A Little Slice of Summer

In my last post I talked about not letting myself be defined by ESRD.  This is a post from my other blog about my weekend.  While it isn't entirely about ESRD, it is a reflection of how the stress from dealing with chronic illness and the life-upheaval it causes can sometimes make us forget how beautiful life can be. 


Yesterday I went on an adventure of sorts up a long winding, rocky mountain trail that tested my strength with every clomp and squeak of my crutches as I pulled myself along.  I followed behind, not even able to keep up with the dogs who were excited and ready to run.  They meandered on and off the path, smelling everything, peeing on anything they liked.  They were too impatient for us humans, two of which, with their strong legs, took everything in stride barely breaking a sweat as they led the way before me.  Once in a while they stopped and patiently waited for me to catch up.  I'm sure they doubted me.  They second guessed our decision to trek down to the river via that particular path but I was determined to make it all the way, even if I had to crawl at some point.

"It's about a quarter of a mile." He said just as we started out.

"Are there hills?  Because hills are what worry me with these crutches." I said.

"No," he assured me, it's not hilly."

After we walked about half a mile uphill we stopped for a second to give my underarms a break from the crutches rubbing against my bare skin.

"It's a little farther than I thought." He admitted.

I rolled my eyes, and sighed heavily.  "So how far is it then?"

"About another quarter of a mile." He grinned.

We started off again.  I tried my best to keep up, but they still, in their wholeness, left me behind. Eventually they got tired of waiting for me, and with the swimming hole ahead, were anxious to dive in.

"Let me carry you," he said.  I protested at first, feeling guilty for being broken, for slowing us down and making even the most pleasant, peaceful of activities more difficult than it needed to be.

Having none of my protests he made me wear his heavy backpack, then slung me over his shoulders like a wounded soldier.  He carried me, my crutches and the backpack as if we weighed hardly anything.  As I hung on tightly we had a light conversation as if two people in such a position making their way
up a mountain path toward the river were perfectly normal.  He carried me a good distance, though once my right leg started to tingle from lack of blood-flow he stopped and set me down on my good leg.  He handed my crutches back to me and I again started my clomp, squeak, clomp back up the trail through rocks and horse poop, weeds and brambles, trying my best to keep up but still falling behind.

My boy walked between us, a yellow bag full of snacks and sodas weighing him down.  He tossed it over one shoulder, then the other, now and then complaining that it was cutting into his skin. I tried to carry it and continue on my crutches but I was scolded for that.

He took the bag from me and carried it for my boy for a few minutes before declaring that he needed to carry me again.  That time he left the backpack on and lifted me over his shoulders  just as before.  The forest became more dense and the wide pathway we started out on had narrowed to a mere foot trail meant to be walked single file, every man for himself.  With the boy trailing behind us, he heaved forward uphill, down hill, through thick brush and slanted ground until finally, a clearing.

"I hope you'll think it was worth this once we get there" He said just before we noticed the river within view. He took me into the clearing and set me down on my good leg again.  We threw our stuff down on a mound of dirt and moss and he stripped down to his ragged cut offs and jumped into the river.  I helped my boy get out of his clothes. In nothing but his underwear he took off without hesitation, which for some reason, took me by surprise.

Before I knew it, the boy was out in the middle of the river, stomping away on the rocks, splashing himself and laughing at the swimming dog.

I made my way down to the riverbank but with only one good leg I felt I could go no further.  The thick, black river mud was ready to swallow my crutches should I try to use them to get to the one rock that was close by.  So I stood there for a while, feeling happy, enjoying the beautiful river, watching them play, but feeling kind of left out as well.

After a few minutes I finally weakened and asked him to help me get onto the rock.  The rock I had in mind was only a couple of steps away, partially covered in mud and so far out of the water I would have only been able to stick a toe in.

He lifted me over his shoulders again and waded out onto the slippery river bed. I protested a little when he started carrying me so far. I was afraid he would slip and fall.  But he was steady and confident, telling me to stop talking as he set me down slow and easy on a large rock.  "Just ease yourself down right here," he commanded.  So that's what I did.

Fully dressed, I sat down on the big rock and slid myself across it to a spot where I could sit and hang my legs over into the cold water.  I let the current flow against my feet as I sucked in a deep gulp of fresh mountain air and let my eyes take in the beauty that surrounded me.  Poised on my rock I could see up-river, where it forked off in different directions. There were rocks lying just below the surface of the water where my boy ran around picking up smaller stones and tossing them into the deeper water.  The dog swam relentlessly, needing an occasional reminder to stop and take a break.

He jumped in again too.  Just jumped right off the rock ledge into water so deep that it swallowed him up. He swam with the dog and tried to get my boy to join him in the deeper water, but my boy isn't always trusting of others.

"This," I thought to myself, "is the sweetest taste of summer I've had in a very long time." And I sat there on that rock, my broken leg dangling in the water, the tube in my belly safely in the dry, for a long time.  I took in the sounds of strange birds chirping around me, the crackling fire by the riverside, the sound of my boy laughing and making up stories as he played.  I felt the breeze blowing down the river, sweeping my sweaty hair back from my face. I brushed my hand across the rocks, felt the familiar slime of the river bottom beneath my toes. I felt the sun baking my skin on one side and shivered as the dog shook beside me, showering my back in cold mountain water.  I breathed in the smell of river mud and campfire smoke and for that brief bit of time, I felt a lot like the old me.

