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Here I am on the couch in my latest creation and with Miss Blue Belle. I'm recovering from severe spasms. I have a cool Peace sign tied t-shirt and then this Peace Sign head wrap!
Well I will start with Tuesday: I did go to see a Psychiatrist on Tuesday morning; mostly just to make sure that my head is clear and that all of my thoughts are normal for someone who is going through what I am with this disease. I feel that my head, heart, and soul must be in place in order to be strong enough to fight this horrible disease! It's just that my emotions have been running quite high lately.
Well I will start with Tuesday: I did go to see a Psychiatrist on Tuesday morning; mostly just to make sure that my head is clear and that all of my thoughts are normal for someone who is going through what I am with this disease. I feel that my head, heart, and soul must be in place in order to be strong enough to fight this horrible disease! It's just that my emotions have been running quite high lately.
I have been crying quite a bit lately; mostly out of the fear of dying with this disease. I don't know why Death is so scary for me.? I'm not even close to being ready for that! I don't imagine that there are too many of us who are. It's supposed to be just another journey in life; but I don't feel I am ready for that yet! I'm way too young! I don't even understand why so many families are killing themselves over silly bills and money? How could money possibly be worth more than any family? It breaks my heart!(
I have to say honestly that feeling of dying is the absolute worst. I even cried to the point of having an anxiety attack when my husband reminded me that I needed a will. I cried even harder than ever when he suggested that he needed a will for himself in order to protect me. I honestly don't even want to think about loosing him because just the thought of it; rips my heart and makes me cry like a baby every single time. If I ever want to have an anxiety attack; just think that way! It's a hard denial thing to even think about to loose the love of my life.
I can't imagine what so many women and men have to go through in loosing a loved one like that and how hard it must be to pick up the peaces and to move on with your life. It's just one of the things I try not to think about and it scares the living crap out of me. I don't think I could do it. Loosing any family member, but for me; it's my other half. I love him more than I love myself! I do love myself; don't get me wrong; but I would happily take a bullet for him if it ever had to come to that. Ideally, if it were to come to the end of our lives; I would want to die a second before he does just so that I wouldn't have to live a second with out him. These are just a few of the things that we talked about. So the answer was "No" I don't wish to kill myself and "No" I don't wish to kill anybody. Those are kind of the obvious questions many health professionals have to find out.
I felt my meeting went well with the Psychiatrist as she reminded me that my husband and I are a very impressive power couple and the love that we have for one another is very rare. I had to tell her how impressed I was at how much my love took care of me. I even lost it and cried as I was telling her this and she then asked me why I was crying and I told her; because I love him so much and it deeply touches me; everything that he does for me; it's just so sweet!) I even told her how much he makes me laugh and how so many terrible things that I am facing are not so terrible as long as I am experiencing them with him.
I think it must have been impressive to her that our love for one another has gotten us this far. She did tell me that my feelings are very normal and it was relieving to at least know that me crying and worrying is not me loosing my mind; it's just me being human. Of course I had Blue because of Blue Belle and her joyfulness; I don't have to take any Anti-Depressants. Its just not necessary. She makes me, my husband, and all those around me smile and that's undepressing enough!)
Now I still have problems sleeping at night and knowing that I don't have an addictive personality helped her in prescribing me 2 drugs that I can switch from in case one doesn't work as well. I did so in the past couple of years when Ativan didn't work, I would switch to the other drug. It's between Ativan and Klonopin. The way that these two drugs work for me in giving me a choice of the two to take when needed: The Ativan is less strong but is activated much faster in the case of severe anal spasms or an anxiety attack. For Klonopan, if I am feeling stressed or that the spasms will eventually come around it takes longer to take effect, but it the effect of the drug is longer lasting.
