Wednesday, February 1, 2017

Excerpts from a fibro life + current self care techniques.

Flare Splice, Christy Grace, watercolor, 2017

As usual, it has been a while since I have written. Not for lack of ideas or inspiration but for the normal wonky balance of family, health, life, and work. I wanted to give a little update, write out some of the thoughts I have been processing, and share some of my self care routine.

Note - this blog is my own experiences and is not a substitute for professional health advice or care. I am a tough lady so this is not meant to garner pity, but to share my life and work through things by writing them out.

In April 2016, I was diagnosed with fibromyalgia after struggling with pain that was more than what I was used to while being a mommy with endometriosis. Trying to be a good mom, wife, friend, artist, and more, all while living with two chronic painful and exhausting diseases was proving to be very difficult so I talked to my husband Mark and we decided together that something needed to change. I had to prioritize family and health first.

So, I stepped back from a lot of work and social events that took me out of the house. I needed to set up life so I could back up from things a little when pain and exhaustion flared and not be a huge imposition to anyone. As instructed by multiple doctors, I had to reduce the stress in my life, allow for rest, and make time for self care.

I still wrestle with the guilt and internal dissonance of not being the person I was or the person I thought I would be at this time in my life. I can not be as social or push myself professionally in the same way I have in the past and it is easy for me to slip into feeling like a failure or feel that I am missing out. To get through this, I have to recreate expectations for myself and reform the vision of who I really am and want to be when everything is stripped down. (More of this in the next blog entry.)

Since being officially diagnosed, it has been a weight off of my mind to know that it is not all in my head. It still proves difficult to explain the illness and to not feel ashamed because it is an invisible illness - I don't look sick. With endometriosis, at least I can display the pictures from the surgeries that show all my reproductive organs plus bowels twisted together with adhesions and cysts. With fibromyalgia, there is no way to show others that almost all stimuli is magnified and that this is painful, exhausting, and overwhelming.

Some friends have wanted to know more and I really, truly appreciate that. They wonder how it feels and it is different for each person but I wanted to put together an attempt to explain what's going on inside - a little look into how fibromyalgia personally affects me daily.

Excerpts From a Fibro Life

Can't fall asleep...can't fall asleep...mind is running laps and my hip aches. I can't touch my knees together because the pressure feels like a bruise. Turn over. Gah, my socks feel too tight. Get these things off me! Ok, a little better. Starting to drift off... "Mama! Mama! Up!" 12:45am. Toddler is up. Let's do this kiddo.
-
Finally, I get a few solid hours but the morning comes too soon. As found in a sleep study, I have "awake" brain waves during what should be my deep sleep. My body is not healing itself properly at night and even if I do get a solid 8+ (minus a wakeup from the kid) I am not well rested.
-
In the morning, I put my feet on the floor and it feels like someone had run them over with a truck while I was sleeping. My knees ache and I feel like a rusted tin woman. My body drags as it is full of sand, weighing down every step and making each action more of an effort. But there she is, Eliana with that sweet grinning face and wild, sleep-tousled hair and I smile and pull her little body to my chest for a hug.
-
Time to get going to music with Eliana! My back aches as I chase her around with her jacket then wrangle her into her car seat. Before we get going, I check the mirror to see if my eyes look as tired as they feel. As I drive, I almost call out in pain when suddenly it feels as though my fingers and palms are being bitten by fire ants. I look at my palms and they are normal. What the...?! I hold the steering wheel a little looser and bite my lip, chewing at the skin. Music is fun as usual though I inwardly sigh in relief when there are more quiet parts of the class when I can rest. I speak with a fellow mom while getting packed to leave and as I talk, I feel the fog roll in. I can't remember a simple word and stumble through the conversation, my eyes tearing up and my cheeks burning with embarrassment. If this was just a one time thing, I would push it off as "mama brain" but it happens all the time and it scares me.
-
After music, Eliana goes to Grandma's house. We hire her for chunks of time during the week so that I can work from home, get chores and errands done, and get to the gym. I think during this stage of motherhood, most mothers would agree that you wish for a second to get things done without the kid around but the second you are away from them, your heart aches. Anyhow, as I wave goodbye to her from the car as I leave, my stomach starts to twist. This is the IBS (irritable bowel syndrome) fun that visits almost every day, sometimes multiple times in a day. I rush home clenching. It may be because of endometriosis adhesions or scar tissue from adhesion removal but each trip to the bathroom is an event and hurts. Ugh.
-
After lunch, it is time to work but most of the time my body is telling me to crawl back into bed. Sometimes I do but I tend to be stubborn; "NO NAP!". I sit in my studio at my desk and get to it. I create new art, I edit recent work for apparel sites or prints, I get crafty by making magnets and necklaces out of my art for small shows, and sometimes I do some commissioned art or design work. Creating, drinking tea, and listening to music is one of my "happy places". There are days when creativity flows and I am on top of things and others where I can't keep my thoughts straight, my head and whole body aches, I yawn and stretch and twist trying to relieve that unrelenting pain. On rough days I will sometimes take a bath or nap but choosing to do those things means dealing with the inevitable guilt of not being productive.
-
By the time it gets to be near time to leave for a weight lifting class at the gym, I am dragging; but I know that though it hurts to work out, it hurts even more if I don't. I do my best to keep up and be strong. I do a few of the exercises with body weight or with lighter weights to minimize pain but otherwise I try to push where it is possible. Sometimes the bar feels like it is ripping the skin off my palms. Sometimes pushing anything above my head sends jolts of pain through my neck and shoulders. Sometimes a squat makes my hips feel like they are splitting apart.  Sometimes a lunge triggers shooting pain and strange sensations in the numb part of my right quad. Once the class is finished, though, I feel empowered and successful. The endorphins help, too.
-
I hop from the gym to pick up my little one. She is glad to see me and tells me by dancing around and singing "happy, happy, happy!". My heart explodes, of course. She follows this by smiling at me and saying "Up!"; I pick her up and hold her close. We push our foreheads together and I tell her "I love you, I've missed you, and I'm so happy to see you". Though my body still aches, moment like this help me reprioritize my thoughts. I want to give her the best of me.
-
By the time the day is done and the little one is bed, I am so tired but also would just like a second to relax and talk with my husband a bit. I ask for a hug and he holds me tight but it feels like his fingers are bruising my skin so I step back. I feel bad that my body is so sensitive and he feels bad that his touch hurt me. So frustrating.
-
Most days of the week are similar variations. The weekend hits and I am excited to spend time with my family but also a little nervous because chasing a toddler all day can be just as exhausting as rewarding. Luckily, my husband parents with me and he has a lot more energy. He notices when I am wearing out and takes a turn chasing her around while I have a cup of tea or a bath.
-
Sundays: we have church and Mark and I are on the worship team. He plays guitar and I play bass and sing. Though I love being a part of the music and I don't want to stop, some of the experience can be personally stressful. Sometimes the bass feels so heavy and the strap digs into my collarbone, which is one of my many tender points. I worry that I will forget the words or where we are in the song when the brain fog rolls in, and it has happened before. I get nervous about singing and when I lead a song it can feel like my throat is caught in a stranglehold and I worry whether any sound will come out. Sometimes I am having a good day and things are not so bad but if I am having a rough day, by the time we are in the car on the way home, I can feel the impending stress triggered headache. I have described this to my friend as a metal plate in the middle of my head pushing forward toward my eyes. There is a lot of pressure and tightness. If the headache is still around by the time I hit the gym in the afternoon, I try to relieve it between muscle groups by pushing my hands against my skull.

