So as I don't know if i mentioned it, but over a month ago, I was turned down for disability. This in and of itself is apparently entirely commonplace, as the system will do whatever it can to ensure not paying out to people, instead actively discouraging applicants by making it as tedious and difficult as possible. Once you receive your rejection you have 60 days during which you can file for a review. If that gets turned down (which it typically does) you then have to go in for a hearing, which is obviously incredibly upsetting, stressful, etc. I don't want disability to be a long term solution for me, but right now I'm not stable enough for a job, and honestly if i were to interview anywhere, explaining the 12 month gap in employment with "well i have this disease....." would probably eliminate me from the candidate pool immediately, what with the current economy being as it is.
I decided to skip trying to get a review without having a lawyer because I really wanted this process over with. A friend of mine spoke to his father (who is lawyer) and his father recommended a friend of his who *used* to do disability law. We met with said lawyer within days of receiving the rejection letter. He told us that he no longer did disability law since there was no money in it, however as a favor to said friend' dad, he would take my case. He then told us to do all the footwork for him (getting medical files, writing out histories, getting consent forms) so that it would minimize the amount we had to pay him since it would minimize the amount of work he would have to do. He also asked us to compile and tab my medical history to show which doctor covered which specialty and find out which doctors would be willing to write letters explaining why ISM is a systemic and generally devastating condition. He asked me to write out a 10 year comprehensive history of my medical health.
We jumped through all his hoops and fulfilled all his obligations immediately. We got all -15- of my specialists willing and wanting to write letters explaining why and how I was disabled. He told us that he would contact that doctors himself so as to coach them in how to phrase things so that they would be more understandable to the medial board at social security, that they shouldn't do anything until they heard from him. He told me to not start working on filling out the application for a reconsideration until I heard from him.
Then he fell off the face of the planet, saying that he would handle things and that we shouldn't contact him too much because he didn't want to feel like we were micromanaging him or the case.
I ended up in the hospital again last week (i had a burst ovarian cyst, the pain of which caused my masto symptoms to flair up like crazy), which of course resulted in my having to see a bunch of my doctors in the wake of my stay at B&W, and I asked them if they had heard from my lawyer, as the 60day deadline was bearing down on us quickly. As it turns out, he hadn't contacted any of them. We sent him an email asking him what was up, if our expectations were not the same as his plan of action in dealing with the case, etc.
This morning, we get an email from him stating that he's just too darn busy to handle our case (or more likely there wasn't enough money in it for him), and was so kind as to give us the referral number for the Mass Bar Hotline, something Social Security had already done when they rejected my claim. He also offered to overnight all the medical work that I had done to whatever lawyer I ended up finding, free of charge.
Now, this son of a bitch obviously knew he had a heavy caseload when he took on my appeal. He knew it when he kept giving Ethan and I more forms to fill out, more forms to pass along to doctors and hospitals, he knew it when he refused to return our 2 phone calls over the past three weeks (as more and more doctors were saying that they hadn't heard from him, we left a couple calls seeing if there was anything more we should be doing, making sure he had gotten all the proper documentation from us. totally cordial messages just wanting to know what was up since the deadline for my appeal was steadily approaching).
Now, with a little over 20 days to go, I need to find a new lawyer, fill out 15 new patient confidentiality forms, and get 15 doctors with incredibly busy schedule (as they are all top tier specialists in their fields, their time is incredibly limited) to write letters, otherwise I will have to start the entire process all over again, which takes months.
To say I am livid is an understatement. Not only did he completely fuck up my appeal process, he also made the colleague of his that referred us to him look terrible in the process, something he has to be aware of.
So now I don't know what to do. I'm going to call a few lawyer referral hotlines, and I also contacted some former coworkers who are lawyers (one was a partner in a lawfirm) to see if they have any recommendations.
This entire situation is just utterly disgusting and has just left me feeling completely and utterly demoralized. -15- doctors say I'm disabled, I've been paying into the system for as many years, I've got medical bills that are insane, and spent the past 40 days under the impression that I had a lawyer who was helping me navigate this whole system. If he'd contacted us weeks ago with this news it would've been upsetting, but this is just beyond reproach.
