Doctor issues – can you relate?

The following is some recent correspondence between me and my Primary Care Provider. (It pretty much explains why I haven’t bothered having a PCP for a while, but I digress.) The second note from me to him started getting long, and I finally realized I didn’t want to send most of it but wanted to post it here.

Below, you’ll find my first recent note to him, the note I received back (pay attention to the dates), and the note I sent back to him plus the part I didn’t send. As always, comments welcome!

From: Lex
To: PCP
Subject: Severe eye issues – please help
Sent: 10/6/2016 5:00:28 PM GMT

Hi [PCP] – I have now been diagnosed with ocular rosacea as well as dry eye, blepharitis, and eye allergy issues. My eyes have gotten much more irritated lately, but I cannot reach my ophthalmologist about treatment options for the ocular rosacea. My eyes are in significant pain and I have had to cancel weekend travel plans because I am too uncomfortable to do much of anything that requires being able to see.

I am currently on Restasis 4x/day and Prolensa once a day, but I would really like to start on low-dose antibiotics, which have been reported to be helpful in every article I’ve read about ocular rosacea. Would you be willing to prescribe some for me, if they won’t interact with my other meds? This article gives some more info: http://emedicine.medscape.com/article/1197341-treatment

Also, the Mayo Clinic website says: “Your doctor may prescribe temporary use of oral antibiotics, such as tetracycline, doxycycline, erythromycin and minocycline. For severe disease, you may need to take an antibiotic for a longer time.”

Please call me about this at [my phone number] and leave a detailed message if I do not answer. If you are willing to prescribe antibiotics, they would need to be sent to [pharmacy I use].

Hope to hear from you soon. Again, please call instead of sending a message back, since I cannot look at the computer screen much.

Thanks,
Lex

——-

From: PCP
Sent: Sun 10/9/2016 5:27:10 PM GMT
To: Lex
Subject: RE: Severe eye issues – please help

so who diagnosed ocular rosacea- and if it was the eye doc or dermatologist why wouldnt they watnt to prescribe the antbiotics accordingly, that said we alos need to recognized that you have GI issues and long term antibiotics may worsen this
we should probably meet to discuss more
i can call you next week, its been extremely busy

——-

Re: RE: Severe eye issues – please help – Message
From: Lex
To: PCP
Sent: Sun 10/9/2016 6:38:51 PM GMT
Sorry, this was a very urgent problem and after spending all week trying to reach doctors to get the prescription that is considered the standard treatment for ocular rosacea (which was diagnosed by [Dr. Reputable Fancypants]), I finally saw an ophthalmologist on Friday ([Dr. Nearby]) who not only was willing to give me the prescription but was shocked that no one else would. He confirmed the ocular rosacea diagnosis and ran some tests. He also gave me punctal plugs for dry eye.

The GI issues are a concern, of course, but right now I am on a low dose of doxycycline – 50 mg 2x/day. Honestly, if my eyes remain as irritated as they have been, it has far more of an impact on my life than my stomach issues do. I am already so severely limited in what I can do by the fibromyalgia that I cannot keep going without being able to use my eyes. I can’t use the computer for more than a few minutes a day, read a book or magazine, watch TV, etc. I have been wearing 2 pairs of sunglasses INDOORS for months now. I have been unable to do much other than listen to audiobooks, talk on the phone, and anything else that doesn’t require being able to see. Things got ridiculous and I am glad to have gotten the treatment I needed. The punctal plugs already help somewhat, and the antibiotics will take a while to kick in.

HERE’S THE PART I DIDN’T SEND:

Since this problem started (in April or May?), I have seen no fewer than 4 ophthalmologists. The first and second did not diagnose the problem properly and gave me only steroid eye drops and allergy eye drops as treatment – both of which worsened the problem. I was also given Restasis, but in cases of ocular rosacea, that doesn’t help much because the oil glands are blocked so the tears produced by the eye just evaporate. The third ophthalmologist (aka Dr. Reputable Fancypants) decided he wanted to try something completely unconventional that no one understood why he would want to try (friends, other doctors, etc.), and would not give me the standard treatment because he was too interested in using me as an experiment.

