Do you know how it is when everything hits at once?
I've got some things going on including some legal and some medical. For me, that is.
But one of my aunts got lymphoma of the brain. She has RA. She had surgery/treatment and she was to be recovered from severe dementia right now. And she isn't.
Another beloved aunt has Parkinson's and is now coping with dementia. She just broke her hip and responded well to surgery, but for some reason developed a terrible bedsore and possibly pneumonia as well. I fought pneumonia myself after catching it in the hospital in late February, not as severe as hers of course, but it reminds me of how sometimes hospitals have bugs going around. Incidentally (!) she is also blind from macular degeneration.
Anyway, I am praying for them.
Another aunt is developmentally disabled and I just received a call from the facility she is in because they needed a relative to give permission for her infected thumb to be treated.
My cousin and his wife had been the contact persons for aunt lymphoma and aunt developmentally disabled. But cousin himself had brain cancer a few years ago and now has leptomenginial carcinomatosis. Not the greatest diagnosis. His wife, who is a truly brilliant and strong woman who has been coordinating the responses to our family's current medical madness, has severe MS herself. How does she do it? I don't know but I am planning to go back east, where they live, and hope to help her out despite my own challenges.
My sister is being wonderful through this and I hope in some way I am helping her out.
Btw she and I both have SLE.
Our father died when we were very young. I was six and sis was four. We know little of his family. Our mother's family is the one who is being affected by all of the above. We don't have an endless supply of aunts and uncles and have already lost some.
All of this at once??? Maybe it is just the way of things. In some way it helps keep me numb so I avoid a lot of searing emotional pain I otherwise would have.
Prayers for everyone. Prayers for you, who read this. Sending out love. It is the only way to live.
Showing posts with label cancer. Show all posts
Showing posts with label cancer. Show all posts
Thursday, September 22, 2011
Tuesday, December 21, 2010
Christmas List
I'm not really writing this to plug my Amazon wish list ;)
At my age and income level, lists like this are more a useful reminder for me, for use IF a day ever shows up when I have any extra $ to spend frivolously!
What with deductibles, copays, over-the-counter health care stuff, and trying to live on disability income, in a political climate which is getting harsher and harsher for folks like me... I'm not counting on a windfall.
Ah, well. Sometimes it feels like Scrooge will never get the visits from the three spirits in my lifetime. I often feel crushed by a heavy weight not of my own making. When did I ask to get sick? or for medical care to be so expensive, or for the medical insurance system I live under to exclude me from the middle-class economy?
Anyway, another list. I've had at least three major diagnoses in my own Christmases past. One was SLE on December 24, 1985. One was diabetes on December 26, 2008. And one was uterine cancer on December 16, 2009.
Christmas gratitude: I'm still here :)
Thank you, Santa, doctors, scientists, taxpayers, family, friends, luck, and my personal loving God. What a beautiful gift.
Happy holidays to everyone!
At my age and income level, lists like this are more a useful reminder for me, for use IF a day ever shows up when I have any extra $ to spend frivolously!
What with deductibles, copays, over-the-counter health care stuff, and trying to live on disability income, in a political climate which is getting harsher and harsher for folks like me... I'm not counting on a windfall.
Ah, well. Sometimes it feels like Scrooge will never get the visits from the three spirits in my lifetime. I often feel crushed by a heavy weight not of my own making. When did I ask to get sick? or for medical care to be so expensive, or for the medical insurance system I live under to exclude me from the middle-class economy?
Anyway, another list. I've had at least three major diagnoses in my own Christmases past. One was SLE on December 24, 1985. One was diabetes on December 26, 2008. And one was uterine cancer on December 16, 2009.
Christmas gratitude: I'm still here :)
Thank you, Santa, doctors, scientists, taxpayers, family, friends, luck, and my personal loving God. What a beautiful gift.
Happy holidays to everyone!
Christmas sphere, photographer Idea Go
Sunday, July 11, 2010
Resucing My Brain, And Drugwatch.com
I've had a terrible time lately with memory and concentration problems. These have been typical for me over the course of the years with lupus cognitive impairment. However, all of my autoimmune-related blood work is actually really really good at the moment...good enough to have me wondering if my lab report got switched with someone else's! Not that I believe the tests we currently have available are always accurate monitors of lupus activity. Big NO there! :)
But this current problem with cognition just kind of "feels different" from what I have unfortunately had to become used to with SLE. It is actually a different sensation that I seem to feel inside my head. I don't go around describing this sort of thing much because I don't want to get locked up in a psych ward. I have this horrific fear of going to a psych ward and having to explain my problem with fluorescent lighting, and then being assigned to a floor where at least one person thinks he the Antichrist, Hitler, Napoleon, George III. Or Rush Limbaugh.
Slowly and inefficiently, due to the fact that the researcher here is also the one having the brain problem (I smell irony there; does anyone else?) I've been trying to find out what could be going on in my head besides lupus. I had the cancer surgery in January, and am aware that there has been discussion in the past about possible long-term effects of anesthesia upon cognitive function, although the focus has been mainly on the elderly.
I'm also in the process of learning about the effects of surgical menopause, which include possible cognitive dysfunction related to the loss of estrogen.
Lastly, I want to mention that although I am a long-term migraineur, I have been avoiding taking the drug Topamax due to its reputation regarding possible effects upon memory and cognition. Quote of the day: "If you don't have a temporal lobe dysfunction or problems with other parts of your brain that Topamax hits, or you're at the wrong dosage, it will make you dumber than a box of rocks."
After all that I have been through with lupus brain involvement, I just didn't want to potentially add to that particular set of problems in any way, and risk becoming more rocklike. So I've been sort of skirting around Topamax, trying a lot of other medications for migraine control and treatment, even though Topamax helped a close family member and therefore might be a drug which would reduce my migraine frequency.
And lo and behold, I learned tonight that a medication I recently started, a mood stabilizer, has some things in common with Topamax. Aha! Eureka! But it turns out that it is not recommended suddenly stop this med, so now what do I do? "MAKE AN APPT WITH NEURO" may need to be printed out on a sheet of paper and stuck on my door (I have to leave this room sometime, and then I will see it!) Because now the differential diagnosis for my half-dead brain is very very complicated.
Usually when I write, words just pour out. Whether they are interesting or make any sense I can't always say :) but at least the process is pretty effortless. But no longer. It is hard to get through a paragraph without going blank at some point while writing it. And so writing is no longer one of my greatest pleasures and also, since I now find proofreading almost impossible (formerly probably one of my few stellar skills) I have no clue whether what I have written is readable. I'm actually lucky that I caught myself when I was about to post this on the wrong blog!
For the problems with writing, speaking, concentrating, remembering, making sense, and many other reasons...finding out what the heck is going on upstairs, you know, that place under my hair--is really really REALLY important to me.
So I want to thank this website: http://www.drugwatch.com *. This is where I learned more about my new medication. The site has a wealth of information which could be crucial knowledge for anyone taking medication. Although I certainly am grateful to be living in an era where "better living through chemistry" has even saved some of our lives -- pharmaceuticals are still complex things. And those of us taking a lot of medications which have never been studied in our particular combination, and who see multiple specialists, often end up needing to be doing some of our own research. Websites are certainly the cornerstone of this often homebound, impecunious chronic disease patient's ability to do research.
The more people we have looking out for those of us who have little choice but to be guinea pigs, the better, IMHO.
