I keep trying to write a post about things happening this year, but since all of them are depending on other things going right, I honestly have no idea how this year is going to go.
I sincerely hope that all of you have more certainty, and that your collective year is full of good things, no matter what “good” means to you.
An alarming number of people seem to think that my hysterectomy was the solution to all of my medical woes. (Alarming = nearly 10 that I can count off the top of my head.)
Considering the hype that was placed on fundraising, I suppose I shouldn’t be surprised.
I will admit that not having cramps, bleeding, and dependence on painkillers just to function is a huge perk.
However, the surgery was just something I could fix RIGHT THEN, not the be-all and end-all of the problems I face.
My Lyme disease caused my uterus to break. My uterus wasn’t the keeper of my Lyme, and actually made up a relatively small percentage of my symptoms…it’s just that those symptoms were very dangerous and needed to be addressed quickly.
For example, the cramps were so overdone that my vagus nerve was getting damaged. A damaged vagus nerve leads to things like gastroparesis, which means your stomach can’t digest food (remember the “funny” story of the man that made alcohol in his gut because he wasn’t digesting food quickly? that’s a severe case of gastroparesis.), and also affects your heart rate.
My left ureter, it turns out, was literally on the wrong side of my body. My intestines weren’t functioning properly because they were attached to my uterus by what turned out to be a small ball of isolated endometrium and scar tissue.
This is completely aside from the large amount of blood loss I suffered each month, which, when you look up the symptoms of babesia (which, yes, it’s true I didn’t know I had it at the time, but it’s a dangerous combination), is horrifying. Hemolytic anemia is a possibility, and with many women suffering from anemia from monthly blood loss, anyway, my risk was increased. It’s likely that if there weren’t problems with scarring and whatnot, anyway, I would have had either an ablation or a hysterectomy later in life due to these issues, anyway.
I’m not being snarky – these assumptions have been peppered over the past couple of months (with even family members expressing their hope that I will be “cured” after the surgery, after I’ve gone into an uber-TMI-fest with them about Lyme), and since I was already updating about other things, I figured this was as good a time as any to confirm for sure what I’ve said to people individually: My surgery, as amazing as it was, was not the cure for anything but my horrible periods and pelvic pain.
I’m extremely grateful to everyone for their help with paying for the surgery. I haven’t said it a lot because it’s still a little overwhelming.
I will continue to educate as I can – and this is just another instance where I suppose I needed to clarify after the fact.
(I’m going to give my usual DON’T OUT YOURSELF speech, here, because people like to jump on perceived stupidity, so if you were one of the people who were confused about whether the surgery would cure me, I appreciate your concern, and if you want to email me, feel free, but don’t comment here unless you’re prepared to receive comments from folks who may not be particularly kind about it. Also, if you think I mislead you, you are sorely mistaken, and I’ve never said that my surgery would help anything except my bad periods and pelvic pain – there was also a fear of cancer, which was thankfully disproved. So no angry comments, either. I’m not calling anyone stupid, and I’m not encouraging any else to call folks stupid, either.)
I’ve done more typing today than I’ve done in the past month, I think. Lordy.
It appears that most of the infections from ticks start with the letter “b” – borrelia is Lyme, babesia is a type of protozoa, and bartonella is more commonly known as “cat scratch fever.”
Then erlichia comes in and screws up the whole alliteration, but that’s beside the point.
I had a follow-up with my LLMD yesterday, and apparently it’s come to light that babesia and bartonella are very likely co-infections that I have.
I was diagnosed in the exact same way I was diagnosed with Lyme: I showed symptoms, and the tests commercially available suck ass. There are several strains of each (as in, over 20…which WHAT THE FUCK, because DAMN), but they only test for a few. So while it’s not so much a diagnosis of exclusion, it’s a diagnosis of “huh, there’s not really anything else it could be, is there? those are some weirdly-specific symptoms, yo.”
With Lyme, the problem is the diseases hiding, and that’s also true of both bartonella and babesia, especially if you’ve had them a while, which is suspected in my case…they’re both tick-borne, and I don’t remember being bitten (unless that tick I found on my leg this past year was like HA HA YUM before I found him, but I have no idea, frankly, whether a red spot would be a tick bite or one of my usual skin irritations).
