On Bikram, stress, and my toddler-esque planning skills

I haven’t written in this for over a year, so kudos to anyone that is reading! Gold star for your interest. Golf claps.

I started doing Bikram yoga, and now I am one of those obnoxious people who is going to talk your ear off about how Bikram changed my life. J has been doing Bikram for a long time and I watched her transform herself through her practice. It was amazing to witness, but I still couldn’t get past how cranky I get during the summer; I kept saying I would hate it, and I wouldn’t try it. Two giant crazy things happened to change that:
1) I randomly thought to myself, “Self, what if I am saying that I wouldn’t like it, but really I am avoiding it because I think I CAN’T do it?” I really don’t like being defeated by things, so I had to make sure that it would be terrible and not just impossible.
2) A doctor gave me some of the scariest news I have ever gotten. See below.
I’ll back up.

In February, I had my first moment of feeling no pain that I can remember. That isn’t an exaggeration. I think I had a solid day where I didn’t have any of the radiating pain through all of my joints and limbs, and I cried because I was so happy. I can’t thank my amazing doctor at Penn for getting me on an effective medication – or my amazing partner for putting together an effective supplement cocktail – enough to actually make it clear how grateful I am to either of them. I have more functional days than not, and I thank my lucky stars for everything that made that possible.

The cocktail keeps the general pain at bay, but my knee, hip, and back have continued to be equally painful, leading me to think that there is probably something separate governing those joints. I had accepted that I was going to be walking with a cane and bracing my leg every day for the rest of my life. As it turns out, those things are probably true. But I was at a point of having resigned myself to it, and I think that was the problem…which brings me back to giant crazy thing #2. I went to the doctor to talk about options for physical therapy to try to get the knee/hip/back thing under control. She had me sitting on the table with my legs hanging down, and she came over to me and put one hand on each of my thighs. She squeezed each of my thighs for literally a second each, and then said:

“The muscles in your left leg have started to atrophy.”

OH. OKAY THEN. GOOD THING THAT’S NOT TERRIFYING TO HEAR.

So, I started Bikram, because I thought that regardless of how much I disliked heat, it couldn’t be any worse than having my leg muscles atrophy at the ripe old age of 26. Ha! It’s amazing the things we can do when we are properly motivated. As it turns out, Bikram has been amazing. I haven’t been up front with any of the instructors as far as my disability goes. I’m torn. I don’t want to make excuses for why I can’t do things, and I worry that being open about it will turn into that. But I also know that the way my body moves is very predictably governed by my disability, and a lot of that results in hyperflexibility, weakness, etc., which can really screw up a yoga posture.

I also, admittedly, still feel silly about claiming disability status, especially when the nature of said disability is still up in the air. I’m having more neurological symptoms – e.g. feeling like someone is pouring cold water down my legs, difficulty urinating (not incontinence–the opposite. Super-continence! I’m very continent), occasional stuttering/speech difficulties, pins and needles in my fingers – and I’m in the process of scheduling a battery of neurological exams to start to deal with that stuff. But in the meantime, it feels a little foolish to say, “Oh, by the way, I have Lyme disease, or MS, or some other weird neurological thing, or something, I don’t really know, uh…what was the question?” Also, there are a million yoga instructors, only about 3 of which know my name, so I also feel weird being like “HI, you don’t know me but I’m mostly broken! Word!” These are all things I’ve been dealing with since day 1; none of them are new. But it just feels like a new iteration of the same routines.

SO. But yes, Bikram! I lost something like 10 pounds and I’m starting to build strength in ways I didn’t think was possible. It definitely hurts, and it DEFINITELY wears me out – especially when  I am already feeling more fatigued than normal – but at the end of the day I am 100% always every-single-time glad to be doing it. I recommend it to anyone and everyone. You don’t have to be flexible, you don’t have to be strong, you don’t have to be coordinated. You just have to go and make an effort. It sounds cheesy but it’s totally true. You benefit just by being there. I mean it. Take it from this cripple: it’s worth it.

