health


Last Monday, I moved my appointments with the hematologist up. The lab tests were done on Tuesday afternoon. My actual visit with the hematologist is tomorrow. Well, I assume it’s with him. It could be a physician assistant or a nurse practitioner. I’m actually worried now that I’m not really anemic. Sure, my skin is looking a bit more gray than it usually does, I’ve been covered up under a blanket on 80°F+ days, I crave protein like a person on a planet made of lettuce, and I get winded by just picking up a book,1 but I could just be crazy. I mean, we all know that I’m cuckoo for Cocoa Puffs. What if I’m just going further down the rabbit hole that is my brain? That could be all it is. But I know that this freaking out feeling that I have right now is the same sort of thing I always go through when I’m actually sick. I know that I have a tendency to worry about things that aren’t worth worrying about, but I’m also pretty damn certain that my anemia is something that is worth worrying about. And if I’m not in an anemic state, then I need to figure out why I’ve felt so shitty for so long. So if I’m not anemic,2 I need to know that. But I know that it is pretty unlikely that I’m not anemic right now. According to labs, my serum iron has headed downward at a steady rate. That rate was meant to hit the anemic stage in December, but I had two periods over the past several months that lasted at least 2 weeks and were extremely heavy. That would have sped it up slightly. Medically, the diagnosis is in the bag. Maybe I’m just worried that it’ll be low and I’ll have to get an infusion and those scare the shit out of me. Ugh. I try not to freak out like this, but I’m like sitting here shivering3 trying to convince myself that I’m either not nuts or totally nuts when it comes to this very issue. Sometimes I hate my brain and my body. It feels like they team up to make me miserable. And in the past 32 years, they have gotten quite good at accomplishing their goal. Photo credit: euthman via VisualHunt / CC BY No, really. ↩And I probably am. ↩It’s 76°F outside right now. ↩

What If I’m Just Nuts


After I nearly fainted after getting out of the pool, I quit exercising. It’s not a permanent thing. I will start back after I get cleared by my doctor. That will probably be after an infusion or two. Between the wooziness that day and the constant shortness of breath, I just can’t justify the risk right now. And somehow I feel like I’m a failure for not being physically able to do this one little thing. What’s that about? I know my body has limitations, but I don’t like what those limitations mean. I don’t like that my body seems to be fragile compared to most. I know, I know. Being disabled means that there are things that are more challenging to me than to able-bodied people, but knowing that doesn’t mean it’s any easier to deal with.

I Haven’t Been Exercising Lately



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


The Long Shadow of Small Ghosts: Murder and Memory in an American City by Laura Tillman My rating: 3 of 5 stars I don’t know how to explain my feelings toward this book. It is an extremely compelling story, but the writing quality is poor. There seemed to be no real outline or backbone to it. The purple prose only highlighted this flaw, as did the repetition of unimportant things and the lack of refreshers given for details that seemed more important. If all you knew about the case was the manner in which Julissa, John Stephon, and Mary Jane died, then it would seem impossible to feel bad for John Allen Rubio and Angela Camacho, but what happened to them within the justice system is awful for other reasons. This is a case where a man with a severe mental illness (paranoid schizophrenia) and an intellectual disability (IQ in the low 70s) and a woman who had a shared psychosis with this man because of her own intellectual disability (IQ in the 50s) end up imprisoned, and, for him, end up on death row, but the writer is busy talking about superstitions & personal fears. It’s almost like she doesn’t completely perceive the gravity of the situation, the level of injustice that’s going on. As lovely as it is to learn about regional cultural beliefs, I was more concerned about the fact that this man who should be in a hospital will probably face lethal injection. The writer could only view this as horrible once she met Mr. Rubio, but it seems like anyone with a basic sense of compassion would figure out after learning about his background. Instead, she was oblivious to it, which made her seem callous. It made the whole book feel callous. Also, the stalking of Ms. Camacho’s family was a bit disturbing. I understand she felt that she needed to hear from them for her newspaper article and her book, but her behavior was quite creepy. I’m surprised that they didn’t issue a restraining order after the second or third time she showed up outside the woman’s front door. The writing honestly reminded me of what you’d find in an essay by a bored, uninformed student who waited until the last minute to do an assignment. I have a hard time believing that this is something the writer was encouraged to get published, at least in its current form. I have no doubt that she has talent, but the fixations on pointless details within the work are distracting and annoying. I wish she had explained more about Rubio’s mental health than how a superstitious grandmother convinced her to throw away a perfectly good pair of tennis shoes. This wasn’t her memoir. This wasn’t even a memoir for the building. It was an unfocused work of nonfiction that was rather disappointing. View all my reviews

Review: The Long Shadow of Small Ghosts: Murder and Memory ...



