Pity party

Carl had his total knee replacement 3 weeks ago. He walked into the physical therapy clinic accompanied by his wife, and with his cane in hand. Carl told his therapist that he was working on the backhoe over the weekend and helped out a bit with building fence. His wife wanted to know if it was really okay for Carl to be riding the stationary bike. No one had questions about Carl using the backhoe while on drugs ( I assume he's still on drugs if his wife is driving him to the therapy clinic).

I decide that as cute as Carl is with his wife and their matching outfits, that I don't like him.

Carl's outcome is what I expected from my own surgery. I'm young and driven. I planned on being released for work four weeks after my surgery. Instead I am still fighting to maintain the 70 degrees flexion that I've managed to gain. Carl had 90 degrees before he left the hospital. I had none. Somehow I failed before I even came home from the hospital.

It's looking more and more like I will have to go back for the manipulation under anesthesia. At this point I am both resigned and terrified. I don't want more pain. The pain I'm already in is more than I can handle with much grace or dignity some days. The idea of inflicting more pain is defeating. Worse, the idea of dealing with the nurses in the St. Luke's system is frightening. I simply don't want to do it. I would stomp my foot in defiance but I can't lift my leg to do so.

I don't know what to do. I do the exercises to the best of my abilities, but I know I'm failing. I work on the physical therapy exercises throughout the day and I work on the stationary bike two or more times a day to try and force my knee to bend. I go to physical therapy three times a week. And I'm still not progressing.

More and more often I want to accept that I've ruined my life and then go back to work where at least I am capable of doing something. I sit at home with my ice machine, needy and incapable of running my home. Maybe at work I could focus on something other than the fact that no matter how much I sweat, no matter how much I cry and no matter how much I bleed I am able to do something.

Blood, sweat and tears. That reminds me on Friday I split open a small part of my incision while at physical therapy. At nearly six weeks post-op, I shouldn't have that to worry about. I've been careful to follow all of the directions in caring for my knee replacement and the incision, but that didn't stop it from splitting.

Also on Friday, my leg stopped working altogether. It wouldn't bear weight. I was on my first outing with a friend and my leg simply stopped supporting me and stopped moving properly. Over the weekend, it remained swollen and difficult to move. Even now, four days later, my leg is swollen clear from above my knee to my foot.

So here I am, defeated by a knee replacement that was supposed to make my life better.

Progress report, Day 36

I've waited a while to post this because I needed time to deal with the information. I had my follow-up appointment on May 9. It was disappointing.

Because my pain and swelling wasn't well controlled, I haven't reached the flexion that I need in order to be released back to work. Instead I've been sent to intensive outpatient physical therapy in order to try and reach the 90-110 degree flexion. This means that I'm at physical therapy three times a week often for over an hour, and I'm working very hard at home on the exercises that build strength and flexion.

This shouldn't have happened. I complained to the doctor's office that my pain wasn't well controlled. The home health nurse and the home health physical therapist complained to the doctor's office that my pain wasn't well controlled. For some reason the doctor's office kept reducing my pain medication instead of finding an option that would help me. There wasn't a day that I didn't begin or end in tears from the pain of this knee replacement. For weeks I've been in agony. I was told that the pain would be less than I was experiencing before the surgery. Unfortunately this isn't true for me and I'm in so much more pain than before.

While the doctor agreed that this situation was bullshit (his word), I can't help but wonder why his nurses were allowed to continually reduce medication when the home health nurses, therapists, and I all called to report that I was suffering.

Its hard to remain confident in my doctor when I've been allowed to suffer so much for so long without reason. Even though he did give me a new medication with the instructions to take it right before physical therapy and when I exercise.

If I don't reach the 90-110 degree flexion by May 30, I'll be sent for a manipulation under anesthesia. this is where the doctor will put me under and then manipulate the leg until the scar tissue is stretched and broken and the leg can bend. The dangers include a broken leg.

This lack of progress is incredibly disappointing. The work that I've put into this knee through the years so far has contributed nothing to my recovery. I work to the point of nauseating agony every day only to be told its not enough. So far I've only achieved 70 degrees flexion.

