So, very recently I finally found a doctor to perform a surgery that I have been waiting around 8 years for. Before we get into the whole complicated story, you should know exactly what I'm talking about.
Endometriosis is essentially the menstrual cycle growing upwards, starting on the upper part of the uterus, and constantly bleeding. It generally grows up and attaches, and begins growing on the bladder, colon, pretty much anything it can touch. It is CONSTANTLY bleeding. Hurts 24 hours a day, 7 days a week. There's no such a thing as a break from it. It feels like a combination of menstrual cramps, someone stabbing you in the uterus, and extremely hard pressure. Some medicines help to dull it, but it, but it ALWAYS hurts.
Backing up-- 8 years ago I was officially diagnosed with Endometriosis. I'd been symptomatic for a couple years prior to that, but a friend noticed I had pain when I did certain things, and said "hey, that's not normal, you should see a doctor".
The initial appointment was just the beginning of a very long list of appointments. Referral after referral, a list long enough to wallpaper a small room. First we did blood work, then ultrasounds. Little known fact, ultrasounds can be performed internally, and at least in my case, they DON'T warn you it will be. It leaves a burning sensation when you pee, for days afterwards. Another little known fact, again, in my opinion, ultrasounds are mostly a waste of time, except for pregnancy and gall bladders.
Then we did the scan I call the donut scan. Because I've had so many tests run that sometimes I have to label them in my head by what they look like. Worth mentioning is that far more people than I'm comfortable with have seen my private areas, because nothing is off limits. So, they make you strip down to one of those very fashionable gowns that cover next to nothing, then they injected me with a dye solution, which made me feel very weird. Again, this test showed nothing.
On to the bladder test. They make you pee until you've gotten your bladder as empty as you possibly can, which is not completely empty, because the human bladder is never totally empty. Next, they use an apparatus that looks like a very small shower head, with a camera on the end, and shove it way up into your bladder. That HURTS. Which comes with the warning, "this may be a bit uncomfortable". A bit uncomfortable, huh? Yeah right. It hurt to pee for DAYS after that one. The internal ultrasound hurt less.
There were 4 or 5 other tests, but in my head they all sort of swim together after so many years.
Next was the laporoscopy. I may have spelled that wrong. I'm never quite sure on that one. At least I got to sleep through that one. Then they FINALLY found the Endometriosis, at which point they burned off the diseased tissue, which the doctor said had been building for years. I even got printed photos of my ovaries, and the actual diseased tissue, which I still have somewhere.
My ob/gyn doctor recommended hormone therapy to try to manage it. So, we started a years' worth of various birth control options. At one point they put me on a combination of medicines that mimicked menopause. That was AWFUL. Not a single one of those options worked. Pain meds remained a constant necessity.
I spent that year bracing myself for the inevitable conclusion, that I was going to need a hysterectomy. I'd read everything I could find on the subject, and I knew that was the last resort. At this point I had still been hoping for the chance to have one more baby, so knowing that the decision to try for that was being made for me, was very painful. I knew I wasn't ready then, so it just wasn't going to happen. So I let that dream go.
After the year of Hormone Therapy Hell, I went in for the appointment that I assumed to be the one to set up the hysterectomy details. My doctor sits me down, and informs me that she's not comfortable doing the surgery. She's not convinced that the disease living and thriving on my uterus and ovaries and causing my pain, will be eradicated by removing all of those organs. She then tells me that some people just have to accept that they will have chronic pain for life, and referred me back to my primary doctor for pain medicine.
My doctor (whom has since retired, he was AMAZING), wrote the prescriptions for pain medicines. We tried everything. Percocet, Vicodin, OxyContin, Tramadol. I found that it was impossible to go to work and function on anything but Tramadol. Also, worthy of note- narcotics do not in any way make the pain "go away". They dull it some, but mostly you just don't care quite so much that it hurts, for 4-6 hours. Then it builds right back up again.
Tramadol ultimately left me fatigued at the end of the day, but it was the most successful at pain management. a couple years later my doctor retired, and I had to pick a new one. He said he would keep writing the prescriptions, but he'd like me to get a second opinion on the surgery. So, I go to see a new ob/gyn. This doctor sent me for another test. I honestly cannot remember what test it even was. But they then found Adenomyosis. It's the same disease, it just grows inside instead of out. This doctor recommended a hysterectomy, but he was not a surgeon, and sent me back to the same doctor that had refused surgery in the first place. She again, flat out refused the surgery. She offered another years' worth of hormone therapy. Why the hell would I agree to that?!
