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.

Thanks for 2 years, m’lady.

In light of my emo one-liner, I do also want to publicly thank my partner, Jenn, for sticking with me for 2 years as of today. She takes care of me every day, helps me with so many aspects of my health, wellness, and disability, and is a constant support even when it means compromising aspects of her own life. She is selfless and giving, and brings so much positive light into my life just by existing near to me.

Love you a lot, ladyface.

Pain is dumb

There’s not really a lot else to say.

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.

Unsurance

No, it’s not a typo. Yes, this little cripple has been without insurance for a solid 5 days now. I am officially unsured.

I had to leave my job due to…how do I say this diplomatically…there was a little bit of a misunderstanding about how much responsibility my position should entail, which ended up making it very uncomfortable for me to take time off for my health. In all, it’s been very valuable for me to have time to rest and also to be with Jenn, and though I miss my co-workers and my clients, I know I made the right decision. It was, however, a decision that had a consequence of losing my insurance.

I’m realizing how incredibly, INCREDIBLY privileged I have been for this to be the first time that I am dealing with this. I have always been in the universe’s good graces and have always managed to hold jobs that offer insurance. In addition, my family has always made it a priority to have insurance for me and my brother, and both he and I had a childhood knowing that we were insured.

How cliche can I get? Really, Scout? A Lyme blog talking about insurance? Oh yeah. I’m doing it. In the words of the a true prophet, the genius Madame Gwendolyn Stefani, “this shit is bananas.”

Man, I got something in my eye tonight and my first thought was, “What if I scratch my cornea and need eyedrop antibiotics and can’t afford to go to the doctor to get them?!” Ok, before you assume I’m over-reacting, in the land of “weird things that only happen to Scout,” several years ago I was walking home with a friend and got dust in my eye, which lodged there and scratched my cornea. I DID in fact have to go to the eye doctor after spending 24 hours unable to open my eye, and he said the magical phrase: “Ok, just relax…I’m going to flip your eyelid inside out now.” Freaking, EW, right?

So it’s legitimate. A little crazy, but it’s legitimate. No, nothing actually happened tonight and my eye is fine and yes I’m a giant hypochondriac sometimes but trust me, when you are a cripple AND a lifelong giant klutz, sometimes it’s worth it to be on the lookout for disaster.

I had the option to go with COBRA instead of being completely without insurance. For those of you that might think I’m insane for not doing so, note this:

1 doctor’s appointment without insurance – $450
1 month of COBRA – $537

Yes, it would cost me almost $550 just to extend my shitty insurance plan, for which I have had and would continue to have stupidly high co-pays for everything, not to mention the amount of things that I need that just aren’t covered at all. It will actually cost me less in the event that I need to go to the hospital, because those services are covered by state free care.

So…I’m playing it safe. Trying to keep away from ice patches, pecking birds, lava pits, head hunters, and monkey armies. If I can tough it out, it’ll be totally worth it to be able to go back to the Haverford Wellness Center once I’m insured again. As long as I don’t run into a wayward monkey on the way.

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.

Eroticka: 50% orgasm, 50% unyielding torture

 Last night I had my first pain seizure in about 6 months – which I actually thought had been way longer before I typed that out. I had left work with the intention of going to class from 5:35-8:05, but knew I was probably only going to make it through half of it. I was right, and left around 7 with the beginnings of a sorta-migraine, jaw pain, and general aches and swollen joints. By the time I got to Jenn’s house (which is less than 5 minutes, for you non-Portlanders) my jaw hurt so much that I didn’t want to talk at all and the only thing I could do was crawl into bed.

Having what we lovingly refer to as  a pain seizure is kind of like an anti-orgasm. It works in a lot of the same ways. The pain starts out minimal, then builds and builds over a period of anywhere between 2 and 30 minutes – during which time my muscles spasm and cramp – until it culminates in my whole body seizing up, usually shaking, my pain hitting about a 12 on the 1-10 scale, and me losing the ability to talk, breathe normally, and move. It’s odd, right? Half of that paragraph could probably be used to write erotica. Lyme erotica! See post title for creative joke. Positive thinking, guys – it’s like 50% the same as an orgasm! And then 50% the same as being slowly tortured to death. You win some, you lose some.

So, yet again Jenn wins partner of the year award. She got into bed with me for the last few minutes of it, and after it was over she very nonchalantly helped me to sit up, took off my shoes, went and got me soup (still in too much pain to chew) and painkillers, and then sat with me for over an hour while things re-adjusted. She said my eyes looked glassy, which was a pretty good indication of my mental capacity at that point. I eventually got to sleep around 11 and woke up today (not on purpose) at 5:30 AM. I’m sleepy and my pain is at about a constant 7, spiking up to a 9 occasionally.

