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Hi, my name is HibernatingCoua297. I'm here because
allopathic medicine doesn’t help, I’ve tried everything but the symptoms get worse#MightyTogether #PeripheralNeuropathy
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Peripheral Neuropathy
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I'm new here!
Hi, my name is Sentence_4_life.
I'm worried about where to go from here. I have been dealing with these issues for a very long time. I feel like the doctors are tired of finding more and more autoimmune issues. I am tired of hearing it and having to deal with the effects. The medical issues I have, hold me back. But the medications are worse. I want to move and live my remainder of my life somewhere I would like to be. Because the regulations of the medications, it is the real issue of me not being able to move somewhere more affordable. The government has stepped in, and the doctors are no longer taking the proper care for you and your stuck if you are put on opioids early on and moving to another state isn't as easy as it sounds. Finding another set of doctors like I have now. Is extremely difficult, regardless of all your images, records, reports, medical documentation. They want you to start all over again and not prescribe the same meds. I am 62 years old. I just want to move where I wish to. Go to a doctor's office get to know the doctor like the old days. Get my medication filled and go back to my life. I have been attempting it for 3 years. I hit brick walls of what another doctor wants and etc. I'm old, tired, and want to relax for my remainder here.
#MightyTogether #Anxiety #Depression #Migraine #ADHD #RheumatoidArthritis #OCD #Fibromyalgia #MultipleSclerosis #Endometriosis #LupusNephritis #Lupus #RaynaudsPhenomenon #CeliacDisease #SjogrensSyndrome #Arthritis #PeripheralNeuropathy
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Living With Dysautonomia
Good morning. I hope this posting finds you all well. I’m not sure why I feel compelled to share my story, but I am here because I have been diagnosed with #Dysautonomia . I have been dealing with all of these symptoms since I was 14 years old. It began with my heart racing uncontrollably, syncopal episodes whirl at school and fatigue. This was controlled with Atenolol. After becoming a mother, I had an episode where I became very dizzy and drove myself to the ER. I had to be assisted out of my car by a rescue team because I could not stand, walk or control my body. I was tested for all the usual suspects, Lupus, MS, etc. Nothing. Several years later, I would be at work talking to someone and suddenly I would get so dizzy I would have to hold on to the seat. I would yell, “please help me. Don’t let me fall!” All the while, I was sitting perfectly straight in my chair though the world looked on tilt. As I grew, the symptoms would come and go. I became a nurse. I took care of both parents until they passed. One month after losing my father, I lost total control of my body. I had no bladder control, no control of my arms or legs, not able to walk straight without holding on, not able to get myself to the bathroom, not able to speak with the same speed or volume. My sister made fun of me. She told me to get over it, to shake it off and get back up. After weeks of having in-home physical, occupational and speech therapy helping me, I was able to return to life. Since then, I have been diagnosed with Rheumatoid Arthritis, Dysautonomia (unknown yet as to which kind) and peripheral neuropathy. Please, don’t think this is a sad post. It is not. I have a wonderful family, a great sense of humor and an astronomical love of life. I have found ways to cope and have learned some tricks to deal with my illness. I hate that it is never over. I hate that it is always there with me. I hate that some days, I make plans but then I wake up and have to save those plans for a different day. I hate that doing normal things like cleaning my house, going to the grocery store, playing with my grand children and running with my dog have become things I must plan my life around because once I finish one of those tasks, my reserves for the day are lost. But I remind myself everyday, God has a plan. He has control. Maybe it’s just His will that I slow down and take care of myself today. I am fighting disability and running from familial diseases (heart disease, diabetes and renal failure) but I feel the breath of these beasts creeping on my neck as I slow more and more every day. I will not give up! I will keep fighting for my new normal life. I will keep pushing through because my children have to see me fight. They have to see that chronic illness cannot stop me from living. They have to see that just because life is hard, we can’t ever just lay down and stay there. Find something to believe in. For me it is my God. My Heavenly Father. If it’s not that for you, though I pray it is, find that higher power that you can love, lean on and be guided by. Trust in Him. He will help you. Maybe it’s all a figment of my imagination, believing in my God. But if it helps me, then so be it. I believe. I must. Because I will not give up. I live in severe pain every day. Some days, I can see, some days, not so much. Some days I can wake up and go Kyacking. Some days I can’t. I will live for the some days. I will share my story and how I cope every day. I will continue to live until I can’t anymore. Wishing you all, a wonderful and blessed day of life! It’s a beautiful life, live it! #Dysautonomia #RheumatoidArthritis #Pain #itsabeautifullife
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I'm new here!
