*waves* Hello there.

If I didn’t know any better, I’d think I stopped caring about this blog at all. The truth of the matter is that I’ve just fallen out of the habit of journaling… and that’s not a good thing. So, today, I’ve decided to write, even if it’s a little disjointed.

What’s Going On With Me

Today marks the 20th day that I’ve been off any kind of disease-modifying drug for MS.  I have to say, I physically felt better when I was on Copaxone than I do now. Over the last 3 weeks, the numbness/tingling in my back has become more prominent; I’ve had a lot more fatigue; and cognitive fog has been almost constant.

Why am I not on Tecfidera yet?  Because you can’t do anything with MS medication without jumping through hoops of fire.

Last week, I found out that Humana/Medicare had denied my request to have Tecfidera as my DMD (disease modifying drug) because I had not already used every other available DMD on the market.

Why have I not been willing to take Avonex, Betaseron, Rebif, or Extavia? Because they’re all injectable interferon medications – and all of them cause depression. As someone who’s been treated for major depression for going on a decade now, my neurologist and I agreed that they would be bad for me.

I did some homework on the whole process of getting medication approved after a denial, and called Humana Greivances & Appeals. I asked for an expedited appeals process (which means they have 72 hours to make a decision because the medication is necessary for a life-threatening illness), and contacted my neurologist to get them supporting information as quickly as possible.  On Saturday, I found out that I have been approved!

So, now I’m just waiting for the mail-order specialty pharmacy to call me to schedule delivery. It occurs to me, as I write this, that I can and should expedite that process by being proactive and calling them instead.

Puff, Puff, Pass?

Speaking of medicine and expediting things… Medical marijuana has been passed in the IL house and senate. We’re just waiting for Governor Quinn to do the right thing and sign it into law. I’m trying not to think things like, “It’s been 20 days since you got it, Gov! Get on with it!” and instead am being patient.

I haven’t been using cannabis much at all over the last several months. There was a time when I lived in CA, was doing a lot of psychological work on my PTSD, and didn’t understand dosing (and thought I could make all my emotional and MS pain disappear with weed), when I smoked nearly all day, every day. I was, very simply, losing my mind then. I am very glad those days are behind me.  Now, I only use it when I have a bad PTSD flashback  (which, thankfully is very rare nowadays) or my other medications just can’t get the pain-management job done, and I’m pretty much desperate for relief.  I think the last time I had a friend source some for me was in December, and I only bought an eighth then. I’ve still got about half of it. This is a huge difference from the end of 2008-early 2009 when I was living in Glendale, CA, and went through about 3 eighths a month.

I still miss CA’s set-up though, and it’s what I’m really hoping for here in IL. I want my “license to use” and to be able to walk into a secure dispensary, see what’s available, and choose the medication that is right for my needs. I miss the opportunity to decide what kind of weed I’m getting!  There are more than a hundred strains of marijuana, and each one affects you differently.

When you’re in prohibition-land, you can’t be choosy. You take what you can find, and what you find is not always helpful. Sometimes, it’s even harmful. You could end up with a strong sativa that wakes up your body and leaves you mentally foggy when you actually need an indica that helps calm anxiety and ease pain that lets you continue functioning normally within your day. Getting the wrong kind of weed has happened to me more times than I’d like to admit since moving here.  This post by Berkeley Patients Care Collective goes into much more detail about this, and gives recommendations of types of strains for the medical needs you might have.

I’m also hopeful that the bill passes so that I can buy concentrates and use something like the CANNAcig. It would be very beneficial to be able to use what is essentially an e-cigarrete that’s been modified to work with cannabis. It is less smelly and has all the benefits of vaporizing versus smoking.

I also miss edibles, which are even better for helping with body issues and aren’t bad for your lungs at all. I remember when we were in CA, Adam and I talked about the possibility of me creating edibles for the dispensary that I used to go to. I really like cooking/baking.  Now that I’m not having seizures all day, I might be able to actually do something like that.

So What Am I Doing?

