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

Falling Apart -- The Saga Continues

"What a drag it is getting old..."

Welp, they hauled me off to the ER early Thursday morning, as I had reached the point of immobility and excruciating pain thanks to what I recognized was a sciatica episode, and Ms. Ché and I agreed there was nothing for it but to get checked out and treated in the nearest emergency room.

After calling my Senior Plan's 24 hour advice nurse -- she was a sweetheart, too -- and getting her recommendation that I "be seen" pronto (call 911 you old codger, it could be worse than just sciatica which is bad enough!) I called 911 and shortly four burly EMTs showed up, two from the local fire department and two from the local ambulance provider. We discussed how best to get me to the gurney since they couldn't get the gurney inside.

I said I would try walking but I would definitely need help. Sure enough, fifteen or twenty minutes later, I made it to the gurney, an EMT in front and one behind, the others riding shotgun. The pain was just incredible, but I made it.

The drive into town takes 40 minutes at a good clip, and it seemed like the ambulance driver was booking, so we may have made it in thirty or so. At any rate, the first vitals check after they hoisted my bulk into the ambulance was pretty scary. My BP was high, much higher than it has been anytime recently (in fact I'm not sure I recall my blood pressure being that high), and the EMT said that it was often the case that people in pain show high blood pressure.

Just before we got to the ER, he checked again, and it was closer to my norm, though still high compared to my usual.

I felt like I was being loaded into a warehouse at the ER. There was nobody around except for the woman who buzzed us in, but we seemed to pass by an endless number of empty cubicles on our winding way to wherever. Finally got to cubicle #13 and there I was deposited.

Service was pretty quick and efficient if largely impersonal and soon enough I was seen by a Nurse Practioner, apparently the only ER quasi-physician on duty. My experience with NPs in the past has been very positive.

Anyway, we went through my symptoms and signs again (third time, I think, since calling for the ambulance). The NP determined that it was indeed sciatica (without additional complications) and offered several different injection options to try to control the pain. I chose cortisone injection because that's what I'd had before and it seemed to work remarkably well and quickly too.

Interesting that this time it seemed to work almost instantaneously in reducing the pain level from a 9 or 10 to a 4 or 5. The next issue was to see if I could now walk on my own. This proved a challenge, to say the least, but I made it to the rest room and back to my cubicle (peeing on the way) so that seemed a good sign.

But the pain was coming back. So the NP gave me another injection, which seemed to work as before, but by the time they got the paperwork ready for my discharge, I felt just about the way I did when they brought me in. Hm.

It seemed like the cortisone was wearing off very quickly.

Another check of the vitals, and I was free to go.

Go where? This was the most bizarre part of the whole episode. Having been discharged from the ER I was now on my own, to find my own way out of this maze of cubicles, and to go wherever I wanted.

Ms. Ché had not arrived yet, and I had no idea how to get out of the place. I stood in the doorway to the cubicle looking miffed and lost. "Free to go where?" I asked the disinterested nurses at the counter. "Home or wherever you want," one of them said. I said "I don't know how to get out of here." One of them pointed to a corridor that he said led to the exit, all I had to do was turn left and continue down the hallway. OK.

So I start on my shuffling way, in great pain but determined to find my way out. The exit corridor seemed long and intimidating. But I shuffled along, and who do I spy coming through the exit door way down the hallway but Ms. Ché looking thoroughly annoyed that I was attempting to walk on my own when it was obvious that I was barely mobile. Suddenly, the NP appeared and said he would walk me to the waiting room. Ms. Ché then bolted to get the car, which she said she'd parked quite a distance from the ER wait/deposit room. The NP got me to the waiting room, said I could sit until my wife arrived, and wished me well. I had already told him I was pissed at being told I was free to go without the slightest instruction of how to get out of the ER, and staff seemed to be uninterested in providing such information without a special request. I told him it was "weird." Well, yes.

He said he'd look into it, but I doubt he did.

