Find a Hobby

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Attending some sort of counseling is important when going through any health crisis whether short-term or chronic. After the diagnosis of my pituitary tumor, I started to see someone to help me process through and prepare for neurosurgery. I have quit counting weeks out. I think I’m somewhere around 10 weeks or so. But I had a really rough week about a week ago. I have had new pain in both hips. I’m still searching for one doctor who will help manage my fractures and see me when I have new pain. However, I have great doctors (ENT and Endocrinologist) who in the mean time ask me about all of my health and order the x-rays and MRIs when I have these pains. So in the last two weeks, we have learned I have a fourth fracture in my right pelvis, possibly a new one in the left and fractures on both of the “wings” of my sacrum. Tomorrow I will have another MRI, this time of my sacrum to get better views of the fractures. Unfortunately, there’s really not anything more we can do except rest and manage with pain medications.

One way to cope with plans and outcomes being different from what you expect, is to focus on the positive and to make conscious efforts to participate in the things that bring enjoyment. My counselor posed this question to me after we found out about the new pelvic fracture.

“What are your hobbies?”

This made me want to cry. My list: Writing, Sitting on my patio and studying the Bible, Reading, Gardening, Playing with the kids, Mowing the yard, Going to the prayer room, Walking around gardens/parks, crocheting. Are you thinking many of these are things you can do without needing to walk? They are; however, when you factor in the exhaustion and the effects of the pain medicine on my focus even writing and reading are things that I have to do when my mind is clear and able to focus for more than five or ten minutes.

As I’ve been processing through my recovery not being what I had made it up to be in my mind, my homework has been to engage in the hobbies I can still do. My writer and teacher friend, Elizabeth, asked me at about the same time if I’d hostess an online FB party for the makeup she uses. I said sure, but wasn’t looking at benefiting from it. I was doing it to help her out and maybe try one product. She had been raving about the mascara. Well, I started looking into their products because I have such sensitive skin and eyes. It makes it difficult for me to find any product I can stand to wear and not have a reaction to. Younique is it. Right there on the page with the product is every ingredient and why they put it in the makeup. I fell in love with the makeup and learning (at 37) how to really do makeup. I thought it was going to be a chore, but instead it’s become a new hobby. It’s one I can do physically and spend as little or as much time in as I’m capable of spending. The best unexpected result is a group of ladies who know and act as though beauty comes from the inside and makeup is something we do to accessorize our beauty and express our individuality.

So what are your hobbies? What have you been saying “no” to out of fear or human judgement? Is God knocking on your heart to open up to unknown possibilities?

God promises in Jeremiah 29:1-141 to prosper you. We have to trust and keep hope. “For I know the thoughts that I think toward you, says the Lord, thoughts of peace and not of evil, to give you a future and a hope. Then you will call upon Me and go and pray to Me, and I will listen to you. And you will seek Me and find Me, when you search for me wiht all your heart. I will be found by you, says the Lord, and I will bring you back from your captivity; I will gather you from all the nations and from all the places where I have driven you, says the Lord, and I will bring you to the place from which I cause you to be carried away captive.”

He WILL. Not he may. He WILL.

Cushing’s at 5 weeks post op

(Disclaimer: Hi! Just a reminder, this is essential a diary/journal-type entry in my Cushing’s Disease recovery. It contains thoughts, complaints, pictures, etc. Cushing’s is rare and affects so few. For this reason, I wanted to put my journey out in hopes of helping others who might be going through this as well. I also do very little revision/editing to keep it authentic.)

The last two weeks have been about perspective and patience and strengthening my spirit in 2 Corinthians 4:13-18. It’s about the gratitude, the witness of a strong spirit despite physical suffering, and faith.

So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day… as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.

2 Corinthians 4:16-18

Perspective practice #1: We are five and a half weeks into the remission/recovery phase of the surgery. Weight loss is still avoiding me, but I haven’t gained. (by this time, it could have been possible for me to gain another 30, 50, or 70 pounds). I think I see a difference in my face. I can see a more defined jawline coming out. What do you think? (I HATE smartphone cameras and selfies. I do much better at photos with a SLR.)

Here’s my face, but also some skin on my stomach where I had what I thought were stretchmarks, but it’s purple lines that show up as a result of the tumor.

These are my pre surgery/in hospital post surgery photos of my face and my skin on my stomach.

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face six weeks2

skin pre surgery

skin at 6 weeks

Perspective practice #2: We saw the ENT on Wednesday. The sinus cavity and nasal passages look good. She says it’s healing nicely. She cleaned out more packing, estimating there’s only about 5% left up there. I am breathing better than prior to surgery and the sinus-type headaches have stopped.

