This could be it.

photo-5

1/4 delicious fruit  + 3/4 greasy potatoes and onions smothered in ketchup = 1 delicious vegan diner breakfast (though not the healthiest… hehe)

It has been 10 months & 3 days of NO topical steroids, NO dairy, NO eggs, & NO gluten.  10 months & 3 days of a crazy roller coaster ride that has included some of the darkest, most difficult, seemingly hopeless moments and an achingly yet promising slow uphill climb to a better view.

img_7628

The beautiful view from a top of a small mountain that Kyle and I hiked on our day off.

While my bright red skin has faded, most of my itching and shedding have subsided (albeit my neck, scalp, and parts of my arms), and I can sleep like a rock once again, I still have the constant thought in the back of my head:

“This could be it.”   

Not meaning, “This could be it.  This could be the end of it!”, but rather, “This could be it.  This could be the end of my long streak of ‘good days’ and it will all go downhill again…”

I have heard stories of those who have healed within a year and of others who are still suffering after 2+ years.  I think that one of the most difficult things for those going through TSW are all the unknowns: How long until I am completely healed?  If I eat this certain food, am I going to flare again?  What will happen if it gets so bad that I have to take leave from my job, or even worse, quit?  Will the doctors believe me when I tell them what I know I am going through?  Will I have an ‘anniversary flare?’  Will I ever get better?

Month 5 vs. Month 10

Out of all those, my biggest fear right now has having something called “an anniversary flare.”  This is a flare that a majority of TSWers go through about a year after they begin their withdrawal.  To me, from stories and updates I’ve seen, it seems as though this flare can range from a mild one to a more severe one, even worse than the first.  When I even think about the possibility if it getting so bad again, I feel myself just slipping into that deep, dark hole…

My worries start to snowball.  Can I afford and would I have enough time to take leave again if I had to?  How would I be able to fight anxiety and depression that I’m sure will set in when I thought my life is finally going back to normal?  I don’t want to spend the holidays and special moments, like my anniversary, sick again.  I don’t think I have to physical strength or mental fortitude to go through it if I relapse…

Month 2 vs. Month 10

My sweet husband and caring mom do their best to encourage me and tell me that I might not flare, or if I do, it might not be as bad.  I try to take it day by day and just thank the Lord that I am not like I was at the beginning of this year.  It is hard not to freak out though, when I feel my itchy spots get increasingly itchier, or when tiny, itchy, bumps suddenly appear on parts of my skin that seem to be healing.

And in the midst of my worries and being terrified of another flare, truths remain:

God is sovereign.  God loves me.  God will provide.  He is sanctifying me in every season.  He will be glorified no matter what happens.

Those are the truths I know that I MUST hold onto.

img_7630

Recently, an incredible inspiration and dedicated advocate in the TSW community released a trailer for a documentary she is trying to raise money for.  The documentary is titled, “Preventable,” and will include conversations with specialists and sufferers in regard to Red Skin Syndrome (please watch it here!).  This young woman also traveled to DC recently with the board of ITSAN to the Coalition of Skin Diseases and the American Academy of Dermatology conference and documented her experiences there as well.  As I was watching one of her videos and listening to her frustration about conversations with doctors at the conference, I felt the frustration welling up in me too.

Please do not misunderstand me – I am thankful for doctors and medicine.  I have many friends in the medical field who are dedicated to helping people the best that they can.  They spend years in school and make many personal sacrifices so that they can help people get better and save lives.  However, in regards to eczema and steroid use, I think that most of the medical community is either misinformed or unaware, or both, and patients are paying the price.

img_6693

I know this is gross, but this is only a glimpse of my daily skin shedding from my arms and face back when it was the worse… EWW!  I had to vacuum the couch/air mattress, the living room (where I spent most of my time) and the place in front of the washing machine (where I would have to shake out my clothes) every single day.

We don’t know why some people don’t seem to be affected by heavy steroid use, while others, like myself, have their lives turned upside down when they become dependent and then cease using them.  We don’t know exactly what factors, internal and external, cause people to flare during TSW.  We don’t know why some people heal faster than others.  So much of it seems to be “guess and check” and most of the advice that’s available on how to cope and gain some relief is circulated within the TSW community because we can’t get the help we need from the general medical community.

I am praying that this will change.

We need research to be done and medical literature about RSS and TSW to be published, since this is the only way it seems our voices will truly be heard.  I think that is so sad that this is the only way we can be taken seriously – I mentioned in previous posts how my questions about diet and eczema and my inquiries about Red Skin Syndrome and Topical Steroid Withdrawal were met with laughs (truly!) and prescriptions for stronger topical steroids and immunosuppressants.

I don’t want ANYONE to go what I went through (and what I went through is actually MILD compared to others around the world, which for me, is hard to fathom… my heart just breaks for them).

This is one of the most important reasons that I am excited for an upcoming special project that I will share when the time gets closer… 🙂 !!!!

As always, thank you for taking the time to read about my journey so far.  For all my family and friends and fellow TSWers who have encouraged me along the way, I am forever grateful.  I wish you a happy, healthy, hope-filled week 🙂

RAWK OUT & ROCK ON!

Love,

Hannah

7 months & counting.

 

Screen Shot 2016-08-02 at 1.03.30 PM

Courtesy of http://www.timeanddate.com, because I was too lazy to do the math.

So I was planning to write and post this last Thursday, but I was too busy watching movies on my couch.  Just kidding.  Kind of.  Not really.  (It’s summer!  What do you expect? 😛 )

 

Anywho, as of last Thursday, it has been 7 months since I’ve started this journey of going gluten-free & “mostly” vegan and going through Topical Steroid Withdrawal.  When I think back to earlier this year, it just seems SO crazy to me – the nights of my face burning, the angry red rash that spread over almost my entire body, the bone deep itch, the insomnia, the anxiety… Sometimes it’s difficult to even try to remember what happened; there’s a part of me that doesn’t want to recall the pain and hopelessness I felt so often during the darker part of this season.

BUT, at the same time, when I do think about how I started out, it just makes me rejoice in the Lord EVEN MORE to where He has brought me these days!  I remember Kyle and I praying for improvement by the summer, and the Lord certainly answered 🙂

I like making lists, so here is a list of some of my “milestones” since my last post:

  • I’ve been sleeping in the same bed as my husband for the past several weeks!!!  No more sleeping on an air mattress in the living room and no more waking him up because of scratching in my sleep (rather, waking him up because I’m stealing the sheets, hehe)!
  • I’ve been sleeping through the night!!!  Back in May, I tapered down to 1/2 of an Atarax (super duper antihistamine that would make me SO drowsy), and then to 1 Benedryl, and then this past week, I’ve only been taking 3mg of melatonin before bed and have still been able to get a full night’s worth of sleep!  I will never take my ability to sleep like a rock for granted again.
  • My Vitamin D3 levels skyrocketed from a 7 (back in February) to a 52 (this past July)!!!  I remember Dr. Hayduk telling me that 7 was super close to the worst she has seen, and informing me that around 30 was average, but D3 levels above 50 were for optimum skin health.  Hooray for supplements and sunshine!
  • I am back in the gym!!! WOOHOO!
    IMG_7171

    Believe it or not, I used to flip tires like those across the parking lot and beat them with a sledgehammer in Boot Camp class!  Once I’m healed completely, those tires better watch out, because I’m coming for them…

    While I haven’t gotten back to lifting just yet, I’ve been going to Zumba and Bang Power Dance classes 3x a week.  The very first time I went to a class this summer, my neck and arms were pretty itchy, but since I’ve been going, either I haven’t noticed or my body’s adapted to the sweating.  I missed working out and dancing most of all.  Once my wrist heals up (more about that later), I think I would like to get certified to be a fitness dance instructor… that’s been on my mind for a while, and I’m thinking I just might as well do it!  But we’ll see 🙂

  • While my arms and neck still have some healing to do, the rest of my body and my face are doing pretty darn well!  In fact, I’d have to say that my facial skin is even better than when I was on steroids!  There would always be these stubborn, itchy, flaky patches on my upper lip and chin, but that has gone down considerably and cheeks and forehead are smooth and clear.  The hairs on my hairline have also been growing back!  They look funny, because they’re sticking out in all these different directions, but I don’t mind one bit.
IMG_7268

Me and Kyle all cleaned up and spiffed out for our friends’ wedding a couple of weeks ago (look at my husband, all handsome in his bow tie and suspenders! 🙂 ).  It was a gorgeous, Christ-filled backyard wedding.  I was thankful that my skin caused no issues whatsoever!

So, all to say, it has been a pretty awesome summer!  In all the excitement of feeling almost normal again, though, I do have to remind myself to not push too hard, too quick.  I have to make sure that I don’t go to bed too late and that I try to get enough rest.  I’ve also been a little bit more slack with my diet these past few weeks (slack = still strict with no dairy, eggs, or gluten, but not regulating my sugar intake as much as I should and have been sneaking in nightshade veggies in here and there) and I’m pretty sure the skin on my neck is feeling the effects (super itchy and flaky, but AT LEAST, not inflamed…).

