To *That* Girl

To the woman who has the option of either working full or part-time, or being a stay-at-home mom, and switches between the three at least yearly.

The the woman who has multiple healthy, typically developing children and mentions that “maybe you being infertile isn’t such a bad thing”.

To the woman who is married to someone who provides for her and their children and tells you that “someday you’ll meet someone who understands”.

To the woman whose definition of “sick” is a sinus infection.

To the woman whose definition of “tired” is the feeling you have when you wake up 20 minutes before your alarm clock goes off or miss your morning coffee.

To the woman whose definition of a “medical expense” is Benadryl.

To the woman who has a hard time scheduling her annual dental *and* gynecologist appointment, because that’s just too many doctor’s appointments to remember. 

To the woman whose definition of “chronic pain” is the old volleyball injury that causes her knee to act up. 

To the woman whose entire hospital experience is based off of visiting her grandparents and giving birth.

To the woman who always asks, “I can’t remember, is the MRI the one for your heart or your brain?”

To the woman who responds, “You have to give yourself shots every day? I could never do that, I don’t like shots.”

To the woman who asks you why you’re yawning, and after you mention you started a new med that makes you feel tired, responds with, “I don’t know how you do it. I can’t work and keep up with my laundry, and I don’t have to deal with what you do.”

To the woman who texts you, “What’s the name of that disease you had in college? I saw something on the Today show about mouth ulcers.”

I am so grateful everyday for the gift of my health, because I know what having your world turned upside down feels like. Please, stop raining on my parade. 

Cimzia: Injection #2

Yesterday afternoon, I took my second round of Cimzia injections (the first three rounds are all 2 injections each). I fell asleep on my couch around 8, moved to my bed around 9:30, and woke up at 8:30 this morning. 

Obviously, I feel tired, but otherwise I don’t have any major complaints. I was itchy a few minutes after taking the injections 2 weeks, ago, and that happened again yesterday. I have a minor headache at the moment (2 weeks ago, it lasted for 3 days), but nothing that is impacting my day. 

I’m very grateful for the opportunity to try a drug that the doctor’s I have trusted for 3 years believe will be effective for me. I haven’t had an ulcer in about a week, and I am grateful to finally be able to feel confident that vasculitis is not wreaking havoc internally, as well. 

Hopefully, this round of injections is as easy to deal with as the last!

Hope (Or: Cautiously Optimistic)

So, recently big things have been going on. I received an email from my rheumatologists office that a PA (prior authorization) for a drug called Cimzia had been faxed to their office. Funny thing is, I’ve been trying to get Cimzia for about 6 months now.

First, in July, I developed antibodies to Humira (I had been on it for about 18 months) and my rheumatologist wanted to try Cimzia. Cimzia is a TNF-inhibitor that costs around $50k / year, not exactly something I can just write a check for without some help from my insurance company. 2 appeals and 3 denials later, I was on Enbrel. Enbrel never really worked for me, although I and everyone around me really wanted it to. I continued to have flares of the symptoms I could see (ulcers, skin lesions, etc), and I spent my time constantly worrying about the possibility of symptoms that I could not see. Although my rheumatologist tried her best to reassure me, you don’t walk away from 11 surgeries with a great deal of confidence in your body to do what it’s supposed to. 

Once we knew the Enbrel wasn’t working, my doctor tried again for Cimzia. And again we were denied. And again we appealed. And again we were denied. At that point, I was growing increasingly concerned about not having anything to control the Behcet’s, so we submitted a prior authorization for a different TNF-inhibitor (and by “we”, I mean the saint of a nurse who works on my case).

Then, I got the email that my Cimzia had been approved. I’m not going to lie, I got the email on a Friday while sick on my couch with a second bout of flu in a two-week time frame, and I didn’t really believe it. I thought they had just typed the name of the wrong drug. I emailed my rheumatologist, and she email back on a Sunday (she’s also a saint!) that she would look into it. On Monday, I got the call that it was a PA for Cimzia! Apparently, an independent review board had reviewed my case and reversed the insurance company’s decision!

Now, after months of waiting, it was time to do my work. As glad as I was for the medication, and as hopeful as I was for the remission that seemed to be within grasp, I also knew that I was going to be injecting some pretty nasty shit into my body.

