Tag Archives: pain

A Lasting Message from a Warrior

Warning: this article is about, and includes, the public farewell blog post of a fellow warrior before undergoing euthanasia. It is gut-wrenching and very difficult to read without an emotional storm and some serious understanding. This article has the link to Anne’s article at the bottom.

Why am I sharing it? 

Because it is a real issue that occurs in our community way more often then people like to discuss or think about. Anne also has a message that needs to get out to warriors, those that love us, those that want to help us, and those that are supposed to help us (the professionals who have the job of helping discover the why, how, and ins and outs of our conditions as well as ways to help us live with them until we can cure them).

Some people think we fake our issues or overplay them. Some people want to remove different avenues of relief and even research.  Some people do not understand the immense and heavy feelings of being trapped and tortured in one’s own body day after day. Even more, some think that those who are fighting, writing, begging for help and relief can’t be doing that bad if they have the strength and ability to be vocal (I have faced this discrimination with my own writings and websites). This is, by no means, the case.
It doesn’t matter if you can blog daily or make calls or if you are hiding in your bed. It doesn’t matter if you look like a movie star or a complete mess. It doesn’t matter if you are on medication or not, use therapy or not, use CBD or THC,  opiates, or if you are unable to have any medical care or are able to have access to any care.

You are a warrior. Our battle has no clear end. The fields we fight on are shrouded in a fog of unknowing and filled with traps and pitfalls. We may be up or we may be down. We can be crawling on our bellies, slowing down, or rising to our feet to press forward again. Some of us have contemplated the days where we can’t go on. Some have had days where they have taken the first of their last steps. And it is a reality of living with medical conditions that debilitate us in ways that many may not understand.

Suicide is a touchy topic. Euthanasia, the legal practice of assisted suicide, is becoming more prominent for much younger people due to certain illnesses that make life unbearable to endure. Those who take such routes are living in excruciating pain and are no longer able to function in any semblance of normalcy. It is a process that requires a lot of thought and consideration and is not taken lightly.

About Anne:

Anne Ortegren was a Swedish activist for ME/CFS. She suffered from the diseases as well as a multitude of other severely debilitating issues. Recently, Anne released a blog post, her final letter to the world, before undergoing self-euthanasia at a clinic in Sweden. The article linked below is written by a friend of hers and includes her final blog post. The friend and article writer had the letter edited with the help of someone knowledgeable on the psychology of suicides to make sure some of the wording didn’t spawn more suicides. It is something that occurs sometimes and is a worry for anyone who shares this kind of content. Anne explains her situation and story best and further information is in her article.

A note on the subject:

Although there are situations where one may be at such a critical and unbearable position in their life, it is highly encouraged and begged that you seek advice from places and people that can help before making any kind of decision if you have reached a point where you are considering suicide. Please, please, talk to someone and discuss your thoughts and decisions.

Suicide crisis lines in the U.S.

National Suicide Prevention Lifeline – Suicide prevention telephone hotline funded by the U.S. government. Provides free, 24-hour assistance. 1-800-273-TALK (8255). (National Suicide Prevention Lifeline)

IMAlive – Toll-free telephone number offering 24-hour suicide crisis support. 1-800-SUICIDE (784-2433). (Kristin Brooks Hope Center)

The Trevor Project – Crisis intervention and suicide prevention services for lesbian, gay, bisexual, transgender, and questioning (LGBTQ) youth. Includes a 24/7 hotline: 1-866-488-7386.

SAMHSA’s National Helpline – Free, confidential 24/7 helpline information service for substance abuse and mental health treatment referral. 1-800-662-HELP (4357). (SAHMSA)

txt4life – Suicide prevention resource for residents of Minnesota. Text the word “LIFE” to 61222 to be connected to a trained counselor. (txt4life.org)

Suicide crisis lines worldwide

Crisis Centers in Canada – Locate suicide crisis centers in Canada by province. (Canadian Association for Suicide Prevention)

Befrienders Worldwide – International suicide prevention organization connects people to crisis hotlines in their country.

IASP – Find crisis centers and helplines around the world. (International Association for Suicide Prevention).

International Suicide Hotlines – Find a helpline in different countries around the world. (Suicide.org)

Samaritans UK – 24-hour suicide support for people in the UK and Republic of Ireland (call 116 123). (Samaritans)

Lifeline Australia – 24-hour suicide crisis support service at 13 11 14. (Lifeline Australia)

 

Click below for the last but lasting message of a fellow warrior. Farewell, Anne. May you hurt no more and finally find peace.

