I Have Clear Skin, Hair, and Can Sweat Again-DUPIXENT IS AWESOME!

For my quilting followers, sorry this isn’t quilting, but I had to share this information somehow!  Hopefully you can pass it along to a friend who deals with this!

Imagine waking up every hour itching and feeling like your are on fire. That used to be my nights pretty regularly.

My mom said I suffered from eczema as a baby and child.   As I got older, I had lots of allergies especially hay fever.  I don’t remember having a lot of trouble with my eczema as a teenager but after I was married in my mid 20s, I started having flare-ups.  I used topical medications to help but if it got bad, I’d do a round of steroids and I’d be like new.  I ended up just learning to live with it and didn’t think anything of it.  I never could figure out what my triggers were.

I really didn’t have too many problems in my child-bearing years but in my mid 40s it started back up and was getting worse so I was allergy tested.  I’m allergic to dust and dogs.  I had an older Labrador Retriever but I couldn’t give her away and how do you avoid dust?  Well after our dog died, my allergies didn’t get better.  In my late 40s, I was miserable…I’d get out of the shower BEET RED and had lost my hair!  It was awful.  I finally got patch tested and it turns out I am allergic to methylchloroisothiazolinone, quaterium-15, formaldehyde, and mercapto mix.

So eliminating all the products that contained methylchoroisothiazolinone and all of those bad chemicals/preservatives helped my redness go away!  I now pay attention to ingredients in all beauty products and go natural. By going natural that helped but the red, splotchy, itchy skin still plagued me especially when I’d get warm.  I’d itch at night if I got the slightest bit warm and would wake up feeling like I’ve been sunburnt.  There were days I couldn’t go to work because of the severity of pain and redness.  It hurt to wear clothing especially undergarments.  I bought a ChiliPad to keep the bed cool at night and that helped but not completely.  That was $400 and worth it….helped with menopausal night sweats too!

On top of all of of my skin problems, I was diagnosed with alopecia areata seven years ago and have lost my hair three times.  I wore hats at first but as the hair really started falling out I’d resort to wigs.  The most frustrating thing about alopecia is that it is a health condition and wigs were not covered under insurance for alopecia….you have to have cancer in order to get a wig reimbursed.  Seems crazy, huh?  I believe that NAAF and our government is working on that now!

Normally my hair starts to grow back within 9 months but this past bout seemed to take twice as long.

In October 2017, I heard about a new drug for eczema called Dupixent/Dupilumab, so I did my reserach and then talked to my dermatologist and decided it to give it a try.  I am her first patient to be on this drug.  The drug came out March 2017.

I’ve been through every other treatment known to mankind…from steroids to topicals and the ONLY thing that worked were the steroids.  I’ve eliminated gluten from my diet and cut way back on dairy products and even started eating a paleo meal plan. My eczema was still head to toe…body completely red and painful and so very itchy.

 

When the eczema affected my face it was awful!  It seemed to be pretty chronic and rarely went away.

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The photos below with my hair were taken in January before my injections began.

On January 17, 2018, I gave my first two injections of Dupixent.  A nurse came to my house to educate me on how to do it and it was so easy.  Needles don’t bother me anymore after having so much bloodwork done and allergy shots.

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On January 31, 2018 I gave my next injection.  I was told I wouldn’t feel much but honestly, my skin feels softer and itching had been reduced.  I was super excited at the progress already!  These injections happen every two weeks.

February came and went and no side effects and still improving and so is my sleep!

March 11-I had a slight flareup (nothing like I’ve had before though) and ended up with pink eye.  I treated the pink eye with Pink Eye Relief drops which worked very well!  Itchy eyes which could lead to pink eye and cold sores were some “side effects from this drug.  But so far, I’ve only had pink eye once and a cold sore once.  I take L-Lysine to help with the cold sores.

April 14 – had a big bowl of dairy ice cream and noticed a little breakout on my face and neck.  (testing dairy)

May 2 – Used Cetaphil the night before and woke up with hives on my torso and my inner elbows.  I usually use Cerave but was almost out so I tried Cetaphil.  I’ve been able to use it in the past but because of my sensitivity I decided to stick with what works…Cerave!

Despite these small flare-ups, my skin has been soft as can be, not red, splotchy, and itchy and the best thing is that I am sleeping at night without medication!  AMEN!  God is good! Thank you for this miracle drug!

May 3-I get a call from my dermatologist telling me that I’ve been denied and wants to rescore my progress.  I’ll have had two more injections and she expects to see complete improvement.  Talk about a blow!

Now it’s May 5 and I just got a letter from BCBS that my next pre-authorization of this miracle drug has been denied in writing.   Living with this type of atopic dermatitis has been so miserable! I don’t want to be without this medication.  I’m thankful I’ve been documenting this process to publish on my blog!

