My head split open, I threw up… and then I found my Christmas spirit

I found my Christmas spirit. I was laying in bed the other night, pretty much dying of a migraine, when I realized I have a lot of people who love me: my mom made me ice packs and stroked my hair while I cried like a two-year-old who has skinned her knee, Mike tucked me into bed before he went to work, my dad sacrificed the TV so that my brain would stop feeling like it was swelling, and my cat snuggled up with me as if to keep watch. With all of that love, who cares whether I’m broke! Sounds magical, right? There was also throwing up and screaming. Trust me, it was not up to Disney standards. It was only my fourth migraine, but I swear each one is worse than the last.

Definitely puts things in perspective.

Apparently I’ve also never mentioned them to my mom before, so she wants me to tell Pam (my PA for those of you who are new) next time I see her. It may or may not have anything to do with the Mystery Autoimmune Disease, but they could probably give me good drugs for the next one — and there will almost definitely be a “next one.” I spent from 4:30 Wednesday night to most of Thursday in bed; even though I woke up and only a small, threatening headache remained, I was completely exhausted and decided what I needed most was rest.

Then, last night, I risked having another massive headache by going out and getting completely sloshed with a bunch of friends for Sandy‘s birthday. (I am so grateful to her for buying my drinks. I’m definitely getting her an awesome birthday/Christmas present.) I was so drunk that, when I woke up this morning before the sun was even up, I was still drunk, and when I woken up again around eight, I was tipsy. I woke up again at noon and was fine, though, so I guess I’m pretty lucky. I’ve only been hungover once and I intend to keep it that way, but last night I guess I tried pretty hard to get one! I know my limit, though, and stopped after… five drinks and two shots: two orange juices with Peach Tree and vodka, two shots of raspberry chocolate wine, and three vodka collinses. Eep. Yeah, I’m pretty damn lucky!

Oh well. I figure, I’m twenty-two, and pretty much have to do this. I enjoy it and enjoy the company. Our group always has a blast.

So yeah, if you see a video of me singing “Wannabe” with a couple of hot chicks, don’t be surprised. I was way too drunk to say no when Jess suggested it!

The pieces

Cyanide & Happiness: Test Results

Cyanide & Happiness: Test Results

I just got off the phone with both my regular’s doctor’s office and my new rheumatologist’s office. Melissa — from my regular doctor’s office — told me that my vitamin B12 levels are low again, and that my ANA is positive. The pieces are finally fitting in: a high, positive DS DNA count, potentially chronically low B12, and now a positive ANA.

I called my rheumatologist’s office to make an appointment, and made one for Friday.

Friday.

The receptionist commented that I’d just seen Dr. Memet — the one who told me to see a psychiatrist — a little over six months ago. I had to bite down on my tongue, but trust me: I’ll be seeing Dr. Memet again after Dr. Cooper gives me my diagnosis.

I have a feeling that this is it. The answer is just ahead. I’m afraid to get my hopes up, and I’m also afraid of what the answer is. So far, I’ve been dealing with the unknown. It’d be nice to know, so that I don’t have to wonder at every thing my body does. It’d be nice to have a treatment plan, if any is available. It’d be nice to say, “I have [insert autoimmune disease name here],” instead of, “I have some kind of autoimmune disease,” when someone asks me about my health.

I’m trying to stay calm. I’m also trying to weed through my emotions, to decide what exactly I’m feeling (or even how I should feel).

Is Lupus the answer? Is there more than one answer, as is so common with autoimmune diseases? I don’t know. I just know that this might be it, that my quest for an answer may be nearly over. When it’s over, a new quest will begin. The Mystery Autoimmune Disease will have a name, and I’ll have to figure out how to live with it; once I know what it is, I’ll have to learn how to best manage it.

I’m probably getting ahead of myself here, but I can’t help but feel like the answer is just ahead. I hope that Dr. Cooper can put the pieces together and solve this, once and for all.

A step forward?

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.

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.

It's Monday

I am pretty sure there isn’t a single person who had a good day today. And if you did, don’t talk to me. (;

I started off the day tired as fuck, but what else is new? I dragged my ass to my aunt’s for work and got started. Two major things ruined the first half of my day: my laptop crashing over and over (hello, blue screen of death), and GoDaddy* being the worst host ever (after Yahoo).

Then Mike called me with an update on the whole bank fucking him over situation. And when I say they fucked him over, they FUCKED him over. Not only did they lose his check, but they also proceeded to freeze his account and BLACKLIST HIS NAME ON THE CREDIT BUREAU, after allowing him to withdraw money from a check that they never cashed. They didn’t even notify him of any of this; he found out a week later when his debit card suddenly stopped working. One of their associates at the branch we use treated him like shit when he went in to try to rectify the situation.

Thanks, Webster.

