Monday, December 10, 2012

Concentration

Do you know what is odd?
Having a conversation. Like normal people do, but not following. Even a simple topic. In normal conversations one person says something and the other responds. 
I totally forgot why my friend would say what she said. I can feel my neuro symptoms sinking in. I am typing letters where they don't belong (thank goodness for the squiggly red line). If you've noticed that my posts aren't always focused, it is because I only get a limited amount of time before my brain quits one topic and moves on without even asking me. 

(I was speaking with a college friend recently who noted that she read a book by a man with, I think, alzheimers. He wrote what he experienced while he experienced it. I think I might attempt to do this and move away from the updates... If I can remember..)

This is very typical of my communication lately. Well, life in general. I got stuck in the shower this afternoon because I could not remember why I was in there, not to mention the steps to washing my hair and getting clean. Even tonight. I sat down to do my Christmas cards hours ago. Now writing is hard on my hands so I kind of expected that to take a while, but my level of distraction has been out of this world. My pain has progress to that point of numbness I spoke of in my last post so everything seems to have stopped as well. I started conversations with fellow Lymies on Facebook, ate dinner, went and found my scarf loom when I suddenly remembered where it was (important to do before I forget again), responded to some important emails, worked on a new scarf (for just a few minutes), watched (still watching) Monday Night Football (though I keep forgetting who has the ball which is very unusual for me), had the following conversation, and then decided to write about it. And since that decision (and starting this sentence) I have stopped several time to remember what exactly I am trying to do. And with that I will leave and attempt to finish those cards...

So here is the conversation:

omg caitlin i am looooosing my mind. in th last five minutes i have spilt my coke on the carpet, tangled myself im my laptop cord, triped over said laptop, cleaned up said coke, then tangled the yarn around myself and laptop cord, THEN lost my crochet hook...
oh no
lol
damn that coke
well its gone now
lol
i love pepsi
coke is too "spicy" and fizzy for me
9:07pm
omg i forgot what i said and i was thinking well thats out of the blue caitlin, but im glad you like pepsi....
then i remembered.
pepsi is too lemony for me





Sunday, December 9, 2012

I need help

I keep thinking to post I must have something profound to share. I guess I just need to remember that this is meant to chronicle my experience. 
This week is very hard. I think I am herxing again. Though I don't really know why. I am having horrible nightmares making sleeping hard and migraines when I am awake. 

Luckily, I was able to spend one day visiting friends who are like family. I had such a great time, but have really paid for it. I was gone for all of 1 day and came back Thursday  I am still very sore and sick. I feel like I have the worst hangover of all time and the flu. This week I wasn't as able to stay positive when people asked how I am. I want to say that I am doing better, but the truth is that I am really suffering. Now, I know that the treatment is hard and some of my current symptoms are indicative of die off. (I spent one day feeling like I had a sunburn on the entire right side of my body- die off in my nerves.) Walking and standing has been hard. I haven't been able to take care of myself well. I can barely fix meals, even the ones that are pre-made and frozen. The dementia is still present. My pain is, well, let's put it this way, I pass out when it gets too much to bear and my brain kind of turns my body numb. When I come to, I know that I am in pain, but it doesn't quite register and neither does anything else. Conversation and reasoning go right out the window with my perception of pain. 

I need help. Plain and simple. I need financial help to keep a roof over my head and meds going into my body. I have applied for SSDI and Medicaid. I am still waiting to hear on both. I have at least gotten food stamps. That definitely helps but it isn't enough. I really really hate asking for help. I struggle daily with my inablility to provide for myself. I keep thinking, "I should be able to do better than this. I should be able to work, think, walk, talk, eat, sleep, make money, etc." But my harsh reality is that I cannot. I need to accept that and swallow my pride and ask friends and strangers even to help me get to the next step. This breaks my heart. Please if you read this, share my story and fundraiser with your friends and family. Every little bit helps. Even pocket change. (My fundraiser link is on the right.)

This process has taught the importance of the little reminders. I typically use my "good" time to spend with friends or family. I think this has given them an unrealistic view of how bad I really am. It can take me days to  prepare for an hour or two out of the house. And afterward, I am stuck in bed or on the couch or crawling on the floor between the two. I will not stop this though. Someday it will not take days of prep and payment after. Someday, leaving the house will just be the norm. One day. But in the meantime, it is pointless to fight for my life without regular reminders for what I am fighting. I need to see the people I love and have fun. It keeps me going in between. 

Tuesday, November 27, 2012

Thanks

Well, I survived my first big holiday during treatment: Thanksgiving, otherwise known as National Lymie Cheat day. I ate all the food I wanted to eat. Then I got a great big stomach ache. And then I got a great big neuro herx. I am back to my Lyme diet (and will not be cheating any time soon) and waiting for the hallucinations to stop. I honestly can't remember if I have shared about them before. They were one of the first bad neuro symptoms to pop up this last summer after I had a round of doxy for normal infection.

It is commonly accepted in the Lyme community that if you herx on abx, it is confirmation of borrelia. That is what ultimately lead to my blood tests and dx.

Anyway, I don't have tons to share right now. Still trucking. Still fighting the powers that be for assistance to keep fighting. My anxiety and visual hallucinations are more obnoxious right now then scary, at least for me, and only after the fact. In the moment of course, they are utterly terrifying. Some day when I have more energy, I will share more of the neuro Lyme experience.

Ok so what lead me to write today was a site called Lyme Spouse for the support of, obviously, Lyme spouses. I browsed it. It seems like good info for anyone living with a Lyme, married or not. It is a site that hopes to grow. I hope that those who live and love with Lymies are able to get some support from an understanding community.

Lyme is one of the quickest Litmus tests for people and relationships. It's unfortunate that it has been forced on us, but we are lucky. We get to know who truly loves us. Those bonds grow in strength and depth. I have never been on the healthy side of a Lymie relationship (I include all kinds: romantic, familial, and friendship) so I can only imagine how hard it must be to watch someone you love suffer and not being able to fix or heal the illness. Caretakers are often told to drop their Lymies. That someone else should be doing the caring. That they should be institutionalized or moved into what are actually emotionally unsafe environments with a relative who doesn't believe in Lyme or treatment. These actions would hinder treatment so very much.

So to those who fight with us and keep us alive so we can fight another day, thank you! You are not alone. Others understand. Your efforts do not go unnoticed. Trust me. 

Thursday, November 15, 2012

Absence


Well, obviously I have been gone a while. It seems that the entire month consisted of preparing for one or two activities each week with all required days to get ready and then days to recover. All and all it was a decent month. My body has finally acclimated to the antibiotics, but I am having a hard time getting all the supplements in. My memory has gotten worse. Somehow, my spirit stronger. Though thinking about it, it is hardly a mystery. I credit my friends. I have spoken before about those not strong enough to handle this with me. At them, I am no longer angry. Honestly, I would walk away from this crap if I could. But I have learned who are truly my friends and they have become family. I hope they understand that once I get through this and they need anything, I will do my best to be there and help them. Even now, I can only give my voice, but I hope it's enough. I long for the time when I can safely take myself out of the house and drive to a friend's or meet them out somewhere. For now, the true friends are not begrudging me anything because I cannot. I get it now. I don't need or miss or cry over the ones who left. I celebrate the ones who are here (and who drive across the country to support me for a night). 

