Friday, August 10, 2012

Back in the Game

Happy Place.
 I'm back! I dropped off of the face of the blogosphere about six weeks ago but it seems like it’s been a year. My last post was from the hospital on June 16. I was discharged with a medicine cabinet full of drugs on June 18 and went right to my cardio-pulmonologist. At that appointment, I was introduced to another patient who was diagnosed several years ago. The introduction was meant to give me some comfort about living with PAH as I started my first dose of Tracleer. It did no such thing. I left worried about my liver and thinking that I would have an intravenous medicine pump embedded in my skin within the month. That hasn’t happened (huge sigh of relief) to this point. What has happened has been miraculous from my perspective. I’ve told the story many times but I haven’t gotten around to writing everything down until now. I thought I’d kick off my return by sharing it with you.
Prior to my hospital admission, my family was praying for me. I’d been sick and getting bad health news on a regular basis. My sister took it to another level and made a request that her prayer group at church collectively pray for me. During this whole experience, I’ve gotten encouraging messages from members of the group. I thanked them and thanked God for them. I projected faith and positivity in my responses, my every day interactions and on my blogs but internally, I was struggling. I felt like crap (to put it mildly) and my reaction to the steroids was getting worse every day. Then, I was side-swiped with a foot infection that put me in a wheelchair and hours later into the hospital.

I suffered through the hospital stay and each passing day seemed to bring more bad news. My body was falling apart. Steroid-induced diabetes, kidney failure, persistent edema, tachycardia (my heart was beating over 140 beats per minute)…each hour seemed to bring more bad news into my life and I grew more and more distant from God as a result. Everyone was praying and believing and I had fallen silent without anyone knowing.

When I got stable enough to go home (heart rate down to 110s, edema drastically improved with meds), I was discharged. The first week out of the hospital, I felt terrible. I could barely get out of bed. I had a persistent cough that prevented me from getting a full sentence out. I was sweating constantly and dependant on oxygen. I was able to work from home (don’t judge me for doing work in that state) and did that for the entire week (minus one day when I just couldn’t pull it together). My mom and sister came up to help me and Ash (hubs) around the house. When I was finally able to get out of bed to shower, it was an ordeal. I felt faint and weak but I got through it. The next day, I made it downstairs to the living room for dinner. That was an occasion to celebrate. That’s how bad things got. Walking downstairs had become a major accomplishment. It was depressing.

The next week, my mom and sister left and I tried to get back to my life. I went to work and everyone was positive. I worked late several times to prove that I would not be sidelined by my illness and that the hospital stay was just an anomaly (residue left over from my old job). I plowed ahead but at the end of each day, I was so exhausted that I couldn’t get out of the car after my commute. One night, it literally took me 30 minutes to motivate myself out of the car. I went into the house, dragged myself upstairs and went to sleep mired in thoughts of starting over on the disease train. The train chugged along stopping at doctor after doctor and then full speed ahead to work. Every doctor had a plan and nothing sounded good.

We might have to do another pulse of steroids.

Let’s go ahead and schedule a kidney biopsy.

You will likely need dialysis (DIALYSIS!!!).

If the Rituxan doesn’t kick in, we’re going to need to talk about Cytoxan.

Cytoxan causes instant irreversible menopause.

You can consider egg harvesting and a gestational surrogate or adoption but all are expensive and do you really want a child in your condition?

With all of that dancing in my head, I just wanted to cry and scream into a pillow constantly. At the end of the day, however, life wouldn’t allow for that so I pushed forward with my daily obligations all the while being pretty silent with God. Then one day, I was driving to work from a doctor’s appointment and in need of inspiration. I popped in a T.D. Jakes CD from his series about living on purpose. So many things in the message hit home. That night I decided to really make time to pray. I fully intended to pray for healing but what came out was a request to remember how to pray even in hard times. I left it at that. My sister also called me that night to tell me she was sending me a prayer cloth from her prayer group. I will admit that I didn’t focus on that too much. What would a piece of fabric do that a prayer couldn’t? I could barely get a decent prayer out. What would I do with the prayer cloth?

Then everything started to turn around.

Later in the week, I got results from the nephrologist. My urine looked great and I wouldn’t need a kidney biopsy. It was the first piece of good news I’d gotten in what seemed like ages and I was over the moon. Then, I got word that the Rituxan had kicked in and my lupus was back in remission. The only thing that was off was my potassium level and that was because of the level of diuretics I was on. The nephrologist decreased the dose and doubled my dose of potassium. At the next appointment the following week, I just needed to test my potassium. Leaving that appointment, I was happy for the first time in a long time. My kidneys were in good shape, I wouldn’t need dialysis and my level of medication was coming down. The biopsy was cancelled. Woo-hoo!

