Anger & Advocacy: When everyone wants to cut you open

Usually when people are sad, they don't do anything. They just cry over their condition. But when they get angry, they bring about a change. 
James Russell Lowell

Perhaps it was the fact that I was hungry. Perhaps it was the fatigue. Perhaps it was, in a not so subtle way, my breaking point.

My day off began like any other. Any other person with a chronic illness that is. With a doctor’s appointment of course. I knew this wouldn’t be a routine visit as I had been having some pain in my side, lots of fatigue and some shortness of breath. I had scheduled the appointment the day before, truly believing I’d be in and out with a new prescription in my pocket by lunchtime. I skipped breakfast, saving my calories for an IHOP waffle I had been craving for days and was certain I’d be able to enjoy once I handled this nuisance known as my “health.” I threw on some clothes (and by that I really mean slowly and gently I sat and clothed myself whilst I gasped for air) and drove myself to the doctor’s. When I got there they sent me to have a chest x-ray at an imaging center that was found half way around the world.

If you live in Houston, you are well aware of our amazing medical center. You are also aware that the place is a logistical nightmare. There are tunnels and train, intersecting buildings and wheel chairs, and hospitals with the same name on two different streets. When you can’t breathe and you don’t know where you’re going, you better hope someone in scrubs walks by. Needless to say, I got lost on my way to the x-ray imaging place. By the grace of God; however, I ran into the nurse who had sent me to get the x-ray and she pointed me in the right direction. The X-ray got taken care of after many delays and the lovely nurse came back to get me after the doctor told her he was concerned about my shortness of breath. She kindly found me a wheelchair and pushed me back across the 2.5 blocks to the doctor’s office.(That is NOT an exaggeration, doctors in the med center actually expect sick people to go traipsing around the city for medical procedures..sigh)

As I reflect now, I believe that being highly encouraged and almost forced to sit in a wheelchair was the beginning of my discontent. I was not incapacitated for crying out loud! I was only having a little fatigue. I could walk on my own two feet; it would just take some time. Why couldn’t anyone understand that, show some compassion, and just slow down? I did not want to be made into an invalid. I just wanted to go to IHOP and eat a damn waffle.

I sulked and writhed inside. When we arrived at my rheumatologist’s office, they took my blood pressure (which was elevated), temperature and height a weight. I sat in the patient room impatiently waiting for him to tell me what I had, give me a pill, and send me home. My doctor knocked gently and entered with a folder in his hand and a wide eyed expression.

“I just got the x-ray results back. You have anpericardial effusion. That is, fluid around your heart. Your blood pressure is high and I am concerned about your kidney function. We are admitting you to the ER right away.”

What the hell?! This is stupid. You’ve got to be kidding me. I don’t have time for this, and I’m so hungry I could eat my arm. Those were the first thoughts that ran through my mind. The anger was rising.

After a series of breathe in, breathe out stethoscope checks, a set of unrelated questions about my scleroderma and a phone call from the guy who reads the x-rays confirmed the diagnosis, I was back in a wheelchair being pushed to the Memorial Hermann ER. I had a doctor’s note in my hand, an empty stomach and a heart full of “fluid” and rage.

This was NOT happening. Who has time for these things? It’s my day off! And not a sick day, like a real legitimate day off! I sat in the waiting room and texted Lupe. (Yeah, yeah I know. You shouldn’t “text” the fact that you’re being admitted to the ER for heart failure and kidney problems. But, in MY defense Lupe is a teacher and I know he can’t answer the phone during class. Besides, it was my FIFTH time in the ER this year. These incidents were becoming part of our “normal.” It’s like texting: “going to the store, need n e thing?”) He called right away and I explained every aggravating detail with as much sarcasm as I could muster. He said he would be there as soon as possible.

Shortly thereafter, I was admitted. Within moments 5 different health professionals entered the room and began poking and prodding me. One inept nurse tried to put in an IV and take my blood,(she missed several times) one attached probes for an EKG, one asked me take off my clothes and put on a gown, an intern asked me questions about my general health, and a doctor tried to listen to my lungs amidst all the chaos. I laughed and nervously wriggled in the bed, answering questions as I heard them, handing over an arm, a vein, and a boob, breathing deeply in and out. I still didn’t understand what was happening or why I wasn’t eating at IHOP yet.

I was no longer a human being with a soul. I was a human body with a problem. A cracked shell that needing mending. A scientific experiment. I was finally “over“ all of it.

This is now beyond stupid, I thought to myself. Why am I even here? Nothing really hurts, except for everything THEY’RE doing to me. This is absurd. They ran more tests, drew more blood, and extracted urine.

