Tag Archives: doctors

More than a patient

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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.

*I just drank some coffee with a laxative, though, so that double whammy should totally fix me up. I hope, anyway. The laxative I took last night helped a little, but not much. Whatever Mystery Autoimmune Disease I have is totally fucking with my GI system. I bought some fresh broccoli and cauliflower today to snack on (along with some baby carrots) for the next few days, so hopefully that will help.

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.)

The pieces

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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?

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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.

And the weird thing on my face is…

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Last night I decided to call my doctor’s office first thing this morning. I didn’t expect them to fit me in today, so I was ecstatic when they told me I could see someone at 11:15. My PA, Pam, was on vacation this week, so I made an appointment with Dr. Afonso. When I got there, Dr. A was backed up, so they had me see the other PA, DeAnna, instead. It didn’t matter to me at all, because I’ve heard nothing but good about everyone at my doctor’s office.

DeAnna was really nice. I told her why I was there: itchiness all over for the last two weeks without any bites or rashes, and the mystery rash on my chin. She took a look at it, then looked at my arms to double check for anything else, but didn’t find anything. She said it could be a staph infection — and as soon as she said the S word, my eyes bugged out — and reminded me that staph and strep live on our skin (and that it’s normal), so it wasn’t too big a deal.

She said she’d give me Prednisone, Atarax for the itching, and Altabax, an antibacterial cream.

I told her how I’d been concerned that it could possibly be related to the Mystery Autoimmune Disease, and I swear I heard her brakes as she began to create a plan of attack. (It must be part of my doctor’s office’s protocol, to always have a plan, because Pam does it too, and that’s one of the things I like about her.) She asked me more about my symptoms and the different tests I’ve had done, and decided to order more* blood work and a urinalysis (for my liver).

I went to Quest Diagnostics, got just under a dozen vials taken, peed in the damn cup**, and was out of there fairly quickly (you know, after walking around the building trying to find the office because I couldn’t remember where it was).

I know this is going to sound silly, but once again, after spending last night doing research on eczema and psoriasis for hahas, I convinced myself that this would be an important part of the puzzle, and that whomever I saw would figure it out. They’d have an “AHA!” moment, and I’d be diagnosed. Voila, just like that. I know I do this to myself and that I set myself up, but I was still disappointed when I walked out of the doctor’s office with no answers. We don’t even know what is on my face!

I’m glad I did go, though, because this morning I was trying to talk myself out of it. “You’re just being dramatic,” I told myself. “Don’t call. It’s probably just eczema and you’re going to feel silly.” I’m glad I listened to my gut and got it checked out.

I really, really hope that this round of blood work comes back with some answers. I know there are only so many times I can say it, and only so many times other people will hear it, but I really, really want to know what is going on.

Anyway, tonight I’m hanging out with my sister and watching Dollhouse and One Tree Hill on DVD. I’m going to need to make myself some coffee, though, because the Atarax is making me really sleepy. DeAnna said it might, but holy shit, I didn’t expect it to be this strong! At least I’m not super itchy.

*I had decided to get the Sjogren’s blood work done after my appointment, because it is way overdue.

**Peeing in a cup is a bitch when you are a woman. I almost always pee on my own hand.

Can we fill in the blank now?

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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