Speaking of looking out for anyone, please volunteer to proofread this and tell me where I screwed up by emailng me at smlupus at gmail dot com :)
* FYI, Drugwatch.com is a comprehensive website featuring information about prescription medications that are available or were previously available worldwide. Currently, Drugwatch is campaigning to spread awareness about Accutane Side Effects, which can include Crohn’s Disease, Ulcerative Colitis, birth defects and severe liver damage.
But this current problem with cognition just kind of "feels different" from what I have unfortunately had to become used to with SLE. It is actually a different sensation that I seem to feel inside my head. I don't go around describing this sort of thing much because I don't want to get locked up in a psych ward. I have this horrific fear of going to a psych ward and having to explain my problem with fluorescent lighting, and then being assigned to a floor where at least one person thinks he the Antichrist, Hitler, Napoleon, George III. Or Rush Limbaugh.
Slowly and inefficiently, due to the fact that the researcher here is also the one having the brain problem (I smell irony there; does anyone else?) I've been trying to find out what could be going on in my head besides lupus. I had the cancer surgery in January, and am aware that there has been discussion in the past about possible long-term effects of anesthesia upon cognitive function, although the focus has been mainly on the elderly.
I'm also in the process of learning about the effects of surgical menopause, which include possible cognitive dysfunction related to the loss of estrogen.
Lastly, I want to mention that although I am a long-term migraineur, I have been avoiding taking the drug Topamax due to its reputation regarding possible effects upon memory and cognition. Quote of the day: "If you don't have a temporal lobe dysfunction or problems with other parts of your brain that Topamax hits, or you're at the wrong dosage, it will make you dumber than a box of rocks."
After all that I have been through with lupus brain involvement, I just didn't want to potentially add to that particular set of problems in any way, and risk becoming more rocklike. So I've been sort of skirting around Topamax, trying a lot of other medications for migraine control and treatment, even though Topamax helped a close family member and therefore might be a drug which would reduce my migraine frequency.
And lo and behold, I learned tonight that a medication I recently started, a mood stabilizer, has some things in common with Topamax. Aha! Eureka! But it turns out that it is not recommended suddenly stop this med, so now what do I do? "MAKE AN APPT WITH NEURO" may need to be printed out on a sheet of paper and stuck on my door (I have to leave this room sometime, and then I will see it!) Because now the differential diagnosis for my half-dead brain is very very complicated.
Usually when I write, words just pour out. Whether they are interesting or make any sense I can't always say :) but at least the process is pretty effortless. But no longer. It is hard to get through a paragraph without going blank at some point while writing it. And so writing is no longer one of my greatest pleasures and also, since I now find proofreading almost impossible (formerly probably one of my few stellar skills) I have no clue whether what I have written is readable. I'm actually lucky that I caught myself when I was about to post this on the wrong blog!
For the problems with writing, speaking, concentrating, remembering, making sense, and many other reasons...finding out what the heck is going on upstairs, you know, that place under my hair--is really really REALLY important to me.
So I want to thank this website: http://www.drugwatch.com *. This is where I learned more about my new medication. The site has a wealth of information which could be crucial knowledge for anyone taking medication. Although I certainly am grateful to be living in an era where "better living through chemistry" has even saved some of our lives -- pharmaceuticals are still complex things. And those of us taking a lot of medications which have never been studied in our particular combination, and who see multiple specialists, often end up needing to be doing some of our own research. Websites are certainly the cornerstone of this often homebound, impecunious chronic disease patient's ability to do research.
The more people we have looking out for those of us who have little choice but to be guinea pigs, the better, IMHO.
Speaking of looking out for anyone, please volunteer to proofread this and tell me where I screwed up by emailng me at smlupus at gmail dot com :)
* FYI, Drugwatch.com is a comprehensive website featuring information about prescription medications that are available or were previously available worldwide. Currently, Drugwatch is campaigning to spread awareness about Accutane Side Effects, which can include Crohn’s Disease, Ulcerative Colitis, birth defects and severe liver damage.
Tuesday, May 18, 2010
And Now, For The Nuclear Option...
(Psst...photo is just clouds...no nukes.)
I'm sorry, but I'm going to be randomizing instead of writing...I'm down-to-the-bone exhausted and barely know what year it is. Surprise, surprise, I've had a few more rough weeks in Lupus Land! My way of celebrating Lupus Awareness Month, woo-hoo! Let's all join in, and SING!!! (no. not really. definitely not. please stop singing.)
For some reason, my blood work is really good now. That should be wonderful news, but a lot of us autoimmune types go through icky times when our tests come out great, but yet we still feel like some evil spirit comes to visit us in the night, sucks out all our energy, tears up our muscles, and smashes our bones. Somehow. With perfect blood work. Truly. As to why, don't know what to tell you.
Lately I've been feeling like I did pre-diagnosis, many years ago: migraines, some problems with memory and concentration, and every time the barometric pressure dips I'm totally disabled by the kind of fatigue that is just on the sharp edge of I-HAVE-TO-SLEEP-NOW...and, also, wicked arthritis.
This week, we had some rain, which I actually love. Why do I love rain...? Maybe I enjoy having moist conditions to offset the tyranny of Sjogren's Syndrome , and cloudy conditions to keep me from getting sicker from lupus. My lupus brain involvement gets worse with UV exposure. It's really peachy, to not have my brain fried. So rain, sure! Bring it on!
It's just that lately the pre-rain, or even just pre-clouds, have been so horrible for me that I haven't been able to write all that much...because my painful, swollen hands "Just. Say. No."
I'm trying to plan out our upcoming move. And I don't have $ for movers, and this is really worrying me because I have had to face reality: I cannot pack anything up. Even with my great blood work. My hands won't do it. They are on strike. They don't care about the blood work.
So, so. Another non-fun thing that happened recently was yet another change in my psychiatric meds. I've suffered from depression for decades, a condition which often goes with lupus. More on this here: http://beepbeep.livejournal.com/1128077.html .
A while ago, I was on a high dose of a medication that has a short half-life and a nasty withdrawal syndrome (a syndrome to which I turned out to be very susceptible.) So every time I had to take a dose of this med late, or miss a dose (like with insurance delays in working things out with the pharmacy--and I KNOW I'm not alone in having stuff like that happen!), I became violently depressed, like to where I was afraid I might kill myself. And, I'm told, I was very hard to be around. So when my doc told me he thought I needed to go off of this med entirely, I agreed.
But as I've been decreasing this antidepressant, I've become more...depressed. Kind of makes sense? Added to this is the withdrawal syndrome, where every time I have to make my 37.5 mg "jump" downward, I have dangerous misery for up to a week--sometimes longer. (Speaking of misery, when I originally was taken down an entire 150 mg at once...it was a living nightmare.) The 37.5 jump is worlds better than faster reductions but still is a very harsh experience. I've very glad I'm only on 37.5 mg /day total, now. There will be an end to this withdrawal syndrome, when there is nothing left to withdraw!
However, since I'm slowly getting more and more depressed, another med I take was increased. This med is described as having some effect on depression. I'm crossing fingers that it helps. And crossing my toes.
I was also put on a second med to stabilize mood. This one can cause weight gain...and what with having had estrogen-responsive cancer, and fatty liver, and left ventricular hypertrophy in the heart, and smaller lung capacity than I should have, and diabetes, and probably some other things I left out, I can't have any more weight gain. (This is all aside from what obesity for so many years has done to my social life and my self-esteem.) I haven't fought my way out of prednisone obesity by any means, but was actually starting to lose a little weight, finally, and that made me feel like possibly I might not die in five years from obesity-related problems after all.