I've been missing the old me lately, grieving her even.  Life sometimes gets so messy that you can lose yourself among its clutter if you aren't careful.  There in the middle of the river I was surrounded by peacefulness. The whisper of leaves blowing in the wind replaced the sound of shuffling papers. Instead of filling out forms and researching options, I sat quietly with myself, trying to figure out a way to keep my Diet Coke from floating away.  Instead of propping my leg on pillows, staring at a TV or computer screen, I propped my feet on the rocks and watched my son play.  The worries of my usual day were so far away from me that even if I had thought of them, I wouldn't have believed them to be true.

I knew it wouldn't last forever, yet even with the difficult trek back to the car on my mind I had no regrets.  I spent my afternoon in the most perfect spot imaginable, although it did take a lot of work for everyone to get there.

Once out of the river we dried ourselves a little by the fire and ate our snacks.  It's funny how the water makes you so hungry.  Then we set out back down the trail to the car.  Again it was work, with me struggling to keep my rhythm on crutches.  I had to let him to carry me for a while here and there, but we made it to the car in what seemed like no time at all.  The evening was settling upon us as the breeze around us cooled and the sun hid behind the canopy of trees above our heads.  We drove with the windows down, not quite ready to close ourselves off from nature completely.  With our bellies growling and our worn out dogs sleeping in the back seat, we made our way back home feeling a little lighter inside than we did before we left.

I guess sometimes all you need is a little slice of summer to remind you that life is really, really good.

You Have ESRD, it Doesn't Have You

Almost all the people I see in the waiting room at my dialysis clinic are at least 20 or more years older than me. In the last year I think I have run into one other young person, younger than me actually, who was just getting started with Peritoneal Dialysis.  The last year, since I started PD has been a huge adjustment period for me and my family. Even though I was diagnosed with IgA Nephropathy when I was in my twenties, I've never been the kind of person who visited a doctor frequently.  Suddenly though, I found myself having to carve out time twice a month to go to the clinic for labs and doctor visits.  I often have to call to reschedule, I sometimes show up late and there have been a few times that I've gotten my appointment dates confused or shown up on the right day at the wrong time.

November 2013--One of my "rescheduled labs" days.

The  nurses at my clinic aren't very happy when I reschedule or flake out on an appointment.  I understand that it makes their lives more chaotic when patients can't just show up when they are scheduled, but it seems as though the expectations put on younger patients aren't always so realistic.  Unlike most of the people who sit in the waiting room with me every month, I have a seven year old kid at home.  I have a part-
time job, two adult daughters who still depend on mom here and there, and I stay fairly busy with other pursuits.  Especially during the summer I like to be outdoors, camping, hiking, swimming...You name it, so with my life so full of living most of the time, I really need the clinic to show me a little flexibility once in a while without scolding me for not prioritizing they way they think I should.

I tend to become a fairly impatient patient when the clinic treats me as if dialysis and clinic visits should be the center of my universe.  I don't have to tell other people who have ESRD that if you're not careful, you'll become this diagnosis instead of being a person who has this diagnosis. You absolutely must hang on to the parts of yourself that you value most.  For me, that means being  a mom before anything else.  It means being able to write, to explore the world around me, to interact with people as much as possible.  Whenever I have gone through rough patches, when I'm too fatigued to function normally, when my iron gets too low, or when I've had bad nights on the machine with painful drains, I have ended up terribly depressed.  I start to feel like a slave to my body, as if it is somehow sabotaging me on purpose.  I start to feel like less of a person and more like a malady.

If I don't focus on who I am and what makes my life feel more complete, I lose track of my identity altogether.  I don't feel feminine or pretty or in any way attractive.  I don't feel like I am good at anything. I feel like I must be a terrible friend who is so consumed with her own problems that she can't be there for the people who matter most to her.  I start to get so down on myself that before long, I am a big bundle of anxiety and depression.  The more negative self-talk I engage in, the more convinced I become that I should just stay away from everyone.  Isolation actually becomes easier than reaching out.  Hiding away, focusing only on my shortcomings becomes a way of life for a while.  Let me tell you, I hate getting into that spot, but once I get there, I find it incredibly hard to dig my way out again.

Quality of life should be the most important goal for us and it should also be a goal that is important to our healthcare providers.  Sure, I could just let my life start to revolve around hooking up to a machine, ordering supplies for dialysis and waiting around for deliveries.  I could keep every single clinic and lab appointment without ever asking for a change, but then I would miss out on a lot of the things that make my life richer and more fulfilling.  This disease robs us of so much already, why let it rob me of time I could be spending seeing my son sing with his class at school?  Why should I miss out on a once-a year camping trip?  Is it really that much trouble to ask for an appointment change here and there just so I can hang on to  the parts of my life that have remained "normal" and reassuring?

I know I'm not the youngest PD patient ever, but I see a pattern with healthcare providers that is troublesome, in that we seem to all get lumped in together as ESRD patients and not individuals.
It is easy to get frustrated when the medical profession has such a general perception of ESRD patients.   Either we are "young and healthy" because we don't look sick, or as is so often the case with our dialysis clinic staff, we are sick people who have nothing else to do but be sick.  The reality is most of us, especially the younger of us, fall somewhere in-between those two constructs.

I am a person with an illness, yet I am young and aside from renal disease, I am reasonably healthy.  Every other physical problem I have exists only because my kidneys don't work.  I realize that isn't the case with everyone, but then everyone is different.  Your disease, your life, your health is a very personal, individual experience.  None of us should ever feel as if we are not living up to the expectations of our nurses or doctors because we aren't being "sick"enough.  We should never feel the need to apologize for having a life and identity that is not defined by ESRD.  These people only know us in context with our disease, but if they took the chance to listen, to understand us, they might realize that there is so much more to our lives than merely surviving to see another day.