Meanwhile I sat down, omg -- the pain, and waited for Ms Ché to arrive. It seemed to take a long time; she must have parked very far away. But once she arrived, the struggle to get me to the car ensued, starting with getting me up from the chair. Omg. Again. Well, I finally got up, but all that one foot after another business to shuffle me out the door was proving near-impossible. A security guard poked her head out the ER door and said, "Would he like a wheelchair? I see you're having some real difficulty." Both Ms Ché and I said, "Yah," and she brought one over and got me into it without too much trouble and wheeled me to the car. The load-in wasn't as painful as I thought it would be, and we thanked the guard profusely for her help. As is the case around here, about all she said was "No Problem," as she cheerily wished us well.

We drove home into the sunrise and as I was sitting in the passenger seat, the pain was solid but not intolerable. I didn't realize I was seizing up, however.

We discovered that when we got home. At first I could not figure any way to get out o the car.  But after a number of false starts, I managed to bull my way into an upright position. OK. Now what? I couldn't walk, even after Ms. Ché brought  me my cane. I was stuck. What to do?

After the last episode of sciatica, I bought a "seat-cane" that I took with me to Trinity Site just in case I wasn't able to walk the site unassisted. It proved a god-send, really. So Ms. Ché found it and dusted it off and brought it to me to use along with my usual shillelagh-cane. Would you look at that? As long as I had enough support on both sides, ta da, I could make it into the house and eventually back to bed.

I'd been given a prescription for muscle relaxant at the ER, but there was no way I could pick it up myself. I called the pharmacy and asked if they had received the prescription. They said, "No." I asked if my wife could bring the hard copy in and pick up the medication. They said "Sure, no problem." Sure enough, within another half hour or so, she came back with 20 tablets of cyclobenzaprine, whatever that is, and I took one as directed, and almost immediately fell asleep -- as did Ms. Ché who'd been up fretting terribly since my first expression of "extreme pain." We both slept for several hours, and when I woke up, I was still very stiff and sore, but the pain had diminished considerably. Yay.

Another muscle relaxant, back to sleep. This time when I woke up several hours later, I thought I could actually get out of bed without assistance and shuffle to the bathroom to pee. I managed to do it, though there was still a lot of low grade pain, but I found I couldn't get back in bed without assistance as my left leg was still pretty numb and I couldn't lift it onto the bed. Ms Ché helped, and it was back to sleep for both of us.

Several hours later, I took another muscle relaxant tablet, and after a few minutes fell asleep again.

When I woke up about 8am Friday, it felt like the pain was almost gone. I could get up and walk albeit slowly and carefully. I could sit down in a chair. I could use the bathroom. I was still stiff and sore as heck, but it didn't hurt nearly as much. Double plus Yay.

Ms. Ché was delighted if a bit wary. She planned to go to school today -- she missed classes on Thursday -- but she was worried sick that if she left me alone, I'd be in distress. I said, "No, I feel OK and I can walk. You go ahead. I'll be OK."

I've spent the day in  a kind of dream world, able to get around, but lacking energy and seeming to float. The pain has almost disappeared which is great.

I had to cancel two appointments, one with my primary care provider on Thursday. Couldn't make it, sorry. Another with the infusion center where I was supposed to start Rituxan infusion Monday. Couldn't imagine sitting seven hours while they do their thing.

But all in all, this has turned out to be one of the worst bad and quickest resolved sciatica episodes I can remember. The last time, I didn't get treated at all because it seemed mild and I knew it would pass in a few days or a week. It did, but not without reminding me how frail I was.

This time, it seems to have passed in two days. Amazing, though I wouldn't want to push my luck.

And next time? Who knows.

OT:: The Diagnosis

The coming diagnosis, let's put it that way. My various physicians have me on a kind of diagnostic treadmill, checking off one thing after another ("Nope, not that!") and going on to the next. It took months, for example, to confirm I had rheumatoid arthritis and to come up with a treatment routine that seems to be working pretty consistently for joint pain and swelling.

They've checked me for cancer (multiple myeloma) -- so far no sign. Yay.

Now the question is what's wrong with my lung(s). Breathing problems and fatigue have been getting worse. I can feel the pressure of a "growth" in my lower right chest (this may be in the lung or it may be due to a hiatial hernia, more about which in a bit), and at times I can barely be active at all -- say walk for more than a few dozen yards, or even stand upright for more than a few minutes -- without becoming exhausted.

