#dysautonomia

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Clearly I’m the star ⭐️ of this photo, the bride thinks she’s stealing my thunder but no 😉 #goldendoodle #workingdog #servicedog #friends #bridalparty #dysautonomia #chronicillness #emotionalsupportfriend
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Looking back on some favorite moments. My brother was so empathetic on this trip; he even went around the corner the save my ears from the rustling of opening the present. I am still talking too loud so dad can hear. 👂 Pez Batman for my brother, he was all stealthy flying in to be at my appointment. The effort it took to get a Batman pez for my brother while bedbound! I was so happy to have my little present for him 💝🦇 #candy #funfood #soundsensitive #family #stanfordhospital #fbf #mecfs #stanfordinfectiousdisease #pem #postexertionalmalaise #chronicfatiguesyndrome #cfsme #myalgicencephalomyelitis #chronicillness #chronicpain #spoonie #invisibleillness #dysautonomia #painsomnia #stanford #freshair #dusktilldawn #mecfs #artist #lightsensitive #dysautonomia #spoonie #insomnia #migraine #dysautonomia #pez #candy #batman
Yes, I’m jealous. I miss these foods. FBF to the streak continues, Dad bought “us” fries on way home from my GI procedures! 😂 Haven’t eaten in two full days and I’m waiting for ferry with this deliciousness. So close, and yet, so far. 🍟🍦 #fbf #ibd #ibs #jimgaffigan #foodporn #painsomnia #insomnia #foodallergies #inflammation #migraine #chronicillness #cfsme #chronicpain #brainfog #spoonie #mecfs #lightsensitive #soundsensitive #fibromyalgia #dysautonomia #invisibleillness #spoonielife #ivars #havealaugh #icecream #fries #ferry #pnw #islandlife
I think one of the most difficult parts of chronic illness is maneuvering relationship in the midst of it. It is only human to want someone to be able to understand what you are feeling, why you feel that way, and know how to help in the best way possible. For me personally, there is a big factor in wanting someone to want to sit and listen to me babble amount my vitals, doctors, medical fears, victories, how I feel, and nonsense. I have lost all of the greatest relationships I have had my life and honestly it sucks. When something happens and I want to call some for a laughing victory dance to be shared over phone or a crying in bed late night talk....who is there to call? . I find this to be true for many of you that I have had the great privilege to talk to. I think there are a few things to be done. 1) Let’s make sure we are supporting one another! We each get enough hate the way it is! 2) Know it is not your illnesses fault that the relationship/s ended do to the affects of CI 3) Make sure we give friends that have broken off second chances to be there for you in the crazy good and learn to be there for you better in the crazy sad. . If any of you have a friend that you have drifted away from who is chronically ill, do your best to be there for them. They a somebody, some day, very soon.
The Great Surgery Adventure, recovery I got my stitches out! It’s nice because they were starting to pull, and it also let me shave my head again. Since getting back to Denver, most of my time has been spent dealing with crises or recovering from two major surgeries and road trips. I will say that before the neck surgery, I would have been stuck on the couch for about a month after. Instead, I’m able to get a few small things a day done around my apartment. It takes me forever, and I need a lot of breaks and a nap, but I say progress! - The other part of recovery I’ve been working on is strengthening my legs and core with a few simple exercises. Which is a great tie into... - EXERCISE! - A loaded word for most of us, and a trigger for some, I’m sure those of us with chronic illness have heard about aunt Sally’s friends daughter who cured like 5 illnesses and cancer by doing super-yogarobic sprinting. That being said, exercise - or even just movement, is important in recovering from surgery and can benefit most people with most conditions. I’ll be the first to admit how hard it can be, as severe fatigue and chronic pain have been some of my most disabling symptoms from the beginning. My problem was, I was trying to look at exercise like I used to: 30 min- 1 hour at the gym or doing a sport 5 days a week. I couldn’t stand for more than about 5 minutes, so forget that. I had to redefine for me what exercise meant. I worked on coming up with a few simple PT exercises I could do in a few minutes. Instead of saying, “I’ll do three sets every day,” I just try to remember during those times when I have the energy to do the mini routine. If I miss a day, a week even - fine, just try to remember. On better days I may walk in the hallway with my crutches. On bad days i may try to remember to pump my feet as I lay in bed, or I may just skip it and be gentle with myself. It’s helped. 🙂
