8/26/2019 0 Comments Its been difficult..I really wish I could put into words the difficulty of living with chronic pain + illness. In short - IT SUCKS. It’s awful. It’s miserable. It’s exhausting. It’s draining. Some days it’s completely soul crushing. I’ll be the first to admit that I am not always positive, I do believe everything happens for a reason, but that doesn’t mean I have to be positive all of the time. Now, that doesn’t mean that I’m negative and depressed constantly, but when the days get really hard, I cant help but be sad about the way my life is. My pain has increased over the last year or so, but especially over the last few months. It seems as though I’m just playing the waiting game. It took months just for the referral to be sent to a new surgeon. It took weeks for the surgeons office to call me back. In between all of this I’ve been going to physical therapy for massage and TENS unit therapy, but I’ve been waiting for insurance to approve more visits for weeks now.
All the phone calls, waiting, and frustration gets extremely old. Ive been wanting to write about my experiences over the last few months for a while now, I just haven’t had the energy. My baseline pain level has been about an 8/10 consistently, its been the relentless kind of pain that nothing can help, the nauseating kind of pain that makes it hard to do much. I had a fusion on my lower back years ago - that wasn’t done correctly, so that’s been bothering me. But the majority of my pain comes from my upper back where I have a little bit of a curve and herniated discs. Surgically, I am a complex case, so any surgeon I consult with is scared to touch me, its too big of a risk for them. It makes me feel like more of a statistic than a human being.. It’s as if they see so many people that they can justify leaving me this way, because I’m one failed case among hundreds of other people, so its not a big deal to them, they aren’t emotionally attached to me, my quality of life doesn’t matter to them. It’s okay if I’m on Percocet for the rest of my life because they have so many other patients that just one person, doesn’t matter. I feel like my pain management clinic is helping me stay the way I am, they’re helping me stay at an 8/10 baseline, rather than trying to help me improve my quality of life. When I mention that my pain is increasingly getting worse, they suggest 10 more milligrams of Percocet.. They don’t offer up referrals or solutions, they just work to keep me where I’m at. Oh you hurt more? What’s 10 more milligrams of Percocet? Again, I’m just one person to them, so its okay if I’m in pain and on opioids the rest of my life because I’m just a statistic. You would think that actually getting the paper referral sent would be the easiest part. But it was the most frustrating situation. I would call the pain clinic, they would tell me “were sending it right now”, I would then call the surgeon and they would tell me they didn’t receive anything so I would call the pain clinic back and they would tell me “were seriously sending it like right now” and again, they wouldn’t receive it. I’m not joking when I say that this went on for WEEKS. I came into physical therapy crying my eyes out because the referral still wasn’t being sent, so my therapist called and they told him the same thing, “were sending it like right now”, so when I came into physical therapy the next week and it still hadn’t been sent, my therapist called and yelled at the pain clinic, called and talked to the surgeons office, then called the pain clinic three more times before I finally received a call from the surgeon. When I finally did receive a call from the surgeons office, I’m thinking “sweet the referral got sent” but the woman on the phone tells me “we never did receive the referral from your pain clinic but we spoke to “My physical therapist” and were going to take that as a referral.” My pain clinic is literally so incompetent that the surgeon took a referral from a physical therapist, which never happens. They also needed copies of my latest MRIs which my pain clinic refused to send, so my mom and I faxed them. Anyways, its taken a few months, but I FINALLY have an appointment with the new surgeon. And I am just hoping and praying that this man can help me, my physically therapist agrees that its worth trying to find a surgeon to help me, because I’m so young, and my body is just struggling. I cant tell you how thankful I am for my Physical Therapist, he has been the most helpful in this “journey” and I am just beyond blessed to have someone who actually CARES about me, he doesn’t make me feel like a statistic, he actually makes me feel like I am worth helping.. It’s been really hard, but I’m really trying to hang in there, hopefully I can find some help soon.
