A Day In The Life

My yesterday:

I had an appointment with the orthodontist at the sleep clinic to be fitted for the sleep apnea dental appliance. I already postponed this appointment a week since I’d been feeling so awful and, even though I’m still feeling awful, I didn’t want to cancel again. I’ve actually started to think that maybe part of the reason I’ve taken such a prolonged downturn is because I haven’t worn the cpap in two or three weeks, so I need to get this fix-apnea show on the road. [Quick aside: last week, when I called to reschedule, I told them I had an appointment with the orthodontist, but couldn’t remember her name. “Dr. P—–? She’s actually a dentist,” the receptionist corrected me and it’s been bugging me all week. I just googled Dr. P.: Nope, the doctor is an orthodontist and completed her residency at Harvard School of Dental Medicine and was on the orthodontic faculty at the University of Tennessee, College of Dentistry. Maybe this bothers me because my father is an endodontist and there is a significant amount of additional education and expertise that goes into a dental specialty. (I was on my way to becoming a Registered Dietitian once upon a time ~ a 2-year full-time graduate program that was going to cost me $50,000 ~ before I could even apply, I spent a year taking prerequisites that I didn’t have from my Bachelor’s degree: anatomy, physiology, biochemistry, organic chemistry etc. Virtually every time I talked to someone about my future career, they would confuse what I was doing with being a “nutritionist”. The distinction was important to me. Anyone can call themselves a nutritionist! Beware, those of you in the US: a “nutritionist” can be an 18-year old that read a lot of cooking magazines in her bedroom and decided to hang a shingle outside her door. There are no legal or professional regulations!) But mostly I think the mistake bothers me because I was incorrectly corrected… And you should know the staff… Rant over.]

The orthodontist, Dr. P., was really nice and very sympathetic to my situation. She said my teeth and jaw bone looked wonderful and my movement (of the jaw back and forth, side to side) was great and I was perfect candidate. She warned me that my teeth might shift from the appliance (like having braces) and my bite might change slightly and my jaw might hurt in the beginning and that they will give me exercises every morning to help stop the “muscle memory” in my face/jaw/head that will have a tendency to keep my jaw in the forward position it’s used to from 10 hours in bed wearing the device. She took the impression of my teeth and then told me to make an appointment for 5 weeks from now for the fitting. No. Way. Everything takes so long! It’s going to be another 2 months before I can even try out this device. Boo.

Unbelievably, this appointment was 1.5 hours (how could I have predicted that?!). The orthodontist was very thorough and explained everything in great detail, which I appreciate, but her office was windowless with horrid lights in the ceiling and at the 45 minute mark I was already losing focus and slumping in my chair. I had driven myself to the sleep clinic because it is very close to my house, but I had an acupuncture appointment afterwards downtown for which I need a chauffeur. I planned to meet my husband at home, but the appointment went so long, I asked him to come to the clinic to get me. Dr. P. gave me the option of coming back another day to have the impression done, but that would have postponed the whole process ANOTHER week. I called to warn the Good Master acupuncturist, my husband left his work truck in the sleep clinic lot and, before we got to the highway, I realised I had to eat something. Acupuncture on an empty stomach is no good and, if I didn’t eat something until 5pm when we got home, I would collapse. Because my diet is such a nightmare, the easiest thing to do was go home and quickly microwave some of the amazing leek and turnip soup my husband had made the night before… Of course, now it would have been much better if I had just driven home myself and met my husband there, rather than abandoning his truck at the clinic.

My acupuncturist only inserts needles in the ears, forearms, calves and feet. I may feel and look like crap, but I still have a modicum of vanity and, on the drive downtown, I was clipping my toenails and moisturizing my legs while eating my soup and reviewing my symptom calendar so I could accurately recount how I have been feeling since my last appointment. All this while sitting as far to the left of my seat as possible ~ practically on the center console ~ to avoid the blaring sun on our west side, threatening internal combustion and making my headache even worse. Once I got there (only ten minutes late!), he said he didn’t want to aggravate anything with acupuncture today… Wow, I had even shaved my legs. Instead, we talked about the Chinese herbs. Finally, after all these months, I was ready to buy a bottle. I’ve been waffling about this treatment for so long! He was quite excited. During our very first appointment last September, not even knowing that I would be one of the 1 in a 1,000 patients that had negative reactions to acupuncture, he had said, “Chinese herbs will be the most important thing for you.” He has always maintained that I have Gu Syndrome and these herbs are the key to my recovery. What finally made me come around was: 1) Dr. Chia’s video (if I had journeyed all the way to California to see him and he had put me on Chinese herbs after the Good Master spent 7 months steadfastly and confidently urging me to take his pills, I would have been mortified. They use different herb blends, but I trust my acupuncturist completely). 2) I started to feel worse. If I had stayed on that uphill trajectory, I wouldn’t have wanted to rock the boat by introducing anything new. So, maybe this crash will be a blessing in disguise.

