Thursday, June 2, 2011

not our best day

here is the update

justin was in the hospital yesterday to receive iv steroids and pain medication. it was a long day but it was not a day without a glimpse of how much the Lord loves us. Our Pastor came to sit and visit and some really great friends came to love on us too.
Dr. F (his rheumatologist) called in more blood tests...he set him an appointment for today and we just received the results.
Saying that we are devastated by them would be an understatement.
In addition to Justin's 3 other diseases (RA, Lupus, and systemic sclerosis) he now has polymyositis.

Polymyositis is an uncommon connective tissue disease. It's a type of inflammatory myopathy, which is characterized by muscle inflammation and weakness. The most noticeable characteristic of polymyositis is weakness of the skeletal muscles, which control movement. Periods of remission in polymyositis, during which symptoms improve spontaneously, rarely occur. However, treatment can improve your muscle strength and function.

Dr. F said Justin's muscle enzymes are leaking into his blood.

He had blood in his urine test.
His CK levels (creatine kinase) are 3,000....normal people are 0 to 300.
His liver has not improved much...but it has a LITTLE!
He has major blood count abnormalities.
Having two or more autoimmune diseases is call "overlap syndrome" just a little fyi for your day.
He will now be on 120mg prednisone each day until further notice.
He will now begin methotrixate (used to treat leukemia). He will take this forever.
No more Paleo diet....(not like he was doing ANY good on that lol...he couldnt refrain from the pop tarts!)...he needs milk. He has lost lots of weight. 15 pounds in 2 weeks to be exact.
Plus there is now concern for the possibility of osteoporosis.
He will be on 4 other prescription medications now too. Plus all the supplements I have him on.
Major lifestyle changes include: no more exercise (which is so so sad for him), no more alcohol, no strenuous activity at all...and here is the BIG mission trip to mexico. we are heartbroken. Justin truly felt called by the Lord for this trip. Dr. F said maybe one day.
just simply heartbroken.
many people donated to this trip...right now we are not sure if we will get the money back. if we can help someone else go we will do that...if we do get it back then we will use that for future medical burdens. Lots coming up...
One being the fact that the doctor will most likely hospitalize him next week. Needs these medications in him ASAP.
Visiting UCLA is probably in our future.
Did I mention we are heartbroken?
We have had a HUGE outpouring of love from our friends. Visitors, cards, letters, flowers, phone calls, texts, emails and MOST importantly PRAYER. Wow the prayer warriors are ON THEIR GAME! Like for real. We feel it BIG TIME. It feels so good to be wrapped up in God's arms right now. So so so good.
I wish I could thank each person personally....but because God is so good....there are just too many of you for that.
Treatment starts Monday. We go back for more blood tests Tuesday and will see the rheumatologist for more results Wednesday.
If you pray for us at all....pray for good news at that appointment. We havent got any yet....but we are flat out hopeful!!!!!
Love to you all.
Prayers for broken hearts.

oh! and many of you have asked....justins job is being great. as always...they are ready to help in any way....they are praying...they are supportive....they are family. they have been on this LONG journey of our lives the past few years. Praising God for his perfect timing in this job for Justin.

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