Well, not quite!
Meeting, falling in love with, and marrying Garrett definitely began a new chapter, if not a whole new book, in my life. He is my knight in shining armor. But life is not a fairy tale.
We met January 5th or 6th of ’94, had our first date on March 5th, were married May 6, 1995. We were blessed to conceive right away and Ben was born in February of the following year. I worked only in the early weeks of the pregnancy. The morning sickness lasted most of the way through, and it was during that first pregnancy that very profound fatigue became a new and permanent part of my life. Compounding that, I got a nasty upper respiratory infection that just about convinced the doctor I had pneumonia, (chest x-ray proved it not to be the case) and with the infection it was nearly impossible for me to sleep in the later months between the bulk of baby and the diminished lung capacity and the constant coughing. It was a miserable 9 months. The day I found out I was pregnant, I went into such a state of shock that I could not find my way to a patient’s house, who had been on my weekly schedule of rounds for several weeks at that point. I stopped twice to call and say “I really am on my way, but I seem to keep getting lost”. When I finally got there, I shared my news, and we switched roles. She sat me down, got me crackers and juice, and took care of me until the shock wore off a little bit. As it was I still handed off her visit that day to another nurse to handle and rescheduled the rest of the day’s appointments. Garrett took it much more calmly than I did.
Benjamin was born, and we moved into our present home 2 weeks later, (yes, we packed and moved with a newborn and with me only 2 weeks post c-section surgery, with a lot of help from the in-laws). And then Garrett lost his job one week after that. I will never forget his face that day, but we knew we’d make it somehow. I went back to work within 8 weeks, working the midnight to 8 a.m. shift at a nursing home so we wouldn’t have to put the baby with a sitter, while Garrett found a job selling cars from 1:30 to 8:30. I would come home around 8:30 am, sleep for 5 hours, then he left for his job, so I had to wake up and care for the baby, but I was so exhausted I would put him in his wind-up swing, and snooze in 30-minute intervals for another hour to maybe hour and a half (blessedly he was a contented baby and they still sleep a lot when they are that new), and that was how we got by until Garrett found work with normal hours and pay sufficient for us to live on. We didn’t have insurance through his work yet, when the doctor determined Ben had a heart murmur and sent us to a pediatric cardiologist. That went on for a few more visits, and tests, and resulted in our owing a pretty big bill, which we arranged to make payments on.
I left the night job and babysat from home, and after Ben was about a year and a half old, I took another full-time job as office nurse for the head physician in a busy G. I. specialty practice, my fatigue never having improved. I’d had a sleep study before the wedding, and sleep apnea was diagnosed. I opted for surgery instead of the c-pap, and had scheduled it for the summer after the wedding, but had cancelled it when I found out I was pregnant.
Work in a medical practice is extremely hectic and stressful. The atmosphere at this one was particularly bad. Doctors double-booked their slots, patients always waited and were understandably upset by the time they were ushered into an exam room. One med tech employee was dealing with a bad marriage and serious depression, and didn’t have insurance to see a therapist. We were all very concerned about her. One of the doctors was married to a clinical psychologist, so someone approached that doc to see if his wife might agree to see the tech as a professional courtesy. The psychologist was not willing to do so. A few days later, the tech dropped her two kids at daycare, but never picked them up. She hung herself from her upstairs balcony. She was 24 years old. Afterward the doctor’s wife who refused to see the tech availed herself for “grief counseling” at no charge for anyone who needed it.
I hadn’t been there but maybe 2-3 weeks, still learning the ropes in my own position when my doctor, and the nurse of another doctor in the practice (whom I’d never worked with or met), both went on vacation. They do it that way, so there is always someone there who is familiar with a particular doctor’s cases. This left me to a great disadvantage, because I didn’t know anything about the doctor, his routines, his patients, his personal preferences, or the procedures that he specialized in. I met with him that Friday evening before, and he rattled off faster than I could even take notes, everything that was expected of me the coming week. These were detailed specifics: the key to this cabinet is located here; use “this” form for “that” procedure, the pink copy goes to the patient, the white on the chart, the yellow goes in a file that my nurse keeps in her office…these are the meds I need you to pull when I do such and such, and on and on…! Finally I just stopped trying to write it all down, and sat there staring at him in disbelief. The expectations were outside the realm of reality. I had expressed my discomfort with the arrangement to all involved, but it was to no avail. Now, I know nurses who wouldn’t have been fazed. They would have sat there knowing how ridiculously unreasonable this whole thing was, showed up on Monday and however much time it took her to find things, complete things, and document things, she would take that time, and let the doctor stew in his own juices. That nurse is my hero. It was my goal to someday be like that. But at that particular juncture, that kind of pressure was not worth subjecting myself to. When he finally he paused, and he said , “are you getting all of this?” I said, “oh, I’m getting it!” When it was clear that I was “dismissed” I got up, walked down to the office manager, and tendered my resignation. I’ve never left a job without mulling it over and giving adequate notice, but for some reason that day, I didn’t feel the need. I sort of surprised my own self! That office was a heart attack in the making. It turned out to be just as well, since I learned a couple of days later I was pregnant with Isaac. That did help explain the unusual rapidity with which I reached my “guff-taking” threshold that day!
