Category: health

Posted on in health, mitochondrial disease, special needs, vision impairment

The Newest Normal

It has been more than a year since Rhia began losing weight, and we still don’t know why. What triggered weight loss, increased ataxia, decreased stamina, and vision loss? It began so slowly that I didn’t notice how thin she was or that her ataxia had worsened. It was like watching my hair turn gray; one day I realized I had more gray in my hair than I thought. When did the gray strands outnumber the brown? When did Rhia become so thin? Blood tests and an MRI hunted for answers but as usual nothing was found. Rhia is still the same medical mystery as she has always been.

One year later, Rhia has stabilized. She’s still too thin, but she is staying above 90 pounds. Her ataxia is so bad she rips the pages of her books when she turns them and she often pokes herself in the eye with a crayon when she colors. The only thing keeping her walking is will power. But since the beginning of the Summer she hasn’t gotten any worse. Usually she declines a little for a few months and then we all breath a sigh of relief and figure out how to manage her new normal. This decline lasted longer than ever before. Is that the new normal? Instead of a sudden crash lasting a few months her physical decline will be like a long, slow glide into looming rocks?

Welcome to the newest normal. Rhia has finally stabilized and now we both figure out how to manage the newest symptoms. She needs Physical Therapy to rebuild muscle so she can keep walking. She needs Occupational Therapy to help her learn to turn a page in a book without tearing it. She needs Speech Therapy to help her clearly speak so others can understand what she’s saying and she needs to relearn to chew her food so she doesn’t choke. She needs knee surgery to stop her chronic pain.

I need her to wear safety glasses to stop her from scratching her own eyes with color crayons. I also need her to tolerate a gait belt so I can safely transfer her from sitting to standing as well as getting in and out of the car. No matter how much I beg, or command, she won’t do either of these.

Today, this is the newest normal. Rhia is cheerful, determined, funny, and more stubborn than I, which I know is hard to believe. Her entire body trembles from ataxia now, not just her legs. Her color and contrast vision are much worse; she can’t tell the difference between orange and yellow anymore. Today she weighs 92 pounds. She’s trying to figure out how to keep doing what she likes to do and I’m trying to figure out how to help her do that.

The one thing that hasn’t changed is her smile.

Posted on in caregiving, disabilities, health, opinion, teaching

You have the Power to Save Lives

You have the power to stop Covid19 and save lives simply by following the guidelines of health professionals. That’s it.

No one is asking you to stay home to take away your liberties. No one is asking you to take precautions to inconvenience you. And absolutely no one wants to shut down the economy and destroy people’s lives and futures because of politics. No one.

You are being asked to shelter in place to protect and care for those most vulnerable, people like my daughter, my father, my sister-in-law, and all the medically fragile kids I work with. And by doing so you also protect yourself and the people in your family. Covid19 attacks young and old, healthy and frail, which is why everyone needs to be vigilant.

Please. I am begging you.

You are a part of a community. What you do impacts your family, friends, co-workers and neighbors. Being an American doesn’t make you invincible or give you the right to put everyone else at risk. Just like there is a difference between Freedom of Speech and Hate Speech, there is a difference between Personal Liberty and Negligence.

Millions of people are suffering right now from fear, illness, and poverty. We all want to get back to work, including me. I’m one of the lucky ones who can work from home, but as a teacher, I would much rather be with my students at school where I can help them cope with the impact of this pandemic. If we open our doors and all return to work and school too quickly, more people will die. We must wait. And wait…

I don’t know what the future will bring for myself, my students, or my daughter. All I know is right now, today, I can take care of my child, myself and my community by staying home, washing my hands, wearing a mask and gloves when I must go to the store and waiting. That is all any of us can do.

Posted on in health, life, medical

The Sickness

Rhia is slowly understanding that something very strange is happening in the world right now. She calls it “The Sickness.”

“The library is still closed? It’s been closed for weeks!” she says, putting her library books back on the shelf where she keeps them separate from her own books.

“I know, but there are a lot of people sick right now, so the library needs to stay closed,” I say.

“First everybody is sick at your work, and now there is a sickness at the library… That’s silly!”

“You’re right. It is.”

“Why is everybody so sick?”

“There’s a bad germ that can make people sick. That’s why we’re staying home so we don’t get sick too. And if we stay home it helps other people not get sick.”

Rhia is quite for a moment, then she says, “I remember when I was little there was a sickness at my school and we all had to get a shot. I didn’t like that.”