---

So, as you can see, not a charmed life physically but if someone asks my how I am doing, I usually say "Life is wonderful but my body could be better". There are so many lovely parts of my life that I try to celebrate and focus on to be able to live with daily pain and keep my thoughts positive. Constant pain and exhaustion can take you to a dark place very quickly so I work hard to keep my head above water. I have slowly been adding and adapting self care routines to help with this.

Current Self Care Techniques


Moving my body -
I am still doing Body Pump three times a week as long as my stomach issues don't get in the way. I miss the nice weather and walks with Eliana so I had to find a way to replace those steps I was missing with the cold weather. My Fitbit has been helping me keep active. The little 'buzz' on my wrist once an hour reminds me to get up, stretch, and walk around. This is especially helpful when I am working because I get absorbed in a painting and don't move from my chair for four hours (which then makes my joints feel like they have rusted). I am trying to get 10,000 steps a day and will pace around the house after I get the babe down to sleep just to reach that goal or get near it.

Massage -

Getting a massage from another person has always made me nervous. Though I am sure it would feel great, I can't get past the idea of a stranger's hands on my body and wouldn't be able to relax. So instead I use tools to massage myself. My friend gave me a fascia massager after I mentioned doing research on how fascia could affect pain levels. I use this massager plus an octopus shaped massager (yay!) with avocado oil plus some essential oils. After I dry brush my skin, I warm up by using a space heater to add to the effects of the massage. When I started these massage sessions, it felt like I was punching my tender points and that pain would pulse long after I released the pressure. Though the pain is not gone, the massage has definitely helped reduce sensitivity. I sometimes follow up with an epsom salt bath to help draw out toxins released during the massage and I make sure to keep well hydrated.

Medication -
I am still nursing Eliana (if possible, nursing until age 2 is recommended now for toddler immune boosting and I was and am planning on letting her choose when she is ready to stop). This means that I can't take any strong medications but I am taking a low dose of an anti-depressant to help with pain and to assist in combatting the expected depression that people with chronic illnesses experience. I am also seeing my friend that is a homeopath. I love the way that she listens and approaches the body and illness holistically.

Soul care and small joys -
I pray, I worship, and I sit still and listen for God. I know meditation would be good for me, too. I have read the book You Are Not Your Pain about mindfulness and would like to start implementing those tools into my routine. Small joys are moments that are full of peace or a bliss that can momentarily distract or eclipse pain. I find these joys in times with my daughter and husband, when I create a new piece of art and it actually looks close to what was in my head, when I sit quietly reading and drinking tea, when I make someone smile or feel appreciated.


Still simplifying life -
Many times simplifying life means saying "no, thank you" or "sorry, I can't". There are so many good people with good ideas but when you are struggling to take care of your own stuff, it is not right to take more on and then drop all the plates that you are trying to spin. One of my little mantras currently is "gently set down that plate". Simple, yes, but a way of saying that it is okay to realize when things are too much and taking care of business well means letting someone else do that job. SO hard for me to do but as I set these plates down, I feel the tension start to release. My introvert self is grateful, too!

Letting it out -
And we've now come full circle. From experience, I have found that it is better to work through these complex and somewhat confusing bits of life. Write it out, paint it out, talk it out. It makes you and your illness feel not so invisible, which is cathartic in and of itself.

Thanks so much for reading!
Love, Christy



Saturday, July 16, 2016

God Has Answered

A dear friend was asking about some of the spiritual things I went through during our journey to pregnancy so I started writing. I have trouble not telling a story in full, so it got a little long but I did my best to give a succinct recollection. <3 Thanks for reading!

-------

In 2011, Mark and I took a 'babymoon' - a trip together before trying to start our family. I was so ready. I drew and painted cute baby animals and researched all things baby. I excitedly told my Bible study friends that we were going to be trying and I prayed that my marriage with Mark would be strong and would grow during this process. I was full of hope and expectation.

