The Cost of Lupus
We all know illness has a cost. Anything that you live with for longer than a week, or that changes the way the body behaves has a cost. This is not just because you need to do things to help your your body recover, but this is also because you may need to take time away from certain things whilst this happens. There is a cost in what you have to weigh up of can and cannot do. What you gain versus what you lose. I talk a lot about how much you lose with lupus and chronic illness, but I want to show you more what cost this sickness has on me, financially. In a way we can all understand.
Firstly, I want to make it known these costs are responsive to the fact that I am a student with a concession account. This provides me the luxury, and it is a luxury, of a Health Care Card. If I wasn’t a full-time student, I would be able to receive financial assistance simply due to the cost of the all the medical payments I make annually.
Since I was born I have been covered under Private Health Insurance. I cannot say which cover I have, what it entails or who I am with. What I can tell you is that now, as a single independent adult I pay an average of $40 per fortnight and it includes ambulance cover and hospital cover.
Approximately once a year for the last few years I have taken a ride in an ambulance. Whilst I have ambulance cover with my Private Health Insurance, I am usually sent the bill for which I am reimbursed after payment. The cost of this bill is just under $1,000.
I have a life-saving membership with the MedicAlert Foundation. The cost of this membership annually is roughly $35.
Tests and Scans
Every five weeks I have a blood test. They range from $47.83 to $12,278.91. These are covered by Medicare mostly. Any gap costs are sent onto my private health insurance over.
Every two months I have an MRI scan on my brain. Most of these are arranged through public health system and come at no cost, however due to the Government costs to Medicare I can now expect the appointment to as likely be a private one, costing me an average approximation of $250.
Every six weeks I see my neuroimmunologists at Royal Perth Hospital. There are normally at least two or three certified specialist doctors as well as two medical doctors who are undergoing research and further professional development and study as they attempt to specialise in their chosen field. Provided the opportunity to have lower rates on many Sometimes I also have an intern. So four to six doctors can be in the room two of whom are specialist doctors. These are in a public health circumstance, and so have no financial implication for me. If they were private the cost would range between approximately $60-$250 with an out-of-pocket or gap fee. This fee could be upwards of 20% of the total specialists cost.
My monthly prescription medications are charged are the rate afforded to me by my Heard Care Card concessions. So instead of the pharmaceutical price, all my prescription medications cost $6.20. I take two antihistamines daily that are not covered by my Health Care Card and thus are fully price at $11.69 and $22.78. I have 7 daily medications, meaning on prescriptions I spend $43.40 a month with the discounts. If I didn’t have this help I would be spending $126.44 a month on medications.
For my food I always ensure it is fresh and without additives, so meat comes from fish mongers and butchers, fruit and vegetables come from fresh grocery stores NOT chain markets. This makes the cost of our food an average $10 to $15 higher than usual. The benefit in this area is that with my diet I cannot eat foods too high in sugar (fructose and starches), so the money is saved from bad snack food. The same with sauces, which we make all our own flavourings, sauces and marinades fresh and from scratch so again, money saved there. Fast food, or any food prepared outside of the house aside from occasional special meals, do not enter into my diet.
My diet does not include supplements. This is a wonderful way to save money.
With epilepsy I cannot drive. There is a fee for my car licence and insurance regardless, but the cost of fuel is low. Travel money is in my SmartRider, onto which I pay $20 a fortnight. This seems like a win to me, even if I am paying for a car that I don’t drive often.
Hygiene and Maintenance
As to hygiene products allow me to clarify. I have skin allergies, which contrarily cause me to avoid anything that goes on my skin. The lotions for allowing skin allergies do not work so I do not use any. The only skin application I use is Rose Hip Oil on my face. The strongest and most effective sunscreen cream (Invisible Zinc SPF 50+) I have found and adore costs approximately $29 for a 100mg. It is expensive but worth it.
My body does not allow me to clean my house too often, but when I do my cleaning, there are not always significant prices but it needs to be said that I have to buy a lot of my products from organic supermarkets so they are as low on chemicals as possible. These products are an average of 5% higher than their supermarket, mass-produced counter parts.
So, as you can see, this health thing has a cost. Not just an emotional one either. While I am lucky to have a lower rate on the extra costs I am required to pay. Were you even aware of the cost of some of the medications? Did you think about the cost of the tests? Not even I was aware of how expensive my urine was until all this started. In the United States I would be expected to pay upwards of $2,000 per MRI, which causes me conflicting levels of grief.
In all, it is safe to say I am a high maintenance girl in a sticky wicket financially. There are no words to convey how grateful I am to my family for accepting me as I am and forgiving me for being a burden at times, if not emotionally than definitely financially.
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