Tag: medical

Posted on in disabilities, health, health insurance, life, medical

Just because you have MediCal doesn’t mean you can have a doctor

We were told it would take 4 weeks to transfer Rhia’s MediCal from one county to the new one. It took 4 months. A government shut-down slowed the transfer down even more. Plus, there was a huge backlog at the State level from so many people applying for MediCal through the Affordable Care Act. So, four months later, Rhia’s MediCal was approved and we were ready to find a doctor.

Just because you have MediCal doesn’t mean you can have a doctor.

Every clinic I called said they were no longer accepting MediCal patients; they had all reached their quota by February.

Great!

I asked the first two clinics if they were accepting new patients and they said yes. We started the intake process but as soon as I got to the insurance part, the answer was, “Oh… we’re not accepting new MediCal patients.” After that, I started the conversation asking if they were taking MEDI CAL patients. Two more clinics said no.

Finally, the fifth clinic said they were accepting MediCal. And, miracle of miracles they had an appointment open in only 2 weeks! I grabbed it, wrote it down, hung up the phone and burst into tears.

Everything was on hold waiting for a doctor. We needed a doctor to sign the forms so she could start her day-program, but that couldn’t happen until MediCal cleared. While we were waiting I was out hunting for a day program with an opening, so now she’s on two waiting lists. Thankfully one program had an opening in December and they were kind enough to hold the spot for her.

Since December! (Thank you, thank you, thank you…)

Access. The doctors are excellent here, but not everyone has access. How many more openings are there for MediCal patients? Did the clinic that accepted my daughter eventually say no to the people who called afterwards? How many people with disabilities are hunting for a doctor right now?

Posted on in disabilities, medical, tests

Is it weird I’m happy the doctor found something wrong?

Rhiannon had a Nerve Conduction Test last week. I assumed she would freak out, yell, cry, and punch someone (hopefully not the doctor).

Instead, Rhia sat quietly and allowed the doctor to connect the electrodes to her skin in strategic places. Then she held her step-dad’s hand while a small jolt of electricity was sent along the nerve paths. “That feels funny,” she said with a giggle. The electric surge increased in power, but all she did was stare at the doctor and say, “That feels very funny!”

Next came the acupuncture needles. This must be when she kicks someone, I thought. But the doctor was quick and the needles were very tiny. There was only one moment when Rhia glared at him because she figured out he was poking her with a needle. The entire test was done in less than 20 minutes.

And this time, the doctor actually found something wrong.

Do you know how many times Rhia has undergone tests? How often the doctor was certain he had found the answer to the cause of Rhia’s illness, only to have that test come back negative? Blood work and muscle biopsies have all come back good; no sign of illness or impairment. Even the genetic tests have returned inconclusive. What is causing Rhia’s ataxia and increasing fatigue? Why does her cerebellum keep shrinking? Why is her vision worse? Why did she lose her hearing?

I think the doctors are as frustrated as I.

But the Nerve Conduction Test found something! Her central nervous system appears intact, but the nerves that go out to her muscles are overactive. Even when she is sitting quietly, those nerves are firing like crazy. There’s too much “noise” in the muscles. Why? Not sure. But this test finally confirmed the cause of Rhia’s constant tremor.

When the doctor explained the “noisy” results of the test, I smiled., feeling a rush of relief. He found something! He actually found something! Look at the computer screen. You can hear the static of her muscles firing from too much nerve stimulation.

Rhia’s body is never calm; no wonder she’s exhausted.

Later, I bought myself a big box of Godiva chocolate to celebrate. Is it weird I’m happy the neurologist found something wrong? If you’ve been chasing answers like we have, you’d understand. After 20 years of negative tests, it was a relief someone found a clue at last.

Posted on in health, mitochondrial disease, parenting, special needs

Rare Disease Day 2016 


What is it like to live with a rare disease? This is what my daughter says:

“Doctors try to help but no one does.”

“I don’t know why I have ataxia and I don’t know why I can’t hear no more. No body does.”

“I have to go to the doctor a lot. That’s boring.”

“Everybody wants to poke me and give me a blood shot (blood draw)!”

“I used to be able to walk and not have to use a walker all the time but now I can’t and nobody know’s why.”

“Why is there no medicine to make me feel better?”

As her mom, I struggle to answer her questions. But what can I say? She is now 20 and has lived with an undiagnosed mystery disease her entire life. The closest label her illness has is Mitochondrial Disease. But which one? What type? How degenerative is it? How long does she have?

We don’t know.