TSW is a weird beast because the healing process seems to be SO DIFFERENT for those going through it, in regards to timelines and what seems to help.  In the online support groups I am part of, I see posts from TSWers who say that diet doesn’t make a difference and that it’s only time that heals, while others (like myself) have experienced improvements with changes in diet and the addition of supplements.  There is still much research to be done on this condition, which I hope will be soon, so that all those who are suffering or those who unfortunately will go through this due to their steroid use, will get more of the help that they need.

 

IMG_7248

Mushroom risotto to the rescue!

While I’m praying that this is all uphill from now on, I know there’s a chance that it could all get bad again.  It’s hard for me to fathom that it’s even a possibility, but in reading of other people’s experiences of seeming to “heal” and then flare again (aka an “anniversary flare”), sometimes for months on end, just scares me so much.  I’ve shared this fear with my husband several times since things have been improving, and he has gently reminded me that it is OK.  While we should constantly depend on the Lord for our every breath, I think we tend to turn to and cry out to Him more earnestly and often in times of trial and despair, rather than in times when life seems to be “going alright.”  It is now more than I ever that I need to be leaning into my Lord, and praying that He would continue to “cling to me,” as He has been doing, through all the good and the bad.  And even if I do get bad again, may it be yet another testament to His steadfast faithfulness.

God has been working a lot on my heart through all of this, especially burning away my pride, which manifests itself in many different forms (i.e. being overly concerned with my physical appearance, thinking that I actually deserve certain blessings, taking my days for granted, being bitter about unfulfilled dreams and aspirations, the list could go on…)

IMG_7249

My new music space, where I play piano with one hand, hehe.

At the beginning of the summer, I had all these plans swirling around in my head to play open mics with friends, work on some home recordings, and really get back into songwriting, but in June, just before school let out, I noticed a sharp pain on the side of my left wrist.  It turned out to be something called De Quervain’s Tenosynovitis – inflammation of the tendon sheath on the thumb side of my wrist, which makes it extremely painful to grip anything or move my hand from side to side.  Often times, people develop it because of overuse or an injury.  I’m not quite sure how it happened.  I’ve wondered if it was because of playing piano and the guitar, but I played  A LOT more in the past and never had this issue.  It’s also crossed my mind if it had anything to do with my intense scratching sessions (which I think is totally plausible, but others, not so much… haha).  However it happened, it’s been kind of a bummer, since I haven’t been able to serve instrumentally on the worship team or just make music the way I’ve wanted to.

There was a point where I was like, “Really?  Can I catch a break?” But that was short-lived when I remembered others who are going through MUCH worse, that this condition is definitely treatable (I am thankful for OT!), that there is much to be learned in this season too, and that I AM BLESSED BEYOND MEASURE!  There is NO room for complaining or pity parties here… only room “Thankfulness Jars”, wrist braces, and banana nice cream instead!

IMG_7263

Just when I told myself I’d cut down on sugar…

I’m going to end this post with 2 things that filled my heart and blessed me immensely.  The first one was a response I got from Dr. Hayduk after emailing her about how my skin has been improving.  The first part of her email said this:

I happened to have a new patient with eczema coming in as I was reading your email.  I copied it, scratched out your name, left date and time and had her read it.
Your thoughts to me were magic words of encouragement to her. She too is post-steroids and feeling a bit hopeless. You certainly reassured her and stopped the crying. Just wanted to let you know that your healing journey is a ‘testament’ to others in similar shoes. 😉
You are a teacher even when not teaching!
Even if no one was encouraged by my TSW journey, I know that my suffering would no be without purpose – for the Lord ordained it, and if He saw fit that I went through it, then Soli Deo Gloria! But to hear this was just another reason for me to praise my Lord and thank Him for the little things 🙂
The second thing was getting to meet up with some dear friends from college and visit our old campus (“I LOVE Westminster on the weekends!” -_-).  Of course it was awesome to see all the beautiful additions that were made to the campus and to recall all the incredible memories we made there (aka being surrounded by BRILLIANT musicians, just being able to walk down the hall and find someone to jam out with, being crazy was the norm, etc.), but the best thing was just catching up with these ladies and hearing all the wonderful things going on in their lives.  It isn’t the easiest to find such community right out of college, but to have people in your life who you can always pick up where you left off with means a lot.
IMG_7292

“The Lord bless you and keep you; the Lord make his face to shine on you and be gracious to you; the Lord turn his face toward you and give you peace.” Numbers 6:24-26

Alright, time to walk Bella!  Until next time,
RAWK OUT AND ROCK ON!
Love,
Hannah

 

Looking Up.

IMG_6713

Just some of the MANY MANY beautiful and encouraging cards I’ve received over the past few months from my incredible family, coworkers, and friends.  Each of these cards arrived exactly on time 🙂

I know… it’s been a while since I last posted… (45 days to be exact)!  Nothing has really happened, though, in the past month and a half…

JUST KIDDING.

So many WONDERFUL, EXCITING, AWESOME things have happened and I feel like with each passing day, I have something new to add to the list.  Hmm, where to begin…

Kyle and I got to celebrate our 1st year of marriage!

114-Reception

One of the best days ever!

On April 11th, my husband and I got to celebrate one year of coming home to each other, falling asleep nightly to The Office, discovering pet peeves we failed to mention (or just didn’t know about) beforehand, extending grace to one another in our weaknesses and struggles, as well as encouraging each other’s strengths and passions, and just learning and growing alongside each other in our walk with the Lord.  I know I’ve said before that we never expected to experience the kind of hardships we’ve gone through in the past several months during our first year of marriage, but by God’s grace and the encouragement of Christian brothers and sisters, we’ve been able to see the many blessings that have come of it.

I was just sharing with a friend yesterday about how I’ve seen the outworking of the Gospel in the way my husband has taken care of me and selflessly served me in this season.  I think back to the nights just a couple of months ago when I would be sobbing in the middle of the night because of the pain and how I couldn’t sleep and how Kyle would wake up and always come to comfort me and pray for me, often half-asleep, and stay with me until I was okay.  I think of how he has taken on most of our chores without complaint as I’ve been slowly regaining my strength.  He is not perfect, and neither am I, but what a miracle it is that the Lord saw it fit to bring us, two flawed human beings, sinners that have been redeemed, to walk through this earthly life together.

We also got celebrate Kyle’s 30th birthday!

IMG_6703

My husband looking handsome and me trying to rock a headband and a hoodie… hehe 🙂

2 days after our wedding anniversary, Kyle turned 30 (I told him that because the dates are so close together, he has no excuse for ever forgetting our anniversary… haha)!  He ended up being off that day and I was still on leave, so we just got to enjoy the day together to celebrate both occasions.  Again, it wasn’t what I had pictured for our first anniversary and his 30th birthday, but it was still awesome because we were together.

A couple of weeks later, Mom Graf and I got to throw a surprise birthday in NJ for Kyle with the help of our awesome family and friends!  It was rainy that morning, but the weather cleared and it turned out to be a beautiful day.  We had such a fun time of eating good food and catching up with our amazing friends who we don’t get to see very often.

IMG_3312

Kyle and some of his bros.  What a serious bunch…

Also, I went back to work!

image (6)

Back to the land of glockenspiels, quarter notes, the treble clef, and reminding kids to use hand sanitizer after they blow their nose.

After being on leave for over a month, I finally returned to my music classroom.  Don’t get me wrong, I am so thankful that I was able to take time off to rest and give my body some time and space to heal, but I was definitely missing my kiddos, my coworkers, and teaching.  I was super anxious about how my sleep would be once I started work, and I had flashbacks to to February, when I started to get itching episodes WHILE I was teaching.  I was also nervous to be away from what had been my “safe space” (our living room couch) where I didn’t have to worry to much about what I looked like (I could be red and flakey without having to worry about explaining what was wrong to people who didn’t know what’s been going on).  However, the Lord was gracious and answered my prayers.  For the past few weeks since I’ve been back, I’ve been able to sleep mostly through the night, only waking up once or twice, with the help of only half an Atarax or 1 Benedryl tablet!  I can’t really describe how amazing that truly is!  I’ve also been itchy from time to time during the work day, but it is NOTHING compared to what it was.

At the beginning of the first week I got back, I was trying to figure out how to explain where I’d been for the past month to my students, as well as how to address my current appearance.  I’m not quite sure, but there was a part of me that was embarrassed to say that it was a skin condition and I didn’t know if I should even explain TSW.  Initially, I kept my explanation vague and then at one point, I tried to explain what an autoimmune condition was to the older students, but it still didn’t quite make sense.  Finally, I started off telling one class that I had bad rashes and I noticed 3 students sitting right next to each other smile really big.  In my head, I was like, “What is going on?”  It was then that the girls rolled up their sleeves and showed me the rashes on their arms.  One of the students said, “Mrs. Graf!  We have rashes too!  It’s called eczema!”  It might sound weird, but my heart was so full a that moment!  Part of me was definitely sad that they have eczema (I pray that they will grow out of it and not use topical steroids), but there was also a part of me that was like, “Kids DO understand!  Because so many of them have it!”  The fact that they were smiling because we found out we all have eczema was something I will never forget.  From that point on, I just told every class that I had eczema and so many kids would raise their hands and shoutout, “I have it too!”