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7/6/2019 0 Comments Job? No... School? No..I’m sure most people have heard of a little thing called “Disability Benefits”, or “SSI”, though, most people just call it disability.
It’s something you are able to receive if you are considered disabled. Because if you are a disabled person technically your’e not able to work, or not able to work enough to live, pay your bills, etc. To those of us living in the disability “world” it only makes sense that we would receive a little bit of help considering all of the pain were in, daily.. I mean we’re in so much pain there is NO way we could work full time, or at all. To people who don’t live in this world everyday, it seems a bit bizarre, maybe unfair, that there are people in this world who get free money just for hurting or being sick?! For me, it took a long time to decide that I was going to need help. To receive something like this every month, you have to swallow your pride and be able to accept the help. I didn’t want to admit that I wasn’t going to be able to work or live like every other adult, I wasn’t going to be able to move out on my own or support myself financially. To accept the help, I had to realize that I wasn’t going to be like every other 20-something adult. Not only was I born with the majority of my pain and illnesses, but I had failed spinal fusion that damaged my nerves, and destroyed my right leg. I had to accept the fact, that I was going to live with these chronic illnesses, and this chronic pain, as well as this surgery mistake. To muster up the courage and finally decide to apply for disability I had to come to terms with the fact, that my life wasn’t going to be the way I had expected. When I was younger I thought a lot about my future, I wanted to have a job that supported me, I wanted to move out on my own, I dreamed of going to college and becoming a pediatric nurse.. After college I would get married and start a family.. There is a grieving process that comes along with applying for disability, at least for me there was.. I still live at home, I don’t currently have a job, and I don’t go to college. I had to accept the fact that a lot of this wasn’t going to happen on my time line, or at all.. It can be devastating, but I try not to think about it too much.. So getting back to the “free money” thing, I don’t see it as free.. I live in pain every single day, my body was damaged during an operation, I’m not able to live, work, or go to school. These illnesses have cost me so much in my life.. This money is in no way free. It took me so long to be approved, unfortunately, there are people out there who try to play the system, who are dishonest, and that makes it harder for those of us who are honest.. Scoliosis isn’t considered a reason to be “disabled” so to appeal my case I had to hire an attorney and meet with a judge... I was SO nervous, everybody talked about how hard this judge was, how relentless and mean he could be.. He had made people cry, he had yelled, he argued.. So, I was scared to say the least. I got to the Social Security office, I was so scared, even the security guards knew how tough this judge was.. I got into the Court Room, and after speaking with judge for about 10 minutes he had approved my case.. My attorney and all of the security guards were shocked at how fast and nice he was, this was the quickest decision he had ever made.. To say I was relieved was the biggest understatement.. It was like a huge weight had been lifted off my shoulders, I was going to be able to afford my bills, I was going to be able to afford my own groceries, gas, etc.. It’s not enough to live on my own, or live an extravagant lifestyle by any means, but I was going to be able to be independent.. I would no longer have to ask my mom for money, it lifted a financial burden for her as much as it did for me.. It may not be the traditional route of independence, but it definitely isn’t just “free money.” There is so much more to it then that. I fought battle after battle for this sliver of independence and I am not ashamed of that. People can judge, but they have no idea what it is like to live in this dysfunctional body.. I wish I could put into words the difficulty of this life.. But nobody will truly understand it until they’ve been there themselves.. 1/27/2019 0 Comments Dear, painDear Pain,
