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!

PTSD, Fibromyalgia, High Blood Pressure and Nearsighted....Oh, My! Immortal?

By the time I hit college I had the insomnia and stress under control enough that my migraines were spaced about every 3 months and I knew most of my triggers. The stomach problems I'd had as a young teenager had backed off, and I wasn't living on or guzzling Mylanta or other antacids anymore and the nervous bowel/spastic colon diagnosis seemed to have gone away.

But then I started disassociating and dreaming horrible things that I only sort of remembered and went for long walks and talked it out with a good friend of mine.

 I finally ended up calling my sister to confirm if the memories that were coming back to me were true memories, or just really weird nightmares. They were true. I'd been sexually abused when I was a kid. By a family member. Not my father.

But my parents hadn't known how to deal with it, and I had never gotten treatment so I had a whopping case of PTSD. It broke my first year of college. So did my mind. I ended up with a bad case of Mononucleosis on top of trying to deal with starting school and having had to lose 40 pounds to be thin enough for the military weight charts so I could keep my full ride scholarship. I wasn't in a very good place when I was realizing what had happened. I confronted my Mom about it and all she could say was, "I didn't realize it had gone so far. Don't tell your Dad. It will kill him."

Wow.
 I never did. It had been hard enough to confront my Mother about why I hadn't gotten any help or counseling. So many things in my psyche started to make sense to me now.

 I took some psychology classes and talked to some friends. I wasn't really comfortable talking to strangers about things, I worked things out in my own ways and in my own times. I knew what my coping strategies and behaviors were and what I used as hiding behaviors. And damaged people who didn't trust recognized other damaged people pretty easy. It made me much more empathetic than I would have been otherwise, but it's something that never totally disappears.

 But the feeling that it is somehow the victim's fault, or that the victim is dirty...THAT goes away and THAT disappears over the years.

But my college time also had me dealing with high blood pressure and becoming nearsighted. They both hit at about the same time when I managed to hit a parked car. (Yeah, that was fun!) So the assumption was made that my eyesight was messed up BECAUSE of the high blood pressure. Oops! Nope. Not the cause. I'd been doing so much close up reading that my eyes didn't want to focus out farther anymore, so it was time for glasses AND high blood pressure medicine. LOL 

I knew biofeedback at this point, but I didn't meditate daily and I only used biofeedback during a migraine so I had no way of really coping with stress. I also had no real clue that the letdown of stress was a BIG migraine trigger for me. Notice I said TRIGGER not CAUSE. Migraines are a central nervous system DISEASE they are not caused by the things that might trigger an attack. Doctors don't know what the actual cause is currently. Not enough research has been done on this disease.

A year or two later I was afflicted with more of the back pain I had dealt with in middle school and high school. I initially had a gymnastics accident in gym class where my spotter didn't catch me on dismount off the horse and I came down on my neck, chin, and upper chest with my feet and legs curled over my head. That accident led to additional back problems throughout high school and college.  I spent almost an entire year in traction between the hospital and home traction on the living room floor to try and get my back spasms to calm down. That's where the TENS pack came into play

.

But in college I added pain in my knees, ankles, wrists and elbows. My doctor was pretty sure I had rheumatoid arthritis. That possibility scared me to death. I knew a teenager who had been dealing with that. She was in constant agony...but that's what I was dealing with...so it seemed like it might be true.

This was back in the 1980's. I was maybe pretty lucky in that I was sent to a rheumatologist who had just been to a conference and read about fibromyalgia. He tested for RA, but he was positive I didn't have it. He diagnosed fibromyalgia and gave me a packet to read that was 1/4" thick. The upshot of the reading was basically...you're sick...you have a syndrome....we can diagnose it and do really nothing about it. LOL So gee, I was lucky enough to get a name for it and be diagnosed, but from that point on I was on my own with the pain. I was given Neurontin (gabapentin which is similar to lyrica) early in this process, and it did help me get things under control for a number of years. I came to discover that I was unusual (Gee, imagine that!) in that I would wake up feeling as good as I would feel all day and go steadily downhill from there. Whereas most people with fibro I guess feel better as they get to moving and exercising. (If you've never heard of "the spoon theory" check out this link!)

I was also prescribed physical therapy for ultrasound and heat wraps and they were to do movement studies on my body. I was told seriously that I had a wonderful range of motion, but that I made not one single move in the correct manner. LOL And then they never bothered to show me what the correct manner was! LOL THAT really irritated me! If I'm not doing it right, show me how to do it right!

