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It’s been a minute

Hello dear ones, it’s been awhile.
How is everyone doing?
I’ve been mixed. A lot has occurred since I last gave an update. I’ve wanted to give an update but I’ve mostly been unable or incapable of doing so. For a variety of reasons.

I’m not sure tonight is the night I give an update. I kinda have a lot of strong emotions and cptsd stuff moving through me this week…. So, I’m trying hard to pull myself through this.

I will say since we’ve last spoken, I’ve, seen a dentist, an oral surgeon, a cardiologist and a neurologist at Cleveland clinic. All by medical transport or volunteers. I recently got a private portable o2 machine after some seriously challenging stuff at Cleveland Clinic.

How about I give you guys a medical update later though. I’m not really able to go into much of it lately. It’s been too much at times. I got a really awful neurologist at Cleveland clinic. In good news, I got a really good cardiologist I will tell you more about later.

I’m writing a cathartic blog tonight because…. I can and I want to. I’m trying to move some of this through me. And, I simply don’t have the funds for therapy these days.

I have so many feelings coming up this week. My normal storm of cptsd is rearing it’s ugly head this week. Maybe last too. Can’t remember. Everything gets discombobulated and foggy. I lost track Of time. Reels play over and over. I’m there. But I’m not. I’m here. It’s hard to be in The present lately. I share this incase anyone else experiences this. My. God you aren’t alone. I feel like I’m pretty good at keeping up with methods and things such as that….. but sometimes…. It just ultimately sucks. There’s no other way to describe it. The waves are so strong, so large and you just keep getting pushed under. That’s where I am at.

And today, I realized an immense loneliness lays within me. And sadness. And grief. I’ve been abandoned by so many (not looking for sympathy) because of this illness. It really shapes and forms you. And conditional love is the worst. It’s been so prevalent in my life. And quite detrimental to me.

So many times I can dig within and find my reserves. I’m used to being solo in this land of one room….. but my battery has been so low. I’ve not had it in me. I feel so unloved. And so …. Much grief over that. By my mother, my husband, my sister and the list goes on. I know many of you get it. My mother didn’t even call to see how my Cleveland clinic trip went. Sigh. I could go on and on with the list of people that don’t care about me. It’s so….. upsetting to my system on so many levels. And I struggle to comprehend.

I know many of them do love. But they love me differently now. And, I don’t think I can open my heart anymore. It’s rarely worth it and causes me so much pain. Sometimes, you just want someone to hug you. Or hold your hand. And tell you pretty things. And…. I really have such a lack of that in my life. And I’m so tired of being reprimanded and scolded for being sick. By my family. By drs. By friends. The woman that disappeared in 2017, is never returning an unchanged woman. I literally was rejected by my family for this. It hurts. So bad. I know I have my children’s love. I feel that. I do. And a few friends. I feel it. But friends are fleeting and in general my situation is too heavy for most. Once I start sharing how I really feel, most close up. Just natural human self preservation. I get it. Also getting so bad with covid this year (you know my home healthcare says ‘hospice’ on the bill?) not that it was, but, it’s just…. It was a very heavy and scary spring for me. And it scared people off. For instance, one friend is neural retraining and asked me to not tell her I was having seizures etc.

like, ok. ….But, she’s allowed to vent to me about all that occurs in her life and issues. It’s so…. Mind jarring. We shouldn’t trauma dump. This i understand. But also, some of us are living through hell and just want to. Be heard. Family and drs certainly aren’t listening to some of us. Again, another conditional friendship. Especially when we just survived covid and 8 ambulances in one month. So sorry that me having seizures put you out. Like I literally had to watch what I say and protect her while I was struggling hard with unknown seizures. Um. Make it make sense!!!

Yay, more abandonment for a woman with so many wounds.

I just feel feelings tonight.
Sometimes it helps to have a witness when you feel such deep despondency. I’m so tired of being my own witness and main cheerleader. Somedays, I think the heartbreak I’ve experienced over all of this and family and friends strife etc…. Has fractured a part of my soul.

Or at least it feels that way.

I guess I keep sailing. Floating. Forever lost at sea.

I’ve recently had quite a few people say that they couldn’t do what I have and fill in the blank. Well meaning people. But it’s so triggering. People are asses. You shouldn’t say that to people who have been at this for 7 years (severely). Because they are real humans and have feelings too. And some of them are hanging on by threads at times.

