Why this blog?

Welcome! Thank you for visiting my blog!

This is my medical and recreational blogsite. Some of the entries on this blog are honest and quite vulnerable, as I wrote them at my lowest point. I try to keep a positive outlook on life, because no one wants to hang out with a downer, including me. Writing these entries has allowed me to see the world through a beneficial filter that allows me to appreciate every moment I have been able to experience in my life, even the difficult ones.

My husband Matthew and I LIVE when we can. I mean we suck the juice out of life, and we aren't ashamed of that outlook. It makes the bad times ok somehow because we took advantage when we were able. The pictures on this blog are part of that. I take pretty pictures of my sick body to boost my self esteem when I am having a difficult time seeing myself as a woman instead of a sick person. It is how I cope with my illness, and no one gets to judge how you survive your difficulties. So live on, and feed your souls.

Watch our story here:

https://www.youtube.com/watch?v=mG_mrDJ10LM&feature=youtu.be


~ Tonia

I have decided to relaunch my Facebook Page, The Beauty in Illness. Along with the help of two other rare patient advocates, we are hoping to include artistic stories of struggle and perseverence through creative ways. Please check us out and let us know if you would like to contribute!




Hospital Me THEN (2012)

Hospital Me THEN (2012)
Dance like no one is watching!

Hospital me NOW (2015)

Hospital me NOW (2015)
Dance like EVERYONE'S watching

Post Transplant-1 Year (March 2014)

Post Transplant-1 Year (March 2014)
Mi Amor Studio

Pre Dialysis Pinup Shoot (2012)

Pre Dialysis Pinup Shoot (2012)
Dynamite Dames

Mid Dialysis Boudoir (March 2013)

Mid Dialysis Boudoir (March 2013)
100 pounds, and a week from transplant, chest tube tucked into bra like a lady. ;)

Non-Pinup Me Now (2015)

Non-Pinup Me Now (2015)
This girl has four kidneys

Monday, March 10, 2014

I am expensive

Yeah, this is an Explanation of Benefits for me.  It is the first of the year.  So as you can see I have my entire deductible due at once.  The reason for that is that Soliris is $51,691.00 a dose.  A DOSE. 

Recently I watched a video online about how Obamacare has ruined everything and that premiums are going up for some people and so are their deductibles.  I am sorry to hear that, really.  But these people were complaining that they had to go from $500 deductibles to $1000, or even $1,200 deductibles.  Um..wow.  Wanna trade?  

Some of these people were healthy, and some had their own issues.  But none of them were sick enough not to be able to work full time jobs, so I don't consider them chronically ill with debilitating illnesses.  Sorry for the assumption.  I did work full time from 2006 to 2011 with aHUS and honestly looking back have no idea how I did that.  Oh I remember, by being hospitalized every break I got and Skyping classes from my hospital room.

Every statistic, including the famous Forbes Magazine article, says that Soliris costs $500,000 a year roughly.  Now, by my calculations, that would indeed make each dosage between $15,000 and $20,000 give or take.  SO WHY DOES MY EXPLANATION OF BENEFITS SAY IT COSTS $51,691.00???  Because by my calculations, that would end up being around $1,343,966.00 a year.  Every year.  For the rest of my life.  I am 33.  I hope to be at least 53, but let's be generous and say I live to be 73.  If I need nothing but Soliris for the rest of my life and don't have any surgeries or other treatments ever, it would still cost Blue Cross $94,077,620.00 just to keep me alive.

So.....I think it is a fair assumption that Blue Cross hates me and wants me to die. 

Now.  Alexion, the pharmaceutical company that makes Soliris, is making $1,343,966.00 a year to keep me alive.  They don't want a cure at all, they are having a great time with my aHUS diagnosis.  They only wish I had been diagnosed in 1999 instead of 2011!  So, that means that the 300 or so aHUS patients in America using Soliris to survive are making them about $403,189,800.00 a year.  Just in America.  And THAT doesn't account for the PNH patients that need Soliris for their disorders.  I won't even count them.

So...I think it is a fair assumption that Alexion loves me and wants me to live without a cure for a long time.

Don't get me wrong.  Alexion has been very kind to me.  They have offered counseling, they check up on me every two weeks, and they are very helpful when I have questions.  It is clear they pay their customer service representatives a lot of money to work there.  One has even haggled with my insurance company while I was on the phone in a three way call.  She was ruthless.  And if she was going to lose her company even ONE dosage of the precious drug, it would be half a year's salary for her I am sure.  I am not judging Alexion.  I couldn't be more glad they exist and that this drug is available to me, and that they have made it clear to insurance companies it is a medical necessity. 

I hate to add politics, but my own family member said to me that people are demanding benefits without working to get them.  Now, when these political people (I don't want to generalize by saying republicans, because I am not making a political statement.) say that nothing is free and you have to earn what you make, I agree with that partially.  But I can't work full time.  I just can't.  We have a one income household now, since this diagnosis.  I almost died from working so hard all those years.  And I "earned" a $94,077,620.00 disease to show for it.  I am dependent on my husband.  If I didn't have him, I would be dependent on Medicare alone, and in three years I won't be able to even have that.  I would have no choice but to be on government programs including food stamps, welfare, medicaid, or handouts.  Anything that would keep me alive.  I didn't earn aHUS, and I didn't ask for it.  I would LOVE to be completely healthy and independent.  I would love to just have an annual pelvic exam and an occasional z-pac when I got sick.  I would love to not have doctor's numbers on speed dial.  But I don't have that luxury.

So before we start blaming people for wanting the basics in life, like being able to afford medicine, food, and shelter, let's look at the reality of the situation.  Someone is making a lot of money out there on people like me.  And it's not me.  And if you are reading this, chances are it might not be you either.

If you are reading this and you are one of the people profiting from my disease, could you lend me $3000?  I have a deductable to pay.




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