Perspective #3: I’m getting to try out what it’s like to need and use the emergency dosing of hydrocortisone while still restricted on my activity level/work. This whole remission/recovery/regulation stuff seems like it could be more exact and efficient. So I had some stressors (Sick dog, news that Chris will need another stent in his pancreas, ENT follow up, sinus infection, tornado warning/bad weather) this week.

Perspective #4: While the fatigue has continued, its affects are wearing me out more. So, I make lists. Lists make me feel like my good ideas and intentions are active members of my family. Here are two from the last two weeks:

Things I still haven’t had enough energy to do: church, grocery shop, go for a walk around the block, work, any sort of project that requires sustained energy/focus, pull out the summer clothes and sort through them, and do any sort of spring cleaning (this may be the biggest disappointment out of them all).

Things I was able to do this week: eat out at Panera with my family, go for a ride with my parents around Lake Jacomo and Blue Springs Lake to enjoy the red bud trees and sunny warm weather, complete reading two manuscripts I am editing, finish reading two books, water my houseplants, sit outside on our patio and read, make meatballs for dinner one night, and make it to and from a doctor’s appointment.

This week marked that six-week post op when supposedly things flip. My physician’s assistant from the neuro office says she has had many patients say that at week six, it was like a switch was turned on and they felt much better. I would say I had moments where I felt somewhat normal (if I even know what that is), but I still have days where I cannot get out of bed and sleep most of the morning.

Journal Update 4.15

Good evening! (as I typed that I heard the Count from Sesame Street saying it instead of me.)

I figured it was time for an update. This week I have had to battle discouragement. Discouragement because I’m still feeling tired, but more in not seeing weight loss or the fading of the purple marks on my skin. I still have “moon face”. On top of this struggle, I had several appointments this past week and it wore me out.

The Run Down:

Monday: afternoon doctor appointment

Tuesday: Chris doctor’s appointment; Fourth Grade Wax Museum 5:30-7 pm

Wednesday: afternoon doctor appointment, stopped at Kauffman Garden

Thursday: 2.5 hour visit to GP’s office; The Fellowship Band practice

Friday: The Fellowship Band practice

Saturday: NOTHING

Sunday: Church; Fundraiser for our friend, Nicole

The Details of it all:

Wednesday at my doctor’s appointment, they checked on my nose/sinus healing.

Actually, by the time we got down to the Plaza, I was tired and wanted to be in bed. I am grateful we didn’t have to wait long. In the room, we got vitals and recorded. The doctor arrived lickity-split. We do the usual back and forth about how I’ve been and about how successful the surgery was. Once she has me relaxed and confident in my progress, she pulls out two long skinny probe looking things. She sticks one up the nostril and the other one is a microscope or something. She was pleased with the inside of my nostrils. However, she did trick me.

The nurse comes back with a release form for the procedure to pull out some packing. Yes the packing is dissolvable, but she wanted to remove some. While there was a release of pressure in my sinus cavity, it still hurt to have it pulled out. When she clamped onto the mass and started to pull it slowly, the ripping of its adherence to my tissue made me cry. All I could see was the weird probe and her forceps.  The packing looked like a prune in color and size. I couldn’t believe she was able to pull that out of a nostril. I joked about taking a picture, but decided we should spare everyone that sight.

Despite my fatigue, I couldn’t let it get in the way of the rare Missouri day. Our spring has been cold. It’s actually snowing as I type. So the 80 degree, sunny weather told me to ask to visit the Kauffman Garden. We pass it on our way home. I was able to walk around a little. We went inside the green-house type building, smelled the flowers and I got to pet the resident cat. Most of the flowers still hadn’t been planted, but could be enjoyed inside.

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Some of the flowers waiting indoors to be planted in the beds at Kauffman Gardens

By Thursday morning, my body was worn out. I was tired. I had no drive to get up and even walk to the living room, but I needed to follow up with my GP. She needed to check on my blood pressure and I hadn’t seen her since I received the Cushing’s diagnosis. It was a long wait. They were running behind. I had a lot of information to update them on. The good news is that my blood pressure is running on the low side of normal. If it continues to trend low, we can start taking me off of meds for hypertension.

So it’s been pretty much more of the same. I’m tired most of the time. My fractures don’t feel any different. I sleep when I can and dab at my nose to avoid blowing.

Have a great week!

-Crystal

 

 

Welcome Walker

I love most of the Facebook polls. If you were a teen in the 90s, do you remember the polls and quizzes in magazines? My friends and I would wait anxiously each month for latest issues of Teen, Seventeen and others. We put all of our stock into those quizzes and the truth of the data presented in the polls. I had been taking an inventory or collecting poll data myself for at least a year about the different pieces of DME (that’s hospital talk for durable medical equipment. It’s the category everything from adult diapers to mobility devices fit under). The results were inconclusive. The Walker and the cane and the crutches seem to be at a tie on which will bring the best mobility while alleviating the most pain.

Many of you know Joe and Bob.