When I started the Humira, I spent about the first 2 months being exhausted and feeling pretty low. After that, my body acclimated and it was fine. For the first few months I was on Humira, I did my injections on a Friday night or Saturday morning, and then slept off the initial side effects for the rest of the weekend. This worked well from a physical health standpoint, not so much from a mental health standpoint. I remember one day where my good friend came over, and I didn’t even get off of my couch while they were at my house. I just felt tired.

The day came to inject the Cimzia. I injected both doses on a Saturday morning, getting the initial bad taste in my mouth and dizziness combo that I was used to. By Saturday evening, I had a headache that was unresponsive to medication, but I knew the Cimzia was working. In the next 36 hours, I slept for 26 hours but resurrected myself and went to work on Monday morning. I felt foggy until Thursday, but I’ve been doing well since then.

As of today, I haven’t seen much of a change in my physical symptoms, but I have so much hope that it’s coming. The first three doses of Cimzia are double doses, so I am very anxious to see how I feel after the next round. I take the meds bi-weekly, so my next dose will be next Saturday. 

For those of us living with a chronic illness, hope is what gets us through each day. However, I can honestly say for the first time in awhile that I feel as though the hope that I have is joyful. I’m excited to see what the coming weeks bring and how my body will respond!

Forgetting

I’ve had the flu twice in the past two weeks, so today was a catch-up day at work spent responding to a mountain of emails and doing a ton of house-keeping duties, in addition to my daily tasks. 

I’m going to be starting a new immunosuppressant soon, and my doctor actually emailed me about it yesterday. Today, I forgot to email her back. Not because it’s not a priority, but because I was busy and didn’t think about Behcet’s.

What a huge accomplishment! If someone had told me three years ago that I would be able to go through a 10 hour workday and not think about my leg, my body, or Behcet’s, I would have told them they were crazy. It’s amazing what a few years of perspective can do!

While I was laying in a hospital bed on bedrest in 2010, I dreamed of being able to go about my daily life and not think about my health. Today, that was a reality. It’s something to celebrate!

Image 

(Me with my little brother in 2010.)

What if I could ask you only one thing?

I’m a good person, and I work hard to be caring and compassionate. Every once in awhile, though, advocating for myself takes on a different form.

Once, in 2010, I had been out of the house for a doctor’s appointment, and my mom had taken me to a restaurant to meet some family friends. I headed into the restroom, where there was a woman replacing some of the paper towel rolls. I headed into the handicap stall, because I had incisions all over my leg, and the handicap stalls have taller toilets (ergo, less pulling on already tender staples). I also had a WoundVac attached to my lower leg, so I needed to be able to manage that. While I was in the bathroom, an older woman entered the restroom and, upon seeing the handicapped stall occupied, made a comment about how restrooms really needed more than one of those. The employee made a comment along the lines of, “Well, we wouldn’t if people who didn’t need them stopped being so lazy.” In all my Prednisone energy, I left the stall and pulled up my pant leg so that both the employee and the elderly woman could see my WoundVac (the fasciotomy was covered by it), washed my hands, and left. I’m sure they muttered something, but I don’t remember what it was. 

People can be so critical of what they don’t understand, and that can be hard for others to explain things, when they themselves are suddenly thrust into a situation that they never imagined. I work in a field where I am constantly interacting with people, and I have learned how to field a lot of different questions.

— Category 1: “How are you feeling?” For this question, we need a flowchart. IF the request has been made sincerely and not as a result of good manners, be honest, but filter. It also helps to give the person something they can do to help (something small, along the lines of “I’m trying to brainstorm new smoothie recipes”); it makes the people who are sincerely asking (usually family or close friends) feel less sad and more like they can be involved. IF the person is asking as a courtesy, give them the generic, “I’m doing okay. My doctors are taking good care of me!”. I’ve learned that those people are not the ones to vent to, otherwise you’ll get stories of their mother’s neighbor’s cousin who has eczema on their right knee.

— Category 2: “Aren’t you hot? Why do you wear jeans or slacks all of the time?” I choose to cover my scars, because they can be a lot for people to take in. Others’ rebuttal usually is similar to, “I had mole biopsied on my back, but I still wear a bathing suit.” When I hear this, I always bristle and end the conversation quickly with a “I’ll think about it”, otherwise I’ll say too much.

