NOT DEAD YET! surprise

 Hello, I am writing this in a mental fog this afternoon, after 13hrs of sleepless sever lightening strike pain, but I feel I must say it, because there are people who are not in touch with my reality...in fact some believe I "Exaggerate" my pain.  Including some medical professionals. I sent this letter to my current ARPN, who has once again reduced my medications to in fact, less than half. 

Friday. I began experiencing breakthrough pain shortly after our last meeting, so when I returned home, I went immediately to bed and rested. The pain intensified at 9pm.My Rt kneecap was assaulted with sharp electrical shocks three zaps in rapid succession, every 4 seconds. This continued for 13hrs, and finally, I got three hours of sleep. I am physically and emotionally wiped out, yet I have to eat and attend my responsibilities. I hoped this would have reduced in the past 90+ days, but that is not the case. PLEASE ask around for any alternative pain abatement protocol. This was a new high having THREE break-thru episodes lasting over ten hours each in one week, and frankly each time I worry if it will be the last time. It really is that horrific Please help me.

   well, it is a seemingly beautiful day, I had plans. I am very hungry but physically limited to just how well I can perform daily living tasks. I know I cannot take any unnecessary chances as I am alone here, and cannot afford a dangerous fall. Of course, I will live, until I can't, but know this recent change to my health care has had enormous negative consequences.

     PLEASE, any help in finding a medical professional or care team that can take me off the strings of medical puppetry (ineffective medications), and restore a quality of life to where I can get back to being a productive valued member of society...give my live restored meaning....do try. I work on this whenever time allows, but at 4-6hrs daily, I am falling far behind on even the most basic of human needs we take advantage of, believe me, just being able to do want you need, when you need to do it is so underrated. I cannot even make a small meal.

Ed K

marginalized

patient

I am sure there is something that can be done. but who will step up?

kill all the irrelevant people, have your Doctor do it!!

 what have you been doing with yourself? I haven't been very lucky at sleeping...a lot of pain everyone has it, but there is little help for us these days. Covid and opiode being enemies of the Sate

if your not careful you will end up in a rehab/nursing home like "Town and Country" in Lowell where you will definitely contract COVID...I guess? eating and farting is probably all you can do. but at least you have a half change of surviving

  Me?  Ha Haa. doctors are being real shitty. they do not give your prescriptions any more, they fax them to the Pharmacy, so you can't even see how fucked up the refill dates are. Mine is going on 33 days and still nothing (on a 28 day refill)

    also, they send an email for a confirmation you will make the appointment on time, a week early!. question: if the appointment is a 2:30, why must I check in by 2:15...and at what point am I technically late? and then, why do I have to wait in the waiting room for 50 minutes and then in the exam room for another 20 minutes? At what point are THEY late?

  and I predict...yes, I said it...we will have to get a covid test every month two days prior to our appointment!!!

 anything and everything they can do to make it damn near impossible to get treated (poorly).

  rather talk on the on the video, but this works.

you can hate me,  it's easier.

phantom pain lives again

Wednesday, I try my best to be positive while keeping a realistic attitude about my disability, But I am failing, When we discussed a reduction in pain medication, I already done this in the past, several times. But I tried to say to myself, "This time will be different",

    Sadly, it has not. The dosage or Oxcodone (30mg generic, 80% effective) I received was nearly effective, as the medication claims to give 4-6hrs of relief, and at 5 per day, there were many times when the pain took over. Now, being on a reduced dosage and asking it to relieve as well,,, it simply cannot,

  the Methadone, again at 5 perday was effective at keeping the withdrawal effects of opiodes at bay. Now at 4.2 pills per day, or 42mgs, I do get to experience early withdrawal symptoms practically everyday,

    I thought, "an adjustment period will be necessary", The only adjustment I have made is choosing what day and for how many hours I can give pain a good fight. I have now reduced my days to every other day, and for only 4-6hrs. It's very difficult to get all the necessary things a person must do to stay healthy in that short a time frame. 

     Being a "People pleaser" personality I tend to agree to things that I know to be counter-productive and at times even wrong, that is why I decided to take this time to write my thoughts and feelings,

E-36 mobility scooter Brake issue

OK, so this e-36 E-48 etc. three wheel scooter is fast, faster than a wheelchair, BUT If you live in hill country it will try to kill you...If you have one you know exactly what I am talking about. I had mine for a few years and at one point I just wanted to give it away, and they are not cheap, so here's what I did.
        so, what I decided to do is put a temporary kill switch on the handlebars to shut off motor for coasting downhill. release the button and the automatic electric brake will stop you...if that's what you want.

