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04-03-2014, 01:51 AM   #61
ron50
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How does everyone manage their Spondylitis? I am suffering so much.
My Spondylitis was dxed by my rheumatologist. I had an Mri which showed a mess at the base of my spine. He muttered something about lars fractures and displacement and nerve entrapment on one side. I asked what I should do for it and he said see an orthopaedic specialist. I cannot afford the ones I have let alone the ones he suggests I see. Lasat one was a neurologist who charged me $500.00To tell me something I already knew ie I have neuropathy and he cannot help me. I am sorry you are in so much pain ,if I find anything that helps I will let you know,Hugs Ron.
04-03-2014, 06:12 PM   #62
carrollco
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My abuse was physical and mental so I freak if someone yells at me or criticizes me because that means hours and hours and hours --no sleep-- and hours of screaming and what not.

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Louann
First diagnosed 12/4/10
Humira 4/7/11 and lovin' it


Previous Meds:

Methotrexate--had kidney/liver damage
Lialda--allergic to aspirin--but didn't know until my Crohn's got much worse.
Prednisone--only when I have to!
04-03-2014, 06:30 PM   #63
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Stupid cell phone... OK so you other victims of abuse. You can and you will get better. Time has a way of softening the memories. I am old now so I speak the truth. However, to have lived through that then get Crohn's really sucks. But you can get through that too! And here's the trick. I stopped focusing on myself and started asking this question: What can I do to make someone elses life better? When you sign a publishing contract you have to agree to having a Facebook page, a blog, a website. I remember the first time a publisher said that to me. My nerves jumped outside my skin. I was a nervous wreck. I made some mistakes, dumb ones, but hey I am dealing with panic here. Eventually, I asked myself my question. Since I was clueless, no mentor for me, I started featuring other authors on my blog, then I started blogging weekly about Crohn's. One step at a time, one baby step at a time. I used my real name because I wanted to make sure I was not ashamed of who I am. Not abuse shame or Crohn's shame. I decided to OWN myself with all my quirks. You do this one baby step at a time and you walk through the panic and onto the otherside. It's not so bad over here. I still panic and I still scare easy. But I walk through it instead of allowing it to dictate to me.


04-03-2014, 09:59 PM   #64
Jennifer
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Definitely carrollco. When my panic attacks started they ruled my life. I would exit stores without making my purchase and sit in my car and wait for it to pass because I was afraid to drive home to my safe place. I missed school and missed out on a lot of things because I was afraid to drive for a while (the panic attacks started happening while I was driving). It continued to get worse even after moving back to my home town. I became home bound. Later I feared being alone, then I feared the hallway and bedroom (no easy escape route). I started becoming fearful of my own thoughts and imagined terrible monsters/demons and refused to look into mirrors because I was afraid I would see them standing behind me. I never saw anything but did start having sleep paralysis where I did see shadows and figures and people entering the room to get me and I couldn't move. I refused to shower unless my husband was home. Even then I took quick ones because I was afraid I was going to pass out. I was also afraid to be on the computer when I was alone in the house because I couldn't see behind me and was afraid to turn around. I'd basically back myself into a corner so I could see the whole room (watched a lot of TV).

I was physically abused as a child (slapped around (dad broke my nose), hit with any old object lying around (lamps, brushes whatever they could grab, thrown against the walls like a rag doll and one time dragged across the floor by my shirt which caused burns under my armpits (that's all I remember from that incident, my dad said he was trying to get my shirt off but I refused yet my sister remembers him being angry with me, grabbing my shirt and dragging me across the carpet then throwing me against the wall). I don't remember being sexually abused by anyone as a child but it is possible. My grandpa is a known child molester (the one I'm a caregiver for) and there was a short man from the church we went to who always creeped me out and I don't know why. We were also taken away from our parents because of the abuse for a year. Went into foster care first for a couple months and then into my grandparent's where we were beat with my grandpa's belt. I was around 3 years old when this took place so some sort of sexual abuse could have happened by anyone during that time but I simply don't remember yet I do know that my greatest fear has always been rape.

I went and got help by going to the county mental health department where they evaluated me and diagnosed me with Agoraphobia, depression and of course panic disorder. I was sent to an awesome psychologist who helped me not only talk about it freely but also taught me different coping tools for when then anxiety started so I could try to avoid a full blown panic attack. Distraction works best for me yet there are many other tools out there. I also take Klonopin twice a day now to help relax me. Antidepressants always made me too tired and unable to function so the benzos always worked better for me since anxiety and depression are related, treating one can help treat the other.

