Sunday, March 6, 2011


Everything is on hold indefinitely.  I can barely move. :(  I'm so sorry, but I can't.

Tuesday, February 22, 2011

My story

Hello everyone!  Yes, I am alive.  I have had a very trying last two weeks--I almost went to the hospital after I had cavities filled.  (If you have Lyme, be very careful about dental appointments!  Some can flood more bacteria into your body, like mine did!)  I am upping antibiotic dosages and that has taken its toll as well.  I haven't talked about this on this blog, but I am a member of Lyme Action PA, which is an action group for Lyme rights in Pennsylvania.  I am also the leader of LymeYOUTH, a small newly founded wing of the organization.  This has kept me busy.  Basically, I cut myself too thin: I needed a lot of rest with this disease.  So sadly, I haven't been able to update this blog like I would have liked to do.  Apologies to all!  I also haven't sent any cranes or checked the e-mail.  However, I do have something to post.  For LymeYOUTH, I wrote up my story.  I hope that it will help somebody, or help somebody without Lyme understand the situation better.  So I will post it here.  Hopefully, a crane post soon, but at this point, I can't promise anything!

When the doctors first told me that I was negative for Lyme disease, I was not too surprised.  “Oh, what a big shock!” I thought, “Doesn't Lyme attack your joints?  Well I'm dying over here!”  I was one of the countless Pennsylvania residents dangerously misinformed about Lyme disease.  Unfortunately, I was also one of the Pennsylvania residents infected with Lyme disease, and one of the fifty percent of people who test negative on the ELISA, a standard screening test.

In May of 2010, I was working full time and planning for graduate school.  Never a very healthy person, I tired easily, was spacey, had joint problems, and had been through health problems before.  When I was a child I became very ill, and my mother repeatedly took me to the doctor.  The doctor diagnosed me with a cold, to a flu, to asthma, assuring my mother I was fine.  I tired easier than other children, and often felt dizzy.

I would have episodes of fatigue, when I could not walk more than a few feet and would cough continually.  One day I had one of my episode wheres I was severely ill, and my mother, filled with “mother rage,” practically carried me into the doctor's office unannounced.  The nurses quickly put me in a wheelchair.

When they wheeled me into my doctor's office the final time, the doctor diagnosed me with pneumonia, and sent me to the hospital.  After a few days of IV antibiotics, I was walking around again, and they sent me home.  Soon I was diagnosed with Attention Deficit Disorder.  I had always been a remarkably spacey child, but everyone assumed that was just how I was.  In college, I would have episodes of fatigue and flu-like symptoms so severe baffled doctors diagnosed me with Chronic Fatigue Syndrome.  They did not know what else to do.

However, I was functional (more than that, I was a workaholic) until I got a mysterious red rash with a dot in the middle of it in 2010.  Contrary to popular opinion, I am not a hypochondriac, so I ignored it.  I had seen Lyme rashes in pictures before—the notorious bulls-eye rash—and it did not look like one of those.  So I shrugged it off, and, in fact, forgot about it for awhile.

One month later I was volunteering at a shelter, and I encountered a woman who had Strep Throat.  A day or too later, I fell ill with what seemed like a bad flu.  Then neurological problems began.  I found it hard to walk, hard to think, hard to remember what I had been doing the day before.  The sickness grew daily, and on my birthday I was nearly too sick to sit up and eat pizza with my family.  I was floored, and baffled that “Strep Throat” could do that to somebody.  Doctors gave me a fourteen day supply of a simple antibiotic, without doing any testing, which I began to take.  I got much worse in a day or two, and after backing my car into a pole and being unable to find my way in a grocery store, I checked myself into the hospital.

I struggled to walk—it was like my legs just wouldn't move.  The doctors at the hospital thought I had Multiple Sclerosis, so they gave me two MRIs and a Spinal Tap, all of which came back negative.  As negative tests poured in over three days, the doctors grew baffled.  During my hospital stay, a symptom that would stay with me for months appeared: intense leg pain, only removed by morphine.  Stumped, one of the doctors decided I was psychosomatic.  Another noticed I had fluctuating blood pressure and told me to eat more salt.

They sent me home with an appointment with a Rheumatologist because of a low positive ANA titer.  She decided I had Fibromyalgia.  At this point I was dealing with frightening neuropsychiatric problems.  I am a calm, rational and friendly person most of the time, and am good at keeping my temper.  But now I was snapping at people: I snapped at her, and then burst into hysterical tears.  I could not understand what a disorder associated with widespread pain had to do with my neurological problems and trouble walking.  I also could not understand why I had reacted so rudely.  My irritation was understandable, but the way I responded was completely different than my usual personality.  I was ashamed months later.  Now I realize that is normal for people with the level of infection I had in my brain.