Six months went by, nothing yet. I was a little concerned and went to visit the doctor. I was told that "these things can take time" and that I should not worry until a full year goes by. I noticed some physical pain creeping in but just thought it was because I was off birth control. I continued to pray and so did the women close to me as I tracked my cycles and researched as much as I could to help.

A year went by and I went back to the doctor. They did a painful test called an endometrial biopsy - pretty much a few hole punches inside the uterus to test the lining. That came back inconclusive and I was given the advice to keep trying and to try to not be stressed as that could be keeping me from getting pregnant. The painful periods continued but I did not think that was part of the problem yet. My friends still prayed.

Two more long years went by. I talked about it less and people asked if we were still trying. My prayers turned from asking for a baby to asking God to do show me what was meant for our family. Maybe I was not supposed to be a mother; maybe we were supposed to adopt; maybe our marriage wasn't ready for a baby; maybe there was something in my life I had to fix before I could conceive. I hurt a lot - emotionally, physically, and even a little spiritually.

I returned to the doctor because by then my physical pain could not be ignored. I almost fainted during work and was in pain or uncomfortable for at least three out of four weeks of each month. I had done some research and presented my doctor with the idea that I could have endometriosis. They had to do surgery to confirm and yep, there it was, stage 4 endometriosis with an unlikely chance of pregnancy.

Endometriosis is where the endometrial cells, the same ones that line the uterus and make a home for a baby, grow elsewhere in the body, usually in the abdominal cavity. They go through the same monthly process but when the lining sheds each month, the out of place cells have nowhere to go and end up causing inflammation, cysts, adhesions, and scarring.

The doctor found that my ovaries were surrounded by cysts and were adhered to my uterus which was also stuck to part of my bowels. No wonder I was in pain and no wonder I couldn't get pregnant! I had a second surgery to remove what they could while doing the best to leave the reproductive parts in good shape. During this time, I was surrounded in prayer more than ever. I was supported wonderfully by my friends, church family, and amazing husband. People prayed, brought food while I healed, and sent kind words.

The next stage was fertility treatments to help get me pregnant before the endometriosis grew back (there is no known cure). The trick was that some of the fertility medicines had hormones which made the endometriosis grow faster so it was a race to see what could win. We were told that we would have about three months to try before they may have to do surgery again. I had people praying, I talked about the process in Bible study, and I was full of hope!

The first month failed and I stopped being so open with the process. A negative was hard on Mark and me and telling people that had prayed so diligently for us that it didn't work was just as difficult.

The second month failed. So did the third. This was around four years since we had started trying. I was in a very dark place. I asked God for some kind of answer. Why would He create me with such a tender, nurturing heart and not fulfill my wish to be a mother?

We tried one more time.
Ta-da!
It worked!
AHH! WHAT?!

Mark and I were full of wonder and a little apprehension. Would it stay? Would the baby be healthy? Would the pregnancy go ok? I told a few people that new the timeline and asked for them to pray that everything go well. Once we passed the 12 week normal waiting time, we let people know and I felt God's love in the hugs, saw Him in the happy tears, and heard Him in the joyful exclamations.

Time passed and even though it was not an easy pregnancy, I did my best to take it in stride and to rejoice in the miracle of the baby every day. At 20 weeks, we learned it was a girl and I started searching for names. Mark told me to make a list of ones I liked so we would have somewhere to start. I went through web sites and apps alphabetically, writing down names and the meaning of the name. I got to the E's and found a lot that I liked but one stuck out more than the others. Eliana. The meaning is spot on, too -  'God has answered'. I thought it was perfect and it didn't take much convincing to get Mark on board.

The pregnancy continued to have its bumps in the road but on June 10th, 2015, Eliana made it out safely, even narrowly missing a possibly fatal complication at the end. Thank God for prayers of protection!

And then there she was, this little one so many had prayed for - this brand new person that I would have the chance to get to know, to protect, to nurture, to encourage, and to love. The first few weeks it didn't feel real. I would stare at her sweet, squishy face with disbelief.  My heart ached while thinking about what could have been if it hadn't worked and the pain of those that might still be waiting for an answer. My spirit started to heal from the rollercoaster it had been on through this experience when I decided to be content in a spirit of gratitude.

Eliana is here. God has answered in this way and I am so thankful.





Friday, June 10, 2016

Dear Eliana - The Birth Story

Dear Eliana,

I am writing to you a day before your first birthday. Memories of this time last year keep flooding back to me and I wanted to make sure to share them with you when you are old enough. I am sure as you know by the time you are reading this that your mom likes to go into detail, especially when it comes to telling a story or recalling a memory. Thanks for bearing with all the nitty gritty, somewhat gory but totally natural and miraculous, kiddo.

The week leading up to your birth was full of expectation. I had a sense you would be joining us soon. I had a friend take a photo of me, looking very pregnant, with my bass guitar. While you were being formed, you got to feel the deep vibrations almost every week while your daddy and I played music on the church worship team.
Rocking the bass three days before you were born.

A day or two before you came, I bought and ate some pineapple in hopes that this might speed your arrival. My joints were aching, my feet were swollen, it was difficult to sleep, I peed a lot, but most of all, I was excited to meet you. I couldn't believe how large my tummy had gotten and marveled at the fact that there was a living being, spine, eyes, heart and all right beneath my skin. I could see you move and would rub or tap the areas where your foot, bottom, or knee would protrude. Sometimes you even tapped back, moving in response to my touch. It was so incredibly fascinating.

Last belly selfie before you arrived.
We made it to 39 weeks, 3 days, and the size of a watermelon! This was painted on me by me. :)
Yikes! Marshmallow feet!

