What Fresh Hell Is This? UPDATED

This is a medical update post. As most of you know by now, I am very ill with advanced late stage Lyme Disease and I am also positive for Ehrlichiois, which is another tick borne infection, I may have others but the tests are notorious for false negatives so right now I am being treated for what I’ve tested positive for and then they will treat me based on clinical evidence for whatever else my still existing symptoms imply that I may also have.

I was hoping I’d be improving by now, but I seem to get sicker by the day, with each day bringing some new variant of feeling horrible such as nausea, vomiting, gagging, dry heaves, dizziness, fainting, bone pain, random uncontrollable limb twitching, weird muscle spasms, vision problems, miserable skin irritation, and always being just so damned tired, along with the neurological and cognitive issues I have been experiencing on & off, which is known in the Lyme community as “brain fog” and now I have a new scary thing to deal with and I am hoping someone reading this may have an idea of what the hell it is.

For the past few days, any time I ate or drank anything that was a little bit tart or tangy, I would get a painful muscle spasm starting on the right side under my tongue where saliva comes out, the spasm would spread under my chin and down the right side of my neck and also upwards along my jaw to my ear. It would be tender to touch but I could massage it and it would get better after 20 minute or so, but these attacks now happen no matter what I eat and the one I had last night STILL has not eased up. The pain has spread from the above mentioned areas to the point where it wraps around to the back of my head on the right side, where there is a lump, and my neck in the front is swollen on that side with a soft puffy area on my throat below the swollen neck gland that is about halfway down my neck and almost to where it attaches to my torso. It is painful and it is scary! I don’t know what the hell it is and I am almost afraid to find out. Even my right shoulder is now effected by it. I do not know if it is related to the tick borne disease that I have, my dental problems,  or if it is something else.  I do not have money to see a doctor today to get it checked out, although that is what my Lyme Specialist suggested when I called his office for this morning for advice.

Tomorrow I have regular scheduled appointment with my Lyme disease doctor, his office is 50 miles away and I have to pay for the visit when I get there. This will clean me out and I do not even know if I have enough gas in my car to make the round trip.

The wonderful people who have helped me with Tip Jar donations have covered the cost of my last visit to the specialist, the gas to get there and back, my initial medications, and the supplements that I also need (such as probiotics to help with the side effects from treatment) and have also helped me to keep up with our other bills here, but I am now just about tapped out from all of my resources and Tip Jar Hits had tapered off and then just about dried up completely after people began committing identity theft against me and fraudulently impersonating me all over the internet.

I started to write a medical update post for this blog a few weeks ago, but I never finished it because this illness is just taking so much out of me, so I am just going to paste from the draft of what I had written so far below because I have a feeling I may never get around to it otherwise:

It has been a rough couple of weeks as I have been ill while the world marched on without me. It’s time to try to catch up a bit. As most of you know, I am fighting Late Stage Lyme Disease, and my friends in the Conservative Blogosphere have been helping me to be able to obtain the specialized medical care that I need with the Zilla-Aid-Athon (twitter hashtag #Zillathon). I have learned that there is an official color for Lyme Disease Awareness, it is lime green, or Lyme Green. Tom Mannis at Chicago News Bench has added the Zillathon widget in Lyme Green at my request, and I must say, it’s pretty cool:

 

Zilla Aid!
 

You can visit Chicago News Bench to snag the spiffy widget above in Lyme Green, or the original Pink/White & Pink/Black that were designed by Buffoon of Wazenmentobe, in a variety of sizes if you’d like to help out!

By the way, Tom Mannis, whose idea it was to hold a Zillathon to help me pay for my medical care, could really use some help right now. He is a good friend and a great Conservative who has fallen on hard times since he lost his job last year. Please consider hitting his tip jar, if you can, or, if you or someone you know needs someone to help with Web-Design, hire him! I followed Tom’s story from when he was about to lose his home and then what happened after that, and I have never seen someone face so much adversity with such a positive attitude; he turned his personal tragedy into an adventure for all to read, but even the most optimistic soul can get worn down when time continues to pass but opportunities to better one’s situation fail to pan out. A couple of bucks here or there or a good word in a few ears that may lead to an opportunity would make a huge difference for him, I am sure.

As I explained previously, it is difficult to obtain adequate care for Late Stage Lyme Disease, due to bad politics and cronyism, you an learn more about why that is so and also just how devastating this miserable disease really is by watching the film Under Our Skin, I have a free version of it posted HERE. I have found a Lyme Disease specialist and I am now under his care, and thanks to the kind people who have Hit My Tip Jar, I was able to pay for my first visit and also pay for the gas that I needed to get there (it is 50 miles away).

