Myofascial Release As Possible Treatment for Fibromyalgia

Since my diagnosis of fibromyalgia in 2008, I have tried several rounds of physical therapy, several rounds of pelvic floor physical therapy, every level of massage from light to deep tissue, light exercise to weight training. I had also been feeling good despite the pain and decided to take it up a notch. I started weight training in August 2014 because a sales person convinced me that stronger muscles would pull out the tight spots.

Except that my tight spots are not in the muscle, they are in the fascia. The fascia is a thin sheath of fibrous tissue that is found throughout your entire body. I have tight spots in my fascia in every section of my body from my head to my toe. I am in a considerable amount of pain. After a year of weight training, I ended up not being in less pain, but more. I had to quit when I pulled a back muscle that left me in tears and taking medication. Between the meds & massage, it worked its way out only to resurface when I pulled a muscle while laying on my side in bed.

The other day, I happened to see an ad in a newspaper for a physical therapy place that focused strictly on releasing myofascial pain with a method taught by John F. Barnes, PT. Unlike other PT I’ve had, Barnes’ system apparently uses gentle pressure held for much longer periods in order to completely release the spots. I have so many of them I think it will take someone a year to work them all out.

To some degree, I have given up. I’ve been on a couple of kinds of pain medication for years, but they’ve been working less lately. I either have to find another way or I have to change or go up on my pain meds. I don’t really want that. I want the pain gone and I want my life back! I don’t have a life right now. I can’t work because I can’t sleep well enough to be well rested. I’ve worked with this pain, and I was chronically and terribly exhausted all the time. It’s not a life, and it’s not fair to my employers because I’m limited in terms of energy and patience. I’m still often tired, but I have few stresses in my life. My biggest ones are my mother when she falls in or is in pain and the pain I live with.

Even though I felt hopeless, I sent out a couple of emails to physical therapists trained by John F. Barnes in his techniques. If I can be relieved of this pain, I can only imagine what it would feel like: like I’m floating on a cloud instead of the group. Please wish me luck!

Brief Fibromyalgia Health Update

Some of you know that I have fibromyalgia. It’s not a disease, but a syndrome of problems that results in, among other things, chronic pain, chronic fatigue, and poor sleep. Towards the end of the last year, I began seeing an integrative medicine doctor in the city who prescribed me some supplements.

When I saw him in March, I said I did not think a few supplements were helping so I was stopping them. A month later, I was exhausted again and went back on. Lo and behold, my energy level rebounded in days. I had a follow up recently and told him about this. I also said that what I really wanted to see was an improvement in this chronic pain that I live with.

The pain is both chronic and changes little. Since summer began in earnest with high humidity and heat, I have been feeling worse. Warm and drier is good; hot and humid not so much, unless I’m at the beach. Bitter cold is no good, either. Being warm dressed on a semi-cold day feels nice. And what I mean by nice is a type of weather pattern that doesn’t somehow make my pain worse.

About 10 days ago, I bought a new powder multivitamin that an online integrative doctor sells. My real life integrative doc is friends with online doctor, and I have bought supplements from online doctor’s web site before. I had just finished a packet of multivitamins, but didn’t want to continue doing that. So I bought this powder that tastes very much like Tang.

And ever since I have been taking this multivitamin in my water every morning, I have had a lot more energy throughout the day. Even better than that, I have been able to tackle tasks around the house with ease. When I say ease, I mean that I simply do them after I decide to do them. When you live with pain and fatigue, sometimes the things you want to do don’t get any farther than ricocheting around your brain. After a while, you feel guilty because there are things you should be doing without an ounce of motivation to do them. The vitamins have brought me energy and removed the procrastination. Somehow.

Now the bigger mountain is the one built on pain. My doc suggested I increase one of my supplements called Ribose, which he has claimed has worked to help eliminate persist pain in his other fibromyalgia patients. I will let you know one way or the other. I can tell you know that, if the Ribose does work to eventually eliminate my pain, you will most likely found out when you hear my cry for joy instead of on this blog.

Here’s to hoping!

The Sickness of Anticipation

This morning, I woke up knowing that today would be the first of two days of prep for my colonoscopy on Wednesday. For two days, I will be drinking. A lot. And not the kind of drinking that I want to be doing.

The only food-like substance that will pass these lips is jello. Also in my armory are chicken broth, apple and orange juices, water, coffee, tea, sugar, honey, Gatorade, and Life Savers. Not that I plan on eating the sugar. I think I’ve gotten that covered elsewhere.

I put in call to clarify today’s instructions and make sure I hadn’t screwed things up by taking Pepto last night or Vitamin E on Friday. Once I got the go ahead, I went shopping with my honey to pick up the magnesium citrate, Miralax, and Ducolax that I will need. Oh and a package of baby wipes and A&D ointment. This is gonna be some party.

We got home from shopping with the foodstuffs and colonoscopy prep materials, and I feel like I’ve been gathering the supplies together to make a home-made bomb that I will soon be strapping on for the least fun ride I could possibly hope to be on.

For lunch, I decide to have broth and try out the “island pineapple” jello. I haven’t made jello since I was a child. After I learned about vegetarianism, the thought of gelatin freaked me out. Not even Bill Cosby could tempt me to eat that stuff again. Back then, Bill was Mr. Cliff Huxtable, the father of your friend whom you could trust.

When I opened the package, the sugary pineapple smell surprised me with its intensity. In short order, I had a cup of boiling water stirred in with the gelatin after which I added a cup of cold water and stuck it in the fridge. Mmmm…. jello dinner.

At around 3:15pm, I took the magnesium citrate prep that I had chilled and poured it into a tom collins glass. Over 30 minutes, I drank the so-tart-my-eyes-are-tearing grape liquid. Artificial, overly sweet grapiness at its best. Or worst. Either way. The grape is so intense I feel like it’s left it’s DNA print on my tongue.

This I followed with 2 glasses of water, a glass of iced coffee, and 2 glasses of apple juice. Grape taste DNA refuses to be evicted. Afterwards, I feel bloated like a dead whale’s body decaying on the beach. Now, about four hours later, I am waiting for the magnesium citrate prep to take effect. I fear that I will not be going to sleep for a while once things “kick in.”

The effectiveness of the magnesium citrate prep feels like an IED that I’ve detonated, but one that is taking a really long time to go off. The bloating wears off and a rumbling works its way through my colon. I estimate that the prep has made its way into my descending colon. If I’m right, I’ll be forced to spend time in the bathroom right about when I would normally fall asleep and for at least a couple of hours.

But who knows? My body is notoriously slow at moving things through. My husband Mark and I could eat the same spicy meal, and, whereas he’s on the toilet within 4-6 hours expelling the spice, I don’t have to visit the toilet gods until the next day.

Maybe the toilet gods will take pity on me, let me get to sleep tonight, and then sleep through the night. Maybe my alarm clock will be my body propelling out of bed, mostly asleep, and into the bathroom as a rousing antidote to my phone alarm clock.

Those options both sound so exciting that I simply do not know which one I’d rather choose! (And if you don’t read that dripping heavily with sarcasm, there is no hope for you).

Illness, Alienation, and PTSD – Part 6

Read Part I, Part 2, Part 3, Part 4, and Part 5

The surgery in 1992 that I had for an intestinal blockage was the last of my surgeries for intestinal blockages, but not the last of my intestine and stomach related issues. Since then, I seem to have experienced periods where my stomach seemed to be having intense gas pains that worsened in intensity. When that happens, I follow this protocol:

  1. Take GasX. If it’s actually gas, GasX works like a dream. Tums don’t cut it.
  2. Take Pepto Bismol. This helps with any stomach cramping. If one dose is not enough, repeat one hour later.
  3. In the meantime, get my heating pad out and lay it over my stomach.

Almost every time in the intervening 23 years, this has worked. Mark and I vaguely remember me going to the ER once, possibly in my late 20’s, for stomach pain that would not go away. But nothing serious was discovered because I did not have any further intubations with an NG tube nor any blockages discovered.