Ok. I started the brand-new med on Friday. It's Tuesday. And I've gained six pounds. I'm also swollen, have miserable nausea and queasiness as well as severe stomach pain, and am exhausted from waking up at night choking on whatever I had for dinner.
My long-standing reflux esophagitis has been a difficult case, complicated by good old obesity and also a large hiatal hernia, and I've had to take four omneprazole/day and elevate the head of my bed so my bed as treatments. I hate doing this; my bed is so unstable I feel a bit nervous. Oh, I also can't eat too close to bedtime, and...blah blah blah, more stuff. All so I don't get reflux in my lungs, like I did once and had resulting pneumonia. All of this means it could be a bad thing for me to keep taking a med that is giving me such GI problems.
Well, my psych doc is out of town. I had to make an executive decision. I left him a message. None of this med tonight. I'm sorry; patient no longer complying.
Maybe the doc can work with my gastro or my endo, or another doc, or a bunch of them and come up with a way I can tolerate this drug. And that would be fine with me, but for now it is going to have to be a NO. What this NO will do to the depression, I don't know.
But, I woke up feeling emotionally better today, though exhausted from not getting to sleep thru the night. I am sure it is that the withdrawal syndrome is starting to fade. It is a good thing I was more together today than yesterday because I had to drive down to LA and back for my checkup with my gynecologic oncologist. Because of the rain and slick roads there were some accidents on the freeway and this made the trip longer. I am so tired I can't get out of bed now. Dburr will bring a light meal to my bed...bless him.
So, nuclear, at last. I hadn't forgotten.
I was assured that I don't have a change in the stage of my cancer or anything like that. But because I had multiple tumors, the recommendation is for me to have some radiation. This will be internal radiation and I've been referred to radiation specialists in Santa Barbara.
Sometimes I have a problem with showing people how I really feel because I've been through so much in my life that I'm kind of used to unpleasant stuff cropping up. For example, my psych has trouble believing how severely I get depressed. He said, "You don't look depressed."
And I know I don't look or act scared right now, either. My first comment upon hearing the news was actually, "I hope they (the radiation docs) take Medicare." And the first worry I expressed out loud to anyone was about the damn copays I don't have the money for.
No, I shouldn't have to worry about every cent with all I go through in life, but I do. It's like always having to look down a dark tunnel and hope a train isn't coming, and if I think about finances too long I just start to cry. When I'm alone, that is. I know that worry like this always makes me sicker but still, to look at me, no one knows that I'm about to collapse from a crushing burden of stress.
So, I don't outwardly show any fear of the nuclear option. Bring on the nukes. Take no prisoners. Big C, you're not welcome here.
But psst...I wouldn't turn down a hug.
Friday, February 5, 2010
Two Week Anniversary
I announced the big news elsewhere first and I'm sorry I ran out of steam and didn't put it here!
I had my surgery for uterine cancer two weeks ago. I had a very hard time in the hospital, and am making a list of things that I was surprised to have to endure, but my surgeon was top-notch. It looks like the cancer (endometrial adenocarcinoma) carpeted the uterine wall but did not, after all, penetrate it. This was a relief and means I am stage 1a, although grade 2. Stage 1a is the best :) The cancer was caught early and the surgery should be curative!!!
So I'll be around to continue to write meaningless drivel in blogs ;)
Back to the subject of this one: I've been suffering somewhat in my recuperation due to joint pain, periodic low-grade fevers, muscle aches, migraines, pleuritis...lupus, back in town. I'm also just about to lose my voice again and I don't know if it's the Sjogren's (dry eyes, even though it's raining for a change!) or inflammation in the vocal joint. I need to return phone calls but may have to beg for a volunteer secretary! Heck, I need an entourage.
Don and my mom have been doing so much so that I can get better.
My mom works all day to cook and clean and do laundry. This is a gift from heaven. One reason that where I live is such a disaster area which is truly dangerous to me is that there have been so many times where I am just too ill to do much--and there isn't anyone around who can do all of this when I can't. Don has to focus on keeping his job, or we will be in even bigger financial trouble than we are now. As it is, he's lucky to have any work at all in this economy which has been very hard on everyone we know in the tech world.
But I am trying to enforce rest periods on mom. Caregivers need to take breaks. Mom looks a LOT younger than she is, but she's 76, for God's sake. I've already drained her retirement money for my medical bills and the massive over the counter medically-related expenses I have all the time... I am very stressed by the fact that I can't think of anything I can do to ever make this up to her and to help her out.
And now Mom's expected to be a nurse! Since Medicare home health care can't have a nurse come out daily indefinitely (it's not like the current social climate is going to encourage any increases in the help provided to seriously ill or injured citizens) , my caregivers have to be taught how to clean (with saline), unpack and pack (with gauze), my infected incision (I've only got two B cells from an experimental trial of rituxan; what did anyone expect? although btw the drug DID help me with the lupus!) -- and put the dressing (gauze and pad) on with special tape.
When poor mom was watching the nurse today in order to learn how to do this, she looked like she might faint. She is scared of hurting me when digging the the packing out. And the strip of packed gauze, covered with blood/ooze when extracted from my wound before putting in a new one, is not the most pleasant thing to look at..Don, on the other hand, despite only being able to see with one eye--and with that eye only when up very close to what he is looking at--really loves medical procedures. He's been my uncredentialed doctor here at home and has truly helped keep me alive. I think he's ready to do surgery now ;)
The wound being infected means I'll have a longer recovery period than previously estimated. But I already knew that I would take longer than the average bear, since the incision is a long and deep vertical one instead of the tiny one I would have had if the cancer could have all come out via laparoscopy.
I am so glad the cancer is out. There are so many reasons I don't want to leave the world right now. I am so grateful I have a good chance to stay. I have a lot of people to thank, including my sister Patricia who made sure I got to a good surgeon despite my severe financial problems and even took off of work to be my patient advocate on numerous occasions, and my best friend Joyce who helped me in the hospital and drove me all the way to LA for my postop, and a LOT of others who have been loving and supportive and have helped me in getting through this.
I want to thank a lot more people when I'm not exhausted from such strenuous things as typing a blog entry on soft touch keys while lying in bed. I'm not going to win any stamina contests right now. Also, Medicare has paid for a great deal of help for me, including the nursing services and an occupational therapist and an a physical therapist coming to where I live. I want to explain more about this, but I get so tired when I try to do much of anything and so have to end this blog entry...more later but when I've had more rest !
(((hugs)))
I had my surgery for uterine cancer two weeks ago. I had a very hard time in the hospital, and am making a list of things that I was surprised to have to endure, but my surgeon was top-notch. It looks like the cancer (endometrial adenocarcinoma) carpeted the uterine wall but did not, after all, penetrate it. This was a relief and means I am stage 1a, although grade 2. Stage 1a is the best :) The cancer was caught early and the surgery should be curative!!!
So I'll be around to continue to write meaningless drivel in blogs ;)
Back to the subject of this one: I've been suffering somewhat in my recuperation due to joint pain, periodic low-grade fevers, muscle aches, migraines, pleuritis...lupus, back in town. I'm also just about to lose my voice again and I don't know if it's the Sjogren's (dry eyes, even though it's raining for a change!) or inflammation in the vocal joint. I need to return phone calls but may have to beg for a volunteer secretary! Heck, I need an entourage.
