I will post about my visit with Dr. Chia and I will write about successful travel with this illness, but first let me tell you about the trip to California.
After two years of being housebound, only leaving my house for doctors’ appointments, never going to a friend’s house, coffee shop, grocery store or cinema, never taking a drive to look at the ocean or waterfalls or mountains, my longest excursion being a 45-minute journey to a doctor out of town, I’m going to California to see Dr. Chia.
I made the appointment months ago after rereading No Poster Girl’s advice for the newly diagnosed. I’ve seen 40 healthcare providers in Washington and really, truly feel that the only substantial help they have been is ruling out brain tumours and cancer. Countless visits, horrendous amounts of money and unimaginable energy expenditure… all wasted, unfortunately. Although, my physical therapist has helped my pain but, alas, I must stop seeing him after Monday because my private health insurance coverage ends.
I based my decision to see Dr. Chia mostly on geographical proximity, assuming that we would have to drive wherever we went. His practice is in L.A. I also considered Dr. Peterson (Reno), Dr. Kogelnik (San Francisco) and Dr. Bateman (Salt Lake City). The latter would probably be my first choice, but it seems she really isn’t taking new patients. I battled between Dr. Kogelnik and Dr. Chia, but decided on Dr. Chia mainly because I knew more about him. I have followed my friend Patrick’s experience with Dr. Chia closely, have read Christine McLaughlan’s articles on Health Rising, and have watched all of the ME/CFS Alert video interviews with him.
In a nutshell, Dr. Chia is an infectious disease specialist who believes enteroviruses are at the heart (or gut) of ME/CFS. I will never forget reading Patrick’s account of his ME onset. He said he had surfed at a dirty beach, became ill a few days later, recovered and then got the Tdap immunization and, 5 days later, crashed with ME and never recovered. I swam in a lake in Virginia, came down with a GI illness a day or two later, recovered and then got the flu vaccination and, 11 days later, had acute-onset ME. We had such similar etiologies, although, I believe Patrick was otherwise healthy and, in my case, these came on top of a plethora of other issues such as working too much, never resting, lots of dental work, lots of traveling, bronchitis, vasovagal syncope, angioedema, anaphylaxis, unknown detox issues, IBS-C blah blah blah. But I knew the diarrheal hell was the penultimate cause and the flu vaccination was the shot that broke my immune system’s back. So to speak.
I was in such bad shape last December, I didn’t think there was any chance of my being able to keep this appointment. Five months flew by and my husband and I hadn’t discussed the logistics of the trip or renting an RV or whatever (I don’t even think he knew I had made an appointment), but, before I called to cancel (because, seriously, who goes to California to see a doctor for an hour?), I asked the good people of Phoenix Rising whether they thought I should do it. They were incredibly supportive and answered with an overwhelming YES! Uh oh. Really? But, at this stage, I’d have to fly. I assumed I’d never fly again. I don’t know what a flight would do to my symptoms, let alone the whole trip. So, I asked my family what they thought and they answered with an overwhelming yes and, not only that, but they all offered to help in so many ways: come with me on the trip, stay in my home to watch the dogs, research rentals, help with money, accompany me to the appointment, donate miles for a plane ticket etc. I was flooded with love and encouragement and, suddenly, for no other reason than I wanted to ride the wave of excitement, I decided to go. If not for Dr. Chia, for me. To know that I could leave this house. To create new memories — even hard-won ones — that aren’t these four walls, this bed, this garden. The truth is, I’m terrified and I know enough about Dr. Chia’s treatments to know that it may be a one-off visit and it will probably be a dead-end. But, I’m still going to do it. And I’m going to close my eyes everyday until my departure date and envision safe travels with stable blood pressure, steady legs, no vertigo, no headaches, comfortable body temperature, no chemical or food reactions, no collapsing or swelling or bowel issues, and good sleep. I’ll write more details in my next post.
Telling myself it’s not as hard, hard, hard as it seems.
