Not Ready to Die Anymore, and Some Thoughts on Whining and Addicts

As you can tell from my earlier post, I was pretty sure the pain was gonna kill me, and I wasn’t too unhappy if that were the outcome. I was seriously afraid that nothing was gonna touch the pain anymore, that maybe it wasn’t the med change, it was some new, worse, more debilitating stage.

As it turns out, pain relief was not that far off. It did take an hour and a half after taking my meds for it to calm, but I could feel it step down, bit by bit. You know that 1 – 1o pain scale they always ask you to assess yourself on? Well, I was at about 100, and for that hour and a half, I could feel it go down 1 number at a time.

I say this after having borne my second child naturally, lived through meningitis, and passed a kidney stone. Those are always my pain criteria. When I’m asked about pain, and it’s really, really bad, and I think any normal person would say it’s a 10, I realize it’s not as bad as one of those 3, and so I end up saying something like “8″. This was no 8, m’dear!

Anyway, it’s down to a tolerable level. And I think I know what my medication levels should be to get me through the next 3 weeks. To anyone who read my post, or my Facebook comments, I hope all of my whining hasn’t put you off. I would apologize, but honestly, those outlets were really helpful in getting through this afternoon.

I hope I don’t get that whiny again, anytime soon. I don’t like being that way, and I always worry that it’s going to keep people from wanting to be around me. I don’t whine because I need the feedback from others. I write whatever I need to, and if someone else reads it, that’s great. But, I don’t need the “I pity you” type of response. Make a joke (yes, even my friend making a joke that she later thought might have been insensitive was amusing and not offensive) or distract me with Battlestar Galactica plots, or whatever. Really, when I need sympathy, I have a few friends who I think understand what I need, and throw a dose my way, followed by mocking me (Brenda, you know who you are).

Anyway, after resurfacing from the pain, I started to think about the guy I caught on camera either stealing or attempting to steal my pain pills a few months ago. I’ve often tried to empathize with him, to understand why he would do that. He wasn’t in pain, and it wasn’t a 1-time thing. We were friends. Our kids and our dogs played together, we often had drinks on my patio together. He saw me struggle through those days without my medications (even though I didn’t know he was responsible at the time), and how awful it was for me.  So I struggle to understand how he could do that to me.

My mom told me that one of my cousins that I grew up with (she lived with us a lot) did that to her a few times, and that after being helped up, her life is now a shambles again, because of drug use.

Tonight clarified something for me. Although my body may be physically addicted to these pills, it’s not the same thing that a drug addict feels. During the worst of my pain tonight, I knew that there is no way I would steal pills from my mother’s medicine cabinet (though I’d probably beg her for one or two), and that there is no way I would break into someone’s home to get them, or rob a pharmacy to get them. Needing pain relief is not the same thing as needing a “fix”.

So, there’s not one ounce of understanding that I can give toward my former neighbor. I do have compassion, and I hope that he gets help via drug rehab, and I hope that he spends some time in jail. But, I cannot empathize with his actions.

That said, I have one more related ramble. Someone else will have to tell me if this is just Utah, but since my 11 and 13 year old sons started school, they’ve come home during Red Ribbon Week every year, and told me that it made them sad that I do drugs. Now, this was before my current issues. My sons were talking about my smoking habit, and the fact that I drink. I went through year after year, trying to explain that it wasn’t the same thing as “doing drugs”. I didn’t want to undermine the beneficial things that school was teaching them about drugs – never do I want to find my son dead with a needle in his arm, or even high on cocaine. But, smoking a cigarette will not lead the average smoker to other illegal activities, like theft and burglary. Alcohol can lead to drunk driving, but if every person who drank alcohol were to drive drunk, 3/4 of the population would be sitting in jail.

I finally broke down, and took my sons to the medicine cabinet, and showed them a bottle of Ibuprofin, and the warnings on it, and that it was a drug. They knew by then what Ibuprofin was. I showed them other things, like medication for upset stomachs and sore throats. And then I took them to the kitchen and showed them Baking Soda, which is also technically a drug.

