Anemia


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


Well, I’m anemic, but I’m not. It isn’t my iron that’s low.1 It’s my B12. It’s around 300 pg/mL right now, which is low for most of the world,2 but it’s not low according to American standards.34 Fortunately, the hematologist’s office realizes that those standards are messed up and that a person who takes monthly injections of B12 shouldn’t have a level that low. They also realize that the gastric bypass surgery and my family’s predisposition to the B12 deficiency makes me more likely to have issues absorbing it and maintaining high enough levels. So now I get to re-load on B12. That means 1 shot a day for 7 days, then 1 shot a week for 7 weeks, then 1 shot a month like I’ve been doing for years. Fun, right?5 The nurse practitioner also wants me to be checked out by a pulmonologist6 and, possibly, a cardiologist.7 She definitely wants me to undergo a pulmonary function test. She said that it could be that when I fell  at the pool several weeks ago, the water that I breathed in may have caused some issue in my lungs that I’m just not over yet.8 The other possible thing was the day that my dad put Clorox in the toilet. I didn’t think and I peed in a toilet bowl full of Clorox which led to a rather enjoyable release of chloramine gas.9 I coughed for days afterward and felt like something had scorched my lungs and throat.10 Well, technically, there are other possible reasons for my breathing to be so rough. I do have a history of severe asthma and severe allergies. Vitamin B12 deficiency itself can cause shortness of breath, but it’s a rare occurrence when it happens. Of course, rarities are my specialty.11 I need to go shoot up12 with some cyanocobalamin.13 The magic of birth control pills. ↩The low end of normal elsewhere is around 500 pg/mL. That’s where symptoms like fatigue, pale skin, dementia, etc. start occurring. ↩The low end of the American range is 200 pg/mL. ↩Bad standards. Very bad. ↩If you say yes, then there’s something wrong with you. ↩Lung doctor. ↩I guess because I have ongoing issues with tachycardia. Shortness of breath is linked with tachycardia. ↩Face-planting in the water is dangerous, yo! ↩Yeah, science, bitch! ↩A sane person might have gotten checked by a doctor after that experience, but I’ve never been a sane person. ↩As are face-plants, social awkwardness, and gourmet cooking; a lady must have an entire repertoire of mad skillz. ↩My thigh muscle. ↩Don’t call the cops. It’s totally legal. ↩

I’m Not Crazy, I’m Just a Little Unwell



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


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 



A few days ago, I decided to give in to my curiosity about the lab results my super-awesome1 rheumatologist ordered when I went in for my sweat hiatus.2 The checkout slip had my login details for that office’s EMR on it, so I went to check it out.  Aside from finding out how truly abysmal the office’s record keeping skills are—my medicine, surgery, & allergy lists were inaccurate, he claimed he prescribed my Effexor, he was consulting with a doctor I haven’t seen in 6-7 years about my case, he had 4 visits total listed, even though there have been at least 12-16 visits, old lab reports were missing, old prescription data from drugs he’d prescribed was missing—I found out that he had a “plan of care” that revolved around telling me how fat I am3 and how I need to start exercising.4 I also found out that he thinks I’ve been on my Flexeril too long. I’m fairly certain that I pointed that little issue out about two or three years ago when I asked him to try something else because the Flexeril had become ineffective. But hey, it’s just my body, what do I know?  I would claim that I felt incredulous,5 but I can’t fake my disbelief over his ridiculous & somewhat terrifying antics. Seven years of this same old bullshit just wears a girl out.6 But this isn’t supposed to be about his incompetence. This is supposed to be about lab results. Tell me what your first reaction would be to these results.  Notice anything odd about them?  There are no units of measure listed on the ANA test. And the way the “normal range” section is phrased sounds like anything above 120 or below 100 is bad. Think again.  I had to search for an explanation of these results harder than a Disney prince has to search a magical forest for a barely legal future wife to take home to his dysfunctional family.   And I found one. Sort of.  Apparently, the range should read like this: Negative: Below 100 Equivocal: 100-120 Positive: Above 120 So I tested positive for the ANA Qualitative Test, the SSA (Ro) antibodies test, and the Scl-70 test. That could indicate: Lupus, Sjögren’s, Scleroderma, MCTD, UCTD, etc. It could also be a fluke because truly healthy people can have positive readings on these tests, and people diagnosed with them can have negative ones. So I’m not worrying too much about that.  I’m a bit more concerned with my CBC because my platelet volume was almost too low, while my platelet count was close to the upper limit. Combine that with an increase in red blood cells and you’ve got a warning that the anemia isn’t far from striking. I guess that explains why I’ve felt more down & out, and why my body has gone into the “I’m dying” feeling that accompanies the anemia. I’m going to get the rheumatologist to forward that part of the labs to my hematologist, to make sure waiting to the end of the year for my tests + infusions is still safe. I really dread the infusions, but they’re part of my life now. I will just have to deal.  Anyway, you know how I restarted my Pilocarpine/Salagen after the last rheumatologist appointment. Apparently it’s started helping because I have, drumroll please, started sweating. You never really can appreciate sweating and its purpose until you’ve gone without it. When I noticed how sweaty I was getting, I was ready to do backflips, except that I can’t do them.7 Another thing that I noticed is my mouth hasn’t been as dry, which is really strange because I’ve had dry mouth issues since I was a child. But I’m thankful for the saliva, too. It’s amazing how little things that most people take for granted or get annoye or disgusted by can make me want to do a happy dance.  at forgetting ↩The thing that’s potentially fatal, but that my rheumatologist is all blasé about. Who needs sweaty pits and tits in 90-100°F humid, summertime-in-Alabama weather? Oh, right, everyone. ↩16 points of a 23 point list ↩Because telling a doctor that you’re concerned that a 45-minute, 1.8 mile walk in 85°F+ didn’t cause you to sweat and that the overheating was limiting your exercise choices doesn’t get the message across that you’re actually exercising. ↩Not a Disney movie title adjective, though it could be. ↩A girl has no name. ↩I never could, unless I did them accidentally while falling. ↩

