sometimes something wonderful

I spent lots of time this week struggling, really struggling, just to get some medical prescriptions renewed and get a blood test result sent to the right office.  Three prescriptions are meds I have been on longterm. The refills had lapsed.  My clinic has a schlerotic, understaffed system for what should be, for a health care clinic, a routine task:  renewing ongoing meds.

There are some stars on this clinic's staff. One is a nurse named Michael. He listens. He is impeccably courteous and attentive. And, usually, he gets things right. Last week, however, he made a dumb ass mistake.

I lost my old glucometer (the machine to test my blood sugar levels) so I needed a new one, which means I also needed all new supplies:  new test strips and new lancets to poke my finger to get blood. I think everyone knows that it is a standard paradigm in medical care in USA that a medical doctor has to initiate a new prescription. Michael, for some reason, called me, after the customer service rep had promised that my doc would write the new scripts I needed, and he insisted that the pharmacy had to initiate the new prescription.  I challenged Michael, only lightly, because he seems to have it totally together.  "I am pretty sure that this counts as a new prescription and I am positive," I said to him last week, "that a doctor has to start this, not the pharmacy." Michael was insistent.

So I went to my pharmacy, where I have worked to cultivate friendly connections with the overwhelmed staff.  I explained Michael's instructions. Megan, the pharmacy clerk I know the most, sighed and said Michael's request violated their protocol but she would fax him a prescription request. It took her a bit of time to get all the new details right -- this is the kind of thing a doctor is supposed to know, not a pharmacy clerk.  And Megan could not determine how many times a day I test, that is definitely a doctor's decision.  I saw her send the fax.

The fax never arrived at my clinic. I waited a few days, went back to the pharmacy, went to the clilnic. I was polite with everyone I talked to.  I spoke gently, and it took a bit of effort, because by now I had not tested my blood sugar for over a week. I have recently changed my diet significantly.  I need to know what my sugars are doing. If they go too low, I could pass out. If they go too high, I could pass out. Not to mention have a stroke, a heart attack, or go blind.  If my body chemistry went kerplooey bad enough, something awful could happen in seconds. But I worked to keep my anxiety out of my voice.

Megan could not give me the stuff I needed without a script and no one at the clinic was listening to me. So I went to the clinic and asked to speak to the triage nurse. They have a nurse whose job it is to deal with just this kind of thing, little glitches that someone has to become aware of before they can be dealt with.

The nurse was initially abrupt. My doc was not working that day, so she was not my doc's nurse and she didn't want to hear my long story. I politely asked her to listen to my whole story. And, with some pressing, which takes a toll on me, she listened.

Then, bless her, she phoned in a prescription for my testing supplies even though my doc was not in the office. She just did it, did the right thing.

Over at the pharmacy, the pharmacy manager and Megan have been dealing with endless Medicare B audits. Medicare B pays for all diabetes testing supplies. Medicare B has been giving this pharmacy a hard time about test strips and lancets. The drug companies, by the way, change the designs of these babies constantly so they never become generic so they can charge top dollar, which is why people need new machines:  the old machines eventually don't have available suppplies because they go generic and the drug companies drop them for newer, patented test strips. All the supplies do the same thing but the designs change:  a lancet, that simply pokes a tiny hole in m finger to get a drop of blood is redesigned so it no longer fits in my old lancet poker.  I hate this kind of thinking. If we really cared about health care costs, wouldn't it be prudent, with so many millions with diabetes, to use generic test strips, generic lancets and standard machines. Diabetes doesn't go away. The drug companies want to gouge diabetics, insurance companies or Medicare B, forever.

My pharmacy has been audited and just yesterday, someone at Medicare told Joel, my pharmacy manager, that Medicare B would no longer accept faxed prescriptions. He was told he could only accept a handwritten prescription. Most medical prescriptions go through computers these days. Everything but Class A narcotics go to the pharmacy online. Now, at least in this area, at my pharmacy, the prescriptions for the test supplies have to be in writing. They are treating medicare supplies like Class A narcotics now. Geez. Maybe there is a blackmarket for these supplies?  Maybe folks with insurance get maxed out scripts and then sell test strips they don't need. You can go online and find places that will buy you unused testing supplies if the supplies are still 'good', if they have not expired.  I would never do that. In fact, I have a bunch of test supplies from my old machine, which I lost. I am going to walk over to the free clinic in Berkeley tomorrow and offer them my new but unusable strips. Lots of folks still have the old kind of machine like the one I just lost. I did not lose it. I left it in a hospital room when I was there overnight recently. The staff said no one found it. But I definitely left it on the nightstand and someone definitely took it. These things are worth almost nothing.  I guess some people steal without lots of thinking, a theft of opportunity, and then later try to turn their stolen property into a few bucks. My old machine was almost ten years old. You can't buy them anymore. It can't be worth much.  But it's gone.

I know how boring this stuff I am writing is.  The unboring part has been, for me, that it has been very stressful.  I have wanted to just give up.  I should have pressed this a week ago but I didn't have the emotional resources to push last week so I let it slide. This week, I had to force myself to force this issue. The system makes it so easy to let things slide.  No one wants to talk to me. And, as far as I can tell, at the clinic, almost no one does what they tell me they are going to do. What kind of people do that?

Sometimes something wonderful happens like the nurse who phoned in y prescription.  It still makes me feel sad -- I have my test supplies now -- to recall that she stepped out of her safety zone and called that script to the pharmacy to help me. But that was the day Medicare told my pharmacy guy that the script has to be in writing now.

Yesterday, first I dealt with getting a prescription for lovenox. I am going to have a surgical procedure next week. I had to stop taking my coumadin yesterday, which means I need to inject lovenox for seven days. This is  a grim thing to do. I am used to the very small, light insulin needles. The lancets to poke blood to glucose testing are a teeny, tiny prick. But these lovenox needles are fat needles and it takes it out of me to do it.  I absolutely did not feel like fighting the system to get these needles.

