Faith from the Edges

Faith and life from the perspective of me.

Archive for the tag “rheumatoid arthritis”

Remember me?

Hi there – it’s me again – remember me? I know I have been away from here for awhile. There are lots of reasons for that, but the main one has been an ongoing flare due to my rheumatoid arthritis. This past winter and the early spring have not been great. Fortunately for me there is now warm sunshine, low humidity and high barometric pressure. I am so ever grateful for the reprise and that now I can get back to those things that really give me life.

Remember me?

Tea on the Deck

Like sitting on my deck in the afternoon sun enjoying a cup of tea and getting some writing done. It is a wonderful feeling and I’d like it to stick around a bit. I feel like my spoons are getting filled up again. Here’s a good link that explains the spoon theory. I feel like I have some energy to get some personal and work tasks done and done well. It gets hard having to explain to those who don’t have a chronic illness what is like to live with one all day, everyday. There is no such thing as a break from this – there are only good days (that are low pain) and bad days (which are high pain). Today and the last few days have been good days.

Here I am back at least for now and if I disappear from here for a bit, you will know why. I am gong to enjoy these days and hope that with good pain management there will be more to come. Now I have a garden and yard waiting for some attention and they are going to get it!



Chronic Pain is not my Friend

As most of you know dear readers I live with a chronic condition – rheumatoid arthritis – I also have bursitis in my right hip. Neither of these conditions are visible so that makes them part of the invisible illnesses that many of us live with every day. This past winter has not been great for me. We have had a lot of humid days and  not enough cold, cold days. This has meant that the inflammation in my joints has been at times overwhelming and present All The Time!


Inflamed joints – thank you RA

This picture is one I sent my best friend and my sister a while ago. My hands were so painful that I was in tears much of that day – therefore the title of this blog. The only thing I can do when this happens is to stop, take some extra pain medications (on top of the other medication I already take) and rest. Which is what I did.

I also live with peripheral neuropathy which was caused by the chemotherapy drugs for my cancer. Not everyone who has chemo has this side effect but I do. It means that my feet have constant numbness. tingling and sometimes excruciating pain. It’s hard not feeling parts of your feet and getting used to always having some kind of shoe on because you can’t feel where your toes are. Again an invisible condition and one that I am learning to cope with.

Here’s what’s been happening lately. I am dealing with a feedback loop of pain between my RA flares and the neuropathy in my feet – which means that sometimes I can barely stand up on my feet and the numbness and tingling begin to go up my legs. Chronic pain is not my friend and it is definitely not the dear one’s friend as he has to pick up the slack of what I can’t do during these times.

Now you may be asking why I am sharing all of this with you. I mean really does anyone else need to know? Obviously I think the answer is yes, but I know others may not. Here are my reasons:

  1. When I am in pain it becomes very difficult for me to engage with anyone in a good way – whether it is on social media or in real life. I am grumpy and can barely focus on what others are saying to me or asking me to do. So when I get quiet on social media this is why.
  2. This affects my mental and emotional health – it is hard to stay sunny & energetic when you just want to curl up with a warm blanket and your cat – it is hard to get past the pain. Mostly I do but often I don’t. There is a clear connection between my pain levels and my mental and emotional health.
  3. Resting because of bad pain days does not mean I am lazy it means that I am taking care of myself. I am saying that here because we all have that voice in our heads that says things like that and I am learning to give myself permission to just stop and take care of me. If I don’t take care of me I won’t have the energy to do the things I am really passionate about.
  4. So much of what those of us with chronic pain go through is invisible and unspoken. We don’t want to be seen as whining, not strong enough, not together enough. We want to be perceived as independent, strong, capable people and mostly we are, just sometimes we aren’t. I want to be able to ask for help when I need it without the added stigma of incorrect perceptions.

Here I am today, feeling mostly okay. The pain levels are at their most manageable and I have been able to get this blog post done. My commitment to myself is to give me a break and to also give others a break. We are all dealing with stuff and we are all, mostly, doing the best that we can.


Pain Days or Hope Days

I had hoped that my first post of 2015 would be the words that I am going to use to inspire me through the year (it is coming just not ready yet) but life has a way of throwing curves at you. My big curve has been this ongoing flare I am having as a result of my rheumatoid arthritis. I am so tired of pain days, of not being able to function as well I would like, of limiting my activities because everything hurts. Today is one of those days.

I read this article today about how it feels when you live with RA. It made so much sense and I have shared it around so that others may understand. I have been in flare mode since early June of last year, nearly 7 months. I finally get to see a new rheumatologist next week. I am so ready to be over this and living more normally again. The dear one is so ready for that to happen as well.

I posted this photo on my Instagram account today which I always share on my Twitter and Facebook accounts as well. I described it as pain face, because that is what it is.

2015-01-22 13.14.51What continues to surprise me, and really shouldn’t at this point, is the love and care that comes from my friends when I share with them how I am doing. I am so grateful. It is what keeps me going. It is what gives me hope.

I am hoping that next week I will have good news to share with everyone. That I am on a new treatment and that things are looking up in that regard. It is hard on days like today to have hope, but I am doing my best to do just that, have hope.

Even though today has been hard and thinking creatively has been even harder I am going to hang onto hope, because without that this would be even harder.

Where do you find hope when life throws curves your way?

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