I want to start this off by saying a special thank you to my mom, Harriet. I don’t know how I would’ve made it this far without all of her wisdom and determination to help me get through this. I love you mom.
I’ve seen so many disappointing changes in today’s medical field, which made me feel like I needed to share my journey over the last 7 years. My hope is to help some other people who have been on their own difficult journey in finding the answers they need. As you read through this blog, I will share with you a timeline since 2011 up until now of what I have been through to get properly diagnosed. Please keep in mind that none of this is intended to solve anyone else’s medical problems. It is intended to show you what I have personally been through, to never give up hope, never stop searching for answers and never, ever let someone tell you nothing is wrong when you know something is.
In March 2011 I started having symptoms that were greatly affecting my quality of life. It first started with being at my son’s baseball game when all-of-a-sudden I started having tachycardia (fast heartbeat) and broke out in a rash. I immediately went to my car and turned on the air conditioner. After about 20 minutes I was better. I got back out of the car to go watch the game and then it happened all over again. One of the moms at the game asked if that had ever happened before and I said no. It felt like I was allergic to the sun.
A couple weeks later I woke up in the middle of the night and saw an open wound on my forehead along my hairline. I had seen a mark there before, but I thought I nicked myself with the blow dryer. Now the mark was open and bleeding. I called the doctor and they were able to get me in right away. On March 31, 2011 they took a biopsy and it came back positive for basal cell carcinoma. I ended up having MOHS surgery in May 2011 to remove it and then went to Hawaii 2 weeks later to celebrate my wedding anniversary. While I was in Hawaii I contracted a severe upper respiratory infection that I suffered through the entire trip and didn’t go to the doctor until I got home. Once I saw the doctor, he put me on antibiotics, but nothing was working.
After several rounds of antibiotics, I was running a constant fever. I had body aches all the time like I had the flu and I told the doctor that I hurt all over, even down to my bones. I left there with no answers and another trip to the pharmacy for more Motrin which was becoming a round the clock need for me just to get through the day.
In August 2011, my sisters and I went on a trip to Las Vegas to surprise my dad for his birthday. While we were there I was having a hard time catching my breath. I was nearly falling asleep at the dinner table because I was exhausted from trying to catch my breath all day. My sister asked me how long this had been happening and I explained for several months but it seemed to be getting worse. After being in the smoky casino for a couple of days, it exacerbated my symptoms and I ended up in the Urgent Care when we got home. I had already complained about the breathing trouble I was having to my General Practitioner, but she said I was fine. The Urgent Care doctor had me do a simple test to see what my lung output was, it was terrible. He referred me to see the Chief of Pulmonary for follow up.
After many tests I was diagnosed with Adult Onset Asthma. It was unbelievable to me. Someone who was constantly active, always able to work out, snowboard, ski, water ski, jet ski, chase my kids around, woke up one day to randomly have Asthma? It was very hard for me to digest this diagnosis. The Pulmonologist said “If I hadn’t met you I would’ve guessed based on your test results that you were an 80-year-old woman that I would be putting on oxygen for the rest of her life. This type of asthma can be reversed but I need you to give me one year and I should have you back to normal.” I was prescribed 3 different inhalers to use day and night and nothing was working.
I spent almost a year sleeping while sitting up in the corner of the couch. My husband would come check on me, worried if I would still be alive. At one point, my husband and kids were sitting on the couch with me and my son, Anthony said, “Mommy, why don’t you laugh anymore?” My heart sunk to my feet. I said, “Son, I do laugh, I just can’t laugh like I used to because I’m having trouble breathing. When you see me smiling, I am laughing, it’s just different now.” That day stands out in my mind like it happened yesterday. He was only 11 years old at the time.
Later that year I went in for another pulmonary function test and my lungs were continuing to decline. The doctor finally prescribed a medication that is used for patients with COPD (Chronic Obstructive Pulmonary Disease) and it worked. I was so relieved that I finally had a medication that could help me get through my day. When I asked him if I had COPD instead of Asthma, he said, “You don’t want COPD on your medical record.” I ignorantly said “ok.” This medication only helped me enough to get through my day, it never brought my test results to a normal level. 5 years later I went in for a follow up appointment. The doctor came in the room, sat down and said “5 years.” I said, “Yep, 5 years.” He said, “And still no change. What do you want to do?” I said, “keep doing what we’ve been doing because it’s keeping me alive.” Rewind Time- remember when he first met me he said, “This type of Asthma can be reversed in one year.” Here I was 5 years later and still no change.
October 2011, I ended up in the ER and shortly after was diagnosed with Endometriosis. I had multiple ovarian cysts over the next couple years that landed me in the hospital. By the end of October 2011, a rash had developed across my face and I was sent to Rheumatology. She said nothing was wrong and sent me on my way.