The best part of this visit was he persuaded me to take my first pill while we were sitting there talking. He knew full well I might go home and not open that bottle for months ~ if ever. I’m such a chicken. Eat something with a lengthy ingredients list of things I can’t pronounce? Swallow something containing herbs my body has never encountered before? No, thank you. Not this delicate flower. But, the thing is, even though I know I have a sensitive system, I really still believe in the resilience of my body. She’s been a trooper all these years. So, I took the pill while he watched and I took another a few minutes ago and I feel fortified ~ emotionally, if not physically. Yet.

My appointment was so short that my husband was still about 15 minutes away when I finished. I was a mess. I was a shuffling pile of jello, slurring my words, bumping into walls. I literally did not manage to exit the elevator into the foyer before the doors started to close again ~ that’s slow! PWME (people with M.E.), you will appreciate this: I didn’t want to wait on the loud, busy, beepy, dusty street corner, so I wondered into the mattress store in the bottom of the acupuncture building and mumbled something to the socially-awkward salesman about needing a new bed. He looked at me uncertainly because I’m sure I sounded drunk and I was having a hard time walking. I told him I had an injury and didn’t want to walk around the store, but I would lie on this TempurPedic in front of me to see how I like it. Writing this, I’m laughing out loud because it really can be tragically hilarious the things we do to catch a rest break. (By the way, I wasn’t totally lying: I have a new plan to put a twin mattress in my meditation room, so my husband can have our bedroom back.)

The end of the story is that I was virtually comatose on the drive home, other than being able to feel every divot in the road grind my vertebrae together and batter my brain against the walls of my skull (note to self: win the lotto and buy the smoothest, quietest, comfiest car on the market). I tried to muster up the energy to drive home from the sleep clinic parking lot so my husband could drive his truck, but I was unsteady on my feet and I was really having a hard time opening my eyes and speaking clearly. It was just like the time I got pain killer and muscle relaxer injections in my butt for a sprained neck. I was all floppy and out of it. So, we went home instead and I don’t even remember stumbling to bed where I stayed for two+ hours. My husband took a taxi back to his truck.

It wasn’t until after 7pm that I read the news about the bombs at the finish line of the Boston Marathon. There are no words to describe how I feel about this tragedy, but I am once again filled with gratitude for those people that don’t turn away from suffering. From the first responders and the medical personnel that make helping their careers, to the bystanders and strangers that jump in to help without hesitation, to the friends and family that provide ongoing support to those that hurt… holding hands, holding vigil, holding hope… Thank you.

Title Credit.

Doctor, Doctor, Gimme the News

I couldn’t decide whether to use this Robert Palmer song for my title or the equally cheesy and almost as ancient Thompson Twins song: Doctor, Doctor, can’t you see I’m burning, burning… Have to say, I like the latter better, but I don’t currently have a fever, so it didn’t win out. 🙂

I wrote this post yesterday before I launched into the exciting day of driving myself to appointments. It’s kind of unfinished, but I’ll publish it anyway and get on with resting up…

I got the results from the saliva and stool sample tests that I sent off almost a month ago. I don’t have the hard copy results in front of me yet, but the doctor called me yesterday and I took furious notes. Here’s the wrap up:

  • IgA antibody tests for milk and eggs were negative and gluten was 4 (he said they consider below 6 negative). These results could be because I am not sensitive or they could be because I am sensitive, but I haven’t eaten any of these foods in 7 months (almost a year for gluten) ~ and I’ve been very strict with no cheating. Soy came up as “equivocal”, meaning not negative but not a strong enough reaction to be positive. He suggested I stop eating soy to give my gut the maximum opportunity to heal in case it is causing inflammation or reactions. I don’t eat soy a lot, but the things I do eat with soy, I really don’t want to give up: namely, Vegenaise (I can’t have the eggs in regular mayo) and soy creamer in my tea (I’ve tried all other options ~ soy creamer is the best mimicker of milk in my black Irish tea). He said I have to watch out for soy lecithin, which is in a lot of processed food. My Earth Balance fake butter has soybean oil and soy lecithin in it, so he said I could probably use butter since people with dairy sensitivities usually do fine with butter (just to be clear: I don’t know if I have ANY sensitivities to foods, I am just doing this diet to help my gut heal, decrease systemic inflammation and increase good bacteria).
  • DHEA was 6 with a range of 3-10. He said that indicates that I am no longer in severe adrenal fatigue.
  • 17-hydroxyprogesterone was 22 with a range of 22-100. He said this indicates that I am in a high cortisol output state, but, because my DHEA isn’t extremely low, he thinks my adrenals still look okay.
  • H. pylori was low = negative.
  • When my stool was cultured for yeast, it was negative.
  • Estrodial was 8 with a range or 2-10.
  • Progesterone was 45 with a range of 20-100.
  • Chymotrypsin (a digestive enzyme component of pancreatic juice) was 12 with the range being >9. The doctor interpreted this as showing my digestive enzymes were okay and my pancreas is working.
  • No signs of parasites or infectious disease-causing bacteria like Campylobacter, Shigella, Salmonella, E. coli etc.
  • Levels of two enzymes (lysozyme and alpha-lactalbumin, I think?) that the gut produces when it’s irritated were low = good.
  • My bacterial balance still indicates gut dysbiosis, unfortunately (which, by itself can lead to immune dysregulation and both can lead to mitochondrial dysfunction). I am still low in friendly gram-positive bacteria and too high in gram-negative bacteria. He said I am doing everything right (bowel help, elimination diet and probiotics), so he is not sure why this is not getting better. But, he said keep doing what I’m doing.
  • The other significant result was the salivary cortisol test:
    • Morning = 16 Range 13-24
    • Noon = 10 Range 5-10
    • 4pm = 8 Range 3-8
    • 12am = 7 Range 1-4
      • Apparently, my pituitary is turned on all the time and my cortisol is not going down enough at night, which is probably why I am not sleeping well. He suggested taking phosphorylated serine (a supplement called Seriphos made by Interplexus), starting with half a capsule an hour before bed. He said this is an amino acid that will help turn down the cortisol.
  • Lastly, he said I should avoid genetically modified foods by trying to choose organic fruit and veg as often as possible. I kind of scoffed at avoiding GMOs, mostly because I didn’t want to think about ANOTHER thing to avoid, but he gave me a speech about what scary gene manipulations are being done and how many studies are suppressed by big money (ie: Monsanto), so… okay, I’ll take it more seriously. [There is such a ton of shocking information out there, that this subject needs a separate post all to itself.]

