I’ve had a couple more TCM appointments. Both were incredibly painful and I got very sick after the last ones. My doctors say that it’s because the treatment is using energy, creating heat, and causing things to work harder. It still amazes me that tiny little needles can have such an effect on my body. At any given moment during my treatment, a certain needle could cause me to sweat profusely, shiver, go numb, tingle, burn, or get very sleepy. I’m also taking a couple herbal concoctions that they gave me. At home, I work on my diet and I exercise. Right now, I’m doing a very simple stretch that is designed to help with a few bulging discs in my spine and neck. There are three stages of this exercise. I used to be a very strong and flexible athlete so when my doctor, Amos, showed me the cartoon, I never imagined it would hurt so much. I am in the beginning stage designed for the elderly and it is still very painful. In this stage, rather than rock back as is shown in the illustration to the right, I simply lie on my back with my knees to my chest and extend and retract my legs. I have only done it a few times because it hurts and I get frustrated. I feel like all of the little soft discs between my bones in my lower back are making contact with the floor and it’s quite painful. My left knee also makes a painful pop each time I retract my legs. Sometimes realizing that I have the body of an eighty year old woman upsets me. However, I have actually gotten up and done “normal people things” two days in a row this week. Thee was a lot of pain and fatigue but, I DID things. Monday, I ran several shopping errands, had breakfast out, and went to my doctor’s appointment. I was very tired and emotional by the time I got to my appointment, and the appointment itself was very painful so after it was over I went home and slept. Which brings up the topic that I have slept two days in a row also! Yesterday, ran to the post office and then to pay a bill. After I came home I set up and tested all of my photography equipment which meant a few hours in the blazing Florida sun bending and stooping and crawling on the ground. I stayed up long enough to eat something, but I fell sound asleep afterwards for nearly ten hours. Lately I’ve been sleeping from the early evening to around 3 am. I would like more conventional sleeping hours but I’m more than happy just to be sleeping on a regular basis. However, last night, when I finished my work I was very tired, in a lot of pain, emotionally exhausted because of those things and also hungry. These scenarios are usually where I get into trouble. When I’m feeling this way, I usually slip and eat something that is convenient and unhealthy. On a normal basis, I try to avoid grease, sugar, pork, red meat, and my favorite, DAIRY. I don’t tell myself that I cannot have them, because this has proven to lead to GIANT binge eating crashes when I’m upset. I allow myself these thing now and then but for the most part, I try to make better choices. Lately, I have slipped a few times and eaten a fast food burger here and there but other than that I’ve done ok. Last night, I was accosted by a PizzaHut commercial in my hour of need. I had a personal pepperoni pizza, an order of breadsticks, and some chocolate smothered breadstick things to dunk in chocolate sauce. There are so many things wrong with that menu I can’t even see straight and BOY am I paying for it this morning. I woke up with a headache, VERY stiff and painful joints, and a horrible taste in my mouth. It’s an odd statement but I feel like I can feel something that doesn’t belong running through my veins. I just feel horrible. The time in the sun and two days of more activity than I can usually handle probably contributed to the problem but I do feel that this morning makes a strong statement about how diet contributes to this condition. I had a similar experience with alcohol a while back. I used to drink wine regularly and occasionally drink enough to be considered drunk. I had a lot of pain back then but it all sort of ran together with every-day pain so I did’t realize the difference. At some point, I got bored with wine and just didn’t have that lifestyle for a while. I didn’t really notice a difference but after a night out with my girlfriends drinking beer I woke up to a morning just like this. It’s not a hangover, I’ve had my share of those and it feels very different. A few weeks later I had a few sugary drinks at an event and got the same effect. Alcohol effects my pain levels significantly. I’ve had to eliminate it from my diet. I’ve found that I can have a small glass or two of a dark red wine now and then and I’m ok. I guess I’m having the same learning experience with food. This blog thing may be completely useless for the most part but I’m learning about this stupid condition and maybe one day It will help me lead a normal life.
Friday March 9th, 2012 after another week of feeling awful… I was spending my time (as I usually do) researching ailments, remedies, and therapies etc. I had come across liver and gallbladder cleansing several times since my acupuncturist told me that she felt like my health problems were emanating from my liver. The symptoms I’ve been having and the information I’ve read over time line up closer than anything else that has been proposed to me in the past.
