#mctd

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Today is Day 3 of 20mg of prednisone. I took the burst to cope with Christmas pressure. Abd today I have energy! My RA is honestly mild, and my lumbar pain is reduced, tho still constant. I can walk unassisted tho! My gastro symptoms have also resolved. Swallowing is still problematic, but I can eat soft, solid food! Now I have to choose...Christmas shop or fix the things around here that need fixing? I have two door locks that are driving us all nuts that need replacing. And im halfway through replacing the blinds. So i think shops can wait. EVERYONE will be there...i can go one day this week when other people will still be at work. And this afternoon Im going to take a few hours for myself to spend creating music. Its been far too long between sessions. Music was always the best way to destress. I can no longer play guitar but there are other ways. And i am ready to learn! Thanks to my amazing friend and ex bandmate, im inspired again. Thankyou Rob xx #prednisone #energy #temporaryreprieve #ra #spondy #mctd #eoe #crohns
Yes! Thank you fed ex dude! And thank you @maryjanesapothecary420 ! I'm so thankful this came on such a high pain day! #cbdoil #charlotteswebcbd #highpainday #mctd #ChronicPain #spoonie #chronicillness
When a flare strikes, I feel like one of Picasso's work of art. 🤣 #flare #mctdphwarrior #mctdawareness #mctdpositivity #mctd #photosensitive #photosensitivity #sunallergy #uvallergy
On the ELEVENTH day of Christmas, Lupus WA gave to me… colouring fun! The holidays are a busy time for all of us but it’s important, especially as Lupus patients, that we remember to take time out to recharge. We keep hearing about the awesome benefits of mindfulness colouring so we’re giving you this Lupus constellation colouring page from supercoloring.com. If you’re keen for more you might like to visit Amazon for a sneaky gift to yourself (you find the link on our Facebook page!): https://www.amazon.com/Lupus-Living-Color-Antistress-Activity/dp/0997193409.
Morning I know this is nothing to do with home exactly but I do know there are lots of people on these pages suffering with illnesses. So shout out to @nbabowelawareness please follow the page.. it’s aim is to build awareness and understanding of rare illnesses autoimmune linked illnesses and bowel disease ... thankyou 💪👏😘 #spoonie #spoonielife #spooniecleaning #chronicpain #chronicpaincleaner #livinginpain #fatigue #fatiguecleaner #awareness #ibd #bowelcancer #chrones #colitis #athritis #autoimmunedisease #autoimmune #lupus #mctd #vasculitus #rareillnesses #depression
So who else had no sleep? Why is it that I was awake all night and now I’ve got to get up I’m struggling and could fall back to sleep 😡 As a spoonie always sleep deprived due to toilet runs and pain waking up. I had a worse night than usual last night and feel like phoo. But I want to get up now and could fall asleep in a second right now... #autoimmunedisease #nbabowelawareness #fatigue #insimonia #lupus #vasculitis #mctd #cancer #arthritis #spoonie
Healthy Carbs!!! Beyond thankful that FASTer Way to Fat Loss® taught me how to properly incorporate Healthy Carbs into my everyday snacks and meals. Yes, I'm guilty of being a former carb cutter. Have you cut carbs to get quick results but end up right back where you were? Plus no energy from lack of Carbohydrate nutrients that your body needs to function properly? Do you want to fall in love with carbs again, learn to fuel your body with whole foods, increase energy, sleep better, and turn your body into a fat burning machine?? Secure your spot!! Prep week for FASTer Way to Fat Loss® begins December 31st!! Click on the link in my bio for more information⬆️ #fasterwaytofatlosscoach #ieatcarbs #macronutrients ##inflammationfighter #workingmom #granolaforthewin #healthyholidays #treatday #nonscalevictories #mctd
At-home Oxygen Hose Situation Test #2 : ...and now I feel like I’m doing a Christmas package impersonation, being all wrapped up in tape! ================================= #pulmonaryhypertension #pulmonaryarterialhypertension #ild #oxygen #mctd #scleroderma #systemicsclerosis #telangectasias #unhappylungs #coldandflu #flubug #oxygencannula #oxygenproblems #professionalpatientproblems #mylungssuckatbeinglungs #medicaltape #siliconemedicaltape #preventativemeasures
