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Doctors vs Google

I bet you didn’t know there was a war brewing and in some cases being actively fought between doctors and patients and Google. What is the fight over, you might ask? Let me explain because if you aren’t knee deep in chronic illness, battling symptoms that seem to crop up new every other day, and seeing more doctors than most have seen in a lifetime, you won’t understand.

The fight is three-fold. Doctors who feel that patients are looking up their symptoms and coming to them to validate a self-diagnosis. Patients who are looking to validate a self-diagnosis. And chronic patients who possibly know more about their illness than their doctors, who feel abandoned by their doctors to more and more medications because their doctor has run into a wall and no longer knows how to treat them. 

The advent of Google and innumerable medical sites that give information about thousands of diseases and illnesses, along with other sites and blogs that are dedicated to educating people about their illness have made huge differences in peoples lives. There are patients out there who have been blown off by the medical community, who could not find out what was wrong with them, who, with the information gleaned from these various sites, have been able to go to a specialist armed with this information and finally get a diagnosis and treatment. Doctors, to some extent, feel threatened. Signs like these are popping up in doctor offices everywhere. **

Google Doctor

It states that Google, and the sites it may take you to, shouldn’t be confused with a doctor’s vast knowledge built upon their education and their medical degree. Okay. I get that. I understand that getting your medical degree is hard work. I understand that there is a certain level of devotion required to the field which gives you the motivation to put in the time toward your education. However, when you possess all this vast knowledge, from degree to experience and you do not try to help a patient, let’s say by offering some kind of treatment or admitting that you’ve hit a dead end with them, and then directing them elsewhere, there’s a problem. Patients inherently want to trust doctors. What drives us to Google are doctors who shut us down, who tell us that they know best, as opposed to the person living with the disease and who simply aim to give us medication in order to “manage” the illness. Is it too much to strive for something more than being managed? Is it crazy to think that we might possibly get some semblance of our lives back? I don’t.

In no way am I trying to belittle a doctor’s work. I understand that there are people out there who try to out-smart the medical community, for perhaps their own gains. As a person living with chronic illness and pain, where much of my life is tied up to just trying to have any kind of normalcy in my life and just being able to live with as little pain as possible, the idea of someone trying to make it up is repulsive to me. The idea that someone seeking drugs would go to the hospital to fake an illness, while not surprising also repulses me and angers me. However, it helps to put the plight of doctors into some perspective for me. I don’t, however, believe that doctors should immediately condemn a patient for using Google until they’ve looked toward themselves first, for the problem.

In a lot of ways, I feel like the entire medical community is broken. This does not mean that there aren’t hospitals and doctors out there who do what is right, but with so many grievances from patients from prescription costs to doctors who’d prefer to give a terminal patient Tylenol to control their pain instead of an opioid because of this “opioid hysteria,” we have issues that seem insurmountable. A broken system where Big Pharma is reaping millions if not billions, and patients who are suffering from neglect from doctors who don’t want to admit they can’t solve a problem. I know these are huge accusations but I am not the first one to mention them and won’t be the last. I don’t have the answers either, but I am hoping someone out there will. In the meantime, Google is still my friend because educating myself on my illness means arming myself with valuable information that can help my doctor treat me. This is the only weapon I truly have in this war with chronic illness.

 

** I was sitting here drinking coffee this morning and BAM! I remembered I didn’t insert the image. That is Fibro brain for ya!

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Rant

I don’t often rant, but I had a rant on Twitter yesterday. Let me explain and set up the scene for you.

Yesterday, was my monthly appointment with my pain doctor. There’s a couple of things I can expect right off the bat when I go see him. First, he will be late. Not just 15-20 minutes late, but a couple of hours late. Though I was his first appointment at 9am, he was not even in the building yet. Second, the dialogue rarely changes. What I mean by that is for the 3 years and plus or so months that I’ve been seeing him, he’s been focused on one part of my body. He hasn’t diverged from that despite my even telling him that there’s more to my pain than that specific part. I’ve also written it down for him, outline style. Third, is that while I don’t believe he is unkind and I do believe he wants to help people, he has that arrogant, fatherly, I-know-best, way about him that makes me hesitant to speak to him any more about my pain. Typically, we go through the dialogue and I get me re-fill for medicine and go on my way. Yesterday was different.

