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Medical Nightmare Updates

Well the good news is that I do not appear to be effected by that “ticks make you allergic to meat (and make you want to buy Apple computer products)” thing that has generated a lot of hysteria in the media, and the other bit of good news is that I’m not mad at Smitty for poking fun at said hysteria even though a commenter had implied to Smitty that his jokes were in poor taste considering that I am seriously ill due to multiple debilitating tick borne diseases. I was given the opportunity in the comments section to educate some people about how my body has been ravaged by these diseases and (when asked) I was able to leave some helpful info about the importance of early diagnosis and treatment to help keep people from ending up sick & crippled like me, I was even able to provide a link to a post that hardly anyone has read thus far which explains why it is so difficult to get the proper diagnosis and treatment which can save a person’s life (and why Obamacare threatens to make obtaining that life saving care impossible).

The bad news is that I’m as sick as ever and, since Wednesday morning, deaf my right ear. I’ve been meaning to do a medical update post for a week or two now, but I am just so screwed up that every time I try to start I just end up going back to bed, but nice people keep asking what’s going on with my health so I will try to get through this as best I can – please forgive typos and whatever may seem nonsensical as I am basically existing as a broken shell of the person that I used to be at this point.

The last time I wrote about my medical nightmare was shortly after I’d learned that I also have Babesia in addition to the late stage advanced Lyme Disease, Ehrlichia/Anaplasmosis and a systemic fugal infection. The specialist’s office put me on an anti-Malarial drug called Mepron and changed the antibiotic I’d been taking, suggesting that they might add it back in addition to the new one if necessary in the future, this is in addition to plethora of other medications I am on to fight the other types of pathogens and to help take the edge off of my most miserable symptoms (the worst being indescribable pain from deep inside my bones, likely due to my bone marrow being infected, and that damned painful itchy rash of blisters on the sides of my face, neck, chest, and back, along with the all over body ache and crippling pain in my lower back that makes it hard to stand and walk). A few days after the change in meds, I started to enjoy a couple of days of feeling kind of better, I didn’t hurt quite as much, that miserable itchy blisters were finally starting to clear up, I was less tired, and I even almost felt optimistic that maybe we were finally making some progress in getting some of this mess under control – but it didn’t last.

A little over 2 weeks ago, I found myself dragged into a bunch of ugly blog drama that upset me a lot more than it probably would have if I weren’t so sick, and at the same time, my pain symptoms started to flare (especially the bone pain, which I hate more than anything because there is not a damned thing that can be done when it’s bad, it’s not exactly something you can put a heating pad or an ice pack on) and then a new thing happened; I broke out in hives all over my body (this was different from the blister rash that is mostly confined to the aforementioned areas) and I started having trouble breathing. I called the doctor and he said he thought I may be having a delayed bad reaction to the Mepron, which is a thick gloppy yellow liquid that has citrus flavor added to it to cover its vile taste (and I happen to heave a dangerous food allergy to oranges and some other similar citrus fruits, but I don’t know if it’s related); he suggested that we cut back the dose to see if that would reduce the bad reaction instead of stopping it completely because if we stopped it, my body would decide that I was fully allergic and I could never use it again (at least that is my understanding of the conversation, but my memory is very bad these days so I may not have it exactly right). The reaction did calm down, but the regular symptoms flared with a vengeance and have nto quieted down since and my wild fluctuations in body temperature (going back and forth from 97 degrees to over 101 degrees repeatedly over the course of each day in a nasty cycle of feeling painful chills and uncomfortable hotness) which had started to ease up along with the other stuff also came back, much to my annoyance. Then last week, my stupid bad tooth that they never put a permanent seal over because I have been too ill to deal with the oral surgeon and there’s nobody to watch my kids when his office is open anyway, started acting up again and the inflammation quickly spread to my sinuses and my right ear, and then the gland in my neck on the right side swelled up to about the size of a baseball, which made it very painful to eat or drink anything at all, and finally, whatever the hell the new infection is reached my lungs and I have had a deep cough ever since. My doctor added back the other antibiotic so now I am taking two at the same time in addition to everything else, and my cough and sinuses seem to be improving, and the neck gland is down some (but still pretty bad) but since I woke up on the morning of July 4th, I cannot hear anything with my right ear and it feels all blocked up and it still hurts. I am tired beyond words an just feel  horrible all the time. It’s demoralizing, depressing and exhausting.

