I realized just how weak I was when my symptoms showed on a place I couldn’t hide… My lips. I have been diagnosed with eczema for a while now and I have found creative ways of hiding it from the world, and more importantly “those girls” when I was in high school. Just recently, however, the eczema moved to my face and the world began to fall apart.  

I had been dealing with a long list of internal undiagnosed problems along with symptoms that would make anyone cringe, but I was always able to hold down the fort with one sentence: “If I am beautiful on the outside, no one can tell how broken I am on the inside”.  What a terrible though to push through my head every morning at the age of 19, but it worked. I was confident calm and a pretty face to look at, even though 20 min earlier I was throwing up blood.

When the eczema could no longer be covered with my tricks of the trade I had a meltdown. My boyfriend held me as I blurted out “now I’m as ugly on the outside as I am on the inside”. He was shocked. He knew what I was going through on an outward level, but failed to realize the extensive damage it had done to my confidence. All he could do was hold me and listen to the sounds of me weep, until I was ready to get up and face myself again in the mirror. 

I had cracked, all of those years hiding everything came out in one sudden moment and it took everything away from me. About a week has passed from that moment and I am on medication to help my lips heal, but at what cost? When I am done, I will put an X on the bottle and throw it into the box full of empty medications. As I close the lid to that box, I will once again push all of my symptoms back into the depth of my body and out of the eyes of the public.

Looking in the mirror, every morning and telling myself, “If I am beautiful on the outside, no one can tell how broken I am on the inside”.  

I have been on over 35 prescription medications since I was 13.

I am now 19, almost 20, and the list seems to just keep growing. Between My eczema, DH, allergies, and now my un-responsive celiac, I have been a mess of a teenager; but seemed to have grown quickly into an adult. A lot parents are quick to take their children to the doctor, pop pills in their mouth, rub creams on their asses, and expect a result; but that is not how it works. Both my mother and I learned the hard way that standing up agents your doctor is the best way to get the results you want.

Now I’m not saying to march into your doctor’s office cussing and making a seen (though I have done that once….. or twice), but to ask the question you want to know. Too many people walk out of their doctor’s office not understanding a world that was said. Not understanding what they are taking or the side effects, and unable to do any research themselves on the effects this might have.

So where is my rant taking this conversation?

Well, sometimes it’s ok to tell your doctor no; maybe suggest your own solution. Numerous times I have walked into my doctor’s office with a better solution than the doctor had. It’s hard to imagine sometimes, but some doctors think they know EVERYTHING about you, about your body, and how to heal you. You know your body better than anyone else. Fight for that right.

I had a very bad reaction to prednisone about 3 years ago, and my doctor at the time told me that I was lying because he had never heard of these side effects. He said that it must have been cause by something else. Really? Yes, because peeing my paints in my seat, at school is totally something a teenager goes through. It must be “just a phase”.  The bull s$#& that patients have to go through when they don’t have the right doctor is just plain painful.

As a patient, don’t expect your doctor to know and do everything they can to help you. Do your research! I could never emphasize that enough. Don’t become the stigma of medication, the “pill popper” that solves all of their problems through every single medication they are prescribed. Become your own person, and do not let your medication define who you are. 

The doctor i really wanted to see.... Dr. Crowe at the UCSD celiac clinic. This wonderful place seemed to be the solution to all my gastrointestinal needs. The only problem i faced, my insurance.

The battle began with my authorization, who was sent by my primary doctor because i didn't trust the GI doctor to even do it right. Of course as i suspected it got denied. I then call the insurance in a sudden moment of fire, anger, and GI symptoms, demanding to know why they had denied my case. They claimed it was "Not  medically necessary". Feeling undeterred i sent in an appeal to prove them wrong, sending in my abnormal blood work, but to no prevail. The next day i got a call saying that it was still ruled "Not medically necessary" because i had other doctors in my group that could handle my case. Unsatisfied with my defeat i sent in a complaint to the CA GOV, who makes sure insurance are doing their job, and opened a case file. 30 days they told me, 30 days till i  could have an answer. An answer, the man on the phone said, that would possible be no.

Finally feeling defeated by the money loving insurance, and more ill then i could stand i transferred to the highest recommended doctor in the group for patient with celiac.

To my surprise and delight my new GI doctors, Dr. Kim not only use to work at the UCSD celiac clinic, but is in close relations with Dr. Crowe. Dr. Kim was immediately intrigued by my test results and about my cluttered family history of autoimmune diseases. My case is so puzzling and abnormal that she is going to share the case with the doctors at the clinic to make sure i get the best treatment possible.

I'm still a bit sad that i couldn't go and see the doctor i wanted, but in the end Dr. Kim looks to be the doctor to solve my case. A cause that from my visits with her could be more than anyone ever expected. 

 To catch up on what has happened:

About 8 months ago i started to feel very ill with the normal GI symptoms, knowing i had celiac i relooked at my diet, only eating simplistic gluten free meals. When that did not help i began to worry and consulted a doctor for advice. He took my blood, and saw nothing unusual in my levels, sending me home feeling ill and disappointed. As the weeks passed my health declined and my skin started to peel off my body in sheets. The skin around my lips became scaly to the point where they would crack and bleed if i smiled, and my legs became riddled with DH. Something was wrong.

 I them transferred to another doctor who redid my blood test and was shocked by what she found.  My levels were extremely high for being on a gluten free diet. These being the numbers they normally diagnose patients with she sent me home to write out a food log, and sent in an authorization to get an MRI done.  

But before i left her office we had a talk about what this could be. She mentioned that it could just be wheat in my diet, but me having this disease for 4 years, she felt it was highly unlikely. My GI doctor mentioned it could be cancer in my intestines, but the MRI would give us a yes or no answer to that question. The most curious thing she said was that i could be a part of an extremely rare group of people with celiac. This group of people have one very complicated problem..... Our bodies never stop producing antibodies to fight the gluten that is not even there, therefore cause mass destruction throughout our bodies. Shocked by this i though about my sister who has had Chron's for 7 years now, and all the pain she has gone through... Is that my future as well? My doctor went through loads of information on immune suppressors, and the benefits it would have on my body, if it worked. How strong the drug would have to be, and names of prescriptions for me to become informed.

Hearing this was a shock. Wasn't this disease suppose to be easy?..... You stop eating gluten and feel better. None of this was making since.

All that was going through my head when i left the hospital was; You're prescribing me what?!?!