I’m going to try to keep up with posting these as I can, but with my treatment, trying to get back to work, and catching up on stuff around here, it may be difficult.
I’m going to try to keep up with posting these as I can, but with my treatment, trying to get back to work, and catching up on stuff around here, it may be difficult.
…I’ve developed a very itchy, bumpy rash on my right foot (top) and my left hand (top, just below the index finger knuckle).
I also haven’t been to sleep at all because of alternating stomach pain and muscle spasms. My wrists, thighs, calves , and even my neck just randomly jerk.
Am calling LLMD tomorrow (today, I suppose) to find out WTF to do. I can’t lose my job over this. I can’t. f I do, I will have NOTHING except my bed and online interaction, and no offense, but it’s nice seeing people in person.
As an aside, and a tie-in to my surgery (which Jennifer has so kindly outlined the cause of, in extreme layman’s terms, here), the constipation from the abx is causing me to have severe menstrual-type cramps, though I’m nowhere near my period. The colon tugs on the uterus when it does its thing, and of course that causes pain. Alternately, when I’m having bad enough cramps, my bowels in that area are just…closed or something. THAT is why I need this surgery – and I wasn’t completely lying when I said I have to be careful when I cough, STILL, because of my surgery site. It’s not the external ones, of course – it’s the scar tissue that’s forming from the excision, which is why hysterectomy is the best choice right now…I may get scar tissue, but at least it won’t have such a pliable organ to manipulate.
NOTE: I have gotten some awesome emails from folks. I will be pasting them here, with named changed to protect folks, but it’s really, REALLY nice to get an email from someone who’s been through what you have, to a certain degree, or is currently doing the same thing you’re doing, and having the same struggles. I’m no expert, by any means, but it feels good to say stuff like, “there are days when all I can tolerate are gluten-free peanut butter sandwiches and milk, and my stomach won’t accept anything else, for some reason,” and get a reply like, “I know! Mine’s brown rice with salt. I don’t get it.” This, of course, sparks a conversation about body chemistry, level of treatment a person is on, among other things, and having someone to just go back and forth with, even when you’re so tired all you want to do is go to sleep forever, is invaluable. It keeps you from giving up.
Not that I’m close to giving up – I’m just about as frustrated as someone trying to take a chlamydia piss about my stomach acting up the way it is. (Nice visuals, eh?)
Anyway, so now I’m getting rashes. So add tat to the list. Calling doc later, as I said. I need to return to work. NNEEEEEEDD TOOOOO.
So apparently these photos need explanation, though I’m not sure why – they seem pretty straightforward to me…heh.
The first one was taken, granted, about four month ago, but it was in preparation for a doctor’s visit wherein I was basically going to ask them “WHAT THE HELL IS GOING ON WITH MY FACE?” You may remember this situation from this post (from TWO YEARS ago – and that photo is from January). You can also see me talk about it in this vlog (from January). The response from the doctors, BTW, was, “Um?”
My LLMD instantly said, “your kidneys are overworked.” Well, duh. I mean, I needed a doctor to say it, but still.
You may not see a big different aside from my eyes and facial expression. That’s a lot of the response I’m getting,. Let me point out a few other things: You can see my jawline in the second photo. You can see my eyes. I can MOVE my face to make an expression in the second photo (though it does feature pursed lips…dunno why I did that, but whatevs). The first one is completely deadpan, because that’s all I could do. When I tried to smile, it felt like my face was going to blow up from the inside.
I don’t consider myself traditionally beautiful, but I’ve been told I’m pretty. I clean up well (I’m wearing makeup in the second photo, obviously), and there are days where I look in the mirror and think, “Damn, I look GOOD today!”
That first picture is a monster, to me. It’s a freakin’ monster. It’s not me. It’s this bloated mass that’s somehow stolen a conglomeration of my facial features and distorted them. My lips, nose…basically every feature except my eyes is larger, and my eyes are squished to nearly nothing (I tried to open them wide – that’s as far as I got, and y’all KNOW I can open my eyes really wide when I want to).