I'm still not better and maybe never will be 100%. Only way to do that is to completely forget what's happened and that's not possible but the anxiety, depression and fear can diminish tremendously with help over time. TIME is the main factor here. Everyone is different. It's been 4 years since my most extremely fearful time and now I'm able to walk around in my house without any problems. I'm able to relax. I still think about it from time to time but my husband's trick helped a bit. He said that if something scary invades my pleasant thoughts then I should crush them, banish them from my peaceful place. Personally I like to imagine stabbing them with a sword and seeing them disappear in the breeze but over time you think about these things less and less. Keeping busy with something else also helps a lot. Occupy your mind with something else so you don't dwell on the fear etc. Easier said than done but it takes practice, patience and time.
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Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
04-03-2014, 10:50 PM   #65
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My abuse was entirely psychological - my abuser was never in a state to be capable of physical abuse, or I have no doubt she would have tried that as well.

My mother was never a responsible parent. However, we lived next door to my grandparents when I was young, so it wasn't much of an issue - I walked to their house to eat. Although he lived with us, my dad was rarely an active parent as he arranged his work schedule to easily avoid my mother - he worked nights and slept during the days. When I was in fourth grade or so, my parents divorced. My brother decided my mother abused him physically (she didn't, although that's about all that can be said for her) and moved in with our other set of grandparents. My mother became depressed and was constantly agitated. I moved next door with my grandmother, and eventually, Grandmother convinced my mother to move in as well (she owned the house I grew up in as well, and if we all moved into her house, she could rent that one). About then is when my mother's drug addiction began.

I relied on my grandmother at this point and tried to avoid my mother as much as possible. A few years later, my grandmother died and my mom took another downward spiral. She was hardly ever conscious - I'd find her passed out on the floor on a regular basis, often with the pills she dropped scattered around her. She would take a few pills before driving me places - she would be fine when we got in the car, then a few miles down the road, she would start losing control of the car. This happened on a regular basis and I'm surprised I survived it. I was around thirteen at this point, and I felt as if there was nothing I could do when I was stuck in these situations (I didn't have a cell phone to call anyone to pick me up) so I gritted my teeth and woke her up every time she veered off the road. She was extremely agitated, especially at these times - she felt as if I were constantly criticizing her and took everything as a personal attack.

My grandmother had always kept her house immaculate, but my mother seemed to be intentionally trashing it. She's a hoarder and a generally filthy person. If I tried to clean something, she would trash it again when I went to school. The house wasn't fit for a human to live in. On top of that, the utilities were frequently cut off because she couldn't or just plain didn't pay the bills. She always laid her financial concerns on me - constantly telling me that she didn't know how she was going to make ends meet.

My father and my other grandparents knew the situation but pretended they didn't. My brother (who left before the real problems started) was too busy playing the victim to care what happened to me. I felt as if I were completely on my own - and I was.

This continued until I turned eighteen and moved out. I spent these years filled with an indescribable anger - it felt to me like my entire body was filled with fire. On one hand, I knew what she was doing was wrong, and that it was wrong for everyone else to ignore it - I knew I deserved better than that. On the other hand, I couldn't help but wonder - why was I not good enough? The problem began when my brother moved out and stopped talking to her, so obviously he was more important to her than I was (he was and still is the favorite - she never made any effort to hide that). I felt insignificant and embarrassed. I distanced myself from others because I was afraid they would find out about my mother.

I ignore her now. Her number is blocked in my phone. Her constant drug use has damaged her in irreparable ways. She's on the emotional level of a small child (telling her you're busy and can't talk on the phone or give her a ride somewhere sends her into a tantrum) and it's not healthy for me to deal with that. I can't deal with it, and I shouldn't have to. She says now that she's stopped (for my niece, she says), but all she's done is tone it down. Anytime she would talk to me, it would end up with her furious over some tiny thing - and when she's furious, it's a solid day or even two of angry texts. She'll say anything she can to hurt.

I got through those years by telling myself I didn't deserve it, even if I sometimes had trouble believing it. "You'll get out of here, and you'll show them all that you're better than this," was my constant mantra. I told myself that she would be sorry someday for what she did to me. I'm still waiting for that day, but it'll come.

