Heart Sisters

Heart Sisters

By Cynthia Toussaint

As we all know, Valentine’s Day is reserved for lovers. But I was reminded this morning that we women with high impact chronic pain need support and love that only sisters in pain can give. And these bonds are life-preserving.

Cynthia Toussaint

I’m in the midst of a body and soul crushing time – one of the worst I’ve experienced. It began with a bursitis flare in October. Then I got walking pneumonia followed by mold poisoning due to water damage in our condo which has left my life-partner John, me and our two kitties displaced for five weeks and counting.

When I finally regained my energy and what I thought was my health, I delighted in going back to the YMCA to resume my heavenly swimming. For me, doing laps is the only freedom I get from my CRPS pain. It’s my joy – and I was certain it would take two weeks tops to regain my mile work-out.

I was stunned to be weak and shaky when I first got in the water. By the end of the second week, I was scared because even 30 laps were making my legs heavy and the burning pain was off the charts.

This past week I’ve decreased my laps, yet the pain has continued to amp so much I can barely walk or sleep. I’m at an almost constant level 10 pain and I fear I’ve lost my nine year remission. Like I said, it’s bad. Really bad.

Yesterday I saw my wonderful integrative doctor at UCLA’s East-West clinic. Dr. Chen’s the only physician I have who truly understands auto-immune diseases and how the whole body works – and doesn’t work – together.

Dr. Chen was visibly angry because of the many medications my western doctors put me on during my illnesses. He explained how the cortisone injections and anti-biotics greatly lowered my body’s resilience, most viciously attacking my lower body as that’s where my disease started, thus my weakest link.

I left Dr. Chen’s office sad and defeated. After 35 years of pain, I don’t feel like I can go back to square one. Everyone I know without pain says to “keep your chin up, you’ll be fine, you always are. Just pull back on the laps.” But I know it’s not that simple. This disease doesn’t play by any rules except its own. I was so beaten last night, I even fantasized about dying in my sleep.

After a nightmare woke me early morning, I couldn’t face the day. Instead I started texting one of my sisters in pain. No sugarcoat, no stiff upper lip. Just my facts and fears, tears and all. While I was writing to Marla, another sister Nicole messaged me. I shared my horror with her and within seconds after I hit “send”, my phone rang.

Nicole’s voice was loving and firm. She reminded me of what to focus on – the ocean, flowers, everything beautiful. She reminded me of what I’ve come through and that my strength doesn’t waver. She reminded me that God is by my side, seeing me through and that I need to be still to let that light in. My sister in pain said she knew these things because she was there.

When Nicole described living in a bathroom and wheelchair right now, I knew she knew. She used the same words I use and voiced the same feelings. She quietly reminded me that there was no need to thank her because she already knew. That was so beautiful I cried.

Nicole finished by saying that we women in pain have two families. Our blood families who can’t get it – and our family of “heart sisters” who will always reach out a hand.

Soon word got around and my other sisters were checking in. These angels in my life can’t make my pain go away. Nor can I theirs. But we can always extend our non-judgemental, compassionate hearts to one another in a time of crisis.

This Valentine’s Day I don’t need chocolates, flowers or Cupid’s arrow. I need the grace of my heart sisters.

There are 16 comments for this article
  1. Susan at 12:24 am

    Cynthia, I sure hope you’re getting some relief.
    I can relate to having the pain win. I try so hard to not let it get me down. Living alone quite often is a struggle. I have no help from my family. They do not understand so i do not talk about my pain because they don’t believe you can feel so terrible that it actually controls your life. It’s frustrating because I try so hard to fight this and then I’m told I am not doing enough.
    Happy Valentine’s day.

  2. Cheryl Marie at 11:03 pm

    I wish I had some sisters like you . I have great friends and family but no one really understands it’s not just pain we deal with . Stress, worry, anxiety, depression ,judgement. I could go on but you all know that there is much more to chronic pain than the pain. Something those not in pain don’t understand . I read this site and others because you all get it. I also prayed last night please just take me. Just have had such a bad time lately. Sorry to hear your pain is a 10
    And I hope you get some relief soon .

  3. JackieA at 6:23 pm

    During the darkest days of pain, walking pre-dawn and watching the sun rise would help me. Soaking in the awe inspiring beauty and knowing that the sun will always rise, brings new hope.

    Taking pain meds, before my pain gets out of control is a lesson I have learned. You are not weak for taking pain meds, you are strong.

