Tag Archives: doctor

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LDN Day 12… Let’s talk about drugs, baby.

Last night I spent 10 hours in bed and got 7 1/2 hours of sleep. Not bad. My Zeo says I woke up 8 times in the night, which I hardly noticed – it was so much better than my usual 15 or 16 times. This is the longest stretch of over-7-hours-of-sleep-nights I’ve had in as long as I can remember. Ever? And I feel stronger. Is it the low-dose naltrexone? I am still skeptical. I started keeping my thyroid medication next to my bed, so when I wake at 6 or 7 or 8am, I take it and then tell myself I can go back to sleep for an hour. It has really helped. I have to take my thyroid hormones on an empty stomach and wait an hour before eating or taking other supplements, so it has always been the thing that gets me out of bed (when I’m not working).

Yesterday, was uneventful symptom-wise, which is wonderful. I did a bunch of housework and then relaxed. I was tired, but not exhausted. I had muscle aches, but nothing severe. My main concerns were: the painful tingling in my left thumb, my itchy, clogged ears, my neck pain, my mood, and my body’s complete lack of effective thermoregulation. That is nothing, believe me. There have been so many months when I would say, my main concern is not dying, so this is great. And I don’t want to jinx it by getting too excited. I still have ridiculous constipation and the breakout on my chest, but I’m sure these are transient problems that will go away once my body gets used to the diet change and pills.

Speaking of pills, I may as well give you the run-down on the prescription medications I have on top of the supplements. Bear in mind, most people with CFS / ME — or any of the other afflictions that cause muscle pain/ cramping, IBS issues, sleep issues, mood disorders etc. — are on many, many more drugs than I am. I have been told by multiple doctors to try steroids, anti-anxiety meds, anti-depressants, stronger pain killers, sleeping pills, muscle relaxers, anti-spasmodics, anti-convulsants… It goes on and on. I keep refusing. Not only do I have a sensitive system that seems to react to everything on the planet, I also have an addictive personality that cowers at the thought of any sort of withdrawal symptoms.

I take T3 and T4 for my thyroid, which doesn’t function anymore after I had radiation treatment to kill two toxic multinodular goiters a few years ago. I have an albuterol inhaler. I use prescription antihistamine eye drops and nasal spray every day because the optometrist said allergies were causing my gritty eyes and the ENT doc said allergies are causing my bothersome ears. I never had either of these symptoms before this year and I don’t really know if the Rxs are helping, but I keep using them. I have a prescription for an epipen (I’ve been in the emergency room five times for idiopathic anaphylaxis). I take a birth control pill continuously for my severe dysmenorrhea, which has landed me in the emergency room five OTHER times from vasovagal syncope. They call it fainting, I call it flatlining. Awful, terrifying experiences. I don’t need to be on the pill for birth control — it’s only so I don’t get a period and risk the collapse. I’ve had two periods in two years — when I was switching pill brands. Other than that, I take the low-dose naltrexone, of course, I use “Traumaplant” on my neck, curtesy of my Czech bff, and I always carry diphenhydramine and acetaminophen.

One of these days, I will post my back story (not a story about my back, but my history) and tell you about the doctors I’ve seen, the tests I’ve had done, and the horrors of what CFS / ME can be. But not yet… not yet.

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Diet Day 5… I think I’m gonna cave.

So, yesterday, I stuck with the diet after my earwig fiasco and, as usual, lunch and dinner were better: leftover soup and, for dinner, my husband made a lean hamburger with a portobello mushroom “bun”, tomato, sauteed onions and asparagus. Yum! He came through in my time of need!

However, I did email the Good Doctor and told her that I felt like my quality of life (what little there is) was suffering with this diet and could I please just eat oats in the morning? I make my own granola, which I adore, with gluten-free oats, nuts, coconut, cranberries… If I could still have that and oatmeal once in a while, I could really try to get excited about the rest of the diet. Still cut out all dairy, all other grains, all fatty meats, all legumes. It would still be a strict elimination of a lot of the foods I normally eat. And I will cut down on oats. I won’t eat as much as I was… I will still have a smoothie, but I will add some granola on the side to feel full. I will add fruit to my porridge, I can make homemade oat/fruit/nut/seed bars to carry as snacks for low blood sugar (instead of a tin of tuna!). That’s the thing about hypoglycemia ~ I’ve always been told to LIMIT my consumption of fruit and fruit juices because of the high sugar content, but this diet was doing the opposite. I think, if I could eat eggs, it would be a different story. The thing I really need to do ~ and have always needed to do ~ is cut back on sugar and I hope this diet will help.