I urge you to talk to your dialysis center staff about your life.  Tell them what you do with your spare time, let them know that you have people, responsibilities, hobbies and joys in life that are more important to you than anything else.  Remind them, by being yourself, that you are not your disease.  The only way we can open eyes is through authenticity and openness.  I remind my clinic staff that I am a busy woman.  I tell them about my camping trips and excursions through the woods.  I tell them I go wading in the river, and that I hiked up a mountain.  They are starting to know me well enough now that they are curious about what I've been up to whenever I call to reschedule an appointment.   While they are no less annoyed with me, they've come to understand that I am not slowing down just because I have a diagnosis for which there's no cure.

We only get one chance to live. We should never feel apologetic for giving it our best shot.  By all means, get to your appointments every month, but never feel bad if you need to reschedule for an important reason. Never mind whether it seems important to anyone else.  This is your life, your experience, don't let ESRD take anything away from you that you can still hang onto, and don't let your clinic pressure you into feeling as if you are neglecting your health if you reschedule from time to time.  A healthy person takes care of the physical, mental, spiritual and emotional parts of himself.  The results might not be measurable on your monthly labs, but you will feel the difference, and that's what matters most.

ESRD, The Bottom Line

For the second day in a row I have sat at my computer trying to think up search words that would deliver information about the financial effects ESRD has on its patients and families.  For the second day in
a row I have been unsuccessful at finding any information online about foreclosure rates, job loss or loss of other income and and loss of credit as a result of ESRD.

All of us who are in this struggle understand how much an ESRD diagnosis can devastate a person financially.  Even with Medicare and private insurance, medical expenses can pile up.  Many times families have to choose between paying a medical bill and paying a utility bill.  Medical debt is leaving Americans in dire financial straits like never before.  The number one cause of bankruptcy in our country is medical bills.  So where does that leave all of us who, although we have been good financial stewards all our lives, find ourselves faced with a life-threatening financial obstacle like ESRD?

If you look online to find statistics of or resources for people who have lost their homes, jobs, savings and credit scores you won't find many. Do a Google search of ESRD paired with the words "financial" "economic" or "foreclosure" and you'll get results for ESRD's cost to Medicare, a couple of posts to message boards from ESRD people who are facing foreclosure, articles about economic incentives for healthcare providers and the economic benefits of preventing ESRD.  The system is failing somehow, to notice the financial difficulties that families face as a result of ESRD.

There has to be a starting place where we can all have a voice to raise awareness not only of the physical, mental and emotional effects of this disease on our lives and the lives of our loved-ones, but of the financial devastation it can cause as well.

Many people with ESRD are unable to work or can no longer do the type of work they used to do. Many are unable to continue working full-time. Those who qualify for Social Security Disability tend to exist on a fraction of the income they had when they were able to maintain full-time employment.  There are others, like me, who are receiving SSDI and working part-time as an independant contractor to supplement that income. As able-bodied as I feel these days, finding an employer who will risk hiring someone with such a chronic illness has been pretty much a futile endeavor.

Before I started dialysis last year I had full-time gainful employment with health insurance.  My employer did not know that I had ESRD.  I never felt the need to share that information with them, and had already gone through one experience at another job where I was let-go after they found out I was planning to get a transplant using my company's insurance.  Once I found out that I had a date for surgery to place the PD catheter, I felt I had no choice but to be up-front with my boss about it.  I worked on the day of my surgery which was on a Friday.  I was back at work by the following Tuesday.  I worked through pain and discomfort for weeks, added to the extreme fatigue from the disease itself before starting dialysis, it was quite a battle for me to keep moving forward.  A month later, I was again let-go. My employment record had been spotless.  I had never received any type of warning or write up, but suddenly my job performance was brought into question and I was deemed incompetent for the job.  Not having SSDI in place, I was left to file for Unemployment Compensation. I had to live on about 40% of my regular income for 6 months.  In that time period I applied for hundreds of jobs.  I applied for jobs for which I was overqualified.  I went on interviews and had phone interviews that went splendidly until I shared why I was unemployed.  I could see the disconnect in the eyes of the interviewer when I said the word "dialysis".  I know it's illegal to discriminate against someone because of a disability, but there's no way to prove discrimination in these cases.  Potential employers are never going to admit that they neglected to offer you a job because of your illness. They will always give another, more legitimate sounding reason.

The unemployment checks ran out just before Christmas.  Thank goodness I had found some part-time contract work by then because it was the only thing that got us through the month.  Then in January I started receiving SSDI.  SSDI pays less than unemployment, even with the amount my son gets added in, so my part time work has been a life saver. Still, my mortgage is way past due and is in the final days of foreclosure right now.

It doesn't help that renal osteodystrophy has left my bones weak.  A month ago I had a run in with my dogs that left me with a broken leg. So on top of the challenge of finding employment and a new home, I have a pair of crutches and a wheelchair with which to contend until September when I'm allowed to try to walk again.

I know I can't be the only ESRD patient who is facing these kinds of obstacles, but when I reach out for any kind of support, nothing is there.  Where are all the other people with this disease who are losing their homes and struggling to keep their lives together because of financial set-backs?  Where are the programs that help people like us stay on our feet, aside from just covering the cost of our medical care and insurance premiums?  I'm not discounting the organizations that pay COBRA or Medicare premiums for patients.  Without those programs many of us would never afford treatment.  But let's face it, there's more to life than just staying alive.

