Babying My Feet/Baby Steps

You start off as a baby with perfect little feet and take it for granted that they will be there for you all of your life.

NewBabyNewLife.com

But illness, badly fitting shoes or accidents can make walking difficult for you.  Since my feet have been affected by RA I often find myself sitting and watching people walk by.  It is surprising  how many times you see others with problems.

Today I read a study about a foot evaluation questionnaire called SAFE-Q.  The evaluation form itself is in Appendix 1 of the paper.  If you look at it thinking about your own feet you get a very comprehensive view of the problem areas.

This week I was a volunteer patient for a class of physiotherapists and one of the questions asked concerned the ways which my life had been affected by having chronic illness.   I had to say that I had lived with it for so long that I could not really imagine a different life.  The teacher told the class that this was a common response, and one way to illuminate this issue is to ask the patient this question.  "What do people your age do that you can't"?

That's an easy question to answer.  My peers without health problems walk a lot, garden and have more extensive real life social networks.  That's the reason that the foot assessment questionnaire made such an impression.  It itemized all of the different parts of life that are restricted by foot problems.  

                                  Back2Feet.com owns this foot

I think what has bothered me most is being unable to participate "normally" at parties, get togethers and business meetings. When your feet hurt you are the one sitting in the corner or next to the food. Between that and having to wear "sensible shoes" you have a world of social awkwardness.

My friend Julie says this:

"The part of my body that I notice changes day-to-day are my feet.  One day, they are fairly good, the next day - swollen, burning and more painful.  It might have to do with what I did the day before.  We always pay for our over-doing don't we?"

I agree with Julie. The burning feet in particular are hard to work around.  

Rheumatoid disease is notorious for the way it affects the feet.  There are all kinds of strategies to make them comfortable - extra padding, special shoes, wrapping up my toes.  None of them worked perfectly though orthotics have helped me the most  day to day.  The other option which can be used is surgery which can wait for another day. 

                                     This orthotics doesn't fit

                                                           Globalanimal.org

His orthotic fits

Grocery Shopping with RA-Keep Calm and Carry On

Many things in my life have been changed by rheumatoid disease. Food shopping  is not the experience it was.  I used to walk around the whole store almost daily and thought it was fun.  I even shopped with coupons coordinated to the shopping list and a sharp eye out for contests.  
Now my wish is to get in to the store with a minimum of fuss when it is not busy with crowds of shoppers.  I move too slowly for people in a hurry and sometimes they hit the back of my heels with their carts.  

The carts are bigger than in the past and hard to manoeuvre with sore hands and wrists.  Last time I was at a store on my own I couldn't pull a cart away from the end of the line which was jammed too tightly together.  Now when I get a cart with a wonky wheel I abandon it quickly.  It's a complication not worth dealing with.

Lately I found a new store that has great fresh reasonably priced food in the salad area. For $22 yesterday I got enough food for 2 dinner main dishes and lunch and snack food for almost a week.  All healthy work-savers and chopper-stoppers.  The same place has a whole wall of prepared and/or chopped food so the only barrier is money.  It's like shopping Nirvana for bad hands.  Sometimes I even manage to shop only one aisle.

                                    Salmon           Shrimp Salad

Our new method of cooking involves making large quantities, eating the same thing for a few days and also freezing half when we make it.  The days we don't have to "really" cook are great.  

And it seemed like such a coincidence that I saw friends on Twitter talking about freezing food on the day I wrote this post, although at 4x the recipe quantity they are far ahead of me.

                                        Mega Lasagna

Here's a tweet that demonstrates just how happy we can be with frozen resources:

RAW‏@RAW4RA27 Mar If I take spaghetti sauce out of the freezer for dinner, I can get by one more day w/o grocery shopping. Once again, #YAY for freezer meals!

That sentiment inspires me!

We used to grow our own vegetables. I wistfully remember the garden plot where the kids and I worked together.  Now it's a memory because of the work involved.  We used to grow so many tomatoes, and zucchini that we shared with our neighbours. 

 Just mentioning tomatoes reminds me of my grandson. That's really him in the picture, not a doll.

The concept of turning over a new leaf is not an theory anymore.  It's a new reality for many whose lives have been altered forever by a diagnosis.  Of course that is not the only life changing event that can occur. Most are more desirable and some are a lot worse.

So I will embrace my pre-chopped, frozen and pre-made food while I shop in the off hours and try to eat healthy and look on the sunny side.

                                             Sun by Reem

Trapped in a Sports Bra

There are certain things you have to adapt to when you have sore and swollen or damaged hands. It's obvious that your days of carrying all your heavy groceries at once will end.  But are there other problems?

I decided one day that the perfect comfortable item that I needed to have was a sports bra.  I could just see myself getting into great shape and looking cool and sporty.  So after consultation I picked out a few and headed to the change room at Lululemon.  

                                                Nice sportsbra from Lululemon

It was very disappointing to find out that reality did not match my imagination.  I managed to get it on with difficulty but the problems really started when I tried to take it off! I ended up with it half off and was unable to get any further.  Panic stations! I was totally stuck in the middle of removing it. The thought of calling for help in that state was humiliating. No one sees that much of me. And there was no way the situation could have been less flattering. Well, I relaxed,took deep breaths and obviously managed to leave the store but not without a severely bruised ego.

Thank goodness yoga pants are so easy to wear.  At least I can go into a sportswear store and find something.

There have been more close calls with humiliation. Once I went to a meeting at our community center and had a lengthy delay while I struggled to get out of the stall in the washroom. The place was almost empty and I had no cell phone then but would I really want to call 911 or someone at home to come and rescue me?

