It’s 3:17 PM, Eastern Standard Time. I’m currently resting against a mountain of pillows in an old camp shirt and my underwear, with my bad leg hanging off the side of the bed. And this is how I will spend the rest of my Saturday. My room has been carefully crafted to be my own haven. It’s like an apartment in my parents’ house. And this is exactly why. Pain, of any kind, has shaped my life in more ways than I can possibly describe. Depression and anxiety, Borderline Personality Disorder and an unhealthy relationship all warped my vision and molded my way into this twisted little…golem that I am. Whether or not progress has been made is controversial. Some days are better than others. And then we have not just days, but entire weeks, where a series of events combined to create the perfect mixture that completely blows up in my face and shakes the weak foundation I seemed to have constructed with my new coping skills. What do I do now? Well, first, I PMS like it’s nobody’s business. I have been on a mood-swing rampage, up and down like a Katy Perry song, Dr. Jekyll and Mr. Hyde-ing my way through this week. I cried the other day while watching a program on the History Channel with my dad about pencil-making. Because it was so beautiful, intimate, complicated and yet, simple at the same time. No, because I am an emotional wreck. Let me start the week off and explain where this whole train of thought is going…(there are a lot of cars on this sucker, just a heads up!)
Monday- I had to drive Thomas to campus so he could buy his textbooks for the upcoming semester. Piece of cake. Well, if that cake were rotten and molding. Thomas’s campus is down the highway from us, like a 45 minute drive, not so bad really. I didn’t know that I would have to pay the toll though, and with the last scrap of cash I had we continued down the road. Once we got there, I had to walk, with my bum leg, clear across the main mall of the place to get to the bookstore. Alright, I’m inside, there’s air conditioning so it doesn’t seem so bad anymore. All we have to do is get his books and get out. Well, it would be that simple, if only Thomas knew what books he was buying. Countless time on the sample laptops, and struggling to find the world’s most well-disguised staircase, we bought the necessary textbooks, headed back to the car (another trek, this time with 30 extra lbs) and left. Well, we weren’t done. I received a scholarship from my church, which I had to pay in person at my school, conveniently located down the road from Thomas’s school. It’s like smack between Thomas’s school and our house. Well, once we were there, I took care of my parking issue (I couldn’t register my car without certain clearance…psh, whatever!), we were forced to walk back and forth, up and down and then clear across campus (again! Different campus but it still counts to my leg!) to put my scholarship money towards my bill. After that, I was exhausted. I hurt to no end and I was pissed beyond all reason, well, because, that day was a lot for a whole little!
Tuesday- My trips down the Interstate weren’t over. I had an appointment with Dr. Glover, whose office happens to be located right next to my school. Lovely, right? Head down there, get what I need from her (okay, she’s a legit doctor I swear!), and then head home to do what? Sleep! Sounds like a nice time, but for me, sleeping can be the enemy. I laid down at about 2:00 to take a nap and didn’t wake up until about 9:00. That’s your night’s amount of sleep, and I just spent it all in the daytime. Um…what am I going to do when the house is dark, my foot is hanging cold and frozen off the bed because it’s too sensitive to put under the covers and I just want to sleep like a normal person? You guessed it, I tossed and turned, finally giving up to get up around 5:30 the next morning.
