I am not a person who lives a structured life well. I work at odd hours ( for way too many each day), take breaks at odd hours and used this to balance having a career and being a mom. I ave been blessed to have jobs that are extremely flexible and have carved a way of life that supports this.
Now my Biology has decided I need to work to a different drummer. Trying to balance this, stick to the routine that my body wants and not go crazy is my newest challenge.
I have been taking 2-3 pills per day for my Hashimoto’s for some time. It sounds awful, but I have a great, balanced routine going. I do 5mcg Cytomel first thing ( 5-6am), get my day started, stop eating at 9am, take Synthroid at 11am, eat any time after noon again. If the day is long or very active, sometime in the afternoon I take another Cytomel. Most days I do well without it.
Now add in this latest challenge, and taking Mestinon around the clock. For about a week, the Dr. has had me on 60mg every 4 hours around the clock… and it needs to be taken with food. I have been managing OK by setting multiple alarms on my cell pone and taking mestinon at 12/4/8/12/4/8. In the last day or so, I ave started having some sideffects from the Mestinon- muscle twitching, cramps in foot/calves and forearms. Nothing killer, but enough to want to play with med schedules and see if I can back off without losing functionality from where I am. If this is MG, incidents can come and go with varying intensity. I would prefer to be at minimum drug needed and have ability to increase if needed. It is very true that I am nowhere close to “normal” functioning for me, but I am at the max dose that the neuro doc is comfortable with. Further advancements are going to have to come either from time, or some other med/treatment combinations to be decided when the diagnosis is finalized and we move forward. Luckily, I got permission from him to mess with my med schedules, as long as I do not do anything closer than every 4 hours. If I can get the same level of functionality from fewer pills for now, I will mark this as a success.
Since there are so many pills involved, I would prefer to have something regular and easy to remember– but I would also like to have something that gives me the flexibility of a slot where I can “add in” on really active days– like that reserve second cytomel. I am really grateful for Evernote– where I have started a notebook just to track symptoms and will be able to look at patterns and find the best timing to stay strong. Sometimes I wonder why House does not use an electronic whiteboard, where he could pull up patient charts, data graphs side by side with hand written notes he makes. Maybe it is time to have House go hi-tech. Should we write in a suggestion to the show for a diagnostic differential dashboard??