Tuesday, April 30, 2013

Quick Little Update on the way to May Day

This week is full of getting everything ready for the LLMD appointment. I am not sure I know what to expect. I know he wants to start me on Mepron. Which costs at the pharmacies in my area somewhere between $1,300 and $1,400 a bottle/month. So I have been trying to head that off by contacting all the companies that make all the meds I am on to try to get on their hardship programs. It is a bunch of paperwork. Some of it is oddly specific. Like for one company, I have to fax the application from the doctors office the day the script is written. So glad I chose to be proactive on this one. Wouldn't want to come all the way back home only to learn that one. 

For May expect all sorts of fun ;) Symptoms and facts. I realized as I was heading into this, that I have many sources of research and some symptoms are known to be caused by common co-infections so I will incorporate that too. I will make a May tag where all my works cited will be located. It will be easier to find for everyone. 

I am going to try to enjoy the 80* temps today as snow is in the forecast later this week. 
Why yes, I live in the Midwest; why do you ask? 

Monday, April 29, 2013

May is Lyme Awareness Month

Thanks for letting me rant yesterday
Back to the fight against Lyme and not people. Ok, well the CDC isn't people so we can still fight them for their recognition.  May is Lyme awareness month. The reason I was able to self diagnose a year ago. (Then it took almost 4 months to get a dx and 10 months to get a real dx with Lyme and Co's.) It seems strange. It is a year filled with hardship and suffering and I can barely recall the specifics. I write EVERYTHING down now. My apartment is filled with bright post-its and note pads, every piece of mail or important information has been carefully filed into its own manila folder. I still gasp with panic when I suddenly think I have lost something. Only this week have I been able to start trusting my systems. So carefully and not without error, they have been created. In my stage management life, I never double booked or lost important things. I had a binder for every show and a brightly colored divider (with a pocket on each side!) for each part of every show. Now I manage my illness. It's not terribly different. Except the whole this one sucks and no one wants to pay for tickets. The managing process is the same. Call the people, get the paperwork, fill it out, copy it, file away original and send the copy off in the hopes it will bring a helpful answer. It reminds me a bit of that movie "Memento" except I barely remember that movie. I last saw it as a freshman in college. I have phone alarms for meds. Meds sorted and labeled for each day, each dose. Now I always know if I have taken them. No overdoses or skipped doses. That, I think, must be the only reason I remember to eat. I have to eat will pill or they come painfully back up. 

Anyway, 

It has been a year since I had a name for my enemy. A year since I had an inkling of the challenge I had ahead. Sometimes I still feel like I have no idea. I probably don't; I haven't started proper treatment yet. I am told after a few months in little things start to disappear. Little joints don't hurt as bad. Stairs become easier. I can handle the pain. I'm a pro at pain. I have refused pain killers for so long, not wanting to mask something important if an acute problem occurs. I am looking forward to remembering how I spend my day. Remembering friends' names. (Without cheating by checking on Facebook.) Applying for grad school and knowing I will be able to go. And working. Oh, how I cannot wait to work!

The reason I was able to identify what I had was in part due to Facebook status updates of a friend. She and I met 3 years before. She and I both had similar symptoms and similar, but not identical diagnosis. We had both been sick for as long as we could remember, but were trudging through determined to achieve our dreams. Each day she posted symptoms of Lyme. I had been in bed for 2 and a half weeks. On May 10th, I messaged her. "I think I have Lyme." Her response was so loving. She knew that I had it. She also knew that I was still holding on to the security blanket. I had my diagnoses. Neurocardiogenic Syncope. Veso-vegal Syncope. Postural Orthostatic Tachycardia Syndrome or POTS. Fibromyalgia. Chronic Fatigue (but not Syndrome because it had a known cause, the FM, and CFS isn't CFS when you know what causes it. All of these things are not diseases. They are symptoms of SOMETHING. It isn't always Lyme. Sometimes it's due to a chemical absorbed or breathed. Sometimes it's other bacterium. 

