To Hell and Back: Discovering the Mercy of Allah on my Journey with Chronic Pain

To Hell and Back: Discovering the Mercy of Allah on my Journey with Chronic Pain May 28, 2019
discovering mercy Allah journey chronic pain
Photo by ilham akbar fauzi on Unsplash

I have been jogging since I was 12 years old. It was part of life for me. All of Allah’s beings in unison, and I, an attentive admirer. Every step through the northern breeze brought me one step closer to flying.

During my second pregnancy, I tested positive for anti-c antibodies but was never given the medication needed to prevent my own body from destroying the life inside me. By Allah’s grace and several intra-uterine blood transfusions to my baby boy, he was born via c-section; a blotchy c-section at that, though none were the wiser. As I later looked at the hideous, keloid-laden scar that stretched across my abdomen, I only wondered what the inside looked like.

Weeks turned into months, and my vigilant routine of jogging commenced. However, as time went by, a slightly gnawing sensation developed in the lower left quadrant of my abdomen. I ignored it. As the sensation turned to pain, I subconsciously started to reduce my activity. Jogging turned to walking, walking turned to limping, and limping turned to being bedridden.

The transition to being almost bedridden was not a fairly quick one, as stubborn as I am. It felt like a painful, torturous game that trickled to my mind, exhausting me not only physically, but also mentally. The mental anguish was the worst. My abdominal pain soon traveled into my pelvis, causing stabbing, electric shock, burning feelings into the nerves that innervate those muscles. This happened whether I stood or not.

I couldn’t take care of my kids anymore. They were 2 and 4 and devoid of a childhood. We got babysitters, nannies, expensive as hell au-pairs, but nothing appeased my mental state, not to mention they all sucked and eventually took advantage of my utter dependence.

During that time, we lived in the most beautiful house with a grandiose view of our community’s 18-hole golf course. There were times during this illness that I couldn’t leave the house for months, with not a single encounter from an adult besides my husband, who became my sanity. The mornings were the worst. The kids would be in school or with the nanny and I would stare into the enormous taunting field behind my house, alone with my thoughts. It’s a beautiful view and every morning a family of egrets would strut their long legs across the field, reminding me of what I couldn’t do. I was jealous of birds. This became the state of a person who was chronically ill.

My husband is a doctor. I don’t pigeonhole him into a field, but unlike most doctors, he never memorized. He understands the body as a whole and the calamities that can befall each limb, nerve, or muscle. However, to pigeonhole him, his specialty is physical medicine and rehab and interventional pain. The unfortunate circumstance of his studies was that he never touched the abdomen and pelvis. He perfected the study of the brain, neck, spinal cord and back, legs, knees, feet, arms, hands, and chest, and all their ailments, but never the abdomen and pelvis.

Every morning a family of egrets would strut their long legs across the field, reminding me of what I couldn’t do. I was jealous of birds. This became the state of a person who was chronically ill.

So we traveled to doctors and physical therapist across the state and country. Many doctors believed the pain was in my head, because I so enjoy being bedridden and useless. I had multiple unnecessary procedures, even took out my uterus. The “world renowned” doctor emphatically claimed, “Your wife will be walking out of here pain free after this!” Yeah, I walked out and developed a massive hematoma that almost killed me. Oh, and my pain was still there, but amplified because the hematoma kept pressing down on my inner sutures.

Screw them all, I thought, except it wasn’t screw. The doctor that took out my uterus was 100% certain that I had a significant amount of scar tissue inside the lining of the uterus, but he was just after the money. We paid out of pocket, as he never accepts insurance, just takes and takes. Most doctors are guilty of indifference and I swore them all off entirely.

A year ago, my pain escalated to a level unimaginable. I could not alleviate it no matter what I did, whether I lied down or stood. I ended up in the ER, vomiting once or twice, and had tests done that all came back clear. It was during this visit that I met a GYN doctor who was genuinely caring and inquisitive. We gave her my operative report from the hysterectomy and she was puzzled. “Your uterus was fine. Why did he take out your uterus? And how could he claim you have stage II endometriosis prior to doing a scope?”

The more we talked, the more my husband and I realized we had been swindled. I didn’t take it too hard because I knew I would have done everything and anything to alleviate my pain. My husband took it harder. “It was my fault,” he said. “I’m the doctor, I should have protected her. I should have known.”  He always wanted a large family.

