by Jennifer Lucio
My name is Jennifer Lucio and I have been dealing with several chronic illnesses since a very young age.
Around Thanksgiving 2011 I became very ill and was hospitalized. I was not diagnosed at that time. Instead, from 2011-2015 I was told all my problems were in my head. I saw doctor after doctor. Specialist after specialist. I saw a therapist, a psychiatrist and eventually a geneticist.
The geneticist diagnosed me with MITOCHONDRIAL DISEASE COMPLEX IV, a rare genetic disease. Mitochondrial disease basically means your body doesn’t produce enough energy to run your cells. Kind of like your body needs 10 batteries but it only has 3 or 4. With that, you get multi-system organ issues, connective tissue problems aaand you get to see specialist after specialist.
Once I had a diagnosis I was finally able to put together a lot of the issues that I had been dealing with, including
- gastroparesis
- chronic intestinal pseudo-obstruction
- kidney issues
- dysautonomia
- Ehlers Danlos Syndrome
- psoriatic arthritis
- and others
The GREAT thing about having a diagnosis is that I finally had confirmation that I wasn’t making it all up. I wasn’t exaggerating and it wasn’t all in my head. Trust me, I wanted to go to every single doctor I had ever seen and show them the test results. I wasn’t crazy. I wasn’t making it all up. Here’s proof!
Here are some of the things I learned that I hope will help you be prepared for living with a chronic illness.
YOUR SCHEDULE IS NOT YOUR OWN
Most people with a chronic illness come to know the struggle and stress of day to day living. You are not on your own schedule. You shape your life around appointments. If you miss an appointment it could be months before another opens up, so you’re forced to take what they give you. It’s essential to keep these appointments especially if you are on medication that is provided
d by that specialist. Going without medication can land you back at square one with your illnesses or cause you to go through withdrawals. It can also be used against you when you have to argue with your insurance.
BE ORGANIZED
Having so many specialists and medications means you need to be organized. Specialists tend to only focus on their specific body part or body system. They don’t think of other medications that you may be on. Working with multiple doctors and their directions is hard. You have to be proactive, you have to speak up and you have advocate for yourself in those situations.
SWITCHING INSURANCES
I was without insurance for a while (a story for another time). Once I was able to get back on insurance (Medicaid) I had to make sure I had the right plan – one that my doctors accepted and that covered all my medications. It was hard to do. There’s so much miscommunication between doctors, nurses, pharmacists and home health care. But you need to take the time to do it because the consequences of your doctor not accepting your insurance or the need to change medications because they’re not covered (or go without if there’s no alternative) can be devastating.
DON’T LET INSURANCE GET YOU DOWN
There have been times that my insurance won’t cover a test or medication due to the need for a prior authorization or medical justification from my MD. This can take several weeks, or even longer. I’m left in limbo just waiting and wondering when and if I will get a call to schedule my test or a letter in the mail that decides when and if I’m able to get treatment. The wait is so frustrating and you feel powerless. You can make this easier by working close with your doctor as a team.
GET POWER OF ATTORNEY
Some final advice, get your will and medical power of attorney set up, signed and notarized. With a diagnosis like mine we can be fine one second and the next we are on life support. It’s morbid to think about but it’s something that has to be done. Not just for your sanity but your family as well. Especially if you have children. It has to be legal and your wishes must be known and clear.
YOU CAN DO THIS
It’s really hard to keep fighting sometimes. There is so much red tape. Many providers that are not accepting new patients and not accepting Medicaid. Medical office miscommunications happen all the time and the constant stress of appointments and scheduling and rescheduling…it makes you feel like a burden on your family and society.
All I can do is take it day by day. Working with my therapist and psychiatrist and my other specialists, it really helps. I’m lucky to have providers who care, and a supportive husband, and family.
Advocate. Fight. Get second opinions. Say no to doctors if you think they are wrong, you’re allowed to do that. And try to not let your illness define you. You are more than a diagnosis; more than a patient; an ID band. You are a human and have the right to be treated as one. Never forget that.
Even in the darkest times when you feel you cannot go on or fight another day, just remember; if you get through the next 30 seconds you can get through the next minute, then the next half hour then the next hour. YOU CAN DO IT. Fight. You are worth it. Even if it means jumping through hoops, filling out forms every few months, juggling bills and dealing with daily life and medical issues, you CAN and ARE worth it.
If this article inspires just ONE patient or ONE doctor to look closer into their current diagnoses then I feel I have done my job.
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Editor’s note:
Patients Rising partners with Legalzoom because in the modern healthcare you often need legal services like setting up a Living Will, or a Last Will, or, like Jennie suggests in this article, getting Power of Attorney. If you join Patients Rising you can get access to a free year of Legalzoom’s Lifeplan which can help you do exactly those things and more. _______________________________________________________________________________
Jennifer Lucio is a mom and a wife from Texas. who has been struggling most of her life with mytochondrial disease. That rare disease triggered several other medical conditions including gastroparesis, chronic intestinal pseudo obstruction, Ehlers Danlos Syndrome, psoriatic arthritis and more. She no longer works, but when she did she was a Registered Nurse. Jennifer has gifted her words to our readers hoping to do as much good as possible.