here's the latest M.edical U.pD.ate on me and the outcome of my appointment with DR H on friday.
i am still off of all ABX. whoop! whoop! 5 months now.
i am still on a treatment regime. i am on meds to control my mast cell issues. and for the past 2 months, the primary focus has been detoxing my body and bringing down my viral load. we've managed my viral load quite successfully with a host of natural remedies. mono-lauricidin. immunvira. oregano oil. to name a few. and eek! even colloidal silver. it took some convincing on DR H's part to get me to try that one. the whole blue man myth had me a little nervous...all i need after all i've been thru, is to come out on the other side of this looking like a smurf.
i am doing pretty darn good - as long as i avoid all fruits and vegetables (yes, that is still a major issue), and i have to be vigilant about getting in strategically scheduled rest periods between activities. i still have days where i am flat on my back in bed...that usually being the result of me overdoing it. my bad days are no longer the horror they once were. PTL! some days it is still a struggle to accomplish a series of tasks. however, that pales in comparison to the many incredible feats that i have been able to do.
ability is an absolute gift to experience.
the whole learning to pace myself and taking it easy even when i feel well enough to keep going and do more is hard. i feel bad to not do if i know that i could. i feel guilty just sitting or resting and "taking it easy". it's a weird place to be in...but i'll gratefully reside in it. yes, i'm getting re-acquainted with the "old me" and i am discovering how this "new me" interacts and functions in the world. bridging the gap between the two is a challenge, yes, but i'm sure having a whole lot of fun doing it...and what a delight it is.
cherished moments. hilarious moments. tender moments. triumphant moments. difficult moments. every moment is a precious gift. yes, in a strange way, even the difficult moments are.
being free of crippling pain means dressing up and wearing heels. being able to wear my wedding rings. making my bed. making dinner. vacuuming. brushing my daughter's hair...and dyeing mine and even wearing silly hats...
being free of crippling pain means holding hands. giving hugs. being hugged. it means receiving great big squishy hugs and not cringing and wincing. never underestimate the power of touch... and never take it for granted.
being free of crippling pain means planning to go somewhere and actually getting there. it means saying, "yes, i can"...and then being able to follow thru. it means being fully present in the moment.
freedom is no earplugs, no paper plates, real cutlery and eating at the table together as a family.
being free of crippling pain means socializing. going to parties. going to church. being with family. being with friends. being with friends that are considered family.
and
it means painting!?!
not artsy fartsy painting but the "gimme a paint roller so i can give the walls a fresh coat of paint" type of painting. yes, the 5 gallon bucket of paint that's been sitting in the garage for the past 6 years has finally and triumphantly been used. i love painting. always have found it very therapeutic. prior to lyme, i was dabbling in the interior decorating industry - and did a fair share of painting other people's homes - you know, back in the good ol' days when "faux" paint finishes were all the rage. yes, that was a long time ago. anyone care for tuscan inspired walls? nope. didn't think so.
so yes, me oh my, i've done a lot over the last 2 months. at times, my exuberance and zest for life has overridden the protests of my body - which i've ignored and then learned the hard way. i can do but i mustn't push to do. if i do, i pay the price. harumph. i have to remember that my body is still in a fragile and weakened state. DR H warned me about doing too much too soon. i need to slow down and take it easy. pshhhht! yet, i know he's right. in fact, i'm currently in a bit of a pickle - which is most likely attributed to "biting off a bit more than i can chew" sort of thing.
at the beginning of january, i was given the opportunity and had the great priviledge of getting to go on a youth trip with graham, his co-workers, their families and about 22 junior high and high school students. we spent the weekend up in manning park. that's right. a weekend away with 20+ teenagers in the mountains. i'm sure a few folks feel faint just at the mere mention of that. i, on the other hand, had a ball. did i totally over do it? absolutely. was it maybe a bit too much, too soon? probably...and i'm in a bit of bind now because of it...but boy, was it wonderful to be able to do something i love and have missed so much.
i used to be a youth worker volunteer. in fact, that is how graham and i met. he was looking for volunteers...and put an "ad" in the church bulletin. i responded. and the rest, as they say, is history. he was looking for volunteers and got a wife! ha ha. true story.
right from the start of our relationship, our dream was to have a home open to the kids that graham works with. his ministry and our hearts revolve around "at risk" youth. i went thru a lot of pain in my teen years and as a result have a heart for hurting kids. i always envisioned our life and home serving as a refuge for the youth God brings graham into contact with. yet, life has not at all gone how we had hoped and planned. our home has been a far cry from a place of refuge, rest and comfort. lyme has meant letting go of a lot of our dreams and plans. one day they will return...the old dreams and hopes and even new ones may emerge from the ashes. i finally see that as a possibility again. the trip to the mountain re-awakened that in me.
unfortunately, it possibly may have re-awakened some lingering lyme bugs as well. proper rest is so crucial. you'd think with all the activity and excitement, i would have had no trouble sleeping but i did. i even brought sleeping pills but they did not help. and as the weekend rolled to a close, i started to see some "red flags". the day after our return, i was flat on my back in bed. pain and fatigue my companions. yet, i wasn't completely alarmed as i totally expected it. i was certainly relieved that i was thru the worst of it within 24 hours. however, i've just not quite been able to get a leg up on my fatigue and pain since.
