#autoimmunefighter

[nb-thingz]

I’m curious. How many of you have heard of P.A.N.S and/or P.A.N.D.A.S?

[santapoppea]

invisible illness

Come Lady Gaga e Kim Kardashian. Ho una malattia cronica, di quelle infide autoimmuni che a periodi stanno silenti e poi si riacutizzano all’improvviso e nessuno sa bene che cazzo fare di preciso. Di quelle che, quando stai veramente male, vivi perennemente sotto un tir per il dolore e la stanchezza.

Inoltre, per aggiungere danno alla beffa, è una di quelle malattie invisibili dall’esterno per cui normalmente la gente pensa, quando va bene, che tu stia esagerando, quando va male, che tu te la stia inventando.

Solo che io non sono Lady Gaga e quindi l’empatia sta a zero ed è tutto molto meno fashion. Però (dato che bisogna sempre guardare il lato positivo) non sono neanche Kim Kardashian, e per fortuna, altrimenti altro che empatia, oltre alla malattia sberloni a gogo!

Da giugno dell’anno scorso fino a fine febbraio di quest’anno è andata male assai e, nonostante antifiammatori prima e bombe di cortisone poi (con tutti gli effetti collaterali del caso, fra cui dolori muscolari allucinanti), non ne sono uscita. Da novembre a marzo poi sono stata così male da dover vivere da reclusa in casa mia.

Alla fine lo specialista ha deciso che era ora di  (testuali parole) “passare alle armi pesanti”  e cominciare una terapia a base di infusioni di immunosoppressori da effettuare periodicamente in ospedale. Questa terapia, che mi ha fatto stare bene nel giro di un mese ed eliminare completamente il dannato cortisone nel giro di due, ha però il piccolo effetto collaterale di abbassare le difese immunitarie rendendo più facili complicanze quali (esempio mica tanto a caso) la polmonite in caso di infezione alle vie respiratorie.

Questo mi diceva il medico mentre, a metà marzo, mi raccomandava caldamente di rimanermene chiusa in casa perchè (di nuovo testuali parole) “data la sua immunosoppressione sono altamente probabili le complicanze polmonari del COVID-19”.

Conclusione: sono murata viva fra quattro mura da novembre 2019.

Ma non compatitemi amici, io resto positiva.

Addì 12/06/2020

[thedogrosebush]

warmth, pencil and watercolor, 2019

[piasservicedogfund]

[ihatecoconut]

Honestly chronic pain sucks & it sucks even more that I have to stay more on top of homework etc than everyone else because I can't predict when I'm gonna have a flare

[mybpdnightmare]

It's the macro things. @kidmachinate went so many places today just to find me things to help me stay healthy.

[kateebear702]

[lady-of-troy]

Dealing with Dramedies

Hi guys!

My best friend has launched her preorder campaign for her memoir, about how she deals with her chronic illness, a rare autoimmune disorder while maintaining a positive and humorous outlook.

It would mean a lot  if you read her book and spread the word!

This is her campaign’s video: 

https://youtu.be/eK5pQBAbv-w

and please support her and preorder here!

https://www.indiegogo.com/projects/dealing-with-dramedies-by-elianor-m-a

If you can’t afford preordering please share this!! thank you <3 

[hyperbolicawesomenessinyourface]

[mommingwithlupus]

7 Reasons to Exercise at Home

I used to go to the gym and honestly I love the gym atmosphere, but nowadays it's not for me with my schedule and family life. I used to go with a friend and sometimes alone before I had my second child. My son was old enough to leave him home and the gym membership was only $25 per month. Not too bad and I had time after work to join in on classes and even extra cash to pay for a personal training group for another $120 per month. Well, once I had my second baby I no longer had all these luxuries. Not only did I now have to pay for the new cost of daycare and diapers, I also couldn't find the time to get to the gym. The few times I tried, the Kids Club would call me to come get my crying breastfed baby so I could nurse her. My workout would get interrupted because she was so attached to mom and I couldn't be gone for 20 mins without her having a meltdown. I decided to try a new routine and exercise at home. I'm so glad I did! Now that I have 3 kids, I can't see myself doing anything else. Exercising at home makes life so much easier for me and there are so many apps and streaming methods that can be used these days that anything I need is available somewhere.

