Tag Archives: acupuncture

by

Sick, month 11

E., that last post was for you. A tribute to our youth that has taken on a different meaning now.

I spent the weekend in bed for the most part. Today starts a fortnight of medical appointments every single week day. I’m worried about this. I should probably reschedule some, but they’re all ones I’ve been waiting for: overnight sleep study, neurologist, the Good Doctor follow up, a ten-week group therapy class that allows me to keep seeing my therapist for a little while longer for a much lower price tag, albeit in a group. Eek. I’m not a big public sharer, believe it or not, although maybe it’ll be okay because I am an open book, especially after this illness: I have never cared less what people think of what I say or how I look. That doesn’t mean I don’t care if I offend people or I don’t care if I smell, rather, I have no problem wearing no make-up, crying snottily, and talking about my bowel issues and crushing grief. Why disguise? What is there to hide?

Physically, I think I am worse than I’ve been since I left work. The pain is not as bad as it was in the days after my Big Day Out on the 13th, but, when the debilitating pain eases up, the regular pain, aches, exhaustion and flu-like symptoms are waiting underneath. As I mentioned before, I’ve only left the house 3 times in 11 days (for doc appointments). I haven’t gone to the grocery store, the drug store, the dog park ~ I haven’t done anything and I usually would be feeling a lot better by now. I feel faint, I am clammy, I keep getting a pitter-pattery heart and tight breathing, I am absolutely exhausted, I have a bad headache (this morning, there is an expanding and contracting ice pick in the back of my skull on the left), my muscles are stiff (I’m trying to come up with a better description ~ I walk and bend like the Tin Man, like I have immobile metal braces attached to all limbs), both hands and all fingers are in pain (haven’t had that in a while), and a new one: my leg muscles ACHE. They feel like they need to be moved and stretched, which is probably exactly what it is, but, it hurts. I lay in bed jiggling them, tensing them, punching them, trying to get the throb to ease up. And my brain is mush. I’m excited that I can type this morning because last night I could barely form sentences and not feeling smart is scary. Actually, the worst is not feeling quick anymore. The thing I valued most about my brain was how fast I could interpret, anticipate, respond, reason, argue, predict, accomplish… and I could tackle 10 things at a time. The ultimate multitasker. Gone.

Medicinally, I am taking a quarter of a Norco before bed, as well as my thyroid hormones, antihistamine nasal spray, albuterol inhaler, birth control pill and all the supplements and IBS-helping products. That’s it. I want to start something new this week ~ antibiotics or Lyrica or the Chinese herbs or something. I have an electric blanket on my bed, have changed to flannel sheets (heaven) and I’m trying a sun light box thing, which “is sure to deliver a therapeutic sense of well-being in any setting”, says the leaflet.

Emotionally, as I’ve said, I’m not in a great place. When you really start researching M.E., you realise that people don’t recover very often… hardly ever. So, I’m in this terrible shock-plan-grief cycle.

This can’t be happening. Okay, I’ll try X/Y/Z treatment. But, why? I’m just going to get X/Y/Z side effect.

I can’t believe I’m getting worse, not better. Okay, meditate, stay positive, have hope, keep going. But, there was so much I didn’t do, there was so much I didn’t try, there was so much I didn’t accomplish… Now, it’s all gone.

Wow, based on case studies, this can actually get much worse. Okay, I will concentrate on constant rest, every day. What’s the point? I’ll never have a life back, I’ll never have my health back, I’ll never have happiness.

My husband said, “You had the same problem riding a motorbike. You have to look where you want to go and lean into the curve with your eyes ahead of you. You have to focus on the point you want to get to.” I never looked at the end point; I was always afraid of the lean. I was always looking at where I was ~ scanning the ground for danger, watching my speed, making sure I hadn’t left my turn signal on ~ and not where I was going. Which is ironic since I know I am a future thinker and a constant planner.

For example, I have planned the documentary that I am going to make about M.E. I am going to travel this world and interview patients, doctors, people who have recovered, caregivers. It’s going to be informative and moving and it’s going to make some noise.

I have also planned the business I am going to start to bring services to home-bound patients. It’ll encompass everything: walk/wash/groom/play with your dog, wash your dishes, change your bed clothes and do your laundry, clean your home, mow your grass, cut your hair, take care of your feet, talk to you, listen to you, help with your meds, help you fill out paperwork, help you organise your files/calendar/appointments, bring a mobile library of movies, music and books from which you can borrow for free … I will have subcontractors that bring their services to your home. For example, landscapers, vets, acupuncturists, massage therapists, physical therapists, reiki practitioners, reflexologists, guided meditation helpers… It’s going to be epic and so fulfilling.

I have also planned to get a medical degree and go into research on M.E. Or, even better, doctor education. When I have some letters after my name, I will find a platform in the medical community and make some noise.

I have also planned to become a yoga teacher, a salsa dancer, a chef, a marathon runner, a gymnast, a horse rider, a dog trainer and, of course, a writer. Although, maybe, after years of this, I’ll be like Laura Hillenbrand and just not want to go there ~ Not want to write about M.E./C.F.S. because I live it.

Hope is hurting me, but only because I so desperately want to conquer the world. I am grateful for every minute of every day that my legs hold me up and my brain still works.

by

Dark Yin

I have another good doctor. Well, not actually a doctor ~ a master. The acupuncturist has a Master’s Degree in Acupuncture and Oriental Medicine and he was wonderful. As soon as I finished recounting my story, he said, “You have a bug”… which I think I needed to hear. I know I do and, interestingly, this is precisely the first thing my wise-doctor father said when he was here: “You’ve got a bug.”

