or: How Fit Can a Cripple Get?
This year I had four goals to work on, and have made sufficient progress on two of them. So maybe I can only work on two life altering goals at a time. That is still pretty good, I think. Fitness was one that I failed miserably this year, and I cannot really afford that kind of mistake. You know?
I have successfully completed exercise programs before I was super sick, but was on the sick track and was not aware that all the little things were going to add up to big, systemic, life altering problems. It was hard, and I had failed at some before and since, but all the adults in the household were on the same workout bandwagon that one good time, and that helped a ginormous amount.
The pillars of fitness are more like spinning plates for sick folks like me. Figuring out what you need to work on can involve consulting with multiple doctors and maybe a physical/occupational therapist or two. I cannot afford to do exercises that may help one thing but make another worse. Habit is nearly impossible because one never knows when a flare is coming on, how long it will last, if a flare is coming on will activity activate it? Some flares you can still get some things done, but some flares are incapacitating. All of this can make progression nearly impossible.
Caring about my health is a no brainer when I spend my days trying to piece together enough strands of healthiness to get by each day. I find that I am much more aware and connected to how my body is doing every day that non-sick/able-bodied folks. They seem to be able to get through a day without checking in with their bodies and their health. Hell, I have to check each day to see if I have a doctor appointment!
How do I even measure fitness in this physical miasma? Will having stronger, tones muscles give me the type of health I will need to fight my health issues as I age? Heart healthiness always sees good, but sometimes stairs wind me and bad balance days can make a simple, one story staircase a nightmare of risk and cost benefit analysis. Well, I am going to start at just trying to do something and go from there.
So, as you can see, returning to a good level of fitness is not going to be an easy task. I am doing what I can to remove obstacles I have put in my own way, like smoking and a sense of futility. But I think it is going to take a lot more than that. Getting more fit is going to be one of the things on my New Year's resolutions. Again. But I think I have a better shot at it this time. Hell, my smoking is... well, I will tell you about my smoking here soon. Last year's list is going out 2 for 4, so I call my odds pretty good, maybe even... even.
I am PatientC. Welcome! This is a disability oriented blog where issues and intersection are discussed at my whim and with varying degrees of humanity, snark, and intensity. Content can be adult at times, farcical at others.
Showing posts with label lupus. Show all posts
Showing posts with label lupus. Show all posts
Thursday, December 5, 2013
Wednesday, November 6, 2013
PatientC Manifest
Welcome to me: the me before I even get up, the base physical me, the challenges in my day, and what I conquer, compromise, and coddle to get to you, Dear Reader.
There is the whole lupus/SLE thing. Because of two disagreeing rheumatologists, I am not currently on Plaquenil, which did help somewhat. This mess brought to you by a gutless GP (now out of the country, I think) that refused to override one of the two rheumys. This has been a cluster fuck since it started and I am just not surprised by crap like this anymore. We are treating some of the pain brought on by lupus, and I go take steroids during flares. Note: this should get taken more seriously now that my brother has been affirmatively diagnosed with lupus/SLE as well.
The fibromyalgia thing came along later, and I take an anti-seizure med to calm down the fibro spots and the electric pain that runs up and down my back (I envision my spine & back as being a big Tesla coil type thing when this pain is uncontrolled.)
These two alone can cause brain fog/cognitive dysfunction, fatigue, loss of memory, boatloads of pain, et al. They, and some of the following, are exclusionary diagnosis, which is a hell no on should ever suffer.
Even later came the irritable bowel syndrome/IBS thing. This is even more of a social life killer than the other two. While all three can have flares (and sometimes set each other off, what fun!), IBS flares usually keep me within ten feet of an accessible bathroom. So it is also horribly life changing but one of the more difficult things to talk about. USians are so weird about bathroom habits, we do not even have the language to discuss this well. I take an anti-spasmodic for this, to keep my guts from churning too fast.
In between the last two we found carpal tunnel syndrome. I had open carpal tunnel surgery last year, and while recovery was difficult (the family made it much easier than it could have been for me), the recovery from it was complete. Since then it has gotten worse in my left hand, and we found ulnar entrapment in both my hands. As this stuff progresses, I will need to get opened up again.
About five years ago we found bulging/herniated disks in my back. These have now gotten worse and I just found out that there is now spinal stenosis and arthritis happening in my spine. I have started using a TENS unit to manage that pain. It works, but since it does not do anything for the problem causing the pain, it comes back after use: a day or two if I am taking it easy, later that day if I am trying to get stuff done. Next week I will have steroids injected into my spine to try to manage this more effectively and help with the hyper-mobility and hypo-mobility that seem to be associated with the diagnosed problems (hopefully they are not new ones!).
All of that mess means that I take both pain meds and a muscle relaxer. They help, they do. No day is pain free - no day will likely ever be pain free. That is not even the goal anymore. This past year I have put on some weight. Moving hurt, I started moving less. When I moved less, I burned less calories. This situation has actually caused better pain management, so... umm... silver lining? Not really, but I am glad to do something about it.
Some genius decided I was depressed. While depression is often a valid diagnosis, I still argue that I am angry, grieving, in constant physical pain, downright sad... I still view depression as unreasonable sadness, morose without source. I am taking an mild anti-depressant anyhow, because if you do not, then they see you as "non compliant" and that greatly changes how every doctor sees you and treats you. Until they have little time capsules you can swallow and go back and make good diagnosis early, this will probably remain a problem of various intensity.
I am also avoidant, which combined with the lupus/fibro/IBS means that stupid social bullshit literally makes me sick. Stress can throw me into Flaresville if managed badly or unmanageable. I resent the hell out of that, but my resentment does not, can not make it any less true. I internally debate if it is ableist to get shitty with me for protecting my own mental health in cases of social stupidity. Take that definition with a grain of salt, though - it is not as rare as you might think to be a avoidant public personality. **cough** I could explain that, but I feel like I already screwed up telling some folks that I am avoidant in the first place. I have a med to take when I am getting too stressed, although it has a sedating quality, so I try to avoid it.
I think I am almost done.
I have been hypoglycemic for two decades, controlled through diet.
I have a handful of allergies that make medical life difficult. One of them causes anaphylactic shock and can cause death all by itself.
I take vitamins, but have to take Vitamin D3 for a deficiency and I take a separate calcium supplement to help guard against the years of steroids I will have taken should I be lucky enough to grow old.
I have an unexplained spot on cranial MRIs that we stopped monitoring after four or so years of watching it.
I had a full (minus one ovary) hysterectomy due to ovarian cysts and unmanageable chronic primary dysmenorrhea (super awful menstrual syndrome). We did not know I likely had an illness that, when treated, could have made this more manageable.
I had my tonsils removed as an adult, because we did not understand why I was getting step/not strep six times a year. We did not know I likely had an illness that, when treated, could have made this more manageable. Again.
I used to have a handful of kidney/UTI trouble. I almost lost a kidney in grade
school because I did not run the fever they expected and so no one treated me. My low body temp/fevers plagues me even still.
Oh, and there is the TMJ thing, which I only notice when it is really bad. Couple that with really soft teeth, a really dry, small mouth, and you have a recipie for disaster. Anyone that tells you that dental insurance is not as necessary as health coverage is lying through their... whatever. On the up side, my dentist is all kinds of awesome. He makes sure that everyone in the office clinic treats all of us patients like we have cadillac plans. They are amazing. Which is good, because whenever I can use a dentist, I go to the dentist. Senator Bernie Sanders is the only person with visibility talking about the dental catastrophe that is happening in the US and working to help it.
And the migraines. Wow, the migraines sometimes...
Welcome to my body. This is all before I get out of bed every day. Make no mistake: this is not a litany of woes. Well, maybe it is, but you do not see a single "poor me" or anything like that. This post is not a complaint, it is just what I deal with every damn day.
(Wow, that was longer than I thought it would be. One day, maybe, I will go ahead and tell you how I got here, to you, Dear Reader.)
