The Dark Man

Shadow silhouette of a figure

Upon returning home on the evening of November 28th I was greeted by the strong stench of dog feces and urine coming from the kitchen. I had been under the impression that my son’s girlfriend’s father had been keeping Carmella, my dog, in Athens at a local dog spa and that she was being well cared for. I found her with a small dish of cheap dogfood  and what seemed to be a week’s worth of mess underneath the kitchen table. Near the garage door and laundry room was some bloody diarrhea that was nearly liquid.

Cleaning all this up while sitting in my wheelchair proved nearly impossible but I couldn’t just leave it there, so I did my best to stand and in doing so fell, almost landing in a puddle of urine. The smell was overpowering even after my best effort at cleaning, as the linoleum is porous unlike the type they used to make and absorbs like a sponge.

I was relieved to be home in my own bed, but the silence was deafening after the steady hum of conversation in the hallway at the hospital.

Sleeping was fitful and unrestorative between the residual odor emanating from the kitchen and my autonomic instability. 

Wires got crossed and home health didn’t show up until sometime later the following week, as apparently they had not been notified by the hospital that I’d been discharged.

By Thursday, December 3rd I was in a bad way. The night had been one of the worst since I’d been discharged from Piedmont and I called the home health agency as soon as they were open to ask that they send a nurse out, as I was feeling really faint along with nausea and the feeling that I was going to lose all bowel control at any moment. The Care Coordinator, Daria wasn’t in and somebody else was working that day in her place, and I was told they couldn’t get a nurse to my house on such short notice. The best this woman could advise me to do was to go to the Emergency room. I really didn’t want to but  didn’t know what else to do. The feeling was becoming intolerable and the woman on the other end of the phone was telling me I really should never have been discharged.

Reluctantly I dialed 911. Not long after, a black man and woman arrived. I was too ill even to get into my wheelchair so yelled for them to come in my back door. They finally heard me and entered the house that way.

I told them to take me to Emory since that was where my doctors worked, and I figured maybe I would give the place another chance even though their clinics had taken way too long to get me routed to the right care. I recounted how things had been moving at a snail’s pace, how surreal things had become on the Patient Portal with several doctors watching intently but none making a move to intervene, and how my GP had seemed at a loss, resorting to prayer now and saying very little.

The female paramedic seemed perplexed. “After that you want to go to Emory?”

“Yes, and don’t divert no matter what. Please hurry. I’m not feeling well at all” I responded.

 I’d tried going to another hospital and they’d spat me back to Emory anyway, so I thought maybe it was best that I have them follow through. At least my doctors were there and the ER could let them know where I was. Maybe, I thought, this nightmare was finally coming to an end. Little did I know, things were about to get alot worse.

The male paramedic began proselytizing about Jesus Christ and asking if and how I were “saved”, very inappropriate, but nevertheless I told him that given nothing else was working I’d tried that too and that wasn’t anymore effective than anything else. He went on about how you had to ask forgiveness and pray this way or that way in order to “be healed”. I thought this really must be hell I was in as the female was driving as though it were a Sunday and stopping at each light. It seemed as though I’d stumbled onto an alternate reality, or down some strange rabbit hole. I could hardly believe this was happening. I felt as though I were going to hurl and crap my pants all at the same time as the two paramedics immersed in their own world talked about eating pizza.

After what felt like ages we arrived at Emory’s ER. They took their time getting the gurney out of the back of the truck and wheeled me into the entrance.

After signing some paperwork and having blood drawn through what felt like a dull shovel crammed into my arm (an IV) by a middle-aged black woman with shoulder-length hair began making conversation with me. Other than the painful IV she was pleasant and made some small-talk noticing I had a birthday coming up and asked what I wished for,

“A new body” I half-way joked.

“Be careful what you wish for”, she replied cryptically. 

I quietly wondered why everything had to be assumed for the worst rather than for better.

Soon after she left, Dr. L.H. entered the room followed by a group of others. She was young with dark brown hair parted in the middle and an engaging personality. As the others milled around she positioned herself by the foot of my bed on the left side and asked what had been happening that brought me to the hospital. I struggled at first to get out the words but then they just sort of poured out of me, all the symptoms that had developed, how they accelerated recently, and how Emory seemed to be asleep at the wheel as I got more and more disabled until I could hardly care for myself anymore. 

“I’m so sorry” she replied. “We’re going to take care of you. I promise. We’re going to make this right. If there’s anything you need, food, water, or anything, just ask.” Her expression looked sincere, so I believed her.

I asked to speak with the social worker but she wouldn’t be in until around 10:00 AM. The woman filling in at the home healthcare agency had told me to have their social worker call them so she could advocate for me. Someone had put my handbag out of reach, I don’t remember when, but I couldn’t get to my laptop or a phone to call anyone, and I was so tired and agonized by the lower GI symptoms I was experiencing it was hard to process all that was going on. I needed to believe things were going to work out finally. They had to. I didn’t know how much longer I could take it.

It was nearly 2:00 PM before I was able to get the social worker and I asked for some food and medication for spasticity. She went to ask on my behalf and after she left it was quite awhile before a young, slim black nurse walked in with a pill in a small cup. I asked if it was Tizanidine and she told me no, (giving me a generic name I did not recognize), then when asked told me that it was some sort of Benzodiazipine. I gave her a  strange look and said I didn’t think that was an appropriate drug for my symptoms. She finally admitted it was Valium and I said, “No that that wasn’t going to address spasticity in my colon nor the spasticity I was having in the left instep of my foot. 

She told me that I couldn’t get an antispasmodic because those were “neurological medications” and had to be authorized by a neurologist. I wasn’t buying it. Never had I had such an experience in any ER in my life and I had an inkling something strange was going on although I didn’t yet know quite what. I asked to speak with the patient representative and she instead got the social worker again, who while she was understanding and admitted that I wasn’t being treated correctly, seemed to feel that her hands were tied, and eventually trailed off in frustration.

The young nurse returned with the Valium and insisted it would address the spasticity as it had muscle relaxant properties. Too tired to put up much of a fight I took it as it was all that was available at the moment. It didn’t help and I was so miserable with the constant fecal urgency that I felt like crying but my eyes were dry and I couldn’t shed a tear. An almost primal wail came out of me for hours until I fell asleep in utter exhaustion. No food came even after I called the nurse several times. She came in and asked whether the Valium helped and I told her no, that all it had done was put me to sleep but the spasticity remained. I asked again for an antispasmodic. Again she refused. Putting her hand defiantly on one hip she waggled her head and shoulder to try to defend her position, stating that although it might have put me to sleep it was not for sleep and that it does address spasticity. I told her that if that were so that only would it do so indirectly and that there are better medications for that; Tizanidine or Baclofen.

