Scleroderma is a chronic autoimmune disease that is characterized by the thickening (sclera) of the skin (derma). According to the Scleroderma Foundation, there are approximately 300,000 cases of scleroderma estimated in the United States, 80% of which are female. It is an unfamiliar disease that typically strikes between the ages of 25 and 55 and is different for every patient. Misdiagnosis is therefore a common occurrence. A cure does not exist yet.Some people are affected only on the outside, some just on the inside and others in both ways,” the disease can mean the hardening of the tissue of internal organs.. “Scleroderma triggers people differently. It’s a deadly disease – it has and still is killing people. I really hope that more research will be done and provide answers and solutions to those who struggle with it.” - See more at: http://www.thecorsaironline.com/lifestyle/2015/03/18/the-skin-i-live-in/#.dpuf Just another night, hard to sleep straight through, I'm like a newborn up constantly, being bothersom, not really needing anything just NOT sleeping. I go to sleep fast and easy but I'm right ready in a few hours. This last week we had terrible doctor appointments. When I say that it's not bad doctors (anymore) it's bad news. Where do I start, rhumalogist diagnosed 3 viruses just being out in public with cloud of people and my weakend immune system(that's the price I pay), and the trip to Fargo was a tear jerker. My specialist there(who is top notch) is sending me to Mayo, but also at the same time researching for the highest in knowledge in treating Scleroderma specialist across the country because MN doesn't have it! All tests have been ran, all procedures done, and a therapies and drugs tried. My struggle remains as yet AGAIN!!! I'm placed on hold to now search the country for anyone that works with/studies/researches this one and only rare disease, that's untreatable and there is no cure for. Again I must wait. My Esophagus is getting so bad even drinking from a star is bothersom. I'm completely off solids. I'm loosing more and more control over bladder and bowel as now there's at least daily accidents due to Scleroderma. You think I would be loosing weight again but it's opposite I'm gaining and there's nothing I can do, when things harden they become heavier) the super Strom meds the Endroconologist gave me to shrink the tumors in my brain on the pituitary glad haven't worked! My labs were still elevated and I'm still lactating! I go tomorrow to see if there's different drugs or if surgery is next option cause I don't have any babies in the house needing breast milk and it's quite the annoyance! My brain is empty right now, I will continue when I feel literat again! It's my own fault this time! I overdid it, I knew I was gonna go down after this was over! The price I pay to pretend (as close as I can, still with use of walker) to not let the ugly out for 7 straight hours on a Sunday. I made it through the fundraiser/dance performance that I had thrown all my energy into this last month!! I finished my job planning/directing/bossing around and was able to be there and SEE it happen! The girls dance performance was beautiful and the solo/small groups (dancers performed for the coach with no help!)was next to AMAZINGLY, the work they put into it shown throughout and you could see the pride as they performed in front of their coach looking for approval. I was able to get lots of photos! It's rare I attend what I put together, but I did......and know I pay.... I'm sure my husband wants to say "I told you, you were working too hard" but he doesn't, he keeps checking me, I am thankful for his constant care and thoughtfulness, rather than "told ya sos" and banter. This week (really who are we trying to kid ALL weeks) I've been in and out of doctors. I end the week over at Fargo hospital. I'm hoping there's a plan of action and not a plan of disappointment. Here's to all that fight through even though everyone's telling you not to! We are stubborn and will do it our way no matter how disabled we are. The blue tag hanging in the window or that cane or walker we use are there just for our safety and family's reassurance. They may slow us down, but at the same but at this same time they reassure a complete finish. HandiCAN. Just monitoring for blood clots. wating for (normal (horrible)happens to others side effects. Over what's a normal surgery . Let me tell you about that later cause I keep re typing and the same words. My brain is exploding in confusion, after trying all weekend to pull it together, beet the pain, and keep medically informed to pass info onto Hubby when he wasn't there. It's was a rough few days being that they didn't listen who fried explain my situation with not metabolizing pain narcotics and it has to be IV . Keep pushing Back home in my bed. At least when I don't sleep here I'm sleeping under the roof of my favorite people:) I haven't been bloggibg much lately. It's a busy doctor month again. 