After that job I went back to home health, private contracting, and worked until the week of my due date. After Isaac was born, I stayed home about 9 weeks, and then went back to RN work putting in 35 hours a week on an Outpatient Surgical Unit of the hospital 3 blocks from our home. Our babysitter lived right behind us, so it was all nice and close. Isaac was about 4 months old when I finally had the sleep apnea surgery.
In my case the procedure was pretty extensive, removing the uvula, the soft palate and part of the bony palate, and I also required a septoplasty for deviated septum. There was more I really needed, but would have involved a plastic surgeon because it would mean altering the bony structure of the skull itself, which is “plastic surgery” territory, and insurance may or may not have covered it. I decided to skip the additional consult, and coordination of surgeons and likely out-of-pocket expense which it would have required for that third procedure, and convinced my E.N.T. surgeon to combine the uvulopharyngealpalitoplasty (U3P for short) and the septoplasty into one extended procedure to save money and recovery time. He did not want to, but I told him “take it or leave it”. He said no patient of his has ever tolerated either of the two procedures individually, as well as I tolerated both of them together. Yup. No sucking ice cream through a straw for a week for this chick. Who has the time for that?
I will never forget the dear lady from our church (who had also attended the church I grew up in) coming to the house to take care of the kids and feed the family the day after my surgery. She showed up at my door with her apron already on and casseroles in hand. I know that my Mom would have been here if she could have, and so did she, so she filled in for her. What a blessing!
Within a couple more months, Isaac started to cry a lot, and to eat poorly. His doctor found he was having recurrent ear infections. They must have been very painful for him because our smiley baby became cranky and miserable, and he also seemed to stop learning new words. His pediatrician did not want to refer him for ear tube placement. We did the procedure on babies his age all the time in the Outpatient unit I worked on and I was not concerned with the minimal risks, so I finally switched pediatricians, and we got the procedure scheduled and done. (He was right as rain after that and I only wished I had followed my own intuition and fired his doctor earlier). One of hubby’s favorite “Isaac stories” is about how as soon as he was woozy on the pre-op sedative, he started slurring his words and flirting with the nurses. He was only about 10 months old and he shouted out, “heeey you’re cute!”, then nearly toppled off the gurney.
We had barely more than jumped that hurdle, when another development issue for Ben popped up, leading to yet another specialist consult, more tests and bills.
At this point in my narrative, I have not touched upon the subject of in-law issues, which started with the planning of the wedding, and only have been resolved in the past few years.
His disclaimer while planning for his parents and me to meet for the first time, ought probably to have been a red flag as to what we were in for.
Garrett: “I told my parents about you and so I’ve been instructed to inform you we are having dinner with them this Saturday night at Italian Oven. Now, my mom can be, um, well, I’m not sure how you’re going to take her, she can be a little “over-bearing”. Mine and my Dad’s general policy is just nod your head and smile a lot”.
I had put a lot of work into my boundary issues by then, but it does little good to have a fence if it doesn’t go all the way around. It was one thing when it had to do with the wedding, but when, once we were married, lines continued being crossed, the issue between he and his parents, became extremely divisive between him and me. These were not small, inconsequential issues. Is it ever appropriate for a mother to say to her son; “When will you grow a backbone and learn to stand up to that woman?” (This particular example occurred several years into the marriage, when he informed her that for the first time, we would not be spending Thanksgiving at their house). This dynamic pitted Garrett and myself at odds with one another and left him often feeling like he was expected to appease them at the expense of his own family. It all added terribly to the strain we were under, and cast a pall over every special occasion for a lot of years.
At the same time, Garrett’s folks seemed to adopt a young couple at church with two sons the same age as ours, and spent a great deal of time doing things with them, calling the couple their “son and daughter”, going out to dinner and other outings with them, babysitting their boys quite a bit, and even introducing them to others as their “grandsons”. It was all too reminiscent of crazyville for me to even try to wrap my head around, and for Garrett, it was painful to see these strangers have the relationship with his parents that he wished our family could have, if they would only respect the boundaries, and him as an adult with a wife and then kids of his own to consider. Of course, he was the only one who could establish those boundaries and for what ever reason, he was too intimidated to do so.
