This snippet of lyric has been running through my head for the last several days. These words by Bobby Scott and Bob Russell are a good reminder to me that it’s not a sprint but a marathon. (Now that you may have that earworm stuck in your head, the song is He Ain’t Heavy, He’s My Brother.)
This week was week two of physical therapy. I’m working with a second therapist named Rachel (what are the odds?). My regular PT is, wait for it, on her honeymoon (does this sound like my Rebecca?). Anyway, she, just like my Becky, is very sweet but a rigorous coach. My range of motion has definitely increased but the pain has not lessened. Some days it’s actually been worse. But it’s a step by step thing (pun intended). Fortunately for me, I can call our family PT and ask questions. Friday was the most active PT appointment and is still reminding me that I actually have leg muscles and they can feel overworked (ouch). Becky was able to suggest stretches that helped.
I think when I started physical therapy my subconscious believed I would feel better and be able to walk more. My head also knows that physical therapy, while probably my favorite medical treatment due to results, is not a cure-all. After my diagnosis in March of 2017, I scrambled to learn all I could about this disease. Then I took what I’ve learned and roll the reel of my memories of my physical history and realized I had suffered from this as far back as 2004 at the very least. Back then, I had knee and hip pain (same right hip and my left knee) along with frequent migraines. When blood tests were run my ANA results (a marker for autoimmune diseases) were very high. So they started running tests. Lots of tests. There was concern about MS. They were worried about Fibromyalgia. Was it Lupus? Even the Rheumatologist was confused. By 2006 I was frustrated and threw in the towel. Nothing we did alleviated any symptoms and no one could tell me what was wrong. At that point, I was still able to climb the stairs well enough so I let it drop. Meanwhile, my ENT wanted me to have surgery to remove a sinus cyst. The migraines improved somewhat. No reason to investigate further, right?
Fast forward to 2010. Richard had been living in Tampa for his new job for more than a year and it was time for Rachel and me to join him. He and Rebecca (in Tampa for the first 2 years of her degree) found an apartment on the bus route (a required element of a new home) and Richard wanted to enjoy high ceilings as a way to make up for moving from a three-story, 5/4 house to a 2/2 apartment. So, we moved into a third-floor walkup. This spelled disaster for my hip. By the end of our year there I was nearly crawling up to the apartment and carrying groceries on that climb was out of the question. My exercise was only ever done in a pool. I was treated for bursitis with limited improvement. I did learn a lot from the PT but just didn’t find lasting relief (ding, ding, ding, this was a clue).
Move forward to 2014. My GP was concerned as those ANA markers weren’t getting better (they seldom do). At the same time, Rebecca tells me on a trip to Universal Studios, “Mom, your gait is really bad. You need to see someone about that, preferably a physical therapist.” Between the recommendations of the two of them, I sought treatment. Physical therapy provided better results this time. I also recognized the need to get some of the weight off the joints. But still, regular exercise was problematic because my hip was so touchy. I just figured this was going to be my life as I aged.
From 2016 through the beginning of 2017 I lost 55 pounds. Yea! However, I was still walking funny. My GP, with the next round of severe hip pain, referred me to a rheumatologist. This time, I found one that picked up on clues but we played around with the diagnosis for a few months and I felt like a chemistry set with the medications he prescribed. Finally, even though I don’t have the gene marker for AS, he diagnosed me with it. First, there was a shot in the outside of my hip, next on the inside of my hip. During that one, he pulled an amazing amount of fluid from the hip – even he was surprised – said he’d never gotten that much fluid out of that joint before (and this is not a young man or a new doctor). The pain wasn’t really lessening so I started using the walker to relieve the weight on the hip. Next, the left ankle started in. Surely this is just an overuse issue as it was on the opposite side, right? Another injection and the doctor telling me that no, this was another joint which had succumbed to the AS. We added the air cast on the ankle and he added me to a drug study for AS patients.
During the intake exam for the study, he is required to poke and prod in specific spots throughout my body to see which pain points are bothering me. OMG!! I didn’t even know I hurt in most of those places but he found over a dozen spots that weren’t just tender – I flew off the table with more than half of them. Yikes!!
From that overlong history you can see this really isn’t a sprint. It took me a long time to get here and to gain the massive amounts of weight that came with it. It’s going to take a while to get anywhere along the path of better health.
There are so many days where I wake up praying that this is the day I’ll see improvement. Maybe today I won’t hurt so bad. Perhaps this evening when I come home from work I won’t be nearly in tears and exhausted from a day of dealing with this pain and limited mobility. Most of the time that’s not true. I have a good day once in a while but not even once a week. It’s really hard not to lose hope. But hope has morphed from hoping I’ll be able to travel extensively and walk wherever and whenever I want to hope that I’ll be able to move without a wheelchair and hoping that one day I’ll be able to walk around the block again. Even those hopes seem far away some days.
But our lives are filled with different roads to travel down. The song that was sung at each graduation from my high school has served me well throughout my life so far. I choose to continue to travel down the road less traveled – hopefully paved and not uphill, but not just the easy road. I know that Jesus travels that road with me and often pushes my chair as I go. But it’s still a “long, long road.” I hope you’ll continue to travel with me.
The Road Less Traveled
BY ROBERT FROST
Progress? The study directors for the AS drug study has provided me with an update on my inflammation markers and my hope for improvement on Cosentyx: “Your Sep. 26 hs-CRP was 10.6 mg/L, and the Oct. 3 was 9.0 mg/L. Still “high” but it is coming down!”
To put that into perspective the Mayo Clinic posts these ranges:
Lower risk: <2.0 mg/L
Higher risk: > or =2.0 mg/L
Acute inflammation: >10.0 mg/L