Saturday, December 28, 2013

Holidays and "The Time of the Doctor"

I hope you all had a wonderful holiday. For those of you who left your dwelling and stay with friends or family, were you able to stick to the diet? It is incredibly hard when there is gluten, dairy and sugar everywhere you look. 

My family was nice enough to make me a Christmas dinner that was gluten free, but they just don't understand how difficult it is passing real rolls and smelling that deliciousness. I have never tried crack or heroin or anything of the like, but I call real bread crack. It is so hard for me to be good and stick to a diet that makes me feel better. I stayed for 3 nights. I hardly slept and I felt like crap. Thankfully, my parents cable package comes with BBC America. I was able to spend the entire day on the 26th entranced by the drama that is the 10th Doctor. It is my safe place. 

I know I am really letting my nerd flag fly at the moment, but let me share with you the importance of the Doctor in my world. 

Four years ago, I had just gone through an extremely hard breakup. I was bedridden. I had been misdiagnosed by Mayo Clinic up in Rochester. I was told I had Fibro and unexplained chronic migraines and involuntary movements. I was also told by the doctor in charge of my case never to ask about Lyme again because I didn't have as evident by my negative ELISA test. Bullcrap. All of it. Nearly 2 decades after infection and they did an ELISA only. Anyway, I signed up for a trial of Netflix. A friend of mine from college had moved to CA and was attending San Diego ComicCon and was cos-playing as some character from this British show, "Doctor Who", she wouldn't shut up about on Facebook. I thought, "What the hell; I will watch an episode and see if I can understand her obsession." Six hours and six episodes later I was also obsessed. 

(Don't worry. This entire post isn't a comment on my obsession.)

What I learned, was that I could stay in bed and feel sorry for myself or I could enjoy something even if I was stuck in bed. I could dramatically dissect the character arcs and attempt to use my brain and degree again. (I have a Bachelor of Arts in Drama, and half of one in Spanish) As my eyes were failing to read well and my hand were failing to type or write or hold a book, my only option was to watch. Going to shows around town was too costly both financially and physically.

What the Doctor taught me, and continues to teach me, is beyond what I could achieve on my own at this stage of my life and my illness. The Doctor sees the best in people. I often see the worst. Though not sure why, this is one of my worst qualities and one I constantly work against. My LLMD says as my brain heals, this symptom will disappear. It better leave soon; I am really tired of this. The Doctor reminds me of the best parts of humanity. A group which at large usually annoys me to no end. I often get mad at my closest friends. I often hate them. The hate isn't justified. It simply shows up and disappears. Sometimes I describe my friends as the ones I hate the least. While that is true, especially during times when I have failed to properly detox, I honestly love them. I eagerly await the the PICC line and (probably hard times of) starting antibiotic treatment again. 

And once again, my brain has wandered. So in the end, I have finally found my thesis once more. Here it is: 
Whether you find your humanity in a show about an alien or God or quantum physics or music, find it and hold it dearly. Some days, without a Doctor binge, I would not have the ability to act in any humane way towards others. It is my safe place. My baby blanket. It is the thing that allows me to cry (not only cry but laugh and smile) simply as a human and not as a human in unexplainable pain. It cleanses beyond belief. 

Now I know that not everyone will find that in SciFi, or more specifically an alien mad man with a box for a spaceship who befriends and constantly saves the human race from other alien threats, but wherever you find yourself and your heart, follow it and embrace it. 

We have plenty to worry about, we won't be without pain for an unknown time, give yourself something that temporarily makes you forget. 

Wednesday, November 20, 2013

Every year. Every year I think, surprised, "Gosh, this past October, and for that matter, this November, have been really, really bad". Somehow, I forget. This year was 6 full trips to the ER and one half trip. By that I mean, we left because they didn't think I was high priority. 

I am still fighting. I am very much weaker than I have ever been. I spend most hours of the day dragging myself from the bed to the couch and back again. Oh, and also trying to feed myself food and pills. 

This month (use this term loosely, consider it from the time I last posted) my medicaid and food stamps came up for review. For those counting it's been since April since I had to fight the last battle for them. It just seems so incredibly stupid to waste man-hours on sending out notices, (me jumping through hoops again, and) hours spent on the phone talking to me when everyone did all this within the calendar year. 

Yeah, I know, some people cheat the system, but I am not one of them. Most of us aren't. Getting that dreaded state social services envelope in the mailbox now sends me in to a full panic attack. I never know if I can convince this new person that I need this help to survive. In the meantime, I put more strain on the system by going to the ER, because I am unable to take care of myself health-wise in order to meet the seeming random re-evaluations. But I don't get a choice. I have to make sure I have medicaid and food, before I can take care of myself. My self care takes such a toll on my mind, body, and spirit, that if I don't drop it to go through the requirements which often require a scavenger hunt and many breakdowns, I will die in treatment from starvation. God, even reading that statement to myself sounds so melodramatic, but I promise you it's not. At last count, my doctor told me I am 20 lbs underweight. That day I clocked in at 98. 
Today, my clothes are even bigger. 

