nurse caring for a patient

Thank You to the Kind Nurse Who Cared for Me After My Surgery


Waking up from the decompression surgery was a very unique experience for me. First off, my head was killing me. I literally thought it might implode. It was so surreal. I remember my first thought being “I made it, I am alive.” Very quickly followed by “Oww, nurse!” Then I saw my husband’s sweet face. I watched as concern faded into relief and then to that soft smile he uses when he knows I need to see his face.

For a moment, I forgot everything else. A very, very brief moment. Then the pain came flooding in. Thank God my angel nurse came back with something very quickly. I kept trying to sit up, but after a posterior fossa decompression surgery that helps to correct Chiari malformation, I was not allowed any higher than 20 degrees. The nurse had to keep gently reminding me of that over the next several hours as I was in and out of it.

I would wake up and the pain would come screaming to the surface. One press of the button and out I would go again. When they first brought the PCA pump in they told me I could press it every six minutes. Which would equal 10 clicks an hour. After the first hour, I remember them coming in and saying I hit it 27 times. Honestly at that point all I could do was halfheartedly giggle and ask how do I know when six minutes is? “Ma’am, the light turns green.” Ohh. It was all good from then on.

Sometime in the middle of the night, my sweet angel of a nurse, Angie, came in to take me off to a CT scan. At this point I was feeling pretty good and talkative and we talked about how hard it is to live with chronic pain. Turns out she herself had been down that road. Her compassion to listen to my story of not being believed and dismissed was so moving, I am pretty sure I was crying. Anesthesia makes me extra emotional. I told her how advocating and writing about awareness and my struggle had been my saving grace. She jokingly said, “Remember me in your next piece.”

Dear Angie, I will remember you every time I start to lose hope again in the medical community. Thank you for that. Throughout the rest of my fancy hospital getaway, she was so attentive of my needs and my wants. Mostly food was in the want category.

I literally had to get up to go to the bathroom every hour and she came in every time, joking about how on time my bladder was, and helped me to the restroom. I am not an easy patient, I hate to be still and having to depend on others, but none of that seemed to affect her. She was as kind to me when I was “being good” as when I was “being difficult.”

As someone who struggles with a barrage of chronic illnesses, I have become guarded and distrustful of the medical community. I try not to be, but my experiences warrant those feelings. I am become accustomed to calling out issues with my patient advocates and seeing them resolved so others do not have to feel this way. However, there are times to give praise as well. This nurse deserved praise. Her kindness and compassion made one of my most difficult surgery experiences easier. Even though I could see she herself was tired, she never faltered. She always gave 100 percent to her patient. She also gave of her own heart by connecting to someone who had lost a lot of faith in the medical community that was treating her.

Right now, a friend of mine has a friend who is in bad shape in that same unit. I was able to tell her of how great the nurses are in that unit and that her friend was in the best hands right now. How amazing is that, that the kindness of one nurse has trickled down to people she does not even know? So, I hope one day, Angie, you read this and know you make a difference every day. Thank you.

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Thinkstock photo via Jochen Sands.

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To My Chiari Malformation on Its Sixth Birthday


Dear Chiari malformation,

You came into my life six years ago now, when I suddenly developed a constant pain in the back of my head. I was a freshman in high school, and coincidentally it was Chiari Malformation Awareness Month, but I didn’t know that – I didn’t even know how to spell Chiari at the time. I figured you were just a sign I needed to drink more water, or maybe you were a tension headache, or just allergies of some sort. Oh, how silly I was to think that.

 

You started to introduce me to neurologists, nurses, ER doctors, pain management specialists, eye doctors of all kinds, orthopedists and so many others – people I never thought I would meet at such a young age. We didn’t just meet people in Virginia either – you introduced me to doctors in New York, North Carolina, Ohio and Maryland too. No one quite knew what to make of you, and assumed you didn’t exist for the longest time. People called you many inaccurate names including celiac, functional disorder, conversion disorder, idiopathic migraines, epilepsy or just said you’re “all in my head.” That’s the thing about you though – you are outside of my head. That’s your most identifying trait on a MRI scan. While we suspected you were Chiari malformation for a long time, it wasn’t until a month after your fourth birthday that your identity was confirmed by my neurologist.