I went to the Lyme Disease specialist (the Lyme Disease community – yes there are a lot of people are afflicted as it an epidemic growing far faster than AIDS – call them Lyme Literate doctors, or LLMDs) on March 13th, and the people there were very nice, I like my doctor  and I learned a lot while sitting in the waiting room talking to other patients. I saw a beautiful young girl who has such severe neurological problems from Lyme that it broke my heart. I spoke to a man who spends $1200 a month on oral antibiotics but was happy about it because it is “so much less expensive” than the IV ones had had been on previously. I had a lot of blood drawn from me for tests, and I got the results of those tests on March 20th. In addition to Lyme Disease, I am also positive for Ehrlichiosis, another tick born infection that I have likely had undiagnosed and untreated for many years. I may also have other co-infections, but their presence may be masked from detection in the tests due to the fact that I am on antibiotics and also because even the best tests are notorious for false negatives.

My dog Maggie had gotten Lyme Disease and also Ehrlichia when she was alive, and her neurological symptoms were terrifying. Like me, she had been infected repeatedly, and it caused a lot of permanent damage to her even after the acute infections had been treated. It does make sense that I would catch similar infections since it happened on the same property, but remembering how my poor sweet dog suffered and being well aware of how ravaged by illness her brain and body would get, honestly scared the hell out of me when I learned that I too am infected with Erlichia and it took me a few days to process and accept this new information. There were some tears and a little bit of freaking the hell out when nobody was looking, and of course, because this is me we’re talking about, more research.

While a very nasty infection to be afflicted with, Ehrlichia is no big deal if caught and treated early, but it can become very dangerous after a few weeks or months without treatment, and I have likely had it for years. Ehrlichia attacks the body’s white blood cells and if it isn’t eradicated, it can ruin one’s kidneys, liver, and other organs, and even infiltrate bone marrow – which would explain the deep pain I have from inside my bones that nobody has ever taken me seriously about before (I would tell the doctors that the pain is inside my bones, the would write “joint pain”, I would insist that it’s not the joints but the bones between the joints, and they would write “muscle pain”, or tell me I am imagining it because I’m depressed or something, the jackasses, and this has gone on for many years with many different doctors). Of course white blood cells fight infection, so I am very fortunate not to have caught all kinds of other horrible sicknesses, because someone with a bunch of dead or damaged white blood cells is not going to have a very functional immune system.

I had already been feeling quite ill when I made the nearly hour long ride to the new Lyme Disease doctor and back, but the ride really beat the hell out of me and there was extra pain piled onto what I already had afterwards. The next day my daughter had a school event that I needed to attend with her, and I knew there would be a lot of walking and standing, so I brought along a cane that had belonged to my father to help me, that was a mistake, it messed up my already fragile self esteem and actually made my pain worse because it did not take the pressure off of my lower back, so I ordered a low priced tall walking stick from Amazon to help me when my lower back pain makes it hard to walk and it has been incredibly helpful, plus it looks much cooler than a cane (I am not yet 40, the cane made me feel much older and more fragile).

I use the walking stick when the pain is really bad, but I still feel weird needing something to help me walk so I try to avoid having to go out in public when the pain is bad and when I need go to the grocery store I just  use a shopping cart to help hold me up. My eyes have become very sensitive to sunlight, I am nearsighted and need to wear prescription eyeglasses but I cannot afford prescription sunglasses, so now I have to wear a hat to help shade my eyes, I have a cheap hat and I feel a bit silly wearing it, but it helps. I do not like that I look goofy and while I know that my appearance should be the least of my concerns, but when you feel bad physically, everything else just piles on. I hate that there is so much around the house that needs to be done and I am simply not up to the task, I hate that I can’t do more fun stuff with my kids while they are still little and we should be making great memories, I hate that I appear to be getting worse and not better, and I hate not knowing what fresh hell awaits me next.

If any of you reading this has any idea what the heck could be causing the new weird thing happening in my neck, please share your ideas in the comments section below, and if you are able help me out by hitting my tip jar, please know that it will mean the world to me and I’ll be forever grateful. I live for the day when I feel like I am living again and able to do more stuff again, and look forward to writing about things other than this stupid sickness. I still try to keep things going on the A-C page, and Corbinian has been helping out with that and keeping the blog alive, and I am also still active on Twitter, because that is easy to do. I will get back to the kind of blogging I used to do before I got so sick as soon as possible. Thank you to everyone who has been helping and who have offered kind words, thoughts and prayers. I love you all.

