2nd QUARTERLY UPDATE

It’s already summer, time is flying by.  Well, in my last update I talked about how this year is my year of ACTION!  I am working towards my goal of living a balanced life with multiple chronic illnesses.

Beginning June 1st this month, I started a new approach to my spiritual life.  I read the book “Writing Down Your Soul” written by Janet Conner.  The book talks about writing from your subconscious mind.  It explains the process of reaching one’s deeper thoughts through a spiritual ritual.  This book has encouraged me to mediate on God’s word every night and practice writing from my soul.  This has helped me engage in one of my goals, meditation.  I feel a greater connection to my faith as well as a greater connection to others.  I first use aromatherapy to calm myself, then read some scriptures from the bible, pray, then write.  I call it my Awakening Ceremony.

The second action I have been working on is exercising more.  I have been working up to two 15 minute sessions a day on my Simply Fit board.  So far I have been doing it almost everyday this month.  I have had some improvement with not feeling as stiff.  Plus, my ankles have not been as swollen.

I am looking forward to seeing progress on these two goals.  We will see what happens in the next quarter!

DAD’S PROFOUND SAYINGS

Dad

My father, a.k.a Superman, was a very intelligent man with a great engineering mind.  He was passionate about his beliefs including his faith in God.  He was a well-rounded individual enjoying art, opera, architecture, and poetry.  He was skilled in repairing or building anything from home appliances, our garage, the computer, to the DNA molecule I had to make for a school project.  Anyone who knew him would say he was rough on the outside but caring on the inside.  They would also agree he was quite a character with a sense of humor.  Well, he thought he was funny, anyways.  Being a three-time cancer survivor, he still found things to laugh about during his treatments.  So, to honor my Superman on Father’s Day I am sharing his top five profound sayings.

DAD’S TOP FIVE PROFOUND SAYINGS:

  1. “He’s got all his marbles but his bag is ripped”

He often expressed this when he thought a person was being illogical.

  1. Don’t leave mad, just leave“.

He would say this when I was mad because he would not allow me to do something I wanted to do.

  1. “I see your intentions of killing the cow”.

He said this when he prophesied something bad was about to happen.  It was funnier when he said it in Spanglish (Spanish and English together)

  1. “You got to laugh about something”.

Even in a most difficult situation, he still found something to laugh about.

  1. Don’t tell your mother!”

Of course he said this when he was about to something he should not be doing!

 

CHRONICALLY TRAVELING

Recently my husband and I went on a beach vacation.  For most people packing is rather light for a beach trip.  You need t-shirts, shorts, bathing suit, sunscreen, sunglasses, flip flops, and a hat.  For the person with Diabetes and other illnesses it is a little more complicated.  To make it easier and more organized, there are a few items I use:

  •  A duffel or carry-on bag:  I take a separate bag to carry all my medicine and diabetic supplies.  In the bag I put my pump supplies:  tubing, extra infusion sets, reservoirs, and insertion device.  I put extra glucose monitor strips and battery charger for my glucose monitor.  In addition I pack extra AA batteries for my insulin pump.
  • Medimemo pill organizer:  I found this box on Amazon.  It keeps all the pills in a case that is easy for packing.  I put all my pills for each day.  I can also put extra pills such as Tylenol and anti-inflammatory pills.Medimemo 7 Day Pill Organiser Medi Dispenser
  • Insulin cooler:  This keeps my insulin cool while we are traveling.  This can be purchased on Amazon.

Insulin Protector Case Insulin Cooler - Blue

Even though it takes some extra packing, one with chronic illness can still enjoy a great trip to the beach!

 

 

Interested in joining a Chronic illness Support Group in Orlando?  Visit my Support Group page to register:  Support Group

SUNDAY SUPPER – BLACK BEAN SALSA 3 WAYS

Here is an easy meal I put together recently while my husband and I were on a weekend beach vacation:

Black Bean Salsa

  • 1 can black beans
  • 1 can corn
  • Juice of 1 lime
  • 2 or 3 tbs. olive oil
  • 1 onion chopped
  • Chili powder (to taste)
  • Salt
  • Pepper

Additional Toppings:  chopped tomato, chopped avocado, cheese and sour cream

Directions:

Mix all ingredients together in bowl and serve with toppings:

Option 1:  Taco salad.  Add lettuce to bowl and cover with salsa and toppings.

Option 2:  Put salsa and toppings in a soft tortilla and wrap it up.

Option 3:  Add rice to make it a Burrito.

Serve with tortilla chips and a side of fruit.

THE CHRONIC CHILD – PART 2

Continued from two weeks ago…

Once I stopped taking the experimental drug at age eight, I no longer needed to stay in the hospital during the summer.  The only thing I needed to take was anti-seizure medication and see my Neurologist periodically to have an EEG done.  Now we could take a real vacation to the beach instead of our usual trip to the hospital!

