Wednesday, April 19, 2017

It’s Personal And It’s Political

I’ve been absent from my blog for a while now.  It’s not that I don’t have anything to write about.  I do.  I had surgery in November that I haven’t even talked about.  There are other things that have happened, too.

It’s personal…and…it’s political. 

Personally, I’ve experienced some growing pains in writing for some of the other health sites that I used to write for.  I feel like Johnny in “Dirty Dancing.”  But instead of telling me I can’t do my kind of dancing, someone told me that I can’t write what I want to write.

I’ve been restless.  I’ve felt unfulfilled.  I’ve pulled back on a lot of my advocacy efforts.  Partly, it’s me.  But partly it’s by virtue of the things that I’ve been involved in.  I don’t think I’ve changed that much. 

I don’t mind edits, and criticism.  That’s not the problem.  But when I am told that I can’t write what I want, and then that because I’m not gaining enough readers to merit being a consistent contributor, I can write on a freelance basis, I have to walk away. 

I draw the line at my voice being changed, at the sentiment of the message not being my own. 

Worse than boring is being status quo, and is not standing up for what you believe in.  It means saying no even when that might mean turning down opportunities that you once would have taken without question.  It means remembering why I’m here, where I started and where I’m at now.  And reminding myself that it’s not a popularity contest.    

Because when it becomes more about the voice of the sponsor or the image of the company and less about the patient voice, that is a problem. 

In the end, I don’t represent a company or website, I represent myself.  And if I’m not representing myself and my fellow patients, then what the heck am I doing?

I haven’t worked as hard as I have to be a patient advocate in order to be a voice for the status quo.  I haven’t gained the following I have for writing anything less than the truth, be it ugly or upsetting or otherwise unpopular. 

And I think that this is a representation of the broader political climate, which is currently KILLING me.

I've seen so much infighting lately between chronically ill people that were formerly friends and I believe that’s exactly what this administration wants.  I have friends who post things like “those who have employer-based health insurance aren’t immune.”  It's a privilege that I can and do work, I know that.  But it’s not easy.  My job takes the majority of my time, energy, and attention, which has meant that this kind of advocacy has had to take a backseat.  I’m not complaining, I’m just explaining.

And to be clear, my health insurance status since I got sick has literally spanned the spectrum.  I’ve had amazing faculty-level student health insurance, mediocre student health insurance, insurance through the exchange, Medicaid from two different states (not at the same time obviously), and now employer-based health insurance.

I actually just found out that I’ll be getting new health insurance through my employer soon as a result of the current insurance company raising my company’s rates over 50% as a result of the uncertainty in the market that the current administration has caused.  My company has done a good job, so I’m told, of finding coverage that is comparable to what we currently have.  But the prospect of starting over again in this realm is overwhelming.  While I had the same health insurance for all six years of my PhD program, in the four years since then, I’ve had five, and soon to be six, different insurances.

For someone like me, who sees a doctor more than once a year, the prospect of a new insurance plan is anxiety-provoking.  So for anyone who is under the false impression that a job guarantees you health insurance, it’s rocky and tenuous, even under the best circumstances. 

I’m scared and I’m worried daily, if not hourly.  I’m worried that at some point sooner rather than later, I won’t be able to afford my medication or insurance.  I’m worried that I won’t be able to get the care that I need.  And I’m worried that friends of mine will lose their quality or life, or their lives altogether, because of the very real possibility of the concerns that I just mentioned.  And I’m frustrated that in this time of great uncertainty, I don’t have the time or energy to devote to the fight that is so, so needed right now.  

And in reality, I know I am healthier than many of the people I know that have my same illnesses.  But I too worry about the vicious cycle of not being able to afford my medication or appointments, thereby not allowing me to work, thereby not having insurance.  It’s an everlasting loop of suck, or worse, debility and death.   

So that’s why I haven’t been writing.  I’ve been pondering the past, present, and future.  I’ve thought of how best to express all of this, and I’m not sure I’ve captured it adequately here. 

But I’m here.  I’ve been here for nine years this month.  It’s hard to believe.  And I don’t plan on going anywhere.  So keep reading.  Be patient.  Don’t give up on me.  Because together, we have a lot of fighting to do (and not with each other – that has to stop now). 