I tried to call or send messages to every single doctor I could think of about this, and finally went to Urgent Care on Thursday, where they would not do anything for the problem. Thank goodness I managed to get an appointment with [Dr. Nearby] for Friday. It should not take this kind of effort for a patient to get the standard treatment for a diagnosis, especially when that treatment is a low dose of antibiotics as opposed to narcotic painkillers or something like that.

(I know you’re busy, but feel free to Google “ocular rosacea” if you have time and you will see what I mean.)

I am sorry to unload on you like this, but quite honestly, I am furious – not at you, but at this whole dysfunctional medical system where so many doctors would prefer to keep a patient in pain rather than give them the medication that they obviously need. This is not my first rodeo – or even my second – and I am tired of having to do my own research in order to find out what I need, check for drug interactions myself, and then get treated like someone who doesn’t know what she’s talking about (or worse, someone who can’t be helped).


And that’s where I stopped. There is a lot more to this situation than what I’ve written here, but this is what you’ll get for now because – surprise! – my eyes hurt.

Musical interlude

I thought I’d post the actual song I quoted yesterday – KT Tunstall’s “Hold On” – because it’s just such a cool song. Yes, I’m posting a You Tube video, but only because I don’t know how I could post just the audio (I’m not big on most music videos, unless they’re live acoustic or really creative or something). This “video” is really just the album cover with the song playing.

Also, I feel that I must add another song lyric of gratitude here:

Life is too short, so love the one you got
‘Cause you might get run over or you might get shot

-Sublime

I know, it’s kind of a silly one, but it’s true. And on that note, I’m going to go eat some breakfast.

Oh, but first, in case you are wondering why I post song lyrics so often: I love music. It’s always been one of the things that helps me get by. I used to make music – I’ve played piano, trumpet, and guitar, and I’ve done a lot of singing. Now I mostly listen (and sing, but not in public), but music is something that can really inspire me and I hope that maybe this adds something to your day, too.

Please always feel free to share your musical inspiration in the comments! I’m always excited to get to hear music that’s new to me, or listen to old favorites.

The “big news”

I can’t believe that it’s been a month since I last posted. In my previous post, I mentioned that I have big news. Without further ado, here it is:

I have been approved for Social Security Disability.

This means that I will finally actually have some money! At first, I was completely elated by this news. I thought that having an income of some sort would make us more comfortable. This is despite the fact that I knew my payments would amount to less than half of what I made during my first job after college. (I should add that during that time, I was woefully underpaid and living in low-income housing provided by a luxury apartment building so they could get a tax break. It was nice, but it was only available because I was being paid so little!)

I will also be receiving a rather large check amounting to the payments for every month I have been unable to work since January 2012.

I am still very excited about having some money (besides my husband’s). However, I have since found out that Social Security Disability income is taxable. This means that I will lose about a third of it to the government. This makes very little sense to me due to the fact that this is money that was taken out of my paycheck as taxes to begin with! It’s kind of like taxing taxes. (In fact, isn’t that exactly what it is?!)

Well, anything is better than nothing, and this is a heck of a lot better than nothing. I just wish I had known ahead of time that the amount of money I would get would barely be enough to help with our monthly bills, instead of providing a little extra cushion of discretionary income.

I know I really should not complain about this. There are so many people who have to get by on so much less. Also, I am very relieved to be done with the process of applying, getting denied, appealing, having a hearing, etc. That was extremely stressful, and now I know the process was not for nothing. I am also very thankful to my lawyer, whose help was immeasurable.

I have been trying to figure out a way to bring in a little more income while staying within the rules for Social Security and also while continuing to try to maintain my health. I am toying with the idea of blogging for money, although I would always make sure that any advertising would not interfere with this blog’s mission or aesthetics. Any thoughts about this? I would love to hear from you.