wow, june is almost upon us...where in the world did the month of may go?
oh, that's right, it passed by in a whirlwind whilst my head was bent over a toilet bowl. blah, blah, blech!
yes, i am still vomiting. every day since march 14. i believe i'm at 75 days straight...not that i'm counting or anything.
i had full intentions of plying my blog with lyme awareness for the month of may but this vomiting business has really taken a toll on my body and mind. the truth is, as the vomitous weeks have piled up, i've become increasingly fatigued and horribly depressed....and just totally fed up (no pun intended) with life and i haven't felt much like writing about it or lyme or anything.
i honestly don't know how i'm still standing, let alone functioning or parenting or homeschooling. most days, i plod thru the day in a zombie like state. the longer the barfing has gone on, the less stamina i have and the shorter my days have gotten. the last couple of weeks i've been dragging myself out of bed at 10am and then crawling back into bed by 3pm. i am exhausted from the endless rounds of the punishing aerobic work out it is to heave my guts out multiple times a day.
some days, i throw up everything and anything eat - morning, noon and evening. the all day barfing episodes are varied and unpredictable...but without fail, i vomit up dinner every night.
it happens EVERY. SINGLE. NIGHT.
i dread the evening. i dread the day. i dread the aftermath of eating.
oh, and did i mention, i still react to all fruits and vegetables?
i am obviously nutritionally depleted. i have bags under my eyes. my hair is falling out. my nails are splitting. my face, arms and legs are puffy and swollen due to edema. i'm having difficult-to-control hypoglycemic episodes.
i am listless.
i am restless.
i am twitching.
i am grumpy.
i am irritable.
i am frustrated.
i am exhausted.
i am having terrible mood swings to boot.
yippeee, i'm a boatload of fun to be around.
oh, and if you haven't noticed,
i am currently sarcastic, caustic and cynical.
which is also a big reason why i haven't been posting. i don't like exposing this side of myself. for pete's sake, who wants to be exposed to it? i tend to hide it well in public. i'll put on a happy face but under it all, my soul softly weeps.
we were down to california last week to see DR H. immediately following our first appointment (on tuesday), i was hooked up to an IV nutrient/mineral/vitamin drip for 2 hours. the following day, i literally wept because i felt SO. MUCH. BETTER. i was so relieved to have some energy and mental stability again. you get used to functioning in this spaced out, zombie like state that you no longer realize how bad you feel or how out of it you are, so when you get your zip back, then it hits you - the past 2.5 months have been bad. this is just really bad.
i broke down in tears during our second appointment (on friday). i just didn't want to go back to Canada. i want to stay close to my doctor. i want to be where i am taken care of. where i don't have to ask, beg or fight for some sort of medical intervention. with tears sliding down my cheeks, i just sat there, staring at DR H. i have to go back to canada - but what the hek are we going to do once we are back home?
DR H's office is trying to co-ordinate some support here via our family doctor, DR A. he is aware of the barfing because i have seen him several times since it all started. he has prescribed several different meds to try and get the vomiting to stop. but that is it. initially, he suggested he would intervene with some sort of IV intervention - but in order for that to occur, either my weight loss would have to be severe - or - i'd have to be vomiting blood.
wow, really?
i literally have to be on death's door before i can get help?
to be fair, DR A is a lovely and compassionate doctor. he has always been very supportive of my treatment for lyme. i don't want to be angry with him at all...but i am incredibly frustrated...it's not him. it's our medical system - it seems to be reactive rather than pro-active. blah, blah, blech! and you know what's really dumb? i just read what i wrote and i feel BAD about ragging on our medical system! even after all that we have been through. (clearly, i am seriously unbalanced.) blah, blah, blech!
speaking of "after everything we have been through" scenario (this in regards to our son), i still feel the need to be selective in what i post about him. we are still fighting for his right to receive his USA treatment free from the fear of being taken away from us. we continue to desperately covet your prayers over this situation. it is far from resolved. we have asked our MLA to advocate on behalf of our boy and our plight. the process is moving painfully slow...and it is testing our endurance and patience...
the only time i feel "free" and "safe" is when we are in the USA.