Right now, I’m still “just” a housewife. I do laundry and dishes. I go to the grocery store and I cook. Life’s simple, and that’s not bad. I really appreciate that I can take naps when I need to and that I’m able to give Adam freedom from some chores that he doesn’t particularly enjoy which I don’t find offensive.

I also have been working pretty hardcore on physical fitness, tracking my calories and nutrients on MyFitnessPal and working out 4-5 days a week at the YMCA up the street, doing weightlifting and cardio with ActivTrax. I wish this Y had late afternoon/early evening yoga classes like the YMCA in Collierville, TN did — but if I want to do yoga here, I’ve gotta get there at 8:45 a.m. Frankly, I couldn’t get myself to 9 a.m. classes in college and I barely made my 10 a.m. classes in law school. My sleep schedule has basically nixed group yoga for me for the time being.

Since the seizures have more-or-less disappeared (aside from when I have pseudoexacerbations, relapses, or am trying technology that doesn’t jive with seizures), I’ve done a lot of thinking about whether or not I want to take the IL bar exam and become an attorney, and when it comes right down to it, I do!  But the test costs $850 and the prep course costs $2050. This means that before I can even attempt the test, I have to find a way to earn $2900.

I’ve been applying for jobs for months now with no response. The economy is fucked, and no one wants to hire someone whose last real job was 8 years ago. I can’t say that I blame them. Who wants to hire an administrative assistant with a law degree when you can get one without a J.D. for cheaper and she won’t want to move forward with her life in a year?

This has lead to me realizing that I should just market my services as a web & graphic designer again.  I used to make about $450 -$500 per project when I was freelancing. 6 or 7 websites could mean that I get to take the exam. I’m even thinking about hitting up a good friend who has a successful web design firm to see if he would want to outsource any of his front-end design work to me.

I was concerned with the idea of freelancing somehow messing up my SSDI (I need to keep Medicare), but you’re allowed to earn up to $14,000 a year without it affecting your status. You just have to declare it.

This means that I need to create a site for myself as a designer, first and foremost. Next, I need to build my portfolio and see just what work I have on the web that’s still up there.  I am, of course, procrastinating on this, because, well, it’s what you do when you’re unsure of your plans.

What I am sure of, however, is that my life has at least a bit of forward trajectory at the moment, which is nice. There was a while where I was concerned that I’d become that girl who sits around at home and “does nothing” all day long because the work she actually accomplishes is mostly invisible. (There will always be dishes. There will always be laundry. The house will always need straightening.)  I’m not so concerned about that now.

I am, however, concerned that if I don’t stop writing and get off the computer, none of my invisible work will be done today — so I’ll wrap it up here and say thanks for reading. ❤

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Disability & Your Relationships With Your Self And Others

Judgment. It’s not just for other people to place on you. Every one of us has certain standards and ideals that we hold ourselves to. I can’t tell you the number of times that I have read a statement that goes like this: “I’m not the [wife/sister/mother/friend] that I want to be.”  This is almost always placed in the context of disability, suggesting that MS, Lupus, Fibromyalgia, a cancer of some kind, or even seizures are to blame for the reason that the writer does not feel good about themselves.

It’s Not About What You Do. It’s About Who You Are.

If there’s anything truly helpful that I’ve learned over the last 7 years of battling MS and the last 5 battling seizure disorder, it’s this: You are not your disease(s). To everyone else in the world, you are the victim of your disease(s), and anyone who loves you wants to fight the disease itself because they see how it negatively affects you.

I had a particularly hard time differentiating my self from my ailments for a very long time. I thought that because I had these afflictions that they were a part of me – and that maybe they even existed as proof that I wasn’t good enough as a person. (Otherwise, why would God let me end up this way?) I considered myself a burden on my family and my husband. I hated myself for having MS, a seizure disorder, PTSD, and depression. I consistently put myself down for not having a job, for not doing the cleaning around the house, and for not being “my best self,” thinking inaccurately that “my best self” existed free from the challenges of disease. I became suicidal because I thought that the only way to end not only my suffering, but the suffering of anyone who had to care for me or bear witness to my pain, was to end my life.

