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Resister Updates: Pain – UPDATED

***So after years of suffering with doctors unable to figure out what has been wrong with me or how to make it better, my dentist inadvertently found the missing piece of the puzzle and may have saved my life in doing so. Now I need to find a doctor who is willing and able to treat me and, as I look for one, I am learning that obtaining treatment is very expensive. My friends in the Conservative Blogosphere are helping to raise awareness of my situation in the hopes that with help from Tip Jar Hitters, I will be able to the medical care I will need in order to get better and reclaim my life. Story of how I got here below, scroll down for updates.***

Originally published March 9, 2012 – will be stickied and bumped when I get back to blogging again:

This is an update for everyone who has been following my health issues. I apologize in advance if this turns out to be a confusing mess, but the nightmare I am living is complicated, hard to explain, and I am trying to do this through excruciating pain which makes it hard to focus – but I want those of you who are interested to know what’s been going on with me, and I hope that if there someone is suffering something similar, that they may find something helpful in this post and maybe realize that they are not alone.

Past posts with information about my medical issues in reverse chronological order: HERE, HERE, HERE, and HERE.

Beginning in the first week of January and going throughout February, I had been given six rounds of four different antibiotic medications to no avail, the infection that started in my tooth which had spread into my ear and my sinuses would improve after a couple of days of treatment and then revert back to horrible within a day or two of  the course of completion of each course of antibiotics. I have dangerous reactions to many of the most widely used antibiotic medications so doctors are limited in what they can prescribe to me. There was one very strong antibiotic medication that i am known to be able to tolerate that my dentist said we could try as a last resort if the 6th round of antibiotics failed, which it did, so I was given a ten day treatment with Levaquin that finally got the raging infection in my head under control. I finished that course about a week and a half ago and tomorrow I go back to the dentist to get something permanent put over that tooth, most likely we will try a simple filling because I can’t afford any of the other options right now (I don’t even know how I am going to pay for tomorrow’s appointment) and it is still possible that I’ll lose the tooth and the bridge it holds up some time in the future – but right now I don’t care, I just want the temporary filling replaced with something stronger before I get infected again. But a funny thing happened during all of this…

As I have explained before, I suffer from chronic pain due to nerve damage from injuries, ruptured discs and something else that has been misdiagnosed as a bunch of different things and that has plagued me for years. I have lived with most of these things for well over a decade, especially the problems with my hands, but the past few years and increasing especially in the past year, there have been new, painful, and frightening symptoms which have seriously messed up my life. I spend the first few hours of every day so crippled up from back pain that it is difficult to stand up straight, hard to walk, and just exhausting – sometimes these problems clear up after I’ve been up for a while, sometimes they don’t and I lose entire days of my life to pain and misery and am unable to do much of anything. Since last fall I have also been running low grade fevers and getting chills, on and off, throughout the day, every damned day. It has been hell.

I noticed that while I was on the various antibiotics I had to take this year for the infection in my head that within a few days of starting each treatment, my fevers and chills would stop and, for the first time in years, I would get some relief from the debilitating pain in my back and my bones, but within a few days of completing each course of antibiotics, I would be back to my usual misery, and sometimes even worse than before.

During the last round of antibiotics, with the ‘last resort’ medication Levaquin, for the first time in nearly 2 years, I actually felt much better; I still had the pain in my hands and feet that I will probably alsways have, but I had several glorious days when I woke up NOT feeling as if I had been hit by a train, I could stand up straight and walk with ease, and I wasn’t so freaking tired – I was actually able to get some things done around here and play more with my kids, I felt ALIVE! Sadly (and I daresay, predictably), a few days after completing that course of treatment, while my dental/sinus/ear infection were finally better, my body pain and exhaustion returned with a vengeance and has worsened with every passing day. So here I am now, with pain so bad that it has had me in tears on and off for two solid days (no, my pain does not normally make me cry but this time it is indescribably bad, scary and so damned frustrating), and depression from it all is really kicking my ass. But the temporary reprieve from the agony seemed to me an important clue to the mystery that torments me, so I brought it up the other day when I went to the pain management doctor.

