Today was a start to a new daily routine for my youngest little guy! Im🙏🏻just praying this new plan works out for him. He now doesn't go into school until 11:30 (right at lunch time) he goes to his new room where he eats lunch at a table with the 3 other students he shares the room with. They are working on eating at a table and learning table manners. There is one teacher and 3 Paras in the room,(he has his same Para as before) This room hopefully will be better for him, there is way less going on. The destractions aren't there, he won't be overwhelmed. He has his own desk that goes up on the sides, I think that will help with some of his sensory issues. He can pretend to block out the world.The class room is painted a soft blue and there's an extension off the room with a smaller room filled with pillows, soft fluffy blankets and squeezy things. That's for when the children have their behaviors. They are learning how to deal with their tantrums.and controlling Anger and violence.I'm hoping that starting the day off later and being able to stay in pajamas longer in the mornings helped him out. We eliminated the huge fight of the rush to get ready and dressed in the morning out and he can now eat breakfast slowly like he naturally does.
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Oh good god, that only took me 2 hours and 3/4 of my brain cells to get logged in today. Don't expect much good to come from this blog today, ive wrote and re-wrote enough lines to fill up a whole page already. That's what most of my deal is. Second guessing everything.
i write from sitting on top of heating vent, trying to listen for the furnace to click off. its -27• •below zero out with windchill and our house is anything but warm. You can feel the cold seep through the thin walls and the old windows are sealed with ice. This last couple weeks of frigid winter have kept me pretty much home bound except for doctors appointments. This mornings dentist appointment was rescheduled because of the cold. Our furnace clicked off so now I must move around some heaters and get them directed to the thermostat so the furnace stays off for a bit and gets a "break", we can't run er to hard-she's been going non-stop for weeks! I know this makes me sound like I'm backwoods Hillbilly or some kind of a hick, but northern MN winters are hard, their not for pussys! I haven't had too many changes in my health these days, which is great.. Dr K had just checked out my hands for the progression of CREST (Scleroderma) and we talked about my esophageal mobility. (The acid reflux still being taken care of by the hiatal hernia surgery)we discussed energy/fatigue and again he didn't listen as I complained about my weight and all the different ways I've tried to loose it and not a single poun.d has shed, so discouraging ☹️ The Appointments with therapists and pain management specialists all go well.- I'm managing so they say. I'm still off of Methadone and walking on my feet. Much better off than I was say 2 or even 4 years ago at this time! Both winters I had to relearn how to walk and was stuck in a wheel chair for months. Never did I want that again to happen! I might be in chronic pain right now but I'm moving around on my own independently and interacting with my children, something that was taken from me before and I was scared to death I couldn't get back. Im still trying to remind myself every chance I get to make the moments last. To really take interest in my children's life and play a part in their happiness! Looking at pictures really got to me today- the times gone by way too fast! I've got to stop thinking about all the time that I've missed out on and concentrate on the present ( I get way too worked up when I even start thinking about anything in the future so we are gonna close the lid on that, pause it, and shove it back into hiding for now.) i woke up laying on my stomach, butt in the air,with my face smashed up against a pillow and glasses half off on forehead in a pool of slobber. I could only see out of one eye and my body wasn't cooperating just yet as I lay there confused as f💥💋k, processing I'm home this is my bed, look around, check out the ceiling it's vaulted I recognize that as being my Walker home. I'm dressed in daytime clothes so I've already been out of bed today., that's best news I can silently receive, that means my
ass can get up again! Whooh get up slow remember you have POTTS and it's been crazy lately. (my heartbeat beats loud and fast and my blood pressure drops when I go from sitting to standing.) i had been doing so welll. No seizures for so long!.. I was finally starting to be able to go on walks alone and be without my husband every second of the time.