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Parish Nurse Health Ministry

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April is Sarcoidosis Awareness Month

What is Sarcoidosis? (click here to read more)

See below for a personal patient story by one of our church members.

Part 1

Sarc Genesis


My headaches began in spring of 2016. I had been sick in May with a pretty bad sinus infection, so when the headaches started, I just thought they were residual from that. But after a while, they became daily occurrences. I would have a headache for hours and then go to bed hoping the sleep would help, but wake up with a headache the next day. There was never any relief. Sleeping was the only time I didn’t feel the headaches.

I finally went to see a doctor about it after about three months of pretty consistent headaches. My regular doctor was on vacation, so the doctor I met with in her absence encouraged me to keep a headache journal and go to the ER if it worsened. That was right before Labor Day weekend 2016. Over Labor Day weekend the headaches were so bad that I went to the ER. I received a CT scan (which didn’t show anything) and Benadryl (which knocks me out like crazy). So, for that day the headache was controlled because I just slept, but the headache came back as soon as the Benadryl wore off. So, I made a follow-up appointment with my primary care doctor. When I saw her, she referred me to a neurologist and encouraged me to also take riboflavin, a natural supplement that can be helpful for headaches. I was all for it because I prefer to do things the natural way when possible, and I was just excited that she didn’t tell me to take more Benadryl!

I started taking Riboflavin regularly. I also tried to set up an appointment with a neurologist. This was in September. I was not able to get an appointment with a neurologist until April, so I continued to deal with the headaches and kept a headache journal. It's depressing to read now. I was in so much pain, but most days it wasn’t debilitating enough that I had to stay home. The headaches were really bad but I could still go to work and hide my pain well enough to get by. Sometimes I would close the door to my office at lunch time and just lay with my head down on my desk hoping for some relief. It was during this time that I would come home from work and accidentally fall asleep on the couch when I was supposed to be prepping dinner. I was always exhausted. 

I would chart how long the headaches lasted (typically all day), and rate the level of pain I was in. But after some time on riboflavin, the headaches did seem to subside. I began to function better and I was glad that the riboflavin seemed to be helping. Come April, I finally had the neurology appointment. Although I was feeling better overall and the riboflavin seemed to help, I kept the appointment because I knew how long it took to get one. I gave the neurologist an overview of my story. I shared from my headache journal but we didn't really land on anything helpful. The riboflavin seemed to be helping, so the plan was to continue taking the riboflavin and be in touch if things got worse.

I felt like the appointment was a waste of time. It took seven months to get an appointment and I walked away feeling like I wasted my time and his. 

Life continued. In May my husband and I went to Hawaii to visit my sick mother-in-law and join family on a trip to celebrate my dad's retirement. I had a great time until I started to get headaches during car rides. I thought it was my dad's driving that was making me car sick. But then on our last day there a super strong headache came on after playing basketball in the pool. I spent the rest of the afternoon feeling horrible. I remember squeezing the sides of my head, trying to find some relief, and crying in my swimsuit by the pool. 

On my flight home the next day I vowed to myself that I'd go to the ER when I got home if the headache returned. It didn’t take long to happen. I got home from Hawaii Saturday night. By Sunday night I was at the ER. I was hesitant to go because 1) my first time in the ER they didn’t see anything in the CT scan and just gave me Benadryl, 2) I had seen a neurologist already and I felt like it was a waste of time for both me and him and 3) ER visits are expensive and I didn’t want to pay another $700+ to not get anything helpful out of the experience.

But I vowed to myself that I would go if it returned, so I went and I was there until 4 in the morning on Monday. I left with some very strong migraine medicine that is guaranteed to make you sleep a lot, so I told my boss what happened and let her know that I wouldn’t be able to work that day.

I did end up going to work on Tuesday and I went in on Wednesday, but felt so horrible, I left at lunchtime. To be honest, I barely remember driving home that day. I called my mom so I could talk to someone until I got home safely. Apparently, I made it home, but I don't remember. I just remember snippets of information, but don’t remember much else until five days later. I basically went home and slept. Jimmy made an appointment for me to see the neurologist on Thursday. I remember making a plan of attack with Jimmy:

“What if they just give me more migraine medicine?”

 “What should be my goal with this appointment?” 

I didn’t want more migraine medicine and a CT scan hadn’t shown anything. But by this point I was long convinced that something more serious than just a headache was happening to me. So, based on some online research I had done I came to a conclusion:

“I haven’t had an MRI yet. I’m not going to leave that office until I get one.”

My parents took me to the appointment that Thursday. I was in no condition to drive and they were concerned about me. In addition to the headaches and the fact that I was basically sleeping all day, my mom and Jimmy had noticed that I was dragging my foot when I walked. 

I don't remember any of that day, which was actually Jimmy’s birthday. I was awake on his birthday, but not alert. The best I can describe it is to say that I was like a zombie. I was talking and moving, but I couldn’t remember what I had done five minutes earlier. In hindsight I still feel horrible for sleeping through Jimmy’s birthday. I know there was nothing I could have done about it. But still, I hate that I missed his birthday that year.

At my appointment the neurologist ended up diagnosing me with “chronic migraines” and gave me some strong migraine medication. At this point I was beyond frustrated with all of these headaches and I wanted to push for an answer. I was sick of being given strong meds. I knew something was wrong with me. I had suspected something greater than a headache since fall 2016. This time I was going to advocate hard for myself, and I had already pre-determined that I wasn’t going to leave his office until he ordered an MRI, so I essentially demanded that the neurologist order an MRI. He was very reluctant, but basically did it in a way that said “Fine. This is just to appease you, but I really don’t think you need one.”

We were able to get an MRI scheduled for Saturday. My husband had to work on Saturday so my sister took me to the MRI appointment and the MRI tech saw some things that looked like multiple sclerosis. 

I was terrified. My sister helped me get to the ER and they admitted me right away. I was admitted to the hospital on Saturday, but I don't recall anything until my third day in the hospital when they finally treated me with steroids. They told Jimmy that they needed to get some other tests out of the way before I started the steroid treatment because the steroids could interfere with some of the other tests.