She left the room in a huff rolling her eyes and didn’t return for some time. No food was forthcoming but after ringing the buzzer about 3 times over a period of an hour or so more I finally got some water from another nurse or aid.

Sometime in the late afternoon a female resident, E.G., came to my bedside. She had a very pale face with dark circles and deep set eyes, almost  cadaver-like in appearance. At first she seemed cheerful as she told me she was doing her neurology rotation and somehow we got on the subject of my son (I can’t remember how), but I told her he had a D-Net tumor. She didn’t know what that was so I explained it was a benign clump of excess neural tissue that caused daily seizures, and said she would eventually learn that if she was planning on going into neurology. Then she took out her tools and decided she was going to do a neuro exam on me. This was where things started getting a little weird. At the time I really  didn’t know what to make of it but she started testing my reflexes in the right arm saying “You know the drill, you know the drill”, in an almost cursory yet condescending way. I remember thinking I wish they’d leave me alone already and practice on somebody else so I could go to sleep.

Then almost immediately after she was through doing that, in came a male attending ER doctor, T.T.J., MD (internal medicine) a stocky man with wavy brown hair tied back in a small poneytail who did his own neuro exam. He was glib and dismissive and seemed quite pleased with himself and couldn’t seem to understand why my not being able to bathe myself and care for myself would be bothersome to me, writing off my concern as “anxiety”, and attributing my chronic long-term constipation to the Tramadol although I’ve had it alot longer than I’ve been on the medication. I told him directly that I wouldn’t be minimizing this if I were him.

After he’d left the room I spoke with the social worker again, telling her I didn’t feel that this guy was being respectful and asked her to speak with my home healthcare agency. Again I asked for something to eat. She said she’d pass it on. I told her that with all that was going on and all I’d been through I didn’t know who to trust anymore. She told me I could trust Dr. H.

Finally Dr. H. came back in and told me I was going to be admitted at least overnight to their bridge unit, and that a female neurologist was going to be assigned to me. As she leaned her elbows on the bars of the gurney she said “We do care about you.” I could believe that she did but the royal “We?”, not so much. I was a long way from feeling reassured. Fighting through the pain and fatigue I was trying to make sense of it all.

After she left the room I waited for the female neurologist she spoke of to arrive but she never did. To this day I do not know why.

When Dr. H. came back she told me there’d been a change of plans and that there was going to be a different neurologist seeing me instead, a male whom she described as “an old traditionalist”. Just then a precarious feeling came over me. That didn’t sound like a good thing. I asked her if he had a problem with a strong woman and she told me no, that she was a strong woman.

Soon a transporter came with a wheelchair to take me to the unit. Once I was assigned to a room a nurse came in and took my vital signs. My blood pressure was somewhat high. I asked her to help me plug in my laptop so that I could notify some people as to what was happening. Once she left I found I was unable to connect to the network.

Around 6 or 7 PM, the neurologist Dr. P.R.M entered my room at Emory Hospital wearing a surgical mask (which I thought was bizarre anyway), accompanied by the same female resident who had seen me earlier.

Instantly I had a visceral feeling of dread. He looked tightly wound, with a mostly bald but oddly muscular head. Clenching his jaw seemed to isolate one muscle in his head at a time tensing and releasing in a strange pattern. He reminded me of a snorting angry bull on a hair trigger pawing at the dirt. He neither smiled nor attempted any niceties in his introduction.

Almost immediately he asked me rhetorically if I would turn off my laptop, and then actually reached over and closed it himself before turning off the overhead light and looking closely into my eyes with his pen light.

Dr. H. came into the room to the right of my bed. Dr. M. asked me some pointed questions about what I understood about why I was there, and asked me my symptoms. I replied that I had been in the process of work-up for a neuromuscular disease, possibly ALS or some sort of movement disorder and told him I had progressive weakness, fasciculations, myoclonus, spasticity, extreme fatigue, and had fallen a number of times back in August, and had been declining more quickly over the past month or so. That day and for the past few weeks I’d been having dysautonomic symptoms; i.e., nausea, faintness, hot and cold temperature dysregulation, gastric upset and constant spasm in my lower GI tract that felt like I had to poop urgently all day long. I explained that I had also had sharp muscle spasms in the instep of my left foot earlier in the day.

 When I used the proper names for my symptoms he made a rather pointed comment; “You know a lot of medical terms.” His tone sounded almost accusatory as though that threatened him in some way. I told him that there’s a whole new generation of patients out there who are highly educated and proactive, and that I was raised around science, as my father was a cell biologist, and since I tire easily I’d rather use 1 word to describe 4 or 5 as long as he and I both understand what it means. I explained that I do what I can to conserve my energy.

 Then he physically abused me under the guise of a neuro exam (started off pretty rough but on the border) testing my reflexes on some areas of the legs and then on my right arm, but when he got to the left arm he lifted his triangular rubber hammer above his head and taking full swings beat me with all his might several times quickly. When I cringed and yelled “Ouch!” he did not apologize. I have had neuro exams many times before and never in my life had I been hit this hard by any doctor; neurologist or otherwise. There was no clinical reason for that amount of force. It was obvious that he intended to intimidate me and inflict pain in such a way that it would not leave a bruise, in the pretense of doing his job.

 He had access to sensitive medical history information in my chart from a recent hospitalization at Piedmont hospital where I had been having tests and being worked up for ALS, admitted he’d read the whole thing, then lied to me that my EMG was completely clean when in fact it wasn’t, there were some findings not yet elucidated, and then proceeded to use other personal history information against me from the other hospital’s record about abuse I suffered as a child in a malicious way. He said “You had a mental health consult there, didn’t you. What did she tell you?” he again poked in a distinctly interrogative tone.

(I had merely spoken with a counselor about grief I was having about the loss of my function in the past few months). His motive was clearly to discredit the neuromuscular symptoms I’ve been having which have progressed to the level that I need help at home with daily living.  I was in shock and disbelief that a total stranger would come into my hospital room so hell-bent to attack me this way, especially a doctor who was supposed to be there to help me, and I couldn’t understand why all the vehemence. I told him briefly that the counselor had told me that she didn’t feel I had a psychiatric problem and agreed with me that it was entirely situational, and said that it was understandable that I was overwhelmed considering what was happening to my body. (I understand they cannot bill for grief so have to put something diagnostic down). Dr. M. used this in a malicious way to try to discredit my whole disease process that was currently being worked up, and these were just gross tests, just the beginning of the diagnostic process.