We need to be able to provide for ourselves and our families.  We got unlucky enough to get ESRD, but our responsibilities didn't disappear the day we started dialysis.  There are people still depending on many of us. We shouldn't have to give up everything we have just to keep existing.

Where do we start?  If we are ever going to see change we will have to step up and create it.  The first step is to talk about these issues more openly and to share our financial woes and worries with people who understand. An open dialogue about these issues will bring them out into the light of day, exposing another facet of how this disease profoundly changes the lives of those who have it.  With one out of every 10 Americans having chronic kidney disease (CKD) or End Stage Renal Disease, it is time for our country to take notice.  We need the same awareness, support and advocacy that other life-threatening and life-altering diseases get and that activism, education and advocacy will have to start with those of us who have ESRD and the people who love us.

I encourage you to use this blog as a forum for discussing the financial impact ESRD has had on you and your family.  Perhaps by sharing our stories we will be able to also find resources out there that can help meet our needs.

There's a comment link below, use it to share your story or to add your thoughts about this issue.

Stay Positive: Good advice Or Unrealistic Expectation?

Rosa, from OITNB

I like the Netflix show, Orange is the New Black.  I just finished watching the second season in which the story of Rosa, a seasoned prison inmate who is battling terminal cancer is revealed.  You learn that in her youth, Rosa was obsessed with money and the adrenaline rush of robbing banks. The jolt you get when a flashback of Rosa's youthful adventures fades back into
present
time, showing her bald head and aged skin is most unsettling.  One scene in particular that struck me was when the Prison Counselor, Mr. Healy is sitting at his desk explaining to Rosa that the state will not pay for the cancer treatment she needs to stay alive. He follows that up with a speech about the importance of staying positive, and a comparison to someone in his family who seemingly beat cancer with nothing more than a pleasant attitude.  Rosa isn't buying it.  She heard what her doctor said loud and clear, that without that particular treatment, she was a goner.  I identified with her so much in her response to Mr. Healy's well intended pep talk.  She remains outwardly angry, but you can see the grief in her eyes and she accepts her diagnosis and refuses to grapple for the false hope that Healy is dangling in front of her.  He is visibly uncomfortable with Rosa's resignation, as many people in our lives are when we don't jump on the "positive attitude" bandwagon and stay there perpetually.

Of all the pieces of unsolicited advice we ESRD patients get from everyone, from family members to perfect strangers, "You have to stay positive." is probably the most heard and most frustrating one.

Often, we feel pressured to smile and pretend that everything is fine so we don't make the people around us sad or uncomfortable, but on the inside we are dealing with a stark reality.  We are chronically ill.  There is no cure for what we have. There are only ways to manage and buy time, and none of our options are particularly bright and cheery.  On the outside we may look as healthy as the next person.  Nobody knows about the tube taped up to your side underneath your clothes unless you show it to them. Nobody notices the access in your arm unless you choose to wear short sleeves so they can see it.  Those people aren't there at night when you hook yourself up to a machine, and they aren't with you three days a week at the clinic while you get your blood clean. Our hair doesn't fall out, we don't have to endure the nausea and discomfort of chemotherapy, so how bad can it be?  We often feel the need to play along with the expectations of other people in order to keep them from showing pity for us, or to keep them from worrying about us.  They need us to stay positive.  They are asking us to stay positive, because they can't handle us when we are realistic about where we are and what we're dealing with.

So I am wondering if "Stay Positive" is really a great piece of advice that through a mind-body connection leads to better outcomes for ESRD patients, or is it an unrealistic expectation placed on us by the people in our lives who aren't able to cope with our illness.

There's certainly something to be said for a positive attitude. It motivates you to keep working towards a happy life.  It helps you cope with difficult days and it keeps you connected to people in more fulfilling ways. However, I think it is truly unrealistic and even unfair to demand that someone who is dealing with the pressures of this disease or any other life-threatening illness remain in a positive state of mind at all times.  Part of processing the loss of health from chronic illness is finally coming to an attitude of acceptance.  Perpetual hopefulness requires a certain level of denial to maintain.  At some point, if we are to assimilate our losses and find peace with our lot in life, we have to acknowledge and accept what is happening to us.  Without that acceptance we will remain stuck, our personal growth will be stunted and we may miss out on a very important part of who we are supposed to be and what we are supposed to learn from life.

The reality is we will not be cured. We will not go into remission.  We will be coping with ESRD for the rest of our lives.  We will either be slaves to the dialysis machine or we will be transplanted with kidneys that might or might not last.  We will be swallowing hand fulls of pills just to stay alive, we will suffer the side effects and financial blows that the cost of maintaining life imposes upon us.  The reality looks pretty grim, and if it's your reality, you can only refuse to look at it for so long before the ugliness of it catches up with you.

We shouldn't feel bad about not being able to maintain a positive attitude all the time.  We shouldn't stuff down our thoughts and emotions to protect the people around us who can't or won't come to terms with what we are facing.  We can feel down sometimes.  We deserve the opportunity to grieve for the lives we used to have and to grieve for a future that seems fraught with stress and struggle instead of whatever we had always planned.  We need the space to make the transition from healthy to sick in our own way and in our own time-frame and we don't deserve the admonition to be positive every time we express a negative thought.

