On my way to yoga class last Saturday, I kept thinking about ways to explain the feeling of the sheer exhaustion those with UC go through. It's one of those things in life that you can imagine but can't fully comprehend until you experience a day in that person's shoe. Kind of like childbirth.
The spoon theory explains this aspect quite well.
Here is a different take on it. This analogy of comparing fatigue and exhaustion to cell phones popped into my mind on my walk to the yoga studio while I was struggling with how to conceptualize tired. Practically everyone now has one. So its something most can relate.
At the start of the day a person with UC, like you, may start off with having 50% of their battery charged. Due to the bathroom trips at night and night sweats you did not get a well-rested sleep. When you begin the day, your battery starts running down like everyone else.
Showing posts with label My Journey. Show all posts
Showing posts with label My Journey. Show all posts
October 2, 2015
Optimism
It was about a year and half ago that I walked out of my doctors office diagnosed with Colitis. One of the strange things he said that stuck with me during the appointment was "You seem very optimistic." I'll admit... I was quite puzzled by his observation. Why wouldn't I be? I was finally seeing a doctor who could put a name to all the symptoms I've been suffering from. And he was prescribing medication to help me get better. I was on my way.
Little did I know how much worse this disease would get and how valuable optimism would become.
Little did I know how much worse this disease would get and how valuable optimism would become.
October 1, 2015
How to prepare for a Colonoscopy or Sigmoidoscopy
A colonoscopy and a sigmoidoscopy both examine the large intestine by inserting an instrument up the rectum. The difference being there is less bowel preparation for a sigmoidoscopy and it poses a lower risk of bowel perforation. The colonoscopy is a longer tube and may reach further than a sigmoidoscopy under local anesthesia.
What I learned from blood work
- ER doctors prefer the veins in your elbows.
- Stay hydrated to increase your blood flow
- Stay warm to increase your blood flow
- Request/Demand the butterfly needle if you have a problem vein
- Not all labs will accept all blood work forms (at least in Ontario)
- It is always best to go to a place where there is more than one nurse
- Saying ouch before the needle stabs you eases the pain
- Your veins will collapse if there is too much blood work done in a short amount of time
- Coordinate your forms so they are sent to all your doctors to avoid extra blood drawn. The lab may still lie and get 3 samples for 3 doctors for the same results.
- Losing blood is a big deal if you are already losing tons of blood on a daily basis.
- Stay hydrated to increase your blood flow
- Stay warm to increase your blood flow
- Request/Demand the butterfly needle if you have a problem vein
- Not all labs will accept all blood work forms (at least in Ontario)
- It is always best to go to a place where there is more than one nurse
- Saying ouch before the needle stabs you eases the pain
- Your veins will collapse if there is too much blood work done in a short amount of time
- Coordinate your forms so they are sent to all your doctors to avoid extra blood drawn. The lab may still lie and get 3 samples for 3 doctors for the same results.
- Losing blood is a big deal if you are already losing tons of blood on a daily basis.
September 30, 2015
Navigating the Health Care System
It's not just you and your doctor. It's a little more complicated than that.
Winning half the battle is about knowing the rules of the game. Having had close to zero exposure to the health care system prior to my UC diagnosis was a big disadvantage. Learning how to navigate left me more exhausted and defeated on top of the struggles with my UC symptoms. These are some of the things I wish I knew earlier.
Winning half the battle is about knowing the rules of the game. Having had close to zero exposure to the health care system prior to my UC diagnosis was a big disadvantage. Learning how to navigate left me more exhausted and defeated on top of the struggles with my UC symptoms. These are some of the things I wish I knew earlier.
The Positives from Living with IBD
There are so many ways UC has made me a stronger person.
- Resilience
- Determination
- Wisdom
- Perspective
- Empathy
- Better self awareness
- Better sense of humor
When you are down, always remember the colour in which you see the world may not be its true colour. That colour may be a completely different colour from what someone else sees. It's a colour from your own perspective. We don't know what we don't know.
Any problem is as big as how we perceive it. Try to see it differently. Try to take tiny steps to change the negative energy into positive ones.
Don't have expectations from anyone, not because they are bad people. But simply because it's IMPOSSIBLE for the world to behave the way you expect. Stop worrying about who cares for you and who doesn't. Focus on taking care of yourself.
I felt so much more at peace during my most difficult days.
I did not gossip.
I did not complain.
I did not suppress my feelings.
I did not care at all about what others thought.
I listened to my own body.
I was grateful for the little things.
I found silence soothing.
I am who I am not because of what I do or what I have.
