To Share or Not To Share

When I began writing this blog, I chose to do it anonymously.  That way, I would have the freedom to write what I wanted about who and what I wanted and not hurt anyone’s feelings.  Yesterday, I decided that I was ready to branch out and reach more people, but not quite ready to let the people I actually know in on it. So, I opened a new Twitter account.

My old Twitter account would have re-posted anything I posted on it onto my Facebook page as well.  I don’t know when or where I set that up, so of course, I didn’t know where to undo it, Therefore, I have a new Twitter account, one I plan to use because I never used the other one.  The people I know don’t care if I’m feeling poorly.  They don’t care if I overdid it the day before and now are unable to get out of bed, and then have to stay in bed for a few days.  I just don’t fit into people’s busy lives and I can understand that.  However, that is my life now and if I tweet that I’m on my way to see the doctor or I tweet the date of my knee surgery I want it going to someone who cares.  Someone who understands and therefore the news is either important enough for them to care but not so important that people are going to want to come from another country to “make sure things (things meaning M-) are ok”. Actually, that wouldn’t be so bad except I don’t think that his family understands the severity of my illness. Some may even think that I’m making it up for attention since I have to “be good” around them. Of course I may be wrong, but that is how it felt the last time we were all together (see ‘Road Trip).

After I created the new account, however, I realized that I had no friends to add.  I couldn’t, for example, create a new Facebook account because everyone I know is on the other.  Of course I could create the account, but if there’s no one to interact with, then what’s the point?  The thought made me very sad.  This was last night (well, night before last considering I am writing this and it is almost 5 am) at approximately 4 am when the aforementioned sadness hit, so I was able to cry.  And I did.  I cried myself right back to sleep.  So hey, if you’re looking for a cure for insomnia, save all that pain and frustration until nighttime and then let those tears loose.  After a good 30-45 minute cry I am out every time (especially if I’m lying down and crying into the pillow).  I know it’s an odd suggestion, but then I’m odd…my regular readers should expect some quirky-mess from me by now.  When I woke back up at 6:30…wait, I need a disclaimer: (Disclaimer: I didn’t say you would sleep for an extended period of time, just that it would put you to sleep.  I should also let you know about the extremely puffy eyes you’re gonna have when you wake up after that 30 minute cry.  I don’t want to be blamed for them.  It just happens people…oh yeah, any advice given anywhere on this post is from my experiences and I don’t always do the right thing so you should probably think for yourselves or ask a doctor…end of disclaimer) lol.  I should probably put a disclaimer permanently on my page somewhere…I’ll work on that.

So, after a good cry, and a little sleep, my mind started trying to mentally go through everyone on my Facebook friends list to see who I could trust with my blog (there has only been one person so far). Of course, all of M-’s family is out of the question (I mean, they’re in-laws and they are going to take his side) which therefore would leave me with the need to edit the posts I already have and to watch my subject matter in the future by not mentioning him again except for to say that he’s great about taking me to the doctor and caring for me when I’m really sick (both of which are true by the way).  But I can’t do that.  My whole point in this blog was to help other people (and hopefully myself along the way) and to let people know that they aren’t alone, that there are countless numbers of us ready to take you and *softly* squeeze you.  there are people who will understand and be there when you need to vent.

I can’t and won’t change what I’ve written because I’ve written from the heart.  And besides, relationship issues can arise with any loved one for any number of reasons, but especially when one of them suffers with chronic pain.  It is hard for them to understand a pain that they can’t feel or see.  Our pain is a never-ending cycle of suffering (physically and mentally) and as much as they might like, they can not do anything to help us…can you imagine how hard that must be for them?  Add to that the fact that “people with unrelenting pain…also have trouble sleeping, are often depressed, anxious and even have difficulty making simple decisions”. That is a lot of burden for any relationship to bear especially a romantic or patient/caregiver relationship.  The topic of relationship issues is not only applicable to the discussion of pain, but also to the examination of how emotional issues can worsen physical pain. Therefore, I will not change my blog so that others can read it.

I believe I will carefully go through my “friends” list and pick out a few who really wouldn’t give a damn one way or the other and then go ahead and then either let them know about this blog or my new Twitter page where I will be “tweeting” each new post. If they want to read it ok and if not ok. But I feel that people I know need to know what is wrong with me. Adhesions is an illness that far too little people know about, but far too many suffer from. Some cases are more extreme than others and I just happen to be on the extreme side.

