What is a chronic illness? What is an invisible illness?
Often times our family, our friends, our coworkers, acquaintances, and even our partners do not understand what chronic illness is much less what an invisible illness is.
Not understanding one's condition(s) or diagnosis occurs so often that it leads to the isolation of the ill individual, it leads to friends and family pulling away, it breaks up marriages, partnerships and leaves one feeling lonely and depressed.
A chronic illness by definition is an illness that persists for more than 3 months. Examples of chronic illnesses are arthritis’, diabetes, cardiovascular issues, cancers, and even obesity.
Arthritis, diabetes, mental issues, chronic fatigue syndrome, fibromyalgia, epilepsy, ADD, just to name a few ”invisible illnesses”.
There is a saying all over the internet that goes something like ”you don't look like you’re sick”! And then the sick person responds ”you don't look like you’re stupid either, but here we are”! Another favorite of mine is a patient being diagnosed with rheumatoid arthritis where the doctor says ”the good news is you don't have cancer, the bad news is, you'll be on chemotherapy for the rest of your life”.
I, myself, suffer from various invisible and chronic illnesses. For many years I thought it was in my head and I ignored them. I summed it up to working too much, being overweight, not enough exercise, I was too depressed. All of these thoughts were embedded in my head and confirmed by my primary care physician.
Yes, that's right, many years of this in fact. I complained time and again during visits to my PCP, I was miserable, he placed me on different antidepressants, I lost weight, I changed jobs several times, I even went to a psychologist.
It took 14 years to figure out what was wrong with me and still today there are unanswered questions!
This is where it begins......my main diagnosis of rheumatoid arthritis and what it is......
Rheumatoid arthritis is not like any other arthritis.
RA for short is an autoimmune disorder in which the body's own immune system attacks itself. It specifically destroys the joints and can move on to destroy the main organs. It can affect the lungs, kidneys, gut, liver, heart, etc.
It causes high inflammation in the body, extreme pain, fatigue, weakness, it is a systemic illness (meaning it affects your entire system). Once there is damage caused by RA, it is irreversible. Roughly 1.5 million people in the United States are diagnosed and suffer from rheumatoid arthritis. The cause is not fully understood. Not every treatment works for everyone. There is currently no cure.
Researchers have found genetic markers linked to RA, such as STAT4, HLA, TRAF1, C5, PTPN22 and most recently I read an article linking the JAK2 and JAK3 genes (however this has not been updated on any of the main arthritis sites).
My story and symptoms began in November of 2000 when my niece was born. After leaving the hospital I forgot where I was and where I was going, I had to pull over on the side of the road to gather my thoughts. Finally, once I reached my destination, I was trying to tell my friends about my nieces birth and all I could say over and over was 811 811. My brain was talking in full sentences but that's not what was coming out of my mouth. It took a little while for this episode to clear up. I chalked it up to stress and excitement or even lack of sleep from being at the hospital waiting for her to be born. That same year I began to suffer from excruciating headaches and around Christmas time, I was very sick with bronchitis and an upper respiratory infection. Throughout the next couple of years, I would experience headaches, bronchitis, upper respiratory issues, and fatigue. I never kept track of it.
In 2003, I began to experience gastrointestinal issues. Every time I went to the hospital, there was an extensive wait. By the time I was in triage, the nurses were asking what my due date was. I was frustrated. I was so embarrassed that I failed to follow up.
Eventually, around 2006, my gastrointestinal problems worsened as did my headaches. I went back to the primary care doctor and was told the same thing, ” lose weight, exercise, get rest, you are depressed, all of your blood work looks fine”. Eventually, I ended up on anxiety medication. My depression medication was also changed several times.
In 2007, I had a very scary episode, I lost all of my motor skills. I woke up and I could not see straight, I could not walk, I could barely talk. I was panicked! I was taken to the emergency room where a battery of testing was performed. The doctors were certain that I had a stroke, they sent me to a neurologist. It took about a week before I was back to normal. The neurologist during that week ran their own tests, the conclusion was nothing, nothing at all. The only thing they found was an increase in my CRP (C-reactive protein), which measures the inflammation in your blood. They never went any further and released me back to work.
