Don’t be surprised if I start doing only vlogs! I’m loving it. I like my webcam much better than the regular Kodak, though. I hate that my Kodak auto-focuses and you keep hearing that weird sound as it does it.
I had a bad day yesterday. It wasn’t the whole day that was bad, though. It was more like a bad moment. I got into a big fight with my sister, over something really stupid, and it wasn’t until after that I realized what was wrong. I was (and still am) anxious about next Tuesday’s appointment with my rheumatologist, and hadn’t had a cigarette in a couple of days. I’ve been sick with a sinus infection, so I haven’t been smoking, and the night before last, I decided to try to just quit. Apparently it’s easier when you accidentally quit.
The anxiety from both was affecting my self-esteem, so I was overly sensitive to some things she said, and overly sensitive after the fight itself. I was also super angry, for no reason. I was literally seconds away from hitting her. I’ve never wanted to hit someone like that. Because I didn’t want to hit my own sister (especially over shoes that I’d tripped over), I left the house and went to the gym instead.
We were both immature, but I was not proud of myself for letting my emotions get that out of control. You probably wouldn’t have been able to tell by looking at me, but it took every atom in me to refrain from slapping her. I am not an angry person. Sometimes I’m super impatient, yes, but I’m not angry — and I’m not violent.
I realized something important: In order to be good to others, and to feel good on the inside, you have to be good to yourself. We all have some kind of demon, whether it’s depression, chronic illness, or something else. It’s important to care about ourselves and do little things… like dressing up the outside, to feel better inside! Today I woke up, took a shower, dressed, and did my makeup — even though I didn’t have any plans to go anywhere.
Feel good on the outside, and you'll feel good on the inside
Dress — Charlotte Russe, $10
V-neck tee — Forever 21, $3.80
Lace tights — Charlotte Russe, $2.99
Thigh-high socks — Charlotte Russe, $2.99
Boots — Charlotte Russe, $20
Bangles — Charlotte Russe, $4
Necklace — Target? I bought it a long time ago
Sanity — Priceless
I know I don’t look too excited in the picture, but I feel great.
I fucking love Bare Minerals.
I also used my new Bare Minerals makeup for the second time. I feel like this time I did it much better than the first. Dark circles and shiny forehead? Me? Don’t know what you’re talking about! (The eyeliner and mascara are Maybelline, I think.)
I bought a few skirts this weekend, as well. Since I don’t fit into jeans very well right now and refuse to buy another size up, I bought skirts (with stretchy bands), tights, and thigh-high socks so that I can wear them in this cold and still be warm. Just the small act of buying clothes I fit into makes me feel so good. I also bought a new bra, another size up, so now I don’t feel like I’m suffocating.
I’m still working on losing weight, yes, but now when it comes time to get dressed, I’m not seconds away from a breakdown because nothing fits. If you’re trying to lose weight, too, I found Elessa’s tips really helpful:
I especially find the tips on eating — such as imagining a line across your plate, and making your meal last twenty minutes — really helpful. I really love food, so when something is good, I will just swallow it down. I’ll have seconds and even thirds, whether I’m full or not. I also like the idea of getting a kids’ meal if you have to have fast food. We all know how much I love my Burger King cheeseburgers! And, I agree that you shouldn’t deprive yourself; if you’re having a craving, Elessa says to just have a little bit, instead of not at all and making yourself want it so bad that you overeat.
I don’t believe in New Year’s resolutions. I believe that every day is a fresh start. I’ve been trying to lose weight for a while. I’ll get serious for a bit, then fall back into old habits and complain about my clothes not fitting. I’m serious, this time. I’m creating new habits, and being good to myself. Anxiety can take a fucking hike.
How do you treat yourself?
I’ve noticed that I’m really sensitive to other people’s moods. Their energy tends to crash into me, especially if they’re anxious or angry.
People who are overly anxious or angry make me nervous. I can’t stomach being around them. I don’t know why, but their energy makes me feel like I’m under attack, and I always want to flee. I can’t seem to block it, either. It’s the weirdest thing… Does this happen to anyone else?
Anyway, I’ve finished the first draft of Sade On the Wall, at 52,022 words. For those of you who cheered me on, read every word, helped me think of words when I was blocked, encouraged me to keep going, and encouraged me to take a break when I needed it, there’s a note for you there. I thank you all, from the bottom of my heart.
It feels amazing to have finished this project. I mean, I need to go back and fix a couple of scenes before I can truly say that the first draft is really finished, but it feels absolutely amazing. This is only the second novel I have ever finished… and the first I actually like. That being said, I’m absolutely sick of it now. I can’t wait to fix those two scenes, but I need some time before I can stomach it. I love my characters, but I’m sick of them! Isn’t that weird?
