life


On late Tuesday night/early Wednesday morning, I fell on the kitchen floor. I didn’t hurt my left hip, but I banged up my right knee and both arms & wrists. My left wrist is still swollen and hurts like crazy. I’m probably going to get it checked this next week if it’s still hurting on Monday and if I can get an appointment. I hope it clears up before I have to do that.  Between pain from falling, spotty internet & phone access, my iPod getting crankier and crankier, Facebook’s Messenger app acting antisocial, and other “fun”, this week has been rather unpleasant. Hopefully, the next one will be better. It has to be, right?

I Keep On Falling





My veins suck. They have all kinds of structural issues and when combined with my chronic dehydration and other chronic health issues, they don’t like to play well with needles. I don’t expect blood draws to go smoothly. I’ve learned over the years that most phlebotomists (and some other medical professionals) aren’t going to believe me about just how bad they are. I’ve also learned that if they stay calm, it takes a shorter time, so instead of chewing them out about what’s going on, I smile and reassure them. But if I could tell them a few things, I would tell them: Stop hitting me. You may classify it as tapping or slapping, but it’s painful and it won’t help you. Slapping does not make it easier to find the veins. It doesn’t make them pop up. For me, it seems to make them “hide” because the stimuli is so painful; also, I have a connective tissue condition called Ehlers-Danlos Syndrome, so I’m prone to bruising, which make it even harder to spot the veins. The tapping/slapping/hitting also can damage the blood that you’re attempting to draw and mess with the results. I know I’m in my thirties, but my veins still roll. Every time I specifically tell one that my veins roll, they say that I’m too young for that to happen. Veins rolling is mainly associated with the elderly, but it is also associated with people who have connective tissue disorders. This is why you don’t continue a saline drip into an already blown vein. (Twitter) If I tell you my vein is blowing, then you need to listen to me. I know my veins better than anyone else, and I should since I’ve had them my whole life. I know what a blowing vein feels like, and I know what it feels like once one has already blown. For me, if I get a really cold burning sensation right where the needle is, I know that that needle better get out of my arm. I once told a nurse that the vein was blowing and she ignored me. She continued to work with the vein and even tried flushing it to start an IV. If you’ve never experienced the joy of saline flushing through an infiltrated (blown) vein, then consider yourself to be extremely lucky. I already drank the water. I am aware that being dehydrated impacts whether or not your veins are visible. Before scheduled lab tests, I make sure to drink even more water than I normally do. It doesn’t help. Stop being cocky and trust your patient. I know that some of these people are really good at their jobs, but the cockier they are the more likely they are to have problems finding my veins. And I’ve talked to other people with bad veins who have noticed this to be a common trait. Like I mentioned with blown veins, I know my veins better than anyone else. If I tell you that my veins suck, then I’m probably telling the truth. Even if the patient doesn’t actually have bad veins, the phlebotomist needs to behave like the patient does. What is the worst that will happen? Be confident. Yes, I want people who aren’t cocky, but if you’re nervous, you will miss the vein. Just be calm and respectful. Forget the gadgets. The only thing that was ever learned about my veins with a vein-finder was that they had more branches than most…and that they have are super-deep and really small. Using heating packs might help a little, but a warm towel or blanket works just as well. Oddly, a blood pressure cuff works better than a tourniquet. Tourniquets should die a painful death. Okay, back to the connective tissue disorder and its complications. If you’ve watched many episodes Law and Order or CSI:, then you may have heard of petechiae. It happens when the capillaries (really little blood vessels) explode and spew their bloody guts into the tissue that makes up the skin. Petechiae isn’t painful, but tourniquets are. (Blood pressure cuffs also cause petechiae and pain, but veins pop up quicker with them than with tourniquets.) Ask me about my allergies before you stick me. I know that it’s the patient’s responsibility to tell the phlebotomist and I try to get across that medical adhesive and latex are a no-go, but if they aren’t listening or they forget, it helps if they ask again just to make sure. Again, this is one of those what’s the worst that will happen things. Prepare your needle and equipment before you go hunting for a vein. A lot of people like to hunt for my vein before they have the needle ready to go in, which means they find one, walk away, grab their stuff, wipe me down, and then go to stick me. Veins that roll are not veins that you can just walk away from and expect to still be there when you get back. My veins have other plans. Stop digging. It hurts and it typically leads to a nerve being hit. That is pretty unpleasant. And by “pretty unpleasant” I mean that I would rather walk barefoot for 5 minutes down in Antarctica than have a needle hit a nerve. Sharp pointy things do not play well with nerves. Oh, so now you think they’re too hard to find? No shit, Sherlock. The exclamation of “these are hard to find” is always one of those things that makes me want to roll my eyes. I know that some people might lie about the difficulty, but I don’t. I don’t need your affirmation that they are hard to find. I know that they are. I’m the one who has been stuck in the palm of the hand and the top of the foot when safer/better areas were not found. I’m the one who has had to wait for the charge nurse to come do the stick or for the anesthesiologist […]

