Feeling OK I guess

So my meds are now abilify 2 mg, Zoloft 100 mg, topamax 75 mg plus others, and I have been going to therapy for almost a full six months now. I unfortunately weigh in at 79 pounds as per my last doctors visit, when I used to weigh about 115/120. But the last week I’ve been feeling pretty good I guess? My energy has improved greatly, so has my mood and my apetite, and I’ve even started singing a bit again and willingly getting up before ten in the morning. Today was a bit of a brutal reminder just what a horrible experience this has been since I had to get new clothes since none of my old ones fit me anymore, and everything I tried on was too big. I did find a few things though, and my goal is to grow out of them. I want to be 115 again!!! Anyway the funeral for my great aunt was really sad but now that its over its like I can actually breathe, and I ended up doing a whole bunch of chores I had stacked up! I even managed a sleepover!!!! With a movie!!!! I’m going to be checking out the service dog agency soon, but I’m so glad I’m making progress in the meantime. I still get mad sometimes but now its weird. I’ve just kinda reached a point where I’m okay with my body. Like yeah, okay, there is an undercurrent of pain and panic in my life, but it isn’t the highlight. I don’t know. I’ve had a panic attack each day the past couple days - mild ones, but still attacks - and I just kinda calmed myself down and then kept on going.

Hahaha

So I’ve been watching a lot of beat poetry on YouTube and just thinking about things. My Great Aunt died yesterday and a lot of shit has been going on but finals are over now so I’m just planning on taking some time to work some stuff out and go help out with the dogs at the shelter with my sister. Volunteering, everyone is like yeeaah this will look so good on blah blah bllaaargh but I’m actually only doing it because hanging out with animals and taking care of them is like, the most therapeutic thing for me and right now I could use that peace. But yeah anyway. So I’ve been watching so much of this poetry stuff that now I’ve started thinking like it?? Which is kinda funny. Maybe I’ll write some of it down. One thing I really want to do is write one addressing this whole concept of privilege, which I know is super controversial but like. I’m just so done being told to ‘check my privilage’ by people who don’t know shit about anything and it’s like I read this fucking article just a moment ago that was like “Insanely Abelist Words!” or something and Christ but I’m just so done with people thinking I can’t stand a few words or stand up for myself or that I actually give a crap when people use the words insane or crazy or whatever. You know what’s fucking obnoxious? When my dad calls me a vampire because I can’t handle brights lights since my photosensitivity is really bad and can lead to nasty ass migraines. That doesn’t mean I need someone else telling me what offends me, or what offends someone else. If it isn’t you that is offended, back off. Ugh. You know what else bugs me? How completely shit my memory is like I’ve tried doing that whole improve your brain stuff and it doesn’t work. I don’t know if it’s the migraines or what but the worst part of it is when I actually know I forgot something but I don’t know what so then I question if there was ever anything to remember. Whatever. The only good news is that I’ll be applying for a service dog soon, my bestest friend just got out of boot camp for the navy so I got to talk to her on the phone for a bit for the first time since early April, I tried out something super different with my hair and it looks really good, and I might get to spend time with my Aunt and Uncle and my cousins up at their property which is like super forresty wilderness kinda deal and I love to just kinda help around the property with their animals and my Oma’s animals. (She lives on their property.) I tried explaining to my mom that going on a plane by myself is a little bit harder (she said that it’s something that lots of people just do) than ‘just doing it’, just like going to school everyday is a lot harder for me than just doing it. I hope she understands a bit better now.

