Ups, Downs and Cost of Recovery

So I am learning that getting a diagnosis is only half the battle. As you remember 6 weeks of being sick without a diagnosis - after an emergency room visit for dehydration - a diagnosis of Giardia was discovered.

I started a 14 day course of treatment - however everyday I got sicker and sicker and sicker. More violent symptoms of throwing up and diarrhea. The day finally arrived where i was going to the specialist I had been trying for weeks to get into. That actually turned out to be a little disappointing.

He thoroughly read my chart, looked over all the tests I had performed, looked me over. But he failed to listen to me. I kept telling him I could not eat literally. It had been weeks since I had more than 1/4 of a banana ALL DAY.
I was getting thinner and sicker by the day. I would feel good until I put food in my system and then it was torture. I was so tired.

At this point he was getting annoyed with me and said call me in two weeks when you finish the antibiotics and we will reevaluate our plan. I was in shock I thought I will be dead by then or definitely back in the emergency room for dehydration. (doesn't seem like the best approach to me). He hands me a bunch of prescriptions, gives me some verbal instructions and walks out. I felt like i was hit by a bus. I walk out of the office and ask the nurse if she can help me organize what just happened in the office. To make a very long story short and not go into the details of my melt down - she wasn't much help.

Which is my next point ALWAYS TAKE AN ADVOCATE WITH YOU. I had my Mom with me and that is when she took over. I stormed out crying because I wasn't being helped, I was starving, I didn't feel good and they just dismissed me and didn't show any compassion. My mom at that point chased me down the hallway and got me to stop and tell her what I needed. I gave her a list of questions and she went back in to the battle field to fight for answers. When she went back in and asked to see the Dr. they politely told her he was with patients. They didn't expect what came next. My Mom very nicely but firmly said "No problem, I have all day. I will be sitting right there - where you can see me. I am not leaving until I see him". They didn't know what to do with her so they invited her to the back office area and went and got the Doctor.

He came out and answered all her questions for me. However, still had no answers regarding the food issue and still seemed to think going to the Emergency room was a fine option.

In the meantime, I am sitting on the floor in the hallway by the elevator crying and calling my sister in law who is a trauma nurse for some answers. Here is the great news - her brother is a Doctor who specializes in infectious disease. She calls him and runs threw this entire six week saga with him. He gets to work to help me. Later that night he calls and tells me 40% of people with the parasite I have - become temporarily LACTOSE INTOLERANT.

What have I been eating - mashed potatoes, oatmeal with milk, yogurt, pudding, and milkshakes. Holy cow I was literally eating all the wrong foods. I took all dairy out of my diet and guess what? I can eat, I keep food down and I am feeling much better.

Had the doctor taken five more minutes to ask what I was eating and given me this information I would have avoided alot of misery. 40% of the population is a huge number - that is where I get frustrated with our health care training and system. We need more doctor's like House (maybe alittler nicer than him) who - will take a step back and not just look at the data but talk to the patient.

I keep chronicling this experience because there are so many lessons in it. I haven't even gone into the rash around my eyes yet - because that seems to have everyone stumped.....

• Stand up for yourself - and always take an advocate to the Dr. with you. It is your life and no one cares about it as much as you do.

• With our current health care system it has taken me weeks to get in to see a Dr. and I am one of the fortunate ones who have very good health care coverage.

• Even after a diagnosis I did not get all the information I needed and continued to get sicker. Dehydration can kill you - not to mention the amount of lost time from work.

• I have spent out of my own pocket thus far - over $500 on co-pays and prescriptions, and my total bill is over $10,000.

• A simple parasite can literally put you in financial ruins.

• Having disability insurance, savings, and low debt has saved me from a pending disaster.

Stay healthy and stay tuned.........

Stephenie