The Hard Decisions

I consider myself a truly loyal person. The relationships that I have run deep, and I protect (and mother) those that I care about fiercely.

I suspect my loyal tendencies, coupled with a large helping of come-by-it-honestly stubbornness, is part of the reason why it has taken me a year to reach the point of the decision I made this evening. I’ve been on the threshold of I-need-to-do-something-about-this for a couple of months, but I had finally reached my limit.

Of all of the doctors that I see to manage my healthcare, there are two that I hold in the highest esteem. These two have seen my at my absolute worst (physically and mentally), and have done the hard work to put me back together. They are the doctors who oversee and manage all the others, and they are the ones that often get roped into giving me advice on decisions that I need to make medically. My vascular surgeon and my rheumatologist both met me at my bedside in February of 2010 and have walked the long road to recovery with me.

Last spring, my rheumatologist made the decision to move on from the university where I met her. (My vascular surgeon luckily stayed put. For what I hope will be a very, very long time.) While I was devastated as a patient, I was proud as person, because it was absolutely the right decision for her. However, I was so very spoiled by the level of care she provided. In the long year since her departure (a year to the day today, as she just reminded me on the phone), I have worked with a prominent and highly-educated attending and a wonderful fellow. However, the quality of care that I was accustomed to was hard to re-create.

About two months ago, I had a major stressor at work. It lasted for several weeks, and I will be the first to admit that I did not do a good job of managing my Behcet’s while I was wrapped up in work. I didn’t sleep much and didn’t eat well. I threw my body for a loop, and it responded with an angry Behcet’s flare. I started having symptoms (minor in the continuum of my disease history) that I had not had in years. I waited to reach out to my new doctors until my next appointment, hoping to get everything back under control myself. However, I couldn’t, and I entered the doctor’s appointment hopeful that I would receive a response comparable to the degree of the symptoms. However, I left the appointment feeling much like I had before the worst of my illness reared its ugly head in 2010. Then, I was seeing a rheumatologist whom I liked, but who refused to research a method other than the one-size-fits-all treatment protocol that he was sure would work for me if we gave it a little more time. His lack of medical aggression caused me and those I care about so much heartache. I knew leaving the appointment that I was disappointed and very worried, but I chose to push those fears aside and carry on.

A couple weeks ago, I began having a new, unknown, and alarming symptom that I had not experienced before. I contacted my doctor’s office after realizing that it was not going away on its own, and was dismayed at the results. Nothing was going to be done, and I was left feeling like I was out of options. I liked my doctors; they were good people, but they weren’t going to fix me.

I gave it a week, then googled my rheumatologist’s name. I read about her research at the new university and the amazing things she was doing. I clicked on the “contact” link, but exited out of the email without writing anything. I thought about it more, then finally broached the subject with a close friend. They listened and encouraged me to send the email. I waited a couple more days, then brought up the subject with my mom. She listened to me describe what had been going on for a couple of months (I try to not worry my family needlessly, so I hadn’t mentioned having symptoms yet), then encouraged me to email my doctor.

Once a brief email “checking in” and requesting a “quick chat” was sent, I felt like a weight had been lifted off of my shoulders. In her typical fashion, I received an email back the very next morning, and a phone call the next day. I’m transferring back to my doctor’s caseload. While the drive to appointments will be long, I feel more confident than I have in a year. I am lighter because I know that I’m not fighting this medical fight without her valued opinions anymore, and I know that I can trust her to provide me with the most up-to-date and effective treatments possible.

My advice to other patients? Trust your gut. And, just like everything else in life, when you have a relationship that’s worth fighting for, put some effort into it.

2013: A Year in Review

2014 is just beginning, and with it comes feelings of hope and freedom. An important aspect of living in the present is understanding and accepting the past, so here’s my 2013 year-in-review post:

2013 was a kind year to me. I achieved many personal and professional goals, and none of those would have been accomplished if my Behcet’s hadn’t cooperated. I began taking a new drug (Cimzia) in February, and it has allowed me to live a year without any new major complications from Behcet’s. I haven’t had surgery in 18 months, and I’ve successfully been off of Prednisone for 2 months (except for a brief dose to get over some bronchitis / pneumonia). This is now the longest that I’ve been away from that necessary evil in 5 years, and it feels wonderful. Being able to sleep through the night, coupled with not feeling like you’re on an emotional roller-coaster without a seat belt, certainly gives one a new outlook on life.

