It's been a few months since I have posted anything. Life has been kind of getting in the way. Lets see... What's new...
1. I started a class in June that is like the turning point of my career, the foundation for Nurse Practitioner. It doesn't feel like much of a foundation. It feels rushed, short sided and like we are completely on our own to learn everything we need to know to diagnose and treat someone. Stupid... Anyway, I am plugging through. Should be studying for an exam right about now...
2. I have this new found desire to take my husband and kids on our first ever family vacation. We have never been anywhere that wasn't related to staying with family. My husband and I want to take them to Disney. It kind of seems like a pipe dream currently because it is so very expensive to go. Disney doesn't cater to larger families. If you fit outside the mold of the perfect two parent two kid family then you pay twice as much... But I have started a savings account, so we'll see.
3. Kimber hurt her knee... Poor thing. She fell straight on it. Nothing's broken, but she has a very large hematoma in one of the bursa that will not go away. It shrinks and then it swells again...
I guess that's pretty much it for now. I am still using coupons, but not as much lately because this class is so demanding and using coupons effectively takes more time and planning than life will allow for now. I did get boxes of cereal for a dollar and pop tarts for $0.69! =) I was able to get body wash, toothpaste, BBQ sauce, mustard, and many other things for free! Loving the free!
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Hi - I have a child with mitochondrial disease - he is eight. He has a new syptom - very sore fingers, popping joints, other parts of his body are also popping/crunching. He is hypermobile. I came across your blog. Is there a site I can refer to with patients having both Mito and EDS?
ReplyDeleteTom has been on the Mito cocktail and is also having LED light therapy to try and help prevent him loosing his eye sight. Any advise you have would be great. Thanks Martine (tom's mum)
Hi! I am sorry that I just now found your comment. I have not been able to find anything for people suspected of having both. I have searched high and low. Even the physicians I have cannot agree on whether it is both or just mito disease causing the loose joint also. I know of one other friend online, on Facebook, that has both. She struggles more with the mito than the EDS.
ReplyDeleteI wish I could help you more. My goal after going through all of this is to use every thing I know and have been through to help others so that they do not go as long as I did without help. So far it has not worked out the way I wanted it to. These diseases are so elusive and doctors have so many different opinions. I have still yet to find a practitioner who can just give me tips on how to "live" with this. How to adapt and move on.
I do have a lot of hypermobility, as well as signs of mito disease and it affects my children differently. I have found that when I am mito weak, fatigued and muscle weakness from the mito, that my joints are much more loose. In fact that is one of the first signs that I have that let's me know that it is going to be a weak, hard day. Usually it's my hips first. They pop when I walk, which makes walking that much harder.
I would love to talk kore , and am more than willing to listen if you just need to talk. My email address is Jamaica4god@yahoo.com
I'm sorry I couldn't help more.
Sincerely, Trish