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.)  

So Much Depends on a Little Red Plus Sign

Most social networks have a method by which you can show your approval of a post. Whether it is "plussing" on G+, "liking" on Facebook, "favoriting" a post on Twitter, pushing/trusting/liking on Sulia, and pinning and/or heart'ing on Pinterest you have a way of saying "I approve of this." The problem is, there is no way of adding why you approve of a post, and I want to break down why I give things this silent mark of approval:

• I may like your post because I believe the same thing, word for word. This is the damn for me, although it seems it is the one that folks always assume is meant when you plus.
• I may favorite your tweet because I am glad you said a thing, whether I agree or not. I may just believe that your thought needs to be out there in the ether. I believe in fostering intelligent dialog when possible.
• You and I may be friends, so I plus your stuff that makes sense in order to encourage you to express yourself. 
• I may appreciate the opportunity to see a product or idea. Maybe I did not even know it existed until you posted it.
• I may pin something just because it is pretty or suits my aesthetics.
• Maybe you posted something that took skill or bravery to post and I noticed.
• Sometimes I may actively disagree with a post, but appreciate the way something was said. Maybe it was an innovate way of looking at the issue, or had a personal touch that made the post evocative. Maybe it was just damn good writing. This goes back to fostering intelligent dialog when possible.
• Maybe you were just damn funny and I lol'ed.
• Every once in a while, I will fat-finger a post and plus/like/pin something I did not mean to. You know what I mean, you are looking at one thing and press the button you think will favorite your target but instead you ended up "liking" something horrible. Sometimes, it takes someone pointing it out to find out that it even happened. This is the most rare of cases, and I will immediately correct, if possible, when asked about it. Because I am a grown-up and can admit I screwed up.
• Liking/+1'ing are good ways to keep track of a post as it develops. I may just want to see what happens next...

I bet you experience this problem: someone sees that you put your stamp of approval on one thing a person wrote and now you are responsible for everything that person ever wrote, ever. There are a lot of reasons to stamp someone's post, but people will usually assume that you did it for whatever reason makes them the most angry. I ask first before I assume, and it is my opinion that other folks should ask first too. We should not let assumptive, aggressive anger overrule common sense. 

On most services such as G+, Facebook, Twitter, Pinterest, Sulia you can undo your stamp of approval. Usually you can just click the same button again, the label on the button usually changes to reflect this functionality, but not in every case. If you no longer wish to have approved a post, a group, or a person - you can change your approval status to reflect that, to a degree. I rather like Buzzfeed's method of giving the user several adjectives to choose from to voice an opinion on a piece.

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.

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!

Sharing

I love to write. I love to read. 

These have been true for all of my life that I can recall. When that was taking away from me for a while because of The Incident, I was inconsolable. I was inconsolable about a lot of my losses, but the names of my loved ones and reading and writing were the top of that list. Buttons, shmuttons. I have clawed a lot of that back, and I am both proud and grateful for all the help that my loved ones offered (and offer, they rock).

I really dig blogging. Hell, I have left a LJ path behind me that has at times been huge. I dig reading blogs, looking into you as you do into me.

Every time I pick up blogging again, it is for a reason. And I find as that reason passes or I have done what I can with or about it - I start to write really personal things about living my life.

Those get left in the draft folder and or deleted - although every once in awhile I will share one. And you respond by reading it a lot. Which is great.

It also happens to scare me to death. 

That article on wheelchair etiquette is born of a thousand indignities suffered by me and other people. I try to imagine the folks that visit it, and I think it appeals more to folks in chairs that need a release than maybe it does to the able-bodied. The sharing of those indignities, in my particular way, seems to have helped some some bodies out there. I think I want to do more of that.

I have been hesitant  though, most of the time, to really peal the skin off and show you, J.D. Ballard style, the workings and brokenness underneath.

I think this has to change. I have decided to write. To be. To share. To be more vulnerable. Maybe to YouTube. 

To dare to do enough to risk being wrong. In front of you.

I am not so much inspired as I am tired of the shell I have insisted on living in for my own protection. I am a big girl and I can handle getting hurt. Hell, pain has never really been the deterrent for me that it is for most folks. I am not coming out all Bob Flanagan, but something closer to that than where I am now.