5 appointments this week in 4 days and that's including a full day at Oncology with infusions. My brain spins, but I think I need it to keep spinning, I'm scared when it is still there may be too many thoughts of the future. Don't take that out of context thinking I'm a deeply depressed or dramatic being, because I'm not, I'm a realist. I've heard what they continue to tell me and there's not much positive wrapped around. Every once in a while a new young specialist gets excited and put on my case, they are like a hyper puppy all willing to try new things, then a few appointments in they see I respond to nothing and it's too late, just like the others have said. Today I has a real live pin cusion (don't worry I don't feel this pain, it makes nurses shake) I keep urging them to calm down and try again rather than get another nurse to try and make me become a spectial, always a big deal over little issues! Finally my IV was placed. It's not bad vains, thankfully I've had PICC lines so much of being sick it's saved my arms, it's my skin. My skin is hardening, the Sclaraderma is worsening. It's hard to penetrate my skin with a needle. I didn't know it would move this fast. Results came back, just as I'd expected and had been trying to communicate for I'm not sure how long to doctors, my esophageal manometry test 100/100 swallows were incomplete. The soft tissue surrounding my esophagus is hardened and shrunk limiting my ability to swallow. In a few hours I'll be expected to get out of bed and off to Fargo to Endoscopy center for the Anorectal Manometry text (the other end). See if Sclaraderma is the reason behind loosing function to use the facilities as an adult, even though AGAIN NO cure, NO treatment we have to know what causes what. Winter is hard on everyone but winter is really hard on the old and sick. The only outdoor air we get is going to DOCTOR appointments because that's our life, gotta save our strength for those days. Damn I wish it was 6 winters ago and I was shoveling snow with an achy back, complaining about walking 4 blocks to work in below 0 weather cause I was too bull headed to start the car. It's things like that you NEVER think you would wish for again. It's things like that I miss, that was life......right now I miss laying flat in a bed at 3am sleeping. There's too much backing up from my stomach these days to lay down and too many thoughts that keep me from slumber Laying so much time Wide awake with my eyes wide shut Those two things I used have control over The two things that gave you scenes of sight They drive me nuts~ I want them back (and when I say back, I mean how the majority of people have them) I haven't lost them, they just have a lot more crazy moments, locked in space moments, seizure moments, cold stare moments, roll back behind in my head moments, and double, cross vision. I don't want to see stars, trails, or white lines behind everything. I would like to say good bye to the constant black halo that lingers over and forces me to choose drugs or the alternative: massive migraine. All the black blotches could go away too. Just one MORE thing I used to take for granted! One more thing I don't remember ever being thankful for It's the LITTLE THINGS that make it MATTER! Wish I woulda known this all before ~ so inturn I hope one reader passes this along and at least when it gets to the 5th person~THEY SAY, HELL ya my EYES are amazing, they are awesome, COOLEST shit in the world right here, these things let me SEE the world!!!! Not only be part of it but actually see all around you to! Best of the scenes right there SIGHT! I morn my "old cari sight" and now I release you TODAY go USE your eyes and see something AMAZING! And this time be thankful that you don't have to shake your head a bunch to get it refocused afterwards. Be thankful you don't have to look like a drunk and fall over after shaking your head to refocus. Say bye bye to all your heels cause you would be so off kilter from using those amazing EYES of yours you will never be able to wobble around again Enjoy walking in heals (not just high heals but ANY size heel, I'm stuck flat on ground with my gigantic 5'1 frame and no help from shoes. Enjoy not having to go to a Specialist Eye doctor every 3 weeks because of Sjogren's And Scleroderma and spending a fortune on glasses. Just love your eyes~ don't take them for granted~ they are ment for us to see with. SOOOOOO what are you waiting for go see something! Last year at this time I was getting discharged from my month long stay at a nursing home (after my month long stay in a hospital) my baby boy