Change: Not the Kind You Need

More verbatim stories from the Support Group...

It's been a long time since I put my change into a wallet. Now I just drop all the change straight into my purse - If I need some I shake the purse and scoop some up. It's too heavy to carry around so I follow Julie's example:

"I take any change out of my purse and put it in a container on my dresser.  When I have a bunch of coins, I give all of them to John and he either rolls it, uses it or takes it to the bank.  I don't usually pay for much of anything."  

Polly has a tougher time.

"My hands are claw-like now except for the thumb and the forefinger. I keep forgetting I don’t have use of those fingers like I used to so I am always dropping things.

Today I was standing in line and 5 cards from my credit card pouch fell to the floor......the lady behind me picked them up.  Then another one dropped and she picked that one up for me.  Thank you!  GOOD GRIEF!  I have to remember that only my thumb and forefinger are viable.  The rest are just taking up space.

Hard to type when your hand is not straight

Julie has another issue:

"You were talking about hands and fingers.  The other day, I needed to copy a bunch of papers and went to my main big printer and it would not work!  It said there was a paper jam that we could not find. I was also trying to use the automatic feed and the paper got caught in there. I finally got it working, but black streaks were on everything and the paper came out wrinkled.

Meanwhile, I thought that I would just use the other wireless printer.  Turned it on and it was out-of-ink!  Sent John to the office supply and he brought home 5 new cartridges (that is what the wireless printer takes).  I decided that I would change the cartridges while John was gone - big mistake!  Each cartridge was completely sealed in plastic and I had a devil of a time getting the plastic off.  Then an orange plastic thing has to be turned to be taken off before installation.  By this time, I could barely move my hands/fingers.  Then, I could not get the old cartridges out as it has to be done with the bad fingers. Finally, after an hour, I was able to complete the task, but could hardly use my fingers.

I went back to the main printer and found where the black streaks were coming from and cleaned them off.  Then, still - each copied paper came out wrinkled at the top of the page.  I almost took the printer apart looking for a reason but finally just threw all of the paper in the paper tray away and put in a new load of paper.  I finally got it working without streaks or wrinkles.  My fingers/hands still have not recovered. It is such a nuisance to have such bad hands and fingers"

Polly commiserates:

Isn't it frustrating to have to jump thru hoops to get things that should be so easy?"

I know what you mean about those cartridges and then to get them out of the plastic casing.  Good gravy!!    Wow, five cartridges...that’s frustrating to fight with that.  I would be sweating after 10 mins.  It is awful to have such bad hands. Are they still sore?  What an ordeal for you.....

I need to buy a wrist brace. I wonder if I could get it on  myself?  If I can't work with the fingers I have I wonder if the brace would make it worse...more bulky. 

I don’t need more stuff to impede my 52 pick up fingers. Even just getting things on the conveyor belt is an obstacle for me. I kind of fling the items up there."

And Julie provides people with a distraction:

I wear my wrist brace a lot and people don't look at my hands/fingers much - they are looking at my wrist brace and then I tell them that I have arthritis.  Then, they start showing me osteoarthritis in their fingers and saying how much their thumb hurts - turns the attention away from me.

Taking RA On The Road

Sometimes it seems chronic disease takes more care and maintenance than a delicate exotic animal. Going away from home needs careful planning and a lot of lead time. Travelling alone would be even more challenging than going with a partner. Some illnesses may be a largely invisible but the items needed for support and success caring for them are only too visible and overall they're heavy.

Here are some  examples of what helps make travelling easier for me.

The drugstore that I use made a set of small labelled vials for prescription drugs marked "For Travel". That helps reduce the volume of pill containers. 

For vitamins I used a muffin tin and saran wrap that sticks to itself to make little "pill hills".

I worry  about taking hard to replace custom-made splints even as carry-on luggage so I am using older ones that take up less space and are not so fragile. Breakage or loss wouldn't be as critical.

Long ago I got tired of pulling out tubes and containers of creams and moisturizers so I now put them in these sample size jars. It saves a lot of wear and tear on my hands and it takes weeks between fillings.

Finally the flip phone has been replaced. The iPhone seemed so slippery and small when I started using it. Even a sensible shell case was not quite the answer. The one below is perfect. It's soft plastic, has nice curves and the beak makes a great backstop. 

iPhone in case

For my one "personal item" allowed in addition to my carry-on on for the flight I chose a backpack. It's roomy and easy to handle. That makes it great for hands-free shopping and carrying a computer, cables and rechargers.

On the trip I took my Tranquil Eyes in case it was too drafty or bright during the flight. Using them can help dry eyes with Sjogren's Syndrome.

So far the thing I miss the most while travelling is constant access to the internet. It's so hard to go back to former practices like "remembering".

Another plus on the last trip was a new suitcase with 360 wheels. When the floor is smooth it's a bit like walking a dog. So easy to push, even though it is still heavy. Now that I'm so ready to go it's Saskatoon here I come!

