Chelsea is still alive. Let’s start there. How? I don’t know. Since I last wrote, Chelsea is still in the hospital and has been since January 13th.
Chelsea fell head first out of her hospital bed at one point while in a very Incoherent state. Some background information, the side rails of hospital beds have been lowered dramatically in hospitals in general. I don’t know if this is a state or federal level. From a legal standpoint the side rails are considered “restraining” to the patient. Which means, falling out of bed while moving about in an incoherent state becomes a much bigger risk. After Chelsea’s fall the room started being monitored with a machine to make sure she didn’t fall out again. Besides some big bumps on the head and what looked to be a shoulder out of place she was checked out and deemed okay. The device which monitored chelsea was later removed.
At some point, Chelsea went from being nearly completely incoherent to much more coherent. Chelsea still sips on water. There is still no food intake, or stomach tube feedings. It’s been over 5 weeks. She’s lost over 30 pounds. Although, Chelsea gets some meds via stomach tube and I personally don’t get that when you consider she isn’t absorbing them well and it just adds to pain.
They are still determining a placement for Chelsea. They found what seems like a wonderful place with round the clock RN services which is what Chelsea would need otherwise certain medications would not be able to be given. For instance, PCAs can not give medications chelsea would need to get out of an attack hence needing an RN which most facilities do NOT have on staff 24/7. Some facilities only have RNs on staff for a handful of hours over a whole 7 day period.
Again a problem lies in the fact that Chelsea needs a primary care doctor and a possible secondary pain management doctor. Because of Chelsea’s complex case many doctors won’t work with the case.
I’d like to add some perspective as well as I think it’s only fair to see all sides. The few medications Chelsea has to pull her out of attacks depress cardiac and respiratory systems of an average person. Being that Chelsea has Stiff Person Syndrome means she’s GABA deficient. When you are GABA deficient there’s certain medications that if you take require higher doses to be effective. In fact, part of being diagnosed clinically with Stiff Person Syndrome is seeing how well you tolerate said higher doses of medication. Without being GABA deficient your ass will be knocked out. Those are some of the same medications that depress the average person’s cardiac and respiratory systems. Therefore, if you look at JUST THAT ONE syndrome you can see why it would be hard for a provider to not only provide relief for that disorder but a myriad of other issues that need relief. If you look at cases with doctors prescribing medications that later not just correlate but cause death I can see the hesitancy for a doctor to get involved. The medications themselves do NOT cause her cardiac and respiratory depression it’s Chelsea’s attacks that cause that depression of cardiac and respiratory systems. In fact, one of the most prevalent ways to die from Stiff Person Syndrome is Apnea. No, sleep apnea is not the only way apnea can happen. In a report at death one OR the other could be seen as the reason for death. I don’t know about all the reasons Chelsea is being denied help and I’ll stay out of that for now as I see the list being long. If I look at just that one very large issue, the medications to get chelsea out of attacks, you can see why a doctor is frightened or unwilling to take that chance.
Sadly that leaves chelsea and many other humans with complex cases without care. With blanketed rules, laws, and regulations many people are unable to be properly cared for. If anything is proven though Chelsea’s life and eventual death it is that very unnerving fact.
A side issue that seems reasonable to address: social media. It’s been brought to my attention, that people whom follow Chelsea on social outlets don’t know about pre-saved videos and so it confuses some as to why Chelsea looks like she is elsewhere or looks different physically. Many content creators will make a video, save it, and post it later. It’s quite common. It’s similar to a person taking pictures and posting them to a social account at a later date. Another thing to consider is while she’s been in the hospital Chelsea isn’t always coherent for several factors and number one being her body is shutting down because she can’t eat. As for why Chelsea posts and what she posts that is her choice. She’s choosing how she wants to be heard and what she wants to be remembered for.
*** Chelsea states, “I’m going to advocate until my final breathe, because people like me [rare and disabled] deserve a basic standard of care. We shouldn’t have to fly across the country to get help. There should be studies, and evidence based research for every doctor to have access to. Therefore more doctors being aware and able to help complex cases. The best thing to come out of Covid is things becoming more accessible. People could work from home; people could see a doctor virtually. People didn’t need to choose between going to work [trying to make a living] and health. The disabled community finally started being heard just a little bit. Society saw a glimpse on how to help. TikTok is where we [disable community] can use our voice. If you want to see it for yourself and hear my fellow disabled friends type in: #DisabledTikTok or #DisabilityTikTok #PainTok #ChronicIllness #ChronicPain #MCAS #EDS etc.. Hashtag [#] anything you want to know more about. Easier still, go to my TikTok or other social media accounts, tap any of the hashtags [#] and it will take you to other people’s similar experiences. ***
I’ll leave this subject with a general rule of thumb in regards to: social media, web, news outlets etc.. Take what you watch and read with a grain of salt. If you aren’t personally immersed and impacted by the situation it only makes logical sense you won’t have the pieces to understand it’s complexity.
Spread the love folks because the world has enough discord and negativity
Lastly, and MOST IMPORTANT thank you for your ongoing prayers, kindness, and love. Chelsea appreciates your support tremendously. Her families appreciates your support.
