Howdy Ladies! It’s been a while!
Yes, I have been on an extended break. For a while, I haven’t been in a good headspace – right before I stopped writing, things came to a head, and I felt I needed to change my focus and get some things in my life under control.
In hindsight, much of my strife came about because I had turned gray and I wasn’t sure who that person was, and I was embarrassed by who I was becoming. Have you ever felt that way? With EDS and Lipedema, it can feel like your life is being chipped away at, and you no longer recognize the body you’re in – or the person you’ve become. For me, I’ve been able to hide many of my EDS and Lipedema symptoms, and I had hide my gray hair for a while as well. When I stopped dying my hair during Covid, I struggled with this very visual aspect of my aging.
I also gained a BUNCH of weight back, and felt like a “fraud” talking about how knowing and addressing your food sensitivities helps you lose weight, when I was once again heavy.
But, gaining the weight back also shows what a struggle dealing with this disease truly is. In some ways it seems so unfair that we need to keep adjusting and readjusting to the truths in our lives when it seems it’s just not a part of the “normies” world view.
In addition there were a number of other things going on with my husband and my lives:
- I had filed for disability, and had a tough fight with the disability office.
- I could see that my health was deteriorating, and was in a struggle to try to “fix” it or to accept it.
- I found myself in many (MANY) “fights” with healthcare providers, which had me questioning even many of the things I have previously written about.
- I found myself just burnt out with all of the social media issues that sometimes seem to arise on an almost daily level.
- And on a personal level, our family business, which much of my identity was caught up in, was shutting down.
- My husband changed careers and became a Firefighter (not that becoming a Firefighter is a bad thing – just that there was a lifestyle adjustment to be sure! Have you heard of a Kelly schedule?)
- We discovered a leak in our half-bath which had rotted out our floor boards
- We considered filing for bankruptcy.
- We thought we could lose our house
We don’t have children, but almost like an empty nester, I had to evaluate what was happening and pivot to this new life.
In some ways this has been a VERY long journey. And in other ways, it seems everything has fallen back into place in just the last 3 days.
I filed for disability in 2020. I thought a number of times that I should blog about the experience, and that my experience might help someone else. But, again, I was embarrassed and felt like it was ‘giving up”. But I was also conflicted, and some days I also felt like a fraud about my disability. Some days were horrible, and painful when I was in a flare. But what about the days when I felt good? Well, those days, you have that “I’m a fraud” feeling and overdo it and place yourself in a flare once again…. In addition, filing for disability was such a long and arduous journey, that alone took its toll on me, and I was very angry for a very long time. I was finally awarded disability in 2023, and received 3 years of backpay. And on our 2023 taxes, we had to pay taxes on the backpay, resulting in a $20,000 tax bill. So in some ways, winning still feels like losing.
From 2020 to 2023 before being awarded the backpay, my pay was drastically reduced, and I wasn’t sure how I was going to pay our bills. One of my projects while I was away from the group was to get out of debt, and I’m proud to say, we got out of debt in 18 months – even with my reduced pay and before the backpay.
Another project was decluttering. And during this part of my journey, I learned how to organize a space – for disability and when you’re just too sick to clean. I started in the kitchen – I still have much to do with the rest of the house, but I was able to “test” my new system back in July. I came down with a virus on July 4, and was incapable of cooking or cleaning for the rest of the month.
This cleaning and decluttering led me to creating our wills and naming an executor and Health Care Proxy. And naming a Health Care Proxy led me to asking if they would go with me to doctor’s visits and be an advocate for me. And THAT led me to creating my Medical Grab and Go book. And this has given me hope that future medical appointments will go better, and lifted much of the anger from my heart.
Being out of debt, my husband and I have been able to dream again, and we have begun traveling again, and creating additional dreams and goals.
Sunday I went shopping and bought a new wardrobe that fits me and my current lifestyle. Decluttering has shown me that it’s OK to shut off a previous part of your life and live and dress for the life that you are currently living.
So now look at me – a Gray-haired lady who is out of debt, planning and dreaming, prepared for this new chapter of life.