I’m feeling a lot better now after what happened this morning. I’m still pissed about it, but it’s not giving me an ulcer anymore. I’ve been so stressed lately, between my health and work, that I just feel awful most of the time. Combine that with being sick from this flareup, and I am having one hell of a solo picnic. I don’t think some people in my life understand how all of this is affecting me. I mean, I don’t expect people to throw their sympathy at me, but I’d like a little more understanding from a couple of people.
I’m trying to make some changes in my life though, that I think will be better for me in the long run. I’ve been putting everyone else first, and Sandy is right: It’s time to do me. I can’t go on the way I’ve been. I’m twenty-two years old, and yet I feel like the stress from everything is going to kill me. I can’t change my illness*, but I can change some of the other stress factors in my life. I can only hope that, when the time comes, the people in my life will be understanding.
I know I’m being ambiguous here, but nothing is set in stone yet. I’ve just been doing some thinking and have taken the first step. The rest of it is going to depend on whatever happens.
I’ve discovered during this month, though, that I definitely want to spend the rest of my life writing; I want to write for a living. Writing is my escape, from everything. If it ever gets to be stressful, I’ll leave it behind, but I don’t think it will.
I think I’ve found my calling.
The rheumatologist’s office called me this morning, and left me a message asking me to confirm my appointment with Dr. Memet tomorrow.
I called back and told them I was calling to confirm my appointment with Dr. Cooper, thinking there was some kind of mistake. The receptionist — I think her name was Holly — looked at my information and said that I was scheduled to see Dr. Memet.
“Well,” I said, confused, “Dr. Mongelluzzo referred me to see Dr. Cooper.”
Holly said something about it being their policy to schedule patients with specialists they’d previously seen; since I’d seen Dr. Memet about a year ago, they had automatically scheduled me with her.
“My doctor specifically said Dr. Cooper, though,” I said, repeating myself only because I didn’t understand why it mattered that I’d seen Dr. Memet a year ago.
“I heard you,” she said. “But it’s our policy.” She kept using the word “policy,” and while I get that it’s probably out of her control, it makes no freaking sense to me.
“Well, I’m not seeing Dr. Memet again, because when I did see her, she was not helpful,” I said firmly.
She repeated the whole policy thing, and said that Dr. Mongelluzzo would have to call and verify that he wanted me to see Dr. Cooper insead. She also canceled the appointment with Dr. Memet.
“Okay, fine,” I said, thanked her, and hung up. I called Dr. Mongelluzzo’s office next, explained the situation to the receptionist, and she said she’d call Dr. Cooper’s office and tell them I’m supposed to see Dr. Cooper. She also said I could see someone at Yale or UConn as an alternative.
This all happened within about fifteen minutes. By the time it was over, though, I was shot. My nerves were completely frayed. I just burst into tears. I was so close. I was going to see Dr. Cooper tomorrow morning, potentially start getting some answers, and now I’m not. Now I have to wait.
I know it sounds selfish, but when your body starts going crazy and you spend over three years being told, “Everything is normal,” and you finally get some test results that show more than just a borderline DS DNA and low B12 levels… You just start to feel like someone is playing with you.
My anxiety levels are so high right now, and have been throughout all of this, that simply having to wait to see someone — and having a screwup where you almost have to see another doctor who didn’t listen to you and treated you like a crazy person — finished me off completely.
I kept bursting into tears as soon as I had myself under control, and then something occurred to me: I am more than a patient. I’m a person. I don’t have to let the medical system drag me along. I am in control. I say who I see and who I don’t see. If it takes a little longer, fine, but I want to be the one calling (most of) the shots. I also don’t want to let this kill me. I don’t want to be this high-strung person who can’t handle an appointment cancellation. I want to be strong and take it all in stride.
I am more than a patient. I am a person. I am my own advocate.
♦
I wrote the first part of this about two hours ago. I feel so different now than I felt then, and than I felt this morning. I feel kind of silly, honestly, for crying this morning. For being so fragile. I kind of hate that part of me.
♦
I also kind of hate that all of my posts lately have been about my health woes. I feel like it’s all been whine, whine, whine. I haven’t been feeling too good, physically, though, so I guess it’s okay. I’ve been constipated for days*, had horrible stomach pains all day Tuesday from 4am on, and a little bit of joint pain (along with the dumb thing on my face, which seems to be all cleared up now, aside from a little itchiness).
I guess I still haven’t fully accepted that I’m sick and it’s okay to be sick: to complain about it, to acknowledge it.
So here it is: This is a flareup — the itching, the mysterious rash on my chin, the joint pain, the constipation. This is a flareup, and it sucks. It will probably get worse before it gets better. I guess I’d better get ready for the siege. (And seriously, knowing this just gets “The Royal We” stuck in my head.)