My goal for May: to continue my blog as often as possible. Though, with two days of traveling to the LLMD and treatment beginning, I might find it difficult. There are somewhere around 300 symptoms of Lyme. I will attempt to post 10 each day. I will notate which ones I have had, currently suffer from, and have  yet to or never experienced. Please, if you know someone who fits into any number of the sxs I post, have them watch "Under Our Skin". And as always I am here to answer questions. Even if that question comes in the form of the scared statement, "I think I have Lyme." There is so much information out there and so much wrong information. It takes some time to figure it all out. At the very least, it take someone pointing you in the correction direction. 

Sunday, April 28, 2013

Head On


Rant warning.

I hate those Facebook posts that are vague, but dripping with hurt caused by another. A friend and I recently discussed this over brunch. How many people really, I mean, really, actually care that you have been jilted by a new or old lover or friend? Probably the people who you should be calling to help you through the pain. The public post is for attention. A negative attention. A plea for pity. Or a jab at the individual who caused said pain. The following is a request for anything but. This blog is to show the path that someone with similar infections might endure. It is to help people understand that they are not alone in their suffering. To show family members that the one they love is not alone. To those who use this blog as a source of gossip, shame on you. 

In Lyme land, many have formed a community with other sick people and claim that the outside, well people just can't understand, so some have stopped trying to explain, illustrate, and discuss the realities of this disease. I have un-friended many who stopped asking to my face and accusing behind my back. I mourned the loss of many I called friends. I have moved on from that loss, but there is still a problem to be addressed. I know it is common for chronically ill persons, which is partially why I write this today. 

As this is a blog and unlike Facebook, is meant to be public, I invite those who distrust my illness and who's accusations have been kept behind my back to talk to me. I don't mean that I want to have a nasty little fight over grammar in the comment section. I mean call me. Come to my house. See me sick. See me tremor. Tell me to my face that this is a "choice" to get my way, to "get" a boy, to whatever else you have decided I want without speaking to me.

If your ears are burning, you are likely guilty. Maybe not to harming me personally, but by choosing gossip over discussion with the person/source/center of said action. People with invisible illness are forced to deal with this constantly. "Friends" who suddenly disappear from our immediate worlds, only to surface and cause drama a degree away. 

My "way" is not to suffer daily. My "way" is to choose where my life goes, not to fight to hold on to it daily. I am an artist. My "way" is to work. Hard. I love my work. To accuse me of anything else is to deny my identity. So man up. Put on you big girl panties. Stop the childish gossip. Deal with reality. Do not crucify someone who cares enough to help. Doing so denies them respect for their choices and values and this is not an action an adult takes. 

Now, I know that posting this will likely draw some reaction such as, "Well, why doesn't she just come to us?"  Well, aside from the fact that in mourning the loss of a false friendship, I deleted contact info and un-friended those people who I felt were destructive and counterproductive to my healing, this post is not for or to one particular person. (Though, if you think I wrote this to you, PM me if you like.) Many who deal with Lyme feel alienated by friends people who only care conditionally. I want them to see that, sadly, this is normal. Many people can't process how bad this disease truly is. Before you leave a friend or family member or partner who is sick, whether or not you believe them, be an adult and talk to them. Open your eyes. Let them feel safe enough to let you see the symptoms. Some of us can hide them for varying amounts of time. Which, I will admit, is confusing. We can pretend to be normal for a bit, but when the symptoms overcome our will, they are worse for doing so. I mean, higher pain, more severe jerking, higher anxiety. 

If you are to scared to have this conversation, fine. That is ok. Fear is normal. Gossip is juvenile. Choose to grow up, not for me, for your own sake. Watch "Under Our Skin". I will gladly let anyone ask any question you have about my daily fights. For example, it just took me 2 hours to figure out that I need to eat dinner (with a text reminder) and now the idea of physically swallowing food and pills seems a task insurmountable. It is highly probable that my dinner will be liquid again tonight. Leaving me with mostly liquid diet again for the day. 

