I'm still okay. Only hormones really seem to be hurting me, and it's not crippling. Of course, it's still warm out without major changes in the temperature.
Just thought I'd let the internet know that my mom has figured out what causes IC. You see, I'm in pain during the winter a lot because I don't "Get out enough." That makes a whole lot of sense since the pain keeps me inside-- oh wait..
Even if you're knowledgeable in whatever disease you have, know the cause, it's name, and treatments your family, friends, or perfect strangers will still assume they know more about the disease than you and offer unhelpful, and often, insulting advice.
Showing posts with label family. Show all posts
Showing posts with label family. Show all posts
Tuesday, August 28, 2012
Sunday, January 22, 2012
House etiquette should be excused or not taken so harshly on IC patients
Dear mother and world. When you have IC you will jump in and out of the tub to the toilet. This will leave water everywhere. As we are nervous about time spent out of the tub or heating pad we do a rush, bad job of wiping up the puddles. I do slide a towel on the way out, but yes I may miss places. So sorry to be an inconvenience. Perhaps you could shoot my bladder so we won't have to worry about this anymore? Be sure to do enough damage so they have to rip the nerves out too though.
Thursday, January 12, 2012
Second Day of School
I woke up when it was time to leave to had to rush. Thankfully no pain. No pain at all. Not until class was over and I had to do some walking to finalize some errands, then the spasms started. There was a big cold front last night, so I'm surprised I woke up feeling well.
I took my meds, finished my errands, got home and sat on a heating pad before letting my bladder empty itself then that's when the worst pain comes. Well, after going to the bathroom I'm tethered to the heating pad. Its bearable, but makes me not want to move. At all. I really think a wheel chair would be the best option for me for now.. but they are expensive, my insurance won't cover rent on one for a few months, and my mom thinks I'm being dramatic.
So that's my status update. There's housework that needs to be done and I will be screamed at for not doing them, but I'm not leaving this heating pad until I feel "normal" again.
I took my meds, finished my errands, got home and sat on a heating pad before letting my bladder empty itself then that's when the worst pain comes. Well, after going to the bathroom I'm tethered to the heating pad. Its bearable, but makes me not want to move. At all. I really think a wheel chair would be the best option for me for now.. but they are expensive, my insurance won't cover rent on one for a few months, and my mom thinks I'm being dramatic.
So that's my status update. There's housework that needs to be done and I will be screamed at for not doing them, but I'm not leaving this heating pad until I feel "normal" again.
Wednesday, December 28, 2011
Christmas has been delayed by a cancer called Leiomyosarcoma
My uncle had been diagnosed with Leiomyosarcoma in the lungs a few weeks ago. He had no job and lived very modestly in a self-built house out in the woods, so I'm positive he put testing off. And I can't blame him after my own experiences with Interstitial Cystitis. What if you get that crazy doctor that wants to stuff tubes and cameras up every orifice with no GA? Not to mention the cost.
He was at my grandmother's funeral. He had oxygen, but was talking and walking. He looked pale, but he seemed okay.
We couldn't get any information out of him or his wife because they just couldn't understand the doctors. They have no internet, no ability to research, and I'm sure they couldn't keep up with the jargon. It took two weeks for my mom to get the name of the cancer so I could start the research -- research which she was was extremely good, but not useful as he is now dying.
I woke up today with no one home. This isn't unusual. I needed to find my tax return papers to set up some things for this blog so I called her and that's when she told me the news that one of his lungs of collapsed and the doctors said it was too late to move him anywhere.
We were trying to get him to Houston since it has one of the best cancer treatment facilities in the U.S.
My mom and stepfather took off to Florida to see what is going on. We can't get any information from the family because they don't know. They just said the doctor said they "couldn't move him now." Not that he was dying, how severe it was, or even what stage its in. I know it can be surgically removed, but evidently at this point its likely too late. If we had known sooner then this would be no big deal.. but its a rare cancer, I'm sure he suspected nothing until the pain, and then he held it off until it got bad.