— Category 3: “It looks like your moon face might be getting worse.” Yes, one of my extended family members actually said that to me. She was trying to be helpful and convey concern, and it came out more harsh than she intended. Somehow, between the surgeries, and the doctor’s appointments, and the medications, my personal life became everyone else’s business. I’m all for being healthy, and have been focusing hard on getting my body back in the past months, but 4 years of Prednisone takes its toll. When people make comments about my weight or my physical appearance, it hurts. It may be a side effect of my illness, medications, and the mental strain I’m under, but it’s not everyone’s business. These kinds of questions are completely out of line, and I always terminate the conversation with a “I’m managing everything to the best of my ability.” Luckily, I don’t have stretch marks from the weight anywhere except my inner thighs (they’re actually on the scars), so I don’t have to field questions about how I got those. 

In general, I’ve learned that the best way to handle intrusive questions is education and advocacy. Educate those around you about your illness and what your daily life is like, and advocate for yourself when misconceptions arise. Your family and friends want to help, they just need to know how to bring it up.

Why I don’t like “The Spoon Theory”.

“The Spoon Theory” is a popular article among those living with a chronic illness; however, I find it generally offensive. Yes, it may help to explain to those unfamiliar with my daily life the amount of time I have to spend daily managing my illness, but it comes across as attention-seeking and dramatic. My life has been full of more than enough drama due to Behcet’s for one lifetime, and I don’t care to view every task, no matter how mundane or meaningful, through the eyes of Behcet’s,

Behcet’s isn’t my entire life, it is simply one facet of my life. Spend a day in my shoes, and you will quickly realize that I spend my days juggling a thousand other responsibilities. Yes, I have to follow doctor’s orders, take my meds, manage my primary and secondary symptoms, and deal with chronic pain, but I cannot allow that to control my life; I choose to be in charge of my illness, instead of letting it dictate my life. I don’t want to wake up and put limits on my day – I want to see how much I can squeeze into it. I have spent months at a time on bedrest; I have been hospitalized for weeks at a time; I’m constantly changing meds and adjusting to new side effects; I know what it’s like to have your life stopped by an illness. I have tasted that, and I cherish each day that I do not have to endure those conditions.

 I go about my life, and Behcet’s conforms to my lifestyle. Yes, I make accommodations, but I do everything I can to not allow one facet of my life to affect the others. Obviously, if I’m recovering from surgery, I will have limitations. The first month on an immunosuppressant requires me to limit my activity. But the rest of the time, I pack up my meds and go about my business. Flares or no flares, I have things to do. People rise to the expectations that you set for them – I choose to keep expectations for my life high. 

The Ugly Days.

I hate them. They’re the days you just really feel like shit. The days that the weight of the world is on your shoulders, and you can’t help but take it out on unsuspecting loved ones who cannot possibly understand, because you have done everything you can to protect them from having the information they need in order to understand.

They were daily while I was on bedrest; I expected too much of myself, my body, and those around me, and everyone suffered because of it. They became less frequent as time progressed, but they returned this spring with a vengeance when my body refused to cooperate. They are the days that I have fought off for the entire fall; the days that I’ve been in counseling to combat; the days that I have spent countless hours fighting against with positive thinking, deep breathing, and every other possible path to acceptance.

But they still happen. No matter how much work I put in, no matter how much support I have, no matter how far I have come. I still have the ugly days. It’s exhausting.

I don’t want to feel this way – I want to be the picture of a 20-something who can juggle a chronic illness and a full-time job. I want to be the adult woman who can control her emotions and handle what life throws at her.

My theory currently is that I have found a psychological homeostasis with the day-to-day dealings, but when an additional stress is piled on top, I buckle. It’s less frequent than before, but it still happens. As much as I don’t want it to, as much as I try to prevent it, I buckle. 

This one will pass. Until then, I’m trying to minimize the damage and implement the techniques I’ve been practicing for such a time as this. 

The First Days

I will never forget the day I was diagnosed with Behcet’s – February 19th, 2009. I had a particularly bad case of genital ulcers, and my OBGYN was not able to work me in. I had been seeing the same OBGYN for about 7 years, for treatment for the ulcers and some pretty nasty cramping and cycle issues. We had a love / hate relationship – when I had first visited him at the age of 14 for genital ulcers, he had insisted I was just lying about being sexually active and contracting Herpes. He told me that it may be a different condition, but he had only seen one other patient with the condition while he was practicing medicine, so I just needed to be honest.

