Wednesday, February 26, 2014

Sleep

Somewhere along the line... perhaps with the winter daylight times, I started going to bed obscenely early. I always was a night owl. It served me well when I could work. My best hours began somewhere between 9 and 10 at night. Now I am falling about by late afternoon. And instead of waking with the sun, like one would expect, I am waking up 2 hours prior. I know I need sleep to heal and I take it when I can get it, because it is rather hard to come by for me. This is ridiculous. I must figure out how to fix this. I know it is partially due to the morning phone calls I wrote about the other day. I just had to be cohesive enough to talk to the bureaucrats who run my life. I started by needing to make calls at 8. In the world of POTS or NCS or whatever you want to call it...(Lyme sxs) one must prep her body for an unusual amount of time in order to correctly communicate her needs and understand in turn, what she is being told. I have had to do this since high school. Getting up was a 2 hour process. I had to have my alarm then snooze, once, maybe twice, then juice or salt or both. Then I walked, crawled, or fell downstairs to a tv. I had to watch mindlessness for an hour before I could steadily stand, speak, eat, and get cleaned up. 
Thankfully, I don't have to worry about getting cleaned up each day before I make calls. The shower has always been a dangerous place for me. I can't have the water too hot lest I pass out. Too cold and my body goes into a shock-like state with tremors beyond normal shivering. 

I cannot wait until things are just in order and I can get back to my normal, productive schedule. 

In the meantime, I don't want to see 3 or 4 am from the front end for a while. I would much prefer to be up and working until then. (Hint: I never ever worked a 9 to 5. But I most certainly worked, and hard.)

Tuesday, February 25, 2014

Morning phone calls

Weekday #1:
Get up before everything is open so I can be aware enough to conquer my world.
First call doctor.
No response

Next specialty pharmacies. Get 3 new numbers. Follow that lead for an hour only to be told that I have been misinformed and they cannot help me. 

Call medicare.
Find out that the end of previous trail wont work.
Get new numbers and websites to search for proper suppliers.
39 min

Call supplier medicare told me to. bust. only out of pocket unless the home health agency provides them.

Total: 2.5 hours chasing rabbit trails with nothing really accomplished

Afternoon was spent recovering.

Weekday #2:
This morning I woke up at 4 with strange and severe abdominal pain. I tried my best to go back to sleep. In the end, I got up and readied myself for more calls. I called the first doctor's nurse to double check what I really need to accomplish before my visit this coming Monday. I called when the office opened and left a message. Then I had to wait for a callback to know what the rest of my day/week/month will entail and what I will be able to accomplish. 
Finally she called back, but didn't know exactly what needed to be done. Said that we can discuss things next week, but that the doctor really needs to see me to know. 

I am waiting on flight information. I hope I can get there by plane. It is 1/4 the travel time. 

Also waiting on doctor here to schedule to speak with LLMD. I am exhausted. 

I hate waiting on others to ensure what I need to accomplish. This whole thing takes way to damn long. 

Thursday, February 20, 2014

Starting on Empty

I know I am not updating this blog very consistently. I keep trying to write, but am having some brain problems. Most of my energy is in strengthening my body to prep for the IV antibiotics. And eating. Eating takes an unnatural amount of time an energy and causes pain. 
If you have just stumbled on to this blog or have been following for a while, know that my original purpose for writing is to share the trials and tribulations of someone dealing with chronic neuro-Lyme and co-infections. I have a hard time sharing. Not because I don't want to, but because my life is so complicated and painful that I fear sharing even the most simple facts seem like this is the place I come to complain. 

That has never been my intent. I want to chronicle my experience. The medical, social, emotional, financial and other aspects of my life aren't unique to me. Many other Lyme patients have similar stories. My goal is to document as I go. I have such terrible memory sometimes so this also serves as my little reminder. I know there are too many people who write Lyme off as psychosomatic and its suffers as crazy or just depressed. 

