If I Had An Unlimited Amount Of Energy

For me it isn't about having more time in the day.  In fact there are many times that I don't sleep at night giving me that extra time that is often needed.  What I need is more energy.  I am always tired and fatigued.  I can't sit down and watch TV without falling asleep.  If I stop moving, it is next to impossible to start again.  So if I had more energy this is what I would do.

1. Play more with my cats.  I love all my cats to death, but I feel I neglect them sometimes.  Besides cuddling together I don't spend much time with them.  I would love to play with them with all the cool interactive toys I have bought for them.  Instead I grow tired and they usually end up bickering between each other like human kids.

2. Catch up on my TIVO.  As I said I cannot watch TV without falling asleep.  This makes watching television shows that I DVRed next to impossible.  My husband and I are 3 weeks behind on all our favorite shows, so please stop posting or talking about them.

3. Clean my house. Cleaning when you feel like you're moving through mud is HARD.  I usually end up just doing the minimal required to make things look good.  My house needs a deep clean.  I am a neat freak and this drives me absolutely crazy.  I would love to start in one room and tear everything apart, clean it, and put it back together again.

4. Remember things.  I am so forgetful.  I blame this on being tired; so tired that I can't think straight.  If I had more energy I wouldn't forget all the little things.  Things like my keys when leaving the house, groceries at the grocery store, or what I came upstairs for.  I also wouldn't forget some big stuff too like the concert tickets on my way to a show making me buy a second set.  My forgetfulness is costing me money.

5. Spend more time with my friends.  Unfortunately, my friends get put on hold because I'm tired.  With the all errands, working, cleaning, and other responsibilities of being an adult, my friends usually get left behind.  I would like to get together with my friends more often.  It would be nice to go out in the evenings or spend a day shopping, but these things require energy that I don't always have.

This is an improvement from where I was just a year ago.  Then it was a struggle to get through the work day or spend any time with my husband.  I never worked out making me feel even more fatigued.  My energy levels are slowly increasing, but I am still not where I was before UC.

Time To Clean Out The Fridge

When I tell someone that I no longer have a colon they often ask what it is I eat.  The thing is is that it's not much different than when I was a healthy young teen before Ulcerative Colitis grabbed hold of me.

Shelf 1: You can see the top shelf is full of some colorful bowls.  I am making a cake for my mother-in-law's surprise 60th birthday party.  I can talk about it here because she doesn't get on the Internet.  I'm not a good baker, but I love decorating the cake.  It is a great stress reliever.  In the red container is a large bowl of stuffing for my husband's Thanksgiving left overs.  He can't leave home without it.

Shelf 2: This isn't as full as it usually is because of recent party nights, but this is our liquid shelf.  It is mostly my husband's drinks because I like my drinks at room temperature.  It's hard to see, but the whole back of the shelf is beer.  Like I said it's a little empty.  The front has my husband's creamer and Gatorade; two things I cannot stand.  And there is the always present salsa.

Shelf 3: More drinks and staple items.  This is the shelf with the tall drinks.  You can see my husband's ice tea and an unfinished water of his.  You can also see my almond milk in which I take the VSL#3DS located right next to it.  There are two more boxes behind it.  Next to that is some butter and some regular low fat milk behind the drinks.  I only use the low fat milk for cooking or the icing located on the top shelf.  I can no longer drink cow's milk without lots of gas and trips to the potty.

The Drawers:  These are also pretty empty.  One side has some left over apples from my husband's lunches. The other side is cheese sticks which are a great quick snack for me.  My pouch loves cheese, and it is something I hated prior to surgeries.  Goes to show sometimes tastes change with surgery.

The Door: I love condiments, so the door of the fridge is always full.  There are lots of dressings and marinades for meats to make them more tender.  There is hot sauce and horseradish because I like things spicy even after my takedown.  There is also a huge container of Parmesan cheese for my husband who eats more cheese than spaghetti on his spaghetti dinner.  The best thing is the bottle of Victory's Red Thunder beer.  A limited release beer released on Wednesday that combines a porter and red wine.  Yummy!

The Freezer: What's in the freezer is not that interesting mostly because it's usually pretty empty.  I have some gluten free waffles, some left overs that will never be touched, and some frozen meats for another day.   The interesting thing is what's on the front.  I never used to put stuff on the front of the fridge, but recently I've started.  There is our weekly menu and important phone numbers.  Mostly so my husband knows what to expect, but partly for me because I'm always forgetting what I bought to make for the week.  There is my gym schedule and recycling rules.  I didn't know recycling could be so difficult.  Then there are pictures of some people important to me.  Some people might recognize a picture or two.  There are also an unisperational picture from my inspirational kitty calendar.  It was too funny not to keep.

So now you see what's in my fridge and an opening into a little more about me.

Giving Thanks

It's Thanksgiving and there is nothing more appropriate than to write about what I am most thankful for.

