Find Support On Lupus Connect

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I just wanted to share some great new information with all my Lupus warriors out there. Did you guys know that The Lupus Foundation of America in partnership with Inspire, has launched LupusConnect™ ?  It’s an online Lupus community where individuals with Lupus and their loved ones can engage with others like them to share experiences, find emotional support and discuss practical insights for coping with the daily challenges of the disease.

LupusConnect encourages its community members to ask questions, reply to posts and read about others’ experiences in a safe and comforting community.

It can be accessed directly at LupusConnect.Inspire.com or through the National Resource Center on Lupus.

Research shows that Lupus patients and other autoimmune warriors are looking for social support and assistance coping with their disease. Specifically, they are looking for a resource where they can connect online with other people like them.

Based on this input and conversations with constituents, the Lupus Foundation of America partnered with Inspire to leverage its social health network and build an online community that brings together people affected by Lupus to share their stories and learn from the experiences of other people impacted by this devastating and life-altering disease.

“No matter how isolated Lupus can make people feel, LupusConnect offers people the opportunity to express their fears, frustrations, and hopes with others who understand Lupus firsthand,” said Sandra C. Raymond, Lupus Foundation of America CEO. “We are excited to partner with Inspire and to continue our commitment to providing people impacted by lupus with access to high-quality resources and support services.”

As people living with Lupus, we know first hand the difficulties we face and the benefit of connecting with others who genuinely feel our pain. Check out Lupus Connect. It’s free and it just might change your day.

 

 

 

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Pulmonary Arterial Hypertension

Pulmonary arterial hypertension is a life threatening condition that is very rare but often found in Lupus patients. This condition is a type of high blood pressure that affects the blood pressure in the lungs and the heart.

It’s the type of high blood pressure that occurs in the right side of your heart and in the arteries that supply the blood to your lungs. These arteries are called the pulmonary arteries and pulmonary arterial hypertension occurs when these arteries thicken or become hard and rigid. The thickening of the pulmonary arteries makes the blood flow more difficult.

Your heart has two upper chambers (atria) and two lower chambers (ventricles). Each time blood passes through your heart, the lower right chamber (right ventricle) pumps blood to your lungs through a large blood vessel (pulmonary artery).

In your lungs, the blood releases carbon dioxide and picks up oxygen. The oxygen-rich blood then flows through blood vessels in your lungs (pulmonary arteries, capillaries and veins) to the left side of your heart.

Normally, the blood flows easily through the vessels in your lungs, so blood pressure is usually much lower in your lungs.

With pulmonary hypertension, the rise in blood pressure is caused by changes in the cells that line your pulmonary arteries. These changes can cause the walls of the arteries to become stiff and thick, and extra tissue may form. The blood vessels may also become inflamed and tight.

These changes in the pulmonary arteries can reduce or block blood flow through the blood vessels. This makes it harder for blood to flow, raising the blood pressure in the pulmonary arteries.

As the pressure builds, your heart’s lower right chamber (right ventricle) must work harder to pump blood through your lungs, eventually causing your heart muscle to weaken and fail.

Symptoms

The signs and symptoms of pulmonary hypertension in its early stages might not be noticeable for months or even years. As the disease progresses, symptoms become worse.

Pulmonary hypertension symptoms include:

  • Shortness of breath (dyspnea), initially while exercising and eventually while at rest
  • Fatigue
  • Dizziness or fainting spells (syncope)
  • Chest pressure or pain
  • Swelling (edema) in your ankles, legs and eventually in your abdomen (ascites)
  • Racing pulse or heart palpitations

Risk factors

  • You’re overweight
  • You have a family history of the disease
  • You have one of various conditions that can increase your risk of developing pulmonary hypertension
  • You use illegal drugs, such as cocaine
  • You take certain appetite-suppressant medications
  • You have an existing risk of developing pulmonary hypertension, such as a family history of the condition, and you live at a high altitude

Treatment

Pulmonary hypertension can not be cured but doctors can help you manage your condition. Treatment may help improve your symptoms and slow the progress of pulmonary hypertension.

It often takes some time to find the most appropriate treatment for pulmonary hypertension. The treatments are often complex and require extensive follow-up care.

Although pulmonary arterial hypertension can affect anyone, patients with Lupus are at an increased risk of developing the condition. 

