Tag: #autoimmunediseases

Living with Autoimmune Disease: Part 3

Posted on by Dr. Elaine

Complementary, Alternative, or Integrative Healthcare

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Learning to cope with an autoimmune disease(s) or other chronic illness can certainly add to a person’s stress – just what someone experiencing any illness does not need.  My number one recommendation is to be gentle with yourself.  You don’t have to figure everything out overnight.  There is a lot to learn.

I am quite well versed in Western medicine having worked as an RN for many years.  However, I am, and have always been, open to Complementary and Alternative healthcare.  I recommend you thoroughly research anything you want to try before embarking on a specific journey.  And remember – ‘do no harm’ – to yourself, anyone else, or the environment!!  Don’t get sucked in by anyone or anything that might cause harm; be discerning. If it seems too good to be true – well, you know the rest of that saying.

 To learn a bit more about Complementary, Alternative, or Integrative Healthcare and how they are different and how they can work together check out what the National Institute for Health has to say.

Complementary Ideas for Living with Autoimmune Disease

                Activity

One of the things important for everyone throughout their life is exercise, or as I now prefer to say ‘activity’.  I found being active became extremely difficult with autoimmune disease.  Before I was diagnosed I couldn’t for the life of me figure out what was going on with my body.  I have always enjoyed going to the gym and working out.  But it had gotten increasingly difficult, and I had trouble recovering from a simple, basic workout in time for my next session two or three days later.  One day I showed up at the gym and my personal trainer said “No, you can’t work out, you obviously have not recovered from your last workout.” So, it wasn’t just me being a wimp.  For the first time in my life, I got nauseated and vomited during workouts.  These workouts were not particularly strenuous, so my trainer and I were dumbfounded.  Once I had my diagnosis it all made sense.  However, I still had trouble learning to cope with my limited ability. 

Be gentle with yourself!! I know this now.  It has taken me more than 10 years to catch on to going slowly with exercise and activity programs.  Doing five minutes of exercise didn’t seem worthwhile, but that is where some people (me) need to start so they can progress to more.  What kind of activity depends on you and what you enjoy and can do.  Swimming is highly recommended, but I can’t swim, so it is not for me. Walking is an excellent activity as is yoga.  I enjoy gardening, a great activity that also gets you outside.  I must be careful though as I get carried away and often do more than is good for me for one stretch and then pay the price with several days of recovery. 

Find what you enjoy and embrace it with enthusiasm and moderation.

                Relaxation

We have learned that stress can be hard on our immune system and sometimes will trigger a flare-up.  Learning to deal with stress is important, but not always easy.  First, we don’t always recognize what is causing us stress.  I’ve previously mentioned the HeartMath(TM)  Depletion to Renewal Grid(R).  It is an excellent tool to guide you to find and name your stressors.  What will you do to help you decrease and cope with your stress? 

Meditation is often recommended and works well.  Some people find meditation difficult, so we need to think of a few other alternatives.  Personally, I prefer guided meditation to help me keep my focus.  I know I can interrupt the intrusive thoughts by acknowledging them, thanking them for the reminder, but saying goodbye for now as it is not the right time because I am meditating.  I received this message recently; meditation doesn’t have to mean sitting with your eyes closed but can be one of these activities.

blonde with eyes closed in park
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Breathwork is something I recommend and have been doing for years. One possibility is HeartMath(TM)  Heart-Focused Breathing(R). There are numerous breathwork sites online to guide you.  I found this one from the Cleveland Clinic and it gives a good background of the benefits of breathwork and explanations for several options.  

The right yoga can also be relaxing.  Find a program that works for you.  There are numerous classes available for you; in-person, online, YouTube, or on tv.  Some people are well-enough versed in yoga they can do it on their own.

Spending time outdoors can relax and help calm monkey-mind, and you get a bit of fresh air.  Some autoimmune diseases, or the medications you take for them, can make you sensitive to the sun, so be careful.  The outdoors is often a place for spiritual practices and can be quite relaxing for many people.  Take time to find what works for you.  If possible, cut a few stressors in your life.

