Today, our housing support ends.
I don’t know what comes next.
Its been sunny, but chilly. It’s that time of year when standing on my foot is painful, as if my foot bones were broken. Sharp shooting pains come out of nowhere. I feel myself become afraid. I tell myself to relax. Hold on to hope, hold on.
I’ve learned that apparently no one can find the MRI done on me two years ago. In fact, it was December 2009, a sudden appointment with neurology, I believed I was finally going to get help.
That was a joke. I got a phone call on a Sunday evening from the lowest doctor on the rung, telling me ‘you’ll get better.’
I don’t want to think back to that moment now that I have, it makes me sad.
Now, they say they can’t find my MRI. Oh, yeah. right.
I go back over the last year since I was told that the first hospital was ‘off-limits’ to me in December 2010.
I remember driving home with my Dad, in shock that my doctor had said that to me. I was crushed.
I was reviewing some old correspondence in my year-end cleaning. I came across emails I had forgotten. Twice, Stanford lost the first referral from my GP.
I was so distraught at the time, it seemed like more of the same from the first hospital.
It took my mom calling to ask that Stanford see me. They finally agreed. When the specialist said he knew exactly what happened to me, and told me about a patient of his in England who had just started Graduate School, I felt so hopeful. The nightmare was over.
Then, my medical files from the first hospital were ‘lost.’
No one could find the file I sent by email even though the file never bounced back.
I kept calling, I sent it over and over by email as they asked me to do. I even sent it by registered mail in time for our meeting. But, they didn’t want to talk about the MRI.
At all. Now, the MRI is lost.
I think back to the last appointment. I was told that I was ‘rude’ because I kept calling, and was anxious, that my medical file was lost.
I was told if I ‘do that again,’ I will be prohibited as a patient. Again.
Now, my MRI is lost, no one knows where it is. You can guess I’m not about to call to try to find out.
Ironically, since my dad is a doctor, I sent him the same medical record, and he reviewed the MRI himself. In fact, we talked with them about the MRI, and what he had seen on the MRI, in the meeting.
I mean, I was asking them if they didn’t want to perform even 1 (one) test at all???
Of course, what am I to do now? I can’t call chasing down my own MRI, otherwise, I might be ‘banned’ from the specialists.
Another symptom that has been spiking recently is the incessant pins and needles and itching. Its awful when it spikes at night, making it hard to sleep.
I’ve talked enough on this blog about how I’ve used the warm water (sometimes, hot) as a method of pain control and management.
Over time, I’ve added and experimented with various herbs. I’ve added ginger for inflammation, honey for soothing skin, lavender for relaxing, Epson Salt, and even various anti-oxidant fruits.
This month – Oatmeal!
I’ve added Oatmeal to see if it helps calm my skin in general, or if its more of a ‘spot’ treatment. Since the itching is often worst at night, I may just have to try a late night Oatmeal soak.
So far, I still had itching last night, but I’ve found relief during the day with the Oatmeal soaks so give it a try if you are so inclined.
Well, it has been a year of little progress on the treatment front. And, as I said, we’ve just lost our housing subsidy. While the delays piled on, lost referrals, lost records, lost MRI’s, a whole year has passed, and I am no closer to knowing what is going on or how to access treatment.
I hear people in my RSD support group talk about the testing and treatments, but none of those things are ever offered to me. I called an expert to find out if he can talk to my GP to find out what is going on.
Through prayer and alternative treatments, this year has been a HUGE gain. Spiritually and emotionally, I am a lot stronger within than last year feeling crushed when I was told in Dec 2010 that treatment access was never going to be offered at the first hospital.
The trauma of the last 3 years, of having a medical system that not only hurt me, but pushed me under the rug, attempted character assassination, gathered intelligence rather than help me, the entire experience was a huge lump that sat within me.
It’s a trauma I’ve never known.
It opened my eyes to the Tragedies in Health Care occurring every single day.
Even today, I hear about another woman with RSD who is losing her housing.
The other night, my son brought me to a bawling mess.
He shouted, ‘if there is a Creator, how did he let something like what happened to you happen?’
Alone, in the dark of night, I looked up to the sky and asked Creator, ‘how can we restore my child’s faith? Please help me because I do not have an answer for why this medical system has been able to get away with what it has.’