I think what I mean to say with all this rambling is that I’m tired of hiding here at home. I want my best friend since elementary school to know why I haven’t been around more to spend time with her beautiful twin boys. I have been hiding…because I didn’t want anyone to ask me how I am. This blog is the best way to try to explain to people what I go through. I can sit here and wallow about the fact that no one cares, but if I don’t let them know – don’t give them a chance to understand – then I won’t ever know if they care or not. I do know that if I give them a chance to read my blog, then conversation can resume and I won’t have to answer that awful question “how are you doing” that so often gets asked because it’s just what you do and so often gets answered “fine” to keep from having to explain otherwise.  If they’ve read, they’ll already know. And I will know who really cares. However, if people are too busy in their lives to worry about mine that’s ok. I have met people here who really do care, who write me and ask me how I’m feeling and when I say not great they completely understand. Do I really need any more than that?

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14 thoughts on “To Share or Not To Share

  1. I simply cannot articulat a proper response to the ‘depth’ of this arwon’t be the eyes of people we can see face to faceticle…I feel instead of babbling on here about just how I can relate to it, I will simply share it with the 2-3 people in my life who genuinely would care to read it…All of the others will do as they always do and “Title Shop it” as another ‘meaningless’ post from people who are always in pain and therefor meaningless themselves…

    joynpain2…?

    Keep writing…We ‘Meaningless Pain Bloggers’ just may well open a few eyes one day…Sadly though, it won’t be the eyes of people we can see face to face…It will be those we can’t see face to face…

    I have said this to you before, but I not care who sees what I write either…Trying to not offend them or THEIR friends when they read is over…Our writing DOES HELP people like us FEEL BETTER.

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    • Thank you. I agree that we will someday open some eyes about our suffering…and our strengths. That is exactly why I was looking at going to other social media sites, even if it is just to send them a copy of what I write on here. I want more people to see it…to know that they’re not alone…or to learn something new. With that said, thank you for the share!

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  2. Hey, friend, just read your message and I hope you aren’t leaving wordPress because I don’t have a twitter account, don’t know how to do it and I really don’t want one. So, please let me know how I can contact you if you are leaving WordPress, ok? No twittering or instagram for me. I can barely do this.
    I hope you are doing better today. I know that was a stupid thing to say. I’m not doing well, either. But, life goes on from my bed. I hope to hear from you soon, girl. My adhesions buddy.
    HUGS
    Tammy

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    • I’m not going anywhere! The point I was trying to make is how first of all, WordPress asks if we want to connect with I don’t know how many different social sites when we post. Since no one knows about my blog I can’t post to Facebook. Basically, I was contemplating whether I should tell a few people about my blog or not. Either way I wouldn’t just publish it on Facebook for everyone, but it feel I have been hiding behind these closed doors for too long and need some people to understand why and the blog seems like the best way.

      I have met way too many wonderful people (like yourself) for me to want to leave WordPress. I just thought that by adding another social media site or two I would be able to get the word out about adhesions and other invisible illnesses like fibromyalgia to more people – raise more awareness. Besides, if hell froze over and I wanted to leave WordPress, you have my email address, remember? All those messages we send every day -Google and I don’t think anyone could get away from Google too easily nowadays. You even use your Google account for You Tube. Craziness! Either way, I’m not going anywhere and I am still emailing you as often as possible to check on you and let you vent. I love you, my adhesions sister!

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  3. Just discovered your blog through another mutual blogger. I’m hooked!! Only read this one post so far – but I have a feeling I will be up late tonight reading all your other blogs 🙂 I’m new to the blogging world – as a participant – but not to the invisible illness and chronic pain worlds. So glad I ‘found’ you!!!

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    • Well I am honored that you would stay up reading my posts! I. Tend to ramble, so they can get long sometimes, but I write from the heart and most of the time I just think it and write it and there’s not too much analyzing along the way. That’s why I feel privileged .

      As far as you ‘finding’ me, I’m glad you found me too. Does your name happen to be Tammy? I was supposed to be looking for a Tammy to ‘find me’ on here. If not, that’s ok and welcome to my blog. If so, I have already heard a little about you and would love to “talk” with you. You can get my email address from either by either hiving over the gravatar it will take you to that site or in the ‘about mr’ section. .. Take care ..

