A few months ago, I started the process of fixing my neck and the severe pain that came with it. They found basically that I've got vertebrae that are rubbing together, pressing into my spinal cord on one side and into my C6 nerve on the other. I actually have little dents in them. On top of that, I have some nerves that are compressed by herniated discs that are beyond hope. Between the extent of the problems and my hypermobility, they just don't think rebuilding my neck is an option, so we went for testing to see if I might be able to do a spinal cord stimulator. This little gadget sends signals to alter the way the brain senses nerve pain in a specific area of the spine.
Now, this requires a week-long test before you get the final one. They want to be sure it will work. You go in, awake, to the OR, and have two holes popped into your mid-back. They take long wires, feed them into your spinal column and alongside your spinal cord. They fiddle with them until you stop screaming, I guess. Then they stitch up the holes around the wires that are hanging out, hook up the stimulator, and tape it all to your back. Off you go for a week without a shower and this contraption taped to your back attached to wires coming out from your spine. Would you be anxious about that? Sure you would! Well, I already have anxiety issues, but when I asked for something before this procedure to help me calm down, they at first said sure. In fact, the first doctor said it should be no big deal at all. He sent me to the pain specialist who sent his PA to talk to me. She, too, thought it would be fine. Then I started to want more information, to fully understand the process and let them know about me as a person and the anxiety I felt. I questioned their choices about certain other tests, and then they decided to tell me I was suddenly ineligible for the trial. What happened? They decided I was a trouble patient and used the right words in a professionally worded email so that there would be nothing to make them appear in the wrong. I'm well educated, a former nurse, knowledgeable about my health issues, and a royal pain in their collective ass. Doctors don't like that.
The real problem is that before all this, they told me it would, without something done, get worse. Now there's nothing that is to be done. I don't/can't take pain meds, and now all surgical options are off the table too. What can I expect? Increasing pain in my neck, back and both arms, loss of use of my left arm, increasing numbness in my arms, and gods forbid, being paralyzed. Yep, all this can be mine! Lucky me!
I've gone through a ton of tests, and actually needed one more, but they won't do it. Doctors are refusing to help someone in pain in the United States. Let that sink in for a minute. There but for the grace of God and all that, right? Don't take your health for granted. It sucks to not have it anymore and to not have anyone in the medical field who will help.
All this pisses me off. But you want to know what I really hate? I cut 13 inches off my beautiful hair to have these people tell me I needed surgery and then back out, then tell me I needed this stimulator and now backing out again. I lost 13 inches of my fucking hair for this?
Don't assume your doctor gives a shit or has the ability to give a shit about you or your situation. Don't assume they're there to help you. They are there to look at you as the organ or body part they treat and see you from a science perspective. They do not care if you are a mother, father, grandparent or teacher, and they are have no respect for those in pain who are suffering. They are there to patch you up quickly and shuffle you out- maximum dollar, minimum time. They give you drugs that will kill you, and they convince you that they know what is best for you while probably not even knowing your name without looking at the chart.
Don't assume anything with the medical field. Don't ever assume they are there for you. You are a number, or set of numbers, in a computer, with a list of meds to refill every so often. You are tests ordered, and bills due, and the more quiet you are and the more you nod your head, the easier things will go.
I've lost the chance at pain relief, the eventual use of my arms, maybe someday I'll lose more. The pain will increase, the numbness will too. And sure the hair will grow back. But I chopped it off in good faith of people who said that SOMETHING was going to happen to help. I won't ever give up anything to a physician again. I won't ever believe what they say, or trust what they do. And I didn't have a lot of faith in them to start with. Don't ever let your doctor take anything from you, not even 13 inches.
“In my opinion, our health care system has failed when a doctor fails to treat an illness that is treatable.”
― Kevin Alan Lee, The Split Mind: Schizophrenia from an Insider's Point of View
Thursday, February 18, 2016
Thursday, February 4, 2016
A Whole New Can of Worms
Back in the 1950s, worms for fishermen were sold in cans, just like veggies are. So, the fisherman would head to the water, open his can of worms, and if he wasn't careful, he'd often lose some who realized the door was open and freedom from being fish food was right there! The fisherman could lose the worms, be in a mess and end up needing to open a whole new can of worms.
So lately, I've been through every test known to man trying to get my back pain handled. We were sure and certain surgery was the option until all those worms ran off and we realized it wasn't even possible to do surgery. Another can of worms needs to be opened now, and no matter what I do, those damn worms may run for it too.
