Monday, August 3, 2009

When Sleep Is The Only Way Out

Having not posted for awhile now, I find it hard to just jump in and post. There is really no big explanation for this, just a few little items going on around my place. Oh, and a week of pain that has not given me one moment of relief.


Of course there was my medication change. That was attempted and I hung in there like a real trooper for two weeks until I said, "No more!" It was making my head feel fuzzy, my sleep was off and interrupted because I am known to be a night owl, and to have an every 8 hour med; it can get tricky sometimes. And once I'm up, I'm up. Especially if it is early morning, that beautiful time when for just a moment, there is no light, yet there is the thought of it...then moments later the sunrise begins. It never fails to hit me in the heart....a feeling that a new chance in my life is just beginning. Once I can see the homes around me, and the 'real' sunrise is over, life starts. Nothing changes. That new chance for some kind of change, especially in my pain.


I have only tried a medication change twice in the last 5 years. Ironically enough, it was a couple years ago, also in the summer that I attempted a change. It failed big time. I felt what my pain is really like without the help of my main medication. It is unspeakable how strong and horrible that week was. I believe in giving these med changes a try, and it takes more than a few days to see if the new med, or a change in an existing med, will be successful. During these days, comes the strength in me that must be given from God to endure the days of such strong pain.


This medication change was unsuccessful. That alone worries me. What is happening to me now is that it is very hard for me to stand up. Now that scares me. A lot. I woke today to see the face of my son, who was checking on me to see why I was sleeping so long. The moment I woke, he said I asked what day it was, what time it was, then he saw my facial expression chance when I realized the pain. I moved, and let out an odd sounding combination of a scream and a grunt. Sweet son said, "Sometimes when I wake with pain mom, I turn onto my stomach and it really helps." Bless his heart. When I tried that, knowing it was only to cause more pain, (I was doing it for him,) I couldn't even move into that position. Just getting into some kind of sitting position to get out of bed was like climbing a mountain. But a bigger mountain was to be climbed once out of bed. Just getting teeth brushed, (I don't understand why sinks are set so low in homes,) having to bend at the waist and then stand up from that, was a huge mountain. I climbed it, as I do every morning.


My son made coffee and kept me company while I was sitting on the couch with the heating pad. That one place is the only area that I get some type of relief from the deep, stinging pain. He was doing some wash and left the room while I got up and got a cup of coffee. Another mountain. Climbed it, but afraid of falling with each step up the hill.


It is only about 4 minutes that I feel I can stand without assistance. Spilled the coffee as I was picking up the mug from the counter. I had to get back to the couch. It was a very long ten steps today. WHY CAN'T I STAND UP? What is going on inside my spine?? It's been 6 years since my last MRI. I can only imagine what has changed since then. But being on Pain Management now, and for years, they do not want MRI's, unless there is something to be done inside. Like a Morphine pump. After my Spinal Cord Stimulator Trial, and hearing the docs in the OR talk with shock in their voices about the amount of scar tissue and Osteophytes, I wonder now if a Morphine pump could even be implanted!


Something new is going on in my spine. Forget medications for a second. Why is my pain worse, did not respond to the rise in medication, (actually it was worse during that;) and why do I have the Neuropathy that I've had for years now wrapping around the front to the midline, making me feel like a band is around my chest, affecting my breathing, and WHY do I feel so unstable in my spine--that presents itself as not being able to stand???


I am in so much pain as I write this now. I need to stop, and get back to the couch. No amount of meds help today and the past month. I have had to ask my son and roommate to go do errands for me. I am scared. About feeling so weak in my spine, and standing is scary. I feel as if I will just collapse into a little heap. Spineless. Not the way that word is used in other ways. But it is the best word to use to describe my pain and what will happen if I DO FALL!! I am spineless!


Yet why does all the pain that is constantly rising in intensity, length, depth and from morning till night all still revolve around my Thoracic spine?? I want to see a new MRI. I want my doctor to see what exactly is going on; not just treat my symptoms. Yet I know that when a patient gets to Pain Management, the MRI's, CT scans, etc., stop! I had all those, over and over as we tried every damn procedure available to man, and they failed. They all failed. Hence--Pain Management. There is no more surgery, nothing that can 'fix' all the problems that lay before the surgeons. I tried it twice. The second surgery, which ended up being a Costotransversectomy with fusion, foraminotomy and diskectomy, (being known as the 'Big Surgery'), my Neurosurgeon from a very well known University, who also taught Neurosurgery there, began by recommending that I see a doctor in another state; who at the time was the only doctor in the U.S. known to do anterior***(L. Before, or in front,) approaches Endoscopically***(Inspection of body organs or cavities by use of the Endoscope,) for my disc at T9/T10 herniated laterally/anteriorly. After looking over my MRI's, the out of state doctor told my surgeon he could not get at the disc, and perform a fusion Endoscopically, therefore I was not a candidate.

