Been away from writing for the blog for a week, other than adding a few blogs and web sites to the right column of this page and responding to a few comments.
Just haven't been feeling my best - though over the past several months, my symptoms have been milder than usual and I was hopeful my last run of antimicrobials did a lot of good.
But last week, something new and annoying: Stabbing pain in my back and side, pain radiating down into my groin, fevers that come and go, and relentless nausea and lightheaded dizzyness from not being able to eat anything. Pain when I urinated, but it wasn't always there.
I was advised to take painkillers, go on a light diet for a few days, and drink a LOT. And rest. Sleep as much as I could.
Which I have, and not necessarily by choice... I have found myself passed out in the middle of a video game I was playing or something I was trying to read. And at night, I'd be up with pain and not able to sit for long - I didn't feel up to writing online much.
I'm feeling somewhat better now. I'm supposed to go back for a followup appointment soon.
In the meantime, I'm hoping I'll write something more here - it just isn't coming together that quickly at the moment.
CO,
ReplyDeleteGlad to hear you're feeling a bit better, but your symptoms are worrying.
Try to keep up your efforts to stay well-hydrated and rest whenever possible.
We'll know you're truly better once you're back up to speed as far as writing goes. In the meantime, please book a follow-up appointment at your earliest opportunity (and as finances allow).
I'm not exactly sure why, but pain does seem more severe and frequent at night -- and can certainly disrupt sleep patterns -- which may impact our immune systems and more. It's a cascade or "domino effect" that can have far-reaching consequences.
Let's hope you continue to improve in the days ahead.
Take care,
Rita A
Toronto
Rita A,
ReplyDeleteThanks for stopping by. Are you the same Rita A as on Lymenet Europe?
I am resting and reading and hoping to make some kind of post soon. I have had blood tests (CBC, metabolic panel, others) and a urine test, and all came back normal - they didn't see anything extraordinary. Thus the general advice to rest and to return for a follow up.
I have health insurance at the moment, so expense is not a concern right now. I just hope whatever is up is temporarily annoying - I've had strange acute symptoms and pain come out of the blue ever since that tick got me. Before this, I only got occasional URI's and sinus problems. Life with Lyme.
CO,
ReplyDeleteYes, I'm RitaA on LymeNet Europe, but I'm now spending more time back on the CanLyme (Canadian Lyme Disease Foundation) website, where I use the same ID.
I really believe that some strains of Lyme disease -- especially when accompanied by co-infections -- are more virulent than others and may have a lasting effect on our immune systems. My ID specialist told me to expect my immune system to go into overdrive any time I get so much as a cold (which oddly hasn't happened in decades) or a sinus infection, etc. An immune system in overdrive is one thing, by I don't recall searing pain down my spine (or elsewhere) during any cold or flu I had in my younger days. Achy, fatigued and otherwise miserable -- yes -- but nothing that compares to the hell of LD on a bad day/night.
That said, if you want to see how one amazingly creative woman deals with Lyme disease, you might like to check this out:
http://killthatlyme.blogspot.com/
I saw her blog for the first time yesterday and found it rather moving. We're an international community thanks to the internet and blogs, and for this I'm extremely grateful. As you know, there's much more to Lyme disease than the pure science of it, although that's where my mind tends to go. I haven't painted (moistly watercolours) or written poetry in ages, but this Norwegian woman who now lives in Sweden has inspired me.
As do you in a slightly different way.
Take care,
Rita A
Toronto
Rita A,
ReplyDeleteI am thinking of checking out CanLyme more often and perhaps posting there in the future - haven't decided yet. I've ended up there after googling for a few things in the past.
I think that Borrelia and spirochetes as a whole are more complex than has often been discussed, and there is still more to learn about them. Once more is understood about their pathogenesis, the more that can be done to effectively treat infection.
I got two colds in the past couple months, so I think my immune system was working - plus until recently, my symptoms had improved. It was a shift from severe-moderate to moderate-mild, which was great - gave me a break and some more sleep for a change. Now it's back to sleep being a bit screwed up again due to pain. I think the insomnia has to be one of the hardest parts of dealing with this condition.
I did check out the link to the Norwegian woman's blog - talented and creative storytelling art she has there. I think she could make and sell a book of her art - someone would like it. It's not really my taste, but I appreciate the thought behind the art in relation to Lyme disease and struggling with it.
I've considered making art for this blog, but I fear it would be inflicting additional pain upon my readers - so I haven't gone there yet. But if xkcd could make a comic using stick figures, maybe there is hope for me yet.
I inspire you? How? I'm curious. Have I inspired you to do anything specific you weren't doing pre-Camp Other blog?
CO,
ReplyDeleteYou inspire me by returning to logic and science despite the rhetoric that tends to prevail when it comes to Lyme disease. You look at the facts and raise good questions and sometimes even offer solutions.
I considered myself to be a generally fair, open-minded and reasonable person in the past -- even receiving compliments from family members and colleagues for my diplomacy and ability to smooth ruffled feathers in difficult situations. My patience and ability to perceive shades of grey -- instead of black and white -- is something I pride myself on most of the time. It can lead to nearly endless analysis and review at times, but that's a small price to pay. When reading about the blatant injustice experienced by many Lyme disease patients while I was reading "Cure Unknown", I was left with little doubt that something was terribly amiss. The one thing that became clear to me was that the vast majority of people in the world had no idea what was really going on unless they themselves had their lives turned upside down by Lyme disease. I must admit that I couldn't muster much sympathy for the IDSA folks who crafted and defended the Lyme disease treatment guidelines despite some fairly obvious flaws. It seemed that many healthcare providers were willfully ignoring the fact that patients were suffering due to something caused directly or indirectly by Lyme disease. Whether it was persistent infection or an autoimmune issue didn't matter much to me at the time, to be honest. I was simply outraged by the unfairness of it all.
Although I have discovered over many decades that medicine isn't quite as straightforward as many people have been led to believe, I do agree that much about tick-borne illnesses will be clarified in time. It's only with 20/20 hindsight that mistaken beliefs become so obvious, but for those in the thick of things in the present tense, the uncertainty is very real. I have a difficult time understanding people who hold on firmly to the idea that what they believe cannot possibly be wrong or incomplete. That type of overconfidence is something I have encountered in physicians who are later proven wrong because I'm rarely a textbook example of anything (according to one of my now-former doctors, who offered this as an explanation). I learned at a relatively early age that doctors don't have all the answers.
That said, I'm thankful for the science that will one day help to clarify why some people become so ill as a result of Lyme disease, whereas others do not. I believe the day will come when a relatively simple and accurate test for Lyme disease will be readily available, and treatment will be streamlined, but I don't believe these things will happen overnight.
It is often difficult for me to imagine a middle ground where a spirit of cooperation will prevail when it concerns Lyme disease, but that is what is required to make the needed changes happen sooner rather than later. When reading your blog, I am reminded that clearer minds (at least on our good days) can and will prevail. That is how you inspire me and no doubt others.
I doubt very much that your artwork would be painful for any of your readers, and it might even be therapeutic for you, so I would encourage you to continue considering this option.
Take care.
Rita A