Its been a while since I’ve written.
After my second appointment at Stanford, both myself and the woman who helps me, we both caught a horrible flu.
I haven’t had a flu-like that for a long time.
I haven’t written much either because not much else has happened.
I feel very fortunate to be meeting with the doctors at Stanford. It was such a relief to hear the doctor say immediately he knew what I had. When we were in the waiting room, we talked to a couple who had traveled from Bakersfield for their appointment. They told us in Spanish they drove the distance because the doctors at Stanford were the best in the world.
It’s a relief to meet with experts who know and understand RSD. I mean, I feel lucky to talk with them. They are on the cusp of this fight to find an answer for RSD.
I met with my GP. She recommended taking a semester off from SFAI so I can work with the pain specialists. Unfortunately, the SFAI program is a year-long, so that means I can’t go back until next September.
Not the news I had hoped for, yet, I had to open myself to seeing the positive side of focusing on getting completely better.
I went to the bank and store the other day, walking and rolling my cart was unbearably painful and I caught a cab home. I felt rather defeated.
When I go to the Stanford Pain Clinic, which is in the back of the wing, I can use one of the many wheelchairs, and avoid the painstakingly slow pace of walking.
I love how fast I can move and get myself around.
I hope that until I can get back on my feet, I can finally obtain a mobility device. I think a scooter, mobility, can really help in the meantime.
The insurance rejected the request for a wheelchair, several times. They said I wasn’t diagnosed so they couldn’t approve the chair.
Now, I am told, with Medicare, all I have to do is ask.
Well, I called and called, but the Medicare number kept disconnecting after a few rings.
So, is that the joke. All you have to do is ask, if, you can get through?
I liked the rush of air on my face when I was in the wheelchair, feeling my hair blowing in the breeze.
Until now, I didn’t realize how long its been since I’ve felt that sensation.
Tests and Records
My GP said that the neurologist had ordered more specialized blood tests, and that Stanford confirmed CRPS II. She also said they were concerned about a possible spinal issue.
That was a surprise.
I sent my records of EMGs and MRI’s so let’s see what Stanford can see from those tests.
Maybe Stanford will schedule new tests. Now, 2 years have passed since the last ones.
Wait and see.
In the meantime, I am starting to adjust a bit now to the change in my child being away for the first time. He’s at home now for the monthly break so I am happy to be with him. I had hoped in the month he’s been gone, I’d have more answers, and be further along in the treatment.
Its been over a month since I sent the first copy of my medical record from the first doctors I was seen during the first 3 years.
I get angry with the waiting.
I have a child to support.
I have a life I want to get back to, opportunities that are my dreams, a lifetime of working towards. I was interviewing for a documentary series when I was injured. I want to go back to my career.
Despite the doctors signing reports and notes, the social services continue every month to delay our benefits. Every month. I feel like I am being punished for needing the disability support. It compounds the sense of loss to not be able to work like before, do what I could before, and I feel badly to not provide.
I wonder, is this how other disabled people are treated each month too?
This week, I allowed myself to feel the frustration in not being physically well, particularly since, for the first time in over a decade, my single parenthood schedule is different enough so that I can consider returning to my career full-time.
I feel an urgency to have the testing and evaluation done so that treatment can finally happen.
Why is it so hard to get the results of tests that hospitals and doctors have access?
Spreading of RSD
Still, no one can tell me what’s wrong in my right leg. Still, the specialists say, RSD generally doesn’t travel.
So, what of the hundreds and hundreds of people with RSD in whom it spreads, is documented to have spread?
The whole issue of whether RSD can spread to another limb was the big question that held up treatment for an assessment of what else could be causing the leg issue. That’s been going on for 3 years.
Well, this conundrum I am told, is one of the many aspects of the RSD debate.
So, when I recently found this study, its findings helped clear up the debate for me.
The spreading of the RSD from my right arm to my right leg is not unheard of — in fact, this type of spreading is called ‘Ipsilateral,’ as opposed to ‘Contralateral,’ which the name implies, spreads from one limb to the limb on the other side.
Spreading of CRPS is not random, the study concluded.
In fact, I rarely read of when RSD doesn’t spread.
Why am I being told this kinda thing? Still?
The article published in February 2011 summarizes a study at the Department of Neurology of the Leiden University Medical Center of 185 patients.
Ispilateral spread occurs less frequently, but does tend to show up in younger patients, and may point to other genetic and immunological components still being studied.