Joe and Bob stand in rebellion of their directive to be retired.

They are the twins (crutches) who joined our family in August 2016. Before discharging me form the hospital, my doctors ordered a couple of visits with the PT (physical therapist). They wanted to check on Joe and Bob’s ability to continue to be support and pain relief during my recovery. However, I’m still not convinced they felt the gravity of the limitations of my fractures. They had to take into consideration my new restrictions, specifically “no bearing down and/or straining in any way.”

Joe and Bob stand in rebellion of their directive to be retired.

 

Joe and Bob supported me through all of this limited mobility crap. You don’t know how inaccessible the world is until you’re mobility is taken away. Bathrooms, doors, weather, crowds, aisle width all need to be taken into consideration when you determine if you’re going to go out. But Joe and Bob were unashamed, strong, unbending, although they caused the occasional armpit bruising. They are helpful in reaching across the room to turn of the light and scoot something you’ve dropped closer to you so you don’t have to get up to get it.

My PT suggested I go to the PT “gym” and try a walker, because Joe and Bob didn’t seem cut out for doing the job anymore. They needed a holiday.  It felt almost like a secret consipiricy between her and my orthopaedic doctors, who had suggested that it was my only other option that might bring me acceptable pain relife.

Well…I really fought my doctors, because I was already feeling old, run down and like I was on the downhill of life with the fractures, osteoporosis and other health problems. However, they all must have known that with the foggy brain from the surgery and the pain medicine, my guard would be down.

So I took a walker for a trial run out of the PT gym and around the floor. I was able to move faster and my laps around the floor didn’t make my lower back ache.

Here she or he is.  This is where the polling comes in! Are you as excited as I am? I need help naming Mr./Ms. Walker (I’m keeping the last name as Walker). walker

Nameless. She sits next to the bed to be used to help me get up and move around the house.

We’ve talked about names. We’ve discussed adorning her with duct tape, I personally joked about a white plastic basket with flowers and streamers like you put on a bicycle, but why not?

Now is your turn to help me out. Take the quiz below and help me choose a name and adornments for our new addition.

What's My Name? (It will keep the last name "Walker")

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What should I decorate my walker with?

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2 Weeks Out: Journal Update

I have received many texts, messages and cards asking how I’m feeling.

I answer truthfully, “I feel like crap. I’m exhausted and sleepy nearly all of the time and I have a headache that feels like a sinus headache. At its best, it only hurts when I move (this includes just moving my head up/down and left/right).

The looks I get when I tell someone this face to face are more than surprise. It’s shock. I’m not sure if that’s because in pretty much every surgery/procedure the expectation is that the patient’s quality of life and overall health should be improving. So after they close their gaping mouths, or if I’m responding via written communication, I let them know I am grateful, but this was as is to be expected.

Even I have to remind myself at those times when I’m feeling exceptionally run down and in pain, that this is what we want and it is what is expected for at least the first six weeks after the surgery AND I should expect it every time we step down my medicine.

Other ways my life is altered right now is the fact that I have to go to the bathroom every two hours. I’m releasing all the water I’ve been retaining due to the tumor. sleeping flat, on my sides, or on my stomach are only tolerable for a short time, if at all. No bending, stooping, straining or bearing down. I cannot sneeze/cough. If I have to i need to leave my mouth open. I cannot bear down or do any straining at all.

So, two weeks out my recap:

I’m still tired; but can only sleep for about 2 hour blocks of time before I need to get up, use the bathroom.

Headache is still hanging on and I have times throughout the day where the severity is as bad as it was a few hours post surgery.

My ice pack is still my favorite bedtime companion. It relieves a lot of the pain in my head.

What other questions do you have? Today i have my follow up with the ENT. Praying for good things and for her to see healing.

In two more weeks, I will update you maybe with some pictures of changes that are taking place as my body remembers what it should feel like with out the stress hormone at sky-high levels all of the time.

Lastly, I want to thank everyone in our home group, The Fellowship, our church family at Cornerstone, and my other friends who have been a source of physical, mental and spiritual support. The group who deserves a big shout out is my work family, Moreland Ridge teachers and staff. Today I was surprised with gift cards and gluten-free snacks to aid in my recovery.

Please take and receive my heartfelt gratitude for each one of you who have reached out, prayed, and read my blog. You all are important to my family and me.

 

Blessings,

Crystal

courtesy of “Today 20 Minion quotes” Follow the link to see it on its orgiinal site. https://bit.ly/2IJFZsf

 

Cushing’s Surgery Photo Essay

We arrived at the Marion Bloch Neurosurgery Institute at St. Luke’s a little before 6 AM. The nurses were ready to see me. Excited, kind and fun they made the prep ahead of time peaceful. I was accompanied by my cheer squad: Mom, Dad, Chris and the kids. They let everyone come back and wait with me in pre-op and they were all able to be there while each of my doctors came by and talked about the procedure and answered any questions. Afterwards, I had some trouble with keeping my oxygen up, so I spent a little extra time in recovery and then made it to my room, N215. I had the best nurses and nursing assistants. I am putting a little slide show on–the week in pictures.