After almost an hour and forty-five minutes or so, he came into the room, sat down with his laptop and began to go through the findings on my recent MRI report. Note here: I have had one other MRI report in the entire time frame I have been seeing him, but his explanation for why I needed the MRI and why he ordered it was because he needed to be able to show he has been looking for any changes in my spine to substantiate his reasons for giving me my medicine. Okay. That is fair and I had the MRI done. The findings were not much different than it was 3 years ago in terms of what is wrong with my spine, however, there was significant atrophy in my muscles and the spaces between discs. Again, this is not surprising for me because I have been mostly sedentary. I have been doing yoga, but it’s a more sedate yoga that is for stretching and relaxation rather than building core muscles or improving back muscles. I am in a lot of pain and anything more than that isn’t well tolerated, I’ve tried.

His behaviour in both words and mannerisms after I told him I was doing some yoga was disbelief. It set my teeth to grate against each other and my 19-year-old was in the room with me and could feel the stir of my anger. He asked me next how do I feel when I don’t take my pain medicine? I truly felt like this was a trick question. One of the things you learn upon going to a pain management doctor is the absolute way in which you should take your medicine. You don’t divert from the way it is prescribed. You don’t take more and you don’t take less. I was silent while he tapped on the keys of his laptop until he turned to face me expecting an answer. I said: “I imagine I would be in much more pain than I am already, and I would probably get a lot less sleep than I already do.” He nodded and then told me next that I would need aggressive physical therapy because in his opinion, this would make me feel 10x better. Also, he doesn’t think I need the cane. According to the MRI, there is no reason I should be using it. I said very readily that my reason for using it is not only because of my pain shooting down my leg but because I have a balance issue. I teeter when I walk and when I don’t use in my house, I often hit the walls in the hallway and corners of things. He gave me no possible reason for this and just moved on.

At this point, the visit was concluded with the direction to get in touch with the physical therapy and he would see me in a month where he would see how the physical therapy going for me. I managed to escape the office without throwing a fit because believe me, I was very close to an epic meltdown. When I got into the car, I lost it. All I could think of was how in the hell is physical therapy going to suddenly help me now when it didn’t help me 3 years ago? How is this suddenly you’re a-ha moment, when I went through more investigatory injections than I have fingers, two spinal stimulator trials and a sacroiliac joint fusion? I went through 6 weeks of physical therapy, where they could not get me beyond water exercises and the spine doctor declared the sacroiliac joint fusion [SIJF] necessary and now this is the miracle cure, that will have me running, jumping and walking again?

No. I truly believe that this is his end-of-the-rope response to me. He’s exhausted all ideas, and I have noticed in previous visits that he seemed at a loss why nothing he tried worked for me. I get it. In all fairness, I understand how frustrating it would be to try and try with a patient, but keep coming around to the same result. But I also don’t feel that he’s been looking at the big picture. Instead of looking at my entire body, and the entire problem that includes all my diagnoses, he’s insisted on focusing only on the small area of my back. He’s beat this problem to death and because he can’t fix it, I am now a lost cause, and well, physical therapy can’t hurt, right? Wrong. The physical therapy I endured prior to my SIJF was excruciating. The therapist decided on water therapy because her lightest touch brought me to sobbing. While physical therapy costs money and at three times a week for 5 weeks, I know I can’t afford it, I’m positive I couldn’t endure it either. But if I come back and say I haven’t gone I am almost certain that I might have my pain medicine terminated. Talk about a rock and a hard place.

I want doctors to do something radical. I want them to look at the bigger picture and not see me as a part. Though the practice of specialities has brought more focused knowledge of a subject to patients, it’s also brought a disconnection. My rheumatologist, cardiologist, neurologist, gastroenterologist and pain management doctor don’t communicate with one another. Each of them sees me through this keyhole, only seeing a small part of what is wrong. They all prescribe their medications and here I am, still in pain and still not feeling well but managed. It’s become all about management. The management of a life in pain and I’m pretty damned tired of it.