The hospital bag was packed about a week before your due date of June 14th, 2015, but I hoped you would come earlier. I even told you the the 11th sounded like a nice date. The night of June 9th your dad and I stayed up late together, most likely chatting and watching Netflix with a cat or two lounging on top of my tummy. As I got ready for bed I had a feeling that I should be prepared so I made sure to wear a pad. I'm sure I saw at least midnight on the clock as I rolled heavily from side to side.

Blue on my tummy.
Murphy on my tummy.
June 10th, 2015. 3am. My eyes popped open. Something was different. I sat up and felt a trickle. Uh-oh! I rush-waddled to the attached bathroom, my hands clasped together between my legs. I made it to the linoleum and mostly onto the toilet when whoooosh! There goes my water!

Once the whoosh slowed and I cleaned up a little I made sure there was no blood. While pregnant with you we had a few risk factors - the most scary being the possibility of vasa previa, where fetal blood vessels cross over the cervix (AKA your exit). When vasa previa is undetected and the membranes rupture, subsequently breaking the blood vessels, a baby can bleed out within minutes and have severe complications or die. We had a high risk ultrasound for this and it was ruled out but I was still on edge. Whew, no blood.

I sat there feeling blurry and bright at the same time. This was it. I was going to meet you soon. Better tell your dad!

I gently woke Mark by calling his name.
"Huh? What?"
"My water broke."
"Really? Tell that baby to stay inside. It's too early."

We made a call to the hospital and they told us to try our on-call doctor. I felt so bad waking her up but I got in contact with the doctor on call, let's call her Dr. S. She told me to call the hospital back and let them know I was coming in. Once the water breaks, they want you in the hospital to prevent infection, even if labor will last a long time.

Sometime during those calls around 4am, my contractions started as a soft, intermittent ache in my lower back. I leaned on the counter, swinging my hips a little as they started to get stronger. Your dad grabbed the hospital bags, loaded the car, and then we were on our way. My contractions continued in the car, all back labor, and were about 5 minutes apart.

Your dad dropped me off at the hospital door with our bags and went to park the car in the ramp. I stood there with a goofy, excited grin on my face. A man passed and asked if I needed a wheelchair but I was OK and happy to be upright. Your dad joined me and I waddled my way to the labor and delivery floor, stopping here and there as I waited for contractions to pass.

The check-in was not the most fun. The nurse at the end of her shift seemed tired and annoyed with me when I paused in answering her questions for a contraction. "It's just going to get worse" she quipped. They were also asking me if my water really did break or if I may have just peed myself. We heard a woman yell down the hall, "Does anyone even work here?! Someone? Anyone? I need help!" That nurse rushed out to help her. Your dad and I were a little frustrated then but understood when we heard the woman had her baby just an hour later!

The cherry on top was when Dr. S arrived to check my dilation and remarked that I was only open "a lady's pinky finger". She told me that we should start pitocin to hurry along labor because my water had already broken.

They moved us to the delivery room and a new nurse came in at the shift change.  She seemed seasoned and steadfast, which brought me some comfort. I changed into a hospital gown and she hooked me up to an IV that started a drip of pitocin. Almost immediately the contractions intensified and I looked for a trash bin because I thought I would throw up. They turned down the amount because it seemed that my body was very sensitive to the drug.

From 6am-2pm things were pretty consistent. My contractions were still every five minutes but came in doubles (called coupling) as a result of you facing up instead of down, though we wouldn't find that out until later. Nurses buzzed in and out to check on me and to make sure things were progressing. In my birth plan, I wanted to sit in the tub but that wasn't recommended with an IV. I also wanted to try squatting but your heart rate decelerated a little when I got into that position so that was a "no go" there. I mostly sat on the bed or in the rocking chair listening to the Massive Attack Pandora station and doing my best impression of a Zen woman in labor.

Your dad was attentive, caring, and I am sure, a little bored. He paced back and forth in the large delivery room. I could sense his nervous energy and hear his footsteps. "Sweetie," he asked kindly, "is there anything I can do?"
"Um, stop pacing?"
Haha, your poor dad.

Around lunch time, your dad got very hungry but he felt bad about leaving me. I told him not to worry and to get some food but not to get anything that had a strong smell if he was going to come back to the room with it. During labor, I was not allowed to eat on the chance that I would need a c-section. Food plus surgery is not so good. Needless to say, I was hungry and when your dad walked in the room with a to-go container of chicken fingers my stomach grumbled. Being pregnant amplifies the sense of smell and for a while, that smell was overwhelming! He ate around the corner near the hallway door and tried to waft the smell away from me.

Shortly after lunchtime, I asked for a little pain relief because I was so exhausted and the double contractions were taking a lot out of me. Part of my birth plan was to try to go without any pain meds so I felt guilty but the nurse immediately squashed that guilt and told me I was doing very well. They administered a shot that would take the edge off the pain and would only be in my system for two hours. While it didn't do a lot for the pain, it did make me sleepy and I was able to snooze for a few minutes between each contraction.

Sometime earlier that morning, Dr. S had finished her shift and Dr. M took over. He visited me a few times, left for lunch, and then came back. He watched as I worked my way through a contraction. I rocked quickly back and forth in the rocking chair, eyes closed, imagining my cervix opening like a flower, and breathing out in long breaths through pursed lips. He said I was a natural and that made me feel good and strong (even if he does say it to all the laboring ladies).

2pm. Dr. M checked how things were progressing. You were still sunny side up but I was more dilated so the doc said to push a little with each contraction if I felt the urge. This is where things started happening quickly. A few times, when I pushed, your heart decelerated a little so they began to set things up for a "just in case" c-section if you wouldn't rotate. I didn't want this at all so I did my best to remember what helped turn a baby from some of the birthing books I had read.

