions. It allowed her to be my mother. 

I've known people who needed allopathic medication to keep their hearts going, to manage their diabetes, even to digest food. There are people who can only stay alive because of CPAP machines, colostomies, or shunts. I'll try an herbal remedy if I have a cold or a headache, sure. But when I couldn't keep liquids down and was running a 104F fever that turned out to be caused by a kidney infection complicated by sepsis, you better believe I went to an ER for some antibiotics and a saline drip. I've seen people actively discourage friends from going to the hospital to get checked out when they had symptoms that could point to something life-threatening. That's dangerous and irresponsible.

7. You wouldn't be ill if you went on x diet

If a person asks for suggestions on how to manage their illness, it's perfectly fine to mention that you've heard a specific diet might help. But I've seen people claim that if a person refuses to go on a raw-vegan or gluten-free diet, they are to blame for being sick and deserve no sympathy. As heartless and rude as this is, it's also factually questionable. If anyone had found a 100% effective, works-for-everyone cure for diabetes or cancer, they'd have a Nobel Prize. I know not every treatment option has been empirically studied and that "big pharma" exerts some influence over this, and I'm willing to accept that there are "alternative" treatments out there that could bring people some needed relief. But when people start blaming the victim for being sick in the first place, I stop listening.