I’m sneezing, I’m short of breath, my nose won’t stop running, my throat is sore, my muscles ache, I’m exhausted, I have a headache, my temperature is 99.7 degrees, my face is flushed but my feet are numb, I’m pasty, and my husband says I’m “more purpley-eyed” than usual. But I don’t think I have come down with a cold, flu or new virus. Such is the life of someone with ME/CFS. That doesn’t mean I’m not scared of catching something. I don’t have an attitude of “Why would it matter if I caught a cold? I’d just feel the same.” Instead, I’m terrified all day every day of coming down with anything that could pile hellish symptoms on top of hellish symptoms. I’m terrified of how it will feel and what complications I might have (asthma, bronchitis, pneumonia) and whether it will set me way, way back in my recovery. The current media hype doesn’t help. It’s all the news is talking about! Worst flu season in decades. It’s now at epidemic levels. Virulent strains that make you sicker and last longer than the usual flu.
I think, there’s a flu epidemic every year, relax. But it actually seems true that this season is worst than most. If you read the comments after the NY Times articles, there do seem to be many healthcare workers saying things like, “I’ve been an ER nurse for 27 years and have never seen so many patients so sick with the flu.” There is a silver lining to my current situation: I don’t have to be out in the infectious world. Of course, that doesn’t stop me from worrying. This is the first year I haven’t had a flu shot and this is the first year I have known that recovery doesn’t always happen. I have my own personal form of PTSD. I’ve alluded to it, but it’s not something I’ve wanted to get into in depth in this blog because I guess there is some level of shame attached… I don’t want judgement. I don’t want eye rolling. I don’t want anyone to say relax or don’t worry or it’ll be okay. I don’t want anyone to try to give me advice on how not to have these thoughts. I don’t want anyone to insinuate I have to get over it/ get medicated/ get help. Most of all, I don’t want anyone to think I’m a hypochondriac. Because I’m not at all. Hypochondria is very different from fear of getting sicker. If anything, I have a tendency to ignore symptoms for too long ~ from insomnia to thyroid problems to my neck injury to the more serious stuff. Now I know: recovery doesn’t always happen.
Before New Year’s Day 2012, I never really gave viruses and infectious diseases a second thought. They never concerned me. I felt pretty indestructible, impenetrable, durable… I was able to overcome anything. When my husband was horribly sick with chicken pox, it never occurred to me not to tend to him, not to touch him, not to go to the doctor with him (quick aside: my husband is 12 years older than I and looked particularly haggard after suffering for days with the pox. I was wearing yoga pants, a hoodie and a baseball cap. The doctor turned to me and said, “Would you like to stay in the room with your father?” I looked at my husband. “Is it okay if I stay, Daddy?” I found this hilarious for ages until ME aged me considerably in the past year. Comeuppance).
One of the sickest people I’ve ever encountered was sitting beside me on a plane. I thought he might die from whatever horrible illness had him coughing, spluttering and moaning ~ but it never occurred to me to change seats or even point out to a flight attendant that perhaps he was too sick to fly.
I worked in restaurants my whole life. In the restaurant biz, you only take a sick day if you can get your shift covered. And that’s a difficult thing to do. So, there are always sick employees, there are obviously going to be sick customers, I am handling a lot of cash, I might lick my finger as I count out your change. I am handling your glasses, plates and cutlery and I don’t get a chance to wash my hands as often as I should. We are all stuck indoors together and, for most of my restaurant years, the rooms were filled with cigarette smoke. It never occurred to me to be worried about catching something. If I got a cold, I worked through it. I got bronchitis regularly and would work through it. I was once in the toilet at work sniffing, snuffling, trying to deal with a nasal mucus crisis and one of my coworkers thought I was snorting cocaine. Yeah, right! Nope, just trying to avoid snot falling on my customers while I take their orders.
In college, I remember going to the campus clinic because my chest infection wasn’t going away. The lowest number on the lung capacity chart was for a 4’6″ tall 80-year old woman. My lung capacity was below that. Off the chart in a bad way. I’ll never forget the doctor looking askance and saying emphatically, “You walked across campus just now? You have asthma. You have to take it seriously.” I still don’t believe I have asthma.