I’ve had air hunger quite often in the past year (once it landed me in the ER…remember that? the meds I was on shouldn’t have had that strong of an effect, and wouldn’t have several years ago…I know because I was on them, before). I was marveling at how one day I could walk around fine, with just some pain, and how another day I could barely get out of bed without being out of breath or without falling over. My fevers, weakness and unsteadiness, migraines without provocation…those are hallmarks of babesia.
Bartonella is a little more…mundane, especially when compared to babesia, and some of the symptoms mimic those of Lyme. Neurological symptoms are definitely more pronounced, however, and with the advancing nerve symptoms and brain symptoms (I’m…derpy is the best word, honestly, but spend more and more time frustrated and unable to do much of anything), it’s a possibility that can’t be ignored.
These are ridiculously common with Lyme disease, whether chronic or acute, and from what I’ve read, the reasons behind delayed diagnosis of the co-infections is because Lyme overshadows everything else, since it’s so damned HUGE in its symptom set. Once you start treating for Lyme, anything that’s not a herx is a symptom of something else, essentially.
The hallmarks of both bartonella and babesia have increased in the past 4 months, in particular. When you rule out the side effects of the medications, and the effects of herx, you get clinical diagnoses of two unfriendly co-infections.
My LLMD was talking through all of this, and Forrest and I looked at each other, and there was a shared look of panic…an “oh, shit…” of this happens all the time. It’s not just me being paranoid – those around me are noticing, and that’s when you’re in the FML Zone of Symptoms, as I have been calling it for all of 5 seconds.
So what do we do about it?
Well, I’m going to be taking levaquin and bactrim starting in a week (I’m taking a week off from all meds to give my body a break before jumping back onto the liver-death train).
I just got a prescription for mepron, as well, but we’d talked about not overwhelming my system, so I’m going to call on Monday and see if that’s necessary, or if I can hang onto it. (Mepron is a liquid suspension that looks like yellow paint. It also stains ALL THE THINGS, and costs $1361 without insurance – my insurance covers 94% of the cost, but it’s still $100, so that was a fun discovery…hopefully this is the only course I’ll need, because I can’t afford it.)
The side effects of mepron are basically worsened babesia symptoms.
The side effects of bactrim are basically the same for other antibiotics.
The side effects of levaquin, however, include schizophrenia. I’m not kidding. I don’t know anyone who’s been on this medication while also having Lyme who hasn’t gone a little insane. Marriages have ended, police have been called, violence has ensued.
Given that Ambien made me slice up my leg back in 2009, we’re taking precautions around here by treating me like an unstable toddler (who happens to be tall): locking up all weapons. The intent may not be there for me to hurt myself or someone else, but look at this side effect: feeling that others can hear your thoughts or control your behavior.
LOOK AT IT AGAIN: feeling that others can … control your behavior.
I’m not messing with that, you guys. If I’m going through all this trouble to treat my diseases, I’d like to survive to see the results. If my brain gets the idea that someone else wants me to hurt myself or Forrest – or even one of the cats – I’m going to make it as difficult as possible to accomplish that task.
Other fun side effects include the following:
- seeing, hearing, or feeling things that are not there
- severe mood or mental changes
- unusual behavior
And, my personal favorite: unsteadiness or awkwardness.
I’ve always wanted an excuse for my awkwardness. Now I have one.
All joking aside, if you guys want to help out, because there WILL be additional expenses incurred during this time period, and I have a feeling additional stress may make this worse (and this is for both me AND Forrest – I’m not just asking because I can’t work, I’m asking because there will be days where Forrest may have to stay home and take care of me, or where I may need to reimburse a friend for helping to take care of me), the donation link over there to the left is still active.
As I said in the title, this isn’t an official bleg. I’m not making this post just to ask for help. I’m making it because information and knowledge are power, and I’m continuing in my quest to let folks know what’s going on with my treatment, because this journey isn’t one I want ANYONE ELSE to have to take. Ever.