As with all research, it’s always best to read the source article (link above) as I’ve only provided here a simple, non-medical summary. I read this article on what I have found so far to be one of the most dynamic of the research sites, T. Howard Blacks Definitive Link Library on RSD.
Why then the lack of testing with all that equipment to find out what is wrong in my leg if it’s not RSD?
The urgency of making a living for myself and my son makes this debate so esoteric as to feel rude. Especially while it’s so hard to even get those devices that can improve mobility. Three years have passed since I have walked without pain.
I had another dream. This time, I saw myself walking around a new neighborhood, and I remember looking at myself with happiness to see that I was not walking with the cane any longer.
Community Healing and Prayer
One of the nurses shared with me how much prayer had helped her daughter and asked if I had begun praying.
I have not written much here about that part of my healing journey. Maybe I should have written more, but, all the outcomes are what I share in my writing.
Prayer, no doubt, has been an element from the start. For those moments of horrific, mind-blowing pain, you can believe me, prayer is a huge part of making it through that type of pain.
I have been fortunate to have so many people praying for my recovery from CRPS, and, I have participated in group prayers for healing.
I have felt an improvement in my mood, and decrease in my sense of isolation.
I am inspired by so many with stories of healing, even, when all hope was lost.
Ever since I read there are cases of spontaneous healing of CRPS, I have set my sights on doing just that – healing.
Looking within – Art as Healer
At the same time, as my grandfather taught me – ‘when there is a problem, look inside first.’
It wasn’t easy because I was in so much physical pain, but, I also began to take a look at my own life and who I was as a person. My art during this time, captured in this video below, was part of my healing work.
Art was my refuge, a place to pour my feelings so I could move past the anger I felt about suddenly having a horrific pain and disability where the day before I had none. I know everyone with this condition understands that feeling.
The woman floating on the ocean, and the one at the end, where she is sitting on the banks by the ocean holding a shell above her head, were recently published in the program announcing the screening of my film.
I have so much in life I want to return. I am just grateful for the art I can do still.
I stopped drawing and painting after we became homeless. My supplies are in storage still, hoping soon I can leave this perch on the 3rd floor, to get to the ground so I might try to get out more often, and get my things out of storage. I’d like to start drawing and painting again.
When I was seen by the new doctors, I was told the pain in my arm and leg were separate, unconnected.
I had never thought of it.
So, I spent the last few weeks observing – is the pain connected?
I never found a time when my arm and leg pain was disconnected. In the morning when I wake, it’s there – sometimes less, sometimes more. Yet, always there, on both limbs.
My arm pain may be less in comparison to the leg when the pain spikes from walking, but, like last Sunday, when I screened my film at an event, all this week, my entire right side was in deep, deep pain for several days afterwards. All week, my ankle has that swollen ball from which the pain seems particularly worse.
If Venipuncture RSD is so rare, why do they keep trying to tell me what is happening in my body instead of asking me?
My dad will say that the pain switch that goes on with CRPS is triggered by stress so in a way, that pain and disability was always there, just latent, and the stress of my artistic, on-the-edge life is what eventually caused the CRPS.
Yet, a new study adds to a growing body of work that seeks to dispel – once and for all – the notion that CRPS is caused by emotional or psychological issues. The 2010 study published in Joint Bone Spine Journal (Vol. 78, pages 194-199) found that biopsychological complexity is not associated with perceived pain in CRPS type I. Although different from the CRPS II with nerve damage, I wonder if the study applies.
So, its back to that question – does the fact that I didn’t recover from the Venipuncture wound, vs. someone who does, mean that there is an emotional/stress factor that causes CRPS?
I don’t know the answer. When I offer to go to therapy 5x a week if it can make me walk, in three years, no one has taken me up on the offer.
Do I resent the debate being carried out on CRPS patients? Yep.
If the issue of who does or doesn’t experience pain is such an important debate, well, how about trying the study on cancer patients with neuropathic pain, or patients going for a root canal. Do a whole psychological work up to find out what might be making it possible for those, and not others, to feel the pain from their conditions.
And, make sure to deny that they should even feel that pain.
I mean really.
I read about this new innovative test for verifying pain. Like measuring heartbeat (yep, I’ve felt my heart speed up when extreme pain strikes. Like cutting my food the other night at dinner, when a sharp pain caused me to drop the fork and knife like hot coals), or, sweating with increased pain (check).
It occurs to me, there might be some simpler answers.
