Chapter 8 - Notes From the Left Hand

         

 

Notes from the Left Hand.

         

“Learning to write with my left hand seemed to be answer when my right hand was out of commission.”

One thing about writing with my non-dominant hand, I didn’t waste words.  Here are some left-handed notes from an early action plan book.  

•        Monitor progress

•        Action plan for successful alternatives

•        Problem solve around failures

•        Build on success

•        Practice assertive interactions

•        Remember that pain is neutral   

•        Support my healthy lifestyle

•        Practice active relaxation

I have another note that is dated three and a half years after my lymphedema started.  It is fairly readable, written left handed and it was interesting to me as how it ties into the progress I had made to that point and what goals I had.  It tells me that the action plan concept was still being used long after I was first introduced to it. 

What I want to accomplish

•        An interesting life

•        A healthy arm life

•        An overall sense of wellbeing

•        Specifically satisfaction of each day’s activities to the breaking of habits that neither produce something nor relax the mind

•        Keeping sane & real & true to myself

There were more things that I learnt to do with my left hand than just write. I learnt to deal cards with my left hand and left hand only.  We play a lot of cards and I couldn’t bear having someone shuffling and dealing for me. 

The other thing that I learnt to do left-handedly was to shoot my pistols, rifle and shotgun.  The process there was to break each action down into left-handed steps and again practice.  It became habit and ‘natural’ to do.  The reward was that I was able to rejoin the Cowboy Action Shooters who are an awesome bunch that I had sorely missed ‘playing’ with.  I share more of this in the segment – Being Well Physically. 

I can only assume that I could have trained myself to do other things left-handed and well if I had to.  However, as time passed, I gained right hand health and was able to resume right hand activities - always with moderation.  For the longest time, I switched between hands to maintain function and also for pain management.

 

 

“Every intersection in the road of life is an opportunity for a healthy decision.  Change is possible.”

 

 

 

 

 

 

Chapter 9 - On the Hunt for Resources

 

On the Hunt for Resources.

 

 

I’m a voracious reader and I certainly found resources specific to lymphedema. 

There are some very good books on lymphedema out there.  There is Canada’s Lymphedema Magazine, Pathways.  There are provincial associations, accessible via the Internet, and there is the Canadian Lymphedema Framework – www.canadalymph.ca - an excellent source of information. 

I also developed an attitude of borrowing tips and tricks.  Lymphedema is a chronic condition, so information aimed at anyone with chronic conditions could apply to me.  I became a vacuum cleaner for tips.  I read about healthy eating, personal motivation, overcoming adversity, positive thinking, problem solving, habit forming, optimism, and relaxation.  I’ve been inspired by those around me, people with normal eating habits, people who live well despite their challenges, as well as people who achieve great things.   

I’m looking at the pile of resources I gathered and I’m thinking of what I want to share with you.  Then I realize that a lymphedema patient really needs to make a personal decision about how much information they want or need. 

I need information to aid me with some objectives. 

I do not want to aggravate my lymphedema conditions, so I need information to assess the suggestions that come my way.  And I want to be conscious to recognize potential areas of concern.  These concerns have included air travel, car travel, heat, alcohol consumption, saunas, electrolysis hair removal, tattoos, medical procedures and activity and clothing choices. 

I don’t have to know the answers.  I just have to know that I need the answers.  I’ve written about the questions that I needed answers to.  My advice is that you need to own your journey.  I encourage you to seek your own answers, to assess the information prudently and to design your life to be a healthy one.  The diagnosis of lymphedema gives you very real motivation.

 

“Look for role models.  Discover good sources of information.  Managing lymphedema is a learning experience and teachers are needed.”

Chapter 10 - One Easy Thing

 

 

One Easy Thing 

 

As I went through my lymphedema as a new thing year, I had to learn quite a few new things.  I certainly had those days when my rebellion was fully bloomed.  I simply didn’t want to change.  I had days and weeks where my old habits lead me astray and my will-power deflated. 

My self-confidence was pretty weak, but the thing that helped was the ‘one easy thing’.  If I could see one simply, tiny step in the right direction, I would try to do that.  If I did it, I gave myself heaps of praise.  I remember thinking that every big change that I attempted could be broken down into tiny easy steps.  All I had to do was do those ‘easy’ things. My job was to make each step doable, somehow, some way. 

The self-praise seemed a little silly but I told myself that I have managed a step (albeit small) and I could feel good about this.  I found as I focused on my mini-success I was encouraged.  This worked so much better than adding up all the ways this was hard, and all the challenges that lay ahead and how unlikely I was to succeed.  Simply put, this exercise of self-praise framed my actions in a positive light. 

