Tattoos and How They Relate to Chronic Pain

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20181204_210738I never imaged myself as someone who would ever a tattoo. I had nothing against tattoos; I didn’t see them as something I would do. The most significant reason being I use to be a total wimp about pain. It’s why my ears are only pierced once. It was fashionable to have your ears double pierced when I was a teenager, but I never could bring myself to do it. I was too afraid of the pain piercing would cause. If it hadn’t been for the fact that my ears were pierced when I was an infant, I probably wouldn’t have pierced ears. That wimpiness about pain is why I figured I would never have a tattoo done, no matter how gorgeous expression of individuality they were.

The joke was on me. It turns out; I had to get over my wimpiness where pain was concerned. I’ve come a long way since and I am a far cry from the girl, who use to freak out of the pain of getting a shot or blood drawn. Pain is now my constant companion. It’s been my bosom buddy for going on almost a decade. I have so many pain issues when I go into the doctor’s office; I have to break down my pain score by body part. “Well ma’am, my nerve pain is at eight on the pain scale today. However, my lower back pain is doing pretty well. It’s at a five.” I have learned how to live and thrive despite the pain. I take medication daily and utilize a whole host of therapies to help manage my chronic pain.

Dr. M, my beloved pain management doctor, who gave me my life back use to tell me that I had one of the most pragmatic outlooks concerning pain that he had ever come across in a patient. I accept that I will never be 100% pain-free. I recognize that no doctor is going to be able to cure me. I don’t want a cure or a miracle. All I want is for my pain to be manageable, to be bearable and still allow me to be a functioning mom and wife. I want to still be me.

I had lost myself in the two years between William’s birth and meeting Doc M.  My pain had gotten so bad that I didn’t feel like a functioning person. I didn’t feel like I could be a good mom or wife. I didn’t feel like I could keep going. I had lost hope. Then in August of 2016, I meet Doc M for the first time. He changed my life. He gave me my life back in May of 2017 when he put me on Belbuca. Belbuca was the miracle I needed. My pain is better managed than ever before. I spend a great deal of my time sitting at a three or four on the pain scale. For someone, who spent many years living at a seven or higher, that is amazing.

In September for my thirty-first birthday, I decided to get my first (and only) tattoo. I wanted a reminder that I was more than just my pain. I wanted something to remind me on my worst pain days that the choices which played a role in my health failing were worth it.  So I had my first tattoo done in gorgeous script on my left forearm. It reads, “Even after the pain & heartbreak, I’d make the same choice.

20181207_211054About halfway through having the tattoo done, I knew I had been wrong. It wasn’t going to be my only tattoo. I am not sure if I have adequate words to express the headiness that comes with having a tattoo done. It wasn’t overly painful (though I might not be the best judge of that.) and the endorphin high is spectacular. However, it was more than just that.  Having my tattoo done was therapeutic.

One could ask, “Why would I want to do something that was even remotely painful given that I live with constant pain.” But that is just it. I live in constant pain which I have no control over. Every night when I go to bed, I know there is a chance I will wake up in the morning in a flare. My pain will have climbed throughout the night and not respond well to my medication in the morning. I never know when I will be hit with a flare. Yes to a certain extent I can predict when one will come on, but I can’t predict how severe or how long it will last. Not only is there the uncertainty concerning flare-ups, but there is also always the fear I will wake up one day and not respond to my mediation; the chance that my body will grow tolerant and they will stop working. It’s happened before and likely will happen again.

But a tattoo? That is a pain I have total control over. If the discomfort (which is how I would describe the “pain”) gets to be too much, then I tell my artist, “Hey, I need a break.” and we take a break. I control how much it hurts by choosing the placement of the tattoo. I decide how long I sit for a tattoo. I control it all, and for someone, who doesn’t have any real control over her chronic pain, that is a powerful sense of ownership. Add in the endorphin high which comes with getting a tattoo done and it’s a surreal experience. I have spoken to several friends, who also suffer from chronic pain and have tattoos. They have all said the same thing that getting a tattoo is therapeutic for them.

