Gina Baker

@gbaker318 | contributor
I became totally disabled in 1992 at the age of 33 when I was diagnosed with Nonclassical Congenital Adrenal Hyperplasia. In 2000 I was diagnosed with mitochondrial myopathy/MELAS. Both conditions cause profound debilitating fatigue and muscle weakness. The mitochondrial disease causes energy depletion on a cellular level leading to organ and body system failures. My breathing muscles and heart are affected by it. My adrenal disease causes profound fatigue, adrenal insufficiency, and occasional, adrenal crises, which is life threatening. Keeping the right steroid balance is very difficult.
Gina Baker

Wishing You Could Take a Break From Your Chronic Illnesses

It would be so nice to get a break from my exhaustion and pain. I would love a vacation, a day off, or even a little time to myself to forget about it. But wherever I go, my pain and fatigue goes. In the words of indomitably sassy “Designing Women” character Suzanne Sugarbaker, “Wherever you go, there you are.” She was talking about “getting away” as a solution for your struggles, and I can relate to what she said. My symptoms never go away. It would be great if having a meltdown or a tantrum helped me or changed anything, but it doesn’t. Meltdowns just use energy I don’t have and intensify my headaches, and crying just gives me sinusitis. I can’t even be too excited or enthusiastic when I can get enough energy or adrenaline because that just burns right through my energy too and leaves me feeling weak, shaky, and wobbly. I live on a plane of imposed mediocrity. Though I am responsible, orderly, and stable, it is not in my nature to live so dispassionately and inexpressively. Yet few have seen the passionate, spontaneous side of me. I hate inactivity, unproductiveness, and indecisiveness. I’m a firm believer in “lead, follow, or do something.” The thing about multi-condition, energy-depleting chronic illness is that it cannot always be “managed,” and it has changed who I am. It may not have changed me at my core, but it has definitely changed my ability to express and demonstrate who I am. Far too many days, it so overwhelming masks who I am that even I can’t identify with my true self. There is a well-defined delineation between my former self and my present self because of my chronic illnesses. I fully comprehend that life changes — and we all change. The exponential acceleration of that concept in the form of life-altering, debilitating chronic illness allows me no time for adjustment or acceptance. It is a steep learning curve that takes no prisoners, so I either sink or swim. Much of my time early on in my illness was spent floundering and sometimes going under. Now, though, I mostly tread water. Occasionally, I get to float and rest awhile when I experience glimpses of my true self for brief periods. In these moments, I remember that “still I rise.” Otherwise, I would surely drown.

Community Voices

Your happiness is up to you

<p>Your happiness is up to you</p>
57 people are talking about this
Gina Baker

Wishing You Could Take a Break From Your Chronic Illnesses

It would be so nice to get a break from my exhaustion and pain. I would love a vacation, a day off, or even a little time to myself to forget about it. But wherever I go, my pain and fatigue goes. In the words of indomitably sassy “Designing Women” character Suzanne Sugarbaker, “Wherever you go, there you are.” She was talking about “getting away” as a solution for your struggles, and I can relate to what she said. My symptoms never go away. It would be great if having a meltdown or a tantrum helped me or changed anything, but it doesn’t. Meltdowns just use energy I don’t have and intensify my headaches, and crying just gives me sinusitis. I can’t even be too excited or enthusiastic when I can get enough energy or adrenaline because that just burns right through my energy too and leaves me feeling weak, shaky, and wobbly. I live on a plane of imposed mediocrity. Though I am responsible, orderly, and stable, it is not in my nature to live so dispassionately and inexpressively. Yet few have seen the passionate, spontaneous side of me. I hate inactivity, unproductiveness, and indecisiveness. I’m a firm believer in “lead, follow, or do something.” The thing about multi-condition, energy-depleting chronic illness is that it cannot always be “managed,” and it has changed who I am. It may not have changed me at my core, but it has definitely changed my ability to express and demonstrate who I am. Far too many days, it so overwhelming masks who I am that even I can’t identify with my true self. There is a well-defined delineation between my former self and my present self because of my chronic illnesses. I fully comprehend that life changes — and we all change. The exponential acceleration of that concept in the form of life-altering, debilitating chronic illness allows me no time for adjustment or acceptance. It is a steep learning curve that takes no prisoners, so I either sink or swim. Much of my time early on in my illness was spent floundering and sometimes going under. Now, though, I mostly tread water. Occasionally, I get to float and rest awhile when I experience glimpses of my true self for brief periods. In these moments, I remember that “still I rise.” Otherwise, I would surely drown.

