BY: Rachel DesRosier
This is a long one. Thank you for figuring out my chronic pain. Thank you for believing me, listening, problem-solving, remembering me when I came back for my next visit; thank you for everything. Please feel free to share this with your staff as well – I am hoping some parts might be funny or amusing. At the very least, I hope they feel appreciated – Every phone call they answer, a patient is hopefully closer to getting a diagnosis, getting some relief. I am thankful for them, too. Please, whenever you have a hard day, find some humor in it and please also think of my story.
Backstory: I was a chubby kid. But by 2009, I was an avid weightlifter and calorie counter. I counted the calories in lettuce! Maybe I had anorexia athletica or something, but nobody would have diagnosed me back then – the adults in my life were just happy I wasn’t another chubby teen, so they did not ask questions. I was really starving myself; my reward for working out was a handful of food, and there were a lot of foods that I considered to be “bad,” and I remember going on a kayak trip with my family and flipping out because the kayak rental place didn’t have bottled water (all the beverages had sugar in them). I probably really needed that sugar! Please give some love to your chubby patients; being fat is not the worst thing a person can be. I was still seeing gains in the weightroom, so I continued my low-calorie diet. I weighed 98 lbs and bench pressed 125 lbs, and leg pressed 300 lbs. I got used to feeling hungry. In March 2009, I “craved” heat more than food; I would sit in a car on a hot day to feel better because 90F felt cold. I had a fever. I couldn’t keep any food down. I was diagnosed with mononucleosis. My leg muscles would involuntarily twitch/jump, and my doctor said it was dehydration. For two weeks, I survived on broth and a few soft foods. At that point, I became so weak I could not walk, could not lift my arms to feed myself, so my parents took me to Manatee Memorial Hospital. My whole body hurt; I was given morphine and had an allergic reaction. I was diagnosed with pneumonia in both lungs, pancreatitis (elevated enzymes, later diagnosed as chronic), and gallbladder disease (no gallstones, just inflamed with 6% ejection fraction, later taken out).
When I was released from the hospital, I was eager to get back into exercise. I forced myself to run. But my body tried to stop me. I had a burning pain from my hips downward whenever I used my legs. Resting gave me some relief. Maybe my body was trying to keep me from exercising too much. For a year, I continued to weight lift and run despite the pain. Then I stopped; I could not take the pain anymore. I was not able to eat or sleep because of the pain, and exercising made the pain worse. I joined online anorexia and body dysmorphia support groups, gained weight, and stopped calorie counting. Doctors said that maybe the pain was a weird nutritional deficiency symptom, my iron was low, and I’d take supplements, and eventually, my bloodwork got better, but the pain remained. I saw neurologists, rheumatologists, sports medicine doctors, pain medicine doctors, GI, GYN, Cardiologists, physical therapists, acupuncturists, etc. Some doctors were good; they believed me and felt for me. Some doctors were awful. They insinuated that I was attention seeking, or drug seeking, or a hypochondriac, Munchausen. I had CT scans, PET scans, EKG, EMG, autoimmune marker labwork, veins ablated in my legs, ovarian cyst removed, etc.
Three years into my chronic pain, I was on the verge of losing my college scholarship. I was struggling to walk to classes and was always tardy. My doctor helped me keep my scholarship. Still no answers – we decided it was time to go to Mayo Clinic. They were awful. Still no answers. At this point, I knew I would have the pain for the rest of my life. I was surviving – I would have regular breakdowns, but I did not give up. I still went to school, still worked. I tried to will the pain away, think it away, meditate, believe it away. I went to a psychologist – She said “Well if you have a job and school and everything, how would your life be different if you didn’t have the pain anyway? Have you tried listening to music to distract yourself from the pain?” I started to wonder if death would be a good thing. All this suffering, but not just my own – my parents were so worried about me and they had POURED money into figuring out what was wrong with me. We tried all the wives’ tales, all the quack medicine, all the yoga poses, all the specialists, and lots of medications, SSRIs and anticonvulsants with horrible side effects. No doctor ever wanted to give me a prescription pain reliever, but ibuprofen did not touch the pain so maybe it would not have helped anyway. I felt like a burden to the people I loved and wondered what the best way would be to un-alive myself. Death was not scary anymore; it was pain relief.