I went to my knees with my arms resting on the upright part of the hospital bed. This is when a student (teaching hospital) came in and tried to take my blood. Since my arms were up, there was not much blood to veins near the crease of my elbow. The student tried a couple times before my husband interjected and had them bring one of my arms down. I was a little distracted with the quickening contractions so I just did whatever they asked.

After they got the blood, I turned on my left side to rest a bit and then flipped back to sitting when it was time to check your positioning again. You had turned! Once you were facing down, my body knew what do do and you started crowning quickly. This burned a little but mostly, it felt like you were stuck. Dr. M had me put my feet up in the stirrups, handed me a mirror, and had me look at the top of your head. Wow.

Your dad stood at the top of the bed near my side and helped me count when I pushed. I was having trouble finding the right way to push because I had been letting my breath out the whole labor and now had to hold my breath. Dr. M placed his hand where I should focus the pressure of my pushes. By then my whole concept of modesty had gone out the window so I voiced my thoughts openly, "It feels like my butthole is going to explode!" Yeah, I said that. This is the beauty of birth, kid.

As your head was closer to coming out, Dr. M offered the mirror again saying that your head was petite and I shouldn't tear. I said no thank you this time. I just wanted to get through this part! The contractions came closer and closer together and I quietly did my best to push the right way, my face red and cheeks puffed out as I held my breath. Then I screamed.

Apparently, you had your fist by your face, just as we had seen in many ultrasound pictures, and as your head emerged, so did your fist. Ouch! One more push and the rest of your body was out. Dr. M picked you up by one arm and one leg, you gave a cry, and then he flopped you on my tummy.

You were born on Wednesday, June 10th, 2015, at 3:53pm, 7lbs 7oz, 19.5" after 12 hours of labor and 30 minutes of pushing.



And there you were - a little blueish-purple but pinking up quickly, covered in patches of white vernix, forehead wrinkled and eyelids puffy from squeezing through, and deep, navy blue eyes that connected with mine instantly. I smiled at you, said hello and that it was nice to meet you, gently touched your cheeks, and stroked your matted hair. I noticed the diamond shaped, chocolate colored birthmark under your right ear and giggled as I saw that you still had a little peach fuzz hair on your bottom and lower back. Your nose was an adorable squished button and your lips were small and doll-like. I studied your tiny hands and fingernails with amazement. I already loved you before I got to see your face but holding you in my arms just amplified that love.



The second you were out, I was flooded with relief and joy. My body relaxed and I took comfort in the sight of you: alive, healthy, and beautiful on my chest. I placed you near my breast to see if you would latch and you did! I was grateful for the distraction of you because what was going on below was not as pleasant. The placenta had to come out with some exterior squishing of my tummy and all the parts you had split while coming out, both up and down, had to be sewn back together after some numbing shots.

After Dr. M stitched me back together, he examined the placenta to make sure it was all there (a mom can get pretty sick if any is left behind). "Um," he paused, "Was there anything different about your placenta during your pregnancy?" We told them about the vasa previa that had been ruled out but with his questioning, I knew he had found something. "It's there, isn't it?" And indeed it was. Had the membrane ruptured just a half inch from where you exited, we would have had a very different day and outcome.

Clear vasa previa
We were all very relieved but I couldn't help but get chills thinking about what could have happened. If the diagnosis had been positively confirmed at the high risk ultrasound, I would have been on hospital bed rest from week 30 and have had you through c-section around week 35. Because you were there, all safe and sound, the placenta was fascinating both to us and to Dr. M. He asked if he could take it and show some of the students. We agreed and he paraded down the hall with my placenta. He took photos and sent them to me later. So crazy. Thank you for being alive, little one, and for coming out just in the right place!

Photo by Naomi Walsh

Photo by Naomi Walsh
The rest of our time in the hospital was a blur of kind nurses coming in and out, awesome friends and family visiting and celebrating with us, your first bath, hearing tests, figuring out nursing, and diaper changes. I remember feeling so happy but exhausted and a little lost at times. This was a completely new life we were beginning together and I was learning how to care for you to the best of my abilities. Your dad was very supportive and held you with pride and tenderness. He was a champ at changing your diaper and swaddling you (even though we soon learned at home that you hated being swaddled and had escape artist arms). He slept in the room with me at the hospital even though it was difficult for him to get comfortable and we had nurses popping in to check on us at least every two hours.

Your daddy loves you so much!
Pineapple boxers and hospital guest accommodations

Your dad is an amazing guy. He also rocks at making sure you are safe and sound in the car seat - just ask him sometime about how he kicked butt in baby class.


Such a tiny peanut; all safe and sound

I think I will have to write you a whole other letter about your first year with us! You have filled our hearts with a joy that we didn't know existed before you were in our life. After years of struggling to have a baby at all, you are an answer to prayers and a blessing to be with every day. I have really enjoyed remembering when you were born. We love you so much. Happy birthday, little squish, heart of my heart, Ellie, lil' E, little lady, Eliana!

Love,
Your Mama


One day old.


One year old. 
Sweet and curious.

Great sense of humor!







Wednesday, June 8, 2016

Fibromyalgia Diagnosis

The Diagnosis

In my post about frustrations with my body after pregnancy, I shared this chart that I had created to try to explain my pains to my doctors.




I still have endometriosis and I knew how those pains felt but this was much more. Parts of me felt bruised or sprained, my whole body ached like I had the flu, my jaw clicked, and I was exhausted beyond the normal fatigue of a mom, wife, and small business woman. I had IBS symptoms most days and skin rashes that popped up, most recently one on my face and that caused some self esteem issues. There were parts of my body that were tender and sore or shot bolts of pain when bumped. Some nights I tossed and turned because every position was uncomfortable and I couldn't even rest my knees together when laying on my side because that caused discomfort.

