Pudendal Neuralgia

I have Pudendal neuralgia. This condition requires me to sit as little as possible. I am a “connections “ person- and like to see my friends and go to support groups. It’s so challenging because this condition is very rare. There simply aren’t any local support groups. I have found support on Facebook group. But few women in my local area who have it and want to meet. Feeling very frustrated.

My sister flies in from Perth - 6hr flight - to stay in my sons bnb in Sydney tomorrow. I havent seen her for 5yrs tho we talk several times a week. The next day my son and her drive from Syd-Canberra - another State - 2+ hrs, to surprise and pick up her daughter who is doing an internship there and whom she hasnt seen for a year. They will all travel back to Sydney and my sister and her daughter will go to my daughters place later 90mins away, where my son will stay to babysit - so the others can go out for dinner and see the musical Hamilton - Olivias birthday surprise. Then Sunday my sister and daughter drive back down to Canberra as she has work on Monday and my sister will stay for a week and do her own work online during the day. Today I was feeling sad and wishing I could join in more but its just not possible. I cant stand in one place for long with POTS, tire quickly when walking and cant sit up more than 10mins without pre-syncope - having to recline even during short car trips and lay down when I arrive anywhere to recover. My son says he will bring them both around here but I know my sister will be packing as much into her trip as possible. She also has pudendal neuralgia and will need to rest and all the travelling will undoubtedly cause it to flare up. Most of the time I accept the limitations but its hard at family times when I cant join in with their plans because of my health. It hurts to miss out but I just have to make the most of the time I do get to see them.
#dysfunctional childhood #POTS #major depression #degenerative disc disease #Survivor

#PudendalNeuralgia #Fibromyalgia Wondering why this reunion is so important to me.

A moment in time of respect or acknowledge that we are still here?
Whether or not we choose to share the stories of our lives, our sadness, our joy, the moments that have stopped up in our tracks.

The learnings, the desperation bringing us to our knees, then finding the energy to stand again and relearn our lessons. Starting a new life with someone, new families hoping for happiness - that illusive dream someone promised us.

Experiencing bone crushing loss holding on to those close remaining grieving together. Friends who understand. Coming out the other side - noticing the elegant butterfly appearing out of the corner of your eye following its every swaying movement gently settling on a flower across the street.

You honor your existence by being here and we thank you. Life is a gift to be experienced exactly as it is.

It's been a long journey to this point, but I have survived being off prescribed opioid medications for over 6 months! It seems like time has flown by. I have dealt with some serious pain after coming off the opioids. But, thank the good Lord for Gabapentin!!!! I don't know if I would have made it without it. But, then again, I know that I am STRONG AND MIGHTY!!!! And so are you!!!!! If you are struggling with tapering off pain medication, then you may be tapering too fast. I did it very slowly, under a physician's guidance. YOU CAN DO THIS!!!! BELIEVE IN YOURSELF!!!! I KNOW THAT THE PAIN IS REAL! To anyone suffering, you have my love and prayers!!!!
#Anxiety #Depression #ChronicIllness #AnkylosingSpondylitis #Narcolepsy #LivingWithPOTS #PosturalOrthostaticTachycardiaSyndrome #Bipolar1Disorder #PsoriaticArthritis #ChronicPain #Migraine #Endometriosis #Lumbarfusion #SpinalStenosis #SpinalFusion #prolactinoma #Love #Medication #Recovery #PolycysticOvarySyndrome #PudendalNeuralgia #Undiagnosed #GastroesophagealRefluxDisease #IrritableBowelSyndromeIBS - C