By now we’ve gotten to know each other quite well. You make my bones ache and my muscles hurt, you make my nerves shock, you make me feel weak, and heavy.. you make me exhausted, but you make it impossible to sleep. Most days, when you’re acting out, you make it hard for me to do much of anything. Most people don’t know you as well as I do.. I’ve seen firsthand, people who meet you for the first time, and they don’t know how to handle you, and they really don’t like you.. for most, you don’t stick around long.. But for others, they think you’re going away soon.. little do they know, you never will.. Pain, I hate you, but I’m not mad at you anymore, not like I was when I first met you. When I first met you, I loathed you, I hated everything about you, I wanted you to go away, I thought I could make you leave, but little did I know, there was nothing I could do to make you go away. Maybe you'd ease up a bit, but you've never gone away completely, not since I first met you.. I was so mad at you for taking so many people, opportunities, and experiences away from me... When I met you, I was in middle school, and I was so mad at you.. I prayed and I wished and I hoped that you would just go away.. Pain, i’m not mad at you, because I know you taught me so many things. For some reason, in this life, I’m supposed to know you. I’m one of those people that likes to believe that everything happens for a reason, so for some reason, for some unknown reason... I’m supposed to know you. I don’t cry over you as much as I used to, I used to cry because of you every single night.. Most days, I’m completely frustrated and fed up with you.. Most days, I wish I didn’t know you... You’ve caused so many surgeries, scans, and ER trips, medications, and injections.. You've created a lifelong battle, I never wanted to fight.. Not only have you caused excruciating physical pain. You’ve caused many arguments, and you’ve made my mom shed so many tears. Because of you, I will never live a normal life. So, I have to learn to live with you, and it’s been the hardest lesson I’ve ever had to learn. I never wanted to know what it felt like to hurt, every minute of every day. I never wanted to know, what it was like to be chronically ill. I never even wanted to know what the words “chronic illness” meant.. I never wanted to know, what it was like to wake up from surgery, or to even know, what the inside of an OR looked like. Pain, you taught me so many things I didn’t want to know, but you also taught me so many things that I needed to learn. I wish I didn’t know you as well as I do, but because of you.. I know how to empathize.. Because of you, I can help others who are just getting to know you.. I believe, because of you, I feel deeper, I love more, I care more.. Because of you, I learned who my true friends are. Because of you, I learned there’s no one better than family. So, I would like to thank you for the many good lessons.. But with you around, it makes my life harder than most.. I have to work harder, push through more obstacles, and endure more, to get through every day.. If I could choose, whether I had to know you or not, I would choose to never know who you are, what you do, or how you make me feel... As much as I know that you’ll never go away completely, I’ll never stop fighting you. I don’t expect you to go away, but please, let me breathe. Love, your lifelong friend, Madison 1/21/2019 0 Comments if i had 24 hours to be normal..When you have extreme Chronic Pain and Rare Chronic Illnesses, you often wonder what it would be like to be "normal" to not live with any pain, or symptoms, you wonder what you would do if you only had "24 Hours to be normal." I often look at healthy people and wonder what it would be like, "what would it be like to be able to clean the entire house and still have energy to get on with your day." Or I wonder what it would be like to be able to go on a long road trip and still be able to enjoy the day after a very long car ride. I wonder what it's like to go to the grocery store, and THEN go home and cook the food too. I also often wonder what it would be like to be able to walk the dog every single day without horrible pain.
