I wish today were different.

I have spent most of today shroud in the isolation of illness.

Alone, in my one bedroom apartment with my thoughts, my medications and my emotions. There are times where I relish such days as they offer insight and healing. Today was not such a time. The quiet hurts my ears. My thoughts are overwhelming and the tears have been free flowing.


I wish today were different.

I need Christmas

This was written about two weeks before Christmas this year. Just now getting around to posting ... 

I’ve gotten used to bad news at Christmas time.

It never fails that what society inflicts upon us as “The Most Wonderful Time of the Year” always enters my life with both triumph and heartache. There are the usually family issues that everyone encounters: there are traffic-jammed highways, there are atrocious squeaky Christmas tunes “sung” by various woodland creatures.

Illness always invites itself to the party. Some years we have ushered in the birth of Hope gathered around small dimly lit trees in ICU rooms – a place where there is noise and hurry. And pain and stillness. A place where the concept of Emmanuel becomes concrete.

Other times, we have spent Christmas Day in the ER. Other times hospital season arrives just in time to watch fireworks from the hospital-parking garage. This year, we are stomping on fires and holding our breath.

It hurts me to listen to my mom breathe. It is rattle-ly, it is shallow, it is labored. Recently, she got a new pulmonologist who gave us hope that her lung condition may be able to improve. They did the tests, the imaging, we did the waiting. It turns out that her condition will not be improving. She is on a downhill trajectory.

Also, I recently discovered that my immunosuppressive therapies are not working and I must switch medications. And I’m back on steroids. And I feel defeated.

I need Hope to be born.

I need Love to be real.

I need Peace to dwell within.

I need to rediscover Joy.

I need Christmas.

The Most Wonderful Time of the Year

The holidays and chronic illness are difficult.

My ordinary routine is organized around pill-swallowing and eye-dropping. I’m used to doing these thing in the same time at the same places. The holiday season, my sleep schedule and traveling tend to turn that on it’s head.

This year I tried really, really, REALLY hard to protect my heart and my body from the usual vicious battle that is brought on by the most wonderful time of the year. Even so, I’ve had a couple of bad days. Really bad days. I had one day of eye swelling and pain that forced to spend a day in bed with they lights out knocking back narcotic pain killers exactly every four hours in order to stay ahead of the pain. A day or two later it was time for my scheduled Methotrexate injection. I thought I was doing fine but was suddenly overcome with severe nausea and fatigue. Again, I was forced to still myself and sleep. And rehydrate. Looking back on that event, I think I may have not been forcing enough liquids and my body was having a hard time processing the medication.

I get frustrated. Even when I do EVERYTHING right, there are days when I feel like it is all working against me. Which, in reality, I know is an over exaggeration. Some days that is just how it feels. 

I’m thankful for new days, days that aren’t bad days and bright spots in life. 

In Gratitude

I have a tendency to only write about doctors when my blood is boiling and my spirit is crushed. Tonight, my heart weeps gratitude and my hope remains intact even though today has been a day of struggle, pain and setbacks. 

At my last eye doctor appointment, my eyes were quiet. That's a fancy medical term for no active inflammation. It was thrilling to hear. After 5 months of fighting the inflammation, multiple medication adjustments, eye drops every hour and months of systemic steroid therapy, I thought I was on the down swing. Today was the appointment where I was waiting to hear that I could start to taper down (and eventually discontinue) oral prednisone. 

But, today, there were cells. 

Active inflammation in my eyes.

There will be no changing anything right now. We must keep the inflammation as under control as possible and that means sticking to all the big guns. 

My doctor has a superb poker face and voice... But today was one of those appointments where I could tell as he was examining me that the news he was going to give me was not the news I wanted. During an exam, my glasses are off and I can barley see an inch in front of may face. But I could tell by the way he moved the light and microscope that he was seeing cells. I could feel it in the air. I could sense his frustration wound in empathy. 

He is always gentle with his bad news and patient with my questions. He and I both suffer from (near) eternal optimism and he is always purposeful about making sure I hear something good at every appointment. Humor is a main coping tool that I use to survive and he is able to laugh with me. 

There have been days were I left the office feeling absolutely crushed by the gravity of the disease. There have been days where I barely make it to my car before the tears consume me. These are the days I beg for answers that are not to be known. Even through all of this, I have never felt crushed by the attitude or actions of this doctor. Its a rare moment of respite in an emotional whirlwind of chronic disease. 

