What is Lymphedema?

According to the Mayo Clinic Lymphedema is blockage in the Lymphatic system, which is part of the immune system.  Lymph fluid is prevented from draining causing a buildup which then leads to swelling in extremities.  Arms and or legs are affected, it can be one arm, one leg or both.

So why am I mentioning this???  Well, here's what is going on with me...

Last July 2019 I noticed my left leg, foot and ankle was swollen.  Usually during the summer I will experience swelling and it will go away as the weather cools.  That was not the case last summer.  I mentioned it to the doctor I had at the time.  He did not seem too concerned about it.  A couple of months later that doctor left Renown and I had to find another primary care provider.  I was referred to a nurse practitioner who referred me to have an ultrasound done on the left leg and to an orthopedic surgeon.  The ultrasound showed that I had a benign cyst back of my left leg, nothing to be concerned about.  The orthopedic surgeon had no clue as to what was wrong.  He wanted to get approval for an expensive cortisone shot to alleviate the swelling.  He also suggested compression socks.  I declined the cortisone shot, however did purchase compression socks.

Then for Thanksgiving we traveled to Colorado to join son Erik and his family.  I wore a compression sock on my left leg and it seemed to help.  A few weeks after getting back from our Colorado trip, I noticed swelling in my right foot, ankle and leg, and with it intense pain.  There was a tightness in my left pain, however not much pain.  The pain in my right leg was unbearable the majority of the time.  The only time there wasn't pain was while I was sleeping and elevating my legs.  I didn't contact my PC provider and should have.

At the end of 2019, my health insurance provider terminated all clients who lived in rural counties.  We live in Lyon County which is a rural county so I lost my coverage.  That meant I had to find other insurance coverage.  I could have used just Medicare but I didn't really want to do that.  In February 2020 I enrolled with Prominence Health System which is a Medicare Advantage Plan.  Senior Care Plus that I had was also a Medicare Advantage Plan as was the Kaiser Plan I had when we lived in Sacramento.  Enrolling with Prominence meant that I had to start from my beginning with my health care.  The PC provider I was referred to then referred me to a Cardiologist and a Nephrology (Kidney) Specialist.  These doctors addressed the issue of the leg edema.  After another Ultrasound prescribed by the Cardiologist, it was determined that the edema was not heart related, there were no blood clots.   He referred me to a Vascular Surgeon who also ordered an Ultrasound.  He determined that it was not vascular, no problems with my veins and circulation.  The Kidney doctor also determined that the edema was not kidney related although I do have kidney damage, due in part to having diabetes.  That's a whole different story.

One of the things that the Vascular Surgeon mentioned was unclassified Lymphedema.  The PC doctor and Kidney doctor agreed with that determination.  It is a relief to know that was is going on has a name and it is a health concern.

Unfortunately there is no cure for Lymphedema.  There are, however, exercises, massages, treatments that can be done to alleviate some of the pain and encourage the draining of the built up fluid.  I saw my PC doctor on Thursday...she contacted Home Health through Prominence, they are to contact me this next week and provide me with compression wraps to use on my legs.  Also she will research a place that will perform massages especially related to lymphedema.  I found a therapist on You Tube that had suggestions for exercises to do, they are very simple and I think I can do them.  Actually I've found all kinds of information on You Tube which has been helpful.

My pain level can be really intense and it can be to where I hardly feel it.  My emotional levels are all over the place also.  Sometimes I have a hard time taking care of my basic needs.  I will go back to bed to rest sometimes after I've had my breakfast.  My energy level can be very low.  If I have an appointment or need to go somewhere, it has to be in the morning hours.  If I wait until the afternoon to do anything, I might as well forget it.  The swelling gets worse as the day progresses.  Driving into Carson City and then back home wears me out.  I am completely exhausted by the time I get home.  Elevating my legs helps somewhat.  No road trips for me.  I've been wanting to go to Sacramento, that's not going to happen.  I have driven to Reno although not since the lockdown.  I was able to do it although was wiped out when I got back to Dayton.

I've read some about essential oils, in particular Ginger Oil is suppose to help with swelling.  I did get some from Amazon, I'm not sure it helps much.  Denise gave me the link for the company she uses, I haven't looked at their website very extensively yet.

I try to put on a "happy" face when I'm away from home, although I don't always feel happy.  Sometimes it is hard to be upbeat when you are hurting so bad.  I'm asked "how are you doing" and my answer lately is "I'm hanging in there".  I'm glad that we can now go to church, it is something to look forward to each week.

Family History

I've been working on my Family History for the last couple of weeks and have made some interesting discoveries.  Actually I've done some research off and on over the years.  Just decided to get serious and see how far I can go.