So, my doctor sent me to a chronic pain management specialist. We kept me on the Tramadol, for about a year, I think, give or take. But, I am on mental health medicines, and we decided to switch to Gabapentin. I have now been on that for about 2 and a half years or so.
About 2 months ago I moved north of the cities, and finally have access to doctors that actually listen when you talk. About 2 weeks after I got here my fiancée's mother insisted one day that it was time to go to the emergency room, because I was in so much pain that I had given in and just burst into tears. She brought me in, and they did an internal ultrasound to rule out the really scary stuff. Although, looking back on it, had they found something, I may not have a uterus or ovaries right now. They gave me a referral to the best ob/gyn doctor I have ever seen. She's kind, efficient, and above all, ready, willing, and able to do my surgery. I have one scheduled for October 12th, which we've decided to keep scheduled until the last possible minute.
I'm working with the hospital referral specialist to get them the massive stack of papers that is my medical records, which my ob doctor will be taking back to the medical company to plead my case one more time with, but she warned me not to expect much. I'm calling the hospital to ask how much money they require as a down payment, in order to do the surgery, and to also ask about a grant we heard about. Also, as a last grasp at hope, my fiancée has set up a Gofundme account.
Thank you, for taking the time to read my story. I know it was long, but 8 years' worth of history can't be summed up much shorter. I hope you'll take the time to share it. Not just because I need the help, but because I am one of so many countless girls suffering a disease, that far too few people know anything about.
I'm going back behind My Side of the Looking Glass now. Right now it's the best place for me.
Until next time-
Chandra
Tuesday, October 4, 2016
Friday, July 29, 2016
Not A Pile of Bullshit
I was going to talk about babies today. I've had them on my mind a lot lately. Babies are so perfect, in every possible way. They smell like the heavens, they're soft like the most precious of silk, and the cuddles you get during their many naps are absolutely amazing.
But then a little bit ago, I made the mistake of asking someone who is supposed to be a trusted friend, his opinion on our upcoming election. Just a simple question, really. He is someone who has guided me through some very messy and unpleasant twists in my life journey. He is smart, thorough, and generally patient. He is also a fellow member of the mentally ill masses, as I am I. But that does not give anyone a free pass to just be a total jerk. Not even a tiny little bit.
Mental illness has been in the limelight a whole lot lately. Yes, it causes people to have minds they feel prisoned within, emotions they cannot control, and require medication and therapy, for life, sometimes. But it's also something that is FULLY manageable.
Mental illness is horrible. My list of diagnoses is daunting, to say the least. I go to therapy, take my medicines, and use every coping technique I've learned to utilize. I'm honest with my fiancé when I'm feeling out of sorts, I back away from situations I know are over my head, and I flat out avoid anything that I know could possibly trigger something that would be humiliating or demeaning.
There are many forms, types, and variations of mental illnesses. Mine are the result of different twists in my life journey. There are is a very different type, that some people are born with. It's called the Autistic spectrum, or at least the last I read about it, that's what it was being referred to. It's a variety of ways that the mind alters the way people think, react to social situations, and treat other people. Childhood can be extra rough, being that it is the most informative time, loaded with developmental stages. There is no medication for any of the types on that spectrum. Therapy is the only outlet for learning to manage it. The type I am most familiar with, and the one that has prompted my rant, is called Aspberger's. I have known several aspy (common abbreviation) people. It's also fairly common that aspy people that other mental illnesses, which can in fact be medicated, and they can choose to go to therapy.
Even if you're on the Aspy spectrum, and managing other various mental illnesses, if you're able to maintain a marriage, hold down a well paying job, and buy a house, chances are you're able to choose to manage your illnesses without treating people like dirt. If you're not able to talk without being a meanface, you just say it, and whatever it is can wait. I do it all the time.. Sometimes you just tune out your phone altogether. I don't do it on purpose, but I definitely do it. I feel that's the mature, responsible way to handle it. That's almost funny, coming from me, "mature". But my Mother did teach me manners, and I'm a firm believer in using them. So, if I'm having a rough day, I use a bit of caution, and don't drag others into my dark and twisty place. THAT is what medication is for.