After this, I seemed to get better: another sign of Lyme disease, though at that point I'd checked that off the list.  My tests had been negative, right?  Seeming “cured” and feeling foolish, I decided to go on a planned trip to Peru with my mother.  At first, I was fine.  But in the last few days of the trip, my illness exploded on me.  Feeling sicker and sicker, I tried to push on and ignore my body.  We went into an underground Spanish burial chamber, filled with skulls.  And it was there I felt all my energy drain from me.  I thought for sure I was going to die.  I had a thousand flues inside my body at once, at least, it seemed like that.  I could not stand in the line to go home at the airport.  I could not eat.  I had never and I have never felt so sick in my entire life.

Going back to our car on a bus, I prayed that I would die.  I kept thinking any second I was going to die, but it did not happen, and at the time I was mad about that.  The next day I woke up coughing up pieces of black “stuff.”  By the end of the day, I lay in bed barely conscious, unable to talk.  Worried, we finally went back to the emergency room, where doctors told us they'd tested me for everything that could “kill me that night,” and sent me home.  I now know that is not true: they did not test me for a deadly co-infection that I had in my body, and now, still do.

Regardless of whether or not the hospital had been helpful, I soon received a 30,000 dollar bill.  I had fallen in-between coverage gaps: My coverage stopped after college and was supposed to resume soon after, when I went to graduate school.  I had thought nothing would happen in such short a time, but I was wrong.  Horrified, I watched helplessly as more bills came in from doctors working at the hospital, my primary doctor, and testing facilities.  Luckily for me, I qualified for medical assistance.  My job only paid $10 an hour, and I had no benefits.  Countless families, however, don't qualify or their insurance does not pay.  For them Lyme disease becomes even more a financial burden than it has for my family.

After this, I got better, but never as better as I had been before.  This was a cycle: I would get ill, and then I would improve, but never to the same level as before.  Every time, I would come out of it worse.  Being the type of person I am, I decided if my illness was progressive, I had to go to graduate school anyway.  This was crazy logic, but I was, as most people who become chronically ill are, afraid to lose my life as I had planned it.

And so I went to a statistics class I needed with my new cane, sometimes so out of it I could not understand my teachers speech, or so sick I would lay in the grass after class, too afraid to drive home.  One time, I went to class with my friend's mother's oxygen on, because I literally could not breathe.  My doctor had told me I was “having panic attacks.”  We now know two co-infections I have cause severe air hunger.

An A- in Statistics heightened my confidence that I could do graduate school, and so I moved to Pittsburgh in Fall of 2010.  At this point, I suspected Lyme thanks to the prompting of a close friend who has Lyme and had been through negative tests and disparaging doctors before.  I had a positive Tilt Table Test, which revealed my dizziness and heart problems had to do with autonomic dysfunction, probably caused by Lyme.  I found a new primary doctor, who believed that I was ill.  She was a great blessing.

I also went to go see an Infectious Disease doctor, who diagnosed me with Chronic Fatigue Syndrome after briefly examining my long list of ills: chills, sensations in my skin, losing time, fatigue, joint pain, muscle pain, weakness, confusion, dizziness, tremors, twitching, flu-like feeling, trouble walking, balancing problems—the list went on and on.  When I brought up my concern about Lyme disease, he told me I “had all the symptoms of late stage Lyme,” but it was “impossible” that I had it.  Then I went to see a “Chronic Fatigue Syndrome Specialist,” who was unhelpful.

One day, I became confused after an eye exam, and wandered the hospital in a daze.  After an hour or two of this bafflement, I went to the emergency room, where they blamed my problems on, again, psychiatric causes.  They also asked me if I planned to kill myself and told me I had a “nice Lyme story.”  When they sent a counselor to talk to me, he decided I was telling the truth and got them to prescribe me twenty-eight days of antibiotics—the most stringent  treatment for Lyme, and not enough (even by those standards) for late stage.

Fed up, my mother and I made a journey we'd scheduled a month before to see an LLMD, who clinically diagnosed me with Lyme and put me on Doxycycline.  But the treatment was too much, too fast, and I became bedridden, unable to go into my kitchen for food.  I had to stop the treatment until I went on medical leave and moved home, which I'd already been planning to do.  I had been unable to start my internship because of my illness, not only because it made me too fatigued and ill to go to it.