I told them that while smoking was unhealthy, there is nothing wrong with drinking when you’re old enough and as long as it doesn’t violate your own moral conscience. I told them that even illegal drugs like marijuana can have medical uses, even though we aren’t supposed to use it in the U.S. I told them that pain pills were illegal without a prescription, and that taking them illegally can lead to bad things like addiction and theft and so on. But that taking them when the doctor gives them to you and you need them is different.

I explained all of this and so much more. And I will continue to tell them. Because, if they think drinking alcohol is just bad as using meth, they have very dismal futures ahead of them. And so, I will be honest with them about the repercussions of drug use, and which ones are worse than others, and that while smoking pot may not seem like a big deal, it can take away so many options for your future if you’re caught with it. And I am honest with them about my struggle to quit smoking. And I hope that they’ll understand, and that when they become adults, they’ll define their own lines and will not cross them. And that they will not turn out like my ex-neighbor. (If they smoke cigarettes, I’ll wring their necks, though!)

So, thanks for reading my ramble, I’m going to go finish the last episode of Battlestar Galactica as I wait for my sleeping pills to kick in.

A Day Of Pain – Almost Over

So, last Wednesday my doc switched my pain med, because my current prescription wasn’t doing enough, anymore. As in a full week ago. Between Wednesday and Monday, I called the pharmacy several times, the insurance company, and my doctor’s office a couple of times, because it needed a “pre-authorization”. Finally, on Monday, the insurance company decided I couldn’t have that switch, apparently because of money.

In the meantime, I ran out of the medicine I was on (well, ok, my last one was Tuesday night). Tuesday morning, my doctor’s office called to say the insurance denied the switch, and offered me something else. Of course, I took it. Except it felt like I’d taken nothing. It reminded me of those days a few months ago when someone stole a bunch of my pain pills, and I ended up having to go 3 days completely without them, after having cut back when I realized I was running out.

So, after trying again with it this morning, I called my doc’s office to let them know it wasn’t enough. I thought I was gonna die at work today. I actually realized about 1 pm that I did have 1 pain med left, but it only took the edge off.

I finally got a call telling me it was ok to adjust my meds, and how.

So, I think I’m gonna be ok. But, if I have to go through another day like this, I don’t think I can work anymore. And I really, really want to finish up my project in the week I have left (February 1 is my last day on the contract, unrelated to my illness. And I still have a job, my company rocks and I’m an employee to them, not a contractor).

I felt like I was almost out of pain earlier, but now it’s back and twisting into my shoulder. Another 2 hours. That’s all, until I can do something to fix it, and be on schedule.

I’m trying to focus on when it gets better. Like in 2 hours, that’s 2 episodes of Battlestar Galactica until then. Less than 3 weeks till surgery. In 3 weeks, I’ll be waking up with a zipper up the back of my head, and high hopes that all of these things I’m going through today will soon be over. I really want that 3 weeks to get here. But I need those 2 hours to get here, and fast. Mom (who is an RN) has always given me the advice, when dealing with pain, that it’s better to keep it under control in the first place, than to have to try to bring it back down. Once I have it under control it’ll all be ok, right? Right.

I’m trying to think about everything else until then. Like, what are my sister’s plans to get here? I think I’ll know by this weekend. And will I be coherent the day after surgery? Who will visit me? What will I remember? If I’m gonna be a true Dori for a few days, I really ought to save the last few episodes of Battlestar Galactica for those days – the joy of discovering what happens, over and over, that would make me happy, right? Will I be able to lift my head to a good position to read books at first? Ok, those are all the questions I have for myself for the moment. Now to engross myself with Battlestar Galactica for just a little longer.

Communication – A Rant!

I’m a perfectionist typist. I learned to touch type (using one of those space shooter games on a PC) over 20 years ago. I’m at the keyboard daily, for both work and for fun. I’ve been known to carry on a conversation while typing something totally unrelated, without missing a beat in either the conversation or the email. Besides which, I’m also a spelling and grammar queen (though I will admit having certain grammar rules I purposely break). I did lose that 2nd grade spelling bee because I tried to put a “gh” in “astronaut”, but other than that, I rarely get words wrong, and never common words. I rarely use “textisms”, and generally type every word out, with perfect capitalization, even when using my phone. Even back in the day when my phone only did T-9.

