Jami's "need to vent" post ---

Okay -- so I don't normally do this but decided that since I need some venting time that my blog would be the best place to do it!  I almost didn't do it b/c I certainly don't want my "venting" to come across as me not bringing glory to God (since I try to live my life to bring HIM glory in all that I do), but even as a Christian believer, I need just a moment to vent :)

No I am not venting about our government, our schools, everything that has happen with Bin Laden this week.........just need a moment to complain about this rotten disease that I have!

I know - some of you don't even know I have a "disease" right?  It's hard to tell from looking at me!  But...I do!  And...it's a chronic, long term, nasty painful autoimmune disease that I would wish upon anyone!  No it's not cancer, it's not CF, or other even more horrible things, but to me and my family it has definitely become something that rears its ugly head and keeps us from being the "normal" we would like to be!

Here's a link for those of you who have no idea what this disease (PsA) is --
Learn More About Psoriatic Arthritis Here!

Okay -- so here's the deal:

About 6 months after Kendylmae was born, I started just being so tired and having achy joints.  I just thought it was part of being a mom of 3, trying to homeschool, and run my own business.  It got worse and then.....3 fingers on my right hand developed this nasty skin issue - beyond dry skin.  Cracked, swollen, painful!  We spent 18 months trying to get a diagnosis!  We were sent EVERYWHERE including MUSC and no one would diagnose my disease.  Even though a dear friend of mine (P) and her mom (who work for my current rheumatologist) were certain that I had psoriatic arthritis.  The dr's at MUSC said "this is something you are causing yourself!" REALLY?  The dermatologists didn't want to diagnose it as psoriasis on my fingers b/c it really wasn't anywhere else on my body.  It was a nightmare!  The pain continue to get worse (could hardly move in the mornings - literally felt like I was 90 and not late 30's), couldn't keep up with the kids, etc.  Finally, by the grace of God and thru a church friend, I was connected with a Dr. in another state that consultanted with on the phone.  He pulled some strings and got me into an amazing Dr. at USC school of medicine that was no longer accepting patients but took me on.  For the first time EVER, I sat in his office and someone heard what I said and after an hour and half with me - looked right at me and said "you have PsA!" Let's start you on treatment.  I cried and cried  - I finally had the answer and someone was willing to help me!  I thought YES - I am home free!  Well........that was 2 years ago this July!  Yes...I have meds and am being treated but the battle is far from over.  Little did I know how much this disease would change me and my family!

Now .....before I go any farther let me say this --- I have SLOWLY and just recently finally come to terms with the fact that this is a life long disease that I will be dealing with until Jesus calls me home!  I have yet to get to the point where I am joyful about it though!  I am spending LOTS of time in prayer and reading amazing books (Joni Erikson Tada) and the BIBLE that are all helping me get to this point.  I do know that God has allowed this in my life to bring HIM glory and I know that someone HE will use this disease and what my family is experiencing for HIS GOOD!  Now -- that being said -- I do not always (actually hardly ever) exemplify this in my life (especially to my sweet family)!  I do a lot of complaining and even more crying that I can't be the mom and the wife that my family need!

So...nearly 2 years after diagnosis -- I still battle this disease on a daily basis.  Typically, I NEVER have a day where I am not in some type of pain!  My meds help but not as much as I feel they should!  I inject Humira every 2 weeks and take some nasty little pills known as Methotrexate every week!  I am also suppose to take an NSAID 2 times every day - -but honestly (hopefully this doesn't get back to my doc) - -I AM SICK OF DRUGS! AND....I HAVE DONE MY RESEARCH AND KNOW THAT THEY MAY BE HURTING ME IN THE LONG RUN!  I do take my NSAID at night but don't always take it twice a day!  I feel my LIVER SCREAMING out at me daily since I am torturing it so much!

