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Calculating Infinity / Solving Scenarios / Bedding Down in the Desert

I'm half asleep right now. But that also means I'm half awake. Let floweth thyne words, right?

So what comes next is my response to the comments received in my previous blog entry. My original stated dilemma had much to do with my future choosing, specifically, answering the following question: where shall I be living on April 1st?

If you choose not to read any further, please allow me to express my gratitude. Great input! Thank you all!


Hashing Out Options / Making Decisions -


Off-grid


For several reasons, moving up to Payson, Arizona is now off the table. I am just too unwell. If this was last October or even back in June, moving up into the mountainous terrain would be the most advantageous temporary solution.

But now, with a pronounced difficulty maintaining my weight, while suffering through daily bouts of gastrointestinal illness, plus, the ever- present pain issues…. well yeah, this option is not going to work.

Care Facility

The nursing home option is a last resort. If I become totally grounded in place, unable to get out of bed at all, then yes, the nursing home might be the way to go.

Also worth considering is that I was so angry and frustrated in the final months before leaving the nursing home (due to the restrictions and lack of sleep). If this is going to end for me, I do not want my final demise to take place there (if I can help it).

Sharing Space

I do not believe I am well enough for assisted living. Mainly, I would not be receiving much help from the limited number of staff (if it came down to that). And I also do not feel like contending with the stress and strain of having a stranger as a roommate (no privacy / consistent sleep), unless I absolutely have to be in that situation.

Baked Alive

It's more than likely I wouldn't be able to survive the summer in the garage environment, unless my tolerance for heat has improved exponentially.

Either way, I'm going to try to tough it out as long as I can in the garage environs, hoping I solve the pain and dieting issues on my own. As you know, based upon your own personal experiences, there's nobody and no entity out there willing to, or in any way, able to help. That's the unfortunate reality of our “illness” existence. If doctors can't solve the equation by running a battery of tests, blame is laid upon the patient. That's right, it's our fault - in effect, psychosomatic.

Upstairs

So if things continue as they are, I'll move upstairs into the condo interior and hope for the best. I guess really, I don't need the freedom to explore, or go outside. Me wanting to do those things is selfish. I've had my year of freedom - my year of roaming around the village, exploring, experiencing real life events. I should simply be grateful after having endured seven years being stuck on a mattress. It's a miracle that I somehow recovered to the extent that I did at the time.

On the Market

My wife and I had a discussion last week, and she agreed to have someone come out to evaluate the property, one of those real estate agencies that makes cash offers.

And if there's an offer made, something reasonable, something within $20,000 of the actual property value, then possibly some progress will be made towards having a more (semi)permanent solution in the coming months.

Additionally, we've discussed potential neighborhoods that would fall into a purchasing price range, and then also, be strategically located.

Money Maker/ Income

One downside right now is that she lost her job three weeks ago. I could provide details regarding this unfortunate event, but I shall spare you the details.

For what it's worth, I am already giving her $500 a month per rent, plus, I've given her $200 each month for utilities. Then also, she's earning additional money as a designated caregiver (for me), compensated monetarily two hours per day. So all is not lost.

Doctoring and Appointments

And then also, if necessary, it's possible that my seeing a doctor or a specialist could still be on the agenda with me living upstairs.

Generally speaking, transport used to charge me between $150 and $300 per trip (hospital/testing/other medical events), depending on the circumstances and exacting details of my itinerary. But now, I'd simply need someone to wheel me down the (difficult to navigate) stairs, in a manual wheelchair. At that point, I could hop in my power wheelchair and take it from there… assuming I'm still strong enough to do so.

So I need to figure out if there's any service that would help me get down the stairs. The wife is strong, works out, lifts weights several days per week, but there'd have to be an additional available person assisting me down the stairs.

Perhaps I could hire someone off of Craigslist - pay them $100 out of pocket (for their efforts).

Strength in Pain

Regarding the pain issues, I found an old prescription of codeine from 2017. So I think that'll somewhat tide me over for a while. Additionally, codeine slows down intestinal peristalsis, so perhaps that's why my diarrhea has diminished over the past two days. So that, in combination with the marijuana, should help.