Many years ago there was a meningitis outbreak at Rhia’s Elementary school. “I remember, too.”

“I didn’t like getting a shot. Do they have a shot for the sickness now?”

“No. That’s part of the problem. If there was a shot, then people wouldn’t get so sick.”

“Hmmm…” Then she asks, sounding worried, “Do people always get sick in San Francisco?”

“No. This is just a weird sickness happening now, but not always.”

“When will people stop getting sick?”

“I don’t know. Maybe in the summer.”

“It doesn’t make any sense! Why is the sickness now?”

“No one knows, Sweetie. We just have to wait until it ends.”

“I think that’s just silly!”

“I agree.”

She thinks again, then says, “Can we go to the library next week?”

I don’t know how to tell her Disneyland is closed too.

Posted on in caregiving, disabilities, health, life, mitochondrial disease, special needs, strength

Survival Skills from Rhia

Rhia and I are sitting together watching Frozen in the middle of a rainy Sunday afternoon. We’re safe and healthy, blessed with a warm house to shelter in and plenty of food. During this time of so much sickness, what more do we really need? The interesting thing is that not much has changed in our daily lives. Before Covid19, Rhia and I lived a quiet life. We rarely went out to eat or visit friends. Our life pretty much revolved around trips to the library and to Starbucks for a hot chocolate. Occasionally people came over, but that too was rare. About once a month I had caregiving coverage so I could go out with friends. So our ordinary life is about the same, except for the library being closed.

Isolation is nothing new to us. Neither is fear. Rhia and I have lived with the uncertainty of an undiagnosed disease since she was born. Every time Rhia gets a cold or a high fever I wonder if this will be the one that puts her back in the hospital. She almost died once after a flu and then a few years later she was hospitalized with pneumonia. The slow decline of her physical health coupled with the lack of a diagnosis means we have no idea how long she will live. One more year? 5? 10? Her doctor’s thought she’d never reach age 20 but she’s almost 25. Every prediction has been wrong. Living with a see-saw of hope and fear makes us prepared for the uncertainty of this pandemic.

This isn’t some kind of “welcome to my world” post. Not at all! I am heartbroken that millions of people in the world are facing illness and death and the constant uncertainty about tomorrow. I know what it’s like to be broke and unable to work because you have to care for loved ones, and I wish no one had to deal with that. I am grieving for everyone and praying for a miracle, just like everyone else.

But what I’ve realized during this Shelter In Place is that Rhia has taught me incredible skills about survival. She has taught me how to live right now, enjoy all of the small moments of life, and feel gratitude. She has taught me it is okay to feel afraid, sad, or angry, and that you should give yourself time to grieve when you need to. She’s taught me how to get up in the morning when I really didn’t want to. She taught me how to walk with fear and not let it overpower me.

I’ve also learned very practical skills, like stock up on essentials before you need them. I never knew when Rhia might get sick or just too tired to go to the store, so I always have supplies (including TP) to get us through a couple of weeks. A few times I’ve needed something urgently so I called a friend or Instacart. When we first moved here I set up our Earthquake kit, which means I already have plenty of water and batteries. I always fill up the gas at a half tank and carry tools to repair her wheelchair everywhere we go. I also have managed to scrimp and save a couple of months of survival money. When you live with constant uncertainty you learn to be ready.

There have been times when I’ve resented Rhia’s disability, especially lately. I long for my own life, one that doesn’t include constant interruptions of sleep. I want to travel, but who will care for Rhia? I resent her dads who get to live their own lives and friends who go to all those places I long to see. But right now, I feel blessed. I am scared and tired and stressed out, but blessed. Rhia and I are safe and we have everything we need to get through the pandemic. We are both healthy and I pray we stay that way. Travel and going out aren’t important. What matters is love and caring for each other. I will care for Rhia for as long as she needs me, and she cares for me in a thousand ways that it took a pandemic for me to see.

When the pandemic ends, and it will, I won’t forget what I have learned. I pray none of us do.

Posted on in disabilities, health, holidays, life, medical, mitochondrial disease, strength

Rhia almost left 8 years ago

Rhia drinking a hot chocolate at Starbucks, age 20

8 years ago, Rhia spent Easter in the hospital, hooked up to IV’s and undergoing too many tests, because she had almost died. Two weeks earlier she’d had the flu, but even when the virus ran its course and the fever vanished, her body didn’t recover. She slept all the time, could barely speak, and her eyes became blank and unseeing. Then she started choking on water. We rushed her to Stanford Children’s Hospital and they admitted her for Metabolic Distress.

