Sunday, January 27, 2019
I guess I have some catching up to do here. Last I wrote, I was trying Aimovig, the first anti-cgrp medication approved to prevent migraine. THE FIRST EVER MEDICATION INVENTED PURELY TO PREVENT MIGRAINE!!! Do you get why I am advocating and trying to bring awareness to migraine all the time now? Anyway, after 4-5 months of that not working, and some major stomach complications along the way, we switched to Ajovy, the second of this class of medications to be approved. Ajovy has been a mixed bag. The stomach complications aren't totally resolved, but are manageable. My first month on Ajovy, I felt I was definitely trending upwards. The second month I felt I hit a brick wall. This past month, I don't see any trend. I haven't left my house in almost 2 weeks. Is that purely pain, migraine pain, or fibromyalgia pain, or depression, or my new hermit tendancies picked up the past year? I am not sure. It's a mix of it all, I think. I take another shot of Ajovy and see Dr. Young, the headache/migraine specialist in mid-February. So, we'll see. I have a (shorter than I'd like it to be) list of everything I can remember helping a bit over the past 20 years, living with Chronic Migraine. I am going to ask him to do everything safe all at once. Something has to give.
Sometimes I try to be upbeat and helpful on this blog--whether that shows or not I am not sure. I don't want people to feel that they go through things alone. I try to bring awareness. Right now, I am writing just for catharsis, and therapy. I'm writing to hope to dampen the storm raging and lower the water levels around me a bit. I'll explain the metaphor in a minute.
I added the trigger warning above because honestly, I feel as though I am just surviving right now. I added loneliness as a warning, not because I am alone. I have lots of people who I love that I can talk to if I choose to. But I don't think anyone who is really Depressed ever feels they aren't in it alone. I am not happy, am not thriving, am hardly functional most days, and just overall feel overwhelmed. The Depression (capital "D" Depression) has set up shop in my head and isn't seeming to budge for much. It's like I am trapped in a severe rainstorm, and I have no real shelter. I talk to my husband or others, and I feel like I have a temporary umbrella over me. But in the end I'm in a place where the water is rising and an umbrella is only a temporary shield. At some point I won't have my head above water anymore. This isn't a cry for help. I tread water really well (literally and metaphorically) and can do it a long time. I don't feel at direct risk at the moment, but unfortunately, I have enough experience to know that can change quickly.
I never know for sure where or why these feelings pop up. I know Depression is a chemical imbalance, not just a feeling. Why is it worse at times than others? I don't know. Does anyone? Maybe the Migraine pain and accompanying symptoms, the Fibro pain and accompanying symptoms, and being a hermit all at once doesn't help. I know it doesn't help. But who wants to go out or be around people when your head and body is screaming at you to go into survival mode and just protect yourself in the quiet darkness of your home? I still have freaking Christmas presents to deliver.
Everyone knows that politics is a passion of mine. I have tried to have some productive political discussions this week that lead to no where. It makes me question the motives of people that I don't want to have to question their motives. Other than that discussion, I can't even really handle politics right now. It's too dark, it's too depressing. I had to stop watching the news after Trump was elected. I found myself having physical reactions to his voice and things he was doing. I read the news, to the extent possible, but with a screaming migraine I don't catch all I should or need to to be really effective politically. I had to sit out the 2018 election cycle largely. That hurt. I don't want to do that again but I feel everything I care about is just too much right now. That sounds so weak. I hate letting people down. I still have ideas I want to accomplish and people I want to work with, but I am not consistent. I am writing this at 4 am-ish. That means tomorrow will probably be a waste. Maybe not. I never know. But not having any sort of a regular sleep cycle is bruising to my chronic pain issues, my ego, and everything I want to do. When your schedule doesn't match up to virtually anyone, it's hard to collaborate on anything. And the guilt from that, which I know I put on myself and doesn't come from others, can make it harder to breathe than I'd like.
