Health Update Month

Most of November, at least weekly, I'm being checked, drained, infused, walked, PFT'd and otherwise followed up on treatment for RA mostly to see whether what's been done is working. So far, so good.

This series of tests, evaluations, infusions, medications and visits with the doctor(s) should wind up by December 1, and the results so far indicate that I may -- stress 'may' -- be going into "remission with medication". In other words I will have to continue taking pretty high doses of immunosuppressants but that most symptoms of RA will be in abeyance for the duration.

The surprise yesterday was with my consulting pulmonologist and the tests leading up to seeing her.  She wanted a six minute walk and a pulmonary function test to compare with previous tests I'd had in April and July of this year. I did the walk with very little strain at all. The only real issue was high-ish blood pressure, but the technician said it was actually "not that bad."

I dreaded the PFT (pulmonary function test). I call it "torture." I'm sure it's nothing compared to what the various targeted prisoners in our various foreign and domestic gulags face on a daily basis, not even close, but it's definitely uncomfortable for someone with pre-existing breathing difficulty.

So there I am in The Booth of Doom chatting with the technician who says she's been doing this for 40 years and yadda and yadda, and she starts the tests, and... gee, it seems much easier on my end. So we chat some more and she points out that the test equipment as well as the Booth itself are somewhat different between hospitals. Yesterday I was at UNM Main Hospital in Albuquerque whereas the other tests were done at Presbyterian's Kaseman Hospital.

We go through the rest of the series of breathing tests and I tell her this time it seemed to go much easier for me. She prints out the results that I'm to hand-carry to the consulting physician, and as it happens, I have the previous results with me so I compared and contrasted over lunch. No, I don't know how to read the print out medically, but I could compare numbers line by line, and it was surprising to see that some of the lowest numbers in the past were now significantly higher.

When I saw the doctor that afternoon, she said that as far as she could tell, my results were mostly either within normal range or nearly so. Which was a great improvement over previous tests. The only worrisome number was lung capacity which is still low -- but not as low -- and she said that was due to scarring that had already taken place from RA, scarring that couldn't be reversed. However, it wasn't getting worse, and there was a slight improvement in capacity over time, which she said was due to medication preventing further progress of the lung damage.

I told her I no longer use Albuterol inhaler, don't use Spiriva, don't use oxygen, and haven't done pulmonary rehab. She said the improvement is therefore due to the effectiveness of the medications I'm taking  and that it may be possible to reduce the high doses I've been on slowly over time, but that I will have to be monitored fairly often to make sure there's no relapse.

Finally, she asked if I'd been diagnosed with COPD. I said yes, before the RA diagnosis. She said, "If you have COPD, it's very mild. In fact, you may not have it at all."

Oh. My.

I told her I felt like the treatments since May have been nothing short of miraculous.

I have another Rituxan infusion (the 4th) next week, then to the eye doctor and my primary rheumatologist the following week. Whew.

We'll see.

Meanwhile, busy-busy-busy with more and more daily activities including boosting Ms Ché's performing and academic career. Here she is with a couple of other indigenous women performing "Stop! In the name of Love" at the  Indigenous Liberal Studies talent show the other day.

Stop! In the name of Love

Yes, I know, the lighting is bad, it's fuzzy as heck, and they're all wearing one dress. Of course. But oh my such hooting and hollering from the audience. Fun!

And before you wonder how 'indigenous' the choice of music was, all three performers are indigenous women, and therefore the performance is by definition indigenous. At this particular art school, the question gets raised periodically -- "What is Indigenous Art?" The answer was provided long by former instructor Fritz Scholder

Rough Times 2

I've been going through a difficult period with my rheumatoid arthritis. I told my cousin in California that so many people have it so much worse than I do (including her older sister) and it's not for me to complain (much) about the state I've been in lately.

Primary problem are the "flares" -- episodes of joint inflammation and pain that come on suddenly and aren't controlled by medications. My regular medications have little or no effect on flares, but until these latest episodes, I haven't had flares for more than a year. What's triggered it this time is unknown. I have my theories, but they're more speculation than anything else. I have not been prescribed any pain medication which is interesting. I've temporarily and sporadically self-medicated with left over prescription pain killers from previous episodes of sciatica, and they work sort of. Sometimes.

The doctor wants to put me on infusion treatment with rituxan which is apparently primarily used as a cancer medication. I don't have cancer (knock wood) but my rheumatologist is concerned enough about the return of flares -- and their persistence -- that she thinks it's time for something more heavy-duty.