So it was with surprise when, on March 1st, I followed my protocol to find that it did not work at all. By the time 9pm came around, an intense pain gripped the right side of my abdomen. It seemed to start near my appendectomy surgical scar and go up to right under my rib cage. When it continued unabated for 30 minutes and I was crying out in pain, I asked Mark to call an ambulance.

I had tried to go to the bedroom, but the pain caused me to curl up in a ball. Any attempts to move my right leg away from my abdomen caused more pain. I was unable to sit straight up, to walk, or to do anything except lay there. I asked Mark to go let my mother know that I was having stomach pains and that we were going to call an ambulance. I was sweating because the only other time I ever felt pain like that was when I had intestinal blockages. I prepared myself for the worst.

I felt terrible for my mother to have be in the same room with me while I was crying out in pain. The pain was at a 10 level, and I could not keep it inside, even if I wanted to (and I wanted to). I knew it was just hitting her in the gut with helplessness and shared empathetic pains, so I told her to go downstairs so that she wouldn’t have to listen to me. She refused to leave until the EMTs were taking me to the hospital.

The one thing about my town that rocks is the speed of the EMTs, police, and fire department when someone is in need of an ambulance. We waited only a few minutes before someone was knocking on our door. I needed help just to get up off the floor and sit on the ottoman. To get me out of the apartment, they put me into a chair and then slid me onto a gurney to take me to Winthrop.

By the time I was being processed in the ER, my stomach started to feel a little better. They gave me some fluids while they had me drink contrast for a CT scan. The results came back showing that no blockages, but that there seemed to be a change in caliber to the intestinal in the mid transverse colon and constipation throughout the sigmoid, ascending colon, and cecum.

I found this odd, but I chalked it up to the smaller opening that they saw in the colon. Even though I had already passed soft stools that day, I felt a kind of straining that I can only chalk up to not having enough room for the intestines to breathe. It certainly wasn’t traditional constipation, and, after the enema, the attending nurse told me that it was odd that there were no hard pieces. I didn’t think it was odd if things could not move through easily enough on their own. I was relieved not to be in pain anymore and to be able to go home.

I was released with instructions to follow up with my primary care, take Miralax for the constipation, and go for a colonoscopy. I met with primary care and her GI specialist that week, but I did not care for his bedside manner. I also did not want to go to a Queens endoscopy center. I wanted to go to a hospital that I trusted.

That weekend, I talked it over with my sister M. She helped me research GI specialists and even came over to the house to visit and to work with me. The next day, I made the appointment with the GI for the following Monday. Once that was done, my sister M then helped me research for a new Winthrop-affiliated primary care doctor. I made an appointment with the new primary care the following Friday. She spent so much time with me, helping me research and select two new doctors, that I bought her a gift that will soon be delivered.

After my release from the ER, I continued to feel uncomfortable. I could feel and hear stool moving through my midtranverse colon. It sounded like things were being squeezed through a smaller opening. I ate small meals and stuck to a low residue diet, but even doing that made my stomach feel hard and uncomfortable. My stomach felt full all day long. I had periodic bouts of pain right under my ribcage. I decided to start taking the Miralax every day and eat a low residue diet. Things went on in this manner for almost two weeks until suddently I could eat normally with no discomfort or full stomach.

I’m still taking Miralax every day, but went down to half a dose a day because stools too loose are a problem in their own right. I’m also having weird twinges and bouts of pain in the area under my ribcage. But now I have to wait. After the appointment with the GI doc, I went to check out and make an appointment for the colonoscopy.

The scheduler first offered me the date of May 12th. May! I said to her, “I have to wait two months to get a colonoscopy? That’s insane!” She then looked again and offered me an April 29th date, which I took. Afterwards, I said to my sister M, “Well, now I know that no one ever has an emergency colonoscopy. You have to wait for that sucker!”

One positive that thing has occurred is that, for whatever reason, going to the ER motivated me a bit to move forward on my writing goals. It felt like a great stone had been moved from a closed entrance, allowing light to enter for the first time. Usually, an ER trip with significant pain like this would have me refusing to move forward on things that are anxiety-producing for me. Work is one of those things that causes a lot of hand-wringing on my part, but that’s a topic for a different series of posts. However, I was able to make a few changes.

I printed out an accountability calendar created by Carrie Brummer, creator and owner of ArtistThink.com. Carrie is an art educator and tries, through her site, articles, and free online classes, to encourage people to explore their creativity in different ways. I printed the calendar out, hung it up on my wall, picked and start date and began writing.and decided that I would start using it mark off the writing that I did. Every day. Across the top I wrote, “Don’t break the chain.” Jerry Seinfeld once told an aspiring comic to write every day and to not “break the chain.” Nothing feels better than checking off that little box and knowing that I am fulfilling my commitment to myself and my writing goals every day, even if it’s just a little bit.

Today is day 13 of that unbroken chain. As a result of recommitting myself to daily writing, I restarted the morning writing exercise that I learned from Julia Cameron’s book The Artist’s Way. She recommends writing three, 8.5″x11″ pages of freehand writing every morning. I found the three page minimum difficult when I tried it last year, so I decided to make it easy on myself and make it a one-page minimum. Yesterday, after spending a working day’s worth of time researching rheumatology docs for my mom, taking her to the appointment, helping her get xrays, bringing her home, filling her RX, getting milk, eating dinner, and coming home, I was exhausted. I could only manage that one page. I was surprised at the depth of what I wrote because, if you had asked me, I would have told you that any thinking at all would be out of the question.

On all the other days, I’ve managed to write that one-page minimum plus more. Sometimes it’s writing for my blog post. Sometimes it’s writing for my stories. Sometimes it’s writing down ideas that I have. WHATEVER it is, I am committed to writing and keeping the writing thing going. When I did that last year, I was so much happier. One day this week, I realized that I laughed and smiled more than I had been lately. I chalk it up to the writing practice. I feel productive.

My trip to the ER could have been paralyzing. For the first time ever, it wasn’t.

Illness, Alienation, and PTSD – Part 5

Read Part I, Part 2, Part 3, and Part 4

The best part of the summer before my junior year in college was getting to spend time at my brother-in-law’s summer house out East on Long Island. The cottage was your typical summer cottage. It had no internal plumbing; you took showers and went to the bathroom outside. Situated near a cliff, you had to climb down a ladder to get to the beach. The waves lapped a dozen yards away. I remember sitting on the beach, enjoying the warm weather, and spending time with my family shortly before I had to go back up to college in Massachusetts.

I did not return at the end of August 1991 as was planned because I was taken to the hospital with stomach pains that turned out to be another intestinal blockage. I remember the doctors saying that they did not want to operate on me if at all possible because it had only been 10 months since my last surgery. Instead, they inserted a nasal-gastrointestinal tube (NG) to see if it could relieve the pressure and, by proxy, the blockage. The NG tube did relieve the pressure and the blockage, and I was able to leave after proving that I could eat and pass things along my intestinal tract.

My joy at avoiding surgery was short-lived, however, and I was taken back to the hospital with stomach pains within a couple of days of going home. Again, the doctors did not want to operate, but they did insert the NG tube. Again, the pressure was relieved, the blockage unwound itself, and I was able to go home after proving I could eat and pass things along. Three weeks after my anticipated return date, I was able to go back to school. I had signed a lease with some college friends starting the prior July, and I returned to my apartment.

I wish I could say that this was the last of my intestinal blockage saga, but it was not to be. Six months later in March 1992, I went to the hospital with stomach pains. The pain of your intestines twisting around themselves is a pain unlike no other. I would never wish this on anyone, not even the worst of the worst. The surgeon who operated on me told me that the kind of pain I experienced is even worse than the pain of childbirth. I was also the youngest patient in the hospital with as many surgeries as I’d had by my age.

