You all know who you are.... If you have heard the screams, the questionable inappropriate laughter, the yells out of agony and pain, the collapsing with fatigue, the violent seizures, tremmors joints locking, slurring and slow speech, if you've put your arm out for me to hold on to or if you've stood behind to push me you are a friend. If you've listen to me vent with out judgement, if you've sat in silent with me just so I'm not all alone. You know who you are, you are my friend!
Yup I am unsure how to let people know that I have a "blog".... Now that I just don't write excessively long facebook statuses, that this is the reason I no longer update the Go FundMe page (maybe I'll strike it big with a blog, rather than a donation) cause god knows even though I say we gotta win the lottery- first that would consist of me buying a ticket, and when you ain't got money you don't waste it) there's more chance in me being cured from Sjogrens than in me winning anything that actually costs money to win.
A close friend got ahold of me last night. I'd been trying to reach her for awhile now. she had been heavy in my thoughts- but Not in "I haven't heard and that was making me feel panicked" at all, not really even worried. Just very much in my thoughts, like an urge......Like I was being pushed. Then she pops on messenger (hadn't seen her on in months) and I didn't beat around the bush, I didn't sugar coat it, (as all my younger friends that know me- (or anyone that's been my friend in the last 14 years) I will gladly listen, not judge, love and respect, but I will also give out my 2cents and that's that, take me as I am but I will call you out so don't try lying cause that's not gonna get you anywhere with me. The Friend needed to hear from me too. It's hard fighting demons if they are demons you are fighting alone. If Prince Charming can't fight them of with a sword. If mommy can't tuck you in tell you a story, give you a good night kiss and have it all be better. It's hard fighting demons that doctors can't fight for you either. A fight that daddy can't slam the door in the face and refuse you to visit again. It's there and you may be doing EVERYTHING possible it seems and you can't get the funk off. Mental illness is just one more invisible illness that so many don't understand. Ok begin rant--------I understand invisible disease oh too well, sometimes you just wanna talk and be heard! Actually understood, not told that you should try this new diet/exercise/drug regimen/topical treatment/more sleep/different pillow/vitamin/get more sunshine ect ect Because someone they knew had_____ and they got better. Don't you think we have tried all those things, and if they worked wouldn't our 20+ specialist know that. And if you actually took a minute to understand my diagnosis you would know that ____ is non-treatable & non-cureable. . FACT it's not that I "want" this or an attitude will heel me. Ok rend rant!----- She told me I was a genius and she loved me...................I would hardly call myself a genius, all I typed was for her to get writing again. I told her to let the words out like gas. Let it out like a F%^#£>g FART!!!! Let the words just flow who cares what it's about, who cares who reads it, or if anyone reads it. Just write it, get it out, let it out like its TOXIC. Release and get that gross stuff you are feeling out any way you can, think of it as writing vomit and you've had way too many margaritas. If you go to bed now youre just gonna get the spins and feel like shit. Go puke and feel better, all you girls know this don't get mad and start saying I'm encouraging eating disorders I'm just giving an example (and my brains too tired to come up with a different on-see not a genius, just a sick girl) go throw up your words, start writing again like its toxic that needs to be be sprung. See totally not genius. But I guess that's what she needed. It was nice to not write about me for once, maybe I should give out more shitty advice;) Hey friend< I'm watching, waiting to read some juicy vomit. Xo Ilana Jacqueline Become a fanFreelance writer, patient advocate
5 Ways You're Not 'Living' With Chronic IllnessPosted: 06/24/2014 7:59 am EDT Updated: 08/24/2014 5:59 am EDT A fine line, ladies and gentleman, its what stands between living with chronic illness and being alive with chronic illness. I've straddled it a few times, but I've figured out some of what on the other side and here's what I know: 1. You're not living with a chronic illness if you're hunting for the why full time. Is it because of a parasite? A bacteria? A cancer? Is it because you wore that blue dress last Tuesday? Is it because you stuck gum in someone else's hair that one time in second grade? There are an infinite list of possibilities as to why you could be sick. But after a while, and at least for a while, you've got to take a break from the endless hunt for answers and ask yourself, "How am I going to handle living with my disease today?" There has to be breaks, balance, within the search for answers. You can't just live going from doctor to doctor. You have to even out the space in between with friends and work and family. Because you can't hunt, you can't search, you can't question, and you can't get an answer for any of the whys in life until you've mastered feeding yourself, moving yourself, balancing your work, relationships and symptoms at the same time. I mean, you can throw all of those things out the window and just hunt while you lay in bed dying. But we don't call that living. 