Know this: Lyme will not win. People will not bring me down.I will not let people cause me to doubt myself. I will continue to grow. I will face life and Lyme and pain head on. When I am done with this war, with the help from as many are willing to give it, I will kick life's ass. And enjoying that life with those friends will be sweeter than anything. I will be what I dream of every day while I am stuck in bed. With every pill I choke down and keep down is another skirmish won. 

Monday, April 22, 2013

Neuro Lyme Hell

I can't even begin to describe the hell of the last few days to you all. What I wrote on Wednesday should have tipped me off that my neuro was going way south. Well, for next time. I am so desperate for treatment to start and detox to continue. I recently awoke from an evening nap. I think it was induced by seizure tremor meds and just the sheer amount of pain I was trying to deal with. I hate losing a weekday. It means losing opportunities to call the people to fight for my aid. I am trying to remember today. It is a huge painful messy haze. Somewhere around 2 am, I think, I realized that for whatever reason, I must be too toxic. I am, but that's beside the point right now. The point now is that I crawled into the bathroom to set up a detox bath complete with shoving the shower chair on to the floor and dropping the measuring cups repeatedly. My roommate came in at some point around 5 inches of water in the tub. (Like my time measurement skills?) He miraculously got me out of the tub and back to bed. I think somewhere around 8 I woke up terrified. (Note that Mondays are his days off and he is in no way a slacker.) I found him next to me ready to field the symptoms. I think he had fallen asleep trying to calm me down after my detox attempt. Upon waking him, he returned to his room and my... you pick the word: fears, anxieties, hallucinations, continued to scare the crap out of me. I was screaming in terror. Somehow he got me into his room and got me back to sleep (read, he would rather help me sleep on a bed he is most comfortable on). All in all, I am not sure how much sleep either of us actually got last night. (If you know Sam, give him a hug. He really really is a wonderful human being and deserves some recognition. And a break so if you want to let him have a night off, come over and Netflix with me or something. I promise not all days are like the one I just had.)

The rest of my day was spend crying in pain, trying to crawl to food, meds, and God knows what. I often get only a few feet before I completely shut down in pain and my tremors begin. I hit my head several times today and am still fighting a headache. If Sam is home, he holds my head to keep me from concussing. Once the tremors end, he dead-lifts me back to my bed. (I mean, really, the man deserves a gold medal.) There is evidence of tremors in my evening nap in the form of sore arms, like I did curling exercises, and a neck that feels like I was in a mild car crash. Most of my day can not be remembered, only pieced together by new bruises and muscle pain. 

And with that I can feel my mind melting again. I need to go to bed. With any hope, tomorrow I will be slightly functional and suffer less pain. Thanks so much to all those who have been spreading the word and helping with the fundraising. I wish I could express just how much it means to me that you all are helping me fight for my life. Good night, All!

Wednesday, April 17, 2013

Stream of Consciousness

My brain is right on the edge of being able to function and just being useless much. Join me if you please, on a trip down the stream of my consciousness. And if not, feel free to come back tomorrow. :)

It is raining. I love it. I want to sit outside, but I think it's too cold. This apartment is a mess. Between Sam getting all of his taxes together on his first day off in months, which also happened to be tax day, and he still had to work that evening, and me trying to keep all the Medicaid/Food Stamp stuff in order and my filing cabinet being in the garage. I wish I could have it. I feel so lost and unorganized without it. But we didn't know how long I would be living her so it stayed on the ground level with all my files and loved prompt books. 
If I take a nap with my head on the dining room table will I wake up in more pain? It reminds me of school. Trying not to pass out during lessons and hoping the professor didn't think me uninterested. Oh man. I wish I could go back to school. I miss homework. Yup. I do. Does that make me sick? I mean like not Lyme crazy, but real healthy person crazy. All I want to do is get well enough to go to grad school so I can be a kick ass stage manager. Ok, what do I need to do today to make sure that happens? uh.... meds? 49 min until the next dose. I so want to live without clutter in my life. This mess is stressing me out. I should eat. Doc said to gain fat. But I supposed I should wait til the dose to eat. Don't want to waste the force feeding session.