 

UPDATE March 14, 2012 9:00 am:

I never did get to have the weird thing in my neck checked out the day I originally published this post, as there was nobody to watch my son and I worried that paying for that visit would leave me short when it came to paying to see the Lyme specialist the next day, but I had been putting heat on the area non-stop which seems to have helped, and then late that evening after brushing my teeth when I rinsed & spit, I felt a little hard thing (like a small pebble) come out, and a few hours after that the spasms started to wane and the swelling began to go down, so I assume it was a “stone” in the saliva gland, as some readers had suggested. It still bothers me a little with anything tart, but it is much better than it was and not as scary now.

Thank you to everyone who has hit the Tip Jar and/or offered kind words, thoughts and prayers!  I was able to get to and pay for my appointment with the Lyme specialist yesterday thanks to you. Unfortunately, I could not find anyone to watch my 4 year old son, The Little Resister Boy, so I had to take him with me. He is a strong, healthy and generally healthy little guy, but he does have some special needs issues, likely due to the fact that he was a preemie who was very very sick when he was born. The Boy was happy on the long ride to the doctor’s office, although I did have to pull over once on the highway to get his car seat straps back on him after he’d figured out how to get out of them! I normally bring a stroller with me when I have to take him places where there will be a lot of waiting around so that I can try to keep him in one place and out of trouble, but he adamantly insisted that he was a “big boy” and promised he’s sit with me like a good boy in the office.

Once inside the office, he proceeded to sit in every available seat, crawl under the seats, introduce himself to every patient and annoy some of the older children who were there.  He is very fast and hard to catch but I did plant him in a chair and sat on it in front of him in an effort to keep him in one place, he was not interested in the half dozen toys we’d brought along either (sigh). Then he started to freak out and asked for his stroller, so I had to carry him out to the parking lot and hold him in one arm while I got the stroller out and struggled to open it with one hand. Finally I got him in it and we went back into the office, but the door was a pain in the ass to open and push the stroller through and its big metal handle slammed into the top part (the illium?) of my poor hip bone (ouch). We went back to my seat and he started howling about how he wanted to be out of the stroller, but I’d had enough of him running around so I tried everything I could think of to keep him happy where he was.

After an hour and a half of waiting, I was finally called into the examining room, where my son promptly had a full blown meltdown, complete with screaming his head off, crying, and trying to throw up, because he has a phobia about these things, likely because of all the medical interventions he had when he just a baby. Telling him that the doctor visit was for Mommy and NOT him had no effect, it was a panic attack (poor little guy). The clinician who saw me (this was not the doctor I’d met last time, this was someone else who worked there who I had not met before) was very kind and understanding, I did not ask, but I bet she has kids because she seemed to have the kind of patience that comes with experience form this sort of thing. At my request she gave me some tongue depressor sticks for him to play with (he likes those and imagines that they are all kinds of different things), which brought a few seconds of less screaming so she could take my blood pressure and stuff, but my poor Boy at this point was likely also in need of a nap as it had now been nearly 3 hours since we’d left my house and I think he was just beyond comforting so he continued with his freakout. Other workers in the office heard him screaming beyond the closed door and tried to help, bringing papers and crayons and they were so sweet to us, but the Boy could only be placated for a few moments before he remembered that he was very upset and would go back to his freakout. It was really bad, and all the Mommy Magic in the world was powerless to calm my poor little guy, “tough mom” had no effect either but not for lack of trying, he just wanted to get OUT OUT OUT of there, NOW NOW NOW!

I had REALLY needed to TALK to the doctor about what has been going on with me, but it proved impossible, I tried to mention what I could think of relating to some of the weird problems I’ve been having but the Boy was a distraction to us both, and also, they had just implemented a new computer system which was giving trouble at the time (the computer issues also kept her from seeing my full records).

I was told that my skin irritation (itchy blisters and rashes) is likely because the Doxycycline (which I am on to kill both the Lyme and Ehrlichia bacterial infections) has made me extremely sensitive to sunlight, and while that would explain the problems on the side of my face and neck which my hat does not shade and also on my forearms, it does not explain the problems with the skin on my chest, back, legs and the bottoms of my feet which have not been exposed to direct sunlight, nor does it explain the non-itchy “spots” that I have on my chest, belly and back, and aside from being advised to take Benadryl (which I have been taking a LOT of but it has not helped much), there were no new ideas for relief (and I unfortunately have cuts all over me now because when I am asleep or not conscious of what i am doing, I have scratched those areas bloody).