Why hasn’t one of these doctors, in three years, ever gone walking with me?
I mean, simply walk outside, around the block, observe what happens when I walk, where the pain is, and how it impacts my walking.
Not only do we do no walking, there is no actual exam of my leg or arm. No tests for weakness or damage to the bones.
I sit on a table for 15, maybe 15 minutes, sometimes an hour, that’s it. How are they going to know the pain when I am not using my leg and arm?
Excuse me, is there any other type of reporting?
I’ve never been asked to log my pain, or describe the symptoms over time, or to share how the symptoms change with weather.
How exactly do doctors find out about pain?
If there is a way, in 3 years since the Venipuncture RSD, I have not been shared those tests or methods.
Meanwhile, I continue to wait to hear about the results of scientific, medical procedures to know whether there is radial nerve damage still in my arm and leg, and whether there might be a spine issue.
CRPS vs. Neuropathic pain?
In 3 years, no one has been able to say whether its possible to have nerve pain and not have CRPS. I’ve asked, over and over.
I mean, if my nerve was injured, what makes it CRPS and not just plain painful nerve damage? These are questions no one answers because they say they don’t know why – why someone with spinal injuries can report no pain at all and why people with a simple nerve damage from a needle can have pain.
Well, in a study published in the European Journal of Neurology 2010, (vol. 17, pages 1010-1018,) carried out by a team of experts from various Pain and Neurology Clinics and University Departments from around Europe. The study sought to consider the guidelines for Neuropathic Pain Assessment, and the tools used to make NP diagnosis.
Interestingly, the study found that NP can often be confused with CRPS, with the study authors, in fact, finding that CRPS can sometimes be ‘overdiagnosed’ where possibly a Neuropathy or NP related condition is instead a proper diagnosis.
The study concludes by sharing which testing mechanisms the team assessed and found useful in diagnosing Neuropathic pain.
Again, please read the study yourself, or talk over with your doctors, to get a medical review of the article.
Reflection – A Mutual Benefit
I know others with CRPS can also understand how awful it can be to have someone pointing the finger at you when they themselves have no real answers either.
If we are asked as patients to dig into our personal lives to see how our actions could be cause for CRPS, why not the same of the medical system that treats the condition?
After my experience, I think these are valid questions.
As many times as I’ve been asked whether I filed a lawsuit, why has no doctor asked more about the pain, or done any testing?
Why can I still not get a factual answer about what the tests done up to now say?
And, if Venipuncture RSD is so rare, why am I spoken to like they have all the answers or know all about it?
I feel lucky to be able now to see the experts at Stanford, known for its innovative research.
I will meet with the experts next week.
HONEY – 20 amazing uses!
I’ve written before how Honey has been life-saving for me with the nausea that results when I exert myself physically. I’ve also written how using honey over the last year seems to have actually improved the nausea that came even when I was lying down, and got worse as the pain increased.
Well, here is a wonderful list of 20 uses for honey written by Anna Brones, travel and food writer, Marketing Manager for EcoSalon, published in the Huffington Post in celebration for Honey Month! Enjoy!
Superpowers and parasitic cleansing? Honey, who knew?
It was brought to my attention last week that September is in fact National Honey Month. Honey gets an entire month all to itself? Why yes, it certainly does.
Turns out that Americans consume 1.5 pounds of honey per person annually, and there are more than 300 types of honey in the United States alone. That’s impressive, and we figured that if honey gets to be honored all month long, the least we could do is give you 20 different uses for it. Enjoy!
1. Put it on your lips
Did you know that making your own lip balm is as easy as tracking down some almond oil, beeswax and honey? Sure is. Makes you feel a little guilty about that $10 version you picked up at the health food store yesterday, doesn’t it?
2. Make your own honey moisturizer
If you’ve got a handful of sweet smelling herbs — think lavender — laying around and ready to be used, why not use them for your own homemade honey lotion? Warm honey over a saucepan until it gets to a liquid consistency. Pour honey over herbs and cap tightly; the ratio you want to use is 1 tablespoon of herbs per 8 ounces of honey. Let sit for a week and then mix 1 teaspoon of liquid into an 8 ounce bottle of unscented lotion.
3. Eat it with goat cheese
In need of a classy hors d’oeuvre but lacking in the time department? Try this: put a round of goat cheese in a ramekin, sprinkle honey and chopped walnuts on top and place in oven at 350F until honey and cheese are both soft. Serve with baguette or crackers and you’ll be the life of the party.