 His “professional opinion” (even after I had Babinski sign in both feet taken lying down and also with legs hanging over the side of the bed) was that I had “hysterical conversion disorder” and he told me that he had been “called in” (I don’t know by whom) for his “opinion” and therefore had to chart something about it.

 I told him I don’t know how he could jump to such a conclusion and that he better think long and hard about that because this could bias other doctors and result in me not getting the real treatment that could help my disease whatever it is. I said just because that was his opinion didn’t make it true and that a specialist might find the cause of my symptoms and I did not want him to poison the well with this biased opinion.

 I told him that there were well documented problems that indicated something neurologically wrong in the CNS such as Biot’s breathing, (similar to Cheynes-Stokes), and that my sleep studies were very abnormal (slow waves while awake, sleep myoclonus, etc.), and that many times I am awakened by fasciculations in my toes, and how on earth could my mind conjure up that when I was not even awake at the onset. He paused for a moment unable to counter that argument.

 It was quite clear by then he had his own agenda and did not have my best interest at heart, and what he did violates the Hippocratic Oath on a number of levels. He got defensive when I stood up for myself and told me, “Ms. Carlington, if you don’t want to discuss it there is no point continuing the conversation”. I reminded him once more that I did not want even a hint of this in my records. I told him that if he wanted to put in that he didn’t find anything that was one thing, but to enter such conjecture as he was proposing would be irresponsible. Pretty much everyone in the medical field knows what a stigma such a diagnosis holds and how damaging it can be to one’s credibility. When he shook my hand toward the end of the conversation it was a “dead fish” handshake and there was not an ounce of empathy in his demeanor.  I told him “I don’t mean to offend you” but no thanks. This was not helpful.

 He said there were no other tests he could think of to do and said that the neuromuscular specialist, Dr. G. didn’t come to the hospital, so I might as well be discharged, and said he’d refer me to him if I wanted. I said why not call in other specialists in the meantime and he asked me what specialists could be called in. I was exhausted and had been in the ER since morning with nothing to eat all day and no medication but a Valium to treat my spasticity so needless to say it didn’t occur to me to ask about a gastroenterology consult, but that shouldn’t have been incumbent upon me to initiate.

 Just a few minutes later, he sent his female resident, E.G. into my room, upon which she plopped her butt down squarely on my left foot covered by my blankets which was the one with the most weakness and dysfunction in it. The toes were pointing up, so that could have broken some bones if the muscles hadn’t been as weak as they are at the point between the foot and ankle and it flattened down. Again I yelled “Ouch!” as I do have sensation in it, so of course it hurt. She apologized as though it were an accident. There was a chair on the other side of my bed she could have sat in instead. It was not necessary to sit at the foot of my bed. This is a little known trick to see if you’re “faking it” but is considered highly unethical. This is NOT what residents are supposed to be taught as acceptable practice and places patients at risk of injury.

She made a few statements that I didn’t process because of the state of shock I was in. All I could think to do was to ask her to get Dr. H., but once she’d left the room and Dr. H. came back in I couldn’t bring myself to tell her what the resident had done because even though I felt as though we might even have been friends if we’d met under different circumstances the events of the day had happened on her watch and she hadn’t intervened, so as much as I wanted to I didn’t even know whether I could trust her 100%.

She sat in the chair opposite me, and looking back at her my eyes welled up with tears that wouldn’t fall. I was so tired, so existentially tired. I told her this made me sad, that this experience had seriously damaged my trust in Emory and in doctors, that I thought she was going to make it right, not make it worse. I told her that he was wrong and that I had nothing at all to gain, but everything to lose, that I had lost the one thing I valued most in myself all my life; my physical strength.

She told me that she believed me and saw me as an honest person of integrity, and that I should continue to pursue the source of these symptoms.

I told her that it was so unfair for him to imply that a patient was either faking or nuts just because he didn’t know the answer and I recounted the true story of a woman with chronic Lyme disease whose family wouldn’t believe her and was too poor to get treatment from the right specialists, that she’d begged for someone to help her get the treatment she needed. It never came, and the day after posting a video about her plight she walked in front of a train and committed suicide, and that I’d spoken with one of my doctors about what I wanted to be done if my suffering were to become unbearable with no relief in sight.

She responded that if I ever got to that point to come back to the ER.

“But then I’d have a record”. And anyway, why would I do that if I’d reached such a point that I wanted out? Just to be forced to endure that suffering longer? No, I thought. If I ever get to that point I will make the final decision with dignity. What I’d just endured was not dignity but humiliation and degradation. The whole point of Euthanasia is to end the suffering, not to prolong it.

Yes, that’s true,” she answered, knowing that my having a “mental health” record was what he wanted and I would never give him the satisfaction.

 I have an advocacy background (also documented in those records he used against me), so I’m able to recognize the signs of abuse and/or neglect when I encounter them, and what happened that day was highly unethical and out-and-out abusive.

When dinner finally came that night I couldn’t eat.

I had to call out to get the nurse because M had moved the call button to the countertop where I couldn’t reach it. The nurse came in and found it, shaking her head asking how it got over there.

“It was that damned neurologist”, I answered.

As I was given my discharge papers she started to hand me another Valium. I waved it away telling her I tried it earlier in the day and it didn’t help. Then she was going to hand me a prescription and I told her to keep it, as it was pointless. I would just take my Tizanidine when I got home later. I’m not sure why she was so intent on giving it to me; because she believed his take on things, or whether she thought after dealing with him and his abuse I was going to need a tranquilizer. Either way, I felt I was on plenty of medication already and didn’t need one more. Besides, there was no need to add to the stigma he was trying to make stick.

 This sadistic man is not only a danger to me physically and to my relationships with other doctors on whom my life may depend, but also a danger to other patients as well.

 When I obtained the ER record of his documentation almost a week later it was even worse than he had implied. This went way beyond rudeness or mere difference of opinion, but rose (or should I say sank) to the level of harassment and sabotage. He went way beyond the scope of his specialty and peppered it with psychiatric terms he had no business using that were the most stigmatizing mental health diagnoses he could think of, knowing that Emory doesn’t remove inaccurate, even libelous information but only puts a notation by it stating it’s incorrect. I will be utilizing their form for this, but, as his defamatory narrative will still be visible, and could bias other doctors, in perpetuity, this cannot be allowed to stand.

 In addition, he went so far as to question in the report the diagnostic process used by my other doctors who had diagnosed Sleep Myoclonus and Sarcoidosis and he implied it was all fake.

