After the Storm; Shoring Up Safety

  I contacted E today to let her know what was going on and to ask that she tell the front desk people not to let this aid come back there in case she should pull this stunt again. I … Continue reading

Talk To The Hand; Narcissistic CNA Tries To Micromanage My OT Appointment

I notified E by phone of what had happened at the other office and told her I didn’t want the other OT’s opinion to influence her in any way, and she assured me it wouldn’t change the way the two … Continue reading

Adding Insult To Injury; Painful OT

Several months ago my finger got injured and then infected during the height of he COVID-19 lockdown. It was the worst possible time to have a serious injury. X-rays showed that it developed septic arthritis in the PIP joint but they could not tell how serious the soft tissue damage was. My GP, hoping it would heal on its own had gone to doing telemedicine only tried to look at it as best as she could on video chat, prescribing several rounds of antibiotics.  She was afraid to send me to the ER even though that’s the usual procedure, because of my high risk of catching the Corona virus. When it remained swollen and was becoming stiff she then recommended I see a hand specialist. I was sent to the wrong place that as it turned out had no doctor on site, so I scheduled with a different clinic that sounded as though they knew what they were doing.

The first doctor blithely looked over my finger, then forced it closed, and said he didn’t think the tendon was fully severed but might be partially, and said when asked what he thought was causing it not to be able to bend “I’m not God, honey, I won’t know unless I open it up and it’s been 4 weeks so why not go to physical therapy for a month and then re-evaluate.” There was a huge lump on the top of my finger that looked like hypertrophy but it wasn’t, and that seemed to be what the obstruction was, at least in part. I followed his advice and set up twice a week appointments for hand therapy. I didn’t have alot of pain at that point, but I can’t say I saw much improvement. It just simply would not close no matter what I did. After about 2 weeks there was still alot of swelling. I noticed that when it was wrapped it went down but a little while after I took the wrapping off it puffed right back up again. The therapist who was working with me (I’ll call her E) noticed it too. Both of us had the growing feeling that something in there was still broken. I didn’t have alot of confidence in the first doctor, so I asked to be switched to another one who had really good reviews. He turned out to be great; had a good bedside manner, and also seemed technically good. He ordered an MRI and said there was alot of inflammation throughout the finger but he couldn’t really see clearly enough to see everything inside, so since physical therapy really wasn’t showing an improvement after several weeks he scheduled surgery.

First try ended up being a no-go. Being at an outpatient surgery center next to the office, the anesthesiologist got cold feet 5 minutes before I was to go into the OR because of my Dysautonomia. He said that they really didn’t have the equipment in case something went wrong, so said I’d have to have it done at the hospital.

Things here in Georgia were just starting to open back up, so all hospitals were requiring people scheduled for surgery to have a COVID test within 72 hours of their procedure. I had to have a friend from a distance away take me since medical transportation told me they don’t do drive-throughs.

The day of the test I thought, no problem. Easy-peasey. Just a swab in the nose and it’s all done. I had had swabs of my throat before and they weren’t too bad, but boy was I wrong! When we drove up through the testing station a man who was a doctor connected with Gwinnet Hospital dressed in a full Hazmat suit approached the car. “Which one of you is being tested? he asked. I told him it was me. He came around to the passenger’s side and told me to look up at the ceiling. He pulled out a long swab about a foot long, and stuck it up my nose and back towards the back of my head. It had to have gone in about 6 inches from what I could see. It felt like I had no skin in that area and almost as if he hit a raw nerve ending. It hurt like HELL! After counting to 5 he pulled it out. I thought he was done, but then pulled out another swab and took a sample from the other nostril. I felt as though I might faint. Things got swimmy and I got somewhat disoriented for a few minutes.

The day of surgery my aid and I arrived at the hospital in a van spewing fumes. It was one of the subcontractors arranged by the transportation broker. The hospital was pretty fast and got me into the back without much of a wait. There two nurses greeted me, asked me a bunch of medical history questions and one of them went to start an IV. I didn’t realize until she couldn’t find a vein that she was in training. At that point I can always tell because I never have problems with getting an IV in the first time if the person knows what they’re doing. She probably tried 2 times in some of the worst areas, then the senior nurse told her to use some lidocaine. That worked, saving my poor wrist and hand on the left side from further agony.

The surgeon was running late, but came in carrying what looked like mini trunks which I can only assume he used to carry his tools. I spoke with him about the procedure details and then the anesthesiologist. Because of my Autonomic Dysfunction they wanted to avoid putting me under general anesthesia but I did not want just a local because I didn’t think I could handle being conscious while my finger was being cut upon, so they did sedation. I was a little worried I’d wake up in the middle since that had happened when I had a colonoscopy at Emory, but luckily I stayed out the whole time and was not aware of anything until the operation was done and I was all stitched up. I awoke in the recovery room and they were transferring me back to the room where I had been prepped.