Garrett told me this about himself early on in our relationship; “When I have something important to say, I’ll say it. Most people talk and talk and talk, and never say anything at all worth hearing”. Another thing I learned about him pretty quickly: Don’t interrupt. He will shut down. He will talk if someone is willing to listen, but he won’t talk over you, and though he doesn’t feel the need to have the last word, his failure to return a verbal volley should never be construed as his having concurred to your position or point of view.
I think his biggest bone of contention in the relationship with his folks is that they raised him and yet they don’t know these things about him. Communication within the family being what it was, all efforts at “fixing things” between us, seemed futile, and only to make matters worse.
Having been married to Garrett a good long while, now, I know that I have at times felt the pressure to make conversation in an effort to cover for what may seem like an aloof silence on his part. When one partner in a pair is hypo-expressive, that can sometimes lend itself to the other one being forced to do more of the talking and communicating, whether they want to or not.
The Bible says “In the multitude of words, there wanteth not sin, but he that refraineth his lips is wise”. Any talking that I tried to do, in an effort to address this issue, could only result in more pain for me. A mama doesn’t want to be told by her new daughter-in-law to butt out. Yet the “nod and smile” approach certainly wasn’t cutting it.
It is scientifically proven that men use about 15,000 words a day, to the woman’s 30,000. (The same ratio even applies to the sounds made by male versus female animals in the animal kingdom). I think it’s fair to say Garrett falls further to the low end of the 15k, and you’ve read my blog, so you know how wordy and analytical I am. It is also a fact that men are capable of turning their thinker off at will. When you ask “what are you thinking?” and he says “nothing”, he is probably telling the truth. I think I would give my right arm to be able to do that.
Well, one day Garrett made the mistake of admitting to me that sometimes he is “just lazy about thinking”.
Oh, yes, he does rue the day he ever let that cat out of the bag!
I often felt like I had sprained every last brain cell in my noggin, whenever we had a serious discussion about anything we were trying to work through, and meanwhile his brain sat there sipping Perrier and never broke a sweat. He could roll right over and go to sleep and I’d lay there so incensed, so incredulous and frustrated that I could have slugged him in the pancreas with little or no remorse.
So what I’m getting at, (and yes, I am making a point here), is that there were underlying factors in the family dynamics that it took years to overcome. Being powerless to change anyone else, I wracked my mind trying to understand how the in-law situation came to be the hairy thing with fangs and claws that it was before it ever got resolved. Understanding stuff is important to me. It goes a long way to facilitate your tolerance of a bad situation if you can at least see the perspective of the other side.
Someone being “articulatively challenged”, I can understand and I can accept. But if someone asks you how you feel about something, or, what you thought about something, and you say: “I don’t know”, well that is unacceptable. If you don’t know, who does?
See, I didn’t just hate the way that it was between us and his parents. I had a really hard time just accepting it. I also felt a lot of the time, like I was the only one trying to actually bring about a resolution. I knew it was a matter of boundaries and poor communication. But how can any of that be cleared up, if you don’t even try to communicate?
For one entire year, Garrett and I made the decision it might just be best if I bowed out of the gatherings of that side of the family, so at least the rest of them could be together without all the underlying tension. At some point, Garrett finally began to fully understand the toll this sweeping-under-the rug policy was taking. When it hit him, it hit him hard. He got angry, and felt anger that went back a good ways. When he reached that juncture, he finally did resolve to initiate some discussion, but then there was some “last straw” incident between his parents and him that resulted in his choosing to put some distance between himself and them for a while. He contemplated writing off his relationship with them just to end the strain. I hated to see it come to anything like that, and I was especially concerned with how he would feel if anything were to happen to one of his parents while they were essentially estranged. Ultimately I had to sort of force him to go to them and just “lay all the cards on the table”.
There were things he had expressed to me that he so needed to say to them, but somehow he could never get the courage to say them, and it was extremely demoralizing for him. He would go over there intending to have his say, and just couldn’t get it said.
We just kept trying until I think we all managed to let go of some expectations, get real about what was going to be possible, and eventually settled into a workable (if not ideal) sort of truce. It wasn’t all bad, all the time, and I think that when push comes to shove, we have always been there for one another. I wish it could have been better all through the years, but it is what it is.