I went to a get tattoo which would remind I was more than my pain. I came out having experienced control over pain for the first time. I learned something about myself sitting in that tattoo parlor. I learned of another way to look at my pain. I found an experience which was therapeutic. It allowed me to wrestle my pain in an entirely new manner. For the few hours, I was sitting for that tattoo, I pushed my chronic pain out of my mind and dealt with a pain I could control. The explanation seems so inadequate, but I lack the words to give justice to the experience. Despite the lack of words, I can say that getting a tattoo changed how I relate to my chronic pain at a fundamental level.

Earlier this week, I went in and had two new tattoos done. I had a memorial tattoo for my daddy put on my upper arm. Then behind my left ear, I had the Harry Potter chapter stars done in Ravenclaw blue. I don’t know what my next tattoo will be or when it will be done. However, I do know that there will most definitely be more tattoos in my future because as strange as it may sound there is something oddly therapeutic and satisfying about having control over pain even if it is just a temporary control.


My blessings

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If you described my life to a stranger, they would think it was awful. After all, I have lived with severe chronic pain for almost ten years. Since my second pregnancy, I have battled numerous health problems. I have eight separate diagnoses. (Scoliosis, Myofascial Pain Syndrome, Rheumatoid Arthritis, Neuropathy, Sacroiliitis, Sacroiliac joint dysfunction, Ankylosing Spondylitis, and beginning stages of Thyroid Disease). I have moderate hearing loss in both of my ears. Plus two issues, which they are still doing testing for. I have had two major surgeries- a spinal fusion (T2-L4) in 2012 and a partial hysterectomy in 2015. I am chronically ill and will be for the rest of my life. I wake up every day in some degree of pain. I can’t remember what it is like not to hurt. However, I have accepted this, and I will be the first to tell you that I have a fantastic life. I thought with November ending I would take the time to count my blessings.

1. My HUSBAND! I count myself lucky every day for my husband. He and I celebrated eleven years of marriage this past July. I wasn’t ill when we meet. I was a healthy, lively, active nineteen-year-old, who could go hiking and dancing. However, my health wasn’t long-lived, I have been sick for most of our marriage. My health issues add stress, but at the same time, I believe we are stronger for them. He is my rock; I know he will always be in my corner. He is my best friend and biggest supporter. He always has my back. When I feel like giving up, he’s there urging me to keep up the good fight. He is one of the main reasons that I can get up each day and keep fighting, no matter how bleak things look.

2. My Boys. They are the other reasons; I keep going. My boys are the greatest gift God has given me. Those four crazies give me a reason to keep going. They are my reason for living. They are my joy.  They always amaze me with their empathy and understanding. I have never hidden my health issues from them, frankly because it would be stupid to try. I would fail miserably if I tried. They are always glad to help me and take care of me when I am feeling bad.

3. Doctor M. When I walked into Doc M’s office for the first time in August 2016, I had given up. He was the third pain management specialist; I had seen since we moved in April 2016. The first two have been awful visits that left me in tears. I didn’t think he would be any better. I was on a large number of medications which weren’t working. When it came to my pain issues, my baseline was a seven on the scale. I would end the day at an 8 or 9, hardly able to move because of how much pain I was in. I was miserable. My family was unhappy. I felt like I was failing them. I was in and out of the ER because of uncontrollable pain. Doc M spent almost three hours with me on that first visit. He heard me out, really listening to what my problems were. When I was done, he looked at me and said, “That’s a load of bullshit. There is no reason your pain should be so poorly controlled. We are going to get it under control. You and I will work together until we find something that works.” He kept his word. It took us ten months to find the right treatment protocol, but we did. Since I started that protocol in May 2017, I have felt better than I have in years. His plan has kept my baseline at a four on the pain scale. It has been over a year since I went into the ER for uncontrollable pain. I now spend around 85% of my time at a three/four on the pain scale. Doc M gave me my life back. He gave my kids back their mom and my husband back his wife. I will forever be grateful to him.