♦
I want to write about some plans, some goals, but it feels weird to throw it in with all of this melancholy, so I’m going to wait.
Everyone has been so awesome throughout the last couple of weeks: Mike, my mom, Sandy, the rest of my family, Blaine, Mary, Jess, Sanya, and a whole mess of my other internet friends — you know who you are — have been cheering me on throughout all of this. I can’t forget everyone who’s been cheering me on throughout my novel-in-progress, either. I feel like I’ve found my place. I have an awesome circle of support and love offline, but I’ve found the same thing online, and it really just baffles me. It’s so wonderful.
♦
Once again, I’ve managed to write a completely all-over-the-place post, but fuck it, I’m hitting Publish.
Speaking of taking care of myself, I also bought a B12 supplement. I’m thinking the rheumatologist — whenever I get to see her — will start me on shots again, but until then I have a bottle of fifty vitamins. Interestingly enough, the bottle says B12 helps with fatigue. I feel kind of silly saying this — because it seems so obvious — but I wonder if my low B12 is why I’m always so freaking tired. (Thank you, Mystery Autoimmune Disease — thank you.)
Today was an emotional roller coaster.
I’m still not sure how I feel.
I woke up a few times throughout the night and this morning, partially because of the medication I’m on for the thing on my face — it gives me the night sweats like crazy — and partially because of my good old bladder. When I finally gave up on sleeping, I looked at my phone and saw I’d missed a call somewhere during all of the tossing and turning and getting up to pee.
I listened to the voicemail. It was a nurse from my doctor’s office, asking me to call back.
Immediately, I was flooded with a nervous anticipation. I knew it was about my blood work results, and I knew they had found something. I could hardly stand waiting as they transferred me from person to person, and when I finally got to the nurse who had originally called me, I almost wanted to tell her to hurry up, this was it, gimme it already! Instead, I clicked my pen on and off.
The blood work that Pam and Deanna ordered.
“We’re still waiting for your ANA results,” she said, seeming to be shuffling through the paperwork. Impatiently, I clicked my pen on and off, on and off. “Dr. Mongelluzzo looked at your results… Your Double Stranded DNA is really high,” she said. “He’s thinking it could be Lupus, and wants you to see Dr. Cooper, a rheumatologist.”
She gave me the phone number for Dr. Cooper’s office, told me to call after lunch to schedule my appointment, and the whole time, my mind was reeling.
Really high DS DNA.
Lupus.
Dr. Mongelluzzo had read my results. You know, the doctor who owns the practice — the one I’d originally wanted to see because he’d diagnosed my aunt’s friend’s Mystery Autoimmune Disease, but couldn’t get in to see for two months, so I made an appointment with Pam instead. Dr. M read my results, when he’s never been involved with my care before. To me, this says that this high DS DNA thing is a big deal.
Dr. Cooper — another rheumatologist.
When I hung up, I leaned back in my chair, my head tilted back, closed my eyes, and tried to decide whether I felt like screaming, laughing, jumping up and down, or crying.
A few seconds later, Mike walked into the room talking about something, then stopped short and asked if I was okay. I still couldn’t decide how I felt, but as I told him what Yuri had said on the phone, the tears spilled over anyway.
The more I talked to him, the more I realized how much I dreaded seeing yet another doctor. Dr. Cooper will be my third rheumatologist. The good news is, the rheumatologist who told me to try a psychiatrist works for the same medical group and is in the same building, so if I do get a diagnosis out of this, I’m going to make sure I pay her a visit.
When I told my mom about the blood work results, she said she’d thought it might be Lupus when she’d seen the rash thing on my chin.
I’m still not completely sure how I feel. I guess I’m kind of anxious, kind of scared, kind of relieved, kind of curious… I’m definitely intrigued by the fact that I seem to get actual results in my blood work whenever I get it done during a flareup of some sort. My DS DNA was borderline the first time it was tested; it was enough to say, “Hey! I’m an autoimmune disease, but sorry, can’t tell you which one or how severe!” This time, it’s practically screaming, which also kind of says, “Guess what? Whatever is wrong with you is getting worse! Hahaha!”
I want a diagnosis… but do I want a diagnosis? What I really wanted was for the PA I saw on Friday to tell me that the thing on my face was just eczema. I wanted to believe that maybe all of these symptoms are just insignificant things, overamplified in my head to make it seem like it’s something, but really isn’t. I also wanted to be verified as a non-crazy person, with something actually wrong with me.
I am a fucking paradox.
I am also sorry that this is all over the place. It’s been a long day.
Also? I miss my Popi.
