HTW: mentions of body image and weight
What is it like being diagnosed with a chronic illness at a young? It's awful being diagnosed at any age, but terrible being young! It has really robbed me of a lot. My story begins in February of 2007. That was my freshman year of high school, but I am first going to talk prior to it. The summer of 2006 I just started lifting weights and got serious about working for football. I've always had a solid build and played sports. I was able to put 15 lbs of muscle on in three months, and I had a great season. Little did I know something terrible was brewing just a few months lster. It all started when I was having repeated trips to the bathroom. I did not think anything of it at first. Then I started to develop sharp stabbing pains in my stomach! My weight was started to drop. I didn't really tell anyone though. Eventually I started bleeding heavily. My mom saw the blood in the bathroom! Enough to look like a crime scene, so she made an appointment with my pediatrician at the time. He wasn't too concerned at first about the weight loss because according to him my weight was correct for my height. Eventually people started to comment how pale I was looking. She took me back, and she told him that he needed to labs. I was anemic. He then referred me to a gastroenterologist. She did a whole workup of tests, including a colonoscopy. We got the diagnosis of ulcerative colitis. My mom suspected it. It hit me like a freight train. I never saw it coming. I was pissed off, and I was scared. I did feel like a normal teenager. I thought I had my life figured out after high school, but boy, was I wrong. I wanted to go into the military. Two years later my GI tested for a liver disease called Primary Sclerosing Cholangitis, but I'll talk more about that another time. They say I'll more than likely need a liver transplant, and that concerns me. I did have a few good years of health after that though, as I was able to play football and workout! Fast forward to 2015, and I was slapped with another diagnois called Gastropareisis. It has severely impacted my ability to eat normally and stay hydrated. Everyday I deal with nausea and vomiting. I am thankful I can still eat though. Being ill has changed me so much! John Lennon said, "Life is happening when we're busy making plans". That's okay though because we are suvivors, and we have to learn to adaot with our situations, and it's certainly not easy being young and ill. Many of you can sadly related.
-Ross Something that I pride myself on being able to do is pull off the near constant smile, the always laughing, and always trying to find the humor in things; Even more so with multiple chronic illnesses. About two weeks ago I met with my electrophysiologist. He is such a wonderful physician and listens to me and I enjoy our visits. We were doing a follow up with my medicine to see how we are doing with the heart rate control. Not great, the extended release is wearing off by mid afternoon and my insurance company hasn’t approved the new medicine yet. He told me he doesn’t get angry a lot, but when a patient needs something and has failed everything else and they are continuing to give him the run around he gets upset and angry. He was visibly upset with this and he apologized. I just shrugged it off. I know how insurances are. Being a nurse you get to advocate for your patients and sometimes that means making that dreaded phone call to the insurance company. I know the process, I’ve done the process, and I’ve waited with the patient eagerly checking email after email and letter after letter. He told me that he couldn’t believe that I could still be so happy, still smiling and laughing and so understanding with everything I’m going through. I told him I don’t have a choice. It’s not anyone’s fault that I’m sick. Being mad or upset isn’t going to change the fact that there isn’t a cure for any of my multiple conditions. I can’t place blame on anyone or anything. But let me let y’all in on a little secret: I’m absolutely angry, frustrated, wanting to cry with every breath, wanting to shut everyone and everything out. I can’t help it. I try so hard not to let it show, but as anyone with a chronic illness knows sometimes it just gets to you. You have to have your pity party, eat ice cream, watch your favorite movies, cry in the shower, and scream into a pillow. You have to let it out. You just have to. It’s one of my secrets to be able to control myself the way I do with the smiling and humor. I used to just pour myself into work and let it out that way, but I haven’t been able to work since July of 2017. It just isn’t an option anymore. I’ve had to just learn to take what I’m feeling, let myself have a little pity party, and move on past it. Even though the life we live may not have the best quality, we still have to make the most of it. Life is too short to stay angry all the time and try to find someone or something to blame. So take time for your pity parties. They are okay to have! We are warriors and we have to do what warriors do. Keep fighting.