I have been getting treated at this pain management facility for about a year; I had previously gone to orthopedics and then neurologists before I found this place. The first doctor I saw there said I had Fibromyalgia, but the more I researched it, the less I seemed to fit that particular bill, and she put me on new medications that made me so ill that I lost 40 pounds in 2 weeks. She also refused to give me anything for breakthrough pain as she was convinced that her idea was the solution and she become indignant when I questioned it and then she transferred my case to another practitioner in the facility.  The next person to treat me there was a registered nurse, and she actually listened to me, and she gave me actual medication for the pain instead of attempting to put me on things such as anti-seizure medication (I do not have seizures) like the other doctors had done, she read my chart and noticed that I had been infected with Lyme disease from tick bites on at least three separate occasions (I live in one of the top 3 highest concentrations of Lyme Disease in the world), she suggested that my bone pain could be due to arthritis caused by Lyme Disease but all she could do was adjust dosages of the pain medications and keep me on what was called “maintenence” which means I get the same pain meds every month that take keep some of the edge off of the pain so I can at least get out of bed every day but there was nothing that could actually make me not be in chronic pain every single day of my life with some days being far worse than others.  This last practitioner left the facility recently and I was assigned to a new doctor (an MD) who had just begun working there. Our first meeting was just to review what they had done so far and write the same scripts, then it was 3 months of “quick visits” where they simply give refill scripts for the meds, until this past week when I had a full consultation appointment with him.

So the other day I told the new doctor about the strange thing which had happened to me while on the antibiotics for an unrelated issue. I also made sure to mention that I had been repeatedly infected with Lyme Disease. To my surprise, he did not look surprised, and he explained to me that there are different variants of Late Stage Lyme Disease, some of which respond to oral or IV antibiotics and some which don’t. He told me that the testing for it is very expensive and not covered by insurance but even then tests aren’t 100% accurate anyway so doctors like him go with the “if it looks like a duck, walks like a duck…” method for diagnosing such things and that my accidental temporary reprieve from the pain with antibiotics was a huge and useful clue. I explained how badly I was feeling since stopping the antibiotics and asked if he could provide more but he said that it is dangerous to keep taking them after I have already been on so many in such a short time and also that because I have such weird reactions to so many medications (and dangerous food allergies as well) that he needed time to do some research to try to find an treatment that might be helpful to me. He will see me again for a consultation in one month and until then, all I have is my regular pain meds which are not particularly helpful right now.

I am sure that my current flare up will ease at some point, and I am happy that I finally found a doctor who seems to understand (he had previously worked for 20 years on Long Island’s East End where Lyme Disease is also prevalent so he has experience with it) but it sucks that I cannot be given any treatment for it right now and it is very depressing to have had a taste of what “better” feels like and knowing that it’s not something I will be able to get hold of again in the immediate future. So that’s what’s going on with me, I am hurting badly, very tired, and more than a little bit depressed and frustrated. Hopefully the dentist appointment goes well tomorrow and is not too expensive, I wonder if I can convince the dentist to give me antibiotics again so I can get a few more days of feeling like a real person just one more time? I doubt it, but it would sure be nice as I hate feeling like this and my husband and children deserve so much better than the miserable, sad, me that they are stuck with right now (although I try my best to smile through it all when I think they are looking, it gets harder every day to do and there is so much that they are all missing out of because I just can’t do much) and I feel like I am failing them.

If I haven’t bored you away yet, thank you for reading, any prayers you could offer up for me and my family would be greatly appreciated. Hopefully the current flare up will ease a little soon so I can at least get you all some new blog posts you might enjoy reading, but be sure to check my Twitter feed and the A-C page for news info as I do try to post a little bit to those places daily no matter how badly I feel, you can also find lots of great stuff in the blogroll in the left-hand margin of this blog.

 

Update March 10, 2012 6:30 am:  Thank you to everyone who has been sending prayers and offering kind words of encouragement, they mean the world to me!