learned how to give me bye bye kisses. I have a gumbled up memory but that I will not forget. At this time last year I only had about a dozen diagnoses. We didn't have all the answers as to what was wrong with me. Hell I guess even now after 2 dozen diagnoses it's still not certain that's all that's wrong with me yet because every time (usually at least once a week) I see one specialist and they order more tests. I don't know how to feel anymore, I don't know what's expected of me anymore. I fought so hard to get answers but now that I'm getting them and none of the diagnosis have cures and lots with no treatments even avalible, I kinda wanna cover my ears and scream lalala that's enough! It's not that I'm gonna stop fighting I just don't know if I wanna keep listening Excuses- yes I have many, but I need to hold myself accountable still. That's what the blog is for, for me. Not allowing my self too fall too far behind. Cause when I slip I fall hard and fast. I need to be responsible to updating family/friends. My walking has become not such a rare occurrence these days. Still only very short distances before I begin the (normal) thoughts of about cutting my legs of. And never with out walker or cane. I Wish I could look through my 2 year olds eyes and see if he thinks of these as momma's "toys". I'd love to know what he sees in life. I feel that he's mind would give me the most honest thoughts. For he was born in to all these unpleasantries and shuffles back and forth knowing no other way. What is normal for most does not consist in this family. It's taken nearly a year for girlie to be comfortable and too and not too worried about what kids would may say (we are in a different town so, she had no friends that already understood her life)if she would. She is finally starting a little bit of it's not just her hurting anymore we are FAMILY --- we hurt together, we love together, cry and hug together laugh and yes yell together. This last week I prepped for a hard upcoming weekend. I knew what was on my plate, a wasn't gonna let myself or girly down. This last weekend I was an official dance mom!! I know right, what the heck!! anyone from my past is most likely calling bullshut on me right about now! I went out my body and let it be girlies day, I tried my hardest not to think in my sick brain or of my sick body and only of girlie. It was almost as if I was living through her with so much energy and excitement running through her, I swear the extra was getting donated to me! It was her VERY FIRST dance Competition with Just For Kix. Through the excitement they took a 4th in one routine and 1st in the other!!! My best friends drove us so papa could stay home with little wild man, girlie had her favorite (not really wish she was though) auntie there(it's so nice knowing that she's loved by peoples houses will travel to support her!)her uncle,and nana also there to scream out her name! The day was nervous, anxious,excitement and full of love~ so many emotions I think part of the time I was able to push back the thought of constant pain for a while! Those are the best days of motherhood, thanks to everyone who assisted in helping me be a normal mom on Sunday. Yesterday was back to "MY" normal life. Back to a full day at the Oncology Infusion Center. Yesterday I was jammed full of 5 days worth of IVIG treatment. Yesterday I dozed on and off with a drug induced killer headache and all its tremors. I laid down and gave back in to MY normal. I'll save my fighting days for the days I need to save up fight to have energy for the kids. That's motherhood, well how MY motherhood works.... That's how I feel so many days out of the week...... Tormented Ive had so many doctor appointments with specialists this last month my eyes have been opened to ever MORE. Clueless is almost a better feeling. When I was lost I was scared. Now I know where I am and I'm still scared. Scared is just a small word I'll use for a small blog post right now cause it's off to the Rheumatologist and Endroconologist this morning, to have explained the new bad diagnosis to me. ✌️holdin on to threads here New year, new changes 2015 is gonna be big~ it's a premenision I've started the year off spending most of the time in Oncology. It's been me against the automatic blood pressure cuff every 10 min watching, monitoring for abnormalities. (well I have POTS Syndrom so it took a few days for the nurses to get used to my "is she alive?" 