- Depression, moodiness, melancholy, unhappiness, and a general tense feeling
- nausea, vomiting, epigastric pain, reduced appetite, sour reflux, belching, awareness of pulsating (abdominal aorta) in the epigastric region, a sensation of the Stomach churning
- Alternating Constipation and Diarrhea, irregular elimination
- Irregular menstruation, dysmenorrhea, premenstrual breast tenderness, PMS
- Dysmenorrhea, irregular periods, dark and clotted menstrual blood
Liver Blood Stagnation affects menstruation
- Fixed and stabbing abdominal pain, abdominal masses, fixed, not movable
- Red face and eyes, Irritability, angry outbursts, tinnitus, deafness, temporal headache, or migraine, dizziness
Liver Fire rising to the head
- Bitter taste in the mouth
- Insomnia with dream disturbed sleep
- Dark yellow urine
- Blurred vision and floaters in the eyes
- Numbness of the Limbs, muscular weakness, muscle spasms, cramps
- Pale, withered, and brittle nails
Just to name a few…
I figured since I was going to be stuck in bed all weekend I might as well give it a shot. I read up on several liver cleanses and rather than simply do what I’m told, I’m the kind of girl who likes to analyze things, weigh the options and do what makes the most sense to me, which is admittedly a problem being that I am not at what one might call an objective vantage point. I found what all of the cleanses had in common and began. The basic idea was to evacuate the digestive tract before things could be cleansed from the liver. I started with a nice strong stimulant. I drank a large cup of strong black coffee just to get things moving. I followed up with a large glass of water being that hydration would probably be an issue. Then I drank about eight ounces of organic lemon juice mixed with eight ounces of water and for tablespoons of Epsom salt. Lemon juice has lots of antioxidants, and is supposed to have many cleansing properties while Epsom salt dilates everything in order to better expel waste from the body. (I stayed very close to the bathroom) I followed this with another large glass of water. Next, I ate a huge tablespoon of coconut oil mixed with lots of cinnamon. There was a lot of suggestion to use extra virgin olive oil but after weighing the options I decided that coconut oil sounded better. It is said to have anti-bacterial properties, reduce inflammation, improve digestion, and boost energy among other nice qualities. The coconut oil was tasteless, but the texture made me gag so I chased the second half of the spoonful with apple sauce because by this time, I was starving anyway. The cinnamon was suggested by my TCM doctor to help reduce blood stagnation and arthritis pain. After this interesting little treat, I proceeded to attempt to drink a large glass of organic cranberry juice. I would like to interject, at this point, that this is a disgusting substance. I had more trouble choking this juice down than anything but there is a lot of research on its cleansing properties. Sometimes I am of the mind that the worse something tastes, the better it is for you… so I did the best I could. At this point, I can’t even begin to describe the things that are being expelled from my body. I have a terrible migraine, and I’m pouring sweat and running a low grade fever. After several hours spent in the bathroom my body began to calm down and I fell asleep. I still felt pretty unwell when I woke up but I was excited that it was over. I kept downing tons of water and proceeded to eat small amounts of whole food. I quickly realized that EVERYTHING I tried to eat, gave me a massive headache and caused my fever to spike. I was exhausted and miserable for hours after eating no matter what I took in. I became an emotional wreck. I was always anxious, upset, sad, easily moved to tears. I was losing my mind. After a couple days of this misery I stopped at a taco bell, exhausted, and emotional. I figured that if I was going to be sick, I was going to eat something that tasted good. I ate a “Doritos Locos Taco Supreme” with fire sauce. I’m embarrassed to say that it tasted AMAZING… I could have died happy in that moment. I later began to realize that I did not have a headache. I didn’t have a fever. I felt fine. HOW IS THAT FAIR? I feel like my body has built up anti-bodies against healthy food. I drank more cranberry juice later to test the theory. FEVER AND MIGRAINE. I ate some junk food the next day… just fine. Grapefruit juice? FEVER AND MIGRAINE. If I was not already emotional enough I’m faced with the fact that I really try to do what I can to help this situation, and whatever I try only makes things worse. I seem to tolerate eating tuna ok without the fever and headache… although I am sneaking chocolates to help combat my extreme emotions. I’m still in tears and anxiety ridden all the time. I have an appointment with my TCM doctor on Monday. My hips are popping out of place again so I needed to see her anyway. As usual, I’m hoping for a miracle.
After my second attempt at Bikram yoga, on monday… I have spent every day since completely bed ridden. I was given a tongue lashing by my former boss (one who fired me for being too sick to perform my job tasks) for even attempting such a class and given strict instruction to seek out a local doctor who specializes in MS for help. The thing is, I’ve been pleading with western medicine specialists for some kind of insight or help with this condition for eleven years now with NO result. I continue to get sicker and less functional and they continue give me the following answers:
- I don’t know what’s wrong with you, Go and see this specialist
- You’re depressed, crazy, or some other form of this is all in your head
- You’re a drug seeking addict
- You have fibromyalgia, there is no test, cure, or working treatment – i.e. life sucks then ya die
- I don’t believe in fibromyalgia, but I don’t know what’s wrong with you
- It’s probably M.S. but since I can’t prove it, I can’t help you.
Such statements have inspired me to start seeking answers from eastern medicine. The thoughts I’ve gotten from these doctors have made a lot of sense, but thus far their treatments have proved to be no more helpful than their American colleagues. To be fair… Western medicine has had eleven years to fail me and leaf me defeated and somewhat heart broken, while the eastern world has only had about six months.