SO, a little while ago, I texted someone that I considered to be one of my most trusted friends. We can go months without speaking, but if he needs me, I'm there. I know I'm one of the few friends he has that can understand his dark place. But he also knows that he shouldn't engage if he's unable to be kind. I needed some advice about the election, because frankly, I don't understand most of what is going on. The more I read, the less I get. I know mainstream media is a pile of shit, so I do know enough not to buy into any of that. But what I don't know is how to absorb what I read from pretty much any source. I've been trying to understand, bit by bit, who stands for what, and why. This "friend" just not only shut me down, he hurt my feelings and demeaned my life in the process. He came right out and said I was "so caught up I my own bullshit" that I didn't take the time to do my own research.
NEWSFLASH-- I don't have any "bullshit" to be caught up in. My life is actually pretty goddamn groovy. I'm blessed with more love than any one person even really has a right to wish for. I have 2 grown children that have become loving, compassionate, intelligent people. We may not always see eye-to-eye, but I raised them to absolutely always think for themselves, and stand firmly for what they believe in. I have a tiny family, but we stick together, no matter what. I can call my sisters with a flat tire and having run out of gas at 3 in the morning and they'll figure out a way to help me. At no point, on any given day, do I feel alone in this world. So, no, I don't have any bullshit to be wrapped up in.
I am absolutely absorbed in my own little world. I deserve to be! I think that everyone, at any point in their life that they have achieved inner peace, harmony, and love, should focus solely on nurturing that. I have goals, strive to better myself, even if in tiny increments, and maintain relationships with all the people that I love. I do not believe that in any way, that equals being wrapped up in my own bullshit.
So, I'll continue to ask people I trust for their advice. I'll try to figure out who is the least horrible choice to take their turn running this country. And, hopefully, in the process, I won't run into anyone else that feels the need to trash my life and make feel stupid. I think the sad/mads have just about run their course. Be kind to each other, be patient with the friends that are confused. Above all, as I've said before, remove toxic people. Nobody should have the power to give such horrible sad/mads.
Hopefully the next time you visit My Side of the Looking Glass we'll be talking about something wonderful like babies. Or warm chocolate chip cookies.
-Chandra:)
But then a little bit ago, I made the mistake of asking someone who is supposed to be a trusted friend, his opinion on our upcoming election. Just a simple question, really. He is someone who has guided me through some very messy and unpleasant twists in my life journey. He is smart, thorough, and generally patient. He is also a fellow member of the mentally ill masses, as I am I. But that does not give anyone a free pass to just be a total jerk. Not even a tiny little bit.
Mental illness has been in the limelight a whole lot lately. Yes, it causes people to have minds they feel prisoned within, emotions they cannot control, and require medication and therapy, for life, sometimes. But it's also something that is FULLY manageable.
Mental illness is horrible. My list of diagnoses is daunting, to say the least. I go to therapy, take my medicines, and use every coping technique I've learned to utilize. I'm honest with my fiancé when I'm feeling out of sorts, I back away from situations I know are over my head, and I flat out avoid anything that I know could possibly trigger something that would be humiliating or demeaning.
There are many forms, types, and variations of mental illnesses. Mine are the result of different twists in my life journey. There are is a very different type, that some people are born with. It's called the Autistic spectrum, or at least the last I read about it, that's what it was being referred to. It's a variety of ways that the mind alters the way people think, react to social situations, and treat other people. Childhood can be extra rough, being that it is the most informative time, loaded with developmental stages. There is no medication for any of the types on that spectrum. Therapy is the only outlet for learning to manage it. The type I am most familiar with, and the one that has prompted my rant, is called Aspberger's. I have known several aspy (common abbreviation) people. It's also fairly common that aspy people that other mental illnesses, which can in fact be medicated, and they can choose to go to therapy.
Even if you're on the Aspy spectrum, and managing other various mental illnesses, if you're able to maintain a marriage, hold down a well paying job, and buy a house, chances are you're able to choose to manage your illnesses without treating people like dirt. If you're not able to talk without being a meanface, you just say it, and whatever it is can wait. I do it all the time.. Sometimes you just tune out your phone altogether. I don't do it on purpose, but I definitely do it. I feel that's the mature, responsible way to handle it. That's almost funny, coming from me, "mature". But my Mother did teach me manners, and I'm a firm believer in using them. So, if I'm having a rough day, I use a bit of caution, and don't drag others into my dark and twisty place. THAT is what medication is for.
