Happy Chrohniedays!

I hit up the pharmacy this afternoon for my meds. It's only been a month since my insurance company started covering my prescriptions at 100%. I still cannot believe that I can walk into the pharmacy and walk out with my script without any money changing hands. It's like a layer of stress has been lifted from my shoulders. No more claim forms. No more angry calls to the insurance company (well, as soon as I get the rest of the flex payments they owe me for 2011).

A few weeks ago, my husband got the cold everyone seems to be passing around. I was fine for a week or so, then a coworker came down with a different variation of the bug. I guess my immune system had enough and I got it too. I feel much better than I did a few days ago but it seems to be lingering. I skipped my Humira last week (do you guys do this when you get sick?) in hopes that a little immune boost would do the trick. Who knows if that helped at all. My voice fades by the end of the day and my right ear feels a little waterlogged. I should probably call the doctor but, seriously, who has the time right now?

Holiday festivities begin here Thursday with an airport run then a quick trip in to the city to see the Rock Center tree before driving to my parents' house. I purchased my last Christmas gift today and wrapped everything. I ran out of Christmas paper three quarters of the way through so my niece is getting some books wrapped in flower paper. What? There's a recession!

I'm feeling pretty calm this year. I found some good sales, got some good gifts, have all my stuff together four whole days before Christmas. I'm looking forward to a stress-free holiday week and wishing the same for all my Crohnies!

Update

I survived the developing-country-film-shoot but barely. I was great for a few days but the unfamiliar food, lack of sleep and stress got to me. I had to skip a few meals but I made it out alive. The experience was amazing and I'm so glad to have had the opportunity. I ended up doing everything but taking photos, but it is a week (and a half) that I will always remember fondly.

The shoot came two weeks after my first skipped dose of Humira. I realize now that it was stupid to miss a dose but, at the time, I was feeling great and thought I would be fine missing one little injection. It was March and I was on my third Humira refill of the year. My insurance company had still not given me back a penny for 2011. I harassed them for weeks and made absolutely no progress. Each of my calls were met by a new diversion or straight up lie. Unending frustration. I had shelled out close to $6k for the year with no proof that I would ever see any reimbursement and I could not afford to spend another $2k, so I skipped it. A few hours before my flight, the insurance check arrived in the mail. Too little, too late.

I will never know if the trip would have been Crohn's free had I taken the Humira before I left. I will never know if I would have been ok skipping a dose if I were eating and sleeping comfortably at home. I do know that I felt much better a few days after I stuck myself upon my return. Thanks again, Humira.

I took three trips in the four weeks following the shoot and I can't say I was in good health. Flying kills my stomach. I don't know why. Even a short, one hour flight is enough to put my guts in knots. An even bigger problem is sticking to my regular food routine once I arrive at my destination. It's just impossible. Hopefully one day I will figure it out but, for now, for me, traveling means suffering. It's totally worth it.

I feel great! (Well, except for a couple of things.)

Today I had my first blood test in three months. It was just a regular old checkin-up-on-the-Humira test. My nurse told me I have a completely new face which, I think, was a compliment. The 6mp bloat is gone and I have some color. I know I look better. I feel better. My life is better. I just still don't feel great.

My stomach is almost 100% better. I rarely have any trouble digesting anything I eat - even the stuff I shouldn't be eating. I do, however, still have Crohn's belly after every meal. If I swallow anything, no matter how big or small, it results in a food baby. I still have some trouble if I'm in an uncomfortable situation or if I'm nervous - BUT - compared to last year at this time, I'm a new person. So, when I call for my results on Monday, do I complain about this stuff? Should I just shut up? I can eat now! I can leave my house after I eat! I can make it to work without getting off the train and running to find the nearest facilities! Do I have the right to complain about some minor (if embarrassing) discomfort?

Then there's the pain. I do still have some minor pain when I, uh, youknow. But I have other, more disruptive pain. There's a pain at the base of my neck, on my back, where my neck meets my shoulder. It's recurring. It's horrible. It's much worse when I'm stressed out.

And my legs. They still hurt. It's more of a stiffness in the morning. They feel strained when I go up and down stairs. By the end of the day it's a different kind of pain. It's an achy, crampy, swollen type of pain that makes me just want to sit with my feet up or lie down. I've also notice many, many visible blood vessels on my legs which weren't there just a few months ago.

Then there are the headaches. I still have them. Often. And they're sometimes drug-resistant and always incredibly disruptive. And they make me so tired. Do I tell my doctor?

I've told him a million times about the headaches but he seems to think it's from the Humira so it's either headaches or Crohn's.

The body aches? He will send me straight back to the Rheumatologist who will tell me it's either Arthritis or Fibromyalgia and I can go to physical therapy. But I don't want to go to physical therapy. I can't afford physical therapy nor do I have the spare time. I want to know what's wrong with me! I want to know what my options are!