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Countdown: 2 Days

At 6:00 AM Wednesday morning, I will be rolling up to the sliding doors inside the parking garage attached to the neuroscience’s institute. I’m having near brain surgery. They will do this transsphenoidal procedure to remove a tumor or maybe it’s two from my pituitary gland. “Near brain surgery” echos in my head at random moments throughout my days. Reverberating from the walls of my skull.

Time flies. I didn’t expect it to.

We are all anxious at the unknown. It seems like I just got put on restrictions and FMLA due to a new injury in my hip. It felt like the surgery would never get here. We had to wait to schedule it because my doctor was going to China. Good reason to wait. We definitely didn’t want to have the surgery right before he left the country, so March 28 seemed like an eternity.

In the meantime, I had more tests done and pre-surgery appointments with doctors. The doctors educated us and armed us with what to expect, but I try to keep my distance from it, so I don’t start playing the what-if/worst-case scenario game (for my This Is Us watchers). But now, it’s only 5 days away. I have to pack a hospital bag. Plan for dog-sitting, kid’s lunches, bills are paid and listed where Chris can find them, passwords, account numbers are updated. These last two or three days, I have had to play the what-if I am not able to take back up all of my responsibilities at home. Is Chris prepared to do those things?

What has worried me more is my kids making it through. Yesterday I got my answer for both kids. Each answer coming in one-one-conversations. I didn’t push, I waited and in the right time, they both came to me and opened up. And the concerns, thus the plan for them to deal with their fears and anxiety is different for each of them.

My daughter has been anxious about the surgery, because she “doesn’t want me to change.” When we asked her what changes she thought would be bad, she couldn’t think of any. A couple of days later, I asked again. I asked her to think about and write down or let us know what change she was anticipating that would be negative. I just needed to give her more time and also permission to explore those thoughts. She needed a person who would be there, if they got to be too much.

When you hear from your kid that the deterioration she has watched you go through for two years say, “I don’t want you to change”, you wonder what she thinks is going to happen. Is she scared of me dying? Being worse off than I am now with walking/caring for them and myself physically? What could possibly outweigh getting rid of chronic pain, stopping the brittle bones from progressing, and losing weight?

Chris and I have been vigilant about not discussing most of my anxieties in front of the kids, so we were confused by what she could want to stay the same. Then she wrote me this letter. Here’s a snip of the first page.

This child has a heart of compassion, love, and creativity that never stops surprising. (Plus I had to add the picture, because she proofread it and revised it before giving it to me. No final copy, but that’s okay. Her mom must be a writer and an ELA teacher…I was proud of her. I think her grandma, also a writer, would be, too.)

Throughout January and February, I was processing through having an actual reason for brittle bones, fractures and the rest of my diseases that are actually symptoms of Cushing’s Disease. Allyson is hypersensitive to other’s needs and emotions., yet my “stuff” didn’t distract her. As I was processing, she managed her own anxiety, started public school for half days, and, then to our surprise, won the January Optimist Club 5th grade Character Trait Student of the Month.

This girl is capable of achieving everything she wants to. Last fall, she really wanted to enter the Reflection’s contest at school. I was again skeptical. I know how talented she is in creating art (I could brag on it and post pictures, but that’s for another day’s reflection.) When she brought the contest information and application to us, I tried to help her think through what she could create that would relate to the year’s theme of “Within Reach”. I felt our discussions were unsuccessful. It was like I was speaking French and she was using American Sign Language. We could not come to common understanding. I didn’t really encourage her at that point. I was frustrated. I didn’t want her to get hurt by submitting something that wasn’t on theme. I didn’t want her to bomb. Her art is so good, I didn’t want to see her discouraged from it.

But in my release of the process, she made something with glitter gel pens that won her 2nd place for visual arts in the Special Artists category at her elementary school. Her picture went to the state level to compete.

This past week, she received a letter letting her know that her artwork was selected to receive Honorable Mention at state level for visual arts in the Special Artist category. (That’s sixth place out of all of the submissions from the entire state of Missouri!) It’s worth repeating: This girl is capable of anything. When I reflected on these things from the last three months, I recognized how her concept of time is a gift. Yes, it still gets in the way of her having an understanding of how she relates to the passing of time. It is a tool for her in using her gifts. It makes her hypersensitive to passing of time and the need for extra supports in using her time/understanding how her day should/could go. What I’ve discovered through her accomplishments and living life is this: Time is relative and is not an obstacle to accomplishing something you want to do, try, or learn.

Time flies. Time stood still. Time is on our side.