In other news…without fail, I am ALWAYS terrible at refilling my prescriptions. What the crap. It is partially because I take 4 pills every night, so…you know, the day before I run out of something there are still 8 pills in the bottle, so it never looks like an emergency until it is very much an emergency. But this time I called it in the day before I ran out! And the world was against me. The doctor’s office takes 2 business days to respond to refill requests – not counting the day you call them in – and in addition to that, the stupid pharmacy was out of my stupid medication so now I have been without it for THREE DAYS. I basically feel inhuman. I can’t sleep. I am so tired I can’t make decisions. I’m so tired that I can’t deal with watching movies I haven’t seen before because it’s too much energy to follow a plot. Hence non-stop Law & Order: SVU for the last 4 days. Seriously, fatigue is something you really can’t understand unless you’ve experienced it. It’s not just tired, it’s like…you can feel the blood moving through your veins because everything is conscious and everything is an effort. Gross. On top of that, my pain is back as of 2 days ago, which tooooooootally sucks. Once I get back on my meds (tonight!), it will probably take about a week for the symptoms to die down again, which will feel like it is forever but will eventually be over.

I feel like there were other things I wanted to write about, but I can’t remember what they are. As it is this post has taken me over an hour to write because I keep forgetting what I’m doing. YAY CRIPPLE BRAIN. I guess I will try to update this before summer of 2013.

Oh, also, I’m engaged! Did I write that in here yet? I’m totally getting hitched to my amazing shmoopy partner and I’m wicked excited. We are trying to figure out how to make an awesome wedding happen in the midst of both of us being in school and working two jobs. Any advice from experience would be much appreciated!

Thanks for reading, if you’re still reading! While I’m busy forgetting to write entries in here, you can check out my comic, Queers With Cats, at http://www.queerswithcats.com. Sometimes I say funny things. Enjoy.
Be well, everyone!

How many freaking times do I have to come out in this lifetime?

Applying for jobs is a weird experience. The “in an interview” me is so radically different from the real me; I suppose in a similar fashion to how the “internet personality” me is likely different from the real me. The difference is that in real life and in my internet life, I am very quick to come out about every facet of who I am – gender, sexuality, disability, political stance, etc. – yet somehow the second I get behind an interview table, that confidence dissolves and I’m left with starchy, model citizen, heteronormative, perfectly abled…me?

It leaves me feeling kind of dirty every time. Not in a fun way, either.

There’s a stigma. I can’t put my finger on what it is, but I have a feeling that it’s the reason I can’t talk about disability during job interviews. Both sides of the argument seem legitimate. There’s the side for keeping it quiet: of course I shouldn’t talk about it, because it’s personal and not necessarily related to the job I would be doing, so my employer doesn’t care to hear about it during an interview when I should be talking about my strengths. But then there’s this other part of me that wants to scream: wait a second, shut the hell up, self! You want to hear about a time when I’ve stood up for myself? You want to hear about a time I coped with adversity? I’ve got some stories for you. You want to hear about an accomplishment? I’m proud of myself every time I take a walk and don’t fall down. I’m proud of myself every time I leave a doctor’s office where a “professional” just spent an hour telling me that I’m crazy, and I can walk away still believing in myself.

There’s so much to say about it, and yet there’s nothing to say to guarantee that it won’t adversely affect my potential employer’s idea of who I am. But that very idea is completely false when they see me as a straight dude (possibly a little queeny, but likely not queer) with no health problems who’s a go-getter and ready to give this job my all. And it’s not that I won’t give it – whatever “it” is – my all, because I will. But sometimes my all has to spend a day sitting down because my all’s knees are too swollen to be on my feet. Sometimes my all hasn’t gotten more than a few hours of sleep because my all has insomnia. Sometimes my all can’t process things quickly enough to be responsible for decisions that affect another person’s wellbeing. It’s part of the whole package, and I have learned how to work with all of those quirks and still be an awesome, dependable employee who to this day has never been fired or received corrective action from a job.

So WHY can’t I sell it like that?

Even if it didn’t require any growth, or energy, or sense of self, or anything to be the person that I am, it violates my morals as a Quaker to not be honest – with myself and with the person doing the interview. I know that my disability affects my performance sometimes. Everyone has their shit, and this happens to be mine. It’s not like it means I need constant accommodation (not that it would be less or more justifiable if I did), I just need a little compassion every once in a while. I don’t apply to jobs I can’t do. And I CAN do a lot.

Ugh. Gross, self. Maybe someday I’ll be able to walk the walk, since I spend so much time talking the talk.

Hot steaming Christ.

Oh my gosh, it’s so freaking hot out. Global warming sucks.