Ahhh to have a couple of band-aid scars on my tummy.....that of course not being the most important issue with my surgeon now having to do the surgery from the back; the post-surgery pain was to be extreme. The morbidity and mortality rates rose many times over. Let's face it--what I underwent was an extremely dangerous surgery. The post-op pain WAS horrid. But I'm here to tell my stories and let others that are in the same boat with Chronic Pain hear me, know you are not alone, you are certainly not alone!!!



My heart goes out to anyone in pain this moment as I type. May you have the strength to manage your pain, even when it seems as if this cycle will never end. I'll say it now, that during the last 6 days of pain from waking-- till sleep that night: on the 5th day I just wanted to sleep the next day away. I had to get up of course, with all that little stuff I mentioned is going on in my life, (SO not little!), but I just wanted to not feel the pain! If sleep is the only way I can get relief, then God, let me sleep.


And today He did.

Gentle Hugs!! <3>

13 comments:

  1. I have missed you so much and worried about you. I'm so very sorry to hear about what you've been going through and hope you get both some answers and relief soon! Take care!

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  2. Shauna, I've missed and worried and wondered about you, too! I'm so sorry to hear that you've been in such a bad way and will pray that you find some relief, even just a teensie bit, soon.

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  3. Hi Shauna how sad i am to hear what you are suffering and going through.I have suffered severe chronic back pain now for 18 years and it hit me when i was a young fit thirty year old,i had bouts where i thought i was winning the battle but sad to say it caught up with me again over a year ago.I have just had a three level discography and it is between the surgeon and my pain specialist of which way things are going to go,my specialist says a morphine pump and the surgeon is talking fusion and facet spaces.I am so over it as people dont seem to understand in my wifes family and think it is just a back ache,but when taking heavy medications (opiates) and like you sometimes not being able to get out of bed,i feel worst in myself as all i want to do is live a normal life,like go to work and do normal things,one of them is to get out of my pajamas,which is sometimes a major chore.I wish you well with your recovery and pray from the bottom of my heart you get well soon and that 1 day all of us chronic pain sufferers will be free of this debilitating condition,you take care and stay positive as we will all beat this condition one day.
    Kindest regards Rich from west ozy.
    didy48@iinet.net.au

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  4. I had been worried about you, I was hoping you were off on a cruise ship laughing, dancing and having a good time (we all deserve it). Realistically though, I was afraid you were having a rough time. I'm so sorry that you're in pain and having to suffer through it.

    I'm glad your son is there to help you some. Please know that you are in my prayers today.

    Terry

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  5. PROFESSOR:

    Thank you so much for your concern. I know it is not like me to 'disappear' from my blog, but this med change had me pretty woozy. I hope that you are doing well also and when I actually get some extra TIME (what in the world is THAT?), I will visit you.

    Gentle Hugs honey!! <3


    CARLEEN:

    Thanks to you also sweetheart for your care and worry about me when I wasn't around for awhile....I just am so blessed to have online friends like you and everyone else who cares enough to 'check' on me.

    I wish you days of low or no pain. I'm truly hanging in by a thread.

    Gentle Hugs <3

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  6. Dear Rich,

    I am glad you found my blog as I see (again) that there are MANY chronic pain patients out there and you are NOT ALONE!!

    I know from experience about the people in our lives not understanding about our pain, thinking it is only a backache. Know why they think that way?? Usually it is b/c they have no idea how it is to feel the pain that we do, and then, to feel it daily. If they have no personal point of reference, they truly can not understand and as many surgeries as we have, as many days in jammies we have, it will never be truly understood by others, unless they suffer themselves.

    Do you know what it is like to have family that doesn't care enough to just call for 5 lousy minutes and ask, "How are you doing?" It hurts. A lot. Then...you begin to see who really, really cares about our lives. The ones that care, be it relatives, friends, etc., will call. They will email. They will ask how we are. Those are the types of people that I keep in my life. The others....well....what can I say. Maybe the expectations are too high??