My little slice of heaven and joy @cincychildrens is their gift 👛shop!! Thank you to the amazing 🌟Dr. Mina 🌟 who has helped our family for 9 years. 💕 I don’t know what we would do without her and the rest of the #rheumy team. Dr. Brunner, Tracy and Judy all go above and beyond. #rheumatology #pediatricarthritis #mctd #cincinnatichildrenshospital #lupus #raynaudfamily #healing
Yes it’s Day 13 and I’m still at it!!! Outta finish strong!!! 8 days left!!! Over a gallon of water today!!! I had someone at the gym say I was getting little... who me?? 😝In my Rihanna voice, Work, Work Work, Work!!! 💪🏾🚰💃🏽#lu21day #13down8togo #work #stillgrinding #thickthighssavelives #progress #progressoverperfection #lupuswarrior #sjogrens #raynauds #mctd
Back at it! Pregnancy & mamahood certainly can take a toll on the body & health, so I'm balancing lack of sleep with some Myers Nutritional IV therapy! With having a raised autoimmune marker and high cortisol again, my bodybneeds a little extra TLC. If you have never heard of such thing, it's a nutritional cocktail injection including B vitamins, magnesium, and Vit C - also great if you feel under the weather or before/after travel to give your body a boost 😁. On another note, my doc and I decided to go ahead and lower my Tirosint again since I seem to be just fine since my last lowering of dose. That much closer to weaning off 🙌. I am going to try to use lavender and copaiba oils topically and see how it affects my cortisol and we are qlso planning to retest my autoimmune markers in a couple months to see if there are any changes 🤞 . . . . . . . . . . #earthymamacado #healthjourney #nourishthebody #letfoodbethymedicine #guthealth #grainfree #autoimmuneprotocol #nutrientdense #antiinflammatory #glutenfree #hashimotos #autoimmunedisease #eliminationdiet #travelblogger #mamablogger #naturalbaby #naturalmama #autoimmuneblogger #paleoblogger #aippaleo #mctd #healingautoimmune #postpartum #naturalhealing #myerscocktail #adrenalfatigue #newbornlife #thyroiddisease #selfcarelookslikethis
Last year at this time I could barely walk up stairs. I just finished a MMA workout and barely broke a sweat. There is no such thing as can’t. For all my friends fighting chronic illness, stop saying you can’t and overcome your obstacles. #wellness #chronicillness #MCTD #autoimmunedisease
‘Tis the season to be jolly! Christmas is upon us and celebrations are in full swing. As you begin to give to your friends, family and community, we at Lupus WA want to remind you to also give to yourself. That’s why we’re counting down the twelve days until Christmas with twelve self-care activities that will help you to give your body the gentleness it deserves. Here’s to a festive season of wellness! On the TWELFTH day of Christmas, Lupus WA gave to me… the sound of music! Music is an incredible stress reliever. Whether you’re belting out a Christmas carol or getting your body moving with a good old-fashioned dance off, let this be your reminder to let music into your life today. You can read more about music and Lupus at the Lupus Corner (also available via our Facebook page): https://lupuscorner.com/stress-lupus-music/.
❁︎ . . 月1検診day🏥💉 . . きょうも経過良好🙆‍♀️ . 年末年始ってことで ステロイドの減量は今回はナシ。 . . 急に寒くなってきたね〜☃︎❄︎ . 風邪・インフル・その他もろもろ… ウイルス、感染に気をつけて 年末年始も穏やかに過ごせますように👏💕 . . みなさんも体調崩さないよう 気をつけてください(´・ω・`) . . #病院 #通院 #検診 #膠原病 #混合性結合組織病 #mctd #膠原病女子 #膠原病ママ #血球貪食症候群 #難病 #甲状腺機能低下症
"He's just a boy, pretending to be a wolf, pretending to be king" Maurice Sendak, Where the Wild Things are. . Unleashing my inner wolf into the night, letting my imagination lead me where it feels right. . #nightrun #nightrunner #nightrunning #suunto #strava #stravarun #run #urctribe #ultratraining #runwild #runfree #getoutside #imagination #nevergrowup #autoimmunerunner #mctd #runningismytherapy #nevergiveup 💪 #altrarunning #lonepeakneoshell #cotopaxi @territoryrunco #runnersofthewild #soresolesfuelthesoul