I have a phone interview with a law firm later today (they helped someone out on one of the larger masto patient lists) so hopefully that will turn out well. It just sucks that a)i have to go through this at all and b) my lawyer turned out to be a money hungry prick in the end.
Tuesday, May 13, 2008
Sunday, April 6, 2008
i make stuff
I'm not currently working, as I haven't been able to get my masto in check enough where I'd be able to hold down a full time job. Plus with the economy as it currently stands, having to explain the 10 month gap in my employment pretty much would kill any job interview in a second.
In my copious free time, I have been making jewelry, which I would love for y'all to go look at.
My dad and I are going to co-run this shop, with him making some awesome woodcraft stuff, and me making some (hopefully) awesome jewelry.
In my copious free time, I have been making jewelry, which I would love for y'all to go look at.
My dad and I are going to co-run this shop, with him making some awesome woodcraft stuff, and me making some (hopefully) awesome jewelry.
Wednesday, March 19, 2008
If you're reading this blog you've probably read this already too
NEW YORK (Reuters Health) Mar 07 - Among children with mastocytosis, only those with extensive skin disease run the risk of severe anaphylaxis; all adult patients, however, are at risk, according to a report by German researchers in the February issue of Allergy.
In the first study to focus on the cumulative incidence of anaphylaxis among mastocytosis patients, Dr. Knut Brockow and colleagues attempted to identify risk factors in 120 consecutive patients at the mastocytosis outpatient clinic at the Technical University of Munich.
The researchers found that in children, the extent and density of skin lesions was a risk factor for anaphylaxis (p < 0.01 for each). In children, the severity of skin lesions was also correlated with increased serum tryptase levels (p < 0.03). No children with isolated mastocytomas developed anaphylaxis.
Among adults, in contrast, those with systemic disease, particularly those without additional skin involvement, had a higher incidence of anaphylaxis (p < 0.02). Some adults with cutaneous mastocytosis did, however, develop anaphylaxis. Overall, serum tryptase was higher in those with anaphylaxis.
The major triggers of anaphylaxis in this group of patients (where known) were hymenoptera stings, foods and medications; this did not differ from factors triggering anaphylaxis among patients without mastocytosis. Twenty-six percent of reactions in adults appeared to occur only after a combination of triggers, including alcohol, exercise and aspirin.
Anaphylaxis was severe in this study cohort and resulted in unconsciousness in 19 of the 36 adult patients who experienced it.
Because adult mastocytosis patients are at increased risk of anaphylaxis and there is no common predictor for it, Dr. Brockow told Reuters Health, all of them should receive an epinephrine autoinjector as a precaution.
Among children, however, "only those with severe skin involvement and high tryptase levels" need to have an autoinjector.
Allergy 2008;63:226-232.
----------------------------------------------
I carry epi with me everywhere, both in an inhaled version as well as two pens. my husband and best friend have been trained in how to administer the pen and both are cpr certified too. My best friend used to work at Boston's Museum of Science, specifically with kids, which is why he knows the epi protocol and cpr...my husband obviously learned it after i got sick, or became symptomatic or whatever you want to call it.
Not much new to report. My sleep schedule has been terrible, I wake up every few hours, and I can't figure out why. My mast cell dr thinks it could be histamines, but I'm not convinced. I'm going to see my neurologist soon, so we can discuss that. I'm also going to do a sleep study, but first we need to make sure the adhesive doesn't make me react
In the first study to focus on the cumulative incidence of anaphylaxis among mastocytosis patients, Dr. Knut Brockow and colleagues attempted to identify risk factors in 120 consecutive patients at the mastocytosis outpatient clinic at the Technical University of Munich.
The researchers found that in children, the extent and density of skin lesions was a risk factor for anaphylaxis (p < 0.01 for each). In children, the severity of skin lesions was also correlated with increased serum tryptase levels (p < 0.03). No children with isolated mastocytomas developed anaphylaxis.