I have been blessed by two amazing ladies who have led me down a road of trying more natural approaches.  I have learned to eat more healthy (although admit that on the days when I feel rotten I don't eat nearly as healthy as I should), have added some GREAT whole food supplements to my daily routine (that I do believe help), and have fallen in love with Essential Oils to help with pain!  However -- let me be honest again here and say -- I HATE THAT TRYING TO BE HEALTHY AND TREAT THINGS NATURALLY COSTS SO MUCH MONEY!  It is so darn expensive!  I wish our nation and our insurance companies would recognize that healthy living and natural remedies can work just as well as modern medicine and help subsidize these costs!

So....as I am typing and realize it is turning into more rambling than  anything else :)  what I do best :)

I guess this post is more about awareness!  I know I have many friends who will read this that have RA, PsA, Lupus, fibro, and other diseases like this!  They know where I am coming from!  Those of you that are blessed to get up each morning pain free, not swollen, not feeling like you are 90 instead of 40 -- cherish it!

For me....I am praying that God will give me a more understanding heart, a desire to praise Him thru all of this, the ability to be the mom, wife, friend that I need to be despite the limitations this disease has put on me, and that others will see Him thru me despite my rotten attitude toward having this nasty disease!

I am also praying that somehow we will find a combination of meds and natural approaches that will work to keep my pain away!  I would LOVE to have one complete day when I can wake up without pain!  I know that I may not experience that day this side of heaven, but I am hopeful!

More than anything I want my attitude to reflect Jesus which has been so hard for me in all of this.  It is so easy to become mean and hurtful to those you love when you suffer in chronic pain that seems invisible to the outside world.  It's easier for me to put on a smile for those outside of my house b/c I don't want them to know what I am going thru.  But...poor Mike  -- he doesn't get that smile very often!  And...he has lost the wife he married b/c I am not the fun, happy, easy going person I once was.  Not because I don't want to be that way but b/c it's hard to be that way when your body hurts ALL THE TIME and you feel like you are gaining weight by the minute b/c your body hurts to walk, and run, and do all the fun things it use to do.  And...my kids  - they get to see more crying and tears than I care to admit!  I just want to be the fun mom I use to be.  My only desire (since before I can even remember) was to grow up to be a mommy who homeschooled her children and taught them Godly things!  I wanted to spend my every minute with my kids b/c God had blessed me by allowing me to be their mommy here on earth.  I still want that, but feel like I am missing out on so much and that I am not the fun mom they deserve.  I know God knows my heart!  And...despite the painful last 4 years, God has allowed me continue to live my dream!  I am trying my hardest to cherish every moment He allows me to have  - teaching and loving them!

Okay -- so now that I have rambled and rambled and rambled - I do feel better :)  It has been a week and I just needed to type!!  This is my safe place to do that I guess!  It was one of those weeks where I thought it would be a good week b/c I had just injected and it turned out to be a painful week anyway with a nasty migraine added in and then a night being up throwing up!  Every day I said to Mike (on the phone b/c he and Christian are living in another city right now - whole other blog post :)) "Just one day?  Can God please give me one day where I don't have something wrong with my body?!"

So...I will end my post with a couple of scriptures that I have held near and dear to my heart lately:

1 Peter 4:12 --- Dear Friends, do not be surprised at the painful trial you are suffering, as though something strange were happening to you.  But rejoice that you participate in the suffereings of Christ, so that you may be overjoyed when his glory is revealed.

2 Corinthians 12:8-9 --- Three (Paul only asked 3 times, I am certain I have asked 1,000+) different times I begged the Lord to take it away. Each time He said, "My grace is all you need.  My power works best in weakness."  So...now I am glad to boast about my weaknesses, so that the power of Christ can work through me!  **I pray this verse constantly b/c this is where I want my heart to be!

and...my life verse ---- Jeremiah 29:11 -- For I know the plans I have for YOU, declares the Lord, plans to prosper you and not to harm you, plans to give you a hope and a future!

Suffering for my Savior and praying for a heart like His thru it all -
Jami