We gave the GYN my operative report from the hysterectomy and she was puzzled. “Your uterus was fine. Why did he take out your uterus? And how could he claim you have stage II endometriosis prior to doing a scope?”

I set up meetings with my new GYN and we decided before we do anything invasive, we would do everything conservative. I had taken all kinds of hormonal pills in the past, but to no avail. She suggested we use the atom bomb of all things endometriosis related: Lupron. I was afraid of Lupron before. It inhibits estrogen completely and causes premature menopause. Menopause in a 30-year-old woman.

After 3 plus years of pain, I said, “Let’s do it.” The plan was if it alleviated my pain, it would be an indicator of endometriosis. If it did not alleviate my pain, I have something else entirely. The Lupron injection would last for 3 months, after which I would return for another if it helped. However, long-term use of Lupron is ill-advised since it thins the bones and will cause joint pain/issues. If it worked, I would have three doses in a span of 9 months, then take a break for 3 months with birth control pills.

The first three weeks on Lupron were absolute hell. It made my pain worse. I was sweating as if I had been submerged in a sauna. It was too hot. It was too cold. My body ached. My nerve pain persisted and swelled to yet another degree. Not to mention I was a complete blathering jerk. I cried in agony to my husband, “I can’t do this for another 2 and a half months!”

However, after the third week, one day, my nerve pain reduced in half. Most days I could not walk for more than 5 minutes without panting and needing to lie down for an hour. This day, a sense of euphoria overtook me and I had energy to walk, to cook for my children (at this point we moved in with my in-laws). Things seemed promising. Throughout the three months, parts of my pelvic nerve pain subsided, and others reduced; however, that lower left quadrant pain was not touched.

Embarrassingly covering my face, I revealed to her my greatest fear: When she would go in, she would find nothing. I would be reduced to a mad woman with pain in her mind, but I swore to her I wasn’t imagining it.

During my next meeting with my GYN, she assured me my gradual pain relief was promising. If we did another shot, it could assist further. I went through with it, but this time, there was no further relief. Sure, my nerve pain was somewhat alleviated, but the thing that brought me to my knees, that kept me from being functional, was the gnawing, ripping, acidic pain in my lower left abdomen that persisted.

This wasn’t working. My husband and I brainstormed a theory that I could have a combination of endometriosis and adhesions, which are scar tissues that develop inside the body after surgery, possibly causing organs to adhere to each other. Lupron would not treat adhesions. My pain may have been the cause of adhesions forming after my blotchy c-section. We decided with my GYN that we would do a laparoscopic procedure to look inside the abdomen for endometriosis and adhesions, and if found, take them out.

When I had my appointment to finalize the laparoscopic procedure, I broke down in tears. Embarrassingly covering my face, I revealed to her my greatest fear: When she would go in, she would find nothing. I would be reduced to a mad woman with pain in her mind, but I swore to her I wasn’t imagining it. Scrambling for tissues, she reassured me that the amount of endometriosis or adhesions bears no weight on the amount of pain a person feels. It could be that we would find nothing, but we had to try.

The day of the procedure, my greatest fear was no longer that they would find nothing, but that I may not even survive. There are cases, albeit extremely low, of individuals dying from anesthesia, and with my previous track record, why the hell not? I prayed that Allah let me live because I wasn’t ready to go. As I went under, I repeated the shahadah.

Within the blink of an eye, I awoke. I thanked Allah for that privilege. My husband came into the recovery room and sat by my side as I was looking around at the other patients. To my left was a child about my eldest’s age. He’d had a heart surgery and his parents were careening over him with popsicles, water, ice, anything he needed. I thought to myself, Thank God it’s me.

I looked at my husband, still hazy with anesthesia, and asked him what the doctor had found. He was silent, then smiled, almost holding back a laugh. There was no need to listen. I have been married to him for 11 years. His smile at the face of adversity is a coping mechanism. He doesn’t cry. He smiles. After he said what he needed to say, there was a moment of silence that lasted maybe 2 minutes. I was gathering my thoughts. I finally said, “Alhamdulillah,” if not for me, for him.

To my left was a child about my eldest’s age. He’d had a heart surgery and his parents were careening over him with popsicles, water, ice, anything he needed. I thought to myself, Thank God it’s me.

