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01.26.12

crying on the couch

not good at relationships

but i got josh lynch

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Every day I give myself a shot of Copaxone. I rotate around 7 spots on my body - my hips, thighs, arms and belly. The medicine is given with a small needle and it is supposed to go into the layer of fat just underneath my skin. Copaxone doesn't have very bad side effects, but it does cause swelling at the injection sites- especially in areas with little fat. (I don't have much fat, so cookies are always accepted.) This was a particularly bad day. Giving myself a shot in the belly is kind of like getting a beesting right next to my belly button. It gets and stays swollen, itches, burns and is generally uncomfortable for a few days. Besides the giant red welt, the two lower marks are my appendix scars. All of the other small red spots are injection sites from weeks prior. The meds are supposed to decrease the chances of recurrences and they increase the chances of being mistaken for a heroin addict.

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My Name is Erin and I Have Multiple Sclerosis

To follow the one year anniversary of my week-long hospital stay in 2010, I’m going to answer a question that lots of people have asked me recently and I’ve been hesitant to answer… How’s your brain doing? The answer to that question has been a sore subject and a source of confusion, anger and pain.  The short answer is that my brain isn’t doing that great these days. Here is the long answer…

Upon leaving the hospital in November of 2010, I was given a prescription for some heavy duty steroids to shrink the inflammation in my brain that was causing my mysterious symptoms and armed with a really vague diagnosis of “Tumefactive Mulitple Sclerosis”.  (If you Google it, there’s not much info about it) Basically, it means that I had an area of inflammation in my brain that looked like a tumor (but it wasn’t a tumor) and caused symptoms that were similar to Multiple Sclerosis (but I test negative for every other indicator of MS).  So, I was on those awful steroids for 2 months.  I was a ravenous, hermity, sleep deprived, angry hulk of a woman for remainder of 2010 (a belated thank you to everyone who helped me, hung out with me and fed me).  I had follow up brain MRIs and went to see my neurologist in December and again in March.   Both visits were good, my inflammation was decreasing, my symptoms were starting to go away and my anxiety about the possibility of new inflammation was decreasing.  I was starting to feel good and confident and I had a really good summer. 

In late August, I went back for another follow up MRI.  If you’ve never had a brain MRI, there is a little mirror above your head and you can see out of the tube and see the MRI tech.  Between trying not to cough or wiggle, I noticed that the MRI tech was making concerned faces.  I hoped that he was checking his email or reading something about Michelle Bachman and not looking at pictures of my brain.  As I got up to leave, he patted me on the back and said, “I hope everything works out for you”.  I hope everything works out for you?!??!!!! WHAT!???!?! What am I supposed to do with that?  I was so shocked by that statement and a little overwhelmed from holding in a cough for 45 minutes, that I didn’t have the wherewithal to ask him what the fuck that was supposed to mean.  I went home and most likely cleaned up a disaster that my new puppy had left for me for being gone for 2 hours and eventually forgot about his comment.

Three days later, I went to see my neurologist – actually it was my neurologist’s PA - which made me feel pretty awesome.  I thought, things are so good, I don’t even have to see my neurologist.  Awesome!  Kelly and I talked to the PA for a while about how I’d been feeling, my symptoms had been improving and I had no new ones.  I had been active during the summer and I felt pretty good, but I still tired really easily.  He did some neurologic tests on my, including spelling world backwards, which is harder to do than you think, but I pretty much aced it.  Then he told us he was going to get my MRI, which I thought was odd because they just pull them up on the computer in the room.  He walked out and Kelly and I spent some time making funny faces in the mirror and telling jokes and laughing.  Then with the PA, in walks my neurologist, Dr. Skeen.  He said, “I bet you weren’t expecting to see me”.  True, I just assumed he wasn’t there that day.  But, he had left another patient waiting to come in and tell me that my most recent scans didn’t look very good.  There were 4 new areas of active inflammation.  Since there were multiple spots and new data to work with, he decided to change my diagnosis some weird type of Mulitple Sclerosis.  It was a singular inflammation before, but now there are multiple areas of inflammation.  He told me that he thought that I needed to start taking MS drugs decrease the chances of recurrences.   