Gina Baker

Wishing You Could Take a Break From Your Chronic Illnesses

It would be so nice to get a break from my exhaustion and pain. I would love a vacation, a day off, or even a little time to myself to forget about it. But wherever I go, my pain and fatigue goes. In the words of indomitably sassy “Designing Women” character Suzanne Sugarbaker, “Wherever you go, there you are.” She was talking about “getting away” as a solution for your struggles, and I can relate to what she said. My symptoms never go away. It would be great if having a meltdown or a tantrum helped me or changed anything, but it doesn’t. Meltdowns just use energy I don’t have and intensify my headaches, and crying just gives me sinusitis. I can’t even be too excited or enthusiastic when I can get enough energy or adrenaline because that just burns right through my energy too and leaves me feeling weak, shaky, and wobbly. I live on a plane of imposed mediocrity. Though I am responsible, orderly, and stable, it is not in my nature to live so dispassionately and inexpressively. Yet few have seen the passionate, spontaneous side of me. I hate inactivity, unproductiveness, and indecisiveness. I’m a firm believer in “lead, follow, or do something.” The thing about multi-condition, energy-depleting chronic illness is that it cannot always be “managed,” and it has changed who I am. It may not have changed me at my core, but it has definitely changed my ability to express and demonstrate who I am. Far too many days, it so overwhelming masks who I am that even I can’t identify with my true self. There is a well-defined delineation between my former self and my present self because of my chronic illnesses. I fully comprehend that life changes — and we all change. The exponential acceleration of that concept in the form of life-altering, debilitating chronic illness allows me no time for adjustment or acceptance. It is a steep learning curve that takes no prisoners, so I either sink or swim. Much of my time early on in my illness was spent floundering and sometimes going under. Now, though, I mostly tread water. Occasionally, I get to float and rest awhile when I experience glimpses of my true self for brief periods. In these moments, I remember that “still I rise.” Otherwise, I would surely drown.