Left Portland, moved to Philly. Still uninsured. Still trying to figure out what the next move is as far as getting treatment. I was supposed to have an appointment with Dr. Braccia next week, but I had to cancel it. The appointments were expensive enough when my insurance WAS covering bloodwork; at this point it would be nearly impossible.

The last few days,  all I can think about is treatment. Yesterday I went out and walked around Philly with J, and then went and hung out at my parents’ house. I got sunburned, but not too terribly bad. I remember being on antibiotics, how my face would burn within 5 minutes – no exaggeration – when I stepped outside. I’m thankful to not be doing that anymore. I know that if I were to go on IV antibiotics (well, hopefully *when* I go on IV) that would start again, but I am curious about what the other similarities and differences would be. My antibiotics were oral before, so while I was getting burned on the outside, I was also having my insides ripped apart. We think that the meds might have been responsible for why I developed so many random allergies so quickly. 2+ years of constant oral meds will kick your ass. Just FYI.

So now I’m applying for jobs, hoping I can find work that gives me quick insurance (and hopefully good insurance) and pays me well enough that we can look into starting treatment as soon as possible. I mean, also just having insurance so that when I do something stupid and walk into a plate glass window or step on a drill bit or…I don’t know, accidentally eat the cat, we won’t have to worry about anything. And trust me, I am prone to doing stupid things.

Oh, and if you see me out walking without my cane, please just yell at me, or smack me in the face, or throw things at me until I go get it and use it. Every single time I leave the house without it, I am limpy and feel like a douchebag within 5 minutes. Remember what I said about doing stupid things? Wasn’t kidding.

Hi to everyone.

Chin up.

I recently spoke at the University of New Hampshire on a panel about disability. We had about 40 students show up. One of them came up to me afterward and wondered if she could ask a “weird question.” She proceeded to tell me about how she had all of the symptoms I had described, had tested positive for Lyme 3 times but the second test kept coming back negative, but her symptoms were not changing and doctors were refusing to treat her. We talked for quite a while, and I just responded to an e-mail she sent me, and sent her resources, doctor names, websites, etc. One of the things I sent was the trailer on Youtube for “Under Our Skin” (located here: http://www.youtube.com/watch?v=sxWgS0XLVqw – if you haven’t watched it, I highly recommend it). After I sent the e-mail, I went to Youtube and watched it again…and now I’m sitting here, at my computer, crying.

I’m tired of this. It feels like it’s been forever that I’ve been having these symptoms, and nothing is better. When I was taking intramuscular Bicillin, I saw some improvement, but other than that it’s been static and/or getting worse. After my most recent appointment, I started taking Cymbalta, which within 5 days had completely demolished both my sex drive as well as my ability to orgasm. I was on it for around three weeks before I decided to stop it. Now I have been experiencing severe withdrawal symptoms, including feeling “brain zaps,” which is like being moderately shocked every 30 seconds or so, bad headaches, increased body pain, heart palpitations, and a stutter that is making me feel stupid and unable to communicate. In addition, I’m more tired, which is making me depressed, which is contributing to pain, which is making me tired, which is making me depressed…and on and on.

I want to be better SO BAD. I do see this as a disability and I know that it will affect me for the rest of my life, and I’m accepting of that and try to be really good about recognizing that I AM strong, and it HAS taken a lot of strength of character for me to get through it up until this point, and that there IS really good disability community and I will never really be alone in this fight. But it’s being in pain every single fucking day, and feeling totally crazy, and having to constantly worry about insurance and money and how I’m going to keep a job when mid-flare I can’t safely drive or walk…I just feel like I can’t do it.

There are so many positives in my life right now. My roommate is incredible, my best friends continue to be my best friends and give me unwavering support that so frequently catches me off-guard but makes me feel like the luckiest person ever, my family is unbelievably supportive in every single way, and I just got engaged to my girlfriend – well, now she’s my fiancee – who is…I mean, beyond words amazing. She doesn’t hesitate for half a second when she has to help me get to the bathroom, or when I have to talk about gross things with her, she doesn’t make a big deal out of it when my speech issues get bad, and she makes me feel like I can get through anything. I AM the luckiest person ever, which makes feeling self-pity that much worse. I feel like I have so much, and to want more than what I have is just selfish. I know I am lucky. I am blessed. The struggles I go through with my disability are challenges from God and the Universe and Oprah and whoever else is controlling the world, to make me stronger…and I know it’s working. I just wish I didn’t also feel so weak.

