Going back to how I am going to present my story, I can't possibly go back in any sort of order, I'm going to go with whatever hits me that day and hopefully if people out there are reading this they will get something out of it. Not very long ago my mom decided to send me to get a second opinion, she is about to retire and wanted to make sure that my treatment plan was correct. I'm not even going to tell that story today except to tell you a tiny facet of it. This new Dr. ordered every test possible and mom paid cash for it all, in the end, the great "reveal" day I had been waiting for after comprehensive lab work, x rays, an MRI, the Dr. came out and grabbed both my knees and squeezed them very hard (I could hardly walk that day) and said "You have osteoarthritis in your knees". First of all my pain was so great I almost instinctively punched her in the face, and second, I've known that fact for years. Her plan was for me to go off all of my meds and "see how bad things get". I don't know about you but that sounds like a terrible plan to me. Just to explain my position and to describe my pain in more detail, I already have researched and planned how to go to Oregon and do an assisted suicide, I have had days that I didn't think I could make it through the day, not another hour. I'm not saying I wanted to die, I'm saying I can't take the pain. ( My close friend with another disease with chronic pain talks about days she has to keep herself from stepping in front of a train.) My family is what holds me back, my hope for medical cannabis legalization in my state gives me hope and I work every day for that goal.
My point to today's story is a little roundabout. I just had a full comprehensive set of testing done, I've had multiple images of various kinds, and I have been talking about severe back and neck pain for at least 8 years. Once I got to a pain Dr., which is a very long and complicated story in itself and includes the fact that my rhumetologist ignored my pain for at least three years and gave me tramadol and Flexeril for years, and even tried to cut me back multiple times, which she did, and I would call back and argue that I was in terrible pain and she would up me one 50mg tramadol a day again, I finally got to a pain Dr., I suppose I'll tell the "short version" of the story, about four months ago I had finally had it, my pain was completely out of control and I was in the ER on a regular basis with runaway pain and they were starting to not give me drugs, I understand that, the Dr. is supposed to take care of that. So, she, "most likely" aware that I used cannabis on a regular basis, reluctantly gave me a referral to pain control. I had to pass a UA first, so that was 30 days without cannabis, the only thing that helped my thru the pain, and then a UA, and then, her nurse would RX me something like 10 loritabs and on THAT DAY or soon after, the nurse would make an appt with a pain Dr. that was taking patients 3 months out. Explain that logic to me, think it through and find the compassion, because I don't see it. So, I took a home test and passed, then I took a lab test and failed, I waited another 10 days or so and passed (I only smoked a puff or two out of a one hitter a day before I stopped so I didn't expect it to stay in my system long.) I called my Dr. to make arrangements for the UA, all this while suffering in great pain, I couldn't think, I could hardly walk, bathing on my own was impossible, I was literally frantic I cannot begin to describe the pain I was in. The moment I passed a UA at a private clinic I called from the parking lot, the nurse called back a few days later, I am in agony at this point. I had no quality of life and was literally ready to die without help. The nurse said that I had to drive to another town an hour away and take another UA, the next day I called and the clean UA was on the Dr's desk and she had seen it, but she had worked a half day and was on vacation for three weeks and would have to fill the papers out for me to see her nurse for the one time RX of 10 loritabs to get me through while she made arrangements for my pain clinic appt that would be in about 3 months. I exploded. I was blind with rage and pain and I could not believe the entire situation. The nurse said in a hateful tone that I could try my primary and see if they could help so I hung up and called them without saying goodbye.
I called my primary, they have signs all over saying they don't do pain meds, I called and told the receptionist and told her my story and she said if I could make the drive fast enough they would see me at two. For a variety of reasons, no one in my family could/would take me, I got in my car with no ac, in blinding pain, and I drove like a bat out of hell to the Dr.office. I got a lot of hell from certain people that if I was in "that much pain" how could I drive? My answer is self-preservation, I could not take another day and the truth is I should not have driven, I almost had more than one wreck, but I made it, and I would not have endured the pain at that level much longer. I had been a solid 10 for days. My family asked if I needed to be checked into a mental hospital for being Bi Polar.