So why the hell isn’t my brain firing those connections anymore? Why do I type totally different forms of the word I’m trying for? Like in the above paragraph, I first typed “shooting”, instead of “shooter”. Or in this one, I tried to combine “different forms” into a new word, “differorms”. I randomly add spaces in the middle of words, or miss them between two words. Or type “you” instead of “she”.

 

Oh, and correcting myself? Arrgghhh! I used to know when I’d mistyped something, and instantly correct it, without putting thought to it, even knowing how many backspaces to use. And now? I always seem to over or under backspace, and when you combine that with already having started retyping, and then having to backspace again, sometimes it takes me 10 tries to fix a mistake. And I can’t NOT fix it. (Bad grammar, bad!)

Earlier today, my sister was scratching her head, wondering “WTF?”, when she read my Facebook update of “Thing mints. Drool!”

Apparently, the drool reference there was to my own drooling idiocy, rather than the yummy chocolate and mint cookies.

Ok, I don’t really feel like I’m an idiot. Ok, maybe a little. But more frustrated than anything. I’ve always had this problem where sometimes I can’t remember words, usually nouns, often names. But, when I’m having trouble with nouns, I joke that I’ve had a stroke. It’s not as funny anymore, because it happens more often, and now it’s somehow screwed up the wiring between my brain and my fingers. I’d rather lose the ability to talk than the ability to express myself with typing. Mostly because I’ve always expressed myself better that way.

My neurosurgeon says that my memory problems, including communication issues, are a result of the medications I’m on, and not a Chairi Symptom. I’ve read in some places that it is a Chiari symptom, but either way, it should go away after surgery. I hope.

That leads me to another thing. After surgery, while I’m still in the hospital, I hope I’m not a drooling idiot (who can’t type or form complete sentences) and that I’m not a just plain idiot (like those times when I don’t remember what happened when I drank too much…). I’m a bit worried. I guess I’ll leave that on my sister’s plate, though. I’ll make lists of who is allowed to visit me at what stage.

Lists. I’m loving lists.

And just a minor rant, at least so far. I’m not sure if I’m up to finishing my last week of work. I really want to, and maybe I’m just sick today, I mean, I felt sick, and vomiting was an issue, but I think that everything else added to being sick was more than I could take. I really want to finish my project at work, but what if I can’t? I really don’t want to fail this, but how do I make it through? One day at a time, I know….

One last thing. Anyone out there reading this who has had decompression surgery – I have questions for you about the shunt, if you had it. I’ll write another post about it soon, but my neurosurgeon is putting a shunt in to drain spinal fluid for a couple of days, I’m wondering what that’ll be like.

Well, that was fast!

I got a call from my Neurosurgeon’s office today, asking if I could come in at 2. My original appointment was February 2 6 (oops, the 2nd is my younger son’s bday). Of course, I went.

I was worried I wouldn’t like him, because in general I despise doctors about as much as Tea Partiers. Ok, not quite that much. But a lot. I was thrilled a few years ago when a friend on Twitter suggested my primary care doctor, because I’ve loved her from day 1. But, a neurosurgeon? I think I expected him to walk in, announce that I had Chairi, and state whether or not I’d be having surgery and walk out. That wasn’t at all how it happened!
I did wait, about as long as the stereotypical doctor’s office makes you wait. I kept busy with reviewing the printouts that I had with me. One was of my meds list, which I had done for my primary care doctor. Side note: If you ever have to take more than 3 medications, put them in a chart or in Excel or something, and keep track of them! It took me almost 2 hours last week to organize them. I’m on 19 meds, with about 3 of those being prn, or “as needed”. The refill dates don’t match on most of them, and the number left varied from the bottle to what the pharmacy said, and for some weird reason, my anti-nausea meds are in the wrong bottle.

