Cognitive Clouds, Cobra and Bankruptcy

To try to explain how bad the cognitive fog can get when you are in so much pain that it's like a dentist's drill is going at your head the entire time you are awake or asleep, and you just want somebody to cut off your head to make it stop.

 I was formally fired in 1992. I ran a unit as the technical lead working with mainframe and PC email systems that interconnected statewide over our wide area network and was heading the project to upgrade the system again. So I was VERY familiar with email. It was my preferred method of communication. Yet 6 years later when my old college roommate wanted to get ahold of me, I couldn't remember how to send an email or get into the programs.

I've studied calculus and differential equations but when my children were learning the times tables and factoring I couldn't remember the 7 or 8 times tables because they were, "filed," in a different area in my brain then the other times tables I learned as a child.

Pregnancy and its hormone overload in my body had placed me into a new headache type and placed me in chronic prodome state. What used to be called fugue state. A state in which I can be triggered by any of the triggers that would get me.

Nobody really explained to me why my cluster headaches were different and why I was almost insomnia's poster child with them, who constantly needed to keep my mind occupied to keep from obsessing on the severity of the PAIN.

Low light reading and playing stupid video games became my outlets when sleep was hard to come by. And I couldn't explain that my brain still worked at 900 miles an hour. It just couldn't be trusted to file things in memory correctly, and I didn't understand why the palliatives I'd learned for classic migraine didn't always help for the clusters I was now getting. It was exacerbated by my neurologist having to lighten and restructure her practice for health reasons for herself so that I was without a good anchor for dealing with this new type of headache. But before that happened we tried MANY things. I'm not sure she didn't see some of her future in me. since she was a professional and a migraneur as well. She was pregnant when she downsized her patient base so I've always hoped her migraines didn't get worse.

But she guided me through the initial steps of dealing with Chronic Daily Migraine. Which only needs to be 15 days a month. Go figure. I wish I only had headaches 15 days of the month...then maybe I could work, cause there are 12 weekend days in a month...hmmm.` Now 'chronic' migraines are sometimes diagnosed as 8 days or more a month for 6 months or more. At the point I was fired I was getting migraines 5 or 6 sometimes 7 days a week and had been for over a year. I had my husband and 2 tiny children to support. We had determined that by the time we paid for daycare, he would have been working for $1/hour and it than that to us to have family home with our children. But that made the assumption that I was okay to work.

We didn't expect pregnancy to trigger so many family illnesses so badly. Looking back, I'd have to say that it was massively exacerbated by the high stress nature of the way I approached my job, my life, hell, everything ... I believed in giving it my all and holding nothing back and so I had absolutely no reserves of strength or energy. I was getting classic migraines. I was getting clusters. I was getting icepicks. I was getting zigzags. I was getting sinus headaches and tension headaches and the dehydration from the spinal taps that were sometimes done. I could tell the difference on the rebounds.

I'd been raised in a family that firmly believed in the Calvinist work ethic and believed that working hard was the way to get ahead and that was what was important for your family. It wasn't important if you were happy, or if you were necessarily around your family though you were supposed to be a good parent in there somewhere. But it was imperative that you supply all material needs to your family so they were free from want and had a roof over their heads. I'm at the very youngest of what can be seen as the Baby Boomer Generation. Though most of my friends are Generation X'ers. My parents lived through the Depression and the World Wars and some of their attitudes about financial stability and not starving  were passed down. I still keep a stockpile of canned goods that some Gen Xer's just don't understand. 

I was lucky that I had taken out disability insurance because it kept us semi-solvent for the waiting year until disability kicked in. I was pretty much bed ridden as they tried various preventatives one after the other and we kept finding new ones that didn't work, or that my body became too conditioned too to work. In that time period the only insurance I could get was a continuation of my coverage under Cobra at almost $900/month and my prescriptions were running close to $1000/month. I had to stop getting the acupuncture treatments that actually helped the migraines and the weekly massages that actually helped the fibromyalgia. And my therapist that my insurance insisted I see, as well as the PT. I couldn't afford them anymore.

My disability insurance was only for 2/3 of my salary and the disability insurance I'd taken on my mortgage was 1 month short of kicking in. My retirement was about 3 months short. So I ended up with us ending up prescriptioned and insuranced right into homelessness and bankruptcy. Chase Manhattan was nice enough to foreclose on the house as part of the bankruptcy proceedings, We had no one who could take us in.

We were very lucky my parents agreed to help us by buying an RV we could stay in on their property while storing our stuff in their family room and den and we rented two storage units. Not that my mom let us sleep in the RV all that often. She didn't consider it warm enough for her grandchildren. I was very happy we were inside later on. my dad had a heart attack and my husband and niece were there to give CPR. It gave people time to say goodbye.

I was amazed we actually got a place to rent to us after the foreclosure and bankruptcy, but they did. So about 6 months after my dad passed, I and my family moved to be closer to my husband's job. Yes, he now was working, having decided that even though I was not at 100%, we couldn't make it on my disability alone with 2 children and the cost of my insurance and the cost of my meds. plus we had no coverage for him or the children.

I was still silly enough to be trying to be in charge of our monthly bills as I always had been and balancing our checkbook and accounts...what a mistake! After the 4th time I made over a $700 error and needed to have my mother bail us out because I couldn't add and subtract through the cognitive fog and pain (Imagine that dental drill with no pain killers and being half asleep ALL the time, or at least feeling that way, with your mind NEVER clear.) I passed the bills to my husband...that was an even BIGGER mistake. LOL He believes in paying bills as he sees fit, when HE wants to .... as he says, They'll still be there NEXT month. Aargh!