There is the whole lupus/SLE thing. Because of two disagreeing rheumatologists, I am not currently on Plaquenil, which did help somewhat. This mess brought to you by a gutless GP (now out of the country, I think) that refused to override one of the two rheumys. This has been a cluster fuck since it started and I am just not surprised by crap like this anymore. We are treating some of the pain brought on by lupus, and I go take steroids during flares. Note: this should get taken more seriously now that my brother has been affirmatively diagnosed with lupus/SLE as well.
The fibromyalgia thing came along later, and I take an anti-seizure med to calm down the fibro spots and the electric pain that runs up and down my back (I envision my spine & back as being a big Tesla coil type thing when this pain is uncontrolled.)
These two alone can cause brain fog/cognitive dysfunction, fatigue, loss of memory, boatloads of pain, et al. They, and some of the following, are exclusionary diagnosis, which is a hell no on should ever suffer.
Even later came the irritable bowel syndrome/IBS thing. This is even more of a social life killer than the other two. While all three can have flares (and sometimes set each other off, what fun!), IBS flares usually keep me within ten feet of an accessible bathroom. So it is also horribly life changing but one of the more difficult things to talk about. USians are so weird about bathroom habits, we do not even have the language to discuss this well. I take an anti-spasmodic for this, to keep my guts from churning too fast.
In between the last two we found carpal tunnel syndrome. I had open carpal tunnel surgery last year, and while recovery was difficult (the family made it much easier than it could have been for me), the recovery from it was complete. Since then it has gotten worse in my left hand, and we found ulnar entrapment in both my hands. As this stuff progresses, I will need to get opened up again.
About five years ago we found bulging/herniated disks in my back. These have now gotten worse and I just found out that there is now spinal stenosis and arthritis happening in my spine. I have started using a TENS unit to manage that pain. It works, but since it does not do anything for the problem causing the pain, it comes back after use: a day or two if I am taking it easy, later that day if I am trying to get stuff done. Next week I will have steroids injected into my spine to try to manage this more effectively and help with the hyper-mobility and hypo-mobility that seem to be associated with the diagnosed problems (hopefully they are not new ones!).
All of that mess means that I take both pain meds and a muscle relaxer. They help, they do. No day is pain free - no day will likely ever be pain free. That is not even the goal anymore. This past year I have put on some weight. Moving hurt, I started moving less. When I moved less, I burned less calories. This situation has actually caused better pain management, so... umm... silver lining? Not really, but I am glad to do something about it.
Some genius decided I was depressed. While depression is often a valid diagnosis, I still argue that I am angry, grieving, in constant physical pain, downright sad... I still view depression as unreasonable sadness, morose without source. I am taking an mild anti-depressant anyhow, because if you do not, then they see you as "non compliant" and that greatly changes how every doctor sees you and treats you. Until they have little time capsules you can swallow and go back and make good diagnosis early, this will probably remain a problem of various intensity.
I am also avoidant, which combined with the lupus/fibro/IBS means that stupid social bullshit literally makes me sick. Stress can throw me into Flaresville if managed badly or unmanageable. I resent the hell out of that, but my resentment does not, can not make it any less true. I internally debate if it is ableist to get shitty with me for protecting my own mental health in cases of social stupidity. Take that definition with a grain of salt, though - it is not as rare as you might think to be a avoidant public personality. **cough** I could explain that, but I feel like I already screwed up telling some folks that I am avoidant in the first place. I have a med to take when I am getting too stressed, although it has a sedating quality, so I try to avoid it.
I think I am almost done.
I have been hypoglycemic for two decades, controlled through diet.
I have a handful of allergies that make medical life difficult. One of them causes anaphylactic shock and can cause death all by itself.
I take vitamins, but have to take Vitamin D3 for a deficiency and I take a separate calcium supplement to help guard against the years of steroids I will have taken should I be lucky enough to grow old.
I have an unexplained spot on cranial MRIs that we stopped monitoring after four or so years of watching it.
I had a full (minus one ovary) hysterectomy due to ovarian cysts and unmanageable chronic primary dysmenorrhea (super awful menstrual syndrome). We did not know I likely had an illness that, when treated, could have made this more manageable.
I had my tonsils removed as an adult, because we did not understand why I was getting step/not strep six times a year. We did not know I likely had an illness that, when treated, could have made this more manageable. Again.
I used to have a handful of kidney/UTI trouble. I almost lost a kidney in grade
school because I did not run the fever they expected and so no one treated me. My low body temp/fevers plagues me even still.
Oh, and there is the TMJ thing, which I only notice when it is really bad. Couple that with really soft teeth, a really dry, small mouth, and you have a recipie for disaster. Anyone that tells you that dental insurance is not as necessary as health coverage is lying through their... whatever. On the up side, my dentist is all kinds of awesome. He makes sure that everyone in the office clinic treats all of us patients like we have cadillac plans. They are amazing. Which is good, because whenever I can use a dentist, I go to the dentist. Senator Bernie Sanders is the only person with visibility talking about the dental catastrophe that is happening in the US and working to help it.
And the migraines. Wow, the migraines sometimes...
Welcome to my body. This is all before I get out of bed every day. Make no mistake: this is not a litany of woes. Well, maybe it is, but you do not see a single "poor me" or anything like that. This post is not a complaint, it is just what I deal with every damn day.
(Wow, that was longer than I thought it would be. One day, maybe, I will go ahead and tell you how I got here, to you, Dear Reader.)
Tuesday, October 29, 2013
QuickHit: Beyond Lupus
I have no long, rambling entry today, but I do have something to share:
The Embody program: Beyond Lupus.
The Boyfriend heard mention of it on a television commercial (I think). You may also hear it referred to as Rethink Lupus. The website contains an initial screening for a clinical trial of a drug called Epratuzumab. Do not dare ask me how to pronounce it, I have no idea!
There is a ten minute or so screening questionnaire on the web site. I like this because we can determine if I should bother going to a participating facility. Lupus/SLE can make that difficult, especially during flares. They also tell you the closest joint you can use to participate. You do want to have things like a med list, date of onset, other illnesses and that sort of thing when you sit down to fill it out.
The trial is a year, and there is the potential for later entries. There may also be a two year extension where everyone gets the drug after the trial, which will be super great if it does what it is supposed to do (bind to a protein on mature, malignant B cells in the immune system and get them to quit making a mess of your life, as I understand it).
It is important, in general, for people to take part in clinical trials so that we can get good drugs into the market and to people that need it. That is not just glurge designed to get you to sign up, it is also true. You do need to be fully informed of risks and benefits, and I intend to be so informed before I sign on for this.
I do not know how the trial will go, if I will actually participate, if I can say anything about it to you here if I do, or anything much yet. But as a chance to get better, or at least help get a drug out there that can help somebody, I feel like I have to try. And it is exciting to be faced with the idea of changing this up and trying something that may make that real difference you and I need.
The Embody program: Beyond Lupus.
The Boyfriend heard mention of it on a television commercial (I think). You may also hear it referred to as Rethink Lupus. The website contains an initial screening for a clinical trial of a drug called Epratuzumab. Do not dare ask me how to pronounce it, I have no idea!
There is a ten minute or so screening questionnaire on the web site. I like this because we can determine if I should bother going to a participating facility. Lupus/SLE can make that difficult, especially during flares. They also tell you the closest joint you can use to participate. You do want to have things like a med list, date of onset, other illnesses and that sort of thing when you sit down to fill it out.
The trial is a year, and there is the potential for later entries. There may also be a two year extension where everyone gets the drug after the trial, which will be super great if it does what it is supposed to do (bind to a protein on mature, malignant B cells in the immune system and get them to quit making a mess of your life, as I understand it).
It is important, in general, for people to take part in clinical trials so that we can get good drugs into the market and to people that need it. That is not just glurge designed to get you to sign up, it is also true. You do need to be fully informed of risks and benefits, and I intend to be so informed before I sign on for this.
I do not know how the trial will go, if I will actually participate, if I can say anything about it to you here if I do, or anything much yet. But as a chance to get better, or at least help get a drug out there that can help somebody, I feel like I have to try. And it is exciting to be faced with the idea of changing this up and trying something that may make that real difference you and I need.
Friday, June 7, 2013
If Self Improvement is Masterbation...