Maybe thats what I want people to know,
As tears stream down my face…
I’m a real human and I have feelings.
My energy is not just for taking. And my feelings matter. I know it falls on deaf ears and blind eyes within my circle.
But, still I will say it here.

To attempt to satiate my very trodden soul.

❤️‍🩹


Carly don't be sad
Life is crazy
Life is mad
Don't be afraid

Carly don't be sad
That's your destiny
The only chance
Take it, take it in your hands

Life is mad
Don't be afraid

Comments

“The wound and the gift cannot be divided. “ ~s. Cope

“No matter how many times the heart cracks, it’s only purpose us to break open. When you understand the hearts purpose, you may allow it to break apart so deeply that the pieces forget how to reassemble.

When your heart opens completely, there will be no other alternative but to live for the well being of all. This doesn’t mean you suffer as a way of sparing others. It means you are drawn to love your own heart so deeply that through the law of one, the fabric of reality is transformed for all.” ~ Matt Kahn
 
Focus on being a nonjudgmental, supportive friend to others and your life will be enriched despite the incredible suffering. Love and relationships are all we have in this life.

Try not to have expectations of how others should respond to your situation, because you’ll only be disappointed. Instead, take the focus more off of yourself. I know, it’s all-encompassing to be severely chronically ill and we can’t help but talk about our needs. But to others, it can be exhausting and off-putting. That’s just human nature.

It’s almost as if you have to pretend you don’t have a life-altering chronic condition to truly connect with the people who are not unwell. Nobody is going to understand your situation like you do. And nobody is going to give it the same level of compassion that you can give to yourself.

Instead of thinking you’re so different, see what you have in common with others and how you can relate to them. Loneliness is a killer in and of itself. Relationships matter a great deal.
 
Well, hi there Sunshine. It has been definitely more than a minute since we heard from you and I'd really like to hear more about what you were told at the Cleveland Clinic, by cardiologists, etc.

I, myself, have two different types of seizures. Medications don't control them so yes, you can talk about them. I've also had seven stents implanted and now they're doing an advanced form of angioplasty. So, if needed.....all are fairly easy surgery and I don't want you to worry.

I don't think about all of the specialists I need. Last year I needed a break....and took the entire year off. Of course I realize that I'm a lot older than you (77) but yes, it does take its toll.

I'm glad that you were able to get oxygen. Does that help do you think?

As far as family is concerned, it's almost as if they've all ganged up and decided that your playing make-believe or something. They're a waste and for your own sanity I agree that you have to harden your heart towards them. It's hard to understand, but that's the reality you're facing. All of the excuses in the world simply don't matter.

Epilepsy can attack any one of us at anytime. It's nothing shameful, it's a condition....true, another one! Still, it can cause damage to the brain and must be addressed. Like I said, medications can stop those seizures. Side effects usually disappear within a month to 6 weeks. Talk to your doctor if they don't.

Yes, I'm sure that you want your hand to be held by those you care for. To be loved and treated as a healthy human being. I'm sorry that you've been disappointed so many times and no, you don't deserve it (if you're thinking that.) Hold onto your children as they seem to give their love and caring freely. Continue to partake in their lives as much as you can.....and tell them that's exactly what you're doing. They're love is worthwhile and both seem to be doing well. Not everyone can say that!

Yes, we're always glad to hear from you and I'm glad that you saw so many doctors and hope they had some good input. I know some didn't, but others may have. Bless you for dealing with what you do. Fine enjoyment where you can....and just learn to harden your heart somewhat. At least until something changes. Much love, Lenora
 
Focus on being a nonjudgmental, supportive friend to others and your life will be enriched despite the incredible suffering. Love and relationships are all we have in this life.

Try not to have expectations of how others should respond to your situation, because you’ll only be disappointed. Instead, take the focus more off of yourself. I know, it’s all-encompassing to be severely chronically ill and we can’t help but talk about our needs. But to others, it can be exhausting and off-putting. That’s just human nature.

It’s almost as if you have to pretend you don’t have a life-altering chronic condition to truly connect with the people who are not unwell. Nobody is going to understand your situation like you do. And nobody is going to give it the same level of compassion that you can give to yourself.