My system works better with changes; for example, one night that I am feeling restless, I might take an Ativan, another night, perhaps a joint combined with some Yoga, the next night a Benadryl, then perhaps nothing at all, then it might be a Klonopan, then nothing at all again. I have to switch things up or my body will become immune to it. That's exactly how it works. If I don't switch it up and just use any of these 2 days in a row for sleeping; then there is a good chance that I might be rolling around all night. These two drugs are normally extremely addictive for most; but I plan to only use when needed as I do all of my medications. My last prescriptions lasted a whole year; only taking what I needed. At times I do suffer from insomnia and it's mostly caused by worrying too much about the future, scared of dying, finances, job, family, friends; mostly stress. I will lie awake all night long tossing and turning, running to the bathroom, or to go downstairs to watch TV if it's bad enough.
HEALTH UPDATE:
My system seems to be improving some and I am able to tolerate eating other types of foods. I think I have been getting used to some of these symptoms. The worst of the symptoms are the anal spasms by far. Those suck ass quite literally for me; no pun intended. I have been dealing with them as muscle spasms and even taking an Ativan which basically calms my nerves and in a sense those anal spasms are also caused by nerves. They are so incredibly unpleasant and feel as if I have dry heaves in my ass! Am I an asshole? One time my oncologist prescribed Ativan to me and on the bottle itself; it said "take as needed for Anal Spasms". That would be an embarrassing bottle to have to explain but it doesn't bother me at all!)
I sometimes ask God and I know that sounds bad; but why the hell do I have to have these Ass Hole problems? What the hell? Does God think that I'm some sort of an Asshole? Why can't real assholes have these problems? This world would be such a great place to be if all the wrongs of the world were corrected in that manner. When someone is an asshole; they could just go through what I go through in a day or how ever long it takes for them to realize that they are being assholes in the first place! YES, let the real assholes of the world have these horrible painful anal spasms and the hemorrhoids, the diarrhea, burning asshole; the whole 9 yards deal!) That would be the coolest; I wouldn't be an Asshole to anyone if I had to go through all of that! Too bad I do anyway; just to relieve that pain with drugs for now!)
OK well the Ativan takes about 15 - 20 minutes to take effect but once it does; I am more comfortable and not really feeling any pains for the time being. Sometimes I will smoke a joint to get rid of the horrible heaviness that I will feel in my tummy which is also quite painful. It literally feels as if my intestines are about to head right to my asshole. That's pain worthy of getting rid of!) It's what makes its way down to my asshole. OH the things I am having to do to gain weight and to get rid of pain. One thing after another, but at least I am at home healing and there's no better place than being at home right now!)
I also have my honey at home and he has been threatening a romantic weekday (when the hotels are cheap) getaway. We really do need a little mini vacation after all this crap (no pun intended). I just need to be able to survive a few hours in the car with out having the urge to have to pull over. I can handle those 5 minute drives; those are rockin right now. I survived a whole 45 minutes of going out for Sushi last night! Oh that was good! Didn't eat much raw fish (just some tuna and salmon), some miso, and a few CA rolls.
One of my honey's responsibilities is to check my Nephostomy tube dressing each day. He takes these jobs very seriously and inspects closely. Yesterday he found the dressing was coming off and underneath it was wet. He was very concerned and was not liking that I was taking baths and quite possibly from accidently getting water up there. Not sure how as the bath was quite shallow each time. Just needed some butthole releif. With that, he drove to a medical supply store to get me my very own sitz bath butthole contraption for my burning butthole! Oh how I love him so!)
My back was so incredibly itchy and I really tried my best to resist when I wanted to scratch and oh how I wanted to scratch to my heart's content! It was hard to resist and of course it got wet and sticky. Hopefully it wasn't urine seeping out (ick). Do I piss people off too to have these pee pee problems too? What the hell? Just kidding.
The nurse came over and changed my dressing and even got me a new tube hangy thing (forgot what's it called) but it helps hold the tube in place in case I get it caught on something it doesn't completely rip the whole tube out of my kidney. She also took my vitals and will be over next week to change that dressing again. Hopefully I can get rid of this thing in just couple more weeks. Plan to stay possitive that this isn't going to be a permanent thing. Thanks to all who have been praying for me and sending me all kinds of healing thoughts. I am getting stronger each day and proudly weighed in this morning at 116lbs!)