Where was I? Oh, yes. Since I had some medication changes this morning, I updated the printed list. And I added a couple of questions for the Neurosurgeon, beyond the 20 or so I already had for him on another printout.

Another side note: between my primary care doc’s office and the neurosurgeon’s office, I lost 3.5 pounds, even though I had a Subway sandwich in between. I suppose Subway commercials are right!

I waited long enough to wish I had another pain pill, because those seats in the room are enough to make an otherwise happy person curl up and cry. But, I think the wait, once I got back there, was really only about 10 minutes. I was in the waiting room far longer than that. One thing I’ve learned – good doctor’s don’t stick to the 5 minute time slot you’ve been allocated, when you need more. And so if everything else about a doc is good, I don’t mind the wait.

So, the doc comes in, and before he says a word, I already like him. Just something in his manner, I could tell he wasn’t coming in to tell me that my problems were nothing, and to go home. I just knew. So, he starts off by telling me that if I were a typical patient, coming in with this Chiari Malformation, that he’d send me off for other treatments. “But, from your chart I can see you’ve already done that”. Apparently, 19 meds is a little unusual, even for neuro patients.

He then proceeded to use the skull and brain, that I’ve pictured here, to illustrate what Chiari is, and how it is that it causes problems.Then he lays out all of my treatment options, which boil down to a) keep doing what I’m doing with the meds that aren’t working or b) surgery, which he recommended. And then gets the skull dude and the neck portion of the spine out to illustrate the surgery and how it works.

He looks at me, as if to see if I have questions. So, I finally tell him that I’m the kind of person who has to know everything (which is how I taught myself programming) and that with my mother being an RN, I know quite a bit about Chiari, but I don’t want to believe everything I read on the internet, I’d rather get it from an informed source I can trust. (I believe I scored a few points by saying that)

So, I tell him that I came in knowing that I want surgery, and started to explain that I really just want my life back. I want to go play in the mountains with my kids, and do something besides sit in a chair every night watching tv (no matter how great BSG is…). I was almost in tears, with this line I was going down, explaining that these symptoms were not something I could just live with, and what I hoped for my life to be. Luckily, I was interrupted by a phone call he had been expecting, so I didn’t actually bust out the tears on him.

When he returned, I asked about some of my symptoms that I wasn’t positive were a result of the Chiari, such as the memory issues and the nausea. I still wonder if they are, but he said it was more likely that they were a side effect of the medications I was on.

He told me that the big hope with the surgery is to get off of all of those meds, and not have the pain, headaches and numbness return. He did say that for the first month, most people are in so much pain, they wish they hadn’t had the surgery, but after about a month, the can see the benefits. And that 2 – 10 month recovery? Probably not nearly the 10 months, probably much closer to the 2, possibly even less.

I asked him what the risks were, and he said that besides the pain after surgery, the worst outcome is that the surgery doesn’t help. He’s not had anyone stroke during surgery, or anything like that. So, as I’ve read online, this surgery is probably the safest brain related surgery they can do!

He also said that the pineal cyst was too tiny to be an issue, and that I don’t need to worry about it, and that he felt that it definitely wasn’t causing symptoms.

So, then he asked when I want to do the surgery. I asked what timeframe we’re looking at, and he said it was up to my schedule, but he was thinking the first week of February. Knowing that my sister is coming out, and wanting to give her a little more time, plus wanting to finish my project at work, I asked for the second week in February. He stepped out, and when he returned, he asked “How do you feel about Valentine’s Day?”

Being a single gal, having surgery on Valentine’s Day probably makes it way more likely that I’ll get flowers and/or chocolates that day, so I said yes, and I’m set to have surgery on February 14.

Just like that. In a month from today, I’ll be in the hospital with a zipper head! Perhaps I should get my sister to tattoo “ykk” next to it? Haha!

Now that surgery is for really reals happening, I’m going to go watch those Chiari surgery videos that I ran across during research. I didn’t want to before, because surgery was only 95% certain. Now that it’s 100%, I’m morbidly curious.

