The Whole Blog in a Wordle

The idea of doing a wordle and having the whole blog encapsulated in one image was exciting. 

It's something I have never done and since this is a week of new things here's my wordle.  You can read the whole blog in one easy picture.

It's an inspiration from the #HAWMC blog challenge.  Looking in from outside the participants seem to be having a lot of fun.

Progression of Damage and Why It matters

Damage to your joints sounds so academic and unlikely when you first get a diagnosis of inflammatory arthritis (or Rheumatoid Arthritis Disease). Even though joints are painful and swollen it's hard to believe that your bones will be affected.  I developed RA at 32 and took having good health for granted then.  There was no time to be sick with two boys 10 and 11 and a job.

                                       Anetto archive

You start off as normal healthy person and Rheumatoid Arthritis comes sneaking up on you gradually in most cases.  You start to notice pain and fatigue.  Your joints hurt and you feel so awful, and yet you still wonder  if you're sick or is it just life catching up with you? But now the effects are hitting you like a ton of bricks. My doctor thought I was dramatizing and hysterical so the process of finding the problem took longer.

                                www.cropthornehouse.co.uk

But finally you have a diagnosis and start on methotrexate, the "gold standard" drug. You have to wait to feel the effects and they creep up on the RAD just like it crept up on you.  Finally you start to feel the drug is working. The pain and fatigue ease up and you can function better bit by bit, even though nausea and gastro effects may make you feel like crap. (And this is a good result) 

(note: injecting MTX is easier on the stomach than pills)

And you are happy that your joints are not swollen and there is less pain and fatigue.  Your normal/old life is hard to remember but you feel better and that's some relief.  However from my reading and the evidence of my own joints after years on MTX, damage to your joints may still be occurring. 

If you were to look at X Rays it is easy to see the difference between a normal joint and one seriously affected by RAD

                                     www.paincaredirect.com

Normal joints have space between them and you can see 8 separate bones in the healthy wrist.

I was shocked to find out after years with RA and MTX and assorted other Dmards that MTX does not stop damage to bones from occurring.  Your symptoms may improve with that treatment but it is no guarantee that your bones are not being eroded and that your joint space is not narrowing.

For years I thought that I was on the best treatment and did not think I needed a biologic drug.  That was before I saw information about new clinical trials and read that with a biologic there is a lot less joint destruction.

As an example the Premier Trial concluded that   "ADA+MTX (adalimumab + methotrexate) inhibited both JE (joint erosions) and JSN (joint space narrowing) progression independently of disease activity. JSN played a more prominent role in patient-reported outcomes than JE. Preventing the onset or worsening of JSN probably represents a critical aspect of effective disease management of early rheumatoid arthritis patients"

And here "Early intervention with combination therapy also offered substantial protection from radiographic damage compared with methotrexate monotherapy." 

                                  MTX Right/Folic acid Left

Dr Haraoui says this in an editorial from Annals of the Rheumatic Diseases
"Indeed regardless of the therapy used, approximately 50% of patients will not show radiographic progression over 2–3 years; This percentage increases up to 75–85% of patients receiving combination therapy, and those who do progress, progress less than patients on methotrexate alone."

There are many reasons that I have a lot of damage to my joints. Some is due to late diagnosis of course, but 20 years on MTX, even with other associated Dmards, was not enough to stop the joint damage.  By the time I had a wrist fusion the Dr could not distinguish the eight separate  bones and said there was no cartilage at all in the joint.

When you end up with this much damage there are many things that are difficult or painful for you to do and some things are just not possible anymore. Damage leads to disability. "The association between joint damage and disability in rheumatoid arthritis (RA), especially in the later stages of disease, is a main reason why radiographic joint damage is a common and valid outcome measure in RA clinical trials"

                             Structural Damage www.ehow.com

Here is one of the main goals of rheumatology treatment:
"The primary goal of treating the patient with rheumatoid arthritis is to maximise long-term health-related quality of life through control of symptoms, prevention of structural damage, normalisation of function and social participation." 

The treatment is now much better and the levels of damage to joints have decreased over each decade. The level of disability is decreasing over time with good treatment.  That's the good news

RA and the Bone Surprise - Osteoporosis

When I was diagnosed with RA I knew that it was possible to have destruction and damage to my joints.  And I could tell by looking at my hands and my feet, and by the way that they felt, exactly where the damage was likely to be.

                                                                      BrookburnPrimary.net

But the problems are always in what you don't know and so don't ask.

This is what I did not know: While my joints were being damaged I was also losing bone mass. "This loss of bone mineral density in rheumatoid arthritis occurs early in the disease and this is the time to start treating for osteoporosis risk by preventing bone loss".


So the RA treatment I was getting was aimed at putting out the house fire (inflammation) while there were termites in the beams (loss of bone mass).

That's my rheumatologist there in the front seat of the fire truck concentrating on putting out the house fire(inflammation).  None of my 3 rheumatologists ever mentioned osteoporosis as something to worry about.  I had 20 years of treatment with  never a word (that sunk in) about the dangers of osteoporosis,thinning bones and fragility fractures.

Once I found out that my inactivity and inflammation had actually made my bones hit the red line for osteoporosis my first reaction was anger.  Then I kicked myself for not using common sense and figuring this out.  Next I got a referral to the Osteoporosis Clinic at Women's College Hospital in Toronto.  They have an excellent multidisciplinary program where patients meet with a doctor, physiotherapist, dietician, pharmacist and an occupational therapist.  Armed with all of that information I was ready to be a late starter and work on my bones.

I started with simple muscle tightening which I describe in my blog post here.

Now I do a modified form of Pilates. It is customized to accommodate damage to my hands and feet and a fragile spine.  With osteoporosis you should avoid flexion (bending forward) as much as possible and do a lot of extension exercises.