The surgeon came in and explained to me that he had found a tendon that was 50% severed, so in addition to removing the big lump of tissue on the top of my finger and scar tissue underneath, he had to sew up the tendon which had been engulfed in scar tissue and had been pulling it open further and further over time. Chances are the earlier physical therapy and exercises at home had just been fraying the edges more and more, so it was a good thing I had surgery when I did, as it might have eventually snapped completely, as tendons cannot heal on their own. Though my body did its damnedest to try all it did was result in a tangled mess of tissue that served only as an impedance.

It is 6 weeks now since my surgery and the splint came off last week. Overall OT has been going well; no problems… until last week. I had a rather jarring experience and have been researching what to do and came across an OT blog called My OT Spot about how OTs should handle when a patient refuses. In the blog post the writer gave examples of reasons why patients refuse a treatment. Having just come home from my appointment it struck me that she left out one very important reason…when the pain induced is intolerable. I’m posting this in my blog first since I think it’s fitting to my topic of horrors in the US healthcare system, but then posted it in her comment section.

Here it is below;

You left out one very important reason patients refuse; excruciating, intolerable pain. I go to a hand clinic for OT after having surgery to repair a 50% severed tendon in my index finger and to clean out scar tissue that was binding it up from being able to close. This clinic has several locations but only one has infrared, so I go to that one on Tuesdays, and the other on Thursdays. The therapist I see on Thursdays is very gentle and respectful, but the one at the other office is overly rough and impervious to when she’s going too far with something. Everybody knows it, too and half-joking; half serious talk about it while they’re in there! Last week she went to do the scar massage that is usually done with the hands, but instead pulled out this hard plastic tool and started digging really hard into the base of my finger and the knuckle on the palm. She was digging in HARD. This was not “uncomfortable”, “slightly painful”, “tender” , “sore” or anything like that. It was absolutely unbearable; I’m talking about 20 on the pain scale, no exaggeration! My whole body was trembling and retracting involuntarily and I started to lose consciousness. Only then did she stop. I left very shaken up, and thought, this can’t be legit. Either she must be badly trained or some sort of sadist. I left there saying to myself, never again.

Then she happened to show up at my other appointment as a floater to help out my other one and she must have charted something because the gentler one said to her she didn’t want me doing anything too aggressive. I thought that resolved it, but today she tried it again. I very clearly said “No, don’t use that. I can’t take it. Use your hands.” She kept arguing and insisting and actually said to me “It’s GOING to HAPPEN.” I have read the ethics standards for OTs and it clearly says they are not to force things on a patient. And I have read that they are not to coerce in addition. I felt like she really might fight me if I tried to leave the room. It’s hard to know what to say to something like that. I just explained to her rationally that it did not seem to be worth all that pain, as my finger got rock hard afterwards and felt bruised for days. She didn’t apologize for hurting me nor take any responsibility for trying another option, but instead acted like it had to be done and there was no other way. She was taking that drill sergeant stance you used as an example in your article. None of that was making me feel any more convinced nor at ease. I felt assaulted and cornered. She seemed to see it as a battle of wills when in fact it was not. I have not refused anything else they’ve asked me to do there but don’t want to injure myself further by subjecting myself to something that really has almost no studies proving it’s safe and effective and for which I was able to find no set standards of care. She was not able to tell me which protocol she was using (upon my later reading it appears to be either Graston or Gua Sha) nor offer any alternative ways to address scar tissue instead, and she could not really tell me how deep the internal part of the scar went that necessitated such drastic aggressive treatment. Her answer was that you can feel it when the thing goes over it. I asked her to show me with her fingers how deep it goes. When she did at less than 1/4 inch it seemed not so urgent after all for her to be in such a rush to go to these aggressive lengths. She tried to scare me further by telling me “it’s soft now but it will get hard, it can stick to and restrict your joint and you won’t be able to move it.” I am already having ultrasound and infrared and doing all sorts of exercises. It just struck me as very creepy just how hell bent she was to do this one thing, as if she was intent on doing it BECAUSE it was unbearably painful, not merely in spite of it. Now she is going to call my main one, “E” that I see on Thursday to try to coerce her to be more aggressive. Up until now I’ve had mostly good experiences with this clinic but I may have to find another one if she continues in this direction, as this really doesn’t sit well with me. Her only suggestion was to “just breathe through it.” You can’t breathe through that level of pain. My first thought is maybe she could apply at GITMO. I’m sure those people would talk after that, LOL.