I don't wish it was my life, I'm happy with my life, I truly believe my pain, illnesses, the way my life is, all has a purpose, there is a reason my life is, the way that it is. But if I sit down and really think about what it would be like to be healthy, it's fascinating. When I look at healthy people I can't help but be fascinated by them, by their energy levels and lack of pain. It is SO fascinating to me that there are actually people who are able to clean the house and grocery shop and walk the dog, and go to work, all in one day. So, if I had 24hrs to be healthy and "normal" here is what I would do. I would probably wash, dry, fold, and put away all of my laundry. Yes, I do actually wish that i could do my laundry, without horrible repercussions. Generally when I do laundry, I wash it one day, then fold and put away the next day. While the laundry was cycling through, I would clean and organize my room, REALLY good. Remember, I only have 24hrs before the pain returns, so I want to get the important stuff done. When the chores were out of the way, I would go for a long run, with my dogs.. On a normal day, I'm not able to walk my dogs without being in bed the rest of the day. When I first got sick, I dreamt of going for long runs, I used to be able to run before my back started to hurt when I was 11. I don't dream of running anymore, I know my limits, but if I had one day to do anything and not deal with pain, I'd run. After my laundry, my chores, and my run, I would take a LONG HOT shower. When I got out of the shower, I would do my make up and curl my hair. Because of my adrenal issues, I sweat too much to wear make up, and my hair doesn't stay curly, because, well, sweat! Pre-Illness, before my extreme pain and illness really set in, I would do my make up and hair everyday. After I was dressed for the day, I would sit at my desk, and sketch, color, and paint. I usually have to craft in small increments, because sitting for too long causes pain, so I would love it if I was able to sit at my desk for a few consecutive hours! When I was finished crafting, I would go to the grocery store, buy food, come home and make my family dinner.. I would probably take my dogs on another evening walk, and love it! In this 24hrs, I would be able to put my head on my pillow that night, and just fall asleep, no meds, no tears, I would just sleep. I wouldnt fill my one day of normalcy with too much, wait, yes I would. Because when you deal with life long illnesses - a day without pain would be a dream come true, so I would just jam pack my day! You mean, I can do ANYthing I want, and I won't deal with horrible, horrible pain?!? Heck Yes, I am going to do everything! Again, I don't unhealthily long for a different life, I don't wonder everyday, I love my life, and I believe my pain has a purpose, but sometimes I wonder, what I would be able to do if I didn't live in pain. 12/23/2017 0 Comments everyday pain, everyday routine.Chronic - Basically means it lasts forever.
So when you have Chronic Pain and Chronic Illness, you eventually fall into an Everyday routine of trying to manage your pain. Usually you have an Everyday routine, and an In Case of Emergency routine, when the pain is more horrible than usual. This blog is all about my routines I have acquired over 9 years of having severe Chronic Pain. EVERYDAY ROUTINE My Everyday Pain Routine is back pain, mostly sharp pain in my upper back, but a lot of throbbing pain in my lower back, I also have pain in my neck and it's really hard to hold my head up, I have permanent nerve damage in my right hip and that's a sort of throbbing sharp pain, I also get these weird dull aches behind my eyes. So, my everyday routine consists of a lot. First of all I have to have MY bed, I sleep in MY bed for pain management, I have a cooling gel Mattress Pad, and a Memory foam with cooling gel pillow, they are absolute necessities. If I have to stay somewhere without my bed, I will ALWAYS bring my pillow. I've been using a memory foam bed/pillow since my pain began. So, I start in the morning by taking pain medications, I take 10+ pills every single day, 6 of them being just for pain. When I first started my journey with Chronic Pain, I didn't even know how to swallow a pill. Now I can swallow all my meds at the same time. Some won't agree with my choice to take prescription medications, but that's okay, you don't have to agree, you aren't the one swallowing the meds. Especially now