“Patients For A Moment” Is Here June 8th

I’ll be hosting “Patients For A Moment” on June 8th.

I’ve been feeling pretty down lately, as is evidenced by my last post, so my question for this edition is related to that:

What gets you down, and what do you do to pick yourself back up?

(You don’t necessarily have to specifically address the second part of the question if you aren’t sure what the answer is).

Sorry to be doom and gloom, but sometimes you’ve just got to let it flow in order to move forward.

If you would like to submit a post, e-mail the following to gettingclosertomyself@gmail.com:

Your name (as it should appear)
Your blog’s name
Your post’s title
Your post’s URL

And make sure you put “PFAM” in the subject line.

All submissions wishing to be considered should be received by 11:59 p.m. Sunday, June 5th.

A big thank you to those who heard my plea and volunteered to host PFAM during the summer months. Please note that there are still several spots still available for 2011 that are up for grabs. Please contact me if you are interested in hosting.

The Dark Side Of The Moon, The Underbelly Of My Soul

“Made a wrong turn once or twice

Dug my way out, blood and fire

Bad decisions, that's alright

Welcome to my silly life

Mistreated, misplaced, misunderstood

Miss ‘No way, it’s all good’

It didn’t slow me down.

Mistaken, always second guessing

Underestimated, look I’m still around […]”

- “Fuckin’ Perfect,” Pink

I haven’t unleashed this much blackness in a while. It doesn’t feel good, but I have to let it out. I am screaming inside.

And it’s weird. Because there are good things happening. But I don’t see them. I only what isn’t there, what’s lacking, what’s missing.

I’ve made it a practice of putting it all out here on my blog. I have been honest, possibly to a fault. So here I go again…

Let me just say that the rain is destroying my life. The other morning, I got up, made coffee, and was checking e-mails, only to keep lifting an empty coffee cup to my lips. I had drank it all, but felt like I had none. I ended up hopping back into bed for about another hour, and felt better. But as the day cycled through rain on and off, so did my brain.

I’ve been feeling a bit down, as I think about this time last year, and how I was meeting my now ex-boyfriend’s parents. It’s amazing how things can change. And it’s sad. Really sad. Because now, I worry about running into my ex-boyfriend. I literally have panic attacks when I walk the same route to get to the hospital that he and I used to walk together. I hate being afraid of people. But I think the fear stems from the fact that the last experiences we had together were with a person I didn’t know, didn’t even recognize. And what if I see him and he ignores me?

It’s the unknowns that I hate. What if, what if, what if. I just wish things could have been different. What if my whole life is one big fucking mistake? How’s that for a what if?

It’s like, I wonder. Do people see me as strong? Because I’ve cried in the middle of the grocery store, I’ve cried at Starbucks, I’ve cried pretty much anywhere you can cry where you won’t get committed.

This might sound horrible, but I am so sick of fighting for myself. There are honestly days where I feel like I could stay in bed and no one would know the difference.

It’s so damn hard to be strong all the time.

Old patterns re-emerge. I am feeling awful, to the point of barely functioning. I scrape myself off the wall. I’m sleeping my life away. Is this just Plaquenil withdrawal while waiting for the Quinacrine to kick in? Is the Quinacrine working at all? How can I trust the process, when right now, I can’t trust myself?

Then there is the pain, from the top of my head to the soles of my feet. And it hurts to breathe. It feels like there giant air bubbles between my ribs. Maybe I started feeling a bit better because I acknowledged that I could take prednisone. I didn’t take any. But the thought of any kind of out was appealing.

Depression is a bitch. And chronic illness is a bigger bitch. Wow, great, my life is full of bitches and assholes. How wonderful. Go me!

I’m a walking liability, literally and figuratively.

Sometimes the hardest thing to do is to forgive ourselves for crimes we’ve committed against ourselves. I need to forgive myself for being blind-sided by illness. I need to forgive myself for being blind-sided by a boyfriend who was as clueless about himself as he was about relationships.

And it seems as if every errand on my to-do list turns into a multi-step process.

