Arthritis Awareness Month


May is Arthritis Awareness month.  I have seen some good lists of facts and experiences in blog posts and memes, but I want to share some of my own experiences.

1. Rheumatoid Arthritis and other inflammatory arthritis and related conditions are not your run of the mill "I have arthritis in my ankle and take Aleve and it feels better" arthritis. My experience is with RA and fibromyalgia, so that is the place I speak from in my posts.  RA is an autoimmune disease that has systemic symptoms along with joint pain.  My grandfather had Lupus and his sister had RA, so in my case there is a genetic component along with any environmental triggers that led to the development of my disease in my late 20s.

2. I may look fine, but when my disease is active or I am in a flare, I am sick and may be in pain and feel rotten.  RA can be a mostly invisible disease, unless a joint has so much damage that it is deformed or causes a limp or awkward movement or if I am wearing a brace.

3.  Fatigue and brain fog are as debilitating as physical pain resulting from joint inflammation.  When one's immune system is wonky and active it is draining energy from the reserve.  Some days I feel like I am walking through pudding, like every step takes double the effort of a good day.  Some days I struggle to find words to complete my thoughts.  Some days taking a shower, getting dressed, and commuting to work take up 75% of my energy for the day.  And it sucks.

4. I have been lucky to be well controlled by infusions every 6 weeks, weekly shots of methotrexate, and daily anti-inflammatory drugs.  I went for weeks at a time without daily pain.  Since January I have been in a flare which means that my disease has been active.  I have had almost daily pain, periods of fatigue, and have been taking steroids to try to quell the inflammation which causes joint damage.  I usually don't want to talk about it.  I never used to even acknowledge it when people asked how I felt, now I do, I am honest.  I feel crummy but am making the best of my day...

5.  When people suggest dietary changes like going paleo or giving up gluten I want to scream.  I know that it is often coming from a place of concern, but it feels like you think I haven't bothered to try to feel better.  I would not be able to function daily without the meds and infusions.  I have given up nightshades and felt no different.  I have given up artificial sweeteners and felt no different.  I have incorporated an almost daily yoga and meditation practice and though I feel mentally better, it has not made my disease disappear.

6. I get sad, angry, frustrated, and sometimes snarky when I am feeling really crummy.  I allow myself to feel what I feel but I always try to come back to a place of gratitude for all that I can do and be.  I tend to isolate when feeling bad, but lately I am trying to push myself to be more social.  It is hard because I do not like to feel vulnerable and when I am uncomfortable or in pain I feel very vulnerable.

7. I am stubborn and will sometimes push myself too far, do too much, do something that is clearly not a good idea.  I have a right to do that and I will pay the consequences, so just let me do it.  That being said, there are a few things I have asked Christy to remind me about when I attempt them...

8.  These diseases can limit and challenge those of us living with them, but they also present us with the opportunity to grow and become very resilient.  I am more creative and accommodating in how I do certain things because I needed to work around a physical limitation.  I am more patient with my body and do not take it for granted when I do feel well.

9. You can ask if I need help with things, it is very nice.  I may not always take you up on it or I may always take you up on it.  Whenever I am with certain people and we sit down for lunch, I don't even have to ask anymore, they just grab my water or juice and open it for me.  I love that.  I love that Christy instinctively puts her arm out for me when we reach a curb or stair so I can hold on to steady myself.

10. RA and other similar diseases are under funded, not well understood, and yet they affect over 50 million Americans.  That is 1 in 5 adults and over 300,000 kids in this country alone.  I didn't do the Arthritis Walk this year, but I will be donating to the Arthritis Foundation.  Here is a link in case you feel inclined to contribute.

Thanks for reading.  I know I don't often open up in this much detail, so I appreciate your taking the time to "listen".

Peace.

Comments

  1. This is great info. I am guilty of suggesting the Whole 30 program to you , (After I read in the forward that one of the Authors had found the plan helped lessen their RA symptoms. I can understand how frustrating that can be, you know your body, you have probably tried everything, you simply know what does and does not work at this point. I think people underestimate how much chronic pain can affect ones mental well being. I applaud you for still being you despite the fact that you very often feel pretty crummy. I love you! xo

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  2. I wasn't upset with you for suggesting it. I appreciate that you care about me and thought of me when you read it. In this case someone specifically found relief from RA so it was relevant. It is often a lack of understanding that something that works for one person will not always work for another. I know that some people have found relief through dietary and lifestyle changes and that is fantastic for them, but there is no food cure for an AI disease and that is where I get frustrated. You know me, I am all about wholistic approaches. I am 100% sure that gut health, mental health, and immune health are all linked, as evidenced in numerous scholarly publications. It is hard to find doctors that take that approach. Thanks for reading! XOXO

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  3. Hi there, thanks for the post. I am dealing with psoriasis (an autoimmune disease) from last 11 years and I can definitely relate to your feelings. Unavailability of any concrete treatment and stubborn nature of psoriasis is quite frustrating sometimes. Also, the lack of awareness among common public makes it worse. Last year, I have initiated to organize a Psoriasis awareness get together meet in New Delhi which was attended by 10 participants. It was an amazing experience for all of us. When you meet other people having similar life struggle and experiences- it is quite an liberating experience. This is the meeting report- Psoriasis Awareness Day Meet at New Delhi, India

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