Ugh. Nothing like crying alone in your house to make you feel awesome, right?

I have faith that someday the medical community will get their shit together. I’m trying to have faith about everything. But if you happen to have a little extra to spare, please don’t hesitate to send it my way.

Wow guys, 2010 SUCKED.

Let me tell you how excited I am for it to not be 2010 anymore. Are you ready?

I am so excited for it to not be 2010 anymore. SO excited.  2010 is dumb.

That said. This is not my reflective post about the ups and downs of being emo, whiny little cripple-jew boy. This is the update post. So, DOCTOR UPDATES:

– Had an EMG (poke your muscles with needles and give you electric shocks…’bout as much fun as it sounds) – came back normal
– Saw 2 neurologists who saw countless motor issues occurring but can’t imagine any neurological condition that would cause the breadth of symptoms I have.
– Started with a new doctor – Dr. S – who said that she definitely won’t be able to figure it out herself but wants to try to refer me to someone that can. This being Lahey Clinic in Burlington, MA, where I am going next Wednesday to meet with a team of neurologists. However, Dr. S also said “I wouldn’t put too much stock in neurology helping you for what you’ve got.” Hi! I’m confused. At this point I feel like I’m constantly wearing an “I’m With Stupid” shirt and a spinner cap. That’s the maturity level I exude when I am disoriented, apparently. But my bestie/life coach will be there and I do not have doubts that she will lay the smack down if doctors try to pull one over on me. I still think I have Lyme. You know why I think that? Because I don’t have anything else, and I already tried all your other stupid meds, and I still can’t walk. I dunno. Just seems like an indication, but what do I know.
PHYSICAL UPDATES:

– Missed work last week because I woke up, realized I wasn’t going to be able to walk without a cane, and went right back to sleep. Kinda cinches that decision for me.
– Pain has been really good when it’s really good, and REALLY BAD when it’s really bad. I have vicodin which is good, but I get so paranoid about building up tolerances or forgetting what the pain actually feels like in case it comes back when I’m not on vicodin anymore.  I don’t want it to knock me on my ass later just because I took painkillers now. However, vicodin almost turns me into a normal human being that can do things like walk, and sit in one spot, and hug people, and get out of bed. I say “almost” because I am pretty much still on the in bed level, but I am in bed talking online with people, watching movies, getting up to go to the bathroom, putting on clothes by myself..those are not always present, so it is great for me when they are. I’m having more bad days than good, but more functionally bad days than debilitating bad days. So…on a weird ratio, I’m having more functional days than debilitating days. That is really good.
– I feel like I’m going crazy a little. It’s partially because of being unhappy at work, partially because of stress, partially because I’m not sleeping, mostly because of how bad my pain has been. When it’s bad enough, I can’t make decisions, even really simple ones (should I use crayons or markers? will take me 10 minutes at least) and I can’t complete daily tasks without cognitively breaking them down. I  frequently get out of the car and walk to the porch without having turned off my car, or will get into my car and shift without ever having turned it on. I can’t always get the “get the key from key ring, put key in keyhole, turn key, turn handle, remove key” sequence when I am working.
– My balance has been TERRIBLE. It is a big part of why I am using the cane again. I am just up one second and down the next, no provocation. In the interest of avoiding embarrassment and potential falling into lava pits or whatever might happen to be next to me, I’m going to just use a cane.
– Also, formication. It’s gross. You probably don’t know what it means, so go look it up. It sounds like sex but it means something awful and I have it, and it’s still going on. And increasing sometimes. And making me want to remove my skin completely. EW.

OK.
I think I had other things? But ambien has kicked in and I am in lala land. SO I am going to go watch resident evil and drift sweetly into dreamland.

Oh! I want to know who’s reading. If you got through the blogswamp and are reading this now, leave me a note and say hi. I’m always wondering who is reading and how they found it. Y’know? Fun stuff.

 

Toodles!

 

How to Be Thankful

Hello, internet, from Newburgh, NY. I came home with J to be with her family for Thanksgiving. This is the first time since high school I have had an actual Thanksgiving break. I think last year I had Thursday and Friday off but didn’t take more time than that. This year, I worked Monday and then we immediately drove here. Tedious, but really great. I love J’s family. They are fantabulous and I feel so welcome despite being one of the most high-maintenance house guests possible. J’s mom baked her a gluten-free cake for her birthday so that I could partake. Amazing.