SO, a little while ago, I texted someone that I considered to be one of my most trusted friends. We can go months without speaking, but if he needs me, I'm there. I know I'm one of the few friends he has that can understand his dark place. But he also knows that he shouldn't engage if he's unable to be kind. I needed some advice about the election, because frankly, I don't understand most of what is going on. The more I read, the less I get. I know mainstream media is a pile of shit, so I do know enough not to buy into any of that. But what I don't know is how to absorb what I read from pretty much any source. I've been trying to understand, bit by bit, who stands for what, and why. This "friend" just not only shut me down, he hurt my feelings and demeaned my life in the process. He came right out and said I was "so caught up I my own bullshit" that I didn't take the time to do my own research.
NEWSFLASH-- I don't have any "bullshit" to be caught up in. My life is actually pretty goddamn groovy. I'm blessed with more love than any one person even really has a right to wish for. I have 2 grown children that have become loving, compassionate, intelligent people. We may not always see eye-to-eye, but I raised them to absolutely always think for themselves, and stand firmly for what they believe in. I have a tiny family, but we stick together, no matter what. I can call my sisters with a flat tire and having run out of gas at 3 in the morning and they'll figure out a way to help me. At no point, on any given day, do I feel alone in this world. So, no, I don't have any bullshit to be wrapped up in.
I am absolutely absorbed in my own little world. I deserve to be! I think that everyone, at any point in their life that they have achieved inner peace, harmony, and love, should focus solely on nurturing that. I have goals, strive to better myself, even if in tiny increments, and maintain relationships with all the people that I love. I do not believe that in any way, that equals being wrapped up in my own bullshit.
So, I'll continue to ask people I trust for their advice. I'll try to figure out who is the least horrible choice to take their turn running this country. And, hopefully, in the process, I won't run into anyone else that feels the need to trash my life and make feel stupid. I think the sad/mads have just about run their course. Be kind to each other, be patient with the friends that are confused. Above all, as I've said before, remove toxic people. Nobody should have the power to give such horrible sad/mads.
Hopefully the next time you visit My Side of the Looking Glass we'll be talking about something wonderful like babies. Or warm chocolate chip cookies.
-Chandra:)
Thursday, July 28, 2016
Choosing Your Battles
Salutations. How've you been? I hope all is well out there in Lalaland. Things are okay on My Side of the Looking Glass. I've got a fiancé that treats me like I'm priceless, I'm more or less healthy, and sufficiently medicated. I've got my share of woes, but they will pass, they always do.
I was skimming my Facebook last night around this time. I got REALLY annoyed. First with some of the ridiculous things that I read, then with myself for not doing anything about it. What makes people feel they need to overhaul their entire personality, for someone they themselves have admitted is "probably not the one"? Nevermind the borderline illegal, totally tacky, super low-class behavior. Yeah, I just said that. I'd say it to her face too. Unfortunately all 4 brain cells probably wouldn't understand.
Thus began the need to delete, delete, delete. No big, really. We all need to do it sometimes. It just made me sad to think about just drastically people can change, when it's so fucking superficial. Humans need to change, to evolve, to learn and better themselves. All the time. But, when you're closer to 40 than 30 and you're still doing it for the wrong reasons, grow up. And that's coming from maybe the single least mature, unbalanced, and clueless 39 year old on the planet. Okay, maybe not the planet. There's probably a crackhead somewhere less balanced than I am. But I am articulate, intelligent, and let's face it, pretty darn witty. Clever, even.
I am SO grateful for the friendships that endure the test of time, and life. I get all sappy all the time, lost in my head thinking about how fortunate I am to have the friends that I do. My circle is small, but it's unbelievably strong. When my Mom died they were present and accounted for. When I've had health scares they check on me. No matter how ludicrous my decisions appear to be, they've got my back. I recently had the second most painful thing in my life happen to me, and my friends were right there, doing their best to try to find words to comfort me.
So, if they see someone that deserves that type of friendship, I must be doing something right. It's especially comforting when you think about all the people that so willingly let you walk out of their life. Or in one particularly painful situation, tell you that you are dead to them. But that's a post for another day.