The Journey to Accepting My Disabled Status

So I just made this blog after looking up how people have dealt with their chronic migraines and becoming a confusing mix of discouraged and impassioned. It seems like it’s not very common to have had them for the entirety of someone’s lifespan, because I’ve looked a bit (I just started looking actually) and I was only able to find one other person who had the same kind of situation as me. I thought I had been dealing with the constant pain, and the enormous amounts of absences and the homeschooling and the ever-changing meds pretty well considering I made it until high school without needing to see a neurologist and then managing to stay in school for enough classes to get good grades (my life has been one long, arduous trudge through first pain and then, without respite, make-up work) until senior year when I couldn’t do it anymore and had to go back into an independent study program to work around my illness. Then I graduated and took the leap into college and managed to work myself into a nasty case of anxiety that my medicine at the time (deprikote, on a high dose, and it had some antianxiety or whatever effects too) had been holding back. It took on the form of extreme IBS, which I had heard about previously on TV shows being mocked, and then later when my sister came down with it as a symptom of her own anxiety. Except IBS, or at least, the IBS (irritable bowl syndrome in case anyone does read this and wonders what that stands for) that I dealt with caused me extreme pain - added onto my migraines - and incredible stress, and six months of nearly ——————TMI———————— daily diherrea and trying to keep up with staying hydrated, school, my friends, and trying to appear like there was nothing wrong at all and I was sick finally came to a boiling point when my meds stopped working and I had to go onto another one, topamax, which stopped treating my anxiety and allowed me to experience my first panic attack. Fun. The panic attacks became regular visitors after that, and I stopped leaving my room except for periods of a couple minutes at a time. When I got on meds for those (Zoloft), I was still feeling it because of the low dose but it was so much better. I also started seeing a therapist for help with strategies on how to combat the anxiety, as I was told that since it runs in my family it is unlikely that it will ever completely go away. However at this time I had decided to try going into my second semester of college, just to see if I could handle it and to prove to myself that I wasn’t disabled by my problems and that I could still go and accomplish the things I want to do. Unfortunately with the addition of the anxiety, I had to sign up with the disability center at my school so that I could talk to my teachers and get them to recognize that I have a legitimate problem, and that I wasn’t just pretending. The problem with this though was that at this point in time I was severely against allowing myself to be labeled as “disabled”. I would think to myself, “Just because I have to live life differently than other people doesn’t make me incapable or disabled. A disabled person is someone with cerebral palsy or anything other than chronic migraines.” But if I tried to take a test in class my anxiety would act up so terribly that my mind would blank, my vision would narrow, and suddenly class was over and I had only answered 4 out of 15 problems. In the aftermath I was nearly in tears, this had never happened before unless I was having a particularly bad migraine, and I didn’t understand why I couldn’t perform like I could what seemed like a few short months prior. Then there was pain. Like the worst period cramps or a particularly nasty stomach bug, my gut cramped so hard that I couldn’t move very well, and I became nauseous as the other symptoms started sinking in. Not only was I on the verge of another panic attack, but I had also triggered a migraine. I popped my pills and sat quietly meditating, because I still had one class left and couldn’t go home. That’s when I started to have the conversation with myself about how being disabled doesn’t mean that suddenly I’m no longer me, but rather it’s just a label that people without my experiences have placed on me because they see that sometimes I have to stay home from school for 2 weeks straight and hide in my room with limited outside contact during that time, or wear my sunglasses indoors when the lights are too bright for my eyes, or how I take extra precaution on staircases because one of my main symptoms is vertigo/dizzy spells (I’m not sure how to describe the difference, but there is one), and I’m terrified of falling down when that pops up. These are the people who say to me as I enter my classroom after what seems to me as an eternity in hell and say things like, “Welcome back to the land of the living”, ” Class, we have a new student today”, and “I thought you died”. These are the people who see me only on my good days, who look at me and look at my school grades and my answers in class and how I interact with people and only know that oftentimes, I will be gone but somehow I always come back. I have spent my whole life pretending to be a healthy NORMAL individual. I am so done hearing people say ” Oh, migraines are like bad headaches right?” and “Just take a tylonel, aren’t you in pain? Don’t you want to try such-and-such medication, or food regime, or excerise that will make the pain go away?” Because NO. Migraines are not headaches. Headaches are a symptom, but when I am so nauseous I can’t take my meds for fear of vomiting, when I am unable to place one damn foot in front of the other or even sit up straight because for some reason my body has decided that performing correctly is not one of its necessary functions, when I start hearing noises and seeing dots and smears and all I can think of is the blinding panic that I have to get someplace safe because it’s going to be a big one, when I can’t remember the fucking conversation I had 2 minutes prior, or in the middle of a sentence I can’t recall any of what I was saying, when I start repeating words in rapid succession and I don’t realize something is wrong until someone starts laughing, when my face goes NUMB and SENSATIONLESS and I can no longer control the muscles around my mouth, when I become unable to articulate in any sense of the word, unable to write properly or to read properly because suddenly I am reading a foreign language that’s meaning eludes my grasp and I can only wonder why my native tongue has deserted me - ME, its greatest lover even as those around me desecrate its soft, unfolding wonder and yet I can’t help but think that those people. Those people who look at me as I sit there with my test in hand, wondering why everything must be so complicated for me, an uphill struggle to the peak of Mt. Everest with only my bare hands and no proper protection, these people who look at me on these good days where my migraines are NOT gone, no, never gone, not for me, and tell me that it it “Just a headache. Take some tylonel. It’s only like this because you’re a woman going through puberty, it’ll settle down and go away. Don’t be a baby, we all get headaches.” It has taken me almost 19 long years to admit it (I am almost 19), but I am disabled. If this is the label that will make these people understand that I can not live like them though I may try, if this is the name tag I must wear to get recognition that ever since before I can remember I have measured the passing of days not in time or experiences but in how bad my head is hurting. I remember being maybe 5 or 7 and saying to somebody, “It’s not ‘do you have a headache?’ The question is how bad is the headache. Today it’s a 4. It’s a good day”. I have dealt with pain at a 10 at certain horrible times when I was still young enough not to know how to spell my own name. I got through the bad days by promising myself that if I could handle one minute longer, I would let myself go and get the knife from the kitchen and cut all the pain out of my head. Then it would be one more minute, and one more minute, until I was finally able to sleep. One day I realized how many years I had managed to survive living with this, and my mantra became: I am strong. I have fought these demons before and lived. I know this monster under the bed. It is not scary, it is not something to hide from. I have made it this far and I will keep going because the fact that I am alive is proof that I can still exist with this illness. Presently it seems absurd for my struggles to be trivialized. How dare some far-off stranger with no experience of a chronic condition tell me what I go through every day is not real, not valid. I’m on shaky grounds right now as I try to find a way to live away from my caretakers and dealing with the dragging depression, the spiking anxiety, and the pulsating migraines while juggling my responsibilities. I can no longer lock myself away in my room when the migraines wrack my skull, because unfortunately the IBS that I have ended up in me losing about 30 pounds that I couldn’t afford to lose. I’ve always had problems gaining weight, and now I’ve been put at the point where I have to be monitored to make sure that I eat enough each day to regain the weight I lost. I can’t even drive myself anywhere, or get a job. But ever since I became fed-up with how my life is progressing, I’ve been looking at other treatments that are not medicine. In particular, I’ve been researching service dogs, and it’s a possibility that has given me enough drive to try to haul myself out of this train wreck I’m in. I know that once I get back on my feet though, I’m not going to pretend like my condition doesn’t exist for the comfort of others. I’m going to try to help other people like me, who might be having a difficult time realizing that disabled doesn’t mean lesser. It just means life is more… interesting than those that would force this label on us.