The Killer in the Crowd

♪

“Who is the betrayer, who’s the killer in the crowd?
The one who creeps in corridors and doesn’t make a sound.” ♫

All right. Something I never considered the IVIG would do (and luckily so, or else I might not have went forward with it!) was that it would so very obviously do the one thing I’ve avoided doing at all costs for the past two years: Wake up my immune system. Because that would re-activate the bartonella like it has every time in the past since I contracted this parasitic-bacteria.

And that’s exactly what it did. Continue reading

My tonsil got me potentially-life-altering IVIG therapy.

And here’s how.

Intravenous immunoglobulin (or IVIG) is a blood product made from thousands of donors to produce just a single dose, and used in the treatment of immunodeficiency and immune-mediated neurological disease, amongst other serious things.

I guess the story starts several months ago, when I began contemplating seeing my immunologist again to have my immune function retested. Not that long after, I began getting spots on my tonsils which, after having some lymph node pain in my neck and ear pain, I figured was the result of an ear infection trying to push its way through; the tonsils are lymph nodes, after all.

After my ear improved with tea tree oil drops for three days, the tonsil spots proceeded to go away…and then come back worse. There I was thinking my immune system had won against something, but no! Accompanying this, my neck and face felt like they were on fire, and I had stabbing lymph node pain from my face to my right arm all day. It seemed to irritate the previous nerve damage in my face. (And mind you, I’m already on ibuprofen and percocet daily–the pain was going through them.) I wondered if I had gotten some type of stubborn virus, began to worry, and decided I needed to make an appointment because I couldn’t handle this one on my own anymore. And getting that appointment went something like this:

Mentally pair my current problem with having wanted to get my immune system checked, anyway. Decide that’s perfect, I can do two in one; have a great feeling about that. Call to make an appointment and find out my usual immunologist left, so made appointment with new woman in the office. Suddenly start to feel uneasy that I made that decision while distracted by two people in my car. Call back to inquire about which immunologist in that office likes complicated cases. Receptionist says she doesn’t know, but the one I just made an appointment with was available more (in town more often), so that might be something I could consider; I say okay and hang up. Still feel uneasy and nagging intuition that I should call back AGAIN and take the cancellation they offered for The Other doctor, even though it was two days later than the one I’d just made and I was really hurting. Try to find an explanation for this intuition (because I just like to have explanation for things, if I can); begin doing research. Find out the Other Doctor loves complicated cases, AND he has thirty years experience, AND he’s the same doctor I saw twelve years ago at the onset of the M.E. (who helped me even without realizing it by giving me a steroid to slow down the initial inflammation). Immediately called back for a third time that day to take the cancellation–finally feel at ease.

I felt ridiculous calling back so many times to change appointment dates and doctors, but. Intuition over feeling silly for a few seconds. The strange thing was that when I called to change the appointment–which I’d scheduled with the reason of having tonsil trouble and needing to recheck my immune system function–they asked me, “and you’re beginning IVIG?” I said, “…No? No one has ever offered me that!” and she said, “Hmm, that’s weird! Someone wrote down that you were starting it!” Hmmm…

I’d almost canceled my appointment before ever going to see him, because the grapefruit seed extract/olive leaf extract rinse I’d been using had–between making the appointment while in severe pain and the days before the appointment actually arrived–helped my tonsil to the point of there being no spots left. “Luckily” I didn’t. By the time I arrived, he actually said it was fine!

Long story short, my current doctor, the “Other Doctor,” who shall henceforth be referred to as My Immunologist, is wonderful. He doesn’t know fully what M.E. is, but understands that it inflames my brain and causes progressive muscle weakness. He was knowledgable that once you get certain infections there’s a possibility of them going chronic, so we didn’t have to argue over that. And for some reason, in his chart as well, was written that I was there to start IVIG. I told him the same thing, that I’d never even mentioned IVIG to anyone, and no one had ever offered it to me. (If you’re not aware, there’s a certain supply of IVIG and they don’t just give it to anyone.) So, staring at my page-long medical history and at a loss of how to help me, he offered it to me!

