#myastheniagravis

[originalmemorieshere]

Just Checking In

This has been the craziest past year and a half. I think I last wrote when my husband was diagnosed with myasthenia gravis. That in itself has been life changing for us as a family, and I know it has redefined our roles and responsibilities. The hardest working man I have ever met still struggles to do the most he can every day. Some are productive and others are rest days, which are just as, or maybe more important, and definitely productive in a different sense. 

We have had to learn that Rome really wasn’t built in a day. The original timeframe on our remodeling project (our home) had to take a back seat to what could get done on a specific day. We hired help and it was a mixed bag. What really mattered through it all was that we were making our home the way we wanted it and were able to do most of it before the money and my husband’s capabilities ran out. Seeing him physically change hasn’t been as hard as seeing him emotionally change. It has been a lesson in defining and understanding what one is capable of on any given day. It has also been humbling for him to realize that although he is Superman in my eyes, there are days that Clark Kent is the only one here. I will take that. 

I know that God will not give us more than He knows we can handle, and I know it has never been said that it would be easy. Anything worth having is worth the effort. I also know that God didn’t put me and my husband together for us to have a short connection. Therefore, we continue to pray that he will continue to receive infusions that bring him back to a semblance of his old self for a few weeks or month at a time. 

Some days I wonder why this happened to him for this to appear at this stage in life, and on other days I don’t even think about it because there is nothing we can do but pray and have faith. We’ve read that some people live with MG for years and manage it quite well. We also know that he is just one crisis away from something potentially life threatening. 

Yes, his attitude shifts from time to time, but doesn’t everyone’s? There are days that I have mood swings on the hour and I have no albatross hung around my neck that I cannot shake. He didn’t choose his burden, but I am proud to stand by his side and be there with him every step of the way. 

[vkei-purin]

being disabled is like playing on a hardcore game mode but with score multiplier from easy mode

[goldmedalphysiotherapy]

Treating Various Conditions at Gold Medal Physiotherapy

Discover effective treatments for dyspnea, congenital talipes equinovarus (CTEV), and myasthenia gravis at Gold Medal Physiotherapy. From addressing the causes to managing symptoms, our team of experienced physiotherapists offers personalized care to improve your quality of life. Whether you're seeking relief from breathing difficulties, managing CTEV in yourself or your child, or navigating the challenges of myasthenia gravis, we're here to help you regain strength, mobility, and overall well-being. #Physiotherapy #DyspneaTreatment #CTEV #MyastheniaGravis #TreatmentOptions #Healthcare

[susan87505]

Smiling Sloth; Acrylic Portrait of Furry Animal, Father's Day Gift of Love, Artwork, LGBTQ Pride Month, Printable Digital Download File by ColorBySusan on Etsy https://www.etsy.com/listing/1484385426/smiling-sloth-acrylic-portrait-of-furry The sloth is the mascot of Myasthenia Gravis because they represent the slowness of our movements. ❤️ #MyastheniaGravis Awareness Month #autoimmunedisease

[jeriaiello]

These two (Nurse Frank & Dr. Marie) have stayed with me next to the recliner since Friday’s infusion—comfort & love. I have a couple days of side effects from IVIG before the benefits begin & our pack will be romping around again. #dogsofinstagram #myastheniagravis #ivig #treatment https://www.instagram.com/p/Co28NMPOqgT/?igshid=NGJjMDIxMWI=

[psychyperstudent]

Invisible Physical Disabilities

Hi guys. I'm currently completing my undergraduate psychology research project and I'm focusing on the lived experiences and resilience in people with invisible physical disabilities (due to my experiences of being recently diagnosed with hypermobility, and because there isn't a lot of research into general invisible physical disabilities at all). I was wondering if any of you were interested, or know anyone who might be interested, and lives in the UK to complete an online interview? If your interested could you please message me. Thank you for your time, hope you all are having a good day!!

[dylanxvx]

@adorkableamy shared this really fun #hauntedgardenartchallenge from @grace.moth with me so I’m going to post some things between working on other *top secret* projects and talking a little about #myastheniagravis this month. I created this piece for my friends in @yourbaroness a while back! https://www.instagram.com/p/CPmwp-FL1O5/?utm_medium=tumblr

[nezumiko]

I painted my little heart-shaped cactus for the Myasthenia Gravis Art Auction! https://app.galabid.com/artformyasthenia/items #myastheniagravis #mgstrong #mgawareness #myartwork https://www.instagram.com/p/CPbPzyyFkhu/?utm_medium=tumblr

[vaishhh07]

DAY 11

Yesterday night was bit tough one for me. I had extreme left arm weakness and mild breathlessness and severe diplopia. I applied eye drops prescribed to me for my eye infection as well as i had my medicines and steroid too. I managed to sleep yesterday night. I thought next morning i won't be able to wake up for my daily excersice. I woke up in the morning still had weakness in my left arm. It was a happy morning there was no breathlessness. I went cycling today but again no availability of cycles. Better luck next time. Me and my friend had a great time playing badminton. Being a sports lover and a player i love playing badminton. We played for 30 mins because it is hard for me to pull more than that. After that we sat there silently listening to chirping of birds looking at other people who were enthusiastically performing pranayam and excercises. We also did pranayam and meditated for 10 mins. I experienced a lot of peace and strength which boosted my energy level.

