Snowflakes and Spoons

I can not believe how time has flown by since we first found out we were expecting. At times it still feels like a foreign concept as we await the arrival of our little boy. For me, the 3rd trimester felt a bit like a 'hurry up and wait' game. At times, there seemed to be too many pressures, classes, appointments and nesting to attend to but all I could really do was be prepared-ish and wait. Here are some tips I picked up during this time: A squeeze until the end As baby takes up more and more room your lung capacity is decreased. Make sure to monitor your breathing and be assertive with your PHC when it is more than being 'pregnant and out of breath' and rather MG related. With this squeeze indigestion and acid reflux often increases. Thankfully most over the counter antacid liquids, like Gaviscon, are safe for MG mommies. Make sure to double check your brand. The baby shower  For me, this could only be described as 'A coming together of suppor...

When diagnosed with Myasthenia Gravis, your neurologist will start to search for the best treatment for you. One of the more drastic treatment approaches you may be faced with is a thymectomy.  I underwent my transsternal thymectomy in 2009, two years after being officially diagnosed. Here are some tips to better prepare you and your family for this operation. Please note this is from personal experience and should not be taken as medical advice. Make sure to listen to your doctors and disclose all information needed prior to this operation. Pre-operation Buy pj's that button in the front for when you come out of ICU.   Make sure you have some socks packed in for ICU as it can be chilly. Wash your hair. You won't be able to do this until stable and that will be with assistance. Neaten up below. They will be inserting a catheter and may have to shave the area to stick the tubes down. Try some deep breathing or meditation to help relax.    See your as...

February 28th is world Rare Disease Day! When I was diagnosed I didn't know MG was classified as a rare disease. Here are some answers I found to the questions I had about rare diseases from scholarly articles. What classifies as a rare disease? Simply put, very few people have been diagnosed with a specific type of disease i.e. Myasthenia Gravis.  More scientifically, 1) A disease must have a prevalence of <200,000 persons in the U.S.  2) The Orphan Drug Act also defines diseases as “rare” if they affect more than 200,000 persons in the U.S. if “…there is no reasonable expectation that the cost of developing and making available in the U.S. a drug for such disease or condition will be recovered from sales in the U.S. of such drug.” Therefore  the costs to making a cure/treatment of this disease would not be recuperated if they sold it in America. A disease like diabetes would therefore not be considered. How many rare diseases are there?  It is est...