So, that's the short version of things. I feel guilty for classifying that as abuse but I'm not sure what else to call it, either.
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04-03-2014, 11:02 PM   #66
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No I'd say that's abusive for sure and neglect, child endangerment etc. You could have been taken out of her custody as well if someone ever reported it. I'm sorry you went through all that but after meeting you, you are a very kind and caring Bear and I love you for it (not the abuse of course, no one deserves that).

I wasn't done, hit the wrong button. :P I can relate to the hoarding. Both my parents are hoarders and that's another one of the reasons why we were taken away. It wasn't just stuff, there was trash, it was dirty, moldy, bugs everywhere and just plain gross. Once we were placed back into our parents custody the house was inspected every now and then and my parents made us clean our room. We developed a method of holding onto the bed frame and pushed with our feet and slid all the toys, clothes and trash under our beds by gliding across the floor so it looked clean. Was weird seeing the floor.
04-03-2014, 11:03 PM   #67
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My mother was/is the same way - not just stuff, but trash. One of the biggest problems was dishes. She piled everything in the sink, and was apparently opposed to even rinsing a dish off. There was an entire summer that I ate nothing but pop-tarts because there were no dishes clean to cook with (I couldn't face that mess myself - it covered the counters, the table, and she even carried some into the basement shower), and the following school year, the only time I really ate was at school.
04-03-2014, 11:16 PM   #68
Jennifer
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Same here. No clean dishes. My mom would say, "don't use that, it needs to be bleached first." Well then do it already! As I became a teen I started drinking alcohol and came home one night drunk. Didn't want to wake the parents so I didn't turn on the light and was SUPER thirsty. My mom would sometimes make tea in water jugs and they'd either be in the cram packed fridge full of molding crap or on the jam packed pile on the table. So I grabbed this water jug that looked like tea. I gulped it. Turns out it was grease saved from and for... something. I can't remember if I vomited but I believe I just spit it out and hovered my face over the dirty dishes to get at that nasty tasting tap water directly from the faucet. So gross.

I must admit though that I do tend to hoard sometimes and I'm trying to work on it. My main issue is keeping up with the cleaning, especially the dishes. I did so much better when I lived in a place with a dishwasher. I miss having one.
04-03-2014, 11:17 PM   #69
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I must admit though that I do tend to hoard sometimes and I'm trying to work on it. My main issue is keeping up with the cleaning, especially the dishes. I did so much better when I lived in a place with a dishwasher. I miss having one.
I have the same exact problem.
04-04-2014, 01:13 AM   #70
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That's abuse, plain and simple Sarahbear. Anyone who tells you otherwise is trying to trivialize your experience.

My story is similar. My father was always an alcoholic, and a hardcore redneck. Half of his vests are covered in Confederate flags or eagles and he refers to the American Civil War as the "War of Northern Aggression". He loves hunting and drinking and that sort of thing. He had scraggly beard that looked like dead Spanish moss hanging off his face, that and his eyes are the only thing I can remember about him anymore.

I was quiet, sensitive, strange, and always described as a "a bit distant". Until the third grade I was thought to be seriously retarded because I couldn't read. Until then the abuse was mostly lowgrade, I was spanked from time to time. And while I would classify physical punishment as abuse it barely rates compared to what was to come.

It turns out I had a mild form of dyslexia called dysgraphia that interferes with my ability to read and write, this, along poor teaching had held me back. When things clicked with proper tutoring I suddenly went from being the slowest student in the class, my parents being told I'd have a life of remedial education, to being the smartest student in the room. I was in every accelerated student program possible within a few months. And that is when I heard the first heard the worst phrase you can ever tell your child, something that'd haunt me for the rest of my life, hearing it still makes me want to cry and brings all my bitterest memories to the surface. It would later go on to be one of the things the voices in my head would use to mock me the most.

"You have so much potential!"

My teachers beat me with this phrase. I was never a strong student. I may have had natural gifts but I was always easily distracted and never really motivated, I was more interested in videogames or cartoons and various things a ten year old kid would enjoy. My mother tried her best, but could never really instill a work ethic in me, soon she would join the chorus of my teachers and every adult around me.

"You have so much potential!"

"Why don't you just apply yourself?!"

"That could have been you getting that award, if you tried."

