It feels like I’m talking about someone else’s life, sometimes…

So, in my last post, I said I’d give myself another two weeks off treatment and then re-evaluate my state of health to see whether or not I should restart treatment for Lyme disease. Something happened to help me make that decision.

I got an ear infection. Just a minor bacterial one which I get about once a year if I’m not already on antibiotics at the time. (Well, at least compared to a VIRAL ear infection, they’re minor.) I’m a miniature pharmacy so I already had the Z-pack needed to treat it.

I took one pill (and you’re supposed to take two at first, but I didn’t think that’d be smart for me…I was right) and spent that night feeling unimaginably ill while trying not to have a mental breakdown.

Fellow Lymies already know this, but: Zithro is the cousin of the medication I’ve been on (Biaxin) to treat Lyme disease, and also a potent treatment option in itself, so taking it affected a lot more than just trying to help my ear. There was fever, chills, constant shaking, dizziness, numbness, nausea, and a host of other things, like not being able to remember my best friend’s name (?!?!). But the real “kicker” was that I felt that way from just one pill

After being off meds for a month and a half, I can’t even handle one pill. :|

I can only handle half-a-pill, which is less than a child’s dose, and I can only hope it will be enough to cure my ear infection… But it’s definitely not enough to treat my disease. If anything, these tiny half-doses may keep things from progressing too quickly, but will also make me a target for drug-resistant bacteria, and then talk about being in a mess…!

This does take away the choice (mostly) of whether to begin treatment again or not, because it’s obvious I physically cannot do it, and mentally, I am still so, so tired.

Toward the middle of November, I thought I was doing better. I left the house three times in a week, and (not the same days, but) I had three consecutive days with no pain. So I thought I was getting over the relapse, until this happened. I was just a little crushed… But it is what it is, right?

I’m not sure what’s going to happen from here. My friends say I can always begin treatment later after I’ve rested a bit more, but this is the equivalent of waiting until a cancer is stage 3 or 4 to begin treating. The disease is advanced, it’s harder to kill, and the treatment will be that much worse. (And the Lyme disease is stage 3, meaning it’s.. everywhere. And it does not wait for you to be able to handle antibiotics.) But regardless, this may be my only option, and all I can do is hope that with more rest, I will be able to begin treatment again in the future, and be able to handle it.

If not, well… C’est la vie, que sera sera, and all that jazz.

 

I stopped doing the ability scale checkpoints because they are a reminder of how I haven’t made much progress since finishing bartonella treatment. Now, I don’t want to make that sound mediocre… If that disease was still present, I wouldn’t even have the luxury of wondering whether or not handling treatment was an option; I’d just be dying very quickly again!

But the truth is still that I kept waiting for a stable period to make an assessment, and that has yet to happen. I repeatedly had to pause treatment, take such-and-such different medication, take this-and-that medication to balance out the first one, then relapse, recovery, relapse again, and whatever progress I did make, I just kept going downhill again.

I made my last checkpoint at the beginning of this year and I can honestly say I am still at that place, in general, with the obvious adjustment that my symptoms are more severe for the time being due to relapse. But at least I am not any worse than that. I like being able to breathe and walk on most my days. And I do think I am a bit recovered from this relapse that began at the beginning of October.

I can handle longer periods of light, I can be out of bed more, and I have longer stretches with less pain. The translation of that is: I can usually use technology for several hours a day instead of bursts of twenty-minutes until I couldn’t bear it anymore; I make it out of my room several times a day instead of barely once, and sometimes I can leave the house; and my “usual” needed dose of pain medication is once a day, instead of always twice a day…and I have random days where I don’t need any at all. So,

  1. without intervention of medicines like caffeine (which is the only thing that enables me to do things like take a bath, or have a stable blood pressure), or pain medications (which are the only reason I can be active at all); and
  2. with 100% being completely recovered,

I am currently at 15% physical ability and 20% cognitive ability. As we all know, there are better days and worse days, but in general…

And with 100% completely symptom-free, I am at 10% symptom severity. Though I think the chart should be in reverse for that section, because initially “10% symptom severity” sounds as if I only have symptoms 10% of the time, and it’s the exact opposite:

“Moderate to severe symptoms (6–8) at rest. There is moderate to severe pain (6–8) and/or sensations of illness/dysfunction throughout the body and brain for much of the day. Symptoms are severe (8) following any physical or mental activity with a recovery period as low as hours, or as long as days to months, or longer. It is all the person can do to just get through one day at a time.”

 

Thankfully I do have medications to help me get through this difficult time, and all the support in the world from my friends, fellow spoonies, and doctors, about whatever decision I have to make. (My family unfortunately has no idea of the magnitude of this… Right now, I’m not sure I’d want them to know, until I can give them an idea of what we’re looking at…) And I have an appointment with a pain management specialist next week, and I see my Lyme disease specialist on the twelfth. So this is where I am at!

a rainbow at night

(P.S. – Today is my 2-year WordPress Anniversary!! I never imagined so many people would be helped by the words I share. Thank you, all. Stay strong with me!!)