#fibroflowerspooniechallenge Day 2 √ "What do you have"? ___ Well - takes a deep breath - What I have officially been diagnosed with: ✓ Fibromyalgia #fms ✓ Myalgic Encephalomyelitis / Chronic Fatigue Syndrome #mecfs ✓Ehlers Danlos Syndrome - Type 3 #eds ✓ Irritable Bowel Syndrome #ibs ✓Postural Tachycardia Syndrome #pots ✓Dysautonomia #dysautonomia ✓Essential Hypertension #essentialhypertention ✓Temporomandibular joint dysfunction #tmj ✓Post Traumatic Stress Disorder #ptsd ✓3 Bulging discs and degenerative disc disease #ddd ✓Situational Depression/low mood. ____ I'm currently in the process of finding out what TYPE of #autoimmune disease I have, on top of my illnesses. Recently I've deteriorated very rapidly and the tests I've had done is showing new problems. Honestly if I could stop being referred to mental health counseling and actually have my pain levels reduced to a function where I can sleep and eat, I'm pretty sure a few other symptoms would subside also, but *shrugs* I guess I have the mental strength of a superhuman at the moment because I'm living through a lot of pain that positive thinking and meditation doesn't touch (hence the above picture). So, that's what I have. ❣ 💜 💙 #spooniechallenge #meandme #fibromyalgia #chronicpain #insomnia #disabled #disease #bedbound #missingmillions #challenge #doyouseemenow #spoonielife #spoonieparent #spoon #life #spoomiesunite #keepgoing
Hi y'all! Im selling infant/lap sized blankets! All proceeds go towards a cardiac service dog.They measure a little over 30x30 inches. If you are interested in a custom order with your pick of 1 main color and 1 contrast color private message me! If you are looking to order the ripple blanket please read the first photo as the stripe pattern will be different then what is pictured. The white blanket is available to purchase, send me a pm if interested. The pink ripple has been sold. Shipping not included. Shipping will be calculated upon purchase. All orders will be posted on etsy to ensure everyone's safety. -You will not be obligated to pay until the blanket is done and ready to ship- #dysautonomia #CHD #servicedog #crochet
Last night I had a dream that I was running. I wasn't running from something, and it wasn't the kind of dream running where everything is slow motion. I was just running- with no pain. I was going up hills and over rocks, jumping off things and moving around pain free. It was so lovely to feel like that even if it was only a fabrication from my subconscious self. I truly cannot remember the last moment in which I didn't have pain. I have no memory of what it was like to wake up without 100 pound weights on my legs and fire in my chest. No memory of how my body felt when I used to run through the woods brandishing stick swords and climbing trees as high as they would go. I remember the moments, but not the lack of pain. It wasn't something I thought I would need to remeber. I never stopped myself as a child and thought "remember how easy it is to stand, remember the clear breaths, remember the stability of your knees, you'll miss that when you're older" because I didn't think I would miss it. I didn't think I would have to. We're exploring some options right now that may be able to help, but may not. It's all very weird and uncertain but I would appreciate prayers for provision and understanding if it doesn't go according to our plan. I know God had something in place long before I considered this but I don't know if I'm ready to see if our plans align or not yet. . Image description: Abby sitting on the ground. Moo is lying across her legs in her service dog vest. #eds #ehlersdanlos #ehlersdanlossyndrome #chronicillness #chronicallyill #spoonie #rsd #crps #POTS #POTsie #tachycardia #pain #disabled #disability #edstype3 #dysautonomia #edsawareness  #chronicpain #100InvisibleDays   #servicedog #pitbull #staffordshireterrier #servicedogintraining #sdit #mobilityservicedog #mobilitydog #edsservicedog #bullybreed #dog #MooTheMobiltyDog
I have to start taking better pictures of him lol!