medically speaking, our boy is not doing well. in the weeks following the forced removal of his PICC line & IV treatment, the decline was swift. DR H and DR D worked like crazy to re-adjust oral medications in order to stabilize him. their efforts did prove fruitful in stopping the initial backslide however, his health has been teeter-tottering in an unstable state ever since - we knew it could go up or continue to go down. unfortunately, the downward trajectory continues to be the status quo. this is hard to explain or help those without lyme understand - especially since he often "appears" to be well. the best way i can think to explain how the downward trajectory is by using an example...he was still on IV treatment during our august visit to DR H. on that trip he only needed his wheelchair in the airport/ travel days. this time, he only had ONE day when he wasn't in his wheelchair. there are many other signs and symptoms that his body and it's systems are not holding up under the onslaught of infection but that is the simplest and easiest comparison.
i might add, that he is still so much better than how he was when he first started treatment. we want to keep it that way - and keep moving toward fully restored health! the last thing anyone wants is for our boy to slide back into the pit he was in 2 years ago. DR H has once again, re-adjusted oral medications and treatment...but we are fighting a battle with one hand tied behind our back as we do not having the full of armament of weapons at our disposal. DR H has given us a timeline for this new treatment to take hold, if it does not turn things around in the time allotted, than we will have to move forward with much more aggressive treatment. your prayers and support over this are invaluable to us.
as far as the cause of my vomiting? well, that is still under investigation. DR H has several ideas as far as what the underlying cause of vomiting is...either an atypical presentation of mycoplasma infection or bartonella. or it may be both - i am symptomatic for both. the other quandary at the moment is figuring out what symptoms are infection related or being caused by my nutritional deficiencies. all i know right now, is that i'm in deplorable and fragile shape. there is great concern that if we can't get the vomiting to stop that this whole situation is a train wreck waiting to happen. blah, blah, blech!
we got home from SF on saturday. i honestly had very mixed feelings about being back. as aforementioned in this post, there are multiple reasons for that. i was on the verge of tears for most of the flight home. i tried not to think too hard about anything in order to hold it together. that only lasted 24 hours. on sunday evening, the damn burst. my vomiting was so bad the whole day (the flying exacerbates it) that by evening, i was just physically drained and emotionally gutted. there are some days when it just all hits me and it is just all way too much to cope with.
i just curled up on my bathroom floor and bawled my eyes out. blah, blah, blech!
sigh.
ok, i feel bad to leave this post on such a sour note. i am somewhat embarrassed to complain and whine so much - after all, we did have some fun while we were away. it was not all blech!
i got to spend 90 glorious minutes browsing through target, ross and marshalls ALL BY MYSELF. thanks to my IV nutrition i actually had some pep in my step and didn't just dazedly meander thru the isles in a fog. it was awesome! we also spent several hours on the beach in santa cruz. this was the ONLY day that parker was not in his wheelchair. he had a wonderful day and was able to play in the waves. we soaked up that sight and the warm, sunny weather we enjoyed for the entire trip.
we also visited the san francisco children's creativity museum (free admission- nice benefit of homeschooling!). we didn't see much of it as we arrived only an hour and a bit before it closed. we spent that time in their clay-mation studio. oh my word! in my opinion, this is the best place ever! it was the highlight of my trip! really! - i dare say, it even edged out my shopping excursion...yes, really, it actually trumped target! ahhh, i can't believe that just came out of my mouth! blah, blah, blech!
oh, that's right, it passed by in a whirlwind whilst my head was bent over a toilet bowl. blah, blah, blech!
yes, i am still vomiting. every day since march 14. i believe i'm at 75 days straight...not that i'm counting or anything.
i had full intentions of plying my blog with lyme awareness for the month of may but this vomiting business has really taken a toll on my body and mind. the truth is, as the vomitous weeks have piled up, i've become increasingly fatigued and horribly depressed....and just totally fed up (no pun intended) with life and i haven't felt much like writing about it or lyme or anything.
i honestly don't know how i'm still standing, let alone functioning or parenting or homeschooling. most days, i plod thru the day in a zombie like state. the longer the barfing has gone on, the less stamina i have and the shorter my days have gotten. the last couple of weeks i've been dragging myself out of bed at 10am and then crawling back into bed by 3pm. i am exhausted from the endless rounds of the punishing aerobic work out it is to heave my guts out multiple times a day.
