My Battle with Fibroids, Part One

It’s been a year since my surgery to remove uterine fibroids. My life is significantly improved—better in many ways. I can now look back on my journey with awe and appreciation.

You could say that I’ve won, but I have this feeling that they’re growing again. That’s how fibroids are. Some women, predominantly brown and Latina women, have more of a propensity to get uterine fibroids. As I intersect both demographics, I must have the right combination of genetic material to incubate them. I’m told that since I had the operation, they will never be same; that they can’t get as large as fists or deform my uterus, again. It’s the hormones that feeds them, and since I’m approaching menopause, the fibroids should naturally ease back on their growth, and eventually dissolve into the tissue whence they came, giving me peace as I age. I couldn’t wait for menopause to take care of my problem, however. My life was a nightmare.

Uterine Fibroids are a real problem when you can no longer control your bladder—going in or coming out. My life was miserable for too many months. My movements were dictated by my proximity to a bathroom and distances of travel and compounded by sitting. The math of my life consisted of such formulas:

one hour in a car

x seat belt

x the probability of a clean public toilet on the road

= maybe not

Sitting in a folded position for an extended period was also agony and resulted in complicated situations. Everywhere I went I needed to use the bathroom immediately upon arriving and again at regular intervals. If I ingested liquids, it was worse. It was not fun. I know people thought I was strange, but those brief encounters peppered with my frequent visits to their privies were nothing compared with the hardships I endured for almost two years.

Ironically, my fibroids didn’t like exercise either, especially anything that tightened my abdominal cavity or slimmed me down. All my troubles, like going to the hospital in the middle of night because I couldn’t void my bladder or the embarrassing monthly uncontrollable hemorrhaging, which ruined clothes and prevented free movement, were nearly diminished by forty-pounds of weight gain in just a year. All of these things impacted my mental health and self-image.

How could I possibly feel beautiful when my body was out of control?

I had to find creative ways to deal with the symptoms of my problem. Often in the middle of the night I found myself in the bathtub, stripped down, trying to drain my bladder in the tub. It was the only way to remove the blockage cutting off my urinary tract. Between the severe pain of the pressure of the fibroids in my pelvic cavity and the cold awakening of porcelain, this usually meant another sleepless night for me, and my partner, if he noticed that I was missing from our bed. This bizarre way of relieving my bladder developed as result of many experiments; it was humiliating, disgusting and painful, but I was driven to investigating my options by desperation and physical agony. I was often sobbing waiting for my urine to flow, but when the alternative is self-applied catheter or a visit to the emergency room, one gets inventive. Even if you practice, a catheter hurts, and when your bladder is being spliced nearly in half by a pelvic bone on one side and an angry, greedy fibroid on the other, a steady hand is not always possible. Time is critical. The longer it takes to empty it, the more painful the episode, partly because the bladder continues to fill.

You may be wondering why it took me so long to get surgery. Why did it take me so long to get surgery? My only answer is Fear. I can’t tell you how many women with fibroids whom I’ve met who were trying to juice their way through this health issue. Not wanting to engage doctors is a major factor for some women, not to mention access and that the procedure is considered elective. My previous GYN wanted to give me a cone-biopsy in the lining of my uterus with no anesthesia as a pre-op procedure. I really loved her as a doctor; she was professional and compassionate, but she was asking too much of me. That was an enormous deterrent to surgery for at least two years. I couldn’t fathom undergoing more pain with the ongoing pain in order to have a painful and invasive operation.  It’s scary to put oneself into the position where one must submit to general anesthesia and wake up to unimaginable new reality. At least, when I found the right doctor, the decision got easier.

After my second-opinion consultation with a new doctor, he left me with an important question to ponder. Was my identity as a woman tied to my womb—my actual physical uterus? Did I need it to feel whole? It immediately struck me as an issue of critical importance. I thought of a few friends who had lost their uteruses to cancer and reflected on how deeply bound to sexuality a woman’s womb can be. Also, I was aware of the historical sterilizing of black women. And, I wasn’t giving up on children just yet either. I wanted to keep my options open, which was another reason I delayed treatment. We kept hoping we could get pregnant despite the fibroids. So it was amazing that this doctor asking me what I wanted. I knew I had made the right choice; he was the right doctor for me, no matter my answer, because a person who thinks about what makes another person feel human is going to make every attempt to ensure that her humanity remains intact. That’s refreshing in a doctor, and essential in a human being.