(not that it's bad, I love you babe) For the last 3 days the damn seizures have been back. I know why they are back, it's my foot pain. It keeps getting worse and I'm not getting any relief. ok, push myself up, gather my nice soft hoodie sweatshirt from the bed and slide down. (This bed/mattress is up high) I need to see if I walk....... strangely I feel like that isn't always the case. After seizures Chadrick immediately gets me to bed because I crash into a short nap usually waking up temporarily confused with some or total memory loss.. I'll have an enormous migraine and sometimes part of my head or face hurts, then I fall into a deep sleep and when I wake up I'm much better.. I'll have a few questions but I can get my shit together i have to have very small meals 6 times a day and I'm on a soft wet diet (mush) so I pretty much get rewarded with a pudding cup every 20 minutes if I'm good! Cortlan is always interested in what I've got because he thinks it should all be sweet if it's in that size cup. I've witnessed very surprised faces from him expecting sweet when getting pesto or specialty cheeses, spicy/hot, or Thai noodles. Im just going to get myself out of bed for the 4,5,or maybe6th time of the day and restart my day and see how everyone else is doing. ive wrote and re-wrote my blog post 3 times, I'm dedicated to accomplishing a published post today! Neuroligically I'm challenged so much, my short term memory has gone to shit! Things that require a log in or password are my nemesis, it doesn't matter how many times I write it down I can't retype the same and remember how to get to the building page within 7 hours of turning on my laptop. My daughter will tell me something and get so very upset when I don't remember it the next day, I listen I just don't retain anymore. It's not just when people talk to me it's with everything, it's so frustrating it's become so bad it scares me. I watch tv shows or movies and I can't figure out it happening cause I can not remember what happened in the scene or commercial before. I'm left confused constantly. I know what the elderly feel like, it's depressing. Reading is pointless these days.
I have just spent 2 hours , 2 frustrating hours trying to get logged in to this blog on my phone! I've been writing nearly everyday just not lately on this blog. I've been using my thoughts and stories on my memoir, which by the way is way easier to log into!!! The grammar and punctuation is just as bad but if it was to ever get published a fancy professional editor would have their job cut out for them.
on Thursday I had to say goodbye to my front and side tooth. Another reason for me to bitch and complain about Sjorgens disease. it literally DESTROYS your mouth. Right now it was only 2 teeth, eventually it will be all of them, but for now my bottom teeth are held in by wires. My perfectly straight and white teeth turned into a mouth full of loose teeth, gum disease, periodontal disease, shallow roots & receeding gums all in the matter of the last 5 years. All due to autoimmune disease and lack of no siliva. The periodontist failed ahead of time to let me know that I could not eat with my partial dentures in. Finding out that I have to take them out to eat makes me realize that I will never be eating in public again, because I now look like a freak show zombie hillbilly! Thankfully I left that day with my fake teeth so no one had to see! And they look perfect, you can't tell and they are perfectly straight again and the color matches perfect.
But im in pain (I know I know I should be used to pain). It's the pain where you can feel a heartbeat in my mouth, throbbing pain that pain pills don't touch. The pain that doesn't rest. It's freaky being toothless, running your tongue along the gums where they used to be. The last time I did that was babyteeth and I was what 6ish maybe 7? Once again I'm missing out on life. Today was a dance day, Cadance had her Brainerd dance competition and I'm at home icing my face missing out on watching my girl do her thing. I hate when I can't keep up. I hate when I drop out of commitments, but that's part of incurable untreatable autoimmune diseases. Sometimes I let people down and unfortunately most of the time it's my family. I can't have anyone relying to much on me or they will just be let down. hopefully I get some videos sent my way! (Usually I'm the one that records them) next weekend she has another solo contest so I've just got to think positive and not miss that! at this time last year I was nearly hanging on... it's hard to believe that much time has gone by except I have the unfortunate unprofessional looking scar covering my whole stomach.. grilling my husband for information a year later because it's taken that long to talk about it (the 8 weeks you thought your wife was going to die, is tough to bring up in conversation and well I DONT remember a thing)
i had numacoctol pneumonia. For weeks prior to being hospitalized in Bemidji and then my body started to shut its organs down one by one I was airlifted to Fargo intensive care. My lungs stopped working as well as my kidneys and liver. My heart was suffering. A trach was placed to breath. And machines were running for me. I was swollen and he had dent seen my eyes for days. I was swollen and poofy. While in intensive care I remember being in extreme amount of pain and screaming and nurses telling me to relax and calm me. All I can remember is coughing and hollering and not being able to get my breath. Finally someone noticed something and into surgery I went. My feeding tube had became unhooked and was releasing inside all over my stomach causing a major infection!!!! A PICC line was placed and IV antibiotics were immediately started full force. I was in the ICU for 4 weeks, then regular room for 4 weeks with physical therapy, then I was discharged to Golden