Energy Conservation for the Tired and Achy; The Best Suggestions for Saving Your Strength

If you are new to the RA journey or your disease is still in the invisible stage this still applies to you so listen up! There are some common sense inventions out there in the world that can save your limited and valuable energy. I am into the very visibly disabled part of my journey so I don’t really feel self conscious anymore but I used to. If you are relatively young and are able to walk with a fairly normal gait this still applies to you. Are you listening?

First, talk to your Doctor about getting a Disabled Parking Permit.  Don’t let the picture of the person in a wheelchair on it dissuade you.  You are also deserving if you find you can get yourself into a store reasonably well, even walk around in said store for a time until your energy levels drop and/or pain levels increase. Then getting though the check out and back to your car is a lot harder than it is for most folks.  Remember also that you still need to have some energy to get home and in the door and on with the rest of your agenda.  When I first got mine I was battling both RA and severe sciatic nerve pain that is related to the RA plus other factors.  At first I was a bit insecure about using it after all (at the time) I could still walk. I soon got over it as I realized that it saved me some precious steps.  It is nobody else’s darn business why you have one, you owe no one an explanation. Your Dr. has prescribed it for you.

Second, if you have any difficulty with walking or balance issues, get yourself a walking stick or cane.  If you are worried about your image get a really styling one.  Having that small extra support may help to prevent a fall. Falling or tripping and falling can bring about a whole new set of injury and issues you would rather avoid if possible, believe me. Plus if you are worried about what people think at least it is a visible cue that you have a reason to have the parking permit described above (lol?).

Third, and I wish I had done this one sooner also, make use of electric motor scooters provided in big box stores. I only in the past six months have started to use these convenient scooters marked ” for the convenience of our valued customers”. My husband suggested it perhaps because he knew how tired even a brief stint in a Wal-Mart store could make me. I, of course, resisted because of vanity.  I did eventually try one though and have never looked back.  I cruise around any big box store that has scooters with ease.  I can spend more time looking around and although many items are too high to see (like the books in Costco) or to reach like my favorite toothpaste, I do find there are usually people who are fine with reaching something for me if I ask.  The big plus is the fact that I get home and have energy still.  This is energy that I can put to good use believe me! Try one…it is actually quite fun.  (In a future post I will write about funny things that can happen whilst scooting around big box stores at high speeds!)

My Gratitude Diary




It can be very annoying to be told to focus on the good and to be grateful when you are feeling like warmed over crap.  How is that for an opening sentence? I have a friend who asks me without fail how I am and so when I tell her how things are she…without fail makes some comment about “oh well at least your not as bad as ….fill in the blank here”.

While I don’t really appreciate this almost passive aggressive sentiment I will begrudgingly admit that when you count your blessings instead of your woes things really do fall into perspective.

I have mentioned in previous blog posts that I used to be a great fan of the big “O”…get your mind out of there! I mean Oprah.  She promoted ad nauseaum the concept of gratitude and of keeping a gratitude journal.  I never got around to keeping an actual journal but I do like to practise gratitude and have a virtual gratitude diary in my back pocket in which I make entries several times a day.

It goes like this…I have a pretty good Husband.  Sometimes he is grumpy but then so am I.  Alot of the time he is very, very helpful and supportive towards me and bless him he has put up with a lot of guff over the past 42 years and has let it roll off of his back. For him I am very grateful.

I have three grown children who are such great people. They are interesting, intelligent, successful at what they do. They are all in happy marriages and are terific parents to my four fabulous Granddaughters. Grateful and proud am I.

I don’t have many family members left, my Parents and eldest Brother are deceased but I still have one Brother living who shares those early family memories and I am inspired by and grateful for his passion for people, music, sports, and life.

I have two elderly Labrador Retrievers and one puppy Labrador Retriever who love me and cheer me and make me laugh.  They are my empty nest children and I admit to being crazy about them all…and so grateful to have them in my life.

I have accumulated quite a few friends over the past 59 years and have found them all to be such nice people. There is always someone to coffee or lunch with who will, no doubt, cheer me up considerably just by being light-hearted and/or laughing at my jokes (lol).

