Time for a New Year

2015 was a tough one for our planet and for many of its inhabitants. For me, it was no different. Four days into the new year, I was hit with the worst stomach bug of my life. This virus weakened me so much that my eye was infected and remained so for weeks. At the same time, I was dealing with chronic gut issues and a very painful torn meniscus. I had knee surgery the second week of February and worked very hard to regain flexibility and strength in that leg over the next couple of months. To the surprise of my surgeon and physical therapist, I was still feeling a sharp pain that was similar to the one I felt pre-surgery weeks later. By mid-April, when I returned to yoga, I was struck with a new (and very scary) problem. Two days after my period ended, I began to bleed heavily every day for the next 10 weeks. (The doctor made me wait 6 weeks before he would perform a simple 10 minute test). In May, while I waited, I started experiencing debilitating migraines for the first time in my life, frequent nausea for no reason (making it very hard to try to do yoga), abdominal pain, and loss of energy. By early July, my body completely ran out of energy. I felt like I was dying. I couldn’t stay awake for more than 5 hours per day. I didn’t have the energy to say hello to a clerk or person on the street. It took me 3 and a half days to collect enough energy to go out and get groceries, after which I immediately had to go back to bed. I didn’t know what was happening to me. But I knew I didn’t want to live that way. I was ready to die.
At the end of July, I had my second surgery of the year. I had a polyp removed and the insides of my uterus blasted with microwave radiation to burn and destroy the lining. I woke up crying and confused. Part of me had thought that if they gave me anesthesia, I wouldn’t wake up. My body was too tired.
I anticipated that my energy would gradually return in the following weeks, but it did not. One night, while looking up the typical recovery time for my procedure, I read a long list of complaints from women who wished they had never had it. Many suffered from painful abscesses from pooled blood that could now not escape. I began to regret my decision.
By the end of August, I figured out that I was suffering from Chronic Fatigue Syndrome. Luckily, after posting this finding on Facebook, a fellow long distance hiker wrote to me about her own experience of contracting this disease when she was 27. It was one of the best letters I had received in my life. It reaffirmed some of the things I had been learning myself. By this time, I had occasionally tried doing some yoga at home with the result of rendering myself bedridden for the next several days or week. My body had completely lost its ability to recover. I had lost the ability to access my strength in the only way I previously had been able to access it. A simple flat walk on the beach would send me straight back to bed. I had a few remaining talks scheduled, but didn’t know how I would manage to even drive over two hours to give them. At the same time, my brain was paralyzed with a fog that I had never experienced before. I couldn’t read or write. I couldn’t even reach out for help.
By the end of October, I knew that I had to drastically change my diet in order to even have a chance at healing. I had to give up coffee, sugar, all grains, all beans, all dairy, eggs, nuts, seeds, and nightshade vegetables. Two months into the diet, I was beginning to see some improvements in my digestive tract and brain fog, but I was disappointed with my lack of progress in regaining energy or my body’s ability to recover.
I have never been this sick for such a prolonged period of time. In many ways, having a chronic illness is similar to suffering from the flu every day consecutively for six months or years. It renders your body so weak that you are largely confined to bed. There was not one day this year (or in the last 2.7 years) where I felt healthy.
I also learned that very, very few people try to understand or sympathize with someone suffering from a chronic autoimmune illness, while they¬† become VERY responsive to those who have received a diagnosis of cancer. Cancer has been very well studied, funded, and publicized, whereas chronic “mystery” illnesses have not- even though more than 5 times the number of people have an autoimmune disease than have cancer and even though those who have been diagnosed with cancer are often able to live a much higher quality of life than someone with a chronic autoimmune disease.