It is isolation that causes me the most pain. I am so used to the physical pain, that most days, I just swallow it. However, some I lose my mind. I collapse regularly on my floor screaming, tears flooding from my eyes. Sometimes, with luck, I make to my couch or bed. With 3 to 4 doctor appointments a week, it seems like I can never rest. I know that sounds like nothing compared to a full time job. But I have worked full time. This is 24 hours of hard work. Even sleeping is hard. If I don't do everything just right, I can't stay on top of who I need to call for which medical problem or schedule the appointments or figure out how to get there. All of this is exhausting and causes physical pain. But when combined with the isolation it is nearly unbearable. 

Nearly everyday I want to quit. I want to quit the meds and the phone calls and the appointments and the tasteless food. I want to quit. I want to quit with the hope that the rhetoric about just get a job and you'll be better or some equal falsehood, might come true. I will not heal if I quit. The only way out is through. That is the toughest of all my pills to swallow. Hint: not believing in something or likewise believing in something so strongly does not make it true. 

My blood tests were positive. Lyme rarely tests positive even when it is Lyme. I will not stop. I will not just give it up because you don't believe in evidence. Even if my fight is a minute to minute ordeal, even though right this moment I want to quit, it's not actually something I am capable of doing. Do I will complain to myself, distract myself with Hulu and choke down my dinner pills. To be followed in two hours by the bedtime ones. Hopefully, I will sleep alright so I have the energy to fight tomorrow. I started today on Empty. 

Tuesday, February 18, 2014

It's ok

It really is. I don't have any ill feelings left to wish upon you.
You can leave. I don't need you.
You deny my reality. You tell me I am wrong about my situation. You laugh at me.
No, I really don't need that. You continue to prove you only have that to offer. 
Good-bye. Peace to you. I truly hope you find real happiness. 
Real happiness must come from inside you; not at the detriment of others. 
Especially others you have called "Friend".

You told me we will always be friends even though I am acting ridiculous. Not a friendly statement.

Thing is, I am not acting. I am a terrible actor. If I weren't and I enjoyed acting, why would I love stage management so and choose to never audition?

I get it. Kind of. You are doing your best to cope. You made up your mind and then went after facts to prove you right and me wrong so you can let yourself off the hook.

I can't just take an anti-depressant and get a job and suddenly be better. 

I was on and off of every anti-depressant and anti-anxiety medicine you have ever seen a commercial for. Trust me, they didn't help. Bandaids don't help when you've been shot. 

But it is ok. I might not be. My body is really fighting. My mind too. But I am not depressed. I am extremely ill. I miss my life. So much that when I have an inkling of feeling better (which is still not feeling well, just felling slightly less pain) I work. I just can't work steadily enough to earn money to cover my medical costs. Hence the constant fundraising.

When I say, "It's ok" I mean. I am not mad, sad, or anything towards you. I have let you go. I mourned the loss of my friend long ago. Now I have closure. 

I have fewer friends these days. I know my behavior has been a large part of that. I was and still can be pretty erratic at times. I have a symptom of the DISEASE. I have three bacterial infections in my brain. Fact. Positive tests. So you deny me that, and you deny my reality. 

My behavior, I know, is hard to understand. Harder still to explain. Harder still to handle alone. My brain tells me lies. When I am nearly paralyzed with pain, it is hard to rationalize with my Self what is real. What is a true threat. I often mistake a benign experience as a very threatening one. Sometimes, you may think that I am feeling awkward because I am uncomfortable with being sick. I am not. I am simply in pain. I am beyond physical comfort and to try to be 'normal' in social situations is hard. It can come across as though I don't accept my situation. In reality, I just don't always want to be looking sick. Sometimes I just want to pretend I am well. I got so good at it that for years, most people didn't know anything was wrong. It nearly worked. (Actually it worked so well for so long but just until the point I was too sick to cover it up and now people think I am acting when I am finally showing the truth.) I thought I could keep tricking my body to be healthy by acting so. But, sadly, the day came where I was too sick to hide it from anyone. I had to let people know my secret. I had been hiding symptoms since 2nd grade. I wanted to excel. I want to be the best of the best. I still do. Right now, I have to kill these infections. 

