As I’ve introduced before and teased in my last blog post, I’ve been attending an intensive 10-week program at Mary Free Bed Rehabiliation Hospital in Grand Rapids, MI. To learn more about the basics of the program, read here.
The program incorporates nursing, medical, physical therapy, pain psychology, and occupational therapy. I’m about 2 weeks in now and have seen all members of my care team. I’m definitely excited, a little overwhelmed, but I’m trying to stay optimistic and do everything that is asked of me. I know it will only make me feel better and keep me healthier in the long run.
Since this is the first time I’ve talked in detail (other than introducing the program), I’ll go through my experience and take aways thus far.
Nursing: This part is usually just a triage. Talk about any changes, any medication updates, and taking vitals. So far so good there.
Medical: So far I’ve seen this as a touch base with the physician. Are my medications working okay? Should we have a goal to get off of any? Do I need refills? What are my goals of this program. It’s been preliminary so far, but I anticipate having more specific conversations as we move forward.
Pain Psychology: I’ve enjoyed this portion of the program. I’ve been going to therapy for years now, and I’m conscious of the fact that I’m a talker and it’s how I work through things sometimes. This is slightly different because the goal is to create this healthy relationship with my pain, as well as use techniques and exercises to bring awareness into my mind and body. So far, we’ve chatted about my goals, and things to focus on in my life for managing stress and work, etc. We’ve also practiced and worked on mindfulness and breathing exercises. These are challenging for me because I’m a stressed and anxious person usually. But I’m working on it. The biggest immediate benefit I’ve seen is that during the exercises the ball of anxiety in my chest and stomach seems to loosen some. So I’m excited to see more options and progress with this moving forward.
Physical Therapy: To me, this is one of the most important parts of the program given that I have 6 different chronic diseases, not just Fibromyalgia by itself. At the evaluation, I wasn’t necessarily surprised per se, but a little caught off guard about my range of motion and flexibility. As most of you know, my main disease is Ankylosing Spondylitis, an autoimmune arthritis of the spine. At some point in my life, my entire spine will fuse. That’s literally what Ankylosing means. Obviously that’s not ideal, but it’s inevitable. What I can control is how it fuses. If I can build up muscle and correct my posture enough to stay straight up and not slouch, then my spine will fuse that way. If my spine fuses and it’s in a slouched or poor posture position, there’s a far greater chance of complications like pneumonia or heart issues. This occurs because the rib cage doesn’t have enough space and there is decreased lung function. So clearly, the goal is to fuse straight and strong. Right now we’re taking baby steps. Arching backwards about an inch or two for 10 sets to try and loosen how stiff my spine is, while not going too far because that could trigger more inflammation. Also pelvic tilts will help with abdominal muscles and lumbar flexibility. Another exercise is walking 15 minutes, 3x per week. The end goal is 30 minutes of exercise, 5x a week. To start, we did a test on aerobic ability and capacity. My resting heart rate is kind of high (could be because of anxiety and stress), so we wondered how well I would be able to get my heart rate safely higher. But it went okay. Long story short, my age should be at about 155 BPM. For me to hit that, I just have to walk 2.8 MPH. I know it doesn’t seem like much, but it will make a world of a difference. And it’s really not about quantity; I’m not a gym rat or a bodybuilder. It’s about quality. This will help all 6 of my diseases actually. But we have to go slow. My body is finicky and sensitive, basically.
Occupational Therapy: Last, but certainly not least, I’ve gone through a couple sessions with the OT. This is extremely important for me because of the nature of my job. I’m sitting for almost my entire day and work in front of a computer or on my phone. This can wreak havoc on all of us, but especially on my spine and pain levels. Because my spine is slightly collapsed in the lumbar portion, and I have a tendency to sit and slouch, it can be very painful for me to sit for a long time. Or to sit at all. Anyway, we’ve worked on how to adjust my chair, put something under my feet, put something under my wrists, use support at my lower back, adjust my monitors, and more. I think this is going to make an enormous difference. Just testing it out during my appointment was crazy. I immediately felt so much better and pain free sitting there. I’m excited to do the adjustments to my office this week.
That’s about all I’ve experienced this far, as I’m still at the very beginning. But I’m so proud to live in a city that has incredible medical facilities. This program is amazing and I hope that other rheumatologists are referring their patients to the program for better pain relief and, ultimately, a better quality of life.
Sometimes it feels as though any options I have are just the lesser of two evils. That may be the case, but I feel like I have to accept that in order to make real progress. I’m a work in progress, as are all of us as humans. My health has very regularly been one step forward and two steps back. But I just have to focus on that one. Quality over quantity.
Stay tuned for a Periscope live stream this week. I want to know your questions! What do you want to ask me, or your doctors? Sound off in the comments!
As always, I so appreciate all of you. I try to remain 100% transparent for YOU! We have to raise awareness, so I’ll be as blunt or loud or open as I need to be to make our community known and to help others.