Thursday, June 27, 2013

What a week!

I have pushed hard the last few days. I am up to my full dosage of Mepron. (Yuck.) Also, I managed to see two musicals in the last 4 days. Music, especially, live/loud is very difficult for me. You know when you go to a big scale concert and you can feel the beat on your chest/breastbone? It is like that, except for me, it feels like it pierces my chest and messes with my organs. It makes my squishy bits hurt. When that happens it becomes extra hard to keep tremors at bay. However, what is the point of fighting for my life if I don't have any living in the meantime? Also, being part of the theatre community, it is important to me to see my friends' work and catch up, no matter how briefly, after the shows. Huge shout out to the casts and crews of Rocky Horror and Death of Cupid! I love that I have talented friends. 

All of that on top of a very upset gallbladder, which is coming out Tuesday morning, has made for an extra painful week. Tuesday night had me crying in the fetal position for over an hour from the abdominal pain alone. Tuesday also brings the potential to have an appendectomy at the same time. My surgeon will be looking around a bit to see why my pain is so widespread in my abdomen. 

Because of the above, it has been extra difficult to eat solid foods. I am only getting about 1 solid meal a day. The rest is from juicing, and I continue to lose weight (not good). And to add to the difficulty of the situation, for Mepron (anti-malarial to kill the babesia) requires a fatty meal in order to be absorbed by the body. Angry gallbladder+fat= a hell of a lot more pain. Screaming out and crying to the universe sort of pain. It makes it hard to even drink water and I have become dehydrated and full of dead bugs I desperately need to get out. It is kind of a difficult thing. Take the meds to kill the bugs, but get too sick to deal with taking care of my body enough to keep from Herxing. 

At the same time, I have to deal with my usual symptoms. My hands and feet... suck. Deep bone pain. My skin burns with any touch. My neuro symptoms are just as exciting as ever! Yesterday, I had a few hours where I could only speak Spanish. I had years studying it and am mostly fluent, depending on symptoms of course. But, the same thing apparently goes for English. 

Saturday, June 22, 2013

The girl who cried Lyme (spoiler: it is still Lyme)

Sam and I were talking the other day about how hard and long this process is and how it feels like I have only just begun. I have been asking for outside help for about 9 months and I feel like, well, I feel guilty. 

I have zero reason to feel that way. I know that. I recognize that only through opening up and accepting vulnerability can I grow and fight this disease. I think maybe that part of the problem last year with disbelief over my situation in others began because I never told anybody just how much, how badly I was suffering. I hit rock bottom. Sometimes literally, passing out on the sidewalk or pretty much any other location while trying to convince myself that I was fine. I was normal. Everyone must hurt, nobody complains though so I wouldn't either. 

Aye, but there is the rub. Not everyone, in fact, most people don't have that kind of suffering. I didn't know that. Now, I'm not sharing this to complain about how bad I have it. I merely wanted to explain what happened. Like a mouse trap, you pull back and hook that metal piece storing the potential energy. That is what I am doing every single time I leave the house looking normal, acting normal, or really any activity. The problem is that before last year, I could control (for the most part) when the trap became triggered releasing the kinetic energy. I would go home, actually pass out, not just fall asleep and tremor, come to crying out in pain etc. 

There are a few options when it come to antibiotics that kill Lyme. One is doxycycline. So when I was working as hard as I could and spending the other 14 hours recuperating and resting to gear up for the next day, I was mostly getting by. But then I got a UTI. I was put on Doxy. I herxed*. I herxed so hard that it became impossible to hide my symptoms and I became more reliant on the people around me for basic things like cooking, cleaning, bathing, and assisting with the fear that came from the dementia. For the first time in my life, I was not only dealing internally with my poor health stealing things from me that I loved, but I couldn't hide it anymore. The trap was triggered and it came down hard. 

I can truly understand the argument of, "well, she was fine until..." or "she looks fine". I am working on figuring out a way to video document some of my worst symptoms. However, that is particularly hard to plan. These days, it is much harder to reset that trap. It takes so much energy to load that spring back. 

So here is where the title of the post comes in: I cried for help a year ago. People get busy. People forget. I do not begrudge them in the least for living their lives. I envy them occasionally, but that is beside the point. Metaphorically, about a year ago, I cried wolf again and again. Now his teeth are deep in my leg. I cannot move forward without help. And I need more help than I ever wanted to admit. I remain hopeful. I know that getting the money to not only provide treatment, but safe and comfortable housing throughout, I will beat this. I will return to health. At this point real health is a dream as I don't actually remember it. My goal is to go on a work trial period in about six months. That may or may not work as I hope, but regardless, it takes about $2,000 a month to keep me moving forward. Much of it I need to raise now in order to secure continued living under a roof and ensure that I can continue killing the bugs (you know how doctors always tell you to not stop the round of antibiotics until the bottle is gone- that's so they don't grow stronger and resistant).