When I was in the mental health hospital, on a 5150 (involuntary psychiatric hold), my husband said something very important to me, that I hold in my heart to this day.  He said, “MS or no MS, seizures or no seizures, you are my wife and I will always be here for you – because I want to be. Nobody held a gun to my head and said I had to marry you.  If you kill yourself, that’s leaving me, and I don’t want to spend the rest of my life without you.”

Prior to that, I hadn’t, even for a moment, considered that he wanted to care for me. I hadn’t let myself believe that I was desirable as a companion, regardless of ailments.  The delusional thinking that I was engaged in had me convinced that my disability made me bad for him, worthless as a person, and that by killing myself, I would be doing him (and the world) a favor. It never dawned on me that I was more than the sum of my problems. I was also me.

Finding Your Worth With Disabling Conditions

It has only been a few months since I started working with a therapist (Let’s call her “K”) to find out who it was that I had become and to get myself on a path towards who I want to be.

When we first met, K asked me the question “Who are you?”, the answer I gave was, “I’m a housewife who is on disability because of MS and seizure disorder. I failed the bar exam twice, so I am not a lawyer.” I defined myself strictly by my career and my disease. I ignored the fact that I am a woman first, a daughter, a wife, a person with a unique viewpoint on the universe. I forgot that there were other important aspects to my personality, like loving to sing and to cook and to help friends. I defined my worth by my ability to make a paycheck.

And that way of thinking had held true for a long time before I started working to change my way of being – for years, defining myself by what I could not do caused cyclical suicidal thinking.  I was, for a few years, a very miserable person.

It is only recently that I have come to realize that my worth as a person is not determined by how much money I can make, what things I can do, or what other people’s opinions of me might be.

She had me create a chart that said on one side “Worth =” and then I had to fill in the other side.  Together, we examined each statement that my “fill in the blank” chart created to see if the thought was rational or an ANT (Automatic Negative Thought) that we could challenge.

Sometimes, the statements were just plain silly – not even a believable negative thought, but just thinking that didn’t make sense.  Things like “Worth = Not Needing Help.”  I actually had let myself believe that I was only a worthy person if I never needed help. I had to ask myself, when confronted with that statement, “Who, in life, doesn’t need help from time to time? Does needing assistance actually negate a person’s innate worth?”  The clear answer was, “No.”

Then, there were other statements that were very true, like “Worth = Irreplaceable/Precious.”  “Precious” means that something is of great value and is not to be wasted or treated carelessly. It’s true that there is only one of you in the universe for all time. This makes your life immeasurably valuable. Because of that, you should not waste your life or treat yourself carelessly.

doctor

I was forced to admit to myself and to allow myself to really believe the truth: that being unique in all of time and space means that regardless of how I feel about myself, I am valuable and deserving of care. It’s objective truth.

What You Do Is Not Who You Are.

No matter what actions I take in life, it’s not going to change a few very basic things.  I will always be a human being (as opposed to “a piece of shit” – regardless of what my inner bully might want to shout at me). I will always be a daughter. Because I my parents chose to have another child, I will always be a sister. Because I have been lucky enough in this life to meet a man who loves me as deeply as I love him, I will always be a wife.  Nothing that I do or fail to do will change these designations.

So, I had to ask myself the really tough questions… “What does it mean to be a good human being? What does it mean to be a good daughter or good sister? What does it mean to be a good wife? What is goodness?

After reading through the dictionary and thesaurus and taking some time to really think about it, I’ve determined that a “good” person is one who is virtuous, genuine, and commendable; kind and benevolent.

Regardless of physical status, anyone can still be “good” and “worthy.”  Being “good” is a question of character, not whether or not you meet the arbitrary goals you set for yourself. It’s about being loving, sharing of yourself, and making the effort to connect with others, emotionally, on a genuine level.