Over the years, I had visited him several other times for cramping, heavy bleeding, and irregular (and generally awful) cycles. He had seen me only a few months before when I was practically bedridden from cramping and diagnosed me with an arcuate uterus, and we had been on better terms since then. But, since I wasn’t particularly attached to him and really wanted answers for the recurring ulcers, I made a call that changed my life. At the urging of a friend, I called another OBGYN, one who specialized in high-risk obstetrics. This doctor was able to see me within hours, so I readily took the appointment.

Going into the office, I filled out pages of paperwork with my various medical issues, and waited. I was only about 2 months post-op from my first set of clots, so I was still learning how to navigate giving my medical history to the nurse. When my doctor entered the room, I told him about my genital ulcers that had been plaguing me for my entire teenage years, and he began to ask questions. I told him about a retinal detachment that happened my senior year of high school; a seemingly random arterial clot; my sordid history with my menstrual cycles. He continued to ask questions, and then patted me on the shoulder and told me he would be right back. He returned with a single sheet of paper, and gently told me that he thought I had a disease called Behcet’s. He wanted to do some bloodwork and get me in to see a couple of other doctors who could confirm or reject the diagnosis. He handed me the single piece of paper – the only page in any of his med school textbooks that gave information on this mysterious illness, and cautioned me against using internet message boards when I did my own research. He also gave me a prescription for Lidocaine ointment, which was the first time that a doctor had ever validated the physical pain that went along with my ulcers. Sidenote: For anyone who has not discovered this gem, Lidocaine ointment is the only thing I have ever found to help with the pain of the ulcers. No more squirt bottles or immediate baths after urination, just use a little of the Lidocaine and it’s almost as good as new. For someone whose ulcers tend to be more like gaping, weeping craters, this changed my life!

I left that doctor’s office feeling happy because someone had finally given me an answer. Someone had finally said that things like this didn’t happen to everyone. Someone had finally connected all of the “random” medical issues I’ve had and put a label on it. I assumed I would get some bloodwork back, see the other doctors, and pop a pill each morning, and then get my life back.

In the parking garage, I read the page that talked about Behcet’s. It seemed to describe me, and it didn’t seem to be very horrible. I remember calling a dear friend and saying the now-ominous sentence, “I mean, it can’t be that bad – there’s only one page in a medical textbook about it.” I called my parents and told them. They reacted differently – they became very worried and had a thousand questions whose answers were no where on my sheet of paper.

In the next few days, I got calls from the doctor’s offices that I had been referred to, and oddly enough, both receptionists said something along the lines of, “Dr. X is pretty booked, but (he) has moved some things around and can see you next week.” I didn’t really understand the urgency, but I happily agreed to the special treatment. I was used to doctors telling me that my symptoms were odd, but nothing to worry about.

As I waited for the appointments, I began to do some research of my own online. I started to realize that I was in for a much bigger medical experience than I had previously thought. I was suddenly thrust into two doctors appointments. One with a dermatologist, who was wonderful and helped me navigate many of the obstacles that came up in the first two years of treatment, and the other with a rheumatologist, who proved to be my first experience with a doctor who chose a treatment course without consulting my individual case or symptoms.

I will forever be grateful to (and still see regularly), my new OBGYN who, all dramatics aside, saved my life. With the progression my case has taken, I firmly believe that had he not remembered that one page in one of his textbooks, I would not have made it to today, or at the very least, I would not have made it to today in one piece. Doctors who genuinely care and take the time to work with patients are rare, and I am so blessed to know some!

Shoes

Some people will think this post is vain, selfish, or even petty. Others, who perhaps have walked down a similar road, will understand the intentions and emotions behind it.

 

In 2008, I was a college sophomore just like every other college sophomore. Any of my physical symptoms of illness could be explained by the typical college life: not enough sleep, poor eating habits, and stress. However, over the course of the next five years, my life would change drastically and rapidly.

There are a lot of sacrifices that I made in order to survive. I didn’t choose Behcet’s, nor did I make choices that caused it. But, because of this illness, I have been thrust into a world of hospitals, surgeries, injections, and symptoms. I have re-arranged my life to accommodate medications, recovery periods, and physical therapy. I have re-arranged my wardrobe to hide scars. I have re-arranged my hopes and dreams for the future to accept a more attainable reality.