Dupixent has been a miracle for me!  I wake up refreshed in the morning, Wearing any type of clothing is easy for me now.  I’ve had SO many people compliment my clear skin.  I always had a chronic red, splotchy face except for when I was on prednisone.  It is now so nice to get out of the shower and my skin to not hurt.  I’d have to go days without showering sometimes because it hurt so badly.

So here’s this week’s pics of my clear skin! I can wear shorts again and not be embarrasssed by the red splotchiness.

AND BEST OF ALL….my hair, eyebrows and eyelashes are back and fully this time!  Not sure if this medication has helped it but I did hear there is a clinical trial of this drug on alopecia patients so it wouldn’t surprise me!

It’s May 22 and GUESS WHAT!  Insurance has approved me for another year!  AMEN!  It’s a NEW ME and I feel great!  Oh and by the way, going off dairy has eliminated any minor flare-ups.  Since my daughter is vegan, I tried her cheese and it’s delicious!  Also there are some great yogurts and ice cream made from coconut milk and almond milk too so I don’t feel like I’ll miss dairy!  I am also back at the gym and can sweat like crazy without any burning or stinging!

If you are reading this and have excema, talk to your dermatologist!   The Dupixent My Way Program is awesome too!  I have a registered nurse assigned to me that calls me to remind me of my injections, answers any questions, etc. too!  They have a co-pay assistance program and I pay $0.  Normally it would be about $80 per month which is SO worth it with my insurance.  This drug is crazy expensive too! BUT there’s hope and healing!

 

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62 Miles, 125,154 Steps at the Largest Quilt Show!

Months ago, I was invited to work on the Education Team at the International Quilt Festival in Houston, TX.  I was told it would be hard work, long days, lots of walking, and may not get time to eat.  What I didn’t know is how inspiring it would be to meet some of the internationally known teachers, take art quilt classes that were amazing, being able to see all of the exhibits and magnificent quilts I’ve ever seen, and work with a great team of ladies (see top photo).

So what kind of work did I do?  

I put up flip charts and markers in every classroom, added large foamcore boards to rooms for teachers to pin up their art, filled buckets of water, set up several special events, checked in keys from teachers, checked in students at lectures and luncheons, clean up after events, pack up supplies, put plastic on lots of tables, picked up, delivered irons and whatever else they needed me to do.

Here are the few amazingly fun things I did:

  • I attended 3 hour long arm class from an awesome teacher, Jodi Robinson
  • I attended an all day class with Melinda Bula called Fabulous Fusible Flowers and I was her Teacher’s Pet and checked in her class and handled evaluations. She even gave me a beautiful pattern for being her “pet”
  • Observed the Iron Quilt Challenge which was super fun!  Think Iron Chef but with quilts and not food!
  • Heard some of the most amazing talks from the most amazing quilters: Cheryl Sebolda, Cindy England, Karen Kay Buckley, Maria Shell, etc.
  • Attended the Winner’s Circle and saw the quilts being revealed.  Top prize Best of Show won $12,500.  NICE! Maybe that’ll be me someday! IMG_3833.JPG
  • Shopping….over 1000 vendors but I defintely didn’t get around to all of them.IMG_3722
  • Viewed hundreds and hundreds of gorgeous quilts and exhibitions.

We got some cool perks too:

  • Up to 10 yards of free fabric from two designers, Alexander Henry and Cotton and Steel to make garments for us to wear and Indygo Junction gave us a choice of a free pattern so I chose a kimono.
  • Free hotel and transportation to and from the airport
  • Faculty goody bagsIMG_3703
  • Gifts from various artists
  • IQF Show Bag and goodies
  • IQF T-shirt

The whole trip was very hard on my feet and legs….I ended up seeing the first aid and they told me to keep my right foot elevated and iced.  It was a little difficult to do that when I was about to catch a plane.  I did go to the doctor on Monday and it turned out not to be from standing on them all day…it was cellulitus.  So I got some drugs and was told to rest, ice and elevate for several days.  Just hoping that I feel better by Thursday for my weekend retreat.

I’ve been so blessed to spend a week with some fabulous artists and a super fabulous team that put on an awesome Quilt Show! I’m definitely interested in volunteering again next year, but maybe I need to buy a hovercraft or wear roller skates.

Now I’m ready to create….many light bulbs went off with various techniques that I need to practice on.  Now I just need the time to quilt!

Happy Quilting!

Sue Bee

See the gallery of beautiful quilts that were at the International Festival. This was just a few of my favorites out of 100s of others.

 

Turtle, Garments, and Quilts OH MY!

Hello blogging world!  I’ve missed you!  I have been so swamped lately with life in general, client quilts, personal projects, full-time job, kitchen remodel and the shingles!  It’s been a crazy few months!

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I did this turtle awhile ago since my other pin cushion was falling apart. It is even pink and green/Delta Zeta!  Here’s the pattern.

 

These are a few client quilts I recently completed.  The Miami Dolphins one was an old bedspread brought back to life with some new fabric!