So, stop confusing your worth or your goodness with your ability to do certain things.  A genuine connection with a precious person is all anyone could want out of a relationship.

Happy Saturday!

Happy Saturday, party people!

What’s new with you? Not a hell of a lot going on here. I know that this week has been bereft of entries, and sometimes that happens. At least when I do post, I try to make it quality.

This week, overall, has been a good one. It’s definitely had its ups and downs dealing with PTSD, though.

I think that its safe to say that there’s no comfortable way to tell someone in your family, who you care about, that they have triggered you, and not to engage in a particular activity around or with you again. You’re already neck deep in awful, so anything that comes out of you is going to be noxious.

And there’s certainly no comfortable way to say you’re sorry to friends when you’ve acted out, as though the false reality were real. It’s just a big ole helping of humble pie with a side of “fuck you.”

Fortunately, I know what humble pie tastes like and am okay with admitting my wrongness the moment I realize how totally not-right I am in situations. The unfortunate part is how frequently it happens, surrounding the economic climate, politics, and utter catastrophization of our future.

So I avoid politics now. I avoid political discussions, especially with Republicans. I avoid the news, which is really just set up to scare people about things they have no control over. I use a credit union, and I’m not scared of my birthday this year. 12/21/12 (Woo!)

I try to focus on the things that I do have control over, like the food that I eat, the people I hang out with, the jewelry I make, and the pets for which I care. There are better things to think about, like what to make for dinner.

Positive attitudes are crafted by choice, not by chance, and things only improve with a positive will.

I knew when I woke up this morning, I was gonna have a good day. What about you?

Mmm, Paleo Latkes, Love, Luck, and Leaving Behind Negativity…

Hey there, you beautiful reader, you. Welcome to Friday! Good morning!

I thought I’d start off today by giving you that Paleo Latkes recipe that I promised everyone for Chanukkah. I know that Chanukkah’s done for this year, however, tasty potato (or zucchini, or parsnip, or yucca) pancakes are delicious all year long!

I was searching for paleo recipes yesterday when I saw that Mark over at Mark’s Daily Apple had already created his own Vegetable Latkes Recipe. The comments section gives some very apt suggestions for folks who are looking to create a more authentic taste.

Not to be dissuaded from creating my own stuff, I chose to continue with recipe-making. See, not everyone in the paleo community is in agreement with concerns to potatoes. Some people say that the tuber grows in the ground naturally and that paleolithic man ate his fair share of potatoes. Others consider it forbidden. In either event, traditional latkes are always made with potatoes.

Epicurious.com has a great traditional recipe that is, by all accounts, paleo-friendly! So does About.com, if your preferred taste for potato pancakes includes the homogenized kind of gooshy-smooshy middle. (For me, it’s a must!)

I’ve made a few changes with my recipe to make the latkes a little less dependent strictly on potato for starch, and to give a creamy parsnip flavor that I love in the winter. I also incorporate extra virgin coconut oil for frying the latkes because it has a better flashpoint for frying and is a more friendly fat for those of us on the diet.

Rae’s Paleo Latkes

Ingredients
3 potatoes
2 parsnips
1 large sweet onion (or a 1/4 c. of onion powder)
2 large eggs
1 tsp. salt
1/4 tsp. pepper
1/4 c. arrowroot (or you can try almond flour – no promises)
1/2 c. extra virgin coconut oil for frying

Preparation

  1. Peel potatoes, parsnips, and onion.
  2. Grate potatoes, parsnips, and onion with a cheese grater or food processor.
  3. Place in a bowl of cold, salty water until you’re done with all of them, so they won’t turn brown.
  4. When ready to prepare the latkas, drain the potatoes and parsnips by spreading grated potatoes, parsnip, and onion on a kitchen towel and roll up jelly-roll style. Twist towel tightly to wring out as much liquid as possible.
  5. Reserve about half of the shredded vegetables in a bowl.
  6. Place the other half of the shredded vegetables in a food processor fitted with a knife blade.
  7. Pulse until smooth, and drain mixture well.
  8. Pour potato mixture into a large bowl, and add beaten eggs and the rest of the vegetables as well as salt and pepper and arrowroot.
  9. Pour oil into a very large, deep frying pan. Heat the oil over medium-high heat.
  10. Carefully drop 1/4 cup of the potato mixture into the hot oil.
  11. Flatten the pancake slightly so the center will cook.
  12. Fry for several minutes on each side until golden brown and cooked through.
  13. Drain on paper towels.
  14. Serve and Enjoy!

