The Cruel thing the Chronically Ill Do To One Another

Yesterday, there was a heated discussion in a forum about how not everyone’s pain was the same. Some people were accusing other people of complaining about pain that really want all that bad and it reminded me of a story I had heard about two best friends: A and B.

A had been verbally abused growing up. Her parents had called her ‘fat’ and ‘worthless’ To even talk to her father,  she had to catch him on a good day.

This annoyed her best friend B. B had witnessed her mother be physically abused.  She had been in and out of foster care homes and eventually was raised by her aunt and uncle who provided a calm,  but emotionally distant home.

B thought,  ‘I would love to have had A ‘ s life. How can she complain? ‘

It caused a riff began the two girls.  Eventually the parted ways.

A few years later, B ran into a good friend who asked how A was. B told her friend about how she had grown sick of hearing A complain about her life.  It had been easy in comparison to her own.

To which the friend responded, “But her life was hard too. The point isn’t about who had a harder life. You both were in pain and could have been a support for one another.”

The Fire

Friday night there was a fire at the camp where S and I are getting married. The building was a dormitory.  The building was over 250 years old.  It is not one we would be using for the wedding.  And thankfully the wedding is more than 22 months away. 

However, it delays getting a jump start on nailing down some of the big picture items for the wedding.  We were planning on going to meet with the camp,  but we need to be on their back burner right now which is completely understandable.

My Botox is starting to wear off which is unfortunate.  It makes me wonder if this will work for me. I have only had about two weeks of complete relief.  Though I have heard it can take up to three rounds to be in full effect.

I have had a migraine for five days. I woke up this morning with this sheer feeling of’Blah.’ I attempted to get back to sleep,  but it didn’t work.

Unfortunately,  S’ s leg is still quite swollen and I have to do the grocery shopping and get my meds today.  As I don’t drive, this requires quite a bit of walking.  I woke up with only half a spoon today and now I have about three.  I also need to cook us dinner tonight.

The Brain Gut Connection

The two illnesses that I suffer from the most are IBS and chronic migraines.  There are some illnesses that are comorbid, they go together, migraines and IBS is an example.  A doctor once clued me into something called ‘The Brain Gut Connection’  He said that the same neuroreceptors, opiod receptors, are found in your brain and stomach.  To simplify this think about how caffeine affects the stomach.  it makes the stomach jittery as well as the brain.  Or think about how when you are anxious, you feel butterflies in your stomach.

Before IBS started controlling my life, I would only have an attack when I was really tired or really anxious.  I loved to travel, but travelling made me nervous which always made travelling fun.  Somehow I still enjoyed it.  Between the bathroom breaks, bracing myself for the half hour to an hour or taxiing and taking off and running frantically from airport bathrooms to the plane before the gate closed was enjoyable.  It really isn’t a wonder I’d always lose something when travelling.

Your stomach is like your second brain.  Scientists refer to it as your entric nervous system (ENS) The ENS is comprised of two thin layers of more than 100 million cells that line your esophogus to rectum.  This affects not just digestion but mood and even cognition.  Thus making it more apparent why IBS and migraines would travel together.

These cells do not allow us to do conscious processing like balance a checkbook or math homework, but it does communicate with our brain.  It’s main function is to control digestion.

People with IBS are known for having mood shifts.  For the longest time, doctors believed that mood was causing IBS.  If you were anxious, you’d need to use the bathroom, but the relationship goes both ways.  People with IBS can be anxious because of a problem with the ENS.  This could explain why a higher amount of people with IBS have anxiety.  I am on an anti-depressant to control my stomach symptoms. It helps some. The dose is much lower than it would be if it were controlling mood.  This same med is used for migraines.

As doctors learn more about the ENS connection to the brain, the more they find treatments for IBS such as antidepressants, hypnotherapy and cognitive behavior therapy (CBT). CBT can help improve the communication between the brain and ENS.