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You’re Not Really Disabled

There’s been a trend in my recent writing topics, that I can only define as WTF. I’m not being very eloquent about it, but there it is. WTF stretches a broad range of experiences that I’ve discussed both in my blog and for National Pain Report. One of my doctors telling me he doesn’t believe I need a cane, based on my MRI, but not offering me an explanation as to why I feel I need it because I’m unsteady on my feet, bumping into walls and my knee giving out on me. But it’s perfectly okay to shame me about using it and offer physical therapy as the Holy Grail of cures after three years of procedures and surgery. There’s also been the well-meaning “I hope you feel better,” that while well-meaning, becomes an irritation after you’ve explained your situation multiple times and are not truly heard. Something I haven’t written about but will be covered soon, that also falls into this, WTF feeling, is when you are made to feel as though you are faking your illness with those very people who are supposed to be taking care of you. I’m talking about the medical professionals in your own doctor office and hospital. Today, I’m discussing the very many ways that people (close to us as well as strangers) are in denial about our disability and aren’t afraid to tell us.

·       You’re not really disabled, you’re just fat: Yes, this happens. I have heard it time and time again and it makes me livid. I’ve never been explicitly told this, but I don’t think it matters. In my case, when I was just beginning this chronic journey and trying to figure out what was wrong, my first place to start was my PCP. Instead of sending me for tests or at least another doctor if they didn’t know what was wrong, I was given diuretics for my swollen fingers and forced to speak to a dietician who told me losing weight would be best for me and I should eat from smaller plates. Yes, she actually said that. My experience is a fraction of what people out there experience. I’ve heard of a woman who did not look obviously disabled, parking in a disability parking spot and when she returned, finding a note on her car saying that she didn’t actually need that spot because “she was just fat,” and she was taking spots from “people who actually needed them.”

·       Your disability doesn’t look like mine: This problem isn’t just among the -abled, it’s pervasive everywhere. The basic idea is that because your disability doesn’t look like mine, then you must not actually be disabled. This can be with anything, and I guess it’s because we are judging the progression of the disease or the severity of it through other people. The thing is, we are all unique creatures. Just because I have fibromyalgia and my neighbor has fibromyalgia, and we’ve both been suffering for seven years but I’m younger than her by ten years and use a mobility aid, doesn’t mean I’m not disabled or I am exaggerating my illness. I feel it is hurtful to make those insinuations about someone because we don’t know their entire medical history, nor is it any of our business. We should be supporting one another, not becoming part of this culture of undermining those who are chronically ill/pain. We have enough people doubting us, we don’t need more.

·       You aren’t disabled unless you are using a mobility aid: Almost contrary to my thoughts above, is the idea that you aren’t disabled unless you are using a walker or cane or wheelchair. I don’t know if this thought comes from the way the disability icon is drawn, with the figure in the wheelchair, but it is something even I had a bit of difficulty working my head around when I began using a cane and received a placard. People do not realize the wealth of issues that can prompt usage of a disability placard or identifying as disabled. A cane doesn’t make you disabled. Your disability makes you disabled. PTSD is invisible and the person can run and jump without issue, but needs the disability placard to get in and out of a facility quickly. There are many illnesses and many who have chronic pain but do not use a mobility aid, who are disabled but you would not see. Disability is not something you can necessarily see and society should understand that.

·       You’re not really disabled; you just don’t want to work: This has got to be one of my favorite misconceptions. While I will concede that there are some out there who would use a fake or exaggerated illness to get out of working, I don’t believe that the majority of us do this. Working compromises so much of our identity and is so important to our ability to survive and just support ourselves, that I believe most people who cannot work, truly can’t work. There is a feeling of guilt when a person comes to the decision that they can no longer work and it affects them psychologically too. I know from my own personal experience that you feel defeated and you feel betrayed by your body. You also feel diminished as a person and as though you are no longer allowed certain things because you don’t have your own money. It is a lot of work recognizing that none of this is your fault and feeling good about yourself again. Disabled people want to work. It’s the accessibility of work that is the issue and the reason so many who have a disability can’t work.

·       You aren’t really disabled if you only use your mobility aid part of the time: There are many who are pretty insistent that because I do not use my cane, 24/7, that I am not truly disabled. My humorous come back for this, because I can be snarky now and then, is, “Why no, my cane is actually a walking staff and I’m really a wizard.” After which I proceed to roll me eyes. Just because I feel safe to navigate my itty-bitty house, without my cane, doesn’t mean I am not still disabled. I cannot navigate outside terrain, from grocery store to parking lots without it because I never know what I might encounter. It could be a crack in the road or just someone who is inconsiderate and pushes their way in front of me because I am slow and I lose my balance. The cane helps me not to fall, it helps when I get tired from walking and begin to hurt. It’s my prerogative to use to help me feel safe in an unfamiliar environment. I think I deserve that. So, yes, I’m still disabled.

