Posts tagged nuggets of truth
Happy Saturday!
0Happy 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?
Adapting to a Paleo Lifestyle
5This way of eating is not for everyone. Removing dairy, grains, and legumes from your diet is something that most folks only consider doing if they have a condition that calls for it or if they’re interested in being as nutritious as possible for their body in the hopes of life extension, which, if you ask me, ain’t a bad thing! (Maybe this way of eating is for everybody!)
Regardless of your reason for changing your day to day noms, there’s gonna be some “body backlash” – some “Hey! Where’s my bread and candy?!” coming from your system. It happens to everybody, whether you’re a bodybuilder or someone weak from a combination of many ailments.
The most important thing to remember when beginning or even maintaining a change in your eating habits is that long-term changes are what matter most. This means that occasional glitches or “cheats” are the norm, not the exception to the rule.
Does this mean that you should “cheat?” Heck, no! Why on earth would you want to self-sabotage? But are you going to anyway, despite your best efforts? Probably. And that’s okay.
It’s not like you’re making a small change from the standard American diet. Being a Paleo eater and following the Paleo Diet means giving up all the artificial crap that we knew and loved and that sustained us and brought us up to be the people we are today, for better or for worse. And the great thing about it is that we’ve come to the point in our lives where we’ve decided that we want to be healthier and to take a step towards feeling better by eating a specific way.
There’s nobody who’s going to punish us if we stray. Our bodies won’t reject the other food, and odds are we’ll just enjoy it. If something bad occurs, we’ll be able to tell exactly why.
If you’ve chosen this path, it’s because you’re doing it for yourself, for your health, and for those you love. So don’t ever think it’s all or nothing.
It’s meal by meal, bite by bite, day by day that you’re making your insides feel better and letting yourself heal.
The secret to success has always been the same: just don’t quit.
Day 4 of 5: Current IV-SM Treatment – Important Side Effect Notes
0Usually, 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.
You and Me and the MS makes 3…
0I’ve been asked, several times, how it’s possible for me to keep such a positive attitude when MS has had such a profoundly negative effect on my life. That’s a VERY fair question.
If you read my previous entry, you’ll notice that I’ve taken to personifying whatever symptom is affecting me, and talking directly to it. This is not an accident, and, believe it or not, it is not insanity either.
See, when I first was diagnosed with MS, I believed there was something wrong with me, and this lead to severe depression… because if the doctors didn’t know what caused MS, and they couldn’t fix it, odds were, it was somehow my fault.
Not only was I feeling physically miserable, but emotionally, I was in tatters because every physical ailment was potentially going to stick around forever, and it wasn’t just because of MS. It was because of me, since it was probably my fault that I had MS anyway, even though I didn’t know how I did it.
Then it got worse. I saw how badly my family and friends were affected by my illness. And since the illness was obviously my fault, I saw how badly I was constantly hurting my family and friends, simply by my continued existence with the disease. Enter suicidal ideation, stage left.
When persistent suicidal thinking enters the picture, rational thought has left the building, and it’s time to re-examine whatever situation you are in with a trained professional.
Fortunately (or unfortunately depending on your viewpoint), I was equipped to deal with this situation, having chosen to hospitalize myself for suicidal depression back in 2003… which, I now know to have been during an MS exacerbation that was pre-diagnosis.
The best thing that I took away from that experience was the knowledge that I should always trust my support network with the knowledge that I am having suicidal thoughts (because the worst thing you can do is keep it to yourself and let the shame spiral continue), and that I should always ALWAYS have a psychologist available to myself in case I needed one. So, when this occurred, I already had one in town with whom I had built a good, trusting relationship.
Dr. K (I prefer to call her Amy.) asked me a series of questions that made my life so much better.
“Did you actively choose to have MS?” Obviously, the answer to that was no.
“Can you control anything at all that the MS chooses to do?” Again, the answer is no.
“Do you have any knowledge of what the MS is going to do in your body prior to it happening?” No.
“If you could stop it, and make it go away, would you?” I just about SCREAMED, “YES!!!”
And then she said to me something that absolutely changed my entire life.
“Well, it sounds to me, then, like Multiple Sclerosis has a mind of its own, and is an uninvited guest in your body.”
Suddenly, having MS wasn’t a personal failure. I was carrying around an uninvited guest. No wonder I was so tired all the time!
Through later sessions with Amy, I learned to regain a sense of self and a sense purpose and to improve my relationships by making room for MS in my life — to recognize when I’m angry at someone vs when I’m angry at MS, so I don’t do things like yell at my mom when I should be writing journal entries.
I’m learning to honor MS’s needs by going to bed when it tells me it needs to, and eating the right foods, so I have more time to do the things I want to do.
AND, now that Dr. Zamboni’s found out about the vascular part of our disease, it’s even less likely that developing MS was my fault to begin with. Guilt = GONE.
And that’s the story of how my MS ended up with a personality, and I ended up having the disease while still being upbeat about life.
I do it for love, love, love love…
0After over 6 months of dealing with seizure disorder, MS, and all the complications that have come with it (the emotional struggles and juggled responsibilities), Adam and I were both exhausted. Even the most loving couples have their limits – and we’d hit ours.
