On Friday, November 10th, 2017 my health changed dramatically. Since then I have had, and still have, some major struggles. I have not attended church and social events and have been absent from social media. People from Heartland, A Church Connected have been asking our pastoral team how I am doing. People have asked Kim as well, some of them almost begging her to come and visit me. Here is an update on what I've been through and still have to go through.
My health has changed for the worse in a somewhat significant way in the past few months. It has been a struggle for me to maintain my positive mental attitude and pursue my purpose, which is to encourage people to live positively with and through the challenges of life.
It has taken a while and I’m excited now about what I’ve learned, and the wisdom I’ve gained. I hope it encourages you as well in some way. If one of the most naturally positive people on the planet like myself, with an exciting and compelling God-given Purpose, can get down and depressed and lose hope, even temporarily, then it can happen to anyone.
On Friday, November 10th. I was getting out of bed around 5:30 as usual when I realized that something was very wrong with my body. Every joint in my body, from my jaw to my toes, went up 1 to 2 levels of pain on my pain chart. I was very stiff and any kind of movement was much more difficult than it had been the day before. To make things worse, my right hip was at level 9 pain and I could barely put ANY weight on it. My level 9, because I have lived with pain 24/7 for 49 years, is likely level 15 for most of you reading this.
I could do absolutely nothing for myself. Getting to our ensuite bathroom felt impossible so Kim brought me a juice jug and I just stood beside the bed and peed into it. I’ve since purchased a urinal and am still using it, for now.
I was basically bedridden for 3 days. Kim went to work Friday, worried and afraid. In 11 years together, this was and is the worst she has ever seen me.
3 or 4 weeks before this happened I made one of the first mistakes that may have made things worse and I compounded that on day 2 of my new health experience. I had told my family doctor to prescribe me a different corticosteroid than I had taken for 49 years. I did this on the advice of a friend, and without consulting my Rheumatologist or family Dr. I told my family Dr. to do it, I didn’t ask his opinion and take his advice.
On Friday, November 10th I decided to take 8 tablets of that new steroid, up from 3 the previous day. In the past, during a flare-up, increasing the steroid dose usually broke the flare within 3 or 4 weeks. By 11:00 am I was able to get out of bed to sit on the couch. I still felt horrible all over but at least I could move a bit and put some weight on my right leg.
The next month was very tough and challenging, for both myself and Kim, especially Kim. She dressed and undressed me every day and had to help me with everything in every way. I was able to do nothing around our condo to pick up after myself or clean up. I even had to give up feeding our 3 dogs because I could not bend down far enough any longer to fill their bowls. I tried filling the bowls without bending over very much and the food bounced out of the bowls and some missed the bowl entirely. This made a mess and now Kim feeds them.
In early December, I saw my Rheumatologist. She took me off dexamethasone and put me back on 10mg of prednisone. She also told me that much of my pain is from 49 years of destruction of my joints and bones and that she cannot help with that. That kind of pain requires narcotics to control it and so, reluctantly, I started taking morphine twice a day, with oxy, as a backup for ‘break-through’ pain.
I had a blood test about a week before I saw my Rheumatologist and that test showed very high levels of inflammation in my body, which backed up how I felt with all the extra stiffness and pain.
Not only has the pain been bad, the stiffness caused by it has made life quite challenging. There are numerous things I cannot do now because of that stiffness, which is especially bad in my upper body. I mentioned not being able to bend over as far as I used to, and how I have had to stop feeding the dogs because of it. Another challenge is getting my pants up and down to go to the bathroom. I cannot get my pants down to my knees because I cannot bend down as far as I used to. For me that means I have been using a urinal ever since this happened.
There is enough stiffness in my left elbow and upper back that shaving is now quite challenging with bursts of pain. I have to use my right hand to force my left hand high enough to reach where I need to shave.
I need help getting any kind of shirt or jacket on or off. Brushing my teeth is challenging because the range of motion in my jaw is restricted, and also because my left hand and elbow are stiff and sore.
Throughout November and December, until Christmas, I kept working, keeping up with my daily calls and emails for Wilcox Door, my personal coaching clients and mastermind groups I lead, and Journey To Success Radio interviews. I even spoke at an event at my church, with about 125 people in attendance, where I had to be carried onto the stage, and a at a high school assembly about entrepreneurs. How I did all that I do not know. It required superhuman effort on my part and Kim’s.
Throughout November, my right hip remained at level 9 pain most of the time. It felt loose as well, and any kind of motion could set off either short, significant bursts of pain or the pain might stay for hours or a day. That hip pain was a major concern, because of level 9 pain and because it is a 36-year-old original hip replacement, and likely will need replacing one day. Then suddenly, 5 weeks later, just as Rheumatoid Arthritis can do, the level 9 pain moved to my upper back, and my right hip pain level returned to what it had been before the flare. The upper back level 9 pain has subsided and is not just stiff and sore, like all my other upper body joints.
Because I am on narcotics now, and because it is the safe and right thing to do, I am selling my car, an orange 2015 Scion FR-S, which I LOVE. That really hurts me. I LOVE driving that car.
Since Christmas, I have been getting used to taking morphine on a daily basis. It helps me feel more comfortable but I would never use the word comfortable to describe how I feel. Along with anemia from JRA, morphine adds to my fatigue level. I have to get used to that. It often comes on overwhelmingly and suddenly and I have to stop what I am doing to lay down, or avoid starting something I know I should do.
Next up is finding medication to fight the very high amounts of inflammation in my body, levels way too high for 10mg of prednisone to make much of an impact on, in my opinion but obviously not the opinion of my Rheumatologist.
I will be starting a biologic drug called Inflectra, which is basically a generic Remicade, which was the first biologic drug on the market. Biologics are classified as DMARDS (disease-modifying anti-rheumatic drugs) because they can prevent damage to joints, something which is of great interest to me. It is delivered by iv over several hours on a specific schedule.
I walk around the condo, fairly easily, with no pain or stiffness. Outside the condo I use a walker or wheelchair for safety, pain, and energy management.
Here are 5 things that have really made this time easier and even been beneficial and a blessing.
1. My marriage is AMAZING and Kim has done more than I could ever have expected or imagined during this time. It has really brought us closer in a real way. The amount of extra work required of Kim because of my increased level of disability, including not driving, has been a LOT and yet she does it so kindly and positively that she improves my attitude even when I am suffering. I cannot say I would be as good as her if our positions were reversed. I am almost certain I would not.
2. Our 31st floor condo is beautiful and having our family Dr. and our pharmacy in the same building has been a real blessing.
3. My family, especially my mom and sister Lorraine have gone overboard to ensure I get driven wherever I need to go and as healthcare advocates for me. Both of them have experience in the medical field and know, for instance, what the results of my blood tests mean. I bring them on every medical appointment now because I need help to get here and they know what intelligent questions to ask based on my test results. My memory is affected by narcotics, like anyone, and so it is good to have someone there to remember more than what I do.
4. My God-given life Purpose remains the same – to encourage people to live positively through the challenges of life. This time of challenge helps me to fulfill my purpose, by having to live it myself.
5. My streams of income are not affected. They include; rental income, coaching clients, mastermind groups, book publishing, Amazon affiliate, Solo Build It affiliate (my website building system), business development (B2B cold and warm calling for companies from home). My physical challenges have not affected my income negatively and almost all the work required to keep them going can be done from the laptop and phone in my home office.
Thank you for caring about me, especially if you read this whole article. I need you in my life and I hope I am a source of encouragement in your life.