I have not written much about me personally lately. I shy away from that sort of thing when I am stressed. So here is what is going on with me and mine for the folks that are interested. All of this is happening with tons of help from the family, particularly the Menfolk. I would still be splashing in a miasma of good intent, stalled efforts, and drama without their support.
So if I get through today the same, this will be my first week at under 12 cloves a day. Or 12 cigarettes or under, but I hope for the former. While the eCigs are a wonder and I am using them frequently, I do think I am cutting down on my overall nicotine intake. I do not know if I will keep moving on nicotine reduction once I have the cigs kicked. Nicotine itself is not a health concern for me right now, and I am not sure that it should be one.
"Once I have the cigs kicked" - I was not sure I would ever seriously use those words, but I just did. Woot!
My avoidance is not so bad when I stay in contact with people that reciprocate my caring and love for them. So I am using my emergency med less. But I prefer to take it when people stress is building and neither practical methods (STFU, GTFO, etc...) nor internal coping mechanisms are cutting it. If you are familiar with autoimmune illnesses like lupus/SLE, you know that other people's bullshit can literally make us lupies physically ill by stressing us into Flare's Ville. I do not talk about that much because people can be awful, but fuck it: that is the state of things.
For about a year, with lupus in full effect but we were still unaware that it was there: I was stressing myself into the ER or a hospital room about once a month with a combination of physical and emotional stress. I just cannot let people do that to me anymore - what if the next flare convinces my immune system that my kidneys have become enemies and should be destroyed? I had to kick the part of myself that comes from abuse and neglect and remind her that she and I do not take shit anymore.
I have cut back on my caffeine, especially Red Bull. Now, I still drink a lot of it, there was just plenty of room for improvement. That and more generally weight reduction will not be a focus until the smoking thing is done, before the end of the year I hope.
We are starting the Medical Mystery business that is my life back up again. Hopefully we can get some answers on the stuff that is not under the umbrella of lupus/SLE or fibro.
We are going to do more meditation at home and plan on going to more open sittings and the stuff we can afford to do with the local Buddhist group we met this spring.
I am working on writing more and actually putting it out there. I am getting better at actually posting what I write when I write it. I am also making time to write whenever I have the bug instead of letting it wait 'til I get back to my desk.
So, what sort of self improvement are you engaged in now? Is it working? Thanks for stopping by, I appreciate it!
 |
| Umbra does not care if this post gets finished. |
So if I get through today the same, this will be my first week at under 12 cloves a day. Or 12 cigarettes or under, but I hope for the former. While the eCigs are a wonder and I am using them frequently, I do think I am cutting down on my overall nicotine intake. I do not know if I will keep moving on nicotine reduction once I have the cigs kicked. Nicotine itself is not a health concern for me right now, and I am not sure that it should be one.
"Once I have the cigs kicked" - I was not sure I would ever seriously use those words, but I just did. Woot!
My avoidance is not so bad when I stay in contact with people that reciprocate my caring and love for them. So I am using my emergency med less. But I prefer to take it when people stress is building and neither practical methods (STFU, GTFO, etc...) nor internal coping mechanisms are cutting it. If you are familiar with autoimmune illnesses like lupus/SLE, you know that other people's bullshit can literally make us lupies physically ill by stressing us into Flare's Ville. I do not talk about that much because people can be awful, but fuck it: that is the state of things.
For about a year, with lupus in full effect but we were still unaware that it was there: I was stressing myself into the ER or a hospital room about once a month with a combination of physical and emotional stress. I just cannot let people do that to me anymore - what if the next flare convinces my immune system that my kidneys have become enemies and should be destroyed? I had to kick the part of myself that comes from abuse and neglect and remind her that she and I do not take shit anymore.
I have cut back on my caffeine, especially Red Bull. Now, I still drink a lot of it, there was just plenty of room for improvement. That and more generally weight reduction will not be a focus until the smoking thing is done, before the end of the year I hope.
We are starting the Medical Mystery business that is my life back up again. Hopefully we can get some answers on the stuff that is not under the umbrella of lupus/SLE or fibro.
We are going to do more meditation at home and plan on going to more open sittings and the stuff we can afford to do with the local Buddhist group we met this spring.
I am working on writing more and actually putting it out there. I am getting better at actually posting what I write when I write it. I am also making time to write whenever I have the bug instead of letting it wait 'til I get back to my desk.
So, what sort of self improvement are you engaged in now? Is it working? Thanks for stopping by, I appreciate it!
Monday, May 20, 2013
Is there Cake? I Was Told...
Or: Is diagnosis fatigue a thing? I do not want another thing...
Do not be surprised if posts that are not particularly timely start showing up as I attempt to clean up my drafts with a “put it up or dump it” eye. Except the Angel Pillows piece. It makes me shudder, but I need to do it. Sometime. Dammit.
I have to do something to not feel useless sitting in my office chair to re-situate my SI Joint Dysfunction. That mostly looks like doing nothing and can rapidly deteriorate into actually doing nothing. Well, or what other folks might call nothing but I call Internet Rabbit Hole/Tabspolsion Learning Time!
I recently realized that after the first couple diagnosis I received, after the first couple of dozen prescriptions and recommendations and all of that - I stopped being Super Learning Gimp. I did not just quit caring, but it got kind of numb. Whatever. What does this mean? What do I have to do? What do I have to take? Will it get better?
Is there like, cake, for people that get long lists of unspecific symptoms diagnosis? Because I am really hoping there is cake because this fucking sucks. I did plenty of testing, where is the cake?
Come home and say “looks like they think I have blargity blarg.” They ask what they can do at home, because my family is awesome, but they kind of get the blank slump I get now too. Then we just kind of sit and commiserate in the suck for a little bit and move on with this new word in our lives.
Ask the pharmacist to check for interactions because I can fucking care less at this point. Sure.
Wait for the referral call for the specialist which will do one of two things: tell me they cannot help me and bounce me back to my GWP, or start running tests and writing more Rxs and suggesting life changes. Whatever. All of which I will heed, it is just rare to care about it anymore. Or maybe not care, but have an emotional reaction other than the mild cry I am sure to have that night.
Which is why I hardly ever mention the recent (months ago) IBS thing that came up. Yeah, my body party was not rocking enough, you know? Heh. And I lost coverage just as that was getting started, so I have an Rx and some advice on life changes and that’s it. Other than what it does to my every fucking day and life in general, it’s actually kind of hard to care about it specifically, at this point, you know?
Seriously, where is the cake?
What is this morning? Lupus flare? Fibro spots giving me daggers today? Tesla coil -esque electric charges up my back? Joints upset over the lingering weather pressure border turning my Human Barometer status into a nightmare? Can I stay more than 15 feet away from the bathroom today? This week? Do I have spatial coordination today? Will I need my cane or my chair if I have to go out? Can I go out if I have to go out? What is the definition of “must” today? How are the headaches? Big today?
What is an adequate day under these standards?
Take up the standard "dress to play even if you know you will be on the bench." Get dressed every day, because not is a tacit acknowledgement that the world spins without you, and even on days you are okay with this fundamental fact, other people expect you to be as not okay with it as they are with the idea regarding themselves.
Fucking hellooooo! Where is the damn cake?
Tuesday, March 19, 2013
Have You Seen Me Lately?
Yes, I am trying to be back here more often. This is a quick note to let you I had a good time hanging out with Rodimus Prime and SayDatAgain on their show, The Black Guy Who Tips. We talked about me and disability, about being pervy and poly - it was one of the better conversations I have enjoyed lately.
You can, and should go see it here: Spreecast, iTunes. You are missing out if you do not!
I was really happy with how Rod and Karen interviewed, they have a good touch on the ebb and flow of a conversation - a lot people really struggle with that, but not these folks. They talked about the topics with curiosity, some study (wow, rare, thanks, hurrah!), and an overall respect that made me feel really comfortable for the hour we talked! I hope that they feel I respected their home turf and treated it well.
Again, I apologize for not being able to hang out after, I had to get some sleep (I had not before the show, Rod knows what I am talking about!). I listened later and it was all fun!