Last week I went to get my student ID card renewed. As a volunteer at the hospital, they only make it good for a year. So I went to the ID place and they told me that I had to get a form from volunteer services. So I go to volunteer services and am told that this necessitates me filling out all of the paper work all over again (on a yearly basis). This also necessitates being asked if my emergency contact info, with my ex-boyfriend’s info is still current. Buzz the fuck off. So I am doing all this stuff and the person tells me that in the future I should make an appointment. Okay bitch. Don’t bust my hump for something I didn’t know I had to do. All I wanted to do was get a new ID before mine expired. And don’t worry. Based on how you treat your volunteers, there probably won’t be a next year.

Why is this woman treating me like I’m a fucking child? I haven’t been a child for a long time. I’m not really sure I was a child even when I was a child. And chronic illness took any shred of innocence I had left. Pain is real. Too real. And pain and loneliness are a really bad combination.

I was due for a tetanus shot in September. I’ve been putting it off. After the whole cellulitis thing, I tend to be wary of vaccines, especially ones given by the student health center. So I went. I got the shot. And I needed to get a copy of my vaccine record for volunteering. The nurse hands my chart off to the receptionist, and tells her I need a copy of my vaccine record. The receptionist acts all put out about this. And then she starts complaining that my medical record is too long and that I should get a new one. And she’s bitching and bitching and bitching. And I’m breaking into a cold sweat, and the room is tilting, and I feel like I am going to pass out. I’m not sure if I was actually having a reaction to the shot, or if my previous history of vaccine flub-ups is causing anxiety. I’m ready to run for the door and tell the receptionist she’s off the hook, but I do my best not to pass out, because I resent her feeling inconvenienced because I’m sick.

When did everyone get so fucking annoying? And when did I resort to non-violent protest? To just stand there and nod and smile? I guess because I am better at writing the shit out of it than talking about it.

I have snot all over my face because I’m crying. And my arm hurts from the fucking tetanus shot. And I just want to curl up into the fetal position, and return to a time when there was nothing to understand. But I’m already there. I really don’t understand what’s happening to me, or why things are happening the way they are.

For the first real love to tell you that they don’t love you anymore. That hurts. That hurts a lot. It hurts more than anything any person should ever be allowed to do to another person.

I get the feeling that we are never going to be friends. And it frustrates me because I’m the one trying to offer an olive branch, when I should be the one saying fuck you. Fuck you. You dumped me. And I should hate your fucking guts. But I don’t. I get heart palpitations and it’s hard for me to breathe at the thought of seeing him. At the thought of what a face-to-face encounter would be like.

And then there’s survivor guilt. There are times when I think about my cousin and I wonder why it was him and not me. Why did I get more time and he didn’t? Time for what? To see how much I can take before I break? Because I think I’ve hit my limit. The everyday, minute interactions have become too much. I don’t want to talk about my emergency contact information, or the fact that I don’t have a boyfriend, or the fact that my medical record is three inches thick. I don’t want these to be the things the define me. But they are. They are. And I hate it! I’m so over being nice to people who don’t deserve my pleasantries. Especially since there are obviously so little pleasantries at the moment.

I am not a martyr.

Life is fucking hard. If life is easy, you’ve done something wrong.

I’m overwhelmed. Between the weather and the new med. And everything else. Maybe I should have left well enough alone, but it didn't feel like well enough to me.

We put ourselves out there, hoping that the risk will be worth the reward. But sometimes it isn’t. Sometimes the risk is just plain risky. It puts you in the position of being made to feel lower than you’ve ever felt before. Lower than you thought it was even possible to go.

I’ve hit a rough patch. Things will get better. They have to. They have to.

Through my tears, I am trying to smile…

Traveling (Alone) With Lupus And Rheumatoid Arthritis

For the next edition of Patients For A Moment, Maria at My Life Works Today! wants to know what your goals are for the summer, which you won’t let illness get in the way of. This topic is very timely for me, as I prepare for what promises to be a crazy summer.

As I talked about in my last post, I have a lot of traveling to do this summer. Most of it is for my dissertation research. I never intended to have a dissertation topic that would require me to travel, but that’s just how it ended up. So if I want to have a dissertation, I have to travel to the source.

With the exception of one trip that hasn’t been scheduled, and could wait until fall, everything else that is happening this summer has to be done this summer. Or I will derail my timeline for finishing graduate school.

In graduate school, summer is a time to relax and recoup. Just kidding. Is it really? No, not at all. The summer after my first year of graduate school, I had a research intensive internship. The second summer I taught and studied for my first preliminary (comprehensive) examination. The third summer I taught and completed my second prelim. And this summer, I am teaching, will be traveling extensively in July and August, working on all things dissertation, and getting used to a new medication (Quinacrine).*

I’ve got nothing going on, right?