  But who wants to stop, when they simply wish to not go as fast down a hill?

 well, that's what the stock E-36 does. Stop and go all the way down a steep hill, and it almost threw me over the handlebars, or at least slid my ass off the seat. STUPID design...but then again, the hand brakes can barely stop a moving scooter...at my age.

   It is not an electro brake as in a wheelchair, or I could had removed that easily, 

 again, if you could ask an engineer or technician how a person can bypass this "Auto-Brake" system and yes, violate their warantee, I would appreciate it,

I am sure with a little effort you could find me an answer. I'm thinking a wire in the throttle? a different hand throttle? so off doesn't mean brake.

another pain patient .... who cares?

Well, nothing new to read here. as everyone knows, no matter what chronic illness or malady you live with, NO pain doctor will prescribe any opioids...even if they work for you. Yes, you can read all about it. Opioids are bad. Get the facts. It's PROPAGANDA. and if you buy into it, you're a fool.
but what about these pain patients, that until now were treated with some dignity and/or respect? what about them now. unless it's you, those 2% of the population are screwed. watch the suicide rates climb and sure, blame that too on opiods. It's easy!
   I believe this will all come out one day, and everything will be OK...not in ours lives! but maybe by the time they too live in unretractable pain things might change.
 Listen, someone make s a pill that is somewhat effective, let's put an end to that! that will cure everything,
Lucky for them pain patients don't live all that long. I heard of someone else who believed all pain patients (And Jews, and society detriments) should all be extinguished. That worked out great, almost as well as prohibition.
 so how long can the silent suffers stay silent? It's a real problem when some folks speak up, so just shut your mouth and as long as it doesn't effect YOU personally, go along with it all.
It will make your life easier.
    How's that working out for you?

CVS sux

I was just on Discus something like that. wrote a post and could not even post it!
so rather than throw it away,,,and I should cause I am as mad as hell.
here it is for your perusal.
 
I agree with everything I read here so far, I can attest to seeing this crap first hand, I been having problems with my local CVS ever since an Indian pharmacist took over (You know, the stereotypical) dark skinned fella, nobody can understand. anyways' last week he told me he didn't care when my Doctor wrote on the RX about when HE wants it to be filled...he wouldn't do it! Now he's the hero! I went an extra few days in unnecessary increased pain, that was discussed and rectified by my Doctor, so, is that right I ask? Or how about, I cannot even drop off any pain RX within 24hrs of refill date. So, ..... I can drive by and say, "call me when it's ready" (anymore) I have to make an extra trip, 24hrs prior to refill date. If I didn't absolutely need pain relief, I wouldn't even bother with the Bullshit patients are being put thru now days. I have to piss in a cup, like a criminal now! I know I'm not saying anything everyone already knows. It just sucks, and I cannot wish the screaming, debilitating stabbing electrocution, pain away. I am getting to old and weak to keep up with this charade. So what? street drugs? death? I'm thinking alcohol. Poor solution to what already can be dealt with efficiently. as it has for over ten years now! Shame on you Government. for shame.

PLP.

Dr. D. Good visit. I am sorry to report to you after leaving your office, then visiting my Mom at the nursing home, I came home to begin a 17hr marathon of screaming. I just got out of bed now and am so wiped out from exhaustion that I am having a hard time addressing what I need to do. I know I haven't written you every time I have a PLP attack so I thought we should begin recording some sort of record. I did take two extra Oxycodone 15 mg, and three more methadone 10gs during this recent episode, and want to remind you that it is not drug seeking behavior, rather pain relief behavior. again, just a reminder, I have been on  schedule of chronic pain medication, like oxycodone, and had additional strong medication for acute breakthru pain, like hydromorphone, or fentanyl sublingual. Till more recently, a stronger course or chronic pain which did in fact reduce bouts of acute pain, which I did tolerate well. all I can do is relate treatments I been exposed to and their relative effectiveness. And report where I am today. Finally the pain has abated, and left me both physically and emotionally drained. This generally takes 1-2 days to recuperate from. Unless another breakthrough episode begins before that, and lately, that is not out of the realm of my reality. I am sorry to be such a burden of a patient especially in the opioid crisis. It was never my plan. I just am the luckiest guy in the world. Thanks for listening. Just a FYI.