(I tested these links, but my cache may keep me from seeing some errors. Let me know if you have any issues!)
You can, and should go see it here: Spreecast, iTunes. You are missing out if you do not!
I was really happy with how Rod and Karen interviewed, they have a good touch on the ebb and flow of a conversation - a lot people really struggle with that, but not these folks. They talked about the topics with curiosity, some study (wow, rare, thanks, hurrah!), and an overall respect that made me feel really comfortable for the hour we talked! I hope that they feel I respected their home turf and treated it well.
Again, I apologize for not being able to hang out after, I had to get some sleep (I had not before the show, Rod knows what I am talking about!). I listened later and it was all fun!
(I tested these links, but my cache may keep me from seeing some errors. Let me know if you have any issues!)
Wednesday, November 21, 2012
Two Words
The following is a flare rant I wrote about a month ago, and then promptly forgot about because I was flaring. So here you go, and at the bottom I ask you for your flare advice.
Fucking. Flare.
Seriously. Thursday I missed my physical therapy, and that makes me feel about two inches tall. This is because it is low/no income and that means that someone else in my position or worse could have used that slot if I had been able to cancel earlier. This is a traveling teaching group, so when you miss an appointment not only could someone else have used the slot, but there are P/T students there that need to learn that are also going without what they need.
On the up side, they used the hour to learn more about lupus, fibro, and my upcoming wrist surgery and how all those things can impact physical therapy, not just for me but in general. Which is awesome! I have actually apologized to the students for being so complicated, but the lead P/T said to never do that, that patients in real life are always complicated.
I am going to talk to my physical therapist and find out more about how one can access low/no income therapy like this, because I think it is very important.
Hate. Flares. My physical ability goes out the window. I have a wicked Flowers for Algernon thing going on while I flare. It touches everything I touch, and I resent the hell out of it. Lately, though, I am trying to lean into experiences and really be there and understand, but flares just suck so god damn hard.
This seems to be a mini flare, which hopefully means it will only last about a week or so. So, umm, hurrah?
When a flare happens, I try to cut down on anything that the flare could ruin. Say, if I have an appointment or need to make an important phone call I will do what I can to put it off until the flare is gone because my cognitive ability goes right out the window. Delicate repairs or mending are definitely off my To Do lists. Sex can be a downright mess if it is the fibro that is acting up. I try to keep my focus narrow and easy to cut down on both outward mistakes and inward strife.
What do you do when you flare? What do you put off, what do you muddle through?
Fucking. Flare.
Seriously. Thursday I missed my physical therapy, and that makes me feel about two inches tall. This is because it is low/no income and that means that someone else in my position or worse could have used that slot if I had been able to cancel earlier. This is a traveling teaching group, so when you miss an appointment not only could someone else have used the slot, but there are P/T students there that need to learn that are also going without what they need.
On the up side, they used the hour to learn more about lupus, fibro, and my upcoming wrist surgery and how all those things can impact physical therapy, not just for me but in general. Which is awesome! I have actually apologized to the students for being so complicated, but the lead P/T said to never do that, that patients in real life are always complicated.
I am going to talk to my physical therapist and find out more about how one can access low/no income therapy like this, because I think it is very important.
Hate. Flares. My physical ability goes out the window. I have a wicked Flowers for Algernon thing going on while I flare. It touches everything I touch, and I resent the hell out of it. Lately, though, I am trying to lean into experiences and really be there and understand, but flares just suck so god damn hard.
This seems to be a mini flare, which hopefully means it will only last about a week or so. So, umm, hurrah?
When a flare happens, I try to cut down on anything that the flare could ruin. Say, if I have an appointment or need to make an important phone call I will do what I can to put it off until the flare is gone because my cognitive ability goes right out the window. Delicate repairs or mending are definitely off my To Do lists. Sex can be a downright mess if it is the fibro that is acting up. I try to keep my focus narrow and easy to cut down on both outward mistakes and inward strife.
What do you do when you flare? What do you put off, what do you muddle through?
Wednesday, October 31, 2012
ProPatient Rides Again!
I am in ProPatient mode again! So we will have a lot to talk about. I find myself, more than anything else, going to see labcoats when I go out. I have the patient versus consumer philosophical discussion fairly often both out loud and in my head. I am sharing personal information with strangers a lot, and you know how much I enjoy that sort of thing.
I have a lot in my head about medical information: how it is shared, used, what direct input I have as a patient, all that sort of thing. I think that this is a terribly important thing tha we almost never discuss, and I want to be a part of fixing that problem.
I am going to have open carpal tunnel surgery here soon. I am in PT for my back, which is a necessary step to get the insurance to do something for my bulging disks, but we are getting a lot of other work done. One rheumatologist has confirmed lupus, another calls fibromyalgia, my GP and I think that, sadly, they are both correct. I am cutting down on caffeine and cigarettes. Or trying to, anyway.
Since the carpal tunnel surgery is coming up first, it is what I am preparing for the most. I am beyond aprehensive about losing the use of my dominant hand for a while. And hey, if you know of any low cost or free speech to text software, I would greatly appreciate knowing about it! Please share it below.
This has triggerd a long delayed house reorganization. The basement is undergoing the worst of it, because it had become a place to simply store things, and the ablity to work there was lost in piles of stuff. The same was true for my desk: it was buried in all kinds of paperwork not deemed an emergency at the time.
Of course, politics have been formost in my mind as I go through all of this, and the discussions of entitlements and the Affordable Care Act have emphasized the truth: politics are real life! And we need to talk about them. Here, politics are life and death and quality of life.
I have a lot in my head about medical information: how it is shared, used, what direct input I have as a patient, all that sort of thing. I think that this is a terribly important thing tha we almost never discuss, and I want to be a part of fixing that problem.
I am going to have open carpal tunnel surgery here soon. I am in PT for my back, which is a necessary step to get the insurance to do something for my bulging disks, but we are getting a lot of other work done. One rheumatologist has confirmed lupus, another calls fibromyalgia, my GP and I think that, sadly, they are both correct. I am cutting down on caffeine and cigarettes. Or trying to, anyway.
Since the carpal tunnel surgery is coming up first, it is what I am preparing for the most. I am beyond aprehensive about losing the use of my dominant hand for a while. And hey, if you know of any low cost or free speech to text software, I would greatly appreciate knowing about it! Please share it below.
This has triggerd a long delayed house reorganization. The basement is undergoing the worst of it, because it had become a place to simply store things, and the ablity to work there was lost in piles of stuff. The same was true for my desk: it was buried in all kinds of paperwork not deemed an emergency at the time.
Of course, politics have been formost in my mind as I go through all of this, and the discussions of entitlements and the Affordable Care Act have emphasized the truth: politics are real life! And we need to talk about them. Here, politics are life and death and quality of life.
Friday, June 8, 2012
Where Have I Been?
Hallo. It has been a while, but you and this blog have never been far from my mind. Unfortunately, all of my current drafts of pieces to share with you look like trash right now. I have been quite distracted. The kids have needed help. Minion One and I are both dealing with new diagnosis (and the same med for each of us!). Minion Two's birthday was last week! I have been sick (surprise!). It has been busy and disorganized here. Sigh.
This month the Husband and I will celebrate our sixteenth wedding anniversary. Woot! And we have been together twenty. Suck it, everyone that thought (and especially those that said) we would not last!
This year our poly family has been in our current configuration for ten years. More woot!
I almost have the silver hair I have wanted since junior high! After salons told me they could not do it, it could not happen. After a beautician that was a family friend said she could do it but never did. After all that, my bald Boyfriend amalgamated a bunch of instructions and anecdotes. We got the tools and the chemicals, the bleach (although they call it "lightener" now) and the wash. The process was long and hard to sit through. The Boyfriend was nervous. I was anxious. The wash took everywhere but where I needed the "lightener" the most. So one more sitting and I will have all silver hair. Down to my ass silver hair will be mine! Oh, yes, it will be mine...
So it looks like I have IBS (irritable bowel syndrome). I am on a med I have to take before I eat, and other than some diet advice, I am kind of floundering. Thanks to a walking, talking personification of awesome on G+, I feel more capable of dealing with this. So thanks a bunch!