Instead of thinking you’re so different, see what you have in common with others and how you can relate to them. Loneliness is a killer in and of itself. Relationships matter a great deal.
My focus is very rarely on myself. I should be more focused on myself. That’s partially how I ended up this severe. I’m often the person people go to in life for support.

Because I vent on a blog, isn’t representative of every moment of my day. I come here to release massive amounts of feelings at times that beyond journaling, I have no other way of doing.

Yeah, but sometimes loneliness is worth the trade off. In my eyes.
 
Well, hi there Sunshine. It has been definitely more than a minute since we heard from you and I'd really like to hear more about what you were told at the Cleveland Clinic, by cardiologists, etc.

I, myself, have two different types of seizures. Medications don't control them so yes, you can talk about them. I've also had seven stents implanted and now they're doing an advanced form of angioplasty. So, if needed.....all are fairly easy surgery and I don't want you to worry.

I don't think about all of the specialists I need. Last year I needed a break....and took the entire year off. Of course I realize that I'm a lot older than you (77) but yes, it does take its toll.

I'm glad that you were able to get oxygen. Does that help do you think?

As far as family is concerned, it's almost as if they've all ganged up and decided that your playing make-believe or something. They're a waste and for your own sanity I agree that you have to harden your heart towards them. It's hard to understand, but that's the reality you're facing. All of the excuses in the world simply don't matter.

Epilepsy can attack any one of us at anytime. It's nothing shameful, it's a condition....true, another one! Still, it can cause damage to the brain and must be addressed. Like I said, medications can stop those seizures. Side effects usually disappear within a month to 6 weeks. Talk to your doctor if they don't.

Yes, I'm sure that you want your hand to be held by those you care for. To be loved and treated as a healthy human being. I'm sorry that you've been disappointed so many times and no, you don't deserve it (if you're thinking that.) Hold onto your children as they seem to give their love and caring freely. Continue to partake in their lives as much as you can.....and tell them that's exactly what you're doing. They're love is worthwhile and both seem to be doing well. Not everyone can say that!

Yes, we're always glad to hear from you and I'm glad that you saw so many doctors and hope they had some good input. I know some didn't, but others may have. Bless you for dealing with what you do. Fine enjoyment where you can....and just learn to harden your heart somewhat. At least until something changes. Much love, Lenora
Lenora, I cried alot reading this. I’m sure because of your maternal presence. Thank you. I really appreciate you sharing your story. I’m so sorry you contend with so much dear one.

I’m an absolute mess lately. When I. Settle more, I will give a medical update. Mostly, drs have not cared about my unknown variety of seizures. It’s been baffling and surprising. I will get into that more when I give update. I’m sure it’s because I’ve been neglected so long and I’m a hot potato no one wants to pick up. My case is discrimination with a capital D.
 
My focus is very rarely on myself. I should be more focused on myself. That’s partially how I ended up this severe. I’m often the person people go to in life for support.

Because I vent on a blog, isn’t representative of every moment of my day. I come here to release massive amounts of feelings at times that beyond journaling, I have no other way of doing.

Yeah, but sometimes loneliness is worth the trade off. In my eyes.
Sorry, I didn't mean to be overly preachy there or criticize you directly. I guess we're probably different. I know I have to make concessions with people in order to have relationships or contact with them. We're behind the eight ball with an illness like this. I feel the loneliness affects my mental health too much, so the trade-off is worth it to me. Granted, as long as the person isn't completely toxic, which goes without saying.

I developed so much more tolerance for people, such as my parents and friends that probably think I'm just a malingerer and lucky me because I don't have to work, and have found it so much easier and less stress on my body and mind. My father still asks me to go out to lunch with him to a restaurant. "Just try it," he says. He's clueless about how much I truly suffer from this physical illness. I can get mad at him, like I used to, or I can brush it off and just chalk it up to him being a moron, basically (sorry, Dad, love you).

Anyway, I know you get love from your kids and that's one blessing you are very grateful for. It's so hard because we're just human and our most basic needs aren't even being met! Prayers for you and all of us with this condition.
 