Among adults, in contrast, those with systemic disease, particularly those without additional skin involvement, had a higher incidence of anaphylaxis (p < 0.02). Some adults with cutaneous mastocytosis did, however, develop anaphylaxis. Overall, serum tryptase was higher in those with anaphylaxis.
The major triggers of anaphylaxis in this group of patients (where known) were hymenoptera stings, foods and medications; this did not differ from factors triggering anaphylaxis among patients without mastocytosis. Twenty-six percent of reactions in adults appeared to occur only after a combination of triggers, including alcohol, exercise and aspirin.
Anaphylaxis was severe in this study cohort and resulted in unconsciousness in 19 of the 36 adult patients who experienced it.
Because adult mastocytosis patients are at increased risk of anaphylaxis and there is no common predictor for it, Dr. Brockow told Reuters Health, all of them should receive an epinephrine autoinjector as a precaution.
Among children, however, "only those with severe skin involvement and high tryptase levels" need to have an autoinjector.
Allergy 2008;63:226-232.
----------------------------------------------
I carry epi with me everywhere, both in an inhaled version as well as two pens. my husband and best friend have been trained in how to administer the pen and both are cpr certified too. My best friend used to work at Boston's Museum of Science, specifically with kids, which is why he knows the epi protocol and cpr...my husband obviously learned it after i got sick, or became symptomatic or whatever you want to call it.
Not much new to report. My sleep schedule has been terrible, I wake up every few hours, and I can't figure out why. My mast cell dr thinks it could be histamines, but I'm not convinced. I'm going to see my neurologist soon, so we can discuss that. I'm also going to do a sleep study, but first we need to make sure the adhesive doesn't make me react
Monday, March 10, 2008
ugh
some days i swear i am just drying up from the inside out due to all my medications. between this and the soul crushing fatigue, i'm just at a loss at how the next 30-40 years of my life are going to go. every once in a while i think it is ok to be really depressed about this.
Wednesday, February 27, 2008
Kim
I don't know if you are on the Masto Med list but I saw this post today which I thought might interest you:
For your information....
I am told today that Dr. O'Lansky is now in practice in the Cleveland Clinic. She was in practice in Oklahoma. Spoke to the TMS Conference in Oklahoma and also was seen by several members of the Oklahoma Support Group.
For your information....
I am told today that Dr. O'Lansky is now in practice in the Cleveland Clinic. She was in practice in Oklahoma. Spoke to the TMS Conference in Oklahoma and also was seen by several members of the Oklahoma Support Group.
Thursday, February 21, 2008
humilty
I have another journal that I write in, which is public, that has more trivial stuff, like my involvement against a well known religious group i am none too fond of (it has a few high profile celebrities in it, there's your obvious hint), the beginnings of my jewelry making, politics, random social stuff that I choose to share in a public forum.
I've slowly been trying to redirect health stuff here, as opposed to there, because I don't want to be known as the sick friend. This is an absolute impossibility, as I nearly went into shock at a friend's party (everything but the throat swelling. turned out she'd had her carpets cleaned, so chances are there was something in the cleanser that didn't agree with me) which caused a bit of a scene, and had a similar experience at some stupid ren faire that I went to, where again, hives, sweating, tachycardia, faintness, flushing...I had my epi pens out and ready (i was also in the company of either my partner or my best friend, both of whom carry my medical id card on them as well as my emergency protocol as dictated by my doctor and who are both trained in epi pen administration and cpr certified). The point being, while my friends love me (i believe), they also know I can't really do typical things like go out for drinks or go out to eat without it being a big production of planning ahead, reading menus, figuring out where the closest hospital is and what the fastest route is. It's difficult and annoying and scary for me, but almost moreso for them because suddenly "hanging out with bridget time" becomes "potential liability time"
I am sometimes brave and sometimes overly cautious. A few weeks ago I took part in a protest against something I'm not going to mention here (for safety reasons, it's a cultish organization known to seek out and harass people who speak against it) and stood out in the snow for 4 hours, brave and proud. It is an organization that once tried to convince a diabetic friend of mine that if they joined, and spent a lot of money, their diabetes would go away. They are an organization that preys on people like me. Scared, sick, possibly misinformed, possibly lonely...and for that reason and many others, I dislike them strongly.