Be productive not busy
Don't take things personally: Someone's opinion is about them not me
August 16, 2015
Remission
What a sweet feeling :)
No more feeling tired all the time.
No more spending endless hours in the bathroom.
No more blood in the toilet.
No more ankle pain, knee pain, back pain.
Taking asacol 2 800mg 2x daily.
Taking humira injections every 2 weeks.
After being diagnosed with a chronic illness. I thought life would never be the same.
Didn't think I would be able to eat out anymore.
Didn't think I would have a social life again.
Didn't think I could have a pain free life.
But with this -
the word being "grateful" took on a new meaning.
Grateful for health,
Grateful for life,
Grateful for family,
Grateful for friends,
Grateful for being young.
May 13, 2015
September 17, 2014
September 15, 2014
Be proud of my simple accomplishments
Too many inspiring stories...and not realistic for the ordinary folks.
1. I'm thankful for not seeing clumps of hair on my pillow waking up in the morning.
2. I'm thankful for not running to the toilet 8 times a day.
3. I'm thankful for going to the toilet just to pee.
4. I'm thankful I can stand up to shower.
5. I'm thankful I am not itchy from rashes everywhere.
6. I'm thankful to say goodbye to moonface and acne.
7. I'm thankful I can walk up the stairs without catching my breath.
8. I'm thankful I can walk without knee pain.
9. I'm thankful I dont wake up in the middle of the night drenched in sweat.
10. I'm thankful to pass gas.
11. I'm thankful to be able to swallow pills.
September 9, 2014
What makes you feel beautiful?
Today I looked in the mirror and smiled. It's the little things like
1. Plucking my eyebrows.
2. Humming that familiar song. Lately its been "Blessings, By Laura Story"
3. Not replying to people's messages.
4. Watching a TV show during the day.
5. Having a good hair day. My hair is growing back and not falling as much.
6. Finding support. Even if its from the internet.
Colitis is a process.
There is no quick fix.
Learning to accept it as part of me.
You are stronger than you think. ALWAYS.
Don't EVER doubt yourself.
1. Plucking my eyebrows.
2. Humming that familiar song. Lately its been "Blessings, By Laura Story"
3. Not replying to people's messages.
4. Watching a TV show during the day.
5. Having a good hair day. My hair is growing back and not falling as much.
6. Finding support. Even if its from the internet.
Colitis is a process.
There is no quick fix.
Learning to accept it as part of me.
You are stronger than you think. ALWAYS.
Don't EVER doubt yourself.
September 8, 2014
Lifestyle Changes
1. Can not travel with a pack and go attitude.
Will plan trips in advance and savor each destination.
2. Can not order from a menu depending on what I want to try. No longer a restaurant foodie.
Will plan out my meals and choose homemade healthy options.
3. Can not consume alcohol.
Will drink water and have a good time.
4. No longer as strong physically.
Will work on maintaining a healthy body through zumba, yoga, and swimming. Avoid endurance sports as sensitive to changes in electrolyte.
5. No longer stress over work related issues.
Will work on building relationships instead.
6. Can not always please others.
Cherish true friends. Accept those who love you may not understand you. Find support.
7. Can not think so lightly about health.
Take medicine and supplements on time. Eat my meals slowly. Chew my food.
Will plan trips in advance and savor each destination.
2. Can not order from a menu depending on what I want to try. No longer a restaurant foodie.
Will plan out my meals and choose homemade healthy options.
3. Can not consume alcohol.
Will drink water and have a good time.
4. No longer as strong physically.
Will work on maintaining a healthy body through zumba, yoga, and swimming. Avoid endurance sports as sensitive to changes in electrolyte.
5. No longer stress over work related issues.
Will work on building relationships instead.
6. Can not always please others.
Cherish true friends. Accept those who love you may not understand you. Find support.
7. Can not think so lightly about health.
Take medicine and supplements on time. Eat my meals slowly. Chew my food.
July 29, 2014
July 11, 2014
Diagnosed? Now what.
So you have Ulcerative Colitis. Your gut has failed you and started attacking itself. Now you are spending a lot of time in the bathroom, running to the bathroom, or thinking about going to the bathroom.
You take the drugs prescribed by your specialists then you'll get better right? Not exactly. Unfortunately there is no magic pill or shot that will "cure" colitis at this moment. However there are many drugs out there that can reduce the inflammation in your colon to help bring you into remission.
