Now It’s the Future

Hello friends! I’ve been drafting this post for months. Possibly close to a year. I just haven’t known how to get the feelings and sentiment to flow cohesively. I’m still not sure they will, but I’m at least going to try.

Some of this will be not new information for those of you that have been long-time followers. For others, it will be a history lesson of sorts.

After my first eight years with Scleroderma being lead by up to 23 pills a day plus various other treatments like immuno-ablative chemotherapy and still experiencing progression, I decided to try a new approach. Though these treatments most definitely saved my life, on the whole, I was still not as well as I’d hoped to be. 

For about a decade now I’ve been doing my best to manage my health and life with Scleroderma with as little use of pharmaceuticals as possible. Through diet and lifestyle changes I’m down to three pharmaceuticals for managing my heart and my thyroid. I had to resort to pain-killers in 2020 when an unusual run of ulcers occurred. Considering where I've been - I’m OK with all of this. 

This path makes my heart and conscience happy as to how I’m taking care of my body. I didn’t know then what I know now about the issues that can arise down the road as a result of the treatments that kept me moving and kept me alive. Even when I did “know” then, I was young and the tools and resources available today were not available then. To be honest when you’re in your twenties and being told you likely won’t survive a year, it can be quite easy to gloss over the things that might come in the future because you’re too worried about surviving so you CAN have a future.

Well, now we’re years down the road from then and dealing with “consequences”. Years of Prednisone, Nexium, and the chemo therapy have zapped my bone density. I’m soon to be 44 with the spine and hips of someone in their 80s and 90s. I’ve tried to be rigorous with diet and weight-bearing activities to regain bone health, but I’m just not there. So, to hopefully bridge the gap, still hoping I can eventually get there naturally, I’ve accepted that I will need pharmaceutical help. I’ve done my homework. At this stage and age, I’ve educated myself on what can happen with these types of medications. This decision has not been made lightly.

Today I received the call from my primary care doctor’s office to schedule my first injection. The emotion and feeling of defeat and surrender that comes with accepting that decision resurfaced and the finality of making the appointment fueled a conversation with a friend. We talked about how past treatments got me here and needing other treatments that I don’t necessarily want and where that will lead in the future. During the conversation she said the words that this post needed to finally bring it to life…

 “Trading present for the future. Back then 

 chemo was what was needed. Future issues 

 were in the future. Now it’s the future.”

As I’ve been holding off on this treatment as long as possible and reflecting on the past treatments, I’ve frequently come back to the list of side effects that can come from that past use of chemotherapy…. On the forms you confirm that these side effects have been disclosed to you …  These can include:

* Infertility

* Cataracts,

* Sexual side effects and early menopause

* Thyroid problems

* Lung or bone damage

* Cancer

The choices we’ve had to make to survive don’t necessarily make things all rosy with unicorns peeing rainbows and shitting glitter. Instead we’re left with any number of the list above. Another Scleroderma friend underwent a stem-cell transplant years ago and while it saved her life, she’s now fighting lung cancer. It’s giving her a run for her money and she’s been faced, yet again, with the gut wrenching decision of “what to do?”



That’s where we’re often left  … “What do I do?” For each of us that will be different. For us all, It will never be easy. We’re trying to live in the moment and not to worry about the future until it happens. 

And then “Now it’s the future.”



We do our best with what we have as we try to persevere. As we try to rock on.

💋🤘🏼