How do I voice this to my doctor in a way that doesn't make me feel like a half-crazy, whiney baby?

Suggestions? Advice?

Broken Record

Same old story: I'm battling it out with my insurance company again.

It turns out I haven't been getting any money from them because there's a glitch in the system. After I submit my claims for prescription reimbursement they get halfway through the process and the name of the prescription is removed from the claim so they reject it. I had to resubmit every claim since FEBRUARY.

I then found out that the reimbursement check for a trip to see a doctor in March was sent to the doctor. I paid in full, $570 dollars, before I left the office and the insurance company sent more money to the doctor. At this point they owe me about $4000 dollars. Do you know how many paychecks that is?

I am beyond frustrated. I do not know the words to express how I feel about this situation and the fact that I am going to have to deal with this for the foreseeable future. I could scream.

Health Care Reform

I will be honest, I haven't found the time to read the details of the health care reform bill that will likely be passed or shot down by Congress this weekend. I know generally what it's about but I also know there are a lot of rumors flying around the web. I don't know exactly how this bill will affect me but I doubt anyone really knows. I do not know if this bill is the right move or if it's a step back. This is what I know.

I have health insurance through my employer. A portion of my pay is taken from my paycheck each month and is put toward my insurance coverage. I drag my butt to work every day through all of the symptoms listed on the Pepto-Bismol commercials as well as some bonus symptoms. I pay 20%, and sometimes more, of all my medical bills in a timely manner. Yet my insurance company continues to fail me time and time again.

I spent several hours each day this week on the phone with my insurance company, the caseworker who was assigned to me by my insurance company and a new pharmacy. Each time I spoke with someone I got a different story. I was told that my medicine would be cheaper if I used a pharmacy that was in network. I was then given the number of an "in network" pharmacy by someone at the insurance company. I then called said number only to hear back from the pharmacy that my insurance company told them they were not in my network. The next person I spoke to then told me they were in my network. And on and on and on. "Call the pharmacist." "Have the pharmacist call us." "We don't deal with pharmacists." I was then informed that PHARMACEUTICAL SERVICES DOES NOT HAVE A PHONE! They can give me a fax number and an email address but they don't have a phone. I am not able to speak with someone at my insurance company's pharmaceutical services department.

I had to call the most helpful pharmacy employee on earth about a hundred times to apologize profusely for wasting his time and ask him to call another 800 number just so someone could tell him that they couldn't help him.

This week I literally WASTED at least eight hours of my life just getting a prescription filled. In the end, I paid exactly what I would have paid had I not made one single phone call. I paid the same price I would have paid had I gone to the far more convenient out-of-network pharmacy in my office building. That price? $1700.00. AND I HAVE HEALTH INSURANCE!

You cannot convince me that we do not need health care reform.

The End Is Nigh (I Hope!)

The past two months have been a challenge to my sanity. Working out a way to begin biologic treatments has become a part-time job. After wrestling with the insurance company for weeks then spending a few days on the phone with the Humira people, I have finally FINALLY picked up my starter kit.

I have tried pretty much every pill in the book in an attempt to gain control over my symptoms with minimal success. I have wasted an incredible amount of time and money because my doctor prefers the "bottom up" approach, which also makes sense to me. If a cheaper drug with fewer or less serious side effects works - it's better to find that out than to jump straight to the hardcore stuff. If I had to choose again, and I probably will someday, I would likely make the same decision. I'm lucky in that my symptoms, although present on a daily basis for over a year, were never so serious that emergency action was needed.

Much of my energy has been focused on getting access to Humira without going into debt for quite a while. I am relieved to finally have the medicine in my possession, but the relief has been overshadowed by my fear.

I am terrified. Over the past year, as each drug failed then each combination of drugs failed, I knew that there was always another option. I knew I always had biologics to fall back on and now here I am, two days away from two shots of Humira.

My fears range from the trite (I have to stick a needle into my body???!!!) to the completely absurd (someone will probably cough on me on the subway and I will be the next Swine Flu casualty). Then there are the reasonable fears:

Is my insurance company really going to reimburse me 80% of the fortune I spent at the pharmacy yesterday?

Am I going to tolerate this stuff?

Should I really be injecting something into my body that has only been on the market for seven years?

What if biologics don't work for me?

I have read through just about everything ever written about Humira. There is so much information out there and it's hard to know what's true. I guess it's out of my hands now. I'm going to stop reading now and hope for the best.

The Long Road to Humira

My doctor left choosing the biologic up to me which meant it was up to my insurance company. Brilliant. I have a long and sordid history with my insurance company and knew from the start that this wasn't going to go well.

