Some names have no meaning and some names mean absolutely everything to and about the bearer of the name. Our name falls into the latter category. Despite the more popular acronym, WTF! stands for Worth The Fight!

The origins of our name began with someone that I love to the moon and back, who was struggling with depression[3]. This person was cutting themselves and trying to mask their pain with drugs and alcohol, and attempted suicide before I realized what was going on with them.

Life isn’t easy for a Chiari family. From the moment that I was told that my head and neck pain wasn’t just pain, but something wrong with my brain, everything in our family changed. Everything became centered on me.

“Don’t stress mom out.” “Let mom rest.” “Can’t you see how much pain she’s in?”

Surgery came just weeks after diagnosis for me. It was in hopes that I could become the wife and mother that I once was, the wife and mother that my family so desperately needed me to be. Two years after decompression, I had a revision to fix a Hypertension[2] (IIH[8])" data-mobile-support="0" data-gt-translate-attributes='[{"attribute":"data-cmtooltip", "format":"html"}]' tabindex='0' role='link'>pseudomeningocele[1] (leak) with an SP shunt[6] (Subgaleo-peritoneal). It was about a month after this second brain surgery that I realized that there was much more going on in my house than I’d ever dreamed.

It was just after 2 am when there was a bone-chilling pounding on our front door. It was the kind of pounding that would awaken even the heaviest of sleepers – the kind of pounding that you’d never forget. My husband and I rushed to the front room, greeted by siren lights and multiple people shining flashlights into our windows. It was a firetruck, an ambulance, and the police. We opened the door and one of the officers informed us that they had reason to believe that our daughter had attempted suicide. Words could never express the feelings that I had as I ran desperately to her room unsure about what I’d find when I opened the door. She was alive, but incoherent and unaware of her surroundings. The officer intervened to assess her condition, asking if she was able to get up and come out of her room to talk. The one officer talked to her and another two pulled us aside to talk to us, as the paramedics stood by. Everything was surreal. How could I concentrate on hearing and answering questions when I didn’t even know if our daughter was going to live or die? The officer explained that she had called a friend after taking pills with wine or champagne. The friend told his mom and together they called the police while he continued talking with her. She had initially told this friend that she was in a park across town, so the police had been scouring the park looking for an overdosed teenage girl, and when they couldn’t find her, they pinged her cell phone which led them to our home just in the nick of time. My emotions raced. How could this be when she had come to our room earlier that night, looking tired, telling us how much she loved us, and that she was going to bed? (We should have known that something was wrong, but again, I had been so lost in my own world that I couldn’t see all that my children were going through at the time.) After assessing our daughter, the attempt was deemed “credible and in immediate need of emergency care,” and she was transported by ambulance to the county hospital emergency room.

My husband and I followed in our car. At the hospital, we were informed that she had taken multiple doses of my husband’s blood pressure medications and multiple doses of my opioids. The doctors said that the first concern was her heart, “if” she survived through the night. The next concern would be liver toxicity since the opioids all contained OTC[9])" data-mobile-support="0" data-gt-translate-attributes='[{"attribute":"data-cmtooltip", "format":"html"}]' tabindex='0' role='link'>Tylenol[7]. And that if she survived and made it through those steps and deemed stable, she would be held on a 5150 (Involuntary Psychiatric Hold). While we prayed at her side her blood pressure dropped down to the lower 50s/20s. We called for the doctor and they told us that there was nothing more they could do (it was too late to try to pump her stomach), she would either survive the night or wouldn’t. They told us to try to keep her awake, so we walked laps around the ER every single time her blood pressure dropped in an attempt to keep her awake. I don’t know how I held up my head that night, I was running on pure adrenaline at the thought of losing my only daughter. She survived the night and while we still had to wait for the toxicity reports on the liver tests, they allowed us to walk with her over to the Psychiatric Department of the hospital.

After a twenty-four-hour evaluation, our daughter was moved to a San Francisco hospital for a week-long intensive therapy program. We couldn’t visit her for the first few days. We were limited to scheduled phone conversations. At first, she just wanted us to go get her. It’s incredibly hard as a parent to be in a position where you legally cannot just take your child home. But we knew she needed help beyond what we could offer, and eventually, she realized that she needed that too.