Maybe thats what I want people to know,
As tears stream down my face…
I’m a real human and I have feelings.
My energy is not just for taking. And my feelings matter. I know it falls on deaf ears and blind eyes within my circle.
But, still I will say it here.
Oh Sunshine, I hope you will accept a virtual hug. Words fail me.

I always appreciate your updates, even these feeling shares, as you express yourself as one of the realest humans I am acquainted with.

You matter, your feelings matter and your energy matters.

I wish I could offer some encouraging thing to fill you up just a bit.

Right now I'm struggling with my new own diagnosis that has honestly taken my hope, so I'm a bit numb right now. I don't do emotion well, so hearing your cry helps me tap into my own, and relate to yours.

Thank you for sharing; you are such a blessing to this site. You are appreciated and valued here.
 
I don't know the point at which we start letting diagnoses bounce off us like a rubber ball, but that's exactly the way I feel. I don't even list them....that would be too much.

I like having a caring doctor, that means so much. One can still be busy and yet be caring. A touch on the shoulder, a smile....just something that says, "I know you're there and I'm on your side." Not much, but it means so much.

I think Sunshine had just had enough of always being the giving one, especially when nothing ever, ever returns. I truly was hoping the Cleveland Clinic would offer something, but our cases (in many instances) are just very complicated.

As far as heart problems go, I think of my father and how he died at the tender age of 40. How far cardiology has come. I know most of you are too young to remember the first heart transplant. It was so hard to wrap your mind around a heart being put into another person. Anyway, he died and many of the procedures I have now could have saved him. At some point I'll stop having them (when my husband dies....he's almost 80).

So no, I can let the darts just bounce off me. One diagnosis begets another and things either get dealt with or they don't. Making peace with the end, death, is a great healer in many ways. I did that many years ago....and it's almost as if it has helped. Why? I don't know, but it has.

My mother was afraid to die. I'm not like that in the least and yes, there were things I had to settle in my conscience. It was a process - just like so many other things in life.

I wish each of you better health. Failing that, acceptance in some form. There are so many people universally who suffer, we have a brother and sisterhood and we often dwell in the house of the unknown. May you all find peace whether it's better health or learning to live with these illnesses. Yours, Lenora
 
I have so many feelings coming up this week. My normal storm of cptsd is rearing it’s ugly head this week. Maybe last too. Can’t remember. Everything gets discombobulated and foggy. I lost track Of time. Reels play over and over. I’m there. But I’m not. I’m here. It’s hard to be in The present lately. I share this incase anyone else experiences this. My. God you aren’t alone. I feel like I’m pretty good at keeping up with methods and things such as that….. but sometimes…. It just ultimately sucks. There’s no other way to describe it. The waves are so strong, so large and you just keep getting pushed under. That’s where I am at.

Somehow you managed to describe my own emotional state. The waves have been SO strong for me this year, and I have allowed myself to get pulled SO very far from shore, that I wonder if I will ever touch land again.

You wrote that you are trying to move through these feelings and experiences, which I admire.

Perhaps I can learn from you how to start swimming through these feelings and experiences, but for now, I'm just being tossed around, and sometimes pulled under, by the waves. I don't feel like treading water anymore.

The woman that disappeared in 2017, is never returning an unchanged woman. I literally was rejected by my family for this. It hurts. So bad.

I know. It hurts so deeply. So badly. I feel and hear your pain. I wish I could lend you a shoulder to cry on.

It sounds like you and I are both able to see, feel, and acknowledge our loved one's compassion fatigue, their frustration and stress, their exhaustion and burnout, maybe even their fear, but it boils down to what you said:

I know many of them do love. But they love me differently now.

The realization of this is exquisitely painful isn't it? It's like a dagger to the heart.

Admittedly, my family was there for me for a lot longer than yours, but the demands of my illness and the passing of so much time have taken its toll on our relationship to one another.

About 4 years ago, I could feel them slowly slipping away from me.

I can feel being seen as an obligation rather than a beloved sister or daughter.

And, worst of all, for me, was being relegated to an adjunct family member. Like a distant second cousin who you see a few times a year at family functions, but you don't ever think about them, or call or text to see how they are doing. I feel "out of sight; out of mind".

There is more I'd like to respond to in your post, if that's ok, but I should stop thinking and typing for now.