there is much that it could be. yes, the fatigue could be associated with a flare of lyme. yes, the muscle fatigue and burning, searing pain could be lyme or babs or both. it could just as well be due to vitamin deficiencies. makes sense. or it could even be that all the activity has got some toxins circulating.
it could very well be any of those things. i'm concerned. DR H is concerned. HOWEVER, i'm on the road to recovery and i'm mentally staying that course. yes, we may still need to beat back some bugs, but we've got the upper hand now.
i am in a place of rediscovery
and
recovery
and
i am also covered in zits.
on a daily basis, i'm either covered in hives or zits. i'm so cute. the breakouts (face and back) are indication that my body is dumping toxins. that's a good thing but we must bind them up and flush them out and not allow them to re-circulate.
DR H is starting me on an intensive toxin binder. i also have lipemia (fat in my blood) so he's starting me on a binder called cholestyramine. it's a drink that has the consistency of sand. yum.
i am to drink sand 3 times a day for the next week and then add in some herbal antimicrobials. cumanda and lyme transfer factor. these are specific for lyme. fortunately, avery is already on these so i can just tap into her supply. (the "benefits" of having a house full of lymies). i will be on high doses of these for one week. this will give us somewhat of a clearer idea of what the origin of my recent out cropping of symptoms is due to based on my body's response to these therapies. what is very clear right now, is that this is fairly critical time (for both parker and i). during my appt, DR H remarked how difficult we have been to treat and how our bodies have never reacted or responded normally.
"you guys are weird." he said. "you're weird. parker's weird. even your husband is weird." ha ha. true 'dat!
with our complexly weirdness in mind, DR H wants me (and parker) to be seen by DR D in 2 weeks. he is concerned that my symptoms may spell out the need for a short course of either oral or IV abx. he reassured me that if this is the case that it will only take a short course of 6-8 weeks to re-gain control. however, if at all possible, he's wanting to keep me off the pharmaceuticals. there are lots of potent herbs and homeopathic remedies we can utilize. i love that i have a doctor who's not just all about pharmaceuticals. obviously, some intense decisions need to be made and being seen in-office is ideal but not exactly always realistic when your doctor is a 2 hour flight away. fortunately, DR D is only a 2 hour drive away. it is wonderful that DR D and DR H work together to provide care. to fit us in on such short notice, DR D is seeing us on her day off. we're so grateful for the dedication of our docs to get us healthy.
i dyed my hair the color of merlot this week...
i figure if you can't drink it, you might as well wear it.
ok. i know that seemed to come out of left field. it's my attempt at a not so seamless segue about cocktails. as per DR H's orders, i'll be heading out shortly for my first cocktail...a myer's cocktail that is. not nearly as glamorous as a cosmo and about quadruple the price. if it helps with my energy levels, than DR H will move to help us set that up at home. cool. i could have my own bar before this whole journey is over. after all, i am proficient at re-constituting and mixing IV abx...after that, mixing and making my own cocktails should be a breeze. of course, it's not ideal (is anything about this journey ideal?) but it can be done far cheaper (what? something cheap on this journey?) at home than at a naturopath's office.
however, safety before money. my first cocktail will be supervised under the watchful eye of a doctor.
and lookee here, clock says it's just about cocktail hour, time for me to head out.
cheers!
i am still off of all ABX. whoop! whoop! 5 months now.
i am still on a treatment regime. i am on meds to control my mast cell issues. and for the past 2 months, the primary focus has been detoxing my body and bringing down my viral load. we've managed my viral load quite successfully with a host of natural remedies. mono-lauricidin. immunvira. oregano oil. to name a few. and eek! even colloidal silver. it took some convincing on DR H's part to get me to try that one. the whole blue man myth had me a little nervous...all i need after all i've been thru, is to come out on the other side of this looking like a smurf.
i am doing pretty darn good - as long as i avoid all fruits and vegetables (yes, that is still a major issue), and i have to be vigilant about getting in strategically scheduled rest periods between activities. i still have days where i am flat on my back in bed...that usually being the result of me overdoing it. my bad days are no longer the horror they once were. PTL! some days it is still a struggle to accomplish a series of tasks. however, that pales in comparison to the many incredible feats that i have been able to do.
ability is an absolute gift to experience.
the whole learning to pace myself and taking it easy even when i feel well enough to keep going and do more is hard. i feel bad to not do if i know that i could. i feel guilty just sitting or resting and "taking it easy". it's a weird place to be in...but i'll gratefully reside in it. yes, i'm getting re-acquainted with the "old me" and i am discovering how this "new me" interacts and functions in the world. bridging the gap between the two is a challenge, yes, but i'm sure having a whole lot of fun doing it...and what a delight it is.
cherished moments. hilarious moments. tender moments. triumphant moments. difficult moments. every moment is a precious gift. yes, in a strange way, even the difficult moments are.