This lupus/fibro thing has been kicking my ass lately. I wasted through part of the winter and then put that weight plus ten pounds back on super quickly.
We are battening down the hatches for the end of the school year. I have put together a earned/pledged privilege system. And I am making plans to do more things with the Minions, rather than let the summer slip by without doing something sometimes. Movies, video games together, working in the yard, napping - I want together time before they are too busy for their 'rents, you know?
Toe shoes - they rock. I lucked into some, and I will be talking about them.
I will be talking about the games that I have played recently, all the political stuff going on and how it may change lives like mine and my family. There is so much going on and I want to share it with you.
This month the Husband and I will celebrate our sixteenth wedding anniversary. Woot! And we have been together twenty. Suck it, everyone that thought (and especially those that said) we would not last!
This year our poly family has been in our current configuration for ten years. More woot!
I almost have the silver hair I have wanted since junior high! After salons told me they could not do it, it could not happen. After a beautician that was a family friend said she could do it but never did. After all that, my bald Boyfriend amalgamated a bunch of instructions and anecdotes. We got the tools and the chemicals, the bleach (although they call it "lightener" now) and the wash. The process was long and hard to sit through. The Boyfriend was nervous. I was anxious. The wash took everywhere but where I needed the "lightener" the most. So one more sitting and I will have all silver hair. Down to my ass silver hair will be mine! Oh, yes, it will be mine...
So it looks like I have IBS (irritable bowel syndrome). I am on a med I have to take before I eat, and other than some diet advice, I am kind of floundering. Thanks to a walking, talking personification of awesome on G+, I feel more capable of dealing with this. So thanks a bunch!
This lupus/fibro thing has been kicking my ass lately. I wasted through part of the winter and then put that weight plus ten pounds back on super quickly.
We are battening down the hatches for the end of the school year. I have put together a earned/pledged privilege system. And I am making plans to do more things with the Minions, rather than let the summer slip by without doing something sometimes. Movies, video games together, working in the yard, napping - I want together time before they are too busy for their 'rents, you know?
Toe shoes - they rock. I lucked into some, and I will be talking about them.
I will be talking about the games that I have played recently, all the political stuff going on and how it may change lives like mine and my family. There is so much going on and I want to share it with you.
Wednesday, April 11, 2012
Opiate Crackdown... Again.
So the New York Times has written about the newest opiate prescription crackdown. This will come as no surprise, but a deep burden, to pain patients everywhere. Like life with the kind of pain that gets opiate attention is not already hard enough.
I know that my life is not indicative of all lives, and that my experience is not universal. But it is already hard enough, dammit. I already have to schedule, attend, and pay for doc visits I do not need (as opposed to the many I do need) in order to "check in" on my pain script. I have already mentioned several times that it is no longer cutting it, and we are going to have to find something better that still leaves some upward mobility in this area for the rest of my life.
That is part of what I mean when I say it is already more difficult than it should be. I have to plan to be in pain for the rest of my life. Imagine that, if it is not your life: you can never, ever have a pain free day. Not once can you ever go to sleep thinking that tomorrow will be better. That maybe, one day, you will find a way to not actively suffer throughout your day.
Just think about that for a minute.
So, your pain is incurable, but "manageable" through drugs. Opiates. And at every turn, it feels like someone is trying to remove the one thing that makes your daily activities possible. That allows you to not spend your day curled up in a ball, in tears, on the bed you rarely leave now.
Also: no one believes you. No one truly has a hint of a clue as to what life is like in your chronic pain body. And they simply cannot fathom the amount of pain one human being can feel and still be here, still be trying to function, still be trying to make some thing of their life. And they cannot imagine that one may need an evil, addictive opiate to manage. They do not understand the difference between addiction and dependence. Hell, a lot of detox programs do not understand that difference.
So sure, they may catch some people abusing the system. And some doctors may, from what was in the article, find some other, maybe even more effective treatments for a few. But what this really means is that a lot of law abiding patients are going to be in a lot more pain in the name of... Hell, I am not even sure. It will not matter to those patients. It does not matter to me. I just want someone to have an idea of the hell that some people are going go through in the name of it.
I know that my life is not indicative of all lives, and that my experience is not universal. But it is already hard enough, dammit. I already have to schedule, attend, and pay for doc visits I do not need (as opposed to the many I do need) in order to "check in" on my pain script. I have already mentioned several times that it is no longer cutting it, and we are going to have to find something better that still leaves some upward mobility in this area for the rest of my life.
That is part of what I mean when I say it is already more difficult than it should be. I have to plan to be in pain for the rest of my life. Imagine that, if it is not your life: you can never, ever have a pain free day. Not once can you ever go to sleep thinking that tomorrow will be better. That maybe, one day, you will find a way to not actively suffer throughout your day.
Just think about that for a minute.
So, your pain is incurable, but "manageable" through drugs. Opiates. And at every turn, it feels like someone is trying to remove the one thing that makes your daily activities possible. That allows you to not spend your day curled up in a ball, in tears, on the bed you rarely leave now.
Also: no one believes you. No one truly has a hint of a clue as to what life is like in your chronic pain body. And they simply cannot fathom the amount of pain one human being can feel and still be here, still be trying to function, still be trying to make some thing of their life. And they cannot imagine that one may need an evil, addictive opiate to manage. They do not understand the difference between addiction and dependence. Hell, a lot of detox programs do not understand that difference.
So sure, they may catch some people abusing the system. And some doctors may, from what was in the article, find some other, maybe even more effective treatments for a few. But what this really means is that a lot of law abiding patients are going to be in a lot more pain in the name of... Hell, I am not even sure. It will not matter to those patients. It does not matter to me. I just want someone to have an idea of the hell that some people are going go through in the name of it.
Monday, April 2, 2012
Incoming!
So, I decided, Gentle Reader, that I have kept you in the dark too long. And the truth of the matter is sad, indeed: I keep hitting fibro/lupus fogs that have been eating away at my ability to think things through. Instead of waiting for my brain to come back, which I have been doing off and on for months, I am going to say "fuck it" and forge ahead.
But this diminishment has kept me from writing my review of the terrific How To Be Black. It has delayed my playing and review of Leela. Never mind what it has done to my personal life. Arg! I have drafts going about gun culture, about Civil Rights (TM) & civil rights. And I did actually tally up your answers to my question earlier, about what you are interesting in reading - and have started working on some of those subjects! Most of these are actual drafts that I just need to be satisfied with and publish - not pipe dream promises.
Thank you for your understanding and for sticking with me. I am sorry that the mess I am dealing with has the ability to mess up pretty much everything I am involved with or am trying to do.
But this diminishment has kept me from writing my review of the terrific How To Be Black. It has delayed my playing and review of Leela. Never mind what it has done to my personal life. Arg! I have drafts going about gun culture, about Civil Rights (TM) & civil rights. And I did actually tally up your answers to my question earlier, about what you are interesting in reading - and have started working on some of those subjects! Most of these are actual drafts that I just need to be satisfied with and publish - not pipe dream promises.
Thank you for your understanding and for sticking with me. I am sorry that the mess I am dealing with has the ability to mess up pretty much everything I am involved with or am trying to do.
Friday, March 2, 2012
Brain Fog and Me
I have been wrestling with brain fog lately. Lupus/SLE and Fibro can both cause it. Brain fog is a state of depressed cognitive function. Focus is greatly reduced. Brain functions involving numbers suffer from increased difficulty, even something as simple as figuring a tip. Emotional consistency is a struggle.
For me, it means being much more easily confused, I lose numbers entirely (from doing even simple math to remember things like ZIP Codes), multitasking is right out of the question, my ability to juggle emotional stressors is greatly reduced. Please remember, brain fog is not an illness of it's own, it is "merely" an added problem, usually springing up during sickness or flairs, but once in a while it will strike all by itself.
Brain fog makes focusing difficult, so I have been flitting around while I write this, knowing that I want it done yet unable to really sit down with it and work consistently.