THEN I had an appointment with my new sleep doctor. I love him, thank god. Once again, I spent a few days this week weeping from the burden of this disease. Lack of sleep not only increases all the symptoms of ME/CFS, but it also causes the usual black fuzzy cloud of irritation that healthy people experience when they don’t sleep. My friend Z., who has a new baby, reminded me of this. Even healthy people are exhausted and overwhelmed when they are woken up throughout the night, night after night, so I’m cutting myself some slack. Having said that, after having quite bad diarrhea from the Valerian supplement I started last week (my body is SO tolerant), I was finally ready to consider a prescription sleep drug. Especially after reading this post over on Learning to Live with CFS.

Dr. M, my new sleep doc, gave me a few new options for sleep and then pointed out, “Note that I am not reaching for my prescription pad. We can go there, but not yet.” Low dose anti-depressants may be the answer, but I love doctors that try everything else first. It makes me feel listened to ~ respected. First he said, for very light sleepers, CPAPs can replace the waking problem of apnea with the waking problem of a foreign object attached to your face. Well, no shit! Finally someone who doesn’t say, you just have to work at getting used to the mask and it may take months.

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Just get used to it!

He told me to add another mg of melatonin about 3 hours before bed and keep taking the 1mg right before I go to sleep. He recommended getting a custom-made pair of earplugs from a hearing aid store. They will cost about $100, but he said they will be a very good ~ and comfortable ~ investment. I should try going to bed a little later ~ he thought that I may wake up 5 times rather than 15 times if I went to bed closer to what I thought my natural sleep time would be (I told him, in a perfect world, I think my sleep schedule would probably be around 12am-8am). He warned that it sounded crazy, but putting a gel ice pack under my neck and head when going to sleep can help and, even better, take a bath 3 hours before bed and then do the “cool head” routine to really exaggerate the effect. He recommended I read Too Loud, Too Bright, Too Fast, Too Tight, more than anything to get some solace in the fact that I’m not alone. Finally, he thought we should try a dental appliance to replace the cpap since my apnea is mild (although, he did confirm that I have a physical apnea problem ~ not just heightened brain activity. He thought the throat narrowing is probably a congenital disorder that has affected my sleep all my life). This is not my dentist, but the page gives example images of dental appliances, if you’re interested.

Aside to my Dad: I KNOW, you told me so. But I wanted to give the cpap a fighting chance. Plus, I really liked breathing filtered air all night instead of dust mites and dog dander. Plus, I invested a lot of time and money getting to know the cpap life. Dr. M. warned that it won’t be a quick and easy transition to a dental appliance. The dental device takes time to make and, once I’m using it, it will take a few visits and a lot of tinkering to get it fit perfectly. He said it will shift my teeth a minuscule amount and cause some jaw discomfort, but it can ultimately help TMJ disorders, as well as apnea.

More later when I’m up to it. The snow from my last post is gone already ~ just in the time it took to edit this, maybe half an hour. So, new gratitude:

TO THOSE FRIENDS THAT HAVE NOT LET MY ABSENCE FROM LIFE SCARE THEM AWAY: THANK YOU FOR BEING THERE. There are no words to describe how much I have needed you and how you have buoyed each day and given me the strength to keep fighting this. Isolation is a killer and feeling like you’re not interesting/funny/able to contribute/able to participate can start to make you feel a bit worthless. If I’m not brimming with energy, quick-witted and able to talk about life’s new adventures, would I want to know me? So, you know who you are: I don’t take you for granted for even a single second. [Again, this subject needs a separate post all to itself.]

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… love … love … love … love …