I was stunned.  I (surprisingly) didn’t cry.  But, I didn’t know what to say or do.  I had felt pretty good for the past few months, the only problem that had lingered was the fatigue.  But, I felt like I was on the mend.  I was recovering from all of the weird bullshit that my body went through in 2010. I could talk just fine.  I didn’t have any other weird symptoms.  How could this be for real?  As I sat there with my jaw hanging open and feeling like I was about to barf, Kelly went into question mode. He asked lots of questions about MS, medicines, disease management, etc.  Thank god he was there with me, I probably would have barfed if he hadn’t been there.

For the next couple of weeks, I was too stunned and had too much else to focus on to really let the new diagnosis sink in.  We had just found and committed to a puppy, we were buying a house, some of my best friends were getting married, work was busy and we had to pack and move in the coming weeks.  I had no brain space for MS.  The only thoughts I gave to it were very rational ones: things could be much worse, this was manageable, I just needed to buck up and deal with it.

I didn’t tell many people because, more than anything, I didn’t want pity.   I hate being pitied.  I hate being the sick girl.  I’m more than a sick girl… I’m still me. I like bad jokes, bowling, funnel cakes, sack races, and gin based drinks.  Please don’t feel sorry for me.  If you don’t know what to do with me, tell me a joke or offer me a Tom Collins and we are good.  I decided I was going to be really fucking tough.  Tough Erin was here to take care of all this shit. That act worked for about 3 weeks.

The day after we moved, I noticed that the tip of my right index finger was numb.  Then part of my left cheek/nostril went numb.  Shit.  These were symptoms.  I called my neurologist, they put me on some steroids to knock it out.  About a week later, I started taking Copaxone for the MS.  Copaxone is delivered to your body through a daily injection.  Since October 5th, I’ve given myself a shot everyday.  It rotates around from my belly to my arms, to my thighs and to my hips.  It is a small needle and the injection goes just under my skin into the layer of fat between my muscle and my skin.  So, since I don’t have much fat in some of those places, the injections burn then itch like a beesting.  It’s a big pain in the ass.

Around this time, I really fell apart.  Tough Erin packed up and left.  I sat on the couch and cried among all of the boxes that needed to be unpacked.  I did only the minimal amount of work work so that I could carve out plenty of time for wallowing and hiding from the world and sleeping and feeling sorry for myself.  To be honest, Tough Erin hasn’t shown back up since then.  She ran for the hills as soon as the needles and steroids came back.  The Erin that is left, however, is a really good actor and doesn’t let on that she spends a lot of time crying and laying on her couch.  Most of this is due to the fact that I don’t want to be sick and I don’t want to be treated like I’m sick.  I want to feel normal and be treated like I feel normal. 

So, finally, I’ve decided to come clean about my frustrating health situation.  I have MS. I have to give myself a shot every day. I’ve experienced new numbness in my finger and my face. I cry a lot.  And even though I look really healthy, it’s been hard for me to agree when people say, “You look great, you must be feeling so much better.”  My standard response has been “I’m okay.”  I’m sorry that I’ve been too chickenshit to tell the truth about how I feel.   It’s hard to say to someone who is happy to see that I look like my normal self again and not the ‘roided up, chipmunk faced, hulk that I was a few months ago that I actually don’t feel great.  Although I don’t look sick and I don’t feel particularly bad, my finger is still a little numb, I’m tired all the time, I’m scared and angry about my diagnosis, and frankly, I’m really depressed.  

The past couple of months have been difficult.  While MS isn’t a life threatening diagnosis, it is certainly a life changing one.  Transitioning into this new reality is very challenging.  I don’t really know how to do it, but I’m trying. 