There are 4 family names in my family and have some research on all of them.  Chung-Hoon is, of course, my father's father.  Akina is his mother.  Hulihe'e is my mother's father and Camara is my mother's mother.

I have done research on all of these families and have a bit of information on all of them.  Special finds have been information on my great grandfather Chung-Hoon and the name of the Hawaiian woman he married, my great grandmother.  Finding the names of my Chung-Hoon grandmother's parents and her siblings.  Also the names of my Portuguese great, great grandparents, Manuel Moniz and Gertrude de Jesus Sousa, whose daughter Maria married August Jacinth Camara, Grandma Hulihe'e's parents.

I've written about Gordon Chung-Hoon on my Facebook page.  He was quite the football star when he was at the Naval Academy.  His brother, Edwin, was a medical doctor who did some extensive research finding a cure for Hansen's disease.  William Chung-Hoon, Jr (Dad's brother) was the City and County Treasurer of Honolulu.  He held that position until his death.  Cousin Gordon also ran for public office.  Grandma Chung-Hoon had two brothers that held public office, one of them was a senator.

I've been using several different web sites to look for information...Family Search which is the Mormon Church's site; My Heritage that I used to do my DNA for my 75th birthday; Archives, Find a Grave and Ancestry.  I did a free trial subscription with Newspapers.com which I cancelled.  I will continue to use Family Search and Ancestry; I've found the most information on those sites.

I love searching, digging, seeing what I can find on different family members.  I'm hoping to put together a record for Denise.

My Mother's Story

Mother's Day 2020

I've been thinking about my Mom a lot the last few days.  So I thought I would share her story, as much as I know.

Bernice Kealoha Hulihe'e Chung-Hoon was born on August 8, 1914 and died on April 20, 2002.  She was the first born of David Hinae Hulihe'e and Evangeline Camara Hulihe'e.  Her siblings: Edwin Hulihe'e, Elizabeth Mokihana Hulihe'e Buinac, Agnes Hulihe'e Wilson, Bernard Hulihe'e and Ralph Hulihe'e, all of whom are deceased.

She was born in Eleele, Kaua'i and raised in Hanapepe, Kaua'i.  Her father worked for one of the sugar mill plantations and her mother was a domestic and seamstress.  She moved to Oahu to finish her high school education and graduated from either McKinley High School or Farrington High School in Honolulu.  She was an accomplished seamstress.  She would tell stories of being 10 years old, taking a part the clothing of her siblings and then putting them back together, teaching herself to sew.

She met Ernest Chung-Hoon sometime in the late 30's.  She was mother to 6 children, Edwin Ernest (1938), Puanani Rowena (1939), Violet-Elizabeth (1942), Ernestine Kealoha (1943), Agnes Naomi Piilani (1948) and Samuel (1950).  There are grandchildren and great grandchildren.

In January 1949 she started attending the Kaimuki Church of the Nazarene in Honolulu, HI along with her husband and children.  Pastor Reuben Welch led her to the Lord soon after.  She loved the Lord and it was evident in her life.  She became very involved in the ministries of the local church and served as Missionary President and Sunday School teacher of the Adult Sunday School class for many years.  She was very well known and loved on the Hawai'i Nazarene District.

When I think about my Mom and the legacy she left, it is about the beautiful creations she made using her faithful Viking sewing machine and her love for the Lord.  She read her Bible faithfully and could readily quote scripture.  She loved her family unconditionally and spent much time in prayer for all of them.  Her heart ached for some and for the lifestyles they chose, yet she continued to love them.

We spoke often on the phone and had some wonderful conversations.  I still especially miss the birthday phone calls.  She always called me on the day before my birthday.  I would say "Mom, my birthday isn't until tomorrow".  She would say "oh, what do I know...it was too dark".  I was born 7 months after Pearl Harbor and it was black out time.  I was born at a midwife's home in Kalihi and she would tell me that there was a single light bulb hanging from the ceiling with a black cover around it and the windows were covered in black.  I was born right after midnight.

When I called our first pastor, Reuben Welch, to tell him Mom had passed away, he told me she was like a sponge soaking everything in about the Lord and he was certain she was sitting at the feet of Jesus getting answers to all her many questions.  I'd like to think that is true.

Mother's Day is difficult for me yet I am so thankful for the Mother I had.  Life was not easy for her yet she did the best she could to make sure her children were fed and their basic needs were taken care of.  At times, our relationship was difficult and we actually went for several years of not speaking.  Yet in her last years, I knew for certain that she loved me, prayed for me and wanted me to be happy...most of all she wanted me to continue to serve the Lord, which I do.

And so tomorrow, Mother's Day 2020, I will once honor the woman who gave me life and in my heart thank her for everything she gave me, taught me and most of all, loved me.  Happy Mother's Day, Mom...I love you so very much and looking forward to seeing you again.