Moments like these defined the rest of my childhood.

All this just made my father hate me even more. I was never interested in hunting or his business or proper masculine pursuits. I loved the arts and sciences when I wasn't stuck in childish pursuits. I became a receptacle for all his frustrations. I was constantly yelled at, I still remember the worst tantrum he threw at me during my early childhood. He screamed at me about how I'd die under a bridge if I didn't learn how to work hard. I cried for the rest of the day.

My little sister made things even worse for me, as she grew it was obvious she had none of my issues. She was outgoing, cheerful, not gifted but a hard worker whose grades were always As and Bs. Even better she was a tomboy, a perfect child for my father. She was the blatant favorite.

By the time I finished middle school my parents had simply...given up on me. My mother doted on my little sister and my father took her hunting and taught her about all the things he valued. I was just a dirty family secret that happened to need to eat. I was never thrown out or starved, I was simply fed and taken to school. Otherwise the only attention I got was more yelling or beating from my father when another report card full of Ds and Fs came back from school.

"Why can't you be more like your sister?"

"Are you some dumb faggot?"

My entire life became hiding myself in fantasy and burying report cards. School was a place I went to get bullied by teachers as much as other students. Occasionally one tried to motivate me to do more, seeing an earnest intelligence that was curious, but they never really got through.
This pattern continued until the 12th grade, when the matter of my number of credits came up. There was no way I could graduate on time, I was enrolled in remedial courses, just like my parents were told I'd need when I was in the 2nd grade.

It was there a teacher finally got through to me. He was named Mr. Z. I found his class better then expected for a remedial course. He said I reminded him of someone, himself. We talked on and off after various classes and he outlined a simple course of action for me, the one he took to get through the school system and used to make it into college.

I'd drop out of high school and take my GED, then apply for the same sort of college he attended. A Great Books college. A Great Books school instead of focusing on the traditional college model used a curriculum based on reading and discussing the "great works" that make up the core of Western thought. Starting with the ancient Greeks in the first year and finishing with the likes of Freud and Nietzsche by the fourth. They were places where those who suffered serious issues in the normal school system were known to do well. The most famous of these schools would probably St. John's College of Maryland.

And so that's what I did. I dropped out of high school, took my GED and passed easily. I got my various reference letters, including one from Mr. Z, and sent them off. I was hopeful, Great Books colleges are not particularly large but are known for their high rates of acceptance since not many seek them out, St John's for example, has an acceptance rate in the 80% range.

I was rejected by every single one.

I was crushed, the few teachers who had supported my efforts at the time simply vanished off the face of the Earth. Around the same time, my father's alcoholism was escalating. He was furious almost every night, when my sister hit her teenage years she stopped being the perfect child for him and his rage at me intensified. It was another argument we having, not unlike the thousands we've had before. I called him an alcoholic piece of shit who hid behind a bottle and societies ideas about masculinity.

He replied with attempted murder.

He slammed me against a wall and tried to strangle me to death, staring at me with his cold steel blue eyes the whole time. The only thing that likely saved my life was my mother walking in on the incident in progress. After that his life almost entirely unraveled, my mother stopped talking to him and his marriage, already sick, withered and died. He fled the house, fearing I would press murder charges. My mother never let me and I regret it to this day.

After that my mother warmed to me when she realized we were like souls. Quiet people who enjoyed order and stability who didn't do well in modern society. Soon she was vomiting all her issues and frustrations on me. It was far too much for my already burned out emotions but I lived with her for another four years, doing nothing but listening to the sound my past made.

After that, my story continues as I've already told. I started having serious symptoms of psychotic illness, got on disability, discovered I was transgender and eventually moved out on my own. I can still hear the echoes of my childhood and teenage years in my ears every morning but I feel like I'm on the slow road to recovery. Maybe by the time I'm 30 I'll be a functional member of society.
04-04-2014, 09:58 AM   #71
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I'm practically crying while reading everyone's stories of childhood abuse. I just want to give everyone a big group hug!

Since this is the thread about having multiple illnesses, I'll start by saying I have some form of IBD (not fully diagnosed yet), some form of arthritis (also not fully diagnosed), GERD, and something called "focal nodular hyperplasia" which causes benign tumors on my liver.