The meds to keep me from tremoring are really helping. It's so nice. I haven't punched myself in the face in my sleep since...2 days ago for a while. 

I miss my label maker and filing cabinet. I am such a nerd. I wish I had a show to do. I would be all over those problem lists and plots. 

Well, I am going to spend the next 43 minutes waiting for lunch by calling a doctor's billing office and disputing incorrect bills. Then maybe I will rest before I pass out and have tremors. I hope you all are having a happy Wednesday... It is Wednesday right?

Tuesday, April 16, 2013

Whew, the hits just keep coming.

Payment plans on old medical/living expenses debt were supposed to be one number, but first thing this morning I get a phone call that they are going up by ~$80 each month. I could barely make the original to begin with. 

It broke me. I completely collapsed. I felt like no matter what I do, I can't stop drowning. The only option I felt was suicide. I felt like Lyme and the expenses had won. Please know that I share this not to beg for unhealthy attention or to cause drama, but to allow for the larger community to understand why so many Lyme deaths are suicide. And to let other Lymies know that we all go through it. Luckily, I have my 3 people who pull me back up. Even if it is just treading water with them holding me up the whole time. I am still here. If you have Lyme, you likely have depression and suicidal thoughts; please have a way to get help, people to call on speed dial or a compassionate ear line number. If you love someone with Lyme, please take the time to understand that they aren't whining for the sake of whining or causing drama for drama sake. They truly are suffering and need a bit of extra love. It took me 4 hours, 3 friends, "manic" organizing of paperwork (my full time "job" is taking pills and knowing what letter is where and what it reads, oh and staying alive, that too ;) ) And my constant question I ask myself and anyone else who complains shares unfortune, "Ok, Eb, now what are you going to do about it?" 

So I search for fundraising opportunities. I call drug companies to see about hardship programs. And I wait. I wait for the work to pay off. I plead with the universe to give me a break so I can focus my energy on healing and nothing else. I race my body to get done what I can before the disease becomes too active for me to do anything. That will mean no more walking, but crawling or, as Sam says, "zombie walk", and tremors and seizure like symptoms and dementia. I can feel it now. I have about another hour. Sam was going to take me to get food. I hope I can make it.   

If you read yesterday, you know about my troubles with the Food Stamps/ Medicaid lady. I dropped off all the newly required paperwork that I mentioned and when we got home, I had a notice in the mailbox to bring them in. Bam! Done! Not that that means that I am approved or anything, but it was nice to have something done. I will find out tomorrow or the day after if I will have a lawyer represent me for the Food stamps. 


Monday, April 15, 2013

Just keep swimming, swimming, swimming

I am back at the fight. I had some pretty hard times this week. I haven't given up. Though that reminds me I need to take my meds. I am looking forward to getting a second appointment with my LLMD in 3 weeks. This time I am taking one of my besties with me. She also is very sick with Lyme and Company. I am really hoping that this is the path to health for both of us. We found each other on a Facebook Lyme group. Some days we have fun Skyping and such, and other days it's one of us holding the other up. When it gets really bad, it's both of us somehow encouraging each other and trying to believe our own words. 
(1/10 pills down)

I think part of the reason I have been so bad lately is the weather. Midwest weather is never stable. Each front that come in I can feel for days as it makes it way to us. 

This week on the war front:

I lost my food stamps, for no reason. I have spoken to a lawyer. And reapplied. Consensus among those with any ounce of sanity cannot figure out why. So I will be fighting that again. I will know by Thursday if the firm will take my case. They also said they cannot understand why my Medicaid hasn't gone through yet despite the fact that the US Government says I am disabled. (2/10 pills down)

The Medicaid thing, I think has to do with a clerk who doesn't like that I am young and asking for help. She is always rude to me and each week sends me notices that I have not provided enough information. This week I had to, by the dollar, illustrate where each from my back-pay was spent. Guess where. Meds, doctors, old med bills, old living expenses, and a giant lawyer fee to get SSDI approved. I really feel like she is trying to prolong a process that shouldn't be. Also she lied and told me I didn't have to worry about losing my food stamps after she had already officially closed my food stamp case. 
But like a good girl, I suffered through the heavy physical pain and went through every single expenditure I had after I got awarded and accounted for all of it. I find myself very anxious about the next curve ball she will send. (Though, I used to be a kick ass goalkeeper so I am sure I'll take care of it.)