A mentor of mine happened to have brain surgery the day after I had my myomectomy, (the surgery to remove individual fibroids from the surface and lining of the uterus). As we reflected on our lives a year later, we both agree that a good doctor can really tip the scales.  Even though the process of making the decision to have surgery can be frightening, it was totally clear that in these circumstances, a doctor with confidence and intelligence, and maybe some old-fashioned bravado, is a good thing. You want the guy or gal who can look you in the eye and say, “I’ve got this covered; it’s a piece of cake.” Silently I thought, Great. Do it. And, he did!

Advertisements

Manifesto of Pain: Winding Down a Season of Trauma

I was wondering why I had one outbreak after another for five weeks. I couldn’t seem to stop them. Every time I thought I was well, a new rash developed. As a result, I wasn’t sleeping properly because of the constant pain I was experiencing. Another interesting detail I noticed, and could not initially interpret, was the odor of my body. I found it acrid, even after a shower. I believe that cortisol and adrenaline were to blame. Like an injured animal, I was in high-stress alert. Stress was prolonging my shingles, causing me more pain. Here’s what I now understand:

Real pain needs real medicine.

It is time to take a look at the body’s Central Nervous System (CNS). Our bodies have a dual nervous system, the CNS and the PNS or Peripheral Nervous System. The Chickenpox virus lives in the spinal cord, the CNS. The rash itself attacks along the PNS on the body and skin. Neuralgia, associated with shingles is a consequence of nerve damage on the PNS. The PNS system contains the nerve cells that travel to the CNS. Nerve cells, unfortunately have a kind of binary functionality; they’re either on for off. After weeks of being on, nerve cells may no longer know how to shut off. In a sense, they atrophy in an “on” position, which is why a very common side effect of shingles is the chronic pain caused by nerve damage, known as neuralgia. Some unfortunate souls experience neuralgia for upwards of six months post-shingles! Poor dears.

 nervousatlasgroups

It was only while talking to a friend of mine who lives with chronic pain that I understood that my pain had not been addressed by my medical provider. Even though the doctor herself told me to expect pain, she never prescribed a pain medication beyond Motrin, and even with Motrin, I was not prescribed the maximum dose available. My gynecologist gives me a higher dose of Motrin for menstrual cramps. At any rate, after trying to “bite through a nail” for another week, I crawled back to the doctor, balled myself up on the examination table, and wept openly. I managed to finally get the lowest dose of Vicodine available. It didn’t help much, but I stopped sweating. My offensive B.O.? Gone by morning! Also, the doctor doubled my dose a day later. I finally slept the entire night. The next day, I had a smile on a face. I knew my body could finally begin the healing process.

 

I’m fascinated that while in my doctor’s office, writhing in pain, she was trying to give me antibiotics. Surely I had something else, she thought. This was not a normal shingles outbreak. Well, what if one’s skin is brown and one has had about four consecutive outbreaks in a five-week period? How will that look? Through my pain I had the presence of mind to reject the antibiotics, which were in part responsible for my weakened immune system, leading to my original outbreak. At home, while awake in the early morning hours, I looked at pictures of shingles rash. They, in fact, looked exactly like what I had, only on brown skin, no big surprises. But, was my skin color playing a leading role in my treatment? I think so. An additional powerful realization of how lucky I really am, knowing things were bad for me, was seeing that I’ve had a relatively mild case of shingles. My heart goes out to people who are suffering with severe cases. That pain must be unforgiving. I pray that those people had proper opiate pain medicine. I’m convinced that untreated pain will prolong shingles. This is a compounded travesty. Let no one who reads this allow anyone you know to go without the appropriate pain medicine during shingles.

 

I have had some comforts, one of which is laugh therapy—did you even know that there’s such a thing as Humor Therapy? Well there you have it. We all need a good friend, or ten, to make us laugh, let us cry and miss us when we’re down and out. One friend in particular has seen me through this crisis with sheer exuberance. Somehow, just at the moment when we are both about to cry, Robyn will say something that brings tears of laughter to my face, sending me running to the bathroom to void my bladder and avoid an accident. I don’t know how we manage it, but this unexpected joy has brought me back from the brink of darkness numerous times over the past five weeks. I know it has been the same for her. Even when we are laughing at ourselves, we look through a lens of compassion, understanding and childishness, touching the innocence in ourselves. We get silly people! And, it heals us deep down where the hurt curls itself up. Laughter is one of the few ways I know to naturally get high, elevate your mood, and stay in your body.