I don't know if my words are right, or even resonate with you, but I'm just trying to get across the idea that although you may be alone in your house and alone in your city, you aren't alone here. ❤️
 
You guys are such beautiful humans.
I love y’all and thank you for sharing with me. I saw this and it made me think of my feelings lately :

“Today I said "I'm fine", not once
But five times altogether

When people asked "how are you?"
Then made small talk of the weather
And so I hid behind my mask


The one I'd worn a while
I set in place my bravest face And dressed it with a smile


And that was how the day went
All "I'm fine" and talk of rain

Until somebody asked me how I was
Then asked again
They asked if I was truly fine


And I said I was not
And they said they were sorry
That they couldn't do a lot


But then they sat beside me
Whilst I spoke the truth at last
They listened and they held me
As the tears slipped through my mask


And where before,
I'd felt I should Maintain
this brave façade,
I realised there was much to gain
By letting down my guard


See, though my load was still the same It now was not as heavy

'Cause sitting and offloading it
Had helped a bit already


Today they asked "how are you?"

And told them I was fine
'Til someone saw behind the mask
And asked me one more time


And though they may have felt
That there was little they could do
They'll never know how much it meant


To tell someone the truth”


*******


- Becky Hemsley
 
Oh Sunshine, I hope you will accept a virtual hug. Words fail me.

I always appreciate your updates, even these feeling shares, as you express yourself as one of the realest humans I am acquainted with.

You matter, your feelings matter and your energy matters.

I wish I could offer some encouraging thing to fill you up just a bit.

Right now I'm struggling with my new own diagnosis that has honestly taken my hope, so I'm a bit numb right now. I don't do emotion well, so hearing your cry helps me tap into my own, and relate to yours.

Thank you for sharing; you are such a blessing to this site. You are appreciated and valued here.
I am so very sorry to hear of your woes 😞sometimes it’s all so heavy… so I do hope you set it down for awhile. You deserve that. Also, these diagnoses can all kiss my a** 😜🤣 have you ever read Norman doodles book the brain that changes itself? And how people can return from severe diseases etc. although gravity is strong…. I like to think humans are malleable. Or kinda 😜

Thank you for sharing this.
What you said means alot to me 🥹💗
 
Somehow you managed to describe my own emotional state. The waves have been SO strong for me this year, and I have allowed myself to get pulled SO very far from shore, that I wonder if I will ever touch land again.

You wrote that you are trying to move through these feelings and experiences, which I admire.

Perhaps I can learn from you how to start swimming through these feelings and experiences, but for now, I'm just being tossed around, and sometimes pulled under, by the waves. I don't feel like treading water anymore.



I know. It hurts so deeply. So badly. I feel and hear your pain. I wish I could lend you a shoulder to cry on.

It sounds like you and I are both able to see, feel, and acknowledge our loved one's compassion fatigue, their frustration and stress, their exhaustion and burnout, maybe even their fear, but it boils down to what you said:



The realization of this is exquisitely painful isn't it? It's like a dagger to the heart.

Admittedly, my family was there for me for a lot longer than yours, but the demands of my illness and the passing of so much time have taken its toll on our relationship to one another.

About 4 years ago, I could feel them slowly slipping away from me.

I can feel being seen as an obligation rather than a beloved sister or daughter.

And, worst of all, for me, was being relegated to an adjunct family member. Like a distant second cousin who you see a few times a year at family functions, but you don't ever think about them, or call or text to see how they are doing. I feel "out of sight; out of mind".

There is more I'd like to respond to in your post, if that's ok, but I should stop thinking and typing for now.

I don't know if my words are right, or even resonate with you, but I'm just trying to get across the idea that although you may be alone in your house and alone in your city, you aren't alone here. ❤️
Somehow you managed to describe my own emotional state. The waves have been SO strong for me this year, and I have allowed myself to get pulled SO very far from shore, that I wonder if I will ever touch land again.

You wrote that you are trying to move through these feelings and experiences, which I admire.

Perhaps I can learn from you how to start swimming through these feelings and experiences, but for now, I'm just being tossed around, and sometimes pulled under, by the waves. I don't feel like treading water anymore.



I know. It hurts so deeply. So badly. I feel and hear your pain. I wish I could lend you a shoulder to cry on.