As far as mental illnesses, I'm pretty sure I have OCD. My dad and grandma are hoarders and my grandma is also a compulsive hand-washer. Particularly as a child, every time I went to visit my grandma, all I ever heard from her was to wash my hands. "You're going outside? Wash your hands. You're coming back in? Wash your hands. You're going to eat? Wash your hands. You finished eating? Wash your hands." And so on. She used to have a huge house that was full of stuff that she hoarded over the years (no garbage thankfully, just tons of stuff). My little cousin went up to my grandma one day and said, "Grandma, when you die, am I going to have to clean all this stuff out of your house?" My grandma got a mental image of a little child having to clean her mountains of stuff, and that actually got her to purge a lot of it. My dad is getting bad though with his hoarding, he's got paths through the piles of stuff. He has thousands of VHS tapes and zillions of CDs. Lately he does this thing where he'll go on itunes and download a bunch of random podcasts, then burn them onto CDs. Sometimes he gives me CDs of podcasts - they're old and not relevant and not even that interesting (he gave me one about the royal wedding, I don't care and wasn't that like a couple years ago already?). I don't really understand the compulsion to do that kind of thing - but like some others have said, I do feel the tendency to hoard anyway. I tend to hoard things that appeal to me, things like nail polish, yarn, workout clothes, and especially food. Sometimes I freak out and think I'm turning into my dad & grandma, and I'll purge a bunch of stuff. But yes, I'm pretty much a hoarder at heart too.

I didn't experience abuse like others in this thread have talked about. I can relate to some of what you guys said, though. Like SarahBear, I was not the favorite. Well, I was for the first 5.5 years of my life until my brother was born. I was an "oopsie" baby and I came out all wrong - mousy, shy, bookish, weird, a girl. My brother was planned and he came out just right - blonde haired, blue eyed, athletic, charismatic, outgoing, male. I was ignored from the moment he was born. Whenever I watch the Breakfast Club, I always relate so much to Ally Sheedy's character, particularly the part where they ask what her parents did to her and she said, "They ignore me." My parents ignored me - I had headlice at age 13 and they didn't notice. I was anorexic from about ages 16 thru 19, I got frighteningly noticeably thin, but they didn't notice. I was suicidally depressed at about age 12 and actually put a razor to my wrist (couldn't cut myself though) and I spent the vast majority of my time in my room by myself, but they didn't seem to notice that either. Basically I needed help but nobody even recognized that, let alone got me any help, so I learned how to help myself and I somehow got through it all relatively unscathed (at least physically).

Oh, and the other thing my parents didn't seem to notice is my other probable undiagnosed illness - I think I have Asperger's. I fit pretty much all the criteria, I was a super bright child and I tend to obsess on certain subjects, but I was also weird also and never fit in or knew how to talk to other children (as an adult I've sort of semi-mastered small talk - "Wow, this is some crazy weather we're having!" and I've learned that when people ask, "How are you?" I should say "fine, and yourself?" rather than just saying "fine" sullenly and shutting down the conversation - I'm still very socially awkward though and have a really hard time with eye contact). As a toddler I tested off the charts for intelligence (when shown a picture of a dog, most 18 month olds say doggie or woof woof, whereas I identified the breed and said "collie"), but there was always something a little bit "off" about me too, yet my parents never had me tested for anything. As an adult, I have googled and taken online tests and that kind of thing, and there seems to be a high likelihood that I'm an Aspie. I even have some of the lesser-known Aspie-esque quirks - I have some hypermobile joints (hypermobility is apparently really common in Aspies) and I hate hate hate tags in my clothing (also super common with Aspies & Autistics), I'm very clumsy, etc. Being an Aspie could explain some of my digestive issues too, as tummy troubles are also very common with Aspies & Autistics. I'm terrified to be tested for it, though - if I am an Aspie, then what? And if I'm not, then am I just a really awkward quirky jerk? So I still haven't worked up the courage to ask my doctor to be tested for Asperger's, as I'm not sure I want to know for sure or what I'll be able to do with a diagnosis like that, and not having Asperger's wouldn't even give me an exuse then for why I'm weird and shy and don't like talking to people.
04-04-2014, 10:38 AM   #72
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So many things I'd like to say but it so hard to put in the expression that's required.

I too would like to give everyone a hug.

We all grew up different and had different challenges and fortunately or unfortunately continue to deal with physical/mental challenges. For me I find my challenges to be fortunate and I would not trade any of them for what some would call a better life. My issues and challenges are what define me as an individual.