 He did nothing that would be beneficial to me as a patient, and his involvement was clearly designed to blacklist me from every doctor but those he had connections with in an attempt to manipulate me into confirming his “assessment”. He had gone too far by beating me under the guise of his “neuro exam” even though he’d admitted that he’d already formed his opinion prior to that based on the records from Piedmont hospital, and realized that I was not the easy victim he thought, so he tried to cover his behind by doing all that libelous charting as he exited.

 I have filed the various complaints that I’ve been advised to file given the types of improprieties that happened, one of them a police report with Dekalb County, GA.

 As long as he has full privileges at Emory he can tamper with my treatment, he knows where I live, and could possibly also endanger my son and his treatment whom is waiting for surgery for a D-Net tumor. That electronic records system states every appointment within the system I have scheduled, its time, and location, so I am in danger of further harassment and tampering with my treatment by him. He has shown his intentions to try to do that in that ER report.

 This rogue neurologist should have his license permanently revoked as he has clearly shown malicious intent toward a patient, (at least towards me, and maybe others), he abused his position and power differential in order to physically assault me in the process of his “work”, and followed that up by essentially attempting to blacklist me with other doctors now and in the future, something that may have life-long ramifications and fundamentally hurt or destroy healthy and beneficial doctor/patient relationships. If he would do this to me then it is reasonable to suspect he would place other patients at great risk in this way.

Who exactly is this dark man, and who sent him?

To what extent did he influence (and possibly orchestrate) the way I was treated in the ER earlier in the day?

As of yet these questions remain unanswered.

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An Angel In The Outfield

Love Is An Action Word

Upon arrival the spasticity in my legs was unbearable from being in one position on the gurney. I asked them to please loosen the straps so that I could shift onto my side.

They wheeled me into Piedmont’s ER and the female paramedic listened as I told her how long and hard the past year had been and that I feared for the future. She held my hand until the staff was ready to bring me into one of the ER rooms. I was shaking a little, not knowing what would become of me but knowing it was serious.

The waiting seemed interminable. The ER doctor was a young slim man with a long neck and dark curly hair and a rather loud voice. Nurses and various other staff came in and out of the room asking me questions, checking my legs to look at the weakness in them, pushing, pulling, the usual routine. There were so many I couldn’t keep track, but they were on high alert.

My whole body had become hyperflexive; not just my limbs anymore. When they checked reflexes with the hammer even the opposite leg or arm jumped!

When they called in the neurologist on call and she and her PA both did the same exam I could tell she had not seen anything like it before. She was fairly young with medium length brown hair parted in the middle and introduced herself as Dr. Heidi Woessner. She was easy to talk to and non-assuming and told me she’d run some tests and be back in awhile to give me some recommendations.

She returned sometime later and despite her admission that she wasn’t sure what was going on I felt as though she would do her best to find out. She and her young PA told me they were going to try to speed the process along of finding out what was wrong with me. They decided to admit me on their neuro unit there at Piedmont. I breathed a sigh of relief that finally there would be some forward movement in the process that had up until then been stuck.

The challenge was that the hospital was full and so I had to wait in the ER until a bed opened up. I waited from about 5 AM until 4 PM to get a room on the 6th floor. Medications had been documented in my chart but had not shown up yet in the system and I was getting into quite alot of pain due to all the spasticity.

They told me that my doctors at Emory wouldn’t know I’d been diverted. I had my laptop with me but felt so awful it was awhile before I felt up to plugging it in to start notifying people. I needed to tell my son and a few others first; those who would be most able to help and those in the autoimmune community who cared how I was doing. I knew I needed to get someone to go by the house and take care of my pets and possibly bring me some things like clean underwear.

The man who does home repairs on my house had told me once if I ever needed anything to call him but as it turned out he could do nothing when the time came, as his own father was in the same shape.

My son had to take a bus up from Athens, GA. to Atlanta one day (similar to Greyhound because there is no linkage with the public transit system) and he spent the last $20.00 he had. None of his girlfriends’ family would bring him in their car. My son suffers from a disability himself. He cannot drive now because of a benign brain tumor called a D-Net made of excess neural tissue that presses on areas of the brain causing seizures on a daily basis; mostly Complex Partial but he has some Grand Mal seizures too. 

His phone is often cut off for non-payment and I have my suspicions that he is just too generous with his money, although her income is higher than his. He always seems to be the one with the short end of the stick in that relationship. I hate to see him in that situation but can only wait for it to become intolerable enough for him to draw his own conclusion however long it takes.

They did one whopping MRI of the brain and spinal cord, and a spinal tap, numerous blood tests, etc.

The day of the MRI I suddenly had to pee not knowing it was going to take nearly 2 hours because they were actually doing 3 or 4 scans at once. They got a bedpan and lifted me up off the table and somehow that position with their hands on my spine caused me to jerk spastically backwards. It was kind of comical, and I couldn’t help but laugh saying one day this would make quite a story to tell my grandchildren. The whole thing was rather funny and I had to try hard to keep from laughing while I was in the machine, as they wouldn’t pull my pants back up after my using the bedpan for fear I might have to pee again. They just put a pad under me and covered me with a blanket.

I joked that I hoped I would not break their expensive machine, as the thing seemed to be overheating with the length of time I was in there. I think except for one area the pictures for the most part came out pretty clear.

I found that I got rather tickled after that at random times, even when I felt irritated, and did not know why. It was as if something was broken in my brain that I couldn’t quite explain and my emotions were all over the place. I alternated with periods of crying, but mostly laughing. It might be psuedobulbar affect, but I’m not entirely sure.

Then there was the time the aid was supposed to help me take a sponge bath at the sink and left me there and never came back. I tried to figure out a way to wash my feet, as I was having trouble reaching down. I finally just grabbed hold of my legs and lifted them into the sink. When the nurse came in she looked at me as if I were a naughty child, looking at me with a mixture of fear and disdain. “What are you doing!” she admonished as though I’d committed some awful faux pas . “I’m washing my feet”, I replied matter-of-factly. “I couldn’t reach them on the floor so I had to just be creative” I said, laughing. Something had to be done to break the tension around there, as you could have cut it with a knife.

“That’s not creative!” she said shooting me that look of disapproval again. 

“Yes it is” I replied. “Come on, don’t you ever have days when you’re in a silly mood and joke around with your friends? You have to have fun sometimes”. The nurse remained stone-faced. “No”, she responded, “I don’t. You’re not right” she said shaking her head gravely. “You’re just not right.”

