Why this blog?

Welcome! Thank you for visiting my blog!

This is my medical and recreational blogsite. Some of the entries on this blog are honest and quite vulnerable, as I wrote them at my lowest point. I try to keep a positive outlook on life, because no one wants to hang out with a downer, including me. Writing these entries has allowed me to see the world through a beneficial filter that allows me to appreciate every moment I have been able to experience in my life, even the difficult ones.

My husband Matthew and I LIVE when we can. I mean we suck the juice out of life, and we aren't ashamed of that outlook. It makes the bad times ok somehow because we took advantage when we were able. The pictures on this blog are part of that. I take pretty pictures of my sick body to boost my self esteem when I am having a difficult time seeing myself as a woman instead of a sick person. It is how I cope with my illness, and no one gets to judge how you survive your difficulties. So live on, and feed your souls.

Watch our story here:


~ Tonia

I have decided to relaunch my Facebook Page, The Beauty in Illness. Along with the help of two other rare patient advocates, we are hoping to include artistic stories of struggle and perseverence through creative ways. Please check us out and let us know if you would like to contribute!

Hospital Me THEN (2012)

Hospital Me THEN (2012)
Dance like no one is watching!

Hospital me NOW (2015)

Hospital me NOW (2015)
Dance like EVERYONE'S watching

Post Transplant-1 Year (March 2014)

Post Transplant-1 Year (March 2014)
Mi Amor Studio

Pre Dialysis Pinup Shoot (2012)

Pre Dialysis Pinup Shoot (2012)
Dynamite Dames

Mid Dialysis Boudoir (March 2013)

Mid Dialysis Boudoir (March 2013)
100 pounds, and a week from transplant, chest tube tucked into bra like a lady. ;)

Non-Pinup Me Now (2015)

Non-Pinup Me Now (2015)
This girl has four kidneys

Monday, December 31, 2012

The key to resiliency

I recently read an article in a dialysis magazine that really struck me.  It talks about a psychiatry professor at Yale who studies resiliency in people through different situations.  He discovered that people that recovered most effectively after significant traumas in their lives had a list of things in common.  His list really made me think about what has helped me get through my toughest times, so I thought I would share it with you and elaborate in my opinion.  If these things are missing in your life, think about how to add them and I assure you it will change your outlook when you know what hits the fan.

1.  Social support- I would say that this is really essential.  When you feel alone, you feel like the disease takes over those friendships.  Ask for help.  Tell your friends what you need specifically.  If you are lonely, tell them so.  A good friend will come visit or call the first chance they get.  A best friend won't need you to ask.

2. Optimism- This is the MOST important one to me.  Without this, everything is horrible.  I like to imagine that things aren't as bad as they seem.  Try focusing on the good things you get out of your situation.  For example, I am always saying that my disease has kept me in touch with friends I haven't seen in ages that would have totally forgotten me if I hadn't gotten sick.  Total silver lining.

3. Flexibility- I must admit I am weaker on this one at times.  I fight everything my doctors say if I don't agree or it isn't what I believe I need.  But at the end of the day, your life is GOING to change in a major way.  The more you make yourself adaptable, the easier the transition will be.

4. Faith- I believe there are many kinds of faith.  For some people this one is number one on the list.  For me it applies more as a faith in my doctors or faith in my own ability to do what needs to be done.  I believe in myself, which to me is very important.  At the end of the day, I feel I am the one that needs to do the work to stay alive.  But if you believe it is out of your hands and in someone else's, more power to you.

5. Core Value System- What do you look forward to doing when you get healthy?  What kind of person do you want to be?  For me, this involves how I choose to lie my life, and finding value in what I still am able to do.

6. Positive Role Models- Find others that inspire you.  My grandfather was the biggest for me.  He suffered from disease for years before he died and loved his family with more passion than I have seen.  He still influences me.

7. Physical Fitness- Find something your body can do, and get good at it.  It really helps to feel you can control your body in a positive way when there are so many things out of your control.  For me this is pole dancing, singing, theatre, and yes - Pinup photo shoots!

8. Cognitive Strength- This has kept me alive over and over and over.  STUDY YOUR DISEASE.  Don't allow yourself to coast on what your doctors say.  THEY DON'T TELL YOU EVERYTHING.  Sometimes, they don't tell you much.  DEMAND TO KNOW!  I would have died at least four times without this one.  My therapy is usually an idea I bring up to my doctor.  We figure it out together.  If I hadn't researched Iowa, I wouldn't be getting a transplant there.  I would be forced to do it in Oklahoma where they don't know my disease and are pretty unsure it will succeed.  I deserved better than that, and so does everyone.

9. Facing Fears- This was huge for me too.  I was overdosed by a nurse in the hospital once and I developed a huge anxiety around IVs as well as the drug she administered.  I had to go through therapy to get over this.  But I forced myself back to that hospital and back in that same vulnerable situation so that could face that nurse again and learn she wasn't going to kill me.  Having a chronic illness contains so many fears you need to surpass, they are impossible to count.

10. Finding Meaning in Struggles- What is the point of all this?  What am I getting out of all this?  What do I get when I come out on the other side of it all?  There is always some meaning.  It's not always a "God's Plan" kind of meaning either.  What did you actually learn from it?  And how can you help others in your same position when you are past it?  Don't lose sight of that meaning.

These ten things are so important to making it through.  And they don't just apply to illness struggles.  Losing a loved one or even events like divorces or job loss is similar too.  I lost a job I loved once, and it was actually harder than getting sick.  I wasn't prepared because I didn't think about what I needed to get past it.  All I could do was wallow in my anger at the people responsible.  Just like illness, blame doesn't really help.  Sure punch a pillow or two, but you need to move on and find a way to be productive.  Look to the future and get excited about the possibilities.  There are so many things to get excited about in this life if you focus on the good days.

(Reference book: Resilience: The Science of Mastering Life's Greatest Challenges-Charney/Southwick)

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