Managing Fatigue, and Conserving Energy

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Caramels – 50 Mg. each

                 25 Mg. Hard Candy     25 Mg.Capsules

With extreme fatigue I find it’s important to pace myself and to look for products, activities, and strategies that might at least over time increase my energy level or at least conserve it as much as possible.

One thing I am very interested in (especially since it has become more and more difficult to tolerate solid food) is Cannabis edibles. (I have been sampling a few that melt away to compare effectiveness, as all the pills I’m taking now are about to gag me).

While none of the products I’ve tried is the “real” stuff with all the elements of the plant, I know that as nutrients some of these products have at least some nutritional benefits of the hemp they are made from.

The above Fleur de sel Caramels with sea salt purchased from a small maker called Nutrient Bomb where I ordered on Etsy have an interesting flavor almost like black tea, and smooth and very stretchy texture. The seller also sent me a few of their other products as free samples. The pills I’m not really keen on (for the reason I mentioned earlier), but the hard candy squares were pretty good tasting and I couldn’t taste the CBD, although the flavor was hard to identify; somewhere between cinnamon, cherry, and mild menthol.

If nothing else, I’m trying to eat 1 caramel a day (I just got 9 to test out and see whether they improve my energy level or GI symptoms). So far I’ve only had 3 days to try them.

After seeing a new Gastroenterologist the day before yesterday I discovered that I have really lost alot of weight. I knew my pants were beginning to fall off me but it did’t hit me how extreme it really was until she mentioned it. I’ve started losing my hair too and it has on occasion literally fallen out of my head right in front of me without provocation! I have been finding it all over my bed sheets, clothing, etc., even on the carpet. I don’t know if it’s some sort of endocrine problem or what. It’s very strange, though. I hope it doesn’t continue dropping at this rate or I might end up bald!

My muscles often burn and even the slightest exertion takes everything out of m so I’m trying to conserve energy as much as possible.

I find that one of the best ways to do this is to literally sleep whenever I feel I need to and not force myself to stay awake because of the time of day or what I’m doing.

Sometimes I need to sleep alot more hours than normal in order to have the stamina to shower once a week, and since I currently don’t have anyone to help me I just can’t do it everyday as I would like to. I have to let certain activities go out of sheer necessity.

I find that alternating activities more often helps as well. Changing positions is very important if you are bed-bound because you are less likely to develop pressure sores, and if you have chronic pain and muscle spasm that’s triggered by sitting squarely putting pressure on your butt, then shifting to one side or the other can make things easier.

Being in pain in itself can wear down your energy and aggravate fatigue and it can make you irritable. I find sometimes pain creeps up on me before I realize it (because I’m so used to it), and all of a sudden I feel awful. I try to identify as best as I can when I’m starting to have pain and take my pain medication as soon as I notice it.

At times I have mistaken it for fatigue when it was actually pain starting up. I have now become pretty good at recognizing this pain aura and know when I need to take care of it to prevent a cycle of pain and fatigue from being set off.

As I also have some severe sensory issues I know about my body that I cannot tolerate any type of suffering for very long before I’m in all-out sensory overload. Symptoms I find are causing significant distress need to be taken care of expeditiously; no waiting around and procrastinating. They need to be treated now. This is something I was not able to get through to my GP, but it is absolutely crucial that any physician working with me understand this and respect it because it’s not that I’m being demanding or being a diva, but that I really can’t stand it. With the way I am wired, this is not a choice or a mere matter of convenience as some may assume, it is a need.

So if any of you readers are in the same boat it might be good to try to have a talk with your doctors about this as early as possible. If they are truly interested in helping you they will understand and try to accommodate you. If not, then it’s better to find out sooner than later after you’ve become invested in that doctor/patient relationship and find a doctor who will understand and meet you where you’re at on this.

Maybe I made the mistake of not telling mine this soon enough, but I think I was less aware of it almost 13 years ago when I began seeing him, so I’m not sure I could have made the connection back then. It has been a long process of self-discovery to fully understand how my brain and body works, but now I know alot more than I knew then and often learned things through rough trial and error.

It takes more energy for me to withstand protracted suffering (pain, stomach upset, near syncope, etc.) than it might be for somebody who does not have sensory issues. It’s as if somebody turned a dial way up and the longer I go with untreated symptoms the more excruciating it is. Someone who does not experience this themselves cannot ever fully relate, but a truly compassionate doctor will take your word for it and not expect you to jump through yet more tiring hoops that only make your life more difficult and deplete your energy.

My not being treated for my Dysautonomia since November, I’m sure, has taken a toll on me both physically and emotionally, and it occurred to me that it might actually be causing me to burn fat and muscle at an unhealthy rate. I suspect I’m probably in ketosis.

This state will deplete the little energy you have remaining very quickly. I’m trying to drink some Pomegranate juice I still have in the house in-between drinking my ice water, as Pomegranate is a super-fruit filled with anti-oxidants and has lots of nutrients in it.

When I need something from the kitchen I try to bring everything in there I need to at the same time, and everything back from the kitchen I need at the same time.

Although I’m in a power wheelchair I get fatigued very quickly just sitting in an upright position and the one I currently have has no neck or headrest so my neck can’t hold out unsupported for more than about 15 minutes.

Having the right adaptive equipment can make quite a difference. I’m working on getting a better chair that will support my body more equally and allow me to recline if I suddenly start to feel faint when I’m up.