We are patients.  We are important.  Our voices need to be heard.  And we need to stick together.  While I don’t think it has ever mattered who is sicker or who has a job and who doesn’t, I think it matters even less now.  Our commonalities have to be stronger than out differences.    

#Iwillnotbesilenced AND #Wewillnotbesilenced

Friday, February 24, 2017

Product Review: Spoonie Essentials Box

** I have been given this product as part of a product review through the Chronic Illness Bloggers network.  Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. **

Seems like whenever I go AWOL from my blog lately, I come back to do a product review.  I promise to have several posts soon that aren’t product reviews.  But for now, this is a review for the Spoonie Essentials Box.

Watch the unboxing below and then read the rest of the review about the individual products and overall impressions of the box.  I wanted to put a lot of time and effort into this review as clearly a lot of time and effort went into creating this box. 


I was super excited about this since I’m really into various subscription boxes lately. 

Items are listed in the order I took them out of the box.

1.       Stickers – These are super cute.  I already have a project planned using a couple of them.


2.      Bark Thins – These look awesome!  I have wanted to try these, but haven’t had the chance to.

 

3.      Veggie Chips – I always love these.  A great (somewhat) healthy snack.


4.      Candy – As a general rule, if you’re doing edibles, I would do pre-packaged only.  This bag of candy tore open in transit.  It went straight in the garbage. 


5.      Bath Bomb – Smells amazing.


6.      Lotion Bar – Smells amazing.


7.      Chronically Fabulous Tumbler – I love this!  It is super cute and sparkly.  Will be taking it to work to use to increase my water intake.  Perfect! 


8.     Tea Bags – I love tea, so it’s nice to have a few tea bags that are different from the standard boxes of tea that I have. 


9.      Chronic Illness Warrior Keychain – Love it!  It’s already on my keychain.


10.  Organic Gummy Bears – We’ll see about these, not sure if I even like gummy bears…


11.   Paint Brush/Paint Set – Probably will donate this to my work’s collection of art supplies. 


12.  Spoonie Necklace – This is not my style, but very cute.  The thing I like the best about it is that it is created by a fellow spoonie. So that part is awesome!


13.  Happy Pills Pouch Cross Stitch Kit – I hate sewing!!!  Plus it’s kind of difficult with the arthritis in my fingers.  So I will probably pass this along to a friend.  But it is super cute! 


14.  Heart Socks – Love these! 


15.   Party Popper – This must have popped in transit, as there was confetti all over the inside of the box.  I couldn’t figure out what the plastic part of it was at first.


16.  Candle – Smells good, and is in a cute little jar.


Overall Impressions

To me, when I get a subscription box, my goal is to see unique things that I might not be able to find anywhere else or a grouping of things that I know I would not be able to get for that price elsewhere/separately.

I would say that this box sort of meets those requirements.  I’m a huge fan of the spoonie themed items, and for the most part, I love the items in the box. 

I appreciated that since it is February, the theme was about love and Valentine’s Day.  That and the spoonie theme, and it was a good combination.  I felt that the box basically stayed true to the theme.  And I loved the personalized touches from the creator of the box. 


I also love the packaging of the overall box.  It’s fun and bright, and I love the overall “I am visible” message. 


The two things that I am considering dislikes are mainly because they arrived damaged/broken. 

The first is the party popper, which appears to have “popped” in transit, as the confetti was all over the box and the popper was empty.


The second is a hand-packaged bag of candy.  This came torn open, so I ended up throwing away all of the candy that was loose and not individually wrapped. 

This didn’t bother me so much since I didn’t have to pay for the box, but I imagine that if I had paid for it, I would be disappointed if anything in the box arrived and was not in usable/edible condition.

Aside from these two items, everything else appeared to be totally fine other than the fact that there was something in the box, the smell of which permeated the entire box, which makes me think you have to be careful when you are including scented non-food products and food products together.  However, once everything was out of the box and I let it sit for about a day, it seemed fine. 

Would I purchase this box for myself on a monthly basis?  Probably not.  And for the price, I probably wouldn’t necessarily order this for a spoonie friend, either.  

However, I could see purchasing it if there was a quarterly option.  I personally love subscription boxes, but get overwhelmed by the volume of products in them, and I felt a little bit that way with this one. 