with there being a huge nationwide 'crisis' over Narcotics. I get it, people overdose, addicts get prescriptions, but don't punish the rest of us that actually NEED the meds. I honestly can tell you that I would NOT be able to function without my Medications. If I have to live with pain, I feel blessed that I have doctors trying to manage it. I think the most important part of managing Chronic Illness is rest. You have to know when to let your body REST. It can be hard for an independent, do-it-all person, to make themselves rest. At first, and even to this day, I have a hard time "justifying" rest, but its a must for people who live with pain everyday! It's hard to explain how it feels to require so much rest, I feel guilt when I need to rest, because "other people don't need this much rest to function." But I shouldn't feel guilty because other people don't have to live inside a painful body! Ever since my pain started 9 years ago, I've been using a heating pad everyday. When I go to bed, I turn my heating pad on, it's set to turn off automatically after 2hrs, and I can't explain how amazing it feels, it doesn't take away much pain, but it does relax some of my muscles. Another must for me is distractions, distractions, distractions. One of my biggest distractions being Netflix, to most people Netflix is just a commercial free way of watching TV, but for me, and many other Chronic Pain Warriors, Netflix is so beneficial. Instead of laying in your quiet room, thinking about your pain, you have Netflix. I don't even know that I watch it the majority of the time, I just like to have the sound in my room so I'm not constantly thinking about my pain throughout my entire body. Another thing I started as a pain distraction was Instagram, when I had my 3rd surgery and my nerve was damaged, leaving me with extreme pain, Instagram was a wonderful distraction, and it still is! Another element to Instagram is the bond you make with other people who are going through the same thing as you. One of my biggest distractions/things that help my pain - are my big snuggly black labs! They ALWAYS know when I don't feel good and they always snuggle and comfort me! I.C.E - IN CASE OF EMERGENCY - PAIN ROUTINE My IN CASE OF EMERGENCY - PAIN is all of my usual pain symptoms as listed above, but to the extreme, with an added Migraine. But usually when my pain gets to a point where I can't handle it anymore, it's in my back. In the case where my pain is too horrible, I will REST ALLL DAY, in my bed, with my heating pad going. I will Max out all of my usual Pain Medication, but I will add in an 800mg Ibuprofen and a Muscle Relaxer, usually when I have an excess amount of pain, it will make me very Nauseated, in which case I will take Zofran! On a normal day I HATE showering, it uses so much energy, it just wipes me out and it hurts so much. So on an ICE pain day, Showering is my last resort, but if I'm reduced to tears and really struggling I will just go SIT in the shower and let the HOT HOT water run down my pain riddled body. After I've taken meds, had a hot shower, I will turn on Netflix and get on my phone (if I don't have a horrible Migraine.) My Netflix list right now consists of: Jane the Virgin, NCIS (I freaking love Gibbs), I also watch Criminal Minds, and my Go-To movie would have to be the original Bring it On. I couldn't tell you why, I just love it! If I can play on my phone, (meaning if I don't have a headache) I will play Disney Emoji Blitz (this is pretty much the only game I will play.) It's a VERY good distraction. If none of this aids in managing my pain, I will make a trip to the ER for Break-thru pain medication. Not going to lie, living with this daily pain that requires a daily routine, it is not easy. But somehow, someway, we get through everyday and keep going, somehow you eventually get to know your body and what you need. Don't ever feel guilty for listening to your body and doing what is best for YOU. Nobody has to live in this body but you, so take care of it, do what you need no matter what anyone else says. 8/13/2017 0 Comments my story..sto-ry {an account of past events in someone's life or in the evolution of something} I wanted to share My story, my medical story. I keep typing this out, deleting, retyping, and deleting again.. I've been thinking about this post for months now, I think about what to type, I think about what I want to share, and what I want people to take away from my story.