There was a blond-haired physical therapist that for all the world reminded me of Stewart Smalley, the guy on Saturday Night Live who was in that skit where he was always looking in the mirror saying “I’m smart enough, I’m good enough, and doggoneit people like me!” He was a bit irritating so I sent him away as I was never really sure what he wanted me to do, but whatever it was it seemed he was looking for a bone of contention and that in itself was tiring.

Dr. Woessner, guardian angel that she was had left for the Thanksgiving holiday, and her colleague took over the following week, so despite her best intentions things went downhill from that point on. Luckily her order for Morphine and Ativan to get me through the EMG was honored, although the first guy who was scheduled to do it kept unscheduling it and reminding each day’s attending that I’d unscheduled it the first time, as if to make some oppositional statement.

I was relieved when it finally was set that it was the other guy (who was much kinder and more mature). If you’re going to have needles jabbed into your muscles and your nerves shocked it’s probably a good idea that the one doing it isn’t holding a grudge, LOL. This test is a bit too reminiscent of a Cuban prison as it is.

I remember that day the young tech who was supposed to be there to offer comfort sat in the chair across the room staring uncomfortably at the floor. He’d worked there 23 years although I don’t know how someone stands a job like that witnessing that which is done to patients day in and day out for that length of time without becoming either hardened or turning into a puddle of jello.

I called over to him “Hey dude! Please! Come on over here and hold my hand,” to which he sheepishly complied. At the worst of it I let out a rather guttural yelp followed by a few rapid breaths (I have never been able to scream normally), and I think his hand sweated worse than mine did. Oddly I found that comforting, as it let me know that he still had empathy even after working in a place like that all those years.

The man administering the test only did a few areas on the left side of the body and seemed a little sloppy about it. Although maybe at least in part he intended to spare me, he failed to document the rate, so I don’t know if the test was sufficient enough to be valid. Since I am unable to point my toes he had to do it for me. He quickly ruled out a bunch of stuff and it seemed it was over in about 20 minutes, tops. He saw something but said he didn’t know what it was (story of my life).

My vital signs were all over the map and I found that there was one particular male nurse who about 3 days prior to my discharge seemed to want to manipulate the readings until it was somewhat more normal before having an aid record it. When I realized what he was doing I called him on it and he stopped. It was strange to say the least!

On the day of my discharge the attending told me that Administration had been on his back for a week to discharge me because I needed a specialist in movement disorders and they felt ill-equipped to provide more than supportive care. He said I really needed to go somewhere like the Mayo Clinic, John’s Hopkins, etc. I don’t disagree, but I was by no means well enough to leave the hospital and he told me that they couldn’t do a direct transfer unless I were going to die within 72 hours. He told me he hadn’t had any luck with that for the past 13 years.

The conundrum about testing he said was that at Piedmont hospital if you have fasciculations in your tongue they give the ALS diagnosis hands down even without the tests but if they are in another body part (such as my foot as it was witnessed by the man who did my EMG before he even stuck the first needle in) they brush that aside, as he says they are not a hospital qualified really to diagnose such things. I don’t want to hate my body but now I do as it seems not to be cooperating in getting the necessary information so I can do something about these symptoms.

Since it was a Saturday and I had no way to get orders written by my Emory doctors until Monday I asked him if he’d write the Saline fluid order for home healthcare to start an IV with the next day. He said he would since he acknowledged they’d determined my dysautonomia to be chronic now and in need of continuous infusion. At least it was keeping it somewhat stable although it didn’t cure it.

When the time came and my paperwork had been processed he went back on his word and told the nurses a different story.  People were rushing in and out of the room and just signing a release to get my records sent to my outpatient doctors was difficult. I had to call the social worker 3 times to prevent the nurse assigned that shift, Carolina from dropping the paper on the table and bolting from the room. There was some strange energy going on to say the least! I stared her in the eye and told her I knew and she knew this was wrong and that this should have been done the proper way so that I’d be safe once I got home over the remainder of the weekend. She averted her eyes, knowing in her heart  I was right. They intended to send me back to be Emory’s problem. Little did I know that Emory  had plans of their own to deflect responsibility. I was only just beginning to understand the political games big healthcare systems play using patients as pawns.

Transportation was on their way to come with stretcher in tow. On the dry erase board on the wall where all the days’ schedule was posted I scrawled a message to Dr. Woessner which read “Thank you, Dr. Woessner, my Angel in the Outfield. :-)” If I could I would have her as my neurologist on the outside, but she only works inpatient. I have never met a neurologist as kind and caring and doubt I ever will again. The attending who discharged me made a comment once that I held her in high regard (as if I shouldn’t), but then why wouldn’t I? She’d always treated me with the utmost respect, compassion, and dignity.

Slow Boat To Nowhere; Locked out

Padlocked

Even during the first sleep study I noticed alot of jerking in my limbs and sometimes my trunk as I started to drift off to sleep. This increased over time and became so severe that it often went on for 6-7 hours. In sheer exhaustion I finally fell asleep during the day in order to sleep at all only once it had worn itself out around 7 AM. 

During the summer I was at my whit’s end as this was interrupting my sleep so badly that it was beginning to really irritate me.

The Biot’s Breathing is more a matter of low respiratory drive; not associated with air hunger generally so I usually don’t notice that I’m under-breathing. Trying to purposely breathe continuously like most people do completely exhausts me, so I don’t do that anymore.

It was the jerking at that point that was the most bothersome to me. I spoke to Dr. Hoff who was still in wait and see mode, but things started to become more urgent for me, as I didn’t know how much longer I could go on 2-4 hours of sleep a night. I knew that this jerking would have to be brought under control if I were ever to have any peace and quality of life.

Clearly some neurologist was going to have to handle this since neither Dr. Hoff nor Dr. Baird knew what to do to make it stop. I haven’t had much luck with neurologists so I figured that I needed to choose wisely or it would just end up going nowhere and I’d be stuck with the problem. Most neurologists I’d seen at various times of my life knew something was wrong but couldn’t put their finger on it, nor did they follow the thread for long before dropping it and shrugging their shoulders, leaving me to suffer in silence with a variety of presenting problems.

In August 2015 I began falling for little or no reason, about 4 times in just 1 week. My legs would just fail and I’d fall on my hands and knees, teetering on my big toe bent back under me. My left leg had started getting stiff and I had fasciculations in the foot and toes.

When I told Dr. Hoff about it he had me push up my left leg against his hand pushing down and my leg started jerking so badly I almost injured myself. I later found out this was hypereflexia, an upper motor neuron sign. He also documented weakness in that leg.