Whenever possible I also try to put my forearms on the counter when preparing something, I now don’t bother putting dishes inside the cupboard like I used to, but keep them on the counter so that I don’t have to reach and strain to get a plate or a bowl after taking them out of the dishwasher.

Mental concentration for long periods of time tires me out, so I try to break up those activities and when I feel worse I stop and either lie down and totally rest or sleep, or I do something that requires less intense concentration.

I recently went onto Listia , (which for those who are unfamiliar with it is a site where you can get items for points rather than money), and bid on and won two adult coloring books. Being an artist who is used to drawing, painting, and making jewelry, when I saw these becoming popular my first impression was that is was a little bit wussy to color prefab designs.

However, as I have gradually lost some fine motor abilities in my hands when it comes to the type of art I have done for years and now find impossible and frustrating, I understand the appeal of these for adults with chronic disease.

I think what it is that is so freeing about these is that certain types of executive functioning such as planning out where to position an original design on paper, perspective, and composition require the artist to expend alot of energy.

When you are healthy you may not even be aware of it, but when you’re ill you definitely feel as though the act of creating (the very thing you love) becomes a chore of monumental proportions!

Not being required to do these things that tax your brain and attention gives those of us with chronic illness a break from having to plan things out to the 9th degree, an activity which can sometimes just be too much, especially on days when we have alot of pain and/or fatigue and brain fog.

I would love to hear from readers what you do to conserve or increase energy. Please feel free to leave a comment and to subscribe.  🙂

 

 

 

 

 

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A Strange Irony

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Things have become increasingly precarious as time goes on. I am used to spending time alone and often prefer it but it doesn’t really hit me how alone I am until I find out I need help with certain things and can’t obtain it, yet can’t do certain functions myself either. Then all of a sudden it hits me that there’s nobody there but me, at least noone reliable. With my body becoming less and less reliable that is really becoming a problem.

The past few days have been unbearable with the dysautonomic symptoms out of control and nothing I can really do to stop them. The near fainting spells wake me up from sleep and along with them comes heart arrhythmia; my heart pauses and then beats weakly with a faltering type of flutter. I feel so weak now and just want to rest. I’m finding now that my GI problems are becoming more baseline and that I can’t tolerate much by mouth except yogurt and applesauce. Last night the applesauce didn’t even sit as well in my stomach as it had just the day before. The previous day I’d tried making a rice bowl with cheese and some sour cream and some seasonings and ended up in bed on my side clutching my stomach. It felt as though by the next morning my food was still up in  my throat. It was not digesting.

Because of all the stomach upset I have not been able to take most of my medications. It’s harder and harder these days to take anything by mouth but my ice water.

I’m now running out of things I can eat in the house anyway and have neither the money nor the stamina to go out and get more from the store.

There was one person who shopped for me occasionally but he has dropped out of sight for weeks now and I’m not sure what has happened to him. The few people I know locally seem to always have tenuous phone and internet connections. They either don’t receive messages due to a technical problem or else their services are cut off on any particular month for non-payment.

Today I got word that my application for the Independent Care Waiver through medicaid was denied. The Reason? Because I am “wheelchair bound and have no circle of support” both things I have no control over. I wonder what kind of people came up with those harebrained regulations?

So if someone is in need, is disabled, with limited mobility and has no support then the response is you don’t give them support? How much logical sense does that make? 40 hours of service a week is sure better than nothing! I would take that if that’s all they can offer, but somehow my voice doesn’t count. This is another example of the patient’s needs being totally and arbitrarily disregarded.

Two more weeks to go before I find out about the other waiver. That one gives you less hours but doesn’t have the requirement that some person in the community sign a form, so we’ll see where that leads.

So nobody’s regularly checking on me locally now and things are worse than they were several weeks ago both in terms of people coming around and in terms of my health.

I have also been unable to reach my son. His new phone contract is now long distance if I call him but if he calls me it’s free to him, but I now get a generic voicemail when I leave a message. Emails have also been unsuccessful. They go through but no response.

I need somehow to reach my aunt to let her know that I will likely need someone to go with me to some of these out of town independent evaluations. She would probably want to know but I have heard nothing from my cousin for months now from her Facebook account who had said she’d contacted her and a few of her children after I got out of Piedmont.

As for making new connections, it’s a bit late for that. I’m not much more than a pet rock at this point, lying in bed only able to sit at my computer propped up on pillows. Honestly, who locally would want to know me? I’m sure they’d be bored after a few weeks at best. I can’t really go places, I have no money to go out to eat these days, and if I did the food would make me sicker. Then there’s the fact that my underlying disease is untreated and totally out of control and this makes me not the best company because I have to first focus on saving my own life on a daily basis. That doesn’t make room for much talk of everyday things that others take for granted and are part and parcel of most friendships.

On my better days I can talk about art and politics, and animals, and if I don’t have to talk I’d much rather hear about their lives than talk about my own as answering questions in itself has become taxing and painful, but my better days are getting fewer and fewer now.

Bills are falling by the wayside because my brain can’t hold any more than what’s right in front of me right now. Processing is at a slow crawl.

I find it hard to do much at all today besides making sure my glass of ice water has enough ice in it. Going to the kitchen even in the wheelchair is exhausting to go get more ice, but I hope I can continue to do at least that because I don’t want to be further dehydrated.