I have a pretty good house in a pretty good place in the world and feel pretty safe and secure here.  (Although I complain several times a day about climbing the stairs…why did I think a 4 level split was a good idea?).   Grateful.

Gosh I am grateful for my comfortable bed, for that first sip of coffee in the morning, for my books and my mainly unfinished knitting projects…for cozy winter evenings in front of the TV with my husband.  There are just so many things to be grateful for but I think you are getting the picture.

Life is pretty worth it.  And if you are busy counting your blessings it takes your mind off the pain, fatigue and the myriad of things that you can no longer do or that it hurts to do.

Let me leave you with this last list of things to be grateful for specifically with regard to your illnes:

Heating pads, electric blankets, hot showers, hot baths…anything that provides warmth to comfort an ache and lessen the stiffness. (Warm Socks? Something warm in a Cup?)

How about ice packs? They are so good for relieving swelling and inflammation that cause you pain.

Medications bless em…sometimes you think they are not helping much but you would be surprised if you were to go without them, (don’t do it!) how much worse you actually could feel.  And if you keep trying you may find a combination of meds that work well together and give you some relief.  I will tell you about my love/hate relationship with Prednisone some day to illustrate this point.

Rest and sleep…can never have too much of these.  A good sleep and frequent rest breaks play a big role in healing both your body and your mind.

Last one for now…be kind to and grateful towards others who help and support you in little ways.  They may not ever fully understand what you and I experience every hour of every day with RA but they get that you need some help and bless them even more if they appreciate how hard it is for you and I to ask for help.

Thanks…I am grateful that someone read this.


Warm Socks and a Cup of Comfort has a New Look and a Fresh New Outlook!

cropped-Victor-Camilo_Coffee_ZEFm.jpgWatch this site for brand new articles on better living with Rheumatoid Arthritis. Comforting words, recipes, and new ideas for coping with the chronic pain , fatigue and progressive disability. New treatments and breakthroughs as they become available as well as home remedies that help.  Can’t wait to get started…see you soon!

It is OK to talk about how you are feeling…maybe someone will hear you and give a damn.

I know that it is widely believed that we need to voice only positive thoughts, never complain and not over share our private concerns but I have always been an “in your face, straight talker” who doesn’t always follow the rules.  My RA continues to worsen and combined with the lasting effects of a recent spinal surgery, which affects my mobility and independence greatly, is it not permitted to voice my concerns about my future?  People don’t want to hear anything negative so when I commented recently about how rotten my day had turned out, I was told how great it was that it started out well. Well intentioned certainly, but not what I needed to hear.

I have most certainly not chosen this life,]. Who would choose pain, loss of function, mobility, independence over wellness, activity, independence, longevity?

It is difficult for others to understand the concept of pain that exists 24/7.  At any given time I have at least 60 inflamed, hot, tender, aching joints…and that is just my hands, feet, wrists and ankles.  This is not how I would choose to live if I had a choice.  I have lots of mobility aids to help me keep moving about but on days like today when my body is complaining it is hard to hang on to a walker, cane or even to push the wheels of my wheelchair. So what am I saying? It is not possible to always be positive. When my disease flares dark thoughts do exist like; How much longer must I endure this pain? Why me? If I live another 20 years how decrepit can I become due to the disintegration of my joints and connecting tissues?

Chronic pain does affect our moods…is it any wonder we can become irritable, depressed, angry and …not very positive?  Then there is the need to try to get those around us to understand what is going on within our bodies.  If asked how are you today I usually just say something vague like pretty good, or not so good and then try to be witty and deflect.   What I really want to do is describe exactly how I feel, which joints are involved today, which malady I am currently bothered with….only to find my loved ones glazing over thinking that I am complaining or attention seeking.  This is in part Karma as I used to feel and react the same way when my own Mom would try to explain how she felt as she aged.  I would change the subject or remind her that there is always someone worse off and dismiss her feelings as made up or exaggerated.  It is just so unfair to not be understood or to be made to feel like a head case.  The pain is real, I am suffering greatly, please understand and listen.  You don’t have to do anything for me… just please listen as  I really, really need to tell someone how it is. I would give anything to have my Mom here so I could apologise and really truly listen to her and give her some support…but what is the saying? “Too soon old, too late smart”? Exactly.

