You'd think by now it'd be easier
I saw the allergist at Froedtert today which was good timing as I landed myself in the ER on Monday from eating watermelon. That makes total sense, right? In any case it was probably one of the worst appointments I've had or at least definitely in the top five.
Let me preface this with information about mast cell disorders. Mast cells are involved with inflammation and allergic reactions in your body. When you have a mast cell disorder it means they are overreactive or there are too many of them or that they leak so they're constantly giving you a histamine response which eventually builds up and you go anaphylactic. Anaphylaxis is any kind of sudden onset of allergic reactions. It does not mean death and it does not mean your throat swells shut. It can be but that's not definitive. MCAD or Idiopathic Anaphylaxis cannot be diagnosed by a mere blood test. Mastocytosis however can be just because it's systemic and sort of involves all of your body and bent on destroying it more or less. MCAD is like Fibro, it's the last option left after you've exhausted every other possibility.
My labs came back clean, which is not uncommon. But unfortunately the doctor didn't get it and couldn't tell me why I get sick from smelling burned food, eating watermelon, or olive oil. So instead of telling me she couldn't help and I should seek a specialist she instead told me to GO TO A THERAPIST. Because clearly allergic anaphylactic reactions are caused by neurological or mental disorders. I am flabbergasted by the treatment and by the cruelty. Doctors cannot admit they just don't know so instead blame the patient. I've heard it enough times, you'd think I'd be able to handle that line by now but guess what, I can't. Not now. Not after the hell I've been through.
She then continued to push the POTS problem which also makes no sense. I swear I don't think she read up on POTS or MCAD or anything because her logic was beyond illogical, Spock would have bitch slapped her. POTS doesn't create allergic reactions or the inability to eat. But MCAD involves POTS, causes POTS reactions, even has the same symptoms. POTS and MCAD are linked--I even gave her the AMA paper to prove it but I guess factual evidence means nothing to her.
I told her if this isn't allergies then why do I feel better with extra antihistamines? Why does the throat swelling go away then? She told me that's not conclusive evidence. OK well if antihistamines aren't used to treat allergic reactions than tell me why the ER prescribes the same exact dosage I take when you come in for an anaphylactic reaction? I mean fuck, if they don't do anything to help an allergic reaction....
It's pretty obvious IA is the culprit...Idiopathic Anaphylaxis means anaphylaxis with no real cause. I shouldn't be sick from everything. And hey guess what when this all started, I WASN'T STRESSED. I was in a decent place in my life in July. My mom was cancer free, my job was fine, I wasn't ill, I didn't have the POTS thing going on. None of the fucking food shit happened until later and even then I have remained INCREDIBLY CALM. I have only twice feared for my life since. I'm doing a magnificent job coping so how dare you blame me because you can't figure it out.
I'm so angry and disappointed and sad. So sad that I can't even bring myself to cry. All I want to do is hole up in my room and take my mind off of this forever.
I can't eat anything still. You guys I'm eating pancakes, steak, and potatoes. That's it. FOR TWO FUCKING MONTHS THE SAME MEALS. And NOW I think milk is causing a problem so I haven't been able to eat those three things. Olive oil caused a problem too. I don't know what to do and I'm just tired of being hungry and hurting.
We brought this up that now I can't eat anything at all and she more or less said, "Well you're getting your caloric intake and protein and carbs, you're fine." WHAT? EXCUSE ME? YOU NEED VITAMINS YOU IDIOT. A healthy diet is essential for a healthy body much less for someone with Fibro and POTS and any other autoimmune disease. Little changes like this can cause devastating results in someone like me. What she more or less said was, "Well, you're fat, so I don't see why you not eating is a problem." I'm still losing weight in an unhealthy way and though I'm glad to see it go it's not right. If I were a normal sized person they would take this really seriously.
OH oh and even better she tells me that the fact that I end up in the ER all the time means they're going to think that I'm nuts too btw. Because clearly you seeking help FOR YOUR FUCKING THROAT SWELLING means you're nuts.
I'm so tired of struggling you guys. I'm pretty fucking good at picking myself up and trudging along but I think this time I might be licked. I don't think I can live like this much longer. Why is it so fucking hard to get help? And who was the idiot who made us believe that someone was actually out there to help us in the first place?