Date night! Went out to dinner... couldn't make the movie work because my hips are too messed up to sit that long. But, at home, couch cuddles and a movie like usual... lovely as always. 💜 . . ID: April dressed up in a dark green dress, wooden dangling earrings, a light brown necklace, make up, and teal glasses. . . . #eds #ehlersdanlos #ehlersdanlossyndrome #edslife #hypermobileeds #edsawareness #hypermobility #edswarrior #zebrastrong #wheelchair #wheelchairlife #disability #disabled #pain #chronicallyill #chronicillness #invisibleillness #dysautonomia #disbabeled #chronicpain #chronicallyfabulous #edssucks #flare #cpunk #zebrawarrior #spoonielife #spoonie #disabledandcute #cripplepunk #babewithamobilityaid
Was blessed with this awesome new Oxygen Bag 💼 today! It is so much lighter than the one I had before; including a top handle that is easier for carrying without dislocating your wrists and shoulders! Inside is an insulator to make sure the chemicals of the air does not mix in with the filter. But, I think the best part of this bag is all the pockets!!! 😻 You can find this one, plus similar ones right at #Christmastreeshop for an affordable💲price! #oxygenbag #oxygenmask #oxygenbar #oxygentank #oxygentherapy #oxygentreatment #spoonie #spoonieliving #tubie #tubieproblems #rarelydiagnosed #ehlersdanlossyndrome #potsie #zebrastrong #veds #dysautonomia #cptsd #gerd #collagen #tachycardia #ballerina #balletdancer #balletlife
Someone posed the question “what do you wish most for?” My answer was for Sawyer not to be in pain every second of every day. There are so many huge things happening in my life and I often think I should wish for those things but in the end I always hope, pray, wish for my daughter to feel better. When it comes down to it that is all I want. There are so many things we need but it’s hard to focus when your child endures so much all the time. All I can do is take one breath at a time and keep trying. My wishes have changed over the years that’s for sure. #momofmedicallycomplexchild #ehlersdanlossyndrome #zebrastrong #pots #dysautonomia #centralsensitization #visceralhyperalgesia #chronicpain #pediatricpain #fragilebutunbreakable #momlife #onebreathatatime #onemomentatatime #everymomentpasses #wishes #dreams #whenitcomesdowntoit #raredisease
I miss my infusions
When two service dogs meet in a restaurant, they should not acknowledge one another or the food. Great job pups! @creed_the_sd #servicedog #medicalalertdog #cardiacalertdog #syncopealertdog #dysautonomia #pots #type1diabetes #chickfila #distraction #training
To wander, is an adventure. Spent the day out with friends to love on all the nature 🌳🍃🌲💚
So sometimes when you have a natural alerter- you have to work on shaping the way they alert during the dog’s natural alert. I’ve had the Chiari headaches all day but they eased off for a while. However it’s starting to lightning and thunder and Kaz started alerting to impending headaches/migraine again. His natural alert is to climb in my lap or whatever he has to do to lick my face/neck. For obvious reasons this wouldn’t work if we were at let’s say a restaurant. His alert for high heart rate is to put his head in my lap, so for this I wanted to change his alert for migraines/Chiari headaches to bumping my hand. So when he started alerting I started asking for the alternate command which we’ve previously trained. The first video is a blooper of sorts. He gets frustrated easily if I don’t listen and so he started offering behaviors such as paw. Then you see him climb in lap and start licking which is his natural way of alerting. The second video shows him bumping my hand in the way I want him to for his alerts. It’s not perfect yet but he’s getting there. We also practiced some anxiety tasks and more dysautonomia alerts (heavy breathing) while I was feeling ok (third video). My heart rate is better under control now with the new meds and fluids but I still have dysautonomia. This can cause dizziness, shortness of breath, and profuse sweating when standing. So I’m trying to get him to notice these things as well so he can still alert even if my heart rate isn’t up. A service dog is never done training. Sorry for messy apartment- joys of packing. But since he alerted I am about to take meds and go to bed.
im almost nearing my dia-versary in late June, which im kinda proud about????? also things are kinda going both positively and negatively at the same time, some new discoveries about my body have been made in the last week that im not exactly ready to share yet. anyways heres a pic of me in washington!! #chronicillnessawareness #dysautonomiaawareness #chronicallyfabulous #chronicillness #dysautonomia #orthostaticintolerance #orthostatichypotension
I’m here for my relay, but Bart Yasso isn’t 😢. His flight was cancelled at the last minute so he didn’t make it to VT. I had a chance to meet the rest of the team tonight and they are fast! I’m on an all male team of runners with another young woman being pushed by her dad in a wheelchair, and I’m definitely the slowest. I’d better run well tomorrow!!! 😱 I hope my pacemaker doesn’t screw me up! #lymedisease #pacemaker #biotronik #chronicillness #runner #running #runitfast #runtoinspire #race #marathon #instarun #instarunners #instarunning #butyoudontlooksick #athlete #dysautonomia #run #womenrunning #fitspiration #fitspo
When I take off the rose colored glasses, I see the truth and that is so beautiful. What are you grateful for today? Remember that even in the most trying times, there is still beauty and goodness. We don’t need to walk around with rose colored glasses or try to skew the difficulty. If we simply stop, breathe, and swap the rose colored glasses for some gratitude glasses, things become even more beautiful.