Don and my mom have been doing so much so that I can get better.
My mom works all day to cook and clean and do laundry. This is a gift from heaven. One reason that where I live is such a disaster area which is truly dangerous to me is that there have been so many times where I am just too ill to do much--and there isn't anyone around who can do all of this when I can't. Don has to focus on keeping his job, or we will be in even bigger financial trouble than we are now. As it is, he's lucky to have any work at all in this economy which has been very hard on everyone we know in the tech world.
But I am trying to enforce rest periods on mom. Caregivers need to take breaks. Mom looks a LOT younger than she is, but she's 76, for God's sake. I've already drained her retirement money for my medical bills and the massive over the counter medically-related expenses I have all the time... I am very stressed by the fact that I can't think of anything I can do to ever make this up to her and to help her out.
And now Mom's expected to be a nurse! Since Medicare home health care can't have a nurse come out daily indefinitely (it's not like the current social climate is going to encourage any increases in the help provided to seriously ill or injured citizens) , my caregivers have to be taught how to clean (with saline), unpack and pack (with gauze), my infected incision (I've only got two B cells from an experimental trial of rituxan; what did anyone expect? although btw the drug DID help me with the lupus!) -- and put the dressing (gauze and pad) on with special tape.
When poor mom was watching the nurse today in order to learn how to do this, she looked like she might faint. She is scared of hurting me when digging the the packing out. And the strip of packed gauze, covered with blood/ooze when extracted from my wound before putting in a new one, is not the most pleasant thing to look at..Don, on the other hand, despite only being able to see with one eye--and with that eye only when up very close to what he is looking at--really loves medical procedures. He's been my uncredentialed doctor here at home and has truly helped keep me alive. I think he's ready to do surgery now ;)
The wound being infected means I'll have a longer recovery period than previously estimated. But I already knew that I would take longer than the average bear, since the incision is a long and deep vertical one instead of the tiny one I would have had if the cancer could have all come out via laparoscopy.
I am so glad the cancer is out. There are so many reasons I don't want to leave the world right now. I am so grateful I have a good chance to stay. I have a lot of people to thank, including my sister Patricia who made sure I got to a good surgeon despite my severe financial problems and even took off of work to be my patient advocate on numerous occasions, and my best friend Joyce who helped me in the hospital and drove me all the way to LA for my postop, and a LOT of others who have been loving and supportive and have helped me in getting through this.
I want to thank a lot more people when I'm not exhausted from such strenuous things as typing a blog entry on soft touch keys while lying in bed. I'm not going to win any stamina contests right now. Also, Medicare has paid for a great deal of help for me, including the nursing services and an occupational therapist and an a physical therapist coming to where I live. I want to explain more about this, but I get so tired when I try to do much of anything and so have to end this blog entry...more later but when I've had more rest !
(((hugs)))
Monday, February 1, 2010
It's Been A Hard Day's Night
And I remember hearing the band who wrote that song on the radio BEFORE they broke up. I'm practically a centenarian. My favorite band, too.
I've been posting at another blog just because I had surgery and a rough hospital time and then recuperating at home comfortably with wonderful caregivers (my mom and Don) but with medical surprises every day. Quite an adventure, but I would have vastly preferred Disneyland. I really miss Disneyland. Before it got so expensive, I went every year for my birthday. I want to go again after I survive this current ordeal. I need a treat, really badly.
I want to write about some of this but right now I have to get ready for an important medical appt. in L.A. But here are some of the posts I really should have made here.
Boy is cancer time-consuming. I'd say I almost miss lupus, except, of course, lupus hasn't gone away. Makes it interesting when my ability to do activities of daily living gets evaluated ("but it will be different tomorrow", I mutter, under my breath. Cancer is the newbie on MY diagnosis list.)
http://beepbeep.livejournal.com/1115050.html
http://beepbeep.livejournal.com/1115335.html
http://beepbeep.livejournal.com/1115449.html
I've been posting at another blog just because I had surgery and a rough hospital time and then recuperating at home comfortably with wonderful caregivers (my mom and Don) but with medical surprises every day. Quite an adventure, but I would have vastly preferred Disneyland. I really miss Disneyland. Before it got so expensive, I went every year for my birthday. I want to go again after I survive this current ordeal. I need a treat, really badly.
I want to write about some of this but right now I have to get ready for an important medical appt. in L.A. But here are some of the posts I really should have made here.
Boy is cancer time-consuming. I'd say I almost miss lupus, except, of course, lupus hasn't gone away. Makes it interesting when my ability to do activities of daily living gets evaluated ("but it will be different tomorrow", I mutter, under my breath. Cancer is the newbie on MY diagnosis list.)
http://beepbeep.livejournal.com/1115050.html
http://beepbeep.livejournal.com/1115335.html
http://beepbeep.livejournal.com/1115449.html
Tuesday, January 19, 2010
And Now, I'm Going To Complain
I haven't been whining (I think) but I'm going to whine now because I am TIRED and IN A HURRY! :)
There were a lot of things I really wanted to get done before surgery on Friday. There was a photo album I was making for someone I've known for years that I'd hoped to get done by Christmas and couldn't. There was straightening out where I live so that I won't break my ankle when I get home from surgery. There was packing a bag FOR the surgery, remembering of course that I need to bring my own everything when I stay in a hospital because I'm allergic to almost all toiletries etc. There was answering a backlog of email that came about because of the extreme fatigue episodes I am experiencing with a combo of cancer AND lupus. There were medical records and information to get together to bring to the hospital, stuff to do for the pet crabs and the fish, asking two friends whom I've been helping out with some projects if there was anything they needed before I have the surgery, massive medical debt to re-structure and last-minute bills to pay, I could go on (oh yes I really want to go on and on and on! bleh!!) but guess what? I don't have time!
I don't have time because Murphy's Law will NOT leave me alone. Just a few examples...several things around here have suddenly chosen this time to break. Despite the financial crisis I've had to buy things like replacement lamps and a lot of other stuff I don't have time to list. One of the big things is my computer, which supposedly has "liquid damage" which Apple doesn't cover. So I paid for half the cost of a logic board and that was to fix it, but guess what? It died again. Now it had to be sent away. They say Apple will pay the rest but we'll see what Murphy has to say about that. It's a very bad time for me to be without the computer. Almost everything I had to do paperwork-wise is now 100x harder. It's helped that Don put some of my stuff on his laptop temporarily but of course that's only for the next day or two since he needs it back.
Our laptops were bought at the same time. His is wonderful. Mine can't seem to function at all. I WOULD get the lemon instead of the Apple. If I need a new computer, I'm SOL, never mind that it is pretty much the center of my life.
I had a really painful eye infection which was eliminated by eye drops. Guess what's baaaaack? Can I reach the eye doc? NO! Can I get refills on the prescription? Of course not!
Today was my day to catch up and wrap up some of the loose ends. I knew I couldn't do everything but I could do the essentials. Tomorrow I have MD appts out of town and then my mom is coming and then I HAVE to pack. Thursday I take a laxative and have a miserable liquid diet so mom is going to drive me down to the family compound (it's a house that is just my name for it, lol) and I will stay overnight and then my truly sainted family is going to get me to the hospital by 5:15 am Friday.
Well, that was the plan.