Flash forward to today. He finally got a reissued check and went to go cash it because he wants to fix the(ir) mistake. He called and made an appointment with the branch’s manager, Ruth, and then showed up on time to meet with her. The associates there told him no Ruth existed, and then proceeded to tell him that the manager of the corporate branch doesn’t exist, either. I’ve heard the guy’s voicemail greeting; he most certainly does exist.

I left work early so we could try to cash the check at another bank, but they wouldn’t. We thought they were affiliated with the bank the company he works for uses, but they aren’t, so we ended up just depositing it in my Webster account. He has to wait for it to clear, but at least he’s on his way to getting it taken care of. The poor guy just wants to fix his standing with the bank, and they’re making it very difficult for him.

We did a little shopping**, then went to the pharmacy to try to pick up my prescription again***. My PA-C was supposed to fax it in when I saw her on Tuesday, but either she forgot, or the fax got lost, so when I tried to pick it up Friday, I couldn’t. I called my doctor’s office this morning, and the receptionist said they had definitely faxed it over Tuesday and that she would have Pam call or fax it in again.

Well… No prescription. I wouldn’t mind, but I’d rather buy the prescription than buy only a fifteen count for almost $20. And since I have post-nasal drip, I’m getting nervous that it might go into my ears or chest, and I’ll end up with yet another damn sinus infection. I’m going to call again in the morning, and see if I can pick up the prescription slip and drop it off myself, because this is getting ridiculous. Either my PA-C is getting forgetful — which isn’t like her since she is usually on top of things — or my pharmacy is losing the prescription over and over (which is entirely likely, considering they’ve messed up my prescription pretty badly before).

Today’s only redeeming qualities were having dinner with Mike at the mall, buying pretty things at Victoria’s Secret**, watching football as I write this, and the tea I’m drinking now.

Gotta see the positive, you know.

How was your day?


*I use Host Gator, but most of my clients use GoDaddy (or Network Solutions, which is just as bad in my opinion).

**New GIRLS ONLY post coming soon!

***I owe you guys a post on my doctor’s appointment last week. Sigh. My PA-C prescribed me Claritin-D, because I have post-nasal drip — as usual — and a prescription would be cheaper than buying it over the counter, since I only have a copay.

Can we fill in the blank now?

So this afternoon I saw my PA-C, Pam, for the first time in… since before March. Yeah. I’m not proud of my laziness as a patient — especially as an undiagnosed autoimmune disease patient. I was kind of afraid she wouldn’t take me seriously anymore, since I should have at least called the office and told them I’d stopped taking Seroquel and maybe tried setting up a sooner appointment, but here we are. She didn’t treat me any differently from normal, though, so I get a cookie for being extra paranoid.

I always enjoy seeing her. She doesn’t look at me like I’m probably lying. She takes all of my concerns seriously. She always has a game plan, and she’s always willing to investigate my theories, even if I’m wrong. I’ve written about my love for her before, but I cannot say enough how awesome she is. My appointments are never stressful.

Today we talked about why I stopped taking Seroquel, how I’m doing off of it (fine), the difference between laxatives and stool softeners (the former is addictive and the latter will actually help me), how Costco Tylenol is my new best friend but she’s going to have my liver tested a couple of times a year (being that I’m taking it nearly every day), and how my optometrist thinks I could have Sjögren’s Syndrome. Pam is sending me for lab work to check my B12 levels again (just in case, considering I’ve been really tired lately), and to check for Sjögren’s (ANA, double-stranded DNA, and something else, I think).

I know better than to get my hopes up at this point, but pleasepleaseplease let Sjögren’s be the one. Please. I just want a freaking diagnosis; at this point, we* are treating me symptomatically:

  • (Costco) Extra Strength Tylenol for joint pain;
  • Extra fiber (Raisin Nut Bran, oatmeal, granola bars) for irregular bathroom patterns (even though they aren’t helping, which is why I’m going to try a stool softener);
  • Wet and hot — heh — facecloths or tea bags for my styes;
  • Gloves as soon as it starts being less than 50° out;

and anything else as it comes or someone* thinks of it. I know that whatever it is, it’s never going away. This is for life, baby. But I need to know what it is. I want to move on with my life. I want to know what effects it could have on any future pregnancies, if it’s hereditary… I want a family, and I want to be certain that it won’t cause any complications. I also want my sanity; if I have a diagnosis, I can say, “I have ____.” I can go visit Dr. Memet — the rheumatologist who suggested I see a shrink** — and tell her to fuck off, because I have ____. When someone asks me what’s wrong or about my medical history, I can explain it in a few words instead of listing a bunch of symptoms and explaining it all: “I have ____.”

We’ll see. First, I have to go get the blood work done, and the funny thing is, I haven’t done it in so long, I can’t remember where to go!


PS: I know I’m behind on comments again. I’ve read them all as they came into my email. I’m just too lazy to respond, honestly. I keep saying what my sister used to say when she was three and my mom was potty training her: “Not now, maybe later.” :D


*Me, Pam, my family, friends, strangers…

**After seeing me only twice, once to order blood work and again to give me the “everything’s normal” blood work results