Tag Archives: pam

There are no holes in my eyes, but I might have Sjögren's

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Five hours ago, I left my aunt’s and headed to Walmart for my eye exam. My first, mind you, in three years. I went only because I was pretty sure my prescription had drastically changed, and figured I might as get it over with already before I did real damage to my eyes.

I was relieved when my eye doctor told me that there were no tears — HOLES — in my retinas. I was completely and totally floored, however, when she told me that my prescription hasn’t changed at all.

I am, she told me, a victim of eye strain. Since I spend eight or more hours a day in front of the computer, and as much of my spare time as possible reading a book, my eyes are tired as hell. Since they are also so freaking dry all of the time, the glare while driving at night is worse than it would be for a normal person.

So, my eye doctor gave me special eye drops… and a prescription for bifocals. Fuck. Bifocals?! Fortunately, they’re the kind that are gradual; you won’t see a little oval on my glasses. Basically, they will help my eyes relax more when using the computer or reading. So there’s that.

She also, after asking me questions about my health and hearing my laundry list of autoimmune disease symptoms — especially after me telling her that my mouth and eyes are always dry, and that I get styes and mouth sores all the time — suggested that I might have Sjögren’s Syndrome. Several months ago, I had looked up Sjögren’s and, seeing that the symptoms and my symptoms are nearly identical, asked Pam (my PA) about it. She had said she didn’t think so, and I can’t remember why for the life of me*.

Anyway, I was looking at the symptoms of Sjögren’s again earlier this afternoon, and thinking about my own symptoms, and I think that there is a real possibility that this could be it. The pamphlet that my eye doctor gave me also said that Sjögren’s can come hand-in-hand with other autoimmune diseases, like Rheumatoid Arthritis, so I’m really thinking that I might have Sjögren’s, Rheumatoid Arthritis, and I know I definitely have Raynaud’s Phenomenon, even though no one has diagnosed me with it.

The Sjögren’s website also has a a list of tests a doctor can run to diagnose you. Unfortunately, I’ve had several of these tests done several times… and each time, everything comes back positive. I don’t mind going for more blood work**, but what I really want is to see an autoimmune disease specialist who doesn’t think I am crazy or who isn’t completely out of it themselves.

I guess the real answer here is to go see Pam and see if she can get me into Yale, like Sandy keeps saying I should do. The thought of driving back and forth to New Haven for more tests is not very exciting, but I need to know. I am over three years into this, and cannot even think about starting a family until I know what exactly is going on with my body and how it might affect any pregnancies or mini me’s***.

I have an appointment with her the first week of September, but I’m wondering if I should call and see if I can get in sooner. What do you think I should do?

*I also apparently didn’t blog about this. Grr.

**Although, I noticed yesterday while outside with Mike that I have tiny holes scarred into the inside of my elbow, which I’m guessing is probably from getting blood drawn so freaking often.

***Not that I’m ready to have a baby or anything. Mike and I do know that we want kids, though, so I want this all figured out before then. Mainly I just want to know for my own peace of mind, but I have to know for my future kids, too.

'Cause you'll always be my disease

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Remember how I said all of my symptoms had all but disappeared? The pattern is starting again. It’s the same pattern that’s been repeating the last few months. I don’t get a lot of pain with it, but I get a lot of intestinal issues. And the last few months, it’s been following the exact same pattern. There’s something definitely going on here; I wonder why my symptoms have changed? I traded chronic pain for occasional aching, twinges and bad stomach aches. I’ve also been noticing that, right at the beginning of this new pattern, my blood sugar will be really low for a few days; it easily drops and leaves me feeling nauseous and almost unable to bring it back up again.

This is exhausting. I’m trying to stay positive. Really, I am. But seriously, every time my symptoms start up again I feel frustrated and depressed. I went through grueling colonoscopy prep and the colonoscopy itself in the hopes that I would get some answers, and I got no answers at all. Not even a single hemorrhoid was found. I’m left sitting here thinking, “What the fuck!”

Even worse, as I write this, I feel like I have to apologize for the gritty details and the lack of sunshine around here. So many of you have stuck with me through all of this, offering your positive thoughts and suggestions and digital hugs. It means so much. You guys seriously rock.

I guess it’s time to call Pam. I think I should also start recording everything. Just journal each day. “Low blood sugar today,” or “bad stomach pains.” That way, I can bring the data in to Pam or any other doctor and say, “This has been the vicious cycle lately.”

I think I need to go to Pam, tell her what I’m thinking and what’s been going on, and see what she thinks the next step should be. She should have definitely gotten Dr. Zlotoff’s consult by now. It’s time for me to check in.

You know, as soon as I pay the bill I owe them.

A Plan B

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After the shock of “Everything is normal,” passed, I brushed off the depression and started thinking. I grabbed a folder, threw the pictures of my intestines and all of the remaining paperwork from the procedure into it, and labeled it

Medical History
Mystery Autoimmune Disease

I grabbed a Post-it note sheet — love those things! — and listed all of the doctors I’ve seen in the last three years:

  • Dr. F, my pediatrician when all of this started
  • Dr. M1, the orthopedic surgeon and hand specialist
  • Dr. L, the physical rehab specialist and nerve test conductor
  • Dr. R, the chiropractor
  • Dr. D, the general practitioner (my first grownup doctor)
  • Dr. G1, the neurologist
  • Dr. M2, the rheumatologist
  • Pam, my PA-C
  • Dr. G2, another rheumatologist
  • Dr. Z, my gastroenterologist

Ten doctors, in three years.