Living nursing home for my last 3 weeks to finish up IV antibodics and physical therapy. Once again I was a mother with out her children and my husband was left to do all and still drove nearly every day the 4 hours round trip to be by my unconscious self. Sometimes I ask why me, why does all this shit always happen to me? But I'm also so lucky what if it hadn't worked out all these times? What if I didn't always recover and beat this? What if I didn't have such a stand up husband that can hold our house together!! I do need reminders that I am truly blessed, I'm human. This past week I had multiple doctor appointments at multiple locations. I spent 4 days in the car. Long days only getting out for a short time. I used to say so often "that's the life of a Lyme-ie!" ( someone with Lyme disease) but my Lyme is in remission so now I'll say; this is the life of a girl with multiple chronic Autoimmune Diseases. I will now spend this week recovering from the weekend (when my monster baby is home and girlie had 5 active dancers over)! And recovering from last weeks travel. What sticks with me; "Cari let's see if we can work on your med list" says all but one doctor. I politely explain we will be doing no such thing to all the begging doctors but I probably owe an apology to the last one. "No we are not messing with my meds, we are not taking any away or adjusting the dosage. You will represcribe and keep everything the same please!" I don't care how many pills I'm taking and what anyone has to say about it. I don't care how much weight (well ya I do it sucks but I pretend) I gain. I don't care if you think something isn't working, I don't want to risk it. Last year at this time I was always using a walker and quite often stuck in my wheel chair. I weighed 80 lbs. I was to weak to do anything and in too much pain to move around and get out of the house. Last year at this time I was wearing diapers and could not bathe myself. I was having seizures daily, needing naps multiple times a day. I was unable to play with my own baby on the floor, his hugs hurt me! Watching my girlie dance made me nasious from the spinning and I couldn't listen to the music. Riding in the car I was unable to look out the windows with out getting sick. The nerves were soo bad every step I took was on broken glass and my ankle bones and up all my joints were broken, my brain was on overload and I couldn't make past from present. My brain was mush! Confusion was very high and that led to anxiety and panic attacks. SO NO DOCTOR NUMBER 1,2,and 3 WE ARE ABSOLUTELY NOT CHANGING ANYTHING WITH MY MEDS! It took me a year to get this far and I'm not going back! I know what it's like spending Thanksgivings in a bed and hospital. I know what it does to a family when you are in the hospital over a month during Christmas. I know what it's like to live in a nursing home for a month. I refuse to go backwards only forwards! And I'm not comfortable taking away any of my drugs that got me this far just yet. Last time this year my quality of life really sucked!!! This year, right now my life is so much better! And I have one doctor that took the time to listen to me to thank for that:) I wish I could go the all natural herbal way, but it's not an option, I tried for years. I take tons of supplements and am a huge user of essential oils but there's only so much that they can do. I'm on a stricter diet than you'd believe so I won't even tell you, I'll just go chew some cardboard. And if I could exercise I would like a junkie!! (I'm going to start swimming this week) Sometimes I think the doctors try to mess you up so you have to come back sooner to see them! Arrgghh Let's just examine and go guys~ keeping it real here remission. remission for some. learning to live with the others. dealing with what is lost and appreciating the time ive been given im gonna try to update since i havent been posting lately. everything didnt just magically get better, i just got sick of talking about it. i know there are lots of people that care about me and otheres that are reading because they are far worse off then i and looking to me as hope. so here i go. ill try i havent wrote in so long, it took be an hour to figure how to log back in.. Neurological i still struggle at things dailly. stumble on words, no short term memory and have the reflexes of a snail,. i know people look at me im with judgment and think im a bad parent but seriously i dont know until its too late to avoid incidents but it is not something i am equipped to handle anymore. The Lyme disease and Co-infections are still holding in remission right now, and i pray every day that i dont get an infection and trigger those horrible bugs bugs up to the surface again!. i am extremely careful in natural and holistically ways, diet and rest. there is no cure for chronic Lyme disease. Sjogrens Disease is something i live uncomfortably with that i wish more people could understand shit i wish more doctors knew about it! Sjorgens is not just dry eyes, dry mouth, and arthritis. It effects all of my organs and joints as well.! there is no fluid in between them., there is no treatment for me because my inflammation is no longer active (i have had it too long untreated) there is no cure. my Scleroderma has been acting up pretty bad this