Hi, my name is Crislee189. I'm here because
#MightyTogether #Fibromyalgia #MyalgicEncephalomyelitis #PeripheralNeuropathy #HypothyroidismUnderactiveThyroidDisease #Osteoarthritis #RaynaudsPhenomenon
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Post
Remember when
Remember when doctors were empathetic and pills were abundant?
When did opiate crisis mean that everyone suffers?
#Pain
#Anoxal neuropathy
#relief
#vicodin
#PeripheralNeuropathy
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Whoa I’m On Fire!
Springfield was on fire.
Johnny had a ring,
Billie didn’t start it,
Taylor-
Fire and Rain.
7 times the furnace,
three boys trust His name.
They held on in the burning …
walked out from that flame.
🔥🙏💪🏻🕊️🛟✨
Keep trusting in your fire!
#MitochondrialDisease #sjogrens #IrritableBowelSyndromeIBS #ChronicPain #RareDisease #PeripheralNeuropathy #ComplexPosttraumaticStressDisorder #PosturalOrthostaticTachycardiaSyndrome
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That I Burn by Melanie R.
Lifetime with pain
Pin-pricked in pieces
battled set burning,
it’s raging increases.
It’s chronic,
it’s rare.
Flared Inflammation.
Body that failed…
Complete consummation-
It hindered my soul,
Downtrodden and low.
Withstanding the suffering,
It’s tussling wide loads.
Desperate cold nights
Him calling my name,
preserved me on weary
ignited the flame.
Jesus drew close,
For Him I am sure.
Through all of life sufferings
set me to endure.
The poking, the prodding,
the pain with no cure,
for Him in my body and soul-
I’m made pure.
Heavenly Father,
As you searched and centered my innermost core; my faith ignited your reflection.
Spoken into life to forever burn your kingdom light that kindles throughout my heart.
Resounding faith formed like these words…seen by the ones called, preserved, and understood-
His wisdom given in the Holy flame for present and future time.
That I burn-
When monitored you equipped me in palpable hope through Your sovereignty.
Let it resound its course of your reign!
Carry me through the locked chambers of suffering; for the harder the suffering, the higher your plan.
I yield my body and surrender for I know it is all for Your glory.
Father,
Your eternal word created the fire’s dance when shadows appeared consuming.
You poured your Holy anointing on my answered prayers to keep me burning through the endless nights of chronic pain.
That I burn-
Resuscitated from the smoke and suffocation when darkness lurked to extinguish me.
You received me on Holy ground like Moses and the burning bush.
I thank you for the immeasurable strength to walk upright in this purpose.
That I burn-
My light persevered!
Glory to God!
Sampled, probed, poked, and tested true!
Your name is magnified as my spirit burns in rhythm set to your timing.
In these recent few weeks I am recovering from my 2nd hip surgery (10 weeks post-op),
I have received 2 additional diagnoses.
I’ve had both Leg EMGs, left leg biopsies.
I also had an echocardiogram, heart monitor, pain pump maintenance, bloodwork, etc…
I have relentless burning in physical pain, but also my spirit is burning for the true message of our Lord and savior Jesus Christ!
That I burn-
and to God be the Glory!
Stay strong Mighty Warriors and burn on!
I pray for your strength to endure!
#MitochondrialDisease #sjogrens #PosturalOrthostaticTachycardiaSyndrome
#IrritableBowelSyndromeIBS #HypothyroidismUnderactiveThyroidDisease #HashimotosThyroiditis #ComplexRegionalPainSyndrome #RareDisease #PeripheralNeuropathy #Pain pump patient
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I Wear My Stripes For Rare Disease!