I'm agreeable enough, although it will be very expensive all in all (I'll still be taking my regular meds, and I'll fall into the Medicare  Part D "doughnut hole" shortly which will mean out of pocket medication expenses of $700 or more per month. We can perhaps barely afford it. But many other expenses will have to be put on hold. I know any number of people are paying much more than that out of pocket for their medications. Thankfully, Ms. Ché has no out of pocket expenses for her meds, including insulin, the price of which has skyrocketed like so many other life-saving medications.

Ms Ché and I went to Los Alamos yesterday, and when we came back I was in so much pain I could barely walk. The pain persisted overnight, but it shifted from my lower extremities to my right shoulder after I took a pain pill. There it stayed till morning when I took another pain pill and the pain moderated somewhat -- at least enough for me to use my right arm (carefully.)

The doctor says the rituxan could make my rheumatoid arthritis condition go into remission, and that's why she wants to try it as she doesn't want me to keep going through these flare episodes.

My sister had lupus (a condition related to rheumatoid arthritis) for the last 20 years of her life, and from what I've learned -- including from my doctor last week -- the pain can be much worse and much more difficult to control than what I've been going through. Yes, I know she was sometimes in excruciating pain for which she got no relief most of the time. She just had to wait for it to pass. I didn't understand the condition she had at all, but now I think I do. Or at least I understand it better. My sympathy for her is stronger to say the least.

So we carry on. What else can you do?

Yes, onward!

Note on What Condition My Condition Is In

Well, I don't rightly know. Still trying to find out. At least there's no sign of multiple myeloma which is what I was at the doctor for the other day. It's being monitored because of a blood abnormality due to rheumatoid arthritis and the medications I'm taking for it. But there is no sign that either one is leading to the development of multiple myeloma, so that's good.

My rheumatologist has been trying to get me in to see a pulmonary specialist at UNM to see if there is something that can be done about my pulmonary issues -- which seem to be worsening. This is the real danger of rheumatoid arthritis if it affects the lungs as in my case. Untreated, it causes interstitial lung disease, pulmonary fibrosis, which eventually but inevitably makes it impossible to breath and you die.

I am being treated, but I'm not sure the treatment is all that effective any more, and the doctor is concerned enough to want me to see someone who is specially trained to deal with what she says is a rare enough pulmonary condition that she has no expertise in treating it.

Well, that gets us into the medical insurance bureaucracy big time. I have HMO Medicare Advantage coverage, and I'm finding out just how limited it is. I cannot have treatment outside The Network without advance approval from On High. Getting that has literally taken months of back and forth between my doctor and On High. It's almost unbelieveable what has been going on. I got approval -- however.

When I tried to get an appointment at UNM, the first available they had was in June, which my rheumatologist says is too long a wait, and I would agree as I feel worse and worse practically every day.

So she's trying to get it moved up. But who knows?

Part of the issue has been the HMO pulmonologist -- who I've seen and who has been essentially useless. He says treat the RA and the pulmonary problems will be mitigated. The rheumatologist says, no, there are specific immunosuppressant treatments for interstitial lung disease caused by RA that are not generally used to treat RA itself, and she needs a competent pulmonologist to guide those treatments.

So.

We'll see.

OT: Oxygen!

This is more a record-keeping post than anything else.

I took Ms Ché up to Santa Fe yesterday morning. She'd been up all night completing an assignment for one of her creative writing classes, an illustrated children's book that dealt with important issues or struggles a child might face. Her story dealt with facing and coping with loss. I thought it was sweet and naive (in a good way, it's for children after all) and compelling. But it took her all night to complete it, and I didn't want her to drive up to Santa Fe on her own. So, I got myself ready, and we headed out.

It's a lovely and peaceful drive from our place on a rarely used two-lane blacktop north through the Estancia Valley and the Galisteo Basin. 50 miles or so to the IAIA campus. Takes about an hour.

There's no snow to speak of yet, though morning temperatures have been in the teens lately. So yes, it's cold but still very nice out and the roads are safe enough. The problem Ms Ché and I recognized right off was that she's driven the road so many times that it's all but automatic for her. The road is straight and true for the first 20 miles or so, and then it swoops and dives and twists every which of a way. If one is alert, it is easy enough to negotiate but since she'd had no sleep, she said she could easily have fallen asleep while driving the road she knew so well, and that could have deadly consequences. We passed by the wreck that killed a Longmire crewman a couple of years ago on a swoopy curvy part of that same road. He'd been up all night crewing and was headed home around 4 am. It isn't certain, but it is believed that he fell asleep, ran off the road, rolled his pickup and was killed. A pair of horseshoe cross descansos on the fence of the Bar-S Ranch marks the spot where he died.

This was my first trip to Santa Fe since I got oxygen. I thought I would be fine and didn't take any with me, since the last time I'd been in Santa Fe, maybe three weeks ago, I didn't experience severe breathing difficulties. But as we started heading uphill yesterday, bam... I thought I wasn't going to make it.