-By Savannah by Savannah Ellis Nurses week is May 6 through May 12 this year. It’s a time when nurses are often praise for their work, showing appreciation, and gratitude. Nurses are an amazing classification of humans. We are our own species!
From the time I was young, I can remember wanting so badly to become a nurse to help others because I had been helped so many times. I stayed sick, but I always had wonderful nurses and staff to take care of me! My ninth grade year of high school was kind of my point to where I just realized “Yes! This is the career for me.” I was the mom friend of our group (and I still am!). Taking care of others always put a joy in my heart that left me beaming for days. From seeing a baby smile at me, from helping a toddler overcome their fear of a needle because I was the one to give them a shot, to my elderly patients that always thanked me for taking the time to listen to them because most people don’t anymore. In 2015 though my life flipped completely. In 2014 I started having GI testing because we were certain it was my gallbladder. Lots of pain, no answers from tests. My CRP and SED rate (inflammatory markers) were elevated in February 2015. They are still elevated. After symptoms continuing to worsen (dizziness, palpitations, headaches, blacking out, numbness, tingling), I finally went to my primary care and they sent me to neurology. I was diagnosed with POTS after a tilt table test. As a nurse, you learn that things can go wrong with the body as a whole, each section or system, even down to the cell itself. I did not learn about this in nursing school. I had never heard of it! My neurologist had to write down the word “dysautonomia” for me. I googled, I researched, I took my medicines. I continued working as a full time nurse until December 2015. I started having seizures at work. I remember coming to and having my coworkers around me and the paramedics coming in to check me out. I thought to myself this isn’t supposed to happen. I’m supposed to be the one taking care of everyone else! I wound up in the ICU so they could get the seizures to stop. There was an immense feeling of guilt. These people around me are having to take care of me.. AGAIN! This wasn’t supposed to happen! I wound up starting a new job in January 2016 with a wonderful practice. I was diagnosed with EDS in April of 2016. I remember thinking okay, I can still work, I can still do this. I’m not going to let anything else happen so someone else has to take care of me. Unfortunately as we all know with chronic illnesses, that is not the case. I continued to decline. I was having to miss more work for more doctors visits, passing out, days where I couldn’t move due to the giant cloud of pain that enveloped me. I had to stop working July 2017. It’s been almost a year. This week is nurses week. A time where nurses are appreciated and praised for doing what they do. I feel so guilty for having to leave the profession that I love because my body ultimately said stop. I’ve gone over this so many times through my head. Guilt. Burning compassion for others that lingers. More guilt. I’ve had to tell myself to stop, and that I can’t take care of others if I’m not able to take care of myself. I have to tell myself that I’m still a nurse, even though I’m not physically able to work anymore. I try not to let the guilt of leaving behind my patients and coworkers get to me, but there are days when you can’t help but let it come out. Take a moment this week to thank your nurses that are by your side. Tell them that they are appreciated. Thank them for what they do and for listening to you when you need to talk. I can tell you it will make their day shine bright. I know it did mine. Trigeminal Neuralgia is a thief. Out of all of the diseases I battle, Trigeminal Neuralgia is the biggest jerk I've ever met because it makes it hard to smile and has forever changed my dimpley, sweet smile.
