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Just Hanging Out With My Head in My Hands

Sometimes life isn’t fair. Not that I am bothered by that. I find some sort of sweetness in it actually. The sweetness took me years to find at a toll that was way to costly. I started having signs of panic disorder when I was a very tout person. In grade school I thought everyone had bodies that hurt all the time. I learner to chew asprins because I couldn’t quite swallow them in first grade. As I grew I needed glasses. I had headaches even with glasses.

By the time I got to college I was falling apart. After twenty-five years of trying to find out what was wrong with me the pieces started falling onto place. Basilar arterial migraines with aura’s and pain and long periods of being in fuge state (which for me is like a complex partial seizure) made sense. Now I needed to find out about my body and my depressionand panic.

Fifteen years, thousands of dollars, and buckets of tears later I was diagnosed with fibromyalgia, chronic fatigue syndrome, and Sjogrens disorder. Soon after I was diagnosed with major depression, panic disorder, and agoraphobia.

Currently I am disabled and on disability. I can’t drive because the tube state /seizures happen without warning now. I have migraines fifteen of thirty days per month.

The one lesson I am learning in all of this is that I have to allow others to help me. My career was as a non profit exec. And I am used to fighting and scratching to make sure others are taken care of. My husband is my lifeline. He is One I could replicate for womanhood of my Fibro friends.

Many days, it is allies can do – to hold my head in my hands – and this may sound silly but I am grateful for those days. They make the non headache days so sweet.

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Comments

  • Ellen Schnakenberg
    6 years ago

    I am curious about your *seizures*. Was an EEG done and did they see the abnormal activity, or did they give you the diagnosis without those findings? I ask because sometimes (more frequently we’re finding out, than we used to think) this kind of activity can actually be a reaction to certain medicines given for Migraine. They most often aren’t seizures at all if you don’t lose consciousness. You talk of a fugue state, so it is most likely that this is the correct diagnosis, but for others reading your story, this is important information.

    Thank you so much for sharing this with us and giving us a chance to engage about these issues 🙂

    ~Ellen

  • coldhardknitter author
    6 years ago

    First off…apologies for all the weird words and out pf context stuff. I can no longer use a regular computer and use a Kindle for everything. I write something and Kindle writes something else. We have a strange relationship.

    Mmelle…I would find a neuro-opthomologist. A neurologists who is also an opthomologist. They can be hard to find depending on what part of the country you live in but well worth the hunt. If you didn’t have visual field testing done something might have been missed. If there is no one near you do an Internet search. I do know a neuron -opthomologist figured out a key part of my problem really early on and saved me a couple of years of heartache. What a generalist neurologists thought was an anyurism was scar tissue on my optic nerve. Instead of being put on blood thinner I was told it was something I had since before birth most likely. Ended up the doctor was a real jerk but at least he gave me the rout information.

    Thanks for your encouragement Nancy! I am grateful for so much in my life. Today I am feeling okay and think I may be able to go out with my family for a bit if I can keep my panic under control. My husband is a chef and is part of opening a new restaurant and tonight is family night. My parents are awesome and they will take me. I am working toward the thrive. Tonight riding in a car and eating out – big things for me – Tomorrow the yarn store!

  • Nancy Harris Bonk moderator
    6 years ago

    Thanks for sharing your story with us. I can empathize with your life today…it’s not easy.

    While growing up I’m pretty sure many of us didn’t give one thought about getting sick, or worse getting a chronic illness. Then we grow up and live each day to the fullest, and suddenly BAM – hello chronic illness!

    Life goes on, and it may be how we look at each day to see how we can get through it, survive it, more forward and thrive.

  • Mmelle
    6 years ago

    I have had headaches since childhood. Nobody seemed to believe that they were real,despite the fact that my maternal grandmother and aunt suffered with migraines. I didn’t get medical care or even checked out. Instead, I was told to “buck up, stand on my own two feet and stop whining about it. It was generally assumed at that time that I was trying to get out of having to help at home. In college, I fell off a horse and suffered a concussion. I was given pain medication for two weeks then told that I had tension headaches and to go home and relax in the bath. Later I was told I had panic disorder with headaches then a hysterical illness.
    Finally someone thought I had a problem with my occipital nerve and while I was being treated for that, a pain management Md sent me to a neurologist who says I have both. Sometimes I have an occipital headache and others, I have migraines. All I know is that I hurt and oftenFeel that I wOuld be willing to do anything to just stop hurting. I take a,mussel relaxer, and a beta blocker every day and pain medicine on days when it is needed, which is just about every day. I am worried about addiction. My stomach and body do not tolerate normal meds like Motrin or Advil. I have other migraine symptoms also. I find bright light to be intolerable and a sudden noise will make me hit the ceiling. I too, love the days when I am able to be pain free or even to just have less pain. Thanks for reading this if you did.

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