Then in 2009, my gastrointestinal issues came back and they were worse than ever. I was bleeding, I was hurting, I was vomiting, something serious was going on. Another trip to the ER, another round of tests, the cat scan showed a blockage or swelling in my colon. The emergency room doctor diagnosed me with Chrohn’s disease and referred me to a gastrointestinal specialist. The GI doctor completed a colonoscopy and found a parasite, the type of parasite that was only known to be in human fecal matter or contaminated water. My colon also inflamed. I was placed on a medication to kill any further parasites. The entire event took a toll on me, I began seeing a psychologist. I also went gluten-free. My stomach issues seemed to subside. I was working a full-time job and putting myself through online college. I wasn't sleeping much and I also changed jobs again in 2010.
In 2010 I had an emergency appendectomy. After that, bacterial bronchitis started to rear its ugly head again, two to three times a year. I ended up with pleurisy each and every time. I was so fatigued.
In 2012, I threw myself into my career and finishing college. My health issues we're fairly the same. Headaches, bronchitis, stomach issues and anxiety. PCP stated depression, overweight, working too much, change depression medication, increase anxiety medication and I thought, okay, whatever you say, you are the professional here.
In 2013, I was a total and complete wreck, emotionally, physically, in every way possible. I had lost weight, I was down to 113 pounds. I was on anxiety medications and antidepressants, I was working 60+ hours a week and I hated my job. I was drinking too much, going out too much and to put the icing on the cake, I was involved in a semi-relationship that was so unhealthy disaster could not even begin to describe it, it was just plain toxic. All of this led to a break-down. After my break-down, the fatigue worsened. I was in a constant state of fog, tired all of the time. I took a job with fewer responsibilities and fewer hours.
2014, the GI issues flared, the fatigue escalated, my arms and legs felt like elephant legs. When I would lie in the bed I felt as though my body was sinking into the mattress. I could not stay awake, I even thought at one point I had narcolepsy. Something was very wrong. I returned to my primary care doctor, explaining to him exactly how I felt. As usual, just like a broken record, he gave me the same speech over again, ”it's depression and anxiety”. I told him, I have changed jobs, I'm down to the lowest weight I have been, what else is there to do? I insisted on more detailed blood panels being performed. The blood panel results ended up revealing triple CRP (C-reactive protein, a blood test used to determine inflammation levels in the body/blood) and a low aldolase (a test for muscle damage). He insisted there was nothing to be concerned about. I completely disagreed. Immediately I went on the search for a rheumatologist. The wait was almost 6 months for the rheumatologist with the highest and best reviews in my locality. I opted to keep the appointment, however, I booked an earlier appointment with the first rheumatologist that could see me. During my visit, she reviewed my history and blood work. She diagnosed severe fibromyalgia and connective tissue disease, and she wanted to rule out any other diseases. Additional bloodwork was ordered. The new blood panel showed the CRP remained elevated but this time the aldolase was also elevated, one thing that I did fail to mention, from the very beginning my legs would often give out on me and ache constantly. When I asked for an explanation of what type of connective tissue disease I had., she could not give me a clear answer. Her response was ”there are many, I am leaning towards lupus or rheumatoid arthritis, but you definitely have an overlap”. This was truly a foreign language for me! She went on to prescribe a prednisone pack and wanted to start me on methotrexate (a chemotherapy drug), I refused the chemotherapy. The prednisone seemed to help immediately. During the wait for rheumatologist number 2, my GI issues persisted. I had another colonoscopy and endoscopy, which found H-Pylori (Helicobactor pylori), this is a type of bacteria, a germ, that lives in the body, once it enters your digestive tract (the gut), it wreaks havoc. It can cause sores, ulcers, and even lead to stomach cancer. I was placed on a 12 week round of prescription antibiotics. I felt relief for a couple of months.