That said, I know many of you have given and shared with your friends, but I am hoping and wishing and praying that crowd-funding will work. There has been a Facebook page created dedicated to updates on my health and the progress of my fundraising. It is called Erin's Army. You can find it here: http://www.facebook.com/ErinsArmy. I wanted my own personal page to be more than just Lyme updates because there is so much more to me than my illness. Please feel free to "like" and share, comment or whatever your heart leads you to do. Maybe there is another layer/ larger circle of individuals who will be willing do help. 



*Herx- imagine the worst flu you have every had, while also being drunk and hung over and are suffering due to a bar fight from the night before that you don't remember. Actually a medical term, short for Jarish-Herxheimer reaction, caused by the dying off of the bacterium. They poison the body after they die. This can cause serious problems with organs that normally rid the body of toxins. Neuro herxing can cause dementia like symptoms and severe tremors and severe mood swings and personality changes. 

Thursday, June 20, 2013

Please help me

I am still very overwhelmed. Pain, pain, pain, and need for more funding has me incredibly stressed. 

All week I have pondered ideas for this post. I fear that I am too stressed about my circumstances to be anything near cheerful or hopeful.

My physical pain has grown. Sometime next week I will be having surgery; the date/time will be set once all my doctors have discussed the issues my body has and an OR opens up. Nothing too serious, but my gallbladder and possibly my appendix will be coming out. That should really help with the daily pain. 

However, that should only relieve my abdominal pain. I will still have to push through the skeletal, muscle, and connective tissue pain. We shall see if it helps in the way of putting down food and meds and keeping them there. 

Pretty much my days this month have consisted of working my butt off to get the care I need. This amount of work actually makes me sicker, but without it then I don't see a healthy future. I FINALLY got my sauna. I will write more on that later, but for now, I will just say that I don't think I would be doing nearly as well as I am without it. Which is insane, because I am so not doing well. Daily, I feel like I might lose this fight or sometimes I feel I have already lost and it is just a matter of time until it actually kills me. Part of this is the never ending excruciating pain. It has made me angry and sad and desperate, with a very very short fuse. 

I finally have nurses coming 3 times a week to check on vitals and do injections. That took a month to get sorted. I *think* I have got my meds to the lowest possible price, but that being said, I dropped 300 bucks this week and still have more to buy. If you feel comfortable, please check out the Fundraiser tab at the top of the page or check out the widget for the GoFundMe site. The tab is connected to Paypal, the site is WePay. That way you have a choice of whichever one you're most comfortable with using. 

Sunday, June 9, 2013

Overwhelmed

There are so many happenings currently. It is definitely enough to exhaust a healthy person. Are you ready?

I got all the Rx's figured out. Because I am out of work and too young to qualify for a sustainable 'income' for SSDI, I think I fall somewhere around 300% below the poverty line. Yup. There is an eye opener, yeah? I qualified for low or no cost to me Rx medicine for most of my scripts. There are some that aren't in the assistance programs that I still have to pay for and of course the supplements to help keep my immune system going and my insides functioning aren't covered. This process has been wildly stressful. It took from the end of April and is still not completely finished. 

My friend is doing a Pampered Chef fundraiser to help pay for the meds. If you go here, and order. 25% of the sales will go directly to paying for my meds. This ends 6/12. So head over there now! :)

I started treatment (for real this time: co-infections before Lyme). Mepron is first. This is an anti-malarial. Babisia is essentially malaria, but it is in North America. And it is a bitch. Once I can handle Mepron twice a day, then I add Zithromax. I will continue until I am up to all the meds needed. But for now, I really need to focus on handling the Mepron. It looks like thick yellow paint that is almost at the end of its usable life. I used to do a fair amount of scenic painting. New paint is more.... the word escapes me... When a paint is about to go bad it gets almost chunky and 'paint boogers' start to form in the can. That is kind of what this med looks like, though mostly chucky; it is still a liquid and very yellow.

It is gross and I have to take it with fat so that it will be absorbed by my body. 
It also makes me hate just about everything in my life. After my first 2 days on it, I got horribly mean and lost all patience for anything. Total rage. Doc wanted me to cut back so I went to night only. I figured if I raged in my sleep, then only my dreams would suffer. Today I started with it in the morning. Hopefully, I will be able to handle it this way. I have been trying very hard to remain calm, but I fear I am failing miserably. I feel like a sick and tired toddler who only wants gentle attention but doesn't know it and is throwing a temper tantrum and won't calm down enough to get what she needs. 