There is  often a fine line between dealing with reality and allowing yourself to fall into the trap of self-pity.  Staying in a place of sorrow and pity for yourself is no better than walking around with a fake smile plastered on your lips.  Either extreme robs you of authenticity. If you are perpetually positive, you may be unable to accept and process the negative effects of your disease, if you are perpetually depressed and full of self-pity, you will never learn to value and live in each moment you are given.

We need to give ourselves permission to feel our pain, our sorrow and even our hopefulness.  We need those who love us to understand what a complex process we are going through, and that it wouldn't even be healthy for us to never have a day when we aren't discouraged by it.  We are human and often our weaknesses and fears catch up with us, even when we are trying our best to keep a positive attitude towards life and our disease process. We don't want this for ourselves, and we don't want to put you through it with us, but it is what we have, so give us the freedom to experience it wholly in all its negative and positive ways.  Let us grow through it and with it, as you try to accept us even on days when we can't take your advice.

Maybe you're wondering now, "If I can't tell you to stay positive, what can I say when you're down?" And the best answer I can give you is to just be there with us.  Acknowledge with us how crappy things really are.  Let us be who we are in each moment, allow us to feel our emotions without judgement.  Don't shame us for the days or weeks or even months when we feel buried by the stress of a life with ESRD.  Just stand with us, give us permission to be.  Remind us that you love us no matter what.  Give us permission to grieve both aloud and in private.  This is our experience. It is our chance to grow, to become something new and better, but we will never achieve that if we aren't allowed the opportunity to process the feelings that well up inside us.

And perhaps during those times when we can't find anything to feel hopeful about, you can take up the slack and feel hopeful for us until we make it over the next hump and find our own place of peace and hopefulness once more.

Welcome To ESRD Support

I had my Facebook page linked to my other blog, when I realized that my other blog is much more personal and includes a lot more than just information or my personal experience with ESRD.  This morning I took the time to create a new blog page just for my Facebook followers on the ESRD page, and I moved some of my older posts regarding ESRD from The Quest to this blog.

My life isn't my disease.  I am not my disease, so I will maintain The Quest as a personal outlet to share my life experiences and document my personal growth.  This blog is strictly for ESRD related issues.  I welcome your comments and contributions and hope we are able to build a community of support for our fellow ESRD patients, their families and their loved-ones.

I hope that my personal experiences can at least help someone feel less alone in their battle with this disease.  I encourage you to share your own thoughts about coping with ESRD from day to day, how it affects your outlook on life, how it affects your children, your finances and even your spirituality.

There are so few support networks in place for people like us and our families and loved ones also lack the kind of emotional and practical mechanisms for helping us cope with our disease.  We experience losses and our families go through those grieving processes with us.  The least we can do is be present for one another in times of grief and transition.

Please take some time to wander around the ESRD blog and suggest any topics that would be helpful to you.

 I welcome guest writers who have something positive and informational to share with others.  Just contact me about writing a guest post. I will have to read it and possibly edit for grammatical mistakes before it is published and I do not guarantee that your contributions will be published, but I will read them and give each one fair consideration.  I make no money from this blog, so I cannot pay for your contributions.


Thanks for stopping by, and I hope you'll become a regular here!

Saving Time

Having a serious disease really changes a person's perspective.  Especially when it comes to time.

A lot of people are thinking about time today, the first day of daylight savings time for 2014.  In fact,  I have heard so many complaints about that lost hour that I finally stopped engaging people with, "I know, it really sucks." And just smiled and nodded instead.

It is one hour.  An hour of sleep no less.  It isn't as if you're missing out on an hour at your kids birthday party, or your wedding got cut short by an hour.  It's not like something has really been taken away from you at all.  It's an hour that will still come and go as usual, but with a different number to symbolize it.  12:00 pm, 1:00 pm, what's the big deal?

I understand the importance of sleep.  I really do, because if I don't sleep, I'm not myself.  I make silly mistakes and I don't comprehend much of what is going on around me.  Because of my disease, I have spent countless nights without sleep--much more than just an hour.  So pardon me if hearing you whine about losing ONE HOUR of sleep kind of irks me a little.

Time is something you really can't save.  You can't hoard it away and keep it handy to spend however you deem fit when the day comes that life makes no demands of you.  You can do things you do like to do a little quicker, but no matter what, time is ticking away and there's nothing you can do to stockpile it for later use.  You know the old cliche, "There's no time like the present?"  Well, it's a cliche because it's true.  The present is really all there is.

I'm not saying we shouldn't have goals and dreams.  It is only human and quite natural, by our design to look to our future and think about what we want to accomplish.  But if that's all we ever think about, we are wasting now.

Time can't be saved, but it can be wasted.  This is the bare bones of what having a life-threatening disease has taught me.  It's both a good and a bad thing.  It's good because it drives me to try to make my days count, even if in thee tiniest of ways.  It's bad because I, too often, beat myself up for not making my days count enough. I give myself grief over wasting time in the past, on people who didn't want or deserve my time anyway, and on pursuits that, from the beginning were wrong for me.  Then I start telling myself that I am not good at budgeting my time, that I don't value myself enough to make wise choices about whom and what I give my time to.  I start to think I can't trust myself to make good decisions and then I get paralyzed by the fear of making another mistake--wasting more of my time--squandering a resource I can never replace.

I spend a ton of time lately, just staying alive.  This dialysis at home stuff is no joke.  People see me out and about and they'd never guess there's a tube in my belly, or that I sleep hooked up to a machine every night.  They don't know how long it takes me to get ready for bed because of that machine, or how long it takes every morning to disconnect from it, throw out all the garbage it produces and then go about my day.  I lose more than an hour a day, just staying alive.  I don't consider it time wasted, but it would definitely be much more fun if I could spend it another way.

