You all know the saying about the coldest summer right?
So, when it’s warm here, its lovely, and every frustration within the Golden city is forgiven with views that inspire deep understanding of the word ‘paradise.’
I was offered the opportunity to house sit for friends who have one of the most beautiful gardens in this city. It’s almost the size of a house lot itself, and in the very back reaches is a special pool.
I was doubtful about offering to house sit, since movement and use can spark symptoms, and I know now that activity has its price.
The family themselves eased my fears, letting me know that the house had been adapted for one of the family members who has MS.
Even the garden had been set up so that there were plenty of supports to make it all the way thru to its end, where, tucked in the far reaches, I saw the shining pool, custom designed for MS therapy. My youthful pool side days growing up here in California flooded back, and I smiled to see the blue waters.
I knew the family understood my physical situation, so I felt more at ease and excited to sample an environment that had so beautifully integrated mobility enhancements into such a wonderfully warm, bright home. I was inspired, as if someone had opened a window to show me what is possible, a normal life with some modifications.
I was also happy to have a place to enjoy with my son, so much of his childhood we had spent outside, I hoped the garden would allow us an important connection that had been frayed and tested by this condition.
I was also excited to try swimming as exercise. I hate that I can not walk. I hate that I can not exercise. I do any type of movement I can at home, when I feel good, I dance, or at least move the part of my body that can, and when I feel good in the right arm and leg, I do small movements, careful to remember that building up, little by little, can be built upon for longer-term improvement.
By now, many of you might recall that into the second year, I began using warm water as a pain management technique. Over the last year, as it seems I am experiencing more ‘chills,’ the warm water has become instrumental in managing the pain in my right arm and leg, and brings relief in a way that a shower had the opposite effect, each drop burning my skin.
I also found the water temperature somehow balances out the internal temperature, bringing relief.
On caveat. I have noticed that afterwards, until I lie down again, there is a sensation of the outer side of my leg being ‘asleep’ like the circulation is not moving there, and its bothersome. This is what I feel when I stand for too long, when I go out, I have to ‘shake’ my leg to try to get relief. Getting off the leg is what eventually brings relief, and one of the reasons that I, over time stopped trying to force myself to walk, thinking I’d strengthen that way. The nighttime after walking or activity comes with throbbing pain in my arm and leg, and incessant nerve firings or perhaps, now I better understand, those are spasms.
I’ve wanted to try swimming, believing that all my many swimming days when I did not have RSD would add up to extra movement in the water, the opposite of the restriction I feel walking on land.
Last summer though, as I prepared my application for the local YMCA, and started doing small exercises to prepare to swim, the activity upped the symptoms in my right foot, provoking the sensation of a broken foot with each step, and a near 3 months almost entirely home bound.
FRUITY ANTI-OXIDANT FLAVORS!
Speaking of healing waters! Don’t forget that summer is a great opportunity to combine fresh fruits – high in antioxidants – and other supporting herbs for a healing bath. I have recently read research that shows how the skin in involved in chronic pain, and perhaps this points to the various skin reactions of people with CPRS, the ‘burning’ sensation, and other skin issues that develop for chronic pain patients. If I understand correctly, the skin symptoms may be an indicator of pain, rather than as a symptom of pain. Read the full article here to learn more. Taking in mind what I read, I wonder if I am inadvertently nourishing my skin, and hence decreasing symptoms by adding these anti-oxidant elements to my baths. Worth a try.
So, a year later, and a pool right in the back yard, a yard where I could sit with the trees and birds and sun, I felt blessed for a break from the little 3rd floor studio from which I rarely venture, I felt blessed.
Before arriving at their house, I had to figure out how to get my son home from camp, located about an hour and a half away. The camp had arranged a carpool there, for which I was grateful. Yet, I had felt so useless as a mom to not be able to take him, to not be able to enjoy an activity we always had, driving through beautiful California, exploring together this great land.
So, I set all my sights on going to pick him up. I couldn’t wait for him to see the garden and pool too. I spent a few days preparing physically, resting up. It was a beautiful day. Warm, which helped a great deal, as for me, the warmth seems to make it easier, movement wise.
Already having driven over an hour in unexpected stop and go traffic nearly the whole way instead of the cruise-controlled, gentler-for- my leg ride I envisioned. I was late too which stressed me. I should have stopped and done a quick EFT which immediately helps lower stress and has become a valuable tool for me.
My teen son was happy when I drove up, dusty and tired, but happy. He jumped in the car with ‘I hope to come back next year too’ which was a good sign he had a positive, healthy experience at this new camp. Yet, quickly, as I wanted to know everything he had done, before I knew it, he remembered he’s not supposed to not like his mom, and the conversation ended with ‘I hate you.’
I tried to push back the sense of being unappreciated, and tried to remember I could be purple and my teen probably would find something to hate in his parents. The bull and the lion. We quickly were done with our mutual fit, and we went on down the road towards the late setting sun along the coast.
I had driven this road so many times, it was familiar and felt like home since I had known it most of my life.
Before jumping back on the road, we stopped for a bite to eat which was nice for about 10 minutes before texting interrupted and we were two generations at odds as to what to do with such a beautiful moment in the here and now.
I realized just how close we were to the spot where my grandpa had always taken us each summer. I decided to share that special place with my son, stopping so he would know it too.