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      • My name is Tami but I don’t think I’m the one. I’ve read a few of your blogs and we have so much in common!
        Not that is a good thing. I found you through another blogger and guessed you wrote about chronic pain. But I see you
        Suffer with adhesions. I have never seen anyone write of, comment on or talk about adhesions. There are several auto immune illnesses I have been recently diagnosed with and they cause my chronic pain. However before this, I have experienced some symptoms over the years from adhesions. At 21yo I had to have an emergency c-section. That was 27 years ago and was the old school vertical ‘gotta get the baby out NOW’ incision, not the bikini-line they do now. One month later, my appendix ruptured. Unfortunately, no one around me figured this out until over a week later. Needless to say, I was septic and odds were against me living even after making it through surgery. Years later, after 2 more c-sections and a partial hysterectomy, I developed cysts on my ovaries. Like you, I went to gynecological oncologist because I knew that would be my safest choice given that my entire abdomen was a complete mess.

        What really struck me was you description of the pain from your adhesions. Never known of another one. Reaching for something and feeling like a rubber band inside me had stretched to its limit and then a pain like someone’s hand was reaching in my abdomen and grabbing a fistful of my insides at one end or the other of the rubber band would take my breath away and stop me instantly in my tracks. I definitely feel your pain. The fetal position with a super soft pillow to cuddle was my preferred treatment.

        Wow. So, all that to share our ‘bond’ (hahaha we are bound together like . . . Yeah, you got it — ADHESIONS!!) ( this twisted sense of humor has kept me going thru everything life has thrown) anyway . . . All that to ask you a question or two. How did you determine you had adhesions – just from going thru another surgery? I’m wondering if any test would show them? I’m having an MRA for some numbness in my leg and this will check arteries. Dr explained possible causes and adhesion-type tissue could be causing ‘things’ to stick together in my abdomen.

        Whew!!! I just started reading blogs and am toying with sharing my own ramblings. Really glad I found yours! Ramble on, fellow Pain Pal!

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        • Well, Tamil, I think you might just be her. To answer your question, as far as I know, no kind of imaging has been able to find adhesions; they must be diagnosed during surgery. The thing is, a lot of surgeons won’t tell you you have them, because they know the surgery they just performed will only give you more. I was very lucky that the adhesions were mentioned to me. The first time was by a regular ob/gyn when I got the first cyst. He called in a general surgeon to help and they took down as many as they dared to at the time. For a small town, they guy was am excellent ob/gyn and surgeon. Adhesions were also mentioned by the fertility specialist when I moved to a bigger city. He told me they were there, that the cysts weren’t ovarian, but free-floating amongst the adhesions. He said that by that point (both times) the risk was too great for him to be able to take any down. However, not one of those two surgeons told me that the adhesions were what was causing my pain. I figured it out when the last cyst was removed and I continued to hurt, that and I never did understand why he would say that the risk was too great to remove them. It just didn’t add up to me. At that time I thought I was the only person in the world that had them, but I was at college and my investigative mind took over. So I started looking on the internet for answers, and I found them. I also found the best doctor I’ve ever had. An ob/gyn who specializes in pelvic pain…in my city…perfect! Once I got in to see him (I’m actually working on a blog with this exact story…so keep in touch) he validated what I had been thinking…the adhesions were the cause of every strange pain I had, and of course he believed me that I was hurting. It was so nice to have someone believe me for once. I still see that doctor every 6 weeks. He his worth gold to me. If you ever want to ask me a question that you don’t want to share with the world, I would be more than happy to have you email me. It’s joynpain2blog@gmail.com. I can also get you in touch with a couple more people with adhesions. Most of them haven’t been writing much lately, but one has and we also keep in touch every day (as pain allows) by email. She has become a very good friend of mine. So, welcome very much to my blog. I write as pain allows, but I usually don’t go more than three days without putting something on here, so keep reading and like I said, feel free to send me an email if you have any more questions or even if you just want to vent your troubles. I’ll listen. 🙂

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        • I just went back over the comments sent from the other blogger and I don’t think you’re her either. Anyway, offer still stands as I said before. Anytime you need to talk, I’m here…all day…in bed…hahahaha…see I still have my sense of humor too, a little dry sometimes, but it’s there. 🙂

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