This box was definitely fun and unique.  It is also clear that a lot of time and effort goes into creating something like this.  I think this is great for spoonies who are worried about committing to a more generalized product subscription box.  It is also great if you are having flares and are looking for a pick-me-up.  

I am a huge fan of subscription boxes and the like because they give you the opportunity to try new products.  The Spoonie Essentials Box has a ton of stuff in it!  I mean, it took me almost six (6) minutes to unbox everything!  You can enjoy 10% off your purchase if you use the code “Chronic Blog”.  

Finally, here’s a recap of everything in the box:


 

Wednesday, January 11, 2017

Are We All Just Paying To Die?

I wrote a post in September, Doctors Are Part Of the Problem, But They Can Also Be Part Of The Solution, about a terrible appointment I had with my (previous) primary care physician (PCP), in which I was degraded and basically accused of faking my illnesses. 

But then the situation got a little bit worse. 

BECAUSE I GOT BILLED FOR IT. 

Not only that, but it was a bill for $125 for an “extensive physical examination.”   

When I get bills, I pay them.  Even when the amount is painful.  Even when the bill gives me sticker shock and I see red.

AS LONG AS SERVICES ARE RENDERED.

But if you try and charge me for services that were not rendered – and that we both know clearly were not rendered – I will fight back. 

(Cue “Ferris Bueller’s Day Off” – This is where Leslie goes berserk)

All I received was a lecture, and a misguided one, at that.  And then, to add insult to injury, I was billed for it.

I still can’t get over it.  Clearly.  The gull of the doctor.  Apparently he didn’t realize who he was dealing with.

I was so angry that I handwrote a letter.  I just couldn’t stop myself. 

I’ve included the letter here, both pictures of the handwritten version (which I promptly sent) and the text so you can read it (names have been redacted).

***** 



To Whom It May Concern:

I will NOT pay this bill.  On this date, at this appointment, there was NO examination.  Nothing was done other than Dr. _____ yelling at me for no reason.  I was accused of faking my illnesses.  I’m sorry that your office staff sucks, but as a patient, that is NOT my problem, and should not be taken out on me.  You can send this bill to collections if you are that petty, but I will fight it.  If Dr. ______ cares at all about anything other than the bottom line, this bill will be wiped.  It’s the right thing to do and he knows it.  My _____has an established relationship with Dr. _____ and I don’t want this to impact their relationship.  However, if this bill does not disappear, there will be a big problem.  I’ve never been treated the way I was that day by any doctor ever.  And I’ve seen a lot of doctors.  I will not pay money for services that were not performed.  That borders on malpractice.  I sincerely hope other patients will not be treated the way I was.

Leslie Rott

*****

Should I receive a call from a lawyer or a collection agency, I will be happy to them exactly why this bill will not be getting paid, and why, quite frankly, this doctor should not be practicing medicine. 

Additionally, I recently learned that, bloodwork I had put off and then had done, even though I have since made the decision never to go back to this doctor, not only did not confirm his belief that I was faking my illnesses, but did confirm my belief that he believed I was faking my illnesses. 

He ran a variety of tests, including anti-nuclear antibody (ANA), which is a diagnostic test, a confirmatory test, for autoimmune diseases, like lupus and RA.  If he was really curious, this is a test that he would have run when I first started seeing him.  But no.  There’s something cold and calculated about him running that test when he did that makes the situation all the worse.


I always knew that doctors like this existed, but I had never experienced one firsthand. 

Aside from the moral problems I have with this entire situation, I also have a practical problem.  Unfortunately, sick people need doctors.  I am chronically ill, and as a result of this situation, I no longer have a PCP.  And based on my past negative experiences – although this one being the most negative – I’m not too excited about finding a new one. 

But I need one.  And it feels like a lot of work. 

So I am left to wonder.  Are we all just paying to die?

Are we all paying to stay well and avoid becoming ill at all costs?  And then when we get sick, are we paying not to die?  Which, in the end, leads to the same, unfortunate, inevitable conclusion?

My Bubbie passed away at 90, and was pretty healthy until almost the very end.  But I watched the end of her life become the most physically and emotionally painful, and also the most costly.  I am 31.  I am not healthy.  So by that calculation, I will pay and continue to pay not to die.  The most costly times, health wise, are still in front of me, and in the end, I will die anyway.   

