Saw Dr. Vadas on Monday.
Since my bone marrow biopsy came back 'normal' (once again an abundance of eosinophils; which I've had with both bmb's and all three live blood analysis' I've done with the Homeopath/Naturopath) he wants to put Mastocytosis on the shelf for a few weeks and forget about it as a possible diagnosis. I am, however, to stay on the medications for it because apparently I need all the help I can get.
He's taking a more indepth look at the whole latex thing. Doing an IgE mediated blood test for latex. As well, we picked 5 of the foods I have trouble with or have had trouble with, from the now extensive list of possible cross-reactive latex foods and we're doing blood tests for those. For the next 6 weeks I am to avoid these foods, plants and other possible reactants, that are on the latex cross over lists, as well as stay on the low histamine diet. Dr. Vadas said nicely, "I guess you'll be eating a lot of meat." I didn't have the heart to tell him that my gut can't tolerate pork & beef, and sometimes has trouble with chicken, turkey, etc. My husband made a joke about me eating lots of tofu...only trouble is, SOY is on the list of DO NOT EATS. So, today I went to get the blood tests (cost us $120.00 because they aren't 'normal' tests.)
It's easier to list what I CAN eat, rather than what I can't. So far, I've got:
oats
chicken (when I can tolerate it)
salmon (never have a problem with it)
raspberries
blueberries
rice
lemon
That's it. I'm likely to lose some of this bloody weight on a diet like this. Gonna have to be careful not to get constipated. Not sure if any of you fluctuate between severe constipation and diahrea but I do. No fun. Rarely is my gut balanced these days. Hasn't been for about 3 years now. And getting worse. It's weird how you get used to it.
I AM going to say this. I've been trying to cut out wheat from my diet for the past two weeks, since seeing my family GP, who can't believe that we haven't tested me for Celiac yet. His suggestion that I try it. When I don't eat it, it seems, my bones don't hurt half as much. It's incredible really. Nor do I bloat half as bad. It turns out that wheat is on the list of latex-cross over reactive foods...I didn't know that. I thought I had the list but it turns out it is WAAAAAAAAAAAAAAAAAAAAAY more extensive than I thought or had researched. Dr. Vadas says there are new lists. And, this is one of those cases where self-education is good for the patient.
Additionally, connected or not?, I went for the visual field test at my Optometrist's office today. She needed this last test to finalize the report for my GP and Dr. Vadas. Seems my left optic nerve has NOT repaired itself the way that we had all hoped it would over the past 3 years, and is worse. Love that question: "Fiona, have you been tested for MS?" I have. They found very small lesions on my brain that they said were of no consequence unless they get bigger. I sense another trip to Sudbury and an MRI sometime soon...
Hysterectomy is on hold. Dr. Vadas needs to sign off on the OK for it, due to the whole anaphylaxis thing. He says unless I have cancer in my uterus, NO WAY. Apparently, I'm too high risk and whatever pain I am in will have to stay for now. We have to get a handle on the anaphylaxis first. That's our first priority. This led to the discussion of Catemenial Anaphylaxis. This funky phrase basically means anaphylaxis during your female cycle. Ergo, more reactions during ovulation and menstruation...welcome to my world. This could be Masto too though.
So...sort of feel like I'm in the midst of a HUGE guessing game, OH WAIT, I AM!!!!! I'm past being frustrated. I realize now the importance of 'elimination' in this game, and my body needs me to remain calm, focused and as happy & healthy as I can be. This includes resting on those days I just can't do anything. Like yesterday. I'm exhausted today too, and haven't done much. And, this means being kind to myself.
No more telling myself that I'm a loser; that I'm useless; that I'm worthless; that I'm 'fine' and to just get on with it; that I've somehow 'created' this illness/whatever it is in myself.; and, no more hating myself for where I've ended up. What I must do is to treat myself with kindness and care. If I loved myself half as much as I love my children, I might feel as secure, loved, worthwhile, happy and healthy as they do. I can do this much for me.
