Tag Archives: pcos

Autoimmune Disease Rant

I’m sorry, I try to be positive. I try to look for solutions instead of focusing on problems, but today I feel like just ranting a little…for one day. So, here goes…

As many readers know, I have an autoimmune condition that has not been given an official diagnosis. Currently they call it “mixed” or “undifferentiated” autoimmune disease. Basically, we are waiting for more symptoms, so that we can give it an “official” name. Lupus? Scleroderma? Who knows? “We” (doctors) are just waiting to see where else in your body this is going to pop up so we can put a label on it. After a bout with pleurisy about 2 years ago, I finally agreed to take the medication Plaquenil. Its an anti-malaria medication that is shown to decrease inflammation levels. The problem is that after the doctor tried to convince me the medication was “mild”, he then said, ”oh and you need a yearly eye exam to make sure you don’t go blind from it”. Really? So the side effect is blindness? Great. I was desperate at the time, so I took it. I have been on it for about 2 years now.

A little over a month ago, I stopped taking it.  I decided to do trial run to see if I could stay off the medication. I have been pretty good with my exercise, Paleo diet, stress management, etc so I felt like maybe I didn’t need it anymore. It takes about 6-8 weeks to get out of your system, so I have been feeling the same for the last few weeks. Until maybe the last 3-4 days. Today its my knee that is aching. Last night it was the bottom of my feet. Over the weekend it was my wrists. I am afraid that my illness is going to come back full-blown. I am afraid I am going to have to get back on my medications. Or medications that are worse than the Plaquenil.  I am afraid that this knee pain is going to go back to how it used to be where I didnt even want to stand-up to walk my patients to the door. I am afraid my lungs or kidneys will spontaneously fail. I want off the meds, but I am so afraid right now.

I went to see an alternative doctor yesterday that put me on an even sticter diet plan. No granis, no dairy, no alcohol. I already knew that that is what I needed to do. The problem is that I think 100% compliance is unrealistic. For example, I was not pefect with my diet over the weekend, I ate Mexican food on saturday and some crackers and cheese at an Oscar party on sunday. BUT, that is not even two full meals of cheating. All my other meals were Paleo meals.   I feel that is as compliant as I am going to get.  Sometimes I want some spaghetti or Mexican food. I can’t live on 100% paleo all the time, I have a real social life. I can’t constantly live in this place of deprivation, eating salads and meat only. Never enjoying a glass of wine, cheesecake, or a delicious Italian dinner. Feeling guilty over too much fruit. I desperately want to get better, but I desperately want a balance. I want to eat a good diet, be at a healthy weight, feel good about my health and my life, and enjoy foods that I like from time to time and not be so afraid. I don’t know where that balance is….

My boyfriend says, that if I really feel that way, I should get back on the medications. That way I don’t have to be 100% compliant all the time (although I probably still will eat mostly Paleo, just because its better for me) AND I won’t have any pain. I just don’t know if I want to take that risk of getting back on the meds. I also can’t live with this diet forever, always trying to be more and more compliant, and never feeling good enough.

So, thats my rant for today. I am tired of thinking about it all the time. I am tired of reading the blogs, feeling my diet doesn’t add up, feeling that my results are not good enough or dramatic enough. My body is struggling with inflammation. I don’t know definitively why. Some say diet, environmental toxins, genetics, stress. I think its all of those factors. Just a big combination of things making my body freak out and attack itself. The solution as I see it today are 2 things: take the meds that could have side effects; or follow a diet that makes me feel sad and deprived that I will never be able to be 100% compliant with.  What would you choose?