Luckily there are many ways to adapt beyond brute force. (Now there is something I don't do). I have exacto knives in most rooms of the house.  How do you cook without one?  

This is a super convenient food if you can only open the freezer bag inside and also the *%darned zip lock freezer bag inside. I have been known to slice the zipper part of the bag right off after I throw the chicken on the floor.

Once at a conference one of the attendees had brought some Boost and none of us were able to open it.  It took a waiter and kitchen tools. They have since revised the closure. But this is a product made for people who are frail and weak.  Massive fail.

I'll end with humour to cleanse the palate after those confidence shaking stories.
.
This "funniest voice mail I have ever heard" always makes me laugh even after so many years. and laughter is a great antidote.  

Hints on Injecting biologics

Here's a piece of advice about injecting biologic drugs I got from an online friend many years ago.  I saved it and have passed it on before this. I am sorry I can't give credit to the author.

She said:

"Here is what works for me.

First thing give yourself time, this isn't a facial, but it is something you are doing for you. Treat it like a gift. fix a cup of coffee, go someplace quiet, play calming music.

Make sure the syringe is WARM. your body is 98.6... room temp will be a shock. I leave my Humira sitting out for 30 minutes as suggested. Then just before I inject I roll it between my palms.

Ice the area of your tummy you will inject. Get it REALLY cold. I have an ice pack in a light tshirt, and leave it there for a good long time. You want that area numb. Wipe your tummy with the alcohol pad and let it dry.. Completely.

Pinch up a roll of flab about the size of your thumb and finger together, check the syringe, and gently push the plunger in a little to get the air out of the syringe..

Hold the syringe like you are throwing a dart, and slide the point into the skin you have pinched up. The ice will have numbed it so much you won't feel the needle slide in.

                                                chronicle.augusta.com

Release the flab, and shift your fingers on the needle holding it between the index and middle finger, with the thumb on the plunger.

SLOWLY depress the plunger..I depress to a chant..."My toes won't hurt, my ankles won't hurt, my knees won't hurt, my hips won't hurt, my fingers won't hurt, my wrists won't hurt, my thumbs won't hurt, my elbows won't hurt, my shoulders won't hurt, my jaw won't hurt...this shot stings but far less than my body hurts."

You should be finished then, remove the syringe, place the ice pack back on for maybe 30 seconds, and dispose of the needle...now finish your coffee.

You can do it"

I love the way she put this and really appreciated the time she took to support others.

Fatigue and RA

Before I was diagnosed and treated for Rheumatoid Arthritis I had so much fatigue that I would come home from my part time job, lie down on the bed fully dressed and stay that way till morning.  I was so tired I could not even get up to eat dinner, much less make it.  That was when my fatigue was at its relentless worst.

                                      

After treatment started and I began to feel less fatigue it was still hard to keep ahead of it.  My strategy was to spend one day a week in bed resting to recover my strength to get through the other six days.

As I adapted I changed my job and my life, my hobbies and my socializing.

                                Stuck in a groove.  JapanPrint

Finally I settled into a groove - a livable one but not the ideal.  I had enough energy to work full time.  This was an accomplishment I was proud of but I had to go right home after work. Shopping stops or doing errands took too much energy so I did the least possible on weekday evenings.  Weekends were for resting and possibly groceries and visiting elderly relatives.

When I got home from work I would often lie down so I could get through the evening.  The image in my mind as I lay there without energy to even listen to music was of a doll lying in a dollhouse waiting for life to happen. It was profoundly unsatisfying.

                                    warmhotchocolate.com

It takes energy to think and to plan ahead.  If you don't have that you don't make the right choices, or any choices.  I did start to exercise on the advice of my helpful physiotherapist and found that I could do muscle tightening exercise with no ill effects. But when I did the clamshell exercise with a Theraband 5 to 10 times I found that my hips felt like spaghetti for 2 full days afterwords and made me weaker.  

                                   ca.shine.yahoo.com

It was at this point that I noticed in my reading the claims that biologic drugs improve the quality of life and sense of well being in RA. Because of this statement I worked on convincing my rheumatologist to prescribe a biologic for me.  

Of course this was not the only reason I wanted to add a biologic.  I wrote here about how shocked I was to find that joint damage still continued with methotrexate, even when other symptoms decreased, and I couldn't and still can't afford to have any more damage.

After four years on the biologic drug Humira I now have enough energy to exercise and not be exhausted for the two days following. It also means I can do errands even after working all day.  Small gains in a sense but they matter a lot.

                                                        scienceDirect.com

Here's an interesting look at the way inflammation and prolonged response to it can affect the body. In Consequences of the Inflamed Brain Dr Maier and Dr Watkins say "mechanisms that evolved to handle acute emergencies lead to outcomes that nature did not intend if they are engaged too long ... 
outcomes may become established, leading to cognitive impairment instead of brief memory disruption, depression instead of reduced mood, fatigue instead of inactivity, and chronic pain instead of acute pain. That is, physiology can become pathology when a set of processes designed to be relatively brief becomes prolonged."  go on to conclude that inflammatory events can lead to this process which includes fatigue.

I also believe that pain takes a lot of energy to deal with.

                                         stsiweb.org

Fatigue can be affected by our mindset and we can improve it somewhat by cognitive therapy but I strongly believe there is a large physical connection between RA and fatigue.  Having a positive mindset did not affect my ability to exercise and be more active. Taking a more effective drug combination helped my fatigue both now and at the onset.

I believe that other factors have a part to play but that the fatigue is caused by RA and that changing my attitude will only work if I am receiving the best treatment for the physical disease.