 

 

I don’t have all the answers or even fully understand this episode in my life, yet. What I do know is that talking to friends has helped. They have led me to alternative care. Their advice has translated into self-advocacy. Friends have driven me to the doctor’s office. Friends have let me cry when I couldn’t hold back the tears any longer. Friends have made me laugh my head off. Mostly, I don’t feel alone in my suffering. This has changed everything. I know I can’t rush ahead blindly. I must be mindful and manage my stress, avoiding extremes. I get to start over. Tea, anyone?

 

A Visit to the Medicine Man: My Introduction to Chinese Medicinal Herbs

On my odyssey of healing from shingles, I’ve stepped into the world of the ancients: the Art of Chinese Medicinal Herbs. I know nothing about Chinese Herbal Medicine except what I’m experiencing with Dr. Kang, O.M.D., in San Francisco. So far, I’m loving it.

To me Chinese Medicine means acupuncture needles. Because of this association, I was nervous about receiving an acupuncture treatment as my past experiences with acupuncture have all led to intense physical and psychological reactions. The needles stimulate me in profound way. More than once my head and feet have been on fire with enough vivid sensation to make the doctors react with haste to remove the offending needles. My first visit resulted in a nearly psychotropic trip in which I could not walk properly because I had no depth perception. The world was flat as I held my hands out in front of me, feeling for objects jutting into my space and patted at the ground with a foot that extended into the nothingness before me. Needless to say, I’m apprehensive to undergo acupuncture treatments, so it was only because it was recommended several times within an hour that I agreed to make the journey to see Dr. Kang.

To my delight, I was not treated with needles. Dr. Kang is all kindness and compassion. This is really important since shingles is traumatic enough without one having injury done by practitioners. I found him to be intuitive and a deep listener. He warned me to avoid stress, admonishing me to not repeat such a dreadful experience. To this wisdom I could only nod my head in agreement. He seemed to understand my pain so well that my friend, who took me to see Dr. Kang and sat with me during the examination, and who has been under Dr. Kang’s care for about five months, wondered if he hasn’t endured shingles himself. I personally doubt that such a calm man could work himself into such a place, but I’m the patient here, not he, so it shall remain a mystery.

After a consultation with Dr. Kang in which he asked me questions about my situation, he prescribed medicinal herbs. Dr. Kang measured my pulse on both wrists for an extended time, making notes all the while. He examined my tongue, too, which even I will admit looks scary. (More on the tongue in a future post, I promise!) What’s fascinating about this process is that I know nothing of what I’m ingesting in this steamy cup of root slivers and flower petals. It’s a faith walk. But isn’t this what we often do with Western medicine, as well? A doctor looks at us for five minutes, maybe he looks us in the eye, maybe not, and depending on your skin color, gender and age, a range of possible treatments will result. Dr. Kang, unlike some, is prescribing the medicine for the illness and the person without such a filter of services—you’ll get the herbs you need for your ailment. He’s treating human beings with human kindness. Lest you think that was all, he also gave me a list of food restrictions, which means that I can’t eat anything in my refrigerator. What a hoot! I don’t even mind, especially if it means that I’ll be well again, soon, and fully recovered. I’ll give up just about anything for my health. I’ve already given up so much.

His diagnosis of my situation confirmed my own insights and inspired my trust. The real threat to my health is permanent nerve damage, also known as neuralgia. My impressions during meditations are that my pain is manifesting in my body often without any corresponding tissue damage. Dr. Kang seemed to think that the rain exacerbates the symptoms of pain. I wasn’t sure, but the three days prior to my visit had been hellish, and there was rain a foot in San Francisco. Everything he said meshed with my understanding of my own situation or of my visualizations from Reiki sessions. In the end, Dr. Kang felt that acupuncture would not help me. I actually breathed a sigh of relief because I was secretly terrified of my entire body catching fire this time. Thank God for small favors! This gave me the opportunity to look at my healing through a new lens.

I took my herbs home and boiled them down to a concentrated brown liquid. The first sip was interesting, bold and pungent with a bitter aftertaste. At this point, I’ve stopped trying to taste the stuff and simply give thanks for the medicine I believe can heal me. Cut to the chase, Edissa. Drink your medicine! I downed the remaining elixir in three gulps and struggled to catch my breath, relax and hold it down.