In the meantime, my visit with rheumatologist number 2 started, he believed in performing bloodwork and ultrasounds to determine and diagnose illnesses and diseases. My results showed that I was seronegative (the RA factor did not show in my blood), my SED rate (erythrocyte sedimentation rate, in other words, another blood test to detect inflammation in the body) was not elevated and my ANA (antinuclear antibody, tests for autoimmune disorders and diseases that may affect the organs), was not positive. The ultrasound performed on my hands, fingers, and wrists, revealed rheumatoid arthritis activity. I opted to begin the methotrexate. Within months, I was also diagnosed with Raynaud's disease (a rare disorder where the blood vessels narrow when you are cold or feel stressed, it mainly affects extremities such as the fingers, hands, feet, and toes, causing them to turn white and blue).
The RA was getting worse. I was placed on Humira, which failed due to an allergic reaction. Then Enbrel, that failed too, allergic reaction. Then Plaquenil. I was not getting relief from the flares, body aches, narcolepsy episodes, it did not appear as though any of these medications were working. I was in constant pain, zoning out and having stomach issues. Another endoscopy and colonoscopy completed, this one showed gastritis and inflammatory colitis. I was treated for that.
(Throughout 2013, 2014 and 2015, I was also going to the emergency room where every cat scan performed clearly recognized inflammation in the colon and every ER doctor told me I had Chrohn’s disease. The GI doctors always disagreed with Chrohn’s disease).
In mid-2015, I opted for a new primary care physician. After reviewing my chart and giving and a full examination, she was adamant that I stop working. She was equally adamant that I change rheumatologists. I reluctantly took her advice and applied for short term disability and for permanent disability. This was one of the biggest and hardest decisions I had ever made. I've been working since I was 15 years old, here I was 40 years old, in the prime of my life, I was constantly seeing doctors, I had numerous chronic invisible illnesses. Was I just a hypochondriac??? People around me expressed that concern. To make matters worse, I received another slap in the face, type 2 diabetes. Total shock!!!!! How did I go from hypoglycemic to type 2 diabetic, so how did this happen?
On with the show and on to the next rheumatologist, number 3, he re-ran the same tests over and over again, including a fancy Vectra test. The Vectra (a blood test that measures RA disease activity in your blood). Guess what? My RA was in the moderate to severe range. A few months in, my blood work began to change, the SED rate rose above normal and the ANA came back as speckled, then dual, then normal again. The CRP was always elevated. My lupus tests were always negative, I remained lupus symptomatic. I had another fancy test, the Kappa Lambda (this is a test that looks for values of light chains and serum in your blood, it can determine multiple myeloma), test results came back abnormal, they were elevated. I questioned rheumatologist number 3 about all of these results, I was not given a definitive answer, always brushed off. The more he brushed me off, the more I began to research and learn online. Yes, I know doctors absolutely hate this, but how else was I going to get answers? Besides, my research helps me ask very educated questions.
In the midst of everything going on, there was little to no improvement. My chest tissue and rib cage were swollen and tender, due to RA I ended up with chronic bouts of Tietze syndrome and costochondritis. Then rheumatologist number 3 tried I Xeljanz, this is a pill, another allergic reaction. Then off of Plaquenil, it's not working. It's time to try an infusion, Remicade (a 3-hour intravenous infusion, an immunosuppressive drug, used to treat RA, Chrohn’s and several other chronic illnesses) every 12 weeks, a year of little relief, I was increased to every 8 weeks and the Remicade dosage was increased also. Based on discrepancies in the rheumatologist’s notes and my disability case, I changed rheumatologists again (2017 later part of the year). Rheumatologist number 4, he actually listened to me. He started treating my fibromyalgia symptoms, he increased the Remicade to every 6 weeks, he was very involved in my care.
In 2018 I changed GI specialists and a new diagnosis of gastroparesis was given.