Hm. So what's going on? The pulmonary function test showed that everything was more or less normal, except... I had severely reduced lung capacity. I think it topped out at 38%. The pulmonologist declared confidently, "Welp, that because you have pulmonary fibrosis due to RA; your rheumatologist should treat it aggressively steroids." He added that I have emphysema, too, from smoking -- which I knew from years ago -- but that it was not severe (I think he called it "mild") and it was not a significant factor in my breathing problems.

My rheumatologist did not entirely agree. She thinks emphysema could be a bigger factor than the pulmonologist believes, and if that's so, it wouldn't be wise to treat me as if pulmonary fibrosis is the leading cause of my difficulty. She also said that if I had extensive pulmonary fibrosis due to RA, she would be obliged to treat that very differently than the treatment I've been receiving for joint pain and swelling. She didn't say how she would treat it differently, but only said she wanted me to go to the National Jewish Health in Denver for a thorough respiratory assessment and diagnosis.

I've been in contact with  them and they are working out appointment availability and which department to assign me to and so forth, but truth is, I'd rather not go -- not in the middle of winter anyway. There has been no snow so far; the weather hasn't even been particularly cold here in central New Mexico, or up in Denver. But that could -- probably will -- change. They were talking about a February appt but said they'd try to get me in sooner because I'm out of state. We'll see.

Meanwhile, I had a follow up CT scan last week. The results were posted Tuesday. I'm still digesting the findings. A lot of it is written in clinical jargon some of which I don't understand, but the upshot I gather is that the radiologist who thought the signs were ambiguous in May now thinks the signs are quite clear that I have pulmonary fibrosis in my right lung, that it has spread from the lower right lobe to the mid lobe, and that it is probably though not absolutely certainly due to RA. There is some mild to moderate emphysema particularly in the upper left lobe (which is essentially the same diagnosis I received in May and what I was told when I had a scan in 2010 due to one of my periodic bouts with pneumonia.)

So I do a little research with the Goggle and discover that pulmonary fibrosis is indeed one of the possible complications of RA, that it is irreversible, and as it spreads it becomes fatal. There is no treatment, at least none that can control or reverse the progress of the disease. The only things Medical Science can do are palliative. Oxygen, for example. Or a lung transplant. Which, due to my auto-immune condition (RA), would probably not be indicated.

Alrighty then.

I'm not in a tailspin about it, and I probably won't be. When I told Ms Ché what this situation was looking like, she was momentarily stunned, and then took the tack, as she always does, that this is just another challenge sent our way, and we'll get through it. No matter what. Bless her heart.

As far as I'm concerned, que sera sera. I'm not in any particular pain, thanks to the medications I've been taking for RA. While I'm conscious that there is something happening in my chest, it doesn't hurt at all, it's merely uncomfortable sometimes when I lie down. Fatigue is a real problem and is getting worse, but I have means to cope with that. (I'm old, I take naps. OK? ;-)

So in a lot of ways I feel extremely lucky, even if I don't have much longer before shuffling off this mortal coil. According to what I've seen in my research, unconfirmed by my physicians at this point, the prognosis is that I have perhaps months, perhaps years before the fibrosis makes it impossible for me to take in oxygen from my lungs -- and I die.

Hm.

We all gotta go sometime, and in my view, passing from this plane is a part of the circle of life. It's one stage on a journey, and for all we know, it's not the last stage.

So. As things clarify, I may have somewhat more to say about The Journey.

In the meantime, be good to yourself and one another.

OT: Sicky?

Well, I don't know. I am being scheduled for a whole raft of tests in the upcoming weeks and months, because my rheumatologist and pulmonologist disagree on what's wrong and how to treat whatever it is.

There is no doubt I have rheumatoid arthritis; joint pain and swelling are being treated with a combination of drugs: leflunomide, plaquinil, and prednisone. So far, the combination has worked well on my joints, so I have few complaints about that treatment. (It is expensive, but I'll get to the cost issue later or perhaps another time.)

The problem that isn't being treated directly is pulmonary. Ie: I have severely reduced lung capacity, and that leads to all sorts of other problems including chronic fatigue -- which is getting worse -- chest pain, tingling and numbness in my extremities, and so on.