This horrendous process, from the moment I got hurt up to lost MRI’s today, has shaken the faith of a woman who was embarking on the job of a lifetime, and a 10-year old who watched mom get stuck in the arm with a needle, heard the bear cries into the night, and saw as the rest of our world came crashing down when soon I was unable even to walk. He saw what the medical and legal fields offered by way of help.
The alternative healers worked on me to remove that trauma so that I can grow strong again. Where every visit with the hospital was soul crushing, the work with the alternative healers offered positive discussion with the illness, and sought to mediate the damage of the trauma on my spirit and emotions. I must be strong so I can prove to my child.
I pray to the Creator to please help me restore my child’s faith in this New Year.
May you have pain-free days and walk a good road towards healing, and arriving at peace.
Happy New Year!
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.
A few days ago, the weather was in the upper 80’s, a nice treat for me. It inspired visions of driving a short 2 hrs to the mountains by the ocean I love so much.
Strangely though, while the warmth was soothing, old symptoms cropped up again, like the little skin blisters and itching. Difficulty sleeping too after I attempted to drop back from the medication a bit to see if these improvements with the weather could be built upon.
I have been doing my daily mediation in the morning, listening to Louise Hays every day to work on rewiring my brain.
I’ve had been off my right leg for many days now, so yesterday, when I went to see my child off, I felt like I was doing pretty good. Except, I felt like a failure that I could not drive him, and in the morning, I called myself lazy and asked, was I just not wanting to make the effort?
But, later in the afternoon, after an ambitious attempt to organize my room lead to excruciating pain in my right leg and arm, I realized, it was an illusion I could drive that far on my own, and back 2 hours? The pain reached that pitch that literally causes me to fall asleep. Like the pain killers used to, but, all the time.
A few days ago, I used dance as healer, playing a few songs that can’t help but make me want to move. My left side does most of the moving but I coax the right side as far as I can. I miss dancing sooo very much. More blisters came out, this time, on my left side. I had a blood draw two weeks ago, on my left arm, and I’ve noticed now a few subtle changes on my left side. Still, not enough to hold the left side down in a bit of dancing.
I wrote earlier that I was going to share more about a few of the heroes that I want to give thanks. After being turned away from the neurologists, I was feeling pretty down, and confused about this entire process. Then, in the midst of it all, and because my new GP had thought we needed a RSD evaluation from a neurologist, I finally started connecting with other people who have RSD.
I purchased a book written by Nicole Hemmenway, “No, Its Not in My Head,” about her nine-year plus journey through a very extreme case of RSD in her arm that she got as a young, soon-to-be high school graduate. Nicole eventually ended up in a wheelchair.
Nicole had traversed something few people at her age or older ever had, and as is her spirit, she shared her journey with the world in her book.
Nicole Hemmenway walks the walk daily in her blog http://blog.nicolehemmenway.com/2011/06/25/celebrate-good-times.aspx (You can get her book there too.)
I thank Nicole greatly for her courage, and her kindness.
What has been most inspiring in reading Nicole’s story is hearing about her recovery, of her getting out of a wheelchair. She gives thanks to Dr. Rhodes in Texas who has worked with many RSD patients, and others with similar conditions, to bring pain relief.
I spoke with Dr. Rhodes a few weeks back, and, just talking with a doctor who understands, who didn’t assume I was trying to get out of a ‘bad life’ with an illness, who did not make any judgment of me but had answers about the condition, It was Healing right there!
I have also been inspired by Joseph Martinez. You can read more about Joseph’s experience here http://www.dailybreeze.com/news/ci_18130738
Joseph is currently being seen by Dr. Rhodes. Joseph has a very extreme case of RSD because the condition came on by way of a stomach flu, so his entire body was deeply impacted since the RSD originated in his stomach.
Joseph was also experiencing the nausea that I have, and I shared with his mom that honey has been a savior for me. I take it when I go out to avoid any mishap as exertion seems to provoke severe nausea. When it was warmer, the nausea, just from eating, returned.
The honey immediately stops the nausea, and I am able to recover very quickly. Strangely, I have noticed since using honey for this purpose that my level of nausea has decreased overall.
‘It’s not hokus pokus,’ were Dr. Rhodes’ music to my ears. He knew every symptom I had been experiencing for the last 2 plus years, each and every one, not just 2 or 3 he read from a book.