4. My Tribe. I have lost friends, who couldn’t understand or cope with my medical issues. However, I have a core group of friends, who have stayed true through it all. I am blessed with some of the best friends a woman could ask for. They never complain if I have to cancel our plans last minute because I woke up hurting too sick to go out. They listen to me whine on the bad days. They are also the first to celebrate the good days with me. Over the years, they have watched the boys while I went to doctors. They have driven to my house in the wee hours of the morning to watch the kids while Mark took me to the ER. They have taken me to the ER. They have brought me meals and helped clean my house. I am blessed to call these women my friends and sisters. My life wouldn’t be nearly as great without them.  There are two ladies in my tribe, who deserve individual shout-outs. They make up blessings 5 and 6.

5. The first is Annie, the woman I trust to raise my children if anything should ever happen to  Mark and I. Our friendship started over a bowl of ice-cream, the night before my wedding. In 2012, she put her life on hold for almost six weeks and flew out to help with the boys while I recovered from the spinal fusion. I don’t know what we would have done without her.

6. The second shout-out goes to Katie, my soul-sister. I met Katie after our last move. We were introduced through a church playgroup. Afterward, I went home and looked her up on social media. She had the most fantastic profile picture, and I decided I had to become friends with her. It didn’t take long for her and me to figure out we were a match made in friendship heaven. We’re two peas in a pod, clearly split up at birth. It would take to long to count the abundance of blessings Katie brings to my life, but her friendship is essential to my well-being.

7.  I have excellent health insurance, which covers my multitude of specialist, my physical therapy, and all of my medications. Unlike, many people with chronic illnesses, I don’t have to worry about being able to afford my medical care. That makes me blessed beyond measure. This single fact means I don’t ever have to worry about being able to see my doctors when I need to. It means I don’t have to worry if I can afford my medication each month.

8. Financial security. My husband has a good job, which provides a good life for us. We have a roof over our head, plenty of food in the fridge. (Though it’s pretty bare at the moment, I need to break down and go grocery shopping!) I am blessed I can grocery shopping without having to worry about money. I know I can afford to feed my family healthy and also splurge on special occasions like birthdays. I can clothe my family. All of our bills are paid on time.  For someone, who grew up without financial security, it means the world to have it.

9. Being able to homeschool my boys. I have been homeschooling my boys, since Paul started kindergarten, six years ago. Several of my boys have special educational needs between learning disabilities and speech delays. I count myself very lucky that I can homeschool them. They thrive in a way they wouldn’t be able to in the public school system. I get to stay home, supervising their education myself. I can make sure they are getting the best education they possibly can.

10. My doctors. Over the past year, I have assembled an amazing team of specialist doctors. They are working together as a team to manage all of my health issues. For the first time, every single one of my health issues is being handled well. The doctors realize that all of my health issues are interconnected. They can’t isolate them. They have to look at the whole picture.

The above list is my top ten blessings. I have many more blessings, but these ten are the most important ones. My life is filled with a multitude of doctor appointments and treatments. I may hurt every single day of my life. However, I am blessed beyond measure. I have an incredible life despite my challenges, one that I wouldn’t give up for anything, not even if giving it up meant being perfectly healthy.

A Long Overdue Update on my Health

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I am happy to give a long overdue update on my health. I am currently feeling better than I have in a long time; however, I am still having some symptoms that need to be managed. As I mentioned in the last blog post, I have been working with an endocrinologist and an internal medicine doctor. They have both been amazing. For the first time in forever, I have a team of doctors, who are looking at my health as a whole and that has lead us to some answers. Some of the answers are good and some of them are bad.

Starting with the good news:

-The positive Lupus blood test turned out to be a false positive caused by my Rheumatoid Arthritis.

