Spoiled Only Child

Finding myself on the map

I need to figure out where I am right now, because things seem very confusing inside of each moment. But maybe if I step back and look at where I am in the larger chronology, it will help me get my brain wrapped around things.

• Mid-April: Symptoms make me feel that my back has officially gone bad again. Back to freakout mode.
• Read stuff on internet and decide Ambien could be causing some of my muscle pain. Try to quit it. Watch my nice long period of good sleep completely fall apart, and become desperate for sleep. But now, even taking the Ambien again doesn't seem to work.
• Go back to psychiatrist, but refuse to take the mood stabilizers again. Why am I paying all this money if I don't want him to give me a bunch of drugs? I do try a different sleeping pill (low-dose antidepressant). It knocks me out but makes me feel like a zombie who can barely move my limbs during the day. Quit it and back to Ambien. He also convinces me to take Valium twice a day, even though I'm terrified of benzo withdrawal.
• Keep trying to fix back. Get two steroid injections. Go to accupuncture and then PT. Feel like my back is improving, but still freak at every twinge.
• During all this, worry constantly about planned trip to California. Decide to cancel trip and cry hysterically about it. Then, before getting around to canceling it, decide to go. Worry, worry, worry about how my back will do and how I will sleep during the trip.
• Beginning of June: Go on CA trip. Amaze myself by hiking long distances several days in a row, camping without even missing my trusty ice pack and heating pad. The more I do, the better things seem to feel. Sleep pretty much fine the whole trip. Deal with some anxiety and pain, but in general, be wonderfully pleasantly surprised at how much I'm able to do.
• Come home and decide fear has been holding me back, and that the trip has shown me that I need to go for it, get back to life and put this whole back thing behind me. Read book about how back pain can be caused by repressed anxiety and feel so encouraged that the pain might be something that can resolve without medical intervention. Feel power over the pain for first time in this whole ordeal.
• Mia goes to PA for a week, and I decide to pull whole life back together. I do work, clean house and exercise every day. Yes! Go me! Sign up for meditation class, start reading book about Cognitive Behavioral Therapy for sleep. I can fix all my problems!
• Mia returns, along with my deepest, darkest fear that I might not be able to be a good mother to her with all my many issues: pain, insomnia, anxiety, depression. Start involuntarily remembering fun times I had with her before all this started, when things felt so much more effortless, and feel jolts of despair and anxiety. (THIS! I THINK THIS MAY BE THE HEART OF THE MATTER.)

OK, I think that brings me to now. Yesterday, I went to the first day of the meditation class. This is the class that I felt was going to heal me. I don't think it's going to work out. It's far away. My back hurt horribly after sitting in the class and then fighting traffic for an hour to get home. Pain was worse last night than in a long time. I just don't know if committing to driving somewhere far away to do something that causes me pain is the right move at this juncture.

Also, I am rereading the book that convinced me I was going to be able to conquer my pain. Upon rereading, I am less sure, less encouraged. Fears about needing spinal fusion and being disabled are creeping in again.

And sleep, oh my fucking god, why can't I sleep? Even with Ambien and Valium, I am not sleeping peacefully through the night. I can't sleep in the same room with my husband. I'm waking in the night and having to fight back anxiety to try and return to sleep. I'm having the kinds of nights that only add to the cycle of anxiety and depression. I'm starting to wonder if I should have agreed to take the mood stabilizer. But a big part of me still thinks less drugs, not more, are the answer.

I am so very confused. But I also see that, only two weeks ago, things were so much better. So I'm going to try and weather this passing storm without too much angst about what it all means. Despite all of this, I am so very blessed.

 

The new new new plan

DISCLAIMER: Writing in this space is a comfort to me at a time when I really need it. But lately I have been holding myself back from writing here because I wouldn't want anyone who might be reading to think that I believe they should care about every detail of my little back saga. The fact is, I don't really believe anyone reads this, so what I write here is solely for the purpose of helping me work through things. It is not for informing the world. So, in case anyone is reading, I am not so deluded that I think this is important enough for the world to care about.

