Monday, August 9, 2010

On the right road....I hope!

I can hardly believe it is the 9th of August already. It's almost a month since my last blog post and many things have changed. Before I get to that, however, I want to tell you all how much I have appreciated your comments and personal emails over the past month. Your words of comfort and support were overwhelming to me at a time when I was in so much discomfort and despair. Many have shared your own health histories....some have been very similar to mine and others, much more serious. Reading those notes assured me that I was not losing my mind and that my pain was real....I just needed to keep asking questions and seeking help to find answers. My family has been loving and supportive, of course, and I never would have been able to get through those days of pain and fear without David, who was a constant reminder of the steadfastness of God's love and mercy. But it is you, dear blogging friends, who reached out and offered words of kindness to me, someone you've never met personally. I was so humbled by those gestures. Random Acts of Kindness took on many forms in cards, gifts and notes. Most importantly, thank you for praying for me and keeping me in your thoughts. Words could never adequately express my appreciation for all you have done.
So what has changed? I was finally able to schedule an appointment to see a Rheumatologist in July. She went over all of my lab results and determined, by process of elimination, that what I have is a condition called Polymyalgia Rheumatica. I am not a textbook case for this illness. It is inflammation of the soft tissues surrounding the joints and normally starts in the shoulders and hips. My pain was primarily in my chest, shoulders and neck. The key to the diagnosis was found in my blood work. (Those who are familiar with such sed rate was 95 and my CRP was 49.5) The treatment for Polymyalgia is steroids (Prednisone). Three weeks ago I started my steroid regimen. Within just a few days, the pain in my chest started to subside and within a week I was able to sleep lying down for the first time in weeks and weeks. I was so grateful for the relief that the medication brought but, if you've ever been on Prednisone for any length of time, you know that there are lots of side-effects. Initially, I couldn't sleep for more than 4 or 5 hours. Over the course of a week or so, that sleep deprivation makes functioning on a productive level nearly impossible. I am starting to adjust to the drugs  and for the first time can say that I feel more like myself than I have since May. It is not clear how long I will be on the steroids.....probably 9 months-2 years, it will depend on how my blood work looks in the next months.
Now that I have been feeling better, my desire to work in my studio is returning. I have been puttering with some new projects and finally finshed up the Vintage Vacation Swap that was hosted by Jenny Heid. I was late in sending out my package to my swap partner, Karen, but she has been very understanding of my situation. We were to send along some vintage or thrifted vacation themed items, something handmade and some interesting summer food treats.  Karen and her family live in Delaware and often take day trips to Rehoboth Beach (my favorite beach location) so I made a little accordian travel album to put favorite pictures in....

I  mapped out some additional points of interest and included small maps with the routes to the Inner Harbor in Baltimore, Washington, D.C., and Ocean City, Maryland, in addition to Rehoboth Beach..

a travel Bingo game for the journey...

and some old time candies for snacking...

Karen also likes to sew and do paper crafting so I wrapped up some "Staycation" goodies....

Cupcakes are a favorite  for Karen so I included some supplies with that theme and also a little journal decorated with an image designed by our swap hostess, Jenny.

Hopefully, I am on the right road and it is back to life as usual for me.
 Now, I have to catch up on your blogs and see what you've been up to over the summer.
Here's to happier times!


NanE said...

So glad to hear you have a diagnosis and a treatment plan. Here's hoping and praying for continued healing. The little album you made is darling. Hugs, Nan

My Vintage Studio said...

Hi Joyce. So glad to hear you are feeling better!

Love the travel album.

Wishing you a wonderful week.

Hugs, Sharon

Nan said...

Oh I'm so thrilled to hear you are now moving in the right direction with you problem. I'm sure things will slowly improve. Take Care. Nan

Sandy said...

I am thrilled to see you feeling well enough to say haello! I read this twice and I am sooo supportive of your plight! Prednisone is not fun, but being able to know it is not for always is a blessing.....take care and rest, we have the holidays coming kiddo!!!!! :):)

Rebecca said...

Hi Joyce...I'm so glad to hear you are on the road to recovery. I have an auto immune disorder (thankfully in remission for many years now) and once took Prednizone. Aside from getting a moon-face for a bit I weathered the meds fairly well. I believe it helped kick-start my system and get me back to wellness again. I pray the same will be true for you.

Love your swap-pretties!

Love to you~


marie said...

Hi Joyce,
I'm SO HAPPY to be reading a post from you! I have been praying and hoping that "no news" recently didn't mean bad news. What a blessing to know you have some answers and some relief!

The hardest part about feeling better after feeling so bad is remembering not to over-do! I'm going to be praying that you take it easy, enjoy a bit of creating time, and enjoy a little (laying-down) rest in the middle of the day!

Love you a bunch and think of you often! And really ~ I was SO HAPPY to hear from you today!!

Sandy Michelle said...

I'm glad the Drs were able to figure out what you had and that there is medication for it that can help you get your life back!


Katsui Jewelry said...