I am trying to get on the hardship programs with pharmaceutical companies. I have been playing phone tag for days. This is particularly tough as I have not yet learned what new prescriptions I will be on after the upcoming trip. Maybe I am jumping the gun here, but I would rather know who to call with the script in hand than stand there and not be able to fill it. 

I went to the eye doctor because I keep getting headaches after 30 or so minutes of reading/writing. My eyes are fine. He thinks, and this is a shocker, that it is neurological. Basically, when you focus on something close to you your eyes point together. When I get tired, my Lyme infected brain forgets how to do that and I start seeing double. Me being me, I over work my muscles to counter the neurological exhaustion and then get headaches. So to recap. Eyes are 20/20, still might need glasses. I will go back in a month and do a test where they have me read for an hour and then put prisms in lenses to make my eyes focus so I won't get as tired to see for sure. But overuse of these can cause my brain to forget the skill on its own so I am undecided about it. 

(6/10 pills down)
Whew, baby. Why is taking meds such a process? I feel like it should be simple. Oh right, that whole my body hates everything thing. The last 4 are staring at me taunting me like that last shot of something disgusting your college friends want you to consume with them. But taking the last 4 means that I start the timer for 2 hours and I have to do it again. I want to quit*. I want to be well. "Stop whining, no pain no gain!" Maybe I spent to much time as a child athlete. Maybe not. Maybe that's why I can still keep going. Ok doin it! 
*quit fighting everything, not quit life

10/10! 
Please tune in in 2 hours to see what happens next. Will Erin be able to take her meds? or will some random force suddenly heal her off all bacteria?! *Spoiler Alert* I'll unenthusiastically and anticlimatically take the pills. 

Ok, and for my least favorite part, even more than taking the pills (I KNOW! Right?) It's time I ask for help again. I am needing to raise about $7,000 in the next month. So please know that if I had any other option, I would do that. My dear friend is actually running this and when bill are due will pay them from the fundraiser account. Rest assured, each dollar and penny will go to a doctor, pharmacist or something else directly related to keeping me alive. This actually allows for 100% to go to those bills. On the fundraiser sites, I took a cut. So here is my plea: If you can give $10 or more please do. And please spread the word. If you tell someone, "Hey, I know this really groovy chick who could really really use your help, here is her site please consider giving and sharing," maybe we can make this happen. I am not sure if you can pm me from the blog, maybe just on google+, but if they have any questions about how it works or the validity of the fundraiser, I will glady answer them.  
A quick illustration why getting the word out is important:
If the average donation is $10, to reach my $7,000 goal, I would need 700 people to donate.
If the average donation is $15, to reach my $7,000 goal, I would need 467 people to donate.
If the average donation is $20, to reach my $7,000 goal, I would need 350 people to donate.

So the more people that know and help, the easier it is on everyone's wallets. Please, please help me fight for my life. 

Friday, April 12, 2013

Abuse

This illness is horrible.
People take it as a pass to treat you like crap. 
I have been slung around by the forces that are meant to help. With anxiety already a symptom, adding fear of paying for food, meds, and shelter to the mix can only be described as abuse. 

I don't have anything good to say today. There is nothing good in my head. All I feel is that society has labeled my life "not worth the money to save."



Tuesday, April 9, 2013

ER visit number... x

If you are friends with me on Facebook, you may have seen that I went into the ER last night. I arrived around 8. I had spend the previous 3 or so hours doubled over and whining/crying. That weird mix that happens when you fight the tears. My LLMD told me he was worried about my appendix. If I was doubled over in pain to go to an ER and demand a surgeon feel my guts. 