And, Dr. Rhodes was nice. Hey yeah, he was nice. Not overly so in a fake way, but ‘understanding’ and well, let’s just say, I’ve had a shortage of understanding from doctors so I am grateful for any.
Dr. Rhodes, and the patients who have been treated by him, do not speak in any absolutes. Each case is going to be different. No promises. But, understanding, wow, that is half-way to hope right there and that’s the closest I’ve come to the type of doctor patient relationship I had always remembered until this RSD came up.
I am very excited to leave behind the past and move forward.
My last meeting with the new GP was also inspiring. She understood my frustration in not being seen by the neurologists, and she did say she had ordered my records from the previous place but still had not arrived. She said as soon as she had those records, she wanted to find a neurologist in SF to evaluate me. She took more blood, not sure what for, but it seems right she’s at least checking the levels so to speak. Thankfully, so far, everything else is fine with my health.
To get to see Dr. Rhodes, I need to find out whether I can travel and as my GP confirmed, she doesn’t want me traveling until I do have the neuro evaluation. Dr. Rhodes will work with me for five days and then, can work closely with my GP here to continue the treatment.
I am very excited that, soon, I will have some answers about next steps. If I can travel, next steps are – how? How to be able to afford to travel there, and how to afford the machine and other things that the insurance does not cover. I know I have to get there if Dr. Rhodes can make this pain go away so I can resume my life again. Since I dreamt that I will walk again, I believe this will happen and I only need to find a way there.
It frustrates me that non-invasive approaches such as this don’t have coverage while, often other things, with side effects that can degrade health, are approved lickity split.
My limited income till now has forced me to consider alternative ways to healing. Since there is no cure, only pain management available, there is a lot of space in between that is complex and often difficult to understand, even for doctors.
I see from the RSD Canada site interesting research that shows RSD is caused by nerve damage, and there is another treatment with IV that, like, what I am learning, may be related to how much oxygen the nerves are getting, related to circulation.
There is more research coming available every day. In this day and age, it seems that its important that research be put together considering the rareness and small number of patients globally speaking. What about harder to reach places where many may get this tragic condition and face unknowing doctors too?
I am having to consider the realty again of not having the resources to get to the doctors I need. I thought Medicare would be an answer, but I see the politicians ready to punt it down the road.
I’m not even sure I will be able to cover the costs not covered by Medicare, and some days, I think about giving up on seeing a doctor at all. Talking to Dr. Rhodes helped me consider once again that what happened these last two years may recede forever as a memory, remaining only an impulse to make sure it never happens to anyone else.
In light of the upcoming budget cuts coming down in July 2011, I am now faced with a dramatic income shift.
The in-home support and benefits had made these six months bearable where before, getting food, doing laundry, were painful reminders of what I could not do. Reminders of how awful to be stuck on the 3rd floor and how little I get out at all.
The budget cuts for vital disabled services feel like another sign that I am disposable in this world. Only, I know I am not, so I must find another way.
I feel the stress, which pushes me to want to get better faster, making the month in between till my next appointment with my new GP feel almost torturous.
I want to travel to Dr. Rhodes and live the dream I had a few weeks back of walking again.
I am reminded by Nicole’s experience that this is a process.
Dr. Rhodes also makes sure to explain, his treatment is not a cure, its pain relief to allow for the best possible life.
Knowing that my GP is moving forward and can be part of the team in finding a solution is a huge step forward.
Dr. Rhodes said with the relief of his treatment, patients can stop taking pain medications.
Its one of the most appealing aspects of this treatment, and is a great addition to the arsenal I have been utilizing to gain the improvements I have so far: mediation, positive thinking and looking beyond limitations. I have chosen not to take pain killers, narcotics.
In that vein of considering creating the best possible life moving forward, I have been considering what comes next in my career. I’ve sought the support and guidance of a Small Business Counselor who is helping me address both the internal and external blocks.
I have found myself, at times, very sad that I am unable, right now, to physically lead my life as I had before. I’ve had to process this change, a letting go of the past, to be in the here and now.
I’ve also begun to consider how I can work given my physical limitations and I am trying new experiences.
I’m developing the Catherine Herrera Photography online site for sales from my photo portfolio, from which these latest images are a part.
I am now working on a cover photo for a book, which has been a delight of a project. In this assignment, I have set up the images in my studio, instead of running around on the streets.
