Saturday, March 30, 2013

Lymie Living will return soon.

Thursday, March 28, 2013

Fighting through filing

Tonight I want to talk about the government stuff. I have been avoiding it for, well, mostly because I am scared that if I say the wrong thing, I will be turned down. The right-wing cry that people (they are referring to people like me) are cheating the system and we need to be more stringent is by far one of the most harming things for me to hear. I try not to let it land on my heart. Most days I do alright. Today, I put together my meds for the next week. (there is a post a while back with a picture, double the amount of pills) I spent some time with necessary errands and lunch with family. 

When my roommate came home with the mail there were to absolutely devastating letters. The first was from Medicaid. I am not going to go into details because it is still and open case, but I want you all to understand the non-medical stresses here. This letter stated that I had not brought in the appropriate paperwork and then listed said paperwork. ALL of which I turned in LAST Friday. Maybe it is a simple office error, but still terrifying for me. 

The next one said that I didn't report my income (of which I have none) correctly and will have to appeal to keep food stamps. And once again, I don't know where my next meal will come from. 

I collapsed on the floor in a terrified wail. I reported exactly what the case manager told me. Obviously, I cannot feed myself if I cant pay for meds or housing. I am beyond upset. I feel like they want us to fail. Like they get some gold star when they deny someone. And to imagine that one might want to go through this process to get free money is... insane. Truly. By the time I have made sure that my papers for the state are in line and where the need to be on time, I am so stressed that my stomach is worse. And if you follow this blog at all, you know that keeping each meal down and pills down is a full time job. So here is my plea to you: I don't care which side of the aisle you find yourself, but for every person cheating the system, there are countless literally, factually trying with the last ounce of whatever they have left to survive. Isn't my life worth enough to you to stop complaining and make my suffering a tiny bit less. Over and over I have pleaded out into the darkness to make the fighting only be for my life and not for the system to deem my life worth their dollar. 

I feel like I will die, before someone at a desk, whom I've never met, will decide that I am worthy of help.

Wednesday, March 27, 2013

The Doctor

This morning while wondering what I might do for some relaxation today, I realized that even though I joke about it often, in many ways we live in the future. Now I don't want to get into the physics of time and such, but I mean the future that we put in our art 40-50 years ago. And now we are living with technology that was in cartoons when I was a kid. Example, I can sit here and write this and watch Netflix on my tv. Any thing I want. (Well, there are some restrictions. Come on already and put Boy Meets World on Netflix!)

But anyway, I don't have much insight into Lyme Life today. I just wanted to say how much I love Doctor Who and I cannot WAIT for this weekend when the new episode comes out. 

See I do have things non-Lyme related in my life. I think today, I shall watch some of last season in preparation of Season 7 Part 2. Also, if you have any nerd in you, you should watch Doctor Who. And Sherlock. I could go on, but as I am still coming to terms with just how much of a nerd I have become I will refrain, unless asked to provide a longer list. 

Now I must return to the Doctor. 

Monday, March 25, 2013

The Very Hidden Sweet Side of Lyme

My typical day shall continue later. Provided that I remember to do so. Sam joking said he should write that part. Instead today I want to talk about the Lyme community.

We are hidden. We are hurting, lost, hopeless, lonely, confused, and discarded. But, and this is a big but, we have each other. The day I found that there were others who understood what I meant when I said, "I feel like I have fish nibbling at the back of my forehead," brought about a big change. You and I both know that the fish thing sounds a bit weird crazy, but that's just it. This disease and its lovely friends bring about so many odd physical sensations. It is only reasonable that our minds would create an image to attempt to explain them.

Beyond symptoms, we help each other through the changes that chronic disease brings. Many are abandoned by friends and family for a variety of reasons. We feel useless and unneeded.

Just like any other path through grief, you can see the stages in fellow Lymies. Denial. Though this one usually happens before one finds the online communities. Sometimes even long after passing this stage we hit it again anyway. I thought to myself the other day, while trying to force my body to sitting position, "I can't have Lyme, must be something else. I am going to work today no matter what and prove to them I am ok." Guess what. I am not ok. I did make it to the bathroom and back but that was pretty much my day.

I am not going to detail the Lyme experience through all the stages here. I am sure most of you have some familiarity with them. But just in case, I will list them. Denial. Anger. Bargaining. Depression. Acceptance.

The depression one is the worst. It is generally accepted that the leading cause of death from Lyme is suicide  I don't want you to think that these people have done anything wrong.Suicide by Lyme is still death by Lyme. Sometimes I feel that the most evil part of this disease is that it rarely kills quickly. It takes years. (Some die of organ failure.)