1. My Health: I am always thankful for when my health is good.  I never now when the next flare will come and I will feel horrible.  So I never take a good health day for granted.  It is usually something that people learn as they grow older in life, but thanks to this disease I have been fortunate to learn it early on.

2. My Family: Without my family's support I don't think I would have been able to get though the last 10 years.  They have always been my rock to lean on.  They have supported my through hospital visits, through times when I couldn't be there for them, and never grew tired of me.

3. On-Line Support Groups: J-pouch surgeries are not easy to get through.  It is both physically and mentally draining, and there are not many people you can turn to that have gone through it themselves.  I was lucky enough to have the surgery in a day and age where everything is on the Internet.  I have found wonderful people who have supported me in low times both on facebook and j-pouch.org.

4. My Friends: I have great friends that never grow tired of me talking about poop.  At least they don't say they do.  I am able to be frank with what I am going through without feeling embarrassed.  My friends have never treated me differently for my disease.

5. My Boss: I have a great boss.  He was supportive of what I was going through, and gives me time off for doctor's appointments.  I was given long leaves for hospitalizations with full pay.  Even though he doesn't understand exactly what the disease is, he still asks questions.  He doesn't let my illness define me and my ability to do my job.

Getting Through J-Pouch Surgery Without Losing Your Mind

There is no doubt that our mental health is tied to our physical health making it even more of a reason to focus not only on the physical body, but on our minds as well.  This is especially true during the long recovery of the j-pouch surgeries.  Many surgeons make us aware of the long path we will face, but we never truly appreciate how difficult it is until we are in the throws of it.  Here are my tips on how to cope with j-pouch recovery or any other long term health problem.

It takes a full year or more to get back to a sense of normality after the surgeries.  So why are we measuring our progress in days or weeks?  Early on the pouch is a volatile creature.  How it will react to something one day will be totally different than how it will react the next.  It can be very frustrating to newbies who are trying to learn the ropes.  The key is to keep trying new things and never totally cross something off the list.  Also measure your progress in months instead of days and weeks.  You will be sure to notice the improvements then and not be discouraged.  The number one thing I tell people as they go into the takedown surgery is to pack your patience.  You will need it.

Maintain a positive outlook by treating yourself.  It's important to take care of yourself during the difficult recovery.  Treats can come in many forms, and can be done no matter where you are on the recovery plane.  It can be something as simple as having someone wash your hair when you still can't do it for yourself to planning a vacation for the future.  Some of the things I did were paint my nails (something I don't do too often), bought a new outfit, and have some ice cream.

Get out of the house!  This can be very intimidating soon after surgery whether it's your first time with the ileostomy or learning your new plumbing with the j-pouch.  Start slow.  I remember when I came home after my colectomy not being able to leave my house because everyone worked during the week and I couldn't drive.  So just getting outside and walking up and down the block felt so nice.  I was only outside for about 5-10 minutes and I never went far from the house, so this is a great first step for someone who is scared of leaks or accidents.  As things progressed, I had a friend take me shopping.  I started with short trips then stayed out longer and longer as I felt more encouraged.

Relieve some stress.  What are your favorite stress relievers?  Stock up on them pre-surgery and keep them close by throughout your recovery.  Stress relief for me was as simple as watching trash TV, listening to music, playing with my kitties, and taking a nap.  Have a list close by so when your feeling like your on the brink you can have a reference map.  Sometimes it's hard to find ways to relax when your at the height of insanity.

Use your friends and family.  This was a hard one for me because I don't like to rely on other people.  But letting others cook you dinner, drive you around, get things for you when you have a hard time moving on your own.  Talk to them.  Share what you are going through.  It feels good just to get what is on your mind off your chest.

And don't forget to allow yourself to feel bad sometimes.  Many of us try so hard to cover our feelings and stuff down the pain.  It's good to let it out.  Have a cry or two or three.  It helps to let it out and move on instead of choking it in until you can't anymore.  It's okay to get down sometimes, but don't let it keep you down.  Remember: You will get through this and see the light at the end of the tunnel.

If I Had To Do It All Over Again

I do not live with regrets.  Regret is a four letter word.  Yeah I know it's six, but it is a foul word that I never use in my vocabulary.  Regret means you wish it never happened.  Every mistake I have made has had a purpose in my life, and I do not wish it never occurred.  Instead I have grown from them and they shaped me into who I am today.

However, there are things I would change if I could.  One of those things is something I still do to this day.  The one thing I would do if I could do it all again is listen to my body.  I can be very stubborn when I want to be, and I am most stubborn with how I feel.  I have a huge phobia of being portrayed as weak, so I carry on acting normal no matter how sick I may feel.  This has got to change.

I learned to ignore cues from my body long ago.  It intensified when I became anorexic because I did not want to listen to the hunger cries.  Ulcerative Colitis also had it's hand because I wanted to ignore the pain and the fatigue.  I would push through each signal my body gave me just so that I could do what I wanted to do despite the consequences.  Each time I continued through the screams I found myself in the hospital.