Thank you to those of you who kindly hit my tip jar, I truly appreciate it and feel better knowing that I will be able to give the dentist something towards my bill when I go there this morning to (hopefully) have them finish up the work on that one bad tooth!

As much as I hated going through the dental/sinus hell, it turns out that the whole nightmare was a blessing in disguise as the accidental improvement of my body pain while taking antibiotics for the infection in my head led to having a doctor finally understand what has been wrong with me for all of this time.

Mysterious ways…

 

UPDATE II March 10, 2012 11:00 pm:

Last night my tooth began bothering me and when the dentist started poking around up there this morning, it hurt a lot. The infection up there is back again, but luckily not back up in my sinus yet. The dentist prescribed an antibiotic rinse and then when I asked him if he would write me a script knowing how sick I have gotten from this thing already, he kindly agree and even gave e a refill for “just in case”. The prescription is for the Levaquin that had the unexpected effect of making my years long body pain gt better for the first time ever and it is a medication that is recognized as a treatment for Late Stage Lyme Disease. I am hoping that I will be feeling better within a few days and even if it is only a temporary reprieve, at least I will have a chance to be productive for a bit and this also buys me a little bit more time as I search for a doctor who will be willing and able tot treat me so I can get better.

I have been doing research and have learned that many doctors who specialize in treatment of Late Stage Lyme operate on a cash only business to avoid some of the nasty red tape and big nanny state fuckery which becomes a barrier to the doctors ability to do right by his or her patients. And they don’t come cheap – one doctor I called requires a $1500 payment JUST for the initial consult, and requires a five hundred dollar security deposit just to be able to make the appointment! It is obvious that he is not a doctor I can afford to see but I am hoping I can find one who can see me and is willing to treat me without costing a ton of money. I am learning that people with this late stage Lyme have to pay a LOT of money for testing and treatment. Any money I can scrape together towards my health issues is going to be money that would otherwise be used to pay for food and our utility bills here, so I could really use some help. You will be helping to save my life and give back to my family the mom & wife that they deserve.

My friends in the Conservative Blogosphere are rallying on my behalf and I am so touched by it that I barely have words to express how much it means to me. Tom Mannis at Chicago News Bench came up with the idea of a fundraiser to help get me well and save my life. The guys at Waznmenttobe, Whoopie & Buffoon, came up with a cool widget for me that you will be seeing in the side bars at some of the best blogs around. Paul Lemmen of An Ex-Con’s View was also  instrumental in making this happen. I am deeply humbled to get so much love from so many people, words fail to describe the depths of my gratitude. Thanks, everybody, and thank you to everyone who is putting up the Zilla-Aid widget and of course, a huge thank you to the kind people who have or will hit the tip jar.

 

I need to go to bed now, it has been a long and exhausting day. I will continue to post updates as things progress. Thanks again for all of your support and God bless you all.

 

Update III March 12, 2012 9:00 pm:

I am still in a lot of pain, but it seems to be getting a little bit better since I started the antibiotics again that were given to me by my wonderful dentist. The outpouring of kindness from friends and strangers alike is amazing, thank you all so very much!

Will Profit at Capitalist Preservation posted an email from me (with my permission) that explains some of the things I have learned as I have been doing research and trying to find treatment that will hopefully keep me from getting any worse and ideally help me to get better and give me back my life. Excerpts below:

