Thursday, May 15, 2014

Happy Awareness month

Holy cow! 
Each day the though crossed my mind to update here. Honestly the thought overwhelms me. I know that May is Lyme awareness month and yet, the idea that I should help educate on the experience is too much to hand for me right now. Last year I listed symptoms each day until I was out of research. 
Right now, I am in the middle of trying to restart oral treatments. I had more doctors and people who were in a position to help, screw me over, again. they wasted 4 months of my life making me wait and labeling me as crazy. And yet, they still want to pretend to help. Case managers should help, not make the situation worse. 
Anyway, I suppose I just want to warn everyone to double check who they are dealing with and if things feel uncomfortable, look into them. 

Here is my May Awareness:

  • Make sure that whomever you're dealing with is open to dialog and education. 
  • If you have to travel 8 hours to get to a decent doctor, then do it. 
  • If you have to beg for the money for treatment (most of us do, don't judge yourself), then do it. 
  • If friends don't believe you even after the science has been shared, you may need to leave them. 
  • Know the science of this disease. Don't get caught up in the pseudo science. Research. Real books and doctors and published research. Most of it won't come from the US, the CDC is really dodgy about this for political reasons. 
  • Know the political reasons. 
  • (While this may seem hypocritical or ironic:) Don't trust Lyme blogs without checking your research. Now experiences of people like me are fine to trust, but check the science, especially if not sited. 
  •  Be careful with doctors. Don't toss around the L word. You may be banned from entire hospital systems. 
  • Use other Lymies and ILADS to find a doctor. 
In the meantime, like I said, I am back on oral meds. My doctor laid out his dream month of building up to full protocol. This was 4 weeks ago. I am still not up to the 1st week of the dream. It is rather discouraging. But I keep pushing. I won't let go of my dreams. So I get up, I take the first dose. I set a 30 minute timer. It beeps. I take the second dose (different meds). I set the timer for half an hour. I make coffee. Timer beeps. I eat and take the food meds. They are awful. 
At lunchtime, I am not hungry. My stomach still aches from earlier. I have to eat. I have 14 pills to take. My lunch is unenjoyable. Too much water. Too many pills. I tackle it anyway. I feel ill for the rest of the afternoon. Three o'clock. I take more meds. Four o'clock, more meds. Dinner, meds. Pre-bedtime, five pills. Bedtime, nine pills. Hopefully, I will be asleep. Start again tomorrow. Hoping I'll level off a bit so I can move forward on the protocol. I want to get on with all this nonsense. 

So, there you have it. The complications and time commitment of trying to kill off these buggers. Questions? Sources for my research? Just ask.  

Saturday, April 5, 2014

Just a quick "Hello.'

Hello.

I don't really have time to share a detailed post. I'll just say this. Things are crazy. Insane. The hoops are ridiculous. The bureaucracy is beyond imaginable. Exhausting. Confusing. Illogical. 

To imagine that one would choose this route rather than a normal job is incomprehensible. This is harder than any job I have ever done. And it pays worse! 

I just need to get IV treatment. I need to get better. I need to work. 

Times up. Stay tuned for the next broadcast of the treatment seeking saga.

Sunday, March 30, 2014

Lyme Financing Stress

Do you ever feel like for everything you cut off of your list, ten more appear? I imagine this happens for most people. I am still trying to get a sign off locally for the care for my PICC. As soon as that is done, then boom. Pre-PICC list done. 

In the meantime, I am really struggling. I feel like this is an unbeatable boss. You know the one? Where if you don't save right and don't have enough health or life saved up, you lose the game. I am drowning in paperwork and government requests to continue to prove that I am sick.
My personality is very Type A. I dislike asking for help. My entire life, I did everything on time and on my own, even if it made things more difficult. This whole experience feels like it has been slowly stealing my identity. When I don't have wins, when I don't feel like my actions are useful or obviously leading to progress, I want to hide in a cave. The catch: I don't feel well in or out of the cave. How do I find a healthy balance? Can I have a healthy balance when I am so sick? Can I have healthy friendships and relationships when I don't have the energy to go to them? 


In the meantime, bills are due. $800 for the ER trip a week or so ago. And that's after insurance covers 90% of it. 

