A Blip On The Radar

A routine annual Pap smear turned into a colposcopy, which turned into a laser conization, which taken together has become one of the most uncertain times of my chronic illness life.

When I first got sick, I was in a state of limbo. Doctors who were trying to figure out what was wrong with me stated “it might be nothing or you could be dying.”  It is heavy to live with the unknown.  And somehow, I thought I had experienced enough health stuff not to be surprised any more.  But my body had other plans.

And then you start hearing words and phrases that make you shudder, that truly are the stuff of nightmares:

In my head, I have always thought that the decision would be easy.  That if it was my life or having a baby, I would clearly choose my life.  But when the prospect becomes reality, it is not as easy as the times I have played the scenario out in my mind.  It is not as simple as it seems.

And thankfully, at this moment in time, it was not necessary to have to make that decision.  But it forced my fiancée and I to have some difficult conversations, in which I suggested that he get out while he can because things might get harder before they get easier.  For us, “in sickness and in health” is not a hypothetical.  It is as real as it gets.

When you’re growing up, everyone makes such a big deal about getting your period and becoming a woman and how wonderful womanhood is.  But they fail to mention - or we purposely fail to understand - that, that which makes us women, can also kill us.

It is strange because my illnesses are in a very stable place right now, and yet, my body has chosen to remind me that it is fragile, and that having a crappy immune system means being at greater risk for a lot of things, even when I feel reasonably well.  I’ve become accustomed, dare I say good, at dealing with the lupus and RA stuff.  But unrelated bodily stuff, not so much, especially things like this.  These are the things that scare me the most.  Things hiding under the surface that cannot be seen or heard until it is too late.  But I got lucky.  So I get twice as much fun per year for the next two years pending normal Paps each time.

This is the first time in a decade (since I got sick) where I’ve felt like “let’s get this over with and let me get back to my life.”  Since I got the news, it seems like it has overshadowed everything.  Like the uncertainty of not knowing this has been worse than the uncertainty that I first felt when I became chronically ill and was forced into the realization that chronic means never going away.

The reality that there’s something that could be worse than the day in and day out of lupus and RA is too much.  I can deal with the physical aspects.  Between my oral surgery in November of 2016, my foot surgery in November of 2017, and this, physically, this has been the easiest.  It’s the emotional aspect that is difficult.

Sometimes, chronic illness is a minefield of suck.  But hopefully by this time next year, I will be a married woman and this whole situation will be merely a blip on the radar.

I’m Engaged!!!

Valentine’s Day 2018 will be a Valentine’s Day that I will always remember.

For those of you who have been reading this blog for awhile, you know that I’ve had a fair amount of relationship blunders over the past decade.

But for nearly two years, I’ve been in a relationship, and I haven’t really blogged about it.  At some point, I pledged to myself that the relationship would be the one that I didn’t really talk about publicly.  Maybe subconsciously, I knew this time was different.

So I haven’t written about the ups or the downs, or anything, really.

But on Valentine’s Day, we got engaged!!!

It was a total surprise.  I had been really upset over the holidays because I thought it was going to happen and it didn’t.  So I put it out of my mind.  I figured that if it was going to happen, it would when it was meant to.

So on February 14, 2018, my fiancée made me dinner.  Then he gave me a giant pink gift bag full of pink tissue paper.  I kept pulling tissue paper out of the bag, and when I got to the bottom of it, there was nothing in it.  I looked at him and he got down on one knee.

The rest is kind of a blur.  I think I may have blacked out a bit.  The only words that came out of my mouth were, “Are you serious?”  While I had been waiting for this for a long time, when it actually happened, it was kind of surreal. I know that we hugged for a long time, and I said “yes” when I realized I hadn’t said it yet.

The proposal was perfect.  It was just us, at home.  And he even met with my mom beforehand, which was really sweet and something that he knew was really important to me.

Right now, I’m enjoying soaking us this exciting time and plotting and planning so that we can have the perfect wedding for us.

We’re getting married May 5, 2019.

This time next year, I’ll be married!

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.

Welcome Home

That Time They Went For The Jugular (Literally)

It has been awhile, like four months, which is way too long.  I’ve been computer-less, and still am, but there is so much to share.  Some of the more fun and exciting stuff will be saved for other posts.

For now, I’m taking you back to November.  To my foot surgery.  To my first surgery since being diagnosed with lupus and RA (not including the gum graft I had in November of 2016).  I feel grateful that I went almost a decade of living with these diseases to have surgery.  But I feel like it stole a part of me.  I stepped over an invisible line, and now I can’t go back.

The surgery itself wasn’t horrible.  The day after was.  I’ve never been in that much pain.  It felt like someone was repeatedly lighting my foot on fire. But the worst part of it occurred before the surgery actually happened.

I have “bad” veins.  That has always been the case, but it has become more and more apparent the longer I live with multiple chronic illnesses.  The nurse that prepped me for my surgery tried three times, to no avail.  She went and got the anesthesiologist.  He came in and asked if they had ever gone in my jugular for an IV before.  I stated that no one had ever done that before and I didn’t even realize that was a thing.

The anesthesiologist asked if he could try and get the IV by going in my jugular.  I didn’t really have a choice.  But if he wouldn’t have gotten it, I would have gotten off that table and run away, ass flapping in the wind.  And I never would have looked back.

But because I let him, I keeping looking back and back some more.  At this point, I would say that I have medical PTSD.  Part of the reason is that after going through foot surgery, having four screws put in my foot that will remain their permanently, and several visible scars, what remains is the IV in the jugular.  That’s what sticks out to me from the whole experience.  Not only sticks out, but troubles me deeply.  It was traumatic.  My stress level was through the roof. They did numb my neck first, but that was more needle sticks.  I heard the anesthesiologist warn my mom before they let her come in the room that they had inserted the IV in my neck, and not to be alarmed.

When my doctor got to the surgery center and came into the room, he said I was only the second ever patient of his to require an IV in the jugular.  Lucky me!  But the reality is, to have someone that has “bad” veins under normal circumstances not be able to eat or drink for 12 hours, what do you expect to happen?

This chronic illness journey is a crazy one, and while I am grateful to have gone nearly a decade without a major surgery, I hope I don’t have to have another for a long time.  I will need to have my left foot done eventually, but since I am not currently in pain, I see no reason to rush it.  My right foot was another story.  I was in pain all the time.  Now, I still have pain from the surgery, but no pain in the areas the surgery was supposed to help and that we’re in significant pain before the surgery.  So I guess that’s the win.  And I guess that as for the emotional stuff, time heals all wounds, even wounds in the jugular.

Awesome picture, pre-op but post IV insertion, courtesy of my doctor. 

Before

Notice how my big toe is bowed from the bunion and my nasty hammer toes.

After

Note the screws 

This was many weeks after the surgery, still in rough shape but no longer needed it wrapped.

Locked and loaded