Keep Your Head up High and Keep Going

Written by the Inaara Jiwani for the RSDSA blog.

Woman wearing a white shirt and smiling in front of treesHow and when did you develop CRPS/RSD?

I developed CRPS after a ganglion cyst removal surgery on my right wrist in October 2017. A few months after the surgery I noticed that for some reason the surgery site was still tender and I was feeling much more pain that I was feeling before the surgery. My wrist would feel numb and a tingling sensation and I started noticing I could not do simple daily tasks. I went in for a second opinion on my wrist and we had tried physical therapy, occupational therapy, a Ganglion Stellate Block, Cortisone Steroid Shots, and many more “cures” to help me with the debilitating pain. Nothing helped me and I was diagnosed with CRPS type 2. 

What has daily life been like since your diagnosis?

Since my diagnosis, life has definitely been a struggle. It has become a lot of “thinking twice” when I want to do an activity and making many changes to my daily life. I can no longer do simple tasks such as opening a water bottle or some days opening my car door, or even picking up a pen to write. In fact, I had to switch majors.

I was on the pre-nursing track ready to take my TEAS when I just could not handle the pain anymore. I couldn’t get recertified as a lifeguard, and I definitely could not help transport patients had I gotten into nursing school. I have definitely become much weaker, and it shows. It is hard to explain to people what CRPS is without being emotional, but it is what it is. This pain is the worst pain imaginable and I would not wish it on anyone. But day by day, I have to tell myself that it will slowly get better and that I am thankful to wake up to a new day each and every morning.

What is one thing you wish those without CRPS/RSD could understand?

The one thing I wish those without CRPS could understand is that no matter how much I tell you about the pain or what it feels like, you will never be able to fully understand, and that is perfectly okay. We are constantly trying to keep going every single day, especially with the constant support from you all. I try so hard to keep a smile on my face even though it gets rough. I have bad flare days and when this happens I want to be alone and shut everyone out. When I have bad flare days and start to push away those closest to me, it’s NOT personal. Sometimes with the pain, I just need to be alone. Words of encouragement are always appreciated, and I am so thankful for every single person in my life who is trying hard to understand exactly what Complex Regional Pain Syndrome is. 

What advice would you give to newly diagnosed Warriors?

Advice I would give to newly diagnosed warriors is to keep your head up high and keep going. It will get hard and I cannot lie about that. Some days you’re going to wonder, “why me?”. Other days you may be very emotional and you won’t have any energy. The pain may take over but you need to remind yourself to keep going. Keep going and stay positive. Understand that this is just a part of life and that everything happens for a reason. You are going to be okay. You have the support from those around you to keep you going and keep you smiling. It will all be okay. 

What encouragement would you give to Warriors who have had CRPS/RSD for many years?

You are doing a phenomenal job at keeping up with everything. Life can get hard, but you are a strong person. You are only given what you can handle in life and knowing that every day is a new day should be a fresh breath of air. You are hanging in there and you leading by example how strong of a person you are. You are strong and you need to believe it. 

What activities or treatments have helped you find temporary or long term relief?

Activities that help me are swimming and some mindfulness/meditation techniques. Another activity that has immensely helped me is making resin art pieces. I started a small business over the pandemic called, “resIN by Inaara” in which I sell resin art pieces. When I work on resin pieces, all my focus is on that and it helps with keeping my mind away from the constant pain.  Learning how to manage the pain can be a struggle but once that activity is found, it’s like an escape. 

Anything else you would like to add?

I know CRPS is tough. I know it is terrible and you wish you were never diagnosed with it. I know at times you may feel trapped and feel as if no one truly understands. I know it can get tiring repeating exactly what’s wrong with you and answering questions such as, “Well how can you cure it?”. I know it gets frustrating when doctors can’t give you an answer and when all they can say is, “I’m sorry I can’t do much to help you. But you do understand that there is no real cure to this.” I get it all. It is tough. Some days you feel bad complaining about the pain thinking there are others who have it so much worse than you do. But learn to never give up. Keep trying. Every smile on your face is a win. Every minute that you are not in pain is a win. Lastly, you being you and being such a strong being is a win. Never lose sight of that. 

Connect with Inaara via Instagram at @inaarajiwani.

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