4. Prepare for the end of the world
You never know what’s going to happen, so stock it. Now.
5. Drink it
We all know a drop of honey in tea is good for a sore throat, but you can add it to most drinks for an extra energy boost. And simply because it’s a whole lot better than tossing in a few Sweet ‘N Lows.
6. Make a salad
One of my favorite and easiest fruit salads uses just a touch of honey to enhance the sugars in the fruit, and it’s a perfect late summer dessert.
- 1 cantaloupe, chopped
- 3 nectarines, chopped
- 4 tablespoons chopped basil
- 2 tablespoons honey
Mix together and enjoy!
7. Give yourself a facial
Honey is a natural humectant with antimicrobial properties, which means your skin will be happy when you give it some sweet honey love. Try a basic honey wash by mixing a dollop of honey and two tablespoons of warm water and massaging the mixture into your skin. Or you can go all out and try the Cucumber Honey Facial.
8. Go the extra mile
Forget energy bars and shots, just pop a tablespoon of honey before your next workout. Seriously, it has been proven to boost athletic performance.
9. Remove parasites
Got a post-Southeast Asia backpacking trip bug that just won’t leave you alone? Mix up a good blend of honey, water and vinegar and you’ll quickly be on your way to being parasite free.
10. Clean your cuts and scrapes
Honey can actually be used as an antiseptic, like a natural Neosporin. Because of its many antimicrobial properties, it can be used to treat wounds and even burns.
11. Get rid of your hangover
Forget a morning of popping ibuprofen, spread some honey on your toast or add some to your tea. Because honey is loaded with fructose, it will help speed up the metabolism of alcohol.
12. Clear up your dry elbows
Nothing’s worse than scratchy elbows (no really) so next time, after you’ve washed and scrubbed, rub some honey on to soften the skin. Leave on for 30 minutes then wash off.
13. Soften your skin
Honey is an excellent exfoliant. You can pair it with ground almonds and lemon juice for a killer homemade facial scrub.
14. Mix a drink
After you’ve been busy reaping all the health benefits that honey has to offer, it’s time to celebrate, and what better way than with a good ole cocktail. Honey Gin Cocktail? Bring it.
15. Eat the honeycomb. No really, just do it.
Yes, it can be done! One of our fave food bloggers Clotilde Dusoulier, of Chocolate & Zucchini, put the ingredient to her readers and got some fun responses. The best sounding one? Mix it with crunchy peanut butter on toast.
16. Get an energy boost
Feeling a tad lethargic? Skip the coffee and go for the honey instead. Mix a tablespoon into a cup of tea and you’ll be feeling better in no time.
17. Beautify your hair
In the shower, after you wash your, coat the ends with a bit of honey. Let it sit for a few minutes before rinsing out and you’ll find that your hair is less frizzy and extra conditioned. Or make your hair shiny and bright by adding one teaspoon honey to one quart of water, and after washing your hair, pouring the mixture over your head. Let dry and enjoy your new-found shiny do.
18. Preserve fruit
Jam is so five years ago; show you’re truly cutting edge by preserving your fruits in a honey sauce. All it takes is one part honey to ten parts water and then covering your berries. Pretty much the closest you’re ever going to get to bottling up a little bit of summer.
19. Relax in the tub
Add a few tablespoons of honey to your bath, for sweeter smelling, softer feeling water. Pure bliss.
20. Lose weight
Well, what were you expecting? With a list this long it had to be pretty apparent that honey is in fact a wonder food, and as it turns out, you can even make it part of your next weight loss plan. Honey is an excellent substitute for sugar and it also helps speed up metabolism. Just remember: all things in moderation.
This entry was posted in Letter of Courage Series Archive, Modern Medicine Movements, The Journey and tagged Alternative healing, Complex Regional Pain Syndrome Severity Score (CSS), CPRS, CPRS Databank, CPRS Test to Assess Severity of Complex Regional Pain Syndrome, Global CPRS Databank, Healing, http://www.huffingtonpost.com/users/becomeFan.php?of=hp_blogger_Anna Broneshttp://www.huffingtonpost.com/author/index.php?author=anna-broneshttp://www.huffingtonpost.com/users/login/http://twitter.com, Letters of Courage, natural remedies, new tests for CPRS, RSD, Spirituality, Trauma Related Neuronal Dysfunction Consortium in The Netherlands.