Politics was what saved me once. I floated, floundered actually, for years after giving up law school and a career, feeling useless, purposeless, just less. Then I got involved in politics and all of a sudden, even though it's not a money-maker, I at least felt a purpose again. I felt I had a cause I could spend energy, time and thought on. I felt I might be even good at some of the background stuff. I have never really felt a strong urge to run for office, but I feel like helping put the right people in office is just as important, and something that never has to end. I am not term limited from that! Volunteering is ideal for people with chronic illnesses. No one fires a volunteer, if that volunteer is helpful. They are just happy you show up. That's been my saving grace a long time. But right now, I feel I am going through the motions on the few days I can do anything or try to care about that.
Oh, I have psoriasis now. It's red, itchy, and scaly. My hands shed skin regularly like a snake. It's gross. I am fortunate it's mostly contained to the elbows and hands at the moment. Sometimes a knee or ankle will break out. I am on methotrexate now. Trying to get a light box for light therapy. Waiting on insurance to decide that. Great news about methotrexate, it's a chemo-type drug so my hair, my luckily incredibly thick, enough hair for multiple people, is falling out. I'm not too vain about my hair and my experience with meds that cause hair loss (Depakote, I think it was) is that it will take many, many months before it's noticeable, but it's bothersome as heck to have handfuls of hair in my sink and shower daily. Well, not that I manage to shower daily. It's too big a chore and painful on my head and skin at times. No worries, I take care of things before too much grossness sets in. But I hate the hair just falling out on my shirt and feeling like a bug crawling down my arm or on my back regularly. Ick. I just want to shave it. My husband never tells me what to do with my hair, (lucky for him, I doubt I'd listen anyway) but I am sure shaving it voluntarily might be a stretch too far, even for him.
BTW, my long term therapist retired. That sucked. I thought it'd be worse, but I am happy for him. For his sake, he needed it. But now I am trying to get a new therapist adjusted to all things me. I forgot how hard that was, especially when you are too sick to make most of your appointments. I don't trust therapists right away. I've found myself hospitalized before because of that. I mentioned some of these feelings to him at my last appointment, only to be told that maybe I should go to a hospital. I haven't been back. I will go back. I just have to make him understand that I have a dark sense of humor about life or death and if I go to a hospital every time I feel this way, I might as well set up residence there. I don't need to be told to go to a hospital. I need to be able to talk this through without people overreacting. I need to be able to vent, cry, tell someone that death seems better than this, with them still understanding that there are people and things I love, I adore even, and I am trying with all my might never to do anything to hurt them or complicate their lives.
If this is published, which I haven't decided on yet, it's going to scare some folks I am sure. My mom and aunt are going to want to move in and think I should never ever be alone. Dad too. Maybe my brother. Nope. That's not what I need. I just need to get this out, send it into the ether somewhere, and hopefully be able to breathe and dampen the storm raging in my brain a bit.
Don't worry, if you see me, I'll do my best to smile and be happy and be the person you expect to see. Is that good or bad? Is it being true to me, or protective of me, or protective of you, or just a fake version because it's who I want you to think I am? I never know and almost 20 years of therapy hasn't helped me figure it out. When my therapist retired I bought him something that said "I'm a therapist, not a magician!" And it's true. Therapy is good and helpful and I've always said I recommend some therapy and prozac to just about everyone I know, but they can't crack my head open and clean out the bad stuff and feed the good. They can't crack my head open to even see the good and bad. It all depends on me really, and I know it doesn't help that I don't trust therapists and doctors right away. They have a lot of power over your life. As I said I've been hospitalized before for sharing too much with a doctor who didn't understand me yet.
At this point I am just rambling and I am going to stop. Writing is cathartic. If you read this, you can know where I am, and what I am feeling, but don't add a lot of additional worry to yourself. I am not at risk. I just need to not have this inside me. So now it's out there, where ever the Interwebs takes it.
Thursday, October 4, 2018
I have pondered writing this for some time. As writing is therapeutic for me, and I think today of all days women need therapy and solidarity, I decided today, I would write it.
This potential SCOTUS appointment has opened so many wounds for so many people. I don't want to bore you, shock you, or whatever with every single event that's happened to me to make me feel dirty, less than, or endangered, but I do want to tell you what I think is the worst event.