week. my throat hurts to even swallow my coffee, let alone food feels like razor blades! Scleroderma is another autoimmune disease where your connective tissue hardens to like stone. my esophagus is really effected. most people have outer skin issues and get sores that crack open and get infected and wont heal and need amputations but the type of Scleroderma i have is all internal and my insides are hardening. there is no treatment for Scleroderma as well as no crure. you nearly even hear about it. i visit the Gastrologist probably the most out of all my specialists. but guts are so warn out. Gastroparesis is a difficult disease. especially with all my other stomach issues. the diet is NO EVERYTHING and before that Im already no gluten, sugar, soy,and no fiber. i am pumped full of colace and miralax all day just trying to keep things moving. so i dont bloat out and look 8 moths preggers. in the last six months ive gained 60 lbs from nothing, its very frustration because i dont eat., no appetite and it hurts too much to eat. but being chronically ill you are either unhealthy 80 lbs or unhealthy 160 lbs. either way ive now been both with no control over it! I just had a 2 part surgery getting a stimulater surgically implanted into my lower back that creates constant current that i can control with a remote to assist with my bladder and bowels. i was having at least one accident a day sometimes from just getting up from a chair i would have an accident in my pants.. my self esteem was at a all time low being in poopy pants!! this surgery went awesome and im fully recovered, remarkable experience, i highly recommend! i now will hold a card that keeps me from going through airport X-ray machines. my seizure activity has been pretty low lately. our house has been quite and not to stressful.. still going to neuro eye doctor every month whos in charge of my trailing eyes and tracking. most of my seizers now are just small and no one even notices when i have them, i just kinda blank out for a little bit and my wyes may flutter. the tumors in my brain on my Pituitary gland are now shrunken back down i will remain on that hormone medicine for 6 months to make positive and have another MRI. I am through with my IVIG treatments after testing and there was no difference in the nerves. all the inflammation remained the same which showed that it has been inactive for too long to turn it around. even though the IVIG benefited me in other ways such as protecting be from colds, and building my strength it was too much of an expense for insurance to not have all my specialists on board to order them again. lately ive been walking with only my cane lately and have the walker put away. my pain is present but i am walking with a smile. ive came a far way in the last year im going in the right direction cheers . I was doing fairly well, transferring my writing from our family's Go FundMe page into blog entries. I can't explain what happened.i kept finding out more and more doctors news and I just pushed it back to type another day, always upset by their messages from a lab result, test, or bad office visit. Some days I took my extra "spoons" and used them to physically push my body and work on my muscles. Not having control over my size has been one of the toughest things I've ever gone through.ive never experienced being the size I currently am. I am having a hate everything about it, can't look in the mirror and I'll break your phone if you take my picture size. I never in my wildest dreams would I have thought that my appearance would be an issue, never worried about it before I got sick. It's really making me feel more in touch with other people that I didn't notice certain things before, such as surching for a swimsuit that isn't a size smal or double 00. Okay okay off the weight and on to the illness How about I tell you about one ailment and it has to be a positive one, then when my brain isn't fuzzy I'll get everyone caught up on the bad and ugly! The tumors on my pituitary gland in my brain are starting to shrink!!!! The medicine is working so that will meen no need for that surgery!!! I forget that my normal is not anyone else's normal. And being that I'm trying to ease awareness for invisible autoimmune diseases maybe I should open up more and l let people in. Why am I so damn tired in the morning when I wake up? Because usually that's shortly after I've finally fallen asleep. I have to hide this and not complain because the mom job starts and I'm left in charge of the kids around 5 am ( sometimes we sleep till 7) when chad heads off to work. Why are my lips raw, bleeding cracked and stuck together? Because Sjogren's doesn't allow me to produce saliva, so if I selpt for a while (even with medicine and vasiline on)my lips get blistered. Why are my eyes red? Same as above Why does the blankets look like I struggled through a storm all tied up? Because I've awakened every hour at least to try to get comfortable. I have 3 down comforters and a sheet to create weight and hold my uncontrollably spasms. Why do I have like 17 pillows? Because I need to prop myself up laying down for a long period to help with all th GI issues. I have constant burning in the back of my throat and there are chuncks of disgusting vomit stuck from my constant