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When I was a preteen I started having pelvic pain. Not sure why. I was too embarrassed to talk about it with anyone. So I kept the pain to myself saying it was a stomach ache. All I knew as a preteen was it hurt like razerblades when I used the restroom. Like a UTI. Nothing helped the pain and I didn't have an infection....this was the start. I had to tell my friends I couldn't hang out, or I didn't want to. My attitude was BAD. I felt angry, all of the time. I was never patient unless I really had to be, which was hard still. I was miserable and in pain. I thought of suicide, alot. What kind of life was this? This wasn't living. I was just alive and here, but not serving any purpose except causing others to be upset by my frustration and my inconveniences. Suicide. I started having strong feelings of suicide after a few years of doctors telling me nothing was wrong. So..I was around 14 or 15. I mean, if nothing was wrong and I felt in so much pain...what was I supposed to do? I really thought maybe I am crazy. I remember looking in the bathroom mirror asking myself, "Am I crazy?" "If I am, what should I do? Should I end my life? Everyone including my family made me feel like I was stupid and not with it. That I had no valid excuses for anything because I was the one who always complained, always was sick and I had nothing but it is all mental to tell them. Suicidal ideas got worse when I started dreaming in pain. So not even in my dreams could I get away from the pain I was in. I used to have dreams of sitting in the bathroom in pain, feeling what I now know was my bladder spasming and inflamed. I used to wake up middle of the night to take a bath and cross my fingers maybe it will help. It usually didn't. I had dreams of my family leaving me to die somewhere while I was yelling for them to help me and screaming, " I'm not crazy!" I used to wake up shaking and my heart racing. Popular comments I got. "We can't find anything wrong with you." "Try taking more omega 3s and eat more almonds" "Eat less gluten" "It won't last forever" "Take some advil or tylenol" "Stop consuming sugar" "Exercise more often" "Stop thinking about it" "Stop talking about it" "Drink cranberry juice" ( this one is extremely bad for people with IC ) "you don't have an infection, so it must not be that bad" "Depression can make you hurt" ( yes but not this case) So many more I could say... but let's just say most of them just made me feel like a shitty person, friend...family member. In junior high, during 8th grade gossip went around i was purposely skipping school. I remember a boy flat out yelled at me asking when I was going to skip school again. Everyone heard him. I first felt embarrassed, but then my anger boiled. I walked straight up to him and screamed in his face that, "I'm fucking sick you piece of shit! If you know the fucking cure then let me fucking know!" No one talked like that with me again. And amazingly the teacher just went back to getting ready to teach and the boy actually apologized later in the year. I still thought he was a piece of shit, but accepted the apology. Going on mid teens im in high-school. Towards the worst of my disease I missed so much school my sophomore year i had to do 8 Saturday schools. Because I couldn't figure out what was wrong with me, I had no valid doctor note to excuse me from missing school. 8 hours, 8 Saturday schools, and they wouldn't let us put our heads down or even put our elbows on the table. I remember feeling extremely sick and in pain at a few of them. More than usual. It was awful. My English teacher who was known to be mean (putting it in kind words) had been explaining something to the class about when something was due. Also might I add i started loosing my middle frequency hearing around this time. I got up to ask her what she said and she yelled at me and said, "if you came to class more often you'd know what I am talking about". I was shaken and in shock a teacher would do this to a student in front of the whole class. I remember sitting down and got teary eyed. I know a few friends came to me and asked if I was okay. I just remembered nodding and just looking down at my book, but I was too upset to read. Alot of different emotions came from this confrontation. 1, she's a punk and doesn't mind being told she is, she fed off of people thinking she was above them because she had a strong personality and frankly just a bitch. 2, its my fault this happened because I did miss alot of school, and if I wasn't sick I wouldn't miss alot of school.  3. But if im just crazy and somehow manifesting this pain then what the hell is wrong with me? Jumping ahead to my junior year. The pain is too much. When I go to school in the morning I was going straight to the nurse after my first class. My lips would go pale and I'd get shaky and I always was on thr verge of crying from mental and emotional exhaustion. I think she knew I wasn't faking it and something really was wrong with me. She always let me lay down and never forced me to leave and go back to class. I guess now that my pain was causing my lips to go pale and fatigue started getting extremely bad it was obvious SOMETHING was wrong. I wish I knew the nurses name, she was one of the kindest and empathetic people I had in my life at the time. 3 weeks into my sophomore year my mom and I talk about letting me do homeschool. A high-school approved online curriculum created by University. I could no longer get out of bed in the morning. I was able to do my hw in bed though and was able to finish courses as fast as I wanted. Just that happening released so much stress off of my shoulders. That is something I will never be able to express, how thankful I am to my mom for finding a way to help me. Sometimes I wonder if it was just so she didn't have to deal with the school threatening me due to unexcused absences and even having her be threatened by the school system. Sorry again for a long book.... I just needed to get that out. Next post about how I finally found the right doctor and how I was tested for IC in a way that is no longer considered humane to do, wtheck IC is and the road to remission.

