Sickness, Setbacks And Seeking Treatment- Self Diagnosis Didn’t Solve My Problems…
Being an identical twin, it’s unusual that my twin sister hasn’t had any of the health issues that I have. We have numerous twins in our family that include distant cousins, aunts and uncles. Our grandfather was also a twin.Thankfully, Cindy was spared from all of the health issues that I’ve had including Precious Puberty, Endemetriosis, Thyroid Cancer and Benign Breast Tumors.
On the flip side of the same coin, our second generation twins, Maryssa and Makenna have similar health traits of my sister and I in that Maryssa was diagnosed with Precocious Puberty and had her tonsils removed at a very young age.
Makenna has had none of the health issues that her twin sister has had just like Cindy has had none of the problems that I’ve had.I remember looking at my sister when Maryssa was diagnosed with Precious Puberty at seven years old and wondering what it meant? We had never heard of Precocious Puberty but, we later learned that most likely it was what I had as a young girl.
Maryssa had to have an implant for many years to stunt her growth. We worried and fretted about it as Makenna grew taller and Maryssa stayed the same height while also gaining weight from the implant. The weight gain would cause her so much anxiety that depression regarding her weight affected her the last two years of having the implant.
I studied Precocious Puberty to learn more about it and realized that Maryssa had many similar issues to my own childhood illnesses.
The similarities scared me because from Tonsillitis to Strep Throat and now cycling early, my fear of Maryssa struggling later in life with precancerous surgeries and subsequent miscarriages was of great concern. I didn’t want anyone to go down the same road that I had traveled. The pain, the surgeries, the unanswered questions, the medical bills.
After a lifetime of emergency surgeries, I not only bought a Merck Manual but, also did a lot of research as to why my health was remarkably different from my twin sisters as was Maryssa’s from her twin.
Both of our twins didn’t have the same health hurdles and I wondered why genetics chose to single out Maryssa while skipping Makenna or Cindy. Bad luck or bad genes? I had horrible teeth as a child but Maryssa was blessed with a straight smile. Makenna needed braces while Maryssa didn’t.
For nearly fourteen years, I’ve closely monitored the twins medical appointments to prevent them from spending the years in surgery that I have. I ask questions at their doctor appointments. I insist on thyroid tests and am quite the pest. No one asked these questions when I was young and I don’t want to wait until Maryssa is in such pain that we wind up at the ER.
Determined to spot any abnormalities early with Maryssa or Makenna, my research taught me that genetics played a strong role in health issues.
I didn’t want my grandniece to struggle with not only infertility but also the possibility of Ovarian Cancer, Breast Cancer or even Thyroid Cancer. Cindy thought I was being an alarmist but, I saw too many coincidences with Maryssa and my own health issues to immediately dismiss the possibility of Endemetriosis or Thyroid Disease. Precocious Puberty is linked to both.
Back in the 60’s, no one knew what Precocious Puberty was and much less, how to treat it. Perhaps because of the lack of medical treatment in my teens and the pain I struggled with during my cycles, the rare visits to a physician during my childhood were predominantly related to Strep Throat or Tonsillitis. I was always at the doctor but, Cindy wasn’t.
By twenty four years old, my struggles with Endemetriosis would be well documented by my OB/GYN due to a series of miscarriages and an introverted uterus. The odds of me having a healthy baby were slim which is why I call my son The Miracle Baby.
I wasn’t able to carry my son full term and developed a host of health issues while pregnant. It was a consistent conversation with not only my husband but also his mother that “I couldn’t even have a baby correctly.” Yes. My inability to carry a child was a recurrent conversation with my Inlaws who were also outlaws and never had one positive word to say to me.
I wasted ten years of my life trying to get my mother in law to accept me or even tolerate me before filing for divorce.
My mother in law was at the hospital while I was in surgery for a C Section. I’m guessing she was also complaining about me being unable to have a natural childbirth too. She was a hateful old hag.
By the time my son was brought to me, I had been “advised” of a birth defect. Horrified, I imagined three eyes or six ears or worse. I had never heard the term Hypospadias in my life and had no idea what it meant.