Tonight, I am thankful to have him on my healthcare team. Thankfulness is whitewater-rolling though my soul this evening, even though I drank defeat for lunch. I am thankful for so much - for technology, for medicines, for quiet moments, for the grace of the rising sun, for the peace of the evening, for a kindred spirit, for the hope that follows sorrow, for the life that grants these experiences. 

Medicine

Last week was the first visit to the new rheumatologist. 


And it was delightful. 


I haven't had a good working relationship with a rheumatologist in almost 20 years. I think some of it has to do with the way my disease manifested. It showed up in ways and patterns that were very unusual for a child. And have continued that way ever since. 


Being in my life (in any fashion) requires out-of-the-box thinking. It is so important that I have a doctor on board who understands and is willing to work with this fact. Or at least appreciates the quirks. 


I'm restarting methotrexate, the horribly wonderful magic poison, at a low dose, staying on plaqunil, and beginning Enbrel therapy.  I started the Enbrel yesterday. I didn't have a life threatening reaction and it didn't hurt nearly as bad as Humria. It is, by no means, a pleasant sensation. Today, I'm feeling really groggy and sluggish. I'm hoping that these side effects will lessen as my body acclimates to the medication. I start the methotrexate on Wednesday, so I will get a more accurate picture of how gross the new regimen is going to make me feel. 


Another exciting prospect of the new medication is that (hopefully) I can begin to start tapering down on the prednisone. My body is really starting to feel the full impact of long term steroid use, not to mention look like it. I feel like a grumpy whale-sized marshmallow with an insatiable appetite and an obsolete wardrobe. Ditching the 'roids will be the the first thing I discuss with the eye doc at this week's upcoming appointment. 

"Lucky 10 Percent"

I haven't felt like writing. Or doing much of anything for that matter. My energy level has been incredibly low over the last couple of weeks. I could sleep all day if I let myself. But, for the sake of my mental health, I've been dragging myself from the bed for at least 8 hours a day. I would love to drag myself out of bed and do some mildly interesting outside activities... but it is almost July and near 100 degrees for the last few days. I prefer to not attempt happiness get heat stroke.

Had an eye appointment last week. The inflammation is clearing up and staying gone which is great news. The way we have been able to achieve this is through steroids. Lots of them. Eye drops (for the last 3 months, I've been having to put them in every hour) and oral prednisone (pills. lots of pills). I've known for a long time that I am part of the "lucky 10%" of people who respond to steroids with increased eye pressure. In the past, it has only ever been a problem with the eye drops. Apparently this time around, the oral prednisone is complicating things. While it is great news that the inflammation is under control, I have been dealing with glaucoma for the last few months. That is currently the most pressing problem.

Everything with autoimmune disease seems to come in the form of bargaining and trade-offs. If you take this medicine, you won't have the problems you started with ... but you could have a potentially more threatening side effect! But, if you don't take any medication : you're damned. without hope. Pick your poison and have fun playing Russian Roulette. Also, enjoy bleeding out of your wallet for something that has no promise of helping and could maim and/or kill you.

I have some appointments coming up with some new specialists soon. Hoping for answers and options and optimism. Or at least someone who will understand that I am more than I didn't choose my diseases or my status as one of America's uninsured medically non-elite.

Thoughts

A glimpse into days such as these: 

· Why the heck am I so queasy?

· Why does my head hurt so badly so suddenly?

· Crap. Nauseous and eye pain. Pressure problems.

· I want coffee. But I don’t feel like putting anything in my tummy.

Better introduce some caffeine soon or the eye pressure pain will be the least of my head pain evils.

· I should crawl over to the med box and down some anti-puke pills. With coffee.

· Is now a good time to be growing my hair out? It’s never an easy thing to do on steroids.

· Why am I thinking about my hair?

· I think I want to listen to Billy Joel (very softly) while I wallow in bed.

· Man, my head still hurts. Could my dry eyes be aggravating the pain?

· Perhaps. Maybe a steamy shower would help.

· Crap. I’m still pretty nauseous. I should know better than to stand in a hot shower. But the steam is really helping my eyes

· I’m now playing chicken with my gag reflex.

· I will win! I will be victorious!

· Good Lord, I need to lie down.

· Ahh, bed. Naptime.

Yesterday

Yesterday, I had an angry day. A day filled with so much emotion and pain that I spent the day in a broken, onion-skin-fragile state.

Today, I was in recovery –survival mode.

