My Body - My Enemy

In 2013, my health journey took an expected, life-altering detour. I am a mother to three healthy children and now a proud Grammi of a precious grandson. I've been a single mother most of my adult life because of poor choices in partners which means I've been the parent who has done everything with my kids. I have always loved the outdoors and been active. The summer of 2013 all began to change as my feet and ankles swelled to the point I could not wear shoes and it hurt to walk, and I began to have sharp pains in my pelvic area.

Fast forward to a little more than a year ago, June 2017, when my son Chris pushed my wheelchair into the hospital for the first of two surgeries I hoped would restore my mobility and ease the excruciating pain I’d learned to live with. I couldn’t walk, couldn’t sleep, and couldn’t even take care of and dress on my own. The stabbing pains took away my quality of life and I was terrified about where my future seemed to be heading.

My journey to 2017 was a long and complicated one. My primary care doctor said I was getting older and had some arthritis. After a visit with my gynecologist, I had surgery to remove adhesions from a previous hysterectomy. The pain and stiffness continued to get worse so I decided a natural approach with an integrative medicine doctor might help, and at about the same time I had my first appointment with a rheumatologist in early 2015.

I tried a natural way first and opted for several tests, from genetics to food sensitivities, to avoid the traditional medicines that have so many caustic side effects. Gluten-free foods became a staple in my home and every day I swallowed a handful of supplements the doctor recommended to help combat my ailments.

At the same time, the rheumatologist was evaluating my issues through bloodwork and x-rays. At that point, I didn’t really have anything show up on my x-rays and my bloodwork was normal other than inflammatory markers were high. He prescribed Plaquenil and steroids, but I continued with my natural remedies until summer since my pain was getting worse.

Late summer 2015 I had the first appointment with an orthopedic doctor after experiencing a Jones fracture in my foot. Six months of casts, a knee scooter, and finally a boot, I was walking on my own again but they were concerned when I complained about the pain in my pelvis. They ran new x-rays and the surgeon determined I needed two hip replacements – we opted for a conservative approach with an anti-inflammatory medication and physical therapy, but I also continued the steroids my rheumatologist prescribed along with a barrage of other medications in hopes I could push off the inevitable. What concerned me the most was the rate of deterioration in my hip joints from early 2015 to this point.

The years from 2015-2017 are a blur in my mind since I think I was doing my best to mask the pain and just survive. I could no longer walk and shop with my daughter, stairs were more of a challenge than I could bear, sleep was fleeting since it felt like knives jabbing in my groin when I tried to rest. Life was no longer fun and I was much too young with so much more to do, so I made an appointment with the surgeon in January 2017 to start the process for hip replacements.

My mobility continued to diminish during the six months leading up to my first surgery to the point I could not walk at all without help. And I was in pain all the time, whether standing, sitting, or laying down. The steroids I’d been taking to try to save my joints were destroying them as well as my health and were making me huge! Without my children, I don’t know what I would have done to survive. We all tried to make light of the circumstances, but I knew things were serious. To make matters worse, I no longer had a job and my savings were running out quickly. I had to get myself back to a functioning, mobile adult or learn to depend on others for the rest of my life.

I chose to get ME back and focused on that goal for the next six months. My surgeries were in June and September of 2017 with three months of physical therapy each time. There was a lot of prep work that went into each one, from the joint replacement workshops to the pre-op appointments and testing. I was terrified as my son wheeled me in for the first surgery but I knew I had no choice if I wanted any chance at a somewhat normal life, whatever that is.

As I laid in the prep area, my children and father visited and kept my mind occupied until the medicines helped me relax. I don’t remember much else until I was in recovery, and at that point, I still couldn’t feel my legs thanks to the spinal I received. As feeling came back, they kept me comfortable with pain medicines until I could get to my room and they got me up to start walking. It wasn’t pretty, but I was walking!

Recovery involved lots of exercises and visits to our city’s park to walk – first with a walker, and then with walking sticks. The surgeon lengthened the surgical leg in preparation for the second surgery, so I started wearing a lift in my shoe to balance out the lengths. I still had a limp but nowhere the hobble I had before. Unfortunately, the more I walked to help one leg recover, the quicker the other leg deteriorated. Soon I was back in the same place I was before my first surgery, but with the other leg.

The second surgery seemed more painful than the first with more blood loss leaving me extremely anemic. My gait also was terribly off with my foot turning in at an unnatural angle. My mood soon reflected my struggle and I wondered if I would ever get through this.

In the midst of the surgeries and recoveries, my daughter married her boyfriend of eight years in August 2017 and my son married his long-time sweetheart in October 2017. It wasn’t long after my daughter returned from her honeymoon that I found out I also would be a Grammi!! In addition to helping care for me before and after the surgeries, my love for them kept me going and pushing for total recovery. I had too much to live for to end up disabled!

As the year began in 2018, I felt the best I’d felt in a very long time and was walking well, but I still didn’t have a job. Money sources had virtually dried up and I had to find something to support my son and me. Some weeks, I passed on meals to make sure he had something to eat. I dug change out of every place I could find to put a little more gas in the tank. I kept the thermostat at 65 degrees and we bundled up.

I finally landed a job that started in late February that was below where I wanted to be, but I was grateful to have an income again although I can’t remember the last time I had a job that was just a job and not something on my career path. Still, I put everything I had into the training and learned what I needed to be successful until my health decided it was time to show me who was boss.

Two weeks into the new job, I got sick – horribly sick – but since there weren’t sick days for new employees and they had a very strict attendance policy, I sucked it up and was never even late for work. I noticed in the shower one morning that I seemed to be shedding more hair than normal, but figured it was stress or something. Over the next 10 days, I lost all of the hair on my head, and then all over my body. I had no eyebrows, eyelashes, nose hair, or pubic hair. Completely bald everywhere!

Once again, I headed to different doctors. Some thought I’d been exposed to something toxic and others tested my heart for some reason. A new rheumatologist ran some more tests and diagnosed me with lupus, rheumatoid arthritis as well as alopecia universalis.  Why does my body continue to attack me? Is there any part of my body that is safe?

I've now also been referred to a hematologist because of blood issues, including monoclonal gammography of undetermined significance (MGUS) which is an abnormal paraprotein that should not be there and could lead to multiple myeloma. So I'll be tested the rest of my life to make sure the levels aren't rising. I'm also seeing a urologist because of problems with my kidneys, but I guess that is to be expected with everything my body is going through and the medications I am taking to try to stay healthy.

My love for my family and my faith in God continues to bring me through these times, and there are definitely more good times than bad. Sure, I have some bad days but doesn't everyone. I chose to live each day to the fullest because tomorrow is never promised to anyone, even people who are healthy.

I plan to live life to the fullest! In fact, last summer after visiting the same mountains in North Carolina for the past three years with my son Chris and admiring a peak I could not climb until now, we took the plunge and made it to the top of Table Rock Mountain along with hiking other scenic areas now that I am able.

Along with my renewed mobility, my hair is slowly returning thanks to the side effects of the medication I take for my RA/lupus. Within six weeks of beginning the treatment that I expected to benefit my joints, I started seeing fine, light blonde hair sprouting from my once completely bald scalp. Growth has been slow, but I now am able to sport a short pixie haircut and I feel blessed since the doctors were unsure if I would ever have hair again. Hair is returning to the rest of my body as well and I am beginning to look 'normal' again, with eyelashes and eyebrows!

Prayers continue to take me through this journey and my faith is stronger than it ever has been. I am enjoying life and especially enjoying my family - I am beyond blessed in so many ways.