We made the short drive 2 hours straight south from Cottonwood to Scottsdale, AZ. Our home for the next 4 weeks is Eagle View RV Resort. Our original plan did not have us visiting Scottsdale, but sometimes plans have to be adjusted.
The past few months had us questioning whether or not we should continue our epic adventure. Here’s why…
In late July, Addie developed a rash on her back that began as a small spot and spread across her back. We took her to the urgent care in Portland, OR and they described it as the Christmas Tree Rash and prescribed Benadryl, Claritin, and steroid cream. Over the next 10 days Addie took it easy, got lots of rest and and spent most of her time inside. We used the cream twice a day and she took lots of allergy meds. Her rash did not improve. It continued to spread from her back to her limbs and torso; it became painful, felt like needles poking her.
The next morning on August 10th, we were the first in line at the local urgent ER in Port Angelos, WA. They were unsure what it could be, but took lots of blood and said we should see a dermatologist when we get home. They prescribed an oral steroid, antibiotic ear drops (for ear infection) and more steroid cream.
We were excited to see that the drugs and cream were working. The rash quickly began to dry out and clear up. Addie seemed to be on the mend, just having had some freak rash that needed antibiotics to knock it out.
But then just a few weeks later in early Sept, it was back, but looked a little different. We first noticed it on the back of Addie’s knees. They became bright red with little bumps that were oozy and weepy.
Within three days it spread up the back of her legs, on to her torso, inner leg and even her arms. We went to urgent care in West Glacier, MT and they prescribed Cephflaxin (antibiotic) and Prednisone (oral steroid). These drugs dried the rash and we were good again.
Until the end of Sept. when started to see small red bumps on back of knees, torso, neck and face. We used steroid cream on them and they did not get worse. But then within a week she had bumps at nap of her hairline and scalp. We continue to use steroid cream there.
A reoccurring rash that keeps changing in form is not normal. The not knowing what this was, and the not being able to make it stop, was killing us. We knew we needed to get her to a skin expert, a dermatologist, but we wanted to do that in a place with good doctors in case we needed to see more than just that one doctor. We decided that would be in Scottsdale, AZ. The earliest appointment we could get was Oct. 17.
As we made our way there, her scalp continued to get worse. It weeped so much that it looked as if she just stepped out of the shower. We kept it wrapped in a headband, covering the gauze pads, so she did not leak on her bed and furniture.
Our appointment with the dermatologist was just a week away, but we knew we needed more support now. We contacted teladoc, they suggested steroid cream and hydrocortisone for her face and neck. It was a long week with no changes.
Finally, we saw Dr. Cumsky in Scottsdale; she was amazing! Immediately seeing our concern and wanting to help us figure this out. She took a biopsy from both Addie’s arm pits and ran lots of bloodwork. She prescribed Flocinonide (topical glucocorticoid) for her scalp, Doxycycline Hyclate (antibiotic), and Prednisone (oral steroid) all as things to get her body to calm down until we had the test results.
The meds worked well as we waited for the official diagnosis. Within just a week she looked and felt so much better. Her hair dried out, but also fell out. Which was extra unnerving as we waited.
Finally on October 30th, we got the diagnosis, severe Plaque Psoriasis. Relieved to finally have a name for the rashes, weeping skin and what we now know are plaques, we set out to do some research. Dr. Cumsky wanted to start her on a biologic (which is an injection). We quickly figured out that this can be a very effective, but expensive treatment option. Using a health share co-op instead of health insurance, we had limited options for coverage. Each shot costs between $600-$18,000 (that is not a mistake in the number of zeros). We landed on Yusimry, a brand new Humira generic. It would take 3-4 months to take effect, so she would need to be on another round of prednisone(3 weeks) and cyclosporine (until January) to control her psoriasis temporarily as we waited for it to take effect.
Addie was feeling better, we had answers, a plan, and a great doctor to get her back on track. It turns out Psoriasis is fairly common, 2% of all people living in the US have some form of it. It is a chronic (long-lasting) disease in which the immune system becomes overactive, causing skin cells to multiply too quickly. It will require constant monitoring, but is manageable and non-life threatening. We celebrated!
With the medicines taking effect, Addie was starting to feel and act like herself again. She began doing her jobs again, such as feeding the dogs dinner.
She was back to doing some of her favorite activities, including reading in the pool and swimming laps.
With a renewed focus on all of our health, we decided to try our hand at pickleball. We had a court just outside our rv door and the weather was perfect with bright sunshine and low 70s every morning. We got hooked, playing everyday for 3 weeks straight.
Addie even came out to join us some days.
Most mornings after we played, it was warm enough for a dip in the pool.
Halloween at the RV park was a first for us. They hosted a trunk or treat for the families in the park, as well as the local community. Addie got in the spirit of things and had a ball handing out candy.
Being stable for such an extended period of time gave us the opportunity to take advantage of some of the local activities. We attended a mixology class that turned out to be more of just a drinking event than a how to mix a drink class. The drinks were good, so we did not mind.
We happened upon one of the most amazing craft fairs we have ever seen. The town of Fountain Hills twice a year hosts the Fountain Festival of Fine Arts and Crafts. This festival has hundreds of booths of expert artists exhibits. It is a competition show where artists are judged for their work. We spent hours checking it out on a beautiful Saturday afternoon.
We were excited to participate in a “Paint Your Pet” class offered by a local artist. It was tedious work, but it paid off. It was so much fun creating our masterpieces of Caper and Chance.
We spent lots of time sitting outside enjoying our site at the RV park. The spot next two us was empty most of the time and we had a large space to put up our canopy for nice shade.
Scottsdale was the perfect spot for us all to rest, recharge and get a little healthier. We are so grateful for this time and all the wonderful experiences we have shared together.
With Addie’s health under control for the first time in about 4 months, we decided it was time to continue our journey. The dogs got a haircut in preparation for what we thought might be warmer weather as we headed to San Diego to meet up with Makenzie and Ella for Thanksgiving.
Here we come San Diego!
Whew! I was worn out just reading about your challenge. Bless your hearts. So glad that Addie is on the mend. She’s one tough cookie. I continue to live vicariously through your posts.
What a great team you are! You are always so proactive for Awesome Addie in getting answers to her health and discomfort. What a challenge for her. We hope she is comfortable in her last teen year! Your explorations and adventures are always fun! Love your portraits of ‘the boys’ at “Paint Your Pet”. The mixology class and market looked fun. We miss sharing life and are so disappointed to miss the gathering with you in Florida. It will make the next plan all the sweeter! Hugs and misses! WE
Wow what an experience you all are having. Bob