That day I found by the time I was ready to go downstairs to wait for my transportation home my muscles felt so tired and overworked just from a simple exam of muscle testing I could hardly walk that far. Every muscle in my body was spent, literally and I felt systemically ill. I knew something was seriously wrong.

Dr. Hoff was now sure I needed to see a neurologist because now although he had his suspicions of what was going on in my body be knew it would require an expert to nail down what was wrong, but he did not know who to recommend. 

In the meantime he scheduled another sleep study including a few more leads that weren’t included before in previous ones, some to measure activity in my limbs, and he was going to also have me stay for a daytime one to evaluate me for narcolepsy. He explained that there were so many confounding variables that it might be hard to tell if it was narcolepsy that was hitting me unexpectedly or just sheer sleep deprivation because of all the jerking keeping me from falling asleep at night (I had been having some episodes at home and even out shopping where I literally fell asleep on my feet, in front of the computer while typing, and during several other activities). If I was able to get 6 hours of sleep that night then we might be able to know which of these it was, but if not the daytime sleep study wouldn’t really answer the question. Hopefully this would provide some useful information to the neurologist I was going to see next.

Unfortunately the combination of severe jerking and the various techs coming in to adjust the equipment kept me from getting the required 6 hours of sleep, so the daytime study was called off. The nighttime study did, however document the jerking on video which was quite overt and frequent. The leads were non-specific although the did document the bursts of activity. Not being a true EMG that was the best that could be done to document what was going on in my muscles in a sleep setting.

Dr. Marie Trotti and Dr. Rye both worked in the Sleep Center, so I read up on both of them, and since Dr. Hoff was considering that I might have a movement disorder I settled on Dr. Trotti since she had a background in movement disorders.

I scheduled an appointment with Dr. Trotti and had to wait about 2-3 months to get in. This seemed like the longest several months of my life but I stuck it out, as I really believed she could help me if I could hang in there long enough. 

The appointment time came and went and try as I might to stay on top of my medical transportation they failed to show up and I had to wait yet another 2 months to see her. I was literally in tears when I realized there was no way to get an urgent appointment any earlier. Emory was just too backlogged with patients. On top of the jerking keeping me from getting quality sleep, and the sudden sleep attacks at odd times, I was rapidly losing my ability to walk. This was very scary as I was becoming very disabled very quickly and it was becoming difficult to do normal activities around the house. 

The only consolation was that once I finally was an established patient of Dr. Trotti’s maybe she could do all the necessary tests to solve this thing and maybe there would be some treatment that could help me. One could only hope. I felt that maybe finally my plight would be over once I got in to see her, but that was not to be. 

Instead of taking on this challenge she explained that she was “this sleep person” her main interest currently being in Idiopathic Hypersomnia, and I found that her zest for new and unique cases seemed to have given way to the day to day narrow focus of routine and maybe less interesting ones. This was not the person I’d read about on the internet who looked at sleep as just a part of the big picture. She had become someone different now, content to look at the sleep aspect only. It was a shame because while there is a need for people in that sub-specialty I felt she could have aimed higher and maybe gone on to find cures for some really major and complex diseases if she’d wanted to. She definitely had the capacity. I liked her but was disappointed and not looking forward to being thrown back to some other neurologist to finish a job long overdue.

She documented hypereflexia and weakness in my left arm (so now between her record and the pulmonologist’s record of same in left leg  I now had some idea of what was really going on and I could tell so did she, yet she was declining to take me on as a permanent patient and was going to do two tests (a cervical spine MRI and two blood tests to rule out Myasthenia Gravis) both things she thought least likely to be the problem.

To her credit; she did take the time to look at the films of my sleep study and give me the diagnosis of Sleep Myoclonus, and prescribed Keppra, an anti-convulsive. 

She looked over my recent blood pressure readings at various Emory appointments and questioned why my GP wasn’t treating the intermittent high readings. Some were high altogether and some just one number (systolic or diastolic high). I told her he probably just figured it was due to the underlying condition and once she figured it out maybe it would be treated by treating the cause.

The two or 3 tests she ran was where she got off the bus so to speak, leaving a referral to Emory’s General Neurology Dept. (which was going to take a minimum of 2 months to get into. By this time I didn’t have two months to wait.

I called back and asked that the referral be sent to the Neuromuscular clinic directly since that was where General neurology would end up referring me anyway, and I knew that would take at least 4 months if I took the added step going to General neurology first. She did do that much and then my GP also sent a referral to Neuromuscular, but the two referrals sat there for about 2 weeks with no reply and I was not put on the schedule.

The man who runs that clinic is Dr. Glass, one of the top ALS specialists in the country. I read up on him and I thought if anyone had a chance of helping me it would be him. I figured why not be evaluated by the best and know for sure whether this was what I had, (or whether to head in another direction).

My GP tried finding out what the hold-up was and was told he was out of town and a general scheduler told me that he was “really particular” and had to review a patients’ chart and then give only his own nurse permission to put a new patient on his schedule.

She told me his nurse, Holly Doe would be calling me. I waited patiently but no call came. I continued to get more disabled and had increasing spasticity for which I had to be prescribed Tizanidine. That helped until it wore off and I had to take it again, but at first I could only tolerate a half dose because full dose made my neck and vocal cords too weak and it ached when I spoke.

I had to ramp up from a half dose, to 3/4 dose as the spasticity increased, and then to a full dose.

As we awaited word from Dr. Glass’s clinic I started having some episodes of choking on saliva and phlegm when lying down or sleeping. I urged my GP at Emory to please be more assertive and ask Dr. Glass to take the referral and also to get Dr. Trotti the last neurologist on record to step up and do something to help me. She couldn’t in all conscience just do nothing when she had the skills and ability to help me.

There was going to be awhile before another neurologist would pick up my case and since she didn’t finish the testing necessary to be accepted into Dr. Glass’s clinic, when I then followed up and my GP followed up shortly thereafter, I was then denied entry.

This was mightily unfair and cost me precious time which I considered may in the end cost me my life, and it gets worse from there.

It was then I realized I really should be in the hospital, as I couldn’t even tolerate being in an upright position long enough to go back and forth to the doctor with non-emergency transportation. Often it took 3-4 hours sitting upright in my wheelchair to be picked up to go home and by that time I was in excruciating pain due to the spasticity in my butt, legs, hips, and upper body because of gravity on the muscles.

Cold weather on my arms triggered myoclonus really badly even during waking hours in my shoulders and it was unbearable. I really needed to be in bed, and since my wheelchair is a hoveround it places all the weight solidly on my core and there’s no way to evenly distribute my weight so that my muscles can be properly supported. I need one with a head and neckrest and the ability to recline in order to make such trips out.

