Tuesday, November 13, 2012

My Treatment Story: A Review of my Co-op.

Top NOTCH as USUAL: thanks to the PROFESSIONALS!

My apologies to the delivery staff for my messy apartment...LOL.

I haven't been feeling too good: combination of stress and winter weather hitting this person: and ID theft: fortunately what is the most important remains carefully protected.  Always.

I did as any responsible voter would and did not vote for the initiative, but less responsible parties obviously felt otherwise.

It seems that I do owe you an update, however: the excellent service, and phone calls and seeing how I was doing with beginning treatment with full-strength Rick Simpson Oil for RSD/CRPS, aka, Reflex Sympathetic Dystrophy, Complex Regional Pain Syndrome

After 30 years of this disorder-something you don't wish on your worst enemy, and this I mean with every bit of sincerity: and like I said, since the age of SEVEN I have had this: and everything but the hair on my head is affected: face, and internal organs, etc.  No, I am not hospice material..  I intend to stick around for a long time.

Watch grandchildren grow up and that kind of thing.  Help them learn the truth: and responsible ways of hemp use.  The reason?

Because what pays is hard work, such as with the friendly, HONEST staff at CCC, their caring and compassionate atmosphere, and that they have shown much compassion to me in the last ensuing weeks, and my gratitude is so extensive I wish I could thank you some other way, but this will have to do: unless.... ;-) (like uh, you need help? A college degree in nursing that I have no intention of taking part in: as they are now tied by ego)

Well, nuff said about unhealthy.  What is important is doing what makes you well.  That is what I term "Dope."  It is doing what makes one well.  I have also, by now, gastroparesis, and am well underweight, and now am finally gaining.

Finally worked up nerve and hired a NEW physician, who will not label me, and saw her today: and wore a sweatshirt sent to me by a friend who saw a photo of me the DAY after I began treatment with FULL strength.  It says "MMJ is hope for JJ" and nothing could be further from the truth.
My disorder has little out there unless you have a vested interested in veterinary medicine or ketamine-out of what I felt was lack of choice until someone important to me pointed out the obvious (that this is legal where I live, unfortunately now so is the stuff that should not be, essentially so it's especially important for me to go to CCC: the numbers game is far too important!!!  I for example, do not sleep for days if I consume too much (15% or more) Sativa, but it's good for a smile.  I have to watch the CBD's or panic attacks: CCC staff watches out for this for me: and recommends within these parameters for anything (a "PRN" is what I call it, LOL), and quite honestly, I am stunned...at the results since I began with CCC, and I believe my neurologist will be also on Friday.

I am having to still take minimal medication (but VERY much LESS toxic; and disposal felt great: shoving it across the counter at a pharmacy and telling them to "get rid of this garbage and don't refill a thing" felt wonderful.

Some days are better than others, and winter can be especially bad: especially in CRPS: and November is CRPS awareness month.  I wish CCC staff well, I want to thank you so much for your concern with recent events, down to my safety, and that I have what I need to get by for medication, and for some enjoyment.  And also, I look forward to future donations (in the morning) ;-), I hope to hear the phone... But every person needs their rest.  My ketamine friends think they are made well.  But every four months, they take their ports, and line up for it.  BUT NOTE: that is what is AVAILABLE to them.  I am fortunante to have something far better:



1.  A now functioning immunen system.  I contracted the flu.  Gone in two weeks.  For this girl?  A record.  For H1N1, who knows, but the doctor said I am good to go.  And had no idea as to why my speedy recovery.  I pointed to my sweatshirt, quietly ignoring the cup on the counter (smelled like chocolate, added); and I hope to soon be in the kitchen again.

Cleaning first.

2.  I have had x-rays and a bone scan.  The changes in bone loss have began to reverse themselves.

3.  I also had a gastroparesis diagnosis.  I now move, pass, and eat food (except with the flu: Pedialyte is what was advised, I listened and FELT better, so I pay attention. To what my BODY says),

4.  I have hair coming in instead of falling out.  Caused by the level of pain from CRPS; Google the "McGill Pain Index" and personally I believe pain to be subjective, and it should be THROWN out, because we are all different and handle things differently.  If my hair wasn't pulled back much of the time, or braided, 3/4 down my back since my shoulders in 01/12

5.  MY CAUSE is being treated, I feel, not covering it up by shutting ME up with shoving my body full of toxic substances.

I am FOR legalizing marijuana: for MEDICAL use-for people who need it.  Not those who abuse the process.  Or take a license, and oh, people would cringe.  Most of you know is the sad part.


The awesome part is even with bills as they are?  I have just enough room for some "extras" this month.  Thanksgiving, early Christmas?  I am simply grateful.  I feel human again.

