I definitely think outside the box and outside of just conventional medicine for my disorders. Ever since I developed Mast cell disorder (MCAS) specifically, I do focus on root causes and follow functional medicine approaches as well as lowering my toxin load in products, foods, etc. as much as I can. I don’t prescribe to following one p…
I definitely think outside the box and outside of just conventional medicine for my disorders. Ever since I developed Mast cell disorder (MCAS) specifically, I do focus on root causes and follow functional medicine approaches as well as lowering my toxin load in products, foods, etc. as much as I can. I don’t prescribe to following one person or “plan” though as that just doesn’t work with my conditions, especially MCAS. We have to work with our specific triggers and situation. It’s not an easy road but, I’ve been at it for a long time now and you do get better at managing your health.
My mother was a nurse and I believe she suffered a great deal of stress at work that negatively impacted her health.
You seem as though you are managing your treatment on your own.
Do you have someone that you trust that can review your treatment directions and help you manage, navigate and assess the pros and cons of your treatment decisions?
Sometimes two heads are better than one.
I don't know if you are a spiritual / religious, but I find that prayer gets me through life's difficulties and sufferings.
FWIW, I came across this when I was looking up your condition
It’s a complicated condition that’s for sure. I have read that link you shared before, along with hundreds of other sources over the years, and I actually have corresponded with Dr. Afrin who that article mentions. He wrote a good book too. He is not my MCAS specialist but I see one of the other well known ones in Boston. There’s not that many in the country. I do take a mixture of traditional meds and natural mast cell stabilizers/vitamins/supplements etc., as it mentions in the post. I’m working on that balance with decreasing my poly pharmacy in general but also having my current regimen be a greater ratio of natural stuff vs. pharmaceuticals. The list of natural treatments in that article is good per se, but I still believe every patient needs to discover where their problem areas are, each of us can get hit harder in different organ systems, and which supplements would best suit their needs. He’s got 21 different supplements listed and you can’t take all of them, I’m not sure it’s even logical to just pick one “team” as he calls them. NAC is a tricky one, there are too many conflicting reports which is why I never bothered with it. Some list as a mast cell stabilizer, but most of literature says it causes increased histamine release. My sister is like you though, she was able to stop her Singulair, and even despite a significant heart arrhythmia, her shortness of breath has improved on NAC.
Working in the nursing field definitely caused my health to deteriorate a lot faster than I believe it would have. I was run into ground physically and mentally. As far as having someone trustworthy to review treatment decisions…I am generally the person that everyone else comes to for that advice and help navigating the system so, I really haven’t found a better advocate or brain to manage things than my own. Definitely am a believer. Navigating life and illness with understanding of God’s providence definitely helps overall outlook and attitude about things.
I am generally the person that everyone else comes to for that advice.
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It's admirable that even though you are suffering through a chronic illness,
you still have the strength to help others in need❤️. There is such a thing as Caregiver Stress Syndrome...don't neglect your own health in an attempt to care for others as you might make your condition worse.
You will be in my prayers Julia C.
May God Bless and help you restore your health soon!!!
I definitely think outside the box and outside of just conventional medicine for my disorders. Ever since I developed Mast cell disorder (MCAS) specifically, I do focus on root causes and follow functional medicine approaches as well as lowering my toxin load in products, foods, etc. as much as I can. I don’t prescribe to following one person or “plan” though as that just doesn’t work with my conditions, especially MCAS. We have to work with our specific triggers and situation. It’s not an easy road but, I’ve been at it for a long time now and you do get better at managing your health.
My mother was a nurse and I believe she suffered a great deal of stress at work that negatively impacted her health.
You seem as though you are managing your treatment on your own.
Do you have someone that you trust that can review your treatment directions and help you manage, navigate and assess the pros and cons of your treatment decisions?
Sometimes two heads are better than one.
I don't know if you are a spiritual / religious, but I find that prayer gets me through life's difficulties and sufferings.
FWIW, I came across this when I was looking up your condition
https://hoffmancentre.com/natural-treatments-for-mcas/
One of the supplements mentioned, N-acetylcysteine, got me off my Asthma meds.
It’s a complicated condition that’s for sure. I have read that link you shared before, along with hundreds of other sources over the years, and I actually have corresponded with Dr. Afrin who that article mentions. He wrote a good book too. He is not my MCAS specialist but I see one of the other well known ones in Boston. There’s not that many in the country. I do take a mixture of traditional meds and natural mast cell stabilizers/vitamins/supplements etc., as it mentions in the post. I’m working on that balance with decreasing my poly pharmacy in general but also having my current regimen be a greater ratio of natural stuff vs. pharmaceuticals. The list of natural treatments in that article is good per se, but I still believe every patient needs to discover where their problem areas are, each of us can get hit harder in different organ systems, and which supplements would best suit their needs. He’s got 21 different supplements listed and you can’t take all of them, I’m not sure it’s even logical to just pick one “team” as he calls them. NAC is a tricky one, there are too many conflicting reports which is why I never bothered with it. Some list as a mast cell stabilizer, but most of literature says it causes increased histamine release. My sister is like you though, she was able to stop her Singulair, and even despite a significant heart arrhythmia, her shortness of breath has improved on NAC.
Working in the nursing field definitely caused my health to deteriorate a lot faster than I believe it would have. I was run into ground physically and mentally. As far as having someone trustworthy to review treatment decisions…I am generally the person that everyone else comes to for that advice and help navigating the system so, I really haven’t found a better advocate or brain to manage things than my own. Definitely am a believer. Navigating life and illness with understanding of God’s providence definitely helps overall outlook and attitude about things.
I am generally the person that everyone else comes to for that advice.
----
It's admirable that even though you are suffering through a chronic illness,
you still have the strength to help others in need❤️. There is such a thing as Caregiver Stress Syndrome...don't neglect your own health in an attempt to care for others as you might make your condition worse.
You will be in my prayers Julia C.
May God Bless and help you restore your health soon!!!
That’s just what happens when you have the nurses brain! Lol. Don’t worry though, I keep on top of my own health as much as possible. 👍🏻