Sitting there with him, in the presence of the spirit of my grandfather, I knew that we had come through so much these last 3 years, so many changes that RSD brought, requiring us to become stronger in other ways, to grow closer in new ways. In my next post, RSD and Parenting, I will be sharing a bit more about this experience we’ve had and what I’ve learned.
The journey seemed to bring us back together for a brief moment, before he made it clear that it was already an hour and a half later, and he wanted to get home, he was tired and wanted to connect with his friends.
We set out on the return journey, now with no traffic, cruise control the savior. Time with my son, a reminder of normal like before. A reminder of what we lost, and what we’ve gained.
The sun kept shining the next day, now, at the house sitting, the garden my new den. The sun didn’t take the pain away, but it felt like a soothing hand. The birds, the breeze, the trees, they sang to me and helped ease the pain and connected me to a deeper truth about how fragile life is, how quickly time passes, how we are a grain of sand rolling in the ocean of time.
A day later, when I read that the health plan had rejected the request for a wheelchair, this time, because ‘there was no diagnostic testing to show’ I needed the chair, there was no proof I needed the chair.’
I began to feel an overwhelming sense of futility. It was like a kafka nightmare. I realized no one is really going to care whether I get treated, or whether I am seen by a neurologist. No one worried whether I was going to be able to have a better quality of life with RSD.
Perhaps it was the visit to the generational spot of our family, there on the coast, or perhaps it was simply accepting that my experience is like so many others that no one cares about either.
I came to face my own temporal existence in the world. To consider the future, what is left to me, and how I will live that life. The experience had the effect of pushing me to come to terms too with the change in my body that is there 24/7, when I wake up, and when I go to bed, and to recognize that I am different too.
Its perhaps what has lead me to become more vocal in ways I might not have before, perhaps because I now have experienced things, and I feel that its important I add my voice to respectfully asking for change.
There, at that spot on the coast, I had time to give so much thanks to my ancestors and to life, to this land, to our country, to my family and all those people who have shared so much with me on this journey, for all the people I came in contact, or got to know, or grew to love, and even those, who later drifted away, or from whom I ran.
I use meditation to work towards acceptance and forgiveness, and pray, that one day, things will change, a cure for RSD, cooperation on research, diagnosis and treatment, and a change in how RSD patients are treated.
What I learned while house sitting, laying down, not moving in my little studio was masking what having a huge house and garden to walk showed.
My symptoms increased steadily each day I made my way thru the house, and the swelling in my right arm started again.
Swimming, despite the most luxurious feeling even when not using my legs, brought swelling in my left forearm, and skin rashes sprouted up again. After another week of pushing myself so my son could get to camp and back each day for a week, both my arms are swelling, and the terrible burning that I had been able to calm, has come back in both arms.
Today is my birthday, and despite my plans to go out this evening, even for a brief moment to wish a friend well on her way to graduate school, or to go sit to see another friend’s film, I realize, that’s probably not going to happen.
As the symptoms spread, I work hard to keep down my panic. I feel my attention turning again to the doctors, why isn’t the new neurologist calling, is this going to happen again?
I saw my new doctor again. She mentioned that the last place had not recorded all my symptoms. This did not shock me. I have the photos to show the symptoms they said they never saw. I began taking the photos when the first blister developed that left a crater in my right arm, just below where the needle had gone in. As the delays continued, I wondered, if the doctors keep sending me home and telling me to come back in six weeks, what symptoms do they see? I am never asked what my symptoms are, nor asked to record them. I have any way.
My new doctor has referred me again to a neurologist, a 3rd attempt to see a neurologist, to confirm what she believes is RSD. I pray they will finally see me.
This time I was referred to a neurologist outside the city. My first referral sent by my doctor was not received. The second fax was, and my case is being reviewed, they’ll call me in 5 days.
Its been a week. I work at pushing away the worry, besides, there is only one neuro specialist there now so it might be a while still.
I turn again to my meditation, ‘I am the doctor.’
I turn to this meditation not just to spark my own internal healer, but, also, as a protective mechanism to the wait, wait, waiting.
I also use the EFT too, to strengthen myself.
So, I continue to wait for the call. I’ve been trying to get to a neurologist since April.
In the meantime, I am trying to find a new balance, to bring the symptoms down again. That means being home bound right now, using the arms as little as possible, walking as little as possible…and its hard for me to accept.
Writing and connecting with people thru the internet is a lifeline. I can start to see a line ahead towards crafting a new life, even if RSD is confirmed.
I have been watching Youtube videos about CPRS, well, really, people’s stories about how they have healed, others sharing their symptoms, helping each other by sharing hope, by making connection.
Regardless of any challenge any of us may face, we all need connection to lead healthy lives.
I am deeply grateful to the family in whose home we stayed, for giving us the space to reconnect to each other.
And, to that special place on the coast, I am grateful for the connection with those ancient cycles of life, just as vital to human development today.
I left the house very inspired to move ahead in life, to do the best I can, with the abilities I do have, and to strive to overcome limitations.
I was inspired to reach out to the Department of Rehabilitation about attending art school in the Fall since I was accepted in June. My recent flares have worried me though, will I be able to go? Will doing so only cause a relapse of the torture of the very worst symptoms?
I’ve had to soak twice a day lately. I am adjusting my food to add even more healing, pushing back a cold, which seems always at the ready these days.
I wait. Doing the best I can in between.