Tuesday, December 1, 2009


I try real hard not to whine on here. I feel like this is supposed to be an insightful and funny and non-depressing place. But today I feel the need to WHINE!!!!!!


My head is about to explode and I can't hold the stupid jumbo pumpkin of a head up!!! ARG!!!!

I have a lot more to whine about! I am so frustrated at this moment I could scream!!!

Ok. Now that that is mostly out of my system!


I missed fall, not that there is really a fall season here in Texas, but I don't want to miss winter and Christmas and the wonderful holidays and all of our traditions just because I can't see straight! I mean, that's pretty important, seeing straight....

My doc told me to make a list of the 5 worst symptoms I experience to give to the neurologist. But there are so many, and I don't want to narrow it down. What if the one I forget to mention really hits the nail on the head, so to speak??

Any help from my wonderful encouraging people? Which comes first the chicken or the egg (the headache or the insane vision/balance problems...)... I will admit it. I have fears about this discussion because every symptom I have can and has been blamed on some other coexisting condition that is just a part of EDS/being a stressed mommy....

Why is it that if it looks like a duck, quacks like a duck and waddles like a duck, why must they (being other doctors) try to make it into a horse???

Ok. I'm done for the night, going to veg in the big chair with my warm soft blankie and watch House and try not to let it urk me tonight!
That is after I wrangle the kids...


  1. A list for a neurologist who has studied for so many years of five symptoms!!

    If you just had a headache the type of which over the counter medication worked for then headache would not be on your list!

    The symptoms you get are severe and too complex to fit into a nice list. If this were me I would print out the above post - the whole lot and present that.

    If it were simple you could give the list to a chemist and he would get the appropriate medications from the counter and you would miraculously feel better, this is so not the case.

    The problem with being an informed patient is a list with five words is a little simplistic, however well meant. Try keeping it complicated as it is and let the neurologist do the thinking on this one - it is afterall his/her job.

    Oh and I don't doubt you would find being a mum a breeze if you didn't feel so awful so much of the time.

    Not sure how much of that makes sense but apart from the last paragraph I'd take the post along with pics.

    My son's neurologist likes video evidence of symptoms - which in your case could be difficult as pain is somewhat invisible.

    He may appreciate a diary of medical symptoms - say over a five day period, as a snapshot of what you are going through perhaps. Pain scores out of ten along with symptoms - to see if there is any chronological events at all. Apart from that my experience of neurologists is that they understand each person's symptoms are unique so talking to them helps.

    In this case a list is a little simplistic for diagnostic purposes perhaps? One thing I do if I ever pluck up the courage these days to see an 'important' doc is make a list of the salient points I want to get across for my own purposes, as points of referral, as I normally leave having missed out the most relevant information. Perhaps this is what the doctor is suggesting - which i think is a little more complex than a list!

    Good luck. (apologies for long comment - am a little befuddled in the brain today)

    Take care of yourself Trish. Out of all the blogs I read, I worry that you out of everyone pushes yourself to the limits & are so hard on yourself. By the way - its your blog, if you want to 'whine' you go ahead. By the way I don't see it as whining more telling it how it is.

    Thinking of you.

  2. You are awesome! You get me! Haha... I ALWAYS leave the offices having left out something important!!!! ARG! I have started a journal of sorts, not repetitive with times and all, but a daily "list of symptoms" that bug tme the most that day.. Right now it's that my left hand is aleep and tingling and it is taking 30 minutes to type a little comment.....

    And as many docs have tried to explain it as me keeping my arm to "bent" and pinching off nerves, yeah, how is almost straight and doign nothing.... Arg...

    Thanks so much!

    I wish I had the galls of some patients to go right out and give the doctors every thought in my head, I just get so flustered in the office and they cut me off and I forget SOOOOOO easy!! =) Goodnight with much thanks and gentle hugs!! (from forever far far away)