The real cost of being sick

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 There is so much more to chronic illness expenses than doctors appointments, tests, and prescriptions. Those are the more obvious expenses. Those are costs that you can control to a certain extent with the type of health insurance  you have. These are some of the less obvious costs…

Lets start with diet.  I don’t mean the kind of diet you go on when you want to lose weight. I mean the kind of diet that completely changes how you eat. I won’t say that I avoid trigger foods altogether–I am human. I know [emotional? you just said “eating” which is good!] eating it is not the best idea, but sometimes it’s emotional therapy.

Many times the prescriptions that people with chronic illness take can cause digestion and gastrointestinal  issues as well. What that means for me is I can not rely on a good quality multivitamin to catch any lapse in diet. A good quality highly absorbable multivitamin can cost fifteen dollars or more per month.

The reality is fresh fruits and vegetables cost almost twice as much as canned or frozen fruit. Why is this an issue? Well this ties into the digestion issues. Many people with chronic illness cannot process the additives, extra sugar, processed sugar, and preservatives as well. This makes canned and frozen fruits not the best choice. I am not saying I never get these but its not my preferred choice, and I always have more issues after eating these foods.  I am lucky in my diet the only issues I have are preservatives, additives, lactose and corn.  This still makes it difficult, it could be so much worse.

While my family normally tend to be fairly healthy eating to begin with even before I got sick, it’s not even a choice now. It is how we have to live.  This is not necessarily a bad thing, just another hidden cost people don’t think about. I did do about six weeks of juicing with fresh fruits and veggies. It worked really well, and I did feel better. It cost me  about forty dollars a week. When it came down to it, I had to start focusing on making sure my family had enough groceries for the week and not just enough to juice.  Its great to juice or make smoothies, but I still have to feed my family.

Next we have what I like to call my toolbox. A list of things that you can do to help alleviate some of the chronic pain that goes along with chronic illness. Oh just take an Epsom salt bath every night. I use Icy hot and love it. Pick up some Tiger Balm. Pain patches, supplements, and exercise are what helps me.  It is one thing to say that but here is the hidden cost.  To be effective you need to use at least a cup of Epsom salt per bath, while recommended amount is two. At one point in order to take a just plain Epsom salt bath every night I was paying roughly fifteen dollars for salt each week.  This is just plain epsom salts. This was not for the ones that have added benefits of lavender or menthol or eucalyptus, rosemary or ginger added to them.  Not to mention its not like I can just jump into the bath tub any old time I need to.

Then you also pick up a variation of rubs, creams, and ointments. Each of these run from as cheap as five dollars up to twenty  bucks each. Since we often use them multiple times daily, we might get a week or two out of a tube or bottle–if we are lucky. Pain patches, however wonderful they are, are one short use and they are done. Five dollars for five patches that if you stretch it can last you four days. It gets to a point that you can easily be spending fifty to sixty dollars a month on these kinds of things.

There are some more natural remedies that you can take to help bolster the prescriptions that often you have to take. I have gone off a lot of prescription medications and have gotten down to my bare essentials so to speak. My bare essential prescription cost is about  [$150] {or} [One hundred fifty] every three months.  It was almost that a month at one point in time.

It is easy to say “go pick up a supplement.” Looking at quality matters a lot here. Turmeric, which is great for chronic pain, is a minimum of ten dollars for a month supply. Then often people in chronic pain use Magnesium which can be relatively cheap, again the type and quality counts here. The one I have had the best success with is fifteen dollars a month. I use a strong omega three supplement as I have both heart issues and mental health issues, and that helps with both.  I also take Melatonin as opposed to a prescription sleeping aid.  It is not hard for me to spend fifty dollars or more on supplements [a month? how long?]. Fifty dollars is where I am at right now with just the basic cannot-do-without supplements.

This is really just the first layer of unseen costs of being chronically ill.  This is not even taking into consideration that the kind of mattress you sleep on matters, keeping shoes fresh and supportive by changing them out every three to six months.