I am still working on graduation photos, now several weeks in process, rather than what would have been a day to turn around before. I have to let this be ok, but it feels like a pull weighing me down. Perhaps that is why the new approach to my work is inspiring, having the advantage of a different workflow than photojournalism.
In that vein, I have started to look at writing in a new light too.
Recently, I shared with some friends that this condition’s impact on my mobility had the effect of forcing me to sit down, to stop long enough to focus on editing in a way I had not before. Also, writing.
I try to cultivate a ‘present’ moment attitude, and it is from that space that this series, From My Window, began. I’ve just uploaded new images to the series.
I also took the step of applying to the art institute to see if I can take any classes next semester. I have been encouraged by the experience of RSD patients further into the condition who often say ‘pain is not going to rule my life.’
I did not understand this entirely before, but now I do. Maybe I won’t be a student like I was before, but as I have seen so far, art, communicating and sharing my experience with others has been very healing and positive.
The internet has become an indispensable tool for the disabled, or those with illness. A lifeline that never existed before.
I remember thinking in that awful first year how dearly grateful I was to the internet. It provided needed distraction, and it provided a way to still interact on a level that was not in any way ‘disabled.’ I think that’s why perhaps so many have said they never knew what happened, or others who were shocked by the cane and walking difficulties where my voice and person was so clear here.
The internet is a source for information. It is a PIPELINE to Laughter, which became my best friend.
Since I did not want to start pain killers or medications that had varied results, or in some cases, recalls for off-label uses, I had to cultivate a new tool box of devices. Without the internet, my life might have been very different today.
The cold has rumbled back in, and the warm water of my healing bath each day feels divine, like a rejuvenation and soothing spa. Summer, I bring with me the smells and flavors of fruit. This week, with the left over Jasmine flowers from my photo session, the fragrance of a forest, of deep soil, and I smell health.
I like getting fresh mint and basil, now in season, to put around the house, to smell those aromas feels very soothing to me, and gives me an upbeat connection to nature here in this 3rd story perch.
As I contemplate a career moving forward, I must consider housing for live/work. On SSDI, my income is limited and I have had to grapple with that reality. I felt hopeless about it before, and as I begin packing and looking for where to go next, I may feel that way again, but I am trying to simply recognize it and not attach judgment.
I have looked at artist communities in different places, and even considered purchasing a $100 house in Detroit or Philly and joining other artists seeking places to survive.
But, then, California keeps a strong hold, and I wonder, is there a little plot of land for me? I guess the issue of housing, as an artist, has truly always been an issue for me since I moved out of my mom’s home. I was working on the photo series, Landless Indian, at the time I was injured. You can see the work in progress here.
I joke with my grand-aunt that I will have to learn to grow my own food and figure it out like in the old days and she sounds more relieved with the joke rather than worried as she had sounded a minute before. You see. Laughter. Best friend.
I don’t tell her I am scared.
I feel the beating down of the pressure from the social service agency, again. Now, claims that they did not know about SSDI income, which seems odd, so I have sent them the emails clearly indicating we discussed it right after my hearing, and again, when the housing social worker recalculated my income for housing based on both the ssdi and social service aid. What if in-home support is cut? These are the worries that I try to wash away with Louis Hays in the mornings to start my day, but I can’t say it’s as easy to push away in the evening.
I’ve sent proof now to the hearing judge, will it matter? I have learned over two years of these constant battles, often, its a losing one. It’s discouraging on top of the struggle to get my health back.
In speaking to the, now, several RSD patients I know, one recurring theme that jumps out at me is the need to be an advocate within one’s own community. I have provided information on RSD to the social services agency, hoping I would no longer be seen as an ‘enemy’ out to ‘take’ something. The disbelief on their part has been an added and constant burden since the first diagnosis of RSD in 2008.
I was encouraged by the results others have had in bringing greater attention to the experience one goes through after being diagnosed with RSD, and I believe in sharing with the goal, instead of punishment, of greater understanding.
I decided to bring attention to my experience to disability advocates. I did this in part because of the affinity I feel for Veterans, both as someone whose family members fought, and as a result of the afternoon I spent last spring at the Veterans building in San Francisco. You can see images from that day here.
Soon after, I read about Veterans with RSD, who had gone to Congress to share their experience with the condition, and similar tug and pull with agencies meant to help but confused as we all are by this condition.