I’m also researching Advance Directives and Medical Power of Attorneys. I have a friend who is an attorney helping me figure the forms out, so that should be fairly easy. And I know that I want my sister to make all of my decisions, but I need to figure out who I want as a backup. As much as I love my mother, and trust her instincts as an RN, she also has religious beliefs against blood transfusions. So, I need to decide who among my friends I should have as a backup. Not that I’ll need it, but this just kind of reminds me that I’ve been meaning to have one done for a while, and it would be stupid to go into this surgery without one. (Since writing that, while waiting to make sure most of my friends know, I’ve decided on and asked the backup)

On to a brighter note, for those of you who are my friends here in Utah, save the date – February 11 –  I’m hosting a party at which I will be shaving my head. I plan on drinking a lot of wine, laughing at a lot of brain jokes, and enjoying the company of friends. For those of you wishing to partake in the Hallmark festivities, I’ll throw some Valentine’s stuff in, too. :)

I’m sitting here waiting for a few people to call me back, before I go ahead and post this publicly, or send emails to work about the surgery date, before a close friend there calls me back. I guess that means it’s Battlestar Galactica time!

P.S. for JM Bell, I’m gonna milk this for all it’s worth before surgery, so you better be there this Saturday, as well as my party on the 11th! Cause I might die!

(for my kids, in case they read this – that’s a joke, I won’t die or anything, but JM Bell still needs to be there!)

P.P.S. I’m going to take my sister’s suggestion, and this will now be a Zombie Valentine’s Day party! Brainnnzzzzz!

P.P.P.S. I totally meant to say the name of the neurosurgeon that I so far admire – he’s Dr. Mark Reichman, of Neurological Associates, and his office is in the new IMC hospital center. IMC will be where I have the surgery done. If my BFF has her twins about that time, it’ll make it a two-fer for many of our friends! ^-^

Saintless.com Has Been Taken Down

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SAVE THE INTERNET.

This site has been taken down in protest of bills currently being considered in the US House and Senate. Called SOPA and PIPA,
these bills threaten to destroy the Internet as we know it.

If either one passes, your favorite sites could disappear forever.

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ACT NOW.

CALL YOUR SENATOR AND ASK THEM TO VOTE “NO” FOR PIPA JOIN US

SOPA Strike on January 18, 2012

My little blog will be participating in the SOPA Strike this Wednesday. So, if you visit me that day, you’ll have an opportunity to join the national strike.

What is SOPA? Well, basically it’s legislation that supposedly will end online piracy. Except, in reality, it’ll shut down free speech, linking to other sites, and even blacklisting sites permanently, just on the accusation that they’ve done these things.

I think Cory Doctorow describes the potential impact of SOPA and PIPA much more eloquently than I:

Boing Boing could never co-exist with a SOPA world: we could not ever link to another website unless we were sure that no links to anything that infringes copyright appeared on that site. So in order to link to a URL on LiveJournal or WordPress or Twitter or Blogspot, we’d have to first confirm that no one had ever made an infringing link, anywhere on that site. Making one link would require checking millions (even tens of millions) of pages, just to be sure that we weren’t in some way impinging on the ability of five Hollywood studios, four multinational record labels, and six global publishers to maximize their profits.

Seriously, read the whole thing, even if the idea of the SOPA strike is not new to you. This isn’t just a bit of internet fun we’re saving. There is almost nothing in this modern world that wouldn’t be impacted. And it’s not a left-wing vs right-wing issue. It’s corporate greed by just a few vs everyone else. It’s internet censorship in a really ugly way.

So, on January 18, this blog will go dark, with information about the SOPA vote coming up in, in a nationwide blackout protest.

Frustrations

So, when I found out in November that I had this Chiari Malformation, I spent some time trying to find others who had it, because there’s a group for everything, right? Well, I found that there were 2 (I think) in Utah, but they both seemed to have been abandoned at some point. And I found some national ones, but they seemed to be populated with the worst cases. I knew that if I joined up with that group, I’d wind up thinking my hurt toe had something to do with Chiari, and I don’t want to be that way.