According to the pulmonolgist, this is due to pulmonary fibrosis caused by RA. He says "treat it aggressively with steroids." My rheumatologist is dubious and says that from her perspective, she's not convinced that RA is the cause of my lung issues; she thinks it may be emphysema instead, as her read of the CT scan I had six months ago is that I have severe emphysema whereas the pulmonolgist says it's mild (which was the diagnosis when I had a CT scan five or six years ago as well.)

The rheumatologist also said that if it is RA-caused pulmonary fibrosis, she would treat it very differently than she treats my joint pain, and she doesn't want to start a course of treatment for fibrosis if that's not what I have. So she wants me to go to Denver for advanced tests at National Jewish Health, the leading respiratory hospital in the country. Let them determine what's really wrong, right?

As for steroid use, I've received so many warnings of dire side effects, I hesitate to add more to my current low-dose prednisone treatment (7.5mg per day) for joint pain. But the pulmonologist says that "aggressive treatment with steroids" is what I need for diminished lung capacity.

OK, what to do?

Meanwhile, the CT scan I had six months ago showed a mass in my lower right lung. This was thought by my primary care physician to be a consequence of pneumonia I was then recovering from, but the radiologist thought it might be a fibrous mass due to RA. He couldn't determine from the scan which it was, but he said it was  dubious about a pneumonia diagnosis from the scan. In the meantime, I have actually felt the mass recently, whatever it is, growing and pressing on my chest wall, causing discomfort and occasional pain. In passing, there has been some doubt I had pneumonia due to ambiguous symptoms and failure to respond to mild antibiotic treatment early on.

My rheumatologist says it could be cancer. Oh, thanks! I doubt that, but still. When physicians disagree, and suspect the worst, it's better to find out. I guess.

So, another CT scan is scheduled next week and tests in Denver are pending.

I'm frustrated to say the least. But this is how these things go.

FTR, I stopped smoking almost 20 years ago. If emphysema has worsened, it's not due to continuing use of tobacco. Since all these symptoms have multiplied, I suspect it may have something to do with altitude, as I moved from sea level in Sacramento to 6,300 ft in New Mexico's East Mountains in 2012. It may have to do with that and breathing dust, and perhaps other environmental triggers. I don't know. Of course, Old Age enters into it, too.

The saga continues.

[Ms Ché and I went to Santa Fe last night to see Jonathan Richman at Meow Wolf (George RR Martin's artist venture in a repurposed bowling alley we almost couldn't find). We saw him (aka JoJo) several times in St. Louis and California decades ago when he was still a pup. He's grizzled and old now -- like the rest of us -- but he still makes the kind of music he always has, and the crowd (which was mostly 20s and 30s age, plus their children, not geezers like us) ate it up. Yay! However, myself, I had problems standing through the whole concert (no seats for the wicked), and I was worried I wouldn't be able to walk afterwards. Luckily, I found a post to lean against and was able to jigger my leg enough to keep the circulation going, and ultimately made my way back to the car under my own power. Yay, again! I said to Ms. Ché that it was "quite a pick-me-up." She eagerly agreed. Fun.]

Old and Ill...

I got doctored yesterday for the umpteenth time. Part of an ongoing assessment of my condition(s) of old age and cussedness, as well as Rheumatoid Arthritis (RA), COPD, and potential other complaints.

Finally got a pulmonary function assessment which was ordered months ago by my rheumatologist. Understanding what's going on with my lung(s) is a key to understanding some of the rest of my physical difficulties.

Fatigue has become my most aggravating problem. I simply cannot do what I once could because I become exhausted within a few minutes. We found out part of the reason why yesterday.

The pulmonary function test is no fun, but I'm glad I did it. It showed that I suffer from mild COPD, but also a severe reduction in lung capacity which the pulmonologist determined was due to RA not COPD or emphysema which CT scans determined I had acquired from smoking years ago.

He advises aggressive treatment with steroids for the RA to get a handle on diminished lung capacity.

Oh.

I've been warned repeatedly and insistently about the hazards of steroids, particularly bone loss, diabetes and other side effects, and my rheumatologist has been reducing my dosage of prednisone while providing me with other medications that seem to work pretty well at controlling RA joint pain and swelling. Now I'm being told to use a steroid inhaler -- albuterol (which I have but have never used) -- due to diminished lung capacity.... well, what to do, eh?