Let me preface this with information about mast cell disorders. Mast cells are involved with inflammation and allergic reactions in your body. When you have a mast cell disorder it means they are overreactive or there are too many of them or that they leak so they're constantly giving you a histamine response which eventually builds up and you go anaphylactic. Anaphylaxis is any kind of sudden onset of allergic reactions. It does not mean death and it does not mean your throat swells shut. It can be but that's not definitive. MCAD or Idiopathic Anaphylaxis cannot be diagnosed by a mere blood test. Mastocytosis however can be just because it's systemic and sort of involves all of your body and bent on destroying it more or less. MCAD is like Fibro, it's the last option left after you've exhausted every other possibility.
My labs came back clean, which is not uncommon. But unfortunately the doctor didn't get it and couldn't tell me why I get sick from smelling burned food, eating watermelon, or olive oil. So instead of telling me she couldn't help and I should seek a specialist she instead told me to GO TO A THERAPIST. Because clearly allergic anaphylactic reactions are caused by neurological or mental disorders. I am flabbergasted by the treatment and by the cruelty. Doctors cannot admit they just don't know so instead blame the patient. I've heard it enough times, you'd think I'd be able to handle that line by now but guess what, I can't. Not now. Not after the hell I've been through.
She then continued to push the POTS problem which also makes no sense. I swear I don't think she read up on POTS or MCAD or anything because her logic was beyond illogical, Spock would have bitch slapped her. POTS doesn't create allergic reactions or the inability to eat. But MCAD involves POTS, causes POTS reactions, even has the same symptoms. POTS and MCAD are linked--I even gave her the AMA paper to prove it but I guess factual evidence means nothing to her.
I told her if this isn't allergies then why do I feel better with extra antihistamines? Why does the throat swelling go away then? She told me that's not conclusive evidence. OK well if antihistamines aren't used to treat allergic reactions than tell me why the ER prescribes the same exact dosage I take when you come in for an anaphylactic reaction? I mean fuck, if they don't do anything to help an allergic reaction....
It's pretty obvious IA is the culprit...Idiopathic Anaphylaxis means anaphylaxis with no real cause. I shouldn't be sick from everything. And hey guess what when this all started, I WASN'T STRESSED. I was in a decent place in my life in July. My mom was cancer free, my job was fine, I wasn't ill, I didn't have the POTS thing going on. None of the fucking food shit happened until later and even then I have remained INCREDIBLY CALM. I have only twice feared for my life since. I'm doing a magnificent job coping so how dare you blame me because you can't figure it out.
I'm so angry and disappointed and sad. So sad that I can't even bring myself to cry. All I want to do is hole up in my room and take my mind off of this forever.
I can't eat anything still. You guys I'm eating pancakes, steak, and potatoes. That's it. FOR TWO FUCKING MONTHS THE SAME MEALS. And NOW I think milk is causing a problem so I haven't been able to eat those three things. Olive oil caused a problem too. I don't know what to do and I'm just tired of being hungry and hurting.
We brought this up that now I can't eat anything at all and she more or less said, "Well you're getting your caloric intake and protein and carbs, you're fine." WHAT? EXCUSE ME? YOU NEED VITAMINS YOU IDIOT. A healthy diet is essential for a healthy body much less for someone with Fibro and POTS and any other autoimmune disease. Little changes like this can cause devastating results in someone like me. What she more or less said was, "Well, you're fat, so I don't see why you not eating is a problem." I'm still losing weight in an unhealthy way and though I'm glad to see it go it's not right. If I were a normal sized person they would take this really seriously.
OH oh and even better she tells me that the fact that I end up in the ER all the time means they're going to think that I'm nuts too btw. Because clearly you seeking help FOR YOUR FUCKING THROAT SWELLING means you're nuts.
I'm so tired of struggling you guys. I'm pretty fucking good at picking myself up and trudging along but I think this time I might be licked. I don't think I can live like this much longer. Why is it so fucking hard to get help? And who was the idiot who made us believe that someone was actually out there to help us in the first place?