I am so happy to see you here today. I just want to say, Thank You, God! I know your condition well as they have wondered if that is what I have...however, it did not subside like usual. Life has gone on and it is good!

I am so, so, so happy you are better and adjusting to the prednisone and pray it all continues to go positively!

Bigs hugs,

Meri Wiley said...

Hi Joyce,

So glad to hear you've got a "plan." Hey we can be CRP level is at 52.3, but it waivers depending on day. I've had it checked about 6 times in the past 4 months, and now it's just part of my monthly blood tests. Guess what's even more fun than that??? having hot flashes on top of it all....LOL I have to laugh, it beats crying. Seriously girlfriend, I've got you in my prayers and best of health thoughts. Just remember if you ever need to or call me.

Love ya'

My name is PJ. said...

I'm so thankful the steroids are easing your pain and giving you back a piece of your life! God is GREAAAAAAAAAT!

LOVE the swap book and goodies you made for Karen. You really are one of the most creative souls I've encountered in blogland!

Twyla and Lindsey said...

Joyce, I am so glad that you are feeling better and you now know what the problem is. How wonderful to feel like creating again! I hope you have a wonderful day! Twyla

M.L. @ The House of Whimsy said...

Hi sweet friend,
I'm so happy you have finally found some answers and well-deserved relief. I hope each new day takes you further down the road to recovery. I know that working in your studio will be just the ticket. : )
I love what you have created for your Swap partner. Just beautiful!!!
Take good care,
Mary Lou

Sherry from Alabama said...

You have a lovely blog. I've enjoyed visiting this morning.

Sherry @ A Happy Valentine

heidi said...

Hi Joyce,
I'm so very thankful to hear your pain has been diagnosed and now is under a treatment. I will continue to pray that treatment will continue to be effective and possibly reducing the symptons completely. God is like that, you know! I often think of you will running and have lifted you up in prayer continually. I delighted to see you back doing your hobby: Scrapping for Joy. The Joy of the Lord is Your strength, we can see that through and through. I'm thankful that God has placed you in loving arms, (David), and calm and protect you through your husband and helpmate.
~hugs, Heidi

Anonymous said...

I'm not really anonymous, but thought I'd try to post using that method. I'm glad to see that you are up to posting and feeling a bit better. I should have your package in the mail in a couple days. It has ben a busy time with dr. appointments and birthday celebrations. Take care, mary k

Lori said...

I'm glad to hear that you are on the mend and that you finally have a diagnosis! I'm wishing you better health each day and can't wait to finally see more of your wonderful creations! May God Bless You!

Sally Annie Magundy said...

Oh Joyce! I was so happy to see a new post today! I'm so glad to hear that you have found an answer and a name to your ailment and have begun to finally feel better. That's so wonderful. Thinking positively and sending out good thoughts that you will only need the shorter regimen of the Prednisone.

You are amazing, what a terrific package of goodies you got off to your swap partner. Your vacation album is wonderful and will be cherished for years to come.

Take good care of yourself and wishing you lots of creative fun!


Creative Breathing said...

Joyce, This is the post I have been waiting for! To see you back to your incredible paper art just fills me with joy. There isn't anyone who takes such special care with each detail. The paper choices are just lovely. All the extras are so you! So fun! You have been sorely missed, and I am glad you are back with us! Elizabeth

Celestial Charms said...

So glad you finally have some answers. Thank God. Your creations are beautiful. Hope each day brings you more and more comfort.

Chele said...

So happy to hear that you are feeling better!!! Miss you!

Anonymous said...

This is good news, Joyce. Getting relief from pain so you can begin to live normally again...and knowing what is wrong helps so much. The not knowing can make it so much worse.

woodandfabric said...

Hello Joyce,
I am So happy of the good news!
The travel book you made for the swap is gorgeous! I love the idea of including little maps!
Take good care!
M *Ü*

LaurieStar said...

I was so happy to see a post here from you! I have been so worried about you and glad to hear that you have pinned it down and are feeling a bit better. It must be very hard to have your life just change like that all of a sudden. Thanks for filling us in and don't overdo it on the projects! Take some time for you! XOXOO - love ya.

Katsui Jewelry said...

Thinking of you and keeping you in my prayers, lovely Joyce!

Mimi Sue said...

It is always such a relief to get a diagnosis so they can give you something that will help! Glad you're at that point. It makes us all stop for a moment and not take our good health for granted. My prayers are with you that you might make a speedy recovery. Mimi


Hi Joyce,
That is such great news!! SO glad that you are feeling better, that you know what's going on with your health and that you feel like making goodies again! You are a wonderful swap partner!
deb :)

South City Hues said...

Oh goodness. I need to drop by your blog more often. I have you in my prayers.

I want to share with you these words that a wonderful and wise woman once wrote to me about 2 years ago when I truly needed to hear them. "I've come to believe that the thing I should pray for is strength. Strength to face whatever life throws our way. I feel that God never promised that life wouldn't be hard, but he does promise that He will never leave us."


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