80/60 to "oh gosh were you running a mile?" no I just sat up in the chair 125/90 with in 10 min fluctuations. Me against seeing if the coffee machine can keep up. How many dixi cups can I drink and then stack for entertainment. Me against myself. My brain. The torment it gives me. Lots of time to think when you are in a quiet place such as this. Too many words you don't wanna hear. I feel something I haven't felt in a long time. I feel as if I fit in. A place where I am finialy among others in that understand. A place I am not and will not be judged. I am safe. I am comfortable. I don't need to explain. Our household is full...full of LOVE...full of family...pets...you name it-we might actually have it around here. There's a little of something for everyone and it seems to be everything around but at the same time nothing right here. The Smith Family is looking forward to not only turning the page on 2014 but tearing the sucker completely outta the book. We are ready for whatever 2015 throws at us, you can call us warmed up, it's really just used to taking punches. The last spring we moved from Osakis back to Walker,MN (where we both were born and raised) we've spent a lot of the past year in the car driving from one doctor appointment to the next specialist appointment for the next text, procedure, or to yet consult over another diagnoses and learn how to adapt my living around it, since usually no cure or treatment available. The autoimmune diseases are coming in hard and heavy. Next week I get to start IVIG Infusions (we waited nearly a year for approval) I am on a 6 month trial, my dream team of Dr. Specialists are very hopeful that to see progression and building my immunity back. Colter spent his last summer as a teen working hard and shipped of to boot camp basic training a couple weeks early, right after his going away party in September. Chad and I flew out to California to see Colter graduate from the Marine Corps on Dec. 5th. It was an amazing accomplishment, and I'm so happy we got to be a part of it!🎓🗽⚓️🇺🇸 Hunter enjoyed working at a resort this summer (happened to be the same one Chad and myself worked at 12 summers ago) Hunter stays busy up selling vehicles and playing with stereo systems. He played soccer ⚽️this fall and I was able to make it to a game, (we had a very warm fall) Hunter signed up with the Army National Guard 🇺🇸in October and will be doing his first weekend coming up soon, his boot camp will be this summer when he's on school break. This year Paige got engaged to Bryant and they are planning for a December 2015 wedding in Walker, Minnesota. They also purchased their first home in Hutchinson. Paige enrolled back into school to pursue her degree for Human Resources. She is currently working in Bloomington as a Human Resources Assistant. Bryant is working Winthrop as an Accounting specialist. Paige and Bryant also plan on running Grandmas half marathon this upcoming spring! Cadance fell in LOVE with the art of dance 🎼🎶🎵🎤this summer and hasn't stopped spinning since. She has an amazing natural talent and is picking it up fast in Walker Just For Kix 👯(that's why we are constantly fundraising for her to go to Florida next winter with the group and dance in the halftime of the Outback Bowl!) This girl is high kickin, jumpin, twirling and landing in the splits all over our house now that it's too cold to send her outside! She went on an overnight field trip with the 4th grade to Deep Portage and learned about nature. She really enjoys her teacher this year and has made some great friends in the neighborhood and dance.its great to see her smiling again. Cortlan turned 2 in August and is following in the tracks of his older sister in sooo many ways, except he's 💯% boy, always a ball of some kind🏀🏈 ⚾️🎾🏉⚽️in his hand. We still haven't cut his hair so the Afro look has grown into a long surfer look now. I'm just not ready to loose those beautiful curls, and he loves me playing with his hair so there's too much holding me back with the sheers just yet, maybe by kindergarten check back with me. ✌️He had much enjoyment this year at many many "first's"; lots of parades, swimming in lake and pool, parks, fairs, playground, picnic, ect all things I can't do alone-but now have so much more help to do with the kids! Grandma Barb gets to see her grandchildren much more now that we are close in distance. I don't know how we would of made it through last year with out her help with the kids! Cortlan and Brayden have become not just close cousins but also "best friends". They are probably the funniest 2&4 year olds you will ever meet, (don't expect to get a word in, and don't go in thinking you will understand any of the 2 year olds words!) grandma Barb should win an award for raising one grandchild since birth, running a full time daycare and taking my kid or kids with little to no notice when doctor appointments send us traveling or running long. Grandpa Mark also moved back to Walker from Green Valley, Az to help Chad with the household. There's enough work here to keep him busy forever. We had to make the whole house handicapped accessible by hauling loads out