THAT is the difference. And both of them are me. Both of them are my face. And both of them look the way they do because I’ve had Lyme for 16 years (the second one, were I not wearing makeup, would feature under-eye hollows and forehead creases – I chose it only because I *look* healthy in that photo, and that’s the point of the mini-collage).
Here’s the thing, y’all – I can make myself look like I feel awesome. Chances are really good, however, that I woke up looking like the photo on the left. It’s not ideal, but it’s me. It’s Lyme. It affects everything.
And I hope that explanation cleared things up a bit.
June 4, 2013
I’ve decided that, no matter how horrible, awful, ridiculous, or even silly things get, I want to record as much as possible. I need to remember this. Other people need to read it. This is Lyme. MY Lyme, but Lyme, regardless.
This entry is long, because I’m going to talk about some medical details as well as just my day, so y’all understand things.
There seems to be a tie-in, or some sort of pattern, that occurs every two days. On the odd night, my stomach is okay. On the even night, it hurts so badly I can barely move. This is only the 4th day, and I feel like I’m getting an ulcer. The pain is a…singular sensation. Every little step he takes…
The evening of June 3, I took a nap, and then was up talking to a friend for a while on Skype (it cheered me up so much). I had a Five Guys single-patty cheeseburger, because after all of the vomiting, I felt I needed the protein and carbs more than I needed to stick to my gluten-free plan.
This morning, I was awakened by a horrible pain in my back. Just…a pain. I don’t even know what type to call it. It wasn’t soreness, or sharp…it just hurt. It was like muscle cramping, but…more awkward? I don’t know how to describe it.
I thought, well, I’ll take some ibuprofen and get to work and do what I can, stepped off of my bed, and my legs collapsed from under me. I ended up in Child’s Pose beside my bed, except with my arms oddly askew as I tried to hold my upper body in a somewhat rigid position so that I could assess whether or not I’d make it to the toilet, as I had to pee quite badly. Thankfully, Forrest happened to be walking by my bedroom, so I called to him for help, and he helped me to the bathroom (over the pile of clothing that I need to let my friends go through before donating it to the Salvation Army).
Did I mention, yet, that my pee is orange because fo the Flagyl? Because it is. It’s almost funny…I’m taking Vitamin B, as well, so my pee is like, Day-Glo.
Needless to say…second day in a row I didn’t make it to work. Awesome. Luckily, my boss has an immunological thing, so she understands. This is just ridiculous timing. I wish I’d known I was going to herx so quickly, because I would have started my medications a few weeks later. As it is, I look unreliable. That’s…well, it sucks. I know I can’t go in tomorrow, either, because with the way my stomach feels, tonight, I’m bound to be puking in 7 hours…just like I was on June 3rd. This is like a puzzle game…find the pattern! Woo!
For more than half the day, I had to use my cane more like a walker (both hands, straight in front of me, putting my weight on it), until Forrest picked up my prescriptions, which included lortab and valium. I used both. I looked forward to using both. I’ve never felt that feeling, before. It’s unsettling.
I know part of my stomach pain is because of my NSAIDs. I’m going to cut back on them. I started taking my ibuprofen TID because of joint pain, and that will get worse with the herx, but honestly, I’m more worried about my stomach, right now. As I mentioned in my last update, puking that much can’t be good for my teeth, and I’d like to do it as seldom as possible. Also, just…ow. Like right now? My stomach hurts more than anything else.
After I took my lortab and valium, with my mid-day dose of abx and whatnot, I was able to move around a little better, but felt someone should watch me just in case, since, well, I had quite a bit of continuing muscle issues and, with the combined medications, wanted to make sure that whole “muscles don’t work” thing didn’t happen again without someone around. So my friend Jason came over with his friend and bassist, and they rehearsed some music while I did my best to just not be…well, sick. I dunno how else to explain it.
As of now, it’s technically June 5, by 15 minutes, and I’m going to hopefully go to bed soon, and my stomach will help me out by not being a dick, and I’ll be able to get at least a few hours’ sleep, even if I don’t make it to work tomorrow because of the inevitable puke-fest that’s likely to happen.
I know that sounds pessimistic, but somehow anticipating it makes it better – I expect it, so it’s not as bad, even though I really hate throwing up.