So wear bug spray. There, that’s my bleg. WEAR BUG SPRAY, FOR THE LOVE OF GOD. And regularly cut the grass and weeds around your house. Seriously, that shit will save you so much money and heartache it’s not even funny.
I will continue to keep folks updated. It might finally be time for another vlog.
Sorry about the lack of responses, y’all. Wordpress doesn’t email me anything, any more (I don’t know why, and I’ve tried several fixes), so that, along with the “pingback” feature being broken, is tempting me to uninstall and then re-install WordPress on this site, altogether.
I’m going to forego all of the other things I was going to talk about, today, and focus on something hilarious.
Hanan was confused about something, made a confused face, and it stuck. She spent about 10 minutes publicly going O GOD WUT, so I offered a suggestion based on personal experience.
My weird habits came in handy!
Another friend of mine (also a Lyme sufferer) offered a scientific explanation: forced magnesium release.
I, however, am going to continue to call it a Christmas miracle, because yep.
(As an aside, my username is a Twitch joke – there’s a group of people who, for whatever reason, call each other “Dinky” on the site, and I was apparently brought into that fold last week. I think it’s hilarious, so I changed my Twitter name to match.)
I’m going to ignore my stupid left hand for a minute and let y’all know what’s up with a few things.
I’ve had pain in my left leg for months, as well as really odd stomach pain (pain in the area of my stomach…not pain that necessarily originates in the organ called “stomach”). The leg pain is not affected by my movement or anything of that nature. My stomach pain depends on how I move, how long I stand, etc.
They began around the same time, but I know they’re not related.
I was supposed to go to the doctor about them last week, but had a seizure and had to reschedule the appointment. So I went yesterday.
I will gloss over the nurse who is just apparently shitty to everyone (and forgot about me last time I was there, then tried to bring a patient into my exam room after 40 minutes), and just focus on the basics.
I had an initial exam of both my leg and my abdomen, and got two very different impressions from my doctor about them.
I’m on Nexium for the next few months to see if the stomach pain is related to an ulcer. I’ve had pain from stomach acid and whatnot before, and it wasn’t anything like this, so I’m still really not convinced, but if the Nexium helps, I certainly won’t complain. If it’s not the lining of my stomach being worn away, I think the next step is probably an endoscopy, followed by CT or MRI and various O GOD scenarios of confusion. So we’ll go with “ulcer” for now.
My leg’s a bit more complicated, even though I’m fairly certain it’s “just” nerve damage.
They sent me to get an ultrasound (ah, the radiology department, where a nurse whose daughter was in band and is my age continues to update me on her life whenever I go in there, even though I met her daughter one time at an honor band, and only remember her because we talked longer than 5 minutes – don’t get me wrong, the nurse is a nice woman, and her daughter’s very successful, and I’m happy for them, but it’s hilarious), where I got to be pantsless, again, while that gel stuff was smeared all over my leg and I giggled incessantly at the noises my veins made when the tech pushed them closed with the ultrasound wand (for diagnostic purposes…but it sounded like a dog coughing).
The results were inconclusive as far as any other issue with my veins is concerned, but the pain’s not caused by a blood clot, and there’s no other fluid build-up that could be seen off-hand. The doctor will review the results and call me to confirm, in which case the next step, if they really want to figure out what it is, will probably be some sort of nerve study, because that’s honestly the only other cause, and the one that I felt it was when I went in…but you know, they have to make sure you’re not going to drop dead after they tell you nothing’s wrong with you, thus the ultrasound.
So…Nexium and a disc with more pictures of my innards on it. My collection of “weird things for a 30-year-old woman to have” is growing steadily.
And that’s all I’ve got, because my hand is threatening a mutiny.
My left hand KILLS when I try to type for too long. I’m still not sure why…it’s mainly the pinky, and the position of my hands/arms doesn’t much matter.
Also, I seriously just keep forgetting to, because I’m stressed out and tired.
I dyed my hair (it’s purple with blue ends, because yep, I felt like it), Thanksgiving happened, my nephew turned 8…these are all “happenings” that I technically could have written about, I suppose.