That brings me to another thing I've learned from having a serious illness.  People complain about the silliest things.  I hear them moan and groan about so many things they can't change, instead of accepting what can't be changed and concentrating on what they can actually control.  I hear them whine about "problems" that aren't really problems at all.  I realize we all have daily irritations that get in the way of our sunny outlook on life, but really, before you complain to some single mom who is getting by on the tightest budget imaginable about not having enough time or money to get your nails done this week, think about it.  And then keep your mouth shut.

If you have love to come home to every day, pleasant people to interact with in your life, children, extended family, or even just a few great friends, you have plenty of time-worthy endeavors to explore in your life.  Instead of lamenting a lost hour of sleep, you could choose to be thankful for the time you have to give of yourself to those you love.

Those of us with serious illnesses are reminded all too often that life is short.  Time eventually runs out, and it can't be recovered.  But really, everyone should think as much about mortality as we do.  None of us are promised tomorrow, and today could be the last day we get time to let our loved-ones know for sure that they are loved by us.

As afraid as I am of my own decision-making abilities, I have been trying harder lately to learn to trust myself.  If something or someone seems to  be leeching away my time without any regard for my life and the way it is spent, I have to let go of that person or that thing.  It isn't easy.  Especially when you have to let go of someone you love or a comfortable situation.  But if the decisions go unmade, my life passes me by without meaning or purpose.  Sure, others may benefit from my presence, but if their hearts and minds are closed to who I am and what I can offer through the gift of my time,  I should find a better place to spend it...a more appreciative and caring person to spend it with.

I still want to make a difference in the lives of others.  I still have love and care to give.  Those are things I can save up, for the time when the right person and the right situations come along.  But in the meantime, I have to keep busy working on myself.  Even though I'll return to dust sooner than any of us may think, the only way I can affect the world around me, is by constantly working to better myself, spending my time learning to be a better person.

And that means trying my best to not complain about losing an hour of sleep for daylight "savings" time.

Assumptions People Make When You Have ESRD

"It's really too bad about your disease." She said sadly.  "You're just too young to have to even think about spending the rest of your life alone."

"Yeah, it does suck." I agreed, wondering what made her even say such a thing.

"Well, like, maybe you could find an older man who didn't care about sex anymore." She offered.

"Why would I want to do that?" I asked, puzzled by the line of conversation.

"I don't want to discourage you," She said, "but isn't it going to be hard to find a guy your age who would be okay with not being able to have sex?"

"Probably." I answered. "But I wouldn't be interested in someone who wasn't interested in sex."

"But...you can't, can you?" She asked, genuinely baffled.

"Uh, yeah, I can." I said.

"But...how?" She wanted to know as if it were any of her business.

"The same way everyone else does."  I was getting annoyed.  The truth was, it wasn't the first time someone had assumed that since I was on dialysis, I could no longer function like a regular human being.

I took the time to explain to her that I have a tiny tube in my abdomen that in no way affects my female parts or my ability to engage in sex.  She seemed relieved.

"Oh, that's so good to hear!" She exclaimed.  "Well, you can have any man you want, then!"

"Right." I said.  "Any man I want."

People can make some pretty bold assumptions with just a tiny bit of information sometimes.  It happens to me a whole lot these days.  Since I had this tube placed in my abdomen almost a year ago, I have lost count of the number of people who have either assumed my sexuality was a thing of the past, or who have just come right out and asked me if I could still have sex.  It seems to be the first thing anyone thinks about.

No one considers that the most difficult thing for me in establishing any kind of relationship, is the very fact that I have this disease to begin with.  No one wants to be saddled with a sick person.  Very few men are brave enough to risk loving a woman who is depending on a machine beside her bed to keep her alive.  Plenty of them will step forward and offer to give away their kidneys, but practically none are bold enough to offer their hearts.

I don't blame them.  If I were them, I would be hesitant too.  I realize how much I would be asking of someone to commit to a life with me.  I'm a lot of trouble.  I'm stubborn.  I instigate arguments, I hog the covers, I get defensive and unreasonably angry over little things sometimes.  I make bad decisions, I let people take advantage of me and my car is usually far too messy.  Nobody's perfect, right?  But on top of the usual human flaws, I have this huge physical hurdle to overcome.  Who wants to put up with that?  Hell, I don't even want to deal with it.  How can I reasonably expect anyone else to take me on?

I'm not saying it doesn't get lonely.  It does.  I sometimes feel like I am in a desolate place and that I'm stuck there without hope of ever escaping it.  It seems unfair.  It makes me angry and even depressed at times.  "You have your children!" people say.  And I do love them dearly.  I'd take nothing for them. But children are not partners.  They aren't meant to share our cares or stay up laughing with us into the wee hours of the morning.  My son, especially, depends on me.  He isn't responsible for being my companion and he shouldn't be.  Being a parent is just not the same as being a companion.

Sex.  That's the easy part.  If love were as easy to obtain as sex, life would be a breeze.  But love takes courage.  It means committing in some way or another, to the acceptance of another person, faults and all.  Love isn't something you can give and then walk away from so easily.  It is an investment in another human being, not just their physical form, but every part of them.  Some of us are just too hard to love.  Some of us are just not strong enough to take the risk.

After all, what if I up and die?  I am well aware that my faults assure that kind of trouble far outweighs any benefit anyone could get from loving me.  It is only by the grace of God that any of us are loved. We can't really do anything to earn it.  I understand that human beings are just not capable of giving one another the kind of grace God shows towards us.  It isn't easy for us to love in spite of the obstacles.  It feels far safer to shield ourselves from pain; even to consciously work at not loving someone in order to protect ourselves.