So many times the way to move forward was not a bigger whip, but the gentle knowledge that the best I could do was keep on.

I also kept as my philosophy that to keep on doing the same thing and expect different results is insanity.  So I would try different things until I found the thing or things that worked.  It is not essential that you know the right action.  I experimented (especially in regards to challenging my eating disorders).  Simply put, I was building self-trust. 

 

 

Chapter 11 - Becoming an Active Self-Manager

 

         

Becoming an Active Self-Manager

 

The advice that I was given by the medical professionals dealt mainly with lymphedema as a physical condition.  I share some of this with you, carefully, because I am not a professional, nor am I qualified to assess your situation. 

It seemed at the time that I had to gather my management information piece by piece.  I wonder now if I simply had a slow absorption rate.  I may have not been able to understand or utilize the advice because of the stress and grief I was experiencing.  My emotional well-being needed attention as well.   

I was fortunate that I had great flexibility in my life, I was retired and I had a partner that would share the household duties.  I am grateful.     

In the end, I realized that self-management skills are learnable and with my back against the wall, I had no doubt that this was the time to learn them.  This list outlines self-management tasks that I felt applied to my situation.   

 

1.     To manage my condition.

2.     To function in my chosen roles.

3.     To manage my emotional well-being.  

4.     To find the resources and information that would enable me to be an active and effective self-manager. 

As everyone, I had some choices in what type of self- manager I would be.  I chose to be active and effective, to manage my lymphedema as I should and to get on with my life.  I could as easily choose to make lymphedema the center of my existence.  I could have demanded sympathy, I could have chosen to be dependent and expect others to accommodate me.  I could have become the pathetic victim.  I could have withdrawn from life. 

I chose instead to pick up the tools that I was taught - the action plans, the problem solving techniques.  I chose instead to use my writing skills, and my research to accept new ideas and to become the type of self-manager that I wanted to be. 

Just a note about the research – I approached everything with some skepticism but I also tried to be open.  I used this as my criteria, the advice should not harm.  If it helped I would know it and I would adopt it.    

The task of self-management, especially as it included addressing my disordered eating, seemed monumental.  That proved to be exactly the ‘gift’ that I needed to move past the challenges to build a better future.  When the tough started, I found the strength that I needed.  Thank you, lymphedema. 

 

“I assumed there would be an answer and I would find it.  It surprised me how many times that answer was in my own thinking.”

 

Chapter 12 - Doctor, Doctor

 

Doctor, Doctor.

 

I had to move past my doctor to seek the help with my lymphedema that I needed.  I did that and I got the advice and support that I needed.  So far so good.  I’ve always been able to access my team in the city that is 2.5 hour away.  I haven’t been in an emergency situation where the physician on call needed to know about lymphedema.  I’ve always been conscious and knowledgeable enough to prevent harm being done by the medical profession. 

There is no guarantee that I will always be so lucky.  I knew enough to challenge the worker that thought she would have to draw blood from my affected arm and I was prepared to stop her if she proceeded.  No one has argued as I’ve directed their blood pressure cuff or their needles away from my lymphedema arm. 

The closest I’ve come to harm was from a dentist who thought he could tap my arm with his pencil as he quizzed me about my cancer checkups!  He did no harm with his pencil but had my pain level been higher he would have. 

“How do you know that I’m not in pain?” I asked, because despite his white coat and supposed professional conduct he was being very ignorant.  Then I asked him if he wanted me to punch him.  Okay.  It was said before I thought about the words.   I am still unsure of how I should have handled it or what action I should have taken after.  He was crossing a number of boundaries and the unexpectedness of this situation threw me.  Why would a dentist need to know if I got yearly mammograms?  What right did he have to tap on my arm to ask why I wore compression garments? 

Physicians are sometimes unaware of the condition and some view it as an untreatable cosmetic concern of no particular interest to them.  That is a frustrating situation for the lymphedema patient, who sometimes is not properly diagnosed, as often times they are given very little in the way of helpful management suggestions.  Patients can be harmed by poor care. 

I’ve read that the average time that a medical professional receives in lymphatic vascular system is about 15 minutes out of their four years of training.  The misconception is that lymphedema is a rare or unimportant condition when in fact it is common and serious.  Also it is poorly recognized and unacknowledged.  Work is being done to change the situation and make lymphedema knowledge widespread and effective. 

So like the general public, the medical profession needs a lot more education to understand lymphedema.  It may have to start with one patient talking with their doctor, but it can be and should be much more. 

