Tag: Sacroiliitis

Chronic Illness, Loss, & Grief

Chronic illness is a journey of grief. Grieving my old body. Grieving so many losses. Illness has taken a lot from me. But right now the focus is shoes…

I love shoes. I’m not really sure why or when my obsession started. It could be because the doctor my parents took me to as a little kid said I was born with flat feet and then I was forced to wear ugly orthopedic shoes for years and years. Ironically now my arches are too high. But that’s another story… We all have obsessions or favorite things I guess.

About three years ago when we put our house on the market, I gathered up all the beautiful shoes I could no longer wear, and put them in a bin to donate. But truthfully I still couldn’t let go of them. I was still holding out hope that I would stumble upon a miracle treatment for all my chronic conditions and I would somehow be able to wear them again. So instead of donating, I put the bin in our storage unit where my shoes sat for about a year while I moved on with my life. I didn’t have much time to think about them.

But… then the day came for our first storage unit clean out. And I discovered my shoe bin and the flood of emotions that came back with it. And I found myself sobbing outside our tiny storage unit. Sobbing not just over the loss of shoes – although that was a big part – but also over what they represented.

When I was first given the diagnosis of psoriatic arthritis, I was hopeful that I would be one of the lucky ones. One of the ones that found a “miracle” treatment – a “magical’ biologic that would make all of my symptoms disappear for years and years. But that just isn’t my story. Instead over the years I’ve kept accumulating more labels and diagnoses and more treatments. Restless leg syndrome, ulcerative colitis, psoriatic arthritis, and related things: cervical stenosis, sacroiliitis, achilles tendinitis, plantar fasciitis, chronic pain syndrome, etc. And those are just the ones that keep me from wearing my beautiful shoes.

My current goal is to not remove symptoms entirely but to keep them from progressing and to keep my body from quickly rejecting effective treatments. Not exactly the “miracle” I was hopeful for. So there I was sobbing. Sobbing over finally saying goodbye to my shoes. And sobbing over the death of hope in a “miracle” treatment.

Grieving is not just about losing loved ones to death – although I’ve had more than my fair share of that over the last few years too. Grieving is about loss of any kind. Grieving anything that was important to a person – people, shoes, or hope. I’ve lost my hope in a lot of things recently mostly because the lovelessness of others combined with chronic illness has honestly left me feeling a bit empty inside. But I haven’t given up yet. And I’m still searching for hope – just not in shoes, “miracle” cures, and unloving people. Those things will just keep leaving me empty. But hope in other good and beautiful things. I’m working on it…

There are a lot of losses in life, especially in chronic illness life. Things are not the way they were supposed to be. And if you ever find yourself sobbing over a bin of shoes outside a tiny storage unit or in some other crazy place, please know you’re not alone. Feel all the feelings; cry if you need to even if it’s over a bin of shoes. That’s the only way to move forward. Chronic illness and losses are really really hard, but we can get through it together.

Puzzles, Deserts, and Chronic Illness

I took a much needed work break from Christmas Eve through New Year’s weekend. It’s been a privilege and a necessity for me to help people through this challenging time. But Because of the pandemic this was my only time off in all of 2020.

One of my accomplishments: Putting together a 1000 piece puzzle – a picture of desert succulents. And that was my inspiration for this post. A puzzle is a great metaphor for life. And chronic illness very much resembles a journey through the desert.

Life often feels like one big puzzle with a series of mini puzzles along the way. It’s filled with lots of broken pieces, confusion, frustration, joy, feelings of accomplishment, and sometimes all of those at the same time. And just when you’re about to give up, someone important – a therapist, friend, family member, colleague, etc. (in the case of this puzzle one of my family members) – comes along and helps you put a crucial piece in that gives you the momentum you need to keep going. Also, sometimes just turning the puzzle and seeing it from a different angle or perspective helps so very much. And sometimes only when we get to the end of a puzzle or a puzzle section do we see the beauty in it and how all the pieces (even the boring gray ones or the challenging edges ones) fit together perfectly in the finished product.