I’m sick of being sick and in pain and I hate that I have lost so much of who I am to these diseases, both publicly and privately. I hate being known as the sick blogger who has to beg for help (and I sorely miss being known as being a good researcher and writer), but until I can get this stuff at least a little bit under control I can’t do much else and if I give up now then I’ll never get better, but I am again looking at the possibility of having to abandon the fight because each 100 mile round trip to the specialist and the costs involved with that and the (such as the gas for the trip, the appointment itself and the meds) comes at the expense of some other thing this family needs and we are still teetering on the edge of disaster ever since the economy tanked and the price of every day necessities shot up while our income did not even come close to keeping pace with the increased costs of living. I hate that I am so weak that I can’t do much around the house or take the kids to do fun stuff, I hate that I struggle just to pull open the refrigerator door to get something out of there and that I need someone else to open bottles and jars for me, even simple plastic caps. I hate getting totally wiped out just from going down the street to the grocery store and needing the shopping cart to hold me up when I am there. I hate being a burden and wish I could give a positive answer when nice people ask if I’ve gotten any better. I hate the feeling of hopelessness that I might be one of the 20% of people afflicted with these diseases who NEVER get any better and that I might linger on like this for the rest of my life, and I hate the freaking panic attacks I get when I wonder how I am going to pay for stuff that either I need for my medical care or that my family needs. I hate that I will be 40 years old in less than two weeks and I feel like I am a hundred and ten. I miss having a clear head and being able to remember stuff that happened five minutes ago and being able to focus on something for more than a few minutes before feeling like I need a nap. I am probably repeating myself but I have no inclination to proofread this right now so I’ll just blame the brainfog and be done with it. I wish there were a faster way to kill all the stuff that’s killing me, like strap me to a bed, shoot me up full of cootie killing stuff and then send me home better, but that doesn’t exist  in reality with these diseases, it can take months or even years to feel better, but the light at the end of the tunnel says that people who tough it out through the treatments DO get better – I hope I can count myself among them some day, but i can’t get there from here without help.

I go back to the specialist this Sunday, yes, my doctor actually has Sunday hours because they have patients who require daily IV infusions of meds, so the are actually even open on holidays. I could really use some help if you can spare it, but I also appreciate any kind thoughts or prayers that may find their way to me as well because I need all the help I can get if I am to ever get on the other side of this thing and hopefully find myself waiting there for me. Right now I am just lost, and feeling like I am losing because I am so beaten down.

Sorry to be such a downer, if you remember the person I was before these diseases took over my life and would like to see her again, please consider hitting the tip jar to help me get her back before she’s too far gone. I really want to get back to blogging about not this.

There is a little good news that I can share: I will be a guest on DaTechGuy’s radio show on Saturday July 7 in the 10am hour – if you’re in New England, tune in to AM 830 WCRN, listeners can call in to the show by dialing: 1-888-9-FEDORA. I’ll update when I have more info for how you can access it online if you’re not in the broadcast area.

I think the above pretty much covers everything about what’s been going on with my medical hell, although I wouldn’t be surprised if I left something out. Hopefully the additional antibiotic will continue to kill the stuff that’s killing me and I can find the presence of mind to blog about stuff that people might actually want to read and/or link to, but until then, here I am, and I am thankful to any of you who have gotten through this whole post with me. God bless you, and I love you all.

Please keep me in your thoughts and prayers, and if you are able to, please hit the tip jar to help me fight this thing and keep the wolves away from the door for a little longer. Thank you.

 

Update – July 7, 2012 7:55 AM:
I have mentioned before how just a short drive down the road to run a simple errand drains the life out of me, one thing I did not mention when I put this miserable post together last night is that my little family had an unplanned adventure yesterday. Husband called me from his cell to tell me that he’d had a blowout of one of his car’s tires on the way home from work and was stranded on the side of the road some 20 or 30 miles away. His tools (such as the jack that he needed) happened to be in my car from back during those nine long months when he needed to use it while his vehicle was down from a bad transmission, and I needed to load up the kids in the car and drive down to the place where he was stranded and waiting. So I packed up the kids and drove; it felt like it took forever to get there and my right leg was screaming the whole way. I am not familiar with the area he’d broken down in so it took a while to find him but eventually we did. His tools were stashed under my back seat, so we had to take out the children and their car seats so he could get at them and the kids had to join their car seats on the side of the road while we did this. Then hubby discovered that his little “donut” spare tire needed air so I was sent on a mission to get that taken care of while he and the kids waited on the roadside. I was nervous because I don’t know that area at all but I did finally find a gas station and a nice young man helped me out with the little tire so back I went to my husband and my babies. Once hubby’s car was ready it was time to put my car back together, complete with car seats and kids, and follow him on the long ride back home, with my leg and back screaming the entire way – it was really bad. Thankfully, the children were good sports and didn’t even complain about how hot it was on the car (we have no A-C), and they seemed to be happy just for the change of scenery (we do live in a very pretty area so there was all kinds of neat stuff for them to look at outside their windows). But the adventure really beat the hell out of me and last night was rough, however, this morning is far worse. My right leg and lower back are on fire and my whole body feels as if it has been hit and dragged behind a freight train. This does not help my moodiness at all, but hopefully it will ease up before I have to make the 100 mile round trip drive to my specialist on Sunday. Please wish me luck, I am going to need it. Here’s some metal that about sums up where I’m at right now, “I’m Broken” by Pantera:

 

 

This post is linked at The Conservatory. Thank you, Dan!

This post is linked at ACT! for America Houston, who honors me by remembering that I used to be a good blogger. Thanks, AFAH!

This post is included in Larwyn’s Linx at Doug Ross. Thank you, Doug!

This post is linked at That Mr. G Guy’s Blog. Thanks, Mike!

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

 

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