I am still trying to nail down a decent medical team in the area. My specialist still wants me coming to see him every 2 months. I still haven't figured out how on earth to pay for that. If anyone has any brilliant ideas, please let me know. And while your at figure out that $200 every 8 weeks, if you can magically find another $200 a month for medicines, that'd be peachy. Thanks. 

I hope everyone is staying warm!


Sunday, October 27, 2013

(A clever title of which I cannot produce currently)

Much has happened since I last posted. I started the month of October determined to rid myself of my online/social media presence. I felt like it had begun to turn into an obsession. I suspended my Facebook account, deciding to return in November. Now, when someones human interactions are mostly online, that wasn't the wisest decision. I did succeed for the week though! I am not sure if it was systematic rage or just the pure frustration with a lack of real-in-person interaction. If you are familiar with the 5 languages of love, learning that my top 2 are tied, touch and quality time, will help explain my loneliness. I have many close friends that our only communication is Facebook. While I love them and cherish the time we "spend" together, I became increasingly frustrated at them for not being right next to be. I know it isn't rational. Thankfully, I stepped away for a bit in order to reset my brain before I did any damage to those relationships. On that note, if you live near me and want to hang out, please contact me. Do understand though that I will need you to show up exactly when you say. I am not well enough to handle flakiness after spending all day or week prepping my body to participate in a social activity. 

Well, during the time I was to be resetting, I started to have severe organ troubles. I was up to the full treatment on oral drugs, but it was shutting my system down. I could no longer eat. Even when I was hungry, my infected brain believed the food was rotten and wouldn't let me keep it down. I couldn't drink water. Like an infant gagging on new formula, I just couldn't get it in. So my upkeep of supplements like the probiotics (100 billion count) and sacchromyces boulardii (good yeast) and other things to boost my GI function and immune system simply failed to stay in. I was starving to death. I called my LLMD, he yanked me off of the antibiotics and said I was on track to renal failure. So I spend 4 or 5 nights in the ER simply hoping for an IV of fluids. Sometimes the doctors complied, others though told me I wasn't dehydrated and shouldn't use my wheelchair if I could walk no matter how high my fall risk, explaining that I have fibromyalgia and the worst thing for it is not walking. I wanted to smack him. What on earth do they treat in med school?! I think I would much rather have some muscle atrophy then continue to fall and break my bones. I told him I only use it when I know I will fall.... many bad words and anger to him. I am so sick of rude and ignorant doctors. 

On that note, when I can walk, I do. Sometimes 4 miles a day. I can't do it everyday. I cannot rely on my body to be consistent in that manner. 

Back to the bodily problems. I have lost so much weight, I hardly fit into my clothes. They slide right off. I am doing everything I can to stay in the triple digit range, but the last time I weighed in at 100 lbs. 

This weekend I was lucky enough to go to the James Area Fall Advance for Mary Kay. One of the gals in my unit had to miss, so I took her spot. However, by the time I left yesterday, my decline was suddenly no longer hiding in that secret spot I had stuffed it away within the depths of my awareness. I could hardly sit up for the afternoon classes. Having attended many of these events, I know that typically, they pump me up beyond the capabilities of anything else in my world. They are full of stories and lessons of how to be a better business operator, a happier, more emotionally healthy human being, and how to elevate oneself above the 'life suckers'. (You know the people who suck the energy out of you and have no ambition to change or grow themselves, but want to complain about the status quo.) 

So once again, I crossed the line of what my body could handle. I just so wanted to get to experiance all of it. I had to call my director (one of my best friends) and tell her I wouldn't make it to the rest of Advance that takes place today and that I am trying to learn where the line is and not cross it. Well, apparently, she watched me cross it yesterday and fully expected me to not come today. I am not sure how to process this. If she can see my line, why can't I? Why must I hit the wall before I realize, the line is far behind me? 

Now, I sit (well to be honest, it really isn't quite sitting) in bed with my laptop, while wishing desperately that I can get up and go to the rest of Advance. I have been told countless times, "mind over matter'' or something similar. If you know someone this sick, don't say that to them. I truly want nothing more than to go back to work full time. But at this point in my illness, it would actually kill me. My full time job is to obtain money for medication, and trick my body into eating and taking said meds, and orchestrating the progression of treatment, as in what specialist and when and how they will all work together and how on Earth I will be able to get a picc line AND convince my insurance to cover the IV antibiotics so my GI track won't die as I am trying with all my energy to save my brain (the pay sucks by the way; I don't recommend it.)

Right now. Right now I should be putting on makeup and leaving for the days activities. Self consultation is hard. There is only one thing I want today. Shoot, I would give up my football Sunday for it. I gave up my soccer Saturday for it yesterday.  (You should know that as a kid, my time was pretty equally split between sports, reading, and making art.) It is beyond any English term I know that describes difficultly to not partake in the essence of my soul. I am a hard worker. Maybe too hard. My LLMD was amazed I graduated with my BA with a good GPA and didn't drop dead right away. My hardness, my will to push one more step, will I believe save my life, but only if I learn which direction to step. I have to accept that "normal' work may not occur for a while, but my push, my hardness and fight must be in treatment. I would trade almost anything to not have to suffer though the toughness that is treatment. If you feel like helping me out and making me feel as though I have done some work, head over to my personal website place an order, all the profit will go to doctors or meds. 