The worst event that happened to me, a boss masturbating in front of me, happened years ago. I don't know the month, I don't remember why I was in his office, and I don't remember many details. If I were back in that workplace, I doubt I could even remember where his office was. But I remember the look on his face and his hand, moving back and forth. And remembering THAT is enough to make me nauseated all over again.
I remember hiding from people the rest of the day, I remember thinking my husband or brother would kill him if they knew or they would not let me go back to work, and we needed the money. I remember thinking, this is the HR manager doing this. Who do I even report it to? How would I prove it? I had just started working there, why would people believe me over him?
There are more reasons than you can imagine why a woman does not report things like this. Often, unless you are actually raped with some evidence, women haven't even been taught to be certain what assault or harrassment is.
Men and parents have such a huge part to play here. If you aren't teaching your sons about consent and protecting their reputations the way you are your daughters, you are doing us all a disservice.
I developed early and like to wear trendy clothes. Sometimes they show my figure. I have typically been small and have some curves. None of this means that anyone has the right to my body, or that my body is a threat to a man's self-control. A man's impulses should not threaten me at all, in a perfect world. I can control my impulses, as should everyone else in the world.
I grew up in a "purity" church, but there was a double-standard. Those people at that "purity" church probably think Kavanaugh is a-ok, because of a few key issues. I promise you, if you ever gave a rat's patootie about me and all those young girls like me in church then and now, HE IS NOT OK. This has brought more pain to more women than you can imagine. There are tons of other judges who will rule as you want them to, without these allegations against them and who would not have a total meltdown in front of Congress. Judges who would beg for an investigation to clear their name. Judges who could not have friends come out and say they've lied.
I have a friend who won't even kiss a girl without getting permission first. I used to think that was kind of funny, now I respect that so much. All people could learn from that. A simple, "is this ok?" Or even. "I'd like to kiss you...." would not ruin the moment but would matter so much.
So what do we do now? Call your Senators. Especially if you voted for them, but even if you didn't, call them. Tell them you voted for them (if you did) and how disappointed you'd be if they voted to confirm Kavanaugh. Tell them to demand better for our highest court, the only lifetime appointment I'm aware of. Call (202) 224-3121 to be connected to your Senator.
As I said, there are a myriad of reasons women don't report. Even if your father becomes President, you may keep quiet. Read Ronald Reagan's daughter, Patti's story, here.
Republicans, ask yourself how you would feel if Donald Trump and Republicans treated Reagan's daughter the way they've treated Dr. Christine Blasey Ford.
Not believing is one thing, but mockery is so disrespectful and childish. We deserve better, all around.
Monday, June 18, 2018
I received 140mg of Aimovig this morning, injected in my thighs. It comes in two, 70mg pens. So for a 140mg dose, i received an injection in each thigh. I had no immediate reaction except slight burning. The nurse was insistent that we not film the injection, but direct people to the patient section at Aimovig.com instead. The patient insert that comes in the box is very informative as well.
The second dosage will be delivered to my house in less than a month. It has to be refrigerated, so we have to set up delivery when we can sign for it, which may be a hassle for some.
About two hours post injection, I had a uh, intense stomach reaction. I think that may be more likely at the higher dose. I've heard of that happening to others as well, so that's why I attribute it to the shot.
Although I was only scheduled to see the NP, my doc stepped out to say hello. One of his first questions was what are you doing for Democrats in Arkansas? He gets me. I love that. I also understand that he knows a good gauge of how I feel is how functional I've been in working for the Party or candidates, and in how I much I've pushed myself to do those things.
Also, because we both agreed that neither of us know how to say no to causes we care about, should this shot work, I'm supposed to help him bring a "Miles for Migraine" run to Little Rock to raise research funds.
Someday I'll learn.
Please, ask anything I failed to cover. I'll update throughout the month.
Apologies friends, I've ignored the blog too long. As I was taught, if you don't have anything nice to say then don't say anything at all. (That didn't always stick...) But, at any rate, there hasn't been much good to report on the migraine front in at least 6 months so I've just kept quiet.