I have a good example. I have been reading How to Be Black by Baratunde Thurston. It is a great book, and I will review it here. But brain fog keeps getting in the way. Sometimes I look at the text and it just swims. Sometimes it looks fine but the words do not translate into ideas as I read them. Every once in a while, when the fog clears, I can read sections and write down what I think of them - I have several of those, but no where near enough to write an actual review. I feel awful because my review is late already, but brain fog will not negotiate. The book deserves better than me, to be sure. Note: I was given a copy to help spread the word - and you should know that. But that actually predisposes me to be harder on a book or product rather than easier! And yet, HTBB is still awesome.
I will write more later, probably have a post out tomorrow. My current goal is two posts a week, and I am more or less doing just that.
For me, it means being much more easily confused, I lose numbers entirely (from doing even simple math to remember things like ZIP Codes), multitasking is right out of the question, my ability to juggle emotional stressors is greatly reduced. Please remember, brain fog is not an illness of it's own, it is "merely" an added problem, usually springing up during sickness or flairs, but once in a while it will strike all by itself.
Brain fog makes focusing difficult, so I have been flitting around while I write this, knowing that I want it done yet unable to really sit down with it and work consistently.
I have a good example. I have been reading How to Be Black by Baratunde Thurston. It is a great book, and I will review it here. But brain fog keeps getting in the way. Sometimes I look at the text and it just swims. Sometimes it looks fine but the words do not translate into ideas as I read them. Every once in a while, when the fog clears, I can read sections and write down what I think of them - I have several of those, but no where near enough to write an actual review. I feel awful because my review is late already, but brain fog will not negotiate. The book deserves better than me, to be sure. Note: I was given a copy to help spread the word - and you should know that. But that actually predisposes me to be harder on a book or product rather than easier! And yet, HTBB is still awesome.
I will write more later, probably have a post out tomorrow. My current goal is two posts a week, and I am more or less doing just that.
Saturday, February 11, 2012
A Day Without
I was not going to write today. Today is a day without. If you are on any kind of regular medication, you know what that means. If you are on pain medication, you know exactly what I mean. I am managing: keeping as busy as I can, my mind as off of it as is possible, and simply riding it out when those fail.
We filed taxes today, which meant talking to a stranger about being officially disabled. And of course, because I look the way I do, I get the look - of just enough socially acceptable disbelief without out and out accusing me of fraud. And I just sat there, paralyzed by all the available options of anger and ranting and pontificating stretching out before me, knowing I could touch none of them if I wanted my taxes done today. And the moment passed as quickly as it came, with no acknowledgement that it had even occurred.
Hell if pain meds are not a double edged sword. Without them, I am more alert, more bright, more capable of feeling. But with that comes not - because the thing I am most alert to, feeling the most, is pain. And not a practical, productive pain - no, a lingering, heavy, valueless pain. We put up with, even court, pain for certain reasons: athletic excellence, child birth, rights of passage. There is pain for good reason.
Chronic pain is a different animal. It eats at your psyche, even when you have it "controlled." Even then, it is a specter waiting to lash out at you the moment you forget to take your meds on schedule or, in this case, go without for a simple, single day. You are, now and forever, at the mercy of any number of factors with infinite ways of going wrong. And they do go wrong. All the time. So the only time you feel truly safe is when you have them in hand, and only until you can see the bottom of the bottle. Then this dance starts all over again: see the doc if it is that time, make sure they still feel you need what you know you need, useless insulting questions about if you are selling your Rx, then if you get through that it is off to the pharmacy, and it has it's own little dance.
The day moves both far too slow and far too fast. It feels like swimming though rapidly hardening cement that has somehow caught an icy fire. It is an amazing sensation to move through it, but if feels as though if you stop moving you will drown in it all. But everything around you is somehow unaffected by this miasma and keeps running at normal speed... A speed completely inaccessible to you without amounts of pain the world around you could never understand. So you save that capacity for something important, like kids that need to go to the hospital or things like that. Otherwise, you muddle through, catching bits and pieces around you. What was that guy saying? You have no idea - you were trying to figure out if that pain in your back was coming from your kidneys or your sciatica. Because latter is just fucking with you, the former means you should grab your hospital bag.
So today is just a day. Today is one of those days. Tomorrow will be better, all happening as foreseen. But now you have knowledge of one of my days, one of those days. A day without.
We filed taxes today, which meant talking to a stranger about being officially disabled. And of course, because I look the way I do, I get the look - of just enough socially acceptable disbelief without out and out accusing me of fraud. And I just sat there, paralyzed by all the available options of anger and ranting and pontificating stretching out before me, knowing I could touch none of them if I wanted my taxes done today. And the moment passed as quickly as it came, with no acknowledgement that it had even occurred.
Hell if pain meds are not a double edged sword. Without them, I am more alert, more bright, more capable of feeling. But with that comes not - because the thing I am most alert to, feeling the most, is pain. And not a practical, productive pain - no, a lingering, heavy, valueless pain. We put up with, even court, pain for certain reasons: athletic excellence, child birth, rights of passage. There is pain for good reason.
Chronic pain is a different animal. It eats at your psyche, even when you have it "controlled." Even then, it is a specter waiting to lash out at you the moment you forget to take your meds on schedule or, in this case, go without for a simple, single day. You are, now and forever, at the mercy of any number of factors with infinite ways of going wrong. And they do go wrong. All the time. So the only time you feel truly safe is when you have them in hand, and only until you can see the bottom of the bottle. Then this dance starts all over again: see the doc if it is that time, make sure they still feel you need what you know you need, useless insulting questions about if you are selling your Rx, then if you get through that it is off to the pharmacy, and it has it's own little dance.
The day moves both far too slow and far too fast. It feels like swimming though rapidly hardening cement that has somehow caught an icy fire. It is an amazing sensation to move through it, but if feels as though if you stop moving you will drown in it all. But everything around you is somehow unaffected by this miasma and keeps running at normal speed... A speed completely inaccessible to you without amounts of pain the world around you could never understand. So you save that capacity for something important, like kids that need to go to the hospital or things like that. Otherwise, you muddle through, catching bits and pieces around you. What was that guy saying? You have no idea - you were trying to figure out if that pain in your back was coming from your kidneys or your sciatica. Because latter is just fucking with you, the former means you should grab your hospital bag.
So today is just a day. Today is one of those days. Tomorrow will be better, all happening as foreseen. But now you have knowledge of one of my days, one of those days. A day without.
Friday, January 20, 2012
On the Word "Lame"
Transcript below the break.
Thank you to everyone that has sent me notes about this video. Your thoughts are greatly appreciated by me.
It is nice to be back.
Thursday, June 23, 2011
Lupus Gimp, How Does Your Garden Grow
With gardening ProTips!
Whether it is in a small pot on a table, or in the section of yard I have claimed for my garden, the smell of freshly turned earth turns me on – not in a horny way, but in a “this is really real life” special kind of way. It helps me feel productive and connected.
I call it my garden because it is my idea, and I am the one that insists on having it. Everyone in the household sees the benefit of it. Everyone in the house contributes effort to it, either because they want to, because I ask them to, or because it increases their allowance. It really is our family garden.
I am not able to do a lot of the physical work of maintaining the garden. My men folk did most of the tilling (I could barely start the damn thing, let alone hold it while running). I did the actual planting, since I knew how to do it – and I would not be mad at anyone else if the planting went bad. The girls prepped the ground for and planted the marigolds around the outside of the garden fence.
Getting out in the garden is trouble to begin with, precautions have to be taken. Bug bites hang out for months on me, so bug spray. The sun is trying to kill me; so long sleeves, pants, gloves, and a hat are mandatory. Sunscreen is just as necessary. I have one of those fatigue-fighting floor mats to use to get down on the ground so I do not waste energy bending or squatting. I can cut this mat to fit rather than trying to squeeze myself onto one of those narrow knee pad panels. I try to do most of the work early in the morning or in the last light of the day to cut down on heat and humidity exposure.
