I suppose some of you have wondered if I have either perished or simply dropped off the earth. It seems to be some of both, and I admit to being rather down tonight. The past 15 months since I wrote last have proven quite difficult: I am taking my fourth different formulation of immunoglobulin, one of which brought with it two very serious cases of Aseptic Meningitis Syndrome (AMS); our insurance situation abruptly changed, so that well we do still have insurance – and I suppose it is fairly good insurance – the costs of it for some of the things I end up experiencing all too often have climbed more than 1000% (such as extensive in-patient hospitalizations); I have not yet finished my dissertation, as there are days and sometimes even weeks when I feel to unwell to even rise for meals; roughly a month ago I was placed on home health services, switched to subcutaneous immunoglobulin infusions, and put on notice that these four walls will become very close and too familiar (my last IgG numbers tanked and I promptly caught my fourth case of pneumonia in 27 months); and, in the meantime, I have been diagnosed with two additional digestive tract illnesses that will require surgery as soon as possible, but which cannot be considered until I have more strength – hence twice-weekly physical therapy as I am able. It’s a lot to deal with.
I will try to take this all in the order in which I listed it.
Mid-November 2013, I received my usual IV dose of Privigen. That Friday I came down with intractable migraine – or so I thought. As a lifelong – and now daily – migraineuse, I simply assumed this was yet par for the course. However, by the next evening, I simply could not see, I could not think, I could not bend my neck or turn my head, I could not touch my toes, I could barely remember the previous several days. Light made me scream despite the pain it caused. Clearly something was radically wrong. My husband realized how different this was from anything else I have ever experienced in our marriage and he rushed me to the emergency room. Without hesitation, I was whisked back to a room, hooked up to monitors, set up with an IV, and had a large amount of blood drawn. A chest x-ray and head CT soon followed, as did a urine sample. I do not know how much time passed in a blessedly dark and quiet – negative-pressure isolation rooms assist with more than communicable disease containment – but my husband stated that very quickly after I returned from CT, the physician returned and stated that he was nearly certain that I had either meningitis or encephalitis, and that he recommended an emergency lumbar puncture. I think I remember telling my husband this was the right course but I cannot remember for certain; I do remember he signed paperwork and I was glad despite the pain I knew was coming; someplace in the back of my head either diagnosis made sense. Again, time made no sense, but it seemed as though it was also a very short time between the lumbar puncture (which I do not remember hurting, possibly because everything else hurt so desperately) and the diagnosis of meningitis. They believed it was viral, though I did have a bacterial load. However the bacterial count was not high enough to consider bacterial meningitis – thank goodness, because we really had waited too long had it been bacterial meningitis. Were that the case I would likely have been dead already.
I was moved to a room on a medical/surgical floor next to the ICU, and given copious IV fluids and pain medication on demand (though I believe my husband said that during the first 24 hours I was given pain medication on a four hour schedule – I do not remember). A few days later I was released from the hospital, but we returned almost immediately because the headache became suddenly much worse and I could not tolerate any changes in position or even going to the restroom. Any change of pressure or movement affecting my head hurt, perhaps even worse than the original meningitis. Rush return to the ER.
This time I remember being extremely combative and refusing to cooperate with nurses and physicians. My spouse (let us just call him S from now on – that is so much easier) was able to work with me to allow the nurse to insert the IV line, but he said I was virtually incoherent and very combative with the doctor, refusing to remove the layers and layers of turban-like cloth I had wrapped around my head to shut out light and sound. Eventually, I suppose with a sedative and pain medication on board, he was able to conclude his physical exam, and was certain that this was a continuation of the meningitis, and possibly a leak of cerebrospinal fluid from the lumbar puncture several days prior. I do not think I have ever gone to a room so quickly from the emergency room.
A day and a half later, I was still in unrelieved pain, finding it difficult to communicate and still struggling with combativeness. This was Thanksgiving week in America (I know I have some followers overseas, so this translates to the last full week in November; Thanksgiving Day is that Thursday). S had much of the week off work anyway due to the holiday, and he rarely left my side. Given that what was being prescribed was ineffective for the most part, and narcotics for making me exceptionally nauseous, we wanted to come up with a different treatment possibility. As the anesthesia group felt I was to medically unstable for an attempted blood patch, the covering doctor that weekend (I think the weekend actually begin on Friday due to the holiday) came up with a unique solution: she prescribed massive doses of IV Tylenol for a 24 hour period, a wide open IV line with nutrients and very dilute Phenergan as I was so nauseous it was difficult to cope (I have great difficulty finding nausea relief, and Zofran is simply ineffective), and absolutely flat on my back bed rest, including a Foley catheter – still with the option for narcotic relief, which I refused. Evidently, IV Tylenol works by a different mechanism than oral Tylenol, and while it can take a little longer for relief, it does seem that this is an excellent alternative to narcotic regimes in certain situations. But, I still fought with irritability and anger which we worked with medically, though crying jags constantly occurred despite the pain they caused. This was one of the worst things I have ever gone through in my life. I kept insisting on being released against medical advice, but the physician and S soothed me enough to make it through each additional day. I knew I was being played, but I also knew S would not let me go home if he could help it.