I wondered throughout the year if I was experiencing the worst year of my life, but the truth is, I can’t remember when I haven’t had a very tough, challenging, and sorrow filled year. Some people’s lives are filled with an exorbitant amount of tragedy and strife. The playing field is most definitely not level. On the other hand, the human spirit is capable of tremendous resilience. I feel like this illness is giving me the opportunity to turn my life around. Not only am I learning to change my thoughts, perceptions, and therefore experience in life, I am learning that good things can be found in the most difficult places. I am learning that one’s biology and early life does not determine one’s destiny- that everything in life, including the expression of our genes can change when provided with the right environment.
In this past year alone, I spent many weeks unable to see, unable to walk, and unable to move my body at all (another name for Chronic Fatigue Syndrome is System Exertion Intolerance Disease). I know very well that there can be no “shoulds” in life. Exercising (or doing yoga) is NOT good for everyone. Being a vegetarian (or any other lifestyle of eating) is NOT right for everyone. Walking or reading or engaging with others is not possible for everyone. We all have different chemistries, abilities, injuries, and illnesses which determine what is possible for us. Only we, ourselves, know what is best for us. Our own intuitions and experiences are our greatest authorities.
I am hopeful that in this coming year, I will continue to heal, to learn more about autoimmune diseases and their causes, and to use my knowledge to help others. It is projected that the number of people who suffer with an autoimmune or other chronic “mystery” illness will double or triple with every decade to come. What I have been going through is not without purpose. Neither is anyone else’s suffering.
I wish everyone good health,  hope, and an abundance of courage in the new year. And thank you to everyone who has shown me support in this past one!!


Post Surgery Day 4: Another tough one!

(Feb. 14)

Sleeping in my bed was better on my back and neck, but it was still tough not to be able to move my legs. My mood had sunken back down again. I felt very tired and couldn’t find a reason to get out of bed. I seemed to be settling into a pattern of feeling good (or bad) every other day. When I finally got up and tested my ability to bear weight on my surgery leg, I noticed that my calf hurt a lot! I probably strained it by trying to see what I could do on it when it was still too swollen. One of the indications for a blood clot is tenderness in the calf. I was supposed to keep an eye on that (as well as my body temperature) and call the hospital if I noticed anything. I was pretty sure the strain was caused by me, though.
I managed to do my physical therapy sets (I hate having to do them three times per day instead of all at once!), but spent most of the day sleeping. I did not feel good!


Post Surgery Day 3: The Reveal

Despite not sleeping much due to loud trucks removing some of the snow in the streets all night long in preparation for the next big storm, I woke up in a surprisingly good mood! This rarely happens, and when it does, I often have no idea why, but I feel thankful. It was another uncomfortable night on the couch, but my knee wasn’t in too much pain, so I only took Tylenol for pain medicine, along with the aspirin for blood clots. I wasn’t sure if Tylenol helped to reduce the swelling or not, so I decided to rotate it with ibruprofen. My better spirits allowed me to try putting weight on my surgery leg today. It felt better than yesterday!
After breakfast, it was time to unwrap the bundle and finally see what it looked like underneath! Wendy said I could do this in the afternoon. I figured that 1pm was a perfectly fine time.
I hadn’t realized that my entire leg was wrapped with ace bandages! It was a good thing that this thing was coming off because flexing my foot was causing the bandage to dig into the skin of my heel.
My ice pack (which only keeps it cool at best).
Why are my legs such different colors?
My surgery leg was locked in a semi-bent state due to the swelling. This made it very difficult to attempt to walk!
I took my first shower since the surgery, and it went very smoothly!
Then, I looked at the exercises I was supposed to do. No one told me when I was supposed to start them, but I figured that now that the bandages were removed, it was a good time to do so! I noticed that I still smelled like iodine! (Erik told me that I would smell like the hospital for a long time!)
They only gave me these few simple exercises to do for the next 2 weeks (before I saw my surgeon for a check in). My knee was so swollen and stiff that I didn’t know how I was possibly going to be able to bend and straighten my leg! (my paperwork said it should be bending normally within 3-5 days!) I started with very small movements. They told me that I was going to lose a lot of strength after the surgery, but I couldn’t really understand why. I was only incapacitated for a few days. I tried the leg raises and my injured leg shook so much. How had it gotten so weak?!