The procedure cost me six weeks of bed rest, but it was necessary to see what, or in my case, what I was not dealing with. No endometriosis and no significant amount of scar tissue that could be causing the pain I am in. My husband asked her what we should do next. “Pain management,” she said. That’s lingo for narcotics to manage pain. After that conversation my husband thought to himself, screw these doctors. I will do this. I will figure this out.

During my resting period, my husband embarked on a journey to study everything there is to know about the abdomen and pelvis. He wouldn’t sleep some nights; only studying and writing, and rewriting and diagramming, as if he were taking his boards. During my fifth week of recovery, he did some manual tests on me to distinguish where exactly was the center of my pain. He deduced the nerve that was causing my problem, which must have gotten entrapped following my C-section.

After being certain it was not an inner abdominal issue, he deduced it had to be muscular and superficial. He called the most renowned doctor that deals with nerve blocks and ablations, asking him what he does when women come in with abdominal issues. The doctor said, “Well first I take out this nerve in the abdomen.” “Okay,” my husband replied, “and then their pain is relieved?” “No”, he replied, “but then I take out another nerve.” My husband asked, “Okay, so then their pain is relieved?” The doctor replied, “Not usually, but then I take out one last nerve.” He then asked, “Alright, then they come back and they have no pain?” “Not usually,” the doctor replied, “so we put them on pain meds.”

He was alone on this issue, trying to fathom and correct something that has never been dealt with properly. He studied more and after six weeks, we were ready to go through with a nerve block, which is steroid injection that combines anesthetic and steroids. The anesthetic would last for 8 hours, numbing the pain and making sure we hit the right nerve. After the anesthetic wares off, the steroid would theoretically lessen any inflammation. If it works, the steroid could lessen the pain for 1 day, 1 week, 1 month, or 3 months. If the pain came back after the anesthetic wore off, then we would have a diagnosis, but would need to burn the nerve.

He asked me if I wanted someone in the room with me. I looked at him, perplexed, and replied, “I had intra-uterine transfusions, a hysterectomy, laparoscopic surgeries and a couple of c-sections on my own. I’m fine.”

Lying down, my husband traced my abdomen, making sure to adhere to the landmarks. Three or four times he tested the area to make sure he was on the right spot. It was time for the injection. The reason why the abdomen is so tricky is because you can’t inject too deep. Inject too deep, you will pierce through peritoneum and into the abdominal cavity, which is a no-no. Inject too superficial and you miss the nerve completely. It’s not guesswork, mind you, but you have to pay close attention to how the skin feels as you pierce through. You stop the needle once you feel resistance; beyond that is the abdominal cavity.

As he prepared his tools, I covered my eyes with my arms crossed and repeated “bismillah” to myself repeatedly. He asked me if I wanted someone in the room with me. I looked at him, perplexed, and replied, “I had intra-uterine transfusions, a hysterectomy, laparoscopic surgeries and a couple of c-sections on my own. I’m fine.”

I said I wouldn’t look, even though I always look. So I looked anyway, of course. I saw as he pierced the needle into my abdomen carefully and stopped. He filled the space with half of the liquid, then came back out. He went back in again carefully and while inserting the rest of the liquid, asked me if I felt anything. I thought and felt and replied, “No. I feel nothing.”

It has been one week since that injection. Today I put my shoes on, my headscarf, my light jacket, and walked among Allah’s creation for the first time in four years. I felt the breeze again, listened to the birds sing, watched the leaves sway, and smiled like a fool, all the while saying, “Alhamdulillah.”

For a long time, I gave up all hope. But that is the beauty and mercy of Allah. Even when we turn our backs and hearts and forego His message, He still gives.

I still have muscle dysfunction and lingering nerve pain after being inactive for close to four years, but that will resolve with physical therapy, and Allah gave me the best Physical Medicine and Rehabilitation doctor in my aid. I still fear that abdominal pain when I walk, even though it’s not there. Maybe in time, this too will resolve.

Many times, I was reminded of this Hadith from Rasulallah (saw):

The Prophet Muhammad (SAW) said: There is no disease that Allah has created, except that He has also created its treatment. [Sahih Bukhari]

For a long time, I gave up all hope. But that is the beauty and mercy of Allah. Even when we turn our backs and hearts and forego His message, He still gives.


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