Rare disease indiscriminately strikes, and understanding life’s plan through the complexities can be overwhelmingly challenging; but also an opportunity beyond the suffering.
Although medical technology has advanced and new treatments have been discovered; rare disease often times have no cure, are misunderstood, difficult to diagnose, and be provided effective treatment for.
Many rare diseases involve multiple organ system dysfunction infiltrating the genetic blue print, which wreaks havoc throughout the entire body.
It’s a long, arduous diagnostic journey for not only the rare disease patient, but also for the dedicated medical professionals, friends/family standing by them, and supporting the rare disease sufferer through the great unknown of rare chronic illness.
Thank you for prayers, caring & sharing!
I wear my stripes in support of Rare Disease!
Wear Your Stripes in Support of Rare Disease Day February 29th, 2024!
Thank you Jesus!
…and by His stripes we are healed!
🙏💪🏻✨❤️🩹
God Bless!
#RareDisease #MitochondrialDisease #SjogrensSyndrome #sjogrens #IrritableBowelSyndromeIBS #RheumatoidArthritis #ComplexRegionalPainSyndrome #ChronicIllness #ChronicPain #IdiopathicIntracranialHypertension #PeripheralNeuropathy
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Hi, intro post
I am new here. I am 71, male, in Missouri. Welcome to me. :) I have farmed for about 30 years, and cleaned houses for a living. I have Peripheral Neuropathy causes chronic pain 24/7. I spend most of time managing it. I have terrible flares twice a day, after I have slept. ( nap in the day ). Now I have microscopic colitis. It is a mess sometimes. Other wise I am a happy person.
I tried to commit suicide last year over the pain. I don't know how I have survived until now, but life is still happening. I need others who are dealing with their own situation to share in this very weird, and painful life. Hopefully I will get to talk with several of you as time goes by.
I'm an open book, when I am not closed. :)
Welcome
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Feeling broken? Only seeing your flaws? Sometimes those things we feel are flaws are actually what makes us unique, special and extraordinary!
I can get caught in that awful loop of beating myself up, only seeing my flaws, only recognizing things I haven’t done instead of giving myself credit for things I have done, getting stuck in self judgment, only seeming to hear my inner critic’s voice, I can lose all my self confidence, let my self esteem dip and things can look pretty bleak.
Over time more and more I have been able to catch this in the moment, pause, breathe, re-set, and then be gentle with myself and allow myself to shift my energy. I can then take first steps towards better self care…and reverse that repetitive loop, replace it with self respect and start to believe in myself! One situation at a time, I’m getting better … and every time I succeed it can get a little easier the next time. I can see that I have grown along my path and although it can be very hard for me to accept, there is unique beauty to the journey I have been on. I am not broken - I am strong - I have been accepting my flaws and see that as I have picked myself up over and over I have filled myself with gold!
~~~~~~~~~~~~~~~~~~~~~~~~~~
I find doing a gratitude list can help. A while back it was recommended I process a gratitude list every morning. I like to think of my blessings: roof over my head and food on the table; a car that runs and being able to afford insurance & gas for it; MY HEALTH…here I go through all my 5 senses thankful they all work, touch and feel my legs that didn’t at one point and give thanks that parts of me are healing but by bit ! I give thanks for my whole support network: great doctors & health providers, my friends, and my family!!! I find after doing this I start off the day feeling much better about myself!
What is on your gratitude list?
#MentalHealth #Depression #Anxiety #SocialAnxiety #Disability #ChronicPain #ChronicIllness #Selflove #Selfcare #BipolarDisorder #BipolarDepression #COVID19 #Parkinsonism #Concussion #BrainInjury #Migraine #Headache #BackPain #neckpain #PhysicalTherapy #HIVAIDS #PTSD #Stigma #PeripheralNeuropathy #Addiction #AddictionRecovery #IfYouFeelHopeless #Hope #CheckInWithMe #InsideTheMighty #MightyTogether #DistractMe
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