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. 

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.