You took me away from places such as concerts, movies, restaurants and stores, instead insisting on taking me to places I never had been before. I sat in many empty hallways, lobbies and even staircases because you would suddenly demand your presence be known, usually because of flashing lights. I’ve learned how to handle large amounts of pain without letting anyone else know how bad it is, and I really do know how to make a quick exit because of you.

There have been many people over the years who saw us as one, and I’m not going to lie – that really took a toll on me. Teachers and administrators would exclude me from many opportunities because they feared you, or they thought you were brain cancer. Fellow students often avoided me, and I had almost no friends outside of band. My family had to cancel many trips and change plans because of you too – no more traveling for long car rides or going to fun events. People would meet you and wonder why you were with me, of all people. It just didn’t seem fair.

But you did not take everything from me in the end. I remember when I came back to school after you put me in the hospital the first time, a kind person named Ellen more or less adopted me, calling me their shadow. Another close friend named Shelby renewed her vow that I would always be her best friend, even if you were now part of our friendship. Over the years, I have built up an amazing support network consisting of the best friends anyone could ask for (both online and in real life), a wonderful family, supportive teachers and advisors and the best neurologist, ophthalmologist and primary care doctor ever. Whenever I feel like you are taking over, this support network helps remind me that you do not define me, and I am not my condition – or, as my friend puts it, I’m not VeroniChiari. You may have been with me through three schools, two moves, several missed band concerts, ER visits and countless late nights, but you have not broken me. And you never will.

So, happy sixth birthday, Chiari malformation. I hope I don’t have to celebrate many more birthdays with you, and that a cure may be found in the future for me and the many other Chiari warriors.

This post originally appeared on Veroniiiica.

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Thinkstock photo via RuthBlack.

teacher's desk with lesson plans

Battling Uncertainty as a Chronically Ill Teacher


This past April, I was admitted to the hospital for pain and nausea control for the third time of the school year. After meeting with several physicians and surgeons, I was finally diagnosed with and had surgery for a Chiari malformation (type 1). While it was an incredibly difficult decision to leave my kids in the hands of a long-term substitute, I knew I had to take care of myself in order to be able to take care of my students.

 

A couple of weeks ago, approximately half of our senior class came back as we went on a senior leadership retreat, which helps our students transition to the leadership roles they will take on during their final year of high school. I had the privilege of chaperoning this trip, and was able to reunite with many of the students I had to leave in April. It felt so good to be back with my kids; I know they were all incredibly concerned about my health, and it was important to me to show them I was back.

In the middle of the retreat, one of my students, who will be taking my second-year AP course this year, looked at me and asked, “Ms. Fagan, the surgery fixed your brain, right? So that means you won’t be out more this upcoming year, right?”

I looked him in the eye and said, “Yes,” and then had to turn away and hold back tears.

See, I want that answer to be yes, 100 percent certain. I hope and pray to God every day that the answer is truly yes. But I don’t know if that will actually be the answer to that question.

Yes, I had a surgery to fix my Chiari malformation. Yes, knock on wood, it has been successful in reducing my symptoms thus far. But having three chronic illnesses – Chiari malformation, gastroparesis and adrenal insufficiency, it’s not as simple as brain surgery to “fix” everything.

And nothing scares me more than not knowing whether I’ll go into an adrenal crisis or have a GP flare that will land me in the hospital.

Because nothing scares me more than the possibility of abandoning my students again.

Everyone who works while battling chronic illness worries about meeting job expectations, about disappointing supervisors, about getting fired for missing too much work. But being a teacher with a chronic illness (or multiple chronic illnesses) adds an extra complexity to the situation.

On the surface, the worries are things like, “What if I go into a flare when it’s time to submit report card grades?” or “Do I have enough sub plans to get me through a hospitalization?” or “Will the sub finish preparing my students well enough for the AP exam in May?”

But those pale in comparison to the worries I feel toward my students. From the moment these kids first walk into my classroom, which will be tomorrow, for many of them, they become “my kids.” I care about every single one of their stories. The worries quickly become things like “Will the students whom I’ve developed a strong rapport with feel like they have another adult in the building they can trust and lean on?,” “Will the substitute know [student] needs tough love in order to work to [her/his] potential?,” “Will my student who is dealing the death of a sibling fall through the cracks because I can’t follow up on how he’s doing in all of his classes?” and “Will my student who has dealt with three teachers leaving this year due to unforeseen circumstances be able to handle all the change he’s experienced?”