I let myself sleep in. I ate cinnamon rolls for breakfast at lunchtime. I watched a Red Box movie and got lost in the sensory experience of folding towels fresh from the dryer. I didn’t get dressed until dinnertime and I didn’t leave my house until 7:00pm.

Yesterday was such a strange experience. It was like having a fight with a lover while on vacation. Enraged simultaneously with passion and frustration, with love and contempt, with devotion and confusion. Fight all you want, you’re still going to be forced to sleep in the same bed and continue your journey when you awake. You can even make-up and move on. It’s still a relationship changer. As yesterday ended, I showered, brushed my teeth, took my medicine and crawled into bed with myself… and my disease.  

I have no enlightening words of wisdom from today. All I know is that I must keep going forward. I must keep searching for options and possibilities. I must remember that the bad days will happen. And so will resurrection-filled good ones. 

Angry

I spent today angry. The amount of anger I found enveloping my heart and my head, is entirely unusual. I'm the kind of person that gets angry and uses it as a call to action or a means to change. Not a doorway to despair. 

Today, I was not myself. I was angry. 

Angry to the point of endless tears and a 4 hour nap.

Angry at the disease that bombarded my life when I was a toddler.

Angry because I am at a point in my life where I should be growing and giving life to ideas and dreams and babies, yet I wake each day with the fear of lost functioning and threatening side effects.

Angry at the damage that has already been done.

Angry at my maternal genetics -birthed in an orphanage and possibly harboring answers behind sealed records.

Angry at my paternal genetics – part troubadour, part restless hitchhiker. The mysteries that lie in the code totally unknown.

Angry at every inflammatory cell that storms my body and wrecks hell on their captor. 

Angry at the future. For being shroud in mystery.

Angry at the sunlight. The life-giving radiance is a painful sight for sensitive eyes.

Angry at the pharmaceutical companies. At their lies and covert missions.

Angry at for-profit health care.

Angry at an oppressive and ill-named “healthcare” system.

Angry at every doctor that refuses to see an uninsured patient. You get to pick and choose your cliental. We don’t pick our diseases. Or our fate if they are poorly treated.  

Angry at the fact I’m angry.

The day started with a decent amount of hope and light. But it quickly sank into dark and familiar places. I am once again confronted with the reality that healthcare – decent healthcare --is for the privileged and not for the masses. I am in a period of tremendous disease activity. As usual, the life-sucking inflammatory cells had to make a grand appearance in my eyes. This was a signal that I was escaping the control of the current immunosuppressant therapy and needed to make an adjustment.

The problem is finding a doctor that understands rheumatic  diseases in young people and will also be a team player on my treatment team (which includes a primary care doctor, an inflammatory eye disease specialist, hematologist and rheumatologist)  Yes, I have a disease that attacks and destroys and leaves the battleground (me) torched.  I’m also a single, 20 –something adult in graduate school. I live with dreams and possibilities before me. I want to remain as active as possible and not let the disease sideline me. Managing the disease is difficult. Managing the side effects of treatment, in light of my current place in life in overwhelming.  Financially affording my disease is impossible. I’m not trying to be difficult, or question the judgment of a doctor when I bring up financial concerns in during an appointment. I’m trying to live in the real world. The world where my grocery budget depends on my medication list. The one where I sell my DVD collection to buy eye drops. The one where I’m just trying to survive in the world and finish school so that I can have a job with insurance.

Maybe I just needed an angry day. I woke up from a nap and felt better. Not cured. Not in control. Not at peace. Not OK. Just better than where I left off. Maybe that’s the best I can ask for today.

Unexpected Sacraments

There are many disciplines of chronic illness.

Taking medication, paying medical bills, scheduling appointments, deciding on treatment plans, experiencing the illness, researching options, explaining it to other people, dealing with disappointment, and asking for help are all reoccurring events that take place in the life of someone with chronic illness. These things come with the diagnosis. You don't have to ask. It is a package deal. In the depths of it all I have learned that these disciplines, can be sacraments.

The ritual of preparing and taking medication is a significant event in my day. While measuring the dosage, breaking apart tablets, pouring the water, and ingesting the medication I can't help but recall communion and the mandate to "take and eat" the "bread of life" and the "cup of blessing". The medication I take and eat keeps my organ systems functioning, my joints from being damaged and my vision protected. It gives me life and the hope of living life. I swallow it with water, a life-force in itself, one that runs through everyone.