My severe brain fog caused a funny symptom: I repeatedly mixed up Tuesday and Thursday.  Regrettably, my interview was on Tuesday, not Thursday.  Oh, and my resume had my old phone number on it: something that I never would have made a mistake on before my illness.  When this was fixed, I received a scathing call from my potential field instructor.  I was humiliated, and sure that I would never get the position.  I would have tried for another, but decided I could not, in my state, manage something so complicated.

This was a good decision, because I got worse.  By the last two weeks of school, I was not sure if I could make it.  Perfect attendance girl began to miss classes, fall asleep in classes, and not understand what was going on in classes.  At the last session of my favorite class, I was too confused to give a decent presentation.  I, who loved debating like nothing else, could not do it anymore.  I seemed to fall into, “I am so confused” every time.

My last weekend was a horror: my lower spinal cord became inflamed, and I could barely stand.  I started having full body seizures and dystonia.  Housebound for three days before finals, I wrote to ask my teacher if I could take the test at home.  No, she said sympathetically, and so I dragged myself to class.  In the final, I started having episodes of dystonia.  I was the last one to leave, because I wasn't even sure what I was writing.  When it was all over, and I got my hard-earned 3.93 GPA, I wondered what on earth I had been trying to do, or prove.

Returning home with my mother's help, I took up residency in my old bed and began treatment with a new LLNP, who was careful not to prescribe too much at once.  She ordered extensive tests in January 2011, and I came back CDC positive for Lyme disease by IgG.  I also tested positive for the diseases Babesia, Bartonella, Anaplasmosis, Mycoplasmosis and an active CMV infection.  My doctor believes I have another infection as well: I had four of five bands.  Other tests revealed how completely Lyme had ravaged my body.  After months of fighting to get doctors to believe I was sick, and my own family to believe it was probably Lyme, I could finally stop fighting people and start fighting spirochetes.  For me, and other Lyme patients, positive tests are happy things.

Sadly enough, we are still waiting to hear from the insurance companies about the tests, which were expensive.  Lyme has placed a huge financial burden on our family.  Originally, my workaholic tendencies were enough to help me scrape by in graduate school.  But when I went to school, I was too sick to work, and I had medical expenses not covered by insurance.  Soon I was broke, and the financial burden fell upon my family.  I was rejected for disability, and we are applying for temporary disability now.

Lyme treatment does make you worse before you hopefully get better.  Currently I am weaker, and struggle with simple tasks.  There are days were I do not even go downstairs, and my mother takes me places in a wheelchair when it is necessary.  I am on antibiotics now, and in a few months my doctor plans to put me on IV antibiotics.  I am optimistic about these treatments, and hope they will permit me to go back to school.  I do worry that permanent damage has been done, but I am grateful that now, I have a diagnosis, and doctors who care about me and want me to get better.

Friday, February 4, 2011

#13 Chrissy and #14 Bev

Bev and Chrissy are a mother and daughter from the area who I've come to know, as well as Bev's husband.  Since I became ill, they have been unfathomably kind.  I am one of those people who hates asking for help, but ever since I was forbidden to drive they've driven me places I needed to go.  Somehow they've managed to convince me they're just helping a friend, which is a big accomplished.  I can be stubborn.  I thought of them right away when I was started this blog.  I made these two cranes for them.  Bev's crane is purple!

Bev has had severe Fibromyalgia for years.  Sometimes, she is in so much pain that it is hard for her to move.  She has been instrumental in schooling me about living with chronic illness, and consistently tells me to listen to my body.  I think I have gotten a bit better at that, lately! ;)  I picked this prayer for Bev because she had told me countless times God would work things out.  I found it hard to believe her.  Every time she was right.

God is our hope and strength,
a very present help in trouble.

Therefore will we not fear, though the earth be moved,
and though the hills be carried into the midst of the sea;

Though the waters thereof rage and swell,
and though the mountains shake at the tempest of the same.

There is a river, the streams whereof make glad the city of God,
the holy place of the tabernacle of the Most High.

Chrissy suffers from multiple health problems, including seizures and hearing loss.  Luckily her seizures are under control now, but for awhile she would be rushed to the emergency room more than once a week because she would not stop seizing.  This prayer I thought was perfect for Chrissy.  The reasons why are personal, and I'd prefer to share them just with her.

God, make me brave for life: oh, braver than this.
Let me straighten after pain, as a tree straightens after the rain,
Shining and lovely again.
God, make me brave for life; much braver than this.
As the blown grass lifts, let me rise
From sorrow with quiet eyes,
Knowing Thy way is wise.
God, make me brave, life brings
Such blinding things.
Help me to keep my sight;
Help me to see aright
That out of dark comes light.

