Obstacle course

I know I have sort of dropped off the face of the earth for the past week or so; I have been busy procuring and organizing my medical records and gathering more detailed medical history from my family for the forms I have to fill out for the genetics center. 

It’s been a frustrating and exhausting process. There are so many blatant mistakes in the records, and something that was flat-out omitted that could have been really helpful.

This process also required calling my mom to get more info, which was very draining.

Don’t get me wrong, I have a good relationship with my mother and yeah, I really should be calling her more often. But she is so loud and she gets so angry, it is very hard for me to cope with. Not angry at me, just angry. She talks louder and louder until she’s pretty much yelling, and I just want to curl in a ball with my hands over my ears. It’s nearly impossible to get a word in edgewise, and it just feels like all of my energy is being drained out of me through the phone. 

I’ve learned to avoid topics like politics and healthcare, not because we don’t mostly agree but because it gets her worked up. Unfortunately, healthcare was exactly what I had to discuss with her this time around. 

I can’t blame her for being bitter. The medical establishment failed her every step of the way for her entire life. She’s been misdiagnosed, prescribed addictive drugs that she had to wean off on her own, she’s almost died because of a missed diagnosis and had her endometriosis made a million times worse by one doctor’s quack experimental treatments. And when she kept complaining of the same issues over and over, they eventually had her declared mentally ill, which ended any chance she had ever to be taken seriously regarding her long history of bizarre symptoms.

Imagine my horror these past few years when I found myself going down the same path, as far as the strange symptoms and getting bounced from doctor to doctor. I have been offered antidepressants from two primary care providers, a sleep specialist, and a neurologist. You know who didn’t suggest antidepressants? A psychiatrist – the only type of doctor I’ve seen so far who has any business diagnosing and treating depression. So I get it, I really do. She has a right to be angry, but it’s hard for me to have her vent all that simmering frustration and disillusionment on me, and for her tell me that I am wasting my time trying to find a diagnosis.

I thought maybe it might give her some peace of mind to know that there is something that explains all of the symptoms and the way it’s been passing from generation to generation in our family, but it just upset her more. 

We did manage to get a lot of the family stuff documented, though, and I sent in the completed form package to the genetics center this morning. Now I wait, to see if they will deem it significant enough to schedule me for an appointment. It’s a relief to have that part done, though I am still wading through gathering all my records together.

Because I am an Aspie, I lost literally an entire day to the actual forms themselves – not filling them out, just fighting with them. They looked like copies of copies that were scanned crooked. I was smart enough to make a copy of my own before I started filling them out, because my writing is so terrible I knew there was a good chance I’d screw one or more pages up too badly to use. 

I even went to the store to get a fine-tip, smooth writing pen so that I could write small and neat, but it was a lost cause. I am left handed, uncoordinated, and I have a quirk where my brain gets ahead of what I am writing so I end up writing half of one word and half of the next word together and have to scratch it out and do it over. I don’t know what kind of disability that is, but being able to do things on a computer (where you can just backspace over your mistakes) was the best thing that ever happened to my writing, and I thought “this would be so much easier and tidier if I could type it.” That gave me an idea…  

I actually had software that would make a form fillable, but I hadn’t ever installed it on my new computer and I had to ransack the house to find the install disk. Then it didn’t install on Windows 10 properly because it was designed for Windows 7. I researched a fix for about an hour or so, couldn’t fix it, and gave up. Well, not really, I just tried to come up with another approach.  

I realized I could install just the component that makes forms editable rather than the whole suite, and that worked… but the crooked forms made it problematic and the form filler program did not have a ‘deskew’ tool. 

So I fired up my old computer, which had an old version of Adobe Acrobat, scanned the forms, deskewed them, and re-saved. That version of Acrobat didn’t have a form fill wizard so I took the saved file back to the other program. 

I finally ended up with something where I could fill out most of the fields by typing, which made things much more legible. The last page’s fields would not recognize, though, so I saved the mostly filled out form, brought it to work, and loaded it in a much newer version of Acrobat which let me make those fields fillable. 

I am certain that I could have filled out those forms ten times over by hand in the time this all took, but this was a classic example of me being me: the more obstacles that were thrown in my path, the more I doubled down on trying to make it work – and I did make it work… eventually. I have fallen down rabbit holes like that before and literally forgotten to eat all day. 😀

Featured Image: A mid-sized DeKay’s brown snake (Storeria dekayi) on my hand. The snake was found indoors at a county facility and was most likely exposed to a pesticide or cleaning product. It showed signs of nervous system damage and didn’t make it, sadly. No image filters. 

3 thoughts on “Obstacle course

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  1. Oh my dear 💞💞💞. Yes, I’ve been where you are. It’s frustrating and overwhelming! I finally made it my mission to spend my life helping people in exactly this situation: mysterious symptoms, medical establishment of no help 💜. My job is never boring! 😉. Because I know that feeling firsthand. I got jaded, to the point where I stopped seeking help because there was none. After I got my Dr license I started running tests on myself and researching the results in various textbooks that were more current than the ones used in the schools. Oh wow, did a whole new world open up! But it had taken so much to open that door. And the tears of desperation shed along the way were countless 😳. I hope you get the answers you need, and please know that I’m here for you, both as a friend and as a pro-Bono second opinion 😉😘❤️❤️

    Liked by 1 person

    1. Aw, thank you. 💜 I am pretty sure I’m on the right track with the EDS suspicion. It fits so many seemingly disparate pieces into a cohesive whole. I don’t know if I’ll get the actual diagnosis, because a lot of my joints are stiff now, my hamstrings are so tight I can’t even reach much past my knees, let alone touch the floor, and I am flexible in joints they don’t assess, but I still think it’s worth pursuing for piece of mind, for the rest of the family, and honestly, as an ‘I told you so’ for my other doctors (does that make me petty?) I’m now looking more into ‘what can I do to mitigate this’ for myself. Exercise, diet etc…

      Liked by 1 person

  2. I will be watching your diagnosis story closely. If you get diagnosed, I might feel safer bringing up the same symptoms. This “spraining everything” thing in the past couple of weeks has, I guess, gotten bad enough to feel I SHOULD be telling someone. I’m just afraid they’ll laugh and go back to “benign joint hypermobility is benign” and upset me. If you’re taken seriously, that might give me more confidence. I also just get horrible pain in my hands trying to write by hand. Couple that with ADHD inattentiveness, and I can’t fill out forms either. I scan and convert to fillable PDF whenever possible, or just take screenshots of typing and insert them as pics on the line.

    Liked by 2 people

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