Well, my one-day migraine from Wednesday turned into a four-day migraine that I finally had to go to the emergency room to get rid of this morning. They pumped me full of a bunch of drugs that did take the worst of it away, although I must admit I’m scared it will come back once those wear off. They did give me a steroid shot to help stop rebound migraines, so hopefully that will work.
I’m exhausted and somewhat depressed about the whole situation. I went at least a couple years with barely any migraines and then this just pops up out of nowhere. I can’t help but think part of it might be all the stress about my upcoming SSDI hearing. I try not to consciously think about it, but that doesn’t work so well for obsessive minds like mine.
I’m sure you guys understand that this will be a short post since I’m not feeling too great, but here is a picture of an extremely ugly, grumpy stuffed lion for you to enjoy:
This has undoubtedly been a rough week for me so far, but some good things have happened too. Here is a short run-down of the last few days:
Sunday and Monday, one of our pipes froze because of the freakishly cold weather so we had no water until that section thawed out. Luckily, it didn’t cause the pipes to burst or anything like that. My husband thinks he solved the issue by replacing the insulation around the pipe, but I guess we’ll find out the next time we all freeze.
Yesterday I had my appointment with the rheumatologist to get my Ehlers Danlos testing done. I’m officially a zebra! Right now my diagnosis is Hypermobile Ehlers Danlos, although I do plan to try to pursue genetic testing to make sure none of the other EDS genes are playing a part. The doctor also highly suspected I have POTS (postural orthostatic tachycardia syndrome), which would help explain my dizzy spells, vertigo, feeling faint, and maybe even a few episodes of passing out when I was younger. It sucks that there is no cure or really even further treatment other than what I’m already doing, but it is wonderful to have some answers that finally make sense!
Tuesday I made the mistake of posting in a Facebook chronic illness group about my surprise that a zoo we want to visit charges $25 for the use of a wheelchair for a couple hours. Soon I was accused of being entitled, expecting everyone else to pay for my disability, and even being too poor to go to the zoo if I couldn’t afford the extra charge. The attacks got to the point that it actually made me cry because it hurt my feelings so much. I wasn’t even saying that the zoo had no right to charge for use of their equipment, I was just questioning whether the price was a bit high for the time it would be used. Of course, then I heard that some zoos and theme parks charge way more, some even over $100 a day! I can’t help but feel personally that is taking advantage of the disabled. Maybe I’m wrong, but I still feel that way.
Last night all this stress took its toll on me. I had the worse migraine I have had in years. Luckily, I still had some migraine pills from the last time I filled the prescription which was several years ago. They were technically expired, but still did their job. Today I have that slight headachy, hung over feeling I always get after a severe migraine.
I made these 3 new mixed media ACEO collages for a new autistic music-themed art contest being sponsored by Mainly Mozart and The Art of Autism, who I have worked with many times in the past for various contests, promotions, and art projects. This particular art contest is called “Finding Your Inner MozArt”. Winners get a cash prize, as well as having their works displayed and put up for sale at Mainly Mozart’s month-long festival in San Diego, California. I hope I win, or at least place!
I’ve had a rough few days. I think the main problem is that I’ve been out of my anxiety meds for a while because Buspirone is on national back-order for some reason, and my pharmacy doesn’t know when/if they will get it back in. I contacted my psychiatrist today to ask him to prescribe something else, hopefully he will do so soon. I was going to try to just hang on until my appointment with him at the end of the month, but I am having some real anxiety issues cropping up without my meds.
For one thing, I’ve been having some body dysmorphia issues, which happens now and then. I’ve heard that issues like these are common among high-functioning autistic people. I’m not trans or anything like that. I don’t want to be a man. But, for some reason, ever since I hit puberty, I’ve always felt kind of uncomfortable in my own body. I’m not sure why. I don’t think I’m extremely ugly or anything like that, but it is like there is some kind of disconnect in my brain when I look in the mirror. I feel like my body looks wrong somehow or like it isn’t the body I should have. It is hard to explain.
I think part of it has to do with always feeling unfeminine. Like I said, I don’t want to be a man, but I’ve always felt like I’m not very good at being a woman either lol. I feel like a tomboy, I always have, yet sometimes when I look in the mirror I look more like a woman than I feel. It is weird. I also have always wished I was thinner, more flat-chested, and athletic-looking overall, but my genes just don’t cooperate with me. It is funny to me when I hear women saying they want bigger boobs. I’m always like “why would anyone want that?”, but I know everyone has their own insecurities, and some people obviously have different ones than I do.