  4. Sue A. Side at 2:38 pm

    It must be wonderful to have a supportive family. I am happy for anyone that does. However so many chronic pain patients live a quiet life of continuous, happy mentality destroying pain. With maybe no one to just talk to less a physician. Pain cripples so many lives regardless of what instigated it. Once again I must say that for a government agency that deals with possible planet altering health situations on a daily basis, I can not get my emotions and common sense in line with exactly why any agency of the USA government would make millions of people suffer with stepping on our physicians in order to make them reduce our medications. If we are able to exercise and that would help with our pain the, that is a way to help reduce the daily pain. If we are wheelchair bound, home bound, and maybe to the point of even bedridden then where else is their to turn for some amount of periodic relief from the pain? If everyone was “treated” for their individual pain as it was and should be, then there would not be the feeling of patient abandonment that is happening all across America. Good people that have followed ALL of modern medicines methods of their health improvement and still are coming up short of ANY amount of quality of life, just knowing that someone cares is a great uplift but, I will NEVER understand how any authority of governing can lump sum several groups ( prescribed opioid medication users and illicit opioid, narcotic users) and reduce prescribed medication because too many prescriptions are being written. It is discriminating, patient abandonment, and sheer disregard for an individuals struggle with a huge very bad health condition affecting MILLIONS of Americans. I will never get past the bad treatment of good people in a bad situation that they never asked for. Being a chronic pain patient is a very personal health condition and should be treated on an individual basis. I wonder about the folks that have the surgically placed medication dispensing “pumps”. Are they being reduced on medication? yet the CDC states that the “guideline” is only a recommendation to our doctors to really be concerned about the prescribing of opioid medication and to make more aware of the characteristics of opioid medication to their patients. Many folks that were able to work a few months ago are applying for social security disability. I am not concerned about the severity or “how many” problems that an individual has, “pain wise”. If a person has no further options to stop or slow the continuous pain other than the use of opioid medication and have sought every means of treatment available with zero results then, the last option to life is opioid medication. It is nothing short of barbaric to leave people in the struggle for life that we are being subjected to. I have always realized that being treated for chronic pain was not my right but, an option. I am being reduced 80% in my daily medication. I know what you think but, I have taken 100 milligrams of opioid medication for the last 23 years. I was perfectly willing to attempt to reduce my medication when I was first told that this new “guideline” was coming. I really thought maybe I would be reduced possibly 20 milligrams per day and I would try my ultimate best to help with my part to reduce mortality with opioid medications but, I still don’t understand how reducing my personal medication by 80% daily will help the mortality rate in the USA in ANY POSSIBLE WAY. It is the “one shoe fits all” method of treating non cancer chronic pain patients. The CDC way to get better statistical information is a numbers achievement, not a humanity achievement..I am truly happy for close family but, for others the CDC “guideline” is roasting people over a slow fire.

  5. Mary Carrazza (Australia) at 2:28 pm

    I’m so sorry to hear how severe your pain is at this time Cynthia. It seems like circumstances have really worked against you. I have Fibromyalgia & rely heavily on the great support & information I receive from other Fibro Warriors in the Self Help Groups in Facebook (one is open to all and any Brother or Sister in Pain & the other is a closed group). Each group offers me a place to ask questions, discuss issues, to share thought & ideas and not only to receive kindness sympathy & support but to be able to offer it to others who are findi g the struggle too difficult at that moment. We all know chronic pain. We fight it, battle against it, sometimes givenin to it and occasionally enjoy our lives in spite of it. That there are ao many of us…all suffering but also giving caring supporting understanding… says much for the human spirit. I send you Gentle Hugs Cynthia and hope your body will soon relax a little so you can enjoy your laps again. A small joy worth fighting for. All the best

  6. Richel at 12:21 pm

    Hi,
    I read all the stories about those who are suffering. This breaks my heart. When I wrote messages on this site II never discussed my medical issues because before I became debilitated, I dedicated myself to the pursuit of working with many others who tried to find solutions for horrible health conditions. Now I can’t do anything for myself or others. I thought I had time to explain the issues from both sides to foster understanding about how we can communicate, improve quality of life, provide the knowledge of people’s experience, research, and what to do about how the bias in the mainstream hurts so badly. So, we can get back to the reason that many in healthcare who studied to help the needs others, not improve the spreadsheet. I’m to late, I have no sisters.

  7. Lynn at 11:21 am

    Jackie, I struggled with very painful “frozen shoulder” for 10 months and was going to have manipulation under anesthesia but pain was still increasing. Orthopedic surgeon gave me cortisone injection and OMG, pain cycle finally broke. Had such a great response to inj. that I don’t need surgery!! Everyone responds differently, put don’t write cortisone inj. off. It sure helped me. Best to you!

  8. Guinevere W. at 10:56 am

    Wow Cynthia what a beautiful letter! I am an RN and I know about CRPS very well. I am so sorry you are struggling with this auto immune disease. I am a chronic pain sufferer too, and I agree with you about having a heart family too.
    I had too be still too in order to let the light shine in. It has made a big difference in my life how I handle the bad days.

    Wishing you all the best of kindness and compassion.

