Five Things I’ve Learned So Far in Dialysis

Five Things I’ve Learned So Far in Dialysis

I am approaching two months of dialysis very shortly and I want to write about what I have experienced so far.

Several things I have learned about myself in this “new normal”:

  • New co-working space (sort of): Outside of a coffeehouse and a library, I have found that a dialysis clinic is a good place to zone out and be with your own thoughts. After all, you’re not doing much for 3.5 hours, three times a week, but watch television, read a book, or have your nose in your phone. I’ve started to watch The Food Network a lot recently. Not that I’m hungry, but I’m interested to see how you cook food better and be creative.
  • Pass on the water: Drinking water or liquids is good. Too much of it can result in cramping during treatment. Your kidneys can only flush so much out of your system. The same goes with a dialysis machine.
  • Appetite: I don’t have much of an appetite anymore. I have also started to dislike certain foods that I ate regularly before. I get violently sick after nibbling on a Reese’s peanut butter cup or a Sunbelt granola bar.
  • Physical challenges: my balance is a little off, since I’m not carrying so much edema in my legs. It’s weird as hell seeing your legs go from the size of cannons to “normal”. Getting around takes a little more time. My vision has changed slightly. I’m so not ready to get new glasses. I just got new prescription sunglasses in February.
  • Speech and Brain: This is where I have the most trouble with. I didn’t know what septic shock was, until my physician mentioned it after I was released from the hospital in May. Since starting dialysis, I have been unable to form complete sentences, and stuttering and slurring certain words. As I read about the affects of septic shock, I can only conclude why I was stuttering: septic shock effects the entire body: major organs, brain, and limbs.

According to the Sepsis Alliance, nearly 1.4 million people survive sepsis, but they face life-long challenging changes. Sepsis have a high death rate, particularly with the elderly, young, or patients with weakened immune systems. Since I live with diabetes, I fall into the latter category.

In a 2010 article, Medpage Today reported that 59.3% of patients hospitalized with severe sepsis saw worse cognitive or physical function or both by their first post-sepsis assessment.

I knew my kidneys have failed, but no one was able to figure out why I am unable to talk smoothly. Septic shock leaves a mark, permanent or temporary, on your motor and cognitive skills. You feel like you are trying to get out of mud.

The brain, by nature, process what you see or hear, and then sends a message to the mouth to relay what we hear and see. As a life long mild stutter, it has become increasingly difficult to say what I am thinking or want to say.

It is frustrating to run into friends and people I know, and not know their names right away and recognize them, as well as carry a normal conversation without stammering constantly.

The inability to have a conversation with people have become a rather embarrassing predicament.

The cognitive and motor skills are the nerve centers to how we process and dispense information. When those skills are affected, or taken away, by a stroke for example, patients feel trapped inside their own bodies. We take talking as a simple task for which we blindly take for granted.

I will need intense speech therapy/rehab in order to relearn how to talk. I love to write, but not everyone wants to read your thoughts…they want to hear it.

My body is going through changes that, to be honest, frightens me. Have I been sick for so long that I didn’t realize that it was silently killing me?

Going through kidney dialysis, and the goal to get on the transplant list in the fall might be the easiest tasks to do.

It’s my mental and vocal capacities that I worry about. I need those in order to communicate.

“Off Center”

“We have a chair ready for you.” 

Those six words rung in my head as I started outpatient dialysis this week.

The mere notion of kidney dialysis would make a millennial grimace with visceral pain, shrug it off and go “well, at least it isn’t me.”

Well, since this is about me, being on dialysis has been a strange experience , not just for the obvious reasons.

Dialysis, be definition, is a process for removing waste and excess water from the blood, and is used primarily as an artificial replacement for lost kidney function in people with kidney failure. I had always carried a lot of fluid or excess water in my legs. It was that way for a long time, to which I had taken diuretics to flush the water out. There is so much water in my legs, that when dialysis is used, my legs cramp up. It can be crippling and yet effective.

But that’s not the only thing that has effected me physically when it comes to dialysis.

As a life-long clutterer/stutterer, I have always prided myself with how I speak. Since I’ve started, my brain and motor skills has been so disjointed it scares me. The process of dialysis is to restore equilibrium and to purge the toxins and excess out of your blood stream. As a result of that, my “balance” is way off. On Saturday when visited me at the hospital, I couldn’t spit out one consistent sentence without hitting a block. The more I listened to myself during my conversations with others, the frustrated I got in how I couldn’t say words that would normally come out.