April 2012, another trip to Dermatology for another diagnosis of Basal Cell Carcinoma. At that time, I was also noticing other small red spots which she biopsied. She never paid attention to the results. She just focused on the basal cell skin cancer and told me the other results were a rare type of inflammation and didn’t need any follow up. She was wrong. That inflammation was the sign of another underlying condition.
In January 2013 I was diagnosed with Costochondritis which is an inflammation of the cartilage that connects a rib to the breastbone. By now I’ve had several inflammatory diagnosis’, yet no doctor connected the dots.
In February 2013 I was having unexplained drops in potassium which was causing my tachycardia to get worse. I was referred to the Nephrologist because my primary care doctor said that my kidneys should be regulating the potassium. I spent a year getting potassium infusions, limiting my fluid intake so that I wouldn’t deplete my potassium but my body was still struggling to maintain normal potassium levels. This can get very dangerous for the heart and can cause a heart attack.
By December 2013 I was having severe muscle and joint pain. Every single joint and muscle hurt in my body. I couldn’t do simple things like clean my own house. I would cry in the middle of the night because the pain was so bad. My husband would try to massage the areas that hurt but it just caused more pain. If I tried to workout, it felt like my muscles were torn and it would take several weeks to recover.
2014-2016- I had 2 more basal cell carcinoma surgeries, continued joint and muscle pain, rash across my face, constant low-grade fever, kidney function declining, tachycardia, inflammation in my eyes, asthma, costochondritis and feeling completely exhausted. My husband went with me to one of the doctor’s appointments and explained that whatever was going on was progressively getting worse. I had already been sent back to Rheumatology at the beginning of the year and again after a 10-minute visit she said nothing was wrong with me.
January 5, 2017 I was hospitalized and diagnosed with an autoimmune disease called Ulcerative Colitis. Here’s a little recap of what happened from January 1st-January 5th, 2017. My husband took me to the hospital on New Year’s Day. The Urgent Care doctor, ran some tests, put me on antibiotics and sent me home. By January 5th I knew something was wrong. I went back to Urgent Care and after 3 hours of tests the doctor told me that my blood count was a little low, to eat some iron but that I was fine and could go home. I did my best not to punch him in the face. I said, “Do I look like someone who takes pictures of their poop?” He said “No.” I said, “Well look at these photos and tell me again that I’m fine and that I can go home.”
He excused himself from the room and was back in less than 5 minutes. The nurse came in with him and had a wheel chair. The doctor said they were admitting me. I asked if I could go move my car because it was parked in valet and they were closing soon. He said “no.” He said, “we are experts in this situation and security will handle your car.” I was thinking WTF? I said, “5 minutes ago you were sending me home and now you’re here with a wheelchair and telling me I can’t move my car, what changed?” He said, “the photos you showed me is what changed, and you need to be admitted to the hospital.” He then had me sign paper work for a blood transfusion which was another shock.
The next day I had a colonoscopy and was diagnosed with Ulcerative Colitis which is an autoimmune disease. My husband’s first innocent question was “Is it something she ate?” The doctor said “No.” She said that I needed to start treatment right away and that they were stopping all antibiotics because I can’t have antibiotics because it exacerbates the symptoms and causes more bleeding internally. I asked how long do I have to be on the medication for? She said “forever.” I said “FOREVER?!?!” She said “Yes.” That was a very difficult moment for me. The doctors wanted to keep me in the hospital until the biopsy results came back but I asked if I could go home. After 3 doctors talked to me they agreed to let me go home. I remember going home that day and reading an article about a man who had went into remission after doing a complete diet overhaul. I cried while reading it to my husband, then he started crying and said, “I will do whatever I have to do to help you through this. I will change how I eat, I will shave my head, I will do anything.” We laughed and cried, cracked jokes and then I realized that I needed to get educated as much as possible about this disease.
A few days after I was discharged a Gastroenterologist called me to tell me that my biopsy results showed extremely high inflammation and that if they couldn’t get the inflammation under control that my colon would need to be removed in a year. That was a very ignorant statement for the doctor to make. Sure enough, I had my first appointment with him and he changed his entire tune. He also said that a change in diet would not help at all. He was wrong and later admitted that several of his patients control the disease strictly by diet.
After this latest diagnosis of Ulcerative Colitis, I called my General Practitioner and recapped the last 6 years and asked her what her thoughts were. She said that she felt that it was just another diagnosis, but it wasn’t the underlying problem. I asked if she felt that I should see Rheumatology again, she agreed it was necessary and put in another referral.