“Farewell – A Last Post from Anne Ortegren”

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Pill Head, Pot Head, New Age Health Nut, and let me tell you what really works….

Does the title sound horrible? Was it mean? Did I offend anyone? Why? Who cares? Do you use capsulated or pill forms of medication? Do you utilize marijuana? Yoga? Acupuncture? Meditation? Diet and Exercise? Religion? What do you do to control your health issues and conditions, manage your life, and function in any capacity?

Guess what…..it is none of my business. It really isn’t. Does it work? Does it help? If it does, then have at it. If it doesn’t, then you may need to make a change. But here is the crux of the matter, it is no one’s business but your own.

Now, that will cause two reactions. Either “Damn Right!” or “But it might help you!” If it is the first one, I might ask what you are doing and how it helps, or not. If I do, you get to decide if you answer it or not. If you answered the second one, you may be part of the problem. But one thing at a time here.

Let’s start with the biggest one I see on support groups and websites and everywhere anymore and that is the lovely “opioid epidemic.” I feel I must make a clarification about this before I move on. The numbers used to represent the casualties of the opioid epidemic include heroin uses and overdoses, illegal obtained medication uses and overdoses, natural and accidental deaths of anyone with opioids in their system, and any death that can be connected to an “opioid-related” issue (whatever that is).  That being said, the majority (between 60-89%, depending on what you are reading) are, in fact, illegal drug overdoses. Not prescription drug overdoses. Not even illegal obtained prescription overdoses.

Now that we have that wonderfully over-used phrase cleared up, let’s move on to another aspect. Addiction versus dependence. Addiction is when you have a psychological need for something, anything. It is a falsely created craving that causes your body to want something due to the chemical expectancy (whether the item is the chemical or it is the chemical your brain releases upon using/experiencing the thing). Dependency is when you have a physical need for something. This is when your body has a physical need for something in order to properly function. Now, these terms have a gray area, as some medications can cause a dependency that is actually more of an addiction than a necessary need and some habits are addictive and you gain a dependency on that habit to fulfill a mental function or reaction in order to move past the need. Patients who use medications in order to function are dependent, not addicted. The majority, by a lot, of patients who take medication strictly because they are addicted to the chemical response is a hell of a lot lower than people think.

For someone who has never had a level of pain that necessitates a medication to dull it enough to function, the idea of using something that can often make your average person lethargic, “out of it,” or somehow not in a normal state is not understandable. What they do not realize is we who have a level of pain requiring pharmaceutical assistance have usually started at the bottom of the pain relief ladder and worked up to something strong enough to dull the pain enough to function. We didn’t suddenly start taking ridiculous amounts of morphine to feel good. In fact, many of us aren’t on morphine and probably don’t like it. But I can tell you that I miss having my Percocet prescription. I have no insurance or medication right now so flares and bad pain days force me to lay in bed, wiggling around, crying but trying not to cry, and begging for something, anything to make it stop. I want to die on those days. I am lucky if some over the counter nighttime med or allergy med can knock me out until the worse of it passes. That or I have to go to the E.R. But when I was on Percocet, you would not know if I was on it unless I told you I was on it. If anything, the only clue was that I was doing more than I usually did. The pain would be low enough that I could clean, work, cook, and function. Sometimes too much. And this is true for a huge percent of the people on pain medication because of a condition. Not only that, those on something strong enough to make them seem out of it probably have a condition that would have put them in the hospital, if not led to something suicidal, and probably are ok with being a bit high in order to not want to kill themselves. Who are you to judge?

Next up: Marijuana/Cannabis. Miracle drug? No. Useful for a lot of medical problems? Yes. Will it replace pain medication? No, not for people with serious injuries and neurological issues. Will it help lower the need for some medications? Probably. There are so many types and strains and ways to use Marijuana/Cannabis that the idea of someone using it means nothing. High THC and yeah, they can get high. High CBD means it is helping with medical issues and causes little to no high. I wrote an article on the subject HERE if you would like to read more. But people who use it should enjoy their benefits and not try and tell others that it will help them unless you are a doctor, know their medical history, and know for a fact that it absolutely will benefit them and not cause them any issues….and all of this is probably not true so stop telling people to smoke weed and throw away the pills. You have know idea how ironically idiotic you sound. It works for some, not others, and the effects vary from the strain and mechanism of use as well as the person, their medical issues, medications, and chemistry.