After the first few hectic minutes, things calmed down. I had an echo done of my heart, which confirmed over 800cc’s of fluid (I don’t know what that means either but apparently it’s a lot) and inflammation around the heart. The echo was so fascinating that the doctor grabbed two residents/interns/students to show them. Joy, with cynicism I thought: How I ironic that I, a teacher on my day off, had officially become the lesson plan for the day. The two gentlemen beamed with excitement.

The only nurse who had bothered to learn my name must have seen the horror in my eyes as I stared at the interns because she had the compassion and sincerity to ask me:

“How are you doing honey?”

And…unabashedly, I burst into tears. Which, because I’m me, only pissed me off even more. I was NOT going to let these people or this situation make me cry. I refused to let it have that power over me. This was not how this was going to go down. Not today. Not anymore. Not ever again. I took a deep breath, wiped away the tears and stared at the needle in my arm. No one asked me anymore questions.

Eventually, the ER doctor came in and explained to me the series of problems I was having. The human heart naturally has a little bit of fluid around it to protect it. I, on the other hand, had a lot more. The theory is that this was probably caused by my scleroderma and being off of my meds for so long. (This is what we call a “flare up”) If the fluid doesn’t go down it can lead to heart failure; however, I was also suffering from possible renal crisis. Renal crisis is kidney failure, which was also induced by my scleroderma and was elevating my blood pressure. In conclusion:

1. They would had to give me drugs to reduce the inflammation and fluid around the heart BUT
2. Those drugs would elevate my blood pressure even more sending me into renal crisis SO
3. They had to give me other drugs to REALLY lower my blood pressure in order to give me the heart meds OR
4. They would have to stick a needle in my heart to drain the fluid OR
5. Open my chest up and insert a tube to drain it out.

Those were my options. I was confused. I was livid. I just wanted a damn waffle. And yet, no one would feed me anything “in case we need to prep you for surgery.” In that moment, I decided that no one was going to cut me open simply because they wanted something to do.


By this point, Lupe had arrived. He was updated on my status and we were discussing what to do next. Luckily, I have an amazing rheumatologist who sent other amazing doctors to check on me and he insisted on treating me with the drugs first. He wanted no needle, no tubes, no cutting. I trusted him, and I definitely did NOT want to be cut open or probed with a “large needle.” We all agreed that was going to be the plan. Give me all the drugs you can to make this go away. I do not want to go under anesthesia. (My condition makes the healing process really slow, the last thing I needed was to undergo heart surgery)

I felt at ease for a moment. We had a plan. All would be well. That was until fancy pants cardiac Nurse Practitioner walked in with the “paper work.” She explained the two surgical procedures and wanted me to sign consent forms. I stopped her dead in her tracks after several crazy looks back and forth between Lupe and me. The camel’s back had broken.

I know you’re not supposed to shoot the messenger but I needed all these “specialists” to be on the same page about what was, and was not going to be done to me.

“I’m sorry, I JUST spoke with my rheumatologist, and HE said they were going to give me prednisone. HE said I was NOT having surgery or a needle or anything. He said I would be treated with medication. Have YOU spoken to him? Cause this is NOT what he and I agreed on. I really think you all need to find him, or call him and see what he says.”

She smiled at me patiently, twisting and turning the papers in her hands. “Ok, well would you like to speak to the cardiac surgeon to get all the information on the procedures and ask him any questions? Because this is what HE is recommending.”

“Um, yes. I want to speak with HIM. And you all need to speak with my rheumatologist. Dr. A--. Find him and talk to him.”

“Ok, ma’am. I’ll see what I can do.” And she walked out of the room, papers in hand. Unsigned.

I had finally said “no.” My anger and frustration had become my ally. I advocated for myself in a way I never had. And apparently, I caused quite a stir. (I found out later that the ER doc, my rheumatologist, the cardiologist and the cardiac surgeon argued about how to treat me. ER doc and surgeon wanted to cut me open, others wanted me on meds.) I don’t generally stand up to anyone in a position of authority, especially when I think or know they know more than me. But in that moment, on that day, I knew that I couldn’t just say yes and hope for the best. If they weren’t going acknowledge that I was more than just a body, I was going to force them to.

It was a blessing to have Lupe by my side to help me sort through the chaos and make sense of the medical jargon and miscommunication. It was a grueling day that led to 5 more days in the Heart and Vascular ICU, and a lot of drugs that I will probably have to take for the rest of my life. But I know that those 5 days could have been 10 or 12 or even more with surgery and large needles and even stronger drugs with the risk of infection as a side dish.

I know that if I had let the tears flow, that if I had sunken into a pit of “woe is me” I would have signed those papers. I know anger does not solve all our problems. I know anger is one of the stages of grief. But that day, anger propelled me forward to take action. I’m a better person because of it. I am now not afraid to say no and hold my ground. My health is a non-negotiable, even if I never did get that waffle.

