www.incontinentsupport.org

Tomorrow I start at PHP program as I need some behavioral intervention with scheduling medications and I am at a loss of coping skills to deal with stress. The PHP program runs from 9-2:15 pm and I have physical therapy after a few days a week.

My health issues have made it difficult for me to get out like I would like to, especially for long periods. I often have to lay down to alleviate tachycardia from POTS and I seriously lack a wardrobe that accommodates the bulk of my incontinence briefs that does not also cause MCAS skin reactions. Likewise just general fear of leaking/ diaper bulk and changing in public stresses me out. Arguably the trifecta of POTS/MCAS and incontinence has made me a hermit (I have barely left my house in months for extended periods or to strange places). If I am having low POTs/MCAS symptoms, I still feel unable to go too far with IC. It sucks.

I am a bit nervous about the program, although I want to make some healthy changes. I did disclose my health issues but I am not sure how that will be handled. I plan on just bringing my usual bag that has briefs, extra pants/compression shorts, wipes, disposable bags, and my other medical things like Epi Pens. I definitely fear being judged because I have had my fair share of encounters within the medical community that have been frustrating and embarrassing. You think they would be empathetic or nonjudgmental but that has not always been the case. I have straight up told nurses before for example about these issues but then they seem shocked when they see a full brief in my bag and make a funny face... it’s like “well do you actually expect me to piss in my jeans all day?” Likewise I guess I am a bit concerned about being in a group/ not having privacy for changes... I don’t want to make a big deal about it and stay relaxed but I would feel better if extra discretion was given.

I am probably worrying over nothing, but some reassurance or virtual (friendly) slap in the head to get me outside of my excessive worries would be appreciated! I’m just kinda nervous to be gone so long and having to face that head on and not being able to completely hide my issues.

'pedro, pardon my ignorance, but what is PHP, POTS and MCAS? I've also had a lot of medical intervention over the last several years, but most of my encounters have been kindly and professional. Just do what you need to do, go where you need to go, and bring what you need to have with you. If anyone looks @you disapprovingly and/or makes a nasty comment, just stand your ground and state in a friendly way something like 'Yeah, I need to have this stuff with me.', or 'My medical issues are a real bummer.' Is it possible for you to have some of these provider visits in a virtual format, i.e., phone appointments or e-visits? I've done that a few times recently due to Covid-19.

W.

You do you, and don't worry about everyone else. Bring what you need and don't make a big deal about it and others probably won't either.

Wetters wrote:'pedro, pardon my ignorance, but what is PHP, POTS and MCAS? I've also had a lot of medical intervention over the last several years, but most of my encounters have been kindly and professional. Just do what you need to do, go where you need to go, and bring what you need to have with you. If anyone looks @you disapprovingly and/or makes a nasty comment, just stand your ground and state in a friendly way something like 'Yeah, I need to have this stuff with me.', or 'My medical issues are a real bummer.' Is it possible for you to have some of these provider visits in a virtual format, i.e., phone appointments or e-visits? I've done that a few times recently due to Covid-19.

W.

PHP is partial hospitalization program. I have been in a bit of low spirits lately and not been taking super great care of myself due to a vicious cycle of fatigue ---> depression/anxiety ---> fatigue. This has been going on for quite a while due to the POTS and MCAS in addition to previous mental health issues that basically got put on hiatus until we got a clear-cut diagnosis for POTS/MCAS. It has been a huge struggle to get in any sort of normal routine for months and I cannot consistently take my medications for my POTS/MCAS and that contributes to the fatigue and depression/anxiety as well, as they both have neuropsychiatric effects in addition to a physical toll.