It's one of those conundrums which I guess I'll just have to face.

Note: generally speaking, I feel pretty good. The problem I have not been able to resolve is fatigue, and figuring out what to do about that is going to take a bit of resourcefulness.

Then there was the brochure on COPD I picked up yesterday that was all about hospice care, ventilators, end of life decisions and whatnot. My oh my. Well, I'm not quite there yet.

Getting Doctored

I'm still in the early stages of evaluation by a host of specialists trying to get a handle on my condition(s). This will probably go on for at least another 6 months or so, possibly indefinitely, because there is no cure for what ails me, and keeping watch is the best they can do.

I've been getting lots of xrays and blood and urine tests to keep tabs on what is going on. A new test or follow up essentially every week for the time being. Certain markers show up regularly that indicate this or that condition, but nothing is severe enough to warrant alarm. Yesterday, the oncologist, for example, declared me non-cancerous for now, based on those tests which show the presence of a condition to be monitored (MGUS) but nothing else.

Major problem is rheumatoid arthritis and its effects which seem to be spreading and are only marginally under control. This is proving to be a challenge to say the least. I take prednisone which usually controls the pain and inflammation, but sometimes doesn't. I also take leflunomide, which doesn't seem to do anything. Previously, I was taking sulfozine, which also didn't seem to do anything. The rheumatologist is trying various medications, starting with the least expensive, to see what works. We haven't quite hit on anything except prednisone, which supposedly is dangerous over the long term even at the low dose I've been taking (10-15mg daily).

In addition to joint inflammation and pain, I experience extraordinary levels of fatigue regularly. RA is also suspected to be causing or worsening lung inflammation which contributes to fatigue in a vicious cycle, round and round.

Then there's COPD which is diagnosed independently of RA for which I need to see a pulmonologist. Next time for that is October when more tests are scheduled to see just how bad it is.

I was looking through some notes I kept as this journey continues, and it seems that I was doing better in May than I am now. I'd say there's been a slow-but-steady deterioration since then. The pain is mostly controlled, my range of motion is relatively good, but my overall ability is declining. Day-long activity is simply not possible any more. 20 minutes at a time is about the most I can manage and then I must rest for at least as long.  Naps are essential. I limp from sciatica from years ago but it's been getting worse. I get out of breath with almost any activity of more than a few minutes. Though I've tried not to, I've been gaining weight again -- a side effect of prednisone they say. That just makes things more difficult.

And so it goes. At one point I asked one of the doctors, don't remember which one, "What's going on? Why is this happening?" The answer: "You're getting old, and what's happening is more the consequence of old age and genetics than anything else. Compared to a lot of people, though, you're doing well. Just keep that in mind."

I do. Of course I have friends who say if I hadn't had such a wild youth, more'n likely I wouldn't be having all these issues in my dotage. It all comes from my bad living when time was. Then there are the others who are convinced it's all karma, results of things I did or didn't do in previous lives together with my own actions in this one...

Genetics (a form of karmic debt I suppose) enter into it, especially with regard to RA, because my sister had lupus, which is a related auto-immune condition. I assume the propensity came from our mother, though as far as I know, she didn't suffer from auto-immune conditions herself. She had thyroid issues and mental health issues, however, which may or may not have been related. She died of emphysema after a lifetime of smoking. She never quit.

I quit smoking 20 years ago, but I've been diagnosed with "mild" emphysema along with COPD, so I haven't escaped that consequence of smoking tobacco.

Both my sister and brother died of pulmonary embolism, both at a relatively young age: my brother at 32, my sister at 59. I'm not sure of exactly the cause of my brother's embolism, but the indications I got from his care givers and his death certificate are that he lapsed into a coma an was taken to the hospital where he died a few days later. The clot was probably due to his inactivity/paralysis.

On the other hand, my sister's embolism followed knee surgery that in turn followed injury in a prison/mental hospital where she worked. She died as a consequence of the injury and surgery. No doubt about it.