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


if you’re considering abortion or know someone who is, you’d better read this. life is precious! i-want-to-die-being-me: This is terribly painful to read. But it will change your view on life forever. reblog this if you agree! I’m reblogging this, but I definitely do not agree.  If anything, it hardens my opinion that women have the right to decide what happens in their own bodies.  If that is a real case, then that husband is a dick.  Plain and simple, he’s an asshole who is clearly trying to manipulate others. Now, I checked out your blog, and I saw some questions had been asked after you made the post.  You didn’t exactly give a response to them, though. You were asked the following: Why be pro-life? I mean, do you know what hyperemesis gravidarum, pre-eclampsia, and ectopic pregnancies are? Do you know how physically hellish pregnancy can be for a woman? Do you know all of the different ways that pregnancy can cause mental and emotional distress to a woman? Do you know how emotionally scarring it can be to give a child up for adoption? Or do you just not care about any of that, which proves that your views on this issue are incredibly hateful? I bolded the part that you seemed to avoid in this response: I am sorry to offend you. However, I firmly believe that a woman shouldn’t place herself in a position where she can become pregnant unless she is willing to take care of the child or give it up for adoption. I understand that in cases of rape, pregnancy can not be avoided. However, abortion is still murder of a child no matter how you look at it. I’m guessing that since you didn’t realize that those issues are related to maternal health and not the health of the offspring, that you might not realize what they are. Hyperemesis gravidarum is a severe type of morning sickness. Because of the unrelenting nausea and vomiting, the mother is unable to maintain adequate intake of food and fluids. This can cause renal failure, subarachnoid hemorrhage (a “brain bleed”), splenic avulsion (torn/injured spleen), rhabdomyolysis (the muscles break down causing the damaged muscle cells go into the bloodstream, which causes kidney failure), pneumomediastinum (physical trauma that causes air to leak into the chest cavity), Wernicke’s encephalopathy (lack of muscle coordination, confusions, impairment of memory, eye paralysis; without quick treatment, the patient can require permanent inpatient care), malnutrition, jaundice, Mallory-Weiss syndrome (tears in the junction of the stomach and esophagus), hypoglycemia (long-term hypoglycemia kills the kidneys and can cause brain damage), atrophy (wasting away), coagulopathy (causes prolonged/excessive bleeding), and central pontine myelinolysis (caused by severe damage to the nerve cells of the brain stem; only a third of people achieve significant recovery). This was the disease that is believed to have killed Charlotte Bronte. Preeclampsia is a type of hypertension that occurs in pregnancy. The earlier it happens, the more likely it is to be deadly. Cerebral hemorrhage can occur and can kill the mother. Breathing difficulty happens. The retinas can detach. HELLP (hemolysis, elevated liver enzymes, lowplatelet count) syndrome can occur, leading to seizures, coma, rupture of the liver capsule, renal failure, pulmonary edema. Ectopic Pregnancies are when the fetus has become attached outside of the uterus. It can cause rupture, which leads to death. As you see, each case can lead to maternal death. The questions weren’t about what health issues the fetus might incur. The person was trying to show you that pregnancy is extremely dangerous and can kill the mother. So, now I have to ask, how do you feel if the woman’s life is endangered by the pregnancy?


5
Ugh. My throat hurts. It’s been aching for a few hours now. I hope I’m not getting something. That would really suck. It’s probably just allergies or something. Nothing to get really upset about. I’ve spent the past couple of hours updating my Quote Book. I also changed my random quote script so that it displays quotes from the Quote Book. There should be a better variety of random quotes now. I also made a special layout just for the Quote Book. It features Jennifer Garner from Alias. If you have a favorite quote that I haven’t listed, then you can always add your favorites. 🙂 I have more I’m planning on adding, but it can be quite exhausting (for my hands) to sit and type up a bunch of quotes. Oh, I’ve been accepted at Alabama A&M. That’s good, since I’d already decided I was going to go there instead of UTC. I just have to send in some immunization stuff so that I won’t have to have all of my shots re-done. It’s been 10 months since I had my gastric bypass surgery. I’ve lost over 90 pounds so far. I still have a lot to lose. I wish I could lose it more quickly than a pound a week, which is what my weight loss rate has slowed to. I miss how right after the surgery, I lost like 21 pounds in two weeks. I’m sorry that this is such a boring little blog entry, but I don’t really have anything spectacularly interesting to say. Plugs: Esther, Jen, Katie, Tara

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