Help Heather & Juliette Stabilize On Disability

Did you know that the Lupus rash isn’t always in a butterfly pattern? I didn’t so, when this happened to my face I never suspected that it was a signal that I was suffering from a Lupus overlap with RA disease called, Mixed Connective Tissue Disease. 

My body has an autoimmune response in every body part with connective tissue, which is basically all of it. Learning how to navigate life with this hasn’t been easy. 

This is our story...

Unfortunately, my marriage to Juliette’s father didn’t make it through the coronavirus in 2020. Juliette and I stayed at New Life Center, a domestic violence shelter, during the beginning of the pandemic while I fought and won the temporary hearing for our divorce. Although Juliette asks if we can ever move back to NLC because she loved it, I would rather not. It’s a wonderful facility but I don’t want us to live in a shelter, ever again. We’re facing that reality now but Juliette doesn’t know. I’m still working from all angles to save our home.

Rebuilding a life we wanted…

I was fortunate to gain employment with friends starting a business. We were able to rent a 1 bedroom apartment for ourselves by August 2020 and get out of the shelter fairly quickly. I’m eternally grateful to Morozko Forge for hiring me while I was still living in the shelter. Their gifting me my relationship with the cold has been monumental for my growth. I’ve been humbled by their compassion for me and eternally grateful for my time with the company.

Finally REAL answers…

In November of 2020, another flare hit with a rash and I was able to find a doctor who was smart enough to check me for everything that looked like Lupus we finally found the explanation for my recent health issues, Mixed Connective Tissue Disease with Fibromyalgia. I slept the winter away and did everything I could to learn more about this condition. Mostly Dr. Google, nothing fancy, and to learn how to get healthier.

Still, I persisted to rebuild our life...

I was able to get back to work after the winter passed and was able to move us into my favorite apartments in Phoenix. I’ve always wanted to live here and Juliette thinks it’s great to live in the city. She is still going to school in South Chandler, the suburbs. We’re doing all the Phoenix kid adventures and we love being closer to our Grandma.

When Juliette saw that she has her bathroom off her bedroom, it’s a dual master layout, she was so excited. We plastered the upstairs bedrooms with mermaid decals and Marilyn Monroe artwork.

We also converted the mini bar in the living room into our art corner for washing paintbrushes and storage of supplies.

We were even adopted by some local feral kitties and we’ve rebuilt quite a beautiful little life here together. They have all been fixed and I have to do everything I can to save our world.

But wait! There’s more…

Spring of 2021, we start discovering that I have more issues relating to migraines and I’m exhibiting the same symptoms as my mother’s neurological condition, Charcot Marie Tooth. I’ve been referred to Barrows for testing. I’m also working with an orthopedic surgeon, physical therapist, and pain specialist for my hip, lower back and neck. My mobility is extremely limited.

Life said it was time for me to slow down and work on my self-care. Possibly, learn a thing or two about how to ask for help, and also, spend some time with my mom. She’s 81 and Juliette is 8, this time with them is limited. I’m grateful to have this time while we work out the best way to get my body working, again. These programs have been so much trouble for me that I’ve requested a social worker. A care specialist was assigned to me through Mercy Care to help me, as well.

Acceptance isn’t easy…

It’s extremely difficult to watch your body break down like this at 42yo. Coming to terms that I needed methotrexate to keep my hands and arms working was a whole battle of its own. I take 25mg per week, which is high for regular use to treat RA. I searched far and wide for a solution to the “methotrexate hangover” (side effects) but I’m just a part of the people who can’t get rid of them. I’m grateful to Savannah and Sean at the NLC aftercare center for the therapy services and guidance during this process.

My next steps with my health...

I’m starting with a new rheumatologist who specializes in patients who have combined issues with neuropathy. I meet him on Aug 22nd to hopefully find a better solution than methotrexate. We're still waiting for my insurance to approve the MRI that my orthopedic surgeon needs and all of my health projects are sitting in a pending status for another month. I've been spending a lot of time with my mother to assist her with her recent mobility issues.

Better updates coming…

I’m learning more about how to share our story on here and other platforms. I hope this is a better explanation than before, pardon the dust as I learn. I can be found on most social sites under Sonoran Idunn. Please, add me.

I’m determined to recover my health and be able to run a 5k and dance, again. I have a lot of living left to do. Your support in these extremely challenging circumstances has given me hope that I won’t need to tell our daughter we’re moving out on Aug 4th, when I pick her up from her dad.

Thank you for your continued support through this nightmare. I hope this new intro explains our situation better. I will continue to make updates as our situation unfolds. I’m hoping that the funds are available through our daughter’s school because otherwise, we will need to store our things and stay at the UMOM Shelter.

My ultimate goal is to stabilize us on disability and these state programs and then, go back to school for a degree in business. I was at Scottsdale Community College in 2020. I would like to get back there.

Sharing our story with your friends has been a HUGE help. Thank you so much to everyone who has helped! I’m dropping flyers wherever they will let me leave them. Praying for a miracle in the next week.

I will continue to update this intro and attempt to make a video and say hello soon.

Much Love