PS I have no clue if any of this post makes logical sense. I am having some swelling in my brain, specifically my brain stem and the right hemisphere. This is making it very very hard to see the words I type. Please be understanding of spelling, and grammar errors as well as what I am guess is a very frayed thread of though through this update.  

Thursday, October 10, 2013

Enemies

Scholar Robert Wright (no relation) poses the theorem that when people find themselves in a zero-sum relationship, i.e. if one person gets what they want, the other necessarily will not, they become enemies.  War ensues as they fight over resources, territory, and perhaps their very lives.  Somewhere in the process of care-giving for my roommate, Erin, we became enemies.

I confess that I gave too much, too often.  I forgot to care for myself.  "Just get through this bout of symptoms," I thought, "and then I'll be able to rest."  But the symptoms kept coming, relentless and terrifying.  And I don't mean terrifying in just  the "this person might die in my arms" sense, but also the "heart-pounding, fearing for one's own safety" sense.  Hours slipped by in crisis that were often needed for self-care.  Relationships eroded into heartbreak with no time taken to grieve.  And still the violence of late-stage neurological infection assaulted us daily.  And I had no place to escape to.

Finally, the insistence upon space and time for self-care demanded that Erin and I no longer live together, and the war began.  For Erin would be much safer, and probably healthier, with around-the-clock medical attention.  But I am not a doctor, and even if I was she could not afford my or anyone else's constant supervision.  And care-giving without self-care yields diminishing returns.  Finally I had nothing left to give and Erin had no one else to receive help from.  We became threats to each other's very existence, and my attempts to seek space and care for myself put Erin in the jeopardy of isolation.  Things got nasty.  When the dust settled and we found ourselves living apart for the first time in over two years, our friendship was in tatters.

But then I had gained the perspective to note that Erin was not my true enemy.  Lyme disease was the enemy of both our lives and it must be fought.  I found the heart to keep fighting for Erin and the wisdom to also fight for myself.  Erin is still my dear, dear friend and no one has more heart than her.  She has been occupied by an invading army of bacteria, oppressed and devastated, but she refuses to surrender.  I have found my limit, the absolute extent to which I can fight alongside her without losing myself.  We are doing all we can and praying for more allies, because I know that Erin has much to give this world and we will all be better off with her still around.

 So if these words have found you and you are in a position to join us, please do.  You will find not a zero-sum relationship but a life-long ally.


Friday, September 20, 2013

Fundraising and my reality

It has sadly reached the point again, despite my best efforts, that I have to fundraise again. I hate this. I hate asking for money. I hate my life not being in my own hands. I would give anything to be able to work. Alas, I know that without doing this, I will never live to work again. That is not an over reaction. I am not being melodramatic. My doctor said last week if I can't get this together and endure treatment then that's it. This will undoubtedly kill me. 
So please, I, without exaggeration, am placing my fate in the hands of friends and strangers and hoping that somehow, together, we can pull this off. I want so badly to win this war. I promise, I will not disappoint. I have work and art and love to offer. It is bottling up inside of me, I just don't have the energy to fight for my life and also contribute. Not now anyway. 

There are two ways to give. One is to click on the GoFundMe link just below my picture on the right side of this page. The other is to click the fundraising tab above this entry. That tab has a PayPal button. Each one offers different ways to give. Each outline my financial situation. 

Just in case you want a visual of what it looks like when I am not in public, using every ounce of energy and will to not appear sick (which, by the way, takes more energy than you can ever imagine), take a look at the link to the "Under Our Skin". Please consider watching. It won many awards and was nominated for an Academy Award. Even if you don't believe everything in the film, pay attention to the patients. Every symptom you see is something I go through almost daily. Especially Mandy's symptoms. 

While I appreciate the compliments of how good I look, I am still very, very ill. And you see me with a ton of make up on. I know how to make myself look not sick, but when I go out, I have to prep my body for days. (God, I wish that was hyperbole.) And I am stuck on the bed, couch, or floor, depending on where I land, for several more days sometimes a whole week. 


Monday, September 9, 2013

Fight to Fight..Still

For Lymies and other chronically ill persons, it can be a beyond full time job just saying alive. And that is without considering fighting for food stamps, SSDI, SSI, Medicaid, Medicare, Rx coverage, and all the people who claim we owe them money without sending accurate statements/proof.

Tomorrow, I was supposed to travel many hours away for an LLMD appointment. However, due to many separate, but equally frustrating events, I was unable to obtain transportation for the entire way. I was also unable to get in touch with my doctor, whose nurse is out for the day. I had to get an answer to the pilot as to whether he would have to spend extra time and money to take me the second leg and then get me from the airfield to the doctor and back all in one day. Now for those of you with Lyme, especially late late stage, you can probably guess what I will say next. After attempting to get these questions answered and then find solutions to the arising of more problems, I was beginning to stress about whether or not I would even be able to do the travel and be coherent enough to communicate with my doctor. 