Beneath the surface I am grieving a life lost and the realization that my days are numbered. This is not some sort of depression but a coming to terms with what is, and what could never be despite all my efforts. I never wanted it to end this way, but at least if it has to be I will die at home with dignity. If I don’t make it through then perhaps they will find out what’s really wrong at autopsy and if it’s genetic as I suspect these results will be shared with my son so that maybe he won’t have to meet the same fate as he gets older.

As with any disease, early detection and treatment are key, even in those without a cure. If my story ends up a cautionary tale then my life will not completely have been in vain.

 

 

 

Treatment Stalled Again Because Of Emory

Running Out of Time - Hourglass

Treatment has hit another snag and it’s precisely because of those medical records from Emory; both what they say that is false and what they don’t say that is true. The worst of both worlds. What good are medical records anyway? Isn’t the whole point to help the patient? And if they actually sabotage a patient and prevent them from receiving the care they need then what?

 I wonder how long I can go without treatment before this again becomes an emergency. I am so overheated there isn’t enough ice water in the world to relieve it. I can’t seem to stay cool enough and I sweat around the hairline and in other specific areas of the body. It’s strange because it’s not my entire body that sweats, just certain parts of it such as lower back and my face and scalp get spontaneously oily. I change positions but that only helps temporarily. Holding my glass in my hand helps to a certain extent but it also melts my ice faster. Although I have my wheelchair next to the bed even getting in it to go to the kitchen is exhausting especially given the fact that I still have no neck support and am sitting upright. Me and gravity don’t exactly get along.

The weekend was absolute hell with cardiac events waking me up two nights in a row, several times each night with my heart pausing and then straining to beat slowly and haltingly. The only way to prevent it is to stay awake in the wee hours of the morning and even that doesn’t always keep it from happening. It often flairs really badly at around 3:00 AM – 6:00 AM.

My gastrointestinal symptoms have been quite erratic lately and I have noticed loose sticky stool yesterday and more urinary retention. Oddly when I peed it was as though I really wasn’t feeling it coming out. It wasn’t numbness in the usual sense, just lack of sensation or greatly reduced so I was unaware of just how much was actually in there. I had to consciously push with my abdomen to get it out but it was quite alot.

Then later I started noticing some fecal odor and leakage from the back end and have had to change underwear on a number of occasions. It’s not diarrhea but some sort of brownish greenish clear liquid. Sometimes I see it when I wipe myself on the toilet paper too.

I’ve been waking up each morning with headaches that are so debilitating I can’t move sometimes for an hour before the pain lets up enough even to sit up and get more ice water with which to take my pain medication.

My eyes continue to be dry and the skin on my arms is taking on a distinctly crepe look. I must still be dehydrated. The water I’m drinking and salt intake just aren’t processing through the GI tract.

Change is Coming; Our Bodies, Our Choice!

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Momentum is building within the chronic illness community and as the numbers reach epidemic proportions we are rapidly becoming the majority and becoming a formidable voting block as well.

As patients we are taking our health into our own hands and insisting upon the respect and dignity we deserve in forging our own path to wellness…and on our terms. As we become more and more educated the traditional medical hierarchy is increasingly proving to be outdated and non-applicable given the current state of affairs.

This is our life and our body that we live with 24/7. The doctor who treats or fails to treat can go home and turn his mind to other things, whereas whatever treatment decisions are made will follow us, the patients, when we return home. These decisions and the orders or lack thereof surrounding them often determine our level of relief or suffering. Our doctors, (while well-meaning in the best case scenario) cannot fully ever grasp what we deal with on a day-to-day-basis, so in fairness they need to acknowledge and give reverence to the truth that nobody can know the workings of our selves better than we ourselves.

There are many things no medical textbook can teach you.

In the real world organs in the body don’t always work that way, and to insist on believing they must is to deny the patients’ very humanity. One cannot approach the human body the way a mechanic approaches a car. We are much more complex than that. Human beings are both consistent and inconsistent. That is what makes us human. Unlike machines we feel everything that is done and not done to our bodies and to our minds. This in turn adds to our physiology for better or for worse.

A good and wise doctor understands that he/she must not ever eclipse the patient, but instead be a good facilitator and advocate for that individual and always fulfill a supportive role throughout the course of the patients’ life, not to decree, mandate, or gate-keep, but to pave the way for their patient’s own individualized path to healing to the best of their ability, to remove obstacles and never to create them. The patient, especially the complex chronically ill patient’s life is hard enough. The goal should always be to make it easier.

Ethics demands that the doctor/patient relationship in today’s modern society be one of equals, a partnership toward a common goal, while always remaining mindful that the patient has the final say in the body which the patient alone owns. This philosophy must also extend further than the office of the primary care physician and carry over into all areas where medical professionals exist.

Doctors, healthcare systems, medical schools, conferences, and regulatory decision-making bodies can no longer afford to shut us out, put us off, nor deny us an equal place at the table. We are becoming a force to be reckoned with and a strong source of information  not only of help to ourselves and our fellow patients but also to doctors, residency programs, and continuing education programs. It is often we, the patients who dig up the research papers, find the links, and connect the dots our doctors don’t have the time or interest to seek out.

We, the patients notice shifts and changes in our bodies that provide clues the doctor might otherwise completely miss. Without clinical symptom monitoring and record-keeping a doctor often has no way to know even what tests to run or where to start looking. Listening to the patient is probably the most important part of reaching an accurate diagnosis. This is why it’s so much more difficult to treat animals and small children because they can’t tell you what’s wrong.