It was in mid 1999 when I began having episodes where I would collapse, losing all muscle tone and control, but not losing consciousness. This would later be identified as Cataplexy-(warning, video may be disturbing to some viewers. Others may laugh their tushie off) Imagine this type of incapacitation when you are in charge of 2 babies, or working over a gas stove, or driving?! The guys in the video are having fun with it, but believe me, when you don’t know why it is happening, it can be downright terrifying, and if you land in a position where your airway is closed, you can suffocate. Strong emotion, including laughter, is a cataplexy trigger, as are fear, anxiety, anger. The weakness can also be partial, just a hand, causing you to drop things, symptoms can last seconds to several minutes to recovery, and for myself personally, the episodes leave me feeling very tired. I like at 1:20 in the video where they sort of depict how it feels to the person it’s happening to.
It was very frightening to have those “spells” and especially when taking care of my kids. I also had been diagnosed as having Fibromyalgia, and that just seemed to get worse and worse. That was when I knew I had to leave nursing. I took full time work in retail jewelry sales, thinking maybe the less-stressful environment would help, but even that job still required being on my feet for long hours and nothing got better, meanwhile episodes continued to occur. After about 6 months I went to part-time, and in just shy of a year, I had to stop working altogether.
Garrett was working at the Steel Mill with shift-work hours and I was going from specialist to specialist trying to find out what was wrong with me, and undergoing every test known to the practice of medicine. Some doctors were downright condescending and certainly dismissive. I finally found a neurologist who took my concerns seriously, and he couldn’t totally rule out petit-mal seizure, but what was happening with me did not quite fit the bill for that condition either. He very gently suggested that I should see a psychiatrist, quickly stressing that he was not insinuating it was all in my head. Well, by this point I felt halfway nuts anyway, so what the hey? I made the appointment. By that time, I was experiencing even more bizarre stuff; a couple of hallucinations, racing thoughts that I couldn’t slow down. I couldn’t think clearly to save my life, couldn’t remember things, had difficulty completing even simple tasks, and despite being exhausted, I often could not sleep. I was feeling anxious and antsy and irritable one moment and crying the next. I described it as a “wired tired”. I never did experience the typological manic euphoria. My “up” was a feeling of being harried, and extremely irritable or jittery. Sometimes I couldn’t bear to even be touched, or have a breeze blow across my skin.
The Psychiatrist apparently diagnosed me as Bipolar and wrote that in my chart, but he never told me so. He had me schedule an appointment with the therapist, and prescribed several medications which rendered me unable to get up from the couch for a couple of weeks. Now, it’s not good to be having bizarre episodes of “falling out” incapacitated when you’re a mom of 2 babies, but nor is it ok to be unable to stay awake. I ended up having to stop the meds “cold turkey” on my own, and just grit my way through the horrible withdrawal that comes with that. When I finally was “sober” enough to drive, and went to see the therapist, she went through her perfunctory assessment/interview, and then she said “how do you feel about the Bipolar diagnosis?” I said, “Eh???”
She double-checked, concerned that maybe she had goofed and read something wrong, and when she was sure she read it right, she said, “yes, it says Dr. (so and so) diagnosed you as Bipolar 1 (the most extreme kind). I said, well, he didn’t tell ME that! Man was I livid! I was done with that doctor.
Another healthcare nightmare took place when I was out of state, had a spell, and went to the E.R. when I was at my folk’s place in West Virginia. I’d been to the emergency room twice the previous week at home, about these frightening episodes.
Well, the West Virginia Emergency Room doctor was going to send me home as well, but I told him about the other E.R. admits, that I was a nurse, and that I was really concerned that something was neurologically wrong.. I had two young children to think of, and somebody really needed to take this seriously. He admitted me for observation and called in a Neurologist for consult. I was put in a room to wait for the Neurology doctor.
About 6 hours later, the nurse piped over the intercom that the doctor was finally on the floor. In about 2 minutes a doctor came into the room and approached the other patient nearer to the door. The curtain was drawn between the two beds, so I couldn’t see the other patient or the doctor. He had an accent, and that conversation went something like this:
Doctor: “Ma’am, what seems to be your problem today?
Doctor: What is going on with you?
Lady: “Nothing, what’s going on with you?”
Doctor: “It is your nerves”
Doctor: “It is your nerves Mrs. Lloyd”
Lady: “I’m not Mrs. Lloyd, my name is Mrs. Harper”
Doctor: “You are not Sandra Lloyd?”
Me: “No, I am Sandra Lloyd”
(Curtain draws back)
Doctor: “Mrs. Lloyd, what is your problem today?”
Me: “And you are…….?”
Doctor: “Do you have a psychiatrist at home where you live?”
Me: “Excuse me? You have not even told me your name!”