In just a few short weeks, I’m headed to Houston for the International Quilt Festival to work on the Education team. One little perk was receiving up to 5 yards of fabric for free from two different lines: Alexander Henry’s Ghastlies, and Rifle Paper Company’s Menagerie.  I also got a free pattern from Indigo Junction.  I chose a cat fabric for my kimono especially since we are wearing it for Halloween! Now I just need to get me some cat ears!  I am really looking forward to the Quilt Festival!  It’s going to be a lot of hard work, but also a great learning experience!

And FINALLY I finished these king-sized quilts…the one on the left is for my bed and the other one is MY personal memory quilt.  Both of these have been entered in my local guild show, HQH Fanfare this coming weekend!  While in Utah this summer, I fell in love with Riley Blake’s Juxtaposey fabric line.  The quilt in the left photo below was taken in a quilt shop.  I just loved the bright colors!

Happy Quilting!  Have a great week!

Sue Bee

Weekend Retreat Projects

During my stitcher’s group quilting weekend at Grand Oak Retreat, I had great intentions of doing several projects but only was able to do two.  When I was in Utah back in June, I found the Riley Blake Juxtaposey fabric and fell in love with it!

This was the display at Pine Needles in Utah!

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I purchased five fat quarters at Pine Needles and ended up buying more on fabric.com.

I spent some time looking for a pattern that would really show off the prints on the fabrics.  This is the one I ended up using was called Mix It Up in the McCalls Quilting magazine.

I spent most of Friday cutting out the fabric.IMG_2934

Saturday was spent figuring out the layout and then sewing it all together!IMG_2945

This is not the final product.  By the time I got home and laid it out on my king bed, I realized I needed to add two more rows and then the borders.  IMG_2947

I can’t wait to finish this project!

I pieced this quilt at the retreat too.  It’s a Quilty Box project that I attempted to hand applique.   I wasn’t fond of the applique pattern that was provided so I created my own.

IMG_3002.JPGJust got my long arm back from getting serviced and I’m ready to quilt like crazy this week!

First International Order from New Zealand

Just finished and shipped this Cal-Berkley quilt to it’s owner.

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image_5Lauren Boyle, a New Zealand Olympic swimmer contacted me several weeks ago and asked me to create this quilt of all her California Berkley shirts.  She asked me if I could give her a discount if she promoted it on her Instagram feed for her 8,000 followers…of course I would!  She was in the US for a short period of time so I was able to complete it while she was here in the US visiting friends.

Do you have a large following on social media?  Ask me about a special discount to help me promote my business to your online friends.

 

A Life Lost Too Early!

You never know what tomorrow will bring you!  On March 26, 2016, Natalin Hammond had no idea that she would not see her husband alive again.

29-year-old Chad Hammond joined Metro Aviation in October 2015, and previously was an instructor at Cloud 9 Helicopters in Florida. He attended George C. Wallace State Community College, and was a 2005 graduate of Eufaula High School. Just three years ago, the Federal Aviation Administration recognized Hammond with inclusion in the FAA Airmen Certification Database. According to the website, the certification is for pilots who have met or exceeded the high educational, licensing and medical standards established by the FAA.

Chad was piloting the chopper in the wee hours of that morning picking up a victim from a car crash.  The weather was not good…a bit foggy which caused them to crash.  

Natalin contacted me to create a quilt in his memory through my Etsy store. I created a block that would go on his quilt in Photoshop.  The quilt represented things he loved like Alabama, hunting and flying.  She wanted to make a quilt that represented Chad’s life and give it to their daughter.hammond block

This is Natlin’s daughter with her quilt:

This is a quote from Natalin Hammond: “I absolutely love the quilt. You did amazing. I am taking it with us to the one year memorial next week. My daughter cried and squeezed it so tight. I really have no words other than Thank you from the bottom of my heart. God bless you.”

I LOVE WHAT I DO!  I love being able to provide such meaningful keepsakes for people.  Interested in getting a quilt like this?  I can defintely help you out!

Biking Memories Quilt

Just finished this quilt and will ship it early next week!  A client from Oregon asked me to create this memory quilt of her dad’s biking shirts. Her dad had been riding his bike for many years! He began to enter century and double-century rides back in the 1980s. He loved riding in the various competitions all over the different cities these rides were held in. He even did a RAM (Ride Across America) and was on the “sag wagon” that provided meals for the riders and would “rescue” any rider that was having difficulty and needed to drop from the race. The RAM is a grueling multi-day ride that only the “pros” enter. Lance Armstrong did these in his early days before becoming so famous. He continued to ride at least 50 miles a day even into his 80s and up to his diagnosis of pancreatic cancer.  Karen said, “He was a real good man and loved by many!”

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Ask me about preserving your special memories of a loved one in a quilt.  I can even add photo blocks and custom designed graphic blocks for as little as $12 a block and up. Visit my website for quilt styles and pricing.

Staying busy as a bee transforming t-shirts and clothing into memory quilts.