Have you tried NAD or PRT?

October 15, 2024

Hello friends, it’s been a while. I have thought about writing so many times but sometimes I was too fatigued, other times I was too busy, and then there were the times I wasn’t sure what to write about. Today, though, I want to ask if you’ve tried either of the new treatments I’m considering.

One of the many difficult aspects of living with a chronic illness is that we need to make difficult, complicated, often expensive decisions about our health. I am facing several of those decisions right now, and I’m at a loss. Something needs to change because the extra fatigue I have had over the past year and a half is having a very negative impact on my life. I would also like to understand why I suddenly gained 20 pounds, my blood pressure went way up (from 90/60 up to the “normal” range), and I developed a lot of acne, all within a year. I’d also like to know why none of my medical practitioners think this deserves attention!

Meanwhile, one of my practitioners suggested NAD treatment. This is a mitochondrial treatment that is used by her practice to help with fatigue and other symptoms. Other people use the treatment to help with anti-aging. Personally, I don’t know that I’d want to mess with my body for the purposes of defying aging, but I’d be very happy to try something that might help with my fatigue. Still, I have only found one person who has tried a version of this, and they weren’t do the version my practitioner recommends. While they did NMN, my doctor is recommending direct NAD+ if taking orally, or else direct NAD if taking through an IV. An IV is cheaper (none of this is covered by insurance) and I wouldn’t have to worry about gluten but it involves travelling, staying for at least 2 nights with a friend (the night before the IV and the night after), finding a dog sitter, and enduring a 6-8 hour IV. The oral version will cost more, I have to find a gluten-free and corn-free version, and I don’t always process meds well so there’s no way to know if it will even work. Then again, the IV might not work either.

I’d love to hear from people who have tried this, what they hoped to gain from it, and if it worked for them. I’m going to have another appointment with my practitioner soon and I’ll probably try the oral NAD+ if I don’t learn anything new before then. At least I could try it from home, and if it does work or I react badly then I can stop. If it works, then I could switch and do the IV later, when I can plan a visit out that way.

Typically I would say, “there’s no harm in trying” but this time, I’m hesitant. I suppose it’s because this is such a new treatment, most doctors haven’t even heard of it, and I don’t know anyone who has tried it. Still, something has to change. And what if it helps?

Photo taken from a mountaintop of green, yellow, and red trees below and blue sky with white puffy clouds above

The next thing I’m researching is pain reprocessing therapy. A friend had a lot of success with this and I absolutely want to try it. I’m just stuck on how.

Pain changes our brain. I already knew this, and it’s key to this treatment. Some pain we feel is due to structural issues that cause pain. Other pain is due to our brain’s rewiring. PRT trains the brain to tell the difference, and it can greatly reduce pain. According to a friend who is trained in this treatment, some of my pain should be treatable with this method, though not all of it.

So there’s no problem, right? Well the problem is that I don’t know who to see for treatment. While I could theoretically find a practitioner who takes Medicare insurance, it feels like searching for a needle in a haystack. If I can’t find that person, and it could easily cost several thousand dollars. Plus, I want to find someone who’s good! My friend who is trained in this method can’t treat me because it would be unethical. She did give me the websites with lists of practitioners, but it’s going to take a long time to call/email all of them, and frankly, I’ve been struggling to overcome the ghosts of my past medical problems to make these calls. It would be so great if I could get a recommendation from someone who has done this treatment already!

While I haven’t shared anything new or exciting today, I hope you take comfort in knowing you’re not the only one who struggles and feels overwhelmed with making medical decisions, researching, and choosing new practitioners and treatments. You’re definitely not! Meanwhile, please let me know if you or someone you know has tried either of these treatments – I’d love to hear about your/their experiences!

On a side note, I took the photo above from a mountaintop recently. I can’t hike up a mountain, but thankfully there are a few near me with roads we can drive up. They close for the winter, but right now it’s a gorgeous day trip and definitely worth the effort.


Discovering Section 8 changes by word of mouth

March 27, 2024

It started with a message from a friend, asking what I knew about the situation. This was the first I’d heard of it. My friend heard about it from a friend. That friend of my friend heard about it from a friend of hers. The news spread, and we scrambled to learn the details, and how it would affect us. The news? The federal government is changing Section 8 housing voucher requirements this year. Today, two months later, I have more information, but none of the housing authorities in my area that I’ve checked have notified their tenants. Word is still spreading by word of mouth. And it’s spreading slowly.

I don’t want anyone to panic, but I also don’t want folks left in the dark. So I’m going to share what I know so far.