Moving on. Yoga, acupuncture, meditation, essential oils, diets, and whatever random pill or powder you were talked into buying that you believe works………good for you. Now stop. I have to say, I am not sure if the anti-pills, anti-weed, or the people that push any alternative cure/therapy/gimmick on you are worse. I really don’t. And I am not saying that yoga or acupuncture does not work. For some things, they can be useful for. Essential oils are great for topical uses and aromatherapy, but it isn’t going to do anything for bones, muscles (with the exception of rubs and massage oils for light muscular pains), or the nervous system. I am all about my essential oils, but they are not going to heal my screwed up spine or Celiac Disease or the huge list of other problems. So yes, some uses, but not a cure-all.

Dietary supplements, powders, pills, shakes, cleansers, detox, and such things are a scam. I am sorry, but they are. Research the information on a legitimate site and look for my upcoming article but that stuff is a money making scheme that you have bought into. The claims they make? All crap. Seriously. I am a ghostwriter. Those companies hire off the job boards I view for people with anything over a Bachelor’s degree to get paid $100 or more to claim the stuff works. They are not FDA monitored. They do not have to list what is actually in the product (most contain high amounts of caffeine even if they say caffeine free, and many contain dangerous supplements). They pay people for testimonials and for “Doctor says…” So just stop. You like that stuff, good for you but keep it to yourself. It’s dangerous. And for the people with any medical/health issue, many of them are absolutely deadly. So stop. For real.

Diet and exercise is my last point and is so because it is very subjective. I am not in a wheelchair currently. I have a cane but do not use it and should, I fall all the damn time. I look “normal.” My stomach is a map of scars because my internal organs, from my esophagus to my anus and much in between, has been removed, rebuilt, or operated on. My spine has severe damage, healed somewhat but incorrectly, and one day it will be done for good. Exercise is absolutely out of the question for me. I was removed fro physical therapy due to insurance issues and their fear that I would end up paralyzed by the slightest jar to my spine or hospitalized due to damage to my organs. I can’t exercise. Many, many people can’t. If you can, good for you, but don’t guilt someone who can’t physically do something. Diets are just as bad. I can’t have anything gassy, acidic, carbonated, fibrous, or gluten. I am iron intolerant and iron deficient. My best diet, as confirmed by my docs, high in medium rare to rare red meat, high vitamin rich foods, fruits, dairy, and some vegetables. I can’t and don’t want to be a vegetarian or vegan. If I eat gluten I can end up in the hospital, as few as 5ppm causes my autoimmune disease to kick in. I have reasons for my diet. Now, helping someone understand the ups and downs of a diet is fine. Suggesting they try one is okay. If they say no, cool, leave it at that. You do not know their deficiencies, dietary needs, medications, and conditions (not to mention their budget), so don’t diet shame either. Stop it.

I realize, at some point, I went from telling you to tell other people to stop judging to tell you to stop judging. I apologize for that but I suppose it is habit. The medication and cannabis are something often openly talked about and accepted in the chronic pain world. The dietary supplements, exercise, and diet issues are something I see people in chronic pain and conditions forums pushing on other patients. So, I guess that is why I changed my wording. I don’t mean it at you, necessarily, unless you are one of those people. But if you see people like that, feel free to point them this way. Tell them to chill out.

We are constantly being judged, misjudged, evaluated, ignored, guilted, and so many other adjectives. Take it in stride or do what I did, I left a lot of groups and pages. I have enough problems and don’t need to here every professional Facebooker try to tell me in five minutes off of the glance at what is public on my profile something that will change the issues I have lived decades with. That doesn’t happen. Maybe if it was Dr. House or something, but like I said, that doesn’t happen. Often it is either a sense of entitlement, boredom, anger, frustration or just plain old idiocy that make these people say what they do. Do your researcher. You know my way of it. Check Mayo, John Hopkins, NIH, or some other legitimate site. Don’t use blogs (even mine except the ones with the little links to the big guys with the research), “natural” sites, sites that are owned or operated by the company or group you want information from, or a Facebook post as a legitimate source of information.

You know you better than anyone else. You decide what others know about you. You decide what you share and what you do not. That is your freedom and choice and you should use it. Don’t let people bully or guilt you into thinking what works for you is bad. They don’t know. They don’t. You know. Even if it is bad, you know. So that is my inspirational/rant on the topic of managing your stuff. You do you, and what you think is best for you.