I haven’t creatively killed any new roaches. My rash is gone (but my skin’s still peeling a bit from it, and my eczema is back). I’m going to the doctor tomorrow for random leg and abdomen pain (neither of which has to do with my surgery – they’ve been around for months).
My incisions have healed very nicely. I’m having pains in the surgery areas, but they’re not terrible as long as I don’t overdo it.
I’ve been hanging around on Twitch a lot. I’ve been painting (sold a commissioned painting). I’m trying to get used to singing, again, because I potentially have gigs in January, February, AND March (…I can’t even tell you how nervous I am about those, honestly).
So, uh, what’s been going on with you all?
Here, have a photo of my hair being all matchy-matchy with my favorite cardigan:
And here are some photos of my awesome nephew’s awesome birthday party:
The mailbox was decked out!
The mural theme was “Sloths in Space.”
Rowan’s dad drew a sloth astronaut.
I drew a sloth with bushy eyebrows.
Minecraft cake is best cake.
Rowan was excited. :-)
The icing turned my tongue green!
There were sloth-themed party games, of course.
This is a vintage PeeWee’s Playhouse play set. Best gift ever!
Oh, I’m going to try to get that YouTube video up, soon. I have some updates on it, from the whole Lyme side of things, and that’s easier than trying to type all that out, here, but I will link it to my blog.
About, oh, 9 or 10 years ago, I was seeing a guy that I met at karaoke, just before the drugging of the drink.
He wasn’t the one who drugged me, mind you – he was just a regular, we got along okay, and we dated for a while.
We didn’t break up under the best circumstances…I don’t even remember how we broke up, but I do remember that it was mostly due to his drinking SO DAMNED MUCH. I thought it was because he was upset over a breakup, but nope – he drank 23 cans of beer one night, as well as 1/2 bottle of Jack Daniels, and then asked me if I’d had any of either (no, because I don’t drink beer, and didn’t like JD at the time…still don’t, really, but it’ll do in a pinch). He admitted maybe he’d had too much to drink on that occasion, and that was the time when I figured it was probably time to bow out.
He’s 12 or 13 years older than I am, and while he’s hysterical when you’ve been drinking, his sense of humor is really juvenile…it always has been, and there’s nothing really wrong with that, it’s just an observation. He’s fun to mess with for this reason, though, so there’s that.
He does get bitter and make “jokes” that are just him being…well, bitter. I dunno, he makes comments and talks crap, but it’s mostly him repeating something that he thinks is apropos, in differing tones until you break his little cycle, and he gets started on something else. He’s done this as long as I’ve known him, I guess.
Why am I using present-tense on someone I dated a decade ago?
Because I ran into him tonight at one of the smallest parties I’ve ever been to. It was a bit of a shock, and I admit that I didn’t even know what to do with myself, at first.
I gave Forrest a panicked look, and when the guy left the room, filled him in on who it was. It didn’t really sink in until a bit later for Forrest, but I got the point across that it was awkward as hell.
Memphis is one of those large cities that’s actually just a small town. It’s such a “small town” that even if you hope to never see someone again, you will, eventually, even if you avoid everything about a person that reminds you of them even in the slightest. I say this because I’ve done just that for so many people, and have just happened upon them because my social circle is just looping over on itself, now.
Allow me to illustrate:
Forrest went to college with “Steve,” who is married to “Marni.” (I’m not using real names for them because while I know and like them, I don’t know them THAT well). Marni worked with this ex…uh…”Daniel,” we’ll call him, back in 1997, through about 6 or 7 years ago, at two different companies. Marni and Daniel are drinking buddies, and basically BFFs.
The last time Forrest and I were at Steve and Marni’s house, they’d mentioned a guy named Daniel, but I didn’t make the connection, because my life had just moved so far past that point that I didn’t associate the name with anyone on my radar.
Daniel began the night full-out avoiding me. I was in the kitchen? He was on the patio. I went on the patio? He went into the living room. I went into the living room? Oh, he’s suddenly got to be on the patio, again. It was ridiculous to the point where others noticed it, and when I said we’d dated, there were, “Ooooooh…” glances. Because everyone at the party knew each other really well, the groups would often congregate in the same area as Daniel (and the hosts are his good friends, so they went around him a lot), leaving me with like, 2 or 3 people to talk to.