The hatred of my mother in law’s glare told me that I had not only screwed up a natural delivery and couldn’t breastfeed but also, gave birth to a less than perfect child as well. I was nearly terrified to see the child I had spent years wanting. The looks on everyone’s faces as the Dr told me of a rare medical disorder said it all.
Holding my son in my trembling hands while searching for this “genetic abnormality” and being accused of a history of genetic disorders by my mother in law, it took a few moments to find what was different.
His dark skin was attributed to my Indian ancestors. My mother in law pointed out that “he looks like his mother that dark skin those hazel eyes. I see no resemblance of my son in this baby.” I thought he was beautiful and although there was a small defect, it was one that no one could see.My sister in law (at the time of my first marriage) had two blonde haired healthy children who were consistently compared to my son. “Kim’s kids are so fair, your son looks nothing like anyone in our family.”
As if I wasn’t dealing with enough health issues, my son was treated differently his entire life by my ex husbands family. I don’t miss them at all or their hateful attitudes either. The only regret I have about divorcing my first husband was that I didn’t do it sooner.
Being the first grandchild to my ex husbands parents, you would think they might’ve paid more attention to him but, they didn’t.
My son was never treated like their other grandchildren and I couldn’t understand why? He was a good boy and well mannered but, he was darker than the other grandchildren and his grandparents knew that “he was different. That birth defect. How will he ever have a normal life?” The idiots. My son was the greatest gift that I have ever received.
Due to my inability to breast feed because of kidney and diabetes complications, it was my twin sister, Cindy who finally butt in and screamed at my mother in law and the nurses to “get that kid a bottle and stop beating up on her.”
Thank God Cindy was there to protect me from the vultures in my room. The only true friend I had was as sick and tired of my mother in law and her split tongue as I was. Cindy is quick whitted and never at a loss for words.
If my sister in law, Kim hadn’t been having a perfect pregnancy in Texas at the same time as my own complicated pregnancy in California, perhaps my mother in law wouldn’t have been such a bitch but, I doubt it. I was never good enough for her. Janice made herself feel superior by running everyone else down.
Back then, pediatric urologists warned me that a Hypospadias Genetic Defect could also pass on to my sons children. It was a medical condition that I had never heard of but, after nearly losing the baby I wanted so much, also something I would have educate myself about.
Throughout my life, if I didn’t understand something, I educated myself. An education is something that no one not even my violent first husband could take from me.
For years, my son went through painful urological procedures to correct a birth defect that no one in my family or his fathers family ever admitted to having.
I suspect the birth defect actually came from his fathers side of the family to be honest with you.
Crying at the appointments with my otherwise perfect son, I prayed that he would have a normal life without the complications of my own.
All of his charts were marked with a red sticker reading “Abnormal Birth Defect/Rare Disorder.” I wondered if my lab charts said the same thing?
After the birth of my son twenty nine years ago, my OB/GYN in California suggested a hysterectomy due to my complications. I put the surgery off hoping for another child. Yes. I was fearful of another birth defect. But, the odds of the same birth defect occurring were slim.
Months later, I was back in the hospital with intestinal issues and polyps. The polyps were removed and I continued to struggle with chronic pain and cramping to such an extent that pain became part of my life. I didn’t panic and run to the hospital unless the pain became overwhelming.
On my sons third birthday, I had emergency surgery to remove my uterus. Between bouncing to Urologists for my son, I had put my own health on the back burner.
Wondering if he would have a hard time at school for being anatomically different and due to the birth defect, unable to have a circumsion, I worried for years if he would be able to have children, find a wife or have a normal life?
My son is happily married and to date, has no children. Robert and Stephanie Hafele have four dogs that are their children.
I divorced my first husband after those many years of violence at home that were often the result of doing something my mother in law didn’t approve of or saying something that had offended her. “I was just giving her advice. She has an attitude. She never puts that baby down. You need to knock some sense into her. I deserve to be respected.” No. She didn’t deserve respect. Respect is earned.
I had endured ten years of violence trying to be the perfect wife and mother and, I didn’t want to die in that marriage. Seriously.
The only thing in life that brought me any joy during that marriage was my son, my nieces and my twin sister. If only I had left sooner, I could have spared myself years of Hell.
