A Family Member’s Response.

After reading your email, I just don’t see how your “treatment” has led you any where but down and out.  Your list of food and supplements are far more expensive than any working person can buy on a daily basis.

You haven’t seen a “traditional” doctor for 3 yrs or more.  And I’m not a supporter of anyone using weed as a treatment.  It will NOT help anyone seeking a cure, it may dull the pain…..but I’m not sure on that one either.  In the end you are still sick.

Now you need to do the work to get you back into the normal medical system and work with in that system for your future well fare.  Your way has not come to a workable end for you.  It has depleted and used up all of your time, talents and income. It’s taken you 3 years for it to come to this, now change course and bring yourself back to the surface.

My sister recently suggested that I send out an email blast to my mom’s side of the family to tell them what’s going on and to ask for help.  Since I have started flaring the last month or so, probably due to my increasingly poor diet and the stress of my situation and looming homelessness due to having expended all my personal resources on out-of-state lodging and treatment with medical cannabis, she thought I needed to ask for help buying supplements to boost my health and recover my energy and temporary assistance with living expenses.  From there, I don’t know what she had in mind except that without health and energy, there is no way I would be able to do anything and I very shortly will need to make a change as I will be unable to continue paying rent in a cannabis legal state.

For 2 days I received no replies whatsoever to my correspondence.  Today, this came.  This is from my mom’s sister, who is usually the spokesperson of the family so I assume this is their collective response.  I have not responded yet, and I may never, because what is there to say?  Let’s take it bit by bit.

After reading your email, I just don’t see how your “treatment” has led you any where but down and out.  Your list of food and supplements are far more expensive than any working person can buy on a daily basis.

I “just don’t see how” conventional treatment would have led me elsewhere, considering that I was paying out-of-pocket for conventional treatments too, and I was having terrible side effects and was getting progressively worse.  Out of utter desperation, I would have done anything to get relief from the unrelenting agony of un- and undertreated Crohn’s, and I was being a fully compliant patient and was willing to take the next step and try the extremely toxic infusions that would decimate my immune system and cause opportunistic infections and cancer.  But that plan was thwarted when the doctors who were prescribing the infusion treatment fired me once I was accepted for Medicaid because they only took private insurance or self-pay.  And the first thing Medicaid did was to deny the conventional treatment I was already on!  Not that it was even working, or working well, as I was once again circling the drain.  Doing it “the right way” would have left me without any treatment at all and in and out of the hospital fighting with Medicaid to pay for extremely toxic treatments that often do not work at all, do not work well, or do not work for long to quell the hellish chronic pain, symptoms and damage of Crohn’s disease.

Her statement about the cost of my organic and fermented organic food and supplements is entirely correct.  Which is why we asked about a dozen people to chip in, so that the burden wouldn’t fall squarely on one or two people, and where I could be relieved of the burden I have carried for 3 years, alone.  And so far, not a single person has contributed.  Because what fun would that be when they can just state the obvious, make me feel like shit and complain?  I have a few complaints of my own, let me tell you, but so far I have kept them to myself.  Except when I wrote about them here.

We see more context for the “down and out” comment below.

You haven’t seen a “traditional” doctor for 3 yrs or more.  And I’m not a supporter of anyone using weed as a treatment.  It will NOT help anyone seeking a cure, it may dull the  pain…..but I’m not sure on that one either.  In the end you are still sick.

Crohn’s disease is incurable no matter what drugs you take, so I am not seeking a cure, but they obviously are.  MY FAMILY EXPECTS ME TO SEEK AND FIND A CURE FOR AN INCURABLE DISEASE.  Being that this is insane on its face, I don’t even know how to sanely respond to this expectation and let’s face it — this is at base what the issue really is.  Isn’t it?  My family wants and needs me to be cured because they do not have the emotional or financial (or mental and intellectual obviously) resources to deal with me being sick.  And as I have learned, once you become chronically and incurably ill, everything is suddenly all about everyone else and how everyone else can get their needs met, even if they “need” something insane or impossible like a cure for an incurable disease, and there is no energy or resources expended on meeting the sick person’s needs.  And guess who gets to fulfill everyone else’s “needs” to have their minds put at ease, to be assured that the impossible is possible, to be constantly updated about everything, to be continuously reassured that everything is fine even when it’s obviously not — the sick person gets to do that, that’s who.

The “down and out” comment, we now know, is “druggie” language and comes from her belief that marijuana is not a legitimate medication.  There is quite a lot of peer-reviewed medical research contradicting her belief, and cannabis is known to be especially effective for Crohn’s disease which is on the list of serious chronic illnesses for which medical cannabis is specifically indicated in a dozen states or more, but that doesn’t matter.  It’s people’s beliefs about chronic illness that are important, while the reality of chronic illness is not important at all.  She also “isn’t so sure” that cannabis is an effective pain reliever.  There is tons of peer-reviewed medical research showing otherwise.  It doesn’t matter.  She still believes it isn’t.