First, let’s take a moment to consider just how shitty this is. The federal Department of Housing and Urban Development (HUD) apparently changed the rules back in 2016, and the change was to take effect in 2024. That gave everyone 8 years to get their shit together. But they didn’t. The director of my housing authority told me that she only recently received information about this, and is still waiting for even more details. WTF? There are millions of people on Section 8. You’d think HUD would have a plan for this, but apparently, they don’t. Or they do, but it’s not a great one. Because every housing authority should really have gotten this information in enough time to formulate plans.

Section 8 is a federal program in the U.S. to help low income folks with housing. It’s a federal program, but it is administered by local housing authorities, and each can have slightly different rules. For example, one town might require housing inspections yearly while another could require them twice a year. I liked living in my former city, but the rental limits allowed on those Section 8 vouchers were unrealistically low. A big reason I moved to my current town was because they had much more realistic voucher limits – with effort, I could actually find a 1-bedroom apartment that met their requirements. No amount of effort would have made it work in my former city. These kinds of allowed differences are going to be very important for the current situation.

So far, I have learned about 3 changes, but my impression is that there could be more coming. Of course, it’s hard to tell, given the lack of transparency or notifications. I have spoken with my state and U.S. rep’s offices (and I spoke to my state rep directly), my town’s social worker, and the executive director of my housing authority. The representative’s offices didn’t even know about this until I informed them! One even told me that there is no asset limit, and sent me a pdf with that statement. I had to remind him that this is something new in 2024, and point out that the pdf he sent me was dated 2020. That’s how horrible the communication is.

The first change is an asset limit. Until now, there hasn’t been any asset limit. The new asset limit is $100,000. As the head of my housing authority said, to some people this is a huge amount of money and to others it’s very little. My understanding is that folks with more than $100,000 in assets will not be eligible for a first-time voucher. For folks who already have a voucher, it is up to their individual housing authority! Yes, that’s right, one town might enforce this new rule and the neighboring town might not. And it’s just down to luck whether your city/town enforces it or not. Just like whether your city/town requires one or two housing inspections per year. And while some housing authorities have already made decisions about this, others have not. Either way, there’s still a chance to say something. I’ll get to that in a moment.

The second change has to do with medical deductions. I spend a fair amount on medical practitioners, equipment, tests, and treatments that aren’t covered by insurance. This reduces my reported income, which in turn reduces my rent. Apparently, this is going to be changing. Unfortunately, I learned about this on the phone, like with all of the other information, because nothing is in writing yet. And I’m not sure I understood. It sounded like the minimum amount of medical expenses that would count is currently $4000, and that would be going up to $8000. That would be a huge problem for a lot of people! But again, I’m not 100% sure about this, so please check for yourself (once they actually know what they’re doing, that is.)

The third change seems like a good, but strange, one. Current voucher holders will be asked if their income is under a certain amount. On the phone, I couldn’t tell if she said $15,000 or $50,000. I’m guessing the former, but I’m not certain. If they say yes, then they won’t need to send in proof.

Apparently, these changes are meant to decrease the paperwork that housing authorities are dealing with. I can see how this would be the case. If someone says they earn under, say, $15,000, and based on their initial paperwork this seems likely, then the housing authority won’t need to go to so much trouble. If the minimum amount of medical expenses to count is doubled then fewer people with bother to submit receipts. If assets of over $100,000 knock people out of the program, then a quick asset check will take care of things and there will be no need for income verification. Yup, that part makes sense.

The problem is the human toll. HUD says they want to reduce homelessness. That’s a good goal. But these measures won’t do that! Let’s say I had $150,000 in assets. That would kick me off my voucher in some towns. In my case, without the voucher, my rent would go up $2000 in my current “affordable housing” apartment. Maybe I could find someplace cheaper to live, but the options are very limited, especially because I need a home without stairs. I would need to get a roommate, but then the chances are that they would eat gluten and I would get a lot sicker. A friend is currently looking for an apartment with a roommate and even then, her budget (which is $1100 more than I currently pay) is making that very difficult. Still, let’s say I get a roommate (a bad idea!) and only pay another $1100 per month. In three years and two months, I’ll be under the asset limit. If I pay the extra $2000 to stay in my current apartment, I’ll be under the limit in under two years. The problem is that I’ll need to reapply for Section 8. In my area, the wait lists are 10 years long. In other areas, the waitlists are closed altogether. In my current home, that $150,000 in assets would be gone in under 6 years, long before I’d be likely to get another voucher. Then what?!?

Now, I want to state here that I am very privileged, and I am grateful for it, while also feeling horrible that so many others are not. First, my housing authority is not implementing the asset limit which, yes, would cause me to lose my voucher. At least, this is what they say. I’ll feel better when I see it in writing. And second, my parents are able to help me financially. While they can’t cover all of my bills, they can give me enough to make things work. And as a last result, I could move in with them. This isn’t a great option, though, because (1) none of us would like it (2) their home has stairs to get in and the guest room is on the second floor (3) they eat a lot of gluten foods and wouldn’t stop if I moved in. Still, at least I wouldn’t be homeless, like so many others will be.

