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?

Black vs Green – Tea that is!

Earlier this month I read an article over at HealthCentral.com regarding a U.S. study from Georgetown University that stated drinking black tea increased the risk of RA in post-menopausal women. Apparently women between the ages of 50 and 79 who drink black tea increase their risk of developing RA by 40%. Women who drink more than 4 cups a day increased their risk by a whopping 78%.

My first thought with was, RA strikes most of us long before we reach the post-menopausal stage, often in our mid to late 20’s; so just how important is this study to the onset of RA? But for those of you do not have RA and have reached the post-menopausal age you may want to cut out or cut back your black tea consumption or at least investigate this claim a bit further.

I searched the net to see if I could find any information on the effects these teas had on RA patients.

This is what I found.

Black Tea

• Contains an anti-oxidant called quercelin which fights inflammation and helps with a healthy immune function.
• Reduces the risk of stroke and heart attacks.
• Reduces the production of LDL – bad cholesterol
• Has less caffeine than coffee
• Slows the absorption of blood sugar

While I was researching for this post I came across this unique Libre Tea Glass – for those who like to enjoy their loose tea on the go!

Green Tea

There is almost nothing but positive information about green tea.

•  Has antioxidant called EGCG (Epigallocatechin gallate) may decrease inflammation by blocking the chemical chain reaction and help prevent joint damage in RA
• Has less caffeine than coffee and black tea
• Contains amino acid L-theanine which helps to relieve stress
•  Helps avoid tooth decay and helps create healthy gums
• Reduces the risk of stroke and heart attacks
•  Helps prevent cognitive damage
• Promotes weight loss
• Increases energy levels
•  Helps promote a healthy bowel function (I did find one site where someone became constipated after increasing her use)

Tea Plantation

It’s interesting that both teas claim different health benefits (mostly). I love my cups of tea, usually black, but after looking at all these results I plan to switch some of those cups to green tea. I want the best of both worlds.

I also recently read about drinking 1 cup of red wine a day reducing the onset of RA by 50%.  I wish I’d known that in my early 20’s, lol. I will say, on a personal note, one glass of wine or alcoholic beverage does reduce my stress level and takes the edge off my pain.

Please note:

1) Alcohol abuse is linked to liver cirrhosis, cardiovascular disease, fetal abnormalities, various cancers, chronic inflammation, etc. and increases the risks of hemorrhagic strokes due to its anti-clotting effects.

2) Caution must always be taken when mixing alcohol with any prescription medications.

Friends & RA

How many good friends do you have? Besides family, I have very few close friends. I do have a fair amount of acquaintances, but few good, close friends.

We lost a few good friends when our baby, Michael, died (way back in 1984). We found that a lot of people just didn't know what to say to us or how to act around us. I think they felt they could not, or should not be happy or cheerful around us.  

I am sure that is the same with RA - a lot of friends don't know what they should say or how they should feel. As the RA progresses, you lose friends because of your lack of mobility. You are no longer able to go on the camping trips, shopping sprees and even visiting friend's homes becomes difficult, at least for me. Not too many campsites are equipped with raised toilets or have easy access for wheelchairs. Everyone I know, besides my mother's home, has stairs. So in most cases, if family and friends want to visit, they have to come to me. My husband and I have both lost a few friends because of this.

Working is another issue with friendship. When you no longer go to work, due to pain and mobility, you don't have that aspect of socialization anymore. I know this also happens when Moms decide to be Stay at Home Moms (I should also add 'or Dads') and to those of us who work from home, through choice or necessity. Your work friends, after a while, disappear. Your interests are not the same and life seems to move on at a different speed for them.

I think this is why the RA blogging community is so great. When we write and read these blogs we become more than just acquaintances. As we learn more about each other, share our stories and some of the same issues we become blogging friends! 

Parenting With RA

The other day I was reading a post over at RA Warrior about housekeeping or the lack of for some of us with RA. Several readers commented on how helpless or frustrated they felt now that their RA has limited their abilities around the house.


This got me thinking about my RA parenting limitations. I have had RA longer than I’ve been a parent and have felt the frustration of my limitations several times over the years.


The first time was right after I gave birth to my daughter. As a lot of us know, RA often decides right after childbirth is a perfect time to give us a major flare up. I could barely get out of bed, let alone care for my daughter. As my daughter grew over the months I had difficulty lifting her. She learned at a young age if she wanted mommy to lift her, she would have to wrap her arms around my neck so that I could scoop her out of her crib. Instinctively, she grew quickly into an independent and caring child.


With my physical health getting worse I had to quit my job. (This is one time RA did something nice for me – I love being a stay at home mom!) Our doctor advised us not to give birth to any more children. So 10 years after our daughter’s birth we adopted our 2 sons, ages 2 & 3 years old. We thought that by adopting older children there wouldn’t be diapers to change and they wouldn’t need to be carried as much, and so on… Well, we adopted our sons from Haiti and guess what? There were diapers to change and as they were smaller than other children their age they did need to be carried more often. (Okay, this is another time when RA did something positive for me; I never had to change 1 stinky diaper, lol!) I also was not able to sit on the floor and play with my boys and I can’t do this with my grandchildren now either – I miss this!


The school system and my boys didn’t get along so we home schooled for the first 6 years, which was often trying as well as rewarding (darn, another positive). The hardest part was making sure they met the physical education criteria, but we managed with Tae Kwon Do lessons and Air Cadets.


During these years, my health did get worse and I went from cane, to walker to wheelchair; from the freedom of driving to being driven, from being able to do household chores & cooking to supervising (hmmm – another positive?). When I was driving, we had a 12 passenger van made into a wheelchair van; but once I was told by my doctor not to drive anymore, there didn’t seem to be a reason to keep the gas guzzler. Loosing my driving freedom hit me hard and my children too. They no longer had rides to school or to their after school activities. I miss not going to sports events but there never seems to be room for me and the wheelchair after you get the boys, their friends and all the sports bags into the car.