My Alma Mater had an awareness event for me. Raised enough to get me one more month of rent. But at the end of the night it was not the number that mattered to me. It was the reminder that I am their "sister". They love me. They think and pray for me. They haven't forgotten. They believe me. And they will be there when I come out of this. 

See before this event, I was struggling. Not the normal, I hurt like hell and can't eat, sleep, or move kind of struggle. The "I don't know if I am worth this fight" struggle. 

That is the one to watch out for. I worried that I had become so jaded to "friendship" and cynical about the painful effects of it that even if I did survive, I would come out the other end alone and unable to trust anyone. I feared that I would only have the friends by whom I felt abandoned. What kind of life is that to fight so hard for? Answer: none. 

I was right though. I had hardened by the experience of friends walking away. In the end you must find your worth in yourself, but if you have no one to share the good of life with, it is hard to value the good in yourself. 

I was wrong however, in calling those people "friends". Even without Lyme, I am a tough person. I don't let people mess with me. I am outspoken and I will always fight for what I see as right or good. Some people cannot handle that. They just can't. We are too different. I had forgotten that side of me. Until I went back to school to see my "family". Suddenly, I fell right back into my true self, the one I had become afraid to be by threat of being left alone. These people celebrated me. They focused on who I am, not what I have. I suddenly remembered. 

Yeah, I am a fighter. Yes, I will win this war. I have so many more people behind me than I realized. Sometimes you just need a reminder. A call, a text, a fb message, a coffee date, or a large get-together. I know what I am fighting for now. I am fighting to experience life with the people I love who love me back. 

Now that doesn't mean that each moment isn't a struggle. It is. I still feel awful. I still have to choke down food and meds. I still cry and wake myself up shouting in pain. I still haven't gotten SSDI, I still have things to pay for and no income. I still hate that I must rely on donations until the SSDI comes. And I still panic about where and how to get help. So please, if you have read this, post the link to my fundraiser (upper right hand of this page) on your Facebook or Twitter or blog and ask your people to help in anyway they can. Even 5 bucks helps. If no one helps then I can't pay for treatment and housing. If many give just a little, it helps me vastly. One less medication to worry about affording... and so on. 


A special shout out to George, Keenan, Dr. D, Marci, Andrea, and as always, the one who keeps me alive day-to-day, Sam. 

Sunday, October 21, 2012

For the last few days I have been pondering what might make a good post. My mission is to share what this disease and treatment are like. The problem this week is that nothing new has happened (that I remember). I did move. Everyone knows how hard that is. It seemed impossible to figure out what was flaring due to the moving or the rain or the season change or treatment.
Today, now that things have settled down a bit, I have started to rebuild my supplements back into my routine. I got a new phone app that allows input and reminders for all ones medications. Holy cow. It goes off every 1-2 hours. I knew I had many medications, but when I actually have reminders to take them, I feel like I finally choke one dose down and then the phone beeps at me again.
I have finally accepted that killing these bugs is my full time job. The doctors appointments and phone calls to argue with "healthcare" organizations (quotes indicate how they don't assist with health or care) feel like a second full time job.
I am becoming more and more accustomed to my new diet and hate it less than when I started. That's not to say that I don't want bread and rolls and bagels and pretzels and doughnuts... Well, you get the point. Gluten is yummy.

Oh, I did just remember some odd things this week. My hands and feet have been worse than ever. It makes  doing anything excruciating. There is no hyperbole there. I was actually crying out to no one (or Sam when he was home) for help or relief. Of course, I remember this while typing. I kept thinking, "Wow, this really hurts. What the crap?" Ok and with that, I must leave you all to your own Sundays. Enjoy!

PS That amazing K-State Wildcat win yesterday made me one very happy girl. Thank God for football, otherwise I would surely lose my mind.

Saturday, October 13, 2012

So sorry for the absence. I am moving this weekend. It is also raining very steadily- which translates to extra bad pain. Mind is dead. Body is... not, but I need to recuperate. Hopefully in a few days, I will have the mental and physical ability to write again. Until then, be well. 

Friday, October 5, 2012

War updates


Medical update: (the basic, most obvious symptoms)
rash on arms and chest
hair falling out
migraine daily
severe air hunger. I feel like someone has reached inside my throat and is slowly strangling me.
hard time with food. Only wanting the bad food. Things I can eat smell rancid. 
I am still losing weight. Now my skinny jeans are too loose on me. 
my hands currently have a dulling pain but most of the week its been crushing
My legs are constantly cramping in opposite directions.
My back pain never lets up. 
The visible cysts seem to be disappearing. 
Broken capillaries. The spots are no longer only on my stomach. The are slowing getting bigger. 
Dementia. It's back. Like a poorly written villain in an unneeded sequel. It's the most difficult to believe and hard to deal with problems I am facing. 
Oh, and a lovely fever. 

Tactical update:
 I am gradually continuing to built up on treatment. I need to reintroduce some herbals to help my immune system. The doxy has me usually feverish.  
SSDI application has been submitted. I have been fighting and jumping though hoops to talk to someone regarding my food stamps. No one seems to agree on the status of my application. I will be getting a case manager soon to help me apply for Medicaid which then will help me get someone like a nurse to come in and help me. 
The first fundraiser has provided enough, unless I get new meds, to get me through mid November. 
I just found out today that my BNI chapter will try to come up with some fundraising ideas.
And K-State theatre will be doing a Midnight Madness Benefit for awareness and fundraising. 
I swear, once I have fought off the invasion of the buggies in my body, I am going to work so hard to fight for awareness and policy changes regarding this disease. I am bring hell the bugs. I will kill them before they kill me. 

Moral:
This week it really suffered. I don't really remember much of it. What I do know is that I feel like I got my ass handed to me in a fight club of sorts. I have been struggling with keeping my goal in sight. Now don't worry. I am not quitting. It just seem hard to keep moving in a direction when I feel like I don't know where the destination is. I honestly don't remember what it feels like to be well for more than a few days at a time. Those of you who know me know I have had periods where my functioning has increased, overall I have had a steady decrease.  I am trying to get a clear picture in my head of my goal for this fight. I dont know if this makes any sense. Basically, the destination is hard to stay focused on because, for me, true wellness is still a fantasy. 
Even though I don't remember all of it, I know this week was hard and it completely wore me down. I have realized how bad it is for an extrovert to be stuck alone all day, but I am learning to deal with that too. 
Though I feel beaten this week and felt alone for most of it, today included a visit from a friend and a phone call from another promising thoughts, prayers, good vibes and help.