So, because of this tonsil and the other dozen quirky things that got me to that appointment at that time with that doctor, I have now gone through the system, gotten approved with the help of test results showing that my immune system is still.. well, my immune system, and both doesn’t have enough of things or produce adequate antibodies, and am starting my first IVIG infusion tomorrow, Monday, October 6th, at 9am at an infusion center. This will do either one of two things: Help me, or affirmatively rule out that this is never going to be one of my options so I can finally lay it to rest. But I’m obviously banking on it helping! And if I feel safe enough, they can even come do the infusions in my home!! Which, by the way? Is a method of infusion that my insurance had only begun approving three days before that appointment.

Of course, my tonsil has done what it’s been doing for literally months now and the spots have returned and even popped up on both sides of my mouth. We’ve at least ruled out strep, though. He immediately called me in an appointment to the local office to do a culture with his associate, the lady doctor, upon hearing the spots abruptly came back over the weekend and spread. Neither one of them is sure why this is suddenly happening, but she thinks those and my other lymph node pains have been the result of an overburdened lymphatic system and weakened immune system, because nothing else has changed besides my relapse back in June. Basically my body is probably just overwhelmed. I liken it to a skin infection I get on my neck only when my immune system is overwhelmed. This could lead to tonsil stones if it doesn’t clear up, but he’s hoping the IVIG will help that, too. Frankly, since the severe pain has subsided, I’m content to let it work itself out, now! (With some grapefruit seed extract rinse, to help things along.)

My favourite part about this, besides the actual IVIG, is that I get fluids before and after each all-day infusion because of my chronic dehydration. And I get to do this once a month. Which means I get fluids once a month. I haven’t said anything here, but I’ve returned to needing fluids in the ER every few months. Some friends helped me discover coconut water in June, which has helped a lot–now I just come very close but can usually “save myself”–but it’s still a daily battle. So if the IVIG goes well, I can continue getting monthly fluids as well, and dehydration will be one less thing on my balancing plate. I finally see a new endocrinologist later this month to discuss treatment for what was in 2009 borderline adrenal insufficiency, which should help that even more.

Another thing my bloodwork revealed was a high eosinophil count, which for me means the bartonella and/or mycoplasma are active–no kidding–as that was one of their first presentations. They’re not as high as they were before when things were progressing really quickly, though, so that’s comforting–maybe this IVIG can help subdue them! I’m very eager to see what will happen when I can actually make antibodies!

I’ve joined the Immunodeficiency Foundation, so if you’re on there, look out for me, or let me know your username! My thoughts about primary immunodeficiency usually take the back-burner in comparison to everything else I must balance, but when I think about it, living with it really does add a layer to my life that people with full-functioning immune systems just don’t have to worry about. I’m looking forward to being part of the support community.

 

As of this month, it’s now been two years since the big relapse (before this one) that made me stop all treatment in favor of, um, living… Now I get to try this! I’m thinking surely it will do something, for all of these factors to have led me to this point? I don’t believe in coincidence! I’ve been visited by multiple types of owls in my backyard almost every night since this whole tonsil thing started, despite maybe only hearing a wild owl three times in my entire life before this. Owls are symbolic of intuition, wisdom, the ability to see what others do not, and their presence announces a symbolic death, major life transition and upcoming change. 

Last night the Great Horned Owl visited me again.

a rainbow at night

A Dose of Reality

First off, a huge thank you to those who have expressed their support and gratitude of my recent writing… I was not expecting it. I have read your words and I want to reply as soon as I can. Right now I feel an update of sorts is in order. Forgive me while I use my spoons for expression, but know that I am actively awaiting the right words to respond to the support you have offered in my direction. :) You help me feel less alone, and on weekends like this one, I really need that…

At the beginning of May I wanted a mini-celebration of the fact that I’ve been off treatment six months and I am still walking okay. So what better a way to affirm my functioning feet than with new shoes!

K9 by Rocket Dog® Odetta Floral-Print Ankle-Strap Pumps, $30

K9 by Rocket Dog® Odetta Floral-Print Ankle-Strap Pumps, $30

This event was right before my monthly bug-flare, which still happens around the beginning of the month. I forgot about it this time, so it wasn’t until day three of being in bed that I realized why all these symptoms were happening.

I effectively went from walking “normally” in new shoes and eating at my favourite foodie joint, to being in bed four days, excessively sleeping through over half of it, and having seizure-like activity again.

Yesterday, I felt as if every inch of me was buzzing, vibrating from the inside-out. I tried to wash my face with sunscreen, use toilet paper as moisturizer, pour my milk into a sauce bowl instead of a cup, and made accidental purchases online. I found myself standing in places I didn’t have any memory of walking. Yes, I remember all of these symptoms.