Today is the day I need to turn over a new leaf. It's time to move out of crisis mode and back into regular life mode. It's time to start doing my best with what I've got. Time to buckle down and do my work, to start cleaning the house again, to start figuring out dinners and thinking about things other than my stupid fucking back. It's time, it's time, it's time.

I went for my third opinion today. This surgeon was by far my favorite of the bunch. He didn't tell me anything I hadn't heard before. He said that I might need a spinal fusion. But he said it's also possible that the problems I'm experiencing will get better given a few months time. He said that, if at all possible, I should give it that time and see what happens. Considering how up and down my symptoms are, that's the only course of action that makes sense. I mean, this past weekend I went sailing and took a 4 mile bike ride. Things are a long way from perfect, but they are not at a level where I should be rushing into a major surgery.

But if I'm going to take this rational approach, I need to figure out a way to not go crazy, to not let my mood ride on every single fluctuation of pain, to let some things other than my back into my brain. I'm not sure yet how well I can do that, but I'm going to make an effort. Here is how I intend to do that.

• First and foremost, bring acceptance to this situation. My perfect recovery from back surgery is off. That dream is dead. I didn't have a perfect outcome. This ordeal of pain and disability is going to go on a lot longer than I had planned. It's not what I wanted, but what I want has nothing to do with it. This is what's happening, and I must accept it.
• Stop making my back the focus of my life. I don't have a choice about the pain I feel, but I can choose whether to allow it to consume me. I'm going to try to stop talking and thinking about my back all the time.
• Do as many of my normal activities as possible. Sometimes, if I'm really hurting, I need to lie down. But, for the most part, I'm going to try to do my normal activities. I'm going to run errands, clean up my house, cook meals, do whatever exercise I am able to. This isn't coming naturally to me right now, especially when I am around the house by myself during the day, so I think I will make myself a daily schedule.
• Keep trying to heal myself, and have faith and hope that things will get better. The only way I can implement any of the other parts of this plan is with the understanding that this is not a surrender. This does not mean I am giving up on my back getting better. It doesn't mean I'm resigning myself to a life of constant pain and disability. It only means I am giving my body some time to heal itself and, if it can't, I will do whatever it takes to help it along.

Hope is my enemy

Let's talk about something other than my back today ... Ha! Just kidding! My back occupies 99% of my brain space right now. The other 1% allows me to do the basic tasks required for survival, but that's about it.

So, here we are. It has been four weeks since my back officially went bad again. For the past week, the sciatica has been better. And a few days ago, after I discovered that Ambien can cause muscle pain and began tapering off it, the upper back pain improved. So I started to feel that most dangerous of emotions: hope. Hope that maybe things would improve on their own, and this whole reherniation scare would turn out to have been overblown. I that my decision to wait on surgery would mean avoiding surgery altogether. I was starting to move, ever so tentatively, into recovery mode. I was trying to focus on other things. I was feeling positive about the future. Yesterday, I was even testing out the smallest bit of exercise, thinking maybe I'd be hiking this summer after all.

And then today I woke up and the sciatica was worse, and my hope was crushed again. Jesus, I can't live like this. I keep trying to tell myself to lighten up, that it could be worse, that this isn't the end of the world. And all those things are true. But the reality is, this situation fucking sucks. To not be able to rely on my body in any meaningful way. To not be able to do basic things: take a bike ride with my family, chaperone my daughter's field trip, plant flowers in my yard. To be facing a decision about whether to have a second (risky) back surgery in less than six months. And to have things vacillating wildly from day to day, yo-yoing me between hope and despair. It just plain sucks.

So here is the new, new plan. Tomorrow, one more steroid injection. Give it some time to see if it helps. Next week, a third opinion from another surgeon. Guess I have to wait to see what he says before I get any further into the plan. But I think that if the sciatic pain continues at this level or gets worse, I will schedule some kind of surgery. God, please let this nightmare be over soon.

This is not easy

Wow, this week has been so so hard. I have been so anxious, so sad, so self-absorbed and desperate. I told myself if I felt this way at the end of the week, I would go ahead and sign up for the surgery. But maybe part of the reason I feel this way is because I don't think surgery is an option right now. You see, the sciatica is feeling better.  For the past few days it has been more of an annoyance than a severly disabling problem. That's not to say it won't get worse, but for now, it's not even close to warranting a surgical invervention. I should be happy about that, right?