I’ve experienced such encouragement and support from my coworkers and students since I’ve been back.  My amazing coworkers sent me so many cards while I was out, as well as some cards from entire classes, so I was surprised when I kept receiving more cards since I’ve been back!  My desk at home is COVERED with them and all the other beautiful cards I’ve gotten from my family, church family, and friends.  Every time I’ve received a card from anyone, I’ve just had to thank to the Lord for people’s thoughtfulness and kindness.  I pray that He’ll always give me the same compassion to do the same for others.  My students have also been so sweet.  Just this past week, I’ve had several students either stop me in the hallway or look at me on their way into the classroom and say, “Mrs. Graf!  It looks like you are getting better!  How are you feeling?”  Talking about trying to hold back the waterworks!  Haha!

Healing is happening.

Screen Shot 2016-05-08 at 2.24.01 PMScreen Shot 2016-05-08 at 2.26.03 PMScreen Shot 2016-05-08 at 2.26.20 PM

It’s been a long road and I know I’m not out of the woods yet, but I’ve been seeing AND feeling healing taking place!  These are just a few pictures of my progress over the past 4 1/2 months.  Even in the past couple of weeks, I’ve been feeling more and more like myself.  My sleep has been so much better (been averaging about 6 hours, only waking up once or twice through the night), my skin shedding has gone down drastically (I considered posting a picture of my clothes COVERED in skin flakes, but I decided to not subject you to that horror… EWW!!!), I am not as red or as itchy as I was even a month ago, I no longer waking up in extreme pain from dried out, sore skin, my swollen lymph nodes seem to be shrinking, and I’ve been able to branch out of my regular cotton long-sleeve shirts and leggings because my skin doesn’t feel so sensitive (don’t judge me about the leggings… I used to joke around in college that leggings are not a good substitute for pants, but my mind has forever been changed… leggings are so comfy and have saved me from scratching my legs raw)!

I am SO thankful for these positive changes and I’m trying to focus on them, but I know I still have a ways to go.  Last week, I experienced a weird tingling sensation in my hands that lingered for several days and I was waking up with swollen knuckles.  I went to the doctor who suggested it could be psoriatic arthritis, but I think it’s TSW related.  She ordered me some blood tests, which I will definitely still take, and offered steroids again, which I politely refused.  I tried not to get discouraged when she offered them, because I was so excited about the progress that I’ve seen and felt, but I tried not to let it get to me.  Fortunately, the tingling has gone down and my knuckles are not as stiff this week, so I’m taking that as a good sign.

In the midst of all the progress, there is still a part of me that is so scared that things will get bad again.  A few nights ago, my wrists got super itchy and I felt myself slipping into panic/anxiety mode.  Kyle found me huddled up against the couch on the floor, scratching furiously at my arms.  He calmly got my ice packs, which I haven’t used in so long, and wrapped my arms.  The itching finally stopped, but the fear was still there.  I know so many people in TSW experience cyclical healing, in which they flare, they get better, they flare, they get better, etc.  Kyle, Mama Guerra, and Mama Graf have all tried to remind me that everyone is different and that there are those people who experienced significant healing in less than a year.  I’ve been able to come to a place where I am going to be positive and move forward with the mindset that things are uphill, but also know that if I do flare again, the Lord is going to give me strength to get through, as He has done and is doing every single day that I am on this earth.

photo (25)

Can’t wait to read this book!

This past weekend, I had the wonderful opportunity to attend the women’s conference that the women’s ministry at my church, New Hope OPC, organized and hosted!  Our main speaker was Aimee Byrd, an awesome blogger, radio show host, and author who is also a member at New Hope.  Her talks covered chapters from her book, Theological Fitness: Why We Need a Fighting Faith.  Throughout the weekend, she unpacked the verse:

“Let us hold fast to our confession of hope without wavering, for he who promised is faithful.”  Hebrews 10:23

I always find it so amazing how often I can read a verse over the years, and gain so much more richness and insight, when someone like Aimee, or our Pastor Francis, breaks it apart and points out connections to other parts of Scripture.

In her first talk, she defined theological fitness as “the persistent fight to exercise our faith by actively engaging in the gospel truth revealed in God’s Word.”  She then challenged us with the first part of the verse, “Let us hold fast” in reminding us that “holding fast” means being engaged in God’s Word and holding tightly to our confession of hope within the church body.  In the second session, she unpacked “the confession of our hope,” who is our Savior, Christ Jesus, and talked about how the truth that “Jesus is Lord” is displayed in who He is and what He has done/is doing.

The third session focused on how “he who promised is faithful.”  There was another verse from Hebrews Aimee went over in this session that really hit home with me.

“For the moment all discipline seems painful rather than pleasant, but later it yields the peaceful fruit of righteousness to those who have been trained by it.” Hebrews 12:11

While I don’t believe all that I’ve been going through is “punishment” (but I do believe that Lord allows us to experience the consequences of our sin and corrects us when we need it), I know that the Lord has been disciplining me and teaching me many things in this season.  We are reminded in Scripture that the Lord disciplines those he loves and that “he disciplines us for our good, that we may share in his holiness” (Hebrews 12:11)

In being stripped of my comfort, my appearance, my “everyday life,” the Lord has confronted me with my pride and it’s many manifestations.  I’ve been reminded that Christians are not guaranteed a life of comfort.  In fact, we know for a fact that we will endure hardships, suffering, tragedy, and trials as long as we are living our earthly life.  I’ve been reminded that my confidence as a believer does not come from my outward appearance, my intellect, or the talents I’ve been given, but rather from Christ, who gave me true life.  I’ve been reminded not to hold on too tightly to all that I know today, for it can all change in the blink of an eye.  However, I know that through all the changes and seasons, God is my solid rock.  He is unchanging.  He is my Provider.  My joy, peace, and strength come from Him.

Aimee talked about the choices we can make in the trials we endure.  Will we be hardened by our hardships?  Will we allow them to make us bitter?  Or will we choose to be “trained by it,” will we allow our hearts to be softened and molded as we are being sanctified each day?

Even though I am feeling better these days, I know that I am still called to persevere and hold fast to my Lord.  I know this season will be one of many hardships that Kyle’s and my road will be marked with, but what joy and peace we can take in God’s faithfulness to us!

Also during the conference, some amazing women shared their incredible testimonies and I got to talk and meet many more of the awesome women from my church.  I was so blessed by the teaching, the conversations, and the fellowship.  I’m really glad that I got to go.

IMG_6645

Mixed berry chia seed jam with coconut whipped topping… I made this a while ago but I just had to post it because it tasted so good. 🙂

And the cherry on top was coming home after the conference to a clean living room and deflated air mattress!  Kyle cleaned up all my mess (aka shoes, music, bags, Hello Kitty socks, etc.) in our living room and packed up the air mattress.  Last night, we attempted to sleep in the same bed after many, many nights sleeping in separate rooms, and it was awesome!  Well, for me at least.  I didn’t notice I was scratching in my sleep again, so Kyle didn’t sleep so well… So it’s back to the air mattress I go… but I’m not so sad about it, because I know I am that much closer to “normalcy” in that sense 🙂

Alright, it’s The Office time/bedtime.  As always, thank you for your amazing support, prayers, and all the sunshine you bring to my life.  Wishing you a happy, healthy week!

ROCK OUT AND RAWK ON!

Love,

Hannah

Little Victories.

image_5

Out in the sun at my favorite coffee/tea shop.

Today marks the 94th day of being steroid-free and vegan/pescatarian (hehe)!  And what an adventure it has been…

My days during the past week and a half have been REALLY GOOD.  Nights have been another story, but I’ll talk about that later.

image_4

Psalm 66:4 “All the earth worships you and sings praises to you, they sing praises to your name.”