Time is running out and I'm not sure how confident I am in my doctor if I do have to have a manipulation under anesthesia.

Sweetness

Through all of the struggling with this knee replacement I have to point out that I've had amazing support from my husband.

There is sweetness as he helps me get to bed at night, setting up my ice cooler, helping me place my leg on the pile of pillows, making sure my cup is full of cold water, tucking in the tea towels and iceman pad on my knee, arranging my blankets in that particular way that I need in order to sleep, and setting up quiet music on a timer so I can fall asleep. He then waits another hour after I go to bed to make sure I'm asleep before he comes to bed.  Or he sleeps on the sofa when he's worried about causing me more pain or waking me.

In the middle of his night his alarm rings and he gets up to give me my 3 a.m. medication. On weekdays he'll get up again at 6 to get our oldest out the door for school.  Then his alarm goes off again at 9 to get me up for my morning medication. He makes sure that I'm taken care of and helps with those little things that make getting ready for the day so much easier. If I had to wander around the bedroom trying to figure out which teeshirt I wanted, I'd waste a lot of energy. He makes sure that throughout the day I have my medication and anything else I need.

In addition to all of this personal care, he makes sure the family runs as it should. He lines out the kids with their chores and schoolwork, and makes sure they get it done. He keeps the house clean, the family under control, plans meals and does the shopping.

He makes sure that he spends time with each kid here and there, and checks in on everyone to keep track of how they are doing.

In all of this taking care of us, he works from home, occasionally going to the office in order to take care of business. He's trying to plan for the next months in the field while taking care of everything else.

He makes it all look effortless. I know he's tired, and often worn out by taking care of me and doing all of the work that we'd usually split up. But he doesn't complain. He simply moves to his next task and takes care of whatever needs to be taken care of.

Having a husband who makes sure that I don't have to worry about anything is a blessing.

Day 22

I'll be honest, I really want to write an upbeat progress report. But I can't. It's why I've put off blogging the past few days.

Over the last 22 days I've really struggled with pain control and with gaining flexibility in the new knee. Its been just over the past two days that I've started to see an improvement in the pain control, but the improvement may be too late for the flexibility in the knee.

I do feel like the stiffness and pain I have now is equivalent to the months following my injury in 2015. I'm choosing to see that as an improvement. I've been here before, I know I can live from this point on, whether or not its a great quality of life. Its not what I hoped for, but it may be what I get out of this.

The physical therapist is worried that since I did not get to the 90 degree flexion by two weeks that I won't get there and I'll end up with more problems than I had going into the surgery. Because I didn't meet that milestone, he fears I'll need additional surgery to break up the scar tissue that has formed.

In addition to this, I am walking better with a walking stick and weaning off the walker. I still use the walker when my knee is super sore or when I might be unsteady (waking up or after exercises). This too was supposed to be a milestone that was met at the end of week two.

So there we have it. Its not the best of progress reports, but its where I'm at.

Day 13 post-op

Its been 13 days since I had my total knee replacement surgery. Here is how this is working out:

On April 10 I reported to the hospital at 7 a.m., which is too early for a person like me. I went into surgery around 10:15 and I don't know when I got out.

Surgery was a little different than I expected. In the past, for the arthroscopic procedures, I was put under with general anesthesia. With the knee replacement I was given a nerve block in my left thigh followed by a sedative. Once in the operating room I was given a spinal. Considering that I refused the spinal when I gave birth, that was a new experience for me. I wasn't prepared for the side effects of the spinal or how long they would last.

From what Dan said, the surgery went fine. The doctor did have to change the size of the prosthetics in the middle of the surgery. I'm wondering if the extra steps involved in changing that has contributed to my pain. If you've watched any videos of total knee replacement surgery then you know its pretty violent. If extra work had to be done, I can't imagine it made it any less painful.

As promised, it wasn't long after I was in a room before I was up and using the restroom. Here's where that spinal was annoying. It affected how I used the restroom for quite a while post surgery. Having to think about which muscles I needed and how much time I needed to plan in order to get to the restroom threw me off.