It suffices to say that during this week in bed I have been very depressed, anxious, and angry. I have gone back and forth between a state of denial and a state of defeat. Sometimes I’m still hopeful that one day I’ll stumble upon a working diagnosis and get better. I’ll have the chance to live like a normal young adult and hold a job, maintain friendships, and leave my home on a regular basis. But more and more I have had to face the reality that chances are I will never get better. I’m having to take a long hard look at the reality of a life with this illness. What will life look like if I can never hold a normal job again? How will I provide for myself if I can’t? Who in their right mind would maintain a friendship with someone who turns into a recluse for weeks at a time and cannot and will not be available to them? Who on earth would seek a relationship with someone who can’t provide for themselves, maintain a home, or do the things that make life enjoyable? There is no question to ask about children. I cannot pick up and care for a baby. I cannot chase a small child. I cannot provide structure to a teenager… in this state, I cannot be a parent. I have tried, during this week to adjust my expectations of life, but I have no realistic positive ideas about what life could be like for someone who is completely disabled. Yes; I’ve thrown myself a little pity party in this time, but usually I can analyze my situation, pull up my bootstraps and keep going. I’m struggling to do that right now. At this juncture, I am not capable of attaining anything I’ve ever wanted out of life. I realize that in these situations it is customary to get new dreams… but for now, I’m at a loss.
Today at 7:30a I attended my first Bikram Yoga class. I had read much research to the affect that yoga can help relieve pain and help the general health of one’s body. My acupuncturist believes that the root of my health issues is liver related and has to do with stagnant dirty water in my system. One suggestion she has is to cause profuse sweating in order to purge the water from my body. This is said to be one of the health benefits of Bikram or “Hot Yoga”. I couldn’t sleep and some bizarre notion possessed me to think that taking the class might pump me full of the energy I would need to attend my sewing class, finish a costume I was working on, and then go to a birthday party for a friend that I’d been planning on attending for quite some time. Maintaining friendships when you’re 26 and dealing with an illness is quite difficult. Most of the time you do not feel well enough to perform the activities that others your age enjoy. I don’t have near the physical stamina to simply keep up the pace they do let alone actually enjoy the activities they enjoy. Their constant cheeriness isn’t much help either. After living every day for eleven years with an illness, you get quite tired of plastering on a fake smile just to get through the small talk at these events, let alone take part in the activities. Maybe someone stronger than me could manage these things without wanting to isolate themselves from these people who couldn’t possibly understand, but for me it is a constant battle. Friendships for me are like marathons… as you can imagine, I’m not much of a runner. That said, I showed up to my first class, running ever so slightly late, as usual. I spoke with the “squirrel on crack-like” instructor for a few minutes and then entered the studio to be greeted by the 105+ degree heat and an apology from the instructor that for the first class of the day the heat and humidity aren’t as high as they are for the other classes and that the room will warm up eventually. I managed to struggle through the first thirty minutes of practices, finding that the former athlete in me still drove me to push harder than my body was capable of and promptly dashed out of the room to vomit. Actually, I hadn’t eaten in quite a while (lack of appetite is a side-effect of one of my meds) so I simply dry heaved for a long while. I tried to re-enter the class and left again to vomit after only a few minutes. Some of the staff tried to encourage me to complete the class as I awkwardly stammered through a half-hearted explanation that I didn’t owe them. I spent the rest of the class vomiting and eventually found my sea-legs and left. I got to my quilting class just a tiny bit late and drenched in sweat. I was in pain, dizzy, and weak and I did not manage to complete my class or make it to the birthday party. I spent all of that day and the next in the bed. My quilting instructor, who has MS, which is very similar to the kinds of issues I have, strongly suggested after spending time with me that I NEVER take the class again and that it would likely make my condition worse. I feel as though I’ve tried absolutely everything else and it couldn’t get much worse. I’ve resolved to try the class a few more times in hopes that the adage that says things get worse before they get better might be true.
I’ve made a few attempts at blogging before only to realize that I really don’t have much of a unique prospective on anything. At least not anything I would imagine someone wanting to read about. I’m still not sure I do. However, I’m a twenty-six year old female who has much more in common with the retirement set than people my own age. I’m disabled. I have some mysterious illness that causes my body to feel like I’m ninety. I spend much of my time in doctors’ offices’ waiting rooms hanging out with old guys wearing veterans caps, swapping war stories about our arthritis and sciatica. Other times I’m researching home-remedies and alternative therapies to try and increase my quality of life. This illness has resulted in the loss of three jobs now due to my inability to safely perform the functions of a normal job. The other percentage of my time is spent trying to learn a trade that I feel I may be able to perform under the conditions of this disease. I love to use my creative abilities to sew, come up with little projects and ideas, and to edit digital images. I’m hoping to “adjust my expectations” and create a life with the circumstances I’ve been given.