I’m listening to the crickets chirp.

It’s one of my favourite things to do at night when it’s very quiet. Perhaps because it reminds me of the peace I had at my own home. I would listen to them every night as I fell asleep, the frogs and the crickets, and every morning I’d be awakened by birds chirping outside my window… Now I get that here, too. It’s one of the perks of summer. :)

 

The past week I decided to take a break from social media, Facebook and Twitter and the like. I still updated a little, but I couldn’t keep up with everyone else. I needed a social break. Also lately, in my social frenzy (I like people and interaction, I really do–don’t let the sick-person thing fool you), I realized I was starting to backslide into giving my very precious energy to people who don’t return that concern. It’s something with which I’ve struggled to maintain balance for years. I suppose, because for a small time I was able to be more social than usual, it caught me by surprise when that was no longer the case. I was reminded just where my energy was going–into relationships that were otherwise a one-way street, just me conversing with people who, for the most part, wouldn’t even bother to check on me if I suddenly disappeared. So I needed to back up and regroup, gather my thoughts and focus on what (and who) is important. It all helped.

And I made two great accomplishments this past week!

 

First, I walked inside a supermarket to do my grocery shopping and did not need any mobility assistance! Secondly, I ate a salad without the autonomic neuropathy screwing over its digestion and causing me severe pain later!

I’ve made several milestones this past year, as far as leaving the house. My first trip into an outside building using only my cane instead of being in my wheelchair–just standing up for those few minutes was amazing. My first minor trip inside a real store without needing a mobility scooter to do my shopping (though still earplugs, and sunglasses)–standing up on my own for more than a few minutes, amazing still. Now I’ve done my own grocery shopping, walking around completely on my own, for what must have been half an hour, with only earplugs. Another step in the right direction. :)

I wasn’t able to drive, or stand in the checkout lane, or put up any groceries, but I’m sure that will come later. The following three days (or, the past three days, I should say) have been spent recovering from that excursion. One with M.E. recovers by doing absolutely nothing. I was fortunate to not have too much of a neurological overload (probably because Lyme & co. are being beaten down?) so I was able to watch DVDs to pass much of the time. I went into rest-mode immediately after we returned, but the main start of the crash occurred roughly 24 hours later, very predictably with my legs. I took extra Co Q-10, and L-carnitine, and magnesium, and made sure I got enough protein, and maintained adequate hydration. After a decade with this disease I’m pretty used to coping with what inevitably occurs after so much activity: the muscle relapse and inability to be upright, from an overworked heart muscle and damaged mitochondria. Without all my supplemental intervention I would definitely NOT be at all functional, yet. But I’ve learned a few tricks or two! ;)

As for the salad, well… I love raw vegetables almost more than cooked ones, and I love fresh salads. But for the past several months, while my nerves have been trying to heal with the help of these antibiotics, I could not eat any raw vegetables (or anything high in fiber, for that matter) lest it trigger a neuropathic “episode” of my digestion basically.. stopping. My body would start to digest and then just.. stop. It’s incredibly painful, and something I’ve dealt with sporadically since first starting treatment to kill these infections, but which progressed pretty far before any substantial bug-eradication could be done. I’m not sure what the exact specific name for it is (I’m assuming something along the lines of gastroparesis, yes?) but it lasts for hours and I have to break out the caffeine to jump-start my nervous system and get things digesting my food again. :\ (Silly vagus nerve, either causing things to do too much or too little.) Needless to say I’ve been avoiding that horrible scenario… Until today. I thought enough time had passed to at least attempt some veggies. So I ate a salad…and everything went as normal! It was amazing. I’m hoping I can get back to my usual pre-neuropathic diet, or at least incorporate more of the things I truly enjoy eating.

 

As far as peripheral neuropathy goes: Much better! I can wear normal clothes again, for instance. And as far as the asthma flare up: My cough is now gone completely. :) My eyes have also been better, hence me being able to watch DVDs a lot. However, I did have a headache flare up last weekend, probably because I always get a flare up (Lyme or Mycoplasma, it’s anyone’s guess at this point) around the start of the month. I also had several days worth of migraine attacks (with horrendous postdrome) because I didn’t realize soon enough that something I was eating repeatedly had sucralose/Splenda in it. Erm… Some number of days ago I had a hive again. Any nick or cut I acquire refuses to clot for a long time, but with being on ibuprofen 2-3 times a day for the past two months, I guess that’s to be expected. My inflammation must be in a down phase, because I only have to take one ibuprofen per day right now. :) Probably because of the more-advanced anti-inflammatory (corticosteroid) I’ve had to take in the form of Dulera… Oh, and the urinaylsis came back normal, but we expected that much, right?