If it is end stage I will advocate for palliative care AT HIS HOUSE even if I have to scream at the family. There's no point for painful tests for someone at end stage cancer.
Yet as stated above we can't understand the family members because they can't understand the doctors. Originally I was planning on going to Florida with them (with pain meds, heating pads, and possibly an army tank to beat my IC down long enough for such a trip) so I could be there and be the patient advocate since I'm a "professional" patient. I had no idea it was this bad. He was WALKING a few weeks ago.
If he does pass, then I can at least be thankful that it was a very fast descent. If he survives this and it truly is the end then I'm contacting hospice services myself if I have to in order to get him back home and in comfort.
This was the "fun" uncle. The one you always loved. I didn't cry for my grandmother except at the funeral because we knew she was dying for a long time. But I'm crying now because my uncle is young and always took yearly trips to come see us. Our visits to his house were the funnest times of my life because he lived near one of the most beautiful beaches in Florida. We also had fun Sasquatch hunts and a fresh spring creek with crystal clear, ice cold, fresh water that we could actually drink straight from.
Our presents will remain under the tree until the family returns. I will fight 1. to have the cancer treated at only the best center in the U.S. or 2. Be sure to get him the best hospice care available and to insure he will not be in pain.
He worked at a chemical plant for a few years.. this isn't from smoking. If he does pass I know where I'm aiming my weapons next.
He was at my grandmother's funeral. He had oxygen, but was talking and walking. He looked pale, but he seemed okay.
We couldn't get any information out of him or his wife because they just couldn't understand the doctors. They have no internet, no ability to research, and I'm sure they couldn't keep up with the jargon. It took two weeks for my mom to get the name of the cancer so I could start the research -- research which she was was extremely good, but not useful as he is now dying.
I woke up today with no one home. This isn't unusual. I needed to find my tax return papers to set up some things for this blog so I called her and that's when she told me the news that one of his lungs of collapsed and the doctors said it was too late to move him anywhere.
We were trying to get him to Houston since it has one of the best cancer treatment facilities in the U.S.
My mom and stepfather took off to Florida to see what is going on. We can't get any information from the family because they don't know. They just said the doctor said they "couldn't move him now." Not that he was dying, how severe it was, or even what stage its in. I know it can be surgically removed, but evidently at this point its likely too late. If we had known sooner then this would be no big deal.. but its a rare cancer, I'm sure he suspected nothing until the pain, and then he held it off until it got bad.
If it is end stage I will advocate for palliative care AT HIS HOUSE even if I have to scream at the family. There's no point for painful tests for someone at end stage cancer.
Yet as stated above we can't understand the family members because they can't understand the doctors. Originally I was planning on going to Florida with them (with pain meds, heating pads, and possibly an army tank to beat my IC down long enough for such a trip) so I could be there and be the patient advocate since I'm a "professional" patient. I had no idea it was this bad. He was WALKING a few weeks ago.
If he does pass, then I can at least be thankful that it was a very fast descent. If he survives this and it truly is the end then I'm contacting hospice services myself if I have to in order to get him back home and in comfort.
This was the "fun" uncle. The one you always loved. I didn't cry for my grandmother except at the funeral because we knew she was dying for a long time. But I'm crying now because my uncle is young and always took yearly trips to come see us. Our visits to his house were the funnest times of my life because he lived near one of the most beautiful beaches in Florida. We also had fun Sasquatch hunts and a fresh spring creek with crystal clear, ice cold, fresh water that we could actually drink straight from.
Our presents will remain under the tree until the family returns. I will fight 1. to have the cancer treated at only the best center in the U.S. or 2. Be sure to get him the best hospice care available and to insure he will not be in pain.
He worked at a chemical plant for a few years.. this isn't from smoking. If he does pass I know where I'm aiming my weapons next.
Christmas
Christmas went pretty well. The weather stabled to cold and gave me some relief. I'm still worse off than I was in summer, but overall am doing better than last year. I only opened one present as stepfather does not return from offshore until tomorrow. Present was Riot Points from my boyfriend, which is online currency for a game I play.