This life threatening condition must be taken seriously. If you suspect you or someone you know may be suffering from pulmonary arterial hypertension, speak with your doctor as soon as possible.

 

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My Story

 

PART ONE

So let’s start with a little bit of background information. To understand where I am right now in my Lupus journey, you must first understand where I started.

Before I begin, I want to point out the devastating fact that people of color are three times more likely to develop Lupus in their lifetime. We are also more likely to endure a more aggressive level of Lupus symptoms and flare-ups. I have my own theories on that little fact but we will touch on that at another time.

Lupus tends to run rampant in the bodies of people of African, Chinese, and Caribbean descent at an alarmingly higher rate than Caucasians.

On that note, let me give you a bit of my genetic makeup. My mother was an even mix of both Chinese and Jamaican. On appearance, she leaned more towards the Chinese side of her family but was born and raised in Kingston, Jamaica.

My father was a full blown West African from Nigeria. So based on the previously mentioned statistics, I’m pretty much screwed. Or at least, so it seems on paper.

I was born and raised in the Gun Hill section of the Bronx, New York along with many other West Indian families that migrated to New York in the seventies.

At the age of 12, my mother died and I went to live in Nigerian with my father. At the time, my father was recently retired from his post as two – term Nigerian Ambassador to the United Nations.

I lived in Lagos, Nigeria for the next three years while also attending boarding school in Ogun State. During my time there, I contracted malaria several times despite the stupid immunizations they give you prior to leaving the U.S. (to supposedly protect you from that horribly fatal disease.)

The doctors in Nigeria were shocked I lived through so much suffering with malaria. I was told children die from malaria with less severity than I had experienced.

I can still recall one of my father’s doctors telling me that if I didn’t die from malaria, I would still never be the same again. He warned me of the reality of having a compromised immune system and I would have to take special care of myself if I wanted to live longer than my mother (who died from a heart attack at the age of 42.)

Of course, like most teenagers, I paid him no mind. I was just fortunate enough to live through yet another bout of malaria and my only concern at the time was figuring out how to return back to America.

Long story short, I came back to America 3 years later at the age of 15 and tried desperately to forget about all the near death malaria experiences.

Five years after my return, at the age of 20, I gave birth to a beautiful baby girl after some complications that could have taken her life.

I was young and naive and I was just happy to call this amazing bundle of joy my own. I had found love in the purest form. I never thought twice about the complications during delivery because she survived. To me, that’s all that mattered.

When my daughter’s father went to prison for eight years (don’t ask. SMH), I struggled to support my daughter on my own and did okay for us despite minor disturbances with my health here and there. I just summed it up to the residual malaria in my system.

A few years later, I got pregnant again with different results this time. After about two and a half months, I started bleeding. I thought I was having a miscarriage as the bleeding grew heavier and heavier each day. Of course, I was told to go to a doctor. Over and over and over again. But, like I said before, I paid it no mind. I am pretty stubborn and truly hate dealing with doctors.

I was busy making moves and trying to get my life together with no regard for the fact that my life was in major jeopardy. But I didn’t know just how much at the time.

After five days of heavy bleeding, I was finally convinced to see a doctor. I went to a walk in urgent care center where I was quickly transported to  an Emergency room at a major hospital. There, I quickly learned after ultrasound and laparoscopy, that I did not have a miscarriage as I thought. Instead, I had an ectopic pregnancy. WTH?

I had no idea what an ectopic pregnancy was. The doctors explained that the fetus never made it to my uterus. Instead it made itself comfortable in my fallopian tube right up until it outgrew the tube and then burst.

I didn’t quite understand the gravity of the situation, but I could tell the doctors were really scared. So, I signed the permitting paperwork to allow emergency surgery and off to the operating room I went.

I woke up after surgery to find a bag of morphine attached to my IV and about three doctors asking me a slew of questions.

They wanted to know how I got to the emergency room in the first place. They also wanted to know the degree of pain I was in when I entered the hospital.

Truthfully, I experienced little to no pain from the onset of the bleeding until the day I went to the hospital. The doctors didn’t believe a word I said. They told me it was not humanly possible to live with a ruptured fallopian tube for days.

In my defense, I told them to feel free to ask those around me during the days leading up to my hospitalization.