I love Latkes!!! 🙂

Good Luck Cooking Tips

Now here are some good luck kitchen tips for making these!

  • Use a bigass cast iron skillet if you possibly can. The more space you give yourself to work with when making latkes, the better.
  • Have your stuff ready to go before you start dropping pancakes in the pan, and work in a pattern. Going clockwise always seems to work for me.
  • These things cook much more quickly than you think if you’ve pressed em down to make them thin, so you can drop one in the oil, then make the next one, then drop it in, and then move the one you previously dropped into the position AFTER the one you just put down, but flip it over.

As for Leaving Behind Negativity…

I am on an indefinite social media hiatus to protect myself and the folks I love the most from the awful effects of my PTSD as it relates to the political climate in America right now. What can I say, the Prez did a good job of scaring the everloving bejezus out of me by signing the NDAA. He lit my crazy candle. 🙂 And while I’m putting a lid on it, I figure it’s better for me and for everyone else if I realign with reality somewhere less embarrassing than than the permanently recorded media outfits.

I miss the hell out of Facebook, though, because I think, all day long almost, “I wonder how THIS friend or THAT friend is doing.” So, I’ve decided to conquer that by writing an email every time I think of someone – just pinging a, “Hey, what’s up? I was just thinking about you and sending love.” And really, if anyone truly minds, then they’re not a quality friend to have anyway, right?

I mean, how much would I hate it if people were emailing me? NOT AT ALL. Heck, if I get really lonely, I might even re-learn the social skill known as talking on the phone. (Don’t tell anyone.)

Hope everyone’s ready for a good weekend. I know I am. 🙂

Day 4 of 5: Current IV-SM Treatment – Important Side Effect Notes

Usually, this is the kind of thing I save for Patients Like Me, but after reading today’s Trauma Tuesday on PTSD and learning of the concept of “passive suicide” – something which, I’ve apparently been engaging in most of my life… (a lifestyle of recklessness and hanging around those who are reckless, not really caring if you get hurt; cept I’ve spent more of my life toeing the line on both sides… sometimes earned me the nickname “Goody toe shoes,” sometimes, “Mom,” and all too often, “Bitch.”) I feel it is somewhat necessary to say this:

Weed is a necessary drug.

I did not inhale cannabis this morning, as I usually do. When I did not do this, and I had my IV-SM infusion, I ended up a having horrible time with suicidal ideation today. I also experienced PTSD flashback memories. I just remembered them: no hallucinations or anything. It was just very vivid. I am referring to some of the repressed memories that I recovered during EMDR treatments.

It was not until I was willing to smoke out that I was able to calm down enough to be okay tonight. I needed Adam to tell me to use it before I realized I needed it because physically, the IV-SM was masking the pain entirely. I just kept suddenly crying and not knowing why.

I need to treat the medical marijuana exactly the same as I do my pills. I need to be better about measuring the stuff and when I take it.

Bright side: No seizures.

Oddly, I feel this is winning. Or at least in the right direction.

Healing Properly Is Not Easy

So for those of you who aren’t either regular readers of the blog, or who need to be caught up: I have multiple sclerosis as well as a seizure disorder brought on by perfectly placed lesions in my brain.

Some of my seizures are caused by the seizure disorder and can be characterized as “epileptic (though I do not have epilepsy!)” and some of my seizures can be characterized as “pseudoseizures” or seizures brought on by activity in the subconscious. (Yay, for fun time in psychology!)