uncontrollable coughing.i need to be sipping on warm liquids and sucking on special saliva producing tablets. Why are you drinking coffee in the middle of the night? It's the only thing that calms my stomach especially being that I'm not standing or in perfect sitting position. Coffee keeps my esofugus open and pushes the bile back down. I also have to suck on saliva tablets to create more liquid. Sometimes my lips are seriously stuck together so tight they bleed when pullin apart with help of my fingers. The ceiling fans on, let me let you hear it.: it's one of the most crazy things for my ears and brain. I need it on though to get me through the miserable hot flashes and my spouse likes it on. The sound goes from super loud like its flying down at me and is spinning so hard that it's going to fly off then backs way off and I can barely hear it. This is they cyle it goes through every few minutes. Night time I'm also prone to bladder and bowel accidents. It's hard to tell if it's gas or oh shit, its shit! And it's a hike to the Bathroom. I lost my dignity long ago after being admitted in hospitals and nursing homes. I have accidents. I am 34 it sucks. I no longer have the warning neither do I have the control. My nightstand is piled with essential oils to help in calming and GI, hormones hot flash and insomnia. I'm just so severe they don't cure they are like all my prescriptions supposed be helping the symptoms Supposed to be making my life more easier to function through. I would love a cure to Sclaroderma and Sjogren's. I would like to get the chance to sit down with both of their leaders and chew them out. I would ask them to hold off until much later in my life if they will only work a deal and not lift their disease off. I'd explain to them that I'm only 34 and they are taking me away from so much of not only mine but also my husband and children's life. If they were still pricks and I couldn't plee bargain them down, I would let them know how much they suck before I punch them in their face! Recently I've been doing more than before. That's not because im getting better, not being negative, just honest! it has todo with my pain management and help from the IVIGs, we see that neurologist at the U of M early next week. Lots of test, then hopefully we can continue this plan since I'm walking now!!! Fingers crossed. I'm gonna try to sleep a little bit now There have been so many ups and downs and loops in the last few years of my family's lives that if it were a roller coaster it would be a XXX too scary of an extreme ride to even ride. The jerks and shakes from it left me tired, worn out and even bruised like a piece of fruit. Every time I think we are coming around the last sharp corner to the end of the ride anothe humongous drop dips me till I feel as if my stomach hits the floor. Even if it's something that didn't actually happen in the last year in a half and you just become aware of it now. Even if it's not something that necisarily happened to you, and more on lines of just involving you. Say it was just how someone felt about you and you family or business and was too scarred to speak up then, feelings they held in for years and now are left with bitter hatred and too scarred to confront me. It's easier for them to hide out and complain behind my back about how horrible I took advantage and used them. They have put So much anger into holding on to resentment rather than discussing and letting free their feelings to start to heal. And then you get others that make huge life changing mistakes and you get the blame. You try to warn them, but being an adult and someone the same age or older it's hard. Their ears are closed to listening to advise and eyes blind to all signs, and then as it all ends in disaster( just as predicted)you are there to pick up pieces. And then it all comes right back down to my health..... My sickness..... My illness.....my I don't even know what to call it other than the"thing" that I've lost a HUGE portion of family members and friends over because of it. With ever sharp corner equals a change and with every change equaling a dip that leads to a climbing hill. I ALONE in my damaged sick body have to climb these hills alone. Because of this you may think I don't care of others anymore, it's not that, it's just that I used to (before sick) care WAY too much, so now I have energy to give only to a few (and those are the ones I choose)close members of my family's circle. We've now chosen our family, I do not have strength to deal with bitterness, I believe in getting it out and moving on. Let it go, forgive and free you body some space for love and undo hatred! I have been running (wobbling with cane)too fast, almost always outta breath and control. I tried a few different things in my self care, I stepped back and put the silent hand up. I thought maybe, just maybe if I didn't talk about my illnesses, my diseased body, my sick and never getting better self. I thought if I didn't talk about it, it might get better-so WRONG was I. I was told by a loving friend, one that I have looked up to for years, someone who's heart is bigger than any I know, that shutting down my communications and being non verbal about my life, my joys, my struggles helps no one. I need to go back to being public