Hoping to find a cycle tomorrow!

Have a nice day :)

[ferretly]

**

[vkei-purin]

i hate being disabled.

i hate slowly loosing ability to do my usual activities. i hate being less and less productive each day. i hate the pain from fatigue. i hate painful muscle contraction. i hate how everone needs to adjust to my limitations.

and i really hate how people tell me i should learn to love my disability

[anitadhyana]

Aku baru saja selesai menonton film China yang judulnya First Time. Film melo, ttg seorang perempuan yg mengidap penyakit myasthenia gravis.

Disitu pikiranku langsung berputar ke waktu 12 tahun yang lalu. Di sekolah dasar kelas 6, datang seorang siswa pindahan di kelasku. Awalnya dia tampak biasa saja. Tapi keanehan mulai jelas. Dia tidak pernah mengikuti pelajaran olah raga, jarang ikut bermain bola dengan kawan²nya (meski sesekali menjadi penjaga gawang tapi itu tidak lama), tidak pernah terlihat berkeringat dan selalu diantar jemput oleh ayahnya.

Sampai di beberapa hari menjelang kelulusan, rumor pun terdengar bahwa dia tidak bisa banyak berkeringat/kelelahan/kecapekan. Tidak ada informasi lebih, hanya itu. Benar atau tidak aku tidak tahu.

Berlanjut di tingkat SMP, dia masuk ke sekolah yang sama denganku. Dan kebetulan, kelasnya memiliki jadwal olahraga yang bersamaan dengan kelasku. Masih sama. Dia tidak banyak melakukan kegiatan selain pemanasan. Sampai di kelas 8, aku mendengar kabar dia pindah sekolah dan tempat tinggalnya. Di waktu terakhir, aku dengar dia dan keluarganya pindah ke Jakarta. Tapi entahlah.

Doaku, semoga dia tetap sehat dimanapun dia berada dan menang atas penyakitnya. Beberapa waktu setelah dia pergi dari kotaku, sahabatnya banyak bercerita padaku tentang dia. Mulai dari penyakitnya sampai perempuan yang dia taksir.

Terima kasih karena telah memilihku untuk menjadi perempuan yang kamu sukai. Aku harap suatu saat kita bisa bertemu dan punya waktu bercerita lebih banyak. Aku akan terus mendoakan kesembuhan dan kesehatanmu. Semoga tersampaikan.

Nitt,

[a-floral-daydream]

For anyone wanting to know more about me...I have Myasthenia Gravis.

[drawittoknowitmedical]

[ayyyflueg]

Quick question

Any of my followers ever been through a seriously life-altering situation? Any of you all ever do it as a spoonie? How about all of the above, but on your own?

This post is meant to serve as an acknowledgement and appreciation for the spoonies that have no choice other than saving the ship from sinking. Dealing with criticism and skepticism. Being your own fucking rock to lean on. This is even for the spoonies that aren't going through these specific times but are for SURE going through tough times. I see you. I hear you. I'm here with you. Please don't let anyone's negativity cloud your own thoughts. You got this.

[oldest-daughter-always-ignored]

I don't know why I even bother. No matter what, nothing is ever good enough. If I say I don't want to do anything or go anywhere on a Saturday then I'm a bitch and being crabby when in reality I know if I leave the house I'll spend money I don't have on shit I don't need. And I'm just fucking tired from working all week and just want to recover. But of course, if I start telling people I've been diagnosed with MG, then they'll act all sympathetic at first, then turn it around and say, " You never feel good" or "Why didn't you say something earlier about being sick?" Never mind that I've been dealing with the symptoms and have been trying to get answers for 5+ years. They'll always find some way to make it my fault.

I got sick with Norovirus at the beginning of February and ended up missing a LOT of work that month from the virus to getting pink eye to ending up with walking pneumonia, so I've been very financially stressed.

Then I decided to go to a wrestling show in Des Moines at the beginning of May, and my mom had to invite herself along (just to sit at the hotel by herself) because God forbid I be able to drive 4 hours and meet my friends on my own.

I was supposed to go see an old movie at the old theater downtown with a family member, but (thankfully) before I could get tickets, they decided to ditch me. We could have gone a different day, but nope, I'm not worthy enough to spend any time with.

Is it too much to ask that someone in my fucking family would make me a priority just once? My own brother won't even have a conversation with me about why I wasn't allowed to be a God parent to my niece but BOTH my sister-in-law's siblings could be along with my brother's drunk friend.

I just want to be happy and wanted and included. But that's too much to ask for.