So, I’ve read everything I could find, and I’ve compared what I find online to my scans over and over. I think I finally “get” it, and can see what they’re talking about. I think my understanding went through about 3 different phases before reaching this level. I wonder if I have any further phases? I’m actually kind of looking forward to that part of the discussion with the Neurosurgeon, so see what he thinks.

I really hope that when I go in, he gives me more than 5 minutes. I have SO many questions, I started a list. And I really hope that he can provide the future that I’ve got in my head. I’ve always had all these “little things” wrong with me, like the headaches. I laughed at the Neurologist for wanting to concentrate on them. When I was a teenager, I had my first MRI because of them. I think that’s when my TMJ disorder (aka clicky jaw) was confirmed. But, I’ve had the headaches so long that they’re just a bunch of noise. It takes a migraine for me to even notice a headache anymore. Except for my new ones, where they kind of feel like an alien or two (depending on if it’s both sides) has attached itself to the back of my head. Those aren’t migraines, but DAMN they are not something I could get used to, either.

Where was I going with all this? I guess I was mostly venting frustrations, but I also have this hope that life can be like it was 4 or 5 years ago, when I kept my house clean all the time, and a walk in Tanner park with the kids and the dog wasn’t beyond my ability, and when a set of stairs wasn’t an obstacle to taking out my trash, and when I didn’t have to cancel on friends because my body can’t take the movie theater seat, and when I could go to sleep on my own at bedtime. I have hope. That can be my life again, and it will be. IT. WILL. BE.

Back To Tell My Chiari Story

I know that my blog friends have been expecting me to return with politics galore. Goddesses only knows how much fodder that is out there these days! And I have 2 very important political races to support. However, this isn’t about that. If you know me, you might already know that I’ve been diagnosed with a Chiari Malformation (Type I). And I really need to write about that.

I started writing on Facebook, but then I worried that it would be too much, even for the friends that care and want to know. I tried only talking about it with a subset of friends and family, but it’s just NOT the right platform. I need to blog. Need. The plan is, when I do get the blog back in perfect order, I’ll create a subdomain and blog about Chiari separately from my politics.

Before I get too far in, I need to explain something – I am no longer the spelling bee champion and perfectionist typist that I once was. Most of the time I correct myself, and thankfully I get those red squigglies to help me along. But, I also seem to mix up the order of words and other such things. So, even though I’ve always been the one to give other people shit about typos and grammar mistakes, I hope you’ll give me a break, or at least keep it to playful teasing when I make those errors.

What Is A Chiari Malformation?
I like to think of it as a problem where I’m so smart that there’s not room in my head for my brain. And it’s pronounced KEE-ar-ee. I’m pretty sure they don’t use that in the official medical explanations, though. So, I’ll give you the formal explanation, and then a Just Plain English version.

Chiari Malformation Type I (CM) is a neurological disorder where part of the brain, the cerebellum (or more specifically the cerebellar tonsils), descends out of the skull into the spinal area. This results in compression of parts of the brain and spinal cord, and disrupts the normal flow of cerebrospinal fluid (a clear fluid which bathes the brain and spinal cord).

To me, with my current understanding, which gets better and better all the time, it means that the lower part of my brain, aka brain stem (cerebular tonsils, to be exact) sits down below my skull (foramen magnum). Because of that (herniation), (1) spinal fluid isn’t flowing normally, and (2) there’s pressure on that part of the brain. I’ll get into the symptoms in another post.

Ooh, Pictures!
So to make things a bit clearer, I’ve found a couple of images that I think explain it well. The best one is from Mayo Clinic, but they’ve got their copyright notices all over it, so I’m not going to post it here. If you go look, the yellow part sort of shows where the cerebular tonsils are not supposed to be. Another really good to show lines and such to indicate how low they should go is at the American Synringomyelia & Chairi Alliance Project. I may post my MRI scans here, but I’m not certain whether I want to yet, so for now you’ll have to make do with this scan, which is coincidentally the closest that I’ve seen online to my own:

Click to enlarge Chiari I MRI Scan

What Treatment Options Are There?
They can either treat the symptoms, which is what I’ve been doing for the last year and a half, or they can do surgery. I should note here that many, if not most, people with a Chiari Malformation do not experience symptoms. So, treatment is 100% about the symptoms. The symptom treatment isn’t enough for me, so it looks like I’ll be having surgery, which is the other treatment.