In fact, had I left my marriage sooner, I could have spared my son seeing his mother bounced around the house on a regular basis or run down by his grandparents at family functions too.
Even my emergency hysterectomy gave her my mother in law cause to point out what a disappointment I was as a wife and mother. I would love to tell you that my exhusband gave me an easy divorce.
My ex husband hated me for not “making my mother like you. You don’t try hard enough. You could put more effort into it.”
Not having more children and needing a hysterectomy while his sister was pregnant again with her second child. My ex husband never misses an opportunity to tell me that I was a failure at having children.
While his sister, Kim looked stunning after her natural childbirth, Wendy looked swollen twice her size and wanted no pictures. Tubes and monitors coming out of both arms, I looked terrible, frightened, grossly overweight and uncomfortable.
The “no pictures” rule was set forth by me because after nearly dying during childbirth and later requiring an emergency c section surgery, I woke up in recovery to be told my son had a birth defect without anyone explaining what the birth defect was. No. I didn’t want any freakin photos!
The only reason my mother in law wanted those photos was probably to complain to other relatives how dark skinned my son was or worse, how this previous print and commercial model had “let herself go” throughout my pregnancy. My thought was screw her and her camera! I had enough shit going on already.
Ironically, my son and I were so close that even my hateful family in law resented our relationship. My mother in law used every opportunity to point out that I paid no attention to my husband after the birth of my son. She was right. I hated my first husband. I hated the slaps and punches.
For years, he wouldn’t hit me in the face but after the hysterectomy, he no longer worried about a black eye here or a bloody nose there as he screamed “go clean yourself up!”
I’m certain the constant nagging about what a horrible wife I was from his mother was part of the reason but, my ex husband was also quite jealous which led to many of our fights. Things escalated so much after the first hysterectomy that I often feared losing my job with the Dawson Agency. The bruises would fade but my broken spirit wasn’t so easily repaired.
It was after a style show that my dresser, Hahn Gilbert told me I should leave “before he kills you.” Covering up the bruises on my arms or shoulders while working as a model had become “routine” for my makeup team and also my dresser, Hahn.
Hahn was with me for fifteen years before dying of Ovarian Cancer. I miss her still. If only she had been screeened for Ovarian Cancer. Her heritage didn’t believe in medical intervention. Hahn often entertained my son at style shows while I pulled 1-3 racks of clothing. I worked very long hours and didn’t trust anyone other than my sister or Hahn.
The truth is that my ex husband and I fought through our divorce over the one thing I could never replace, my son.
I was more than willing to give up any and all assets in our divorce. In fact, I did. Signing over everything other than my car, I only wanted my freedom and my son. I could always make more money.
The custody battle raged on for over five years. My ex husband never remarried and I’m guessing his controlling and obsessive mother is the reason for that. She has him all to herself now.
I have the love of my son and whether he chooses to have children or not, my son has the love of a mother that I never had.
There are no real “winners” in child custody battles. You fight a war and it’s a war that leaves scars that never heal. The chances of me having another child flew out the window as my physician advised me of Endemetriosis and, the possibility of Ovarian Cancer. Removing my uterus wasn’t an option all those years ago, it was a requirement.
No one (that I could think of) had died in my family from the “C” word. Later, I learned that I was wrong about Cancer affecting my family. My uncle, both of my cousins and one of my aunts on my grandfathers side all died from cancer.
After the Partial Hysterectomy, my painful cycles stopped but, occasionally, I still had chronic back pain and unexplained sharp stabbing pains. I accepted that the pain was most likely due to working 14-18 hours a day and didn’t seek medical treatment. It was a mistake.
I was thirty seven years old and planning a trip to Hawaiia when I fell down the stairs of my home after a pain so sharp hit me that I grabbed my left side. At the hospital, an MRI revealed that Endemetriosis had wrapped itself around my organs and I would need emergency surgery again. This time, my doctor took my left ovary. Damn, Endemetriosis is a horrible disease. Like a bad Penney- it kept showing up.
