i posted this to one of the masto lists in response to someone asking essentially, "well if i get diagnosed, that doesn't really make things better does it?"
and yeah, honestly, you don't get diagnosed with something like this and then get cured. it's not even the same as other chronic illnesses where there are tried and true treatments that work for the majority of the cohort. since we're all so different in our triggers, it's a long process of trial and error to figure out what makes us feel fine vs. what sets us off. There are no easy answers.
but then, in life, when are there?
Sometimes I think that these lists are a double edged sword. On the one hand we have this strong and vibrant community of people we can interact with who know what we're going through. They get the weird idiosyncrasies of our lives. They understand how difficult it can be to go out to a restaurant or the ick we may feel when someone walks by wearing too much perfume. The downside is that we mostly seem to post to the lists when things are going bad. I know that when I'm feeling super well, I'm not asking questions, I may not even be home using my computer, so chances of my posting, "WHOOOO 3 months and counting without shocking" are pretty low.
When I first got sick, I was so sick I ended up with gastritis and lost like, 40 lbs due to malnutrition. I could not even make it to work without flushing and sweating and/or vomiting or having diarrhea. I started throwing up blood because the lining of my stomach and esophagus were so shot. It was absolutely terrible, and my husband had to start working from home because I was too scared to be left alone because I was essentially shocking every day and in the ER at least 1x a week. to put it bluntly, it fucking sucked and i saw no decent end in sight. i never thought about offing myself or anything even remotely that dark, but i remember feeling like i was about to turn 30 and my life had completely and utterly fallen apart. i was angry and really really angry because everything i'd worked towards had just collapsed and all i had to show for it was a torso covered in hives and some epi pens.
I started on gastrocrom and within a few months things really started to turn around, especially as I added more antihistamines and the like to my regimen. Now I work on jewelry, go visit friends for overnight visits in other states, exercise, ethan's back at working at the office...life is not 100% like it was before I got sick, but I've adapted as best that I can. Up until a couple of weeks ago I hadn't shocked in months...and when I did shock it wasn't really that bad...I was able to get it under control with meds, but more importantly, I -knew- what was going on. It was annoying it was happening again, but it didn't feel like the end of the world.
So yeah. I can only speak for myself, but I know that I don't post about my good days because I want them to be unremarkable...they should be in the majority and not warrant mention, if that makes sense. Yes my life is more restricted than it was when I was younger, and yeah that's kind of lame, but it is what it is, and all I can do is learn the best adaptive behaviors possible to move forward and be as fulfilled and happy as possible.
So that is the problem with mailing lists...we see the more negative sides of the illness since we're seeking support regarding living with an illness, not just simply living...so of course people write about the less fantastic shades of life. they're still there though
Tuesday, September 15, 2009
Monday, September 7, 2009
H1N1
So what are you planning in terms of this fall's flu season since it's apparently going to be harsh? Getting the shot? Not getting the shot? Fill me in!
couple things
This year I'm speaking at the annual TMS Conference (come see me be witty and mock pics of me getting my bmb!), and in addition I'm going to be taking part in some walk-a-thon fundraiser thing too. i feel like this is almost more important in light of the fact that a young woman recently passed away from mast cell leukemia (the worst variant of this illness) and it's really thrown me for a loop. i've only been "sick" for a couple of years, but aside from the 83 year old guy I mentioned in an earlier post, or Christopher Reeves (who had huge comorbid issues to contend with) this is the first time i've heard of someone dying from this. She was close to my age and it just frightens me. I think I'm almost more frightened since for whatever reason I can't determine I've been having shocky episodes lately. The timing was bad I guess (not that I really have any right to complain in this situation, as I only have ISM)
here be the link if you feel like donating:
http://www.tmsforacure.org/annualconferences/index.shtml#walks
it is, as always, appreciated. I feel sort of stupid posting this here, but in case any of you are not involved with the TMS or hadn't heard of the fundraiser, it's worth a shot at least.