Doctor: “I am the doctor.”
Me: “Doctor whom?”
Doctor: “Doctor Suchensuch”
Me, through gritted teeth: “I have been having these episodes where I fall down…
Doctor (cutting me off): “It is your nerves. I am going to write you a prescription for some sedatives.”
Me: “I did not come here to get a sedative, something is seriously wrong and you’re not even going to do an assessment, tests, anything?
Doctor: “I do not need to do any tests”
I asked: “Did you read my chart?”
Doctor: “No, I don’t need to read your chart, I already know what is wrong with you, it is your nerves”.
I asked, “did you read the E.R. report? ”
“No I did not”.
So I said, “I think you need to leave, I refuse to be seen by you”.
“You see, you are perfectly unreasonable”.
It would have made a hilarious skit in a comedy act, but I felt like I was in the twilight zone. I pressed the call button and asked for a nurse to come.
The nurse appeared, and I said, “I want to see a different doctor.”
She said, “this is the only neurologist we have”.
So I said, “okay, then there is no reason for me to stay here, I am leaving”
Doctor: “that is your choice, Mrs. Lloyd”
Me: “you bet yer sweet bippy it is, Doctor Phil!”.
The crazy doctor wrote me down as leaving Against Medical Advice!!!
I didn’t find that out, though, until the claim was denied and I got the Explanation Of Benefits in the mail. Hey, I had nothing but time, so after writing an extremely professional letter to the West Virginia State Board of Medicine and the insurance company, I jumped through all the hoops and paperwork involved in the appeals process, detailing all that I’d already been through (easily corroborated by my other recently-submitted medical claims) and how the doctor had behaved when he came in, they ruled it was not an A.M.A. discharge, and they paid the E.R. part, but there was a remaining balance. The hospital wrote off the rest of my bill when they got the letter I sent them, along with the copy of the complaint to the state board and the copy of the incident report I filed with the Nurse Supervisor before I left. The hospital also apologized for the doctor’s unprofessional behavior. The doctor still billed me for a consult, but after I spoke to his billing manager, that was written off. (All of that was several months of additional stress I really could have done without.)
Eventually my condition got so bad that I couldn’t pick up my kids, could hardly lift a gallon of milk, was having a lot of trouble with memory, and the pain was constant. I was pretty much incapacitated. Of course, the bills continued to mount, as well.
By then, Garrett was working at the Steel Mill. He worked alternating shifts. He is a creature of routines and habits by nature, and this wreaked havoc on his circadian rhythms. Then one night he complained of feeling weak, tired, and short of breath. We went to the E. R. and discovered his heart was in arrhythmia (Atrial Fibrillation). He was given medications to try and convert the heart back into normal sinus rhythm chemically, but still ended up having to get shocked with the paddles. With that came consults and tests and follow-up visits and of course he was still in the waiting period for his insurance to kick in.
I had gone to a different doctor for his opinion about the Bipolar diagnosis, and he affirmed it, but took a much more measured approach to medicating me. It took a year and a half for the mood issues to begin to stabilize and I began to sleep a little better. Eventually I also went for another sleep study, because the surgery didn’t seem to have helped my fatigue. I no longer was being startled awake during the night, wondering how a pig got in my room, (zzzz…….snore…..snort…huh what? Who’s there?) but the test showed that my breathing still ceased numerous times each hour through the night. (Apparently that surgery doesn’t actually prevent the apnea, but I tried to look on the bright side- even though I might still have died of hypoxia, at least I’d have gone out with quiet dignity!)
Most Ear-nose-throat surgeons won’t do that procedure anymore because they have found the obstructions of Obstructive Sleep Apnea are not just in the throat, but lower in the airway as well. There is also a thing called central sleep apnea, which is not caused by obstruction but neurological and chemical in origin. I was started on c-pap (continuous positive airway pressure) and started sleeping each night with that machine and the mask and chin strap, hose and all the various paraphernalia that entails. It took a long time to get used to, but eventually I couldn’t sleep without it.
Between periods of unemployment, illness or health issues in every single member of the family, and periods without insurance, we became terribly financially strapped. Garrett often worked a second job delivering pizzas or waiting tables.
