Facing Forward is a series that shares the lives of people living with arthritis and other invisible chronic illnesses. The goal of the series is to see how we are similar and how we are different - and to remind us to keep moving forward because we aren't alone!
Location: Mukilteo, Washington USA
Diagnoses/Age at Diagnosis:
Juvenile Spondyloarthropathy diagnosed at age 13 (in 1994), but not broadly treated and moved into a Fibromyalgia Diagnosis with possible Mixed Connective Tissue Disease, until a confirmation in 2013 of Seronegative Akylosing Spondylitis (AS).
Raynaud’s Phenomenon age 13
Cardiovascular Syncope age 16
Endometriosis age 16
Ovarian Cysts age 16
Migraines age 18
Osteo-osteoma of Right Humerus age 18
Fibromyalgia age 22
Cervical Degenerative Disk Disease C1-C7 age 25
Degenerative Disk Disease L1-L3 age 25
Lhermitte’s Phenomenon age 29
Seronegative Ankylosing Spondylitis age 32.
How are you currently treating your conditions?
Current Treatment for Conditions: It’s taken more than two decades, but I finally have a regimen that seems to treat most of my symptoms and provide some slowing of disease progression for the AS. My early doctors used many NSAIDS (non-steroidal anti-inflammatories) which compromised my kidney function to the point where I can no longer take them without serious kidney complications.
I also have allergies to Sulfasalazine and Methotrexate, so my options are a little limited for the treatment of the Ankylosing Spondylitis. Currently I have two weekly injections of Enbrel 25mg SC to slow the disease progression.
For pain and treating additional symptoms of my multiple diagnoses I take a low dose of Morphine Sulfate ER daily for chronic pain, Diazepam 5 mg at bed and at upon waking during night to aid sleep, Clonidine 0.1 mg daily to maintain slow and even heart rate, Tizanadine 4mg mostly at bed, but also throughout the day as needed for muscle spasms, and Intranasal Ketamine 10 mg up to four times per day for breakthrough pain (between infusions). There are lots of other PRN (or as needed) medicines I have on hand for migraine pain, infections, nausea, but I don’t count those as treatment medications. In addition to daily medicines, I use a TENS Unit over my lumbar spine for the pain associated with the degenerative disk disease.
I’m also part of a Ketamine infusion program at Seattle’s Swedish Hospital for pain control. I’m currently on a treatment plan that calls for two days of infusions once every three months. This program has made the biggest positive impact on my conditions, allowing me to significantly decrease the daily medications with the highest risks, and to feel good; though it’s been challenging to get regular scheduling from the hospital team.
Along with medicines and medical devices, I’ve found that ample sleep on a specially fitted bed/mattress is extremely important. After having a Tempur-pedic mattress for over a decade, my husband and I moved to adjustable base beds. The change allows me to sleep with my body in different positions based on what sites might be flaring in my body, without the issue of having springs or coils putting pressure on pain points. This is something we just made the change to a couple of months ago, and it’s made an incredible impact. If you are having trouble sleeping, I strongly consider reviewing your mattress and it’s support system. Adjustable bed foundations have gotten much cheaper and provided noticeable relief!
Staying mobile is also extremely important. I have a dog, who is trained for service, who needs exercise. We take short walks twice a day. I also have an in-home rowing machine that I use four days a week, more if I can tolerate it. For a long time it was counter intuitive for me to be active, and it’s still hard to work on while you’re in pain, but I find it is incredibly important for your body and mind to be active.
What are the biggest challenges you have faced since your diagnosis?
I was young when my condition started, after a traumatic fall. Since my medical issues began in earnest while I was still a minor, many of my medical decisions were made without my knowledge. I didn’t even know about my J. Spondy diagnosis until I was going through my medical records for my disability hearing in 2012, nearly 18 years later.
The biggest challenges come with knowing my symptoms and disease progression could’ve been different, had I known the extent of my illness and been able to act on it. It takes a lot to move forward from that. For me, the diagnosis has been the easy part. Struggling through twenty years of symptoms and surgeries without an answer was extremely difficult.
Then there are the challenges that come with being a “professional patient” and a mother. Trying to balance your own health and keep a family running and healthy, after losing the ability to work is also difficult and can be extremely overwhelming.
What are your favorite tips and tricks for managing everyday tasks?
Coming up with a “common language” in our family was essential to running things smoothly. After reading Christine Miserandino’s “The Spoon Theory,” we use “spoons” to describe how much energy something takes or how many chores we have around the house and how much we can do without running on empty. A common language works in our family, and it helps us to plan ahead. We plan ahead with school clothes, meals, after school activities, doctor’s appointments - anywhere we can.
Our family works to get together on Sunday to review the family calendar, where we keep all dates and engagements for all family members. Having one calendar is so much easier than getting school project surprises or meetings mixed up.
I think it’s also important to ask for help when you need it. I’m not always great at that, but I keep trying. I think it’s also important to know what you’re good at and what you need help doing.
How do you manage to keep facing forward every day?
You’d think after more than 20 years I would have an easy way of facing forward daily, but it’s something I struggle with. I think most people would find it hard to always look on the bright side.
That doesn’t mean that there aren’t things to help keep you focused on the good. I earned my Associates Degree just before my 18th birthday. I always worked, and identified as an earner, which made moving to disability very difficult mentally.
When I could no longer work, I had to find ways to keep my mind sharp. One of the things I do to stay positive is to keep learning. I volunteer when I can at my daughter’s school as an art docent, so learning new things is essential for me to keep moving forward in teaching children about art. We live in such a big world, yet sometimes it is easy to be pulled into the details of our diseases. I find that continuing to learn keeps that big world open. I keep learning and I teach what I can to others when I am able. I wouldn’t be able to do that without the support of my family and friends.
Also, humor! It is essential. Being able to laugh, even in the hardest of times has been one of my greatest assets.
If you could go back to diagnosis day and tell your past self one thing, what would it be?
So many different diagnoses, so many days, but my Seronegative Ankylosing Spondylitis diagnosis came after struggles with infertility and finally having my daughter - it was finally knowing what was wrong after more than 30 surgeries and 20 years of mystifying doctors. If I could go back to diagnosis day I would tell myself that things are going to be hard, but remember that you can do hard things.
I would remind myself to look back on all the days, good and bad, tell myself there will be more days, good and bad, but that my track record for making it through those days has been 100%, and it’s not time to stop that streak.
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