                Essential Oils and Aromatherapy

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I enjoy using essential oils and aromatherapy.  I love a variety of scents and have long found many of them to be calming.  I first used eucalyptus years ago for my recurrent upper respiratory infections.  Lavender is another oil I have used for years at bedtime.  But I have discovered so many more.  I now have a wide array of oils I use daily.  I use several oils daily to help me relax, to boost my mood or energy, and others to help ease my physical pain.  Of course, there are other oils I use solely because I like the smell.  I’d be delighted to guide you in choosing oils for your needs (I’m a certified aromatherapy practitioner) with no obligation.

I recently intended to order DoTerra’s Serenity Oil, but inadvertently ordered the capsules.  I don’t routinely take anything to help me sleep and often have trouble falling to sleep because of my restless legs or peripheral neuropathy.  I gave the capsules a try and found they worked beautifully.  In the meantime, I have ordered the Serenity Oil to try.

Neuroplasticity

I’ve been keenly interested in neuroplasticity for several years.  Check out the blog I wrote a while ago Neuroplasticity, Development, Leadership: Do They go Together? Some things to think about: Can neuroplasticity help overcome, heal, or better cope with autoimmune disease and chronic illness?  I have included a couple of links for you to check out.  It is a wide-ranging topic.

https://pubmed.ncbi.nlm.nih.gov/31279682

https://www.sciencedirect.com/science/article/abs/pii/S0889159118312388?via%3Dihub

Neuroplasticity and Autoimmune Disease – MS

Neuroplasticity use has been researched for potential use in those with Muscular Dystrophy, one autoimmune disease. The following article has some information that you might find interesting.

https://pmc.ncbi.nlm.nih.gov/articles/PMC4347609

Neural Stimulation for Autoimmune Diseases

Find out more about how neural stimulation might be helpful. As I read and search, I am encouraged by the research being done. Stay curious.

Wrapping Up

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Being challenged with an autoimmune disease or any chronic illness might have left you feeling defeated, frustrated, angry, or not in control of your life.  That is ok.  However, you are in control.  Take time to mourn what you have lost, and then you can move on with your life.  There are numerous options for you.  You do not have to be alone on your journey.  My intention is not to gather clients, but to be available to help find what works for you.  Give me a shout. Stay curious. Most important for all of us is self-care. Be gentle with yourself, have compassion for yourself

** UPDATE – Today I received an email informing me that the name of one autoimmune disease has been updated from Sjogren’s Syndrome to Sjogren’s Disease. To learn more about why this is important and more about Sjogren’s check out this link: https://sjogrens.org/blog/2024/language-matters-the-international-sjogrens-community-changes-sjogrens-syndrome-to

Living with Autoimmune Disease: Part 2

Posted on by Dr. Elaine

Living Your Best Life: Reducing Stress – Relieving Symptoms

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Having been diagnosed with an autoimmune disease, or any other chronic disease, if you are like me, the next step is to figure out how to live your best life.  Our quality of life is rarely thought about until something changes that quality.  For me, the substantial change was not having the energy to do all I wanted and to find a way to deal with the relentless, generalized pain (feeling like I am coming down with the flu). 

You can take one of the numerous routes available to help you live the life you want, feel better, and be happy despite autoimmune disease(s), or other chronic illnesses.  There is no ‘one size fits all’ when it comes to our health and achieving our goals.  In this article I am touching on one possibility: HeartMath (TM).

HeartMath (TM)

I don’t remember how I discovered HeartMath (TM), but I am grateful I did. I have been practicing HeartMath (TM)  for several years and have found it beneficial to my physical, emotional, and mental well-being.

Being diagnosed with an autoimmune disease was not the reason I started practicing HeartMath techniques.  I became a Certified HeartMath Mentor and Coach to help myself and others enhance their health and relieve stress.  I have gotten valuable information and recently decided that sharing this information with those who have autoimmune diseases is long overdue.  HeartMath helps us manage stress. Remember, stress can worsen the symptoms of autoimmune diseases.

What is Stress?