On the floor, tightening my quads.
By the end of the night, I was able to do this! I felt proud! I decided to see what else I could do… Chair pose, check! Chair pose with a twist, check! Lunge, check! Wide straddle forward fold, check! Stand on my injured leg and raise my good leg into the air (kind of!). I felt satisfied. I decided to bring my couch pillows to my bed and sleep there for the first time. It was a good decision!

The morning of my surgery

I was told that I could not eat anything after midnight and could drink water, black coffee, or apple juice until 2 hours before I was to arrive at the hospital, meaning 5:30 am for me. I had hoped to get in one last little yoga session the night before my surgery, but my intestines were hurting too much for that, so I rested on my couch for most of the evening and then ate some chocolate and almond milk at 11:45. My week of preparation for the surgery, marked with anxiety and chores, had all but come to an end. I was about to enter a new phase of the unknown- one in which I was giving someone else control to cut into my body without me knowing what was happening, hoping that the damage would be minimized. I had no idea how long I would be immobile or what level of pain I would be in. The only thing I knew was that I wouldn’t be able to do most of the things I had been accustomed to doing. Simple tasks would no longer be easy. Life after surgery is very different than life before surgery.
I lied down in my bed for a little nap, setting my alarm for 5:15 so I could sip some water before the surgery. I took a shower, got dressed, and took a picture of my knees, knowing they would never look the same again.
After a bit of last minute cleaning, I picked out a book to put in my bag, put on my coat and headed out to meet my landlord, who agreed to drive me to the hospital. (He works in the administrative offices there). I piled my crutches into the backseat and quickly brought my trash out to the bins. David had been listening to the radio and said that traffic was already heavy. People were returning to school and work after the recent snowstorm shut most places down the past two days. My seat was pitched uncomfortably forward as a result of his kids playing and I couldn’t easily figure out how to set in back. Within 20 minutes, we hit standstill traffic. “Is it usually like this?” I asked. David said yes. “So early?”. I was thankful that this was not a part of my daily routine.
“Yeah. Pretty much.” I knew I wasn’t going to make it by 7:30. I wondered if the surgeon ever got stuck in traffic as well. Maybe he would be late, too! I couldn’t fathom how they always managed to be at the hospital, no matter how much snow was falling. I decided to call the hospital and tell them I was stuck in heavy traffic, but would be there as soon as possible.
We pulled up to the front doors of the hospital (much like an airport drop off) at 7:40. “Not too bad.”
I pulled my crutches out from the back seat. David said he would see me around town. (I don’t think it occurred to him that he might check in on me after the surgery.) I just agreed, perplexed, and headed inside. I found the elevators and went up to the second floor, not knowing that the second floor was below the main floor. I then scurried down the hallway, trying to pass an elderly couple in the hallway, but ended up trapped between them instead. I realized the man was also having surgery, and felt bad about trying to get in front of him. I waited for him to check in and was then given a form to fill out. “Is there anyone here with you?”
I sent a quick text to Checka, who was picking me up after the surgery, to let her know where she should go. And then my name was called. I gathered my coat, bag, and crutches, and was led into the pre-surgery room.A nurse said, “I’m Wendy” to me.
“You’re what?” I asked her, confused because all day yesterday, during my numerous pre-op appointments, I was called by my formal name, which I absolutely hate, and repeatedly asked to tell them my name and birth date over and over and over again. I expected this woman to call me by the same name and was taken by complete surprise when she said Wendy.
She repeated that her name was Wendy. “I’m Wendy, too!”. From then on, we got along splendidly. She took me to my station, gave me the pink bag for my belongings, gray hospital socks, and a johnny I was supposed to change into. “It will be much too big for you. I’m sorry about that.” She asked if anyone was waiting for me. I told her no, and asked if she could call my friend when I was finished with surgery. “Of course!” she replied. I remember being in my recovery station after my jaw surgery for a long time and finding out that my friend Erik was not even on his way to the hospital yet. It made me upset knowing I would have to wait at least another hour for him. She told me to take my time changing and pulled the curtain closed as she left. Her words and demeanor put me at ease. I slowly changed into my johnny and piled my clothes into the bag.