I think, and I think, and I think I've just been overthinking the whole thing. That my story should just be shared, plain and simple. But, that's the thing, it's not plain and simple. Preparing to write this, has brought up so many emotions, good and bad. Thinking about everything I've gone through, medically, has been so hard. It is a lot. I've been through a lot. But somehow I'm still here to tell the story.. I'm still here to let people know who I am, and what I've been through... So I guess I'll just start from the beginning.. I was born with Severe Congenital Scoliosis. I had a cute little crooked head, and at 6 months old, my family started to notice that I sat very crooked.. My mom took me in to see a pediatrician, he recommended that they rush me up to Primary Children's Hospital. After doing scans, they found that I had a severe curve in my Lumbar Spine. Starting at 6 months old I had an X-Ray and an specialist appointment, once a year. I remember being fitted for my first hard shell back brace, I was 2 years old. I went to this specialist every year, from 6 months until I was 12 years old, same specialist, same X-rays.. Every. Year. I remember hating those appointments. Not because of the usual reasons, but in elementary school I wanted the {Perfect Attendance} award, and I knew, I knew, I would never get it, because every year i would go to this appointment.. It sounds silly, but when I was young, it made me so sad that I couldn't be "normal"... I always thought these appointments were ridiculous because, I was convinced there was NOTHING wrong with me.. I remember saying, "so what? my back is a little crooked, it is NOT a big deal." "I don't even need to go to the appointment this time, I'm sure my back hasn't gotten worse." When I was 2 or 3 years old, I got my first hard shell back brace, I remember hating it.. The doctor tried to cheer me up by helping me put stickers on it, and placing hot pink Velcro straps.. My mom was always very good about having me wear it, but still, it didn't touch my curve. But, because I wasn't in pain, they just wanted to watch me with X-Rays until it got worse. The brace didn't change anything because my curve was way too low. My curve started in my sacrum and lumbar spine, then shot up, where I also have a small curvature in my thoracic spine.. I played soccer from 5 years old to 12 years old, I played until I couldn't play anymore, I loved it. I also took dance, I actually would wear my dance clothes underneath my soccer uniform so I could leave my games early to go to dance.. I also loved to ride my bike, play dodge ball, kick ball, and touch football, I loved long hikes and running. It seemed like if I wasn't on the trampoline I was doing something else outside. If I wasn't playing outside, I was playing a dance game on the x-box or running around with my Aunt's dogs.. I loved my life, I was a very happy kid.. When I turned 12, it allll changed.. I can remember the exact day I had my first episode of really bad back pain.. I decided to go on a walk with my "best friend" at the time. We walked from my house to the local High School, which was about 10 miles round trip.. I remember, on the way home, my back started to REALLY hurt, I got home and cried because it was hurting so bad, it was the first time I had ever felt back pain, and it was bad.. After this, everything went down hill, I was taking Advil everyday, I slowly quit everything. First, soccer, then dance, and everything else followed. It was very, very, hard for me to quit the things I loved most.. The pain never went away after that. Literally. When the pain began, we went to see the Pediatric Orthopedic Specialist, who had done my X-Ray appointments every year. He told my mom and I, that my curve had grown, but that he wasn't concerned. He said, if I ever did need surgery, it would be for cosmetic purposes only.. And BOY was he SO wrong!!! I would in fact need surgery, and I would need a lot of it.. After that appointment, we decided to seek help elsewhere. My mom works at our local hospital, she actually worked on the ortho surgery unit, so she knew of a surgeon who actually specialized in Scoliosis. He had an amazing record, he went to school in Wisconsin to specialize in Scoliosis, all of his patients adored him. When he looked at my scans, he immediately knew that he needed to surgically help me. My Lumbar Spine, was rubbing against my Hip Bone, I was walking crooked, I was in so much pain.. My pain started when I was 12, in November 2011 I started seeing this surgeon, In April 2012, I had my very first surgery.. Because my surgeon was an adult doctor he had to go to the hospital board and fight for me, fight for me to get the operation that I so desperately needed, by this time my curve was 90-100* .. Before I was able to have my surgery I had to go through months of physical therapy, and I started taking stronger pain medication, daily. I was having horrible, daily back pain.. I was being checked out of school almost daily, because of pain. When I started this medical journey I was in 7th/8th grade, and my school didn't offer any sort of help or support.. It was basically "good luck, sorry".. I still continued to try to go to school, but, I just kept falling further behind with everything going on, PT, surgery, procedures, and appointments. The school offered an online course, after spending 6hrs+ a day, the school informed me that those credits didn't count, so that's when I was done