Frozen (post #13 in my 30 in 30 series)

shoulderNo, kids, this is not a post about Disney’s smash movie (although I’m anxiously awaiting the sequel! ).  This post is about a very painful condition that I developed after my mastectomy, and upon doing some research, I found I’m not alone.  I experienced some of the more common side effects right after my surgery, such as numbness in my arm and chest, limited range of motion in my arm, and some fluid retention.  Nerves had been cut and damaged as part of the surgery, and I had multiple lymph nodes removed.  I was told the nerve damage would take anywhere from 6 months to a year to heal (actually, I finally have full feeling in my arm and underarm after 3.5 years) and the fluid could be a sign of Lymphedema. My Oncologist sent me to a specialist for evaluation and education.  WebMD defines Lymphedema as “an abnormal buildup of fluid that causes swelling, most often in the arms or legs. The condition develops when lymph vessels or lymph nodes are missing, impaired, damaged, or removed. The lymph nodes are part of the lymphatic system which helps fight off infection and clears debris from the body.”   Fortunately, with massage and physical therapy, I was able to eliminate the fluid build up and did not develop Lymphedema (although I will forever be at risk of developing it and have to take some precautions to avoid it, which I will explain later).  However, the stiffness just seemed to get worse and a tendon underneath my arm became extremely tight, like a taut, steel wire.  It became increasingly more painful and difficult to move my arm.  I couldn’t raise my arm much higher than my waist.  One day, I attempted to wave goodbye to my kids, and a terrible burning/shooting pain ran from my shoulder to my fingertips. It literally brought me to my knees.  I couldn’t take it anymore.  I was referred to an Orthopedic surgeon, who diagnosed me with “adhesive capsulitis” – better known as a frozen shoulder.  We tried a different course of physical therapy in an attempt to restore range of motion in my affected arm and break up scar tissue that had formed and was restricting movement.  The last resort, my doctor explained, was surgery – Manual Manipulation Under Anesthesia.  Sounds like fun, right?  It would be too painful to move my arm in the way she needed to and break up the adhesions, etc. while I was awake, my doctor said, so I would have to be knocked out.  I really hoped the physical therapy would work.  Turns out, it wasn’t enough.  I ended up the having the surgery and am so glad I did.  My arm will never be 100%, but it’s so much better than it was.  I can lift my arm above my head (although it’s still a bit stiff) and can wave goodbye with no threat of crippling pain.  I still have to be careful, however, not to put too much strain on my arm.  I have to avoid having my blood pressure taken on my affected arm and have to get my blood drawn on the un-affected arm.  Anything too tight or restrictive can affect the flow of lymphatic fluid and pin or needle pricks can increase my risk of infection, which can all lead to Lymphedema.  When I fly, I wear my compression sleeve because the change in cabin pressure can affect my circulation and increase the risk of swelling.  I have to be mindful everyday, for the rest of my life, of how and how much I use my arm.  But, I’m thankful to report, today I am frozen no more and, with a little knowledge and self-care, I can keep it that way.

* For more information on Lymphedema, please visit  http://www.breastcancer.org/treatment/lymphedema

* For more information on frozen shoulder or adhesive capsulitis, please visit  http://stlhealthandwellness.com/adhesive-capsulitis-or-frozen-shoulder/

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Stand still and don’t breathe….(post #12 in my 30 in 30 series)

keep calm and get mammo

To learn more about mammograms, please visit http://www.cancer.gov/types/breast/mammograms-fact-sheet

Painfully Aware (#11 in my 30 in 30 series)

pain

I know a thing or two about Pain.  Pain and I go way back – back to when I was a freshman in High School.  I actually have difficulty remembering what life was like without having to deal with pain and discomfort on a daily basis.  I’m not complaining – just explaining.  I’ve actually learned a lot from my Pain and believe it has made me strong, even as it makes me weak at times.  When I was 13 years old I was diagnosed with Juvenile Rheumatoid Arthritis (JRA).  It was scary, painful, and frustrating.  I would go to bed in pain and wake up in pain.  I felt like a 98 year old woman, hobbling down my high school’s hallway with a cane.  My peers didn’t understand – arthritis was for old folks, they would say with a snicker.  High school is tough enough, but add excruciating pain, visits to the Rheumatologist (where I was always the youngest one in the waiting room), ever-changing pain meds, and an un-cool limp, and it’s nearly impossible.  Fortunately, I survived high school and eventually my JRA went into remission in my mid-twenties.  I learned much about depression, isolation, strength, resilience, and hope during that time.  I also learned one of the most important lessons in my life so far – the separation of mind and body. Since my pain was a daily visitor, I figured I had two options – let my unwanted guest ruin my day (and, in the long run, ruin my life) or learn to accept my guest but not let it dictate how I felt emotionally.  Sure, my physical state was out of my control, but I was the one who chose how I felt and thought about it and myself.  I was eventually able to exist in what seemed like two opposing states – I could be in extreme pain but still have a smile on my face and have a decent day.  I couldn’t let myself be in as much emotional pain as my physical pain, because it would have ruined me.  I believe this lesson has subsequently helped me get through breast cancer and is now helping me deal with Lupus.  My physical being does not rule my emotional being – although sometimes it tries very hard to.

