Thursday, September 28, 2017

New Doctors, New Problems

To be clear, this post isn’t about having problems with new doctors.  Quite the opposite. 

I finally found a rheumatologist that I like!

And I finally found a PCP that I like! 

But the problems is, the more doctors you see, the more problems they find.    

It all started with the foot doctor, actually.  I found out recently after seeing a foot doctor that I need foot surgery.  But before we went forward, my foot doctor wanted me to have a circulation test.  When I went in for circulation test, my blood pressure was 124/100.  The doctor put me in a different room and had me lie down.  Half an hour later, my blood pressure was the same.  He told me that he couldn’t do the circulation test, that I needed to have my blood pressure evaluated, and that if I showed up the day of surgery with a blood pressure like that, he wouldn’t be able to do my surgery. 

So I scrambled to find a new PCP, someone I could tolerate, who could help me navigate this issue.  The truth is, as I told the foot doctor, that since I’ve been sick, my diastolic blood pressure has run high, but no one ever seemed to care that much about it.  I think I can count on two hands the number of times in the last almost 10 years that my blood pressure has been normal.  I guess I just have enough other things wrong with me that high blood pressure wasn’t really that concerning to anyone.

But now it is.  Now it’s standing in the way of me and my “new” foot. 

I saw this new PCP, who I happen to really like.  In a matter of two weeks, I will have had lab work, a renal ultrasound, an echocardiogram, and two appointments with said PCP.

I am also now the proud owner of an Omron machine, as my PCP strongly recommended that I take blood pressure readings at least twice a day for the two weeks between appointments.

And although my PCP had told me that she wouldn’t put me on any medication until my next appointment, apparently test results and previous labs and records changed her mind.  So I am now taking blood pressure medication.

And in the back of my mind, I’m thinking – all of this for a foot? 

I should be grateful that something that has seemed problematic for such a long time will finally be figured out.  But honestly, I’m overwhelmed.  I can handle pain like a champ.  I’ve learned to deal, learned to live with it.  But the fact that my body can’t get control of something basic so that it is supposed to control is honestly really scary. 

Obviously, the hope through all of this is that I will get medical clearance and will be able to go forward with my foot surgery, which is currently scheduled for mid-November.  But it feels like there are a lot of hurdles to jump between now and then, and I do have a bad foot, after all.

This is the Wildcard #2 prompt – New Doctors – for RA Blog Week 2017. 

Sunday, September 24, 2017

My Public Comment On Graham-Cassidy

I don’t usually post on the weekend, but I wanted to make sure to get the word out.  There’s still time – until 9:00 a.m. (eastern) on Monday morning, September 25, 2017 – to submit a public comment in opposition of the Graham-Cassidy bill.  Below is the comment that I sent to the Senate Finance Committee on Friday morning regarding the bill.

If you’d like to submit a comment, email   

We must fight for the right for healthcare, especially for the most vulnerable among us.

I am one of millions of Americans with a pre-existing condition.  And based on what I’ve read, I could see insurance premiums that would cost me more than I earn in six months. 

Graham-Cassidy would effectively destroy my life and make it worse than just living with multiple pre-existing conditions. 

Our society is built on the idea of the American Dream.  Not only would Graham-Cassidy destroy my life, it would destroy my dreams.  I have a PhD, and yet, I won’t be able to afford food or rent, and definitely won’t be able to afford the medications I need.  If I won’t be able to afford my medication, I won’t physically be able to work. And I know that our government will make it impossible for me to get disability benefits if I can’t work. And if I die, I know the government won’t pay for my funeral. 

So basically, you are throwing the baby out with the bath water.  You are taking a leaking ceiling and rather than fixing the leak, you are tearing down the whole house. Does that make any sense?  Didn’t think so.  And neither does this bill. 

As politicians, you have power.  And with that power, comes responsibility.  So voting for a terrible bill simply because of campaign promises to “repeal and replace”, and following through on those promises at any cost, is an abuse of power and dereliction of duty.  Replacing something good with something that is far worse is simply not an option.  It shouldn’t even be on the table. 

The productivity that this country will lose for all of us who become too sick to work without having the necessary coverage we need to function, will be profound. 

And it profoundly saddens me that to make yourself feel better, you will potentially hurt and/or kill millions of people. 

So please, if you believe in the American Dream, if you believe that America can and should be a positive example for the rest of the world, and if you want to use your power for good, vote no on Graham-Cassidy.  The ACA is not perfect, but Graham-Cassidy is much, much worse. 
I didn’t ask to be sick.  It’s not something I planned on happening at age 22.  And I have been fighting for nearly a decade to live.  Graham-Cassidy calls all of that into question. 

I hope that you will not turn your back on the millions of people that aren’t hurting you by needing healthcare, but will be very hurt by not having it.  