This is also why perceiving a patient as an unreliable source is so dangerous. They are capable of telling you what’s wrong but if you don’t believe them on a core level you are dismissing and/or throwing out important information you need in order to assess, diagnose, and treat them.

For true equality to happen first doctors and the institutions that train them must acknowledge the need for change.

It is one thing to be ignorant of new knowledge, but quite another to refuse to allow it in and instead stubbornly hold onto one’s ignorance.

Patients’ Lives Matter

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First they ignore you.
Then they ridicule you.
then they fight you.
And then you win.”

This saying has often been attributed to Ghandi but some version of it has been repeated by a number of people in activist movements the first of which is believed to have been Nicholas Klein of the Amalgamated Clothing Workers Union said in 1914.

It is especially fitting now for as I’d suspected the offending parties are in fact reading my blog. I got confirmation of it today in a letter dated March 21st, the envelope of which says “Administration”, and inside top left-hand corner says “Office of Quality & Risk”. Apparently T.Js Supervisor decided to write and tell me to shut up, himself. He says and I quote; “This is a response to the various concerns you have continued to raise to several individuals within the Emory system regarding your medical care and treatment at Emory University Hospital on December 3, 2015. At the outset, I emphasize that we thoroughly investigated your complaints properly considered your requests, and responded in writing to them. I direct you to the response letters from Emory regarding these matters. Further, we have performed additional reviews after learning you were not satisfied with our response.”

Interesting he should say they’d done “additional review” as all I was told by TJ in her nasty, unsolicited and retaliatory phone call was that she’d already finished her “investigation” and that “nobody is going to call you back”, (before talking over me and rudely hanging up). There was no chance to ask any questions or raise further concerns, and it was clear she in no way wanted to accept any more nor to help solve any. That was the last correspondence I had from anyone in that capacity.

I received no letters showing any evidence of further investigation nor were any of the gaps addressed in their investigation that I’d pointed out. Many questions remained unanswered and he never returned phone calls I’d made to him when I got the initial response showing that his subordinate had not done a fair and complete investigation. Then he goes on to say; 

” While we remain apologetic that you have been dissatisfied, please know that our conclusions and decisions regarding your aforementioned complaints and requests have not changed since the time of the response letters. Please also understand that you continuing to raise the same complaints and requests to different individuals within the Emory system will not change our conclusions and decisions regarding these matters.”

So in other words he as agent for Emory will not remove the libel from the ER record, amend the record, bar the offenders from accessing my record, nor take any other actions to protect me as a patient, nor take any disciplinary action against those who participated in the abuse and neglect even if the CEO himself were to insist on it. (That was who’d I’d written by the way; the head of the corporation. I did not know at that time there were two; one for the University side and another for the medical side, so I mistakenly wrote the wrong one first and then was directed to the one for the healthcare side).

 Then he goes on to say this…”If you have any new or additional complaints or requests regarding any medical care provided to you at Emory at any time, please let us know. As we have done with your complaints and requests up to this time, we will thoroughly investigate the complaints, properly consider the requests, and respond in writing to them. We have assigned Ms. T.J., Manager of Patient and Family Advocacy, as your point of contact regarding your complaints and requests. Ms. J can be reached at (phone number).”

As it will be when pigs fly before I ever enter their ER again, Ms. T.J.s “services” will not be needed. She is not allowed to tamper in other areas and if I catch her doing so it is a further violation. 

He goes on to say;

“We do ask that you focus and limit your communication to Ms. J so that we can ensure none of your concerns go unnoticed and so that we can manage your communications with us in an efficient and effective manner that does not detract from our goal to provide quality medical care and services to our other patients and families.

We are aware that you have posted and discussed online at patientsrigtsadvocate.com your complaints and requests regarding your medical care and treatment at Emory. While we respect your right to express yourself, we request that you remove the specific references to Emory and our personnel. We also encourage you to direct your complaints and requests to Ms. J in lieu of posting them on your online blogs.

Moreover, as we have stated in previous correspondence to you, it is our expectation that our patients have positive experiences while under our care, and we deeply regret that we disappointed you. If you truly remain  dissatisfied and feel that we at Emory have not appropriately met your expectations, please know that you can always seek out your medical care and treatment elsewhere. We do thank you for reaching out to us to express your concerns and for giving us an opportunity to look into them and to continue respond to you.” He then signs his name, LOL.

OK…Now let me get this straight…

First they neglect and abuse me in their ER, then libel me in my records, then refuse to correct their rights violation, turn my own doctors who I’ve known for years against me, play all sorts of dirty tricks to cover it up and sabotage my treatment at Emory and out  and because I write about my experience in my blog he wants me to remove it? Aaaah…Nope, I don’t think so. After a full and complete investigation I find everything to be correct and complete as is.

So sorry you aren’t satisfied.

But hey, if you really did nothing wrong then what are you worried about? I stand on  my principles.

One has to wonder why little old me, one patient in the entire Emory system has that much power that he implies to warrant that sort of extreme knee-jerk (sorry for the pun) reaction (just a strong reflex, I guess).

Me thinks maybe there’s something a bit deeper going on which has nothing to do with me and that even I do not know.

Oh, and the best part…I’m starting my treatment very soon! (from someplace else that is taking me seriously despite all the dirty corporate  tricks and  unprofessional  attempts to distract, dispute, and derail me from my goal).