This year, 2019, I’ve faced stomach flares recently. A lapse in judgment on my part by eating gluten again could be a contributing factor, interestingly enough the cat scans continue to show an inflamed colon and speculate Chrohn’s, the GI specialists disagree and continue to repeat colonoscopies and endoscopies, with findings typically showing gastritis and inflammation of the colon, no Chrohn’s. I was informed by all of my doctors that the GI issues, lung issues, chest issues, bronchitis, legs, etc., are ALL a result of my RA and the undetermined mixed connective tissue disease (overlap), even down to my headaches. The Remicade stopped working causing an increase in flares. Along with rheumatologist number 4, based on the flares and due to insurance issues, the decision was made to begin Rituxan (another immunosuppressive biologic intravenous drug). With any infusion likely there is a “ramp-up” period. You go in for the first infusion and then two weeks later another, they monitor how your body reacts prior to you going on a regular schedule.
My first infusion was horrific, 3-4 days in bed, I just knew I could not do it again. The infusion is a 5-hour infusion. Ed encouraged me to be strong and I could get through it. The second infusion, 2 weeks later was not as bad. I was only down for 1 day. I will see the rheumatologist at the 3-month mark, this will determine if I go on a 3 month or 6-month infusion schedule. I have to be very careful, I can't be around sick people, I cannot push my body too much and I must always watch my stress levels. Any little thing can throw me into a flare. Sometimes it’s difficult to know the difference between an RA flare and a fibromyalgia flare. I’ve come to know the difference is to take prednisone. If it’s an RA flare, prednisone helps. Prednisone does not affect fibromyalgia. Both require rest and downtime. Self-care is a significant factor these illnesses, low impact exercises, listen to your body, don’t push.
Once we started the blog and begun spreading the ”word” about our illnesses and plans through different social media platforms, I met Ashlynn. She has her own RA Facebook group. Ashlynn is 27 years old and has rheumatoid arthritis. Ashlynn actually experiences almost everything I experience with my RA, her story is so similar to mine. She runs a webpage and podcast. I had the pleasure of telling my diagnosis story on her podcast (release date coming soon). Please follow her and listen to her story, oh and support by ordering her products too. You can find her webpage at http://www.downtomylastspoon.com
It's very rare that I make friends or even find someone I can relate too. With Ashlynn it's easy. I relate to her so well. She is not a person that lets this chronic and invisible illness get her down, she is a fighter, she is a WARRIOR!!!!. I am so impressed by her. I am impressed by the direction which she is taking her life in and the awareness she is bringing to these illnesses, she is not just focused on RA. She allows her podcast guests to discuss a range of illnesses from Hashimoto’s disease to Cushing disease. I'm impressed with the fact that she does not let this illness take over her life, but uses it as a teaching tool.
There is ALWAYS A SILVER LINING!
My saving grace(s) and the silver linings:
Definitely, Ed because he encourages the best in me, my children, my grandchildren, my new friendship with Ashlynn, Ed’s family, my followers because they give me motivation to keep sharing our stories, and our Facebook groups.
There you have it, my RA diagnosis nightmare! The story may not fall in exact order along the read, but hey, you get the picture. Hopefully, you learned something too. Whether you have a chronic invisible illness or know someone who does, there are good days and bad days.
My advice if you are living with an illness:
Be patient with yourself. If loved ones walk out of your life it's because they don't belong there and it's a reflection of them, not you. Learn to live ”the new normal”, things are going to change. Love yourself, you did not choose your illness. You are going to have good days, I promise, reset your mind to be positive and begin sharing your experiences, it makes a world of difference. Know you are not alone. Be your own advocate, DO NOT let doctors determine your treatment plan without your input.
My advice to those who know someone living with an illness:
Their life has changed, they didn't ask for this. Be patient with them. Learn about their illness and how it affects them. Be empathetic. Learn what to say and what not to say. DO NOT say ”I hope you get better soon”. Generally speaking, chronic illnesses are not going away and that line really pisses us off. Continue to invite them to events, they may just say yes on a good day. Check on them, it's likely they will say they are ”fine”, learn the signs of when they are not. Just simply be there.
To learn more about rheumatoid arthritis you can check out the following:
Don't forget to follow and like our blog and check out our friend Ashlynn at http://www.downtomylastspoon.com