As for my story...
Last year, last march probably, I went into work and told my manager I'd be leaving in May. We had big plans, you know. We were going to go to Costa Rica, come back for a few days, decompress, pack up our belongings, and go to England for a few months like we did back in 2004. My partner was going to work with the group over there and while perfecting the role of a faux-british housewife, I was going to study for the GRE.
Things went completely awry. Later in the month I got diagnosed with diverticulitis, and all my doctors were shocked a 29 year old with an incredibly healthy diet would have it so badly. I reacted pretty harshly to my antibiotics and painkillers, but just assumed they were strong drugs and that my reaction wasn't that out of sorts (flushing, itching, tachycardia). During the CT-Scan that showed the diverticulitis, the doctors noticed a hemangianoma in my back and my primarily care physician decided to have it re-checked with an MRI. So in April I had an MRI (without contrast) on my back and for what ever reason, I had my first big mast cell degranulation episode, something that happened repeatedly for a few weeks until i started experiencing some weird stomach mottling that made me make an appointment to see a dermatologist. The whole experience was terrible...doctors were convinced I'd developed an anxiety disorder, I thought I was losing my mind, everything was just wrong. Then suddenly through a set of random coincidences, I had an answer, or a potential one. I was referred to one of the top mast cell doctors in the country, and the diagnosis was confirmed: Indolent Systemic Mastocytosis with Urticaria Pigmentosa. Strangely enough, when I had my bone density scan done on my spine, the hemanianoma was gone, which led my doctor to surmise it may have been a cluster of mast cells.
Regardless of minutia, suddenly my world got turned upside down. Lots of doctor appointments, lots of trial and error with medications, lots of annoying stuff. It was really amazing how one day I felt really good (well good for me since even before this I rarely felt awesome as my spotty attendance record at work and social events can attest to) and the next I "sick". At first I kinda ignored it, I didn't tell anyone what was going on until I left my job, for some reason I liked leaving everyone under the impression (at work at least) that I was going off to do great things* instead of going off to try to be patched up.
It's been quite a few months later, almost a year, an anniversary I am dreading, and things are better, but they aren't great. Earlier on I was measuring days by doses of medication, now I'm measuring them by accomplishments that once seemed pathetically small, but now seem huge. I have days where I feel good and I have days where I feel like I want to just stop being because it feels like such a trial. (that sounds so fucking whingey and dramatic, urgh) but the pain and the fatigue and the fear of shocking are so strong, and the possibility this will be my entire life, that this may get worse, is just so daunting, and so dark sometimes.
The past few days, for whatever reason, hammered something home, which is that for the time being, I'm not better, my medication takes a ton out of me, and there's no humanly possible way I can work. And I loathe that. I'd love to have a job more than anything, but my good and bad days are so sporadic and dramatic it would be impossible. I have days where I wake up at 7am all sunshine and WHEEEE and days where I can't get out of bed. I had Ethan take a picture of my back the other day so I could see what it looked like when irritated. I know what my arms and fingers look like, but not my back.
Looking at it, talking to the doctors at length about my story, realizing how high my histamine and tryptase levels still are, how low my energy is, how far I still seem to have to go, how I pretty much have a doctor appointment every day for the next few months, working is really not an option.