I can only fear that in our fast approaching new political climate, this situation is only going to get worse.  We will get poorer quality services at a greater cost to us.  And in the end, we will be sicker for longer, and we will die, sicker.    

We’ve already seen what happens when people in power use it against those who do not have that same power.  I’m not trying to get political here.  But I am using my voice.  And unfortunately, even though one of my New Year’s Resolutions for 2017 is to get un-angry and to focus on the positive, one power I do have is not to stay silent and to expose medical “ills” where I see and experience them.  Therefore, I am sharing this experience, despite the fact that very little good can be found in it. 

Because doctors like this are not doctors at all.  They use their power for evil instead of good.  They give the medical profession a bad name.  They make patients feel badly about themselves, they accuse patients of faking their illnesses, when they, themselves, in fact, are playing the system.  They are charging patients for services they did not render in the hopes that no one will have the time, will be too sick, or will not pay enough attention to take a stand and fight back.   They also make those who are healthy feel that doctors are too cumbersome, so they avoid them at all costs, until they become sick and have no choice.  

Thursday, January 5, 2017

2016: Year In Review

2016 began with my moving back home to Michigan.  It ended with dealing with the loss of my grandmother.  There was a fair amount that happened in between, some of which I haven’t even gotten the chance to write about yet (i.e. a new relationship, a move, and gum surgery).  So here’s what I did have the chance to write about…    

I lamented and celebrated pharmaceutical companies and pharmacies:




I struggled with negative emotions:




And the lows of chronic illness:






I celebrated the good things:


And mourned the bad:



And I reviewed some cool products:





Of course, these aren’t all of my posts from 2016, although there were a lot less of them than in past years, but these are the ones I felt were worth highlighting. 

I’d be lying if I said that the last several years have not been difficult.  I lost an uncle, both grandparents, and my dad over the last four years.  But regardless, I keep on keeping on.    

As always, at the end of every Year In Review post, I include a list of books I’ve read over the past year.  This list is much shorter than in the past and includes several that I have read before.  I think I started more books than I finished this year, but here they are:

1.       “Stir” by Jessica Fechtor (NF)*

2.      “Then Came Life” (NF)*

3.      “When Breath Becomes Air” by Paul Kalanithi (NF)*

4.      “NYPD 4” by James Patterson and Marshall Karp (F)

5.      “Spark Joy” by Marie Kondo (NF)

6.      “The Beach House” by James Patterson and Peter de Jonge (F)

7.      “Courtney’s Legacy” by George Cantor (NF)

8.     “The Trial” by James Patterson and Maxine Paetro (F)

9.      “Fairy Tale Interrupted” by Rosemarie Terenzio (NF)

10.  “Die Young With Me” by Rob Rufus (NF)*

(F) – Fiction; (NF) – Non-fiction

* Books specifically of interest to chronically ill readers

Wednesday, December 14, 2016

Failing As A Patient Advocate (And A Granddaughter)

I’ve been absent from my blog for awhile now.  It’s not because I haven’t had anything to say or write about, but more so because I wasn’t sure how to write about the things I was dealing with, or the things were in the midst of happening and I was trying to privately process everything that was going on.

The most recent thing I’ve been dealing with is the hospitalization, and ultimately, the death of my Bubbie (grandma).  She died November 30, 2016, at the age of 90, after spending almost a month in the hospital. 

Yes, I understand that she was 90 years old.  So please don’t provide lame platitudes about how she lived a good, long life.  I get it.  But that’s not what this post is about.  This post is about the complete and utter failure of our medical system, and the fact that as a patient advocate, I stood by and watched it all happen and felt powerless to stop it. 

My Bubbie went into the hospital on November 1, 2016.  She was released from the hospital on November 11, 2016.  She went back into the hospital on November 13, 2016, and never came out, much to my family’s complete and utter shock. 

Prior to this hospitalization, my Bubbie was exceptionally healthy for her age.  She lived independently.  She cooked her own meals and cleaned her own house.  She did everything.  We celebrated her 90th birthday in May and it seemed like there was no sign of her slowing down.   

However, after feeling tired and unwell for several weeks, she went to the hospital and was diagnosed with pneumonia.  She was put on oxygen and antibiotics.  She seemed to improve enough to go home.  She was discharged from the hospital, without oxygen – which she had never needed prior to this – for a day and a half. 