Stay grinding when and where ya can, back to packing ✌🏼
lol the last time I walked around the city I literally couldn’t walk the next day but I’m doing this again tomorrow so who cares LEGGO
Is there anyone else who feels that once you talk about your illness to someone once, they don’t want to ever talk about it again? They quickly try to change the topic or they seem inconvenienced or something? I know it’s not a positive topic but it’s something I struggle with everyday. Unfortunately, pain and illness never leave my mind. There’s not a moment where I forget I’m sick because there’s so much wrong in my body. I have to be so cautious with everything I do in order to prevent flares and damage. I’m not able to forget about it. But I still often feel guilty or like I’m bothering everyone when I talk about my illnesses for once. It’s hard to have something you struggle with everyday but you can’t really talk about it. I feel like people in my life just kinda expect me to be positive or keep my battle hidden. I just wanted to see if anyone else feels this way. #chronicillness #spoonie #spoonielife #bipolardepression #bipolar #mcas #mastcellactivationdisorder #pots #dysautonomia #eds #heds #zebrastrong #butyoudontlooksick
Piper: My girl and Mom made it through the first day of @dogbowlfun and had a great time! We knew we would have a great time meeting some of you, but we weren’t sure how my girl was going to hold up with such a long day and high temps. Other than being a bit sun burnt(even with regular sunscreen application) and having a lot of blood pooling from her POTS(postural orthostatic tachycardia syndrome) my girl’s body did it! The wheelchair made today possible for my girl along with the great treatment she receives from her allergist and endocrinologist at the Cleveland Clinic! I can’t wait until I can come too! My girl would love to meet more of your there tomorrow! #servicepuppiper #opietheservicedog #servicedogintraining #vizsla #wirehairedvizsla #vizslapuppy #dogshow
Trying on bathing suits for tomorrow and part of me doesn’t like what I see, but the other part of me can’t believe that this is what I see! Who is that girl in a bikini??? Me! I have only worn a bikini in front of one other person and it was just in a hot tub. Wearing it with family at the pool tomorrow will be scary, but I’ve earned it. 💪🏻👙 #bikini #highwaistedbikini #weightlossjourney #weightlosssurgery #weightloss #verticalsleevegastrectomy #gastricsleeve #bariatricbabes #bariatricsleeve #bariatricsurgery #wls #vsg #wlsjourney #wlssupport #wlscommunity #vsgsurgery #vsgcommunity #vsginstacrew #pots #potsawareness #dysautonomia #potssyndrome #potsie #chronicillness
I put a little extra effort into my workout today. Not because I have to, but because it means something to me. Every extra push-up or a few extra reps reminds me to be thankful for what I have and to appreciate each day. I will always be grateful to those who paid the ultimate sacrifice for our country. It means an immeasurable amount to me, not just this weekend, but every day. 🇺🇸❤ . . P.S. Excuse my angry face in the first picture. There was a creeper in the gym, and I make a habit of staring him down--hard to change my expression after that. 😂 . . . #memorialday #forevergrateful #freedomisntfree #rangerup #rangerupapparel #poppyleggings #nevergiveup #keepgoing #chronicillness #dysautonomia #pots
Yesterday was the best I've felt after a physical therapy session yet. . That's not to say it wasnt hard. At one point I felt like I was going to throw up every meal I've ever eaten but thankfully I kept it down and took a short break. One exercise in particular is just as bad as the first session and it's the only one that makes me queasy. I also had to take a couple breaks during the portion that focused on legs. . Still, I increased my weights and reps for my upper body movements and I just felt pretty decent throughout. My heart rate was only pretty bad in one spot so that's a win. Afterwards my physical therapist discussed the potential of doing PT in a pool maybe sooner rather than later. I