Coping With Lipedema While Caregiving

I am back after a long and quite unexpected hiatus!!! To say the year 2020 was a year like none other is quite the understatement! Never would I have predicted all the twists and turns life took for my family and me. In this post I would like to offer an unique perspective on “Coping With Lipedema While Caregiving” where I found myself at the beginning of the year.

The year 2020 has certainly thrown most of us for a loop…and there is still two months to go! I have observed either people have adapted positively to the pandemic situation, meaning they have found ways to be productive and healthier, or they have found themselves scrambling regularly to adapt to evolving life circumstances.

This year has certainly brought me to my knees in prayer many times and grown my faith incredibly. I have never cried this much, experienced this level of pain and heartache nor empathized with a world crumbling to its core around me. And yet, there was times of discovery, laughter, heartwarming remembrances, intense love and lots of patience building!

Read on to see the impacts of this most turbulent year and the effect it has had on someone like me suffering with chronic conditions, such as lipedema, lymphedema and other co-morbidities.

How It All Started

My Mom - Esther Harris
My Mom and Namesake Esther Harris

Well, my hiatus actually began in September 2019, Labor Day to be precise, when my 76-year old mother fell and broke her hip in my driveway. She moved in with us for six weeks to recuperate and did a remarkable job healing faster than the doctors expected, thanks largely to her hypermobility!

While she was in the hospital they put her on oxygen due to a new diagnosis of emphysema and potential COPD (chronic obstructive pulmonary disease). They also put her on blood thinners for her lung embolisms and a small unknown mass in her right lung.

(Yes, my mom was an avid smoker from teen years who did quit cold turkey on the day she was hospitalized for the broken hip. She just never thought to quit when she was 50 and suffered through breast cancer, a mastectomy, chemotherapy, radiation and reconstructive surgery! Perhaps if she did, she might still be with us today!)

Despite all her health issues, mom was able to prepare a magnificent Thanksgiving and Christmas dinner and festive atmosphere for the entire family! She knew it was probably going to be her last set of holidays in her condo as she was resigned to selling it and moving in with us permanently. Little did she know what lie ahead…

2020 – The First Quarter

New Year’s Day brought lots of problems with heart palpitations, flutters and irregularities that continued for a week or two before mom sought medical attention. By the end of the month she would be in the emergency room with extremely high uncontrolled heart rates and rhythms resulting in a diagnosis of atrial fibrillation (a-fib). It also meant she would be on constant oxygen to help ease the COPD symptoms. This sealed the deal that she could no longer live alone and would be moving in with us next month.

After a trip to the pulmonologist, a lung scan and a lung biopsy, it was confirmed mom had advanced lung cancer (stage IIIB). My middle sister flew out, helped clean out mom’s condo in preparation for sale and moved mom into my home. Her condo went up for sale just as the COVID-19 pandemic was starting to impact the world’s health and economies. It was a home she cherished for 19 years surrounded by lots of friends.

We engaged an oncologist who approved mom for chemotherapy and she proceeded with treatments in March. It was increasingly difficult for mom to get around from the fatigue of the chemo and COPD. She could walk limited distances with a walker and required a wheelchair for outside visits.

If we add insult to injury, mom’s MRI scans showed a large brain aneurism and substantial evidence of sub-acute mini (non-damaging) strokes. Another scan showed a 12mm kidney stone, which thankfully wasn’t giving her any immediate pain. Through all of this my mom remained a fighter! She wasn’t going to let any of these things stop her from living the best life possible, hopefully a bit longer with treatment, so she could share more time with her children and grandchildren. I can still hear that adamant voice telling everyone she “was not a quitter”!

Coping With Lipedema While Caregiving – The Effects on Me (Mom’s Caregiver)

Lipedema pain and inflammation

I was mom’s primary caregiver, which put all kinds of stress on me physically, emotionally, financially and socially, not to mention the other members of my house. The pandemic did not help things as mom was already a “high risk” patient, so every move had to be well planned to avoid unnecessary exposure for her!

I fell out of my eating plan and fasting schedule and could no longer maintain a lymphatic pumping and compression wrapping regimen given the time and energy required to support mom’s increasing medical needs. After a couple weeks it started to take a toll on my body. The leg swelling and pain returned making mobility more challenging.

My body also started reacting poorly to the increased carbohydrate intake and lack of fasting benefits, which we all know increases inflammation and pain. There were days of headaches, varying in intensity, and mood swings brought on by poor eating habits, lack of solid sleep and increased demand for physical activity. I did try to mitigate some of these issues by taking my daily supplement regimen and ensuring my electrolyte levels were stable.