Waking up to a bright sun and blue sky have definitely helped me to fight the urge to want to just stay inside and sit on my my couch.  Now, I know that more often than not, that’s usually not a choice that people going through TSW can make, because of the unbearable itchiness, pain, and fatigue.  That was certainly me in January and February.  I think back to the state I was in and honestly can’t believe I still had the willpower to go to work (only by the grace of God… hehe :] )!  I know that I am very fortunate to have been able to take short-term leave for the time being.  It’s been slow going, but I’ve been trying to take full advantage of my spurts of energy and moments where my pain is bearable or better yet – itch-free!

image_6

Got to paint this canvas and make music with a dear friend last week 🙂

I can’t remember a time when I’ve ever been so happy to be able to wash the dishes or do my laundry, haha!  I’ve also been blessed to recently be able to catch up with old friends and spend time with new ones.  Even though there are still times I feel like I am on the “inside looking out” – looking out at the world continuing on, looking out at family and friends living their lives, taking trips, pursuing their dreams – I know that I have to be thankful for all that I’ve been blessed with and also, that I now have the energy to do some “normal, everyday things,” (even if those moments are sometimes cut short by an itching episode or an anxiety attack).

image

An Easter care package from my one of my best friends from college.  Those Larabars were gone in a day… 😛

Some other things that I’ve deemed “little victories” from these past couple of weeks are:

  • SHOWERS WITHOUT FREAKING OUT/ITCHING AFTERWARDS!  I mentioned in an earlier post that showers have been difficult, just because of how the water has stung my skin and how I’ve had some pretty rough itching episodes after I’ve gotten out.  There was a day last week when I said, “Man, I’m tired of being smelly and covered in flakes!” (Gross, I know.) so I just hopped in, took care of business, got out, and got on with my day.  You wouldn’t believe how excited I was to tell my husband and my mom that I took a shower… HAHA.
  • SLEEPING IN THE SAME BED AS MY HUSBAND!  Even though it was only for a few hours at a time for two nights, this still meant so much to me.  I’ve spent that past month or so sleeping on the couch because I constantly wake up scratching myself and have trouble falling back to sleep (at MY request, haha!  Kyle has offered me the bed many times, but I wanted to be able to have the distraction of the TV and easy access to my ice packs).  I’ve been really sad about this, as I think about how we are still in our first year of marriage, and how we’ve loved just falling asleep and waking up to each other.  I know the new sleeping arrangement is only for a season, but it has still kind of bummed me out.  So when I was able to sleep for a little, next to Kyle, in our bed, without itching, for two nights this week, I saved it in my memory as something I could smile about when I was feeling down 🙂
  • WEARING EYELINER AND A DRESS!  I used to feel so self-conscious when I left the house without wearing makeup.  Because of how my skin has been, the most I’ve been able to do these days is fill in my brows, which have thinned considerably.  I’ve also only been able to wear nothing but cotton, because anything else irritates my skin.  This past Sunday, though, I decided to try to wear some Almay eyeliner and a dress (it was soft!).  It made me feel like a girl again!  I can tell you that going through TSW has humbled me in the appearance department.  Of course, I always want to try to have good hygiene and look “presentable,” but any confidence I was formerly trying to gain from my hair, makeup, or clothes has gone out the window.  It has been a good reminder of where my true confidence should actually come from.  I recently got several stares at my crazy red face and “red sleeves” at the grocery store, but to my surprise, it didn’t bother me!  I just kept smiling and was just happy to get out of the house.  I will be glad when I can wear different kinds of clothes and do my makeup and hair again on a regular basis, but I know I won’t be so self-conscious anymore if I don’t wear makeup or if my hair is not just the way I want it.
image_1

I cheated on the “raw” part of my diet with this guy, but this pizza was still gluten-free and vegan… THIS HIT THE SPOT.

My in-laws came for a visit for Easter weekend and we had a blast!  Friday night, we went to a local restaurant that has vegan and gluten-free options for pizza.  My mom-in-law was laughing at me because I was so focused on my food when I was eating it!  Haha 😛  The next day, Kyle spent some time with Papa Graf, while I went out shopping with Mama Graf.  We ended the evening with dinner cooked by my husband and some of the latest episodes of “Impractical Jokers.”  On Sunday, we got to celebrate the resurrection of our Savior, Jesus Christ, with our awesome church body, and then, we met up with my side of the family for Easter lunch at Cracker Barrel!  It just made me so happy to be all together.  We haven’t all been together since the wedding last year!

photo 2

Happy Family.  If I had the technology, I would Photoshop my bro-in-law and my sis-in-law and her sweet family into this picture.  Then, it would be perfect 🙂

As you can see, from far away, my skin could almost pass for normal!  I was thankful that things were pretty calm that day.  Since then, I’ve flared up, mostly on my arms.  My family said that they have noticed some improvement (not as red and flaky) and that I just look “tan.”  I would say I look more “sunburnt” and I definitely feel more “burned” than “tan.”

image_2

My mom-in-law got me this limited edition Larabar… It really tasted like a snickerdoodle!

While my skin has been slowly improving (looks-wise, at least), my sleep has been really rough.  I always seem to wake up around 1 or 2AM, usually scratching away at my poor arms, and then the itching doesn’t subside and I can’t get back to sleep until around 5AM. Several nights, the itchiness, fatigue, and frustration caught up with me and manifested themselves into anxiety attacks.  I am so thankful to have my husband and my mom (only a phone call away!) to help talk me through these moments.  My heart goes out to those who have to go through such moments without anyone physically by their side 😦

image_3

Another sweet treat – dairy-free fro yo with berries and walnuts!

I had a follow-up visit with my awesome naturopathic doctor last week.  She too said that she noticed some improvement in the appearance of my skin and said that it was a good thing that my rashes are moving downward on my body (yeah, I forgot to mention that I now have these rough, little itchy rashes covering my tummy and back, and I started to get some of those same spots on my thighs… I wasn’t happy about it, but if she said that’s a good sign, I’ll take it!).  She added some new things to my supplement regime to try to help with my sleep cycle.  She believes that my adrenals are impaired (because of those darn steroids!), so my cortisol levels are out of all over the place (cortisol is the body’s natural “steroid” and helps in the regulation of sleep) and that I’m probably also waking up in the middle of the night because I am still detoxing.  This for sure makes sense, when I think about all that I’ve read about eczema and topical steroid withdrawal.  I have to tighten up on my diet and eliminate some other things that I haven’t already eliminated to see if there’s anything else I need to try to avoid, like nightshades (i.e. tomatoes, white potatoes), and sugar (completely avoid processed sugars and be careful of my fruit consumption).  So, goodbye dairy-free chocolate… for now, at least 🙂

IMG_6303

Bella may look nice, but she is a naughty little dog… Hehe!  I love her like she loves socks.

One more ray of sunshine from this week – I joined a couple of support groups on Facebook for those going through TSW.  There are about 5,250 members in one group – made up of people who have been through TSW, are going through it, or are taking care of someone who is going through it.  I can’t express to you what encouragement I have found in the past couple of days of having joined this group.  It has reminded me that I am TRULY not alone and it has reminded me of the power of community.  People from all over the world going through this – this crazy withdrawal process that I never have heard of before – post their struggles, their victories, their questions, and encouragements.  I’ve seen several posts of those who seem to be on the same recovery timeline as me, as well as many other posts of those who are far into the healing process – 10 months in, to a a couple of years.  The uncertainty of the length of this withdrawal process is one of the things that scares me the most about everything – I cried to Kyle just the other night that I didn’t know if I had the strength to endure an entire year of this.  And he gently reminded me that I, in fact, do not have the strength.

But the Lord does.

I cannot see exactly what the Lord is doing in this time of suffering, and some of those things, I might never know… But what I do know and am reminded of in Scripture and in the ways He’s shown His faithfulness in my life, is that He is loving and compassionate, and He is sovereign.  I know that I can trust in Him and in His provision.  I can cry out to Him in the middle of the night and know that He hears me.

I know that many in this world ask, “Why?  Why would a good and loving God allow suffering and pain?”  And to that, I do have an answer.  It is not a simple and quick answer, but it lies in our understanding of who God is, who we are, what we’ve done, and what He’s done for us.  To unpack this would require another lengthy post (which I will definitely write in the future), but if you are curious and would like to talk about it, feel free to message me!  I can definitely find some time in between scratching, eating celery, and trying to sleep to share about it 😉

I want to leave you with one of my favorite songs at the moment.  This version has an excerpt from one of John Piper’s sermons about suffering, and how our earthly pain and trials are NOT meaningless.  All of this video has been a much needed reminder for me in dark times.

I hope that you have a wonderful rest of the week and for the TSW warriors who are reading this, please know I will be praying for you – happy healing!

RAWK OUT AND ROCK ON!

Love,

Hannah

Taking a Step Back.

image_1

Being able to see this beautiful sunrise made a restless night not so bad!

Good Morning!

It’s been another eventful week since I last posted, chock full of Benedryl, itching episodes, coloring books, ice packs, visits from friends… the list could go on!  I’ll try to only recap the most important parts here, so you don’t get bored 🙂

TUESDAY

image

YEAH, I broke out my Hello Kitty Vans!  You gotta a problem with that?!

