It's time for another edition of the What I'd Like For You To Know series, in which I've invited some women to share some common struggles, misconceptions and victories about their particular life circumstances (for the complete series, click here.) Today's guest poster is Kelli, from Living In Grace. Kelli is the mom of two teenagers, and she's been married to John for 18 years. She is living with Stage 5 chronic kidney failure. She is on full time dialysis at home, through a peritoneal catheter. Kelli has graciously agreed to tell us about life with a serious chronic illness.
On my way out to a doctor’s appointment, I stopped to check email one last time. There was an email from Shannon, asking me if I’d be interested in writing on chronic illness for her “What I’d Like You To Know” series.
Whoa. Heart skips a beat.
See, I’ve written about some of the aspects of living with kidney failure over the past two years I’ve been blogging but in my heart I knew I’d have to go deeper. Further into myself than I’ve been willing to go.
And not because Shannon required it of me. But, because God required it of me. To go to that place I’ve been so unwilling to go with anyone.
I had a decision to make. So I took the afternoon to think, and as things played out, I knew God had a plan. I found out that things are worse than we originally thought, and that I need to have surgery again within the first couple weeks after we move the 27th of this month. (Anyone in the Bend, OR area? Feel free to come on by and grab a box!)
So, here I am. Laying it out there for the first time. Putting to paper those things that have been buried so deep inside me.
Some background …. I was raised with chronic kidney disease. Undiagnosed with renal reflux in the 7th grade, surgery proved too late to save my left kidney. Years later, after a marriage and 5 miscarriages, I had it removed. Two healthy pregnancies followed, and for the next 15 years I was kidney problem free.
In 2006, I visited the doctor for a routine checkup. And found out my right kidney was failing. After consultation with a specialist, I was put on home peritoneal dialysis in May 2006.
Living with chronic illness is hard. There is not one aspect of your life that remains untouched in some way. There is no more “routine”, “normal”. Everything has a thought, a reason, a purpose.
Everyday Life
As this thing has progressed, I’m losing some things I’ve taken for granted. Walking and balance being the two most annoying.
Everyday things, like standing, walking, putting on a pair of pants, taking a shower has become an orchestration of thought and resolve with sometimes comedic outcomes. I have to sit to get dressed – trying to stand on one leg and put it in a pant leg usually ends with me on the floor. I have to lean against the wall in the shower while shampooing my hair. I have one hand in the wall at all times, security and balance in just a touch. My daughter goes with me almost everywhere now, carrying wallets, keys etc.
I can still drive, as it requires a different motion than standing or walking. I park in handicap spots, and have been told I don’t “look” handicapped. What does that mean? They say “You’re too young to be parking there.” Ok, so lad things only happen to old people? Uh, no.
It’s amazing, when you lose the ability to walk alone for long distances, how long those hallways at the hospital become. Or the distance between the parking spot and the door. Every step is carefully thought out. Feared. Is this the time I put my foot down and my leg gives out? Will I end up at the door, or on my face in the asphalt?
I will say that we have one blessing, though. My husband is able to work FT from home. So there is that help. We hope to be in a position to get him a laptop in the next year or so he can work at my appointments, as my ability to drive may come into question.
My biggest fear currently?
The numbness that started in my feet and taken so much away has started in my hands. My fingertips are numb. Will I lose the ability to type, hold a pen, feed myself, dress myself?
I have started physical therapy and they have prescribed a walker. A walker. I’m 43 years old. I know it’s the right thing, but my head won’t wrap itself around that. It’s giving up. It means-
I can’t.
Not without help.
No longer on my own.
Family Effects
No child should have to watch their parent go through something like this. In the last 3 years we’ve lost both grandpas and I was diagnosed with kidney failure. How much should they be forced to bear? Now. They are going to a new high school. In a new town.
They do their best to help me, as does their dad. Sometimes too overly protective or helpful, but it’s their way of coping.
From my standpoint, I’m learning to ask for help. There are things I can’t do, and asking someone else to do it is hard for me. I feel like a mooch. I want them to look at me and say “Oh go do it yourself” or something.
Going out on my own doesn’t bother me. Well, it doesn’t bother me the way people stare when they see me walk, or stumble.
However, I’ve become more reticent about going out with my family, because I feel like I’m embarrassing them. Who wants to be the one with the weird mom? It’s something I’m dealing with. Daily.
Financial Impacts
The most common thing families going through a medical crisis share, but are loathe to talk about, is the financial impact it can have.
Praise God for insurance. Without it, I don’t know what we would do. Well, I’d not be able to apply transplant, for more thing. They like you to be able to show the ability to, you know, pay.