Now, if HUD really wants to reduce homelessness, you know what they could do? They could offer more vouchers! There’s obviously a need for more vouchers when wait lists are so long. What they should not do is kick people out of the program. These are folks who are saving up for a house, using their funds to cover medical expenses, paying off debts, and more. Taking away their housing vouchers doesn’t mean they’ll land on their feet. It will only perpetuate the cycle.

If you have a Section 8 voucher, there is one thing you can do: speak up! It seems that housing authorities are required to have a 90-day public comment period before instituting major changes like these. Few people go to these meetings or send in comments, so the ones that do speak up are heard even louder. Speaking up doesn’t mean the housing boards will listen, but it’s worth a try! Call your local housing authority and ask then their public comment period will start and how you can best comment. Attend their meetings. Make your voice heard!

Of course, the other thing we need to do is to elect more politicians at all levels who work to help low-income and disabled folks – I mean politicians who actually help us, and don’t just implement these kinds of policies (or appoint people who implement these kinds of policies) that might look nice on paper but which actually harm a lot of people. Low-income and disabled people are blamed for so many of society’s ills. We’re convenient scape-goats. But those problems aren’t our fault, and taking away our lifelines won’t improve anyone else’s lives. We need people who will fight for us, not against us.

Before I leave, one last thought: please share this. It is disgraceful that this isn’t being talked about. The only article I have seen came the National Low Income Housing Coalition. No major news outlets are discussing it, housing authorities (at least in my area) aren’t putting out statements, and even our politicians don’t know about it. I don’t want someone to get a letter in the mail letting them know they’ll be losing their voucher in just a few months. Or that their medical expenses will no longer count as deductions. That won’t be enough time for people to make arrangements, and the emotion turmoil will be so much worse. People have a right to know that they might be facing these changes. I rarely ask you to post my blog posts to social media or to share them with friends, but I think this is one case where it’s worth asking. We need to let people know what’s coming so they can prepare.

If you have more details about this situation, please comment below or email me! I want to have as much information as possible. I’ll update this post with anything I learn.


What shopping carts show us about capitalistic ableism

December 31, 2023

Well that was a surprise: my last post was over 5 months ago, and in that post I said I would continue writing, but then, well, chronic illness was its usual pain in the ass and then some. Still, better late than never, right?

I said in that post that I was dealing with a lot of fatigue because my medications were off and I was waiting to see a new doctor. Well, that new doctor ran a lot of tests; I thought she went overboard, but I’m so glad she ran them! Not only were my medications off, but she found a couple of other issues, also. I’m getting treatments for both. One is long term and I’m slowly but surly getting better. The other should be temporary, and if my immune system was functioning the way it should, I’d be better by now. But it’s not, and I’m not. So instead I’m spending a lot of time resting. I’m not socializing with friends or doing fun things. But hopefully soon, in the next few months, that will get better, too. The fatigue has improved, but not enough, and over-exertion is a big issue.

Even with the extra health issues and the accompanying extra symptoms, I need to keep doing the basics of life, and that includes getting groceries. It was on a recent grocery trip that I felt fed up with the shopping cart system. I’m sure it’s different in different parts of the world, but where I am, the system sucks for disabled folks.

Let’s say you use a cart while you shop, and then you use it to bring your purchases to your car. What do you do with the cart after you unload everything? Where I am, there are usually two options: bring the cart back to the store’s entrance, or put it in one of the cart return areas in the parking lot. There are usually a couple of these in each parking aisle. This seems simple, but there are definitely problems.

Typically the parking spaces closest to the store entrance are marked as accessible parking. Then there are a few regular parking spaces. Then a cart return. Then more parking spaces and, depending on the size of the lot, there may be a second return farther down the aisle.

The most obvious problem is that some people don’t feel like walking to those cart drop-off areas. If they’re parked near the accessible parking spaces, which are bigger than most, then if one is empty, people will often leave carts there. Even if the spaces are taken, people will often leave carts in the marked off area next to the spaces, which then blocks many wheelchair users and others from enter or exiting their vehicles.

The problem that is apparently less obvious but shouldn’t be, is that disabled folks also need to return our carts. Let’s say I park in an accessible spot because I need to reduce the amount I must walk. By the time I get to my car I’m in pain and/or fatigued. Now I need to return my cart. Walking back to the store is too far. And walking all the way over to a cart return is also too far – if it weren’t, I could have parked over there to begin with!