I don’t know how to explain it, but it is weird on how my speech can be out of sorts as I begin dialysis I wonder if anyone has had any strange occurrences or have felt “off-kilter” while starting or have been going through any type of dialysis, “clean-living” or any type of body purge?

Filling in the Gap: What Five Years of Unemployment Has Taught Me

Filling in the Gap: What Five Years of Unemployment Has Taught Me
When unemployment happens, it sucks and the worst feeling in the world. It still is the worst feeling in the world, but you make the best of it by wits, survival, and determination.

Five years ago last week, I went from the working world to being unemployed. I wouldn’t wish unemployment on anyone…it’s been a rough journey, and at times, I feel like hiding from the world.  I don’t know how I have survived this long not having full-time employment, but I have and continue to do so. 

I have gone through experiences that has shaped and reinforced my perspectives and surroundings.

Here are a few lessons I have learned during the past five years of being unemployed.

“As the World Turns”: The world does not stop or end when you experience a life event. Losing your job, divorce, death, or an election (you see what I did there), it doesn’t matter, the world keeps moving. So do you. You can’t stay frozen in time, ruminating about what happened.

“Friends in Low Places”: Very good friends (better yet, friends you never expected) are the ones who know how talented you are and will find a way to help you find work. One pal had me work for him at his company for three months, and another friend got me work doing social media, writing online content, and stats for prep football.

Not all of your friends and networks are going to help you. Most of them don’t have the time to help. Be wary of the person who say  “I’m sorry for you” and facetiously act like they’re sad for you. They are the ones most likely never to offer support, encouragement, or assistance. 

“Jack of all trades”: After I became unemployed, I wanted to do something that was not insurance-related. When you’re in an industry or career for a period of time, you are stereotyped as doing that one thing forever. I went out on a limb and applied to be an unpaid intern for a local art agency. After that, three different stints as a temp for a human service agency, and two of the largest employers in my city. 

Since my first job out of college, whatever job I was supposed to do, evolved. I wore different hats and took on roles that I didn’t expect to do. Being adaptable in the workplace should be considered as a benefit, but most employers, sadly, prefer to hire a candidate who is proficient in one skill over one who is multi-skilled.  

Richard Lewis knows what it's like to get stood up.
Richard Lewis knows what it’s like to get stood up.

Move on after getting “stood up”: After a panel discussion in my mentoring class in 2013, a well-known retired local executive approached me. We spoke about my reasons for being in the class and my hope that the class could help me be fully employed again. He asked for my business card, told me there was someone who might be interested in me, said thank you and left.

I have not heard from him for two years now, despite attempting to reach out to this person.

This has happened several times with other local business leaders I have encountered. If I hold up my end of the bargain, how bad does it look if a leader/mentor doesn’t do the same?  

There will be people or groups that are not worth dealing with. If they have no interest in you, don’t bother attaching yourself to them. They are not worth the effort…and that’s their loss.

“Breakdown Dead Ahead”: All of us are going to have a breakdown. Not just mentally, but physically and emotionally. I have written about my health issues in the past. No, I don’t blame elected officials. That’s on me. I didn’t ask for help.

Just because we have a nation-wide health care plan, that doesn’t mean that you should let your health go south. Your doctors are not with you everyday to ensure that you are following orders. That’s your job.

What have I accomplished over the past five years?

  • created a personal blog (this one)
  • worked short stints in the human resource and marketing fields
  • created social media channels for a non-profit organization I serve on the board for
  • writing online content for a sports website
  • received two awards for community service
  • listened more to people (I already do that, but do it more intently)
  • learning about startups and entrepreneurship and its local impact (Bloomsnap, Dwolla, and Bawte for example)
  • not afraid to write something that could be unpopular or not considered as conventional wisdom

What do I hope to accomplish down the road?

  • be employed (of course)
  • start dating (I’m 38. How I haven’t done that is beyond astounding.  Hello Andy Stitzer.)
  • find another non-profit organization to volunteer for
  • do a better job of leveraging my networks
  • write a guest column for dsm Magazine (I doubt it’ll happen, but a guy can dream, right?)

The pieces we need in our lives are around us…we need to put them in the places that fit in our jumbled puzzle we call life. Hopefully, I will return to the working world. I need it, not just for the paycheck, but for the opportunity to have a passion and drive again to make something better and do good in society.

The Second Eighteen Years

Support is important.

This past Saturday, I celebrated an anniversary.  It wasn’t the wedding variety, a breakup, or the time I taught myself how to catch a baseball with my right hand, so that I wouldn’t have to use my left hand to catch the ball, slip my left hand out of the glove, and throw it.