What the heck is LDN you ask? Its Low dose Naltrexone. (Imagine me saying this as a game host) https://ldnresearchtrust.org/can-ldn-cause-anxiety-and-depression https://doi.org/10.1007/s11916-020-00898-0 If you don't want to read the articles here is a summary: Summary Low-dose naltrexone (LDN) has shown promise to reduce symptoms related to chronic pain conditions such as fibromyalgia, inflammatory bowel conditions, and multiple sclerosis. The mechanism of LDN appears to be modulation of neuro-inflammation, specifically, the modulation of the glial cells and release of inflammatory chemicals in the central nervous system. These effects appear to unique at low dosage compared to dosage for food and drug administration approved use for alcohol and opioid dependence. We review the evidence that LDN has shown more than promise and should be further investigated in clinical practice. Some diseases LDN may help with And I went ahead and downloaded a pdf version of this study, just for you! Low-Dose Naltrexone (LDN)—Review of Therapeutic UtilizationDownload So, back to my actual blogging. I decided I wanted to get back into physical therapy and try to get back into shape and the only way I can safely is with physical therapy. Well, I am so glad I did. Finding a functional doctor was one of the best decisions I've made in my life. Yeah, im overweight. Before my daughter I was about 135 lbs. For a 5 foot 3 inch woman its a good healthy weight. Well since getting pregnant with my daughter I have slowly accended to 185 lbs. I am going to be honest. For someone who never struggled with my weight I never thought this was going to happen to me. But I got sick with pneumonia while pregnant and after she was born I was the one stuck in the hospital while she was cleared to go home. Of course they let her stay with me, but man....if it weren't for modern science and medicine I really don't think I'd be here today. My lungs were severely inflamed. I coughed hard enough that I unknowingly broke my water. The night before I seriously thought I just peed myself. I mean, that is what 8 to 9 month pregnant women do. You hear me ladies, right? Well I went back to bed not thinking anything of it. Woke up, felt a bit tighter but nothing too terrible. It was actually mothers day, 2017. May 14, 2017. We went to eat breakfast as a family and I just had this feeling something wasn't right. I decided to be cautious and go ahead and get checked. Well guess what?? Amniotic fluid was leaking and no contractions all night. Emergency c-section here we go. The nurses didn't say emergency but saying ill be in surgery in about 20 minutes I think is considered emergency. We didn't even have bags in the car, etc. My partner he went to take our boys home and stay with his parents. He drove back just in time to come to my side before surgery. I'm fairly certain he had to of been speeding and freaking out at the same time. None of us were expecting this. My mommy instincts started to worry. If my water had broke the night before and no contractions that could be very dangerous for the baby. Well we ended up with a healthy 6 lbs 8 oz baby girl. 18 inches. She was a tiny little thing with jet black hair. Looked just like her daddy with Puerto Rican vibes about her. (Now she is blonde ha!) I was so happy to see her and not be pregnant anymore. I could finally get on hard-core antibiotics and the 9 yards. They stitched me up and put a band around my waist to keep me from ripping my stitches everytime I coughed. But, that was the beginning of several long difficult and painful years. Within 3 years I will have gotten graves disease and had a total thyroidectomy and total hysterectomy. All inflammation present. Before my daughter I had my gallbladder removed due to it not functioning at all. Yes, I got the functioning test. My body was nearly depleted. All this said, pregnancy nearly killed me and exasperated my inflammation. My weight is a big factor. I cant exercise like a normal average person because if I do my inflammation gets worse and then I feel like I have the flu the next several days. I remember when I was younger how exercising felt so good the next day. The satisfaction of the soreness you got after a good days work out. Something to remind yourself that you didn't stay on the couch and play final fantasy or assassins creed all day. You got your ass up and moved. But for people like I am today...its just not possible to work out and not feel sick, flu like. I want to exercise. I want to loose weight. But the damn inflammation is so strong. (Just got a vision of Luke Skywalker being strong in the force. Hey you can't blame me for trying to be funny every now and then). My point is this: Inflammation sucks and its something LDN may help with. My story with LDN is after 2 weeks I felt less fatigued and less in a fog. A fog I didn't even realize I was in. The way I felt before I got pregnant with my daughter. I know that sounds so bad but its true. I can think more clearly and I have more energy. Im not talking about fatigue from taking care of a baby. Fatigue is when you sleep for the whole day and you still feel like you can't move around. It is no matter how much chocolate your partner may be bribing you, you still don't want to get up and move. And its not from depression! Although having depression as a secondary condition is likely. Which makes it all a big circle that never ends. I started at 1mg of LDN, I had to have it compounded. Currently I am moving up to 3mg tomorrow. It will have been nearly 2.5 months since I started it. Huge difference. I figured, hell, ive tried so many things, why not LDN? I wrote a book. More tomorrow.

