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)

Dialy-stress

Last night was rough.  Matthew and I did a treatment of dialysis, and everything was going fine.  We were just finishing up rinsing my blood back from the machine with saline when suddenly my heart started beating like crazy.  It felt absolutely insane and out of control.  It was like my hear thought I was sprinting but I was lying down.  My heart rate went from 80 to 140 in about five seconds, and my blood pressure also went from 128/93 to 175/115.

We sort of waited it out, holding the phone close just in case we needed to call 911.  I have never had heart issues before, so I was terrified I was having a heart attack.  But a couple minutes later my heart slowly started slowing down, and my blood pressure went down just enough for us to think it passed.  

We had studied every single situation that could happen in our training, but nothing like this ever came up.  We are afraid that now something could be wrong with my heart.  

As if that wasn't enough, after we finished up, my cat was yowling from the other room and pacing around the apartment.  When I watched her I noticed she was squatting over her litter box and not peeing.  We quickly ran to the computer to look up cat symptoms.  Everything we read said possible impacted bladder.  Emergency vet.  

We took the Baby Kitty to the vet, already shaken from what happened with my heart earlier.  It turned out she probably had a urinary track infection, but they kept her overnight.  She's a ten year old cat and I haven't had her go to the vet in 7 years.  She has been the only one in this house that seems to be perfectly healthy.  She's really my cat, and I would be heartbroken if anything happened to her.  We don't have kids.  Our pets are our kids.

My hero

I have to take a minute to post about my husband.  I would write about him all day if I could.

When we met the poor boy couldn't even stomach to come into doctor's offices with me, let alone hold my hand.  Sure he visited me in the hospital, but I am sure he didn't sign up for that when we met.  Since we had only been together for one healthy year before my native kidneys failed, year two was a huge deal for us.

But nearly ten years later he is brave and solid.  He has held my hand through the bloodiest procedures,  seen me through the worst steroid rages (shouting nonsensical profanity isn't the best way to spend your time with a loved one), and helped me deal with every near death experience causing post traumatic stress (when I was suffering paralyzing panic attacks after a nurse induced overdose, he would pull out my laptop and make me watch "Too Cute" on Animal Planet until I could breathe again).  Now he is my caretaker, nurse, and partner in my home hemodialysis adventure.  He helps me set up the machine (he knows all the functions and how to hook it up to the water supply and all that stuff I really don't understand), he helps me take blood, and he stays with me every day to make sure I am taken care of.  I suppose one could say that a husband was supposed to be there for "sickness and health', but I am pretty sure many men wouldn't have stuck around for some of this.  And I have NEVER heard one complaint from him about any of this.

And all sickness aside, we have so much fun together.  Hospital visits are agonizing, but we always find a way to make them entertaining.  Maybe some of that comes from our deep theatre culture.

Long story short, he's amazing.  He loves like no one I have met (not just me, everyone), and he is one of the funniest people I know.  I am so proud of the man he has become.  And he gives me the strength to be the best person I know how to be.  He's truly my hero and I am so lucky that he is in my life.

One step closer to transplant!

Great news!

Iowa told us there was nothing we could do before January 1st to move the transplant along because all of the blood work needed to be done there, but when I got in touch again to plan the January 9th visit they told me there were some test results they needed before then.

Great!

So I went to the Oklahoma Transplant Clinic and did some labs.  My coordinator Jeremiah told me he would send my whole file when the tests came back.

Also, he told me I was a much better recipient than we suspected.  My antibody percentage is only 44%.  I think this is the percentage of the population's antibodies I can't have from a transplant.  Every time I got a transfusion or a transplant or pheresis they were adding antibodies to my blood.  It limits the donation pool for me as this percentage goes up.  Since I have had upwards of 30 transfusions and plasma exchanges, we thought I was in trouble.  But it turns out I am only a 44% and I am an A+ blood type which makes me the best blood type for a recipient.

Some really good news!  Finally!!

Finally, a Blog!

A lot of people have begged me to start writing.  I simply couldn't get my head clear enough to start until now.  But when I looked through my files, I realized that I have been blogging for quite some time.  Many of the entries are scattered, and they aren't well written.  Some of them are drug induced, others are just facebook posts that I added.  But I think they show what happens to the mind when it is attached to a diseased body and fills with toxins.  The entries on this blog are unedited.

I would stay up all night because of the poison in my body.  Most nights I would numbly watch episodes of The Office a million times over and over just to turn off the nasty scared thoughts in my mind.  The anxiety comes at night and repeats haunting questions like, "Where is my life going?  What am I doing?  Are people forgetting me?  Will I ever get back to teaching?  What if I can't do theatre ever again?  Am I stuck in time while everyone gets to bound forward with their lives?"

Sick people are really either great or horrible to be around in my experience.  Either they draw attention to how awesome your life is in comparison to theirs and inspire you to suck it up and be a little more appreciative of your ability to wake up every day, or they make you feel guilty that you are healthy by reminding you how sick they are.  I have always striven to be the first kind of sick person.  I don't like to have a pity party (although I do like to party).  So I try to keep my Facebook posts positive so I can convince not only others, but maybe myself too, that everything will be ok and life is actually awesome at times.  Just really drink in those awesome times, because for me those rotten times could be right around the corner.

Matthew and I LIVE when we can.  I mean we suck the juice out of life.  We aren't ashamed of that outlook.  It makes the bad times ok somehow because we took advantage when we were able.  We got those tattoos we always wanted, we drank too much when we wanted, we told others we loved them when we wanted, we took that pole dancing class when we wanted, we made love when we wanted, and we stayed home and played computer games for days when we wanted.  We try to do things when we want to do them, and that way just in case something drastic happens we can never feel like we missed an opportunity.  And I honestly don't feel like I have.  I only feel jealous that I am missing out on the fun sometimes.

So anyway here it is, my first blog.  I have a lot of writing ahead of me!

Home at Last!

We did our first home treatment without Susie.  It went really smoothly.

The first time we transitioned into our apartment, I had a lot of anxiety.  I had a mini freakout when I thought blood was in a tube it shouldn't have been, but it turned out I was just seeing the machine from a different angle.

Our apartment has been pretty much taken over with medical supplies, and I feel bad for Matthew.  He has been so amazing coming to my training every day.  I didn't realize our cool sexy apartment would look like a hospital.  But it's only temporary.

I hid the boxes in different empty spaces around the apartment so that they wouldn't look so intrusive.  But our bedroom is not sexy anymore.  The day we get rid of this stuff will be a good day for the Campanellis house.

Supplies!!!

Dialysis supplies are in our apartment!!!  Two more weeks and we are on our own!