Sunday, April 7, 2013

Fibromyalgia: Two Years Since Diagnosis

It's been just over two years since I was told I have fibromyalgia. To say that it's been quite the journey is an understatement. I'm not where I want to be yet, but have grown and learned a lot in these two years. The first 6 months to a year were probably the most difficult, trying to come to terms with what this meant, and envisioning what the rest of my life might look like if this doesn't get better. How long will it take for me to find a balance where this doesn't impact me and my daily life? I tried new medication after new medication, nothing working the way I hoped it would. It got depressing as I tried more and more treatments and still had the same pain, fatigue, and headaches as before. Some things would help for a while, but the relief didn't last long, and I still had many other symptoms to work on. 

I can say looking back, there have been many dark days/weeks since March 2011. The physical pain obviously hurts, but with that news came emotional and spiritual pain as well. Initially, I was frustrated with God, thinking "Why me?", "Why this?", that phase lasted quite some time, just not understanding why this was going to be part of my journey. I also had hope that something hadn't been seen, that it was actually something else, easier to treat and they'd find it soon. Two years later, my bloodwork still looks great, scans, Xrays, etc. all look fine (which is a good thing!), just is confusing and hard when I deal with something real everyday, that the doctors can't "see". It's an invisible illness, yet very visible for those of us living with it. 
I'm thankful I've been able to see some experts here that work very closely with fibro patients and they've helped in many ways. The hard thing, is there are still things nothing seems to fix. The physical therapy I'm doing now is good, but my headaches are still consistent. I may need to see more specialists at some point to see what we can do about the headaches. Some days they're dull and I can work through them, others, it's strong and gripping and takes me out until it lets up. The fatigue is still something nothing has helped with either. I'm just so tired pretty much all of the time, and it's rare for me to feel rested (it's an amazing feeling when I get it though!). I won't go on because I write about my symptoms often enough and I want this post to be a bit more of the bigger picture. 
Pinned Image
I know there is some sort of a purpose for me being on this journey. Maybe it's to help others down the road with it, maybe it's to bring us closer to God, needing to rely on Him for strength every day, I'm not sure what it is yet. After watching Passion of the Christ again last weekend, I was reminded of all of the pain and suffering Christ endured and I know he "gets" it and knows my pain - He endured much worse. I come to Him daily to help carry my load. I praise Him on good days and cry out to Him on bad ones. Nick prays for me every morning before he leaves for work (while I'm still in bed, in a sleepy haze), asking God to help my pain and which ever other symptoms I'm dealing with that day. Honestly as hard as this life is for both Nick and I, I think I'd say it has brought us closer. We come together in prayer about it often, and Nick is thankfully so supportive to take on extra (and sometimes all) chores so I don't push myself. I'm so thankful to have him with me in this. Thankful beyond words. As much as I've grieved over the past two years about this "new" life, it has impacted Nick in those same ways. 
There are days I look back on our photos from our wedding day and I realize we had no idea what the next few years would hold, and how tough they would be. I had some symptoms before we were married (headaches, neck aches, and a few others), but we've endured some dark days with our new reality since then. I'm encouraged by who we were then, all the strength we have, and hope for the future. 

 I have the greatest family and friends (all of you!) that help encourage me tremendously too. I know there are still tough days ahead, but I know deep down that I have the Lord, my friends and family, and I can make it through what life brings. This life on earth isn't an easy life, and God sees the bigger picture and is with me (us) through it all. 

But Blessed is the one who trusts in the Lord, whose confidence is in Him. They will be like a tree planted by the water that sends out its roots by the stream. It does not fear when heat comes; its leaves are always green. It has no worries in a year of drought and never fails to bear fruit. - Jeremiah 17: 7-8

Today's Pinspiration: 


Denise from Texas said...

Okay, here goes the new, slightly fanatical sounding me who has a much stronger relationship with our Lord, Jesus Christ. Something that I have learned recently is that our afflictions are from this world and from our enemy. But we have a greater power in us through Jesus Christ than our enemy has in this world, and he knows it. He has lied to you if you think this is something you are stuck with forever. I may have consoled you in the past, but I will not come into agreement with you now. I do not want to seal this for you. Therefore, I will tell you that through Jesus, through God, you will be healed. Do you believe it? Have you ever really, really believed it? I don't know how it works, I don't know how to pray for it, I just know that if we humble ourselves and go before the Lord, He hears our cries. He will come down out of his tower and heal us (that's somewhere in Psalms). I encourage you, exercise that faith. I mean that faith that lives way down deep inside of you that really, truly knows the power of our God, His love, His mercy, His grace for those who truly believe and call on Him. Sometimes what we think is impossible, isn't. It's just that Satan keeps whispering his little lies into our minds until we are totally and completely envolved in his story. Don't give in. This is not the life that you are meant to live. Your testimony will not be how you grew closer to God through your pain. No. Your testimony will be how God healed you. That is a true testimony. It may not be today, and it may not be 6 months from now, but I truly, truly believe that we need to get over ourselves and ask God for the impossible, and watch Him part the sea! There is nothing that He cannot do. I love you and I will pray this for you. Please pray it for yourself, too.

Laurie said...

I found your blog while looking for a recipe on Pinterest, Marissa, and was drawn to read about your journey with fibromyalgia. I was diagnosed about 15 years ago, and I suspected that something else was also going on, because my symptoms began to get worse and expand to other problems, one being face pain. I finally went to a neurologist who ordered an MRI and it was discovered that I have chiari malformation and syringomyelia. At first, he didn't see the chiari malformation, but when he took a 2nd look, he saw it. It wasn't very pronounced, but that doesn't matter. It causes terrible headaches no matter how bad the CM is. If you want, go to my blog and read about this: (Perhaps you have already looked into this, and if so, I apologize for bringing it up.) I had surgery nearly 4 years ago that gave me some relief. It has taken a long time, but I do not have the headaches as bad, although if I overdo or do not take pain medication on time, the headaches and body pain get worse. Even though I still believe I have fibro and the symptoms get worse, I do not have them all of the time. It is hard for me to tell the difference at times between the fibro and the CM&SM, but I am finally able to manage the pain so much better. Marissa, I could have written this post a few years ago, and I totally understand the pain, grief and need for answers. I echo your words, that this journey has drawn me closer to the Lord, and I am so thankful that Jesus knows and understands my pain. He did not promise to take away the pain and suffering of this world but to always be with us. I, too, find strength in His Word daily. I will follow your blog and I will be praying for you as you go on this journey with Him.

Blessings to you and your husband,

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