I think the point is, examine what you're allowing into your life. If you have friends that are willing to make the time, you must be doing something right. If you find yourself questioning why you feel let down, or flabbergasted, or just plain sad by the way someone has treated you- that's because YOU allowed them to do it. They're called toxic people, at least in how they relate to you. Why would you put up with that? You can't be open to allowing in new, positive things, if you're caught up dealing with negativity, which tends to stem from the influences you allow into your life. I'm just as guilty of it, as anyone else. I wouldn't have been skimming Facebook getting annoyed last night, if I'd taken personal responsibility for removing people.
One last thing; this political situation is making us all a little nutso. Try to remember not to allow the garbage that the media is spewing, to come between you and the people you love. I have a feeling this will get much worse before it gets better. Your friends will still be around after that inauguration, regardless of whom takes to the oath, if they are truly your friends. THAT, not the POLITICS, is worth fighting for. Educate yourself and vote how you feel is best for you. It's nobody's business but yours. Or, for that matter, don't vote at all. Who am I to tell you what to do? Either way, it's you living in your skin, screw the rest. Just remember the people in your life don't love you for your politics. If they do, they're the wrong people. Simple as that.
Now I must bid you farewell. It seems even my miraculous allergy pills cannot combat the damage that sleeping with my sister's cat all day has done to my eyes. I can barely see a damn thing.
Thank you for visiting My Side of the Looking Glass! Let's do this more often, shall we?
--Chandra :)
I was skimming my Facebook last night around this time. I got REALLY annoyed. First with some of the ridiculous things that I read, then with myself for not doing anything about it. What makes people feel they need to overhaul their entire personality, for someone they themselves have admitted is "probably not the one"? Nevermind the borderline illegal, totally tacky, super low-class behavior. Yeah, I just said that. I'd say it to her face too. Unfortunately all 4 brain cells probably wouldn't understand.
Thus began the need to delete, delete, delete. No big, really. We all need to do it sometimes. It just made me sad to think about just drastically people can change, when it's so fucking superficial. Humans need to change, to evolve, to learn and better themselves. All the time. But, when you're closer to 40 than 30 and you're still doing it for the wrong reasons, grow up. And that's coming from maybe the single least mature, unbalanced, and clueless 39 year old on the planet. Okay, maybe not the planet. There's probably a crackhead somewhere less balanced than I am. But I am articulate, intelligent, and let's face it, pretty darn witty. Clever, even.
I am SO grateful for the friendships that endure the test of time, and life. I get all sappy all the time, lost in my head thinking about how fortunate I am to have the friends that I do. My circle is small, but it's unbelievably strong. When my Mom died they were present and accounted for. When I've had health scares they check on me. No matter how ludicrous my decisions appear to be, they've got my back. I recently had the second most painful thing in my life happen to me, and my friends were right there, doing their best to try to find words to comfort me.
So, if they see someone that deserves that type of friendship, I must be doing something right. It's especially comforting when you think about all the people that so willingly let you walk out of their life. Or in one particularly painful situation, tell you that you are dead to them. But that's a post for another day.
I think the point is, examine what you're allowing into your life. If you have friends that are willing to make the time, you must be doing something right. If you find yourself questioning why you feel let down, or flabbergasted, or just plain sad by the way someone has treated you- that's because YOU allowed them to do it. They're called toxic people, at least in how they relate to you. Why would you put up with that? You can't be open to allowing in new, positive things, if you're caught up dealing with negativity, which tends to stem from the influences you allow into your life. I'm just as guilty of it, as anyone else. I wouldn't have been skimming Facebook getting annoyed last night, if I'd taken personal responsibility for removing people.
One last thing; this political situation is making us all a little nutso. Try to remember not to allow the garbage that the media is spewing, to come between you and the people you love. I have a feeling this will get much worse before it gets better. Your friends will still be around after that inauguration, regardless of whom takes to the oath, if they are truly your friends. THAT, not the POLITICS, is worth fighting for. Educate yourself and vote how you feel is best for you. It's nobody's business but yours. Or, for that matter, don't vote at all. Who am I to tell you what to do? Either way, it's you living in your skin, screw the rest. Just remember the people in your life don't love you for your politics. If they do, they're the wrong people. Simple as that.
Now I must bid you farewell. It seems even my miraculous allergy pills cannot combat the damage that sleeping with my sister's cat all day has done to my eyes. I can barely see a damn thing.
Thank you for visiting My Side of the Looking Glass! Let's do this more often, shall we?
--Chandra :)
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