So, the Good Doctor thought that was a reasonable request and now I’m feeling like a bit of a failure for caving, but this has lightened my mood considerably and maybe, once I’ve eliminated all the other stuff for a while, I will then feel strong enough to stop eating oats, too.

I should have bargained corn back into the diet instead of oats, that way I could have Chex cereal and popcorn and corn tortillas! Doh!

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LDN Day 4… a visit to the Good Doc

Last night, I didn’t feel great: My IBS was acting up, making me feel passy outy. I had a sore throat, chills, was achy, was sure I was getting a cold (but I’m sure I’m getting a cold about once a week when the flu symptoms are acting up). I went in the hot tub to alleviate the chills, then, an hour later, took a shower, then, an hour later, took an epsom salt bath and went to bed. Couldn’t stave off the chills until I made the bath about 110 degrees. I went to bed at 7pm, but didn’t go to sleep until 11pm. I again took the LDN at 9:45pm and still had a bit of a tight chest, but nothing scary. My night was very tossy turny, as usual, and quite sweaty and feverish. The night sweats had completely gone away there for a few weeks, so I need to get back to that. When I sleep without sweats, it changes everything. I “slept” from 11pm-9am. 10 hours, but I only got 7.5 hours sleep. I was awake from 1am-2am, 5am-5:30am, 6am-7am and multiple other times briefly throughout the night (so said my Zeo). It makes me so crazy. I just want 8…9…10 hours of deep, uninterrupted sleep.

This morning I feel okay. Very stiff, but that is usual. My hands aren’t quite as swollen and sore. My eyes are still puffy. I have a sore on my tongue ~ something I’ve never experienced before. Hopefully it will go away if I ignore it.

Maybe you’re reading this for the LDN info and you didn’t sign up to hear the other stuff, so,for you: I feel no different than before I started on LDN 4 days ago (probably worse, actually) and, now, here is some fun other stuff I’m doing to help my symptoms:

My new Good Doctor has me starting a new regimen today. I have to do a 3-day stool collection (that’s probably why my IBS is acting up ~ at the thought of a poop collection!). Today, I am also starting a new diet and going shopping for a bunch of new supplements. The diet is: absolutely no grains of any kind, no dairy, no red meat, minimal amounts of processed foods and sugar. She said, if you can’t grow it, don’t eat it. I already know I’m going to break that rule. I will be strict about no grains (no granola, no rice, no popcorn! Oh my!) and no dairy, but I’m sure I’ll be using ketchup and mayo etc., buying tinned soups… those are things I can’t grow, right? Anyway, I’m trying to figure out what to eat for breakfast and it is stressing me out. Maybe I need to buy a juicer. Gross.

I’ll tell you the supplement details later in case anyone wants to try them.

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My visit to the chronic fatigue clinic.

I wish I could put into words how terrifying the healthcare system here in the United States can be and how inept so many people are in the field and how oblivious, stubborn and condescending so many of the doctors can be. Don’t get me wrong, I have the utmost respect for this field. I am fascinated by much of it. I wanted to be a doctor, then a physician’s assistant (PA), then a registered dietitian (RD), then a registered nurse (RN). I took all the prerequisites, I volunteered at hospitals, I applied to many schools and got in… But then my life took a different road.

I knew, from working in the hospital, how despicable the drug companies are and how backwards the system is, as a whole. They make us sick throughout our lives ~ from the way grocery stores are set up to the advertisements on tv ~ and they keep us sick to profit from the drugs and the huge hospital machines that feed patients through on conveyor belts. I have seen almost twenty different doctors this year ~ usually only once. I saw a rheumatologist for a half hour who charged over $500. When I worked in the hospital, my job was to call drug companies to try to secure discounts for people who were leaving the cardiac ICU. These were generally elderly people with heart conditions and huge medical bills that needed these drugs to survive ~ to stay alive. They weren’t working, obviously, and usually their spouses were retired or deceased. I was meant to provide evidence to the drug companies that these patients warranted discounts. Disgusting. Heart-wrenching. In retrospect, I am happy my career in the healthcare field didn’t work out. Who wants to be around sick people all the time? I’d have to do my job wearing a mask.

