And another round is done. // The importance of knowing your doctors.

I try to schedule my doctor’s appointments in batches to alleviate the stress that it puts on my job. In the past three weeks, I have had four appointments, one each with my rheumatologist, vascular surgeon, opthamologist, and neurologist. 

Each doctor ran their own set of tests, and each doctor concluded that my current set of interventions is working well, and there are no immediate concerns at this time (flare non-withstanding). 

My rheumatologist and vascular surgeon are two of my favorite people in the world. They have both changed my life. My vascular surgeon has saved my foot multiple times now, and he listens to me when I tell him things are going well, and when I tell him I’m having a problem. He is patient, and he works methodically using a data-driven approach to find interventions that work for me, and he makes sure that I understand each intervention that it chooses so that I can advocate for myself and communicate the decisions effectively to all of my other doctors.

My rheumatologist is a wonderful woman who, along with a fellow who has since moved on but was wonderful, has saved my life. She listens to me, and she takes time to explain the intricacies of Behcet’s. She also uses a methodical and data-driven approach, and works to grow my own confidence in my decision making. Many times along this path I have felt overwhelmed and like I do not know how to gauge what is a small and insignificant change in my health and what is a red flag. My rheumatologist has worked with me to create a hierarchy of symptoms that I can easily track and manage.

There are doctor’s in my network that I do not see anymore. There’s one doctor who is no longer allowed to be involved on my case. I’ve gone through my fair share of residents and fellows who asked a dumb question and have been kicked out of my exam room by their attending. One of the things that I have learned along this path is that knowing your doctors is a huge factor in the long-term efficacy of the treatment they prescribe. I whole-heartedly trust my doctors to have my best interests in their treatment plan and to plan their treatments according to my short and long-term goals. I also trust them to help me shape my goals into dreams that are attainable in my current state. I want to be hopeful but realistic. 

I am forever grateful and indebted to all of the doctors, nurses, and technicians who have worked on my case. Without them, I would be in a much different place. 

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Some days, I’m just done.

I don’t want my blog to become a place where I only whine about medical woes, but I also want it to be a very real place where I convey what living with a chronic illness looks like in a very raw way. So, here goes.

This winter has been an emotional one. I’ve accomplished many things professionally that I am very proud of and worked very hard to obtain. But I’ve also been battling more with my physical health than I am willing to admit. I attempt to do everything that I can to shield my loved ones from the repercussions of living with a chronic illness, because it only upsets them.

In the past three months, I have had the flu twice, and I’m currently experiencing a cold and a flare that I would rather not deal with. As someone who prides herself on being professional and compartmentalizing her life, I am struggling with the fact that I had to take today off work to try to get over the cold that I currently have and allow this flare to start subsiding. 

For the immediate future, I am upping my Prednisone (something that I loathe having to do) and attempting to de-stress and rest.

Cimzia #3 and iHealth Log Review

On Friday night, I took my third set of Cimzia injections. I had to do it a day earlier than my previous injections due to some family commitments going on this weekend. I again got the immediate bad taste in my mouth and itchiness that came with the initial 2 rounds of injections, and this time I felt very shakey and jittery for about 24 hours after the injection. Otherwise, I feel like I have done very well. I spent Saturday doing some spring cleaning at my house and preparing for my dad’s birthday celebration the next day. Today, I have spent time with my family and focused on my lengthy to-do list for work. I did my research before starting Cimzia, so I am familiar with the possible side effects, as well as the “internet side effects” that many people talk about on the Cimzia message boards. I feel very grateful to have not yet experienced any major issues with the Cimzia injections, and I am still very hopeful that they are working. I had two small skin lesions this week, but I also had arguably the most stressful week that I have had in months, so they could easily be attributed to a stress-induced flare.

I recently got an iPhone (I’ve been a Blackberry woman for four years, but was unsure that the company would be around for the next two years before my next upgrade). I have a Mac, iPod touch, and iPad, so I am familiar with many apps. However, I was looking through the app store for something that would help me keep track of my current medications and symptoms. I have considered in the past just tracking these things on the calendar in my phone, but it can be difficult to determine which notes are directly related to my health and which are other unrelated appointments. 

I found the app iHealth Log (a free download!) and gave it a try. This app allows you to record all of your medications, as well as weight and other measurements. It also has a “diary” where you can create an entry when a medication is taken or a symptom appears. Most importantly, it has an “In Case of Emergency” section where you can record critical medical information as well as an emergency contact and the medications to which you are allergic. 

I always find it difficult to remember exact dates or symptom durations when I’m in the middle of a doctor’s appointment, and I always strive to be as informed and data-driven in my decisions as possible. I love that this app allows you to record anecdotal information in a “diary” format, then easily access each entry to refresh your memory or supply you with specific details. I would love to see this app expand to keep track of more specific lab work results or compile doctor’s appointments; I would also love to be able to export the information that I log to other file formats. Overall, though, I’m impressed with the user-friendly interface and stream-lined approach to what can be a very complicated data system. 

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.)