When you have sleep apnea, it is not unusual for you to get high blood pressure, and to gain weight. I think that is because your body knows energy comes from food, so you always feel hungry, even if you aren’t. I describe it like feeding natural gas into a stove that has no pilot light. If the pilot light isn’t lit, the “fuel” just accumulates, and never burns. And that is what eating felt like. It didn’t provide any energy, meanwhile I just got fat! It is not surprising that the statistics of diabetes in people with sleep apnea are also high. Throughout the years, I often had periods when I was going to the YMCA or some other gym, trying to maintain, or regain, some strength when I could, but injuries and other issues often made that impossible for long periods. There was one time that I decided to get into the pool and swim a little, (when I was healthy, I was a lap-swimmer and jogger) but when I got out, I felt tremendous pressure in my chest and a squeezing cramping sensation in my jaw, felt overheated and weak and somewhat winded. I was about 34. I look back now, and I truly think that was probably a minor heart attack, but at the time it seemed inconceivable. I drove myself home, took a cool shower, and laid on the bed and fell asleep, and was fine when I woke up. I haven’t ever had anything like that happen again since then.
Fall of ’04 I was finally doing well enough to again attempt to work, and took a School Nurse position. I made it through 9 months of the 10-month school year before the fatigue and body pain reached the level once again, where it was nearly impossible to maintain my schedule . I had over 600 little patients, and half of them under 4 feet tall. My own boys went to school there, and were in second and fourth grade, so that was nice. It was a great deal of strain, bending, reaching, being up and down, on my feet, and moving non-stop. I even had a vocational rehabilitation specialist come in and analyze the tiny clinic space and observe my work for any ways that we could minimize body strain. In the end there were very few accommodations which could physically be made to the tiny space the school was using for a clinic. That was to be my last attempt at nursing work.
Anytime I wasn’t working, I was volunteering in some capacity, usually in the school and often with church. I also started our Neighborhood Watch.
My husband had to get out of that shift work which seemed to be at the crux of the heart problem as far as we could tell, so he went into business for himself that year, taking on business loans for a franchised auto detailing business. We did our homework on them, and everything seemed to be in order. We prayed about it, and felt the Lord was giving him the go-ahead. He traveled out-of-state for the training, bought a used work truck, outfitted it, got his equipment, and started making contacts, giving demos, and getting jobs. Part of the franchiser’s end of the bargain was the market analysis. Garrett had been led to believe there was really nothing in the way of competition for the particular array of services he would provide. That proved not to be the case, and what’s more, beyond the initial show of support, the franchise also was not forthcoming with the field support and other resources promised. He gave it an honest try, but the business folded before the year was up.
The only thing that got us through all of it was prayer, prayer, and more prayer!
During all of those years, depression almost constantly plagued me. I told my Dad sometime in 2006 that I really just wanted to die, I was so tired. He said he understood the feeling, but I had those boys to think about. Still, I was definitely at the end of my rope by the end of the next year. I had figured out in ’04 during the school-nurse stint that I likely had narcolepsy, but couldn’t get it diagnostically established. I actually figured it out when one of the teachers asked me something about a student who often dropped off into instant sleep in her class. She asked if I thought it might be narcolepsy. I said “Well, I know of Narcolepsy but not a whole lot about it. I’ve never actually encountered a patient who had it, let me read up on it and get back to you.”
That was when I discovered that some but not all persons with Narcolepsy have an additional and related condition called Cataplexy. When I read the description of Cataplexy, it accurately described the “spells” I was having. It only happens in people who have Narcolepsy. Problem is, Narcolepsy (click for video) is fairly rare, and cataplexy is even more rare, so very few doctors or nurses know much about it. (If you watch the video made by this very bright Canadian young lady, you can very much sense her sadness as she gives her excellent explanation and description of what Narcolepsy with Cataplexy is and how it effects one’s life).
The “hallucinations” that I had during the period when no diagnosis was made yet, and which helped support a Bipolar diagnosis, were probably the waking dreams phenomenon which the young lady describes in the video. Narcolepsy is really one of those illnesses that I think are still terribly under-diagnosed. Also, in those who took the swine flu shots, it has been determined they have a forty percent higher rate of developing narcolepsy, so cases are now on the rise. I stopped taking flu shots of any kind several years ago, but there are a lot of shots nurses have to take and stay current on, as a requirement for employment, which from an epidemiology standpoint, is understandable, however it is very disconcerting in light of the widespread concern with immunizations themselves.
Having a degree in nursing both helped and made things harder as far as the diagnostic process. It gave me confidence to trust what I knew about my own experiences, and that something significant was wrong, but since doctors and nurses “speak a different language” it was not always easy to get the doctor to appreciate that significance. Knowing enough to know something is seriously wrong, probably compounded my anxiety because what if it was one of those “ticking time bomb” type things? What if by the time someone would take my concerns seriously, it was too late? Plus, there are a lot of doctors who really resent informed, self-advocating patients. And I am sure that they do get patients who come in with nothing more than a bad case of WebMD, so I can’t say I blame them.
