How do young people cope with chronic, debilitating conditions, like rheumatoid arthritis and fibromyalgia? Patient POV interviewed Lisa Jaffe Hubbell, a young woman, who only last month acknowledged to herself, that she is disabled, and is unlikely to regain function. Lisa is also a successful writer and blogger, who blogs regularly at Landguppy Productions.
In this interview, she discusses her concerns about getting quality medical care, affordability of health care, and why the presidential election worries her.
Can you tell me how long you have had rheumatoid arthritis? Is this the key reason you are now disabled? Do you have other conditions that are contributing to your disability?
I was diagnosed 10 years ago now, and I think I always figured I’d get better. Or better enough to be able to do most of the things I want to do. Over time, as more and more drugs worked for a while and then failed – and none worked fabulously – I came to realize I’d never be the same. I’d never go for a long hike, be able to prepare for a dinner party without having a few hard days after it was over, go more than a day without a mid-day rest. I’m not the chief jar opener any more. I can’t always bend over to fill the dog’s water dish. And she’s big and pulls hard when confronted by a dastardly squirrel. I can’t always hold her back.
My main diagnosis is sero-negative rheumatoid arthropathy, but I also have fibromyalgia, which rears its head when I have a flare. I also have an autoimmune thyroid disorder (Hashimoto’s disease).
What medications are you taking? Does your insurance cover these medications? Are they affordable?
I have had great medical coverage and mediocre coverage over the years.
The first few years, my insurance came from a small company and the copays became a significant burden. Biologics are thousands of dollars a month, and if I am responsible for a 10% copay, that’s hundreds of dollars. A couple of years I actually hit my stop loss limit, where you spend so much that the insurance company stops charging you copays. After that, I had insurance through Microsoft, which had no copayments. It was great. Now, I’m somewhere in the middle, with 10% copayments on my biologics –although I am enrolled in a program where the pharmaceutical company covers that copayment – and $15-30 copayments for other drugs. I have copayments for all my appointments, too.
My drugs change with my condition. Currently, I take Actemera, an infused biologic, every month. I take as little meloxicam as possible because my BP spiked about 18 months ago from the NSAID use and my kidney function started to look bad last month. I take Cymbalta and at night I take tramadol for pain. I’m off methotrexate because my liver function isn’t fabulous any more. My other meds are all related to side effects of the drugs I take for my arthritis. I take an anti-androgen called spirolactalone because my hair falls out from the atenalol I take for my blood pressure. I take omeprezol for my stomach when the meds upset it. One of my drugs – I have never figured out which – makes me sweat profusely, but only on my head. I’m not joking. Just my head. So I take a drug called glycopyrolate so that I’m not that sweaty girl when I go out in public. I also take fish oil, folate, B complex, CoQ10, a multivitamin, and because so much of what I take constipates me, a stool softener and Miralax.
Has dealing with insurance issues been difficult? How so?
My biggest problem happened at the end of summer, when a change of insurance companies forced us to complain a lot and often until they approved my infusion treatments. That I had been covered continuously and approved for the treatment by one insurer seemed to make no difference to the new one. My infusion was two weeks late, and a month later, I’m still trying to get back up to where I should be at this point after my infusion.
Is there anything that you’d advise people with your condition in terms of negotiating good healthcare?
Don’t be afraid to be a pain in the ass. And be sure that people understand that this isn’t just a little disease that causes pain. I have a shorter life span ahead of me, I am at risk for some pretty awful things like sudden gastric bleeds, sudden cardiac events, liver cancer. I could go on. This is a systemic disease that can impact not just my mobility, but my cognitive abilities, my vision. It will be, at least indirectly, the eventual cause of my death.
What kind of outside help do you get? If we lived in a more perfect outside world, is there any kind of help that you think you should be made available to you?
I have someone else do my garden and a cleaner twice a month. I pay for those services. I have a teenager who has to do a lot of fetching for me. Evenings are hard, and once I stop “doing” I find it hard to start again. I spent many years thinking I must just be lazy. It took a lot of therapy to stop those messages from running through my head. In a perfect world people would be more connected to their neighbors and none of us would be shy about asking for help. I’ve always been the helper, not the helped, so I don’t ask. I muddle through. My house isn’t as clean as it could be. I need the interior painted, but until I have 10 grand to spare, that won’t happen because I really can’t do it myself. Especially the taping off. Again, if I was more secure in my disability, I’d probably ask for more help. But that’s just too hard for me at this point.
As you became more disabled, have you had to make physical accommodations in your home, travel, work? How easy or difficult were they to arrange? Emotionally, how have you dealt with these shifts?
I haven’t had to do much of any accommodating except for reducing the quantity of what I do. I use my teenager to bend over for me. I do find it hard to get into my car. I have people carry my groceries to the car for me. I try to avoid stairs. So if I go to a concert, I ask for disabled seating, which can be crappy, or can be with the sound guy (the best seats sound wise in the house). I haven’t taken a flight in a while, but I think next time I’ll ask for a ride to the gate and early seating.
Compared with other health problems like diabetes or hypertension, how do you think others look at rheumatoid arthritis? Is there anything you would want other people to understand about this?
People don’t view rheumatoid arthritis as a bad disease. They hear arthritis and usually think “old people.” But that’s osteo arthritis. And while the joint damage is the same, the osteo version doesn’t come with other systemic problems.
It’s kind of invisible unless you are so sick you need a wheelchair or walker. People look at me in the disabled parking space and I’m sure some think I’m using my parents’ placard. But it’s mine, and while I don’t always need it, I usually use it. I view it as the only perk of being sick. I wish people understood how hard it is to just move – not always because of pain, but because of what doctors refer to as stiffness, but which I talk about in terms of feeling like I’m trying to move through thick mud or cement. And the fatigue is probably the most debilitating part of the disease.
How adequate are social supports in your life? In others with RA?
I have great friends and a wonderful boyfriend who understand what I can and can’t do. It can be an isolating condition, though, because you just don’t look sick.
Is there anything that you would want the world at large to know about a debilitating condition like RA and how you could live happier with it?
I think my biggest message is that when you see someone in a disabled space with a placard who looks like you, don’t assume they aren’t sick. When you see the house with the ratty yard that needs attention, don’t figure they are just lazy. The mom who never helps out in the classroom? You have no idea what her issues are. And ask if you can help with specific things. Asking if you can help with yard work, window washing, or something specific is better than telling someone to call if you need anything.
Because you live with RA, have you made any additional efforts to write a living will and advance directives than perhaps the next person not having RA?
I had a really bad flare last January and was sure I was going to die. I’d never felt that way before. So I redid my will and advance directives and trusts, talked to friends and family. I have every hope of living for at least another half century and try to live my life in a way to make that happen. I’m hopeful, though, not stupid
Are there transitions that may lie ahead that scare you?
I worry about what happens if Romney and the Republicans win. I haven’t gotten a divorce yet because I need my Wasband’s insurance. I can’t afford the kind of insurance I’d need to adequately treat my disease. I hope in 2014, the coming of insurance exchanges will allow me to divorce and find insurance that I can afford and that meets my needs.