Over the week, she worked on herself and we worked on creating a safer environment for her to come home to (they actually have a checklist when something like this happens involving a teen). I won’t go into all the details of how we tried to safeguard our home and family after realizing that Chiari hadn’t simply set out to steal just from me physically, but its attack extended to our entire family in every way. But there was a website that I happened by that really caught my attention.

I happened upon a story “To Write Love On Her Arms” by Jamie Tworkowski. It’s a story of a group of friends learning how to fiercely love a friend struggling with depression, addiction, self-injury, and suicide. They would write the word “LOVE” on her arms; the same arms that she had been carving the words, “FUCK UP” on. They figured that if she went to cut her arms again, she’d be reminded how greatly loved she really was.

Chronic[4] pain conditions (such as Ehlers-Danlos, Chiari Malformation, and the other comorbids[5]) can take a toll on us and how we think, how we see our future and the value that we see us having in this world. As we see ourselves become increasingly dependent on our family members, we see the burden that it places on them, and it hurts. We know that they say that we’re ‘not a burden,’ but we see it. When we hear those that we love, deny that a burden exists, we know they’re just saying that because they love us. “It’s nothing,” they tell us. IT’S NOT NOTHING! IT’S EVERYTHING! BECAUSE THEY MEAN EVERYTHING TO US! Perhaps it would be healthier to say that ‘we’re worth the burden,’ instead. No mother can deny that having a newborn baby is a burden of love. It’s absolutely exhausting, but we know that despite the burden, no matter how hard it gets, that little baby in our weary arms is absolutely worth the work! (Just like my daughter and all that she went through, there’s nothing that I wouldn’t have given to see her through it. She was worth it!” And as I continued with my fight, I realized that I was too and if we were going to fight to win this battle, we had to have very real conversations about my fight. My family had to be allowed [encouraged even] to admit that they get exhausted without fear of hurting me or offending me. It enabled us as a family to put the blame on my conditions so that it was Chiari that has robbed us, not me. It had robbed all of us, and we weren’t going to play games and put it on anything or anyone else. We were going to fight back as a family. So if anyone has a problem with our name or our acronym, I’m perfectly okay with letting that be THEIR PROBLEM.

If you have a family member struggling with EDS[10]/Chiari/Comorbids, whatever, you’re going to have to strengthen one another. WE HAVE TO STOP DENYING THE MAGNITUDE OF THE FIGHT, acknowledge it (every part of it), and fight back as a family, where every single person in that family KNOWS (beyond a shadow of a doubt) that they’re WORTHY! That even if we as a family must go to the ends of the earth together, it’s worth it, because each of us is WORTH THE FIGHT! And if someone forgets, write it on their arm to remind them!


This article is dedicated to my daughter, MyKaella, who taught me what it means to live knowing that we’re WTF! I’m so proud of the woman you’ve become and the woman that you helped me to become!

Terms definitions
1. pseudomeningocele. An abnormal collection of cerebrospinal fluid (CSF) that forms a pocket inside the cranium, just outside of the dura. Generally occurs as a complication of duraplasty (a common part of a Chiari Decompression surgery). While a small amount of fluid getting through the dura patch is normal after surgery, the body should absorb it and it should resolve within the first month or two. If it fails to reduce in size and resolve, that is a good indication that there is a cranial dura leak exists. A pseudomeningocele are most common amongst patients with an underlying connective tissue disorder (such as Ehlers-Danlos Syndromes) as their dural tissue is more fragile than that of the general population, they are more likely to have problems with the adherence of the patch, and they are more likely to have other comorbid conditions that can further complicate the healing process (such as Intracranial Hypertension, where the untreated high pressure can actually cause a cranial leak). Since the pseudomeningocele is inside the cranium, it can cause a "mass effect" that can raise intracranial pressure.
2. Hypertension ( Hypertension ) High blood pressure.  It is relatively normal to have high blood pressure from time to time.  It is when there is long-term force of high blood pressure against your artery walls that you need to be concerned.  Long-term high pressure can cause damage to the blood vessels and lead to heart attack, heart disease and stroke.  Symptoms of hypertension include headaches, shortness of breath and/or nosebleeds.  Unfortunately by the time these symptoms surface the hypertension may have reached a severe or life-threatening stage.  Fortunately, it is easily detected and if found quickly there are many medical treatments.
3. depression. A persistent depressed or saddened state in which people may lose interest in activities. Since Chiari Malformation involves the brain and often the pituitary gland (see Empty Sella Syndrome), depression should be looked at from a physiological/neurological point of view and not just a psychological perspective.
4. Chronic ( Chronic ) An illness, symptom, or condition that lasts a long duration (sometimes life long) and/or is constantly recurring.
5. Comorbid ( comorbids ) Conditions that co-occur with or without a known correlation.

