When we honestly ask ourselves which persons in our lives mean the most to us, we often find that it is those who, instead of giving much advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a gentle and tender hand. The friend who can be silent with us in an hour of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate no-knowing, no-curing, not-healing and face with us the reality of our powerlessness, that is a friend who cares. – Henri Nouwen
A few weeks ago, I met with my pain management doctor. I already knew what she was going to say before she gave me the difficult news. Yes, my CRPS/RSD is back (i.e. no longer in remission). I had known it in my gut for a couple weeks. I thought I had the pain under control. I just needed to make some lifestyle adjustments and maybe it would quickly go away again. However, the pain and symptoms grew worse. It was now time to take more aggressive measures. For the rest of the appointment, I was in a state of both denial and acceptance if they can really co-exist. I had enjoyed a good 9-12 months with little to no CRPS/RSD pain. During that period, I made the naive assumption that CRPS/RSD was gone forever or at least wouldn’t return for a couple years. Yes, it is back. I knew it; I just didn’t want to fully admit. I still have flashbacks and nightmares of those couple years with CRPS/RSD pain; I never want to return to that state again. I knew already what the next several weeks would hold for me: multiple doctor visits, several procedures, and the dreaded drug trials.
These past few weeks have been what I expected and yet a few pleasant surprises have occurred. Ironically, I’ve been both in a state of grief and thanksgiving. I met with pain psychologist soon afterwards (Btw, if you don’t have a pain psychologist, I highly recommend you asking your doctor if there’s one in your area. I can’t tell you how much pain psychology has helped me over the past few years.) She was encouraging me and reminding me that I have the tools to work thru this CRPS/RSD flare. I already know what to do so trust myself. However, one thing I’m surprised she didn’t mention is to allow myself to grieve. Yes, I have pain management tools to overcome this flare, which I am very thankful for, but I still need to process the emotional effects of this setback.
I’m sure you are familiar with the 5 Stages of Grief (the Kubler-Ross model):
Until I had chronic pain, I assumed grief only came with the death of a loved one. However, grief comes in many forms: a miscarriage, divorce, loss of job, illness, etc. I remember when I first walked thru the 5 Stages of Grief after being diagnosed with CRPS/RSD. At first, I had a difficult admitting that I was, in fact, grieving. It’s not a pleasant process; however, it is quite healing. Now I’ve accepted that grief is a normal process of human nature to deal with change. I’ve realize now that I have walked thru this process several times over the past couple years. I have developed an interesting analogy of grief, which may or may not be helpful. I remember learning in my college music class “Form and Analysis” that a piece of music has an overall form (i.e. I-IV-V-I) but it also can have that same format occurring throughout the piece on smaller levels. I think this happens also with grief. I might process grief’s 5 stages as quickly as one day. However, I might be working through a larger grief pattern at the same time; one that takes a couple weeks or months. And it’s okay. I will most likely be better for it.
Over the past couple years, I’ve learned the importance of thanksgiving, especially for those living with chronic pain. It helps you fight depression and keep a positive outlook on life. However, during the past couple weeks, it has been a constant theme for me. Maybe I wasn’t at the time, but now I am so thankful for those months of remission. I wasn’t 100% healthy during that period; yet I enjoyed those days of lower pain levels and more energy/stamina. I was more active, more involved in things I love, and enjoying life each day. Those were happy months for me. Also, I appreciate what my pain psychologist said: I do have tools to overcome this flare. All those hours of working with my medical team and researching pain management techniques have and will continue to benefit me. I’m not sure how long this flare will last but I am well-equipped. I’ve learned to be thankful for the big and little things in life whether it’s the feeling of spring in the air, a few minutes of solitude, walking without assistance, dark chocolate, support of family and friends, etc.
So I will leave you with a few thoughts: How do you view grief? Have you found yourself in a better place (figuratively) after grieving a loss or difficult change in your life? Also, what are you thankful for today? It can be a small pleasure or a big success. Today I’m thankful for sunshine, coconut tea, and laser acupuncture (I’ll talk about that in a future post). I hope you all have a wonderful weekend; God bless!
Welcome to the blog “Continuing with Life!” Let me introduce myself: I’m Amy. I’m a young adult who loves the simple and beautiful in life. I enjoy life by the water. My favorite room in the house is the kitchen. I have a wonderful family and awesome friends. I’m usually singing along to music as I go about my day. And, yes, I deal with chronic pain.
So, for a quick medical overview of myself: it all began with a bad fall resulting in a severe sprain approximately 7 years ago. I was finally diagnosed of Complex Regional Pain Syndrome (CRPS – I)/Reflex Sympathetic Dystrophy Syndrome (RSD) in the spring of ’09. So, I guess one could say that I’m a classical case of CRPS/RSD but more on that later. I learned very quickly that pain conditions come in package deals. In the fall ’11, doctors told me I was also dealing with Fibromyalgia (FM). Then, in the spring ’12, I found out that I have Gastroparesis. And, finally, in the summer ’12, I was diagnosed with Inflammatory Arthritis (IA); they sub-type is unknown for now. Okay, I think we’re up to date.
What is this blog about? Yes, it is about living life with chronic pain. No, it will not be a chronicle of my personal experience. I think we all should respect each other’s personal boundaries. So I will not be relating every detail of my health care and don’t expect you to do so either. So, needless to say, this will NOT a “TMI” (i.e. a “too much information”) blog. However, I would like to share with you life lessons & helpful tips, discuss available treatments, books, and research out there, and maybe have a laugh or two along the way! I also encourage you to comment and ask questions. I certainly don’t know everything about chronic pain, and each of us has had a different experience with it. Also, I will not sugar-coat the reality of chronic pain but I will not dwell on its negatives either. With a life filled with pain, one needs hope, joy, and laughter to make it through each day.
I should be upfront about a couple things. I’m NOT a medical professional and will not pretend to be one. I encourage you to talk with your doctor and ask him/her questions about your condition(s), available treatments, etc. I’m also not a writer so bear with me 😉 I’m one of those people that would prefer a test over a paper any day haha! I can’t promise that I will post every day but hopefully a couple times a week. Finally, I ask for your patience as I continue to construct this blog. Hopefully, it will come together over the next common months…
So, my goal and hope is that the “Continuing With Hope” blog will be an encouraging and positive read for those who are involved in the chronic pain community. We come from different backgrounds and lead different lives; our pain affects us in different ways; we each have a different experience as we work through recovery & rehabilitation. I look forward to learning from and with you in the future!