Wednesday, October 3, 2012

Warning: this gets a bit "ranty". I did say I would share what I was going through. So here you go:


I don't know if there is a word to describe what I have been feeling. Its beyond exhaustion, frustration and sickness. When i am well enough to think correctly, I am not well enough to do anything productive. Then I get bored. I am stuck looking at screens all day. It's so boring. I'd really like to read a book, but cant hold one for long enough. When my mind isn't well enough to function, I feel like i'm losing the fight. It is so hard to see that there will be an end to this. I don't truly know what well feels like. I am in hell trying to get to a point that, today, this week, anyway feels like it is impossible. Is it crazy to fight with everything you've got for something that you find hard to believe will ever happen?

On top of everything else, I am running out of funds. I will be ok to about mid November. I just hate asking people for money. I have been arguing with the local office for food stamps for 6 weeks. They are making me jump through hoops. I know that a certain amount of people will always cheat the system. But don't you think that the people who really need help have the time/ability to play these stupid games. 6 weeks I have been getting letters with false threats of no approval only to be told over the phone that it's wrong and I am sent to another number to leave another voicemail to wait for another call that won't happen. And when it doesn't I have to call again and still not talk to the people i actually need. 

I am getting angry. I cannot tell if its a symptom anymore. maybe i am just actually mad. I guess you would be too if you never saw anyone. You never get to work. You never have any sort of good consequence for working your ass off (having and treating lyme is like having more than a full time job). I know I don't have an actual job right now. But trying to get well is literally the hardest thing I have ever done. Every single thing I do is work. Getting out of bed in the morning is work. I have almost zero apatite and I have to work to choke down food just so I can choke down pills. Pills that kill the bugs so if I don't work hard enough to detox i feel worse. The catch is that if i don't feel well enough to detox i get so toxic and I cannot to anything. Well, anything that doesn't include being in bed and screaming in pain while trying to distract myself with Hulu. Oh and crap tv is hardly a good distraction. I long to be able to suit up and warm chat and hold classes, make money, build my team, and lead those women to success. My dreams are beginning to fade. I am not going to quit, but without a vision of where I am going, it is awfully hard to go. 

Ok, finish this tea. its 3 o'clock, and granted you couldn't get up and out of bed until noon (not nearly as glamorous as it sounds) you ate food. You're half way through your morning meds and you must continue. 3 hours not in a bed and I am ready to go back to sleep. I cannot sleep that ever elusive food stamps call was promised to happen by the end of business today. I cannot miss this call. I am nearly out of food. Must fight to stay conscious. Hulu please have something to keep my mind going. This stupid (well not really, but right now that's how I feel) site that keeps track of how much I write each day is urging me to get to my 750 words. My hands hurt.  You know that fleshy part where your thumbs attach? I feel like they had pig weights dropped on them and then they were inexplicably stabbed. Why? Well, when you kill Lyme it freaks out and so do its evil side kicks, we so "lovingly" refer to as co's (co-infections: the other crap the tick gave me) The bartonella has been really pissed off at me this week. My face painfully swelled up the other night. There are two muscles in your leg the most interior muscles on the shin bone, both opposite of each other and both cramping. It is as if they are working together to break my leg. And with that I have 750 stupid, painful words.   

Like I said, "ranty". Here is hoping things start to look up. 

Friday, September 28, 2012

ouch


You know that feeling you get when you have had the flu for the better part of the week? You can't even pinpoint symptoms anymore. You just know you feel like crap. All I can think is, "well, somethings terribly wrong." I'm shaky and dizzy even when I am lying down. I am hungry and nauseated at the same time. I feel fat and famished. 
I missed a very important phone call this morning because I was too confused to understand what what happening when Sam handed me the phone. I passed back out and didn't wake until nearly 1. I cannot seem to keep my mind occupied with anything. I cant read. I tried. Holding the book was too much for my hands. Even typing this is a strain, one i will surely pay for soon. I have grown bored of Hulu and Netflix. 
Air hunger is awful today. If you don't know what i mean by that, its the sensation of not getting any air in your lungs. In actuality, i am getting air but my red blood cells are struggling. therefore, lack of oxygen in the body. 
I am scared. (Probably for no reason.)
I feel shaky. 
I am tired of being alone. 
I miss my life.
 (I am going to have to nap before finishing this entry.)

Some how i miraculously managed to take a shower. Though it took way longer than i had hoped. I tend to get stuck in there.

I also got the mail which proved to bring on yet another fight. See, I applied for food stamps over a month ago. I was so hesitant to do so. I never wanted to rely on the state for help. But after much thought, I accepted that my situation is precisely why those programs exist. I applied. Three to four weeks later, I received a letter stating that I was denied because I missed my interview. This was the first correspondence I had received. No letter. No phone call. I called the number on the letter and got the automated system that we all enjoy so much. I left a message. Four days later I called again. I finally talked to a human. I explained what had happened and she said she would have someone call me by last week. Well, I have been herxing hard and never got a call and didn't feel well enough to call them to check. This morning Sam hands me a ringing phone but i was too symptomatic to understand that I should answer it (yes Lyme really does rob you of that ability). I called them back this afternoon. They put me back on the interview list. This time I made certain to explain that my symptoms are horrible in the mornings and afternoons are the best time to call. Well, in the mail I received yet another denial letter (keep in mind, they called this morning, after said letter had been sent) stating that I missed my interview and am denied again. And another letter saying I might be eligible for expedient food stamps. So I called again. I left my name and necessary identification numbers and now I begin the wait... again. 

On top of feeling like absolute crap today. I don't understand how anyone expects someone so sick to be ready and able to answer a call when given no time frame. There are so many obstacles to get though that have nothing to do with my health. I am trying to get assistance from non-profits that maybe can each pay a fraction. I am in the process of filing for disability and medicaid and help with a housing voucher. But until those are in or approved or I've jumped just high enough at the right moment, I rely on friends and fundraisers. 

I am so tired. I am tired of hurting and being sick. I am tired of not being able to take care of myself. I am tired of people not believing me. Lymies fight for their lives everyday. Why must we fight our friends, family, community and government for acceptance and understanding and belief in the disease?

On a totally separate note, I have received two small messages on Facebook over the last two days. Both made me cry (the good cry). I have spent so many hours crying in pain; this time it came from feeling loved, not forgotten. Thank you! 

Thursday, September 27, 2012

Openness


Over the last few months I have changed my openness that never surrounded my symptoms. You see, I feared that if people saw how weak I truly was (I must pause to move to a safer, softer place as i feel im about to pass out....)