Anyway, as you probably already know, if you’ve been following me for awhile, I don’t travel well. No matter how hard I try, I tend to always come back worse for the wear.

For me, traveling is both physically and mentally exhausting. Not only do I have to contend with lugging suitcases, I also have to contend with the endless walks through the airport, the travel between where I arrive and where I’m staying, and all of the other things that go along with it; and my lupus brain also has to be functioning well the entire time.

At my last rheumatologist appointment, which I discussed in my last post, my rheum asked me if I am traveling alone. I know that this is his not-so-subtle attempt to inquire about my romantic life. YES, I’M TRAVELING ALONE. WHAT’S IT TO YOU, DOC?

But I digress. The reality is, though, that I’m not really traveling alone. And when it comes to chronic illness, it’s impossible to travel alone.

Not only am I traveling with my illnesses, and all of the literal and figurative baggage that comes with them, I’m also traveling with a cache of goods to help me be as successful as possible in not killing myself.

I’m planning to do a “What’s In My Bag?” post (or possibly vlog) once I get myself ready to do all of the traveling that I am doing this summer. But suffice it to say, I have been stocking up on everything I could possibly need that is carry-on size approved.

So, in answer to Maria’s question for the next edition of PFAM…

Um…my goal for the summer…Try not to die?

* A note about Quinacrine: While it is in the same class of drug as Plaquenil (Hydroxychrloroquine), Quinacrine is not commercially available in the United States. It is only available at compounding pharmacies, and because it is made up of only one active agent, my insurance will not cover it.

Down Like A House of Cards?

“Do you ever feel like a plastic bag,

drifting through the wind

wanting to start again?

Do you ever feel, feel so paper thin

like a house of cards,

one blow from caving in? […]

You just gotta ignite, the light, and let it shine

Just own the night like the 4th of July

’Cause baby you’re a firework

Come on, show ‘em what you're worth

Make ‘em go “Oh, oh, oh”

As you shoot across the sky-y-y [...]”

- “Firework,” Katy Perry

Things are going okay.

But I am worried, very worried about the months ahead. The reason being is the following list:

I had my last physical therapy session last week, and also saw my GI doc (see post here).

I started teaching a course for spring term last week. It meets Tuesday, Wednesday, Thursday, and goes from May 3 to June 16. I also defended my prospectus on Monday. For those who aren’t familiar with graduate school protocol, defending the prospectus – which is basically an outline of the dissertation – is kind of a big deal.

And I had an appointment with my rheum today.

Given everything that’s done, I still have the following to do:

- May 14 - Arthritis walk
- June 5 - Lupus walk
- Somewhere in between - Conducting interviews for dissertation
- July 2-6 - California
- July 12-13 - Blogger event (location TBD)
- July 14-17 - Illinois
- Somewhere in between - New York
- August 20-23 - Las Vegas (American Sociological Association conference)

I’m putting this list here as much for you as for me.

Can I do it? If you look closely, the beginning of May will be very busy. June won’t be too bad if I use the time when I don’t have anything to do to rest. July is going to be hard being in California one week and Chicago the next. I don’t exactly know where the New York trip will fit in, or if it may even be postponed until the fall.

The thing is, I slacked off a bit this past term. I was on fellowship this year, so didn’t have classes or teaching, and I was able to just cruise. I expected things to fall into place with my prospectus a few months earlier than it did, but I was dealing with family stuff, and then a break-up, so I had a lot going on emotionally.

Ultimately, if my dissertation research gets done this summer, the end result will be what I wanted. I guess it doesn’t matter as much how I got there.

I wondered what my rheum was going to say today when I told him about my summer schedule. But there’s not much I can do about it. I could drop the conference in August, but that’s not even the biggest concern at the moment. The concern is that I don’t travel well. My body takes a beating. It looks like Prednisone is going to be the go to.

I admit, I get an adrenaline rush. This must be what you used to carry me through, from a summer internship at a newspaper working 100 plus hours per week to writing a 125 page honors thesis. But it doesn’t work anymore.

I get it for a time, and then I crash.

I really see now how I used to function before. It’s like episodes of freakish productivity. And when I wasn’t sick, that was sustainable for much longer periods of time.