The work has to be broken up into small, 15- 20 minute blocks, or I run myself into the ground far too early. I can only do a few of these before I either need a large break of a few hours, or I may just be done for the day, anyway. I can go for a bit longer if I know that no demands will be made on me later –either physical or mental, because the fatigue shuts down all systems.
Even when I remember to do all of the above – take these precautions and more, there is still a price to pay. For even two to three hours working, I will pay for it by being near useless for up to a week. It is unpredictable. I can influence the odds, but not the roll (I hope that analogy makes sense). I know I will be down a day or two, minimum. Down meaning down to minimum activity: hygiene, dressing, feeding myself, maybe some mindless web browsing. Trashed is also always a possibility: easy clothes if not sleeping clothes, easy food, moving only when I have to do so, asking other people to get things for me, doing nothing I may need to remember later or have any competency during. My right hand will always be near useless for 3-7 days.
Over the years, we have acquired, piece by piece, good tools. Good tools cut down on body wear and tear. Believe it or not, I used to break the garden ground with a shovel – I had the strength and enthusiasm, and we did not have a tiller. Now we have a tiller. Good gloves keep my hands from getting beat up too much too fast. Decent hand tools with soft grips have done wonders.
D has laid ground cloth this year, which is awesome. It removes about 80 % of the weeding I would otherwise need to figure out. Anyone can weed around the larger plants, but until they get big and obvious, I will need to weed around the romaine and spinach. I will also have to do the thinning. Both my guys are happy to water the garden for me.
We are growing tomatoes, squash (straight, crook-neck, and one spaghetti squash) and zucchini (same type of plant), one green pepper plant, spinach, a romaine lettuce blend, cucumbers, and some small onions. Marigolds are planted around the garden fence in order to improve the view and discourage pests. In pots we have strawberry plants, chives, mint (may have drown in the last rain), and oregano. I planted rhubarb and asparagus in the garden but I do not think they will make it (I should have researched first, instead of going on the package!). If they sprout I will need to transplant them to large pots until I find a good, permanent home.
In short:
I call it my garden because it is my idea, and I am the one that insists on having it. Everyone in the household sees the benefit of it. Everyone in the house contributes effort to it, either because they want to, because I ask them to, or because it increases their allowance. It really is our family garden.
I am not able to do a lot of the physical work of maintaining the garden. My men folk did most of the tilling (I could barely start the damn thing, let alone hold it while running). I did the actual planting, since I knew how to do it – and I would not be mad at anyone else if the planting went bad. The girls prepped the ground for and planted the marigolds around the outside of the garden fence.
Getting out in the garden is trouble to begin with, precautions have to be taken. Bug bites hang out for months on me, so bug spray. The sun is trying to kill me; so long sleeves, pants, gloves, and a hat are mandatory. Sunscreen is just as necessary. I have one of those fatigue-fighting floor mats to use to get down on the ground so I do not waste energy bending or squatting. I can cut this mat to fit rather than trying to squeeze myself onto one of those narrow knee pad panels. I try to do most of the work early in the morning or in the last light of the day to cut down on heat and humidity exposure.
The work has to be broken up into small, 15- 20 minute blocks, or I run myself into the ground far too early. I can only do a few of these before I either need a large break of a few hours, or I may just be done for the day, anyway. I can go for a bit longer if I know that no demands will be made on me later –either physical or mental, because the fatigue shuts down all systems.
Even when I remember to do all of the above – take these precautions and more, there is still a price to pay. For even two to three hours working, I will pay for it by being near useless for up to a week. It is unpredictable. I can influence the odds, but not the roll (I hope that analogy makes sense). I know I will be down a day or two, minimum. Down meaning down to minimum activity: hygiene, dressing, feeding myself, maybe some mindless web browsing. Trashed is also always a possibility: easy clothes if not sleeping clothes, easy food, moving only when I have to do so, asking other people to get things for me, doing nothing I may need to remember later or have any competency during. My right hand will always be near useless for 3-7 days.
Over the years, we have acquired, piece by piece, good tools. Good tools cut down on body wear and tear. Believe it or not, I used to break the garden ground with a shovel – I had the strength and enthusiasm, and we did not have a tiller. Now we have a tiller. Good gloves keep my hands from getting beat up too much too fast. Decent hand tools with soft grips have done wonders.
D has laid ground cloth this year, which is awesome. It removes about 80 % of the weeding I would otherwise need to figure out. Anyone can weed around the larger plants, but until they get big and obvious, I will need to weed around the romaine and spinach. I will also have to do the thinning. Both my guys are happy to water the garden for me.
We are growing tomatoes, squash (straight, crook-neck, and one spaghetti squash) and zucchini (same type of plant), one green pepper plant, spinach, a romaine lettuce blend, cucumbers, and some small onions. Marigolds are planted around the garden fence in order to improve the view and discourage pests. In pots we have strawberry plants, chives, mint (may have drown in the last rain), and oregano. I planted rhubarb and asparagus in the garden but I do not think they will make it (I should have researched first, instead of going on the package!). If they sprout I will need to transplant them to large pots until I find a good, permanent home.
In short:
- I love gardening.
- Fair division of labor according to knowledge and ability is essential.
- Taking care of myself means I get more done.
- Trust that once you delegate, problems will come to you – do not hover!
- Working smarter is so much better than working harder.
- Good tools mean less work, less wear and tear on the people doing the work.
- Yum!
Thursday, June 2, 2011
Not a Junkie
Thank you to Blurbette and #TeamAfterParty for bringing this simmering topic back to a brain boil.
Days like today find me feeling like a junkie. At least, I think that other people may see it that way. See, the doctor that signs my pain prescription took a long vacation around the holiday, a vaction which happened to include the day my Rx needed to be filled. So, I was, of course, left waiting. I have only rarely experienced any sense of urgency from medical professionals regarding pain treatment.
After years of fighting and enduring, I did finally get my health pros to take my pain seriously. My GP/gateway provider was particularly hesitant. He did decide (eventually!) that my pain is indeed real, and I am not seeking to sell my pills on the street. Even so, my ability to live my day to day life with at least some freedom of pain is not, and has never been, a priority for anyone with a sheepskin.
The difference between opiate dependence and opiate addiction is not obvious to the casual observer. One of the reasons I hate being called an addict is that addiction is a whole different experience, and I do not want to appropriate that experience set as my own when my addictions are mild: caffeine and nicotine.
I am dependent. This means that I require opiates to modulate my pain (it is long past being negated through most anything) and get through even a vaguely normal day. I acquire them through completely legal means, and there has never been any solid inquiry regarding my integrity. By “no solid inquiry” I, of course, mean other than the default suspicion that accompanies using opiates in the first place!
I take a very strong opiate, and still I do not have pain free days.
People dependant on opiates go through withdraw just like addicts do. The difference between dependent and addicted is not a physical one, in my experience, but a moral one. Unless you are willing to break the law and either buy off the street, or doctor shop, or whatever – there is nothing you can do but wait for the duly appointed authority figure in the matter to get off their DAMN ASS and take care of business.
It is not as if I am the one that insists that I need opiates to control my pain. I tried, both through my own suggestion, the suggestions of friends and strangers, and my DEA worried docs’ suggestions just about every non-opiate pain killer out there. I have also, a very few times, drunk myself into a stupor as a last resort escape from consciousness, if not pain. My liver is still not happy about any of that. To be honest, if killing a chicken in the light of the full moon could relieve my pain, I would probably do it. Nothing works but opiates, and I had a truckload of Nancy Reagan to get out of my damn head before I could even begin to be okay with that.
Extreme, unrelenting pain is insane making. No, I am not taking a poke at folks that qualify as insane – I mean that extreme pain can cause symptoms similar to several diagnosable mental illnesses. Pain can lead to shortness of temper, irritability, paranoia, loss of cognitive function, loss of memory, compulsive behavior, self-harm (in my opinion, this is an attempt to set off the CNS’s pain gate function), loss of physical ability, and unpredictable bouts of extreme anger, frustration, guilt, morose, ennui, and pissed-off-ness. Yeah, ahh, those would be, you know, industry terms…
As I write this, I am coming up on missing my first dose. Within a day after that, if it goes that far, I will have extra super flu-like symptoms (lupus is kind of like having the flu all the time anyway), I will hate the whole damn world, and my vocabulary with mainly consist of the kind of language people use when they tell the Aristocrats joke. It is all I can do right now to try to accomplish all the things that will need to be done for a little while in case I need to retreat to my bed, curl up under a blanket I will then play Too Hot Too Cold with, and spit random curses at the world.