There are many more instances, but these were the first to pop into my head. Feel free to message me with your experiences and I will do a follow-up piece to this one. As always, thank you for reading.

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Chronic Illness: Oh, I hope you feel better soon.

We live in a world where being polite is reflective of manners. Someone sneezes, we say “God bless you,” whether we’re Christian or Atheist. It’s not an actual blessing, as Pope Gregory the Great uttered it during bubonic plague epidemic of the sixth century. [https://people.howstuffworks.com/sneezing.htm] (Just figured I’d throw some trivia in there for you. In case you’re ever on Jeopardy.) It’s just considered good manners and nobody thinks much of it. When you are sick, people often tell you to “Get well soon,” or “I hope you feel better.” Sometimes people mean it sincerely, and sometimes it’s just something people say because they are trying to be polite. Regardless, we don’t usually take offense to it and we say “Thanks,” and go on about our day. However, there are some of us who, while we may not take offense to it, are sick of being told “I hope you get better soon.” It may sound strange to you that someone would get upset over a seemingly benign offering to get better, but when you live with chronic illness or pain and aren’t going to get better, it can become aggravating to hear. Even more-so, is when you’ve addressed this, and your friends or family refuse to accept that “getting better” is not part of your story.

exploding-head

It is difficult for everyone to accept they have a chronic condition, especially at first. Chronic means that there is no cure, and that you will have to live with this condition until you die. It can be very daunting even for the most optimistic of individuals, but you eventually learn to live in this “new normal,” and that doesn’t mean you’ve given up hope, it just means there is a level of acceptance that healthy people are unaccustomed to. What I mean by that is, healthy individuals typically only have dealt with things like a cold or sprained ankle, or maybe a broken wrist where they had a cast for awhile or broken leg where they hopped around with crutches. Some, maybe deal with a chronic illness that is controlled by medicine and if they are careful, that is all it takes to keep them healthy. While still chronic, it is maintained so they feel good a lot of the time. Those like me, with chronic illness that is not controlled by medicine and only manages some symptoms, not necessarily all the time, live in another world.

Here are five examples of why telling someone like me, who has chronic illness, “Hope you feel better soon,” (and other things) can be irritating, and in some instances, makes us feel like our head is about to explode and what you might offer instead:

SheldonBoom

  • It’s been five years since I “got sick.” Either I have the longest flu in history or I’m not getting better.
  • We are only co-workers, but I’ve told you I’m chronically ill and you still pat me on the back and tell me “I hope you get better soon.” It’s okay if you don’t know what to say. I’d prefer “Is there anything I can do,” than anything else.
  • I’ve told you before I have a chronic illness. Somedays are worse than others, it’s just the cards I’ve been dealt. You don’t have to say anything at all. You could offer me a hug. Sometimes that can make all the difference.
  • Don’t lay hands on me and start praying over me. Don’t tell me Jesus has a reason and I’ll understand his purpose. Not everyone is religious and if Jesus has a reason, I wish he would have chosen to show it a different way.
  • I know you mean well when you say, “I hope you get better soon,” but it often leads to “How are you feeling today?” The latter is almost worse than the first because, I feel like I’m disappointing you when I say I’m no different than I am every day. And if I am having a good day, you think all the rest of my days should be good and it just doesn’t work that way. Ask me instead: “Is this a good day or a bad day.” If it’s good, be happy with me. If it’s bad, just let me know you are there.

Hellloooo!

Hello again, blogging-world. Miss me? I missed you. But I needed to take some time off for self-care. It’s been frustrating, to say the least. I think we can all agree, that when you suffer with more than one chronic illness, things can get a little hairy from time to time. Your body lets you know, in no uncertain terms, that you’re it’s bitch. (I really tried to phrase that more eloquently, but let’s face it, there’s nothing eloquent about this situation.)

If you’ve been keeping up with my blog, you know that I’m quite overwhelmed with several different things going on. If this is your first time here, I battle R.A., fibromyalgia, ankylosing spondylitis, IBS-d (but I think that is shifting to a mixed form), sacroiliac joint dysfunction, seizures, degenerative disc disease, psoriatic arthritis and migraine. Everyday is different. Somedays I actually feel what passes for good, in my world. In a non-chronically-ill-person, that would translate to something less than good. Crappy, in fact. I deal with it all as it comes, trying to make the best of the days I feel good and where I am not suffocating from pain or debilitated by symptoms.