But I never had to give up my shoes. My shoes that I wore were beautiful. They were the thing I treated myself to. They were arguably the most feminine thing about me. I loved heels, especially designer heels. From the time I was a pre-teen, my dad had always bought me special pairs of shoes that were “loud” and made a statement. I was able to walk, and walk well, in 4″ heels, and more conservative heels were a staple in my wardrobe.

When I had my first surgery on my leg in 2008, my aunt (who is also a physical therapist) promised me I would be able to wear my heels again. When I had the next surgery in 2010, she again promised me that I would be able to wear my heels. After the fourth surgery, I was ready to just be able to walk without a walker.

Recently, I have started having to deal with secondary symptoms, the ones that you get as a result of medications or symptoms of Behcet’s. The newest has been avascular necrosis (also known as AVN or osteonecrosis), the death of bones because of a loss of blood flow. This is probably a result of years of insufficient blood flow to my foot and leg, as well as years of Prednisone use.

Because of AVN, I’m wearing Danskos now. My job requires me to be on my feet and moving, and I have never been one to sacrifice my personal life because of Behcet’s. So, I have to wear Danskos to protect the bones from further injury or decomposition. Danskos are not pretty, and they are certainly not unique. They do not come in fashionable heels, and they do not come in styles that can easily be worn on a night out.

I am happy to do what I can to protect my foot, but my shoes were something that I very much considered part of my very personal identity. Now, I’m left to wonder what to do with them. I have a closet full of shoes that I will most likely not be able to wear again. Getting rid of them seems awful, almost like giving up, but seeing them every morning as I get dressed, reminding me of the sacrifices that I have made, may be more masochism than I can handle.

Something I never really understood…

I’ve had Behcet’s for over 10 years, but have only been diagnosed for the past three years. I’ve always wanted to be as educated as I could regarding Behcets. Growing up, I was always a healthy kid, so the whole idea of being ill has been new to me. I received a crash course in how to let others take care of me in 2010, when surgeries, blood clots, and complications landed me in the hospital, and then living with my parents (who were wonderful) for almost a year while I recovered. I’ve learned how to manage medications and refills, time my injections every 12 hours, remember weekly or biweekly immunosuppressant injections, track symptoms, and work through pain. I’ve learned how to tell people that I’m not as healthy as most 24-year olds. I’ve learned how to ration my energy throughout the day and the week so that I can accomplish the things that need to be done in everyday life.

While learning how to manage the physical manifestations of my illness, I’ve also attempted to learn how to manage the psychological implications of life with a chronic illness, and life with chronic pain. I’ve read many, many books written by people who live with chronic illness, people who have died from an illness, family members of those who have had chronic illness, and doctors to patients with chronic illnesses. Many of these books have a chapter dedicated to something along the lines of “I have an invisible illness, so no one around me can see how sick I am.” I feel as though I have begun to really process and work through many of the psychological issues that go along with Behcet’s, however, I have never really felt as though I wanted those around me to see how physically ill I may be.

I have many, many surgical scars. I had a fasciotomy in 2010 that doctors were unable to close, so the outside of my right leg is largely scar tissue. I have one scar that runs from above my right knee to below my ankle. I have chosen to always wear long pants to cover up my scars. Even when the surgical wounds were new and still healing, I did not allow many people outside of those who were caring for them to see them. I don’t view my scars as “battle wounds” that I have won, I view them as a constant reminder of where I have been. I have been hospitalized for weeks at a time. I have been in ICU. I have been in wound care clinics. I have worn a WoundVac in public. That is not the part of my life that I want to remember. I see the scars when I shower, when I change clothes, and when I go to the bathroom, and they remind me of the journey that I have been on. I choose not to allow others to view my scars, because where I have been is not the most important part of my journey – the most important part of my journey is where I am going. (To be fair, part of my decision to not show my scars also centers around not subjecting myself to constant questions and looks from those who can see them, but that is a different blog.)

I guess what I am trying to communicate is: I don’t want other people to see what is going on inside my body, because I want to be known for so much more. I don’t want other people to see that I have an illness that gives me mouth ulcers, genital ulcers, skin lesions, blood clots, aneurysms, and avascular necrosis. I want this illness to be private, and I want to be able to control what other people know. Certainly, there are days when a particularly rude comment makes me wish another person could spend a day in my shoes, but overall, I am very glad that my illness is one that can be hidden until I choose to share it.