It is hard to describe what it was like being a child while enduring all those medical tests.  Eventually I think I developed a sense of detachment.  When I went to the doctor or had a test done I could feel my brain “detach”.  It was like I was on the outside of my body looking into the room.  This was a coping mechanism I established to remove my feelings from the situation.  This allowed me to stay calm and get the test over with so I could move on with my day.

My adolescent years were a little better for me socially.  I had a small network of friends from church and a few friends at school.  I still often felt different from them and misunderstood.  They couldn’t identify with having medical tests and going to doctors frequently.  All they had to focus on was doing schoolwork.  They didn’t have the additional worries my illness caused:  what will happen to me next, what other tests are going to be done on me, did I take my medicine today?  Like most adolescents, my friends would tease and make jokes about me.  It reminded me of the teasing I received when I was younger due to the side effects of the special medicine I took.  To them it was just a joke but it broke down my self-confidence.  The banter just made me feel worse about myself.  You would think I would use my detaching mechanism at this point but I didn’t.

This caused more isolation.  I would say that the main issue I developed from my illness as a child is seclusion.  I would still spend time with my close friends but I did not enjoy meeting new people or being in a social situation.  I did not like being in a group situation where I needed to be outgoing.  I preferred to sit in a corner by myself.  The comfort of being alone followed me into adulthood.  Although the classes were larger in college, I still chose to stay to myself most of the time.  I found a few new friends and hung out with them most of the time.  I was always the quiet one in the group when we needed to work on a project.  This also reflected my lack of self-confidence.  In addition, being insecure might have resulted in lower grades.  I didn’t have confidence in what I was capable of doing.  Even after I married I stayed to myself.  I had to move to a new city and found it difficult to find a close friend

As an adult, I was diagnosed with new illnesses, Diabetes and Thyroid diseases.  Once one becomes an adult medical issues are more common.  Still it is difficult for one to comprehend being ill for an entire life.  Even though I was in my twenties, I was already tired of being sick.  Yes I was used to having tests and doctor appointments but now I had to deal with new challenges with chronic illness.  First of all, these illnesses will never go away.  In addition to that there was added stress of a full-time job, marriage and maintaining a household.  I lost time going to appointments and taking medication.  Being ill was an inconvenience.

I didn’t realize it at the time but my first round of Depression came during a difficult period with my Thyroid disease.  Finally after years of being ill I had to grieve for the time I lost due to being sick.  It wasn’t until several years later that I discovered that was what my Depression was about, grief.  I always thought I accepted being sick but actually I was in denial.  Maybe those years of isolation were not just a lack of self-confidence.  Maybe it was a mask for hiding denial of my medical challenges.  It appeared I accepted my situation, taking medications and going to doctors like I was supposed to but actually I resented having to live with problems that others didn’t have to deal with on a daily basis.  It was time for me to grieve all the feelings I tried to deny:  anger of not having a “normal” life, fear of not being good at something, and sadness for the battles I had to fight.  Ultimately, after years of therapy, I can now accept my life with all its complications.  I have opened up more socially and feel confident in everything I do.  I often wonder how things would have transpired if I had counseling at a younger age.  Would I have reached acceptance sooner rather than in my forty’s?  I guess I will never know.  I have learned a great deal from my struggles and wouldn’t have it any other way.

THE CHRONIC CHILD – PART 1

I was born with a rare medical condition which caused many hospital stays and a need to take an experimental medication during my childhood.  Even after I was taken off the medication at eight years old I still had to endure many doctor visits and take other medication to control the Epilepsy I developed as a result of my infancy trauma.  I was treated for Epilepsy until I was fifteen years old.  Since then, I have been diagnosed with Diabetes, Thyroid disease, Psoriasis, Psoriatic Arthritis, and Fibromyalgia therefore; I have been chronically ill my entire life.  I often wonder how much the trauma I went through as a child has affected me now as an adult.  It is difficult to discern whether certain aspects of how I respond to life events are just because it is my personality by nature or if it is a direct response to the complications I experienced in my early years.

Let’s review what occurred in my youth.  When I was six weeks old the doctors did surgery to remove most of my pancreas due to the fact I had extremely low blood sugars which caused seizures and comas.  The surgery did not fix my problem so they gave me an experimental drug.  I stayed in the hospital for most of the first year of my life.  My mother stayed with me, my father had to work, so my siblings were cared for by our grandmothers.  Each summer for the next eight years of my life, my family would travel 2-1/2 hours to a hospital where I was being treated.  I would stay for the week with my mother while they tried to take me off the medication.  My father would stay with my brother and sister at a nearby hotel.  I can’t imagine how my siblings felt being separated from our mother most of the time.  I am sure it was difficult for them especially for my brother who was only five years old when I was born.  I recall one instance during a hospital stay.  There was a little boy in the room next to mine.  He started crying hysterically because his mother was going to leave.  I asked my mom, “Why is she leaving him”?  She said, “She has to go to work, she can’t stay”.  I remember feeling so bad for him because he was going to be alone.  I was so lucky, my mother was with me all the time!  Consequently, I developed an extraordinary attachment to my mother.