But still it helps to know why it’s happening. Not only that, but I’ve noticed I’m typically worse on weekends, again…an ominous sign from my bartonella days, but a fact nonetheless.

 

My ego said, I would rather all this NOT occur immediately after I finish celebrating how relatively well I’m functioning after six months with no antibiotics! Why did you have to remind me, right now? Maybe I wanted to forget for a little while, just how much my body is going through, just how sick it is…

Another part of me is saddened at the reminder.

The other part of me, is thankful for it, that I don’t float away into denial, and hopes that I won’t also sink into despair…at least not for too long.

See, I go through the same emotions as everyone else. I don’t ever want to seem like I don’t. I don’t ever want to seem like the decisions I’ve made or the way I live is something unattainable.

 

I’ve been relatively doing so-so. I never imagined stopping treatment would have given me so much of these months back, these months that I would have otherwise spent in misery with no real benefit except more worsening. Instead, I have more good days right now, I’m determined to use them fully, and I can be mostly comfortable.

Symptom-wise, this has developed:

  • I consistently see the squiggles, black dots, and smoke-fog illusions in my vision.
  • My hands go numb more often, and various irritated nerves cause intermittent curling of my fingers.
  • There is more numbness in my feet, and more of the old “fire foot” sensation.
  • I have more heart palpitations and trouble staying hydrated.
  • My left leg buckles more frequently.
  • I get more spasms in my back.
  • I get choked more easily.

I recently returned from two ER visits with a random virus…and just like after my last viral attack in December/January, my vasculitis is temporarily on hiatus. So for now I’ve been able to stop the daily ibuprofen which was keeping it in check, which I like, and yet this has resulted in more trigeminal neuralgia episodes and eye pain.

While the shot I had to attempt treating the occipital neuralgia didn’t go as intended–giving me odd side effects like falling backwards and an inability to recognize myself in the mirror, I suspect because of the brain lesion(s?)–it DID interrupt those signals, so it’s not as constant as it once was. There are still so many other types of pain, which was depressing to realize, but that one is better. Being on only half the pain medication that I was on before, this has unmasked many of the neuropathy symptoms I didn’t know were developing.

My favourite bit of news is that, I found out if I cover myself in sunscreen before being exposed to sunlight, the vasculitis doesn’t flare up. :) And as of my most recent echocardiogram, my heart function hasn’t worsened, so they don’t want to see me for another 18 months!

 

I’ve noticed I try to leave you all with something that’s helped me, recently. This time I offer you something for your friends and loved ones, and possibly as justification for your feelings, as well: The book, How to Be a Friend to a Friend Who’s Sick by Letty Cottin Pogrebin. It was mentioned on Facebook by the lovely Toni Bernhard, whose book How To Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers changed my life a couple of years back. Both of these are also available on Kindle and Audible, so pick your best function!

a rainbow at night

 

Asthma, reflections on having PANDAS, and mycoplasma.

First off, I have to say I was shocked at the response I got on my last blog entry. I halfway expected people to yell at me for saying it, but I’m glad everyone connected with it so much!

As for me, I had no idea it’d already been two weeks since I last posted. I have been more social than ever (online), and also more fatigued than ever. Because of this (and my arms, of course) I’ve had to choose my activities wisely, and pick one main thing to do per day.

 

The most important thing to report this time is that my random cough continued to be persistent and began to worsen, so I saw my primary physician who says I now have asthma. (Well, asthmatic bronchitis–two in one, aren’t I lucky!) If I were to assume this to be infection and/or herxing related, I would say this:

Since I’m fighting Mycoplasma pneumoniae, a bacterium that usually causes pneumonia (but also loves to attack your nervous system), my best guess is that treating this beast has caused a lot of die-off in my lungs, where it’s most likely been hiding out, at least partially. And said die-off may be causing the inflammation that’s triggering this asthmatic response… I mean, it can’t be any coincidence that as soon as I start trying to kill the pathogen that has caused lung problems for me in the past, I get inflammation in my lungs, right?