I only spent one night in the hospital and it was a rough one. I was pretty miserable with pain that wasn't well-controlled, nurses not listening when I asked to use the restroom and my regular medications being messed up. When the doctor offered to get me out of the hospital the day after surgery, I wasn't going to say no unless Dan had reservations. The hospital sent me home with plans for a St. Luke's home health nurse and physical therapist to visit.

It is a lot easier for me at home with my own corp of helpers. I think Dan has lost the most sleep since he's the one taking care of everything from getting me up and around, running errands, medication timing, keeping my ice machine running, making sure that the family is taken care of -- plus all of the regular household and homeschooling oversight.

The hospital expects you to have another adult with you at all times during the first two weeks after surgery but its nearly impossible unless you have extra support for that adult too. The second day home, Dan had to call a friend to babysit me while he took Becky to a doctor's appointment. For the most part, he's relied on our kids to make sure I'm ok when he needs to leave the house.

Physical therapy has been the hardest part of the general recovery. I have good days when I feel like I'm making real progress, but then I have days where I'm absolutely miserable. I've gotten to 70 degree flexion so far, but the aftermath of pushing that hard is pretty discouraging.

As for pain management, we strictly followed the doctor's orders which has gotten us into a weird position. The doctor told us to make sure I was taking two pain pills every four hours for the first week after leaving the hospital. When Dan told the surgeon's office triage nurse that we'd run out on a Sunday and asked for a prescription he could drop off and have filled on that Sunday, she told him that I wasn't supposed to be taking the two pain pills that frequently, and that the doctor didn't prescribe them that way (the prescription bottle said what the doctor told us, not what the nurse said). Later, when I called to ask the office triage nurse if I could add acetaminophen to the now reduced Norco prescription in order to get a better grip on the pain, I was told that she'd have to talk to the doctor. When the doctor's actual nurse called me back she seemed to think I had been asking for a higher dose of Norco instead of a higher dose of Tylenol. She was surprised when I explained that with the lower dose of Norco I wanted to add more Tylenol in order to get a better handle on the pain, and that I had never said I wanted more of the narcotics.

Looking forward to the rest of this week: I have physical therapy Tuesday and Thursday. Wednesday, I will have the home health nurse here to remove my giant band-aid, staples and sutures. The hope is that with the removal of the staples and band-aid, I'll be able to gain more function in my new knee.

Day 1,010

Everything hinges on this surgery.

I'm not ready. With my husband having work trips scattered over the last six weeks, we didn't get everything done. The groceries are still not bought, the house not clean, the kids aren't ready. The equipment we should have bought haven't been made. I don't know what to do.

People say they feel everything is going to be just fine, but they aren't on this side of the situation. They don't hear the frustration of my younger children who always have to try so hard and do so much, vent about the oldest taking advantage of them. The people who think everything is going to be ok, don't worry that I won't get to come home if my house isn't ready. We're back to platitudes that offer nothing but thoughts and prayers.

So I sit here knowing that my family is just not ready for this.

This morning's first text was asking for accountability on why the newspaper was wrong. It was an oversight of many people, but I should have caught the problem. If I had been the first, second, third or fourth person to see the problem, I would have caught it. But I trusted someone who said she had it under control. People don't see the multitude of little things that just get done, because I do them.

So I sit here knowing that my work is just not ready for this.

Everything hinges on this surgery.

I'm not ready. I can't imagine a future where I continue to exist only in a very small circle, disabled and miserable. I don't want to consider not being able to enjoy my life. I imagine that I'll be back to walking my dogs, fishing with my kids and riding my bike. I imagine a life where I'll once again enjoy cooking in my kitchen. I imagine a life of standing in the back yard watching the stars in the middle of the night with my husband.

There is so much at stake.

Its easy for those who say "just ask if you need help," because they don't have to commit to helping. Because overwhelmed people never know how to ask for help. Because people who are scared and anxious can't even find the words to say everything is falling apart and we haven't even gotten to the hard part yet.