 Jimmy tells me that once I started getting the corticosteroid treatment it was like I was a new person within 30 minutes. I was talking to people, I was aware of what was going, on I wasn't in a fog anymore. He was amazed at how fast the steroids helped. 

They kept me in the hospital for a total of five more days so that I could get five days of a really high dosage of an IV version of the steroids. On one of these days the neurologist who hadn’t wanted to order the MRI stopped by my room to apologize for not treating my concerns as though they were legitimate. I was still bitter about my experience with him, but I respected that he went out of his way to apologize to me.

When I was discharged from the hospital, they still didn't know what was going on with me, but we walked away knowing three things:

- My MRI results were abnormal

- The neurologist was going to take my concerns seriously now

- I responded really well to the steroids. 

They say hindsight is 20/20. Here is what was going on now that we know what was going on:

- In Hawaii and immediately following, I was having a severe neurosarcoidosis flare up.

- When I have flare ups, I sometimes experience short-term memory loss.

- When I have flare ups, they typically result in some sort of loss of mobility.

- Fatigue is a side effect of sarcoisosis.

Part 2

Tests and Tests


After hospitalization #1, I took some time off of work while we tried to figure out what was going on with me. The neurologist in the hospital (who was fantastic) shared her hypothesis that my head MRI revealed something that resembled a demyelinating disease. A demyelinating disease is one that results in damage to the protective covering (myelin sheath) that surrounds nerve fibers in your brain, optic nerves and spinal cord. When the myelin sheath is damaged, nerve impulses slow or even stop, causing neurological problems. The most well-known demyelinating disease is multiple sclerosis.

In the hospital Jimmy became the demyelinating expert. Sure, there was some information online, but through his job, he had access to the University of Washington’s medical school library. He printed off a ton of information and was prepared to ask the right questions of the doctors. Ultimately, I wasn’t diagnosed with a demyelinating disease, but this exercise gave me a preview at what kind of partner I would have by my side throughout this journey.

Once I was discharged from the hospital all sorts of testing commenced and my days were filled with appointments. I started physical therapy for the first time. Sincethe time that my mom and Jimmy noticed I was unintentionally dragging my foot when I walked, I had some balance issues. I also was getting headaches when I read, so I worked on some visual and balance exercises.

Meanwhile I was tested for what seemed like everything including Lyme disease and HIV. At the age of two, I was diagnosed with epilepsy and had seizures until the age of 6. They didn’t think the epilepsy was a concern anymore, but they had to rule it out so they did an EEG (electroencephalogram, which tracks and records brain wave patterns in the electrical activity in the brain) and other tests including a lumbar puncture (also known as a spinal tap), angiogram (a procedure where they insert a catheter to release a contrast dye to help make arteries visible on an x-ray), an EMG (electromyography, which records the electrical activity produced by the muscles) and tons of blood work. There were other tests, I just don’t remember all of them.

All of these tests kept coming back negative. During this process, I was seeing the neurologist who was originally dismissive of me. Every time his name came up in a conversation or I had an appointment with him, I would curl my upper lip in a menace and make a growling sound. (Jimmy says that I’ve become more expressive since I’ve been sick. This is the first time I remember the expressiveness making a debut.) While I appreciated that he had apologized to me, I still didn’t trust him, so I was thrilled when one day he notified me that although he didn’t know what was going on with me, he did know it was beyond his area of expertise (he was a headache and migraine guy and it was clear at this time that I was dealing with something more serious), so he moved me to one of the neurologists who specialized in treating multiple sclerosis. I still see her today and she was more prepared to handle my case than he was.

As she took over my case, she ordered more tests and safely tapered me off of the oral steroids I was taking at home. I had basically run the full gamut of tests they would need and she wanted one more head MRI to see if there had been any changes. She informed me that if things got worse, the only way to figure out what was going on would be to secure a brain biopsy, but that would be a last resort. I agreed with her that it was a last resort. I didn’t think we were there yet.

I had completed my physical therapy sessions and finished all of the tests except for an MRI that was scheduled for the second weekend in August, so I went back to work in early August after a little more than two months off (vacation + hospitalization + a month of physical therapy and all sorts of tests). After being back nearly two weeks, Jimmy and I started to notice that I was having some issues walking, so I got an appointment with my new neurologist on a Friday morning. She had me do some neurological tests that she administered (out of the corner of your eye, can you say how many fingers I’m holding up, etc.) and she came to the conclusion that everything looked fine. I had a head MRI scheduled for Sunday, so she advised me to make sure I went to that appointment. I went to work for the rest of the day, but started feel funny in the afternoon. I worked the rest of the day but unbeknownst to me, when I left work that day, I wouldn’t work there again.

When I woke up Saturday morning, I proceeded with my usual habit of going to the bathroom to pee. But unlike usual, this time I fell in the bathroom. I can’t explain what happened. One second, I was standing up and the next, my knees had collapsed. That’s when I knew something without a doubt was going on. Jimmy took me to the ER right away and I was admitted to the hospital. My neurologist was on call that weekend and I recall her saying that at this point, securing a brain biopsy was the only way we could determine what was going on.

By now, there was no doubt in my mind that we needed to engage the last resort option. I didn’t care. I didn’t have time to research the potential impacts of what cutting into my head to secure a tiny piece of my brain and then stitching it back up could result in. I didn’t have time for a second or third opinion. The only thing I knew was that something serious was wrong and that I desperately wanted to be able to treat it. I was so over not feeling well; surgery wasn't even a question anymore.

On Sunday, instead of having a head MRI, as originally planned, I had brain surgery.

I woke up from surgery in the Critical Care Unit (which is related to the Intensive Care Unit. As I understand it ICU is essentially for situations where the patient is high-risk and requires constant surveillance. In CCU I was considered high risk, but a step lower than ICU. I was more of an intermediate risk) with about 15 staples in my head and a large gauze covering up where they had cut into it. My biopsy sample was sent to the University of California San Francisco, a top neurology medical school in the country, to obtain an official diagnosis. My doctors here understandably didn’t want to make predictions until they knew what was going on, but several horrible things like lymphoma (a type of cancer) were on the table.

