Aug 25: health updates, problems with renter

-Appointment with rheumatologist: completely unproductive.  She said, repeatedly, that my not responding to the prednisone was something she'd never seen before and was 'very unusual'.  Funny, it never gets any better hearing that about my body.  After establishing that I didn't have any symptoms of rheumatoid arthritis or lupus, with the exception of the fatigue being multi-factorial, she clearly had no idea what to do.  Her only thought was putting me on methotrexate, the most common 'starter drug' for autoimmune disorders, which is a mild form of chemo.  I told her that if she wasn't sure I wasn't poisoning my body.  She wanted to talk to the ophthalmologist after my being seen on Friday.  She also wanted me to be seen by a specialist in the city, whose first appointment is mid-January.

-Saw ophthalmologist Friday.  My eye is totally fine, although the glands are still swollen, left more than right.  Understandably, she doesn't feel comfortable treating me for anything else.  I'm now trying to get a new patient appointment with another rheumatologist, but the first available time is November 12.  I have requested that the opth doctor call the rheum doctor, explain that I have refractory Sjogren's and ask for me to be seen sooner.  Waiting to hear if that is done on Monday.  In the meantime, the opth doc did the only thing she could do for me: injected steroids into the glands again.  The hope is that by doing so I'll be able to taper down the prednisone.  We'll see if it works this time.

-CPAP arrived on Tuesday--YEAH!!  Again, I could tell the difference after using just one night, which is just thrilling.  While I can't say that I feel any less tired, or have more energy or can function at any higher level physically, what I can say is that my mind is dramatically clearer, and that's huge.  Apparently it can take two to four weeks to receive the full benefits of getting truly restful sleep, so we'll see how things progress.  I'm not holding out hope that this is going to make everything OK, because there just simply is nothing that will change the symptoms of having a tiny valve opening trying to support an adult body, and the resulting surgical damage to heart, lungs and chest.  But being more clearheaded, that's a huge improvement.  Honestly, I was getting concerned while driving sometimes I was so out of it, including before the prednisone. 

-During the repairs to the bathroom it was discovered by the plumber that all the downstairs pipes were disintegrating, he advised me to replace them within six months, the sooner the better.  It took until now for me to save the money up for it, along with everything else that's come up of late.  He had a sudden opening on Friday.  I had told my tenant about the issue before, I then texted her that the next day, the 23rd, the plumber was coming and that there was to be 'no toilet, sink or water use' between 9 am to 3 pm.  Since I've already stated 'problem with renter', you know what's coming.  Just after the plumber removed a particularly bad segment, which fell apart in his hands, the renter flushed the toilet and used the sink, causing all the excrement that was immediately below the area to be splattered all over him, his assistant and my basement.  On my irate call to the tenant, who was very perturbed that I was furious, she said she hadn't forgotten, but since the water was on she figured it was OK to use everything.  It wasn't, of course, because the problem wasn't water coming into the house but going out of it.  The plumber, understandably, added $100 onto his charges for the inconvenience and additional time and clean-up that was necessary.

My decision is to tell her that she owes me the $100 in compensation, and that if she doesn't pay that I will be giving her notice to vacate the apartment.  I've written about several times where her behavior has been unacceptable, but I told myself it was worth it because of the regular checks that never bounce from the County, her being fairly quiet and not being a convicted convict.  (See the postings from later summer/early fall of 2010 if you don't remember that reference.)  But her continued passive-aggressive behavior, constantly calling either me or my handyman about any tiny perceived problem (which is usually groundless) and her frequent whining and unpredictability are now outweighing the positives.  While I hate to lose the rental money at the point when I'm moving towards disability and will need that income even more, and the expense of cleaning and re-painting before another tenant, the stress of dealing with her is really getting to me.  She clearly has psychiatric issues, and I just don't need this stress in my life.  It's one thing if you have a renter somewhere else, it's another to have one that lives in the same house.  When it works, it's wonderful, but when it doesn't there is no escaping. 

So that's the update.  Thanks for checking in,   Laurie

Aug 18: It's always darkest just before.....damnit!

