Today I’m taking a break from the business how-to items to explain in more detail the changes in life at home that led me to move away from the corporate world to start my own business. This could take a while, so hang with me
Medical conditions are tough to understand. If you don’t have a particular ailment, all you know is what you hear in the media or from other people. Sometimes the information is good, other times it is very bad. You can ask questions, but if enough people ask the afflicted person the same questions, it can be very draining for them. My wife has a wide range of ailments, some of them being extremely complex. This post is an effort to explain the long list of chronic conditions as well as the more recent complications.
We’ll start with cerebral palsy. This is a birth injury (not a disease) where the baby being born is deprived of oxygen during the birth process. The longer the deprivation, the more severe the CP. The baby can have a range of limitations, from muscle spasms, to loss of motor function in 1 or more limbs, to loss of all motor function including speech. AnJanette was born with a fairly mild version, having very limited muscle development in the lower half of the body, which caused her to have to walk on crutches and sometimes using a wheelchair, and some neuropathy (nerve pain). Nothing above the waist was impaired. Over the course of time, the spasms and neuropathy became more lengthy and intense. As she approached age 30, one doctor recommended a rhizotomy – a surgical procedure to sever nerve roots in the spinal cord to relieve the pain and spasms. The procedure was a colossal failure. Instead of relieving the nerve pain and spasms, they grew much worse. The crutches were retired, and she moved permanently to using the wheelchair. Along with this, her left hip began to degenerate, adding to the pain and further limiting her mobility. This was her state when we were married on July 22, 2000.
Things held steady for several years, but the hip continued to degenerate. To deal with the spasms, a medicine pump was installed in her abdomen, which contained baclofen, a muscle relaxer. The medicine is liquid form, which comes from the pump through tubing to the spinal column. The pump is a computer with a port to inject medicine and is about the size of your car’s gas cap. The pump can be programmed to run a little medicine or a lot, depending on the severity of the spasms. Depending on the dose, you then return to the specialist every 1-6 months to get it refilled. This is NOT cheap – about $2,000 if you are still meeting your annual health insurance deductible. But it is quite effective. Some outside factors still keep spasms coming. Extreme humidity, bitter cold, wild swings in temperature, and prolonged time sitting up can all bring about more pain.
As she reached her 50s, the degenerating hip was causing all kinds of problems. Mobility was getting more limited, and getting from bed to the wheelchair was getting more difficult. Further complicating matters was a bout with pneumonia, which caused an alarming weight loss. She was down to 82 pounds, a dangerous level even for someone who is only 4’ 10”. Regaining the lost weight proved to be a very big challenge.
Throughout the year 2017, I grew increasingly frustrated by my inability to get a promotion. The desire to start my own virtual assistant business, which I had been entertaining for years, began to increase. I began to do the background work on what it would take. I also moved through the qualifying process for my weight loss surgery, which was scheduled for November 28.
A few days before my surgery, AnJanette fell while transferring from the bed to her wheelchair. One of the brake locks was disengaged, and when she leaned on the chair, the unlocked wheel moved. She fell backwards and hit her head on the mini-refrigerator beside her bed. She had tripped and fell a few other times, and she would simply pull a blanket down from the bed and cover herself and wait for me to get home and get her up. This time, having hit her head, she was feeling a bit worse than usual, more sore, and stayed in bed longer. As my surgery approached, she was having more mobility issues than normal. She headed to her sister’s house while I recovered from my surgery. My recovery went lightning-fast, as it always does from major situations. She was getting worse. She had major pains and weakening in her arms & hands. In early December, the pain in the arms got bad enough that we went to the emergency room. It was discovered that the fall bruised her spinal cord, and some scoliosis and spinal stenosis – a narrowing of the spinal column that puts intense pressure on the bones and nerves in the spinal column. Surgery was recommended, but she chose to see if rehab and physical therapy could correct the stenosis. Some time in the rehabilitation hospital yielded some good progress. The hospital recommended some time in a skilled nursing facility before a return home. Additionally, the process to acquire a motorized wheelchair began, because the stenosis had left her right side so weak she would no longer be able to push herself in the manual wheelchair.
While in the nursing facility, we had some lengthy discussions about what had to change when she came home. With her no longer being able to transfer from bed to chair by herself, it would not be feasible – or wise – for her to be home alone for 12 hours a day while I was working (I was on a 10-hour, 4-day-per-week work schedule). Now, it seemed, was the appropriate time to launch the VA business. I would have to cash out my pension and 401(k), take the IRS penalty, and use those funds to keep us afloat during what was sure to be a slow time ramping up.
Now, back to the nursing facility. For those of you reading this that don’t live in North Carolina, here’s some critical information: North Carolina’s nursing facilities suck. Really, really suck. Among the worst in the world. You can regularly read in newspapers about nursing home patients being treated like animals, criminals, or not being treated at all. There was a story in the paper a couple of years back where someone in a nursing home was sitting in a recliner in the recreation room and died. He sat there for almost an entire day before anyone checked on him. The place AnJanette went to wasn’t too far off from such terrible places. After 3 weeks, she was discharged. Once home, we quickly found out that all the progress made in the rehab hospital had vanished.
Then, a new wrinkle appeared. She couldn’t keep food down. We ended up going back to the hospital where a tube was inserted to remove a tremendous amount of stomach acid. After another round of tests, it was determined she had 2 additional problems – an ulcer, and Superior mesenteric artery syndrome, or SMA. This is a digestive condition that occurs when the duodenum (the first part of the small intestine) is compressed between two arteries (the aorta and the superior mesenteric artery). This compression causes partial or complete blockage of the duodenum. The usual result is a massive buildup of acid in the stomach, which will lead to vomiting in most cases.
She then underwent 2 surgeries, one to address the ulcer and another to address the stenosis, which had not improved since it was first discovered. Then it was back to the rehab facility, where she again made some great progress. In mid-May of 2018, she finally came home for good.
It has not been easy. Her right side remains largely unusable, while the left side seems to be coming along fine. The SMA is a real bear. There is a list of foods and beverages that are known to trigger it, but it’s a total crapshoot. One week she’ll consume something on the list and nothing happens. Then the next week she’ll have an attack when she didn’t consume anything on the list. It really is a guessing game.
Leaving the old job to work as a VA from home was clearly the right call. No way she could survive me being gone all the daylight hours. With my corporate insurance policy gone, we’ve been working to get her on Medicare and Medicaid, which is about as smooth a process as trying to pick up an iceberg with tweezers. I wish I could have everyone that supports the idea of universal health care come to live in my house for a week. They would never advocate for that ever again.
Pretty impressive, right? And I didn’t even talk about my health issues, which there are a few. But suffice it to say that even with all that is going on, we’re still confident that the new, developing life we are now building will be the best thing for us.