A few months ago, I found myself just wasted and sick in a hotel room in Phoenix. I was on my way home from Yuma where I’d spent the previous two weeks wading through the healthcare system and waiting for results of a PET scan to determine whether or not my dad had lung cancer. I was very relieved to know that he didn’t and simply attributed my fatigue to the stress of it all. I’d also been dealing with some GI problems and thought I was sick due to that with the full expectation of being just fine once I got home.
A week later, I went to an appointment with a GI specialist at the Mayo Clinic. He’s a great doctor who consulted with us when Hannah was in the hospital in 2014. He’d ordered several tests ahead of our visit including a blood test that told me that Hashimoto’s Thyroiditis was if full swing. My TSH (thyroid stimulating hormone) was also very high. As for the GI symptoms, I was diagnosed with a condition called BAM (Bile Acid Malabsorption) due to having had my gall bladder removed in 2012. I’ll spare you the details and just say it’s no fun to live with at all. I left his office armed with new prescriptions for a medication for that and and a higher dose of thyroid medication. I came home and expected to get my life back on track. Expectations can be such a set up.
After a few weeks I find myself relieved of the BAM and for that am totally grateful, but I continued to feel pretty wasted and sick most of the time. I returned for a follow up appointment two months later and discovered that my TSH level didn’t drop at all but instead increased. It’s not supposed to do that so I was referred to Endocrinology. They were able to see me the next day.
The endocrinologist determined that my small bowel wasn’t able to absorb regular thyroid medication so I would have to take it in a gel capsule that would dissolve in my stomach. (The copay is $90!) I went home and planned to feel better but instead that happening I actually felt worse. A few days later I woke up with a lovely bright red butterfly shaped rash on my face which is a classic sign of Lupus. After consulting with the GI doc again,, I was off to see a rheumatologist, a speciality I’m already very familiar with.
This is where things began to take on a whole new level of real for me. I’ve dealt with the reality that I have had autoimmune issues since high school, for over 45 years. I was first tested for Lupus in 1977. I’ve now seen a total of seven rheumatologists and each one has given me a different diagnosis each time. Based on symptoms and blood tests, I was officially diagnosed with Sjogrens Syndrome and Hashimoto’s Thyroiditis in 1992 just prior to a diagnosis of Lupus. All of it has been a long journey of frustration at times because without warning it just hits, the rug is pulled out from under me and I’m in bed for anywhere to a day or several weeks. In light of the last few years (five surgeries in 9 months in 2011-12 and a nasty recovery from a thoracotomy), I honestly thought these drastic autoimmune hits were behind me. After the rheumatology appointment however, it became crystal clear that they are not.
I’m back on the drug plaquenil, have taken a course of prednisone and if all of this fails the rheumatologist is suggesting Imuran, a nasty chemotherapy drug that made my liver go toxic a very long time ago. It sucks. There is just no other way to say it. To say the least this has really been a blow for me at the beginning of summer, especially the instruction to stay out of the sunshine!
As I have been thinking about this, it came to me tonight that this journey, this roller coaster of a ride through life has taught me a great deal and for that I could be grateful. I’m flexible, patient and don’t get too shaken up when a crisis occurs. I’ve accepted that crisis are just a part of life for the most part. However, in recent days, dealing with the reality that my autoimmune diseases are no longer quiet (they really weren’t…it’s called denial), and that I must deal with them, first pissed me off but as time goes by continues to sincerely humble me. I have come to realize that because I was in remission for quite awhile and because I’ve overcome a lot of traumatic things in my life without the auto-immune thing seeming to even enter the picture, I’d inadvertently reached a point where I honestly thought that I had figured it out in some special kind of way.
I have been rather proud of myself for surviving and attempting to thrive no matter what. My therapist says I’m a badass student of myself and psychologically very healthy, one of her hardest working clients ever. I’ve done a lot of therapy – physical and psychological, I’ve read countless books on healing and made continual life style changes as a result but dammit to hell, I’m still a human being and I don’t really want to be one all that much right now. It unnerves me that I still need the patience of my husband and children, my friends and extended family,t hat I have to pace myself and that doing laundry is a huge undertaking. I cannot work for my keep or to achieve something profound and that really pisses me off. I just have to live in this beautiful house and have all of my needs met by my generous husband every.single.day…”I am woman hear me roar,” anyone?
I know, seriously?
Tonight, I honestly do want to be grateful.
I want to be aware of the great gift life has been for me in spite of this craziness.
But tonight, I also just feel smashed to the ground and broken.
But tonight there is a new wind blowing, a gentle breeze that says it’s okay to be broken. I am reminding myself that in the past, seasons of brokenness there has always been this place where God shows up, where miracles happen and life begins to make sense. It is rarely a place where I will go willingly. As I enter the outer edges of that place again, I know that I will find my selfish ambitions dust and my proud opinions hallow. But I also know that in that sweet place, a soft light inhabits the space about me, a soft rain drops on me when I’m thirsty and a gentle sun shares its warmth with me and I am just fine. It’s the getting there that is just excruciating.
Since moving to Minnesota in 2005, I’ve been shattered multiple times by one thing or another. Some having to do with the move and some simply with the age and season of life I’m in. The deal is that I reached a point where I had determined that I’d had enough of life’s pain and began to harden myself to it. I haven’t let my heart break open because I’ve been so angry. The deal is that I cannot move forward when I’m angry…I can wrestle and determine that I will be positive and that I will keep moving but all I end up doing is just that, moving, just going forward.
I don’t want to just go forward anymore. It’s taken this reality of my body fighting the war within itself to wake me up and remind me that with the humble there is wisdom. I genuinely want to be a wise person. So tonight, I open my heart a little bit more and with that opening attempt to make room for the brokenness that opens up the deep in life that I know is there for me.
If you’ve read this far, bless you.
3 thoughts on “Getting Real…Being Sick”
Path of briars …
It’s always difficult to deal with health issues when the mind is feeling young and active. That is what I have encountered. I used hypnosis and practice mindfulness along with Zen and Buddhism. I am Catholic but these other things are very helpful. I am 73 but my mind is 50.
Am in awe and amazement at your courage, growth in this process, and articulateness Jane. Since I deal with my own version of these issues your thoughts really resonate. Thank you for sharing and I’m sending wishes for some peace and ease in your life.