While we waited, my recovery began. An inpatient physical therapist and occupational therapist visited me daily, but other than that, I spent the whole time in my really uncomfortable bed. From my hospital room, I could see my work office building across the street, a glimpse of the life I knew, but I would look out the window and be unable to imagine what my life was going to look like now.

Because I stayed in bed for 1.5 weeks straight, I didn’t see how bad the surgery damage was, but I would get glimpses here and there. I had a condition known as “left neglect (more details to come in the next post), and I could not sit up straight in bed. One of the worst impairments I experienced was cognitive. I couldn’t remember things for the life of me. To get a gauge for how I was doing, I would get asked simple questions.

“Where are you?”

“Tacoma General Hospital.”

“Why are you here?”

“Because I just had a brain biopsy and the doctors are trying to figure out what’s going on.”

“Who is the president?”

The lip curl would return and I’d menace. “Donald Trump unfortunately.”

“What year is it?”

“Umm, 2014?” (It was 2017 at the time)

This was the longest I had ever stayed in a hospital, and soon enough, I was learning my likes and dislikes. What my favorite meals were, which hospital staff I liked and which ones I didn’t. I had some of the best nurses. The first one I met was so sweet. I was stuck inside the hospital in August, one of the best times of year. She brought some sunshine to my life when she baked me and my family blueberry muffins. She’s also the nurse who got permission to wheel me in a wheelchair to the front of the hospital so I could catch the solar eclipse. She had bought eclipse-friendly sunglasses so I wouldn’t miss it.

There were also some staff I didn’t care for. The top of that list was a Certified Nurse Assistant who wheeled me to the toilet one day, then left to restock the bathroom with some supplies, never to return. The call button wasn’t working at the time, so I couldn’t ring a nurse for help. After a while I started yelling and thank God Jimmy heard me from the hallway and came to my rescue. When he contacted the staff, he was told that the CNA had gone to lunch, completely forgetting that she had left me unattended and stuck. To make things worse, I never got an apology from her. She just avoided me the rest of my time there.

After being in the hospital for about a week, I hit a breaking point. This is what I now think of as the commencement of my Dark Age. I still cringe when I reflect on my time after the brain surgery. It was a dark time for my mental health indeed.

One of my cool nurses, James, was taking my vitals one morning shortly after I woke up.

“How are you doing?” he asked.

I was still waking up, but the realization that I was still there with no answers and no idea when I would get them, suddenly hit me and I lost it and started to cry. I had hit my breaking point. I lost my patience, and also felt like I was losing part of myself. I was in the hospital because UCSF still hadn’t made an official diagnosis from my biopsy. My doctors didn’t want to discharge me in case the diagnosis required immediate medical attention (like if it was lymphoma, they maybe would have to start treatment right away), but until we heard back, we were just waiting. When I woke up that morning, I woke up with a resolve get out of the hospital now.

Around this time, I noticed a pain in my right calf. I mentioned this to the doctor and she ordered an ultrasound and discovered that I had developed a blood clot in my leg, which led to more tests revealing I also had developed a blood clot in my lungs which would require me to be on blood thinners for six months.

All of this happened while I was waiting to hear from UCSF. I was able to develop additional issues to deal with – a pulmonary embolism and deep vein thrombosis—but I still didn’t have a diagnosis for what was going on in my head!

What is known about sarcoidosis that I experienced in this time frame:

- They call sarcoidosis a diagnosis of exclusion because it can masquerade as many other things, so a lot has to be ruled out (Lyme disease, HIV, etc.) before sarcoidosis can be diagnosed.

- Sarcoidosis can affect people at any age, but 70% of patients are between 20-40 when first symptoms appear.

- Most people with neurosarcoidosis have sarcoidosis in another organ first, so when it spreads to the central nervous system, it’s easier to diagnose. But since I have it isolated in my brain, the best way to accurately diagnose it is with a biopsy.

part 3



I was in the hospital for a total of 1.5 weeks when the hospital neurologist sat us down to tell us what she was pretty sure my diagnosis was. We still hadn’t received the official word from UCSF, but based on some preliminary reports, we know they found granulomas in my biopsy sample and they could confirm I didn’t have lymphoma. She felt confident in telling us that I had neurosarcoidosis.

My dad had pulmonary sarcoidosis (sarcoidosis in the lungs) in his mid-30s, so I was familiar with the word, but I was so young when he had it that I didn’t really know what it was or how it impacted him. In fact, when I went to a new primary care doctor in 2013 and she was asking me about my family history, I couldn’t remember the name of what my dad had for the life of me. I found out later and emailed my doctor to complete my family history records.

During the time we were trying to figure out my diagnosis, we had told the doctors several times that my dad had sarcoidosis, but we were assured over and over that sarcoidosis wasn’t hereditary, so that information was basically just swept under the rug. But here I was learning I had sarcoidosis in my brain.

When the inpatient neurologist told us I likely had neurosarcoidosis, she explained sarcoidosis is an autoimmune inflammatory disease and that it’s still not known how people get it. We learned that granulomas are small masses of inflammation in the body that are typically benign (as was in my case). She stressed big time that we need to be very careful when we look information up about this disease because there is some pretty scary stuff out there. But she assured us that the medical community is learning more about sarcoidosis all the time and that the prognosis is getting better. In fact, she revealed that a lot of advancements in research have been made in the last 10 years or so and she stressed that we shouldn’t get scared by some of the dated and sometimes morbid information we would probably find online.

And since we didn’t know how long it would take to receive the official word from UCSF, a plan was created for what was next for me. From what the doctors, physical therapist and occupational therapist saw, they did not think I was ready to go home. Instead, what they recommended was that I go to inpatient rehabilitation, or IPR as my nurses referred to it.

Even though I had worked in the same hospital system I was getting treatment at, I didn’t really know what inpatient rehab was. IPR is rehabilitation for patients who require a high level of physical intervention and a combination of therapies. Most patients are referred while they’re still in the hospital, recovering from a serious event or injury that has impacted their ability to function independently, such as a stroke or traumatic brain injury.

The news that they wanted to transfer me to IPR was devastating. Remember, I was in the midst of what I now refer to as my Dark Age, so even though I really didn’t know what IPR was, I didn’t like it because first and foremost, it meant I wouldn’t be able to go home and I had learned that the rooms there were double occupancy and I was going to have a roommate.