I learned a lot in 2013. I started the year by attempting to meet more people with Behcet’s. I quickly found that (and forgive me, there’s really not a way to say this that sounds any less uppity, because I’ve tried) most people with Behcet’s are very different from me. I’ve realized that the majority of people with Behcet’s who belong to secret Facebook groups or frequent private message boards for other patients have never experienced the worst sides of the disease. Many people simply have not been through 10 surgeries and felt the rock-bottom pit-in-your-stomach feelings that come with 6 months of bed rest. Many people have not had their mother give them a shower at 21 years old because they simply couldn’t move for the feet of incisions that covered their body. I’m not trying to dramatize what I’ve been through, but it did happen. And because of that, I choose to live every day doing things that free me of that time. So, I’ve learned that secret Facebook groups and message boards aren’t for me. For me, I need to be able to get up and go to my job because it’s Monday, and that’s what I do on Mondays. I need to go watch Survivor (yes, it’s still on) with my friends on Wednesdays, because it’s Wednesday. I need to go get dinner with a dear friend on Thursdays, because it’s Thursday. No excuses, no whining about my leg hurting, because there have been Mondays when I didn’t get to go to work because I was in physical therapy all day. There have been Wednesdays where I couldn’t see my friends because I was in ICU. There have been Thursdays when I couldn’t eat because I had been placed on NPO until I knew if I was going to need surgery. However, I can say that some people I have met through online research are simply wonderful. There is one Behcet’s blog in particular that I still follow, behcetsland.blogspot.com. This blog is hosted by Nikki, a fellow Behcet’s patient, and it chronicles her life with the disease.

I grew a lot in 2013. I saw a psychologist for several months. I needed to finally process and move on from the feelings of anger, guilt, and anxiety that Behcet’s has brought me. I realized that much of my constellation of symptoms mirrored that of a patient with PTSD, and I worked very hard to move through the emotions that came with this, instead of burying or ignoring them. I am proud to say that it no longer takes me 3 – 4 hours to fall asleep at night. While I still feel horribly badly for what my family and close friends went through while I was at my sickest and continue to worry about while I am healthy, I know that I am not responsible. I am still angry over what has happened; I am still angry that I have this disease; I am still angry that it has changed my life. However, instead of being an anger that is so strong that it is debilitating, it is now a slight smoulder in my chest that I use to fuel me when I need it most. Do I still have bad days? Yes. Absolutely. But the bad days are manageable. I feel much more at peace with my life, and that gift is priceless.

With all of the change that 2013 brought, I am excited for 2014. Here’s to health and happiness!

Revisiting “Shoes”

If you’re not a regular follower of my blog, you can find the link to my original post, “Shoes”, by clicking here

 

It’s now been three years since I had the last major surgery on my right leg in June 2010. Although I feel that my leg will always be a source worry, I think that the range of motion, scars, nerve sensation, and general muscle strength that I have now will be fairly stable going forward. After three years, I don’t think that I can expect much more in terms of recovery.

In the past year, I have struggled with avascular necrosis (AVN for short) impacting the bones in my foot. I have worn Danskos almost exclusively for 10 months, and most of the sharp pain has diminished. I’m left with minor aches and the general feeling of having a stone in my shoe where a joint has collapsed. 

When I moved into my house, I put all of my high heels in the closet in the guest bedroom. I felt that having the shoes in there kept them out of sight for the majority of the time – and therefore less of a reminder of what used to be – but they were present enough to make me hope for the time where I could wear them again. 

Tonight I realized that today is just mere days after the three year anniversary of a surgery that left me with an incision from my knee to below my ankle. I went into the guest bedroom and looked at my heels. I wondered what I should do with them, then decided that I should try them on. I tried on my favorite night-out-on-the-town shoes first, and quickly discovered that I no longer have the control to fit my foot into the shoes. My “bad” toe bent uncomfortably in the shoes, and I had no way of fixing it. Next, I tried on a pair of shoes that I frequently wore to work on days where I knew I was going to have a meeting or important event. Those shoes had a modest, inch-and-a-half heel, and while not the most comfortable, they were manageable. I continued trying on all of my heels, and came to the conclusion that my days of wearing 3″ stilettos were behind me. I no longer have the strength in my foot, muscle control in my toe, and general flexibility to walk in those shoes. 

I sat in the floor, surrounded by shoes that serve as a very tangible tie to my past, and wondered what I should do. I began sorting the shoes into two piles: one pile of shoes that I felt had a modest heel that could probably be worn for short periods of time while I was mostly sitting (like out to dinner), and a second pile of shoes that I knew I would never be able to wear again. 