2. You are not living with chronic illness if you're not working. Don't panic. I'm not living under a rock, I know lots of people with chronic illness can't work conventional jobs. So I don't mean working in the 9-to-5 sense. I mean working in the "I have a goal" sense. Like my goal is to get enough documentation to get disability. Or my goal is to raise my kids as best I can despite my symptoms. Or my goal is to focus on my physical therapy so I can become more mobile each day. Or my goal is to find ways to work from home. Working is purpose. Do you have it? 3. You're not living with chronic illness if you're hating yourself. Sure, it's super easy to slap a "defect" sticker on your chest and go cry in the corner. Hating yourself is about as natural as all the other symptoms of chronic illness -- weight gain, constant pain, fatigue -- but this is (maybe) one of the only symptoms you can wake up and shake off every day. Go to therapy. Learn to cope a little more every day. Making peace with your disease is something you have to do because... 4. You're not living with chronic illness if you're fighting it. Can we clarify something here for the general population? Fibromyalgia is not part of the WWF. Chronic illness is not cancer. You don't "fight" it. You don't "beat" it. You don't make a voodoo doll out of it and start stabbing it with acupuncture needles. In the same way we don't use the word "cure" to mean "treat" we can't use the word "fight" to mean "deal with." Chronic Illness is:
5. You're not living with chronic illness if you are not moving. We all linger in stagnation for a while. We get stuck in the mud. Blindsided by an unexpected diagnosis. We let the moment we need to absorb, absorb us. Life with chronic illness is just like any other -- a life full of obstacles. With pain, illness, exhaustion -- it's easy to sit down for a while and rest your body. It's easy to lay down and not get back up. But if you're not moving, you're not living. So even when the obstacles become too great, the treatment stops working, the doctors stop telling you the good news, even when you lose support, you lose sight of what you're moving towards -- you keep moving. The Brighter Side of Living With Chronic Illness: 6 Amazing Things You Know Better Than Most Lottie V. Ryan 10/01/14 08:21 AM ET The diagnosis of any chronic illness comes with much you wish you didn't have to carry, and suffer with, for the rest of your life. You learn the scales of pain, you learn the bureaucracy of the health care system, you learn to grieve for abilities and opportunities lost, and so much more. I know this; I am living with chronic illness too. Yet all is not lost. Your chronic illness also teaches you many great things that offer enormous reward in life, and sometimes it's good to take a moment to acknowledge this brighter side of your existence. 1. True Love If it's there you've likely discovered the meaning of true love. When your husband changes your dressings, or ileostomy bag, or your wife happily fetches your painkillers in the middle of the night. When your child hugs you big and hard yet softly and gently to avoid your pain, when your mom tells you she loves you even though you weren't able to spend time with her yet again. When someone looks into your eyes outside the OR and says "You will be okay, I love you." 2. Compassion Living with an invisible illness has taught you that not all suffering is visible or obvious. You don't judge when the man doesn't offer you his seat on the train, because perhaps, despite appearances, he has Rheumatoid Arthritis and desperately needs to sit down. You smile and send the woman who asks to jump the line in the ladies restroom forward, as despite appearances you know that she might have an IBD, and her need for the bathroom is desperate. You don't comment when a person walks from their car in the disabled parking space, because you know that despite the fact she is seemingly walking well now, her chronic fatigue means that she will struggle to make it back to her car later. That's compassion. 3. The Value of Time As you sit in a doctor's surgery for the third time this week, listening to the clock ticking the seconds away on the wall, you understand time. You recognize the minutes you lose sitting in waiting rooms, driving to appointments, and laying in bed feeling too much pain to move. You also recognize the minutes you feel well enough to leave your bed, when you're simply sat in peace drinking a cup of tea, or you're able to take a walk with a friend. You know how precious time is and you don't waste it. 4. Community is Important You need your community, and so you build a community, whether you realize it or not. When suffering with a chronic illness you build a community, you give to your community and you actually, often give your community purpose as it bonds through your need for support. When your neighbor knocks on your door with a meal to save you the effort of cooking. When your friend calls by to take your kids out to play even though she has her hands full with her own children. When your elderly neighbor drops by with groceries, because despite his own struggles, he knows you need help. In return, when you're well enough you don't hesitate to contribute to your community in thanks. 5. You Recognize The Beauty in the Little Things Your heightened senses, because of pain and difficult symptoms, mean you no longer passively interact with anything. You're sick and so often suffering, so you know darkness, which also means that you bathe in the light of anything beautiful. You notice the blooming flowers as you drag yourself around the block for a painful walk. You drink in the lyrics of the music you hear, basking in their tone and meaning. You acknowledge a child's delightful giggle as they look in awe at the bird flying in the sky. You see the beauty all around you. 6. Gratitude You understand what it means to truly, heart deeply be grateful for every little thing. You're grateful for the doctors and nurses that help you maintain your quality of life and stay alive. You're grateful for the moments you spend with your family doing ordinary things. You're grateful for the Internet that allows you to stay connected despite often being