Basically, they called me a medical miracle and asked me a ton more questions as I drifted off to sleep from the morphine.

In a nutshell, the doctors told me that I would have died if I had not had surgery within the hour the actual surgery started. That got my attention. I asked what would have caused this rare type of pregnancy and could not get a definitive answer.

My right tube was completely removed but they were able to leave the ovary on that side intact. I was told that it would be extremely difficult to get pregnant again, and that if I did, I would likely experience the same ordeal again.

PART TWO

Fast forward nine years later, I became pregnant again with a different outcome entirely. I saw a doctor early on to be sure the baby was actually in my uterus. The doctor confirmed and I was delighted. My husband and I, like most couples, prepared for the baby for months. I felt so blessed to be given another chance to have another baby with a man that adored me just as much as I did him.

Shortly before my sixth month, I had a strange feeling that something was not right. Due to complications in my very first pregnancy, I never went through the traditional “water break” moment. I had an emergency C-section and never really experienced real labor. So, I was basically a newbie all over again and was unsure what would be considered normal.

This time was different. I suspected that there may have been a slow leak of amniotic fluid so my husband rushed me to the hospital where my suspicion was confirmed. Immediately, the doctors did everything to prevent me from going into labor because it was just too early. They positioned my bed in an upside down position to reduce gravity and I stayed like that for over a week.

By day nine, I was definitely in labor. Long story a bit shorter, I gave birth to a son who weighed in at almost two pounds. The doctors placed him on my chest as I handled the afterbirth mess. Ewwww.

I realized fairly quickly that my son was not crying.

My baby boy was stillborn and I was devastated. Needless to say, it was a difficult time for my family and we did the best we could to heal.

I didn’t ever want to relive that kind of pain again so I attempted birth control methods. Everyone of them made me very sick. Apparently, the universe had different plans for me. Six months later, I was pregnant again.

There were difficult times during the pregnancy and I took every precaution I could to have a different outcome. I was determined to remain hopeful even when no one thought I should be. Despite all my fears and worries, I gave birth to another beautiful miracle via C-section at full term. Thank God.

My second and last little girl was born healthy and just as perfect as the first.

I couldn’t help but wonder why I had such experiences with my pregnancies. I always made it my business to maintain some sort of exercise regimen and I was careful with my food choices. At that time, I was very unfamiliar with Lupus. I had no knowledge of the negative effects it could have on a pregnancy nor the fact that it had already likely invaded my body.

Like many with Lupus, I had early symptoms of joint pain and inflammation from time to time accompanied by extreme fatigue. I could always hear that Nigerian doctor in the back of my mind telling me that I would not be “normal” ever again. Once again, I blamed it all on malaria.

A few years later, I landed what I thought was a pretty cool job in Midtown Manhattan. At the time, I worked overnight and the fatigue began to get much worse. I increased my caffeine intake to keep up with the demanding schedule and job duties. Like most women, I did what was necessary to perform my job well without complaint.

The work environment became more stressful to me than the hours worked. I was constantly bombarded with stressful situations that I handled the best way I knew how while still securing my income. During my time there, my health slowly started to decline.

I experienced episodes of severe carpal tunnel syndrome with excruciating pain in both my wrists, a hairline fracture in my right wrist from a workplace slip and fall, and later massive inflammation and pain in both knees.

Lupus was not even on my radar at that point. One of my long term friends at the time had a mother that suffered from Lupus so I knew a little, but not much about it. Because I worked overnight, I had minimal sun exposure. I had no skin rashes so my doctors never thought to even consider Lupus until the swelling in one of my knees got pretty severe.

The doctor was sure it must be inflamed due to fluid retention and attempted to aspirate it. What a waste. The doctor couldn’t retrieve any fluid at all. The doctor sent me for a battery of blood tests to rule out lyme disease and other autoimmune disorders. He said nothing was conclusive so he put me on an anti-inflammatory medicine called Meloxicam.

With continued use, it seemed to do the trick to minimize the swelling and pain. Within the year, I managed to strategize my exit plan from the previously mentioned stressful employment and embarked on a mission of entrepreneurship.