These last two weeks have been an extended affair of miserable, but I am feeling as though I am finally bridging over the worst part and may be coming out the other side. When I am feeling my worst, I practice a lot of self-care, which for me includes: hot baths with Epsom salt, listening to mixes on Spotify, devouring Twitter and Instagram, taking a lot of pictures of my adorable cat and dog and spending a lot of cuddle time with the Mister. Unfortunately, the Mister was gone this weekend for his one-a-month Air Force gig, so I had to cuddle with the cat and dog, but we made up for it when he got home last night and plan to do more today, after his work.

In my blog, I focus a lot on issues I see in this chronically-ill-world. I also write about the discrimination I see in the disability world. I share my experiences in both those areas, as well as mental health. Some of my chronic conditions not listed above, have to do with mental health, as I am bipolar, struggle with OCD and PTSD and severe anxiety. As many people can relate, when my chronic illness is flaring, I tend to feel a spike in my mental health issues. Meaning, my anxiety ramps up, my OCD goes a little bonkers and I may get depressed or even slightly, manic. It’s all very interconnected. Today, my writing is more, catch-up. Less focusing on specific things, but rather this monster of chronic illness as a whole. It really is like a vast eco-system, and when something is off, or when something is out of control and flaring, it bounces off and affects the other things. These last two weeks, I think I might have gotten a glimpse of how our actual eco-system is feeling in the midst of all this climate change. It’s been brutal.

I had started a chat on Twitter (which you can follow me @lovekarmafood) on whether or not to take the chance with another gastroenterologist. Something else I am sure you understand, is when you know something is wrong with your body and you don’t feel the doctor is understanding or listening, but being afraid to find a new doctor and having to start from scratch again with tests and meds because, frankly, it’s exhausting. Not only is it physically exhausting having to go to the appointments, but it’s mentally and emotionally exhausting. I am pretty close to starting that search for a new doctor, especially after this week. It was probably the worst IBS flare of my life, with stomach pain that was worse than labor pain and was reminiscent of Aliens for me. But I didn’t go to the hospital. I’ve been there before for an IBS flare and it was not worth the visit. Once they know you have something chronic, they do their best to make you comfortable, but pretty much tell you to see your doctor. And in this day and age with the opioid hysteria, I’m not sure what “comfortable” would mean. Sometimes I feel that as an advocate for chronic illness/pain, and as a writer, chronicling her journey through this illness and pain, it should be easier for me to vocalize with doctors what I am feeling and what I am going through, but I’ve learned something. Doctors (not all) have a way of making you feel that they know best. Some come off as arrogant, while others come off more like a parent, but either way makes you feel like you don’t even know your own body. It’s terrible. And partly the reason for my reluctance in finding a new doctor. But I would really like to feel better, long term, with this IBS.

So that is a little about what’s been going on in my life. Stay tuned for the next time where I’ll be talking about our non-spoonie friends and their well-meaning, but irritating: “I hope you feel better soon,” followed by, “You’re not really disabled,” for my friends (like me) with disabilities.

Chronic

Chronic mental illness defined: A mental disorder, also called a mental illness or psychiatric disorder, is a diagnosis by a mental health professional of a behavioral or mental pattern that may cause suffering or poor ability to function in life. Such features may be persistent, relapsing and remitting, or occur as a single episode. [https://en.wikipedia.org/wiki/Mental_disorder]

 

It is difficult for many people to wrap their heads around mental illness as a chronic condition. There is this idea that if you are a good patient, taking their medicine as prescribed by your doctor that you will be cured and return to normal. As a person who struggles with chronic mental illness, I can tell you that this is not the case. As the term chronic implies, this is long-term, which means the rest of your life. Medication can help with symptoms and truly be life changing, but there is no escape. You may even be perfectly well-managed for 30 years, however, whatever form your chronic mental illness takes, it will be with you forever and that means for some, every day is a constant battle with symptoms. What I like about this definition is that it points out this can be relapsing and remitting or occur as a single episode. There is no one-size-fits-all when it comes to mental illness. Each person experiences it in their own, in a very intimate way. Here are some things to know if you have Chronic Mental Illness.

