~~~~~~~~~ "We are here for only a moment, wanderers and sojourners in the land as our ancestors were before us. Our days on earth are like a passing shadow, gone so soon without a trace." I Chron. 29:15 NLT





Saturday, February 20, 2010

Medical Saga

Warning: For anyone who cares to know about my story of living with chronic pain and illness, this ones for you. I'm praying that by sharing my journey someone will be helped or encouraged. Feel free to join the dialogue with your comments, encouragements, questions, or suggestions. If this isn't your cup-of-tea, thank you for not slamming the door on your way out.

I believe that through emotional, physical, or mental suffering and pain, God is working to make us into the persons we're meant to be, to glorify Him as we're on our spiritual journey in our human bodies. He hasn't left us comfortless, but has given us His angels, Christ--who deeply loves and cares for us--and the Holy Spirit to guide and comfort us.

I'm on a long round-about journey, but am finally beginning to understand what Hannah Whitall Smith wrote: "It has been well said that 'earthly cares are a heavenly discipline.' But they are even something better than discipline,--they are God's chariots sent to take the soul to its high places of triumph....Everything that comes to us becomes a chariot the moment we treat it as such; and on the other hand, even the smallest trials may be a Juggernaut car to crush us into misery or despair if we so consider them. It lies with each of us to choose which they shall be...."

The twists and turns of the journey

Yesterday I slept in till 11:00 a.m.! I took Melatonin (a natural hormone) the night before to help me sleep and, as usual, my body over-reacted. I'm in a medication makeover of sorts--again. It happens every few years. A couple of weeks ago I quit a low-dose med for anxiety that I had taken for years to counter the side-effects of a different medication I took at the time and have since dropped who knows how long ago. I decided it had probably outlasted it's purpose, and since I've had little or no rebound symptoms I apparently was right. My doctor is happy I quit it as it's a controlled substance and he hates to prescribe narcotics, even though I can't live without one once in a while.

If I'd stop seeing doctors, ignorance would be my bliss, but how much fun would that be? When I first started my journey with the chronic pain of peripheral neuropathy, I was determined to find a cure so I could get on with the plans I had made when our nest was empty and we danced into old age. I came to find out there is no cure for the painful neuropathy. "Life goes on while we're making other plans," said John Lennon. He should know.

A lot of my time those first few years was spent finding the "team" of doctors that would accelerate my diagnoses and treatment. Rude awakenings: doctors don't know the cause for my neuropathy, including the experts at Mayo, doctors don't like Idiopathic (unknown) Neuropathy (idiotic would be more accurate), and doctors don't always work as a team. They communicate with one another, to be sure, but that might mean nothing more than that they know what drugs each is prescribing. Lots of frustration occurs between patient and doctors. Sometimes one says one thing and another stands with certainty on what's completely opposite of the other. I've learned not to share with my docs what another doc has said, or what I've found on the internet concerning my situation, altho' doctors seem to be getting used to patients talking about the internet. I rely on experienced friends and reliable internet sites to sort things out for myself. As a result I come across as a very intelligent patient. Hey, I take all the perks I can get!

Life wasn't too great for those first years of pain until I learned to accept the facts. The doctors dropped off of their pedestals like flies. It's a good thing because I'm no longer intimidated by doctors, no matter how many Ph.D's he/she has behind his/her name. I'm paying them (or paying for the insurance that pays them) to find answers and appropriate treatment for me. It takes a lot of time and determination to find a neurologist who can bring him/herself down to the patient's level. One of them wrote my primary doctor that I was highly suggestive and the pain was all in my head. I fired that neuro mucho pronto! You could have chipped the icicles off his ego. Another one could hardly wait to start doing surgery on me. Who knows how many surgeries, and how much money, would have been exploited at my and my insurance's expense had I not, on the advice of others, dropped him like a hot potato. I finally found a Christian neuro who is honest, understanding and kind, and doesn't suggest knives or anything else violent as a cure. I look for doctors with experienced friends and other doctor's referrals, or through prayer and letting God take the reins when searching the phone book. I've found a few keepers.

I'm not happy that by taking away the "old" med my doc started me on yet another anti-depressant. I'm taking Cymbalta, which has helped the Fibromyalgia pain a great deal, may help a little with the peripheral neuropathy pain as well, and treats the depression that often accompanies chronic illnesses and pain. I take Cymbalta in the a.m. and the new anti-depressant at bedtime to try to help me sleep. The first three or four days I evolved into a different personality. I'm usually a listener who can hold up my end of a conversation, but I turned into what my husband becomes when he's had excessive caffeine: talkative and exuberant. Now anyone who knows me knows that exuberant isn't usually the adjective that describes me. My ebullient hubby could hardly get a word in edgewise. Fortunately or unfortunately, depending if it's me or him, these effects didn't last long. Neither have I slept any better. Which is the why of Melatonin.


I shoulda, coulda, woulda, said, "No!" to the doc adding another drug to the mix. But sometimes I get blindsided and hoodwinked into thinking, "Ah, he really cares." I'm caught up in another moment of hoping this will be the magic bullet that outsmarts the pain. This is where the internet is a huge help. I'm able to go online to check what interactions there are between meds. Consequently, I will let my doc know in a couple weeks that I want to take less, not more, drugs. Thank goodness, I'm not an addictive personality, or I'd be a basket case for sure. Maybe I already am. I'd certainly be the last to know, wouldn't I?


Thank God for physicians who have learned the intricacies of human bodies. Thank God for reliable internet sites that have helped answer more questions than I know what to ask. It takes time and diligence but is usually worth it. Two that I visit often are http://www.neuropathy.org/ and http://www.webmd.com/. Web MD has information on most of the more common diseases. I always get copies of my lab and test reports, and go to www.labtestsonline.org/understanding/index.html to decipher them. For drug information, www.drugs.com/drug_information.html.
is extraordinary.

If you've read this far you'll understand why 2 Corinthians 2: 3, 4 has meaning and provides a purpose for my pain: "Praise be to the God and Father of our Lord Jesus Christ. God is the Father who is full of mercy and all comfort. He comforts us every time we have trouble, so when others have trouble, we can comfort them with the same comfort God gives us." (NCV)

4 comments:

Betty said...

I´m glad that last verse gives you strength and meaning in your life. Living with pain is something I can´t imagine and I admire you for doing it and coming out strong on the other end. You are an inspiration and I will be praying for you!

Blue-eyed Blonde said...

I would never have believed I could live with this pain either. Faith and God's grace are what get me through each day and night. Thanks for your prayers.

Dee said...

I am sorry you are on this journey of pain. I can not imagine the intensity of your pain. I use to feel secure with doctors and hospitals and E.R. rooms but now I feel very vulnerable. I am thankful the Lord is always there with me through my trials and sufferings. My thoughts and prayers are with you.

Joyce said...

I am going on a different journey with Dr's than you, but I understand not trusting what some of them have to say. I now have found the right Dr. and all is going well.

Love and Hugs,
Joyce from Creation In Progress