Thankfully, after spending from 8 am to 2 pm trying to get permission to have an over the phone appointment, I got an answer that, yes that is fine. 

AND, I am getting a weird claim from a company claiming that the US government has okay'ed them to bill me for 500 bucks. Claiming it has to do with back pay on my SSI. So after many (checking my phone...8 to deal with this issue and 7 calls and 3 emails to figure out the doctor appointment ) calls between this company and the local SS field office, I have been reassured by the office, that without a written bill to me and an official appeal to SSI, they cannot legally make me pay. I know this is going to come up again, but at least I know where I stand legally speaking. 

All while doing the normal things like showering for the first time in days, taking meds (eating and drinking painfully required) and getting my Monday injection. I also somehow managed to walk to the library to get some books on cd to put on my ipod for the flight/drive tomorrow if it was to occur. It is insanely hot outside. 

At least I know I don't HAVE to do anything until 20 min prior to my appointment over the phone(!) tomorrow afternoon. Now if I could only get my amygdala to stop freaking out and telling me that I am about to die, I could relax enough to make lunch and take those pills. 

And with that, I leave you with the hope that someday soon, I can hop on here and write about how much better I am doing. But in the meantime, I will rely on my favorite Doctor and the Ponds to help me calm down. 

Saturday, August 31, 2013

21 Day Fundraiser ($15 Awareness tees)

Real quick post. (But important.)

With the recent CDC announcement that their number of Lyme patients is underestimated by over 10 fold (putting the actual numbers over 300,000 in the US alone), I thought it might be nice to show people how common it truly is. Lymies, please consider declaring yourself the warrior you are! All proceeds go to help with my treatment. I will continue to do fundraisers after my treatment is done to help others cover the extreme costs of fighting for out lives against this horrible disease. 

Each of these is only $15. In order for me to get any money, 50 of each must be ordered in the next three weeks in order for me to qualify for assistance. Please help out not only me, but many others by spreading awareness. Thanks! Links to order are above each pic. 


Design Image




Design Image

Thursday, August 22, 2013

Surgery and recovery

About 7 weeks ago I had surgery to take out my gallbladder and to see if my appendix needed removed as well. Only the gb came out and I was told that a large amount of my abdominal pain is due to congestion of blood in my abdomen. For whatever reason, (most likely of which is blood and Bb filled cysts bursting), the blood just sits there and burns like someone put hot coals between my organs. When watching medical shows on TV and they show surgery there is always blood and I never thought, "blood must not be between the organs but simply in the veins, vessels, and capillaries." That is wrong. The surgery was supposed to help with the scream inducing pain that often caused me to imagine someone had sent a spear piercing through my abdomen. To a certain extent it did, but the widely located pain is still very much present, just the gb pain is gone. My LLMD said that I should expect recovery to take about 4 times as long as they (the surgeon and PCP) expected. They said one week for pain, two weeks before sweating (Midwest summers anyone?) and 6 before I was to lift more than 20 lbs. It was 3 weeks before I could sit up on my own. I spend a good part of that time in bed and when I needed out, sort of rolling and hoping my feet would land first. Fun. I also moved apartments. So packing and unpacking without breaking a sweat or lifting more than 20 lbs. Yeah, right.

I did my best. I had to move after all. I am not sure if that helped or hindered my recovery. Either way, I am still hurting. I feel like someone has put some sort of hook behind my abdominal wall and is just pulling outward. I still can't eat well. By well I mean more than one solid meal a day and even that is pushing it. It is surreal that I haven't updated in almost 2 months. I can barely recollect the time that has passed. I know most was horrible and I have lost weight. But...

I am up-to-date on my treatment protocol now. Still not killing the Lyme. Hitting the Babs, bart, and cysts first. It is hell. I stop breathing randomly. At last count 27 doses of various medicines a day, plus injections 3 times a week. Oy vey. Most of which require specific food to be absorbed or to be kept down. Even water is hard to swallow. I am doing my best to sleep, but failing miserably. I am just barely keeping out of "severely dehydrated" range. I don't feel hunger anymore. I just constantly have a pain. I hurts when eating, after eating and long after eating. 

So in summery, this sucks. I really didn't mean any of the above to appear or feel rant-like in the least. It is merely an accurate depiction of my status quo. 

Thursday, June 27, 2013

What a week!

I have pushed hard the last few days. I am up to my full dosage of Mepron. (Yuck.) Also, I managed to see two musicals in the last 4 days. Music, especially, live/loud is very difficult for me. You know when you go to a big scale concert and you can feel the beat on your chest/breastbone? It is like that, except for me, it feels like it pierces my chest and messes with my organs. It makes my squishy bits hurt. When that happens it becomes extra hard to keep tremors at bay. However, what is the point of fighting for my life if I don't have any living in the meantime? Also, being part of the theatre community, it is important to me to see my friends' work and catch up, no matter how briefly, after the shows. Huge shout out to the casts and crews of Rocky Horror and Death of Cupid! I love that I have talented friends. 