Beneath the surface: My face is stiff from Botox treatments, swollen from steroids and it's just not what it used to be because TN sucks. 3 years ago I had a radiation surgery that "fried" my Trigeminal Nerve and I'm pretty sure that also altered my appearance. It feels different to smile... forced, uncomfortable and unnatural. Sometimes people don't recognize me and it's embarrassing. Sometimes people make comments like "Your so much prettier when you smile" and it hurts. Although the treatments for this disease have changed my appearance I'm super thankful because on most days I'm in a lot less pain. But tonight things are very bad and I don't feel like myself: in fact I feel pretty "Dark and twisty". You see I've been trying to kick this pain in the left side of my face for the past 6 hours. I'm exhausted but it feels like my face and jaw are being electrocuted so I'm wide awake. I've tried multiple medications including muscle relaxers, anti inflammatories and opiates. I've tried essential oils, pain salves, CBD, ice, heat and the list goes on. I've tried to distract myself with art projects, making care packages for others, watching movies, etc and nothing has helped... its 3 am and I'm starting to panic. What if I can't sleep at all? What if the pain gets worse and I need to go to the ER? Who will take me? Will the Dr be compassionate or asshole? Currently I can barely open my jaw, I'm unable to brush my teeth, eat/ drink and I'm insanely nauseous from the pain. I'm tired. I want to sleep. My face hurts. I cannot cry because that will make it worse but I'm starting to panic... This is a lot for anyone to stress about at 3 am and although it's not "fun" it's become my job because I'm 30 and stuck on permanent disability. I just really miss my cute face. I might not smile the same as I did at 16 but these disease has made me resilient and for that I'm thankful. Written by Sarah Wheeler April 24th, 2018 by Savannah
“There is no cure.” I’ve been told this by several specialists, doctors, nurses, and recently Mama has even had to tell me. It’s like when I finally come to terms with it, it hits even harder again. In psychology (if you’ve taken it, or even biology) you learn the 5 stages of grief and loss. I go through all 5 stages at least once or twice a month. Denial, anger, bargaining, depression, and acceptance. Looking back on my life I feel denial with the person I am now. I had symptoms all my life that we just related to growing pains and growing up. I thought all teenagers went through the same thing I was going through. But even going through all of that I felt okay. I felt healthy (compared to how I feel now), and it’s hard to accept the fact that I was once active, participated in more groups and clubs that I can count on both hands, was able to run and play. Now, I can barely move most days. I have to hold onto someone or something if I walk, and most of the time i have to use a wheelchair because I’m constantly on the verge of passing out and the pain is so intense that even walking through the door of a store wears me down completely. Anger. I’m angry a lot. Deep down inside, seriously, I’m like the hulk. I never know when I’m going to just burst and everything that I’m hiding within myself will come pouring out. I angry that it’s me, that it couldn’t be someone who “deserves it”. I know that’s a terrible thing to think. I really wouldn’t wish this on my worst enemy and I live with the thought that if I have to go through this so I can help someone else out in the future, then I’m glad it’s me. I’m tough most days. I’m stubborn as a mule. Bargaining. I bargain with my body daily and I have to laugh at myself because it goes something like this: “okay body. If you let me walk to check my mail, I will sit and rest for at least an hour or so before I try to do anything else.” And guess what! My body makes that promise, except for halfway to the mailbox I feel my heart rate start to climb rapidly, I feel the tunnel vision and see nothing but the dang mailbox, and my breathing becomes labored. I feel my joints start to cave, and my stomach wanting to empty all of it’s contents because the massive tsunami of nausea has hit and is dying to wash everything that I’ve eaten or drank that day away. Depression. I’m mostly a happy person, but there are days where I do feel depressed. That’s completely normal for a person with illnesses that have no cure! These days I want to give up. I lose hope. I lose what I have in sight, and that is still to help people even if I’m not able to help myself! Acceptance. The final part of this cycle. At the end of the day, I know that there is no cure. I know that I can have hope that I may have a cure one day. I know that there is no point of anything else except to accept this, because it isn’t going away. It’s here for the long run. It’s here for my good days and bad days. It’s here for the times I need to get out for appointments, for the groceries, for the occasional social get together. It’s here to stay. This cycle happens to me at least once or twice a month, if not more. But I think that it is perfectly reasonable to go through it. It’s healthy in a sense because you go through it and you are able to see that you can continue to move through it, even if you know there isn’t a cure. You know that you have to keep the hope and continue to move on because there are others out there like you that are going through the same exact thing. You know you have to continue to advocate for yourself and those like you. You have to continue to spread awareness so that maybe one day we can have a cure for all of the incurable syndromes, diseases, disorders, ANYTHING. You live for that day. You pray and you believe and you keep that thought in your mind that one day you won’t have to suffer through it anymore and that the suffering was worth something because it teaches you so much. So continue on you brave warriors. Continue going through the cycle. Continue to advocate. Continue to spread awareness. Continue to hope and pray for a cure, because I know that one day it will happen. By Ron