some days, i throw up everything and anything eat - morning, noon and evening. the all day barfing episodes are varied and unpredictable...but without fail, i vomit up dinner every night.
it happens EVERY. SINGLE. NIGHT.
i dread the evening. i dread the day. i dread the aftermath of eating.
oh, and did i mention, i still react to all fruits and vegetables?
i am obviously nutritionally depleted. i have bags under my eyes. my hair is falling out. my nails are splitting. my face, arms and legs are puffy and swollen due to edema. i'm having difficult-to-control hypoglycemic episodes.
i am listless.
i am restless.
i am twitching.
i am grumpy.
i am irritable.
i am frustrated.
i am exhausted.
i am having terrible mood swings to boot.
yippeee, i'm a boatload of fun to be around.
oh, and if you haven't noticed,
i am currently sarcastic, caustic and cynical.
which is also a big reason why i haven't been posting. i don't like exposing this side of myself. for pete's sake, who wants to be exposed to it? i tend to hide it well in public. i'll put on a happy face but under it all, my soul softly weeps.
 |
| in iv clinic at dr h's getting "fed" |
 |
| kids at in-n-out getting "fed" |
DR H's office is trying to co-ordinate some support here via our family doctor, DR A. he is aware of the barfing because i have seen him several times since it all started. he has prescribed several different meds to try and get the vomiting to stop. but that is it. initially, he suggested he would intervene with some sort of IV intervention - but in order for that to occur, either my weight loss would have to be severe - or - i'd have to be vomiting blood.
wow, really?
i literally have to be on death's door before i can get help?
to be fair, DR A is a lovely and compassionate doctor. he has always been very supportive of my treatment for lyme. i don't want to be angry with him at all...but i am incredibly frustrated...it's not him. it's our medical system - it seems to be reactive rather than pro-active. blah, blah, blech! and you know what's really dumb? i just read what i wrote and i feel BAD about ragging on our medical system! even after all that we have been through. (clearly, i am seriously unbalanced.) blah, blah, blech!
speaking of "after everything we have been through" scenario (this in regards to our son), i still feel the need to be selective in what i post about him. we are still fighting for his right to receive his USA treatment free from the fear of being taken away from us. we continue to desperately covet your prayers over this situation. it is far from resolved. we have asked our MLA to advocate on behalf of our boy and our plight. the process is moving painfully slow...and it is testing our endurance and patience...
the only time i feel "free" and "safe" is when we are in the USA.
 |
| heading to santa cruz (parker now spends a large part of every day asleep - either in bed or wherever he can rest his weary head) |
medically speaking, our boy is not doing well. in the weeks following the forced removal of his PICC line & IV treatment, the decline was swift. DR H and DR D worked like crazy to re-adjust oral medications in order to stabilize him. their efforts did prove fruitful in stopping the initial backslide however, his health has been teeter-tottering in an unstable state ever since - we knew it could go up or continue to go down. unfortunately, the downward trajectory continues to be the status quo. this is hard to explain or help those without lyme understand - especially since he often "appears" to be well. the best way i can think to explain how the downward trajectory is by using an example...he was still on IV treatment during our august visit to DR H. on that trip he only needed his wheelchair in the airport/ travel days. this time, he only had ONE day when he wasn't in his wheelchair. there are many other signs and symptoms that his body and it's systems are not holding up under the onslaught of infection but that is the simplest and easiest comparison.
 |
| getting blood work done at DR Hs |
 |
| the nifty laser vein finder thingie |
i just curled up on my bathroom floor and bawled my eyes out. blah, blah, blech!
sigh.
ok, i feel bad to leave this post on such a sour note. i am somewhat embarrassed to complain and whine so much - after all, we did have some fun while we were away. it was not all blech!
 |
| pure joy in the surf at Santa Cruz |
 |
| Making our Clay-mation movie in the studio at SF Children's Creativity Museum |
 |
| "Ophelia, The Shopping Diva Octopus" (MY clay-mation character) |
No comments:
Post a Comment