Now that I have all of that explained, I can get to my point. This is one thing that fills me with hope more than anything else. Lymies, no matter how bad they feel themselves, will always talk a depressed or anxiety ridden peer down off the edge. In doing so something special happens. Something so uniquely human. We might not even believe ourselves in that moment that our own (physically miserable) lives are worth it, but we convince someone else that theirs is. And do you know what? By the end of the crisis, we are all saved for one more day.

Lyme is horrendously ugly. So are it's friends. The steal dreams and happiness from each person they infect. But I have found that for everything stolen, from a career path to a friendship, something sweeter, deeper, and meaningful takes its place. For when an individual is stripped down to her core, she discovers what is most important in life and can finally let go of the meaningless fillers.

Sunday, March 24, 2013

A Typical Day: Part 1

Through the grapevine, mostly, I have heard things alluding to the glamorous life I live. Lounging around all day, having my roommate wait on me hand and foot. This frustrates me to no end for several reasons. One, that the people who allegedly say this, don't have the spine to ask me about their suspicions, and two, this is so far from the truth it is laughable.

Let me illustrate a day in the life of a late-stage Lymie.

12 am: Hope to God that I am asleep. If not I am writhing in pain. Freezing on the inside and sweating on the outside, trying desperately to find a happy place half under the heated blanket and half without any blanket. If for whatever reason I have yet to fall asleep I will likely see 2 am.

2 am: Hopefully I have been asleep or am currently falling asleep.

3-6 am: During this time I wake up screaming or whimpering in cold sweats maybe 1 to 3 times.

7 am: Wake up to use bathroom. Attempt to sit. Hope I can get up in time to get to bathroom. If I can stand, I do. If not I crawl. Once standing, I walk to bathroom. However it's much more of a Captain Jack Sparrow with his missing rum falling towards my destination. I have many odd bruises. Perhaps this is why.

8 am: Repeat 7 am activities.

9 am (give or take): wake up. Now I realize that 9 is sleeping in for most of you. But I have to get as much sleep as I can to be strong enough to kill the disease. And if you have read to this point, hopefully, you'll understand that I am not getting nearly enough of that much needed deep sleep.

10 am: Hopefully by now I have been able to sit up and get out of bed. Next step is to get food and juice and pills. I used to eat breakfast on the go. Down in what seemed like seconds. Now it's a good day if it only takes an hour. At the same time, I have about 15 pills to take with my food. I'm estimating, as I haven't counted lately it just makes me depressed. I do count when I get down to the final 5 to 7 pills. Repeating to myself, "Ok, Erin, just 5 left. Bite of muffin. Pill. Done. 4 left...'' Sometimes I am able to distract myself from the nausea by watching Hulu or Netflix. 

11 am: Breakfast and pills are done. Set 2 hour timer so I don't take the next dose too close and hinder absorption to to binding of minerals. I want only to go back to sleep. However, if I lay down, I will almost certainly vomit. Must spend the next hour keeping everything down.

12 pm: get paperwork gathered for offices I must call this afternoon. Filling for help takes lots of work. Sometimes I can't even think well enough to read a single sentence. On those days, I rest waiting to be well enough to hold a conversation with the person on the other end of the calls. That might not come. I spend most of my coherent time arguing over incorrect doctors' bills and similar problems.

1 pm: realize that while everyone I need to call is back in the office my 2 hour alarm is going off to take more meds. This means force feeding. Again. If I don't eat then I can't make the calls and my eligibility for assistance might be compromised. Ok, now is one of the hardest parts of the day. Making a decision. See my breakfast is pretty standard. Lunch is not. See one of my symptoms makes it difficult for me to know if fresh food is actually fresh. My brain tells me it is rotten and smelling it makes me feel sick. If the scent does that, imagine trying to eat it when my body is convinced it is rancid. But food is required for pills and pills are required for a future.

2 pm: Hopefully the food and pills went down and stay down. I set the timer again. I might get hungry sooner as I likely didn't eat enough. Just the smallest amount necessary to get the pills to their place. I make my calls. They stress me out. There are many who try to take advantage of the sick. Overcharging. Claiming I haven't paid when I hold the receipt in my hands. Accusing me of exaggeration. You name it, I have heard it.

