Disability


Today was my last daily injection of Vitamin B-12. Now I’m going to weekly injections. Eight weeks from tonight, I’ll be back on monthly injections. So far I can’t tell that the shots have done anything. I only know that every time I give myself a shot, I feel more exhausted. It’s a paradoxical effect, but it’s one I’ve always had with B-12. My breathing is still crappy. My heart rate is through the roof. My dizziness and tendency toward disorientation has gotten worse. I was dizzy for about 3 hours last night after hearing a cowbell effect on a Mississippi State sports story; I wasn’t dizzy before the effect played. Sounds have often thrown me off a bit, but never quite that bad. I still have a couple of weeks before I’m supposed to go to the pulmonologist. Keep your fingers crossed that it won’t get worse. Speaking of appointments, tomorrow is dad’s appointment for the neurologist. Since his MRI, EEG, Doppler, and standard memory tests all came back normal, he’s convinced that he’s not got dementia. He thinks it is all just regular age-related memory loss. I’m afraid the doctor will feed into that. I don’t think he’s told him how dizzy he gets or about his headaches. I don’t know if he’s told him just how bad his memory loss has been. I don’t know if he’s told him how angry he’s gotten. I know that there is something wrong with him and I don’t know what it is. And I have this horrible feeling that it’s only going to get worse.  

A Bruising Hiatus


1
If you’ve been following me on Twitter, you know that I am currently rather pissed at the Huntsville CBS affiliate, WHNT, for their planned special tonight called the Dark Side of All Hallows’ Eve. In the ads for their story talk about Huntsville’s police department once having a special occult crime division. The ads also feature images of Jeffrey Franklin and comments about the crimes he committed on March 10, 1998. Jeffrey killed his parents before trying to kill three of his four siblings on that night. He also attacked the best friend of his 14-year old sister. I can tell you a lot about the night. More than a lot of people can. His sister was my friend. His sister’s friend was also my friend and on Yearbook staff with me; she talked about that night in class. My mom was the person who carried the medical records of his sister to the hospital. She stayed there until my friend was in the ICU. We went back to the hospital on a regular basis until it was time for them to leave town. From the start, Jeffrey was painted as evil by the media. Even when the evidence came to light that he had 10 times the normal dose of Ritalin in his blood twelve days after the crime.1 Even when people started mentioning that he was mentally ill. Even when the state of Alabama thought he was mentally incompetent from 1999 until 2001, and even though the state of Alabama has had him in the mental healthcare unit of the prison since his sentencing began, instead of in general population, he has been portrayed as this supernatural killer. That kind of stigmatizing attitude is damaging to the whole community and it needs to stop. Personally, I’m tired of reliving that night. It’s been almost twenty years and local news outlets are still pushing it. They keep trying to make a buck off of the suffering of my friend’s family. They keep trying to profit on the suffering of the people I grew up with, of the choir that we were in together, of me, of my mom. This has to stop at some point. I know that the story was shocking and gruesome and that it sticks with people. It’s stuck with me, too. At a certain point, enough is enough. I wish he hadn’t made the choices he did that night. I wish that a lot of things were different about that whole situation. But forcing us to go through it over and over is cruel. He had been in jail since the night it occurred. ↩

And then I fell down yelling, “Make it go away!”



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


Dad had his MRI about twelve hours ago. His other dementia-related tests are next week. I guess this was his first MRI because he had to tell me all about the machine. He asked if I’d ever had one,1 which threw me since he’s driven me to most (if not all) the ones I’ve had.2 But I guess I have to get used to that. He might remember them fine tomorrow or next week. I never really know what he will remember or when he will remember it.  He and mom also had to stop by Legal Aid to get help with another attempt at a garnishment by Bank of America of their Wells Fargo account. This time by the wonderful lawyers at Spina and LaVelle. I guess they don’t realize that it’s still against the law to garnish Social Security payments. Also, they left the writ in the mailbox (in an unmarked, unstamped, unmailed envelope)—which breaks a few federal laws. I don’t think the judge will be pleased with them.  I know I’ve had at least four. I think I’ve had five or six. ↩Since I can’t remember, I guess I shouldn’t judge. ↩