If that’s not it, then I have genetics to thank. But I’m going to go with “will hopefully go away as I treat Mycoplasma” until it proves itself otherwise. At least I’m not having any trouble breathing. I just have this cough, which, after three days on Dulera (which is literally just my Nasonex in an inhalable form…mixed with formoterol), I’m much, much better. :)

 

Also, I’m convinced I had PANDAS as a child. It stands for “pediatric autoimmune illness associated with streptococci,” and is basically what it sounds like: An autoimmune response to a streptococcal infection that causes damage to the brain, primarily resulting in obsessive-compulsive disorder and tic-disorders. In the “My Story” section I ponder over whether or not something triggered my childhood disorders of OCD and Tourette’s Syndrome, whether it could have been a brush with tick-borne infection, or something similar. But this makes too much sense…

  • My immunodeficiency making me extremely susceptible to infections (especially Strep),
  • a history of autoimmune responses to things (like vaccinations),
  • the fact that my OCD and Tourette’s were acute-onset…

With that lovely combination of factors, I was practically a walking target to get M.E. in the future, wasn’t I? :\

People with a history of PANDAS are supposed to stay on prophylactic antibiotics until age 21… Why? To prevent additional episodes of this infection-triggered disorder that could lead to further brain damage. Now I wonder, if my doctors had known about that… If I had been on prophylactic antibiotics until age 21, and that had prevented the two years of slaughter my immune system went through, contracting every infection that passed my way after I got that Hepatitis B inoculation, if the bug that triggered my M.E. would have still triggered it, or maybe I wouldn’t have gotten it… It doesn’t quite matter, at this point. But. It’s interesting. Like another piece of my puzzle…

 

On that note, I have to state the obvious, that Mycoplasma and Strep are very similar in this respect: They usually cause upper respiratory infection, but in the immunocompromised, they can wreak havoc everywhere, especially the nervous system. You know what happened to me when I got both Bartonella and Mycoplasma a month apart from each other in 2008? My Tourette’s syndrome and stuttering flared up so bad I could barely talk to people; I also got extremely paranoid, showing clear neuropsychiatric involvement. Additionally, that’s when my movement disorder began worsening. I had the beginning signs of the dystonia since getting Lyme disease (even though I didn’t know I’d gotten Lyme, yet), but after those two infections, things progressed very quickly. (The Tourette’s and stuttering eventually died back down, though they love to pop up at random, especially when I’m under stress.)

Treating Bartonella helped it A LOT…a lot a lot. But the thing is, the antibiotics that treat Bartonella are the same antibiotics that treat Mycoplasma (or at least the ones I was on, except for Bactrim), so I have no idea of knowing which infection is responsible for it. It’s not gone yet (as evidenced by my oromandibular dystonia showing itself more lately), but the worst parts of it stopped progressing after a year on Rifampin (with other antibiotics). That would suggest to me that the Mycoplasma may have been the trigger, while Bartonella aggravated it because it agitates the nervous system so very much.

This is one of the reasons I can’t type up a post explaining my Bartonella experience and treatment: Because even though I can pinpoint a lot of which symptoms were caused by Bartonella–especially the ones that recurred every 5-7 days–I have absolutely no way of knowing exactly which infection caused what, specifically in regards to my dystonia and other related movement disorders. Because I got those infections a month apart from each other, and I treated them both at the same time. I can type about my theories, but I can’t put a bunch of information out there that people are going to read, without being sure. All I have are correlations, and patterns, which I happen to have a talent at spotting.

Two years ago I hypothesized that Mycoplasma (which I easily tested positive for on the first try, unlike the others which I had to coax out with speciality labs) was going to play a much larger role in my health issues than I had at first assumed… I had no idea how right that would be.

If anyone has any experience or information they want to share with me about PANDAS, suspected PANDAS, or similar things triggering OCD and Tourette’s Syndrome, feel free to comment or contact me.

a rainbow at night

Having determination does not always equal curing a disease.

I don’t think some people are prepared to hear that determination alone is not enough to beat a disease. You can do everything right and still get worse, and it’s not your fault. You can’t say being motivated and refusing your circumstances (“I got better because I wouldn’t settle for anything less!”) is going to get everyone well, because it gives those who aren’t so lucky the delusion that they’re somehow responsible.

This post is for you.

The people who stay sick still matter. The people who die from their disease still matter. It is not your fault.

No one talks about these things out of fear of being attacked for it… I guess it’s a lesson to be learned by those who have that journey. As Oscar Wilde said, “Nothing that is worth knowing can be taught.”

a rainbow at night

Guest blogger: “It is healthy to talk about what you are going through.”