If you have IC, you HAVE to have something to distract yourself with.. mine is raging at people on my team that only speak Spanish and die a lot. Plus I do generally have fun.
Skyrim is sitting under the tree.. I'll get that tomorrow.. Melee Kahjiit it is.
I cooked some good gumbo.
I'm very diet sensitive, of course. Only things that went it was oregano, fresh garlic cloves, basil, crab meat, and shrimp meat. My mom did buy the ingredients for it, but I split it half-and half with her as repayment. The meat was bought at a local stand, so no preservatives. The kicker? The woman running it has IC too. This is a small town I'm in. And I now know of two women with IC. Evidently hers is mild and only hurts if she drinks soda. If course, my mother compared me to her and asked why is she doing so much better than me.
Earlier we got in a fight again. I wouldn't say fight. I was just submissive. She complained how I never clean house and I'm always playing on "that damn computer."
Well. The computer is my only access to the outside world and.. I do a lot more research than reading... that aside, I do try to keep up with things, but in the mornings of winter I MUST have an hour's time to take pain meds, sit on a heating pad, and relax, hopefully with breakfast.. after that I may continue to hurt, or I may not. At which point I'll either tackle some house work or remain on the heating pad.
The main problem with my mom is that even when I do clean, it only brings more complaints. I do the dishes, why didn't I clean behind the toaster? (Because I don't think to move the toaster every day to see how nasty it is.. I can't even eat anything that comes out of it.)
Towels is the main argument. I do towels daily, but there's always a pile on the floor despite having stocks in the bathroom for use. This is because I must urinate in the tub with warm water spraying at the pelvis to control spasms. Since I'm on the pill that turns my urine blue, this leads to blue stains in the tub. She complains constantly about this as well. I do spray bleach in it about once every two days, but it's my only option. I tell her I'm sorry. Because of this I use a towel to dry off before leaving the bathroom. We don't have actual heating in the house, just electric heaters where we need them. This doesn't include the hall. It is very cold, and bad for spasms, so I often will leave my towel on the floor until I come back out for something else after being fully dried and re-warmed. She complains about this and doesn't understand why I leave towels on the floor.
Thing is, I just don't pick it up fast enough. When she leaves on vacation everything gets done, just as it does now, but everything must be done on her time and not on my bladder's time.
Its 7 A.M. now. I'm tired. I want to sleep. But my bladder controls my schedule. I must complete this water bottle or else I will awaken with burning from condensed urine in an already irritated bladder.
I would really like to see a therapist about all this. The pain, dealing with family who can't understand, and worries about my future. Sadly, this is a cache 22. I'm chronically ill with pain and am very hesitant to leave the house. The therapist is not at my house, and if I call in absent on the day of the appointment enough times they can drop me. Worst thing about IC is its unpredictable. Symptoms change every four hours for me, or in other words, every time I urinate. There's no such thing as web-therapists that I know of.. or at least, a therapist that'll meet me in person and maybe do e-mail or chat sessions with me on bad days. Do they do this? I don't know.
And yet again, this costs money.. the final thing my mom was complaining about. I live off financial aid from my school. I don't get paid until February. Right now my boyfriend is paying for most of everything. I can't reimburse my mom for what she spent on my medications. Per month, with good insurance, I'd say its about $50.. and I'm broke.
The way she words it is that I should be doing "something" for money. But who will hire a person that can only work maybe 4 to 6 hours a day on good days and be absent many days for winter? During the summer I could perhaps find a seasonal job.. but now I'm fairly useless in most ways. Only thing keeping me sane is my boyfriend who gets it.
Feeling like I'm being blamed for my illness, or lying about the pain, due to the words of close family members hurt a lot. ICers are 3-5 times more likely to commit suicide than healthy people. They say the main reason is from the pain, which I can see, but also definitely when there's little family support. Mother does support me, but she makes sure I know she thinks I'm playing my pain up more than what it is.
