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Talking with my wife yesterday, I got another bit of insight into how freaking intelligent my daughter is... (Yes, I am a very, very proud papa. She is the light of my universe and I am well aware of the fact that I am overly proud of her... sue me...
) This, incidentally, adds to my earlier assertion that, even if the vaccine was her trigger, there is no way we could ever really blame anyone other than our own genes for her condition, sadly enough... Evidently, at some point in the past few days, my daughter looked at my wife and said something to the effect of, "So, if this vaccine caused this to happen, why did it only make something I have felt my entire life worse?"You see... I have been telling my wife that she has fibromyalgia since she was a toddler... I saw the signs... they were there all along... yet, at the same time, she was a dancer. She was strong. She was, pound for pound, the strongest person in the family. She did acrobatic dance and could hold herself, with one hand on each side of the doorway between the kitchen and dining room, with her feet parallel to the ground, for an inordinately long period of time. In gym class when they did the fitness tests and the girls had lower goal numbers than the boys, she took offense to that and she and one of her friends who was in her dance classes would always be the ones to do the most reps, the most laps, the most pull-ups, etc... I had started to forget my early thoughts about the clear warning signs that she would have fibro later in life... But then again, I was like that too...
I danced until 8th grade. In 7th grade I tried to run track. I was the fastest runner in the 440 in the 7th grade, despite the fact that I was the shortest kid on the team. However, I was taking 3 dance classes a week and that combined with track practice 5 days after school was pure torture. Track and dance use totally different muscle groups and I hurt, EVERYWHERE. I thought that everyone hurt like that. Now I wonder if that was the case. Eventually, I was assigned to a relay team with the 8th graders because of an injury to one of them, but then dropped before the meet because the 8th grader was able to come back in time. There wasn't time to add me to the individual event, so i missed the first meet. That pissed me off a lot. The next week I got the flu and I missed the whole week of school. I never went back to track practice... I always said it was because of the meet, but in reality it was because of the pain I think.
Then came 8th grade. That was the year that I twisted my right ankle three times... The third time was the first day back in gym class, playing the same game that I had twisted it playing the last time, in the exact same situation: I went for the ball, the ankle buckled. But this time I hit the back of the knee of the kid defending me and he fell back, right on top of me... All of the tendons and ligaments went. I was on crutches for about 8 weeks. At the end of the year I performed in the dance recital and made the decision to quit dance. I wanted to concentrate on choir and theater in high school and didn't want to have to work around multiple dance classes per week. Once again, I think that deep down, it was probably the pain that was really what made me stop... Dance just hurt too much to keep going, especially at the beginning of the year after taking the summer off. (That was one advantage my daughter had. Her dance studio had summer classes so she didn't de-condition over the summer...)
It was a similar path in a lot of ways. It's just that my "trigger" event came much later in life. I had aches and pains all along. I started having stomach problems in college. They called IBS because they couldn't find anything wrong. Now I think it might be a gluten intolerance, but I'm still not sure... I also developed bursitis in my right shoulder. (It is a nice genetic thing that I got from my mother. Her mother had it, her sister got it in her wrist instead, my sister has it, my cousin has it too, and my son seems to be developing it too. It has to do with a muscle defect near the shoulder blade. Gotta love those genes!) I always had sleep problems. Waking up refreshed is not something that happens. In my early twenties I complained to my doctor about pain in my hands and fatigue issues. He said that if I was 15 years older he wouldn't be too surprised, but it was a bit odd for someone as young as me. He gave me vitamin shots for the fatigue. (Let me tell you that vitamin shots are one of the weirdest experiences I have EVER had! He warned me about it ahead of time and it was still freaky. You see, they give you the shot in your gluteus maximus, and you taste the vitamins in the back of your throat! I really DON'T want to know what the connection is between the muscles in my butt and taste buds, thank you very much!)