and opening up space. A total remodel and outside work for the next decade. We bought the house that Chad grew up in. (I am hollering up the bedroom vent to Cadance like his mom woulda been hollering up at him to keep it quite!) Mark is bringing life back to the exterior home and huge lot, maybe Chad or I will take up gardening. Grandpa Mark would take me and Cortlan for walks in the wheel chair (and once he was to much pain for my lap he rigged a pulley system for a wagon behind my chair) almost every evening of the OTHER 3 seasons. We would go to the harbor, the city dock, the bedeck, playground, or bike trail. I had never taken in how amazingly well kept and a treat for the eye the Walker area is! I am very fortunate to live here, there is beauty all around us! As always Chad stays busy with work. In the early hours of the day you will find him one block from home, down the hill at the Chase on the lake. It was where his very first job was when he was growing up as well! Later in the day he's working at Zona Rosa cooking. He got his 72' Olds outta storage and did a little tire squealing and let Colter put a few miles on it before fall was over. The rest of his time I take up with doctoring. In the late spring of last year we were blessed with a PCA to help care for me and take some of the load off of Chad. He was able to hire one of my life long close friends (which comes in handy having a familiar face after a seizure and memory loss) it's also easier cause she's just another addition to our family. She has to know everything that's going on to be able to communicate between doctors when Chad can't go and then bring all the info home. Well that my friends concludes this lasts years hectic life, busy spinning wheels, not going too many places, or seeing too many things but all the while sticking close to one another while it happens. My wish to you is that you get the chance in your life to feel the love that I am blessed with everyday. Happy Last Year, Happy Present Year, Happy New Year, Happy Future Year The Smiths✌️
Remember there's no fact to my ramblings, and that its a proven diagnosed fact I have multiple Neuro disorders and "I'm just a girl with a blog"....read disclamer* This week started another adventure down my medical avenue. It lead me to another confusing path, it's already taken detours towards darkness & resentment but given me flashes of hope. That's the one I cling to;the hope! I am so very tired but I have to continue to show I have hope to my family, it's important to them. The other patients that I am in curtained off suites next to believe that they are pretty bad off. Most have physical appearance of their illness, lack of hair is the style. I don't know any of these patients but I do know one thing, they are in for a treatment that may CURE them, it may give them side effects but it also may give them extra pain free days with loved ones. There's a pretty good chance they get a beautiful thing called remission, I am happy how blessed my oncology buddies are.(they just may not know it right now) I have just started my 6 month IVIG iminoglunobom infusions. I am hoping to slow down Neuro, bladder/bowel dysfunction, multiple Gastrointestinal diseases, slow progression of sjogrens, slow sensory Neurononapothy and many other things. I am still a test study. It's not normal to be fighting multiple areas so late on. We hope to put some breaks on the speed of the degree my body is uncontrollablely leaving me. This isn't anything that will CURE me or give me remission, this is a test to see if it could possibly slow progression. This day last year I was at St Cloud hospital hooked up to IVs and feeding tubes getting transferred to a nursing home in the morning after spending the holiday in the bed there for the past 3 weeks. My brain is all messed up but certain days I don't think I will EVER forget. At least this year my weights back up, I have a dream team of specialists working on me and we at least have diagnoses, that's what we got. The MOST important thing I get to live at home! My nurses and therapists come there, my 3 PCAs are my best friends, I am married to my best friend that (I like to believe) won't let anything bad happen to me, I have a relationship with BOTH of my parents I never thought I would and I get to kiss my kids goodnight!