I opened an online retail store with much success. I began touring the Northeast area doing pop-up shops in and around the NYC area. My body started to really display a seemingly deep hatred for me. I started experiencing extreme shortness of breath even when at rest. My breathing started to become very labored just from talking. I then began to notice lumps in my breast as well as my neck. I had to take a break from the business to sort things out.

This time I knew I had to take things more seriously. Sometimes I wondered if my symptoms were related to just getting older. I never had the chance to watch my parents get older so I didn’t know what to expect. (My father suffered a heart attack and later died from a stroke shortly after I left Nigeria.)

A voice in my head kept saying, “You have to get yourself checked out.”

Being a new entrepreneur, I no longer had the insurance from my previous employer and my husband had to wait months before he was able to add me on to his insurance. So, I did what all uninsured people do in a health crisis. I went to the emergency room.

What a waste. While I was getting my blood pressure taken, I fainted in the triage nurse’s arms. Thank God my husband was there to help catch me before I completely flattened that poor little lady. Because of my family history of early heart attacks and current spiked blood pressure, EKGs and other blood tests were run. The ER doctor concluded that I was not having a heart attack but was able to see that I had first degree congenital heart block.

First degree congenital heart block sounds much scarier than it really is. However, the doctor neglected to inform me that I was born with it as a result of Neonatal Lupus. Neonatal Lupus is a rare condition found in newborn babies when they are infected with Lupus antibodies passed down from the mother in utero.

Any symptoms a baby may have with Neonatal Lupus are generally gone in about the first six months of life. That is, except for congenital heart block which can cause a slow heart beat. The most serious and potentially life threatening congenital heart block is the third degree heart block in which there is a complete blockage. In my case, I was fortunate to have first-degree heart block which is the mildest form of this condition.

PART THREE

It was safe to say that I knew it was time to do the one thing I didn’t want to do. I had to apply for Medicaid! I needed to keep regular doctor visits and stay out of the Emergency Rooms. Emergency rooms only provide emergency services. While some things feel like emergencies to us, they will usually only prevent you from dying. That’s it, folks. Really.

They will provide you with half-answers at best. I encourage you to only go to an ER if you have no other choice because you may leave there so frustrated, the stress may aggravate things even more.

In my case, since there was no way to explain the severity of my shortness of breath with the first degree congenital heart block diagnosis, I was desperate to build a relationship with a reputable doctor who would give me real answers.

While I waited for Medicaid to approve me, I found myself in and out of emergency rooms for the next several months with no real answers. I was simply treated for whatever symptoms presented at the time. Those symptoms included major abdominal pain, gastrointestinal difficulties, shortness of breath, high blood pressure, severe abdominal bloating, and later kidney pain.

When I was finally able to utilize my Medicaid, I saw a primary care doctor who thankfully decided to run just about every blood test imaginable.

Within days, I was diagnosed with enough to make any healthy person faint. First, I was told I had a positive ANA. I had no idea what that meant and my doctor didn’t go into great detail to explain either. I was also told I had a positive H. Pylori result.

My doctor actually gave me copies of my test results and hurried me out of the office and told me to always keep those results with me at all times wherever I went. Ok.  That was strange.

His staff took me across the street where there was another doctor who specialized in gastrointestinal issues. There, I was given prescriptions for lots of pills for the H. Pylori to be taken over the course of several weeks.

By the end of the day, I had appointments set for an Upper Endoscopy, Colonoscopy, Mammogram, Breast Ultrasound, Echo-Cardiogram, and CT scans for my lungs, stomach, kidneys, and back.

They suspected cancer. Cancer in the stomach, cancer in the lymph nodes (lymphoma), and also breast cancer. They started treating me different. Different how? Nice. Like I was dying quickly. I was a nervous wreck and began thinking the worst.

Wanna know the results? Well, here it is. I was diagnosed with Sjogrens Syndrome, SLE (more commonly known as Lupus), Scleroderma CREST, Polymyositis,  Pulmonary Hypertension, kidney nephritis, Raynaud’s Syndrome, Spinal Arthritis, Shatzki Ring, and Pre-diabetes.

I didn’t even know what to say. I was speechless, mostly because I didn’t know what the hell any of it really meant, but my doctor said life was about to get really interesting. Major understatement.

The crazy thing about it was that, visually, I was in the best shape of my life. I would later come to hear quite frequently, “But you look great, You don’t look sick at all.”

 

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