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Coming to Grips with very Bad News

Sunday, October 31, 2010

I have been facing three (related) profound struggles in the past three days. One is that I discovered that my pain meds were the culprit in my lack of sleeping in the past week or two. To test this I went off of both of them...and sure enough; started sleeping again. (slept all of yesterday almost to make up for it)...The meds were still in my system for a couple of days, so,other than my neck, the pain was bearable. Now, today, however the story has gotten much worse on that front. ....It is now brutal. And I know that this, in itself means getting VERY little sleep, due to interruption by pain...So one has to wonder; which is worse: little pain and no sleep? Or MUCH pain and some sleep? If I had a choice, I'd take the former, unfortunately people don't survive for long that way.

So that was one issue. The other is that my methotrexate (the drug I take for Rheumatoid Arthritis) was recalled (glass fragments in the injection bottles), and now because of that, there is such a shortage, that it's unavailable anywhere! This means that I will be soon in very bad shape on that front as well.

I had cervical and lumbar MRIs last week and on Friday at my rheumatologist's I got the results. She looked extremely distressed while reading them and told me, "i've read your reports and looked at the films." She stopped and then struggled with tears. I said, "it's bad. I know." She told me a long list of things that are wrong with my spine...on every level of vertebrae there is severe damage and degeneration...Things that cannot end well. Things that will make my life more of a living hell than it already is. Things I fear. And things that will stress even MY level of tolerance in pain and disabililty. Things that make me pray that God will take me before they happen.

So, out the window went my enthusiasm and determination to exercise.
Out the window went my desire to eat well and track food (actually, out the window went my appetite)...I've spent two days now, struggliing to regain my focus and positive hopes and determination to beat these illnesses. One Spark friend told me to refuse to accept it. To fight...that people have beaten great odds and horrible illnesses just by refusing to give into them. And she's right. I know she is. I need to look at the doc's warning that by continuing to exercise, I risk paralysis quicker, just like I looked at mh pulmonologist's prediction andn warning that any exercise at all will not be tolerated by my lungs. And I ignored it! And resolved to do things my way; using my best intuition and ability to research...and used discretion in how much I do (more discretion than I showed with my hip replacement!)

I cannot lose the beachhead I fought so hard to gain! I must continue to strive. I must remember the MRI tech 's comment and then excitement about my large weight loss (he evidently either recalled it or compared it to past charts) and also my hip surgeon's admiration and exclamation: "You have a whole different look about you. You look like another person!" And I know he was not only referring to my weight loss, but also to my resolve to be healthy and not to walk away from at the first bump in the road (or should I say "another" bump in the road!)

I have to meditate and pray a bit to strenghten my heart and my will in this matter. I have to read some more motivating stories and message boards. And most of all, I need to drag my dragging butt to the exercise mat or to the outside to walk; put on a DVD and GET MOVING!
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Member Comments About This Blog Post
    3607 days ago
    I'm so sorry to hear your bad news, Cynthia. I've done chair exercises in the past when I couldn't walk (knee replacement).

    I also have a saying that I tell myself over and over when all I can see ahead are bumps in the road: Let go; let God. He will give you messages on what you should do, if you're aware and listening.

    I'll keep you in my prayers!
    3609 days ago
    I will pray for you. One thing you can do is research on the internet. You have probably been on most every pain med that will help, but maybe there is one in testing that can be tried. I don't know where to look. I would enjoy meyself I think and do what I wanted but remember don't do to much. This could bring the bad stuff on sooner. Remember to smile. emoticon
    3610 days ago
    Cynthia I know you'd like to live without pain meds but have you tried Melatonin for sleep? It's over the counter and very reliable for sleep. It's non addictive. Other than that I can only offer prayer for you. Prayer can heal you when you think you are out of options. With God all things are possible. Don't give up HOPE.
    3610 days ago
  • MSTKAY76
    Cynthia, my heart just aches for you. I understand, all too well, the pain you are going through, the mixed emotions about activity vs. inactivity, the stress of your health, the lack of sleep, the decreased immune, etc. I have lived it for nearly seven years now and understand it fully.