I am always encouraged by the positive, yet, determined approach of the heroes I’ve mentioned today. What I appreciate about Nicole is her forthright understanding of the very difficult, and often, solo experience RSD brings, on top of the body ‘feeling’ hurt. She doesn’t hide that painful reality, and in so doing, makes it possible for others to see a way through.
I am inspired by Joseph for his parent’s and his courage to visit over 17 doctors in search of a cure for the excruciating pain their son was experiencing. I am rooting for Joseph and his family. I’ve heard from his mom and Joseph is doing very well.
I am someone who is in the common age group of RSD. I am older than both my heroes, still, I am without shame in saying, I am grateful to them for lighting the way forward with their resilience and faith. May they both be blessed with permanent relief from this pain.
Here’s to living in the moment.
No photos today. Getting ready for my first physical therapy in two years.
Starting the bath, soaking helps with the pain, and calms me. I want to aid myself as much as possible by being in a good space. To bring the strength and resolve I feel when I am not dealing with doctors, without bringing it. I am scared because my general physican said last that the hospital was pretty much off-limits to me. So, what can the PT do?
I want so badly to get better. I can feel myself walking again, and I want to make this a reality.
Apparently, this condition is meant to teach me patience. All the healers, doctors and not, who I visit to find healing, they all say, ‘its going to take a while.’
I do not expect an immediate solution today. All I pray for is real care, real concern, and real knowledge. I know that the doctors may not have answers, but, then tell me. I can be a partner in the discovery because no one wants healing more than myself.
I do share a bit of hope today. I found this week a doctor who is very knowledgeable about CPRS, and, in fact, she specializes in the condition and is up to date on the research. And, she accepts Medicare so in April, when I have it, I can consider going to get her evaluation. Several patients share their dramatic decrease in symptoms. I heard the word reversal, – poor doctor! I cried, could barely keep back the tears. To not have this condition any longer…wow….
Also, there is growing evidence that CPRS may be an issue of inflammation. I have gotten fresh organic ginger to make tea. Knowing that could be the cause, there are many ways to address inflammation with food, with teas. I need a nugget I can hold on to, to work with.
The PT is someone who can tell me more information, and share how to exercise to live the best possible life if I have this CPRS, if I can’t get healed…ifs…
I know I want the wow, but only time will tell…patience my dear girl, patience.
I have a new plant.
I live in the city, downtown, with little dirt from my 3rd floor studio. Yet, the fire escape offers a small space for cans, and I have decided that plant life is important for me to see, even if I can not get to those spots I most wish to go right now.
You know, this lavander plant – for it is not a seedling, in fact, nothing less than a real plant – came to me in a good way, one of those unexpected blessings. I have wanted a lavander plant ever since I started my healing baths (more on this in another post) – believing fresh, live lavander a good addition to my growing collection of herbs chosen to boost the healing power of the baths I take most days.
I use the warm water to ease the pain in my right arm and leg, especially after a week like last, where I was suddenly required to do more than I know my body really can just yet. Family was the call, and I could not not answer. Yet, as I soaked in the tub these last few days, I felt the old sadness creep in, it comes on the waves of pain that holds on to me tightly, so strongly, sometimes, I grow scared.
This lavander plant came to me in an interesting way.
I stood that morning before two seemingly equal looking lavander plants in the store. Since I believe there is a spirit within a plant, that can connect to my own spirit, I playfully experimented in making my choice.
I took the same approach in choosing which check-out line, only, several minutes standing, I realized my stuffed basket of a month’s provisions was much more than the 10 items the line I chose allowed. Humm, ok, choose again.
I had sensed my choice would make a difference, and saw the mistake of line as a move to push me where I needed to go, rather than an error.
As I took the plant out of the cart, and handed it to the cashier, she smiled and said she had just seen that lavander plant this very same morning. She had stood before the plant too, trying to decide whether to toss it, for it appeared weak, and perhaps dying. She looked at the bagger and said ‘really, just this very morning,’ and turning back to me, ‘I am going to ring this up at a discount.’ I was so happy, always needing to watch pennies since my injury, when often, I didn’t have any pennies at all to count.
I felt blessed to receive this plant, and I felt certain, together, this plant and I will do healing work together, like an active joining for a healing.
I know, this intuition stuff is pretty interesting. I suppose others see these things as coincidence, others as synergy. Yet, what happens next tells me this stuff, well, I trust it.
