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. 

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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!

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(Me with my little brother in 2010.)