I knew I wasn’t going to get lucky enough to love my roommate pairing as much as I did in college and I thought I was done with the whole roommate thing after I got married (technically Jimmy is my roommate, but you know what I mean). Up to this point, Jimmy had spent every night in the hospital with me. Every night of this 1.5-week hospital stay and every night of my first one-week hospitalization in May. He got to know all the futons and fold out couches a little too well. He is pretty incredible and I without a doubt was leaning on him for strength this whole time. I deeply appreciated him being by my side.

IPR is what the doctors wanted, but I knew I still ultimately had a choice. If I didn’t want to go, I didn’t have to. I also wasn’t convinced I needed it. Sure, I wasn’t doing great in my PT and OT sessions, but who’s to say that I wouldn’t recover beautifully at home? I wanted to go home so badly. Delaying that for who knows how long didn’t sound like a good plan to me.

I didn’t want to go to IPR, but I was also told that the period of time immediately following the surgery was the best time to prevent permanent or long-term damage. When time was up to make a decision I ultimately agreed to go because of Jimmy. He was deeply concerned by what he saw in the hospital and definitely didn’t think I was ready to go home. Post-surgery I couldn’t sit up straight. Instead I would slump over and someone would inevitably have to come straighten me out. I couldn’t do essential self-care tasks like wipe myself or shower. I was not able to do things like put a shirt on correctly or tie a hospital gown. I couldn’t stand without assistance and I couldn’t walk. In addition, my speech was slurred and although I had always had 20/20 vision, I was having trouble seeing nearsighted. I also had something known as left neglect.

Prior to my biopsy, the neurosurgeon asked if I was right handed or left handed. I am right handed, and this knowledge meant that while cutting into my brain, he could manipulate where the damage was experienced by taking the biopsy from the opposite side. In the brain, the right hemisphere controls the left side of the body and vice versa. So, the biopsy was taken from the right hemisphere of my brain and the damage was manifested on the left side of my body. One of the side effects I had is a condition known as left neglect, a neuropsychological condition where the person behaves as though the left side of the sensory space is nonexistent. Physically, I tended not to use my left hand at all, and visually, if someone was standing on my left side talking to me, I could hear them, but I wouldn’t look at them. I would tend to look straight ahead when I responded to them. From my perspective, they were standing outside of my field of vision.

I finally agreed to go to IPR. When I left, I wasn’t discharged from Tacoma General Hospital. Instead I was transferred to inpatient rehab at Good Samaritan Hospital. They allowed Jimmy to drive me there, and on the way, I remember making a pact with him.

“Just give it a shot for two weeks. After that, you can leave if you’re not making progress or you don’t like it.”

I probably acted like a stuck-up teenager when I responded.

“Fine. But I’m only doing this for you. Two weeks. That’s all they have.”

It is with this attitude that I approached the rehab unit at Good Sam.

There are some things you should know about me. First, I am an athlete. I played competitive sports in middle school and high school. And more recently, I was a runner. Jimmy and I both had run about 12 half marathons and a marathon in the four prior years. Second, I’m a strong Type A personality. I’m a planner who will map out a step-by-step plan and then map out when each step needs to be completed because I’m also deadline driven.

These things played to my advantage and detriment while I was in IPR. My athletic experience gave me the drive and persistence I needed to not give up when things got physically challenging. Any time I was tempted to give up, I would flash back to how hard the marathon was and how I didn’t give up then. My Type A-ness meant that I knew I’d agreed to stay for two weeks, but meant I was not prepared to cooperate if that plan changed.

On our drive to rehab, I soaked up the sunshine and the freedom of not being confined to the hospital walls, but that didn’t last long. I checked into rehab, met some of my new nurses, ate dinner in the cafeteria and said a teary goodbye to Jimmy. The best part of this in my mind was that Jimmy would be allowed to sleep in our comfy bed at home instead of the fold-out hospital couch because they would not let him sleep in the room or the IPR wing of the hospital.

That night, like every night I spent the duration of my rehab stay, I cried quietly when lights went out. I had been through a lot, but I didn’t have a chance to process it. I process best when I’m alone. That first night was the first time I felt alone and the reality of all I had experienced flooded over me. I had brain surgery. They think I have a brain disease. They gave me a wheelchair because I can’t walk. I can’t even go pee without assistance.

I woke up my first day there with determination to finish this so I can go home.

That first day was even harder than the first night. It was filled with assessments. In physical therapy and occupational therapy, the reality of the damage incurred by the surgery hit me like a tsunami. For each activity they had me perform, I wasn’t able to do things that even a toddler could do. In speech therapy, (I mistakenly thought speech therapy is only to help people speak better, but it’s also to help with cognition, something I was quite weak in at this point) my speech therapist was the first person on my care team who had asked how I was doing. This question released the flood works as I told her that I still was trying to process everything.

After the shock of day one, the following days were a little better. Every day I typically had two physical therapy, two occupational therapy and one speech therapy session. We technically had weekends off, with the chance that you might get called in for a session by a therapist working on the weekend. I had physical therapy sessions both weekends I was there. I didn’t mind because I wanted to squeeze as much out of this experience as possible before my self-imposed two-week deadline was up.

Jimmy visited me every night after work and would usually stay until he’d barely be able to keep his eyes open. Then he would wake up early in the morning, drive to Good Sam and visit me before he went to work. He also helped me keep my sanity by visiting all day on the weekends. He’d wheel me all over the hospital grounds, which we got to know really well.

I had other visitors as well. Family, friends, church family. They all kept me going. I received cards and encouragement from all around the country and even got one letter from friends in Switzerland!

During this time, I made progress, but not the kind I was hoping for. I hadn’t slept well at all since the surgery. When I was in Tacoma General, the constant influx of nurses at night kept me awake. In rehab my room was right by the nurse’s station, and I could hear every time a patient called a nurse and every time an alarm went off. I also had a roommate with very different sleeping styles than me (she would sleep with the TV on loud), and every morning at about 4 a.m. I would get a visit from the phlebotomist (or as I affectionately called them, the vampires, because they would take my blood in the middle of the night). Additionally, I was taking a high dosage of prednisone, a corticosteroid. That med made me wired and wide awake. I maybe got three or four hours of intermittent sleep a night, which is extra bad when my brain needed to heal from surgery. Sleep was more necessary than any of the other drugs they gave me, yet it turns out that a hospital is not a good place to get the greatest medicine of all—sleep.