Both of these problems could be solved by simply moving the cart returns closer to the accessible parking spots. Then we’d have accessible parking spots followed by cart returns followed by regular parking spots and then another cart return and finally more regular parking spots.

This solves both problems because disabled people would have an easier time returning our carts and non-disabled people who park nearby could leave their carts in the cart returns instead of in the accessible parking spaces.

This is where capitalism comes in, I would guess. Stores want customers. Most customers do not park in accessible parking. Most customers want to park close to the store. The stores do not want to take up the closer regular parking spots with cart returns. That isn’t an efficient use of space for their paying customers. Yes, it’s only a tiny extra distance for an abled person to walk. Yes, someone who has to return a cart would need to do extra walking either way, and this just changes the direction. But it feels like more effort for folks, and no one wants that. Apparently it’s better to cause a few people to expend a whole lot of effort than to cause a lot of people to expend a tiny amount of effort.

I’m curious what you think. Are parking lots in your area set up in this way? Have you experienced a better system? Am I missing something? I’d love to know!


Terrified that I won’t find a new doctor

March 17, 2023

I’ve written about this before, but then, that’s part of chronic illness, isn’t it? So many things recur because, after all, our health problems are chronic. Still, this is by far the biggest problem in my life at the moment, so it’s what I’m going to write about today.

The back story starts years ago, when I did my own research to learn why my thyroid treatment wasn’t working. It took a while to find a doctor who really knew how to treat me in a way that would actually improve my symptoms. When I finally found that doctor, I stuck with him.

Meanwhile, I was treating my adrenal insufficiency with supplements. I did my own research and worked with my naturopath. At first they helped, but then the company I used went out of business. I had to switch to a different brand and it was never as effective. After 7 years of supplements, my naturopath finally convinced me to do what my doctor had already been encouraging: hydrocortisone. I had resisted this course of action for a long time, but I finally gave in.

With the right thyroid treatment and the right adrenal treatment, I felt better than I had in years. It felt miraculous. For a short time, that is.

Fast forward to a year and a half ago, when my doctor urged me to go off the hydrocortisone for six weeks in order to run some tests. It was hell. In theory, after the tests I should have gone back on the same dose and felt fine again. For some reason, though, that didn’t work. We raised the dose. And then my doctor retired.

I found a new doctor, and I thought he might be ok, but at our last visit I changed my mind. First he said I’m hyperthyroid based on just the TSH, without considering the Free T4. Also, he doesn’t even run a Free T3! But even worse, when I described some adrenal hormone-related issues I have, he said they’re signs of being hyperthyroid. Which makes no sense. I’ve had these episodes for years, even when I was hypothyroid. Even though I only get these episodes once every week or two at most. Even though they stopped when I got on the right dose of hydrocortisone. They recently returned, which is why I’ve questioned whether I need to change my dose. But he insists they’re proof that I’m hyperthyroid. What?!?

Ok, so maybe I need a new doctor. But I could have lived with that. Then he announced changes to his medical practice that would end up costing me thousands of dollars a year. Literally. And I’m already not happy with him. So now I feel that I need someone else. But…. what if I can’t find anyone else?

I’ve been looking. So far, I’m not finding a lot of options, and the ones I do find don’t take my insurance. I don’t even know yet if they are taking on new patients. Or if they have the knowledge necessary for my kind of complicated case. Or if I’d like them.

My PCP won’t prescribe hydrocortisone at all, and her way of managing thyroid conditions would send me back to where I was at more than a dozen years ago. I’m terrified. It took so many years for me to get to a level of health where I felt that I could more or less function, and I worry that could be snatched away from me. Not only do I need these medications to live, I need them to enjoy life. Even with these meds I can’t do a lot of things I want to do: go dancing, hike, spend all day doing fun activities, keep up with my nieces and nephews, keep up with my own 70-something mother, attend a wedding without needing days afterwards to rest. Still, they allow me to do a lot more than I otherwise could. And I could lose them.

I’m terrified. There simply aren’t many doctors around, regardless of insurance coverage, who do the types of treatment I need. What happened? I feel like there were more options a dozen years ago, but the numbers have been shrinking and patients are left in the lurch.

I don’t know what to do. Every time I think about calling more pharmacies to ask for names of doctors, checking more doctors’ websites, calling more medical offices, I freeze up. Avoiding the issue won’t fix it, and only causes the entire situation to weigh on me and add to my stress levels – and added stress is especially bad for someone with adrenal issues that aren’t being properly treated!

Right now I’m going to take a few deep breaths and make some more calls. It only takes one, right? Just that one special doctor. Still, I’m scared. Because I know it’s possible I won’t find them. And then what?