-----------------
someone posted some information on masto and the diagnostic process, so i figured i'd share mine in case i hadn't.
long story short i've never been healthy. i was born way premature, jaundice, incubator, the whole 9. When i was little i'd get pneumonia at the drop of a hat. got mono twice (yet never chickenpox, or any variant of the varicella virus), allergies, asthma, whatever. i've always had problems with fatigue and bone pain...though my doctors didn't take me seriously because i -did- stuff. instead of bawling on the couch i worked full time, went to school at night, worked out...i pushed myself so hard to get through the fog that was in my head that it seemed like i was healthy.
in 2007 i started having severe abdominal pain. a CT scan showed some problems with my intestines (yay) but also some sort of "thing" in my spine. I think it was a hemangianoma. so i went to have an MRI of it. the mri was aborted after a few minutes due to my back getting hot (my back is tattooed). waiting for my partner to pay for the parking at the hospital, i was nearly dropped by this overwhelming sensation of bad. it felt like all the moisture had been sucked from my eyes and skin, and this disgusting metallic taste filled my mouth. my face went numb, my heartrate went through the roof and i nearly collapsed getting me to the ER. no one knew what was wrong with me at the time so it was chalked up to panic attacks. 3 days later i was vomiting blood, both the black gritty stuff from your stomach and the bright red stuff from your throat. still panic attacks. a month later i'd lost about 40lbs and was sickly thin, still panic attacks. modern medicine someone missed that it was anaphylaxis. good job Beth Israel, that's why I tell people to avoid you like the plague now.
my stomach started mottling and i went to see a dermatologist who noticed spots all over my back and arms. i'd had one biopsied a few years prior and the results were "high in histamine" though no follow up was prescribed. the new dermatologist nearly went through the roof when he saw this and apologized for his colleagues negligence. from there i had another biopsy, extensive bloodwork, and a 24 hour urine histamine. the biopsy showed high histamines, the blood showed high tryptase, and the urine showed high histamine. from there i was referred to a masto specialist who redid the tests and eventually everything was reconfirmed by a bone marrow biopsy.
so that's it in a nutshell.
-----
i've been really pissed off the past week. last sunday i shocked in a car (which i wrote about) and assumed it was an isolated incident. then this past friday, reacted again in a car (different car, same model. it's possible i've developed a sensitivity to german cars i suppose. ok not really). there were no similarities in my diet or behavior on either day as far as i can tell. i don't know if it was aftershocks, my kidney being a jerk again, a virus, or something else. all i know is that i'm not too keen to have had two episodes so close to one and other. i sent an email to two of my masto doctors asking for advice so we'll see if i have to up my meds. good times. today i spent about an hour in the courtyard of my building hooping, as i'm trying really hard not to let this get to me. give me a week shock free and i'll be set. aside from hating the shocks/episodes/whatever, i hate how the meds make me feel. i've been way hesitant to use epi (my experience thusfar has been using an epi inhaler, never the pens) but i hate how atarax makes me feel. really stupid and slow.
ANYWAY hopefully my welcoming september in by being all reactive is over with and now i can go back to things being ok. i'm trying way hard to be optimistic, especially as i have a ton of stuff to get done and don't feel like letting this get in the way if i can help it. because really, i get so annoyed when people get all overwrought about this sort of thing. i understand that illness = suffering at times, but i still firmly believe that our perspective plays a huge part in how we deal.
here be the link if you feel like donating:
http://www.tmsforacure.org/annualconferences/index.shtml#walks
it is, as always, appreciated. I feel sort of stupid posting this here, but in case any of you are not involved with the TMS or hadn't heard of the fundraiser, it's worth a shot at least.