I put the latter pile into a bag and texted my cousin. She’s about to turn 18, just graduated from high school, and is venturing into the college world. I so vividly remember that summer between high school and college – it was so full of excitement and preparation, nerves and adrenaline, wonder and anticipation. I remember that I had everything figured out – I knew exactly where I was going to college, how long it would take me to graduate, and what I would do after graduation. I knew that I wanted to get married and have babies (not that I think that’s what every person should do, it’s just what I wanted for myself). I remember having a plan and a timeline, and having the hope and excitement that comes with both.

My cousin, who I am so proud of, is now experiencing that same summer. I decided that I would give her the heels that I can no longer wear. The dreams and aspirations that I had the summer between high school and college have grown and changed so many times in the six years since. The shoes that I wore for a couple of years before Behcet’s changed me no longer fit the life that I have made for myself today. But, a whole new world is opening up for my cousin, and I want to pass along something to her that meant so much to me.

In the end, it’s not about the shoes at all. It’s about growth and the realization that I don’t have to go back to where I was; I can dream a new set of dreams. The innocence of youth may be gone, but the freedom of letting go is at my fingertips.

The Go-Bag and the Manila Envelope

I left work early today and have the rare privilege of not having any scheduled activities for the weekend. It’s not often that I get a weekend to myself to just be and enjoy my house, but usually once every couple of months a weekend like this rolls around. I typically spend my time catching up on non-work-related-reading, cleaning out my DVR, and doing some deep-cleaning by going through closets and cabinets. 

Tonight, I found myself cleaning out my entry-way closet. I store my cardigans and jackets there, along with gift wrap and the vacuum. On the top shelf sits a pink bag with my initials monogramed onto it. I believe I received it as a high school graduation gift, but it may have come into my possession some other way. This is my go-bag. Every few months, I check the go-bag to ensure that the toothpaste hasn’t leaked, the clothes still fit, and it has shoes appropriate for the season inside.

Twice I have found myself being admitted to the hospital through the emergency surgery route. Both times I was helplessly unprepared for a hospital stay, resulting in my mom or my friends going through my possessions and attempting to collect life’s little necessities. Now, I keep a little pink bag with all of the necessary items in a space that would be easy for anyone to pick up and bring to the hospital.

I have not been hospitalized for more than a day since early 2011, a fact that I am most grateful for and attribute completely to the careful watch of my doctors. However, each time I open my closet, I am reminded of the fact that on any given day, I could be reminding someone I love where the go-bag resides. Those who come into my home and hang up their jackets rarely ask anymore what is inside the bag – they’re all well-versed in my crisis plan and know the steps that must be taken should I end up not coming home one night.

Also in the top of my closet lies a manila envelope. This envelope contains information for a life insurance policy that I carry for myself, my power-of-attorney and living will, and a letter to two of my uncles. I have not yet been able to steel myself to write letters to my parents, brother, or close friends. Instead, I decided to write two letters to two of my uncles, leaving them instructions for carrying out my last wishes should the unthinkable happen.

These weighty topics are not those that most 23 year olds have ever given much thought to, but these are issues that I consider even at times when my health is at its best. Occasionally, I will glance at the bag and envelope and realize how far I have come since my health was in dire straights in 2010. Other times, I will glance at the items and feel resentful for the fact that I have to take such precautions. Either way, I want to be ready for what life throws at me next. Being prepared makes me feel like I have more control over what happens next and is a coping strategy that I find comforting and meaningful. So, until the seasons change again, I am ready.

One of my Favorite Foods

I love to drink fruit smoothies. Ulcers or no, they are a staple in my diet.

For any patient on Prednisone, the topic of diet is a tender one. This is what works for me:

I try to eat as healthy as I can, because I genuinely believe that “clean eating” can make me feel better and more in control of my health. I also give credence to the argument that a hundred years ago, no one was eating fast food and sodas multiple times a week, and many diseases and disorders that Americans deal with on a regular basis were mostly unheard of. I will leave it to the Ph.D.’s in the world to figure out whether a causal relationship exists between those facts, but I will say that it makes *sense*. So, I choose to eat clean when at all possible. I still eat out multiple times a week, but rarely in chain restaurants, and mostly when I know where the ingredients are coming from. 

So, I frequently replace a meal (usually breakfast / lunch) with a fruit smoothie. In high school, I worked as a manager for a regional smoothie restaurant. I learned how to mix smoothies effectively, so here are the steps I take:

— 1. Mise en place: Before you begin, go ahead and wash, peel, and chop your fruit as needed. I do this on the day I do all of my grocery shopping to ensure that the ingredients are ready (especially since I tend to blend a smoothie while I’m one the way out the door each morning). 