So recently I started the wheels in motion to apply for disability. It's a huge tedious process and one I wanted to avoid as long as possible. I have to get all my medical records together (I have a lot of them since I generally have to bring specialist A's report to specialist B who wants specialist R to see it too), but my god. I had to write out every diagnosis I have that could influence my ability as a valuable employee, every doctor I see regularly (over 15), what medications I take, how many ER visits I've had, how tall i am, how much i weigh, what every job I've had over the past 15 years has paid, what my work has entailed, how educated I am, if i ever worked in coal mines or for the rail road, what sort of skill set I have, am I computer literate, what my pension is, all this probing random personal information. Obviously they need to know it. It almost seems like they are asking "Did you really make an effort when you did have a job/Do you have an aversion to working hard". Again, understandable but insulting. I hate not working, I hate eating away at my savings, I hate hoping every day that my property will sell so I wont have to be a leech, I hate selling stuff on ebay so I have my own money...it's all so frustrating. I knew someone once who really seemed attached to the idea of being a "disabled housewife" and would tell people right off the bat that was who she was (even though, to be a catty fuck for a moment, technically she isn't as she hasn't been granted disability. i think that's a glaring technicality, but maybe i'm being an jerk), so it was almost like a title or an essence...and man, I cannot understand it at all. I don't want to be disabled or differently abled or sickly and i don't want to be a housewife (unless we suddenly had a litter of kids or something, then i'd probably want to stay home)
I'm also going to need to get a bone marrow biopsy, probably sooner than we'd anticipated, or sooner than we'd have liked to get it done, since apparently the folks at social security are bastards if you don't have one done. This is really up for debate, and I'm going to see how/why/if my initial claim is rejected, and on what grounds before I make a concrete decision on that. I fit the criteria for systemic mastocytosis disease (do not even get me started on the fucking ridiculous fight I had with someone on a major masto list about that this week. some woman all but invalidated everything i'd been through, including my doctor's diagnosis, because as far as she was concerned I didn't live up to her misinterpretation of the WHO criteria for diagnosis. so fucking insulting) I have a friend who has a lawyer for a parent, and has offered said parent's advice or counsel to me if needed. i hope it doesn't go that far.
It's funny, you know, there is this voice in my head screaming I AM NOT SICK, DON'T BE SICK, STOP BEING SICK, DON'T TREAT ME LIKE I AM whenever I deal with every overly compassionate doctor or lab tech, but now I have to start saying the opposite outloud to the government, and that is really tough. it's a label I don't want.
*I will still do great things, or at least good things, my timeline just got shifted around a bit. But there will still be England and GREs and all that. I swear.
I've slowly been trying to redirect health stuff here, as opposed to there, because I don't want to be known as the sick friend. This is an absolute impossibility, as I nearly went into shock at a friend's party (everything but the throat swelling. turned out she'd had her carpets cleaned, so chances are there was something in the cleanser that didn't agree with me) which caused a bit of a scene, and had a similar experience at some stupid ren faire that I went to, where again, hives, sweating, tachycardia, faintness, flushing...I had my epi pens out and ready (i was also in the company of either my partner or my best friend, both of whom carry my medical id card on them as well as my emergency protocol as dictated by my doctor and who are both trained in epi pen administration and cpr certified). The point being, while my friends love me (i believe), they also know I can't really do typical things like go out for drinks or go out to eat without it being a big production of planning ahead, reading menus, figuring out where the closest hospital is and what the fastest route is. It's difficult and annoying and scary for me, but almost moreso for them because suddenly "hanging out with bridget time" becomes "potential liability time"
I am sometimes brave and sometimes overly cautious. A few weeks ago I took part in a protest against something I'm not going to mention here (for safety reasons, it's a cultish organization known to seek out and harass people who speak against it) and stood out in the snow for 4 hours, brave and proud. It is an organization that once tried to convince a diabetic friend of mine that if they joined, and spent a lot of money, their diabetes would go away. They are an organization that preys on people like me. Scared, sick, possibly misinformed, possibly lonely...and for that reason and many others, I dislike them strongly.
As for my story...
Last year, last march probably, I went into work and told my manager I'd be leaving in May. We had big plans, you know. We were going to go to Costa Rica, come back for a few days, decompress, pack up our belongings, and go to England for a few months like we did back in 2004. My partner was going to work with the group over there and while perfecting the role of a faux-british housewife, I was going to study for the GRE.