have some issues with the pool that I won't discuss here but if it will help me I need to be open to it and I am. He believes that I will be able to do more in the pool for a number of reasons. . The biggest reason is the pool offers some natural compression and the way your body acts in the water, blood pooling slows way down. This is something everyone with #dysautonomia / #POTS should know. I'm not quite ready to be there yet but hopefully when I am I will progress even faster. Don't worry though, you're not likely to see any pool pics out of me. I'm not trying to scar anyone with me not wearing a shirt :) . . Didn't get much walking in today but I focused on arms which felt great so I'll take the good with the not as good. Hopefully the weather will allow me to walk more tomorrow. . While I'm here thanks to my fellow Virginians for reading my Medicaid expansion posts. I know they're boring and not fun but it really is an important issue that people need to know about. . More of that content you really want - another pic of the old man surveying the neighborhood. . #defeatdysautonomia #posturalorthostatictachycardiasyndrome #potsawareness #chronicillness #learningtowalkagain #physicaltherapy #progress #pushthroughpain #staypositive #doggo #oldman
Sought out a hilly neighborhood to practice gear shifting/ aero in preparation for Onalaska’s landscape. Add friendly waves and words of encouragement from total strangers, no traffic, proud flags waving, and the aroma of smokers? Yes, please and thank you!! 25+ miles down on this gorgeous perfect ride 🇺🇸 . . #americanstyle #memorialdayweekend #texas #blessed #bike #perfectride #onalaskabound #edsathlete #triathlon #physicaltherapy #fitness #ehlersdanlossyndrome #dysautonomia #chronicillness #fragilebutunbreakable #zebrastrong
What a great day. GOOD VIBES ONLY #hope4austin #dysautonomia #goodvibesonly
I have been missing out on life for years due to so many issues with my health! Many date nights with my husband would have to be cut short due to me feeling so poorly. I thought that I would have to accept where I was at because everything I had tried did not work! See if you can identify with me with any of the following: Low energy/fatigue Trouble going to sleep and staying asleep Digestive irregularity/Constant bloating Brain fog/Unable to focus Feeling Sad or Nervous Sluggish metabolism/Trouble losing weight Cravings for sugar and caffeine Headaches Unexplained soreness/Stiffness Skin problems/Reactions Any of these sound familiar to you? It has all changed for me recently... the plant based supplements I am taking have helped me in ALL of these areas! Have you tried every option and don't know where to turn? Would you be open to talking to me more? . . . . . . #theHealingFromWithin #guthealth #plantbased #healthandwellness #healthyinsidehealthyoutside #bestoftheday #instagood #gastroparesis #chronicillness #dysautonomia #instamood #photooftheday #neurocardiogenicsyncope #beautiful #instadaily
Yup. Every time......
Breakfast in bed. How do you like your vegemite? Me, with tons of butter thanks. #aussieaussieaussie #yum #BreakfastInBed #CantMoveToday #StoopidBody #ChronicAsFuck #dysautonomia #fibromyalgia
Where I got to work today...relaxing actually. Did lots of painting, up and down stairs, squatting, kneeling, bending over, over and over again. Normally, I’d be close to passing out. My heart rate monitor was going off all day, but today was a good day. No pain. No fatigue. No headache. I felt normal for the first time in a long time. Just something about being around water. #ehlersdanlosawarenessmonth #ehlersdanlossyndrome #littlevictories #dysautonomia #boating #boatinglife #centralnewyork #syracuse #oneidalake #cuse #zebrastrong