Instead of one surgery to fix my problem, I will likely have to have multiple procedures. First, a psych eval because some people lose the plot over having a piece of machinery inside their body and wires up their spinal cord. Considering the PA was taking notes from me on my illnesses and where to locate current research, even she thought for me that was a joke. I've cut 13 inches of hair off my head in prep for all this. I'm ready. I'm scared as hell, but ready. A few weeks after that, I'll have two holes put in my back with a set of large bore needles and wires will go into the space between my spine and my spinal cord from the middle of my back up to the neck. They'll stitch the wires in place where they come out of my back and attach the little box to my back on the outside and tape the whole thing on and up for a week. This includes a week of no showers or baths. I've been advised to buy up lots and lots of baby wipes. If anyone would like to donate to the baby wipe fund, let me know! Fun stuff, right?! This thing is supposed to help my pain from a severely damaged major nerve as well as some pinching spots in my spinal cord. So one stinky week seems a small price to pay for the possibility of pain reduction.
If it works, they'll take out the temp unit, and a week or two later they'll knock me out, reroute the permanent wires, put a pouch in my butt to hold the machine, and then I start all over again for unit number two. If this first one helps, I'll do a second trial for another unit that will work on my lower back pain, which is out of control too. I'll literally have a tiny remote control in each ass cheek at that point. Fun stuff, right? The Bionic Medium!
In the middle of all this, I have to have another MRI of my brain, because they found a spot in there that doesn't look right and they're concerned about my lower back now as much as the neck issue. So we have to be sure I don't have brain cancer (yep, the word "tumor" has been used too often for my liking), and have another good look at my spine top to bottom just to be double sure we can't fix something in a better way.
If I'm lucky, by the time Fall comes around, I'll be done, at least with my back. That doesn't mean I'm done with everything that needs sorting!
The biggest risk with this is that one of those little wires nicks my spinal cord while they're placing them, and then it's paralysis with no recovery. This isn't an easy thing, but I've heard people say that when they work, they work really well. Everything has risk, though. Even going to the store can be risky. Risk can make life so much better. I don't want to think about the worst possibility; I prefer to be hopeful but it isn't easy. This is scary stuff just thinking about the mechanics of placement of this contraption.
Almost worse than all this is the idea it may not work. That means a lot of misery in my life that has to stick around forever. I sure would like a break.
I hate that my health has taken me away from talking to so many people, doing so many things. I hate that it's been my main focus and that nothing else seems to have room anymore. It's not easy being this soul in this broken body. My soul feels a need to help people so much, but my body is falling apart, and it's the only vessel my soul has, so I have to put my focus on myself first.
I wish people were more patient with me, but even after I post that I'm unable to help folks with readings and such, I will inevitably get several messages that all say "It'll just take a second to answer this" and then I get a huge story with all kinds of variables. It can be quite interesting being a counselor of others because very often, there are no other counselors around when a counselor needs an ear.
I'm immeasurably grateful for a small group of ladies who love me and understand me, that I can vent to, and my husband is sure to be forgiven all his sins and maybe sainted for taking care of me and loving me through every emotional and physical breakdown. Without a small circle of really understanding people, I'd never have a positive moment. My friends and family save my life every day.
I share these things about me because this is who I am. I'm broken, I'm weak sometimes, and I have shit going on. I'm like you. I'm blessed to have so many people who pray for me, send me healing energy, and love me. I get messages with so much love from people and I'm incredibly grateful for each one, even if I don't answer, or can't answer. Some people, just by virtue of their life's work, have a lot that is expected of them, but also are blessed to have a lot of people who care. Every message to me of love and healing matter. Every time someone says "I understand" because they too live with pain and illness, it helps. I understand pain, hurt, sorrow, anger, depression, frustration....and there's a family of people who all suffer pain in ways most can't imagine that support me, and I try to support them too. That family makes all the difference on the bad days, and it gives me a group with whom to share hope and possibility when it's a not-so-bad day.
I don't want to hide my story from people because it always seems to reach someone who needs it. I'm a medium, a psychic, but I'm also an advocate, a mom, a patient, a fighter, a surrenderer to the process of bearing this burden with laughter and love as often as I can, and I am accepting of the tears, the screams and the frustrations that come along as well. I want to help other people who are hurting to find the faith that they can go on another day. Sometimes all we can do is look at the immediate, and I want to help people in those moments see further with hope and faith.
Every time a doctor tells me one thing, it never leads to a simple solution. I may not be facing the higher risk of death that I was before when we thought surgery was on the table, but paralysis, severe nerve damage, worsening of my symptoms, and more are all possible. Not fun. Not easy to face. Just when I think I have one can of worms all contained and wiggling is at a minimum, another can pops the lid and off I go trying to chase them down. A new can has popped open, and it's going to take a long time to gather them up and get them in their place. All I ask for is patience and support.
It says nothing against the ripeness of a spirit that it has a few worms.
So lately, I've been through every test known to man trying to get my back pain handled. We were sure and certain surgery was the option until all those worms ran off and we realized it wasn't even possible to do surgery. Another can of worms needs to be opened now, and no matter what I do, those damn worms may run for it too.
