On February 23rd, I was a guest on the Stanford MedX Rare Disease panel. It was my first google hangout, and it was fun. Other than having a technical issue that prevented me from having a cool name listing like the other panelists, I thought it went well. Because i was under 18, they had my mom participate in the background.
We discussed what it is like to have a rare disease and the challenges with explaining it to others. We talked about the importance of research and connecting with other patients online. It was great to hear other share their stories. There were other patients, a caregiver, a doctor, and a journalist on there as well, and it seemed like we had some common stories to share.
There are over 6,000 rare diseases, and together they affect about 30 million people in the US. When you put them all together, they are not that uncommon, but each individual disease has less than 200,000 people with it in the US. That is the definition of a rare disease.
CureJM.org has a lot of information about my rare disease, Juvenile Dermatomyositis. If you are interested, check it out. The more people learn about rare diseases, the more we can have faster diagnoses and better treatments. Cure JM also has a patient community that is great at helping families get information they need.
Another resource we discussed was butyoudontlooksick.com and the Spoon Theory. If you haven’t heard of it, it is a great explanation of what it is like to have a chronic disease that causes fatigue. Many people don’t understand what it is like to look well on the outside but to feel badly and suffer from fatigue.
Check out the video and let me know what you think!
A few weeks ago, just before I went into the hospital, my mom signed me up for a new pharmacy program. She was so excited when it came in, and I thought it was cool. The pharmacy coordinates all of the prescriptions and refills and mails them to me in bubble packs. So, all I have to do is punch out the back of the bubble at the right time to take my meds. It also has the date, time, and the each of my medications that are in the bubble labeled on the back. So it is also great for helping me remember if I already took the my daily medications.
Before this, my mom was always complaining about having to go to the pharmacy and how they never could get the meds to be filled at the same time. We were always rushing to get something filled right before I ran out. Also, my mom really started hating having to fill up each pillbox weekly. It also helped me remember if I had taken them, but over time the labels wore off and the containers didn’t have the days of the week. So, I got less concerned about which container I took the meds from and just took a morning or a night container. The bubble pack is great because it has the date like Tuesday, February 4 10 am. So far, i have taken all of my meds at the right day and time with this system when usually I missed at least one dose of something every week or two before.
The other great thing is that the price is actually CHEAPER than the pharmacy we used before (a chain pharmacy). We will save $262 a year by having something easier to use! Also, they have a pharmacist who reviews all of your meds together to see if they see any issues or if they have any suggestions. It had been a while since I started some of the medications and they reminded us of some things to look out for.
I will keep you posted on this and how much I like it after using it longer, but so far HealthStat Rx seems like a pretty great idea to make taking your medications easier. Its was definately constructed with that patient in mind!
Another annoying thing in the hospital is the beeping. Why does the IV pump need to beep loudly in my ear when the nurse is the only one who can fix it? Doesn’t it make more sense for it to beep next to the person who can do something about it? It is especially annoying when I have a headache (which is after each of my treatments). With all of the technology today, surely there is the ability to make it quiet in my room but loud by the nurse?
Also, the nurse call buttons are getting fancier, but it appears that the hospitals aren’t really ready to handle them. For example, the pain button on the remote. It doesn’t do anything different than the Nurse button. If I push the pain button, shouldn’t the person answering know I am asking for something for pain?
And seriously, why does it call a person sitting at a desk who then needs to find the nurse? Can it not page the nurse and then she could pass it to someone else if needed? It is not only annoying to have to tell my problems to the speaker, but I also never know who is listening near the desk on the other end. And, to top it off, they sometimes turn off the light before my nurse comes so I am left waiting when nobody is coming (this is pretty rare as they really do try to come quickly, but it is always a concern because you don’t know if it is working).
Thanks to everyone who has been so supportive after my first video. I will keep making videos about good and frustrating experiences in healthcare. Please comment if you have ideas for a post! Also, I am at home now. I recorded this video during my recent hospital stay for meningitis, but I am recovering at home now.
This is a video I made which includes information on what I have done since the last video and what I plan on doing. Thanks for all the support! You have encouraged me to keep going with this and make more videos.
(P.S. The first video was originally posted on my moms youtube channel so I have re-uploaded it to a new channel that only I will use. The link to my new channel is here.)
A thoughtful and creative nurse put this blanket over my IV pump when I said the light was bothering me.
After four nights in the hospital, I made this video expressing my frustration over the lack of sleep you get while admitted. I also talk about the importance of listening to the patients wants and needs. Have you had a similar experience that needs to be solved?
E-patient Dave wrote an article about my video on Forbes.com
It has gotten quite a bit of attention:)