This does not even take into consideration that people that have chronic illnesses tend to not be able to work but yet not meet the terms for disability through the government.  I am lucky I have decent insurance and my costs are low comparatively speaking. Shockingly enough, to many the answer is not through medicaid, I actually paid more and struggled more going through the medicaid system.  The stress the system puts you through to jump through the hoops to get what you need……it’s unbelievable.  Even with the good insurance we have now my out of pocket expenses are anywhere from 100-150 a month. This is not including prescriptions that are significantly cheaper with insurance.  This is what I have it boiled down to as essentials. It could easily be twice that.

I often deal with people who are very flippant about my chronic issues because they are not visible nor are they the same from day-to-day.  To date my diagnoses are: Myofascial Pain Syndrome; Chronic Fatigue Syndrome; Fibromyalgia; Degenerative Disc Disease of cervical, thoracic , and lumbar spine; Irritable Bowl Syndrome triggered by a corn intolerance; Supra-Ventricular Tachycardia;  Raynauds; malabsorption of Vitamin D, Potassium, and Magnesium; severe outdoor allergies which borders on allergic asthma; OCD with tendrils of ADD.

I don’t look sick. I don’t like to talk about being sick or what I can or can’t do. If I am discussing it in detail with you, I trust you a lot.  I am not willing to continually prove my conditions to people over and over. What would I do to do that? Carry X-rays and MRI reports and blood test results around with me constantly? I am not being lazy or taking the easy way out and yes I can read that in your eyes. After dealing with Doctor after Doctor after Doctor who did not believe me, I can tell exactly who does and doesn’t believe me. Some of the disbelief comes because I was super active and really did a lot one day. The next day it takes everything I have to get out of bed. I am paying for being so active. When you have a kid, you tend to push yourself to do more, for them.

I have gone through the disability process with the government. Essentially they believe I have the issues I have but because I can parent to some extent and function to some extent, I am not disabled. What I was doing when I was working and trying to parent was not functioning.  I was a mess. I could not enjoy any time with my daughter. I focused on getting through the day til I could medicate and hopefully sleep. I had no quality of life, not to mention the immense damage to my organs that the prescriptions were doing. It has taken two years off of three medications to get my liver and kidney functions to somewhat normal levels. TWO YEARS.

It has been a long hard road to get my health back to some extent.  We are lucky that we have family and close  friends who understand and help us. We are functioning, barely, at a fourth of what we were earning when both of us worked full time, and this is with my husband working two jobs to help support us. If anything ever happened and he could not work, we would be completely screwed.

************************************** some exciting news in store***********************************************************

 

Below is a brief outline of the campaign, which illustrates what we’re trying to achieve and how people living with chronic conditions can help.

 

Via the “Hidden Cost of Chronic Illness” campaign, Debt Advisory Centre aims to raise awareness and visibility of the challenges faced by those living with chronic and ‘invisible’ conditions. We’re also conducting our own research into perceptions of chronic illness, especially in relation to the work environment.

 

 

We’d like to know the following about the patients that use your services;

 

  • How long they’ve had their condition.
  • What their specific condition is.
  • How it affects them (professionally, socially, emotionally)
  • What things they have to purchase in relation to their condition.
  • What other financial disadvantages they face.
  • Roughly how much they spend per month in relation to their condition.
  • How they feel others perceive their condition (employers, friends, strangers)

We’re keen to gather as much user-generated content as possible and welcome contributions via email and video.

 

Once we’ve gathered the information, we’ll combine it with research we’ve conducted ourselves and research supplied by other organisations ourselves. We’ll then be distributing and sharing those findings with the media.

 

Patients can find out more by visiting the campaign page http://www.debtadvisorycentre.co.uk/advice/Illness-and-Debt-What-are-the-Hidden-Costs-of-Chronic-Illness-0-4163-0.html

 

Please note, if you aren’t already aware, that Debt Advisory Centre is a fee-charging debt solutions provider and not a charity.

 

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