With the good comes the tough. I did something horrible to my back on Sunday, then worked with a difficult client, then worked with that same client on Monday. On Monday, she spent a good two hours hitting, kicking and slapping me, and then I drove 5ish hours to NY. I spent most of yesterday afternoon and evening in bed, thinking it would be better by today. It is not. I am actually in so much pain that I can’t hold myself upright. I don’t know what the hell I did to it, but coupled with the rest of my normal pain I am pretty much a mess. I’m trying not to take painkillers because I am a stubborn stoic butch, but it is difficult. Jury’s still out on whether I can make it to family Thanksgiving tomorrow. I’m pushing for yes, but I also don’t want to be hugely annoying and distracting because I am a big cripple. Weighing the possibilities.

I’m a pretty devout believer in remembering that just because Thanksgiving has a bad history, it doesn’t mean we should pass it up as an opportunity to be grateful for what we have. I’ll tell you…sometimes it’s hard. It’s not that I’m not appreciative of the things I have, because I am, and with the effort to be positive comes the ability to recognize the things that I DO have as opposed to the things that I am missing out on. …but sometimes it’s hard. Things have been up and down; yesterday I was down to using the on-screen keyboard because I couldn’t hold my head up enough to see the keyboard and type, and I was working one-handed because my left hand kind of shut down. My immune system is also failing, as evidenced by developing a series of sores on the inside of my mouth, and my tattoos looking like my skin is trying to push them away. Gross. Gross, body. Just gross. Further downside is that it means something is developing that hasn’t yet actually hit me, and given how much is already here…well, I’m not sure what else I can take.

I’m seeing doctors at the Lahey Clinic in Boston on December 15th, but my doctor that referred me specifically told me not to place too much faith in that bringing any results. So…I’m a little confused about why I’m putting in the effort to drive all the way to Boston for an appointment that is “not promising.” Still sans diagnosis, still sans medication, still sans improvement. Spending all of my free time in bed at this point, or on the couch if I can sit up, and watching a lot of 30 Rock (I’m not complaining about that one, though it does make me miss Pamela). Skipping classes, skipping work…I miss dependably being able to walk, and write, and do all of that fun stuff.

And then I have to turn that around and filter it back into being thankful for what I do have. I have an amazing partner that loves me unconditionally and takes care of me even when I can’t get to the bathroom by myself (I tend to yell “THE ROMANCE IS GONE, ISN’T IT?!” while she is helping me limp to the toilet), and bakes me cupcakes when I am sad (and even when I am not), and is generally just incredible. I have really unbelievably supportive friends that have taco nights with us, or let us 3-way-spoon in their bed when we are visiting them, or still love me even though we have dated and broken up, or ask me to come visit so that they can try out new gluten-free crock pot recipes, or have feelings conversations with me and then let me ride on the back of their wheelchair when I can’t walk by myself. I have an incredible family, chosen and blood, that are willing to put themselves out to support me financially, emotionally and physically when I need it, and can make me laugh even when it makes me angry that I am laughing. I have a roommate that makes me giggle and draws me pictures and listens to me when everything sucks and doesn’t complain about my army of cats in our tiny (but wonderful) apartment. I have a job that, despite its areas of physical difficulties, pushes me to be a better person and develop myself as a leader and as a peer. Oh, and I have great cats.

Ok, I will admit, I just teared up writing that. Maybe it’s the painkillers, but I’m a little weepy after remembering how much I actually have. You guys are all amazing and I’m lucky to know you. Thanks for continuing to read this, and talk to me about it, and be supportive and wonderful in every possible way. I couldn’t ask for more. Unless you each made me a pie. I guess that would pretty much rule. I really like pie.

I hope that all of you are with someone you love during this week when we should all remember the things that make life awesome. Thank you for being on that list for me.

It’s true, I ain’t Lyme’in.

Hello again, world.

I haven’t written for a few months. This is largely due to how little I’ve actually been able to do over the last few months. Pretty much anything involving my hands, feet, legs or back has been a crap-shoot. Near-constant fevers, one or two degrees above normal, one or two wicked bad pain seizures (totally missed those!), and – OH, in other really attractive news, having constant food allergies has returned to my life. It slowed down for a little bit, but now I’m back to getting facial hives about 75% of the time after I eat. The good thing is that now I can eat things I know I’m allergic to (i.e. gummy candy) because if I’m going to have an allergic reaction anyway, might as well enjoy myself beforehand.