30 minute later..
I was scared that if I let people see the severity of my health problems they would only see my symptoms and I would fade away. I never wanted to be the sick girl or someone who you couldn't count on to do a job or show up when a friend needs help, but realistically, that is where my body has place me right now. I wouldn't say that I lied, I just kept some things to myself and shared on a need to know basis only. The more the symptoms grew and intensified the more isolated I began to feel. I looked around and people didn't believe anything I was saying. Apparently I was starved for attention (the wrong kind, the kind you get when you lie). In all honesty, I am starved for attention. The right kind. I don't enjoy staying home all day barely able to get up to feed or bathe myself. Don't worry, I am not asking you to bathe me. But having people want to see me feels good. A text or Facebook message can make my day. I don't know if I am... I don't know if I did something wrong... but I feel as though people have decided I am not worth their time. It makes no sense. If I did something to hurt them or you, I will gladly have a conversation about it. I will work to become a better version of myself. I cannot do that unless I am told what I did wrong. (Not trying to get out of anything here, but my memory is soooo bad. I do genuinely want to change my habits for good.)
I know people have misunderstood symptoms as me being (insert seemingly random negative adjective here). I am sorry I am not able to control my symptoms. Once this disease is understood by people who don't have it, I hope people will more easily forgive things over which Lymies have little to no control. 
What does make me happy is when someone messages me and asks to come by to see me. Oh boy, this makes my day! I know (I hope you can understand) that this visit will thoroughly exhaust me. It is ok! I can plan accordingly. 

So this entry has ended up being about something completely different from when I started because I literally just now remembered what I had set out to write before my body so rudely interrupted. Oh yes, openness. It is a terrifying thing. Even to people who aren't fighting a disease and a social stigma that follows it. Human don't like being vulnerable, and yet, it is so incredibly necessary. Without it we lose the ability to connect and empathize. One look at our society full of escapism, and one can easily see that we do anything to feel something (or not feel anything) as long as it doesn't pertain to us. Sickness is scary. Being young and chronically sick is also scary. I don't know how many times I have heard someone say, "but you're so young," when they find out my basic symptoms. This is hard to hear, but the sympathy is recognized. I kept (mostly failed) my symptoms hidden from people for as long as I could. At the same time I was developing my sense of self and how I interact with other humans. I realized that I had few meaningful interactions because people didn't understand who/what I am. I know I am not my Lyme. But I have been chronically ill since childhood and it hardened me, making me cynical about true and open connection in relationships, both romantic and otherwise. This is not something I enjoy about myself and I am working hard to be honest with myself about my physical and neuro disabilities so that I can, in turn, be actually, truthful with others.  I was scared of what they (disabilities) meant to define me. What other dreams might they steal from me? So I ran. I ran hard. I ignored symptoms. If I didn't acknowledge them, might they fade away? After all, I have been told countless times, "it's all in my head." So hold said head up high, ignore the pain and carry on just like my peers. 

But it was never and could never be just like my peers. As adolescents, we want nothing more than to fit in. I did everything in my power to do so. People still saw me pass out on a regular basis or saw the terrifying tremors. What they never saw or would never know about were the hidden pains. The high levels of constant pain in my left shoulder.  I would wait until I was alone to cry out in pain and fear. Migraines that last days would become a blessing when compared to the one that lasted over 4 months.I sat through lectures in college with sunglasses on. In one particular class I had what was later explained through lyme, a then incorrect dx of a partial stroke. I lost movement in my left side. I remember my left hand moving without my control and then nothing. I kept taking notes. The Prisoner's Dilemma.  That was the lecture subject. And while my body held me hostage, I fought with every fiber to keep going. Even if my keeping going was to sit for another 30 minutes and then ... I honestly don't know what I would have done. Thankfully, being the nerd who always sits up front and shoots her hand in the air, my professor noticed something was off and helped me into the hallway. From there I called for the disabilities van to take me to the health center. See, way not normal. 

But as my health declined past the worst I had experienced and continued to fall throughout the summer. I realized that my hiding would likely get me killed. I choose to open up to friends and family. Some of them accepted what I told them and some didn't. Lyme truly caries a social stigma. There are all sorts of legal issues surrounding treatment. The CDC guidelines don't even begin to cover it all. People strangely distrust the government in many ways, but believe everything the CDC has to say on Lyme. So I get branded a liar or attention whore or a hypochondriac. I lost many people I thought were friends, but the amazing individuals who stepped up with me when I chose to fight these bugs are true friends and I am so blessed to have them in my life. 

The lesson here, Kids, is not to hide who you are or what you're experiencing. People who belong in your life will stay there. If everything is based on a lie, the relationship desperately needs a change for the health of both people. If you cannot handle the truth of people's lives, you need to spend some time with the truth in your own life and heart. It will be hard, but well worth it. 

Friday, September 21, 2012

Inner Monologue


I actually wrote this yesterday, but forgot to post it. 

Second increase in abx was yesterday. I feel somewhat cognitively here. My voice apparently sounds fine. I am sooo exhaused and my feet hurt. The new Upillow did wonders for my sleep last night though. It still wasnt a perfect nights sleep but it's the best I have had in a while. I keep wanting to do productive things. I suppose that is my personality coming out from behind the illness. You know like shower eat, clean up, pack for the move. Every time I stand I get dizzy and fall or I stand up just long enough to forget what I was going to do and become entranced by the room swaying. It's quite relaxing, kind of like being on a boat, until you realize that the room shouldn't move like that. I keep looking around at all of my belongings. I like what I have and I have certainly downsized since I moved from Manhattan. But, I still feel like I own way too much. I don't want to be emotionally attached to so many items. Yesterday I started researching tips on getting rid of junk. I learned about the 100 possessions practice. Which is exactly what it sounds like. I am sure I have half of that in medication and health items. All of which I actually need. Then there is a room like the kitchen. People keep one plate, bowl, and utensil per person in the household. That just doesn't seem practical to someone who can hardly eat sometimes let alone clean the dish afterwards. (Thank god for dishwashers.) But I would like to cut down on items. Where do you that best. I love my books. I find comfort from having them near me. I dont have that many. Ok well maybe a hundred. But I have gotten rid of many in the past few years. Some people say craft supplies or candles are easy to cut first. Well, not if you used these things on a very regular basis. I guess non-artsy, non-theatre people can toss something without thinking, this is a great prop/costume etc. Is it ok that I am willing to let myself stay comforted by the collections I have amassed? I really have the most when it comes to furnature. My grandma died a few years ago and I got a houseful. I love her stuff and I am very comforted by the fact that I am surrounded by things of hers. When I am well enough, I manage to keep them clutter free. (My clutter tends to be medicine bottles, doctors/pharmacy receipts, and (looking around... ) thats mostly all of it. I do really hate the clutter though. I also hate taking all of the medicine too but I cant really do that so I guess I will have to find a way to keep it off of my flat surfaces and in a place it calls home. Sam is now working 4 jobs. Meaning, I am mostly alone. I haven't decided how I feel about it. I suppose that because I have no control over it, it really doenst matter how I feel. I keep trying to do more and more on my own. I am more and more exhausted and in pain. I need to get back on the herbal treatments. I cut back when my throat started having a hard time with the pills. Even food gets stuck and I feel like I am choking. Add 20+ pills and the 750 ml it takes to get them down and we are talking a very full and upset stomach and throat. I wish i could take more than a pill at a time. I used to be able. I cannot remember when I took the abx. I need to take the probiotics. I dont want my gut to start having more problems. I cant rememeber what day it is. I keep panicing that I have missed my friday appointment. I look at all the calanders and they say thursday yet every 20 min or so, I panic again.. This is exhausting. All of it. I really hate that I dont have the mental capacity to concentrate long enough to keep a job. (Not even thinking about the conscious part) The remembering meds and when, and food and when, and detox and when, and, and, and... is well over a full time job. It's 168 hours a week. I feel like I am downing in it already and I just started treatment. Oh.. My kingdom for a day without symptoms.