The Poisoned Pill; Chronic Illness/Disability Shaming as Cultural Norm

Phrases and affirmations for and about the chronically ill or disabled can be healing or they can be insidiously hurtful. A recent video I watched about society’s shift in perception of the chronically ill got me thinking about just how we got here and provided some insight into those factors that have eroded empathy and created a cynical public perception of those whose illness or disability does not go away in an allotted “socially accepted” period of time. In the video The Slow Death of Compassion for the Chronically Ill a number of sociological factors are discussed which over time have affected how the general public views those who don’t “overcome” their disease or disability.

The media bombards us everyday with messages and stereotypes of people who have overcome and “beaten the odds” while the subtext beneath the surface suggests that those who don’t are somehow weak, not trying hard enough, not positive enough, or are undeserving of understanding and acceptance. The underlying message is that “if this worked for me it must work for you, and if it doesn’t then there’s something wrong with you!” This message is so woven into our culture that we may not even recognize it when we see it, and may pass it onto others without even knowing it.

Consider these phrases for a moment. When you really pay close attention how do they make you feel?

“It could be worse”

“Are you still in bed?”

“You just need to change your attitude

“You need to change how you think about your disease”

“A pity party”

wallowing

Move on

“Suck it up

“Don’t let it bother you”

“We can’t change what happens to us but we can change our reaction to it.”

“You’re doing it to yourself.”

“Complaining is only hurting you.”

“Just forgive.”

Stop being so negative”

You don’t look sick”

You just need to exercise more.”

“Pain is unavoidable, suffering is optional

Don’t give illness your attention by repeating the story of it over and over again. Focus your attention on other positive areas and often illness will get the hint and go away.” J.J. Goldwag

I highlighted the key subtexts in red to signify that while these statements may appear on the surface to be supportive they in fact contain messages that undermine one’s sense of self-worth, leave the person feeling inadequate, wrong, or as though they brought the condition on themselves or are somehow to blame for it or are not doing their lives “right”.

These are words of judgment, not of support, and we  need to recognize what’s being passed along and the messages they contain which are toxic to others who are going through legitimately hard life circumstances. Platitudes are not what people need when in pain, when symptoms are at a fever pitch, and on those days when everything’s just too much. To family, friends, and supporters; Just giving the person a hug or acknowledging the validity of their struggle goes a long way. Don’t tell them to stop, because if they could they would. This is what they’re going through in real time.

There is no such thing as a good or bad way to feel about one’s illness or disability. Feelings just are and no they’re not like a water faucet. Only sociopaths can turn them off at will. For the rest of us we get over them when we get over them…in our own time-frame, and that’s OK.

Sometimes achieving a greater sense of peace requires better medical treatment for the condition and when the pain subsides the irritability or fear subsides. Sometimes other factors are keeping the person in a state of unrest and it won’t let up until those factors are ameliorated. Things are not always as simple as they appear.

Anybody who tries to tell you that you should just make up your mind “not to feel this way or that way” and tries to imply that when and how they think you should and if you can’t do that then you’re not good enough is not being truly supportive.

Anyone who tells you that you need to change to see or do things their way in order to be acceptable is not loving you unselfishly and they’re not valuing you for who you are. Your process is exactly that; yours. People need to respect that.

The image of the impenetrable stoic ill or disabled person is a hollywood image that no real person can ever live up to.

The person who never cries, never lets them see you sweat, never shows you their down days, the days when they can’t take it anymore, who only lives and speaks in positive affirmations, never gets irritated, never asks for anything, and never gets scared, and always gets things done yesterday simply doesn’t exist. Not being that completely mythical person doesn’t make you weak, it makes you strong because you’re authentic; not hiding behind a mask just to make those around you comfortable.

Sometimes it seems that being kind is a weakness, because of all the cruelty in this world. But being kind it's who you are and the people who love you, love you because you are you. Click on this image to see the biggest selection of life tips and positive quotes!:

Chronic illness and the societal expectations that go along with it are hard. Whether it takes you 1 day or 6 years to feel better it is not your fault. You’re doing the best you can with what you have to work with. Let them see the pain you live with because that’s the only way to make the invisible visible and believe it or not it helps all of us and helps the non-ill to understand and to develop empathy. This in turn will make the world a kinder and more compassionate place, not only for us but for the generations that come after.

The best gift we can give to others in this community of chronically ill/people with disabilities is not to pass on those harsh judgments and expectations we get from the rest of the community at large, not to project them onto our bothers and sisters, because to do so leaves others in a very desolate place and in the end hurts everyone.

There are those among us who are the soldiers in civilian life, those who live out loud in order to make things easier for the next chronically ill person or person with a disability. While the harder aspects of our private lives are not pretty these are individuals who sacrifice so that others who feel more comfortable playing it safe won’t have to. They are not complainers. You never know when you might receive a badly needed medication, service, test, or treatment because of the efforts of activists within this community.

On a personal note; I heard today from the nurse doing assessment for one of the Medicaid waiver programs and also got an unexpected phone call from a mobile doctor’s office affiliated with another program I’d applied for and both will be out tomorrow. It sounded as though there’s a possibility that the mobile doctor’s office could order the IV Saline treatment. I told the woman on the phone my situation about having gone untreated for the past 4 months and that I’m a little leery of doctors right now. Apparently there are two doctors, I believe, one African with a name that was nearly unpronounceable and one Hispanic, and several nurse practitioners working for the company which is a mom and pop operation. I didn’t even know there were places like this anymore that made house calls. The husband and wife owners are the ones coming out here around noon to get me established.