Chronic illness can especially feel like a puzzle. Lots of various puzzling symptoms appear with no idea of where to begin or what specialists to see to figure it all out. My journey to a psoriatic arthritis (PsA) diagnosis started with a physical in my primary care physician’s office in which I casually mentioned having some joint and back pain. This led to an MRI which led to an appointment with a neurosurgeon which led to physical therapy which led back to my PCP’s office and a subsequent referral to a rheumatologist. This puzzling maze concluded with an appointment with my rheumatologist who I’m convinced is the very best physician on the planet. I just happened to get lucky enough to see a rheumatologist who specializes in PsA, and he put together all of the pieces of the puzzle for me. Psoriatic Arthritis. I say I was lucky because not all rheumies are created equal, and many PsA warriors go undiagnosed for decades until they find the right one.

Even after a diagnosis and an expert rheumy, PsA can be very puzzling. The skin issues, eye issues, comorbidities like my ulcerative colitis, mental health issues, medication trials, medication side effects, etc. etc. The same diagnosis looks drastically different in different people. And the various medications available work for some patients and not for others. Success for some looks like complete remission and for others like me it involves going from a 10 on the pain scale to a 6. But even that change meant me progressing from being completely unable to function to working full-time. And a few sadly feel no relief from all available medications.

Also, symptoms can still be very puzzling even after diagnosis. For over a year I suffered with mysterious lower back pain. Different specialized physicians came up with different answers – lumbar spine issues, hip issues, pinched nerve issues, etc. My PCPC sent me for more MRIs and my rheumatologist referred me to another neurosurgeon and a neurologist. The neurosurgeon then referred me to a physical therapist and a pain management physician. Finally, through the combination of physical therapy and pain management, I discovered the main source of my back pain – sacroiliitis: inflammation in my SI joint which is a less common and very debilitating symptom of PsA. It takes just the right team of healthcare professionals to diagnosis and treat chronic illness. I have a primary care physician, a rheumatologist, a gastroenterologist, a pain management physician, a dermatologist, a psychotherapist, a physical therapist, a massage therapist, an optometrist, a gynecologist, and a dentist. In the past I’ve also had other alternative practitioners, like an acupuncturist for example. I think I mentioned all of them? Lol. And more on the insurance struggles in covering or not covering all of this care in a later post. PsA is very puzzling indeed.

Now on to the desert analogy…

Chronic illness is very much like a desert journey. Unless a person is lucky enough to achieve full remission and stay there, symptoms never go away. And it’s impossible for any other person to truly understand the experiences of a chronic illness sufferer. Even among sufferers with the same diagnosis, the journey is very different for each person. And it often feels very very lonely.

Most healthy people choose not to go through the desert with you. Because it’s hard. I no longer have the energy or physical ability to plan large social events. There are many activities I can no longer do. I don’t play the social games anymore. And I have to choose very wisely how to best spend my limited energy. As soon as I feel inspired I will devote a whole post to the grief and loss involved in chronic illness life.

But when I put together this entire puzzle, I discovered that there is still an awful lot of beauty in the desert. It’s much harder to find for sure. But it’s there. And I’ve found the beauty to often be much better here in the desert. I don’t waste energy on toxic people and toxic places. I found who my true friends and family are. And instead of always only serving others, I’ve allowed those people to experience the joy of serving me.

I am a better person. Much more empathetic, more aware of the needs and challenges of others, more aware of my surroundings, more aware of the things and people that truly bring me joy. I love myself more. I’m less busy, less hurried, and much more focused. And I enjoy my life so much more now. I’m very thankful for the people still in my life and the joy they bring. Life is now truly beautiful. And I hope it is for you too. There is still lots of life in the desert.

Leave a comment and let me know the beautiful things or people in your desert journey.