Aug 10: May I have some more, please?

So, left you hanging last time.....

Later in the evening of July 3, after finding out the surprising results of the sleep study, my left eye area started hurting a bit.  The next morning it was worse, figured allergies were aggravating my sinuses.  Left eye was bloodshot, especially in the outer part of the white area.  Put in eye drops, which I've taken to using more and more, just the moisturizing ones that my ophthalmologist had suggested after noting that my eyes seemed to be getting drier, attributing it to age and my peri-menopausal state.  Packed the car for the trip down to DC, set the cat's feeders and off I went.

As I drove on the turnpike my left eye seemed to be getting worse, and it became more and more uncomfortable to move it, such as when changing lanes, etc.  Wasn't really concerned until I pulled into a Wendy's to grab a coffee and took off my sunglasses. At first I thought my left eye was full of tears, it looked like there was a big drop balancing on my lower lashes.  I reached up to dab it off, and then realized it was my conjunctiva tissue, so swollen it was quite literally coming out over the lower lid, and of course fairly bloody.  Deep breaths, deep breaths.  Checked my vision, not affected.  Deep breaths.  Definitely painful to touch around the entire eye and socket.  I called Susan and told her I was going back home and then to the hospital. 

So, spent July 4th evening in Lankenau's fast track.  The very nice PA informed me it was a subconjunctival hemorrhage.  I, also very nicely, told her it absolutely wasn't.  Honestly, I didn't know what it was, but it wasn't that.  By definition, I pointed out to her, a subconjunctival hemorrhage was painless.  She deferred to her attending, who took his time coming back to check on me.  He informed me, with a good degree of condescension in his voice, that it was a subconjunctival hemorrhage.  Still battling to maintain being nice, I continued to point out that it wasn't.  Gritting his teeth after a couple rounds of this he said that, if I insisted, he would contact the on call ophthalmologist and ask them if they could see me in eye clinic the next morning.  Smiling as sweetly as I was capable of at that point I said that yes, I insisted on being seen by the eye specialist the next morning. 

Have to tell you, I was pretty proud of myself for not losing my temper. 

BTW: using Lankenau, even though it's at least a 30 minute drive, because that's where I'm going for cardiology as the best place for a complicated patient without going into the city from where I'm at.

Next morning at the ophthalmologist's the resident took about 2 seconds to confirm that it was not a subconjunctival hemorrhage.   It took a while longer before he and his attending informed me that it was a fairly severe nodular scleritis, which untreated can cause blindness, so it was very good that I ignored the reassurances of the ER physician and PA, because that would have been beyond terrible.  Nodular scleritis, the ophthalmologists informed me, also meant there was a 75% that I had an autoimmune disease.  Of course, the very nice attending quickly said, that meant there was a 25% chance that I didn't....but she has no idea whose body she's dealing with.

Eyes still dilated, in a certain amount of shock, I went down the hallway to the lab to have blood drawn for 19 (really, not exaggerating) different tests, plus the pee in a cup, although I'm still not really sure why that was necessary.  Autoimmune diseases are notoriously difficult to diagnose, so the labs covered anything that could cause inflammation, including Lyme disease and syphilis.   The benefit was that the wait was long enough my eyes weren't dilated by the time I left, going straight to my pharmacy to fill the oral prednisone that was needed to treat my eye, because it was too severe for topical treatment.

A brief review about me and prednisone: I was put on the drug repeatedly over the years for my asthma, which ended up really being mostly heart failure.  I was not self-treating, it was prescribed by pulmonologists.  You may remember that it was during such an 'asthma' attack, while on prednisone, that I got my first echo and found the mitral valve disease.  There is a list of at least 50 side effects to being on prednisone, with a high variability on what each person gets.  For me the main side effects are sleep disturbances, bloating & fluid retention, the latter aggravating my heart condition.  The longer I'm on it the crankier I get, in addition to being more prone to crying, both of which may directly relate to the sleeping problems.  And, of course, there's the fact that it sucks calcium out of my bones, which is why they are already fragile.

In short: I f*%king HATE being on prednisone.  Really.  There are few things that I really, truly hate, but this is definitely one of them.

