In the news this week!

I read a couple articles this week ticked me off. 

The first one was an article claiming most RA patients die 10 years earlier of premature heart disease.  When I was first diagnosed and researched RA, way back in 1984, it was believed our life expectancy was shortened by 5 years.  So what happened?  Where has the extra 5 years gone?

Personally, I don’t believe this but if it is true, it might be a blessing in disguise.  I’m 50 years old this year and with the progression of this disease I’m not so sure I want to be here at 70 or 75. I’m not trying to be negative or depressing. But with all the help I need now to get through the day, I can only imagine what I will be like at that age. I would have to be put into a home because I doubt my husband (who’s health also isn’t good) could look after me at that stage and I don’t want to live in a senior’s home.

This article states, "The majority of the delay is on the part of the patient." Apparently we wait too long to go to the doctor for a diagnosis because we think it is the normal aches and pains of growing older. Most with RA first notice symptoms in our mid 20’s to mid 30’s. We do not think the pain we are suffering with is because we are getting older. From what I read on our blogs a lot of those with RA have a problem with their doctors not taking them seriously or we can’t be given the new medication which is showing success because our medical system insists we start at the bottom and work our way up to the more effective ones or they are simply too expensive without an extended medical plan.

I do agree with both articles that state the sooner we are diagnosed and given aggressive treatment the better. We feel rather invincible in our mid 20’s. but it needs to made very clear that we need to eat a healthy diet, do low impact exercises every day (the bad days do only Range of Motion), see an occupational therapist to find out what we should do differently to protect our joints and trust our instincts when it comes to our medical treatment. If we don’t feel we are receiving the right effective treatment we should talk to our doctor and if he won’t listen, find another one who will!

Life is too short not to look after ourselves properly and according to research it is getting shorter. Oh, and don’t believe everything you read.

What advice would you give to a someone newly diagnosed with RA?

I was diagnosed at 23, 27 years ago this month.  I so wish I had listened to the advice I was give back then. Would it have changed how I am know? I strongly believe it would have. So to you out there who have been newly diagnosed, here is my advice:

1. Daily do your Range of Motion  and low impact exercises. This is the most important! Your physiotherapist will give you instructions on how to do the Range of Motion exercises that you can later do at home.
2. Go to an occupational therapist and get hand resting splints and use them every night. You could alternate one hand one night and the other hand the second night to make things a little easier.
3. Eat healthy - some will suggest no nightshade vegetables, cutting back on red meat, becoming a vegetarian - what ever works for you to lessen the swelling and the pain.
4. Connect with others with RA - no one truly understands what we are going through unless they too have RA.  They can empathize, tell you what worked for them, and let you know you are not alone.
5. Rejoice on the good days, don't take them for granted!
6. If after 3-6 months your medication isn't working go back to your rheumatologist and let them know.  Ask to try something else. I don't know if it is the same in the US but in Canada you have to go through all the medication steps before the government approve a new medication such as Embrel or Humira.
7. Do not take predisone for a long period of time! I was on it for several years as it was the only thing at that time that worked. But with long term use it is causes your joints to weaken and deteriorate. It is great for short term though, especially for a major flair up.

Well that's my advice for now!  Now it's your turn - what advice would you give?