Even if there was 100% concrete lab proof that I have M.E., most cases begin with a sickness, so must patients probably are infected with a bug. The Good Master acupuncturist said, “I have absolutely no doubt that something has taken up residence in you, but we don’t know if it’s bacterial, viral or parasitic. There are bugs we can find and treat, there are bugs we can find but usually wouldn’t test for, and there are bugs that we don’t have the ability to test for, so we’d never find them. In Chinese medicine, we treat for all bugs rather than looking for the particular culprit which could be hidden deep in the body.” They call the bad stuff that you can’t see or find “Dark Yin” and the problem it has caused with me is called “Gu Syndrome”.

Now, normally my ears slam shut when people talk about Chinese herbs or Oriental medicine. Like I said, I have always been a traditional Western medicine type of lady, but, if I’ve learned nothing else this year, I’ve learned that I don’t know shit. Who am I to say that this or that is dangerous? Who am I to say that this or that will work or not work? None of the doctors I have seen has found anything wrong with me yet and none of them has any advice except sleeping pills and anti-anxiety meds. Who am I to take their tests, opinions and traditions as the only options?

I did tell him No. Way. when it came to taking the Chinese herbs. He asked me to research it and think about it. My husband says, “Of course you should try it!” Those of you dealing with this disease know that doctors give you no answers and you would do anything to get better, so I want to put this information out there for you to consider. I am going to upload a photo of the herbal remedy info sheet the Good Master gave me. Here’s the first line:

“A unique remedy for the important clinical phenomenon of Abdominal Gu Syndrome: difficult and treatment-resistant diseases (such as IBS, chronic fatigue, fibromyalgia) caused by chronic, often undiagnosable parasitic infections…”

Although I’ve gone over the genesis of my illness in my head a million times, our conversation today helped me see it more clearly and feel more hopeful. He said, “Can you pin-point the day you got sick?” And I CAN. That’s why I think the Bad Bug scenario rings true. I was on vacation in Virginia, when, very suddenly, a got diarrhea. Believe it or not, I’d never in 38 years had the traveler’s diarrhea that people talk about. I was not nauseous, I did not vomit, just diarrhea that started suddenly and did not stop for a few days. I couldn’t eat ~ not really because of nausea, I just could not eat. I stared at an egg, willing myself to take a bite and I couldn’t. It scared me, brought me to tears ~ that had never happened, either. I thought everything resolved and then, three months later, I was writing Christmas cards and something started to happen to my body. I thought, Uhoh, I’m getting really sick. I moved to the couch and fell asleep for an hour, then, I woke up and told my husband that something was very wrong and I was worried that I might have to go to the hospital. It was the first cycle of chills and sweats that would continue for 9 months. “Chills and sweats”, of course, is a description that does not do it justice. For a better picture, read my diary excerpt:

https://ldndiary.wordpress.com/2012/08/31/how-my-cfs-me-began-an-excerpt-from-my-diary/

Now I wonder, did the Dark Yin take hold of me in Virginia, make me sick for 3 or 4 days, burrow deep and incubate for another 2.5 months and then start making me very sick? It was cyclical; it seemed like a parasitic life cycle, that’s why malaria fit so well. But my body couldn’t fend it off for whatever reason.

Feel free to not read past here. Below is my own investigative work for my own records. Believe it or not, I have never looked at the timeline.

During this whole time between June and December of last year, I was seeing a sports medicine doctor, a physical therapist and a massage therapist for my recurring, crippling neck injury. I also had to get two crowns over the course of these months, requiring multiple visits to the dentist. Also, when I look at my diary, I worked SO much. Every day was so busy and stressful and hectic. I didn’t take any time off whatsoever when I was sick ~ only for my trips to Ireland and Virginia.

June 17th-27th: In Dublin. I had a swollen tongue on 24th and 25th, took benadryls. I had a chilled/syncope/collapsy/low BP episode on the 26th, but didn’t go to the hospital.

Last week in June: continued to have swollen tongue.

July 11th: Saw Allergist who diagnosed me with autoimmune urticaria and angioedema and told me to take Zyrtec.

July 15th-26th: Acute bronchitis: short of breath, congestion, body aches, cough, mucous, sinus pressure.

July 22nd-24th: My Father’s visit.

August 6th: To Virgina.

August 9th-10th: Sick with diarrhea.

August 11th: Flew home early.

August 17th-21st: Drove to Boise, ID (with husband and dogs) for work.

October 9th-10th: Work retreat.

October 19th: Flu shot.

November 3rd/4th: Pretty sure I was sick with chills and sweats during this time.

November 17th-20th: Pretty sure I was sick with chills and sweats during this time.

November 22nd: Saw endocrinologist to talk about symptoms.

December 15th: Saw PCP to talk about symptoms and get malaria test.

December 20th-22nd: VERY sick.

December 27th: Was told malaria test was positive, but had two subsequent tests that were negative.

December 30th-January 1st, 2012: VERY sick. My mother’s visit.

January 3rd-10th: No appetite, severe chills, heart races, breathless just from standing up. Sweats every night, can’t eat, weak, lost 5 lbs, feel like I’m going to die.

I stuck out work for four more months before I had to leave my job to try to get better. The rest is history. The Dark Yin is still my dark passenger.