www.incontinentsupport.org

Hi! I hope everyone is staying safe and well during the COVID situation we at facing. I don’t want to say too much more on that as at least in the US it has been the most unrelenting topic of discussion.
That being said, I know that it has potential unintended health, social and financial consequences on us all, and I hope that everyone here is coping ok.

So my urologist canceled my appointment again (family emergency this time).
I was supposed to see me the beginning of March. I am very frustrated with this (they also rescheduled
me the first time and forgot about it!) but trying it be understanding as we all have been in circumstances we can’t control/private lives that need to be cared for. Nonetheless, I had a yearly physical in the interim and I (attempted) to have this conversation with my PCP since the appointment has been delayed twice. I have been unable to successfully communicate the extent of my bladder issues for a while, but I have been at least trying to communicate that they are present. I am frustrated with myself for this and feel it really limits my ability to utilize my resources.

Anyway, my PCP and I agreed that I should try physical therapy first before trying meds again. The meds I have tried at 18 and 20 had minimal results for my daytime issues and actually made my bedwetting worse because I would get super thirsty and drank more, and the meds seemed to wear off night. About two years ago I started having daily allergic reactions to what seemed like everything, and we recently found (February) out I have Mast cell activation syndrome and POTS. So when I tried medications again last year I reacted to them terribly (I can now only safely take three medications). After COVID peaks and normalcy is returned I will be starting physical therapy for my urge IC.

I am curious if anyone has started physical therapy for urge IC? Based on information I have gathered, it seems to be effective for mild/moderate cases, but I don’t feel I fit into that category... I have several wetting accidents a day and a “good day” is successfully voiding comptletely in the toilet 4 times...
I go through 5-6 depends if I don’t have access to better quality products due to finances. To be honest, I don’t expect it to fix me, but if I could reduce those accidents by half I would have better overall functioning and significantly less money on supplies.

I also have some concerns that my issues may be exacerbated by mental health issues (I have PTSD anxiety disorders and in recovery- and doing well- from a severe eating disorder for 13 years). I don’t know if this is true or not- my stress around the issue alone is enough to discuss these things in therapy, but I worry sometimes that I may have been misdiagnosed with urge IC and perhaps have some untreated voiding dysfunction. I had urinary issues as a small child that had a temporary resolve and resumed in late middle school, which I have been hiding from my family since then. It has been suggested to me that my urinary issues have been exacerbated by anxiety, trauma, physical wasting from repeated severe malnourishment, but I honestly have no idea if this is the case.

Lastly, I am struggling financially to afford incontinence supplies. As my issues have gotten worse over the years, I have progressed from using pads to pull ups to full briefs during the day and pull ups to full briefs at night. My only source of income is SSI. Normally I receives supplies from a local charity but they are closed due to COVID. I “borrow” money (and absolutely hate myself for it) from my mom for good quality briefs (NorthShore) to wear so I can go out and about. The fact that the charity is closed has me scrambling for money. I hate stealing from my family but I don’t know what else to do. I receive Medicaid and I know that they can help me cover costs but I have been to shy to ask for a prescription. I supposed I would like to give PT a try first. But I easily spend $200 a month on IC supplies and that cost is now driven further by my inability to access free community resources. $200+ a month is about 1/4-1/3 of my income depending on my needs at that given time.

I am sorry to rant so much and pose so many questions but I feel engulfed with stress about my health issues and financially/socially unable to cope. I am hoping the PT and psychotherapy provides relief but remain skeptical. I honestly wouldn’t be half as stressed if I had the financial means as well; being in a constant state of anxiety due to rationing my supplies and fearing I will run out and not be able to replace them is overwhelming, and the guilt of stealing from my family hurts. I don’t want to do that anymore. I don’t want these problems anymore.

If anyone has words of wisdom to share, they would be appreciated. Again I hope everyone stays safe and healthy. My thoughts and prayers are with anyone who is struggling. Please take care!