Bad Positives


As you may have figured out, members of my family tend to be a little bit challenged in basic coordination. Put simply, if falling on our asses or into the asses of other people1 was an Olympic sport, we would win it every four years. Hell, we could win the summer and winter versions of it, so it’d be like a medal-palooza every two years. Other clumsy families would be so freaking2 jealous.3  Wait. What was this post supposed to be about? Oh, yeah.  On Friday evening, Nana fell at the nursing home. They called us at seven o’clock on Saturday morning.4 There were assurances that she seemed to be doing fine. All that they thought was wrong was some bruising, which is another Olympic sport my family could dominate in.5 Nana was still able to get up and move around.  They weren’t worried. We weren’t worried.  But Nana’s BFF was worried. Mary didn’t think her leg seemed okay, so she called my mom on Tuesday evening. Before my mom could call and let the center know that Nana’s friend was worried, the nursing home called to tell us that they were doing a Doppler study on her leg because (she started complaining about it hurting worse so) they thought there was a blood clot in it.6 But there wasn’t a single blood clot in her leg. Don’t start cheering about that because I’m being really literal. Nana had two blood clots in her femoral vein.7 Now, Nana is going on Xarelto, so obviously… Nana is going to be the next major pro-athlete in the commercials.  I’ve already shown just how much my family could kick ass if everyday things were Olympic events, so the pharmaceutical companies have got to call us, right? Right.8 I’m not sure if telling my doctor that I have yet another relative with blood clots would be a good idea. She may want to confiscate my norethindrone. That would be awful for everyone.9 And it would be a bloody mess. Literally.10 But I guess it’s a case of better red than dead.11 Though I guess it could end in my death via anemia or exsanguination.12 Yeah, so…bleh.  But Nana’s totally okay, except for she’s on total bed rest until the clots dissolve.13 Another story for another day. ↩Did I just do a faux obscenity? God, I hate those. I should’ve just said fucking. ↩Humble bragging is losers. ↩No words. ↩Be jealous. ↩Hey, look at yet another thing we excel at. ↩Go big or go home, amirite? ↩Given how wackadoodle some bloggers have been lately, I feel the need to point out that I don’t believe this crazy shit. Nana does have a clot. My family does have a history of those, easy bruising, and falling. ↩Don’t make me take my earrings out. ↩TMI, sorry. ↩Without the pro-Soviet or pro-Badgers implications. ↩Say that word ten times fast. ↩And I’m okay except my nightly Flexeril is making me a little weirder than usual. ↩

A Professional Athlete in the Making