At 43 years old while cleaning my swimming pool, the pain hit me again with such force that I fell in my backyard. My husband drove me to ER. Endemetriosis again. Another surgery took my right Ovary and sent me into early Menopause. If early menopause would keep me from more complications of Endemetriosis, it was all worth it.
I was relieved and mistakenly believed that Endemetriosis would never recur and interfere with my life again when a sharp pain in my left breast sent me back to my OB/GYN.
A large tumor was the cause of my chest pain and yet again, another emergency surgery was performed to remove it. By now I was scared of dying early.
The fear of more emergency surgeries disrupting my life haunted my husband who consistently asked me “does your back hurt?” Matthew had learned that pain was a precursor for problems.
I was forty eight years old when the choking or gasping for air began to bother me to such an extent that when my PCP told me that I was suffering with Dysphasia, I wasn’t satisfied that trying to swallow for the rest of my life was “normal.” Demanding a referral to an Ear, Nose and Throat Specialist took nearly a year.
By my forty ninth birthday, I was in surgery again for Cancer of my Right Thyroid. Terrified that it would later affect my Left Thyroid, I demanded that my surgeon remove both.
This might sound extreme but, I knew from Endemetriosis that a problem could spread and reoccur down the road.
Both my right and left thyroid were removed and it would be only later that I learned removing both was a bad idea. Your thyroid is an important organ.
My thyroid surgeon was all too happy to bill my insurance and benefit from an expensive and life altering surgical procedure.
I consoled myself that at least I would never have to deal with cancer of my remaining thyroid and/or Endemetriosis again but, I was wrong.
The Thyroid Cancer became a turning point in my life. Knowing that I might face health issues forever, I finally quit my lucrative job and we sold our home. Focusing on something that I would enjoy, I created Texas Twins Events.
I had never had a beautiful wedding. My evil mother in law didn’t think this dark skinned mixed heritage bride was worthy of such folly. My own family had no money to help me plan a wedding either.
I’ve never had a wedding dress, the flowers, the photos or the friends and family at a wedding. I could never afford something as special as celebrating at a real wedding. With my work schedule, it was far more important to be at work earning money.
Because of my own inability to afford a Life Event, my goal was to give anyone a beautiful event. Thirteen hundred families and counting later, we have.
My entire family joined me in a journey to “change the wedding and events industry one family at a time from Fort Worth, Texas!”
Six months ago, I had a busy schedule of three Prison Weddings that my sharp pain would not deter me from. Getting into my SUV to start my day, my twin sister asked if I was okay based on my grimace to find a comfortable position in the car.
It would be about five hours later at Applebee’s with my Estes Bride, Priscilla and her mother that I realized my urine was mostly blood.
Shocked since I had long ago had a Hysterectomy, my sister and I decided to get back to Fort Worth and head to Harris Hospital.
The pain was intense and after more CT Scans, MRI’s and bloodwork, I was told it was a kidney stone. I returned home to pack for a trip to California less than two days later. I have never allowed pain or medical issues to interfere with my work schedule and believe I have a strong pain tolerance.
The following day though, I was back at the ER. The pains was so intense that I was dry heaving and literally crawling to the restroom. I thought I was dying and knew that in less than twenty four hours, scheduled to be on a plane.
ER gave me pain medication through my IV as well as a prescription for Amoxi-Clav to treat my kidney infection.
The swelling on my right side was so bad that my skinny clothes wouldn’t fit and I repacked my suitcase with my guest closet wardrobe instead to accommodate my swollen back and abdomen.
On the plane, my sister and I worried that I might have to go to ER while in California because the pain wouldn’t subside. I couldn’t reschedule this trip as we were under contract to film and, I’ve never rescheduled a booked commitment in my life!
Four days of filming later, the pain finally let up a little and I felt confident that the crisis had passed. I was wrong again.
Last Friday, I had three events and the pain was back. With a full weekend of commitments, I didn’t have time for an ER Visit and decided to wait until Monday for a visit to Parker County Urgent Care for a Toradol Shot to get me through what I believed was a recurrent kidney stone.
It had been so long since I had struggled with Endemetriosis that the kidney stone pain had convinced me that it was another painful stone but, self diagnosis can be dangerous.