#WCW - Me. It’s a must that we appreciate our good moments, our good days and our bad days. Since May, I’ve had some really bad days and some good and great days in between. The worst of those days coming after I lost my mom without having a chance to say goodbye. I miss and love you so much Ma! But I realize in my moments of clarity that I’m stronger than I’ve ever been. I’m a good person, but that doesn’t guarantee all good days. Bad things happen to good people. Job had unwavering faith through all that he went through, I’m learning to do the same. My health has suffered. My mental heal has been compromised(you will understand this if you’ve experienced a loss or a major health issue). But through this challenge, it actually has renewed my passion for health communications, the importance of family and friends and SELF-CARE! Trust me, I learned the hard way. I will soon share my story. This is huge, I’m a private person, but I know that going through and learning is not for me. It is for me to continue to help a lot of people. So with 19 days left in this year, I’m preparing myself for all that I WILL CONQUER IN 2019! My health, career, businesses ( I Want Mo Hair, WE Brunch, About Her Business, LLC) social life, love life....Thank you Lord. I receive all the blessings with my name on them! P.S. If you thought I was “amazing” before, just wait. You ain’t seen nothing yet. #health #gersontherapy #keto #monathaircare #aboutherbiz #mctd
So I finally got my weighted blanket!! Happy birthday to me!! I’m soooo excited!! I’ve always had anxiety and years again it was so bad I had a hard time functioning in basic every day activities. While I’m extremely thankful the worst days are behind me I still suffer from some anxiety. This blanket is so calming and super soft!! Also the putter layer unzips and comes off so you can wash the shell!! I got the appropriate weight for my body and even with my chronic illness and pain it doesn’t seem too heavy. I would recommend this to everyone!! . . . . . . . . #weightedblanket #weightedblankets #chronicillness #chronicillnesswarrior #chronicillnessawareness #ibs #ibsawareness #spoonie #spoonielife #spoonieproblems #spooniestrong #lupus #lupusawareness #mctd #mctdawareness #mixedconnectivetissuedisease #anxiety #anxietyrelief #anxietyproblems #anxietyrecovery
Its been 14 months since I began running and I'm 1400 miles into 2018. Maybe it's nothing to some, but for me it feels great to come this far. . I'm also still waiting for my muscle biopsy results which are now a week overdue, so I churned the 7 miles I needed this morning in the fog and cold and let my brain have a rest. Time well spent. This waiting game is no fun. . #run #runner #running #trailrunner #trailrunning #runnersofinstagram #igrunners #urctribe #ultratraining #strava #stravarun #foggy #autoimmunerunner #mctd #runningismytherapy #nevergiveup 💪 #altrarunning #cotopaxi #territoryrunco #runnersofthewild #soresolesfuelthesoul
This little product right here Is essential for the Holidays! It blocks 48% carbs and sugars. #yougottagetyousome #carbs #sugars #reysyndrome #slim #pinkdrink #diabetes #lupus #hashimotos #autoimmunedisorder #mctd #diabetes #
It’s a beautiful thing to have lungs that allow me to breathe full breaths, and legs that allow me to climb these cliffs. It’s a shame that sometimes we don’t realize that’s enough. Trust me when I say, life is short, and it can end at any moment. Be grateful for what you have, because it can always be worse. Most of us can move our bodies, see vibrant colors, smell the fragrance of our favorite flowers, and so much more. Isn’t that absolutely amazing? . . What are you grateful for? Comment below 👇👇 . . . 📷📸: @cwagnerphotography . . #yoga #yogi #health #wellness #mctd #namaste #grateful #gratitude #photography #travel #beach #california #love #light
today. i’m equally as thankful for my health as i am mad at my body. 🖤
Today, I started back at square one, I still definitely have Fibromyalgia (which alone is known to cause all the issues I have) but more blood work was ordered to single out other autoimmune diseases. Hopefully, my “further testing” comes back good & I can say that I don’t have all the things the doctors told me I did a few years back (I will gladly take just Fibromyalgia as a diagnoses) but as for today- I have no more answers than I did yesterday. Just more hope that I was misdiagnosed back then (and a little less blood 😉) . . . #autoimmunedisease #fibromyalgia #lupus #itsneverlupus #sjogrenssyndrome #mctd #invisibleillness #chronicpain #fatigue #laundrylistofissues #fingerscrossed #hope
Happy Wednesday friends and family! Love you all!!! Stay safe and God bless you all! 💜💜💜💜💜💜 #maltipoo #maltipoosofinstagram ❤️🐾❤️ #blackdogs #smalldogsofinstagram #floridapupsofinsta #lupusawareness #mctd #sclerdermaawareness
One of the greatest gifts you can give someone with chronic illness is understanding. Just because we can't do certain holiday events or activities, doesn't mean we don't want too. #chronicillness #autoimmunedisease #rheumatoidarthritiswarrior #spoonie #spoonielife #rheumatoidarthritis #lupus #fibromyalgia #mctd