Here are the reasons working out at home is the best option for me as a mommy of 3 and a lupus warrior:

Available Any Time- Whether you are an early riser and want to exercise before the kids wake up or you wait until the afternoon or evening to fit in your workout, your home is always there and so is whatever streaming method or app you like to use. I have tried so many times to wake up early, but I just can't seem to stay consistent with it so I exercise during my lunch break and/or as soon as I get off work.

Pause Button- Exercising with the kids around can be tough sometimes. One is calling for you to wipe her butt from the bathroom, the other is crying because she dropped a toy, and another is asking if he can go to his friends house. They all see your obviously busy, but kids will be kids. For the things that can't wait like diaper changes and toddler booboos, there is the magic pause button. Push pause, take a few minutes to do what you need to do, and come back. The workout won't go on without you and you won't miss a thing.

Judgement Free Zone- Going to the gym or taking a group class can be hectic and you may feel uncomfortable around others that may be more physically fit or advanced in the class. At home there is no judgement. You can go at your own pace and don't have to feel anxious about trying to keep up with others. As long as you stick with it you will get better and stronger every time! Don't feel discouraged if the trainer on the video does 25 reps and you only did 15. They can't see you and are just there to motivate you and keep you going. Write down your reps and push for more next time. Watch your progress and eventually you will be up there with the rest of them.

Several Options- There are so many apps and streaming options available. I love this because I can plan my workout based on my day and how I'm feeling physically. If I know I won't have time for a long workout because my son has a football game or we have dinner plans with friends, I can choose a workout that I can fit in during my lunch break or quickly after work. Or if I'm feeling drained and low energy I may want to do yoga or another light workout. Is the weather nice out and you don't want to stay indoors, there are plenty of apps for timing your run or incorporating some outdoor strength training. Here are some of the programs and apps that I recommend:

BeachBody On Demand- This is my personal favorite! There are so many choices. They offer high intensity workouts, strength training, pre and post-natal, dance, yoga, and more. If you don't like one, try another. Plus they also have nutrition guides and discounts on their Shakeology products.

5K Runner- This is similar to a couch to 5k app. If you have a goal to build your endurance, but haven't ran in who know how long this is a great app to help you get started. When I started using 5k Runner that first week of only running one minute at a time was brutal, but now it's a piece of cake. The app tracks your distance, maps your track, counts calories burned, and gives you little motivational shout outs during the run (you can turn that off if you're not into that).

You Tube- There are so many videos out there that can be streamed from the comfort of your home and You Tube is a free way to get access to fitness videos. Just search what you feel like doing that day and there's a video for it. I recommend looking into credentials of whoever the video is from though. You don't want to take fitness advice and workouts from someone that doesn't have the experience and knowledge that they should and could potentially cause your body more harm than good.

Map My Run- I'm a runner and love to join fun runs and 5k races when I can. This app helps me to track my time and maps the area I running in case I want to save the track for another run or share with my friends. The app will tell you when you have hit a mile and tell you your time and pace during the run making it easy to set goals and know how you should do next time. I love the motivation from seeing my other friends using the app and we cheer each other on when posting our run stats for the day.

Saves Money- Exercising at home means you don't have to spend the money on a gym membership, personal trainer, or the added childcare cost. Most apps and streaming methods are free. BeachBodyOnDemand is either $100 for a whole year or $10 per month. Much cheaper than a gym membership. Equipment is not always required and if there is a workout that you want to do that requires equipment, you usually have the option to purchase either from the video provider or anywhere they are sold. There are plenty of workouts that do not need any equipment and you still get amazing results.