It took a couple of days to stabilize her and a full week before she could go home. It was during that time we got an official diagnosis for the cause of her disabilities: Mitochondrial Disease. Her doctor’s had suspected it was “Mito” but until she was hospitalized they weren’t certain. They still weren’t; the tests came back negative but all the symptoms pointed to Mito. The possible causes of her ataxia and degenerative neurological symptoms had been narrowed to the spectrum of Mitochondrial Disease.

But what did that actually mean for Rhia and her health? Would she recover from her medical crisis?

They let her go home when she could swallow water and other liquids again. She still couldn’t eat food, so she was referred to a Speech Therapist to relearn how to swallow again. If she didn’t recover, she would need a feeding tube. Time would tell…

Later, we were told if she reached the age of 20 it would be a miracle. She was 16.

8 years have passed and Rhia is still here. She turns 24 next month, and thankfully she did learn to eat food again. And she’s still walking, although I swear she’s walking because of tenacity, not strength and coordination. She never fully recovered her energy and strength from 8 years ago, but she and I learned to manage her new “normal” and find ways to cope with her increased fatigue. Some days are great; she sings and laughs and loves exploring her new city. Other days she can hardly hold a crayon in her hand. She’ll sit and stare into space as if all her energy is needed to stay upright. It can switch back and forth every hour.

We roll with it because this is a part of Rhia. No matter what, she keeps smiling and I keep trying. Both of us get frustrated sometimes, but we both find a reason to laugh. It’s impossible to stay sad for long around Rhia.

Rhia smiling, wearing glasses, and drawing with a large marker.

How long will she stay here with us? No one knows. Her doctors are amazed and thrilled to see her thriving as well as she is. Who is this remarkable person who keeps surpassing everyone’s expectations? She is my daughter and I am so proud of her.

Thank you for these extra 8 years. I treasure them all. And I will treasure all the years we still have together.

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 creativity, happiness, health, holidays, life, writers, writing

New Year, new permission to be creative

Well this is embarrassing; I haven’t written anything since November. Since that was the start of the holiday season it’s not too surprising, but it is a sign that when life gets hectic, writing stops. Does it stop for you as well? How do you keep the words flowing when you’re swamped by family and work and friends and activities that all seem so damn important.

Friends and family are important! But so is writing. Writing keeps me focused and centered, which makes me much easier to deal with. You’d think my loved ones would insist I write every day. “Here Terena, take this mocha and go to your room for an hour and write. You’re getting bitchy.”

I do it to myself; writing brings me happiness, but doesn’t benefit anyone else. I feel selfish when I take the time to create and rest. Most of the women I know feel the exact same way; our creativity doesn’t matter unless someone gives us permission to use it.

Bullshit! That’s my new mantra for the New Year: Bullshit!

Starting right now, I give myself permission to write. Permission to speak. Permission to have fun. Permission to take care of myself. Will you give yourself permission to be your most creative self?

Permission is just the start; you have to also follow through and do it. But if we wrap our brain around the idea that what we love to do is important, then we’ll take the time to do it. As long as we don’t think it matters, we’ll put everything and everyone above what we really want to do. I want… no, I need… to write. I can’t explain why and it doesn’t matter. I don’t need to justify my need. Justification ties in to permission. I don’t need to justify why and I don’t need anyone’s permission other my own.

No matter what you love to do, give yourself the time and energy to do it. Whether you love to garden, paint, sew, cook, sing, dance, take pictures, or knit baby booties, do it! Do it with all your heart. Even 30 minutes doing what you love will feed your creative soul.

But no guilt. Guilt kills creativity and happiness. If all you have is 15 minutes while hiding in the laundry room because your kids won’t stop bugging you, do it then. Don’t beat yourself up because you only had 15 minutes! Praise yourself for carving out a few minutes to be creative. No excuses and no guilt. We can do it!

Of course I have to follow my own advice. Who’s gonna help me?

 

 

Posted on in author, books, caregiving, disabilities, family, happiness, health, strength

How To Work Self-Care Into Your Family Caregiving Plan – Guest post by author June Duncan

The following is written by June Duncan, author of The Complete Guide to Caregiving: A Daily Companion for New Senior Caregivers, coming in Winter 2018. Click the link for more information. 