Things that I should accept gracefully, but while I am grateful and say thanks (and am truly thankful), I am so angered that I actually need the help that it is hard to internally accept: 
  • I got my sauna so I can really really begin detoxing. 
  • People from church came over to clean my apartment. 
  • Someone set up Meal Baby for me. 
  • I am set up with Home Hospice care so a nurse will come to my home to help dispense meds and do my injections. (I shake too much sometimes and am worried I will harm myself at some point trying to inject on my own, especially because I don't have a picc line.) 
  • I should be getting a fitted wheelchair this summer! It will be midnight purple, because EMAW!
There are so many other things that I need to take care of before I can really just focus on my healing. I am to have surgery soon, the date to be determined. More info on that next week. 
I just need to wrap up some things with Medicaid paperwork and SSI and other annoying bureaucratic mazes they put up to make sure that the truly sick can't get well soon enough and a well person can navigate easily enough to cheat the system. Though on a positive note, I am getting all the Medicaid help without limit only because of ObamaCare. So right here is one life that law has, and will continue to save. Please, whatever your politics, try to appreciate that. And try to watch yourself when speaking ill of any or everyone on welfare. Without it, I, and many of the people I have come to know, would never be able to return to society as useful members. 



Thursday, June 6, 2013

New Limited Time Fundraiser Sale

Today is hard, but good. One of my friends came over for breakfast. It always makes it easier to have someone around. This last year has been very chaotic for each of us, but we are working on making time for our friendship. This is good. I have needed people to be intentional about coming to me because I cannot go to them. I am an extrovert so I get energy from hanging out with people. On the flip side, I am a Lymie and EVERYTHING is draining. But today, I am good drained. So far anyway. It doesn't really do anything for the physical pain or the nausea, but it does help my mood. 

In case you missed out yesterday, another friend is holding a Pampered Chef Fundraiser for me. Click on the link. Shop for your amazing new kitchen toys. Who are we kidding? We all want all of it. Unless you don't know how to cook, in which case, get some supplies and cookbooks and learn :) This sale only lasts a week so please take a look. Orders must be in by 6/12. She will put 25% of all sales to my medical bills! How amazing is that? Thanks everyone! 

Wednesday, June 5, 2013

Well, so much for accomplishing the full month of May

As this disease has proven time and time again, plans often fall through.

I can't remember the last post I did for Awareness Month. Maybe I will sprinkle the rest throughout the year. In the mean time, I have gotten sicker. I also started and had to back off of the anti-malarials (I will restart after my upcoming surgery.) I barely remember the last couple of weeks. What I do know for sure is that I called, emailed, and faxed my way through to the pharmaceutical companies to receive meds at lower or no cost to me. I have one more left to do, then my treatment will be pretty much covered for a year and then the focus will finally be on just killing the infections and getting well. I cannot wait for this to happen. I am so sick of fighting to be able to fight. It seems as though the fight for the fight is almost done. I really hope this to be the case. 

In the mean time, I have to keep my brain present enough even though the die-off is causing neuro herxing and it makes me seem crazy. Give me all the pain in the world and I can deal with it, but the neuro problems are almost impossible. I become someone else. In the fight or flight, I fight. When I am neuro herxing, I pick fights. Most of the time I don't even remember them later. It is like remembering a movie from your childhood. You remember key visuals or certain sounds, but there is no fluidity or certainty to the accuracy of the memory. This can happen within minutes or days. 

I will be having at least my gall bladder out soon as it is completely disfunctioning and my appendix will hopefully be going with it. I have learned that die off causes toxins (which I knew, and I do the baths and teas) to the extent of shutting down the organs that deal with ridding the body of them. Essentially my gb is filled with toxins so it can't do anything else. 

And, for this week, to help my friend is holding a Pampered Chef Fundraiser on her website for me. We didn't quite reach the May goals to cover treatment; hopefully this will help. Feel free to visit and shop!

Above all, learn to be a self advocate. Hiding the illness will not help you get better. Find jobs you can do without driving yourself into the ground. If you can no longer work, seek out local resources for counseling and case management. No one is going to do the work for you. It is your life you have to save. I have learned that sharing my story and my feelings about my situation ended some relationships, but the people who stepped up to help are true friends even if we don't get to "hang out", I know they love me through and beyond my disease, and after I win this war, I will be able to come through for them when they need me. Frankly I would rather have the friends who face me and my disease without judgement.