I saw the Rheumatologist within a couple of weeks, he spent 5 minutes with me and started the appointment off by saying “So why are you here?” I said, “Did you read the email my doctor sent you?” He said, “No.” I said, “Well I suggest you read it and then we can discuss why I’m here.” He read the email which stated all the concerns over the last 6 years. He didn’t ask me any questions, he didn’t order any tests, he didn’t do a physical exam, he just said, “You don’t have anything Rheumatologic going on so there’s nothing I can do.” I said, “Ok.” My daughter, Kayla and I left, and she turned to me and said, “What kind of appointment was that? He didn’t even order any tests or ask any questions.” I said, “I know, this is what I’ve been dealing with for 6 years, pure stupidity.”
After that appointment I decided to continue the lifestyle and diet changes that I had made and try to survive until the end of year when I could change my health insurance. I waited every single day for open enrollment so that I could get out of Kaiser and go find doctors who cared to help me find the root of my medical problems.
March 2018, finally the month that changed my life. I had an appointment with an OBGYN who referred me to several great doctors. One doctor was a General Practitioner. After he listened to everything I had been through he laid down the law. He said “People don’t go to Kaiser to get diagnosed, they go there to die. You need a team of specialists who offer multidisciplinary care who are going to talk about your specific medical problems and come up with the underlying diagnosis.” I started to cry. My daughter, Kayla was in the room with me and I think my heart hurt more for her to hear the seriousness of my condition, I wasn’t expecting him to be so upset. He then wrote me two prescriptions, one to go straight to the Emergency Room because I was having tachycardia and he was worried. The 2nd prescription to see a team of specialists at Loma Linda University, USC Medical Center or UCLA. This doctor saved my life.
I am now with a team of specialists at USC Medical Center who have done a great job with me so far. They have added Systemic Lupus to my diagnosis and Raynaud’s Phenomenon, which are two more autoimmune diseases. The list seems to be growing and I’m sure there will be some new diagnosis’ over the next year. They understand that I need to work and are coming up with a personal plan specifically for me that allows me to live my best life. This includes, doing my own injections from home whenever necessary to save me a trip to the doctors, scheduling blood work and communicating through email and phone as much as possible. USC used my 4,000 pages of medical records from Kaiser to diagnose me. They did do their own blood work as well, but the Rheumatologist was pretty upset that all the symptoms and tests were right in front of their eyes and I was completely neglected. I could tell at my last appointment he was very sad for me. I almost felt like I was going to have to console him. 🙂
These autoimmune diseases are a struggle every single hour of every single day and very unpredictable. I have lost quite a bit of weight from my diet overhaul. My calf muscles started to atrophy from the lack of protein that my body is able to absorb. I am extremely limited on what I can eat, and one wrong choice can send me into deep trouble. Many people with an autoimmune disease look healthy on the outside and it’s very hard for people who don’t have an autoimmune disease to really understand what it’s like. You can ask how someone is feeling or what it’s like, but it’s truly something you can’t understand unless you live through it yourself.
So, there you have it. If you or someone you know has symptoms that won’t go away, don’t give up, be persistent, don’t worry about being nice and do your best to stay positive and respectful while trying to get a diagnosis. Outside of these diseases I have a great life and it’s worth fighting for every single day. My family is my number one priority and my son has made me promise him since he was 7 years old that I will live forever and that stays with me every single day. I am fortunate to have a loving and understanding husband and a daughter who stepped in to support me in my business during the hardest time in my life. Without the 3 of them, I don’t know where I would be. They keep me chasing answers and believing in making the impossible, possible.
I want to leave you with this last thought. A doctor takes an oath to uphold specific ethical standards. That oath should be above any employer commitment. In my situation I don’t believe that the doctors that I have met over this 7-year journey have done that for me. I’d think after 7 years of tests, biopsies, many urgent care and ER visits and 4,000 pages of medical records, someone should have done their job, but they didn’t. There is not one to blame, there are many to blame. Some doctors, not all, don’t listen to their patients. They pay more attention to how you look on the outside and standard blood work. They aren’t interested in diagnosing you, they just want to write a prescription and treat the symptoms. That’s not enough. I don’t know where the medical field will be in the next 20 years, but even with all the technology, it seems like they know less now than they did 30 years ago. The amount of people getting diagnosed with autoimmune diseases is outrageous. Medicine needs to change, priorities need to change, awareness of these autoimmune diseases need proper funding to get to the answers of why it’s happening and the opportunity to maybe finding a cure. Most of the people I know went through their own hell trying to get diagnosed. Shame on me for taking so long to get out of Kaiser, but shame on them for neglecting what was right in front of them.
Until next time…
#NeverJudgeABookByItsCover #NeverGiveUpHope #LetsFindACure #TheBestIsYetToCome