Could I please donate it to science... now!
Here's my life at the moment: drugs, pain, drugs, tears and faking feeling good.
When they removed the tumor on my girlie organs in April they said that it looked like I was developing endometriosis. My Aunt has it and had to have a radical hysterectomy when she was in her early 20s so I had heard about it. I didn't really think much of it as I was still recovering from a 2.5kg cyst being removed.
However, nearly six months on and my world is not improving. I have not stopped bleeding since the operation; sometimes just spotting, other times I think I'm at a murder scene. I returned to the doctor two months ago after being feed up with the 'wait and see' I'd been given at the time and begged for her to make it stop. She prescribed the pill. I rushed home and started taking the pill. Joy! Two days into taking the pill and my period finally stopped. Three days after that it returned - pissed off and trying to prove a point.
I returned to the doctor after taking the course of medication as she told me to and informed her it was worse. The pain is hideous. I've never had trouble with pain until now. Even carrying that massive tumor - no pain. Now I want to throw up from the pain. I catch myself making uncontrollable moaning noises when the wave of pain gets too much.
After the operation I had no pain. I didn't take any pain relief despite them prescribing panadine forte. I took my first panadine forte a week ago. It did nothing. I cried.
The doctor informed me that she was going to have to put me on a stricter regime of medication. Apparently there's an industrial strength pill that she believes will get things under control. I've been taking that pill for a week and it's just made things worse.
She's also had to prescribe progesterone to try and help. It's not doing anything either. My blood pressure reached a new high at 200/180 so she's increased my heart medication. Apparently as I'm losing so much blood my heart has to work harder and therefore my blood pressure will be elevated.
As for the pain she's prescribed six nurofen a day. Does it work? Not a chance.
My iron levels are dangerously low because of the amount of blood I'm losing so I've now had to start taking an iron supplement, that if I take for too long can give me iron poisoning and kill me. So more blood tests to monitor the levels. Ironic that I have to give a sample of the one thing I'm in need of the most these days - blood.
I wake in the morning and my hands are red raw and pain filled. I can't get comfortable anywhere because my joints are filled with pain. I can't sleep properly because of the joint pain combined with the period pain. I just want to cry.
I haven't been to work in a week and I'm worried I'll lose my job. I haven't been able to tell HUBBY just how scared I am because he's only just starting to get over the scare of the surgery. I haven't been able to tell him just how scared I am that he's going to leave me for someone less high maintenance. Someone who can give him the children he wants. Someone that can lead a normal life. Someone that he doesn't have to watch helplessly.
I cried in my doctors surgery last week and begged for a hysterectomy. After four years of infertility treatment I am begging to have them take any chance of my own children away from me. Just for a chance at a normal life. That's how horrible I feel at the moment. The one thing I would like most in this world I will sacrifice for a day without pain or worrying about bleeding. Even if it meant my husband left me for someone who could give him children.
I'm tired of putting on a brave face. I'm tired of feeling like a liar because of the looks people give me when I say I'm unable to go to work. Just because I don't cry and scream and writhe in pain in front of you does not mean it's not happening. Just because you have no idea how you'd deal with something does not invalidate my response to the situation. I'm not going to wallow in front of you. I'm also not going to keep you around if I feel like your judging me because I don't respond to things in the way you think I should. I don't have time or the energy.
I feel like the only place where I can let all the pain, anger, fear and loathing out is in the shower. I take long showers at the moment. I'm sorry water levels - but it's my only escape. I can cry in there and no one sees. I can get angry at my body and say all the things that I wanted to say to it through out the day when I'm alone in the shower. I can beg with the LORD to make me better. I can savour ten minutes of feeling clean for a change, instead of hot, grimy and gross. I can sob and I can pull myself back together and get on and face the day and everyone else.
I escape into the internet because for the few moments I get of seeing new and exciting things I get to forget about the pain. It's like distraction therapy. Sometimes it doesn't work and I retreat to bed with a book. Sometimes the book doesn't work and I have my third shower for the day. Sometimes it's just the use of a mental teaser that makes me forget about the constant hum of pain. So just because you see me on the internet doesn't mean that the pain is not real or that my body is not torturing me. It means I'm trying to get some sort of life out of this mess. I'm reaching out and doing something to try and help me deal with this the best I can. So you can keep your judgment and use it on someone that really needs it.