My sister M who used to cut hair got me the name of the surgeon through one of her clients, a doctor. The surgeon was the Chief of Surgery at Cambridge Hospital and performed surgery at Mt. Auburn Hospital. Although he has long since moved away, I still remember his cutting humor, his straight talk, and his lack of reassurance. He told me that, even if the surgery was successful, there was no way to guarantee that having a blockage would not happen again. It could happen the next day, in 20 years, or never. I was a wreck. How was I supposed to live my life this way? At any given time, what I had worked for could be taken away, and I could back in the hospital with another blockage and another surgery that would only leave adhesions, ensuring future problems. One of these days, someone is going to find a way to eliminate adhesions. When they do, I will tithe half of my income to them. HALF.

This surgery, like the one in 1990, resulted in my staying in the hospital for approximately three weeks. In addition to the NG tube, Dr. F wanted to perform a certain procedure wherein a weighted balloon tied onto the end of a tube was inserted up through the nose into the stomach. The balloon and tube were to pass through my intestines for a designated number of days until it had gone far enough into my body. During the surgery, Dr. F would arrange my intestines in such a way to minimize adhesions. This all supposedly would help with that since it seemed that adhesions from prior intestinal surgeries seems to the main cause of future intestinal blockages. After the surgery, the tube was cut at the very back of my mouth as far as they could go, and the tube was allowed to pass through in the usual way. I can honestly say that it is a very weird experience to go to the bathroom one day and have to pull a balloon and tube out of your ass.

In some ways, I was much better off than when I left the hospital in 1990. I did not have raging infections; my length of stay was due to the added procedure of the balloon tube that needed time to move through my system. In some ways, I was in a bad place. In my first semester at college, I went from 123 lbs. to 113 lbs. because the Aramark dining hall food was both disgusting and often improperly cooked. By the end of my first semester, I would only eat salad for dinner and then have a shake later that night when I was studying. By the time I was in the hospital this time in 1992, I continue losing weight. They inserted a feeding tube into my neck so that I would at least get nutrition. That didn’t stave off the weight loss, however. By the time I left, I was 100 lbs. I have never looked so ill. My thighs were barely much thicker than my thighs. I once again had to withdraw from college because there was no way I was going to be able to make up three missed weeks of school.

Earlier this year when thyroid medication helped me drop about 5 lbs. quickly, I began to panic. I called the prescribing doctor and told him I was worried about the rapid weight loss. He laughed at me and told me I was the first patient to ever call him to complain. I explained that I was not complaining, but that the rapid weight loss triggered memories of when I was in the hospital. I said, “What do I do? Eat more?”. He laughed and said yes, I can eat more.

After getting off the phone with him, I realized that I have had a fear of weighing too little because of these hospital experiences. I psychologically need to have some meat on me. At this weight of around 120 lbs., any added weight can be seen in the belly area – and I am totally fine with that. But having a ultra-lean body doesn’t really work with my psyche because I want to make sure I have some weight to fall back on if I ever get sick and can’t eat, which is what happened earlier this month. But I’ll talk about that in another post.

~~ End of Part 5 ~~

Illness, Alienation, and PTSD – Part 4

Read Part I, Part 2, and Part 3.

One Friday night near the end of October 1990, I treated my sophomore roomate Pam to dinner for her birthday. We went to a Thai restaurant down the street from our dorm. I remember sitting across from her in the restaurant. While we were at dinner, I started getting stomach pains, and we headed back to the dorm.

After a few hours of this, I went to the emergency room at Brigham & Women’s hospital in Boston. While I spoke to the attending, I speculated that it might be food poisoning as Pam and I had just been out to eat at a new place. He said, “You probably just have food poisoning. If it doesn’t get better, come back to the ER.” Several hours later, I wasn’t any better so back to their ER I went.

I remember being put in a hospital gown on a gurney by myself in a room. At some point, I began vomiting. And that’s how I spent the next 36 hours – alone, on a hospital gurney with severe stomach pains and unremittant vomiting. I am not sure how I got word to my family. I may have called or I may have asked my friends to call. Two close friends, Patty and Christy, came to see me briefly. I called Chris, the guy I had been seeing, and begged him to visit me, just so I wouldn’t have to be alone while I waited for either something to be done or my family to come join me.

At some point on Sunday, the ER staff finally decided to insert a nasal-gastrointestinal (NG) tube. Doing so alleviated both the vomiting and the stomach pain. I was admitted to the hospital, and my mother and sister Madeline came to Boston to stay while I was there.

By Monday, the pain came back. When the surgeons told us they wanted to operate on Thursday, the three of us collectively freaked out. My sister insisted that they operate sooner, and I was hysterical because I could not deal with being in excruciating pain for the next few days. The doctors caved, and I went into surgery on Tuesday or Wednesday.

This was a lifesaving move. Because of the delay in treatment, part of my small intestine had begun to turn gangrenous from the blockage. The surgeon told my mother and my sister that if they had waited another day to do the surgery, I would have died. This was not the first time my mother had to hear this from a doctor. After my appendectomy, my mother was told that I would have died my appendix had burst before they had gotten a chance to open me up.

I didn’t know about that when I was a child, but I learned about my appendectomy close shave after I had my surgery for this blockage. When you hear doctors say that kind of thing about you, you feel like you have barely missed being scraped on the edge of Death’s razor. I couldn’t get those words out of my head – It’s a miracle I lived. I could have died. I came so close. If only. If only. If only….

Because of the gangrene, I had an infection. The first antibiotics they gave me did not work, and a fever persisted. After about a week, they changed medications, and I was on the strongest dose of antibiotics they could give me. The medication worked, but it left me without any good intestinal flora, either. I became completely lactose intolerant. A pat of butter could send me into intense spasms of pain for years afterwards. I spent many years building up the good bacteria because I was not going to live without ice cream for the rest of my life, that much I could tell you. Or butter. Definitely. Needed. Butter.

I had one roommate during my three week stay in the hospital. My roommate, Mary, was in the hospital to have a colostomy bag installed. We spent many a days together, watching commercials on TV, and talking about food. You’ll never hear someone talk about food in such mouth-watering details as from the person who cannot have any. My mother marveled at how we could even stand to look at food, given that we couldn’t eat any.  But it gave us something to talk about and to pass the time. Spending weeks in the hospital begins to feel like months. Years.

In both our cases, our tubes needed to come out, and we both needed to be able to eat food and keep it down. In Mary’s case, she also needed to be able to successfully use her bag while they watched to make sure no infections occurred. My mother and Mary exchanged Christmas cards for many years afterwards, even after I’d long put the stay and my roommate out of my mind.

As a teenager, I counted the years, months, weeks, and days until I could go away to college. My hospital stay seriously interfered with my plans to stay away. I was forced to withdraw from school because I knew I could never catch up after missing the practically the entire month of November away from school. The thoughts of having to go home indefinitely caused me to panic, and my dread of being pitied resurfaced along with my long-buried fears about my body, my health, my endurance, and my ability to support myself in life.

My aunt and uncle drove up to Boston to see me. My father brought them into my room. All I remember is that they either expressed through sighs and sounds or with words that I felt were like pity, and I became enraged. I screamed at them to get out, that I didn’t want to be pitied, and I didn’t want to see them if they were only going to make me feel worse. I already felt and looked awful, with my tubes, hospital gown, and fighting a raging infection. I felt guilty and humiliated and angry, and I cried from the sheer frustration of my situation. When I cry, my nose gets stuffed and runs like I have a cold. I wanted to hide under the covers and disappear.

I remember spending time in child’s pose while on my bed in the hopes that I could encourage the gas to move through my system and come out the right end. I learned that nothing compares to when your digestive system is working properly. It is the most amazing experience in the world because I know what it’s like when it doesn’t. Sometimes I forget. But then life finds a way of reminding me, like it did earlier this month. I ended up in the ER with stomach pains like I have not felt since my last intestinal blockage episode in 1992.  But that’s for later.

As Thanksgiving approached, I asked about when I would be released. They were trying to decide when would be the right time, but I was determined to leave the hospital by Thanksgiving. The very idea of still being in the hospital on Thanksgiving, three weeks after I went to the ER, was unacceptable to state of mental health. There was simply nothing worse, to my mind, than being in a hospital on Thanksgiving. I simply was not going to have it.