Today I’ve been having quite a bit of pain and pressure in my jaw. The TMJ seems to be getting worse, and so do the GI problems. Now it’s as much upper as lower GI upset. It’s taken all day before those died down enough to eat. I need to really have the Gastroenterologist to check me for Gastroparesis. More and more frequently my food is not digesting and instead sitting and fermenting in my stomach.

Preparing for the Transfer

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I know nothing stays the same, but if you’re willing to play the game it will be coming around again. So don’t mind if I fall apart, there’s more room in a broken heart…Carly Simon

The day before yesterday was one hell of a day. The appointment with my pulmonologist was to some extent a repeat performance of my last meeting with my GP.

Some may think that because this blog’s focus is on experiences (often bad) in the healthcare system and on patient’s rights that I am just angry, but in truth I’m not. Emotions are part and parcel of the human condition and I don’t shy away from them, but what I feel is more frustration, fear, and grief that although it would be so easy in this situation for those in positions of authority to make things right, instead they make the decision not to at every turn, and in their opposition they prolong physical suffering unnecessarily.

Doctors, when you see signs of disease document them, don’t just have verbal conversations with the patient and not put down a diagnosis if treatment depends on it. If you discover later there were procedural mistakes, then for Godsake amend the record! Untreated disease will continue to tap you on the shoulder until something’s done about it. It waits for noone. Leaving the patient on their own with it to twist in the wind is never the answer. If I seem a bit on edge at times, then this is why.

If you’ve ever had a pet who is injured you will understand. They may bite if you try to pick them up, not out of anger but because they’re protecting the part of their body that hurts. It is just instinct; not intent. Humans as well become quite to the point when there’s little more time to waste. This is nature’s way of motivating us to stay on task to find a way out of peril so that we can survive. When the struggle for self-preservation stops then you really have to worry.

While I am an activist this is not all that I am. Some may view me as a radical but if that’s all they see then I haven’t communicated my point effectively. I’m a mother, an animal lover, an artist, and a writer.  (The broken heart at the top is a component I cast in 22 Kt. gold years ago from a mold of my own design. The line created from it was about regeneration in the face of adversity). Most of all at the core I am soft-hearted and fundamentally believe in the goodness of people and man’s ability to change and transform. I also believe that not everyone’s path is the same, nor should it be, as we are all individuals.

I am more apt to assume that people are with me when they aren’t than the other way around. It is actually because at the core I think positively that I am like this. This is why I often give people in my life maybe more chances than I should.

I try to stay on topic in this blog because the atrocities that take place within healthcare are what I’m trying to shine a light on so that there can be social change. While I am telling my story, this is not just about me, but about so many people who, like me, end up sidelined because of a broken system that leaves little room for tolerance of differences, individual needs, and those who don’t fit the mold of what doctors, insurance regulations, and levels of government who set the laws and rules dictate. There is no manual for the human body and yet there persists the false expectation that there is within the medical field.

The chubby black nurse with lots of tiny braids came in and took my blood pressure, charted a few stats on the computer and then handed me the standard sleep questionnaire to fill out, watching me impatiently.

“He’s running on schedule so I don’t want it to eat up your time. He can’t spend an hour with you” she blurted out rudely.

I narrowed my eyes at her not knowing what brought that on. I never knew how to fill those things out anyway as my sleep/wake pattern is all screwed up from day to day. She told me to average it out, her voice growing ever more impatient.

“Is Z here today?” (another nurse) I asked her.

“No” she replied. “She’s off for a few days.”  I thought back to our last phone conversation and suddenly had an uneasy feeling.  I’d told her what had recently transpired and told her that I was going to need the pulmonologist to take over all the order writing. She understood. There was no mistake about it. She’d been open and empathetic and she was hearing me in a way she hadn’t ever before. When I asked for verification she said “Yes Ma’am” in a way that conveyed that now she understood the gravity of what I was up against.

In the past she’d told me this doctor thought for himself and didn’t think he’d buy into the buzz, but in this last conversation I remember telling her I was glad he was not one to buy into group-speak and that he was the only one left, that I was glad that he at least believed me. On that she didn’t respond to reassure me as she usually had.

I never got a call back from her regarding his answer. Then about 4 or 5 days later (the day he’d refused to do the two referrals) another nurse had responded on his behalf on the Patient Portal. When I’d asked where Z was I was told she’d asked off.

Did she know what awaited me at my upcoming appointment? Perhaps she did and couldn’t bear to be there to watch what was about to unfold and didn’t want to go along with hurting me.

Once the nurse in the office left the room with the clipboard in hand I waited in anticipation that at least he was still with me as he’d indicated on the Patient Portal…or so I hoped.

Medicine is more than the mechanical fixing of bodies. It’s about a partnership between doctor and patient and when one is chronically ill this becomes even more crucial. Often along the way that human aspect gets lost in the process. Above all patients need hope when going through a difficult and long diagnostic process and they need to know that whatever happens their doctor is there for them.

The other day even though he’d refused to write the two referrals I’d sent him the information on (Vanderbilt and the Undiagnosed Diseases Network), I still thought positively that he hadn’t diverged from me. Maybe he just wanted to see me in-person before writing any orders or referrals, I reasoned, or maybe he just felt that it was the GP who should have done this. I tried to believe that there was a reasonable explanation in every way I could.

Not long after the nurse had left he knocked briefly and entered the room.