and open, to educate and raise awareness. To give support to others that may be in similar situations. If they don't want to read it or if they think it clogs up their newsfeed, or is too boring to read-all they have to do is "de-friend" me or take me outta their news feed, but sharing the blog is to help others and raise awareness for invisible diseases, especially this month, July is Sclaroderma! Get out your turquoise ribbons out Let me translate; please sissy! He looks up to his older sister so much, picks up on everything and mimics all, good & bad. His manners are suburb but the bad habits are surreal. He is a special child, a baby we weren't sure we would be blessed with. He was watched over intensely by many in the womb. He followed 2 baby's that didn't make it, late term traumatizing losses. He will never be viewed as a replacement only a huge life of his own. He gathered all extra energy that was left behind to make it through and now leaves me worn out every day. My love for him is the same as it is for all of my children, I just hold him a little tighter. I used to write so much more. It used to be so much easier, the words would just come out. Now I read them a couple times and think a few minutes before I put them up there. And press delete a lot. Before I could not read. For many months, maybe a couple years.... I could not successfully comprehend what I was looking at, I was not retaining the information. So I spent my time writing. I know that in no shape or form was the punctuation right, the slang terms used correctly or even with spell check a pile of mistakes, but I wrote. It's a no win situation I enjoy being able to read, but I don't enjoy that I spend all my time reading of disease. I can not help that I constantly catch my face in an article on topics pertaining, to me which now are so much different than a normal woman of 33. I miss entertainment, style, fashion. Color, noise, movement it's all pushed way back, it has to be because now all the space is reserved for health, what I can and can't do, eat, drink. The spot in my brain reserved for reading is always rotated with info on different diseases, clinical trails, doctors names to track down, different side effects to drugs, new symptoms to one of the many diseases. That part of me stays busy. That's why I haven't wrote as much. I'd love to but I'm used up trying to find a cure. Sclaroderma issues That's all it is on doctoring days, just hurry up and wait. Unfortunately most days are day spent with doctors. It starts from waking with the noise of children and hurring to get the dog outside with no accidents and it doesn't end until I'm right back safe in my bed that night. See a normal-slow pase for you is me getting winded and needing a break 3 minutes in. So if there is any specific appointment/activitie/place to be at a certain time it creates a huge amount of stress physical and mentally on me and I will feel rushed-hurry up and wait. Today I struggled with the words of my Endroconologist. She explained how when some people are sick they loose a lot of weight and others gain.It struck me really REALLY hard (not the gaining weight part, that's been going on for months I'm used to that!) the part where she categorized me as a "SICK PERSON"...... I know everything that I'm diagnosed with, I know that I am handicap. I know that I have many diagnosed invisible debilitating disabling diseases, BUT "sick", that's one I have not considered myself. Another appointment never a clear answer, we will try this and then that, test after and double up that. Cari you are a difficult one, it's never relieving to hear that it's all a trial. That it's not normal, they've never seen/heard/read about this or that and they are going to consult him or her. All I wanna say is fix me. Fix me and quit telling me how rare or unheard of this or that is! Be that ONE doctor that puts all the pieces together. Or be that one doctor that tells me I can be done. Done searching for answers and magic medicine. Done hurrying hundreds miles to meet new specialists that only say the same thing over and over, try this and that hurry up and wait and see no results. How many times have I heard "one more time momma!" From one of the kids?... I think back and I am disappointed in myself. Too many times I replyed "one more", or would just say that's it, we gotta go, no time. What was SO important that I couldn't throw a few more pitches, give a few more pushes, lift up and let go, or simply watch another dance move or pretend to play make believe for a while longer. Why was/am I/any adult so unaware of the presence of now? Why are we in such a rush that pushing our child one more time on the swing will interfere with the 3 conversations going on at the same time in your phone stuck in the free hand. If you can chat via text with hubby about dinner, Facebook message about upcoming school meeting and update status as "quality time at the park",(NOT) and check your emails for private online sales and then calling a friend about the upcoming sale you just read in an email. Now if you just did all that WHILE pushing your child one handed on the swing, just think about what you could have done if it was just him and all your attention. Think how capable of a multitasker you are and if you