I did have an appointment while I was in Philly with Dr. Braccia of the Haverford Wellness Center. No words exist for me to speak highly enough of this dude. He talked with us for 2 hours, never once spoke to use like we were idiots, talked through almost each individual symptom to find out more about it, thanked us for all the prep work we did for the appointment, etc. He said he can’t see this being anything BUT Lyme. He explained all of the possible testing methods, including some that are only being used by the lab he uses. When he asked if I had questions, I asked what he would do if everything came back negative. This has happened with every other doctor, and every other doctor has thrown up their hands.

With no hesitation, he said, “if the tests come back negative, we keep testing.” He explained that we only test a very small sample of blood, and it’s possible that the sample we get is just seronegative even if I’m positive (I did know this already). So – here’s the cool part – if the sample we get is negative, we do serial testing. That means I get tested every week until we find a positive. He said he has one lady patient who had to get tested for 22 weeks in a row, but on the 22nd week they found it and after that they were able to get her treatment covered. Hello, awesome.

He’s keeping me off anti-biotics but starting me on Cymbalta, which has been recommended by the Lyme psychiatrist (those exist!) that he knows. It’s supposed to help with depression/anxiety and body pain. As long as there are low sexual side effects and I don’t immediately gain 100 pounds, I’m game for whatever. Anyone have any Cymbalta stories you wanna tell me about?

So I’m trying to keep my chin up even though I’m evidently having a not-so-fun flare right now. My partner is absolutely amazing, as is my family, as are my friends. This continues to be such a long and arduous path, and I really thank from the bottom of my heart everyone that has stuck with me throughout everything.

Even if it’s only for my hilarious post titles.

Your Monthly Cripple Update

I keep saying I’m going to update this more. Raise your hand if you’re surprised when I forget. I blame the Lyme disease. (shh)

Happy 2011. The year so far has been eons better than last year. I’m happy, my girlfriend is amazing, my roommate is wonderful, I am back in school. I have a job, I love my clients, I love my staff. Still not healthy. But happy, which is half the battle. Or something.

In the last handful of months, I went to a new PCP, who referred me to the Lahey clinic neurologists in Boston, where I went and met with a woman that told me I needed to see a psychiatrist because my “depression has not been properly managed.” I tried to explain to her if one is depressed, one typically experiences some amount of discomfort or dissatisfaction with their life, whereas I am (generally) a positive person, am in a job in a field I adore, and don’t feel sad or disconnected. I DO feel fatigued constantly, and I DO get frustrated when I want to go out and I can’t stand up long enough to do it, or when I grab a snack between classes and it makes me break out in hives, or when I can’t sleep for more than three hours a night. Those things are frustrating for me, but I feel that’s justified. So, anyway, her whole stance was that “depression is a real thing,” and she “wasn’t invalidating my symptoms,” and something else, blah blah.

That’s all fine. We are all entitled to our opinions. My primary issue was that all of this was prefaced by her expressing that she does not believe chronic Lyme exists without positive tests, and that the reason she doesn’t deal with it is because she sees it used as an exclusionary diagnosis. It can’t be anything else, so it’s Lyme. I just fail to see how that’s different from “Well, you aren’t testing positive for anything else, so it must be depression.” She also said that I was having trouble with muscle control because I wasn’t trying hard enough. Had my muscles been working right, I would have punched her in the knees. Not really. But I had a fantasy for a minute.

So…in a sudden plot twist, I am going back to Dr. M in Kennebunk. I have been off all anti-biotics for 8 months now, and it’s kind of the clean slate we were looking for before. I’ve been taking supplements again and keeping up with all of my non-antibiotic meds, so hopefully we can take a second look at this. Who knows, maybe I’ll test positive when I don’t have an entire Rite Aid’s worth of horse pill-sized antibiotics floating around in my blood. Likely not. But maybe.

Recently I’ve been noticing way more of a flare trend than before. Whereas for a while, I was just at a pain 10 and a fatigue 10 and an everything 10 all the time, it’s coming in waves way more now when I’m off meds. I’m not sleeping – again – but my pain’s been better over the last week. It was HORRIBLE over the holidays (really, really bad) and recently my TMJ/headaches have been worse than usual, but everything else has been decent. I am also keeping in mind that the weather does have a huge effect on how I’m feeling, and right now it hasn’t snowed for a few days so it’s possible that is why I’m feeling this way. It feels weird to say I’ve been “doing better” lately because right now I am a total trainwreck. I’m exhausted and in crazy pain and having trouble speaking. Whoops. Maybe I spoke too soon.

Anyway. This is going to be the year of positive attitude. I said that last year, and I did all right despite all of the curve balls 2010 decided to throw. This year I have my fingers crossed for better insurance, a non-exclusionary diagnosis, and treatment. Maybe by this time next year I won’t even have reason to update this blog anymore. Let’s just hope.

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.