Living in The Wrong State for Treatment of Rare Conditions

Ever feel like you’re simply living in the wrong state to access the treatment you need for your condition? You may be right. There are lots of factors that enter into the equation which determine access to appropriate care; insurance … Continue reading

Two Years Later and Nowhere Closer-Another Doctor Refuses to Bridge The Gap

I haven’t written much here lately about how things have been going as far as getting to Vanderbilt Autonomic Clinic, because I was under the impression that it was just a matter of time and having my current GP fill … Continue reading

Fatigue; Here’s A Great Analogy and Some Examples

ill

 Ken McKim, the husband of a woman with Crohn’s disease likens fatigue to if a healthy person went around chronically sleep deprived (but at least in their case they can sleep extra and improve their situation), whereas with fatigue we can’t.
5 Till 6
He proposes that healthy people do an experiment for one week in which they stay up all night except for 4 hours and the next day do all their normal activities, then when they go to bed set their alarm to go off every hour and stay up for 10 minutes each time they turn it off before going back to sleep.
He says that by the end of such an experiment one should have more empathy as to what those of us with fatigue go through. It occurred to me that this would be a good experiment for all medical students because even with all their cramming for exams they probably still don’t get the full effect of what it’s like to have a chronic illness.
Doctor let down
I woke up this morning and took a shower, and felt alert just long enough to eat some breakfast, but as soon as that was over my energy drained away again. I again felt exhausted and have been finding it hard not to drift off to sleep without warning in the middle of swhatever I’m doing. I go from being exhausted but awake to suddenly finding that I’ve drifted off (only after I’ve done so and wake up).
Atlas Statue
Back when I was seeing the sleep medicine specialist at Emory I was supposed to have a daytime sleep study to rule out Narcolepsy but in order to do that you had to sleep 6 hours first and at the time I couldn’t do it because of the myoclonus keeping me from falling asleep and then once I did, people were tinkering with equipment in my room waking me up because of the noise and light coming in the door.
Looking up at doctors after fainting
Nevertheless I can make a pretty educated guess that the fatigue caused by my chronic illness has alot to do with these sleep cycle abnormalities, particularly the central nervous system problems I have which affect the autonomic nervous system. In order for the brain to function correctly it first must have enough energy. The nighttime sleep studies I had did yield some important information in that my sleep/wake cycle is royally messed up showing Delta waves at the beginning (even before falling asleep) when they are only supposed to be showing up in the last sleep stage.
brain waves on screen
This was also documented in just about every EEG I’ve ever had since second grade when I was first brought to a neurologist because of near fainting spells. Some research has proposed that there may be a mitochondrial component to the severe fatigue suffered by people with chronic illnesses.
in bed
PubMed has numerous papers that have been published on the subject and in recent years there have been more and more scientists interested in this angle. The papers shown under the search Mitochondrial Component to Fatigue will bring up papers you can look through and print out those you feel pertinent to give to your doctor. It is not uncommon for doctors to try to dismiss research as being from “junk science journals” etc., but the papers linked in PubMed are considered fully legitimate professional medical journal articles from all over the world.
GQ Style Doctor
Don’t accept a doctor’s sweeping generalization that because studies were published in foreign journals outside the United States (or outside your country if you live elsewhere) that they are not legitimate sources. There are many fine and well designed and documented studies that come out of places like the Netherlands, Australia, and even Asian countries or India. You’d be surprised where some of the most cutting edge research comes from.
Never Settle
Also, don’t be afraid to write some of the investigators listed on these research teams. They often provide an email address in order to give the public an oppourtunity to communicate with them and ask questions. By doing so you just might find out about important studies that are accepting participants that would benefit people with your condition and these scientists might even have suggestions that your doctor can try to treat your condition more effectively right now!

If your doctor is offended by this and unwilling to discuss these new approaches with you, chances are you have the wrong doctor.

Dishonest Doctor
Remember that if you have severe fatigue you only have so much energy to work with in a day and a truly good doctor will understand this and respect and appreciate the fact that you put in the time to take an active role in your healthcare and bring him this written material. If he/she truly has your best interest at heart he/she will then genuinely look into these options for diagnosis and/or treatment and will take the legwork from there.
Blindfolded-159623
Way too often we as patients end up doing their jobs for them because of their stubborness and inflated ego, because they have too much false pride to admit when they need to consult professionals who know more than they do.
Doctors in rounds
This is when the relationship becomes more about their needs than yours and if after trying to present them with this information they reject it out of hand more than a few times, it is likely that they ultimately won’t give you the care you need and deserve.

It should never be OK with a doctor to allow you to suffer any more than absolutely necessary and if there are still options left not to use them.

I had to learn that after I nearly wore myself out because I found myself working harder than my GP at Emory. At first when things weren’t getting completed and questions weren’t answered I thought maybe it just slipped his mind because of his patient load or the time got away from him, but I am very conscienscous about following up and at some point had to face the fact that my doctor was not the benevolent and altruistic person I thought he was and that chances are no amount of education was going to change that.