I take inspiration from two vastly different places. During my months of hospital stays I've always gone to the pediatric units to volunteer my time even when I felt like shit. The strength and general positivity these little kids exhibit while fighting rare disease and cancer is unbelievable. I also look to the animal kingdom and specifically dogs but really this is true in all animals. No matter the obstacle they work through it and live. Remove two legs from a dog, any of them, and the dog will learn to walk again. They just keep going.

We get the cards we get and it's up to us to make the most of them. Find things that make YOU happy and DO THEM.

As someone who has always been quiet, shy, introverted, afraid of rejection, afraid to talk to people or look them in the eyes, afraid of disappointing people I can now say I've found it FAR easier to just be happy then to worry about all of those things.

This is a rant and may make little sense to anyone but to me. Living a life where you wonder if today is the last day causes you to refocus and just live for the now. It also makes you a little crazy which I'm ok with

Sorry



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Now go LIVE IT!
04-04-2014, 08:47 PM   #73
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I have the exact same obsession with nail polish Cat! It's just so fun to have all these pretty pretty colors. My favorites are really nice blues with a cute shimmer and deep purples, what are yours?

Last edited by Orchid; 04-04-2014 at 09:18 PM.
04-04-2014, 09:52 PM   #74
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I have the exact same obsession with nail polish Cat! It's just so fun to have all these pretty pretty colors. My favorites are really nice blues with a cute shimmer and deep purples, what are yours?
It's kind of funny actually, when I first got sick I got really depressed, and any time I had to go to the doctor or have a test done, I'd buy myself a bottle of nail polish to cheer myself up - it was inexpensive, pretty, and gave me a little bit of happiness in an otherwise crappy situation. So as a result of many doctor visits and tests, I amassed a huge amount of nail polish very quickly! As for colors, I prefer blue but I'm a sucker for pretty much anything sparkly. I have 7 bottles of nail polish next to my computer as I type this and they're all sparkly (I line them up in front of my pill bottles so that I see pretty things before I see my meds) - in front of me right now are sparkly silver, sparkly silver & blue, sparkly blue with a bit of orange mixed in, sparkly fuchsia, sparkly purple, sparkly turquoise, and sparkly multi-color. I apparently need to own all the sparklies.
04-04-2014, 10:36 PM   #75
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Well of course you do, they're adorable! Right now my favorite is this sparkly iridescent sea green polish I have. It goes on terrible though! So I mostly just look at it.
04-08-2014, 04:17 AM   #76
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I just wanted to say, that you are all so brave to share your stories like that! It really touched me, and I cant imagine what it must have been like for you all, you are truely inspirational!

I wasn't abused as a child, I'm lucky to come from a really supportive, tight-knit family, but I did suffer relationship abuse for around a year and a half (started age 17). It started off as smaller stuff, like aggressive shouting, backing me into corners, threats etc, and it was so gradual that I don't think I noticed a change for a long time - when it felt too late to do anything. Gradually, things became physical, starting with a slap or a shove, growing to neck grabbing etc.. and eventually sexual. I still can't talk about it in much detail. I jump when men raise their voices, and can't stand people touching my neck or grabbing my wrists, I also struggle being in large crowds and still shake when men I don't know approach me when I'm alone. I have, however, managed to get into a strong, healthy relationship with someone who is incredibly patient and understanding.

I want to thank you so much for sharing your stories, what I went through was tough, but it seems like nothing compared to what you guys had to deal with, I can't imagine what its like be treated like that by your own family you are all so strong, and take it from me, you are all amazing people. I hope that you all have people who show you that in your lives. You are proving those people who put you down wrong every day. Don't stop fighting.
__________________


Nicola
coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
04-08-2014, 04:17 PM   #77
carrollco
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Location: Grass Valley, California