My Mom marvels at the fact that even while my brain and body were so sick, I somehow was able to continue advocating for myself and never gave up until I got the diagnosis and help I needed.
One neurologist I saw along the way, when I told her I thought I had narcolepsy, laughed in my face and said “you don’t get to come in here and tell me what you think you have, I’m the doctor, I will decide that”. (I can’t tell you how many times I cried on the drive or ride home from some doctor’s office).
My narcolepsy was finally officially diagnosed in 2007 after two more 24-hour sleep studies. I nearly gave up hope of having any quality of life by then, but the Lord put it in me to try just one more doctor. This one was a sleep specialist, who happened to also be a neurologist and a psychiatrist! (Uniquely qualified to differentiate between mental illness and neuro-pathology and what role sleep played in it all). It was definitely Divine Providence that I found this particular doctor. Also in the decade during which all of my numerous consults took place, the field of sleep study was really in its infancy. Most sleep doctor’s are Neurologists, though some are Pulmonologists. The body of sleep-science knowledge had come a long way by 2007. Garrett was with me at the initial assessment with the new doctor. At that point I had been sick for about 11 & 1/2 years. When the doctor came to the portion of the assessment which deals with state of mind, he asked me if I ever had thoughts of harming or killing myself. I got quiet as tears welled up in my eyes. The doctor looked up from his documentation and set the chart aside.
“it is not that I want to die, I just have lost all hope of ever having any quality of life again. I was 30 when all this started. I jogged, walked, swam, worked out, and had a successful career as an R.N. Now I’m in my forties and overweight and doctors just look at me and say ‘well, you’re hitting that age, and you could lose a few pounds’ and they check whatever portion of my body is their area of expertise, collect the fee and send me on my way. I have been looked at only in slices. I can’t keep a job, I hardly remember my second child’s babyhood, I have been to doctor after doctor, had every kind of test. I have a notebook 2 inches thick filled with my own notes detailing how this has all effected my life and functional abilities, copies of every test that has been done, every doctor’s note, and many of them I’ve written corrections in the margin where the doctor blatantly simply did not listen to what I said. For instance, wrote that I was having syncope, when I clearly stressed that I do not lose consciousness during these episodes but the doctor wrote syncope anyway! I can’t get anyone to take this seriously!”
That doctor said, “bring it to me, I will read it“. I said, “What?” He repeated, “bring it all to me” and then he walked around the desk, asked me to stand, and wrapped me in a hug and said “I’m going to help you”.
He did the sleep study and it took well over a week for him to finally call me. When he did, the first thing he said to me was “your brain waves are extremely chaotic and were very difficult to read”. I said “try living with them!”. He laughed, and then said, “seriously, I don’t know how you have been able to function!”.
Finally! Someone gets it!
He said, “there is a lot of quirky stuff in your particular profile that I could see how it muddied the diagnostic picture, but you were right, you have Narcolepsy”.
I said, “but you’re sure, I mean, you are confident of that diagnosis?
He said, “yes, I definitely am”.
And he did help me. Narcolepsy is more than just going to sleep unexpectedly at the drop of a hat. It is a complete breakdown of the sleep apparatus. It was as if I had not even slept in years. Not only was I waking up every 8 minutes or so, due to the apnea, but I was not ever reaching the stage of sleep where real recovery and rest take place. I now take a medicine that puts me into those deep stages of sleep. I have to take it twice at night because it has a very short half-life. It costs over $10,000/month. By the grace of God, insurance pays some, and a charitable foundation provides a grant to pay most of the other part, otherwise I would not be able to have it. Also by the grace of God, it has given me back some semblance of a normal life. I had a couple of really good years after that, and even worked part-time again summer before last, though not in nursing. It was a customer service concierge type position which allowed me to minister to the families of patients in the I.C.U. I enjoyed it, but that, too, exacerbated the body pain, back pain, and fatigue and only lasted through the summer. I already know that the longer I push myself when I start getting flaring of the symptoms, the worse they will get, and it will also start to bring on the difficulty concentrating and memory issues and cataplexy. Fibromyalgia sufferers experience “brain fog” anyway so between the various conditions, the “good-functioning” days can be few and far between.
My sleep doctor left the practice and went on to work with returning vets at the Veteran’s Administration. I was very sad to see him go. I had written him a nice note after he diagnosed me, thanking him and telling him how the Lord had led me to him and how He had used him to give me my life back. I had painted a snowy Christmas scene of a church on a large stone and gave it to him the previous Christmas. He never moved it from the spot where he set it the day I gave it to him. He actually got a little teary-eyed at my last appointment with him, when I thanked him again, and told him I wished him well. He said “you! you were that rare patient….” He couldn’t finish, but I got the gist of it. Doctors can’t help everyone, and a lot of times they probably feel like the patient isn’t even trying to help themselves, but he knew that wasn’t the case with me and I got the impression mine was one of his more rewarding cases.