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How to Work Self-Care Into Your Family Caregiving Plan

When your life revolves around caring for another person, it’s hard to make time for yourself. But if you don’t, you could end up burning out, leaving you unable to continue caring for your loved one.

Caregiver burnout is a serious problem for people caring for elderly family members. It’s known to contribute to depression, concentration problems, and substance abuse, and even leads some caregivers to mistreat or neglect their family member in need. The cause? Chronic stress from neglecting your own needs as you care for another’s. For that reason and more, it’s important that family caregivers find ways to fit self-care into their schedule.

First, healthy meals should be part of any caregiver’s day. Preparing nutrient-dense meals is not only good for the senior in your care, it also ensures you get the nutrition you need to keep illness at bay. Develop a list of healthy meals you can prepare in 30 minutes or less to take the guesswork out of mealtime. When finding time to grocery shop for ingredients is a challenge, grocery delivery services or food subscription boxes can simplify the process.

Likewise, committing at least 30 minutes per day to moderate exercise like walking or gardening helps caregivers meet the activity levels recommended for physical health. If you exercise alongside your family member, it helps their health as well and provides an opportunity to bond — plus, finding time to exercise is easier when you can bring your charge along. For more vigorous exercise, consider signing up for a fitness class at a center that also offers classes for seniors so you both can benefit.

To round out the physical health side of things, ensure you get plenty of sleep each night. Not only does poor or insufficient sleep limit your ability to cope with stress and control your emotions, according to the National Heart, Lung, and Blood Institute it could also contribute to depression, increase the risk of chronic health problems, and lead to dangerous mistakes like giving the wrong dose of a medication.

Of course, your needs go beyond the physical. It’s also important to take care of your mental health so you have the capacity to treat your family member with patience and kindness rather than reaching for alcohol or drugs to alleviate stressors. This may seem simple enough at the beginning, but stay true to yourself even when things get really tough.

Chronic stress, like the tension many family caregivers experience, can lead to serious mental health problems that include depression, anxiety, addiction, and even cognitive impairment later in life. And although many people don’t realize it, stress is also intimately connected to physical health: According to the American Psychological Association, chronic stress can cause muscle pain and digestive problems, suppress the immune system, raise blood pressure, and contribute to serious illnesses like heart disease and obesity. Since stress can affect every aspect of your health, it’s clear that keeping it under control needs to be a priority.

To manage stress while providing caregiving, identify stress relief techniques you can apply throughout the day, like flowing through a meditative yoga sequence, practicing 4-7-8 breathing, calling a supportive friend, taking a power nap, or visualizing a relaxing scene. Each of these stress-reduction strategies can be done in 10 minutes or less and requires nothing more than a quiet space, so you can employ them at a moment’s notice when you need relief.

It’s not unusual for family caregivers to feel guilty about taking time away from their charge, but self-care is an essential component of a sustainable caregiving plan. When you take care of your own physical and mental health first, you’re better equipped to handle the challenges of caregiving with dedication and grace.

Image via Unsplash

Posted on in caregiving, family, health, life

A hospital connoisseur.

My father needed a quadruple bypass this summer, so I flew to Oregon to be with him through the procedure and during his stay at the hospital. He was understandably terrified, and I admit so was I. But the procedure went well, his heart is strong, and he went home after only a few days in hospital. Now it will simply take time for his sternum and the incisions to heal. So far so good.

While I was with him at the Oregon Health and Sciences University Hospital (OHSU) I spent a lot of time exploring the sprawling campus. Seriously, that place is huge! And confusing. Floor 9 is the main floor while my father’s room was on floor 17 of an entirely different tower from the main hospital. It’s built on the side of a hill with incredible views of the city of Portland and the Willamette river. From my dad’s room we sat and watched the sunlight change the colors of snowy Mt. Hood. From a terrace below his room, I could see Mt. St. Helen.  I took a hanging trolly down to the water’s edge and then walked to the City center, about two miles. If you have to have major surgery, have it done at OHSU.

I’ve spent way too much time in hospitals in the last ten years, which makes me somewhat of a hospital connoisseur. My daughter has twice been a guest of Lucille Packard/Stanford Medical Hospital. My husband was hospitalized twice at University of California San Francisco (UCSF) for cancer treatment. And recently my daughter was a guest at our local, rural hospital due to pneumonia. I have tasted the food, walked the halls, interacted with staff and doctors, watched the nurses closely, taken in the views, strolled the neighborhood, and fought with insurance companies at some of the best hospitals on the West Coast. And OHSU is the absolute best.

