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.

Multiple Chemical Sensitivity

A while ago I mentioned multiple chemical sensitivity to my immunologist and he kinda just rolled his eyes at me. At that point I had not chased down any credible sources to explain multiple chemical sensitivity so I just moved on. It doesn’t help my case that a lot of good research for chronic diseases seems to occur OUTSIDE of the US.

Since realizing I’m sensitive to SLS – common in toothpaste – and apparently developing a sensitivity to the antihistamine in my nose spray and maybe also the ingredients in my eye drops, I’m thinking I need to revisit this. This means I need to visit Google Scholar which isn’t easy but the best way to find a credible source. The biggest problem I’ve had in the past is finding sources that aren’t 15-20 years old. I’m putting all this here so I can refer to it later since I will likely forget.

This looks like a great source but it’s behind a pay (subscription) wall.

This is an excellent source (pdf link) but rather hard to read. Checking out the references here led me to another way to search: “Idiopathic environmental intolerances.”

I’d love to read this article: Idiopathic environmental intolerances (IEI): myth and reality but you have to pay $35.95 to read it and it’s from 2001 so maybe it’s not as useful as it looks.

This one looks useful but, again, pay wall: “Multiple Chemical Sensitivity Syndrome (MCS) – suggestions for an extension of the US MCS-case definition

Another one behind a pay wall: Sensitivity-related illness: the escalating pandemic of allergy, food intolerance and chemical sensitivity. This lead me to finally remember to look up toxicant induced loss of tolerance.

Other definitely interesting things I stumbled on:

Idiopathic Environmental Intolerances (IEI): From Molecular Epidemiology to Molecular Medicine

Now THIS is interesting: “The Quick Environmental Exposure and Sensitivity Inventory (QEESI) is the most widely used screening instrument for multiple chemical intolerance. Coupled with a comprehensive exposure history, it is useful in diagnosing TILT. Researchers and clinicians use the QEESI to document symptoms and intolerances in exposed individuals and groups in whom TILT is suspected. Individuals find the QEESI helpful for self-assessment and screening.I’m going to print this out and take a look at it today. Except my low on toner printer is finally out of toner. (Thanks to amazon I know I bought that cartridge in May 2011 – graduated with my masters in Dec 2011.) Anyways. Maybe I’ll schedule a visit with my immunologist sooner than it’s time for my regular followup.

And there’s this little “book” too: “TILT – A New Class of Diseases: How Exposures to Chemicals Are Undermining Our Mental and Physical Health,”

My brain is tired now but this was way more fruitful and productive than I expected.

edit:

Another interesting PDF. Australian Government Department of Health and Ageing, Multiple Chemical Sensitivity: identifying key research needs

Odd article that I should probably reread. At first look it doesn’t seem objective or I’m just uncomfortable with the words “real disease” and “fake disease.

edit 2:

Links to the book “Chemical Exposure: Low Levels and High Stakes” and here’s the direct link to the PDF. I printed out the chapter about diagnosis and treatment.

Chronically sick and grieving

Apparently, I’ve been grieving for awhile. I didn’t get the memo.

Grief can occur in many different situations. It’s not something that happens only when you lose someone whether it be death or the end of a relationship.  Grief also occurs when being diagnosed with a life changing disease, the death of a pet, the loss of a job. A lot of people probably understand grief as something that occurs in stages. Culture is full of such references. Those five stages are denial, anger, bargaining, depression, acceptance. However, there is also thinking that grief does not occur in stages but rather in a cycle.  Here’s a great explanation of grief with possible causes, the stages, and how it can also be described as a roller coaster. I like the roller coaster idea better than a cycle. Regardless of which you prefer, I like “cycle” or “roller coaster” better because they are more fluid and have more motion than what you get from the word “stage”.

Where am I going with all this? Because of the counseling I’ve been doing for the last few months, I’ve realized I have a lot of grief in my life. I’ve lost access to foods, social events, hobbies and other fun activities, as well as easily completely tasks or chores because of my health. There’s a list of things I can no longer do because of all of my different health problems. I don’t want to go into listing all of them here. There’s also a list of things I’m grasping onto because I don’t want to lose them – like reading books regularly. My cognitive problems make reading harder than it used to be. One such example would be learning – the “hard way” – that I cannot complete light yard work without having something to protect myself from dust, pollen, irritants beyond antihistamines. This is on top of the restrictions I already need to deal with like not being able to work outside when it’s warm.

This realization that I’ve been grieving over the things I’ve lost in my life makes me think I’ve been self-absorbed these past few months. I understand, at least on a logical level, that this is because I’ve been doing a lot of internal processing. That kind of thing takes time and energy. Especially since I’ve been sick on top of my regular chronic sick life. I’m writing this on my fourth day of taking 50 mg of benadryl every 6 hours. (That includes setting alarms the last two nights to continue at the 6 hour intervals.

