Chronic illness forces you into the job you didn’t want (updated)

Some background first… Because I have health insurance through my husband’s employer I have no control over my insurance provider. As of the first of the year, our insurance changed, completely. We went from Cigna to Aetna. The Cigna plan didn’t have copays and the Aetna plan does. So on one hand, in the past after I satisfied my deductible and out of pocket (which has happened as early as March) I don’t have to pay anything. On the other hand, the Aetna premium is MUCH LESS but I have to pay every time I go to the doctor. With Cigna I could have my prescriptions (every 30 days) at my local pharmacy and after I satisfied the aforementioned requirements I didn’t even have to pay for prescriptions. Aetna also requires you to have all your prescriptions through their mail order pharmacy if you want to pay copays instead of 20% of the retail cost of the medicine – assuming I understand the insurance jargon correctly. Correction – see more below **: Aetna discounts the medicine by 20% and I have to pay 80% on the spot to be able to have the medicine that basically keeps me alive. My pain patches just cost me $372.24 for one month. Insurance saved me $69.05. I can file some kind of claim somewhere, somehow and get reimbursed some amount of money. I think?

Side note: I have a number of super expensive brand name medicines. All of them are super important for my quality of life or just straight being alive. The retail cost for my medicine that helps keep my migraines under control is a little over $1000.

Retail/local pharmacies process your prescriptions in like one to three days. It could take me over a week to get a new prescription processed with the Aetna pharmacy. Sure, it’s great that I can have 90 days prescriptions. However, I’d trade that for being able to easily ask a pharmacist questions almost any time I want without having to fight a confusing automated system that wants me to talk to it even though none of the options seem to apply.

All of this is the background for most of my yesterday. Yesterday I was making or receiving calls continually between 10:30am and about 1:30-2 pm. I had short breaks to eat. I had to call the Aetna pharmacy twice. I had to call the Aetna FSA twice. With each instance/department one phone rep was very helpful and one was the complete opposite. (One of the Aetna pharmacy phone reps had never heard of some asking to provide the pharmacy with their drug allergies and the supervisor I talked to was clearly wondering (“Why in the hell am I talking to this woman about this elementary shit?” She was not saying it very loudly.)

Anyways, I also started calling my doctor’s offices to provide new insurance and request refills on the meds I need soonest. For example, I used my last pain patch Tuesday night and they last 1 week. This means I have to make sure the prescription is sent to the Aetna mail order pharmacy but I also need to have a prescription for 30 days sent to my regular retail (now secondary) pharmacy. I probably have to do this four different medicines. All of them are at least a few hundred dollars each, at least the one over $1000 as mentioned above. I think I might also have to file claims for all of those medicines too and you can’t do that online.

Side side note: Mail order pharmacies, as well as FSAs that reimburse instead of allowing you to use the money directly assumes a certain amount of status and privilege. If we didn’t have credit cards I’m not sure how we’d pay for my meds this month. Also, this is why lifetime limits on health insurance benefits are very very very bad. I will have to get another medicine from the Aetna Speciality pharmacy. Depending on if you (if anyone even reads this) are an able bodied person who takes few medicines, or someone with a disease like me which requires extra special medicine, you may have never even known speciality pharmacies are a thing. I need to obtain my MS medicine this way. The last time I checked, in about a year and a half, maybe closer to two years, 90 days of my MS meds (Tecfidera) went from around $15,000 to almost $20,000. Assuming $20,000 that’s $80,000 for just one year of one medicine. You would think that pharmaceutical companies would want restrictions on lifetime benefits to continue to be illegal so that they can continue to make money off of their medicine.

So, all of these changes to my insurance and pharmacy options turned into working. I basically worked half a day and I ended up in pain from sitting still at a table for that long (not even in a hard chair). I also ended up with a tension headache. I didn’t ask for this job. No one pays me for this job. Sure, you could argue that I’m ultimately paid by my health being better – except that all of this costs me pain as well as physical and psychological energy that means I have less energy for other things. So it’s like I’m paying twice.

It’s still a job, regardless of what anyone says. It’s a thankless job that most people do not truly understand. It’s a horrible stressful job because it’s all full of red tape, corporations ultimately only worried about the bottom line, as well as doctor offices where often all the employers are overworked – and likely underpaid just like me? It’s even often an anxiety inducing job.

And all of this work doesn’t even account for the four to six other doctors I have to call and request refills from and or provide my new insurance too. I have a great deal more work to do in the following weeks

I didn’t ask for this job and I can’t quit it. I never have a day off. This is every day of my life. It doesn’t really have set hours either. (One of my doctor’s techs returned my phone call at 7:30 this morning. That’s outside of business hours.) This job doesn’t allow me to form any sense of community or connection and make friends. Basically, I’m a professional patient. Being a professional patient doesn’t have a clear job description. I can’t say that’s not part of my job. This job provides no sense of fulfillment because I have helped someone or created something – or any other reasons a job might provide you personal fulfillment – thereby improving your mood and quality of life.