I am currently a high-strung mess. As my SSDI hearing looms nearer and nearer, I find myself obsessing way too much over it and almost panicking about the fact that I feel powerless over what will happen in the end. I am trying to do absolutely everything I can think of to prepare for it and make sure we have good medical documentation especially, but that in itself is stressing me out because it means having to be assertive and ask for things from my physicians which I despise having to do. I HATE having to ask ANYONE for ANYTHING. It is just the way I am, but sometimes you have to do the things you hate…
I do not do well when I feel like I am not in control of a situation. My anxiety can’t handle the uncertainty and the endless waiting. I would almost rather deal with the worst case scenario immediately rather than be in limbo for months waiting for someone else to decide my fate. On top of that, I feel like I am annoying those around me (lawyer office employees, doctors, my poor husband) because of my intense anxiety state. I talked to a paralegal today and she told me to take a deep breath and relax lol. If only I could! I can do the deep breath, but the relaxing part just ain’t kicking in.
The heightened stress is taking a physical toll too, as it always does. My upper back/shoulder/neck area is flaring again to the point that I am regularly rolling on Lidocaine and had to take some Tramadol. The pain is so bad I can’t do any household tasks, which makes me feel bad too. Even typing this is painful and requires frequent breaks.
Now I feel like my whining is probably annoying all of you too lol. Sorry if that is the case, but I just needed to vent!
I am feeling so incredibly stressed about my upcoming SSDI hearing and everything related to it. It has become an obsessive thought pattern that I can’t get out of. This always happens when something I am super nervous or scared about is looming on the horizon. My mind is a circular track of “what ifs”, incessant thoughts about things I need to do, fears that I will make a mistake and blow my last chance for SSDI benefits, and fear that if I fail and am denied again, it will once again send me into a suicidal spiral of feeling worthless, disbelieved, and like I will forever be a burden to society and those I love.
Tomorrow I have to ask my psychologist to fill out a RFC (Residual Functional Capacity) form for the hearing. I think she will be open to it and want to help, but I am still anxious about asking and scared of rejection. I have to ask my primary care physician to fill out a similar form when I see her next week, and am even more nervous about that because I know she is often rushed and I don’t want to be an inconvenience or annoy anyone by making demands.
As you can see, I struggle greatly with asking anyone to do anything for me. I’m not sure if it is just my lousy self-esteem or what, but I always feel like anything I need is an imposition on someone else. Maybe the result of being raised by a narcissistic parent? Growing up, I often was made to feel like anything I needed (emotionally or physically) was selfish and inconvenient to those around me. To this day, I struggle with feeling like I am actually entitled to anything – even basic human respect.
I think my fear of being disbelieved about my disabilities also stems from the fact that when I first started getting really sick, even my own husband and family didn’t believe me. My husband came around first, when he saw how much I truly was suffering every day and how even the things I loved most were being ripped away from me. He has even apologized for his initial doubts. Some of my family (including in-laws) still make me feel invalidated, but I’ve come to the conclusion I can’t do much about that.
Today has been a rough day 😦 I had to get up early to go to an appointment with my lawyer to talk about my upcoming SSDI hearing in February. I woke up feeling exhausted, achy, and sick to begin with, my stomach and digestive system freaking out from the anxiety of the change in routine as they always do.
The meeting went ok, I suppose. The lawyer seems really nice and genuine, but the whole thing depressed me. For one thing, it isn’t easy to have everything that is wrong with you physically and mentally just laid out on the table for everyone to see. It isn’t fun facing the reality of my own limitations and self-perceived flaws. I know I can’t help having mental and physical issues, but it SUCKS to have to dwell on them and think about them more than I already do normally.
The lawyer wants me to try to get my doctors to fill out some forms to take to the hearing and that gives me high anxiety. I hate having to ask anyone to do anything, it is just the way I am. I have a deep fear of rejection. What if they say “no” when I ask them to fill out the forms? Then I will feel even lower than I already do. I know my doctors are caring people who try to help me and they will probably be more than willing to help, but my brain just can’t shut off the “what ifs”.
