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!

I Lied to my Doctors all the Time.

It's 2016, I'm a 54 year old female divorcee who was raised WASP in a Baby Boom Generation Family as the baby. For those who don't get it. WASP is White. Anglo. Saxon. Protestant extraction, meaning I'm essentially white bread North American and my parents belonged to one of the churches that wasn't Catholic. No Latino, or Basque or Italian or interesting like that. Pretty much limits it to England, Wales, Ireland, Scotland, Germany, the Netherlands, Iceland, Sweden, Norway and Russia, etc...but there are people who would argue even that as there are Jewish families and Danes as well as the Scotts-Irish back in the tree, but suffice to say, I was raised a pretty traditional Baby Boomer.
     Parents who grew up during the Depression of the 1930's and WWII and had their stories to tell of family members who didn't come back. A dad who went to military school in Portland, Oregon (Hill Military Academy for those who wondered.) and never had a reunion, or wanted one because he knew that most of his classmates would be dead. A mom who was the youngest child of 6. Her parents born before the turn of the last century. My grandfather was an officer and a gentleman and came up the hard way. From the ranks. After going to fight Pancho Villa on the border at 16 when he lied about his age. Not because of glory. Just because he was a man grown and part of the Guard unit that was called up. His family had 8 mouths to feed.
     I was the first birth control baby of my generation in our family I'm pretty sure. The doctor's didn't much know what they were doing then. Mom was knocked out for every labor and had a beautiful baby and scars when she woke up.
      Mom smoked. Everybody smoked but Dad. And she took a huge amount of hormone in the pill, but I guess I showed up anyway. I was an Rh+ baby born in 3rd position to an Rh- Mom. I was the one her body tried to kill. Nature and genetics have kinda been making me wish she's succeeded ever since. :')
    For those that don't understand that generation, I've tried to lay the groundwork. Try to understand. These are not lay all your cards out on the table people. These are polite people. My grandmother almost died of cervical cancer because she hadn't had a pelvic in 40 years. My mother had an IUD grow to her uterine wall because it stayed in over 16, and no doctor ever told her it wasn't supposed to. They are far from ignorant or stupid either. My great grandmother was a doctor and owned a pharmacy, though Washington State would recognize her as no more than a midwife, being female.
     But let me tell you about women from my generation...we were taught to be people pleasers, to cow-tow, to wait on company, to not make waves, to be accommodating. In some instances to the detriment of our own health and safety. I've come to see that having such truly wonderful manners is sometimes the wrong thing for your health because you are raised as that ideal 1950's type woman, and you are taught to always, always, always put yourself last. And I have discovered that my biology placed first my lover/husband and then my children above myself in my need to make them happy hierarchy; my parents were already there, as well as certain close friends. So on to the doctors.
     I don't think I am that unusual in lying to them. And even on House, they treat it as common. But I don't think they get to the root of why women from certain cultures, or certain generations would lie, or really tell little half-truths. We are conciliators, Geishas and Courtesans taught the art of compromise and soothing from at least middle school on up. From the time young men become stronger than young women we are taught to sooth their tempers so that they stay rational when angry and to help them quell the adrenaline response which spikes so quickly while ours spikes so slowly. It takes our adrenaline 3 times longer to spike than a man's, but then it lasts much longer. But we also know in that rational brain we seem to sometimes develop sooner that we are much less strong, though we can endure more.
     So I came to realize year after year as I was getting worse and the doctors would ask, " How did that treatment work I gave you 6 weeks ago?"
     "It worked a bit." or some such prevarication would always be my answer as I tried so hard not to disappoint my (usually male) doctor and instead sabotaged my own health.
    "Good. Good. Let's keep that up for the next 3 months then, and come see me in six months for your next check up."
      And there goes your chance to say, "No Doctor, It didn't work at all." or "In fact, it made things worse."
     This took years to dawn on me. I don't think I'm really that stupid. I just think that we are really that trained to respect doctor's authority and when they tell us something should work, we feel guilty if our body doesn't work that way. At least that's the way I reacted. And it didn't help when I ran into people who told me it was all in my head. Or that I was crazy. Or that I should just be able to wish it all away or use the power of positive thinking.
     Nowadays my answers to those people would be a great deal ruder, and more like. "Look here, Cupcake. Until you've spent 3 months with a jackhammer pounding on one side of your head through your ear and an icepick nailed through your other eye twisting into your sinuses with no drugs and no relief in sight you don't have an opinion on my pain. You can sympathize, you can empathize, you can pray for me all you want. But smart remarks, cracks, or getting between me and any relief I can find and we will NOT be happy coexisters on this planet."
      I also carry a fold out cane nowadays. It makes a cool sound when it snaps into place. Maybe I'll be one of those Granny's who flails around with her cane....  nah, the thought of jail is just too tempting. 3 meals. No real worries. The doctors come to you. hmmm. But they are probably MUCH tougher than I am in there. Sitting and reading all day is probably not an option. And my daughter really wouldn't like grandma jailbait. LOL 
     For those who aren't already familiar with headache types and information about migraine, there is a wealth of information .American Headache Society Articles. I'll also be posting links of interest in the future.