Bouncing around between multiple doctors, getting blood draws and x-rays so much that the insurance company called to ask if I had been in an accident, I finally got an official diagnosis from a rheumatologist. Before the exam, the nurse called and asked me pre-appointment questions. After the quiz, she told me that it had been a quiz to screen for possibility of fibromyalgia. After my appointment with the rheumatologist, that diagnosis was confirmed - on April Fool's Day. Nice joke, body :/.



Though I had been dealing with these pains for a while, having the official diagnosis was both freeing and upsetting all at once. I allowed myself a little pity party but then picked myself up and started researching the disease and what I could do about it.

Mayo Clinic Disease Definition:
"Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory, and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.

Symptoms sometimes begin after a physical trauma, surgery, infection or significant psychological stress. In other cases, symptoms gradually accumulate over time with no single triggering event.

Women are much more likely to develop fibromyalgia than are men. Many people who have fibromyalgia also have tension headaches, temporomandibular joint (TMJ) disorders, irritable syndrome, anxiety, and depression.

While there is no cure for fibromyalgia, a variety of medications can help control symptoms. Exercise, relaxation, and stress-reduction measures also may help."

I grabbed these graphics from Pinterest to simplify but you can also check out this WebMD slideshow. This Doctor Oz series was also helpful in summarizing the disease.



The rheumatologist also sent me a packet explaining fibromyalgia and the common symptoms. As I read through it, I thought, "Yep, that's me, and that's me, and that's me, too". My body was such a mess of symptoms that it was difficult to explain, but this diagnosis brought most everything under the umbrella of fibromyalgia or endometriosis.

Having this diagnosis has brought me a lot of peace mentally. I now can confirm:
It was not in my head.
I am not crazy.
I am not lazy.
I am not weak or overly sensitive.

---

So, what's next?

Fibromyalgia is a chronic illness of the central nervous system so it is not just going to go away, but there are things I can do to improve my quality of life.

Medication
Antidepressants are often prescribed even if the patient is not depressed because antidepressants can be helpful in relieving fibromyalgia pain and improving deep, restorative sleep. They work by balancing serotonin and other brain chemicals involved in pain processing. Currently, Lyrica, Savella, and Cymbalta are the most prescribed to help with fibromyalgia. My gynecologist also told me about LDN or low dose naltrexone which helps reset the brain at night. A lot of these medications are not recommended to use while breastfeeding but I was put on a low dose anti-depressant that is safer with nursing and will look into stronger medication options once Eliana decides to wean. Until then, I am concentrating on other coping mechanisms and lifestyle changes.

Exercise
Though it often hurts to move, it hurts even more to not move. Inactivity can cause even more pain and tenderness so it is important for me to get moving every day. With fibromyalgia, stress can trigger a flare so it is a good idea to find a balance. Though it's not helpful for me to do high impact exercises, I have been taking a one hour weight lifting class 2-3 times a week and going on fast paced stroller walks in my neighborhood 3-4 days a week. I still need to work in some yoga, swimming, and tai-chi type exercises.

Pump it up!

My strolling buddies.

Diet


Search ResultDiet

It has not been proven that certain foods can adversely affect a person with fibro, but it has been shown that those who keep a healthy/fresh food diet do have less severe symptoms. I already have this down for the most part because of my food awareness from endometriosis. I need to keep up my intake of fresh produce and it'll be a little easier now because my Community Supported Agriculture (CSA) has begun. Yay local veggies!

Mindfulness/Meditation/Prayer
Mindfulness is often recommended to people who deal with chronic pain. It is a way of rewiring how your mind reacts to painful stimuli. I have begun reading the book, You Are Not Your Pain by Vidyamala Burch and Danny Penman and soon in will start taking me through meditations on CD. I am excited so see how this, along with prayer, can help.

Sleep
This is a tricky one! Many that live with fibro have issues with non-restorative sleep. I am in that same unrestful boat. A sleep study was done a while ago and it was found that I have insomnia, restless leg syndrome, and that I have active/awake brain waves during my deep sleep cycle. This means that even if I am in bed for 10 hours, I can wake up exhausted without having had my body and mind healed during sleep. This is also tricky because I am a mommy of an almost one year old and when she doesn't sleep, neither do I.

My docs have recommended trying to find ways to make getting to sleep easier - things like no caffeine in the afternoon and no screen time an hour before bed. They also said that I might have to take more rests or naps during the day. This is not an easy thing to work into an already busy schedule - which brings me to the next point.

Simplifying Life

This may be one of the most emotionally complex changes I need to make. I like to make people happy, to work dependably and with quality, to pursue many artistic ventures, to support friends and family and make it to their events, to be strong and consistent. My schedule has always been a full one, even before my daughter came along, and trying to balance it all was extremely challenging, but I did my best to manage as gracefully as possible. Adding two chronic illnesses to the mix that each come with pain and exhaustion tipped that precarious balance and something had to give.

Recently, during one of the evening power strolls with my husband, I brought up what weighed heavy on my mind: priorities. What are the things in our life that take precedence? Our family and health came to the forefront of the conversation. Such a full schedule does not allow time for the self care that is necessary for me and having an unpredictable week and weekend schedule puts stress both on my body and our family. Since the birth of Eliana, my husband and I have been struggling to find time together and having me work weekends makes that even more difficult.

It turns out that the thing that has to give right now is my face painting work. Ask any professional face painter - the job is much more extensive than the time put in at the parties. The hours spent communicating with customers, learning the craft, preparing and cleaning the tools and products, and designing option boards all add up. The time painting is not the easiest on the body either. There are a lot of unnatural positions you put yourself in when trying to paint a moving/squirmy target.