Also, I've been doing my fair share of abdominal crunches. The idea? Strengthen my core in order to help relieve the internal pressure. So possibly, that is working, too. I've been doing these exercises for the past three weeks now, and the duration of the pain has been much shorter, for the most part. Instead of an hour or two consecutively, I can sometimes relieve the excruciating pain within 10 minutes by undulating properly. Or improperly. Hell, I don't know. The concept makes sense to me.

As an added bonus, smoking an occasional cigarette helps my mental state. It gives me something to look forward to, something that will calm me for a period of time, similar to meditating.

Oh, the other thing I may need to figure out is how to locate a trustworthy local drug dealer. My former band of homeless friends (over on 40th street) could help me in that effort, but I'd have to transport myself over to their neck of the woods. Neck of the desert? Hmmm….

So the idea is to get some Tylenol 3 (the one that has codeine in it) and simply utilize that drug, since codeine doesn't have many side effects or initiate any long-term damage. Based upon what I've read, it's the safest and simplest pain med out there - which is why I started taking it in the first place.

Intake

Lastly, I've been able to ingest approximately 1200 calories each of the past seven days. And that's a victory of sorts.

Joy of Joys

I got outside and into the sunshine for at least 30 minutes for three consecutive days, so that's an accomplishment of sorts. Beyond that, I'm mostly watching episodes of Judge Judy, and Rawhide. Sometimes I'll revisit various incarnations of Star Trek.

Rawhide is actually kind of cool. I never watched it before. One of the stars is Clint Eastwood. He's famous because he made a lot of cowboy movies where he didn't talk much, but he knew how to take care of himself with his Colt 45 or 44 Magnum or some distinguished variety of hand cannon. But the best part of the Rawhide episodes is the black and white cinematography - the high desert scenery, mountains and mesas and valleys and desert shrub and Joshua trees. And the plot is simple: manly men herding cattle, and driving them to market, all across the Great Western Lands. Entertaining stuff. Plus, I'm finding enjoyment learning the lingo.


That'll do it for now. I saw the doctor two days ago, and she's going to try to score me an abdominal MRI. Perhaps something good will come out of that. A diagnosis. Clues. Hope. You know, the usual suspects.


Take care,
Howard





Garage Life

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A picture of the picture I took during my last solo road trip excursion, Thanksgiving 2012 - Mojave Desert

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Comments

That sounds like a well thought through decision.
I had no idea you’d have to share room if you decided to go for the assisted living option.
I’m happy you’re the one helping your former wife out now, with the finances, in different ways! Yay you!
I do hope she’ll find herself a new job soon.

I’m happy for you to have made a decision.
And I’m happy you got out in the sun for a bit.
 
one of those real estate agencies that makes cash offers.

And if there's an offer made, something reasonable, something within $20,000 of the actual property value,
Be careful of those cash offer places. Some of them are scams where they get the title into their name but then don't actually ever pay off the bank loan so what happens is the owner is stuck with the debt but not holding rights to the property any longer.

Plus, even the legit ones won't offer you much at all...maybe about a 1/3 of the amount that the home is worth.

Anyway, just be careful.

Just putting in "home cash offer scam" brought up some results on YT. https://www.youtube.com/results?search_query=home+cash+offer+scams

:(
 
Hi Howard....I hope the sell of a condo will go OK.

One more thought for you: Have you ever checked into Palliative Care? True, they don't come all of the time, but may house you. It's worthwhile to check into everything....and ask the person who sees you the best way to get into these programs and everything they offer.

My former sister-in-law has recommended it for me, but we're only just now getting started with it in Dallas. Besides, I'm managing on my own...although I'm back on the doctors' appointments trek again. And testing of everything is another ruinous day. Feel better. Yours, Lenora
 
I'm so happy things are improving for you, @Howard.

I'm jumping around your page, taking it in in bits and pieces.

I dont reads like a normal any longer.

Howard, is off having a cigarette break, dont bother him!