✨my best friend of 13 years came to visit me since she’s in town for the birth of her nephew. She moved two states away a while back and I’ve missed her so much. Friends are so important, and she is just so wonderful. As you can tell, I just love her so much. I had to wrap my arms around and push my face on hers 😭 She has seen me go through everything and is always accepting of my limitations. I love this girl so much!! Her name is Mackenzie and she is the most magical and beautiful human on this planet. 💛🧡❤️ #besties #reunited #bestfriendsforever #chronicillness #chronicpain #chronicfatigue #eds #heds #ehlersdanlos #ehlersdanlossyndrome #hypermobility #pots #dysautonomia #mcas #mcad #mastcell #IBS #IBD #chronicgastritis #mastcellactivationdisorder #mastcellactivationsyndrome #spoonie #zebra #zebrastrong #ilovemybestfriend
When years of being sick is finally acknowledged and validated with a proper diagnosis but now you have to blindly pick a LLMD who actually knows how to treat you AND the disease(s)... #thisismystory #tobecontinued #shitdoctorssay #lymediseaseawarenessmonth #thelymelabyrinth #lymediseaseawareness #invisibledisease #lymedontkillmyvibe #chroniclyme #autoimmune #lymewarrior #pots #dyspnea #dysautonomia #aip #healinglyme #adrenalfatigue #babesia #bartonella #awarenessforacure #findingacure #newchapter 📸: @slake856
I ordered a new pill organizer since one of my purple ones broke and I missed having one 2 part organizer. And oh my goodness it’s HUGE. I was not expecting it to be this big. Other than that I like it, but I can’t get over how much room it takes up. • And of course, after a month of looking for my old 2 part pill organizer, I finally came across it today. It’s too late to return the new one now. Only time will tell if I stick with it or go back to the old one that I found. • • I feel so boring going on about pill organizers. But I’ve been so run down the past few weeks since pushing myself Mother’s Day weekend that all I can do is lay in bed. I want to feel better so bad but the heat and this sinus infection aren’t helping. • • • #pillorganizer #pillcase #spooniepets #spoonielife #chronicillnesslife #spoonie #chronicallyill #chronicillness #invisibleillness #potsie #posturalorthostatictachycardiasyndrome #pots #dysautonomia #chronicfatigue #chronicpain #chronicillnesswarrior
It’s supposed to be 97 degrees here tomorrow.... might as well start digging my grave tonight 💀😩
My first #bathtub #selfie ! So #hawt ! It actually really was without the air conditioning hooked up yet. 😂 I felt like a sweaty Cinderella in my #slippertub . I cannot wait to use it for real. So comfy. Will be so wonderful to have a tub to soak in again. 😌 Getting super close to moving day. 🔥😃🏡#foreverhome #loghome #theoriginallincolnlogs #livinginthenownotthen #LINt ...#ehlersdanlosawareness #osteoarthritis #invisibleillness #zebraspoonie #spoonie #spoonielife #chronicillness #hEDS #fybromyalgia #butyoudontlooksick #dysautonomia #complexregionalpainsyndrome #fullhipreplacement #spinalfusion #spinabifida #spondylolisthesis #centralsensitization #thoracicoutletsyndrome #basilarmigraines #asthma #mastcellactivationdisorder
It’s been a rough day. The tropical storm system is messing with me pretty badly. My #chiariheadache is always worse with storms and so is my #dysautonomia . The only thing that is seeming to help the headaches is to stabilize my neck. Kaz and Athas are chilling today, thankfully allowing me to rest. Praying this storm dissipates quicker than expected. It’s expected to last all week 😰. - - Check out our pawtners 🐶🐕🐾 @fantastic_fin_fry @hearingdoghanalei @cai.the.service.saviour @sdit_atlas - - - - - - #chronicillnesses #chronicillnesswarrior #servicedogteam #respectthevest #medicalalertdog #posturalorthostatictachycardiasyndrome #POTSieSTRONG #dysautonomia #chiarimalformation #chronicpain #chronicfatigue #traumaticbraininjury #ehlersdanlossyndrome #eds #zebrastrong #ComplexPTSD #mastcellactivationdisorder #connectivetissuedisorder #goldenretrieversofinstagram #goldenretrieverservicedog
It took four hours of on and off resting before we got all the gear ready to go, but we made it out on the water. The best past about stand up paddleboards is that it doesn't actually matter if you stand. They work just fine laying, kneeling, or sitting criss cross. And none sick people even use them that way, especially in the wind! I had thought about getting a kayak, but I am really happy with this since I can lay down so easily. I've grown incredibly fond of water sports since losing the ability to run. #dysautonomia #posturalorthostatictachycardiasyndrome #chronicmigraine #fatigue #SUP #standuppaddle