-I am no longer suffering from severe chronic tachycardia (elevated heart rate). One of my medications turned out to be the culprit. My doctors and I worked together to wean me off of it. As soon as I came off the medication entirely, the tachycardia went away. I have been tachycardia free for four whole months!

-The treatment plan, my doctors and I have put together, is managing my pain well. My baseline is a four on the pain scale. After years of living with a benchmark of seven, I never believed we would have my pain so well managed.

Now on to the bad news.

-The testing came back on my thyroid, and I am in the beginning stages of either Hashimoto’s Thyroiditis or Graves disease. They are both autoimmune diseases which affect the thyroid. We will not know which one I have until it progresses further. In the beginning, they have the same appearance on ultrasounds.

-My body is still struggling to process and store vitamins and minerals correctly. This is especially true when it comes to vitamin D, vitamin B-12, and Iron. My doctor has put me on a vitamin D and B-12 supplements. While he would like me on an iron supplement, I have a history of not tolerating them well. So, we are holding off at this time. If my iron levels fall much further, we will have no choice but to supplement, regardless of how sick the iron makes me.

-My cholesterol levels are mildly elevated, which is a new symptom that has presented in the last eight weeks.

-I have developed a sun sensitivity.

My immune system is going haywire. My doctor believes that I am suffering from polypharmacy. Essentially, all of the medications that I am taking to treatment (aka be a functioning person) my pain conditions are wreaking havoc on my immune system. We have reduced my medication load as much as possible. Having done that, we are trying to treat my symptoms using a combination of diet and lifestyle changes. Hopefully, by making these changes, we will see improvement in the symptoms and possibly reverse some of the damage to my immune system.

Regardless, of what new curve balls life throws at us, we continue onward. We keep trucking along and making the best of everything. I refused to allow my pain to beat me and I refuse to let these autoimmune issues beat me. My family needs me, and I refuse to fail them.

I am Healthy or I am?

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Photo one was taken Saturday afternoon at the zoo. I was feeling great and enjoying myself. Photo two was taken four hours after the first. I felt terrible and spent the rest of Saturday and almost all of Sunday in bed recovering.

Photo one was taken Saturday afternoon at the zoo. I was feeling great and enjoying myself. Photo two was taken four hours after the first. I felt terrible and spent the rest of Saturday and almost all of Sunday in bed recovering.

I am feeling better than I have, well if I am honest, in years. Not since I was pregnant with Antonio, our third son, who turned six earlier this year. I felt amazing when pregnant with him. Then he was born, and the pain came back with a vengeance. Hurting and feeling terrible was my standard. However, I kept trudging onward because there was nothing else to do. Over the last few months, I have established an excellent team of doctors- an endocrinologist, an internal medicine doctor, a pain management specialist, and a rheumatologist. Yup, I see four different doctors frequently. Plus, I have a cardiologist and a spinal surgeon who I see infrequently. This team of doctors, I have assembled over the last few months have finally started looking at the whole picture that is my health, and it is finally starting to pay off.

Numerous friends and family members have mentioned that I both sound and look like I am feeling better. My childhood best friend told me the last time we chatted that I sounded like my old self- the pre-sick me. My house is nice and clean. The boys and I are doing more activities. As a family, we are taking mini-road trips and going on outings. I am sleeping better and waking up in the morning is more pleasant. I am not suffering from as much brain-fog. I have more energy and less fatigue. Compared to how I was 8 weeks ago, I am healthy. However, here’s a secret…I am not cured. I am not really healthy. I am still sick. I still suffer from immense pain daily. I still have a long litany of symptoms. I still have a long list of diagnosis: Scoliosis, Arthrodesis (term for spinal fusion, which is indeed listed in my records as a medical condition) Ankylosing Spondylitis,Sacroiliitis, Sacroiliac Joint Dysfunction, Rheumatoid Arthritis, Trochanteric Bursitis, Myofascial Pain Syndrome, pain from nerve damage, unknown thyroid issue (still waiting on test), and chronic vitamin deficiency (still looking for the cause of this). I am currently restricted by my doctors to traveling no further than six hours from home. This really sucks, since I am missing out on a family wedding and a road trip to see friends. I am a walking train wreck. Yes, I am feeling better and it’s because I am blessed to currently be under the care of a great team of doctors, who are using medication, physical therapy, nutrition, and alternative medicine to manage my care. They have knocked several of my conditions back into remission, and the other ones are currently being well managed.