There are people working on that very thing and that is why the provincial associations of lymphedema serve such an important role.  These provincial associations are often led by people who have personal lymphedema experience.  Their sole purpose is to support patients and their caregivers.  I support them and their efforts, I hope you can too. They are a valuable member of the lymphedema team. 

 

 

 

 

Chapter 13 - Lymphatic System Creatively Explained

 

 

 

Lymphatic System (Creatively) Explained.

 

I recall being told in a grade school health class that my blood carried oxygen to all parts of my body and that it also had something to do with cleaning away dead cells.  If pressed I may have been able to come up with the terms circulatory system and glands, as something that might swell if you had infections.

I don’t know if this lack of knowledge is the norm but the physiotherapists patiently explained what I didn’t know.  (Note – I have forgotten some of the terms and my explanation has morphed a lot, but I hope that it gives you a bit of an idea, even with its inaccuracies.)

The blood is pumped through the vessels by the heart’s action.  Swish, swish, swish.  A component of the blood, a very fine liquid, seeps through the capillary walls as the cleaning agent.  This fluid becomes thicker with each dead cell it gathers.  It can’t return to the bloodstream, so this thick and dirty fluid is transported by the lymphatic system which works in a different fashion.  I think of this system as being similar to how sap runs in trees, no heart is pumping but the liquids still move.    

Within the body are several clusters of lymph nodes that are in charge of taking care of this dirty lymphatic fluid, so that it does not cause infections.  It is a pretty efficient system normally.  The clusters I speak of are located in the armpits and the groin area and each cluster is managing a specific limb.  (Lymph node clusters also are in the neck.) This means that my lymphedema is specific to my right arm, because it was my right armpit that had lymph node removal.   I do have approximately half of the lymph nodes in my right armpit, so I still have some lymphatic function. 

My blood pressure has to be controlled.  Remember that fine liquid that seeps through the walls of the blood vessels?  A higher blood pressure means that more liquids will be pushed through, so blood pressure normalcy is vital to not burden the lymphatic system.  The compression garments that I wear are basically designed to push back, to keep those fluids in check.  It is also important to maintain meticulous skin care because extra fluids are sent to wounds and injuries. 

The concerns with fluids that gather and are not handled by the lymphatic system are twofold.  First, the fluids are dirty and can cause infections.  Cellulitis is a real and dangerous possibility.  The second effect of gathered fluids is scarring.  Those scarred tissues are even more likely to retain the fluids. 

                                                                                                       

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Chapter 14 - Cellulitis

 

Cellulitis

 

 

“Recurrent episodes of cellulitis can start a vicious cycle of infection and worsening edema.”   

Cellulitis is a real concern for patients with lymphedema, as it is for others who are at risk.  I know someone who had cellulitis has and because of that experience I feel I may be able to recognize cellulitis early.  However the signs and symptoms of infections are many and vary.  Pain, redness, heat and swelling are common, but simply feeling unwell for several weeks may also indicate infections. 

Cellulitis or erysipelas – an infection of the skin and the tissues below the skin - are considered a common complication of lymphedema. Recognizing cellulitis and seeking treatment early is vital.  It is a very serious infection that often requires hospitalization and an aggressive course of antibiotics.  A lymphedema patient needs to be vigilant to prevent cellulitis or to manage it, if and when it occurs.  

Practices that reduce your risk of this complication begin with control of the swelling of the affected body part with compression garments.  It is important to maintain soft and subtle skin through effective cleansing with mild pH balanced cleansers and equally important, complete drying of skin, between toes, in crevices, nail beds and skin folds.  The use of non-scented hypoallergenic moisturizer is recommended. 

Skin and nail care are not just cosmetic concerns; they are listed among the key areas to manage if you have lymphedema.  Fungal infections and areas of dermatitis need medical attention.  Minor cuts and scrapes should be cleaned immediately with lots of water and treated with antibiotic cream and then covered for protection. 

It is also important to keep eating healthy and to exercise regularly.  A healthy body is better able to fight infections. 

For me the possibility of cellulitis is very sobering and there have been times when I was overwhelmed emotionally by my potential future lymphedema complications.  As I adjusted, I have begun to think of cellulitis as a huge reason to be compliant with my healthy routines.  I may develop cellulitis, despite my best efforts.  However, it won’t be because I was ignorant of the risks, nor will it be that I was in denial.  In the meantime, I recognize that cellulitis risk is a huge deterrent to my relaxing any part of the healthy routines I have adopted.  That is a good thing.