♥️ So I appoligize for ignoring and not entertaining this past month but getting Christmas planned/celebrated/cleaned up was priority. See last year my health didn't just take it away from me- it robbed it from my husband and small children. I wanted to make memories this year! (My body and holy hell plastic credit card) are paying the price now, therefore if you see me and you think I look good, awsome (I work wonders with make-up was trained and Toni&Guy) im NOT,( truthfully im so exhausted I just wanna lie down and quit) for many reasons, life and holidays (like YOU but times it by 100 because of disease) and infusions 6 hours a day! This is life Moving forward-so over spinning in place, if you have people in the medical field that arnt doing anything go over them, keep pushing. Looking forward to the tricks up 2015 sleeve- bring it! I need to kick my brain in geaRRR! Been so busy lately participating in every holiday festivitie and throwing around career and tinsel, OOHH wait one minute that sooo was NOT ME, I've been busy getting myself knocked down with one ailment after another, having procedure after procedures done so every doctor in Minnesota can buy their family lots of extra Christmas presents and spending days in ER's and out patient surgery and (seriously multitudes of DAYS) on phones with doctors, assistants and nurses about upcoming prep,surgeries, procedures and treatments! (WHO THE HELL says I don't work?!?!) So typing, spelling, putting words together in sentence form has been pushed aside up until, well now. A night I need to be propped up with a hot water bag on my guts. Ok Let my brain re-coup and listen to thy spouse snore. Then maybe I'll let you in on stuff I miss the days that were blurred. I miss the weeks, months, years that were blurred. The unknown of off and on treatments, the remission, the "blame it all on Lyme" days. When the lines weren't so defined there was no way I could be of blame. It's not anyone making me feel blame other than myself, so rather refrain~guilt. When it was hazzy I wasn't the one responsible. When everything was smudged I kept rubbing my eyes and praying for them to clear, for everyone's voices to become distinct. For night to become recognizable from day and for the birthdates of my children to stick in my head! I NEVER ever EVER in my wildest would I have thought I would want "that" back,......I don't know IF I do..(I don't know what I want anymore)....but back then I WAS going to get better......I ONLY had chronic Lyme disease and some "disorders". When the future was talked about it was talked about as if it "was going back to as it was before".......now the future is this.....I know life is what you make it, so make it good, yadayadayada. I know keep positive and you will be positive, I know you put out what comes back at you, and miracles do happen, then this family needs to stop getting the mail from our post office box cause faith is really taking a beating! Ya hear! I want to help others, I want to raise awareness in multiple invisible chronic incurable untreatable autoimmune disease. (Holy crap that's a mouth ful) I just don't know how to open eyes yet.....I don't wanna be a negative Nancy but some things I gotta hit hard on the head real serious like because, well....I didn't and now.....I'm f___ed. Truly up a creek, I have now put my family at risk cause I thought there was time, thought I was too young too worry about it. I was doing the absolute best I could at the time, I thought I was covering as many bases that needed to be covered and gaining all the points by stealing time and sliding home. I didn't think there wouldn't be time later on to deal with things that seemed unnessisary. Everyone kept telling me I was getting better. Look into health insurance, find an agent, pick out what kind you want and through what carrier. Choose your company, your plan and policy get it taken care of BEFORE you become an "uninsurable customer". Don't wait until you have 2 handfuls of specialty hospitals caring for your health, and there's a list a mile long of your diagnoses that there are not cures for and you can't treat. You never know what or WHEN something like this can happen to you or a loved one. (Oh and I know who you are gonna suggest I try giving a call, those commercials/infomercials on TV, ya they all lie, but thank you for trying to take an interest I do appreciate that!!! Honestly it's a lot more than most<3 ) So rant of the day< go get yourself some godforsaking damn life insurance NOW! That's the advice I have for you today that and don't use that Crest toothpaste that has blue crystals in it cause they are really made of plastic and will lodge in your gums and dentists don't like it! Tomorrow I shall post something happy or humorous, I promise you so<3 xo My eyes are always open. I'm prepared for someone or something to jump out at me anytime now and say this is your plan, this is how the f__ it's gonna be, this is how we're gonna do it and this is what we are gonna do on the way there! And you have this much time to get it done and the road getting there goes a little the f__ like this! I'm too wore out physically and mentally to make these decisions anymore. I used to be the family planner. It now roughly takes me 6 