Last Tuesday was a day of small victories!  I woke up to a beautiful day and got ready to do some grocery shopping.  Since it was so warm outside, I decided to wear a short sleeve shirt.  I haven’t worn short sleeves out in public ever since I started going through Topical Steroid Withdrawal, partly because of the colder weather, but also because my arms have looked so crazy!  I knew though that if it was going to be any day to wear short sleeves, it was last Tuesday, so I did!  I also knew it was time to break out my Hello Kitty Vans, so I did that too.  I took a field trip to Wegmans, armed with my Badger Balm and cooler full of ice packs in case I started itching, but I made it through without needing either of them!  It was a happy day indeed 🙂

WEDNESDAY

image_2

“It’s a beautiful day in the neighborhood” (By the way, that’s not Mr. Rogers, that’s my husband… hehe )

 

I’d say Wednesday was another “good day.”  I woke up and took a shower!  I know that sounds funny, but taking showers have been extremely difficult and a cause for anxiety for me for the past couple of months.  Some people with eczema find showers soothing, but unfortunately, I haven’t.  When the water hits my raw skin, it burns, and then when I get out, even though I moisturize, I often have an itching episode.  Last Wednesday, though, I had enough strength to keep my body moving after my shower, so that even though I was itchy, I was able to keep busy enough until it eventually went away.  Since it was Kyle’s day off, we enjoyed a nice walk around the neighborhood after breakfast.  It was nice to be out in the sun!  Afterwards, I got lunch with my mom at Wegmans (the only place I can really fine something satisfying and safe to eat these days) and then we watched another part of the Anne of Green Gables movie series (we LOVE these movies!).  I did have an itching episode while we were watching the movie, but I tried not to let it ruin a good day.

THURSDAY

image_4

Katrina + Hannah + Bella = SISTERS.

Last Thursday, I had the opportunity to take my sister, Katrina, to her ultrasound appointment to get a lump in her neck checked out.  She has been such an encouragement to me during my difficult season, so I was happy to be able to be there for her in this moment when she needed some encouragement too.  The appointment went more quickly than we thought, so we took the extra time to stop by Wegmans (can you tell it’s my favorite place?  haha), get some vegan sweets and then hang out on our parents’ deck with Bella.  It was a really great time to spend together – to talk, share our anxieties about our situations, but to also laugh and just enjoy the moment

FRIDAY

image_3

A beautiful Edible Arrangement from my work family!  I had to take a picture quickly, before my husband and I devoured it all… NOM NOM NOM.

Thursday night was a difficult night, which made for a difficult Friday morning.  I woke up in a lot of pain, especially in my neck and arms (they were sore from a night of unconscious scratching).  So it was such a blessing to wake up and enjoy a visit from my beautiful friend, Jen.  Even though I looked tore up from the floor up and I’m pretty sure I smelled (EW!), she came right on in, helped me get my breakfast together, spent some time talking about life with me, and even cleaned my kitchen!  She had remembered something I mentioned in an earlier conversation about how it was difficult for me to do chores around the house, just because I never know when I’m going to have an itching episode or because my skin just hurts too much.  I was overwhelmed with her thoughtfulness and selflessness (even though she’s ALWAYS been that way :] ) and I couldn’t explain to her how much of a blessing it was that she did for me and Kyle.  On top of that, I received a beautiful Edible Arrangement and encouraging note from my work family.  While physically, Friday wasn’t such a great day, my heart was so full as I was reminded of all the wonderful people God has put in my life.

SATURDAY & SUNDAY

image_4

The weekend was had in store for me some really hard nights of itching and anxiety, but as always, the Lord provided such encouragement and love through my church family and friends.  My friend Natalie came for a visit on Saturday night and we had a blast.  We ate dinner, enjoyed some dessert, watched funny videos, and jammed out on our ukuleles!  At one point though, I started to panic because I got an itching fit on my face.  My shirt was covered in flakes – I know it sounds gross (it is), and it’s hard to explain the trauma that not only the itching causes, but seeing your skin flakes covering your shirt… I hate even thinking about.  But she and my husband helped me to calm down.  Natalie shared some beautiful things with me, about things I could do when I’m feeling particularly down.  Afterwards, we wrote down some things to put in the Thankfulness Jar I recently made, to remind me of all the blessings the Lord gives me every single day, even in this hard season.

On Sunday, our pastor gave an awesome sermon about perseverance.  I found such comfort in the Scripture he shared, just being reminded of the loving, gracious, merciful, compassionate God we have!  It’s been so easy for me to be consumed with my pain and anxiety that I forget to cry out to my faithful Lord for help in times of need.  We also had small group that evening and it was just so great to be with our church family.  We talked more about the sermon and prayed for each other.  One of my friends from small group took the time to make me my own batch of vegan coconut lemon snack bars (they were SO good!).  Again, my heart was so filled.

THIS WEEK

image_6

A lunch date with my husband 🙂

I feel as though I’ve taken a few steps back this week, in a couple of different ways.  My face and chest seem to be doing better – they are not as red and not as itchy, just flaky.  My neck is raw, but my arms are the worst.  They always feel so itchy and dry, and they have developed tiny bumps, probably from my scratching.

It is so hard not be discouraged and to not be afraid of the unknown.  I know that healing for people going through TSW is so varied.  For some people, it takes about 6 months to see significant improvement.  For others, it takes a year, or two, or more to heal.  Consistently across the experiences I’ve read about, it seems that healing comes in cycles, which means you flare, you heal, then you flare again, and you heal, etc.  Even though I’m on my own healing journey and I seem to be improving, this still scares me.

I fear that I won’t be well enough to return to work in the time I thought.  I have trouble looking in the mirror because I don’t look like myself.  In the lonely hours of the night, I get so anxious that I won’t be able to sleep and I get frustrated that I’m not able to do what I want to do right now in this season.  It is such a fight to not give in to these fears.  There are moments that I want to just sit on the floor and cry in despair, and I do, often times with my husband holding me.

There have been other moments, though they are few, that I’ve been able push through and try to gain a better perspective.  Kyle has tried to remind me that I need to take a step back sometimes and see how far I’ve come and to remember that this is just a season.  This will pass.

I remember in the book I’m reading about suffering, the author that in his own experience, he had to learn to stop asking “Why?  Why me?” and learn to ask instead “What?  What, Lord, is it that You want me to learn?  What is that You want to do through me and in me?”

photo (24)

I love this picture Kyle got from our Gram Graf.

I won’t lie – this is so hard.  It is difficult.  But even if I don’t know what tomorrow will be like, or even what my next hour will be like, I know that my Lord is faithful, He is good, He is sovereign.  He wasn’t surprised when I started going through this.  I can even say that I believe He ordained this, for my good, and His glory.  And I can take comfort and strength and JOY from that fact.

Well, today is another beautiful day, and I am determined not to waste it!  I have another friend coming for a visit and I gotta hightail it to the grocery store to pick up some things before she gets here!

I wish you an awesome Thursday!

RAWK OUT AND ROCK ON!

Love,

Hannah

Our Plans vs. REALITY

sky

Psalm 19:1 The heavens declare the glory of God, the skies proclaim the work of His hands…

When I was a senior in college, I had the honor of giving a speech at our Spring Convocation.  At one point I said, “If there’s one thing I’ve learned so far about life, it’s that it never goes the way we plan.”

Even though it wasn’t that long ago (or maybe it really is!), I think about the lens through which I viewed that line then and how I view it now.  Being the bright eyed, bushy tailed 22-year-old that I was, I thought about the wonder and excitement that those words held,

“…it never goes the way we plan.”

At that point, I couldn’t really tell you what my “plans” were.  The possibilities seemed endless.   I daydreamed about going back to Africa and teaching music, or moving to Austin, TX to get the opportunity to gig around at night while teaching during the day.  I toyed with the idea of staying another couple of years to get a degree in Vocal Pedagogy.  It was all really exciting, but also very overwhelming.  In the midst of it all, though, I did know one thing:  I knew that wherever the Lord brought me, He would take care of me and I wanted to do my best to serve Him whatever I ended up doing.

So far, I can say that I’ve experienced the beauty and joy of things not going the way I planned.  I ended moving back in with my parents after I graduated – not what I initially had in mind, but ended up being awesome and exactly what I needed.  I wasn’t sure if I’d start teaching right out of college, but I ended up getting blessed with a job at amazing schools with amazing people.  And  I thought it would be a while before I met someone, but a dear friend introduced me to a guy she knew and we ended up liking each other so much that we eventually got married (of course, there’s more to that story 🙂 )

IMG_1580

WE WERE SO YOUNG… AND WHERE’S HIS BEARD?!?!

And yet, in retrospect, I don’t think I thought about the flip side of that statement, when those words hold difficult obstacles, or what those words looked like not just in the grand scheme of things, but in regular day-to-day life.

I didn’t think about how the floodgates of health issues could open when I decided to eat better and stop using topical steroids for my eczema.  I didn’t think about how I might spend part of my first year of marriage not being able to sleep in the same bed as my husband (because of my insomnia and waking up almost every hour) or having to ask him to help me to do things that I normally could do myself, (like wash my hair).  I didn’t think I would ever have to take leave from work for a few weeks because I could barely wake up on time or get through the day without wanting to scratch my skin off while I was teaching.  I didn’t think about how I might not have the energy or strength to get things done on my daily To-Do list.

photo 5

My plan: Complete everything on this list!  Reality: Only completed #1, #2, and #5

Now, what I need to remember is that although it is harder (WAY harder) to see, there is still beauty and joy in the difficult detours from our original plans.  I am learning that it is in these “detours” that the Lord helps us to depend on Him and that He is helping us to grow in only ways that detours can provide.