I don’t know how to cope with this realization that grief has invaded my life other than thinking I need to do something more than what I’m already doing. I knit almost daily and that helps me. At this point I think knitting is a form of meditation that works for me. To add something else for coping and processing makes me think that writing will help. I enjoy the act of writing. I liked writing papers in school, even though I hated starting writing said papers. This blog seems like a great way to start but I’m not sure of the details yet. I’d like to post about things beyond my health, emotions, or random crap. More book reviews perhaps? Writing prompts? I don’t know.

So far, I only know this. I feel like I’ve lost control of my overall life and that this is causing me to feel grief, anxiety, anger, and fear. This emotional stress is also hurting my physical health. I need to do something about it.

 

the sick life of a full time patient

If you are not familiar with the idea of the Spoon Theory, developed by a blogger with a chronic disease, but want to know more about how people with chronic disease(s) feel on a daily basis, you can find the explanation here. You can also read on to see why I have problems with this explanation of living with chronic disease. However, tt is important to understand this concept as it was originally presented because I think it’s important to see how the author came up with the idea “on the spot” in a restaurant when she was basically “put on the spot.”

The Spoon Theory is just the tip of the iceberg for people living with chronic disease – especially for people with more than one chronic disease. Chronic disease is often autoimmune, and so it’s not uncommon for someone to have more than one chronic (autoimmune disease).

I identified with this idea of the Spoon Theory when I initially started being diagnosed with chronic illness, such as my fibromyalgia. Initially it seemed to fit. But then I started reading more about my health, understanding more about my health, and over the weeks and months I began to realize it doesn’t always apply. It cannot account for the unpredictability that is life when you have a (seemingly invisible) chronic disease. The Spoon Theory is too black and white. Life isn’t as easy is black and white. Nothing is that clear and concise, except maybe death, taxes, and medical bills. Life is gray, and chronic disease is even grayer than gray. The Spoon Theory even makes living life with chronic disease easier than it actually is.

The main problem with The Spoon Theory is that it does not take into account so many other things that are part of the life of being a full time sick person. I cannot go to the doctor, be given a medicine and expect to feel better in seven to ten days. More than one doctor has told me that he or she will help me, but has no idea how long it will take. First, right now, I am a full time patient. One of the primary reasons I cannot currently work is because I see so many doctors, too often. There’s not enough time to travel to and from appointments, keep my own medical records up to date and organized, pick up new medicines at the pharmacy and work a full time job on top of everything else every single adult person would like to be able to do with his or her life. (What’s a vacation?)

Second, it does not account for the shame and guilt a person with chronic disease, and chronic pain and/or fatigue feels when they have to ask for help from their friend, family member, or care giver – again. I’m lucky; I’m married and my husband is extremely understanding and reliable. He helps me out. I wish I could help him out as much as he helps me out. Also, it does not take into account the anxiety and stress involved in seeing a new doctor either in a new specialty for a new “problem” or having to find a new doctor because a doctor refused you care. Or, the fear of going to the emergency room because something is wrong but you don’t quite know what.

Third, it does not account for the mental fatigue and internal anguish caused by having your identity stripped away or otherwise altered against your will. Once I was a full time graduate student and intern at a local nonprofit organization. I was learning, and helping, hoping to be able to aid people further after I achieved my degree. Now? Sometimes I’m too tired to figure out what to make for lunch, let alone figure out what household chore needs completed next.

Fourth, The Spoon Theory suggests a normal versus abnormal mentality. Everyone has bad days. Everyone knows what it’s like to have a bad night of sleep. Everyone can take a nap and regain some lost energy. The Spoon Theory focuses on physical energy and physical fatigue. The Spoon Theory is useful in explaining how people with chronic disease have reduced energy and increased fatigue. But, beyond that the analogy loses some of its power because of the normal (them) versus abnomal (us) mentality – because it’s explaining how the sick people are different from the health people. Perhaps we should do more than focus on perceived outward differences.

Possibly the biggest problem with the Spoon Theory, is that it does not account for the invisible nature of many chronic diseases and the judgement that someone with reduced physical and or cognitive abilities deals with on a regular basis. I don’t look sick. However, I might act high, confused, or otherwise just “dumb” because of chronic pain, chronic fatigue, or side effects from medicines – including but not limited to pain medicine. I am sick.*

And one more thing, the Spoon Theory does not account for the fact that having one or more chronic diseases and living with chronic pain and or chronic fatigue changes how a person approaches life. It also changes how other people approach you, when you are the sick one.

I think I no longer identify as a spoonie,** at least not primarily. I’m not quite sure what I do identify as right now either. I feel like a full time patient, full time kitty mom (we do have 4 cats after all), a part time knitter, a part time writer, and a part time wife.

I live the sick life. At times the sick life is lonely and scary, full of unknowns and scary monsters. Other times, the sick life is just like, well, life.

 

_____

*I don’t think the word “sick” as it’s defined in the English language is specific enough to cover all aspects of sickness. We need more words.

**spoonie definitions vary depending on who you talk to or where you read.