We all have stress; it is something we experience every day.  We have big stressors i.e. illness, death, debt, and divorce that lead to negative emotions.  But happy, positive events can also be stressful i.e. weddings, birthday parties, graduation, a new job, or other celebrations.   The body doesn’t differentiate between big stress or little stress, or between happy stress, or troublesome stress.  We experience stress many times during the day, and it all begins with a flow of 1400 biochemical events in our body.  We don’t notice most of these because we get used to them e.g. traffic on the way to work, that one annoying person in the office, or the kids being kids.  For me, technology problems often start me on a path of frustration (an indicator of stress), which often leads to anger (another indicator of stress).  Stress takes a toll on your immune system, so take time to learn how to manage your stress – at least most of the time.  Even if you don’t think you have much stress in your life, chances are you can decrease the negative effects on your body by practicing some simple techniques to put you in control.  Unchecked stress will age you prematurely, your cognitive function will become impaired, your energy will be drained (I don’t need anything that drains my energy), and you will become less effective, and your clarity of thought will be impaired (https://www.heartmath.com/blog/health-and-wellness/how-stress-affects-the-body/

Effects of Unchecked Stress

premature aging

impaired cognitive function

decrease energy

impaired thought processes

Ideally, we will manage stress in the moment.  There are techniques available to help with this.  One that I especially like is Heart-Focused-Breathing and The Quick Coherence Technique(R).  This is a simple technique that can be done anywhere, anytime. I recommend doing this twice a day, but initially do it more often so that it becomes an automatic response to stressful situations. Sometimes, I didn’t think this was doing much good, then I would miss a day and that was when I would notice the difference.

Identifying our stressors can be difficult because we have learned to just live with them. If you need additional work to uncover your stressors check out HeartMath’s Depletion to Renewal Grid(R) which is a good way to determine where your stress level is at any given time.  For starters, I suggest you plot your stress one or more times a day for about a week – but longer if you would like.  The goal is to be as close to centre as possible. However, remember that our lives are constantly changing and we want to embrace all the changes and ups and downs. We want to know that we can handle the tough parts as well as the up times.

If you are someone who meditates keep it up.  The HeartMath(TM) experience is a bit different and you might want to do both. You don’t need to be on your own or in a quiet place to do Heart-Focused-Breathing(R). Take time to find ways to relax and restore your energy.

Self-Care

a woman with peebles on her back lying on white bed
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Self-care is not selfish; it is a must for health and well-being.  If you are like me, you ignored self-care for many years by working hard, taking on more, and helping others, because you thought that was what you were supposed to do, or maybe a bit of FOMO (fear of missing out).  But by not taking care of yourself you eventually wear out and are forced to slow down.  That is something our autoimmune diseases have done to us – forced us to slow down. I was stubborn and didn’t slow down enough, or take the best care of myself until I developed cancer. By the time cancer set in I didn’t have a choice, I couldn’t do much, let alone too much.

Self-care involves nutrition, activity, sleep, managing your stress, having a support system, and embracing your spirituality.  Self-care means looking after all of you.  We cannot separate our physical, mental, emotional, and spiritual health – what happens to one affects all the others.  This might sound overwhelming.  You do not have to make big changes all at once.  Start slow, with small changes, and keep going.  You want to do what you need and be successful.  With each success, you can celebrate and take the next step.  Don’t let yourself become overwhelmed.  Overwhelm can come on unexpectedly as we try to make changes to improve our health. 

Make a point of taking some time for you every day.  A few minutes of breathwork with the Quick Coherence Technique and Heart-Focused-Breathing can be good place to start. But if that doesn’t work for you find something that does work for you.

I found this “Self-Care Menu”. Give a few of these things a try during the week or the weekend. The suggestions are good for anyone, any time.

What’s Next

Watch for more blogs about other things you can try to live a better life, despite autoimmune disease.  One step at a time, one day at a time.  You deserve to be well and to have a beautiful life.   Check out some of the Resources on my website for more information and options for improving your health.

You are in control!

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Living with Autoimmune Disease(s)

Posted on by Dr. Elaine

My Story

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In 2013 I was diagnosed with an autoimmune disease, Primary Biliary Cholangitis.  I had been feeling unwell for a couple of years to the point I was afraid I was going to die without knowing what was wrong with me.  Now, years later, I am alive and learning to cope.  Though, I have my ups and downs.

Because of the difficulty getting a diagnosis and adapting to the changes in my health and my quality of life, I am sharing my story, as much as I remember of it, and hopefully will help others as they learn to live with autoimmune disease(s). I am not seeking sympathy or pity, but I seek understanding and want to share the knowledge I have gained. I want to be able to help others.

I am not an expert on autoimmune diseases.  I don’t know about all of them.  I know a little bit about the two I have and a little bit about some of the others.  Nonetheless, I know how I feel, and I am guessing many people have similar frustrations and symptoms.  By sharing I hope to alleviate some of the existing frustration, pain, and misunderstanding.

