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.

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.

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.

My RA Story - Part 2

Part 2

Over the next 15 plus years, I was put on a variety of medications – Advil, Methotrexate , Celebrex, Imuran, Plaquenil, and so on. The only medication that helped was Prednisone and I was on that for years. I have gone to physiotherapy, often coming out worse than when I went in. Acupuncture didn’t help at all and the pain was excruciation – I should have clued in when the Acupuncturist pulled out his textbook to figure out where the needles should go. The only non-medicinal therapy I found that really did help was Reflexology.

Adoption

We were still waiting for a child to adopt, a brother or sister for Lisa, when we had a heart to heart with our social worker. Apparently, she had blackballed us. She had a grandmother with RA and did not feel I could be a good parent. By now, I was using a walker and my hands were beginning to deform. Still, how could she make a decision like that - saying I could not be a good parent!  Just because I was not able to be physically active with my children, it would not make me a bad parent. Most of parenting comes from the heart and I knew I had room for more children in my heart. The only way around this blockage was to move to a different side of town, which put us under a different district and a new social worker. We adopted our 2 sons, Dez & Ron (3 & 2 years old) in 1996, nine months later. Side note – I have found that since I do not have the mobility most moms have, my hearing and ‘mom intuition’ have both increased.

Hip Joint Surgery

In 1999, my right hip pain was unbearable. The Morphine I was taking barely touched the pain. I had x-rays done and it was decided that I needed my hip replaced. If you need a hip joint replacement surgery, don’t put it off. Ankle surgery, well …. I will get into that a little later. The night after my hip surgery, I did not need Morphine or any other pain medication. Shortly after that, I was sent for another 3 weeks of rehabilitation. There, the doctors and Physiotherapist decided I needed to use a wheelchair to protect my other joints. The Occupational Therapist suggested I get a long shoehorn, elastic shoe laces, a dressing stick, key turner, special jar opener, etc. All of these aids do help make life a little easier.

Wheelchair

Wheelchair life stinks, at least for me. I give kudos to those wheelchair riders who have not let it limit their lifestyle. I just do not seem to have that in me. I hate needing someone to help me transfer from wheelchair to vehicle and back again and having to be pushed everywhere we go. A wheelchair van would definitely make life easier, but as with most of us, it is not in the budget. When my GP said I could not drive anymore due to my RA neck damage in 2004, the independence I had behind the wheel was gone. It was around this time my Rheumatologist, looking at the amount of neck damage on an x-ray, said I must have had Juvenile Rheumatoid Arthritis as a child. This explains all the braces on my legs when I was a toddler, special shoes, stomach problems, being diagnosed with mononucleosis every 2-3 weeks as a preteen and poor stamina for Physical Education. Leaves you to wonder, had I been diagnosed correctly, would I be healthier than I am now? Who knows and, at this point, it does not really matter. 

My RA Story - Part 3

In 2009, I had my left hip done. I was not in as much pain with this one, but the clicking and clunking was unreal. I do not feel this surgery was as successful as the first one. I had a severe asthma attack coming out of the anesthetic. I still feel some aches with it, but the noise has definitely stopped. At this point, my GP ordered ankle and knee x-rays too, and the Orthopedic Surgeon suggested I have both knees and ankles done so that, perhaps, I could walk again.

The ankles were the worst, so they would need to be done first. When you look at the x-rays all you can see is fuzz, no bone. Ankle replacements require 6 months recovery time and at this point they only have about an 8 year life span. So it would take approximately 2 years for complete recovery from both and then they would need to be done again or fused in another 6 years. My GP does not feel my body can handle all of these surgeries and I now agree.

However, I did research the ankle surgeries and spoke to another Orthopedic Surgeon who said, although the risk was low, there was still a risk with complications and infection which could lead to having my ankle/foot amputated. I decided no thank you! I do not know about you, but I am quite attached to my foot and it is still very useful even if I cannot walk on it. I can live with the pain, at least for now, maybe in a few years they will make ankle replacements that last as long as hip replacements and without so much risk.

Well that brings me up to date! 

I think I did a fine mothering job with my daughter and my teenage sons are still a work in process : ) Being a grandparent is the best! My little 15 month grandson has learned how to climb up onto his Nana’s lap and maneuver around me in my wheelchair, as I’m sure my granddaughter, arriving in June, will too.

Are there things I would like to be able to do? Of course, I would love to be able to cook in my kitchen, play with my grandchildren on the floor, and babysit them on my own! But my shoulders, neck and hands just cannot manage those things. Accepting one’s limitations is often the hardest thing, and most of the time I do.

I have been blessed with a wonderful, supportive husband who does everything I cannot around our home and never complains. I have great parents, thoughtful children and an amazing friend, who help me through both good and bad days! I would never have made it this far without them and I thank them!