All of that on top of a very upset gallbladder, which is coming out Tuesday morning, has made for an extra painful week. Tuesday night had me crying in the fetal position for over an hour from the abdominal pain alone. Tuesday also brings the potential to have an appendectomy at the same time. My surgeon will be looking around a bit to see why my pain is so widespread in my abdomen. 

Because of the above, it has been extra difficult to eat solid foods. I am only getting about 1 solid meal a day. The rest is from juicing, and I continue to lose weight (not good). And to add to the difficulty of the situation, for Mepron (anti-malarial to kill the babesia) requires a fatty meal in order to be absorbed by the body. Angry gallbladder+fat= a hell of a lot more pain. Screaming out and crying to the universe sort of pain. It makes it hard to even drink water and I have become dehydrated and full of dead bugs I desperately need to get out. It is kind of a difficult thing. Take the meds to kill the bugs, but get too sick to deal with taking care of my body enough to keep from Herxing. 

At the same time, I have to deal with my usual symptoms. My hands and feet... suck. Deep bone pain. My skin burns with any touch. My neuro symptoms are just as exciting as ever! Yesterday, I had a few hours where I could only speak Spanish. I had years studying it and am mostly fluent, depending on symptoms of course. But, the same thing apparently goes for English. 

Saturday, June 22, 2013

The girl who cried Lyme (spoiler: it is still Lyme)

Sam and I were talking the other day about how hard and long this process is and how it feels like I have only just begun. I have been asking for outside help for about 9 months and I feel like, well, I feel guilty. 

I have zero reason to feel that way. I know that. I recognize that only through opening up and accepting vulnerability can I grow and fight this disease. I think maybe that part of the problem last year with disbelief over my situation in others began because I never told anybody just how much, how badly I was suffering. I hit rock bottom. Sometimes literally, passing out on the sidewalk or pretty much any other location while trying to convince myself that I was fine. I was normal. Everyone must hurt, nobody complains though so I wouldn't either. 

Aye, but there is the rub. Not everyone, in fact, most people don't have that kind of suffering. I didn't know that. Now, I'm not sharing this to complain about how bad I have it. I merely wanted to explain what happened. Like a mouse trap, you pull back and hook that metal piece storing the potential energy. That is what I am doing every single time I leave the house looking normal, acting normal, or really any activity. The problem is that before last year, I could control (for the most part) when the trap became triggered releasing the kinetic energy. I would go home, actually pass out, not just fall asleep and tremor, come to crying out in pain etc. 

There are a few options when it come to antibiotics that kill Lyme. One is doxycycline. So when I was working as hard as I could and spending the other 14 hours recuperating and resting to gear up for the next day, I was mostly getting by. But then I got a UTI. I was put on Doxy. I herxed*. I herxed so hard that it became impossible to hide my symptoms and I became more reliant on the people around me for basic things like cooking, cleaning, bathing, and assisting with the fear that came from the dementia. For the first time in my life, I was not only dealing internally with my poor health stealing things from me that I loved, but I couldn't hide it anymore. The trap was triggered and it came down hard. 

I can truly understand the argument of, "well, she was fine until..." or "she looks fine". I am working on figuring out a way to video document some of my worst symptoms. However, that is particularly hard to plan. These days, it is much harder to reset that trap. It takes so much energy to load that spring back. 

So here is where the title of the post comes in: I cried for help a year ago. People get busy. People forget. I do not begrudge them in the least for living their lives. I envy them occasionally, but that is beside the point. Metaphorically, about a year ago, I cried wolf again and again. Now his teeth are deep in my leg. I cannot move forward without help. And I need more help than I ever wanted to admit. I remain hopeful. I know that getting the money to not only provide treatment, but safe and comfortable housing throughout, I will beat this. I will return to health. At this point real health is a dream as I don't actually remember it. My goal is to go on a work trial period in about six months. That may or may not work as I hope, but regardless, it takes about $2,000 a month to keep me moving forward. Much of it I need to raise now in order to secure continued living under a roof and ensure that I can continue killing the bugs (you know how doctors always tell you to not stop the round of antibiotics until the bottle is gone- that's so they don't grow stronger and resistant).

That said, I know many of you have given and shared with your friends, but I am hoping and wishing and praying that crowd-funding will work. There has been a Facebook page created dedicated to updates on my health and the progress of my fundraising. It is called Erin's Army. You can find it here: http://www.facebook.com/ErinsArmy. I wanted my own personal page to be more than just Lyme updates because there is so much more to me than my illness. Please feel free to "like" and share, comment or whatever your heart leads you to do. Maybe there is another layer/ larger circle of individuals who will be willing do help. 



*Herx- imagine the worst flu you have every had, while also being drunk and hung over and are suffering due to a bar fight from the night before that you don't remember. Actually a medical term, short for Jarish-Herxheimer reaction, caused by the dying off of the bacterium. They poison the body after they die. This can cause serious problems with organs that normally rid the body of toxins. Neuro herxing can cause dementia like symptoms and severe tremors and severe mood swings and personality changes. 

Thursday, June 20, 2013

Please help me

I am still very overwhelmed. Pain, pain, pain, and need for more funding has me incredibly stressed. 