-----------------
someone posted some information on masto and the diagnostic process, so i figured i'd share mine in case i hadn't.
long story short i've never been healthy. i was born way premature, jaundice, incubator, the whole 9. When i was little i'd get pneumonia at the drop of a hat. got mono twice (yet never chickenpox, or any variant of the varicella virus), allergies, asthma, whatever. i've always had problems with fatigue and bone pain...though my doctors didn't take me seriously because i -did- stuff. instead of bawling on the couch i worked full time, went to school at night, worked out...i pushed myself so hard to get through the fog that was in my head that it seemed like i was healthy.
in 2007 i started having severe abdominal pain. a CT scan showed some problems with my intestines (yay) but also some sort of "thing" in my spine. I think it was a hemangianoma. so i went to have an MRI of it. the mri was aborted after a few minutes due to my back getting hot (my back is tattooed). waiting for my partner to pay for the parking at the hospital, i was nearly dropped by this overwhelming sensation of bad. it felt like all the moisture had been sucked from my eyes and skin, and this disgusting metallic taste filled my mouth. my face went numb, my heartrate went through the roof and i nearly collapsed getting me to the ER. no one knew what was wrong with me at the time so it was chalked up to panic attacks. 3 days later i was vomiting blood, both the black gritty stuff from your stomach and the bright red stuff from your throat. still panic attacks. a month later i'd lost about 40lbs and was sickly thin, still panic attacks. modern medicine someone missed that it was anaphylaxis. good job Beth Israel, that's why I tell people to avoid you like the plague now.
my stomach started mottling and i went to see a dermatologist who noticed spots all over my back and arms. i'd had one biopsied a few years prior and the results were "high in histamine" though no follow up was prescribed. the new dermatologist nearly went through the roof when he saw this and apologized for his colleagues negligence. from there i had another biopsy, extensive bloodwork, and a 24 hour urine histamine. the biopsy showed high histamines, the blood showed high tryptase, and the urine showed high histamine. from there i was referred to a masto specialist who redid the tests and eventually everything was reconfirmed by a bone marrow biopsy.
so that's it in a nutshell.
-----
i've been really pissed off the past week. last sunday i shocked in a car (which i wrote about) and assumed it was an isolated incident. then this past friday, reacted again in a car (different car, same model. it's possible i've developed a sensitivity to german cars i suppose. ok not really). there were no similarities in my diet or behavior on either day as far as i can tell. i don't know if it was aftershocks, my kidney being a jerk again, a virus, or something else. all i know is that i'm not too keen to have had two episodes so close to one and other. i sent an email to two of my masto doctors asking for advice so we'll see if i have to up my meds. good times. today i spent about an hour in the courtyard of my building hooping, as i'm trying really hard not to let this get to me. give me a week shock free and i'll be set. aside from hating the shocks/episodes/whatever, i hate how the meds make me feel. i've been way hesitant to use epi (my experience thusfar has been using an epi inhaler, never the pens) but i hate how atarax makes me feel. really stupid and slow.
ANYWAY hopefully my welcoming september in by being all reactive is over with and now i can go back to things being ok. i'm trying way hard to be optimistic, especially as i have a ton of stuff to get done and don't feel like letting this get in the way if i can help it. because really, i get so annoyed when people get all overwrought about this sort of thing. i understand that illness = suffering at times, but i still firmly believe that our perspective plays a huge part in how we deal.
Monday, August 31, 2009
urgh
Well I guess the positive streak had to come to an end at some point.
Yesterday I was driving back up from Providence with a friend when I started feeling a little off in the car. My eyes felt incredibly dry, like all the moisture had been sapped from them, as did my skin. Then I got a sort burst of heat from my chest, that oh so awesome feeling of flushing..which of course was followed by the panicky feeling, tachycardia, the intense stomach cramping, and the feeling like i might suddenly pass out. I quickly gulped down some gastrocrom which seemed to help settle things somewhat, or at least made it that the flushing and waves of metallic tastes in my mouth were pretty minimal compared to shocking episodes in the past.
This was all made about 10,000 times more awesome by the fact that my friend had decided to chart the most circuitous path through Boston to get to my apartment possible. I swear we hit every single red light in existence between when I noticed symptoms popping up to when I finally got to my apartment. It sucked, but once I got into my apartment, I took some h1 and h2 blockers and felt better. The bone aches kicked in later (i don't know about the rest of you but my bones ache after an attack) but no more symptoms. What sucked more is that I have -no- idea at all what caused this attack. None. I've done things that would be considered risky in the past month, but nothing that I can recall yesterday.