If I could give my daughter 3 things, it would be the confidence to always know her self worth, the strength to chase her dreams and the ability to know how truly, deeply loved she is. 💜 #6monthsold #baby #love #girlmom #babygirl #invisibleillness #fighter #chronicillnessfighter #autoimmunedisease #outofspoons #butyoudontlooksick #nomorespoons #beyou #beyourself #mctd #gastroparesis #spoonie #spoonielife #GabbyMarieSerne #mommy #daughter
As many of you know, this past year has been super rough for my health. Last October I started having EXTREME shoulder pain while in cosmetology school. Within 2 months I had a full blown frozen shoulder. This confused my doctors tremendously, a pretty much healthy 19 year old doesn’t just have a frozen shoulder. I went through physical therapy and it seemed to get better. However, I was still exhausted and fatigued all the time. I ended up withdrawing from cosmetology school. My doctors started to run more test, they thought I had a vitamin deficiency. Well, my vitamin levels were low, but my ANA also came back positive. My doctor told me she thought this was a FALSE POSITIVE, but was still going to send me to rheumatology. In the mean time, I was having other issues as well. My prolactin levels were very high, so I had to see an endocrinologist, he suspected I had RA. Also, we found out I have Factor Five Leiden, so I saw a hematologist who suspected Lupus. I went December 4th to see my rheumatologist for the first time. This time, he did a more in depth panel and found something interesting. My ANA came back positive, and my RNP levels were high. This led to his diagnoses of Mixed Connective Tissue Disorder (MCTD). This is a rare autoimmune disorder!! I feel so relieved upon this diagnosis, even though it sounds stupid. I feel so much better knowing despite what everyone assumed, it wasn’t “just in my head”, and I wasn’t “just fine”. I’ve truly been ‘sick’ this past year, and I can’t thank everyone who stood behind me and knew I was telling the truth enough. Blood work doesn’t lie folks. I might not EVER be able to finish hair school, or do everything I want, but I’ll always push myself as much as possible. Now onto a journey of feeling better. 🙌🏻 #MCTD #GravesGilbertClinic
Happy Wise Up Wednesday! Hydroxychloroquine, more commonly known as Plaquenil, is a common medication for autoimmune patients, but we should be aware that all medications have the potential to cause side effects. Visit our Facebook page to read about the link between Plaquenil and atrial fibrillation. Do you take Plaquenil? What have your experiences with it been like? . . https://lupuscorner.com/hydroxychloroquine-atrial-fibrillation/
Living with Mixed Connective Tissue Disease. My face with no filters, how my skin really looks lately. Yes I was crying, I’m alone and in so much pain and cold very, very, cold. No, I won’t go to the hospital, wait for hours to be told they don’t know what to do is not an answer. This too shall pass, let’s hope. #mctd #lupus #rheumatoidarthritis #sjogrenssyndrome #reynaudsphenomenon #schleroderma #fibromyalgia #exhausting #sickofbeingsick #spoonie #findmeacure #autoimmunedisease #100to0 #givemeamagicwand #nofilter #crymeariver
I hurt from my head to my toes. Living with Mixed Connective Tissue Disease. My invisible illness, “but you don’t look sick?” I go from feeling fine to feeling like I wish I could be in deep sleep and wake when the hurt is gone. #mctd #lupus #rheumatoidarthritis #sjogrenssyndrome #reynaudsphenomenon #schleroderma #fibromyalgia #exhausting #sickofbeingsick #spoonie #findmeacure #autoimmunedisease #100to0 #givemeamagicwand
Y’all we got this 💪🏼🙌🏼👍🏼 in the end lupus shows it’s face every time I try to have a good moment. It’s like BOOM smack you in the face. Lupus is saying “who the heck are you trying to kid?!” But regardless, I will choose to keep going. I won’t give up. And you shouldn’t either. Regardless of our situation it’s time that we make it the best we can. There is no point in always being upset. Pain sucks and it makes you miserable I know that! Because I live that. But I always try to poke fun at myself every time. Trust me, my rheum and the nurse probably think I have some screws lose 🤣 they probably aren’t wrong. I am trying to learn to choose joy 💁🏻‍♀️ we shall see how far I get. But don’t worry I won’t ever stop being real in my battle. And yes I’ll still have my pissed and crying moments. But that’s all apart of the journey. I know it’s not going to be perfect, and that’s OK! 💜 #autoimmunedisease #lupus #lupusawareness #knowlupus #chronicillnesswarrior #chronicillness #chronicpain #chronicfatigue #spoonie #spoonielife #butyoudontlooksick #invisibleillness #grow #growth #life #dontgiveup #youcandoit #believe #anxiety #depression #rheumatoidarthritis #curearthritis #ra #mctd