There are a lot of side effects I experience that I am not, and will probably not go into here or with much of anyone that does not need to know. And my experience with this may not the same as anyone else’s, let alone everyone else’s.
Oh, and every six months I have to go though a “Do you still really need these pills?” appointment. Look, if I was all better one of the first things I would do is call all the docs that have been humane, recognized my humanity and sing their praises; then call the other docs and describe, in loud detail, what anatomically impossible feats I would like them to perform for me.
***
As of today, the day I post this, everything is fine. If you were kind enough to have a thought about my well being… well, first, bless you heart! Caring about people on the internet! You are an exemplary human being, Gentle Reader. Second, I am okay. This article was written early, in order to make sure I had something to post even if my doc did not get back to me in time to take away my short term ticket to hell. My doc was still gone, but my old doc is in the same office, was in attendance, and she did come through. So I am okay, and no more likely to explode at anyone than I am on any other regular.
Wednesday, June 1, 2011
To Violently Induce Empathy
I originally wrote this in May, 2010, when I felt particularly injured by people in my life that just were not getting it. I think that acknowledging when I feel like a bitter, embattled bad crip is important. While I was busy drawing analogies, I lost site of how violent this post really is, so you have been warned.
Originally posted elsewhere on May 7, 2010
Originally posted elsewhere on May 7, 2010
I needed to get this out of my head.
Some days I am almost fine. I get up early, I get stuff done, maybe I go out, and maybe I fuck. These days are rare.
Some days I am incapable of almost anything. I stay in bed, or turn the couch into my bed, and veg out to news so I do not feel totally disconnected from everything. I do not fuck with anything on these days, nor do I appreciate getting fucked with by anyone. I can barely move, I can barely read, I have almost no recall and can barely follow a conversation. If I am actually trying to do something while like this, then I place a great amount of importance on whatever that may be, and even then I will probably screw it up.
Most days I am somewhere in-between and either blow all my spoons far too early, or end up doing very little "in case" I need my spoons later that day.
Only if I place a great deal of trust in you will I tell you what kind of day today is when you ask "How are you?” I am so tired of being shut down by people that ask how I am but do not really give a damn.
I "pass" most of the time. People do not know I am disabled unless I tell them. Yes, even with the cane -- this is weird to me. So when I go out with the wheelchair it is almost always a gimp circus. People think that since I do not look disabled (whatever the hell that is supposed to mean!), that I must be faking or something. Fates forbid I actually stand up out of my chair for any reason.
I am tired of being a "good cripple."
Don't touch my wheelchair without gaining my permission first. Do not imply it must be nice to "sit around" everywhere. Yes, I can make those jokes, and you can laugh when I do if you want to laugh. Do not explain to me how good I have it, or how bad you feel for me. Just like I do not get to appropriate the experiences of a person with Autism, you do not get to appropriate mine with lupus/SLE and chronic pain (and SI joint dysfunction, and compressed disks, and non-specific brain damage, and...). Do not lecture me about my behavior, my drugs, or my coping mechanisms. Do not excuse places that are not accessible to me, or accessible to the people that society has labeled the same as me.
Do not "congratulate" me when I am not in the chair. I know you mean well, but just stop it. I may be having a good day, or I may be someplace that simply would not accommodate what I actually need that day.
Do not tell me you know "how I feel" unless you really want to. While there would be no complete equivalent, I could give it my best effort...
I cannot fuck with your genes to make your body attack itself, but I can take a baseball bat to your chest, your lower spine, your SI joint. If it is a rainy day or the weather fronts are changing, I will just wail on every joint you have from your knuckles to your toes to your spine. I will wrap your head in batting so tight that the very thought of light in your eyes will make you cry. I will stuff your ears so that you can barely hear, and cannot make sense of the things you do hear -- only later to remove it all and subject you to such noise that you long for the stuffing. I will knock your legs out from under you when you try to walk, move everything so that it is just out of reach, and recite long numbers as you try to remember your address or someone's birthday or phone number.
I will alienate your friends and family, canceling important events without notice or apparent cause. If they will not come see you, then fuck them because that is the only way you will socialize most of the time. I will make you doubt yourself, the people around you, your ability to do or think a damn thing, and then make you feel bad for being angry about your situation. I may let you go out every once in a while, but I will fill that time with so much fear, doubt, and shame that you will wish you stayed home. Your doctors will become your only major contacts outside of your home, and even then I will not always let you go -- and only the really good ones will even listen to you, let alone believe you.
Whatever heaven you believe in help you if you dare shut me down and try to pretend everything is okay. I do not get to do that, so neither do you.
Most folks that will actually read this never have to worry about any of it. You are kind folks that express sympathy without pity, and accommodate without fanfare -- and as you can probably see, that means a lot to me. This just would not leave my head and I needed to rant.
I will alienate your friends and family, canceling important events without notice or apparent cause. If they will not come see you, then fuck them because that is the only way you will socialize most of the time. I will make you doubt yourself, the people around you, your ability to do or think a damn thing, and then make you feel bad for being angry about your situation. I may let you go out every once in a while, but I will fill that time with so much fear, doubt, and shame that you will wish you stayed home. Your doctors will become your only major contacts outside of your home, and even then I will not always let you go -- and only the really good ones will even listen to you, let alone believe you.
Whatever heaven you believe in help you if you dare shut me down and try to pretend everything is okay. I do not get to do that, so neither do you.
Most folks that will actually read this never have to worry about any of it. You are kind folks that express sympathy without pity, and accommodate without fanfare -- and as you can probably see, that means a lot to me. This just would not leave my head and I needed to rant.
Thursday, April 14, 2011
HAWMC Day 2, Word of the Day
Word of the Day Post! Go to dictionary.com and write a post inspired by their WOTD – or grab a dictionary (or any book) from your bookshelf, open to a page, and write about that word. Can you link the word to your condition somehow?
Okay, I can do that!
I picked insidious.
–adjective
1. intended to entrap or beguile: an insidious plan.
2. stealthily treacherous or deceitful: an insidious enemy.
3. operating or proceeding in an inconspicuous or seemingly harmless way but actually with grave effect: an insidious disease.
I believe that the implications of insidious in relation to lupus to be plain. So if it is not, just imagine an invited guest that invites themselves into every aspect of your life, and is almost exclusively bad – very rarely neutral, never a beneficent presence. Every once in a while, your life may level out a bit; maybe even enough for you to think that your guest has perhaps gone away. Oh, no, your guest has simply been painting the exterior of your home a fragrant, organic shade of fresh feces.
Lupus/SLE is insidious.
Wednesday, April 13, 2011
The Health Activist Writer's Month Challenge (HAWMC), Day 1
HAWMC Day 1:
Health Acrostic Write an acrostic for your condition or the word HEALTH.
Living
Under
Perpetually
Unsatisfying
Situations
Okay, yeah, that works - particularly the aspect of never being able to dependably make plans.
This writing challenge is held by the WEGO Health Portal, and I see it as a really good idea.
I am going to keep up on the HAWMC, as I think it is a great idea, and may help me to find some direction for my writing. I am, of course, getting into it late in the game. I will tackle the topics as I can to catch up. If that is not possible, or I get really sick or something, I will still do them as I can.
Health Acrostic Write an acrostic for your condition or the word HEALTH.
Living
Under
Perpetually
Unsatisfying
Situations
Okay, yeah, that works - particularly the aspect of never being able to dependably make plans.
This writing challenge is held by the WEGO Health Portal, and I see it as a really good idea.
I am going to keep up on the HAWMC, as I think it is a great idea, and may help me to find some direction for my writing. I am, of course, getting into it late in the game. I will tackle the topics as I can to catch up. If that is not possible, or I get really sick or something, I will still do them as I can.
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