I was supposed to have some dental work done today, but I bailed on it, since I didn't feel like having to subject myself to something that might trigger more attacks and I want to give my mast cells some more time to settle down.
I'm not going to let this get me down though. I had a good long run without having any massive symptomatic episodes, and this is just a blip, a bump in the proverbial road. It's just annoying to get smacked down so majorly and so seemingly out of nowhere.
Yesterday I was driving back up from Providence with a friend when I started feeling a little off in the car. My eyes felt incredibly dry, like all the moisture had been sapped from them, as did my skin. Then I got a sort burst of heat from my chest, that oh so awesome feeling of flushing..which of course was followed by the panicky feeling, tachycardia, the intense stomach cramping, and the feeling like i might suddenly pass out. I quickly gulped down some gastrocrom which seemed to help settle things somewhat, or at least made it that the flushing and waves of metallic tastes in my mouth were pretty minimal compared to shocking episodes in the past.
This was all made about 10,000 times more awesome by the fact that my friend had decided to chart the most circuitous path through Boston to get to my apartment possible. I swear we hit every single red light in existence between when I noticed symptoms popping up to when I finally got to my apartment. It sucked, but once I got into my apartment, I took some h1 and h2 blockers and felt better. The bone aches kicked in later (i don't know about the rest of you but my bones ache after an attack) but no more symptoms. What sucked more is that I have -no- idea at all what caused this attack. None. I've done things that would be considered risky in the past month, but nothing that I can recall yesterday.
I was supposed to have some dental work done today, but I bailed on it, since I didn't feel like having to subject myself to something that might trigger more attacks and I want to give my mast cells some more time to settle down.
I'm not going to let this get me down though. I had a good long run without having any massive symptomatic episodes, and this is just a blip, a bump in the proverbial road. It's just annoying to get smacked down so majorly and so seemingly out of nowhere.
Tuesday, August 25, 2009
on death
I always feel like I want to preface posts that sort of originated on one of the masto lists with the apology that I'm not trying to pick on people or their perspective, so much as I am taking this over here so as to not specifically engage them in the conversation.
More than a few people with masto have set up google alerts so that they get an email whenever mastocytosis makes the news.
This "story" (actually an obituary) popped up in the past week:
http://www.mysanantonio.com/obituaries/52466687.html
Long story short, it's the obituary of a gentleman who died at the age of 83 due to mastocytosis. It's an obituary, it's written for or by the family to announce his death. This lead to discussion on one of the masto lists I'm on about how frustrating it is that the "article" didn't get more in depth regarding how the mastocytosis killed him...sort of ignoring the point that it was an obituary and not an investigative report on mastocytosis. Now, we don't know how this gentleman died, and we never will. All we do know from reading this "article" is that he lived a full and varied life and died 9 years over the average life expectancy for males in America while having mastocytosis. We don't know how masto killed him, we don't know how long he'd been diagnosed for, but to me, I don't want to know. He lived a long life, longer than average, and I guess to me that is comforting. If this were the obituary of a 24 year old, I'd be more concerned and probably want more answers. but in the end, the point of an obituary is to dwell on someone's life, not their death.
I understand fully that there is a great likelihood that this disease may kill me, just as much as I understand that I may die of heart disease (it runs in my family) or cancer (as I am a smoker - though I'm working on quitting, I swear) or I may die from being hit by a car or something else. Point being, I'm going to die at some point. We all are. The most important thing that we can do as people (masto patients or not) is to learn the adaptive behaviors necessary to live as long (and fruitfully) as possible.
Case in point, I really like tattoos. There's no real information out there on whether or not it is safe for masto patients to get tattoos. The one I have, I got years before my diagnosis. As much as I'd love to add to my collection of body art, I am unsure of the risk. If the risk is death, obviously the risks outweigh the benefits 100fold. So I will not get any tattoos until that risk has been assessed (and not by me personally, but by physicians, hopefully at the TMS conference).