As the cashier and I talk more, she asks what I have, and I say I’ve been told I have a rare nerve disease. She asks if it wouldn’t happen to be RSD. What happened next was like finding a long lost cousin, only hugs can capture the feeling of meeting someone who knows about and understands RSD.
This disease is so rare many doctors do not even know about it, and then, for some reason I have yet to understand, the rarity of the disease somehow allows for a freeing that gives rise to a chorus of people who don’t know about RSD, but feel pretty comfortable speaking about RSD, and making diagnosis’ for those who have RSD.
It is very healing to have someone understand the symptoms. I was grateful to talk to someone who had witnessed the symptoms, and who had seen the symptoms travel, something I was told over and over doesn’t happen, despite so many first person accounts, and journals reporting otherwise.
She also explained more about the complexity of the brain’s reaction with RSD. She warned me to let the guy take my bags out to the car, and I listened to her, only to lift two bags when I got home, and before my neighbor offered to take up all the bags of groceries.
By the afternoon, a large lump had formed on my wrist, and the pain had spiked again.
Only, today, I can look out at the lavander plant and feel certain, I am not alone in this healing journey.
I hope you will know the same too, as hard as it is right now, if you are at pain level 10 and you have never experienced anything like the pain you are now, you don’t know what you did or how this happened, please know you are not alone.
I remember those months, nights after nights, of fear from such pain levels, and now, I too can become scared. Yet, by talking about our experiences, sharing our lessons and techniques for living a better life – regardless of what ‘illness’ you have been assigned – there are ways of living life still.
Hang on tight for today, take it just one day or hour at a time.
That wonderfully healing conversation with the cashier goes into the roots of this plant, and into the healing waters of my bath. May these words in this post go to the root of your pain, and bring a rushing river of relief.
If you are stumbling upon this site today , I can only say it’s not totally up and running to where I envision but in the spirit of moving forward anyway, I wanted to share the excitement of the day!
I know, hard to imagine writing about seedlings in the Fall, but here in California, right now is the time to plant from seed. I recently learned this interesting fact listening to KPFA’s Healing Herb show (sorry, don’t quote me on the title) – here in California, planting right now from seed is ideal. The seeds have the fall and winter to set down their roots, freeing vegetables and herbs to spring forth. I thought that was a pretty cool fact.
And a reason to forgive the fog that invaded San Francisco all summer – the coldest winter…you know it. So, its nice to feel this wonderful warm 75 degree heat, to see crisp blue skies, and Twin Peaks out my window – the view that keeps me alive. The view that tells me – no matter what- its going to be ok. These Peaks been here a long, long time. I won’t, but hey, that’s part of the human deal.
I appreciate the possibility of Spring at this early Fall juncture, renewal, cycle of life, it helps put everything in perspective.
A friend today shared with me how difficult it is for her to watch her mom suffering in pain. She has put off having to accept that her mom might have to turn to morphine because nothing else is working.
I tell her what I do when the pain reaches near level 10 – those moments when a grown woman is brought to tears, and cries out – I try to distract myself – music, comedy, memories, images of places I love, people I love, the beautiful moments I’ve had in life.
Today, that distraction is planting, growing herbs for my healing baths (more on that later), to grow the good food I need but its hard to get access, especially in poorer, more challenged neighborhoods. I like the idea of bringing clean, safe, natural options to the process of planting.
I wonder if pesticides have been the answer for the last fifty years coincidentally as the number of farmers in our country plummeted. You know, planting can be a pretty daunting task in some ways, suddenly, the potato famine that one learned about in high school is brought front and center, and fear sets in. All at once, it becomes clear just what a task planting, growing, harvesting crops truly is!
Stephen Colbert and Jon Stewart have absolutely been the greatest comedy distraction for me since being diagnosed with CPRS. This week, Stephen Colbert takes a try at working as a farm worker, accepting UFW President Arturo Rodriquez’ challenge to “Take our Jobs” so more people can see exactly what it is that the people who plant, grow and harvest our food for pennies on the dollar do to bring us the food that ends up on our tables every day.
Bueno, enough of my soap box for today, because I said I was going to be sharing hope and new seeds of life. Check out these cool tips for naturally protecting against little garden critters and other pests, and then, look for the organic seeds for all kinds of Spring delight!