I know I will probably never get a return on the investment, but love is important to me.  Even if I can't get it, I feel more whole when I can give it.  Maybe that makes me weak.  Maybe it makes me pathetic.  I really don't know how it makes other people perceive me, and it really doesn't matter.  At the end of my life, all that will matter is how I invested the good God gave me.  I'm grateful for the ability to love. I am learning to love without expectation.  I'm learning to give without hoping to receive.  I'm learning to be my own companion.

I have a long way to go.  Disappointment creeps up on me still. I still want too much from people at times.  This is just a journey without a destination--it isn't a race.  I know I'll never arrive, but for once, the most important part is not where I will end up.  It's the trip.

I'm bracing myself for one wild ride.

What NOT to Say to Someone Who Is Struggling

I went to see my therapist today.  She's a social worker, and in my opinion, social workers are much better than "therapists" at listening to people, empathizing with them, and helping them find their own way through their troubles.  I don't need someone to listen to me and diagnose me or give me pills to fix what ails me.  I just need someone around who will give me permission to feel what I feel without trying to judge me or talk me out of it.

One thing that came out of our conversation was my complete lack of patience with other people lately.  I talked to her about all the things people say about me and to me, how when I'm having a down moment or a bad day I get chastised for it.  She agreed with me, that sometimes people speak before they think, and even though they mean well, they can end up making you feel crappier than you felt in the first place.

I think it's only fair then to share some of the things that are just generally inappropriate things to say to someone who is chronically ill or terribly depressed, or both.  If you've said some of this stuff to me, don't feel bad about it.  I know all my friends and family want to encourage and be helpful to me and I know you don't mean me harm. 

1. "You have to stay positive.'  No, I don't.  I've found myself floating around in the whirlpool of a life with crap floating all around me and you want me to stay positive?  Before you utter those words, let the reality of my situation sink into your head:  I have END stage renal disease.  I am on dialysis.  I have a broken leg. My house is in foreclosure.  No one will hire me because they seem to think that I can't work and be on dialysis at the same time. I have a rocky relationship with the daughter who lives in my upstairs bedroom. I have fatherless seven year old who has anger issues. We won't even talk about the loneliness or the screwed up relationships or any of that stuff.  Think of your life when noting extraordinary is going on.  Think about your every day stress and then add my stress to that.  That is where I am every morning when I wake up and every night when I fall asleep.  It isn't going to change. There is no cure, no way out of this except through it, and sometimes going through something means being tuned in enough to your reality to let it make you feel shitty.  So I will have shitty days and weeks and maybe even months.  It doesn't mean I've given up hope, it just means I need to feel and process what's happening to me and I do not have to be positive all the time. 

2. "But you are so strong!"  I don't feel strong right now.  I realize I have overcome a lot of  adversity and I'm glad you have confidence in me, but I am not strong.  No one can be strong all the time.  I am grieving for a part of myself that has essentially died.  The part of me that was independent, outgoing, confident and active. This disease takes away so much and if I don't take the time to be weak, to let myself grieve for what I've lost, I will never make it to a healthier place. I am not strong and I can't be strong right now, but maybe I need you to be strong for me.  I'm sorry it makes you uncomfortable when I am not the person you used to know, but I"m dealing with some shit here, and this is the kind of shit that can make a weakling out of even the strongest person.

3. "Why don't you_____".  Fill in the blank.  Go back to work. Go visit your family. Get a new hobby. Invite people over...etc...When you start a question with "why" it sounds an awful lot like judgement.  I feel like you're telling me I chose this for myself.  It seems like you don't understand or haven't considered the fact that I have been fighting this all my life and that I have given it my best shot.  Guess what?  It caught up with me anyway.  No one will hire me once they know I am a dialysis patient. My family makes me feel like I'm losing my mind. My hobby is this blog. I'm ashamed to have people over because my house is a freaking disaster area.  I never realized how much harder housework would be without the use of one leg.  Trust me, if I'm NOT doing something you think I should be doing, I have a good reason for it or I've already tried it or I'm trying it right now.  My reasons  may not be something understand or agree with, but for me, they're reason enough.  Why don't you keep your judgmental attitude to yourself?

4. "It doesn't look that bad." I have explained a million times why my leg isn't in a cast, but for some reason, once people realize it isn't in one, they seem to think my little broken leg isn't such a big deal.  My leg is broken IN my knee joint. Meaning the bottom part of my leg on which the integrity of my knee depends is simply not there. It was crushed in the accident I had, and now my knee is being held together with pins, bone grafts and a plate. It isn't in a cast because it is my knee, and if I go too long with out moving it, it will get stuck in a straight position.  Ever tried to walk without bending your knee?  I don't want to walk like a pirate, so sue me.  I do the range of motion exercises I'm supposed to do every day even though it hurts because I want to walk normally again someday, which is something my doctors are telling me might not happen.  They say I'll probably always have a limp. So, maybe it doesn't look bad from the outside because there's no cast on my leg, but it is a horrible way to break a leg so give me some credit for putting up with this and whatever follows it.  Would you want to hop around on one leg for 3 or 4 months?  Didn't think so.