In the process coming clean and this transition, I’d like to publicly thank Kelly for being the main witness to my tears, grumpiness, oversleeping and denial.  It’s his fault that I’m writing this.  Thanks for being so awesome and supportive, Kelly.  You are, quite possibly, the best ever.

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Highlights from our Wedding Pageant on November 25th, 2010!

On Thanksgiving, the Kauffman and Davis families came together at Aunt Maude's apartment and we held a brief wedding pageant/re-enactment for our families...

We opened with a passage from an Emma Goldman essay.  Here’s a bit of it:

"Love, the strongest and deepest element in all life, the harbinger of hope, of joy, of ecstasy; love, the defier of all laws, of all conventions; love, the freest, the most powerful moulder of human destiny…

Free love?  As if love is anything but free!  Man has bought brains, but all the millions in the world have failed to buy love.  Man has subdued bodies, but all the power on earth has been unable to subdue love.  Man has conquered whole nations, but all his armies could not conquer love.  Man has chained and fettered the spirit, but he has been utterly helpless before love.  High on a throne, with all the splendor and pomp his gold can command, man is yet poor and desolate, if love passes him by.  And if it stays, the poorest hovel is radiant with warmth, with life and color.  Thus love has the magic power to make of a beggar a king.  Yes, love is free; it can dwell in no other atmosphere.  In freedom it gives itself unreservedly, abundantly, completely.  All the laws on the statutes, all the courts in the universe, cannot tear it from the soil, once love has taken root. Love needs no protection; it is its own protection.  So long as love begets life no child is deserted, or hungry, or famished for the want of affection.  I know this to be true."

Then we spoke vows of partnership to one another – stating that we were forming a union of love separate and more solid than the legal and economic one we bought the day before.  Erin’s mom read a poem that was read at her parent’s wedding – On Marriage by Kahlil Gibran.  Then Kelly’s mom read this:

"May these nuptials be blessed for us, may this marriage be blessed for us, May it be ever like milk and sugar, this marriage like wine and halvah. May this marriage be blessed with leaves and fruits like the date tree; May this marriage be laughing forever, today, tomorrow, like the hours of paradise. May this marriage be the sign of compassion and the approval of happiness here and hereafter; May this marriage be fair of fame, fair of face and fair of omen as the moon in the azure sky. I have fallen silent for words cannot describe how the spirit has mingled with this marriage." -Rumi  



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From December 1, 2010 --  Erin's Health & WE GOT MARRIED

(written by Erin with massive editing help from Kelly)

Since I emailed you last, we don't know anything more from the doctors about the inflammation in my brain.  I probably won't get more information until my next brain MRI on December 15th.  Until then, I'll stay in a holding pattern of taking steroids and resting.  The steroids are somewhat of a double edged sword.  After my neurologists determined that the area in my brain  (which they had called mass, lesion or something that looks like a tumor) was not cancer, lymphoma, tumors, or MS they determined that it was most likely some type of inflammation.  So, they put me on steroids to help shrink the inflammation.

Since I started taking them in early November, I have noticed significant decreases in my neurological symptoms.  Writing, reading, typing, and spelling have all improved. Talking has improved, but it is the most challenging.  When I'm talking about new topics or when I'm tired, I struggle for words.  The right side of my mouth is still weaker than might left which makes it hard to enunciate and articulate words.  I still drool a lot and brushing my teeth is a very messy ordeal. I'm still feeling very tired in general, but I'm feeling little bursts of energy with more frequency than over the past few weeks.  I've had the energy to read (mostly kids book, currently re-reading Harriet the Spy) and knit again.  I'm more interested in food, because it tastes good again.  I have the energy to throw sticks for my dog every few days. I'm very happy to see these improvements and it makes me feel really confident that the steroids are doing their job to shrink the inflammation. 