— 2. Use water, tea, or fresh lemonade to fill the blender just to the base of the blades. This will probably end up being about half of a cup of liquid, depending on the brand and make of your mixer. (I use a middle of the road, name-brand, glass blender that I got on clearance a few years ago for about $40.)

— 3. If you choose to use any sweetener, add it directly to the liquid and allow it to dissolve. Using artifical sweeteners will cause air pockets, so be prepared to frequently take the blender off of the base to tap out the air pockets. I’ve found that the best sweetener to use is turbinado, a natural, unprocessed sugar that is easier for our bodies to process.

— 4. Next, add any yogurt that you want to use. I choose to use whatever brand of organic Greek yogurt is on sale for the week, and usually I just buy plain yogurt since the fruit will add plenty of flavor. I typically add about 1/2 c., as any more makes the smoothie too chalky for me. (A 1/2 c. of the brand I use most frequently is about 25% of the recommended daily intake of protein.)

— 5. Add in your fruit. I typically use 1/2 – 3/4 c. of strawberries, plus 1/4 c. of two of the following: mangoes, pineapple, blueberries, watermelon, and kiwi. Typically, I will steer clear of the pineapple if I have a set of mouth ulcers because it is more acidic. Make sure your fruit is at refrigerator temperature – if you’re grabbing some fruit from the freezer, stick it in the microwave for 20 seconds to ensure that it will blend easily.

— 6. Add in the ice. I use about 2 – 2 1/2 c. of ice per smoothie. I make enough to fill up a large Tervis tumbler for the road and a small glass cup for me to drink while I’m getting ready. 

— 7. Blend. I typically blend my smoothie for 30 seconds – 1 minute, depending on the fruit I’ve added. 

I hope that helps someone out there; when I get mouth ulcers frequently, I rely more on smoothies, since they’re easy to drink and can be modified to ensure that I’m getting plenty of the nutrients that my body needs to heal.

The Worst of Times and the Best of Times

When I’m doing well, I have a hard time communicating with others in the Behcet’s community. Not because I am not empathetic to their struggles or want to help them navigate this journey any less, but because when I am doing well, I want to live my life with a semblance of how it used to be, before Behcet’s happened to me. It’s a selfish motive, and I am not a selfish person. I spend all day, every day giving back to my community and my family. But, in this one sense, I am selfish. 

To better help others understand why I am so protective of my “remission” time (in quotations because I never really know what Behcet’s is doing internally, I can only go by the outward symptoms), I would like to tell the story of the worst of times, the absolute lowest part of this journey to date. 

On Easter Sunday 2010, I was taken into a room for a routine procedure. The day before, I was lying in a bed in the ER with a police escort, because the man in the bed next to me had just killed two people. Both victims had been taken to the same hospital, and said hospital was concerned that the victim’s families may find out what room the murderer was in and seek revenge. And, since I was in the first bed in the room, I was given a police escort throughout the day. Of course, I knew none of this, only that my dad seemed even more worried than he usually was in the ER with me. He frequently left the room to speak to the officer, and I was too sick to be worried about the fact that there was an armed officer outside of my door who also went with me for my tests. 

That evening, I was mercifully admitted and transferred to a different unit after being told that I had yet another set of blood clots in the arteries in my right leg. I had surgery about six weeks prior for the same thing, and still had those incisions and an open fasciotomy to care for. The doctors decided that the best course of treatment would be to perform a minimally invasive procedure through my femoral artery and dissolve the clots with a scope. It would mean a small incision in my groin, but no major surgery. Since it was late on Saturday, they procedure was scheduled for the next morning. And, since it was fairly routine, my doctors were allowing another doctor to perform the procedure.

Easter morning, I was rolled down to the procedure room. Unlike other times, I was the only patient, so I passed my time cutting up with the technicians who were preparing me and the supplies. The doctor finally arrived, and I was allowed to remain awake so that I could talk to him throughout the procedure. I remember the initial incision and placement of the scope going as planned, but a few minutes later, I remember feeling intense pain and pressure in my foot and calf. I began crying and told him that something was wrong. My blood pressure skyrocketed, and I was given more drugs. I began screaming as the pain became too intense to bear, and the doctor sternly told me to be quiet. I told him over and over that I knew this pain, and that the clots were blocking bloodflow to my foot. He continued with his procedure, and I continued screaming. He asked the anesthesiologist to give me more medications to relax me, and the anesthesiologist said that he had maxed out all of the medications. I screamed for what seemed liked hours while the doctor worked, until my mom came running into the room. She was obviously not prepped for surgery, and the nurses attempted to remove her. She removed the sheet off of my foot, and then doctors then saw that it was white and without bloodflow. They immediately closed the incision and paged my doctor to come in. I was sent into pre-op, still screaming and begging the anesthesiologist to put me to sleep so that I could not feel the pain. There were papers to sign, and within half an hour, I saw the familiar faces of my surgery team waiting for me in an OR room.