I also know, from anecdotal evidence and empirical evidence that certain things carry a great risk for masto patients (sulfa drugs, opiates, etc) so I avoid them. I don't need to read every story of every person who died to be stalwart in my avoidance of these drugs. When I have to schedule a medical test I run it by either the list or my doctors to see if anyone has experience. If I'm going to attempt to do something new (using a vibration plate for exercise, going hiking where I may get bitten by mosquitoes) I ask people if they have any experience.
I don't focus on the mortality stuff as much for a few reasons
1) This disease, in my experience, is incredibly subjective. I can do things some people cannot do, others can do things that I cannot do.
2) Chances are we may not know the full story. In the case of the man in the obituary, how long did he have masto? Did he know he had it when he died? Was he being treated? Was he being treated properly? Unless we call his grieving family, there is no way to know this stuff. I know one story of a masto patient who almost died during surgery because they suffered cardiac arrest due to the anesthesia. Scary right? It's scary until I include this piece of information: they were diagnosed -post- surgery -due- to their near fatal reaction to the anesthesia. They weren't following any surgical protocol, their anesthesiologist did not know they had a high risk patient on the table...all of these facts came to light after the procedure.
As a mastocytosis patient (and one who strives to be educated on their disease) I carry all my protocols with me (being Dr. Castell's emergency protocol and the TMS's anesthesia protocol) , carry epi pens, instruct everyone around me on how to administer epi, wear a medical alert bracelet, don't wear perfume, don't drink, don't typically eat out (food seems to be my biggest trigger) carry a pillbox with prednisone, atarax, benadryl, singular, zantac and ketotifen in it (it's a sexy pillbox) and just sort of do the best I can. I follow the low histamine diet because it works for me. I slowly add foods to my diet to see if I do or do not react to them.
I feel like it's a double edged sword. On one hand, knowledge is power. As a cohort of people with an orphan disease, much of the information we gather is going to be gleaned from our peers. There's not a lot of money going into research, there aren't alot of interested researchers. I totally get that. But I also feel like there is only so much information I want to fill my head with, especially when it becomes redundant (opiates are dangerous, anesthesia is dangerous) and incredibly depressing. As I said in my previous post, I don't want this disease, knowledge of this disease, to comprise most of my time. I want to learn to live with it, in spite of it.
I am not scared of dying any more than anyone else is. It's not a pleasant thought. But I feel like there is only so much I'm going to learn when researching the how/why of masto patient mortality.
The following comes from the TMS website, to me the bolded part is the most important part. The rest are just guidelines which are optimal to be followed. Obviously I can't be next to a hospital at all times, but I just take solace in the idea that epi buys me time I guess. Cause really, to me, what is the point of being alive if I'm miserable and constrained?
There is great variation from person to person in what is a trigger, and even within the same person. The triggers may change day-to-day - that is, heat may set off an attack on one day, but not on other days. The above list is not complete, but is meant to show the wide range of triggers that affect mast cells.
Some people with the indolent form of Mastocytosis, and/or people with Mast Cell Activation Disorder or Syndrome, have been told by some physicians that they can expect a nearly normal life expectancy, as long as they keep themselves as stable as possible by avoiding triggers and taking medications as prescribed. However, since it is not clear what is causing mast cell activation in patients with MCAD, this may not apply. Mast cell diseases are extremely unpredictable, and some people can very quickly develop acute symptoms that may require immediate medical attention. That is why it is advisable to stay within range of a medical facility, and to carry a written protocol from your mast cell disease specialist for emergency care.
More than a few people with masto have set up google alerts so that they get an email whenever mastocytosis makes the news.