Prednisone is given as a taper, so you start high, which this time was 40 mg, and then supposed to decrease every four days.  But they gave me 100 pills, because if the pain got worse on a lower dose then I'd need to stay on the higher dose. 

Uncharacteristically for me, I decided not to look anything up, and to choose to not deal with finding out just how bad it could be if I had an autoimmune disease.. There was nothing further to do at that point, anyway, so I went down to DC, had a great time with Susan, saw Mark, Leonor, Beth & George. 

Tuesday I was seen again at the eye clinic, and they were happy with how much better the eye looked.  While still painful around the whole socket it actually looked pretty normal.  From that appointment I went to my cardiologist, which had been scheduled months before.  My opening line to him was in regards to the sleep apnea: 'you were right and I was wrong'.  Let it never be said that I can't admit being wrong.  He was, of course, surprised at the latest development, and was able to pull up the lab tests.

Good news: I don't have syphilis.  Bad news: I have Sjogren's Syndrome and a positive ANA.

Sjogren's, in and of itself, is fairly treatable.  It's characteristics are dry eyes and dry mouth, which doesn't sound so bad.  It's why my eyes are dry, and explains why all of a sudden I had all those cavities a couple months ago, because the decrease in saliva means that your teeth get damaged more easily.  But it can affect all mucus membranes, and is frequently associated with other autoimmune disorders, such as lupus or rheumatoid arthritis. 

Surprisingly, even to me, is my calmness in taking all this in.  Maybe it's still shock.  Maybe it's because after you've heard the words 'you need a third open heart surgery' everything has a different perspective. 

That being said, things are not going super well.  When I went back on the 26th there were more signs of the Sjogren's, which is swelling of the lacrimal glands around the eye(s).  I'd noticed that in the last few months, but had dismissed it to aging.  Now they are more prominent, especially on the left.  In order to try and speed the process along they injected steroids directly into the gland, immediately next to the eye.  Honestly, it wasn't that painful.  Fortunately, I'd taken the precaution of asking my friend Holly to drive me to the appointment, since I knew they'd be dilating me again, so at least I didn't have to drive afterwards.  Of concern is that I can't get off the damn prednisone.  It's been over 5 weeks now, and I'm finally down to 5 mg/day, but it continues to ache.

To make matters worse, because of the sleep disturbances they cancelled my sleep study.  It's been rescheduled to this coming Thursday, the 15th.  I'm tapering the prednisone despite the pain because I have to have that study.  So much is riding on it, including any support the cardiologist would give me in going out on disability.  My vision is fine, and the ache is not that bad.  If it's still an issue  then I'll restart the prednisone on Friday, so would only be off for a few days. 

My appointment with a rheumatologist is the 20th.  There will probably not be any more information from that visit, because she will most likely order even more lab work and other tests.  The next appointment with ophthalmology is the 23rd.  Not sure when I'll schedule with the specialty dentist that will now be necessary. 

I sent a letter to the PA, addressed it personal & confidential.  She will certainly understand after reading it just how much she screwed up, and the resident had said he was going to contact her as well 'from an educational standpoint'.  My point to her was she broke the hallmark of being a good clinician:  she didn't listen to the patient, wasn't thorough and jumped to a conclusion which could have had a disastrous outcome if I hadn't insisted on seeing a specialist.  The attending's name wasn't on the paperwork, so I settled for telling her to inform him as well, mentioning specifically how condescending he was.  I told her I did not want to hear from her, did not want an apology, hoped she would learn from the experience and that I was not taking any further action, at this time. 

This diagnosis is, of course, yet another reason for my constant fatigue.  Honestly, I'm amazed at just how much this pudgy, middle-aged body is capable of dealing with and still managing to function, although it's getting harder and harder.

While I'm still gathering information, and haven't officially said anything at work, there is no question that I'm proceeding towards being on disability.  There are a lot of factors to consider, and quite frankly at this point I don't feel like going into all of them here.  But I am certain that I can't keep pushing and pushing and pushing myself, because there is no question in my mind that my body just can't take it anymore.  Enough is enough. 

So, stay tuned.  Thanks, as always, for checking in on my continuing saga.  Laurie