It’s a horrible, stressful, and thoroughly unpleasant job and I wouldn’t wish it on an enemy and now I’ve spent almost an hour writing a blog post about an unpleasant day instead of doing something fun like playing Civ VI. This is why sometimes I just want to crawl in a dark corner, hide under a blanket and try to escape from the world.

Maybe in another blog post I’ll talk about all the paperwork and records organization I need to do on my own time that’s another part of my job as a professional patient.

Correction and updated added after I picked up some of my meds at the pharmacy. I still need to get one more filled and possibly pay over $800 for it. Also, Aetna lies. The 20% discount isn’t true for all medicines. I’ll save you the math. On the above mentioned pain patches, I was discounted 18.5% from the total retail cost. 20% would have saved made the final cost around $368.

Then I called Aetna RX again to try to get more information to understand this crap, despite my coverage information/paperwork saying that the cost is discounted, what I actually pay in a retail pharmacy is 100% of the “negotiated” cost. Negotiated means it can change whenever they want it too. It’s like my MS meds I mentioned earlier. Also, it takes 3 business days before they can “see” prescriptions requested by doctors but the phone rep couldn’t tell me why. We probably get to pay $800-900 for 30 days of my medication for migraines because of this “3 business days” BS.

Living the Chronic Life: You don’t understand

This isn’t nice and shiny. This isn’t about thinking positive. It’s not about Internet memes with serene landscape backgrounds. I’m not looking to sugar coat anything because this is life. Life isn’t fair and this is my life. Mine. I don’t care what you think or what you want to say, you probably don’t understand because you haven’t had my experiences. I don’t pretend to understand your life. I’m trying to be realistic.
You can pretend, you can try to empathize but you don’t get it. You don’t truly get it to the very core of your being. That’s where it matters. You can’t understand how soul crushing it can be to stop and think about all of the opportunities and experiences and potential I have lost. I’ll never get it back.
I’ve had my dreams and life plans taken from me. Stolen. My identity has been changed. It feels like it was overnight but really it’s been very slowly, excruciating so, over days and weeks and years. Some days I feel constantly reminded that I can’t do what I went to college for. I have 2 college degrees but can’t work like I planned to. I had hopes and dreams. I’m not talking about making millions here, I’m talking about wishing I could have my dream job where I’d be helping my community. Helping people. My ‘plan b’ was teaching in a community college. Instead, I’m a professional patient. Sometimes I think about what teaching would be like and I freeze up because I don’t know how much I remember from my education, or if I could successfully do something as simple as answer a student’s question.
No one asks to be sick when they grow up. No one says going to the doctor is fun, I want to do it more often! Being chronically ill is like a full time job that never has the same hours or work week to week. You never know what you’ll be doing, when, or where you’ll be going. You don’t get paid. Your life feels like it’s controlled by someone else, something else. Being a professional patient is difficult. No one is prepared for you. You have to develop your skills as you go and you must for your own survival. You’ll talk to doctors who don’t believe you or think you are seeking drugs.
 I don’t want to take these pills. Naps are nice but not having to nap is nice too. I don’t want to nap so much. I want to take a walk without worrying if I’ll hurt for three days afterwards. I would like to help people without endangering my health. I don’t want to be in pain every day for the rest of my life. I don’t want to be depressed. I don’t want to be anxious about whether time out with friends will cause me extreme physical pain for days and days afterward. I wish I could work instead of sitting at home watching Netflix. I wish I could receive a paycheck.
Some days I’m not sure I even know who I am anymore. Here in America, most people identify by what they do. Jobs or careers are important. Making money is important because it allows you to be independent. I cannot make money. I can only do so much in one day. Going to the grocery store is hard. Driving across town is difficult and painful. On the wrong day or a bad day, just standing in the kitchen and washing dishes is practically impossible.
My days are split up by eating, taking pills, maintaining my body with stretches, and sleep. Chores or doctor appointments are accomplishments. Walking out to retrieve the mail from the mailbox is sometimes a great achievement. Better days are no migraines or not needing any extra pain meds.
My sense of identity, my feelings, my memories, my cognitive and physical abilities – all of these things were changed without my permission. I have very little control over how I’ll feel when I wake up tomorrow morning. Or the next day. Or next week. Let alone next month.
You don’t understand. Not really. Not unless someone or something ripped apart your life, dreams, and identity and patched it back together in whatever haphazard way she, he, or it choose. If your life has been changed by some horrid trauma or event that you deal with every day and you can never really recover, then you understand.