put all the energy into your kids during "their time". WOW! It's not that I'm a pushover, an easy parent, or a non disciplinary adult, I just have started to see things differently. The rush isn't there as it used to be. The pressure to get things done just exactly so is no longer there. If he would like 7 more pitches before we come inside so be it! It's not my time to take from him it's my time to give to him! If she wants to show me a dance move she learned (even though she's been spinning around forever and I can't tell the difference,) of course I'd love for her to show me. Maybe because of my brain neurologically slowing down, or my body and physical movements (at times none at all and other slow maybe unstable) I've learned/seen what I believe is a reason to slow down. Enjoy every moment, take nothing for granted, find meaning and compition through all. Make seconds into minutes and enjoy life more!!. Love deep and heard with all your heart. This is for the Tough Days.Via Sarah Harvey on Feb 5, 201 This is for the days when our hearts hurt like hell, pulsating with a fierce, fiery pain.This is for the days when we bite back tears, trying too hard to swallow them whole. This is for the days when our souls feel heavy, so we slump our tired shoulders down, down, down. This is for the days when getting out of bed feels like a bad-ass, award-winning achievement. This is for the days when we tremble with anger, our temper on super-short hairline-triggers. This is for the days when we feel empty, useless and invisible, like a hungry ghost. Yes. This is for those really tough days. The days that rip us wide open, leaving us naked and exhausted, shivering in the dark. The days where we just want to give up. The days where we want to run far, far, away. But, we can’t. We can’t run. Or hide. Or give up. Because if we did, the only person we would be running from is ourselves. We would giving up on ourselves. Hiding from ourselves. So, yes, we can try to bail and haphazardly fling ourselves under a fast-moving bus when the going gets tough. But the thing is—we actually need ourselves the most on those f*cking tough, trying and terrible days. Let’s stay. Let’s stick it out. We don’t need to understand what we’re feeling. We don’t need to analyze it. We just need to stay and support the sh*t out of ourselves. How? What can we do? We can be bold and dive right into the toughness of the day, feeling the icy water drip into our hearts, freezing to form incredibly beautiful icicles. We can run directly towards ourselves, sprinting with wide open arms, a supportive smile and a glass of succulent red wine. We can buy our battered souls a big bouquet of blossoming flowers. We can clear a space and cry a thousand crystalline drops till the skies clear and our salty tear-rain has passed. We can run our soul a frothy bubble bath, slip into mile-high lavender bubbles and take a breath. We can retreat from the world, burrow under our covers, sigh, moan and just hurt. We can ask ourselves, “What can I do for you right now?” We can be really ballsy, wear our heart on our sleeve and ask a trusted friend for an extra-large serving of support. We can curl up in child’s pose and cry into our yoga mats. We can write, paint, dance and sing our hurt, our passionate pain, our wicked grief, and express it no-holds-barred, creating magical art from our madness. We can cue up an angsty, melancholy playlist and sob or scream or tremble till our hearts slip into a soothed state. We can reach out, take our own hand and squeeze it hard. Yes. There are a thousand beautiful things we can do to support ourselves. So let’s vow now to never, ever abandon our sweet selves again. Ever. Because, yes, some days are incredibly tough. But they can be really juicy, too. They can be transformative. They can be beautiful. They can be filled with inspiration. They can be chock-full of creativity. They can be exactly what we need. So, let’s be bold and stick around. Let’s be badass and meet those tough days head on. I've lost track on how many drafts are lost in my phone. Blog beginnings going somewhere but ending up nowhere to be found. Posts that I've thought were interesting that's why I start them, but later I'm not to find them to hit the publish button. Posts that I start with an idea that I want to come back to at night (when I write) and elaborate more on. I know they are in there somewhere, tens of them, started with good story material. Good enough to be started and saved so I give them proper attention when writing. That's the real reason my amount of posts is minuscule in a blog world. I start and..... I have no follow through, but I really do have many more 1/2 posts I'm just not the tech smart enough to find them. Where in the blog world/ air beginnings /save later to finish at another time /did those unfinished posts go?!?!?! So much is always happening in a world where nothing ever happens. In my life that should be boring but there's always too much happening. I'm sorry that I haven't aloud you Acess to be entertained. And now I will hit publish on a blog that is nothing but an apology explaining why I look like a slacker when really I'm just not smart enough and am stumped by technology yet again! |
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