Wednesday, September 19, 2012

Lyme and "Friendships"


The past few days have been hard. But not just physically. I have finally balanced out on the current dose of abx, and am supposed to increase again today. I am not looking forward to that herx, but if I don't keep moving through hell, I wont ever get to leave.

Now for the real reason I am writing today. People like to tell Sam what they think I should do. So in response, I have composed the following:

First of all, let me tell you that yes, I am in counseling. And yes, it is to deal with Chronic Lyme, but mostly it is to deal with the bullying and abandonment by people who are supposed to be friends. Only a few people (you know who you are and I am truly grateful) have actually asked me how I am and what I am going through. Others like to ask Sam (or tell him what to do without really understanding what is happening) as if I can no longer speak for myself. Truth is I can. I am still a person and I still have an identity. I still enjoy interacting with others. 

I know people read this blog and worry that I am either faking these symptoms (I think this sentiment makes it easier on their ego to walk away without guilt), or not physically ill (it makes it easier to write someone off as crazy), or a hypochondriac (it is too scary to think that this disease is real and I was normal before I got it and they could get it too), or that I am actually sick and I should have someone else take care of me. I know that this is just as hard for Sam as it is for me. I know that when I am better our friendship can go back to normal. I cannot wait for that time. What is frustrating is when people tell him that someone else should help. As his friends, I feel they should speak their mind, but ultimately let him decide and then support his decision and if they want to ease his load offer to help him. They could help with chores if they are uncomfortable with helping me. I have become more accustomed to what my body does and needs and can now do things like shower and dress on my own. What happened at the beginning of the summer was the worst I have ever been. Not because Sam and I are roommates, but because I have been untreated for so long and was unknowingly doing damage to my body. (Yes, working full time and eating whole grains and veggies like carrots were the damage I was doing.) Just because events take place at the same time does not mean that they are cause or effect of one another.  
My life is hard right now. I am not blogging to complain, but rather to explain that this is what this disease, left untreated, can bring. There are thousands of other people who have this disease and are fighting for doctors to treat, insurance to pay, friends and family to learn and understand and not abandon them. I know they are there, because they are my new friends. They are real friends without judgement, with advice when needed, and ear when needed and people with whom I can be honest. 

I would like to invite anyone who has been a friend to me who has been afraid to talk about these tough issues to once again open up dialog. I can't read your mind. Trust me, I miss you.  I just know that the time for easy, let's-grab-a-drink-and-watch-a-game time cant happen until we learn to talk to each other. So please, stop passing judgement. I know I have done things that have annoyed you. They might just be a symptom, and if they aren't how do you expect your friendships to grow and change if you can't discuss problems. 

P.S. Don't stop inviting chronically ill people to events, just know that they might not be able to come. They might cancel last minute and you'll need to be understanding. But if they are able, it might be the only fun thing they do all week. Just knowing they are wanted can change a mental outlook. 

Sunday, September 16, 2012

Bad day

Today I am far from ok. I am a huge mess. I took melatonin last night to try to sleep. I still woke up with some pretty crazy nightmares. I slept well past kickoff, which if you're still a Chiefs fan hardly matters anymore, but Sundays I find comfort in my football. Then I couldn't get the feed of the Jets game (the team I really like who doesn't pretend to be good and suck. They actually play football. It really is a much healthier relationship)
I desperately need to move. This place is actually toxic to my system (mold). I have zero energy to find a place. I can't live alone- it's not safe. There is no way to know when I will get my SSDI and food stamps and housing help. I feel like I am days away from sleeping in my car. The new landlord for the place Sam found won't approve me because I "have no proof of income" and I don't have anyone to co-sign. The fundraiser has given me enough to pay rent, but I have to have a place to pay rent.. I feel so stuck and a helpless. I would give anything to be able to work. Geez.
I feel like I will never have the strength to make it through treatment. I know it is my only option, but today I do not feel like I will succeed.
Each day my pain tops the day before which I couldn't fathom getting any harder to endure, yet amazingly, each day is somehow worse. I need a break from the pain.

I feel badly. As though I shouldn't come on here to complain. I thought about it for a while. With a revisit to why I began writing this blog, I concluded that I must include posts like this. I set out to show what this disease does to people. Today, I am alienated, alone, terrified, angry, and sick. I need some relief.


Edit: 

I wanted to actually document my symptoms. 

My fever is 101*+. Every time I blink my eyes my eyelids feel like they are burning. My face feels like I took a decent left hook in my sleep. My bones actually hurt. You can't tell by looking at me as there are no bruises. I just look hung over. My neck and back are horrible. So tight, so painful and stretching wont relieve anything. The only break I get is in the tub, but I risk my safety just getting in. I don’t want to pass out in the water. I need to eat and yet forcing food down my throat sounds torturous. (besides it wont be digested and it'll come back up) Soon it will be time for another doxy dose and within an hour I'll be worse… AGAIN. 

Saturday, September 15, 2012

Communication


Communication is a funny thing. We know as humans that it is vital to existence and can mean the difference between loving and hating. But what happens when you want to communicate well, and as far as you know, you are, but no one else around you can understand? I am not referring to understanding what living with lyme is like, I mean like cannot understand your sentences or vocabulary. It can be like you are speaking an entirely different language. 

Lymies often have problems with attention spans. This leads to frequent interruptions with something completely unrelated.  I assure you, it not meant as a slight or to be rude, we just honestly forget that there is an existing conversation.  Even now, I cannot remember a good example of me changing the topic so rapidly. This drives people away. We know it does. We don’t mean to do it. The problem for me specifically is that I am an extravert and I love being part of group conversations- a very hard task when you cant remember what is being said. I don’t want to disappear into the corner of the room because I am not participating. So what is one to do?

Try our best to actually carry on the conversation. 

Explain to people that we might seem as though we are choosing to be rude and dismissive, but in reality, we are just super  excited to be part of the conversation in the first place.

And if they don’t understand or believe it is not our fault, if we have explained. But we need to make sure we are clear in our explanations, with brings me to my second point. 