All week I have pondered ideas for this post. I fear that I am too stressed about my circumstances to be anything near cheerful or hopeful.

My physical pain has grown. Sometime next week I will be having surgery; the date/time will be set once all my doctors have discussed the issues my body has and an OR opens up. Nothing too serious, but my gallbladder and possibly my appendix will be coming out. That should really help with the daily pain. 

However, that should only relieve my abdominal pain. I will still have to push through the skeletal, muscle, and connective tissue pain. We shall see if it helps in the way of putting down food and meds and keeping them there. 

Pretty much my days this month have consisted of working my butt off to get the care I need. This amount of work actually makes me sicker, but without it then I don't see a healthy future. I FINALLY got my sauna. I will write more on that later, but for now, I will just say that I don't think I would be doing nearly as well as I am without it. Which is insane, because I am so not doing well. Daily, I feel like I might lose this fight or sometimes I feel I have already lost and it is just a matter of time until it actually kills me. Part of this is the never ending excruciating pain. It has made me angry and sad and desperate, with a very very short fuse. 

I finally have nurses coming 3 times a week to check on vitals and do injections. That took a month to get sorted. I *think* I have got my meds to the lowest possible price, but that being said, I dropped 300 bucks this week and still have more to buy. If you feel comfortable, please check out the Fundraiser tab at the top of the page or check out the widget for the GoFundMe site. The tab is connected to Paypal, the site is WePay. That way you have a choice of whichever one you're most comfortable with using. 

Sunday, June 9, 2013

Overwhelmed

There are so many happenings currently. It is definitely enough to exhaust a healthy person. Are you ready?

I got all the Rx's figured out. Because I am out of work and too young to qualify for a sustainable 'income' for SSDI, I think I fall somewhere around 300% below the poverty line. Yup. There is an eye opener, yeah? I qualified for low or no cost to me Rx medicine for most of my scripts. There are some that aren't in the assistance programs that I still have to pay for and of course the supplements to help keep my immune system going and my insides functioning aren't covered. This process has been wildly stressful. It took from the end of April and is still not completely finished. 

My friend is doing a Pampered Chef fundraiser to help pay for the meds. If you go here, and order. 25% of the sales will go directly to paying for my meds. This ends 6/12. So head over there now! :)

I started treatment (for real this time: co-infections before Lyme). Mepron is first. This is an anti-malarial. Babisia is essentially malaria, but it is in North America. And it is a bitch. Once I can handle Mepron twice a day, then I add Zithromax. I will continue until I am up to all the meds needed. But for now, I really need to focus on handling the Mepron. It looks like thick yellow paint that is almost at the end of its usable life. I used to do a fair amount of scenic painting. New paint is more.... the word escapes me... When a paint is about to go bad it gets almost chunky and 'paint boogers' start to form in the can. That is kind of what this med looks like, though mostly chucky; it is still a liquid and very yellow.

It is gross and I have to take it with fat so that it will be absorbed by my body. 
It also makes me hate just about everything in my life. After my first 2 days on it, I got horribly mean and lost all patience for anything. Total rage. Doc wanted me to cut back so I went to night only. I figured if I raged in my sleep, then only my dreams would suffer. Today I started with it in the morning. Hopefully, I will be able to handle it this way. I have been trying very hard to remain calm, but I fear I am failing miserably. I feel like a sick and tired toddler who only wants gentle attention but doesn't know it and is throwing a temper tantrum and won't calm down enough to get what she needs. 


Things that I should accept gracefully, but while I am grateful and say thanks (and am truly thankful), I am so angered that I actually need the help that it is hard to internally accept: 
  • I got my sauna so I can really really begin detoxing. 
  • People from church came over to clean my apartment. 
  • Someone set up Meal Baby for me. 
  • I am set up with Home Hospice care so a nurse will come to my home to help dispense meds and do my injections. (I shake too much sometimes and am worried I will harm myself at some point trying to inject on my own, especially because I don't have a picc line.) 
  • I should be getting a fitted wheelchair this summer! It will be midnight purple, because EMAW!
There are so many other things that I need to take care of before I can really just focus on my healing. I am to have surgery soon, the date to be determined. More info on that next week. 
I just need to wrap up some things with Medicaid paperwork and SSI and other annoying bureaucratic mazes they put up to make sure that the truly sick can't get well soon enough and a well person can navigate easily enough to cheat the system. Though on a positive note, I am getting all the Medicaid help without limit only because of ObamaCare. So right here is one life that law has, and will continue to save. Please, whatever your politics, try to appreciate that. And try to watch yourself when speaking ill of any or everyone on welfare. Without it, I, and many of the people I have come to know, would never be able to return to society as useful members. 



Thursday, June 6, 2013

New Limited Time Fundraiser Sale

Today is hard, but good. One of my friends came over for breakfast. It always makes it easier to have someone around. This last year has been very chaotic for each of us, but we are working on making time for our friendship. This is good. I have needed people to be intentional about coming to me because I cannot go to them. I am an extrovert so I get energy from hanging out with people. On the flip side, I am a Lymie and EVERYTHING is draining. But today, I am good drained. So far anyway. It doesn't really do anything for the physical pain or the nausea, but it does help my mood. 