So we get our badly-needed rain now, at last. Except it's not just rain, it's a major storm, being compared to the one in 2005 when yours truly got stuck in LA due to a landslide which blocked the freeway. The worst is expected for tomorrow and Thursday. I guess we'll just see how mom and I do on the roads. I so needed this complication.
And just to make sure that nothing gets done on time whatsoever, I just found out that I was to see my surgeon today, except that I'm not on the books which means no one told me. I have to go to LA now, so I'll see you on the flip side. I think I have time to shower and get gas and leave early enough to allow time for the storm. I think...
I am so tired!
Oh and no. Dburr can't help me. He's got a major project for work. Also, we're talking about CLEANING, here. He'd rather serve time in San Quentin.
There were a lot of things I really wanted to get done before surgery on Friday. There was a photo album I was making for someone I've known for years that I'd hoped to get done by Christmas and couldn't. There was straightening out where I live so that I won't break my ankle when I get home from surgery. There was packing a bag FOR the surgery, remembering of course that I need to bring my own everything when I stay in a hospital because I'm allergic to almost all toiletries etc. There was answering a backlog of email that came about because of the extreme fatigue episodes I am experiencing with a combo of cancer AND lupus. There were medical records and information to get together to bring to the hospital, stuff to do for the pet crabs and the fish, asking two friends whom I've been helping out with some projects if there was anything they needed before I have the surgery, massive medical debt to re-structure and last-minute bills to pay, I could go on (oh yes I really want to go on and on and on! bleh!!) but guess what? I don't have time!
I don't have time because Murphy's Law will NOT leave me alone. Just a few examples...several things around here have suddenly chosen this time to break. Despite the financial crisis I've had to buy things like replacement lamps and a lot of other stuff I don't have time to list. One of the big things is my computer, which supposedly has "liquid damage" which Apple doesn't cover. So I paid for half the cost of a logic board and that was to fix it, but guess what? It died again. Now it had to be sent away. They say Apple will pay the rest but we'll see what Murphy has to say about that. It's a very bad time for me to be without the computer. Almost everything I had to do paperwork-wise is now 100x harder. It's helped that Don put some of my stuff on his laptop temporarily but of course that's only for the next day or two since he needs it back.
Our laptops were bought at the same time. His is wonderful. Mine can't seem to function at all. I WOULD get the lemon instead of the Apple. If I need a new computer, I'm SOL, never mind that it is pretty much the center of my life.
I had a really painful eye infection which was eliminated by eye drops. Guess what's baaaaack? Can I reach the eye doc? NO! Can I get refills on the prescription? Of course not!
Today was my day to catch up and wrap up some of the loose ends. I knew I couldn't do everything but I could do the essentials. Tomorrow I have MD appts out of town and then my mom is coming and then I HAVE to pack. Thursday I take a laxative and have a miserable liquid diet so mom is going to drive me down to the family compound (it's a house that is just my name for it, lol) and I will stay overnight and then my truly sainted family is going to get me to the hospital by 5:15 am Friday.
Well, that was the plan.
So we get our badly-needed rain now, at last. Except it's not just rain, it's a major storm, being compared to the one in 2005 when yours truly got stuck in LA due to a landslide which blocked the freeway. The worst is expected for tomorrow and Thursday. I guess we'll just see how mom and I do on the roads. I so needed this complication.
And just to make sure that nothing gets done on time whatsoever, I just found out that I was to see my surgeon today, except that I'm not on the books which means no one told me. I have to go to LA now, so I'll see you on the flip side. I think I have time to shower and get gas and leave early enough to allow time for the storm. I think...
I am so tired!
Oh and no. Dburr can't help me. He's got a major project for work. Also, we're talking about CLEANING, here. He'd rather serve time in San Quentin.
Tuesday, January 5, 2010
Waiting waiting waiting, money woes, and cancer vs. lupus
I'm waiting to hear back from the tests I had done on Saturday. I got a mammogram and a pelvic ultrasound and an abdominal MRI scan. This will provide more info about the uterine cancer and where it is. The bleeding continues. Buy stock in feminine hygiene products; you heard it here first. I seem to be needing to purchase all of them, and all the time. On my credit card. Sigh. A constant reminder that I have cancer that needs to be evicted from my body. It doesn't pay me rent or anything useful like that. Get it out. Now. Or yesterday.
Anyway...I'm getting a bit nervous. Waiting is stressful. I'm trying to put the whole scary how-far-has-this-cancer-gone thing out of my mind. There is a lot I have to try and get done before the surgery and I'm focusing on that. I'm also suffering from severe fatigue, the kind where you fall asleep in the middle of eating dinner, and that really is limiting the time I need to get anything done.
My biggest non-physical anxiety right now is financial...paying for the medical stuff I need. I had to spend way too much on over-the-counter stuff and copays and travel to medical facilities last year, with a large credit card balance as a result. The cancer has only increased the medical spending. I am permitted to receive help with medical stuff if it is structured properly. My mom and Don have helped me often, and others have helped me also when and in ways that they can. I am so grateful to all.
But my major donors, Mom and Don, are experiencing significant financial strain themselves now. Neither of them should be having me as their burden. Mom is a lot older than she looks! and Don is legally blind, having severely limited vision, and has no savings, not even for retirement. He also is facing a work slowdown in the near future, and is only getting part of the salary he used to have before he was laid off during the "Great Layoffs of Late '08".
Others who have helped me in the past have now lost their jobs or have other crises of their own. Thank you, The Great Recession. Of course my benefits continue to be cut, especially here in California, where the governor is seeking a special waiver to be able to reduce Medi-Cal (California's Medicaid) spending to an even lower amount than the federally mandated minimum. He had other options, but is choosing, basically, to kill people. It's hard to take.
The folks who make policy are aware that someone in my position can't add to their income, not only due to severe illness and Social Security Disability rules for SSDI, but also due to the way Medicare Part D was structured (with significant input from the pharmaceutical companies.) Now that I will most likely lose Medi-Cal eligibility entirely (recently I ended up being eligible only every other month) I'll have the 20% Medicare copays to deal with. I already have to pay the Medicare deductible, as well as the premium for Part B, which used to be covered by the state. My medical expenses could thus easily exceed my total income.
The policymakers by and large don't really care, at least some of those who proudly call themselves fiscally conservative. "Fiscally conservative" didn't always mean that letting fellow citizens die is ok, but then again I'm old enough to remember when there were people around who would tell me that back in the day they "Liked Ike!"
In a country where 45,000 people per year die due to lack of good access to health care, why should the New Right care if the number becomes 45,001 when I get my notice that I'm just collateral damage in the budget wars? Although politicians have been willing to rack up the deficit for things they consider to be important, like bonuses for the executives of failed companies, controversial wars, tax breaks for corporations who are already almost drowning in profits such as oil companies, etc., some seem to consider sick people to be expendable.
Anyway, I'm up shit creek financially and am reduced to begging. It is embarrassing, humiliating, guilt-inducing and sometimes I just want to give up and let the consequences of not being cared about by my country happen. But then I think about the individual politicians I have heard or seen who have come right out and said that people like me who are expensive medically should just go ahead and die. Like WE were responsible for the absurdly high cost of medical care in this country.