Time Saver- The commute to the gym or class alone could be a reason you don't make it to the gym. You worked all day, then drive to the gym, change, exercise for 30 mins maybe an hour, change again, drive home and then do whatever else your night has in store. That's only if you don't also have to pick up the kids, drop them off at the kids center, and pick them up again. Exercising at home could cut off up to an hour of this time. You simply get home from work, get changed and pop on your video or app. When you are done, you're done. Already at home, can jump in the shower or get dinner started right away. You can do whatever you want with that extra time. My 4 year old is usually in daycare (before the quarantine-now shes home every day) until 6:30. I get off work at 4:30, can start exercising by 5:00, work out for 30 mins-1 hour depending on how I'm feeling, and then go pick her up or start dinner while my husband picks her up. I don't have the stress of running around. When I went to the gym, class didn't start until 5:30 so I had to rush from work to daycare, take her with me to the gym, then rush home after so we don't eat dinner at 10 pm.

Example to your loved ones- You are exercising at home. Your children see you, your spouse sees you, your friends may see you, the neighbors, anyone in the area close to you. Just doing this alone is motivation for them to live a fit life. My teenage son refuses to exercise with me, but he has started exercising at home on his own and has been motivated to be healthier. My 4 year old daughter will join in on workouts she noticing me doing that look fun like dancing and yoga. I tell her I'm exercising to be strong and healthy and now she goes around always talking about how she is strong and healthy because she exercised with mommy. It's a lifelong impression for the betterment of your children. They develop a healthy habit that will last with them in their future and go on to your grandchildren and theirs. Even if they don't want to jump in with you, you are still inspiring them to live a healthy and fit lifestyle just by them seeing you doing so and the benefits it has for you.

As a mom of 3 and also battling with lupus, exercising at home has been the very best thing for me. My schedule is managed better, it helps as a stress reliever, saves me time and money, and I can take better care of myself and my family. I feel great and have more energy. On days when I feel drained and fatigue is taking over, I can take a day of rest and my workout will still be there tomorrow waiting for me to press play. I won't miss a class and fall behind and I'm never running late. I stay motivated because my family sees my progress and how much it helps me and I cannot let them or myself down. I work on myself so I can be a better example and a better mom overall for my family. You can make your schedule any way that you would like. Start slow and build yourself up to where you want to be! It's all in the palm of your hands and in the comfort of your own home. You're already there, just jump up and get started!

[artisticbent]

Roughly six months ago I began losing my ability to stand and walk due to an autoimmune disorder wrecking my body. I became bed ridden, dependent on prescription narcotics for pain relief and required multiple spinal procedures but still had no quality of life. Two months ago my dr recommended CBD and hemp products instead of prescription narcotics. Thanks to those my pain is gone and I’m actually living. I celebrated 10 straight days of not needing a cane or walker by hiking through nature trails and the Adriatica Village. I promised myself if I could ever walk normally again I wouldn’t take it for granted and I’d get outside instead of binging TV - today I honored that promise #autoimmunedisease #autoimmunewarrior #autoimmuneawareness #spinalhealth #walk #walking #health #fitness #hiking #mckinney #mckinneytx #november #2019 #irishgirl #irishgirlsrock #autoimmunefighter #autoimmunedisorder #autoimmunelife #lifewithautoimmunedisease https://www.instagram.com/p/B4bdhDfgmss/?igshid=3ps17d85pbad

[gardensofwhimsy]

To everyone suffering from chronic illness right now, you are not alone 💕

I can see you’re trying, I can see that it hurts

Just take a breath, love

Fill your lungs up

Rest your head, there's no sense in losing sleep

You can break down

Let your worst out

Lose your temper, but you're not losing me

Like a bed that you could fall in when you're broken

I'm the air that's running through our window open

Take a breath, love

Fill your lungs up

Rest your head, 'cause you're not losing me

This is glorious.