POTS (postural orthastic tachycardia syndrome) is an autonomic condition that effects my heart primarily but has other various effects on the body. Basically, my nervous systems are not communicating properly and it is clinically evident in my heart. Basically what happens in my heart rate (which has always been in the 60s) now is beating too fast due to the autonomic disarray, and it now averages around 80-90 while supine. Immediately upon standing, it sky rockets 30-40 BPM and can continue to increase thereafter. So basically, when I go from laying to standing, my heart shoots from 80-90 to 130-120 which results in syncope. PT also revealed that the POTS seems to be messing with my vestibular functioning as well so I often have vertigo that is more classical of inner ear/eye tracking disturbances. It also causes insane "brain fog", coat hanger pain, blood pooling, general fatigue, shakiness, GI problems, and difficulty regulating body temperature, etc. POTS has also made my bladder issues much worse as I constantly fluctuate between constipation and diarrhea, and it is known to aggravate the bladder (some folks have increased OAB, some have retention). There isn't a treatment but it can be managed for about 3/4 of people with salt/water loading, medications, diet (some people find carbs makes their symptoms worse but I do not) and exercise. It sucks because conditioning can help alleviate your POTS, but you feel so crappy to begin with that it's hard to get started, and I know if I push it too much, I'll be bedridden for 1-3 days after.

MCAS (mast cell activation syndrome) is a disorder where mast cells in the body are over-reactive. Mast cells are white blood cells found everywhere in our bodies, and they are responsible for immune regulation, wound healing, and have a critical role in allergen response. Without them, we would die. However, my mast cells are "hyper responsive" meaning that I constantly have "allergic" reactions to seemingly nothing or minute triggers. I have no actual "allergies" but when my mast cells degranulate (or "react"), over 200 chemicals are abruptly released causing what mimics and feels like an allergic reaction. These reactions are typically mild/moderate but they can escalate to anaphylaxis if too many mediators are split. You treat the symptoms of MCAS just as you would allergies likewise. My triggers include foods (I lived off of 4 foods for months, and gradually reintroduced a ton of stuff, so now I really only avoid coconut because that will actually make me anaphylact, and I avoid foods that cause too many mood swings... "masto rage"... or that cause too much GI discomfort, and monitor others as they can be tolerated often but occasionally cause bad reactions- like nuts- but for the most part, I now eat what I want and just "ride through" the itching and observe that I don't have severe symptoms and treat them if I do), medications (I can safely take about 3), temperature, sunlight, exercise, pressure, and chemicals/perfumes. MCAS causes pretty much allergy symptom you can think of in addition to bone pain, swollen lymph nodes, "burning skin", more GI issues, urinary tract issues, insanely painful periods/hormonal issues, and has worsened my mood/attention issues. This also has no cure and can only be treated with prophylactic medications/mast cell stabilizers.

We have no idea why I developed both MCAS and POTS but we think that it may be a result of an eating disorder I struggled with for about 12-13 years (I have spent large periods of my life grossly emaciated due to anorexia/bulimia). We also think that the ED contributes to my incontinence issues, in addition to just pretty bad anxiety/PTSD, and POTS/MCAS also have significantly amplified my urinary issues, but to be honesty still don't have a clear cut "reason" as to why that is occurs for me. I am doing really well with my ED now, I actually started to have reactions about 4 months into recovery which really sucks, but it has been a huge motivator to stay on track as I don't want to further harm my body. Since I have been fully weight restored, my symptoms with MCAS have mildly improved likewise. Anyway, I hope this clears things up for you. Sorry to include so much, but although both POTS/MCAS are way more common than we assume, they are both underdiagnosed and recognized, and it can be hard to access accurate information about them.

Please take care of yourself!

Jenn wrote:You do you, and don't worry about everyone else. Bring what you need and don't make a big deal about it and others probably won't either.

Yeah I am trying hard not to worry, but I have seriously had some bad experiences in the health care field regarding my IC. I know a few years ago I was hospitalized and I'll just never forget the disapproving shame I received about my use of briefs from nursing staff during a bag check, which is heartbreaking because these are the last people who are supposed to judge you. It helps me personally feel a lot less embarrassed if the person the receiving end is neutral, but I swear their own discomfort is toxic.