When I think about just myself I still feel like I'm just a throw-away human, due to rock-bottom low self-esteem, but when I think about others in my position it is then that I get angry. How dare they try to calculate the value of a life based on income received in a bat-shit crazy economic system? What is the value of a loving person, a giving person, a voice for positive change, an advocate for those who don't have money, someone who has a low income due to wanting to help others rather than make profits, someone who is a sunny presence in a home? What about the person in a family or neighborhood that everyone around talks to as if they were an unpaid counselor, or the creative person who brings art and beauty to our lives, or children who don't make money but who are our future, or seniors with so much history and wisdom to impart which don't make money but enrich or knowledge and understanding...the list goes on and on. If you don't know that a human being is more than just dollars and cents, you have a personality disorder. Please excuse yourself from making public policy.
And I also remember the pond scum, I mean, the people, who have told me I SHOULD die rather than use a dime of their precious tax money to stay alive. As if they could have made any money at all without the public goods they use every day, provided by the aggregate of everyone who pays taxes, including we poor people who still pay sales taxes and often disproportionate income tax. Well, then I want to live just to spite them, and be alive to advocate for more compassion as well as more common sense, and tell them to stop whining *like they tell us to do* and...suck it up.
I'm tired of blatant selfishness, greed, and narcissism, often in the name of Christianity, believe it or not. And yes I know people are working very hard, in many cases too hard because the economy is totally screwed up--but you know, I would give an awful lot to be able to work hard, without collapsing from illness and/or losing my health coverage.
I'm experiencing a lot more sympathy and caring from people now that I have cancer, and I really appreciate all of it...and actually NEED it to get through this. It feels like too much for me on top of all the other health problems I have.
But as is discussed so often in support group meetings for autoimmune disease, those of us with lupus et. al. are often expected to function just as we would if we were not horribly sick. And we wonder why what we are going through does not generate much sympathy or support.
There are some reasons for this. Like cancer, lupus is an invisible disease in many ways, but unlike cancer, it is still not as well known. Lupus does not usually have hugely funded public information campaigns or massive fundraising efforts that get wide media coverage. Lupus also varies from person to person and even a single patient has good days and bad days. This means that people have to do something that in our culture is very difficult: to believe the patient and trust that they are not malingering or using the illness to get attention, sympathy, disability payments that are not justified, etc.
We don't trust each other anymore. We suspect fraud and deception almost unconsciously. Even a small amount of fraud often gets massive newspaper headlines and this makes people justifiably angry. There aren't huge headlines talking about morbidity or even much about mortality from lupus or other invisible disabilities. We also are convinced there are a lot of self-centered people claiming illness to get attention. Well, for one thing, see above---autoimmune disease still doesn't generate a whole lot of community concern. And I do NOT have Munchausen Syndrome. I can easily think of many more enjoyable and far less costly things to do than wait around in uncomfortable rooms with other sick people and then be examined by health professionals. I think of those license plate holders like "I'd rather be sailing." Well, I'd rather be (insert 1000+ things here.)
Lupus can have many different symptoms which change from day to day and which vary so much between patients that it is almost as if each patient has a different disease.. Other rheumatic/autoimmune diseases are often like this as well. If someone knows of a person with a mild case, the expectations placed on someone with a severe case may well be completely unrealistic, but completely unknown to the person who is viewing the patient with a critical eye.
I will admit that I haven't had an easy time over the years in part because my sister has a (so far; please cross fingers, send good thoughts, pray for her) mild case of lupus and is also one of the hardest workers on the planet. There have been many comparisons, I assure you, between the one sister who is successful in so many life areas, a true superwoman, and the other fat thing living on disability payments as partially living off of other people who can't really afford it, such as my mom and Don. (And my sister who has lupus and her husband bought me a car--and if they hadn't, I would be in a world of trouble right now. Should they have HAD to do this? No way. My sis needs to take care of her family and her own health.) Of course by the inevitable comparison I look like...a selfish, lazy, unmotivated moocher who needs a big dose of the "Tough Love" which would most likely actually kill me.
The severe prejudice against overweight people does not help. Weight as a side effect from prednisone also varies from patient to patient, and even some physicians are still seemingly unaware of how the drug can not only increase appetite but affect the metabolism which remains affected despite attempts to diet and exercise. There are actually many in the medical field who are violently prejudiced against their overweight patients. I was shocked to see some of their comments once on a New York Times forum. "They get diabetes and liver problems and some cancers, and heart disease (I'm guilty on the first three; my heart disease has not yet been somehow related to obesity) and expect me to treat them when they won't even lose the weight; I'm sick of the sight of them." The fact that over 90% of diets fail escapes them. And exercise can be problematic for the ill or disabled or overworked with little leisure time.
I learned that I personally start losing weight when I go down to a level of 600 calories per day. And that left me so tired that I was fainting in public. I am the one who has to drive myself to all the medical stuff and I can't be passing out at the wheel. Also, the diabetes and possible liver disease and the anemia don't fare so well on 600 calories. I can't do it; it's not safe for me. I have to exercise and with the wicked arthritis the exercise that gets my heart rate up is swimming, which means access to a pool that is not so crowded as to be a severe danger to someone with immunosuppression. If someone can solve this problem, I'm all ears. Where I live right now I have access to a pool but I'm not sure what I will do if I move. And for most of my life I simply could not afford such access.
The tendency to make appearance-based judgements harms patients with mild disease as well as patients with severe disease. Patients with severe disease are encouraged or in some cases actually forced to push themselves beyond what is good for their health. In the US, where work is so highly valued, I frankly think most of us with severe disease are internally driven by sheer guilt to achieve activity levels far beyond what is safe for our disease state--often with the result of making the disease worse. Did I do this to myself, out of guilt for not succeeding the way I had hoped and planned to and promised I would do in my life? Oh, God. You betcha. I went to dangerous extremes and risked my life more than once.
As for those with mild disease, the praise they receive for their level of achievement and their own sense of accomplishment despite the diagnosis can easily tempt them into a lack of respect for the disease and what it COULD do. So they can fall into a pattern of overwork, ignoring precautions such as avoiding sun exposure for the photosensitive, skipping regular medical monitoring, skipping the rest periods they need, etc. And they can also end up making their disease worse, even sometimes crossing the border into severe disease. I've seen this happen over the years, so many times, as a support group leader. I've seen people die due to forgetting that lupus is nothing to fool around with.
So what to do with people who are suddenly being caring of me, who weren't so all the years that I was struggling physically, financially, and even emotionally due to receiving so many harsh judgements of my basic character? Right now I'm just gratefully accepting any kindness offered to me. I believe in forgive and forget.
But that may not be the best thing for public education about just how nasty autoimmune disease can get. As someone said to me about one of the people now being kind and gentle with me, "Where have they been all these years?"
I've seem this happen to other patients who receive an additional diagnosis which the public understands far more than autoimmune illness, as well as those who suffer injuries. Often someone will come to a group meeting and laugh and say something like "well now that I have a cast on my right arm everyone is rushing to help me, when it's the arthritis in my left shoulder that is producing the true agony which makes a few twinges from the injured arm seem like: NOTHING!"
Just points to ponder as I get ready to go to the dentist. An additional bill I will not be able to pay, not covered at all by my Medicare despite my really wicked case of Sjogren's Syndrome and having very weak teeth as a result of being a tetracycline baby.
Just another day in the USA.
Anyway...I'm getting a bit nervous. Waiting is stressful. I'm trying to put the whole scary how-far-has-this-cancer-gone thing out of my mind. There is a lot I have to try and get done before the surgery and I'm focusing on that. I'm also suffering from severe fatigue, the kind where you fall asleep in the middle of eating dinner, and that really is limiting the time I need to get anything done.