3 pm: My brain is mush. Many times I lose my normal voice. By this I don't mean laryngitis. Due to sheer exhaustion and over work, my neurological problems force their way out of the hiding spot in which I had so carefully placed them. I cannot replicate this on demand. I only know it exists because friends have pointed it out (and the rude store clerk who argued with me saying I "must be British and joking around trying to convince him otherwise").

4 pm: This is where things get fuzzy. I am trying to remember what the afternoons this last week were like and I can not for the life of me remember. I do know for fact, that I spend many afternoons horizontal on a couch, floor, or bed. Usually fading in and out of consciousness and definitely screaming out in pain. 

The rest will have to be continued in another post. I just can't remember any more right now. 

I believe Sam had just pick me off the floor while I was unconscious and got me safely tucked in bed. No idea how long I was out. 

It is important to realize (as I scanned what I just wrote) that each of these hours is littered with unplanned collapsing in pain and dizziness, falling into walls and furniture, and screaming out to no one. There is a fine line to walk once I know I am sliding downhill. Do I need to be in my soft (read: safe) bed, or is food more important? If I pick food, will I pass out and injure myself in the kitchen before I have the chance to even get said food. If I pick bed, how long will I be stuck there with no way to the bathroom and tremoring from lack of food? Desperation is trying and finding I misjudged the time my body was willing to give. Too often it's too late and I must wait for Sam to come in and get me to a safe place and pour juice down my throat hoping to see a glimpse of me peek back through the symptoms. So, please don't say to me or any other chronically ill person that you're so tired and would love to spend all day resting on the couch like us. We would give anything to be exhausted from work or any/everything else you do. We NEVER feel rested. We are sick. Our lives are anything but lucky and glamorous. And don't say it behind our backs; it will always get back to us. Often from multiple sources.

*I understand how the above paragraph may come across angry. That is not the intent. When dealing with real life and death sometimes the only thing to do is state the facts. That is why the assumptions and declarations of the well people in my peripheral world that I am living the easy life hurts so much. It is so far from the truth and if they were to speak to me and learn of my reality, I might not have to suffer through their unfounded accusations on top of fighting everything else.

Stay tuned for the rest "my typical day". My brain is done for now and I can no longer recall my own reality.

Saturday, March 23, 2013

Please take note

You've heard me say it before, but I will say it again. I HATE asking for money. Hate it. At my core, I am one of the most independent women you will ever encounter. During this process I have had to swallow my pride again and again. Each time, it chips away at my self esteem and self value. So I came up with a helpful solution. As you can see, on the side bar of the blog is a link to my donation site. If you feel like giving there, please do. If you can't afford to give money without getting something in return, I have a new option for you. Take a look up at the Tabs. You will notice a new one. It is called, "A Rewarding Way to Help". Clicking on this tab will find you with information about my personal Mary Kay business. 50% off all sales will go directly to paying for my doctor's visits, medicines, supplements, and basic survival supplies. Please understand that I am not attempting to advance my career through this request, I am merely trying to stay alive. 

It is important to note, that I will only receive your order if you go through the link on this blog. 

If you know me personally, you know that I sold MK for years before I got too sick to work. I loved it. I loved the people and the product. Even if you don't use it, please consider trying the skin care line. (We even  have a fantastic Men's skincare line!) 

Bottom line: I am struggling to pay for this fight. Please consider helping through the fundraiser page or through buying from my website. Also, it would mean the world for me if you spread word and let all your friends and family know about my story. Maybe they have the heart and means to help. 

Thursday, March 21, 2013

Remember Who You Are

Chronic illness is a weird thing. If people are aware of and understand the illness, sympathy is a given. If people are not, sympathy becomes rare. Sharing breeds awareness. Awareness leads to acceptance. Which leads to change. The atmosphere around Lyme and Cos needs to change. 

I apologize in advance for the initial rambling, but I promise it will tie together in the end. 

This week, as I said, my official blood test positive of Lyme came back and I was finally diagnosed with Bart and Babs. Off of some meds and adding several more. It took me 2 hours today to organize my week in pills into the correct baggie for the time and dose of each. I have 4 bags per day: breakfast, lunch, dinner, bedtime. I think I am somewhere around 30 pills a day, but I will be adding 4 more as soon as they arrive in the mail. 

