Lymphedema Treatment Act

Imagine you are told you have a condition that requires lifetime treatment.  The supplies you need are simple, some are expensive, but necessary to control your condition.  And then you find out your treatment supplies are consumed very quickly and must be replaced constantly.  And none of those supplies are covered by insurance.  And finally you realize if you don’t pay for all these supplies your condition will deteriorate and get worse.

There are many causes of lymphedema.  It touches people of all ages.

http://lymphedematreatmentact.org/

 

Lymphedema is Forever

 

You can’t cheat lymphedema.  It can affect a famous actress, different cancer survivors, the soldier who suffered a terrible trauma, a child with a genetic or inherited issue.  It’s with you forever. Don’t follow your treatment? Serious complications will follow.

I will need to wrap my arm like this every night for the rest of my life.

Some of the supplies I need every day, these are a just a portion and these  along with the rest are not covered by my insurance, there are much more not pictured here.  I spoke with my physical therapist about why some people let their lymphedema get out of control. Came to light that perhaps they could not afford all of the supplies.  Homeless?  Have to choose between your lymphedema supplies and paying your rent or mortgage or groceries?   The truth is my insurance pays for none of the supplies I need to keep my lymphedema under control!  They pay for a portion of one sleeve and glove each year that is my daytime therapy (I’ll need at least 2 or 3 each year minimum if I am really careful).  I am not alone, another lymphedema sufferer I know is in the same boat as I am. We both have jobs so we are not going to sink but that boat next to us is sinking.

I am getting my lymphedema under control and was just measured for my first sleeve and glove that I’ll wear during the day.   My insurance is not covering all of this and the supplier called me to make sure I knew my out-of-pocket was quite hefty and not part of my deductible and I was responsible for this uninsured portion.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

March is Lymphedema Awareness Month

Lymphedema is a swelling caused by excess fluid.  Cancer patients can get lymphedema because lymph nodes are damaged or removed during surgery and damaged by radiation.  Lymphedema becomes uncomfortable and limits movement as it progresses.

Treatment?  The therapists through my current insurance are booked weeks out.  As lymphedema progresses it can cause tissue damage and other permanent damage.  Waiting weeks for some relief was not an option.  I increased the exercises for stimulating lymphatic system and added a manual lymphatic drainage (light self-massage) to reduce the swelling.  I was unaware of this simple technique until a friend told me about it.

The results?  Swelling reduced and movement almost back to normal.  Much more comfortable.  Since I was previously doing the exercises, I believe the light self-massage was the thing that reduced the swelling so dramatically.

At the preliminary therapy appointment I was told that my insurance did not provide any massage or self-massage techniques.  I was told that the self-massage probably did not help.  If I wanted to continue self-massage to go ahead because it probably didn’t hurt anything.

My first therapy appointment to learn how to do the compression bandaging designed to reduce swelling?  Two more weeks.

The interesting thing about this self-massage is the light touch used.  One therapist described it as pushing a dime across your skin.  It is just a suggestion to your tissues to wake up and get that fluid moving.  Anything more aggressive is a no-no!

 

 

 

October is Breast Cancer Awareness Month

 

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Tumors can be too small to be felt or in a place where they can’t be felt during a physical or self exam.

Mammograms are not fun but can locate these tumors early.

My extremely small tumor could not be felt but had already moved to a lymph node when it was discovered.  I would be in a very bad place if it weren’t for a mammogram.

October is Breast Cancer Awareness Month so spread the news on the importance of mammograms!

If your mammogram is suspicious remember that:img_0625

Enlist family and friends for support!

 

 

 

Cancer, the Caregiver and Survivor.

As I travelled the cancer journey with my husband I first experienced the emotions of cancer.  Being recently diagnosed with stage II breast cancer I am now traveling my own journey.  The emotions of the caregiver and cancer survivor are similar for me but each a two sided coin.  Not allowing my husband’s journey to overwhelm mine, well there is the key to my journey.

Overwhelmed

What?  What does all this mean? Medical terms, your life is out of control and not your own anymore.

Denial

Accepting the fact that you or someone you care about has cancer.  Becoming strong and moving forward.

Anger

Why is this happening?

Fear and Worry

How am I going to handle this financially?  How am I going to handle this physically?  How am I going to handle this alone?

Hope

Living each day one day at a time.  Realizing that I am not alone and the amazing things that others have done to help!

Stress and Anxiety

Reliving all that happened before.  My husband had a difficult time.  Realizing that what I am going to experience is not the same, not as difficult, as what my husband experienced.

Sadness and Depression

Watching a loved one fade away.  What will my journey be like?  No energy and always tired.  Not myself at all.

Guilt

Did I cause my cancer?  Cancer just happens.

Loneliness

As I tried to support my husband and now deal with different emotions.

Gratitude

Hey my dogs make me smile all the time.  This peach tastes amazing!  That dandelion flower is kind of pretty.  Swimming with my friends makes me happy.  I love the summer festivals!  It looks like I am going to be okay after treatment!

Mammograms and Thank You to My Friends

 

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Mammograms are described as a noninvasive medical test. I think the word noninvasive needs to be re-evaluated. Having your breasts squished several times while you are instructed to stand still and hold your breath is invasive.

X-ray images today are digital files and the radiologist can easily compare past mammograms with a recent test.

Mammograms are an important tool in detecting cancer early. Early detection of cancer may help you avoid aggressive treatments like surgery or chemotherapy.

Avoiding tests like mammograms and colonoscopies and ignoring symptoms is foolish.  This is how I lost my husband.  (I am not experiencing any symptoms, just medical test avoidance syndrome.)

My friend Sandy and other friends are helping me deal with just moving on and getting all my health obligations back in line.  Thanks to them I have picked out a new doctor, had a physical, an eye exam, a mammogram, have scheduled a dental appointment and some much needed physical therapy, and last but not least, Sandy has offered to take me to my colonoscopy!

I do need to go back for more tests after my recent mammogram.  Wish me luck!

Please don’t delay these simple tests, I am feeling pretty liberated now that I am getting over my reluctance of medical stuff.

Thank you Sandy and all my friends who are being patient with my avoidance of anything medical right now.  (I thought I was going to be happy if I never saw the inside of another medical building.) I appreciate your sticking with me!

 

Learning to go it alone.

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Monty jumped on Roscoe playfully last night but the scream Roscoe let out stopped Monty in his tracks.  Roscoe and I were on our way to the emergency vet immediately.  I instinctively wanted to call my husband who would calm me down on my drive to the clinic.

It was a habit really.  Kelly may have worked out of town a lot but he was always available when I needed him.   I remembered again that I was going to have to do this alone.  One more thing in the string of things that happen every day.  Big and small things, things you share with your spouse.

Alone.

Cancer stole Kelly from me.  I am mad, I am sad, but mostly I’m alone.

But sometimes I don’t feel so alone, sometimes I feel like somebody is with me and helping me.  Just when I think:  “Oh my gosh I just can’t do this anymore”, something wonderful happens and I can move forward.