Well, my back has been aching incredibly today. Not just an ache but a sharp throbbing. The first time i remember hurting my back was in grade school, I want to say 4th grade. Remember school gyms? How hard they are, concrete underneath? Well, it had been raining and I slipped like I slipped on a banana peel. Landing on my lower back and hit the back of my head. I dont remember what happened after. I think I tried to ignore it. I dont remember my parents knowing or doing anything for me. It didn't bother me like it does now though. The same year, again at school, I was playing soccer in a muddy field. I slipped back hit my lower back AGAIN! And you guessed it. I hit the back of my head again too. Oh and when I rolled over to try to get up the soccer ball hit me in the FACE. hit my nose, while I was in the mud, with what felt like a broken back. I dont remember who but two girls helped me up and took me to the nurses office. I remember an ice pack and my mom coming to get me. Still didn't go to the doctor. I mean, backs are not THAT important, especially when you are young and still growing. Augh. In hindsight frustration doesn't amount to the anger I used to have with my parents. Fast forward 25ish years. I had been starting to get chronic back pain for about ten years at this point. I went and got an xray. Showed old injuries. Was told it was consistent with the falls I had when I was younger. My last doctor I went to had me get a CT. Well, turns out I had fractured my back at some point. There were two triangle fractures in two vertebrae showing I had a fall that forced several of my vertebrae to crush up against each other and two created literal fractures. It is consistent with an old injury and with the two falls I had when I was younger. It would have caused intense pain and difficulty walking and spasms. (Yep i experienced all that and more). Along with all of this when I was 18 I was finally diagnosed correctly with Interstitial Cystitis. To make it quick and easy to understand its basically having ulcers or one whole ulcer in your bladder exposing the nerves and veins to everything you eat and drink. So yeah, its F'n painful. I was equally grateful and equally pissed at prior doctors who dismissed me and put me through an emotional rollercoaster. I wanted to make cards with a picture of me flipping the doctor off and send it to all of the doctors who said I was a hypochondriac or just wanting attention. 4To this day I suffer from ptsd. PTSD. Its not what you think. It can mean so many things. For me, it is if I feel well, I get extremely anxious and worried I will start to hurt again and be in chronic pain again for who knows how long. Let me give some examples. The movies. I went to the movies this time by myself. I remember I was going to school as a single mom and my son was in daycare still and I had some time to kill. Well I felt good going in. I had no reason to think I would feel ill or in pain. I went to use the restroom before the movie and BAM it hit me hard. My bladder started to spasm so bad and so painfully my lips turned pale. I felt like I was going to faint. The only thing I wanted to do was go home and sit in the bath and cry and hope the pain goes away. I wanted to be away from people who I might have to explain myself too. I just wanted to go home. I did go home. I never got to see the movie. Things like that make me scared to make plans. What if I decide to go camping or go on vacation? Will I end up being in pain the whole trip and be an annoyance to anyone who went with me? Will I be looked at like im always the sick one and can never have fun? Am I just a flake for having to cancel all the time when it truly was my intention to go out with friends or family. No. I would give almost anything to be free of this pain. Its unpredictable, painful, chronic, considered a disability now. I hate not knowing when im going to feel okay. Or how long I will feel okay. My "normal", is everyone's bad day. My unusual days are good days where I get through it without having to take tylenol and motrin interchanging all day. And when im feeling good that is when my ptsd comes in. Its weird. My ptsd is triggered when I feel well. When will the next time I feel sick be? What type of pain will it be? Will I be able to get through it this time? What kind of life is this??? Daily life of a chronic pain sufferer.