minutes to pick out f__ing socks! I can not bake because simple directions make me cry. I can not make my brain navigate what was my computer (and best friend) has now turned into a scary devise that frustrates me beyond my controle to even explain. A years worth of Occupational therapy (I've been with physical therapy for years) and I get: "this Cari" it's me, I've delt with it, others are having a harder time realizing the "old Cari" isn't coming back, this is as good as you get with neuro damage. I Plateau. I'll go down hill and may be able to build back up with therapy but never farther than I was before the last decline. I am a realist. I now know I am not getting better. I am diagnosed with incurable and untreatable diseases and what seems to be weekly they find more specialists to throw me at to do more testing for more diagnosis But no ones jumping, no ones whispering any hints and it just seems like it's getting worse. I'm having a hard time understanding when it's certain I'm not going to be getting better, that I can't understand what this "new Cari" should be? Shouldn't those that know me best be helping me with that? Shouldn't they be letting the "old Cari" go as I had to? I was so hellbent to spread awareness about chronic Lyme Disease last year when I had more energy, now I wish I had more energy to spread awareness to invisible autoimmune chronic disease such as scleraderma and Sjogrens, how it can affect every single part of your body. I think it's actually harder NOW, Why you ask?~ because right now I'm looking kinda good, (gained some weight)when you see me on the way to doctor appt I may be outta my pjs and using a walker instead of in a chair and there's no IVs hanging from my arm..... Well before everybody was just able to tell me to keep fighting hard and doing what a good job I was doing getting stronger and healthier, I guess we can call that the good ol' days.....back then we still thought that I was going to be fixable and I was just presently sick. Right NOW I'm still having a procedure/testing or getting a new diagnoses that ends up being incurable just about every week or so. Last week I think I had 2 Bemidji, 2 Walker and 2 Fargo appointments. I am unemployed, I have been for years-but sometimes I feel I work harder now than I used to and I don't have to do any of the driving or 1/2 the talking or remembering at these damn appointments! Im in remission and off Lyme treatment and if people ask me "what's wrong, you look too young to be in a wheel chair?"... I don't have anything to say to them that they would understand or that they probably have heard about and it would just make an awkward situation between strangers. It's hard to talk to friends that haven't been following all along (which honestly are about 3 cause it's either too damn depressing or they don't have the time for me) because if they even missed a week of "Cari world" I'm lost at where I am at in "our" conversation! If they aren't one of the 3 they are completely lost and don't have a clue how a comment like "oh I can't wait till you feel better", or some bullshit like that is just as bad as a slap in the face cause it just clarifies that I am not even an important enough of a friend for them to have at least google ONE of my many handful of disease that I wake up and go to sleep with every night, that I will never get better from, and positive thinking isn't ever going to make my autoimmune diseases magically healed. But maybe having some real friends or real family around to tell me what this "new Cari" is suppose to do with the rest of her life would be helpful. I don't like that every single goal, every single future plan has been turned upside down and i don't know where to start from now. I need an arrow to pop out at me, my overload it always red light flashing, my comprehension is always buzzer blaring, my tension is like a really used up wore out band-aid ready to snap, I don't know how much times left, how much energy I have to do it or what it is that needs to be done, and did a say yet I'm exhausted from trying to find the "new Cari" trying to NOT be the "old Cari" Hope I confused a few tonight<3 Peace all Ok ok ok, I know I'm not like this huge big famous blogger, I'm just a girl, (which I'm totally cool with) but if you want the reason why I haven't posted in a time- after I went to ALL this work making a webpage- I forgot how to log in AGAIN! And I lost the app on my iPad....apparently besides not being cool enough to blog I'm also not packin' the right amount of brains either! Thank God my "keep calm bestie" taught me about the whole "notes" app on my phone so I've got this gateway to heaven on passwords!!! 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. |
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