Pudendal Neuralgia

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Pudendal Neuralgia
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    Community Voices

    The Pandemic caused me to be a hoarder and a slob

    #Anxiety #Depression #LymeWarrior #TraumaticBrainInjury #traumatic grief

    My house looks like a slob lives here. I have paperwork all over in every room. Just looking at it hurts my brain. I try and clean it up or organize it but I end up just moving papers in a different spot.

    I get into bed at night with trash on my bed. I have to move it all just to make room for myself. I lay there praying to God and asking why? Why did all those people have to die. I cry myself to sleep praying to see my loved ones that were taken since the pandemic started.

    I had just gotten my life back after a 14 year battle with co-infections from Lyme disease. I finally was leaving my house, seeing my friends, shopping. I had 9 months of somewhat of a life back then I was forced back into my house. Then in 2020 I got bit again and im back fighting for my life again. New symptoms to deal with. I grieve the life I had before.

    What I lost besides loved ones was myself. I don’t know who I am anymore. My first grandson was born during the lock down. I was able to see him 6 feet away 3 days after he was born. It was like I was looking at someone else’s grandchild not mine. I was not aloud to hold him because I can’t get a flu shot. The last one almost killed me.
    I found out later everyone was holding him except me. This was so hurtful and my son allowed it to happen. It started to become to painful for me to even go to see him. What was the point if I had to watch from 6 feet away. I still do not feel any connection to my grandson and that is my son’s fault. He is 2 years old now. We aren’t aloud to babysit him or take him anywhere by ourselves but her parents are. I pray to God I’m still alive when and if another grandchild comes.
    Funny thing I was aloud to hold my friend’s grandchild with no problem. When I was able to hold my grandson I was in a hazemat suit he was 8 weeks old. No one else had to wear one except me. Now that’s personal. I had 5 friends become grandmothers and they posted it on Facebook no one was wearing a mask or a haze mat suit. I’m not even aloud to show pictures of him to my friends because he’s not old enough to consent to it.

    I had to go into therapy because of this behavior which was personal and not due to the virus. At least that is what I was told by my therapist. My heart is still broken and it’s still beating but for what. ?

    This is not the way it was supposed to be. This is not the life I wanted or imagined. I am just existing.

    I know hoarding crafts that I will never make, jewelry I will never make it has to stop. A lot of stuff I bought most is now expired. Did I throw them away? Nope.

    I could keep writing about all I have lost but everyone has lost. So there is no point I guess. I did lose my Mom to the virus watched her die over zoom for 9 weeks. Then I found my best friend, my brother dead in his apartment. I think he was murdered but I can’t prove it. Now I deal with a fractured sternum and PTSD from that.

    Hoarding is caused by lost, trauma, stressful life events, a brain dysfunction. I’m not putting anymore labels on myself. I just wish I could stop it. I wish I could afford someone to help me get organized as I no longer can do that. I can’t afford much of anything. I sell things to make money but it’s not enough. I’m too sick for a real 9-5 job. I do have a on line wholesale shopping club with weight loss products but that’s still not enough. I’m worrying myself to death literally.. I need extensive dental work due to lyme. I was scammed out of my savings for that. More loss. It effects me emotionally, physically, mentally.

    I’m just rambling now it’s late here and my brain is tired. Im actually getting tired of living because it’s just so damn hard. I’ll write some more later. Thanks for reading this post. Since 2019 I lost 27 friends and family. Isn’t that enough???
    #LymeWarrior #PTSD #LivingWithPOTS #PudendalNeuralgia #ChildhoodAbuse

    17 people are talking about this
    Community Voices

    Trying to have a social
    life while unable to sit for very long #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.

    Community Voices

    Frustrated with doctors!

    <p>Frustrated with doctors!</p>
    11 people are talking about this
    Community Voices

    What types of nutritional drinks and other beverages does everyone consume while on a liquid diet? #Gastroparesis 🧃🥤🧋

    <p>What types of nutritional drinks and other beverages does everyone consume while on a liquid diet? <a class="tm-topic-link mighty-topic" title="Gastroparesis" href="/topic/gastroparesis/" data-id="5b23ce8200553f33fe99328c" data-name="Gastroparesis" aria-label="hashtag Gastroparesis">#Gastroparesis</a>  🧃🥤🧋</p>
    7 people are talking about this
    Community Voices

    One Year Opioid Free!!!!!🥳💯🤘💥
    #Recovery #ChronicPain

    <p>One Year Opioid Free!!!!!🥳💯🤘💥<br><a class="tm-topic-link ugc-topic" title="Recovery" href="/topic/recovery/" data-id="5b23ceb100553f33fe99b555" data-name="Recovery" aria-label="hashtag Recovery">#Recovery</a>  <a class="tm-topic-link mighty-topic" title="Chronic Pain" href="/topic/chronic-pain/" data-id="5b23ce6f00553f33fe98ff5b" data-name="Chronic Pain" aria-label="hashtag Chronic Pain">#ChronicPain</a> </p>
    29 people are talking about this
    Community Voices

    Seeing family

    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

    8 people are talking about this
    Community Voices

    Reflections at a 50 year class reunion

    #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.

    1 person is talking about this
    Community Voices
    Community Voices

    Does anyone know any alternatives to coffee ☕ (that tastes similar to coffee)?

    <p>Does anyone know any alternatives to coffee ☕ (that tastes similar to coffee)?</p>
    56 people are talking about this
    Community Voices

    6+ Months Opioid Free!!!! HOORAY!!!

    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

    23 people are talking about this