I came home from the lawyer visit, cried for a little bit, then crashed for a few hours in bed. I still feel like absolute crud, but am trying to get back into my normal routine. I am desperately in need of some self-love and comfort right now, but that isn’t easy for me to do.
I found out recently that my Social Security Disability (SSDI) hearing has been set for February 2019. When I found this out, I contacted my attorney’s office to ask for a copy of my medical records since I honestly don’t even know what all is in them other than what my doctors have told me and what little is available on the online portals. I was rather shocked when they told me that they could give me the physical health records, but it is a HIPAA violation to allow me to see my complete mental health records.
To be honest, this bothered me. I’m not allowed to see some of my own mental health records? This doesn’t seem right to me. Maybe I could understand if I were violent or a real danger to others and they feared me getting pissed at what the doctors wrote and trying to harm them or something, but the closest I’ve ever come to violence is just having a meltdown and yelling at someone because I was overwhelmed (normally this has only happened at work places when I was put under a lot of pressure). Even yelling is pretty rare for me though. I am much more likely to just burst into tears, lock myself in the bathroom, or try to get away from the situation by finding another “safe” area where I can be alone.
Am I alone in being frustrated by the seemingly patronizing system hiding my own truth from me? Who else deserves to know my doctors’ real, honest perception of me more than myself? I’m not a child. I can handle knowing what my doctors really think of me and maybe knowing those things would help me in my own personal growth.
Yesterday I had rather a bit of a breakthrough moment. Now, to most people with healthy backgrounds and relationships, this will likely be a bit of a “duh” moment, but to people like me who were groomed to be codependent caretakers, it is an immensely important realization.
My “eureka moment” can be summed up in one sentence:
I don’t owe anyone ANYTHING, and no one owes me ANYTHING.
Of course, this does not mean that I can’t give to others out of the goodness of my heart, or that they can do the same, but none of us should feel required to do so. I would say the one exception to this rule would probably be children. If you bring children into this world, you do owe them something – and that is to do your best at providing them a safe, stable, and loving childhood. I guess pets fit that category as well. If you sign up to take care of something that can’t care for itself, you are essentially accepting that responsibility.
Outside of that, I’m not sure if any of us should feel like we have to fully take care of others emotionally, mentally, physically, or materially. We all have a responsibility to do our best to meet our own needs, and while that may mean reaching out for help now and then, we have to realize that sometimes we may be turned down and that is ok. If so, we just need to keep looking I suppose.
As someone with disabilities though, I do want to say that I do feel it is vitally important to have public programs and assistance available (whether these be government or charity systems) for those of us who sometimes struggle more than others at being “functioning adults”. To me, it is just a simple matter of society welfare and empathy that should strive to help anyone who falls through the cracks.
Last night I was thinking about my history of abuse and how I grew up seeing so much of it. As far as physical abuse goes, I did endure some growing up, but it was much more common for me to see someone else physically abused in my family. There was a “scapegoat” in our family who seemed to be the target of much of the worst of the abuse.
Thinking back, I remember how when this abuse would happen, I would scuttle into the corner or hide in a nearby alcove, but I never tried to actually leave the room. Common sense would seem to dictate that when violence is happening, you would want to get as far away from it as you can, but I didn’t even try.
I questioned myself last night why this was so. I came up with several possibilities. First, perhaps I was afraid to leave the room because I thought it would draw further attention to me. My main goal when violence would erupt was to try to become invisible. Sometimes the rage would boil over and the physical and verbal abuse would extend to me if I happened to get caught in the crossfire, so I naturally tried to fade into the shadows. Sometimes, early on, I would try to distract and please the abuser in hopes of calming them down, but that never really worked.
Another reason I think I stayed to watch was because deep down I feared for the safety of the scapegoat and I wanted to make sure they didn’t die. There may have been some morbid curiosity tossed in there too, the way that human nature makes us crane our necks to see what happened when driving by a car crash.
Lastly, I think I stayed and risked my own safety because I felt responsible for trying to make peace after the explosion. I hated to see the division in my family and the anger and pain created by these confrontations. After the worst of it was over, I would often go to the victim and try to comfort them, and then I would even go to the abuser and try to comfort them. I would try to mend the rift between them, although obviously looking back with adult eyes, I see the utter futility of my efforts and sometimes feel anger that I felt responsible to hold the family together in the first place, as I was so little at the time (elementary school age).