Instead of one surgery to fix my problem, I will likely have to have multiple procedures. First, a psych eval because some people lose the plot over having a piece of machinery inside their body and wires up their spinal cord. Considering the PA was taking notes from me on my illnesses and where to locate current research, even she thought for me that was a joke. I've cut 13 inches of hair off my head in prep for all this. I'm ready. I'm scared as hell, but ready. A few weeks after that, I'll have two holes put in my back with a set of large bore needles and wires will go into the space between my spine and my spinal cord from the middle of my back up to the neck. They'll stitch the wires in place where they come out of my back and attach the little box to my back on the outside and tape the whole thing on and up for a week. This includes a week of no showers or baths. I've been advised to buy up lots and lots of baby wipes. If anyone would like to donate to the baby wipe fund, let me know! Fun stuff, right?! This thing is supposed to help my pain from a severely damaged major nerve as well as some pinching spots in my spinal cord. So one stinky week seems a small price to pay for the possibility of pain reduction.
If it works, they'll take out the temp unit, and a week or two later they'll knock me out, reroute the permanent wires, put a pouch in my butt to hold the machine, and then I start all over again for unit number two. If this first one helps, I'll do a second trial for another unit that will work on my lower back pain, which is out of control too. I'll literally have a tiny remote control in each ass cheek at that point. Fun stuff, right? The Bionic Medium!
In the middle of all this, I have to have another MRI of my brain, because they found a spot in there that doesn't look right and they're concerned about my lower back now as much as the neck issue. So we have to be sure I don't have brain cancer (yep, the word "tumor" has been used too often for my liking), and have another good look at my spine top to bottom just to be double sure we can't fix something in a better way.
If I'm lucky, by the time Fall comes around, I'll be done, at least with my back. That doesn't mean I'm done with everything that needs sorting!
The biggest risk with this is that one of those little wires nicks my spinal cord while they're placing them, and then it's paralysis with no recovery. This isn't an easy thing, but I've heard people say that when they work, they work really well. Everything has risk, though. Even going to the store can be risky. Risk can make life so much better. I don't want to think about the worst possibility; I prefer to be hopeful but it isn't easy. This is scary stuff just thinking about the mechanics of placement of this contraption.
Almost worse than all this is the idea it may not work. That means a lot of misery in my life that has to stick around forever. I sure would like a break.
I hate that my health has taken me away from talking to so many people, doing so many things. I hate that it's been my main focus and that nothing else seems to have room anymore. It's not easy being this soul in this broken body. My soul feels a need to help people so much, but my body is falling apart, and it's the only vessel my soul has, so I have to put my focus on myself first.
I wish people were more patient with me, but even after I post that I'm unable to help folks with readings and such, I will inevitably get several messages that all say "It'll just take a second to answer this" and then I get a huge story with all kinds of variables. It can be quite interesting being a counselor of others because very often, there are no other counselors around when a counselor needs an ear.
I'm immeasurably grateful for a small group of ladies who love me and understand me, that I can vent to, and my husband is sure to be forgiven all his sins and maybe sainted for taking care of me and loving me through every emotional and physical breakdown. Without a small circle of really understanding people, I'd never have a positive moment. My friends and family save my life every day.
I share these things about me because this is who I am. I'm broken, I'm weak sometimes, and I have shit going on. I'm like you. I'm blessed to have so many people who pray for me, send me healing energy, and love me. I get messages with so much love from people and I'm incredibly grateful for each one, even if I don't answer, or can't answer. Some people, just by virtue of their life's work, have a lot that is expected of them, but also are blessed to have a lot of people who care. Every message to me of love and healing matter. Every time someone says "I understand" because they too live with pain and illness, it helps. I understand pain, hurt, sorrow, anger, depression, frustration....and there's a family of people who all suffer pain in ways most can't imagine that support me, and I try to support them too. That family makes all the difference on the bad days, and it gives me a group with whom to share hope and possibility when it's a not-so-bad day.
I don't want to hide my story from people because it always seems to reach someone who needs it. I'm a medium, a psychic, but I'm also an advocate, a mom, a patient, a fighter, a surrenderer to the process of bearing this burden with laughter and love as often as I can, and I am accepting of the tears, the screams and the frustrations that come along as well. I want to help other people who are hurting to find the faith that they can go on another day. Sometimes all we can do is look at the immediate, and I want to help people in those moments see further with hope and faith.
Every time a doctor tells me one thing, it never leads to a simple solution. I may not be facing the higher risk of death that I was before when we thought surgery was on the table, but paralysis, severe nerve damage, worsening of my symptoms, and more are all possible. Not fun. Not easy to face. Just when I think I have one can of worms all contained and wiggling is at a minimum, another can pops the lid and off I go trying to chase them down. A new can has popped open, and it's going to take a long time to gather them up and get them in their place. All I ask for is patience and support.
It says nothing against the ripeness of a spirit that it has a few worms.
Friedrich Nietzsche
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