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.

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?