What is Autoimmune Disease?

The causes of autoimmune disease are not well understood. Our immune system, which is supposed to protect us against disease, goes haywire and attacks healthy cells instead of unwanted viruses and bacteria. A dysfunctional immune system is the basis of all autoimmune diseases despite their many differences.

With over 80 identified autoimmune diseases having been identified by scientists I am not going to attempt to cover them all. Some with which you may be more familiar include:

  • Type 1 Diabetes
  • Rheumatoid Arthritis
  • Multiple Sclerosis
  • Lupus
  • Inflammatory Bowel Disease
  • Hashimoto’s Disease
  • Grave’s Disease
  • Psoriasis

I have been diagnosed with Primary Biliary Cholangitis and Sjogren’s, and also have symptoms of Reynaud’s, which also might be an autoimmune disease. Having more than one autoimmune disease is not uncommon, as 25 percent of patients with autoimmune disease have more than one.

My Story

Me

                Symptoms and Diagnoses

One site I visited states that those living with autoimmune disease often feel alone with their disease.  Though support is often there initially and when a crisis occurs and hospitalization results, the support eventually fades.  This makes sense, as the symptoms and the illness does not go away.  I sometimes find it hard to cope, how can others?

Until I started to feel unwell, I had been very active: work, school, gym, community, family, and socializing. Though I had frequent respiratory infections I tended to work through those and carry on as though nothing was wrong.  At about 60 I started to feel exhausted.  No amount of sleep and rest would eliminate the extreme fatigue. I was working full-time teaching nursing and working on my doctorate. Working full-time and going to school was not unusual, I had been doing this for 20 – 30 years so it was not new. After a full day at the bedside with my students, I needed two to three days to recover from the extreme fatigue I was feeling. I also found I was getting even more respiratory infections, and they were lasting longer.  Overall, I felt unwell with numerous little things like sore, dry eyes, muscular pain, unrelated to my workouts, and general aches, but the exact cause eluded me.

I have a history of depression going back to my teens.  When I consulted my family doctor it was suggested that I was burned out or I was depressed.  What I was feeling was not like any depression I had ever had in the past. Maybe I was burned out, but I didn’t think so. As recommended by my doctor I took time off work and saw a psychologist. I started to feel a bit better. Then I returned to work, and at the suggestion of my psychologist got a personal trainer. I loved going to the gym, and always have.  But it seemed so much harder than ever before. I soon found I wasn’t recovering between workouts, and my Personal Trainer insisted on longer stretches between workouts.  My health deteriorated and I needed more time off work.  My extreme fatigue and general feeling of being unwell was creating havoc with my job, I knew I wasn’t at my best, and in my home life.  I often didn’t have the energy to accompany my husband to events.  Though I didn’t feel I was depressed, I was well on my way to being depressed.

I can’t remember the details, but there was some confusion, and a consult was arranged with a hepatologist was organized, which became a blessing.  Someone had thought I had hepatitis thus, I got scheduled to see the specialist and as we talked, she realized I did not have hepatitis but likely had an autoimmune disease and ran the necessary tests.  Results came back confirming Primary Biliary Cholangitis.  I got started on appropriate medication.  I was very relieved to have a diagnosis.  However, I had a lot to learn. 

The dry eyes and mouth were a nuisance, the itching was torture, and the fatigue was overwhelming.  I had trouble adapting but was happy to know I was not crazy or dying.  I could no longer work full-time as I would end up ill.  Adjusting to not working was emotionally very difficult.  I loved nursing and teaching and had hoped to continue into my 70s.  Alas, that was not to be the case. 

Life continued. In 2019 I was diagnosed with a couple of cancers and needed surgery and chemotherapy.  Shortly after my chemotherapy was completed (2020), I developed chest pain, thinking I was having a heart attack I went to emergency.  As it turned out I was not having a heart attack, but I had peri-carditis.  A brilliant cardiology fellow tested me for Sjogren’s, another autoimmune disease.  People with Sjogren’s sometimes develop pericarditis.  The symptoms of Sjogren’s are similar to Primary Biliary Cholangitis (PBC), dry eyes and mouth, itching, fatigue, and muscle and joint pain.  Off to another specialist and treatment was begun. 