I’m here to make another installment to my Life Lessons section, but this time, with the words of a very special guest blogger. And I don’t say very special because they are well-known, famous, or something like that. But they are, in my opinion, one of the most amazing people to exist. My dear friend–who has a birthday today, no less!–who has impacted my life in more ways than I could count, wrote this several days ago, and I thought it was way too important not to share (especially since they agreed to write something for you all sometime this year!).

I’m really tired of “not talking about your illness” equaling “being a stronger person.”  No.  It is healthy to talk about what you are going through. 

Illness is not something to be shoved away and ignored like it is dirty and shameful.  No.  Illness, disability, old age, and dying are a part of life.  It is natural.  It has been with us forever. 

Every single human being that has ever lived has dealt with it in some fashion.  Every single human being has died, or will die.  If they live long enough, those still among us will will watch a loved one die.  They will get older.  They will encounter disability in themselves or others.  They or somebody they love will get sick. 

For me, it would be unhealthy not to talk about something so inevitable and universal. 

I talk about my illness.  I am sure it makes some people uncomfortable and has driven some people away.  But it affects nearly all of my life right now, and I see no reason to pretend like it does not.

— the author of Black Cat Saturdays

 

No one should be made to feel like they have to deny a part of themselves or a crucial part of their life in order to win the affection and/or acceptance of another. As with anything in life, it’s all about balance. We have to find a middle ground between talking about what we are going through, honestly, and yet not being consumed by it. I know people on both extremes–those who never talk about it, and those who talk about absolutely nothing else. It is detrimental either way. The person who never talks about it–perhaps to keep people around, not make others uncomfortable, or stay in denial about their own circumstances–ends up feeling cheated, abandoned, and can lose self-respect. The person who talks about nothing else, forgets who they are entirely, and sees themselves only as “the person with such-and-such disease.”

But we are more than sick, or disabled, or terminally ill. We still exist, and we still have purpose and love to share. But in order to get to that place, we have to realize–and hopefully be accompanied by people who realize this, too–that we are also people who have to grieve in a healthy manner, who have to express ourselves as we go through this part of life, and it’s not our job to make sure everyone else stays comfortable while we do it.

As written above, we will all go through these things at some point. It’s just that we, who are already going through it, simply don’t have the time or extra energy to spend worrying about someone else’s opinion of how much we’re “allowed” to share before they feel inconvenienced…

a rainbow at night & black cat saturdays

I feel the need to share again: “The Silence of the Dying,” by the Sara Douglas.

I have a hive? You’ve got to be kidding me.

How can the mycoplasma pneumonia still be alive?!

…Or at least, that was my first thought when this all-too-familiar hive popped up on my leg, in the same spot it always does when, what I’ve always suspected to be the mycoplasma, flares up.

It usually went something like:

Get hive on leg → Concurrent lung problems and coughing/sometimes pleurisy → ER visit or an otherwise-very-close-call

The hive part usually happens–from observing my own patterns and bloodwork–because of eosinophilia, associated with the mycoplasma infection. Bartonella (and whatever else I got from the fleas) causes it as well (so when I got them BOTH back in 2008, my eosinophils were really high)…but the bart should be gone, right? I didn’t get hives when I got re-infected with bartonella (and again, whatever else I got from those fleas) back in August 2011, so I’m thinking that leads further evidence toward hives being associated with mycoplasma.

You’d think it’d be dead by now after being on Rifampin a year, and Zithro for several simultaneous months with it, but since Mycoplasma is slow-replicating like Lyme disease (roughly replicating every three weeks, from what I’ve been able to find, and experience), I guess it makes sense that it’d take more along the lines of years to fully eradicate, just like Lyme disease. (Antibiotics, specifically the bacteriostatic ones, mainly kill when the bug replicates.)

Additionally, checking my tags, the last time I had a hive was right before I had to stop the Zithro because it stopped working for the bartonella. Right before that happened, I was beginning to get another severe flare-of-“unknown”-origin, with the proverbial-possibly-mycoplasma-hive warning sign before it started…

Then after switching from the Zithro to Bactrim (still with the Rifampin, to finish off the bartonella) I haven’t had a hive since.