Due to The Boy’s major meltdown, I was unable to bring up a lot of things, such as the daily hours at a time that I spend with extreme nausea, dry heaves, and sometimes vomiting, that I suffer with for a solid three hours after my morning and evening meds (and at random times during the day for no apparently reason at all), or the dizziness and fainting I’ve had, or the severe bone pain attacks (far worse than the usual nasty pain that I live with) that happen in my right leg and are also accompanied by weird twitching of that limb and my poor foot (it is almost like that one part of me is having seizures or something). So the appointment was a wash, and I am to continue with the present treatment and return there in six weeks for follow-up (which reminds me, I have to call to schedule that appointment because we did not make it while I was there thanks to The Boy’s big freakout).

I am very upset by how badly the appointment went because I really do need to discuss the weird issues that I am having to see if there is anything that can be done to help any of it or if it may be indicative of the presence of another tick borne infection, I wonder if it would be possible to arrange a telephone consultation to discuss these things? I will ask when I call them on Monday to schedule the next appointment.

Once we left, the Boy was happy again, and he slept for much of the long ride home. All of the driving and stress took a lot out of me, so when we got home I was a “bad mom” and let my Boy tear up the house while I lay down for a while, until it was time for my daughter,  The Little Girl Resister, to come home from school. The kids were in rare form yesterday, fighting with eachother over everything or joining forces to tear up the place, run around like loud maniacs and otherwise drive me crazy, and my husband had a side job to work on out in the garage so I was mostly on my own with them while feeling like crap until husband came to the rescue and, as Daddy The Enforcer, finally got them to go to bed and stay in bed, at which point I was just too hurty and tired to be much good to anyone.

So that’s what happened. Today I am very sore all over, and I have a nasty and painful bruise where I had gotten slammed by that door on my hip bone, but the good news is that the weird thing in my neck is better (thank God).

I do have a some good news for everyone:

Our friend Tom Mannis has just gotten a new job! Congratulations, Tom! May this be the beginning of a bright new future for him. Now as you all know, a new employee generally has to wait a bit for that first paycheck, and Tom has been struggling for quite some time before he landed this job, so if you are able to, please Hit His Tip Jar to help Tom speed the transition to getting back on his feet and make his life a little easier as he begins his new exciting journey. Even if you can only give a dollar or two, it will help Tom cover bus fare to get to his new job and to buy food – we don’t want our friend to have to start working on an empty tummy, do we? Please give Tom whatever you can, he is a very good man, a loyal friend, a great blogger and a true Patriot.

In other good news, my beloved husband has been offered a better paying job than the one he has now and he will begin working there within a few weeks! I am so very proud of him, not just for landing the new job, but also for getting up at 5am every single day for the past 2 1/2 years to work long hours in a hot, dirty, physically demanding job and then also doing whatever work he could find on the side and trying to get a home business off the ground, all the while being a terrific husband and wonderful father without complaint. Hopefully this will help us to get back on our feet, or at least keep from falling any deeper in the hole, and that his new job will be more pleasant for him than the place where he has spent the last few years. It is going to take a while for us to improve our situation and catch up to where we were before the economy went off a cliff and took us with it; I still need help to cover my medical expenses and I really need new eyeglasses as my prescription is years out of date (eye care is one of the many things I have had to go without since we fell out of the middle class) and because my eyes are now so sensitive to light, if I could get shaded lenses it would really make a huge difference and give me back a little bit of my life, so if you are able to help a blogger out, it would really mean a lot to me and my family.

Thank you to everyone who has been helping and praying for me and my family, it truly does mean the world to me! God bless you all.

 

Update II April 14, 2012 12:45 pm: My friend Paul is spearheading a new effort to try to help me, check it out HERE. Thank you, Paul!

 

This post is linked at An Ex-Con’s View. Thank you, Paul!

This post is linked at The Conservatory. Thanks, Dan!

Three Beers Later has a post about me HERE. Thank you, Richard!

This post is linked at The Impolite Canadian. Thanks, Max!

This post is linked in the online newspaper the brandootr Daily. Thanks, Brandon!

This post is linked at The Lonely Conservative. Thank you, Karen!

This post is linked at Conservative Hideout. Thanks, Matt!

This post is linked at Americans Stand With Israel. Thank you, Bee Sting!

This post is linked at The POH Diaries. Thanks, TWB!

This post is linked at Sentry Journal. Thank you, John!

This post is linked at Patriot’s Corner. Thanks, PatriotUSA!

This post is linked at Lady Liberty 1885. Thank you, Lady!

This post is linked (again) at Lady Liberty 1885. Thanks again, lady!

 

Tip Jar

Eternal Open Thread & Tipline

Official Zilla of the Resistance Troll Policy

Shop at my Amazon Bookstore

Shop at my Amazon Department Store

Buy Ad Space

Email Me: Zilla@MareZilla.com

 

17 Pingbacks/Trackbacks