I am taking full advantage of this and living life to the fullest. However, even when I am feeling well, I still have to be acutely aware of what I am doing. I am never going to go bungee jumping or skydiving. I will never be able to hike the Colorado trail. I still have to be aware of what I am doing, because there aren’t any guarantees. I could wake up tomorrow feeling like shit- with all my conditions going haywire and out of control. I spent Saturday and Sunday laid up because I had a flare come up out of nowhere. I hadn’t done anything particularly strenuous either to cause it. It’s just the nature of having chronic illnesses, even ones that are being managed well. Being managed well can also change at the drop of a hat. Medicine can stop working for any number of reasons, or a new symptom can crop up. However, I nor any chronic illness/pain warriors can live in fear of flare-ups or conditions coming out of remission. We must make the best of things, both when we feel good and when we feel terrible.

I am not Superwoman…

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I don’t remember what normal feels like.  Nine years ago my health started to deteriorate. I began suffering severe pain while  I was pregnant with my second son, Thomas and it never went away.  I have seen countless doctors. I have had two major surgeries. The first a spinal fusion which fused my spine from T2-L4 to stabilize it and mitigate further damage from scoliosis. The second was an elective hysterectomy because I was tired of being bedridden for a week of each month in agonizing pain. That was one pain issue I could cure, unlike the vast majority of my pain issues. I’ve spent hundreds of hours in physical therapy, massage therapy, and dry needling. There have been numerous steroid injections, and I am the proud owner of my own pharmacy. Heating pads and ice packs are close personal friends. I’ve chased natural methods like oils, supplements, diet, and exercise. Some of these treatments have helped. Some of them have not. However, over the last nine years, I’ve assembled an extensive bag of parlor tricks to manage my pain, to be a functioning mother, wife, and friend; so I can be something beyond my pain. In the last nine years, I have learned how to live and thrive despite my medical issues. I have made sure that my medical problems don’t define me, while at the same time being open about the struggles of living with chronic pain to help raise awareness.

One of the most common things I hear is, “I don’t know how you do it.” Followed up by, “You are superwomen.” I am not superwoman. There is nothing special about me. It isn’t some fantastic secret power that allows me to do what I do. There are thousands and thousands of women and men, just like me- living with chronic pain, disabilities, and chronic illnesses that are thriving just like I am. I do what any mother would do. I strive to give my children the best life I can. I want them to have a happy childhood. I want them to know that they are loved. I don’t want them to look back on their childhood and think, our childhood sucked. Mom was always unhappy, miserable, and sick. I refuse to let my illness destroy their youth, and so I fight back against it with every fiber of my being. That isn’t being superwoman; it’s a mother.

People with disabilities, chronic pain, or chronic illness don’t want to be superheroes. Sure, it can be flattering when someone says, “Man, I can’t imagine living with your condition, you must have superpowers.” However, the reality is that most of us would love to be normal again. We would love not to hurt. We would love not to be sick all the time. We would love not to have to count spoons of energy. We would love not to have to weigh every choice by the consequences it would have on our health and be able to go with the flow living without worries. However, until cures are found for us, we will continue to fight against our diseases and pain. We will fight to be more than our illness/pain. We will fight to be the best parent, spouse, and friend we can be. We aren’t superheroes. We are just regular people, who have different challenges then you do. We want to make the best life for ourselves and our families that we possibly can.