Until now, that is. After starting the minocycline. Which also kills mycoplasma. More specifically, which also kills mycoplasma in the same way that Zithro kills mycoplasma. Hmmmmmmm.

So apparently this is a herx? And if I do get the impending very-bad-flare-up, I doubt it’ll result in an ER visit, since I’m not near as sick as I was before.

But still, this is disturbing, and.. I just wish the mycoplasma were dead!!

Time will tell what Mr. Hive has to say about my infectious status. Til then, I’m glad to be on minocycline…

Oh, also, I’m buying a shower chair. Yeah.

a rainbow at night

My Last Pill: An “I have overcome bartonella” post:

In the summer of 2008 I acquired an infection with the bacteria known as “bartonella,” which is transmitted by infected animals, biting flies, ticks, or–in my case–fleas. I would not be exaggerating to say it tried to kill me, infecting my entire body, particularly my heart and nervous system, putting me in a wheelchair, then bedbound, on supplemental oxygen, and very nearly having to be tube fed after being unable to eat.

Today, I finished treating it.

Like cancer, it is prone to relapse, and I don’t know if it will return one day. But in this present moment, I have conquered it. :)

a rainbow at night

Almost finished with bartonella treatment!!

I used to post much more often than this, I know, but… Things are somewhat monotonous! I don’t have to constantly be on top of symptoms every five to seven days to post updates as regularly. Or at least I don’t think I do… Last month, around the 5th, and then the 10th, I had the same symptoms as this month, around the 5th, and then the 10th… I’m not sure what that’s about.

The past few weeks I’ve still been antsy over my random symptoms. Flu-like, fever (99.5 on the 6th–probable Lyme?), severe headaches, neckaches, dizziness, legs going very weak/requiring wheelchair, POTS, poor mental state. All very possible Lyme symptoms! But this is my last chance to make sure there’s no reliable pattern before we stop the bartonella treatment. These are possibly my last few days on Rifampin, after being on it a year! I also don’t think I’d be able to tolerate a maintenance dose of my Bactrim (i.e., two single-strength tablets per day) plus the Minocycline and Tindamax I think he’s switching me to this week… But! I am comforted by the fact that Minocycline has bacteriostatic action against bartonella (and mycoplasma), so even if there are some remnants, they won’t be able to replicate! :)

At any rate, Lyme is being.. interesting. I have not have a headache for about a week! Which is very ironic, because they’d otherwise become daily events! (Also ironic is I didn’t have a headache the last time I posted!) I just don’t get the bartonella-related headache anymore, the ones that hurt in the front of your head like a sinus headache might. I have about half of the symptoms I had at this time last month. The inflammation is way down so I haven’t needed any ibuprofen. Severe fatigue for several days, weak legs, numbness in my legs, episodes of arthritis, an internal tremor all day yesterday… What has surprised me with its reoccurence is the sensation of a bruise on the back of my left ankle, just like last month! It’s not an actual bruise, I don’t think, because it just spontaneously happened while I was lying down, and then I was limping the rest of the night. It makes no sense, but it’s obviously something Lyme related. It’s like achilles tendonitis that only lasts one night, haha.

I don’t have the results of my thyroid ultrasound yet but the technician said I only had like three little cysts??? That’s very good!

I leave you with a quote from Ralph Marston. :)

“Frustration comes from focusing on what you cannot control.
Achievement, on the other hand, comes from focusing on all the useful and valuable things you can do.

Resentment comes from seeing yourself as a victim.
Effectiveness comes from stepping up and taking responsibility.

If you constantly complain that life is unfair, you’ll blind yourself to the best opportunities.
Yet by simply accepting that what’s done is done, you’ll find a way to make the most of it.

Don’t waste your time arguing and fighting with life.
Instead, invest your time and resources in inspiring and encouraging the best in yourself and in those around you.

There is good, positive, fulfilling value to be lived every day, in any situation.
Choose to be the person who shines a light on that potential value and who brings that value fully to life.

Let go of the frustration, resentment and despair by letting the positive possibilities fill your awareness.
Embrace and enjoy the immense power that comes from taking full, unconditional responsibility for all you are and all you experience.”

a rainbow at night

First post of 2012! (Some pictures, a painting, and a recap.)

Your 2011 year in blogging

A New York City subway train holds 1,200 people. This blog was viewed about 7,300 times in 2011. If it were a NYC subway train, it would take about 6 trips to carry that many people.