Being on steroids for a prolonged period of time is not necessarily fun.  Here are some of the downsides... I'm always tired and never sleepy, teenage-style acne, puffy cheeks, racing heartbeat and constant hunger.  Thankfully, my dose has gotten lower over the past few weeks, and I know longer feel like crying or angry all the time and my heart doesn't beat a mile a minute constantly.  While all of these side effects are unpleasant, I'll gladly take them and have chipmunk cheeks for as long as it takes if it means the inflammation goes away.

Kelly and I are trying to take each day in stride.  The stress of not knowing what is wrong with me comes in waves.  While we are relieved to know all of the things that it is not, the uncertainty of what it is and how to deal with it can get overwhelming.  As we posted before, my neurologist's working theory is that I have tumefactive MS.  He told us that it could be a one-time bout of inflammation that can be gotten under control.  The kicker is that he also made a point of telling us that he has seen patients that have relapses of inflammation.  In particular he mentioned patients that have had on-off inflammation over the course of several years and they have no idea why.

Between the undetermined diagnosis, the scariness of the hospital and the subsequent bills, and my impaired ability to work to my full capacity (or write grammatically coherent sentences) , we had to make some serious financial decisions. First and foremost, I needed better health insurance. So, last Wednesday, Kelly and I went to the courthouse and got married.

Kelly and I started talking about the advantages to getting married when these neurological symptoms started occurring in October.   We have talked about getting married for a long time… Our plan was to do some sort of partnership/marriage ceremony next fall, but then everything happened.  We decided to put things in the order that worked best for us and went to the justice of the peace, got papers signed and stepped into legal marriage. The following day we went to Greensboro and put on a sort of wedding pageant for our families (in particular for Kelly’s Great Aunt).  Now, Kelly and I can be on his good health insurance and the stress of the bills and insurance from here forward will be a lot easier to deal with.   And when I start feeling better, we'll start planning for a big wedding celebration/party next fall, so stay tuned because YOU WILL BE INVITED for an all-weekend long PARTY!

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From November 21, 2010 - The No-News News Update

(written by Kelly)

Sorry that it’s been a while since our last update… we haven’t really had any news to tell.  Last week Erin had a follow-up appointment with her neurologist.  The appointment was good and informative, but we walked out still not knowing what exactly with going on with Erin.  They have run tons and tons of tests of the biopsied sample but nothing is showing up.  Some material was sent off to the CDC … but since they are a monitoring agency (and not really there for clinical work) we aren’t expecting to hear much back from them any time soon.

Right now the doctor is leaning towards this stuff being some sort of tumefactive demyelinating lesions (or Tumefactive MS).   That’s a fancy way of saying an MS-like demyelinating lesion that LOOKS like a tumor.  The doctor said that he sees lots of MS patients and only about 10 people with this condition.  Of the ten, only one has had an episode happen more than once.  That means there is a good chance that these lesions will eventually dissipate and never happen again. 

Right now Erin has tapered down to a smallish dose of the steroid and will continue on that until she goes back for an MRI in mid-December.  The doctor will see her right after the MRI to talk about next steps.  Until then he told her to try and do some “normal things” but mostly she has to continue to rest as much as possible.  Today she walked the two-tenths of a mile up to the park (with Kelly and the dog) sat for a bit and then walked home – and promptly laid back down for a nap.  So, we are looking at a slow but hopefully steady recovery. 

Erin has started prodding Kelly to get out of the house a bit to relax (and calm down) … something he has begrudgingly done mostly by hiding at the radio station.  Erin’s family will come down later this week .  We will probably “lay low” while they are here and look forward to seeing folks after the holiday weekend. 

All of your support – both words and deeds – have been so helpful and uplifting as we work through this stressful ordeal.  We cannot thank you enough for this. 