So, being the spontaneous kind of girl that I am, I hit Hotwire and wanted to see if their 4 star hotel at a 2 star price ad campaign was real. It *so* was. We went to the San Diego Hilton Resort for one night for less than $100, and we reconnected. We went to the beach, to Balboa Park, and all along the bay. I got to walk around and feel like my old self, and I didn’t have any seizures the whole time! (yay!) We remembered why we got together in the first place, and left feeling relaxed, refreshed, and with romance rekindled. (Come on, how often do you get to use alliteration? Besides, “R” is my letter.
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I know we can’t possibly be the only couple that is challenged by the stress, frustration, and sadness of chronic disease. I think we’ve got a good system though for making things better, and I think they’d be applicable to anyone in our situation. (more…)
I love my life. I want to die?
0It has been *such* a hard several days.
At first, I was going to write a post here about suicidal ideation and compulsion in people with chronic disease.
Then, I was going to write about coping with a lack of mobility.
Then, I was going to write about dealing with both of them in a relationship…
But to be honest with you all, I don’t feel like I’m in any position to write about what to do in any of those situations because I’m dealing with all of them right now and haven’t come out the other side yet.
I have to say, I’m worried about myself. (more…)
Hey, my blog is just like my brain! :)
0I tried to update and ended up losing all of my posts. Thanks to the powers that be, Google had most of my posts cached!
It’s so funny to me how much like computers our brains are “on MS.” We can have all the data in the world, but when you suddenly can’t access it, you freak out! Just like the intertubes of world wide webbie place, our brains go “OOPS! 404! FILE NOT FOUND!”
Fortunately, just like me, our brains *usually* find a way around it. It just takes a while.
Today, it took 5 hours. You want a good blog post from me anyway??? Gah. Fine.
Ladies and gentlemen, I give you but one piece of advice gleaned from today’s nearly tragic mishap. BACK YOUR STUFF UP! I don’t care if it’s computer files, your cell phone (You know, the one that keeps telling you to take your medicine!), your personal to-do list, the groceries you know you need to buy but haven’t yet written in list form, or even making sure you always have at least 1 pair of clean underwear, you have GOT to make sure you’ve got a backup.
And that’s really all I’ve got today. Shameful, I know, but my momma is in town, and frankly she’s more important than blogging. (Shh! Don’t tell anyone!) I don’t get much time with her, and I love her lots – so it’s off to either the mall or the park to spend some “quality time.”
Ciao for now, bellas.
Losing my sight, losing my mind, wish somebody would tell me I’m fine.
0Ok, I hate that Papa Roach song. Seriously.
That was yesterday, though. Blurry vision, brain fog, memory problems… kind of hating the way I have been living my life.
Today, I feel so very much better, but it’s seriously bothering me that there is SUCH a dichotomy between my mind and my body. For lack of a better way to say it, I don’t look like me anymore.
Starting in May of 2007, just before diagnosis, I’ve had almost a year’s worth of bed/couch rest. Don’t believe me? Here’s how it’s shaken out.
Botched blood patch for the spinal tap = 3 weeks in bed
5 Solumedrol treatments in the last 2 years = 5 weeks in bed
Preparing for the bar exam (Studying 10-12 hrs a day, on my butt) = 2 months
Seizure Disorder discovery and coming up on meds = 6 months
Sedentary for a full year out of 1.5 years. Ok. I can understand how I gained 40 pounds… but I don’t have to like it, and I sure as hell don’t have to take it lying down, especially since it took me the better part of a year to lose that 40 pounds in the first place.
Today, I started diet and exercise in earnest. So far, I have exercised for 40 minutes and for my meals, I’ve kept them under 400 calories each with very low fat and high protein & fiber content. I am SO incredibly glad that the medicine is working to the point that I have mobility again. So what if I can only do 5 minutes at a clip on the elliptical trainer. At least I’m doing *something.*
My fitness goal for this week: 120 minutes of exercise
My food goal for this week: Remembering all the healthy meals I used to love to cook before the MS monster came after me and I wasn’t able to cook.
I’m always looking for new, yummy, low fat meals that take fewer than 45 minutes to make. If you have any that you particularly enjoy, please share!
In that “God-has-a-sick-sense-of-humor” sort of way, the best way to fight the degenerative effects of MS is to exercise, eat healthfully, and to continue to live your life as stress-free as possible…so I’m game to give it my best shot.
Some days, it seems to be just too much to ask my body to work out… but I’m going to be giving it the same attention that I used to give practicing music – and I suggest any of you having trouble with motivation do the same thing. Take 5.
Take 5 minutes to concentrate on nothing but the particular exercise you want to do, whether it’s music, exercise, or any other skill you’re trying to gain. If you want to knock out all 20-30 minutes of practice at once, then good on you – but at least do 5. If you do it twice a day, you’re already halfway there. It makes the whole task seem less daunting.
Take a cue from these musicians and remember – laugh, and the world laughs with you. Happiness is contagious.
(BTW, I do not endorse any of their viewpoints. I just think they’re hilarious performers. And here I was thinking my performance days were over.
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