My rehab doctor had tried a few meds to help me sleep, but it took about three tries before we found one that finally worked. That first night of solid sleep was glorious!

Around this time, a solo room became available and I got to move into it. I slept much better the rest of my time there, and almost immediately my therapists could tell the difference. I was performing better; I was understanding better and I had more energy.

I also achieved a milestone: though my walking still wasn’t strong, I no longer required a wheelchair and was given a special band which signaled that I had permission to walk to my bathroom and to the cafeteria unassisted. Sleep + getting my own room + starting to make progress in therapy + not having to use the wheelchair meant that I was so much happier and felt ready to be at home.

Before they discharged me, they wanted to ensure I was going to be set up for success at home. The day before I was discharged, I took a field trip to my house in a shuttle bus with one of my therapists. It was a bit surreal for me. I hadn’t been home in about a month, during which I suffered some cognitive setbacks. It’s not that I forgot where my house was, but I couldn’t remember specifics of the house layout from memory and probably told the driver a roundabout way of getting there.

In my house, the therapist looked at our set up and offered tips on how to navigate my day-to-day needs at home. She provided advice for things like how best to get into bed (I have a tall bed), which safety equipment we would need to purchase and how to get into and out of my shower.

When it was time to leave, I was so tempted to kick them out of the house and lock the door so they couldn’t make me go back, but alas Jimmy was at the house for the home visit and he made sure I got back on the shuttle. Sigh.



1. Sarcoidosis technically isn’t an autoimmune disease. From what is known about sarcoidosis, it is like an autoimmune disease, but by the definition of autoimmune, it is not.

Here’s my laymen’s attempt at explaining it (i.e. I’m sure a doctor would have qualms with this):

Sarcoidosis acts like an autoimmune disease and is treated like an autoimmune disease, but it doesn’t meet the standards of an autoimmune disease in the medical world. It’s really just semantics.

Here is a more accurate answer provided by the Foundation for Sarcoidosis Research:

“There is some growing evidence that this sarcoidosis immune response may also include an ‘autoimmune’ response, with some reaction to “self” proteins. However, at the current time we do NOT consider sarcoidosis for the most part to be an autoimmune disease, like rheumatoid arthritis (RA) or systemic lupus erythematosis (lupus).”

“. . . The cells from some people with sarcoidosis demonstrate an immune response to some of their own proteins, similar to autoimmune diseases. The exact role of this “autoimmunity” in sarcoidosis is not clear, although it is actively being studied. . .”

“The presence of this “autoimmune” process could support the use of some treatments that we have been testing in patients with sarcoidosis. . . At this time, while we do not think that sarcoidosis is the same as diseases like RA, or lupus, studies do indicate that some of the immune reactions and genetic factors are similar between these diseases. . . By better defining the mechanisms that cause sarcoidosis . . .we may be better able to treat patients with sarcoidosis and maybe one day, even prevent the disease.”

“In summary, although there are some similar features, based on today’s science we do not advocate using the label “autoimmune” to describe sarcoidosis.”[1]

2. Despite being told that it isn’t hereditary, in July 2018, a research study from Sweden reported that risk of sarcoidosis is higher in families with a history of the disease.

Although they don’t know the exact cause of sarcoidosis, there are some trends with environmental factors for some patients. Also, “Experts currently think that one or more exposures in people who have a specific genetic makeup can cause cells in the body to react and start to recruit inflammatory cells to involved organs; that is, something starts an immune response. Some research suggests that bacteria, viruses, or chemicals might trigger the disease. Such triggers, although usually harmless in most people, might irritate the immune systems of people who are at genetic risk for developing sarcoidosis.”[2]

3. Though the hospital neurologist who first told me about sarcoidosis was great, I found out a lot more later on. She was in a precarious predicament because my diagnosis hadn’t officially arrived, but I do wish the potential seriousness of the disease was conveyed to me. It can be a chronic disease and you can die from it. You could also even get a stroke from neurosarcoidosis. This wasn’t told to me. The Foundation for Sarcoidosis Research is looking into what patients were told about sarcoidosis at diagnosis so that they can help educate the medical community better.

“There is a tendency among doctors, researchers, and advocates to speak of sarcoidosis as a disease that is not serious or one that resolves. Statements such as, “with good medical care, most cases of sarcoidosis are controlled” can be misleading and harmful; they convey a message that if patients are proactive, they will go into remission or be able to easily manage the disease. Furthermore, it reinforces the beliefs among many clinicians that it’s appropriate to diagnose patients with sarcoidosis and declare it to be “good news.” This is especially problematic for patients who will go on to suffer from advanced sarcoidosis.”[3]




part 4



After the field trip to my house with my therapist, I headed back to wrap up my time in inpatient rehab (IPR). The next day I discharged with one of my nurses, who had prepared a packet for me. It contained information about the medications I was now taking and my prescribed dosage (I was assured it wasn’t that many, but for someone who had only taken daily vitamins, it seemed like a lot), follow up appointments I needed to make with doctors, my outpatient physical therapy, speech therapy and occupational therapy schedule and tips from my medical team about exercises I could do at home.

The packet was extremely helpful, but even more helpful was the knowledge I was leaving IPR with a confirmation that I indeed had neurosarcoidosis. During a random day in IPR, my IPR doctor informed me that a report came from UCSF with a confirmation that I had neurosarcoidosis. Naturally, we had developed many more questions after we had time to process the news. However, the IPR doctor wasn’t able to share much because he wasn’t a neurologist and couldn’t answer our questions. So, our questions festered.

When I left IPR I had made a lot of progress from when I first arrived, but I was still far from where I was before surgery (and still am). I was temporarily farsighted, my cognition (especially executive functions) was still poor, I could stand but was not walking well, and I still had left neglect (once when walking with my therapist back to my room in IPR I managed to crash into the left side of the door frame because it wasn’t in my field of vision).

