#neuromusculardisease

[boxeoconlipstick]

#Repost | @wildalysfigueras • • #25RazonesCool Hoy me uno a la Celebración de los 25 años de la Asociación de la Distrofia Muscular @mdapr • • ¿Quieres ser parte de la celebración? 🥳 Accede a www.prmda.org y mira las formas en las que puedes AYUDAR! • • ¡Porque siempre hay una razón para ser COOL! • • • • • • • #MDA #DistrofiaMuscular #BCool #MDAPR #neuromusculardisease https://www.instagram.com/p/B27PSjmnu_l/?igshid=1o0vf66gnged8

[unutterableme-blog]

(1) I am a snowflake - not because I'm special or unique but because I have Myasthenia gravis. Connection? It's also called as the Snowflake Disease. Photo by: Julia Freeman-Woolpert #MG #MyastheniaGravis #ihaveheardofmg #chronicillness #autoimmunedisease #invisibledisability #invisiblepain #snowflake #muscledisease #muscledisorder #neuromusculardisease #neuromusculardisorder #raredisease #raredisorder #muscleweakeningdisease #muscleweakness

[eyeologyinc-blog]

Regrann from @recoveryproject - The Recovery Project is one of the only outpatient rehabilitation facilities that specialize in rehabilitation for individuals with neuromuscular disease. #hopestartshere #neuromusculardisease #neuromusculardiseaserehabilitation #neurorehab #physicaltherapy #PTTransforms #pteducation #pt #ot #st #GetPT1st #therapy #treatment  #physicaltherapytreatment https://www.instagram.com/p/BnDnw3mAcXg/?utm_source=ig_tumblr_share&igshid=1hxohnsup6waw

[mitomarie]

What are your diagnoses? #metabolicdisorder #mitochondrialdisease #neuromusculardisease #dysautonomia #orthostatichypotension #tachycardia #neuritis #neuralgia #radiculitis #GERD #gastricdysmotility #3MGA #cardiomyopathy #edema #chronicfatigue #myopathy #zebrastrong #zebralife #chronicillness #raredisease #iamrare

[myelomacancermomblog]

𝙄𝙩’𝙨 𝙢𝙮 𝙗𝙞𝙧𝙩𝙝𝙙𝙖𝙮! And guess what I get to do? That’s right... Cancer treatment 🙌

Listen, I don’t mind so much, I mean besides some side effects it really has given me a lot of my life back

❤️❤️❤️

And along with increasing age, also comes increasing wisdom... So here’s a few things I’ve learned along the way...

*Life can often feel unfair

*We can’t avoid hard things

*Don’t sweat the small stuff... Or the big stuff

*We can ALWAYS do better

*People are just trying their best

*Don’t EVER give up

*Tomorrow could be better

*Be nice to everyone

*Get a cat 🐈 They’re the best 😉

𝘼𝙣𝙙 𝙈𝙊𝙎𝙏 𝙞𝙢𝙥𝙤𝙧𝙩𝙖𝙣𝙩𝙡𝙮...

*𝙎𝙀𝙀𝙆 𝙤𝙪𝙩 𝙂𝙤𝙙 and your life will be better!

I truly do love y’all and feel so blessed right now! You have made my life SO much better!

#multiplemyeloma #neuromusculardisease #paraneoplasticsyndrome

#happybirthdaytome

[infpbeauty-blog]

🙏✌ #infpbeauty #nrenee #NR #writersofinstagram #textgram #infp #mindfulness #mindfulliving #selftalk #mindfulselftalk #meditation #selfacceptance #selfloveisthebestlove #selflove #selfknowledge #knowledgeofself #notfromhere #notthisbody #idealists #idealistsrise #autoimmuneawareness #neuromuscular #neuromusculardisease #warrior #bepresent #letitgo #indigos #introverts

[sanitaetshausweinmann]

Sehr schönes Bild von einer glücklichen Kundin. @uhcgmbh @heiko_stimpfig @sanitatshausweinmanngmbh Carbonrollator ⁣ .⁣ .⁣ .⁣ .⁣ .⁣ #hmsn #cmt #carbonrollator #rollstuhl #wheelchairlife #lebenmiteinerkrankheit #disability #raredisease #neuromusculardisease #onmyway #nevergiveup #lookingforward #raw #ig #allgäuliebe #heart #raw #daslebenistschön #keepthemoment #travelingthroughtheworld #seigutzudir #aufgebenistkeineoption #inclusion #babewithamobilityaid #chronicdisease #chronicallyliving #chronischkrank #naturefriends #outdoorphotography (hier: UHC GmbH) https://www.instagram.com/p/CHE3IphpVXZ/?igshid=1sbocbe3c2fno

[mitomarie]

Doctors need to remember that although they see horses every day, there are occasions when they will come across a zebra. Doctors need to be willing to learn and be receptive to new ideas and treatments if they are unfamiliar with the disease. #zebra #3-methylglutaconic-aciduria #inbornerrorsofmetabolism #organicacidemia #mitochondrialdisease #metabolicdisorder #neuromusculardisease

[myelomacancermomblog]

"𝒀𝒐𝒖 𝒂𝒓𝒆 𝒔𝒕𝒓𝒐𝒏𝒈𝒆𝒓 𝒕𝒉𝒆𝒏 𝒚𝒐𝒖 𝒕𝒉𝒊𝒏𝒌 𝒚𝒐𝒖 𝒂𝒓𝒆"

