August was really busy because I moved, and of course the physical part of moving was an exhausting daily project. And I'm not finished with it yet!
At the end of August, I developed a GI problem. Diarrhea, usually severe, as well as nausea and vomiting. Daily.
I must have been very ill, because I even lost weight, something that just doesn't happen to me since prednisone packed on the pounds years ago. I can be at death's door, refusing food, and still my body is convinced that fat must be preserved for an imaginary famine.
Anyway, this mystery thing made me very sick, and very weak. I had quite a few falls. I cracked my ribs. I may still have a jaw injury to deal with.
I could only survive on enough OTC Imodium to most likely raise the stock price of it, as well as prescription ondandsetron. I saw several doctors, and was seen in ERs several times as well.
My genius rheumatologist seems to have thrown a lightning bolt to the thing, improving me enough to give me my life back. I was surprised, since this is out of his specialty area. I saw him December 9 and have been working on catching up with months worth of communications and responsibilities ever since! Dr. Wallace had better not retire during my lifetime, is all I can say,
Looks like I might be able to make a blog entry once in awhile, now :)
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
Dear Stubborn Five-day Migraine,
I will enjoy the Christmas season despite you. I've certainly ignored far worse health stuff at Christmas. You are just amateur misery. Suck it up.
Tuesday, August 24, 2010
I am so tired I am about to drop
Except the problem is...I did drop. This entry is a reminder to myself to talk about this when I've had at least some sleep or a coffee or something. In the meantime, be careful out there. Avoid falls.
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.
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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...