Those first few days at home were an orientation of sorts. I had to figure out my new normal. Jimmy went to the pharmacy and we probably spent two hours sorting through my meds and making a schedule of what times I needed to take each one and when I could and couldn’t eat food with certain meds.

IPR was very helpful, but it didn’t eliminate my issues. It really gave me the tools to function despite those issues. For my cognitive challenges, I learned to write notes or make notes in my phone to help me remember certain things. My speech therapist had me keep a log of things I did every day, including details like what food I ate with each meal, so that I could remember later. As much as I initially didn’t want to go to IPR, I had to admit that it was helpful, and when I was discharged to go home, my Dark Age came to an end. Although there were still rough days ahead, I was finally home and the skies suddenly seemed bluer.

My top priorities when I got home were three-fold: first, I wanted to take a long, hot shower with privacy. In IPR and the hospital, a staff member was always nearby to help make sure I didn’t fall. Second, I wanted to see my neurologist and flood her with questions. And finally, I wanted to get my vision issues addressed. In IPR I was on the list to see a neuro-optometrist (who specializes in treating vision related problems due to neurological issues), but he only came to IPR once a week and my schedule didn’t overlap with his.

The hot shower came pretty much as soon as I got home. Next on the list was seeing my neurologist. I saw her my second day home from IPR, but unfortunately, Jimmy and I didn’t have enough time with her to ask all of our questions and it was entirely my fault. Her office can be about a fifteen-minute drive from my house, and we planned to leave about 20 minutes before I needed to be there. We didn’t account for the fact that I was moving slower. Things like getting dressed and putting shoes on seemed to take twice as long as they used to. By the time we got to my appointment, we were 15 minutes late to a 30-minute appointment. That morning taught us a very important lesson: From now on, we had to leave a lot earlier to get to places on time. I can assure you we haven’t been late to a neurology appointment since, and always leave the house with ample time before we need to be some place. I recently read Michelle Obama’s Becoming and at one point she shares that as a young girl her family was always early to their engagements because her dad had a disability that resulted from his multiple sclerosis. I can relate.

In that first appointment with my neurologist after IPR, I learned a new nugget of information: The UCSF report not only confirmed I had neurosarcoidosis, but also diagnosed me with sarcoid-related small vessel vasculitis (inflammation of the blood vessels) in my brain. My doctor assured me that the treatment for sarcoidosis would treat the vasculitis as well, so I basically took the vasculitis information and stored it deep in my brain. No need to worry about it now. If we figured out a treatment for my sarcoidosis, the vasculitis should be taken care of as well.

My new life became a series of appointments. Every week I had physical therapy, occupational therapy and speech therapy appointments. I also had a number of head MRIs, neurology appointments, and appointments with a neuro-optometrist. He gave me a prescription for glasses (which I never had to wear before) and gave me a series of eye exercises to work on at home between appointments.

When I wasn’t at appointments, I was at home doing word search puzzles. Jimmy had got me some word search magazines to fill my downtime while I was in IPR. Normally I would have loved to read with my spare time, but since I was having cognitive and visual troubles, reading wasn’t enjoyable at all. So, word searches became my BFFs. They were extremely hard at first, but mind games and mind puzzles were recommended exercises for cognitive healing, so I kept at it. After a few months of spending three or sometimes four hours a day doing word searches, I became a word search wiz. Most importantly, it signaled the cognitive improvements I made and eventually my outpatient speech therapist said her work with me was done. I graduated from speech therapy!

During this time, we sere trying to figure out my treatment plan for the neurosarcoidosis. For a few months I was getting IVIG treatments (intravenous immunoglobulin, which essentially is ­­­­­­­­­when you are infused with concentrated filtered blood products) in four-hour intervals twice a week for once a month. After a few months of getting IVIG treatments my insurance denied it, stating that it was experimental for neurosarcoidosis, and therefore not proven to be an effective treatment. Since the IVIG was denied, when the new year started in 2018 my neurosarcoidosis treatment just became two oral drugs I had been taking since the brain surgery—prednisone, an immunosuppressant and corticosteroid that I hate (because its side effects are brutal) and love (because it’s pretty much saved my life) and CellCept, an immune system suppressant.

Since I am a firm believer in Hippocrates’ famous quote, “let food be thy medicine and medicine be thy food” I also cleaned up my diet. I had been a vegetarian for about four years at this point, but I wanted to eat even healthier and adopted what I believe to be the healthiest way of eating around—I started eating a whole food plant-based diet on January 1, 2018. I cut all dairy and animal products from my diet. Jimmy and I both decided to cut out all processed sugar as well, and since the high doses of prednisone I was taking lead to guaranteed weight gain, I also cut out all white flour from my diet. This was a way of eating that I had considered before, and said that I would eat that way if I needed to. But now I had a brain disease, so maybe I needed to which is why I did. Since I was denied my IVIG treatment, I decided to let food be my medicine.

I adjusted to my new normal life filled with appointments and a plant-based diet. I had completed my speech therapy sessions and only had about two occupational therapy sessions left. In physical therapy I had advanced enough that I was warming up by jogging on a treadmill for 10-15 minutes and going for walks around my neighborhood by myself. In fact, I was jogging so well on the treadmill that my physical therapist said my homework for that weekend was to go with Jimmy on a run! I was excited, yet terrified. It was March 2018 and I hadn’t gone for a run since May 2017. I was sure I was out of shape now, but nonetheless I was so ready to hit the pavement.

But it never happened.

The next Saturday Jimmy and I had planned to go for a run after we let our breakfast digest. We ate breakfast and I was still drinking my tea when I suddenly started to feel numbness and tingling in my face, and right hand and right arm. I mentioned it to Jimmy and he jumped into action mode. He started mimicking the tests he had seen my neurologists do so many times in the hospital and at appointments, but soon enough the tingling stopped. He had me stand up and walk with him to our bedroom. I could barely stand. When I tried to walk, my legs buckled. He declared he was going to call 911 and I argued that I was fine.

“You can’t even walk. I’m calling them.”

