I’m a scatterbrain right now, so I will ask that you please excuse any run-on sentences and poor grammar, I’m usually a better writer than this, but I’ve been having a hard time articulating myself lately. And the point of my blog isn’t to have awesome grammar, it’s so other people can relate.
Tuesday was craycray. I had appointments with both my Neurologist and my rheumatologist. They’re in Beverly Hills, which is a haul from my house, and it feels like a different planet.
If you’ve never been to Los Angeles before, driving through it is a nightmare. People drive like shit, there are driveways coming off all sorts of alleyways people dart out of, the streets in some areas are just to skinny, and parking garages are everywhere, but you have to sit there and read the signs real quick to make sure it’s not reserved parking when you pull in, and the traffic is just madness all the time.
The route to Los Angeles from where I live requires you to drive up a huge hill. It’s very steep, and the quick change in altitude gave me an immediate headache. I was really upset because I actually felt pretty good when I left the house, but the headache I got from the altitude change lasted pretty much until after my neuro appointment ended.
After fighting with this for X minutes, I made my way up to the neurologist’s office, which is located in a tower of Cedars-Sinai. The waiting room is small and windowless, and the staff sits behind a privacy glass window which they open once in a while. It feels very cut-off from the rest of the office. My mom and I were sitting there for about 10 minutes, and a very old smelly woman came in and tapped on the window, asking to see one of the doctors, who was not in. As she was standing there talking to the staff, I swear on my life, she shit her pants. Seriously, I’ve never even heard my dog fart like that. I felt bad for her, but I felt bad for me, too. As I said, the lobby had no windows. Luckily, I was called back a few minutes later. My mom told the staff, “It wasn’t us!” Welcome to Los Angeles.
I waited in a room for a short time, and then the doctor came in. He dove right into the MRI. I do in fact have a syrinx, in my cervical spine. It’s pretty small, but it’s there. That means there is some blockage in the flow of spinal fluid. He of course does not want to jump into surgery, and I don’t know how to feel about that. He wants to monitor it to see if it’s progressive (which it will eventually be, but the rates at which it progresses is different for different people) So in a few months I will go for another MRI. In the mean time he gave me some muscle relaxers to help with the pain, Zanaflex. I’ve tried other muscle relaxers but always seem to have yucky side effects. I’ve taken this one 2 nights in a row now and it seems to be ok. We’ll see. It makes me really tired so night time is the only time I can have it, unless I’m in so much pain I’m willing to sleep all day to feel better. He suggested some physical therapy too, which seems to me would aggravate pain, but whatever. I don’t have to do it if I don’t want to, all I know is when someone touches me it makes the pain worse. I explained to him that I’m in pain all the time and everything seems to give me a headache, and it’s ruling my everyday life. He listed some activities I shouldn’t do, lifting things, extreme sports, roller coasters, all things from which I have already naturally restricted myself because it just doesn’t feel right. After that it was a “see you in 2 months” kinda thing. As soon as the lobby door was shut behind me, I cried.
I think I would have cried no matter what he told me. I’m not entirely sure what it was I wanted to hear, and I’m still not. If he said I needed surgery immediately of course I would have been emotional about it. But I also felt like I’m just tired of sitting around in pain and no one seemingly doing anything about it. I’ve reached a point where the pain is so bad sometimes I would do just about anything to get rid of it, which is why surgery doesn’t terrify me. I wasn’t sure how I was going to go home for another 2 months and deal with this, especially since I got an MRI and waited a whole month to know what the results were. I’m tired of waiting. Someone dangled the “we could actually help your pain go away” carrot in front of my nose and now I find myself wondering when it will actually happen. I was previously used to the “you’ll deal with this for the rest of your life” mentality and now I feel like I’m being teased. Every time I go in to see the doctor now I feel like “Is this going to be the time the help me?” I guess I just need to stop it.
It kind of makes me cringe thinking about having a syrinx, and letting time go by allowing it to get bigger. I hate this idea. I feel like I have a ticking bomb in my neck. The doctor emphasized at how small it is, but my problem with it is that it’s not supposed to be there at all. It causes irreversible damage in the center of your spinal cord as it gets wider. I don’t want to wait until I can’t touch my nose or walk in a straight line, or feel my legs. I want to do something about it right now before it causes more problems. I know the doctor knows more than I do about these issues but it’s hard to grasp their way of thinking when you’re the one dealing with them. Another reason why I feel so conflicted is because I know I’ll need surgery eventually, and I’m a “get it over with right now” kind of person. I’m just kind of tired of laying on the couch. I want to get on with my life.