Stop Hitting Me



I was going to call the hematologist today & chickened out. I think I may be putting it off because I’m afraid of moving up the infusions. They actually do kinda scare me—well, the killer headache aspect. But I know I need to go through with them.  I also need to get my hip checked out, which I’ve been saying for months. I don’t know if that would involve going to just the family doctor or the family doctor plus physical therapy and/or an orthopedist. I don’t even know if I would be seeing the same orthopedist. And I don’t know if anything could really be done. It’s either a subluxation or tendinitis. Treatment for either would probably suck, and, until I get the anemia situation under control, I don’t really have the energy to deal with it.  Dad got a letter from the neurologist saying his MRI was normal. To him, that means nothing is wrong and this is all normal age-related stuff.1 But he doesn’t understand that a person can have a 100% normal MRI & still have dementia—even though he and I have gone over that. This week. I don’t know if he has forgotten it or is in denial. I know he doesn’t want the diagnosis to be real, none of us do, but the family doctor and the psychiatrist have both said all signs point to dementia. But we have to accept it because there is nothing that can change that fact.  And since it’s October I’ve started worrying about other things. Ridiculous things. Like that now that Nana is no longer living on her own, and is in the nursing home, do my parents & I have a place to go on Thanksgiving & Christmas? Or do those become just another day for us. I mean technically Christmas has been that way for years—when you don’t have presents & don’t put up decorations, holidays kinda lose their magic. But I don’t know what will happen this year, if my aunt will host, if we’re invited if she does, if we’re going to the nursing home that day, if I try to get everyone in my house to stay awake long enough to watch parades or anything. I just don’t know.  And it’s stupid that I cry about that a lot lately. But I just want one or two good, non-stressful days. I want life to make some kind of sense again.  I just feel lost.  His EEG and Doppler were yesterday and may take a few more days to get results. ↩

Chicken Janet


Seriously, this year has been so unpleasant, and not just because Donald Trump is running for President. With Nana going in the hospital, then the nursing home, dad’s health decline, everyone dying (Connie, Jay, Andrea, Joey), my depression coming out to play, the anemia rearing its ugly head, etc., it’s just been quite yucky.1 But it’s had decent moments. I almost had a paid article on xoJane, which encouraged me to submit more pitches & to start entering my poetry in literary magazines. That hasn’t resulted in any publications yet, but I just started. Besides, I know that most writers get a lot of rejections before they get their first acceptance. My time will come.  I’m sorry I haven’t been writing more. I just feel like shit a lot of the time lately. And it’s hard to encourage yourself to talk about how you feel like shit when you’re feeling that way. I also have started feeling like I’m too self-centered and don’t really give enough attention to the people I care about. I will try to do better.  Sometimes the most childish word is the best. ↩

