Depression Marathon Blog

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Diagnosed with depression 17 years ago, I lost the life I once knew, but in the process re-created a better me. I am alive and functional today because of my dog, my treatment team, my sobriety, and my willingness to re-create myself within the confines of this illness. I hate the illness, but I'm grateful for the person I've become and the opportunities I've seized because of it. I hope writing a depression blog will reduce stigma and improve the understanding and treatment of people with mental illness. All original content copyright to me: etta. Enjoy your visit!

Thursday, June 29, 2017

Learning has occurred

It's not very often I find myself glad to be wrong, but this is one of those cases. The pain I wrote about in my last post has gotten better. I followed the instructions of the surgical nurse I spoke with on Friday. I took my pain pill as prescribed for three days, and what do you know? My pain progressively decreased. I'm relieved. I'm glad I was wrong, and better yet, I'm happy to report I even learned something from this experience.

It's always good when learning occurs at my advanced age. (Insert smiley face emoji here.) Like me, my mother was dubious as to the nurse's simple instructions. She couldn't believe that's "all they were going to do." As I tried to calm my mother's concern, I said something aloud which I had never thought about previously. It went something like this, "Well mom, even though this pain is unique to me, it's probably not unique to them. They've probably heard this hundreds, if not thousands of times, and they know from experience my pain will get better if I just do what they recommend." As I said it, I felt a knocking upside my head. Wow, I thought, that was really profound.

The knocking upside my head occurred because I realized I've been in the surgical nurse's shoes hundreds, if not thousands, of times with my own patients. The complaints of my patients, which maybe I dismiss without enough compassion, are unique to them. For example, even though I've seen thousands of total knee replacements, and I know exactly the various pains my patients may experience, my patients don't have that knowledge. I know which of their pains is normal, and I know that pain will improve if they do as I recommend. I see their entire course of recovery, and I know how the story ends. They don't. I need to remember that when I return to work.

I need to remember what I just taught myself. I think I do a pretty good job of empathetically communicating with my patients, but there's always room for improvement. When I return to work I need to be kind, reassure my patients, and be careful not to come off as dismissive. I don't want my patients to feel like I did on Friday. I don't want them to feel dismissed when they express concern over a symptom, unique to them, which I've heard many times before. Reassurance is important. From now on I will do my best to provide more than just instructions. I will work to reassure my patients, too. Whether suffering from pain, illness or depression, isn't that what we all crave?

Saturday, June 24, 2017

Pain

It's been a rough couple of days here. My back appears to be healing, at least in the area of L4 where the surgery was performed, however I now have increased pain a few vertebrae below L4. It is significant pain, too. It hurts just to the left of approximately S1, the uppermost vertebra of the sacrum. It's been difficult to find a comfortable position, and the pain is waking me several times a night. I called my surgeon's office yesterday. The nurse I spoke with assured me it was likely pain related to my surgery and encouraged me to be more consistent with taking my pain medication. I hope she's correct, but I fear she isn't.

I'm pretty sure this pain is not related to my surgery. I think it's part of the original injury but at a different vertebral level. I complained about this pain a few days prior to my surgery, which is when it first presented itself, and was told it was likely referred pain from my L4 injury. I was hopeful they were correct then, too, but I don't think they are. This pain feels different and acts differently.

Despite my concerns, I did as told yesterday. I took my pain pill every four hours as prescribed. It didn't seem to make a difference. Now it's the weekend, and I hurt. I'm doing what I can to relieve the pain and remain as active as possible, within the limits of my post-operative restrictions, of course. I'm taking my pain med regularly, icing my back, walking half a block, and strengthening my left leg as best I can. I really hope this pain subsides, as my surgical team assures me it will, but I remain dubious. I'm already anticipating I'll be on the phone with them first thing Monday morning. I just hope they listen.

Wednesday, June 21, 2017

Recovering

I'm home and recovering from my back surgery. My surgery on Monday went very well. The surgeon was able to remove a larger than expected L4 disc fragment, which had already calcified, without having to cut through the vertebra. So I still have all of my vertebral bone intact. Usually the surgeon needs to cut a small window in the vertebra in order to reach the disc fragment, but my disc fragment had extruded so far laterally, he was able to get at it without having to cut through the bone. I think that's a good thing.

I woke up in the recovery room relieved. I was able to wiggle all my toes. Paralysis, though only a 1% risk, was possible. I was in pain, but the pain was almost all in my back rather than in my left leg, so that was a good thing, too. As I sit here right now, my left leg is pain free and the numbness and tingling I had prior to surgery is almost gone. I'm thrilled.

