Friday, June 17, 2011

It's a Question of Trust!

Merriam Webster defines trust as:

1trust noun \ˈtrəst\
1a : assured reliance on the character, ability, strength, or truth of someone or something
b : one in which confidence is placed
2a : dependence on something future or contingent : hope

The truth of the matter (to me) is can I trust anymore? When I was first diagnosed with ra, I trusted almost everyone and everything. I believed in the character, ability, strength and truth of doctors, pharmacists, the FDA, employers, family and friends.

Unfortunately twelve years later, many medical mishaps, recalls of countless medicines by our FDA, broken promises by friends, lack of understanding by employers and family (at times) have nibbled away at the very foundation of my ability to trust anymore.

Will I give up in this battle?  Absolutely not!  But I now know that I must first rely on myself. I must first rely on my God given abilities to track down the best doctors for me personally, track down all the facts about ANYthing I put into, around or on my body, continually strive to say no to those that demand more then my ra body can give or do, and foster friendships that build me up rather then tear me down.

This process has been a very hurtful process at times. And, one that I really never ever expected I would have to experience.  And it didn't happen just suddenly like one of those summer thunderstorms that come on quickly and furiously. And nor do I believe it will vanish as quickly.

The first wrinkle in my script happened shortly after I was diagnosed with ra.  I was given three prescriptions at the time, one including sulfasalazine. Dutifully I dropped off my prescriptions and picked them up. I wanted to get started on my treatment asap…I was in a lot of pain and needed to continue working. Upon arriving home, I opened the pharmacy bag and lined up my prescription bottles on the counter.  Attached to each receipt was the detailed information pertaining to each drug. I sighed heavily, weighing whether I should bother to read any of it. I mean, my doctor did write these prescriptions and a pharmacist filled them. They were the experts, not me!

I am not really sure what made me stop and decide that I had better read them. I mean, this is my body and even though I was so physically exhausted, I needed to understand these medications. I read. On the second prescription which was for the sulfasalazine it clearly stated in bold writing that anyone with a sulfur allergy should not take this prescription.

I was dumbfounded. I know for a fact I had written on my medical records at the rheumatologist that I am highly allergic to any sulfur based medication. I had even (in the past) had the pharmacist make notes in their computer system about my severe sulfur allergy. I was flabbergasted that two professionals had just possibly handed me something that could have potentially killed me if I had not taken the time to read the inserts. A huge sludge hammer hit my armor of trust, taking a big chunk away with it.

One year later, 2,000 miles away I was having difficulty swallowing and I was in a lot of pain.  I tried every doctor that I could think of: endocrinologist, ear/nose/throat specialist, and my gp. I even wound up in the er at one of the top rated teaching hospitals in the northeast. Their diagnoses was a sore throat. Others had said it was ra in my larynx and allergies. I suffered for over two years with this increasingly painful problem until one day my rheumatologist said she felt an enlarged thyroid and wanted to send me for a uptake and scan. She knew of my difficulties with this constant problem. 

After two large thyroid nodules showed up, I again went back to the endocrinologist. His suggestion was that we monitor the situation. The needle biopsies had shown no thyroid cancer and all the tests indicated Hashimottos thyroiditis. I was by this time in excruciating pain. I had also lost over twenty pounds in less then a month as I was unable to eat anything with this pain.

Finally, I decided to find a surgeon in NJ that would work with me given all this information. True, no cancer had showed up even though they had tested for it but I was in pain. A whole lot of pain that was intolerable and untreatable at this point. He was in the Best Doctors Listing and I researched the heck out of how to find a good surgeon. Bless the thyroid board and their ra board over at  Those groups walked me through it all and without their support, I don't know if I would have made it through.

He agreed to remove the thyroid..well almost all of it. He even had it tested during surgery for cancer. It came back negative. They automatically send the thyroid off for further testing after surgery.

It came back cancerous. And not just one cancer but two types of cancers. Should I say Murphy's Law now? That sledge hammer once again came chunking away at my trust. Another big piece went flying. 

I was so grateful to get that thyroid out. And can I tell you…the pain disappeared immediately. I swallowed without fear. I swallowed my favorite foods once again. I was so thankful to this surgeon and to this day I credit him with saving my life. He listened. He cared. He did his job.

