I know most days this blog is about Brooklyn but today's post is about Charlie. I know many of you that read this blog have been worried about him and praying for him so I wanted to update everyone.
Charlie was diagnosed last week with Behcet's Disease. I guess we are just a "rare disease" family. About 5 out of every 100,00 people have it! Ugh, aren't we lucky. It is an autoimmune disease that causes inflammation of the blood vessels basically - although it is much more complicated than that really.
One of Charlie's worst symptoms is the arthritis/joint pain - he has been off work for 4 weeks now. He hates being off work and is SO ready to be back but physically he is just not ready. But, we are glad to finally have a diagnosis and a treatment plan!! He has seen over a dozen doctors over the past year so having an answer is truly an answer to prayer. Over the past few days the symptoms seem to actually be getting worse instead of better, I am not sure if that is typical at the start of treatment or not but we will be checking with his Rhemuatologist first thing in the morning.
For those of you who like me have never heard of Behcet's I did find this description online:
Behçet disease is a complex, multisystemic disease that includes involvement of the mucocutaneous, ocular, cardiovascular, renal, gastrointestinal, pulmonary, urologic, and central nervous systems and the joints, blood vessels, and lungs. I know...does not sound like much fun does it?!?!
We are hanging in there......I am pretty exhausted with the pregnancy, Brooklyn, and Charlie so please keep us ALL in your prayers!
Sunday, May 31, 2009
The two "Rare" loves of my life!
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13 comments:
Oh my Kelly - we will keep all of you in our thoughts and prayers and hope for Charlie to start feeling better soon.
Hi there Kelly and Charlie,
I've had Behcet's for 30 years (I'm 53 now). If you'd like to see a full list of good Behcet's-related links (including the Discovery Health show about my 17-year search for a diagnosis), please go to:
http://www.bdshowonline.com
All the best!
Joanne Z.
http://www.behcetsdisease.com
Kel and charlie, glad your journey is finally uncovering some answers. Hugs from Alabama!
Praying for Charlie and the entire family. I hope the symptoms will get better soon and you get some rest.
So much on your plate.. We are thinking about you guys! Hugs to all of you and hoping that everyone feels better soon...
Kelly, We'll be praying for Charlie, for all of you. Hope Charlie can get some relief with treatment and you can get some rest.
I am sure you all are happy to have a diagnosis - to know how to help Charlie, but I am sure it has added a lot to your "plates".
We will certainly be in prayer for your family.
Hugs
Kell, Kevin and Owen
I just have to say "wow". but it seems like you guys take things in stride and just say "bring it on":) I'll add you to the pray list we have and continue praying for good health.
Sending lots of hugs,
Tina,Dave,Laura
Many prayers going up on behalf of you and your beautiful family. I pray you find the right doctors to assist Charlie with the best treatment. You are a strong woman, and inspiration to so many! And an enormous blessing to your family! Hugs from MI
OMG...I'm gonna say it...NOT FAIR...enough is enough. That said I know that you are an amazing family with a fantastic support group. If any family can get through all this it you guys. Hugs to all.
Beth
Mom to angel kelly and her twin sabrina
Wow, talk about having a lot going on. Thinking about you all...
So sorry to hear that Charlie is facing this. I will add this to my prayers for your family.
Hey Butler family !! I had no idea all this was going on !! Charlie, get well and Kelly, my goodness, you are blessed with a rare family indeed. Quite special you all are. I will keep you in my prayers and positive thoughts. God bless !!
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