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If you ever find yourself in a position where you have to make a medical decision and you CAN advocate for yourself (meaning you’re not on a breathing machine and can talk or communicate in some way) I want you to remember a few things that I came away with.

1. Get informed. Ask what they’re doing to you, why they’re taking blood or urine, what the machine is for, who is going to read it etc. Even if all you can say or repeat is “what’s that for?” or “what are you doing? What are you doing now?”

2. Communication is key. If you live with a chronic/invisible illness you probably already have at least one doctor you know and trust. And who understands your condition. Be sure that doctor is informed about what’s happening with you. Ask to speak to him/her and be sure the ER or any new doctors have spoken with him/her also. These people aren’t going to go out of their way to find each other, they’re “too busy,” so force them to. AND they all have their own medical agenda, be sure you have one too.

3. Have a support system. I know not everyone is fortunate enough to be surrounded by so many loving people. But try to have at least one other close friend or family member around to help you sort through the chaos. They can bring clarity to the situation and ask the questions you did not think to.

4. Just say no. If you have the time (and it’s not do or die) kick everyone out. Say no to a procedure in the middle of it if it hurts. If you’re not sure what they want you to do say no. If you just need a minute to think, ask them to leave. If you don’t want to be the lesson plan say so.

It’s a tough world we live in. It’s even tougher when our bodies are fighting against us. But there are some things we can control and sometimes a little rage can go a long way. In the end, it’s your body, and only YOU can make the final decision. If you ever feel helpless or out of control, let anger become your ally and let it give you the strength to advocate for yourself.

Broken Toe Syndrome

"Getting over a painful experience is much like crossing monkey bars. You have to let go at some point in order to move forward.” -C.S. Lewis

When you break or even stub your toe it well, it hurts. And often it can hurt like hell. You may grunt, shriek, sigh heavily and maybe even shed a little tear. You'll patch it up with ice, a bandage, maybe splint or a special shoe, pop a few pain pills and after about a day or two go hobbling about your business. Within a few weeks you're back in sneakers playing flag football or traipsing around the mall.

The broken toe was an inconvenience. It hurt, it was annoying but you healed and you moved on. You'll get to share the story with friends and laugh about how you don't know who put that stupid 30lb weight next to the bed and you'll curse yourself for running into it. But what were to happen if that 30lb weight were secured to the floor and you forget it's there and you get distracted and suddenly you just keep stubbing and breaking your toes? Suddenly, this "inconvenience" becomes something more.

Such is the case with chronic illness. Such is what I've learned over the last 4 months. In an attempt to live a "normal" life, pain and med free, I forgot that the weight was still there. Here is the recap: Last year, almost exactly to the date (It was Dan's birthday weekend) I stopped taking all of my medications. Telling myself that I was strong enough, healthy enough and ready to take that leap. (My doctors approved of this at this time, so I was not completely crazy)

I wanted to start a family and knew that I couldn't on medication so I did everything I could to "get healthy." And for a few months it worked! I was healthy, strong, happy and optimistic. In December, we got preggos! I couldn't have been happier. My body, on the other hand said, "not now." By early Jan. we miscarried.(ER visit 1) As devastating as THAT was (think of stubbing the pinky toe!) I was not going to give up. I stayed off my meds and pursued my dream of starting a family. (Docs still ok with this)

In March I ended up in the ER(again) for fluid in my lungs and "slight" pneumonia. And yet, I persevered. A few antibiotics, some strong pain pills later and within a few weeks back on the baby making wagon I flew. At this point someone should have just clobbered me over the head with another 30lb weight. But, I am stubborn.

April and May flew with little to no incidence but I had started developing almost permanent Raynaud's.(Click here for explanation) It was painful, annoying and the pain started to progress from my fingers up my hand. I got some "conception safe" drugs and tried to go about my business. But that meant wearing gloves...in the middle of May/June...in TEXAS...I was quickly nicknamed by my loving students: Michael (I often only wore one)/Ms.Jackson/and my favorite: Frostie, since I explained to them that it was like getting frost bitten.

June 1st rolled around and I was back in the ER. High fever, chills and...a heart murmur. For three weeks I saw doctors, took antibiotics (that made me break out in hives) and sat in a bed or a couch fighting off possible blood infections, healing two fingers that had developed ulcers and were deteriorating and praying the murmur was benign.(It was...whew! Just a middle "broken toe" this time!) By July, I was "better," I meditated, worked out, spent time with family and friends and STILL stayed off my meds. Still, no baby. By August I was physically, mentally and emotionally exhausted. My poor "bleeding heart" was too. It began to drown..quite literally.