I’ve been working really hard these past few months for this baby muscle of mine... Even with shingles and all (which I don’t recommend btw) 😣

It’s now another treatment day which also brings that dreaded steroid day... dexmethasone, or in the myeloma world “dex days” 😳

✅ 𝐦𝐨𝐨𝐝 𝐬𝐰𝐢𝐧𝐠𝐬

✅ 𝐰𝐚𝐭𝐞𝐫 𝐫𝐞𝐭𝐞𝐧𝐭𝐢𝐨𝐧

✅ 𝐢𝐧𝐜𝐫𝐞𝐚𝐬𝐞𝐝 𝐚𝐩𝐩𝐞𝐭𝐢𝐭𝐞

✅ 𝐰𝐞𝐢𝐠𝐡𝐭 𝐠𝐚𝐢𝐧

✅ 𝐬𝐩𝐢𝐤𝐞𝐝 𝐠𝐥𝐮𝐜𝐨𝐬𝐞

✅ 𝐬𝐥𝐞𝐞𝐩𝐥𝐞𝐬𝐬 𝐧𝐢𝐠𝐡𝐭𝐬

✅ 𝐬𝐰𝐞𝐚𝐭... 𝐬𝐰𝐞𝐚𝐭 ... 𝐚𝐧𝐝 𝐦𝐨𝐫𝐞 𝐬𝐰𝐞𝐚𝐭 😓

But also....

✅ 𝐡𝐮𝐠𝐞 𝐚𝐦𝐨𝐮𝐧𝐭𝐬 𝐨𝐟 𝐞𝐧𝐞𝐫𝐠𝐲

✅ 𝐨𝐩𝐭𝐢𝐦𝐚𝐥 𝐭𝐢𝐦𝐞 𝐭𝐨 𝐦𝐚𝐱𝐢𝐦𝐢𝐳𝐞 𝐲𝐨𝐮𝐫 𝐰𝐨𝐫𝐤𝐨𝐮𝐭! 💪

It’s official, 9 months of treatment ... done ✅

And I probably only have like a lot more to go 🤨

#myelomamotived #multiplemyeloma #neuromusculardisease #paraneoplasticsyndrome #fitness #myelomafitness #macrocounting #cancerfitness #nevergiveup

Thank you to the best OT/PT outpatient therapy team in Dallas! www.thereXtherapycenter.com

[myelomacancermomblog]

Praying For A Miracle

I’ve been at the hospital so much lately I really feel like I should be getting paid 🙄.... but I’m not... it’s definitely the other way around! UT Southwestern has officially become my second home, especially during these past couple of months. An MRI here a CT there oh and surgery, the ultrasounds, biopsies and not to mention the constant need for my blood! Every specialist has become a friend every moment a little less dreadful. It all comes with the territory of living with cancer and now a mysterious disease which has apparently chosen my body to wage it’s unrelenting fury.

Multiple Myeloma has all but been forced into the the background somehow, as everyone is more concerned with my muscle which seems to be mysteriously shrinking and dying. How could this possibly happen to someone like me? Who’s life has always revolved around health and fitness it often feels more surreal then cancer. But then on the other hand, I feel deeply this has everything to do with my own refiners fire. My own ability to deepen relationships and to empathize and love others unconditionally. To hopefully shape and mold the future with a little more authenticity. It’s all I’ve really ever wanted in this life.

I’ve always worked with patients whose bodies were ravaged by disease or changed due to sudden trauma. I remember thinking to myself how much I love my job and how I really love helping people but also thinking... I hope this would never be me. There’s not a day that goes by that I don’t think of each person that I ever had the privilege to work with and witness the battles that were fought, often so courageously. I’m grateful for the examples that they set forth in preparing me for my own life’s challenges.

As I wait for a discovery with multiple specialists on the case, I have to endure, pray and continue on in faith. Since I don’t know what my future holds yet I’ve become more focused on creating amazing memories and am much more determined to live my best life although very limited in capacity and physical capability. Rest assured I have not given up on my dreams but I have also humbly accepted my Heavenly Fathers will that this is my burden to carry for now.

The great thing about all of this is my capacity to recognize the over abundance of miracles daily... maybe it’s because when you’re completely broken the ordinary suddenly becomes extraordinary. I’ll never question the plan that God has for me... I see his hand and feel him and my Savior so close who constantly carry and reassure me every day ... and night. I’m so grateful for every moment I have which is so much sweeter and each experience that has become a valuable teacher for change within me. I know this can be anyone’s perspective no matter the pain of personal hardship or soul stretching experiences. Nothing more can bring you closer to God. It is truly one of the greatest blessings from up above.

“He wants to change our hearts and enhance our future”.

-Jeffrey R Holland-

#prayingforamiracle #utsouthwestern #neurology #cardiology #pulmonology #neuromuscularpulmonology #oncology #surgery #pathology #radiology #godwillfigurethisout #godsgotthis #multiplemyeloma #neuromusculardisease #takingitonedayatatime #justpray #nevergiveup

Finally getting some breath assist as my respiratory muscles have been impacted by my recent onset of muscle weakness ... In the therapy world we’d call this “the dinosaur” of breathing machines!

My leg muscle has also been affected and yes I still exercise. I’ve now reached 20 mins (with rest breaks😉) on my awesome peddler. This has been a huge improvement in one month! #noexcuses #wheretheresawilltheresaway