According to her sick people in pain should be in bed sleeping. My pain is near constant. She's only suffered from labor and the flu. I can't sleep for my entire life. I raise this point and she, in a round-about-way, accuses me of just being a hypochondriac since I'm healthy enough to sit in a chair (on my heating pad) and play those "damn" games.
I don't know about anyone else..but sleep is impossible if you're in pain. I know a lot of ICers hardly sleep because of this.
I could very likely get my uro to write her a note, but really, she won't even read the most basic information on IC despite how I present it to her. I really want to move out but just can't.
In the end I was near tears. She says how she must work in the rain and deal with abusive bosses... but I'd trade her my life for hers. While her job is shit, she owns a motorcycle and goes on many adventures with my stepdad when she's off. They just went to Georgia. They always ride in bike rallies. They have plans to go to the Bahamas.
I'm too afraid to leave my property much less state. She attends rock concerts and parties. I stay at home sorta high on Soma and click a mouse at people because it doesn't require walking or pelvic motion of anytime.
If you have IC, you HAVE to have something to distract yourself with.. mine is raging at people on my team that only speak Spanish and die a lot. Plus I do generally have fun.
Skyrim is sitting under the tree.. I'll get that tomorrow.. Melee Kahjiit it is.
I cooked some good gumbo.
I'm very diet sensitive, of course. Only things that went it was oregano, fresh garlic cloves, basil, crab meat, and shrimp meat. My mom did buy the ingredients for it, but I split it half-and half with her as repayment. The meat was bought at a local stand, so no preservatives. The kicker? The woman running it has IC too. This is a small town I'm in. And I now know of two women with IC. Evidently hers is mild and only hurts if she drinks soda. If course, my mother compared me to her and asked why is she doing so much better than me.
Earlier we got in a fight again. I wouldn't say fight. I was just submissive. She complained how I never clean house and I'm always playing on "that damn computer."
Well. The computer is my only access to the outside world and.. I do a lot more research than reading... that aside, I do try to keep up with things, but in the mornings of winter I MUST have an hour's time to take pain meds, sit on a heating pad, and relax, hopefully with breakfast.. after that I may continue to hurt, or I may not. At which point I'll either tackle some house work or remain on the heating pad.
The main problem with my mom is that even when I do clean, it only brings more complaints. I do the dishes, why didn't I clean behind the toaster? (Because I don't think to move the toaster every day to see how nasty it is.. I can't even eat anything that comes out of it.)
Towels is the main argument. I do towels daily, but there's always a pile on the floor despite having stocks in the bathroom for use. This is because I must urinate in the tub with warm water spraying at the pelvis to control spasms. Since I'm on the pill that turns my urine blue, this leads to blue stains in the tub. She complains constantly about this as well. I do spray bleach in it about once every two days, but it's my only option. I tell her I'm sorry. Because of this I use a towel to dry off before leaving the bathroom. We don't have actual heating in the house, just electric heaters where we need them. This doesn't include the hall. It is very cold, and bad for spasms, so I often will leave my towel on the floor until I come back out for something else after being fully dried and re-warmed. She complains about this and doesn't understand why I leave towels on the floor.
Thing is, I just don't pick it up fast enough. When she leaves on vacation everything gets done, just as it does now, but everything must be done on her time and not on my bladder's time.
Its 7 A.M. now. I'm tired. I want to sleep. But my bladder controls my schedule. I must complete this water bottle or else I will awaken with burning from condensed urine in an already irritated bladder.
I would really like to see a therapist about all this. The pain, dealing with family who can't understand, and worries about my future. Sadly, this is a cache 22. I'm chronically ill with pain and am very hesitant to leave the house. The therapist is not at my house, and if I call in absent on the day of the appointment enough times they can drop me. Worst thing about IC is its unpredictable. Symptoms change every four hours for me, or in other words, every time I urinate. There's no such thing as web-therapists that I know of.. or at least, a therapist that'll meet me in person and maybe do e-mail or chat sessions with me on bad days. Do they do this? I don't know.