I must have sounded crazy when I asked my childhood best friend if she experienced pain everyday. I remember thinking I was nervous to ask her, because I knew I would sound strange. With a confused look on her face she said, "No...". I can't remember if she asked why or not, but if she did I don't remember what I said. I do remember realizing that I was different. There was something wrong with me. At this point, I didn't know if I was crazy, or if I had a legit health concern. You ask why I thought I could be crazy? Well, several doctors told me nothing was wrong. What does a young teen think when a doctor tells you nothing is wrong? That they cant find anything wrong with you? Do you believe the doctor like you were taught to your whole life? To trust them because doctors are supposed to be helping people, not telling them they are essentially crazy. I remember the chronic pain started about the same time I started puberty. I was maybe 11 or 12 years old. I was sitting in my 5th grade school classroom feeling like I had to pee really bad, but the problem was I had just gotten back from using the restroom. I still felt like I had to go, but at the same time it was painful. Some people would have thought, okay she must have a bladder infection. Well, I didn't. So what is causing this pain? I was too embarrassed to ask about it. And honestly, I don't think my parents would have listened to me if I brought it up. They would have believed the doctor as well. So in hindsight, it doesnt really matter if they had taken me to the doctor or not. It got bad enough I was sitting in the bathroom, in pain, for hours. I read the bottles near me, sometimes I took a book because I knew if I used the bathroom I would start to be in what felt like a bladder infection. I woke up in the middle of the night on a regular basis and got into the bathtub and cried for hours. The water would be cold, but I didn't care, the pain I felt was worse. I became extremely depressed. I guess that isn't surprising. When someone is in pain nearly all day and all night, and being told nothing is wrong with you, you start to think you are crazy. I cant explain how often I cried. I cried because my parents were not listening. I cried because the doctors who I used to trust were telling me I was insane and psychosomatic. I was put on all types of anti-depressants. They just messed me up further. I still today 20 years later, do not know what it feels like to be unmedicated. As time went on, the pain got worse. When I started to go into my mid teens my mother stopped going into the doctors office with me. She would give me a check and send me in by myself. I had no one to be my cheerleader, no one to believe me or help me find what was wrong with me. I felt like my mom gave up on me. In hindsight, I realized she was going through her own mental and emotional issues, so I forgave her. It still does not mean the insecurity i felt from being left on my own to fend for myself with a doctor who is starting to think I just want attention. I was told by a D.O. doctor once I just needed to try to eat more almonds. I need more omega fatty acids. At that point, I started to cry and she asked if I was on any anti-depressant medications. I remember looking up at her and saying I wasnt there for my depression. I was there to get help for the chronic pain I had. Along with the chronic pain of feeling like I had to pee, I started to feel sore all over my body. This started around 15 years old. I was trying to play soccer for my junior high, but I felt like I couldn't keep up. I felt unhealthy. I was trying to be normal, but in the end i was set aside because I was more of a hinderance for the team than a player who deserved to be on the field. I dont blame the coaches...i think one of the coaches could tell something was physically wrong, and it wasn't because I was unfit. It was something deeper in me causing me to not be able to play to my best potential. One morning on the way to school I felt the worst pain I had so far experienced. It was enough that my mom finally took me to the emergency room. I was in 8th grade, so I must have been around 15 years old. Because of the location of my pain, the doctor wanted to check to see if I had an UTI...negative. They had a female doctor come in and check everything female related with me. Nothing out of the ordinary there. Then, after I got dressed, a male doctor comes into the room. He sits down with me and starts asking if I was being hurt at home. My mom wasn't in the patient room at this point. All i could do was shake my head and quietly say "no". The truth is I was not being hurt at home, except the part about feeling like no one is listening to me, or believing something was wrong with my physically. I felt like I had no one on my side to help me make grown up decisions. But no, I wasnt being assaulted at home or felt scared at home. I always remember thinking the doctor didnt believe me. Afterall, the pain i was describing could pass as someone having been sexually assaulted. Along with my overall body pain. Of course, at the time I did not know these things.

Well, just as LDN started to help my body fatigue and pain, my TMJ started acting up again. Except this time it was with vengeance. I dont know exactly what started it. It could have been the molar extraction I had to get after a botched root canal. I remember a painful sudden crack/pop about a week ago. I remember shrieking with surprise and a sudden pain ripping towards my chin and forehead. The best way I can explain it is how a charley horse feels when you run, except its on the left side of my face causing my lip to droop and face swell. Is my jawline really gone? Or am I swollen??? Have I really gained enough weight to gain it under my jaw??? I can tell you it feels like a lump under my skin. Maybe my glands are not draining? Maybe my lymphnodes are swollen? Why is it tender to touch? Why is the left side of my face looking "puffy". I am hoping the oral surgeon specialist can get me in tomorrow afternoon. Crossing my fingers I am able to be helped. Sometimes I think I am not meant to be helped.