I do it at home because I am afraid that I will be the Tin Man in the gym.  Exercising in a group may be more fun and if any readers in Toronto want to get together for Pilates they could join me, but the big plus to exercising at home is that all of the time you have available is used for exercise, not in getting from one place to another, including parking and changing.

Here is a link to my favorite osteoporosis site by Dr Susan Ott. You can calculate your own fracture risk using the calculator on the site. http://courses.washington.edu/bonephys/  She does a great job in keeping it updated and ad-free.

The next post will deal with what to do to improve your risks and why exercise is helpful. 

Coping Strategy With Surprising Results

I mentioned in the last post that I had found a coping mechanism that suited me very well and helped me to regain my optimism.  Entering contests provided intermittent gratification which is the most compelling type there is.  It's the same impulse that makes you check your email every five minutes to see if something new has arrived. 

It helps to find something that gives you a feeling of accomplishment when you have to change your life plans.

So I actually stumbled upon a method that gave me some distraction from the fatigue and tedium of RA.  This is the story of one of our most memorable early experiences with the hobby the first summer after diagnosis. It proved to be life changing.

                                                Many types of pastimes can work

At my urging my son entered a newspaper contest to win tickets to attend the Shrine Circus.  There were some additional prizes of bikes and a trip to be awarded at the show.  At this time in our life my husband was totally engrossed in writing his first computer program as a self employed person and was so totally absorbed that he was almost living on another planet from the rest of us.

My son won one of the 25 family tickets to the Big Show.

On the day of the circus we arrived a little late and rushed to our seats in the bleachers.  We sat down and before we knew it the ringmaster announced a winner of a bicycle.  My husband clapped and cheered - he did not know there was a draw at all but he likes to be encouraging.  When the next bike was awarded he kept on clapping.  Then we got to the trip draw.  The ringmaster said "And now we draw for the winner of the grand prize - a trip to Disney World.  And the winner is ...my older son said his brother's name - and the ringmaster said the same name immediately after.

They called my son down to the circus ring and he disappeared.  Next thing we knew he came out riding on the lead elephant in the opening parade.  My husband was flabbergasted.  He had no idea what was going on - in moments like that it is hard to make out the words of an announcer.

                                                    

When my son finally rejoined us he had another unexpected development. He was wearing shorts and had developed big red welts on the inside of his legs.  It turns out that he is allergic to elephants, not just horses and cats. Still it took a long time before he stopped grinning with delight.  

Luckily the rash cleared up before we went to Disney World.

Ideas to Spare Your Hand Joints - You'll Need Them For a Long Time

Here are a few things I use to save the joints of my hands and fingers.    I also have a collection of things that might help some day and others items that are useless and rather silly.

I collect water bottles that are easy to hold and easy to pick up without looking while I am driving. This was one of my best finds though ecologically bad. Here I am in Canada and we are shipping this water in from Ireland. It amazes me that any company would find that economically feasible. But it's good for me - all of those indentations give me a good grip. And also I am far less likely to drop it. Now if only the lids didn't keep rolling under the car seats...

I have actually worn one of these out since I first got diagnosed. I almost feel that I can open anything with it. For pop bottles, pickles (lie -I never open pickles) fruit juice and everything else I use this as an opener. This jar opener even works to pry up the vacuum sealed lids on mason jars of soup.

This is just a plastic sleeve that I have heard called a nobby.  It makes setting the dryer a lot easier.
Sometimes you don't realize how much strain you are putting on your joints until you make it easier.  These can be used on any knob or dial.  They are a little stretchy but you might need help to put them on the knob the first time.

Turning keys in a regular lock can be tough when your hands are sore and weak. Opening my front door has always been a problem for me.  I used to use the metal split ring on my keyring but it is MUCH easier using this keyturner.  I even bought another to use for the washroom door at my office.

If you would like to see more tips Auntie Stress has been posting 1 per day for the last 355 days.  What a lot of work that has been Marianna!  http://rheumfuloftips.wordpress.com/

Strength and Power with RA

It's been 30 years since I was diagnosed with RA.  The onset was classic in its symptoms but my GP at the time thought all I needed was aspirin.  He said take 12 a day and come back in 3-4 months.  I thought the weight loss that was occurring was due to switching from Pepsi to Diet Coke, and the sore feet were from standing at work.

The result after diagnosis was a long battle with illness and no exercise.  How could anyone expect me to be active?  It was all I could do to keep going. 

I saw a physiotherapist from The Arthritis Society sometimes and she recommended one exercise that stuck with me.  That is the exercise where you act as though someone is trying to stick a knife in your bellybutton.  You draw it in your muscles and tense them while you hold them tight for as long as possible and if you can, try to pull the muscles up toward your chin. 

Well anyone can do that lying in bed so I did it for a few months regularly.  Sometime later I was enrolled in a clinical trial which required frequent visits and doctor exams.  One day I was examined by a new rheumatologist.  In feeling my abs she said I had good muscle tone!!

That was a turning point - it amazed me that so little work could have such an appreciable effect.  The trial did not work out - but I was enthusiastic about exercise all of a sudden and started to work on Pilates in a modified form called Arthro-Pilates which is taught by a Lori Weisbrod. She has inflammatory arthritis herself. Her site is http://www.arthro-pilates.com/  It felt a lot safer to be taking lessons from a person who knew my limitations and is an amazing example.

Lori Weisbrod

Now I have more muscle and strength and maybe I could go farther. After all if a 95 year old can be a yoga master and if someone who starts at age 56 can become a sculpted bodybuilder in her 70s I am sure I can develop more strength and power too - I'm not even a senior yet.