The experimental drug I took caused side effects of swollen gums and excessive hair growth.  I remember kids teasing me about my gums and asking me why I was so hairy.  At first I would tell them I was sick but they didn’t understand so I would just ignore the comments.  This led to isolation because I thought no one wanted to play with me.  I did have a few friends but I got used to being alone and preferred it that way.  I often felt misunderstood.  It was too much work to try to fit in so I chose to be by myself.  Because of this behavior I was known as the sweet, quiet child.

My youth was filled with blood tests, doctors, hospitals and EEG’s, electroencephalograms.  You would think these type of events would scare a child but it was normal to me.  I didn’t know what life was like without having these procedures.  I guess children are more resilient than adults.  I went along with whatever was done to me.  It’s not like I had a choice though.  In between all of these procedures I still went to school and liked to ride my bike in the backyard.  Learning in school was always a challenge for me.  Now looking back, I think I struggled with overcoming school issues because I was already dealing with the medical issues.  I was tired of fighting so when I was faced with another trial I would shut down saying, “I can’t do it”.  My parents would spend a lot of time helping me with schoolwork.  I felt guilty because I knew they had to be exhausted from their efforts but I just couldn’t endure more difficulties.  It was too stressful.

To be continued…

FIBROMYALGIA AWARENESS DAY

May 12th is National Fibromyalgia Awareness Day.  To spread awareness, I going to tell you about my experiences with this illness.  First, let me explain what it is.  Fibromyalgia (Fibro) affects the way the brain processes pain.  When a pain signal is sent to the brain, it releases serotonin.  However, those with Fibro do not produce enough serotonin so the brain gets overwhelmed creating an amplified sense of pain, hyperaglesia.  Even a light touch can feel very painful.

What does Fibromyalgia feel like?  Well, let me tell you about a day in my life.  Morning comes and there are times that I cannot get out of bed.  I actually have to roll on my side to get up.  Even though I slept all night, I am still tired.  I start to walk and it feels like I have lead in the bottom of my feet because my body is so stiff.  After doing some stretching I can start moving.  Usually taking a shower helps one wake up but in my case I have to rest after getting out of the shower, it is exhausting.

As my day continues I am faced with different annoyances each day.  Some days my hands and feet itch like crazy.  It is an itch that I cannot reach no matter how much I scratch.  Sometimes it feels like needles pricking my skin causing sharp pain.  Then there are times when the top of my skin hurts, this is called Allodynia.  If my knees or ankles barley brush against each other I feel intense pain.  It stings like clothes rubbing against the skin while one has a sunburn.  Ouch!  I want to jump through the roof!

Fibromyalgia amplifies everything including sounds and lights. While talking on the phone at work I have to turn down the volume because the voice on the other end sounds like a person talking through a megaphone. In addition I am quite disturbed by the noise my co-workers make while they are either eating snacks, humming to themselves or whistling.  Driving home from work is a challenge due to the reflection of the sun on the dashboard blinding me.

Once I am home after a day of work, I have to choose which activities I can accomplish that evening.  Sometimes I can cook a full meal from scratch, sometimes I am lucky if I can take a few things out of freezer and put something together.  I am thankful I have a husband who helps with cleaning the kitchen afterwards.   If I have errands to run after work, I normally don’t cook, I just pick up something while I am out.  The person with Fibro often has to pace activities.  If I know I am going to have a big weekend, I will try to limit events during the week so I can save energy for the weekend.  Fatigue is always a concern with Fibro because one’s body is always fighting the effects of the illness.  Finally at the end of the day, I usually have the need to elevate my feet and ice them because they are swollen.

One or more of these symptoms occur on a daily basis.  The symptoms can be very mild or in some cases very painful.  On my worst days I experience muscle pain over my entire body, migraine headaches, nausea, and digestive issues.  Extreme fatigue always comes on my more difficult days and no matter how much I sleep I don’t feel rested.  It has been reported that people with Fibro do not have the same sleep patterns as a person without it and never fall into a deep sleep.

So, that is a day in the life of a Fibro girl.  I have learned to manage the symptoms by pacing my activities and limiting stress.  (Stress is another factor which aggravates the illness).  I have been fortunate that most of the time the symptoms are mild.  On the bad days, I am grateful for having a loving husband who helps me get through it.