As for cancer... my father developed melanoma which he refused to have treated, and he died within a year, age 67. My mother's mother died of what I was told was stomach cancer, age 52. Her mother died at age 76 from uterine cancer. I've recently learned that from her death certificate. Previously, I didn't know what had happened to her, and from accounts by my sister, who claimed to have met her great grandmother when she was about 7 or 8 years old, I had always thought that Ida (my mother's grandmother) had died after 1940. Turned out, though, she died in 1935, and so my sister could not have met her as my sister was born in 1933 and wouldn't have remembered her if she did meet Ida -- which I strongly doubt. I wonder who she met who she thought was Ida...

My mother's father died in a railroad incident when he was 38; he didn't have time to develop killer diseases and conditions, I guess. As his mother died in 1918, I suspect it was from the Spanish flu. His father died in 1921, and it may have been from the same cause, though I don't know.

So those are some of the histories I'm dealing with. As I've noted before, a lot of my relatives died at a relatively young age, and right now, I'm older than most of them when they died -- wild youth or no.

This actually gives me pause. If I have lived longer, perhaps there is a reason.

On the other hand, I never thought I'd live past 30. So every year since then has been kind of a bonus, no?

Quien sabe...

Survival Notes... As It Were

Sometimes I feel like I'm in a strange stringy soup of one health crisis after another. It's a bizarre feeling, especially when I've got friends who insist that if I hadn't drank and smoked and whored around when I was young and believed myself to be invulnerable, I wouldn't be in this condition now.

Well, may-be, but I'm not convinced. It is something that certain preacher-men like to retail to their impressionable flocks, though -- as they drink and smoke and whore around the way they do.

I'm not in as bad shape now as I was a week or so ago, so there's that. I had a CT scan -- without the iodine dye which I'm deathly allergic to -- last Tuesday, and the extensive report came back very quickly:

There are two masses in my right lung that look like "chronic inflammation" and evidence of "moderate emphysema" in both lungs. I knew about the emphysema from a CT scan five years ago when I was suspected of having TB -- because of my pneumonia symptoms and because the flow chart showed I'd been to Mexico (except I hadn't, I'd been to New Mexico). It apparently hasn't gotten worse. Yay. I haven't smoked in almost 20 years, so at least I haven't been adding more tobacco smoke to my lungs. In fact, I can't stand to be around tobacco smoke any more.

I'm somewhat puzzled and intrigued by those "masses" however, It's possible they've been there all those years, too. But as I researched the chronic inflammation aspect, it turned out that that is actually a potential consequence of rheumatoid arthritis and/or other autoimmune conditions, as is indeed pneumonia. Oh.

So it's quite possible that the double whammy -- RA and pneumonia -- that I went through for the past couple of months was all of a piece, not separate illnesses that just happened to strike at the same time. And it's likely I will continue to be vulnerable...

OK. Getting used to this.

Or at least learning. Interestingly, my PCP suggested that the interim treatment for RA (prednisone) was contributing to the persistence of pneumonia as prednisone acts as an immunosuppressant. Interesting because a routine treatment for lung inflammation due to autoimmune conditions is... prednisone.

I guess finding the balance is the issue.

I asked for and received a prescription for "low-dose" prednisone, and it seems to be working out reasonably well. I no longer have pneumonia symptoms (yay!) and whatever pulmonary inflammation there is seems to be under control. The doctor prescribed inhalers -- which are complex to use, whoa -- for breathing difficulties, and now, in addition to follow up with a rheumatologist, I'll be seeing a pulmonolgist, too.

So. Moving right along...

But I loathe being ill.

Bleah...

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.

Ché the Pneumoniac

Yes, I have pneumonia again. Third time. I wanted not to think it was true, but symptoms were too similar to previous episodes, and I was not getting better. So, got doctored for "persistent cough" and sure enough, pneumonia.

This is  annoying as all heck because I've had both pneumonia vaccines. What in tarnation is the point if I get pneumonia anyway? And where did it come from this time?

It's a mystery, but this is my suspicion: When I went to the doctor for RA symptoms, I got a flu shot because I didn't get one last fall. The nurse who administered the injection had a severe cough. A few days later I developed flu-like symptoms, but I attributed them at the time to side effects from the RA medication I was taking.

After I finished the high dose course of RA medication, I figured the flu-mimic symptoms would go away. They didn't. It became more and more obvious that I had somehow acquired pneumonia again.