But I was really busy trying to get through college and get on with life. I used all my old standby's: Ace wraps, creams, gels, asper crème, menthol, soaking salts, TENS, meditation, biofeedback, steam rooms, saunas, hot tubs. I even tried new stuff when I graduated and a friend of mine became a masseuse. She learned deep tissue massage and did rolfing. It would leave bruises for a day or two, but it would also clear out the muscle and tendon knots that seem to live around my joints and throughout my back and allowed me to take up belly dance as a hobby for the next 10 years. I managed to work up to where I was practicing 5 hours a week and dancing performances 2 or 3 times a month.

I had a great career as a Systems Network Project Manager in the computer industry and I loved it. I lead a small team of techs. My migraines were under control. My fibro was under control. I was diagnosed with Chronic Fatigue but I was kicking it because the Graves Disease my body threw itself into supercharged things. I was told I might have Gauillame Barr as well as the Eppstein Barr that had made my first year of college so intolerable and was getting me down with the fatigue. There were some sort of titers in my blood, but the infectious disease doctor didn't believe in it. So gee, I guess I wasn't sleeping all the hours that I wasn't at work then? Some doctors can be asinine.

 I was seeing the signs of carpal tunnel in both hands and thoracic outlet in my shoulders, but I was moving and happy and productive. After the Graves Disease triggered, my doctor used pills to burn my thyroid out because it was hard on my heart.

 I was an idiot and smoked and drank and partied, but I was young and immortal too. I even thought about joining the Navy Reserves at that point. But they still didn't like my Fibromyalgia any more than they had when I'd gotten the honorable discharge in 1981. LOL Migraines are Okay. Fibromyalgia is not. 

So you wonder why on top of this camel I just had to add another straw, huh? We're all immortal at 30 or so aren't we?

Tell it like it Is...

  From a family of diabetics, I started out a hypoglycemic. I spent many years of my childhood getting 5 hour glucose tolerance tests to find out just how badly hypoglycemic I was. (Bad.)  For those who haven't had the pleasure, you get a nice cup of glucose to drink in a minimal time, and if you are really unlucky they flavor it like a pop flavor you like. You will probably never drink that flavor pop again because the glucose is so sickeningly sweet it puts you off that sugared flavor for the rest of your life. (Orange and coke went away that way for me, until I got smart and just drank it straight.) Then your blood is taken at half hour and hour intervals for 5 hours and your other symptoms such as mania or sleepiness are noted.

I've been blessed with "classic migraines," since before my menses hit at 10. I think my first migraine hit at 8.  In that time of my family's past we were seeing a Osteopath for a doctor. He believed in "adjusting the neck," for migraine pain. Because of the pain and horror of those sessions and how they increased the pain in my neck I have refused to ever see a chiropractor and I would barely see my message therapist. I only went to her because she was a friend long before she learned to give massages.


I had some of the really scary vision effects and aura hit me in Middle School so by High School I was on a full preventative regimen and rescue drug; aspirin was where you started way back when, but when five at a time didn't help and you accidently gave yourself aspirin poisoning you moved to your own feverfew plant: cafergot, fiorecet, fiorinal, Inderal and other beta blockers all before I was 18 to try to control the pain as well as shots of Demerol and Phenergan in the ER to knock me out so that I could sleep through the piercing pain. I remember many trips with me whimpering and my face buried in my Dad's chest to block out light and sound and my knuckles clenched until they were fisted white.

None of this stopped me from playing sports full tilt hard enough to do permanent damage to my ankles that required surgical repair, and my back which made me the proud owner of one of the first TENS packs. (Transcutaneous Electrical Nerve Stimulation) The unit looked like a big, blue plastic sticky cube with a battery on a Velcro belt that went around your body with the electrode (Yes, single.) being placed over the area of worst pain.

The newer units are about the size of a cigarette pack and hold a 9 volt battery and have 2 sets of electrical leads that plug into the top to attack to electrodes that you can stick quite a few places on your body. You can buy reusable electrodes that the leads connect into and adjust the strength of the pulse and the amplitude of the electrical wave. It works on the theory that it interferes with the pain signal sent through your nerves and so you don't feel it, and it works to a certain extent.  But I described it recently to my Internist as throwing a cup of water at a forest fire...when ALL the nerves there are sending signals and only SOME are interrupted it is only partially effective.

TENS unit with electrodes and wires

I've finally learned to tell it like it is in physical therapy, and with doctors. Its only taken me over 40 years to break my early training! LOL

For my other thoughts on current poisons some of which are colors you can see my other blog. But we are also given poisons as medicine. These things we just down on the doctor's say so. The supplements and vitamins we ingest as well. All are poisons in the wrong amounts. You can even poison yourself with too much water. So I'm pretty careful with how I keep track of what I use. I'm planning to write a blog post about it here and I'll link to it.