housebound. You're grateful for your children's teachers who care for them with patience and compassion at times when your pain means you struggle. You're grateful for the friends who take the time to love and care for you despite your frequent inability to show up. You are grateful you are breathing. Lottie has suffered with chronic illness and daily pain for the last 17 years. She is a JPoucher as a result of Ulcerative Colitis, and has Fibromyalgia, Chronic Migraines, GERD and Obstructive Sleep Apnea. You can find her at www.lottieryan.com supporting women with chronic illness to create a life you love despite it all. It doesn't take much, outta the whole damn day and what do I decide to put to words- the most random post on Facebook. Something that has nothing to do with anything. Something that doesn't relate to my life in any way shape or form. Something that I hold no emotion to, well besides some laughter from the light hearted comments. By filling my mind with utterly useless material and trying to waste the time away I tend not to think to seriously. I forget about all the changes for a while. It's kinda like dreaming with your eyes open. (after fighting with insomnia for years my dreams are only day-dreams of a wondering mind) so many thanks to all you facebook nonsense posters, you entertainment link posters (and remember it can't be too intense or long or I can't follow), you picture posting, keeping it simple and engaging- even though you have no idea and think it's all a waste of time, time is all I got. Your posts/pictures are my outlet to what used to be a very active life. I am living through you.
Friend "L" I miss your beautiful energy, you win the award tonight!!! If you can capture an image of a girlie (head full fledged nose in a book) reading while crossing a main intersection. And pull together a string of laugh till it hurts comments, you will be entered as tomorrow's winner:) reading while walking---kicking it old Skool. Before there was texting and walking. seriously I want to know- what's important to you today? Is it Renee Zellweger's new face? Apparently that's like HUGE world news to most today, like on every single channel as a headline! News worthy enough to be on every social media, internet news forum and tv channel. News worthy enough to bump real world, actual serious life threatening, life changing events down a notch so we can give the topic time to discuss wether or not she should or should not have transformed her face. Who she looks like now (cause it's not herself) and how everyone should or should not be cyber bulling her. Maybe the real world stopped spinning today and there was no other news.......... Was that it is that what we've dropped to? Did the starving all get full? The diseased/ill& sick all get cured? The evil all turn good? Did all of the fighting.- disagreeing/arguing/battling and wars finally end? Did the economy turn around and everyone stop blaming their mis fortune on others? I guess today was an awesome day cause the normal news was put behind Renee Zellweger's face. Maybe she can make another Bridget Diary movie now that she's got her name out there again, but she won't be able to make that pouty lip duck face and you might think she's someone else.
Real work news. Some things I'm unsure of. But I am by NO means an expert. When I was a kid we drank water out of the hose In the summer and stayed outside till our mom yelled for us to come in. I made the best forts and hideaways and had an imagination my siblings can testify I entertained all day long. Even In the winter we would have to practically be drug in by our frozen feet and icicle noses. Tunnels so long and deep it was a differant demention. Riding our bikes on a dusty trail 7 miles in the heat was nothing unheard of to go to the library and check out FREE books and earn a pencil in the summer book club. And riding bike home with only the THERMOS water bottle I brought with was the only thing I knew of. The thought to ask for money to go to a restaurant or gas station to buy a sugar filled drink or treat would have never of even crossed my mind. I had a wonderful healthy carefree childhood, lots of outside germs, fresh air and exercise. We didn't have our face burried in electronics, and asking our parents to take us places and spend money on us. I thought you only did stuff out of the ordinary on yearly family vacations and shopping for clothes was at back to school and spring. If I was a kid or a teen now I would be stressed out. I think it would almost be harder to be them than it is us. Look what they are competing against! Instead of me rambling on im gonna get to my point. Kids don't ask for what they don't know of or already expect. Do you think a child living in a homeless shelter asks their mom for money to go to such and such after blankety blank lessons for a treat. Highly doubt it, cause that child isn't taking special classes/lessons/ever gone out for treats. Life used to be simpler..... I see/hear parents (MYSELF ADMITTING almost and sometimes falling into a trap~ trying to open my own Sjogrens damaged eyes to be more aware)blaming the child. Why is it the child's fault he asks for a candy bar every single day you stop and get gas, the newest video game upon releaseal, a pair of brand new nike shoes when the treads aren't even worn on the last pair but he likes the "new color", a brand new bike just cause his friend has that many gears why shouldn't he. You've given in BEFORE obviously to these requests, otherwise he wouldn't be asking (demanding) again. Otherwise he would know that his Nike's are brand new still and he shouldn't be asking until next back to school time? He should wait for his birthday in a month for the video game?He's only had his bike a year, come on you can wait a little longer, damit why don't you believe in Santa anymore, everything is so stinking expensive!!!! What