I’m just imagining that my gluten free crust is just as glorious as theirs. 😆 Truly, I won’t miss the screaming joints or heavy brain fog. #glutenfree #itisworthit #dysautonomia #chronicillness #potsyproblems #eatforhealth #posturalorthostatictachycardiasyndrome
A quick recap on my feeding tube situation to explain yesterday's post (check out previous posts for more details) - I've had my GJ tube since 2014 but have had a lot of issues with it migrating back into my stomach (it is supposed to stay in the jejunum, the middle part of the small intestine) which makes me sick. And the balloon in my stomach that holds it in place ruptures after a few weeks, leaving the tube to wobble around and cause painful granulation tissue. Also, GJs have to be changed every 3-4 months (mine usually more often) so I am at the hospital a lot. So I decided I wanted to try a dedicated J tube to hopefully eliminate those issues. The surgery, in October 2017, was difficult and much longer than expected. And the complications began right away. Recovery was awful and long. I lost weight and got into a dangerous nutrition situation, so had to go back to my GJ as we worked out the J situation. I had several different J tubes, but after 7+ months of trying, I finally had to accept that my body just can't handle it. Any time I used it I got cramps, nausea and other unpleasant symptoms. Luckily, I still have my GJ, and strangely enough things have actually gotten better with it. So that's the short version of why I had my J tube removed this week. Yes, it was hard, I suffered a lot and it didn't end up working out. But I feel OK about it. I feel compelled to do everything in my power to improve my quality of life, and not every chance I take is going to help. I've had a lot of other abdominal surgeries and they were all life changing in a positive way, so I can't be too upset about one failure. Although I did learn something important - my body can't handle a J tube. By the way, my fever is down (but not gone, yet) and I feel much better, although still sick and in a lot of pain, so almost definitely no infection! I am so so relieved. The past couple of days have been been up there at the limits of what I can stand, and have really taken it out of me. But I think the danger is past and I'm heading in the right direction now. Thank you for all the kind messages and support! I ❤️ you guys! 😊
London has lit up!!!! #lightning is everywhere 😍 ⚡️⚡️⚡️ . . . 💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜 . . . . . . . . . . . . #chronicpain #chronicillness #spoonie #ibs #eds #asthma #fibromyalgia #disabled #hypermobility #london #ehlersdanlossyndrome #chronicfatigue #pots #pain #Dysautonomia #painrelief #spiritual #edsawareness #london #storm #weatherwatchers
I am officially a law school graduate! ⠀⠀⠀⠀⠀⠀⠀⠀⠀ At my undergrad graduation (#fighton #gotrojans !), I was thrilled to be done with school forever. 8 years and different jobs in between, too many chronic illnesses to count, many non-believers (including me many times), 3 years of law school, a LOT of tears, and here we are! I’ve got my Juris Doctor (as of last weekend), and only the California bar exam stands in my way now. If I can accomplish what all my doctors said could never be done, then anyone can truly do almost anything they passionately believe in and set their hearts on achieving. ⠀⠀⠀⠀⠀⠀⠀⠀⠀ #jurisdoctor #classof2018 #jd2018 #lawschoolsurvivor #invisibleillness #invisibleillnessawareness #attorneyproblems #lawschoolproblems #lawstudentproblems #study #studyinspo #studyspo #spreadpositivity #lawstudent #lawschool #believeinyourself #gobeyond #futureisfemale #ellewoods #legallyblonde #legaljargon #whatlikeitshard #chronicillnessawareness #dysautonomia #potsie #ehlersdanlossyndrome #edsawareness #autoimmunedisease
making a YT video! comment some questions for us to answer?
