I am 42, and I have had CRPS or at least the diagnosis was given to me only "recently" which is a long story of abuse that no one needs to hear about.
My insurance is actually as perplexed as I am, it turns out!
Currently, I am hospitalized at this facility and on admission with a height of 6'0 1/2" I weighed 78.8kg (about 148 pounds-for a woman of that height, it is a borderline low on BMI charts-most of us know are for people who are teeny and can tolerate a level of existance of a Barbie Doll. I happen to have the same body frame of my father who spent 26 years working in the military, then 20 in another very physically demanding field.
But that was a toxic thing and has been shut down.
My care-if one calls it that-is less than what I pay $40 to have my cats seen at a veterinarian.
It is colored also by the fact that yes: even though in the 1st state to legalize marijuana entirely-I maintain a prescription (and voted against it-it is dangerous on the street and easily available to children and can easily be dangerously mixed with anything) and do not use a lot: yet physicians (save one or two) continually imply my "heavy illicit drug use" though no drug toxicology screens have been done according to hospital portal system.
I have photographed myself as best I can, and put together some pictures, and a series of You Tube videos that you each may view to show what kind of nightmare my life has become.
I have been recommended for a j-tube, as well as nutrition support in a similar hospital stay: though this time, nursing staff really have (for the most part) been very supportive learning what they can-and the first hospitalist was a wonderful man.
I am asking for your support. I know no cure is available for RSD/CRPS, and have no illusions about life with nutritional support. My insurance company is continually frustated as well by the fact that I cannot seem to gain access to my care.
In the last year alone the following has happened-this is not a play for sympathy-and probably similar to the struggles of many:
January 6, 2012: A local ER lanced a CRPS blister for a scalpel-no anesthetic, and then threw me out by four large security guards, each weighing more than myself alone.
February-April 2012-I underwent a series of nerve blocks and brief treatment with nasal spray ketamine: which did not help, and second, caused a hypertensive crisis. When I learned that the number of nerve blocks exeeded by nearly twice, depending--they did a total of 5 because I did video myself after each one-and honestly not knowing what level of damage that does despite my own medical training, I immediately stopped seeing that provider-what I uncovered later makes me want to be sick. It also has put me in a wheelchair. That the thing does not work matters little-I go few places.
In May I requested through the then PCP that the port that caused my full-body spread-at least recieve basic port care. It has also failed-is out of place and despite TPA remains totally clogged and must be removed.
By then I was completely phobic of anyone with an MD, save the neurologist of 15 years that has recently decided I need a PCP (I have one now and have maintained one through this facility because I have NOWHERE else to go.
My medical treatment has included recently the use of some opiate: reason being? RSD/CRPS is not the only diagnosis I have. I have two ruptured discs in my lumbar spine, a thoracic scoliosis curvature, and none of it was ever operable. Several vertebrae are bone on bone, and I do not want surgery-it is way too risky with what follows:
My gut issues date back to high school, but in 2003, a surgery (emergent) had to be done, and 3 days later the wound was infected with MRSA, dehisced (opened up) and by the time I really remember too much, I was in a Houston hospital, under the wonderful and compassionate care-an 8 week stay at Memorial Hermann Memorial City Hospital followed, and I was then stable enough to return home for the rest of the treatment protocol for that level of infection.. A miracle that I survived-definitely.
I haven't been the same. My weight was up and down for a time, but began a precipitous drop in 2011. But at first, the drop was not as severe. Since January/March of 2012, I dropped from about 220 pounds-and yes, overweight, to a current 77kg (or 148 pounds or so, but the admission on the 15th had me at 78.8-instead of rounding up? It was rounded to 78 even. Even if it were a 1kg weight loss, then I wish to know how one loses when urinating regularly-so kidneys are not a problem-that they blame ALL of it on "water"? I am not swollen-etc, and even now:
I wear only fleece clothing, the allodynia settled in my tailbone, requiring that I be provided with an air mattress, and essentially since a PT aide pushed me too far in October, I have been bedbound. Everything has had to be delivered, and I cannot get by without some kind of help-or go anywhere.
All of this is at my expense.
I was turned down by state for a caregiver: they said I do not have RSD, that I am mentally ill, and need to be on psychiatric medications, and I refuse to take them, save one that is actually prescribed for reaasons to augment the 18mg/day of Zanaflex that only barely controls the spaciticty. Other meds used to help. Now they don't because basic nutrition is necessary for anything to work.
As of yet I have to be provided with care best described by a friend as "humane" because I was forced to cut off stressful contact with the majority of my family-and I truthfully cannot find in myself the strength to handle contat with them. Besides, their level of over-involvement is responsible for why I keep am being thrown into the mental health pool. Simply put: it is toxic to me, but each time I won't accept a ride from someone who requires me to check with them before any MEDICAL appointment is made-I lack transportation otherwise. At my age, I owe him no checking with before I see a necessary appointment with a PCP-let alone the neurologist: who recently shut me out-without so much as a word.
I finally was cued in as to why-that he feels "A PCP needs to manage my RSD"
I read between the lines, but even the nursing staff here at the hospital is concerned for my welfare-because I am terrified of the current plan for them to send me home-with NO coordination with my home health.
