Pudendal Neuralgia

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I’m new here!

Looking forward to meeting others who also live with chronic pain. I am often depressed and anxiety ridden because of my pain. I’ve been on this journey since 2014 and have not found treatment that helps. I often feel lonely and isolated and had to retire early because of my pain. My hope is to learn how to deal with pain and change my mindset. It’s been difficult for me.

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Becoming a grandmother

I thought becoming a grandmother would be the most exciting thing in the world. Instead it’s made me extremely depressed because I don’t get to see him. I don’t even get a FaceTime with him. My heart is broken by the way I was treated after he was born. It was during the pandemic. I found out later her Mother was able to hold him. I was not able to hold him until he was 8 weeks old and I had to wear a hazmat suit. Her mother did not. She was able to hold him from day one. My husband and I are a lot older than her parents and we are not as well off financially. My son aloud this to happen and did nothing to stop it. I do not feel anything anymore. I have a brain injury that has gotten worse due to the depression and hurt I suffer with everyday. I don’t feel like a grandmother nor am I treated as one. On my birthday this past October I got a call from both my sons thats it. I waited for a FaceTime from my grandson that never came. I was devastated. They live close by it’s not like it’s out of state. We are not aloud to babysit him. We have offered and they make an excuse. Christmas with Santa Claus not us. Easter bunny not us. Valentine’s Day came and I finally had to say I had a gift and it would not reach him in time. She told me they would plan sometime to come out. They stopped in for 90 minutes sat and looked at their phones. He got his gift and they left. Everytime they leave I am crying and depressed. I hurt my back lifting him to get the mail. I’m still trying to heal my back. That was the last time we have seen or heard from them. We don’t seem to matter to them. I wanted to do something with Santa last year. My son says make it happen!!! I don’t know what he means by that. Then I see they took the train ride with Santa and we were not asked to come along. So if they already did it then why tell us to make it happen. I really have nothing to live for anymore. It’s getting worse and my son is now a stranger to me. The only way to protect my heart from more damage is to pull away. I really don’t know what else to do. I’m not rich Lyme disease took all my money. These last 3 years have been a living hell. Lost my mother , my brother and 6 others to suicide. Plus 22 more. I can’t even work anymore on line.

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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

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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.

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Frustrated with doctors!

I have been diagnosed with Pudendal neuralgia. I was diagnosed about seven years ago. I was seeing a specialist for several years and he did his best to help me and basically got to the point where there just was nothing else he could do. He was out of ideas. So I kinda feel like I’m back at square one. I talked to my family doctor and told her how frustrated I felt and that I feel like the doctors are just missing something in my diagnosis and maybe there’s something else going on here. So she ordered another MRI which won’t happen until May because we live in Canada and although it’s free it’s nightmarishly slow. My appointment was made back in November.

Recently she told me about a new doctor that’s coming to our area. This guy specializes in helping people with pain. My doctor wanted me to see him and I agreed. Today I got a phone call. This new doctor had reviewed my file and decided that he can’t help me with my pain and he recommends that I see a psychiatrist for a pain evaluation. I can’t tell you how frustrated and mad I feel about this. I have dealt with depression in the past but I’ve been free of that for at least 10 years. I’m not depressed in spite of the pain. I’ve got a wonderfully supportive husband and basically I have a good life except for the stupid pain.

When I was seeing the specialist, who I saw for several years, I did talk to him about the possibility of this being psychological. I hate the thought of it being all in my head but what if it is? The specialist I was seeing stopped me in my tracks and assured me that he has treated patients with psychological illnesses before and that’s not me. He assured me, 100%, my pain is very real and not at all psychological. I greatly appreciated that validation. So now do I have to convince my family doctor that my pain is real? Good grief. If I could get by without medication, then I would just stop going all together but I need my meds.

And to add insult to injury, my stepdad died so we went out of town for the funeral and came back with Covid. So now I am incredibly sick with that on top of all the pain. Most of my family also has it. We should’ve all stayed home.

Thanks for listening to me vent #ChronicPain #ChronicIllness #It ’s all in your head #frustrated

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

There's so much that I want to say about the last year. But, clearly the main thing on my mind is that I made it with no opioids, my friends!!!!! One whole year with no opioids! I have suffered from some horrible nerve pain, too.  May it have come from severe nerve pain or surgery pain; over and over I did NOT take anything but Tylenol or Ibuprofen. It was a tough year with many nights in tears, calling dear friends to help me cope. I made it through! I had been on high doses of opioids for 15 years, ever since I was diagnosed with #PsoriaticArthritis and then fell down a flight of stairs. I actually fell down a couple flights of stairs during this time and later broke my ankle, then tore a tendon in my ankle. I have been through a lot and I am just waiting to see what will be thrown at me next!!!!! I know that I can conquer 💪 it with lots of love and prayers ❤🙏💖💕!!!!!!

I have to say that the clarity is amazing and the world 🌎 is becoming more and more beautiful everyday ❤! I am loving thinking so clearly, again!
#Anxiety #Depression #ChronicIllness #AnkylosingSpondylitis #Narcolepsy #coping #LivingWithPOTS #PosturalOrthostaticTachycardiaSyndrome #Bipolar1Disorder #PsoriaticArthritis #ChronicPain #Pelvicpain #Migraine #Medication #PudendalNeuralgia #Love #Endometriosis #PolycysticOvarySyndrome #Recovery #Vasculitis #Stress #pelvic Dyssynergia #Lumbarfusion #SpinalStenosis #SpinalFusion #Happiness


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