As a nurse, I could understand. I had always kept my R.N. license current, hoping that someday I could do it again, until this year. After the severe exacerbation of last year, and with my age, it is simply not realistic. I mourned that loss all these years that I couldn’t do nursing. I loved it and I was good at it, and the money sure would have come in handy. But, life does not always cooperate.
We look back and think of the dreams we had when we found one another, of things we had hoped to do to the house, trips we hoped to take with the kids. But at the end of the day, we still feel that we have much to be thankful for.
Garrett has been in his present job for over 5 years now. He has required the cardioversion procedure 4 more times over the course of the last 5 years, and doctors do not know what the cause is. If you have been with my blog since the beginning a year ago, you know that 2012 from February to July, my symptoms took another nosedive that was worse than anything prior, and we thought it was some sort of auto-immune and/or connective tissue condition. (Narcolepsy is also auto-immune in nature, having to do with a substance called Orexin in the brain). Additional auto-immune issues are still not ruled out entirely, but thus far, have not shown up on tests. At least I now am established with a Rheumatologist and won’t have to wait to be seen if it ever gets that bad again. We think that a D.Y. I. basement renovation early last year may have been a trigger for the exacerbation of the pain and the severe weakness (so severe that it was resulting in falls), although I had a similar episode a few years prior. When I fell during that first one, I ruptured a disk, and my spinal cord was severely compressed. I had a laminectomy and fusion in December of 2009 and also found out I had scoliosis which helps explain some of my other back and joint issues, my whole frame being off-kilter. Fibromyalgia is still a rather mysterious condition so as it stand, we’re tentatively attributing last year’s flare to that and there are no new diagnosis to add, (as if I needed another)! Fibromyalgia, Chronic Fatigue Syndrome, Sleep Apnea, Narcolepsy with Cataplexy, Depression and Bipolar (or PTSD?) Scoliosis.
I also have significant hearing loss, and have hearing aids, but even my hearing loss is a sort of oddball variety. They call it a “cookie-bite” on account of the shape of the graph when you plot the audimetry. But what it amounts to is it is not a mere matter of loss of volume. I have particular difficulty in hearing specific sounds. Soft sounds like p,d,th, h, n, m, etc. The effect of this is that it really interferes with my deciphering of human speech. Where a sound is missing, the brain has to fill in. It can result in some hilarity, as I have to employ a combination of lip-reading, body-language analysis, hearing, and plain old guessing. You can see how that would be hindering in a job situation, and on top of other sensory issues, I simply can’t tolerate wearing the hearing aids for long, as it also magnifies the annoying sounds like the refrigerator motor, ticking clocks, birds, traffic. Forget wearing them in a noisy restaurant! Mostly I only wear them at church. When I did have to use the stethescope after getting the hearing aids, it meant having to take them out every time. Though they do make special stethescopes that are compatable, they are very expensive. I could have had a real nice set of one carot diamond earrings for what the hearing aids cost, and insurance doesn’t cover it because apparently they consider hearing to be a luxury once you are past the age of learning to speak! Plus, all that expensive technology in that wee bitty hearing aid, generally only has a lifespan of 7 years before you have to buy a new set. Mine are over 7 years old now!
After we diagnosed the Narcolepsy and treated it, I had no more need for medication for Bipolar. Once when my regular psychiatrist was out for a while with a family emergency, I saw a different one, and he disagreed with the Bipolar diagnosis and said he thought my symptoms were more indicative of post traumatic stress disorder. In light of my life history, I think he may be right.
Of course, as my blog readers know, I’d hardly gotten beyond the difficult episode the first half of 2012 when we lost our dear neighbor and friend Johnny in August, then my Dad died in November, and Garrett was diagnosed with colon cancer in December. He had surgery to remove a tumor that the doctor said was probably 2 years old, and is now taking chemo. His prognosis is good, Praise the Lord! He just finished his 4th round of chemo last week. We are 1/3 of the way through! He’s still working most of his full-time hours. He is very tired, though.
But you know what? We continue to count our many blessings. It sounds horrendous, and yes, there sure has been some rocky terrain, but even though we have been through a lot, we have gained so much from it. I will get more into the upside in all of this as I go along, so stay tuned!
Go To Chapter 7
(Bonus: go to Randomosity Interlude)