Deciding to respectfully bow out of face painting is a very difficult decision. I adore the artistry, the amazing people I get to work with, and all the smiles I get to see. I have been painting faces for 10 years and it feels strange to stop but it is what needs to happen to create the kind of life environment that will be beneficial to both my family and my health. I will continue to create art and do illustrations and some graphic design, but these are things that can be done from home as well as scheduled around health and family needs. Once I publicly announce this, I will begin to change my web site, business cards, and social accounts to reflect the change. I have a few more gigs booked this summer that I will work but after that, I'll lovingly send customers to my fellow face paint artist friends.

---

What can I do?

Some of my friends who know about my illnesses have asked how they could help and that is so very kind. Thank you! Right now, there is not much I need but I will let you know if I do. The best things for me from friends and family would be patience, grace, and understanding. To assist with that, there are a few things that I would like for you to know:

• I enjoy my life and I am happy even though my body is not so great.
• If I am having a rough day, I may seem distracted or foggy headed. Please have patience with me.
• You can generally not tell I am sick from the outside but the discomfort is there almost constantly.
• I still am doing my best to enjoy every day and will work through pain; I'll smile and try to act like my usual self.
• I am still figuring all of this out but I am thinking positively and I am grateful for kindness and support.

Writing all this out has been a great way to process everything. Thank you so much for reading!



Friday, March 18, 2016

Being A New Mommy with Endometriosis



'It is Heavy, She is Light', watercolor, 2016, Christy Grace
As I write this, it is March 2016 and Endometriosis Awareness month. Though I am finally getting some time and have processed internally enough to rehash some of my endometriosis and surgery experiences, I wanted to give a current update.

-----

Sometimes pregnancy can change a woman's body enough that endometriosis will no longer be an issue. I heard this while going through surgeries and fertility treatments and I was wishing that would happen in my body - though that would be miracle upon miracle. This didn't happen to me but I am so very grateful for the blessing of our little girl, Eliana.


Oxytocin, the bonding hormone. Painting by Christy Grace

That said, I have been extremely frustrated in how I feel my body is failing me. Two short months after the birth of my daughter my period returned even though I was exclusively breast feeding. The pain, exhaustion, and digestive issues were back almost immediately and by month four, I was prescribed birth control pills to slow the spread. The birth control pills have a warning on them which states that they are not recommended for pregnant or breastfeeding women. I actually refused to take my first pack of pills out of fear that I would hurt my daughter somehow. I talked to the doctors and pharmacists and got on the lowest dose possible and finally started taking them when I was afraid the pain would eclipse my ability to care for Eliana.

Birth Control Warning Label
One of the reasons nursing women avoid birth control pills is the fact that it can lower the milk supply. I found that it affected me immediately and that caused stress which further decreased the amount. Ugh! I did a lot of research and found some supplements and food choices to help supply. I kept with it and, though it has been a roller coaster, I have been able to keep giving my daughter the benefits of breastmilk along with the bonding that nursing brings.

Along with the pain of endometriosis, I have started to notice other pains in my body. I feel like an old woman though I am now just 31. There are muscles and joints that hurt when they should not. Areas of my body and skin feel bruised and sometimes when my husband tickles me, it feels like his fingers are digging in way too deep. I am also exhausted (but what mom is not?) and I feel like my brain is floating in a thick fog. All of this has added up to the possibility of fibromyalgia. I have appointments coming up to look into that deeper. They first have to rule out other things. Through X-rays, the docs have already found the beginning of osteoarthritis in my right knee. Okay, that explains pain there but what about the rest of me?

Really, body? I don't have time for this.
I made this sketch for my docs so I would not forget anything.

I have been processing a lot of this through art and now through words and that has helped. I also have a group of moms, family, and church and close friends that will listen. I still have fears and hopes.

• I fear that I will not be a good mom. I'm afraid of missing out on the precious seconds of Eliana's life while distracted with pain, exhaustion, or mental fog.

• I fear my husband and those close to me will tire of the real answer to their "How are you today?" questions. I am already embarrassed to have complaints and to need help but I am learning to accept it; I just worry about being a burden.

• I fear what my body could become as I age, if this is 31.

• I hope that even though it is rough, I can be the tough lady that I am and work through the pain whenever I can.

• I hope my continuous work to improve my health through workouts, diet, and other self-care will make a difference.

• I hope to be able to keep up with Eliana as she becomes mobile and I need to keep her safe.

• I hope to be the mommy I want to be for Eliana - loving, kind, creative, fun, encouraging, and present.

• I hope to be a good wife, sibling, daughter, and friend to those close to me. Though I know self-care is important, I desire to not be a detriment to those I love so much.

• I hope to find the right balance through all of this, though I know it is a continuing journey.

I wish to always lift you up in so many ways.
Photo by Naomi Walsh. Matching hats by Kelsey Dolezel.
Thank you so much for reading/listening. I am doing my best to continue smiling and kickin' butt and am grateful for outlets like this for my words and art.





Tuesday, March 15, 2016

Second Endo Surgery - Adhesion Removal

It has been almost two years since my second surgery for endometriosis (endo). In my last post, I talked about endo, how I found out I had it, and my first surgery. This will be a recap of the second surgery and life around that time.

My last post was on April 10, 2014, and my surgery was on May 21, 2014. While waiting for the surgery, the pain continued to get worse. In general, I was in discomfort all the time and in pain three out of four weeks of the month. My teeth clenching through the pain at night ended up cracking my two back bottom molars so I had to get them replaced with gold crowns. No fun and very expensive.