Things went completely awry. Later in the month I got diagnosed with diverticulitis, and all my doctors were shocked a 29 year old with an incredibly healthy diet would have it so badly. I reacted pretty harshly to my antibiotics and painkillers, but just assumed they were strong drugs and that my reaction wasn't that out of sorts (flushing, itching, tachycardia). During the CT-Scan that showed the diverticulitis, the doctors noticed a hemangianoma in my back and my primarily care physician decided to have it re-checked with an MRI. So in April I had an MRI (without contrast) on my back and for what ever reason, I had my first big mast cell degranulation episode, something that happened repeatedly for a few weeks until i started experiencing some weird stomach mottling that made me make an appointment to see a dermatologist. The whole experience was terrible...doctors were convinced I'd developed an anxiety disorder, I thought I was losing my mind, everything was just wrong. Then suddenly through a set of random coincidences, I had an answer, or a potential one. I was referred to one of the top mast cell doctors in the country, and the diagnosis was confirmed: Indolent Systemic Mastocytosis with Urticaria Pigmentosa. Strangely enough, when I had my bone density scan done on my spine, the hemanianoma was gone, which led my doctor to surmise it may have been a cluster of mast cells.
Regardless of minutia, suddenly my world got turned upside down. Lots of doctor appointments, lots of trial and error with medications, lots of annoying stuff. It was really amazing how one day I felt really good (well good for me since even before this I rarely felt awesome as my spotty attendance record at work and social events can attest to) and the next I "sick". At first I kinda ignored it, I didn't tell anyone what was going on until I left my job, for some reason I liked leaving everyone under the impression (at work at least) that I was going off to do great things* instead of going off to try to be patched up.
It's been quite a few months later, almost a year, an anniversary I am dreading, and things are better, but they aren't great. Earlier on I was measuring days by doses of medication, now I'm measuring them by accomplishments that once seemed pathetically small, but now seem huge. I have days where I feel good and I have days where I feel like I want to just stop being because it feels like such a trial. (that sounds so fucking whingey and dramatic, urgh) but the pain and the fatigue and the fear of shocking are so strong, and the possibility this will be my entire life, that this may get worse, is just so daunting, and so dark sometimes.
The past few days, for whatever reason, hammered something home, which is that for the time being, I'm not better, my medication takes a ton out of me, and there's no humanly possible way I can work. And I loathe that. I'd love to have a job more than anything, but my good and bad days are so sporadic and dramatic it would be impossible. I have days where I wake up at 7am all sunshine and WHEEEE and days where I can't get out of bed. I had Ethan take a picture of my back the other day so I could see what it looked like when irritated. I know what my arms and fingers look like, but not my back.
Looking at it, talking to the doctors at length about my story, realizing how high my histamine and tryptase levels still are, how low my energy is, how far I still seem to have to go, how I pretty much have a doctor appointment every day for the next few months, working is really not an option.
