That time of the month is here again! Wow, I feel like I just participated in June’s Chronic Illness Linkup. This year is going by fast! Just to review, Sheryl Chan from ‘A Chronic Voice’ hosts these monthly linkup parties. She comes up with different topics each month to write about and we interpret them however we please. This month’s topics are justifying, starting, analyzing, concluding, and planning. The rules are down below for anyone interested in joining. Let’s get started!
- You can only put 1 link per website
- Comment on a minimum of 2 other blog posts in the linkup.
- The linkup starts at the first of each month and closes before midnight on the last day of each month. This is run in Singapore timing.
- Write about at least 3 topics.
- Share the main link to the linkup at least once during the month to spread the word.
- Not following the rules might get you blocked from future linkups.
I think justifying is a good topic to look at in our lives. Over the past month, I have been trying to “justify” banning discriminatory organ transplants. People with disabilities, most often those with untraditional neurodevelopment such as Autism and Down Syndrome, are being denied perfectly suitable organ transplants. Doctor’s are refusing them life saving transplants, because their life is deemed “less worthy” than someone who is “normal”. Ever since I wrote about little miss Evie and her family’s fight to pass a bill in Louisiana, I have been researching. I found out that there are 39 states left in the United States with no type of protection against this discrimination, including the state in which I live.
I am an ambassador for the Chronic Disease Coalition, which deals with advocating legally for patient rights. So, I have brought this issue up with the organization and we are currently working out ways for the other ambassadors to get this banned in your state. It has not been easy, especially as one who is homebound, to get something that large changed. The family I wrote a story about has been helping me as well, sending resources and even their final bill draft that was approved. Deciding to justify something in your life, whether big or small, is a big decision. However, this is a decision that I will continue to pursue. **If anyone has any ideas legal or otherwise for making helping myself and others pass these bills, please contact me!**
I have been starting to make sure that my health becomes before all other things. Life with chronic illness makes it easy to push through in order to get something done. As the summer months have begun, my health has declined (thanks POTS). Initially, this proved to be a problem, as I was on a posting schedule of three times a week. With my energy stores running dry, I saw myself having no time to even watch YouTube videos. All of my available energy from the moment I woke up to the moment I went to bed, was spent on keeping up with my schedule. I made the decision to start posting just once a week. My health and mental wellbeing are more important than a schedule. I’ve noticed that making the conscious choice to put my health first has changed a lot for me. I’m grateful for that.
This past month, I have been analyzing my declining health. POTS causes me to feel worse in the summer every year, but this year has been different. While speaking to good friends on social media, I noticed that many of them were struggling more than usual as well. Those friends also have similar health issues as I do. It made me think about the weather. We’ve had a non-existent spring this year. Spring is usually the time of gradual warming, allowing my heart to adjust at it’s own pace before the summer heat. I checked back in with those same friends and they had similar weather conditions, despite being located across the U.S and U.K. I figured out that the reason why my POTS is much worse this year, is because the weather is quite off. This doesn’t solve how my heart feels, but it does give a sense of security when you know why your symptoms are worse.
I have concluded that being open, honest, and completely yourself is so freeing. Since being on social media as a public entity, I realized that we all project an image. An image that we have control of skewing to suit our own needs. I was never allowed to join Facebook until I was around 16 years old. At this point, I was already sick and dealing with several mental health breakdowns. It didn’t occur to me that you could project an image of yourself that might not feature the whole story. So with being on social media now, it comes naturally to be honest. Not only does this help me, but it has helped out many people. I have had numerous comments addressing my honesty and how it has inspired other advocates to open up.
This is an exciting topic for me! We have been planning to go to a mini-resort to celebrate my birthday. My mom needs to get her military card updated and we do not have a base near us. With my health issues, it takes an overnight trip to safely get there and back. It just so happens that this is going on during my birthday month. My mom and I decided to make an actual trip out of it, since I haven’t really done anything for my birthday for 5 years. We are also going to a place that we went to with my brother in the past, so I’m excited to be greeted with good memories. Plus, it has several pools, but is more of an adult place. Which I enjoyed years ago and will enjoy again. (No screaming kids are always a plus for anxiety and sensory issues.) I can’t wait to read a good book by the pool.
Thank you so much for reading this post today! What do you think of my answers to this month’s prompts? Comment one thing you are planning! If you want to join this awesome linkup, just click the main link up above and enjoy. Please subscribe and I’ll see you next time, my Un-imaginables!
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