Ready for This Year to Be Over



Hello, it’s me. Yes, I’m back on the last day of the Democratic National Convention to give the fifth list of reasons to oppose Donald Trump’s presidency and to oppose him in general. But if this list doesn’t convince you, maybe the previous four (1, 2, 3, 4) will. If that’s not enough, there will be another list of 21 reasons next time, and another the day after that, and the day after that…and so on until there are 2016 reasons to oppose Trump. 85. Trump supported Brexit. Donald Trump viewed Brexit as the British people taking control over their own country and borders, and putting their needs first, or so he suggested. Unfortunately, a man who somehow got a graduate degree from Wharton doesn’t seem to understand much about the economy. Apparently, business degrees don’t require that a person understand economics or global policy. Liam Fox, Trade Secretary for the United Kingdom, explained how woefully inaccurate Trump’s assumption that Brexit is all about focusing on Britain are, “In fact it was the reverse: In my view, it was about Britain becoming a much more outward-looking country.” He also saw Brexit as an opportunity to bilk money out of his supporters. Donald can’t ever miss an opportunity to do a little song and dance for a check from unsuspecting, innocent people. Sad. 86. …But he didn’t know how Scotland had voted in the EU Referendum. How does a man who was raised by a Scottish immigrant not know that one should never confuse the will of the English with the will of the Scottish? Scotland, along with Northern Ireland, voted to remain in the European Union, a decision that could dissolve the United part of the United Kingdom. It would officially change the way that Scotland and England have functioned for over four hundred years. If ever there was proof that total assimilation within a culture was a bad idea, it would be Donald Trump’s inept understanding of how Scotland fits in to the Brexit situation and into the United Kingdom in general. How do people judge this man to be competent enough to vote for? 87. Donald Trump claims that he broke the glass ceiling for women all by himself. I’ll repeat. Donald Trump claims that he broke the glass ceiling for women all by himself. He told Bill O’Reilly, noted White House slavery enthusiast, “Number one, I have great respect for women. I was the one that really broke the glass ceiling on behalf of women, more than anybody in the construction industry.” He also told O’Reilly, “My relationship I think is going to end up being very good with women.” I don’t even know where to begin. Taking credit for breaking the glass ceiling? Even if he’s succeeded in helping women in one industry, it is not his place to say that he broke the glass ceiling. I guess if he was asked who gave women the right to vote, he’d claim he wrote the 19th Amendment and got it ratified on his own. I bet he’d even claim he was up in Seneca Falls. He might as well. He is taking credit for the achievement of women and of the hardwork put into giving full-fledged equal opportunities and rights to people regardless of sex or gender, even though he fails to pay women the same as men on his campaign. He is asserting his privilege to deny women the ability to say that they earned their position and that they fought for it. To quote the great philosopher and ethicist Taylor Swift, “I want to say to all the young women out there, there will be people along the way who will try to undercut your success, or take credit for your accomplishments or your fame. But if you just focus on the work…you will look around and you will know that it was you and the people who love you that put you there. That will be the greatest moment.” 88. Trump called pregnancies of employees an inconvenience for business. Yes, he actually said, “a wonderful thing for the woman, it’s a wonderful thing for the husband, it’s certainly an inconvenience for a business. And whether people want to say that or not, the fact is it is an inconvenience for a person that is running a business” on video. So there’s proof that he feels this way. To summarize: the pro-life party is now being represented by a man who once called pregnancy an inconvience for business; and he said this after he began identifying as pro-life. 89. Trump has called Elizabeth Warren ineffective. To Trump, ineffective means that Elizabeth Warren pisses him off and doesn’t put up with his bullshit. He’s said she is the least productive Senator, that she gets nothing done, that she is weak. Elizabeth Warren should channel Mean Girls character Regina George and ask Donald, “Why are you so obsessed with me?” Because, clearly, he is. 90. Donald Trump insulted Warren by saying she has a big mouth. Apparently, Trump thinks that women who stand up to his childish behavior are worthy of scorn and deserve to be silenced for it. He’s even said that he wants to shut her up. Way to go, GOP! You’ve nominated a man wanting to silence women. Classy stuff, if you’re in the 1950’s. 91. Trump accused Hillary of only being popular because of the “woman card” and not for any other reason. In yet another example of Trump being an misogynist, he decided that Hillary was somehow getting more support because she’s a woman. He said, in a news conference at Trump Tower in April, “Frankly, if Hillary Clinton were a man, I don’t think she’d get 5 percent of the vote. The only thing she’s got going is the woman’s card. And the beautiful thing is, women don’t like her.” He claims a former United States Senator and Secretary of State is unqualified. You know, unlike a “businessman” who has never […]