It frustrates me. I want to punch something. I can’t be the person I used to be, but in some ways, I don’t know how to be the person I am now. How do I get done what I need to without killing myself?

Why is that so often our worth is measured not by quality, but by quantity? I would rather do a few things really well, and keep my health, then to do a bunch of things that are only okay.

I truly wonder how much more I can handle. Like what event will be the final straw, will put me over the edge, and will deliver the striking blow? Because I don’t think it’s a matter of if, but of when. When will I not be able to handle it anymore? When will the next heartbreak be too much?

When I feel this way, I’m reminded of how few people get it. How few people care to know. Illness is much less the enemy than my head and my heart. And my heart is far more the enemy than my head. I feel too much, and illness taught me to do that. Illness has taught me that I’d rather be in pain than be numb. But being numb certainly has its allure.

Last time I saw my rheum, he asked if I had the same boyfriend. I was happy to report yes, and honestly thought that at this most recent appointment, six months later, I would be happily sporting an engagement ring. But since I have no ring and no boyfriend, I really didn’t want to have that conversation with my rheum. Why does this make me feel like such a failure, especially when I wasn’t the one who gave up on the relationship?

And I wonder. Will he notice the pattern? Patient seems happier and healthier when in a relationship.

It’s not that I can’t do life on my own. I can, I do. But I don’t really want to.

I know my rheum to be pretty laid back. He isn’t an alarmist. So today was weird. We had a few good laughs, but he has some serious concerns, about what seems to be a chronically elevated diastolic blood pressure (like we’re talking in the 90s) and heart rate. He’s worried, given the propensity for those with lupus and rheumatoid arthritis to have cardiovascular problems. 10 tubes of blood, and three urine samples later, my rheum is going to wait for the results, talk to my PCP, and get back with me before I fly the coop to do everything that I have to do this summer.

But I can’t keep doing this. I can’t keep saying my health is a top priority and then treat it like an afterthought. Something’s gotta give. Or I’m going down like a house of cards.

Physical Therapy Redux: “It’s All In Your Butt”

The theme for the next edition of PFAM is memorable advice. I think my experience of physical therapy over the last few months fits well with this.

Besides the colonoscopy and defogram, this has been the worst experience I have ever had in the medical system.

Not only was the physical therapy itself uncomfortable and antiquated, but I felt like my physical therapist and I were living on two different planets

“At least now you know, it’s not all in your head, it’s in your butt.”

Yes, that lovely phrase was spoken by my physical therapist. I’m not sure whether to laugh, cry, or smack her. Or all three.

Overall, the experience was a little too touchy-feely for me, literally and figuratively. I have never been one of those people who can really zen out or find mindful breathing to be helpful. It’s just too much granola hippie-ness for me. Or maybe I’m just far too high maintenance. Either way...

My physical therapist and I engaged in a variety of conversations. Thank goodness for the distraction, because it’s not like I could just pretend that her finger wasn’t up my ass.

After telling my PT that I was Jewish, she started spouting off Christian verses. Holy uncomfortableness. I think it is probably the most unprofessional thing I have experienced at the hands of a medical professional.

And it’s hard to commune with a part of your body that you can’t see, and is only used to evacuate excrement. I’m pretty sure even if I could see it, I wouldn’t like it very much.

I know, maybe I’m being too much of a hard ass.

But I’m supposed to be getting in touch with my bottom-side. I’ve tried to be as open-minded as possible during this process, if for no other reason than to hope that it helps, and that all of the uncomfortable-ness was worth something. And in some ways, it has helped; and in other ways it hasn’t. (But I won’t go into that in depth, because I fear, my dear readers, that I may have actually found something that is just TMI for you…and for me…)

Truthfully, I counted down the days until therapy was over. And today, it finally was!

I also coincidentally had an appointment with my GI doc today. This is the woman who I have seen randomly at the hospital and there’s no recognition on her part. Well, today she came in and asked how my Crohn’s is. I said I don’t have Crohn’s. Colitis, she asks? And I’m like no. And she says she should probably look at my chart. And then she’s like, oh yeah, you have lupus and rheumatoid arthritis. All those autoimmune diseases just run together.

So the outcome of that appointment was that I need to have another colonoscopy. But should I really trust this doctor to do it? I just hope she knows which end is up…

Are you the butt of every joke? No, but my butt is!

I’m laughing so hard I can’t go on…