She is right about one thing — in the end, I am still sick.  But that’s not because of anything I have done or failed to do, that’s because Crohn’s disease is both incurable and progressive.  That means it’s a good day, a good plan and frankly good luck if you stay the same and don’t get worse.  Think about what that means.  And I actually feel about 50% better than I did and have managed to keep myself out of the hospital as a conventionally “untreated” Crohn’s patient for 3 entire years.  Why does no one see that as the treatment success it really is?  It’s because they don’t believe a 50% reduction in pain, symptoms and disability — and zero emergencies — is a success with Crohn’s treatment even though objectively it absolutely is.  And my family’s beliefs are more real and more important than my own — and objective — reality.

And I never found that kind of relief with conventional treatments in the 2 entire years I was treating with prescription drugs.  As is so common with conventional treatments for Crohn’s and other autoimmune diseases, they either don’t work at all, don’t work well, or don’t work for long and after 2 years I had only gotten worse and was in fact being made extremely, extremely ill, whether it was from the progressive nature of the Crohn’s itself or the side-effects of the drugs or both.  And cannabis does what it does with no notable side effects.

Now you need to do the work to get you back into the normal medical system and work with in that system for your future well fare.  Your way has not come to a workable end for you.  It has depleted and used up all of your time, talents and income. It’s taken you 3 years for it to come to this, now change course and bring yourself back to the surface.

I’ve already said that I am at the end of my resources to deal with this disease, and that remains true whether I attempt to seek conventional treatment at this point or not.  No one has offered to help me “get back into the normal medical system” and it’s not free is it?  Who is going to support me financially while I apply for Medicaid and get established with doctors, who will pay my co-pays and out of pocket expenses, who plans to drive me to my doctors’ appointments, who will sit and wait while I have invasive procedures and tests and drive me home afterwards, who will take care of me when I eventually need surgery because I can no longer control my symptoms?  Many if not most Crohn’s patients do need surgery eventually, and all of them are required to submit to invasive tests that require anesthesia and therefore a guardian and a ride home.

And while I absolutely do not expect that anyone would be willing or able to manage that burden — nor have I ever asked or suggested it — she does not even think to address the extensive costs and burdens of conventional treatment and this says quite a lot.  Here, conventional treatment is expected to be a panacea, and this is magical thinking if I’ve ever seen it.  Completely removed from whether conventional treatment will even work to relieve my pain and symptoms, it is not thought to have any costs associated with it at all, not in time, money, favors, physical caretaking, side-effects and iatrogenic illness and injuries (including medical mistakes) nothing!  Conventional treatment is the miracle everyone needs in this situation — I need it to (somehow) cure me of being homeless and destitute, and they need me to be cured of my illness so that they don’t have to deal with the problem of ME and of me being sick anymore.  No one ever says exactly how that’s expected to happen, just that it is.  This kind of wishful and magical thinking is a waste of a sick person’s time, energy and sanity to deal with but everyone demands that sick people entertain friends’ and family members’ ridiculous fantasies because doing so makes the well people feel better.

The stress of dealing with people who are not living in a reality-based world, and who think nothing of victim-blaming, haranguing and egregiously wasting time certainly doesn’t heal and can even make sick people even sicker, but as I said, once you become chronically ill it’s now your job as a patient to nurse your friends’ and families’ wounds, and to make them feel better about your situation and theirs, where they are unwilling and often quite unable to help.  I understand that having someone you care about fall ill is very stressful and makes the cracks in family and social safety nets apparent and that this is frightening.  But there are in fact substantial cracks in the social safety net and trying-like-hell-to-remain-middle-class people seem completely unaware of that, although their rather insane and life-long efforts to avoid falling away from their class and away from their station suggests they might be aware of it on some level.  If they aren’t, what exactly are they running from?

And in my own case, I knew from a young age that my “family safety net” was all holes and no net, which is why I tried so hard to be “successful” in the first place — I knew since I was a child that if I ever needed anything from these people that they would not be able to help.  How funny that instead of just admitting that they are too poor, overextended or afraid for their own futures to do anything extra for anyone, they blame me and act as if I had just done something differently their help would be easily and readily available towards a more tasteful pursuit, or against a different problem.  Assholes.

In the end, I am vindicated that I didn’t expect their help under any circumstance and I am relieved that I never misread the situation and willingly or ignorantly put myself into a situation in which I needed their help.  But being cut down in your prime by a disabling incurable and progressive disease is just bad luck.  There really isn’t anything I could’ve done to avoid it, but I ended up needing to ask them for help anyway.  Since Crohn’s disease is known to run in families, I honestly hope they are saving their money and not spending it on middle class trinketry because now that we know I have Crohn’s disease, every one of them is on notice that they are likely to end up with it too, especially the women and including the one who wrote me the above response to my situation when I reached out for help as an absolute last resort.  And I hope for their sakes that when that happens, there is someone or something there to help break their fall.

 

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