I’ve always had an issue with my gag reflex while brushing my teeth (tongue, specifically), but the past few days, brushing my teeth/tongue has resulted in an automatic vomiting, so I have been trying to be careful and utilize mouthwash more so than a brush. It still makes me feel urpy, but it’s better…not for my oral health, necessarily (not brushing my tongue makes it feel furry because of complications from the systemic yeast infection in my digestive tract, so ick), but for not puking in the sink, which is just a pain in the ass.
I took a bath with Epsom salts and eucalyptus this afternoon, as I’ve read that helps draw toxins out of your skin (which is referred to by some as your “third kidney”), and I feel like it helped, but at the same time, I don’t know if I feel better because of the detox, or being clean. My skin had been burning horribly, though, and that stopped, so there might be something to it. I was simultaneously cold and burning up, and my skin felt prickly and strange.
I will say one thing, though…the lemon/lime water thing? Where you mix the juice of one lemon and one lime with 8 oz. of water and drink it through a straw (to save your teeth, of course)? CALLING BS. My stomach was hurting, but manageable, until I drank that shit. Holy CRAP that was terrible. My doctor recommended it, and it’s all over websites, but clearly I’m doing something wrong, or it’s just NOT the time for that treatment, because wow…again, OW STOMACH OW.
By the way, here are the most common symptoms of herx, according to the man himself, Herxheimer (the ones I’ve experienced since Sunday are in bold):
“The most common symptoms reported include increased fatigue, joint or muscle pain, skin rashes, photosensitivity, irritability, paresthesia [my note: fancy term for prickly feeling with numbness], dizziness, sleep disturbances, asthenia [my note: fancy word for muscle weakness], muscle cramps, night sweats, hypertension, hypotension, headaches (especially migraines) and swollen glands [my note: wasn't sure whether to include this one because my glands are pretty swollen, in my armpits and neck, all the time, but they're more tender]. Also reported are heavy perspiration, metallic taste in mouth, chills, nausea, bloating, constipation or diarrhea, low grade fever, heart palpitations, tachycardia, facial palsy, tinnitus, mental confusion, uncoordinated movement, pruritis [my note: fancy word for itching], bone pain, flu-like syndrome, conjunctivitis and throat swelling.”
Also? I can see the freakin’ capillaries in my hands. They’re red. They have a distinct pattern. I don’t know if that counts as a rash, but yeah. It’s creepy as all hell.
Anyway, today felt like a day where I should go over what, exactly, a herx entails, since mine’s just freakin’ taking over my life right now…I will talk about it pretty consistently, so you might as well know what the hell I’m saying.
OMG. During the course of the two hours I’ve been writing this entry, my stomach pain has gone away! YUSSSSS!
Also? I can take 22 pills in a single gulp, with just a bit of liquid. I’m not sure this is a great thing, but, well, at least I don’t have to laboriously take like, 3 at a time, 7 times. That would suck.
Aaaaaand 10 minutes later, my stomach hurts again. *facepalm*
With that, I’m done with this entry. Goodnight!
I get two phone calls, minimum, every single day, from a certain ginormous corporation that specializes in student loans, especially since I took my “sick leave” from CBU.
I recently (as in, 10 minutes ago) answered the phone, and as I was not feeling charitable enough to even discuss a payment plan, had the following exchange:
Her: ”Would you like to do a forbearance on your loan for the time being? It will be [amount of money I don't have, and won't for quite a number of weeks] for the number of loans you have, currently.”
Me: ”Well, I’m going to be frank with you. Right now, I have no intention of giving you guys any money, even if I had it. Would you like me to tell you why?”
Her: ”Well, ma’am, technically that’s a default…”
Me: ”Oh, I’m all kinds of aware of that, and I couldn’t give less of a shit, if you’ll pardon my language. You see, I’m taking medication that makes me feel like I have the flu, except it’s supposed to do that, and it’s supposed to make me better, because after 16 years of not knowing what the hell was wrong with me, I finally have an answer, and so I’ve spent the day throwing up because of this wonderful medication that is, despite the side effects, doing what it’s supposed to do. I care more about THAT than owing the equivalent of a 30-year mortgage on a mansion, do you understand?”