One of the hardest parts of being chronically ill, for me, has been having to change my career plans. Finding fulfillment and a purpose in life, for me, has always been tied to helping other people. Being chronically ill made it necessary to reevaluate my future and replan what is going to be best for my health. I Can't help others if i'm not in a good place myself. This is a part of spoonie life I haven't seen discussed a lot, so I thought I would share my story. For all of my life, I had always planned on a career as a medical provider. Originally, my plan was to go into neurological surgery, but after having five neuro procedures myself, it would no longer be safe to operate. I switched from a premed track into a medical physics track, as its less of a physical job and more of a mental one. Unfortunately, due to the operations and later the medication I have to be on to control my severe nerve pain, that became very hard. My gpa plummeted and it was suggested I do a medical withdrawal from the program. My attendance was horrible, as I was in and out of the hospital frequently and debilitated with severe pain. I had a really hard time accepting that it would no longer be safe to be a medical provider. I struggled for a few years with it, and kept searching for ways to change this. In 2016, one of the worst things to happen medically occurred, but it was one of the best things that helped me come to peace with the predicament I am in. I had a small brain stem stroke while driving. I went unconscious and was involved in a serious single car accident. Luckily I was not injured. This really put things into perspective for me, as to how serious and unpredictable my health really is. Since that time, I have had 11 transient ischemic attacks and another stroke. Add onto all of this the fact that I have been having problems with my legs, and lately have been getting around with crutches, to all of this and I am slowly coming to the realization that any job that puts me on my feet is not in the best interest of my health. I currently work part time as a pharmacy technician. It's a job that I absolutely love! But last year, one or two short shifts was all I was able to work due to pain and the weakness. I was on leave a fair amount due to surgeries, a stroke, and flare ups. It's not the way I would like things to be and right now, I have been on leave since around the first of the year. I am coming to terms with the fact that I may not be able to work much longer, let alone work in the field I had been dreaming of since I was a child. I'm having more tests soon, and will be talking to my doctor about possibly starting the process to file for disability. It's a topic we've talked about on and off for a year or so, trying to get me to be more receptive of the idea. It's a very personal decision. My PCP (who I have an amazing relationship with) said that i'll know when its time. Well, I really feel like it is. My biggest worry was that if I stopped working, I would not feel fulfilled in life. I have always been someone that got joy and fulfillment from helping others. Not working in healthcare, how would find happiness and purpose in life? Well, I have found purpose and fulfillment by getting involved in the chronic illness community, helping other people coping with chronic conditions how to live the best life possible. I have also found a niche talking to students studying healthcare occupations and introducing them to the other side of the equation. Hopefully by doing that, I can help the next generation of doctors, nurses, etc learn how to help those of us who are sick better. For those of us who are “type A” personalities and always like to have an ironclad plan, changing those plans and reworking them is a challenge. I have always been a planner. I had my whole life planned out, all the way down to which fellowships I wanted to do. Slowly, I am learning to relax a bit and go with the flow. This has been a huge improvement for my mental health. I am learning that there are other ways to find purpose and fulfillment in life, other than just work. I wish I would've learned this sooner. But I guess, better late than never! Trigeminal Neuralgia is known to be one of the worst pains known to modern medicine. It causes sharp electric like shocks that travel through the face. It is also incurable. Medications, surgery, and alternative therapies can help put the pain into a remission or make it more tolerable, but it's a life long condition. And it's a condition that a lot of people are not familiar with, and many of us in the Trigeminal Neuralgia community are trying to change this. What follows is the "readers digest" version of my story with this condition. -Ron My story is not like