I'm trying to convey children don't know unless they have already seen it or heard it. This rule goes for everything in life, a child isn't born with hate, seeing color, or judgmental to who one chooses to have a relationship with. A child learns this~ they imitate what they see/hear. Most everyone knows this, I just don't understand why we as parents aren't more cautious. We are molding them. One of my ultimate favor Quotes "if you can be anything, be happy" The Go FundMe page has a lot more writing going a year back. Slowly I'm going to figure out how to move my story over in a file. But my fingers don't work exactly how my brain directs them. ONE of the reasons I no longer own a restaurant and cut vegetables. That and I wouldn't feel if I cut off a finger, oh and blood/bone wouldn't taste good/be profitable for business. A year ago I'd never heard of Sjögren's syndrome. And then I had only heard "it being that disease the famous tennis player has, and you get dry yes and mouth", I was like what the hell are you guys making such a big deal for......? You cut and biopsied a big chunk of my lip out (which I STILL to this day have scar tissue and no feeling) to diagnose me with a petty disease dealing with dryness, I've got a lot bigger issues at hand~let's discharge me from this one and add it to the list. Not those exact words but you get it. Little did I know the rheumatologist back near home was waiting for these results to go with the anti-nuclear antibody (ANA) that's always positive but specialist have a hard time agreeing what to diagnose me with. (With the help from the UofM finally slicing me, there's no more arguing or playing the he said, she said my doctors smarter than yours that I can't even understand when they talk and I need an interpreter!) Hence many many many years have now been wasted and spending the last 4 months trying to treat inflammation that's sadly way beyond treatable, it's no longer active.
I'm gonna try to use my head, gonna try to only talk about one disease per post. I'm gonna try to separate things even though they are actually wound like a web so tight together in real life that it would never break free. Like that stupid delicate super thin gold chain necklace you have that has 23 kinks in it and 14 nots and you know if you mess with it it's as good as gone. Just don't disturb it too much. Oh by the way I get distracted easily and as you know it's just me and this pad, that's why I don't function face to face or on phone anyone. I'm all over the place and no where at the same time. Treading water stuck kicking up sand. Sjögren's syndrome is a chronic autoimmune disease. I have secondary Sjögren’s Sjogrens, that occurs when another connective tissue disease is present (but remember only one disease a post Cari_K.I.S.S.=(keep it simple stupid- what teacher taught me that.?? It's been driving me nuts all week_ see back on track) Sjögren's syndrome may cause skin, nose, eye, mouth dryness and may affect other organs of the body, including the kidneys, blood vessels, pancreas liver, heart, lungs, peripheral nervous system (distal axonal sensorimotor neuropathy) and brain. There is neither a known cure for Sjögren's syndrome nor a specific treatment. Non-steroidal anti-inflammatory drugs are used to treat musculoskeletal symptoms but because of such severe complications, corticosteroids and immunosuppressive drugs must be prescribed. After my next batch of testing treatment will be IVIG(intravenous immunoglobulin) infusions. Besides all the regular specialists I get drug around to we have to squeeze in a specialized dentist and eye doctor every 4 weeks for the rapid changes! Sjögren's can damage vital organs of the body with symptoms that may plateau or worsen, or go into remission as with other autoimmune diseases. So when you see me always sipping from a hot thermos it's not to look fashionable, it's to keep my esophagus open. When I say my heart hurts it's not because someone said something mean to me, it's because it's short on all it's fluid and I feel pressure same as EVERY single joint of my body. I'm just like a tin man (but better looking) I've got no lube in between my joints anymore. So maybe ya learned something, not everybody's Sjogrens is JUST dry eyes and dry mouth. When the doctors asked why I never told them/reported/complained about such sever symptoms, I said are you kidding me, my other issues (what I thought) were way more important . Why would I complain about the small stuff, that's like saying there's whipped topping on my coffee and I can't have dairy, hmmmm scrape it off, no need to complain, just put some eye. Drops in and move on. Little did I know what was internally going on. "I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel." -Maya Angelou
So I spend a TON of much limited brain power building a blog, then I spend DAYS not telling anyone I can't remember for the life of me how to log back in or post as myself on it..... Sometimes my mushy brain is fun and we can laugh it off, like oh mommys putting the milk on the cupboard/cereal in the frige type way but sometimes (mostly always if you don't want me to sugar coat it) it sucks being in a confused state of mind. Somedays it's as if you are sitting outside yourself watching a movie of your life right before you, too hard to distinguish dreams from reality. Not able to get the words out of your mouth when your brain is struggling oh so hard. Then being left just utterly and completely spent after a single task of brushing your teeth or getting dressed in the layers of clothes that carefully need to be picked out to protect the nerves/skin/bones/muscles that most days you would just rather both legs would just disappear. Begging to trade them in for "cheetah legs" while everyone thinks you're nuts and tells you there's no such thing as requested amputation...... Still researching that..