She started having additional breathing issues, and much to her disagreement, we made her go back to the hospital.  We were told that the pneumonia had resolved, and that the doctors weren’t exactly sure what was going on. 

And quite honestly, they didn’t really seem to care all that much.  I could tell by the way some of the doctors talked to her that they had written her off because of her age without getting to know her, and learning that she was sharp and clear-headed.  Unless of course she was deprived of oxygen or her carbon dioxide levels were allowed to get too high, and then she became disoriented.

But seriously, they talked to her like she was three years old, and they acted like she wasn’t capable of making decisions for herself.  They talked about her, around her, everywhere but at her. 

Part of the problem is that my Bubbie ended up spending so much time in the hospital, and most of that time confined to a bed, which caused fluid to build up and her muscles to weaken, amongst other things.  And we all know that the longer you stay in the hospital, the more likely you are to get sicker.  That’s exactly what happened to my Bubbie.  Although the pneumonia she was originally treated for had resolved between the first and second hospitalizations, my Bubbie developed hospital-acquired pneumonia. 

My Bubbie’s own primary care doctor, who was – operative word “was” – also a family friend, failed her because he was able to deal with her when she was healthy and only needed to be monitored routinely, but as soon as she required more, he was nowhere to be found.  He didn’t bother to call once or visit her in the hospital, despite knowing full well that she was there. 

And his associate in the hospital was an absolute joke.  When it was explained to us upon my Bubbie’s second admission that the reason she was sent home without oxygen the first time is that she was denied it, I asked the associate what would happen if she was denied it again upon discharge.  Ultimately, we never got to that point, but the doctor told me that it was a good question, but she didn’t know.  That answer was unacceptable and I told her so. 

Most conversations that were had were as effective as the previous one.  I wondered why we were having conversations about invasive heart surgeries that neither my Bubbie nor the rest of my family wanted her to go through, when our collective goal as a family, and my Bubbie’s own goal for herself, was to get her home. 

When it became clear that my Bubbie likely would not return to her previous state of independence, we were provided with the opportunity to talk to the palliative care team.  This occurred six hours before she passed away.  SIX HOURS.  When my Bubbie was sedated and could no longer make a decision for herself, when it fell on us because there was absolutely no other choice. 

These conversations don’t happen when they need to.  Or they don’t happen at all.  I totally understand now all of the stories I’ve heard of people saying that their family member entered hospice just a few days before they died.

Obviously, no one ever leveled with us and told us what was really going on, and what the likely outcome would be.  And this is despite the fact that unless it was the middle of the night, my Bubbie was never alone.  There was constantly a family member with her.  And we still couldn’t prevent all of the failures that occurred.         

I will say, the experience wasn’t all bad in that the nurses were incredible during this experience.  They were so kind and attentive.  They treated my Bubbie like she was a person and not like she was merely someone else’s family member.

However, my Bubbie did everything right.  She went to the doctor religiously.  She paid for good health insurance.  Again, up until this experience, she was in exceptional health for someone her age. 

It’s hard that she’s gone, but the hardest part is the guilt I feel for not doing more.  This is what I get paid to do.  I failed at my job.  But what’s worse is that I failed my family.  I failed one of the most important people in my life. 

I didn’t ask the hard questions.  I didn’t do a good job of shifting the conversation.  I didn’t do the things I felt needed to be done because I wanted to respect family dynamics and didn’t want to rock the boat.  I became passive, and I am not a passive person. 

As someone with a chronic illness, I’ve experienced firsthand how our healthcare system fails sick people, and now I’ve experienced firsthand how our healthcare system fails healthy people, who become get sick, and who die. 

I hope my Bubbie knows how much we love her and that we were there with her until the very end, even when we unknowingly ended up there.  I hope she knows that if we had been fully aware of what was likely to happen, we would have taken her home when that was still an option, when that’s what she wanted, when that’s what we all wanted.  

So take a good, hard look at the picture below.  My Bubbie was everyone’s Bubbie; that’s the kind of person she was.  This could be your grandma.  This could be anyone in your family.  This could be you.  

Eva Rott
May 27, 1926 - November 30, 2016