I try not to talk about what's going on because I don't think people should have to hear the same thing everyday. I hurt. I'm tired. I'm upset. I'm in pain. I can't stop losing blood. I'm scared. People have their own problems - they don't need to hear mine. Maybe this is the wrong approach - maybe I should be ranting and raving about what's happening so they don't look at me like I'm a crackpot when I say I'm not going into work today. Maybe I should go in to gory details so that they'll stop judging me because I'd rather eat chocolate and get a few moments of pleasure in an otherwise crappy day then have the lentil salad. But that's not me. I don't want to be the black cloud in the corner. I'd rather suck some laughs from the moments that we're given and be there for other people. I desperately don't want to be the "sick" person. I want to be normal, but maybe it's time to accept that I'm living with a chronic disease and stop trying to sugar coat it for everyone because it makes it harder for them to understand when I hit the wall.
That's not me. I'm not going to be that person. I refuse to let this take that part of me. I would rather participate in what I can and withdraw when I need to. Sometimes that's going to mean a long period where I don't see friends, or when I do that I'll need to stay home and nap while they go out and dance the night away. So if it means that I lose some friends along the way because they don't understand what's going on, or they're too busy judging the world, then so be it. Better to know those that are free to just enjoy life and can relish the moments of good that we can have together.
I feel alone. For the first time I'm considering reaching out to a support group - finding other women that are going through this same or similar experience. A group of people that I can talk to about the crap things. In some ways I resist doing this because I think it amounts to admitting that I have the disease. That there is something wrong with me - it's just not a cold or flu that will pass and I'll return to my normal life. I'm still in denial. I'm refusing to accept it. I really don't want to be the 'sick' one.
The level of frustration that I feel at the moment is unbelievable. I just want to cry, yell, kick, scream - something. But I can't do any of that - what would it achieve? So I just plaster a smile on my face and get on with life the only way I can - my way.
When they removed the tumor on my girlie organs in April they said that it looked like I was developing endometriosis. My Aunt has it and had to have a radical hysterectomy when she was in her early 20s so I had heard about it. I didn't really think much of it as I was still recovering from a 2.5kg cyst being removed.
However, nearly six months on and my world is not improving. I have not stopped bleeding since the operation; sometimes just spotting, other times I think I'm at a murder scene. I returned to the doctor two months ago after being feed up with the 'wait and see' I'd been given at the time and begged for her to make it stop. She prescribed the pill. I rushed home and started taking the pill. Joy! Two days into taking the pill and my period finally stopped. Three days after that it returned - pissed off and trying to prove a point.
I returned to the doctor after taking the course of medication as she told me to and informed her it was worse. The pain is hideous. I've never had trouble with pain until now. Even carrying that massive tumor - no pain. Now I want to throw up from the pain. I catch myself making uncontrollable moaning noises when the wave of pain gets too much.
After the operation I had no pain. I didn't take any pain relief despite them prescribing panadine forte. I took my first panadine forte a week ago. It did nothing. I cried.
The doctor informed me that she was going to have to put me on a stricter regime of medication. Apparently there's an industrial strength pill that she believes will get things under control. I've been taking that pill for a week and it's just made things worse.
She's also had to prescribe progesterone to try and help. It's not doing anything either. My blood pressure reached a new high at 200/180 so she's increased my heart medication. Apparently as I'm losing so much blood my heart has to work harder and therefore my blood pressure will be elevated.
As for the pain she's prescribed six nurofen a day. Does it work? Not a chance.
My iron levels are dangerously low because of the amount of blood I'm losing so I've now had to start taking an iron supplement, that if I take for too long can give me iron poisoning and kill me. So more blood tests to monitor the levels. Ironic that I have to give a sample of the one thing I'm in need of the most these days - blood.
I wake in the morning and my hands are red raw and pain filled. I can't get comfortable anywhere because my joints are filled with pain. I can't sleep properly because of the joint pain combined with the period pain. I just want to cry.
