I will preface this entry by saying that, much like my blog posts over the last year, it has taken me months to finish this one. And each time I start up again, I first have to work on editing the post to make it time-relevant. Such is the life of a toddler mom! Even though I'm well past some of these thoughts now, I'd still like to share...
Those of you who are friends with me on Facebook have seen my aggravated posts about the doctor visits I've dealt with over the years. For instance - the latest and not-so-greatest pain specialist in my life.
The first time I saw Dr. V. last November, he agreed that having to schedule an appointment every month, just to refill my pain medications like the last guy required, was bogus. He said that I was a "low risk" patient and that he'd only need to see me every three months. I've lost track of how many times I've been up there since that day 4 months ago, but it's close to 10. At my latest visit, I finally got him to agree to the once every three month deal (only after he tried pawning me off to a local pain specialist who, of course, I've seen and had an even worse experience with).
In December, the same doctor performed a round of diagnostic injections on my back. I found out AFTER the fact (and $1,000 later) that I'd have to do one more diagnostic round before getting a chance at the "real thing" to treat my pain. It wasn't until three weeks after my follow up visit that I realized I wasn't getting a phone call from scheduling. It turns out the doctor "forgot" to put in the order?!
I'll give you one guess as to what I needed to do to rectify that? Yes indeed - I had to schedule yet another "routine" doctor visit! So I took even more time off of work, and drove through super annoying traffic to see his ARNP, who assured me that this time the order was placed. At this point I'm starting to get all those deja-vu feels, because that was well over a month ago. Either my phone is broken or someone isn't doing their job! Oddly enough, I just happened to have another one of my "medication refill" visits a week ago, where one of the first things Dr. V. said when he entered the office was, "Weren't we going to do another block in your spine?" As if he's waiting on ME to make that happen. Such a joke!
This got me thinking of all the bullshit that I've dealt with over the years. I think it's important for people to understand that for those of us with a chronic illness like Lyme, it's not just that we have to see hundreds of doctors - it's that we literally have to deal with total BS all the damn time. There is a lot that plays into this medical malarkey, and I honestly don't know which is the most maddening...the abundance of phone calls with insurance and scheduling, the wasted hours spent traveling and sitting in waiting rooms, or the thousands of dollars that we are forced to throw down the drain every year (a $4,000 cheek swab here, a $900 urine sample there...). But what could be worse than wasted time and money, you say? How about having to tell your story over and over again - to many who don't even pretend to care. How about feeling like a number, a demoralizing notch on the ole' patient belt?
I'm sure many of us could write a book with all the stories we have to tell. Unfortunately, my Lyme brain can't remember a lot of them. But here's a little taste of what I've had to deal with on an all-too-often basis:
If you're just tuning in to my story - what set off my symptoms 10 years ago was having my gallbladder removed. In those early days, I had debilitating digestive issues. My stomach was so distended, I went up 4 pants sizes in less than a month. I was often doubled over in pain, to the point that I nearly went to the ER on many occasions. TMI here, but for years I would go three weeks or more without having a bowel movement.
Naturally, with my oblivion to the Lyme disease within, I blamed everything that was happening to me on that surgery. Still, I didn't understand why, and neither did the large list of doctors I sought out. In fact, they would take complete stabs in the dark as to what was ailing me.
It didn't take long for me to realize how many doctors there are that wouldn't even begin to think outside the box. Real life is definitely not like an episode of "House." I recall one of the first docs just guessing that I had appendicitis. Thankfully I didn't let him remove any organs. I certainly learned a lesson from my cholecystectomy - there really is no such thing as an "organ you don't need!"
In the very beginning, I saw a Gastroenterologist who ordered the first of many tests to come - an endoscopy, colonoscopy, ultra sound, electrogastrogram, sitz marker study, a gastric emptying scan...nearly everything turned out completely normal. He did, however, diagnosis me with gastroparesis - a motility issue of the stomach. Yet Dr. D. had no explanation as to why I, at only 26 years of age, had a condition that is most commonly found in the elderly. So although he did try to figure me out, he also entirely gave up when he couldn't succeed. You know what he told me in the end? That I must be taking in too much air. His final words to me were that I should "slow down when eating" and to "stop CHEWING GUM." Clearly, that was my cue to move on.
After it was apparent that the Western Med world was failing me, I ventured over to the naturopathic side. While I've generally had MUCH better luck with this kind of medicine, I've also dealt with some doozies there. The first ND I saw had me on a very intense and expensive regimen that I followed to a T. Along with that, I was also sticking to my healthy diet and exercise routine, where at the time I was working out 2 or 3 times a day, 6 days a week. The kicker to all this life-going-to-shambles thing is that I had been at the "healthiest" of my life when my gallbladder was removed. Well, after I wasn't getting better with this doctor (and my stomach continued to remain pregnant-looking), he determined that I wasn't being truthful about my diet and exercise. He basically told me to lay off the cheeseburgers. And I told him, "sayonara." (Ok, I may have also sent him a nice little letter telling him how I really felt...)