This is so odd, I was even considering should I go try some nicotine patch, myself? (I'd want to micro dose that)

(meanwhile, speaking of micro dose...I got 18 "micro-doses" and from reading in a single study done maybe in Iran, I considered how to further micro the micro dose.) (all their placebo controls didn't quite work out, in their micro dose study)

Sorry to hear about the job. May other, better opportunities, arise.
 
Upstairs sounds like an improvement on the garage for the summer Howard - and with a caring person too! :) It won't be forever that you are stuck inside so hopefully in not too long, you will be able to get out and about again. A balcony is better than nothing at least. Does it get sun?

Relieved to hear you have a doctor who sounds like they are taking you seriously finally. An abdominal MRI is a start - could you ask them for gut motility tests and explain your pain and the difficulty with feeding formulas in a way that gets across just how much you have been suffering?

Hope you can continue to be able to improve your food and calorie intake - 1200 calories sounds very positive. As Andyguitar said, if you could even improve that a little more and somehow sustain it, maybe you could get rid of the J tube at some point which has caused you so much additional pain and difficulties.

I hope your wife finds a new job soon and that the moving plan works out well. As Judee says, really be careful of people trying to take advantage of you and your wife needing a quick sale. There are a lot of dodgy people out there sadly.

As always, love the photos and great to hear you managed to get out again in the sun.
 
The MRI didn't turn up anything.

Otherwise, I am hanging in there. I'm pushing about 1500 calories through my feeding tube, and then maybe 300 calories each day orally.

Either or both are making me very ill. So I'm not retaining much nutritional value, nor the calories.

I was hoping the combination of imodium, codeine (milking the last couple tablets I found), banana flakes, marijuana, rice, probiotics, and Gatorade would solve the problem, but no luck thus far.

The codeine is mainly intended to slow down my intestinal motility. So I've been asking around, trying to find a supplier. Drug dealer. Whatever. At least I have money to do so. Really, I need to take more than I am currently taking. Which is about 1/8 of a long ago expired tablet each day (Tylenol 3).

Beneficially, the pain isn't as bad when I am sick like this... Although losing additional weight is less than ideal.

Anyways, we're all sick and messed up, so I'm no different than any of you. I'm not special in any regard. I just write about things, seeking answers. Commiserating. That kind of thing. Nothing to see here.

The wife person is still being supportive. I'm hoping that holds out, but I'm sure she didn't expect to be taxed like this, again. It feels like 2010 all over again, the beginning of this entire illness for me - the constant and never ending intestinal distress. And of course, on her end, the helplessness. The stress and the strain.

Eh. Everybody suffers in proportion to, and based upon, their own personal wants and desires. I suppose I need to dial down on my own personal expectations.

So yeah, I need to reframe. Reconstruct. Lower my expectations. Stay in the moment.

Take care,
Howard
 
Howard, are there not drugs available from your doctor specifically intended to slow down gut motility if this helps you?

No need to answer, just thinking...

Hope the plan for getting out of the garage before the summer is still on.

Hugs x
 
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Thanks for the update, @Howard.

I hate it that you are still dealing with such horrific gastrointestinal distress. It's MADDENING to me no physician has taken it upon themselves to figure this out for you.

I'm okay. Sometimes I let my frustrations bleed through into my words. There are moments in each and every day where things are okay. But yes, just as it is the way with all of us, doctors typically do not take an interest outside of their comfort zone / existing knowledge base.

I hope you got some good things going on, at least every now and again. :)
 
Howard, are there not drugs available from your doctor specifically intended to slow down gut motility if this helps you?

No need to answer, just thinking...

Hope the plan for getting out of the garage before the summer is still on.

Hugs x

That's a great concept, except the problem being, I already have severe gastroparesis. So any slowing down complicates related matters. Or, perhaps I do not have gastroparesis. Maybe my intestines are merely distracted, lost in thought, like the rest of me.

It seems things are moving too swiftly through my colon, yet, bogging down in my small intestines. At least, that's what I suspect. The past couple days haven't been as bad, so maybe the banana flakes are kicking in, helping regulate my intestinal motility.