I got really tired of it, and decided that I’d had enough.
Now, when I get tired of someone acting like that, I don’t act out and start trash-talking them. Yes, I did that back around, oh, 10 years ago (I have stories, some of them are really cringe-worthy), but now? I’m a fucking adult, and so is Daniel.
What broke it was someone spilled a few drops of beer in the kitchen, and said they’d committed the first “party foul” – I said, “No, Daniel did that in the living room a little while ago – it’s all good!”
Daniel said, “What? I heard something about me in the living room and ‘party foul’?” So I repeated it for him, aware that he probably didn’t know it was me that said it, at first. Yep, sure enough, he got ATTITUDE about it, and started repeating, in nastier tones of voice, “Blame it all on Daniel.” I mean, he was almost chanting it. I broke that cycle by saying, “Well, just don’t dwell on it. That’s the important thing,” sarcastically. He shut up and then started playing a video game (he was testing it for Steve, who’d gotten it as a birthday present, as it was his party), but people gathered in there and Daniel quickly regained what I guess was composure and started chatting, again.
Now, the whole time, he was drinking beers like they were water. I lost count of how many he’d had, and just thought, “Well, good to know it wasn’t my imagination…” He also drove home after all this, which was the main thing that concerned me way back when. I’m pretty sure that’s what he got pissy about, was me doubting his ability to function like an adult or whatever, but it’s a valid concern.
Anyway, people gathered outside, and I was like, “Enough. I’m not going to sit here and let him think some big thing’s going to break out if he talks to me, and vice-versa – if he’s avoiding me, it’s because he doesn’t want a confrontation, so I’m not going to confront him – I’m going to TALK to him, like a human being.”
So I did. I started slow, making comments on what he was saying, and we worked up to actually talking about stuff from back when we were hanging out, before. We rehashed a few things, but politely and jovially. I’d call that a win, wouldn’t you?
The moment I figured I’d “won” what was basically a grudge-match was when he was saying goodbye, and he didn’t hug me, but he kissed my hand after very briefly shaking it. To Daniel, that’s a sign of respect (when he really likes you, he hugs you and kisses you on the cheek – that’s not a goal of mine, I just wanted to stop being so derptastically immature about stuff). So bam, bitches.
I’m not going to seek him out, but if I see him, again, it will be fine. And he’s getting me a video game, because yeah, I asked him in jest, and he just agreed.
And that is how you do it, folks.
I’m not going to try to cover all of it through typing, because that’s a lot of information and a lot of terminology that people either don’t care about, or just plain don’t know what it means. Hell – the only reason I could parse some of it was context clues (from it being, you know, my body).
One thing that explains SO MUCH, however, was directly related to, of all things, one of my ureters (that’s the tube that carries urine from your kidneys to your bladder for storage before you pee). So I’m going to tell you about it, because it made me laugh in kind of a horrified way.
I had had trouble peeing, before, in the sense that I felt like I had to pee much more often than I actually HAD to pee, and my bladder would hurt. I thought I had interstitial cystitis or something until April, in fact (basically, that’s just a generic term for “painful bladder,” even though there is a cause for it that’s related to nerves and whatnot), but my bladder looked juuuuuuuuust fine during my first laparoscopy, so…that wasn’t it.
Whenever I would have menstrual cramps, my bladder would act up, more, and peeing would burn. I thought I had a UTI more times than I can remember because of that burning, but nothing was ever wrong that anyone could tell, so I started ignoring it as best I could.
Of course, post-surgery, I’m still having a few issues with that, but hopefully it won’t be an issue for much longer, once things heal (including, it turns out, the ureter in question).
It was on both sides of my abdomen.
Like silly string. Except…no, I’m still imagining silly string.
From the pathology report: “On the left, the ureter was carefully observed, as it also had been on the right. … With the distortion of the ovary and uterosacral [ligament], the ureter was remarkably in a normal position.” (lol at “remarkably”)
So the “have to pee” feeling was apparently “o god will this pee ever drain,” and the worse feeling during my period was because the muscles were squeezing that ureter into being even MORE inefficient and derpy than it had been, previously, and the scar tissue was just pulling it all over the place.