So if you are reading this and apparently I have over 2000 subscribers to my blog currently…think about what your RA affected family member needs.  Ask them how they feel and don’t be judgemental if they start reciting all the things that hurt…they need to do this, they want you to understand…there is pain, there is suffering, there is fear for the future…if it is this bad now what is down the road?  They don’t want you to do anything or even say anything but they do want to be heard and supported.


Future Uncertain after Spinal surgery…

Sad Woman in Wheelchair

Well readers, I have been away from you for awhile.Here is an update…I am home from a 2 week hospital stay for Spinal surgery.  My long journey with RA and a drug called Prednisone has led to deterioration of my vertebrae.  This is actually the second time I have had this operation, but, about a year after the last one I slipped and fell and threw it all out again.  I suffered severe nerve pain down both hips and legs and was unable to stand or walk for periods of time longer than 10 minutes.

With the last surgery I was out of the hospital in 4 days and rebounded quickly at home.  The only residual issue was a numb ankle and foot on the left side which has not improved in the 2 years since.  With this current op I began to recover pretty well…it was about 61/2 hours of surgery with General Anesthetic in a face down position so lots of body aches and groggyness.  The nerve pain was relieved almost completely though. Then on the second night my husband brought me a cup of chai tea and sat at the foot of my bed and rubbed my right leg and I thought…oh oh that leg is numb.

It is difficult, I find,  to notice numbness while you are in pain…pain takes up your attention and then as it subsides the numbness makes itself known.  The  next morning the Aid was helping me to get up to the washroom and when I went to move my right leg I realized it was so weak that i couldn’t bear weight on it.  My knee would buckle and downward I was pulled.

It seems that I have some nerve damage from the herniated disc and from the efforts to fix it, that may or may not be permanent.  While in hospital I fell onto the floor twice.  Once when the nurse was getting me up and once the night before I was to go home when my mind was on other things, I simply forgot about my weak leg and took a step on it.  Not good…screamed…fell, alarmed my room mates and hurt myself pretty badly.

I sprained my ankle badly and broke some bones in my already gibbled (my word) foot. So now that I am home my Husband and I are trying to adapt to this new limitation plus a darned sore ankle and foot.  My husband converted his man cave into a bedroom for us as we live in a (bloody) 4 level split and while i can get up and down a few stairs it is difficult and precarious.  He packed it all up and moved it downstairs and set up a pretty well-functioning but tiny bedroom. It is located on the third level so there is a bathroom with a stall shower.  Physio outfitted me with a raised toilet seat and a sturdy walker so I can make it from the bed to the toilet on my own.  I spend my day in the family room which is cozy and thanks to my wonderful daughter, is decorated for Christmas.  I can’t sit on the comfy furniture as it is to tough for me to get me up…using my arms is not great  as hands, wrists, elbows and shoulders are affected by my RA.  So I sit in my spiffy new wheelchair and try to keep myself busy knitting for my Grandkids and playing online Scrabble.  There are lots of sappy Christmas movies on cable right now also.

I am very worried about the possibility that this injured nerve system might not recover. We would really need to make some changes, as in wheelchair friendly house, vehicle and hopefully we can modify our beloved lakefront cabin up North.  I tend to be a long-range planner while my Husband excels at taking things one day at a time.  He works in a very stressful job and has his own serious health issues.  He is doing an amazing job of being my caregiver but he is only human and no terribly patient.

In the hospital I had amazing nurses…except for one…she was a natural beauty but had no warmth at all and always had a disgruntled facial expression.  However it was this young woman that gave me the piece of advice that is getting me through…

She said…” Believe that you can do it and you can power through…take it one day at a time and focus on the small improvements each day.”  Then the spell was broken and she went back to being the scowling, grumpy thing that she was. I know, I know …got to be a reason she was like that but c’mon…lol

Remember her advice though if you are not as bad off as me or even if you are in worse condition than me try to believe in your own strength and at least try to challenge yourself.  There is a lot of satisfaction to be had from doing things for yourself and others if you can do it smartly and safely.  Just believe and try.