Holding onto him, I persuaded him to walk me to the bedroom. I hadn’t even brushed my teeth yet. I at least wanted to do that, do my hair and change before we went anywhere. We barely made it to the bedroom. He called 911. I tried to sit on the carpet so I could put my jeans on, but I barely did that. I tried to prop my arm up while I sat so I could lean on it, but my arm buckled. At this point I surrendered that there was no way I could brush my teeth or do my hair before the paramedics came. Thankfully Jimmy helped me at least get some sweat pants on.

The paramedics arrived in no time. When I told them my symptoms, they asked me all sorts of questions as though I had a stroke, but I insisted it wasn’t a stroke; it was a flare up of my neurosarcoidosis (which of course they hadn’t heard of).

I had worked in marketing for five years at the health system I had received all my care at. In the past my clients consisted of the cardiac and neurosciences groups. I had helped both of those clients raise stroke awareness and helped them with the local heart and stroke walk. I was familiar with stroke signs and symptoms—probably more than the average person my age. I had written about strokes to educate others and I knew the symptoms I was showing were similar, and that had even crossed my mind when I was feeling numb and tingling sensations, but I was in my mid-30s, ate really clean, did not have high cholesterol or blood pressure and exercised regularly (even since my time home from brain surgery, I had limited mobility, but had been able to pick up my Jillian Michaels workout videos again with some modifications made). There was no way I had a stroke.

The paramedics said I needed to go to the ER, but asked if we wanted to drive there ourselves because the fees for going in an ambulance were going to be exorbitant, so they helped Jimmy load me in our car and we went to the ER.

Because I didn’t arrive in an ambulance and kept insisting that I didn’t have a stroke, but a neurosarcoidosis relapse, they didn’t triage me as urgently and it was a few hours before I saw a doctor and got a head MRI.

When the MRI results came back and the doctor first told me I had a stroke, I thought she was mistaken. I’ve since learned that that 1/3 of strokes occur in people under the age of 65 and that children, even infants, can get a stroke. In fact, stroke is one of the top 10 causes of death in children[1]. (For children, they often have another medical condition that leads to the stroke such as sickle cell disease, autoimmune disorders or congenital heart disease.) When I learned this, I was baffled. You may need to be a certain age to drive an automobile or enlist in the military, but stroke has no age limits.

In my case the stroke was caused by my vasculitis. Remember that one diagnosis asterisk I received a few weeks after I first heard the word neurosarcoidosis? The one diagnosis detail that I tucked away in the back of my mind? Yeah, that is what ultimately caused the stroke. I was having a sarcoidosis flare up, but more precisely I was having a vasculitis flare up and I didn’t know that could cause a stroke. The blood vessels in my brain had gotten so inflamed the blood flow to my brain was temporarily blocked, causing a transient ischemic attack, or a mini-stroke.

Following the stroke, I spent a few days in the hospital again. Three key events occurred during this hospital stay that I still think of often. The first was my first time peeing in my bathroom. My nurse was not capable of handling patients with mobility limitations and as Jimmy helped her wheel me in the bathroom, she was supposed to guide me to the toilet while he kept the wheelchair steady. She positioned me and told me I could pee now, but I told her it didn’t feel like I was seated right. She assured me I was, so I went pee as she encouraged me to do. But instead of peeing in the toilet, I peed all over my pants and on the floor.

The second event that I still replay in my head was one morning when the same nurse brought my morning meds. I noticed a new pill in the mix and questioned her about it. She stated that the doctor must have added that order the night before. I told her that the doctor hadn’t mentioned it to me, but she confidently persisted that it was a new order from the doctor. So, I took it. Luckily it was a vitamin (zinc?) that wasn’t harmful because I later found out it wasn’t intended for me when I got an apology from my nurse and the doctor for her error. The pill was intended for the guy in the room next to me. (The doctor later told me she got a big write up for this. This was a major error).

The third event was with a different nurse who tried to give me a statin. Statins are a type of drug given to people to lower their cholesterol. High cholesterol is a common factor with stroke victims and giving statins to stroke patients was protocol, but one of my other nurses had actually told me I had one of the best cholesterol levels she had ever seen. The sarcoidosis-caused vasculitis is what caused my stroke, not high cholesterol. I did not want to take any more medicine than I needed to, so I declined taking the statin. The nurse later contacted my neurologist who confirmed that I was right. I didn’t need to start taking statins.

I share these stories not to complain about the care I received. In fact, I received excellent care for the most part. I share these to stress the importance of sitting in the driver’s seat when it comes to your own medical care. Your medical team is kind of like traffic signs. They point to which direction you should go and they advise the best way to get to your destination safely, but they sometimes make mistakes and its ultimately you who has to drive there.

After a few days in the hospital I was transferred to the inpatient rehab unit at Good Samaritan Hospital again. The stroke left me with severe weakness in my right hand, arm and leg, so the therapists worked with me to re-learn how to walk and do activities like dress myself, shower and do my hair. When I first arrived in IPR I needed two staff to assist me with going to the bathroom and I was in a wheelchair my entire time in rehab. By the time I was discharged 2 weeks later, I was going to the bathroom unassisted and walking without a wheelchair or device at home.

IPR was amazing for my recovery both times I was a patient there. Since my discharge in March 2018, I haven’t been back and I intend to keep it that way. I became friends with some of the staff, but I prefer visiting them to bring scones or donuts like I did a month after I got out—not giving them more work to do.

The stroke was 13 months ago. Having the stroke was an indicator that my treatment at the time wasn’t working. Since I’ve been home, my neurologists (yes, I have two now because my case is so “special” that I need a team of neurologists) have been adjusting my treatments. I started the treatment I’m on now in May 2018 and so far, it seems to be working. I say that cautiously because one thing I’ve learned with this neurosarcoidosis journey is that I’ll never have it all figured out.

What I do know is that I’ve got a superstar husband by my side who has made this wild experience bearable. I know that I’ve got an excellent support system in my family and friends. And I know for certain something I’ve always believed, but became an undeniable truth on this sarc journey: I am never alone. God’s presence is always in my life. No matter how dark the times have been, He’s been my constant light.


Please see below for personal update about Corinne 1/5/19

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know your numbers!

Next blood pressure clinic:

March 10 & 24

April 7 & 28

May & June - no BP clinics (baby due May 19)

Meet in the small auditorium immediately following morning worship service.

