The floors in my house have been an arthritis sufferer's worst nightmare, hard tile, unpadded carpet, and linoleum. This week we had it all ripped out. Our replacement, a gorgeous Santos Mahogany wood floor. We chose the floating wood rather than glued down because floating is supposed to be easier on the joints. I also got the highest quality pad that was laid down underneath the wood for extra added comfort. Wow, it's more comfortable to walk on than my carpet. I have even been going barefoot.
April 12, 2013
Online support groups like this have been extremely helpful to me as I battle PsA. I learn from the experiences of other arthritis sufferers. Today I learned this:
A couple of years before my joint pain began I got bronchitis a couple of times and then pneumonia. I never felt like I fully recovered from the pneumonia. Sure my cough was gone but I had this constant heavy pain in my chest and could never take a deep breath. After months of struggling I was referred to a pulmonologist. I was tested for asthma which came out negative yet the doctor put me on asthma medicine. When those inhalers didn't seem to work she put me on COPD medicine which did little to alleviate the heavy chest feeling and rib pain. Telling me my chest cavity must be bruised was the best the pulmonologist could come up with so I decided I was done with her. Then a few months later the arthritis started and the rheumatologist became my new doctor.
A few months after I started Enbrel it dawned on me that I was able to breathe freely, no pain when taking deep breaths. My lungs were back to normal. I told my rheumatologist this and she seemed puzzled. Whatever.
Then, today I find out, from an online support network of all places, that I'm not nuts. There is a condition called costochondritis, a form of inflammation of the cartilage where ribs attach to the breastbone. Illnesses such as psoriatic arthritis and ankylosing spondylitis feature costochondritis.
The puzzle pieces are fitting together...the years of foot pain (which I was always told was due to flat feet but was really enthesitis), chest pain (which I was told was asthma etc. but was really costochondritis), jaw pain (which I was told was TMJ but was really arthritis in my jaw joints). All these conditions were centered around the same spondyloarthropathy diagnosed years later. And these issues have been resolved using Enbrel (except for the enthesitis, that nasty pain won't go away for anything).
I'm a problem solver and love it when the unknown falls into place.
March 15, 2013
It looks like I'll be trying something new. My stomach hasn't been tolerating the methotrexate well over the past couple of months so my Rheumatologist is switching my meds, taking away the methotrexate and adding Arava (leflunomide). I get to keep the Enbrel and meloxicam, yea! After reading the warnings for Arava I'm a little nervous to take it. I thought methotrexate was pure poison, but Arava is like the meaner twin sister. I have a feeling I won't last long on this drug. There's a 20% chance of stomach problems so I'm sure to be in that minority. All I want is access to the methotrexate injection so my stomach isn't torn apart by this drug. Why is there still a shortage? It's been years now...just make the medicine! Why does it have to be so difficult? Thousands of cancer and arthritis patients use this drug every day and it is critical to the treatment of both conditions. What is the hold-up?
February 15, 2013
Yet another piece of arthritis advice received via email:
2 spoonfuls of honey and 1 teaspoon of cinnamon in hot water to drink twice daily.
I think this is one of the more ridiculous arthritis remedies. But, just to make sure I did my research. Many online sites claim it helps with inflammation, that a study was done by Copenhagen University. I discovered that Copenhagen University never conducted such a study, that cinnamon has anti-inflammatory properties but if taken in high doses can be toxic, and that it is important to do a thorough research of every piece of advice you intend to try. Even those things that may seem harmless can have dire consequences.
January 12, 2013
January 01, 2013
Christmastime is stressful. The last 2 Decembers I went on prednizone for a couple of weeks to get me through the holidays. This year was no different except I did it without doctor approval, oops. I was out of my prescription so I have been using Maddie's prednizone pills from a prescription that we filled months ago. Her rheumatologist wanted us to have the pills with us in case of a flair during our big summer trip. With the constant rain, cold, and stress this season brings I knew I couldn't get through the holidays without some extra help. For a few days with prednizone I felt normal, free of pain, free from fatigue, like my old self. And that's how I got Christmas ready for my family of 6, how I got through my December musical performances, student piano recitals, working back stage at my girls' performances of the Nutcracker ballet, and even completed a bit of holiday baking.
Maddie was supposedly in a "remission" having gone 7 months without a flair. Yea right. Last week she woke up with a stiff and swollen ankle. Classic flair. So far it's just been this one joint which is good because with multiple joint flairs I'm supposed to give her prednizone, the exact pills I've been taking for myself. Big oops! For now we are giving her naproxen and hoping her flair doesn't worsen. All fingers are crossed.
December 16, 2012
This was my life before arthritis. My Decembers were filled with so many concerts I didn't have time to breathe. I directed several, performed in some, and observed others. As my kids started getting older they started having concerts too. On Friday I went to one of the concerts I used to direct, Melody Makers, two large children's choirs at my kids' elementary school. I turned the baton over to a new director two and a half years ago and she vows this will be her last year. I'm getting pressure to direct once again. My heart wants to. My body knows it can't. It makes me sad. I want my old life back. I want to be that power woman once again who juggled a million things at once, who tackled the music world head on. I want to organize and direct concerts. I want to perform again. I want my body to have more than 8 hours each day to get things done. I hate that I've turned into one of those "incapable" people. I want to scream "THIS IS NOT THE REAL ME!".