Saturday marked the 18th anniversary that I was diagnosed with diabetes.  August 18, 1994 was the day I learned that I was going to live with a chronic illness for the rest of my life.

The first 18 years of my life was being a kid.  The second 18 years has been much different.  I don’t consider myself a perfect diabetic by any means.  I’ve had my good and bad days, and days that made me say “how in the hell did this happen?”  Case in point:  In 2005, I thought my blood glucose was doing well one night after a pasta dinner.  Around 10:30 that evening, I headed off to bed.  The next thing I know, I’m on the floor, in front of my bedroom closet, with one of the sliding doors on top of me. 

Hypoglycemia is unkind to us PWDs (people with diabetes). 

In assessing the second 18 years of my life, I’m fortunate.  I still have my eyesight, though glasses do help see things that some umpires miss.  Limbs still intact, though I’ve had some issues with my legs.  It’s no fun when your legs and feet swell up and feel like the Goodyear blimp.  That’s what ottomans are for.  Your feet needs to relax too.

People ask me if I wished I didn’t have diabetes.  For a while, I didn’t have a good answer to offer.  On one hand, fate assigns you something that you didn’t ask for, and on the flip side, there is a reason and a purpose for you to be dealing with it.  I’m in a position today in which I can say that I would rather live with diabetes.  Why?  Because I have a story to tell and people who need to hear it, if they’re willing to hear it.

Which is why despite telling friends and acquaintances about living with diabetes, there seems to be a level of apprehension or indifference towards talking about it.  We are comfortable talking about cancer, simply because we know more people who were diagnosed and have survived cancer.  Cancer is more commonplace, given it’s profile by individuals like Lance Armstrong and groups like the Susan G. Komen Foundation.

When it comes to children, we’ll bend over backwards, go to the moon and back to ensure children get the best care, love, and tools they need to be successful.  That’s a natural response by adults to that.

However, when it comes to our health, as adults, we turn skittish, for fear that what we reveal may bring unwarranted scorn or shame.  Mental health, multiple scerlosis, and other chronic illnesses and diseases are still considered as taboo in public to talk about, especially among those in my age group (young professionals). 

For me, it is not worth keeping silent about diabetes.  If I have a hypoglycemic (low blood sugar) episode, I want my friends to know what to do to if I start to feel dizzy and slurring my words.  If I need support, I want my friends to show support, whether advocating, financial, or in spirit, to educate others what diabetes is.

I don’t ask a lot out of my family and friends, because it’s not my nature to do so.  I would rather give than receive.  But I know that eventually I have to ask for support and help.  My health isn’t going to remain the same in the next 18 years, as it was in the first 18 years and the second 18 years. 

The Central Iowa Step Out to Fight Diabetes Walk will be held on October 6th, starting from Nollen Plaza, thru East Village, to the Capitol and back to Nollen.  To learn more about participating in this year’s walk, contact the American Diabetes Association of Iowa at 515.276.2237 ext. 6865, or jmatalone@diabetes.org

Deadly Strokes

I was never a big rap/hip-hop music listener.  There are some songs that I didn’t mind listening to, but I don’t have any opposition to it.  Many in my age group groan in displeasure if they ever catch me singing along to Motown or Barry Manilow (yes, I’ll admit that).

Nate Dogg (left) and Warren G (right). Nate Dogg died last week after complications from suffering two strokes. He was 41 years old.

 

Last week’s death of Nate Dogg, the “hook singer” to hits like “Regulate” with Warren G., wasn’t just a shock to many fans and listeners.

It’s a trend that my age group should start paying attention to:  strokes.

The growing number of strokes among younger adults under the age of 40 is rising.  A great friend of mine suffered a stroke at age 40.  A college classmate’s co-worker’s husband suffered one at age 32.  Nate Dogg had two of them, before dying at age 41.

This is alarming and scary.

As someone who has both sides of the family with a long history of heart disease, high blood pressure, and diabetes, I can’t help but to start adding stroke to an already full plate of health concerns I have to worry about.

What is causing this rise in strokes in younger people?  Stress?  Sedentary life?  Culture?

I don’t have an answer for it, but I do know this:  by taking better care of myself and my diabetes, I lessen the likelihood of having a heart attack, blindness, stroke, amputation, and kidney failure by a few extra years.

This week marked the 1st anniversary of the new health care bill that was signed into law.  For many who are unemployed and are having to weigh between taking care of their health or keeping a roof over their heads and food on the plate, we can only hope that the healthcare plan works.