It sounds like you and I are both able to see, feel, and acknowledge our loved one's compassion fatigue, their frustration and stress, their exhaustion and burnout, maybe even their fear, but it boils down to what you said:



The realization of this is exquisitely painful isn't it? It's like a dagger to the heart.

Admittedly, my family was there for me for a lot longer than yours, but the demands of my illness and the passing of so much time have taken its toll on our relationship to one another.

About 4 years ago, I could feel them slowly slipping away from me.

I can feel being seen as an obligation rather than a beloved sister or daughter.

And, worst of all, for me, was being relegated to an adjunct family member. Like a distant second cousin who you see a few times a year at family functions, but you don't ever think about them, or call or text to see how they are doing. I feel "out of sight; out of mind".

There is more I'd like to respond to in your post, if that's ok, but I should stop thinking and typing for now.

I don't know if my words are right, or even resonate with you, but I'm just trying to get across the idea that although you may be alone in your house and alone in your city, you aren't alone here. ❤️
I am so very sorry for your waves zebra 😞
Sometimes it’s just really all so much and all we can do is lay on the water while it bounces us between waves. Sometimes, I float. Sometimes, I sink. I try my best…. To not judge myself. We endure so much with these illnesses.


It is like a dagger to the heart 😞💔then you feel you have to protect them bc they aren’t able to handle the entire situation. And most are doing their best. Even if it’s not really that good 😅😜. It’s…. So many feelings. And I’m very sorry you are all too familiar as well. Even if in slightly different ways. And yeah, it’s just like you are washed from their world. Yet, my family doesn’t consider how that’s affected me. They mostly only think about how it’s affected THEM.

I appreciate your words so much. Do state anytime here. You know I’m open and like when we can all process life together. And I’m grateful for your shoulder to cry on. I felt. To each of you. Appreciate you all reading a not so happy blog.

But then again, why do I put pressure on myself to be this happy acceptable people pleaser for others to accept me? I feel… I’m over those days. It’s ok if you go and it’s ok if you come. That’s a powerful place to be.

💗
 
I'm just being tossed around, and sometimes pulled under, by the waves. I don't feel like treading water anymore.
That describes me pretty well too. What was unsettling was I had that same feeling of being dragged under by the water the morning you wrote this. That startled me, as water has been my love and friend for much of my life. I learned to swim as a teen (I had been deathly afraid but attracted before then). Once learned, I took to the water like an otter and then bought a canoe and learned that and eventually went on solo (with dogs) multi-day canoe camping trips. Couldn't get enough. Now, I haven't been on the water in 15 years. So when that feeling came Sunday, it felt like an old friend had turned on me. And I don't feel like treading water anymore either.

And, worst of all, for me, was being relegated to an adjunct family member. Like a distant second cousin who you see a few times a year at family functions, but you don't ever think about them, or call or text to see how they are doing. I feel "out of sight; out of mind".
Well said. I am technically family but not familiar family.

Getting these feelings out allows me to feel them, and gives hope to get past them. We can share each other's burdens and help each other along. Thank you Zebra and Sunshine. 🙂
 
I am so very sorry to hear of your woes 😞sometimes it’s all so heavy… so I do hope you set it down for awhile. You deserve that. Also, these diagnoses can all kiss my a** 😜🤣 have you ever read Norman doodles book the brain that changes itself? And how people can return from severe diseases etc. although gravity is strong…. I like to think humans are malleable. Or kinda 😜
Thank you. This means a lot.

I don't know if I have heard of his particular book, but I have a few on the topic. I think that is something I need to look into. But yeah, that gravity thing -- all the learning requires ENERGY, and I don't have much.

Yet with what I have, I suppose I will build a raft to rise on the waters, even though that may take years. I love the scene from Cast Away where Hanks' character describes that one day the tide brought him a sail. That changed everything. He now had escape from the waves that held him prisoner. You all here are like the wind. I just need a sail.

(Edited to add link to book)
 
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Hi, @sunshine44

That piece of writing that you shared was very powerful.

I miss the give and take of true blue friendship. When one friend is need, the other rises to the occasion (either in word or in deed) and vice versa.

I long to be in deep, authentic relationship with other humans again. Where I don't have to make small talk about the weather and side-step questions about myself for the sake of keeping things polite and palatable.

Ugh.
 

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