Would they have let me go if I could not eat and poop? Of course not. I doubt they would have let me walk out of there. And I was lucky enough that I was able to leave the day before the holiday. But I didn’t go home. I fought with my sister about going home. I wanted to go back to my dorm to rest, and that’s what I ended up doing.

First, my mother and I went to the Registrar’s office at Boston University so I could withdraw for the semester. The day before Thanksgiving was technically the last day that I could have withdrawn without a financial penalty. However, after hearing what I’d been through, the staff member backdated my withdrawal form so that I could take incompletes on some classes and retake others the next semester.

So my mother and sister went back to NY, and I returned to live in my dorm. The school was not going to have time to kick me out of the dorm before the end of the semester arrived, and so, after the semester concluded, I went back home to New York to stay with my parents for the winter break.

~~ End of Part 4 ~~

Illness, Alienation, and PTSD – Part 3

Read Part I and Part 2.

Even though I liked my pediatricians, I feared the doctor’s office. I dreaded getting shots. Often, I was in the doctor’s office because of fever. I seem to remember getting a lot of them. I was also prone to terribly painful bladder infections. The getting undressed and into a robe. Feeling chilled and a bit scared while waiting for the nurse and doctor to examine me. I know readers know what I am talking about, but it’s the sheer frequency from recurrent illnesses and surgeries that had a profound affect on my sense of safety and strength in the world.

The two abdominal surgeries I had when I was eight years old occurred against the backdrop of my frequent visits to the pediatricians’ office. The fears of doctors and illness I already had became exacerbated by the extreme nature of the pain that led to my surgeries where I was necessarily and unwillingly separated from my family.  The separation felt like abandonment, even though I knew they would have been with me if they could.

The chronic exposure to the vulnerability of nakedness, illness, excruciating stomach pains, and surgeries hits you hard in to the core of your being. I learned that I could never trust my body. I didn’t realize until much later that it also meant that I could not trust my self. I learned that could not trust that terrible things would never happen to me. I  feared the future, and felt that safety is an illusion, even if I couldn’t explain it at that time.

I heard the words of comfort my mother uttered as pity, which I loathed. Somehow, I felt worse about my situation instead of better. I decided early to hide how I really felt until there really was no way I could hide it any more, just so I wouldn’t have to hear it – the sound of pity in her voice. I was terribly sensitive to the slightest change in tone in her voice, whether it be anger or anxiety. A pointed expression of fear could send me into an intense state of anxiety. I could hear her fear for my life, and I feared for my own life in response.

For decades afterwards, I had this intense desire to be physically near my friends and family at all times. I think this influenced the jealousies I felt towards friends when I saw them having what I saw as a closer relationship with each other than with me. I have no idea what they thought then. It probably isn’t true, and I didn’t ask. I wasn’t aware at the time of what drove me to have those jealous feelings.

Elizabeth Shue once appeared on the cover of Boston Magazine with the quote, “Vulnerability is my greatest strength.” But what about those of us for whom our vulnerability becomes tied in with our greatest weakness? In my case, it was my body and the feelings that I tried to bury as deeply as possible. How can I mine that vulnerability for art when it brings back the painful experiences that illness has put me through? My unwillingness to dig deep would have forced me to work through the bundle of repressed anxieties, fear, anger, and helplessness. I have worked on it with therapists over the years. But there are some things that cannot be forced.

Going back to school let me nestle myself into a routine where I could occupy my mind. But the intense anxieties I had lived barely under the surface. In one way, anxieties were ever present. In another, I tried to stuff them down deep inside and close them into a box with a lock. Ten thousand locks. My box had many leaks, and they could burst out in in fear and/or anger at any moment. An anger that was driven by a sense of helplessness and rage at the fate I had been dealt.

After my surgeries that I had when I was eight, I prayed to God and swore with all my heart that I would be a good girl if only He would keep me from ever having to go through that again. The promise became deeply embedded into my psyche. After a while, I no longer consciously remembered that promise. But there it was, subtly influencing my behavior for years to come.

~~ End Part 3 ~~

Illness, Alienation, and PTSD – Part 2

Read Part I.

One morning when my mother was fixing my braids for school, she left me with one done to run downstairs and swap the laundry. I don’t remember the pain, but I recall being bent over with my hands on the floor. She says she heard me calling her, and she came back up to find me like that. I was taken to the ER and admitted to have my appendix removed, which burst on the operating table. But for the fact that I was in surgery, I would have died.

When you have an appendectomy or an intestinal blockage, the treatment includes having a nasal-gastrointestinal (NG) tube through your nose and into your stomach. The NG tube is a life-saving piece of medical equipment. It alleviates vomiting, reduces the pressure from digestion, and allows your insides to heal. To make it go down easier, you drink water until the tube is fully inserted.  The tube is connected to a machine that siphons off anything in your stomatch and intestines.

During one of these stays, the nurse took out the tube only to have to put it back in a day or two days later because they realized (somehow) that they had taken it out too soon. I mildly protested, but then I stopped. I knew it had to go back in if they said it did, and I knew that struggling would only make it worse so I didn’t. Instead, I drank the water.

When a child gets sick in modern times, the childrens’ ward is bright and cheery. Family and strangers alike come by wards to cheer children up. There is art work around. Professionals understand that it’s important to make a child feel as comfortable as possible in this strange and frightening environment. You can even sleep overnight with them, I hear. When I was in the hospital in 1979, there was none of that.

The room I was in was like a regular adult’s hospital room with three beds, TVs, and one large window. The walls were white as were the sheets. My parents were only allowed to be there during regular visiting hours. Between the two stays over a three week period, I was without family from 8pm to 8am, for the most part. As an adult, I understand you can’t have family there all the time, but that was what I wanted when I was eight.

I would call my mother at 5:30am every morning to find out what time she would come to visit me. The NG tube is uncomfortable and, like many things about a hospital stay, makes a good night’s sleep impossible. I slept little. I napped. I waited until I knew my parents were up anyway to call, just to hear my mom’s voice. Knowing she would be there at 8am or 10a or even 1pm broke up my seemingly neverending day and gave me some hope. I had a visit to look forward to.

I remember my mother often saying to me, “I wish there was something I could do”, with a kind of panic in her voice. All that did was instill and increase my own sense of panic at my situation. I felt that, if my parents were helpless, I was even moreso. I hated hearing it. I heard the helplessness and the pity in her voice at a time when I yearned for encouragement and hope instead. Somehow, my parents’ helplessness impacted my psyche more than the skill of the doctors’ abilities and skills to fix me, to save me.

After about a week, I went home. I was soon back because I had developed peritonitis from the infection that leaked into my body when the appendix burst. Back to the hospital for another surgery I went. Back with another NG tube. Back alone or mostly alone in a hospital room for an additional week at least.

In addition to the thin horiztonal appendectomy scar, I acquired a long, vertical scar extending from at least two inches above my belly button to my pelvic bone area. They braced my scar with four clamps held by a thicker kind of cord. Their removal didn’t hurt, but it felt very odd. I remember the scars between red and irritated after the stitches and clamps came out. Whereas I had loved two piece bathing suits, I refused to wear one for meany, many years.

After I got back to school, all I wanted was for my life to return to normal. If you act fine, people will think you are fine unless you tell them otherwise. I already liked school, and it was an easy and convenient way for me to distract myself from whatever I had been through and the feelings about illness that lingered. Studying and school helped me ignore whatever feelings I needed to acknowledge. Back then, it never occurred to anyone to have me talk to a therapist. It’s just not a thing that was done or talked about publicly. If I could go back and whisper an idea in my mother’s ear, it would be that one. I really could have used it at that time to help me deal with what I experienced. Just because I didn’t talk about it did not mean I wasn’t affected by it, even as the years went by.