But here's the problem: I'm still in a lot of pain. The muscles in the right side of my back, from my shoulder blade almost to my waist, are absolutely screaming at me. This problem does not make me unable to walk, the way my sciatic pain did. It just makes me miserable. For the most part, every minute I am up and around is a minute that I wish I were lying on a heating pad. I went to acupuncture twice this week, and it felt so good when she rubbed and stuck needles in my sore spots. But the relief didn't last, and she told me today that if it didn't help, there wasn't anything else she could do. I am absolutely filled with panic that now I have a new pain that there is no easy fix for. I feel emptied out, isolated, crippled by fear.

I need to tell myself a different story about my body. I need to tell myself it's good news that my sciatica is improving. I need to tell myself that this other pain will improve too. Nothing stays the same forever. It may take a little time. It may try my patience and my sanity, but it will get better. I need to tell myself that I won't let this pain rule me, that I will keep living my life despite it. I need to tell myself that this pain has something to teach me. But it seems I am stuck in just wanting it to go away. I am stuck in wishing for the life in which I didn't have to push through pain and discomfort just to do the basic tasks of life. I'm going to try telling myself that new story over and over. It's all I can think of to do.

Day One: Oh God

Well, the first day of my new plan is drawing toward evening and ... shit. Well, I did some of the things I aspired to. I meditated, went to the pool, did my PT exercises, made an accupuncture appointment for tomorrow, did a little bit of work (emphasis on the little bit). But I also googled stuff, read horror stories, cried and panicked, and had about an hour where I was saying in my head, "I don't want to live through this. I would rather die."

But I did get myself together. And do you know how? By praying, praying to God. I asked the God I don't believe in, the God I have openly scoffed at, to help me. And you know what? It fucking helped. Either that or the valium I took. I read last night in a book about Buddhism that the Buddha said that the only point of religion is as a tool to relieve your own suffering. So you can just take whatever parts of religion make you feel better and use them however the hell you want. So today I prayed to God. How true it is that, the more you learn, the more you learn to be humble and recognize how little you actually know.

Anyhow ... do you know what the problem is, the real problem that is causing me so much agony? My back doesn't hurt enough. And it hurts in the wrong places. The last time, I had the absolute classic symptoms of a herniated disc--and, while I did have ups and downs, in general I felt like I had a lightning bolt of nerve pain running down my right leg. I was a textbook case, and therefore a good candidate for surgery. This time, things are weird and complicated. My leg, which was my chief problem last time, hurts some days and not others--and never as bad as it did before. I also have pain in my abdomen, which is just strange. And then I have these awful spasming muscles in my upper back, which many days--like today--cause the majority of my suffering. And nobody really knows if surgery would help that problem. The muscle pain is certainly not a reason, on its own, to have surgery.

So, I need more pain--and pain in the right places--to bring me clarity. Today, with my leg pain at a very low level but my upper back in spasm, I was left with the feeling that I'm just stuck. I have chronic pain that makes my life miserable, but it's pain that there is no clear solution for. And then there was the guy on google who had debilitating muscular pain in his upper back for 10 years and is taking daily doses of oxycontin just to survive. And then there were the inevitable thoughts about my future of neverending pain and disability and horror.

Oh God, please help me to stop my mind from running in these crazy circles. Please help me to tell myself a different story. Please help me to keep my promise of cultivating faith and optimism. Please help me to stop googling. Please help me to carry out my intention of just allowing this week to unfold, rather than trying every second to figure out what the future holds. God, please give me the strength to be right here, right now.

 

One week

I have decided to take this week, to steal it out of time. I'm going to let this be my week of forgetting about the future, forgetting about the vacations we have planned and the things that I may or may not be able to do. This is my week of giving up hope--hope that I can avoid surgery, or that surgery will fix me, or that anything specific will happen with my back--and just assessing how I feel each moment. This is going to be my week of sitting with myself, putting everything else aside, and trying to make the best decision for my health and my future. I hope that by the end of it, a decision of some sort will begin bubbling to the surface.