So, I’ve had a lot of colds in my life and had hospital stays for weird things like suspected meningitis, lumber puncture headache and anaphylactic shock, but they never created any sort of ongoing anxiety or trepidation. Even after three or four trips to the ER for vasovagal syncope on the first day of my period, I still didn’t really worry about it. It wasn’t until one episode when my blood pressure and pulse fell very low and stayed very low that I started to get a sense of foreboding when my period was due. I would tell one of my friends at work what to do if I collapsed. If it were the weekend, I would be sure to shower “in case I have to go to the hospital” and I started to be cognizant of what outfit I was wearing for Aunt Flo’s impending visit (ever since the EMTs had to help me on the bathroom floor while I was wearing red underwear with hearts and a 15-year old threadbare tshirt that was literally hanging off the neck band in tatters. It was incredibly comfortable to sleep in, but I’m sure, as they entered the bathroom, they were wondering whether I was on the floor from a physical assault… or perhaps a tiger attack).
I started to get more cautious in 2011. I hadn’t come down with ME/CFS yet, but something was going on. I was having dizzy spells, but I chalked it up to low blood pressure. I was having bad neck problems that were giving me a hard(er) time sleeping. I had a collapsy episode in Ireland that had nothing to do with my period. My tongue swelled up for days, which hadn’t happened in a decade and was not alleviated by antihistamines. I had bronchitis and then a bad diarrheal sickness. I was under constant stress at work and it was taking a heavy toll. I became aware of sick people around me, not wanting to sit beside someone who was coughing, knowing ~ almost subconsciously ~ that my immune system wasn’t quite up for it. But I continued to push myself. Then I got the flu shot and the rest is history.
Which brings me to the point of this post. In those first few weeks of 2012, I developed what I affectionately call my Brain Virus because it happened so quickly and consumed my thoughts so thoroughly (let’s hope I don’t actually ever get a brain virus like the one I saw on Monsters Inside Me last night). I’d been diagnosed with malaria and told that I needed long-term drugs that could be dangerous to a sensitive system… but then they left me in limbo for two weeks while waiting for a second confirmatory blood test to come back. I was so sick and so spooked by my symptoms. I spent those two weeks in abject fear, ruminating about the anti-malarial drugs and thinking, What if it’s NOT malaria? What the hell is wrong with me? During those few weeks, the Brain Virus ran rampant and suddenly I was scared of anything that might make me feel worse. Flu, colds, food poisoning, MRSA, flesh-eating bacteria etc. I didn’t become a germaphobe ~ I didn’t start cleaning obsessively or stop rolling around on the floor with my dogs or anything. In fact, I stopped using antibacterial soaps to try to make my immune system more robust. But my brain was talking a foreign language, sounding warning bells. Mr. Fear was on high alert ~ he was going to protect me, come hell or high water. I imagined him sitting on top of my head with an arsenal of weapons, peering frantically through night-vision glasses and binoculars, whispering warnings in my ear: Watch that cut on your finger that isn’t healing! Wash the outside of that avocado in case the knife carries the E. coli into the center! Hubby is sneezing, don’t kiss him goodnight! Having never thought twice about being in enclosed spaces with people, I started to sit in the far corners during management meetings at work. I watched a mother teach her son how to push the hospital elevator button with his elbow and I thought, why didn’t that ever occur to me? And then quickly on the heels of that I thought, Jesus, hospitals are where sick people are! I know: duh. But I’d always thought of hospitals as places to make me better, not get me sick. So, I started wearing masks.
It’s not that bad anymore. Mainly because I have done a lot of meditation and worked hard on stopping the circular thoughts. Mr. Fear is an educated and protective friend when he’s not panicked, so I tell him: I hear you, dude, but I’m okay. There is no point in being worried until it actually happens. And even then, worrying won’t help heal me. It’s been almost one and a half years since I was sick with something besides ME/CFS. Maybe it’s because I haven’t been working and haven’t been out much. Or maybe it’s because my immune system is activated and attacking everything that comes near me ~ including me.
Another silver lining in this situation: It has quashed my old fears. My fear of flying has vanished. I am now afraid of breathing the air in a plane, but I’m not afraid of a plane crash at all. I’d welcome the chance to get on a plane. And I’d sleep in a tank of spiders for a month if I could feel unbreakable again.