I feel immensely privileged to be a part of a profession that has so much responsibility, because with that comes an incredibly satisfying feeling. Working with a chronic illness is difficult, and it’s because of my students that I am able to get out of bed on some of the harder days.

teacher's desk with lesson plans

I know there may be a day where the answer to “That means you won’t be out more this upcoming year, right?” becomes a definitive “no.” I know if, or when, that day comes, it will be unavoidable. The struggles teachers face never really become easier, and the same holds true for teachers with chronic illnesses. Over time, however, you become more prepared to deal with the situations. So I’ll prepare as best I can. I’ll decorate my classroom to ensure it’s welcoming, I’ll walk into school every day with a smile on my face, ready to foster those relationships, and will be ready to work diligently in the months ahead, so that, if that day comes, my students are well prepared for any transitions that may be thrown at them.

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Silhouette of woman holding finger on her lips.

How Being an Empath With a Chronic Illness Has Made Me a Liar


I’m an empath.

In general, I consider my ability to be finely tuned in to others’ mental or emotional states nothing short of a super power. I can scan a room and know how to interact with everyone in it. It doesn’t take me long to find out what makes another person tick, and then to know how to keep them ticking. Empaths also tend to actually feel others’ emotions, both joyful and sorrowful, as we would our own. It makes us a powerfully compassionate and generally likable bevy. But as either Voltaire or Spiderman is known for saying, “With great power, comes great responsibility.”

Never have I felt this “responsibility” more than in the last few years.

In late 2015 I was diagnosed with Chiari, more clinically known as an Arnold Chiari malformation type 1. Without delving into all of the symptoms, Chiari is characterized by painful trigger points and muscle spasms, dizziness, tinnitus, fatigue, nausea, intermittent weakness and/or paralysis, just to name a few of the symptoms. It is a serious and chronic condition that is rarely diagnosed, poorly understood, and has no real treatment other than to try and manage symptoms. Emphasis on the word “try.”

Because I am both an empath and a Chiari warrior, I often find myself in tricky situations where I have to choose between my natural tendency to protect the feelings of others… or lie. More often than not, I choose the latter:

1. I lie to my dad when he asks if I’m still on “all that medication” because I know he worries about the long-term effects of my many prescriptions and their dosages.

2. I lie to my aunt when she asks if the brain surgery I had has “fixed” the problem, because I know she so desperately wants me to feel better.

3. I lie to my grandma when she asks if I’m still getting those headaches all the time, because I know she’s been praying her heart out for me.

4. I lie to my coworkers when they ask if I’m feeling OK, because I don’t want them to feel as if they should be taking on responsibilities that belong to me.

5. I lie to my massage therapist because I can tell how badly she wants to relieve my pain and muscle spasticity.

6. I lie to my doctor when she asks if I want to up the dosages on the medication that seeks to manage my pain, because I don’t want to seem like a pill popper.

7. I lie about my reasons for starting Christmas shopping in June, saying it’s because I like to be organized when really, it’s because I live in constant fear that a lengthy flare-up will make it impossible for me to do it during the actual Christmas shopping season.

8. I lie a lot by omission to almost everyone I know because I’m afraid of coming off as weak, a complainer, a drama queen, a party-pooper, self-centered, and assume that they don’t want to hear about my issues because they have plenty of their own.

9. I lie about how exhausting it can be just to get through the day because I’m afraid of my own reaction if I hear, “Yeah, I’m tired too,” one more time.

10. I lie about my reasons for declining to commit to social invitations because I live in constant fear that when the time arrives, a flare-up will force me to cancel anyway.

Since being diagnosed, I have experienced a shift in how I see the world, and my place in the world. I regularly have to remind myself and those around me that my life isn’t over, it’s just different.

I’m not a dishonest person, but I lie. Similarly, I’m not a victim, but I suffer. I lie because I choose not to transfer the burden of my suffering to those around me. As an empath, I feel the transferred struggles and the result mimics the endless tunnel that appears when two mirrors face each other. I lie because I’m a warrior, and warriors repudiate pity.

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Thinkstock Image By: Ferdiperdozniy

woman holding the back of her neck in pain

What It Was Like to Have Chiari Decompression Surgery


First, a little background on what Chiari malformation is. Its proper name is Arnold-Chiari malformation and it’s a birth defect that affects the bottom of the brain – the cerebellum. The cerebellum is herniated through the base of the skull putting pressure on both the cerebellum and spinal cord.