Winslow E. Dixon

Up-dosing Your Cortisol Levels With Adrenal Disease

In a “normal” person, during situations of emotional or physical stress, their body often releases more cortisol. The excitement from a happy event, the sadness from a death of a loved one or the strain from exercising are examples of things that would cause the body to release more cortisol. In an adrenal insufficient person, this does not happen. They often have to artificially manage their cortisol. Their personal cortisol needs may differ from day-to-day. For many, no two days are the same and it is a struggle to regulate proper cortisol levels. Most of us “adrenal disease veterans” know this. We know we have to constantly be vigilant of our cortisol levels. Yet, most of us still struggle when deciding to up-dose. We typically think things like: Do I really need more cortisol? I can push through this…. I’ll be fine…. Some of our endocrinologists scold us for up-dosing or relying on a higher basal cortisol dose. All these things flood our minds when we are trying to manage our adrenals artificially. Unlike diabetics who can check their blood sugar, there is no cortisol meter for adrenal patients. We have to constantly be aware of our levels, which can present with various signs of “lows.” Everyone is different. How do you know when you need to up-dose? How do you know when your cortisol replacement is correct for you? I had to learn a hard lesson recently about the true importance of up-dosing with adrenal insufficiency. I have adrenal disease, endometriosis, medullary sponge kidney disease and I am currently on the cortisol pump. This past weekend, I was a bridesmaid in my baby brother’s wedding. The wedding required me to travel, stay away from home and was very physically taxing. The wedding was on a Saturday and we traveled to the destination on a Thursday. The weekend was filled with pre-wedding activities. It was a massive struggle with my health. The traveling alone was taxing. Then, there was the rehearsal dinner, entertaining guests and having to sleep on a couch. I started to develop low symptoms, which for me are unbearable cluster migraines that usually result in temporary blindness. A board member of a foundation and fellow adrenal disease patient texted to check on me. I told her my migraines had come with a vengeance. “Are you sure you are replaced enough? Sounds like you’re low,” she said. “Yeah, I’ve bolused a few times here and there,” I responded. (My bolusing was 2-4mg here and there, which I now realized was like nailing jello to a tree with all the activity, heat and symptoms I was enduring.) I did all my pre-wedding duties and was exhausted. When I woke up the day of the wedding, my migraine was even worse. But it didn’t matter. I had to do what I had to do! I was determined I was going to be in my baby brother’s wedding. I determined I was stronger than this disease. Mind over matter was going to work for me that day! So, I pushed through. My board member friend called me. “Winslow, I just wanted to call and make sure you were preparing for today. Have you bolused? Did you adjust a temp basal increase?” she asked. I had never before done a temp basal increase. I always think I can just endure whatever I force myself through. I explained to her I’d bolused here and there and she convinced me to set my rates to a 200% temp basal increase. I hesitantly did it, mainly because the migraine was at an unbearable point and I hoped it would quell the awful pain. My pump rates were set higher and I continued to get ready for the wedding. The migraine didn’t stop but I pushed through anyhow. The first duty of the day was to take pictures before the wedding. Little did I know, these pictures would be done fully dressed in the ball gown bridesmaids dress, in the Florida heat with tons of walking around to different areas outside. (Here is a picture during the ceremony. As you can see, the dresses were not made for the heat of Florida in the summer!) We started taking pictures at 11:30 a.m. and didn’t get done until 1:30 p.m. I had spent two hours in the heat. Being salt wasting, I struggled to keep control of my consciousness. My head was killing me. All I wanted was to lay down in a cool room, eat an entire shaker of salt and drink cold water. But the wedding started at 2:00 p.m. I had to push through. I had to make it. I had to smile and look like I wasn’t as absolutely miserable as I truly was. I didn’t have any water so five minutes before the wedding, I choked down/dry swallowed a migraine pill — and hoped it would quell the unbearable throbbing going on in my head. I was in a corseted dress and couldn’t get to my pump. I felt myself struggling to stay conscious. Even with the temp increase, I was getting dangerously low. I quickly asked my mother to access my pump and give me a bolus. This was a challenge because it was hooked to my Spanx in the back of the dress. My mom had never before touched the pump, so explaining how to bolus was a challenge, especially since we were in a hurry. She bolused the max my pump would go at 5units (mg). I quickly rushed into the wedding lineup and smiled the best I could. During the wedding, I stood the whole time. My headache only got worse but I kept smiling. Thoughts of my stubborn personality mindset swirled through my head: “I will not ruin this day for Joshua and Rachael.”“I can make it through this.”“I will not throw up.”“I am stronger than my disease.”“I will not let anyone see me collapse.”“I’m stronger than this pain.”“Just breathe, Winslow. Just breathe.”“You are strong enough to endure this suffering.”“Smile. Don’t ruin this for your brother.” I made it through the wedding. They said, “ I do” and I wanted to say goodbye and go lay down. “I’ll just sneak off and miss the reception,” I thought. No. We had pictures to take after the wedding. After that, I was informed we would be announced into the reception as the bridal party. I realized sneaking away wasn’t an option. My assigned seat was right next to the bride at the head table. I felt my cortisol dropping. After I was announced into the reception, I grabbed my plate, acted like I was going to get food and just kept on walking back into the church. I started losing my eyesight, getting tunnel vision and realized I was heading into crisis. I wasn’t going to ruin this day for my brother. I refused to let everyone witness the train wreck my health is. I struggled to walk back into the room the bridesmaids had gotten ready in, turned the lights off and collapsed in the floor. “How am I low with a 200% increase?!” I wondered. I suddenly got a strong wave of nausea and started vomiting. Crisis. I knew I was headed straight into a crisis. I texted a friend of mine with my fading eyesight and hoped they’d alert my family, which they did not. The bride’s sister found me lying in the floor of the bridal suite room. My intention was to slip away and get it together enough to return to the reception. But I was too low and ended up vomiting and passing out. By the time my dad got to me, I had lost my eyesight and was fading in and out of consciousness. He took me back to the house we were staying in. I laid down and tried to keep it together. I knew I needed more cortisol. My good friends from home had come to the wedding and immediately came to my aid so my dad could return to the reception. My best friend, her sister and her mom helped me get out of my dress, administered more cortisol and gave me electrolytes. Throughout the whole wedding, I had 50mg of cortisol. My normal dose is 37mg daily. Though I had a 200% increase, it was not enough for all that activity, physical and emotional stress. Had the board member not called me and made me increase my basal rates, I’m quite sure I’d have suffered a major crisis and may not have survived. My choices were either up-dose or collapse. The lessons I learned: 1.  There is no magic number for cortisol. If you need it, you need it! 2.  Do not be afraid to up-dose. 3.  Give your body what it needs! 4.  Artificially managing a body system is complicated and needs careful attention. 5.  It’s better safe than sorry. Take a page from my book and up-dose before you crash. This is your life, your disease and your health. Take care of yourself. Give yourself enough cortisol. Wishing you comfort and cortisol. And if you are in need of resources to manage adrenal disease, please don’t hesitate to contact the at Adrenal Alternatives Foundation.