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From November 7, 2010 -- Home from the Hospital, Still Worried

(written by Kelly)

As you know, Erin came home on Saturday evening.  This was a huge relief for us, but we still aren’t exactly sure what is going on with her.  On Friday they did a biopsy of the big mass and came out of that thinking it is some sort of infection.  On the pre-op MRI they saw three more/new spots in different places around her brain.  The doctor called them "lesions."  Their sudden appearance lends strong support to this being an infection and NOT MS or some sort of cancer. The good news is that the spots don’t seem to be pushing stuff around in there; the bad news is the secondary spot from the first MRI is a little bigger.  In preparation for the discharge the doctors ordered a bunch of tests – meaning a bunch of blood got drawn on Saturday.  Between the blood tests and the tissue from the biopsy they are hoping to figure out what is causing the spots (and swelling) in the next few days.  Going over the details of the discharge, the doctor explained that getting to go home for real rest and starting a run of steroids was the best plan right now.  So, we are still pretty anxious about what is happening but happy to be home.

I’m working with a couple of friends to put together a calendar that I hope to share tomorrow.  It’ll help me organize the various help people have offered from food to dog walks to just sitting with Erin while I’m at work.  Thank you again for all the support and kind words!

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From November 3, 2010 - Erin's (not) superfun Hospital Adventure

(written by Kelly)

Dear friends,

Over the last 7 months Erin has been diagnosed and treated for Rocky Mountain spotted fever, appendicitis,  lymphadenopathy and two weeks ago Lyme disease.  A test for Lyme disease was run in August when looking at her swollen lymph nodes that came back with an equivocal result.  Her primary care providers did not run a second Lyme test.  When she went back to the doctor two weeks ago with some neurological symptoms (difficulty writing/typing, forming word sounds and verbal expression), the PA paired these symptoms with the equivocal test to make the Lyme diagnosis. 

After several days on the doxycycline the problems with speaking seemed to be getting better but on Friday (10/29) she woke up with worse symptoms.   We went back to her primary doctor that morning and after some standard neurological tests they sent us for a CT scan and then immediately on to Duke ER. 

Late Friday afternoon she had an MRI and in the early evening a lumbar puncture.  There are two spots showing up on her MRI – a bilobed solid and rim enhancing mass approximately 3x2cm surrounded by swelling in her left frontal lobe and a smaller lesion in the left subcortical white matter of her frontal lobe.  They listed a wide range of possibilities from tumors to lymphoma to MS with all sorts of infections and acute issues in the mix. 

Erin and I (and some family/friends) spent the weekend in a room on the neurology floor in a holding pattern with little to no news.  The different residents explained how a particular lab is only open M-F until 5pm and we needed to wait until then for the necessary tests on her spinal fluid.  

On Monday during rounds they said she would need another CT scan to make sure the swelling hadn’t increased before doing a new lumbar puncture (needed fresh sample).  They did those procedures later Monday afternoon just in time to get the spinal fluid to the lab before they closed. 

Tuesday morning the MD that did Erin’s initial intake at the ER asked if he could take her case to the Conference of senior neurological residents (and their attendings).   They decided to do a full torso CT scan to help eliminate the possibility other things going on. 

Today (Wednesday) we started getting our first substantial news.  The torso scan showed no obvious primary malignancies but there are a few “intermediate nodules” that might require a follow-up scan in 6 months.  The spinal fluid showed no clear indicators for lymphoma.  While the findings don’t conform to standard MS they seem to be leaning more and more toward that as the situation.  Tomorrow we think there will be a surgical consult with neurosurgery to perform a biopsy of the mass to fully rule out various potential cancers.

Erin misses being at home.  She misses her quiet/private/alone time.  She misses her house and her pets and sitting here in the hospital with her vitals being taken every four hours but not hooked up to anything and nothing new happening is physically and emotionally exhausting.  Due to uncertainty of this situation, Erin preferred to take a lower profile approach to talking about it and taking visitors...

At this point Erin wants you – her larger community of friends and loved ones – to know what is happening with her.  She would like for you to keep her in your thoughts.  It’s been a long year of sympathy and all Erin really wants is to feel normal and productive and we'll get there eventually.

If you have messages for her please don’t hesitate to email either of us or send a message via facebook.  We are hoping for the best and look forward to going home in the coming days to begin whatever treatments and recovery is needed.