My trigger event was when my mother died. I know that I had issues before that. I know that I had been having sleep issues for a long time and I have lots of questions about whether I could have finished graduate school if I didn't have these conditions... (I have always said that I quit because I didn't enjoy the research anymore and I was tired of the "tiny little manipulations" used to make a new experiment with absolutely no theoretical implications so you could make it in the publish or perish academic environment. But I have finally admitted to myself that I also was pathetically uninspired. I couldn't think of original research. All I could think of were those minor changes to other people's work. I was creatively bankrupt and, as my mother always pointed out, I was the creative one... Regardless of the fact that I had entered a scientific field, it still required a creative mind to come up with original research ideas and I was tapped out. I also did it to save my marriage... and that barely worked. My wife was just about ready to leave me by the time graduate school was done breaking my psyche down into its component parts and leaving me, most nights, sitting on the sofa, in the dark, with a 5-disc cd changer on shuffle playing 4 Dire Straits CDs and Steely Dan's greatest hits, drinking a glass of single malt scotch, neat. I was not at a good place...)
But it was after my mother died that I began having full disease symptoms. Chronic pain in all four quadrants of the body, fatigue that left me marginally functional in the late afternoon, insomnia, periodic times when I would have memory or cognitive problems where I just couldn't function at the level that I was accustomed to... It took years of this before I actually got diagnosed though. For one thing, the sleep issues were one of the big things and I had small children. My wife and I talked about it and she told me that any doctor would look at me and point at the baby and say, "There's your sleep disorder!" And they would have been right with the first one! He was a nightmare! It is lucky for him that he had a father who functions with no sleep on a regular basis, otherwise I don't know what would have happened... LOL
When my daughter was 2 or 3, interestingly, about 15 years after I had first complained about these type of symptoms to the other doctor... I finally requested both a sleep study and an appointment with a rheumatologist. I had convinced myself, partially because of what my mother had died of, but also because of my symptoms, that I had rheumatoid arthritis. The rheumatologist examined me and determined that I had fibromyalgia. The exam for fibromyalgia was one of the most disconcerting experiences I have ever had. She started poking me and asking if it hurt. These were light pokes, the kind that shouldn't hurt, but everywhere she touched me DID hurt, sometime a LOT. By the time she was half way through my brain was freaking out, thinking "STOP! Why are you hurting me like this? Why does that hurt? WTF is going on here?!?!?!??! At the end of the tender point examination, as I now know it is called, of which I scored a perfect 18 of 18 tender points causing pain, she said, dismissively, "You have fibromyalgia, you primary doctor can take care of that..." and I basically felt... dismissed. No explanation of what fibro was. No hand-outs if I remember correctly. I had to go home and search for it on the internet. She basically was saying, "You're not my patient... LEAVE!" (Incidentally, that night I had my sleep study, so I didn't really have very much time to search for stuff about fibro before I had to go get my sleep study done...)
Luckily my primary care physician is more well versed in dealing with fibromyalgia and does consider it a real disease. We have worked together to manage it as well as we can over the years and I am still able to work.
So, anyway... It is clear that my daughter has put two-and-two together and realized that, even if she was triggered by the vaccine, she had the building blocks for this underlying condition laying in wait all along. Next week when we move her into her dorm room, I plan to have a talk with her about how these types of diseases work and triggers so she understands what is going on. I'll explain how mine was triggered when my mom died, but had been building during grad school as well... Stress is a bitch... She also insisted that we order genetic testing so we can find out what known predispositions she has to any currently known autoimmune or other diseases. We did send her to the top school for Mathematics and Science in the state... She wants, and respects, the science, even if she is really there for the math... We got two so I can get tested as well. (My wife wants to find out how respected the testing company is by the doctors prior to getting herself and my son tested. It is a reasonably priced place, about $200 per test. If they come up with positive results and the doctors don't respect the tests, though, we might spring for the Mayo clinic $2000 version for our daughter. If she has markers for other autoimmune diseases she really should know, since you are at higher risk once you have one autoimmune disease...)
TL;DR: My daughter realizes that she has had warning signs of this type of disease for most of her life and I need to explain to her how autoimmune (and similar) diseases work with triggers and such so she gets what happened and understands how she went from feeling a little bit like this to feeling so bad all the time... Luckily? for her, she has me, who has gone through the process, and we're about to take a two day trip together to move her into her dorm room... Nice bonding time...
EDIT: Thanks Kyle - I agree. I also learned a lot and your questions spurred me to improve my research. I can always count on NPR to help with that! You guys are THE BEST! (And you know it!)
Statistics: Posted by Zen — Wed Aug 10, 2016 11:05 am
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