It comes down to staff and communication. OHSU beats all the other hospitals we’ve dealt with in staffing levels and nursing care. Every single nurse was positive, helpful and considerate. Everyone worked hard to maintain a patient’s dignity and to communicate with them to alleviate fears. And if a nurse needed information from the doctor, she got it quickly. No paging the doctor for hours like at UCSF. Plus, the rooms were large and comfy, super clean, and had great views.

The downside to being a hospital connoisseur is the PTSD that hit me every few hours. While sitting beside my father I would suddenly feel the same panic I did when my daughter was hospitalized for metabolic failure. The past and the present would blur until my body didn’t know the difference. My father was resting comfortably, but my heart would pound the same way it had when my husband was groaning in agony. The only cure was walking. I’d pace up and down the halls, outside on the terraces, up and down stairs, walking to town and back… just walking until the panic would subside I could feel the present pushing away the past.

This is old fear. Don’t let it blend in with the new fear. Will my father survive his surgery? Will he heal? Will my husband’s cancer come back? Will my daughter crash again? 

shhhhhh… let it go. Keep walking. Keep breathing.

Now that my father’s surgery is over and he is well, I have one more request from the universe: no more trips to the hospital this year!  I don’t need to explore new hospitals, or even old ones for that matter. Please keep my loved ones healthy and safe. Keep me healthy and safe. I may be a hospital “pro” now, but it doesn’t mean I want this to become a habit.

Posted on in caregiving, disabilities, events, health, mitochondrial disease, parenting

Not the only Mito Kid in the world

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My daughter Rhia and I spent the last four days in Seattle at the Mitochondrial Disease Medical Conference. Hundreds of people with mitochondrial disease, their family, parents, doctors and researchers gathered at the SeaTac Hilton Double Tree Hotel to discuss potential treatments, research breakthrough’s and symptom management. The conference travels from the East to the West coast. This year it was only a two hour flight from our home, so my daughter and I decided to go.

The main goal for us was to meet other young people and kids with the disease. Rhia was convinced she was the only person in the world with Mitochondrial disease. There is no one else like her who uses a wheelchair because her legs are “too lazy” to walk (her words). No one else is deaf-blind and no one else has hands that shake.

Rhia quickly learned she isn’t the only girl on the planet. At the conference, she met a girl who uses a wheelchair because she too gets too tired to walk far and tends to shake when fatigued. We met a young man who has the same doctor as Rhia and has dealt with all the same tests and procedures. We met a young woman with thick glasses who struggles with seizures while trying to go to college. A young man who used to play sports but now spends more time in bed than on the field. We met teenagers and young adults from all over the US who battle mitochondrial disease every day just to have some kind of self-actualized life.

No one else is deaf-blind, though. I spent most of my time interpreting sign language so Rhia could understand what people were saying. It was a challenge to help Rhia become included in the group. They could all talk about their frustrations and joys, and they shared their experiences freely, supporting each other as best they could. As a deaf-bind person, Rhia is a rarity within a rare group. But everyone worked hard to include Rhia in the group. Whether she could understand their spoken words or not, she was still one of them. In time, Rhia warmed up and made two connections which could develop into friendships. Unfortunately they  live in different states, but if they can figure out how to stay in touch, the three could really help each other not feel so isolated.

Unfortunately I wasn’t able to attend many of the workshops on mitochondrial disease treatment and management, so I missed a lot of the information. But Rhia and I achieved our goal: connecting to other people with “mito” and understanding Rhia is not all alone. At times it was hard for me to step back from being mom and just facilitate communication. The stories people shared about their anger and grief coping with mitochondrial disease were heart wrenching. These kids should be enjoying high school and planning for college, not managing symptoms of a degenerative disease. Rhia said she hated her “lazy legs” and wished she could walk. She was tired of hurting herself all the time. The others nodded, understanding her anger. Reminding myself that I was here to support Rhia’s communication needs, I kept my tears in check.

At the end of the conference we were both exhausted and ready to be home. Two days later I’m still trying to regain my energy. The trip was challenging physically and emotionally, but worth it. We’ll definitely go again.

Thank you UMDF for providing this community and helping us cope with Mito. It’s not easy, but together, we can do it.