Here are some things I plan to do during this week:

• Meditate! This is where my inner wisdom can emerge.
• Go to the accupuncturist. I want to have some sense of whether this might help the spasming muscles in my back. Plus, I somehow feel that it will help to bring me an answer. I'm not sre why.
• Exercise. I'm going to keep up my PT stretches and exercise in whatever way I can, which is probably only walking in the pool right now. But if I have this surgery, I don't want to look back and think that I gave up too soon on helping myself.
• Write. Writing has always helped me clarify my thoughts, so I'm going to try and write here every day, as long as it feels right.
• Read. Books that make me feel calmer or help me see that I am not alone in my struggles.
• Cultivate acceptance. I have to accept that my storyline of a glorious spring recovery is not happening. Things are not going according to plan, and being hell-bent on trying to mold things to my plan could lead to a bad decision.
• Cultivate faith. I'm going to be OK. I'm going to find my way through this very difficult time. I have a lot more life to live, and I am not always going to be defined by my back pain. I have made it through a lot of other struggles that felt insurmountable at the time. This is just another part of the path, and it will pass.
• Try to get on with it. Try to do my work and live my life and go about my normal activities. If I lie on the couch all week avoiding pain, I won't get to know my pain or be able to decide if I can live with it.

This plan feels bearable. I'm not asking myself to hang out indefinitely. I'm just asking for one week and, at the end of it, I can decide to have surgery if that's what I feel like I need to do for my sanity and my health. One week. Here we go.

Agonizing

Almost all the big choices in my life have felt intuitive or inevitable. I am not used to wrestling with things this way. But right now, I am really learning the meaning of the word "agonizing." Making this decision about what to do with this screwed up back of mine truly is agony. So I'm going to try and write it all down--and see if that brings me any sort of clarity.

So, the plan as of just a few days ago, was to give the back 6-8 weeks and see what happened. Give nature a little time to run its course, see if maybe things would improve on their own. Backs are mysterious things, and you just never know. If it was still terrible at the end of that period, I would schedule surgery. This seemed like a very rational plan. No one could argue with it. It was entirely reasonable. I decided that my surgeon was being overly aggressive, maybe even unethical, recommending major surgery only a week after the onset of new pain. I decided that I couldn't trust him. I read all the bad stories about spinal fusion, and all the inspiring tales of people who healed themselves without surgery, and I felt I was making a good choice. It would be crazy rush into spinal fusion because I was overly emotional or didn't want to miss my summer vacation (which will definitely be missed if I end up having this surgery in 6-8 weeks).

The problem is, most days, I don't feel like I can survive this plan. My gut tells me that this back is not getting better, and that I am merely stuck in limbo, watching more and more of my life slip away. Every day, I find myself clawing at crumbling ground, trying to keep from falling back into that awful black hole of depression. The idea of lying around disabled for another two months, and then likely ending up having the surgery anyway, makes me feel like I want to die. With the exception of a couple days, I have felt like sobbing pretty much all the time. I have not wanted to eat. I have been unable to concentrate on work--or on anything. I have alienated my husband and tried the patience of friends and family. I tried to tell myself that, during this waiting period, I would just suck up the pain and go on with my usual activities, and I've been able to do that to some extent. But, as I do those things, I feel awful, miserable, full of panic, barely able to hold it together.

I was feeling that way all weekend, and in desperation, I called a family member who I trust. I asked her what I should do, and she said, "Just go ahead and have the surgery." When she said those words, I felt the first relief I had all weekend. I can't go on like this, my inner voice told me. I have to do something. I have to take this risk to heal myself. And it is a risk. There are lots of people who have had this surgery and gone on to good and happy lives. I've talked to several of them. But there are a lot of people who have had fusion and not gotten relief from their pain, or who have developed other problems as a result. There is absolutely no guarantee that I will not be among that group. I have already ended up on the wrong side of the odds with my back, so I know it is possible. It's also possible that it will resolve some, but not all, of my pain. What if I do this surgery and end up permanently disabled and in chronic pain? What if, what if, what if?

These are the worries that stop me in my tracks, these worries about the unknown future. But where am I now? Right now I am in a place that feels untenable. Do I need to simply sit in that place and hope that an answer will eventually become more clear? Or do I need to make a bold leap based on the hope for something better than this miserable existence? I don't know. God, I just don't know.