One thing I do wish I could start is my Zoloft, because my OCD is borderline raging recently, from so many months not taking anything for it. I am on so many prescriptions right now that I cannot bear the thought of adding something else. I have never been on so many prescriptions at once in my life! I’m trying to keep in mind that this is just a temporary thing, to help get me through this phase of treatment…

That’s all for now. It was nice to summarize my improvements for a change. :)

 

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

Migraines and caffeine and surprises, oh.. yes!

I’m pushing it by typing this, but I just can’t help it. I will rest extra tomorrow to make up for it.

I’m excited. There are flowers in my room and I’ve realized they make me very, very happy. Today while lying in bed, I looked around and just admired how incredibly gorgeous my surrounding are, and allowed myself to feel gratitude for it. This is what I wanted, after all–a place to feel peaceful. The weather was wonderful and I looked out of my open window.

That headache I got the other day was a migraine. It kept going away and coming back, so it had me confused, and it didn’t respond to Treximet, which had me more confused. But today, not wanting to take another Treximet because of how awful they make me feel–numbness and dizziness and generally an awakening of all those weird symptoms I get during my autonomic neuropathy “episodes”–I chose to take a risk. I’ve been able to handle some caffeine for a while now, and recently I’ve pushed the boundaries further with no ill results. So I took an Excedrin Migraine, the one thing I’ve used to control my migraines for the past thirteen years. Some may or may not remember the insane reaction I developed to caffeine, but today, nothing happened. Oh, except my migraine going away, that is! I didn’t get any of those dreaded symptoms! I feel I am finally free and healed of whatever occured in my body/brain that made caffeine such a trigger for the past nine months. And I am elated!

Caffeine is a drug, and one that helps me do far more than just stay awake. I can stay awake on my own. But now I can use it to stand up in the mornings, earlier than the two hours I usually need to avoid passing out. Now I can use it to help me digest food if I begin experiencing post-prandial hypotension. Now I can use it to get rid of my migraines. Now I can use it to help my brain in general! I mean, look at me, typing these entries!

But I am not going to start taking it everyday. Nor am I going to allow it to mask my symptoms so that I overexert, which is dangerous. I’ll probably mess up a few times–not being used to differentiating, after not using it for so long–but that’s all right. I will figure it out!

With that in mind, I shall close this entry, but I wanted to post about this wonderful news. :)

 

a rainbow at night

(P.S. – Oh! And I have a surprise for December!)

A monumental moment!

Well, the beginning-of-the-month flare might be vanishing, but perhaps it’s not completely gone yet.

For the past two day (prior to today), I was having that left-sided “fire foot” sensation. I imagine people with peripheral neuropathy will know what I’m talking about. It’s as if you’ve momentarily stuck your foot into a fire, hence, “fire foot.” It usually occurs during my Lyme flares, but I’ve heard a lot about it concerning bartonella, which has an affinity for the feet, so I’m not positive. Also, my brain fog for the past.. I’ll say four days (again, prior to today) has been ridiculous. I’m usually ten times better cognitively, while on my olive leaf extract, but not even that has been able to save me from whatever’s been happening. The main event of today has been more peripheral neuropathy, but of my left arm and hand, to where the skin feels raw; even the sensation of water was painful. So highly uncomfortable, but I’d like to think it’s happening because the bugs are being killed there. And that’s about all. Some “leftovers,” if you will, but this is still a great step up. I can’t wait to see what doesn’t happen by June! :)

Neuro status: I’m still seeing things, but not as much. My face still tries to slant to the left every now and then. I’m still struggling with dystonia and parkinsonism, but it’s no where near as severe as it’s been in the past. I now only have an action-oriented tremor instead of a constant tremor. I’m still having autonomic neuropathy with my vagus nerve, but it’s so much improved I only notice during a larger-than-normal meal.

So, on Tuesday we went to Walmart. It took everything I had to get out of the house. My supplements, Ubiquinol, a good prayer, some meditation, and Vicodin. (I can’t have caffeine, if you’ll remember.) But I did it! Then Yesterday I “payed for” it with a crash. Then today, after a whole bunch of rest (and ubiquinol) to help the crash, I was mostly recovered! (I cannot, cannot, cannot stress enough the value of Ubiquinol or Co Q-10 during this. I just can’t. If you’re reading this blog and you have M.E., or even if you have Lyme, you need to be on this supplement. It is worth every dear penny.) So today, being recovered, we had a few more places to tackle. Post office. Dog medicine. Dog food. I got out at two of the places, with just my cane!!!

It’s the first time I’ve been in a store (or any building) without my wheelchair, since last year.

I’m slowly but surely accomplishing my little to-do list! This morning I even brushed my teeth and washed my face, while standing up! *waits for the resounding gasps*

Oh, treatment is working.

a rainbow at night