I was given a prescription for gabapentin, but I'm too damn scared to take it. It's supposed to help with nerve pain, but also has a plethora of side effects. After getting off of paxil years ago, I am fully unwilling to take any medications that alter brain chemistry. I don't need my brain altered. I don't think. LOL

And really, paxil could be the cause for this entire illness. No one knows the long-terms effects of taking these kinds of drugs, the ssris.

Thank you for checking in :)
 
This is so odd, I was even considering should I go try some nicotine patch, myself? (I'd want to micro dose that)

Nicotine is a strong drug. The only thing it's doing for me is that it helps mask the pain, on a temporary basis. Some of the time. But I deserve to be relatively pain-free occasionally. :)

Additionally, I don't have much to look forward to at this point. So, smoking and occasional cigarette satisfies that need. And then I feel bad about doing it. And then I stopped feeling bad when I realize suffering is less than ideal.

I have a lot of mental energy, but my body is simply not cooperating. My energy stores are diminished. My socialization is minimal. I'm sure you understand and can relate, to some degree.

I wish I could suggest something to ease your suffering.
 
I'm managing on my own...although I'm back on the doctors' appointments trek again.

Yes, I've been on that truck of late. Track. Trek. Sorry, I'm outside in the blinding sunlight and traffic is kind of noisy. I'm getting a little bit Sun baked right now, but I do require vitamin D.

By the way, I still use that sleep mask you purchased for me a couple of years ago. I use it every night. It's comforty smooth.

I'll have to ask about palliative care. I'm not familiar with how that works. Thank you. :)
 
Good day @Howard.

Oh, I'm so glad the mask is still helping you. Sometimes the smallest things can be exactly what we need, and other times a whole arsenal doesn't help.

I can't say that I like the idea of you being in the garage (still). Mrs. ex-Howard seems like a really good woman and it must be upsetting for her to see you in this situation. "Good Hearted Woman," right?

The doctors can't find out the cause of the gastroparesis? I really don't know the full story of how it came on. I've had intestinal problems myself but still can't imagine exactly where yours is or why. Did you have the ME before that started (and I realize that could be part of ME). Anyway, you sound down and forlorn and it makes me wonder about the beginning of it all.

I know you're tired and whether you're aware of it or not, living in the garage must be dragging you down. Tell us what we can do to help...just like before. I think most of us appreciate that - and I know I'd appreciate hearing from anyone who also needs help. ASK, please!!! (Although I won't supply guns or bullets.)

It's heating up now or soon will be (in Phoenix), so you're plans have to be more or less immediate. As much as you can, please tell us and for heaven's sake, Howard....take good care. I, for one, would like that above all. Think about asking for what you need. It's done all of the time, so that's quite acceptable. We just get locked into our way of thinking (solo) sometimes. It doesn't have to be that way. We'll put you on Tik Tok(sp?) if you aren't careful! Feel better, feel stronger. Yours, Lenora
 
But I deserve to be relatively pain-free occasionally. :)
Yes you do. No reason to feel guilty. Nicotine is a sacred herb.

I found some very rare nicotine plants hiding in a spot near the beach, where native Americans had carried the seeds to this one tiny spot, 100s of years ago. Ask for help from the herb.

I wish I could suggest something to ease your suffering.

I got one of my dreaded bouts of acute gastroperesis /viral flu reactivation?/ the Nightmare Tour....

Seven days is the classic duration of this floating surreal event.

I don't know what triggers this crap. But Crap it Is.

The only fun part is when I go manic. This happens, during states of near constant delirium which sometimes lift for small blocks of time.

Example: sobbing in the bottom of the shower stall because my housekeeper has brought me hot water and is pouring it on me and I don't hurt right now.

It's a borderline religious experience. Feeling this ill, and tiny moments of relief from the horror of it.
 
Here is a wild nicotine plant I got a shot of, while visiting a 2500 year old stone palace. In 2018: before The Worsening.
 

