PRESS PLAY > CROWDER – RUN DEVIL RUN
As I prepare for my second try with Rituxan, I cannot help but think about everything I have been through over the years, the posts I have shared in one year with you all, and the changes that have taken place.
Let’s talk about the process of infusion preparation these days. I have learned so much about my body since failing the second Rituxan treatment.
Roughly Four days before the infusion, I begin by closely monitoring any caffeine intake (I do not drink coffee and rarely soda), no tea for me if we decide to go out for breakfast, lunch, or dinner! I am on strictly drinking water, Powerade, or Gatorade. Side note, The nice thing about Powerade and Gatorade now is that they come in “lower sugar” and “zero sugar”. That’s a plus, being a type 2 diabetic (in recovery). I have a vein in my hand that I watch because it has recently been the “go-to vein” for my infusions. If it is nice and plump, I know I am drinking enough. If it is hiding, time to drink more.
Two days before my infusion, I amp up to double the fluids; this is misery, I can only hold but so much liquid. We will not discuss the trips to the restroom, ugh! Then there is the day before, it continues.
On the day of, I pray to the “Vein God’s” that the infusion nurse can get the vein on the first try. Just kidding about the “Vein God’s”; I only pray to God and Jesus!
I know that if there is trouble with my veins going forward, without a doubt, I will need a port. I have come to be okay with that. I have fought it for years. Knowing that for the rest of my life, I will be on an infusion of some kind and vein access is necessary, a port will make it easier for not only myself, but it will also make it easier for the nurses.
So that is my “infusion preparation routine”. Hydration!
My Original RA Story – Posted 2019 (With Updates 2020)
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 primary diagnosis of rheumatoid arthritis and what it is……
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, possible 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 terrifying 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 sure 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—yet another trip to the ER, a round of tests. The cat scan showed a blockage or swelling in the 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 was also inflamed. I was placed on medication to kill any other 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 an 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 somewhat 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 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 bed I felt as though my body was sinking into the mattress. I could not stay awake; I even thought 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 meeting 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 conditions. Additional blood work 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 always. 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 indeed 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 blood work 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), this blood test is to detect inflammation in the body) was not elevated. 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 Reynaud’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 were 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 most significant and most challenging 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 continually 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, on to the next rheumatologist, number 3, he re-ran the same tests over and over again, including the 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 average, and the ANA came back as speckled, then dual, then average again. The CRP was always elevated. My lupus tests were still negative, I remained lupus symptomatic. I, 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.
Amid 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, which is an immunosuppressive drug. Used to treat RA, Chrohn’s, and several other chronic illnesses). I was scheduled every 12 weeks. After a year of little relief, my infusions were increased to every 8 weeks, the Remicade dosage increased as well. Discrepancies arose in the rheumatologist’s notes and my disability case. I decided to changed rheumatologist 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.
In 2019, I faced stomach flares. A lapse in judgment on my part, eating gluten 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.
With my 4th rheumatologist, 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 before 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 healthy, and I could get through it. The second infusion, 2 weeks later, was not as bad. I was only down for 1 day.
As I hit the 3-month mark, the nurse could not successfully find a vein; the choice was made to go on Rinvoq, which worked for 4-5 months; however, the side effects were very challenging and outweighed the benefits.
Then it was on to Actemra (I will give more detail in another post). Not so successful. So with a new rheumatologist and new diagnoses of Sjogren’s and autoimmune vasculitis, we are going to give Rituxan another try. If I need a port, so be it.
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 challenging to know the difference between an RA flare and a fibromyalgia flare. I’ve come to see 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.
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 daughters (in-laws), my grandchildren. My friendships with the Smile Group, Ed’s family, my followers, and subscribers because they give me the motivation to keep sharing our stories and our Facebook groups. I have a tiny circle, but these are the people that check on me regularly. These are the people that see how I feel each day, these are the people that follow up with me before and after my doctor’s appointments, these are the people that let me know if they have the sniffles in case I want to visit. These are the people that genuinely care about my health and well-being! That speaks volumes. I am thankful for these individuals; they are selfless because Ed is not only my partner, he is my caregiver in times that I need care; his parents and my children and are my checkers and cheerleaders. My children and daughters pray for me as do some of the lovelies in my Smile Group. My Smile Group friends reach out to me if they have not heard from me in a day.
I do not need attention for my illnesses; however, knowing that I am not alone in this battle helps. So thank you to my support group!
Most of all, I am thankful to God!
There you have it, my RA diagnosis nightmare! The story may not fall in exact order along with 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.
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COLORFUL CHAOS THE JOURNEY 