Totally! The last few years I had some health issues. I was told to keep trying to figure it out even the “take care” with a smile statement. The unwillingness to tackle the problem….maybe the patient will die and go away attitude.

This is a complicated situation that has involves several layers needing attention. I generally don’t think it’s about a medical system being “ill-prepared” or “not caring” about SCI individuals anymore than having those same attitudes towards people with dementia, MS, Parkinson’s, STXBP1, Interstitial Cystitis, or any other longterm debilitating medical condition.

The time of a kindly country doctor who comes to your home whenever you need it in exchange for whatever you have to bargain with and will go to the ends of the earth to find a treatment for what ails you is long past. Few have the time or curiosity to research strange orphan diseases due to the high cost of loans they owe to medical school, running their office, and having a family. Unless motivated by a family member or close friend they aren’t emotionally confronted by people with rare catastrophic medical situations. Were you?

It’s not just issues like strange things in your bladder, pain without feeling, not being able to get equipment fixed or replaced quickly when it’s an urgent need, needing assistive speech equipment that’s not a luxury, having to have help with care at home because one person can’t do it 24 hours a day, needing medications that cost thousands a month even with insurance, being denied pain medication because there’s a war on drugs, a system that would rather put you in a facility than provide help to keep you in-home, letting medical issues go to the point of surgery instead of allowing preventative treatments, it’s a medical system that has an inability to understand that quality care is individual care, prevention, doesn’t follow a designed path or medical code sheet, and takes more than a 10-minute visit with the specialist. The Affordable Care Act, however, doesn’t allow that kind of medical care and doctors who mostly now work for medical groups as a result of the Act, are highly pressured to work to the payment “codes” in 10-minute segments. In some offices they acutally have boards with lists of who is doing the best at billing each day, a competition, so each knows where they stand as far as holding up their end of contributing to the group.

I’m fortunate enough to have an incredible urologist (I’m not an SCI patient, but I do have Interstitial Cystitis along with a slew of other autoimmune diseases). He is a one in a million who does take extra time, so patients have often waited 2-4 hours to see him, although that doesn’t happen as often as it did 20 and 30 years ago. He takes time to listen, to figure out what is going on, to research. He is one of the leading doctors in IC research in the US and has patients who come from many surrounding states for treatment. But there are many IC patients who still go to uro doctors who still don’t know how to treat IC and suffer horribly from ignorance even though it’s a disease that’s been fairly well known for at least 30 years.

The same is true for people who have dementia. My mother-in-law had it and we had to begin helping her around 2000 until she died in 2007. But still today the people I help in a caregiver support group are faced with the exact same issues our family faced then and I don’t get it. It’s been 20 years and no progress has been made at all in diagnosis, treatment, care, assistance, community resources, with the billions that have been raised and spent by government and groups and I don’t understand. It makes me furious.

The same is true with SCI, My mom was injured during the same time we were caring for my mother-in-law and as a quadriplegic we needed all the services, assistive devices, medical treatments, in-home help, adaptive home changes. There have been some remarkable strides made in these areas for some people but many of those are still in the research and testing stages still, or only for those who have private money, but not paid for by insurance, Medicare, or Medicaid. I don’t understand that either. Why won’t Medicaid or insurance pay for longterm care services in-home or for a personal assistant which a quad needs to live alone? Why are some personal needs paid for and others not? Why can’t a paralyzed person living in a nursing facility get a power chair without a fight? or a speech generating device? These things are slowly changing but it’s such a struggle and takes years for one individual and doesn’t apply to others once one wins the battle.

It’s tiring. It’s stupid that each person, family, has to do the same thing over and over instead of there being a guide as to what to do when bad things happen. (I do share the CRPF info with many, I wish the Alz. Assoc. would provide a similar guide for people with dementia, as well as other disease/need groups for their people).

Don’t give up the fight. There is a uro out there to help you, you just haven’t found the right one. I agree with what the couple said about trying lemon/vinegar in water. I’d be careful about an antibiotic as using one without an actual UTI can cause resistant bacteria to be an issue later. You may want to look at the websites for Interstitial Cystitis even thougth you don’t have it. Interstitial Cystitia Network and Interstitial Cystitis Association both have informaton have good resources on health bladder options. D-Mannose is a good natural supplement that helps calm the bladder, Chrondroitin Sulfate helps heal and rebuild the bladder wall, Aloe calms the bladder. You can get these online or from the two above places. Keep educating doctors and others because things improve for each person as we share information so they don’t have to relearn what we already know.

Have courage and be kind.