Sunday, February 24, 2013

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.

Friday, February 22, 2013

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.

Monday, February 4, 2013

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.