I have been on Asacol and Prednisone since my Hospital visit in April. And these drugs have effectively brought me the relief from the symptoms of UC. Prednisone is a steroid drug that should not be taken for prolonged periods due to the negative side effects. I experienced moon face, acne, skin rashes, muscle cramps, hair loss, and joint pain while on prednisone. For others symptoms may differ or not be effective at all.
During remission, pay close attention to the foods you eat. Cook your meals and monitor if any foods make your symptoms worse. (Ex. coffee, sugar, greasy foods)
Update: Prolonged use of Asacol changes the colour of your urine into this purple/blue residue. Makes cleaning the toilet so much more painful due to backsplash.
You take the drugs prescribed by your specialists then you'll get better right? Not exactly. Unfortunately there is no magic pill or shot that will "cure" colitis at this moment. However there are many drugs out there that can reduce the inflammation in your colon to help bring you into remission.
I have been on Asacol and Prednisone since my Hospital visit in April. And these drugs have effectively brought me the relief from the symptoms of UC. Prednisone is a steroid drug that should not be taken for prolonged periods due to the negative side effects. I experienced moon face, acne, skin rashes, muscle cramps, hair loss, and joint pain while on prednisone. For others symptoms may differ or not be effective at all.
During remission, pay close attention to the foods you eat. Cook your meals and monitor if any foods make your symptoms worse. (Ex. coffee, sugar, greasy foods)
Update: Prolonged use of Asacol changes the colour of your urine into this purple/blue residue. Makes cleaning the toilet so much more painful due to backsplash.
July 10, 2014
Interesting video on autoimmune diseases
Dr Randall Tent a naturopath practicing in Novi Michigan gives an interesting talk on the Autoimmune Epidemic.
https://www.youtube.com/watch?v=r8FCJ_VPyns
https://www.youtube.com/watch?v=r8FCJ_VPyns
July 2, 2014
Consideration for squatting toilets ....
http://www.toilet-related-ailments.com/crohns-disease.html
Who else squats on the sitting toilet? *raises hand*
Who else squats on the sitting toilet? *raises hand*
June 24, 2014
Being angry is drinking poison and expecting the other person to die.
You know the feeling where you just want to make excuses for everything thats going wrong in your life, because everything is falling apart. But you are mature enough to see that blaming and pointing fingers isn't really going to solve your problems. But you have no other good way to channel your anger and frustration? Yeah. This is how I'm feeling these days.
I'm frustrated with ulcerative colitis.
I'm frustrated with ulcerative colitis.
June 20, 2014
Canadian vs US Health Care
Having been healthy for most of my life, I can tell you that hospital and doctors are not my area of expertice. Recently due to ulcerative colitis and car accident I have visited several emergency rooms/hospitals in the past 2 months. Below are my thoughts on the health system in Canada and the US.
May 20, 2014
Healthy Self
This past Saturday, I attended a one day seminar held by Eleanor Payson (author of Wizard of Oz and Other Narcissists: Coping with the one way Relationship in Work, Love and Family) on Discovering the Healthy Self.
The main takeaways from the day for me were:
-Self Healing is the most important thing you can do for yourself
-Forgiveness is an ongoing process and very difficult
-There are many seemingly normal people out there struggling
One story that stood out was the example of the child who fell off their bike. What should the parents actions be when you see your child fall?
1. Give the child a hug. This will show the child you empathize with their feelings because it feels pretty bad to fall.
2. Encourage the child to get up.
3. Make sure they are okay and learn from their mistake so it will not be repeated.
This can be applied to all sorts of scenarios in life. All we need is a bit of empathy and encouragement to get going again.
The main takeaways from the day for me were:
-Self Healing is the most important thing you can do for yourself
-Forgiveness is an ongoing process and very difficult
-There are many seemingly normal people out there struggling
One story that stood out was the example of the child who fell off their bike. What should the parents actions be when you see your child fall?
1. Give the child a hug. This will show the child you empathize with their feelings because it feels pretty bad to fall.
2. Encourage the child to get up.
3. Make sure they are okay and learn from their mistake so it will not be repeated.
This can be applied to all sorts of scenarios in life. All we need is a bit of empathy and encouragement to get going again.
April 15, 2014
UC ER Diary
It was my plan to stay at home and just rest up. But I did not seem to get any better and so my mom told me I needed to see a doctor. At Hope clinic they were very concerned and instructed me to go to the Emergency room. I am one of those people that will avoid seeing a doctor if possible and disliked others for exaggerating their symptoms. Hearing from a doctor telling me I needed to go to the emergency room was surprising. I always thought the ER was reserved for those who really needed help. I was still able to walk, was the ER really necessary I thought.