This "story" (actually an obituary) popped up in the past week:
http://www.mysanantonio.com/obituaries/52466687.html
Long story short, it's the obituary of a gentleman who died at the age of 83 due to mastocytosis. It's an obituary, it's written for or by the family to announce his death. This lead to discussion on one of the masto lists I'm on about how frustrating it is that the "article" didn't get more in depth regarding how the mastocytosis killed him...sort of ignoring the point that it was an obituary and not an investigative report on mastocytosis. Now, we don't know how this gentleman died, and we never will. All we do know from reading this "article" is that he lived a full and varied life and died 9 years over the average life expectancy for males in America while having mastocytosis. We don't know how masto killed him, we don't know how long he'd been diagnosed for, but to me, I don't want to know. He lived a long life, longer than average, and I guess to me that is comforting. If this were the obituary of a 24 year old, I'd be more concerned and probably want more answers. but in the end, the point of an obituary is to dwell on someone's life, not their death.
I understand fully that there is a great likelihood that this disease may kill me, just as much as I understand that I may die of heart disease (it runs in my family) or cancer (as I am a smoker - though I'm working on quitting, I swear) or I may die from being hit by a car or something else. Point being, I'm going to die at some point. We all are. The most important thing that we can do as people (masto patients or not) is to learn the adaptive behaviors necessary to live as long (and fruitfully) as possible.
Case in point, I really like tattoos. There's no real information out there on whether or not it is safe for masto patients to get tattoos. The one I have, I got years before my diagnosis. As much as I'd love to add to my collection of body art, I am unsure of the risk. If the risk is death, obviously the risks outweigh the benefits 100fold. So I will not get any tattoos until that risk has been assessed (and not by me personally, but by physicians, hopefully at the TMS conference).
I also know, from anecdotal evidence and empirical evidence that certain things carry a great risk for masto patients (sulfa drugs, opiates, etc) so I avoid them. I don't need to read every story of every person who died to be stalwart in my avoidance of these drugs. When I have to schedule a medical test I run it by either the list or my doctors to see if anyone has experience. If I'm going to attempt to do something new (using a vibration plate for exercise, going hiking where I may get bitten by mosquitoes) I ask people if they have any experience.
I don't focus on the mortality stuff as much for a few reasons
1) This disease, in my experience, is incredibly subjective. I can do things some people cannot do, others can do things that I cannot do.
2) Chances are we may not know the full story. In the case of the man in the obituary, how long did he have masto? Did he know he had it when he died? Was he being treated? Was he being treated properly? Unless we call his grieving family, there is no way to know this stuff. I know one story of a masto patient who almost died during surgery because they suffered cardiac arrest due to the anesthesia. Scary right? It's scary until I include this piece of information: they were diagnosed -post- surgery -due- to their near fatal reaction to the anesthesia. They weren't following any surgical protocol, their anesthesiologist did not know they had a high risk patient on the table...all of these facts came to light after the procedure.
As a mastocytosis patient (and one who strives to be educated on their disease) I carry all my protocols with me (being Dr. Castell's emergency protocol and the TMS's anesthesia protocol) , carry epi pens, instruct everyone around me on how to administer epi, wear a medical alert bracelet, don't wear perfume, don't drink, don't typically eat out (food seems to be my biggest trigger) carry a pillbox with prednisone, atarax, benadryl, singular, zantac and ketotifen in it (it's a sexy pillbox) and just sort of do the best I can. I follow the low histamine diet because it works for me. I slowly add foods to my diet to see if I do or do not react to them.
I feel like it's a double edged sword. On one hand, knowledge is power. As a cohort of people with an orphan disease, much of the information we gather is going to be gleaned from our peers. There's not a lot of money going into research, there aren't alot of interested researchers. I totally get that. But I also feel like there is only so much information I want to fill my head with, especially when it becomes redundant (opiates are dangerous, anesthesia is dangerous) and incredibly depressing. As I said in my previous post, I don't want this disease, knowledge of this disease, to comprise most of my time. I want to learn to live with it, in spite of it.
I am not scared of dying any more than anyone else is. It's not a pleasant thought. But I feel like there is only so much I'm going to learn when researching the how/why of masto patient mortality.
The following comes from the TMS website, to me the bolded part is the most important part. The rest are just guidelines which are optimal to be followed. Obviously I can't be next to a hospital at all times, but I just take solace in the idea that epi buys me time I guess. Cause really, to me, what is the point of being alive if I'm miserable and constrained?