I remember clearly the summer of my last flare and the beginning of the end of my colon.  I could feel myself getting weaker and weaker.  I could see myself turning white as a ghost.  I could no longer eat without pain and finding myself living in the bathroom.  Fevers would come each night leaving me shivering in the peak of the summer.  Yet I continued to work 12 hour days doing my full time job during the day and showing houses in the evenings.  I couldn't say no.  I remember how tired I was on the 4th of July going to picnics and refusing all foods except for the safest, smallest amounts.  Then I had a routine doctor's appointment that ended up changing my life.  Soon as my GI doctor walked into the exam room he said to me, "Which hospital are you going to?"  My husband had predicted it that morning when he said, "I'll see you later tonight in the hospital".  Everyone could see it but me.  I eventually had three hospital stays that year, and I never slowed down.

And I still haven't learned.  I still run myself ragged ignoring everything my body is telling me.  I still work long days, volunteer, go to the gym, and have time for my friends and family whenever I can fit them in.  I don't stop from the time I wake up to the time I crash.  I run myself so hard that I can't even sit down to watch TV without falling asleep.  I know this is my body telling me to slow down, but I can't stop myself.  I am trying to listen because I know what the end is if I don't.  If I could do each day again, I would make myself sit down and relax.  There is nothing more important than my health.

Life, Death, And The Stuff In The Middle

It is something philosophers have pondered for ages; the origins of life, what happens after death, and why the stuff in the middle?  We all have our own thoughts on the issues stemming from the paths our lives have taken.

Life is a curious thing.  Why is there life?  Why do humans think and reason?  The fact of the matter is I don't really care because we do.  I am happy I was granted life and happy of everyone else's life as well.  Life to me is a treasure.  It is fragile and sacred.  It is something to never be taken for granted.  You never know when it will leave you.

Death on the other hand fascinates me even more.  The body is so resilient and yet so delicate at the same time.  What kills one will not kill another.  I am enthralled by this and love to delve into the aspects as to why someone ultimately passed on.  Maybe I should have been a mortician.  We can go into what happens after death, but this is a personal matter.  I don't care what you believe or how our beliefs differ, what matters is that your belief brings comfort to your thoughts about death.  Because no matter how much we try to avoid it, death will find us.

Now about the most important thing and that's what happens in between the moment of life and our ultimate death.  One thing I have been working on is living in the moment.  We can't change the past and can't predict the future.  All we can have semi-control over is what we are doing, thinking, feeling in the moment.  I have been trying to embrace the moment by staying true to my feelings, not worrying about what might happen next, or regretting what decisions I have made it the past.  What little improvements I have made on this has allowed me to be more open minded .  Most of all it has allowed me to love the stuff in the middle more.

I Want To Change THIS About Healthcare

I could get on my high horse for this post and speak about making sure everyone has adequate coverage, but our country seems to be making strives in this.  So I am going to speak to another thing that I would love to change.  I would love to bring compassion back to healthcare.

OK, so I'm still on my high horse.  For profit health care has made it impossible for doctors to spend enough time with their patients to make a connection.  Instead the doctor is forced to stick to a schedule that hardly leaves enough time to properly diagnose the patient never the less make a connection.  So what's so bad if a doctor and patient don't have a connection you ask?  A lot when the patient has a chronic illness.

Patients are less apt to open up to a doctor when they don't feel a bond.  When the patient suffers from a humiliating disease like Ulcerative Colitis it can make disclosing important information very difficult or impossible.  How can you talk about blood in your poop or even pooping your pants when you have only spoken five words with someone?  How do you bring up leaking  poop from your vagina or pain in your testicles when you feel the need to poop as your doctor is walking out of the office to the next appointment? The answer is you usually do not.  Symptoms go by without discussion.  Doctors do not get the full story and the patient continues to suffer.

Another thing a doctor should do for his patient is advocate.  There are many cases when the insurance companies deny patients coverage that is necessary to their health.  It is the doctors job to step in and prove to the insurance company that the patient needs the drug, needs the extra stay, or needs extra visits.  Without  the connection the doctor is more apt to let the insurance company dictate care.  A doctor will fight for the patient when he's invested in the patient's well being.

I have had both kinds of doctors.  I have had the sympathetic, kindhearted doctor and I have had to cold, unfeeling doctor.  They both were well skilled in their specialties, but there is one I will never go back to.  There is one that misdiagnosed me because he would not spend the time to listen and care.  There was also the other who I told my deepest and darkest secret to first.  The one that fought for the best treatments available to me.  This is the difference.

It's time healthcare took just as much time on compassion as it does on a diagnosis. More time needs to be spent on psychology and sociology in medical school.  More time needs to be allowed during the office visit to give the doctor a chance to delve into the patient's life.  This will change the future of healthcare.