Santa Fe, at 7000 ft, is about 1000 feet higher in elevation than our home. When I was a smoker, I loathed going to Santa Fe because I felt I was suffocating. After I stopped smoking 20 years ago, I no longer had that problem in Santa Fe, and I could even go up to Taos from time to time and enjoy myself.

But yesterday.... oh man. I started feeling distress as we passed Jeffrey Epstein's Zorro Ranch (yes, that Jeffrey Epstein). The Zorro Ranch marks the boundary between the Estancia Valley and the Galisteo Basin, and one goes over a ridge to get from one to the other. The ridge is probably a couple of hundred feet higher than the Valley floor.

I started feeling modest and then more and more severe  chest pain, the same kind of pain that got me in to see a cardiologist. My breathing became more and more difficult, and by the time we got to the village of Galisteo, I thought for a moment I was going to pass out.

Whoa.

The rest of the way to Santa Fe, about 20 miles or so, I was in considerable distress and chest pain, and I was having a harder and harder time concentrating on the road. I was worried I would run off the road and crash. But we made it to the campus without incident. I credit that in part to the fact that I've driven the road so many times it's almost automatic, and I wasn't falling asleep. I was in distress, but the automatic pilot was still operating.

After dropping Ms Ché off, I turned around and drove back home, still on automatic pilot, and I was paying attention to whatever was going on with my breathing difficulty. The pain and distress started easing by the time I reached Galisteo, and it was almost entirely gone by the time I passed Zorro Ranch headed south.

By the time I got back home and hooked myself up to an oxygen tank, I almost felt fine.

Later, when I went back to Santa Fe to pick up Ms Ché, I took the tank with me and breathed in oxygen the whole route. No distress at all.

It was an unintended experiment. I learned that the chest pain that had triggered a cardiac alert was due to my breathing difficulty caused primarily by rheumatoid arthritis lung disease. (There  are minor COPD and emphysema components). Altitude is an exacerbating factor and I am very sensitive to even minor increases in altitude, say from 6,200 to 6,500 feet.

Without supplemental oxygen, higher altitudes are now close to impossible for me. And this is a much worse situation than I've faced before. This tells me that the lung disease is not controlled and more and more of my lungs are scarred by fibrosis.

I see the pulmonologist Tuesday. We'll see what he says.

Illness and Dealing With The System (UPDATED)

I have a Medicare Advantage Plan through Presbyterian Health Care in Albuquerque. Until yesterday, it seemed to be fine. I got care by competent professionals when I needed it, and though the clinic is 35-40 miles away, it's not too inconvenient. Co-pays -- so far -- have been reasonable.

As I've mentioned previously, I'm currently being treated for rheumatoid arthritis and pneumonia. Rheumatoid arthritis can be very painful and debilitating, whereas pneumonia can be lethal, especially for an elder like myownself.

Treatment for RA has consisted of diclofenac twice a day and high-dose prednisone for five days, with a follow up by a rheumatology specialist. That follow up has not happened. I was supposed to receive a call from Rheumatology setting up an appointment, but none came. The prednisone treatment ended April 18, and for the next week or so, the pain I'd previously experienced was more or less controlled. But yesterday, actually the day before, the pain started returning, and it became so bad I could barely stand it. It was at times worse than before I started treatment.

I had been given a five day course of antibiotic treatment for pneumonia, half the time-period of previous treatments. It seemed to control the symptoms, but then not. At all. It did not seem to me that Azithromycin was an effective treatment as I still had a severe cough, chest pain and compression, and difficulty breathing.

So I contacted my primary care physician reporting that I was experiencing returned or persistent symptoms of both RA and pneumonia and requesting advice.

The response I got was... odd. "Were you able to set up an appointment with the Rheumatologist?"

The answer, of course, is No. I replied that I had never received a call from Rheumatology and I had no contact info.

Shortly, I received a text telling me that Rheumatology had called me and left a message for me to call them back to set up an appointment. Apparently I hadn't received the message for some reason. Contact information was provided and I was encouraged to give them a call to set up an appointment.

This I did promptly.

Hm. I spoke to a very nice person who said that in essence there are are no appointments available until November at the earliest. The doctor who I was told to contact is not accepting new patients at all, and the only rheumatologist on staff who is accepting new patients won't have an appointment opening before November. I explained that I'd been informed by my primary care physician that someone had tried to contact me to set up an appointment with the doctor who isn't taking new patients but that I had not gotten the message. "Let me check," she said. A few minutes later, she said there was no record of anyone from rheumatology trying to contact me and no record of an attempt to set an appointment time. Interesting.