It’s 23:04 and I’m just in bed watching the lightening and worrying that Frank is going to get electrocuted during the night. I am a big irrational thought thinker, so this definitely adds unnecessary stress to my already stressed brain. • • I’m also now facing the consequences of taking Provera and these period pains remind me of why I haven’t taken them in 18 months 😬 • • #pots #posturalorthostatictachycardiasyndrome #eds #ehlersdanlossyndrome #pcos #polycysticovariansyndrome #celiacdisease #celiac #aspergers #dysautonomia #tachycardia #ocd #bingeeatingdisorder #obsessivecompulsivedisorder #chronicpain #chronicfatigue #chronicillness #invisibleillness #depression #anxiety #spoonie #zebra #warrior #chronicallyill #chronicillnesswarrior #spooniecommunity #spoonielife #spoonieproblems #glutenfree
Jobst and Farrow Medical compression stockings and sleeves are on sale now! Save an extra 10% off with code JOBST2018 - only at BrightLifeDirect.com #jobst #farrow #swelling #compressionstockings #bloodclot #spoonie #sale #dealoftheday #armsleeve #dysautonomia #compressionsleeve #lymphedema #save #discount #dvt #pots #bloodclotsurvivor #compressionarmsleeve #varicoseveins #compressionsocks
POTS stands for postural orthostatic tachycardia syndrome. Breaking POTS down based on its name can provide insight into the condition: Postural means the condition is related to the posture of the body. Orthostatic also suggests the body's position is involved and refers to dizziness and a sudden drop in blood pressure. Tachycardia means a rapid heartbeat, generally over 100 beats per minute. Syndrome means it is not a disease but rather a group of symptoms that are often seen together. POTS is characterized by an increased heart rate, drop in blood pressure, and dizziness upon standing. This happens because the heart does not get enough blood when a person stands up, so the heartbeat increases to try to improve the blood circulation. POTS is a type of dysautonomia, which are disorders of the part of the nervous system that regulates blood pressure, heart rate, and breathing patterns. #potssyndrome #posturalorthostatictachycardiasyndrome #pots #autoimmunediseases #mononucleosis #dysautonomia #nineyears
Happy #stackdogsaturday 💕😌 I took and edited this photo ages ago, but never posted it. I can’t believe how much he’s matured even since this photo was taken!! I will hopefully be more active soon, just currently have a lot going on and don’t have a computer compatible with my editing software at the moment. ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀ Image description: Dragon, a sable GSD, standing in a 3-point stack at the edge of a lake. He is wet, and facing to the left, with a calm expression on his face ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀ 🐾Follow our pawtners:🐾 @adventures_of_magnolia @mama_bully @savageservicedog @riahfaye @gunnerthesd @desert_k9s @fattymcrunnerpants #servicedog #lupus #epilepsy #ehlersdanlossyndrome #mastcellactivationsyndrome #dysautonomia #POTS #autoimmunedisease #connectivetissuedisease #gsdsofinstagram #germanshepherdsofinstagram #workingdog #dragonthegsd #universityofkentucky #germanshepherddog #dogsonadventures #thegermanshepherdworld #fitdogsofinsta #GSD_feature #gsdloverss #workinglinegsd #forevergermansheps #dogphotography #instagsd #gsdlife #dogstagram #gsdlove #gsdstagram #gsdunited
Happy Saturday everyone! My lovely sore throat turned into an evil cough so I've been sleeping most of my Saturday away and watching #13reasonswhy while I'm awake. . Luckily, I have a "On-call Dr." to get me the meds I need when shit hits the fan. And i have my shokie who photo bombs all my pics. . Hopefully I feel better tomorrow so I can enjoy some of this holiday weekend. . . #chronicillness #autoimmunedisease #copd #pots #pills #spoonie #netflixandill #nebulizer #asthma #antibiotics #meds #shorkiesofinstagram #shorkielife #shorkie #dysautonomia #albuterol #herbaltea #mdw
I can hear and feel my pulse almost alllllll the time. Sometimes it’s even so loud that I can’t hear anything at all😂😂 #posturalorthostatictachycardiasyndrome #chronicillness #dysautonomia #pots
Recovery from this surgery has been hard on my momma. She has had some pretty terrible days due to the pain of this surgery but she’s still fighting. 👊🏼 Because she hasn’t been mobile, my job has mainly been to comfort, cuddle and make sure she doesn’t fall when walking. As you can see in this picture, I’m taking my job seriously 💪🏼 (I’m also just a big cuddle bug and I want constant contact with my momma) I’ve also been super attentive to her POTS and have been able to alert the family when she passes out. I’ve been such a good boy (on most days 😉) so I’ve been rewarded with lots of peanut butter Kong’s and chews 🤤 I may not be able to train like I was before this surgery, and I’m a little bit stir crazy being in the house so much (I still love my exercise) BUT momma is slowly improving which means that we will get to work hard together again soon 🤗🙌🏼 • • • • 15 months old🤘🏼 • • • #servicedog #ServiceDogInTraining #WorkingDog #DogTraining #DogsOfInstagram #Cute #germanshepherd #Puppy #Instapuppy #australianshepherd #doodlesofinstagram #PuppyLove #InvisibleIllness #ChronicIllness #Dysautonomia #EhlersDanlosSyndrome #ChronicPain #Instagood
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