So recently I started the wheels in motion to apply for disability. It's a huge tedious process and one I wanted to avoid as long as possible. I have to get all my medical records together (I have a lot of them since I generally have to bring specialist A's report to specialist B who wants specialist R to see it too), but my god. I had to write out every diagnosis I have that could influence my ability as a valuable employee, every doctor I see regularly (over 15), what medications I take, how many ER visits I've had, how tall i am, how much i weigh, what every job I've had over the past 15 years has paid, what my work has entailed, how educated I am, if i ever worked in coal mines or for the rail road, what sort of skill set I have, am I computer literate, what my pension is, all this probing random personal information. Obviously they need to know it. It almost seems like they are asking "Did you really make an effort when you did have a job/Do you have an aversion to working hard". Again, understandable but insulting. I hate not working, I hate eating away at my savings, I hate hoping every day that my property will sell so I wont have to be a leech, I hate selling stuff on ebay so I have my own money...it's all so frustrating. I knew someone once who really seemed attached to the idea of being a "disabled housewife" and would tell people right off the bat that was who she was (even though, to be a catty fuck for a moment, technically she isn't as she hasn't been granted disability. i think that's a glaring technicality, but maybe i'm being an jerk), so it was almost like a title or an essence...and man, I cannot understand it at all. I don't want to be disabled or differently abled or sickly and i don't want to be a housewife (unless we suddenly had a litter of kids or something, then i'd probably want to stay home)
I'm also going to need to get a bone marrow biopsy, probably sooner than we'd anticipated, or sooner than we'd have liked to get it done, since apparently the folks at social security are bastards if you don't have one done. This is really up for debate, and I'm going to see how/why/if my initial claim is rejected, and on what grounds before I make a concrete decision on that. I fit the criteria for systemic mastocytosis disease (do not even get me started on the fucking ridiculous fight I had with someone on a major masto list about that this week. some woman all but invalidated everything i'd been through, including my doctor's diagnosis, because as far as she was concerned I didn't live up to her misinterpretation of the WHO criteria for diagnosis. so fucking insulting) I have a friend who has a lawyer for a parent, and has offered said parent's advice or counsel to me if needed. i hope it doesn't go that far.
It's funny, you know, there is this voice in my head screaming I AM NOT SICK, DON'T BE SICK, STOP BEING SICK, DON'T TREAT ME LIKE I AM whenever I deal with every overly compassionate doctor or lab tech, but now I have to start saying the opposite outloud to the government, and that is really tough. it's a label I don't want.
*I will still do great things, or at least good things, my timeline just got shifted around a bit. But there will still be England and GREs and all that. I swear.
Tuesday, February 12, 2008
My spots
Since I've been bitching about that article and the absolutely ridiculous statement that urticaria pigmentosa may turn into cancer, I figured I may as well write about my own a little urticaria pigmentosas.
Today I went to see my doctor, and they had an intern in, as well as a fellow. They were both very excited to see an ISM patient, as even though my doctor sees a lot, we all have different stories, different reactions, different presentations. So we went over my medical history and I stressed to both of them how painful and grueling the whole process of getting diagnosed was, and what a fluke it was for the doctor who picked it up. I stressed that patients who suddenly come down with massive anxiety disorders with no exogenous stimulus should be looked at more closely.
I never wrote about what happened to me the week in which I was diagnosed because it is incredibly painful to relive, but it included being told I had a severe anxiety disorder, temporal lobe epilepsy, a noro-virus coupled with anxiety disorder and temporal lobe epilepsy, some other form of epilepsy, ms, potential hypochondria before finally it was decided I needed to be locked in a psych evaluation room for 12 hours under sedation because they could not keep my tachycardia under control and were convinced it was anxiety even though I was vomiting blood (which would later be attributed to the stomach damage I incurred from all the histamines that were flooding my body). There's a lot more to it, but I really don't want to get into details. It was horrible, honestly one of the worst experiences of my life. I am sure that many of you reading this who have mastocytosis can relate. The baffled doctors, the unclear medical tests, being told it is psychological when blood test after blood test comes out skewed. It's a story that many of us can tell sadly.
A few days later I noticed really odd mottling across the skin of my stomach so I made an appointment to see a dermatologist. While examining the mottled skin on my stomach, he noted that I had a lot of freckles on my back and torso. I told him that yeah, they'd been popping up over the past few years, that prior to that my skin was relatively flawless, but I'd had one biopsied to make sure it wasn't cancer, and it wasn't, and that i wasn't thrilled with how they looked cosmetically but I really didn't care. He scratched one, waited a moment, and then told me about mastocytosis. The only reason he was so well versed in it is because he works shifts at Children's Hospital, and this disease is more common in children. He immediately drew a ton of blood, did a 24 hour urine histamine, referred me to my specialist, and the rest, as they say, is history.