*To learn more about Juvenile Rheumatoid Arthritis, please visit  http://www.webmd.com/rheumatoid-arthritis/understanding-juvenile-rheumatoid-arthritis-basics

Sunday Night ( post #10 in my 30 in 30 series )

nap

Looking forward to the week ahead…..

4 Years Later (post #9 in my 30 in 30 series)

me and girls 2011I was reading through the journal I kept when I was in treatment this afternoon, and I was struck by the fact that it was 4 years ago when I was in the middle of all my cancer craziness.  I read entries dated July 2011 that talked about the side effects of my chemo, my feelings of fear and loss, tough decisions to be made, and sweet entries about my daughters’ birthdays (my youngest, Kayla, was born 7/9 and my oldest, Jada, was born 7/26).  In the summer of 2011, they had just turned 3 and 6 – they were 2 and 5 when I was diagnosed.  In one of my entries, I wondered how my illness and struggle would affect them in the long run, so I decided to ask them about their memories of it.  My little one could only remember that I was bald and wore hats a lot.  She does not remember that I had cancer and doesn’t even know what cancer is, she says.  She apologized for bringing up that I was bald and started giggling at the memory.  I told her it didn’t bother me and I read her my journal entry from her birthday 4 years ago.  That made her smile and she gave me a big hug and skipped out of the room.  My oldest, however, had more memories of that time.  She said she knows I had cancer, but couldn’t remember what kind, and that I spent a lot of time upstairs in bed.  She also remembers coming to check on me each morning and evening before and after school to make sure I was ok.  She has good memories of going to the kid’s support group at Gilda’s Club and said she can’t believe that 4 years have past – it feels like just yesterday, she said with a bittersweet look on her face.  I asked her if the experience had changed her and she yes, but her answer was not what I expected.  She said, “I learned that even in the worst times, something good can come out of it.”  I was so relieved that it hadn’t  scarred her for life!  I read her my journal entry from her birthday 4 years ago and she buried her head in my chest and cried a little.  I hugged her and thanked her for helping me through the toughest time in my life and told her I was proud of her.  Tomorrow, she will turn 10 years old – earlier this month my youngest turned 7.  4 years ago, I wasn’t even sure I would be around to see them reach their next birthday.  What a difference between then and now – thank God.

Breast Cancer by Numbers (post #8 in my 30 in 30 series)

pink initiative

These numbers are staggering – I wanted to share them to increase awareness.  Knowledge is power and can hopefully save lives.

Too pooped to post (#7 in my 30 in 30 series)

tired babyToday marks my 7th post in as many days.  It feels good to be meeting my creative goal of writing and posting daily.  The hardest part hasn’t been finding topics to write about, like I thought, but finding the time and energy to post my writing.  I work full-time, and some days, like today, it takes all my energy to get up, get myself and my kids ready, and make it though the day.  Fatigue is one of the most common and most debilitating symptoms of Lupus.  I came home today and went straight to bed, still in my work clothes.  I tried to post before I fell asleep, but was too pooped to post.  I slept for a few hours and only got up because I promised my family I would finish watching a movie with them.  I’m still pretty tired but wanted to make sure I wrote a little something to keep my writing streak going.  I’ll leave you with some info on Lupus and fatigue from the Lupus Foundation’s website:

How can I manage my fatigue?

As many as 80 percent of people with lupus experience fatigue. For some people with lupus, fatigue is their main symptom. Fatigue can be debilitating, even to the point of forcing them to stop working.

It is unclear why extreme fatigue occurs in so many people with lupus, but the following appear to play a role:

  • Disease activity
  • Pain
  • Age
  • Current medications
  • Poor physical and mental health
  • Lack of good social support

Poor coping strategies, feelings of helplessness, depression or anxiety, smoking, and lack of exercise can also be related to lupus fatigue. Before a physician can conclude that fatigue is related to these factors, he or she will rule out any “treatable” causes of fatigue such as anemia, kidney failure, or hypothyroidism.

Physicians experienced with lupus recognize the harmful and even destructive effects that extreme fatigue can have, and research is underway to learn more about how to treat the problem. Getting regular exercise and being part of a support group can help.

By making some adjustments, people with lupus-related fatigue will be less likely to push themselves to exhaustion.

Tips to Help You Manage Fatigue

  • Alternate activities with periods of rest throughout the day.
  • Establish good sleep patterns.
  • Plan ahead; for example, shop for gifts throughout the year.
  • Prepare meals in advance.
  • Eat a healthy diet and exercise regularly.
  • If you smoke, stop.
  • Rest

Medically reviewed on June 20, 2013

To visit the Lupus Foundation website, please go to http://www.lupus.org/

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