No matter how much I tried doing the usual things I was getting more and more weak and exhausted. Lifting pots in the kitchen to cook was exhausting and sometimes just lifting glasses was taxing so I had to devise creative ways to carry things, put them on my lap, the small footrest on my wheelchair, and finally had to use mostly Styrofoam cups.

Finally I found it nearly impossible to bathe any longer. I could no longer lift my legs high enough to step in to stand and take a shower and could tell that taking a regular bath was out of the question because my arms were no longer strong enough to pull me up and out.

The last bath I was able to take at home was to sit on the edge of the tub and splash and wipe soap and water on me with a washcloth. I didn’t have the strength to do it for long. 

I asked at that point since my GP was talking to the last neurologist whether she could do a direct admission since the dysautonomia was getting really serious and my disease was progressing at a fast rate. Something changed at that point and the GP I’d seen and trusted for 12 years suddenly started becoming very evasive. He wouldn’t answer my question and his responses became guarded as though he was being coached what to say. It was very unsettling. I must have asked that question 6 times without getting a straight answer.

He never used to keep things from me before but it seemed as though something had definitely changed. We’d had a good working relationship prior to that.

Since he was my primary care physician I asked him to be assertive with her so that I wouldn’t be left without a neurologist at this crucial time. He seemed increasingly cagey as if we were no longer a team and he’d chosen other alliances, running counter to my best interest. As ill as I am that was the last thing in the world I needed.

He would only say “If you feel unsafe at home you should go to the ER. Call 911 if necessary.” I wondered why he was laying this solely at my feet and wasn’t advising me as my doctor or trying to help facilitate. Something just didn’t feel right.

He never did tell me (until much later on the phone) if Dr. Trotti had admitting privileges at Emory neuro unit, so one day I decided to Google it, and it appeared she in fact did have them! (Later Dr. Baird told me that Emory’s idiosyncratic system says everyone has admitting privileges when in fact they don’t. I don’t know why this is but nobody would automatically know this and it’s very misleading, causing lots of unnecessary upset to patients). All this time he’d let me go on thinking that she was just choosing not to help when in fact she couldn’t. To this day I still don’t understand why he just didn’t explain this in the first place.

 Of course it would have been prudent for some doctor to have admitted me for tests and observation at Emory and fast-tracked the classical ALS evaluation process while they stabilized the dysautonomia. It seemed like the logical and safe thing to do.

I didn’t feel good about the deceptiveness and that I was not privy to all that was going on since afterall this is my body and I had a right to be a full partner in the process.

The bits and pieces of explanations I was given were not adding up and I was left to read between the lines, with a feeling of uneasiness.

Finally there was a new neurologist scheduled for that coming Friday, and then an EMG scheduled early in December. I was going to try to hang in there until I could get into the General neurology clinic, but try as I might that was not to be.

Each day the dysautonomia got worse and finally around 4 AM Wednesday morning I nearly fainted several times while lying flat on my back, having hot and cold spells, and sudden urge to defecate.

I knew at this point there was no way this was going to be possible on an outpatient basis, so finally called 911. The ambulance was on the way to Emory when base told the driver to divert because Emory was overcrowded.

The driver asked which other hospital I had a preference for and I told him Piedmont since my father who had worked as a cell biologist at Emory chose Piedmont in the later years of his life. My father never really took good care of me but never failed to procure the best care for himself.

 

The Canary in a Coalmine; A Hint at Something Deeper

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This odyssey all started in January 2015 when I unexpectedly found myself on a journey through hell on earth with a mysterious, severe and progressive disease, for the second time. During a very long and hard diagnostic process I have had to learn things I’d never thought I’d have to learn, seen things that have made me doubt humanity, and have endured atrocities no living thing; human or animal, should be expected to endure, and have done it mostly alone.

Some background; 12 years ago, in the summer of 2003 I became acutely ill and almost died of another mysterious disease which included 30 or more symptoms and about every 5 days ravaged a new system in my body. Later after many visits to the ER, and after seeing numerous doctors I was diagnosed with Sarcoidosis, a multi-system disease which has a lot on common with Lupus. The first symptom was an excessively dry mouth and then the rapid loss of bone in my upper jaw, creating blackened gums in both jaws and a big and widening gap between my teeth within just a period of 5 days.  I went to a doctor who after looking me over carefully determined that I had Staph or Strep, gave me Zithromycin and sent me on my way. It seemed to help at first but I noticed each night my symptoms still worsened and after the full round was finished I relapsed. By that time I’m sure it had infected the CNS because I had grown confused and was having a lot of trouble doing the simplest things, and I couldn’t comprehend the meaning of what others were saying to me on the phone. Mobility, writing, and even speech were compromised. It was posited by a home healthcare nurse who saw me about 5 weeks after onset that I may have had some strokes because I had facial palsy and significant change in mental status.

I’d been losing 6 Lbs. a week, had projectile acid reflux so severe that it spewed out onto my bedsheets each time I fell asleep, and this progressed to severe shortness of breath, cardiac arrhythmias, near syncope, cold body temperature alternating with low-grade fevers, facial palsy, pain in all my muscles, and much more. The drugs that were FDA approved for Sarcoidosis I found from my reading, were adding insult to injury and the risk or organ damage, fatal infection and avascular necrosis were things I wanted to avoid if I could. My current doctors didn’t know what else to treat it with so I went online to see if I could find a better option and finally found an off label protocol which used pulsed antibiotics and Benicar (an Angiotensin Receptor Blocker used to treat high blood pressure). It was new, safer, and I found, more effective than either steroids, biologics, or anti-cancer drugs such as Methotrexate often given to patients with that disease. I asked my new GP, Dr. B. at Emory to prescribe it and at first he was hesitant, but one day I came into his office so short of breath I was desperate, and he agreed to write the description. My improvement was dramatic, with significant reduction of pain and respiratory distress within just 2 weeks, so I knew I had made the right treatment decision.

After about 2 years I felt maybe I was ready to go back to school seeking a degree in psychology. It was not long afterwards that the Medicare Part D legislation created under former President George W. Bush forced all those dually eligible on Medicare/Medicaid currently receiving their prescriptions through Medicaid to be switched to the private contractor for all prescription coverage. Little did I know that now no off-label protocols would be covered by my insurer.  I tried to appeal with my doctor’s help but to no avail, and buying Benicar in cash was not an option, as 1 month’s supply would cost me more than my monthly income.