New Doctor takes me on a Healing Journey

As mentioned in an earlier post I have run out of traditional medicine treatment options for my advanced Rheumatoid Disease. I have tried every pill, injection,infusion  and combInation of the above and have had no relief or remission of this disabling disease and debilitating severe, chronic pain.

I have not given up on the traditional route, being a nurse I know this is important but perhaps it is time to look at something else.  Through a Nursing colleague and friend I learned about Dr. who is a General Practitioner plus an advocate of  Integrative Medicine. This  is  an approach that compliments Western  Medicine with other therapies. which based on evidence, are helpful in healing and soothing conditions such as mine. It is a client centred approach where a rapport develops between Patient and Doctor and takes into account body and spirit.

My first visit with Dr M was impressive.  She is a petite 50 something, attractive woman with a warm personality.She introduced herself and gave a brief overview of her two decades of experience as a Physician and her personal experience with wellness.  She spent at least an hour and taught me about an anti-inflammatory diet which helped her personally reduce inflammation and joint pain with the side effect of weight loss. She taught me a breathing exercise to help interrupt the pain tension pain cycle.

She drew a picture of the GI system which apparently constitutes 90% of the immune system.  A healthy gut is lined thickly with bacteria which exist in harmony happily protecting us from illness.  If these good bacteria are washed away by foods we eat that are irritant then the gut begins to form and release antibodies which release into our bloodstream and cause autoimmune reactions or in other words attack our own body tissues such as joint and organs. There is evidence that this autoimmune response may be the root cause of diseases such as RA, MS and even cancer

She recommended a diet called the Dr. Andrew Weil  Anti-Inflammatory  Diet which you can see on . It is intended to give us nutrients that will help reduce inflammation and prevent or reduce illness. Dr M also recommended the book “|What Happy People Know” by Dan Baker.  She referred me to a “gifted” Massage T|herapist and recommended comfort measures such as soaking in a warm tub with equal parts of baking soda and epsom salts, using my “massaging foot soaking thing”,drinking lots of water, looking into restorative Yoga.  She sent me to the lab for a comprehensive panel of blood and urine tests and went over them with me answering questions as we went along.

A dock at sunset on White Sands Island in the Maldives.


Overall I was hugely impressed with her passion for the wellness model and have never had a Dr who spent the time and invested so much of herself in my best interests.  I left the office feeling like this was going to be a project…taking small steps and making changes to try to control the inflammation which is causing so much damage in my body. But more importantly I left the office with some hope…hope that I can find some relief from the chronic, exhaustive pain.



RA? Pity Party? You bet!

There is no cure for RA.  There are theories about causes of this disease and there are treatments which are mainly potent drugs, that are targeted at reducing inflammation by interfering with the immune system.  The goal of treatment is to produce a remission which is a period of time where the symptoms of the disease are greatly reduced.

RA  symptoms vary from day to day, even hour to hour. Pain levels can vary from pronounced in the morning to minimal in the afternoon or evening. If you don’t have RA yourself, think about the pain of a sprained ankle and then try to imagine feeling that sensation in both ankles, feet, knees, wrists and fingers. Also imagine feeling like you are coming down with the flu…fevered, achey and tired…this is a frequent feeling for those of us with RA whenever our immune systems kick in to action.

The pain and other symptoms are caused by the attack of the immune system on the structures and organs of the body.  RA can affect the kidneys, lungs, heart and other organs as well as blood vessels, joints and eyes.  On the other hand the treatment for RA can cause serious side effects like Lymphoma, Cancer, Heart Failure and more.

Not everyone gets to the stage of RA where I now exist in the non-remitting phase where the disease activity does not take a break but exists all the time with a baseline of pain that worsens on the bad days.   My body is constantly in a state of inflammation which puts me at risk for other nasty things like heart disease, stroke, diabetes and cancer.  I have tried all the current treatments and none of them has put me into remission.  I am still on Prednisone and am now experiencing alot of the side effects of  the drug…I have Cushings Syndrome, persistent hypertension, problems with my eyes and accelerated degeneration of my spine due to the erosion of bone.