I have to say honestly that feeling of dying is the absolute worst. I even cried to the point of having an anxiety attack when my husband reminded me that I needed a will. I cried even harder than ever when he suggested that he needed a will for himself in order to protect me. I honestly don't even want to think about loosing him because just the thought of it; rips my heart and makes me cry like a baby every single time. If I ever want to have an anxiety attack; just think that way! It's a hard denial thing to even think about to loose the love of my life.
I can't imagine what so many women and men have to go through in loosing a loved one like that and how hard it must be to pick up the peaces and to move on with your life. It's just one of the things I try not to think about and it scares the living crap out of me. I don't think I could do it. Loosing any family member, but for me; it's my other half. I love him more than I love myself! I do love myself; don't get me wrong; but I would happily take a bullet for him if it ever had to come to that. Ideally, if it were to come to the end of our lives; I would want to die a second before he does just so that I wouldn't have to live a second with out him. These are just a few of the things that we talked about. So the answer was "No" I don't wish to kill myself and "No" I don't wish to kill anybody. Those are kind of the obvious questions many health professionals have to find out.
I felt my meeting went well with the Psychiatrist as she reminded me that my husband and I are a very impressive power couple and the love that we have for one another is very rare. I had to tell her how impressed I was at how much my love took care of me. I even lost it and cried as I was telling her this and she then asked me why I was crying and I told her; because I love him so much and it deeply touches me; everything that he does for me; it's just so sweet!) I even told her how much he makes me laugh and how so many terrible things that I am facing are not so terrible as long as I am experiencing them with him.
I think it must have been impressive to her that our love for one another has gotten us this far. She did tell me that my feelings are very normal and it was relieving to at least know that me crying and worrying is not me loosing my mind; it's just me being human. Of course I had Blue because of Blue Belle and her joyfulness; I don't have to take any Anti-Depressants. Its just not necessary. She makes me, my husband, and all those around me smile and that's undepressing enough!)
Now I still have problems sleeping at night and knowing that I don't have an addictive personality helped her in prescribing me 2 drugs that I can switch from in case one doesn't work as well. I did so in the past couple of years when Ativan didn't work, I would switch to the other drug. It's between Ativan and Klonopin. The way that these two drugs work for me in giving me a choice of the two to take when needed: The Ativan is less strong but is activated much faster in the case of severe anal spasms or an anxiety attack. For Klonopan, if I am feeling stressed or that the spasms will eventually come around it takes longer to take effect, but it the effect of the drug is longer lasting.
My system works better with changes; for example, one night that I am feeling restless, I might take an Ativan, another night, perhaps a joint combined with some Yoga, the next night a Benadryl, then perhaps nothing at all, then it might be a Klonopan, then nothing at all again. I have to switch things up or my body will become immune to it. That's exactly how it works. If I don't switch it up and just use any of these 2 days in a row for sleeping; then there is a good chance that I might be rolling around all night. These two drugs are normally extremely addictive for most; but I plan to only use when needed as I do all of my medications. My last prescriptions lasted a whole year; only taking what I needed. At times I do suffer from insomnia and it's mostly caused by worrying too much about the future, scared of dying, finances, job, family, friends; mostly stress. I will lie awake all night long tossing and turning, running to the bathroom, or to go downstairs to watch TV if it's bad enough.
HEALTH UPDATE:
My system seems to be improving some and I am able to tolerate eating other types of foods. I think I have been getting used to some of these symptoms. The worst of the symptoms are the anal spasms by far. Those suck ass quite literally for me; no pun intended. I have been dealing with them as muscle spasms and even taking an Ativan which basically calms my nerves and in a sense those anal spasms are also caused by nerves. They are so incredibly unpleasant and feel as if I have dry heaves in my ass! Am I an asshole? One time my oncologist prescribed Ativan to me and on the bottle itself; it said "take as needed for Anal Spasms". That would be an embarrassing bottle to have to explain but it doesn't bother me at all!)