There is a LOT of information on this page... keep scrolling... 

You will find

-community events

-BP clinic information

-Parish nurse contact info & a description of the role

-internet resources (including mental health, crisis clinic, and "Where to Turn" resource guide)

-events calendar

upcoming community events:


  • 2/19 thru 3/26 - FREE Caregiver Wellness Class, Tuesdays

  • 3/24 - BP clinic

  • 4/7 - BP clinic

  • 4/16 - National Health Care Decisions Day

  • 4/20 - Veterans Resource Fair @ Tacoma Dome

  • 4/28 - BP clinic





My name is Corinne Stevens, and I am the Parish Nurse for The Church of Christ at Federal Way. 

what is a parish nurse?

A Parish Nurse (sometimes called a Faith Community Nurse) is a licensed Registered Nurse with specialty training to provide a health ministry to the congregation. The Parish Nurse offers a part-time, volunteer professional service to the congregation, focusing on wellness, wholeness, and support during health crises and life transitions. 

In other words...I am a healthcare resource for you, at no cost. If you have a medical concern or question, I will try to help you answer it or find someone who can.

why a parish nurse?

I truly believe all aspects of life influence each other, and all those parts together make us into amazing people created by God. I believe faith and prayer are just as important as diet and exercise. I believe stress is a very real thing and can negatively effect your health (I've lived through that). I believe anxiety and depression are not signs of weakness (also lived through that). I believe being still and quiet is as important as being interactive and fun. I am not perfect at these things, but I try to balance all the pieces of the puzzle... it is definitely a work in progress... and definitely sometimes puzzling. I would love to be a part of your journey if you feel the need for more life balance. 

My Background in Healthcare

I am a Registered Nurse (RN) licensed in Washington State, with a Bachelor's of Science in Nursing degree from Pacific Lutheran University. I also have specialty certifications in Adult Critical Care Nursing (CCRN) and Faith Community Nursing (FCN). I have been a Registered Nurse since 2006, and also worked as a nurse's aide for 9 years before I earned my RN. I have spent most of my RN years working in the Intensive Care Unit (ICU).

Personal Update - Jan 5, 2019

Last spring my husband and I welcomed our 2nd baby girl into the family. She is currently 9 months old and just as busy and happy as you would imagine. Our older daughter is a senior in high school this year, and graduates in June. I am also 5 months pregnant with baby girl #3! She is due to arrive in May. As if that were not enough, I continue to work part time night shift as a telephone triage/ transfer nurse. If you are trying to contact me, please don’t hesitate to text or call. I am trying to stay caught up with emails and new events for the calendar, but each day has it’s own fullness, and sometimes these things get away from me. I know this addition to our family will slow down Parish Nurse activity even more than it already has been this year. I likely will be taking some time in the spring to recover and readjust. Thank you all for your support and patience. I wish you all a happy 2019, and hope to see you at worship.

Be well,


Cell number: (253) 279-2387


Educational Information:

Please email Corinne if you would like a printable version of any of the materials above.

Parish Nurse contact info & availability:

For 2018, I am focusing more on my webpage for community resources/ information, and individual needs as requested. But I need referrals! If you or someone you know would like a visit from the parish nurse, please contact me. I will likely be in the office on an unscheduled, intermittent basis as I care for my newborn baby girl. My office is located in the library, downstairs at the church building. If you would like a home or hospital visit, please contact Corinne to set up a date and time that works best. Call/text (253)279-2387 or Email

how to use parish nurse services

I am available to advise and guide you to resources and listen to your concerns. For example, you may leave the doctor's office or be discharged from the hospital thinking you understand your instructions, but realize you don't once you get home. Instead of pretending you know what to do, call the Parish Nurse! Can't remember how to give yourself those insulin shots? Call the Parish Nurse! Want a quick blood pressure check? Call the Parish Nurse! Think you might need to go to the doctor for something that's been bothering you, but you're not sure? You've got the Parish Nurse!

Now a few things to keep in mind...

I do not replace your primary care physician.

I am not a home health nurse.

I am not a therapist.

I am not a preacher/ minister. 

I am a free healthcare resource. I have several years of bedside experience in both nursing homes and hospitals. While the majority of my working experience is with the critically ill, my passion has developed into preventative and holistic forms of healthcare.

I purely work on a volunteer (and part time) basis as the Parish Nurse because a couple years ago I felt a huge pull on my heart, a calling from God, to do this work.

...this is a repeat of what I said at the beginning of this page:

I truly believe all aspects of life influence each other, and all those parts together make us into amazing people created by God. I believe faith and prayer are just as important as diet and exercise. I believe stress is a very real thing and can negatively effect your health (I've lived through that). I believe anxiety and depression are not signs of weakness (also lived through that). I believe being still and quiet is as important as being interactive and fun. I am not perfect at these things, but I try to balance all the pieces of the puzzle... it is definitely a work in progress... and definitely sometimes puzzling. I would love to be a part of your journey if you feel the need for more life balance. 

How do I contact the Parish Nurse?


call/text: (253)279-2387

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Learn more about Faith Community Nursing-

Learn more about Faith Community Nursing-

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National Health Care Decisions Day

The Conversation Project

Drug & Alcohol Rehab Centers, Counseling, & Support

Drug & Alcohol Rehab Centers, Counseling, & Support

Click here  for Alan Taylor's website ,   Mental Health Companionship , for mental health support and education.

Click here for Alan Taylor's website, Mental Health Companionship, for mental health support and education.   24-HOUR CRISIS LINE:  866-4-CRISIS(866-427-4747)  KING COUNTY 2-1-1:  DIAL 2-1-1800-621-4636  (M-F 8am-6pm)  WA RECOVERY HELP LINE:  866-789-1511 (24/7)  TEEN LINK: 866-833-6546  (EVENINGS 6-10pm)




DIAL 2-1-1800-621-4636

(M-F 8am-6pm)


866-789-1511 (24/7)

TEEN LINK: 866-833-6546

(EVENINGS 6-10pm)

Click here  for the website by Nora Taylor,  Nora Cooks , for delicious plant based recipes for the whole family.

Click here for the website by Nora Taylor, Nora Cooks, for delicious plant based recipes for the whole family.