 

INGREDIENTS:

Blueberry Balsamic Vinaigrette:

    • ½ cup fresh blueberries
    • ¼ cup aged balsamic vinegar
    • 2 teaspoons honey
    • ¼ cup avocado oil or light olive oil
    • ¼ tsp sea salt
    • ¼ tsp ground black pepper
    • ¼ teaspoon onion powder
    • ½ tablespoon whole grain Dijon mustard

Walnut-Crusted Chicken:

    • 2 cups walnuts
    • ½ tsp onion powder
    • ½ tsp garlic powder
    • ½ tsp sea salt
    • ½ tsp ground black pepper
    • 2 eggs, whisked with 1 T water
    • 2 large boneless, skinless chicken breasts
    • 2 TBSP olive, coconut or avocado oil

Salad:

    • 2 cups kale, washed, ribs removed, and roughly chopped
    • 4 cups 50/50 Spinach/Spring Mix salad greens
    • 8 radishes, thinly sliced
    • ½ cucumber, sliced into half moons
    • ¼ red onion, thinly sliced
    • ½ cup fresh blueberries
    • 1 medium carrot, shaved with a vegetable peeler or grated with a cheese grater
    • 1 medium avocado, sliced

DIRECTIONS:

In a blender, combine all dressing ingredients. Blend on high speed about 20 seconds, or until dressing is smooth and emulsified. Taste dressing and add more honey if it is too tart. The sweetness may vary depending upon the ripeness of your blueberries and the quality of your balsamic vinegar. Set aside at room temperature.

Place walnuts in a food processor and pulse until walnuts are ground, resembling course breadcrumbs. Avoid the temptation to leave the food processor on high, as this can result in a nut butter. Mix ground walnuts, onion and garlic powders, salt and pepper in a medium bowl or pie plate. In a separate medium bowl or pie plate, whisk together eggs and water.

Cut each chicken breast in half by thickness by laying the breast on a cutting board and pressing down on it with the palm of one hand. Using a chef’s knife in your other hand, hold the blade parallel to the cutting board and slice through the thickness of the breast, using a sawing motion. Repeat with the other chicken breast. You should now have four fairly thin chicken cutlets. Pat them dry with a paper towel.

Heat your chosen cooking oil on medium heat in a large, nonstick skillet. If your skillet is not large enough to accommodate all four cutlets, use half the oil at a time and work in two batches. Dip each cutlet in the egg wash, then the walnut mixture, pressing the walnuts onto the chicken. Place chicken in heated pan and cook approximately 3-4 minutes on each side, until walnut coating is deep golden brown and chicken is cooked through. Remove to a CLEAN cutting board to rest. Allow to rest and cool for five minutes, then cut into ½-inch slices.

While chicken is resting, assemble your salad, by combining all the ingredients except avocado in a large bowl. Divide the salad into four bowls and top each bowl with a sliced walnut-crusted chicken cutlet and ¼ of the sliced avocado. Drizzle prepared vinaigrette over chicken and salad and serve immediately. Leftover dressing can be stored in the refrigerator, but will be best if you let it return to room temperature before serving.