Also, today I was working with a client in-home and I felt this little pinchy feeling on my back – you know, the kind where usually you just scratch it and it goes away. So, I scratched it. A few seconds later I felt a couple of them at the same time. I thought it was odd, and scratched again. A few seconds later, it felt like a HUNDRED BUGS WERE EATING MY BACK. It caught me so off-guard that I literally grabbed the counter in the bathroom where I was standing because the whole world sort of went dark for a second. I touched my back, hoping it would go away. It did for a second (unrelated to me touching it), then came back, then went away, then came back, then went away. Did that a couple more times and then stopped. It was fine until about 5 hours later when I was out with my roommate in South Portland, and it happened again (in the same way) except that time it also did it on my forehead and the top of my head. Totally, totally, completely, 100% unpleasant. The bugs simile is the closest I can get to describing it except to say it felt like I ran into a beehive back-first. Get that image good and rooted in your head. You can laugh. Go ahead.

Doctor-wise, I stopped seeing Dr. M (in Kennebunk) because he was essentially placating me when I went in to see him. I have a phone appointment with Dr. R (in NY) that I’m going to cancel because I don’t need to pay $350 for him to tell me I need an IV again, and that’s what he’s told me the last 3 times I’ve talked to him. I started seeing a doctor in Portland, who used to be J’s PCP, and we really thought he was going to be the key to this whole shitshow. Turns out, not so much. After most of my blood tests came back normal (except the one that tests for internal inflammation, which was – not surprisingly – elevated), I asked if we should start looking at MS as a possibility. His response was, “Why? What’s the point? There’s no cure, why the fuck would you want to know if you had MS?” I said, “Well, I kind of just want to know what we’re dealing with.” He said, “I wouldn’t want to know if I had it, there’s nothing you can do about it. Why would you want to know that?” I told him that I was mostly just tired of searching for diagnoses and wanted to figure out what was wrong, and he said, “Look, don’t get emotional. Don’t bring emotions into this, we’re not dealing with emotions. We’re dealing with science.” After J yelled at him, we decided we were not going to fight that battle anymore. While I’m not going to write his name here, I will gladly tell people individually. I would not recommend him in any way, shape or form.

So, on Tuesday I’m starting with Dr. S. She is a) a lady, and b) in South Portland. I feel that both of these things will be helpful. Also, we wrote out a very amazingly detailed list of all of my symptoms, chronologically and listing severity, and I’ve been keeping a chart for the last 2 days that, in 15 minute increments, lists a) the activity I’m doing, b) my pain level from 1-10 where 1 is no pain and 10 is “can’t stand up” pain, and c) my fatigue level from 1-10, where 1 is not tired and 10 is sleeping/in bed. Turns out I am not feeling well a lot of the time. While anyone that knows me probably thinks that’s obvious, I spend a lot of time convincing myself that it’s not so bad. When I’m actually focusing and recording it every 15 minutes, and not just trying to remember blocks of time, it’s not pretty.

So, there’s that. My hands and feet hurt a lot, but I’ve tested negative for diabetes. There are days I can’t walk by myself, but I don’t have other symptoms of MS (though it does run in my family). I have pretty much every available symptom of Lyme, but they can’t find it. I’ve been on all of the marketed medications for fibromyalgia, and none of them were remotely effective. I’m currently taking Vicodin, which is doing more than anything else ever has to somewhat stabilize my life. It means I can do things like go to school, and have a job, both of which I enjoy…though I will be going on short-term disability most likely (again) depending on what this new doctor says.

J has been an absolute saint. I am beyond lucky to have her, and she makes things tolerable if not okay. She rocks at taking care of me, and I feel totally blessed. ❤

I will start writing more, if only to have a log of what’s actually going on. Hi to everyone, I’ve missed you all. Say hi back if you’re out there in the giant internet void. Tell me a story.

New Motto: Let go and let God.

Yeah, it’s pretty much the same as being really positive, except it’s more along the lines of realism. Same long-term effect, I’m thinking…well, hoping, anyway. If not, I guess I owe the world a Coke.

