Sunday, November 18, 2012


When dealing with a chronic illness, hope is extremely important. I frequent several online forums and support groups and people are constantly encouraging each other to not give up hope. As Larry, a fellow pelvic pain sufferer said, "Hope -- just never gave up hope. I believe hope is just about everything."

Some days it seems my overall pain level can vary based on my outlook and whether or not I feel hopeful (and of course vice versa - if my pain levels are low I obviously feel more hopeful). When I'm going to see a new doctor or even have a massage appointment that I know is not going to "fix" me , I often am encouraged again to have hope because I am doing something and not just laying around in my pajamas another day trying to make the best of it all.

Almost 2 weeks ago I had my infusions. I'll spare you all the details, but let's just say it was an interesting experience. Unfortuantely my doctor had only tried this infusion on one other patient and there was no real protocol in place. The amount of medications they gave me were no where near the amount needed to have any therapeutic effect according to all the research I've read, and the whole experience was a little traumatic. My doctor said not to come back a third day if I didn't have any relief -which I didn't - and I knew there was no point as one more day of such a low dosage wasn't going to have any more effect. I actually left after the 2nd day with more pain, I assume due to the trauma of the whole experience. I am still experiencing more burning in my legs and feet and unfortuantely nothing really gives me any relief from this horrible symptom. I wasn't expecting these infusions to cure me, but I was hopeful to get at least a little relief . I sure didn't expect to have an increase in pain!

To be honest, I've been pretty despondent and discouraged. WHAT is God doing?! WHY can't I find even a little relief? I'm so, so tired of trying to figure out what is wrong with me and how to treat my crazy pain that no one seems to understand (other than all my pelvic pain buddies I've met online - love you guys!). Throw in all my current GI issues and it almost feels like more than I can bear.

I have just tried so many treatments over the years. I've researched, I've prayed, I've tried to seek God's wisdom and I only seem to get worse. I honestly do not know of other treatments I can try apart from flying and spending lots of money to see a specialist who deals with CRPS (chronic regional pain syndrome - which some of my symptoms seem to match) and try more infusions like this or having arthrosopic hip surgery for my labral tear which may or may not fix any of my pain and could make the pain worse if I am truly dealing with CRPS. So is this it? I'm 30 years old. Should I just accept it and pray I can somehow manage the pain for the rest of my life?

I know God is in control and that my hope should be in Him, but it is very hard to feel hopeful when I cannot sit for more than 20-30 minutes (in pain) on a good day and when I can't fall asleep because it feels like my legs are on fire and I can't even stand for them to touch the pillow that is inbetween my legs - the one position in which I used to find some relief. Is this what I have to look forward to - a continual progression of agony?

Then I was convicted the other day - I really have just as much hope when I am lying in bed with worsening pain, uncomfortable burping after each drink of water, and no prospect of future treatment as I do when I am preparring to try a new treatment to rid me of my physical ailments or visting with a doctor or having a less painful day because my hope is in Christ.

I can relate to some of the anguish the writer of Lamentations expresses in chapter 3:

surely against me he [God] turns his hand again and again the whole day long. He has made my flesh and my skin waste away; he has broken my bones; he has besieged and enveloped me with bitterness and tribulation; (v. 3-5)

He has walled me about so that I cannot escape; he has made my chains heavy; though I call and cry for help, he shuts out my prayer;  (v. 7-8)
 my soul is bereft of peace; I have forgotten what happiness is; so I say, "My endurance has perished; so has my hope from the LORD."  (v. 17-18)
But then the writer remembers:

But this I call to mind, and therefore I have hope: The steadfast love of the LORD never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness. "The LORD is my portion," says my soul, "therefore I will hope in him." The LORD is good to those who wait for him, to the soul who seeks him. It is good that one should wait quietly for the salvation of the LORD. (Lamentations 3:21-26)
As more and more things are made difficult or "taken away" I realize where my hope truly lies. (I never knew how much hope I found in the ability to properly digest until the simple unconcious task of eating and drinking became uncomfortable.) Is it wrong to hope that I can one day sit and eat dinner with my family without pain? No. But if my hope lies only in a having a better body in this lifetime and if I seek that more than I seek God, then I will only be disappointed.  I may never receieve any healing or improvement in my quality of life while I live on this Earth, but I am assured a new body one day because my salvation has been purchased through the death and resurrection of Jesus Christ and He is my hope. I may not feel hopeful (and many days I do not), but these truths I must call to mind: "The Lord is my portion, therefore I will hope in him". And  hope in Christ is everything I need.


  1. I am so sorry to hear that the infusions didn't help; another in a series of too many disappointments!
    Your post made me think of Romans 5:2-5 "And we boast in the hope of the glory of God. Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us." Thank you for your perseverance, character, and hope in the midst of your sufferings. May the outcome be an ever deeper knowledge and profound experience of the LOVE of God through the Holy Spirit. Knowing HIS LOVE makes it all worthwhile.

  2. I am heartbroken for you that the infusions did not work. I can't even imagine all the frustration and pain you are going through. My experience pales in comparison. I am praying for you often and asking the Lord to grant you wisdom and peace and relief. I know you are weary. Take heart, for HE has overcome the world, and one day you will be with Him and be pain free!

  3. I'm so sorry the infusions were such a disappointment. It is hard to balance acceptance & hope. Its a constant struggle between trying your best to continue with some sort of every day life & trying to find some treatment to give you a better future. You always have a great way of getting to the heart of things when you say "if my hope lies only in a having a better body in this lifetime and if I seek that more than I seek God, then I will only be disappointed." It makes all the difference to put our hope in God but life is still a struggle & I pray that you will eventually find some treatment that will make life a little more manageable. hang in there!

  4. Hi there,

    I follow your blog once in a while, i had a lot of similar pain.. Have you checked in to trying long term antibiotics? I finished 6 months of antibiotics a month ago and feel great. I had a lot of similar symptoms.. kept going back and forth between lyme and crps/fibro.. all my lyme tests came back negative, but I was told to check out an LLMD.. a specialist in lyme.. he actually thinks that I had lyme.. I did the treatment regimine and feel pretty good. still have some bad days, but few in comparison to before. Anyhow I just read that antibiotics may help crps as well. Check in to it!