Later, I found a doctor who I had heard the most wonderful things about - someone who actually cared for his patients rather than just practicing "patient care". My parents came with me to the appointment - for moral support, and also to help convey the seriousness of what I had endured thus far. The guy was awesome. He told me he was going to do whatever it took to figure out what was going on with me. For the first time, I felt ecstatic after leaving the doctor's office. I felt hope!
And then I went in for my second appointment - this time on my own. I felt like I was meeting an entirely different doctor. He asked all these monotonous questions - things we had already discussed - and seemed so far removed from the first meeting. Instead of the compassion and eagerness to solve my problem that I had seen previously, I left the office feeling the same as with every other doctor - that he just wanted to blame my symptoms on something as simple as stress or IBS - instead of really trying to solve my case. Sadly, I later discovered that just one week after that appointment, Dr. H ended his life. This helped me to remember that doctors are just people too. However, I also realized at that time that physicians like him were few and far between. I remember feeling guilty because although I was heartbroken for him and his family, I was also very sad for myself - that I had come so close to getting help, but had to watch it slip right out of my fingers.
Since my diagnosis, I can't even count how many doctors have pushed me away as soon as they learn that I have the "L" word. It's gotten to the point that, unless transparency is absolutely pertinent, I've made sure to keep my disease hidden. I've had physicians blame my symptoms on Lyme, even before they've had a chance to look at my records or conduct any of their own testing.
A lot of the more recent stories, you can read about in my other posts. Like the unprofessional doctor who was too busy telling me stories about how he walked in his house to "find his wife f*&%#$@ some other man" (his actual words sans censor) rather than focusing on trying to help me.
There have been countless others who have added such negativity to my story. Doctors who have flat out told me that Lyme disease doesn't even exist in Washington state. People who have made me feel like I was bat-shit crazy - that my symptoms were all in my head. Physicians who made it very clear that they were more intent on making a quick buck, and shoveling me in and out of their office as quickly as possible, than spending the time to help me find an answer.
However, although this kind of service makes up the majority of my medical experiences, I would be remiss not to mention some of the people who have left a positive impact on me, and helped me get me where I am today.
For starters - I think of the random way that I stumbled upon my Lyme diagnosis. If you take out all the yayhoos I wasted my time on, it really only took 4 individuals to get me there. It started with my wonderful chiropractor in Spokane (who's help with my back I miss so much now!) - Dr. Ray Sicilia. In the midst of my digestive hell, he recommended I go to Body Detox Center for colonics - where Heidi, the owner, came to be such a blessing in my life! She suggested I see Dr. Birnbach at Designed Clinical Nutrition in Redmond, WA. For years, I drove there monthly from Spokane. Her in-tune nutritional muscle testing got me back on my feet again. Dr. B. did wonders for my stomach (and other) issues, and was also the first doctor to recognize that I might have Lyme. We worked on ruling all other things out first - as she recognized the difficult and expensive road I would need to go down if I ended up having Lyme - and we both hoped to God that wasn't the case. Needless to say, she ended up having to refer me to Dr. Ross in Seattle who finally diagnosed me with chronic Lyme Disease in 2014.
I've easily seen over 100 doctors in the last 10 years. Yet I can only count 7 who actually made me feel like a human being; who made it clear that they cared, and wanted to help me get better. SEVEN. Out of hundreds!
Not long ago, I made mention to my coworkers how much I have changed as a person through all of this. A lot of it has to do with the hand I've been dealt - the physical, emotional, and mental turmoil my lack of health has created. But a large part of it also has to do with the medical system, and how many people have failed me. Hundreds of appointments that end in either disappointment, frustration, hopelessness, or all of the above.
I used to be shy, timid, kind. Now I'm mostly angry, abrasive, and at times - aggressive. Too many years of fighting. Fighting for my health. Fighting when someone tells me that there is nothing wrong with me. Fighting to get answers. Fighting for anyone to take me seriously. Fighting to get through it ALL, even when I just feel like giving up.
The thought that I hang on to is that there HAS to be more than 7 people. Because even if I have to meet 50 more bad doctors to meet 1 more good
one - if that one good one is the person who will be the one to finally figure me out, it will all be worth it. **
**This was the original ending to my post. However, as crazy as it seems...I've just recently found a doctor who I believe is not only one of the good ones, but perhaps THE best one I've ever met. I've had two visits in person and several on the phone so far, and I'm convinced he is the one that is finally going to get me where I need to be, so that I can live my life again. It's still going to be a long, difficult road, and I'm really not sure how we will be able to afford it, but it feels so good to finally have some hope again! I will post more about my first visits with him soon(ish).
And for anyone out there reading this who is like me - who has dealt with the same BS I have over the years - please keep holding on to hope. There ARE good doctors out there. And how I found out about this one? Some of my wonderful family members attended a Lyme Walk in the Tri-Cities last May to support me - and although I couldn't be there - they met a lovely lady named Tavia, who organized and hosted the whole thing. Her and I got in touch with one another, and she strongly encouraged me to see her doctor at Holistic Healing Arts in Edmonds, WA. I'm so very thankful for these seemingly random instances in life that are actually quite meant to be!