I’ll do this update as quickly and painlessly – for me and for you – as possible. In June, I went to my Maine PCP, who took me off anti-biotics because he said that both he and my NY doctor agreed that they weren’t doing anything for me. I was fine for about 2 weeks, and then my body began to shut down. I had worse pain than I have ever had before (that is saying something) radiating through my spine and legs, to the point where I at one point lost peripheral vision. So, I’m sure it was really fun for him when I came back for my next appointment in August and reported what had been going on. He hurriedly put me back on Zithromax, as well as a Vitamin C and sea salt remedy and a buttload of supplements.

About three weeks ago I was tabling with Jenn at First Friday, and upon getting home I said I needed to lay down. I got into bed, and stayed there from about 9pm on Friday until noon on Tuesday. I was out of bed for a cumulative hour over that weekend, and couldn’t stay on my feet for more than 5 minutes at a time. Getting from the bed to the bathroom required Jenn to hold me up and walk with me. There were moments when I couldn’t hold cups by myself to drink. It is a miracle (for me, but mostly for Jenn) that I could still wipe my own ass. When that goes away, I’ll make sure to immediately blog about it, though.

Sunday morning, I was laying in bed while Jenn got ready for work, and out of nowhere I lost the ability to respond. What followed was essentially a 50-minute mini-coma. I could hear her talking, but I couldn’t move, speak, or open my eyes, and my breathing got very shallow. In an act of sainthood, she called into work and said she wouldn’t be in for a little while, and then sat next to me and talked to me for the entirety of the episode. She joked around, told me what she was doing, kept me completely mentally engaged. It was enough to keep me from freaking out (more) about what was going on. Eventually I was able to slowly open my eyes, and it took about a full hour after that for me to have full movement in the rest of my body.

Good thing that wasn’t terrifying.

Luckily, the next day I had an appointment with my New York PCP, who – upon hearing about the episode – said that it was obvious I need to be on IV antibiotics because oral ones aren’t cutting it anymore. I spent the next few days processing the fact that I was going to spend a year unable to work paying $15k for an IV. It’s like Christmas and my birthday all at once!

A week later, I started seeing a new doctor in Maine. It’s an internal medicine doctor who has been Jenn’s PCP for the last few years. We were planning on not telling him about the Lyme diagnosis so that we could get a clean slate. After doing a mini-physical, he said, “Well, I have no idea why you’re in pain. Let’s run some tests and see if anything comes up. Take some ibuprofen if your stomach can handle it.” I shot Jenn a look, and she started explaining the situation about the diagnosis. He asked if that was why I was on Zithromax, and then said that three years was WAY too long for anyone to be on antibiotics, and that for him to keep me on them when he doesn’t know what I have would be malpractice. He said that if I wanted to stay on them and be with my other doctors, he would completely understand, but that if I continue seeing him I would not be taking them anymore.

I said that was okay. I want to figure out what the hell is going on. THEN, he said, “So, do you want something for the pain?” I shit you not, for the first time in THREE YEARS a doctor offered me pain medication. I took the offer, very gratefully. I’ve been able to self-medicate when I need it, and it is making things closer to bearable. We go in again on Tuesday to talk about blood test results and what the next step is.

Oddly enough, at this point I am wondering whether maybe it is MS after all. I’m losing function – there are many days that I can’t handwrite at all, and I am unable to eat some foods that I really enjoy. Like tortilla chips, some days. That is a SAD THING, ladies and germs. In any case, I’m at the point where I truly am understanding that things are going to happen regardless. I am dealing with symptoms as they come up, but trying not to get too down in the mouth about it. Outside of this business, things don’t suck, and that’s enough to make it worth it. I have a lot of days where I can’t keep my chin up and end up feeling really depressed, but for the most part I am trying to keep in mind that everything is there for a reason, and whatever comes to pass is the way it’s supposed to be.

Deep breaths.

Weight Weight, Don’t Tell Me.

I’m writing to you, oh internet, from beneath a giant pile of arctic wildlife. My limbs are now swathed in polar bears and penguins.

A few months ago, J returned my weighted blanket to the company from whence it came for an exchange. While 21 pounds sounds like a lot, when it’s spread out over a full size blanket….well, unless you are a person whose body is the width and length of a full-size bed, there’s a lot of blanket that’s just hanging out on the bed, and not a whole lot left to play for team “Pain Management”. So, back to Montana it went. Eight very long months later (I’ll spare both the company name and my customer service spiel), my blanket re-arrived. Twin size, 25 pounds. It is…wonderful. I was quite literally days away from posting a Craigslist ad expressing that I would pay someone $20 to just come lay on top of me for an hour. I’m glad the blanket arrived first.