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I do hope she’ll find herself a new job soon.
Yes. She found a temp job that pays decently, and may lead to a permanent position. Sooo... she cannot purchase alternate housing until she has a permanent position. Three months? Maybe--

@Rufous McKinney

I'm sorry that you are struggling. Rather frustrating on all fronts. :-(
I miss taking a shower. Maybe some time this summer I'll be living somewhere accessible.

Cool plants! The nicotine helps more often than not. Obviously not healthy though. The idea is that this will be a temporary fixation.
 
As Judee says, really be careful of people trying to take advantage of you and your wife needing a quick sale. There are a lot of dodgy people out there sadly.

and @Judee

Yes. Those people are awful. They wouldn't up their offer, so the value loss would fall between 80 and 100k. The problem (in that regard) is that the wife simply doesn't want to deal with selling / buying aspects, thus, she'd rather lose money than go through the aggravation. I get it.
 
"Good Hearted Woman," right?

She is, yes. A good human being. But she's one of those types of people that doesn't always take care of herself, nor manage her own needs. I used to make the effort, trying to help her in that regard, but as it stands, each of us has to be full-on willing to make changes to our inner selves.

Did you have the ME before that started

The severe gastroparesis started well after becoming ill. My theory is that this entire illness is directly related to my lack of intestinal well being - having celiac, I suspect I am unable to absorb vitamin D in my gut (thus, sunlight being soooo important), and then possibly vagus nerve issues combined with having used an SSRI just prior to becoming ill (PAXIL). Also, SMA syndrome (superior mesenteric artery impingement) as a result of having lost so much weight (back when this began in 2018).

So those are my theories! HA!

Tell us what we can do to help...just like before.

I have income now, so I do not require assistance. Once I get into a safe comfortable place, I expect to improve. And then also, I REALLY miss socializing. Being able to relate to other humans helped a whole lot. I never realized how much I appreciated having a varied audience, others to keep me actively engaged, and to make it seem as though I truly matter. Helping others or entertaining or having emotionally deep discussions is imperative for me to experience some semblance of self-actualization.

Right now (outside of occasional interactions with the wife person), I am somewhat dead inside. I'm running on autopilot. There's no point in continuing this way, yet, I try to find some joy, succeeding every now and again. I'm just not physically capable of doing much. But there are likely clues amiss, solutions I am not yet finding. :)
 
@Howard....Hello. You're doing your best and I hope to hear of a good pay-off soon (not money, but the other things you need).

I'm sorry that your recent ex hasn't been able to find her way. You're right...we each have to want to do it, can't complain and blame others forever, and it takes a very long and deep trip inside to find that tiny spark that gives us a reason for living and being. What is, is. You may not ever have cancer; someone else may. I remember it well, obviously you do also.

I assume the condo is presently on the market. Could you go back to the nursing home until it sells? Having first floor access would make life so much easier.

Knowing that you're getting the money would/should make it that much easier for you to enter (at which time you lose it), but you have proof that you are ill and already qualified when you leave.. I know it's not ideal, and you may not sleep, but I so want to see you take care of yourself. Maybe time resting will enable you to roam the countryside in your wheelchair once again. Re-connect with all of your old friends...they'd be happy to see you, too.

The added bonus is getting your sunshine each day. So there are good reasons, and I know you've thought of everything very carefully. It's just that I know how the temps. in Phoenix can be in the summer. Like here, not conducive to being out in the midday hours. What are you thinking of doing? Keep moving forward, Howard, even if you're stalled for a bit of time. Yours, Lenora P.S. I hope the banana flakes are still working.
 
he cannot purchase alternate housing until she has a permanent position. Three months? Maybe--
Glad to hear a new gig is working out for your wife.

I"m considering trying a bit harder to launch Project Direct Sunlight on Skin, for 15 entire minutes.

You are always an inspiration, @Howard.

And I wish one of your friends could stop by for a little chat. Have you ever just invited one of them to stop by?

It seems you can do some socializing without being punished too badly, Thats at least something, within our little fun club.
 

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