In the meantime, I am probably very awkward in social situations. Not because they make me uncomfortable. I love being around people. I just haven't found the sweet spot between pretending I am well so I don't have to explain, and letting people see how sick I am. Young people are very uncomfortable around a very sick peer. I am a very sick young adult. 

Oh and I am really sorry if I seem to be really really awkward every time you see me, there are a few people that for the life of me, I cannot connect your face with you or your name or the last time I saw you or why I should know you. So if we know each other and I look lost, please just kindly remind me of who you are. 

*the you in this is not one person, but a substantial amount of people. But if you know part of this was written to you, I hope you can either understand a bit better or have the grace to judge me no more. 

After all, I miss having friends around. But, I would much rather the handful of people willing to see me look at them and ask them their name after they have been with me all morning and just say, "I am so and so and we are friends..." then to chase after people who don't want to treat me with grace, love, and understanding. 

It is ok. I won't be chasing you anymore. I deserve better. I'll have more energy now to heal. I will not be coming back to our friendship. It's ok. I wish you nothing but the best. 


(If you don't know me, I hope you don't think this cruel. This, the place I am emotionally right now, is the healthiest I have been since revealing to the outside world that I am sick. Many people don't believe me and while they are part of the larger problem, they can no longer be part of my personal problem. Like I said that is ok. I will no longer be grabbing people to pull their head out of the sand. But what is really not ok, is saying you love someone and not accepting their reality. If your partner, child, sister, friend, roommate is insanely ill, don't label her insane. Love her/him and learn to help. Education and awareness will save lives. Many people who suffer this disease die from suicide. They become so isolated, unloved, mocked, forgotten, homeless, hopeless, penniless and seek only peace. Please be a part of the solution not part of the problem. <3)

Sunday, February 16, 2014

What STILL needs to happen (In the next 2 weeks. Ahh!)

My last post was a list of what I needed to accomplish next. Well, some of it is done. I worked from the bullet points and added my updates and some more details. 

  • Meet with the neurologist again. 
    • DONE
  • Sign papers to get my records sent from neuro to LLMD 
    • DONE
  • Orchestrate with my new local doctor and my LLMD to ensure that I can safely have a PICC line so far from my LLMD
    • Still working on this one. It is really complicated and frustrating
  • Schedule and hold another LLMD appointment to figure our which meds will be IV and which can stay oral.
    • Appointments are scheduled, but I have a ton of paperwork and phone calls to complete in the next week and a half
  • 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. 
      • Done!
  • Figure out the Rx codes to see what insurance will and won't cover
    • I don't have codes per-say, but I do have lists of what I will need and I need to make sure that I can get the med supplies and medicine once the picc is placed. 
  • Order refills of current over the counter meds.
    • Raise $350 for that order to take place.
  • Raise money to go to LLMD twice and soon. $450 + 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. 
    • If the GoFundMe payment scares you, the Paypal fundraising email is ebslymefunding@gmail.com
      • Thanks for any of your help!
  • Stay committed to finding a good diet that gets me what I need without making me sick
    • This has been really hard lately. My cravings are indescribable. 
  • Don't lose anymore weight
    • Very hard to do on a restricted diet
  • Keep a decent attitude
    • I am ok sometimes. I could use some more presence from friends, but I do understand that everyone is busy.
      • If you have my phone number and are thinking of me, please text me and let me know. This goes a long way to keep me going. :)
  • Revamp fundraising efforts- in case you were keeping track, the needs in this (updated) list costs me about $800 for March and doesn't even touch past costs. Future medical costs will be minimum of $100 a month for Rx to $400 when I go to the specialist.
Please continue to spread the word! I am grateful for everyone who helps. Thanks!

Hug your Lymie today! Just be gentle ;)