5. "Well you look great!" I get this one a lot, usually from people who haven't seen me in a while.  I don't know what they're expecting me to look like, but apparently I defy the imagination.  Inevitably they ask how I'm feeling, and then they follow that up with "Well you look great!" Thanks for the compliment.  I realize you're referring to my recent weight loss, even though it has come at the price of my health.  I'm sorry to disappoint you by not looking sick enough, but this is just who I am.  It's as though you want me to forget about the fact that I'm battling this disease or trying to recover the use of my leg and just be happy that I at least look good.  I don't mind being complimented so much, but when you tell me more than once in a sitting that I look good, I start to doubt the honesty in your voice.  If I look so good, why do you have to keep saying it? Who are you trying to convince, me or you?  Whether I look like it or not, I'm struggling with this.

6. "You're letting this get the best of you." Let me just say that the best of me is all that's left. This is a disease that strips you of everything you have ever felt good about.  It attacks your self-esteem by disfiguring your body. It makes you tired when you want to be energetic.  It makes the people in your life scurry away like mice.  It robs you of financial security, your job, your pride in what you've managed to gain for yourself. It makes you feel incompetent, alone and quite lost.  It takes away your dreams for the future and it makes you regret a lot of your past. It makes the people you love worry, it makes them pressure you to act like you feel fine when you really don't. It robs you of time and resources.  It strips away so much of who you are and once it's done doing its stripping, there's nothing left of you but whatever lies at your core.  The best of me is who I am when I'm at my lowest, and I don't think I've ever felt much lower than I do now. So don't tell me that the best of me has been defeated or that I've let this disease take even the very essence of who I am away from me.  If I'm hard to love it's not because the best of me is gone, it's because this is all I am and all I've really ever been without the frills.  

7.  "You have so much to live for." I do?  Oh, you mean my son.  I have my son to live for. I guess you're right. But children grow up and move away.  Then what?  What will I have to live for once he is finished growing up?  I know you can't answer that question for me.  I can't even answer it for myself right now, but I know it has to be more than the cause of raising my child.  He's important to me and I love him with all my heart, but I can't put the burden on him of being my only reason to live.  Nobody needs to live with that kind of pressure, especially a child.

8. "I made it through_______, so you can make it through this."  A week or so ago I made a comment online about the difficulties I'm having with my son.  Someone posted that she made it through raising her son, so I would make it too.  The difference is, she didn't have a 7 year old at 44.  She also didn't have ESRD or dialysis.  She wasn't single either.  She had a good paying job and as spouse and her health. It isn't a fair comparison.  While I'm sure she faced challenges, they weren't even close to the challenges I have.  Likewise, people often tell me of the struggles they have overcome in an effort to make me feel better about coming out on the victorious side of this disease.  But what they don't get is that no one is ever victorious over kidney disease.  It is incurable.  All I will ever be able to do is cope with it.  If it decides to take more from me than it has already, there's not much I can do about it.  I will make it through this, but I won't make it out alive, and that's the fundamental difference between me and most of the people who want to make comparisons.

9. "You shouldn't feel that way."  I am aware that I sometimes let my thoughts and emotions overwhelm me.  I know you don't like knowing when I'm depressed or feeling particularly hopeless about things.  But the truth is, I feel how I feel.  I will never tell you that you're wrong for feeling the way you do.  All anyone really needs to is to be heard and accepted, and if you really want my feelings to change, you'll hear me and give me permission to feel what I feel without judging me.  Everyone deals with situations where they should or shouldn't do or say or feel certain things, and in time we work our way out of those circumstances, but we often can't get through things if we deny ourselves the right and yes, responsibility, of feeling our emotions. This might not be easy for you to hear or go through with me, but it is necessary if I am ever going to grow past it and let it change me in all the ways I need to change in order to cope with it and live my life.

10. "Why did you do that?"  Part of being single is learning how to manage on your own without help from other people.  Being a single mother makes that all the more important.  So after I broke my leg, I had to start adapting right away.  That meant that I had to do some things for myself that were risky and it meant getting hurt once or twice trying to do those things. But when people found out that I had tried lifting a heavy box by myself or tried to make the bed without leaning on crutches (which is nearly impossible) I got the high-pitched "are you crazy" form of "Why'd you do that???"  I did it because I had no other option.  I did it because I was the only one here and I had to do it for myself.  I would like help with things sometimes, but I don't always get what I want and when I don't have anyone else to depend on I have to depend on me. I do what I do because I have to.  So don't fuss at me about it, especially if you don't want to help me with it.

I'm sure I, Like everyone else, have said some pretty stupid things to people without realizing it.  I'm positive I have.  When you've never been in the same situation as someone else, when you don't know the history behind who they are, you can't always know the right thing to say.  You want to help, to encourage and be supportive, but sometimes what you say makes matters worse no matter what.  It is in those times when you can never fail to help by just letting the person you love be who they are in that time and place. Allow him or her to experience emotions, good and bad and accept them, even if you don't understand them.  More than anything, I need to know that my friends and family love me unconditionally.  I need to know that they don't think less of me when I'm not positive or optimistic.  I need permission to be who I am, feel the way I feel without judgement, without being chastised and without feeling as if I am disappointing everyone around me by being human.

I know sometimes you're just trying to understand me.  Sometimes you're sick of my attitude.  Sometimes you've had enough and you just want a break from me and all the trouble that comes with me.  I understand that, and I'm not angry with you for it.  I just hope that by sharing this I am able to help those who want to be an encouragement to others, and maybe help other people like me who struggle with enough already, without the people around them putting their mouths in gear before starting up their brains.

And if I have ever said an insensitive, thoughtless thing to any of you in your times of trouble, I sincerely apologize.