2016 Reasons to Oppose Trump: Reasons #85-105


1
Another day, another detailed list of why Trump should not be President. And guess what else happens today? The Democratic National Convention starts. Yay! If you’re surprised that I’m a Democrat, you’re obviously new here. And if you’re new here, then you don’t realize that I’m posting 21 reasons every day for 99 days to show why Donald Trump should never be the President of the United States. I’m not trying to push any of the other candidates in these posts, even if I do prefer one party to all the others. Now that I’ve gotten through with the disclaimer-esque statement, let’s get on to the discussion of Trump’s failings. Let’s see, we left off with Donald Trump allowing a racist gambler to dictate how he ran his casino, so let’s go to a similar claim about Mr. Trump and his casinos for number 43. 43. When Donald and Ivana would go to the casino, the bosses would order all black employees off the floor. For a man who vehemently denies racism, he’s done a lot of racist stuff. No one knows if it was just the bosses at his Atlantic City properties who made the order or if it was an order from the boss-man himself, but Kip Brown, a former employee, told The New Yorker about the “policy” last summer. 44. Donald Trump called black people lazy and said he only wants Jewish people counting his money. In Trumped!: The Inside Story of the Real Donald Trump — His Cunning Rise and Spectacular Fall by John O’Donnell, one-time president of the Trump Plaza Hotel and Casino in Atlantic City, says that Trump once told him: “Yeah, I never liked the guy. I don’t think he knows what the fuck he’s doing. My accountants up in New York are always complaining about him. He’s not responsive. And isn’t it funny, I’ve got black accountants at Trump Castle and at Trump Plaza. Black guys counting my money! I hate it. The only kind of people I want counting my money are short guys that wear yarmulkes every day. Those are the kind of people I want counting my money. Nobody else.” Trump continued with, “Besides that, I’ve got to tell you something else. I think that the guy is lazy. And it’s probably not his fault because laziness is a trait in blacks. It really is, I believe that. It’s not anything they can control…Don’t you agree?” When interviewed by Mark Bowden for Playboy magazine in 1997, Trump responded that the account was probably true; but in 2016, he said that it was fiction. Are you starting to get the feeling that his claims of not being racist are a little disingenuous? 45. Trump was sued for lack of diverse employees in 1996 at a riverboat casino. Trump was sued by 20 African Americans in Indiana for failing to hire mostly minority workers for a Lake Michigan riverboat casino. Trump had promised that 70% of his workforce at the floating casino would be made of members of the minority community and 52% would be women. The lawsuit also alleged that he hasn’t honored commitments to steer contracts to minority-owned businesses in Gary. 46. Donald Trump is supported by Vojislav Šešelj. Admittedly, in late May 2016, Šešelj was acquitted by the Hague of crimes against humanity and war crimes in Croatia and Bosnia in the 1990s, but that doesn’t make his January endorsement of Trump any more acceptable. His acquittal was blamed by the ICTY’s judges on the prosecution causing confusion over his role in the ethnic cleansing of Bosnia. If Trump is being openly supported by people who are linked to ethnic cleansing and is refusing to disavow their support, then what does that say about Mr. Trump? 47. Trump is also supported by the Daily Stormer, Richard Spencer, Jared Taylor, Michael Hill, and Brad Griffin. If Donald Trump was a shepherd, white supremacists would be his flock. It’s not a coincidence that white supremacists want Trump elected. He “speaks to” them, their hatred, their ignorance. The Daily Stormer’s publisher, Andrew Anglin, announced the support of Trump for his anti-Muslim plan with statements like “Heil Donald Trump — THE ULTIMATE SAVIOR” and “Make America White Again!” Anglin also appreciates that Trump has spoken negatively about Mexicans. Richard Spencer, who is “dedidcated to the heritage, identity and future of people of European descent” sees Trump as the candidate “bringing identity politics for white people into the public sphere in a way no one has.” Spencer said, “Identity is the most important question to answer. Who are we racially? Who are we historically? Who are we in terms of our experience? Who are we in terms of our community?” He appreciated that Trump “seemed to understand and echo many of his group’s ideas intuitively, and take them to a broader audience.” He also pointed out that “there’s no direct object” in Trumps’ statement relased disavowing David Duke’s endorsement. Spencer also believes that Trump will encourage more people to turn toward his beliefs. And while he used to believe that Trump might not share the beliefs himself, he now believes that “Trump thinks like” him and that that’s why people like him love and support Trump. Donald #Trump makes us feel alive. pic.twitter.com/KkGoimK52T — Richard B. Spencer (@RichardBSpencer) July 22, 2016 We The Right-Wing Now. #GOPinCLE #Trump #BlackLivesMatter pic.twitter.com/hN9wX5JE7q — Richard B. Spencer (@RichardBSpencer) July 22, 2016 Jared Taylor was featured in pro-Trump, pro-white, anti-Muslim robocalls in Iowa by a super PAC. Taylor also appreciates Trump’s anti-Mexican rhetoric and said, “Ordinary white people don’t want the neighborhood to turn Mexican.” Trump failed to distance himself from the calls made on his behalf and even suggested that his supporters had “legitimate anger” behind their actions. Taylor has never supported a presidential candidate before, but he believes in Trump and thinks “someone who wants to send home all illegal immigrants and at least temporarily ban Muslim immigration is acting in the interest of whites, whether consciously or not.” Founder of the hate group League of the […]