Parker County advised me that they believed I had Appendicitis? No blood work? Only based on the pain in my right side, the Physician scheduled me for a CT Scan at Gateway Imaging the following day.
Back in my SUV, I checked my schedule and was relieved to find that I had scheduled most of the week off as I have a full schedule this month of both Prison Weddings and Client Meetings with Pawning Planners Appraisal Appointments as well as bookings with Texas Twins Events and bookings at Bell Tower Chapel where I’m on staff at.
Alarmed that the pain had intensified, I assumed that all of that pushing around at Parker County Urgent Care might’ve ruptured my Appendix and drove myself to Harris Methodist with Cindy and Stephaney following me.
Arriving at the ER, my blood was taken and a Sonogram performed. To my shock, the ER physician asked if I might be pregnant?
I laughed and laughed about this and explained that I had a partial hysterectomy years ago and therefore, being pregnant was the one thing he needn’t worry about.
Wheeling into the CT Scan, the nurse asked if there was a possibility that I still had my Ovaries? I said no.
Due to years of health issues due to Endemetriosis, my OB/GYN had removed everything. I wasn’t concerned about Endemetriosis anymore as I felt the burning sensation of dye pumping into my IV, I thought to myself “it’s either Appendicitis or a Kidney Stone.”
Cindy and Stephaney were waiting for me and texting other family when I was wheeled back into my room. There wasn’t any panic. My IV had pain medication flowing through my veins along with medication for my nausea due to the pain.
I was relieved to finally see the ER Dr return to my room and announce “we know what’s wrong. You have a cyst on your ovary that’s causing the pain.”
Horrified, I explained that I don’t have any ovary and therefore, couldn’t have a cyst on an organ that I don’t have.
Tuesday morning at 9AM, Cindy and I were at Baylor with my Harris Release Records in hand. I made an appointment with Dr Herd who had operated on me 9 times in twenty three years for not only my hysterectomies but also, Endemetriosis.
I was calm at my appointment yesterday. Consoling myself that the silly ER Dr who believed I had an ovary had made a mistake, I knew that whatever was wrong with me that Dr Herd would fix it as he had done for half of my life or refer me to a knowledgeable surgeon who wouldn’t see something that didn’t exist on my X-rays.
Dr Herd explained to me that the suspected Kidney Stone Incident last October was most likely something else entirely and explained why he believed that the pain and blood were linked directly to my current problem.
“When cysts do cause pain, it is typically felt in the lower abdomen. Unfortunately, this can be mistaken for other disease processes that produce similar symptoms, including appendicitis, kidney stones, endometriosis, and pelvic inflammatory disease. I believe that the pain you were experiencing is unrelated to your healthy kidneys, gallstone or appendix.
Symptoms of growing ovarian cysts generally consist of a dull, constant ache in the lower abdomen, with bloating, a sense of fullness and pressure, along with nausea, vomiting or even breast tenderness.
The pain is often felt around the time of menstruation and can cause abnormalities in length of the cycle (longer, shorter, or even no period). Pelvic pain during intercourse, bowel movements and urination may also occur.
If pain is sudden, sharp and severe or accompanied by fever and vomiting, it can signal cyst torsion, rupture or other unrelated medical emergencies such as ectopic pregnancy, kidney stones, gallstones or appendicitis.
Other signs such as cold, clammy skin, fast heart rate and breathing, lightheadedness or dizziness may indicate blood loss and also indicate a need for immediate medical attention.”
A ruptured cyst and torsion were actually what had happened to me back in September.
There’s a reason you should get a second opinion. My PCP asked no questions about the Kidney Stone Incident. No new bloodwork. No new urine tests.
The truth is that my PCP has rarely ever seen me. For 17 years, all appointments are with his PA Staff. It’s time for a new PCP.
Had I not stopped going to my yearly examination with Dr Herd because I believed there was nothing in my body left for him to screen, he would have quickly realized that I had a problem.
My PCP PA had screened me for a Well Woman Visit two years ago after insisting but, found nothing. I believe my PCP REQUIRES a visit every three months for financial gain. I must take thyroid meds for the rest of my life but must also make appointments every 90 days? You get it. A money train.
