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X is for DENIED (Sigh, rejection sucks)

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I could have done x-ray for X, because this is a medical blog. Instead, today, I learned something that’s been bothering me since I read it, and I’m going to share it with you. So that you understand the X reference, I’m using it like this: You know how when you get something wrong on a homework assignment, the teacher would mark it with a big red X? Or when something is denied in a box you put an X but if it’s approved you put a check? So when something is wrong, or rejected, or denied, you mark it with an X… that’s where this X is coming from today to finish up my A-Z challenge in an untimely manner.

So what was my big red X?

Well, before I get to that, let me explain about my pain management issues. When I was with my old doctor, she believed I was in pain, had done a CT and MRI of my back and saw proof of that pain, along with my other pain we currently call ‘phantom pain’ (more on that in another blog) and she gave me pain medication that, when necessary, greatly reduces my pain and improves my quality of life. I was quite happy with this pain medication. On a bad day, I might take 3 pills all day. On a good day, I took none. I had more good days than bad days. I took fewer than 20 pills per month, total, both good and bad days. A prescription of 120 pills, which is what she gave me, would last me about 7-8 months (most days, I’d cut them in half and only take a half.) Over-the-counter meds did not help my pain. Certain prescription non-narcotic meds we tried did not help my pain, and some of them gave me bad side-effects. The only thing that helped my pain were steroids (which can only be very short term) and Lortab/Vicoden. What she gave me was actually Vicoprofen (lortab with ibuprofen instead of Tylenol)–she’d give me 10s, and I’d cut them in half, and 120 would last me about 8 months.

The only side effect I had was I sometimes would get a little loopy when I’d take a pill, for about 15-20 minutes. At first, they made me sleepy, but that eventually went away. I took them like this for over two years, and they worked beautifully. Then, with the acute problems with the pulmonary embolisms, I switched doctors from the clinic in Texas City to the UTMB clinic in League City, because of the specialists I’ve seen in hospital were part of UTMB and I liked the care I received there. I switched my primary care doctor to UTMB too, so I could keep all my care in the same office, same computer system, etc. AT the same time, my doc moved to an urgent care center, and she wouldn’t have been able to see me any longer as a regular patient anyway, since she’s not doing primary care any more.

She wrote me one last prescription for pain meds, which lasted me about a year–she prescribed them in July 2011 and I ran out in July 2012. I went a little while without any pain meds, but the pain worsened and wore on and then when they started to work me down on my steroids, the pain became acute. I sought treatment for my pain, asking my doctor for assistance. She tried to get a referral to the pain management clinic at my doctor’s office. The pain management clinic would not hep me without a CT or MRI of my full spine. We ran into three problems with this: 1) I could not do a CT because with the PH/CTEPH, I was unable to lie flat on the machine to do it 2) I could not afford to do a full spine upright MRI (this would be three MRIs, with each one costing about $1800– so $5400 for all three and 3) I had no insurance to help pay for this test.

So pain management denied our request for referral, after waiting three months to get an approval from them (you see, pain management takes the case before their board and the board decides which patients get approved–so each time we’re referred, we have to wait for the board to convene). So we asked again, offering the CT and MRI I had gotten in 2010, prior to the CTEPH, as diagnostic proof of my pain and need for pain management. They said they didn’t want to see my MRI, because it was too old and I needed a newer one. We tried to explain the reasons we could not get a newer one, and apparently, they didn’t care.

So a couple of months ago, I had an acute flare-up of my back again, really bad, felt like glass, couldn’t move, was in horrible pain–went back to the doc. Doc put me on tramadol until he could complete the referral. We explained about the CT and MRI and he said, “You shouldn’t need anything more than an X-ray….” so, he sent me to the imaging center, I had my X-rays done (several of them I had to stand for, and it was excruciating–I was in horrible pain, trembling and shaking so badly I was sweating a cold sweat when they were done)–and we waited. Results of the x-rays came in showing the dextroscoliosis of my lumbar spine, dextroscoliosis of my thoracic spine, disc degeneration at all levels of thoracic and lumbar, disc dessication throughout the lumbar region, end plate sclerosis, arthrosis, stenosis, hypertrophy, and a few other wonderful words… those results were forwarded to the pain management clinic. In the meantime, I was to take the tramadol, stop weaning on the steroids for a while, and wait.

That might have worked, since taking the tramadol did help with my pain. I was quite pleased to learn it helped too. I was worried it wouldn’t, but it worked beautifully. Except, I couldn’t sleep that first night I took it. I was hyper and a bit anxious. The second night I took it, I was downright anxious and I was starting to itch really badly. The third day, I took it in the evening, and the itching got so bad I couldn’t stand it and the anxiety had me rocking in my chair. Messaged the doc on MyChart and stopped taking it–went back to having pain instead. Doc suggested I increase my dosage (said sometimes it works better with fewer side effects at higher dosages) and that I take Benadryl with it to help with itching. I did what he said. Pain killer properties worked even better at higher dosages–I was almost in no pain when I took it for a couple of hours, but the itching got a lot worse–so bad it woke me in the middle of the night scratching like crazy. I also was having trouble sleeping, and benadryl didn’t help with either problem.

Wrote the doctor again and he told me to stop taking it. But when I asked what I should do for pain, he said I’d have to come in again to discuss that. Well, I’m cash pay–no insurance, and every visit ends up costing between $150-300… and I was JUST THERE three weeks prior for THIS VERY REASON. If it were any medication except pain meds, I guarantee you they would have just called a different medication into the pharmacy–I know this, because it’s happened with other meds. Just call the pharmacy, change the med, go pick it up, discontinue the other meds. But no, not with pain meds. I have to pay again to get another med. I decided to try to tough it out and wait until we saw what pain management said. I had upped my steroids some and the pain was better, so I figured I could stand to wait a while.

Well… that was last month. Pain management finally got back to the doctor. No one has called me or said anything to me, but noted on my appointment follow-up on MyChart online, the referral says, and I am quoting here:

“Consult reviewed by Medical Director, Dr. XXXXXX XXXXXXXX.  At
this time, there are no resources available to assist with your
patient’s complaints.”

I don’t know what, specifically, this means.

I can tell you what it means to me: No pain management.

Even though I’m in pain, and they can see that and know that, they will not offer me any pain management services–why? no resources available to assist with my complaints? I’m complaining that I’m in pain. A pain management clinic has no resources to assist with a pain complaint?

I’m very confused by this.

So I spent part of tonight crying. Not because I’m in pain. Not because they won’t help me. I don’t know why I was crying. I know I’m angry and I often cry when I’m angry. Maybe that’s it. I don’t know. But I don’t understand.

And no amount of rationale, explaining, or anything else is going to make me understand why it’s taken me two fucking years to get this rejection and why I’m expected to live in pain through all of this. I’m so sick of trying to work through the system. I’m too tired to work the system. I’m too sick to beat the system. And I’m sick of working through it. Is this how the system wins? They beat you down until you just die from sheer exhaustion and then incompetence, and then cross you off the list and move on to the next person?

It shouldn’t be like this. It shouldn’t be this way. People shouldn’t fall through cracks that shouldn’t even exist. People shouldn’t be left to die and suffer when there are ways to prevent that.

It shouldn’t be like this.

Love and stuff,

Michy

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One Response to “X is for DENIED (Sigh, rejection sucks)”

  1. Farah says:

    I’m so sorry, Michy! 🙁

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