By the time I referred myself to a rheumatologist and had my first rheumatology appointment in March of 2011, the laundry list of diagnoses and illnesses had grown ridiculously long. A rundown of a few of the more frequent or strange illnesses and the most persistent diagnoses I have been given could tell you the story of my last decade. Some of them are as follows:
- High Blood Pressure
- Degenerative Disc Disease*
- Bulging Disc*
- Herniated Disc*
- Pinched Nerve*
- Chronic Fatigue Syndrome
- Proteinuria (inside and outside of pregnancy)
- Preeclampsia (during both pregnancies)
- Shingles (multiple)
- Costochondritis (multiple)
- Flu (multiple)
- Sinus Infection (multiple)
- Strep Throat (multiple)
- Bronchitis (multiple)
- Scarletina (once).
*It’s unclear to this day whether or not these four diagnoses were accurate. Although advised by multiple medical professionals on multiple occasions these were the causes of my chronic back pain, it is possible my most recent diagnosis would explain any/all of these four diagnoses. I’ve probably had some combination of these problems over the years, but they would not fully explain my chronic back pain in conjunction with other issues that have spanned over a decade. **Also, all of the above items in the list in bolded text are symptoms of my now diagnised disorder I had exhibited for years.
That’s the short list. Those are the ones I can think of right off the top of my head. There are others. Of course, there is the most recent. It’s the one diagnosis that finally seemed to make sense of so many of the issues I was having. Nothing else had ever tied things together and made it all make sense. After a physical exam, review of my medical records, and extensive testing, my rheumatologist shared what he believed I had been suffering from all that time. That diagnosis was Psoriatic Arthritis. Finally, I had a name to the face so to speak.
In the event you’ve never heard of Psoriatic Athritis or have but don’t know what it is, I’m going to provide a brief synopsis of the disorder for you. It’s a combination of information from www.webmd.com and a couple of other internet sources that provides a broad overview of the disorder along with most common symptoms. Psoriatic Arthritis is a form of arthritis that affects some people who have Psoriasis — a condition that features red patches of skin topped with silvery scales. (Or as it is in my case, a less common form of Psoriasis known as Palmoplantar Pustulosis which only occurs on the palms of the hands or the soles/sides of the feet.) Most people develop Psoriasis first and are later diagnosed with Psoriatic Arthritis, but the joint problems can sometimes begin before skin lesions appear. Joint pain, stiffness and swelling are the main symptoms of Psoriatic Arthritis. They can affect any part of your body and can range from relatively mild to severe. In both Psoriasis and Psoriatic Arthritis, disease flares may alternate with periods of remission. There is no cure for Psoriatic Arthritis so the focus is on controlling symptoms and preventing damage to joints. Without treatment, Psoriatic Arthritis can be disabling and frequently involves inflammation of the knees, ankles, and joints in the feet and hands. Joint stiffness is common and is typically worse early in the morning.
Psoriatic Arthritis can also cause inflammation of the spine (spondylitis) and the sacrum, causing pain and stiffness in the low back, buttocks, neck, and upper back. In about 50% of those with spondylitis, the genetic marker HLA-B27 can be found. Patients with Psoriatic Arthritis can also develop inflammation of the tendons (tendinitis) and around cartilage. This inflammation may lead to inflammation of a tendon at the site where it inserts into the bone. Inflammation of the tendon behind the heel causes Achilles tendinitis or Plantar Fasciitis in the soles of the feet. Inflammation of the chest wall and of the cartilage that links the ribs to the breastbone (sternum) can cause chest pain, as seen in Costochondritis. Changes to the nails, such as pitting or separation from the nail bed can also occur. There is extreme exhaustion that does not go away with adequate rest. The exhaustion may last for days or weeks without abatement. Psoriatic arthritis may remain mild, or may progress to more destructive joint disease. Periods of active disease, or flares, will typically alternate with periods of remission.
There it was. After a decade plus of feeling hopeless and lazy and wondering if I was ever going to get an answer, I finally had one. It wasn’t the best answer in the world or the one I expected, but it certainly could have been a lot worse. Just to know there was a real, legitimate reason for everything I had been going through and not some melodramatic creation in my mind, well, that was really the most important thing to me. The next question was how to treat it. I was relieved to know what my condition was, and eager to get to the “fixing it” part. That wasn’t going to come as quickly or as easily as I had hoped.