I need to find what they call a Lyme Literate doctor (LLMD) but because of the nanny-state’s interference, most of the Lyme specialists operate on a cash only basis and it is very expensive – one doctor I called charges $1500 just for the initial consult visit and requires a $500 deposit just to even make the appointment! Obviously that is out of my league and I am not willing to drop that kind of money on a doctor that I have not even met before I know if he can even help me, so I will spend the coming weekdays calling around to see if I can find a regular doctor who understands this disease and is willing to help me to fight it. The fact that I respond to oral antibiotics is a great blessing because a lot of people with this disease do not and they end up having to endure months of IV antibiotics, sometimes pumped directly into their hearts! It is “controversial” to give a patient long term courses of antibiotics because the side effects include killing the “good” bacteria in the body and puts people at risk of serious problems, and also, people are afraid of creating resistant bacteria and triggering a zombie apocalypse. Hopefully I can find a doctor who will be able to help me not only get the treatment I need but also to prevent some of the scary stuff such treatment may put me at risk for, and of course, be prepared to avoid triggering a zombie apocalypse.
Lyme Literate doctors are not generally open about what they do because big nanny state puts a lot of them under investigation and at risk of losing their medical licenses so there is actually a Lyme Disease ‘underground’ that involves privately contacting people who may know a doctor who can help just to find treatment. People getting treated are urged not to publish the names of their doctor or any contact information because it can put the doctors at risk. How messed up is that? I suspect it will worsen under Obamacare and will not just effect Lyme doctors; anyone who deviates from big-nanny approved methods will be targeted – there are already a growing number of doctors in many different fields who no longer accept insurance and operate as cash only so they have less hoops to jump through in order to properly care for their patients.   MORE HERE

There will likely be more doctors in many different fields going “off the grid” as Obamacare draws near and the noose of bureaucratic micromanaging tightens on healthcare providers who fail to do what they are told by a panel of pencil pushers rather than do what is best for their patients. When I am feeling a little better, I plan to do some investigative blogging about this phenomenon.

Thank you again to everyone who is helping, linking and praying for me, God bless you, I love you all.

 

Update IV March 16, 2012 11:35 am:

I am sorry that I have not been back here sooner to update the post, linkback & thank those who’ve linked to this post and also that I have fallen behind on responding to emails. I have been very sick with what is called a Herxheimer Reaction from the antibiotic treatment which means that as the medicine starts to kill the Lyme bacteria, the dying bacteria poison the body with neurotoxins as a parting “FU” to the host victim, and it triggers a big bad immune system response. I have been in a lot of pain, dizzy, tired, and very nauseous, while also suffering the worst chills that I have ever experienced. The sickness is apparently a sign that the medicine is starting to work and this new misery should be temporary.

I have found a specialist who is widely considered to be one of the leading experts in research and treatment for Late Stage Lyme Disease; his office is just under an hour away from my home and thanks to the kindness of people who have hit my tip jar, I was able to become his new patient and had my first appointment with him this past Tuesday. They took lots of blood so that they can look for co-infections and I have a huge bruise from it inside my left arm but the bruise is getting less ugly every day. They will call me some time during next week to discuss my test results and to follow up with how I am responding to the current antibiotics (that I had gotten from my dentist for the tooth/sinus thing which happens to be a drug that is effective against Lyme Disease) to see if I should continue with the present medication or if it needs to be adjusted or changed. My next appointment with them is in one month from the initial visit on Tuesday. I will likely be on some antibiotic or other for at least the next six months, and probably much longer. If I am lucky, I will turn out to be a person who responds well to just oral antibiotics, otherwise I might need the IV kind, which is shockingly expensive (so far so good though, my accidental improvement on the dentist’s antibiotics is a good sign that I might be able to avoid the IV ones).

Due to the fact that I have been laid up for so long already and cannot predict how long until I am more functional again, I have asked my good and trusted friend Corbinian Lash to keep my A-C page on facebook alive, and he has been doing a wonderful job, he has also agreed to sign on as a co-blogger here, which I think readers of this blog will enjoy.

I will try to get back to blogging about something other than my health as soon as possible. Thank you for your patience and thank you all for your kindness, encouragement, prayers, and support. I love you all. God bless you.

PS: If you’d like to add a Zilla-Aid-Athon widget to your blog to help me to be able to fund my medical care, please visit Chicago News Bench where my friend Tom Mannis has the html codes you will need in a variety of sizes!

 

Update V March 17, 2012 10:20 am:

In the comments section of this post, pjMom told me about the documentary film Under Our Skin which is about how very dangerous this disease is, why it is so difficult to get appropriate and life saving treatment for it, and the political witch hunt that targets doctors who risk everything to help their patients and save their lives. i have embedded it in a new post here at the blog, please watch it.

 

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