But today is different. Today I get the much anticipated Aimovig injection. So, I'll post about the injection, and if I can, I may even video the preparation and injection so those of us who don't have it yet know what to expect.
Please, wish me well. And stay tuned!
Tuesday, September 26, 2017
When I started this blog, I told you it might wander a bit from pain, to politics, to whatever. Today, it's about politics. Because I am really happy that because of the actions of people who have the right to express dissent, a healthcare bill was killed that would've taken healthcare away from many Americans. I am happy that I had the right to call, visit, march, and express dissent to my Members of Congress. You have the right to do the same.
I had a conversation with my Dad yesterday about what is happening in the NFL right now, and how they are coming together in solidarity because the NFL itself has been attacked by our President, and because the #TakeAKnee thing started because the flag doesn't represent the same thing to ALL of us, as it should. My dad, being the soft-hearted, America loving guy that he is, got almost tearful when he said he wished this controversy didn't involve the flag, because of what this country and the flag means to HIM. Being the ever rambunctious daughter and devil's advocate that I am, I explained that the flag doesn't mean the same thing to a black man or woman who is being systematically oppressed, sometimes even killed in the streets, and that THAT is what the protest is about, it really doesn't have much to do with the piece of fabric that has been sewn into our flag at all. I also shocked him when I told him that I had just found out that the guy who may be my husband's best friend, and who is a big, happy black guy that my parent's love, was harrassed by a cop, I assume a cop from my town, who better hope I never find out who he is, when this happy black guy was coming to my house to help us move.
Yes, this cop pulled the guy over, driving a nice car, legally, and used his gun to tap on the friend's car window. I call that harassment and WAY OVER THE LINE! This is systemic. It affects all areas of life and all classes of people. This happy black guy has two precious kids that he has to explain to about why people are mean to each other, why cops shoot some people and not others, why it's OK for our President to use language they get in trouble for, etc. It breaks my soul to think of those two kids, whom I love, growing up not knowing whether they can trust the police or not, and knowing that they don't get to be regular kids in a large sense, because of the color of their skin. They have to be above reproach, not wear hoodies, not get into the regular trouble a white kid could get into, because they don't know if the cop who deals with them, or teacher, or superintendent, will be racist. And make no mistake about it, RACISM is what this is.
So, whether you want to boycott the NFL or #TakeAKnee, it's up to you. But if you want to take away someone else's rights because the color of their skin, or some other reason that you deem them to be an "other", that's not OK. I hope you will stand with me and say not just NO, but HELL NO, to racism in any form. I don't care if it comes from family or loved ones. You can say, "That talk is not allowed in my house or around me." Period. You have the ability and the right, and I would say the obligation to say that. I will be saying that from now on. I am compelled to say it. I am compelled to love all people, for I was taught we were all created in the image of God. That's an image that is worth protecting, loving, preserving, and giving every right that I, as a white person in this country, have.
I have to find a way to respect my Dad's experiences that bring him almost to tears because he loves this country and the flag that represents it, and also respect my dear friends of colors experiences that tell them that they are not yet equal. That's what #TakeAKnee is. It's a peaceful, non-disruptive form of protest. Yes, it IS protest and protest by it's nature is designed to make people uncomfortable. It's designed to wake us up from our protective shells, the environments we build for ourselves and make us recognize that we don't all have the same experiences in this country. But we can. We can work together, to respect each other's experiences regardless of skin color, class, zip code, country of origin, etc. We can respect each other as humans, as God's creations. Will we disagree from time to time? Absolutely. Thank heavens under our Constitution we are allowed to disagree and express our disagreement, not only with each other but with our government. We can strive to make this a more perfect nation by dissenting when needed. By an obligation to love all God's creation, if not because they are God's creation then do it because we share this planet, and common goals, to see our children raised safely, to be respected, to feel love, etc. with them.