Anyway, I need to write a book about all the mistakes that are made when you are a patient – lab mistakes, appointment mistakes, paperwork mistakes – and about all the days that are wasted showering, driving, parking, walking around hospitals, waiting in rooms full of sick people, filling out forms that NO ONE looks at, explaining the same symptoms over and over again, getting ten vials of blood drawn so the same tests can be run again because no matter how many times you sign release forms and call clinics to ask them to fax results to your PCP, it doesn’t happen … WASTED days because no one can appreciate the time and energy and money that disappears with every doctor appointment. WASTED days because you never actually get an answer or even a theory or a call back, you are just told to make another appointment for a follow up. WASTED precious, precious days. When you think you might die, every day becomes precious.

So, let me tell you about my appointment at the chronic fatigue clinic – a specialty clinic at a very large hospital in a very large city. A city ranked 4th in the country for rehabilitation, 6th in the country for endocrinology, 8th in cancer care, 16th in neurology and neurosurgery. Let me tell you what a joke my wasted day was.

Over two months ago, they sent me a very thick booklet, chock full of questions which took me almost two weeks to complete – with many breaks because it was so detailed and tedious. My appointment finally arrives with the clinic that specialises in the condition that I supposedly have. I’m thinking, “Finally I get to talk to experts and get some up-to-the-minute info on cutting edge research and a plan of action for my recovery going forward!” Nope. After waiting half an hour after my appointment time (which isn’t too long by most clinics’ standard wait times), I was given a work up by an RN: blood pressure, allergies, weight etc. She also tested my tear production.

Then a PA asked me all about my symptoms. I was told that this PA, who was very nice, sees every patient first, but, I swear to god, she came across as if she had never encountered anyone with ME/ CFS.

“I don’t know why you don’t wake up refreshed when you do get enough sleep”, she says. Seriously? She refers me to a sleep clinic (they have no appointments for months) and tells me to take epsom salt baths and eat turkey. Great.

“You are tired during the day?”, she asks. Tired? On a bad day? No, I’m not tired. I’m incapacitated. I’m sick, I’m shaky, I’m cement. I’m unable to move or eat or talk. She says, “You can’t eat because you are sick? What foods can’t you eat?” No, I can’t eat because the act of picking up a fork, chewing and swallowing is too much for my body to handle! Because, on those days, I’m trying not to die, so eating isn’t really my priority.

After spending 45 minutes going through my year, my symptoms, my hell, she says quizzically, “Oh, you have muscle pain?” Jesus! Yes! Haven’t you been listening? I am in pain from head to toe, every day, some days better than others. She tells me to try acupuncture, massage, cupping and eating turmeric. Wow, this is the expert in chronic fatigue syndrome?

For my low blood pressure, she tells me repeatedly to eat pizza, chips and pickles. She says, “Bad for us, good for you!” Pizza, chips and pickles? Can’t I just add salt to healthy foods? How about salt on my veggies or salt on my eggs? I have a Rx for pizza??

I tell her I started LDN and she says skeptically, “I used to use naltrexone years ago for drug addicts, but I stopped.”

Then I had a “psychiatric exam”. This was ridiculous. It was a lengthy computer questionnaire that was read to me by someone in a cramped, hot office. Most of the questions I had already answered in the tome that was sent to me to fill out months ago and all of the questions I could have easily completed at home ~ they were yes and no answers. Have you had a period of two weeks or more when you have felt sad, guilty or worthless? This sort of bullshit. It took over an hour and I kept asking her, why couldn’t this have been sent to me to do in advance? And, who on this earth is ever going to look at the answers?! No one.

They took blood to test for vitamin B12 and zinc and something else (useless) and then they made me an appointment with the actual DOCTOR that is in charge at the CFS clinic! So, this was just a fact-gathering appointment and I’m really going to be told nothing? No one is going to ask me what I have been tested for in the past, discuss what happens when you have ME, what they know about this condition, what fits with my symptoms, what doesn’t, what the prognosis is, what treatments and drugs they have found success with… anything??  Nobody is going to say, “I’m so sorry you are going through this and don’t lose hope, we’ve had a lot of success treating people with this condition.” Fucking anything?? Nope. And, the best part? The first appointment with the clinic doctor is in January. FIVE months from now. 14 months since my hell began.

All in all, from the time I took a shower until the time I got home, it was six wasted hours. No hope, no relief, no tests done, no information, no display of expertise, no advice… unless you count massage and turkey. I’m exhausted, frustrated, disgusted… and, unfortunately, pretty hopeless.