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Tuesday, August 31, 2010

As if EB isn't enough.....

I have been putting off posting this for while; not sure why, probably lack of time and energy but a little over 2 weeks ago and the day before my 33rd birthday I was diagnosed with Lupus.  Lupus is an auto immune disease and is a chronic inflammatory disease that occurs when your body's immune system attacks your own tissues and organs. Inflammation caused by lupus can affect many different body systems, including your joints, skin, kidneys, blood cells, heart and lungs.  You can learn more on the Mayo Clinic web site.

Right now I am currently on a steroid (Prednisone) to help control symptoms and it seems to be helping.  All my blood work has show the inflammation levels in my body to be normal for now.  But there are (serious) long term side effects of the Prednisone.  There is other medication I can take to reduce symptoms and complications but those too have long term side effects.  So far I just have fatigue, joint pain in my arms and shoulder and sometime my hips and ankles.  I also have frequent chest pain and high resting heart rate.  I have trouble doing tasks that require fine motor skills- like buttoning buttons or putting clothes on Polly Pocket Dolls:) 

I am suppose to avoid the sun and any ultra violet light which is hard to do living in Florida but the cold weather is really bad for joint pain so i don't think moving back to Michigan is an option right now.

I am still working- though some days are hard to make it through my shift.  I have many doctors appointments and blood work so the medical bills are starting to add up.  But I need to work to keep my insurance.

Long term outlook is pretty good they tell me.  As long as the medication keeps inflammation under control I should live a some-what normal life.  I am at a higher risk for developing heart disease, blood clots and certain kinds of cancer- specifically lung cancer.   I am slowly starting to exercise more to help with joint pain and reduce cardiovascular involvement. 

I did learn of one other person with EB who also has lupus, but apparently there is no direct connection. 

So for now I just take it one day at a time. 

Anyways, just wanted to update you and I hope to do more frequent updates in the future.

Tuesday, August 3, 2010

A short update

I know its been awhile.  I haven't had much time nor felt like blogging much lately.  I am having a lot of health issues and are still waiting on yet MORE blood tests to come back to try and determine what is going on.  There are some pretty serious things on the list of possibilities but we are hoping its none of those.  I will hopefully have some more answers by the end of next week.

School starts in a little less than 3 weeks and the girls are really excited.  Sami will be in 3rd grade and Summer will be in Pre-K.  Summer only goes 1/2 days but it will take some getting use to only have 1 kid for part of the day!  Grace probably isn't going to know what to do with herself while Summer is at school!  Sami's birthday is also coming up and she is already in full party planning mode:) 

The weather has been really hot and I see today another tropical storm is heading our way this up coming weekend.  We do need to the rain, but not any severe weather!

till next time................