By the time my appendicitis happened, I was already well-versed in being thought of and thinking of myself as “the sick child.”  Even when I was in good health, my mother would tell me not to push myself. This continues to this day. On a regular basis, I was told to stop, don’t pursh forward, stay home. For years, her admonitions would enrage me because what I heard was discouragement, over and over again, when all I have ever wanted is to be reassured by her, that everything was going to be OK, that I would be pull through. Instead, I learned to fear things that were both on the inside and on the outside.

I needed a lot of time and a lot of therapy to understand that her losses traumatized her. But, also, I think she houses some kind of internal belief that we have control over the bad things that happen to us. From my experience, that’s not always the case. I used to fight with her to get me to do even ordinary things, like going to the school dances. Now I wonder how much of it was her fear of what would happen to me when I wasn’t around her to call the ambulance.

As I grew up, I internalized this sense of struggling to prove that I can do it, make it, live it. One time, a professor asked me in mid-class, “What are you trying to prove?” I was confused by her answer then. It was only years later that I begun to make sense of it.

~~ End of Part 2~~

Continue to Illness, Alienation, and PTSD – Part 3.

Illness, Alienation, and PTSD – Part 1

This is a difficult topic for me. I don’t even know if I can do it justice. However, given recent events, I feel a need to discuss this. Friends and even family might not understand how significantly illness has impacted my life.

The impact of illness on my life began before I was born. A couple of years prio, 4-month old brother died unexpectedly from an undiagnosed enlarged heart. As you can imagine, my family was heartbroken and traumatized. When I had a febrile seizure at 11 months old, it felt like hell. They had to put me on ice – literally – to bring down the fever until I could get to the hospital. The febrile seizures recurred regularly, and I was put on phenobarbitol to control them until I was 12. The barbituates caused chronic constipation, and the number one result of chronic constipation is appendicitis.  I’ll talk more about this shortly.

Falling sick with colds and fevers and going to the doctors’ office were a significant part of my childhood, frequently disrupting plans. I remember my mother often seeming frantic. Any hint of anything other than perfect health, even a sneeze, was accompanied by her asking me in a worried tone, “I hope you’re not getting sick.” I dreaded and hated it when she asked me that question.

I began to touch my own forehead to check for fevers when I wasn’t feeling well. Her anxieties became my anxieties. I began to keep how I was really feeling to myself as long as possible because I could not stand to hear that panic in her voice. I learned how to pretend I was fine so I wouldn’t have to hear the fear and the pity in her voice.

In second grade, my appendix burst on an operating table. While they saved me, I developed peritonitis that required a second surgery. I was out of school for three weeks. I missed out on playing the part of Cinderella’s wicked stepmother, a part I much relished. Three years prior, I missed out on being Betsy Ross in our town’s bicentennial parade because of fever. By that time, I decided that it wasn’t worth it to put too much effort into going after my heart’s desires because I could fall ill at any time. I couldn’t stand the pain of the disappointment, so I decided regret was preferable to disappointment.

When I came back to class, I was given hand-made cards from my classmates, some of which I still have and are not in the best condition. I remember sitting at my desk again, surrounded by my classmates, who left tons of crayons on my desk so that I could participate. I was overwhelmed by the outpouring of support and love my classmates showed me.

At the same time, I felt like an alien from another galaxy with experiences that no one I knew, not family nor friends nor classmates, what I had been through and how scared and helpless I felt. These experiences cast a shadow of separation between me from other people. It influenced what I thought I could and wanted to do, how close I felt to others, and what I was willing to share. Even good experiences could not ease the hole that I felt inside; the one that said I was different, that I had suffered pain and loneliness, and that there was nothing no one in the world could do to change that.

~~ End of Part I~~

Continue with Illness, Alienation, and PTSD – Part 2.

Feelin’ Somewhat Better!

I went food shopping on Friday at Fairway and got a lot of food. I picked up some interesting new meats, wild boar sausage and venison & pork sausage, as well as grass-fed beef and ground turkey for stuffed peppers. I picked up some golden beets with greens, chard, kale, lemons, and kirby cucumbers; cashew and almond butters; macadamia nuts, goji berries, and pine nuts.

I picked up some fermented items – kefir, a fermented yogurt; kombucha, a fermented tea; and kimchi, spicy fermented cabbage – the national food of Korea! I’m a member of a Facebook group called Foods for Fibromyalgia run by a certified nutritionist (among many other degrees this lady has) named Deirdre Rawlings. Getting probiotics into one’s diet via fermented foods is one of the healthful foods that she recommends. One of the issues with fibro patients seems to be not enough good microflora in the gut, so I figured I would try it out.

Since Friday, I have been putting an emphasis on eating meat that has iron, a variety of veggies, and a bit of fermented food to aid digestion. For example, I had muesli with fresh cranberries, chopped almonds, and coconut milk along with two tablespoons of kefir, which is like fizzy yogurt. With lunch, I took several sips of the kombucha. With dinner, I opened the kimchi and put a few pieces on my plate. I bought Your Mother’s Kimchi with napa cabbage, and boy is it delightful! You have to like spicy food before you attempt kimchi. My hubby used to buy another brand, but it wasn’t nearly as tasteful as this one was, and I wasn’t nearly as motivated to add it to my diet as I am now.

And I definitely feel like Saturday I felt better than Friday, and today I feel better than yesterday. When I got on the treadmill, I felt like I was in less pain than the last time I got on the treadmill (last Wednesday). I felt perky and peppy in a natural way. I made some jokes and generally felt like nothing was forced, that happiness could just bubble up a bit out of me because I was feeling that much better. It’s really hard to be the happy person you are when you’re bogged down with pain from head to toe.

I still have a lot of pain throughout, but I feel like I have a bit less brain fog. You have no idea what a relief it is to feel like your head is clearer than it has been in years, and that maybe it’s just a little bit of proof that you have haven’t entirely lost all the smarts in your head. Because, lemme tell ya, brain fog makes you feel like you’ve lost 20 IQ points. Now I feel like I’ve regain 5 IQ points. That can feel like quite a jump.

I hope everyone has had a great three-day weekend.

Happy Martin Luther King, Jr. Day!

Deciphering Health

In last Monday’s post, I mentioned the results I received of the latest round of bloodwork in the office of a NYC doctor who specializes in functional medicine. If you want to know whether you’re deficient in vitamins, minerals, and hormones and how to treat them, this is the kind of doc that you want to see.

My bloodwork came back with the following: low thyroid, low morning cortisol (morning sleepiness), low Vitamin D, very low Vitamin C (!!!), low iron, and low magnesium. I got a second prescription for thyroid medication (Armour) that I began this week to supplement a custom T3 slow-release thyroid medication that I began after my first visit in December. I’m taking iron with Vitamin C, magnesium before bedtime, and an herbal supplement for the adrenal glands, which are responsible for cortisol.

This week, I also tried cutting yeast out of my diet because I probably have Candida (symptoms of bloating, sugar cravings, and headaches). I essentially cut out sugar and breads of all kinds, sticking to crispbreads with no yeast, nor vinegars nor spices nor cheese nor anything that might grow bacteria on it. And I have no idea if it’s that or if it’s the Armour, but I have lost between 3-4 lbs. With low thyroid, it can be hard to lose weight. Everyone says that it gets harder to lose weight as you age.

But what if it isn’t your age? What’s if it’s just that you are low on thyroid, and that’s why the weight stays on? Acne and headaches are also indicators of thyroid problems, both of which I have. So, is it yeast or is it thyroid that’s keeping me in constant headache status? I don’t have a minute of a day in which I am not cognizant of some level of headache. I can’t remember the last time I had a headache-free day. I guess I’m just going to have to wait to see if my thyroid levels get back into the optimal range to find out.

I talked with a friend after my last medical visit. She wanted to know if the doctor knew why all this was happening. Would you believe that question didn’t enter my head to ask the doctor? You go into a doctor, you think you’ve asked everything you’ve wanted, and then your friend asks what’s the problem. Brain fog! I have been saying that I’ve had fibromyalgia for years because that’s what the docs I saw decided it was. Apparently, brain fog is also a sign of thyroid issues, as is lack of concentration. One specialist I saw pooh-poohed the idea that I needed bloodwork to test for Lyme or for anything, really. After what I’ve experienced, all I can say is:

Don’t listen to them!