Wednesday- Ha! Okay, this is probably the worst day of the week. It’s interesting that it happened smack in the middle of the week but, I guess it was supposed to be the peak of this week’s adventures. Throughout this week I was receiving messages (which turned into texts) from Bridget, one passing a message to Allison (since they are no longer speaking) and the rest were just conversational. Like I said a few weeks back, when we hung out the first time, I wanted to become her friend so I guess I sort of did. Anyway, things escalated like the virus from the See-Through Zone on Bravest Warriors. I tried to throw a blanket over it but, alas, my attempts were for naught. It (the friendship/peaceful negotiations) was lost and the ship (see, that’s where my head gets sort of turned around, not really sure what the ship actually refers to. The friendship? That moment? The situation? I don’t know but trust me, I didn’t forget about it) had to be abandoned. I got way to emotionally invested and involved, Allison did some things that pissed me off, hurt me and just, insulted me. I called her, yelled at her for it, then talked to Bridget for a while. As usual, I thought I had handled it pretty well. I was really upset about what had happened, but I was pretty confident that I handled it to the best of my abilities and could do nothing more. Well Mouth, tell that to my Brain. That night, I woke up every hour, almost exactly on the hour, distressed, scared…it was a big ball of emotions that was stuck like a hairball in the back of my throat. I couldn’t get it to go away. But that’s not all! Step right this way folks, and listen to the rest of my atrocious day! I had an appointment with a pain clinic that morning in the city in the hopes of finding someone that would treat my CRPS. I’m still flaring, with no doctor to treat it, and no relief. I get there early, they call me back, the usual appointment stuff. When the doctor, actually a resident, came in, he threatened to cancel the appointment that I was already sitting in the office for because I had a positive tuberculosis test in June. I had it done for school (you know, the litany of forms to fill out), but a positive test doesn’t definitively mean you have tuberculosis. Those things can react to being scratched, sweat, sometimes even just wiping the blood away after being injected. In other words, I do not nor have I ever had tuberculosis. And this dude let me drive all the way down there and then tried to cancel the appointment. Why didn’t you read my file, the reams of paperwork I sent to you beforehand at your request, before I came? You would have known then and would have saved me gas and time! He runs out of the room, talks to his overseeing, and comes back in, dangling a face mask in front of me like I’m radioactive or something. Alright, you’ve already lost points. Can you redeem yourself? He sits down and starts to take my history, but as he writing stuff, he’s not listening. He’s trying to follow what I’m saying and is instead putting in his own dates and notes where he wants to. It was confusing me to the point that I just let him do it after a while. The CRPS wagon has seen it all. I’ve been to so many doctors, hospitals, specialists and clinics that I have literally lost count. I don’t know where I am on the list of people who treat this disease. And now, neither does he, because he wanted to say I had the most recent nerve block in 2013, when my last one was really in 2010. More points being shaved off by the judges, I don’t know if he’ll recover from that one! Oh, he won’t. Because next was the physical exam. And doctors who have treated this before tend to know that you have to be super gentle, almost like you’re examining a black mamba with scorpion spines all over it. Residents? They are like handing a 5-year-old the Queen of England’s finest crystal. They are rough and impossible. I was crying by the time he was finished. As he’s stripping his gloves and leaving to discuss things with the doctor, he tells me that a topical cream might be the best option for me. Well, now the tears are flowing twice as hard. I’ve tried every trick in the prescription book. I’ve done pills, patches, creams, TENS, physical therapy. I’ve done it all. And no one, and I mean no one will give me the big guns. They aren’t taking me seriously as a patient. They aren’t letting me help in my own healthcare and I get so frustrated, pissed off and just crushed every time one of these appointments goes south, I can’t participate without becoming hysterical. Mysterious Doctor (the one Resident has been visiting every 5 seconds outside the door) comes into the room and reexamines my leg, this time telling the resident that you have to be super gentle. MD (haha, Mysterious Doctor) barely touched me during the entire visit. Resident, on the other hand…argh! Then, after what felt like no time at all, he decides I need another nerve block done. I took a deep breath, swallowed my freshly sprung tears and calmly told him that the last two I had didn’t work. Well, he calmly reported, they didn’t include temperature changes so there’s no way to know they hit the correct ganglion. No interest in the fact that it didn’t work, no interest in the fact that my back is also in pain, no interest in the fact that sometimes procedures like that can actually make CRPS spread, or become worse, no interest in the fact that he knew nothing about my case. I sent in all of that paperwork, I did all of that calling and back story, the work, the research on myself, to find out dates and the who, what and where, only for you to already have your mind made up about what you were going to do before I set foot in your office. Thank you…no, you know what? Fuck you. Oh, his final parting words? I will need a clean chest x-ray to prove that I don’t have TB before they can do the procedure. This was my Wednesday. Okay, I’m lying, it didn’t end there. I tried to meet up with Jackie for lunch because she works in that same area. She told me it would be fun if I didn’t mind waiting. And wait I did. Her lunch break came and started, and started to go. Without Jackie. Text: Is there somewhere I can be so you don’t have to trek as far? Reply: I don’t know if I’ll get out on time today. Text: Tell me now, should I leave? Reply: Convoluted reason about why she’s late. Text: Same message as before. Reply: Yes. Okay, see I wouldn’t have had as much of a problem with the whole outcome of the situation if she had just said it was a bad idea in the first place. I wouldn’t have been offended if she said no. Instead, I waited 2 1/2 hours of my life, sitting downtown, waiting for her to tell me she wasn’t taking her lunch break on time. Awesome.