Where is our humanity?  What happened to empathy and compassion?  Please stop and prove that all of these things still exist in our government today.

Thursday, September 21, 2017

Too Rich To Be Sick, Or Too Cruel To Be Kind?

There is so much going on in our world today that is simply heartbreaking.  The things that are happening are beyond words.  But one area of my life where I refuse to be silent is where my healthcare is concerned.  And right now, a bunch of rich, white men are trying to take my – and your – healthcare away.  And as far as I can tell, the only real reason why they are doing that is because they can.  

The last time I checked, no one – rich or poor – has emptied their pockets to pay for my healthcare.  The only one who has been bled dry physically, emotionally, or financially, is me.

So please, stop putting forth this argument because it is convincing those in power, whether they should be or not, that healthcare is a commodity, that it will be bought and sold to the person that can pay the highest price.  Except the highest price isn't monetary.  It's life.  And death.  

It's a zero sum game.  Because the rich will win again.  They can buy their way out of almost anything.  I worry now more than ever that what I thought was the most difficult fight of my life, the daily battle of living with chronic illness, didn’t start almost 10 years ago.  It’s starting right now.  It’s starting with convincing those in power that my life is worth living.  That even though I am sick, often in pain, and may have more medical expenses than my “normal,” healthy 32 year old counterparts, my life is valuable nonetheless.  

Let me explain how my life works at the moment.  I take no less than seven pills a day.  On most days, that allows me to function; to wake up, eat breakfast, sometimes take a shower, drive myself to work, work an eight hour day, drive myself home, and make dinner for my boyfriend and I.  But do you know how tenuous that is?  I don’t even have a day grace period.  If I forget to take my medication or run out of my medication, I have one day before I will feel like I got hit by a truck and will barely be able to get out of bed.  Sure, my illnesses are managed, but only by medication and a crack team of doctors.  And because I can afford all that.  Because the moment I can’t, almost 10 years of hard work will have gone completely down the drain.  I will have gone from living life despite illness, to not living at all.  

I didn’t ask for this.  I didn’t ask to part with a large portion of the money I make to go towards medical expenses.  I didn’t ask to literally use all 10 days of my paid time off every year to go to doctor’s appointment after doctor’s appointment, only to take unpaid leave for all the rest.  It’s insulting to suggest that somehow I benefit, or somehow others lose out, because of my healthcare needs.

Then you have rich white boys who think that they can go from rock and roll to politics and they further arguments such as this one – that their pockets are being made thinner because I am sick and they are not.  Someone in my home state of Michigan is vying for a senate seat and this is an argument that they are furthering. That some people are sick and everyone shouldn’t have to pay for it. But isn’t that the whole concept of insurance? You pay into because some day you might need it? 

So basically you’re too rich to be sick? I guess it’s more the case that if you get sick you can afford to pay out of pocket. I can’t. Read my lips: without medication, I...WILL...DIE.  And when that happens, I assume no over-privileged white guy is going to pay for the funeral. 

I think it’s important, though, to acknowledge that there are people out there, celebrities, who are bringing awareness to chronic illness and chronic pain.  However, they have money, too.  When one cancelled her tour,  she was able to do that because she can afford to take time off.  When another got a kidney transplant,  she didn’t have to worry about taking time off for it, or not being able to afford the surgery or the anti-rejection drugs she will need to take for the rest of her life – even if she someday finds herself without insurance.  So when the U.S. Pain Foundation applauds these folks, and states that they prove that “Pain is an Equalizer,”  I call bullshit.  It’s true that just because you’re rich, doesn’t mean that you are immune to pain or illness.  But you certainly don’t deal with it in the same way that someone who has to decide whether to take care of their health or pay their rent does.  They can take the time they need to recover.  Most of the chronically ill people I know cannot.  And that needs to be acknowledged.  

I feel that the current healthcare debate has drawn a line in the sand and made it more apparent who the “haves” and “have nots” are.  And with that comes a profound feeling of being left in dust, of being hung out to dry.  And that no one beyond those in my inner circle care about what happens to me.  That not even my own government cares.  And why should those who will never have to want for anything care?           

What these people fail to realize, is that with this impending decision, we all pay a price.  For me and my chronic peeps, not being able to afford the care we need will mean we are less productive and less able to do the things we want and love to do.  In a lot of cases, it might even mean that we die.  Not having our contributions will diminish us all.  But the rich people that want to turn their backs on the rest of us, a small part of them will die, too, because deep down, they know what they are doing is wrong.  And they simply don’t care.    

What happened to our humanity?  What happened to empathy and compassion?  What happened to helping each other out, out of the goodness of our hearts?  The money you have doesn’t make you a good person.  It’s how you treat others.  It profoundly saddens me that this is what our country has come to.  And I hope that for all of our sakes, we win this fight.  Because if we don’t, we all stand to lose, some of us more than others.