Getting ready and seeking peace

We aren't ready for this. And still to this day, with less than two weeks to go, I am waffling. But for every day where I have medium pain there are days where I have serious pain. The medium pain I can live with until it becomes serious again. Its then that I know I'm making the right decision.

That's the crazy part of chronic pain, it's always there, but it's not always the same. This is also one of the hardest parts of explaining that today is OK, but yesterday I had to stop myself from screaming in agony with every step I took.

So we get ready. We've bought things we think we need, and we've bought things we know we need. In the end they may or may not work out.

I barely waver on the spiritual peace in the decision to have this major joint replaced while I'm young and the kids are young. When doubts arise on the big questions with this, I'm at peace.

It's the everyday stuff that I'm seeking peace with. There is a definite goal in my head to create a peaceful, quiet background to come home from the hospital to. Clutter and chaos have always bothered me, but now I feel the anxiety of it even more as I get closer to a time when my house will need to be sterile but comfortable. My level of comfort with clutter is significantly less than the rest of the family. This is where I can't find the peace I'm desperately seeking.

How do you explain to children that don't see the mess that the mess is too much? I'm exhausted from morning to midnight with living, and I can't find it in me to clean up once again. I don't know how to get them to see that they need to care that the house isn't good enough. It's stressful and it worries me.

So with a little more than a week before I change my life in one way or another, I am still struggling to figure everything out.

'Life is pain...

Anyone who tells you any different is selling something."

Right now, life is pain. I'm struggling to keep up with everything as we get closer to the day I go into surgery. And while there is mental anguish that comes with making a decision to have a major surgery that promises to be painful and have a long recovery; right now I'm struggling with the physical pain of trying to offset my injury-induced scoliosis. My back from top to bottom is bruised from physical therapy and the 45 minutes of stretching and manipulation I endured today.

The therapist is trying to reduce the muscles that have spasmed and knotted into tender, fist-size bumps on my back. These muscles have pulled my spine to the left and have to be fixed before my surgery. She uses tools to press into the muscles to smooth them out as much as possible. I come out of each session in more pain than I went in. The goal is to go into surgery without these muscles spasmed into giant knots. The goal is to come out of surgery ready to relearn how to walk, stand and live.

This is the pain -- these days of pedaling an exercise bicycle, the physical therapy exercises, the recovery from each session, the building up so I don't waste this opportunity. I would rather skip all of it. But I know better. I know that there is a possibility that I won't have all of this pain forever. There is a chance that my life won't be pain.

When I was stronger

Sometimes memories start with "when I was younger..." but most of the time for me, they start with "when I was stronger..."

When I was stronger I used to rearrange the bedroom on a whim, even though the logs for the king size log bed weigh 200 - 300 pounds each. I would move them, swearing and struggling and then reassemble the bed where I wanted it. If I decided I didn't like it, I would take it apart and move it somewhere else. I did this often to clean under the bed, or because I wanted to surprise my husband when he got home from a work trip.

When I was stronger I had no problem wearing a toddler in a backpack, a baby in a front pack and pulling a preschooler on a sled while I snowshoe'd down the lane. Staying inside seemed impractical even if we had four feet of snow when we lived at the base of the Ruby Mountains in Nevada.

When I was stronger I would take the kids for a hike and end up rotating through each kid with piggyback rides when they wore out long before I was ready to call it a day. It was worth it to show them the next horizon.

It never occurred to me that I wouldn't always be strong and capable. The past few years have humbled me in ways I never knew I was proud. I'll never be as young as I used to be. I can't turn back the hands of time.

But now, I listen to my son who has taken an interest in the things I've always loved. I want him to explore the world and learn about the peace and life that exists in the deserts, forests and plains around us. I want to take him fishing and camping and to learn to laugh at the very misery that makes a bad trip into a good story.

As a kid I roamed the woods and fields. I spent countless time fishing the Clearwater River system and later the streams and lakes of Eastern Oregon, North Idaho and Northeast Nevada. I spent countless miles on my bike exploring country roads. When I was stronger, I had a world to explore.