2012 was a crazy year. Pneumonia again. I did a few things I shouldn’t have; I hated myself. I gave myself an ultimatum – I was either going to find something for my pain so my loved ones did not have to suffer with me so much, or I was going to give myself “the pain relief.” This was when I started going to group therapy and invisible illness groups, chronic pain groups, and being around “zebra patients.” I listened for supplements, new treatments, medical studies. I was reading medical journals, I was pre-med in college and applied to PA school but they didn’t like my take on how Anthropology is important in the health field (they did not like soft sciences and my degree was Anthropology). Basically, if crack cocaine relieved my pain, I was going to become a crack addict. I found Kratom. Controversial, but it took the edge off. In late 2012, I started dating a wonderful man who would become my husband. He once tasted kratom and threw up. It is like eating mud. But Kratom saved my life! From 2012-2023, it was how I kept alive.
Today is like a miracle. I did not think I would live to see the day where I would get more relief than what Kratom gives me. Dr A, I know I told you that rest relieves my pain, but now that I have real pain relief, I can confirm that I was actually in pain constantly, just different levels of pain. Previous doctors made me feel like I should downplay my pain so I don’t seem like a hypochondriac. As of March 2024, I will have had my chronic pain for 15 years. It feels so nice to feel more normal. On my low-pain days, it’s almost like I’m a normal person! I’m still feeling kind of shocked, like I must be dreaming/hallucinating. I know I’m not cured, but this is still huge. Thank you for figuring this out for me. Thank you for giving me a new life. I should count the ways:
Waking up – Normally, even if I’ve slept well, I feel pain as soon as my feet hit the ground. Not anymore!
Breathing – You know how your body wants to curl up into the fetal position when you’re in pain? Try resisting that feeling for 15 years. I once went to a massage therapist who boasted she helped chronic pain sufferers, and she kept yelling at me to take deeper breaths – “Slow your breathing and breathe deeper!”. I couldn’t; I was in so much pain. I am feeling much better now! It feels easier to breathe.
Cold feet – Literally. For 15 years, my thighs/legs/feet have felt like they were on fire. I forgot what it feels like to have cold feet. I wear socks and slippers at home now.
Walking – I can take a walk in my neighborhood and not feel like there’s a nagging burning feeling in half of my body the whole time. You know that feeling when you take your shoes off at the end of a long day, and you think, “Wow, it feels so good to take these off”? Multiply it by 100, and that’s me taking a short walk.
Sex – No details spared, you guys, no details spared. For years, I had sex with my husband and was in pain. Much better now!
Pooping – What did I say about no details spared? Sorry, not sorry. Kratom gave me constipation. Saving money by not buying kratom and magnesium supplements. Pooping much better now 🙂
Loved ones – My dad cried when I told him about my diagnosis and treatment plan. My mom died of cancer years ago (they think it started in her gallbladder and spread through her digestive system, maybe we have crappy gallbladders in my family). I wish my mom could see this. She always knew how bad my pain was no matter how good of an actor I was. On my wedding day, five minutes into it, I was in pain standing. Nobody knew, but she did. She brought me champagne and a chair. She was a scientist, worked in a laboratory and when she had kids she became a science teacher. But she would still use the word “magic” and used it whenever something amusing or pretty happened, no matter the logical explanation. A rainbow has a reason for its existence, but we enjoy it, therefore it is still “magical” or a “miracle”! I could be dead right now, but a miracle happened. I thought I would be in pain for the rest of my life, but a miracle happened. Thank you.
Again, please feel free to share my story. I hope you are having a good day, and if not, hopefully this letter adds meaningfulness to the day. Thank you for all that you do. Patients can be annoying. Patients be crazy. Please forgive us. Lol.
Sincerely,
Rachel DesRosier
With the NMDA receptors that don’t do right
ABOUT THE AUTHOR:
Rachel is an anthropologist (bachelor’s degree) and lives in Bradenton FL. Through her day job, she enjoys outreach, networking, marketing, and community events. She also owns her own company, Native Plant Play LLC, which promotes native gardening while celebrating a sense of humor. She is also sending letters to all her past doctors to share her diagnosis, treatment, and a little love (whether that means a talking-to or a thank-you). She plans to share some of her letters in a book that will be published called “Love Letters to My Doctors.” If you would like to be notified when it is available to read, please subscribe to her Native Plant Play e-newsletter at http://eepurl.com/iFjH26.