Terms definitions
1. pseudomeningocele. An abnormal collection of cerebrospinal fluid (CSF) that forms a pocket inside the cranium, just outside of the dura. Generally occurs as a complication of duraplasty (a common part of a Chiari Decompression surgery). While a small amount of fluid getting through the dura patch is normal after surgery, the body should absorb it and it should resolve within the first month or two. If it fails to reduce in size and resolve, that is a good indication that there is a cranial dura leak exists. A pseudomeningocele are most common amongst patients with an underlying connective tissue disorder (such as Ehlers-Danlos Syndromes) as their dural tissue is more fragile than that of the general population, they are more likely to have problems with the adherence of the patch, and they are more likely to have other comorbid conditions that can further complicate the healing process (such as Intracranial Hypertension, where the untreated high pressure can actually cause a cranial leak). Since the pseudomeningocele is inside the cranium, it can cause a "mass effect" that can raise intracranial pressure.
2. Hypertension ( Hypertension ) High blood pressure.  It is relatively normal to have high blood pressure from time to time.  It is when there is long-term force of high blood pressure against your artery walls that you need to be concerned.  Long-term high pressure can cause damage to the blood vessels and lead to heart attack, heart disease and stroke.  Symptoms of hypertension include headaches, shortness of breath and/or nosebleeds.  Unfortunately by the time these symptoms surface the hypertension may have reached a severe or life-threatening stage.  Fortunately, it is easily detected and if found quickly there are many medical treatments.
3. depression. A persistent depressed or saddened state in which people may lose interest in activities. Since Chiari Malformation involves the brain and often the pituitary gland (see Empty Sella Syndrome), depression should be looked at from a physiological/neurological point of view and not just a psychological perspective.
4. Chronic ( Chronic ) An illness, symptom, or condition that lasts a long duration (sometimes life long) and/or is constantly recurring.
5. Comorbid ( comorbids ) Conditions that co-occur with or without a known correlation.
Read More

After years of having our symptoms dismissed, having our pleas for help and understanding seemingly fall on deaf ears by our doctors (and many times our friends and family as well), it can be a relief to finally have a name for what has gone so horribly wrong with us. The relief is short-lived however, as we begin to realize the full scope of all that is really wrong with us. Although surgery can be extremely successful for some, many of us are left with some degree of symptoms or complications to deal with. For those of us who also have a connective tissue[13] disorder, such as Ehlers-Danlos Syndrome (EDS), the issues with our tissues can seem endless. The thought of “getting healthier” can seem like a daunting task. We do not have control over every aspect of our health, or every aspect of our fight, but we are not powerless! We do have control over some lifestyle choices, that can help improve our day-to-day lives.

MAINTAIN A POSITIVE ATTITUDE:
The single most important item within our control is our attitude! We don’t have to ignore our reality or turn a blind eye to the negative aspects of our conditions to have a positive attitude. We can choose to frame things in a positive light. For example, if I am no longer able to walk as far as I could this time last year, I can look upon that situation with an air of defeat… or I can remind myself that I was also unable to walk that far three years ago, but with determination, with time I made progress! It may be unfair that I must start over again, but I am worth every ounce of effort that it takes to do so. I can acknowledge the unfairness, and then choose to focus on making progress towards my goal. A positive attitude is not going to will Chiari or EDS away, but it can improve our experience of living with these conditions.

CHOOSING FOODS WITH YOU IN MIND:
With connective tissue disorders, and the myriad of effects they can have on our bodies, eating healthfully can feel like walking through a minefield. Mast cell issues can cause sudden or intermittent allergic reactions to a wide variety of foods. Dysautonomia[14] can require us to consume large amounts of salt (and still may end in nausea and vomiting). We are more prone to gastroparesis[15], gastric dumping, Irritable Bowel Syndrome (IBS), and other gastrointestinal problems that limit our food choices. Despite all these challenges, most of us can make food choices with optimum health in mind. Many EDS experts recommend eating whole, nutritionally dense foods, and taking supplements to help mitigate the vitamin and mineral deficiencies many of us are prone to, due to malabsorption. If inflammation is an issue, we can avoid dairy, sugars, refined flour, fried foods, and replace them with foods that are known to reduce inflammation, such as: salmon, blueberries, beets, broccoli, spinach, and foods cooked in turmeric, ginger, garlic, and olive oil. Most importantly, we can educate ourselves on our various conditions and what the experts on those conditions recommend, discuss this information with our own doctors and develop an individualized plan for ourselves, and apply this knowledge to our everyday life. Knowledge is key with conditions such as ours! While eating well is not going to shrink our cerebellar tonsils[12] or cause our bodies to make collagen[16] differently, it can help improve energy levels, and reduce pain and other symptoms.

