Updated: Apr 23, 2020
"Behind every chronic illness is just a person trying to find their way in the world. We want to find love and be loved and be happy just like you. We want to be successful and do something that matters. We’re just dealing with unwanted limitations in our hero’s journey.” –Glenn Schweitzer
So, how did I get here and decide to start a blog?
Over a period of years, I was increasingly symptomatic and ill. Most of my medical tests would come out normal, except for initially being diagnosed with “Epstein Barr syndrome (EPV)”. EPV followed by Chronic Fatigue Syndrome.
My initial symptoms developed over the last then years and were complex in that they were all over the place. Basically, I started out having what I refer to as a throat and sinus infection repeatedly. Then, it progressed to feeling as if I had the flu constantly. I had severe joint pain that would migrate about. I have horrible fatigue, swollen and painful glands. I started losing hair in circular patches and my scalp was painful to touch. I had rashes develop on my neck and spine and in my lower hairline. I was told that it was shingles, but I think now more related to fibromyalgia.
Later, the joint pain and hand pain were almost unbearable. I felt lower back pain and started to lose my voice quite a lot. If I started to lose my voice I knew I was getting sick. It was very cyclic.
I had my blood tested and was told that I was positive ANA with a speckled pattern. It was suspected that I had Lupus. I was on prednisone and would make all the difference for me. I had a love-hate with the medication as it caused horrible weight gain, but it is a game-changer. I was then started on Hydroxychloroquine (Plaquenil) and it was making a difference in minimizing the amount of time I would get sick.
In 2018, I had fallen into a significant flare up and had to take time off work and was ill. During that time I was referred too many specialists. I was having trouble breathing and having pre ventricular contractions. According to the Mayo Clinic, Premature ventricular contractions (PVCs) are extra heartbeats that begin in one of your heart’s two lower pumping chambers (ventricles). These extra beats disrupt your regular heart rhythm, sometimes causing you to feel a fluttering or a skipped beat in your chest. https://www.mayoclinic.org/diseases-conditions/premature-ventricular-contractions/symptoms-causes/syc-20376757.
I had symptoms where I was feeling pressure on my chest and trouble breathing and taking a deep breath. Any activity would make me worse. So, I saw the rheumatologist, cardiologist, and had a few MRI images. It was concluded that I had severe fibromyalgia, asthma, osteoarthritis, and degenerative disc disease.
In the fall of 2019, I had been back at work for a year. I was trying to manage my health issues and continue to work. I tried to hide my pain and issues the best I could, which now I realize I should not have hidden it.
I worked a nightshift and returned home feeling unwell. I woke up after a few hours of sleep with severe nerve pain in my arms, hands, legs, and feet. I tried to walk and had trouble and I knew something was very wrong. I was having trouble thinking and calling out for help. My left side was weird and my face was droopy. I managed to get my son’s attention and he got my in-laws who were over thankfully, as they were helping drywall in the basement. The pain was horrible and I was afraid, and I began vomiting. An ambulance was called and took me to the hospital. I don’t remember much of that day.
The imaging showed no signs of a stroke but it was believed to be a TIA. A transient ischemic attack is sometimes called a mini-stroke. Medline plus states, that A transient ischemic attack (TIA) is a stroke that lasts only a few minutes. It happens when the blood supply to part of the brain is briefly blocked. Symptoms of a TIA are like other stroke symptoms but do not last as long. They happen suddenly and include. Numbness or weakness, especially on one side of the body. https://medlineplus.gov/transientischemicattack.html
I have since been in a flare with considerable nerve pain in my limbs that is hard to dull. I have generalized muscular pain and weakness. Not to mention I am very tired all the time and have nausea.
That was the last night I worked in my career. It does make me sad and it’s very hard to accept, but I am going to learn. I spend my time going to my pain specialist, my family doctor, my chiropractor, and my psychologist. I am learning to be careful of my pain and abilities. I have to learn how to balance my activities and manage my pain so I can control it to some extent.
Over the years, I did have many visits to the Emergency Room for uncontrollable pain and that’s part of the reason I would like to be a patient advocate.
As I have said in the first blog, I am starting a new journey in my life where I am going to self-care. I am going to be doing some physical rehabilitation in a warm pool eventually and learn simple yoga. I was following Melissa vs. Fibromyalgia blog and she teaches simple yoga and she also has some resources for new fibromyalgia patients. Melissa has done a great job and she has given me some good insights and motivation. Thank you, Melissa. https://www.melissavsfibromyalgia.com/.
I have begun slowly moving with small yoga poses and it does seem to feel good and helps me loosen up the tension.
I am nervous and excited about this new journey. I am learning so many new things. I do miss my old life but realize I have to adjust. So follow along with me when you like. Thanks for listening.
Be well, and thanks for following my disorder’ ed life,