“Hey Zilla, why don’t you blog more?”, “You should totally be blogging about this.”, “We’d link you more if you posted more.” – well meaning knives from beloved friends straight into my broken heart. I cannot even begin to tell you how many hundreds of links I have collected with the intention of sharing here, how many posts started and abandoned, how much I’ve read in research for things I want to cover here only to be too tired, sick, crippled up, and in pain to be able to do a damned thing with them and need to go lie down instead. I hate this.
I am fighting late stage advanced Lyme Disease, anaplasomosis/ehrlichiosis, a systemic fungal infection, and who the heck knows what the hell else because testing for these sorts of things is totally unreliable. I linger in illness because treatment is as hard to get as diagnosis and the things that exist which could help me get better faster or at least make my condition more tolerable and restore some of my function are out of my reach because they are so damned expensive. The specialist is a 100 mile round trip away; so in addition to fees for appointments there is the need to pay for gas to make the trip (and the trip kicks my ass because I am so weak and frail these days and it leaves me exhausted for many days after I get home), then there are prescriptions (some are cheap, some are quite costly), and while there are many OTCs, supplements, vitamins, natural remedies and diet suggestions that could go a long way towards helping me, they are not cheap. Some people who suggest I try this thing or that thing in addition to my treatment because they heard how great they work seem to think that those things are free, even the probiotics (or yogurt) I am supposed to take while on my antibiotics can not be squeezed into an already depleted budget – and I have had people actually get angry with me because I have not acted on their suggestions (because I can’t pay for it).
I want to get better, I want to be able to not only blog like I used to, but also to be a better mom, wife and friend to the people I care about, I want to not be hurting every single day of my life, to not wake up every morning barely able to walk and feeling like I’ve been hit by a train, I want to be strong enough that I don’t get out of breath and feel like I’m going to pass out just from the effort to pull open the door to my fridge to get my kid a drink, I want to do a lot of things, but I can’t – not without help.
Some symptoms have improved, while others have gotten worse and new ones have developed. The indescribable pain from deep inside of my bones seems to be finally quieting down some (dear God, please don’t let it ramp up again anytime soon, I beg of you) but now the joint pain seems worse, especially in my knees, feet, hands and shoulders. Sunlight no longer instantly burns my skin, but any kind of brighter than dim light still really hurts my eyes and I have weird vision problems sometimes (I’d like to get my eyes checked but that’s another doctor visit I can’t pay for and I also can’t pay for the new glasses I know I need because my current prescription is over 7 years old and they told me back then that I should get looked at at least every two years since I am at high risk for glaucoma and something showed up on my last exam that worried them). I have to hide under my hat (it’s a fedora, fellow bloggers!) to try to shade my eyes since I can’t get prescription shaded lenses for my glasses (I’m nearsighted so I need glasses for everything but reading up close). I’m not getting as dizzy as much as I used to, but my headaches are worse, and they bring neck pain with them. I’m still tired all of the time but now I get spells where I feel as if I am about to jump out of my skin, can’t sit still and can’t focus on anything (I heard that may be because Lyme screws up the adrenal glands), and even then still feel like I need a nap but can’t rest if I tried. My finger and toenails are starting to look more normal and my hair isn’t falling out as much as it used to (it feels thicker as well), but I still have rashes of itchy miserable blisters all over the skin along my jawline, down my neck, and on my chest, abdomen, and back which drive me crazy and nothing really ever seems to help for very long at all. The itching leads to scratching, and I often don’t even realize I am scratching until I draw back a bloody hand because I’ve torn the flesh, and now I have freaking holes and scabs all over me. It sounds superficial, but I really do miss being able to look sort of pretty if I tried and this is beating the hell out my morale as well. My teeth are still a mess, and that root canal still has a temporary filling over it that I have to refill myself with some goop they sell at the pharmacy (which actually works pretty well, I must say) when it falls out because I am in no shape to get into the dentist’s chair at this point and more oral surgery might not even be safe to do until I am more stabilized. It is hard to smile when you know how bad your teeth are looking. Of course it’s hard to smile when you feel like I do physically anyway, but I do try – at least when my family is looking at me!
I have an appointment this Saturday at the specialist which is an hour’s drive away in each direction, I will try to discuss what has gotten better and what’s gotten worse and try to get them to take my skin thing seriously because it is really running me down, and ask them if they think we should stick with what we’ve been doing or maybe modify the course of treatment. Unfortunately, I think hubby has to work that day, so I’ll have my kids with me, hopefully they will behave this time. Wish me luck.
So now you know why there is so little blogging going on here. If you liked the type of stuff I was able to do here before I landed in Medical Hell, please consider hitting the tip jar if you are able to spare anything at all so I can be better equipped to fight for my health (and my life) and get back to writing about things that you might enjoy reading.
In the mean time, you can follow me on Twitter, because that is something which is easy for me to do as it doesn’t take a lot of effort so my feed is pretty busy (and tweets also auto post from that facebook page I run which has co-administrators who help out), or have a look at the old alternate blog site, Femininican, because I recently discovered the ‘lazy blogger’ re-blog button that lets me post about things I see on my friends’ wordpress.com blogs easily to Femininican with just one click and very little effort on my part (but be warned: because I host no paid advertisers on that site, I do not much bother to watch my language when I make a comment to accompany a re-blogged post; consider it “Zilla unfiltered”), and of course there is still the awesome A-C page, which, as I already mentioned, has additional administrators who post interesting things that you might like so go check it out.
Please keep me and my family in your thoughts and prayers. I do have plans for new blog posts, and tons of links to use in them at the ready, and I hope to get to them soon, but I can only get to them during the brief periods of not feeling too horrible that I occasionally enjoy and hope I may get a few more of those again soon. Thanks for stopping by, sorry about all the whining, I just thought some of you might want to know why there have been so few blog posts that have been worth reading for so very long.
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Hitler is a doctor at the Infectious Disease clinic who denies that chronic Lyme exists…until he can avoid the truth no longer. Abbreviation guide: LLMD is a Lyme-Literate Medical Doctor. ILADS is the International Lyme and Associated Diseases Society. Find comprehensive treatment guidelines at www.ilads.org.
IDSA stands for the Infectious Disease Society of America whose massive financial conflicts of interest cause them to engage in a major cover-up of the existence of advanced late stage (also called Chronic) Lyme Disease and, unfortunately, the government, most of the medical community, and insurance companies adhere to their outdated and dangerously incorrect guidelines for diagnosis and treatment rather than the current diagnostic and treatment guidelines developed by ILADS – the International Lyme and Associated Diseases Society – which properly address the severity and persistence of this dangerous disease and related potentially deadly tick borne infections. To learn more, see my post about the massive institutionalized systematic Lyme Disease cover-up HERE and watch the film Under Our Skin HERE.
This post is linked at Goldfish and Clowns. Thank you, Jerry!
This post is linked at 1389 Blog – Counterjihad! Thanks, 1389!
This post is linked at Zion’s Trumpet. Thank you ZTW!
This post is linked at MooseandSquirrel. Thanks, Natasha!
This post is linked at Capitalist Preservation. Thank you, Will!
Email Me: Zilla@MareZilla.com