As our whole planet is discovering, financial distress is stress indeed. There are tens of millions of us sharing the same leaky boat. Your continuing need for disposable supplies makes this worse. I try to go to the toilet at least every hour in order to make my protection last and minimize laundry. Can you move in with your family to help stretch your resources? Are there any other services in your area that you have not yet tapped, such as YMCA/YWCA, Catholic Charities, or your county welfare office? Good luck and keep us informed.

I already live with my family; they are relatively toxic and unsupportive.
It’s actually adding to the stress because I know have to take more measures to conceal my urinary issues. The only places open right now are grocery stores doctors offices and gas stations basically.
I live in MI and we have the third most cases in the US so it’s almost like living in a war zone.

Sorry to hear of your struggles. My situation is a bit different than yours, but I’m on ssdi as well for both physical and mental health so I understand the frustration. My incontinence is a result of an accident but I still had a “coming out” of sorts to do. About a month after my accident I had to tell my parents what was going on. I was buying attends and having horrible leaks. That’s when I found this board (god it’s been 5 years now!) and learned of better protection (xp medical and northshore). It would benefit you to bite the bullet and get a prescription. There is a medical supply place called J&B medical and they (from what I understand) take Medicaid and serve MI. I’d suggest not stealing from your mom because when she finds out it’s going to make things worse.

Yeah I have incredible guilt about taking money to meet my basic care needs but I just can't face telling them. They are so toxic and would use this against me, and I cannot trust them to disclose my personal issues to others as I have made the mistake of entrusting them with private things before and they blab to my family, or use these things against me in an argument. I went to my PCP and mentioned how I have been at a loss of how to deal with IC issues, as I have been faced with other very debilitating health issues over the past few years. I have MCAS which makes me allergic to most medications and POTs has rendered me bedridden most of the day (a good day is just doing a few things here and there and sitting up). I wanted to ask for financial help from my Medicaid but froze in embarrassment and now I am kicking myself.

I have looked into J&B online and I find their website kind of confusing, so if you don't mind me asking, what types of supplies do they offer? I was going to call them but I have no idea if they are still operating due to COVID and MI being hit so hard. I would prefer if I could not get things shipped to my house because I do not live alone, but I don't know if that is an option. I have heard the incontinence products Medicaid offers aren't the greatest, but it seemed like they had quite a few options. Just curious on your experience with them.

Thanks for your advice. It is getting to the point where I want to tell my family because the stress of hiding my issues is eating away at me, but I ultimately would prefer to disclose these things when I am physically out of the house, which I am working on as of right now by applying for housing and hopefully soon be working within the range that I can for my SSI that also accommodates my health issues. I think just having a physical barrier would help with that.

Take care!

J&B from what I gather provides diapers, chux, and wipes. I don’t use them as they don’t take DC Medicaid but I know someone who has gotten abena from them with a doctors note. Medicaid does pretty much only provide crap though. I have a medical supplier in Maryland who bills my insurance for premium diapers. Medicaid pays 88 cents per diaper and I pay the rest. I get northshore supremes. I can barely afford that but i cut a lot of my expenses out. Like I only have around $70 for this month. Luckily my food stamps got increased so food is taken care of. It sucks

Yeah it truly does suck. Providing people with quality IC supplies not only reduces overall cost (it’s just more upfront and with a good quality brief I can eliminate “hidden” costs of extra laundry, boosters in cheap diapers, trips to doctors for prescription rash creams etc.) but also enables someone who is disabled for example, to better there lives socially and potentially economically. I am largely disabled but if I could properly manage my other health conditions, I would have more opportunity to work at least some and earn a bit more than I do, thus I more likely to contribute to the economy instead of mostly just collect resources. A lot of people on SSI/SSDI are like me (I understand not all of us are, though). Our healthcare system is very short cited and does a pretty poor job that understanding that by eliminating barriers and providing those in need adequate services can help get them out of (or depend less on) a system that is already strained.