My biggest non-physical anxiety right now is financial...paying for the medical stuff I need. I had to spend way too much on over-the-counter stuff and copays and travel to medical facilities last year, with a large credit card balance as a result. The cancer has only increased the medical spending. I am permitted to receive help with medical stuff if it is structured properly. My mom and Don have helped me often, and others have helped me also when and in ways that they can. I am so grateful to all.
But my major donors, Mom and Don, are experiencing significant financial strain themselves now. Neither of them should be having me as their burden. Mom is a lot older than she looks! and Don is legally blind, having severely limited vision, and has no savings, not even for retirement. He also is facing a work slowdown in the near future, and is only getting part of the salary he used to have before he was laid off during the "Great Layoffs of Late '08".
Others who have helped me in the past have now lost their jobs or have other crises of their own. Thank you, The Great Recession. Of course my benefits continue to be cut, especially here in California, where the governor is seeking a special waiver to be able to reduce Medi-Cal (California's Medicaid) spending to an even lower amount than the federally mandated minimum. He had other options, but is choosing, basically, to kill people. It's hard to take.
The folks who make policy are aware that someone in my position can't add to their income, not only due to severe illness and Social Security Disability rules for SSDI, but also due to the way Medicare Part D was structured (with significant input from the pharmaceutical companies.) Now that I will most likely lose Medi-Cal eligibility entirely (recently I ended up being eligible only every other month) I'll have the 20% Medicare copays to deal with. I already have to pay the Medicare deductible, as well as the premium for Part B, which used to be covered by the state. My medical expenses could thus easily exceed my total income.
The policymakers by and large don't really care, at least some of those who proudly call themselves fiscally conservative. "Fiscally conservative" didn't always mean that letting fellow citizens die is ok, but then again I'm old enough to remember when there were people around who would tell me that back in the day they "Liked Ike!"
In a country where 45,000 people per year die due to lack of good access to health care, why should the New Right care if the number becomes 45,001 when I get my notice that I'm just collateral damage in the budget wars? Although politicians have been willing to rack up the deficit for things they consider to be important, like bonuses for the executives of failed companies, controversial wars, tax breaks for corporations who are already almost drowning in profits such as oil companies, etc., some seem to consider sick people to be expendable.
Anyway, I'm up shit creek financially and am reduced to begging. It is embarrassing, humiliating, guilt-inducing and sometimes I just want to give up and let the consequences of not being cared about by my country happen. But then I think about the individual politicians I have heard or seen who have come right out and said that people like me who are expensive medically should just go ahead and die. Like WE were responsible for the absurdly high cost of medical care in this country.
When I think about just myself I still feel like I'm just a throw-away human, due to rock-bottom low self-esteem, but when I think about others in my position it is then that I get angry. How dare they try to calculate the value of a life based on income received in a bat-shit crazy economic system? What is the value of a loving person, a giving person, a voice for positive change, an advocate for those who don't have money, someone who has a low income due to wanting to help others rather than make profits, someone who is a sunny presence in a home? What about the person in a family or neighborhood that everyone around talks to as if they were an unpaid counselor, or the creative person who brings art and beauty to our lives, or children who don't make money but who are our future, or seniors with so much history and wisdom to impart which don't make money but enrich or knowledge and understanding...the list goes on and on. If you don't know that a human being is more than just dollars and cents, you have a personality disorder. Please excuse yourself from making public policy.
And I also remember the pond scum, I mean, the people, who have told me I SHOULD die rather than use a dime of their precious tax money to stay alive. As if they could have made any money at all without the public goods they use every day, provided by the aggregate of everyone who pays taxes, including we poor people who still pay sales taxes and often disproportionate income tax. Well, then I want to live just to spite them, and be alive to advocate for more compassion as well as more common sense, and tell them to stop whining *like they tell us to do* and...suck it up.
I'm tired of blatant selfishness, greed, and narcissism, often in the name of Christianity, believe it or not. And yes I know people are working very hard, in many cases too hard because the economy is totally screwed up--but you know, I would give an awful lot to be able to work hard, without collapsing from illness and/or losing my health coverage.
I'm experiencing a lot more sympathy and caring from people now that I have cancer, and I really appreciate all of it...and actually NEED it to get through this. It feels like too much for me on top of all the other health problems I have.
But as is discussed so often in support group meetings for autoimmune disease, those of us with lupus et. al. are often expected to function just as we would if we were not horribly sick. And we wonder why what we are going through does not generate much sympathy or support.
There are some reasons for this. Like cancer, lupus is an invisible disease in many ways, but unlike cancer, it is still not as well known. Lupus does not usually have hugely funded public information campaigns or massive fundraising efforts that get wide media coverage. Lupus also varies from person to person and even a single patient has good days and bad days. This means that people have to do something that in our culture is very difficult: to believe the patient and trust that they are not malingering or using the illness to get attention, sympathy, disability payments that are not justified, etc.
We don't trust each other anymore. We suspect fraud and deception almost unconsciously. Even a small amount of fraud often gets massive newspaper headlines and this makes people justifiably angry. There aren't huge headlines talking about morbidity or even much about mortality from lupus or other invisible disabilities. We also are convinced there are a lot of self-centered people claiming illness to get attention. Well, for one thing, see above---autoimmune disease still doesn't generate a whole lot of community concern. And I do NOT have Munchausen Syndrome. I can easily think of many more enjoyable and far less costly things to do than wait around in uncomfortable rooms with other sick people and then be examined by health professionals. I think of those license plate holders like "I'd rather be sailing." Well, I'd rather be (insert 1000+ things here.)
Lupus can have many different symptoms which change from day to day and which vary so much between patients that it is almost as if each patient has a different disease.. Other rheumatic/autoimmune diseases are often like this as well. If someone knows of a person with a mild case, the expectations placed on someone with a severe case may well be completely unrealistic, but completely unknown to the person who is viewing the patient with a critical eye.
I will admit that I haven't had an easy time over the years in part because my sister has a (so far; please cross fingers, send good thoughts, pray for her) mild case of lupus and is also one of the hardest workers on the planet. There have been many comparisons, I assure you, between the one sister who is successful in so many life areas, a true superwoman, and the other fat thing living on disability payments as partially living off of other people who can't really afford it, such as my mom and Don. (And my sister who has lupus and her husband bought me a car--and if they hadn't, I would be in a world of trouble right now. Should they have HAD to do this? No way. My sis needs to take care of her family and her own health.) Of course by the inevitable comparison I look like...a selfish, lazy, unmotivated moocher who needs a big dose of the "Tough Love" which would most likely actually kill me.
The severe prejudice against overweight people does not help. Weight as a side effect from prednisone also varies from patient to patient, and even some physicians are still seemingly unaware of how the drug can not only increase appetite but affect the metabolism which remains affected despite attempts to diet and exercise. There are actually many in the medical field who are violently prejudiced against their overweight patients. I was shocked to see some of their comments once on a New York Times forum. "They get diabetes and liver problems and some cancers, and heart disease (I'm guilty on the first three; my heart disease has not yet been somehow related to obesity) and expect me to treat them when they won't even lose the weight; I'm sick of the sight of them." The fact that over 90% of diets fail escapes them. And exercise can be problematic for the ill or disabled or overworked with little leisure time.