What’s In Your Head



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


I set up new crowd-funding pages to raise money for home repairs and replacing my dad’s car. We’ll be getting some money from selling my grandmother’s house, so we’ll be able to cover some of the costs with that. I actually set up fundraising pages on three different sites (GiveForward, GoFundMe, YouCaring) because I know some people either don’t have accounts on those sites or they are boycotting them; and if you would rather just go through PayPal or Square, those options are also available. I just thought giving people more options might help raise the money faster, which will speed up the ability to get the repairs done, replace dad’s car, and get insurance on our house again. So far I’ve raised $20 which will definitely help. And I’m incredibly grateful for that donation. This is the description/explanation that I put up on the pages: My parents and I are on disability, which puts us on a very fixed income. Unfortunately, that fixed income makes it difficult for us to afford to do needed repairs on our house and to afford to replace the vehicle we’d used to go to doctor appointments. The house needs a lot of repairs. It needs to be more accessible for my mom who has a severe Vitamin D deficiency (my whole family has this deficiency) that has progressed to a point where she’s developed osteopenia, a condition has caused her to break bones almost every time that she falls. The fracture risk is even higher for her because she, like me, also has Ehlers-Danlos Syndrome, which increases a person’s likelihood of developing fractures and other injuries involving connective tissues. She’s on special supplements for kidney failure patients who are Vitamin D deficient, but the deficiency continues. The entrances to the house need to have permanent steps added in or a permanent ramp to make it easier for my mom to enter the house. This is especially important considering that her last fracture, hospitalization, and surgery (a surgery that the orthopedist thought would end in an amputation of the lower leg), as well as her ongoing treatments for blood clots and infections, were due to a fall because height difference between the porch and door. Our home is also in need of plumbing and electrical repairs. (We have aluminum wiring; that wiring caused a pretty bad fire for us about 20 years ago.) We also need our roof and siding replaced, doors replaced, flooring replaced–in most rooms, the “floor” solely consists of the concrete slab laid as the foundation, some broken windows fixed, and cracks in the walls repaired. We need the wiring fixed so that we can get the dryer working again. We need most of our plumbing replaced or repaired to prevent/end leaks. (Every sink leaks, the toilets leak, the bathtub has a crack.) Our dishwasher hasn’t worked since at least 2012–it floods the kitchen if you attempt to use it–and needs to be replaced as well. Our stove needs to be replaced. We had to disable the back two eyes after they both “shocked” me while I was cooking. The oven itself doesn’t work properly either. We lost our home insurance policy in 2012 because the roof needed to be replaced and we couldn’t afford to get that done. We will not be able to get a new policy until we have fixed the roof and most of the other issues. If all of that wasn’t enough, my parents were in a car crash on August 23, 2016. A teenager ran a red light and hit the driver’s side of my dad’s car, then the driver’s side of the car in the next lane. Dad’s car was 17-18 years old, so it would have cost the insurance company more to repair the car than to declare it totaled. We have my grandmother’s car, which is even older and has had a few weird issues of its own over the years. We need to raise money to replace the old car to make sure that we have a car to drive to doctor appointments & other places. There’s plenty to be done and not enough to do it with, so if you could help in anyway, it would be awesome. If you can’t afford to donate, please consider passing the link along or, if you happen to know of an agency or group that does these repairs or provides other services for people on fixed incomes, please pass that on to me. If you’re able to help, I would appreciate it. If you can’t donate, but can share the link, I would appreciate that as well. If you know of any organizations that could help, then I would love that. And if you have any questions, then I’ll answer them.

Crowd-Funding Home Repairs



I’m almost positive that my anemia is back, but I haven’t called the hematologist to get an earlier appointment. I don’t want to waste an appointment if I’m wrong. Of course I’d like to be able to do things like carrying a package from the front door to the love seat without being to winded to talk. Or workout in the pool without having to sleep away most of the next two days. Or not be über-bitchy because I feel so exhausted and shitty because my blood has gotten all low-quality on me. But I always worry that a doctor will think I’m just trying to get attention. 

Now I’ve Got Bad Blood 


After I got a letter last week telling me that I couldn’t get my replacement Social Security card with the information I provided, I decided I would go in person. I still couldn’t get it. I gave the extremely condescending guy insurance cards, my EBT card, my photo voter ID, my expired permit, a statement from the doctor’s office I had just left, my library card, and most of my credit cards. None of it could be used. They have to “make sure” I’m really me.  I asked why they couldn’t consult with the ADPH to get proof of my ID from them, since they issue birth certificates. He told me they don’t issue them. Bullshit. He then said that that would basically be completing an errand for me.  They wanted me to go back to a doctor and get them a certified copy of my medical record because “THAT would be easiest.” I asked how they expected me to pay for it. They shrugged. I asked why they thought buying my medical record so I could prove who I am to get a free card so I could then turn around and prove who I am to get a license.1  I tried to explain why paying $30 to get the record was not a reasonable idea for someone who only receives around $700 a month. I asked him how much he made, but he said I shouldn’t try to make this a personal issue. I don’t think he understood that $30 dollars2 is around 5% of my monthly budget. Expecting me to spend 5% of my monthly budget to get a document so that I can get another document so I can get an ID to prove who I am is personal!  I asked to talk to his boss. She was worse. She “explained” that they needed more biographical information—which only includes things that don’t change—including, in their words, name, date of birth, parent names, age, hair color, eye color, and sex; but it doesn’t include address because that can change. Apparently, they are unaware of name changes, adoption or foster care, birthdays, hair dye or aging, contacts or health condition, and being transgender.3 I understand why they restrict what they can take, but they don’t seem to understand that they’re making a vital piece of identification inaccessible for lower income people. They don’t understand that expecting someone who can’t drive and can’t work to provide information from the DMV or from their employer is laughable. Things that may be easy for one person to provide are difficult for people who lack money and access.  Life isn’t easy for anyone, but it’s harder when you have more obstacles preventing you from accessing even the most simple of things.  Photo credit: akahawkeyefan via VisualHunt / CC BY-NC-SA The guy then suggested I go get a new ID from the DMV. Apparently, he didn’t understand that having a social security card is a basic requirement for the DMV. ↩It’s the maximum that UAB will charge for records. If I was only on Medicaid, they couldn’t even do that. ↩When I pointed out a person can change their sex, she said that I was misunderstanding her words. ↩

Who Am I?