The past couple of days have actually been on my “better days” list, with only one or two mild itching fits and a few minutes of crying here and there (I promise I’m not a crybaby! 😛 ).  Today, however, was not so great.  I didn’t get to sleep until 4:00am because I had what the TSW community calls “sparklers” or “zingers” in my arms – nerve pains that feel like you are being pricked rapidly and deeply with pins and needles.  When I woke up, the skin on my neck and arms were sore and after breakfast, when I was trying to get ready for the day, everything just started to sting.  I made it to my parents’ house where I planned to camp out on the deck to get some much needed Vitamin D.

bella deck

Bella, already basking in the sun.  What a diva!

That plan was quickly dashed when another long, intense, itching episode ensued.  I had to show my dad how to hold the ice packs to the parts of my arms I couldn’t reach myself (I’ve gotten so used to Kyle doing it).  I had about two rounds of this until my body finally gave me a break.  As things started to calm down, I got a call from my dear friend, Esther.

IMG_0873

Esther and I, in the good old college days.

My heart is always so full and encouraged after we talk, either through text, email, or a phone call.  And if that wasn’t awesome enough, afterwards, I got a quick visit from our dear friends, Jen and Dave!  They were on their way home from traveling, when they stopped by my parents house to give me a bag full of goodies and to offer words of encouragement and pray with me.

photo 2

Some of the many wonderful treats in the bag to help me keep my mind and hands busy…finger traps and finger cymbals… haha! 🙂

I was recently reading a book about going through pain and tough times, and I remember the author’s wife in the foreword saying something about how each day had its own anxiety and each day, the Lord provided just enough strength for them to get through.  God’s sufficient grace and unfailing love have never been more evident in my life – or maybe it’s more accurate to say that maybe I am realizing and noticing His sufficient grace and unfailing love more now.

And if that realization is the only fruit that has come out of this season, it is all worth it.  Now, I don’t believe it to be the only thing that the Lord is working on in me – He is teaching me things like  true patience, trust, perseverance and humility, just to name a few – but that will be a post for another day.

Well, it is about that time – LARABAR TIME!  Just kidding – I already had one… and I gotta try to get some sleep so I won’t be a complete zombie tomorrow.  As always, thank you for taking the time to read.  I hope you have the best Tuesday ever this week! 😛

RAWK OUT AND ROCK ON!

Love,

Hannah

My Week of Sunshine.

image

Pre-made meals from my amazing church family – what a blessing!

What a crazy time it has been since my last post…  There have been mostly good, wonderful, amazing things!  There have also been some very difficult moments, but these made the good moments much more awesome 🙂

Let’s see, where to begin…

My first ray of sunshine: A couple of Fridays ago, Kyle and I took a field trip to a naturopathic physician in Rockville.  If I had to summarize in one sentence how the appointment went, I would say, “Kyle and I left her office with so much hope and relief!”  During the 2 hours that we spent with Dr. H, I got to tell my whole history of eczema and more (she asked so many questions, which was great!), and then we spent a considerable amount of time going over her treatment plan for me, down to the tiniest details.  When I told her about my vegan diet, she smiled and said, “No wonder you’re falling apart!  Where’s your protein, girl?!”

Now, I know that there are vegans out there who are getting an adequate amount of protein, but I guess because of the state I am in, my beans and nuts and seeds were not enough.  Dr. H said to add fish into my diet – like cod and wild Alaskan salmon.  What a twist in my “raw food adventure,” right?  Haha.  Well, I’m still eating mostly raw fruits and veggies, but have now added fish for dinner (can I confess I was secretly so happy about this?  I’ve loved my raw food, but adding the fish satisfied a part of my stomach that all the hummus in the world couldn’t fill 😛 ).

supplement family

My new happy little family of supplements 🙂

This visit was such a contrast to the doctor’s appointment I had gone to a couple of weeks before, when all the doctor could do was offer me steroids.  Instead of feeling discouraged and hopeless, I was feeling determined and hopeful.  I stocked up on all the supplements and foods she had planned out for me and then I went straight to the lab to take another blood test to check my Vitamin D levels and how my thyroid was doing.

Several days later, I received an email from Dr. H with my blood test results.  Apparently, my thyroid has been having some trouble, but she was more concerned with my extreme Vitamin D deficiency.

“You have almost made the list for worst ever seen.  You are at a 7.  Need to be at least 32.  Greater than 50 for best skin’s health.”

When I read that, I immediately said to myself, “I KNEW I WAS SUPPOSED TO END UP ON THE WEST COAST, CLOSER TO THE MOTHERLAND, CLOSER TO MY COUSINS, AND WHERE THE SUN IS ALMOST ALWAYS SHINING!”

Haha, just kidding 😛

Actually, I was happy to read that part of the email because it was like finding yet another piece of this crazy health puzzle.

For the first part of last week, I was in good spirits and noticed that the inflammation in my arms, neck and chest were going down, though my itching fits were still in full force and my sleep was a 3 on a scale from 1-10, at best.

My second ray of sunshine: On Tuesday night, my pastor and his daughter came to our apartment to bring us meals (of all raw food!) that his wife so thoughtfully prepared!  She had looked up and made recipes from some of the websites I had mentioned in an earlier blog post.  I was speechless.  Not only did this save me so much time that I usually spend prepping my meals when I get home from work, but the meals were DELICIOUS and I had lunch and dinner for the next few days!  Our pastor prayed with us  and offered great words of encouragement.  Right after he and his daughter left, I couldn’t help but cry – cry at their thoughtfulness, compassion, and the love of Christ overflowing in them.  Kyle and I were overwhelmed with gratefulness and joy to say the least.

image_1

Raw Pad Thai with Almond Tamari Sauce and Raw Spring Rolls with Peanut Sauce! YUMMY!

As the week went on, I felt my earlier improvement start to fade.  My itching episodes continued, not just in the morning or at night, and then I had a few while I was teaching.  THIS WAS THE WORST.  Trying to keep my composure in front of my kids and not cry and scratch my skin off – it was certainly the Lord that got me through these moments, because it definitely wasn’t me.  Being at work has helped for the most part, in terms of keeping me busy, but it has been getting more and more difficult to just wake up, get ready, get to work on time, and have enough energy to get through the day.  Luckily, I have amazing coworkers who have been encouraging me in so many ways.

hannahnote

A third ray of sunshine: My coworker got me an adorable set of Easter Egg window clings and wrote this beautiful note to go along with it.  This brought the biggest smile to my face on an extremely challenging day.

From notes to emails to just checking in and asking me how I am and letting me know they are praying for me – these moments with my school family have meant so much.  I never knew how much a smile or a short conversation could help me pull it together for the rest of day.

A fourth ray of sunshine: After a long work week of ups and downs, Kyle and I got the chance to visit our family in NJ over the weekend.  It was just what we needed.  We met our new baby niece for the first time on Saturday!  It brought me so much joy to hold this precious baby and to see the love of family all around her.  I was happy to get a chance to catch up with my sister-in-law (who had surprised me with a huge pack of Chocolate Brownie Larabars earlier in the week!) and to see my other niece and nephew too!

Later that day, we met up with dear friends at a nearby diner.  This dinner hangout was awesome not only because we got to spend time with our incredible friends, but because it was also the first meeting between my husband, his best friends, and our friend’s coworker and friend to start planning a debate they are hoping to put on, regarding the Christian and Atheist worldviews.  I wish I could’ve recorded the great dialogue that happened, but hopefully, more people will get to hear it if this debate comes to fruition (which we are praying it will!).

image_3

A pretty accurate depiction of Roo’s and my dinner, if I do say so myself!

Our friends’ daughter, Roo, is hands down, one of my most favorite people on this planet (and Kyle’s too!).  Because of food allergies, she also has to bring her food in a lunchbox to restaurants, so between the both of us, we had fruit and fish for dinner.  Our sweet waitress, Norma, brought each of us a cantaloupe half since we couldn’t really find anything we could eat off of the menu.

image_2

It was fun digging into this with a spoon!

Later on in the evening, Roo asked Kyle and I to come to another seat at the table because she had a surprise for us.  This is what was awaiting us on the chair, under a coat:

hannahkyledoll

ARE YOU KIDDING ME?!  THIS IS AMAZING…

Our friend, Fitty, is SO amazingly talented at being crafty and creative (check out her awesome blog here!) and made these dolls with Kyle’s and my faces on them!!!  This took an already amazing weekend to THE NEXT LEVEL…  We are so lucky to have these amazing dolls sitting on our shelf, and personalized too!  Fitty has a whole store full of them, plus some lovely Bible backpacks, that are sure to bring happiness to you or someone you know.  Yup, these dolls have found a special place in our apartment for all to see 🙂

So Saturday-day was was awesome but Saturday-night was another story.  I had one of the worst itching fits so far in my history of itching fits, to the point where I could barely respond to my husband, who was holding ice packs to my raw skin, and trying to figure out where to apply the balm and flower extract we got that is supposed to cut the itch.  For anyone who suffers from anxiety, they will understand the distress, panic, frustration, and loss of control I felt in that moment.  This kind of anxiety during my itching episodes and other situations (like going to sleep or taking showers) has been developing over the past couple of months as all of this has been happening and I can say that I’ve never experienced anything like it before.