If you don’t feel well and you’re not getting better, you need a doc and a panel of bloodwork to find out.

After moving to NY, the doc I chose did a whole lot of bloodwork. But since she’s a primary care and not a functional medicine doc, she did not get me on supplements. A year goes by when I tell her that I want someone to treat the whole me because I reject her idea of going to a psychiatrist just to manage the adjustment of Cymbalta.

I started taking Cymbalta because it was reported to help patients with fibromyalgia sleep better at night, one of the signature problems in fibromyalgia. I wanted off the Cymbalta because of the expense and because it’s not helping the problem itself. I am tired of spending $200 a month on pain and sleep medications. If I have to spend that much, I might as well spend it on supplements that are addressing deficiencies.

My primary care referred me, and so this is how I end up with this functional medicine doc who does blood work and puts me on appropriate meds and supplements. Then my friend asks me what is causing all this. So now I wait, but this is fine with me. I started a file wherein I am keeping track of the questions I have for this doc at my next visit in April. Two weeks before going, I’ll get another round of bloodwork to see if the meds and supplementation are having any affect on my deficiencies. In the meantime, I decide to start reading.

Trying to educate yourself on health issues by reading online is likely to leave you confused and with a headache. From what I gather, gut issues (Candida, for example) can cause an inability to absorb nutrients. Lack of nutrients affects your body’s ability to create hormones (ie. thyroid). Stress, lack of sleep, etc. can disrupt the HPA (hypothalamus, pituitary, adrenals) axis, which leads to a disruption in the hormones that these organs produce which, in turn, causes a disruption in the ability to absorb nutrients.

I have been exercising regularly, I meditate daily, and I have relatively low levels of stress (although driving on the roads can send it soaring occasionally). I definitely need help with the sleep thing, still, but I am going to give supplements the time to do their thing. Even though the gut – vitamins absorption – hormones – sleep cycle seems like an unending loop, fermented foods can help restore good bacteria in the gut. Things like birth control pills, long-term antibiotic use, and lack of fermented foods in the diet can contribute to poor gut. From what I have read, a restored gut can also mean reducing or lose food allergies because it’s now back to being strong enough to handle what you eat. It’s been suggested that certain food allergies, like to gluten and dairy, might actually be an issue with the microflora in your gut.

Fermented foods are things like sauerkraut, kefir, kombucha, and kimchi. I bought milk kefir this week, but I want to get the kefir grains so I can make it on my own and reduce my expenses. You can also make kefir with water or coconut milk. I want to try my hand at making sauerkraut, although I will have to wait much longer for that to cure. I have friends who have made kombucha, and I’m going to try that, too. I want to become more confident in the kitchen, broaden my diet, and throw in some good bacteria. Sounds yummy, doesn’t it?

I hope to the highest of high heavens that I can be restored to something approximating good health. I am coming to the conclusion that, although rour regular primary care doctor may be good to visit when you are sick with a bacterial infection, you need to go somewhere else, if you care about achieving optimal health.

Lessons Learned + Health Update

Apologies to my readers for missing my regular Monday blog post and neglecting to let you know when I would be back. So here I am, back with a couple of lessons that I have learned recently and a health update.

LESSONS LEARNED

Lesson #1: Never put off writing your blog post for “when you get home” from going into New York City because “when you get home” might well be past “when I should be asleep” and “when I am able to think clearly”.

Lesson #2: Working out in the morning truly makes you feel great and energized for the day!

I wanted to make sure I got my Monday workout in before my city trip because I knew I wouldn’t have time for it afterwards. I’m so glad I did! Hours later, I was still in an upbeat mood and energized about my day.

Lesson #3: Working out makes you stronger in ways that you might not normally perceive.

For my workout, I decided to go to an aqua fit class at my gym. Although trying to move quickly through water while holding weights is still extremely difficult, I found that the steps were easier. I also had more energy for longer and did not feel exhausted by the end of the class. I can only attribute this to the weight lifting workouts that I have added to my life.

HEALTH UPDATE

Last month, I went for my first visit with a functional medicine doctor in NYC about my fibromyalgia. From our discussion, he recommended folic acid and B12 shots that were administered in his office, as well as thyroid medication and supplements. He called the custom medication to the pharmacy as I sat there. I also left with an order for bloodwork that was to be done two weeks before the followup.

In yesterday’s follow up, I told him the shots gave me a 3 day burst of energy until I had one alcoholic drink that set me back energy-wise. Then we went over the test results: low thyroid, which we knew; low morning cortisol; low Vitamin D; very low Vitamin C; low magnesium; and very low iron. He called in a higher dose of the current thryoid RX and wrote me an additional thyroid RX. Finally, he noticed an elevated peptide that could be indicative of bone loss/osteoporosis, so he’s going to check its values again with the next round of bloodwork.

After some discussion, he confirmed that I probably have Candida and suggested dietary means to starve it or he could write me an RX of diflucan. I couldn’t make up my mind, so he wrote me the RX so I could make up my mind. He also gave me an RX for another round of bloodwork so that we can see how his recommendations are working.   I have a followup with him towards the end of March.

I can only say that I hope restoring vitamins and minerals in my body will ease this chronic pain that I have lived with for over 5 years. I would like to feel lighthearted and free, but it’s nigh impossible when the gravity of pain pulls you down. The next time you meet someone who seems grouchy, consider that they might be suffering in ways that you cannot see and in ways that you cannot know.

Office Date with a Doctor

Before I moved to NY last year, I was treated by Dr. A., a physiatrist (physical therapist + medical doctor), for four years for fibromyalgia. Dr. A’s approach included pain management through medications, proper sleep habits, daily meditation, diet, supplements, aqua therapy, and exercise. I implemented most of her recommendations on a regular basis. Although I did see moderate improvement in daily pain level, I experienced flare ups and my chronic fatigue, while improving over time, did not significantly see a reduction.

After moving, I found a primary care who has been willing to keep me on my current regime of pain medications (gabapentin and duloxetine). When I said I wanted to go off duloxetine, she wanted me to see a psychiatrist who would manage the administration of it. We discussed this over a couple of visits, and I told her I wanted to see a specialist  who would treat my fibromyalgia from a holistic standpoint, just like Dr. A had done. My primary gave me the name of a doctor in NYC who she thought might be able to help.

One night, I submitted my information online requesting more information. Within two hours, the doctor called me directly to talk. I was stunned at the quick response from the doctor himself, not one of his office staff. Office staff calling me back at night to make an appointment would have been unusual, but this even more so. When I asked what his availability was, I learned I could have gotten an appointment as early as two days later.

We discussed in brief my medical history, what I was looking for, and his background. In the past few years, I came across at least two other docs who claim to have had positive results working with fibromyalgia patients. One of them, Dr. Jacob Teitelbaum, uses an approach to treatment he calls S.H.I.N.E (sleep, hormones, immunity, nutrition, exercise). Turns out, this local doc is friends with Dr. Jacob Teitelbaum and uses the follows the same protocols to treat his fibro/CFS (chronic fatigue syndrome) patients.

I said I would call the office after I had figured out my finances because their office takes no insurance. No surprise there. Because I hate rushing into things and because my husband was not around for a few evenings to discuss this, I didn’t call back until the following week.

Yesterday, I met with Dr. D. who was just as pleasant and professional in person as he had been over the phone. I brought blood test results from this year’s and last year’s annual physical exams. Last year’s testing was extensive. My new primary asked if I had been tested for Lyme and other conditions, which I hadn’t.