Her: ”I’m not really sure what you’re talking about, but, um, we can discuss payment options…”
Me: ”I just told you. I’m not giving y’all any money right now. I have something called Lyme disease. You can look it up, later. L-Y-M-E. Part of it involves my immune system doing stupid things like gluing my internal organs together for shits and giggles. If I cough too hard, I could give birth to my colon…as in, traditionally, through my freakin’ vagina. Alternately, I could poop and find my uterus in the toilet. Sounds fun, right? And I have to pay for surgery for that to not happen, and while I happen to have insurance, it’s tenuous, and I still have to find money so that I don’t die in the midst of all of this vomiting and careful coughing and tick-borne madness I’m currently experiencing. Until THAT is resolved and paid for with the money I DO have, and I am able to find gainful employment, y’all need to stop calling me, because you’re wasting your time, you’re wasting my time, and I don’t give a fuck about my credit.”
Me: ”I’m very sorry to have taken out my frustrations on you, as I know you just work there, but I’m hanging up, now. You can write whatever you want on your report. I’m going back to sleep. Happy Monday.”
Obviously I exaggerated, but for fuck’s sake. They have records. They know I dropped to half-time, and they were notified that I was taking a medical leave of absence from school. Get it together, you anal derbies.
And clearly, herxing is as pleasant as using a cactus as a dildo. So, you know, I genuinely am sorry that poor girl had to be the one to call me, today. Maybe I’ll get one day without phone calls, though. That’d be nice.
Yes, that would be mighty fine.
As part of my treatment, I am to keep a journal of symptoms and things I notice while being treated. I’m not going to type everything, but enough to jog my memory, because if I typed everything, it would just take too long. I’m going to create a Lyme Glossary page on my blog so you guys will know what I’m talking about with certain shortcuts. I started my abx on June 1, so that’s where this journal begins.
June 1, 2013
I started my antibiotics, today. I’m taking doxycycline twice a day (100mg), and Flagyl three times a day (250mg). I’m going to use “BID” for “twice a day” and “TID” for “three times a day” from now on. I may need to make a glossary, but that won’t happen right now.
In addition, I’m to continue with my Nystatin (antifungal), and I’m on pro-biotics at night to keep my gut flora in check, because, well, I’m basically killing all the yeast AND bacteria, and there are good of both that you need, so I’m expected to have some stomach discomfort. It’s not like I haven’t, before (I often gag when I brush my teeth…it’s almost a running joke, now), so whatever.
I started them at night because the doc forgot to call them in yesterday at my actual appointment. He was busy, whatever, at least I have them. So I’m excited, apprehensive, and thus far, I feel nothing except the feeling of “more pills”. Not sure how to explain that, except to say that I have 17 pills I take at night, only, now. That’s quite a lot, actually. Most are supplements and vitamins that I need, since I won’t be able to go out in the sun for like, two years. I should invest in a parasol [note: after making this written entry, Breda told me this on my FB...I thought it was funny].
I got dry shampoo, body wash cloths, easy-grip nail care stuff, and other things to make getting ready on my “bad” days easier. Let’s hope they don’t show up very soon. I have shit to do.
As an aside, my Wasband got married, today. My treatment will probably last longer than his marriage, but perhaps that’s just me being mean. I honestly hope he’s learned something, and treats his wife well, and if he doesn’t that she gets the hell out quickly. That’s actually all I have to say about that. Not my problem, any more. Hers. Period. I’m moving on, and moving up…even as I go through what’s been described by many as a horrible roller-coaster of physical symptoms. We’ll see.
June 2, 2010
Woke up late, didn’t take my first dose until just after 1pm. All other doses were late as a result, but I don’t think that really affected anything, since I still spaced them properly.
A friend took me shopping, and I found that I’ve lost enough weight to fit into my old favorites, the Levi’s 518…in a size 15 Junior’s. I haven’t been this size since 2008. I have lost weight/size since starting my thyroid meds, but wow…and I just picked them off the shelf to try on. It was just awesome. I also got a nice work shirt…in a medium (women’s size, not junior’s…har har). My boobs are a little big for it, but my boobs are a little big for a lot of things, so that’s not unusual.