I sometimes ask God and I know that sounds bad; but why the hell do I have to have these Ass Hole problems? What the hell? Does God think that I'm some sort of an Asshole? Why can't real assholes have these problems? This world would be such a great place to be if all the wrongs of the world were corrected in that manner. When someone is an asshole; they could just go through what I go through in a day or how ever long it takes for them to realize that they are being assholes in the first place! YES, let the real assholes of the world have these horrible painful anal spasms and the hemorrhoids, the diarrhea, burning asshole; the whole 9 yards deal!) That would be the coolest; I wouldn't be an Asshole to anyone if I had to go through all of that! Too bad I do anyway; just to relieve that pain with drugs for now!)
OK well the Ativan takes about 15 - 20 minutes to take effect but once it does; I am more comfortable and not really feeling any pains for the time being. Sometimes I will smoke a joint to get rid of the horrible heaviness that I will feel in my tummy which is also quite painful. It literally feels as if my intestines are about to head right to my asshole. That's pain worthy of getting rid of!) It's what makes its way down to my asshole. OH the things I am having to do to gain weight and to get rid of pain. One thing after another, but at least I am at home healing and there's no better place than being at home right now!)
I also have my honey at home and he has been threatening a romantic weekday (when the hotels are cheap) getaway. We really do need a little mini vacation after all this crap (no pun intended). I just need to be able to survive a few hours in the car with out having the urge to have to pull over. I can handle those 5 minute drives; those are rockin right now. I survived a whole 45 minutes of going out for Sushi last night! Oh that was good! Didn't eat much raw fish (just some tuna and salmon), some miso, and a few CA rolls.
One of my honey's responsibilities is to check my Nephostomy tube dressing each day. He takes these jobs very seriously and inspects closely. Yesterday he found the dressing was coming off and underneath it was wet. He was very concerned and was not liking that I was taking baths and quite possibly from accidently getting water up there. Not sure how as the bath was quite shallow each time. Just needed some butthole releif. With that, he drove to a medical supply store to get me my very own sitz bath butthole contraption for my burning butthole! Oh how I love him so!)
My back was so incredibly itchy and I really tried my best to resist when I wanted to scratch and oh how I wanted to scratch to my heart's content! It was hard to resist and of course it got wet and sticky. Hopefully it wasn't urine seeping out (ick). Do I piss people off too to have these pee pee problems too? What the hell? Just kidding.The nurse came over and changed my dressing and even got me a new tube hangy thing (forgot what's it called) but it helps hold the tube in place in case I get it caught on something it doesn't completely rip the whole tube out of my kidney. She also took my vitals and will be over next week to change that dressing again. Hopefully I can get rid of this thing in just couple more weeks. Plan to stay possitive that this isn't going to be a permanent thing. Thanks to all who have been praying for me and sending me all kinds of healing thoughts. I am getting stronger each day and proudly weighed in this morning at 116lbs!)
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6 comments:
((((CJ))))
I'm glad that you went to the psychiatrist to ease your mind. The fear of the unknown can be so overwhelming. Just remind yourself that you are still kicking (but not high enough to pull out your tube!) :)
Woo hoo!! You are gaining weight!! Keep it up!
Hang in there CJ. You have such loving people around you, and such a good attitude and awareness of yourself - not to mention a great fashion sense!
Sending all kinds of positive and healing energy!
yay, gaining weight has got to be a good sign! Eat, eat, eat!