I decided that I would call each of these doctors and have them send me a copy of my medical records. I don’t have everything, even though I should. After I get the biopsy results on Tuesday — and I’m sure they will show absolutely nothing wrong, because this is the story of my life — I’m going to see Pam about getting into Yale to see a specialist, maybe an endocrinologist or another rheumatologist. Then, I’m going to copy all of my records, go to whichever new specialist the dice roll gives me, and I’m going to lay it all out for him or her.

Maybe she or he will put all of the puzzle pieces together and notice something no one else noticed or thought significant, Mystery Diagnosis style.

Having this new plan gives me control again. I don’t feel helpless as long as there is a Plan B.

Now, in the event that my biopsy does show something, well, I guess we’ll see.

So far, so good, oh well

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I’ve been kind of avoiding my blog lately, to be honest. I haven’t really had a lot to say. So much for blogging every day, huh?

Tonight I graduated to 200mg of Seroquel. I accidentally skipped my 150mg dose the night before last, so I’m not sure if that’s going to affect me in any way. I couldn’t call Pam to ask, and totally forgot to ask my mom, so we’ll see. I feel fine, if not a little tired and cranky at times, but that could just be normal and have nothing to do with the meds.

So far, I think the Seroquel is working. I mean, I don’t feel any different — at least, I don’t think so. But I guess that’s a good thing, since most medications affect me in weird ways. I was on Zoloft for about a year when I was a teenager, and it eventually made me completely and coldly apathetic; I wouldn’t have given a shit if my whole family died. That’s a scary feeling, let me tell you. I had to wean myself off of it — because if you just stop taking it, it could make you suicidal (go antidepressants!) — and didn’t want to try anything else. Then, not too long ago, I went on Cymbalta because my rheumatologist thought it might help with the pain and the depression. Cymbalta made me more energized than the Energizer Bunny; I was like the Energizer Bunny on CRACK. I didn’t sleep at all. After about four days, I stopped taking it.

Pam says that people with bipolar disorder don’t respond well to antidepressants; they either don’t respond at all or have weird side effects — like what I experienced. So I guess my PA-C is pretty sure I’m bipolar, which is good; I really like that she listens to me and takes into account what I think. I told my mom years ago that I thought I was bipolar, and she brushed it off. (She still doesn’t think I am, whereas most of the other people I interact with do agree that I could be bipolar. I think she’s just seen way too many extreme cases at work; she’s a psych tech in the behavioral disorder section of a hospital.)

Seroquel does do one thing, though: it makes me super tired once I take it. I have to get a good night of sleep, or else I’ll be out of it for hours the next day. Pam warned me about this, and I’m stoked to for once respond to medication the way I’m supposed to. (Remember Neurontin? After about a week of being on that stuff for my pain, I ended up high as a kite on night in Mike’s basement, not knowing where I was or who I was with. Yeah. I so want to take that again. NOT.)

I see Pam again on Friday. I hope that she was able to get some ideas out of my rheumatologist’s notes. I try really hard not to think about the fact that it might take years more to get a diagnosis. I try not to worry that between now and then, whatever it is could get even worse — devastatingly worse. So far, I’ve been lucky. I mean, it sucks to be in mind-numbing pain when the pain hits, but so far it hasn’t done any damage — that I can see, anyway. I am pretty much stuck until I do find out what it is, though.

Anyway. How are you doing?

PS: I need some feedback on a couple of sections from Secondhand Mom, so I’m thinking about posting an excerpt here. Would you be down?

PSS: Freaking Bookworm is back up!

Squirt vs Apollo

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Pam wasn’t kidding when she said the Seroquel would make me drowsy. I took it at about 12 or 1am, and by 2am I could barely hold my own head up. Today I’ve been pretty lethargic; all I want to do is, well, nothing. She said it would pass after a few days. I’m pretty sure she said it would phase out once I hit the 150mg dosage, which is about five days from now.

I just downed a cup of coffee, though, and I feel a bit more lively now.

Speaking of lively, today’s been an interesting day. Remember how I told you about my living situation? You know: my parents, great-grandmother, and Apollo the cat on the first floor, my great-aunt on the second floor with her cat Charlie, and my sister, grandparents, Squirt the cat, and I on the third floor. My grandparents and parents ended up making the switch, so now Mom, Dad, Lauren, and I live on the third floor, and Noni, Popi, and Biz Noni live on the first.

We decided that we would eventually move Apollo up here, too, but knew that it would be rough because Squirt? Is Napoleon in disguise. She weighs maybe eight pounds soaking wet, but she’s got tons of attitude to make up for how teeny she is. Apollo, on the other hand, weighs probably two or three times as much as she does, but he is a big baby. Squirt originally belonged to my ex-boyfriend, and his family didn’t treat their cats very well. I found Apollo outside a few years after my ex gave me Squirt. He was a teeny, orphaned kitten, and you could tell that he had been dumped by his original owners.

So we knew that Squirt was pretty much going to push Apollo around. We decided to move him upstairs last night, and it’s been a Mexican standoff since. Right now, we have a door with a glass window standing between them, with him prowling most of her territory. Last night and most of today, she had him cowering in a corner. Even though she is my baby, I felt really bad for him, so I moved his litter and food into the corner with him and as soon as she left the living/dining rooms, we closed the door behind her. Now he is all badass, like, “What, bitch? You can’t touch me now!” Currently he is exploring under my desk and she is sulking in the window in the pantry, I think.

Squirt has always been my buddy, but I couldn’t stand seeing Apollo hiding under a table, not coming out to eat or drink; if he so much as raised his head, she would start to hiss at him, and if he tried to come out, she would charge. She is scary for such a tiny little thing; she has kicked my ass on more than one occasion.

But I love them both. I hope they at least learn to ignore each other.

I need your advice! Have you ever introduced a new pet to your current pets? How did you do it? Did they become friends? Is there hope? Please leave a comment with your pet advice!