Journal Entry by Kira Stokes — August 22, 2020
One of my dear friends from college has set up a care community for us. Their family has been walking the melanoma journey for 10 years, so they have been a sweet source of support to us and able to uniquely relate to where we are. We are so grateful for all of the help you all have already offered. Covid has presented new challenges to accept help, on top of the normal difficulty in knowing how to ask for and receive help. We are grateful to Courtney for taking on the role of coordinating this new care community for us! She graciously wrote a more detailed explanation about this website and how to use it on the last Caring Bridge update (August 16). For simplicity’s sake, I will start using only that website for updates. I believe you can register as a member on our website, and you will be notified by email when we post personal updates . Courtney’s update below does a good job of explaining it in more detail and she has her contact info available if you need help!
The new website is https://my.lotsahelpinghands.com/community/stokes-family-3/home
Here is a quick update on my health and our family. I will have a set of CT scans on Monday. As long as I stay distracted and don’t think about these, I am ok. If I start to think about the scans, I honestly can get terrified. Staying distracted is key!
Every day is a bit different and there is no consistency or ability to predict how I am going to feel. On harder days, I experience side effects of treatment. The rheumatoid arthritis symptoms are still pretty significant, and I am still dealing with a good bit
of pain. The adrenal fatigue, from the treatments, seems to have set in worse this past week. I have experienced fatigue in a new way. I also get headaches occasionally and waves of nausea at times.
On a good day, it takes me about an hour to get going (from the pain and stiffness) in the mornings, and then I will have 4-5 hours of energy with not much pain. I have started to hit a wall after lunch needing to lie down for a few hours to make it through the evenings. On a good day, I might get another wave of energy to get through the evenings and be able to do something active with the kids and Luke. I have been spending my energy and the good days trying to focus on the kids and Luke.
Thank you all for the generosity and love and support you are giving to our family. We will post all updates, including next weeks scan results on the new website.
We truly appreciate your support!
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