By Scott, yes I have! What else you got for me? Holy shit this. #mctd #thisisautoimmunedisease @pcosdepressionaidiseaseohmy for all things #PCOS #DEPRESSION #MENTALHEALTH #AUTOIMMUNEDISEASE #CHRONICILLNESS
体調の浮き沈みが激しくて、ひどい時は午前中全く動けませんが、今日はいい感じ🎶 . 最近、子供達に提供したお古のiPhone2台。 ゲーム機として使わせてますが、息子が今更ながらポケモンGOにハマってまして。 我が家はゲーム推奨派ですが、やる事やってからと1時間というのが条件で、最近、ポケモンをいじりたいが為にサクサクと宿題や洗濯物の片付け、ピアノ、準備を終わらせる様になりました(`・∀・´) マイクラやマリオではつれなかったのに...ポケモンすごいっ(☝︎ ՞ਊ ՞)☝︎ そして、ポケモン集める為に、朝父ちゃんと歩くっていうやる気(*⁰▿⁰*) (もちろん、ながらスマホは厳禁)ポケモン出てくるたびに立ち止まるので、父ちゃんはなかなか距離は歩けませんが(笑) . で、この息子がポケモンを開始した事により、私のポケモンの獲得キャラが「交換」というの形で狙われる様になりました_φ( ̄ー ̄ ) で、狙われ始めたら、私もキャラを集めとかなきゃと思い、今まで自転車行動だったのが最近徒歩。 . ちょっぴり体調よいです(笑) . 運動って大事。 . #ポケモンGO #iPhone #ゲーム #小学3年生 #運動 #混合性結合組織病 #MCTD #難病
OH LOOK IT’S MY FAVOURITE DRESS 😅😬🤦🏼‍♀️🤣 It really brings out my eyes...and my sense of humour. Luckily this time it was just on loan while I met with a new specialist, and got a stack of head to toe x-rays and all the bloodwork done. Today I met with a new rheumatologist to review my awesome ‘what DOESN’T she have’ autoimmune case and treatment. I was SUPER stressed out about it, not going to lie. But, at the end of the day, it was over. 😬 Because sometimes the only thing you can do to get through anxiety is to let that time pass you by! And sometimes you can’t sleep and go into your kids’ rooms and stare at them creepily until you feel better 👀- I talk about that in my latest post! (Link in bio! ⬆️) But most of the time I diffuse my anxiety with mindfulness, meditation, breathing and LAUGHTER! So if you’re going through a hard day, know that you’re not alone, remember ‘this too shall pass’, and if you need any more help I’ll send you the joke Kid Vader told me about the pigeon driving the truck. That should do the trick. ❤️ #begoodtoyou #staypositive
Unhappy girl with an unhappy update. My eyelids are still swollen, and now they’re red and blotchy which I have to say is NOT my best look. I have an appointment with an allergist on Monday, but honestly idk if this is allergy related because I’ve taken enough Benadryl and prednisone to kill a man and here we are. If anyone has any idea what this is don’t hesitate to chime in! #lupus #sle #ra #rheumatoidarthritis #inflammation #inflammatoryarthritis #arthritis #scleroderma #mctd #uctd #autoimmunedisease #autoimmune #eds #ehlersdanlossyndrome #spoonie #chronicillness #chronic #chronicallyill #rash #methotrexate #prednisone #antihistamines #allergies #allergy #plaquenil
Nope. NOPE. NOPE. NOPE. NOPE. NOPE. NOPE. Called my oxygen company... I honestly can’t believe that NO PATIENTS have ever experienced this problem with oxygen tubing discomfort on the face and there are no recommendations other than to wear the masks as an alternative 😓 I might have to opt for making something hideous like a flannel velcro tube or something at some point... I’ve already mentioned this, but just to reiterate: my biggest worry is that with my continual steroid use, which already causes thinning and sensitive skin over time, this might be the beginnings of a permanent skin deterioration condition from the tube pressing on my face 😰 ===================================== #pulmonaryhypertension #pulmonaryarterialhypertension #ild #oxygen #mctd #scleroderma #systemicsclerosis #telangectasias #unhappylungs #coldandflu #flubug #oxygencannula #oxygenproblems #oxygenmask #professionalpatientproblems #mylungssuckatbeinglungs #preventativemeasures
Taas se aika vuodesta kun kämppä täyttyy ilmankostuttimista, saa suojata silmiä ja nauttia viskibassosta. Oireista huolimatta päätät olla badass independent woman ja jaksaa silti lukee tentteihin. Talvi: viehättävyyteni kulta-aikaa. (Tää on myös täydellinen kuva seuranhakuilmotukseen) #mctd #abouttodropthehottestmixtape
Chronic illness confessions 🗣 thank you @iamcaro____ 💛! • 📷: @jacobingle #chronicloveclub
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