i'll start off with the juice's trademark- the fact that i am wide awake at 3:50am typing this posting. on such a high dosage of steroids, sleep is pretty much stricken from the vocabulary. although i was actually able to fall asleep from midnight until 3:15, which is pretty unusual give my track record on the drug. and it was definitely better than the "power nap" i snuck in from 5:30 to 6:30am early wednesday, even with the 24 mg of AmbienCR they prescribe to counter the effect. my insides feel like they are high on drugs at an all night rave, screaming "Aauughh %@*&#!" (they better stop screwing around and get to work halting the intensity of my symptoms!!) i've also been craving ice cream constantly (i had 2 bowls tonight- with 2 brownies!) and going through episodes of intense itching. not to mention the major backup going on in my digestive tract (the daily scoops of MiraLAX have increased from 5 to 8- i suggest Crystal Lite's "Fruit Punch" as the mixer.) if this isn't enough, i'll throw in breaking out in night sweats (but during the day!) and all the water i've still managed to retain!!
hmmm, maybe i should back up and fill in some of the blanks as to how we got here. as you know from last night's posting, 1 of the 3 atrocities that occurred in my health explosion this week is the fact that i am experiencing a
because i have experienced the majority of ms symptoms (either in the past, or currently), an exacerbation in my case is a sudden worsening of a symptoms lasting at least 24 hours. (for others with a smaller percentage of ms-related symptoms, an exacerbation could be the appearance of a new symptom, also lasting at least 24 hours. unfortunately, most flares last anywhere from days to weeks, even to months. this is where the high dosage of corticosteroids comes in- in theory, they will cause an exacerbation to be shorter and/or less severe. at my doctor's office, treatments are given in a private infusion room at the ms clinic, administered by a nurse on staff. due to the instability of my veins, have to wrap my arms in warm towels to help bring the veins to the surface. they usually call in a dedicated IV Team (the team roams the hospital going from department to department starting lines) to insert the port. calling in the pros for this part of the process is important because the port has to last for the duration of your treatment- in my case, until friday.
hands down the worst part of this flare is dealing with TN, trigeminal neuralgia, (what you hear me frequently refer to as "facial pain") for a week straight with pain levels at 9-10 out of 10. the pain has been all-consuming, and nonstop (i wake up with it, i go to sleep with it)- even carrying on a conversation has become daunting, as it turns the aching sears of pain into full fledged throbbing. you might have noticed that your calls are going through to my voice mail, and i have gotten back to you through email- it is for this reason alone. (and not my usual dodginess.)
for those of you that have ever had a migraine, imagine that same degree of pain radiating down your cheeks and jaw. if you haven't suffered from a migraine, all i can say is that it feels like someone is stabbing you repeatedly down both sides of your face. although i suffer from TN pretty regularly, the agony of the past week goes beyond what i can normally put up.
the technical aspect: the pain comes from a neuropathic disorder of the trigeminal nerve (the largest of our cranial nerves- look for the yellow markings on the brain in the diagram to your left). in a case of TN, an irritant is pressing on, or disrupting, the nerve itself, making the face hypersensitive and causing episodes of intense pain in your eyes, lips, nose, scalp, forehead and jaw. even normal actions such as chewing, talking, brushing your teeth, a light touch, become incredibly painful. while TN is not exclusive to MS, experiencing the condition on both sides of your face is. as far as treatment is concerned, anti-convulsant drugs (i use Tegretol) are commonly used to decrease the spread of the hypersensitive electrical charges. unfortunately, long term relief is difficult to achieve for MS patients, since the medication rarely results in permanent pain control.medical history lesson of the day: to give you an example of just how painful this condition can be, it was frequently referred to as the "suicide disease" due to the large numbers of people taking their own lives before effective treatments were available.
the other acute worsenings also have to do with pain, but this time in my extremities- my feet and legs. it has gotten to the point where i cannot stand up at the bathroom sink to brush my teeth, unload the dishwasher, or stand in line without being crippled by debilitating pins and needles in both of my feet. the pain is even evident on the outside when i am barefoot or in sandals- my feet swell, and turn bright red/pink (almost like circulation is being cut off.)
as for my legs, a frequent bane of my existence, they have escalated back up the pain scale to a level 8-10 out of 10 on a daily basis. i tell my parents that an invisible man must be bashing a hammer repeatedly from my thighs down to my feet. fortunately, my new internist has put me back on the morphine patch, but when the pain has already escalated to this point, it is hard to get back down to a manageable level.
so welcome to meg's exacerbation experience. i do have some good news for you- as of tonight, i'm starting to get relief from the TN flare. the face pain has only been a 5 out of 10, which means my hands have gotten a much needed break from balancing cold packs on my cheeks throughout the day. hopefully this means we are turning a corner, but you should still expect another posting tomorrow at 2am.
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