And yet again, this costs money.. the final thing my mom was complaining about. I live off financial aid from my school. I don't get paid until February. Right now my boyfriend is paying for most of everything. I can't reimburse my mom for what she spent on my medications. Per month, with good insurance, I'd say its about $50.. and I'm broke.
The way she words it is that I should be doing "something" for money. But who will hire a person that can only work maybe 4 to 6 hours a day on good days and be absent many days for winter? During the summer I could perhaps find a seasonal job.. but now I'm fairly useless in most ways. Only thing keeping me sane is my boyfriend who gets it.
Feeling like I'm being blamed for my illness, or lying about the pain, due to the words of close family members hurt a lot. ICers are 3-5 times more likely to commit suicide than healthy people. They say the main reason is from the pain, which I can see, but also definitely when there's little family support. Mother does support me, but she makes sure I know she thinks I'm playing my pain up more than what it is.
According to her sick people in pain should be in bed sleeping. My pain is near constant. She's only suffered from labor and the flu. I can't sleep for my entire life. I raise this point and she, in a round-about-way, accuses me of just being a hypochondriac since I'm healthy enough to sit in a chair (on my heating pad) and play those "damn" games.
I don't know about anyone else..but sleep is impossible if you're in pain. I know a lot of ICers hardly sleep because of this.
I could very likely get my uro to write her a note, but really, she won't even read the most basic information on IC despite how I present it to her. I really want to move out but just can't.
In the end I was near tears. She says how she must work in the rain and deal with abusive bosses... but I'd trade her my life for hers. While her job is shit, she owns a motorcycle and goes on many adventures with my stepdad when she's off. They just went to Georgia. They always ride in bike rallies. They have plans to go to the Bahamas.
I'm too afraid to leave my property much less state. She attends rock concerts and parties. I stay at home sorta high on Soma and click a mouse at people because it doesn't require walking or pelvic motion of anytime.
Friday, December 23, 2011
The Blind
Mother continues to dismiss my pain. I requested help getting a fold up wheelchair for campus use weeks ago and she said it was stupid, I would only weaken my legs despite me telling her I wasn't going to use it in the house.
After the flare yesterday I've decided that I do NEED one for those days. Bonus points if I can find a battery operated heating pad.
You know what she did? She gave away my Grandmother's scooter to my uncle (which is fine, because I can't load that in my car and he has cancer), BUT the folding wheelchair? She's giving it to some distant relative who's "old."
So I'm not "old" enough in her eyes to use a wheelchair to prevent flares. When I talked to her again, asking for the free wheel chair she said, and I quote, "That's ridiculous."
The hardest part is at the beginning of this she was very supportive. She made food for me when I couldn't leave bed, bought me things I could eat, and paid for my meds. Now? No. Now I'm just making it up because I should be "better" by now. I've been completely dismissed. I'm going to try and get one through insurance. So rather than give me a free one, I have to waste more money.
After the flare yesterday I've decided that I do NEED one for those days. Bonus points if I can find a battery operated heating pad.
You know what she did? She gave away my Grandmother's scooter to my uncle (which is fine, because I can't load that in my car and he has cancer), BUT the folding wheelchair? She's giving it to some distant relative who's "old."
So I'm not "old" enough in her eyes to use a wheelchair to prevent flares. When I talked to her again, asking for the free wheel chair she said, and I quote, "That's ridiculous."
The hardest part is at the beginning of this she was very supportive. She made food for me when I couldn't leave bed, bought me things I could eat, and paid for my meds. Now? No. Now I'm just making it up because I should be "better" by now. I've been completely dismissed. I'm going to try and get one through insurance. So rather than give me a free one, I have to waste more money.
Saturday, December 3, 2011
Not looking well.
