A Decade Later: Reflections On A Chronic Life

On this day, 10 years ago, I started this blog.  I was just finishing my first year of graduate school, and after eight months of crazy symptoms and years of strange illnesses here and there, I was able to put a name to what was plaguing me.  And because of lupus and RA, this blog was born.

I’ve debated whether or to link to posts here, but it’s so hard to pick from them.  In the beginning, this blog was kind of unfocused.  I talked about my illnesses, but I also talked about shopping, cooking, books, and other more frivolous things.  But the more I blogged, the more focused it became.  And it has been lifeline for me to the outside world, to those who know what I’m going through (and even some who don’t).  

All I know, is that in the last 10 years, you all have seen me through the good and the bad, the highs and the lows.  There have been several serious relationships that have crashed and burned.  And then there’s the one.  You’ve seen me through the losses, of which there have been many: the loss of my cousin, my uncle, my grandpa, my dad, and my grandma.  You’ve seen me through blood work, prescriptions, injections, colonoscopies, colposcopies, oral surgery, foot surgery, and more.  You’ve celebrated my triumphs and mourned my tragedies alongside me.  And quite honestly, that’s more than I ever could have asked for and more than I deserve.  

But I made it.  I’m still standing.  After all these years.  

I can’t believe that then, I was a young twentysomething graduate student just finding my way in the world, and now I’m a thirty something; a homeowner, engaged, and working full-time.  Back then, my life and my future felt so uncertain.  And maybe now life is just as uncertain as it has always been, maybe some of the time I just handle it better.  Maybe I am stronger in the broken places.      

I worried when I first started writing that literally only my mom would read it (shout out: Hi Mom!).  But it turns out, she wasn’t the only one.  And I am so grateful for the connections I’ve made through this blog, and for the love and support over the years.  I am grateful to my readers, who have read, commented, and kept reading, and have followed my journey along the way. 

I guess I will leave you with the links to my “year in review” posts, as those probably give the best summary if you want to look back at my blog through the the years:

• 2008

• 2009

• 2010

• 2011

• 2012

• 2013

• 2014

• 2015

• 2016

• 2017

You’ll just have to stick around to see how the rest of 2018 goes…

With immense gratitude,

Doctors Aren’t Always Right But Some Doctors Just Want Their Money (10 Months Later)

Last June, I went to the worst rheumatologist appointment ever (Read: The Storm After Years Of Calm).  And I thought, now that I have a new rheumatologist that I like, that I had put it behind me.  But to my surprise and chagrin, a few weeks ago, I received an explanation of benefits from my insurance company stating that I owe over $300 for labs that my insurance plan isn’t paying for.

First of all, why am I getting billed for this now?  It is April of 2018 and this appointment occurred in June of 2017.  Second of all, no, just no.

I will not be taken advantage of this way, especially since after the tests were run, I found out what they were and they were totally unnecessary.  Tests were run for multiple myeloma (makes no sense), and for a doctor that didn’t seem to believe I have lupus and RA, she ran no confirmatory tests for the illnesses that I ACTUALLY HAVE (Read: I Do Have Lupus And RA After All...).

So I contacted the person who is our designated contact at the insurance company.  She proceeded to attempt to school me on what a deductible is and that mine hadn’t been met yet, hence the charges.  I calmly explained that I know what a deductible is and all of that, but that’s not what I was questioning.  I asked if I could appeal, and was told that I had 60 days from the date of service to appeal.  I asked how it was fair that I could be billed for services 10 months later but only had 60 days to appeal?  We continued to go back and forth, with her being incredibly dismissive and disrespectful to me.  I finally asked to be contacted by a supervisor.  I’m still waiting.

(Also note that since this appointment took place last year, it would have counted toward that deductible, which I met.).

I also contacted the person that administers our insurance, and was told that my best bet was to contact the provider.  I explained that in order to spare myself further mental anguish, that was definitely not an option.  In fact, I have attempted, on at least six occasions, to contact the medical group administration, without success.

I have no intention of engaging with this provider ever again.  And I have no intention of paying any bill I receive now for lab work or anything else associated with that appointment.  It’s nearly a year later at this point.  And I was trying to move on from that appointment, which set me back a lot, both physically and emotionally.