A few months into my targeted treatment, I got an unexpected phone call. I was being asked again if my husband and I could care for the boys. Their mother’s Leukemia had returned; she’d gone through a second round of brutal treatment; and she was once again fighting to stay in remission. Fortunately, it was June 1, 2011, and I was a full three months removed from my winter of discontent. I was deep into a plan with my rheumatologist to get me back on track. I felt I could handle taking the boys back in for a time while their mother was recuperating from treatment. We geared up a second time for the boys’ arrival unsure how long this “visit” would last. I remained guarded but optimistic that my condition would continue to improve and the boys’ mother could overcome the after effects of her second round of treatment and maintain the desired result.
It was a pretty crazy summer and fall. With all five children in the house again, we were definitely being kept on our toes. The summer would come and go in a flash and school was starting. Before I knew it, the holidays of 2011 were fast approaching. We had almost made it through the fall semester of school without anything too crazy happening. The boys were slated to return to their mother after the school semester ended in December. I knew I would miss them when they were gone, but admit I was looking forward to a break. I had continued struggling off and on throughout the year with the Psoriatic Arthritis as my rheumatologist continued to work on a treatment program for me. By the time Thanksgiving rolled around, I was feeling better overall than I had in a while. However, knowing that we would be less two rowdy little boys gave me a sense I would be able to rest up a little more and get a better hold of my disorder.
When the boys’ mother called me the Monday following Thanksgiving in 2011, I wasn’t prepared for the conversation we would have. There were new lab results back indicating she was no longer in remission after her third round of treatment. As she had now had chemo, radiation, and bone marrow transplants multiple times, there were no longer any treatment options. As I listened to her voice quiver while she told me she was scared, I told her I loved her. I can’t recall with all certainty what else I may have said. The conversation remains mostly a blur. I was scared for her, and we sat and we sat and cried together for a while. I couldn’t even begin to imagine how horribly it would feel to know my days were numbered and the number was so small. They’d only given her two to three more weeks to live. When she asked me if my husband and I would keep her boys and raise them, there was only one answer I could possibly give. Yes. We would keep them. Yes. We would raise them. Yes. We would do everything in the world we could to ensure they were taken care of in the best possible way we could provide. It was a daunting thought that we would soon be shifting gears yet again from readying the boys to go home to becoming permanent members of our family. At that point, the boys had been with us for the majority of the last year and a half and despite their circumstances, they were thriving. And there was also the small matter we had grown to love them. If they couldn’t be with their mother, we couldn’t imagine them being anywhere else.
There is little in life I am more grateful for than those last few weeks with Michelle. Although we didn’t get to spend an exorbitant amount of time together, she got to spend as much time with her boys as she was able. I recall one of the most emotionally draining nights of my life as I sat with Michelle and her family and we shared with the boys she would soon go to Heaven. The low sobs were almost unbearable to hear. I recall celebrating an early Christmas with Michelle and the boys. How wonderful it was they could have those last laughter and smile filled moments with her. She was able to see their new beds, new furniture, and new decorations. And I listened as she told her younger son in his new room to share nice with Annalee because she was going to be his sister. She was giving them permission to move forward into their new life. In her last few days, she was selfless enough to make sure her boys knew they needed to go on with their “new family” and she was okay with that.
When the call came that she had collapsed into unconsciousness, my heart felt so heavy. I knew it was coming but I had still kept praying for some last minute miracle that wasn’t going to come. I spent that Friday night and into the early morning hours of Christmas Eve 2011 just being there with her and her family. Her sister and I each held a hand as she took her final breath and passed from this life on to the next. And it was over. Her two-year-long battle was done. She had fought valiantly, but her poor little body finally gave out. And we cried.
There’s so much more to this story than just a few pages could ever tell. Honestly, writing a book about the events leading up to Michelle’s passing and the next eight months leading to our adoption of Tyler and Michael would be fairly easy in regards to all that was involved. There has been a lot of heartache in so many respects to what my two sons have gone through in their short little lives. None of it really matters in reference to what this blog concerns with the exception that the mental and physical stress of the situations my family was faced with during the past few years did little to improve the symptoms of my disorder.
We adopted our boys on August 6, 2012. Our family was completed on that day. I’ve no doubt in mind or heart everything I endured emotionally in several areas of my life were designed as such to prepare to mother the boys along with our three lovely daughters. I lost a lot in the couple of years leading up to our adoption, but what I gained; well, it outweighs anything I ever lost.
The Sexton Seven
August 6, 2012
Our first official family photo!
Back Row: Bryan, Kim, Annalee, Me
Front Row: Michael, Libby, Tyler