I researched ways to feel better through diet and much of the "endo diet" advice I found discourages many yummy things. On the do not eat list: soy (this was at the top of the list as the estrogen in soy can promote endo adhesion growth), red meat, dairy, chocolate, caffeine, wheat, sugar, fried foods, and more. I did my best to make good food choices and simplified by mainly avoiding soy and wheat because when I did slip up with soy or wheat I could feel the pain level rise. It is a good thing that I love fruits and veggies!

The last week before the surgery had to be one of the worst. I had my period but because of the impending surgery, I was not allowed any pain medication. I remember driving hunched over to an art gallery to retrieve my art after Gallery Night. When I walked into the gallery, my friend saw me and her face fell. "You don't look so good." I was pale faced with a cold sweat and my eyes were tired and sunken. I made it home and immediately crawled into bed with my hot packs.


With this surgery, the doctor knew she had to remove adhesions from my bowels so I was prescribed a bowel prep. This involves drinking a gallon of solution to completely clear out your insides! A person is instructed to drink this the afternoon before the surgery and to stay near a bathroom. Oof. Let's just say that there were some moments of comedy even though it didn't feel so great at the time.

Go-lytely, go quickly, run, run run!!!

The morning of the surgery I was so excited! I am sure the nurses thought I was insane because of the smile on my face. Smiling is sometimes how I work through sadness, nerves, or pain but this particular morning, my smile was filled with hope. My sweet husband Mark was with me until they had to wheel me into the surgery suite.

I remember transferring myself onto the surgery table, counting down, and then the strange, foggy, floating darkness of general anesthesia. Waking up in recovery, the first questions I asked was, "is this the first time I am waking up?". I wanted to make sure that I wasn't too confused coming up from the fog. The next thing I said was that I already felt so much better. Even though there was some pain from the incisions, it felt like a huge, knotted mess inside me had been untied. Relief.


My doctor walked in and started to explain what she found when in surgery. Long story short, she said that it was like an endo bomb went off inside me. A cyst must have popped and spread the endometrial cells throughout my lower abdomen because she found a lot of new spots and adhesions. She said that sometimes this surgery was not too hard because there are different levels of severity, but after this surgery she was physically tired. She removed a lot and did her best to preserve my reproductive organs. I was pretty sleepy then but I made sure to write her a note later to tell her how I was grateful. I also painted her a picture of a blooming reproductive system using hibiscus, rose-hip, and dandelion tea. She wrote back and said, "Next step, pregnancy!". (That process will have to be a whole other post.)

Fertile Flowers painted with tea.

After getting home from the surgery, my cats could tell that I was in pain. My girl kitty, Blue, puffed up and sniffed me nervously. She ended up trying to comfort me by sitting on my lap which isn't the best spot for a kitty after abdominal surgery. We compromised by using a pillow in between us.

You okay, human?

The emotional after-effects were expected but still a little difficult. After resting a while, I got hungry and asked for a banana and peanut butter because I wasn't ready for a full meal. While eating my banana, I felt a huge rush of complex emotions starting to well up. "Mark," I said, "I'm going to cry but I am okay."

My recovery took longer than from the previous surgery but luckily I had a great amount of love and encouragement from my husband, my family, my friends, and my church family. They brought meals over and visited with me while I was healing. Thank you so much, dearhearts!

A week and a half later, I attended an art show. I was still healing and very tender but I wanted to be there to support my fellow local artists. A few friends were also at the show and exclaimed that I looked great and kind of glowed! It was surprising how fast my body was cleansing itself of the toxins that built up during my illness. Though I knew I was not cured, I felt better than I had in a long time and hopeful for the near future - both for feeling at least a little better and for the possibility of pregnancy!


Thanks for reading!

Wednesday, July 22, 2015

Weekly Produce Themed Painted Baby Bump


Many of you know the struggles my husband and I had on our path to pregnancy (if you don't, no worries - those blog posts are in the works). In short, after 3.5 years of trying I found out I had stage IV endometriosis. I had two surgeries for endometriosis and then we went straight into fertility treatments and procedures to attempt pregnancy before the endo adhesions grew back. When we finally did get that elusive positive test with the help of both Physicians for Women and Wisconsin Fertility Institute, we were in disbelief, quite a bit nervous but also full of hope.

I wanted to find a way to celebrate each week of the pregnancy as we went along because each week was a blessing. I was inspired by the fruit and vegetable size reference pictures on a few of the pregnancy apps I followed. Each week they would tell you that your baby is "now the size of an olive" or "as long as a bunch of swiss chard". I loved the references because they helped me picture the growth of my little one and made the miracle seem more real.



My artistic history is in fine art, graphic design, cake decoration, and face and body painting. I have painted baby bumps for other mothers in the past and thought I would try it on myself. At first it wasn't too challenging because I could look down and paint but as my tummy grew, I could only see the top portion of my canvas. I ended up using a swiveling mirror to view the area while painting. The paints I used are professional grade body paints with FDA approved ingredients which are very gentle on the skin and safe to use. After my loving husband would photograph me, I washed the painting off with soap and water. 




Mark, my husband, is a funny guy and would frequently make jokes while taking pictures. Once, when our baby was as big as an onion, he took a short video without telling me. The result gives a nod to the phrase "belly laugh".



As the baby grew and her movements could be seen externally, I began taking videos. When she was as big as a pumpkin, I took this one:



I wanted make it as far as the size of a watermelon which is 39 weeks. We just made it and our adorable daughter, Eliana, made her appearance on June 10, 2015 at 39 weeks and 3 days. We fall more in love with her every day.



Photo by Naomi Walsh

Photo by Naomi Walsh


Eliana with new book from friend, Ryan Haack of LivingOneHanded.com


Some more images from the project:








Thanks so much for reading and celebrating this life with me!
Love,
Christy Grace