I'm not sure if the cyclosporine is working. I've had terrible pains since 6. I took everything I could constantly., had a small period of time where I was mostly pain free, but as soon as I urinated everything went to hell despite the massive amounts of muscle relaxers I took. It's these damn cold fronts. I'm positive the temperature must have dropped by 10 degrees at least, and I can say this without even going outside. This Soma needs to hurry up and knock me out. I might end up going the way of Michael Jackson, when you're in pain you don't give a shit.
This isn't like labor pain, or a very painful medical procedure because this pain is chronic. I could stay in this state for a day, or weeks. I think my doctor's given me everything she can. And even with all this high leveled, controlled substances it still feels like there's and angry cat in the bladder. It burns and it spasms.
Earlier today I only spasmed when I walked, so this lead me into look for cheap wheelchairs for when I have to leave the house in this condition. Well now its just ripping itself apart for no reason. My mom discouraged the wheel chair idea, but if this is going to happen every winter I need something else to help!
Oh, right, and my pharmacy is out of cyclosporine anyway so I have to wake up early and go to this other place that magically conjures up whatever medication exists. Its more expensive, but probably because they have hired a wizard.
This isn't like labor pain, or a very painful medical procedure because this pain is chronic. I could stay in this state for a day, or weeks. I think my doctor's given me everything she can. And even with all this high leveled, controlled substances it still feels like there's and angry cat in the bladder. It burns and it spasms.
Earlier today I only spasmed when I walked, so this lead me into look for cheap wheelchairs for when I have to leave the house in this condition. Well now its just ripping itself apart for no reason. My mom discouraged the wheel chair idea, but if this is going to happen every winter I need something else to help!
Oh, right, and my pharmacy is out of cyclosporine anyway so I have to wake up early and go to this other place that magically conjures up whatever medication exists. Its more expensive, but probably because they have hired a wizard.
Sunday, November 27, 2011
The Winter Flare
I don't know how much the temperature dropped. All I know is that last night things were warm enough to have the air conditioner on for awhile. I wake up and notice my boyfriend has out the heat on full blast, and this is a guy who finds 70 too hot.
I do my daily chores and find it it feels kinda chilly. Usually I get a 4 hour break from pain right after waking up. Today wasn't like that. Pain and burning from the start, I took all pain killers and my eyes are terribly dilated but I still hurt.
My Grandmother just died. Original plans was wake on tomorrow, which I could attend. Now they've moved everything to Tuesday. I have school on Tuesday. The two events happen at different times, but I'm flaring and I only have a 4 hour break. I must choose. Usually I'd pick the funeral, but it is the week before finals where teachers tend to give study guides to the "good" students who came to class. I need that guide. I'll email her and ask for notes and everything.
If that fails then I get to look like a worthless, selfish member of the family because no one understand the type of pain this disease causes.
This related to the spoon theory (http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/). I don't have enough spoons for both. I told my mom this and she got very mad and disappointed to the point of making me cry. I DON'T WANT TO BE LIKE THIS. I WANT TO BE HEALTHY. It's not my fault, but that's never the message conveyed from her.
I do my daily chores and find it it feels kinda chilly. Usually I get a 4 hour break from pain right after waking up. Today wasn't like that. Pain and burning from the start, I took all pain killers and my eyes are terribly dilated but I still hurt.
My Grandmother just died. Original plans was wake on tomorrow, which I could attend. Now they've moved everything to Tuesday. I have school on Tuesday. The two events happen at different times, but I'm flaring and I only have a 4 hour break. I must choose. Usually I'd pick the funeral, but it is the week before finals where teachers tend to give study guides to the "good" students who came to class. I need that guide. I'll email her and ask for notes and everything.
If that fails then I get to look like a worthless, selfish member of the family because no one understand the type of pain this disease causes.
This related to the spoon theory (http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/). I don't have enough spoons for both. I told my mom this and she got very mad and disappointed to the point of making me cry. I DON'T WANT TO BE LIKE THIS. I WANT TO BE HEALTHY. It's not my fault, but that's never the message conveyed from her.
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