Disciplining children from a chair isn’t easy. I know I shout a lot more than necessary. But by the time I transfer from chair/couch to wheelchair they’ve heard me coming and have either stopped what they were doing or have disappeared. With the lack of mobility, I’m positive my hearing and intuition have improved. I can hear a room being trashed looking for school books or if the tap is left dripping; TV being turned on when their grounded, when they haven’t put the toilet seat down, etc.


I now have arthritis and damage in every joint from neck to toe and parenting hasn’t got any easier. But I haven’t come across a single healthy parent who would say parenting is easy. Our children are wonderful, resilient creatures and they learn to adjust to our limitations, often better than we do.


How has RA affected your parenting abilities?

Pain is Relevant

“I know my pain is not as bad as yours!” I hear this from friends and family all the time. What nonsense! Pain is relevant! It doesn’t matter where you hurt. What I think is excruciating and rate as a nine or ten you might only rate it as 6 or a 7. Pain tolerance and pain thresholds are different for everyone.If your body is sending the pain signal to your brain, it is pain!


I also hate when my doctor says ‘Rate your pain from 1 to 10’!


Why? Because it depends on what I’m doing or not doing, if I’m standing or sitting, on the day, hour or minute and on the medication I am taking!


Personal I believe pain tolerance is higher RA patients because we are constantly in pain and have conditioned ourselves to only acknowledge the severe pain. Besides if I commented daily on my pain I am fairly sure my family would, after a short period time, condition them to ignore me and my complaints. By only commenting on the severe pain they know it must be bad or I wouldn’t be saying anything.


Why do we have different pain tolerances?


Evidence has shown that genetics as well as developmental, behavioral and social issues affect the way we react to pain. I know that my daughter when she young was less likely to cry when she fell (unhurt) if we ignored or clapped our hands and gave praise that she was so brave/strong. Researchers found that those with one type of a gene called SCN9A reported worse pain than those with a different type.


Pain Tolerance vs Pain Threshold


Pain tolerance is the amount of pain that a person can endure before breaking down emotionally and/or physically. We feel the pain but we don’t react to it.


Pain threshold is the minimum stimulus necessary to produce pain. E.g. Arm wrestling – how much pressure can your arm take before you start to feel the pain.


Does swearing increase pain tolerance?


According to a CTV news story, some researchers beleive that swearing triggers an aggressive emotion which in turn causes the body to release adrenaline and increase the heart rate. This triggers a fight response to the pain in the person and raises their pain tolerance.


I don’t know if I agree with this. Personally, I try not to swear but occasionally a few swear words do slip out. Has this helped my pain tolerance? I have no idea. But if it is true my husband must have a very, very high pain tolerance, lol!


What’s your opinion, do you think swearing helps with pain tolerance?

My RA Story

My RA Story

I was diagnosed with RA in 1984. How did I get it? Good question –there are many theories out there about what causes RA, but the general consensus is that we are genetically disposed to the disease and it takes some kind of shock to our system to awaken the sleeping beast.

What was my trigger?

In December of 1983, I twisted my ankle coming down some icy steps. I was four months pregnant at the time and the swelling never did go away and then I was diagnosed with toxemia. Then in April of 1984, our first son died an hour and a half after birth. The pregnancy was great and we had no idea Michael had Potter Syndrome until he was born. The aches and pains got worse in my ankle and after two miscarriages they began to spread to my hands. It was suggested I not get pregnant again. My husband & I wanted more children so we applied for adoption. That same year, my husband had a work accident and could not work for the next 2 years. September, 1984, I was diagnosed with Rheumatoid Arthritis.

Diagnosis

My Rheumatologist was fantastic. He took one look at me and was able to diagnose me on the spot. He then sent me to have x-rays and blood work done for confirmation. Next, I was sent to the Arthritis Clinic to talk about range of motion exercises, resting/working splints, hot wax treatments for my hands and other ways to protect my joints. Showing me a video of a woman in her late sixties who was crippled up and in pain with RA was the biggest mistake they made at the clinic. I was 24 years old; I knew I was never going to look like that so I did not take the advice to heart. I will be 50 years old this year and that is the only big regret I have; I didn’t take that video seriously. If it had been of someone in their late 30’s or 40’s maybe I would have. My advice to anyone who has just been diagnosed with RA is to do the range of motion exercises 2 to 3 times a day, rest when necessary and use the splints as suggested. Do everything you can to slow this disease down!

In 1986, my beautiful, healthy daughter, Lisa, was born. Unfortunately, as with most of us with RA, after giving birth, my body was attacked again. I lost weight, was overcome with fatigue, and the pain was awful. Luckily for me my husband was still home from his accident and my mother was nearby so they were able to look after Lisa and myself. I was put on Prednisone, my symptoms began to fade and I was able to go back to work.

Naturopathic Stage

It was soon after that I decided to go to a Naturopathic doctor. At this point, I just want to say what works for some people with Rheumatoid Arthritis might not work for someone else. I was put on a specific diet and was not to consume red meat, white flour or white rice, processed food of any kind, shade vegetables and prescription medication. Needless to say, I was not very happy, but I stuck with the diet for 9 months and the end results were not what I had hoped. I got worse – this is to be expected at first, but I did not get better. As a matter of fact, according to my Rheumatologist, I had done irreparable damage to my joints and was bed ridden. I had to quit my job. The Naturopathic doctor finally said he could not help me. I was sent to a rehabilitation hospital for 3 weeks.