I think that public awareness campaigns have made more people accepting of Fibromyalgia, but there is still a distrust of the diagnosis floating out there in the public. If you have a friend or loved one with Fibromyalgia, believe them and support them.  An important part of support with chronically ill people is understanding when they need to cancel on plans.  We're not canceling on you: our disease is!  People with Fibromyalgia are in a lot of pain, and experience brain fog, severe fatigue and other health problems on a daily basis.  Some people are completely disabled from Fibromyalgia.  The National Fibromyalgia Association is a good place to learn more!

I also just have to share some of the hearts I've made for Valentine's day. They're too fun to make.

This disease is bizarre.  Yesterday I lay in bed all day abjectly, terribly ill, and today I feel better than I have in months.  I'm overwhelmed with NOT feeling like death warmed over.  I'm starting a new high dose antibiotic on Monday though, so...we shall see. I also updated my profile, because I just found out about my co-infections.  Exciting times!

Monday, January 31, 2011

V-Day Origami

Apologies, everyone!  I've been so distracted by my Valentine's origami.  :3 I'm making hearts and letters for all my friends, and it's taking me awhile.  But I've also made a lot of cranes, so I should update soon. <3

Thursday, January 20, 2011

Lymies: Cranes #6-12

Somebody on Facebook actually prompted me to update again!  I haven't in awhile, and they told me they liked my blog.  I didn't even know they were on it, so I felt all fuzzy and inspired.

This is a lot of cranes at once.  I asked (quite) awhile ago on an online Lyme disease support group if anybody wanted cranes and prayers made for them, and I was excited when I got seven responses.  Somebody actually told me to make a crane for myself, and they would pray for me, which was one of the sweetest things I've ever heard.  Maybe I will if I don't discover more people to make cranes for, soon.  But for right now, I've stuck with people other than myself.  Again, I don't know the religious affiliations of anyone.  I think I should ask people next time so I can find the most appropriate prayer!

The first person to ask me for a crane was somebody who, at the time, just found out she was pregnant.  Then somebody later chimed in and said that I could use their crane for this person as well.  I ended up making two cranes, one for the baby, and one for his or her mother.  All my cranes for this post are green, except for the baby's, because nobody wants the baby to have Lyme, too!  Mothers with Lyme can pass the disease onto their children. Thus that crane is devoid of green, for good reason. Hopefully, treatment will have made her feel much better, and protected her baby. :)

Please grant this child of ours
a full term of nurture,
the joy and mystery of life,
and the blessing of your love.
Grant us the fulfillment of our dreams,
a baby to cherish and protect,
a child to teach and guide,
a blessing to our family.

The second person to ask said that they could use all the help they could get.  I did not know anything else about them, but I understood that sentiment.  So I made them a crane with this prayer, which I hoped was appropriate!

Let me not pray to be sheltered from dangers
but to be fearless in facing them.

Let me not beg for the stilling of my pain

but for the heart to conquer it.

Then somebody asked for a crane because though they were feeling a bit better, they were still suffering the effects of prolonged and misunderstood illness.  That can be really tough, so I hope they are feeling better now.  Here is their prayer.  It's short, taken from a longer piece, but I thought it was perfect.

Through life's trials and hardships
We can arise beautiful and free. 

Somebody then told me they were very ill, and they weren't sure if they were going to make it.  I was saddened by that.  I hope that now they are doing better--since it's been awhile. :(

Stay on the path if you're suffering
by taking the steps you need to take.
Hang on and hang in there, because it's now
that you're growing at light speed,
You're never going backward only forward.

Finally, somebody asked for cranes for her and her husband, who both have Lyme disease.  They are struggling financially and her husband had two job interviews this month.  She asked if I would pray he would get the job, and I did.  I hope he got one of the jobs he interviewed for!  I made two cranes, one for both of them.

It gets better.
Take my mind off what I know
is too big for me
this thing I always dance around
and never mention.

That's why there is faith.

It's the bridge between
the impossible and the infinite.

Please get me and mine safely across.

I have talked about Lyme disease, and what people can do, multiple times in this blog.  Instead, I'd like to talk about what people can do for everyone living with chronic, misunderstood illness.  Speaking from my personal feelings, the first and most important is to believe in the illness.  I put up with disbelief and condemnation from people who do not understand or assume I am "faking it" far too frequently.  Ignoring them and laughing off hurtful comments can get tiring.  Therefore, supportive friends and family are a safe haven for me.  Just believing that I am really sick is a blessing.  Not knowing what to say, or not knowing the right things to say, are irrelevant to me compared to that.  If you want to learn more about what it's like to be chronically ill, I'd start with The Spoon Theory by Christine Miserandino.  It's a wonderful piece!