After looking over the results, Dr. D said my thyroid values, B12, and folic acid values were low. While I sat in front of him, he called in a custom T3 med for me at a custom pharmacy. He gave me a B12 shot in my right arm and the folic acid shot in my left arm. If you’ve never had a folic acid shot, they HURT. He told me it would hurt for an hour. Fibro increases my sensitivity to pain. I felt pulsing pain over the course of two hours, and it caused me to have a diffuse flare-up of pain throughout my body for the afternoon until the pain in the arm finally died down completely.

To address my lack of restorative sleep, he also prescribed supplements – CoQ10, L-Carnitine Tartrate, and Corvalen (Ribose). One line of thought with fibro is that it is caused by the inability of your cells’ mitochondria to take in energy. This, in turn, causes painful spots throughout the body. These supplements help the mitochondria get the energy into the cells of your body to address the pain issue, which, in turn, lets you get restorative sleep.

I bought the three supplements from the office, though I could have gotten them elsewhere, because I wanted to begin immediately. I called the custom pharmacy and provided with the information to charge and mail me the medications. I took a couple of couple of the supplements last night.

Maybe it was my imagination, but I felt a tiny speck of a bit more alert yesterday afternoon. Today, same thing, although it did not translate to me feeling well-rested. Dr. D said it would take at least a couple of weeks to start feeling better. In the meantime, I am going to get another round of blood tests next week and then see him after the new year for a follow-up.

Dr. D said that he’s helped other patients and he can help me. I told him that if that were the case that I would be floating into his office the next time I saw him.

Wish me luck!

Follow Your Dreams Using The Gym Principles

I have learned and relearned a number of positive things since I began working out with a trainer in August. In my post “5 Truths I’ve Learned from Working Out” on October 23rd, lesson #5 was that I need to treat my writing like I treat the gym, but I didn’t give specific details on how to do that beyond committing to doing it.

In today’s morning writing, I thought about my trainer repeatedly telling me that he likes the way I work, that I’m motivated. He tells me that every time he tells me how many reps to do and I try for the higher number – every time. I think he’s saying that he likes that I’m always willing to give it a try before I decide that I can’t do it.

I began to wonder: What else about my attitude on going to the gym has been helpful?

Then I realized that I could take these principles and applied them to my creative life, too. I’ve long struggled with pursuing my heart’s desires, using logic to talk myself out of things I yearned or loved to do. Take it from me, people, that’s no way to live.

I am calling these lessons The Gym Principles, but you can apply them to any area of your life where you are feeling blockedThese principles are not in any particular order.

Approach your next step or task with an open, nonjudgmental, positive attitude

When Leo tells me I can do 15-20 reps, I shoot for 20 reps every time. Why decide ahead of time that I can’t do something? I won’t know what I can do until I try. If I stop short, then I only did what I told myself I could do. If I try for 20 and can only do 18, that means I challenged myself.

So often in life, we get derailed by others. Why do you want to be one of those people, too?

Set gentle goals, both large and small

My large, long-term goal for the gym is to get moving and stay healthy. Going to the gym and training are two ways in which I move myself towards the long-term goal. It’s a goal with a line that doesn’t exist because I will never be done. I am OK with that, and you should be, too.

Any day in which I’m exercising for 30-60 minutes is a better day than one where I didn’t. I want to get to the gym at least 4 days a week and train at least 2. On the other days, I do what I feel I can do (fibromyalgia pain can limit that) or take a class. Today’s a high pain day, so I’m going to walk slowly on a treadmill for 45 minutes.

Celebrate each day’s accomplishments and challenges

When I’m done at the gym, I feel better. The endorphins are pumping to whatever degree, and I can feel it. Since my goal was to get to the gym and do something, I am able to meet my goals on a regular basis. But I’m not detailing it to the most minute degree where any deviation is unacceptable.

Life is hard enough. Don’t join that team.

Instead, feel good about feeling good. You’re endorphins are running? Good. Did you challenge yourself? Great! So maybe you’re making slower progress than you like, but so what? Who says we’re entitled to anything going any way that we’ve already decided it should go?

Let it go. It’s OK to be proud of yourself.

Enjoy yourself

Yes, you. I’m talking to you. ENJOY YOURSELF. Are you working as a civil rights lawyer? Fantastic! But you should also be enjoying where it is you’re spending your time. Enjoying what you’re doing doesn’t mean that it can’t be serious or have a positive impact.

What more positive impact on the world can you have than being healthy? The world needs YOU and all the enthusiasm you can muster. You can be a force of positive change in the world simply by being positive. You can’t help but feel positive when you’re enjoying yourself.

So what are you waiting for?

Weather, Curcumin, Exercise, and Fibromyalgia

Despite some stress with my mom’s health issues in August, I managed to get to the beach a couple of times. That put me in a better mood. I think the summer does that to me, specifically, being at the beach, riding the waves, and relaxing to the sounds of the waves. One weekend, my husband and I biked about 10 miles along the Wantagh Parkway, which hugs the shoreline of Jones Beach.

Before we moved to NY, I had a number of conversations with my physiotherapist about the benefits of turmeric in the pain management of fibromyalgia, a syndrome that I have. For those who don’t know, fibromyalgia is a syndrome, not a medical diagnosis, because a cluster of symptoms appear for which there are no known causes or diagnostic tests. WedMD has a pretty comprehensive list of fibromyalgia symptoms.

I am not a big fan of turmeric, so adding it to my food presented a problem. At a local natural foods store, I came across a supplement called CuraMed by Terry Naturally. The supplement claimed to have 750mg of a clinically studied element of turmeric called curcumin (BCM-95). They also make a less potent version called CuraMin. I started that first and noticed a slight reduction in pain. After finishing a bottle, I let some time lapse, and then decided to try again, this time with CuraMed.

Sometime in the middle of August, I got a call from my gym, LA Fitness in Lake Success to come in for a fitness test that came as part of the gym membership I bought in February. Since I paid for it, I decided to go in. I should have known it’s an in to a sales pitch to buy a training package. Once I got there, I was hustled along to the manager, JM, with some serious sales skills! Even when I knew what was going on, there was a part of me that wanted to say yes. I ended up putting him off for a day to talk to Mark about it, but I signed up for a package. IU figured that, if I’m going to be in pain, it might as well be from trying to get healthy with exercise instead of just the same old same old fibro pain.

That was a month ago. Since then I have been going to the gym four days a week, twice to do weights (one with a trainer) and twice for some other reason – yoga or other classes). Today I went in and rode a bike for about 40 minutes, just to do something different.

I looked back on this last month and realized a few things:

  • The CuraMed supplement has eased off my depression. Whether it’s because it’s acting as an enhancer to the generic Cymbalta I am taking or because it is actually working on some level as pain relief on my fibro, I have no clue. I am actually still in a bunch of pain, but my mood has improved significantly.
  • I have experienced elements of euphoria after exercising which is more than just exercise itself. I know what it feels like to have endorphins rush through your system after a good work-out. This seems to be almost a bit of a mania. Tonight, I got home after a workout and danced around while I made dinner, and then had some champagne with my husband to celebrate our one year anniversary of our move to NY and my one year anniversary of my Master’s graduation.
  • That I can probably talk to my doc about coming down on the dose of my generic Cymbalta. I went on it because it was reported to help with sleep for fibro patients. The days I exercise I sleep much more soundly than when I don’t, which is at least 4 days a week.

All in all, I have been feeling  better despite the marginal improvement in pain. All I can do is keep on hoping that, one day, things will come together and I will cease to be in chronic pain every day that interferes with my life as it does now and has done for years.

Stepping Up to the Health Plate

I must confess: I have a lazy streak.

I figure that lazy streak was my counterpoint to the intense, competitive drive I have used over the years both to propel me forward and avoid dealing with issues. A one-two punch!

Now, at least 10 years in the making, I have been riddled with fibromyalgia. I have managed to get my sleep issues under control by using melatonin and/or Cymbalta to get a better night’s sleep, having regular sleep hours, and not using the computer a couple of hours before bedtime.

One area where I have not managed to get my act together is my health. The main problem is consistency. In that I have none when it comes to exercise. I rejoined a gym in February after moving to NY, and I began to go to the pool to do my aqua therapy and attend water aerobics classes.