Often we say things that make sense in our brain, and even to our Lymie friends, but not to a brain void of the bugs. I wrote this to a close Lymie friend the other day on FB,
   “There is a quality to our friendship that i totally love and cherish and that is our simultaneous add and ocd and phonetic spelling. i cannot communicate like this wih anyone else without them getting mad an thinking i dont listen”

Our conversations are filled with constant subject changes and often unanswered statements. It doesn’t matter. If it is really important, we know it will be repeated. There is a certain relaxation when I interact with her. I know I can let my brain do its thing and know that she won’t get mad (unless one of us is already mad from Lyme rage, but that’s not on us and we get that). There is no embarrassment for two smart women who cant find a simple word or worry about judgment for not being able to get up and shower or eat or anything. What we have instead is love, help, understanding, and advice. For instance, I couldn’t hold my head up the other day and we were chatting on fb. (I was on my phone as I couldn’t hold my laptop either.) She easily helped me figure out that Samn had actually left food near my bed for this reason. I was able to drag myself to the nightstand (yeah, I know it’s right next to the bed, but that foot feel like a mile sometimes) and eat some dry cereal. That got me able to sit up and get in my chair. After an hour, I finally made it to the kitchen. Like I said, we get it. We get each other. Sometimes we have to help each other figure out how to talk to others. 

Explaining to someone everything that this disease entails is crazy. The list is as long as you’ve had the stupid bugs. We have to do our best to stay focused (hard to do, see how unfocused this entry is and I am having a pretty good neuro day.) Maybe make a list. Or tell your friends that when something happens like repetitive interrupting, call you on it, but not harshly. They don’t want you to shut down or fly into rage. I think the best way might be for them to say, “Hey, are you feeling ok? You seem to be having a hard time staying on topic and remembering that people are talking.”  If it is seen as a symptom, which it is, and we know that our friends get that, it will be much easier to change our behavior. I don’t promise that they won’t have to say the same thing 5 or 10 minutes later, but it should help keep tempers down. 

Our symptoms can cause some very annoying behaviors. We often don’t know- we can’t see it. It changes my speech patterns and even my voice. I know English grammar. There are moments all I can pull out of my head is a noun and maybe a preposition. They might not even be related. Forget about subject verb agreement. Trust me, it is way difficult for us when we know that our knowledge is locked away in our heads and we are denied access. No wonder anger is so common. Add the lack of understanding from others, and you get one very upset and lonely person who only wanted human interaction. Please be patient with yourself and others as you learn to navigate and improve your life whether the Lyme is in you or in someone you love. 




Friday, September 14, 2012

30 THINGS ABOUT MY INVISIBLE ILLNESS YOU MAY NOT KNOW – 30 THINGS MEME



1. The illness I live with is: Neuroborreliosis.

2. I was diagnosed with it in the year: 2012.

3. But I had symptoms since: 1993-94.

4. The biggest adjustment I’ve had to make is: Letting people see my weaknesses. I had to learn that it does not make me weak to show people my symptoms. It makes me stronger.

5. Most people assume: I am faking it or I am not really as bad as I say, because I look ok. Or that I am crazy because of the Lyme stigma that it's not real.

6. The hardest part about mornings are: There is an instant each morning. The first of fluid conscious thought is rehearsal or work or showering and then the searing pain sets in behind my right eye stabbing all the way through to the right lower back of my brain. Then I have to get up. It can easily take me an hour to get the bathroom. Then I have to rest again. Then I can try to make my way to the kitchen to get some breakfast. Then I have to rest. Then I can try eating. This all usually takes about 3 hours.

7. My favorite medical TV show is: House MD. He never gave up figuring it out. There are moments I would have given a limb for a doctor to do everything in his power to actually figure it out and not slap me with a dx which is really just a set of symptoms. There was an underlying cause which is a disease which is now being treated.

8. A gadget I couldn’t live without is: Internet and whatever gets me there.

9. The hardest part about nights are: the anxiety. I have anxiety leading up to bed time. I know it is hard work to go to sleep. I often panic about everything that “could” happen to me in the near future. Then I start to panic about not being able to control it. I know once I do fall asleep, I will have awful nightmares as my brain tries to rationalize the pain my body is in. I wont be able to get comfortable. I will wake myself up screaming in pain. And in the morning when it is actually time to wake up, I will hurt more and be more exhausted. It seems rather pointless really.

10. Each day I take 25+ pills & vitamins. (No comments, please)

11. Regarding alternative treatments I: mix herbals and Western Medicine.

12. If I had to choose between an invisible illness or visible I would choose: I don’t know. There are some days I wish I looked as bad as I feel, but at the same time, it is nice to hide in a crowd and appear “normal”. Although, people might believe me more if I looked like I feel.

13. Regarding working and career: I miss it like mad and can’t wait to be well enough to work again.

14. People would be surprised to know: that most Lymies can hide our symptoms to appear as normal. This in no way means that we feel well or are faking or lying about being sick. It means that at the end of the event/activity when we finally let go, our symptoms and pain will actually be insanely worse than if we just let it out. Picture people, even the Lymie, as  2 liter coke bottles. Throughout the social activity you and your bottle get to sit still, while ours is being rattled around enough to let the pressure build and build. At some point the bottle will pop open whether or not we want it to. Sometimes it is while we are still around others. But sometimes we can hold it off until we get home and then spend hours in bed with seizure-like tremors and severe neurological oddities and pain like you could never imagine.

15. The hardest thing to accept about my new reality has been: that I have very little control.

16. Something I never thought I could do with my illness that I did was: start writing.

17. The commercials about my illness: don’t exist.

18. Something I really miss doing since I was diagnosed is: I honestly don’t remember being well for more than a few hours at a time. (sometimes it doesn’t happen for weeks or months) I know I was when I was a kid, but I don't really remember what it is like. Also, I spent a great deal of time covering up my true problems (see #14).

19. It was really hard to have to give up: sports, working.

20. A new hobby I have taken up since my diagnosis is: writing.

21. If I could have one day of feeling normal again I would: go for a run, take a shower (a very challenging task normally), and create something maybe a painting or such.

22. My illness has taught me: Lyme brings out the best in some people and the worst in others. There seems to be no middle ground.

23. Want to know a secret? One thing people say that gets under my skin is: “But you look so great!” “You seem to be fine/better” yeah, I am faking it. I don’t always want to be the sick miserable one. Or “I knew someone who had that and she got better with….” “ If you just were more active, you'd be fine”. I know what is happening with my body. I am fighting a huge infection, I am not tired because I am depressed. I cannot just be more active. I have researched treatment options and thank you for trying, but I picked my path for a reason. I know I have done more research than you.

24. But I love it when people: ask me to hang out at my house or offer to come get me and take me for coffee/tea, or to a movie or park. Something that I can still do.

25. My favorite motto, scripture, quote that gets me through tough times is: “I say, we kill the beast!” You know the line leading up to the number in Disney's "Beauty and the Beast".

26. When someone is diagnosed I’d like to tell them: “It will be hard. You need to keep going. You may lose some people in your life, but there are amazing communities full of loving people who truly understand and won’t dismiss you.”

27. Something that has surprised me about living with an illness is: how many people distrust in general. And on the other hand, there are amazing individuals with more grace than imaginable, who are willing to help.