We also went to a cigar shop, and I got some cigar boxes for organizing little things in my bathroom, as well as a leatherette one for Forrest that I thought he would like. They sell them for $3 each at the Tinder Box, and all proceeds go to charity.
I slathered on SPF 50 before leaving the house, and minimized my time in sunlight, so I don’t think I will have a sun-related reaction to my antibiotics (“abx” from now on).
I also found a smoothie-type drink that fits my diet criteria – it’s made by “Naked”, and is carrot/orange juice. It tastes much better than it sounds. It gave me a good boost, and it’s literally juices-only. Perfect.
I had a stressful night, but was able to stave off any bad results of anger at someone, merely becoming exhausted instead of having a seizure. This is a positive step.
My stomach hurt quite a bit before bed, but I took some Mylanta, and it calmed down. I hope it’s just a result of adjustment, and not a sign of things to come.
June 3, 2012 (A.M.)
Well, so far this morning, from 6am until about 8am, I just threw up. I woke up with the immediate need to vomit, but of course there was nothing but acid in there, so that was fun. Then it turned to foam, then nothing, and I’m very, VERY glad that nothing red or black came out. It was just…nausea, I guess.
My muscles hurt, but I was able to take my meds at around 9am, with some bread and applesauce, sipping water carefully and sitting very still.
I feel like I have the flu, and if I didn’t know better, I’d say that’s what this was. But…well…I know better.
I’ve heard of people getting their Herxheimer reactions mere hours after starting their abx, but I guess I thought it would actually take a couple of weeks, because I thought I was in the cystic phase of Lyme (http://www.lymebook.com/top10forms), and that phase is notoriously stubborn about responding to antibiotics…though once it does, the reaction’s pretty severe. I suppose my recent environment and movement changes with the new job pushed it into the cell-wall-deficient phase, which, well…reacts more strongly to abx. That link, BTW, is just for reference of forms. The book is not endorsed by me in any way. That was simply the easiest and best explanation I could find of the forms of Lyme.
Anyway, apparently I’m not so special, and so now I’m fighting nausea, again, and will likely try to get the doc to call me in some zofran or something to help keep me from being unable to go to work. I need to go to work, or I’ll lose this position, and I can’t do that. I need this job. I need to be healthy, which is why I’m doing half-days the remainder of this week (doc’s suggestion!), but man, this really puts a damper in everything.
I just have to remind myself: It will get worse before it gets better.
It will get worse before it gets better.
It WILL get better.
I WILL BEAT THIS. I’m stronger than this. I survived Wasband, I can survive this. :-P
I will update in the P.M., if I’m able, to note the rest of my day. I have a feeling it will read something like, “threw up some more, watched Netflix, boyfriend tried to fix car radiator, slept, threw up again, haven’t really been able to eat, but hanging in there.” Just so you know what to expect. I just hope I’m done puking for the day. This can’t be good for my teeth.
Basically, I got my Lyme tests back, they’re uber-positive, I’m going in Friday to discuss antibiotics options, and there are serious risks.
I started a new job, today (temporary – on campus, doing filing and sorting and research), and….I’m exhausted, because it turned out to involve more stairs than most cardio workout tapes. It’s good, though. Very good. Can pay bills, so won’t have to ask for as much help from y’all.
My Twitch friends ordered me a computer so that I can stream more, because they want to watch me more often. If that’s not the strangest reason…yeah. But it’s also because of hard times. So I am blessed, more than some.
I paid it forward by using money I was saving to help fix my car (from a while back…it’s been sitting for quite some time) to pay it forward to someone deserving, today. I feel so great about it, but now I have to beg for rides from work until I can get my car fixed. You take the bad with the good, I suppose. Making someone like that so happy was just such a highlight – I never get to do that, any more.
There’s been personal drama that I’ve been dealing with, but involves so many people I’m afraid are going to get hut. Can’t talk about it in detail.
Remind me to tell you about the latest Wasband drama.
Yeah, I have to go to bed. I’m so tired.
Goodnight, everyone. I will update substantially soon, I promise.
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