Through a lot of work with several doctors, we discovered that my subconscious was actually showing me repressed memories, and that I was having PTSD flashbacks during the seizures. This began my work with EMDR (Eye Movement Desensitization and Reprocessing).

I don’t know that I’ve talked much about the effects that going through EMDR has on your life. Being a time traveler does not simply give one the sense of relief that the psychologists suggest, at least in the short term, because there is a backlash once you make certain changes that need to happen in your life. “Breaking cycles” hurts. That’s where the true bravery begins.

Sure, when you’ve got the paddles in your hands and your shrink across from you, and your eyes are closed in real life but in your mind’s eye, and through your body you’re facing the monsters of your youth with all of you, you feel that relief – and suddenly some of the pain that wracks your body leaves… and you gain back some of your mobility…

But back in real life, an hour or so later, you still have to actively choose to stay away from people who hurt you thoughtlessly. Even if you love them so much it hurts.

When you time travel back in order to heal, and you feel punishments and see things as a child all over again – things that have haunted you your whole life – things that happened by their hand or because of their neglect – and you come back and forgive them and then watch as things seem to happen all over again — you’re participating in it.

And that’s not learning or growing.

So, even though I love my mother more than words can say, and I’ve been torn up about this for days already, I’m holding firm on my stance of no contact outside of a family therapy setting right now, despite tomorrow being Mother’s Day. I’m not strong enough in my sense of self to not cave into the idea that everything bad that ever happened to me was somehow my fault for not showing her that I loved her enough.

I sort of hated Adam for calling the cops on me for walking into traffic at first. There were no cars coming. I mean, what says, “I love you” like 72 hours of involuntary commitment for being a harm to one’s self?

But then I realized something: Nothing does say “I love you” like “I won’t let you die.”

So, the least I can do for him is not restart the cycle, and let myself learn to heal.

Dr. Oz’s Show on Medical Marijuana

Hey everybody!

My momma let me know that Dr. Oz did a show the other day on medical marijuana, and she was all excited because with me having MS & seizure disorder (and currently dealing with PTSD, though it’s starting to get much better!), it’s been a 180 in my family’s ethics going from a hardcore straight-edge no-drugs stance to being happy with the effects of medicinal cannabis, which has greatly improved the quality of my life. (One of the benefits of livin in CA!)

I believe that the decriminalization of medical marijuana is not only important but necessary to help thousands of people who share similar pains to me. Some of you might be interested in seeing the clips from the show too, so I tried to put them in the order of the show for you.

Medical Marijuana: The Hot Debate, Pt 1.

Medical Marijuana: The Hot Debate, Pt 2.
Montel makes the best points ever about how medical MJ helps and the current hypocrisy in federal law.)

Medical Marijuana and MS: One Woman’s Story,Pt 1.

Medical Marijuana and MS: One Woman’s Story,Pt 2.
My theory is that the bald guy with the glasses is totally unaware that he is the epitome of what a TV pinhead is supposed to be. Real asshole or paid asshole? You tell me. 🙂

Marijuana: Why It’s Prescribed, Pt 1.

Marijuana: Why It’s Prescribed, Pt 2.
This video actually has an epilepsy patient in it!

My seizure disorder is very similar to epilepsy and reacts very much like it. The only major difference between my seizure disorder and epilepsy is that it is not considered epilepsy because the electric activity of my seizures lines up directly with the footprint of the lesions in my brain that were caused by my MS. This is why the Ketogenic Diet (which was developed by my neurologist) won’t work for me, and why many of the usual medications that help folks with epilepsy tend to not work for me. Fortunately medical marijuana does! 🙂

Medical Marijuana: Is It Safe? Pt 1.

Medical Marijuana: Is It Safe? Pt 2.

Medical Marijuana: What This Means to Your State

Also, I thought folks might be interested in what states currently allow medical marijuana and what the laws are, so here is the NORML page that keeps current on all of that.

I hope y’all enjoy! Happy Saturday!