28. The nicest thing someone did for me when I wasn’t feeling well was: literally keep me alive (Thanks, Samn!)

29. I’m involved with Invisible Illness Week because: I have made it my new life mission to spread awareness and hopefully help with prevention so fewer people have to suffer through Chronic Lyme

30. The fact that you read this list makes me feel: important. I often feel like I have become "part of the surplus population" (Dickens)

Anxiety

I'm Samn Wright (the "n" is silent.  It's a nickname. Think about it) and I'm Erin's primary caretaker these days.  In the spirit of these posts, I'll try not to edit as I write.  Anxiety is weighing heavily on my mind today; I note that it is the main symptom that Erin is exhibiting today.  Erin was on the edge of losing control of her emotions today as she struggled through her symptoms to wrangle with the Welfare bureaucracy, ya know, to get help eating regularly.  It struck me just how deeply this illness rocks the very core of life, down to the basic necessities we usually take for granted. 

It also struck me how much anxiety I'm feeling these days as well.  Erin just upped her dose of antibiotics, according to the prescribed schedule.  This is worrisome because the very drugs that fight the infection build up toxicity in her body from the dying bacteria.  That toxicity has the potential to intensify her symptoms and even kill her if she doesn't stay on top of it.  In other words, getting better means feeling worse.  And feeling worse today means "neuro" problems.

Let me give an example that Erin probably doesn't even remember.  I came home between jobs this afternoon to change clothes, and in that brief time tried to help Erin get a gluten-free lunch together.  Microwave mac 'n' cheese, yum!  But Erin couldn't read the instructions on the box, so I read them to her. 

"Heat for three minutes, stir, then heat for two minutes.  Can you remember that, Eb?"

"Freezer."

"Huh?"

"Freezer.  This go in freezer."

"Yes, but not now.  Now you're gonna eat it, so...  say it with me, heat for three minutes, stir, then heat for two minutes.  Good, now you say it by yourself."  Conscious of my need to leave for my next job, I put the package in the microwave and set it for three minutes, while listening to her recitation.

"Heat for...wait, what?"

"When this beeps, stir, then heat for two minutes," I sighed.  "Here.  I'll write it down."

 I wrote the remaining instructions on a hot pink sticky pad which I reserve precisely for this kind of occasion.  The doors of the house are dotted with hot pink reminders like, Take Your Key, and Don't Leave Without Shoes And Phone, so when Erin forgets what house she's in and runs for the door, she can get back in or at least be found later.  Of course, by the time I finished writing, the microwave had ticked through two minutes already.  Might as well stay for the other three.

When I finally leave, I'm still anxious that she'll forget how hot the food is and burn herself, or maybe just forget to eat it at all.  When I return I know I'll be anxious about how bad her neuro symptoms have gotten.  And those symptoms may make Erin anxious about what's going to happen to her next, or how she got into this strange house, or who is this strange man who won't let her leave.  Some nights, Erin's anxiety turns to panic and I have to physically restrain her from bolting out the door into the night.  Last night I fell asleep holding Erin down to prevent that very thing.  But, hey, at least one of us slept.

This last summer was very hard.  Erin demonstrated a nightmare circus of neurological problems over a two-month period that strangled at least one very important relationship in my life.  And I'm very anxious that, before the dawn, if things get much darker, one or both of us might break.  But there's nothing for it but to face that fear as it comes. To quote an old adage, "The only way out is through."  And to quote a very wise woman, Mary Anne Radmacher, - "Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying, 'I will try again tomorrow."

Thursday, September 13, 2012

Invisible Illness Awareness Week


Ok, my brain is being dumb today.I have made this entry 3 times and keep loosing it.

I keep trying to do things and write and take care of detox, eating, and getting the care that I need (who would have thought it is like a full time job?)  I really wanted to participate in this. Alas, I can hardly follow my own train of though. I have added an author to the blog. His name is Sam. He is my best friend, roommate, and (hopefully not much longer) my care taker. He will write an appropriate entry for the day. (to be added to this one as an edit if i can explain myself well enough)

Tuesday, September 11, 2012

The Herx has begun

I have been meaning to write, but haven't been able to type. Thank goodness for the red squiggly lines that offer correct spelling. I had a "good" day this past Sunday. I actually was able to leave the house and have some fun. No cane or wheelchair. Though, I did pay for it when I got home. I wasn't able to sleep at all going into Monday. Only after seeing the sun shine through my curtains, did my body finally end it's hold on my insomnia.
Monday consisted of staying in bed trying to fall back to sleep whenever I woke up. Determined to have a pleasant evening of Monday Night Football, I popped some frozen, Lymie friendly soup in the microwave and after catching a glimpse of myself in the mirror (my eyes look more like the sockets in which they painfully lie and my hair looked like I had spent 20 hours in bed) I took a quick shower. I even got dressed in real, it's-ok-to-be-seen-in-public-wearing-these, clothes and sat down with my dinner in front of MNF ate my soup and promptly crawled back in bed. By the time one game of the double header was done, I had mustered enough energy to put my pjs back on.

I have mentioned before how Lyme not only is a hideous thief from those it lives in, but it steals from those around the infected. My best friend and roommate has been suffering as much as me, just not physically. We had a very full and borderline Lyme rage filled "discussion" regarding these problems. And as usual, it ended with me passed out and thinking it was a different time and year. Last night however was the furthest back I had traveled in my mind. I though I was still living in the dorm in Manhattan. I really wanted ice cream (another Lymie no-no). I really really thought I could walk across the parking lot to the Van Zile store and get a pint. Yet, upset with my Lyme and (most likely hurt by my now forgotten words) my friend kept me inside and safe.

I woke up with a migraine, barely able to hold up my body. I reached for my laptop and couldn't hold it. After an hour I was able to sit up and begin writing. Somehow I managed to get the tub running. I expect to spend several hours in it today detoxing. I need it to help. The leg pain is horrendous. The only way to stay in the tub and not pass out is to set up my laptop on the shower chair outside my tub and watch Netflix or Hulu. I actually remembered in time to stop filling the tub. No flooding in here today!

Despite the pain and other symptoms, I feel that I am doing my best at staying mentally strong and am trying to enjoy my life. Don't get me wrong, I am sooooo ready for the end of the bad health, but what's the point of fighting for your life if you don't get to have some fun and enjoy it now?

Hopefully, I will be able to update after the bath.

Oh, and a special thank you to those people who have been keeping me alive!

Saturday, September 8, 2012

Too exhausted...

... to write a long post. So here's what I got:
After 4 days on the doxy, I am right on schedule with a fever. I can feel the herx coming. I need to do better with detox but the exhaustion is getting in the way.
My patience is dwindling. I can hardly tell if I have reason to be upset or angry or sad. All I know is I'm feeling them all-intensely.
I'm hungry again. Finally. Apparently fighting a war uses calories.


Here's hoping I will be able to write as planned tomorrow.

Wednesday, September 5, 2012

I'll get by with a little help from my friends

Except that it's not a little, it's HUGE. Every little bit of love and assistance means soooo stinking much to me.

We have been running a fundraiser for the past week. I am amazed with all the love and support I have received. We are nearly half way to our goal with a week left!