Even with insurance though, come those day to day impacts. I had to leave my job in November 2006, so we took a hit there. There are medication costs, deductibles, emergency room visits, and the big one …. The cost of travel to multiple appointments a month. Especially with gas prices where they are? Geesh. So I try to schedule as many on the same day if possible.
Everyone seems to be anxious to spend your money. At the physical therapy appointment yesterday, they prescribed a walker. And our insurance will cover $150 or the $350 cost. The kicker? We pay the $350 up front, and they will reimburse us. In about 2 months. If they approve it.
Hello? If I had $350 laying around, a walker is not the first place I can think to spend it. Get in line. Other priorities are ahead of you. Like the grocery store, or the power company. Shoot, simple things like school clothes for the kids. Unfortunately, unlike homeschool they can’t do it in their pajamas. (What’s with that anyway?)
To sum it up? A friend of mine, also dealing with a life-altering issue, once said “ Home ownership? Eating out? Extras? Ha! Those are for people not dealing with things types of things …”.
Amen, sister. Amen.
What Would I Say IF I Had To
When I started thinking about what I would write for this, I started a journal. Putting down feelings and thoughts as they came to me, as situations occurred seemed to help me capture the day to day emotion of living with a chronic, life-threatening issue.
To avoid giving you a 42 page novella, here is a simple list of things from my heart. The hard things. The ones I’ve never wanted to say out loud.
• I’m still capable of doing things
o I may try to do things that I fail at, or mess up really, really bad.
o I need to try sometimes. Most of the time.
o Please don’t get frustrated with me for not asking for help. Please ….
o Please don’t get frustrated when I do ask for help. It makes me less likely to ask for help the next time.
• If you want to know something about my illness, please ask.
o I don’t want to talk about it all the time.
o It’s a part of me, like putting pants on one leg a t a time
o I won’t be offended by you asking
o If I’m not at a point where I’m comfortable talking about a particular thing, I will gently let you know.
o There are no bad questions.
• Chronic illness has no “set” answers.
o Everyone will be different.
o Treatments will vary.
o Response to treatment will vary.
o If you know someone walking the same path and want to share something about it, please do. But please don’t be offended if I don’t put it into practice, or share how it was tried and failed for me.
o Treatment of some chronic illness requires changes each month or so. Please don’t assume we are not “letting things run their course”.
o When you are in a fight for your life, you may appear to grasp at straws, but that one straw may be the answer.
• I’m exhausted.
o I have a hard time saying no. Help me by asking if I can do something, but understand if it’s a “bad day”. I never know until the moment.
o I am lousy at asking for help. I will try to do everything myself. It’s my way of coping.
o If you want to help, being specific sometimes helps. “Can I bring you some leftovers, or help you fold laundry” is more helpful than “What can I do to help”. Sometimes, I just am too tired to see the forest for the trees.
• I’m emotional.
o This is draining. In every way. Please don’t walk away from me if I don’t respond right away or seem snappy.
o Understand that sometimes I just need space to not deal with things. I want to feel normal for a minute.
o I welcome comfort and assurance, but not being smothered in it. It makes me feel weak. I can’t afford that. I must stay strong.
• I’m human.
o I will make bad decisions about everything at times, including my treatment plan.
o I feel.
o There will be things I keep private. I’m not hiding anything from you. I need to process things before I can share them. Some things, I may never share. They’re too personal.
o Humor and sarcasm are my way of coping. It’s not that I don’t take things seriously, I do. But, I need to deal as I need to deal.
o Breath by breath, laugh by laugh - it works for me.
• I’m afraid …
o … of dying. Not because my eternal life is not secure, but because I just won’t be anymore. Be here. Be with my family. It’s hard to explain rationally, but it’s a fear. It keeps me awake at night.
o … of not being here to help Kati pick out her wedding dress or hold her children as they are born. To celebrate her successes, and help her through the failures and heartaches.
o … of not being there to meet that one girl who will send Jonathan’s heart soaring. Complete him as he never knew possible on this earth. Hold his children.
o … of not growing old with John. Enjoying retirement together. Seeing his eyes sparkle. Hearing him laugh. Feeling his touch.
Through all of this, though, I do know one thing.
The one thing that keeps my head above water. That pulls me up when I start to sink to the bottom.
I have hope. Hope in Christ Jesus.
Someday, I will be healed. I will be whole.
Whether it’s through transplant here on earth or in death and I’m taken to glory –
I Will Be Whole Again.
Of that, I am completely, unabashedly, guaranteed of.
And that, dear readers, is worth every appointment, every pain, every struggle.
Every, everything.
Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid. - John 14:27
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To learn more about become a living organ donor, or Kelli’s battle with kidney failure, visit her at Living in Grace.