You see? You saved more than my ovary with those donations and that raffle! You saved my poor little ureter, too! Bless its heart…
Typing on my tablet is a royal pain in the butt. I will often use the VtT function for emails, just because it’s easier.
Unfortunately for my normal emails, that often results in headdesk-worthy word switch-ups and some truly dubious-sounding sentence structure.
Fortunately for my sense of humor, anything not spoken in a slight Southern accent reads like a schizophrenic stroke patient.
I can’t record a good copy of “Jabberwocky” to save my life, at the moment, but I can sure as heck give you guys something in the meantime…
I bring you…
(Divided into lines and verses…see here for reference on what the heck it’s supposed to say.)
Twas brillig on this lady told
Did gyre and gimble in the weave
Lol means you were the borogoves
On the outs of deep
Beware the Jabberwock my son
The Joes that bite the clothes that catch
Beware the Jubjub bird and Sean
The frumious Bandersnatch
He took his work before that happened
Long time to make some for you thought
Forest City by the tone tone 3
I’m still willin food
And if you’re still interested
The Jabberwock with the flame
Kiwi feeling through Tues you would
Adorable as a teen
1212 and through and through
The vorpal blade what sneaker snack
She left it dead I do with your head
He wants something back
I’d have to clean the Jabberwock
Come to my arms maybe Mission Point
A friend just a call clay
Obviously be told
Did Gatorade Giblin the weed
Nancy were the borogoves
On the moment of a babe.
I’m not going to talk about promises made, or private insurance for entrepreneurs and small business owners, or anything like that.
I’m going to talk about our particular plan, from Forrest’s place of business, and how we’re utterly screwed next year because of it. He works at a decent company that’s been fairly awesome about health insurance, but is changing things up, presumably to force people out of the plan so that they don’t have to pay as much (because they do SOME price-matching – it’s what made the plan so awesome for us, this year).
Our deductible hasn’t changed. Our premium isn’t going up that much. Because of this, I guess we’re relatively lucky compared to some.
Where we’re being screwed is our co-pays for doctor visits and prescriptions.
The full price for both will go toward our deductible, and then will go back to the regular things we were paying before ($25/40 for docs/specialists, and $8/16/some-odd-% for prescriptions).
Our deductible isn’t AWFUL, but it’s not great when you look at both of us, and the issues we both have. I have my Lyme disease treatments and my regular treatments for the symptoms I’m having, very few of which can be handled by OTC medications. I will also have things to take care of post-hysterectomy, with hormone adjustments and follow-ups, which will go on for a while until I’m not only healed, but they figure out whether I need HRT or not (even with one ovary, it’s possible, but we’ll see). Tack onto that some emotional issues (mostly anxiety and panic attacks), and I’m kind of high-maintenance. I haven’t even started therapy, yet, so I don’t know how much that’s going to cost…but that’s another deductible-first thing.
Forrest has a CPAP, horrible reflux, and anxiety. He’s medicated for all of these, with regular visits to a sleep clinic and for blood tests for his cholesterol medication in there, as well.
You may argue that we’ll make our deductible quickly, and that may be true, but having to pay all of that up front is causing some serious issues in what our day-to-day life is going to be like next year.
For example, I just tallied up how much the prescriptions I had to refill today would cost with my co-pay as compared to if I had to just pay for them outright. Co-pays = $56. Outright = $831.49. Difference = $775.49 more PER MONTH for what aren’t even all of my monthly meds. My deductible will be met with just medications after something like 3 months. Yay? I think not. Where’s that money going to come from? I can’t work right now, I don’t know when I’ll be able to get a job, and I have other bills, as well.