More research needs to be done to understand the relationship between IBS and cognition bryyrt. I should see if I can somehow connect with a study to show them.  I can definitely tell that’s true.

Here is a link to the connection from John Hopkins
http://www.hopkinsmedicine.org/health/healthy_aging/healthy_body/the-brain-gut-connection

What Not to Say to Chronically Ill

As I struggle today with a migraine that makes my left eye hurt when I move it, I think about something someone recently said to me.  ‘You are lazy. That’s why you don’t work.’  Thankfully, a few people who know my condition better rushed to support me.  I am lazy when it comes to house cleaning. I am lazy-ish when it comes to exercise, but when it comes to my job and working no one would call me lazy.  Since I have stopped working I have been selling educational products.  I now make a profit of about $100 a month which seeing I have no expenses really – is quite nice.  The day of my balloon catheter as soon as I could sit up, I was working. I am not even exaggerating.  I LOVE teaching.

So I’ve decided to compile a list of things you shouldn’t say to chronically Ill.

1. “You are lazy!”
If you are judging them solely on how many things they got checked off on a To Do List, compared to someone that is healthy than that’s like watching a man who is disabled run against someone who isn’t and saying the disabled man is slow.  People with chronic illnesses don’t choose not to work because they are lazy but because they can’t – due to illness or maintaining health. When I was working, I felt stressed trying to make doctor’s appointments and work to the point it was taking a toll on my health.

2. “It’s not that bad.”
How do you know?  Have you felt the pain? Have you walked in that person’s shoes?  How would you feel if someone said that about some pain in your life?  It shows a lack of empathy.

3. “I know someone who had it worse than you and they could do what you can’t.”
Don’t compare one person’s pain to another.  You aren’t a doctor.  And even doctors get it wrong sometimes.  Also there may be other factors physical or emotional complicating an illness.

4. “You should lose weight.” “You should drink more water” “You should go to bed earlier.”
If you aren’t the person’s doctor, you shouldn’t be telling them what to do.  Also sleeping more, drink more water and losing weight may help but they won’t eradicate the illness.  There illness is real.  And likely you don’t know a lot about it.  If you want to help, read about it.

5. “Your life is so easy. You don’t have to work.”
I have heard this and rarely has the intention been bad.  If by easy you mean, visiting the ER FIVE times in three months, dealing with a headache, having to be on a strict diet or my gut explodes or being too tired to see friends most days – then yes – my life is really easy.

6. “Your still in pain?” “Why don’t you ever feel good?”
Chronic means ALL THE TIME.  I wish that I could wake up one day and know that my illness is behind me.  That’d be quite wonderful, but sadly that’s not the case. I have good days and I have bad days.

7. “You’re too young to feel that bad.”
I often sing a Garth Brooks line to myself, “Much too young to feel this damn old.” to myself.  I agree.  I am too young to feel this sick, but that sadly doesn’t change my situation. I am sick!

8. “God doesn’t give you more than you can handle.”
Well, while i am honored that God has so much faith in me to handle this, I wish he didn’t.

9. “You need to get right with God.”
That’s a bunch of crap! I believe in God, but this is a broken world and bad things happen.  One of those bad things is my illness.

10. “It’s all in your head,”
This is probably the worst thing to say. It’s like telling the person flat our that they are a liar.  Also, it messes with the person’s head and delays medical care that they may need.

So what CAN you say: (the top was feeling much to snarky so needed a positive turn)

1, “You look good, but how are you really feeling?”
You are complimenting us (even if we don’t believe it) and also acknowledging that looks don’t always indicate how a person is doing.  For once, we’d like someone too look beyond our facade.

2. “I’m going out. Do you need anything?”
While it may be easy for someone who is healthy to run to the store, it’s not so easy for the chronically ill.  It could save them not just time but a lot of stress and anxiety and maybe even some pain.

3. “It must be hard to be sick and in pain all the time. ”
It shows understanding.  We don’t feel judged either.