I am also thankful I have a few very good friends who were always there to lend support, in any form needed, to keep me going so that in turn, I could keep mom going, too! These special people are absolutely essential for my overall well-being and were there when I needed them the most! I have much humility and gratitude for their friendship and support in my life!!

But Wait, There’s More?

Did I also mention I had filed for divorce and was trying to negotiate a settlement during this time, too? As you can imagine, all these stressors made treating my lipo-lymphedema nearly impossible to manage and I gained back about 20 pounds. My legs swelled up badly and the fat and joint pain was nearly unbearable at times!

2020 – The Second Quarter

Mom successfully made it through chemo, but not without contracting bronchitis and obstructive pneumonia after each treatment. We managed to treat both during her trips to the emergency room, where she was tested thrice for COVID-19. Happy to report she was negative each time!

Once mom regained her strength, she was approved for radiation treatment in the hopes of significantly shrinking the tumor. My middle sister flew back out to help mom to her daily radiation appointments and to wrap up the sale of mom’s condo. She suffered additional bouts of bronchitis and barely made it through radiation.

Mom was essentially flattened for the two weeks following radiation. The toll of chemo, radiation, COPD AND the chronic respiratory illnesses had taken quite a toll on her poor wracked body! Being the fighter mom was, she slowly started to make a recovery after two weeks where she was eating more and moving around much better with her walker. It looked like we were finally turning the corner in a positive direction!

However, no one saw the low flying condor on approach. Sadly, the day mom completed the sale of her condo was the same day she suffered a CVA (cerebral vascular event) – a full stroke. It left her with a very weak right side of her body, loss of sensations to her hands and fingers, difficulty speaking, and some memory loss. This was emotionally devastating to everyone, especially after all the progress we saw in the past week!

She could no longer write anything intelligible or use her computer. Eating was a HUGE challenge even when we adapted her silverware with large foam grips. Walking became difficult as she winded easily and was unsteady on her legs. She started slurring her speech and at times stopped talking mid-sentence, not being able to recall her thoughts or memories. Even as discouraging as things looked, she still vowed to keep fighting!

Coping With Lipedema While Caregiving – The Effects on Me (Mom’s Caregiver)

Pain and Inflammation

My work as caregiver now included managing ALL her affairs as she no longer could trust herself to remember things and she lacked the capacity to successfully attend to correspondence. My youngest daughter, who had just finished her junior year of high school, agreed to help provide care and together we successfully managed mom’s increasing needs.

Stress levels continued to rise and were sustained for longer periods of time to manage mom’s care, her affairs, my own household affairs, and my failing health. The increased cortisol levels and erratic eating patterns created higher levels of inflammation and pain throughout my body. At times I cried, not only for the eventuality of the situation but, for the increased physical pain and mobility issues I was experiencing. Too many stressors can wreak havoc on a body already suffering with one chronic condition. Imagine the intensity of pain with multiple chronic conditions!

The only upside to mom resting more is that it gave my daughter time to assist with my lymphatic pumping and compression wrapping, which were so badly needed after months of neglect! Unfortunately, there was also significant pain associated with aggressively trying to reduce the lymph fluid build-up in the legs, arms, hips and abdomen after a long cessation of these activities!

2020 – The Third Quarter

Providing mom’s care got tougher with each passing day as it became evident her body could no longer fight or recover. Mom slept in the same room with me during her entire stay and it was essential I be near her at night to provide for her increasing round the clock needs. She found it very comforting to know I was there for whatever she required!

In mid-July mom could no longer get out of bed and I made the decision to ask for hospice assistance for her advanced care. Both of my sisters flew out to stay with us to help with mom’s care and to be with her at the end. Unfortunately, my youngest sister had to return home several days before mom’s passing. Mom held on for four more days and passed while in the arms of my middle sister and me.

I consider it a great honor and privilege to have provided for my mother’s needs – physical, emotional, financial and spiritual – since September of last year!! I loved (still do!) my mom dearly and she was always there for me and my family! She was a strong Christian woman whose faith never wavered, especially during all these health challenges. She was an inspiration to all those around her and one of my greatest supporters, particularly given all my health challenges! She will be missed deeply!!

September proved to be just as stressful as the previous eight months. We flew my mom back from the west coast to the east coast for burial in the family plot.

Virtual Celebration of Life Service for Mom

We also put together a virtual Celebration of Life service for her using the Zoom technology. This impersonal event appeared to be so limiting in sharing our collective grief, but was our only option given the social distancing policies during this pandemic. However, we did come to realize that using this technology did allow ALL our family and friends, who are scattered from coast to coast and in between, to participate together where an in-person event would have excluded many people. So, strange as it sounds, we were ALL able to properly honor and collectively pay our final respects to mom using this modern technology!