The brain produces cerebrospinal fluid which has several functions. It’s basically the brain’s messenger for the spinal cord nervous system that’s made of nerves that communicate with the rest of your body. With the cerebellum herniated through the base of the skull, it prevents the CSF from flowing properly, causing your body to malfunction, resulting in numerous “weird” symptoms.

 

CM is rare and often misdiagnosed as other conditions because the familiar symptoms can be the cause of many other things. A brain or neck MRI can detect CM and determine the depth of the herniation. After diagnosis comes the hard part of finding a doctor who can actually help. There is no proper treatment or cure yet except for surgery. Chiari decompression surgery is where they widen the base of the skull to relieve the brain pressure and to allow the CSF to flow properly. It’s supposed to keep the symptoms from progressing but there is no guarantee it will, so the prognosis varies.

In my case, I had a five-mm. herniation and a lot of fluid buildup. My symptoms progressed rapidly and my body felt like it was shutting down. I was told I needed to have decompression surgery and did in September 2016. Recovery for me was awful. I lost a lot of CSF when they opened me up so my brain was like a dry sponge after. I was warned headaches after surgery could be bad but no words could have prepared me for that experience. I laid in bed for two weeks barely able to move because any unwanted brain pressure would send me over the edge. The CSF takes forever to produce, but eventually I got relief and the headaches lessened.

Not quite a year since the decompression and still healing, I do feel a difference. The headaches aren’t as bad as pre-surgery and even if they were, it’s a walk in the park compared to my recovery headaches. With my brain and CSF communicating better with the rest of my body, I’m able to do more now, just not pain-free. Chronic pain, body weakness, insomnia, tingling and brain fog still linger with new symptoms: shortness of breathe, palpitations, joint pain/stiffness, night sweats, forgetfulness, constant muscle spasms, leg pain, etc.

From what I understand, CM can bring “friends,” other illnesses, and I’m hoping to find out if there’s anything else. Believe me, I don’t want more to deal with, but the unknown is scary and I need to know. It’s definitely a medical puzzle and my doctor said, “Piece by piece we’ll figure it out.” As much as I hate it, it gives me piece of mind knowing I’m being helped and makes it a tad bit easier to accept this painful journey.

The information I provided is based on my own research, my doctor/patient visits and how I understand CM to mean to me. It’s meant for sharing purposes only with hope to shed some light on your journey.

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Thinkstock photo via ZoranMilisavljevic83.

Why I'm Walking to Raise Awareness and Funds for Chiari Malformation Research


When I got sick, the most frequent question I got asked was “What can we do to help?” I really never had much of an answer to that question until today. Until I had an answer to the mystery of my health issues, I could not tell them what I needed. So many of us struggle alone because we live without knowing what is wrong with us.

It took over a decade to find out what was really wrong with me. Nobody should ever have to live like that. I have hypermobile Ehlers-Danlos syndrome and Chiari malformation. Chiari malformation is when the bottom of my cerebellum (the cerebral tonsils) extends into the spinal canal. It can be very painful and causes a laundry list of symptoms.

Some of the symptoms those of us with Chiari deal with are:

– Migraines

– Neck pain

– Muscle weakness

– Problems with coordination,

– Stiff muscles

– Pins and needles sensations

– Reduced sensation of touch

– Sensitivity to light

– Blurred vision or double vision

– Difficulty swallowing

– Nausea

– Vertigo

– Tinnitus

Now there are many other symptoms that people with Chiari face and that is why we need more research! That is what the Chiari and Syringomyelia Foundation aims to do with the [email protected] Walks. The walk’s purpose is to raise money for research for Chiari malformation and related conditions. It is a series of one-mile walks around the country starting in June.

CSF unite@night walks logo

I am so happy to be a part of the walk in Virginia Beach, VA on the 26th of August at 4:00 p.m. If I can help bring answers to families who do not have answers, then there is a purpose to all the struggling. I must admit though, my children are very young and have started showing signs. That is a big reason some of us parents walk and raise money. Because some of the related disorders are genetic and if we can save our kids pain, then we would climb mountains.

Find out where your local walk is and lend your time and your support.  There may be someone you know who is struggling in silence with Chiari and related disorders and you may be the lifeline they need.

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