    I could never tell you what to do Rich about surgery vs. a Morphine pump. I will just tell you from what has been my experience; that surgery took away the pain for a very short time. Then it not only came back, it came back hard. And the levels above a fusion are well known to then herniate, ( as mine did), as that level becomes more unstable, and it then seems like an ongoing battle of the vertebrae and discs!!

    I wish you low pain, time and quiet to think and to make your decision, and a very good friend or two to talk with. My 2 best friends have become very important in my life. They truly care. And THAT alone some days, can make me feel better.

    Let me know how you are doing. I will keep you in my prayers for lower pain, and your family to understand just a bit more.

    Gentle Hugs <3

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  7. Terry,

    How great to see you!! And another thank you to someone that cares enough to worry...(that sounded odd to me!) :-X you know what I mean. Thanks for the prayers, you are certainly in mine also today.

    Are you feeling ok? How is your pain?

    Thank you for caring and I care about you also.

    Gentle Hugs <3

    Hmmmm the thought of me on a cruise ship dancing is a real sight in my minds eye...what a dream that would be!! Though the last time I was on a cruise ship I was proposed to! Thank God for that YES I gave him, for I was then given my wonderful son. ;-)

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  8. Hi Shauna and thank you for the reply and i hope you are fairing well and having some decent days with your pain,in fact i say that for all the chronic sufferers out there also.
    I was just thinking how bad it must of been for chronic pain sufferers before the internet? Now with the internet people can write on a blog such as yours and discover they are not alone with there condition,sometimes technology does have its advantages.
    Many thanks also for your kind words as they made so much sense and again being a chronic sufferer you summed up things brilliantly,no wonder you have a title of the professor (-:
    I have have had a terrible time pain wise since i last wrote on your blog and say sorry to you,for taking so long to write on it again. I had a procedure done in hospital last Friday and have been in total agony since,i have spent many days in PJs (jammies as you say)and in bed, as the pain has been unbearable,not to mention high amounts of morphine opiates.
    I go into hospital this coming Monday night for surgery on the Tuesday,the neuro surgeon and pain specialist want to try spacers in my spine to elevate my disks and hopefully alleviate the pain. If this fails i may only have another two options of fusions by two or a morphine pump. I believe they are using three of these prosthetics in my spine
    But how is this for remarkable things,they say you only have to be in hospital for a few days,which is a bonus as i feel like i am in a cage when i am in hospital.
    Enough of me,so how are you fairing and what is happening with you,if you don't mind me asking that is. I read on a earlier blog you are feeling woozy from a change of medications,i hope this has sorted itself out and you are feeling much better?
    I often think of all these medications we take and how they react with us,but for some unknown reason why they never ever really take the pain away,like some days may be better than others,it is kind of strange how that works.
    I also totally agree with what you said about family taking five minutes to make a telephone call to see how you are(backtracking here because of medication sorry)it can be very hurtfull not to mention how selfish some people become when you are sick.
    Anyway Shauna i guess i have rambled on a fair bit here and do apologize for being all over the place,but am sure you and other sufferers will understand and forgive me.
    I wish you Shauna and all the people suffering illness, pain free days and peacefull days plus lots of kindness given to you all.
    Take care,Rich from west .
    didy48@iinet.net.au

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  9. Oh hun, sorry to hear that you're feeling poorly. I hope that by now you're getting some relief.

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  10. I wish you the best and hope of relief.

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  11. Shauna,

    It's been awhile. Thinking of you. Hope you are feeling better!

    Jeanne

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  12. Hi there Richo,

    I sure hope that you found some relief from your latest procedure. I am very curious as to what the outcome was and if you have decided to go with fusions in the future.

    I have considered a Morphine pump also, and as of yet, it's not something that I want to pursue. But for some, it is THE answer. We are all so different in how we react to the same procedure/surgery, etc.

    I am going to write you to keep in touch easier than just on here.

    I pray for you to have relief and thank you so much for checking in!!

    Gentle Hugs <3

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  13. Dear Connie,

    Thank you for the well-wishes honey...it has just been such a crazy time in life over the last months and has taken it's toll. Forgive my late reply!! I hope that you are doing well! Will 'stop by' ASAP. Gentle Hugs!!!


    Hi Blase,

    Spent time on your blog and really enjoyed myself! Thank you so much for the kind wishes and thoughts. You're a funny guy!! (Sweet too!)
    Gentle Hugs...



    Dear Jeanne,

    It HAS been a long time!! I sure hope that things are going good for you...need to cruise by and see you also...how is the 'new' site going?? Think of you often sweetie!!

    Gentle Hugs!! <3 <3 <3

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