Sleep study:  oxygen not enough, was still dropping down into the 81-82% range with nasal oxygen on, so the tech came in and did the CPAP with it going through my nose because of my mouth being so dry with the Sjogren's.  I have been telling myself over and over since the positive results: 'Body, whatever is needed you will welcome and adjust to right away, because it's going to make you feel better.  CPAP will be wonderful for you.....'  I'm a big believer in mind over matter.

It feels weird.  I've heard it described by people as feeling like they were drowning; I think it's because you have to exhale against the force of the air coming in, and that requires more effort than your normal breathing, since your exhales are more passive than your inhales, and CPAP reverses that.  (CPAP = Continuous Positive Air Pressure)  The pulmonologist said the next day that I was struggling with it for the first hour or so, and then 'slept like a baby'.  The tech told me that I had three REM sleep cycles with my oxygen in the 90s.  Yeah!! 

While tired, not sleeping in my own bed and being woken up frequently, I was amazed that I felt much more alert the next day.  Could really tell the difference, even with only about three hours using the CPAP.  Couldn't believe that short a time could make such a noticeable improvement.  What will it be like with a full night?  And then two? And a week?  How exciting! Improvement in my physical health with no heart surgery involved!!

So now waiting for the equipment company.  Doctor told me it could be this weekend, but it wasn't.  It's so frustrating, because here's this carrot being held out with the promise of making me feel better and every day is one day more of feeling like absolute shit.  Making it worse is the tech admitted to me that she had missed  my oxygen levels going so low last time and that she should have put me on CPAP then, as protocol says to do that even during the first study if the levels go below 88% (reminder: mine were down to 77%), which means I could have been feeling better for the last SEVEN WEEKS.  So yes, chomping at the bit and pretty pissed that there has been this delay. Hoping maybe tomorrow? Tuesday?

In case it hasn't come across, being on the prednisone has totally screwed me up.  For the record: the prednisone itself is not the cause of the sleep problems.  The OSA/hypopnea (Obstructive Sleep Apnea) is something that has been happening, although I don't understand for how long and just how much is tied to my heart and lung issues.  The prednisone, however, is further overwhelming my body and mind's ability to cope with life.  I function on a level that has a very narrow ledge before I get into trouble, and this medicine, while necessary, has pushed me off the ledge.  The longer I'm on it the worse I feel, even with lower doses.  I feel truly horrible: exhausted, anxious, edgy, unable to focus, out of it, bloated, not myself, slow, tearing up and getting emotional at the drop of a hat.  I can't do anything but work, feel like I'm barely functioning, making a lot of mistakes.  I'm not me.  Having an almost constant ache around the left eye and my face, sometimes the left side of my face & head, is not helping.  The left eye started tearing today, then the lid and around it swelled up again, so I had to increase the dose again, which means today up to 15 mg again, and should probably take more since it's still aching as I type this.  I'm seeing the rheumatologist on Tuesday and will be begging for something else.

In the meantime I need some f#%king sleep, damnit!

Hoping that my next post will be after a night or two of gloriously oxygenated rest,   Laurie

Aug 15: quick update

Have second sleep study tonight.  Hoping that all that will be needed is just wearing oxygen at night.  Should get results next week, last time it was Tuesday.

The day after the last post I woke with not only the facial pain, but the feeling of a foreign body in my left eye, so had to increase the prednisone again.  Tapered down for today, only took 5 mg and so far OK today, but will take 10 mg tomorrow.  Being on the 5 mg doesn't affect my sleep.  I'm concerned it's taking so long to resolve the scleritis, and also how incredibly fatigued this exacerbation is making me--absolutely exhausted.

Today a drug rep came in who said she had called on me at my first PA job in Ridley Park, which I left when the company closed in 2000.  I didn't remember her at all.  She kept on saying 'You look so different than you did....'  I was so tired that my only comment was 'I've had some health issues over the years.'  Honestly, after I recovered from the surgeries I really haven't looked that different, but having an autoimmune disorder flare and having been on prednisone for over five weeks has left me with a puffy face and huge bags under my eyes, along with the lacrimal gland swelling around both eyes which is a sign of the Sjogren's.  But hey, thanks for reminding me. 

Stay tuned,  Laurie

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