His face was red at the top of his cheeks just under his eyes. Because I am close with him I knew that was a tell. Even still I powered through, tried my best to ignore it, thinking maybe it was just a temporary bump in the road. I had a smile on my face because I was genuinely happy to see him and I still considered him a confidant until such time as I knew otherwise. I was willing to give him a chance, to hear him out before passing any judgment. Even with some weird vibes I was picking up I couldn’t switch gears that fast and suddenly be unhappy with him. There was a history there. He had helped me in the past, maybe more than any of the doctors at Emory. I had the impression he genuinely cared.

“How are you” he asked looking at me from across the room as he sat down in his chair. He made eye contact, but I just couldn’t block out the distracting reddening in his cheeks and kept looking there instead of his eyes.

“Not good. I’ve been feeling pretty bad with this Dysautonomia not treated for the past several months. I’ve nearly passed out several times in the past two weeks.”

“You’re smiling” he said, nodding. I didn’t exactly know what to say to this or why that was significant to him. I grappled as best as I could to find the words, but failed miserably in fully explaining. I communicate better in writing than I do verbally.

“Well things went well yesterday. The nurse practitioner told me that she didn’t think I was nuts, and apparently Dr. V validated my Dysautonomia, so that’s progress.”

“You’re smiling” he said again, a little louder this time, almost cutting into the end of my sentence. I wanted to ask him what his point was but I didn’t know how. It was as though my brain stopped for a moment. I could think it but the words wouldn’t come out of my mouth. In the time I’ve known him I have grown very attached to him and in the past he has always been willing to do whatever he could to help me. All I had to do was ask. I told him just the other day on the Patient Portal how much I appreciated that, and suddenly as if the rug were pulled out from under me all that was gone.

I tried to push the gnawing insecurities aside in favor of logic. How could a strongly positive doctor/patient relationship go from 100 to zero in just a week’s time, I wondered? As I sat there across from him something didn’t feel quite the same.

“What is your understanding of the situation right now?” he asked. “Do you think Neurology is moving forward in getting the answers?” It was one of those statements masquerading as a question. I could feel it yet was unsure exactly what he was going to say although I grasped that it wasn’t good.

“Well it’s too early to know for sure. I just started with them, but Dr. V. definitely picked up on something of the underlying condition. She just isn’t sure what it is yet. She’s only seen me once, so hasn’t even had time to investigate very far before going on maternity leave.”

The pulmonologist shifted in his chair from side to side, not a good sign. “She was hanging her hopes on it being the Sarcoidosis.”

“Yes, and it turned out not to be that” I answered the question for him. The red in his cheeks continued to spread outward. “The Gallium Scan was clean” he said with almost an eeriness in his voice.

That meant it wasn’t in acute flair but he seemed to have a much more ominous take on it.

The significance for him seemed to take on an almost supernatural quality to it and I could tell it scared him. We live in the bible belt here in Georgia and one always has to consider that doctors in this part of the country may read in a religious significance to explain things that as of yet are medically unexplainable. That is yet another variable that can and does interfere with trust within the doctor/patient relationship; the good vs evil dichotomy.

“It was the inconsistency in the exam that concerned me” said the Pulmonologist, his cheeks reddening further. At this point he was looking kind of ill himself. I knew what he was thinking because doctors are trained that way.

I felt the need to reassure him that I had not been taken over by some strange evil force and that there was and is a reasonable explanation, that we just needed to find out what that is. There is a confounding variable neither he nor Dr. V were taking into account which elicits inconsistency in an exam, but the growing sense of mistrust and feeling of utter futility held me back from telling him what it was. I opted for the simpler of explanations.

“This is just the beginning”, I continued. She’s just started with me. Sometimes it can take as many as 6-8 years for patients to be diagnosed. I sure hope it won’t take that long for me, but the point is that alot of people go through this. It’s not that uncommon for things like that to come out negative or inconsistent, but at least they can start by treating the Dysautonomia since they know that the Saline helped when I was at Piedmont. That would be a start.”

It was all he could do to stay put in his chair. He seemed to be grappling within himself pulling to one side, then the other. I could imagine opposing dialogue going on in his head.

“You keep coming up with that word; Dysautonomia!” his speech accelerating and growing in urgency. “There’s no evidence of Dysautonomia.” (pregnant pause) “that’s your perception. That came from you. She said by patient report.”

“What do you mean no evidence? “It came from Piedmont” I replied. “Didn’t you see the BP stats that were entered into the electronic records system? My blood pressure was all over the map for 11 days, measuring it 6 times a day!”

“That could be anything. A cardiologist would have to determine what that is….and you need to consider that this could also be…psychological. I would recommend seeing a Psychiatrist and a Cardiologist.”

“Well it sure isn’t in my head. Believe me, I went that route first, as I had problems on my left side a number of years ago. The therapist suggested I get it medically checked out because she didn’t think it was psychological.”

“It can reoccur.” he replied ignoring the fact that I’d said it had been ruled out.

“Blood pooling in my feet? Pictures I sent Dr. B. on the portal.”

There’s no evidence of Dysautonomia. That’s your perception. They have to do tests for that!” at this point seeing he was losing this argument but sticking to his story so as not to lose face.

“They should have done that testing 4 months ago. I’ve been telling people this since I was discharged from Piedmont in November. The doctor there had a conversation with me about this. It didn’t come from me, it came from him. He just didn’t document it and I didn’t know that until I got the records later. I believe it’s secondary and that it and the movement disorder are all part of the same syndrome. They need to find the underlying condition.”