most. I am 24 and have Trigeminal Neuralgia. The pain started in late March of 2013. It was not all the time, but very debilitating when it struck. I lived with this until early summer, when the attacks became more frequent, went to my primary doctor who thought that I had some knots in my muscles on the left side of my face. I was prescribed muscle relaxers. They did nothing. His next thought was TMJ. I tried the NSAID medications and saw my dentist (as my primary doctor asked me to). My dentist said definitely that what I have going on is NOT anything he can treat and to go back to my primary doc. When I went back with this information, I saw him and his partner, who also did a full evaluation. They both agreed that the symptoms I have are caused by Trigeminal Neuralgia. That was in October of 2013. Prior to that in August, I left my retail job and did so at just the right time, pain had increased to the point that I could hardly function. That led to the diagnosis. November was a very hard month, I was unable to drive due to the pain and the pain medications they had me on until I could get a pain management consult. That happened in December. He immediately put me on Gabapentin. What a nightmare the time to follow was. I had severe memory loss. I could not remember the day, date, where I put stuff, and worst of all, I could not ever remember how I wanted to finish my own sentences. I went back and told my doctor that this medication is a nightmare and I felt like I was going into early onset dementia. This freaked him out, and he told me to go off the gabapentin cold turkey (not recommended, but necessary). I started Lyrica the same day. The pain improved significantly and my memory started to return. By late January, I was back to normal (after the gabapentin and a bout of pneumonia). I had an MRI in late January. It came back clean. The pain hit a high in February, and I had to wait till mid-march to see a neurologist, so I decided to try Upper Cervical Chiropractic care. The neurologist had nothing to offer, except for Tegretol, which I allergic to. I did not see her again. I continued to see the chiropractor until mid April, when the adjustments started to hurt. During this time, I began seeing another interventional pain specialist who began doing a type of nerve block called the SphenoCath. These are non invasive SPG blocks. The first one I had in April 2014, and the second in May 2014. They did work. I began having pain during the Upper Cervical adjustments, and my pain doctor told me to stop seeing the chiropractor and to get an MRI. The MRI showed a few disc herniations in the cervical region. PT was started immediately and so was TENS therapy. At this time, I was being evaluated for a genetic condition that runs in my family, Acute Intermittent Porphyria (AIP), due to some issues I was having with the medications. In June, 2014 the diagnosis was positive and the pain specialist told me she could no longer treat me due to the risks. Back to square one. I sought out a neurosurgeon and found an amazing one here in St. Louis. He suggested MVD surgery, but I was not ready at that point. MY PCP handled the medications while we searched for a neurologist to handle my case. I got lucky in August, 2014 when I found a great neurologist who understood TN. She also confirmed the diagnosis and we started down the list of medications. I began taking Vimpat. This helped a bit, but due to side effects, we couldn’t dose it higher, so Trileptal was added. I started college during this time too. At the start, all was well. I was having no issues, the medications were helping, and all was well. Then October came, and I ended up in the ER with a major flare. This was a wake up call that something had to be done, so I called the surgeon and asked to schedule an MVD. It was scheduled for December 17th and I made an appointment with him in November to have some questions answered. My attendance at school became spotty at best. Luckily I was covered by disability services and a plan was worked out. I ended up in the ER again in November with major pain. At this point, I was only on Trileptal due to cognitive issues, which were impairing my ability to function at school. I made it to my surgery date as soon as I could. But as with any nerve pain, the Trigeminal Neuralgia had a mind of it's own. All in all, from December 2014-October 2015, these are the operations I had: 12/2014: Left side MicroVascular Decompression 1/2015: Left Balloon Compression Rhizotomy 5/2015: Left Side Partial Sensory Rhizotomy 6?2015 Left side wash-out craniectomy for infection 10/2015: Right side Microvascular Decompression and Partial Sensory Rhizotomy Having five brain surgeries in one year is very hard on the body. Unfortunately due to this, I had to withdraw from university for medical reasons. It took me about a year to fully recover from all this. After about a year, the TN pain became more manageable. Today, I am doing magnesium infusions every three weeks, sphenopalatine ganglion nerve blocks as needed, and still taking the anti epileptic medications. The pain is much more controlled that it ever has been, and while I still need pain medications, I am able to live a much more quality life. The Following are images of the Trigeminal Neuralgia information found on the Mayfield Clinic website. This is among the best and most concise information i've found for this condition.