I made the first call. The woman I spoke with put me on hold for 10 or 15 minutes. When she got back to me she told me that injectibles are not covered. Period. Sorry. I took a deep breath and got a copy of my insurance policy from HR. Then I spoke with our insurance person in the office. She made some calls and nothing happened for a couple of weeks then, suddenly, I had a case worker calling me from the insurance company.

My case worker called to let me know that she is an RN and also has Crohn's Disease and she is stuck in bed with unbearable pain if she stops her meds for five days. Why am I off my meds for five weeks? Do I have any idea what could happen to me without medication? Then she went on to describe to me what a fistula is. She told me I needed to start my medication and worry about the insurance mess later. Seriously? This woman from the insurance company called to let me know how urgent it is that I begin treatment but offered nothing in the way of expediting the process? Also, she is an RN AND she has Crohn's Disease AND she works for an insurance company but she's never heard of Humira? Really? Finally, does she think I'm new to this and she's going to trick me? I know better than to pay for medical expenses without having some sort of clearance, especially when the medical expenses are close to $6000.

So I continued to call the insurance company and case worker every other day for a few more weeks until the insurance company decided that I tried all of the other medications available and they would make a "standard of care" exception. As usual, I would pay for the medication up front and the insurance company would (should) reimburse me 80%. Research indicated that Remicade would cost me about $6000 per treatment every 8 weeks. That's about $3000 per month. At $1600 per month the Cimzia and Humira were much cheaper. I decided on Humira because it has been on the market longer.

A week later I had found a pharmacy that was "in network" and ordered my Humira Crohn's starter kit. It was $5700.00. That meant I would pay $1140 out of pocket. Thankfully, Abott has an amazing assistance program for those who may need help paying for Humira. Those with Crohn's are eligible for up to $1000 savings on a starter kit and, I believe, $350 each month after that. My doctor's office sent over a patient assistance card from Humira and I began making calls.

I want to be clear, I have had an amazing experience with the people who answer the phone when you dial 1-800-4-humira. They are sweet and understanding and as helpful as can be. They all wanted to help me but a few of them just didn't understand the situation. After several calls, I finally spoke with a woman who got it. She told me that the pharmacy should ring up the Humira at full price ($5700) then run the card - it would look on the receipt like I paid with a gift card or something. Then I would pay the remaining $4700, send the receipt in to my insurance company and they would reimburse me 80% of the full price ($5700). This meant I would end up paying only $140 dollars out-of-pocket. Completely manageable. I was feeling so much better about all of this biologic stuff.

Then It Was Depression

I was on Effexor for almost a year. Was I depressed? Probably. I think it is difficult for anyone with a very active chronic illness not to suffer emotionally. I realize there are worse things that could happen. My illness is not terminal. I have a supportive family and a boyfriend who should be canonized. I am employed and my boss is incredibly understanding. Although it's not the best, my health insurance does pay for some of my expenses. I live in a place where I have access to some of the best doctors in the world. The list goes on and on but it is difficult to count your blessings when you are sick every day.

My first year of Crohn's was the worst year of my life. It's terrifying to watch your body deteriorate before your eyes. The uncertainty of not knowing what was wrong and the fear of what could be doing this was paralyzing. I went to work every morning but went to bed as soon as I got home. There were many, many mornings when I woke up and wasn't sure if I could physically or mentally get through another day. At my worst, I really did not want to live like this any longer.

It is difficult to accomplish in a day's time what was possible before I got sick. Simple thought processes become impossible when I am always in pain. The distraction of constant discomfort is hard to overcome. It's like going to work with a hangover every day.

The constant fear that my health coverage will fail me again is almost as anxiety inducing as the disease itself. Crossing that line into the red can be devastating.

Then there's the fear of leaving my apartment. The hour-long subway ride to work can be daunting. I have had to get off the train and run up to the street several times. The oh-my-god-I'm-not-going-to-make-it feeling is enough to make me want to never leave home again.

The guilt of canceling plans over and over is also a lot to deal with. No one can really understand what it's like to be sick so often for so long unless they have been through it.

It is difficult to deal with all of these emotions at once, especially when you are sick. I've never taken part in a support group or anything like that. Maybe I should have - or I should now. I'm sure it's comforting to spend time with people who can actually relate to what you're going through. I do spend time on ccfa.org (Crohn's and Colitis Foundation of America). Reading the forums is sometimes helpful. At least I know I'm not alone.

Results

This is the report I received after my first colonoscopy in 2005.

The duodenal biopsies performed were completely normal; there was absolutely no evidence that you have or ever had giardiasis. There were no features of a malabsorptive illness such as gluten sensitive enteropathy. The biopsies were normal.