Community Voices

Imagine your condition as a Rubik's cube, how complex would yours be?

<p>Imagine your condition as a Rubik's cube, how complex would yours be?</p>
14 people are talking about this
Community Voices

Spring Fever/Real Life Envy

I've been having a bad case of "real life" envy with our sunny, warm early days of Spring. Spring is here. I'm seeing people's activities on these first sunny, warm days - starting work on projects, Spring break trip plans . . . Honestly, it breaks my heart. Not because of others, but because nothing changes for me. It doesn't matter what Season it is. It's all the same inside. There's nothing in my future except more decline. I've managed a short sit out on the deck on our sunny days when the wind isn't so brisk. I enjoy the sun, but two things make it wistful for me. First, just feeling so weak and ill I can barely sit there so it's just a tiny consolation not to have let the opportunity to get outside for a few minutes totally escape me. Second, it's always longing for more. I want to feel well and be able to enjoy Spring and do things that people do in Spring. I love Spring, but it doesn't love me. I stay sick with seasonal allergies all Spring even with meds and mask wearing. Then by mid June, if not before, it will be too hot for me. So I want some Spring enjoyment now. #ChronicFatigue #mitochondrialdisease #AdrenalInsufficiency

Community Voices

The industrialist

<p>The industrialist</p>
36 people are talking about this
Community Voices

The industrialist

<p>The industrialist</p>
36 people are talking about this
Gina Baker

Remember People Like Me on Rare Disease Day -- and Every Day

The 300 million people living with rare diseases seldom receive appropriate medical treatment. Unlike common chronic diseases for which there are often established and constantly evolving treatments and interventions, those with rare diseases largely struggle to cope with symptoms on their own. This has a devastating effect not only physically, but also, emotionally. Many are often never accurately diagnosed despite dozens of failed attempts and countless consultations with doctors and specialists. When no empirical data for our symptoms is found, we are given psychosomatic diagnoses of depression, anxiety, and other mental health disorders. Ultimately, doctors give up on us and worse, often blame us for our own condition. Even making accusations of self-inflicted illness such as Munchausen syndrome or labeling us with factitious disorder or conversion disorder. I want doctors and medical professionals to know that many of us are living poor quality, marginalized lives due to the limitations of our health and because of a lack of efficacious treatments. We are debilitated, declining, and progressively dying, often living in isolation and poverty without resources and social support. I want people to know that those of us living with rare diseases are strong, courageous, resourceful, and resilient. We have no choice but to be. Otherwise, we would surely be dead. We must dig deeper, try harder, and persist longer for minimal results than most people will ever be called upon to even in pursuit of praiseworthy goals. If our efforts were commensurate with accomplishments, we would be the movers and the shakers of the world. It doesn’t have to be this way. Science and technology are advancing by leaps and bounds. The swiftness with which Covid 19 vaccines were developed shows what can be accomplished with an urgent cooperative effort. There must be a return to an altruistic medical ethic. Those suffering the most must have equity of access to the scientific advancements that have already been made. Every person who has a complicated unsolved medical history should routinely be seen by a geneticist and have DNA studies done with all variants identified and put into a universal data bank that matches variants and symptoms. Existing treatments for known diseases must be expanded for more uses. We must have compassionate use of treatments and “the right to try” treatments that have shown promise. In short, the medical establishment must not give up on us or ignore us. We have a right to the best quality of life we can have. In the 21st century, it is incomprehensible that millions with so much potential and such a strong desire to live productive lives are languishing.