In 2011, there were 99 new posts, growing the total archive of this blog to 123 posts. There were 37 pictures uploaded, taking up a total of 6mb. That’s about 3 pictures per month.

The busiest day of the year was December 29th with 83 views. The most popular post that day was How I Forgave the Doctors That Called Me Crazy.

Well thank you, everyone! I’ve recently begun getting a lot of hits on my black bean brownie recipe, too? Who would have thought!

I hope 2012 will be a productive year. In just a few weeks I’d have completed my bartonella treatment, hopefully. More on that once I actually get there, but I haven’t–to my knowledge–had any reliable exacerbations every five days. ;) My LLMD was impressed, and said one more month of treatment, to be sure.

Okay, so I’ve managed to post about life lessons, recipes, and articles lately, without any mention of how I’m actually doing… So symptom charting, right! I had a mini-flare (???) around the 16-23rd of December but it wasn’t too severe–the main symptom was excruitiating fatigue. For the past five days (about) I’ve had lots of what appear to be Lyme symptoms. This is pretty typical since I often have a Lyme flare up at the beginning of the month. The “fire foot”/”hot foot” sensation, in my left leg. The “dragging left leg” thing, yesterday. Numbness in my left leg, and today in my hands. Facial nerve disturbance (pictures I take of myself during this scare me a little!). Severe cognitive dysfunction. Joint pain, nasty headaches (but none today!), worse fatigue, minor palpitations, internal tremor, eyes going every-which-way, seeing things, temperature of 99.5, complete lack of appetite, needing ibuprofen every evening. I stopped having headaches for I think a week…then they were back. The past week I’ve also found several bruises–one on my ankle, one on my shin, one on the back of my arm, and another on the back of my elbow on the other arm. One actually appeared on a day I know I didn’t hit anything, so I’m assuming them to be sporadic. Anemia-related? It took me about a week to recover from Christmas, but it went very well–I took lots of rest breaks!

Randomly, my new favourite thing to put my lemon juice in, is pineapple juice. Three ounces of pineapple juice (natural, not concentrate!), 1 or 2 tablespoons of lemon juice, and three ounces of sparkling water–detoxing never tasted so wonderful!

Also randomly: I’ve developed a new migraine trigger of…cheetos. Yes, cheetos. Apparently fake “cheese flavoring” is not something my brain likes. Nor is the sucralose (splenda) I found in my antacids, of all places!

Since my last ability scale checkpoint in October (which was right after I started Bactrim, but before the Lyme had a chance to hit me again) I have gone back down a bit. In general, I was thinking last week that.. as much as I hate to admit it, I think I’ve overestimated myself on the ability scales, out of genuine forgetfulness of what it’s like to be healthy. I have been ill for a length of time that begets forgetfulness about what normal people, with their non-diseased bodies and mitochondria, are capable of…
I remember enough to know that I could go go go all day then sleep it off and be fine; that I could lift things all day and just be sore from it, not experience muscle paralysis; that I could think about a tedious problem (technology or math) and not get physically ill from the mental exertion; and that I could keep things in my short-term memory for more than a few seconds. But for the most part, I forget that my level of improvement is completely relative, and that my 40% or 50% is completely different than someone else’s. Perhaps those who read my blog and happen to be less ill, or those who are healthy, don’t realize that, either. It might really become a problem if I were to tell someone in charge of determinig my disability status what level I think I’m at, because 50% recovered to me, just means being able to take care of myself and my basic needs!
None the less, since my last checkpoint, I am for now at: 15% physical ability, 15% cognitive ability, and 40% symptom severity. I’ll reiterate that bad days are worse, and good days are.. well, better/higher up on the scale. For instance, today I was up a lot more, and New Year’s Eve was also a better day in which I stood up a lot and didn’t need much assistance. But in general, this is where I am. I need caffeine to take all my baths, and even then they are often an immense task, but I’m just so glad I still have those options!

I’d like to end this with some pictures I took on a day when I was bedbound, as well as one I took when I wasn’t! Afterward, a painting I did a couple of weeks ago, when my days were horrible but, for some reason, I felt better for an hour or two each night (probably from resting all day).

Clicking them will obviously enlarge them in the gallery, then if you want to read more about a particular picture (or comment), click on “permalink” and it will take you to the individual description page. Happy New Year, my fellow spoonies!

a rainbow at night