In other news, this is my favorite website for finding prayers. It has prayers from all religious traditions, and for nearly every need!  I like to spin the prayer wheel and see what comes up some days.  :)

Now I absolutely have to go.  I may be an insomniac, but my brain is dying, and I must rest it now.  Hopefully there aren't too many errors on this page. ^^;  I shall check it again tomorrow when I can think!

Tuesday, January 11, 2011

Jordan: Crane #5

I was very touched to hear about an LLMD's (Lyme Literate Medical Doctor) daughter Jordan's battle with leukemia.  I'm pretty sure posting his name would be alright, because he appears in Under Our Skin, but I didn't just in case. This is my first entry about somebody I've never met, so I am a bit nervous about it.  I don't have any personal anecdotes to tell you!  I just know she seems like a sweet, strong little girl and her family seems wonderful as well.

This is the crane I made for Jordan.  The crane is yellowish-orange because orange is the ribbon color for leukemia, and the basket is green because green is the color for Lyme disease.  I would not have known to make a crane for her at all without her father's work in Lyme Disease.

I was also not sure what prayer to pick for Jordan, because I was not sure if her family is religious, or what type of religion they are!  Tracing back through my Unitarian upbringing, I found this prayer, which spoke to me and will hopefully speak to Jordan and her family as well.

There is love
Holding me.
There is love
Holding you.
There is love
Holding all.
I rest
In this love.

     -Rebecca Parker, Unitarian Universalist

I have very important, tangible thing that everyone can do for Jordan--really, for countless people who are looking for bone marrow donors.  Jordan's family has requested that anybody who can (which doesn't include Lyme patients or other sickly ones!) register with the National Marrow Donor Program's Be the Match Registry.  Jordan has not found a match yet, so if you would be willing to do that for her, that would be amazing.  Even if you can't be Jordan's match, you could be the match for somebody else.

In short, spare a little room in your thoughts or prayers for Jordan and her family right now.

I actually DO feel a lot better right now.  So maybe more posts soon? Of course that's normal with me though, oh, I feel better now!  Oh, nevermind, I can't get up.  Haha!

Tuesday, January 4, 2011

Starz: Crane #4

I had a false start on that "I feel so much better!" but I seem to be coming round again. Sorry for the long absence! I am okay, at least long enough to make this entry.  Which I am determined to do!  *poses* I always want these posts to be good, or at least better than my personal blog posts.

Every time I talk to Starz (which isn't her real name, by the way) I'm always impressed that she's as hearty as she is.  The woman blogs about how one of her kidneys has died, her cancer is getting bigger, or she needs surgery on an aortic aneurysm, but somehow she still manages to volunteer at a women's shelter, write stories, and offer a kind word to pretty much everyone.  Starz needs your prayers, because she is a wonderful person who has been through a lot of health issues in the last few years.

Here is the crane and basket I made for Starz:

I picked this prayer for her because she already has a good grasp on it!  I almost feel like this prayer is a message from her to others rather than a message to her.  Regardless, here is the prayer I decided on for her:

Life is short and we have not too much time
for gladdening the hearts of those
who are traveling the dark way with us.
Oh, be swift to love! Make haste to be kind.

Starz is a wonderful storyteller, and I'm always impressed with the depth of her tales, most of which are from experiences in her life.  She also writes good short fiction pieces!  At first, I wasn't sure whether to believe them; they were so incredible.  But after I got to know her I knew they were true.  If you heard her stories, you would respect her as much as I do.  But I think her stories are so personal they are only for her to tell.

Starz will be going through surgery soon, so if everyone could keep her in their prayers, that would be wonderful.  She has also lost some people in the recent months, so if you could pray for them and their families, too, that would be a big help.

In addition, if you have the means, please donate to cancer cure research.  Imagine how many lives will be changed or saved when they find the cure  I know that everyone knows about cancer--it's everywhere.  I have relatives who have died of cancer.  I doubt there are many people who don't know somebody who is a survivor, or who has passed away due to the illness.  Even if you can't donate, you can still protect yourself by learning how to reduce your cancer risk.

Starz, I hope you have a wonderful new year, much better than the year before.  Barring that, I wish you happiness in adversity. :)

Finally I haven't sent any cranes yet.  I'm homebound or bedbound most days, and don't drive due to seizures and neuro problems.  So anywhere I want to go I need a ride and a good health day.  Soon I hope I'll be able to go buy some little boxes, and the shipping can start! :)