“If there is one. Why not see a Cardiologist?”, he said.

“I could. That’s another reason to go to Vanderbilt. They have specialists there and I’m sure they have Cardiologists there as well as Neurologists.”

“You could see one here… or at any place locally. You don’t need to go out of town for that.” I wondered why he was so wedded to the idea that I stay here in town for such an evaluation.

“The thing is if I went to just any Cardiologist they may be too general to recognize this. Many Cardiologists are generalists and they have many other heart related disorders to focus on. I need an expert who knows what to look for.”

“I would recommend doing it here.” I’m sure he would, I thought, beginning to feel as though he wanted to control the situation. Odd, given the fact that just a few days previously he’d taken a hands-off approach.

“Then my chronic constipation, the fact that I’m thirsty constantly, how can you say there’s no evidence?”

“That could be dehydration. Dysautonomia is extremely rare statistically.” He seemed genuinely afraid and holding onto this denial for dear life, like a security blanket, although I wasn’t sure why. The whole time we’d been talking I was drinking water and sucking on ice cubes.

“Well why am I dehydrated? As you can see I’m drinking ice water constantly. I have a cup with me at all times and yet I’m still thirsty.” He was out of excuses and just looked at me seemingly frustrated. He asked about Dr. B. and I said “He’s gone.”

“Gone? What do you mean?”

“I mean out of the picture; gone” I did not elaborate.

“He’s not your primary anymore?”

“No, he was doing me more harm than good anyway. You see, nothing was moving. My treatment was going nowhere. I tried to tell him but he wouldn’t listen. I’ve been untreated for almost 4 months now and I can’t wait much longer. It’s getting worse.”

“Untreated for what?

Dysautonomia.”

“And you really think Neurology is helping you?”

“According to the Nurse Practitioner she is supposed to be good and I was told she thinks outside the box. I figured I’d give her a chance.”

“OK then, I’ll take a back seat to Neurology then and just follow what they’re doing with you.” he replied seeming somewhat offended or hurt, I couldn’t tell exactly which. “I still think you should see a psychiatrist” he threw in for good measure.

“I just don’t want to cloud the issue. I want this looked at on it’s merits. There are several problems in seeing a psychiatrist. Every specialty tends to look for what they specialize in and they can’t bill insurance for situational problems so that motivates them to fudge and give you a psych diagnosis when you really don’t meet the criteria. Would it make any difference at all if a psychiatrist wrote a letter saying that what is going on with me is not psychiatric but medical?”

“Yes” he said emphatically, “It would help alot”. Somehow his words rang hollow as soon as they’d been spoken. I found it hard to believe that he could ever go back to the way things were before. A line had been crossed and another rung of trust broken. Even if he could go back I couldn’t. It scared me that he could so easily go from supporting me 100% to being so determined not to support me. It was like the air let out of a balloon. Knowing that deep down he was not trying to rule it out but rule it in was what hurt most of all. The way he looked at me just killed me; a mix of irritation, amusement, and pity as though I had wasted his time.

“I feel like you don’t believe me” I said. I wasn’t smiling now.

His face clouded over and he looked through me rather than at me. “Ms. Carlington” he said with a forced new formality “I need to move on” he stated dismissively looking somewhere to my right, then avoiding my eyes and looking to my left.

The first level I perceived right away (move on as in to his next patient), but then I picked up something on a deeper level.

He was officially uninvesting himself in me and though I was still technically his patient I’d clearly been relegated to the cutting-room floor.

A thousand pieces of paper wouldn’t change anything now with his resolute mind-set and knowing, that psych is a soft science and based more on individual clinical opinion than provable fact, to take that particular piece of advice and gamble with my future could put the last nail in my coffin.

 As both of us exited, he to the left, and me to the right he called back over his shoulder that I should really get a new Primary Care physician to coordinate all these specialists and I told him that with managed care and heavy caseloads I really don’t know if one would, so I wasn’t in any great hurry to do that. It didn’t work out for me the last time. He said that’s what they’re supposed to do. Yes, I thought, they are supposed to.

I went to the front checkout desk where the young receptionist with the long wavy black hair and black-rimmed glasses greeted me with their customary “Did you have a nice visit?”

“No, not so much. Not this time. I feel a bit uneasy.” She got on the phone to ask the doctor when to schedule me for my next appointment.

“Six Months” she said as she turned toward me. I winced. (It was usually more like 2-3), but still feeling that sense of futility I didn’t ask her to make it earlier, only asked if I could if I needed to, and she said yes, that he was here 5 days a week and if need be it wouldn’t be hard to get an appointment should something come up.

Yesterday Dr. V finally responded through her Nurse Practitioner, but since she’d not heard of the IV Saline treatment she told her she wouldn’t authorize her to write the order “at this time”.  None of the other items on my list of priorities (other than the med refills) had been addressed, so I wrote back and asked if she had authorized her writing the referral to Vanderbilt, and provided her several pieces of information about the treatment and contact info for two specialists familiar with it.

Yesterday I got the name of a guy at another specialty clinic out of state and am waiting to hear back, as he is out for the week. The office is supposed to call when he returns. All the pre-registration was taken care of over the phone. If I don’t see some action out of Emory Neurology soon I’ll go that route, as he seems to have diagnosed lots of people who had the same experience I’m having now and there you don’t have to have a referral. As gut-wrenching as it is to be losing doctors I’ve known for years locally I wonder if maybe, just maybe with doors closing at Emory, another window is about to open.