Sometimes he says, "When your knee is stronger..."

"When your knee is stronger can we go camping more?"

"When your knee is stronger, can you teach me how to fly-fish?"

"Mom, when your knee is stronger, will you ride bikes with me?"

When I am stronger, I will.

This is the wrong fountain

Remember that legend about the conquistadors in their search for eternal life, where if they drank from the wrong fountain, life would be drained away instead of immortality received? Right now I'm in the wrong fountain.

This week, this month, this day is hard. I know a lot of people struggle more in life with no hope. I have the hope that next year at this time things will be different. One more year of pain and recovery to find what's been lost. But right now, at this moment, its hard to keep going. I'm tired, I'm overwhelmed and I'm alone.

It's the few hours of interrupted sleep every night It's the late work nights and the early mornings to get one kid to the bus and the others through their schoolwork. It's the chores. The anxiety that builds when things aren't done everyday becomes overbearing. It's the cooking I don't do because I'm exhausted and know that the effort to cook will drain away more energy than I can spare. It's my relentless nagging and begging my two able-bodied children to help me more then before and so much more than other kids their age. Its trying to be a good parent, a good wife, a good employee and not fall apart. All of it is hard. And I'm trying to figure out how to survive.

I'm jealous of those who are part of  a support system of people who look out for one another. We had a support system like that years ago before we moved to Idaho. The kind of people who would offer to help when they saw a need. It was nice to be part of a community that looked out for each other. We've never had the same thing here.

Over the past couple of years I've learned that our superficial friendships here fell apart pretty fast when we became the friends in need. When we became broken and hurt and when we struggled, others didn't want to get involved. Unfortunately, messy broken people aren't fun to be around. People who need help don't have much to offer back. People in distress are self-centered and consumed by their own survival. Its not until they are safe and comforted that they can give back to those around them. And right now, I have nothing to offer anyone because I am consumed with just trying to survive.

It's the bitterness of trying to figure things out and the weariness of the daily struggle that wears me down. I know that its only a matter of weeks before I have to face the same basic problems but while recovering from major joint replacement.

I'm not sure I'm strong enough.

Drink deep from the fountain

It's been one hell of a week.

Tuesday was a unmitigated disaster. The kind of day that you end with five hours in the emergency room. The kind of day that burns and smolders before you can even fathom what is happening. That was Tuesday.

Wednesday was only the slightest of margins better.

Thursday, eh, we got through it.

Friday? Nope. It was definitely worse than Wednesday but not as bad as Tuesday. It's ending with a overcooked, half-frozen microwave meal where the dry chicken has somehow gotten mixed up in the apple dessert.

My husband left Tuesday morning for a trip that is scheduled to last two to three weeks. And after a fretful and irritating day waiting for my morning delivery that finally came at 3:50 p.m., I was late for work. A friend had agreed to take my kids and dogs to 4-H obedience class that evening and I was just finishing up my scramble to catch up to my first deadline when I got the call.  Becky was hurt.

It sounded bad. I dropped what I was doing and bee-lined for the dog training place.

It was bad. Her kneecap wasn't where it belonged. It was very far away from where it belonged.

It was decided that I should take her to the ER in another friend's van. So I did. My traumatized friend brought home Naomi and the dogs. Naomi would take care of the evening with her brother and I would take care of Becky in the ER.

After sedation and reduction of the injury (they drugged her and moved her kneecap back where it belonged), we came home and tucked Becky into my bed.

After three fretful hours of sleep, I got up to send Naomi off to school. The day started in earnest after that.

My friend let me know that my little truck wouldn't start and she couldn't bring it to town. So I spent well into the afternoon setting up Becky's doctor appointment, making phone calls and trying to figure out how to get the little truck home. I finally had help lined up when I set out to fetch the truck. Upon arrival it fired right up and I can only assume it was too cold to start in the morning since its temperamental that way.

Already exhausted, I made it to work.

Thursday, Naomi's sore throat got the better of her. By Friday morning she felt awful. So I let her stay home from school to recuperate.