I woke up hours later, and was told not to move. I had a catheter going into each femoral artery delivering medication, and moving would displace them and cause me to bleed out. I was in an ICU room, and I could only have one visitor at a time. That visitor had to scrub in and wear protective clothing, since my incisions were open. I was not allowed to eat or drink, since I could have to go back into surgery at any moment if the worst happened. A nurse allowed my mother to give me three spoonfuls of ice chips after I had been lying there for 24 hours. The pain in my legs was intense, since I still had inches of incision from my previous surgery and an open fascitomy that needed bandage changes regularly. The pain in my back and hips was intense, as I was lying in an awkward position at an awkward angle. I laid like this for almost 48 hours before being taken back into surgery to have the catheters removed. 

About a year after this happened, I went back and read emails that I sent and received from friends and family during this time. Only then did I realize the gravity of the situation that I had been in, both mentally and physically. Thankfully, I had a wonderful vascular surgery team who (again) ensured that I regained my health with no lasting damage.

Those two days that I spent lying on my back in an ICU unit were the worst days of my life. So, when I am given merciful breaks from the symptoms of Behcet’s, I choose to spend my time away from the Facebook support groups, blogs, and emails that revolve around the disease and reclaim some of my life. I am enormously thankful for days when I am feeling good and only have scars and medications to remind me of where I have been; I don’t know how I would handle living with Behcet’s if I was not given such merciful vacations from the reality of this disease.

So, as tomorrow is Behcet’s Awareness Day, I want to thank my support group for being there, and I want to honor those who will not be feeling up to celebrating much tomorrow. For those who are, let’s spend the day giving back to those who are not feeling well. Send an email, send flowers, plant a tree in someone’s honor. We all know how much those small gestures mean, and we never know when the tides may change and we are once again on the receiving end of well-wishes and prayers. 

Prednisone.

 

When taken orally, the pills are tiny. Who knew they could wreak such havoc on my life?

I’ve taken Prednisone for 4 years now, with two small 3-month breaks. When at my medical worst, I’ve taken as much as 40mg of Prednisone a day. Now, my baseline is 5mg. I have to titrate up when I flare, and then titrate myself back down once my symptoms subside. At 5mg, I don’t really notice the Prednisone. But, when I have to increase to 15 or 20mgs, I see a substantial impact on my quality of life.

Typically, the side effects that I get from Prednisone include insomnia, increase energy levels (the one value-added side effect!), increased appetite, and mood swings. The insomnia and mood swings go hand-in-hand. When I don’t sleep, I become irritable and foggy. And, Prednisone typically makes me feel angry. Irritability and anger don’t make for nice bed-fellows.

I manage the mood swings naturally and attempt to minimize the damage to those around me. Sometimes, that means not replying to a text message for a few hours, taking a walk, or deep-breathing. But if the length of time that I have to take increased levels of Prednisone is beyond a couple of days, these methods don’t always work into my lifestyle. At those times, I’ll try to get away for a few days or hang out at my house more.

If my methods of self-regulation fail and I do commit social grievances for those around me, I take responsibility for them. I know that I’m not myself (and most of those around me do, as well), but I don’t excuse the behaviors. I admit where I’m wrong and work harder to prevent it from happening again. I do try to educate my family and friends about the effects of Prednisone so that when I’m on stronger doses they can be a little bit softer in their approach.

Like every other aspect of this illness, I try to be as data-driven and educated as possible. Below are a few articles (there are many) that discuss the relationship between Prednisone and affect. Hopefully, they will help someone else who is in a similar situation.

1: http://www.ncbi.nlm.nih.gov/pubmed/10619339 “The Psychiatric Side Effects of Corticosteroids.”

2: http://www.ncbi.nlm.nih.gov/pubmed/15014624 “Mood and Cognitive Changes During Systemic Corticosteroid Therapy.”

3: http://www.ncbi.nlm.nih.gov/pubmed/9493946 “Mood Symptoms During Corticosteroid Therapy: A Review.”
4: http://www.ncbi.nlm.nih.gov/pubmed/2246106 “Exogenous Corticosteroid Effects on Mood and Cognition: Case Presentations.”