Baltimore Sun Health Chat: CPRS and RSD
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.
Ok, yesterday, and last week, I was feeling pretty powerless. A friend called yesterday afternoon, my cheery disposition a surprise. She tried last week to help by referring me to two people who might be able to help me find access to a neurologist. My dear friend heard the panic and fear last week as I realized the specialist’ advice to get to a neurologist was not something I could compel the hospital to do, and frankly, how ridiculous to not have access to a neurologist and pain specialist anyway?
I was cheery because I put that stress in a space of time, allowed it out yesterday – and, then, I put it away.
I was able to sit up most of the day working with my leg in the right spot for the pain to not become overwhelming. Walking around the house, the pain was shooting in my foot. I stayed put. Luckily, now, I have in-home support so laundry was done and brought back up the 3 flights of stairs, and, she did a little grocery shopping so we had food to eat.
Nausea came, I ate honey. I drank Ginger tea. The tea is really starting to have an impact. It’s interesting that it takes time, it’s a gentle building up. Yesterday in the evening, I felt some tingling in the right side of my right leg, and it was noticeable. You can imagine I have started my morning today with Ginger.
I am also on a Live Chat with Dr. Christo from John Hopkins, who is answering questions about CPRS from readers. This chat feels like a blessing, to connect with a real live specialist. I have submitted several questions so I hope I can get a few answers today for things I did not know already, and maybe some of the answers can turn around this situation.
Anyway, I want to open up to hope and possibility by learning, finding out as much as I can about CPRS – If you want to catch the last half of the Chat you can visit at
I hope this brings you a little comfort today!