Well by about 11, I had a room. And a 3rd year med student who was baffled that I refused pain meds when I was still doubled over. By doubled over, I mean curled up in a ball on the stupid foam bed. He wanted to give me something for the nausea. Knowing that was a side effect of the pain, I refused. I told him that I wanted to know what I felt while being examined. He left to get his "boss".  I know I didn't go to med school, but has our complete system become a throw-a-drug-at-it-and-send-you-home? When did they stop teaching med students to look for the cause? 

I was home by 3. AM. No blood work done. No CT. Just an ultra sound. And finally a referral to an internist (important for more referrals to an audiologist and a few others) and a GI. They are convinced its a GI issue. It might be, but I think they are trying to scare me from continuing to seek the route of my appendix by throwing the idea of unpleasant procedures at me. I will wait and see what the LLMD has to say first. 

It's just so incredibly frustrating not being able to say, "Oh this rash, yeah that's from Lyme and Cos, not really the thing to focus on so please find out what is happening in my gut." The moment you say the L word you are discounted as crazy. Really, it's not the doctors fault, that's what they are taught. But at what point did doctors stop being curious about causes and only wanting to put band-aids on pain and other symptoms. It doesn't help fix the problem. I almost never take pain pills. I have a script for all of them. I hate the way they make me feel. I would rather feel the pain and know where a problem is then be numb to the pain and everything else in my world. 


This morning, I am doing the same pill routine and the pain has either decreased or I have grown numb to it. This afternoon I am getting my hair cut off. Shorter than ever before. I am kind of excited. Fixing it takes up so much energy and my shoulders can only handle so much. Maybe I will post some pictures. We will have to see if I love it. 

Monday, April 8, 2013

Breakfast

Yesterday I set out to write a post about getting moving in the morning. I just finished it. 

This is what my Sunday morning looked like. I barely got it all together before getting back into bed. (I am loving my lap desk by the way.) I made it just in time. While trying to drink the juice I could barely hold my head up. It took me an hour and a half to choke down the juice and pills. I haven't even been able to touch the muffin. My throat treated the pills like little invaders. I have to let it calm down. 

Good news is that I am in a pretty good mood. Listening to Pandora is usually a toss up for me. Sometimes the playlist is not at all what I want. Today however, it is nearly perfect. 

Usual breakfast. GF strawberry muffin, Naked juice, coffee, pills and a gallon  of  water with which to swallow them. 

I was pretty hopeful that the day would turn out ok. I supposed overall it did. Once I got everything up there downed. It took about 2 hours and and several episodes of passing out later, I had completed the breakfast portion of food and pills. 

Sam and I watched the lasted Doctor Who episode and the two episodes surrounding the regen from 2 into 3. 

Today, though has been more difficult. At 2 pm, I am still working on the my breakfast pills. I called several labs, trying to find the best pricing on the 12 tests my LLMD ordered. And, man, staying alive is costly! I am looking at $1,200 just for the tests. They are necessary. He knows I am working with a limited budget and told me which ones were most necessary. However, getting them all done will allow for a more comprehensive and intelligent treatment. After I learned the cost for just the tests, I cried for 2 hours. Still don't know what I am going to do to get the tests. I hope the fundraising picks up. 

Friday, April 5, 2013

Advice

A bit of a warning:
Many doctor's claim to know about Lyme and willing to treat it. Here are some warning signs that you won't heal with them.

  • Refuse to treat co infections at the same time for whatever reason
  • Sell you supplements out of their office promising that you can't get them online for cheaper
  • Pull your partner/caretaker aside, and say that this is too bad/ you're too sick to have lyme.
  • If they are a specialist in any other area. Remember that episode of House where he tells Wilson something like, "You're an oncologist; of course you see cancer." An allergist will test for allergies. A Rhumie will test for arthritis. A neurologist will see MS, ALS, Parkinson's etc. 
    • Disclaimer: Some are willing to learn and help through treatment, but without being a specialist with this so intricate and unique disease, it will be impossible for them to learn fast enough to be the primary doctor in your fight against Lyme and friends. Think about if you are the Commander in Chief and you have a bunch of Generals who had only played risk. Would you win that war?  
  • You get worse and not just Herx-y worse.
    • This can also happen with an LLMD. If this is the case you need to be checked for a genetic mutation that makes detoxing damn near impossible. 
  • They back-peddle and say maybe it's not Lyme, but likely depression/anxiety and Fibro or and of the ones listed above. 
The truth is that in this fight, we have to be so incredibly proactive for ourselves. I know when lifting your head seems like you are running a marathon that the previous sentence seems impossible. But we are in the fight for our lives; why would we hand the reigns over to someone else. Find allies. Definitely. And when you are billed unjustly, fight it! 