In case you missed out yesterday, another friend is holding a Pampered Chef Fundraiser for me. Click on the link. Shop for your amazing new kitchen toys. Who are we kidding? We all want all of it. Unless you don't know how to cook, in which case, get some supplies and cookbooks and learn :) This sale only lasts a week so please take a look. Orders must be in by 6/12. She will put 25% of all sales to my medical bills! How amazing is that? Thanks everyone! 

Wednesday, June 5, 2013

Well, so much for accomplishing the full month of May

As this disease has proven time and time again, plans often fall through.

I can't remember the last post I did for Awareness Month. Maybe I will sprinkle the rest throughout the year. In the mean time, I have gotten sicker. I also started and had to back off of the anti-malarials (I will restart after my upcoming surgery.) I barely remember the last couple of weeks. What I do know for sure is that I called, emailed, and faxed my way through to the pharmaceutical companies to receive meds at lower or no cost to me. I have one more left to do, then my treatment will be pretty much covered for a year and then the focus will finally be on just killing the infections and getting well. I cannot wait for this to happen. I am so sick of fighting to be able to fight. It seems as though the fight for the fight is almost done. I really hope this to be the case. 

In the mean time, I have to keep my brain present enough even though the die-off is causing neuro herxing and it makes me seem crazy. Give me all the pain in the world and I can deal with it, but the neuro problems are almost impossible. I become someone else. In the fight or flight, I fight. When I am neuro herxing, I pick fights. Most of the time I don't even remember them later. It is like remembering a movie from your childhood. You remember key visuals or certain sounds, but there is no fluidity or certainty to the accuracy of the memory. This can happen within minutes or days. 

I will be having at least my gall bladder out soon as it is completely disfunctioning and my appendix will hopefully be going with it. I have learned that die off causes toxins (which I knew, and I do the baths and teas) to the extent of shutting down the organs that deal with ridding the body of them. Essentially my gb is filled with toxins so it can't do anything else. 

And, for this week, to help my friend is holding a Pampered Chef Fundraiser on her website for me. We didn't quite reach the May goals to cover treatment; hopefully this will help. Feel free to visit and shop!

Above all, learn to be a self advocate. Hiding the illness will not help you get better. Find jobs you can do without driving yourself into the ground. If you can no longer work, seek out local resources for counseling and case management. No one is going to do the work for you. It is your life you have to save. I have learned that sharing my story and my feelings about my situation ended some relationships, but the people who stepped up to help are true friends even if we don't get to "hang out", I know they love me through and beyond my disease, and after I win this war, I will be able to come through for them when they need me. Frankly I would rather have the friends who face me and my disease without judgement. 

Tuesday, May 21, 2013

May Day 21 Lyme Awareness (Sorta)


Symptoms
  1. Symptoms or diagnosis of Lou Gehrig’s Disease/ALS
  2. Symptoms or diagnosis of Restless Leg Syndrome
  3. Symptoms or diagnosis of Rheumatoid Arthritis
  4. Numbness

Now we have officially made our way into symptoms of co-infections. I will start with Babesia (Babesiosis). Many are repeats from Lyme, which gets confusing, I know. 
  1. 5. Unexplained chills

  1. 6. Will shiver even in summer weather with high temperatures. 

  1. 7. Unexplained fevers. Sometimes high fevers

  1. 8. Fatigue

  1. 9. Excessive sleepiness


And again, due to the diseases taking their toll, I will fall short of my goals. I will hopefully be able to compile facts soon but today is not that day.

I have been working my but off trying to get the meds for treatment all the while dealing with severe 'unknown' abdominal pain. I use the quotation marks, because my LLMD is certain it is my appendix and that I need to see a surgeon, but from the distance he is, cannot refer me to one. The doctors here are just trying to give me hard core pain killers and not treat the problem. I have continued to refuse the pain killers which is mostly met by dumbfounded looks from ER doctors and staff who are so used to people only coming in for them.

And on a somewhat separate note, the fundraiser to help me start treatment is finally in the triple digits! $939.91
If you can help that to be reached by the end of the month, that would be fantastic, if not, please share with anyone and everyone.


Sunday, May 19, 2013

Too sick for the May Awareness posts. Hope I will be back at it tomorrow.
In the mean time, the fundraiser about $1,200 short of our June 1 goal. Please help in any way you can.
Thanks so much!