Any doctor that takes patient reports out of the equation might as well just turn in his medical license right now because he’s no longer acting in the patient’s best interest, he is treating his patient as an inanimate object.

For a chronically ill highly educated patient (which most of us become after so many years) it is imperative to have a doctor who bottom line accepts that this is the patients’ body and that with their being a competent adult over the age of 18 only the patient has the right to make the ultimate decision in treatment. A doctor can only advise based on his training. He cannot be inside your body to prove what your body is experiencing and how it affects you, nor how much suffering you can stand. Objective testing is only a tool and physicians have to realize that it can’t always detect everything beyond a shadow of a doubt. It has its limitations, and the clinical presentation is equally, if not more important in assessing what’s going on medically.
Doctor giving bad news
Prolonged fatigue is one of those symptoms that science does not have the knowledge to fully quantify, nevertheless it is very real and cannot be dismissed as psychological, or irrelevant information. To do so is very dangerous, because fatigue is a very good indicator that something is in fact seriously wrong in the body.
Healthy patients do not have this level of fatigue, and the distinction between fatigue and depression, for instance, is that patients with fatigue want to do things, they wish they could, but just don’t have the stamina. People who are depressed generally lose interest in hobbies and things they liked to do previously.
Creating
I can attest to this distinction, as I have interests that have continued throughout my illness and I remain enthusiastic and interested in them. It bothers me when I can only watch them in videos and not partcipate because of my level of illness.  I am fatigued yet I’m anything but apathetic. I love life and look at each day as an adventure!
Inspired Woman
An example is this; I absolutely love snakes and have two Ball Pythons. Many of the people I’m involved with online surrounding this interest travel to reptile shows where they can pick out snakes and supplies and caging for them in-person and meet up. I would really love to do that, but seeing as there are only two a year a distance away outside Atlanta, (in Cobb County) I have problems getting there with handicap transportation, and it tacks at least 2 more hours onto my day including a transfer to another county service if I were to book the trip. (Not to mention it costs double fare).
precariously holding boxes
Then if I were to stay a decent number of hours to be able to see everything, I would be sicker by the time I returned home. If I went in somebody’s car I could leave when I became too exhausted, but on public transit you can’t do that. (A time is prearranged to return and if you need to leave earlier they will not accommodate you no matter how ill you are).
Navigation
I would love to go to the big reptile show at Tinley Park (in Illinois) but not only am I not able to afford the travel and hotel for several days, the travel itself would be too taxing for me right now.
woman-blowing-nose
Another example; I really love art and have been trying to come up with other forms of art I can make that don’t require so much fine motor dexterity and although I’ve found some that are easier for my hands when I actually began doing these projects I found them to be incredibly exhausting and take me much longer than they should. I actually sweat with the effort it requires, and either really pay for it in the several days that follow or have to stop before I get it done. This is very frustrating because my motivation is still there but I can’t complete the task or at the times I do I do it with great negative consequences.
Shoveling coins
My best guess in treating fatigue would be to use compounds that directly address a mitochondrial disconnect, so if any of you reading this find new developments in this area of science please feel free to post them here in the comments, as it might really help others suffering with the same barriers. Please post sources if you can.
Barrier
Somehow the patient community must get these ideas across to doctors in clinical practice so that rather than disengaging from us when our illness is prolonged they look at it as something worth working on. Even if a cure is not close by, there can be a sense of accomplishment for both patient and doctor by adopting an investigative approach and trying things even if just based on theory.
Interview
Sooner or later improvement will likely happen with that type of perseverence. That is better than doing nothing, regarding the patient as hopeless and a “treatment failure”, and just tuning them out. That should never be the response to a complicated case. Just like pain, the continuing fatigue a patient experiences is a signal from the body that the doctor’s job is not complete.

The Problem With Medical Licensing Boards; The Sacred Cow Factor

A Georgia primary care doctor was still allowed to practice even after admitting to committing  3 sexual assaults upon patients in the process of his work. Dr. Harry McDonald was interviewed by journalist, Leighton Rowell of Channel 2 Action News … Continue reading

Larry Nassar Conviction and Sentencing; A Landmark Precedent-Setting Case for the Medically Abused

A well-known and respected Olympic doctor, Larry Nassar, was recently charged and convicted of numerous counts of sexual assault against his patients, mostly teenaged girls at the time of the incidents, some younger and some who are now college-age. It … Continue reading

Medical Identity Theft; Patients Placed at Risk Due To Outdated Security Measures

Did you know that your “confidential” medical information is worth 10 times more than your credit card number? Yes, there is much more to fear than just losing your name, address, and social security number. Recently I was notified by … Continue reading