But, I figure I may as well show you what I've been talking about. This is a photo of my back. None of the freckles are freckles. They are all clusters of mast cells that show up in a cutaneous manifestation. One of the ones on the right had been intentionally irritated so as to show Darier's sign. In other words, it released a ton of histamines into my system. However, since I'm on so many meds, my reaction is pretty localized. I won't lie, I feel like hell after they do it, but I'm glad to suffer it to teach another doctor about a disease so infrequently seen.
So this is it, the real visible physical manifestation that I am not well. It's honestly hard for me to post this, because while I know it's not a real deformity, and I'm currently getting off pretty easy compared to many people with mastocytosis or urticaria pigmentosa, it's hard for me to look at, or show off, because it looks so unlike me. A few years ago the skin on my body was spotless, and now i'm turning into a leopard. but i guess that's a pretty good animal for the first thing to pop into mind, so maybe i can pretend i have that strength as well.
(for the record, I adjusted the contrast on this a bit because the room was very bright at the photo came out a bit washed out. This is also a few minutes after the Darier's sign had been activated and was starting to calm down)
Today I went to see my doctor, and they had an intern in, as well as a fellow. They were both very excited to see an ISM patient, as even though my doctor sees a lot, we all have different stories, different reactions, different presentations. So we went over my medical history and I stressed to both of them how painful and grueling the whole process of getting diagnosed was, and what a fluke it was for the doctor who picked it up. I stressed that patients who suddenly come down with massive anxiety disorders with no exogenous stimulus should be looked at more closely.
I never wrote about what happened to me the week in which I was diagnosed because it is incredibly painful to relive, but it included being told I had a severe anxiety disorder, temporal lobe epilepsy, a noro-virus coupled with anxiety disorder and temporal lobe epilepsy, some other form of epilepsy, ms, potential hypochondria before finally it was decided I needed to be locked in a psych evaluation room for 12 hours under sedation because they could not keep my tachycardia under control and were convinced it was anxiety even though I was vomiting blood (which would later be attributed to the stomach damage I incurred from all the histamines that were flooding my body). There's a lot more to it, but I really don't want to get into details. It was horrible, honestly one of the worst experiences of my life. I am sure that many of you reading this who have mastocytosis can relate. The baffled doctors, the unclear medical tests, being told it is psychological when blood test after blood test comes out skewed. It's a story that many of us can tell sadly.
A few days later I noticed really odd mottling across the skin of my stomach so I made an appointment to see a dermatologist. While examining the mottled skin on my stomach, he noted that I had a lot of freckles on my back and torso. I told him that yeah, they'd been popping up over the past few years, that prior to that my skin was relatively flawless, but I'd had one biopsied to make sure it wasn't cancer, and it wasn't, and that i wasn't thrilled with how they looked cosmetically but I really didn't care. He scratched one, waited a moment, and then told me about mastocytosis. The only reason he was so well versed in it is because he works shifts at Children's Hospital, and this disease is more common in children. He immediately drew a ton of blood, did a 24 hour urine histamine, referred me to my specialist, and the rest, as they say, is history.
But, I figure I may as well show you what I've been talking about. This is a photo of my back. None of the freckles are freckles. They are all clusters of mast cells that show up in a cutaneous manifestation. One of the ones on the right had been intentionally irritated so as to show Darier's sign. In other words, it released a ton of histamines into my system. However, since I'm on so many meds, my reaction is pretty localized. I won't lie, I feel like hell after they do it, but I'm glad to suffer it to teach another doctor about a disease so infrequently seen.
So this is it, the real visible physical manifestation that I am not well. It's honestly hard for me to post this, because while I know it's not a real deformity, and I'm currently getting off pretty easy compared to many people with mastocytosis or urticaria pigmentosa, it's hard for me to look at, or show off, because it looks so unlike me. A few years ago the skin on my body was spotless, and now i'm turning into a leopard. but i guess that's a pretty good animal for the first thing to pop into mind, so maybe i can pretend i have that strength as well.
(for the record, I adjusted the contrast on this a bit because the room was very bright at the photo came out a bit washed out. This is also a few minutes after the Darier's sign had been activated and was starting to calm down)
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