Coping With Lipedema While Caregiving – The Effects on Me (Mom’s Caregiver)

My health was set back a bit during this time. While I wouldn’t change any of the level of care provided to mom, I should have found a better way to care for myself as well. This included choosing to eat differently than mom (I am low carb while she needed to be high carb) and on my schedule, which promoted intermittent fasting. I should have also found a way to maintain my pumping and wrapping schedule to reduce how much my legs swelled.

As a caregiver you get fixated on providing the best care possible for your charge that you often (or partially) neglect your own care, especially if you suffer from a chronic condition(s). You have to remember to put your own oxygen mask on first so that you are around to put the mask on others!

I also found out you need to have a relief team, other people who can fill in as necessary so that you can provide the required care for yourself. This was extremely difficult during the pandemic as no one wanted to risk going out nor did we want to expose my high risk mom to whatever a stranger would bring into the house, even if they were part of her home health team! My girls were busy distance learning, but did pitch in whenever possible, which was a huge relief for me. It wasn’t ideal, but we all made it work for mom.

But Wait, There’s More?

Two weeks after my mother passed, my divorce became final. It was not a pleasant experience, as I imagine most divorces are not, The process and finality just heaped more fuel onto a fire that was already burning very hot for me. However, I worked even harder to try and maintain my lymphatic pumping and compression wrapping to keep pain levels under control and facilitate better mobility. The eight months of sustained high cortisol levels was also not helping my body either by adding excess weight to my already taxed system!

To add insult to injury, I was also battling an infected back molar during mom’s last two months of care. I finally made it to the dentist after she passed and discovered the tooth could not be saved. I had to have it surgically removed along with a small amount of the jawbone. It has taken almost eight weeks to heal, but I feel much better knowing the infection has been cured.

Even More Challenges!

Wildfires in Clackamas, Oregon
Wildfires in our County not far from my home!

At the beginning of September we put our family home up for sale. Two weeks into our listing we had to temporarily suspend our listing as our State’s worst wildfire season moved into populated areas. Our neighborhood was placed on level 3 evacuation status (start preparing to leave), so we packed up all our necessities in preparation of a possible evacuation. Those with disabilities were encouraged to evacuate ahead of the general public, so we waited for a couple days to anxiously watch the progression of the wildfires!

Thankfully, the winds died down and the firefighters were able to gain an upper hand in containing the wildfires just outside some of our populated cities and towns. The air stagnation now caused respiratory issues for many in the county as thick heavy smoke, much like dense fog that does not dissipate, remained in the area for over a week. (At times I couldn’t even see the end of my neighbor’s property, the smoke was that dense!) We were advised to wear our masks INDOORS too, to help alleviate respiratory distress.

This was a very challenging time, especially for those of us with co-morbidities that react unfavorably to these type of sustained conditions. I am talking about those with histamine (mast cell regulation) issues, stomach (leaky gut, IBS, etc.) problems, respiratory ailments and sensory challenges. The constant inhalation of the smoke gave my family and me near constant headaches, digestive problems, insomnia, and bad output problems for over a week until we could clear the toxin from our systems.

2020 – The Fourth Quarter (Updated to 12/31/20)

I will tread very lightly this quarter given how this year has unfolded so far. We are still working on the sale of our home in post-divorce activities. The kids continue distance learning until at least February 2021 and I now need to settle my mom’s estate. There is no shortage of cleanup activities on top of daily life living with a pandemic!

Weight loss tools

Let me share a little good news after everything that has happened this past year. I have lost the 20 pound I put back on during mom’s care and have been able to shed an additional 22 pounds since my last posting! I am absolutely thrilled to be turning the ship back in the right direction so I can finally resume work on me now!

I have also added three and five pound hand weights to my daily routine to help improve arm strength and tone while reducing any “normal” fat in the batwing (upper arm) area. There is a fair amount of lipedema in the arms, but it is amazing to see the transformation with the loss of normal fat.

I am working my way back to a ketogenic way of eating as it has been the most beneficial to my overall health objectives and weight loss efforts. Currently, I am eating low carb, which is still beneficial, but I need to commit to eating healthier for me for the long run. I also plan to reincorporate at least one day of fasting each week and maintain my 16/8 intermittent fasting window.

Not the End of Challenges for the Year!

Thanksgiving was a challenge without my mom, especially as she always took pride in preparing the family feast for all of us. My youngest daughter, a budding chef, did her grandmother proud and prepared a feast my mom would have been proud to eat. It was a somber celebration, but we were all so thankful and honored to have been there for my mom when she needed her family most!