By the end of the weekend I was weak but at least medically stable. I was released home and for the most part slept for two weeks. My intention had been to complete the rough draft for my dissertation no later than the end of November – and I was well on my way before I became ill – but, well recovering I found that I was unable to think clearly in my short-term memory had been affected. My immunologist and I decided mutually to attempt the Privigen one more time, and four weeks to the day from my previous infusion, I received another IV dose. Unfortunately, history repeated itself. And this time, it was Christmas week. Such luck! I was finally released, feeling very ragged, and more than a little defeated, right around New Year’s Eve.
We chose to switch medications at that point; obviously the Privigen and and my metabolic system were not getting along. We made the decision to go with IV Gamunex-C, and after a week of exhaustion I began to feel much better than I have felt in decades. By the end of the month however, I felt as though I had been hit by a tank; it was as though the medication had simply run out on me. Another two months of IV trials, and we decided as I hinted above, to go with the subcutaneous version. The very low IgG count, obviously, had a great deal to to with that. That was four weeks ago.
The past four weeks have also been a bit of a blur. I am exhausted all of the time, and find it difficult to take interest in much of anything due to the exhaustion. What had been, in December and January, “simply” short-term memory loss and difficulty reading had become good memory, but no reading, no writing, just a constant fog of exhaustion. I assume I am adjusting to the medication – at the moment, for my sanity, I feel that is what I must assume. I will be going in this week for my first blood work since starting the subcutaneous version and will know early the following week – or perhaps by the end of next week – where my IgG levels reside at this time. I suspect they are lower than usual, and this downward trend (and it has been a trend for several months) remains quite scary to me. My IgG has not once gotten above 853, and while that I suppose that is more to celebrate than the low of 164, everything below 700 feels like a loss – a big loss. I DID have one exceptional days this week, though. Thursday, I felt almost well. But I must have lifted one too many plates, or typed one character too many, or sat up for one minute too long, or moved one muscle too many in physical therapy, because since then, everything has reverted to that backward-sliding, zero-sum game I seem to be playing.
While I sit here in the bathtub dictating this – yes, dictating – I am so very grateful for Dragon Dictation – my cat purrs, and my body relaxes. It seems that bathtubs and cats remain among my few joys right now. The sun aggravates me, not because it is sunny, for I enjoy that, but because it is springtime, and I am a gardener who cannot garden and cannot tolerate sunlight due to medication.
Amongst all of this are the never ending medical bills, increased insurance premiums, a deductible – which is something, actually, we have never had, increased co-pays, and what seem like constantly increased costs of living. Meanwhile, I have been told it is improbable to impossible that I will ever return to teach in the classroom again – a talent and joy I never expected nor knew I had until a decade ago. I feel as though the rug has been pulled out from under my feet. I cannot even imagine a time when I will be able to have stamina or the reliability to teach online for a full semester again; I have not once managed to be well enough even six weeks in a row to be reliable even on a day-to-day basis. This well and truly sucks.
Or, to be far more specific, this well and truly sucks impossibly big boulders through a very narrow and bendy straw.
There have been far more illnesses and far more difficulties then I can possibly relate in this space at this time. For one, it just seems too overwhelming, and second, how am I to ever keep this all straight? I have all of the medical records, I have all of the notes, I have all of the blood test results, I have all the data. But for all of that, I cannot tell you the toll it has taken. I am glad for the extra year I have been given somehow – I was told so many times I would not live, and certainly not to my birthday last year – but, I do wonder if there will ever be a time when I can look back and say I have truly lived. It seems as though that ended so many years ago.
I smile and I effuse and I express positivity, and on that basis so many have taken me less than seriously. I know no other way to cope in real life. If I do not try – if I do not at least look like I am trying – life seems even less inviting. Perhaps it is good, then, that you cannot see my face, that you cannot be led astray by a smile and straight teeth. Perhaps it is well that I can write.
Because, perhaps that is all I can do.