Friday, May 17, 2013

May Day 17 Lyme Awareness


Symptoms

  1. Conjunctivitis, pink eye like symptoms, irritated eye(s)
  2. Visual ‘floaters’
  3. Forgetfulness
  4. Arthritis
  5. Stiffness in major joints
  6. Swelling of major joints
  7. Low body temperature
  8. Night sweats
  9. Tinnitus (ear ringing)
  10. Sore ribs


Facts

  1. Most Primary Care Physicians will not diagnose or even test for  LD. If you believe you have LD, the BEST thing to do is find an ILADS doctor.
  2. You, and all patients really, should not be afraid to be a self advocate.
  3. Only you know how you feel. If a doctor tells you otherwise, fire him/her. (After all, we do hire them for skilled labor.)
  4. Remember, the blood tests for Lyme are highly inaccurate, so even if you have done them and they come back negative, it doesn’t mean you're in the the clear.
  5. Expect to pay out of pocket. At the very least for the appointments. Insurance may still cover some of the meds.
  6. It will be very helpful to find out about community resources in your area. Especially if you don’t have income or very little.
  7. I applied for disability through Allsup and though I was approved in record time, I still recommend you use them or a lawyer if you are applying. (Also, if you use Allsup, tell them I sent you [Erin Hartnett]. They send checks for referrals. It would be nice to have some extra cash.) I applied in Oct and was awarded in March. Don’t be afraid to call and ask about anything.
  8. Keep records of every bill and every phone conversation. Especially when dealing with government benefits. It is their job to deny us to save money. You will likely get denied but if you have good records, you might qualify for free legal aid. I did and my medicaid went through that week and my food stamps got reapproved.
  9. Don't give up.
  10. Don’t give up.

I realize that these are less about the science and politics surrounding LD, but I don’t feel well enough to research today and tomorrow we start on co-infections. (most of this month was started in April)

Thursday, May 16, 2013

May Day 16 Lyme Awareness


Symptoms
  1. MS, Multiple Sclerosis symptoms or diagnosis. White matter lesions in brain.
  2. Hormonal imbalance
  3. Double vision. Eyes won’t meet on a focus point.
  4. Dental problems: tooth decay, periodontal disease
  5. TMJ symptoms. Jaw is painful, movement doesn’t track correctly.
  6. Facial flushing
  7. Loss of coordination
  8. Dizziness
  9. Spinning rooms
  10. Floating sensations



Facts

  1. The most confusing part of this disease is that we can cover up the symptoms for some amount of time.
  2. I can look well, by putting on makeup and smiling, but the pain never goes away.
  3. Many LD patients push through pain for years because they are told there is nothing wrong or they don’t look conventionally ill.
  4. Imagine a pop bottle. Now imagine that at exactly some moment not in control of the pop bottle it will be opened. Now the entire day, up until it is opened, it is being shaken. There is nothing physically that can stop the explosion of pop when it gets open. That is like our bodies. We can “hide” our symptoms up until the precise moment our bodies ‘open’ and ‘explode’.
  5. For me, I pushed through all of schooling even undergrad, working part time, doing rehearsals at night and still keeping an A- average. My body has nothing left.
  6. There are different ways to treat. Some go the prescription medicine route, some go the natural route, using herbal medications, and some combine the two.
  7. Some are able to treat with oral medication. Others require IV meds because they are so late stage and cannot swallow well or the orals aren’t being absorbed by the body.
  8. Yeast becomes a big problem when treating. Lyme alone allows for a happy environment in the body for yeast growth, but when you add abx, the good bacteria in the gut die too allowing for even more overgrowth of yeast. It can cause many similar symptoms as LD. This condition/infection is called Candida.
  9. Treatment will start to diminish symptoms and their severity; the timeframe is dependent on many factors such as how bad the patient was when starting treatment and how well they follow protocols and diet.
  10. Due to the amount of care and medicine needed to treat for this disease and its friends, many patients go bankrupt and lose friends and family and are unable to muster the necessary resources to win their fight.

Wednesday, May 15, 2013

May Day 15 Lyme Awareness


Symptoms

  1. Parkinson’s symptoms or diagnosis
  2. Encephalitis- swelling of the brain
  3. Swelling of eyes
  4. Charley horse. Anywhere, not just calf muscles
  5. Nervous system dysfunction/damage
  6. Organ swelling, damage, and/failure
  7. Thyroid disfunction
  8. Muscle weakness
  9. NEEDING to sit or lay down, sometimes without warning
  10. Weakened immune system


Facts

  1. Because so many doctors, by no fault of their own, have not been presented with the facts about LD,  many do not believe us.
  2. When we go to the ER we have to be careful about using the ‘L’ word.
  3. If we say the wrong thing to the wrong doctor, we are automatically dismissed as crazy.
  4. Even to share other diagnoses is hard sometimes. I have been told many times that I am too young to have Fibromyalgia. I was told by a primary, “You know you can’t have that right? That is only an old lady disease?”
  5. We learn not to share the LD dx and only the other syndromes in order to be treated for emergency problems.
  6. We are told by everyone, we are wrong, crazy, attention seeking, conspiracy theorists, hypochondriacs, etc
  7. We have to live with the physical illness and the isolation brought on by the miseducated masses, some being too righteous to help us. We lose what we thought were close and true friendships.
  8. Young LD patients often park in handicap spots (with placards or plates) and receive disdain and judgemental glares from others in the parking lot.
  9. Those who see the truth and reach out to help are often accused of being manipulated by LD patients and that they should stop helping.
  10. I often say that LD is the best Litmus test. With treatment, these horrible symptoms will begin to fade, and on the other side, we know who we are and which people are truly friends.