4. “Do we need to stop visiting so you can rest?”
Personally, I would feel like I was dying to hear this but at the same time there is a great thing about this.  My stomach might be kicking up and I’m waiting for you to leave, but I’m not going to tell you that.  It allows me to excuse myself.  Sometimes – especially if S is around – I’d love to be able to run to the bathroom and come back as many times as I’d like.

5. “Don’t feel bad if you have to cancel plans.”
My best friend, M. is so patient and understanding when I say I will visit and I can’t.  She makes me feel better about the fact that I’m not always up for visiting.

6. “Would you like to hear about me?”
I would love to know what is going on in your life. These four walls get boring some times and why wouldn’t I want to hear about you. You are my friend.

7. “I hope you are as well as possible.”
This acknowledges that fact that I have a chronic illness while still wishing me well.

The Accident

I was walking across the parking lot at my sister’s baby shower  talking to Little S (my niece) and N (her sister) thinking to myself, ‘I haven’t felt this good in awhile. ‘

I felt so good that I started playing on the playground with Little  S and N. I was climbing on a wall with holes between two platforms when I thought, ‘Maybe this is a bad idea. ‘ so I got off.

Little S asked me why I got off the wall.  I said my feet were too big. She laughed,  “My feet are bigger than yours (she’s 9 but has bigger feet than me and is almost as tall as me). You mean your feet are fat.”

I started laughing. And as I did, I stepped back and fell off the platform landing on my back with a crack.  I then fell forward and slammed my head on the pole.

It hurt, but I had to shake it off (Taylor Swift is now playing in my head) Didn’t want my nieces to know that it hurt.

Yesterday night I was achy,  but I went to physical therapy and I am okay. Sore, and bruised but nothing more. The physical therapist thinks I just cracked my back like she does. 

I would say that I am in a good stretch if it weren’t for the fact I had quite a big IBS flare up last Friday night.  I couldn’t enjoy most of the yummy food at the shower Sunday.  I ate some fruit, vegetables,  pita chips and shared a cupcake with S (my fiance).

On Saturday, I ate only grains (which don’t bother me) and replenished with Powerade. I wouldn’t recommend grains for most people with IBS after a flare up, but I would recommend eating something bland that is safe and fairly easy to digest for them.  Maybe soup or rice.

Today I was able to finally return to eating normal.  Most of what I ate was FODMAP friendly. 

It’s Been a Few Days

I was walking across the parking lot at my sister’s baby shower  talking to Little S (my niece) and N (her sister) thinking to myself, ‘I haven’t felt this good in awhile. ‘

I felt so good that I started playing on the playground with Little  S and N. I was climbing on a wall with holes between two platforms when I thought, ‘Maybe this is a bad idea. ‘ so I got off.

Little S asked me why I got off the wall.  I said my feet were too big. She laughed,  “My feet are bigger than yours (she’s 9 but has bigger feet than me and is almost as tall as me). You mean your feet are fat.”

I started laughing. And as I did, I stepped back and fell off the platform landing on my back with a crack.  I then fell forward and slammed my head on the pole.

It hurt, but I had to shake it off (Taylor Swift is now playing in my head) Didn’t want my nieces to know that it hurt.

Yesterday night I was achy,  but I went to physical therapy and I am okay. Sore, and bruised but nothing more. The physical therapist thinks I just cracked my back like she does. 

I would say that I am in a good stretch if it weren’t for the fact I had quite a big IBS flare up last Friday night.  I couldn’t enjoy most of the yummy food at the shower Sunday.  I ate some fruit, vegetables,  pita chips and shared a cupcake with S (my fiance).

On Saturday, I ate only grains (which don’t bother me) and replenished with Powerade. I wouldn’t recommend grains for most people with IBS after a flare up, but I would recommend eating something bland that is safe and fairly easy to digest for them.  Maybe soup or rice.

Today I was able to finally return to eating normal.  Most of what I ate was FODMAP friendly. 