Then, I remembered that I could climb into the cot and relax. I tucked my johnny under my legs and placed the thin blanket over my body, remembering that Erik was with me for this part during my last surgery. So far, I was doing just fine on my own. I looked at my socks and wondered why one was looser and went further up my shin then the other. Hmmm. I listened to the people talking in the stations next to me. On my left, was a man named Milan. And on my right, someone entered the curtained area, announcing that he was a shaver. “You’re going to shave me?” the patient exclaimed.
When Wendy returned, she took my blood pressure and temperature, and measured my oxygen levels. She then asked when I last ate and drank something. “You’re the perfect patient!” she said. She asked if I was experiencing any pain other than my knee. I paused and thought. “You’re funny,” she said. I remembered my intestinal pain last night and told her about that. She asked if I could still go through with the surgery. “Oh, yeah.” She kept calling me sweetie and even called me pumpkin at one point! This was all I needed to feel happy. She told me that several doctors would be coming in to ask me questions. The first to appear was the physician assistant. He proceeded to tell me everything that could go wrong during the procedure. “There is a small chance you could die from the anesthesia, the nerves and muscles could be damaged, your pain may not be resolved… Sound good? You still in?”.
“Sure. Sounds great. Thanks.”
“Great! Just sign here!”.
Next up was the anesthesiologist- a very large boned man, who seemed like he was of Eastern European descent. “It’s nice to meet you,” I said. He didn’t respond. He flipped through the binder and asked me when the last time I had something to eat and drink was, just as Wendy had asked. “I had a snack at 11:45 and some water at 5:30.” He asked me to tell him what I was here for. “I’m having my meniscus repaired.”
“Repaired?” he asked, eyebrow slightly raised.
“Fine. I’m having it torn out.” He asked me if I had had previous surgeries and how I responded to anesthesia. “Are you going to jam sticks up my nose? Because that’s what they did to me last time I had surgery and I was still awake! It hurt SO much!”.
“No, we won’t put anything in your nose, but there will be a tube down your throat.”
“Excuse me…?” Why didn’t anyone inform me of this before? My mind raced back to being in the hospital when the doctors pulled the breathing tube from my brother’s throat, marking his death, as well as the sore throat I had experienced after my own breathing tube was taken out.” I was not liking this at all. He said they could give me a spinal tap if I preferred. I thought about the pain of receiving such a needle in my spine and what it would be like to watch and listen to the surgery. Part of me was curious. I told him I didn’t care. “Okay, we’ll put you to sleep.” He handed me a print out about the risks of anesthesia. “You’ve probably already read through this from your pre-op paperwork.”
“No, I haven’t. They forgot to give me the pamphlet.”
“Okay, then here you go.”
There were a lot of words on the page. I felt like it would take me a long time to actually read it all, so I quickly scanned it and then said, “whatever” as I handed it back. He gave me a pen to sign it with. Then, my surgeon arrived. He stood against the curtain at the foot of my bed, as far away from me as possible. No words came out of his mouth. I still had never seen him smile and I barely recognized him, having only seen him once before. ‘This is so strange,’ I thought. ‘A man who I’ve met once is going to cut into me?’ I had been waiting for him to arrive because I wanted to say two things to him before the surgery. I wanted to tell him to please repair what he could and take out as little meniscus as possible, and to ask him to please be gentle with me. I don’t like my body being scarred. Since he wasn’t saying anything and I knew he would only be there for a couple of moments, I spoke up. “Can you try to repair what you can?”
“That’s what we are going to see when we go in there. From the MRI, it looks like your tear is irreparable. A repair would mean a much longer recovery, you realize. You’d need to be on crutches for six weeks.”