 

Optimism: We could use a dash of that around here

I realize that maybe what I need is a little more simple than I'm leading myself to believe. Yes, I'd like to have faith that I can handle even the greatest hardship. I'd like to believe I could be like the guy in "Life is Beautiful," who made the Holocaust into a fun game for his kid even as he was being sent to the gas chamber. But maybe that's aiming a little too high for a person who is currently sitting on her sunny front porch drinking a beer? Maybe I'm not ready to buck up and face a life of unremittant disabling pain.

Maybe what I need is the simple belief that the worst is unlikely to happen. Maybe I just need to take a few shots of optimism and say: Dammit, you're going to be OK. Then I need to just give myself a break and believe it. Maybe my story doesn't have to be chronic pain and doom and destruction and existential angst. Maybe it can be: I had a big herniated disc, I got it fixed and felt better. Now, I am having another problem with a (smaller) herniated disc. I'm going to try conservative treatments and, if they don't work well enough, make an informed decision about another surgery. In the mean time, I'm going to do the best I can and accept that there are some things I can't do right now. But I'm going to be OK. I'm already better than I was the last time, and the body has an amazing capacity for healing.

I am going to be OK. Those are the simple words I need to say to myself every time my mind goes crazy with the possibilities. I need to take it like Mia did, when I told her this afternoon that my back was hurting again. I had been so afraid of telling her, had cried 18 times just thinking about telling her. I finally just said, "My back is hurting again and I'm trying to get it fixed." She looked worried for a minute and said, "Not surgery again!" And I simply said, "I hope I won't need surgery. I'm going to doctors and trying to get it fixed without that. But if I do, I'll be fine. Remember how I got better the last time?" And she said, "OK," and went on doing her homework. She was happy and didn't say a word about it the rest of the afternoon. And she gave me the strength to ignore the damned pain in my back and enjoy the time with my happy child. Because she believed that I was going to be OK.

I'm going to start believing it too. Starting now.

Faith

Faith. I realize that is what I need to cultivate right now. Because when there is no safety net, that is all you have to fall back on. Your faith that you can persevere, that you are safe in some fundamental way, that things will unfold as they should, that all things arise and pass away.

Trust me when I say that's not the kind of comfort I want right now. I want a doctor to tell me I can be fixed immediately. I want the medical literature and statistics to tell me the perfect treatment. I want a 10-point plan with deadlines and promises and notarized signatures. But those things don't exist. One doctor told me he could fuse my spine and fix me immediately. Others say that is a risky and very final procedure, and that it is extremely premature. So I find myself back in this place of being in pain, of not being sure what I will be able to do from day to day, and of not knowing what, if anything, will make me better. I am going from doctor to doctor, website to website, hoping that one of them will tell me the right answer. Instead, I discover more and more, there is no magic cure. There is only trial and error.

So I find myself grasping for the "peace that passeth all understanding," because that is the only peace I'm going to find right now. I understand a whole lot of back problems right now, and that understanding does not bring me one bit of peace. Instead, it leaves me fighting all day to keep from crying and panicking, unable to concentrate on work or a book or a TV show, unable to enjoy anything about my life. It leaves me sad and desperate and lost.

Last night, a voice within me said, "Rest in not knowing." I knew it was a voice of wisdom. I have to accept that I don't know what's best, I don't know the solution, I don't know how I will make it through this or what my future holds. I know that doesn't sound like much to rest in, but I just have to be with the not knowing. And really, that's what faith is. It's grasping that this is all too big for us to understand, acknowledging the mystery, allowing for hope against the odds and trusting that, no matter what way things go, we will find a way forward. I don't feel that trust or that faith yet, but I have to keep trying for it. Because it is all I have to fall back on.

Acceptance

What I have to accept:

• That this is happening. That wanting it to be otherwise has nothing to do with it.
• That I don't know how to fix it yet, and I may have to live with that for the next little while.
• That I don't know what's going to happen in the future, and I have to find a way to rest in not knowing.
• That I will eventually discover my path, and that it is the only path that ever has existed or ever will. My life will unfold as it is supposed to.