I was also pleased because the appointment was quick and I was on track to make it into the office before a conference call I was hosting. As I was pulling out of the garage, an 18 –wheeler pulled up and blocked the garage exit. Thanks genius. I was annoyed but instead of cursing, I picked up the phone and called Ash (don’t worry, I have hands free calling in the car) to tell him the good news. During the conversation, the truck moved and I pulled out to the curb and waited to pull into traffic. Of course, no one would let me in. I told hubs and he said, “You have to learn to drive aggressively.” I made a comment about crazy cabs and defensive driving keeping me out of wrecks. Eventually, someone let me in and I made it across town in record time (which never happens). Then, just as I was headed into the Lincoln Tunnel, I got into a car accident.

Don’t panic. I wasn’t hurt. My car only suffered a few scratches. A truck cut me off (as is often the case in NYC) and I was rear ended by another driver. Luckily, I saw the truck inching up and I had a feeling he was going to jump into my lane. I decided to pull off slowly and let him have it. Even pulling off slowly, I had to slam on my brakes because he swerved so far that he almost clipped the side of my car. Long story short, I slammed on brakes and the driver behind me slammed into me.

My reaction to the whole thing (after my initial shakiness wore off) was pretty positive. I thought my bumper would be on the ground based on how the other driver’s car looked in my rearview mirror so when I had a couple of scratches, I was thrilled. I was also still on a high from my doctor’s appointment. I am sure the other driver thought I was insane but in that moment, the accident seemed so small. I was so grateful for not being hurt that I was almost in a Zen state as I talked to the police officer (who witnessed the whole accident) and the other driver. As I rifled through my bag to find paper to jot down my information, I came across a pretty black and white card with a pink ribbon on the outside. I didn’t remember who it was from but I decided not to write on a piece of the card and shoved it back down in my bag. I did, however, write on the back of the envelope it came in. The rear-ender and I exchanged information and I went on my way in a ridiculously good mood for the circumstances.

I called Ash and said, “I just got in a car accident.” He asked if I was ok and if my car was ok. I told him the whole story and we laughed about the earlier conversation we’d about driving aggressively vs. defensively in NYC. (Score for the defensive driver!)

I didn’t make it to the office in time for my call and had to host it from the shoulder of the highway (so I wouldn’t risk dropping the call). After the call, I got a text message from my sister asking if I’d gotten the prayer cloth. I didn’t know the answer because I hadn’t checked the mail in a few days so I pulled back into traffic without answering and went about my day.

I got home that night and checked the mail. There were a couple of cards in the box—get well wishes and the like. I started opening them in the driveway so I could dump the junk mail in the trash and I came across a black and white card with a pink ribbon. It was the exact card I’d shoved back into my bag after the accident. It contained the prayer cloth from my sister. It had been sitting in the mailbox but I was happy to have it in my hand and had a whole different feeling about it in light of the blessed day I’d had.

Then, Ash called to tell me one of our friends (and one of his best friends) had been in a motorcycle accident and was in critical condition. He had a collapsed lung, broken ribs and collarbone and was not doing well. I said a prayer for him and called my mom, dad, stepmom and sister to ask them to pray for him. Then I told them all about my day. Everyone was so happy. After about 3 hours on the phone filled with stories of how many people were praying for me and how the prayer cloth came to me, I wiped my tears (of gratitude) and relief and called it a night.

The next day, Ash was headed to the hospital to visit our friend. I couldn’t go because I had to go to work but I decided to give him a piece of the prayer cloth and 3 scriptures to pass on to our friend. That night, I got a full report. Our friend was doing much better and was off of the breathing tube and in stable condition. I thanked God and went about my night. The next day, we got a call from him. He was being discharged from the hospital!!

I don’t know if you believe in the power of prayer or miracles but I certainly do. This whole experience happened at a time when my faith was getting smacked around and I was having trouble finding words for prayer. I was sick and hurting and honestly, angry with how things were playing out. I hadn’t lost my belief in God but I just felt empty and didn’t understand why things were going the way they were.

The connections that weaved through everything that week centered me again. I have been feeling great ever since. I certainly haven’t been on cloud nine 24 hours a day. Life happens and we respond in ways that aren’t always the most centered and pleasant. Then (hopefully), we dust off and move forward and hopefully learn a lesson. Occassionally, though, we have those moments that are like lightening in a bottle (or a prayer cloth in a card) that are special and need to be shared. The good stories fortify us for the less than Zen days. I hope this one does that for you. God Bless.

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