 My disability case is approved, but I still have to bring in papers to... Honestly, I am not sure why. Every call I get finds me in a very confused and disoriented place. It is very difficult to follow directions in that state. Last week, I requested an email or letter detailing what I need. I think I have everything. My friend, Sam will be taking me to the office tomorrow.  
I was very lucky. I applied in September, so by their rule, Oct 1. My technical disability began 2 years ago. I got my approval letter a few weeks ago, but like I said, I am not sure what that means as I don't think they have decided how much help I will be awarded. No matter what, I know that meds and doctors will still be very difficult to afford.
Anxiety is a common symptom of Lyme and Friends. This means, I freak out about what being awarded means, and how I am going to budget (Yes, I am trying to do the math without the numbers. I can't help it; my brain does it without permission.). I freak out about being alone in the apartment even though we live in a secure building. I freak out about the clutter, no matter how much people tell me the place looks great. I constantly have this feeling like I am late for rehearsal. )SMs will know how bad that is.) I am constantly on the edge. Learning to let go of that which I have no control is a very difficult practice. 

Part of growing up is learning who you are. Part of having a serious infection in your brain is having behavioral impulses that contradict your self. I don't blame the bugs for my actions. I take responsibility for them. But, at the same time, my actions are infected. Learning to stop infected actions and impulses is one of the hardest things I have ever done. There is still a long way to go. Trust me, by no means, have I gotten them under control. Learning that they are a symptom makes it much easier to accept why I have the impulses, which in turn makes it easier to not stay mad for example. (Also, the extreme anger is almost always followed by fainting and having seizure-like episodes.)  It is far too easy for a chronically ill person to become lost within the fight and the symptoms. There is a fine, fine line between continuing the fight for ones life and the entire life being lost within the fight. In this case, the person begins to lose his/her identity. 

All of this is what has been happening. Of course, this is the abridged version. But hopefully once can see why with all of the legitimate concern and stress of forcing food and pills and not giving up mixed with the symptomatic anxiety that suddenly, while quite content, I completely break down and cry for an hour. Alone. (Have I mentioned that I am extremely extroverted?) 

Something else I have learned that definitely applies to me, and I wonder if other Lymies have this too:
People who knew me before I went neuro (bacteria passes the blood-brain barrier and all sorts of not so fun neurological things happen), I feel know me better. I feel like they know the me that I know. The one that gets trapped inside the painful tremoring body that hates everything  They know my drive, my heart, my passion, my artistic voice... They know me. Somehow no matter how sick I was, I was able to push through and get my work and play done. No one knew just how sick I was until I had pushed myself too far and my body gave in to the disease. I long for the days where I am only that level of sick where I can still be productive. Isn't that messed up?! But, it's the closest thing I remember to being well. 
Recently, I have been trying to cultivate relationships with people in my community and deepen current relationships. What has been weird for me is that when I speak to people from college, who knew me before my body was completely broken, I feel as though they are reaching into my heart and pulling my true self out to show me again. I sadly become so overwhelmed with trying to sleep, forcing food, choking down pills, and fighting through a bureaucratic maze to get help to survive, that I do lose myself. Life becomes the fight. 

This is not what it should be. Right now I must fight. I mustn't forget why. If I lose myself, then I will have no reason to fight. Tonight, I was so overwhelmed that I called a friend from college and left a slobbery voicemail. He called me back. We talked for an hour. He reminded me that one does not need to be strong every moment; to remain strong, purging is required and I should cry. (I spent many years not crying in front of anyone. Bad idea.) An hour later, we were laughing about the past and dreaming about the future. 

For those who are sick, call your friends. Those who are well, call your friends no matter how sick or well. 

Wednesday, March 20, 2013

First LLMD visit

Well we made it 9 hours there and back to my first REAL LLMD appointment. Kids, don't be fooled; just because a doctor is nice about Lyme, doesn't mean he knows what you need for treatment and getting back to health. Please find a trained Lyme Literate doctor!

Positive diagnoses of Lyme (blood and clinical diagnosis), Bartonella, and Babesia. Test to be ordered for other co infections. But I will have to raise the funding for them. 

During the neurological exam, well, after really, I feel into the corner of the cabinet and got a nice little cut on my scalp. I couldn't stop laughing at myself. I had to have the nurse bring me ice. 

We learned that pretty much everything done to treat the false diagnosis caused the Lyme to dig in deeper and take an even stronger hold on my system. Basically, every single part of my body is infected. 

First thing on the agenda is to stop current antibiotic treatment. I must begin sleeping again and stop loosing weight if I can even hope to kill off the bacteria. He wants to see me in person in 5 weeks after I get the new meds going. Anyone up for a long road trip? I could really use a ride. 

Overwhelmed, yet oddly hopeful, I will leave you with a song by a friend of mine. 

Alisa Turner, It's Not Over