Unfortunately for me I have developed an intolerance to medications.  I seem to be allergic to just about everything out there that treats ra including the pain medications. It got so bad that I was carrying around an epi-pen in case of an anaphylactic reaction. And a lot of this intolerance to medications also made me intolerant to the medical community at large. Why? Trust!

I can't tell you the hundreds of times I was told that my side effects would disappear, that my inability to hold food down would subside, that my swollen lips were from food allergies, and on and on. Yet, my rheumatologist agreed I should carry the epi-pen.  She was both a rheumatologist and allergist and had tested me on all the medications. The proof was in the pudding…so to say.  She had witnessed first hand my allergy issues. In her I had trust but it took me five tries with different rheumatologists to find her.

I have come to the conclusion that overall this particular group of doctors feel that their only job is to medicate and medicate heavily and early on in the hopes of heading off joint damage. I don't disagree with them. But, I do disagree with their lack of monitoring side effects of many of these medications. I do disagree with our FDA that they are not more carefully testing these medications and coming up with a better reporting system. And I am disappointed that they do not offer a better support system for their patients and a better way to measure their success with treatment plans and the treatment of pain for ra. And I am disappointed to note that not much has changed in the way of a doctor's visit in the past twelve years. Yes, there are new medications out there but the overall exam, feedback asked (if any), and tests given for ra have changed little. We are talking twelve years here!

I want teams for ra patients. Not stand alone doctors each operating in their hemisphere, leaving the patient to travel between them. I want a better way for patients to express their symptoms, pain levels and whether THEY feel these drugs are improving their lives. I just want better treatment for new ra patients that encompass more then writing prescriptions.

Don't get more wrong, for many these medications work great. And for them I say…hats off!! I couldn't be more happy for them. But we are not all the same. We each have our own bodies, our own tolerance for pain, our own ra symptoms and our own reactions to these medications and ra.

Yes, my trust has been broken. And it didn't just happen suddenly.  It has taken many doctors, many mishaps and many life threatening situations to bring me to this juncture. But a juncture it is.

My hope is in that summer thunderstorm. Yes, it can come on quickly and furiously but after its tulmulturious passing, their is a fresh clean earth revealed.  It is in this new rebirth that I take hope. I will find my way to trust again. It may not be fast and furious, it may take me years again to trust without constant doubting. But I know from this rebirth I have become a better and stronger woman, mother, wife, sister, friend, and patient. And from this I have become a survivor.

The seed has been planted. I will water, I will care for it and watch it slowly begin to grow.

How to possibly avoid the Trust Thunderstorm:
* First and foremost…find the best doctor for you. Find a doctor that you believe is listening to you, treating you with respect, answering your questions, taking the time to treat you, available when you need them (including weekends and evenings) and works with you both physically and emotionally. Ra is more then just a physical disease. It also eats away at us emotionally and this needs to be addressed as well.
*Read all your medication inserts and understand what, why, how and when you should take your medications. Get to know your pharmacist like he/she is your most favorite relative.
* When picking up prescriptions, look at the pills themselves. Be sure what your were prescribed is what you are picking up. Pills can look very similar in color, shape, and size. Be sure you are getting the right pills.
* Read, read, read, and read more about ra.  Become your own expert on it. I am not suggesting you second guess your doctor but assuming (boy I hate that word) you trust your doctor, you should feel comfortable enough to ask any question and get an answer. Knowledge is key in everything in life. Particularly when it comes to your health.
* Go with your gut. It just may save your life. If you feel there is still something wrong and your doctor(s) has not addressed it, seek out another opinion and keep seeking another and another until you get an answer. Ignorance is not bliss in this case. You need answers and a good doctor will believe in you and help you track down what may be going on.
* Find support for yourself. If your immediate friends, family and doctors are not giving you the support you need....try online support groups. Know that you are not alone in this battle with ra...there are over a million of us out there and that is just in the USA alone!
* Don't be afraid to ask for a referral to a psychiatrist or psychologist. Ra can be a hard disease to cope with and getting help with that emotionally roller coaster will only help you.