with them, I had to drop out. I'm now, planning to take my GED. I went through some struggles with all of this, not just medically, but family struggles, school, my mental health.. It was all a mess.. After I had my 1st surgery, my "best friend" since 3rd grade, told me she couldn't hang out with me anymore, that I wasn't "normal" anymore.. She came to see me when I got home from my 1st surgery, and when I had fallen asleep, she didn't want to come back to see me.. When I never got better, we weren't friends anymore.. Our group of friends from school, they didn't want to hang out with me either.. I stopped having friends, I wasn't able to sit through church anymore.. I couldn't do anything. And it sort of broke me, I didn't know how to handle it, I was so young and it was Soo not fair.. No teen should have to live through this sort of pain. I struggled with it for a long time, "why me?", "why can't I be (normal)?", "This is all my fault, I pushed myself too hard." I remember when I first started having pain, when I took that 10 mile walk, I thought that it was my fault, that my walk damaged me.. That I deserved this.. I distinctly remember not wanting to be sad anymore, I was in pain, and I held my head up high for most of the time, but after a few years, I started to get sad and hopeless. Who deserved to live in this much pain? with no doctor in sight to help? My siblings struggled with me getting attention.. Even though it wasn't the kind of attention you would want, they struggled. People were visiting me, grieving for me, praying for me, bringing me gifts, and I never understood why my siblings were jealous. I was going through something impossible for a 12/14 year old, and they were upset I was being given, {get well} gifts. It's not like we were celebrating my birthday everyday of the year, I was in a lot of pain, and going through a lot of surgeries.. I wasn't celebrating, I was in pain.. Most of my gifts? I didn't even use or eat because I was in too much pain after surgery.. If I could trade it all to be able to be pain free, I would in a heart beat. I will never understand the hurtful words they have said to me because of my medical situation, I will never understand how they could think I'm spoiled, I will never understand why they were jealous of the attention I was getting.. But it's not for me to understand I suppose, I was really hurt by them.. When my body was hurting me physically, they were hurting me emotionally, they were hurting my heart, when I needed them the most.. They've told me that they hate me.. This life wasn't something I imagined for myself, these relationships weren't something I ever wanted for me or my siblings.. But, it is, what it is.. I never meant to pull my mom away from them for my surgeries, or so she could rush me to the ER, or so she could lay by me in my bed while I screamed in pain.. I never meant for any of it to happen, it just did. 4/22/2017 1 Comment The elephant in the room..This is something deeply personal that I want to share, actually, that I need to share..
I have this knot in my stomach, this hole in my heart, these feelings that I don't know how to process. I've let these feelings just sit for too long now.. It has kind of been like an injury that I've ignored, that I let get worse. I haven't tried to heal it, I haven't even wanted to acknowledge that there is an injury. I keep getting this feeling, I keep feeling like I need to write it all out, share my feelings, just FEEL my feelings. For about 3 or 4 years now INSTAGRAM, has been a passion of mine. I love to help people, I love to support people, and I love to be supported. Living with medical conditions is NOT easy, and at 15 years old I had just had my 3rd spinal fusion surgery, they put a screw in my L2 nerve, we didn't know it at the time, all we knew was I couldn't walk or move without excruciating pain.. Anyways, I was preparing to have my 4th spinal fusion, they were calling it exploratory surgery because they didn't know what was wrong or if anything was wrong. When they got in there it was a mess, and I still live with severe nerve damage to this day. So when I was 15, preparing to have my 4th spinal fusion surgery, I was lonely. I was so lonely. I had to stop going to public school because of the amount of pain I was in. My "friends" ? They stopped talking to me after my 1st spinal fusion surgery. So, I was lonely, Looking for support, and I found it. I found my biggest support within the Instagram medical community, more like Instagram family. From then on, I was posting everyday, I was writing encouraging posts for others, but I was also writing encouraging posts for myself. I was sharing scar pictures, updates from doctors appointments, I was sharing my concerns and my worries but also my victories, big and small. I shared my story and gained so much support. My 4th surgery was a cake walk, with all the supporters I had. I mean, it was painful, but I was so encouraged and loved, that I felt like I could do it. But there was one {elephant} in particular that I got really close with, in fact when I had my 4th surgery, {theirs} was only one day before mine.. 2/22/2017 1 Comment I Hate you! Love, your familyWith chronic illness, you'll deal with judgement, you'll deal with people who don't like you, people who think you're faking.. But your family will always be there to support you, right?? Well, that's not always the case.. Not everyone, has support from everyone in their family..