Surgery Description

My explanation: I become a zipper head, they go in at the base of my skull and “hollow out” the neck vertebra to make room for the hernaited ferebular tonsils.

The real explanation:

This is a done by a procedure called a posterior fossa decompression. The surgery is performed by creating an incision at the back of the head into the upper part of the neck. The muscles are spread to either side and the occipital bone and the back of the C1 vertebrae are visualized. Skull bone and often the arch of C1 (in some cases C2) are removed. Under the bone is a tough membrane called the dura. The surgeon then opens the dura. Here, the surgical technique varies depending on the practice of the surgeon. Some surgeons open the next layer called the arachnoid and may shrink the tips of the tonsils with electrocautery. Others do not open the arachnoid. Studies to date do not tell us which is best procedure. There is no documented untoward effect from shrinking the tonsils. The important point is to create more room and thus remove the crowding. Most surgeons will then sew a patch of material into the dura to enlarge the foramen magnum. The wound is then closed with stitches to bring the muscles together and stitches or staples on the skin.

What are the Risks?
A lot of people have asked me about the risks, and whether I’m anxious about the surgery. I’m not, at least yet. I am at a point where I’m relieved that not only do they know what’s wrong, and it’s not all in my head (oh, wait…) but there’s something they can do to fix it, besides giving me pain pills. I feel very informed, and while I can’t get my insurance to pay for an out of state doctor who specializes in treatment of Chiari, the doctor I did choose seems to have a decent reputation, and isn’t brushing me off (that’s another story). In addition, here’s one explanation of the risks:

There are some risks to surgery including pseudomeningocele (leak of spinal fluid through the membrane repair creating a fluid pocket in the muscle), infection, either in the wound or in the spinal fluid (meningitis), occipital neuralgia, and neurological deficit such as an injury, hemorrhage, or stroke. There are also the risks of any major surgery such as pneumonia, or cardiac problems.

I’ve had meningitis before, and so that’s not scary. And so far, I’ve not found very many people writing about having those kinds of things happen to them, or to someone they loved. I’ll be talking to the doc about it, though. I’m interested to see what his opinion of the general risks and the more likely risks are, and to compare those to the ones I find online. One worry I have, because of having had meningitis is the risk of Syringomyelia, which is a story for another day.

Now that I’ve got those facts all out of the way, I’ll probably post more about how I’m doing and the specifics of my case in future posts. I have a select number of people on FB that can see my chatter there about this, but here, I’ll feel a little more free to talk about my symptoms when they’re bad, or how I’m feeling, or ask for what I may need (like a friend to go to lunch with) that I haven’t felt I could do before. I have plenty of support (and my little sis is moving back to help me recover), but as a single woman, I don’t have that one shoulder to cry on, or someone to listen when I have something to say. And this is the perfect spot for that.

Thanks for listening!

Blackout

Today, we are striking against censorship. Join us in this historic moment: tell congress to stop this bill now!

Write Congress Now!

I am writing to you as a voter in your district. I urge you to oppose the Senate version of S. 968, the PROTECT IP Act. The PROTECT IP Act is dangerous, ineffective, and short-sighted. The House version — just introduced by Rep. Goodlatte — is far worse.

Over coming days you’ll be hearing from the many businesses, advocacy organizations, and ordinary Americans who oppose this legislation because of the myriad ways in which it will stifle free speech and innovation. We hope you’ll take our concerns to heart and oppose this legislation.

Join The Strike!

Blog Interruption Possible

I’m switching to a new hosting account at GoDaddy, so that I don’t have to use the default WordPress designs, and can add neat-o widgets to my blog. Which means, that you may experience interruptions and weird things happening, as often occurs when attempting something like this. Fun stuff!