What’s Your Story?

This blog post is interactive. I will tell you my story and I hope that my followers who have a chronic illness will want to share their story as well.  Here are 10 questions I commonly get about my illness?

1. How are you feeling today?
This is a good question to ask someone with chronic illness. It shows a genuine interest.  Today I’ve been dealing with more IBS issues and not many chronic migraine issues (though some).  I was able to go with S. to the doctor today and visit our friend, but I felt a bit run down and tired.  And I wasn’t able to go out tonight to see our “premarital” counselor.

2. What’s your illness?
For some people this question bothers them. They are more private, but I am an open book. I feel the more we share the more we can learn from one another.   Primarily I have IBS, chronic migraines and sleep apnea.  I also was born with a congenital heart defect that has to be monitored. I had to have a minor procedure (potentially to put a stent, but i didn’t need) this past spring.  

3. How long have you had your illness?
I was born with my heart problem.  I had three heart surgeries. The first one was at only ten days old. The second as 4 months old and the third at 6 months old. I have had two balloon catheters since that time.  I developed IBS in middle school.  It has progressively gotten worse since then.  I developed migraines in middle school,but I would get one occasionally.  They only became much worse after a car accident in 2009.

4. What do you do to take care of your illness?
This question is sometimes broken down or asked as, “how do you manage your illness?”  I take a small dose of two medications. One I call my magic bean because it addresses migraines, IBS and my ADHD.  I sleep with a CPAP.  I also try to stay on or close to the FODMAP diet for IBS. In addition, I go to PT twice a week.  I also get Botox injections.  I also have routine visits with my doctor.

5. Which illness is the worst to deal with?
It depends on the day.  I would often side with the migraines, but an IBS attack can be quite painful and awful.  Perhaps, if it were an actual problem and not a potential problem I would say the heart problem.

6. How does your illness affect your work or school life?
I have to work from home.  I had to give up a career that I loved and where I had finally found success. I LOVED my job.  I am lucky however that there are options to work in my field from home – via online teaching and creating educational curriculum.  I do, however, miss the socialization.

7. How does your illness affect your social life?
It makes it hard to go out with friends because I don’t know when I will have an IBS attack.  I also don’t know when I will have a migraine.  I sometimes promise friends I will see them, but then I don’t feel so good.

8. How do you cope?
I don’t really have an option.  I try to find the small joys in life – getting out and seeing friends when I can, spending time with S., a ‘good’ day. I push myself hard but not too hard because the only thing scarier than being dead being dead is the lviing dead. I don’t want to be living dead.

9. How would your life be different if you didn’t have your illness?
Financially it would be a lot better.  S. isn’t working right now and it would be quite nice if because he’s not that I could work more.  Currently, to make it worse, I am between jobs.  Also, I could even live in a foreign country and make a lot more money teaching ESL than I do here in the States.  Also, my engagment to S. wouldn’t be so long (2 years)  In addition, I could be more social with my friends.

10. Do you exercise? Drink water? Eat right? Sleep right?
I hate when people ask me these questions as if I haven’t learned the same self-care skills they have. Often I know them better than they do.  It’s often said in a condescending way.  I exercise currently due to PT.  I ride my exercise bike and I do my PT exercises.  I drink water – lots and lots of water.  I eat a lot better than I used to. While it could be improved,if I ate right it wouldn’t take everything away.  I do sleep at night but due to sleep apnea I don’t always get a restful night’s sleep.

So answer these questions about yourself – share your story.

Another Tip for Going to the Doctor

Last night I read S., my fiance,  the tips for going to the doctors.  He said I had forgotten an important tip – bring a second person. I decided that it was too important to simply tagged on to the previous blog post.