So to beat this game I must accomplish the following:

  1. Continue paying on unpaid medical debt payment plans. 
  2. Provide all the necessary information to the home health agency - basically I have to make the packet for the doctor to sign
  3. Get local doctor to sign off on my needs for the home health agency. My case manager is taking me to the office this week with the packet and we will just sit and wait for a signature.
  4. Obtain money to cover trip to LLMD and PICC placement while still paying old doctor/hospital bills.
  5. Outline my medical history
  6. Make 2 copies of medical history. One for my case manager and one to be dropped off with the nursing agency. 
  7. Figure out if my body will be able to handle treatment and a few hours of work to chip away at the bills. (I spoke to SSDI and they gave me the parameters of work trial.) 
The most immediate financial concerns are the PICC line placement and trip to LLMD (~$400-$500), the most recent hospital trip (minimum $721.40), and previous medical expenses ($8,327). Keep in mind that none of this includes future expenses or current medication costs. 

I know it must seem like all I do is discuss money. It does occupy a large part of my thoughts. The reality is that without money to get better, I won't be well enough to work to pay for getting better. It is such a frustrating wheel to be stuck on. I know that if some of this stress were lifted, my healing would be much faster and easier. 

Having Lyme means drowning in debt. I have seen so many people with this disease struggle so much to stay afloat. I don't feel like I can even see the waters surface. Unfortunately I cannot just take this matter into my own hands and fix it. It is so against my character to not just jump in and fix it. Ugh. So frustrating. 

Once again, my brain is fairly fuzzy at the moment, so please forgive poor grammar and structure.  

Saturday, March 22, 2014

Pre PICC Adventures

Tomorrow was the day that I was to travel to my LLMD to have the PICC placed so that I could begin IV antibiotics. Unfortunately, a few other people dropped the ball. All the paperwork and discussions were unable to take place in a timely manner. Now I am left with finding said dropped balls and lopping them up to anyone willing. I thought I had a good GP here who would help me with ordering home nursing. My LLMD is to far away for them to take an order. I will have nurses here 6 times a week, each time for infusions. Twice a day MWF. IF I can get my GP to order them. I've been trying for months to get these things to work out and it seems that everyone is overwhelmed by my illness and its urgency. People back away from urgency. I'll never understand that. 

Basically, I have all of everything figured out. My meds, the nursing agency I can use, AND (yup really big 'and') they will obtain the supplies, AND my insurance will cover for at least one month. I'll have to fight with them if I need more than one month. For now, I have to assume that after month one, I will have to cover things out of pocket and IV alone will be at least $800. And the usual Rx that was out of pocket $80, has just grown to $107. I know 27 bucks might now seem like a whole bunch, but for me it is. I have $4 in my account right now. Thankfully the fundraiser helped me buy that script and $104 more of necessary medication. 

I have it all figured out. All I need is an order from my GP and continued fundraising. 

Twenty-two months ago, I realized I had Lyme. I am still fighting to be allowed to fight the disease. In the meantime, my kidneys hurt, I am falling down constantly, I can hardly eat (that's why IV meds; to help my digestive system recover and still get meds in), I can barely sleep, I don't have the energy to fight the illness and fight the system at the same time. 

I am not alone. Mine is a common struggle among more than 300,000 Americans. The CDC recognizes only them. My case isn't allowed to be reported because of where I live. Big things need to change. I often hear other Lymies saying they feel like what HIV/AIDS patients must have felt in the early days. Although this disease kills slowly and the pain is so great, it is speculated that suicide is the leading cause of death of those with LD. But, that isn't count by the government so the numbers are unknown.

Please help. Spread the word. Check for ticks. Give 5 bucks to my medical fundraiser. (Someone told me they were embarrassed that they couldn't give more than that so they were hesitant. But if many give $5, it will add up very quickly.) I am stressed about so many things and it would be wonderful to not stress about paying the doctor or for medicine. The GoFundMe link is on the right side of this page. If PayPal works better for you, follow the tab above. 

Thanks, Everyone! Happy Spring! 

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 ;)

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 ebslymefunding@gmail.com. 
Or you can visit the fundraiser page which uses WePay at http://www.gofundme.com/15ta8o
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.