Keep all paperwork! Every little piece of everything every doctor, every nurse, every pharmacy, every Social Security department gives you. Believe me; I know it's a bunch to handle. I have piles all around my apartment. But when you win that dispute or case and it saves you even 50 bucks, that 50 bucks might buy you a few prescriptions that you would have otherwise had to beg for someone else to pay. 

I know the anxiety will tell you just to pay the bill and let it go. But we can't afford to be taken advantage of in any way. 

In fact, I will be filing a report today because of basic bullying by a SSA worker who doesn't think that I am sick, I assume, unless she speaks to all humans with disgust. She speaks to me with zero respect and complete disbelief. I think this is because the first time she called I was having severe neuro symptoms. I told her so. I told her I couldn't retain what she was saying and could she please email me. She scoffed and I explained that my brain wouldn't let me have a proper, reliable conversation. She laughed. 
Since then she snaps at me or just won't return my calls. My life- accessibly to medical care and food is in her hands. Or maybe, dealing with the doctors' bills will be enough for my body today. I might deal with her tomorrow. I still have to set up my pill dose bags for the next 7 days. 

On a completely separate note, I am so very grateful that spring might actually be coming. Yay!

Wednesday, April 3, 2013

Gaining strength

I have been off of antibiotics for 3 weeks now. My sleep is steadily getting better; more and larger segments at a time. I even had a dream last night that wasn't a nightmare. This is huge! I have only had nightmares for months.

As far as pills go, I am getting all of what I need down (by all, I mean what I could afford). Still having a hard time eating and I fear that instead of gaining weight, I am still losing it. My next LLMD appointment is in 1 month. I hope I will have build up by strength by then to start treating co's. 

Right now I would say the hardest physical battles are weakness and lack of appetite. I am still passing out and tremoring, just not as much. Emotionally, I fear being able to pay for the meds and other bills. I panic that people whom I love misinterpret my actions as aggressive or unfriendly. I know that sometimes I am those things, but I am learning to recognize them as symptoms and separate them from me, myself, my identity, and then it becomes easier to catch before they come out. Also, I have been threatened by letters from the state day after day about losing my food stamps and not qualifying for Medicaid. 

For the record, after about 2 weeks of fighting, I will still be able to get food. Medicaid is still pending.

The stresses of managing the assistance to just stay alive, not even treating, are pushing me to my limits. I have broken down crying many times over the last few weeks. It makes the symptoms so much harder to deal with. I long for the day when all I have to do is treatment even though I know that will be hell, it will at least be noticeable progress. 

Tuesday, April 2, 2013

Blog is back. Please check out the new Fundraising tab.

Ok so looong story, but due to how the fundraiser was set up, it qualified as income. I will be removing ending the page and adding something on here. That one will have a direct Paypal. This Paypal will be used to directly pay doctors and pharmacies. As a separate account from anything that might be considered my income. If you want to directly pay for some particular bill or medical debt, my costs will be posted and you may message me with your intent and we may proceed from there. Thank you all for your support!

Also, if you want to help but cannot financially assist, I have a list of people willing to run me to and from doctors and other errands. Please let me know if you want to be added.  This evening I will be moving the full fundraiser and info over to this blog page. 

Also, (again) if you live too far away to schlep me around, but want to help, feel free to text, email, or call. I have felt very isolated recently and your love would be very welcomed. 

Love and Peace to each of you!
E