It is unbelievable to me that doctors can provide subpar care and nothing can be done about it, unless it gets to the level where you have a lawsuit.  It seems that, that is the only way that patients can get any sort of vindication.  I can’t reason with a terrible provider.  I can’t get a direct line to anyone at the office above the provider.  I can’t get any assistance from my insurance company.  So what am I supposed to do?

I would love to work for an insurance company and advocate for patients in my position.  I would love to be able to contact a provider and say “you have to write off this bill because the patient was not treated well, and neither them nor we are going to pay for it.”

Clearly, there is a reason why I have not and will never see this provider again.  It is not like I have gone back multiple times to see her.  And I pay all my bills.  As long as the services are rendered properly, I have no problem paying.  But when services are rendered far below where they should be, I am going to fight that, especially when I had assumed that everything was done and paid for.  It’s a bit strange that 10 months later they are coming after me for money, but this provider has never contacted me to see if I was coming back to see her again or not.  I guess the loathing was mutual.

It’s also interesting because my insurance is claiming that they’re not paying due to the diagnostic codes.  Which brings me back to the beginning.  Of course, because the tests don’t make sense for the diagnoses I have and am being (successfully) treated for.  So you see, I am being sent in circles.  Once I knew what tests were run - after they were done and I saw the results - I knew they were totally unnecessary.  But this doctor was so convinced that she was right and I was wrong that she went on a very pointless (and expensive) fishing expedition.

And this is where the medical profession and the insurance industry get it wrong.  That this doctor’s experience in medical school trumps my near decade as a patient living with lupus and RA is absolutely ridiculous.  And that I should be the one to have to pay for the fragility of her ego is even more ridiculous.  She made an error.  It was a grievous one, but thankfully I’ve had a (correct) diagnosis for long enough to know that she was wrong and that I wouldn’t put up with that kind of treatment from any physician.  So I cut my losses, now she needs to cut hers.

I Bought A House!

In my last post, I shared about my foot surgery and said that there were several other things that had happened, which I had not had a chance to blog about yet.  So the first is...

I BOUGHT A HOUSE!

Back in December.

The whole mortgage process was super stressful, and having to think so far into the future about what we might want and need, was a lot to think about.

When I went to college, I felt fully equipped for the experience.  But buying a house?  I felt like I had no idea what I was doing.  And three months after moving in, I still have no idea.  But things are finally settling down in terms of getting settled.  And for the most part, I am enjoying it.

I would be lying if I said that lupus and RA did not figure into the process.  They definitely did.  We opted for a ranch.  While not easy to find, I did not want to buy a house that at some point in the future, or even just on bad days, I would not be able to navigate.  I did not want, from day one, to relegate myself to the couch, if I am unable to do stairs.

RANCH = NO STAIRS!!!

We also bought the house mid-December and did not officially move in until mid-January.  The last time I moved, I flared massively and had to miss three days of work.  I did not want that to happen again, so we did a slow move.  And it worked!  I did not flare this time!

As far as cleaning, well, 1600 square feet is a lot bigger than the apartment that I moved out of, so it is definitely a big task.  I try not to do it all at once.  At some point in the future, I might consider hiring someone to clean, but for now, we do what we can when we can and try and keep things as neat and tidy as possible.  For me, this is important because I am definitely influenced by my environment.  If my living space is disordered, it makes everything feel that way.  Which leads to anxiety and stress, and if the stress is left unchecked, flares.

The other thing is, I had to set some firm boundaries with my mortgage lender, because of course, everything decided to explode the day before my foot surgery, and I just could not deal.  I had to have my boyfriend step in because it was just too much.  And the calls, texts, and emails any time, day or night, were a lot.  Thankfully, our realtor was very helpful.  And in the end, we got the house of our dreams, so I guess that is what matters, right?

Now that we are on the other side of the whole experience, I do think it was worth it.  I really hope that I never have to move again, though.  The whole process is a lot and there is so much that comes into play that you do not expect or think about.  We got to the point where I was ready to throw in the towel.  In fact, the night we first saw the house, I had a horrible migraine and was trying my best not to pass out or throw up.  So I guess that is how you know you have found one!  If you step foot inside the house with a horrible migraine and manage to keep it together.

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