 

  • You will grieve after diagnosis: I find that mental illness takes up this grey space, that chronic illness also shares, where you don’t have a cure, but you are not going to die and you may even look good enough to pass for healed, but you aren’t. All it takes it that one trigger to breathe life into something that might have been dormant for years, or not even a trigger, but just a shift in moods that is enough to pull you under. You are going to grieve life as you knew it, being gone. You are going to grieve a life of simplicity, where you didn’t have to take meds and your moods made sense. But you will make adjustments and you will find a way to live with your mental illness.

 

  • Your mental health is not just about you: This is something not everyone agrees with and I am by no means speaking as an expert, but only personally. As always you must follow the instruction of the doctor whose care you are under. However, for me, my mental health wellness was important to many lives around me who I touched. My husband, my children, and my parents, as well as my near family which would include my brother and sister in-law and mother and father in-law. This meant that finding a place where I could take care of myself, and my children and be in a good place and not wanting to hurt myself was immensely important. It meant that for a while, I took my medicine religiously and sacrificed much of my own freedom of thought towards how these meds made me feel until I could make needed changes with the guidance and support of my family. I found a new doctor who was able to stabilize my behavior with less medicine and I won my creativity back. We have to be there for those who love us and depend on us. We also have to advocate for our best mental health and if that means seeking a new doctor you must.

 

  • Medicine is not a fix-all: It took a few years of living in a fog of medicine, where days and weeks passed in a blur in which I was not participating in life that two things happened: I found a new doctor and I researched other ways in which I could help to regulate my mood. I discovered meditation and I re-discovered writing. These have both been integral to my healing as well as something that I can do when I feel my mood slipping. Since then, I’ve also learned how to practice Mindfulness. It’s not hard and it doesn’t take that long. But for me, it is the anchor that I need when my seas begin to churn. Mental illness never leaves us. It is this constant and sometimes sinister under-current through-out our lives, but we can manage it in combination with medicine and many other ways that can help us live in peace.

 

  • Educate yourself and educate those closest to you about your mental illness: Everyone has their own perception about mental illness. Even you may have had your own ideas of mental illness until it touched your life. Sadly, there is still not enough candid conversations about mental illness and while there is better understandings, we need to open up about this so that children and teens and young adults can come to us and talk to us about what they are feeling, without feeling like there is something broken about them. You need to educate yourself and your friends and family so that they can begin to comprehend what you are going through and be there to support you. It is vitally important to your continued and long-term well-being, that you have people around you who will be able to see when you might be slipping, when you can’t see it yourself.

 

  • Don’t stop your medication without doctor supervision: I feel that this inclination to want to stop medication is partly to do with our societal taboo in regards to mental illness and partly because we don’t want to feel like we are dependent upon this medication. It makes us feel like we are not being our authentic self if we have to rely on medication to be “normal.” But the medication is actually helping us to be our authentic self, where-as our mental illness, is the deception. More importantly, suddenly stopping your medication could send your entire body into tilt. Anti-psychotics can often leave you with nausea and feelings like you are in withdrawal. You might catapult yourself into insomnia on top of shifting your mood. When I told my psychiatrist, I wanted to go off medications for a while, with his supervision and continuing my monthly visits, he supported me. His support also hinged on my finding other ways to manage my moods, as I mentioned above.

 

  • Don’t fight this battle alone: You need a support network. You need people you can trust, who will be there for you when you need them and who will advocate for your health, when you cannot. If you do not have someone who can advocate on your behalf, I would suggest making your doctor fully aware of what it is you want, in terms of medication should your current ones fail. I would also keep a medical directive, an advance healthcare directive, also known as living will, personal directive, advance directive, medical directive or advance decision, which is a legal document in which a person specifies what actions should be taken for their health if they are no longer able to make decisions for themselves because of illness or incapacity. [https://en.wikipedia.org/wiki/Advance_healthcare_directive]

 

This isn’t just about a DNR, but making sure that your doctor is aware of what you want should you be incapable of telling him. Even if you have family and support, it’s always a good idea to keep this and make them aware of it so that emotion doesn’t cloud what it is you want. It may seem extreme, but when I spent time in a mental health facility, there was a patient whose family was extremely distraught with her decision to undergo electroconvulsive therapy (ECT), and who attempted to stop the facility from doing it, citing that she was ‘not in her right mind’ but her advance medical directive made it impossible for them to stop it.