How? My suspicion is that I had flu after the flu shot -- either from the nurse or from the vaccine itself. I had no treatment for flu, of course, because it didn't really register with me that that's what I had. The flu led directly to a pulmonary infection that became the pneumonia I'm being treated for now.

If it is viral pneumonia, the antibiotics are not going to work, but so far they seem to be working, so we'll see what happens over the longer term.

For the record, RA symptoms have been largely under control since the five-day high-dosage prednisone treatment -- which ended on 4/18. Not a cure, no. But at least it's less debilitating.

What a drag it is getting old...

RA update

Not really. We're still in the early stages of figuring out what to do about this apparently permanent and debilitating condition. My primary care physician is assigning me to a rheumatologist for treatment. Interim care essentially is limited to prescription anti-inflammatory medications which come with some fairly alarming potential side effects -- increased risk of heart attack and stroke among other things -- and at least at times, they don't much work anyway.

At least there's this: so far actual joint damage is minimal, and treatment will aim to keep it that way. There's no cure, any more than there's a cure for Ms Ché's diabetes, but maintenance over the long term and prevention of further damage become the primary objectives.

Meanwhile, one learns to live with it.

RA

I'm coming to grips with an impending diagnosis of early stage rheumatoid arthritis as soon as my doctor gets around to coordinating and evaluating the avalanche of test results that have come in this week.

It's hard to state coherently how much pain I've been in for the last several months, but it has periodically been severe and debilitating. Joint pain. It began with two episodes of general joint pain -- involving practically every joint -- last summer, pain which did not respond to pain relievers -- aspirin and naproxen -- that I had been taking. My doctor recommended that I try ibuprofen, which I did, and sure enough, it seemed to help. On recommendation by a relative, I tried turmeric curcumin which also seemed to help.

After the second episode of general joint pain, the problem became one of a pattern of periodic joint pain that would center in one set of joints after another. Ibuprofen continued to control the pain until mid January of this year when the inflammation and pain seemed to concentrate in my hands and wrists and the pain was nearly constant no matter how much ibuprofen I took. I was up to as much as 2400 mg per day, and still would wake up in the middle of the night needing more.

I'd stiffen up during the night so much it would take hours for me to unstiffen enough in the mornings to even brush my teeth.

Finally the pain became so bad and so constant that I tried an old left-over prescription of Tylenol and codeine that I'd gotten years ago for back spasms. I hated taking it then, and I didn't want to now, but something had to be done. It controlled the pain long enough for me to get some sleep, so that was good. The side effects were still unpleasant, though, and I didn't want to rely on it for pain control.

So it was time to see the doctor again. After hearing what I had to say about what had been going on, the doctor ordered a raft of blood tests, x-rays, and suggested this was probably an auto-immune issue, not osteoarthritis that is caused by degeneration of joints.

She also prescribed an anti-inflammatory drug diclofenac -- which I'd never heard of -- which she said I must not take with ibuprofen. In fact she said over 800 mg a day was ineffective anyway. Oh, well. I beg to differ, but that's another issue for another day.

The anti-inflammatory helped right away. I'd s say the pain in my hands and wrists was 60% controlled almost immediately, and by the second day of taking it, the pain was almost gone for most of the day, though there was still a good deal of stiffness and swelling.

Then the test  results started coming in. At first they were ambiguous, suggestive of an auto-immune issue, but not clearly pinpointing it.

Then results came in that confirmed a  diagnosis of rheumatoid arthritis with an possible other autoimmune component on top of mild osteoarthritis.

Understanding what it is is taking me a while. My sister had lupus for the last 20 years of her life, and I really never knew what it was. She was periodically in intense pain, but she seemed to be getting along reasonably well at other times. Medication helped, and after the first few episodes, the pain seemed to diminish though it kept coming back.

My doctor tested for lupus, and that's the other autoimmune component that appears to be confirmed.

I'm noticing that the anti-inflammatory's effectiveness appears to be diminishing. From 60% control, it's down to about 40% and overnight stiffness and pain seems to be returning in force.

I'm not the world's best patient, so this is going to be an interesting time.

I'll try not to be too self-pitying!