Here are several reasons to bring someone with you to your doctor’s appointment:

1. Company.  Not just because it is boring in the waiting room and waiting for the doctor in the room,  but because it can distract you if you are at all anxious.
2. Sounding board. It is great to talk to someone about what the doctor said. You may need to grapple decisions about what procedure to have or which med may be best for you.
3. Support. Recently I went in for Botox injections for migraines.  I was nervous.  It was great to have S. there to hold my hand as they put 30 needles in my face, neck and shoulders.
4. Reinforcement.  Maybe you are having a hard time articulating yourself.  Maybe your doctor seems oblivious to your wants without meaning to be. Maybe, like me, you think of all the good questions after you leave.  It’s good to have someone to reinforce your wants and needs. 
5. Witness. Sometimes it helps for a doctor to hear how drastically your illness is affecting you.  Hearing someone say they see it as well helps testify your case so doctors know that it’s very likely not psychosomatic.
6. Required. Sometimes a doctor’s visit will require someone else to drive you home especially of you have a procedure done or your eyes are affected.

Tomorrow S. has a doctor’s appointment for his knee. It’s not getting better.  I was hoping to accompany him.  Unfortunately,  I have PT.  I often cancel due to my IBS so I shouldn’t cancel tomorrow.

Chronic Illness and Relationships Part 3 – Doctors

Last December my doctor realized I had a minor problem with my heart that I could choose to have fixed or leave.  If I had it fixed, it would save me from possible further trouble down the road and make it safe for me to have children if I chose to have children.  I opted to have the surgery so we promptly scheduled it. 

Not soon after it was scheduled,  I started having bizairre migraines symptoms – dizziness, weakness on the left side,  tremoring in my hands and mild chest pain.  I called the cardiologist who discussed my symptoms with a team and decided to see me,  but doubted it was cardiac. 

Well, around the same time, I decided to see my neurologist.  I had seen a doctor in the city the year before,  but hadn’t been a fan of her.  So I opted to see a new doctor.  He didn’t even look me over and simply said, ‘Why are you here! ? Your problem is cardiac.”

I went back to the doctor I had seen a year earlier and she insisted it was cardiac also.

My cardiologist had done an EKG, echocardiogram, and stress test.  After I saw him,  he listened to my heart and did another (EKG) I also was required to do one each time I went to the ER. The chances of it being cardiac were slim.

By this point, I knew it wasn’t cardiac,  but doctors insisted.

Finally,  I went to a neurologist that I had seen five years before and he started treating me for the migraines. 

My point being doctors can be frustrating.  I get it!  However,  we as patients can not view ourselves as innocent victims nor can we view all doctors as the enemy.  With all I went through, my PCP, cardiologist and eventually the neuro have given me faith in doctors. 

1. Just like any relationship,  our relationship with doctors is a give and take.  You should expect help and cooperation from your doctor – as well as expertise.  However,  your doctor isn’t perfect.  Your doctor isn’t a miracle worker.  Your doctor needs your patience,  understanding and honesty.  Blowing up on your doctor will not solve ANYTHING! Also, if you aren’t honest with your doctor about some habits they may overlook causes of your problem.

2. Don’t tolerate a bad doctor.  Some doctors just suck. As my mom says,  “Someone had to graduate at the bottom of their class.” Notice when the doctor refused to even evaluate me and declared it was cardiac I didn’t stick around.  I found a new doctor.   If your doctor gives you a diagnosis without an evaluation,  if your doctor says it’s all in your head or your doctor isn’t cooperative find a new doctor.  Some doctors shouldn’t even be in the profession.
3. If your PCP doesn’t know a lot about your illness bring in reputable information about it.  Doctors won’t really pay much attention to what someone writes in a blog or a forum page. 

Note: Be skeptical of blogs. Steer clear of one’s that offer fast cures or remedies,  medical advise that hasn’t been proven (or not given by a doctor. Practical advise is okay,  but not medical) or anything that goes against medical advice your doctor has given. &nbsp

This is the article I have been writing my last three blogs on. My advice may vary some, but not a lot.

http://healthheal.info/fibromyalgia-relationships/