No sufficient prescription aid programs existed for this drug at the higher dosage indicated by the protocol, so sadly, I had to go off of it. For 10 years I maintained by reducing my exertion and eating a macrobiotic diet consisting mostly of vegetables and avoiding Vitamin D (because it’s the Vitamin D Receptor that is dysregulated and therefore the target in Sarcoidosis and most of the other chronic serious diseases). I thought I was succeeding at keeping the disease under control but I had no idea what was about to happen.

I walked into my GPs office initially because I felt more fatigued than was my usual baseline and thought that maybe if I asked for a physical therapy referral this might build up my stamina and that I could take on more during the day. Unfortunately not only did this not help, but actually seemed to exacerbate my fatigue and sore muscles that seemed to get tired easily. I had trigger points in my back and neck that were inflamed. Only massage seemed to help but Medicare won’t cover much of that even though it will cover some if given by a physical therapist.

Since I had clusters of episodes every few months of falling asleep during the day Dr. B. suggested I have a sleep study, which at the time I couldn’t imagine had any connection since it wasn’t constant but I agreed to give it a try to rule out those types of disorders, if nothing else.

I called Emory’s Sleep Medicine Department which only had two specialists in it and was scheduled with Dr. H. When I described how I’d been feeling he said he had a hunch that my case might be different from the majority of patients he sees most of whom have obstructive sleep apnea. We might be dealing with a more rare variety, he said. The sleep study was scheduled and that night I noticed lots of jerking when falling asleep but was unaware of anything else. I just chalked it up to a rough night in an unfamiliar place with all the wires probably interrupting my sleep. I totally expected the test to be negative and that soon my worst days would be behind me and that better health and a fuller, more functional life was on its way.

My appointment with Dr. H. was still a month or so away, but I received a call asking me to come into the sleep lab for another sleep study for a CPAP Titration. I nearly thought they had the wrong patient because I didn’t snore and had no other indications I had sleep apnea. They assured me that I in fact did stop breathing during the night and said this could be a problem if not taken care of. It was only a week later, so I figured whatever type of sleep disorder I had that it must be important to do something about. The person who scheduled it wasn’t entirely sure of the details of my condition, but said she’d send me a copy of the report.

I went in and had the same technician assigned to me as the first time and although I didn’t really like the idea I figured “how hard could this be wearing a mask while sleeping”. I had no idea! After trying several masks I settled for one that at least didn’t blow out my eardrums. The nasal masks were intolerable right away. This one was like a bridal with all sorts of straps but it covered my face and didn’t put such pressure directly up my nose. Even though it was better than the nasal masks the straps in the back hurt my neck and caused my muscles to be miserable.

I tossed and turned trying to get comfortable but no position really worked. Then as I fell asleep there was a huge strong vacuum which seemed to reverse and actually sucked the air out of my longs. It reminded me of those commercials about Space Bags in which the vacuum cleaner sucked all the air out of a plastic bag and the bag crumpled in on itself. In addition I had bad smelling air inside my lungs that came back up.

The tech came in around 5 AM looking concerned and asked if I wanted to end it a little early and I said that I did and told her about how it seemed to do on me the opposite of what it was supposed to do. She looked almost as though she might cry and said she was so sorry, and took off the equipment as fast as she could, stating that she really hoped there would be something the doctor could do to help me.  I knew that there was more to this than met the eye but hadn’t received the report yet so I still didn’t know the half of it.

The next several weeks were a hellish roller-coaster ride each night with cliff-hanging stoppages in my breathing that now I was aware of and at times my heart actually paused beating for a few seconds. Then came the shortness of breath during the day too.

I saw Dr. H. in the office and he told me “ This isn’t the type of sleep study we like to see” and said “I haven’t been able to find another case like this in the literature since the early 1900s when some patient had been documented as having Tuberculosis of the brain.” He said I desaturated even while awake watching TV during the sleep study and that he was concerned about my hypoxic burden”.

A pattern similar to Cheynes-Stokes, Biot’s breathing (or Biot’s Respiration as it’s sometimes referred to) is so rarely seen that he gave some sort of presentation on it to other doctors. He kept saying “This is not good. This is not good.” He drew a picture for me of the brainstem and said the problem causing this was most likely either in the Pons or Medulla. He showed me a copy of the report and the chart from the first sleep study with flat lines interspersed with about 3 smaller breaths in-between.

The CPAP titration looked pretty much like a flat line all night. He explained that not only did the ventilation not help, but actually made it worse. At the time it almost didn’t feel real to me. I sort of made light of it and reassured him that somewhere there must be a silver lining in all of this. If there was one he couldn’t see it. He told me this would be challenging to treat.

I told him “Well, I’m probably the most damned determined woman you’re ever going to meet.” Although what I said was true, little did I know that this was just the first hurdle I would encounter. There would be more obstacles to overcome, some of them steel walls 10 feet thick.

He ordered a brainstem MRI which didn’t show anything, and not knowing much about the neurological ins and outs of this he wasn’t sure what to do at that point. Neither was I. This was new territory.

He and his nurse started working on having Medicare certify me for oxygen since I was unable to tolerate any pressure. It took quite awhile to get through the process of getting the oxygen approved and I was agonizingly short of breath with little and sometimes no exertion, especially when going out. First I had to have a “6 minute walk test” to see if I could qualify for portable oxygen which would allow me to get out more.

That didn’t work because the tech kept telling me to breath (which to me felt like hyperventilation since I don’t breathe regularly the way others do, and that raised my oxygen saturation above 88 % within that 6 minute walk back and forth down the hall. Next we had to get a nighttime oximetry test done at home for a nighttime Oxygen. That took several months alone, but it turned out I qualified. It went down as low as 80% for 5 minutes or more during the night. I qualified and was approved for an oxygen concentrator at home.

The first time I put on the oxygen I felt so much more alert, and much to my surprise my nail beds which I’d assumed were normal being a lavender color turned distinctly pink. I had no idea how long my breathing pattern had gone on before I’d stumbled upon it, but I felt more clearheaded than I had in years.

Though the oxygen provided relief for my breathing at night and eventually stabilized my shortness of breath during the day, the cause; the underlying condition remained elusive. I hoped nothing further would develop and remained hopeful that it was as bad as things were going to get, and I went about my life. For the time being Dr. H. and I could watch and wait, cautiously optimistic.  In the meantime this remained our little project, more of a puzzle to figure out in the abstract, and although the Biot’s breathing indicated that a neurologist be called in, the situation at the time appeared pretty stable, so neither of us was particularly alarmed.

Little did either of us know, trouble was brewing right around the corner.