MOVING IS ESSENTIAL TO MOBILITY:
Despite the pain and the fear, we can choose to move every day and strengthen our bodies as much as possible. Deconditioning is a real issue for many of us who have had such debilitating pain and other symptoms, that even after a successful decompression surgery[11], we may find ourselves unable to function normally again. And while we may never be 100% again, we usually can gradually improve our strength and endurance through a good physical therapy and exercise program. Experts agree that strong muscles help reduce many of subluxations and soft tissue injuries that are common to us. It isn’t always easy to find the motivation to get up and take a walk or to do those exercises your physical therapist assigns, but we must remind ourselves that we are worth the effort, and that even the very slightest bit of progress, is still progress. As the adage goes, “A journey of a thousand miles begins with one step.”

We encourage you to fight for better medical care, for more research, for doctors and loved ones to listen to you. But with that also comes a responsibility to do everything you can to take the best care of yourself possible. To follow your doctor’s recommendations (once you find a good one), to eat well, and to stay as active as you possibly can. But you don’t have to go this alone! If no other positive thing comes out of being diagnosed with Chiari or any of its comorbidities, we do promise you this; the Chiari community is full of amazing, inspiring, loving, encouraging people who will stand in your corner and cheer you on through all your challenges, even if no one else will. And we here at Chiari Bridges will be there along the way with tips and advice on living your best life possible with Chiari and all its ugly friends. Remember, pain is inevitable, but suffering is optional!

 

[wpedon id=”4396″ align=”center”]

Terms definitions
1. pseudomeningocele. An abnormal collection of cerebrospinal fluid (CSF) that forms a pocket inside the cranium, just outside of the dura. Generally occurs as a complication of duraplasty (a common part of a Chiari Decompression surgery). While a small amount of fluid getting through the dura patch is normal after surgery, the body should absorb it and it should resolve within the first month or two. If it fails to reduce in size and resolve, that is a good indication that there is a cranial dura leak exists. A pseudomeningocele are most common amongst patients with an underlying connective tissue disorder (such as Ehlers-Danlos Syndromes) as their dural tissue is more fragile than that of the general population, they are more likely to have problems with the adherence of the patch, and they are more likely to have other comorbid conditions that can further complicate the healing process (such as Intracranial Hypertension, where the untreated high pressure can actually cause a cranial leak). Since the pseudomeningocele is inside the cranium, it can cause a "mass effect" that can raise intracranial pressure.
2. Hypertension ( Hypertension ) High blood pressure.  It is relatively normal to have high blood pressure from time to time.  It is when there is long-term force of high blood pressure against your artery walls that you need to be concerned.  Long-term high pressure can cause damage to the blood vessels and lead to heart attack, heart disease and stroke.  Symptoms of hypertension include headaches, shortness of breath and/or nosebleeds.  Unfortunately by the time these symptoms surface the hypertension may have reached a severe or life-threatening stage.  Fortunately, it is easily detected and if found quickly there are many medical treatments.
3. depression. A persistent depressed or saddened state in which people may lose interest in activities. Since Chiari Malformation involves the brain and often the pituitary gland (see Empty Sella Syndrome), depression should be looked at from a physiological/neurological point of view and not just a psychological perspective.
4. Chronic ( Chronic ) An illness, symptom, or condition that lasts a long duration (sometimes life long) and/or is constantly recurring.
5. Comorbid ( comorbids ) Conditions that co-occur with or without a known correlation.
Chiaribridges

FREE
VIEW