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Oh my. Well, my dad died when I was 5. I was in the house when it happened. My brother says he was shot, I was just a witness to the bloody bathroom and have no recollection of anything else. By this time, I was partially deaf but no one noticed. I read lips quite well. My dad was mixed up with the Chicago mob. They always promised my mom they would take care of her if anything happened. They didn't and my mother became a complete alcoholic. My deafness was discovered in the 2nd grade by the school and surgery pretty much corrected it. Scared the hell out of me. Suddenly, I could hear. I taught myself everything, became pregnant at 14 and dropped out of school. I married my daughter's father and the marriage has lasted to this day. 44 years in October. I was physically abused by a local businessman and when my mother found out I was told to keep my mouth shut. I was 7. I never ate a fresh vegetable until my husband's parents introduced me to them. The literally bought me from my mother for cold hard cash so I could marry my husband. Disgusting. I was always curious and I would red anything I could get my hands on. Including advertisements. Lol We both went back to school, worked hard, and graduated. I eventually became a CEO until the panic I had fought so hard to overcome disabled me. Then Crohn's entered my life. So, I became a writer. We had three children and now we have 7 grandchildren. It took me a long time to heal and I believe that no matter how old we get we carry scars. Some are thicker than others. Now I have to decide to whether or not to hit the send button.

04-08-2014, 04:27 PM   #78
carrollco
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I hate cell phones. The decision was taken out of my hands.



04-09-2014, 04:16 PM   #79
ron50
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Location: nambour, Queensland, Australia

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Saw my nephrologist yesterday. Three months ago when I started on cyclosporine my protein loss was around 7 grams a day. My response to cyclosporine has been excellent and I have already dropped to around 2 grams loss a day. I spoke to him about my liver function results and he agrees that I have been suffering mild but chronic auto-immune hepatitis for quite some time. Nearly all of my elevated liver functions are back in the black. I saw my gp the same morning . He has referred me to a podiatrist. My spondylitis is getting worse . My right shoe (I can only wear Dunlop oc volleys because of neuropathy) has worn out on the outside of the shoe above the sole so I am literally walking on the side of my left foot.He hopes the podiatrist can make some inserts to straighten my foot and take some strain of my back and hips. Ron.
04-11-2014, 03:36 AM   #80
Banshee
 
Join Date: Jan 2014
Location: Alabama

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Hi,

My father have hade IBD for a long time(probably 20 years), today he is 55 years old.

He was going to regular checkups(endoscopy) every year and from time to time thay found infection and polyps, the polyps was burned away. Thay was never sure if it was Crohn´s or Ulcerative colitis, thay did never find any trace in the small intestine.

He have been on diffrent IBD medicins like cortisone and asacol.

For littel more then a year ago he started taking blood pressure medecin. About 1/2 year later he began to get problems in his body, he was vary tired and got pain all over the body(Most of the pain was in armpits). There was also a sign in the blood test that he got some kind of infection but thay did not find anything.

He hade hade problem with the prostate before and was thinking that this might be the same but more seriously. Even if the prostata was slitly bigger(felt like sitting on tennis ball) they did not think that this was the problem.

He was on diffrent antibiotics but nothing helped.

a couple of month later thay did CT scan and found a black area on the colon. The followed up with a endoscopy and found cancer!

A operations was done where thay removed the entire colon(removed as many glands as possible that later showed signs of cancer). This was a hard blow to his psyche, he become depressed, most about the bag on the stomack.

He was set on cytotoxin to remove any cancer that might be left in his body.

The problem is that his symtoms : vary tired and pain in body(sometimes like needles) is still there? He have to rest alot.

Yes he got some extra symtoms from the cytotoxin but the wors part is still the former symtoms(vary tired, pain in body). Thanks to this he cant do much and this is also vary frustrating for him(he use to be active).

He have tried to go back to work but he can only be there for about an hour.

Cancer in the colon is a big thing, but it would have been ALOT easier to handle if he did not have this other symtoms. The doctors do not find what could cause these problems.

Have anyone of you heard of these symtoms? Maybe anyone here knows what it could be?
04-20-2014, 08:21 AM   #81
Shortee
 
Join Date: Apr 2014
Location: Gloucester, United Kingdom

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Hi Everyone,

I'm a newbie and was diagnosed with Crohns this week but I think that I've had it for years. I also suffer with Psoriatic Arthritis and depression. Over the last 8 years I have had a pulmonary embolus, 18 months worth of surgery for rectal abscesses/fistulas, gallbladder removal and umbilical hernia repair.

I'm really struggling to get my head around it all and although I have a fab GP and several consultants everything takes so long to get answer too.

My Crohns consultant wants me to start a 3 month course of steroids but I have managed to delay this due to my daughter getting married next month.