When I got a call from the gym staff saying that my fitness test was about to expire, I decided to go in. I had paid for it, so why not?

I should have been more suspicious.

After meeting with a very able trainer named Abir, I got brought to a desk to talk about training. While my BMI is in the middle of the normal range, my body fat cent was under 28% of my weight. Eek!! When I said I couldn’t pay the $55 a session, he went and got his manager.

I should know better by now what’s coming.

The manager of the club, John, was direct, straightforward, and firm. I could feel myself being played, but when he dangled a $35 a session fee in front of my face and told me that building muscle would help stretch out the myofascial pain spots, I was like Where do I sign up?!

And sign up for personal training for a 9 month period is what I did. I went in two days later to meet John for initial numbers. I get a book with my stats that gets updated every time I come in. I am so ready to get better. I will do this weight training thing if it kills me. If these guys can also get me a bikini body as a bonus, I will be flying high come next year. I have my first session tomorrow.

What I really want is to work hard, build up my body, and feel good again so I can live my life without pain. I want to become one of those people who have so much energy, that they can pursue their dreams to their fullest.

Eating Healthy(er)

Consistently eating well is a chronic challenge for me.

When I am stressed, rushed, and – especially – lazy, I tend to open my fridge and pick out the items I don’t have to prep to eat.

Salad sits in my fridge, wilting. Instead, I go for nuts and fruit. And more fruit. And then again.

A few weeks ago, I started up my coffee habit again. This, combined with my tendency to eat sugar, is a recipe for exhaustion.

In my unscientific opinion, sugar and caffeine provide the body with false means of energy.

Caffeine is a stimulant, much like adrenaline. It wires you up and keeps you going even when your body lacks the nutrients it needs.

Chronic sugar intake exhausts your body’s ability to regulate blood sugar, tires out your pancreas, which produces insulin, and increases your intolerance to insulin (a condition often diagnosed as pre-diabetes). Sugar is also reported to be a major factor in cancer, as chronic sugar intake provides the cancer cells with a never ending source of growth energy.

I ate way too much sugar and caffeine yesterday, so much so that is a wonder I have not turned into a pile of sugar. The price I paid was exhaustion, both yesterday and today, from poor food choices and a too-hectic schedule.

I wondered why I have been unable to learn this lesson. When I have shared with my mother my desires to stop eating sugar, she provides a ready excuse: it’s the holidays, your birthday, a Sunday afternoon when it’s sunny, it’s just one cookie.

You would think my mother is built like a house. While she does have weight in her belly, she seems to carry it well. My struggles with energy and eating well have not been her struggles. I seem to be sensitive to sugar, unlike her.

I think I am a sugar junkie. In writing my evening pages today, I decided it might be helpful for me to post inspirational quotes regarding healthy eating in a couple important places.

The first quote I found that I printed, framed, and hung on my Pinspiration board is by Virginia Woolf:

The second quote I found, printed, framed, and put up on my refrigerator is by Hippocrates:

For myself, I find that positive reinforcement works much better as a motivation tool than dire warnings against what happens if I do not eat well.

Slowly but surely, my living area will contain images and photos of quotes, people, and place that remind me that love and loving choices are the way to make my way through any decision, especially ones with such a profound impact on all areas of my life.

On My Dad’s Birthday

Dad ProfileIf my father were alive, he would have celebrated his 89th birthday with his wife of 65 years, two of his daughters, one son-in-law, and his only grandson. Dad would have eaten cheese ravioli with meatballs. For dessert, he would have tasted fresh baked coffee cake ridged with white icing and walnut pieces. He would chased the cake with sips of Starbucks Gold Coast coffee served in a white china teacup with blue decorations all around it and on its plate.

Today my Dad would have laughed when my mom told the story of an excerpt from the book Lady from the Longboat Key by Edith Barr Dunn. Ms. Dunn successfully bought and sold real estate in Longboat Key, Florida. One of her businesses was a beauty salon wherein she employed two gay men and a female impersonator. One day, she came into the office to find the office refrigerator filled with different kinds of fruit. Frustrated, she asked the employees:

“What are all these fruit doing here?”
One of the men replied: “What do you mean? There’s only three of us here.”

My Dad would have been there when we used Facetime to talk to my sister M, her husband J, and their son J2  who are currently in Southern California to celebrate my brother-in-laws’ 50th birthday during J2’s winter school break. I can imagine his face lighting up like a shining star, mouth in a wide open smile, cheeks bunching up, and laughing just to be able to see his grandson on the screen and wish him a great vacation. My Dad would have wished them all a great time despite feeling nauseous and in pain from a growing, too-large spleen.

After the meal, my Dad would have turned slowly around in this chair to grab his walker, pull himself up, and take slow, steady steps. He would have retreated to the empillowed chair and selected a classic movie while he napped there. My family and I would have sat around, laughed, and talked.

We would ask my Dad how he felt, but the answer was the same as the answer the last time you asked. He was feeling, more or less, chronically nauseous and often unable to keep food down. He was in pain when he needed to bend or move because the spleen had grown so large that it was pushing on other organs. If it was a particularly bad day, my Dad would tell you that he prayed for God to take him. My mother would beg him to stay.

“I need you, Joe.”

The last four years after my Dad’s stroke were extremely hard on him. A robust, healthy, hard-working, construction manager who spent his days outdoors became a man too ill to enjoy his life, bathe by himself, or walk steadily unaided.  He often had difficulty swallowing and would choke on food. Whatever was happening to his body, his mind remained clear. He was a chronic insomniac who could never escape his body, the ultimate prison.

My father remembered living a happy life.

“When I was on the farm and worked outdoors, I was happy.”
“When I had no shoes because we were too poor, I was happy.”
“When all I had to eat was honey on a piece of bread, I was happy.”

I have seen pictures of my Dad when he was younger. My Dad was a man with a big smile, glistening teeth, and a hearty laugh. The man I see in those pictures is not the man I remember. I remember the old, sick man who wished to die because his body’s ailments took away his life’s pleasures. He stopped eating ice cream because it made him too cold. When that happens, life has gotten pretty bad.

My wish for you is that, whatever happens, you relish your desire to eat ice cream.

An Open Letter to Starbucks About Their Terrible Cafe Chairs

Dear Starbucks:

Once upon a time, you introduced a cafe that had comfy seating, including chairs that had ample cushions. Patrons could sit and relax, or work in a comfortable way. Although your cafe chairs had less cushioning, they were nonetheless chairs that you did not mind to use. Continue reading

Post Purrday Hangover

In March 2012, I gave up alcohol drinking completely after a night of overindulgence that brought with it a full-body assault of pain, which I attribute to my having fibromyalgia. Whatever pain I had was amplified to a point where I cried and considered going to the hospital. As I was on Lyrica, which says not to drink while on it, I decided I had been stupid enough and that I would stop drinking alcohol altogether.

As my October 18th wedding anniversary approached, I decided one drink on special occasions would not hurt. What I have discovered is that it really depends on the drink. Last night, I slowly had one bourbon on the rocks with lemon and sugar. With the amount of food we had, I do not remember even feeling tipsy. Today has shown me again that, for me, not drinking alcohol is best.

I woke up, took my meds, and went back to sleep for three hours. Even though I got up, showered, and ate, my energy has been super low all day. I was ready to fall asleep on the couch at 7pm. I took all my vitamins, ran a couple of errands, and drank lots of water.

I think in the back of my head is a subconscious tape running a loop that keeps saying, One drink can’t hurt. How many times have we heard this line in a movie, in newspaper articles about people who have been caught drunk driving, and at parties we have attended as teens or in college?

But one drink can. It really can, especially if you drink heavy and fast and try to drive.

Even if we put aside the issue that I am on meds, the fact is I keep thinking it won’t when in fact it does hurt.

Time for some positive reprogramming! Here’s to not drinking. I’ll only be missing out on pain, brain fog, and exhaustion.

Sounds great to me!