I began having what I thought were panic attacks. Heart racing, high blood pressure and I couldn't breathe. Walking from the car to the door exhausted me terribly. Showering was impossible and getting dressed was a marathon. Work kept me sane most days but how could I possibly teach "using your diaphragm for projection" when I couldn't take a deep breath?! Suddenly, not more than 3 weeks ago, I was being admitted back to the ER(5th time this year) for fluid around my heart and possible kidney failure. (Apparently, this is really serious) At this point I just got angry. This inconvenience was annoying the hell out of me.(More on that next week) I spent 5 days at the Heart and Vascular ICU, being poked, prodded, studied and stared at by insensitive people who couldn't understand why I looked so young.

The hospital stay gave me time to think. And think. And think. All the little broken toes were suddenly trying to tell me that they'd had enough. Yet, I still couldn't accept that, this was just going to be another inconvenience. After all, within a few hours the pain and shortness of breath were gone, friends visited, I laughed, I walked around, I ate and watched tv. I was, by all perceived standards, "fine." And yet, at some point, I arrived at a moment of clarity. Something's gotta give. I am NOT fine. This situation and these "flares" are NOT fine and something has to change. These broken toes are getting in the way of walking.

This is where I am now.(Again, 2010 was much the same I'm realizing) However, I will not approach this change as "temporary" until I "get back on my feet, sore toes and all." This is a complete overhaul of my life, for the rest of my life. I cannot and will not work full-time, I will eat what I need to eat in order to nourish my body, I will pray and love my husband and write. And for me, that is FINALLY going to be enough. This is a journey I am asking you take with me. And hold me accountable to. I have to take care of me, always, or I cannot take care of anything/one else. Understand that I am not giving into this illness, I am simply learning to live the best life I can live within my limits. And if I am ok with that, I want you to be also.

The question I finally answered for myself, and ask you to do the same for your own set of stubbed toes is this: At what point do you let all the broken toes keep you from walking? Only when they're asking you to change direction.

I'm Baaaackkkk....(Almost)

Hello again...it's been over a year and for that I do apologize, but as the saying goes: "Life is what happens when you're busy making other plans." I have a lot to catch up on. A lot I'd like to forget. Regardless, I am moving in a new direction now and believe this has been in the making for a long time. The focus of my blog is going to change a bit and I ask for your patience as I navigate through this new world of "online blogging." I still intend to spread awareness of these terrible disease(s), keep you posted on my progress and pitfalls and more importantly I hope to now provide a forum where others who suffer from chronic illness can come get support, advice, or just a good laugh cause they know where I'm coming from. Starting Sunday you can look forward to informative articles, inspirational anecdotes, my personal reflections and dreadful medical experiences, and much more. I am looking forward to sharing this journey with you and I hope that you share what you learn from me with others. Stay Tuned For: "The Broken Toe Syndrome" Best & Peace Always Jas

An Anniversary

It's been almost one year since I started this blog. At a time in my life when I couldn't see the end to tunnel. When everything was closing in on me and remission or even improvement were far off concepts that neither my mind nor my body could grapple with much less achieve. It too a lot of prayer and long, hopeless nights to allow me to make a few decisions that eventually lead me to the peaceful and much deserved "happy" place that I am in now. And I am thankful to God and my family for giving me the strength to make the tough decisions I once made so that today my life could be 100x better. But those decisions did not come without a lot of sacrifice and sadness on my part. And tonight, as I said goodbye to my former students during their promotion ceremony I was reminded of how much I gave up, not because I wanted to, but because I had to. It was a bitter sweet moment to see all my old students again, but I was so happy to realize that none of them resented me or my decision to leave. Instead they looked for me with open arms and thanked me for everything I had taught them. I realized that while I may have left them physically, the knowledge and the experiences I left them with will last a lifetime. And that to me, is the greatest gift. I can close the KIPP chapter of my life and move on to newer, different journeys knowing that for a brief moment in time I touched the lives those young people and for that, I am a better person, with or without scleroderma.

It's been one incredible year and I have only good things to look forward to. I may not ever be "cured" but I know that recovery and remission IS possible and I truly believe that I'm well on my way. To all of you who have spent the last year (few years) following me and my progress, I thank you. For your patience, kind words, prayers and love, thank you. And as I always say: I may not have gone where I intended to go, but I think I am where I was intended to be. Happy Anniversary Scleroderma (Diagnosed May 12, 2007) you've changed my life for the better.

Be still, be well.

It is solved by walking...

I know that God exists and that he is by my side because:

4 years ago walking 1 mile was very tiring and difficult

3 years ago walking 1 mile was impossible

2 years ago I couldn't walk a block without losing my breath (lung fibrosis)

1 year ago I was too busy to walk anywhere

Yesterday morning I walked/ran 5 miles without stopping:

This morning I felt no pain. This morning I felt at peace. This morning I realized that anything and everything IS possible.

Be still. Be well.

Jas