My strength, too, is returning. My left quads and hip seem to be back to nearly full function. They are less weak than they were prior to surgery. I continue to have foot drop, but I knew the foot drop would likely take several weeks to resolve. I'm hopeful that's the case, and anxious to regain that strength. Foot drop is now the only thing between me and eventually running again.

I have a ton of movement and lifting restrictions for the next 12 weeks. That's going to be tough, but I'm going to do my best to be a good patient. I've already gained 3 pounds, and things that used to be muscular, like my tummy, have gotten soft. As a runner, that's really difficult to deal with. I guess I'll just have to quit looking in the mirror for a few months.

The only exercise I'm allowed right now is taking very short walks multiple times per day. Sounds easy, but so far, it hasn't been. I get really tired and really stiff after walking just half a block. Jet, too, is going a bit nuts. I feel really bad, as there's nothing I can do to relieve his boredom. I can't even take him on my short walks. If he pulled suddenly, I'd be screwed. I guess we're both going to be soft, heavy and stir crazy by the time I heal.

It's going to be a long road, but at least I'm on my way to healing now. I'm moving in the right direction, and there is an end in sight. That's way better than what was happening over the past 4 weeks. I'm grateful for that, and I'm looking forward to eventually getting back to my life. Despite everything, my life is good. And I'm hopeful it will only get better from here.

Thursday, June 15, 2017

Surgery scheduled

The saga of my back will continue for another 12+ weeks. I am scheduled for back surgery on Wednesday, June 21st. Recovery and restrictions after surgery will last at least 12 weeks. The surgery will be a minimally invasive procedure to remove the extruded piece of disc currently displacing my L4 nerve root. There are lots of risks, of course, but they each occur 1% or less of the time, and the chance of never regaining my ankle flexion is high if I don't have the surgery. I can't run with foot drop. There is a chance I will not regain my ankle flexion even with the surgery, but surgery is the best option to make me a runner again. I can't imagine my life without running, so the decision was actually pretty simple.

I'm anxious, of course, about the surgery. I'm trying to keep the negative thoughts at bay. The thoughts of waking up in even more pain or paralyzed are the worst, but I push them aside, as I must, or I wouldn't be able to move. Even with no surgical complications, it will likely be a long time before I find out if I'll be able to run again. It's going to be a long road of re-strengthening what is now a very weak left leg. I've already lost so much.

Thinking about what I've lost, and what could have been saved if my MRI had been read correctly, and if I had been listened to by my inpatient treatment providers; it's of no use to me now. I sent a letter to the radiologist explaining the negative trickle down effect his erroneous reading has had on me and my care. I honestly answered all of the questions on the hospital satisfaction survey I received. I don't expect an apology. I don't need one. I did what I could. Now I have to work on letting go of my resentments. Now I have to face and deal with what I can control in today alone. So that's what I'm trying to do. Let go. Move forward. And pray for the best outcome possible.

UPDATE: Surgery moved up to Monday, June 19th. I'll let you know how it goes.

Sunday, June 11, 2017

Spine Consult

It's hard to believe I've been dealing with this painful back injury for three solid weeks now. I'm beginning my fourth week without work tomorrow. I've been humbled by friends and coworkers who have mowed my lawn and arrived at my door with groceries and gift cards for gas. I'm so grateful for their generosity. I'll have to use my savings to pay the bills for as long as I can, but not having to worry about gas and groceries makes my life incredibly less stressful. At least I can go about my day to day activities without worrying about how much money is in my wallet.

I'm hoping for a quicker resolution to my back injury after seeing a spine specialist on Friday. During her exam there was no denying my pain, left leg weakness, loss of sensation, and loss of reflexes. She referred me to a surgeon. I see him this Wednesday.

Surgery is the likely option now, as my symptoms have continued to worsen. If the surgeon agrees, I'm going to push for surgery before the end of the week. Each passing day brings greater and greater apprehension for me. I can hardly control the worry thoughts. The longer this goes, and the weaker my leg gets, the less likely I am to have a full recovery after surgery.

A full recovery would mean the return of all of my leg strength. At this point it's possible that won't happen, even after they surgically relieve the pressure on my L4 nerve root. If I don't regain my leg strength, I would either not be able to run as I wish, or not be able to run at all. That thought scares me out of my mind. If I had the choice I would rather lose my home than lose the ability to run. A roof over my head can be replaced. The peace, serenity, joy, and drive I get from running can't.

