So far this year, nearly every weekday night has been booked with either work meetings or doctor appointments. I reached my medical deductible two weeks into the new year if that tells you anything! And I’m starting to have major deja vu. Back to the horrible first few years that my symptoms began, back in 2008 & 2009. Not only was I sick a LOT, but I was going to doctors all the damn time, trying to figure out what in the heck was wrong with me. I easily spent 50 grand during that time period and, well, lost a job over it too.
So it’s no secret that I have developed an incredible bitterness towards doctors throughout this process. The first few years most of my troubles were with my digestive system. I visited a gastroenterologist who ran every test imaginable – endoscopy, colonoscopy, stomach emptying, sitz marker study….the list goes on. He did diagnose me with gastroparesis (usually developed at an old age), GERD and IBS (this, I found is what doctors diagnose you with when they have no flippin’ idea) but everything else came back normal. I was in horrid pain every day, sometimes so bad that I couldn’t stand up. For 8 years now, my stomach has been so distended that I look (and feel!) 7 months pregnant. The other stuff I won’t go into. Do you know what that specialist ended up telling me to do? Stop chewing gum and eat slower. Are you fricking kidding me??? What a joke.
After traveling all over the state to see specialists, I opted to try the naturopath route. This guy was helpful in a way. But again, after all his testing, he came up with nothing. Within the year that my gallbladder was removed, I went up 4 pants sizes in one month. Those of you that know me well, know that I had been working my butt off (quite literally) for 6 years, with daily gym visits and super healthy food. This guy wouldn’t believe me. He actually had the nerve to tell me that I should stop eating so many cheeseburgers. He made me feel like I was going crazy. Suffice to say, on to the next guy!
Finally, a few years in, and I stumbled across a great, compassionate doctor. My parents went with me to the first visit and we were all so happy to have found someone who was determined to find out what was ailing me. Finally, someone who wanted to find the CAUSE OF MY PROBLEMS!!! But of course my insurance got in the way. So the next year, I changed my insurance and went back to see him. But something was off with this visit. He was a totally different guy – asking me all the same questions, and acting like all the other medical professionals I had seen, not really caring to figure me out. I left his office completely devastated. Unfortunately, I found out that a week later he had committed suicide. I’ll be honest, I was really sad for him, but I was also really sad for me. It seemed as though I was destined to live with this mysterious illness for the rest of my life.
Of course, there have been a few amazing people sprinkled in over the span of these last 9 years and it’s amazing how things have worked out. My chiropractor in Spokane had recommended a colon hydrotherapist, who referred me to a kinesiologist in Redmond, and she’s the one that pointed me to the guy who finally diagnosed my Lyme. Thank God for these 4 people. But it’s still hard to forget the 60+ other doctors I’ve seen who “stole” all my time and money. I was better off self-diagnosing than these “professionals” who had gone through years of schooling and getting paid the big bucks to treat me like I was a nut-job.
Fast forward to now. My new Lyme doctor has encouraged me to build my “health team” as she likes to call it. Because my pain has been at the forefront of my symptoms these last few years, these care providers consist of her, my chiropractor, massage therapist and acupuncturist. I know what you’re thinking, as I’ve been told many times, “oh that sounds nice, especially the massage part!” Sometimes I do like to pretend I’m a normal human being getting a luxurious spa treatment, but then 5 minutes in, I remember why I’m there, because it HURTS LIKE HELL people!!
Anyway, lately I’ve been convinced I need to do something more, because none of it is even touching the pain. I’ve been reading about spinal cord stimulation - a permanent implant that blocks your brain’s ability to sense your pain through electrical currents. I’ll be the first to say I’d rather not be cut open again anywhere on my body, and I definitely already have enough internal hardware. But I’m intrigued.
So I visited a pain management clinic. First things first, they require a primary care doctor. I haven’t had one in years, because all I’ve needed to see is specialist after specialist. So let’s add another doctor visit to the mix just for fun! Next, the clinic wants me to try Physical Therapy. I’ve already been there, done that, and it was quite honestly a joke for the situation I’m in. They also want me to sign a very strict contract regarding pain medication. Now I’m all for following the rules, but any of you in my boat knows that there are days that you just have to take more meds that you’re supposed to, to get through the day. So thanks, but no thanks. There is the option of steroid injections, but little does this doctor know, steroids will wreak HAVOC on my Lyme infiltrated body. He tells me that the spinal cord stimulation is a last resort, and I’m feeling even further away from getting help.
Then there are my sinuses. Pretty much everyone I know has experienced the crud that has been going around this winter, so most of you recently recall that it is not fun! But luckily, most all of you get better in time. Unfortunately for me, I’ve been dealing with it for 2.5+ years. And it’s not some stupid head cold. One week my headaches were so bad, that by the 3rd night, I nearly had the hubby rush me to the ER. The Lyme has compromised my immune system so much, that anytime I’m around anyone who has anything, I get hit HARD. My whole body shuts down. I’ve come to hate it when people say, “oh, it sounds like you have what I had.” Lucky for you, I think, not really.
At first I attributed my sinus issues to moving to the west side. Then when I found out we were living in a mold infested condo, I blamed the fungus. But now that we’ve been out of that place for 5 months, I’ve started wondering what else it could be. Surely there has to be an explanation! I decided to go to the ENT to get to the bottom of it. They took a CAT scan and found no trace of mold or infection. Now this is where the deja vu is really setting in. Those first few years….test after test after test, all coming back normal. The images showed just one frontal sinus cavity (weird!) but the doctor didn’t seem at all concerned. He gave me some steroid spray (there’s those steroids again!) and told me to come back in a month.
Well it’s a month later and the problem hasn’t gone away. Last week, during my 2nd visit, I told the Doc that I feel it may be the Lyme causing these issues. “Lyme?” he says, “How long have you had that?” I’m not kidding you guys, we had this EXACT conversation in our first visit. All he can say is, “yeah, there are a lot of symptoms with that disease aren’t there?” AKA “I know absolutely nothing about this, let’s please move on to the next subject!” I told him I also had fluid in my ear, to which he responded by looking up my nose. Um, ok? His final diagnosis was allergies. “I’ve done every kind of allergy testing out there, and it all came back normal” I said. His tone and mannerisms were so dismissive, just like most of the other doctors I’ve seen. It’s like they don’t know what else to do, so they make a general diagnosis and consider their work done. I wipe my hands clean of you, now be gone! Yeah, see ya.
I left his office SO INCREDIBLY ANGRY!!! Mad at him, yes. But mad at myself even more. Why am I leading myself to believe these problems are anything other than Lyme? Wasted time, wasted money, wasted hope. I really try not to be bitter, but this whole experience has changed me so much. And I hate it. So anyhow, I’m back to focusing only on the Lyme. No more doctor deja vu for this girl!