On of my favorite professors, and for that matter, humans, has been an extraordinary source of help and comfort. He likened my story to the end of Les Mis. Saying that I am in the sewers, the most disgusting part of my journey, but at the end, I will have light again. He put it much more eloquently, as he usually does, and this Lymie brain is having a hard time not switching over to Spanish. The Thespian in me somehow connected with that more than any other metaphor I have heard. Today has been filled with trying to get the debts from this summer settled while listening to the soundtrack to Les Mis.

Also, I finally got the antibiotics! Today is the day. I am a bit scared of what is to come, but I promise to keep fighting. Now I must attempt to eat so I can take the meds.

Monday, September 3, 2012

Quick Labor Day Update

Today is... herxing hell. On the pain scale of 1-10, I've forgotten how to count. You know what an "Indian burn" is? I know it's way not a p.c. name and I apologize, but I don't know another name. It's when someone grabs your forearm and twists in opposite directions. I feel like its happening internally around my shins. Two days long. Can we please move on to a different symptom now?

I did manage to take a shower! That is always a huge undertaking and exciting to complete.

Next task is taking my meds and keeping all 20 of them down.

Doxy starts soon. We have been trying to amp up my immune system and basic strength.



OH! And the Doctor is back! As in Doctor Who, not my MD. Steven Moffat makes me feel all humany-wumany. If you have no idea what I am talking about, get to your nearest Netflix and watch Doctor Who episode 1, "Rose". (I warn you, it's a gateway to an amazing obsession.) Season 7 started this weekend. It will be well worth your time investment. You can thank me later. ;)

I am off to take that shot glass worth of pill, attempt to get more from Walgreens, and somehow take the edge off of this pain. I hope everyone is having an enjoyable Labor day.

Saturday, September 1, 2012

Isolation


Lyme is an isolating disease. No one really understands what it does to the body and mind. It causes breakdown of relationships. Not just for the patient, but for the people who do see the symptoms and chose to be present and active in the fight for life.

Lyme comes with personality changes. Rage, depression, anxiety, confusion, lack of personal identity and awareness are all too common.

Here is a snippet of what the confusion looks like:
There are moments when I do not know what year it is. Everyone has written the wrong date on checks. I’m not talking about that. What happens with neuro-borreliosis is a complete short in the brain. I have known my best friend for three and a half years. Sometimes my brain jumps back to a time before we met. Meaning that I don’t know who the strange guy is that keeps following me around. (After the fact, I realize that he is keeping me safe.) In my Lyme brain, he is a threat. You fight or leave when you are threatened. When your brain believes that it is under a fatal attack it takes extreme measures. I have said and done things that I cannot remember after the “attack” on me ends. I hate that I have no control. I physically fight anyone who touches me, even if it is for the purpose of helping me, I don’t have the ability to distinguish the difference. I use words to harm those I see as a treat, because, I guess, if I can’t stop them physically, I have to break them down some other way so that I can be safe from them. These are horrid behaviors. I never remember them. They exist in way too many Lymie lives.

I can’t even imagine what it must be like to stay strong and keep helping when the person is scared of you and fighting back.  

The caretakers and friends either chose to stay and then end up slowly dropping away or see the bad symptoms and run. I can’t really blame them for feeling scared, but fear is a result of not understanding.  Only people who take time to understand what these stupid “bugs” are doing to our brain, find a way to stay. Then they have to endure the judgment from the scared individuals who have already chosen to not educate themselves.

Lyme is isolating enough for the one who has it. Care givers/takes should not also suffer because they have chosen to help save a life.

Lyme does not kill quickly. It eats away at your body, then it takes your mind, then it takes your personality and identify and you are left with nothing but the physical suffering every moment of every day. If you survive, and by survive I mean not taking your own life, to the point of neuro and nervous system infection, it becomes your entire world. A Lymie with the bugs that deep has a choice: fight or quit. It is hard not to quit when you look around and your friends and family have disappeared. That is why it is so important to me to raise awareness about what actually occurs. Lyme kills so slowly that the leading cause of death is suicide. The death certificates will never say “suicide by Lyme”.  Other deaths occur from organ failure, which are listed as “organ failure,” not “Lyme induced organ failure”.


What do you think you would do? I really want you to think hard. I hope you look deep into yourself. It is ok to be scared.  I am scared every day and night. What is important is your choice to grow and educate yourself.  Many of us seek help from God or another spiritual entity. While this provides some amount of comfort to said person, if they are praying for someone with Lyme, they haven’t really gotten the message. (Don’t get me wrong, prayer is powerful.) What I am saying is that Jesus didn’t just go home and pray for the lepers he was physically there with them. His hands got dirty. His heart ached. The prayer must be the source of strength that then leads into action. I think, if we choose to identify as Christians, we might need to drop that label for a bit and instead chose to live in a Christ-like fashion. We must support and push one another to take these actions. Actions become habits. Habits become who we are. We are not meant to remain forever fearful.

If you know someone who is chronically ill, please don’t say, “Let me know if you need something.” Ask specifics. Our brains already have a hard time processing. Ask if she/he is up for a low key movie night. Ask if you can do laundry. Call on your way to the grocery store and ask if they have (again, specifics) eggs, milk, bread. Although, if you’re talking to a Lymie, remember we can’t have gluten, sugar, or dairy. So you’ll have to ask about soy or rice milk, gf bread, etc.

Friday, August 31, 2012

The Beginning

This week begins my treatment for Borreliosis. The little buggers have been trying to kill me for a very long time. Now I know how to fight back. I finally got a diagnosis and am receiving help from my community to start my care. On top of the 20 + pills a day, I will have to completely overhaul my eating habits and begin a good consistent detox. I know it sounds a bit like voodoo or new-age-y crap. I thought so too. But when you are killing bacteria, their corpses gotta go somewhere. When you are killing them quickly, the liver has a hard time keeping up.

I plan on posting my progress and the tricks and tips I learn along the way. I am not sure yet what all this will entail, but, hey, that's what adventures are good for. I am excited to get to know who I am without the bugs. I have had them since (we think) second or third grade. They affect nearly everything. Imagine, if you please, the last time you had the flu. Remember the aches in your muscles? The constant nausea? Trying so hard to keep food down because you need calories? Remember the fever, how cold and/or sweaty you were? Add in a migraine. Add anxiety over... everything. That is the simple explanation of how I feel from day to day.  This fight is to win my life. I honestly do not remember what it is like not to be in excruciating pain each day.

This is not about complaining. This is about awareness. Not only about Lyme, but about who I am in spite of the illness and what we can learn in the process. Life is about growth and enjoyment. I intend to have both. I am a very creative person. If I am not creating, I become depressed. No more. I will put this to good use.  There will be hard days and weeks. Hopefully I am ready.

Expect recipes (gluten, sugar and dairy free of course), crafts, cleaning ideas, good books, detox ideas, facts about Lyme, and the healthy little girl I once was revealing herself once again.