Wednesday, December 3, 2014

The stages of Rheumatoid Arthritis

Yesterday I went to see my Rheumatologist. It was a follow up appointment to review some X-rays I had done on my hands and my right knee. Each of these joints had been affected by some recent inflammation and my Rheumy wanted to check to see if there had been any significant changes in the last few years. I had even forgot about the appointment and that I had even taken X-rays to be honest. As I sat in the waiting area I remembered that I had taken the X-rays after the last appointment so when I walked into the room and saw this image my heart sank a little.

Rheumy: Oh, there are some changes...ouch
Me: Ouch, like bad?
Rheumy: Well, not good...

I sat there as he explained to me that since my last X-rays in 2011 there had been moderate to severe changes in some of my joints. As pictured above, my knee has not changed that much which I such a blessing. I have heard that knee replacement surgeries are the worse, but my wrists on the other hand, have had some major changes in the last three years. So much so that I cried and he showed them to me and that is why I don't have an image for them.

We talked about things that I could do to save my joints. He explained that they could never get better, but that they could be preserved with medications like the current biologic that I am taking (enbrel). He asked what I was doing for work and I told him I was a stay at home mom for the time. He nodded that it was best to avoid all repetitive motions or else in ten years I may need a wrist surgery. The wrist is at a point that soon the mobility in it will be bone rubbing bone and the pain will be unbearable that a surgery would be the only way to help it.

Rheumy: Let's put it this way, if your friends are having a fundraiser and they want you to fill up bags with stuff you have to tell them no that you would man the phones instead.
Me: Sooo, is crocheting out of the question. I crochet for hours almost every night...
Rheumy: Of course you can do it, but should you do it is the better question. Do it for 20 minutes a every other day. Thats it.

He then started to talk about raising my little one and that I needed to think about how parenting her in 10 years might look like if I continue to abuse my joints. I cried as I explained how hard it was now having a toddler that you couldn't really get on the floor with without thinking of a perfect plan on how to get up without dislocating a hip. (I have bilateral hip replacements and can not lift my knees of 90 degrees or else my hip will dislocate). I continued to sob at this point about how sorry I felt for my daughter that I couldn't run around with her at the park for example. He asked me one more question..."is your daughter a happy kid?'. I laughed and said yes.

Living with RA has been a long battle with lots of ups and downs. For me the battle has been for 30 years now and only in this moment is the reality of what a possible future might look like for me. My body is not like it was 10 years ago or even what it was like 3 years ago. I can feel it. I notice a major difference. Having a little one makes you look at life very differently. Before being a mother I would have responded to what the Rheumy said with crocheting a dozen blankets in a single week just to show him that I could, but I heard his message differently this time.

It's not that I can't do things, its I shouldn't.

I don't think I could give up crocheting forever. I mean I have been working on a sweater for the last week that I will finish. Instead of doing it all this week, I give myself the month to get it done. As for my Esty shop, there will be a refocus. For right now, I am sad.


  1. I'm sorry you got such bad news :( It's not the same at all, but a few years ago I injured my knee badly enough that my doctor recommended I stop jumping horses. I weighed the pros and cons, then decided to keep jumping, though much less than before. I switched my main focus on riding to dressage (flat riding) but I love jumping too much to give it up entirely! I hope you feel better about things (and feel better, period!) soon!

  2. Pain is pain Holly and it sucks so its totally the same. Isn't it so hard when you have such a passion and knowing while you are doing it in the back of your mind that it might be hurting you. I think the hardest thing is that because its internal the damage is not visible which makes denial so much easier. Good for you for continuing. I think I just have to find my balance. Instead of crocheting for 3 hours a night straight I have decided that I might just do it twice a week. The shop is really what will have to change, but, in all honesty, it wasn't really doing well anyway so it may be for the best to have a refocus anyway!