It takes great effort to try to hold it together in front of others, like when I’m at work and trying to get through the day, but there are times when you just need to let it all go.  I can say that the Lord has carried me through these moments each and every single time.  He has shown me such comfort and strength in the times I cry out to Him.  I see the love of Christ overflowing in my husband’s patient, serving heart, and through my family and friends’ genuine care.  It can be so hard in the moment, but somehow, I always come out the other end still breathing 🙂

After the worst of my itching fit on Saturday night, Kyle and Mama Graf suggested I hang out with Gram Graf in her sitting room until I got sleepy so I wouldn’t be alone (I have to sleep by myself these days because I wake up so often from the itchiness and restlessness).  As I attempted to lightly scratch my arms, neck, back, and face and waited for the itching to fade during the next hour or so, Gram Graf stayed up with me watching a movie on TV.  I found out later that she had already seen the movie right before I came to hang out with her, but she watched it again since I hadn’t seen it.

Yet another ray of sunshine.

I am thankful for the rays of light that bring me such hope and encouragement in dark times.  Though there are moments I question why this is happening to me, when I get really angry or sad at the situation and I don’t feel like myself, I know that: 1) My Lord is faithful and I can rest in His provision and sovereignty and 2) I have to keep going and I have to keep fighting.

That’s my only choice right now.

Not to say that I can’t cry or experience frustration at the circumstances, but I can’t let it consume me or let my joy be robbed from me.

I had a pretty big decision to make recently, which I will talk about in a later post, but it’s about that time to try and sleep!  As always, thank you for taking the time to read, respond, and just come along this journey with me 🙂

Tomorrow is a good day.

IMG_1620

La vita e Bella.

RAWK OUT AND ROCK ON!

Love,

Hannah

 

 

Red Sleeves, Breakfast Bars, and my Valentine.

photo 1

Chocolate Coconut Raw Energy Balls!  They were delicious and definitely gave me the energy to get mad at Kyle when he said they looked like something else… !!! Hehe 🙂

Why, hello there!  I know it’s been awhile… I meant to post this past weekend, but itchiness and fatigue got the best of me (BOOO!!!).  It’s all good though.  I’m here, I’m breathing, I had an “Ice Day” and was off from work, my husband is home – I’ve got nothing to complain about 🙂

This past week was full of very high UPS and very low DOWNS (does that make sense?).  As far as the downs, my itching episodes have continued and in some ways have gotten worse (felt more intense and lasted for longer).  My eczema is now covering most of my arms and in addition, so much of my neck, chest, and face feel raw and burnt.  I actually went to my general practitioner to see if she could offer any options for itching relief BESIDES steroids, but alas, to no avail.  I think that she is wonderful and so very kind and has definitely been such a help with health problems in the past, but in regards to my eczema and topical steroid withdrawal, I had a feeling that she was just going to prescribe me steroids… Which is exactly what happened.  I tried to explain to her about my leaky gut and topical steroid withdrawal, to which she just smiled and nodded, but then she wrote me a prescription for a round of oral steroids (Prednisone) and then 4 months of a steroid cream for maintenance… 4 MONTHS?!?!  Of something that I believe worsened the eczema I already had?!  No way!  I couldn’t believe it and was very discouraged after that visit.  I knew that she was just trying to help the only way she knew how, but it was also confirmation to me that I really needed to seek alternative treatment options and guidance to help me through this season.

IMG_6517

The infamous “red sleeve” that plagues many people going through TSW.  Itching, burning, red skin that covers the arms and stops just at the hands (sorry, it’s not a pretty sight…)

Alright enough with the downs, let’s talk about the ups!

I recently discovered the amazing LARABAR – gluten-free, dairy-free bars that taste amazing!  I’ve tried most of the flavors, my favorite being the Chocolate Chip Brownie Bar.  They are pretty pricey, so I try not to get buy them all the time, but I was feeling particularly ambitious yesterday and had some of the ingredients on hand, so I decided to make a small batch.

photo 2

I WANT TO EAT THEM ALL.  AT.  ONCE.

I just put 1 cup of pitted dates, 1 cup of cashews, and a handful (or maybe 2?!) of dairy-free chocolate chips into my food processor and mixed them up until it became a crumbly, moist dough.  Then I just pressed them down on a piece of plastic wrap in a piece of tupperware and stuck them in the fridge to set.  I can’t remember how long I left the in there, but when I took them out, I cut them in the rectangles and put them into bags for the week.  And then I opened one of the bags and ate one.

Another one of the ups of the week was that I’ve been able to get some sleep (not a complete night’s worth, but a whole lot more than before!).  Some nights were with the help of Benedryl, but some others were without it – I still see that as progress!  I still wake up around 1:30 or 2:00AM, depending on when I fall asleep, but after that, I’ve been able to sleep from around 2:30 – 3:00AM to whenever I have to wake up in the morning.  I am so thankful to the Lord for answering that prayer.

As always, the prayers and encouragement from my family and friends help me through the days and remind me to keep going, even when I want to just sit and cry, wrapped in my favorite blanket and covered in ice packs.  On Sunday, I got choked up when my sweet friend Emily and her family gave me a basket full of things to keep my mind off the itching or when I can’t sleep.

photo 3

I can’t wait to break out those colored pencils and coloring book!

My husband, Kyle has also spent several mornings and evenings holding ice packs to me during my itching episodes and giving me much-needed and much-appreciated pep talks.  During one itching episode in particular, I just spilled everything – all my worries, fears, and frustrations – that had been building up over the past month.  Why is this happening to me?  When will this end?  Is it going to get worse than it already is?  Will I be able to endure this for however long it takes for my body to heal?  What if it gets so bad that I have to take leave from work?  I don’t feel like myself… I feel like I can’t get anything done.  I hate dreading going to work, because I love my job and my kids, but I don’t have the energy to put into it everything that I want to… I’m self conscious in front of people because my face is so red and flaky.  I’m frustrated whenever I have to shower because I get anxious about my skin stinging afterwards.  How can I go back to grad school this year  if I’m still going through this?  I just want this season to be over.

It felt good to release all those worries and fears.  I needed to do that.  Afterwards, Kyle and I prayed together and he encouraged me to keep going, that it wouldn’t be forever, that we’d go and seek other treatment options, and most importantly, that the Lord will provide.  I thought it might be longer into our marriage before we’d go through such a season as this, but what a blessing it has been, and how humbling to experience the love of Christ through my husband’s steadfast support and tender care.

I am hoping to visit a dermatologist that my mother knows for any insight that she could offer and I’m also hoping to visit a naturopath to help guide me and provide any insight on other things I could do to help with my withdrawal from topical steroids.  I hope these visits go much better! 🙂

I’d like to end this post with a hymn that we sang at church this past Sunday.  As soon as we started to sing it, tears filled my eyes.  What hope, what surrender, what rest we can find in our sovereign Lord!  Even though I don’t understand why I’m going through this season, and why others must experience  much more difficult trials in this life, I can find comfort that my God is good, all the time.

Whate’er my God ordains is right:
His holy will abideth;
I will be still whate’er he doth;
And follow where he guideth.
He is my God: though dark my road.
He holds me that I shall not fall.
And so to him I leave it all,
He holds me that I shall not fall.

Whate’er my God ordains is right:
He never will deceive me.
He leads me by the proper path;
I know he will not leave me.
I take, content, what he hath sent.
His hand can turn my griefs away,
And patiently I wait his day,
His hand can turn my griefs away.

Whate’er my God ordains is right,
Though now this cup, in drinking,
May bitter seem to my faint heart,
I take it all, unshrinking.
My God is true; each morn anew.
Sweet comfort yet shall fill my heart,
And pain and sorrow shall depart,
Sweet comfort yet shall fill my heart.

Whate’er my God ordains is right.
Here shall my stand be taken.
Though sorrow, need, or death be mine,
Yet am I not forsaken.
My Father’s care is round me there.
He holds me that I shall not fall,
And so to him I leave it all,
He holds me that I shall not fall.

As always, thank you for taking the time to read 🙂  I wish you an AWESOME week ahead of you.

RAWK OUT AND ROCK ON!

Love,

Hannah

Here’s to Hope.

 

hope

It is 1:45AM as I begin to write this.  Just a couple months ago, this situation would have been drastically different.  I would have been OUT LIKE A LIGHT, probably drooling on my pillow, all the way to morning, when I would hit the snooze button for my phone alarm about 10 times (I’m not kidding you).

These days, it is a rare occasion to sleep through the night.  My typical sleep schedule looks something like this:

11:30PM     Go to bed with the humidifier on and at least one ice pack.

1:00AM     Wake up, have an itching episode, use the restroom, re-moisturize, exchange my ice pack, then attempt to go back to sleep.

1:15AM – 2:30AM     Toss and turn and try to fall asleep (usually by this time, the itching has subsided, but still there)

2:30AM – 4:00AM     Sleep, but the “in and out of consciousness” kind.