Pity party?  You bet.  I am suffering and actually dread the thought of living this way for ? how many more years.  (The life expectancy of someone with RA is about ten years less than the average person.) Don’t get me wrong I want to stick around and see my grandkids grow up but decreasing quality of life and increasing dependency on others is no picnic either.

Ok so end of the pity party…all I really wanted to do is to raise the awareness of folks about this disease.  From here I plan to take my blog in a different direction.  Watch for book reviews about things like Integrative Medicine and reducing inflammation through diet, balancing the immune system to reduce symptoms and damage.  Also I am investigating meditation and visualization techniques to help cope with pain, despair and the accompanying depression.  No more pity party I promise.



Is There a Link Between RA and Celiac Disease?

There is much confusion and buzz in the western world lately regarding gluten sensitivity. Gluten is a part of the kernel of wheat which gives bread and other baked goods  airy and elastic properties.  Apparently about one person in one hundred has a sensitivity to this substance.  The western diet is very much based on bread, it is inexpensive, filling and shall we say yummy.

When someone who has this sensitivity ingests a gluten containing food, damage and subsequently inflammation occurs in the small intestine.  The small intestine is responsible for filtering out nutrients from the foods we eat and permitting needed nutrients into our bloodstream.  Another function of the small bowel is to screen out harmful bacteria and this function accounts for about 80% of our immune system.  The damaged villi in the bowel begin to leak antibodies into our blood that can in turn cause an inflammatory response which can eventually cause other physical symptoms such as irritability in the digestive system, migraines, joint pain, skin rashes and more.

My awareness of this issue came about when my daughter was diagnosed with Celiac disease.  She received counseling from a dietician on eating healthy foods that are naturally without gluten. While there are more and more “gluten-free” foods available in grocery stores these tend to be highly processed packaged goods which have limited nutritional value and are high in things like fat, salt and sugar to make them palatable as substitutes for wheat products.  When my daughter started excluding gluten from her diet she felt better right away, she lost four or five pounds from her already slender body and her migraine headaches  became less frequent and severe.

Eventually I began to wonder if I was suffering from the same disorder and started reading books and articles about this subject.  People with autoimmune diseases like RA are highly likely to have Celiac disease.  Also people with Celiac disease are highly likely to develop autoimmune disease. You might say it is a chicken and egg scenario, however, regardless of which condition was there first, both need to be attended to fairly aggressively.  The goal with both diseases is to minimize the effects of inflammation in the body tissues.

I have written before about the gluten-free diet but basically this is the first line treatment for gluten sensitivity.  It is not very difficult to follow and it does not have to be expensive either.  Gluten free foods include dairy products, fruits and vegetables, meat and other protein foods like eggs, nuts, legumes.You may eat whole grain foods as well just nothing containing wheat, barley or rye ingredients. If you must have foods that strive to be substitutes for gluten containing foods like bread, baked goods, snack items there is where you will find the expense.  My husband does the shopping for our family and he has been providing me with samples of these items complete with a descriptor.  My favorite so far is the “nine dollar f—ing corn flakes”.  They are not the original of course, but a fancy organic  look alike product.  If you are trying to lose weight it is best to avoid these products anyway because they are pretty much junk food. If you must, enjoy them as a treat now and then. I have been following a gluten-free diet for several weeks now and have lost about 5 pounds.  I have not noticed a decline in my RA but my “GI” issues thought to be related to all the meds I take have started to ease off.  It certainly does not hurt a person to eat healthy, whole foods and avoid processed ones so think about giving gluten-free eating a try to see if it helps you.


Surprising Non-Pharmacological Anti-Inflammatory Relieves RA Pain!

If you are like me with pretty severe pain every day of your life, the above title caught your eye and for an instant there was hope and then of course skepticism because for all time there have been “snake oils” out there that claim to cure your “rheumatic” symptoms. This one however is a real RA treatment that works well and is often overlooked or forgotten.