However, two days later I would wake up in severe pain that was relentless. I am all too familiar with this pain from the past – a kidney stone! I was in the emergency room 24 hours later with an 8mm stone stuck in my ureter requiring emergency surgery. In addition to the stuck stone I was also suffering with two bacterial infections thus causing a sepsis situation. I made it through surgery to insert a stent, but was hospitalized for a couple days with complications. It was scary how fast this situation deteriorated! I had low oxygen and blood pressure, was severely dehydrated and needed potent IV antibiotics to recover.

I was back in the hospital the week before Christmas to have a lithotripsy procedure on the stuck 8mm stone and the three stones sitting in my kidney waiting to wreak havoc (two 8mm and one 10mm). Surgery was complicated given my Lipo-lymphedema and comorbid conditions, specifically MCAS (mast cell reactions) and Celiac disease. I will say that my Urologist, my pre and post operative teams and support staff were all FANTASTIC in identifying, mitigating and caring for my special needs!! The surgery was a complete success (all stones turned to dust) and I went home that evening in minimal pain.

I had the temporary stent removed the first week of January and was given a clean bill of health. What a way to end a VERY turbulent year! God has been with my family and me throughout everything we endured in 2020. Our faith has really grown this year and we have learned to take nothing for granted for tomorrow is never guaranteed, especially during this pandemic!

Summary of Coping With Lipedema While Caregiving

“Life is what happens while we are busy making other plans.” This was never truer than what my family and I experienced these past 14 months! While we were busy with our plans to pare down our house and ready it for sale in 2019, God had other plans for all of us. Who knew that my mom’s fall and broken hip last year would be just the tip of the iceberg for everyone.

My mom has repeatedly told us that “family takes care of family” and I have always believed it. She helped care for her mother in her end days and I wanted to be there to provide whatever care was needed for my mom, too. It was an honor and privilege to serve her from her initial hip break all the way to her passing and laying her to rest!

Caring for a medically complex loved one can be extremely challenging but even more so for a disabled person coping with their own chronic condition(s). Here are some key issues that I learned in my role as primary caregiver that may help others who find themselves in the same position.

  • If possible, try to prepare a plan prior to becoming a caregiver. This will help guide you through the myriad of tasks, services, medical equipment, professional staff, living arrangements and financial concerns that will be required during this time.
  • Talk with family members to define expectations, roles, communication strategies to keep everyone abreast of evolving health conditions, and a plan how to proceed if the unexpected happens. (This will save you much contention and resentment in the long run!)
  • If possible, execute all legal documents to address unexpected changes in health conditions for both your charge and yourself (e.g. a will, power of attorneys (general and financial), advanced directives, POLST forms, etc.).
  • Line up qualified and trusted relief care that can help you accomplish required tasks for your charge and provide you a break so you can properly care for yourself. (If you don’t care of yourself, you won’t be available to those who need you! Learn more about caring for the caregiver.)
  • Create a plan of care for your body, to include lymphatic pumping, doning and doffing compression garments, practicing good skin care, MLD (manual lymph drainage) and performing your preferred type of exercise.
  • Create a plan for your nutritional health, to include preferred way of eating (e.g. keto, paleo, low carb, etc.) as well as any planned fasting or intermittent fasting periods. (This could include someone else assisting with shopping, preparing or even cooking some meals for you.)
  • Create time for social visits or outings to help relieve stress. (This has been extremely challenging this year with the COVID-19 pandemic and the resulting social distancing and quarantine policies!)
  • Create a quiet space(s) within the home for yourself to relax, read, meditate, exercise or just unwind. (This has also been extremely challenging with the COVID-19 pandemic and children at home with distance learning mandates!)
  • Do not blame or be harsh with yourself for backsliding on your regimens. Sometimes they cannot be helped under extraordinary conditions. Be kind to your body and your spirit and remember to thank them for doing the best job they can during this very difficult time! There will be time to recover once the event resolves itself.
  • Infuse as many situations as possible with love, happiness, laughter, humility and gratitude! It is good for your soul and uplifting to others around you, especially those experiencing difficult times!

I have updated this post now that the year has ended. I am happy to report that with lots of hard work and dedication, I was able to make further progress in managing this condition! It was also my goal to bring peace back into my family and my life after a year of trauma, drama, high stress, pain and sorrow we have all suffered this year!

To all my beautiful lippy sisters out there who find themselves in caregiving roles, hang in there and know it will get better! Seek out physical and emotional help. We are a strong tribe and can get through anything! We have weathered lipedema (and its co-morbidities) on a daily basis – that takes real strength, courage and perseverance. You’ve got this and I am here to cheer you on and be a resource for anyone who needs it!!

To Your Improved Health!

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