The Rheumatologists' Secret Weapon

I am an enthusiastic supporter of the profession of Occupational Therapy (OT).  The services they provide patients to help us develop coping strategies and to aid in the empowerment we need to manage our own health problems is impressive.  They are the secret weapon used by many rheumatologists; if your doctor does not recommend that you see an OT, double check with him or her. If the doctor feels it is uneccessary you can find them on your own or possibly through The Arthritis Society in Canada.

When I was first diagnosed with RA thirty years ago I met an OT at the hospital and learned the Principles of Joint Protection.  One of the most important 'rules' is that you always use a larger stronger joint to perform an activity when possible.  So it is better to push yourself up from  chair using your forearms rather than your hands or fingers. You need to preserve the small easily damaged joints.

                                       www.arcinteriors.com

Often the first thing people think of with OT and inflammatory arthritis are the items that can be used to help with daily activities. There are household items like key turners and kitchen items. My favourite of all time is the right angled knife. 

It makes cutting so much easier on my hand and wrists. I also preserve my finger joints when I write by using pens with a large barrel or made larger as you see in this picture:  

There are so many ways that an occupational therapist can help you to carry on with doing the things that are important to your life and your job.  They usually start with an assessment and make a treatment plan for you - perhaps including special exercises, or modifications of the ways you do things.

Here's an example of a life-changing OT experience from my friend Julia who was suffering every time she had to use her washroom.  Her knees were causing so much pain that it would sometimes take her 30 minutes to get off of the toilet and carry on with her activities.  One visit from an OT and a raised toilet seat solved her biggest problem. She actually says "Now I love my toilet!"  How many people have you ever heard say that?

                                      www.ojmedical.com

So my advice would be that if certain activities are becoming difficult or if you are having a lot of pain in a specific area you should get a referral to consult an occupational therapist.  They can help with any joints but especially if your hands or wrists are affected by Rheumatoid or Osteoarthritis.

Below are two signs that there may be an OT in the vicinity.

The electric frying pan and the heat gun may be specific to rheumatology OT's but I am willing to bet you'll go a long way before you find an OT who sees patients and has no wheelie bag.

There are many types of splints and supports that an OT can make, or help you to find for your hands and fingers.  Here are pictures of two types that have helped me.

                      Resting splints can help with wrist pain and maintain good hand and finger positioning.

Silver ring splints can keep your fingers in a more functional position.

You can also have your work area assessed to see if you are working ergonomically.  

I am concentrating here on only one area where OTs can specialize. They also play a large role in helping anyone learn better ways to live and deal with a large range of problems from autism to stroke to mental health. 

There is more information about splints in this post. from the past. I'd like to take this chance to thank the OTs who have helped me through the years.  

More Reading
From the American College of Rheumatology about OTs

Rheumatoid Arthritis and Intimacy

In chronic disease when you think of intimacy or sex  there is always the question - Is it me or is it my health?  I never thought it was the rheumatoid arthritis, but with all of that pain and fatigue having a sex life was the last thing on my mind when I first became ill.  It used to be so painful when any part of me was bumped by accident that I would build a little barrier between me and my husband to protect my hands and feet. That is the most unromantic thing I expect I'll ever say in public.

As the years have passed I have resorted to all kinds of methods to wake up in the morning in better shape.  This now includes resting splints on my hands, another splint to keep one foot from moving in a painful way at night and a neck support collar which has helped with neck and shoulder pain.  But the upshot is not too pretty.  Add that to a strong desire for comfort and enjoying a duvet as my only cover because of the weight and awkwardness of covers and I am sure I seem antisocial as well as unromantic. I certainly don't look cool and beautiful in my own mind.

Depression is also an issue for some at any point in the road you take with chronic illness. That also puts a damper on things

Lately I found a study on PubMed.  This one is called "Evaluation of Sexual Dysfunction in Women With Rheumatoid Arthritis: A Controlled Study".   Sorry RA Guy and other men - I am sure this problem is not confined to women with RA but the authors did not study you.   Here's the link and another about Sexual Function in Women With Chronic Illness and Cancer

Are you surprised to hear that active RA has a measurable effect on your sexual function? I guess the answer is to get healthy overall to counteract this gap that can develop in our lives but there are not many solid ideas out there to help in this area. Maybe it seems to be a lesser issue with all the health worries that come with chronic disease. 

At the Sjogren's Conference this year there will be a speaker who will address this topic at the request of the members. It's a vital area in our lives but there is a real lack of advice.

When we're over 64 we'll still be together

The song below always makes me laugh because I can identify with it, with all of my occupational therapy help in the night.

Here's a song for all of the people out there sleeping with OT aids and CPAPs, along with their partners.


After the ball was over
Katie took out her glass eye
Took out her teeth to wash them
Hung up her hair to dry
Threw her peg leg in the corner
Hung her wax ear on the wall
You'd never recognize Katie 
After the ball.