    I am still on pain medication, though I'm attempting to lose enough weight and get healthy enough, strong enough to be able to do without it.

    I was injured severely playing volleyball in Feb 2004. 43 surgeries followed to put me back together again. Unfortunately, due to all the nerve damage, ailments, many of them, began to domino even though the physical was as fixed/repaired as it would/could get/be. Of course, each of those ailments is incurable and extremely painful. Of course.

    That first year, due to the nerve damage and the other physical damage to my hip, knee, ankle and foot (although repaired now) the doctors said I'd likely never walk again. It took two years of determination and a helluva lotta pain, blood, sweat and tears, but I am walking now. I just gave my cane away in Jan 2010. I walk completely unaided now despite what the docs thought. Some days are painful. Some days there is no pain at all.

    Since starting an exercise routine, I've come to one very concrete conclusion, while movement and activity further jeopardize my health, the pain of inactivity is completely unbearable. I actually feel less pain after I've exercised in moderation.

    Moderation - a very difficult creature to figure out for each individual. What's moderate for me, may not be moderate for you. It's all about intuition, being in tune with and listening to your body.

    Don't give up, Cynthia. I know it doesn't sound good nor does it look good, but it's possible to prove them all wrong. I know firsthand.

    Wishing you all the best as you soldier on. Please let me know if there's anything I can do to help.

    3610 days ago
    There's an old expression ---"between a rock and a hard place"--and that seems to be where you are----\I am so sorry------Can you not insist that your MD give you pain med that does not cause sleep deprivation---thee are some on the market---You must have sleep---it's what helps to heal the body-----Sleep and weight loss are what will help you the most----i think you should follow your instinct as you have been doing and listen to your body!
    God Bless!!
    3610 days ago
    I can't imagine what you're going through but I know you have to be one of the strongest people ever to be able to face all these issues and be the person who has not only lost weight in the middle of all this, but to take bad news as well as you have.

    Like others have said, fight it and let the pain be the enemy. I am no expert and certainly can't give advice on something that I have not experienced, but hopefully something (the meds) will even out the pain and the sleep issue eventually.
    3610 days ago
    So sorry to hear of this diagnosis. So glad to hear that you are willing to keep going and not give up. Do what you can, when you can. Be cautious! Prayers will be heard. You will be remembered at church this morning and I will try to remember to put your name down weekly. Blessings! emoticon emoticon mary
    3610 days ago
    You attitude will help you and please know you are an inspiration! I agree... FIGHT... but fight with intelligence and vigilance. Listen to your body. Meditation and relaxation techniques should be a big help too and I also believe in positive affirmations. They keep your mood up and that can only be a good thing.
    I will keep you in my thoughts and prayers and wish the very best for you. Stay in touch with your Sparkfriends... they are such a wonderful support and resource!
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    3610 days ago
  • SKINNY341
    you will get through this. It may not be easy at first but continue to stay strong and positive. Try meditation and yoga or palates and see if that helps. I don't pray nor do I believe much of the bible because of all the bs that goes on in these churches so I am becoming a yogi or a buddist. emoticon emoticon
    3610 days ago
    Gentle hugs! I am experiencing a difficulty in sleeping too, and am thinking it is my meds for my neck and back too. It can be so frustrating.
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    3610 days ago
  • JUDITH316
    Indeed you have a rough road to tread, however, having said that, by the sounds of the positive comments by your Health Care Providers it sounds to me that all your hard work in the face of adversity is helping you, your weight loss and appearance shows that. I would like to encourage you my friend, in spite of all the bad news, our God is able, He holds the keys of healing and strength in His Hands, what the MRI results say and what God says are 2 different things. The bottom line is we serve a Mighty God who will take you by the hand and will walk you every step of the way to victory. How do I know this to be true, you see I am in similar circumstances, debilitating pain and disability, I have come from being completely bedridden for 1 year in neck and leg braces to being up out of the bed and can now exercise and now use a manual wheelchair and can stand a little with assistance am trusting God for the rest of my healing and my friend I will stand with you trusting that things will get better for you. I assure you my prayers will be with you always... Blessings & Hugs..

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    3610 days ago
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