The Patter of little Feet

Thank the gods I waited until after 30 to get married and have kids! By that time my parents were positive I was gay. I was sorry to disappoint them, and while I love the female form, I can't confess to any more than bi tendencies. (tongue very firmly in cheek...not saying whose cheek or where). But, anyway! As I was saying, I wanted to get married. Where WAS my mind? Hindsight is 20/20. The proverbial straw was woven and piled onto the camel's back here and now.

But I wouldn't trade my kids for the world. I was a muscular 185 pounds of toned female body and belly danced for 5 class hours a week. I downhill skied, went out clubbing, camped and held down a challenging career as a Senior Systems Project Manager. I had graduated from university and loved my job. I used to track, plan and run multi-million dollar computer projects for my employers the Oregon Department of Revenue and then the Oregon Department of Transportation while helping to oversee a units that did first appraisal support and then mainframe and LAN based email system support. My job was anything but a standard forty hour work week. There was always extra training and comp time, implementation, testing and installs. It was exciting and cutting edge, sometimes bleeding edge.

Then I and my husband decided to have our children; and my whole world stopped over the course of two years. First with the pregnancy with my son my migraines became weekly or every other day. Then 6 months after his birth the mini pill gifted us with my daughter. That's when the migraines went to daily, and we added cluster headaches to the mix.

Cluster headaches were a whole new ball of wax. Somebody shoot me. They are an icepick drilled straight through your eye back into the front quadrant of your brain and while this is happening your eye weeps and your nose runs and the rest of your head pounds in sympathy. You don't want to sleep. You want to pace, or bang your head on a wall, or pull out your hair or anything that will stop the drilling but it lasts for HOURS. And then when the unending waves and spikes of the drilling of it let up...it may leave you hollowed out with a classic migraine going for days or already started, or it may start again itself in a BRAND NEW CYCLE.

I've now had over 23 years to get used to this. It's my new "normal." The only changes in this over the years have been in it getting worse. Once upon a time the doctors held out hope that the hormones released in menopause, or the abatement of some of them, might set the clock back and help get this under control.

I'm not feeling it from my end.

But during this time I did have a good experience with acupuncture. I heartily recommend it to anyone. It worked wonderfully to give me pain relief for the only hours I actually had relief during this time period. No pain...as long as the needles were in my head. Enter "Marvin the Martian." Couldn't exactly rock this look at work, or with a toddler and an infant at home. But boy, was it tempting. Work appropriate attire it was not. And figuring out how to sleep with them and incorporate them into a hairdo? So not happening! That chopsticks thing in the front of the scalp just doesn't work. LOL But I've heard the military uses a variation on this when soldiers need to go on a mission with a migraine and they put a fine, gold staple in. I wish I could find someone who knows about that and if civilians could get it done. I'd volunteer as a guinea pig even!

For me I could only work through this for about a year after my daughter was born and then my neurologist refused to sign a medical release for me to return to work after one of my many absences for migraine attacks during this time. She got me fired. I went bankrupt and lost my house and had trouble feeding my family since I was their sole support. She also got me put on disability and probably saved my life and my family and my family's future.

I wish I could find her to thank her today because she most assuredly saved me from being fired for incompetence if I had been released to go back to work. Over the next years I went from someone who could run and keep track of multi-million dollar projects and timelines to someone who couldn't balance a checkbook and add and subtract without making multiple errors.

The dyslexia I used to be able to power through with my memory is now something that hits hard when I'm dealing with numbers and trying to remember things I read or conversations I had when I was in pain, or wasn't sleeping well. Many people call this fibro-fog or drug fog or some version of cognitive impairment that hits for chronic pain patients.

For me, it was my worst nightmare. I would have rather been blind, or deaf, or even without my voice. I have always been an intelligent person who has relied on the power of my mind, and the deepest fear I faced was losing the ability to form sentences or communicate or not being able to rely on my memory. Suddenly I was the family joke. Mommy's. "Swiss cheese brain." People complete my sentences and play guessing games to find the word I'm looking for even with my extensive vocabulary. I'm told I have conversations constantly that I can't remember. And others that I remember clearly I'm told never happened. I have to keep a multitude of notes to keep any semblance of order in my life, or mind.

 I had a psychologist in a pain clinic tell me when I was on opioids that I still seemed very intelligent to him. ? Really? Seriously? I so wanted to answer him back and say, "What, you have an IQ of 80 and graduated with C's so someone who can speak in complete sentences seems intelligent?"

He didn't know that it took me hours to get myself dressed and ready to be around people and that the few hours at the hospital would suck out all the, "good" time that I would have for that day, and the next and most likely the whole week.

He couldn't comprehend that someone who could speak to him clearly and communicate could feel that they had  lost half of THEIR intellectual capacity! It was an idiotic statement. I don't think he realized that to work in my former career I had to constantly attend training and had to keep my education current and was constantly learning about other people's jobs and how they were done so that we could work together to streamline them. My number of years of education is probably the equivalency of a Masters by now with computer certificates and languages and seminars. But on top of that I research all the health conditions that impact me, because no doctor is going to do it as thoroughly as I will and it allows me to answer the important questions about my health before more goes wrong.

I wouldn't normally pick on C students because I was one in college at Oregon State University...LOL...even with my well above average IQ. If you are bored out of your mind. Don't really want to do what you are doing. And don't really know what you want to do. And becoming disabled on top of it and drinking a beer or two to cut pain while you study every night so you don't have to take the opioids and can sleep? Gee, makes for some solid C's. Classes just don'[t seem that important, except to get through them so you can finish and do something, "real."

I went and did something real. I got some jobs in the real world. Started a career. Found a man I loved who was my best friend and we had some babies. It doesn't get more real than that.