                My Journey and Quality of Life

I had a great deal of difficulty adjusting to the slowing down.  I could no longer take care of my home and yard to my liking.  Every time I started an exercise routine, I would end up exhausted and in pain.  It would take me anywhere from a few days to a week to recover.  Then I would try again.  And the same thing would happen.  My doctors recommended exercise, and I know it is important, so I kept trying.  

potatoes beside stainless steel cooking pot
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My quality of life had deteriorated.  I could no longer socialize the way my husband and I both enjoyed.  I remember cooking Christmas dinner for the family and ending up so tired and in such pain that I was not able to join the family to eat.  I was on the sofa in pain.  Of course, my grown children and husband had helped, but it was still too much.  Vacations became a problem because once again I was too exhausted to do all the things we enjoyed, just the travel part required a few days to recover. 

We hired help for the house and yard.  We are so fortunate to be able to afford to do that, not everyone is so lucky.  But I especially missed the time in my yard and the socializing that we enjoyed.  Despite getting help with these things there was still a lot of adjusting and many days spent in pain feeling exhausted.  Dinner out with friends often ended early for me.

I chatted with my family doctor and got a referral for mental health support to help me adjust to what needed to be my new way of life.  This was helpful, but I still struggle with wanting to do more and suffering the consequences when I do too much.

I continue to struggle with feeling lazy, though I know I’m really not, and that I am doing the best I can with what I have at the moment.  Some days I get lots done, but that usually results in a few days of pain and extreme fatigue.  But I also know that is a choice I have made.

                Changes to How I Live

There are probably more changes than I remember.  Most significant is having to retire and not being able to have the social life with my husband that we had enjoyed for so long.

I miss my work.  I loved being a nurse and I loved teaching nursing.  My interaction with patients and students was a highlight of my career.

Israel 2018

My husband and I continue to socialize but not as much as we once did.  I find travel very painful, and it causes my husband a lot of emotional pain as he sees my discomfort.  However, we are adjusting.  And again – some days are better than others.  Nonetheless, I remain grateful to be alive, to have a wonderful husband and family to support and care for me, and to be able to enjoy my home and dog. Yes, I have had to slow down, life has changed, but for me, it is better than the alternative.

Though many people are able to carry on and achieve their life goals I have not found that.  I also know that I am better off than many others.  Though my symptoms vary from day-to-day I am able to function quite well with some planning.  I have learned more about self-care and what that really means – a healthy diet; adequate, good quality sleep; regular activity; and social and emotional support.

I do life, wellness, and leadership coaching. I have immersed myself in learning about essential oils and aromatherapy.  I have been on a spiritual journey and have learned about myself.  I enjoy my periods of meditation and have found comfort in repeating affirmations.  I have come to realize the importance of positive self-talk and training the brain.  Neuroplasticity is another area that I have delved into and found very helpful.

One of the first things I did following my diagnosis was embark on learning about HeartMath.  I am a certified coach, but most importantly my practice has helped me learn how to maximize my energy and make the most of a variety of daily situations.  We all have different experiences in life and each of us needs to find what works for us – one size does not fit all.  But I do encourage you to be curious and find what works best for you.

Treatments

Obviously, with so many different autoimmune diseases there are oodles of treatments.  Seek medical guidance and seek out support groups.  There is a great deal to learn.  Regardless of medical treatments, self-care, including nutrition, sleep, activity, and mental and emotional care remain important.

Don’t hesitate to seek out alternative therapies and treatments.  Do what is important to you.  Massage, exercise, aromatherapy, yoga, acupuncture, and changes to your diet, are all possible areas you might want to examine.  

You might be prescribed medications and need numerous over-the-counter (OTC) medications to cope with a variety of symptoms.  Discuss medications with your healthcare team.  Make sure that what you choose for medications, treatments, and care will not cause harm.  Be safe in your self-care.

Resources

These are just a few resources to get you started.  Don’t hesitate to search for your specific disease.

If you would like more guidance and support, contact me via my website: www.leadnurses.com

Autoimmune Association: https://autoimmune.org/disease-information/

Global Autoimmune Institute: https://www.autoimmuneinstitute.org/

Johns Hopkins: https://www.hopkinsmedicine.org/health/wellness-and-prevention/what-are-common-symptoms-of-autoimmune-disease

National Institute of Environmental Health Sciences: https://www.niehs.nih.gov/health/topics/conditions/autoimmune

National Organization of Rare Disorders: https://rarediseases.org/organizations/autoimmune-association/