  9. Anne at 10:47 am

    Good bless you Cynthia. I hope you feel my caring heart and warm hug. Yes, sisters in pain are the only ones who really know our struggle living with terrible chronic pain. Do all you can to baby yourself right now. All the soothing techniques that sometimes work. We are in there with you sweetheart. Try to smile when you can and as your other sister said, dream beautiful thoughts. Do all you can to relax your muscles. Sending love ❤ and caring thoughts.
    Anne
    68 years old
    FMS for 20 years

  10. Ada at 10:37 am

    Heart Sister Maureen,
    Your article touched my heart too. I’ve struggled with CRPS since 2012. It’s been an uphill battle all the way. But as you said, sometimes we just have to “be still” and trust God’s plan. Our pain and struggles has not taken Him by surprise and that’s why He implanted His strength in us to be able to face the pain and all it brings day by day. I believe God knows who can handle it, and so in a way, we are a chosen for this. He knows He can trust us with this lot in life, just like Job. Not everyone can handle the pain, disappointment, rejection, dreams shattered, a life of struggles to make it one more day…..because as sad as it is, so many give up and end it all.
    It takes a supernatural strength to not give up! That strength can only come from God and God alone!
    Thank you for sharing your struggles and victories and for having a heart for all that struggle with this horrible thing called pain.

  11. Maureen at 6:47 am

    Awww Cynthia! I immensely feel for you, deep in my ‘heart’.
    And I thank you for this writing since I too have been in a low, difficult, feeling very defeated and exhausting time with my pain, therefore I can totally relate to all that you wrote.
    As I awakened early this morn, hours before I was ready to wake and get up, it became war…and pain won. I screamed profanities from my pillow. The anger raged.
    I thought “I just CANNOT DO THIS ANOTHER DAY!”
    I live alone and its so hard to do it all myself.
    I have my Pain Support Group meeting this afternoon, which I lead.
    I was already negatively thinking that there is ‘no way’ that I can make it today.
    Pain then forced my weary head up off the pillow and I had a choice to let it beat me up physically and emotionally yet another day, or not. I was wickedly struggling at that moment.
    With tears rolling down my face…I took my med and then managed to get my coffee and slowly make my way to sit outside for distraction. I noticed how gloomy a day it is. It only added to my feelings.
    Regardless of my mood, I thanked God for this day that He gave me.
    I then watched a silly squirrel who loves my backyard, watching his antics around the yard brought a smile to my face :~) I smiled!! Now, I won!
    I then came to my computer and found your post…
    I also thank you for the reminder to ‘be still and let God’s light in’ in the midst of it.
    That alone be will very helpful to me today.
    Because of you…I will manage to get through this day, my heart sister~warrior.
    Keep strong, one minute at a time. You can do it.
    YOU FOREVER SHINE right through your pain!!
    Happy Valentines Day, feel the love,
    Maureen

  12. Rommy at 6:37 am

    Hi,
    I am 51 and in full DDD, toes, lower back neck and shoulders and my right elbow has bursitis from using a cane.
    My hips need replacement urgently, but my surgical date for
    Aug 17 feels miles away. Also conditions conditions I developed severe fibro. Daydreaming my death. I am with you and get it, gentle hugs💕

  13. Lisa Hess at 6:12 am

    Great Valentine’s story! Glad you have your “Sister’s” to lean on. My BFF of 40+ years has recently been going through what I have for 20 years and 2 weeks ago I received a message from her saying that she can “now appreciate” what I live with every day because she now does. I never complain of my pain to anyone, but if they ask “how are you feeling?” I’m not going to lie as so many tell me to do because then it is not fair to me that I can’t share my pain. Thanks for writing pain sister and hope you get back in the water again soon.

  14. JoDawn at 5:19 am

    ((((((((((Gentle Hugs))))))))))
    You are loved, and always will be!!!

  15. Jackie at 4:09 am

    Thank you for giving me hope that someone will understand this horrible 24/7 pain.
    My own sister, who would’ve been such a support, died, as did my mom who was incredibly sympathetic and understanding. I have had bone pain in both feet off and on since age 4 due to Kohler’s disease (osteochondrosis juvenile form). Now i have Freiberg’s disease in both feet (osteochondrosis of 2nd and 3rd metatarsal), and CRPS type 2, both feet after a bad ankle sprain in July 2015. I developed adhesive capsulitis in one shoulder after an injury, and the other shoulder is now affected. The only treatment I was offered by ortho was steroid shots. I have lost some friends, one was angry I wouldn’t get steroid shits, but the literature shows no clinical improvement from steroid shots.
    Celebrex does nothing for the pains, and my PCP is clueless, but has tried to help with very low dose hydrocodone. I am supposed to get by on 5 mg hydrocodone per day, but during a flare i need it every 4 hours. I dont take the pain med unless it is excruciating.
    Would like to find out more about Heart Sisters!