Thursday- Because of my miserable day on Wednesday, I was just expecting everything to continue to sink deeper into the mud. Well, surprisingly, I was allowed to come up for some air. Devochka, one of the pages at the library, was supposed to hitch a ride from me when I went to my usual appointment with Allister because she had some business in that area. No problem, she paid me gas money, we’ve done this before so it’s all good. Well, Allister canceled my usual time but was still planning to have group. Devochka didn’t care and was willing to hang out like it was our usual Thursday. I picked her up, we drove down, had lunch, got coffee, walked around the mall. I felt semi-normal for once in a really long time. And part of the reason was just because she listened to me. I whined and complained, I confessed all my deepest thoughts and regrets about this whole Allison/Bridget situation and Devochka heard and understood every thing I said. She was there for me, when no one else was. I can’t describe how much I needed something like that this week. She wanted to stick around and hang out longer, but I knew she had to go somewhere so eventually we split ways. Rather than hang around and wait for group, I just headed home. I wasn’t sure group would actually make me feel better. Sometimes it only succeeds in pissing me off. And trust me, it’s not like that was super hard to do this week. I disobeyed orders, mostly Devochka’s (even though once I told her my reasoning, she totally got it), and headed home. Once at home, I didn’t really have any better of a time but at least no one else was physically injured in the process (there are some people I would really like to punch right now).
Friday- After a better night’s sleep than the night’s before, I got up, took Thomas to an event he and his friends were attending, then got home and had no clue what to do with myself. That’s where the crying about pencil-making comes in. I ended up hanging out with my dad most of the day, then picking Thomas up, feeling every emotion that is listed on the Facebook “feeling” option tab. Not cool.
And now, we sit here. My pillows, my laptop, my phone and the endless expanse that is the Internet. Now, what does any of this have to do with pain? The weak foundations I mentioned a week ago (ha, no it was earlier this post), were rattled and seriously damaged by the storm that was this week. I think a lot of it was caused by internal pressure (PMS), but a lot was outer. I don’t have strong friendships. Because of my past (I sound dramatic), I don’t know how to form the best bonds with people. When those bonds are tested, most of the time, my first instinct is to break them. It’s to break them and run as far away as humanly possible. However, not always the best option. Especially since I had a gimpy leg. I’m not going to get very far. When it starts affecting my sleep, we’re having problems. My physical pain, like I mentioned before, is through the roof as well. Random points in my body hurt, as well as my back and my leg. And it seems like no one is able to fix it. I’ve always relied on the physicality of CRPS that made it easier for people to accept. But, they don’t. There are no physical signs, except outward symptoms, bone loss and the patient’s description of pain. When that patient has a history of psychological problems however, what are we supposed to do? Believe her? That would be…well, insane! The pain this week is tough, but at this very moment (I can’t speak for any other day of the week), I’m tougher. I’m not going to let idiots disguised as doctors dictate whether or not I am successful at what I do because they believe I am in pain. I’m trying, trying, not to let other people so very close to my internal organs so that when the timer goes off, they manage to hit every single one of them at once, causing total internal failure. There’s been a lot of pain this week. But there sure as hell as been a lot of Lucy, too.