I survived! I rewarded myself with a grape. Let’s see what the doctor says next week. Better yet, pay him a visit if you’re in need of care. I don’t think you’ll regret being seen by the Medicine Man on Clement. photo

Gleanings from a Shingles Bell-Jar

This week marks my fourth week battling Shingles. It is now officially a saga. What can I do now that the pain has moved beyond what Motrin can control? I am beside myself with pain—literally; I’m like an alien unto myself, watching myself wriggling beneath a glass. I don’t recognize this body anymore. This new level of pain, discomfort and sensation is almost more traumatic than Shingles itself.

After two weeks, I felt that I had sufficiently recovered to claim that I had overcome my ordeal, surviving all the worse that Shingles has to offer. That is when my second outbreak began. All of the healed areas were once again under siege. A new level of sensation has taken hold; torture owns my body. Itching, biting, and walking creatures move along the flesh of my chest and march beneath my arm at will. This can’t be real, I tell myself, but it is. My face muscles convulse; my eyelids—the tops and bottoms on both sides—twitch and pulse. My fingers go numb, and a star of pain ignites in the center of my back, exploding into emptiness. I cancel plans. Buckle down for another term. My sadness, resignation and grief at my emotional and physical distress are overwhelming.

When this all started, with my usual optimism, I decided that everything would work out fine because it was the beginning of my spring break, and at least, I could stay home and convalesce, and perhaps with some luck, party the last weekend before school. This is the story I told myself. This is the presence of mind I embraced. What a ridiculous fantasy. I urged my partner to go on vacation without me because there was no way I could do anything, go anywhere or see anyone. I have had to remain inside and sit with my pain. I maxed out on Motrin, going to the edge of the daily dose, reeling with pain at the end of the it; watching the seconds tick by waiting for the next capsule. I even tried to dull the pain with alcohol, but the beast will not be lulled by bottled trifles. I must ride this wave. I have no choice. I have to go on.

This is the new trauma of this illness.

The pain overwhelms me and my body coils in on itself like an angry snake. As I catch my breath, my eyes drown in tears. I can’t believe that I’m here—still—again! I’m not sleeping, because the pain is more intense at night. My teeth feel like they will crack from clenching of my jaw against the pain, and my head throbs with the pressure. I don’t understand what’s happening, but my body temperature drops, giving me chills and covering my body in thick sweat; the pain rises in waves all through the night. I wake depressed, but I put on a brave face. After all, I am a warrior. I am a survivor. I can handle this.

I cannot.

I am flooded with heaviness and the weighty tenderness of a body deprived of rest and fed on a sleepless night of torment. I begin to sob in agony. I am home alone; I can weep with abandon and no one will hear me. This is the problem. I am so alone with my pain. Depression has moved in and is finding the ground fertile. I miss my friends. I miss hugging people. I miss running around with the beautiful children in my life. I miss the amorous touch of my lover. I am an alien in this body. I reach out to friends—over the phone. Please make me laugh or forget. It is little consolation. I yearn to be well again, whole and pain-free.

This is trauma, emotional and physical trauma yet it does not compare to other traumas. To me, Shingles is a stern teacher. I must forgive her. Even if I don’t like the lesson, mastery is required. The imposed isolation and the loss of the vibrancy with which I customarily live are more than enough to crush me. I don’t have much to give, because just putting on a shirt feels like an accomplishment. But what I have learned is that people are precious. I don’t think I’ve ever taken this for granted, but now it’s even clearer. I can’t wait to hug people without flinching. Screaming babies will be no obstacle to quality time. I’m looking forward to spending more time with people. I know I’m not the only one affected by this disease. As a community, our lives have been altered.

MilletTheGleaners

On my way back and down from the crest of the curve, I am aware of how steep and sharp the descent is, no less perilous than any other journey of the human spirit. I hope to understand more about myself as I emerge from this dark night of pain. Like one of Millet’s peasants, out of sheer desperation, I am gleaning the earth for sustenance. I plumb my soul in search of the Edissa I’m becoming, holding my hand up to the glass in an awkward greeting. I see me there, and wonder, Who will be left from this fire? Will I know her?

My Ordeal with Shingles

I’ve had to learn to overcome the shame and pain associated with my bout with Shingles in order to gain insight into the lessons to be found here. For months now I’ve been asking God to release any unnecessary energy, negativity, doubts and fears I have about my life journey and purpose. Like most prayers, mine are often answered in unexpected ways.