I’ve been mid-relapse for the last 5 or 6 weeks, and I had a feeling I was on the upswing but it doesn’t feel like it today. I’m back at the point where, on days when I’m -not- working, I wonder how I actually get up and go to work every other day. I’ve entirely lost the ability to hand-write things, other than a) signatures and b) post-it length notes. Luckily, about 85% of my work can be typed rather than hand-written, and the parts that can’t, I am…mostly just not doing. Oops. Perhaps they should get some accessible equipment, it would seem.

I was going to make this a detailed update, but I’m having trouble keeping my focus and typing at the moment. More soon.

Ooh, a POLL! How fancy!

[Whoa, there is a POLL at the bottom of this post!]

Wow. I can’t believe it’s been almost two months since I last updated. I was doing so well with remembering to write, and then that just went out the door. I wish I could say it is because I am feeling amazing and have been out doing oodles of amazing things with my amazing antibiotic-free life.

Unfortunately, the reason I haven’t been writing is because I really wanted that to be the case, but it isn’t. I’ve spent the last two months declining – slowly at first, and recently much quicker. Old symptoms have been coming up – things I haven’t felt for at least a year, sometimes two. Chest pain, air hunger, pulse changes. Within the last week, my pain has gotten out of control. I haven’t hurt this much…possibly ever. I’m sure I’ve had bad days that surpassed this, but never have I had pain this constant, unchanging and severe for this long a period of time. I have had a constant spinal headache that has been fluctuating in intensity from day to day but has not stopped; pain that is hitting between an 8 and 10 on the pain scale, and is sometimes so bad that I can’t hold myself up or concentrate on something as simple as talking. It is in my joints, muscles and bones. It is so bad that I am, at times, laughing about it because if I don’t I will cry. I haven’t had an appetite and when I do, I can get down at most 2 meals a day but generally have been forcing myself to eat even one. Acid reflux is back, stomachaches are back. I’m not sleeping more than a few hours a night, and I am waking up from pain every hour to two hours.

It’s not pretty.

So, I went back to Dr. M. I reported what’s been going on, and he is not comfortable keeping me off of treatment when things are getting so obviously bad. He put me back on Zithromax (175, 1 pill 2 times a day), is having me continue the detox drops, stay on the Resveritrol, but also start 2 new treatments. One is specifically marketed for lowering cholesterol. It binds to toxins in your intestines and forces your body to expel them with waste. He thinks it will help with symptoms of Bartonella and help detox my actual intestinal tract, which is probably holding a good amount of crap (no pun intended). He is also putting me on Vitamin C/Sea salt treatment. You may remember this from the last time I mentioned it and then proceeded to not do it. I am actually doing it now. He thinks it will have significant die-off effect. As fun as that won’t be, you know…fingers crossed.

I have a question for all ye occupants of the internet. I have a lot of trouble gauging when I need to miss work. I often have “bad days,” but when I’m trying to figure out whether or not I should stay in bed or go to work, people tend to say, “Well, if you feel like you CAN go into work, you should.” This is not helpful. With few exceptions, I physically CAN get myself from home to work, and can force myself to do the required tasks. And I WILL force myself, because I can’t tell when I’m supposed to listen to the fact that I feel sick and when I’m supposed to ignore it in order to maintain a healthy lifestyle. I always hurt, I am always tired, and while there are days that it is worse and days that it is better, it is always present and thus I am always pushing it out of the way to do what I need to get done. Does this make sense? There are a lot of days that I am amazed that I actually pull off a work day, but with few exceptions, I DO pull it off.

This is for anyone struggling with ANY kind of disability or chronic illness, not just Lyme/coinfections…in fact, I would like variety. What I’d like to know is: what does it mean for you to have a “bad day”? And what does that “bad day” have to look like in order for it to constitute missing work? I gave options just to provide examples, but I really want to know your perspective, in your words. If you want to respond with an “other” answer, please put it in the comments because the specific answers aren’t showing up in the poll (at least for me).

Please please please pass the link to this post around. I would love as much contribution as possible, and I think it will be really interesting to see the variance. Pass it to anyone you know that can give their input.  Share it through whatever means you have to do so. Please please please and thank you.

Fingers crossed on this new treatment. I’ll be better about updating from now on, pinky swear.