What is good...

I got fired by my GP.  Instead of telling me herself, having an honest conversation, she had a third party tell me. She said she understood zebras and just two appointments ago said she was excited to be getting somewhere (the Sjogren's diagnosis).  One month later, said she could no longer treat me, that I needed more help than she could give. I was very hurt in how I learned about it.  Very hurt.

My last appointment was not a good one, as I have written before.  But it was one in 15 of them.  And the appointment itself was not problematic (no tears or anything), it was the lack of an asthma plan after the fourth time of asking that was my achilles heel that day.  Well, in retrospect, I am highly suspicious that I was in the throes of a hormone surge like I used to have, which worries me deeply that this new hormone is not as effective as the last.  

After she walked out of the room, I realized part of how I had not been effective in communicating.  I had said that, in Alexandria, I had an agreement with my GP not to nebulize more than twice without going to the ER.  That's what I said.  I meant more than twice during an acute asthma attack without going to the ER.  My GP made a face at those words and rattled on about how to use an emergency inhaler and nebulizer and said something about nebulizing every four hours.  I knew I was not communicating, but I didn't understand the problem.  After she left, I realized she didn't understand I meant during an acute asthma attack.  That day, now a month ago, my BP was 236/111 after nubulizing and that scared me because I haven't seen it that high and the pulse pressure (the difference between the diastolic and systolic numbers) was also the widest its been.  Wide pulse pressure brings on the danger of stroke.  I wanted someone to know how bad it was and tell me if it was still safe to nebulize twice in a row by myself now that dysautonomia makes my heart rate and blood pressure skyrocket so whilst using my emergency asthma meds.

So, walking out, I asked the floater nurse (someone I've never met) if I could speak to either the check-in nurse or the main nurse because I forgot something.  She said she'd check.  Whilst still walking toward the waiting room, she came back and said they were busy.  I asked if I could wait.  She said that I could.  I sat down in the waiting room with my back toward everyone because I had tears streaming down my face.  Three times, she came to tell me that they were still busy.  Three times I said that that was okay and I was okay waiting.  Then, still waiting, I finally left.

When I learned that I had lost my GP, I was so hurt and so overwhelmed.  I was drowning.  And I reached out to my sister.  We ended up talking for hours and I told about what had happened the week before at my appointment, even the cutting in the parking lot afterwards.  What followed still amazes me.  I feel as if I had a big sister for the first time, for she gave me three gifts:

1)  She explained that I had been dumped.  I've never dated, so I don't know that feeling. But she explained that I had a relationship with my GP (and her nurses, especially the one who emailed me lots), the way that folk can have a relationship with their hairdresser or mechanic, and that I was dumped.  That that was the hurt I was feeling.  She said it was crappy and chicken to have a third party tell me, like we were back in junior high and she sent someone over to give me the news.  Or a break-up email.  Or, these days, a text.  What I was feeling was normal.  That really, really helped me to get out from beneath the crushing weight of the hurt.  I still hurt, but I could breathe again.

2)  My sister explained how the nurses and staff might have viewed my presence in the waiting room.  She painted it as some sort of TV show so that I could hear her words without being hurt further.  She explained that they were probably confused and worried why I wouldn't leave when I was being asked to leave.  She explained that the temp nurse was doing a rather poor job of communicating and that every time she told me that the nurses were busy, she was telling me that they would not be available to talk and I should leave.  She just didn't use her words ... sort of like the GP didn't!  My sister painted this picture of the staff huddled around some microwave popcorn, half fascinated and half freaked out why I was camped out in the waiting room.  Suddenly, I could see how my staying there could have been disturbing to the staff.  But, my sister pointed out, all the nurse had to do was ask me what I wanted the doctor to know and I would have told her and felt like I had been heard and would have left much less upset.  So, my sister, who is—as my entire family is—quick to point out what is wrong with me or what I have done wrong, was very clear that I was not wrong and that my wanting to clarify (much less wanting an asthma plan) what I had meant about nebulizing twice in a row was not wrong, that it was important information.

3)  What I struggle with the most is a poor ability to recognize what I am feeling.  My sister and I have not talked about this and yet she gave me a most precious gift:  she explained what I was feeling, what was bothering me.  She said that I was feeling like I was being managed, as if I was a problem that needed to be solved or managed like a child who couldn't help herself instead of being engaged in my own medical care, especially since there was a meeting about the change in GP and no one thought to include me!  Not even the social worker!!  When I talked with the integrative medicine specialist the following Monday, after having those words all weekend long, I was able to use them to tell her how I was feeling about what happened (not being dumped).  I learned then that my GP had already called her and another meeting had taken place!! I tamped down my anger over hearing that and repeated how I felt.  She heard me and even apologized.  She agreed that I deserved the respect of a direct conversation with my GP and she didn't realize that in an effort to help those team members had tromped all over my need to be engaged.  

I could write an entire book on just how precious and timely and profound those gifts are to me.  The integrative medicine specialist said that she would ask others in my care team not to talk to me that week so that I could focus on, first, the asthma specialist appointment and, second, the ophthalmologist visit about my vision.  

Well, the asthma appointment was rather horrible because the doctor was rather agitated and angry and, at one point, even said that she wasn't even sure I had asthma or if it wasn't just my anxiety.  I was appalled at how she was speaking to me (her anger and her loud voice) and how she kept violently waving me off each time I tried to address what she was saying.  I was equally appalled at my response:  Shut up. Be still.  Wait until it was over.  I did leave with an asthma treatment plan and a calmer doctor.  She sent me a follow-up message the following day that was distressing, but I quelled my upsettedness, responded simply and succinctly, and tried to put the whole visit (save for my asthma treatment plan) out of my mind.