 

 

As always, thank you for reading and supporting my blog. Please share if you know someone with chronic mental illness who might benefit from it. Or share it with their friends and family.

POTS Syndrome

POTS syndrome is also known as postural orthostatic tachycardia. It is one of a group of disorders which have orthostatic tolerance (OI) as their primary symptom. Orthostatic intolerance describes a condition in which an excessively reduced volume of blood returns to the heart after an individual stands up from a lying down position, fainting. [https://www.inlifehealthcare.com]

Symptoms Include:
Fainting
Heart palpitations
Shaking & sweating
Weakness & fatigue
Dizziness or light-headedness
Headaches
Poor sleep
Chest pain
Feeling sick
Shortness of breath

3 Types of POTS

Neuropathic POTS
Hyperadrenergic POTS
Secondary POTS
Neuropathic POTS
This is essentially nerve disease. Here, the sympathetic nerve supply to lower limbs does not function properly and so there is pooling of the blood in the lower extremities rather than being returned back up to the heart. This leads to dizziness on standing and an increase in heart rate. This is the most common form of POTS.

Hyperadrenergic POTS
This is a case of high adrenaline. These patients have high levels of norepinephrine in their blood. This leads to increased heart-rate and blood pressure. While neuropathic POTS has lower blood pressure and higher heart rate when standing, hyperadrenergic POTS typically has both increased blood pressure and heart rate when standing.

Secondary POTS
This refers to POTS syndrome that is a result of another under-lying condition that leads to damage of the nerves that usually control the re-distribution of blood. These under-lying conditions can include diabetes, lupus, alcoholism and chemo. [https://myheart.net/pots-syndrome/types/]

Some Spoonies Worst Symptoms and Some Advice:

Stephanie shares: “Right now, I’m struggling most with temperature regulation and sweating. I’m always getting hot and cold at the same time! And I get so fatigued from standing it’s crazy!”

Adara shares: “I can’t stay standing for very long due to dizziness, drop in bp, heart rate and lips going blue. Hands and feet go red and purple and I get brain fog and fatigue. I use a wheel chair now. (I was once a badminton player) I was diagnosed after ten years- took a print our of POTs information to my doctor.”

Adara gives some advice to POTs patients: “Drink lots of water and salt (always carry emergency salty snacks, the way diabetics carry sweet stuff). Wear compression socks, stay cool, use a shower stool/seat and if you want to try physiotherapy/medication, then ask loudly and don’t be given no for an answer.”

A Brief Tale of Kristie’s POTS Experience:
I “spoke” to Kristie Johnson, of Migraine Mantras (Migraine Mantras), via Facebook messenger. She’s been dealing with POTS for eight years now, before doctor’s finally began looking into it and was finally diagnosed two years ago with it.
When I spoke to her about her most aggravating symptom’s she told me this:

“I have the most trouble with blood pressure drops. I get up slower, turn slower, anything I can do to avoid passing out. Gatorade and body armor are the only thing helping me right now. I know when I’m about to pass out, 90% of the time (ringing ears, dizzy, blurred vision or blacked out vision) and can sit or lay down before it happens. Sometimes I can’t catch myself. I’ve fallen down the stairs, fallen into things, washer, a dresser, etc.

When talking about her symptoms, length of time she’s been struggling with her symptoms and her recent diagnostics, she told me:

“Local docs won’t treat me, and I’m actually being sent to a hospital a few hours away to see an autonomic specialist for treatment. It’s 3-ish hours away in a Medical Center in Norwalk and I’m on disability so money isn’t something I have a lot of.”

I also asked her which POTS she was struggling with.

“Reading into it I mostly fir into the Secondary POTS category because I have under lying issues like Lupus and nerve damage.”

Sharing Stories Brings Awareness

Like so many others, Kristie is struggling with POTS and it is my hope, that through the sharing of these and so many other stories, we will bring more awareness to POTS and other chronic illness, to those who do not know or do not understand enough about them. We have begun to learn, the impact our voices have. I encourage everyone to share their story with people everywhere, because you don’t know whose life you will touch. When we are silent, we often feel we are alone. When talk and share these stories, we are suddenly catapulted into a community who can listen and support us.

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