Health for Sale

I know it's probably something you've all heard before. That medicine and Healthcare costs are way too extreme (at least here in the US, I can only speak to my experience).

You can't go a day without seeing someone post a fundraiser to help someone with medical costs. Usually it's someone who experienced a sudden illness or trauma, and people seem okay with donating to help. Which is awesome.

But I've seen something a little bit different when it comes to a person with a chronic illness asking for help paying medical bills. You may have seen different, and this is just my observations.

It stands to reason that people with chronic health problems will also chronically have to pay for the treatments of said health problems which means they may ask for money more than a person with the one off health incident. When this happens I've noticed on certain social media platforms that the person with a chronic illness gets met with anger or harassment if they've had to ask for help more than once or twice.

I wonder if it has to do with the general attitudes about chronic illnesses from outsiders being that the I'll person just isn't doing enough to "get better". I've seen comments towards people asking for help paying for a medication be told that they should just work harder, or economize and budget better to outright telling the person to just suck it up and make do without.

It's almost like these people don't realize how a chronic conditions works. I'm pretty lucky, I was approved to be placed on SSI and Medicaid. Unfortunately, not many people with chronic illness are so lucky. They may be unable to work, or can only work minimally, and are expected to be able to afford all the necessities (food, shelter, what have you) and their medications.

Just to give some idea I've got a bill from my latest series of infusions

This is just for a series of 2 infusions that I'm supposed to have every 6 months, this doesn't include the medications I take every day which range in price from about $10 US (managable) to $800 US. Per month. I take 10 different ones that each need to be refilled every month. 

Being chronically ill is expensive. Impossibly so if you are poor or don't have decent insurance. If you don't like seeing chronically ill people post about needing money, we need to work to fix the costs of medicine. It's a shame that people have to choose between debt and needed medications or a roof over their head or food. 

Error 404 Vein not Found

I know this is so passe and last year, but I had to make one

I had to make this when I got home from my Rituxan infusion today, it was nice to have an oncology nurse that had actually heard about Wegener's and knew my rhuematologist.

On the other hand, this had been around a while so when she expressed some puzzlement over what was going on with my veins and IV that it had to make me laugh.

For once I had a relatively easy IV placement. She went in through the side of my arm just below my wrist, she got the catheter in on the first try and it seemed that the vein was going to take the entire catheter rather than just the very tippy end of the catheter like it usually does. Then when she checked the IV with saline it started to burn a little. I didn't think anything of it, except that sometimes the saline burns. When she put the steroid in the IV it really started to hurt so I asked her to check it again to make sure that the IV hadn't infiltrated. She un-bandaged the IV and everything looked okay so she decided to put more saline through it.

At this time, for some reason, I feel like I am about ready to pass out. Everything has gone down to a pinpoint, I'm starting to get a little sweaty, and shaky feeling. Not something that has ever happened to me when I've had other IV's (which has happened often enough I should know how I normally react) placed.

The nurse looks up from the IV site and says, "I've never seen one do that before." I was expecting a lump or some other signs of infiltration but she said there was nothing like that, but every time she would depress the plunger on the saline my entire arm from my wrist to my elbow would blanch.

We ended up backing the IV out a bit and everything worked better after that. We're not sure why it happened, but it's always interesting when you can show long time oncology nurses things that they've never seen before.

Happy Anniversary

Somehow, my fourth year anniversary of having been diagnosed has come and gone and I didn't even notice until after the fact. Is that what they mean by "the new normal"?

I'm meant to be getting Rituxan soon. I started it while I was on my blog hiatus so I don't remember if I've mentioned having to go on it before. It works wonders! Really! For a short time I was able to stop taking the evil that is prednisone for a few months until I started having disease activity in my eyes. Since then I've been on a low dose and we're hoping that if I get on a more regular schedule of it I will be able to stay off the prednisone.

If you haven't struggled with that drug before you don't know how much that thought excites me!

Medical Science

I'm pretty frustrated with the state of medical science in relation to Vasculitis. There is a girl out there, fighting for her life right now in an ICU because her doctors did not know enough about the protocol for treating Vasculitis that they put her in a coma.

Imuran wasn't working so they switched her to methotrexate which she was only on for 6 weeks before they decided to take her off and give her Mercaptopurine. This form of chemo is not even approved for treatment of Vasculitis, unlike Rituxan which is the most obvious choice and the current go to drug for ANCA assoiciated Vasculitis. 

Now, the big warning on Mercaptopurine is this
 "Mercaptopurine is a potent drug. It should not be used unless a diagnosis of acute lymphatic leukemia has been adequately established and the responsible physician is experienced with the risks of Mercaptopurine and knowledgeable in assessing response to chemotherapy." (http://www.drugs.com/pro/mercaptopurine.html) 

Because they didn't even apparently know about Rituxan I am pretty sure that her doctors were not knowledgeable about any form of chemotherapy. 

This is why education and awareness is so important.