Monday, January 13, 2014

What's next?

This morning I wrote my statement of intent for my grad school application. One thousand words on the dot. It's been stirring in my head for 3 years. I cannot wait to actually apply. I am overwhelmed by what has to happen in the meantime. 

  • Meet with the neurologist again.
  • Sign papers to get my records sent from neuro to LLMD
  • Orchestrate with my new local doctor and my LLMD to ensure that I can safely have a PICC line so far from my LLMD
  • Schedule and hold another LLMD appointment to figure our which meds will be IV and which can stay oral.
  • Figure out the Rx codes to see what insurance will and won't cover
  • Order refills of current over the counter meds.
  • Raise $350 for that order to take place.
  • There is a $530.66 bill (I got the day after Christmas) for the test that told me I don't have MS, Parkinson's, or ALS (yay!)
  • Raise $530.66 to pay for said bill.
  • Raise money to go to LLMD twice and soon. $400 + travel expenses
  • Continue scoliosis treatment so I can sit and stand. And, oh man, it's tough.
  • I have 3-5 doctor related appointments weekly. 
  • Continue on Rx medications
  • Unless the PICC completely raises this cost it's about $100 per month.
  • Have enough money to pay for Rx meds. 
  • Stay committed to finding a good diet that gets me what I need without making me sick
  • Don't lose anymore weight
  • Keep a decent attitude
  • Revamp fundraising efforts- in case you were keeping track, the needs in this list costs me about $1,400 and doesn't even touch past costs. 
For the first time in a long time, I know I can win. I need to expand my circle of support and I need to raise money. My attitude is, mostly, ok and sometimes even hopeful. I am so stuck in forest. I am inside a tree. I can't even see that there are other trees. I know these steps will lead to another long list of things to do, but looking back, as my brother helped me do, I have already done so many lists and steps. I am making progress, it is just crazy difficult for me to see. 

If you want to help my cause, you can give money on PayPal to 
Or you can visit the fundraiser page which uses WePay at
All of this is on the blog already but it doesn't hurt to post again from time to time. 
There is really no donation too small. Whether or not you can give monetarily, please share my cause. Maybe someone out there (or lots of someones) can help me get where I need to be so I can get back to life and work and helping others instead of begging for help. 

Sunday, January 12, 2014

Fleeting Mind. Strong Emotions.

Some friends came to visit me yesterday. It was lovely. We had a wonderful time. Drank tea. Caught up. Unfortunately, catching up means that I must also disclose my (currently) hellish existence. I don't mind disclosure in and of itself; if I did, I wouldn't have a blog about Lyme life. However, there are only a few ways the conversation can go.

  • They are being polite, but don't actually want to know details
  • They are being polite, do want to know details, but don't know how to react to them
  • They really want to know details because I have gone MIA and they are concerned for my well being and politely coerce the status quo out of me. 

(At this point I should probably note that I originally wrote the draft for this after the third of the above scenarios played out and was totally wiped. So forgive the lack of fluidity and understand that I am choosing to keep what I wrote as to illustrate how drastically my brain function can sway. In addition to this tidbit in parenthesis, anything with a bullet point is something I am writing after the fact. When I  feel better physically and therefore emotionally. It also explains why nothing is in order. 

I begin with hugs and the common, "Hi! How are you/how was your Christmas/show/vacation ect?"
Friend responds with a typical and instinctual, "Great! How are you doing?"

Now this is where the real part of life takes hold.

Sometimes I don't want to share. It feels like complaining to me,  so I say something vague, like, "I'm ok," or "Eh, you know," or I bypass the question all together and ask about them again. Some people take this as me being uncomfortable with the fact that I am sick. Honestly, I just don't feel like actually explaining how hard things are. I am much more interested in the active lives of the people I care about. I am sick. I have been since the last time I saw you. You asked how you could help and then when I responded you (not all of you, but most) pretend that you are incapable of helping. I never ask for much. Some sharing on social media about my fundraiser and some friend time. Like a PJ/Netflix/tea date. I know everyone is busy, but if you don't want to help, please don't ask. It is much easier for me to deal with that than feeling abandoned by someone who pretended to care. I am much more likely to be honest with what is going on, if you were more present to me when you see me. I don't want to be a nuisance. You said, "hello" because we made eye contact and everyone else in the room is pretending I am not there because they are scared to say anything. 
I get it. I would avoid a Debbie Downer too. The thing is, if you don't give me the time to actually update you then the next time we speak, I have even less to say because things are no doubt more complicated for me now. If you did know where I was in relation to treatment, symptoms, etc and what I am doing to enjoy life, then we would have something to talk about. Soooo, I guess what I am trying to say is, "I am more than my illness. If you don't want to hear that I am still sick, stop asking how I am." There are plenty of topic I would love to discuss that have nothing to do with Lyme. If you want to know me, I probably want to know you as well, and I am sure we can find a common ground. 

  • I know that some of you really do care, and want to provide help, and know me, and work 100 hours a week or live 100+ miles away or whatever else. If you are one of these people please try to discuss with me when you ask if there is anything you can do, something that is actually within the realm of your ability. :) Like phone calls or texts or Skype or sharing the fundraiser and raising money.  

Sometimes I need to let myself be open and vulnerable to whomever I am speaking. These are the people who always make time for me no matter how far away they actually live.
The downside of this is the sharing makes me feel like I am complaining; it takes for-freakin-ever to explain where I am on the bureaucratic path and the medical path. It's hard to tell the difference between complaining and updating on a very hard part of my life. Maybe I know that these people REALLY want to know what is going on. By the time we get to me as a topic, I have already asked

  • ..... And here is where my brain stopped working and I have no clue where I was attempting to go. 
  • So I guess, I was trying to get at, if you really want to know HOW I am ask HOW I am. If you want a nice little chat, pick a topic and ask me if I am interested in that. 
  • I know I could have totally rewritten this, but I want to share how fleeting my mind can be at moments. 
  • I am not mad at you if you are uncomfortable with my illness. Trust me, I have much more to worry about. However, if you want to be friends, I totally ok with that and we can work on the comfort level thing. 
  • Here's hoping this made any sense at all! 
  • :)

  • Oh, and if the people who visited read this, please know I am an now way upset with you. I really did enjoy your company and I know you do help. You get me to my LLMD after all. :) I just became overwhelmed with my situation. I don't often think of it as a whole. I am very much in the one step at a time phase.