[thedogrosebush]

first dose, pencil and watercolor, 2019

[piasservicedogfund]

Thank you 🙏 💕 we are 10.00 away from 1,000.00 now! So much love and appreciation. Bless you all 💕

[coffeewithmom]

Today was treatment 3 of 6 and it was soooo welcome. I have had daily intense flares this past week and was in dire need of some relief. Having #interstitialcystitis was something I never considered when my doctor sat me down a decade ago and told me my journey for normalcy would be an uphill battle. I explain my diseases to people and the reaction is always ," I don't know how you do it!" But the truth is I wake up everyday and tell myself," YOU WILL NOT BE A STATISTIC! " As a young black woman in this country I fight stereotypes and statistics stacked against me everyday and I REFUSE to let my health reduce me to just another number! 63% of people with this condition can't work full time due to symptoms. 63%!!!!! Every time I show up for work, get on a flight, body 12hr shifts day after day , I am BEATING that number back! I don't always have good days. I am not always optimistic. I can't move some days, my other autoimmune diseases flare without warning, any type of stress sets my body aflame, and I stomach over 80 pills a week just to make it. But none of those things will ever stop me! None of those things will ever steal my drive and determination to #Liveintentionally ! September is #INTERSTITIALCYSTITISAWARENESS month! Someone you know may be suffering so I hope this posts and the ones to come can open a dialogue about this disease and let others out there know they are not alone! I am with you. I pray for you. I FIGHT WITH YOU! Life is whatever you make it so #BEBOLD! #interstitialcystitiswarrior #interstitialcystitisaltmed #wellnessblogger #autoimmunewellness #autoimmuneawareness #autoimmunediseases #autoimmunewarrior #autoimmunefighter #keepshowingup #autoimmuneproblems#butyoudontlooksick #invisibleillness #chronicpain #chronicillnesswarrior #findingyourfearless #liveyourpurpose #femaleblogger #clevelandblogger #browngirlswhoblog #blackgirlswhoblog #womenwhoblog #blackwomenwhoblog (at Cleveland, Ohio) https://www.instagram.com/p/B2ATw1mB-Fr/?igshid=1baz6hag5sfvo

[v8311667]

In dying. Spitting some serious historic fact. @holla_back_holli we were just talking about this!#Repost @endsickness • • • • • Ever had someone make fun of you because you were eating "SO HEALTHY"? 🤔I sure have! Little do they know, processed food is less than 80 years old and was initially intended for soldiers, not daily life. ⁣⠀ ⁣⠀ Introduced in 1941, M&M candies were one of the first processed foods ever created, and were designed for solders🧐. Shortly after, General Foods created Maxwell House Instant Coffee, a product that was also supplied to soldiers and then ultimately introduced to the public in 1945. Once competition saw money was being made from these products, the processed food industry EXPLODED! ⁣⠀ ⁣⠀ Once the industry started booming, the goal of these companies was simple. Advertise HEAVILY through all media outlets and convince America this “new way of eating” is NOW NORMAL. 😉 Unfortunately, the public fell for it due to convenience. As a result, here we sit today, with higher rates of chronic illness than any other time in recorded history. ⁣⠀ ⁣⠀ Hopefully, the next time someone laughs at you for "EATING SO HEALTHY", you won't feel so odd🙄. Trust me, in the end, you'll be the one with the last laugh😁...⁣⠀ --⁣⠀ ⁣⠀ Follow @endsickness for posts on nutrition, healing, wellness and holistic medicine🙏. Thanks for reading! ⁣⠀ ⁣⠀ #holisticnutrition #plantbasedpower #holistichealing #autoimmunedisease #autoimmunefighter #crohnsfighter #nojunkfood #fibromyalgia #fibrofighter #fibromyalgiaawareness #autoimmunewarrior #crohnswarrior #ibsawareness #ibdawareness #mastcellactivationsyndrome #histamineintolerance #holistichealer #holisticmedicine #foodaddiction #autoimmunediet #candida #leakygut #wellnesscoaches #healyourgut #nutritionistapproved #lupusfighter #lupuswarrior #wellnessjourney #autoimmuneprotocol#cleaneating #freshisbest #paleo #cutting #trimdown2019 #essentialoils #yogi #yoga #yogaahhwithvanessa #yogateacher #yogaintheville #nicevilleyoga #850yogastrong #850yoga #savageunicornyoga🦄🌌🕉 (at Niceville, Florida) https://www.instagram.com/p/Bw3IIABl3AC/?utm_source=ig_tumblr_share&igshid=1z6zasfo64om