The biopsies of your colon did reveal some mild resolving inflammation consistent with acute self-limited colitis. This condition is secondary to a viral or bacterial colonic infection which is acquired by consuming contaminated food or water. It is extraordinarily common. Thirty percent of patients may develop persistent symptoms that can last as long as twelve weeks.

My advice is for you to continue to use the Pepto-Bismol chewable tablets, two by mouth, three times daily, until your symptoms completely resolve.

In the rare instance that your symptoms persist beyond twelve weeks, it would be absolutely essential that you contact me for further medical advice. In rare instances, repeat colonoscopy with biopsy is necessary to be certain that occult inflammatory bowel disease, Crohn's Disease, had not presented itself in an unusual fashion.

My clinical impression is that you will become completely well over the next several weeks to months and should have no long-term difficulties. I know this is frustrating to you if your symptoms persist, but I can not change that.

A copy of this letter with this information has been forwarded to your primary care physician, Dr. _________, along with your colonoscopy, endoscopy and pathology reports.

Reading this letter again now, it seems perfectly reasonable. I now know that it often takes years for a Crohn's diagnosis. I know that Crohn's is not always detected through a colonoscopy and my misdiagnosis was the norm. However, at the time I was frustrated, sick, broke and unhappy with my experience.

The GI doctor I saw rarely listened to what I had to say. He frequently cut me off in the middle of a sentence and even indicated at some points that I was exaggerating my symptoms. He was incredibly pompous and I should have seen someone else, but I was young, inexperienced and confused.

Also, looking back over this letter, I realize there are some red flags. For instance:

My advice is for you to continue to use the Pepto-Bismol chewable tablets, two by mouth, three times daily, until your symptoms completely resolve.

Pepto-Bismol is useless against my symptoms. It was not helping me to begin with. Had the doctor listened to me when I spoke to him, he would have known that and maybe given me some helpful advice.

In the rare instance that your symptoms persist beyond twelve weeks, it would be absolutely essential that you contact me for further medical advice.

When I received this letter, I was already into my 15th or 16th week of persistent symptoms. If it is rare for my symptoms to persist beyond 12 weeks and it is essential for me to seek further medical advice in that instance, shouldn't he have dug a little deeper? Did he want me to wait another 12 weeks?

In a perfect world I would have gotten a second opinion and possibly found out it was Crohn's four years ago. In this imperfect world, I was out of money which meant I was out of options.

If I'd only known then what I know now...

Here's Where It Gets Relevant

So it turned out that I had just talked myself into the parasite because I didn't want to have a colonoscopy (who does?). Not only were the symptoms not actually improving after the Flagyl but they were getting worse. I wasn't thin before I got sick, but at this point I had lost 40 pounds and couldn't afford to lose any more. My hair was falling out and I was having difficulty gathering the energy (physically and emotionally) to get out of bed in the morning.

I was making very little money, I had begun paying back my student loans, I had a new (used) car payment and I had spent what little I had left on my 20% cut of the doctor visits. I decided I would be better off traveling to my hometown for doctor visits. I already had a trusted doctor there and the bills were half as much. To my dismay, my old doctor also thought I needed a colonoscopy and an endoscopy. I reluctantly made an appointment with the Gastro my mother had seen for a routine colonoscopy the year before.

I made sure to research the costs that would be involved with this colonoscopy. The GI I was seeing was in my network so I got the negotiated discount and everything was covered. Fantastic. Finally I would find out what was wrong with me, the doctor would fix it and all would be well.

I took a day off work and made the three hour trip back to my parents house. I survived the prep and went in for my scopes. It went as well as a colonoscopy/endoscopy could go. I woke up, spoke briefly with the doctor and went home to eat.

As I waited (and waited) for my biopsy results, I began receiving bills from the procedure. I had expected to pay something, you know - a couple hundred dollars, so the first bill or two were fine. Then I was hit with the anesthesiologist's bill. Even though he was in the same room as the GI for the procedure, he was not in my network and he didn't come cheap. This was nothing compared to the "facilities charges" they soon sent my way. It cost me $2,000 for USE OF THE ROOM where they performed the procedure! $2,000! That was almost 10% of my yearly income! These charges were literally for occupying space inside of a building during the colonoscopy. They were charging me rent.

I obviously didn't have this kind of money lying around. This is the first time my insurance company and the American health care system let me down. I was just out of school and had no idea what I was doing. I never thought to call the insurance company and harass them until they covered something. All I could do was pay the bill.

I set up my own payment plan and sent $10 each month to the doctor. They were not amused. I soon heard from a collections agent. I could not believe that, in the midst of this health crisis, collections was after me. What does one do in this situation?

I decided to keep paying my $10 each month on the logic that they couldn't do anything as long as I was paying, right? What were they going to do, take the colonoscopy back?