I haven't been to work in a week and I'm worried I'll lose my job. I haven't been able to tell HUBBY just how scared I am because he's only just starting to get over the scare of the surgery. I haven't been able to tell him just how scared I am that he's going to leave me for someone less high maintenance. Someone who can give him the children he wants. Someone that can lead a normal life. Someone that he doesn't have to watch helplessly.
I cried in my doctors surgery last week and begged for a hysterectomy. After four years of infertility treatment I am begging to have them take any chance of my own children away from me. Just for a chance at a normal life. That's how horrible I feel at the moment. The one thing I would like most in this world I will sacrifice for a day without pain or worrying about bleeding. Even if it meant my husband left me for someone who could give him children.
I'm tired of putting on a brave face. I'm tired of feeling like a liar because of the looks people give me when I say I'm unable to go to work. Just because I don't cry and scream and writhe in pain in front of you does not mean it's not happening. Just because you have no idea how you'd deal with something does not invalidate my response to the situation. I'm not going to wallow in front of you. I'm also not going to keep you around if I feel like your judging me because I don't respond to things in the way you think I should. I don't have time or the energy.
I feel like the only place where I can let all the pain, anger, fear and loathing out is in the shower. I take long showers at the moment. I'm sorry water levels - but it's my only escape. I can cry in there and no one sees. I can get angry at my body and say all the things that I wanted to say to it through out the day when I'm alone in the shower. I can beg with the LORD to make me better. I can savour ten minutes of feeling clean for a change, instead of hot, grimy and gross. I can sob and I can pull myself back together and get on and face the day and everyone else.
I escape into the internet because for the few moments I get of seeing new and exciting things I get to forget about the pain. It's like distraction therapy. Sometimes it doesn't work and I retreat to bed with a book. Sometimes the book doesn't work and I have my third shower for the day. Sometimes it's just the use of a mental teaser that makes me forget about the constant hum of pain. So just because you see me on the internet doesn't mean that the pain is not real or that my body is not torturing me. It means I'm trying to get some sort of life out of this mess. I'm reaching out and doing something to try and help me deal with this the best I can. So you can keep your judgment and use it on someone that really needs it.
I try not to talk about what's going on because I don't think people should have to hear the same thing everyday. I hurt. I'm tired. I'm upset. I'm in pain. I can't stop losing blood. I'm scared. People have their own problems - they don't need to hear mine. Maybe this is the wrong approach - maybe I should be ranting and raving about what's happening so they don't look at me like I'm a crackpot when I say I'm not going into work today. Maybe I should go in to gory details so that they'll stop judging me because I'd rather eat chocolate and get a few moments of pleasure in an otherwise crappy day then have the lentil salad. But that's not me. I don't want to be the black cloud in the corner. I'd rather suck some laughs from the moments that we're given and be there for other people. I desperately don't want to be the "sick" person. I want to be normal, but maybe it's time to accept that I'm living with a chronic disease and stop trying to sugar coat it for everyone because it makes it harder for them to understand when I hit the wall.
That's not me. I'm not going to be that person. I refuse to let this take that part of me. I would rather participate in what I can and withdraw when I need to. Sometimes that's going to mean a long period where I don't see friends, or when I do that I'll need to stay home and nap while they go out and dance the night away. So if it means that I lose some friends along the way because they don't understand what's going on, or they're too busy judging the world, then so be it. Better to know those that are free to just enjoy life and can relish the moments of good that we can have together.
I feel alone. For the first time I'm considering reaching out to a support group - finding other women that are going through this same or similar experience. A group of people that I can talk to about the crap things. In some ways I resist doing this because I think it amounts to admitting that I have the disease. That there is something wrong with me - it's just not a cold or flu that will pass and I'll return to my normal life. I'm still in denial. I'm refusing to accept it. I really don't want to be the 'sick' one.
The level of frustration that I feel at the moment is unbelievable. I just want to cry, yell, kick, scream - something. But I can't do any of that - what would it achieve? So I just plaster a smile on my face and get on with life the only way I can - my way.