I am speaking of rest.  Tried it finally and it works! It works very well!  Now keep reading an I will explain.   Like many women I have had an extremely busy life.  Education, romance, marriage, career, children, constantly juggling tasks like laundry, cleaning, vacuuming, meals, taxi service for kids on top of work demands.  Rest? Who has time. Give me a pill to make me feel better please!

The classic treatment for most musculoskeletal inflammation is RICE…Rest, Ice, Compression, Elevation.  This has hit home this past week for me as I had another knee surgery last Monday.  The surgeon spoke to me before and after the surgery and even phoned me at home on the day after to reinforce the recommendation to stay off the knee and to use ice, tensor bandaging and elevation to bring down the inflammation and ease the pain.  My family just shrugged their shoulders because… lets just say I am usually back on my feet too soon after surgery doing “stuff”.  Maybe because this is the second surgery on this knee and I have been having big time difficulty with my mobility due to its malfunctioning or perhaps because it is pretty darn painful when I move, but I have been a very good patient and have followed my Dr.’s orders.  The side effect of all this rest is that my joint pain has settled down quite a lot.  Add to that I have been following a Gluten Free diet for about the same amount of time, I am feeling pretty good.  And it is not the pain meds talking either, I take one at bedtime and one in the afternoon instead of the “2 pills every 4 hours” on the label.  I feel so much better that if I didn’t have a bum knee I would dance…lol?

My recommendation is to try resting.  Instead of pushing yourself to do all the “stuff” that you think you need to do, make some arrangements that will let you rest for a few consecutive days.  Invest in the time to rest and heal, elevate the parts that hurt…lay down as this takes the weight off…use ice packs on the throbbing swollen joints.  Apply tensors if you like to support the worst spots.  Take your medications and supplement with a pain reliever if your Dr. recommends one.

Who would have thought? Taking care of yourself works wonders.  And it is not selfish to ask others to help you with daily tasks so you can rest and get control of your illness.  If you feel better things will be better for everyone…right?

More on the Gluten Free Diet in next post.Orange flowers


My Christmas Letter to God

Dear God:

I know I have not kept in touch with you; my life has been very busy.  I grew up, became a Nurse, married my Dave, had three wonderful children, five dogs, three children-in-law’s and two grandchildren.  I lost my Grandparents, Parents and my Brother Roy and miss them very much.  I  worked hard at several jobs which involved looking after Mothers and Babies for over three decades until I just couldn’t do the work any more.  I have faith that you have been there all these years and have continued to bless myself and my family despite being placed in the background of my attention.  I know that you get a lot of requests from people all over the Universe but please, if you have a free moment hear these words.

Lord please keep my family safe.  My loved ones are scattered across North America and this is a world of unpredictability and danger.  Watch over my sons as they go about their jobs a Police Men.  Keep them strong and give them the wisdom to deal with the peril they face everyday.  Be with my daughter on icy winter roads as she travels  in her work. Keep her well and give her energy as she works so hard.  Bless my daughter in-laws and son-in-law and give them lives filled with love and contentment in their relationships.  Help my grand-daughters to continue growing strong, intelligent and confident. Watch over them Lord.

I am content with my life having been both successful and privileged. Thank you for my warm home and prosperity. Show me how to use my life as it is now to continue helping others.  Give me the words to inspire and give understanding and support to those who are afflicted as I am.  Help me to use my creativity to bring warmth and humor to those I encounter in life.  Give me the courage to face the numerous surgeries and challenges that surely may be in my future and the will to keep fighting this painful disease.  I could use some wisdom Lord to help me find the best path to follow in living to with daily pain, fatigue and illness.   Guide those who work to find comforting treatments for disease and pain.  Help others to understand about pain that they cannot see.  Lead them to be kind and supportive to those that endure pain. Thank you for your unconditional love and acceptance and for forgiveness when I fail.  I am trying Lord but it is not an easy road to follow.

I will keep in touch God if you don’t mind as you are a source of strength and light.

Yours faithfully,