So on Friday, both my teenagers are out due to illness and injury. My son is struggling with the sheer amount of responsibility. Normally, he only does a little work, a little school, and a lot of goofing around. Now he's doing a lot of chores, a little school and a lot of helping everyone else.

We're four days into a 14 or more day stint with my husband gone.

Changes at work meant that I should have been much more on my game and much better prepared. In fact, if any week deserved my undivided attention, it was this week. I ended Friday struggling to communicate with a person who just doesn't give a damn. I ended Friday frustrated and angry.

I still have one day left in this week, and I don't know if I can redeem any of it.

As someone who is used to having the little things taken care of so I can just focus on working and surviving, I realize I am not well-equipped for the challenges I'm facing. I don't know what to do about it.

This bitterness is not what I was hoping for while I get ready for surgery.

Road full of promise

I face a lot of doubts going into this surgery that is coming up. But the funny thing is that where the past few years there was doubts and darkness that surrounded every decision we made, I feel like there is a ton of promise in this next step. I’m looking forward to it.

At the beginning of my work week I always entertain the thought that perhaps I really am ok. Now that the surgery has been scheduled sometimes I wonder if perhaps I’m being hasty or maybe I’m a bit dramatic. Maybe I’m a huge wimp with no tolerance for pain. But by the time the week closes and I hobble up the steps to the front door, I am reminded that I need a change. I need to have control over a body that shouldn't be tied up in so much pain.

In the meantime, I’m trying to get my life ready. I have, for the most part, embarked on a change of diet so I can be in the best possible health as I prepare for surgery. That’s hard. I like junk food. I like comfort food with noodles and breads and potatoes. I like easy food that I can put together quickly. This isn’t any of that. But it is helping. I feel a little better, and sleep a little better. And it doesn’t hurt to see the number on the scale dropping.

I’m also seeing a physical therapist who is trying to straighten me out after years of my knee warping my skeleton. X-rays show that my lower back curves to the left and my upper back is curving forward. The muscles in my lower back are so tightly wound that any pressure causes spasms. Of course the PT wants to use an array of devices to torture me. But if I want to regain the ability to walk without pain and a walking stick, I need to do it.  So I twist and flail and whine as I do the required exercises. I need to succeed here.

Its time for a new blog

If you follow my blog Adventures in Poverty, this is the natural continuation of that. I'll focus more on the preparation, surgery and recovery of having a total knee replacement at the uncommon age of 42. Most surgeons don't consider this surgery until a person is in their 60s. 

A brief background on this journey: On July 4, 2015 I injured my knee.  I didn’t have health insurance at the time and so I didn’t seek medical help. My knee swelled and hurt intensely until the pain was a part of everything I did. I couldn’t walk without crutches. I couldn’t cook, clean, garden or fish. I couldn’t teach my homeschooled kids. It might have been the darkest summer of my life, and it definitely ushered in the darkest period I can remember. Unemployed, hurting immensely and afraid that we’d lose our home and family, we struggled.

In 2016 I found a job that I could work. It took nine months of searching. In those nine months my family had gone on food stamps and the kids were on Medicaid. In Idaho, they don’t allow adults who make more than $6,000 a year to use Medicaid. We made $6,700 in 2015 – not enough to pay for the house we live in or even the basic utilities. Too much to get the medical help I needed that would have opened up many more doors for employment. Too little to make ends meet.

After I became eligible for health insurance, I went back to the surgeon who had worked on my knee before the injury. We tried arthroscopy, steroid shots, synthetic fluid, physical therapy and wait and see. I walk less than 500 steps a day, each one causing more pain as my bones grind against each other. My back and other knee warp and twist from compensating for my injured knee. The surgeon and I finally reached the agreement that the last action is to replace the injured joint with metal and plastic and hope that I will finally find relief.

I’m not looking for the fountain of youth. I’m looking for the fountain of middle age with this surgery. I hope to gain a life where I’m not miserable going to church, the store, or am unable to walk at the end of a work week.

Welcome to Seeking the fountain of 40.