Thanks yes, to the MMJ.

FROM CCC.  I would not recommend anywhere else.  Honestly, who else would tell you that "take the medicine (antibiotic) and call when the infection is gone" (until I discovered the Rick Simpson Oil cure for cancer, and wondered what it would do for me.)




I did see the doctor today: and she was surprised at how well I am doing , and a NEW doctor at that.  Why?  You guys and a couple others helped me realize something:  I deserve better than what I got.

No, maybe the RSD couldn't be helped: people don't know that as intensive as surgeries get, the chances of RSD increase to as much as 15% of people who have an elective orthopedic surgery, a ROM disorder surgery, back surgery: spine fusions are the worst offenders from what other CRPS patients tell me!!!)

But I feel I have a different outlook because I simply have realized, accepted limitations, and realized it all does not have to suck.  You don't have to lay on the couch with a pill bottle, digging out of it, or what have you; but simply just  take it, and continue on.  I have a friend who doesn't have MMJ available: she makes do with what she has to.

But inspired by the "medical housecleaning?" Yeah, I went through a "list" of docs or healthcare providers, and one by one, checked the names of those who are of the following categories:
  • Treats me like a number
  • Cannot remember who I am.
  • Doesn't even know what city I live in.
  • Acts like I am a drug addict.  I have not said "ANGEL" folks, no one is.  Nor have I said, "Throw me a parade"
  • Prescribed or does, any "therapy" be it any PT or OT, etc, or medication that is CONTRAINDICATED for my disorder.
  • loses sight that they too are ones that make mistakes
  • Treats me or anyone representing me as less than human.
Evidence shows CRPS is Autoimmune.  To do with the immune system and affects the neuromuscular system.

See the top for symptoms/basic info sheet on RSD/CRPS.

A video:

 

 
Working a miracle each day I can have less pain.  That is mine.  Thanks guys!!!. 






3 comments:

  1. A wonderful article but I am unable to get videos and my first attempt at a comment failed due to an error. Don't know what I am doing wrong. Will try to figure it out.

    ReplyDelete
  2. Thanks to the help you are receiving from CCC, your life seems to have turned around for the better. I am pleased to see a positive you and feel that it can't do anything but bring life's brighter side into your own. It is always better to be positive about one's illness than to wallow in negativity I think. When we are negative, and this can be brought on by many things, i.e. our doctors lack of care or improper diagnosis, family and friends treating us like we are not ill because we don't look ill, negligence on the part of the medical community in general, and other life events, can cause our illnesses to get worse. It seems that with MMJ replacing toxic chemicals, your life has really been much improved. Unfortunately, for others, our states do not afford us the right to use MMJ so it is not an option for everyone. We all must use the meds made available to us with care and caution. Be our own advocate as the doctors are not normally looking out for your interest unless you are sitting right in front of them, and sometimes, not even then. We all do the best we can and hope for that magic remedy that will make us well. A hard lesson to learn for many. Keep up the positive. It becomes you. Thanks to CCC for helping a friend.

    ReplyDelete
    Replies
    1. Kat,

      You are not with no power, sweetheart!!!

      But other elections, should we all live that long, God help us, to vote them out, and put MMJ in.

      It is quite active (hemp) in every single state: the difficulties lie in getting a good quality medication. Man, you guys withOUT the dispensaries and ZERO for qualifying patients??? Sounds like a mess to me!!!)

      Kat, as for the comments regarding my action, Kat, it has been extraordinarily difficult finding a set a physicians equipped to care for a patient like myself, who like you Kat: diagnostically complex, and a challenge, and to care for: not much different: challenging.

      Did you know that doctors call us, trained to in medical school, taking classes that are an entire semester's in length, that it's got us set up to fail with whichever physician: they are coming INTO: labeling us "a problem" patient before laying eyes on anyone does accomplishes exactly what? Zippo....

      Read up on Chronic Pain SYNDROME. That was where I was "hit below the belt" by the PMR doc (Physical Medicine and Rehabilitation) gave me at the CURRENT doc: who also shoved a medication at me that not only did I NOT WANT: but also was VERY VERY hard to dump.

      But I saw it this way. Use the law to my own gain: or continue the way I was. It wasn't living.

      I choose LIFE.

      Hopefully that helps. Maybe not folks who don't get why I don't want ketamine: but it doesn't mean I am not happy for anyone who makes a great recovery from this most UNNATURAL disease!!!! I am glad to help.

      And wish I could do more, save to tell my story, and maybe that of a beautiful green-eyed girl?

      Gentle hugs to ya all!
      JJ

      Delete