2016 Reasons to Oppose Trump: Reasons #43-63



Well, I never mentioned how the rheumatologist appointment went. I guess that’s because it happened almost exactly as I a predicted. It was bad. How bad was it? It was so bad that I wish I could time travel to the past and let Rodney Dangerfield use it as material for some of his “How bad was it?/It was so bad” jokes. Everything was fine until the doctor came in. He half-listened to my complaint, said that anhidrosis isn’t a symptom of anything he treats, and told me that all that he ever saw me for was “loose joints” and pain. I told him that the family doctor said she thought my “loose joints” and lack of sweat were related. He said no. I said she thought he should treat it because he treats connective tissue disease. He went into a long rambling session about how my family doctor meant that he treats autoimmune diseases and that “loose joints” aren’t really a connective tissue disease because they don’t involve the immune system. He said that “loose joints” are a collagen issue and that they only cause problems in the joints themselves. I tried correcting him on his ignorance, but when I did, he repeated his rambling.  My mom asked if it could be from the Sjögren’s/UCTD. He said it was possible, but that those were connective tissue diseases & I didn’t have connective tissue diseases. She mentioned Mamama had Sjögren’s and he said it was possible that I inherited it from her. That “Sjögren’s is genetic” part of his ramblings was almost verbatim from the ramblings he made that time seven years ago when I tested “positive” for the antibodies related to Sjögren’s. He looked in my mouth and said it was dry. He asked about my eyes & I told him that the ophthalmologist had done the paper test years ago. He asked about the results and I practically rolled by sore, dry eyes at him as I told him that they’d been dry. He said he would test me again for Sjögren’s and that if it was positive he might consider putting me on Pilocarpine.  He then said something about Pilocarpine costing $95/month and insurance never covers it. You know, so I wouldn’t expect a prescription for it. The funny thing is that I knew he was bullshitting on that part. You see, I had been given a prescription for a medication called Salagen given to me by the UAB doctors a few months ago. They’d noticed my mouth dried out too much for me to talk. Salagen is the brand name of Pilocarpine. It costs $1.20 for 120 pills; 120 pills is a monthly supply. I left the appointment feeling like the air had been sucked out of my lungs. By the end of the appointment, I didn’t know whether I was pissed at him or myself. The longer he rambled, the more I felt myself retreating into the “doesn’t speak up for herself” zone. I started feeling incompetent. I started feeling like maybe I was the one who was uninformed.  But my family and my therapist wouldn’t stand for that thinking.  I’m not the one who: Doesn’t understand that connective tissue disease is an umbrella term for many kinds of diseases.1 Doesn’t understand that many autoimmune and non-autoimmune diseases can cause sweating to cease.  Doesn’t keep adequate patient records.  Doesn’t listen to the patient or their family.  Failed to prepare or educate myself before the appointment.  I’m not the incompetent one. He is.  My mom said I need a new rheumatologist. When I told Debbie about the appointment & about the phone calls, she said I need a new rheumatologist. Guess what I discovered in my search got rheumatologists who take my insurance?! I’m pretty much stuck with a doctor who doesn’t know what the hell he is doing.  I hate the phrase “fuck my life” but it almost seems appropriate here.  Photo credit: C_Dave via Visual Hunt / CC BY-NC Joint Hypermobility Syndrome & Ehlers-Danlos are connective tissue diseases. ↩

Call Me Janet the Divine. On Second Thought, Don’t. 


Dear Amanda Lauren, It still disgusts me that you were so cruel in your @xojanedotcom piece about someone you once considered your friend. Not just to her, but to her family, to her true friends, to people with schizoaffective disorder, to the mental health community in general, and to the people who have friends or family with mental health issues. To claim that you were doing it to boost awareness is frightening. You didn’t boost awareness of anyone or anything except yourself or your hunger for fame. You clearly crave drama. Your other pieces seem to indicate this, as did, let’s not mince words, cyberstalking your former friend. You didn’t need to see what was being said about you. You chose to either because something in you felt more alive with this young woman as your adversary or you felt like her hate justified some level of hatred you have for yourself. The Internet allows people to give into self-destructive urges like that. You should work on that because it will not only be potentially harmful to your career, but it will push away people who make up your support system. You should apologize to everyone harmed by your words, especially the family of your friend. I hope they didn’t read your piece, but if they did, then I can only imagine how that impacted them. Did you even think about them? Did you bother to ask permission to memorialize their loved one as a lost cause? Or were you too busy concentrating on the fame and drama this kind of story might get you? Whatever your reason, it was the wrong thing to do. You should be ashamed not of sharing your name but of hurting people so viciously. You shouldn’t try advocating on behalf of people who have chronic illnesses who you see as being undeserving of life because they’re sick. Your words were not wanted and your advocacy is unneeded. Apologize. Learn from your mistakes and don’t do this again. The attention you got was not worth it. from Destigmatize Me via IFTTT

Dear Amanda Lauren