Stand for the National Anthem if you choose. #TakeAKnee if you choose. But either way, know that racism is a problem in this country, rights aren't handed out the same for all colors right now, and we are not a perfect nation. Perfection may not be attained on this earth. But we still can strive for it. We still can make each other uncomfortable at times because in that uncomfortable-ness we grow. We can strive to see each other's points-of-view. WE CAN STAMP OUT RACISM IN OUR HEART'S, and we can let others know we won't tolerate racist views. WE CAN DO THIS. I know we can. Will you? Will you join me?
Sunday, August 13, 2017
There are men and women in riot gear and carrying guns with freaking tiki torches marching and giving the Nazi salute in Charlottesville, VA, today. A state of emergency has been declared.
And our President? He's saying there are extremists and problems "on many sides".
He said it twice. "On many sides." (http://www.cnn.com/2017/08/12/politics/trump-charlottesville-statement/index.html) I guess he needed to make sure his supporters heard that.
The more I think about DT's "on many sides" comment the angrier I get. There are times when both sides are at fault for things, and equivocating might be prudent, but THIS is absolutely not one of them. Normalizing white nationalists and Nazi wannabes is not ok.
Being a white nationalist or Nazi wannabe is not ok. This is nothing but a treasonous display of hatred, and it's wrong. It's domestic terrorism with injuries and death, and it's designed to terrify and violate the safety of any "other". I can't imagine how my non-white, non-straight, non-Christian friends feel. It's America in 2017, and the people with torches didn't even care to wear hoods. Think on that a second. They are comfortable enough that in 2017 in the US, their views are so accepted they don't even bother to hide their faces.
Trump can make off the cuff remarks that might lead us into a nuclear war, but he's extremely aware of his words today, and made sure his supporters heard that "many sides" were wronged or whatever. No. White people are fine with nothing to fear but each other and accidentally shooting themselves with the guns they are allowed to openly carry.
This President got elected by the "dog whistle" call to these groups. And it makes me ill that people I know and love couldn't, or wouldn't, see it.
All humanity matters. But some people make themselves almost subhuman by their actions and the hate they spew. This is what we saw today.
I hope to see all people, but especially my white friends and family, unified around support of those in Charlottesville who've been terrorized tomorrow. There are multiple vigils in Central Arkansas to attend. There are many anti-hate groups to support, nationally and in Charlottesville and the state of Virginia.
This moment requires action. Get involved to save our country from it's worst demons. If you don't know how or what to do, ask. I'll gladly help you figure out what you can do. Start with denouncing the hate we are seeing and denounce the President who won't denounce the hate outright for himself. That's the least we can ALL do.
I believe in free speech and the right to peacefully assemble. But I also believe that no one has the right to terrorize another. And the fact that this is done in our US President's name, and he won't call them out on it, is sickening.
Welcome to Trump's America, folks. Are we great yet? Sure doesn't feel like it. It feels pretty awful, sickening, and disheartening. But hey, there's always the specter of nuclear war to look forward to, right?
Where did my country go?
Wednesday, August 2, 2017
I had a doctor appointment a few days ago. I knew at the appointment a migraine was coming, because I could not think of words to save my life. I made it home, only to sleep through dinner, which I also ended up doing last night. Since I don't eat a lot during the day, skipping dinner 2 days in a row isn't good.
I woke up this morning so weak and sick I could barely make it to the bathroom and knew there was NO way I could get to the kitchen for food or meds. Luckily, my husband's job affords him flexibility to come home with food in hand at 10 am-ish. And luckily my phone was charged and handy so I could reach him.
I woke up again, still weak and headachy, everything hurting with fibro pain, at 3pm-ish. Since then, after asking the same question multiple times, my husband has asked "Are you sure you're ok?" I don't even know how to answer that. I'm as ok as I can be right now with my brain full of fog, hurting all over, and feeling like nothing will ever work as it should again.
But it will. I'll pick myself up and go about life as if all is ok again soon. But days like today and the past few, just kick my tail. I'm just a pile of flesh and bone right now. I'm here, but not. I've missed multiple meetings, had to cancel a trip out and about with my nephew, and just basically stopped life for a few days to wait this feeling out. I hate the missing out part of illness.
But I'm here. So that's something.