That pretty much says it all. I'm scared, really scared, and anxious to get this thing fixed. I'm dealing with the pain. I'm doing my best to combat the inevitable progression of the weakness. And I'm continuing to attend to my responsibilities as well as I can. I'll let you know how it all goes. And if you're into prayers, I'm take them.

Tuesday, June 6, 2017

Patient advocate

I discovered one thing as a result of my recent back injury. If I didn't advocate, and advocate strongly, for myself, nobody else would have, and my care would suffer. I don't want to get into all the specifics here. I already delineated how inaccurate my hospital discharge summary and MRI reports were in a previous post. Unfortunately, most of my follow-up appointments were preceded by the treatment providers reading those inaccurate reports. I ended up one step in the hole prior to the provider even saying hello. They approached me thinking they already knew my story, and in a few cases actually tried to make my symptoms match what they read rather than looking at me objectively. I felt very fortunate to be a physical therapist, as I knew what the treatment provider should have been looking at. As a result, I had to advocate, and advocate strongly, for myself.

The trick to being my own advocate, I'm learning, is gentle, factual, and very politically correct pressure. I spent the weekend reviewing my available records (thank God for online medical records), and composing written messages to 3 different providers. As a result I got one specialist appointment moved up a week, got some paperwork I needed for my employer completed, and had one procedure considered which was previously deemed unnecessary. Oh, and prior to the weekend, through a series of messages and phone calls, I got my MRI report amended so it now accurately describes my injury. It was an exhausting, tense process, but it was worth it.

I'm relieved. I'm really glad I took the initiative to be my own advocate. I'm glad I have knowledge of the human body and of neurological testing. And I'm grateful I have just enough communication skills to effectively communicate with each provider, presenting my case without offending or angering any of them. (Interestingly, this is exactly the kind of energy and impetus I do not have during a depression relapse.) I feel like my treatment plan is now thorough and heading in the right direction.

As a patient, I rely on my caregivers to be skilled, thorough, and nonjudgmental. I feel for patients who do not have access to some of the knowledge and resources I had during this process. How do they assure effective treatment for themselves? As a healthcare provider, I'm frustrated by the presumptions, incomplete examinations, and mistakes I experienced throughout this process. I understand how some of that happens, but it happened entirely too often during my hospitalization and follow-up appointments. That is disheartening.

I guess the lesson is we all have to be patient advocates. We have to be patient patients yet be unafraid to speak up, gently but decisively, when we feel more needs to be done. If we don't stand up for ourselves, who will? Lesson learned.

Friday, June 2, 2017

Pain is exhausting

I wish I had something more positive to write about today, but unfortunately I'm still in pain. There has been no resolution to my back issues. My left leg remains so weak I am unable to walk without increased pain and a significant limp. I am using crutches for any distance beyond my kitchen to living room. I am on pain medications, which as a sober person makes me quite nervous, but they are necessary for the pain I am experiencing. I continue to have difficulty finding positions which are comfortable, and even if I find one, it only remains comfortable for a short time. Sleep occurs a couple of hours at a time, and I am generally exhausted. Pain, it turns out, is exhausting.

My life has not only been interrupted, it's been entirely halted. I can't work. I can't run. I can hardly get dressed. Movement is painful. Not moving is painful. I'm confined to my home 23 hours a day. I need help with most of my household chores, but so far I've resisted asking. I hate asking for help, but I know I'm eventually going to have to relent. One of my coworkers did mow my lawn a few days ago, which was a relief. I was grateful he offered. Jet is bored and restless, as he also went from running 40 miles per week to zero, but there's not a thing I can do about it. I feel unproductive and useless.

Needless to say, my mood is getting worse and worse. I'm trying hard to stay hopeful, but with each passing day I feel that hope slipping away. I'm certainly worried this issue is going to lead to a depression relapse, but I haven't given up fighting yet. I'm working with my employer to find something I can do to help out, even if just for an hour or two. I'm beginning physical therapy today. And I've walked on the Alter-G (gravity-eliminating) treadmill, at only 40% of my body weight and for only 20-25 minutes, twice in the last several days. It wasn't much, but at least I got to move. I've fought through a lot over the past couple of years. I guess this is just one more battle I have to conquer. I'm scared, anxious and incredulous, but I'm still fighting.



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