Carly's Ketamine Treatments Cont.!
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Ketamine Treatments Continued...
So as many of you know Carly started Ketamine treatments back in October. Her mom helped conduct a successful fundraiser to get her to her first round of treatments! She has had 3 additional boosters (all requiring a drive to and 3 day stays in Sacramento). In her last update she had informed everyone of being approved for her disability and we were told that her backpay from the last 3 years would shortly be coming through. Her disability lawyers were paid the first week of December, yet the procesing center is "behind" and has yet to pay her or even notify her of the amount her backpay will be. When starting these treatments we did not know how costly they would be, or even how often they would have to be done.
While the financial burden is difficult to endure, the relief of the treatment is well worth it as Carly has been able to discontinue her methadone and liquid morphine and is only taking her muscle relaxers as needed. Unfortunately, the effects of the ketmaine slowly wear off and through this difficult winter, Carly is now at the point where her pain is 6-10 and she is wanting, but abstaining, from taking her meds.
It takes a strong woman to make the decision to deal with a certain amount of pain in order to keep the rest of her body healthy. It is so important to her health that she not have to start taking these medications again. The doctors are getting her in for her next ketamine infusion Monday, February 27th; which is very exciting! We are so grateful for the opportunity to travel back up to Sacramento but are stressed about how we are going to make it through the next few months as we wait on the government to come through with her disability and on her law suit to either settle or go to court.
The most important thing as Carly is receiving these treatments is that she is taking the necessary steps to help the treatments last as long as possible. This includes decreasing her stress as much as possible, doing water and massage therapy that her doctors have told her to do but insurance does not cover, seeing a holistic nutritionist to adjust her diet in order to avoid foods that are known to cause inflammation and flares (again not covered by insurance), eating a healthy organic diet, taking supplements and other nutrients like turmeric, curcumin, saffron extract, and kava that are also not covered by insurance.
One of the biggest stressors in Carly's life right now is finances. With having to fight for disability the last 4 years she has had to put most of her expenses on credit cards which she now struggles to stay current on with the little allowance she gets from disability. Because of this we can't even afford to get her a compact motor scooter so that she can enjoy going down to the beach, on a walk, or even to the grocery store comfortably. There are so many different things that are needed by a person with Complex Regional Pain Syndrome that the insurance just doesn't cover. We thought we would be able to handle covering these treatments up north but have realized that we need to be humble and come to our community and be open about our struggle. I know Carly believes strongly that the greatest thing in this world is to love, and I hope that one day she will be well enough to show each and every one of you how much we both love and appreciate you all.
This quote reminds me of Carly, she has a spirit like no other (anyone with an understanding of the burning pain of CRPS may relate):
"All of the poems have wolves in them,
all but one -- the most beautiful one of all.
She dances in a ring of fire
and throws off the challenge with a shrug."
-Jim Morrison
So as many of you know Carly started Ketamine treatments back in October. Her mom helped conduct a successful fundraiser to get her to her first round of treatments! She has had 3 additional boosters (all requiring a drive to and 3 day stays in Sacramento). In her last update she had informed everyone of being approved for her disability and we were told that her backpay from the last 3 years would shortly be coming through. Her disability lawyers were paid the first week of December, yet the procesing center is "behind" and has yet to pay her or even notify her of the amount her backpay will be. When starting these treatments we did not know how costly they would be, or even how often they would have to be done.
While the financial burden is difficult to endure, the relief of the treatment is well worth it as Carly has been able to discontinue her methadone and liquid morphine and is only taking her muscle relaxers as needed. Unfortunately, the effects of the ketmaine slowly wear off and through this difficult winter, Carly is now at the point where her pain is 6-10 and she is wanting, but abstaining, from taking her meds.
It takes a strong woman to make the decision to deal with a certain amount of pain in order to keep the rest of her body healthy. It is so important to her health that she not have to start taking these medications again. The doctors are getting her in for her next ketamine infusion Monday, February 27th; which is very exciting! We are so grateful for the opportunity to travel back up to Sacramento but are stressed about how we are going to make it through the next few months as we wait on the government to come through with her disability and on her law suit to either settle or go to court.
The most important thing as Carly is receiving these treatments is that she is taking the necessary steps to help the treatments last as long as possible. This includes decreasing her stress as much as possible, doing water and massage therapy that her doctors have told her to do but insurance does not cover, seeing a holistic nutritionist to adjust her diet in order to avoid foods that are known to cause inflammation and flares (again not covered by insurance), eating a healthy organic diet, taking supplements and other nutrients like turmeric, curcumin, saffron extract, and kava that are also not covered by insurance.
One of the biggest stressors in Carly's life right now is finances. With having to fight for disability the last 4 years she has had to put most of her expenses on credit cards which she now struggles to stay current on with the little allowance she gets from disability. Because of this we can't even afford to get her a compact motor scooter so that she can enjoy going down to the beach, on a walk, or even to the grocery store comfortably. There are so many different things that are needed by a person with Complex Regional Pain Syndrome that the insurance just doesn't cover. We thought we would be able to handle covering these treatments up north but have realized that we need to be humble and come to our community and be open about our struggle. I know Carly believes strongly that the greatest thing in this world is to love, and I hope that one day she will be well enough to show each and every one of you how much we both love and appreciate you all.
This quote reminds me of Carly, she has a spirit like no other (anyone with an understanding of the burning pain of CRPS may relate):
"All of the poems have wolves in them,
all but one -- the most beautiful one of all.
She dances in a ring of fire
and throws off the challenge with a shrug."
-Jim Morrison
Organizer
Logan Burden
Organizer
Lancaster, CA