I cried my eyes out when we made a will too. I was quite rude to the poor woman who helped us do it, not her fault, I was just so upset. It made me think about me dying or Aj dying [worse!], which I don't usually do - but it's normal I'm sure. At least it's done now and I don't think about it any more. In fact I am just trying to remember where it is!? ;o)
I was interested and surprised to find out that a lot of the side effects [very gloomy thoughts, insomnia, hot flashes etc] which I thought were after effects of having had cancer and chemo, are actually normal effects of the menopause! No wonder our minds run wild! Cancer’s bad enough, menopause on top of it SUCKS!
You’re doing amazingly, I can’t imagine the pain you’re in or the thoughts you’re having, but you are so chirpy and it’s remarkable you can share your darker moments as well as your brighter ones with us all. Thanks for that – a lot of the things you are going through are awful, but you manage them somehow. Which makes it less scary for others. For me, the scariest thing is the thing I don’t understand.
Love the peace outfit! :o)
As a fellow late stage ovarian cancer fighter, I can assure you, your feelings of fear about death are something we all deal with. I think when you have to face your own mortality, and so young too, it's inevitable. I guess the trick is trying not to get consumed with it...been there, done that!
Your attitude and humor throughout all the crap you've been dealt is inspiring...oh, and I have had the pleasure of having pee come out my back where my nephrostomy tube is - it can happen and it's not fun! Try to avoid a tube change at all costs ;) Hopefully you'll be rid of that thing for good very soon...
Take care...
Becky
Hi,
I`m new here,and this is the first post i`m reading.I must say that i can`t even imagine what your pain is like,but i know that it must be quite frustrating going through something like that.
Let me tell you i admire your positive attitude,and hope that by the end of our chat today,i can help even in somewhat small measure to bring a greater peace to your mind.
First let me say this to you and all other readers,We don`t have to fear death.
I know you`re probably saying yea! you can say that because you`re healthy and looking forward to a long life. I don`t know that!
My mother died 4 yrs.ago after many operations for cancer of the bladder, it was a long process and at times it just broke my heart to see the pain she went through.
I myself have had my brush with it having done two minor ops.for cin2,and even as i write i need to go get my status checked.So you see i`m not ignorant as to what the whole process entails.
The reason i said that we dont have to fear death is because it is the way for all of us. Once you`re born then death is sure.
All of us would like to live a long healthy life,and die peacefully at a ripe old age. Unfortunately for some of us it is not so,as many young people today go in tragic circumstances.
Others suffer through long illness`s like you. One thing is certain though,is that we can find peace and joy before we go.
You speak of the love you and your husband share and that the hardest thing for you to face is the thought of leaving him.You would like to leave one second before so you wouldn`t have to face life without him.
My dear i`m here to tell you that you and your husband can be together for ever through time and all eternity, Yes in the next life.
The person that has caused us to be here on Earth has promised this,what man with the proper authority has bound on earth,is also bound in heaven.
If you don`t get sealed to your husband now while you can,in the next life he wont be your husband.
Maybe you are wondering if i have lost my mind and i`m the one who need a shrink:-)
No it`s true,The Gospel of Jesus Christ has been restored to the earth,and with it all the truth`s that we need to know,that if we practice them,we can return to live with our Heavenly Father again
Start here.
http://www.mormon.org/
http://www.lds.org/
I hope you`ll take a look,and i pray Heavenly Father will grant you continued strength,to endure all that you go through,
And remember,Faith is:To believe in things,That are not seen,But known to be true.
Love morass5
I'm sorry to hear that you're having so much trouble, but I am glad to hear you are gaining weight...that's awesome!
Hopefully, those troubles will go away and you start feeling better soon!
Also, I nominated your blog for an award...here's the linkTake care, hun.
Damn girl~ now your making me cry!!!~ ((((( J. )))))
Fuck man, I wish I had the power to make you all better! I do say prayers for you.. prayers work I tell you!~ Just believe. try not to worry your pretty lil head K?
you have a great attitude. Just tell God, to heal that damn Cancer, Give it to God - your ready to heal now..your done with cancer, Cancer be gone now!
so much LOVE< HEALING> & PRAYERS for you
xxxxxxxx~
me.
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