I'm already taking Sulfasalazine and Duloxetine.... And know this is only the start. :
05-01-2014, 06:07 PM   #82
DougUte
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Location: Kaysville, Utah

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Ok, I'll join this group. Here is my illness list.

1. Crohn's - this is at the top of my list as I find it the most life altering.

2. Essential Tremor - My hands, legs, and sometimes my head, shake. For no apparent reason. Makes me look like I'm nervous. I include this link because most people have never heard of it. http://en.wikipedia.org/wiki/Essential_tremor

3. Depression - CD and ET are enough to cause this!

4. Sleep Apnea

5. Hypertension.

5. Psoriasis (very minor case)
__________________
Surgery Oct 12, 2010

Crohns Medicines:
Started Humira June 22nd, 2011
Increased to weekly injections on November 1st, 2016
Due to the insurance company, Humira ended on January 31, 2017.
Started Entyvio February 9th, 2017
Loperamide 3 capsules twice a day
Vitamin B6, B12, Folic Acid
Vitamin D3 10000 I.U.
Nature Made Multivitamin

Last edited by DougUte; 05-02-2014 at 02:14 PM.
05-01-2014, 06:14 PM   #83
theOcean
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Location: Toronto, ON, Canada

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Guess I might as well join here, too. I have Crohn's Disease, Restless Leg Syndrome, Delayed Sleep-Phase Syndrome, Insomnia, Social Anxiety, and Eczema/Psoriasis. Fun stuff. Also tentative PTSD diagnosis.
__________________
Diagnosis: Fistulizing Crohn's, 2011 (originally Dx as Ulcerative Pancolitis)
Past Medication: Pentasa, Remicade, Prednisone, Imuran
Current Medication: Humira (biweekly), 100mg 6mp
Unrelated Medication: 36mg Concerta, 75mg Pregabalin
Currently: In remission!
05-01-2014, 06:20 PM   #84
DougUte
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Oh, I nearly forgot.... I am being tested for Diabetes this week.
05-02-2014, 04:17 AM   #85
pink&green
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Location: Oklahoma

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Count us in.....
The last two months have been crazy hubby has been diagnosed with severe asthma (given inhaler)bronchitis, COPD( never smoked a day in his life) did work 24 yrs in plants though and sleep apnea. He also has been diagnosed with kidney problems left kidney has stone right kidney has mass we follow up with urologist today about mass in right kidney, over active bladder. Arthritis in knee, severe joint point and high blood pressure.
__________________
Hubby Diagnosed 12/15/90
1/3 colon removed
12 inches of small intestine removed
Appendix removed
2007 Hemorrhoids removed
2006 resection:
2005 first perianal fistula(removed 3x & lanced still keep coming back)
2014 partial nephrectomy (stage1)
Previously medications:Humira-anaphylaxis reaction, Remicade, Cimzia, Entyvio
Current medications:
B-12, 6mp, flagyl, prednisone,
Tramadol(fistula & joint pain)

LeeLee
05-02-2014, 04:29 AM   #86
theOcean
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Oh goodness Good luck to your husband -- I hope he's able to get treatment to get some of these things resolved. I've heard how incredibly painful kidney stones can be.

Has he had any luck treating his sleep apnea? My grandmother suffers from it as well.
05-02-2014, 04:38 AM   #87
pink&green
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Thank you Ocean, right mow he is doing the testing to see how sever his sleep apnea is there monitoring his sleep with machine that he wears at night. I notice since his breathing treatments and daily inhaler his snoring is a little better can finally get some sleep lol. His Pulmonary Dr thinks once they get his asthma/emphysema under control that should help with his apnea.
05-02-2014, 04:44 AM   #88
theOcean
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I just had a sleep study done in April, so I can imagine how that's probably going. Hopefully you get the results soon!

And that's good that the inhaler and treatments are helping. My grandmother's was severe and she was told to use a machine to help her breathe at night, but she's been adamant about not using it. "I'd rather die in my sleep!" (She's very melodramatic.)
05-08-2014, 06:12 AM   #89
Guest323244
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Join Date: Aug 2011
I have several diagnoses, other than Crohns, Aspergers probably being the most damaging, as I believe it has led to me developing a couple of other conditions.
05-08-2014, 08:33 AM   #90
DougUte
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Oh, I nearly forgot.... I am being tested for Diabetes this week.
Tests came back negative (Yeah!). But I will get tested again in 6 months.
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