My thyroid isn’t going to grow back so these REQUIRED VISITS for refills that bill our insurance $487 a pop are more than a little lucrative.
While waiting on Dr Here to call Harris for the Kidney Stone Incident labwork, I popped on over to FB to see what my buddies were up to and I saw a photo of my beautiful TDCJ Tennessee Colony Bride, Trishelle Fontenot yesterday getting her Well Woman Check Up on FB and smiled.Every woman should get this exam and after all of the issues that I had been though, I was glad that I no longer had to endure the screenings since I didn’t have anything left. Again, I was wrong.
Dr Herd had went over my X-rays and suggested “removing my clothing from the waist down for an exam.”
I had been patiently waiting and emailing three TDCJ Beto Brides and my Groom from Linda Woodman State Jail when I heard this “announcement.”
I put my phone down and reminded my physician that I didn’t have anything left to examine and asked with tears in my eyes “do I have cancer?”
If you have ever had to ask your doctor this question, you know the fear of waiting on the answer. Your blood runs cold, your hands get sweaty and you realize how precious life actually is.
My mind went wild as I wondered who would take care of my husband? My Clients? My twin sister? Son? Nieces? Grandnieces? Was I dying? How long did I have? What was going to happen to me, my family, my clients, my life?
I asked Dr Herd to leave the room for a few minutes so I could have a few minutes to mentally slap myself around and snap out of it! I never cry in front of people. I’m private and keep my feelings to myself.
Dr Herd gave me fifteen to twenty minutes to take my clothes off and get myself together before he came back into the exam room.
By then, I made numerous notes to myself about passing my businesses and clients to my other family members. I was preparing for the worst as I’m OCD and always have a backup plan in place. It makes me feel safe and organized.
I sent my dad a text after Dr Herd asked if there was any history of cancer. No one that I knew of on my fathers side or mothers side had died of cancer or had they? It was a frightening question that I couldn’t answer.
Everyone in my family died of heart attacks and quite frankly- I was afraid of having one in the examination room. I don’t do well with surprises.
After the examination, another surprise would present itself. One that I had never heard of. My ovary had grown back and, it had a large cyst on it! I was horrified that something that had caused so many surgeries had come back to haunt me again and, in menopause no less.
I’m going to add the link of Ovarian Remnant Syndrome for people like me who have never heard of it- Ovarian Remnant Syndrome- What Is It And How Does It Work?
The tests were ordered with the first blood test being CA-125. I asked what it was and thought I might have heard of it but had no real idea what it was? It’s a genetic cancer screening and yes, I was immediately terrified.
Scheduling more tests and planning another surgery, I walked back to my SUV in a state of pure shock. I waited to call my husband and sister because I couldn’t believe what I was going to have to “spring in them.” I hate surprises and bad news but, a bit of good news came out of all of this. Dr Herd found the problem and is working on a solution.
Today I’m back at my PCP and over the next month, in and out of numerous tests and screenings before scheduling surgery.
I have carefully documented tests and surgeries around my schedule. My friends from FB have been a blessing. My hero and cancer survivor friends along with my good friend, Julie Erwin have given me strength and courage to face the road ahead of me.
Like me, my husband is frightened but, optimistic. We’ve been through so many precancerous surgeries and even thyroid cancer before and I’m still here.
I’ve prayed, I’ve cried and I’ve lost sleep but, I’m prepared for what lies ahead now. I’ve accepted that it won’t be an easy path.
I’m not in control but, my calendar has been presented to my treatment team. I will not under any circumstances let me Clients down. You are a priority to me. There are no sick days in the event business and due to my treatment, your Life Events will be carried out as promised.
My clients are my friends. I’m making appointments for my grandnieces to be screened in order to protect them from the twenty five years of surgeries that I’ve endured.
I’m thankful that this issue was caught early as I have not been to my OB/GYN in four years because I believed that a screening wasn’t necessary.
Had it not been for the pain in my right side, I would have never sought treatment and most certainly never have known that a rare genetic disease had brought back an ovary or a cyst.
I’m telling you this because screenings are important. No one likes their yearly screening but, it can save your life…