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Parish Nurse Health Ministry

Call/text (253)279-2387 parishnurse@fedwaycc.org

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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

by DESIREE WEST-MCCARTY · THURSDAY, 4 APRIL 2019

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

by DESIREE WEST-MCCARTY · WEDNESDAY, 10 APRIL 2019

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.



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:

(KEEP SCROLLING OR CLICK ON CALENDAR BELOW FOR MORE DETAILS)

  • 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


-FLU SEASON IS HERE! TALK TO YOUR DOCTOR & GET VACCINATED.  COVER YOUR COUGH & WASH YOUR HANDS! :)

-FLU SEASON IS HERE! TALK TO YOUR DOCTOR & GET VACCINATED.

COVER YOUR COUGH & WASH YOUR HANDS! :)

Hello!

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,

Corinne

Cell number: (253) 279-2387

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Educational Information:

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


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 parishnurse@fedwaycc.org


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 it...call 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?

email: parishnurse@fedwaycc.org

call/text: (253)279-2387

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Learn more about Faith Community Nursing-  https://westberginstitute.org/faith-community-nursing/

Learn more about Faith Community Nursing- https://westberginstitute.org/faith-community-nursing/

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National Health Care Decisions Day www.nhdd.org

The Conversation Project https://theconversationproject.org/

Drug & Alcohol Rehab Centers, Counseling, & Support    https://startyourrecovery.org/treatment/rehab-centers/washington/seattle

Drug & Alcohol Rehab Centers, Counseling, & Support

https://startyourrecovery.org/treatment/rehab-centers/washington/seattle

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.

crisisclinic.org   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)

crisisclinic.org

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)

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.