We Interrupt your Regularly Scheduled Shit Show for Some Really Crappy Special

Some days are easier than others and, boy, today was a doozy. The day before was too. Sometimes it just feels as if the rough days keep piling up, back to back. Monday was full of annoyances, some little, others more significant. One of the more challenging aspects was that I found out just how much my doctors and VA clinic here in town think I matter to the world.

See, they sat on repeated requests from the cardiologist for more information and notes to why I needed an echocardiogram. Since the requests were ignored, the referral for services that were started by my geneticist were rescinded, but the insurance company failed to inform the cardiologist or myself that the appointment was not going to be covered. That also means that the echocardiogram that I was to have this week will not be happening. I was also lied to and gaslighted by the VA nurse who called me to let me know that both sides of my body didn’t need to be tested during the nerve conduction test I had done earlier this month. That whole appointment with the neurologist is for a different post, because, well, it was really bad. Not as bad as the dermatologist who told me dirty jokes while he and I were alone in the exam room, but close. Speaking of dermatologists, at least my new one showed genuine compassion, which totally catches me off guard after so many horrible experiences with doctors.


See, just a lot of frustrations from people who obviously hate their jobs or are unhappy in their lives and are determined to make the lives of others just as bad. I wish I could say that such experiences are rare, but after talking with others within the chronic illness and chronic pain communities, I am not alone in my experiences. But just because a significant percentage of patients share these experiences, it doesn’t make it right.


Today was a continuation of that nonsense. I just was unable to leave the annoyance from the previous day in the past. It followed me like our dog Troy, crying into the back of my knee. He’s a weird one. However, this time, I was the one doing the crying. It has been a few weeks since I received my second denial for disability. This last time, the judge said that I could be a cashier or marking clerk, in addition to doing my old job of direct care provider. For the first two options, I would have to lie on my resume due to my level of education (MS degree) and the last suggestion would not be safe for me or those in my care. Direct care is very hands on. Literally. I collapse a few times a week due to dizziness and if I pick up anything heavy, I risk a dislocation. The tendons in my hands are hypermobile too, which means that even when I pour a pitcher of tea, the tendons in the back of my hands slide all around and sometimes get lodged on the wrong side of a knuckle. Not to mention the brainfog and medications that state not to drive while taking them. But sure, put me in those situations. I think the government just wants me to give up and die. I gave them 12 years serving in the military, but now they would rather I not exist.



I managed to take a shower after being called basically lazy and stupid by a family member, so that was awesome. It takes a bit out of me to wash my hair, and since I couldn’t remember the last time I washed it, I figured it was about time. Once in the shower, I could not stop crying. Like, real ugly crying. I think I just finally got so fed up. My fiance will be adding another 20 hours of work to his schedule each week. It guts me since my health prevents me from doing much to contribute financially. I have my military disability, but that is not enough to even cover rent. Looks like another year or so for the appeal process for SSDI and I don’t see a miraculous cure for what ails me anywhere on the horizon. I feel like I cannot afford to be alive a lot of the time. It seems like society really is designed to ensure that anyone who needs disability assistance needs to jump through hoops, only to be told that you’re not disabled enough because you were able to jump through their hoops. Fucked if you do, fucked if you don’t.


Trying to get out of the mental funk is hard. After getting upset, I typically get an increase in the severity of my symptoms. Flares are also caused by long travels (when the VA sends me out of state to see a doctor), stress, and changes in weather. How do you carry out effective stress management skills when one of the main sources of stress is your health care team? The team that doesn’t care enough about you to provide the information the insurance requests to make sure that your heart doesn’t literally rupture. The team that makes notes in your medical chart that you are a difficult patient? The team that denies services that other doctors have deemed necessary? The team that includes mandatory tele-health appointments with a pain psychologist who doesn’t read patient charts ahead of time and if you don’t show up to the appointment, you’re threatened with them sending the police to my house. Yeah, that health care team.


I need to get out of my funk. My body hurts. My brain hurts. I just want to not exist sometimes. At least then I wouldn’t be in pain. All encompassing pain that you cannot ignore. Hands that are routinely 20 degrees cooler than they are supposed to be. A mind that likes to tell you that you would be better off never having existed.

When someone tells you that they are “fine,” know that they could have so much crap that they are holding in, in an odd attempt at making the other person feel better. It is a weird dance that we do, where our sock slides down into our shoe, while at the same time putting on a front that can be seen through by only a few people.

I don’t have the cure or even methods for getting better and I don’t pretend to either. Sometimes you just need to ugly cry, write, and watch some cheezy 80s Christmas commercials and smoke some bomb ass weed. Putting one foot in front of the other, working towards goals. That’s all I seem to know how to do...from collecting degrees to diagnoses, it’s forward motion, but it also works against me. It prevents me from being in the moment sometimes because I’m always thinking about the next thing I need to do. Add in brainfog and pain that literally is present from the time I get out of bed to the time that I am able to fall asleep, and well, it takes a toll on ya!

Tomorrow is another day, right? What are some tips that have helped to get you out of a spiraling funk?