If it doesn’t, do not be afraid to review what doesn’t work and fix it.

But beyond that, we have to take better care of ourselves.  Some of us “youngins'” are not as healthy as we think we are.

Superman eventually will have to call in sick one day.

The Health of the Organization

I need help. 

I can’t think of another way in putting this out there but I will. 

Fundraising and talking is something I have feared for a long time.  I hate asking for money and public speaking is something I can’t do at all.  Marketing, well, I couldn’t market or sell you a lemon torte, though if enticed, I would buy one. 

I’m a volunteer and a board member for our local American Diabetes Association chapter here in Des Moines.  The past two years have been, to be politcally correct, tough.  We were the only chapter in America that was in the red last year.  We’ve struggled to get new volunteers, retain long time supporters, and be out front in the community. 

It’s not a very nice distinction to have. 

We want to re-introduce ourselves to Des Moines. Where and how do we start?

In January, we brought in a new executive director to help us assess the health of our organization.  I’m not afraid to say that we have an uphill climb.  No one knows who we are, what we do, and if we try to go out in the community, no one has interest in diabetes, in general, other than to say that their “uncle/grandfather/mom” had and died from diabetes, but never about what they learned about it. 

I hate asking for help, but I have to ask because every non-profit and charitable organization is getting support in Des Moines, financially and non-financially, KCCI will lend their name to every cause, celebrities love riding the coattails of organizations, and I feel like the only person in the world who wants to promote ADA, but I don’t know where to start. 

Why am I supporting the ADA?  Besides being a board member (the youngest) and lending my time as a volunteer (health fairs, office work, working events), I am a Person with Diabetes (PWD).  For the record, a Type 2 diabetic.  I have a full time job in managing how my body functions.  How much insulin do I need to take (Lantus or Humulog), is my glucose level okay for me to indulge in a salad, do my feet look swollen or feel numb, and on and on. 

Dick Clark, America's oldest teenager, was diagnosed with diabetes in 2003. Despite his stroke and limited mobility, he's still rocking-and-rolling.

I believe in the mission of the ADA.  It’s not just raising money to find a cure, as many people assume non-profit organizations only do.  The ADA have support groups, education programs, list of references to specialists, and materials that are as easy as a click of the mouse or a phone call away.  Yeah, we want to end diabetes, but for those who have it, like me, it’s not a death sentence.  Look at Patti LaBelle, Joe Frazier, Sonia Sotomayor, and Anne Rice.  They didn’t stop living when they were diagnosed with diabetes.   I haven’t stop either. 

How do I help ADA “re-introduce” ourselves to the community?

Sports and News Links – October 8, 2010

 

Prepared to be spooked out at the Bad Dreams Ball. (Ann Hamilton portrait of "commute 1"/courtesy of the Des Moines Art Center)

 

Tonight, I’m working the “Bad Dreams Ball” hosted by the Des Moines Art Center and Art Noir.  That means I will not be doing score updates and the Twitter feed for KWKY radio tonight, as the Dowling Catholic Maroons visit the Johnston Dragons.

But that doesn’t mean I’ll be too far from the action.  I’ll be following Twitter and the hashtag #IAHSFB to get my updates from across the state.

Without further ado, let’s check out some links today.

-Adam Jacobi of CBS Sportsline posts an email that was sent out by Montana’s athletic director Jim O’Day addressing concerns about Montana’s possible move to Division I and joining the WAC.  O’Day expresses concerns about the financial state of the Grizzlies and if it’s worth moving up.

-Twenty years on Wednesday (Oct. 6), Colorado and Missouri hooked up for a Big 8 football game.  What culminated at the end of the contest was the infamous “Fifth Down” play that gave the Buffaloes the win.  St. Louis Post-Dispatch‘s Vahe Gregorian re-tells this game and how it propelled Colorado to a national title and sent Mizzou into a decade-long spiral.

-Michael D. Bates of the Hernando Today (via Tampa Bay Online) chronicles how poverty is forcing people to make desperate choices to survive…even if it means putting their health off to the side.

LearnHub marks the 40th anniversary of the “October Crisis” as it became to be known in Canada.  The Quebec Liberation Front kidnapped two Canadian officials, killing one of them, forcing Prime Minister Pierre Trudeau to invoke the War Measures Act, suspending all civil liberties in Canada which resulted in a “police state.”

One of the most memorable moments of the October Crisis was the interview exchange between Trudeau and a CBC reporter, in which at the end of the clip Trudeau uttered “Just watch me” when asked how was he going to handle the situation.