I had to fight tooth and nail for it. For the signature at the bottom of a page.
I am trying to convince these people that a newly installed-whatever-PICC should at least be used for supportive nutrition therapy, yet the GI department wishes me to try months-as much as a year or possibly more: of "testing, diagnosis, and multiple medications" that research shows stop working at some point.
If I cannot keep in food or fluids, I feel that I am not ready to at least be denied nutrition support.
I am going to try and include a couple videos from You Tube and a "Smilebox video" that shows the deterioration just in the hospital.
The first hospitallist was a kind man: concerned about me going home with no nutritional support: None of my medicines that PREVENT even the CRPS pain will work without it.
The pain alone is bad enough. Combine it with the fear of doing this essentially alone-as the woman from the state was insistent because of the false information they were provided with by someone who doesn't know better than to trash another person's name let alone that it isn't okay to do to family.
He is out of my life for good, but she insisted that to get a caregiver, I accept his help.
To get the cabulance to medical appointments, I need a doctor's signature stating medical necessity.
At 77kg and dropping, I am uncertain how anyone things I will survive a year when anything put in my mouth-due to the severity of the reflux, a hiatial hernia, and gastroparesis, I have yet to have a tolerable day pain-wise, to me though what is worse?
The overwhelming idea that I travel several times a month-at my expense (on SSDI) and the round trip cab fare alone (no Medicaid transportation is available because I "make too much" and aside, I could not take my wheelchair-and when I use the cab driver I do-it is half the price of anyone else.
One-way into the city to see GI? It is over $100-with my regular driver. I have not had the volunteers that are supposed to be available to me like my neurologist so much as return a call.
Plus they cut off any assistance I had with chores. Why? Guess.
But what truly scares me: no ride to the appointments-the stress of going, and doing it with nothing to feul my body. I don't see how in the world I an even withstand today-and still not sleep.
My teeth have been ruined by the constant vomiting, plus the visceral reactions to the levels of pain I get. But the local treatment is already listed:
Nasal spray Ketamine.
I reacted badly to both. Nor do I wish to travel like this-out of state-and since I want simply to be as comfortable as possible while living what life I can: I simply ask that you sign this petition to push on them the importance of SOME nutritional support if I cannot keep in so much as Ensure. I can't do this alone now.
I ask for your support by signing this petition.
Thank you for reading.
This petition closed over 2 years ago
Right now? I don't think the McGill has a rating for the combination of pain that I am in: one medicine helps. Request...
Right now? I don't think the McGill has a rating for the combination of pain that I am in: one medicine helps. Request denied.
NUTRITION support: request denied.
Neurologist of 15 years: walked away with no reason.
But so far: my requests for another hospitalist has gone ignored-as has for a GI doctor who will look at say:
That I have had 24+ abdominal surgeries-all were necessary medically-but the complications alone are likely responsible for the current problems as well as the full body spread from a port that was NOT sutured into place resulting in my own guess and what the vascular surgeon refuses to say outright, but all but admitted: but was shocked that one of the hospital's own PCP's. He asked who had denied my port care, and seemed surprised.
I am sorry for her if there are repercussions professionally but as much as a horrible thing as it sounds? I simply pity anyone who cannot have enough foresight to realize that I needed some kind of venous access.
Naturally she was in favor of the mental health thing: how many of YOU are tired of it? If anything: sign for that reason-or that other treatments be made available-but even the area teaching hospital has little to offer besides prescriptions for medicine that makes me sick (the ketamine) and also others that have been very hard on my system.
But watch even just the first video: and if I can, I will post the other-and it's a more detail of just the past few days.
I am asking for nutrition support being initiated before discharge. I am way too exhausted and weak to go home in this condition, I don't think that any medication will work without some intake of protein.
Labwork has not backed it up to the degree they want because early in my disease, or diagnosis-I have since learned that this goes back as early as 1983 possibly even. My first sympathectomy on the right knee I larned was though successful, in terms of pain: I lost motor function to some degree with that alone in June 1994. Another (now deceased) doc suspected this as early as 1989 or 1990.
I don't forsee much treatment for the GI issues being successful without nutrition support.
Second, if I am too sick to get all the way to the bathroom, and have a collapsed hip I guess that the hospitalist, as in 2011 over a fractured tailbone (why the allodynia settled there) and wanted to put me in a LTC facility for that-when after a short time, I was okay.
The slideshows, if time is available should be helpful
With the one medication that would be helpful?
They refused to prescribe it while in this hospital because insurance won't pay for it at home bcause I do not have cancer.
We all know pain with any disease can be just as bad.as any other.
As many signatures as I can get-any help is appreciated.
I always thought humane care applied to animals.
Now in healthcare-people too.
Thanks for as many signautres; please share in groups, friends, whatever it takes. If you suffer pain-RSD, arthritis, etc? Please share this, sign it, send it to friends!!!
My life depends on it. If anything, a HUMAN life does. That would be reason enough for me.
Even if you don't know me, a common thread, is we've all had pain in our lives-whatever the cause.