One thing I tell myself and hear others tell me is to stay strong. Some days I feel like I can move mountains and some days I feel like I am buried underneath the mountain with no hope of seeing light again. Strength isn’t necessarily measured with how much you can lift, it can be measured with how far you can go, how strong willed you are, or even your days when you aren’t able to go far or be as strong willed. For me, I try to stay strong for everyone, including myself. I try to stay strong for my family, for my friends, for my other spoonies. But my secret? I’m not strong all the time. I am strong, but I am also very exhausted. I am permanently this way as a result of trying to stay strong all the time. I continue to be “strong” daily. I am stubborn. I am strong. I am a warrior, damnit. No one will tell me different. As a spoonie, I face things on a daily basis that normal people cannot understand and if they were to experience it, they would react totally different. It’s nothing against the “normal” people. It’s just an example of how strong we spoonies are. We don’t get much of a choice. We have to fight a losing battle on a daily basis. Some days we are able to keep the battle at a standstill by taking our medications, feeding our bodies if they are willing, or doing other things to keep everything still. When things are still, that’s the good thing. It means we are on a good/decent day, or a not so bad day. When things start to move with the battle, that’s when all hell breaks loose and we are in fight mode. We do everything we usually do but have to take more medications to try and get the battle at an impasse again. Sometimes the battle rages on for days, Weeks, months, without seeing the end of it in sight. Then one day after we have continued to be strong and continued to be warriors, we see that light that eventually shines back down to us that lets us know that we’ve fought our hardest and that we may have some relief now. Seeing that light shine down is a major relief in itself. It represents a glimmer of hope and a prayer that we may not have another battle for at least a little while. So in the meantime between battles, continue to be strong. Continue to be a warrior. Continue to be brave. Continue to fight your battles. You can do this.
The unknown can be terrifying. We wake up not knowing what’s going to happen today. There could be a number of good things or a number of bad things to happen. We live in the fear of the unknown, but we also expect the unknown. As a person with chronic illnesses, I don’t know what to expect most days, as most others feel the same. We don’t know what to expect from our doctors, our families, our friends. We don’t know if the flare is coming to haunt us for a few days, or is finally giving up and leaving. We don’t know how we will feel tomorrow or the next day. We worry and we stress because that’s human nature. We can’t fight something that’s meant to be and that will happen whether we want it to or not. It’s involuntary. Most days we look past that fear that we have of the unknown. Some days it can consume us. We have to continue to be strong and we have to continue to fight. We cannot let the fear overrun our lives. We have to continue to look past it. We are not in control of what’s going to happen. It’s going to happen anyway. No one knows what’s going to happen. I think that if we did know what was going to happen we would all be so paranoid all the time that we wouldn’t be able to focus on the good things that happen in our lives. Take the time to appreciate the little things. Take the time to say I love you. Take the time to help others and to be kind. Take the time to appreciate the little things as cannot say that enough. Life can be enjoyable. Give hugs. Give kisses. Help others learn to laugh and to love. Embrace the unknown.
-Savannah |
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