I asked if it was possible that someone had tried to contact me but called the wrong number (I get calls periodically from doctors offices and dentists for other people, sometimes because the caller has misdialed) and she that they only have the one number for me, and there is no record of anyone from rheumatology trying to contact me at any time.

I explained that the nurse told me there was, so it was something of a mystery. She said she would look into what happened and get back to me, because it certainly seemed odd to her, too.

I then texted the nurse who had told me that someone had tried to reach me from rheumatology with the information that they have no record of it, and I had checked through my voicemail messages for the last month, and there was no message from rheumatology.

Meanwhile, the pain was becoming excruciating while we've tried to get this resolved. As it happens I have a few prednisone tablets from the first prescription when I was told I was taking them wrong, and I took one last night -- because in a pinch, one tablet will control the pain for about 24 hours. Doctor told me not to take it that way, but I have no other pain relief option when the RA pain comes on the way it has, and as the issue with rheumatology follow up seems to be a mess for the time being, as they try to sort out what happened with my non-appointment, I used what was at hand.

We'll see what happens. At least the pain was controlled overnight, and that is a major relief.

Meanwhile, I still have pneumonia symptoms which I've reported and asked for advice on, but so far, there's been no response to that request. At all.

The system apparently isn't set up to answer two questions in one message or to respond to more than one issue at a time.

I'm learning, I guess. But if I didn't have the prednisone, I would be in serious agony with no relief at all, and the persistence of pneumonia symptoms after treatment ought to be something of a red flag -- but apparently it isn't.

UPDATE: Despite systemic resistance, I was able to set up two appointments to deal with immediate issues. The first, yesterday, followed up on pneumonia symptoms. Turned out my condition was worse -- gee, ya think? -- and I needed and was prescribed a stronger antibiotic along with more prednisone in case the chest pain becomes severe.

The next appointment is Monday for the rheumatioid arthritis. Since there apparently is no rheumatologist who is accepting patients within a reasonable time frame (at least none that I know of), it will be up to me and my primary care physician to find an appropriate treatment for as long as it takes to get in to see a specialist -- which apparently is going to be months.

Prednisone does work. Even, it would appear, in low dose, which I've tried since getting prednisone for chest pain yesterday.

My co-pay for the stronger antibiotic is quite high (close to $100). It may be that the earlier ineffective treatment -- which had a very low co-pay ($4.00 or something like that) was intended to keep my costs reasonable. I don't know. But it didn't work, and at first, the staff at the clinic ignored my repeated requests for relief. Then something happened, perhaps when I called up again yesterday morning, and things changed.

The system may be resistant but apparently it's not entirely non-responsive.

RA -- So what is this thing anyway?

It's morning on the third of April, and I've been up for a couple of hours now. I woke up in pain, mostly hands, wrists and shoulders, but overall I was very stiff and could not move easily. It had been just about 12 hours since I took anti-inflammatory medication which is supposed to control the pain, though sometimes it doesn't. I thought this morning might be a bad one.

I managed to get through the first part of my morning routine  slowly and carefully, adapting my motions to whatever triggered more pain, and then I had to sit still for a while. I took more anti-inflammatory medication, right on schedule, and that helped lower the amount and duration of pain, but it took 20 minutes or so to begin to be effective.

Then it was time for a cup of coffee, reheating some from last night. I could barely hold the cup. Barely pour the coffee. This after waiting for the anti-inflammatory medication to work --  which it was doing though I was still stiff, still in pain.

Gradually, the stiffness dissipated and the pain lessened sufficiently for me to start typing.

This is pretty much my routine every morning. The mornings are the worst.

They say that the anti-bodies are released in quantity -- and attack the joints, muscles and organs -- while one is sleeping, and that is the reason why mornings can be so difficult for people with rheumatoid arthritis and similar auto-immune conditions.

It can take hours, sometimes all day, to get past the initial problems of just getting up in the morning.

The medication I take is partially effective in controlling the pain and inflammation. I rate it on a percentage basis, 10%-70%. Its effectiveness varies throughout the day and night. Sometimes relief is almost complete, other times it seems like the medication isn't working at all. I am never entirely free of pain. One wrong move, and I get a sharp reminder in my finger, wrist, arm, shoulder that I have a condition and must adapt my movements to that condition, or pay a heavy price in pain for moving the wrong way or too far in the right way.

That means every action has to be thought through in advance.

And I'm learning how many things I can't do anymore or can only do with great difficulty. Opening a can, lifting a 5 gallon water bottle, putting on a long-sleeve shirt, tying shoes, brushing teeth... the list goes on.

Learning, yes. Appreciating what I still can do, too.

I look out the window, and the sky is still blue, the birds still sing, and my heart can and does still soar with joy.