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| Waiting for the Dr. |
My Dr. office is a teaching school, I see residents, they are overseen by other Dr.'s. I told my story to the resident as best as I could and she examined me, my knuckles, my wrists, my knees. Everything was swollen and red, the bones white almost showing through the knuckles the skin was stretched so tight. She said she didn't know what she could do, but she would get her supervisor to come look. He came and looked me over a few minutes later, he was very quiet, a few sighs, an umhm or two, he looked into my eyes a long time. He said they were going to talk and be right back. I sat and waited, waited and worried that I would get no help staring at the sign; "WE DO NOT RX PAIN MEDS" on the wall. The door opened and the resident came in, she said "I've spoken to Dr. _, he agrees that you are in dire need. Based on your obvious physical deformities and level of pain and against all protocols I am prescribing you _, it is a one time RX and I suggest you use it sparingly (it was for thirty hydrocodone if I remember right) We have already put in an emergency referral to our pain clinic, but I don't know how long it will take, but the urgency of your situation has been expressed to them". I'll never forget those words, literally the first time a medical professional had actually had shown true compassion through years and years of suffering. So, I thanked her profusely, with no idea how long this referral would take but I knew help was coming, I hoped anyway. So I checked out with tears rolling down my face, something that had been going on for weeks, just tears rolling, nothing I could do, I just endured pain for so long that tears just came and went no matter what I was doing, not actually crying, just suffering. If someone saw me and asked, I said ignore it and I tried to just move on. In any case I drove an hour home, straight to the drugstore and took the first pill with a drink out of the cashiers soda. She offered it to me
The pain meds took me off of 10 and in a few days had me to maybe 8.5 and my Dr. appt must of been on Thursday, because the next day, Friday, the pain clinic asked if I could come in on Monday and I took the first appt I could get. It turns out that the location of the clinic is an hour and a half away from home but I'm not complaining. I saw the Dr. and he seemed very nice and he asked me how I made it on tramadol so long, he said I would get better use out of it by throwing it against the wall to get some anger out. He upped my hydrocodone to 4 10's a day and ordered an MRI if my neck and spine. A few weeks later I found out I have 7 fractured vertebrata, he said they look like a hammer had been taken to them. I'll go into more detail later but since then I have had two cervical facets done, which are shots into the base of your skull, the joints there, and the experience will need it's (their) own story. I was amazed at the amount of pain that went away after about the first week, and that I was able to turn my head significantly more. I had no idea. I am currently recovering from an ablation on one side of my neck. It is a live x ray, they give you some meds to chill you out a bit and inject contrast dye into the nerve and buzz it with electricity to recreate the pain and make sure it is the right nerve and then they hit it with electricity and burn the nerve to sever it. Apparently they grow back so this will be somewhat of a regular procedure if needed. The report from the ablation reads something like this, and I am missing parts and looking for the first paperwork from the MRI, however, I have a note that I wrote a friend I will put what info I had at the time, remember I have Rheumatoid arthritis as well as osteo, and my Rhuemetologist says psoriatic too, but I'm not sure you can have both, but I am not a Dr. so C1 C2 C3 C4 C5 C6 C7 T1 are all fractured. I have marrow fat leakage, Schmorls nodes, sprurring on several disks, and foraminal narrowing, as well as some kind of blood sacks or blisters. But I have had so very many images over the last few years and no one saw these things? Not even my rhuemtetologist? Not even the second opinion Rhumetologist? What is wrong with these people? I go back all the way all those years ago and I think about my primary care Dr., the one who one day told me that nutrition didn't matter when I had brought in a huge book of nutrition information and a list of my symptoms trying to find out what could be wrong, just hours and hours of research, that she wouldn't even look at, one showing that I was SURE I had a severe Vit D deficiency (I did) and she refused to run bloodwork, and of course dismissed once again my cry out for pain relief because she just knew I was drug seeking. If I wanted to "do drugs" I could have just bought them and not gone thru any trouble to get them, but I knew something was wrong with my health and I needed help, literally Dr. after Dr. has ignored my cries for help. That's all I have in me for now, maybe I'll come back later today, but my heart can only take so much of revisiting this, and I am still living it, although with some help now, I just can't trust that it will continue. I don't trust Dr.'s anymore, the more you hear, the more you will understand.