I had 3 hours or so to kill in between my neurology appointment and my rheumatology appointment. I brought lunch and ate in the courtyard near the rheumatology office. There are a lot of plastic surgery offices in the vicinity as well, so you can imagine the people you see coming and going while sitting there. It’s incredibly intriguing, and kind of sad at the same time.
The rheumatology office is right smack in the middle of Beverly Hills, so I figured since I have never walked around there before, might as well. Man, it’s just so weird to me. People turn down intersections even if people are using the crosswalk, so you have to be careful not to get run over, because rich people got lots of money and don’t seem to care if they hit someone. We walked past this guy on a cell phone and overheard him say “You gotta help me, it fell off over the weekend.” We got a good laugh out of that, and wondered just exactly what “it” was. There are these tour buses full of people in the streets with tour guides talking about all the shops, and the tourists are looking around adamantly hoping to spot some celebrity. I heard this chick on the street say “they’re all staring at us because they think we’re fucking models or something.” Which my mom took her cue to say “no they don’t” as we walked past them. We were probably the only people in jeans and a t-shirt within a 10-mile radius, and I was never so proud in my life. Beverly Hills people, your fashion is fucking ugly. Just because it has a hefty price tag and some designer dude’s name on it doesn’t mean it looks good. I did not see one thing in any of the shop windows I wished for. So so ugly. Good grief.
On Rodeo I saw the apparently famous black and yellow Bugatti. I didn’t know it was a landmark at the time, I just thought it was a good waste of an expensive car because of the fugly paint job. I tried to take a picture for my brother but the second I whipped out my camera, this mob of dudes were standing around the car suddenly doing “I’m a douche” poses for their friends cameras, so I just gave up. I found out later it’s all over the internet, so whatever. I just don’t care that much.
All in all, Beverly hills is just extremely obnoxious for us ‘jeans and t-shirts’ types. Don’t believe what you see on TV. It’s not glamorous. It’s like those high school cheerleaders you hated, only on crack.
I was in the Rite-aid, and this chick with bleached-white hair down to her ass, rubber boots, and fake tits squeaked past me. I asked my mom if she came with a beach bungalow.
After a good amount of time making fun of my surroundings, it was time for my next appointment. I didn’t have to wait too long in the waiting room, maybe 10 minutes, and I went back into a room and immediately had my blood drawn. It was kind of weird because I didn’t realize at first what it was for, my head was abuzz from the rest of my weird day and I was just like “ok, take my blood.” I also trust this doctor more than I’ve ever trusted a doctor before so I wasn’t concerned. They were taking blood to make sure the Methotrexate wasn’t doing any organ damage. The doctor came in and we talked about everything that just happened at my Neurology appointment. I also explained to her that the methotrexate isn’t doing anything other than irritate my stomach, and it gives me delayed fatigue, where I get tired a few days after taking it rather than the day of or day after. We briefly talked about doing the mtx injections rather than pills, but she skipped over that and wants to do Benlysta infusions. I was supposed to receive Benlysta infusions as per her suggestion in June, but the insurance I had at the time was jerking me around, which is a long story, but the short version is I have a different insurance now which shouldn’t be a problem for approval. While I’m in limbo, the doctor decided I should have an IV drip of solu-medrol (steroids) to keep any Lupus-related pain at bay. So the staff put the IV in my arm and I sat for about an hour while the bag emptied. It made my arm cold as IVs always do. By then I was really relaxed for some reason, I guess after having a whirlwind of a day, there’s no other state to be in but relaxed. It’s my body’s defense mechanism. I love the staff at my rheumatology, too. You can just talk to them, and not feel like you have to sensor anything you say, and the reverse is true too. It’s just so relaxed. So I guess I owe it to them for helping me feel calm. And while they are doing this, they are also in between phone calls, heckling with insurance companies so I don’t have to do it. I feel pretty lucky to have found this clinic.
So after the IV drip it was time to go. I’ll call soon to find out my blood work results and insurance approval. The steroids unfortunately haven’t seemed to do much other than cause bad insomnia. The first night I was up at 2am with leg cramps and did not fall asleep again. She did say that it would help with Lupus pain and anything left over is probably something else – in my case, the chiari- so I’m thinking that the leg pain must be some kind of chiari-syrinx-nerve-limb thing. Nerve pain is frustrating to try to relieve. It seems impossible sometimes. It makes me wonder if the chiari is responsible for more pain than I realize. It’s easy to just blame it on the Lupus. I’m not sure if I’ll ever really know what causes what.
I hate to jinx it, but the muscle relaxer the neuro gave me seems like it helps some. Like I said though, it makes me a zombie, so I don’t know. Trial and error I guess.