Ani’s been chronically ill for several years now. It’s getting worse. She’s always been sickly. She reacted badly to her four month shots (and almost all vaccines since as well). At 2 she was diagnosed with insomnia. At 13 she was diagnosed with migraines. At 14 she was diagnosed with Celiac (which explained issues she’s had since she started eating solid food and going off gluten did help a lot). At 15 she was diagnosed with inappropriate sinus tachycardia (and is on a beta blocker for it). She’s almost 17 and a whole lot of doctors are trying to figure out what in the world is going on with her.
Her main symptoms are extreme salt craving, muscle weakness particularly in her upper back and neck, muscle aches particularly along the sides of her thighs, joint swelling, easy bruising, extreme fatigue that is worse when she first wakes up, constant nausea, dizziness, ringing in her ears, brain fog, frequent colds, skin darkening on various parts of her body such as her toes and arms kind of like a spotty tan, feeling like she can’t properly inflate her lungs (but pulmonary function test was fine), vision going black when she stands up no matter how fast or slow, depression, panic attacks, and feeling dehydrated. Her primary doctor had her test her blood sugar for a few weeks. She usually was in the 90s to low 100s fasting in the morning, 140s up to low 200s before dinner, and in the 80s and 90s two hours after dinner (insulin resistance pattern). Her thyroid has been thoroughly checked twice and is definitely not the problem.
She saw an endocrinologist last week. She’s testing her for Addison’s Disease in three weeks. Friday she’ll be having an MRI of her brain and brain stem to see if there’s some reason she’s having two migraines a week and has a constant headache all the time. Monday she’s seeing an immunologist to see if everything is related to an undiagnosed allergy or immune system problem. Mid-March she is seeing her rheumatologist to rule out chronic fatigue syndrome or fibromyalgia. She also will be having a sleep study because of her insomnia (edited: That has been scheduled for Tuesday night). That hasn’t been scheduled yet. Hopefully ones of these tests or doctors will get this figured out.
The biggest problem is how much being ill interferes with her everyday life. She had already concluded that traditional college is out for her. Her health crashes too easily. For the last three years, she started getting up early for seminary and made it anywhere from one to seven weeks depending on the year. This year she tried hard (seven weeks), but by mid-October she had been sick constantly since the end of the first week and it took until sometime in November before she could get out of bed to do more than just go to work. Luckily, she has managed to find a job she loves that can turn into a career that only needs on the job training and a black belt. She hopes to be able to take college classes, but on-line may be her only option. It was both sad and nice when the endocrinologist confirmed that’s really her future right now and attending college classes is likely to just make her health worse.
For a long time we’ve been not allowing her to do much because she pays for it with her health crashing. But we realized that that isn’t a good idea because she still is a 16-year-old girl. She deserves to have some fun in life. So, recently, we’ve allowed her to do more. She went to the MLK walk and to Pax South. And she had fun. She paid for it. She’s paying for Pax now (it was Saturday). But it’s better to have fun and then end up in bed for a few days than to be in bed most of the time anyway, but never get to do anything fun. She’s good at determining what is worth it and what isn’t.
It’s hard to have a chronic illness, especially when you are a teenager. It’s even harder to have no idea what it is. Sometimes I feel like we are on an episode of Mystery Diagnosis. We’re determined to get a final answer with this round of specialists and tests. We just need Ani to be healthy.