4:00AM     Wake up, re-moisturize, maybe use the restroom and maybe exchange my ice pack, if I can will myself to get up.

4:00AM – 6:30AM     Sleep (the REAL deal)

6:30AM     WAKE UP!!!

I’ve tried drinking chamomile tea during the week and taking sleeping pills on the weekends, which have helped a few times, but nothing has seemed to work consistently.  I’m sharing this in hopes that if you see me during the day, and I look like a zombie (which reminds me…WALKING DEAD COMES ON NEXT WEEK!) or I don’t know what day it is, or I’m yawning incessantly (I promise, I’m listening), you would show a girl some grace… hehe!

12694669_10205880850400165_5819102958629602373_o

Who needs the Super Bowl when you’ve got a HUGE FRUIT BOWL?!  Just kidding… but seriously, fruit is awesome.

After doing some more research, I’m pretty sure that in addition to my body going through the healing crisis (more info on that here) due to my mostly raw, vegan, highly alkaline diet, I am experiencing symptoms of Topical Steroid Withdrawal, aka Red Skin Syndrome.  Here is an excerpt from the ITSAN website (an organization created to support those going through this withdrawal):

Recuperating from RSS is often extended and incapacitating. Many people experience painful symptoms and become covered in a full body rash or flushing that can last for weeks or months before clearing. Most have symptoms that are cyclical until the skin makes a full recovery.  Some may not be able to participate in normal activities for many months. Work, school, and family life will be disrupted by extreme fatigue, itching and burning skin, and an erratic sleep schedule or insomnia. The appearance of the skin may also affect the desire to be seen in public.

I used topical steroids and had one round oral steroids on and off over the years to treat my eczema.  While steroids are extremely helpful if used correctly and for the right amount of time, too often eczema sufferers use their creams beyond the 2-week time frame, to help maintain clear skin (which is what I did).  Eventually, the skin builds up a tolerance to it, which often leads to a new prescription for a more potent steroid, and the vicious cycle starts all over again.  In addition to that, the immune system is weakened and all the toxins from the creams can get trapped inside the body because they cannot be eliminated properly.  It is during withdrawal that the body has to purge itself of these toxins and readjust to not depend on the steroids.

While my symptoms are not nearly as severe as some cases I’ve seen on the internet (and I pray they don’t develop into that), it is still very difficult, discouraging, humbling, and scary.  Just this past week, I experienced an intense itching episode that had me on the floor, sobbing, clinging to my husband while he held ice packs to my neck and comforted me.  The parts of my skin that I thought started to heal are red, swollen, and itchy again.  My lack of sleep is starting to get to me and I get scared that I am going to be this way forever…

BUT I HAVE HOPE!

My first and most important source of hope lies in my precious Savior, Jesus Christ.  While I do question why I am going through this, I am constantly reminded of His provision, His wisdom, His sovereignty, and His grace, mercy, and love towards me.  I have been forgiven of my sins and have been given the gift of eternity with Him – what have I to fear?  I know God’s character through His Word, and I know that He ordains things for a purpose, though sometimes the purpose of the difficult things we go through may never be revealed in this life.  Even if I may never find out why I am going through this experience, I pray that I can still glorify Him by how I deal with the hard parts and by learning to praise Him in the good and the bad.

Secondly, I have found such hope from the amazing people in my life!  My husband and family have been an incredible support to me, always checking in, making sure I have what I need.  Some of my coworkers who have seen this blog have been kind enough to share their own health struggles and things that have been encouraging to them.  My church family has let me know that they are praying for me.  My friends find ways to help me take my mind off my itchy skin and help me laugh, even though I often want to cry.

Just today, I went to my friend, Natalie’s, to make some Valentine’s Day cards.  I decided to leave my ice packs at home because I didn’t feel like lugging my cooler bag with me, but I ended up having an itching episode when I was there.  When she started to notice me scratching, she said, “Let me see what I have!” and proceeded to look through her freezer for something cold.  After digging through frozen vegetables, she finally said, “Here!  Will this expired frozen fish work?” (they were individually wrapped, haha).  That made me laugh so hard, even though I felt like scratching my skin off, and it ended up working so well!

I have hope that things will eventually get better, even if I will always struggle with eczema to some extent.  I have hope that this experience will help me to become a better follower of Christ and a more sympathetic human being to those who suffer (and I know there are many who suffer much more than I).

Again, I know that there wasn’t much about food in this, but I promise, those entries will be coming soon!  It’s about time for me to attempt my second bedtime.  As always, thank you for taking the time to read.

Here’s to hope.

RAWK OUT AND ROCK ON!

Love,

Hannah

Bananas, Bella, and a Blizzard.

icecreamm

My first attempt at homemade chocolate coconut ice cream… SUCCESS!

I don’t know about you, but it has been one, long, boring weekend…

JUST KIDDING!

It has been one, long, awesome weekend – full of ups and downs, but still awesome!  All the snow I had been wishing for this winter finally arrived, by way of storm Jonas.

photo 1

My husband, all geared up, ready to brave the storm!

In preparation for the blizzard, it was fun trying to figure out what foods to stock up on for the weekend, since I knew we probably wouldn’t be able to venture out until Monday or later.  In the past, I would’ve loved to stock up on Ramen noodles, bread, cheese, chocolate chip cookies, and jalapeño potato chips!  Instead, I made sure to get more bananas (you can never have enough!), apples, spinach, baby carrots, lentils, beans, and almond milk.

I also picked up some cans of coconut milk and made some homemade, no-machine, chocolate coconut ice cream (check out the picture up there and check out the recipe here)!  It was super easy to make and super delicious!  I’ll have to keep myself from making a batch every week, haha.  The next dessert I want to try is banana ice cream, which is even easier – you just peel and freeze some bananas, blend them up, and that’s it!  Really, I’m not kidding you!

IMG_0807

Dad and Bella, thoroughly enjoying their snow day.

While this snowy weekend was great for catching up on cleaning, searching for new recipes, and getting time to just sit, it was a difficult weekend in regards to my eczema.  I was really discouraged when I had a crazy long itching episode today where my face, neck, chest, and arms all flared up, just when I felt like things were taking a turn for the better this past week.  I have cried several times in the past couple of days, out of sheer frustration with the itchiness, the lack of sleep, and just wanting this season to be over.  I know that there are many people who are going through much worse than I and I wondered what helps them to get through.  Then, I thought about what, or rather, who, has been helping me to get through…

First and foremost, I know that my Lord, Jesus Christ, has been giving me the strength to make it through my days, especially the days that I have to go into work.  I’ve been going to work with a heavy heart this past month because as soon as I get it into my classroom, I am already wishing to be home on the couch, just resting.  I enjoy my job and I love my kids so much, but it is so hard to give my all when I am not feeling 100%.  I have to pray so many times throughout the day, Lord, please get me through.  Please help me to focus and be patient with the kids.  Please help me not to scratch and please help me have the energy to make it fun for them.  And of course, at the end of the every day, I can say that yes, the Lord has gotten me through.  The following verse has been such a reminder of God’s sufficient grace and constant provision in my life.

“My grace is sufficient for you, for my power is made perfect in weakness.” 2 Corinthians 12:9

Secondly, I know that my amazing family and friends have been getting through this tough season.  So many friends have taken the time to not only pray for me, but to tell me they’ve been praying for me – that means so much.  My family in MD and NJ have been constantly checking in to see how I’ve been doing and to encourage me, as have my sweet co-workers.  I’m not sure they know how much their texts, calls or the few minutes that they stop by to talk just brighten my day.

And, there’s my wonderful husband, Kyle.  I don’t brag about him much on social media, but I will now – haha!  He has been so patient, so helpful, so encouraging, so caring… I could go on.  He’s comforted me through all my moments when I’ve been full of snot and tears over my eczema; he’s washed extra dishes after I’ve gone crazy in the kitchen trying new recipes; he’s been the one to gently remind me to “stop scratching,” even went I want to scratch so badly; he tells me that he’s proud of me for being so disciplined with my diet; he calls me beautiful even when my hair is a mess, I’ve got bags under my eyes, my skin is so red, flaky and inflamed, and I am engulfed in blankets; and most importantly, he reminds me to persevere and to lean on Christ.  I couldn’t have asked for a better man to journey through this life with.152-portraits

Oh, I forgot to add Bella, episodes of The Office, recipes from Raw. Vegan. Not Gross., and ice packs to the list.  Those have also been helping me to get through 😛

So this post took a different turn than I was expecting (I actually didn’t know what it would turn into, haha), but that is okay.  I will probably post again very soon since I’ve got tomorrow and Tuesday off too… WOOHOO!  THANK YOU JONAS!

As always, thank you SO MUCH for taking the time to read this!  My ramblings don’t amount to much, but I appreciate you reading them anyhow 🙂

I wish you a warm, safe, delicious, healthy week ahead of you!

RAWK OUT & ROCK ON!

Love,

Hannah