Then there are my doctor visits, which I have to have at least every 90 days for some things, and monthly for other things. My co-pays for my GP are $25, while the specialists (which my surgeons, gyno, and sometimes my LLMD fall under) are $40. If I get sick in addition to my med visits, or if I have to visit the emergency room, just tack $40 or $150 onto whatever my monthly med total is…but I’m talking about basic monthly care, here. The last time I self-paid, they put me under some medicare thing to keep me from having to pay out the wazoo, but they’re not going to be able to do that, any more, what with the close scrutiny they’ll be under…thus, my regular GP visit will be around $200 a pop, and my gyno, for example, will be around $400 (because I’m no longer having preventative care – I have no uterus, for crying out loud, I’m just going in for maintenance of one ovary and for hormone levels, which aren’t considered mandatory care for women).
That adds at least another $1600/year onto my health expenses, bringing the total to around (using just the prescriptions I got today, which aren’t all of my monthly ones, but it’s close enough to round up to $900/month) $12,400 per year JUST for the basic care I need for my condition.
That’s not even taking Forrest’s care into consideration, and that’s basically the entire salary for a decent part-time job…but I can’t work right now, so where the hell is that money going to come from?
That’s just over $1000/month JUST FOR HEALTH CARE, and that’s not even guaranteed to be the lowest amount. I just…can’t.
Just for HIS medical stuff, Forrest is going to have to get a second, part-time job. He’s so stressed as it is that I’m not sure what on Earth he’s going to do. We’re not going to see each other unless I sleep all day and wait up for him at night, but even then we’ll say hi and he’ll go to bed to get ready for his main job.
And through all of this, yeah, I’m scared, but I’m mostly SO FREAKIN’ MAD.
I’m angry that Lyme is treated like a pariah’s disease, so that I have to work so hard to fix the mistakes made so many years ago, which takes a full 52x longer than the original treatment is purported to take by the CDC (2 weeks is what they say, 2 years is the actual estimate for long-term cases like mine, and I’m the norm, unfortunately).
I’m angry that I can’t work, that no one believes I can’t work because, again, there’s misinformation about Lyme and what it actually does to people.
I’m angry that I can’t help myself that much, and thus help Forrest, because of my illness. This also depresses me, which causes this awful cycle of feeling bad because I feel bad, which makes me feel bad about feeling bad, etc., ad nauseum.
I’m angry that I’m not being taken seriously by major players in the healthcare game, and that I have to fight just to get the basic care that’s provided to people with diseases that have been curable for decades…and which they get from unprotected sex (not talking about AIDS, obviously, but syphilis is on that list, YEP).
I’m angry that I’m made to feel like a second-class citizen because I’m up-front about my illness. I don’t tell people, “WAH, I have Lyme, FEEL SORRY FOR ME.” I say, “I have Lyme. Let me run down the physical symptoms and what I’m doing about them to make myself better so that I can stop being sick as soon as possible.” Doesn’t matter how positive you are when you present it, people still think you’re whining, and feel the need to point out that “at least [I] don’t have cancer,” or something like that. No, you’ve got it wrong – I almost wish I had cancer, if only because people would take me more seriously.
And what the hell are people with cancer going to do with this new insurance?!? I mean, holy crap, I have a choice whether or not I want to do chemo for Lyme (my treatment will just take a much longer time, but at least I will be getting treatment), but people with certain types of cancers have no choice – it’s either hook up that PICC line, or die in 3 months. What are they supposed to do when they’ve got such limited coverage?
I’m just…apoplectic. I JUST CAN’T RIGHT NOW.
And to top it all off, my rash is showing all signs of being an allergic reaction, now (it’s started itching, and it’s continued to spread even though I’m following all of my doctors’ suggestions), and that’s had me on edge. Yeah, it’s a little thing in the big scheme of things, but it’s just something I don’t need. Otherwise, I’m recovering fine, I suppose. My skin feels hot constantly (not just over my surgery site, before someone asks), and I have a rash spreading over my body. Those are my two main complaints. I just hope it’s not something that is a result of my medication schedule or something, because the last thing I need is my liver fucking up.
And speaking of my liver, I WANT A GLASS OF WINE SO BADLY. But nope – can’t have one, because meds. And this is where being a responsible patient becomes a pain in the ass. I don’t even want to get drunk – I just miss the taste of my wine. How utterly sad is that?
I will not have a drink. I will pout, instead. Then I will fume while watching Netflix. It’s the only recourse I have, right now.