 |
| went to a high tea and we all got to make our own "fascinator" |
 |
| um, yeah, harrison insisted on making one too |
being free of crippling pain means holding hands. giving hugs. being hugged. it means receiving great big squishy hugs and not cringing and wincing. never underestimate the power of touch... and never take it for granted.
being free of crippling pain means planning to go somewhere and actually getting there. it means saying, "yes, i can"...and then being able to follow thru. it means being fully present in the moment.
freedom is no earplugs, no paper plates, real cutlery and eating at the table together as a family.
being free of crippling pain means socializing. going to parties. going to church. being with family. being with friends. being with friends that are considered family.
and
it means painting!?!
not artsy fartsy painting but the "gimme a paint roller so i can give the walls a fresh coat of paint" type of painting. yes, the 5 gallon bucket of paint that's been sitting in the garage for the past 6 years has finally and triumphantly been used. i love painting. always have found it very therapeutic. prior to lyme, i was dabbling in the interior decorating industry - and did a fair share of painting other people's homes - you know, back in the good ol' days when "faux" paint finishes were all the rage. yes, that was a long time ago. anyone care for tuscan inspired walls? nope. didn't think so.
so yes, me oh my, i've done a lot over the last 2 months. at times, my exuberance and zest for life has overridden the protests of my body - which i've ignored and then learned the hard way. i can do but i mustn't push to do. if i do, i pay the price. harumph. i have to remember that my body is still in a fragile and weakened state. DR H warned me about doing too much too soon. i need to slow down and take it easy. pshhhht! yet, i know he's right. in fact, i'm currently in a bit of a pickle - which is most likely attributed to "biting off a bit more than i can chew" sort of thing.
at the beginning of january, i was given the opportunity and had the great priviledge of getting to go on a youth trip with graham, his co-workers, their families and about 22 junior high and high school students. we spent the weekend up in manning park. that's right. a weekend away with 20+ teenagers in the mountains. i'm sure a few folks feel faint just at the mere mention of that. i, on the other hand, had a ball. did i totally over do it? absolutely. was it maybe a bit too much, too soon? probably...and i'm in a bit of bind now because of it...but boy, was it wonderful to be able to do something i love and have missed so much.
 |
| pelting kids covered with shaving cream with cheezies |
 |
| me dominating at playdoh pictionary...oh, yeah, i still got it |
 |
| me in the kitchen helping to feed the masses and no one got food poisoning? miracles do happen |
there is much that it could be. yes, the fatigue could be associated with a flare of lyme. yes, the muscle fatigue and burning, searing pain could be lyme or babs or both. it could just as well be due to vitamin deficiencies. makes sense. or it could even be that all the activity has got some toxins circulating.
it could very well be any of those things. i'm concerned. DR H is concerned. HOWEVER, i'm on the road to recovery and i'm mentally staying that course. yes, we may still need to beat back some bugs, but we've got the upper hand now.
i am in a place of rediscovery
and
recovery
and
i am also covered in zits.
on a daily basis, i'm either covered in hives or zits. i'm so cute. the breakouts (face and back) are indication that my body is dumping toxins. that's a good thing but we must bind them up and flush them out and not allow them to re-circulate.
DR H is starting me on an intensive toxin binder. i also have lipemia (fat in my blood) so he's starting me on a binder called cholestyramine. it's a drink that has the consistency of sand. yum.
i am to drink sand 3 times a day for the next week and then add in some herbal antimicrobials. cumanda and lyme transfer factor. these are specific for lyme. fortunately, avery is already on these so i can just tap into her supply. (the "benefits" of having a house full of lymies). i will be on high doses of these for one week. this will give us somewhat of a clearer idea of what the origin of my recent out cropping of symptoms is due to based on my body's response to these therapies. what is very clear right now, is that this is fairly critical time (for both parker and i). during my appt, DR H remarked how difficult we have been to treat and how our bodies have never reacted or responded normally.
"you guys are weird." he said. "you're weird. parker's weird. even your husband is weird." ha ha. true 'dat!
with our complexly weirdness in mind, DR H wants me (and parker) to be seen by DR D in 2 weeks. he is concerned that my symptoms may spell out the need for a short course of either oral or IV abx. he reassured me that if this is the case that it will only take a short course of 6-8 weeks to re-gain control. however, if at all possible, he's wanting to keep me off the pharmaceuticals. there are lots of potent herbs and homeopathic remedies we can utilize. i love that i have a doctor who's not just all about pharmaceuticals. obviously, some intense decisions need to be made and being seen in-office is ideal but not exactly always realistic when your doctor is a 2 hour flight away. fortunately, DR D is only a 2 hour drive away. it is wonderful that DR D and DR H work together to provide care. to fit us in on such short notice, DR D is seeing us on her day off. we're so grateful for the dedication of our docs to get us healthy.
i dyed my hair the color of merlot this week...
 |
| ok. so it doesn't look burgundy but it really is. |
 |
| the proof is in the sink...remnants of my new deep merlot hue |
however, safety before money. my first cocktail will be supervised under the watchful eye of a doctor.
and lookee here, clock says it's just about cocktail hour, time for me to head out.
cheers!
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