And I did everything right for the lovenox.

Last Thursday, I made an appointment with my coumadin gal so she could tell the doctor about my procedure and request the doctor's order for the lovenox. Later, this week, Michael told me the coumadin nurse practitioner could have ordered the lovenox but he was wrong. Gwendolyn specifically told me she could not do it. I know this because I had another procedure a couple months ago and I had to go through the same rigamarole. And my doc knows the rigamarole. The doc had to write it.

For some reason, Gwendolyn's request never got to my file and we don't know if Gwendolyn's request was ever read by my doctor. My doc is overworked and she has a gagillion details like this coming at her every day.  Michael is a good guy but he tends to disbelieve me if I report something that is not in the file. He seems to have absolute faith that all staff at this clinic always documents everything. There was nothing in the file about my meeting with Gwen, much less Gwen's promised instructions to my doc. Do you think I made up that appointment? How much you want to bet it will get billed? Of course I had that appointment. The notes never made it to Gwen. Now I do see Gwen at a different location. Maybe her records for me are kept at a separate location. I don't know.

But it wore me down to a nub to have Michael disbelieve me. He had been wrong last week when he insisted the pharmacy was supposed to initiate a new testing supplies prescription instead of my doc. And he was wrong when he insisted that my nurse practitioner could write a script for the lovenox. Criminy. If Gwen could have written the script, she would have.

Gwendolyn also fell down. She promised me, last Thursday, that se would call me no matter what. And she did not.

And then there were a couple other drugs, less critical ones, whose automatic refills had been used up.  I put in requests for them over a week ago.  I did everything right at my end. But someone somewhere did not do the refills. So I was without those drugs for several days and the clock ticking.

So yesterday, I was on the phone repeatedly, dealing with several different issues. I could tell that all the staff I interfaced with was feeling like I was being a pain in the neck but I was being impeccably polite. It's just that I had four problems going.

When I walked into the clinic, Michael initially told the receptionist to tell me he wouldn't see me, that nothing had changed since we spoke on the phone. He said this without asking why I was there. I was there because I had gone to the pharmacy, because the nice nurse who phoned in my testing script had called and said my stuff should be okay at the pharmacy but I went to the pharmacy and learned that phone orders will no longer be accepted. And I went to the pharmacy instead of calling because I had already called so many times that staff was not bothering to return my calls. And Michael's attitude, blowing me off because he wrongly assumed that I was there to complain about the same issues.

But I had a brand new issue.

And now all my issues are taken care of. But this was all I did for days this week and days last week.  I am lonely, burned out, sad and a little suicidal. I feel unloved, uncared for.  I can't believe I am saing this but I need a hug. I need to see someone smile at me like they know me and actually like me and say "I care about you Tree".  Like that is going to happen.

But there is always a wonderful human here and there.

After dealing with Michael, getting him to understand each of my separate issues, I stopped at another office that is in the same building as my clinic but is affiliated with another health organization.   I have been referred to this place to see a hematologist.  I just had a ton of blood tests -- the blood gal filled over 20 tubes with my blood. But, weirdly, no one had the blood results. I called and called and called and my clinic said " we never got it". Today Michael said the most current blood work in my file was from November -- that is scary. I get blood tests all the time and have had many since Nov. And last week I had about 20 blood tests.

So I called the blood testing company's customer service office in Sacramento (a big cororate place) and they told me that my blood test results had been faxed to my clinic and the hemtologist at 8:44 a.m. yesterday and they had received a fax'd confirmation that the fax transmission had been completed and received. But the hematologist office said there was no record and maybe I'd have to do the tests over. Which I would do if I had to but, geez, I did not imagine those tubes.   The blood technologist had joked that she had never filled so many tubes in one setting before. I like her. She is one of the something wonderfuls. She is very sweet, always cheerful. She works alone in a tiny outpost of a blood draw place, no coworkers. But she is always cheerful, polite, courteous and I feel touched by her caring. I could not do that job, drawing blood all day, having no relationships with people other than hello, can I see your paper work, now I am going to stick you, open your hand, good job.

So anyway. Just cause I was in the clinic building for the third time this week and just cause I was magically hoping I would not have to go back tomorrow, I stopped into the hematology place -- which is mainly billed as cancer treatment -- that's a little scary. But I am happy to report that the very large waiting room where people with cancer go for chem and radiation is a very, very pleasant room. This building is an old, dreary hospital.  My clinic is in old hospital patient rooms turned into exam rooms with no style, just equipment but someone spent money on a good architect and good design to create a pleasant place for cancer patients to wait. I am happy about that. Aren't ou?

And the gal at the hematologist who helped me was extremely gracious.  She picked up right away on my tension (because I said I had been calling all week and people at her place had promised me daily to call me back but, so far, no one had, so she picked up on my stress). It wasn't her job to hep me but the gal whose job it is to help me had not come into work yet so this gal dug around until she found out what I needed to know.  My lab tests had been found. My hematologist will review them tomorrow and someone will call me to schedule a meeting.

I wouldn't mind finding out I have a terminal illness with a short prognosis. I would decline treatment and let myself die. But I don't have a terminal illness.  No such luck.

I can't begin to imagine how hard this shit is for someone who is really sick. I'm not really sick and I am burned out. Stop the world and let me off.

But thank you goddess for the nice humans who were nice to me yesterday and today. Sometimes, if I remember to think this way, people whine before me as more dazzling than a Van Gogh starry night. is life worth living just to see people shine like that?  Hmmm.  It sure felt good to feel some folks eing extremely good to me.