I learned that I personally start losing weight when I go down to a level of 600 calories per day. And that left me so tired that I was fainting in public. I am the one who has to drive myself to all the medical stuff and I can't be passing out at the wheel. Also, the diabetes and possible liver disease and the anemia don't fare so well on 600 calories. I can't do it; it's not safe for me. I have to exercise and with the wicked arthritis the exercise that gets my heart rate up is swimming, which means access to a pool that is not so crowded as to be a severe danger to someone with immunosuppression. If someone can solve this problem, I'm all ears. Where I live right now I have access to a pool but I'm not sure what I will do if I move. And for most of my life I simply could not afford such access.
The tendency to make appearance-based judgements harms patients with mild disease as well as patients with severe disease. Patients with severe disease are encouraged or in some cases actually forced to push themselves beyond what is good for their health. In the US, where work is so highly valued, I frankly think most of us with severe disease are internally driven by sheer guilt to achieve activity levels far beyond what is safe for our disease state--often with the result of making the disease worse. Did I do this to myself, out of guilt for not succeeding the way I had hoped and planned to and promised I would do in my life? Oh, God. You betcha. I went to dangerous extremes and risked my life more than once.
As for those with mild disease, the praise they receive for their level of achievement and their own sense of accomplishment despite the diagnosis can easily tempt them into a lack of respect for the disease and what it COULD do. So they can fall into a pattern of overwork, ignoring precautions such as avoiding sun exposure for the photosensitive, skipping regular medical monitoring, skipping the rest periods they need, etc. And they can also end up making their disease worse, even sometimes crossing the border into severe disease. I've seen this happen over the years, so many times, as a support group leader. I've seen people die due to forgetting that lupus is nothing to fool around with.
So what to do with people who are suddenly being caring of me, who weren't so all the years that I was struggling physically, financially, and even emotionally due to receiving so many harsh judgements of my basic character? Right now I'm just gratefully accepting any kindness offered to me. I believe in forgive and forget.
But that may not be the best thing for public education about just how nasty autoimmune disease can get. As someone said to me about one of the people now being kind and gentle with me, "Where have they been all these years?"
I've seem this happen to other patients who receive an additional diagnosis which the public understands far more than autoimmune illness, as well as those who suffer injuries. Often someone will come to a group meeting and laugh and say something like "well now that I have a cast on my right arm everyone is rushing to help me, when it's the arthritis in my left shoulder that is producing the true agony which makes a few twinges from the injured arm seem like: NOTHING!"
Just points to ponder as I get ready to go to the dentist. An additional bill I will not be able to pay, not covered at all by my Medicare despite my really wicked case of Sjogren's Syndrome and having very weak teeth as a result of being a tetracycline baby.
Just another day in the USA.
Monday, December 28, 2009
Waiting for Godot, I mean surgery date
I've got one of those migraines of major doom. It started yesterday. It responded to Maxalt for some time but then returned. After three Maxalts I realized it would just keep boomeranging. I then took hydromorphone for the pain, as I am instructed to do. With my liver pain and liver enzymes elevated I didn't want to try Vicodin first as I usually do, since the liver doesn't care for the acetaminophen in Vicodin. People forget how hepatotoxic Tylenol can be...
I'm trying very hard not to take anything narcotic today because I really need to go to the post office to pay for my support group's PO box before year-end, pay a bill at the bank, and get some food that I can eat without totally spitting on one of my medical diets. But I haven't had a break in the migraine action long enough to feel safe driving even sans pain meds. I've been getting vertigo along with the nightmare pain. This thing basically has got to go.
Anyway. When asking about my preop appt. I found out my surgery is going to have to be pushed back due to a change in the doctor's schedule. So I no longer know my surgery date. I will still have tests in LA on the 2nd. I know the surgery will be at the very least a total hysterectomy with ovaries et. al. removed. I'm hoping it can be done laparoscopically due to my poor wound healing from immunosuppressive treatment for lupus as well as the diabetes. The tests on the 2nd will have some bearing on whether this is possible.
I really want to be held and kissed and comforted. But I've always been really stoic, at least on the outside, and I don't know if people really know that inside I'm an emotional vulnerable lonely gullible soft thing.
On the outside I can joke about adversity (having become somewhat used to it) and kick ass when I have to (an outer personality change that was painful and took a very long time but was totally necessary for survival starting with fighting for the diagnosis of my mystery disease, not hypochondria but: lupus.)
I didn't realize I had quite so many of the risk factors for this endometrial cancer of the uterus. I knew I was high-risk but not, I guess, megahigh risk! It all has to do with how much exposure to estrogen one has.
My collection of the risk factors include: starting my periods before age 12, never having been pregnant, irregular or possibly even no ovulation after starting Cell Cept for lupus treatment in 1997, diabetes, obesity (thank you so much, prednisone. Oh yes, you are life-saving in lupus, but you come with quite a price in side effects), possible PCOS .
I'm really glad my new gynecologist did a biopsy of the uterus instead of relying on my normal PAP smear. PAP is for cancer of the cervix, not the endometrium of the uterus.
Why won't this migraine GO AWAY? I need to do laundry and answer a backlog of email. This is so frustrating. Vamoose, migraine! Abracadabra!
I'm trying very hard not to take anything narcotic today because I really need to go to the post office to pay for my support group's PO box before year-end, pay a bill at the bank, and get some food that I can eat without totally spitting on one of my medical diets. But I haven't had a break in the migraine action long enough to feel safe driving even sans pain meds. I've been getting vertigo along with the nightmare pain. This thing basically has got to go.
Anyway. When asking about my preop appt. I found out my surgery is going to have to be pushed back due to a change in the doctor's schedule. So I no longer know my surgery date. I will still have tests in LA on the 2nd. I know the surgery will be at the very least a total hysterectomy with ovaries et. al. removed. I'm hoping it can be done laparoscopically due to my poor wound healing from immunosuppressive treatment for lupus as well as the diabetes. The tests on the 2nd will have some bearing on whether this is possible.
I really want to be held and kissed and comforted. But I've always been really stoic, at least on the outside, and I don't know if people really know that inside I'm an emotional vulnerable lonely gullible soft thing.
On the outside I can joke about adversity (having become somewhat used to it) and kick ass when I have to (an outer personality change that was painful and took a very long time but was totally necessary for survival starting with fighting for the diagnosis of my mystery disease, not hypochondria but: lupus.)
I didn't realize I had quite so many of the risk factors for this endometrial cancer of the uterus. I knew I was high-risk but not, I guess, megahigh risk! It all has to do with how much exposure to estrogen one has.
My collection of the risk factors include: starting my periods before age 12, never having been pregnant, irregular or possibly even no ovulation after starting Cell Cept for lupus treatment in 1997, diabetes, obesity (thank you so much, prednisone. Oh yes, you are life-saving in lupus, but you come with quite a price in side effects), possible PCOS .
I'm really glad my new gynecologist did a biopsy of the uterus instead of relying on my normal PAP smear. PAP is for cancer of the cervix, not the endometrium of the uterus.
Why won't this migraine GO AWAY? I need to do laundry and answer a backlog of email. This is so frustrating. Vamoose, migraine! Abracadabra!
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About Me
- Beep
- I've travelled the distance from an Ivy League college to decades of enforced poverty--because I've needed to qualify for government health care in the U.S., since being diagnosed with lupus at the age of 23. I have a personal blog at http://beepbeep.livejournal.com that I've had so long I'm probably stuck with :) My other blogs are here on blogger...