Happy Mother's Day and more

Happy Mother's Day to all the moms out there... but especially to mine. Her and my dad raised me well. They taught me as much as they possibly could. They were active, not passive, in their parenting. The best thing anyone could teach someone is how to do it yourself... you know the verse "Give a man a fish and you feed him for a day. Teach a man to fish and you feed him for a lifetime." They taught me to fish. Unfortunately my MG and other things had other plans and thus I have another huge thing to be thankful for- them taking me back into their home as an adult child who knows how to fish but can't do it alone all the time.

Now for an update-
My INR has stayed within range and my next check is the beginning of this week. I'm still waiting on my 24 hour holter monitor heart results and then my echocardiogram is this week also so I should know all of my heart tests and an idea of what's going on sometime next week.

I had my followup with my surgeon this past week... kind of pointless I think. I could have sent him a photo of my scars and it would have taken a lot less time and expense. So glad to be done with that place. I won't miss it one bit.

As for my MG, nothing really different. I was feeling much stronger after the plasmapheresis and a little after surgery. But as soon as the pulmonary embolism hit, bam, back to how I was. But it's to be expected not to see any improvement. As a reminder it will take months to years to see improvement IF the surgery did bring any on for me.

I also had an appointment with a hematologist at Rush. I can't say enough good things about that hospital! Awesome! They were so organized, efficient, nice, clean... the food at the cafe' we stopped at was awesome. Too bad the hospital isn't a lot closer. Anyways, she ran all the blood work to see if my blood clots could be related to a genetic problem. God, I hope all is normal/negative, because otherwise I have to be on blood thinners for life. Then in about 5.5 months she wants a repeat CT chest scan to see if my clots are gone. If so and if my genetic tests are normal I can stop the blood thinners. About 2 weeks after that then she will run blood work to see if my blood clots could be related to an autoimmune disease. That can't be tested while on the blood thinners because the results get altered by it. If everything is negative, please please please be negative, then I will be done with blood thinners and can carry on.

Lastly-
I think I figured out how people can now post comments to my blog. There was a problem with it before, but it should be fixed. Someone go ahead and try it out. Hopefully it works. If not, no big deal- I get everyones emails, messages and such they just aren't posted for everyone to see. And I know people are still reading since I'm almost at 5000 views!!! So exciting! I would love if everyone could share at least the "about MG" page to get awareness out there.

Don't forget I opened a "shop" to sell MG items for awareness. I will make a percentage off of what is sold and if I start selling I plan to determine a percentage of my percentage to donate to the MG foundation. Please visit my shop site at CafePress

Thanks as always!