My heart sank. Neither situation was favorable.
“Can you remove as little as possible? Otherwise it will be bone on bone!”
He stared back at me blankly without saying a word.
I felt like crying but didn’t want to in front of him or right before I entered surgery. Instead, I held it in and asked him if he could be gentle with me.
A smirk formed on his face. The anesthesiologist, still flipping through the binder, smirked back at him.
“I’ll try to be gentle with the tissues,” he said.
(What about with me? Why don’t these doctors care about my whole self? I thought. Why can’t they offer a few simple words of comfort? This is not right.)
“I’ve done a few of these procedures before. Seven or eight.”
The anesthesiologist smiled at him. I laughed because I assumed it was a joke (there still was no trace of a smile on his face), but to me, it wasn’t funny. Someone WAS number seven and eight… and one and two…”.
I asked if he could tell me what had happened during the surgery afterward.
“I have another surgery to get to and you won’t even remember what I say at that time,” he quickly retorted. I felt even more despondent.
“I’m going to write “yes” on your left knee.” He then slipped out the curtain and walked away. My contented feeling was gone.
The anesthesiologist walked over to my left side and started the IV in my forearm. He said that his assistant would also come in to see me.
A brusque woman with a patterned surgical cap came in next. She looked as though she was about to shake my hand, but reached for the hand sanitizer instead. She told me that she was the operating room nurse. So far, Wendy was the only person who treated me kindly, and I wished she could look after me during the surgery, as well. The OR nurse asked me when the last time I had eaten was. Why do I have to answer these questions over and over again? Someone wrote it down the first time! She wanted to check to see that the surgeon marked the correct knee and was a bit annoyed that I had wrapped the johnny under my legs.
June, an Asian woman, came in next. She said she was the nurse anesthesiologist and again asked me when I last ate and drank. She was having great difficulty reading the pre-op nurse’s handwriting. This says you had something that begins with G…
“And… C…”
“C. Dif.”
“And something that begins with S.”
“S? Let me see that.”
“Gluten intolerant.”
“Okay, well, we won’t be giving you gluten during the surgery.”
She explained the two types of breathing tubes they use- one that goes all the way down your throat, and the other that rests just above your larynx.”
“I prefer the second, please.”
She said that is most common.
“But he said I needed a tube down my throat.”
“Hmmm. I wonder why. He’s the attending physician, so I have to follow his orders. Sometimes, they deliver medication through the tube. Maybe that’s why. They might want to give you a muscle relaxant. Let me ask him.”
Wendy came back in and I told her I wished she could be my OR nurse. “Oh, no” she said. “I’m an ICU nurse! The OR is not my thing”.
“Will you be taking care of me after the surgery?”. She said yes, which provided me with at least a little relief.
June came back with the news that there was a misunderstanding. By “down my throat” he just meant part way down. I still might get a sore throat from it, but it wouldn’t be the full breathing tube. Thank goodness! She pulled her iphone out of her scrubs to call the OR. (Isn’t that unsterile?) No one was answering. “I know there are at least 2 people in there! I told her there was no reception in here. She tried again, waiting and waiting as it continued to ring.
“Well, the OR isn’t far away, and we have time, so I’ll just walk down there and see.”
She came back and said they told her the phone wasn’t working. The anesthesiologist came back in and said someone needed to take my glasses. An envelope was found. He adjusted my IV and then, one on either side of me, said it was time to go. They wheeled me down the hall and into a large room, where several people were busy at work. It was very cold in there! A woman quickly pulled back my johnny and placed an even colder metal electrode on my chest.
“It’s cold in here!” I said. No one responded. “Is anyone else cold?” I asked after a few more moments. I wondered how they could work under such conditions.
“I am!” the anesthesiologist answered, which made me feel better. Someone said they would put some more blankets over me after they finished placing the electrodes on me.
“Okay,” I said. That seemed reasonable.