Actually I've talked to plenty of people who don't receive support from family.. People who receive hatred from family.. and as sad as it is, I've just had a large slap in the face from the reality of chronic illness & rare disease, the reality of no support from family.. I have a select few family members who are really there for me, who really support me.. I have some, that are there for me just enough that I feel like they support & love me.. My Mom, she is my biggest support, she is amazing in every aspect of what I deal with and endure.. She's seen and been through it all with me. She believes me, she advocates for me, and she's always there for me when I need her.. I have my grandma, she is a huge support as well, she's always there to comfort me, & when I get a new diagnosis, she always asks how to spell it, so she can "research and learn about it" And then I have a couple.. a couple, who hate me.. who loathe me, my illness, everything about me.. You would think being family, you would receive support no matter what? It's just not the case. I've felt angry, upset, hurt, heartbroken, and just generally so so sad, about this recent situation I've found myself in.. Recently my sibilings decided to tell me "exactly, how they've always felt." To say it hurt would be an understatement. The things that have been said, cannot be unsaid, and it hurts, because they told me "they mean every word, and don't want to take back any of it." If I ever do, it's going to take me a very long time to heal, and forgive this.. So my sister is 16 & my brother is 20, they are both rather outspoken, and can get pretty violent with words. My mother and my sister were arguing {like teenagers and parents do}, long story short, I got myself caught up in all of it, and my brother came to my sisters "rescue".. When speaking to my mom they said.. "You and dad always kiss Madison's a**" "Madison gets away with ANYthing because she's a Damn cripple" "I hate her, I hate her so much" "I'm not even kidding, I've hated her since the moment she had surgery" "she gets whatever she wants because she's in "pain"" "her getting fluids is completely ridiculous, it's disgusting, do you even know what is in those?" "She has no sense of the real world, she doesn't work or have friends, she doesn't know how hard it is to live a normal life" "I hate her so much, I hate her, I hate her" "I can only stand to be around her for so long" And so much more.. I could hear all of this being said, as I was sitting in the other room. I cried, and I was hurt, I went in and all I said was "I hurt EVERY f***ing day, you have NO IDEA what the hell you're talking about! I don't have a job because I HURT, I hurt so bad I can't move sometimes. Did you know that people with chronic illnesses end up alone, depressed, and sometimes turn to suicide because nobody believes them or supports them, and they don't have support from family?? NONE of this is my fault, I didn't ask for any of this, and I certainly didn't mean to make you hate me" Granted, my mom spoke to them and tried to explain, but they said some pretty nasty stuff to her as well.. Now, I know everybody goes through their own thing, and when people say hurtful things, it's because they're hurting.. But that doesn't make it okay for anybody, to talk to me like that, for anybody to hate me like that.. It's been heartbreaking for my mom and I both, it's just another thing we have to deal with when it comes to illness.. People think that the hard part about chronic illnesses and rare diseases, is the illness/disease itself. I mean, it is, but there is SO much More to it than that.. There are so many struggles attached.. So many things that we have to battle with daily, in addition to the pain and illness.. I wish I could reach out to everybody who deals with this rejection and hatred, because of illness/disease.. I wish I could reach out and tell you; No matter what your diagnosis, the treatment you're going through, the pain you feel, the job you have or don't have, I want you to know YOU are LOVED, YOU Matter.. You are doing such a good job managing your illness and your life, I support you, I hope your pain is manageable, and your symptoms livable.. Even if no one else does, I support you, I love you. Dear Family, I Love You, Even if you Hate me! Love, Madison |
AuthorMy name is Madison, I have quite a few rare diseases and chronic illnesses. Archives
July 2019
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