I have a goal - I figure if I put my goal out there I will hold myself more accountable, that's the plan at least- I need to come up with a short book that my children will read over and over, I want it drilled in their heads, so it has to hit home and stay there. I may have to make a different one for all of the children because their age ranges are so spaced.. Just a flip book, pictures and sentences (really it's my demands/requests to them) to REALLY LIVE life and not miss it or take it for granted. I don't have regrets, I think that's a silly word. But if some one would have told me at 33 I no longer would be LIVING as I used to know it, you can be damn sure I woulda lived it up harder, heaver, louder& faster! This isn't just a blog about me trying to raise awareness to Sjorgens, Scleroderma, Lupus, Sensory Neruononapothy Chronic Lyme, Ulcer Colitis (or many others) this is gonna be me trying to open some eyes to LIFE! If you knew that tomorrow you wouldn't be physically able listen to a radio in a car would you crank it up and listen to all your favorite songs today? If you were told you would never drive again because your reflexes and reaction time was gonna disappear, where would you drive to.? What would your last adventure be? Mine was 2 blocks from home almost 2 years ago, I was lost. Confused at a four way stop sign not knowing which way to turn but knowing I lived somewhere close, when confusion hits it has that snowball effect, then I couldn't figure out the gas and the brake. That was the last adventure I took. I wish I woulda been on a cool adventure with the radio on........it woulda made for a better story So my goal (sidetrack cari-I go every which way but the right way) a book/pictures/reminders of the little things/demands on what to fit in & enjoy in life/what to make time for/what not to take for granted~ all my advise that if I tell them it will go in one ear and out the other! but maybe just maybe if it was a physical object it would sink in, not be forgotten. It would be read, thought about, processed, and LIVED. Just LIVE your life for you! fill it up! don't let others look at you and think you are a waste of space and if they had your health, wealth! legs! arms! eyes! ect ect they wouldn't be sitting there on their phone, they would be utilizing every part of their being for something good. Go LiVE This Is all new to me, we'll not writing- I think that was taught to me in the first grade- but blogging. I'm jumping in with my rain boots off so I can feel the sand between my toes. ( there's no way I'm Hell I'd really do that 1) I can't jump, 2) I have central sensitivity disorder, basically I wear 2 pairs of socks and shoes at all times because I'm too hyper sensitive to touch! ) I type now because holding a pen is to painful and daunting at 1 am. I'm fortunate today to be able to type because last year I suffered enough neurological damage I could hardly feed myself. With awesome occupational and physical therapists and home nurse, my hands work again almost as if they are normal on days that are well.......normal
im just gonna put some junk on here for awhile till I can figure this out. I'm a self learner, always have been- not good with directions or instructions and having a messed up brain with very very short memory doesn't make it any easier. So this is gonna be done my way, not some stupid "blogging for idiots guide" book checked out from a library. It's for me really anyways, not you~ when you are sick you get the power to be honest~it's gonna help let some thoughts outta my crammed head. It's too stuffy up there, like a crowded stinky locker room room. I've gotta free up some space to think. So bear with me, or don't, I might be funny or crazy or an emotional roller coaster depending on the day it could be complete nonsense and gibberish or you might take away some knowledge on how to better understand a friend or loved one. Either way I am NOT in any way a doctor ( even though I spend multiple hours a week working with them, let me refrain volunteering cause they don't pay me I'm just an inpatient patient) and you should always consult your physician, saving myself here from someone in the future saying "we'll Cari told me to" like I said I'm just a girl.
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