The warning signs are now obvious. I clearly had a big problem from the start. Both my arms went completely numb for two nights in a row. This should have worried me, but I dismissed it. The rash started after that. My skin was very red, and itchy. The next day it was beyond itchy to a painful mass that wanted soothing to which I applied hydrocortisone with little result. On the third night I had classic flu symptoms. By the morning, one look in the mirror told me I needed to see my doctor right away; the red mass had developed bumps and felt like someone was rubbing glass shards into my chest. That was when I became alarmed. Apparently, this is the highly contagious stage of the Shingles and Chickenpox virus, Herpes Zoster.

The pain is unreal. Now imagine 100 shards of glass on your delicate skin, moving and burning into your skull through your spine. The agony you feel each time your shirt rubs lightly against your skin is enough to make you see little stars, exhale loudly and hold onto furniture. This is not a fantasy; the pain is real. Some people cannot even think straight when Shingles strikes. While the rash itself is localized to a small area of the body, the sensation is dispersed, owing to the neurological nature of the disease. It emerges from the spinal column and will send pain signals everywhere, including unaffected areas.

At this time, some myth-busting is necessary. Why do we have the crazy idea that Shingles only happens to elderly people? It must be especially bad then, too, but it’s not exclusive to our old age. Talking to friends, I heard from quite a few young women in their late thirties and early forties tell me of their experiences with Shingles. Shingles is the very same Chickenpox virus, which once it strikes, lies dormant in our bodies forever, like all viruses. Therefore, a key trigger is a compromised immune system combined with some sort of high-stress situation, which explains the myth; elderly people tend to experience a compromised immune owing to the natural aging process. The compromised immune system, however, is not enough to cause an outbreak. I’m convinced that stress is really the biggest factor to unleashing this severe pain and possible disfigurement.

In my case, a previous illness, treated with a double dose of antibiotics, followed by worry and stress because I had quit my job and concern about how things would resolve themselves, made me ripe for an attack. As additional factors, I had physical and psychological stress to contend with. I had been attending several dance classes, which exposed me to too many people’s germs and energies at a time when I needed to be more careful about my surroundings. My body just collapsed under the pressure. I had to withdraw from everything to allow my body to heal.

Through this humbling and debilitating illness, I learned that it’s good to have access to healthcare and pain medicine when one needs it. I have a high tolerance for pain, but there is suffering that one need not endure without reason. Shingles will stop you in your tracks. At times the pain medicine works against that reality. It provides a false sense of wellness and vitality, inspiring action over rest, mobility over sedation. Toward the end of my illness, I’ve made a decision to use less Motrin, not because I have to, but in order to sit still with my pain, to withdraw into the place where my body can best heal itself, by stopping the activity that relentlessly drives me. Sitting still has given me time to digest the lessons learned and understand this disease. Here are my recommendations to you if you ever have the unfortunate plight of a Shingles attack:

  • Get a copy of the Balches’ Nutritional Healing and follow as many of their recommendations as you feel comfortable with.
  • Stock up on the highest milligram of Motrin possible to help with the pain. It really is unbearable.
  • Get real pain medicine, an opiate to help soothe the pain.
  • Invest in some Valerian tincture to help you sleep.
  • Sleep, rest and nap as much as possible. If you have sick leave, take it; you will no doubt need it.
  • Find out about the shingles vaccine. It’s available to individuals over 50. If you’re eligible for the vaccine, get it. Though I make this recommendation, I don’t know whether or how it works. Ask your own questions.
  • Get some Reiki or other body work as soon as you are able.
  • Stay away from children or anyone who has never had chickenpox.
  • Surround yourself with beauty, flowers or anything that will nurture your heart and soul. You will need to be uplifted.

As I recover my strength, my body and health, I continue to ask myself about why I felt ashamed to admit to this illness. I was reluctant to mention it to friends; I didn’t want my partner to tell people; I wouldn’t explain why I was out sick. The shame was emotionally crippling. Upon reflection, I see it has always been hard for me to appear weak, to ask for help, to say I can’t. Shingles made me vulnerable to the degree that all those things were true. I am weak. I need help. And, I can’t just keep going like nothing is happening. I’ve had to own all of this.

In the end, shingles seems like an extraordinary gift. I have had to stop and be still. I have had to listen and withdraw. My dreams have been vivid and portentous. I have had time to talk to the people I love. I have found refuge in myself. I know there are several other lessons that will be revealed to me through my healing process. I await these lessons with eagerness and an open heart and mind. This is one lesson I don’t want to repeat.