There is great variation from person to person in what is a trigger, and even within the same person. The triggers may change day-to-day - that is, heat may set off an attack on one day, but not on other days. The above list is not complete, but is meant to show the wide range of triggers that affect mast cells.
Some people with the indolent form of Mastocytosis, and/or people with Mast Cell Activation Disorder or Syndrome, have been told by some physicians that they can expect a nearly normal life expectancy, as long as they keep themselves as stable as possible by avoiding triggers and taking medications as prescribed. However, since it is not clear what is causing mast cell activation in patients with MCAD, this may not apply. Mast cell diseases are extremely unpredictable, and some people can very quickly develop acute symptoms that may require immediate medical attention. That is why it is advisable to stay within range of a medical facility, and to carry a written protocol from your mast cell disease specialist for emergency care.
Sunday, August 23, 2009
almost 2.5 years
I've been "sick" for almost 2 and a half years now. At least that's when I got my diagnosis.
The kidney issue really threw me for a loop, rather hard. I was in tremendous pain and was tremendously unstable. It was awful. I had the lithotripsy and things started to slooooowly turn around.
Come April I came to a rather abrupt conclusion. This was aided by the passing of a 5mm kidney stone, without any painkillers. To say it was painful would be an understatement. However I also realized that my options were to either a) go to the hospital to see what would happen. Most likely they'd want to give me painkillers which I wouldn't be able to tolerate, plus I'd be in pain in the hospital, which would be miserable. Or I could stay home and try to get through it while meditating and making sure I was still able to pass urine. I opted for the latter, breathing and sweating my way through around 12 hours of the most intense pain I'd ever had.
In the morning I passed the stone.
I felt so powerful afterwards and I realized that while the masto had kept me from something as comforting as morphine to dull the incredible pain of the stone, it also kept me from even seeking out the additional comfort. Why couldn't I view my masto the same way? Why does this disease have to be this huge hinderance for me?
Ever since then I've been throwing myself into activities. I've been exercising daily, working on jewelry like mad, signed up for a class at MassArt for the fall, started working with hoop dancing...it's all so beautiful and wonderful.
It's like the past two years were under some sort of shroud. I was quiet, landlocked, miserable, kept to myself, kept quiet...now I just want to expose my heart and stretch and move and be loud and be around people and it feels glorious.
I'm obviously still sticking to my meds and to the low histamine diet...but I feel like this disease became an addiction almost. Everything was so colored by it, so darkened by it...and now I'm starting to be free again.
The kidney issue really threw me for a loop, rather hard. I was in tremendous pain and was tremendously unstable. It was awful. I had the lithotripsy and things started to slooooowly turn around.
Come April I came to a rather abrupt conclusion. This was aided by the passing of a 5mm kidney stone, without any painkillers. To say it was painful would be an understatement. However I also realized that my options were to either a) go to the hospital to see what would happen. Most likely they'd want to give me painkillers which I wouldn't be able to tolerate, plus I'd be in pain in the hospital, which would be miserable. Or I could stay home and try to get through it while meditating and making sure I was still able to pass urine. I opted for the latter, breathing and sweating my way through around 12 hours of the most intense pain I'd ever had.
In the morning I passed the stone.
I felt so powerful afterwards and I realized that while the masto had kept me from something as comforting as morphine to dull the incredible pain of the stone, it also kept me from even seeking out the additional comfort. Why couldn't I view my masto the same way? Why does this disease have to be this huge hinderance for me?
Ever since then I've been throwing myself into activities. I've been exercising daily, working on jewelry like mad, signed up for a class at MassArt for the fall, started working with hoop dancing...it's all so beautiful and wonderful.
It's like the past two years were under some sort of shroud. I was quiet, landlocked, miserable, kept to myself, kept quiet...now I just want to expose my heart and stretch and move and be loud and be around people and it feels glorious.
I'm obviously still sticking to my meds and to the low histamine diet...but I feel like this disease became an addiction almost. Everything was so colored by it, so darkened by it...and now I'm starting to be free again.
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