Since my bone marrow biopsy came back 'normal' (once again an abundance of eosinophils; which I've had with both bmb's and all three live blood analysis' I've done with the Homeopath/Naturopath) he wants to put Mastocytosis on the shelf for a few weeks and forget about it as a possible diagnosis. I am, however, to stay on the medications for it because apparently I need all the help I can get.
He's taking a more indepth look at the whole latex thing. Doing an IgE mediated blood test for latex. As well, we picked 5 of the foods I have trouble with or have had trouble with, from the now extensive list of possible cross-reactive latex foods and we're doing blood tests for those. For the next 6 weeks I am to avoid these foods, plants and other possible reactants, that are on the latex cross over lists, as well as stay on the low histamine diet. Dr. Vadas said nicely, "I guess you'll be eating a lot of meat." I didn't have the heart to tell him that my gut can't tolerate pork & beef, and sometimes has trouble with chicken, turkey, etc. My husband made a joke about me eating lots of tofu...only trouble is, SOY is on the list of DO NOT EATS. So, today I went to get the blood tests (cost us $120.00 because they aren't 'normal' tests.)
It's easier to list what I CAN eat, rather than what I can't. So far, I've got:
oats
chicken (when I can tolerate it)
salmon (never have a problem with it)
raspberries
blueberries
rice
lemon
That's it. I'm likely to lose some of this bloody weight on a diet like this. Gonna have to be careful not to get constipated. Not sure if any of you fluctuate between severe constipation and diahrea but I do. No fun. Rarely is my gut balanced these days. Hasn't been for about 3 years now. And getting worse. It's weird how you get used to it.
I AM going to say this. I've been trying to cut out wheat from my diet for the past two weeks, since seeing my family GP, who can't believe that we haven't tested me for Celiac yet. His suggestion that I try it. When I don't eat it, it seems, my bones don't hurt half as much. It's incredible really. Nor do I bloat half as bad. It turns out that wheat is on the list of latex-cross over reactive foods...I didn't know that. I thought I had the list but it turns out it is WAAAAAAAAAAAAAAAAAAAAAY more extensive than I thought or had researched. Dr. Vadas says there are new lists. And, this is one of those cases where self-education is good for the patient.
Additionally, connected or not?, I went for the visual field test at my Optometrist's office today. She needed this last test to finalize the report for my GP and Dr. Vadas. Seems my left optic nerve has NOT repaired itself the way that we had all hoped it would over the past 3 years, and is worse. Love that question: "Fiona, have you been tested for MS?" I have. They found very small lesions on my brain that they said were of no consequence unless they get bigger. I sense another trip to Sudbury and an MRI sometime soon...
Hysterectomy is on hold. Dr. Vadas needs to sign off on the OK for it, due to the whole anaphylaxis thing. He says unless I have cancer in my uterus, NO WAY. Apparently, I'm too high risk and whatever pain I am in will have to stay for now. We have to get a handle on the anaphylaxis first. That's our first priority. This led to the discussion of Catemenial Anaphylaxis. This funky phrase basically means anaphylaxis during your female cycle. Ergo, more reactions during ovulation and menstruation...welcome to my world. This could be Masto too though.
So...sort of feel like I'm in the midst of a HUGE guessing game, OH WAIT, I AM!!!!! I'm past being frustrated. I realize now the importance of 'elimination' in this game, and my body needs me to remain calm, focused and as happy & healthy as I can be. This includes resting on those days I just can't do anything. Like yesterday. I'm exhausted today too, and haven't done much. And, this means being kind to myself.
No more telling myself that I'm a loser; that I'm useless; that I'm worthless; that I'm 'fine' and to just get on with it; that I've somehow 'created' this illness/whatever it is in myself.; and, no more hating myself for where I've ended up. What I must do is to treat myself with kindness and care. If I loved myself half as much as I love my children, I might feel as secure, loved, worthwhile, happy and healthy as they do. I can do this much for me.