The ophthalmology appointment was four and a half hours and absolutely draining.  She mapped my eyes and pointed out the damage from MS.  Even though I used drops right before I came, my corneas dried out so much that she couldn't do the final tests.  She put drops in, but I needed the gel goop that I use ... my Big Gun eye stuff.  She started me on Restasis (a wildly expensive drug) that is covered at Tier 3 but the copays for that and the new asthma drug are $90 together and the insurance cost will be barreling me to the donut hole and the terrible out-of-pocket costs that I'll have to pay for all my prescriptions.  Restasis takes two to three months to know if it is going to be helpful, so I am to increase the three drops I am using (two gel and one extra strength) every two hours, rotating through them every two hours.  It was a difficult appointment and I was exhausted.

When Monday rolled around again, I was waiting for the community health team to contact me and worrying about how many more of my doctors would be affected by the note my now ex-GP put in my chart.  But I also I kept thinking and thinking and thinking about that third gift from my sister.  Suddenly, something washed over me, and I thought, "Why are you waiting on people who haven't shown any thought for you or included you?"  I opened up my laptop, logged on to my Medicare Advantage plan website, and looked for doctors who are in my plan and who are accepting new patients.  

After spending eons perusing options, first in the family practice section and then over in the internal medicine (where I thought I might find a better fit), I narrowed it down to two options, an OD (the kind of doctor that was recommended) and an internist.  

Part of what bothered me is that when I was told that I was being fired, I was told I was being transferred to this OD who is in a clinic rather far from me.  No one asked me what I wanted or needed.  I am not sure I'd even like an OD, especially since they take a hands on approach.  I know I did not want a doctor more than twice as far as I was currently driving in an area of town I have never visited in a time when I am increasingly dependent on GPS even in familiar areas.

After running the two options by my integrative medicine doctor, I chose a doctor near the ER that I would use if need be, near my new eye doctor, and near another places I will be having appointments.  I thought that would help me learn that area.  I chose someone who had 27 5-star reviews.  And I choose someone from Texas (I'm from there) since living in the midwest sometimes leaves me feeling like a fish out of water.

My first appointment (which I got in just two weeks) went well, although I am working hard to manage my expectations. I explained that I not interested in seeing a pain management specialist or a physical therapist (both referrals are languishing in my chart) because the other specialists are more important to me and I can only afford to see three a month. I also explained that I am worried about my specialist appointments in the fall because switching to the new asthma drug (because my control was not good on the single drug inhaler) AND the new diagnosis of Sjogrens and the need for Restasis meant I was now going to be in the donut hole come August. I needed someone to understand the reality of needing to pick and choose what medical expenses are the most doable and would get me the most mileage.

Well, she promptly asked me about Medicaid (my disability is too high for that) and Medicare additional assistance (my disability is too high for that). Then she asked about manufacturer programs. I told her that I am in ones for Celebrex and my emergency inhaler.  And I told her that Advair does have one, but you have to spend $600 out of pocket first. And the $320 insurance cost each month meant I was now barreling toward that donut hole. So, this WONDERFUL new GP gave me a list of three other comparable asthma drugs and said that if the medication assistance specialist found a manufacturer program that was better, she would switch me to that drug. It turns out Dulera does not have the spending restrictions that Advair, Breo, and Symbicort do. So, my application for free inhalers went in this week.

Then, because I am in agony over my dry eyes despite using three different drops (two of them gel based) and knowing the Restasis can be a few months in helping, the GP suggested I try fish oil. Only she said it need to be a specific kind. So, she pulled up Amazon.com on her computer and showed me how to look for Fish oil that was High EPA and then to make sure that the EPA and the DHA totals were close to the overall micrograms of the fish oil (less "other" stuff in it).

Even with a good Medicare Advantage plan, the co-pays start adding up when you are seeing 8 specialists and doing lots of tests/labs/procedures as well as taking now 39 prescriptions, prescribed OTC medications, and prescribed supplements.  My old GP seemed to take it personally that I wasn't interested in a pain management specialist, especially since we were still in the process of titrating up on gapabentin and had just started baclofen. I want to let those drugs have a chance to work. And I would rather endure the pain of Trigeminal Neuralgia than to try a surgical intervention or botox injections. It was like I was rejecting her somehow.

I still do not understand that.

I realized, though, through all of this, that I want doctors who engage me in my medical care instead of just trying to manage me like I am a problem to be solved. Chronic illness is not a solvable problem. It is a continual process of addressing what comes up, knowing that what worked before might no longer do so or what did not work before might be worth trying in a different way.

The point I am trying to make here is that I wouldn't have sought the change unless it was forced upon me. I was deeply hurt by how the firing went down, but already I have a GP who understands the need to save every penny possible when it comes to medical expenses and literally said to me: "I can see you are doing the best that you can right now. That is all anyone can ask of you."  How can that not be a good start with a new doctor?

Because of this, I have been deeply pondering on what good means.  To me, nothing is more clear than Isaiah 55:8:  "For My thoughts are not your thoughts, Nor are your ways My ways," declares the LORD.  And if you extrapolate that out, what God means by "good," is not what we mean by "good."  At least not always.  I do think that the meaning of "good" is changing for me and something that I appreciate more and more.

Even with the hurt that came with what has happened and the problem of that note in my chart (as evidence by the asthma specialist's ire during my appointment with her, the third time I've seen her), I can only conclude that what has happened is something good in my life.  It is financial good.  It is medical good.  It is emotional understanding good.  It is empowerment good.  And it is sister-relationship good.