Monday, December 15, 2014

An open letter to my doctor

Dear Doctor S_____,

I imagine it is probably not every day that you receive a letter of this kind from one of your patients. I know that your time is precious, and that you have too little of it to accomplish all that is demanded day in and day out. And so for taking the time to read this letter ... I want to thank you. 

The other day, when I came in with hip pain, you mentioned bursitis. When I asked what you thought caused the inflammation, and you said it could be anything ... Even carrying the baby on that side... Apparently I looked disappointed. 

May I take a moment to explain in writing what I couldn't in person that day? 

It was not your diagnosis that I was disappointed in. I don't think it's bone cancer or arthritis or any number of more serious complications. 

But what you see as a diagnosis, I see as  a symptom. Unexplained inflammation in my body points to me to something that is wrong. 

If it were just the inflammation, I could let it go. 

But a feeling that  something else bigger is going on in my body started back when I had my first daughter. 

As you may remember, I developed preeclampsia. While that is fairly common, I also developed HELLP syndrome ... A more serious complication. My body's development of HELLP was much like an autoimmune response ... My body attacked itself because of the pregnancy. 

When my body effectively attempted to kill both me and my daughter in child birth ... I learned to distrust my body. 

When I experienced what I believed to be an early, undocumented miscarriage a year later ... I learned to distrust my body. 

When my reproductive organs somehow failed (for who knows what reason) and the next baby implanted in my tubes instead of my uterus... And when that tube chose to rupture causing potentially life-threatening internal bleeding ... I learned to distrust my body. 

When I attempted to conceive month after month, charting and checking my temperature, and paying very close attention to every sign of fertility, and yet struggled to conceive ... I learned to distrust my body. 

When my body did conceive, 3 more times in fact, and failed to produce even a sac ... Even when the pregnancy lasted up to 8 weeks ... I learned to distrust my body. 

When I have to flush all the clots down the toilet as I miscarry ... Wondering where my baby was on all of that ... I learned to distrust my body.   

When others around me could accomplish so easily what I have yet to accomplish -- a pregnancy that does not attempt to kill my body or my baby's... I learned to distrust my body. 

When the Preeclampsia Foundation sends me newsletters saying that my preeclampsia and HELLP put me at a higher risk of heart disease ... And then my heart has tons of palpitations ... I learn to distrust my body. 

Maybe through this time so even learned to hate it a little bit. 

You know I am a high-maintenance patient. I hate that I am, but I am. But maybe you might like to know why. 

When I go to the doctor's as a kid for bowel issues, and undergo painful, embarrassing test after test ... But receive no diagnosis ... I learned to distrust doctors. (In fact, I still deal with the same issues every day and anticipate that I will for the rest of my life. For me, it is just "one of those things with my body" learn to live with. Like the chest pains. And the heart palpitations. And until just recently, the shaky hand.)

When I go in very sick and the doctor tells me, "Your throat isn't that bad at all. I'm not sure what you are complaining about. I'll give you a shot in the butt if you want, but it won't do anything." And later find out I had mono ...  Then I learned to distrust doctors. 

When I go to L&D in the worst pain of my life. Throwing up every few minutes, complaining of stomach pain so intense that I want to die just to be rid of the pain ... And never once see the doctor. When the nurse insists I am only dehydrated (who isn't at 6 am when you've been asleep all night?!), gives me an IV, then sends me home. When my doula dismisses my pain (assuming of course that it is normal contractions I'm complaining of), and tells me that "this is nothing ... Just wait until real labor starts!" .... Then I learned to distrust medical professionals.

And then when my blood tests positive for rheumatoid arthritis, and I'm referred out to a rheumatologist, I have high hopes for some sort of answer. Why did I miscarry last? Why did I get HELLP? What does a positive RA test mean? When he barely spends 10 minutes (if that) in the room with me. When he constantly glances at his watch. When he is unfamiliar with HELLP, and informs me that my ectopic was a fluke (true), and that the following miscarriage doesn't indicate a problem. When he tells me I'm barely positive for RA, and just looks at me like "Why are you even here?" And practically runs from the room ... Then I learned to distrust doctors. 

Add to all my distrust a history of anxiety ... And well, there's a high-maintenance patient for you. 

As I mentioned, I absolutely hate going to the doctors. I always screen everything by my dad first, since he is a safe person who knows me, knows my history, and is a practicing PA. I only ever go to the doctor after I've been dealing with stuff for weeks. And both my parents insist I go. 

So know you know why when I complain of my hands and feet tingling and going numb, there is some anxiety around that. (By the way, that has gotten so much better!) 

Now you know why when I complain of heart palpitations, I expected my history of pre-e and HELLP to be factored into the equation. And that there was some anxiety around that for me. 

Now you know why I fear that you won't take my symptoms seriously. I fear that I don't have a voice when it comes to my medical care. You know now why I always want to know why ... Why the inflammation? Why the vitamin deficiency? Why the palpitations? Are they linked? Are they simply symptoms of a bigger issue ( maybe autoimmune?) 

It is simply that I am looking for a partner in the medical field ... Someone so very much smarter than me who is willing to try to figure out why all the issues. 


  1. I see so many parallels to your life. Pre-e, HELLP, autoimmune issues (mine being Crohn's disease). I understand that distrust because all those years of dealing with pain, and issues, and not having answers is enough to drive a person crazy. When you experience pain every day, you get pretty good at identifying that something isn't right, yet doctors don't want you to self diagnoze, right?

    Yeah Cat, you are having a Crohn's flare-up says the ER doc. No, I say - it's my gallbladder. I don't know this pain and it runs in my family...5 days later, oh hey, your gallbladder is septic. Great....

    I have great doctors now. But I too am a high maintenance patience. I too panic and feel pain more intensely, perhaps because I spend so much energy numbing the usual pain I feel? Who knows.

    All this to day, you are not alone. :)

  2. I know this feeling of distrust all too well. In my quest to find something to help with endo pain, I've met the doctors who are so egotistical they refuse to listen, the ones who discount my symptoms (surprisingly, not always just the male ones), and the ones who blame me for not feeling better on their timetable. It's so hard to know who to trust and when a particular path needs more time or is another dud. I hope we both find relief in some form soon.

  3. THIS is why I'm starting my NP program. There HAS to be better care. Our system HAS to change. Am I idealistic? You bet. I'm sorry for your fears, your history, and your shitty care. Ugh!!!