I don’t really like to talk about my RA – especially on my blog because often I feel that it’s a depressing topic. No one wants to read about aches and pains. However, lately I’ve been feeling a lot of comfort in reading RA blogs .. knowing that other people are experiencing the same things that I experience and that I’m not alone. Often when I tell people I have Rheumatoid Arthritis – I get the standard responses
1.)Oh I have arthritis in my _______ (fill joint in here).
2.) My mom/dad have arthritis.
3.) You’re too young to have arthritis.
4.) Oh but you look so healthy.
The truth is – and it’s been said a BILLION times by people with RA – is that it’s NOTHING like your arthritis, it doesn’t matter how old you are (children as young as a 1 year old are diagnosed with RA), taking good and healthy takes A LOT of effort and time.
Everyone gets an ache or pain. Some people live with chronic pain – a slipped disc, trick knee, TMJ, stiff fingers, bursitis – and my heart breaks for them. I feel their pain – literally. Unlike everyone – the RA/Lupus/Scleroderma (YES! THEY’RE ALL RELATED AND OFTEN SHARED) sufferer deals with Chronic pain, a plethora of medicine, a lifetime of forgetful-ness,a nauseating fatigue,a faulty immune system and a billion other health problems. It’s basically the shake it up and guess what’s wrong today – disease. The past 4 months alone – have included 3 UTI/Kidney infections, 2 URI’s, 1 stomach virus and GOD only knows what I’m going through now. Ironically, this has been a good run. The Xeljanz is working. HA. I’m a 33 year old that has been living like a 80 year old – for the past 5 years. I stood online in Motor Vehicle on my 33rd birthday for a Handicapped Placard (which got me and continues to get me A LOT of dirty looks btw).
I’ve tried holistic, alternative and traditional medicines. I’ve tried taking out dairy and gluten. I’ve tried acupuncture and chiropractic. I’ve tried probiotics and vitamins. Teas and shakes. They work – but it’s only temporary. Anyone with an autoimmune disease will tell you the same thing: it’s only temporary. Flares are temporary. Remission is temporary.
Often I put on a brave face, laugh a lot, smile and try to stay positive. Sometimes – it’s tough.Some days I cry. I’m a good faker. It’s not easy … but I figure what’s the alternative?
A friend of mine with Lupus told me the other day … “It is what it is …” A mantra I remind myself of daily.
Unfortunately, there isn’t enough awareness out there.(Hence the dirty looks) Commercials showing middle aged adults building playgrounds or retired golfers signing autographs IS NOT the reality that people with RA experience. It’s not the reality that loved ones of people with RA experience. Truth be told – majority of RA sufferers are much younger than middle age. There is a whole gaggle of us – out there blending in with the ordinary folks.
I’m tired today. I’m tired of this week. I’m tired of always staying upbeat. I’m tired of feeling 80. I’m tired of gardening. I’m tired of my pups, the goats, the fabulous frost farm. AND most of all … I’m tired of being sick.
Lesson here being: Don’t take bending over, wearing heels, caffeine highs, planning trips, walking up a flight of stairs, cooking, cleaning, playing with the kids and waking up with that overall “age” grogginess – for granted. There are people out there who truly wish they could actually do those things. And some days I can ……
Some awesome RA links:
With RA comes a whole onslaught of other diseases/conditions. Here are some that I’ve found helped me with I was diagnosed with other conditions:
- http://www.livingwitherythromelalgia.org/ (erythromelalgia)
- http://www.fmnetnews.com (fibromyalgia)
- http://www.sjogrens.org (Sjogren’s Syndrome)